I spoke with my amazing neurologist this morning, and we did some problem solving and discussed the most recent issues that have made their presence known. A large part of me wants to just ignore all of this, to ignore that Big Green Monster, and pretend like nothing of significance has happened. Unfortunately, that would be as successful as trying to use denial to stop a flood. My briefly and hastily scribbled notes from our conversation summarize things pretty well. I need to make an appointment with a urologist to evaluate my bladder and the best way to deal with the fact that it appears it has joined the list of body parts with malfunctioning sensory nerves and spasticity. Remembering all of the testing I had done on my bladder as a child before the very general diagnosis of neurogenic bladder was made, I am pretty sure this is going to involve tubes in places God never intended for there to be tubes. See, there are entrances to the human body and exits and I am a firm believer in the fact that the exits are exits only. Next, I am to start on Cipro until I can get a culture for a possible kidney infection to my local internist for analysis and sensitivity because since I can not tell when my bladder is full it could easily back up into my kidneys and have created a significant infection. This infection could be what has caused my increase in weakness, and my back pain (even though the back pain is not in the kidney region) as an untreated infection in someone like me can cause increased muscle weakness, increased fatigue, increased symptoms. Symptoms like relying on my wheelchair more in the house where I used to use just my crutches or walker, having significant back pain, increased aching and weakness in my legs, and not being able to maintain lying on my side in bed without support. If these symptoms continue even after I start the antibiotics then I am to see my neurologist early next week. If things get worse or I have any issues I am to call her immediately. Our next step in the diagnostic process is going to involve very expensive testing for genetic disorders and such for the spastic paraparesis, as all other testing has come back normal. The testing is even more important because I can not obtain any family medical history from my father's side of the family beyond my father, his half sister, and his mother.
I am frustrated at this point, because it seems like whatever this monster is refuses to give me any chance to enjoy even a shred or normalcy before it starts to attack again. I am angry that this just goes on and on, and that it continues to be such a defining feature of my life when I have a different life I want to be living. I am scared because we can not identify this monster and we can not predict what it will do or figure out a way to fight back. I am worn down from almost a year of this without any respite or end in sight. But most of all I am choosing to remain hopeful and to have faith that God is in control, and that all that I do not know is known to him and that all that seems random chaos to me is being made into perfect glory by him.