Placeholder habits for setback times

About 5 days into my 11-day incarceration at Cedars Sinai (IBD Block), my handsome new gastroenterologist dropped by on morning rounds, indulged me with some perfunctory flirting as he made notes in his charty-chart, and then shot me a stern glance over imaginary half-glasses.

"You know," he said, "it wouldn't kill you to get out and walk around a little."

I looked at him; I looked at the IV still attached to my arm. I looked down at my impossibly bloated belly and the impossibly bony legs just past them. True, I'd used those knobbly sticks to get us all to the toilet several times per day, about 32 times, according to the notes I was obsessively keeping, but outside the room? Down the hall?

He waved vaguely in the direction of the window and the glorious L.A. day it framed.

And the courtyard, out there. You can take the elevator down.

Well, alrighty then.

I do not recall how far I made it that first day, but I do remember the feeling of finally stepping outside the hermetically sealed hospital confines and into the reasonably fresh Southern California air. It was exhilarating, only more so: better than the greatest top-down convertible ride on PCH, better than psilocybin mushrooms on an Ithaca summer day, even better than Disneyland. And I love Disneyland.

I remember marveling at how sunshine felt on my skin, and how the sky sounded, and how each breeze carried impossible mixtures of coolness and warmth. I remember being astonished at how involved everyone seemed, rushing here and there. I dimly remembered what rushing was like, it is, after all, my factory-installed setting. But it seemed so crazy right now, to be rushing when there was this sun and this sky and this air. I felt not exactly sad for them, but tender, the way I always felt like the angels in Berlin from that old Wim Wenders movie. Like I was out of time and place, and could see things for now that I couldn't see before, and that I would probably have to fight to see again. While not as heart-stoppingly amazing, the experience was not unlike the bloody epiphany I'd had a few days earlier: a veil lifted or fallen or however the hell it is that veils make themselves scarce.

This is partly my roundabout way of saying I'm sick again. As in, fighting-a-Crohn's-flare sick. Don't worry, I've done it before, more than once. Successfully! Yes, we could quibble about how successfully, as there have been subsequent flares, like this one. But each time, I learn a little more about what I can and cannot do safely. This time was screamingly obvious, in hindsight: do not follow up two weeks of crazy prep and one weekend of excellent (but energy-depleting) work with an 800-mile roundtrip driving excursion punctuated by heavy social activity. Especially when you are almost 50 and immunocompromised.

But it is also in part my way of reminding myself not to let the dazzling Perfect that I see there, sparkling just out of reach, get in the way of the very much good that exists and that is possible in the here and now.

Can I handle a full-on, two-mile walk first thing in the morning? I cannot. But a leisurely stroll to the library and back later in the day, with a rest there to skim a book or three? Absolutely.

Maybe not my full Nei Kung routine, but 15 minutes of Horse Stance, like my teacher told me to do, I dimly remember, when I once confessed my all-or-nothing mindset to him.

And when those are too much? I walk to the corner mailbox to send a note, or do ten minutes of Horse Stance. Five, even. And if I were immobilized temporarily, I suppose I would lie there and think about walking, or reflect on what Nei Kung has done for me, or see if I could do crazy chi-stimulating things with my mind only yet. (Doubtful.)

Like an old acting teacher used to say, if the answer has to be "all" or "nothing," most of the time it's going to be "nothing." Placeholder habits are a surprisingly simple, surprisingly gentle way back from that kind of thinking. It can even be a game, dreaming up how to do just a little of this, a placeholder of that.

That's all I got today. Except, well, stay healthy out there, if you are. And hang in there, if you're not.

xxx
c

Image by kasrak via Flickr, used under a Creative Commons license.

The phlegm that says "I love you"

Back in September of 2002, I started drawing my colon.

I first drew it on the day after my second-ever colonoscopy, the day I was finally told how bad off I really was in unequivocal, Western-medical terms ("aggressive onset," white-cell count, colostomy, etc.). I continued drawing it once per day, every day, for months afterward, well after I was out of the hospital and back to work.

