the broken paradox: Once There Was A Snowman

Thursday, December 1, 2011

Once There Was A Snowman

I've missed winter. As I listen to Pistol Annies new album, and I listen to the wind crashing into our tree's and Christmas lights I can't help but smile. This next week is this year's dreaded hospital week. Where I'll go and be analyzed for 168+ hours straight. But at this point I don't care, I may be off my meds which makes typing this incredibly painful, but it's worth every letter to say: Life is so beautiful. It's perfect, even with Naomi.

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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.