Aaaaaahh! I need to scream or barf or possibly do both! I need to vlog this before I go insane! Last Tuesday April 7th, I went to the doctors to find out the results of the MRI I had about a month ago now. Ugh, I could barf..anywhoo so apparently I have this rare condition called Patchegoria (can’t spell it) which means I have holes in my brain, I have a holy brain.
This condition is caused by abnormal cell migration and is what probably caused my Cerebral Palsy. There is no direct treatment for people with Patchegoria. I just looked it up and it’s actually Pachygyria which is not how the doctor pronounced it though whatevs. Pachygyria is fatal though the information I found was vague and a little contradictory. My mum said I’m not looking at the right sites, she said she found lots of info. My mum read that Pachygyria causes intense muscle spasms that could become lethal.
I have a lot of spasms every day which hurt like all hell and is why I spend a lot of time in bed. I have taken medication for it though most of the medications have side effects that I can’t tolerate very well. Some meds don’t work at all! It’s SO FRUSTRATING to feel debilitated by my spasms when I know in theory how to control them. I only spasm when I am stressed and unhappy.
I was in Cuba two weeks ago and I hardly spasmed. I only had to lie down for about an hour each day while I was in Cuba. Unhappiness and fear is my Kryptonite! Gaahh! This is my last year of high school regardless of whether I get my diploma or not because I’m turning 21 in September. I really want to graduate from high school! I also want to model and act! There’s so much more I want to do in my life and I am afraid that I won’t be able to do because of this Pachygyria thing.
So I’m sending out a call for help. If any of you know tricks and tips that might help me get through this tunnel please share them with me. Be well!