the broken paradox: November 2011

Tuesday, November 22, 2011

Brainy Nerves

I took a quick gander through my blog, and not only was I reminded that I never remember anything I write, but that I haven't given the latest details of my diagnosis. So here they are and I'll keep it short.

Some how, don't ask me how I have no idea other then the fact my Spinal Tap was involved; they figured out that the neroceptors, and receptors in my brain are deteriorating and not firing correctly. Similar to Parkinson's Disease. However to my understanding Parkinson's involves the whole nerve to malfunction and break down.

Hence the reason why my symptoms are spastic and have a relapsing/remitting nature.

At this point any news, even the bad news, is good news.

The Pure Me on Thanksgiving

Happy Thanksgiving to ME!

This year is the first year since 2008 that I will NOT be in the hospital for Thanksgivin'!

I know, crazy cakes!

For some reason every year they have always managed to let destiny plan my stays (for overnight EEG and other testing) that covers the week of Thanksgiving.

Last year I spent the entire month deteriorating at the Mayo Clinic, however this year I get to be closer to home eatin turkey with the grandparents!

Sadly I have not escaped this years tests all together though. In December I'll be stayin a week or so at my states amazing Hospital that is one of the top notch research hospitals in the country! The heads of the Neuro and Cardio, Gyno, and Gastro departments will all be collaborating Mayo style to get in my brain and figure out if there's anyway we can slow down this madness.

I'm excited for the hope this brings me and my wonderful parental caregivers. They surely do need a break too so having someone else coming to my rescue for a week will be a huge burden lifted.

BAD SIDE....I have to go off ALL my meds. They want to see my body as clean as possible to see exactly what it does on it's own. So far I've only gone off three of my million...okay eight...medications and already I'm a limpy wiggly child. I don't know if I'm going to survive a few more weeks of detox. I am really happy I get this opportunity though. I'm always so scared that my meds may be causing extra symptoms so now we'll really get to see. The pure me.

Long Story Shorter...

Pretty much I’m every doctor’s worst nightmare. I’ve brought down the biggest God complex ego’s around

For the first year my main diagnosis was “Drama Queen-attention seeker” then they realized, oh Shiataz! Her heart really is stopping?!? That’s when my pacemaker came in aka “Howard”

“Her convulsions are due to psychosomatic seizures…oh wait… just kidding, she’s convulsing because her blood pressure is 36/25 causing her body to revolt. Guess she has Nero depressor Compulsive Syncope.”

“She has Dysautonomia, no she doesn’t have Dysautonomia, oh wait she does have Dysautonomia…Blah Blah Blah…”

"Lets stick a needle in her back" (six months later) "Lets stick a needle in her back again and compare....OH MY! Looks like she's low on the good chemicals that help your brain neurons fire. Sorry dude guess your nerves just don't want to talk to each other

"Oh look she's got a cyst in her brain stem."

"Oh wait her eyes are shaking, and her pituitary is smashed. She must have intercranial pressure."

"She has EPISODIC ATAXIA!"

In a nut shell. My body and brain have about as good of a relationship as the USA has with the middle east, and things aren't getting any better.

This isn't just going to go away on it's own any time soon, my hands will still sometimes not work, my face will slide, speech will slur, my joints will lock, and I’ll have the occasional loss of bladder control. The point is- even after all that it doesn't mean I can't look back on it and say "Damn that's hilarious!"

Why Blog?

Before my illness I would have NEVER gave out details about my life to the universe but as I have been searching for information about my diseases and just trying to find support from others who suffer from chronic illness, I've stumbled across too many fellow 'sufferers,' who are having a hard time finding the upside to life. Here is the story of my struggle to let you know, you are not alone. Lift your head up, leave beauty wherever you go and garsh darn it! Be Happy, and don't be irrational or over-dramatic. Life is wonderful, perfect, splendid and marvelous! Even if ur body is falling apart.

Okay, I'll stop throwing up flowers and rainbows now.

Word of the Wise: Don't Google your symptoms!

I don't read any information of my symptoms online and I’m very cautious about what I read once I do get a diagnosis.

I don't read up because I've been called a hypochondriac too many times. I've been told by Medical Docs it’s in my head because they can’t figure it out so I've seen several Mental Health professionals they have all said something organic is happening in my body. So who the hell really knows? All I know is one: if I don't read everything that's out there on my symptoms then they can't claim that I'm just having pseudo reactions to what I've heard.

So if I were you I’d just seek out support for your disease and let the Docs explain what’s going on and exactly what websites to visit.