Our Life In My Words

Beyond blessed....

2011-07-14T14:56:00.007-05:00

This is my longest entry to date, and that's saying a lot. BUT I have so much to write about in this entry and I’ve never been as excited to write an update as I am now. I also feel an awesome responsibility to convey this message as God would want me to, and by that I mean I need to PRAISE GOD for getting me to this place of blessing rather than praise any doctor, any medication, or even my own decisions about my treatment. So, right now, as you read these words please take a deep breath and give God the glory for where I am today. I waited to write this entry because honestly, I’m always a little nervous when I write about progress…as though it could be ripped away from me if I got too excited about it. Others who have battled Lyme, Bartonella, and Babesiosis will understand these feelings because we can have amazing days/weeks/months and then one of the infections will flare up again and we slide backwards. Well, that could very well happen to me BUT I refuse to let those fears dictate how I share my victories because to do so would be to rob God of the glory and praise due His name!

About 6 to 8 weeks ago I was in the shower feeling pretty “poor, pitiful me” because I knew I was approaching the 2 year mark of treatment. As the water poured over me, I started to wonder when I was ever going to feel better. I basically have a running dialogue with God every day and I wasn’t really “asking” Him, but I was sharing my frustrations, which included my mind questioning when I would ever wake up and “feel good”. An answer hit me like a ton of bricks: “You have to FIGHT for it!” I got mad then because I thought, “I’ve BEEN fighting! I’ve been taking all the prescription drugs, seeing all the doctors, following the diet restrictions, and taking the vitamins and supplements! What else am I supposed to do???” The answer was clear again: “Trust in ME and start to push yourself!” I knew exactly what that meant. I’ve been scared to get back out in the world again. It’s understandable since for almost 2 years a seizure could hit just from hearing an unexpected noise. While I’ve been very grateful to be home and not in Kansas City, I had to recognize that I had made a virtual fortress of quiet here in my house. I understood then that if a “normal” person (or someone who hadn’t dealt with noise sensitivity as I have) had lived in my house of silence for a year, they would think the outside world sounded like a rock concert when they emerged. So, in that shower I realized I had to TRUST God and to hand Him my fears. I knew my noise sensitivity was much better than it had been just a few months ago and that I was ready to try more things outside of this house. My last real entry on here was entitled, “Life outside of Lyme”, and I had no clue then that it was foreshadowing that my life was literally heading OUTSIDE!

There were other obstacles besides fear of course. I haven’t been out of the bed much at all for the past couple of years, but especially this past year since I started IVs at home and didn’t have to walk anywhere. My legs, feet, and my ankles were really not used to supporting my weight. I realized this more in hindsight because after walking around the house or just standing for any length of time my feet would hurt and when I tried to sleep those nights my legs and ankles would ache and keep me awake. I understood then that there was never going to be a day that I just “woke up and felt good” as I had talked with God about that day in the shower. Again, someone who hadn’t been sick but who had just been off their feet and in the bed as long as I have would have to work to get muscles back. This new “fighting” I had to do didn’t refer to the illnesses I have, it really was more about the physical rehabilitation I would have to endure to be able to function out in the world! So, I prayed and I pushed and I saw results!

My first outings were with my mom going places during the week while most people are working so public places, retail shops, grocery stores, etc. aren’t as crowded or noisy. Every time we ventured out I saw more progress in what I could handle. I didn’t go as slowly as I thought I would either. I really DOVE into public life again going into places I never would have been able to handle before – like a department store! I was getting out of the house 2 to 3 times a week which, as you know if you’ve been reading this over the past year or more, is HUGE!!! Mom and I were giddy as we saw how much more I could handle. Just thinking about it makes me smile so much! I started supervised driving since it had been so long since I had a seizure. We started with back roads where I felt safe but eventually I ventured out onto the interstate and I did GREAT! Noise hasn’t been my only obstacle to the outside world – it was my biggest, but motion was hard on me as well. Seeing too many people or too many cars or too many of anything was so hard these past 2 years that not only could I NOT drive, at times I even had to cover my eyes while I rode in the car. So, it has been miraculous to get out there and really tackle these obstacles!

Two weeks ago I had an appointment to see my doctor. For the first time in over 2 years I took a shower, dried my hair, put on full makeup, and got dressed not only in the same day but I did it within a two hour time span! Before now I have usually had to take a shower the day before I go somewhere because it exhausted me. This day I was getting ready and as I was putting the finishing touches on my makeup, I looked in the mirror and I was smiling and kind of bopping my head about as if there were music on. I stopped immediately and I took a deep breath, and I said, “This is what it’s like to feel good!” because I haven’t felt like that in YEARS! I’m 36 years old and I quit work when I was 30 because my health had declined that much. I can’t even remember the last time I got ready to go somewhere and wasn’t exhausted by the effort! Tears came to my eyes and, overcome with joy, I got on my knees and just repeated, “Thank you, God! Thank you, God! Thank you, God!” I went downstairs where my sweet husband was working and I said, “I FEEL GOOD! For the first time in years I can say that I feel GOOD!” Oh, the praises that were coming from my soul were overwhelming. Then I drove us to the doctor’s office at the hospital! To say I felt blessed doesn’t quite cover it!

Then last week I had a rough time. My symptoms flare every four weeks but I had also tried to go up on the dose of one of my medications and it was too much for me. I was back in bed, exhausted, sick to my stomach, unable to eat much and with mouth ulcers covering one side of my top and bottom lips. My blood pressure was so low the nurse had to take it three times before she could get a reading and it was 76/48. So I had a week of feeling bad again. I was mad at first because it’s so hard to slide back but then God showed me that my “bad days” right now are like my “good days” were 1 year ago and like my “great days” were 2 years ago. I’m not sliding backwards now so much. Treatment started with 1 step forward and 2 steps back it seems. Then I got to 2 steps forward and 1 step back. I got to see that now it’s more like 5 steps forward and 1 step back. PRAISE GOD FOR SO MUCH PROGRESS.

And then I cycled back this week to that wonderful place of amazing progress. Monday I actually drove myself to get gas in my car, went into Publix to get a couple of things, and then finished at Whole Foods and drove myself home. It has been 27 months since I have been able to drive anywhere by myself. Tackling those errands alone was like completing a marathon for me. I probably had a smile plastered on my face the entire time. I felt like I had a life again. For so long I have felt like a burden to my husband and my family since my mom comes and takes care of me 4 days a week. It was amazing to feel like I was able to be a help and actually run errands! Mom has been at the beach this week with my dad and my sister and her family. It was a much needed vacation for her but I knew she really was worried about leaving me. How wonderful it was to call her and tell her what all I accomplished! And I didn’t just run errands – I actually put the groceries away, fixed my lunch, did my afternoon IV treatment, and fixed dinner for M and I that evening! OH HOW HAPPY I WAS!!!

This week I’ve done more cooking and with that I’ve been cleaning the kitchen. I LOVE music and before I got so sick I would always play it when I cleaned. I haven’t really been able to enjoy it because of my sound sensitivity the past couple of years, but I took my computer to the kitchen and had music playing while I cooked and cleaned. I stopped when I realized I was dancing to the beat some and I was singing along with the music! I was unloading the dishwasher and DANCING people!!! Oh how much joy there was in doing a chore that I used to hate! I actually just turned around and around in the kitchen with my arms spread out – kind of like little kids do – just enjoying the ability to move and I smiled and praised God for it all while I spun around! I have to go back to bed eventually of course – I’m not all the way there YET, but I know I’m on my way! I hope I have been able to convey just how amazing all of this progress has been to me and how grateful I am for it. I’m humbled by God’s graciousness, awed by His unmerited favor, and I feel beyond blessed!

Now, there are difficulties ahead because the antibiotics are fighting all of these things for me right now and while that’s good, it also means that they have basically replaced my immune system. It hasn’t had to fight because the drugs are fighting for it. I will be tapering off of one of the antibiotics soon because it's been 6 months and we believe we have gotten all the benefits we can from it. Then once we stop seeing all of this progress – when I plateau basically – I will taper off the other drugs. So I am having to work hard to do what I can now to rebuild my immune system so that when I stop the antibiotics I don’t end up feeling bad again. To do that I’ve started working on the basics – like what I eat. I am eating all organic fruits, vegetables, and meats. I am keeping an eye on how many carbs I allow myself to eat and I have stopped eating refined sugar pretty much completely. I will allow myself a “treat” – like I had a piece of cake 1 month – but mainly I get my sugar from the fruits I eat and I eat A LOT of fruit! Pineapples, strawberries, and kiwi have been daily staples for their high levels of vitamin C and they help me to feel like I’m getting some “sweets”. My doctor and I are also discussing some IV vitamin/mineral treatments but those would have to be administered at his office and he’s not really set up for that. It takes having a nurse to check on you and the infusion usually takes 3 hours but he's really willing to try whatever we need so if we decide that's the way to go, I think he'll make it work! Basically, we are trying to boost my immune system at the cellular level and it’s true that you are what you eat!

To those of you who have been reading my posts for over two years….thank you. From the bottom of my heart I thank you for your care, concern, and especially your prayers! I do have prayer requests still and what I write now will let you know the specifics of those requests. I have already said the difficult thing about Lyme, Bartonella, Babesiosis, and other tick-borne illnesses is that they do have a cycle and like I explained, they “flare up” at times. I also know some of you reading this are fellow patients so I always want to share what my treatment protocol is so that God may use whatever He leads me to do to help someone else. But, I must stress another problem with these diseases is what works for one person doesn’t always work for another. So, I’m not saying that if you take the drugs I take or do what I do that you will see the results I have seen. I just want to share insights as others have shared with me. I also want to educate people who don’t have a tick-borne illness. I want them to know just how hard it is to find a doctor who knows anything about these diseases or who takes them very seriously. I’ve seen more articles in mainstream media lately about these illnesses so I pray that more people will educate themselves on how to keep from getting sick or how to recognize symptoms if you do get sick. The articles aren’t great sources of information though because these diseases are so under reported by the CDC and doctors will say a 6 weeks course of antibiotics will take care of it. You who have followed me know that was definitely not the case for me. I believe the best information you can get is on the International Lyme and Associated Diseases Society website www.ilads.org . Please educate yourselves and seeing as how we’re in the middle of summer and everyone is outside PLEASE – I cannot stress this strongly enough – PLEASE check yourself, your family, and your animals for ticks!!! I pray for the day that I can look out at my backyard and simply see the trees and grass and not immediately have my mind think about how many ticks are hidden out there with various infectious diseases! I know that day will come and I want people to be aware, not scared.

Now, some of you may be reading this thinking I’m crediting God instead of recognizing it was medical science that has gotten me to this point. But, the reason I know for certain that my progress is from GOD is because I’m the person who comes up with my treatment regimen and we all know I’m not a doctor. I say I come up with it, but really what I do is research and pray. I pray fervently about what to do next. I read and research and M and I talk about it and we both pray about what to do next. My doctor knows my research is based heavily on the treatment guidelines written by Dr. Burrascano who is considered one of the leading “experts” on tick-borne illnesses (these can be found on the ILADS website I mentioned). We discuss what I want to do and my doctor tells me what he thinks – if he thinks I’m on the right track or if he thinks it’s too much for my body. He is very good about keeping me from pushing too hard with the medications. So, with his guidance, I’ve learned that taking things slowly (starting with lower doses of the drugs, building up to a dosage that works for me) is better for me because I can handle things better and basically it keeps me from feeling as horribly as I did when I first started treatment back in Kansas City. I thank God for pairing me with an open minded doctor who is more results oriented than any other I’ve met. But, he will be the first to tell you he’s not a “Lyme doc” and he’s not. I think that’s part of the reason God has me with this doctor because I can’t see a long list of patients with tick-related illnesses that’s he’s helped cure! It makes me that much more aware that God is in charge of this. My doctor is also very careful to explain the dangers of long term antibiotic therapy – and believe me there are SERIOUS risks that come with this treatment. However, M and I prayed about that too and we know that in my case the risks have been worth the rewards. So, before I meet with my doctor, I basically figure out my top 5 worst symptoms and then I research to see which infection could be the main cause. For me, Lyme disease in itself has not been my biggest problem at all! My worst symptoms come from the co-infections of Babesiosis and Bartonella, which sadly most people and MANY doctors just aren’t familiar with! In January I wrote that I started IV Rifampin to target the Bartonella. Bartonella is what was causing most of my serious neurological symptoms. I did “herx” a little (where symptoms flare because you’re killing off the bacteria – you can look up a better definition if you want) and I had to deal with the side effects of the drug – like being absolutely exhausted. I’ve never been so tired. I was back on oxygen and still just lifting my head from the pillow was hard. Then we started B12 injections to help my red blood cell production and I started seeing good progress then. I knew I had to tackle Bartonella before I could really attack the Babesiosis, which is the parasitic infection – it’s a lot like malaria. It’s parasites that infect your red blood cells and it’s hard to get rid of, much harder than most medical research leads you to believe. I think Lyme suppressed my immune system so that when the Bartonella and Babesia hit me, I had no defense and they basically ran rampant in my system. Babesiosis is what had me close to death when I first went to Kansas City. It was killing my red blood cells and that’s what carries oxygen to your brain and it made my blood very thick so really starting the blood thinner, Heparin, was a life saver. So Babesiosis was my next target and after 6 weeks of Rifampin and 4 weeks of B12 shots I asked to add IV Azithromycin to my treatment regimen. While Babesiosis is a parasitic infection treating it with a combination of Azithromycin and an anti-protozoan drug (like Mepron) has shown the best results in most patients. But I knew I couldn’t take Mepron. We’re not sure if I have a bad reaction to the drug or if it’s that my Babesiosis is so rampant that I herx too much on the drug – we just figured out after many trials that I simply cannot take it. My doctor mentioned a year ago that we might try Tindamax as an anti-protozoan drug whenever we got me to the point of being able to treat the Babesiosis. So we prayed about that and as scared as I was to try this drug – and believe me there is fear about starting ANY drug because there are risks – I knew after much prayer that it was time to try it. I started it about 6 weeks after adding the IV Azithromycin. While I did have some herx symptoms, we know that God leading us to take that drug is why we’re seeing so much improvement in such a short amount of time! I have had to battle fear a lot during this process and I try to always hand it over to God, but we all know how hard it is to do so. I had to hand my fears about this drug over to Him, and oh how glad am I that I did! PRAISES!!!

This has been so long, but I honestly couldn’t leave any of it out. I don’t know who will read this – there may only be 10 people in total that do – but if there is one person who benefits from anything I write, I will consider this a HUGE success. I would love to think that I helped someone to get a diagnosis, or that I helped a fellow patient through the hardest times of treatment, but what I would love more than anything is to think that God used me to reach someone to come to Him - that He used me to show Himself as LOVING, STRONG, MIGHTY, AND WORTHY OF PRAISE!

Thank you all so much for your continued prayers. I have experienced the darkest days of my life during various times over the past two years and the knowledge that there were people out there praying helped me see God’s love in action, even from my sickbed. I ask that you keep me in your prayers as we continue this battle. We are not done yet and I have a LONG way to go still. I can stay out of the bed for 3 to 4 hours at a time SOME days, but I still live a lot of my life from the bed. It will take more time, but this wonderfully amazing LIGHT that God’s showing me at the end of the tunnel makes me feel more patient and more persistent at the same time. I will continue my fight but I do so more calmly now, resting in the peace that only God can give. I hope all of this makes sense. I pray I’ve done justice explaining all that God has done for me, but I can’t imagine having accomplished such a task! Oh…I almost forgot that I am adding my most recent picture so you can all see what I look like with some makeup and feeling stronger. This was taken a week or so ago after one of my trips out to Whole Foods. I do think I look healthier…but makeup does do wonders – HA!

Finally, I MUST share some of the very first verses I wrote on this site because I claimed these verses – I clung to these verses – and I feel all of them help me SHOUT what God has carried me through and what He continues to do for me:

“Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!” 2 Corinthians 5:17

"Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe." Psalm 61:1-3

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18

"The Lord is faithful in all His words, and gracious in all His deeds" Psalm 145:13

"The Lord will guide you continually, and satisfy your needs in parched places, and make your bones strong." Isaiah 58:11 (NRSV)

“We also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us.” Romas 5:3-5 (NRSV)

“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 41:28-31

And last but not least…

"O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1

Oh, how I feel like a new creation, He has been my refuge and my strength, He was always with me – even when I was crushed in spirit, He was always faithful, He has guided my every step, He is making my bones strong, He has taught me through my suffering about endurance and hope in Him, He has renewed my strength, and I PRAISE HIS NAME FOR ALL THE MARVELOUS THINGS HE HAS DONE!

Much love to you all-
K

Computer problems...

2011-07-10T12:08:00.002-05:00

I'm having computer issues so I haven't been able to update. I'm writing this on my phone, which isn't easy for me! Anyway, I feel bad that I haven't updated in so long and hopefully my computer will be fine in a few days so I can write all about the WONDERFUL things God has been doing in my life! I even have an updated picture to post and I'm actually wearing makeup - such amazing progress. The hymn, "How Great Thou Art", has been playing in my head for weeks now and I sing it everyday because I am "in awesome wonder" thinking, "My God how great Thou art!" And believe me, my soul is definitely singing. I can't wait to write more about it and hope to do so within the week. Thank you all for your continued prayers...they are working my friends and our God is great!

Much love-
K

A life outside of Lyme...

2011-05-20T10:42:00.004-05:00

I know I haven’t written much on here lately. I had listed reasons for that in my past couple of entries I think. However, this time it’s not because I’m not seeing progress. And because I am seeing progress I’ve been baffled as to why I’m not on here praising God for it! Another friend who has battled Lyme was able to point out a big reason to me – I’m tired of my life being ALL about Lyme and the other diseases I battle. I’m just flat out tired of talking about how I feel all the time! I want a life outside of Lyme! I want to talk about other things! But, I feel I must update you all so that God gets the glory for what He’s doing in my life.

I started a new drug, Tindamax, to hit the Babesia since I can’t take Mepron without horrible results. I started taking it almost 3 weeks ago and it has gone well so far. I only take it twice a day for 3 days in a row and then after 4 weeks or so I will try doing it 5 days a week. I have experienced joint pain with it, but in comparison to how other meds have made me feel this one isn’t all that bad. I’m still taking IV Azithromycin in the mornings and then IV Rifampin in the afternoons. I still don’t like the side effects of those drugs since the Azithromycin makes me feel sick to my stomach most days and the Rifampin makes me so tired, but I’m working through those and I think they aren’t as strong as they were to begin with.

As for my progress, well, sometimes it’s hard for me to see because it’s slow and I get so very impatient because I want to have a “normal” life! However, when I saw the doctor a couple of weeks ago we discussed just how far I’ve come over the past year. I came home from Kansas City in late April last year and when he first met me I was a mess! I had to be wheeled to his office in a wheelchair - I was on oxygen - I had to sit in an exam room with the lights off with my sunglasses on - I had earplugs in and headphones on. Even with all of my precautions I still had a small seizure and I could barely speak to him. And now – WOW – what a difference a year makes! I can walk in under my own steam – I’m not hooked to oxygen – the lights can be on in the exam room – I don’t wear earplugs – and I’m the one who does most of the talking instead of M! Now, I still have to drug myself with Valium to handle ANY outing and after an outing I am worn out and my brain still deals with effects of being overstimulated. BUT, you can’t deny the progress when we compare me now to where I was last year. My doctor had honestly thought I wasn’t going to get much better since I’d already been on IVs for 10 months. He is happy to admit he was wrong now! I must say that every treatment decision that has lead to progress was made after praying for God to lead us down the right path. I’m blessed with a doctor who believes in that as well. He knows that the most progress we’ve seen has been from treatment protocols that I’ve come to him with after praying for guidance!

Other praise worthy progress is that I’ve started getting back on the elliptical machine again. I don’t have any resistance set on it but it’s still a workout for me! I can’t tell you how good it felt the other day to be able to go for 20 minutes straight on it! I have to make sure my heart rate doesn’t go too high, but I monitor that and slow down when I need to do so. I have to build back the muscle mass that has just disappeared after spending so much time in the bed. It will take awhile, but the fact that I’m working on it is a big deal! Also, we’ve been able to get me out of the house at least once every 2 weeks which is a lot more than I had been able to do. We’re hoping to try for once a week as long as I continue to do well on the new medication. However, I still have big limitations. I can’t go anywhere that’s crowded, even if the space is small, too many people is too much motion and my brain gets overwhelmed. I am still very sound sensitive and some days are worse than others, so it depends on the day as to whether I think I can handle going into a store without earplugs. They are always right there in my pocket though, just in case!

A lot of what God’s been working on with me is not dealing with my illness, but rather with my spirit. He has been placing things on my heart to think about. I don’t know if He wants me to share particular messages with you all, I think He mainly wants me to acknowledge that we aren’t just working on my physical and mental state of being – we’re working on my spiritual state too. It’s a battle to be positive about what I’m going through. It’s a battle to force myself to see the progress instead of only focusing on the severe limitations I still deal with. It’s a battle to realize that in just a few weeks I will have been doing IV treatment for 2 solid years and I never thought it would take that long. These battles are all part of a larger war that is going on inside of me. A war that will bring me out of this illness not just as a healthier person but as a spiritually stronger person – more compassionate, more understanding, more giving, and more willing to follow Him down whatever roads He leads me down no matter where they may lead.

I watched a program that Beth Moore was on. She’s a Christian speaker, author, etc. and I love to hear her speak. She talked about the meaning of the Greek word "makarios" which means "blessed or blessing". She shared a definition that goes into greater detail and it was this:
"Biblically one is pronounced blessed when God is present and involved in his life. The hand of God is at work directing all his affairs for a divine purpose and thus in a sense such a person lives- Coram Deo (Latin), before the face of God."

I have said this before, but it bears repeating – at least in my life – we get the definition of “blessed” mixed up these days. We think a person is blessed when good things happen to them. We often think of “blessings” as material things and possessions – but we are SO WRONG! We think to be “blessed” is to live a life with no problems and it's just the opposite of that really because in a life without problems we wouldn't have the same need for God to be so present in our lives! To be blessed is to have God working directly in our lives and in my case, well, He has used these hard times to bless me with His presence! Of course I am human so there are days that I cry for the life that I wish I had - one filled with children, or just one where I could drive a car or go into public places without worrying about how noise will hit me or if I will have a seizure. BUT on most days I know that this life is the only way I could have ever come to know my Lord and Savior as I have. So, what I have gained through these illnesses, I know for a fact to be far greater than what I may have lost. God has been working on me for a long time, but it's through this fire that He's been able to accomplish the most - and I still have a long way to go!

For those of you who started reading this when I started it a little over 2 years ago – thank you for sticking with me and thank you for your continual prayers! They are working…they are working so very much! I may not write as often, but it’s because I’m preparing myself for LIFE OUTSIDE OF LYME!

"Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed." Psalm 57:1 (NIV)

"But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble. O my Strength, I sing praise to you; you, O God, are my fortress, my loving God." Psalm 59:16-17 (NIV)

OH - I'm attaching a link to a song if you'd like to listen. The song is really good, but what makes it even better to me is that a friend shared with me that it was written by a woman who was battling Lyme Disease. It means even more to me now :)

Much love-
K

Yes, I'm still here :)

2011-04-12T10:22:00.005-05:00

It’s been a long time since I posted an update on here. I battle the fatigue that comes along with taking the IV Rifampin and I also have to battle the oddest side effect which is feeling emotionally numb. I’m not depressed but I’m not happy either. I feel like my emotions have been muted and that’s so strange for me. It’s also a big reason I haven’t written on here in so long. It’s hard for me to write when I don’t feel an urge to write. It’s also hard to know what to write because I struggle with how to explain things and then I just get frustrated and give up. BUT I know there are some very loyal family and friends who keep up with me by reading this and I wanted to report that I am indeed still here and still fighting!

The main change since last time has been adding our second change in the lineup – IV Azithromycin. Taking two or three different kinds of antibiotics is important when you are fighting so many different bacterial infections. Lyme Disease is only a small part of what I’m battling. It’s actually “co-infections” of Lyme that really knocked me down and caused me to get so terribly sick – in my situation it’s the Bartonella and Babesia (or Babesiosis) that keep me down. The Rifampin is a great drug to hit the Bartonella infection and I can tell there have been a lot of improvements. However, treating the Babesia is trickier since it is actually a parasite that lives on red blood cells. The main course of treatment for Babesia is taking Azithromycin AND a type of anti-protozoa medication, Mepron. A protozoa is a single celled organism and, as I said, Babesia is a parasite so I normally refer to the medication for it as “anti-parasitic”. I’ve tried to take Mepron many times – starting a year and a half ago when I was in Kansas City. My body reacts pretty violently to it. The usual dose is 1 tsp. twice daily but that was more than I could handle and my seizures increased. The weird thing is that I probably had more seizures because the Mepron was actually working and ended up killing off too many red blood cells at a time depriving me of enough oxygen to get to my brain (red blood cells carry oxygen). We kept having to taper the dosage down until eventually I was down to taking a half tsp. on Monday morning and then another half tsp. on Tuesday night and that was it for the week. I still had trouble with that so we ended up stopping the drug. I tried it again this January and thought, “I’m a lot better than I was this time last year so I’ll try to take the normal dosage.” BIG MISTAKE! I took it for 4 days before M made me stop because I was reacting so horribly to it. The weird thing is that I don’t remember anything from the 4 days I was on it. Again, likely due to killing off more red blood cells than I could handle.

So, for the past 5 months or so I’ve only been taking an herbal supplement that helps rid the body of several types of parasites. This supplement helps keep my Babesia symptoms at bay somewhat, but it’s not killing the Babesia off like I need. We’re meeting with the doctor again in a week or two and will discuss the idea of easing my body into a Mepron dose at a VERY slow rate. Like putting a few drops of Mepron in a glass of water and after a week adding another drop or two. Basically I want to keep from killing off those red blood cells so fast but I also want to make sure I’m getting rid of Babesia instead of just masking the symptoms with a supplement. Taking the IV Azithromycin has been hard on me as well. Halfway through the bag I start to feel extremely nauseous and it is a miserable feeling. Oddly enough it helps if I eat a pickle or two around that time because the vinegar taste overrides the sick feeling somehow. I don’t understand it, but I do appreciate it. But with the addition of the Azithromycin my treatment schedule is now more time consuming. I start the Azithromycin drip around 9:00 and it goes for at least an hour and a half to two hours. Then I take a break until 2:00 which is when I run a small bag of just IV fluids which takes an hour. Immediately after that I start my Rifampin bag which takes between 2 and 3 hours to finish. If I feel good I can get the drugs in a little faster, but when I start to feel sick, achy, or just miserable I have to slow them down to help keep the side effects at bay somewhat. So I’m tied to this IV pole for up to 6 hours a day and no less than 5 hours. It’s hard on my body to lie around in bed for that long even though I don’t actually feel like getting up to do anything. My body just aches a lot – especially my back and neck.

NOW for some good news. I have gotten out of the house a few times for something other than doctor's visits – YAY ME!!! Once was a small trip to an outdoor shopping area and I went in a couple of stores and handled it without earplugs. Then I’ve made 2 trips to the grocery store and didn’t need earplugs either time – HUGE PROGRESS!!!! Those outings have occurred over the span of 5 weeks or so because there are still days that just standing upright will wear me out – but to have some really good days makes the really bad ones easier to bear. Of course I’m still not able to drive myself anywhere and I don’t do well out of the house for more than an hour and a half, but ANYTIME I can actually get out of the house is just such a blessing to me! So, we pray that these good days come more frequently because I do feel they are God’s way of showing me light at the end of this very dark tunnel.

The last thing I’ll write about is not about my difficulty taking the medications, rather it's my difficulty in handing over all of my worries to God every single day. It’s almost ingrained in human nature for us to want to take credit for the good things that happen in our lives and then blame God (or someone or something else) for any of the bad things. With my emotions being so dulled I was having a really hard time sensing God around me and I was angry about where I am with treatment. This Friday will be my 36th birthday and I had started doing something we probably all do around our birthdays – I started to think about where my life is versus where I thought it would be by the time I was 36. Trust me when I say I NEVER imagined I would be acting more like an 86 year old than a 36 year old! I always thought I would have at least one child by now, maybe two, and that I would be a busy mom and wife. It’s hard to fathom just how far away my reality is from that dream. June will mark 2 years of IV daily IV treatments and I can’t believe it’s been that long! I mean, on one hand I KNOW it’s been a long time, but on the other, well, I am so cooped up in my bedroom that I don’t really notice how fast the days turn into weeks and months and years!

So, I was thinking on where I wanted to be by now and then I got really angry with where I am. I once again made the stupid mistake of thinking I should get mad at God for letting me go through all of this. It took a couple of weeks and a couple of good online sermons to make me see how much I’m taking for granted. While two years is a long time, I can also see just how many improvements I’ve made during that time. My thinking is clearer, my body is stronger (or rather I can walk better and my hand strength is back), my heart rate doesn’t jump into the 180s when I walk to my kitchen, I’m not having as many seizures or tremors even, I’m getting better at handling day to day changes, etc. I prayed for God to make me healthier and He is doing just that. God has been the one directing my treatment plans by planting seeds of ideas in my head to talk to the doctor about trying. He has blessed me with a doctor who is willing to work with a patient who wants to be so very “hands-on” when it comes to planning out treatment protocols. He has given me a husband who wears himself out doing all he can to take care of me physically, emotionally, and spiritually and who runs his own business all at the same time. He has blessed me with parents who give everything to help us. My mom has been coming four days a week to help take care of me and on the days when I don’t need her sitting right with me she’s busy trying to do laundry, clean our kitchen, and make meals so that my sweet husband can set up more meetings outside of the house without worrying about me being home alone. My dad has not just given up having his wife around but he’s the one who’s there if my sister needs him to pick up her girls at school while she has to work. He also handles a lot of the things that mom would be doing if she were able to be at her house more! And my wonderful sister came to visit me this weekend and she lifted my spirits by just being here. Even though she only lives 20 minutes away, I haven’t really been up for visitors so it had been maybe 5 months since I had gotten to hug her and spend some one on one time with her. It was wonderful medicine for me.

So, no, things are not wonderful. My life is not where I thought it would be by the time I was 36. I have a long way to go to get a life closer to “normal” and I get frustrated by all of that. However, I felt strongly that God is telling me that while I'm not getting to live a "normal life" or a mediocre life even, I also will not have a "normal" or mediocre relationship with Him. And when I think about it that way - when I see the vast difference in my relationship with God over the past 2 years, I feel stupid for overlooking such a gift. I do serve a great God who is faithful and who has never, and will never, leave my side. I may not feel Him as strongly sometimes, but I know He’s still there and He’s still working miracles in my life. For now, those trips out of the house are my miracles and He has plenty more in store for my life I feel certain. Basically, I will stop trying to beat myself up with what I don’t have at this stage in my life and I will try to remind myself daily of all the blessings God has given me – one of which is HUGE and that is all the wonderful people that keep on praying for me! Those prayers are heard and I can feel them so I appreciate all of you going through the past 23 months with me via this blog. It’s an easier road to travel if you have friends and family traveling it with you.

“Bless the Lord, O my soul, and do not forget all his benefits – who forgives all your iniquity, who heals all your diseases.” Psalm 103:2-3 (NRSV)

Much love-
K

Frustration versus faith...

2011-02-21T10:08:00.003-06:00

I get frustrated about what my life has been like over the past 2 years. I find myself questioning God a lot about the "whys" and "whens" and I don't seem to find answers. I watched a sermon online this week that reminded me of something important - God is sovereign over ALL things. I already knew that, but I needed to be reminded and maybe I need to focus on that more every day. I need to remember that if I believe that God is sovereign over ALL things, then I should trust that what I'm going through is necessary for God's plan. I cannot understand God's ways because I cannot see things as God does. We often search for answers in the midst of trials and heartache - answers that we try to cling to in order to get through those things. I know that for the past 2 years I have told myself that God's had me go through this in order to mold me into the person He wants me to be, and I believe that's true. I would also add on that without going through all of this, well, I know I wouldn't be as close to God. Our relationship wouldn't be the same. But my relationship with God is different because in the end, I always choose to believe in God's plan and to do that I have to have faith in God's Word.

And while I can point to how my circumstances have lead me closer to God, the sermon I watched reminded me that I don't know the answers to WHY I'm going through this, and honestly, I don't need to know WHY. I have to trust God for WHY I'm going through this. As we grow older we can look back on certain times in our lives and see the benefits buried in bad times a little clearer. Can you think back and see that experiencing a heartache or a disappointment was necessary to shape you into a better person? Probably so. Of course, we might have experiences that left us bitter or angry. If we're honest, we would probably see that we have both. I believe the difference in whether we come out bitter or better is up to us. I think it comes down to our faith and trust in God. If we only sit back and think about how bad we have it, or how hard things are, we WILL become bitter. However, if we trust in God and have faith that even the worst times of our lives are part of God's plan for us, we can come out of hard times as a better person.

The Bible tells us that God's plans are for us to prosper and to give us hope and a future (Jeremiah 29:11). That doesn't mean every day is going to be wonderful for us. I have had to grasp that in order for us to prosper and have hope, we have to trust in God completely. Easy to say, VERY hard to do. And I have to state the fact that our worldly view of the word prosper does not have the same meaning as the biblical meaning. To prosper may not mean complete healing, or financial windfalls, or even less stress. It may be that God's definition of prosper means our continuing to grow closer in our relationship with Him. Very often it takes hard times and painful experiences for us to truly come to God because frankly, we've tried everything WE can do and nothing has worked. We then throw everything to God and pray for Him to make a masterpiece out of the mess we hand Him.

Each time God gets me through a really rough time I make the mistake of thinking, "Well, nothing can be as hard as that was!" WRONG - things can be worse, but the difference is that if and when things DO get worse, my faith has gotten stronger so I trust God to get me through AGAIN. And HE DOES! So, I've been sitting here thinking about my life, my problems, my worries, and once again I have to realize that handing things over to God isn't the only thing I can do - it's the only thing I should do.

Now, for my health issues. Things are getting better slowly I think. I've "tweaked" my medications - how much I take, when I take them - to try and keep myself from staying so terribly exhausted. The Rifampin is going to make me tired, but timing my other meds around it differently seems to help some. The other physical symptoms I deal with are extreme nerve pain (esp. from my neck to my back), overall body pain, and not getting enough oxygen. I'm not back on oxygen every day thankfully, but I need it more right now than I had. The neurological symptoms I'm fighting are mental confusion, difficulty processing new information, changes in my routine, inability to focus on anything (even simple conversations sometimes), and mood changes. Treatment often causes some symptoms to flare and for now my back pain and inability to think clearly are the most troublesome. I know people read this, especially my Lyme friends who deal with the same symptoms, and think, "She doesn't have too much trouble thinking clearly or she wouldn't be able to write this!" However, I must remind everyone now that when I get a message out clearly these days, it's because GREAT effort and a lot of time have been put into writing it. Also, writing has always been what I loved to do and anyone who knows me well would tell you I talk all the time :) Although if you read this you probably already figured that out from my long, rambling posts! But whenever something comes out clearly I think it's God allowing it to happen.

I do think we have hit upon a BIG thing that may help tremendously. I know I've explained that my red blood cell count is always low and so is my hemoglobin and hematocrit. Red blood cells carry oxygen and hemoglobin is actually the protein molecule in the red blood cell that carries the oxygen. Hematocrit is the proportion of blood, by volume, that consists of red blood cells. Now, for the past 20 months I have had weekly blood work done and every week those three things are low. We had been under the impression that I was dealing with iron deficiency anemia (there are several types of anemia) and I was put on iron supplements but somehow the numbers never got better. When I came to my doctor here in town he saw that my B12 was low - which we've known for a long time - and he suggested I go on a B Vitamin complex. Of course, at that time our first concern was how to stop, or slow down, my seizures so we didn't get around to the B Vitamin complex until this fall when the siezures had improved. I tried to take the B Vitamins but they would make me feel nauseated, so I stopped. Then we dealt with the whole gallbladder issue and I thought perhaps that was the real reason I had felt sick on the B Vitamin. So, I tried again in December but no change. When I saw the doctor in January I happened to remember to tell him about it. He said we would try B12 injections. First we were to do weekly injections, but he said if I could feel a difference that I could give them daily. I did feel a difference after the first few shots so I started daily injections and this week, for the FIRST time in 20 months, my red blood cell count, hemoglobin AND hematocrit levels were all inside the normal range. B12 is essential to the production of red blood cells and since red blood cells are what carry oxygen around and lack of oxygen is a big reason I stay exhausted - well, you can imagine how happy I am about what this could mean for me. We're not sure if I'm just low in B12 or if I have pernicious anemia which occurs when the stomach doesn't produce the protein that binds with B12 so it can be properly absorbed in the small intestine. If that's the case then B12 injections will be a life long thing. But, for now, that's not the issue - we just need to get my levels up and see if my symptoms improve.

That's my big news and hopefully over the next few weeks we'll also see the shape of my red blood cells come back into the normal range. Mine are too large and are misshaped so they don't work as efficiently as they should. This could mean a lot towards me having more energy which means I might be able to try getting out in the world again. For now just walking to the kitchen is tiring. But through all of this I will trust that God leads me as we continue forward in my treatment. I know that He planted the question about Vitamin B12 in my head to ask the doctor because it wasn't on my list of things to talk about with him! Although it's hard to have improvements come so slowly and I want to be able to jump out of bed and get back into a normal life, well, my body couldn't handle that. I think that's where trusting God comes in. I have to trust that God isn't just leading me through the tough times, but that He has the exact timing of my healing and improvements mapped out! He is always working in my life - even though there are so many times when I can't see it or feel it. It's hard to be frustrated all of the time and I have felt that way a lot lately so I want to change it. I have just found that the best way to get rid of that frustration is to refocus on my faith in God.

Thank you all for continuing to keep me in your prayers and know that God hears those prayers! He is working in all of our lives ALL of the time!

"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

"Lord, let your constant love surround us, for our hopes are in you alone." Psalm 33:22

Much love to you all!
K

Tired times...

2011-02-10T09:47:00.002-06:00

I have wanted to write an update for weeks but I just can't think straight and I'm exhausted. After posting my last entry, which was a very heartfelt prayer to God, He answered within a few days. I can't really explain how He does things in my life, I just know when He is leading me somewhere. He led me to try the IV Rifampin again that Monday. I had really been praying to be able to stop the IV medication and get my PICC line pulled, but He wasn't leading me in the direction I WANTED to go in, but in the direction I NEEDED to go in. So, with a lot of "tweaks" to how I take the Rifampin, I've been able to handle it this time around. I do 500 mL of IV fluids before I start the Rifampin bag which is 300 mgs diluted in 1,000 mL of fluid. Then halfway through the Rifampin bag I stop it and take a break for at least 30 minutes and I run the bag slowly over 3 hours (not counting the break). This is the only way I can handle the drug. When I tried to go without the IV fluids beforehand and not stop the Rifampin for a break halfway through, bad things happened. I had seizure like episodes but would also scream and cry and generally look like a person possessed. All in all, it's just been a really hard time.

