I don’t know what gave me this genius idea to document my demise. I guess me being an artist I have the need to tell the world about my disability and what could possibly go wrong,not that anybody reads these anyway.
Today was quite interesting. I had to go to the hospital to pick up more film for the doctors in Dallas to see. As usual I sounded like a robot when I spoke. I was talking to somebody whose son happened to have Spinabifita similar to mine. He said when his son has pressure headaches he presses his hand on top of his head to relieve the pressure so I tried it and it actually worked and I temporally stopped talking like a robot.
Once again as I was unlocking my door it took awhile for my brain to send the signal to unlock the door. It felt odd to stand there and wait for the signal. I wish I wasn’t going through this. I wish the doctors were better informed back in 1970 when it was installed. I wish they would have told my mom to have it replaced when I turned 20 and not 47. I wish there was somebody here to help me,hold me and tell me everything is going to be okay.
As I was doing more research. I was getting scared and I literally started crying.
It is over whelming of all the information on a ventriculo peritoneal shunt and what could possibly happened if a replacement doesn’t work. Blindness, pressure headaches, seizures and even the inevitable.
I am mentally preparing myself for the process of a replacement. I am doing everything I can physically do before my trip to Dallas. So I’m cleaning up and cleaning out my apartment. I am taking care of business.
Today was a new symptom. Today’s symptom was sounding like a robot. I was having a conversation with someone and I was literally talking like a t.v. robot. I was putting spaces in between each word. It was kind of amusing and it took every ounce of energy and concetration to carry a conversation which made my head hurt. It literally hurt to think.
I’ve also been crying because not of loneliness but because, I feel alienated…and scared because I have to go through these symptoms by myself. It’s scary to know I may have temperary blindness or possibly lapsing into a coma while I’m knapping.
I step outside everyday so I don’t become claustrophobic. It’s hot here in Texas right now but I need fresh air and sunlight.
I’m going to try to draw or paint just to keep my mind busy. It’s going to be a long week.
Today was a good day… I guess. The headaches weren’t as strong or bad as they usual. I didn’t sleep as much and I actually ate without feeling nauseous. Loud sounds and other such distractions intensify the pain of my headache. I went outside for a bit to see if I could handle it. It was hot. It was okay. I’m trying to keep my stress level down. I really need to stay off the Facebook. That has a lot of stressful information. I’m going to try to go out tomorrow for a bit to get out of my confines. Let see how I do.
I am not well. The headaches are getting more painful everyday. I’m exhausted mentally and physically. My thoughts are jumbled. I’m starting to speak slower and I have to concentrate just to speak and stay focused and that literally hurts my head. I feel tingly all the time.
I had to walk today and I lost my balance. I was in my crutches too.
I saw one of my friends in mass today. She said hi and I couldn’t even remember her name. I had a hard time carrying a conversation with her because I paused mid sentence to think about what to say next. As I was trying to unlock my door I was like a drunk person and couldn’t find the keyhole.
I eat very little because I’m also starting to lose my appetite. I get small surges of energy and when that happens I do as much as I can before the next wave of exhaustion hits. I’m still sleeping every 2 to 3 hours. I sleep alot, it’s hard to stay awake in my condition right now. I’ve been sleeping on the sofa and keeping one of the locks on my door unlocked just in case I do happen to lapse into a coma before the 19th when I have a neurosurgeon in DFW, some one will be able to find me since I live alone. I can’t wait for this thing to be fixed or replaced.