Recent Events

Just when there is hope you get knocked back some. Yesterday (7/15/2012) right after church I had another seizure. It wasn't as out of control as the others I have had, but it was still pretty large. The only thing we have to stop them is Valium, and that puts me out for a while. I don't know if it is the change in medicine or if there is something more sinister happening, all I know right now, it is scary for both me and the family. Up until that time, I thought I was making a little progress. I am now at physical therapy and I make a game with the kids to help me do my exercises, that way I can be with the kids and get the exercises done at the same time. Now I am trying to find a therapist to help handle the mental aspect of this beast. I have found the best way to answer the question, "Are you feeling better?" is to tell people that it is asleep. I am never "better" per se, but it is asleep meaning I have no pain right now. It is the 900lb gorilla in the room that if you irritate it to much, will wake up and start to destroy things again. So now we play the game of trying to keep it asleep. That takes a lot of mental energy to do, it's like tip toeing around someone who may explode at any time, and that is where the therapist can help. I claim I am a changed person. Dana thinks I will return, but I don't have that much confidence. I have learned you can walk through Heaven and Hell and not have some stick to you. My first ketamine infusion was more of a spiritual awakening for me. I experienced things during those three days that were amazing. The second infusion was exactly the opposite. Both have affected me in very profound ways. My brain is still trying to sort out what what is "saw". I find if I am not concentrating, I have flashbacks and they are as vivid as ever. They will go away in time, but until then I have to keep occupied. I am more reserved now than I was before and I am move "level" as well. It may be the drugs, but I also think that because I have to spend so much time fighting, that I have learned to just drop the baggage I used to carry around that I thought was so important, and focus on getting better. I have a new pain doctor now. He is more of an expert in CRPS and has given us more options. This was a direct answer to me blessing. We have more hope now of controlling this beast with the right doctor. We feel your prayers and thank you for them. I will continue to update as I can. John