One of the first reactions I get when I say: "I was diagnosed with fibromyalgia last year" is "Oh my gawd! I'm so sorry!"
And I try not to fill my Facebook status updates with my random whiny rants about how much it sucks. But once in a while- like today- I'll bitch about it. Because it keeps me up at night and I have nothing else to do. Oh, sure, I could work and put new listings up in my etsy shop, but pssh, it's the middle of the goddamn night! And inevitably, someone shows sympathy- and that's fine, and in the course of the comment-conversation, it turns to medicines. I just want to say a few things here...
You don't have to feel bad for me because I was diagnosed with this very real and debilitating disease. You don't have to make the sad face and say how sorry you are. Because, you see, now that they know what it is, they can do something about it. And they're trying. Everyone's fibrofuckingmyalgia is different. Some people get that widespread pain those TV ads talk about. Some get localized pain (also referred to as "hot spots"). Some people just get the pain, but not the crushing fatigue. You get the picture. And that's where the drugs come into the discussion.
When you're talking to someone who has had a problem for a long time, odds are, they've tried it. Whatever it is you're about to suggest, they've already tried it. And it either worked for them or it didn't. Or it worked for a little while, but then the side effects interfered with something important like, oxygen... or blinking. And I don't expect people to keep notes on my life or keep track of the minutia that is my treatment, but everyone pretty much knows that all my medical dealings (aside from the total knee replacement) are handled by the veteran hospital. And the VA has a protocol for treatment. And we have to follow it or I won't get treatment. So, we're taking those steps ('we' being myself and my rheumatologist). She can't skip anything- like say, jump right into the name-brand medicine you see on TV (and how fucking annoying are those ads, really!?). To skip over a treatment option, something has to be wrong. Something big, like having your legs, feet and ankles swell up like the side of Rocky's face after Apollo Creed decided to make meatloaf.
It is common knowledge about where I go for treatment. I've told the story so many times in the last year. When it comes down to getting that drug they talk about in those annoying TV ads ("I learned that connected to our muscles are nerves!" Really? You learned that? Guess what, I learned that the sky is blue! HOLY SHIT! RIGHT?!), I won't get the name brand. I'll get the generic. That's how the VA hospital does things.
Now, back to my original point- don't feel bad for me, really. It's a good thing that I was diagnosed with this disease. Because knowing what it is makes it a little easier to deal with. It doesn't make this fickle bastard easier all the time, but knowing there's a name to it helps. I'm typing this at 330ish in the morning because when I went to bed last night, my feet and legs started to itch. And I mean itch. That under-the-skin itch. That four-million-hairy-legged-spiders-trying-to-escape-from-my-pores itch. The internal itching that makes me want to douse my body in lemon juice and then roll around on broken glass itch. After an hour of twitching and staring at various things in the dark of my room, I got out of bed. I've been sitting at the computer, acting like a general fuckwit on Facebook (hey, it was all in good fun on a group page where being a fuckwit is a plus), resizing photos and watermarking them for listing on etsy later, and playing Windows7's idea of solitaire (the flipping sounds of the cards just tickles me).
And I was bitching in a status update. And that status update conversation is what spawned this blog.
So, if you've kept reading this far, thanks. And remember- when someone tells you they've tried everything- chances are, they have. No, you don't have to say it- they did, really.
Also, for shits and giggles, here are some photos I took today. I went outside in the 98° heat three times today and took about 60 photos total. These are just a few- for those who don't know, all these flowers are in my yard.
While I was going through and picking photos at random, I had two thoughts- "these are what the disabled guy says are not art."
And, "I'm quite proud of myself for getting outside three times today to take these photos."
Then it hit me.
The extra physical exertion in the extreme heat (there was a heat advisory out today) is probably what triggered tonight's lack of sleep and excess of itching.