Basically, symptoms I thought were related to my Babesia infection were really coming from the Bartonella. That's the one that really makes my neurological symptoms flare up. God allowed me to have a fantastic first week on Rifampin where I felt good and even was able to go to the doctor's office without earplugs or sunglasses by the end of that week. So, He showed me what the Rifampin could do - that it was the right drug for me to be on basically. Then the Rifampin side effects came on which is mainly exhaustion and flu like symptoms. I get so overwhelmingly tired that holding my head up off the pillow is too hard sometimes. I had to go back on oxygen a few days last week and my energy improved - well, that sounds misleading, basically I was simply able to sit up in the bed instead of lying flat all day.

Next week will mark 20 months of IV treatments. In those 20 months I have had bloodwork done every week. In all of that time there have only been 3 times when I had a normal red blood cell count and a normal blood level - normally they are low meaning I stay anemic and that can cause exhaution as well. I have been taking an iron supplement this entire time which was supposed to get rid of that problem but it hasn't. In a CBC test (a complete blood count) they don't just count red and white blood cells and blood levels, they also look at the size of your red blood cells. Mine are always large and they don't carry oxygen to other parts of my body well. I have known my B12 levels were low and I tried to take a Vitamin B complex but it made me feel sick to my stomach. I happened to tell the doctor that on my last visit (God put it in my head I feel certain) and he wrote me a prescription for B12 injections I can give myself. I had not tried them out because I wanted to see exactly what the Rifampin would do as far as side effects, but once I was just knocked out by the exhaustion I knew I needed to start the shots. There is a type of anemia called pernicious anemia which is caused by a lack of B12. It can cause your red blood cell count to be low and for the cells to be large. I'm praying that is the type of anemia I have and that the B12 injections work very well for me. I do know that I took a day off the Rifampin last week and then the next day I did my first B12 shot and by the next day I was able to go into the kitchen and get my own bowl of cereal. Doesn't sound like much, but it's really a big deal compared to how I have felt. I don't know if it will help raise my blood pressure in the end, but I pray something will because it's staying around 70-80/45-60 and that's really low and is yet another thing that adds to the exhaustion.

I believe we are on the right track - I've just been frustrated that the fight isn't over yet. I'm ready to pull this line out of my arm and be able to get out and about in the world. It's not quite time for that yet and I have to realize that doesn't mean God isn't answering my prayers. In fact, it would have been so much worse if I had asked for my PICC line to be removed before God showed me I needed more IV meds! We have been blessed to have a doctor who works with us so well and allows me to be so active in coming up with a treatment protocol. We are really just blessed to have a doctor here in town AT ALL! I could still be stuck in Kansas City! God answers prayers every day. It's just when you're in a battle for this long it can be easy to just give up and get mad. I have to allow God to work in my heart every day and keep me from feeling hopeless. He is my strength and my shield for certain.

Oh, the other thing about the Rifampin is that I can't focus as well while I'm on it. It makes updating on here so difficult! So, if I don't write often that's why, but know that I'm still waging war on these diseases. I feel God will see me through all of this, it's just exhausting to go through and sometimes just exhausting to even think about. It was nice when I was on the Gentamicin and I was able to get out and about and see what progress I was making. However, I also realize that the one upside to my kidneys not filtering well was that it caused my blood pressure to go up. I was around 100/60 for a couple of months and that was HUGE! I felt so much better. So, keep praying that God leads us down the right path for my treatment and I pray that I will have enough energy to keep updating on here!

In these tired times verses like these help so much:

"Indeed we call blessed those who showed endurance." James 5:11 NRSV

"I will send down showers in season; there will be showers of blessing." Ezekiel 34:26 NIV

"God is the strength of my heart and my portion forever." Psalm 73:26 NIV

Sorry if this has been rambling or confusing - but I did my best :) No proof reading though, I'm simply too tired! Sending much love to all of you and lots of appreciation for your love and prayers!
K

My prayer to God today

2011-01-13T13:19:00.002-06:00

I normally don't post my prayers. In fact, I rarely type out my prayers. But today, God made me see that by typing out my prayer I could focus more. Basically, I would be less likely to have my thoughts wander off, as mine are apt to do when I pray. So here it is. No editing - just a prayer:

Dear Lord,

Prayers to You should start with praise and I have much to praise You for. There for awhile I was beginning to remember what a “normal” life felt like. I was blessed with the ability to take care of my husband after his shoulder surgery. I was able to cook and clean and I felt like I was lifting burdens off of my husband’s shoulders. That felt wonderful. I praise You for all of those special moments. I praise You for showing me what everyday “miracles” are – the ability to do things I once complained so much about – like going to the grocery store, cooking, doing laundry. I saw such progress in such a short amount of time and I was beginning to taste what my future might hold for me in regards to my health. I thank You for giving me that time and for giving me a husband that understood when that strength left and I was battling everything so hard again. I thank You for sending me a man who knows my struggles and simply jumps in to take care of whatever is needed without so much as a sideways glance to make me feel badly about being too sick to do things anymore. I have many praises for You, Lord. I praise You for mine and my husband’s parents who try to do all they can for us and who constantly keep us covered in prayer. I praise You for the friends I have that keep me in their prayers as well. I even thank You for the friends You have removed from my life during this tumultuous time because they proved themselves to not be “true friends”. I thank You for the people who stepped up to be my “true friends” – some being friends I hadn’t spoken to in years, others being new friends I made during my time in Kansas City. Old or new – the one thing that my newly created circle of friends has in common is a thriving love for You and a desire to know You more, to love You more. They have lifted me up with Your word so many times. When I was low, You gave them the words to say, the messages to send that lifted me up out of the darkest of pits. You used so many people in so many different ways to touch my life and I am truly thankful and now realizing how humbled I should be that You would do all of this for me.

Now, I must confess several things that I haven’t done well. I confess that I constantly try to guess at what Your plans for my life are and how I can get to the “good parts” faster. I do not know what plans You have in store for my life, so I need to stop questioning. I confess that I frustrate myself daily when I realize what little time I have allotted for You on some days. I am confounded by the fact that I don’t continually keep my focus on You because it is on those days that I see and feel the miracles You are working in my life. I look back on journal entries and am astounded at how many times You carried me through dire circumstances and You kept fear from my heart as You did so. I confess that I get angry about where I find myself at times – physically, mentally, and especially spiritually. I confess that many times that anger is directed at You. I lay here thinking, “He could so easily heal me. Doesn’t He think I have learned enough from these years of living through my own personal hell? Why does He continue to carry me through horrible times when He could just stop allowing the horrible times to happen?” I have so many questions but You are the only one with the true answers and they are answers I may never know until I reach Heaven.

Just over a month ago I was seeing that promising “light at the end of the tunnel” and I was so happy. My heart overflowed with joy and I couldn’t stop seeing “little miracles” everywhere I looked. Doing laundry felt so good, washing dishes and cooking seemed like mountains I had finally climbed. Going out into the world was more like a dream come true and I saw that there was more of a “life” ahead of me than I had expected.

Then things went downhill again. My Babesia flared and that is the one that really changes my mood. It creates mood swings that happen so fast my own head spins. I feel like it is during those flares that I find myself not embracing You, but rather avoiding You because I feel let down and angry. I confess that is not the way I should behave and I acknowledge how very often I find myself doing it anyway. I have cried out to You from the depths of my soul and I take refuge in the fact that You hear those cries – You hear them and do not shut them out. It shouldn’t be that I cry out to You only on my “worst” days, but that I should cry out to You every day. I should sing praises to You for all you have done and simply trust in the plan that You laid out for my life before I was even born. Lord, I want my circumstances to change, but I am unsure as to what You want me to do in order to change them, or what I must figure out how to do in order to move through this oppressing sickness and life of bedridden solitude. I pray about medication and treatment plan changes. I constantly question if I am doing the right thing. I pray that I am only following where You lead me in this battle. The hardest part about this battle is that these diseases manifest differently in every patient and every patient reacts differently to every drug. What works for some may do absolutely nothing for others. That’s where the FEAR comes in – that’s where Satan does his best work – by confusing , which leads to fear, which leads to doubt in each and every decision I make.

Lord, clear out the confusion from my mind and allow me to feel where You are leading me in my life. Give me the strength to continue this fight and the knowledge of what move to make next. Give me the courage to go wherever You may lead me, even if it’s scary or full of fear – let me put my WHOLE TRUST in You. Work on me and in me, Lord, and give me peace where there is worry, patience where there is doubt, and love where there is overwhelming sadness. Allow me to feel the fullness of Your Spirit in me and to follow You in all that I do – even if the steps I make have to be made in blind faith.

I love and adore You Lord, and I know to put my full faith and trust in You. But, I have to ask that You continue to give me the strength to do exactly that as each day presents its’ own trials and heartache.

In Jesus’ holy name,
Amen

Thanks to all of you out there who are praying for me. Please keep me in your prayers as the past few weeks have been so hard. My blood pressure is staying low so I'm in the bed a lot. Also, my body aches painfully because of being stuck in this bed. I can take the physical part much easier than I can the mental symptoms. I can become completely irrational, then cry for no reason, then get angry to the point where I throw things, then cry again because I see just how irrational and crazy I'm acting. It's like I don't have control of my emotions, or even my entire brain for that matter. This too shall pass. God's gotten me through much worse and I trust His plan will lead me out of this rough patch as well. I am just so ready to have a "grocery store outing" kind of day. I look forward to my next one!

Much love to you all!
K

Ringing in the New Year quietly, but with GREAT cheer :)

2010-12-31T12:56:00.003-06:00

In my last entry I wrote about all of the things I’d been accomplishing lately – working on Christmas cards, cooking, cleaning the kitchen some, driving to the grocery store with mom. God’s been doing great things for me. I re-read that entry and it helped me deal with where I am today. Today I’m on day 3 of no energy and feeling stuck in bed again. I’d been feeling very down about it. God got me to read that last entry and I realize the things I’ve been doing that are causing me to feel so tired. A big one is that I want to jump out of this bed and just start back to living full force, but I can’t. Being sick, weak, and living in bed for over 2 years means I need true physical rehabilitation to get back to living. My muscles need conditioning – just basic walking and stretching exercises. I need to be patient with my body and with my brain. On Wednesday I had what I term a “mini episode” type of seizure. No grand mal seizure activity but started out crying for no reason – which often happens right before a seizure – and then it was like I was crying so hard – not sobbing – but crying from the depths of my soul. It was one of the few times in my life where the crying was so intense it was as if I were listening to someone else cry – like it couldn’t be me making that noise. In a way I think I was crying out to God. I had to put an Ativan in my mouth and M put my oxygen on me just in case. It went away within 15 minutes, but afterwards I was exhausted and slept for 2 hours, ate dinner, and then slept some more. My cries to God may be as simple as a three year old who needs a nap but hasn’t taken one. It was also God’s way of showing me that I must slow things down, as much as I hate to do that. I’ve simply been so excited about all of my improvements that I have been pushing myself to get up and do even when I feel so tired and cranky. I keep thinking, “Just get up and do a few things and you’ll be in a better mood because you’ll feel good about accomplishing something.” That’s not true all the time – in my case, well, it just was too much pushing and not enough resting.

We’re also going to run tests to check my hormone levels. Two years before I was diagnosed with Lyme, my estrogen level was almost non-existent, as were my progesterone and testosterone. The doctors had even put me on synthetic hormones to get me on track with my cycle. They never worked. Now it’s like I’m a teenager going through puberty almost – my oil glands are more active, I’ve had this craving for anything with vinegar on it (from salad to pickles), my mood swings aren’t as “violent” but they cycle much more rapidly, and I will cry for no reason. I think all of these things indicate a possible hormone imbalance. I think as I start to get well my hormones are finally trying to work and they may be overcompensating after all this time. Women who suffer from seizures are close to 3 times as likely to have a seizure during their monthly cycle (best way I could say that where men wouldn’t go – “ewww” – hahaha). BUT, I so many of those symptoms and feelings also happen when my Babesia flares. I’m supposed to take my anti-parasitic drugs 6 days a week for 3 weeks and then go off for a week. This happens to be my week off and I have gone downhill more as each day passes without taking them.

All of this points us in the direction we feel God has been leading us – to start treatment on the Babesia again. Not just the anti-parasitic meds, but the Mepron (a prescription drug normally used to treat malaria) and start Azithromycin – both standard forms of treatment for Babesia. I had been on both while in K.C. but I was on so many other drugs that my body was too overwhelmed to handle those as well. And as much as I’ve been hoping to have my PICC line pulled in January, we’re going to talk to the doctor about oral Azithromycin versus the I.V. form because there’s some data showing the I.V. form to be much more effective. However, I am SOOO READY to get my PICC line out of my arm. The thought of taking a normal shower without having to wrap my arm and worry about it getting wet – well, that seems like a dream come true!

And, although I was back at home this Christmas instead of being in Kansas City at the IV clinic last Christmas, I still didn’t get to spend it with my family. If you live in Birmingham, Alabama then you probably feel like I do – everyone in this town is sick with something! The flu, strep throat, bronchitis, and other bacterial and viral infections have been making the rounds. One of my nieces had strep throat one week and then the next week was down with the flu. The week after that, my mom had a viral infection and the doctor put her on Tamiflu even though her Influenza blood test was negative. I say all of this to explain that as much as I wanted to go to my sister’s house Christmas morning and visit with mom, dad, my sister & brother-in-law, and my nieces and nephews – well, my immune system couldn’t chance it.

And here at my house it didn’t feel very “Christmasy” either. Neither M, recovering well from his shoulder surgery, nor I were up to the task of decorating the house and I knew I wouldn’t be up to cleaning up the decorations after the holidays were over. With the great expense of my medical treatment, M and I were once again not exchanging gifts with each other, or with any other family members, so I wasn’t even online shopping, much less going out to shop. The only thing I did that differentiated this time as the Christmas season was sending out Christmas cards. It’s a big task because I like to write inside each card and I hand address every envelope. I was proud that I got them done and that my shaky hands were able to complete the task! However, when Christmas morning arrived, I felt depressed. No tree, no presents, no family visits…nothing. I wondered why I felt more depressed this year here at home than I had last year while in K.C. and I realized it was because last year I did celebrate Christmas, at least a little, with my treatment friends. Here it was just me, M, and our furry, 4 legged baby, little m. I was disappointed. I was pouty. I was feeling sorry for myself – note to self, this could have been the hormone issue or Babesia talking, haha. Then I went to the kitchen and saw it was snowing. We haven’t had a white Christmas in Birmingham in, well, in the last 35 years that I’ve been alive. The snow was nice but I almost overlooked it because there was no traditional Christmas breakfast, so I was still pouty in the kitchen. It took me until that afternoon to realize that God had “stripped down” my Christmas to show me some very important things. First, and most importantly, was to realize how much the commercialism of Christmas has become what I equate the holiday with. We may use the saying, “Jesus is the reason for the season”, but honestly, without decorations, gifts, traveling to be with family, and the other rituals, you may have felt just like me, disappointed. So, I had to focus more on the true GIFT of Christmas – God’s gift to the world – JESUS. God’s son sent to earth to pay the ultimate price for our sins. I thought about just how BIG that gift is. It’s not just a gift at Christmas – it’s a gift we benefit from every day on this earth. And I felt ashamed that I hadn’t seen that sooner. Then I realized all the wonderful gifts God has given me, especially lately, as I am beginning to see the possibility of a much more normal life for myself. I re-read my last entry and thought, “K, how in the world could you think you hadn’t received gifts this Christmas? God’s been giving you gifts every day of the month!” So, I needed to be reminded and halfway through Christmas Day I realized how blessed I was to have my sweet husband, my baby dog, my loving family (even if they weren’t with me), and getting to see snow falling was my Christmas present. Weeks ago I had told M that the only thing I would miss about being in K.C. for Christmas was the snow. Last year was the first white Christmas I had ever experienced. Then here I was at home and God was covering the ground with a fine white mist of snow. It made me realize how stupid I had been. Maybe I needed this “stripped down” version of Christmas to really change my perspective on Christmas as a whole. I wouldn’t have realized just how many other things I think of, Christmas trees, Christmas music, decorations, parties with friends and family, when I should put more focus on what Christmas is really about. It’s Jesus’ birthday party! That’s what we should be celebrating! Thank you God for reminding me what Christmas is truly about – which is celebrating Jesus and thanking you for the most amazing gift the world will ever know – a Savior who would die for all of mankind’s sins. I’m not saying that I won’t buy Christmas gifts next year or that I won’t think being with family is important. I would like to think that God likes the so-called “Christmas spirit” of being kinder to one another, thinking of what others would like to receive, having family and friends close to you. It’s just that this year, well, I got to see what it would be like without all the muss and fuss!

Now I’m going to spend the last day of 2010 in the bed with great hopes that 2011 finds me out of this bed much more often! I feel that God is leading me out of this tunnel and I just have to keep my focus on Him to find my way out of here. The light at the end of the tunnel IS God and His plans for my future. I can’t wait to see what happens next!

As I lay in bed, wanting so badly to get up and out of here, well, that “mini episode” reminded me of something. Only GOD knows when it’s time for me to be up and out of here. So, after thinking on that this verse seemed very fitting:

“Be still, and know that I am God!” Psalm 46:10

I wish you all a wonderfully happy and healthy New Year!!!
Much love to you all!
K

God's Perfect Timing

2010-12-13T13:28:00.001-06:00

I marvel at how God works so often. In my own life’s journey I find myself wondering less about the miraculous things He does, focusing more on what I want Him to do. I think everyone is guilty of that. However, there are times when God does something in your life that reminds you that His plan is ALWAYS the best plan. I’ve had that happen a lot lately.

In my last entry, I shared that my sweet husband was about to have shoulder surgery and how worried I had been about the both of us being “patients”. I also explained that once I started back on the anti-parasitic medication that I started seeing so much improvement in my symptoms – even getting out in public and I rejoiced about that. It was definitely God’s perfect timing because when my husband needed me – well, I’m happy to report that I was able to handle taking care of him. Now, we had A LOT of help from our wonderful families. M’s mom took him to have his surgery and kept me updated by phone calls. My mom stayed with me at the house because sometimes being nervous can trigger shakes or seizures – although it’s been almost 6 months since my last BIG grand mal seizure that lasted a long time. Funny thing is while I had anticipated feeling nervous, I was actually quite calm. God’s sense of peace I think. M’s mom also took him to his physical therapy appointments and generally offered to do anything else we needed done. Both of our moms offered to cook for us and I let my mom bring some of her spaghetti.

However, what was simply amazing is that I was able to do some cooking. The day before M’s surgery I had mom come over while I cooked a real meal. I wanted her there in case I started feeling weak or faint then she could take over. But, I made a chicken Caesar salad with a white wine vinaigrette dressing for M. It’s one of our favorite recipes and it doesn’t take long at all. Just long enough to brown chicken strips in some olive oil on the stove. I cannot tell you how wonderful it felt to cook for my husband again. For those of you who know M, well, you know that he LOVES food. It’s always nice to cook for someone who is so appreciative! He was very proud of me for trying and thrilled that I succeeded. My mom and I were beaming about it as well! I went on that weekend to make chili and I did that all by myself. I even cleaned the kitchen!

So, back to God’s perfect timing. I was able to cook a meal for the first time in almost 2 years the very day before my husband’s surgery. That was God letting me know He was giving me more strength than I dreamed of to get through M’s surgery – to be able to help take care of my husband who has been taking care of me for years! I can’t begin to tell you how wonderful that felt. Since M was “out of commission” so to speak, I desperately wanted to do more around the house. Mom came over that Monday, December 6th, to run to the grocery store for us. I had called her that morning because I felt God was telling me to go with her. Believe me when I say I did NOT want to go to the grocery store. With the bright lights, noise, motion, and aisles of food decisions to be made, well, it’s like seizure heaven. But, I felt God pushing me. Mom was running late and my fever (which I still have daily) was going up. I sat in the floor thinking, “Well God, it’s not my fault she’s late. I mean, I can’t go to the grocery store when my fever’s going up!” But God kept pushing me. So, I got up and got dressed. I put on makeup – I didn’t just throw on clothes either, I picked out an outfit! I was still nervous. I took my Valium and said, “Okay God, I’ve got my earplugs and my seizure meds. If you want me to go, then I will go!” Mom showed up and was surprised to see me looking like a normal person – ha.

Whenever mom takes me anywhere she drives my car. I mean, for the past 8 months it’s just been sitting in the garage so we try and drive it when we can. However, my mom doesn’t park her car in a garage and she worries about how to pull out of my garage with her car in my driveway. I have always been able to do it with no problem, so mom asked me to talk her through it. When I felt that she wasn’t going to be able do it, I said, to my own surprise, “Can I do it?” My mom said, “Well, okay.” and she smiled. I haven’t driven a car in a year and 8 months. I am a person who has always LOVED to drive. I have a great sense of direction and have always enjoyed road trips – even those I made alone. So, I backed my car out and, like they say, it was just like riding a bike. It all came back to me and I got a big smile on my face. Again, out of nowhere, I heard myself ask, “Do you think I can drive to the grocery store?” and mom answered, “Do you want to try it?” and I decided I should try it. It’s a 5 minute drive on back roads with lots of side streets where I could pull over if I needed to and have mom take the wheel. The fastest speed limit is 30 mph and I felt like God had been pushing me for this very reason. To once again try something I was scared to do. But I did it. I DROVE!!!! It was amazing, liberating, exciting – it was BIG PROGRESS!!! I drove us to the grocery store and then I put my earplugs in. We went in the store and I got a buggy. The earplugs only made the noises sound closer to what normal people would hear. It was still very loud but I was handling it just fine. Mom and I went up and down every aisle. I picked out food to cook. I picked up some cookies to surprise M with. I was grocery shopping and it was AWESOME! The hardest part was checking out with the scanner going, “BEEP, BEEP, BEEP” as every item went across. The bag boy was talking loudly and I had to just focus on putting items on the belt. When there are too many things stimulating my brain, it’s best for me to put all of my attention to one task. I was able to get through it, pay by myself, and wheel my groceries to the car. I know mom and I probably looked like lunatics because our eyes were wide with excitement and we had huge grins on our faces! Then, I prayed for just a second before telling mom I could drive us home. I did that and then helped bring in groceries and I was able to put them away. In just one afternoon I got to experience what it feels like to be a housewife again. I got to do a chore that poor M has had to do for the past 2 years. GOD SHOWED ME AMAZING PROGRESS! Now, it will be a good while before I come close to driving by myself. Doctors say 6 months after my last seizure, but I want to make sure I am in NO WAY endangering others just so I can feel independent and drive. But, oh how amazing it felt to be the one driving – see there’s my “control issues” coming back…haha!

That week I kept doing things – writing Christmas cards, cooking, cleaning the kitchen, etc. I got to feel like a person again instead of a problem. Friday I cried as I was rinsing out dishes – I was crying tears of appreciation and love to God. I was telling Him thank you for every little thing I was able to accomplish. Not to mention that 3 of our neighbors hired a tree removal service and Friday was filled with the sounds of chainsaws, leaf blowers and big trucks having logs dropped into them from a crane. Just 4 months ago that would have sent me into a seizure. It would have honestly been a nightmare for me. I would have been screaming, crying, shoving earplugs in, basically I would have been freaking out and likely seizing off and on all day. But not Friday – and I thanked God for the ability to handle that noise. I did have to take a Valium, but those work differently in my brain. They help my brain filter through the excess noise and stimulation. Basically they make my brain work more “normally” and they don’t make me tired nor do they make me feel spacey or loopy. Even though they are a “depressant” drug, they actually make me feel “up” because they help my brain to drown out all the excess noise.

God’s perfect timing again – He has been doing amazing things for me. I am so very thankful for all of it. But then on Saturday I didn’t feel well. I was basically exhausted. As much as I want to get up and start living again, I can’t ignore the fact that my body has been bedridden for a long time. It will take a while before I can stay out of bed all day. I had pushed a little too hard and I had to stay in bed. I was upset about it. I felt like crap after feeling so good. It was depressing. Later on I realized it was my 4th week. Let me explain. Lyme and it’s co-infections seem to cycle every 4 weeks meaning that your symptoms pop up more during that 4th week. Sunday I was back to having mood swings, my feet hurt when I walked, my back hurt, and I basically felt crazy. But once I put it all together and understood it was my 4th week, I was better able to handle the symptoms. If all I ever get is 3 weeks where I can do chores and stay out of bed at least 8 hours of the day, then have one week where I’m tired, well, I’ll take it! I’m getting glimpses of better times to come. God’s answering my prayers. I wrote last time about how I had started giving up my life dreams and telling God I would settle for less, but in the end I figured out that’s not how God works. God does BIG things – He can answer BIG prayers – His plan for me is good and I trust in it. Please thank God for all He is doing for me. He’s answering my prayers and the prayers all of you say for me. I feel honored and humbled by all that He’s done. I now cry more tears of joy than tears of pain. I get teary eyed now just thinking on what He’s done for me in the past few months. I thank Him every day. And the next time you drive to the grocery store, try to do it like I did – smiling like a lunatic so happy to do a chore! We all have to recognize the blessings God gives us every day. I may not go to the grocery store every day, but He blessed me with my husband, my family, my friends, even my baby dog! I may not have ALL that I dream of, but He’s not done with me yet, is He? He’s not done with any of us yet. He works on us every day of our life if we allow Him to do so. I’m sitting in silence more lately. I’ve been sitting with beautiful Christmas music on as well. My mood improves greatly when I step away from the television and put myself in a situation where God can speak to my soul and my soul can speak to God.

In our Christmas cards I have put the following verse because it is so fitting for our lives this past year:

“Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:18

I’m focusing more on trying to give enormous thanks and to try not overlook even the smallest things God does for me. I’m not perfect so many days I completely miss seeing what God wants me to see, but that’s why He works on us every day of our lives.

I hope all of you are enjoying this Christmas season. I got to work on Christmas cards while watching snow flurries outside my window. That was commonplace when I was in Kansas City, but in Alabama, well, it’s pretty much a gift from God and I enjoyed it thoroughly!

Much love to you all-
K

To be perfectly honest...

2010-11-30T12:09:00.002-06:00

I need to come clean. Often times, when I write these entries, I write because God is giving me a message or teaching me a lesson that I feel He wants me to share. That’s not the part I need to come clean about though. When I follow God’s direction I find myself feeling more upbeat and positive about the things I’m going through. I realized that if someone reads this they might think I have the best attitude about my situation, or a sunny outlook on the frustration and disappointment I so often feel. Now I believe that God has having me write this entry and not spare any of the details. So, I’m going to take you where I find myself so often, in a pity party feeling confused, hurt, angry, and hurt. Don’t worry though, God won’t let me finish without writing about what He is doing to change all of those feelings that weigh down my heart.

When I started to feel better taking the IV antibiotic Gentamicin, I rejoiced! I wrote about all my improvements and I know many of you rejoiced with me. Then my kidneys stopped filtering the medication well. I had only been on it for close to 3 months but I was seeing so much improvement that having to stop it broke my heart. I’m just now realizing that it broke so much more than that. The longer I was off the medication the more I seemed to slide backwards with old symptoms flaring up again. This broke my belief that I was nearing the end of this painfully difficult time in my life. Instead of the hope I had been feeling, I started to believe that I would never feel any better or make any more progress. I resigned myself to accepting what seemed to be fact – that I would never be able to lead a “normal” life. I stopped asking for big improvements and instead asked God to just heal me to the point where I could do household chores, cook for my husband, etc. Basically, I told Him that I didn’t have to be able to leave the house and deal with the noise of the outside world. I told Him I was letting go of the dream of having the life I really wanted. I even began to give up the idea that I would be blessed with a child and get to experience motherhood. I started trying to focus on the positives of not being a parent. You know - how everyone says they would travel more if they didn’t have children, or take a job they loved instead of one that paid the bills because, well, we all know it’s expensive to have kids! I was trying to give up all my dreams thinking that they just weren’t in God’s plan for me and that I needed to accept and appreciate what I was given instead of focusing on what I couldn’t have. I stopped believing that God had great plans in store for my life. I began to think He just had some sort of “good enough” plans. In short, I had gotten mad, then felt hurt and broken hearted, and finally I started trying to be in an “acceptance” phase.

There’s a part of that logic that is rational. If I focused solely on what I wanted out of life, or where I thought my life would be by the time I was 35, then I would be horribly depressed right now. It was depressing enough when I tried to ask God to take away my desires and show me how to be thankful for the life I had. In fact, when I asked God to do that I didn’t feel any weight lift off of me like I normally do when I try and hand something over to God. That’s when I got really frustrated and angry with God. I questioned why He would give me such desires in my heart if He was not going to bless me with them. I started letting God know how upset I was and then some days I just didn’t talk to Him at all. All of this just made me feel horrible.

You see, I thought it was God who was directing me to what IV antibiotics I should try. First I tried Doxycycline but the side effects were horrible. Did you know that heavy doses of antibiotics can cause mood swings? I didn’t know that until I started to go through all of this. So, we stopped the Doxy. Next was the one I wrote about last – Rifampin. It’s a very strong drug, as I have written before, and mainly used to treat tuberculosis and some types of meningitis. I started it and all seemed well until day 3 when my mood changed dramatically. I felt so despondent. I would lie in my bed and just cry uncontrollably. I had no idea why I was feeling so depressed. I couldn’t find the good in anything. I decided to call a friend from treatment in Kansas City who had been on Rifampin before. I wanted to know if the depression was a side effect, or if it was truly what I was feeling, or if it was part of a Herxheimer reaction – where symptoms will come up because of an overload of toxins in your body. When I told her how I had been sobbing crying she immediately said, “That’s the Rifampin.” So, on day 5 we stopped the Rifampin and within a 24 hour period there was a change in my attitude. After 48 hours I was beginning to feel more like myself. After 4 days off the drug I knew for certain that it was the culprit behind the emotional change and I knew that I would not be able to take that drug.

I realized there weren’t many other IV antibiotics that would be helpful for me. I’ve been on 6 so far and 3 of those I wasn’t able to take due to side effects or allergies. I already know I have drug allergies that keep me from trying many of the other antibiotics, so I started feeling helpless again. I felt awful – both physically and mentally. Spiritually speaking I was at a low point too. I felt like I had been following where God was leading me regarding the medication changes and when they didn’t work I felt let down. To top it all off, my sweet husband has to have shoulder surgery on Thursday. He injured it 4-5 years ago and kept being told to do physical therapy for years – which he did but got no relief from the pain. We finally just asked our doctor, the same one who treats my Lyme, to order an MRI for M’s shoulder. It showed a torn muscle around his rotator cuff along with a cyst and bones spurs that need to be removed. So, I’ve been having to see my constantly loving caretaker in constant, miserable pain and I felt more angry at God. We all know the saying that God will never give you more than you can handle. Well, I have heard people add “I wish He didn’t trust me so much!” after that comment as a joke. I truly felt that way though. I was mad that God would add yet another hurdle for us to jump over. Sometimes I forget that we don’t have to jump those hurdles on our own power – that makes them almost impossible to get over. When we allow God to work in our lives He will carry us over those hurdles. It doesn’t make the hurdles go away nor does it make you feel that there are no hurdles in your life, but it does get you over them – even the highest one. I guess by now you can see that God has been working on me again.

When the Gentamicin started to affect my kidney function I started to take myself off as many of my other medications as I could to ease the burden of my kidneys having to filter so much. This weekend God put something in front of me. It was a bag that held my anti-parasitic medication. I had taken it to my doctor’s office to show him, since I had gotten it from my Kansas City doctor I wanted him to see what it was. We came home that day knowing that I couldn’t take the Gentamicin and I sat the bag down in another room. So, this weekend I was in there and saw the bag and thought, “Hmmm. I wonder if I should get back on this since I’m off the Gentamicin now?” I decided to try it. Within 2 days I was feeling stronger and better. The anti-parasitic medication hits the Babesia. I have Lyme, Bartonella and Babesia. The first two have to be treated with antibiotics but Babesia is actually treated like a parasite with drugs and supplements that are normally used to treat malaria. But, I don’t just credit those anti-parasitic medications for how much better I feel. I credit God because I cried out to Him. I was already down because of how I felt physically, but on the Rifampin I cried out to Him like never before. I cried for Him to carry me, to heal me, to get me through all of this. God is good and He sure did answer.

His answer started to form in my brain. I knew God was pushing me to try and get out in the world again. I felt a tug to get out because I felt God was going to show me what He was doing for me. So, yesterday I decided to have mom take me to the photo shop to print out my Christmas pictures. I had my earplugs, headphones, and seizure meds in a small bag with me in case I needed them, but I was going to try and brave it without them. We went into the photo shop and I was able to download my picture on their computer and fill out the order form. We were told they would be ready in about 3 hours. I didn’t want to go home though, I wanted to see what God was doing for me physically. I had a pair of jeans that I needed to return, so we went to the store and I exchanged them. Then I decided to really push it and go out for lunch. Now this is huge because I haven’t been in a restaurant since March of 2009. Most people don’t notice just how noisy restaurants are – people talking, forks and knives scraping plates, chairs being pushed away from tables, music playing, etc. But we went. It was loud so I put my earplugs in. That made it sound like it would to someone without supersonic hearing – haha. It was a lot of visual “hustle and bustle” too. I have a hard time with a lot of motion around me but I was handling this very well. Mom and I ate and I was absolutely giddy about being there. We left and I took a Valium to calm my brain from all the commotion. Then mom went in the photo shop to pick up my pictures because I knew I had reached my limit for sound sensitivity. I came home and was so happy but so exhausted! Mom helped me get back into my pajamas and into the bed. I hooked up a bag of IV fluids and promptly fell asleep. I was so tired that my husband had to physically shake me awake! I’m a little tired today, but not as much as I have been in the past after short excursions.

You have heard people say, “God is good all the time. All the time God is good.” Honestly, it is true. But, you have to seek God and when you do so, you also have to be silent so you can hear or feel what He is trying to teach you. I had been trying to drown Him out by watching mindless television shows all day or playing on the computer – basically anything that would keep me from communing with God. But, finally I turned everything off and tuned in more to Him. Through my experience yesterday I learned that He is asking that I trust Him more, and give Him credit for the medicine instead of just crediting the medicine itself. I learned that His plan for my life requires that I break myself free from the depression and heartache that the devil loves to use in our lives. I learned I have to tell myself repeatedly that God IS good ALL the time – ALL the time God IS good! I learned that I will always be working on trusting Him and living by faith. We all have to work on our faith constantly because we are human and will fail so often. We must step out in faith more often so our trust and belief can grow even stronger. We do this and through it we begin to have a more mature relationship with God. I’m working on how to literally “live by faith”. I have no idea what God has in store for me, but He has taught me over the past month or so to stop selling Him short! I was putting a limit on what God would do in my life. I wasn’t praying for BIG things because I didn’t believe I would get them. I may not get everything I had in mind for my life, BUT God may have all of those things, and maybe more, in store for me. I have to learn to trust in Him more and more because right when I think my prayers have gone unanswered, He shows me how much more He can do for me – much more than I even prayed for.

I got OUT and I was able to do something I haven’t done in almost 2 years! I ate at a restaurant and I can’t tell you how great that feels. God is working, even when I’m in doubt, or mad, or frustrated – He knows how I feel and He is working. I just have to step out in faith. I was hesitant about getting out – but He pushed me. I was concerned about how loud the restaurant would be – but again I felt Him pushing and I went! I serve a wonderfully loving and amazingly strong God and I am thankful for ALL that He does for me.

Personal sidenote for those of you who know me well and get my Christmas cards every year: The picture on the card of me, M and my little baby dog, well, it came across as a big lie to me. Why? Well, because it took me three days to get ready for it. Taking a shower, painting my nails, fixing my hair, putting on full makeup – even lipstick and having nice clothes on for the first time in 6 weeks or so – well, it sure isn’t our regular day life!! We sat on our deck and used a tripod and self timer to take the pictures and took about 15 before I was ready to collapse – and we all know I don’t go outside often! In the picture I am doing what I instinctually do when a camera is around – SMILING BIG! When I looked at the picture on my computer I laughed so because I look so healthy and happy with my life. The reason that is so comical to me is because right after it was taken I came inside and just laid on the living room floor. M had to take my cardigan off me and my shoes. I looked at him from the floor and said, “This should be my Christmas photo – it’s a ‘true life’ shot!” Now I think perhaps that picture isn’t a “lie” – it may be a picture of what God has in store for me– good health and much happiness!

“I cry aloud to the Lord, and he answers from his holy hill.”
Psalm 3:4 (NRSV)

“He is not far from each one of us. For in him we live and move and have our being.” Acts 17:27-28 (NRSV)

“No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.” 1 Corinthians 2:9 (NIV)

Much love-
K

Just asking for prayers...

2010-11-13T09:34:00.003-06:00

I am healing well from the surgery. However, all of the symptoms haven't gone away. We had my post-op appointment with the surgeon yesterday and she said some people experience the nausea, lack of appetite, etc. for more than just one week so we're praying it all passes soon.

We need many prayers right now. I started the Doxycycline and after 3 treatments I had to stop it. Something I never knew before going through treatment is that IV antibiotics can have really weird side effects - physical and mental - or maybe these type of side effects are just for people on long term therapy, or perhaps they just do these things to Lyme patients, I have no idea. What I do know is that the Doxy started making me horribly depressed. I would have accounted it to just having had surgery, or pain medication, etc. but the mental feeling I got was exactly how I felt when I was on Doxy in Kansas City. Back then I thought it was the stress of treatment or from being away from home that kept me depressed. Now I can say with certainty that a majority of that depression came from the Doxy. I was on my third treatment when I started crying for no reason, had bad mood swings and felt so angry all of the sudden. I cried and said, "I'm stopping this bag!" - basically turning the line off so that the Doxy wasn't going into my veins anymore. It only took about 15 minutes for me to start to feel more like myself mentally. I may have been able to handle those emotions more when I was in treatment with other patients who became close friends, but now that I spend most of my time alone I don't think it would be healthy to try and put myself in that mental state every day.

