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Tuesday, December 15, 2015

Coming Up For Air

There's a pain scale, the one you see at hospitals and emergency rooms, where they ask you to rate your pain. One is painless. Ten is obliterating pain. Eight is pain so severe that you have trouble focusing, talking, or doing basic tasks.

I've been at an eight for the past week now.

My email is always open if you want to ask about Ehlers-Danlos Syndrome, which is the root of this pain, but even I don't understand what triggers the flares. There's no food, or activity, or cause that I've found. I just wake up in blinding pain.

After a five minute drive this morning I found myself eyeing the local gun shop. Not to shoot myself, but because I wanted to put a bullet in my hip to make the pain end. It's that bad. It's been this bad off and on since last October and none of the doctors I've seen will listen. So far I've been told to: stay off my leg, lose weight (hard to do when you can't move FYI), and just be patient. I've been told that I'm too young to have hip pain like this. That it's probably a twinge from working out too much, or a leftover ache from my pregnancy four years ago.

This isn't just stubbing your toe pain.

This is constant, throbbing, unending pain. It drowns me. It's hard to think. Difficult to focus. My temper is stretched like a piano wire and I'm ready to take down the first SOB who even looks at me funny.

There is one medicine I can take that dulls the pain enough that I can sleep, but it leaves me nauseous and likely to be sick to my stomach for up to forty-eight hours. Six hours of semi-painful sleep, and two days of stomach cramps, nausea, and an inability to stomach food.

That's why the blog has been neglected. That's why the blog is going on hiatus at the end of the week. That's why I haven't answered your emails, been on Twitter, or responded to your questions on Facebook. I would say I'm dying, but I'm not. Dying would be so much easier.

When you're dying, you know there's an ending. If you have cancer or a terminal disease at least you know there's a way out. For a chronic condition caused by a genetic mutation? There's nothing.

I don't know of anyone doing research to "cure" Ehlers-Danlos. They barely understand it well enough to treat it, and even then I have to lecture most my doctors about the condition.

There isn't an end date for this pain. It's not going to heal in six to eight weeks in a cast. This pain that's drowning me, that's sucking my life away, that's making every waking moment a torment... it isn't going to end soon. As I get older, the pain will get worse. It will spread to other areas of my body. It will leave fully disabled at some point in my life.

I'll be trapped - a thinking, feeling, rational human being - trapped in a body that registers nothing but pain.

I can't begin to describe to you how much I hate knowing that. I wouldn't wish this on anyone else. I pray my children's variation of the disease will not be so severe. I worry for my little cousin who has it far worse than me and who has already undergone so many surgeries. I wonder if I'll have to become chemically dependent on opiates to function, the many people with my condition do. I wonder if the opiates will work, because I know so many pain killers don't work for me.

And to top it all of... I broke my tow yesterday. My pinkie toe. It looks like I mashed it with a hammer, and all I did was sit up wrong and bump my footstool.

Right now the broken toe registers as a 1 on the pain scale. It's such a minor nuisance, this broken bone, that my brain dismisses it. Meanwhile, the hip my doctor insists is perfectly healthy is a pounding 8.

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