Saturday, March 14, 2015

Autoimmune disorders in real life

One of the things I'm finding out about having fibromyalgia is how interrelated everything in our bodies is. Autoimmune disease leads to more autoimmune disease, so that co-morbid conditions are really the norm.  If you have this, you are more likely to have this and this. It's freaking creepy, honestly.  I feel like I'm always waiting for another danged shoe to fall and it blows.

I have Hashimoto's thyroid disease.  I have fibromyalgia and the associated IBS.  I have diabetes.  I have fractory chronic uticaria (hives brought on by auto-immune reactions).  These are all auto-immune issues.  Two out of four of those can kill you (Hashimotos and diabetes).  The other two can make your life freaking hell with pain and itching. (fibro and chronic uticaria)

I've gotten the first three managed, finally. Now, I just have to get off prednisone and on immunosuppresants to stop the raging itching and I have to wait for the latter to build up.   I swear, when the hives are present, it looks like my husband gave me two black eyes because my eyes are ringed with welts.  My husband said I remind him of a Trill from Star Trek. (Google Jadzia Daz)  My hives though, aren't limited to the sides like that.  I get red lumps everywhere!

I get hives clumping on my ears, so I'm standing there scratching my ears in this very cautious and fervent manner that looks like I'm a raving lunatic. If you were to shave my head, it would look like my brain was not protected by my skull because I get so lumpy!  A friend, who also suffers with this stuff said, the boobs covered with lumps is horrifying.  I find myself trying to surreptiously rub my hivey boobs and trying to make it look like I'm just adjusting my bra. Yeah!  That's the ticket!

As if the other diseases weren't indignities enough, I think the most humiliating is the middle-of-the-night back hump on a door jamb.  I get leaned up on a door jamb to get the middle of my back and I catch myself in a mirror, looking like I'm screwing the hell out of the doorway backwards. I just roll my eyes, and I'm screaming in my head, "Fuck it!"  The cats think I'm a little weird, but I feed them and pet them, so they put up with me.  My backscratcher periodically shows up from hiding from whereever   I stuffed it last and I put that thing to task, regularly.  Some women are really into a BOB (battery operated boyfriend).  I am really into my back scratcher.

It's taken so much time to figure things out and track down information.  I feel like the Fates.  I feel like I've been handed scrambled strings and I'm trying to weave a life out of them.

You get so much information, advice, anecdotal evidence and general bullshit to wade through.  The information you have to determine if it's medical or commercial because someone's always trying to get you to buy their crap because it's going to fix everything.  The advice you have to decide if it's well-meaning, but worthless or medical and useful.  Trust me, when I tell you, being desperate means you'll try everything once. The anecdotal evidence you have to compare to teensy weensy widdle studies done all over the world with minimal results and larger studies with better results.  The general bullshit is just that.

Getting through that pile of strings and putting together the fabric of a life is a source of outrage, frustration, and occasional breakthroughs.  Much like gambling, with its occasional reward, people with autoimmune disorders are constantly on the lookout for those occasional clinks of coins hitting the slot machine tray.  My coins are things like yoga, meditation/prayer, exercise, and my family and friends.

Clink, clink, baby.

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