I saw some improvement on Doxy back then, but I was on it for 7 months and I think I got all the benefits I could from that drug. Honestly, we were only trying the IV Doxy because I have been scared to try IV Rifampin - it's a strong antibiotic that is usually only used for treating tuberculosis. It can be hard on the liver and it is the color of orange Gatorade when it goes into your vein which is just kind of creepy. We were going to try IV Doxy and oral Rifampin to see how I handled it instead. We know Gentamicin is responsible for 90% of my improvement but my kidneys can't tolerate it. It is one of the 4 IV drugs recommended for Bartonella, I'm allergic to one of the other drugs, one is only available in injectable form and I need something stronger than that, then there's Rifampin. The improvement I saw from the Gentamicin let me know what I already suspected - Bartonella is my main problem. So, now me and M are back to the drawing board once again. We are praying about how to proceed. We are praying to lift my fears about our next move. We are just asking for guidance as we make our next big decision. We discussed IV Rifampin with the doctor last time and he is okay with prescribing it to me, but he didn't want me to feel scared about starting it.

The main problem is that I am sliding back down to where I was before. It's hard to explain but it takes long courses of antibiotic therapy - sometimes 3 years - for some Lyme patients to "get their lives back". When we go off of antibiotics our symptoms will return until we reach a point in our treatment where we've killed enough of the bacteria and bugs to feel somewhat normal without the antibiotics. I was hoping I would be further along by now, but I clearly still need some form of antibiotic therapy. Good news is that I haven't had a seizure yet - which is a miracle since I've been off antibiotics for close to 3 weeks now. The bad news is that my sound and light sensitivity are back, I'm unable to handle anything very well - I get upset easily, can't think clearly, etc. I was on 40 mgs of Valium a day while in Kansas City to help with my seizures. On the Gentimicin I got to where I didn't need ANY Valium which was GREAT! However, I've had to start taking it again. Yesterday I took 30 mgs which is the most I've taken in 4 months.

Sliding backwards is hard on me and watching it happen is really hard on M since he so wants to snap his fingers and make everything better for me. It's easy to start to feel sorry for myself or for us both to feel as if the rug is being pulled out from under us. It's easy to question and cry and to be mad. But none of those feelings is going to help us - we know from experience that they will only make things worse. So, we're asking you all to pray that God will lead us in the right direction in terms of my treatment. We are open to stopping IVs and trying to just do oral antibiotics, but we don't want to pull the PICC line until we know whether my body can absorb the oral medications well. We just want to go in the direction that God leads us with no fear, feeling strong and absolute about our next steps. We need to make a decision soon though before I get much worse. We will be talking to the doctor on Monday and hope to have a game plan by then.

I appreciate all of your thoughts and prayers and will update as soon as I can about where we go from here. A couple of quotes from the book, "100 Days in the Secret Place" seem quite fitting for my current sitution. They help describes why it's so hard to give up trying to control your own life and how we must stop making our own plans instead of following where God wants us to go:

"Pray for strength and faith enough to trust yourself completely to God. Follow Him simply wherever He may lead you and you will not have to think up big plans to bring about your perfection. Your new life will begin to grow naturally."

"God is your true friend and will always give you the counsel and comfort you need. Do not resist Him! Learn to listen to Him in silence so that you won't miss a word of what He says to you. You know a lot about outward silence, but little about inner silence. You must practice quieting your restless imagination. Stop listening to your unrenewed mind and the kind of logic it has! Get used to coming to God and asking Him for help when He asks you for something you are afraid to give."
-Archbishop Francois de Fenelon written in the late 1600s

Much love to you all-
K

Post surgery update

2010-11-07T12:33:00.004-06:00

Surgery went well. However the ultrasound didn't show the adhesions from my gallbladder to my kidney. It also hadn't shown how swollen it was. But, good news is that it is out! The surgeon said I may still experience some symptoms for the first week or so after surgery. For instance, not being able to eat normal portion sizes of food without pain. I do know that the horrendous heartburn is already gone and my back feels better. My incisions did bleed for a bit after surgery and my white shirt is now stained with blood. I think it makes me look tough - haha. I also had a wonderful surgeon and great nurses who let me keep my sunglasses and headphones on until the anesthesia kicked in and they were back on when I woke up in recovery. I'm very thankful for that because the bright lights and noises in recovery could have easily caused a seizure! So, again, the Lord always goes before me and this time was no exception!

The bad part of the whole ordeal was the pain medication. After having passed over 100 kidney stones and having had 20 surgeries, well, I've developed a high tolerance for pain medications. The nurse in recovery couldn't believe how much I was still hurting after two doses of morphine. There are many instances where someone could fake pain just to get pain medication, but you just can't fake pain when you're coming out of anesthesia so they know it's not that you WANT morphine, it's that you need it. They ended up having to give me a 3rd dose and then later switched to a dose of toradol (another strong pain killer). M talked to the surgeon about my problems with pain medications and told her we still had some Fentanyl pain patches from a kidney stone 7 months ago. She wouldn't be able to prescribe such a strong drug to me for a minor surgery but she went over with M what medications I could take while on Fentanyl and what to avoid. I tried to just take the Lortab pain pills she prescribed because I honestly HATE pain medication, but I got no relief at all with the pills. After 36 hours of watching me wincing in pain and crying out each time I moved, M finally told me he was going to put a pain patch on my back. I was hurting too much to argue about how I could "tough it out" so the patch was put to work. It works wonders and my incisions are now just sore and I can walk to the bathroom without bending over double!

Oh, my kidney function tests showed improvement this week. We actually didn't know if I would be able to have the surgery on Thursday since they wouldn't operate if my kidney function stayed the same or worsened. So, again - THANK YOU LORD - because I was desperate to have that gallbladder removed. My kidney function even improved enough for me to start on IV Doxycycline this week - YAY!

I just wanted to thank you all for your kind thoughts and sweet prayers! I know that God has gotten me through all of this and I continue to lean on Him to get over the next hurdle. I pray that you all feel His love and protection as you go through your own hurdles in your life. I feel very groggy from medication right now, but I feel more blessed than anything else. I can see that God is still leading me down a path and He has wonderful plans for me! I just have to be patient and keep leaning on Him to get there!

I know I've posted these verses before - but I don't think one can ever hear them enough:

"I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord." Psalm 40:1-3 (NIV)

Much love-
K

Out with the bad...

2010-11-03T10:05:00.003-05:00

My surgery to have my gallbladder removed is scheduled for 10:30 tomorrow morning. This will be my third laproscopic surgery so the good thing is that I'm not nervous about it. The bad thing is that my blood test from last week came back and my kidney function was actually worse even though I had been off the antibiotic for 2 days before my blood was drawn. Until my kidney function gets back to normal, I can't take ANY antibiotics. And, the longer I'm off the antibiotics, more of my symptoms come back. Going to consult with the surgeon on Monday was very difficult. My noise sensitivity was bad and I had to go back to wearing my earplugs and even my headphones. After thinking about all the progress I've made I was able to notice more of the psychological symptoms that Lyme and Bartonella cause. I knew my mood swings had gone away - no getting angry for no reason and then crying because I couldn't figure out why I was angry. I recognized that I was able to think more clearly and was not as confused as I had been. I also noticed that I've been less anxious as well.

Those are things you might not notice until they start to come back. I am having more difficulty thinking, although I believe that could also be due to the fact that I've had to be off of my blood thinner in order to have the endoscopy and the gallbladder surgery. No blood thinner means less blood flow to the brain which equals more difficulty processing even the most simple of thoughts. I have a hard time completing sentences without stopping in the middle to think of the next word. In fact, writing this entry has taken forever because I keep having to stop and think so hard about how to explain things. There is good news though. First, I don't feel those mood swings coming back. I thank the good Lord for that because they make you feel absolutely insane! Also, I'll be back on my blood thinner medication within a day or so of the surgery and after a few days of it I believe my ability to think clearly will come back.

However, the anxiety has started to creep back in. It's anxiety over the smallest things - like going to an unfamiliar place, having to meet someone I don't know, or not be able to expect what's coming next in my day. I know noises can trigger my seizures and I felt that again as I was in the hospital and surgeon's office the other day. After spending months without the unexplainable anxiety, I now believe that the more anxious I feel the worse my sensitivity to sound becomes. The anxiety also seems to put my brain in a state where seizures are more likely. I've been noise sensitive for a long time - long before starting treatment in Kansas City. And while it definitely became much worse, I think the way noises startle me might cause my seizures more than the noises themselves. It's always been easy to startle me because my "fight or flight" response, which comes when you get scared, doesn't work very well. The horomone that is released by the adrenal glands to respond to situations where you get scared or startled is cortisol. My cortisol levels were sky high when I first got to Kansas City. So much so that the doctor said it was as if I were being chased by a tiger all day. I stayed in a state of nervousness and anxiety well beyond what would be considered normal. My cortisol levels are lower now, but my adrenal glands still don't work as well as they should. I think on the Gentamicin my anxiety lessened as did most of my other symptoms and my adrenal glands started to function better. My anxiety is not nearly as bad as it was before the Gentamicin. I believe God allowed me to have a break from so many of my symptoms in order for me to understand them better. Once you better understand the reason behind the symptoms, you can understand how to treat them more effectively.

I've probably rambled on more in this entry than in others because well, I just can't think very well right now. I do trust in the fact that God has wonderful things planned for my life and that He will get me through all of this. I am looking forward to seeing how much better I feel after my gallbladder is removed. The surgeon said I might see a big difference in many of my symptoms, but that I should definitely have less back pain and stomach problems. I'll just be happy to eat again without getting sick and being able to get rid of this horrible chest pain. But, I must admit, I'm excited to think about what other symptoms may be related to my gallbladder that I haven't even thought about. God is good and He's proven that to me time and time again. I look forward to having this surgery behind me and for my kidneys to function properly again so we can get back on a treatment regimen and keep pushing forward.

I appreciate all of your prayers and would of course appreciate some as I go through my surgery and recovery. I'll write an update as soon as I can. Thank you all so much for keeping me in your thoughts and prayers!

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14 (NIV)

"O Lord, you are my God; I will exault you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1 (NIV)

Much love to you all!
K

The ups and downs of it all...

2010-10-30T08:19:00.007-05:00

I have noticed a pattern since I've been on treatment. It seems like I'll be making progress, feeling better, have more energy - or some other positive thing - and then BAM, something knocks me down again. I'm quite tired of it to tell you the truth.

I'll give you some recent examples. The Gentamicin was showing me the most improvement by far in my treatment! I didn't just go out into the world For the past 2 months I had been experiencing what I thought was horrible acid reflux or bad heartburn every day. The doctor put me on an acid reducing medication and it seemed like it helped at first. Anytime I tried to stop taking it though I would end up nauseated and getting sick. I figured it might be a side effect of the Gentamicin and thought I could deal with that side effect if I had to because I was seeing so much improvement in other areas.

I have blood work done every week - I may have written about that before. Anyway, I have all of my labwork results from June of 2009 to now in chronological order. The results are mailed to me each week. I had noticed that my creatinine level was climbing for a few weeks, but it was still within normal ranges. Creatinine is a waste product in your blood that your kidneys filter out. Testing creatinine levels basically tell you whether your kidneys are filtering properly. I was concerned that it was getting higher, but not too concerned - until it went outside of the normal range. Sometimes when you're on IV antibiotics there are times when your kidneys just seem to "slow down" in their filtering process. I had times where this had happened while I was in Kansas City and the levels went back to normal within a couple of weeks. When my creatinine levels was high for the 3rd week in a row the doctor and I both knew it was time for a meeting.

I knew that we would have to stop the Gentamicin because you just can't push your kidneys like that. We were basically meeting to discuss what other antibiotic choices we had and what we thought would be the next best thing for my treatment protocol. Since I was there I decided to tell him just how HORRIBLE my acid reflux was. I only did this because I had stabbing pains in my abdomen on Sunday and I was generally feeling worn down and nauseated all the time. He scheduled an endoscopy (where they put a small scope down your throat to see inside your esophogus and top of your stomach) and a couple of tests to check out my gallbladder.

Wednesday I had an ultrasound on the gallbladder and then a test that basically checks the function of your gallbladder. They inject die into your system and then take scans of your abdomen for an hour (but you get to lie down so it's not bad). They then inject an enzyme and see how your gallbladder handles it. That part made me nauseated and feeling weak. The next morning I had the endoscopy done and the doctor said everything looked fine - no damage to the esphogus or hiatal hernia, etc. The lab results for the gallbladder test weren't coming back until Friday.

In the meantime I was feeling like crap! I was so ready to find the problem and fix it! I was actually praying they would have to remove my gallbladder because that would be an "easy fix" compared to trying to treat yet another symptom. So, I was happy to find out yesterday that my gallbladder will have to be removed. It has about 25% functionality and is the reason for the heartburn, severe pain in my abdomen and my upper back. We meet with the surgeon on Monday afternoon for a consult and to set up a date for the surgery. She performs surgeries Wednesdays through Fridays so I am praying we can get in on Wednesday because I'm VERY tired of not being able to eat without excrutiating pain and attempts to throw up!

I stopped the Gentamicin this past Monday and so far have been impressed that I am still functioing well and not having seizures, etc. I did exceptionally well out in public at the hospital for the tests and I didn't even wear earplugs - YAY! Last time I took a short break from the Gentamicin I ended up having a small seizure by day 4 so I was very worried about having to get off of it. But I think God is showing me that it is HIS plan to have me off the Gentamicin. I still have a hard time with control - I want to control my situation but I cannot. God is showing me that He is in control and He can do great things - like giving me the ability to go out in public with no earplugs! I was worried about getting these tests done as soon as possible and to schedule my surgery as soon as I can. It wasn't just for the pain factor, but also because that being off the antibiotics could mean the seizures might start up again, and for the simple fact that I can't start a new antibiotic until we get all of this done. I was hoping I could start one this week, but my blood work from this Wednesday came back showing I still have high creatinine levels. We can't start ANY antibiotic therapy until my kidney function improves - praying my levels are back to normal this week!

I'm forcing myself to think that this may be God's way of leading me down a different road in my treatment process. There will be a day, hopefully soon, where I'll get off of the IV antibiotics and just continue on orals. I have prayed that God will make it abundantly clear to both M and I as to when that change needs to happen. For now the doctor says we should stick with IV meds until we stop seeing improvement. So far we haven't stopped seeing improvement - we keep seeing MAJOR improvement - thank you Lord! When I went in to see my doctor on Tuesday I pushed myself to put on FULL makeup - foundation, powder, mascara, lip gloss, etc. I went into his office without the earplugs like last time, but for the first time ever I went without my sunglasses! I am handling flourescent lights better - still not great, but for short periods of time I can deal with them. It's the first time his staff has even seen my full face! Outside of a very quick eye check a few months ago, it's the first time my doctor has seen me without my sunglasses! He had to hug me twice because he was so happy for all of this progress! He just beams when he sees me - no oxygen, no wheelchair, no earplugs or headphones, and now - no sunglasses!

So, while I may feel like there's a pattern of 1 step forward then 2 steps back in my treatment, well, that's just not true. I hate that there's a couple of wrenches in the works - like poor kidney function and the gallbladder surgery. BUT when you think about where I was a year ago, or even just 3 months ago - WOW - I have come so very far! God might not have taken all the pain out of my life. He may not have made my path to recovery a smooth one - but He is healing me! I am just being impatient - or rather, being human. This has seemed like a very long journey to me, but I stop and think about how it might seem to God. I imagine that close to 17 months of treatment go by in a blink of an eye in God's time table. When we pray most of us ask God for something to happen. I know people who are praying for a job, or for their children to do well in school, or just for some peace in their lives, and when it doesn't happen within a few weeks we all think, "Well, I guess the answer to my prayer is just NO." We are so silly aren't we? I have just been praying for healing and I have been trying to tell God that I just can't take all of this anymore! But that's absurd since God's the one who has been carrying me through all of this anyway and He can get me through much more. Sitting back and comparing where my life was one year ago to where it is now - well, I have so much to be thankful for because my prayers are being answered. I may still have a ways to go, but sometimes if we step back and focus on our "big picture" we see that so many of our prayers have been answered. I know I've seen so many problems that I've prayed about all work out just fine.

So, yes, I do have to have another surgery and yes, I hate that I have to go through another set back. I hate that I have to go back to the drawing board as far as coming up with a new antibiotic treatment regimen. I hate that my kidneys aren't handling this very well. BUT how much happier am I that I can see such amazing progress? When I started writing this I did feel a little, "poor me...having surgery again" (that should be said in the voice of Eeyore, the donkey from Winne the Pooh - he has a great complaining voice). However, by the end of typing ALL of these thoughts, God has shown me that He is ALWAYS working - no matter if we can see it or not. In my case, I am getting to see His work - His healing me - and I am humbled to be so very blessed. I'll get through that laproscopic gallbladder surgery just fine and I will find out how much better I REALLY feel afterwards! I bet it'll make me even more thankful for what He has done!

Oh, and of course, I am always thankful for all of your prayers - they are being answered! I'll try and write on here to let you know when the surgery is going to be and again as soon after the surgery as I can. I can't wait to see what's in store next!

And, since it is time for trick or treating I thought I would post a picture from last Halloween where the patients in the clinic dressed up for Halloween. I'll post a picture of me from then and compare it to a picture taken of me this past week and you'll see the big difference!

Oh, and I'm a big fan of sarcastic humor - or in finding humor in sitations that aren't really humorous so last year I dressed up as Lyme Disease:

My shirt says, "I have Lyme. You got any tequila?". The lime green spirals of ribbon on the top of my hat symbolize the Lyme spirochete bacteria which are shaped like corkscrews. The two green monsters on my hips stand for the Lyme co-infections Bartonella and Babesia. Like I said, I find humor in the things most people don't find funny at all. But, honestly, wouldn't you rather laugh than cry? Or maybe cry laughing??? Also, I may feel like total crap, but when there's a camera around...well, I smile - haha! Oh, and that's IV Benadryl that I'm pushing into my PICC line.

Now - this picture was taken on my deck this past week before my doctor's appointment. I'm 15 pound heavier, have the ability to stand up longer, am outside without sunglasses (well, just for this picture anyway but it's a start) and I'm even wearing shoes with heels instead of comfy tennis shoes because the severe pain in my feet is not there anymore! God is SO good!!!

"Who is as mighty as you, O Lord? Your faithfulness surrounds you." Psalm 89:6 (NRSV)

"I lift up my eyes to the hills - from where will my help come? My help comes from the Lord, who made heaven and earth." Psalm 121:1-2 (NRSV)

"Pray for one another, so that you may be healed. The prayer of the righteous is powerful and effective." James 5:16 (NRSV)

"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17 (NIV)

Much love to you all!
K

Appointed and Disappointed

2010-10-14T13:05:00.002-05:00

I’ve been feeling disappointed lately. When I first started the IV Gentamicinin in late August I saw so many improvements in my health and my ability to do things. I started expecting more and more improvements and imagined what I’d be doing by now, the middle of October. I had plans basically and have been disappointed that I haven’t been able to follow through with them by now. I wanted to be getting out into the world by now, but my sound sensitivity is still so bad that I have yet to venture outside of the house. I’ve been in the house for 2 months now and I’ve been in a hole feeling sorry for myself about it. That leads to me being disappointed in myself for how I’m handling all of this. I feel like I’m not appreciating the things I can do, that I wasn’t able to do 2 months ago. I want the whole process to speed up! I’m disappointed that it I haven’t gotten well FASTER. I’ve just been disappointed.

I was thinking about being disappointed. I can’t watch much television or be on the computer too much because it zaps my energy, and I’m alone most the time so I have a LOT of time to think. I went from thinking about my being disappointed to thinking on the word disappointed. I thought about the many words there are in the English language that mean one thing and then if you add the prefix “dis” to the word its’ meaning is the opposite of the original word. For example, you can assemble something – put something together – and you can disassemble something – or take it apart. God was leading me on a “thought pattern” which is when I have no idea He’s showing me something – I’m just thinking, not wondering if there’s a point. These “thought patterns” lead to some of my most important observations, or rather they lead me to something God wants me to learn. God put it on my heart to share this with you so I wanted to explain that what you’re about to read is laid out exactly as it happened in my “thought pattern” so there will be some twists and turns as I get to a point…nothing new there I guess.

So, as I thought about the word disappointed, I started thinking about the word appointed as well. I think God wanted me to “research” those words. When I looked up the word appoint in the dictionary it listed multiple definitions or ways this word could be used. One definition was “to name or assign to a position” and it gave examples of how we use that word in this day and age, such as “to appoint a judge to a bench” or “to appoint a new treasurer”. But, the last definition was listed as “archaic” which suggests that many years ago, or even centuries perhaps, the word had a somewhat different meaning. That definition was “to order or establish by decree or command” and the example was “laws appointed by God” and that’s the definition I believe God wanted me to understand.

Then I looked up the true definition of disappoint and read, “to fail to fulfill the expectations or wishes of”. Another definition explained the meaning as “to defeat the fulfillment of (hopes, plans, etc.); thwart; frustrate”. If we use our modern day definition of appoint and disappoint we believe that the word disappoint would be to fail at a job or task we were appointed to. However, I think God had me read these definitions for the purpose of understanding that disappoint could also mean to fail at a task appointed by God or a command given by God. So if I feel disappointed then what task or commandment given by God am I failing at or not following?

When asked what the greatest commandment in the law was, Jesus replied saying, “Love the Lord your God with all your heart, and with all your soul, and with all your mind. This is the first and greatest commandment. And the second is like it: Love your neighbor as you love yourself.” (Matthew 22:36-39) Jesus later gives all Christians a task – often referred to as “The Great Commission”. Jesus said, “All authority in heaven and on earth has been given to me. Therefore go and make disciples of all the nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you.” (Matthew 28:18-20). So I had to think if I was not doing those things, not putting God first, not sharing God’s love, or not sharing God’s word. I realized I was failing at all of those things. I believe that is the real root cause of my disappointment. When you put your hopes on circumstances, things or people, you will most likely end up disappointed. When you place all your hopes and your trust in God you can’t be disappointed.

I realized that I had I had been focusing on getting well more than I had been focusing on God. I was placing more importance on what I could do to get well rather than what I could do to get closer to God. I was not loving my neighbor because I was too focused on how other people’s lives seem so much easier than mine – I was envious instead of loving. I also realized I had been shying away from writing entries on here, so I was not using the one way I have of reaching the outside world to spread the love or the word of God. Basically my priorities had gotten turned around again.

Then God hit me with something very hard. If I put the archaic definition of appoint with that second definition of disappoint the result is scary. The combination of those definitions would be “to thwart” the “commands or laws appointed by God”. Not just fail at the tasks and commandments, but to actually get in the way of them. It would mean to try to DEFEAT the fulfillment of God’s commands. WOW. I then thought, “I don’t get in God’s way!” – but after thinking on it I realized that I do get in God’s way. I get in His way every day! I was failing at the two greatest commandments AND the Great Commission because I was too busy blocking out what God wanted me to think about by focusing solely on what I wanted to happen in my life. He wants me to love Him with all my heart and yet too often I find that my heart is focused more on getting well and not on God. I hate to admit that I’ve also put things I want before Him at times, but I have. I’m letting my thoughts focus on other things rather than God. It’s not on purpose, but I can control it if I constantly bring my thoughts back to God. And when I’m busy feeling disappointed about what my life is like or feeling frustrated with my treatment I’m missing the opportunity to share God’s love. I’m even missing out on feeling God’s love for me. What’s even worse is that I find I might do these things several times a day!

We can all interfere with the instructions and commandments given to us by Jesus without even knowing what we’re doing. Keeping all of that in mind, we must realize that when we feel true disappointment it may actually be because we have thwarted or gotten in the way of God’s plans for us. We may have unknowingly defeated ourselves. We often pray and feel as though we get no answers or that God doesn’t hear us, but that’s not the case. I believe we are often too focused on what WE want to happen that we may completely miss what GOD is doing in our lives or where He is trying to lead us.

I don’t want to focus on my health instead of God because I will only end up frustrated. I’m doing all I can to get well, and that’s all I can do. I don’t want to be envious of other people’s lives because in all honesty I have no idea what their lives are like, they could be dealing with huge problems I don’t know about. I definitely don’t want to miss out on sharing God’s word with others because I know how important a true relationship with God is. My relationship with God is not only what gets me through all of my health obstacles – it’s what has kept me sane and pushed me through the hardest days! I want everyone to ask Jesus to live in their hearts and to ask that God direct their paths. Why do I want that? It comes back to those two words – we are all appointed to love God, to love others, and to share God’s word with others. If we fail at those things, well, it’s no surprise that we would feel disappointed in our own lives.

I’m going to share something about focusing our thoughts on God from the book, “Jesus Calling” by Sarah Young (the missionary who was in treatment with me in Kansas City). She writes the daily devotionals as though Jesus were the one speaking:

“Make Me your focal point as you move through this day. Just as a spinning ballerina must keep returning her eyes to a given point to maintain her balance, so you must keep returning your focus to Me. Circumstances are in flux, and the world seems to be whirling around you. The only way to keep your balance is to fix your eyes on Me, the One who never changes. If you gaze too long at your circumstances, you will become dizzy and confused. Look to me, refreshing yourself in My Presence, and your steps will be steady and sure.”

She references two verses as well:

“Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.”
Hebrews 12:2 (NIV)

“But you remain the same and your years will never end.” Psalm 102:27 (NIV)

I wanted to share one more verse that hit me today:

“I waited patiently for the Lord; he turned to me and heard my cry.” Psalm 40:1 (NIV)

I have to remember that a lot – to wait PATIENTLY on the Lord because He does hear my cries. And guess what…as soon as I finished this entry I went and put on some clothes. Then I brushed my hair and my teeth – I even dabbed on a little bit of makeup. I’m headed out the door of this house – I don’t know how I’ll handle being out in public, but God has given me the strength to go find out. You don’t get somewhere by sitting around. When we feel God pushing us, well, we have to push WITH Him instead of against Him to go forward. I’m going forward in about an hour. I’ll let you know how it goes as soon as I can!

Much love to you all-
K

***10/15/10 - Editor's Note***
I went out yesterday and it was WONDERFUL! I went to a bookstore and didn't have to wear earplugs. I wore sunglasses but not for the entire time I was in the store. My mom then took me to a clothing store and the music was SO loud. I put in my earplugs but it was still too loud. Amazing thing is that I didn't drop down and have a seizure! We went to another clothing store where the music wasn't as loud, I kept my earplugs in and I even bought a pair of jeans! It was about 2 hours of being "out and about" and it was GREAT! I took some Valium before I went but only 1/4 of the amount I used to take every day in Kansas City. I never even felt like a seizure was coming on :) I can't explain how excited I was to be out in public and how great it was to feel a little normalcy in my life. We're going to try and get me out of the house a couple of times a week for an hour or two at a time. But I also know that there will be days I won't feel up to getting out and I can't let those days kill the joy of my really good days. I am thanking God for such a wonderful day!

How to get out...

2010-09-30T13:30:00.001-05:00

Have you ever found yourself in a situation where you thought to yourself, “How did I ever get here?” I know there’s been plenty of times, and lots of different situations, where I’ve asked myself that question. In reality I should have been asking myself, “How do I get out of here?” I have found that when things get hard it’s a lot easier to sit and think about what could have caused my problems than thinking of an actual solution to them. Over the past few years I have asked myself how I ended up in this bed countless times. This particular situation is different in that I couldn’t help being sick, but the logic is the same. I focused on how “unfair” things were. I thought about how other people had much easier lives. Basically, I felt sorry for myself and I kept thinking about how bad things had gotten. What I didn’t do was stop myself from that train of thought and think, “What do I need to do to get out of here?” because that is the more important question.

I think God has allowed me to go through all of this for many reasons, some of which I will never know. However, I do know some of the things it has made me think about and often times work towards changing. Just for starters, it has changed who I am, how I act, what is important to me, what kind of life I want to lead, and what kind of people I want to surround myself with as I go through this life. Quite simply, I will look back on this time, on these years of sickness, and I will say, “That is when my life changed for the better.” Might sound odd, but I know that I was supposed to go through ALL of this in order to figure out who I was and more importantly, who God wanted me to become. I have to hope and pray daily that I am getting closer to becoming who God wants me to become because honestly, it’s so easy to fall into the trap of feeling sorry for myself. Even when I see so many improvements I often wonder why things aren’t happening faster. I’m like a child who can’t appreciate all the wonderful toys I already have because I’m too busy wanting the toys I don’t have. So, I pray that I am sticking to the physical AND mental course God has set for me so that I don’t skip over anything. God wants me to see how many prayers have been answered for me and some days I am overcome with just how many He has answered. But, I’m human, so on other days I focus on the prayers He hasn’t answered for me. Silly thing to do since you never know what prayers God will answer or, maybe more importantly, WHEN He will answer them.

Robert Frost wrote, “The best way out is always through.” I’ve thought a lot about that quote over the past week or so. I’ve wondered if I’m doing what I need to do, if I’m doing all I can do, to get better sooner. When I’ve suffered a set back, I would feel as if the world was ending and would get so upset. That’s when I thought about the quote from Robert Frost. There is no way to speed things along, there is no magic potion that will have me up and out of this bed and leading a “productive life”. It took years to get that sick, it’s taken a year and a half of treatment to get me feeling half-way human. It only makes sense that I won’t be able to jump up tomorrow, get dressed, and go drive myself somewhere. So, it’s not that the “best way out is always through” – it’s that “through” is the ONLY way out! So, I continue to fight to get better. The fight is getting easier, but sometimes that makes it more mentally frustrating. I am feeling stronger – I do want to go and do a million things – but I simply have to wait and slowly build up my strength. I still have other diseases to fight. I will get there, but not by force. I will get there by faith. I know God can do anything and I know He has led me through all of this. He has not stopped leading me nor will He ever give up on me. I need Him every day. I don’t just need Him for getting me through another day when I feel horrible. I need Him on good days too. But, I always thank Him for getting me through those MISERABLE days. I need to focus more on thanking Him for the “Hey, I don’t feel like death today” days as well.

I’ve had some set backs lately. The anti-parasitic medication has not been easy on me, but I’ve been through much worse for sure. I’ve had more of the fevers again, felt weaker, had to slow myself down and keep myself from trying to “push through the pain”. But, I’m doing so much better than I was 2 months ago. I have to keep reminding myself that it doesn’t happen overnight. It takes time and that’s okay. I need to realize that God has always had a plan for my life and while I may think things are taking too long, He’s always had the timeline planned out. I need to stop thinking about “how I got here”, to stop feeling sorry for myself, to stop comparing my life to the lives of others – in short, I need to just trust God. I guess that’s something we all have to work on doing every day. We like to think we are in control of so much, but in reality, God’s in control and we need to seek His guidance as to how to get through each day.

“I will bless the Lord at all times; His praise shall continually be in my mouth.” Psalm 34:1 (NRSV)

“He is not far from each one of us. For in him we live and move and have our being.” Acts 17:27-28 (NIV)

“I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.” Psalm 4:8 (NIV)

I again want to thank you all for your prayers and for just keeping up with me. The computer is my way of staying connected to the world and I’m glad there are people who want to read my ramblings as I journey along.

Much love-
K

Quick update

2010-09-24T14:01:00.002-05:00

I feel bad for not upadting sooner. Just wanted to say I've been doing well - getting out of the bed a lot more, building up muscle mass in my legs! Just being able to do a few things out of the bed perks me up so much! There are still days where I don't get out of the bed - today being one of them - but I feel I'm improving slowly but surely.

The bad thing about these diseases is that once you start feeling stronger there's always another disease you need to hit! So, since I'm tolerating the Gentamicin IVs so well we started me on the supplements Para Cleanse and Colon Booster. I know it sounds weird to say I'm killing off parasites in my body, but did you know over 80% of people have some sort of intestinal parasite? Most of those people never even know they have them because their immune systems can handle things like that. But, when you put parasites with other illnesses that weaken your immune system there is a problem. So the past week or so has been difficult. The toxin level in my body has risen due to the die off of some of the parasites. Pair that with the toxins from killing off the other diseases with the IV anitbiotic and you get someone who's very tired and weak feeling. I force myself to get up and do things some days, but some days I simply can't. I also know I push myself way too much some days, and that ends up with me in the bed for a few days. BUT, it's a signal of SO much progress that there are days when I CAN push myself. Before I may have had the desire, but not the physical ability to get up and do anything. I am improving, it's just a slow process.

I don't know if I ever mentioned this on here but I have daily fevers. I've had a fever every single day since March. Most days they go anywhere from an elevated temperature 99.5 or so up to 101 degrees. However, since my normal body temperature is low (usually 96.8) even going to 99.5 is hard. I've been seeing some improvement in the fevers lately. They haven't gone away, but they aren't going as high every day. That's a really good sign. But, if you want to know what a "good day" is for me, imagine having the flu, mono, a fever, and a stomach bug all at the same time - well, you get the idea...haha. The Lyme, Bartonella, Babesia, etc. take such a toll on me that a good day is when I feel "half-way sick" but I am improving and I am praying that soon my good days will actually be closer to what healthy people's good days feel like!

I'm working on another post but God's not done letting me know what to say. So, in the meantime, I figured I would let you know what's going on with me health wise. I'm improving, I'm still fighting, and I'm still in need of prayers to get through all of this. I appreciate each and every one of them!

"God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so tht you may be able to endure it." 1 Corinthians 10:13 (NRSV)

He has not tested me beyond my strength, He has provided relief to me, He has carried me through these things, He is faithful and will provide a way out for me. God is good all the time, all the time God is good.

Much love to you all-
K

Climbing up from the valley...

2010-09-08T14:38:00.002-05:00

I haven’t written any updates lately because, and yes I realize how ridiculous this sounds, I haven’t wanted to (you guessed it) “jinx” it. When will I learn to just trust God and understand that I can’t “jinx” anything? Another reason I didn’t write about some of my big improvements is because the diseases I have are different than most in the fact that you can go from really good to extremely bad very quickly. I guess I felt like people might not understand if I wrote about feeling better then had to turn around the next week and explain that I felt bad again. I struggled with this entry more than any other I think. However, after talking with God I realized I have had so many wonderful people praying for me and they needed to know how many prayers were being answered. I also realized that the people who have continued to read this would understand if I had to come back and explain that things had gotten bad again. God made me see that if I didn’t write about my progress then He wouldn’t get the full glory He so rightly deserves and none of you would get to feel that amazing feeling that comes when you see, or read, about prayers being answered. So, to God be the glory for what He’s done for me.

In my last entry I wrote about doing laundry and accomplishing a few other tasks that made me see how much better I was getting to be able to do any of that. However, I also wrote about how frustrated I got when I realized that I wanted to do MORE and I couldn’t because my body has been in bed for almost 2 years straight. I also wrote about how hard treatment itself is on the body. I wanted to get up and do more but in all honesty, I couldn’t because I don’t have the muscles to do things anymore. My calf muscles feel, and look, like they aren’t even there. I understood that my body couldn’t do more because of what all I’ve been through.

I prayed and just talked to God about how I would get some strength back. After thinking about what all I’ve been through I realized I basically need physical rehabilitation. So guess what…I started my own rehab! I actually got on our elliptical machine downstairs and went for 3 minutes one day. Of course, I didn’t have any incline or resistance turned on but still – I was in motion for 3 minutes! Then I started to slowly increase. My husband would laugh at that last sentence because my version of slowly increasing was to go from 3 minutes to 7 minutes then to 15 minutes. I am so OCD about how I work out on that machine. I mean, the screen tells you how long you’re on, how many rotations you’ve done, how fast you’re going, how many carbs you’re burning – who wouldn’t start staring at numbers and pushing harder and making goals instead of just doing 3-5 minutes every day – haha! I have to keep my pulse oxymeter on to make sure my heart rate doesn’t go too high but that’s really the only number that will stop me! I’ve said before that we won’t know the extent of my cardiac damage for probably a year or so after treatment. My heart still has to work hard just for me to stand up since my blood pressure bottoms out when I stand up. If I stand up and stay in one position I will pass out the only question is how quickly it will happen. SO, I am watching my heart while I start this rehab process. My heart rate when I’m sitting is usually in the high 60s to low 70s but when I stand up it’s around 120. I don’t want to push it too hard so I make sure that it doesn’t go above 140 when I’m on the elliptical machine.

I am still having to deal with some emotional herxes from the IV medication. I find myself frustrated easily so I know I need to keep bringing all of this to God. Some days it’s hard though. It’s as if my mind wants to be mad at God for all I’ve had to go through, but my heart knows that He’s bringing me through all of this. He is the reason I’m getting anywhere. I have to stop thinking, “Why did I have to get so sick? Why did I have to miss out on the past 5 years of my life basically?” and I have to start praising God for all He’s doing and what I know He will continue to do for me. I am such an impatient person and I am so ready to be healthy and “get on with my life” that I have a hard time thanking God for each and every improvement. But I’m trying to praise Him more and question Him less! I think most people probably have a hard time with that! There are so many questions we have about the bad things that happen in this world that we often overlook the multitude of wonderful things God does for us on a daily basis!

I’m going to be honest and explain that just 2 months ago things were extremely bad with my health. There were a few nights that I worried I just wouldn’t wake up in the morning. I had such horrible pain and was on oxygen almost all the time. I was too weak to walk the 5 steps to my bathroom and would have to support my weight on furniture or walls to get there. It was one of the darkest times of my life. I told my husband that over the past 5 years I’ve gotten used to continuing to fall lower and lower. It seemed like I was going downhill and each time I would think I hit the bottom, well, I would fall even lower. So, for a long while I think I had fallen off the mountaintop and had found the deepest part of the valley. I walked with God there for a long time, or rather God carried me through that valley for a long time. I have always believed that you learn more from your time in the valley than you do from time on the mountaintop. When you’re on the mountaintop you don’t feel that deep need to lean on God for every single thing. But, when you’re in the valley God is the only thing you have to cling to and your dependence on Him grows daily. I would not be the person I am today if not for my times in the valley. As much as I hate to look back at all the times in my life when I was unable to do things because I was sick, well, from my current perspective I realize those were the times that God was working on me the most. His greatest work in me has come in the past 3 to 5 years as I have struggled so much but learned to lean on Him so much more.

Now, here I am with good news. Here I am walking around my house, taking showers, doing laundry, getting on the elliptical machine – can you believe how fast God has started to bring me out of the valley? But I must admit I had another thought about getting out of the valley. Falling down from the mountaintop did not take work – it just happened. However, climbing out of the valley is another story. God will be the one who gets me out of the valley but I must be active in my own rescue – I must push myself to take the next step. I must force myself to remember what it was like to have a “real life” where I could function somewhat normally. Falling down happens to you but getting up is something that requires effort. Of course I am not alone in this effort! God is with me as I climb up the side of the mountain just as much as He was when I was falling in the valley. The difference to me will be how much more I appreciate the view from the mountaintop after spending so much time in the valley.

