Thursday, May 26, 2016

Bend. Don't Break. Adapt.

Apparently May is Ehlers Danlos Awareness month (along with, I'm sure, about a thousand illnesses and conditions I'm not aware of) and I realize there are only about four days left in May but that's four days of... awareness, I guess.

A few months ago, when I was sorting through the swamp of scary internet medical information, trying to figure out what--exactly--was going on with my body, I found a lot of help and reassurance in the blog posts and articles I read from other people who deal with EDS so, I don't know, I figured I'd write one too. Maybe someone in the middle of the diagnostic process will run across it and it'll help them. For all the rest of you out there: Enjoy the Star Trek snaps and information about a thing you will never have to deal with!

Ehlers Danlos Snydrome is a genetic disorder wherein one's body sucks at making connective tissue. It's a really unpredictable condition so various people in the same family could all have EDS but they could all have vastly different (or no) symptoms. Here's what EDS means in my body:

1- My teeth.
I've gone into some detail about my teeth before but here's some brief background. I've had crap teeth my whole life. I had my first root canal when I was eleven and have had five since. I avoided one by just having the thing pulled out--which wasn't really a great decision and I don't know why anyone let a thirteen-year-old make that choice.

2-My eyes.

Sometimes I need glasses. Sometimes I don't. My vision fluctuates a little bit every day. Sometimes it gets bad enough that I go to the eye doctor and they give me a new prescription. But my Rx goes up and down like an elevator and I've never had the same one twice.

3-My joints.
My hips pop out for no reason. My ankles turn over without warning. Sometimes I just stand on the outside edges of my feet and don't really notice until someone points it out. I have hitch-hiker's thumb and sometimes have trouble gripping stuff because my fingers just bend backwards like a bunch of wriggly earthworms. I also now (apparently) have a thing where my ribs sublux sometimes while I sleep and I have to put them back where they go before I can go about my business.

4- My skin.
Hey man, if you want the leotards you also get the skin stretchers.
My skin is velvet soft and fairly stretchy. It's not like... carnival attraction stretchy... just stretchy enough that I can do interesting things with my cheeks and various other body parts and dentists and doctors have remarked (without ever helpfully saying, "hey, you know there's a thing called EDS...?") on its elasticity. The party tricks are great but stretchy, velvety skin is also hard to sew up so stitches and surgery can be problematic. 

5- My immune system-- 
is shit. I pretty much can't leave the house without getting sick. 

6- My brain. 
Apparently there's a higher than average incidence of Asperger's Syndrome among people with EDS. This isn't really a huge deal. It's just sort of nice to know, I guess. 

The thing about Ehlers Danlos is that it can have an effect on pretty much every element of your life. From little things that mostly just impact one's vanity (I've had stretch marks and varicose veins since I was eleven) to larger issues (EDS is likely why I sometimes pass out) and all the stuff in between (I have some digestive issues and an overly high tolerance to local anesthetic which causes a lot of problems when dealing with item #1 and there are a few things I think I'm leaving off... I can completely fold my ears up into themselves) but it's really just part of my life. 

When I was back in Kentucky I saw a few of my friends in person and a couple of them wanted to talk about this whole EDS revelation. Is it a good thing that at least now I know? At least I can approach my health differently, right? Yeah. Definitely. Now maybe dentists won't ask, "Have you done a lot of really hard drugs?" when I am desperate for more anesthetic. 

Is all of this still a pain in my ass? Yeah. It is. I snapped a tendon sheath in my wrist a few weeks ago which severely limited my work and work-out time while I heal. I cried a couple of times, desperate to just do the stuff that I love and need to do. But then I was reminded, by another close friend, that I will adapt. Adapting is what I do best. I am Borg, after all. 

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