It's nowhere in the journal entries that precede the drawing itself, but I am fairly sure of the genesis of the sketching-as-therapy endeavor: several years earlier, during her first bout with cancer, my mother shared with me her own hoo-doo sicky-sick ritual. She did not draw, but she regularly visualized the diseased parts of herself¹ slowly getting better as cancer cells were politely escorted out by the contents of the chemical drip in her arm. This image was easier and more pleasant for her to fix on, she said, than the war-like one some people favor: This radiation is KILLING my cancer! This chemo is KICKING THE SHIT out of those mutant cells!²

I had no better ideas, so I did the same.

The first drawing is hastily done; my intestines look more like a really poorly rendered black-and-white sketch of the Yellow Brick Road cover than actual human organs, and there is nothing as specific and action-oriented as escorting going on. The next day, however, features a fair approximation of a colon, along with some very dynamic-looking action lines. By Day 6 (see above), the drawings are not only more specifically rendered, but more lovingly. The joint is lousy with hearts, for cryin' out loud! And on Day 11, I have the whole exit/recovery strategy meticulously mapped out: the meds and SCD-legal food, rendered as hearts, are waving at the mischievous buggies on their way out.³ To an actual toilet. (God is in the details, amirite?)

Whether or not you hew to the woo, there are some useful aspects to the practice of embracing an illness in this way.

First, it gives you something to do besides fret, nap, and watch Murder, She Wrote on an endless loop. I am way too good at fretting, way too bad at napping and even I can't watch TV forever. There was something very calming and focusing about drawing my colon every day. I'd reflect on the shape of it, add nuances to the exit strategy, draw a few more "good" bugs and a few less "teacher" bugs with each rendering. Plus, you know, super-nifty illustrated journal after the fact.

Second, reframing the illness made it much easier to get down with the slow pace of returning to wellness.⁴ Rather than looking at the whole thing as a "woe be me!" experience, I was able to look at it like a class, albeit a really tedious one with an unusual number of bathroom breaks.

Third, drawing every day helped to keep me in a state of gratitude. Because making the bugs my teachers made it impossible to feel completely angry with my disease. And because I chose to render the medicine as little hearts, I remained grateful to my I/V drip, my medical team, my health insurance, my amazing bed with the remote control that made it go up and down, up and down.

I bring all of this up because I'm sick right now. Not with Crohn's, but with an annoyingly trenchant and inconveniently timed cold. At least, for now it's a cold; one person I know had this whatever-it-is morph into bronchitis. I am not a fan of bronchitis. I quit smoking, some 23 years ago, because of incipient bronchitis.⁵ Not to mention I don't have the margin for error with antibiotics I did pre-Crohn's, in my blissfully sturdy 20s.

I am no saint. I can piss and moan and resist acting in my best interests with the best of them, even though the consequences of not doing so are intimately known to me.

And yet it is getting harder and harder to stay there. Hooray, middle age! Hooray for you, too, hundreds of hours of therapy, reading and purposeful self-reflection! I finally get that it's more useful, not to mention delightful, to treat myself with a little consideration, and to turn my attention to the nifty side of things. If I can't do my usual long, power walk, I am treated to a the beauty of my neighborhood in super-slow motion. If I cannot be out and dashing about in my usual can-do fashion, well, for the short stretches I do get out, I'm even more aware and appreciative of the fine weather we enjoy in Los Angeles. And slowed down thusly, when I am home I'm even more grateful for the serene snugness of my little apartment and its, no, really, insanely luxurious appointments.

I've written long ago and at length about illness being a useful, if painful, way to slow things down. I've spoken more recently (and far more briefly) about rotten things being a gateway to big love. But I still need reminding; maybe I always will need reminding. Slow is not a factory-default setting.

And so I move too fast and I curse before I remember to say "Thank you!" and slow down for a bit.

But I do slow down for a bit. Which is what we call a start.

Oh, and for the duration? Posting will be light...

xxx c

¹As the primary site was her cervix, there was also some kind of radioactive tampon she got to wear. Get your pap, ladies!