I have another story before ending this long entry. While I was in Kansas City I had the pleasure of meeting another patient there named Sarah Young. She and her husband have been missionaries for over 20 years. I must say she radiates God’s love – it just shines right through her. And as much as I hate that we had to meet under such horrible circumstances with both of us going through IV treatment, getting to know her was a blessing. If you’re wondering why I’m using her full name it’s because she’s also an author who has written a wonderful daily devotional book called, “Jesus Calling”. She gave me the audio CD version last August after I had gone through the emergency surgery where I lost my right ovary. I was too sick to be able to read but she knew that listening to it might help me. She had been sick for a long time too and this book came out of her personal writings in her prayer journals. As years went by she started focusing more on listening to God and writing down what she thought He was trying to share with her rather than just writing down her own words. She’ll tell you that her writings are not inspired as Scripture is, but they helped her grow closer to God. I started to listen to this book again lately as I went through my morning IV treatments. As I’ve seen improvements in my body each day, the book started to take on a new meaning to me as I listen to it this time versus when I listened to it at this time last year. I didn’t realize that lately I started asking God not only, “Why me? Why do I have to go through this?” but also, “When is this going to end? Will there ever be a day when I can say I’m healthy?” So, one morning as I listened, I heard the devotional for that exact day and it hit me hard. I wanted to share it with you:

“Grow strong in your weakness. Some of My children I’ve gifted with abundant strength and stamina. Others, like you, have received the humble gift of frailty. Your fragility is not a punishment, nor does it indicate a lack of faith. On the contrary, weak ones like you must live by faith, depending on Me to get you through the day. I am developing your ability to trust Me, to lean on Me, rather than on your understanding. Your natural preference is to plan out your day, knowing what will happen when. My preference is for you to depend on Me continually, trusting Me to guide you and strengthen you as needed. This is how you grow strong in your weakness.”

She wrote that after reflecting on the following verses:

“Now listen, you who say ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’” James 4:13-15 (NIV)

“Trust in the Lord with all your heart and lean not on your own understanding.” Proverbs 3:5 (NIV)

“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:28-31 (NIV)

I used Isaiah 40:31 in my August 21st entry after being able to go without the wheelchair to my doctor’s office. I use that verse a lot. It’s one I cling to and love to read. I now have the hard copy of Sarah’s book as well and lately I either read or listen to the CDs most every day. I read it knowing that she wrote it during the time in her life when she was sick and could not find help. I read it knowing that as a missionary of 20+ years, she was hit by the same diseases that I had been hit with. I read it knowing that we will never know the answer to “Why me God?” and that our belief in God and our works here on earth do not keep us from experiencing bad things. However, our belief in God does help us get through those bad things and sometimes those bad things inspire us to do great works here on earth that can help others. Finally, I write this as I struggle to climb out of the valley and I know I must continue to lean on God as I begin my ascent. Thank you dear Lord for blessing me with so many improvements in my life!

(Side note: To those who know me personally and who want to comment on one of my entries please do not use my full name. I have left this blog open to the public so that anyone could read it whether they know me or not and that is why I use “K” when I write or “M” when I talk about my husband. I have pictures on here and I think that’s as much as I feel safe sharing. I’m sure you all understand and I truly love when I get comments! Also, if your comments have been deleted it is because my name was used so please don’t take offense.)

Much love-

K

Thanking God for laundry...

2010-08-28T12:53:00.001-05:00

I am so very human and God made that crystal clear to me this week. He showed me just how impatient I am. We all know the “give them an inch and they’ll take a mile” phrase. We use it to describe people who are never satisfied with what they have. People who ask for something and when they get it they immediately ask for something else, something more. We can easily spot that in someone else but we rarely notice it in ourselves. This week God showed me how I too want to “take a mile”. I raved about the progress I got to see last week when I went to the doctor’s office. Then I had a few really hard days where I went back down and I was crushed. In my last entry I explained that I believed God let me have that really good day so that I might see a light at the end of this long tunnel. However, I am human and after that really good day I wanted MORE. I wanted to get up and clean my house, or better yet to get out of my house. I wanted to go out in public and not be bothered by noise or lots of people moving around. I wanted to drive my car. It’s been almost 16 months since I have driven at all. I wanted to be a “productive member of society” again. I simply wanted MORE!

This week I got a little taste of MORE and I liked it! Since I have been on the Gentamicin I am happy to report that I have not had any allergic reactions or seizures during treatment. I haven’t had a full grand mal seizure in a month! To God be the glory!!! I asked M if I could try to go without a “baby sitter” since treatments were going well. I haven’t been able to be stay home alone for almost 2 months. I get tired of feeling like people have to arrange their lives around me. If M had a business meeting my mom would have to give up her day to come here and take care of me. I wanted to see how I did staying by myself. So, we decided that when M went to the grocery store I could stay home alone. I did very well. I felt up to the challenge of taking care of myself for longer periods of time. So when M had 3 business meetings scheduled Tuesday I stayed at home alone. But this time I actually did something – I did LAUNDRY!!!! I washed 3 loads of laundry over a 7 hour period. I would put some clothes in the washer and go rest for awhile and then when I felt up to it I would go put those in the dryer and start a new load in the washer. I knew that if I happened to wash some and then not feel like putting them in the dryer that M could do that when he got home. I was so very happy when M got home and I showed him that not only did I wash 3 loads of clothes – I hung them up and put them away! I felt productive. I felt like a help and not a burden. I felt GOOD! The only bad thing was that getting up and moving showed me that the past 2 years I’ve spent in bed have taken a serious toll on my body. I have no muscle strength at all! I know it will take time to get that back, but I did laundry and I was pretty amazed that I did it! That night I had some really bad muscles jerks and spasms, but it wasn’t a true seizure. I realized that if I was going to be up and moving I needed to get back on some Valium so my brain wouldn’t go on overload and start misfiring signals at the end of the day!

Now we get to the part where I’ve been given an inch but want to take that mile. Wednesday I took the Valium and then changed the sheets on the bed and put the dirty ones in the wash. I then proceeded to take a shower and wash my hair. That’s really why I changed the sheets because after my shower I wanted to climb into a clean bed! I even washed the blanket on top of the bed! I didn’t move around as much that day and I did get tired much faster, but I felt good about what I had accomplished. The Valium did the trick and I didn’t have any seizure like muscle jerks that night – HOORAY!!! On Thursday I took my Valium and swept, well “Swiffered” actually, the bedroom floor. I eased into the hallway and by that point I realized I was pushing too hard and needed to get back in the bed.

I did get back into my bed, but I was frustrated. I wanted to clean the floors in the whole house. I really wanted to clean the whole house. That’s my problem. For years I have battled with alternating “good days” where I could do lots of things to “bad days” when I would have to stay in bed unable to do anything really. Living like that caused me to really push myself on a “good day” because for all I knew the next day would be a “bad day” and I could be stuck in bed for a week. I noticed I was back in that mindset this week. I had to stop and tell myself that I physically could not handle my old routine. My body has been through so much over the past year or two. While I am seeing amazing progress, I have to force myself to take things slowly or I’ll make things worse! So Friday I stayed in bed. I really didn’t have a choice because my body wasn’t feeling like doing anything that day. Again I was frustrated. In my heart I want to go to the grocery store, I want to cook dinner, I want to clean the house. Simply put I want to be a good wife and take all of those burdens off my husband’s shoulders. I want to be productive.

That’s when God got to me. He made me realize that I was making HUGE strides from where I was just two weeks ago but I wasn’t being truly thankful for them. He was answering my prayers and I was able to do things but instead of being thankful, you guessed it, I wanted MORE! God made me stop and realize that while I may not be able to take ALL of the burdens off of M’s shoulders, I did remove one of them. I did laundry. Then I did something I never thought I would do – I thanked God for laundry! I used to hate doing laundry and I complained, sometimes out loud and sometimes just in my head, any time I put a load in the washer. God showed me how grateful I should be to do laundry. Doing laundry requires some things we probably all take for granted. First, being physically able to complete the task is a blessing and I never thought about that until now. Second, most of us have washers and dryers that do the majority of the work themselves which is a blessing when you think of all the people in this world who don’t have such luxuries. Finally, doing laundry means we are blessed simply by having clothes to wash.

I remember telling God that as I healed I didn’t want to take anything for granted anymore – even the little things. But, as I said, I am human and while I did thank God for having a couple of good days and feeling accomplished, I quickly got frustrated with not being able to do more. Now God has shown me just how amazing my week has been. I did laundry, I took a shower and washed my hair, I changed the bed sheets, I “swiffered”, and I was able to stay home by myself! Thank you dear Lord for giving me that strength! Glory be to God for the healing He is performing in my body! I’m tired today but I’m happy because this week I did laundry. Only God knows what my body will feel up to doing this coming week. He’s showing me how to appreciate what I can do and not worry about what I can’t do. This journey of healing is on His time table, not mine. Instead of being frustrated by that I should be comforted by it because I prayed for His will to be done and His ways are the best ways. He also made me see the fear I have about healing. You may be wondering what there is to fear about being healed. Well, I didn’t know myself until He made it clear to me. Basically I have been sick for so long that I don’t know how to live like a healthy person. I told M I had no idea what I would do when/if I got well. The doctors say that I need to take a year to allow my body to detox from all these drugs and to let my body rest from the beating it has taken during treatment. God made me realize I was getting ahead of myself. If I pray for His will to be done then I should not be worried or fearful about my future. I should rest in the knowledge that He will show me what to do as I forge ahead and He will lead me into the next phase of my life. I have no idea what His will entails, but it could very well be that it involves me feeling better than I ever have before. Wouldn’t that be amazing? No matter what though, He’s told me to be thankful for laundry. So, from now on, every time I load that washer I want to make sure I stop and thank God because He’s blessed me so much!

Finally, I wanted to share the following excerpts from the book, “100 Days in the Secret Place” which were written in the late 1600s:

“Do not waster your suffering. Let suffering accomplish what God wants it to in your life. Never get so hard that you suffer for no reason and for no purpose. Paul says, ‘God loves a cheerful giver.’ How much He must love those who cheerfully give themselves to His dealings.” – Archbishop Francois de Fenelon

I need to focus on cheerfully giving myself to God and what His will is for my life. Focusing on today and not pushing towards what I want for tomorrow.

“When you seek God’s will alone, you find it everywhere, and you cannot go astray. Wanting what God wants always puts you on a straight path. The future is not yet yours; it may never be. Live in the present moment. Tomorrow’s grace is not given to you today. The present moment is the only place where you can touch the eternal realm.” – Archbishop Francois de Fenelon

And finally one simple verse that I should read every single day:

“Give thanks in all circumstances for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:16

Much love to you all –
K

Walking without fainting...

2010-08-21T08:15:00.001-05:00

So far I’ve been tolerating the Gentamicin fairly well although getting back in the routine of twice daily treatments has been difficult. I had been questioning whether or not we made the right decision to go back on the IV antibiotics. Don’t you hate when you make a decision based on rational facts and then turn around and second guess yourself once you act on your decision? I usually don’t do that but the IV drugs make me question just about everything I think, say, or do. I know that M and I made this decision because we both felt God leading us to resume treatment so I hated feeling like I wasn’t trusting our decision. I think those thoughts were also mixed up with being scared of going back on treatment. Treatment is a catch 22 basically. When I stopped many of my symptoms returned or got worse. However, going back on antibiotics can also exacerbate symptoms. Then I also have to worry about side effects of the drugs as well as the ever dreaded “herx” reaction. For those who haven’t read much of this a Herxheimer reaction occurs when the antibiotics kill off a lot of bacteria at once which creates a build up of toxins in the body. Many people think a herx can only manifest physically causing headaches, muscle and joint pain, fevers, etc. When I was in Kansas City I found that it’s possible to also have mental or emotional herx reactions. These can cause of severe mood swings, horrible depression, anxiety, confusion, and even rage. Basically it doesn’t matter if you’re on treatment and killing bacteria or off treatment and dealing with recurring symptoms because all in all Lyme, Bartonella, Babesia and other co-infections suck the life out of you.

There is good news to report and I’m so happy about that! Monday we had to go see the doctor and I felt like I needed to try to push myself to “be normal” by not wearing ear plugs or headphones. I brought them along just in case I needed them though. I also told M to park in the parking deck rather than use the hospital valet service because I wanted to try walking instead of using a wheelchair. I didn’t even feel very anxious about going. I wasn’t pushing M to leave 20 minutes early nor was I pacing around making sure I had everything I needed. I felt that was God giving me the courage to try and venture into the outside world. For the first time in over 10 months I walked outside without ear plugs and headphones. The noises were loud but I wasn’t ready to scream or have a seizure. I walked into the hospital and didn’t jump at the sound of people’s voices or even the beeps of the elevators. Notice I keep writing, “I walked” because that in itself was a major deal! We entered the doctor’s office and his nurse didn’t even recognize me! I still had on sunglasses to deal with the lights but for the first time the doctor and his staff saw me without a wheelchair, without headphones, and even without an oxygen tank! I was simply giddy about my progress! I now realize how bad things have been when going to the doctor’s office without the aid of a wheelchair, oxygen, or noise cancelling headphones makes me so excited! After the appointment M and I were smiling from ear to ear because these were such huge steps for me to take.

I knew God was responsible for showing me such progress. I believe that even though I couldn’t tolerate the Vancomycin, it did kill off some bacteria and the small amount of Gentamicin in my system had helped as well. I started thinking about the possibility of having some kind of life again. I dreamed of getting out of this house and going places. M and I felt like we were seeing a small bit of light at the end of this long tunnel! That’s why the herx I started having on Wednesday brought me down so low. I had just seen progress and 48 hours later I was feeling so sick and unable to even control my emotions. I was crying and asking M repeatedly if I could just quit treatment. It’s so hard to wrap your brain around the concept of how making progress in killing off bacteria can make you feel so horrible. The emotional side of a herx is the worst part for me. I can handle feeling like crap but being unable to stop irrational thoughts, anxiety or anger is extremely frustrating for me and I know it has to be so very hard on M! By Thursday I was very depressed. I wanted to feel like leaving the house again. I wanted to catch a glimpse of “real life” again. I didn’t want to go back into the hole so to speak.

Then yesterday I realized something. God didn’t allow me to have such a good experience on Monday just to cruelly strip it away from me a couple of days later. I believe He showed me progress on Monday so that I could see what I was fighting so hard for! Perhaps He knew I needed to make such strides in order to handle the next 2 to 3 months of IVs. I’ve been on IVs for 14 months now and I want to be off of them so much! I am simply dying to get this PICC line out of my arm as well! But I have to hold on and ride out the rest of this journey if I’m going to be able to function in the real world again. God is with me and I know He will pull me through the next few months. The doctor said I should stay on Gentamicin for as long as we see progress. I’ll take a break for a day or two after a few weeks and see how I feel then. I pray I’m able to do even more by then. Although being outside without headphones was a huge step, I want to be able to be out in the world and not be aware of every day noises. I made it through without headphones but I was very aware of every noise I head. God could be showing me that His plan for me might possibly include me feeling better than I ever have before. I pray that is the case.

So, I write this as my IV bag drips away. I write this as I try to control my thoughts and cling to hope. I write this as I continue to be a huge “work in progress”. I write this as I feel such thankfulness for any and all improvements. I write this in awe of how God works in this world and how much He is working in me. This process has taught me so many things but one of the main things has been to never take anything for granted. I pray that as I improve and after I’m done with treatment that I don’t forget how lucky I am. I want to feel fortunate when I’m able to walk instead of using a wheelchair or when I’m able to hear everyday sounds and not immediately have a seizure. I want to remember what it was like to be stripped of everything so that I fully appreciate whatever I am able to do when I stop treatment. That’s a hard thing to do because I know just how easy it is to take things for granted. I know because even in my situation I am so human and don’t always thank God for what I do have. I may still be going through the hardest time of my life but God has still blessed me beyond measure! He has given me a loving family and good friends who pray for me every day. Not to mention I think I have the best husband on earth and feel extremely fortunate to be able to spend my life with him. We both feel as though we have gotten a good lesson in the meaning of the marriage vow to love each other “in sickness and in health”! And finally, I’m thankful for you. I am thankful for anyone who takes the time to read my rambling thoughts, who prays for me, and who lets me know they are with me in spirit as I go through all of this. Thank you from the bottom of my heart!

Finally, one of the verses that I love so much and cling to throughout all of this:

“Those who wait for the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” Isaiah 40:31 (NRSV)

And I did just that on Monday – I walked and I did not faint. That, my friends, is no small miracle and I will not take it for granted!

Much love-
K

And then there's Plan B...

2010-08-11T09:52:00.000-05:00

I wanted to write an update sooner but was not able to do so. I had a bad reaction to the Vancomycin every day that I tried to take it. When my lips and tongue started to swell we knew I had to stop the drug. This was so frustrating to me because I want to be able to get back into “treatment mode” and get these IVs over with sooner than later. For now I just have to use what has become the mantra in my house lately – “It is what it is.” There is nothing I can do about setbacks and getting upset won’t help anything so it was back to the drawing board to see what we would try next.

We did our own research and the doctor did his and we came up with trying Gentamicin which is another antibiotic that fights Bartonella well, but it’s not in the same class of antibiotics as Vancomycin. We think it will be easier on my body but, as with all IV antibiotics, there are serious risks with it as well. When you are on these drugs, no matter which ones, you have to have weekly blood work done. I have a basic CBC (complete blood count) , a chemistry panel (tests levels of sodium, potassium, liver function, kidney function, etc.) and a test checking how quickly my blood clots to make sure I’m on the right dose of blood thinner. Now that I’m on Gentamicin I will also have a weekly test to check the levels of the drug in my body and I THINK this is due to the fact that it can cause kidney problems, but I’m not sure. Treatment is hard because it’s a very fine line between taking enough drugs to kill the bacteria but not so much that you overload your body and cause damage. It is definitely a balance of risks versus rewards. I started the Gentamicin on Monday and started with one dose a day until today. I’m taking my morning dose as I type this and in 10 hours I will take my second dose. We’re praying all goes well as I start into my new drug and new routine.

My body is tired. No, my body is actually exhausted. I’ve been hitting it hard with all of these drugs and it’s just worn out. I wish I could rest more but sleep eludes me. My central nervous system is so overloaded and out of whack that my brain simply won’t allow me to rest properly. I’m still fighting off seizures and I have excrutiating nerve pain that feels like an electric current is running through my body. I’m tired of this fight but I know it will be worth it if it leads to my healing. I won’t know how much permanent damage has been done to my brain, heart, nerves, etc. until I’m off of treatment and even then it can take up to a year for my body to recover. I may see a lot of improvement in the first few months after stopping treatment, but I will have to wait for a year to see what all treatment has done for me or done to me. My prayer is that I can handle this new IV antibiotic for 8 to 10 weeks then switch to IV fluids for 6 weeks and hopefully see enough progress to finally get my PICC line pulled and switch to oral medications.

I know God is with me all the time. I know that He is aware of every ache and pain in my body just as well as He knows my heart. I try to focus on that fact. I try to see all of this immense pain that I go through as part of a much bigger plan. I want all of this to make me a better person. But, at the same time, I’ve been crying out to God a lot. I’ve been trying to put my foot down and tell Him that I just cannot take anymore. It’s humorous that I try and “put my foot down” with God isn’t it? People have told me that reading about all that I’m going through and seeing me cling to God during this time has reached them. They say it’s made them see how to get through their own struggles. I am aware though that if people draw closer to God because of what I write, well, it’s because of God not because of me. When people tell me these things it humbles me. It humbles me to think that God is using my life to reach others. I do admit that there are many days when I’m going through the pain that I ask God, “Are you sure there isn’t another way for me to reach these people? Is it a requirement that I go through this to do so?” and I also say, “God, I know it’s selfish, but I’m beginning to not care about reaching others. Can’t you just heal me now and let me tell people about the awful years I endured and how You were the single reason I got through it all?” I feel so bad about that. If God is using me in ANY way shouldn’t I feel honored?

I wish that I could handle these trials like Job handled his or like Paul handled his. Paul talks about how he is content NO MATTER the circumstances because he can do everything through God who gives him strength (Philippians 4:11-13). He wrote that while he was chained in a jail cell for teaching people about God and how His son, Jesus, walked the earth and then died for our sins. He was in JAIL because he was trying to reach out to people and was willing to risk his life to spread the gospel. We have never known what it would be like to be persecuted for our faith because we live in a country where everyone is free to practice whatever religion they believe in. What’s sad is that even though we don’t have to risk anything to tell people about Jesus most of us don’t do it very often. I lump myself in with that group because before all of this happened, I had a relationship with God but was never sure how to talk to others about Him. I praise Him more when I write this than I did before. I realize that I praise Him more BECAUSE of what I’ve been through and what I continue to go through. Hmmm, I may have just answered my own questions. I simply don’t praise God enough for the good things in my life while often blaming Him for the bad things. I should simply be thankful that while I may be going through a lot, He has yet to give me more than I can bear. There have been a couple of times lately where I’ve been in a lot of pain and have cried out to Him, “God I cannot handle this pain on top of everything else. Please take this from me!” and right away one of my pains will ease. I’m not miraculously healed completely, but He definitely lifts whatever my current burden is and I feel Him lift it from me.

I feel like God has plans for my healing. Honestly I feel that it won’t be long until I do see some major improvements. Maybe a few months but that’s not long at all compared to how long I’ve been suffering. I do believe He has good things planned for me. I’ve said many times before that God reaches me the most through my writing. It’s when I write that He shows me things. So I guess even my entries on here serve to help me just as much as, or perhaps even more, than they might help or reach any of you reading them. When I start to write my updates I often think, “I’m just going to write about what’s going on physically and not put the pressure on myself to write about God.” What’s funny is that those are the entries that end up getting the most responses. That’s when I know it’s God that worked through me and that reaching those people was definitely not my own doing. I’m starting to see now that while what I’m going through may be very hard, I’m not stuck going through it alone. God is the one who lifts me up and sees me through. No matter how bad things may get in my life, or in your life, if we call on God to see us through, He will do so every time.

“Do not fear, for I have redeemed you; I have called you by name; you are mine.” Isaiah 43:1 (NRSV)

“The Lord will be your everlasting light, and your days of sorrow will end.” Isaiah 60:20 (NIV)

Again I thank you for your continued prayers and support. In fact, I can’t thank you enough.

Much love-
K

Pushing on and going forward...

2010-08-01T16:08:00.000-05:00

So we’ve got a new treatment plan. My symptoms flared while I was off the IV antibiotics. We knew that I needed to get back on them but we weren’t sure which one would work best for me. During this time God led me to talk to M about our being more active in creating a treatment regimen for me. We both started to research more and more about Lyme, Bartonella, Babesia, and other co-infections. While my doctor in Kansas City thought the Babesia was the likely culprit of my seizures, our research pointed us in a different direction. Lyme and Bartonella both attack the brain. They wreak havoc on the central and peripheral nervous systems. Bartonella in particular can cause seizures. This made more sense to us because my seizures never went away when I was treating the Babesia. We ordered a book that included treatment plans of 13 Lyme literate physicians. They discussed everything from proper antibiotic treatments to supplements to diet plans. We began to see a pattern in their treatment protocols. Then I told M we should really look into the treatment protocol of Dr. Burrascano who is considered one of the 3 pioneers in research of these diseases. He helped found the International Lyme and Associated Diseases Society. He’s also the author of the group’s treatment guidelines which he first wrote in 1984 and has updated 16 times to include the latest research findings. M and I both poured ourselves into research. Through Dr. Burrascano’s guidelines we found the two antibiotics he prefers to use in treating Bartonella but I’ve had serious side effects on one of them and the other is an antibiotic I had a slight allergic reaction to the oral form so we didn’t want to chance that with the IV form. We then went back to the drawing board and found that he uses Vancomycin when other IV antibiotics can’t be used. Vancomycin is a great antibiotic to fight infections but has a high level of toxicity and therefore is a “last resort” for some patients. We decided that it would be the best drug for me to use and in order to keep the level of toxins down we planned to do “pulse therapy”. Pulse therapy is when you do IV antibiotics for 4 days of the week and then IV fluids for the remaining 3 days to help rid the body of toxins. We had discussed with my doctor that we wanted to research some treatment options and then discuss them with him to hear his thoughts. He talked with M at length and agreed that while Vancomycin does have risks, my situation warrants taking those risks.

Having the antibiotic plan down we then researched supplements and diet plans that other Lyme doctors use. I’m now taking a Vitamin B complex, Vitamin D, and Vitamin K. I’m also taking an Iron plus protein pill to help keep my red blood cell count up. I take Iodoral to help my thyroid and Curcumin to help with cognition, memory, and to help inflammation. Then there’s an Omega 3 combination pill to help with heart health and inflammation. Finally, there are 2 different herbal drops taken orally which help the body get rid of neurotoxins. A buildup of neurotoxins can cause seizures so the drops are especially important. As for the diet, well, it stinks as most diet plans do I guess. However, it’s been proven that patients who are strict about taking their supplements and following the diet plan along with the antibiotic therapy have much more success at regaining their health and they do it at a faster rate so I’m trying my best. The diet is yeast free, glueten free (free of wheat), and free of refined sugars and corn syrups – which basically leaves me with meat, chicken, eggs, vegetables and a few fruits! The problem comes from my body being so out of whack with all of the diseases that I actually gag and have to force myself to eat those things. I can hardly stand red meat anymore and chicken isn’t great either. I love vegetables and fruit but they don’t fill you up. I was on a yeast free diet for a year before going to Kansas City and I was very strict about it but I was also able to go to Whole Foods and find a lot of the items I could eat and I was cooking the meals. Since I can’t do those things anymore poor M ends up having to do it all. My mom will cook whatever we ask her to but most of the dishes are best served freshly cooked and we don’t want her having to come over every night and cook dinner for us! We’re going to find a way to do all of this the best we can.

I started the Vancomycin this past Monday and did great on it until the end. I ended up turning red from the chest up. I was flushed, looked like I had a sunburn, and my lips and cheeks were numb. It’s a side effect only seen in patients taking Vancomycin and they call it “Red Man Syndrome”. It can be controlled with IV Benadryl, which I had taken at the beginning of treatment and again halfway through. I was worried that this side effect would mean the doctor would take me off of Vancomycin. I told M that 47% of people who use the drug have this side effect and sometimes it only occurs with the first dose. The doctor agreed I could stay on the drug but that I should only do one treatment daily for the first week and then try our plan of twice daily treatments. I didn’t have the reaction again so I will start the twice daily treatments on Monday. The drug has to be given 12 hours apart so that means I’ll be taking it from 6-9 a.m and 6-9 p.m. Those aren’t my ideal times, but we have to do what we have to do. Our motto for the past year has been, “It is what it is.” and it’s true once again.

God has been with me in so many ways over the past few weeks. I know He is always with me, but there are times when His presence is so overwhelming that you simply can’t mistake it for anything else. I want to write more about the things He’s done and the things He is doing in my life but haven’t yet found a way to describe it all. I pray that He will help me find the words to share it all in the coming week. The hard thing about going back on the antibiotics is that the drugs make it difficult for me to think and write very well. I’m hoping that doing twice daily fluids Fridays through Sundays will help me to feel well enough to keep writing. God will allow me to write when He’s ready for me to do so. I just get impatient about sharing what He’s doing but He’s the one who leads me in what to say. Since I can’t find the words yet I think He’s telling me to wait. I can say that some of my symptoms are already going away with just 4 days of antibiotic therapy. That’s good news but as I start twice daily treatments I will likely deal with a lot of side effects from killing off the bacteria. I’ve said before that this treatment is somewhat like chemotherapy in that you feel horrible when you’re on treatment but you go through it to feel better. I even had a woman comment on one of my posts who had been through chemo and she said my treatment sounded a lot like what she went through and she was sweet enough to say she would be praying for me. It’s a weird treatment because while some of my symptoms flare when I’m off the antibiotics others will flare when I’m on antibiotics. Once again, it is what it is.

I want to thank everyone for their support and prayers as I go into my 14th month of treatment. I knew this wouldn’t be a “quick fix” and that it would likely take 2-3 years to “get my life back” but I had no idea how hard it would be. I didn’t mind the time frame but I was ignorant of how that time would be spent and what physical trials awaited me! I want to also say that M and I know that God led us to the proper research materials and gave us the wisdom to come up with a treatment protocol we believe to be best for me. We know without His help none of this would be possible. These aren’t easy times but we feel that God is working in our lives more now than ever before. We know that He has a plan for us and we believe that plan includes my healing. Things are difficult for both of us but we trust in God’s plan for our lives and pray only that His will be done in our lives. That’s the best any of us can do isn’t it? Just to trust God, humble ourselves before Him, and pray that His will always be done in our lives. Again, thank you all for your prayers because we truly think they are what hold us together some days!

Here are a few verses that I’ve seen on my calendar and felt were very fitting for my situation:

“I lift my eyes up to the hills – from where will my help come? My help comes from the Lord, who made heaven and earth.” Psalm 121:1-2 (NRSV)

“He will yet fill your mouth with laughter and your lips with shouts of joy.” Job 8:21 (NIV)

“For he will command his angels concerning you to guard you in all your ways.” Psalm 91:11 (NIV)

Much love-
K

Releasing anger...

2010-07-16T12:47:00.002-05:00

I’ve been angry at God. I’ve had 3 seizures in 3 days and they last a long time and they hurt my body and they make me angry. I hurt and I am so tired and I honestly get angry about that. I wonder when it’s going to stop and I get angry. But I can only stay angry for so long before God starts to work on me. He starts to work in my heart and show me things. This morning He showed me how to stop being angry – at least for now. He started to show me how to hand things over to Him AGAIN – it’s a lesson He has to teach me repeatedly. He showed me a few things and then He told me to type. That’s when He really starts to show me things – when I write. So I just started typing and I ended up with what’s written below:

I’m never going to be in control of my life. Even those people I envy, the ones that have lives that look perfect…they aren’t in control of their lives either. They just haven’t had to be hit on the head with something that makes them face that fact. They haven’t gone where I’ve gone – that place where you give up every concept you had about being in control of your life. I had to realize that I’m not even in control of the next few minutes. As soon as I start to think I am – a seizure could hit. The kind that knock me around and show me I’m not in control of my own body or even my muscles. I’m a puppet when those happen. I just have to decide that in my life I want to be God’s puppet and not a puppet pulled by the wants and desires of the outside world. I see people’s vacation pictures and I wish I could plan a vacation, or just be on a vacation. But my life is where God wants it to be for now. I’ve had a lot of good vacations in the past, but now is not my vacation time. Right now is a time of intense pain and suffering that God has been and will be using to refine me into that person He wants me to become. I don’t know why some people get an “easy life” as compared to others. I don’t know why God allows some people to be refined by walking through fire after fire while some people live easily and simply. Maybe I needed this kind of definite breaking to ever learn how I need to react to how God will work in my life. I don’t surrender easily and I continue to have a hard time even surrendering to God. I know it’s the best way to go through life but I have such a strong desire to control my life, my environment, my world that I have to talk to God daily, to have deep talks with Him just in order to hand over that day to Him. I need breaking. I want to stop being broken though. I’m tired of breaking. I’m tired of going through the process of being broken repeatedly. The sad fact is that I’ve had to be broken repeatedly to even understand one tenth of what God is trying to teach me daily. So I don’t get that “easy life” but if that is God’s plan I should allow myself to find a way to accept it and be okay with it.

I’m never going to understand HOW God works or WHY He does things or allows certain things to happen. That’s not my job. I’m not the one who has to understand the how’s and why’s of all of that. It’s up to God who is much more qualified than me to make those decisions. I may marvel at what transpires in other people’s lives because it seems they never had to fight and claw for what they have. But at the same time I may also marvel at how real God has made Himself to me. How He is surrounding me with His presence even when I doubt His plans for me, even when in all honesty, I don’t deserve to feel His presence. I feel anger welling up inside me when I compare my current situation to those of my friends. I feel anger at Him for putting me in this place, for allowing me to endure such pain, both physical and mental. But you can only stay mad for so long before He makes you pull yourself up. If you try to ignore Him it doesn’t work. At least it doesn’t work for me. I am allowed a few weeks at a time to be upset and angry and then I feel Him pulling at me. He’s tugging at me to step back and see that I’m not the only one in the world who’s hurting and in pain. I’m one of so many people who haven’t been dealt the “easy life”. I have to step back to let that anger go and it feels like a weight lifting off of me when I let it go. Sometimes I get to feel that way for days – to feel light while I go through the pain and heartache of my current path. I love those days when even the seizures can’t knock me down mentally or spiritually. However, I also know I cannot beat myself up when I do get knocked down. It’s part of the process. It’s the fact that I get back up and cling to God when I rise again that matters. It’s knowing that sometimes the devil uses so many small things to burrow inside our brains and change our outlook on our lives. I’m tired of the devil worming his way into my brain. I have to tell God that and push all those bad thoughts and feelings away from me.

I am not perfect nor will I ever be perfect. That’s okay because neither will anyone else. If I sit back and try to compare my life with those who seemingly got dealt “easy lives” I have to realize that they aren’t perfect either. I also have to realize that I don’t really know what goes on in their lives. I don’t know what burrows into their brains and makes them sad or angry at times. God keeps telling me to “let it go”. I have to let go of the envy I have of those people who seem outwardly perfect because they aren’t. Even if I know for sure that their current situation is better than mine, it doesn’t mean their lives are any more important than mine. It doesn’t mean that they don’t fight their own battles with control issues and giving things over to God. Just because I’m going through such a rough time right now that doesn’t give me the right to feel like I corner the market on hardships. We all have our own versions of rough times. No one goes through this life untouched by pain or heartache and God doesn’t place more importance on one person’s pain than He does someone else’s. He feels all our pain and He tries to see us through those times if we allow Him in to do so.

So, I’ve been mad about my situation. I’ve told God I was mad at Him for allowing my situation to continue on this seemingly endless path of pain and physical hardships with no real end in sight. He let me be mad for awhile and then He came and made it clear that I only get to feel sorry for myself for so long before I have to step back and hand all of that over to Him. He doesn’t want just part of it – He wants ALL of it. I have to hand over the envy, the pain, the heartache, the disappointment, the control issues, the anger, and the frustration of it all. I have to give all of those to Him because if I don’t, they will eat me alive. I’m so thankful that He tells me these things. I’m so thankful that He makes His presence so palpable, so amazingly real, in my life. I’m so thankful that He blessed me with a wonderful husband who prays daily for us to be able to accept whatever God’s will is for our lives. I’m so thankful that God gave me a husband who does nothing but support me through all of this. I’m so thankful that God allowed me to have a family that goes through all of this with me and prays for me all the time. This is what Paul meant about prayer. To pray with THANKSGIVING and I’m thanking God for all the wonderful things He has already done in my life instead of allowing myself to wallow in how bad my current situation is. God goes before me in all things and I know this because He has shown me how very true that statement is so many times in my own life. So I may not know where my life is headed. I may not know what other physical trials I must endure. I may not know how to handle what comes next or how to accept my total lack of control of everything. But I know that God goes before me. If I can just focus on that then perhaps I could stop comparing my life to other people’s lives. He goes before me so no matter how bad things get, He is ahead of me clearing out the path of my life.

So, that's what I typed while I listened to God. That's what I think He wanted me to see today. I wish I saw things this clearly everyday but I can't. That's not how it works. I have to just hand it over and see what happens next. We're making some changes in my treatment because my symptoms have gotten a lot worse since I stopped treatment and we feel that changes must be made. Pray that we make the right decisions and that God leads us clearly to the best decision for my health right now.

It's only fitting that I end with the verses that hit me so hard as I typed this:

"Rejoice in the Lords always, I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgivng, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:4-7

Thank you to all the people who still read this and who have traveled this road with me for over a year. I've found that many people are with you in the beginning, but as time passes people want to hear good news! They want to see God working fast! They get tired of hearing about set backs and hurdles. So, I am grateful to everyone who has prayed me through those set backs and hurdles and who, like me, wants to see God's healing power fast, but understands that God works in His own time and not ours. I am truly blessed to have so many good people praying for me and I know how important all your prayers are. They are precious to me.

Much love-
K

Trying to adapt and feeling numb...

2010-07-10T13:56:00.008-05:00

I went to the speech therapist and they did a barium swallow test. I had to eat applesauce, a chip, small fruit pieces and drink water while we watched it live on a monitor. All of these were coated in barium and they cleared my throat. They said I should go to an ENT and possibly a gastroenterologist next. Those specialists would be able to see if the problem is further down my esophagus into my chest. Their theory is that those are the muscles causing the problem. It seems they spasm too much for no reason and then they don’t spasm properly to push my food and pills down. My theory is that the swallowing issue is a herx reaction and will go away now that I’m off the anti-yeast probiotic supplement. Also, detoxing from the IV antibiotics is extremely hard on your body and that could have added to the problem. The good news is that I think it’s getting better day by day. I’m still eating jello or ice cream to make sure and push the pills down but at least I’m getting them down!

I also started a stimulant medication that is supposed to help my brain fire the right messages or at least get it to recognize signals better. The down side is that the medication can increase the chance of seizures before my body gets accustomed to the drug. I had a seizure the first day I took it and that upset me because it was a “bigger” seizure than I have had in the past month and it lasted for awhile. I cannot say that it was solely due to the drug though. I had been at the hospital the day before to see the speech therapist and had to be wheeled all over the hospital in order to get to radiology for the barium test. Side note – picture me in a hospital wheelchair with an oxygen tank attached wearing sunglasses and a hat to deal with the fluorescent lighting and then headphones over my hat to keep the noise out. I choose to think people stared because I looked good instead of just weird – haha. Also, underneath the headphones I had in my ear plugs which are the kind used at shooting ranges. They are the best around and yet even with all of that everything was still so loud. That should better explain just how sensitive my hearing is right now. I could still hear everyone talking around me, doors shutting, and even the beeps in the elevators! Because my severe sound sensitivity can cause me to have a seizure, I have only been out of the house 4 times since I’ve been home – that’s almost 3 months now. So I’ve not been around many things that stimulate your central nervous system. Then the next day my nurse came to the house for my weekly blood draw and PICC line dressing change. We also had a UPS guy who was apparently illiterate since he rang our doorbell even though there’s a big sign on the door saying to NOT ring the doorbell. Unexpected loud noises trigger my “startle reflex”. If I’m standing I will fall straight to the ground and I can also go straight into a seizure ergo the need for the sign. It was that afternoon that I had the seizure so I think it was just 2 days of being over stimulated as well as the new medication that caused it.

