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
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