The holiday depression has yet to lift, and my colon can’t seem to make up its’ mind: to poop or puke or not. One day I have diarrhea, the next I don’t. I’ll have a terrible 3-day flare, and then for a couple of days I’m fine. My roommate is…well…healthy people who’ve never been sick for long can’t understand chronic illness. I’m trying to get motivated again, but I’m feeling nothing except anguish. So why write, right? I don’t know. Why not? Where’s my pen?
Woke up at 10 ’til 5 this morning to make the usual mad dash for the bowl and I still had the runs (and for me, of course, that’s normal). Then I fell back to sleep and got up around 9 to make my first official bathroom run of the day (since I was getting up) and was extremely shocked by what happened – so much so that I had to scrawl a little poem in my confused glee:
Can it be?
Is that solid
stool I see
at the bottom
of the bowl?
Did that drop
from my butthole?
This can’t be –
what I see…
am I dreaming
Now a little
dance I’ll do…
I’m so proud
of that hard poo!
Yeah I know what you’re thinking: it’s crap. Crap about crap, no less, but I think it expresses well the diarrhea-less delight of the Crohn’s patient given a reprieve by the warden of his bowel-walled prison. I’ll probably have diarrhea again later, but for now I bask in the magic underwater glow of my colon’s latest production. Unfortunately, I’m gonna have to flush sometime:(.
There’s a certain strain of magical thinking that only the chronically ill can indulge in. It’s the idea that even diseases medically-known to be incurable will go away if we just pretend we’re healthy. Our mass media and popular culture encourage this delusion. It is akin to the belief among those on the bottom rung of the economic ladder – or even among the middle class – that to be more successful you just have to project an image of success (embodied most memorably for me by Annette Bening playing Mrs. Lester Burnham in the 1999 film “American Beauty,” who adopted the mantra “I will sell this house today!” in an effort to grow her real estate business). I practiced that for years (somewhat out of necessity – since I had no health insurance, and everyone knows you shouldn’t worry about things you can’t do anything about, right?), refusing to even talk about Crohn’s Disease, particularly about my painful and embarrassing symptoms. Then someone suggested that all aspiring (or – less charitably – failed) writers have blogs these days, even if only for the practice. So was born this passage that you are reading right now, and many others, in which I discuss my illness ( actually illnesses, since I’m also certifiably Bipolar). I’m not sure if I’m suddenly not afraid to write about it because I realize that a blog is like playing to an unimaginably huge room while the vast majority of the seats are empty, or because I’m older and (perhaps) less self-conscious in general. But I digress. The point is that I finally realized that you don’t get well just by acting well. I have Medicaid now, and I’m being treated with the newest medications for (in this case) Crohn’s, so I haven’t been hospitalized for almost a-year-and-a-half. I still don’t discuss my symptoms with most people, since, once you start waxing eloquently on the drawbacks of constant diarrhea there’s really nowhere for the conversation to go (even if there is somewhere for you to go nearby – and there’d better be ). That said, even writing about it in the midst of this vast blog-o-spherical sea isn’t easy. It can make you feel pitied, even if you’re not. It can give you the feeling that you’ve invaded your own privacy somehow. Not that there is such a thing as privacy anymore (how quaint!)… I don’t think anyone is naïve enough to believe that. People don’t seem to even want what used to be called a ” private life;” apparently they’re lining up in Cyberland to click away their right to privacy, entrusting it to people and companies known to be unworthy of that trust: yes, I’m talking to you Mark Zuckerberg. Personally I don’t do Facebook: it bores me, and I think it’s mainly for children, adolescents, and advertisers. I also may be the only person in America who has never tweeted anything, since I don’t feel the need to broadcast my text messages, and (as I’ve said before) I have never aspired to be or to have a ‘follower.’ Also, I’m not selling anything, and that has undeniably become the raison d’etre of ‘social’ media. But I digress. I’ve been living mostly on generic Ensure Plus, and that alone improves my condition considerably. The only fly in that nutritious ointment is this simple fact: liquid in, liquid out. So for the past few days I’ve rarely ventured far from the comfort and safety of my own bathroom. I can OD on Imodium and take a relatively long bus ride, if necessary. I just can’t – on many days – eat or drink anything until I get home. Try going through your day without refueling or rehydrating at some point while out of the house. It sucks. It majorly sucks, as the kids (used to) say. So I’m griping about it in the only way that I know of that probably won’t annoy or disgust anybody: digitally. When your body becomes the enemy, the mind can be your best friend. And it’s practice. For what I don’t know (yet).