²Mom died just 18 months after diagnosis, but far, far past what the doctors had initially predicted for someone with Stage 4 cervical cancer that had metastasized to her lungs. She even went into full remission for a time, fooling us into thinking she'd be around for a good, long time. Alas, the cancer came back fast and aggressively, and in her weakened state, a state not at all enhanced by her alcohol intake, except from a relaxation point of view, I can't see how she could have fought it off. Watch the drinking, ladies!

³Western medicine is finally coming around to embrace the theory Dr. Sidney Valentine Haas and Elaine Gottschall put forth a heckuva lot earlier: that the source of the irritation that causes Crohn's is bacterial: a crazy, unchecked proliferation of "bad" bacteria that the guts of Crohn's and ulcerative colitis patients can't handle, which irritates the intestinal wall and triggers the immune response (your body attacking itself).

⁴I was very fortunate, I realize, to be returned to a state of wellness. I get that this is not the case with all illnesses, and I'm the last one to point the manifesting finger. You know, that creepy part of new-agey-ness that wonders, in the most inappropriately passive-aggressive, outrageously fake-compassionate way, what you did to bring this illness into your life. Uuuuuuuup yours, you "Namaste!" motherfucker. (One of these days, I really do need to write up that essay on the "Namaste!" Motherfuckers. I have far more contempt for them than I do other fringe groups one could name on the other end of the socio-political spectrum because seriously, they should know better.

⁵And I really, really liked smoking, so you know I must have really, really hated the idea of this bronchitis thing happening again.

How many Crohn's flares does it take to change a communicatrix?

If you've been following along on Twitter and Facebook, you already know that last week represented a physical nadir for me.

Not the Nadir, but the worst flare I've had in almost three years, since I went off the diet. (That would be the Specific Carbohydrate Diet, also known as the Diet That Saved My Life, or at the very least, kept me from getting a new asshole and/or a colostomy bag.)

Ah, free will! You are such a delicious, pernicious devil, aren't you? You step in to help me vanquish cigarettes in one fell swoop (and a jet trail of methane). You help me out of a job I hated, a marriage that wasn't working, a lawsuit no one was going to win. You help me build a mid-life acting career out of nothing but hope, sweat and yellow highlighter, you get me into therapy, you get me out of depression. In what I call your finest move to date,  you even pull me up from the depths of illness, and then, defying all logic, you impel me to gorge myself on the very stuff that will kick my ass back to the curb.

Seriously: what up with that? Would it not have been easier to just...oh, I don't know...help me STAY WELL than to, with additional infusions of will (and rest, and enough steroids to power a major league sports franchise for three seasons), pull me back out of it?

Ah, well. I take comfort in the fact that there have been three years between flares, and even more comfort that somehow, while I am unquestionably a Delicate Fucking Flower, I have healing superpowers. The Youngster commented on it once, a hint of envy and longing in his voice, and it was the first time I sat up and took note of what I'd never thought of as good fortune.

Before then, I'd concentrated on how much I hated getting sick or injured, not how marvelously well I tended to heal. Not that anyone wants to be ill, of course (although I suppose there must be someone, somewhere, who does, this being a mighty wacky world and all), but you know, if you've got to take your share, how great to know that it won't be for that long, all things considered.

I'm too old and too battle-worn to say "Never again!"; I was too old and too battle-worn even to say it two years ago, when I also fell off the wagon and bounced behind it with my face in a bagful of Kaiser rolls for a good stretch. Something did happen this week which hasn't happened before, though: I couldn't write, and I couldn't write because I was too exhausted, and that just about killed me.

I remember reading an interview with the actor Robert Downey, Jr. a little while ago where he talked about how he finally found his way back to the straight and narrow. It wasn't God or family or anything so noble as these that set him straight: it was the sudden understanding that there was something he really, really wanted to do (act well in shitty movies, apparently), and he didn't want anything else getting in the way.

I've reached the point where I can see how my health, or lack thereof, could stop me from doing what I want to do, which is to write, which for now mainly means writing here. Doesn't matter. The blog is my shitty movie, but I'm going to act the hell out of it. And that means no more cookies on the craft service table.

