The ups and downs of it all...

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

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...

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

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...

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...

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...

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...

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...

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...

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...

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...

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