Well it has been a couple of weeks since I last update. You know I don't usually read what I last wrote so if I repeat myself, I'm sorry. Things have continued to backslide somewhat as far as my symptoms go and everything is so up in the air. I won't be dealing with work issues until at least next week. As much as I am trying to just trust God and not worry about it I catch myself getting a little worked up. Bottom line on this issue- financially I need to keep working (at least from my earthly perspective) health wise I probably shouldn't be working. I have been having a hard enough time keeping up on everything just being back at work part time. I am not great about getting all of my pills and stuff in and this is while I'm on the antibiotic break. I can't imagine what life is going to be like working, with kids back in school, and going back on IV's in two weeks. Not looking forward to it all and I think I have been stressing myself out about it a little.
I feel like since I stopped my meds that I have started to regress. The seizures/twitching are definitely back, pain is back, muscle spasms have increased, memory and brain function just plain suck, fatigue is getting worse, weakness is increasing, heart issues, dizziness, on and on and on the list goes...At this point I am feeling like very little progress has been made. Just last night I had one of my really weird episodes where I can't help but wonder if I might die before the morning. It is so hard to explain but you feel so strange. It's almost like you feel your body is shutting down. I don't know if its the second heart med or what but my heart rate got down to like 61 which started to freak me out a little. When you consistently run at about 88 bpm or higher and now you feel your heart pounding while you are watching the rate continue to drop, let me just say it's not exactly comforting.
I love my doctors and I have to have faith that they are doing the right things but I can't help but wonder if I am missing something in my treatment. I know this may be a forever battle on some level but I had hope at some point that I would get some of my life back. At this point I am not so sure. It's not that all hope is lost but I can't express how disheartening it can be when you begin to wonder if this is as good as it's going to get. I believe some of my frustration comes from realizing some struggles I have had and maybe some missed opportunities in my life have been because of this awful disease. I just didn't realize it at the time. I try not to spend a lot of time dwelling on the past and looking at everything Lyme has taken from me but it surfaces now and then.
I know God sees the bigger picture and has a plan and I am trying so hard to be okay with what that plan is. But in my heart of hearts, I am afraid this thing is going to take my life. I prayed last night that I be okay with whatever God had in store. I told him I wanted to be hear for my kids and that I felt I had more left to do but if it His will that I be taken earlier that I could have ever imagined that I needed to be okay with that. It was surreal to be uttering those words. God please don't take me yet. I don't want to die.
I am looking into a center in Kansas that I can go to for treatment. Of course my fear is the cost. I am sure it will not be cheap. My parents ask me all the time what else can we be doing to get me better. Frankly, I don't have a clue. I don't know where to go or what to do next. I guess I need to try and get my husband or parents or a friend to help me figure this out. I just realized that I (the control freak) have done almost all of the research and really run this show with selecting doctors and cluing everyone else in on what is going on and how to try and fix it. My husband and dad did learn some from going with me to get my IV's in the beginning but I don't think they have ever really researched this disease. I am blessed to have as much support as I do but I guess I am actually admitting I could use some more. I would love for someone else to research all of this specific to me and suggest something. Sometimes I feel like I am pulling teeth and torturing friends and family, telling them about lyme, asking them to watch documentaries, etc...Anyways who knows what will happen next. I need to call or e-mail Kansas now. (It's called the Hansa Center for anyone who is interested)
Well I guess that catches you up a little bit. Frustration has been my primary emotion lately and as you can tell I am physically getting my butt kicked again and I just am not sure what to do next. Just gonna keep moving forward one moment at a time. Lord knows this disease operates that way and I have gone from fine to bad in nothing flat. Just keep me and all the other lymies in your prayers. My heart breaks daily for everything that some of my friends are going through. From being severely physically ill to lack of money to no support...hang in there friends we will get through this.