In the days and weeks to come, I'm going to take a cold, hard look at the goals I drew up for myself in 2009, and see where "Take Care of Self" fits in. Which, I suspect, it doesn't much at all right now. And then I will look at what must stay, and what can go, and start hacking away. As my buddy Merlin Mann says in the fine quote framing his fine treatise on the subject, "You eventually learn that true priorities are like arms; if you think you have more than a couple, you're either lying or crazy."

I've been lying. And I've seen crazy. And I'd like to think I'm done with both.

It's time to focus on how well I get well, not how sick I am now. It's time to measure carefully the time I have left, not bemoan what's been spent. It's time to get to work, even if the work is, annoyingly and paradoxically, rest.

It is time to address this business of writing once and for all, and to treat it as a business, with all the regularity, accountability and support a business requires. Maybe that means writing less here and more elsewhere. Maybe that means getting a mailcart job (although that the mighty and magnificent Sage Cohen has managed to write copy for others without losing herself gives me some hope for that road again).

Once again, it's time to change. Then again, try pointing to a time when it isn't; my 48-year-old, post-Crohn's, post-dysplasia, post-married, thrice-post-careered, peri-menopausal self would have quite a bit to discuss on the nature of change with my disease-free, virginal, premenstual schoolgirl self. It was ever thus.

I am beginning to believe that the difference between change happening to one and being at the helm of change is focus and attention. (Okay, that's two things, since when has this blog ever been about literal accuracy? Or proofreading, for that matter?) And, looping back to the many observations I've been having lately about followers of the fat man and the benefits of (OHJESUSNODON'TSAYITDON'TDON'TDON'T) meditation (CHRIST!), all signs are pointing towards it as something I kinda-maybe-sorta-oughta-definitely address soon.

Fine. First, yoga; then, the hard stuff. Where, you understand, "yoga" might just mean "yoga on the Wii." Just so we understand each other.

None of this is remotely sexy. And the only part that appeals is the thought that I might get to string together more hours and more days of feeling like I finally did today, only perhaps better, and with bowel movements. (What? Like this blog has ever been about good taste, either?)

I leave you now to contemplate your navel, or the mystery of the Universe, or the grocery list. And I am officially soliciting advice, god help me, on good, local-to-L.A./East Side yoga studios. Someone who'd teach like Havi, in the non-namaste-b.s. way: a Havi here, not there, who still teaches regularly (or really, really irregularly, my preference.) And don't even talk to me about that Bikram. Not gonna happen.

More soon, as I know it. As soon as tomorrow, or as later as...not tomorrow. And if you would, one final request: some part of your functioning body or brain, whatever it may be? Be thankful for it just a wee bit.

I'm not 100% sure on this, but I think they might talk to each other or something...

xxx
c

"Thank you, sir! May I have another!?"™, Day 08: Baldy

This is Day 8 of a 21-day effort to see the good in what might, at first, look like an irredeemable drag. Its name comes from a classic bit of dialogue uttered by actor Kevin Bacon in a classic film of my generation, Animal House.

In my family, we were not blessed with good teeth and gums, cancer resistance genes, chemical balances predisposing us to happiness, or a low tolerance for alcohol: we got hair.

I'm not talking nice hair: I'm talking great hair. Hair of the gods. Breck-Girl hair. Movie star hair. Curly or straight or frizzy or wavy, male or female, dark brown or red or blond (and eventually, perfect snowy white), whatever our particular flavor of hair, we have shitloads of it. The kind of hair that turns heads, you'll pardon the expression. That causes overheating in summer. Hair whose drying time alone provides a for-real all-night excuse to stay in.

Sometimes I would crab about my hair's unruliness or color. I went from beautiful, stick-straight blond hair as a baby to crazy, Roseanne Rosannadanna pubes as an adolescent. And in the Chicago weather that I spent most of my life in, hardier hair than mine has a mind of its own. But most of the time, I didn't give my hair a thought.

Until, of course, it started falling out.

