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