His "good" can be found in every "bad"...

It's a long one, but when have I ever posted a "short one"!!! The past few days have been difficult. The reprieve I had from the noise sensitivity has gone and so I find myself, once again, having to wear headphones and ear plugs. In morning treatment it isn’t so bad because everyone else sleeps. In fact, most everyone should sleep when they’ve been given 50-100 mgs of IV Benadryl. However, I’ve never been like everyone else when it comes to medication. I have yet to sleep in treatment after almost 8 months here. So, the mornings are quiet and I can take my headphones off and that is a blessing. No matter how expensive or “comfortable” headphones may be, they were not meant to be worn for 6 hours a day. They give me headaches from the pressure they put on my head and face. It seems to be a situation of either having headaches from the headphones or headaches from the noise and neither is good. I have been blessed that the light sensitivity is not as bad as it once was. However, it too is coming back slowly.

This is what I referred to in my last post. This is a “herx” and I do hate it. The Babesia that we are targeting with the new IV antibiotic as well as with an oral “anti-malarial” drug is what causes most of these symptoms. It’s the one I talked about that tears my red blood cells causing me to not get enough oxygen to my brain. It’s the one that leads to seizures due to that lack of oxygen. The past few afternoon treatments I felt that scary “pre-seizure” feeling. I came home with migraine headaches and cried when I would have to go lay in my bedroom in the dark with a fan on loud enough to drown out even the smallest noises. I have not had a seizure, thank you GOD, but the precursors seem to be coming back. This is when the headphones, earplugs, etc. just cannot do enough. I had also been having a fever of around 100 each night by the time I left treatment. Having a 100 degree fever is not even considered a fever by most doctors’ standards, but when your normal body temp is right below 97 degrees, a 100 degrees feels like a fever of 101 or 102. I have found that by afternoon treatment my body has started hurting again. The bone and joint pain are bad but this time my spine hurts and that comes from the Bartonella I believe. I have “doctored” my treatment chairs with so much memory foam and yet I cannot get anywhere near comfortable.

The biggest issue for me is that by the afternoon session my brain is low on oxygen yet again. I have realized by now that I cannot talk during afternoon treatment or the headaches get worse. For those who know me, well, the idea of me not talking for 2+ hours is laughable. I started talking at an early age and if you ask my parents they might tell you I haven’t shut up since…haha. It’s true to an extent though. Even through this blog one can tell that if I type this much, well who knows how much I might actually say if I had someone sitting in front of me! So, again I have to find a “new normal” in this fight. This new normal would include me trying new things to keep my extremely talkative self from talking at all for those 2+ hours which will be so hard on me. My plan for now is to take my portable DVD player and plug in the “ear buds” and cover those with the headphones and just focus on some light and easy movie since my light sensitivity is not as bad as it once was. I don’t know if this plan will work but I’ve tried reading and on the medication I just lose focus and can’t comprehend as well. Plus, reading sometimes gives normal people headaches. I’ve been knitting some to try and focus on something else, but no one was surprised to find I could easily knit and talk at the same time haha. So, today I go with my “plan B” of watching a movie. We’ll see how it works out.

The good news is that I have had a 3 week rest from the seizures. This has allowed my body’s levels of carbon dioxide to come back to more normal levels. When I had 4 seizures in 8 days my levels were dropping and now they are back to a more normal level. My red blood cell count is low again but this is due to the Babesia tearing the red blood cells. It causes my over all blood levels to drop a bit, but thankfully not too low. God gave me time to allow my body to heal some from the horrible seizures that lasted for so long and were coming so frequently. Now I feel He is telling me to literally BE QUIET. Sometimes I think I talk so much, think so much, that I have a hard time hearing Him. I hear Him now though and He is telling me to hush, to rest my body, to try and conserve my oxygen so that I don’t have a seizure. I’m listening and trying my best to follow His instructions.

I did find that the fevers I have been having are due to an infection in my nose and throat. The doctor has prescribed a nasal spray that actually puts the antibiotic into your nostrils and sinus cavities. We hope that by starting this after treatment today I will fight off this infection and not have to deal with the aches and headaches that often accompany fevers. But guess what? I am thankful to actually have a fever. I know that sounds ridiculous, but fevers mean my immune system is actually trying to work WITH me. For 20+ years I have had all sorts of viral and bacterial infections and never run a fever. When I was in grade school my mom would have to force the pediatrician to run a strep test because she knew that’s what I had, but the doctor never thought I could have strep without a fever. Every time they ran the test he would have to see that I did have strep with absolutely NO fever. Fevers mean your white blood cells are trying to fight something. It’s like the alarm sounding in a firehouse and once those white blood cells hear the “alarm” of an infection they swarm out and it results in a fever. This is one of the many things I am referring to when I say His good can be found in every bad. God is good. God is slowly healing my overworked immune system and my lab results are showing improvement. It may take 6 months or so to rid myself of the Babesia but God’s plan for me is perfect, no matter if it includes fevers and seizures. He is with me in all ways, on all days and I am forever grateful to feel Him even when I might not think I’m “hearing” Him.