The first round of thinning I attributed to stress and sympathetic hair loss. Out of the blue, my mom was diagnosed with advanced cervical cancer which had metastasized to her lungs. Well, it wasn't really out of the blue: that crazy alcoholic mistress of denial hid the massive swelling in her leg from the rest of us with her hideously frumpy long skirts for a long, long time. But it was a death sentence, and for the 18 months from DX to death, I was a mass of stress.

But after some time had passed, and I got over her death (and the deaths, in rapid succession, of my beloved grandparents), the hair came back. And stayed back, even through what I now know as my own long, slow onset of Crohn's disease. (For the record, I was not in denial about said onset, but the recipient of some borderline unethical care from a particular colorectal surgeon. Live and learn.)

In fact, I looked my absolute freakiest (I thought) when my weight had dropped to its almost-nadir and my crazy-thick hair was dyed almost-black for a play in which I was cast as a Bulgarian art curator. Photographic proof of said period above, from the only headshot session I ever had where absolutely none of the photos were usable. I wept when I saw myself in them.

I even hung onto my beloved hair in the hospital during the 11-day incarceration. The steroid drip I was on didn't kick in, hair-loss-wise, until I got home. And then, on oral meds, my hair started falling out in earnest. By the handful. It would fall out when I washed it, when I dried it, when I brushed it. It would pretty much leap from my head whenever and wherever. I distinctly remember my good friend, Mark the Carpenter, over to help retrofit my apartment during my invalid phase, coming up from a brief rest on the floor with a rat's nest of long black hair woven into his fingers and a look of horror on his face. Steroids and hair do not mix. And as long as I'm on them or any immuno-suppressants, it would now appear, I will lose hair.

My GI doc doesn't believe it. He sees plenty of hair still. And he is a man, grateful for any hair at all on his head. (For the record, he has a lovely head of hair and a handsome face to match). But I know. I am baldy, and that's how it is. My crowning glory is gone, quite possibly for good.

So what, you might ask, is the good in that?

Tolerance. Acceptance. Understanding. In the same way that my newfound muffin top has made me more tender-hearted towards people who might be carrying a few (or a lot of) extra pounds, my hair loss and the corresponding reduction in feminine beauty status has made me far, far more generous and accepting of the less-obviously beautiful. Don't get me wrong: I was never a raving beauty like my mother or grandmothers; but with makeup and effort, I could "pass." And even without effort, I'm rather ashamed now to count off the many blessings I took for granted.

No more. I both care less about things that mattered so much so long ago, and am more appreciative of what's left. I'm guessing that some of this is the gift of wisdom that time brings, but I also know myself. And I am about as stubborn and slow-learning a fella as ever was born to woman.

So thank you, my crazy, kamikaze hairs. Eventually I may have to shave you off entirely like the mens do. Let's hope that my ginormous head isn't as weird and lumpy as I'm afraid it might be.

Or let's hope it is. My, what an adventure in learning that would be...

xxx
c

Photo of me, circa July 2002, by Tom Lascher. Dreadful, large size gives you a better idea of how sick I really looked at the time.

French fries at the O.K. Corral: or, Telling Monkey-brain to go f*ck itself

Back in September of 1987, I met my friend, Karen Engler, for dinner in Lincoln Park. I asked her what was new and she entertained me with amusing anecdotes of her crazy job du jour.

She then asked me what was new; I said, "I quit smoking."

"Really!?! When??!"

I checked my watch. "6:30," I said.

She laughed and shrugged it off. I'd been smoking since before I met her, way back in my freshman year of high school, when I was just 14 years old. A nincompoop semi-authority figure furnished the contraband, Benson & Hedges Menthol 100s, which I smoked until I got hip to menthol's ghetto/pussy status, finally ending up where most hard-core smokers do: sucking down 2+ packs of Marlboros (both leaded and "light" flavors) per day, bought by the carton. Which was good, believe it or not, that was down from close to 4 packs/day.

There was no getting around it: everything about me identified with "smoker." My entire non-childhood persona, not to mention routine, was built around it.