As you can imagine I hate the fact that I am basically trapped in my house. I want to go out so badly but we haven’t tried it because of the high risk of having a seizure. The seizure itself might not be so bad but I could really hurt myself when I fall to the ground when one hits. So, I think God did show me something during my trip to the hospital. It was the first time I’ve tried to maneuver a wheelchair on my own and cover a lot of ground. Usually my husband or my mom just pushes me but I’m really tired of being so dependent on other people so I wheeled myself around. There were several unexpected loud noises while I was there but when my body went limp it didn’t matter because I was in a wheelchair with arm rests and leg supports. It made it safe for me to deal with my sudden loss of muscle control. My mom was with me and we started thinking about how a wheelchair might be the answer to getting me out of the house safely. I immediately started searching for wheelchairs online but all of the ones with leg supports are over 40 pounds. I’m not sure if mom could get that out of the car trunk even if I was able to help her lift it. So, now I’m trying to ask around to see if anyone can tell me where I can find a lighter weight wheelchair with leg supports.

M works from home which is such a blessing but his office is downstairs so most days I end up in the bed alone. All of this alone time means I often think or dwell on situations too much. I couldn’t help but recognize how bad things have to be when you get excited over the possibility of getting a wheelchair. Also, I think about the fact that if and when I do get out, I won’t be able to “fix up” like I used to do. It won’t be that I’m merely going out without my makeup with hair that’s too long and needs washing. No, I’ll be sporting my anti-seizure look with the sunglasses and headphones like I was at the hospital. I’ve lived in the same city my entire life, except when I was away at college, which means that I rarely go anywhere without seeing someone I know. I picture running into someone who doesn’t know my situation and seeing them either look uncomfortable about what to say or worse to have them look at me with pity in their eyes. I’m not sure I could handle that. Maybe that’s my vanity talking but it’s been hard on me to realize that I may have to endure that in order to escape my bedroom and get out into the world. However, I’m beginning to see it as a small price to pay in order to have some sort of life outside of my house.

I know I’ve written a lot but I’ve always said people don’t have to read this if they don’t want to – ha! So, I want to be brutally honest about how I’m feeling right now. I’m depressed and I recognize that’s a completely normal emotion for my current situation, not to mention the impact of all the “downer” medication I have to take for my seizures. But when people tell me how strong I am or how they are amazed by my faith, I sometimes feel like a fraud. I go through times where I don’t feel strong at all and I am holding on to my faith not by a rope, but by a single thread. There are times when I question God about why I have to go through this. I tell Him that I’m crying out to Him and yet sometimes feel as though He must not hear me. I want Him to heal me faster if it’s His plan to heal me at all. I get mad about what I’m going through and I know that doesn’t mean I don’t have faith. I know God’s with me through all of this but I’m human and I’d rather He fix my problems instead of Him having to carry me through them. As always I try to think about all the people who have it much worse than I do but sometimes it’s hard to see beyond your own pain. I feel guilty about the fact that I haven’t even been able to make myself read my Bible or watch any online sermons. What might be worse is that I’m noticing that my anger about my situation is fading and I think I’m somewhat numb right now. I do credit myself with the fact that I’m getting better at just adapting to changes in my life now. I try to simply adapt to any new or worsening symptoms. I’m adapting to being in the bed all the time and not seeing people. I’m adapting to the fact that I have no idea when I’ll be able to handle the noise of the outside world without plugging my ears up. I’m adapting to never knowing when I’ll be able to drive my car. I just try to keep adapting to whatever happens next. If I can’t make myself adapt and accept these things the only other option is crying all the time. I’ve done that before and it solves nothing. Sometimes it can even trigger a seizure. I can’t have pity parties anymore so I’m numb. I read something written by a person who was going through a horrible situation health wise and it wasn’t just her life that was at stake because she was pregnant and her baby’s life was at stake as well. I can’t imagine being in that situation but reading what she wrote after spending most of her pregnancy being hospitalized helped me. She wrote about becoming numb to what was happening and she looked at that lack of emotion as a gift from God. I cried when I read about how she thought God was allowing her to be numb because otherwise she would be going crazy. Her thought was just because she couldn’t bring herself to pray that didn’t mean God couldn’t hear her soul crying out. I think she’s right. God knows what I’m going through and He knows everything I’m feeling. He’s still here with me and He knows how very human and imperfect I am. In writing this I just became aware of something. I think He’s beginning to show me what being saved by grace really means. He looks down on us with an unconditional love that we cannot comprehend. Even though I’m not feeling spiritually strong right now, He still loves me. His love and strength are the very things that have gotten me this far in my very difficult journey. The Bible says that God is love and that it is by accepting Jesus Christ that we are saved. None of us could ever do enough good works or be perfect enough to earn salvation. It is by the grace of God and His love for us that we are saved. So right now I may be feeling numb but that doesn’t mean God is not at work in my life, nor does it mean that He has forgotten me. His presence in my heart is the only thing that is pushing me through each day right now. I know the numbness I feel is not permanent. I believe God is showing me that just as my current mental state is not permanent; my current physical state is not permanent either. I just have to hand every bit of this over to God every day and realize that my soul is constantly praying to Him, seeking Him, and trusting in Him. Even when I’m numb, I can still count on Him.

“ ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’ ” Jeremiah 29:11

Much love to you all –
K

Holding on to hope...

2010-07-02T10:10:00.002-05:00

I went back to the doctor on Monday (the 28th) after a very rough week. I had a seizure on Wednesday afternoon but it wasn’t the same as my other seizures. It wasn’t as long (thankfully) and at the end it was like my body just went limp and I had to sleep. My blood pressure went from being in the 150s/80s right back to its’ usual 80/60 and my pulse dropped from around 160 to 55 very fast. I immediately slept for hours but M kept a close eye on me of course.

Seizures aren’t the only set back though, I’m also having difficulty swallowing. I’ve always had some issues swallowing food and even had a test run 5 years ago where I had to swallow a barium tablet while being x-rayed so they could see if there was an obstruction causing the problem. Nothing was there but it showed where the tablet stayed in one part of my esophagus for 10 seconds or so and another area it hung out around 15 to 20 seconds. Doesn’t sound like a long time but it feels like forever. However, the powers at be at that time prescribed me an acid reflux drug and called it done. Just another reason why I don’t tend to trust doctors very much – they’ve missed or misdiagnosed so many of my illnesses in the past! My current swallowing issues are much more serious though. Serious enough that I haven’t been able to swallow pills and when I do they seem to dissolve in my esophagus and give me horrid heartburn. It got to where all I could swallow besides water was ice cream and jello. It actually feels like my throat is closed or that the sides are touching each other. It’s scary and somehow just another expected unusual issue that I seem to keep coming up against. The fear that the choking feeling creates is another problem. I had three “mini-seizures” Sunday afternoon because I felt I was choking. The choking upsets me, my emotions trigger brain activity that somehow ends with seizures. We’re trying to keep me drugged so that doesn’t happen but even so it’s been a rough week.

The doctor believes the swallowing issue could be one of two possibilities. First, it could be a herx reaction from the anti-yeast medication I’ve been on which would make sense because this flared up so quickly. The other reason has to do with my autonomic nervous system malfunctioning and it is haywire right now. To put it very simply, the autonomic nervous system controls all sorts of things from your heart rate, blood pressure, body temperature, etc. Mine has been out of control for years. The doctor thinks at the worst that my autonomic nervous system has been a little “fried” and for now my brain has forgotten how to swallow properly. We have an appointment set up with a speech therapist next week who will work on retraining my brain and esophageal muscles to swallow correctly again. We could have gone this week but we’re praying that this is simply a herx and that since I quit taking the anti-yeast medication on Saturday that we will see a marked improvement in the next few days. If not, I can get in to see the speech therapist this week. The only reason we don’t want to go is because it is almost impossible to get me out, to the hospital, in the 90-100 degree heat, with all the noise and not expect me to either have a seizure or just pass out. We ended my doctor’s appointment with me having crawled out of the wheelchair and onto the cold tile floor. I was clammy and felt faint from all the exertion. So, it isn’t that we don’t want to jump on getting this taken care of, it’s just that sometimes getting me out of the house can be more of a danger than trying to wait this out.

I have also stopped the IV antibiotics for 2 months. We are praying to see a big difference in how I feel since you normally feel worse when you are on treatment than when you are on. I will still be doing a bag of IV fluids every day as well as taking my blood thinner and Benadryl through my PICC line. This will make sure and keep the line open in case we have to go back to IVs after the break. We’re praying that if I do need more antibiotic therapy I will be able to handle orals now instead of having to keep my PICC line in. I can’t begin to tell you how I would love to be able to take a shower or bath without having to keep my arm wrapped and my line protected from the water! Pray that I see strength return to my body and my mind. Pray that I feel God leading me to an end of these IVs and toward a healthier life. Also, please continue to pray for all my treatment friends. I keep up with them and there are a few still at the clinic, some have gone to another clinic for different therapy options, some are home on oral antibiotics – but they ALL need your prayers. Prayers for hope and healing and prayers for God’s love to be with them as they continue down their own paths trying to find their way back to health!

Now, I have been in this bed and cried out to God about all of my troubles and especially this swallowing issue. He knows my pain, suffering, and sorrow. I know there are many other people out there in much worse situations than I. I try to focus on that when I sit here and think about how my “life” is really no life at all. The doctor says there could be a scientific reason I feel that way – again having to do with my nervous system issues, etc. Right now the experiences that make up “life” – for instance, smelling flowers in bloom, feeling sun on your skin, talking to family and friends – are not available to me in a many ways. My senses have gone haywire – sound and light sensitivity, not being able to be around more than 1 or 2 people at a time, my daily fevers due to my inability to regulate my body temperature – ALL of these things are keeping me from experiencing life as a “normal person”. Therefore, the hormones that control how I feel about my situation seem to be haywire too. Some days I feel thankful to know the improvements I’ve made from this time last year. But, there are the days when I wonder if I haven’t just traded symptoms basically. For example my heart rate doesn’t go into the 180s when I walk anymore, but I now I have seizures when I didn’t have them before. It’s hard to try and stay positive. That’s the hardest part about all of this. It’s the part that I battle the most – the battle to NOT fall into some depression over things I can’t do or can’t have.

God is working on teaching me how to hold onto hope – not hope in my doctors – but hope in HIM. He’s telling me to hold onto hope in HIS plan for my life, and TRUST in that hope that He is sovereign over my life. He may not have laid an easy path before me but He has never once left me on that path alone. So, I cried out to Him and He answered by sending me to watch another online sermon about Job. Job, a man who despite having everything stripped from him never once kept from hoping in his God. Job was helpless in his own situation and he gave it all over to God. He praised God and even when he cursed the day he was born, he NEVER cursed God for his problems. Don’t worry, I know I’m not the “perfect servant” Job was, but I know God forgives me for my shortcomings though!

I know there is some reason (which I may never know on this earth) why I’m going through this. I don’t even know exactly why God wanted me to start this website or to feel like my story was worth sharing – but I don’t have to know these things. God knows. God’s plans are intricately woven throughout history and sometimes when you step back and look at the “big picture” of what God’s plans are you realize that your pain, hardships, sufferings, etc. are simply just tiny parts in a much larger plan. I pray to keep my hope. I pray for God to fill me with strength of course, but I know that hope in Him is what will get me through to the end of this. I have fought too long and too hard to just lie in this bed and whine. I will see all of this through because I have to and God’s promised that I will not see it through alone. He will carry me through the days that I cannot handle. How do I know that? Because God’s hope lives in my heart and I am blessed to feel God filling me with hope as I type these words. I have been mad and I have cried and I have come to the understanding that I have to continue to hold onto the hope God gives me. I cannot give up hoping and I must remember to keep my hope fresh every day even when I feel like I’m being dragged down. God is my reason for hope.

Here are some of the verses that have touched me and seem to fit with all of this:

“O sing to the Lord a new song; sing to the Lord all the earth.” Psalm 96:1 (NRSV)

“Your steadfast love is as high as the heavens, your faithfulness extends to the clouds.” Psalm 57:10 (NRSV)

“Though the fig tree does not bud and there are no graps on the vines…I will rejoice in the Lord, I will be joyful in God my Savior.” Habakkuk 3:17-18 (NIV)

Wishing you all a happy 4th of July weekend and much love!
K

Progress in Suffering

2010-06-17T11:52:00.003-05:00

Yesterday (June 16th) marked my 1 year anniversary of IV treatments. I started IVs in the clinic in Kansas City 1 year ago and I have continued my daily IV treatments here at home. An entire year of pushing IV drugs straight into my heart basically. It’s probably safe to say it’s been the hardest year of my life to date. I have struggled so much – kidney stones, horrible stomach aches, joint pain, working to keep my weight up, having so many seizures, excrutiating migraine headaches, and emergency surgery where I not only lost half of my blood but my right ovary as well. Those are just the things I can name off the top of my head. All in all, the past year has been an exercise in suffering but it has been full of blessings as well. I cannot explain how blessed I feel to have made the friends that I did during treatment at the clinic. My “war buddies” are people that will always be close to my heart and I have continued to keep in touch with them after coming home because sometimes they are the only ones who can understand. It was a blessing to finally be diagnosed and to have the right lab tests done that explained what was happening to my body. After quitting work at age 30, after spending the better part of 4 years in bed, after seeing countless specialists who couldn’t help me, I finally got some answers and more importantly, some help. Now I’m 35 years old and although I’m so frustrated with how slow the progress is, I have to realize that I’m lucky to be alive even though I’m really not living a “life” as most people would define it. I’m going to take a 6 week to 2 month break from the IV antibiotics around the first of July. I will probably still do a least 1 liter bag of fluids every day or two in order to keep me hydrated but also to keep my PICC line open and to be able to administer my blood thinner, Heparin, without having to give myself 4-5 shots a day. During that break we’re going to be working on my stomach, intestines, and immune system. We’re going to try to see where I am, physically speaking, being off treatment. We hope to see a lot of improvement off of the IV antibiotics, but we may still have to go back to them after the break. That’s our plan of action for now. We’ve realized we can’t really plan our lives or even my treatment. It’s all in God’s hands and sometimes that is so comforting and other times it is very frustrating.

I never write an entry on here before I feel God leading me to do so. That said, I haven’t written in weeks because of that frustrating feeling of being unable to control any of this. Plus, I was busy feeling sorry for myself. Every day I wake up it is a struggle to have a positive attitude. I think that’s a struggle for everyone. How do you wake up and not immediately think of all the things you HAVE to do that day or think about things you HATE to do? Some days I think we wake up hating the alarm clocks that woke us up in the first place. So, I struggle and wrestle with my emotions and try to fight my mind from thinking “dark thoughts” every single day. I hate to admit that I fail at least 5 days out of the week. God seems to be far away from me on those days. I feel let down when I don’t automatically feel Him with me. On those days I must choose to seek Him, but I fail at doing that a lot too. The past 3 to 4 weeks I think I not only choose NOT to seek Him, but I tried to hide from Him as well. That may sound strange but I was so depressed and discouraged that I didn’t even want the encouragement that God gives me when I read the Bible or an inspirational book. Not to worry though, God forced me to get out of that mindset and seek Him. He kept subtly pushing me until finally I thought, “OKAY God, I will watch a sermon online but that’s all I’m doing!” as if I were doing Him a favor! I hope He just laughs a lot at me during those times when I think I’m in control or when I think I know what’s best for me.

So, I watched a couple of sermons and they both hit me over the head so many times! I often say God hits me on the head with a “stupid stick” meaning He will make something so clear to me that I have to be stupid to ignore Him or His will. That’s what He did with these sermons. One was about God and His promises. The pastor spoke about how even though we humans fail over and over again, God does not. He never fails and He always comes through on His promises. The pastor mentioned how God promised Abraham a son even though his wife was barren. But it didn’t happen right then. In fact, Abraham and Sarah began to doubt that God would ever come through on that promise. I think the pastor said it was about 15 to 20 years later that God finally blessed Abraham and Sarah with Isaac. That made me realize that I have been trying to force God to make me feel better faster and how I get frustrated when things are not happening in the timeline I envisioned. Just because I feel like it’s taking too long for God to heal me does not mean that God doesn’t plan on healing me at all.

The next sermon was about Job. We all know Job was a good and faithful servant. God even told Satan about his good and faithful servant, Job. Satan said Job was faithful because God had blessed him with so much - many animals, many servants, and a large family. Satan implied that it was easy for Job to be faithful basically because Job had never endured any hardships. God then allowed Satan to attack Job. Job loses his family, his servants and his animals, and yet Job still worships God. Of course Job went through unimaginable pain and was hurt deeply but he trusted that God was in control and he praised God. So then Satan attacked Job physically covering him head to toe with painful sores believing this would cause Job to turn his back on God. Satan was wrong again. In the end, Job lost everything but came out of these trials still faithful to God and God again blessed his life with many things. This sermon hit me because I understand suffering physically without understanding WHY I have to suffer. The pastor explained that Job was faithful even though he had no knowledge of WHY God was allowing him to suffer. Job had no idea that God had told Satan about Job’s faithfulness. Job didn’t know God was using him as an example of what a good and faithful servant would do given such dire circumstances. That would have changed everything. So even though Job knew nothing about the WHYS of his suffering, he still remained faithful to God. As the pastor put it – Job was hopeful during his suffering, Job was humbled during his suffering and eventually Job was healed from his suffering. I had to think on that for awhile.

I’m not a “good & faithful servant” all the time like Job was but it made me see how I should be handling this suffering. I know God stripped me of many things to humble me because I needed to be humbled. However, I need to remain hopeful in the midst of all of my suffering. I need to allow God to work in His timeline instead of trying in vain to force things to happen in my timeline. I need to trust in God every day and cling to Him instead of running away when it all seems so terribly overwhelming. So I’m working on that. Maybe I will see some major differences when I take a break from the IVs but I cannot allow myself to lose hope if that doesn’t happen. I simply have to trust that God knows best and He will be with me during all of these trials.

I know I have probably shared these verses before, but I had to share them again because of the timing of when I read them. Once again, God uses my daily calendar to lift my spirits.

The verse for yesterday, the 1 year anniversary of my IV treatments, was this:

“We also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us.” Romans 5:3-5 (NRSV)

Then the verse for today – the day I begin another year of fighting these diseases – is this:

“But for you who revere my name the sun of righteousness shall rise, with healing in its wings.” Malachi 4:2 (NRSV)

Verses written about what good comes out of suffering and promises of healing. God is with me as I write this. Tomorrow I may feel down again, but for today God’s given me the strength to keep pressing forward, following the path He has set for my life.

Hard to believe this picture was taken almost 1 year ago. She was definitely one of the brightest parts of my treatments!

Much love to you all-
K

Anger, Envy and Fear

2010-05-24T11:05:00.003-05:00

Those are some hard feelings to have – anger, envy and fear. As Christians we are supposed to strive to push these thoughts and feelings from our hearts and minds. That’s such a difficult task isn’t it? It is much easier to point to others and see these things in other people. It hurts too much to see these feelings manifested in our own day to day lives. However, I believe that is one of the reasons it has taken me so long to tackle this entry. I believe God wanted me meditating on these thoughts deeply before I wrote something that might otherwise come out as merely hollow words. I believe God wants me to share my recent experiences and emotions openly and honestly and He wants me to do so in order for His lessons for me to hit home. I may write things that touch other people, but God really uses my writing to make me aware of what He wants me to learn. He always seems to reach me and teach me when I write.

Anger is something we must give over to God. It is such an ugly emotion and it will easily consume you, your thoughts and your life if you allow it. I’ve been angry about a lot of things. First thing is one that is easy to point to – a medical mix-up. Doctors, nurses, etc. are only human and therefore mistakes happen all the time. Unfortunately, this mistake was that he Heparin (my blood thinner medication) sent to me with my home health care supplies was only about 1/1,000th of the amount that I should have been getting. Another bad thing is that I was the one who had to catch the error. In my doctor’s and nurse’s defense my case is extremely difficult and I am on so many medications (IVs and orals) that it would have been a miracle had something not fallen through the cracks. I wish I had checked earlier but I ended up going for almost a month without any therapeutic levels of Heparin. I was having trouble thinking, was exhausted, felt faint, had a few seizures, couldn’t get on the computer, etc. Basically I was feeling close to how I felt before I even went to Kansas City. I knew I was feeling worse but did not know why and figured it was just the stress of handling all of the changes in handling my own IV care. When God led me to really look at the amount of Heparin I was getting versus the amount I had been getting, well, I was REALLY angry. I had basically been pushing IV antibiotics into my heart while my blood was getting thicker from the lack of Heparin. This was a big “ball to drop” and I was so very angry about it. It took days for me to calm down and I still have to ask God to take the anger from me daily. I wondered how I was supposed to keep an eye on every single thing when I’m the sick person and when I’m on so many drugs that alter the brain. I have been on the therapeutic levels of Heparin now for 4 days and can see a huge improvement in my symptoms and I thank God for making me double check the dosage amounts. But I’m also angry about the situation I am in because I have no idea of how long this will take or even what my own version of “healthy” will be. I am angry about how much I endure and how it seems to be never ending. I stop myself often and think about the countless others who have it so much worse than me and I wonder how on earth they handle their continuing battles. Friedrich Nietzsche wrote, “It is not so much the suffering as the senselessness of it that is unendurable.” That says a bit about how I feel, although I know deep down that the suffering I’m enduring is the fire that God is using to melt me into the person He plans for me to become. But, at times I do think the suffering would be durable if I knew when it would come to an end. God doesn’t give me a time table though.

Anger has been with me but so has envy. I’ve found myself so very envious of other people’s lives. Ah, yes, the old familiar pity party. Honestly though, I had to get off of facebook because I was so jealous reading about everyone else’s lives. Even the things they would post and/or complain about like having to be at the ballpark for 6 hours on a Saturday because they have 2 kids playing ball would make me mad. Reading complaints about having to go to the grocery store or having to clean house would cause me to get upset. I wasn’t upset because these people didn’t have the right to “complain” about their busy schedules or their chores or errands. I was upset because I would think, “I would give anything to have the strength to clean my house right now!” and of course that nagging feeling of, “I wish I had children and had to spend a Saturday at the ballpark watching them and feeling proud.” Envy does not suit me. It is an emotion I am supposed to push out of my mind yet I found it resurfacing time and time again. I know that being a mother is the most exhausting job in the world. I know that working mothers have it really hard because I cannot fathom having the energy to work or have children so I really cannot imagine how so many of my friends do both! I love the fact that my friends are busy with their families and their lives, but the envy I was feeling made being stuck in this bed that much harder. God has been working in me and convincing me to give up those feelings along with the anger. Envy and anger go hand in hand. When you’re envious you end up being angry about everything you don’t have that others do have. I was envying other people’s lives and questioning why I was stuck in this one. I know everyone has their own burdens but I was in a selfish mode and wondered why it seemed some things came so easily for others while I couldn’t even start a family. I was angry about the IV pole sitting by my bed and the oxygen mask around my face. I was getting impatient with all of this and I was angry with God about it. I told Him how I felt and He started to work on me then wrenching away all those unwanted emotions from my mind. He’s still working and I’m still praying that those negative feelings of anger and envy find no place to live in me.

Finally there’s the fear that goes with all of this. Fear is honestly the root cause of most all other emotions. Anger is just simply fear with an attitude. It’s a way to cover up the weakness you feel when fear resides in your mind. No one wants to feel weak and people tend to see fear as a weakness so they turn it into anger. Envy is simply the fear that you don’t measure up, or that you are scared you’ll never get the true desires of your heart – in my case that would be being healthy and having children. Fear is always at the heart of anger and envy. So, in order to get rid of those two you have to figure out what your real fear is and face it head on. My fears seem to range from something as simple as fear of having another seizure to bigger fears like will I ever have a healthy life and if so, WHEN? Fear is like a cancerous tumor that can grow so fast if you don’t actively remove it from your mind and heart. Fear is the devil’s most used tool I believe. How much does he love to make us question, doubt and become fearful? Those fears often lead to our doubting God, or at least that’s where they lead me. I get angry and I start to doubt that God is going to do great things in my life or I doubt God’s will for my life. I sometimes just wonder what God’s plan for life is and get worried that it’s far from the life I had pictured for myself.

I’m working on all of these things and I pray that God continues to shine a light on what I should be focusing and turns my mind to those things when my mind really wants to throw a pity party. Jurgen Moltmann wrote, “God weeps with us so that we may one day laugh with Him.” I know God counts my every tear and disappointment. He knows what I’m feeling and thinking long before I myself am consciously aware of those things. He is not taking me through this journey without a reason. He is working on me and I have to force myself everyday to become more like clay in His hands than a stone that refuses to bend.

Finally, I think a lot of these unwanted negative feelings have come from being home and missing out of being able to socialize at all. In Kansas City I did have my sweet treatment friends and my sweet nurses who were my social outlet. For now I am stuck in this house and due to the seizures I can’t have visitors. So there’s that solitude again. I know God’s plan for my life is far better than the one I had planned out for myself – it’s just a different journey with an emphasis on different things. Mine is not the “normal life” I wanted. For now it is the difficult life I currently live. But I know one day I will look back on this time and see it as what ultimately defined my life. I have no assurances that I will have an easy life on this earth. God does not promise us an easy life here but He does promise to be with us every step of the way. L. B. Cowman wrote, “Do not be afraid to enter the cloud that is settling down on your life. God is in it. The other side is radiant with His glory.” Again, no fear…with God I need not fear anything because He is always with me.

“The joy of the Lord is your strength.” Nehemiah 8:10 (KJV)

I thought I would share the following because it spoke so much to me when I read it in one of my devotional books:

“Trust Him when dark doubts assail thee
Trust Him when they strength is so small,
Trust Him when to simply trust Him
Seems the hardest thing of all.

Trust Him, He is ever faithful;
Trust Him, for His will is best;
Trust Him, for the heart of Jesus,
Is the only place of rest.”

Finally, I’ll end with this wonderful verse:

“And the Lord God will wipe away tears from all faces.” Isaiah 25:8 (KJV)

He’s already wiping some of mine. Much love to all of you!
K

Just a medical update

2010-05-18T14:31:00.003-05:00

God's been working in my brain to write a new blog entry but it just isn't ready yet. I'm still listening to Him for whatever message He wants me to convey. However, for those who have been wondering how I've been doing I thought I'd just give a medical update. I have also taken a "computer break" from facebook, the blog, etc. hoping it would help keep the seizures at bay. So, I know I have quite a few friends and family who are wondering how I've been. So, here's an update for you.

First, the IV treatments at home are better as far as having more control over my environment so it's quieter. However, they are still IV treatments and therefore, they are still so hard on me physically and mentally. I'm still running fever everyday starting out with a temperature of around 97 when I first wake up and after 2 hours of cold fluid being pumped through my veins it still goes up to 99 degrees by 11:00 a.m. It continues to go up even during my afternoon treatments. I'm usually about 101 degrees by 6:00 or 7:00 p.m. and it's not going below 100 degrees until after 11:00 p.m. or so.

The fevers make my sound sensitivity much worse and so I have had a few seizures since I've been home. The last was yesterday when a guy from the company who handles my oxygen machine came by. Right now I'm having to use a machine that basically takes the surrounding air in and somehow makes that air more oxygen concentrated. It's a help, but it doesn't hold a candle to the liquid oxygen machine I had in Kansas City. We have a prescription for liquid oxygen but my oxygen levels haven't been able to be monitored during a seizure. I have levels showing I go into the low 90s during sleep when my brain tells me to quit breathing, but no one seems to understand that the seizures I have are due to a lack of oxygen to my brain. The company is trying their best to get the liquid oxygen machine to me, but the FDA regulates those like they were some type of weapon! Anyway, they guy was there to deliver a monitor that would record my oxygen levels while I sleep. We explained the situation and he was intrested to know that we weren't trying to get liquid oxygen for my sleep, but for seizures. He said he would look into everything and try to see what he could do to help.

Bad thing was that when he arrived M & I were not expecting anyone and the doorbell rang at 3:30 (during my afternoon treatment which is my worst time of day). Of course my little toy poodle had to sound off his barking alarm and it was hard for me to handle. After the initial shock I thought I could still talk to the guy to explain all of the issues. As I was telling him how it was impossible for me to predict when a seizure was coming and that even if I could there was no way I could keep a pulse oxymeter on during a seizure since they are little gadgets that go on your fingertip and measure oxygen levels. When you are having a grand mal seizure it's impossible to keep something on your fingertip.

What happened next is what my husband thinks may have been "a God thing" because while the guy was telling us that he would do all he could to help us get the liquid oxygen, I ended up looking at M and stuttering, "Aaattttivan" because I knew I was about to seize. I fell off the couch and M came running with the Ativan that melts in my mouth. All of this, the whole grand mal seizure, took place right in front of this poor guy from the oxygen company. M figures maybe God allowed me to seize right then because when someone sees it happen they are much more likely to advocate me getting the liquid oxygen. We'll see what happens. For now I am wearing a figertip pulse oxymeter (taped to my finger) while I sleep for 2 nights to see what happens with my oxygen. The two night study requires me to sleep without the concentrated oxygen machine which means little to no sleep for me. That isn't good since I have a doctor's appointment tomorrow at 12:30 and don't want to have a seizure from going out in public and lack of sleep can definitely increase the chance of me seizing. M and I decided I would skip treatment this afternoon and that tomorrow morning just do a bag of fluids with no antibiotics to try and help me handle the whole ordeal of going to the doctor's office.

All in all I am very glad to be home but it does hurt my heart not to be able to see anyone. I just cannot risk the chance of seizing. Today my body is killing me from all the jerking, falling on the floor, hitting my hand on the hardwood floors, etc. Please pray that we will somehow get that liquid oxygen machine soon because I need it desperately. There is such a huge difference in how I feel on liquid oxygen compared to this machine. Also pray that I do not end up having a seizure from all the stress of getting to and seeing the doctor tomorrow. I know God never gives me more than I can handle and I've been able to handle all of this with His help. I know God will always go before me and make a way for me to follow the path He guides me down. But, I also know that God wants us to pray for one another and that He hears all of our prayers. So, I ask that you pray about my situation. I ask that you pray for M too as he has been through so much already and needs to be able to work from home without having to come upstairs and check on me (or call me on my cell phone from downstairs to check - haha). We do need prayers. We are out of K.C. and that is an answer to prayer, but we are far from being "out of the woods" so to speak.

I appreciate and love each and every one of you who take the time to read this and who are always praying for me as I continue down this difficult road to wellness.

Oh - again my daily calendar seems to give me passages that fit for each day! When we were praying about what to do about getting the liquid oxygen last week I read that day's verse:

"O Lord, there is no difference for you between helping the mighty and the weak. Help us, O Lord our God, for we rely on you." 2 Chronicles 14:11 (NRSV)

Then yesterday when I had the seizure the verse was:

"He knows the ways that I take; when he has tested me, I shall come out like gold." Job 23:10 (NRSV) - I find the book of Job, the whole story of Job, to be quite comforting as I go through all of this.

And tomorrow's verse as I try my best to handle making it to the doctor's office is:

"Without God it is utterly impossible. But with God everything is possible." Mark 10:27 (TLB)

Much love -
K

Solitude and Serenity

2010-05-07T12:23:00.003-05:00

In my last post I groaned and complained a lot. I guess I wanted to come home and see that being away from the stress of the clinic, being in my own house, would allow me to stop seizing. I wanted to be able to see people and visit with friends and family. But the truth is that I simply cannot do that. It's hard to explain this to people and for them to understand. If I wasn't living it I wouldn't understand it either.

I was complaining a lot about feeling so isolated and alone. I still miss my treatment friends and my nurses. That was where I could socialize a little at least. However, I can't do it here. The stress of treatments and the treatments themselves make everything difficult. I get frustrated with things and my brain gets overwhelmed so easily. Tuesday was extremely stressful as the nurse came to attend to my PICC line dressing and to draw my blood. For some reason my body goes through a lot of stress on blood draw days. Also, this was a different nurse so I was worried about meeting another new person. By that night I had a meltdown and was about to go into a seizure. M got me an Ativan to melt in my mouth and the tremors subsided. But it made me feel so very alone. The idea that I cannot handle the stress of seemingly easy things upsets me. Then yesterday I got excited about a delivery - it was a ring that my parents and my sister and her family got me for my birthday. I got it while I was in Kansas City, but it was the wrong size so I had to send it back and wait on the new size to come. I was so happy to get it yesterday. Then there were a couple of deliveries pertaining to M's business and my little poodle had to bark to let us know someone was coming to the door. When I don't expect his bark it really startles me. By the time treatment started my temp was 100.8 and I was a wreck. Then M knocked over a picture frame and the noise of it hitting the hardwoods was like the straw on the camel's back. Again, with the help of Ativan I only had a "partial seizure". I told M through my tears that this was "no life" - it's living in total isolation while wanting so badly to see people. Just being happy and excited makes me seize and I questioned what kind of life that was. It upset me to realize that I can't even get happy or excited anymore because I can seize. Even happy things or happy times can be stressors and trigger the seizures.

I was mad. I was upset. I was thankful to be home, but wondered why God would give me in the instruction to go home when I couldn't do anything I wanted to do. I knew I needed to focus on something spiritual to get rid of that anger. I got my book "100 Days In The Secret Place" and randomly opened it to a page. I've quoted from that book before, but God laid it on my heart to just open it and He led me to read about how this isolation can be so very positive. I will share a large part of what I read that touched my heart so much:

"There are two ways for the soul to be cleansed. The first is through affliction, anguish, distress and inward torment. The second is through the fire of a burning love, a love impatient and hungry. It is true that sometimes the Lord uses both of these ways to deal with our souls. All revelation and insight into God, all true experiential knowledge of God, arises from suffering, which is the truest proof of love.

Oh, how I hope and wish for you that you can understand the great good that comes from tribulation. Tribulation cleanses the soul. The cleansing of the soul through tribulation is what produces patience.

Within tribulation can come inflamed prayer. In the midst of tribulation we can exercise the most sublime acts of love and charity. To rejoice in the midst of tribulation brings us near to God. It is tribulation that annihilates and refines. It is that which takes the earthen and transforms it to the heavenly. Out of the human it brings for the divine...transforming one and bringing it to the other, uniting them with the Lord.....

(Cont.) There are two kinds of solitude. There is an outward solitude when one simply does not speak, or speaks little. There is also an inner solitude. Inner solitude means forgetting about everything around you, being detached from it, surrendering all purpose and desire and thought and will, and then coming before the Lord. This is true solitude. You will find it to be a sweet rest and an inward serenity...found in the arms of your Lord. For that believer who is able to stay in such a place before his Lord there will be a great number of discoveries.

For the believer who comes this far there is the discovery that the Lord converses and communicates with the believer in his inward parts. It is in that place the Lord fills the believer with Himself...but fills him only because that person is empty; He clothes him with light and with love because he is naked, lifts him up because he is lowly, and unites him with God and transforms him, because he is alone.

I see this solitude with God as a figure of eternal bliss - a picture of that further time when the eternal Father will be forever beheld." - Michael Molinos written in the 1600s.

So I thought about this isolation and realized that it is a time of solitude and that God planned it that way. When I try to do what I WANT TO DO, He has a way of literally shaking me right out of it and putting me back to solitude. He is working on me so much - and I have a lot to work on, believe me. However, reading that and realizing that most people never get this kind of solitude made me realize how much God is trying to reach me. I trust He has plans for my life that include wonderful things but I'm in a temporary fire. I am being melted down and reformed into what He wants me to be before He sends me to the next part of my life. I read so much more from that book and at times would read and then lay the book on my chest and just rest in God's presence. I would close my eyes and thank God for the prayers He has answered for me. I realized how "human" I've become with my pity party about not being able to see people. That is a temporary thing. I will get back to a normal life later but even then I will have to continue to turn towards God every day and instead of being the "old me", I will be whatever God has in mind for me to become. So, yes, I'm wearing an oxygen mask all the time, and yes I am still dealing with hard IV treatments, and yes I get frustrated with how slow my progress is. Those are natural human emotions. However, they are not what God wants me to feel. He wants me to see the many improvements He has given me and the many, many prayers He has answered. He wants me to focus on my daily life - not worry about tomorrow - just focus on Him every day so that I give my burdens over to Him daily. He has let me know this is temporary, but He also lets me know that temporary doesn't mean my understanding of that word - it means HIS understanding of that word - HIS understanding of time - and I know that HIS timing is always perfect.

I know this was a long one. But, I felt that others might read those same passages I read and feel a peace resting in their soul. I know it changed my outlook a lot. God is always present. He is always near. We only have to turn inward, seek Him in the Holy Spirit He granted us with, and be silent. Solitude and serenity actually go hand in hand. I will be very happy when I get to visit with friends and family, but for now I will seek the serenity of solitude and see how I can learn in this time how to be more loving and more patient and seek God's will for me. Instead of complaining about what I can't do, I will turn to God and see all that He CAN do. He can do so much if we only give control of our lives to Him. It's a hard thing to do, I'm still working on it and will probably continue to work on it daily until my last days because it is so different from what our human brains want to do. I pray that God teaches me many things through this solitude and that I accept the serenity that comes from merely being alone with God, soaking in His divine love.

Yesterday and today my daily calendar once again has good verses that go along with what God is telling me. Yesterday's verse:

"God is the strength of my heart and my portion forever." Psalm 73:26 (NIV)

Today's verse:

"Seek first his kingdom and his righteousness, and all these things will be given to you as well." Matthew 6:33 (NIV)

Much love-
K

New routines

2010-05-05T10:25:00.003-05:00

I haven't forgotten to write in this blog. I've simply been too overwhelmed with all of the changes going on in my day to day life. I've been waiting to hear God tell me when I need to write something else about what I'm going through. However, since it has been so long, I wanted to give you all an update.

I am home and the two day drive took its' toll. My husband rented a minivan that the middle seats could fold down into the floorboard and the big back seat was where I made my "nest". I had two twin memory foam pads, blankets, my eye mask, and most importantly we drugged me to the hilt to keep my central nervous system from going haywire. We broke it into 6 hours of driving one day and 6 hours the next day. I was exhausted and believe me, not one single suitcase or box has been completely unpacked.

We saw the doctor here and I came very close to having a seizure in his office. The noise of people walking down the halls of the hospital, the ding of the elevators, the flourescent lighting added to the stress of my first meeting with this doctor - well, by the time he came in I was a wreck! Thank the good Lord above that I took my Ativan with me so while I had a lot of shaking and tremors I did take the Ativan in time to stop a full on seizure. He has me on the same regimen as my Kansas City doctor - IVs twice daily, prescriptions, etc. He said I was a "very difficult case" and that we would need to come back this Friday for a real exam. I was shaking too much for him to be able to do anything but check my blood pressure and listen to my heart.