Some people may read this and say that it’s the medication working, that this is simply science, but that is just not true. My doctor even seems to me to be a bit stumped as to how much my labs have improved and I often feel it’s because the reason for why they are improving is not clear, scientifically speaking. I know why they are improving though. It’s because of God pure & simple. I know after much prayer He divinely led me to this doctor, to this clinic, and after much questioning and debate, my husband and I realized we had to follow where God seemed to be leading us. It has been a long and sometimes extremely hard road, but we knew and we still know that God led us here. It is HIM who will receive all the glory for my healing and improvement. I’m not saying medicine is not at all why I’m getting better, I am saying that God is using my doctor as His tool, that my doctor is not the healer but is His instrument for my healing. I know so much about medicine after the years of bad health I have endured that sometimes I think I should have an “honorary M.D.” so I know what kills infections, what blood tests show, what can be expected from each infection I encounter. However, I know without God I would never have made it through the past 7 and a half months, mentally or physically. God has chosen to put me “in the fire” so He can mold me into the person He has planned for me to become. I have no idea where all of this, these illnesses, this time away from my family and friends, this difficult road is leading me. I only know that I am praying that I am following HIS will and that the pathways I walk are ones He has ordained for me to walk on this earth. I have no doubt that He is my Great Physician, my true Healer, and definitely my Comforter. I want to get well, I want to be healthy, but more than any of that, I truly want to become the person God wants me to be.

So there you have it. I had been scared the last couple of days about “what ifs”. As in, “what if the seizures come back?” or, “what if I cannot get rid of the Babesia and have to endure months of seizures?” and those are understandable questions. I wouldn’t be human if I didn’t worry or question these things at times. Yet again, God made something clear to me yesterday. Before I met with the doctor He made me realize that stress is a big trigger for my seizures. Guess what asking all of those “what if’s” does? It stresses me out. I could stress myself into a seizure if I focused on all of the “what if’s” and I would only have myself to blame for that. Again, He made me see that He brought me through all of the seizures that came before and that He would be with me if they start again. There is nothing to be gained by worrying. I had to focus hard on the fact that God did NOT give us a spirit of fear! But oh how Satan can get in your head and make you doubt and question and scare yourself to death! I refuse to allow that to happen and I can do that only by relying solely on God and His love and protection. He has gotten me this far and if I put my full faith and trust in Him, He will continue to carry me through the rest of this journey.

This has been a long one. Sorry for always writing so much, but now you can truly see how I might just talk myself into an oxygen deprived state, huh? Haha. Just a bit more and I will be done! I pray that all of you are doing well. I pray that you all refuse to go out into the world every day with a “spirit of fear” – no matter what your fear is, God is greater than that fear. He only wants you to “cast all of your cares on Him”, follow where He leads you and He will work the rest out for you. Faith is not just believing in God – faith is “stepping out of the boat” just like Peter did when he asked Jesus if he could walk out onto the water. The moment Peter started to focus on the fear, the moment he took his eyes off of Jesus, that’s when he started to sink. That is still true with us in this day and age every single day. I have to constantly remind myself that I am not in control of any of this. I am simply meant to pray, and to pray hard, for God to make His will for that day, or sometimes just that moment, clear to me. I pray to Him to keep my eyes focused on Him, on His ways, on what He has already done in me and for me. I bet if you look around, no matter how bad your current situation is, you could find things to be thankful for. We all take so much for granted. I know I did and most days I still do. But I keep praying to see my blessings instead of focusing on what I perceive to be “the bad stuff” because He uses all those bad things, those bad times, for our good if we allow Him to. It’s about trust and faith. Those are hard things because we can only see with our “human eyes” and have no idea what God sees for us. Just pray every day that God will show you what to be thankful for, what blessings you do have in spite of what troubles may be in your life. It’s a choice and I have to choose every day to believe that God’s plan for me is a good plan, even if it includes some seizures. He is in control of all of it. I just have to thank Him for always being with me and oh, how thankful I am for that!

How odd is it that I just flipped my daily calendar to February 4th and found the following verse:
"The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid?" Psalm 27:1 (NRSV)

No coincidences there, none at all! Much love to you all!
K