But as I got ready to light that smoke at 6:25 pm, something flashed through me, or, more accurately, snapped. Partly, it was the very real projection of another seasonal bout of bronchitis. Partly, it was weariness, maintaining any habit so assiduously is exhausting. And just like that, I knew I was done. I don't know why or how exactly, only that me and cigarettes, we were over. I stepped on the trash can pedal, let go of the pack and that, my friends, was that.

Not that quitting was easy; to the contrary, every minute of every hour, every hour of every day, for the first three weeks was excruciating. I'd never experienced anything like it and hope I never will. (That goes for the flatulence, too, folks. No one ever talks about the extreme gastrointestinal upset that accompanies quitting when you're a heavy smoker. All I can say is keep matches handy. Lots and lots of matches.) And the first three months was pretty rough. And the next three years? No picnic, to be sure. But while quitting wasn't easy, it was simple, and it was clear.

Fast forward 19 years. Still a non-smoker, now a diet-cheater.

Here's me, shoving an entire slice of pizza down my gullet between Ocean and Lincoln. Here's me, burning through a roll of Rolos, a box of Smarties, a bag of Raisinets one by one (I'm a piece candy woman, not a bar candy one) like a chocoholic chipmunk getting herself squared away for winter. This is not the Me who used Will o' Iron to leave her hometown, her marriage, her career, her misery for Parts Unknown; this is crap. I hate crap.

What exactly is going on here!?!

It struck me in a flash: I hadn't a clue. It was time to get one. So I busted out a fresh notebook and made myself a list and a deal: write down the desired infraction and exactly what is going on in that brain of yours when you want to make it, then wait 15 minutes; if you still want it, knock yourself out.

I wrote the first retroactively, from memory, which was still pretty fresh. And I'd outlined the rationalization in detail for my pal, heathervescent, at breakfast that morning, anyway:

• "Toast @ breakfast"

• "I deserve it."
• "It's all I'm going to have 'bad' today."

Next, the current desire, fresh and fierce:

• want to order pizza

• "nothing in house" (...except stew)
• stressed!!! (jobs, underbid)
• I deserve it

Finally, I sat it out. 15 minutes, that was the deal. Only an odd thing happened as the minutes ticked away. Monkey-brain continued to want pizza; Big Colleen brain breathed a sigh of relief to find out it was only Monkey-brain, got up and started preparing some semi-convenience food she remembered Monkey-brain had bought at the store (Tasty Bites Eggplant whatever, along with homemade red lentil dal and cucumber raita.)

At this point, you are, if you're like me, wondering a few things. Since you are not me, and I had time to both ask the questions and answer them, I'll close the loop for you.

QUESTION #1: Wow. She had all that shit in the house?

Answer: Yes, I had all that shit in the house. Apparently, Monkey-brain only registered sad frozen reminder of bad stew experiment.

Lesson: in its relentless pursuit of food crack, Monkey-brain is nothing if not fierce.

QUESTION #2: Wow. She considers making homemade red lentil dal and cucumber raita convenient?

ANSWER: Yes. After two hard-core years of cooking every single thing but cheese from scratch, yes, I do.

Lesson: change takes a long time, until it happens all at once.

QUESTION #3: Wow. She thinks this one-off incident is somehow worthy of her longest and most weirdly formatted post in months?

ANSWER: Yes. Abso-fucking-lutely, for reasons which will soon become apparent.

Lesson: The Communicatrix knows more than you, and don't you forget it.

I'm laying it on the line, in black and white, or slightly gray and white, or whatever my CSS is dictating and your end-user device is capturing as you read this: the "snap" happened. I'm off the illegals*.

I suspected it two days ago but knew it for sure last night, when the lovely server at the Marriott Marina del Rey served me my breadless club sandwich with fully a half-plate of the most beautifully golden, sinfully fragrant, mouth-burning-hot-from-the-fryer specimens of thin-cut fries I've seen ever, EVER, and they sat, untouched, until our club treasurer showed up a half-hour later and (mercifully) polished off the pile in five minutes flat.

Me + a plate of hot, untouched fries = dunzo.

Next up, total global domination...

xxx c

Image by keso via Flickr, used under a Creative Commons license.

