Being Scared

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.


VP shunt malfunction: Things are happening.

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.

Vp shunt replaced. 

I’m going blind. I really am and it’s because my VP shunt is finally failing. After having it in for 47 years with no problems its finally had it. I knew it was causing me problems when I started getting headaches and blurry eye sight. For those of you who don’t read my blog. A vp shunt (ventriculo peritoneal) shunt is controls my hydrocephalus; an over production of the cerebral liquid.

My speech is slurred at times and I lose my train of thought. l’m exhausted all the time, I have a hard time keeping my eyes open and I’m going blind but I’m not allowed to go to the emergency room until I’m completely blind or I feel faint.

In the next couple of weeks I will be taking several trips to the DFW until my surgery because there are no VP shunt specialist here in this rinky-dink town I call home.I will also be doing a lot of drawing and painting just in case something happens. I will have left my mark on the world. I’m not scared. I can’t wait. I will be rid of the headaches for good. But until then I just sit and wait.