Hooray! Phuckin A! Today Is Rare Disease Day!

February 29, 2012

I’ve been ignoring personal emails, and I’ve been avoiding Facebook for about two weeks now. I’ve even been dodging the few phone calls I’ve gotten, one or two which I did eventually get back to. Since I felt more awake today and am trying to get my mind in place, I figured I should at least clean up my inbox. You know how you can still get some comments people leave on FB groups without actually having to sign in? Well, I read a few and one caught my eye.

It had a link to a site I’ve never heard of but now that I see it, I think it’s pretty awesome. They have a Rare Disease Day! 

Hooray for awareness!

I have a rare condition, uh, disease. It’s called Osteogenesis Imperfecta (OI) that I’d briefly mentioned in my overly self-indulgent “about” page. Naturally, through friends of friends of friends I’ve been added to dedicated medical groups on FB, and I learn something new all the time like Wish Bone Day, which is another awareness day but specifically for OI. I’ll let you guys know when I take the time to look at it. I believe it’s sometime in late March or April so it’s coming up.

Anyway, I just thought I’d share so that maybe you could share or just take a look at. The kind of conditions people live with are astonishing sometimes. When I’ve found myself in the ER, I’ve had doctors in the triage give me that look like, “Oh shit, how do I go about this? Ok. Ok. I got this.” It’s that look of false confidence, or in some cases, that look of terror that can only be accompanied by a monstrosity–because, though they may have heard of people like me in medical school, chances are that they’ve never had one right there in front of them. So they feel, and sometimes are, ill-equipped to properly treat.

I also notice that often times studies for rare diseases don’t get as much funding as they should. And they should! Biphosophonate infusions are rather new treatments used for children with OI, especially children with more moderate/severe types like the one I have. Some of these kids are now walking as early as the age of six! Trust me, that’s almost unheard of for a kid with Type III OI. Walking at any age is, well, rare.

It’s all because of studies that eventually lead to discoveries. It’s something my generation didn’t have, and I’m not old guys. But, despite my young and youthful appearance, I feel old. My insides feel clanky and haggard, my brain more crumbled and sour than an old man’s bitter beer face. All we had were osteodomies, which is a more or less crude rodding of the long bones. Yeah, I’m full of metal. My bro used to call me Robogirl even (I didn’t wanna be Terminator Girl). We were fans of Robocop obviously.

So I say a hell yeah, give a tip of the hat and a wink (with the only eye I can wink at the moment) to organizations like these.

In other news, I’m feeling a bit, just a bit, ant-size bit less–for lack of a better word–“depressed” at the moment… just a little less crazy today. Can you tell? Maybe I’m a little awake because I had that physical therapy appointment this morning. Maybe it’s because the sun came out full-time today

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4 Responses to “Hooray! Phuckin A! Today Is Rare Disease Day!”

  1. the howler and me said

    The sun always makes me feel more alive… most of my friends call me a “sun worshiper” -shrug- it just makes me feel better.

    • PAZ said

      I’ve noticed throughout the years that the worst times for me have been during the shifting of seasons–fall to winter and winter to spring–and I just tend to shift too whether gradually or suddenly, no matter what else is going on. I’m convinced now that the sun has a lot to do with it. So “sun worshiper” wouldn’t be inaccurate for me. You could tell your friends in a very monk-like tone, “but it gives us the full force of life; it feeds us energy, just feeel and feast” Then they’ll really mess with you. 😉

  2. […] if you’ve been following my blog, you’ll remember that I wrote a post titled “Hooray, Phuckin A It’s Rare Disease Day!” and well, this is my promise of updating when the “awareness day” for OI would take […]

  3. […] the first post I made about Rare Disease Day back in […]

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