Beyond blessed....

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...

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...

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 :)

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...

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...

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

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