IV home care is good for me because I'm not dealing with the noises of the clinic, but I'm having to get used to the new equipment, bags, etc. that this company has. I have a nurse come once a week to take my blood and do a dressing change for my PICC line. The stress is still there though because running your own bag, wrapping up your PICC line, remembering everything I have to do while on IV Benadryl is all overwhelming. M and I are trying so very hard to adjust but neither of us deal well with change. He's used to being here and working in his downstairs office all the time. Now he has to check on my, feed me, sometimes help me with IVs, etc. I feel like screaming when I think of all he has to do for me! I'm still battling seizures in the afternoon as my temperature will go up to 101 and that makes everything worse.

Good news is that I am HOME - I am FINALLY HOME! Even though no one can come see me because when I get excited I may be fine in the moment but will often seize a few hours later. That's the hardest part of being home - I want to see my family and friends, but I just can't do it right now. God is still working on me and my control issues, my handing over my fears and stress to Him, and He tries to get me to focus on Him - but I sometimes forget. When I look away from God I get angry about this life. I"m writing this with my oxygen mask on and staring at an empty IV bag from this morning. It's hard - it's not something I can just jump into, but I know God will provide for me and never give me more that I can handle!

Now I'm off to nap - here's my daily verse. One of my favorites that I know I've used before but it seems quite fitting for the day I'm having:

"Blessed be the Lord, who has given rest to his people." 1 Kings 8:56 (NRSV)

Much love to you all-
K

Changing plans is God's specialty

2010-04-22T17:37:00.002-05:00

So, I’m writing this as my last blog entry from Kansas City. I haven’t been “magically cured” but I always said that God was the one who led us here and He would be the one to lead us home. In a quick turn of events I will be home soon. Before we came out to Kansas City we knew of a doctor in our hometown who treated Lyme Disease, Bartonella, etc. with IV antibiotics but instead of a clinic setting the patient did IV antibiotics at home. At that time I was much too ill to attempt something as scary as treating myself with IVs when I knew nothing about them. After feeling a push from God my husband met with the doctor in our hometown last week. They discussed my case and he looked over my current treatment protocol. My doctor in Kansas City had even recommended I should try and get into see this doctor once I was home. They have worked together with several Lyme patients who have come from Alabama to my Lyme doctor’s clinic here in Kansas City. When the new physician reviewed everything he said he would be happy to take me on as a patient. We all thought this meant in a few months when I was more “stable” health wise. My blood work from last week showed that I’m still far from “stable”. My hemoglobin is low again, my red blood cell count is low, my hematocrit level is low, my platelet count is low, etc. All of this is due to the Babesia and it shows why I’ve seen an increase in my seizures.

However, after praying to God to please make His will crystal clear to both me and my husband several things occurred which all led to us feeling God was now leading us home. The financial burden of living away from home and receiving treatment at the clinic was a big factor, but an even bigger one was that I know how to run IV antibiotics now, as well as inject Heparin, IV Benadryl, etc. The past 10+ months have really been a crash course in how to treat myself with IV antibiotics, take care of a PICC line, how to time the IV bags so as not to cause pressure on my heart, and the list goes on. I was far too sick to even consider this option a year ago, but now it is very much what we feel God is leading us to do and it is definitely what we want to do. It will cut down on expenses to not have an apartment in Kansas City as well as the clinic fees which of course include paying for the nursing staff. The real key is that I would be able to do IVs at home and away from the constant noise at the clinic. I had 4 seizures in less than 3 weeks due to the above referenced blood work showing how the Babesia is tearing my red blood cells and coming out even more. But the seizures also come from the stress and noise of the clinic. At home I would be able to control my environment so that I would not be under such stress. Also, I miss living with my husband terribly, not to mention my family and friends who I haven’t seen in almost a year.

I did get put on oxygen and it has worked well for me. I have a large liquid oxygen machine that I sleep with at night and use during the day here at the apartment as well as a portable machine that I use when I would go to the clinic. The company we use here has a location in our hometown and they met my father at our house today to bring a large machine and a portable machine that will be waiting on me when I get there. The company will be picking up the machine and portable here on Monday so it seems to have worked out well – which is what happens when God has made plans for you. Things just have a way of working out because God is leading you down the path He has made for you. He goes before you always clearing the way for you to follow.
Today was my last treatment at the clinic. It was hard to say goodbye to the wonderful friends I have made during my time here. I don’t mean just my fellow patients, which is hard enough, but the hard working and wonderful nurses who I have been blessed to have. Everything happened so suddenly that no one knew until yesterday that I was leaving. Many of them didn’t find out until today. I think that is also very much a “God thing” because the stress of stretching out long goodbyes would have been too much for me to handle.

Now, while I may be home, I will of course still be on treatment. My sound sensitivity is at an all time high and my central nervous system is shot. I have wonderful family and friends who will want to come and see me, but unfortunately that won’t be a possibility at least for the first week or two. The sad thing about these seizures is they can be set off by any stress and stress doesn’t just come from bad things, it comes from excitement as well. I had a very difficult morning balancing between saying goodbye to friends and being excited over the prospect of finally coming home.

I ask that you continue to pray for us as we go through this transition. God has made His will for us so clear we couldn’t help but see the writing on the wall and as stressful as this all is, we know He will be with us during the best and the worst of it. My doctor here says I can expect the seizures to last for the next year or two although hopefully they won’t be nearly as severe or frequent. We met for awhile this morning and we are on very good terms. They all understand that you can only stay away from home for so long and I made it clear how thankful we were for all of their help. We know that without getting to this clinic I would not be here today and for that I will be forever grateful. As I said, God led us here in His timing. As always, He knew exactly what was going to happen while I was here and He knew when He would lead us home and we just had to make sure and pray that we could see it as well.

Pray as we drive the 12 hours back home. We will be breaking it up into 2 days and my husband rented a minivan so we could have room for everything, but also in order for me to be able to create a makeshift bed and try and not see the road due to the fact that treatment causes me to have motion sickness. Also, the sensory overload of all the cars and trucks on the highways and interstates are definite triggers for seizures so we are going to try and keep me lying down with something over my eyes. My sweet mom will be following us in my car which will also be filled to the brim with all sorts of things. I never realized how much I had acquired over these past 10 months. Of course, there were clothes and shoes I needed for the horrible winter weather we had, but I’ve also gotten so many wonderful and precious gifts from so many people that I have much more than I thought to take home.

So, there you have it. The last entry from Kansas City, a city I won’t miss, but a place full of people that I will! I will continue to write this blog as long as God leads me to do so and I hope you will all continue to read it and keep us in your prayers. We had hoped to have me in better physical shape before coming home so your prayers are still greatly needed and as always very much appreciated. I’ll write again next week from the comfort of my own bed – YAY!

I know I’ve used this verse before in one of my entries, but found it so very comforting to see it on my calendar for today:

“You hem me in – behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain.” Psalm 139:5-6 (NIV)

He has definitely hemmed me in and I look forward to where He leads us next.
Much love-
K

Spring, change, and breathing in fresh air...

2010-04-08T20:31:00.004-05:00

As much as I get frustrated over all the trivial day to day stuff here, I also see all the results I am getting. Sometimes it's hard to see improvements in yourself, but the improvements are so dramatic that I DO notice them. M notices them every time he comes into town. So M and I thought we had OUR own "when K will be coming home game plan" for our meeting with the doctor. WE had been going to say that we wanted to know the risks/rewards of me coming home in a month or so. Then God reminded us that HE is the one who has the plans. He will tell our stubborn selves when it’s time for me to leave. We were trying to make things happen because we both want me to come home so badly. Before we could meet with the doctor on that Saturday, I had a seizure on Wednesday. As far as seizures go it was pretty much the same as the others I had been having regularly 2 months ago. It was after the seizure subsided that things changed. I tried to take a sip of water and could not get it down. My throat felt like it was closing up and the water came right back out. My sweet M was there to grab the nearest trash can for me. I can’t explain what happened next except to say I seemed to be having the worst case of “dry heaves” I’d ever dealt with and it was hard to take a breath. I told M it was muscle spasms. It felt like someone had grabbed me by the neck and was choking me. Further down my esophagus it felt like there was a vise grip being tightened and the pain was pretty bad. The nurses got the doctor to come in who agreed I was dealing with “intense internal muscle spasms”. Basically it was like having a seizure on the inside. The doctor had M sit with his back to my back for me to lean back on and stretch my chest muscles out, basically to open my chest up to breathe. The nurses administered more Benadryl into my IV line while my doctor forcibly held my chin up since the muscles in my neck were drawing my chin down to my chest. They put me on oxygen to help me take really deep breaths to calm the spasms. My doctor massaged the muscles down the sides of my throat to try and calm it down. It was a scary incident in some ways but God allowed me to know what was going on in my body. Fear can make incidents like this one so much worse. Anytime your body is not working properly it is normal to be scared. But, if you understand what is really happening, if you know that you are really going to be okay, it helps tremendously. Also, God has always allowed the worst seizures and incidents to happen while I’m at the clinic where help and medication is at our disposal.

We hoped the seizure was due to the medication I started back to fight the Babesia. We still felt WE could talk to the doctor about OUR plans. We have gotten in with a doctor at home who works with my doctor here and is less than 10 minutes from our house. WE had plans. WE had things covered. WE thought WE knew best. Then on Friday I was done with treatment and M was waiting by my cot and chair while I went and signed out. While I stood up there I knew all I wanted to do was get to the Ativan I had in my backpack, shove them in my mouth and get to the car – to get to the “quiet”. I barely made it around the counter before I started to stutter and M ran to catch the front of me while a nurse was trying to pull me up from the back. M carried me back to my cot where I had to get an Ativan shot and wait the seizure out. Again, after the seizure, I had the internal spasms. More Benadryl was administered as was oxygen and I knew how to counteract this time. It was still almost an hour before I could leave to go home. My wonderful nurses who were supposed to be able to leave at 6:00 on Good Friday took such wonderful care of me and repeatedly told me they were not concerned with when they got home, they were concerned with ME. So many of them pray silently over me and they are all so very caring. I believe that’s one thing that makes this treatment so different. You are with a rotating group of about 8-10 nurses. You have one for 2-3 days straight and then another and basically after you’ve been in treatment for awhile, you form bonds and friendships with these wonderful caretakers and they do the same.

Saturday morning, before our meeting with the doctor that afternoon, I had early signs of those internal muscle spasms and knew to take Benadryl and to take a couple of puffs of my Albuterol inhaler to open the airway, and to massage my neck muscles. By this time we knew God was telling us to leave my health is HIS hands. The doctor knows how much we want me home, but that was when we thought we were through with the seizures. The good news we were able to discuss is that my weekly blood tests are finally getting into normal ranges. That means my red and white blood cells are in normal ranges as is my overall blood level. My metabolic panel is even normal – potassium, chloride, sodium, etc. It’s the first time since I’ve been here that my weekly blood work has been normal. The doctor had some other tests run last week and everything came back normal with the exception of the Babesia which we already knew about. The doctor is still working on tests to see why I’m having fevers every day and my sugar has been high in the morning so the nurses will be doing finger prick blood sugar tests for a week to see if that is a problem or if it’s just that I eat too much sugar – I’m betting it’s because I’m eating too much sugar. But it’s a battle just to eat anything. It’s even harder to find something I want to eat and I have to eat to endure the treatments.

The Saturday night of the doctor’s appointment, I had another incident of internal muscle spasms around 11:30. It was much more intense than the others. I took several puffs of my inhaler, took 75 mgs of Benadryl, some Ativan and I simply tried to mentally relax my muscles. I’ve done this when I’m passing kidney stones – just focus on my breathing and not on the pain. The pain was bad but I held my chin up with one hand and rubbed my throat and chest with the other. M got my fingertip pulse and oxygen monitor and then put the electric blood pressure machine on my other arm. My heart rate didn’t get above 130 (I’m normally around 60-70) so that was good. My oxygen saturation didn’t drop below 96% either which is good. It helps to see those numbers and know that I am breathing and I am getting oxygen. I also have a tendency to rock back and forth when I try and focus on my breathing. I sit with my legs crossed in a yoga type pose with the back of my palms resting on my knees. I push my chest out to draw deep breaths. I rocked back and forth as I did this and before I realized it I was humming. Well, not like a steady humming since I couldn’t breathe well, but I guess like a hum/grunt noise. I was humming, “Jesus Loves Me”. I don’t know how long it’s been since I sang that song but I started humming it almost subconsciously. They say the devil cannot stay where God is present and I believe that the devil uses a lot of my illnesses, especially the “scary incidents” to incite more fear in my heart instead of the peace God gives me. As I hummed my rates came into normal ranges and the stranglehold I felt around my neck and chest eased. I know that’s a “God thing” as a friend of mine says.

God is definitely there in the midst of all of these incidents. His presence is almost palpable during my seizures. In fact, that’s the only good thing about seizures is that I feel Him there around me and I talk to Him in stuttered prayers and thank Him for His love and protection. I don’t want to have seizures, but I do know that God will never give me more than I can bear. I may wish things to be easier, but that doesn’t mean I cannot handle them. We all know the verse of “I can do all things through God who strengthens me” and I believe I’m living proof of that. So many people will tell me how strong I am, how well I handle things and it baffles me because it’s so evident to me that I’m NOT the one handling things. Any strength you see in me, any good you see in me, and any inspiration you might get from my story or my life is not FROM ME – all those wonderful things are from GOD. He is always behind every good thing anyone sees in me. I am only human and I have to admit how much of this I absolutely hate. I don’t want to have seizures, I don’t want to be in treatment, and I don’t want to feel like I’m turning 85 this month instead of 35. I don’t want the portable oxygen concentrator the doctor is ordering for me. I want to be strong, I want to be able to just go to a store without feeling like a seizure will strike, I want to have that “normal life” that others seem to have. But guess what? This is the life I was given – this is the path my Father had in mind for me all along. I have fought so hard for so long to be able to do what others seem to do with ease. I wanted to be able to go, to do, and to experience everything like other people. But, I’m having an experience of a different kind. I’m learning through the fire and sometimes that’s the only way God can get your attention. He got my attention a few years ago but as I’ve said a million times, He had to strip everything away from me before I could really know what it’s like to lean solely on Him. I wish I weren’t so stubborn because it honestly took ALL of this to reach inside my heart and change it for the better.

He led me to start this blog last May and while I do use it as a tool to let family and friends how I’m doing, God made me realize that I could do so much more than that through this venue. I was hesitant to allow all of this be “public”. Anyone can run across this site when they’re browsing around on the internet. That’s why I try hard to pray about what I write on here because I have no idea who might be reading it. I pray that I do justice for the job God set before me. I was raised in the church but didn’t go much during my 20s, but that didn’t keep me from praying. I always thought, “You don’t have to go to church to have a relationship with God” and that’s true in a sense. However, after M and I found a church we realized how much it adds to your relationship with God to have “spiritual mentors” to learn from, to get advice from, and to see how they handle hardships in their own lives. What I learned from some of my “mentors” was not just HOW to pray but how to LISTEN. God seems to always tell me to pray for His will to be done – probably because He knows that I really want to control everything in my life! I have had to practice this new idea of giving all control over to Him over and over again and I still fall short many times. I know I can pray to be healed, or to go home, or for this experience to be easier. I do pray for those things, but mainly I pray that His will be done in my body, my heart, and my life. I have no idea where things go from here but I know He does and I put my trust in Him. This verse speaks to me as I put my future in God’s hands:

“You hem me in – behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain.” Psalm 139:5-6 (NIV)

Finally, my last original “roommate” has been released from treatment. Please pray for my sweet and wonderful friend, Stef, who will face the challenges of oral treatments now. I miss having her terribly, but God blessed me with her for almost 10 whole months and I know His plan included me having her as a lifelong friend. On that note I will say they are placing a new patient in my room on Saturday. I don’t know anything other than the new patient is a female and she is supposed to be extremely sound sensitive like me. Pray that the stress from meeting a new person does not cause me any problems. Pray that I am someone who this new person will like. Pray I can talk to her if it is God will for me to do so. Right now it’s almost impossible for me to talk to “new” people due to my own internal stress and the fact that my brain is constantly going 90 miles an hour, hence the seizures. It may be that God is sending someone to me that could help me or maybe that I could somehow help. I just have to trust that God will see me through this new transition because change is an extremely stressful thing for me right now.

I pray you are all doing well and rejoicing in the fact that spring is upon us. I love to see all the new leaves and flowers bloom. They are constant reminders to me that God renews the earth as well as our hearts and minds.

“Praise the name of the Lord your God, who has worked wonders for you.” Joel 2:26 (NIV)

“The eternal God is your refuge, and underneath are the everlasting arms.” Deuteronomy 33:27

Oh, and for those who think I just sit around thinking all the time, well, I don't. I believe that you have choices in life when unwanted or unexpected things happen. You can laugh or you can cry. I've cried some, but I've laughed more. Below I decided to share just one of the things I do in treatment to make myself laugh (and yes, I laugh at myself ALL the time). I'm in the "West Side Treatment Room" here at the clinic and the other room is of course the "East Side Treatment Room" but everyone refers to them as "East Side" or "West Side". Hearing the names I thought of the rap songs about gangsters who claim their turfs by throwing gang signs, wearing certain colors associated with their gang, etc. I was by myself thinking these things when I came up with an idea for an IV patient gang side. This picture is my idea of what the "West Side" gang sign should look like. So, yes, I find my own brand of humor in this situation. I just think you have to do that to get through life.

That's an upside down "W" with my IV line going through my fingers.

Confusion and Contentment

2010-03-28T19:19:00.003-05:00

My abdominal pain has subsided, not sure if it will stay away but it’s nice to have it ease off some. My fevers are still with me though. My normal body temperature is about 97 degrees. But I start out after morning treatment around 99 degrees, by early afternoon I am at 100, and after my afternoon treatment session it’s around 101 degrees. Advil and Aleve don’t bring the fevers down. In fact, they don’t even keep them from going up. My body seems to be getting used to them, but they make me much more tired and I don’t feel like doing anything other than lying in the bed. The doctor plans on running several blood tests on Tuesday to see what might be behind this. I was hoping nothing would show up and then God let me see that this is the best time for things to show up - while I am HERE and getting treatment! It would be much worse for things to show up once I'm home. So, I pray that the doctor finds a cause that can be fixed by tweaking my treatment regimen.

On a brighter note, my sweet M came in town on Thursday and I love having him here. We have an appointment with my doctor on April 3rd to discuss what's going on with me, how treatment is progressing, to review my most recent lab work, etc. I love having him here for these meetings and he tries hard to make it for all of them. He's going to be here for this meeting and will be back in early May, just in time for our wedding anniversary, but that means he has to miss my 35th birthday which falls right in the middle of April. Mom will be here of course, but it will be the first time in 8 years that I haven't spent my birthday with M.

I think I want to just forget my birthday this year, I mean, this definitely isn't where I thought I would be when I turned 35! It just hit me that I’m so stupid for thinking that way when I should just be thanking God that I get to have another birthday! It's amazing how the human brain works! It can be so unproductive so much of the time. I believe we all have these "life goals" in our minds, or ideas about where we will be or what we'll be doing at certain ages. I always thought that I would get married at 28, and oddly enough I did. But after that I had all these other plans - like working until I was about 32 and then trying to start a family. I definitely thought that I would have at least one child by age 35. However, God has other plans for me. I have often gotten upset over the fact that I want to have children so badly but can't even try to do that for now. In fact, I will be on oral treatment for about a year after I leave here and the doctor says I will need to take a year to allow my body to simply rest from the years of being sick as well as the years of treatment. My body will be tired and the doctor says trying to get pregnant before then would put too much strain and stress on my body. I sometimes do the math and think, "I won't even be able to start trying to get pregnant until I'm 37!!!" However, I have to lay all those worries in God's hands.

I have to trust that God is in control of my life and that He has good things planned for me. My Aunt Martha sent me a devotional book a few months back. It's just for women and it is divided into subjects. I got to the page titled "Children" and read the first part about the challenges of motherhood. I know being a mom is a difficult job, but at the same time, it's hard for me to think about people complaining about their children when I long for a child so much. Then I read the next segment under that topic and it really hit home for me - I know God put it in front of me because it has helped me a lot! It reads, "Some women live with a strong, unrelenting longing for children that seems to go unanswered. If you are dealing with this heartache, you can know that God has placed the desire to be a mother in your heart - and not just to frustrate you." It went on to say that we ourselves are adopted into God's family and mentions different options that God might have in mind for you. It's the last sentence though that really spoke to my heart. It reads, "Ask God to help you find the children He has ordained for you." That is an amazing thought. God might bless me with children one day, but even if I don’t have children, I trust that He has plans that include children being in my life. That could mean adoption or it could me working with children - I did graduate college to teach preschool! I just wasn't able to do so because my immune system was already so compromised and I stayed sick the entire time I taught preschool.

I didn't start this entry thinking I would go into this particular topic, but I guess it is weighing on my mind and my heart. I believe I’ve been frustrated with God about “being behind” where I thought I should be by this point in my life. I think that’s exactly why He had me write all of this. Again, I have to hand over the "where I thought my life would be by age 35" plans to God. I never thought I would be going through this treatment process. I never thought I would be writing about such personal issues in an open blog for the world to see. I never thought I would grow so much in my personal relationship with God in such a short amount of time. I never thought I would find peace in the midst of what sometimes feels like pure hell. I never thought I would have seizures and be able to say prayers of thanksgiving during the worst of them. There are so many things "I never thought about" that when I step back and try to see my life in a big picture sense, I see so clearly that God had a very specific plan for my life. He knew all of these things would happen. He has clearly given me His strength to handle things that would have crushed my mind, body, and spirit just a few years ago. He has already given me in so much, but I could only see that once He opened my eyes to all of His blessings. So, I am not where I thought I would be by age 35. I'm not anywhere close to the life I had envisioned for myself. The good news is that I am working on becoming the person God wants me to be! Even though treatment is hard, being away from home is hard, being sick is hard, I can trust in the fact that God is with me. He has blessed me with wonderful treatment friends and given me new friends at home that have reached out to me in so many ways. He has given me a husband and family that support me through all of this. He is in control of my life and I am finding myself more and more content with that fact. I have always been a "control freak" but now I'm working on being content in the fact that God is in control. I now see how horribly I mess things up when I try to control them!

So, writing this has given me clarity and peace. Sometimes I write entries and I know God is using me to speak to other people, but this time I think I started writing and He pushed me down a different path and is speaking to me about my life. This entry may touch someone else's life and I hope that it will, but I think God needed me to step back and stop trying to compare my life to other people's lives. Isn't that such a difficult task? It's so hard not to try and see how we "measure up" compared to others. I know that I am often jealous of people who don’t have health problems, who have children, or who even just have jobs that they love. I think the devil LOVES when we become preoccupied with how our lives look in comparison to others. Everyone knows the feeling of wishing they had someone else’s marriage, someone else’s home, someone else’s career or even just someone else's car! However, God never wants us to "envy others" so I think He has given me the desire to tackle this subject of having children, a subject that is so close to my heart, because I have been envious of other people's lives that look so carefree or easy from the outside. He is reminding me that everyone has their own burdens and it's not up to me to judge how "easy" someone's life might be or how "blessed" they are. My job is to live my life the way God wants me to live. I may never have the life I thought I would have - but I pray to live my life the way God wants me to. I often fall so short of that goal. I don't always say the things I should, I often say the things I shouldn't, but I thank God for giving me a new start every day!

I pray that everyone who read this takes a "step back" from their lives and is able to see the many blessings that God has granted them instead of constantly finding different ways to see how their lives measure up against other people’s. I pray that we all stand in awe of what He is doing in our lives. He is in control of all things. When we think we are in control we mess things up and things would go so much smoother if we just asked God for His help and allowed Him to control our lives. I pray that we all hand our worries, our burdens, our "where we think we should be" ideas over to God. I know that's the only way I will get through any of this. I have to keep on handing things to God – but isn’t it a wonderful thing to know that His hands never get full and He always has room for ALL of our worries and troubles!

My daily calendar is once again bringing me messages that are no coincidence! I was feeling upset about my current situation and felt very far from God just yesterday. The calendar verse yesterday was:

“When you draw close to God, God will draw close to you.” James 4:8 (TLB)

Now today’s verse is:

"The Lord is my strength and my shield; in him my heart trusts.” Psalm 28:7 (NRSV)

So I’m trying to draw closer to God, to know that He is my strength, and to put the desires of my heart in His hands, trusting that His “life plan” for me is much better than the one I thought up on my own. It's about finding contentment in God no matter what. When life seems to be surrounding you with confusing circumstances, step back and put your life in God's hands. You will see that His plan may not be the same one you have for your life, but it's the best plan for your life. Allowing God to be in control of your life doesn't mean you won't have hardships, but it does mean you will have God to carry you through them.

Much love –
K

Just a simple prayer request

2010-03-23T16:18:00.003-05:00

Update: The sonogram went well and all was normal. However, since I'm still having fevers every day and some major abdominal pain the doctor wants to run a lot of blood tests to rule out hard to diagnose infections, parasites, etc. The nursing staff will draw my blood on Tuesday - which is when all IV patients get our weekly blood draws done. Some of the results may come in quickly but others may take a few weeks. The doctor doesn't think I should be having such severe pain if this was only Cat Scratch Fever. I'll update more as I find out more information. Thank you all for you sweet prayers! I'm glad there were no problems with my internal organs that would have required surgery. I just hate to have these fevers and hope we soon find out what is behind them so we can jump on getting rid of whatever it is! I am trying hard not to view all of this as a "setback" because I want to get all these hidden infections to surface while I'm here with the doctor and on IV antibiotics. The more I can kill while I am here, well, the less I'll have to kill on oral meds at home! God is in control over this situation and I know He will lead me down the right path for my continuing health problems. He's already gotten me to a much healthier place than when I got here last June!!! Praise be to God for all of the healing I've already received and all the future healing He has in store for me!

ORIGINAL POST:
The doctor wants to rule out any major problem before saying that I truly have "Cat Scratch Fever". My fevers have been constant. I've kept an "elevated temperature" of at least 99 degrees for three weeks. For someone whose body temperature is normally 97 degrees that's like having a fever. The fact that it goes up when I am having room temperature IV antibiotics pushed through my body for 2 hours is very weird. However, it goes up to 101 every day in afternoon treatment.

I say this to ask for a specific prayer request. Due to the fevers and the severe abdominal pain I've had, and the bloating of my stomach - basically my belly sticks out from where my esophagus meets my stomach all the way down to my lower intestines/lower abdomen. We've known my spleen was swollen because 1) I have active mono for the 6th or 7th time and
2) the spleen will swell when it's processing a lot of toxins - or the die off of bacteria. It's tender, swollen and somewhat painful, but I did not think that was much of a problem.

However, my specific prayer request is for tomorrow morning. The doctor has scheduled me for an abdominal sonogram to make sure that everything "looks normal" and it's set for 8:00 a.m. Due to the migrating pain I've had they want to make sure my appendix and other organs are not inflamed/swollen too much or there's nothing else causing the problem. I would hate to have to go through having my appendix removed! Not because of the pain, but because it would be another set back to getting my immune system back in working order! That's why I ask that you pray that the results are favorable. I always pray for God's will to be done - and I'll pray that tonight as well. However, we are to present our specific requests to God with thanksgiving and prayer so tonight I'll be speaking to Him specifically about this!

Thanks to all of you who continue to pray and send me loving thoughts - I do feel every one of them believe me! Without all of your prayers I would never have been able to last 9 months out here! I love you all!!!

OH - my daily calendar verse for today is quite fitting I think:

"To set the mind on the Spirit is life and peace." Romans 8:6 (NRSV)

Much love to you all-
K

Battles and Wars

2010-03-16T20:41:00.003-05:00

Editor's note (March 17th): I found out this morning that the symptoms I describe below are not completely due to toxin build up from the Clindamycin. The doctor believes I have "Cat Scratch Fever" (yes, that's a real disease) which is caused by Bartonella bacteria. Just wanted to be clear on what's happening.

Update on the health situation…hmmm, where to start? Well, the IV Clindamycin is killing off a lot of stuff which is very good, but my body seems to have overloaded on toxins that are the waste of killing off the bacteria and stuff. Toxin buildup is hard on your body. I’ve been running a fever every day for close to 3 weeks now. At first the doc thought there was a bladder or kidney infection since I had been passing a stone a few weeks ago. Turned up negative and that is good. However, Sunday night I had some of the worst abdominal pain I’ve ever experienced. For those of you who know me, well, that’s saying a lot. I was up until 4:30 a.m. with the pain and felt so awful that I did not go to treatment Monday morning. I went that afternoon and just got IV fluids. I went this morning and got fluids again. I don’t go on Tuesday afternoons anymore just to give my body a break, but I will have IV fluids again tomorrow. In fact, I will have IV fluids until I feel like my body can handle the antibiotics again. M and I talked and we are asking the doctor if I can take a week off at the end of March/beginning of April. We have a meeting with the doctor on Saturday, April 3rd and wanted to have me off IVs for the 5 days before that. We’re hoping to see where I might be off the meds. Basically, the IVs make you feel worse whether it’s from killing off bacteria and leaving toxins or with just the side effects that come along with such strong doses of antibiotics. We think that by having a week off we might be able to better judge where I am physically. We are ready to try and bring me back home to start the oral antibiotics.

The oral antibiotics have their own side effects and also leave toxins in the blood after they kill off bacteria. However, I’d much rather be in my own home, my own bed, feeling horrible than to be away from my husband and my family and still feeling horrible. When we first got here we knew we would have to do IV treatments because I couldn’t absorb anything orally. We hope to see that I am better able to do that now that I have killed off a couple of infections that were in my intestinal tract. Right now I have yet to gain any weight, but that can be due to the IV treatments themselves. Clindamycin takes away my appetite, not that I had much of one to begin with, but at least I’m not losing any more weight.

So, today marks exactly 9 months since I started IV treatment. Every day is a battle. Getting up and going to treatment is a battle, as is treatment itself. The side effects of treatment are a battle. The being away from home for so long is a battle. But these are small battles in the grand scheme of the war that has been taking place in my body. We knew there would be more bad days than good (and there have been). We knew that none of this would be “easy” – physically, mentally, emotionally, financially, etc. However, we knew we had to wage a war against all of this because it was literally killing me. When it comes to your life, your health, you’ll find there’s not much you won’t do in order to “feel better”. We didn’t know how long this would take or how hard it would get or how much of a toll it would take on my body.

One might say we didn’t know anything about this war, but we did. We knew one thing that would get us through these continual battles. We knew one thing that would keep us fighting the good fight in this war. That one thing was our faith in God. We knew He led us to this place, to this doctor, and we trusted His plan. We’ve had to learn so much more about faith since we’ve started this war. This is what I think we have learned: Faith is not something you talk about or discuss in Sunday school. I’ve come to believe that faith is not a noun…it’s a verb. It’s an ACTION verb. Faith is stepping out into the unknown armed with only your belief that God is never going to lead you astray. Faith is stepping out of the boat and onto the water without doubting. Faith is knowing, even during the worst times, that God is there with you always. It’s knowing that while you may be having one of the worst days of your life, God is not torturing you nor has He forgotten you. I think my faith has been honed during my battles in this war. I have cried out to God and I know He has answered me by either giving me peace, or relief in my pain, or just the strength to get through that pain (or a seizure for that matter). I know that He has used all of these battle days to build my faith and to allow me to see that He is in control of everything. I know some might read this and wonder how I could say that God is in control of everything and yet He allowed me to get this sick and why would He do that? But I feel I’ve truly learned what it means when people say, “Ours is not to question why”. It took all of these “bad things” to get me where I needed to be to finally hear His voice. I’m battle weary, this much is true, but I’m still fighting and I think in the end I will win this war. Not because I will have my health, but because I now know that there is nothing more important than giving my life, my health situation, my everything over to God. I have learned what having faith in Him means. I will always have more to learn about faith but I know much more now than I did nine months ago. I know there is no way I could have endured the past nine months, there’s no way I would have even stayed here that long, had it not been for God Himself carrying me through all of this. I hope that I get to come home soon, but I’m leaving that up to God too. We trusted Him when He led us here and we trust He is letting us know when it’s time to leave and head back home.

I appreciate every single prayer people have said for me. It’s been so very humbling at times to find out just how many people have been praying for me. I don’t even know exactly how many, but at one time I think I was on church prayer lists in 15 different states. That’s amazing to me. I cannot even begin to explain how in awe I am that so many people have taken the time to read my rambling blog. I pray that I have used this venue to glorify His name, His grace and moreover His unfailing love. I want people to be aware of Lyme Disease and its’ many co-infections. I want people to understand how misdiagnosed this disease is and how it can destroy your health. I want people to be more aware so that their family members and friends don’t have to struggle through what I have gone through. However, I will say that God never intended the purpose of this blog to be about “Lyme Awareness”…it’s always been meant to spread “God Awareness”. I pray I have done that job justice. I will try and update you all again after my April 3rd meeting. As for now I’m just doing what I can to make it through my daily battles, knowing that God is carrying me through the battles and He is the one who is fighting my war. I cannot be grateful enough for all He has taught me through this nor can I explain how it took me feeling so bad to be able to truly feel His amazing love. I pray you all see some of the hard parts of your life as “faith-stretching opportunities” because that’s what they are. When you ask God to give you more faith just be prepared. He might point out that you have lots of problems that you could hand over to Him while you step out in faith and grasp onto the simple truth that He is the only one who can handle them.

“It is you who made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you.” Jeremiah 32:17 (NRSV)

“Finally, be strong in the Lord and in the strength of his power.” Ephesians 6:10 (NRSV)

“Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or sword? No, in all these things we are more than conquerors through him who loved us.” Romans 8:35-37 (NIV)

Much love-
K

Why is it so hard to be JOYFUL?

2010-02-24T11:33:00.003-06:00

C. S. Lewis wrote, “Joy is the serious business of heaven.” He’s right. We are all supposed to long for the day we will be with God in heaven and be surrounded by and full of JOY! So I started thinking about what we do every day while we are here on this earth. I realized that, at least in my case, I don’t feel joyful. I don’t wake up feeling joy. I wake up and think, “I don’t want to get out of bed.” We all probably wake up thinking of all the “bad stuff” we HAVE to do that day. All the errands, the day to day grind, all the "to do lists" - those are what we think about when we wake up. Or at least I assume that’s what most of us do. I thought about how we focus on the negatives of the day instead of the positives. We don’t wake up thanking God for giving us yet another day to spread His love and to feel JOYFUL! In fact, I think joy is the furthest emotion from my heart upon waking up each day.

These thoughts hit me hard. Why is it so very hard for us to be joyful? Why do we fail to see all the positives of a new day? Why do we not thank God for another chance to work on becoming more like the person He planned for us to be? Personally I have found myself in a “poor pitiful me” state as of late. Treatments are hard. Getting to the treatment center every morning at 6:40 a.m. and every afternoon at 3:20 p.m. is so hard. There are no breaks except for all the cancelled sessions we’ve had due to snow and ice. That’s another thing – the weather is horrid and has me in a down mood. I go to treatment most mornings and the temperature ranges anywhere from 10 below zero to a balmy 20 something degrees (note the sarcasm when I say “balmy”). As I write this it is 12 degrees outside and it’s already 11:00 a.m.! All of this is hard but the drugs are especially hard on my body and my mind, or at least my mental state! I haven’t gained any weight and I stay exhausted. I have to take so many anti-seizure drugs that are mood altering drugs and “downers”. Add to that the 200 mgs of IV Benadryl I take every day, the muscle relaxer, the MANY supplements, the anti-malarial drug for the Babesia, and the antibiotics (IV and oral) and it adds up to a body that is overwhelmed with medication and overwhelmed with such a strict schedule. Yesterday I woke up mad at the world because I HATE all of this. I hate it with a passion and I know that is a natural reaction after 8 months of treatment, 8 months of being away from my family and friends, 8 months of being in an “unreal situation” – one I never thought would one day be my daily life!

So yesterday I started to write this entry. It was yesterday morning during treatment that I began to wonder how I could come to hate something I prayed for so diligently. I prayed God would get me to this clinic and they would treat me. My prayer was answered. Here I am being treated and yet now my prayer changes yet again and I want to “GO HOME”. I cannot fathom how God deals with us humans! Here He has answered my prayer of desperation and I feel like I have become ungrateful for His answer. I feel like a spoiled child who cried for a new toy just to be done with it the next day. I feel guilty for not appreciating being here. I feel so unworthy of His love and grace – but He knows that. He knows it all. He understands my “lack of joy” over my current situation. Even though I rant and cry out, He knows that I do understand I am where I must be for now, no matter how hard it is. This is not forever, it is only a temporary situation, and He reminds me of that. He reminds me of His love. I have to stop and focus on Him and within minutes I feel humbled and undeserving of His continual presence in my life. When I focus on Him my problems seem to evaporate. I just have to remind myself to focus on Him when everything else seems to be falling apart. When I myself seem to be falling apart I must get on my knees and cry out to Him. He is always there, always with me, always watching over me and if I can get over own issues, if I can just stop focusing on the negatives, I can feel Him there with me. I cannot explain the sense of peace, calm and love that surrounds me when I feel His presence. Yet I must SEEK HIM in order to feel that peace. It’s so easy to look around me and find a million things to complain about, but what we all need to do is to refocus our vision so that our eyes are on HIM! I struggle with that every single day. I fail miserably so many times, but He graciously grants me another day to try again. He understands all of this and He carries me through in these times of trouble, but only if I put my full faith and trust in Him. That’s hard to do isn’t it? To give everything over to God every single day is not an easy task for us mere mortals.

After treatment I came home and ran across that quote from C. S. Lewis and I thought, “K, there is JOY in your heart because you are one of God’s children. He GIVES you JOY if you will stop long enough to receive it!” It was no accident that I flipped through a book and found myself staring at that quote about joy. It was God sending me yet another reminder that I must SEEK HIM. I must seek Him in order to receive the JOY He provides me with. From that JOY comes strength, peace, and contentment. Paul wrote about being content no matter the circumstances he found himself in. He was content when he was in plenty or in want and wrote he was content in sickness or in health because he found his contentment in GOD!

