“It’s essentially a bag full of (excretion).”

Crohn’s disease sufferer from Halifax brought to tears by Calgary airport security

While passing through a security checkpoint shortly after 9 a.m. Monday, Maher set a metal detector off because she had accidentally left her watch on.

But she said the airport screening staff immediately pointed to a bag on her hip, claiming it was full of money.

Not to make light of the situation, because

A) what a bunch of assholes, and
B) Even worse to learn that apparently airport security is shitty all over, and
C) I can identify with the helplessness this gal obviously felt, and it sucks.

But if I ever have a colostomy (and yeah, it's probably somewhere in my future) I sure hope I get one of those money-excreting ones.

Crons, Crones, Chrons, Cronhs, etc.

Radiolab has a new podcast up!

Guts

Yep, it's all about our glorious bowels. When one of my old college buds linked to it I clicked over to the site, thinking, damn, they might just do a story on IBD. And I wasn't disappointed: part 3 of the podcast is all about a dude who has Crohn's disease.

It never fails to amaze me how many people misspell Crohn's disease, but even as a self-professed lifelong spelling-and-grammar freak (yes, I WAS that annoying kid who won a lot of class spelling bees. It was all for the fame, glory, and whores, you understand) I must admit it's a strange, unintuitive word. But then, it was named after a person, so.

I get a range of responses when I tell someone I have ulcerative colitis. Usually I have to preface "ulcerative colitis" with "a chronic disease" so that people don't think I'm talking about a class or current events, but after that I get some knowing nods, some pretend-knowing nods, and some What's that, exactly?s. Occasionally I get a JFK buff who tells me all about Kennedy's intestines and steroid use and whatnot. But I think both diseases have a ways to go before they're household names. I'd rather UC/CD/IBD didn't become such common diseases just so everyone knows what the hell I'm talking about.

Really I just want more attention for ulcerative colitis. Crohn's, Crohn's, Crohn's, big deal.

In any case, the Crohn's part of the podcast reminds me a lot of how I felt during my surprise 2010 flare. I'm fist-bumping (fistula-bumping?) you through the computer, guy.


In other news A. and I are watching Breaking Bad. We're finishing up season three, and Bob Odenkirk is KILLING me.

It's nice to only pretend

A. and I tend to fit the Typical Relationship Arguments spectrum pretty tightly: in other words, we have routine bitch sessions about how broke we are. But while we are living only a step or so above paycheck to paycheck right now (I'd say maybe paycheck-and-a-half, until tax time rolls around), we're not completely broke yet.

So when Daughter Number Three linked to this interesting online poverty simulator:

Spent

I was fascinated. Basically it's a quick and dirty view at trying to survive for a month at the poverty line. In my attempts, I tried both the temp and warehouse jobs, and I tried to be realistic about health insurance: I opted in both times, because the costs of my current UC meds and checkups and procedures would knock me out of the simulation long before Day 3. Interesting that there's no discussion of pre-existing conditions, but as I said, it's quick and dirty.

Overall, though, it served as a reiteration of how lucky I am to have a decent job making decent wages with two options besides a car for transport (bus and bike), and that I'm allowed to get cheap(ish) health insurance without paying penalties for having a malfunctioning body. It also helps to not have a kid. Funnily enough, having my particular incarnation of ulcerative colitis is probably cheaper and less stressful.

Signal boost

Hey, look, it's another lady with a chronic disease! (Other than me. I'm shocked, shocked, aren't you?)

It's So Not Sexy, a blog by Maurissa Tancharoen. Looks like she's just started it up - I look forward to reading more.

I gotta say, I can't identify with her former hot pants-everyday look because I'm not toned, nor have I ever been a dancer. (I dance, yes. But there's no way anyone would pay me or pay to see me do it. YET. Rule 267,800 [of the Internet] hasn't been invented yet.) I did used to go shopping wearing only jeans, flip-flops and a flimsy Winnie-the-Pooh tank top my sister gave me one Christmas, without a bra. But that was the extent of my sexy-flaunting, ulcerative colitis-free youth. No regrets!

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?}

Romancing the toilet

From Smart Bitches, Trashy Books:

Whisper Falls, by Toni Blake

The heroine has Crohn's. It's a romance novel, and the heroine has Crohn's. I think my brain just imploded with happiness. Way to go, Blake. I don't read many romance books, but I'll be checking this one out, because, dude! A heroine with Crohn's! She will probably get, then lose, then get the guy! And all without a hilarious diarrhea scene, I bet - read and learn, CNN. Especially in light of that stupid segment, the fact that this book exists surprises the hell out of me, and makes me want to find others. List time:

1. Whisper Falls
2. Um. Yeah. Any suggestions?

And I'm not talking about the My illness and my long, inspiring climb to recovery, let me show you it type of memoir-book. I'm not knocking those, but that's not what I'm looking for here. I'm looking for fiction books that have main characters with IBD. That's it; I'm not pulling out my snobby distinctions, such as

(a) is the disease purely a plot device, in the mode of Lurlene McDaniels and the Please Don't Die of Cancer/Of Lupus/Of Wasting Disease, Mommy/Daddy/Sister/Girlfriend books?

(b) is the disease mentioned once in passing and then never again despite how much it affects every day life? Or, my favorite,

(c) is the disease mentioned only in the form of a token/stereotype character (e.g. Gay Best Friend, Sassy Black Friend) who serves as an awakening or an inspiration to the main character? See also (a).

Provisionally:
(d) does the character with the disease miraculously recover thanks to whatever fad diet/treatment the author read about before writing the book?

Jesus, I'm just pulling that last one out of my ass,* I seriously doubt anyone could pull it off or would attempt to, these days. It's much more romantic to magically cure cancer, anyway.

But back to Whisper Hill.** With regards to that front cover blurb? "Intoxicating and addictive?" Bleeech, please. What about delicious? Is it scrumptious? Inebriating? Lickable? Christ. I wish someone would start blurbing "Unputdownable!" Now that, coupled with a good bout of dehabilitating diarrhea, I can get behind.




^{*Like everything.
** Not so much as a whisper as a flatulent BANG, supplies my sad, poop-obsessed mind.}

It's probably too late to AVOID those chronic diseases, but still...

Nifty article from NY Times, Jan. 28, 2007.