I spent Saturday in Dallas with my brother. We drove up there for a seminar on self development and although I didn’t let my brother know, I was more excited about the road trip than the actual seminar. It was a four hour drive from Houston. We picked up breakfast on the road and I slept for about two hours before waking up as we passed some vacant Texas town. We jammed a lot of our 90s favorites and chatted about relationships, politics and the universe.

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I’ve been recovering from bronchitis which I caught a little over a month ago, so I still have sporadic coughing fits that leave me breathless and achy all around my chest and rib cage. When we finally arrived, I was hoping that I wouldn’t be coughing during the entire presentation and fortunately, I didn’t, but that’s because I popped three cough drops in the course of an hour.

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After the seminar, we went to eat tacos at a colorful taco spot called Velvet Taco located near downtown Dallas. My brother said it was very hipstery and I chuckled at the thought that he was probably right. I don’t know when the use of “hipster” is appropriate, but in any case, I don’t want to be associated with it. It irks me if I’m ever called that. Oh yeah–TACOS! The tacos were de-fuckin’-li-cious! A mixture of Asian cuisine with the traditional Mexican tortillas (sounds pretty hipstery huh?). I ordered one with chickpeas doused in all sorts of Indian spices and another shrimp taco which was tasty as fuck!

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As I reached for one of my tacos, I fell into a coughing spell.  I hacked and hacked and heard a crack in my rib. Cough. Cough. Cough. CRACK. Damnit. I know that sound and feeling all too well. Yup, I fractured another rib. I say another because the year before last I fractured three when I slipped getting out of the shower. I think I fractured one last year but I’m not sure how. And I cannot recall how many ribs I’ve fractured in my lifetime.

A fractured rib from coughing is the kind of thing that is common when you have Osteogenesis Imperfecta (OI). I remember a discussion on one of the OI Facebook groups I frequently peruse and occasionally participate in. A guy asked, “what’s the weirdest fracture you’ve had”? One of the most memorable replies I read was a guy who said he fractured his skull while sneezing. I’ve had a hairline fracture on the frontal part of my skull, but at least I got that when I fell out of a car in a drunken stupor. Seems legit, right? Seems earned. But sneezing?! Damn. That beats fractured ribs any day (not that there’s a competition anywhere). Another lady from the group always posts things about her seven year old daughter who has OI. Her kid’s type of OI ranges between the severity of Type II and Type III–the type I have. Well, in one post she mentioned something that her kid had said. It was both adorable and sad. She said, “mommy I don’t get the hiccups. I get the breakups ’cause when I get the hiccups I break a rib.”

So I guess I don’t have bronchitis. I have breakitis. It’s part of the amazing package that is Ms. Mouse, a few broken bones here and there every couple of years or so. I don’t really count the ribs. Those happen all too often these days, for me at least.

What am I getting at? Well, it’s international Rare Disease Day and Osteogenesis Imperfecta aka Brittle Bone Disease aka Lobstein Syndrom is one of the rare “diseases”. I’d rather call it a condition–a rare bone condition.

I thought that this day would be celebrated every year, that it fell on the last day of February, but I just realized it falls exactly on February 29th meaning that it is only celebrated on leap years. I guess the gimmick is rare is only every so often? If you wanna know more you can visit the official website or check out the rare disease Facebook page.

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Here’s the first post I made about Rare Disease Day back in 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