So I started to figure out a way to seek God, to force myself to find JOY in the midst of all of this. There is joy in treatment. There is the joy of friends who understand what you are going through. There is the joy of nurses who care so much for you and work so hard to do whatever they can to make you feel better. There is joy in the fact that God led me to this doctor who knows what is wrong with my body and is working on fixing it. I have to realize that there is no “cure” for Lyme disease, Bartonella, Babesia, etc. These “bugs” will live in my body forever but this treatment is knocking them down enough for me to feel better, to have a healthier life. I will probably never know “healthy” as defined by normal people’s standards. However, I will know I am healthier than I was by far. God can do anything and I never doubt that. He could kill all these infections in my body and He may very well do just that. However, if He does not that is not indicative of Him not loving me. It is just the path He has chosen for my life on this earth. I say treatment is a temporary situation and it is, but our earthly lives are also “temporary”. God said we would have troubles in this world but we can face those troubles with JOY if we focus on the fact that God is ever present by our side. With God anything and everything is possible. Sunday I came home from treatment and cried out to God that I could not handle this anymore. Within just a few days He reminded me that I might not be able to handle this, but He can handle it for me. That is a joyful fact. That is a fact that makes my heart full of joy.

Now my goal is to wake up every day and not get out of my bed until I thank God for giving me another day on this earth and to thank Him for the JOY He has placed in my heart. I know there will be many days that I fail to do that, but I am going to lean on God to help me to find the joy of His love in my everyday life. I can be joyful in this situation because God is with me and therefore who (or moreover “what” in this situation) can be against me? The devil loves to rob us of our joy. The devil feeds on our negative thoughts and bad attitudes and we have to put our feet down and tell the devil that he CANNOT steal our joy because God granted it to us and all we have to do is claim it!

“Our help is in the name of the Lord, who made heaven and earth.” Psalm 124:8 (NRSV)

“God rewards those who earnestly seek him.” Hebrews 11:6 (NIV)

“Isn’t everything you have and everything you are sheer gifts from God? You already have all you need.” 1 Corinthians 4:7, 8 (MSG)

Find joy in all you do my friends. It may be hard some days but that is when we have to remember that our help IS in the name of the Lord, that God rewards those who earnestly SEEK him, and that we do have all that we need if we have a close relationship with God! I pray we all find JOY!!! God wants us to be joyful – so claim joy every day! If you do I can guarantee that your outlook on life will change because God will change it. We just have to ask that He give us all new eyes to see that we can have joy in the midst of all of our “earthly troubles”. BE JOYFUL IN EVERYTHING YOU DO!!! Let people see love and joy overflowing from you! I pray for strength, for perseverance, for patience, and now I pray for JOY!

Oh, and this is a webcam shot I took of myself yesterday. No makeup, no shower, but thanks be to God - there is some JOY in there :)

Much love to you all!
K

Feeling His love on Valentine's Day

2010-02-14T20:53:00.003-06:00

I hope you all had a happy Valentine's Day. It was my first one away from my sweet, M, but we're experiencing a lot of "firsts" throughout all of this. He did send pretty flowers and nice chocolates and that was unexpected and very appreciated. Mom and I have enjoyed having the pretty flowers around since looking out the window just means seeing more snow! It snowed here again today and I've decided that M could never talk me into living somewhere that snow is a "regular occurrence"! I feel like I live in a snow globe and just when it looks like it's about to melt away, someone shakes it up and the snow comes down again!

As for the medical side of things I have been seizure free for a month, as of last Wednesday! YAY and THANK YOU DEAR LORD!!! I still have to be very careful and one of the anti-seizure meds has been doubled but I'm not scared that I am going to have one every afternoon like I had been before! The new antibiotic is working on killing off more "bugs" and it has made me more tired than the Doxy did. Of course, the anti-seizure medication can do that as well but definitely the combination is making me exhausted. Bad thing is that even when I sleep I'm not able to go into "deep sleep" but I'm napping more and falling asleep earlier at night and I know my body needs that!

I saw the doctor Thursday for a "check & see how I'm doing" visit. We were supposed to have a full meeting, but she came into the treatment room and I was in some pain and running a fever. I have a kidney stone, I know - big shock, huh? haha. But that afternoon I had shown mom where my rib cage was sticking out further on the left side than the right and I was having pain there. I knew my spleen was swollen and when I showed the doctor the decision was made for me to skip taking Mepron on Saturday (that's the anti-malarial liquid medication I take once every 5 days to help kill the Babesia). The swelling in my spleen is from toxin build up which is good because it means we're killing stuff off! It hurts, but at least I know the pain is actually progress. I'm supposed to keep my feet elevated to help alleviate the pressure but then it's just a waiting game for the toxins to be flushed out of my body. I try to see the fever as a good sign as well. I pray that it's proof of my immune system trying to fight some of this stuff. The fever makes me feel pretty rotten, but I can take feeling rotten if I know there's progress being made and I do feel that! Praise the Lord, I do feel like I can finally see and even feel progress in my body! Now, the kidney stone pain is just icing on the cake - ha! Actually, that is a pain I'm used to having and as much as I hate pain medication, the doctor wanted me on some in order to not wear my body out from pain or weaken myself trying to pass a stone without medication. I'm taking some pain medication and along with all the other meds I do feel a little overwhelmed. My mom says the amount of medication I take would put her out of commission for weeks, but I'm so very thankful to God that my body can handle this much medication!

I do hate taking pain medication though because it can make me feel down and depressed. Of course, so many of my prescription medications (like the anti-seizure medications, the muscle relaxer, the IV Benadryl, etc.) are "downers". Add another one to the list and it's easy to see why I might feel low! It's hard to feel that way but I know for now I'm doing what I can to help my body. I also know God understands everything I am going through and how my system reacts to all these medications. He is still with me through the low times and it is always then that He seems to point out things to lift my spirits. When I realized I had another stone my first thought was, "When it rains, it pours!" and then I realized what a stupid saying that is. I had the idea of changing it to "When it rains, learn how to dance in it and be thankful you aren't in a drought!"

I know that I am "allowed" to have bad days when I feel depressed and I don't expect, nor am I capable, of handling this all without having a day where I want to cry, or scream, or just pull my hair out. I am only human and those are human emotions and reactions. However, I am very grateful that God allows me to see my "lows" as normal but also that He immediately allows me to recognize feeling depressed as a side effect of all the medications. That is important because He is allowing me to view this all as "temporary" instead of feeling like there will be no end to my misery or suffering. I know He gives me the eyes to see things, both good and bad, as part of His master plan for my life. I cling to that plan, to His love and promises more than anything else when things get to be a bit too overwhelming for me. I envision what plans He has for my life when I am at home and regaining my health. I try to keep my focus on what He is teaching me through all of this and every time I think on it, I get the same answer - FAITH. He's teaching me to put all of my trust in Him because to place it elsewhere is where I was going wrong for years. I loved God, I knew He had a plan for me, but I felt like I was the one in control of my life. I was so hard headed about this that it has taken me being stripped of so many things to see what God intended for me to learn - that without Him I cannot do anything. It's been such a hard lesson, but one I wouldn't trade for the world. I pray that I never go back to thinking I can do things "on my own", but I'm human. We humans just have a hard time with clinging to God and praying for His will consistently. It's easy for me to cling to God now when I need Him so badly. But as a human, I know that when things are going well in my life, maybe when I am finally healthy, I will likely fail in clinging to Him every single day. I pray often that He will keep my eyes focused on Him at all times, instead of only when life gets to be "too much"! I also pray that if I am able to become a "healthy person" that I do not take a single day of that for granted, but I suspect I will. God is training me for many things right now and I think one of the big lessons I am to learn is that I must cling to Him not just every day, but every moment of every day. I pray that I learn how to do that consistently.

I pray that we all learn to not just thank God for the good things, or run to God when the bad things appear, but that we continually seek God's presence in our lives every moment. I pray that even when we fail, as all humans do, that we pick ourselves back up and remember it is by His grace that we are saved, not by our own works! How very thankful I am for that because if I had to count on my "works" for my salvation I'm afraid I would come up quite short!!! So, thank you God for being with me and showing me how to view a swollen spleen and fevers as progress. Thank you for allowing me to see my own faults and flaws and to know that you love me in spite of all of them (and there are quite a lot I must say)! I want to praise You in every thing I do and I know that I will fall short, but I pray You will show me where and when I fail. That with every failure You will teach me even more how to shine Your light and love on every one I encounter. I pray that You will guide me and show me the way to live my life following the path You have set before me. I am weak right now, and I may have a long road ahead of me before I "get well", but I am so thankful for the strength You give me that allows me to keep on going. Without You, without Your love, without Your guidance, without Your continual forgiveness of my many sins, I would be nothing. I want to be well, I long to be healthy, but You are teaching me to long even more for YOUR will and not my own and I am thankful for that as well.

I pray you all have had a blessed Valentine's Day. I know many people who get depressed around this "holiday" because they don't have a "special someone". I remember feeling the same way if I did not have a boyfriend to celebrate this day with. However, with my precious M having to be away from me this Valentine's Day, I feel God has shown me that I spent my day with a very "special someone" - I spent it with HIM! His love is never ending and all consuming and I have come to learn how to love Him with a passion in my heart that I never had before. I guess we should all realize that everyone's true Valentine is God Himself.

"May the Lord make your love increase and overflow for each other and for everyone else."
1 Thessalonians 3:12 (NIV)

Happy Valentine's Day to you all! Much love!
K

His "good" can be found in every "bad"...

2010-02-04T14:39:00.002-06:00

It's a long one, but when have I ever posted a "short one"!!! The past few days have been difficult. The reprieve I had from the noise sensitivity has gone and so I find myself, once again, having to wear headphones and ear plugs. In morning treatment it isn’t so bad because everyone else sleeps. In fact, most everyone should sleep when they’ve been given 50-100 mgs of IV Benadryl. However, I’ve never been like everyone else when it comes to medication. I have yet to sleep in treatment after almost 8 months here. So, the mornings are quiet and I can take my headphones off and that is a blessing. No matter how expensive or “comfortable” headphones may be, they were not meant to be worn for 6 hours a day. They give me headaches from the pressure they put on my head and face. It seems to be a situation of either having headaches from the headphones or headaches from the noise and neither is good. I have been blessed that the light sensitivity is not as bad as it once was. However, it too is coming back slowly.

This is what I referred to in my last post. This is a “herx” and I do hate it. The Babesia that we are targeting with the new IV antibiotic as well as with an oral “anti-malarial” drug is what causes most of these symptoms. It’s the one I talked about that tears my red blood cells causing me to not get enough oxygen to my brain. It’s the one that leads to seizures due to that lack of oxygen. The past few afternoon treatments I felt that scary “pre-seizure” feeling. I came home with migraine headaches and cried when I would have to go lay in my bedroom in the dark with a fan on loud enough to drown out even the smallest noises. I have not had a seizure, thank you GOD, but the precursors seem to be coming back. This is when the headphones, earplugs, etc. just cannot do enough. I had also been having a fever of around 100 each night by the time I left treatment. Having a 100 degree fever is not even considered a fever by most doctors’ standards, but when your normal body temp is right below 97 degrees, a 100 degrees feels like a fever of 101 or 102. I have found that by afternoon treatment my body has started hurting again. The bone and joint pain are bad but this time my spine hurts and that comes from the Bartonella I believe. I have “doctored” my treatment chairs with so much memory foam and yet I cannot get anywhere near comfortable.

The biggest issue for me is that by the afternoon session my brain is low on oxygen yet again. I have realized by now that I cannot talk during afternoon treatment or the headaches get worse. For those who know me, well, the idea of me not talking for 2+ hours is laughable. I started talking at an early age and if you ask my parents they might tell you I haven’t shut up since…haha. It’s true to an extent though. Even through this blog one can tell that if I type this much, well who knows how much I might actually say if I had someone sitting in front of me! So, again I have to find a “new normal” in this fight. This new normal would include me trying new things to keep my extremely talkative self from talking at all for those 2+ hours which will be so hard on me. My plan for now is to take my portable DVD player and plug in the “ear buds” and cover those with the headphones and just focus on some light and easy movie since my light sensitivity is not as bad as it once was. I don’t know if this plan will work but I’ve tried reading and on the medication I just lose focus and can’t comprehend as well. Plus, reading sometimes gives normal people headaches. I’ve been knitting some to try and focus on something else, but no one was surprised to find I could easily knit and talk at the same time haha. So, today I go with my “plan B” of watching a movie. We’ll see how it works out.

The good news is that I have had a 3 week rest from the seizures. This has allowed my body’s levels of carbon dioxide to come back to more normal levels. When I had 4 seizures in 8 days my levels were dropping and now they are back to a more normal level. My red blood cell count is low again but this is due to the Babesia tearing the red blood cells. It causes my over all blood levels to drop a bit, but thankfully not too low. God gave me time to allow my body to heal some from the horrible seizures that lasted for so long and were coming so frequently. Now I feel He is telling me to literally BE QUIET. Sometimes I think I talk so much, think so much, that I have a hard time hearing Him. I hear Him now though and He is telling me to hush, to rest my body, to try and conserve my oxygen so that I don’t have a seizure. I’m listening and trying my best to follow His instructions.

I did find that the fevers I have been having are due to an infection in my nose and throat. The doctor has prescribed a nasal spray that actually puts the antibiotic into your nostrils and sinus cavities. We hope that by starting this after treatment today I will fight off this infection and not have to deal with the aches and headaches that often accompany fevers. But guess what? I am thankful to actually have a fever. I know that sounds ridiculous, but fevers mean my immune system is actually trying to work WITH me. For 20+ years I have had all sorts of viral and bacterial infections and never run a fever. When I was in grade school my mom would have to force the pediatrician to run a strep test because she knew that’s what I had, but the doctor never thought I could have strep without a fever. Every time they ran the test he would have to see that I did have strep with absolutely NO fever. Fevers mean your white blood cells are trying to fight something. It’s like the alarm sounding in a firehouse and once those white blood cells hear the “alarm” of an infection they swarm out and it results in a fever. This is one of the many things I am referring to when I say His good can be found in every bad. God is good. God is slowly healing my overworked immune system and my lab results are showing improvement. It may take 6 months or so to rid myself of the Babesia but God’s plan for me is perfect, no matter if it includes fevers and seizures. He is with me in all ways, on all days and I am forever grateful to feel Him even when I might not think I’m “hearing” Him.

Some people may read this and say that it’s the medication working, that this is simply science, but that is just not true. My doctor even seems to me to be a bit stumped as to how much my labs have improved and I often feel it’s because the reason for why they are improving is not clear, scientifically speaking. I know why they are improving though. It’s because of God pure & simple. I know after much prayer He divinely led me to this doctor, to this clinic, and after much questioning and debate, my husband and I realized we had to follow where God seemed to be leading us. It has been a long and sometimes extremely hard road, but we knew and we still know that God led us here. It is HIM who will receive all the glory for my healing and improvement. I’m not saying medicine is not at all why I’m getting better, I am saying that God is using my doctor as His tool, that my doctor is not the healer but is His instrument for my healing. I know so much about medicine after the years of bad health I have endured that sometimes I think I should have an “honorary M.D.” so I know what kills infections, what blood tests show, what can be expected from each infection I encounter. However, I know without God I would never have made it through the past 7 and a half months, mentally or physically. God has chosen to put me “in the fire” so He can mold me into the person He has planned for me to become. I have no idea where all of this, these illnesses, this time away from my family and friends, this difficult road is leading me. I only know that I am praying that I am following HIS will and that the pathways I walk are ones He has ordained for me to walk on this earth. I have no doubt that He is my Great Physician, my true Healer, and definitely my Comforter. I want to get well, I want to be healthy, but more than any of that, I truly want to become the person God wants me to be.

So there you have it. I had been scared the last couple of days about “what ifs”. As in, “what if the seizures come back?” or, “what if I cannot get rid of the Babesia and have to endure months of seizures?” and those are understandable questions. I wouldn’t be human if I didn’t worry or question these things at times. Yet again, God made something clear to me yesterday. Before I met with the doctor He made me realize that stress is a big trigger for my seizures. Guess what asking all of those “what if’s” does? It stresses me out. I could stress myself into a seizure if I focused on all of the “what if’s” and I would only have myself to blame for that. Again, He made me see that He brought me through all of the seizures that came before and that He would be with me if they start again. There is nothing to be gained by worrying. I had to focus hard on the fact that God did NOT give us a spirit of fear! But oh how Satan can get in your head and make you doubt and question and scare yourself to death! I refuse to allow that to happen and I can do that only by relying solely on God and His love and protection. He has gotten me this far and if I put my full faith and trust in Him, He will continue to carry me through the rest of this journey.

This has been a long one. Sorry for always writing so much, but now you can truly see how I might just talk myself into an oxygen deprived state, huh? Haha. Just a bit more and I will be done! I pray that all of you are doing well. I pray that you all refuse to go out into the world every day with a “spirit of fear” – no matter what your fear is, God is greater than that fear. He only wants you to “cast all of your cares on Him”, follow where He leads you and He will work the rest out for you. Faith is not just believing in God – faith is “stepping out of the boat” just like Peter did when he asked Jesus if he could walk out onto the water. The moment Peter started to focus on the fear, the moment he took his eyes off of Jesus, that’s when he started to sink. That is still true with us in this day and age every single day. I have to constantly remind myself that I am not in control of any of this. I am simply meant to pray, and to pray hard, for God to make His will for that day, or sometimes just that moment, clear to me. I pray to Him to keep my eyes focused on Him, on His ways, on what He has already done in me and for me. I bet if you look around, no matter how bad your current situation is, you could find things to be thankful for. We all take so much for granted. I know I did and most days I still do. But I keep praying to see my blessings instead of focusing on what I perceive to be “the bad stuff” because He uses all those bad things, those bad times, for our good if we allow Him to. It’s about trust and faith. Those are hard things because we can only see with our “human eyes” and have no idea what God sees for us. Just pray every day that God will show you what to be thankful for, what blessings you do have in spite of what troubles may be in your life. It’s a choice and I have to choose every day to believe that God’s plan for me is a good plan, even if it includes some seizures. He is in control of all of it. I just have to thank Him for always being with me and oh, how thankful I am for that!

How odd is it that I just flipped my daily calendar to February 4th and found the following verse:
"The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid?" Psalm 27:1 (NRSV)

No coincidences there, none at all! Much love to you all!
K

Seek and ye shall find...

2010-01-30T10:20:00.002-06:00

I haven’t written in awhile, but for the first time it hasn’t been because I’ve been too busy having seizures. My sweet husband came up 2 weeks ago so that mom could go home for a week. Bless my mom’s heart but her week home that was supposed to be a “break from the stress” was stress in itself. My grandmother had a “mild heart attack” but at the age of 91 I just don’t think there is a “mild heart attack”. She was in the hospital almost the entire week. The night she was admitted one of my aunts passed out and had to be put in the bed next to my grandmother and be given IV fluids for 5 hours or so before being released. My other aunt came into town to help out and stayed with mom when she started not feeling so well and they checked her blood pressure and it was too high. So my mom took her to the ER and they administered some medication and she had to go back home to get a stress test & heart work up done with her doctor.

So, my sweet husband realized my sweet mother needed more time at home. He rearranged some things so that she could have until today (instead of last Monday) to come back. She was able to make sure my grandmother got back to her “assisted living facility” although for the next week or so they’ll have her in the real nursing home area to keep watch over her and make sure she gets the medication she needs. She’ll also be doing some therapy and hopefully will be back in her regular room very soon. I ask all of you to pray for my family as they have gone through so much in the past two weeks. I hate to have to depend on mom to come here and take care of me, but unfortunately I can’t take care of myself so it’s a necessity.

Now, good news for me so far is that the new antibiotic, Clindamycin, seems to be working well without giving me seizures. We had hoped that by killing off infections and changing antibiotics that my seizures wouldn’t be near as frequent and definitely not as severe. I can still expect a few as we continue to try and kill off the Babesia, but as long as they are every few weeks instead of a few every week then I think I’ll be able to handle that much better. Now, each antibiotic has its’ own side effects and none of them are great, but the Clindamycin is only causing frequent trips to the bathroom (trying to not give “too much info”) and it leaves an unpleasant taste in your mouth. That’s one of the weird things about PICC lines I think, that whatever goes into your line you can taste in your mouth. Weird, I know, but true and it isn’t a horrible taste so I’m good if I have a cough drop to cover it up.

Outside of being worried for my extended family, I personally have had a couple of good weeks relatively speaking. I am able to get on the computer and not get an instant headache which allows me to feel so much more connected to friends and family. My noise and light sensitivity are definitely still with me, but they are nowhere near as severe as they had been. I still have to wear my headphones and I have trouble if more than 1 person is trying to speak to me, but before even with earplugs and headphones I felt like an ice pick was being driven through my head. The pain was excrutiating whether it was from light or the slightest sounds. I hated it for me but even more so for those around me who tried so hard to keep their voices low, their motions quiet, etc. When you are so very sensitive it is hard to understand yourself and even harder to explain to others how throwing something in a trash can sounds like a bomb going off in your head. So, while I’m still sensitive to all that, it isn’t driving me insane anymore, or at least not any more insane than I was before.

I’ve been talking with God. I’ve been thanking Him everyday for keeping me seizure free and for granting me this respite, even if for a short while. This antibiotic will build up in my system and it will be killing off things like the Doxy was so there’s no question that I will “herx” on it (Herxheimer reaction – just means symptoms get a lot worse or you have symptoms that you didn’t have before due to toxin build up in your blood). The question is, just how bad will this “herx” be? So far I have noticed the joint pain being worse and feeling more exhausted but I feel those are things I can handle because, for right now, and this is a “moment to moment” type thing during this process, I feel better than I did when I got here in June. I can take pain, in fact I even passed a kidney stone last week and still went to treatment, and I can handle upset stomach and body aches and pain. It’s just how much of those and in what combination can I handle them? Only time will tell.

I said I’ve been talking to God, and I have. However for now, He seems to be keeping quiet and I don’t hear Him as clearly. Maybe I don’t need to hear Him as clearly as I did when I was in such bad shape. Maybe He moves away at times just to have us go in search of Him – to continually seek Him. I always seem to feel distant from Him right before I go through a state of spiritual growth. He may be waiting for me to come to Him when that herx finally hits. He may be letting me enjoy just a couple of weeks of semi-normal life. He may just be smiling down on me, knowing that I give Him all the praise and glory for ANY and ALL improvements where my health is concerned and definitely where my state of mind is concerned. I will say that He used my oldest niece to communicate with me this week. I guess I had been in the “poor pitiful me” state for awhile (before the antibiotic change) and I had been wondering why God led me to start this blog, if anyone was reading it, if it was really helping anyone. Then my niece made me a video. When she sent it to me I really expected a video of her or her sister dancing or singing. I expected something funny to lift my spirits, but I got so much more. I got to see why God led me to write this blog. I got to see that if the only person that my words touch is my niece who started high school this fall, who is about to go through those difficult teen years, if all of this was only to touch her heart and lead her closer to God, well, I would not consider my pain and suffering to be for nothing. In fact, I would consider them to be a price well worth paying for the reward of seeing this beautiful, smart and talented young lady learn to cling to God in both the good and bad times.

I asked her if it would be okay if I shared this video with you all and she said yes. In fact, she refused to take credit for her when I told her how much it touched me. She told me “something” pulled at her when she read my last entry and that she “knew that something was God”. She said she couldn’t take credit for the words she wrote in the beginning or how it came to be because God lead her to make it. Now, my friends, that is when my heart truly overflowed with love for Him and love for her and the love of knowing she “hears Him” in her life already. Thank you God for always working in our lives , for doing what we need instead of what we always want. Thank you for this 2 week break from seizures and horrible headaches. Thank you for all you have done so far and all I know you will continue to do in my life I if I continue to pray for YOUR will to be done. Thank you, Lord, for every good thing on this earth and thank you for using my beautiful niece to make me feel like what I am doing here is important on levels that I cannot and will probably never comprehend. In fact, maybe He has allowed me to “find” something after all of the “seeking” I’ve been doing the past 7-8 months. He just gave it to me in a different format than I expected, but aren’t His ways always so much better than ours? Seek and ye shall find. I have found so much through this, a much closer relationship with God, a better understanding for what “real love” is about, a daily reminder of all the sacrifices my husband and family are willing to make in order to get me healthy. I’ve found more than I ever dreamed I would, and I feel there will always be more to find if I continue to seek Him.
Here’s the video. Oh, and my name isn’t Kate. There’s a long story to how I got to be called “Aunt Kate” since it isn’t even a shortened version of my real name, but I’ll spare you the long story & just say that’s what they call me and I love to hear them say it.

http://www.youtube.com/watch?v=6gS3HyF30mI

Much love to you all and here's a few good scripture verses before I go:

“God has given us these times of joy.” Psalm 81:4 TLB

“Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up, do you not perceive it?” Isaiah 43:18-19 NIV

“What a wonderful God we have – he is the Father of our Lord Jesus Christ, the source of every mercy, and the one who so wonderfully comforts and strengthens us in our hardships and trials.” 2 Corinthians 1:3-4 TLB

Patience, Progress & Praising God

2010-01-18T11:41:00.003-06:00

Okay, so first I will say that the past two weeks were a nightmare. I had 4 seizures in 8 days. Last week I had 1 on Tuesday that lasted about an hour and a half and then had another the very next afternoon for 45 minutes. They were hard and they caused me to be really sore, but thank the Lord, no falls, bumps or bruises this time - YAY! However, I was getting so tired and honestly, so depressed about having to go through all of it. I was beginning to think that I would never see any progress and only continue to suffer. God got to me with His whispers every day though, telling me He was with me, telling me to have faith, telling me that He would be my Healer, my Comforter and He would fight when I was too tired to do so.

I cried one night wanting to quit all of this, pack up the car and head back home. I was angry about the seizures, about how 4 different anti-seizure drugs and 1 muscle relaxer were not keeping these seizures away. As soon as I had moaned (very loudly might I add) to my mom, I walked out onto the screened in porch and God hit me over the head with His wisdom. He convicted me of being ungrateful. I was being ungrateful because I wasn't "setting my mind on things above" (Col. 3:2). I prayed for a doctor who could tell me what I had and who could treat me and God lead me here to Kansas City to a doctor who could do just that. I never asked Him to make my healing easy, or to make me well super fast. So, I had to realize how my timeline was not going to be the same as God's perfect timing. I was going to have to be patient. He's also been telling me to give up control and let Him carry out His will as I hand my worries and fears over to Him. So I prayed. I prayed hard and I meditated on Him, just listening for Him to speak to my spirit. He did and I listened as He told me to cast ALL my cares on Him.

My doctor's meeting was yesterday and I prayed that God would give the doctor wisdom about the seizures, and everything else. I also prayed that He would take the worry from both my heart & M's heart as we went in to find out results of yet more and more blood work. He lifted that worry from us and we felt an odd sense of peace before the meeting when we normally would be anxious and nervous. Before we went I read to M the verses from my daily calendar. Saturday's verse was:

"Ask and it will be given to you, seek and you will find, knock and the door will be opened to you." Matthew 7:7 (NIV)

I thought, "WOW - I am asking God for peace and He is giving it to me!" Yesterday before the meeting I flipped the calendar again and read:

"I am with you and will protect you wherever you go." Genesis 28:15 (TLB)

I must say I teared up a little thinking about how God has been ever present with me as I have endured so many trials. I thought about how as the doctor had said the seizures could be triggered by such things as the television, the computer, and even talking on my cell phone. I felt stripped of all the things I normally would use to distract myself. I had NOTHING I could do until I realized God was using this time for me to realize I did have something to do - I had to meditate on His word and His promises. I did that as much as I could but I'm not perfect and I must say how much I missed my "lifeline" to the outside world...i.e. my computer! Don't worry about me writing this though because I have been on a 3 day break from treatment to allow my body to rest and so it doesn't bother me for now to be on here this short while.

Now, the good news!!! In my meeting we found out that I got rid of Rocky Mountain Spotted Fever - YAY!!! When I came here the doctor said I likely had it even though my tests were negative. Apparently in November some more biofilm broke out and I tested positive for it after 3 negative tests! Now it is gone and I can get off of my current IV antibiotic and change to one that will hit the Babesia which is the main cause of my seizures. This is the first really BIG progress I have made. Just by knocking that out my C4A test went from 4,400 (something) to 2, 400 (something). That is a test that basically just shows how overloaded your immune system is. Normal should be around 1,2oo so I still have a way to go but WOW what a difference it made in just 6 weeks! PRAISE THE LORD!!!!

So now my dear friends we can say THANK YOU to God for being my Healer! He is using my doctor as His tool for His healing!!! I still have a way to go but this progress makes me realize I need to continue have patience because God's timeline is not the same as ours! I continue to lean on Him and thank Him for every day I have to continue this fight, knowing He goes before me in all things!

Much love to you all and I thank you all for your prayers because they are being answered...slowly but surely God is answering each one of your prayers. Praise Him today for the good things He has surrounded you with - pray with THANKSGIVING my friends because we all have things we take for granted that we need to tell God THANK YOU for don't we?? :)

Groaning instead of gratitude...

2010-01-06T23:18:00.002-06:00

It's been a rough few weeks. I'm going to vent a little (hence the first part of the title) because sometimes it's when I "groan to God" that He shows me why I should change my attitude and then He has to show me HOW to change my attitude. I feel like I've learned a lot about keeping a positive attitude, but we all have those days (or weeks sometimes) when being positive seems like the last thing we can do - or even want to do. I think everyone can relate to the desire to "wallow" in their own misery thinking, "Why me?" or "Why now?" or just "WHY???". So, I pray that as I write out my own groans, my health update, etc. that God will show me yet again how to go through this battle with His joy in my heart and how to keep that joy flowing outward to others.

First, another seizure and this one was a hard one. Not that any of them are "easy" but this one lasted longer and was a bit harder to get through. I took some anti-seizure medication that melts in my mouth (getting into my blood stream faster) as soon as the tremors started, but it wasn't fast enough. After 20+ minutes of having the seizure go from tremors into a grand mal I took more of the "melt in your mouth" medication. I prayed out to God that I was thankful yet again that this all happened at the clinic, that I had sweet nurses taking care of me, that I have a wonderful friend in treatment, Stef, who sat by me praying and holding my hand when I wasn't shaking it everywhere. She prayed silently, but I felt it and I knew it. I have to pray out loud because it helps me to focus so that I don't lose consciousness. So, I told God that if it was His will for me to have this seizure, if there was something that He had in His plan, then I wanted to follow His will.

I think He did have it in His plan for me because for the first time I stayed in my own chair and the nurses were able to get my vitals towards the end of the seizure. They haven't been able to get that information before so I hope that it helps the doctor to have it. My blood pressure (which is normally around 90/60) was around 160/70 and my heart rate varied from 140 - 170 as I bucked and jerked around. I honestly think this time I looked like I was riding an invisible bull. My right arm kept violently circling over my head which was odd, but nothing about seizures are ever really "normal" I guess. My seizures seem to always start with my right hand and then go up that arm, to the head, down my body and then back up my body and the last thing to stop shaking is usually my right arm. Weird how they seem to have a pattern to them, but it seems to help me to know when they might be calming down. A few times my oxygen level would drop down into the upper 80s when my back would arch and my body just didn't want to breathe. I have to focus very hard to make myself get air. I pray, I find places on the wall to stare at and focus on, and most of all, when I can speak, I make jokes. Although I stutter a lot, I seem to get the jokes out okay.

I know it may sound odd that I joke, but talking helps me to keep myself breathing, focused, and it helps me to lighten the mood in my own mind. I feel that the devil will use whatever tools he has at his disposal to get into our brains and believe me, a seizure is like a big old party that he can use to make you think scary thoughts, angry thoughts, or just plain "mad at God" thoughts. Which is why I pray with prayers of thanksgiving. If you thank God for all the good things in the midst of an assault by the devil, well, the devil just cannot stand that. I also try not to ask God to stop things, but to give me the strength to endure whatever His will is for me at that moment. He always does. Yesterday we joked about what an amazing cardio workout a seizure is, how the tightening and relaxing of muscles can give you great abdominal muscles, etc. I don't like to see "worried faces" when I have a seizure. I like to see laughter and smiles because the more I sense someone worrying, the worse the seizure will get for me because I focus more on them than on how to get my brain under control. I've been sick a long time and learned that you have 2 options - you can laugh, or you can cry. That really pertains to life in general - come home to a leaky roof? Laugh or cry - your choice. Car breaks down in the rain and you have no idea how long the tow truck will take to arrive? Laugh or cry - always your choice.

Now, please understand that everyone has a "cry day" or one where they just cannot muster up the mindset for laughter. I'm the same way, but I learn more every day how to laugh when I really want to scream in frustration. I have said before how I KNOW I am here for a reason, God led me here for a reason, and I'm not sure what that reason is, but I feel that part of it is to try and be positive no matter how bad I may feel. But today, the day after the seizure, the day my body is so very sore and I have a bit of a fever - well, I was in a better mood having the seizure than I have been in today I think. Maybe because today would have marked two weeks from my last seizure. It seemed the "melt in my mouth" medicine that I take before and after each treatment session was working fairly well. It still is in a way, but my central nervous system is just so easily overloaded. The doctor talked to me on Monday and we are now thinking that the Babesia is not just tearing the red blood cells but it's building up toxins in my brain. I started a new supplement yesterday morning that helps the brain "detox" and will hopefully help keep my brain from holding onto those toxins.

Okay, so I am back into the swing of things with treatment after holiday breaks. I had almost 4 whole days off for Christmas and then 3 days off for New Year's. I realized how hard breaks are for me right now though. Thankfully when I am off the medicine my light and sound sensitivities are much less severe, but it just makes starting treatment again a little harder. I got to feel a bit like the "old me" - even though it was still the "tired, old me" - it was nice. The holiday breaks aren't the only breaks we've had though, unfortunately. We had 6 to 8 inches of snow on Christmas Eve. It sounds so beautiful and magical until you realize you are basically trapped in a small apartment with winds howling and snow blowing everywhere. I don't think I will ever feel the same when I hear Bing Crosby sing, "I'm dreaming of a white Christmas" - it definitely didn't make my days merry and bright - ha! The weather has been horrid here. I believe the highest temperature we've had since Christmas Eve has been 20 degrees. I'm getting adjusted to the cold finally though and I guess that's what happens in life - you can adjust to about anything. Then last Tuesday it snowed and treatments were cancelled on Wednesday. We tried to schedule a treatment for Sunday afternoon and honestly I cannot remember if we had to cancel that one too or not. We were supposed to have just one treatment on Monday, but due to all the inclimate weather cancellations, the doctor had us change to 2 treatments. One day I went outside and the temperature was honestly -1 below zero and wind chills were around -10 below or so.

It's been so cold and today it snowed again. The doctor scheduled an impromptu early afternoon session to keep people from having to drive home in the dark in what the forecasters called "blizzard like conditions". The wind coming with this storm is rough and since none of the snow has even melted due to the extremely cold temperatures, well, it's just blowing around like crazy! OH - I must give a HUGE thank you to a fellow treatment friend who lives in my apartment complex for giving me rides to treatment in his 4 wheel drive Hummer because mom would not be able to navigate these roads! He has been such a help for us and I'm not sure if I would have been able to go without him! Sedans are just not made for this kind of weather. Tomorrow we have a treatment session scheduled for 2:00 p.m., weather permitting. It's hard to be out of the swing of things and you can't help but feel like every missed day is one more day here.

So, seizures, weather hazards, general feeling like crap, still fighting the flu, etc., etc. I could whine a lot but I just realized that each thing I complained about actually had a good outcome in a sense. My seizure was really hard, but I stayed in my chair so no bad bruises or falls AND for the first time they were able to document my vital signs. The weather here has been horrible, but I have been blessed with a very caring friend who doesn't mind waiting an extra 30 minutes in the evenings for my 2 hour IV bag even though his is only a 1 and a half hour bag. So, again, God goes before me. This is only my "temporary life". I have to focus on that. I will get home and I will still be on oral treatments, but I should be feeling a good bit better than I was when I get to come home. Speaking of home - I hated to miss out on a very special day for a very close friend of mine. She had a little girl today and I think her little boy is probably one proud big brother. Mom and baby are doing well and I know Dad is thrilled as well. I cannot wait to see some pictures but I do hate missing out on seeing that newborn little girl in person and welcoming her to the world. Bad day to start out with, but God showed me once again He is with me, He is fighting for me, He is giving me strength, and even though I'm not at home to witness it, He is showing me His miraculous ways through my sweet friend's new baby. How can you deny God's presence or His existence when you see a newborn baby? It seems quite impossible to me that those tiny babies are anything short of miracles.

I feel better now. God does show me so much as I prattle on and on and you have to read these lengthy entries. He shows me He is still in control and that, my friends, is exactly what I want to hear.

To close a few verses:

"Be self-c0ntrolled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour." 1 Peter 5:8

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

"Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:4

"Submit yourselves, then, to God. Resist the devil and he will flee from you. Come near to God and he will come near to you." James 4:7-8

Much love to you all. I'm feeling much more gratitude and I think my groaning has ceased for now. I simply have to wake up and choose to ask God to be with me throughout the day, encouraging me, giving me strength and surrounding me with His love. Every day we have that choice and I think we should rejoice that God wants us to spend our days with Him always.
K

Pictures of pain and progress...

2009-12-26T21:10:00.007-06:00

I realized that I haven't put any pictures of lab results, etc. on here in awhile. So, I thought that I would show the good, the bad, the ugly of what it is I'm fighting.

Here goes: This is the fluorescent stain of my blood that was done in June showing an entire "biofilm community" in my blood. The other little dots are biofilm, but that big one has all sorts of bugs (as the doc calls them) in there so we went after that biofilm hard!

Now, here is the fluorescent stain of my blood done late November:

This shows smaller biofilm communities and is still considered "substantial biofilm" but is much smaller than what we saw in June. See, progress in pictures!

Now the next photos won't look like progress, but they do actually show progress in a backwards kind of way.

This picture is a special stain of my red blood cells taken in January of 2009:

They look somewhat normal for red blood cells. Red blood cells should be circular or somewhat round without rough edges. The yellow arrow in the picture is pointing to Bartonella that is in or around or attached to a red blood cell. Please understand that the Bartonella is hiding inside the biofilm so well that I am STILL testing negative for it in my blood work - even though we have a picture of it IN my red blood cells. Just goes to show how hard this stuff is to get rid of and to get out of your body.