- another shitty day (literally) (ghostlizard.wordpress.com)
- What are the side effects of crohn’s diseases treatment (wiki.answers.com)
- Complications of Crohn’s Disease (everydayhealth.com)
- Crohn’s still sucks… (ghostlizard.wordpress.com)
- When to Talk About Crohn’s Disease (everydayhealth.com)
- Battling Depression in Crohn’s Disease (everydayhealth.com)
What if this were you? This reminded me of why I started skipping school in the eighth grade.
Happy Tuesday, or whatever day you read this.
that is the digestion. Whether ’tis nobler in the gut to suffer the inflammation of outrageous misfortune, or to blow chunks against a sea of troubles and by so blowing end them. To hurl, to sleep”…” to sleep – perchance to dream : ay, there’s the rub, for in that vomit-sleep what dreams may come when we have gurgled up this mortal bile, must give us nausea.” Or something like that. Okay, okay… so it ain’t Shakespeare, but if Hamlet had had Crohn’s and gave his soliloquy while sitting on his porcelain throne, holding a double-lined wastebasket in front of his mouth (just in case), and emptying the contents of his entrails spasmodically between lines…well I, for one, would definitely have identified with him more. That really blows. Chunks. Like I just did. I’ll spare you the details (or is it too late for that already?). Suffice it to say that one can be too thin (if not too rich – how would I know?) but one can never have too much toilet paper. Seriously, ever.
This whole Crohn’s Disease thing is really kicking my butt (literally). I have completely lost all attraction to food. I can see myself shrinking by the day. I was supposed to prep for a CT scan tonight, but my transportation just called it off. I gave myself another painfully cold injection of Humira, and my labs are improving, but the last time I started losing weight like this I ended up in the hospital for twelve days. I was down to 112 lbs. then. I’m currently hovering around 130 (and I’m 5′ 11.5 “) and I’m starting to feel very fatigued. I’ve been putting off and rescheduling everything all week. I managed to walk the dog across the street to the preferred dumping ground of most of the neighborhood canines, and made it to the corner store (because the last thing you want to run out of as an IBD patient is toilet paper; I came dangerously close). I know Ensure would help, but it’s too expensive, so I settled for a Sport Shake or Nutrament or something. Now I have to reschedule the CT scan because my roommate has the bus pass and his boss-of-the-day (he temps) asked him to stay late. I feel like I’m just whining, so I’ll leave it at that.
Well, it’s the day before Thanksgiving (again?!? didn’t we just do this last year?) so I’m trying to be grateful. This is what I’m grateful for (in no particular order) :
1.Although some find the changing of the seasons at this time of year charming, I think that’s only true for about a four-day weekend. After that, winter becomes hard work, and that’s why I’m grateful I’m not shoveling snow : it’s 74o here.
2.My roommate is working at the moment, so it looks like turkey dinner is in the cards this year (last year it was chicken).
3.I’m on a new med this year (Humira), which seems to be working, so I won’t spend Thursday evening in the restroom. These days I only have to do ‘latrine duty’ in the mornings; on the best days not at all.
4.Last year the only person I knew in the building was my roomie, having moved in not long before the holiday season. This year I have lots of neighbors to say “Happy Thanksgiving!” to, even if I’m not really feeling it.
5.My head is a lot clearer than it was a year ago, since I was taking 600mg./day of Seroquel then, and I’m only taking 25mg./day now.
6.The lights are on (for now, at least).
7.I have Internet access at home, however slow the speed or bad the customer service (AT&T has problems dealing with actual people, apparently).
8. I have love in my life this year (corny, right?).
10. Medicinal marijuana laws.
I was shooting for ten things I’m grateful for, but I only stopped at 11 because 11 is one of my lucky numbers. I thought of lots of other things I’m thankful for: the people who are nice to me, the new books I’m reading, the beach, Internet porn…surprisingly, the list is endless, but only when I’m
in a good mood. Depression reduces this list to one sometimes: 1. I haven’t killed myself.
Strange how different the world is when you’re on the right antidepressants. It’s the difference between the condemned man and the child picking flowers far outside the windows of his prison.
I’m glad to be picking daisies today, instead of pushing them up from below. Good enough for me.
If anyone reads this today, I hope you’re grateful, too.