Today's inspiring post, along with some of my insecurities and embarrassments

Linked by my friend Sasha, this essay (originally posted in 2007) by Jesse the K is pretty great:

I want to live -- give me the chair!

All right, Jesse! I love this post. I also sat up straighter at this part near the end:

The down side is that some folks think they know something important about me when they see me roll by. The walking aids colored in the outlines of my invisible illness.

I doubt that I'll ever truly experience this (despite my own anxious and sometimes paranoid readings of people around me when I'm feeling sick or attempting to reach a bathroom in time), because it seems that the general trend for UC patients is for internal solutions. Many people still get the colostomy bag, and perhaps that's the more reliable surgical solution; I don't know. But the internal J-pouch was gaining popularity when I last read about it, and with the Mayo doing tons of them, I'm sure we'll hear more good and bad about it in the future.

Anyway - my point is that the way things are going technologically, I probably won't have to deal with multitudes of people daily judging me based on a five-second glancing assessment, you know? I mean, even when my disease is out of iron control I can still hide it pretty well. Once I had a crap-accident while at work. It was a former job, shortly after I was first diagnosed, so my medications were still a bit hit-or-miss when it came to controlling my disease.

Anyway, anyway, I was out in the relatively small stacks shelving some books. I'd been having little crampy

HEY HEY YOU THINK YOU CAN IGNORE US OR SOMETHING

gut rumblings all day (my gut rumblings tend to talk like a typed telegram without the STOPs if you couldn't tell), probably due to meds and diet fluctuations and my attempts to wean myself off coffee, and all of a sudden I could tell, dude, those rumblings weren't messing around anymore. They hurt like hell. They were all

FINE YOU WANT ACTION WE'LL SHOW YOU ACTION HOW'S THIS GRRRRRRRRRRRRRRRRRRRAAAAAAAAAAAAAAAAAAA

and then I squatted down to grab my stomach (to, ah, presumably make it stop hurting) and that, apparently, was exactly the WRONG position to assume in such a moment. Yes, indeed. And I'd worn my new gray pants, too.

To get back to the point of airing more of my embarrassing moments*, I was able to set down the books I carried, walk back to the desk and around behind my Internet-surfing coworker, back into the room where we kept our bags (and where I kept my extra pants), and then to the bathroom for an emergency cleanup session.

It's possible we could just chalk this one up to the distractive powers of the Internet, but my coworker did not seem to notice a thing. He/she did not say, "Hey Peppery, what smells like shit?" at any time during the rest of the evening, and did not behave any differently toward me during the rest of my time at that particular job. I had a horrible disease explosion in public, and (perhaps because of the lateness of the hour, the Internet sucking my coworker's desire for conversation, and the desertedness of the bathroom, well) no one was the wiser. Even at my wedding, when I was in and out of the bathroom every five minutes, again: no one noticed. No one's going to make snap judgments about me apart from my hair and clothing and skin color and presumed gender. (Just those tiny things, yep.) I know I write too much about passing for healthy, but. Honestly? What I'm blathering on here about, is that I feel lucky.

I try to keep track of these moments, especially when they concern the UC. They're pretty frequent, when you consider quality and availability of medical care, of drugs (no matter how much I bitch about side effects, etc.), of the people near me who listen. I am lucky.

Could it be I'm starting 2011 on a positive note? Shit. I'll have to do more navel-gazing to remedy that.






^{* Gotta make space for new ones, right?}

It's going to be one of those nights.

Hoo boy.

Today was my coworker E's last day. We ordered nine silver trays of Indian food from the restaurant down the street and stood on the sidewalk in the drizzle, waiting for our ride back. The smell alone (it crept all over me, I think that my coat is completely and irreparably [deliciously] smelly) was enough to get things roiling. But just to make sure I had two heaping plates of butter chicken, hot-hot eggplant and lamb curry. I like to play this little testing game with coffee, too. You never know. One day, the shits may not come.

Found an old article today about Lialda, the newest treatment for "active, mild to moderate ulcerative colitis." Mild to moderate means, I think, NOT pancolitis? But it's a once-a-day regimen, as opposed to the horse-pill-gobbling that Colazal necessitates. Side effects include:

1) Flatulence (really, how can they be sure about that with UCers? A. makes a point of telling me that my UC had NO exponential effect on my flatulence...)

2) Acute intolerance syndrome - which exhibits very UC-ish flare symptoms, so how you would tell, I have no clue.

3) Headaches, yo! Why do all mesalamine drugs cause this? I'm gonna leap and say it's probably not from an increase in brain power, but I've been wrong before. Wait.

And for some new information (to me) about "mesalamine medications."

4) "Reports of renal impairment have been associated with mesalamine medications. Caution should be exercised, and LIALDA should be used only if the benefits outweigh the risks." The fuck?

Luckily for all of us with chronic bleeding asses, Shire Pharmaceuticals (creators/proponents of LIALDA) has this nifty site, Managing UC, in order to better promote bowel care* and take care of their customers** while gaining a lot of insight into what your random IBD sufferer thinks about. (Today: chocolate, books, ass, in any order.)

It's funny. In my first library science course, we had to design and pitch something like this to the rest of the class, a faux pharmaceutical company database of their "patient" information. The biggest question we faced in the Q & A following our presentation?

"How do you keep this ethical, when you're a business and your patients are really your customers, and may be better off with a different medication?"

I am watching you, Shire. Your cutesy hobbity name doesn't fool me.



*Erm. My ASS.
**I dare them to call me their patient. Also, see *.

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