Here is the same stain done this month:

As you can see the red blood cells don't look as circular. In fact, some are extremely jagged with spikes and all sorts of bad looking stuff. This is what the Babesia is doing to my red blood cells. It attacks them and tears them apart. I've explained how red blood cells carry oxygen all around your body and these torn little pieces aren't doing that. This is what causes the lack of oxygen to my brain and we think is what causes my seizures. What is the good news in all of that? Well, that we broke down enough biofilm to get the Babesia out so we can fight it. Now my tired body that is overwhelmed with Influenza A and Mono just can't take on Babesia very well right now. We have had to slow my treatment down immensely due to the seizures...a.k.a. my "speed bumps".

For now we are going to try just doing IV antibiotics in the morning and then IV fluids in the afternoon to help my body rid itself of the toxins. These torn red blood cells are also what are collecting in my spleen and making it swell a bit. So we want to flush my blood with fluids to get all of this out and hopefully keep my seizures at bay by doing that and adding that sublingual anti-seizure medication.

We'll just keep on praying and God will keep doing His work as He leads me and my doctor in our mutual decisions on what is best for my body. We cannot push right now, but we can plan for what comes next. We can try everything we know to keep the seizures from coming on, I can keep on forcing myself to stay conscious in order to stay out of any ERs or hospitals. When you lose consciousness, you have to go to the ER so they can make sure your respiratory system is working and that your brain is getting enough oxygen to keep everything working. God has yet to fail me - He is with me every step of the way, even when I often think I am making these decisions on my own. I'm not...He's just giving me ideas and I'm slow to recognize and thank Him for all He does.

Basically, these pictures show progress. Slow progress in some areas, painful progress in others, but progress nonetheless. So, the day after Christmas I thought I would share my Christmas gift of God's work in my body - His progress for me physically and His strength for me when I lack my own. He is at work in us everyday people, we just have to choose whether we listen to Him or tune Him out. I've been known to do both very well - really, haven't we all? I am trying to force myself to listen to that small quiet voice before He has to really YELL to get my attention. All I can say is that I am thankful for His grace, love, and forgiveness for all the times He has to YELL before I listen. You'd think I'd hear His whispers now that I'm so sound sensitive :)

Closing with a few really good quotes from some Christian authors and then of course, a couple of Bible verses that are on me right now:

"God walks with us...He scoops us up in His arms or simply sits with us in silent strength until we cannot avoid the awesome recognition that yes, even now, He is here." Gloria Gaither

"Regardless of the need, God comforts. He is the God of all comfort! That's His specialty." Charles R. Swindoll

"Trials have no value or intrinsic meaning in themselves. It's the way we respond to those trials that makes all the difference." Joni Eareckson Tada

"The Lord is near to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18

"Wealth and honor come from you; you are the ruler of all things. In your hands are strength and power to exalt and to give strength to all. Now, our God, we give you thanks, and praise your glorious name." 1 Chronicles 29:112-13

Hope you all have a wonderful week and a blessed New Year!!!

Love-
K

Dreaming of a white Christmas and home...

2009-12-25T15:41:00.005-06:00

A few positive things about spending Christmas away so far from home: 1) The new perspective you get about the true meaning of Christmas. I got to focus a little more on being forever grateful that God sent His son here to save us all from our sins. 2) I learned that Christmas presents are nice, but being with family and friends is the tradition I love a lot more than gifts. I love buying presents for the people I love, but I am thankful God has given me people who love me much more than any gift I could ever buy them. 3) And finally, the fact that I love my husband more and more with each passing year and the ways he shows me his love are much more important than a nice Christmas gift. It’s the day to day things he does, the way he takes care of me, that make me realize material gifts are never an indication of how much someone loves you.

Now, don’t get me wrong, I love presents as much as the next person, but this year I saw past the gifts to the most important part of Christmas – LOVE. First and foremost, God’s overwhelming love for us that resulted in His sending His son down to earth to endure so much to save us all from our sins. Then, God blessed us all with family, friends, or friends who feel like family who love us and stand by us no matter what we go through. God has blessed me with so much that I often feel like a spoiled child when I complain to Him about how I want to be healthy. I know many healthy people who are not as blessed as I feel every day. Of course I want to be healthy – it’s why I’m here. However, through all of this I have gone through a range of emotions – frustration, anger, excitement over the smallest of improvements, disappointment about lack of progress – the list goes on and on. The longer I am here, the more God works in my heart, and eventually my hard head gets the message. I am blessed with His love. His love that is greater than all the seizures, surgeries, sicknesses, and setbacks. He is with me through all of this, even when I don’t act like I should or say the things I should – His love is forgiving and perfect. I am so glad to know that I don’t have to be perfect to receive that truly amazing grace.

Now, I know I have written quite a few verses on Philippians on here somewhere (or at least my “Lyme brain” thinks I have) but I want to write a few that I may have written previously because God is hitting me over the head with these verse this morning and making me see them in a new light:

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable -- if anything is excellent or praiseworthy -- think about such things.” Philippians 4:4-8

Now I’ve read these verses so many times, as have many of you, I’m sure. However, today as I wrote the beginning section of this entry I realized God was doing so many of these things in my heart today. I will list them below in the order they occurred to me:

1) “Rejoice in the Lord always” – I started this by stating that I am so grateful for God’s love and grace so I am REJOICING in the Lord!!! Even 1,200 miles away from my “Christmas traditions” I am remembering that Christmas is ALL about REJOICING IN THE LORD!!!
2) “...with thanksgiving present your requests to God” – the next thing I wrote about was my thankfulness for my family, friends, my loving husband and how “things” pale in comparison to those things which cannot be bought – like love and friendship. So, I am THANKFUL and I present my requests to God knowing that while I may not have good health – I have a good life of love and laughter.
3) “Let your gentleness be evident to all.” – I have been having to think about many things lately: A) Changing my treatment protocol B) What I can do to ward off these seizures that seem to have no clear “triggers” C) How I should go about discussing changes like this with my doctor. In thinking on all of this for weeks I have often thought, “Should I be putting my foot down and demanding change or should I be the ‘good patient’ that I have been for the past 6 months?” I had been going to just quote Philippians 6-8 but as soon as I opened my Bible God laid it on my heart to include verses 4 and 5 and now I know why. Our actions, each and every one of them, are used to determine what kind of person we truly are. As a Christian, I think it’s counter-productive to stomp my feet and demand things to be done in a certain way. I know some of you are thinking, “This is your health, K, so start STOMPING YOUR FEET! Demand things of your doctor!” Hang on and I will address what God is telling me about that as well.
4) “The Lord is near.” – yet another part of this group of verses I had not planned on including. It comes directly after “Let your gentleness be evident to all.” and I think there’s a reason for that. I think it is a way of saying, “There’s no need for you to be stern, forceful, demanding because THE LORD, YOUR GOD, IS NEAR!”
5) “Do not be anxious about anything, but in prayer and petition, with thanksgiving, present your requests to God.” So, I’ve been worrying about all these issues with my health, how should I handle them, what should I do? The answer is right there – do NOT be anxious. That’s first. That comes from having faith and knowing that God’s sovereign plan has these things covered. Second you are to pray WITH THANKSGIVING – again, the first thing I did as I began this was to list all I have to be thankful for, all I have to thank God for every day. My life is far from perfect, but no one’s life is perfect and I should not expect perfection on this side of Heaven. I’ve learned if I state my “list of things to be thankful for” at the beginning of my prayer, my anxiety goes away before I can even get to my “petitions” or requests. It allows me to see what all God has already done for me, how many times He has already gone before me solving problems I never even recognized BEFORE I knew they were problems. Basically, this says, “Count your blessings first and then hand over those troubles to God, every single one of them.” Don’t just say you are giving them over to God, don’t just hand over your “big worries” and think you can handle the small ones on your own, or vice versa. I’ve said many times that I’ve handed a problem over to God and then found myself later worrying over the very things I “said” I was giving to God to take care of. When we really hand our troubles over to God we need not worry about them again. Again, “The Lord is near” so He knows your worries, your fears, your weaknesses. Doesn’t matter if you hand them over or not, He still knows every one of them. So why not just give them over to Him and thank Him for all He has done for you and all that you know He will do for you in the future?
6) “And the peace of God which transcends ALL understanding, will guard your hearts and your minds in Christ Jesus” (emphasis on ALL is my own doing) – I sometimes wonder about God’s level of patience with us human beings. Because so many times the Bible uses different stories, different accounts of the same story, parables, etc. to get the SAME message to us over and over again. I’m stubborn, I’m hard-headed, I think I am right most of them time, but honestly, how many times does it take for me to understand and trust that God will take care of me in every way? He has done nothing but show me that even in the worst of times He is with me, He holds my right hand, He counts my every tear, He feels my pain, so why do I continue to try and tackle things without going to him “by prayer and petition, with thanksgiving”??? Because I’m human and He’s God and I am very thankful His forgiveness is so much more than we can comprehend. We cannot even understand a fraction of that type of forgiveness because as humans we are incapable of it. It’s that simple. So, be thankful that once you confess your sins, once you have humbled yourself before God and asked Him for forgiveness, He gives it to you immediately.
7) “Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things.” So here we have it again. God wants us to rejoice in Him. He wants us to allow everyone to see our gentleness. He wants us to know He is near. He does not want us to be anxious, but rather He wants us to come to Him with a heart of thanks and hand over our troubles to Him. After we do that He will grant us the peace He has and will guard our hearts and minds in Christ Jesus. Then, because we humans don’t listen well or pay attention to much of anything for long, He drives the point home by making it as simple as telling us to “THINK ABOUT THINGS THAT ARE TRUE, NOBLE, RIGHT, PURE, LOVELY, ADMIRABLE, EXCELLENT, AND PRAISEWORTHY”. Do you see what I see here? How on earth can we worry or be anxious if our minds are concentrated on GOOD THINGS??? How can we not allow our gentleness to be evident to all if we always concentrate our thoughts on GOOD THINGS? How can we not be thankful to God for all He has done, instead of always finding things we think He “should have done”, if we are always focused on true, noble, right, pure, lovely, admirable, excellent and praiseworthy things???

That’s my take on it. That’s what God laid on my heart to write. It was not anything I intended to write. It wasn’t even close to what I intended to write. It was not even on my radar, so to speak. But, I prayed when I started this blog that God would lead me in everything I wrote on here, that He would use me in some way to bring His glory, love and peace to anyone who might read this. It came through my hands though so forgive any misspellings, typing errors, etc. I do my best but sometimes my hands can’t keep up with the thoughts God places on my heart.

Now, here’s the health update. M was able to be at the doctor appointment we had on Sunday afternoon. He is the husband, he is the provider, he feels the need to protect me, love me and take care of me, and he is a true man. I mean that in the best possible way, but men often want to just “get down to brass tacks” so to speak. He wants to know the “big picture” idea. What do we do now to get the seizures under control (I’ve had 2 more since my last post)? He needs to know this because we cannot push my body any further with the medications without getting the seizures under control. These seizures are fairly big speed bumps on my road to getting home. Finally, he asked that question that I have not wanted to ask – the one about WHEN the doc thinks I will be able to get on oral meds and come home? It’s not that I didn’t want to know when I could come home, it’s that I know after a couple of decades of declining health, that there is no way to tell how my body will respond to the different treatments, medications, etc. Also, there’s the biofilm issue, meaning every time we open more biofilm we have no idea what will be released into my body. I guess sometimes opening biofilm is akin to opening Pandora’s box with possibilities of new illnesses coming out that we haven’t thought of or that I have been tested for and gotten negative results. The answer was what I told M it would be – just a guesstimate. The doc's “guesstimate” is 6-9 more months and it was said that “every cell in her body is diseased”. And the guesstimate is based on if my body finally stops fighting against me and starts fighting WITH me. In the past 6 months my body has shown no signs of wanting to cooperate with us in our quest for health. I almost feel like my immune system is mugging me at gun point every day – stealing all I have, beating me up, and leaving me for dead. Don’t know where that analogy came from, but it seems fairly accurate since the seizures do beat me up quite a bit and my body is so very tired.

Bright side, yes there is some good news, the latest biofilm stain showed smaller biofilm communities so the blood work confirms what we knew was happening – we are breaking down that biofilm and getting these infections (bacterial and viral) to come to the surface where the drugs can knock them out. We are making progress. One of my treatment friends, Stef, recently reminded me that “slow and steady wins the race” and she is right in this case. I cannot push my body harder, I cannot fight any harder than I already am, but it is nice to see a picture of some progress. The other picture we looked at was a stain of my red blood cells. The first one I had done was last January and it showed Bartonella attached to blood cells but nothing in the blood cells. The doc says that’s because the blood cells were hiding in biofilm we couldn’t see. For those non-medical folks, your red blood cells should be round, circular, whatever and have smooth round edges. Most of mine looked that way last time. This time however, they were spiky, misshapen, stacked onto one another – basically it looked as if someone had taken a chainsaw to them and split them apart haphazardly. The doc says this is due to the Babesia (the horrid illness behind my seizures) and it shows exactly what we thought it would show – damage to the red blood cells. Red blood cells carry oxygen to the brain – and everywhere else in the body – and the Babesia is attacking my red blood cells and tearing them apart. This causes a few problems, as one would expect. First, the lack of oxygen to the brain leads to the seizures. Second is that killing the Babesia leads to toxins in the blood that cause me to have extreme headaches and I think they also cause my extreme noise and light sensitivity. I literally wear sunglasses the bathroom due to the bright lights and I hurry out as soon as I flush the toilet and quickly shut the door because the simple sound of the toilet flushing kills my ears. I cover my ears a lot these days and feel that I look like a little kid who doesn’t want to hear the word “no”! Finally, the red blood cells that die off have to go through the spleen and I’m overloaded with them so my spleen is swollen and hurts. Not a bad pain, but I do compare most pain to kidney stones, so who knows what “bad” is. My bad pain could be someone else’s “good” or it could be someone else’s “horrible”. It’s all subjective. Main point is that there isn’t much we can do for it beside keep me off my feet (okay I’m laughing as I type this because those of you who know me know I haven’t been ON my feet for quite a few years – haha).

We did try to move me to a “private treatment room” to cut down on noise, but unfortunately most patients in the private rooms are in there because they have to be in a bed, or in a wheelchair, or have more extreme physical problems than me. At least, that’s what I’m assuming because both times I tried treatment in there it was louder than where I was previously. It was a bad idea to try it. I knew that, but M thought it would force me to rest some more than I do when I get to chat with my treatment friends and the doc has been suggesting it for a few months. Needless to say, I will not be in there again. The very first time in there I had a grand mal seizure that started around 5:25 and we were able to leave around 6:15 – but my sweet nurses stayed late with me, bless their hearts! We had adjusted my seizure meds since I don’t do well with pills due to absorption issues. So, we got it in a sublingual form (just means it melts between your cheek and gum) which is the fastest way to get it into your blood stream outside of injecting it into your IV. Even though the medication melted as I walked into treatment around 3:10 it wasn’t enough to keep me from seizing. I’ve found that change in my environment is very hard on me as well. Sounds odd, but the days that mom leaves and M comes in are hard on me because it is a change. When we had another girl put in my treatment room, she knew I had seizures and was being so quiet as to not set them off, but I still seized. Not her fault at all, but I think it was just the change that caused it. Change apparently equals stress and stress seems to equal seizures. We’ll continue to work on it and I will continue to fight every day with the strength that God gives me as I pray to Him for wisdom, fortitude, a loving attitude, sympathy for others who are fighting these diseases as I am, but who have different symptoms, pain, exhaustion, heart trouble, etc. I also pray that this blog gets out a message of God’s everlasting love and that it allows people to know about a disease that no one seems to know about and that several doctors refuse to believe in.

I’m blessed to be here. I hate being away from home, but God led me here and here I will stay until He leads me on back to Birmingham or anywhere else He feels I should be. Thanks again for reading a short story. It’s hard to write these. I’m not supposed to be on the computer, but it’s Christmas and I wanted to post what God put on my heart to post. I just wish He would edit it for me too…heehee. Merry Christmas my dear friends!

“She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.” Matthew 1:21

Much love to you all!
K

Aches of a different kind...

2009-12-14T01:30:00.004-06:00

I had a rough week, but I’ll tell you all about that later. Right now I want to tell you about aches of a different kind. Most people think that when you come to a clinic like this, when you are doing IV treatments twice a day, when you feel so bad, that it would only be natural to want to go home as soon as possible. At first, you do. You start to count down days, or how many IV bags you have gone through, but then there is the realization that you are sick enough to need IV treatment. There is also the routine of coming twice every day and being surrounded by nurses who care for you, by people who become not just friends, but “war buddies” because you are fighting together. When you have to be here for awhile, the idea of going home can be very scary. You start to wonder, “What if I start to feel as bad as I did before treatment?” That thought is even stronger for those who came here from many states away. The idea of not being able to have that kind of routine and having to take our medicine orally instead of intravenously is a scary one. The fact that when we leave here most all of us are still going to be on oral medication and the side effects from that are often just as bad as the side effects of the IV treatments. If you are really sick and have been in the clinic a long time, you have the worry of being “on the outside” because at the clinic no one looks at you funny for wearing sunglasses indoors, or even at night for that matter. No one in the clinic thinks twice about those of us who wear headphones or earplugs, or both, because of our intense sound sensitivity. A phrase me and some of my IV friends use is, “We have found our people” and it’s true. Not just because we finally found a doctor who could figure out what was wrong with us, or the sweet nurses who understand our symptoms, but “our people” are really our fellow patients.

In the next two weeks I will have an ache of a different kind as two more of “my people” will be leaving IV treatment. I am so happy for them, but I understand also the fears that I listed above. I want to talk about these people and ask that you pray specifically for them as they journey into a world where most people have no idea about Lyme Disease or it’s many co-infections, like Bartonella, Babesia, etc. It’s a wonderful thing to know that they have gotten healthy enough to not need IV treatment, but that’s not really the same kind of “healthy” the outside world thinks of. It’s healthy enough to be able to continue treatment at home on oral medications. So I want to write first about these two people so that you might feel that you know them as you pray for them specifically on their road to “wellness”.

First I want to tell you about Julia because she was in my treatment room for the first 5 months or so that I was here. She has been here for a very long time and finally had to be moved into a private treatment room due to her sound and light sensitivities. They cause her to have horrible headaches and even the slightest noise – ones that some of you might not even notice or hear – will sound like the noise of a construction site to her ears. She is a beautiful girl and on the days when she has enough energy, which unfortunately don’t come around as often as she’d like, she will put on makeup and you wouldn’t believe how talented she is with makeup! She is beautiful without it, but I love to see when she has had a “feel good enough day” to put it on because she could honestly be a makeup artist right now without training! She is going home finally, but I want you all to pray that God gives her peace about leaving her “safe place” here at the clinic. She is a Christian and she knows God, but she has been through so much health wise that sometimes I think it may be hard for her to trust in the fact that God has great plans for her life. She is almost 20 and I know a lot of people that age have difficulty trusting or understanding what God may have in store for them. However, with all she has been through I pray, and I ask you all to pray, that she feels God’s love and protection around her as she goes home. I pray that she finds out what God has called her to do in her life, what He has prepared her for. She is special, she is talented, and unfortunately she had to spend a lot of time just being sick, which means that being special and talented had to take a back seat to just being sick. Pray that she will see how strong she really is. It takes a lot of mental strength to be here so long and it definitely takes strength to have suffered for so long. The Bible says “…we rejoice sufferings because we know that suffering produces perseverance, perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” (Romans 5:3-5). Personally, I trust that God has a lot in store for Julia. I hope we all (you readers included) learn from all our sufferings, whether they are health related or come in some other form. I will have an ache when Julia leaves, because I have prayed for her many times and have been able to see her change and grow, becoming her own person. I pray she continues to see all she has to offer the world as she grows and that she will feel God leading her in her every step. She is capable of doing so many wonderful things. She hasn’t even realized many of her God given talents yet, but I have faith that she will. She will go out into the world and her family and friends will support her as she continues to strive for a “healthy life”. Julia, I will miss your laughing with us when you were having a good day. I know your family will be happy to hear that laugh when you are finally home with them.

The other ache I will have is when Ray will leave right before Christmas. In my estimation, Ray is the guy who will always beat the odds, mainly because he would never recognize if any were stacked against him! He was on oral treatment for 2 and a half years before coming here. However, he did this while not only attending college, but being active in his fraternity, being Student Body President, and having a wonderful girlfriend! They just celebrated their 4 year anniversary and I know how special she is because she has been standing by him through this battle the entire time. Ray didn’t have to go through IV treatment long. He graduated college (on time…see how I think he beats the odds?) and decided to go through the IV treatment to get as healthy as possible before trying to head out into the “real world” and find a job. Even though he had those years of oral treatment, he had some really tough days on IVs but he pushed through and continued having such a positive attitude. He brings a light with him everywhere he goes, and I'm thankful for him bringing that light into our room with his quick wit and infectious good humor. Ray didn’t have to stay here as long as Julia, but he has endured a lot on his quest for good health. I pray that Ray goes out into this world and recieves all the wonderful things that God has in store for him. Unfortunately, he is going out in "the real world" during a bad economy when jobs are hard to find. I don't think this will stop him though because I have a hard time thinking that some prospective employer couldn’t be swayed to hire a guy like Ray. I honestly don’t think there’s ever been someone who met Ray and didn’t like him. If so, they must have not been around him long enough! Pray for his health to continue to improve as he leaves IVs and “his people” and goes out to live the life God has planned out for him. Ray, I know I will miss hearing you say “Yahtzee” any time your chair broke, or your computer cord got in the way of your IV pole. I still anticipate a CD dance mix for me to use when I have a seizure. See, this is a guy who understands that without music seizures just look weird, isn’t that right Ray?

I wrote so much about these two people because they are both so very special to me. Both of them have had to see me go through seizures and they both sat and prayed for me while I did my “break-dance moves”. They have seen me have some of my worst days and wanted to try and help, but it’s hard to help me when I seize because my dance moves often involve kicking and flailing my arms about. In those times it’s best to leave it to the nurses and just sit and pray – which they did. These are people who have hugged me at times when I just needed to know someone cared.

The last person I want to write about is my friend, S, and I know she won’t care if I write her full name, Suzanne. I wrote about when she left last month, I wrote about what a wonderful friend she had been, what a talented artist she is, about how she somehow made going to treatment fun – which is a quite a feat. What I didn’t do was to ask that you all pray for her as I have asked that you pray for Ray and Julia. Suzanne is at home now taking some very strong oral antibiotics that have side effects most people couldn’t tolerate. Suzanne is a trooper and in her 8 months of IV treatments, she never missed one treatment session. I guess I didn’t think to ask you all to pray for her because Suzanne has such a strong attitude and presence. However, I think Suzanne, like most of us, fails to see all of her wonderful qualities. So I pray that she will start to see herself, not just as I see her, but as God sees her. I personally think He would see her a lot like I do: extremely generous, eager to help anyone, brilliant, talented, and having suffered much, as many Lyme patients do. I believe he will use the suffering, the generosity, the brilliant artistic mind and He will lead her to do great things. Suzanne, I would say how much I miss you already, but you never read my blog because you’ve heard me talk too much already, haha! If you do read this, know that treatments just aren’t the same without you.

As for my own health update, I had another seizure on Monday and it was a bad one. I made the decision to only do afternoon treatment sessions for awhile. My reasons were 1) the seizure caused me to hit my fanny pretty hard on the tile floor which produced a couple of large knots (but no worries, we got the x-rays done on Friday and are waiting to hear that my fanny didn’t suffer any permanent damage), 2) A really sore fanny doesn’t go well with sitting in my IV chair for 2+ hours twice a day, and 3) my body is really tired from all the seizures and I thought perhaps twice daily treatment is pushing my body further than it can go at this time. Some people around the clinic may believe that my break from morning treatments is due to the fact that it actually got down to 1 degree on Wednesday morning with a wind chill of 16 degrees below zero and that this Alabama girl can’t handle such cold. I know I can handle cold – I skied at Lake Tahoe years ago during a New Year’s vacation, I’ve been to Colorado when the snow fell as early as October 1st. So, it’s not that I can’t handle cold. I’ll admit I don’t like it, but to those people who think I can’t handle it, I would say come to Alabama and realize that you don’t have to live in such cold conditions! Hahaha.

I wrote all of the above before afternoon treatment and unfortunately we had to leave the house early because I felt a seizure coming on. God was once again with me because you all know how I've never wanted mom or M to see me in full seizure mode. On Sunday afternoons the nurses usually don’t arrive until right at 3:00 and the clinic is closed until that time since patients don't arrive until 3:15 at the earliest. However, we got there right at 2:48 and God made sure the door was open and that two of my sweet nurses were there, both of whom have been with me during previous seizures. I got a shot of Valium right before 3:00 and by 3:30 I was able to be taken to my seizure cot via a nice wheelchair ride. The nurses were in the other treatment room of the clinic and luckily I was able to have my seizure in an empty IV chair that leaned back so I don’t think I sustained as many bruises. I was still seizing some when I got on my cot, though not as violently by any means. It was a better seizure than most, but unfortunately during the last two seizures I haven’t been able to control my bladder muscles and have had to endure wetting my pants a little. Luckily the first time I was wearing jeans with cotton leggings underneath (told you it’s been cold here) and this kept me from having the embarrassing “pee-pee mark” on my jeans. Today I was wearing just black leggings and you couldn't really see the evidence of my “accident”.

M is coming in on Thursday and we meet with my IV doc on Sunday, the 20th. Please pray that God will speak through us and that He will give the doctor the ears to hear our concerns about my treatment. As a husband, M is so supportive and when his wife has to suffer through so many seizures, well, he is a man who wants some answers. He wants to know what the doctor can do to keep me from going through these dangerous episodes. I'm now on 2 "anti-seizure drugs" as well as my Ativan and Valium which are in the benzodiazepam family of drugs and are often used to control seizures as well. I'm on a muscle relaxer as well, and yet I still seize. I will go into more detail about all of this after we meet with the doctor because for now, we aren't sure what is triggering these seizures, although we believe we might know why I'm having them. Good news is that M will be able to stay with me through Christmas. Unfortunately he will have to be home for business reasons the last few days of ’09 so there will be no New Year’s kiss this year. I’m not happy about it, but then I realized that last year I had to wake him up to get my first kiss of the New Year…ha!

Thanks for reading another one of my short stories – I can’t call these entries really when they reach this length! I hope you will pray for Julia, Ray and Suzanne, and as always pray for the other patients still going through IV treatment. I know you are all praying for me because God allows me to feel those prayers every day. I appreciate all of your support and am amazed by people who send me cards many of them are people I haven’t even met – like my in-laws friends at church and other Lyme patients whom I’ve only met through this blog or through people who have been through IV treatment here. Even family members on my dad’s side that live far away and whom I haven’t seen in years have sent such sweet cards letting me know they are praying for me. I’m still just amazed that so many people even read my blog. I pray that I write what God wants to say and that this is more than just a “health update blog” because I feel that God’s always meant for more to come from this than just a mere journal of my time here. I send much love to you all. OH – I forgot to say I got rid of the Coxsackie virus – YAY ME!!! However, the flu and mono are still being pretty stubborn and are probably co-contributors to my seizures. My own personal prayer request is that these seizures will stop so that I don’t have to “break-dance” or do “extreme cardio Pilates” anymore. Like I said, this body is tired. Pray that God gives my IV doctor and my neurologist the knowledge needed to help me fight my own battles as I travel down this difficult road to better health.

I pray that God bestows His love and blessings on each and every one of you!

It's not short, but it's about giving thanks and Christmas wishes...

2009-11-29T17:10:00.003-06:00

I have had a better break this time than the others. I think it’s because I had 4 days of just IV fluids instead of antibiotics before the break. Also, this break I did Heparin (blood thinner) injections instead of these gel like cubes of Heparin that you stick between your cheek and gum to melt. Heparin can only be properly absorbed subcutaneously (i.e. injected right under the skin or melted in your mouth). Anyway, with all the seizures I have had I wanted to make sure that the medication that helps get oxygen to my brain was going to be absorbed properly into my body! Even if it meant three shots a day in my thighs!

M came on Tuesday and I had my last treatment Wednesday morning before everyone headed off for their Thanksgiving festivities. Some families at the clinic are like me and cannot go home, or home is too far away which means an expensive plane ride. Many of them live in the same apartment complex and they got together and made a Thanksgiving meal and served it in the apartment clubhouse. However, I was still a little worried that all the people, lights and sound would send me into a seizure. Good thing for M is that Whole Foods had a pre-roasted turkey, dressing and veggies he could bring home. He had to put the turkey in the oven for 2 hours on Thanksgiving day, but he was able to have his Thanksgiving feast – gravy included!

As the days have gone by I have noticed a marked difference in my light and sound sensitivity. I am not walking around with ear plugs and headphones on and I actually have TWO lights on in my room right now. I can handle the computer light much better as well. As happy as I am about that, I am also sad because tomorrow I will start the IV antibiotics again and Tuesday we are going to try the Mepron again at a smaller dose and I’ll take it every 5 days instead of 4. I pray this means my seizures will not reappear, but I’m not going to focus on that part. I’m trying hard to leave that all up to God.

I have been here almost 6 months (December 16th will be exactly 6 months) and I was hoping for much more progress than I have had. Of course, with the emergency surgery, digestive and malabsorption issues, and the fact that I am battling some viruses that have been in my system close to 30 years, I guess I should not have been expecting much. My doctor came to talk to me Wednesday morning and is hoping that all the tests the neurologist is doing will let us know if my seizures are a side effect from the Babesia or if something more is going on. My personal wish is that whatever is causing the seizures is fixable, be it lowering the medication to fight the Babesia or if something shows up on my MRI, EEG, or sleep study. However, I know that God will see me through whatever heads my way.

Honestly, I think I’ve been a little mad about all of this lately. I haven’t seemed to have my “bright side” locator turned on. When I saw my doctor Wednesday she was coming to tell me that the reason we have yet to be able to really work on getting my immune system in order is due to the fact that we haven’t been able to get rid of the viruses that I have. After 6 months I still have active mono, active Influenza A, and Influenza B has come back. Basically, I have been breaking down biofilm, which is GOOD, but all that’s happening is that I am setting more things loose on my already overloaded immune system. Until we can get rid of the viruses, the larger battles – like the Bartonella and Lyme – have to wait a bit. Although I say I have felt better on this break, that is a relative term. My better is basically being able to handle the sound of a door shutting, or light coming through the window, and having the strength to walk into the living room. It’s hard to understand that kind of “better” but it’s like when I was at home having my “good days” and “bad days” except for the fact that now I have the Heparin which allows me to speak without stuttering, to think clearer, and for my heart to not have to work as hard. So, 6 months in and I still am battling the flu and mono. We have a new plan of attack for the flu and we’re hoping that mono will leave once the flu does. I’ve found mono to be very “opportunistic” in the fact that it always “goes active” when I have another active virus. We’ll see what happens when we attack the flu with our new plan.

Now, to giving thanks – I’ve got some bad things going on in my life but I have MUCH more to be thankful for and it took me a few “poor, pitiful me” days to be able to recognize that fact. I have a wonderful husband who has been so good to adapt at helping to flush my PICC line with saline “flushes” and getting my PICC line wrapped up nicely. He has adapted to watching (and sometimes reminding me) to inject my Heparin and has been there for me when I felt faint because I forgot to inject the Heparin hours before as I should have. He brings me my meals in the bed and does everything he possibly can to make his time here enjoyable and productive (going to the store, getting my car washed, etc.). God answered my prayer for a wonderful, Christian man to be my husband who would love me despite my many short-comings – both physical AND mental – hahaha. Honestly, in that area I don’t think I could have found someone more patient and more loving than my sweet M. He also has an excellent sarcastic sense of humor that cuts through my “poor me” stages fairly well by making me laugh at him, or the dog, or mainly helping me find humor in the things that don’t seem very funny at first. So thank you God for NOT answering some of my previous prayers regarding different relationships when I was younger because You knew the exact man I would need to spend my life with. Your plans are always the right ones but we often get impatient and try to work things out on our own and often end up with disastrous results!

I also have a wonderful family who has been so very supportive throughout this process. A mother who comes and spends weeks on end taking care of me and letting me know that she will “always be my mother” no matter how old I get! My father who worries from 1,200 miles away because someone has to stay behind and take care of the house, the dogs, and sometimes my wonderful nieces when they get sick and my sweet sister just can’t take off of work. Speaking of that sister – I thank her for always knowing when I need to laugh and being so good at making me laugh, but also knowing when I need to just be alone with my thoughts. It’s during those times that she sends some of the best cards. Then those nieces I mentioned who have sent sweet cards and constantly pray for me to be able to get well and come home. They let me know how missed I am but they also seem to understand how important all of this is. I know they miss their “Nana” while she is up here with me, but I thank them for that sweet sacrifice of not having Nana for awhile. I have wonderful in-laws who pray diligently and send me sweet gifts and whose church friends have sent so many cards letting me know how much I’m being prayed for! Also a wonderful brother-in-law & sister-in-law & 2 more wonderful nieces that pray and even sent me wonderful homemade lip balms and soaps! If I went into detail about my wonderful extended family –my sweet aunts, uncles, cousins, etc. Well, let’s just say I could write a book on how many uplifting cards and more importantly, how many prayers they say on a daily basis. I hope you all know how very loved I feel even if I haven’t been able to keep up with writing thank you notes.

I have written on here before about how I feel as though I have “lost friends” during this process and I know I have, but God has replaced each one with another person who is full of His love and showers me with His blessings through emails, messages, cards, gifts – the list is endless and I cannot begin to explain how very amazing His timing is on these things. The very day I feel overlooked or ignored, He makes sure He has someone send me something or email me a loving message so that I can never once say that I had to go through this without friends. I think that’s the strangest thing about having Lyme (and its many co-infections) is that God works through this disease like no other I’ve ever seen. Perhaps it’s because no one understands Lyme until it hits someone they know. The general population has NO CLUE what havoc a small tick bite can cause and the medical community has basically shunned anyone who believes Chronic Lyme (or late stage Lyme) exists. Therefore, those of us who battle this deadly disease (and yes, it is deadly – especially once it “gets into” your brain and your heart) must stand together and help one another in ways that might not be so necessary if this disease was understood or accepted by the medical community. I have found so many friends here in the clinic who understand what being sick for years is like, who know the pain of friends or family thinking they were “hypochondriacs”, who have spent untold amounts of money in pursuit of what so many people take for granted – GOOD HEALTH.

I was not able to go home for Thanksgiving and I won’t be home for Christmas either which really makes me sad. The idea of not seeing my family or Mark’s family for Christmas is just hard to fathom. It would be my first Christmas away from my family and I was getting a bit “Bah Humbug” about it all. Then, just now, as I typed that thought, God does what He often does as I type. He showed me just how stupid I was being and how stupid that very thought was. He is making me think about how the whole point of Christmas gets overlooked most every year as we all go in search of the “perfect gift” or the “perfect tree” or the “perfect meal” to serve at holiday parties. God is letting me see just how much the devil LOVES to keep us preoccupied with all these “necessities” so we don’t even think about what we are celebrating, or rather WHO we are celebrating. We are celebrating the birth of Christ. We are celebrating the best gift anyone ever could receive – God’s gift to us of His only son. The gift of Jesus, who came down to earth to walk among us and then was sacrificed so that He might carry our burden of sin away and show us all that God loves us with an unconditional love. We don’t have to “earn our way” to heaven – in fact, we simply CANNOT earn it. All of this, the whole reason Christmas exists in the first place, is so often put in the back of my head (and maybe yours too?) that it is only thought of when we see a nativity scene or head to church to see kids in a Christmas pageant or hear the choir sing beautiful carols.

Before I started typing this entry I thought I’d decided to not even get a Christmas tree or any decorations at all because this is not my HOME, and I didn’t want to remind myself of all the fun I would be missing out on from being away from my family and friends. Guess what – God made me realize that of all the people I know, I should be the first one in line to get a Christmas tree and a nativity scene. They won’t be big or showy or even expensive, but God is making me realize how very human I still am in all of this. I was going to “try and forget Christmas” so I wouldn’t be sad about missing out in so many traditions. TALK ABOUT MISSING THE POINT!!! God has done so much for me and I was going to “ignore” the celebration of the birth of His son????? God has always been working in my life – I just haven’t always been as aware of it as I have been this past year. I am so very thankful to Him for never leaving my side, for giving me strength I would never have without Him, for allowing me to discern what His will for me is in some of this journey. I will never know all of God’s will, but I pray to discern what He wants me to do during this time. I have found He has no bigger plans for me than to just spread His love as often as I can to as many people as I can. Whether that means I talk about Him to someone in the clinic, or they hear me pray to Him with prayers of thanksgiving during an awful seizure and think about what they have to be thankful for, or if it simply means trying to write a lengthy blog that praises His name as often as I can. I meant for this to be short – don’t I always make that mistake??? Good thing I don’t have an “editor” – haha. However, as usual, I started to type and God began to show me what I was doing wrong and how I could do it “right”. So, I am going to use this “last day of freedom” from some of my noise & light sensitivity and do something that might seem stupid. I am going to try to go to Target and get a small Christmas tree and a nativity scene. I am praying now that I can make it through the trip. I know I could send M, but God has laid this on MY heart and I know that if He wants me to do something, He gives me the strength to do it! I pray for that strength today and as I start off on another round of IV treatments tomorrow at 12:30 and then Tuesday we will all be back to the grind with our twice daily treatments.

I pray that every person reading this remembers why we have Christmas trees, or presents, or sing carols. It is in remembrance of God’s greatest gift – the greatest gift we could ever hope to receive – His son, Jesus Christ.

Thanks for sticking through another rambling entry as I type and allow God to lead me (sometimes the long way around) to what He wants me to write. Lengthy though it may be, it shows just how He works as I write.

“She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.” Matthew 1:21

“And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, ‘Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: you will find a baby wrapped in clothes and lying in a manger. Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
‘Glory to God in the highest, and on earth peace to men on whom His favor rests.'" Luke 2:8-14

P.S. I waited to post this until after my shopping trip so I could be certain that God did want me to go out and get some decorations for His son’s birthday! Guess what???? I went to Target, Pottery Barn and Crate & Barrel all within 2 hours and am only lacking a good nativity scene & tree topper, which I bet I can find on Amazon. God laid something on my heart and He gave me the energy and the best husband, M, to help me get it done. We should never worry about tomorrow and when we think we “know what we should do” but aren’t sure about how to do it – just go to HIM in prayer. God answers prayers both big and small. Thank you, Lord, for once again showing me where I was going wrong in my thinking process and for steering me back onto the right path. I continue to learn every day that I am more human and more prone to error than I like to admit, but it’s in the admissions of my errors and in showing how God uses those to get me “back on track” that I think helps everyone see that I don’t consider myself “special” – I’m just doing what God has put upon my heart to do & sometimes I don’t even do that very well.