Wednesday I have another appointment at the Brain Injury clinic. We will decide then if my Stevens-Johnson Syndrome (SJS) has settled down enough to have my next round of Botox shots and start some other pain/headache meds. If the Physiatrist (Rehabilitation Specialist) does not think it is wise to do the shots or try any meds then we come up with a new appointment time and do the wait & see thing again like last time.
I have been coping pretty good with the pain. I am getting tired, and hate the fact that when I stop to rest that the pain feels so yucky that I push myself to keep going. I go until I burn out. Then because I am burnt out and my immune system is poochy I get a damn SJS flare and then the flare does the irritate bright red, slight blister, slough and burn physically. I had one that affect my face and mouth around thanksgiving. Then it started to affect other parts of my internal organs this week. Grrrrr! So I am told to be patient that it is in the early stages of recovery. I have heard that one before….my TBI (traumatic brain injury). I need to breathe…breathe…think distracting thoughts and breathe in pleasantly distracting smells.
Because Foothills is a learning hospital, I often get the full meal deal Neuroexam. That includes both physical and cognitive testing by the interns or other doctors in training. Neurology exam made simple is a great site to see the videos for the physical testing. They often make me walk in straight line and keep my eyes closed and see me weave forwards & backwards too.
I must look pretty funny if someone saw me doing this in my bedroom. At least it always make me laugh. I am working out my muscle memory to coordinate my right hand and response time. I know that it will do it, but the lag time is what kills me. I think that the Docs think I am a good patient for students to learn on as I am as stubborn as a mule and don’t like to give up.
Here’s to getting myself all psyched up for what is like an Commenwealth Games event for the brain injured. The Olympic Gold medal event is what I would consider the Neuropsych testing that takes at least four hours to do. You just gotta know that I have to win that darn first place medal during the exam. I always hope that I will miraculously not show any signs of anything wrong with the brain. I can always hope for the Hail Mary and take whatever small gains as a win.