Botox & Xeomin!

I wake up in the morning, groggy from not having enough sleep lately and go to reach for the door that won't open. For years I've been using my left hand to do things like open door knobs, do my hair, carry bags, cook etc. It was hard to get used to doing things when my hand first curled in 15 years ago, but over time its just become natural and I've learned to do almost anything with just my thumb and index finger. My index finger is quite deformed and my whole hand aches most days but its been useful enough for me to live with it. I spent years getting botox in my hand and my leg every 3 months because that combined with my DBS would loosen my muscles up enough to at least make it less painful. It sometimes would straighten my hand and foot completely but other times it would just get weak. Over time, the botox stopped working and we thought maybe my body just got used to it. My doctor suggested we try a new drug called xeomin. It would be injected the same way the botox was. I would lay on my stomach while the bottom half of my left leg and foot turned inward. She would inject the xeomin into the bottom of my foot and my leg. Next, Jim would help pull my fingers open and she would inject the xeomin into each finger, and all over my arm. Usually at the end she would give me a little in my trapezius muscle because this is usually in spasm and causes me a lot of pain in my neck and shoulder. Last year was really hard on us and we lost our health insurance. I eventually got it back but it was different and didn't cover my injections. I spent months trying to figure out how to still get it done but nothing worked. I eventually got better insurance and took a ride to Albany, thinking I was getting them done. When I got to my appointment, I quickly realized that my insurance didn't approve them either. In August of this year I got new insurance yet again and they denied it... again. This is hard for me to deal with and I had stress from other things in life which all made my dystonia worse. Anyway, I accepted it and just lived with the constant spasms while we tried to appeal the decision. I then found out my generator was dying so I scheduled surgery for September to have that replaced, thinking there might be a chance a new generator could make my dystonia better even though I knew deep down it wouldn't make a difference. After my surgery, I reached out to my neurologist to see if she would see me to change some of my settings on my DBS since I couldn't get the xeomin or botox. So, last week Jim and I got Max buckled in to his car seat and took the 3 hour drive to NY. I had to have my post op appointment first that we knew would only take 5 minutes then we went to see my neurologist. I had to see the nurse first, where Max was scared to death of the blood pressure cuff. My doctor came out to get us and we went back to the exam room, not sure how Max would react, how long we would be there or what would be done. The doctor looked at me and said "I just got the approval for the xeomin!" I didn't know if I heard her right so I just stared at Jim waiting for his reaction. I could tell he didnt hear her either so I looked at the doctor and she said she would be right back because it seemed too good to be true. She cane back and told us it was the best thing that had happened all week, I was getting the injections!! Jim ended up taking Max out to the car and a nurse had to pull my fingers out to do the inhections. My leg was so tight the needle she used to do the injection actually bent and she had to get a new one. After over a year of waiting, I might finally get relief! She didnt end up changing my DBS settings but I will be going back in a couple weeks to work on that. She did say we dont know if my DBS will ever work on my left side because I have so much scar tissue in there. I did know that but hoped it would still work with the right settings. She also said the xeomin might not work this time because it has been so long since I got it. My hand and foot are both still clenched but this morning when I went to open my door, I realized my hand is now too weak to use. It is a hard decision to make, whether I would rather have it very tight and painful or loose and weak but can't use it. I have found the weakness is slightly better but I do get very frustrated when I cant do something. So, it seems like Im back on track to getting some kind of relief and while I wait for everything to start working, I just think to myself how nice it will be when a cure is found!