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!