I have been lax in writing over the last number of weeks for a litany of reasons. One reason being the lack of control of my fingers. Other reasons dealt with either medical, scheduling, topical, psychological or just plain wishing all this would just go away.
It didn’t and it won’t.
The finger issue is pointing to a feed-back loop issue that is due to the death of spinal and bulbar nerves. The actual words used in the doctors office was “dying spinal nerves,” Not a phrase I like to hear.
Another word that was thrown around was seizures. I have an EEG scheduled to see what type of seizures they are. I was befuddled, because my “seizures” last 36 hours. From what I thought I knew about seizures was they only lasted a few minutes, not a few days. Again, I am wrong. There is a chance that they are not seizures. I will pray for that.
Pending the outcome of the EEG, occupational therapy is likely going to be scheduled. I’m having trouble feeding myself. This hasn’t translated to weight loss, as you would hope.
To say the least, I am down. I now have more meds prescribed and I’m about to purchase the mondo-sized pillbox. I am very fatigued and injured. During the latest “seizures” I pulled the muscles in my legs and arms. And, my legs stop working frequently. I have to lock my knees and hold on the the walls of the hallway to make it to my wheelchair when they do.
My puppies fear for me. They do not leave my side when I’m in trouble. Once I’m in the safety of my bed, one relaxes and the other stands guard in my room or my bed.
This whole disease is exhausting and I am mentally fatigued by dealing with it all. I wish I could take a vacation away from myself, but that isn’t really possible.
I pray that He has a reason for all of this.
Jay C. “Jazzy_J” Theriot