*Note to any SCD-prospectives out there: this does not mean I'm on SCD. I'm not yet ready to give up my beloved Americano, a rather liberal interpretation of weak coffee which Elaine Gottschall would likely have taken issue with, and I'm not, for the time being, going to worry about rogue illegals, the 2% floaters that creep into virtually every food served in American restaurants, even the so-called "legal" foods. If you are just starting, do not follow my example, do SCD full-out, 100%, like it says in the book. No f*cking around, kids, especially if you're doing any of that lovely bleeding out of your rectum or spending time around doctors anxious to sketch out the new one they're going to build you. I'm well, I'm almost fat, I'm on meds and I've been stable for a long time.

The root of rye toast lust

It's no secret that I've fallen off the SCD wagon, big-time. It started with espresso, the gateway illegal, over two years ago. Espresso, and a spoonful of some shameless hussy of a dessert by Suzanne Goin, who should have a mug shot up in the P.O., as far as I'm concerned.

The bad news: once you transgress at all, you are no longer an SCD-er. Any transgression, no matter how small, puts you back at Day One just as surely as a sip of Bookers kicks you to the back of the bus at Alcoholics Anonymous. There's no judging; it's just that in the absence of better researched reasons for why it does and doesn't work, SCD requires fanatical adherence to the canon of foods handed down from Dr. Haas and Elaine Gottschall. There are no sanctioned cheats. Not a one. Period.

And so.

Yesterday, at the colorist's, I appalled even myself. Of course, I was only publicly, officially appalled after my good friend, L.A. Jan (we share everything) clocked me shoving two, count 'em, two Butterfinger-type crap candy singles into my mouth Augustus Gloop-style. (I'm reasonably sure I at least took the wrappers off.) When she replaced her eyeballs in their respective sockets, she asked me what the f*ck was going on.

I mean, I'm not even especially fond of Butterfingers.

I'm still sorting it out, but I think the kernel of understanding lodged somewhere in the back molar of my consciousness looks something like "You are not the boss of me!" Or, as I put it to my pal, Heathervescent, between bites of generously buttered, 100% forbidden rye toast at breakfast this morning, "F*CK YOU, MOTHERF**KER! You are not the boss of me!"

So many years of sucking it up, coloring within the lines, being a good girl, stuffing it down. So much rage. So much fear. It's going to find voice one way or t'other. And "F*ck you, motherf**ker! You are not the boss of me!" is pretty eloquent, if you ask me.

I have a sense of perspective, of course: I'm not perched above the quad in a clock tower with a rifle, or bankrupting the kids' college fund at the river casino's ATM, or even skulking behind the Rite Aid with a Marlboro Red. But I hate having something other than me owning me, so I need to get to the bottom of it.

Step One is noting it.

Step Two is noting it and not giving in.

To Butterfinger singles yesterday.

Or rye toast this morning.

Or Pizza Hut Thin 'n' Crispy Pepperoni Lovers' pizza, delivered, lukewarm and fresh enough, to my door in something under an hour.

Well, one out of three ain't bad...

xxx c

Image by LynnInTokyo via Flickr, used under a Creative Commons license

Big Yellow Taxi

I'll be honest: I prefer those periods characterized by boundless energy and the fruitful activity that accompanies it to the doldrums. But I learn more from the latter.

Yes, once again, my colon has decided to show me who's boss. It's a benevolent dictator, really: provided I toe the party line, I get to keep my fine job, spacious apartment and weekend dacha by the lake. But when I decide to be a spoiled brat and assert my right to individual expression in the form of forbidden carbohydrates and intensely caffeinated beverages, I get my ass kicked. Literally.

The good news is I'll finally get a semi-scientific read on how well these toxic immunosuppressants work to keep the bugs at bay vs. the diet. I have The Good Insurance through the end of the year, so tomorrow, I'm scheduling what will be the last of my free-ride colonoscopies for some time. And since this is the first time I'm getting one when (a) I'm on meds for reals and (b) I'm mad cheating on the SCD, I'll finally have actual, visual proof of what my gut has been telling me (literally) for a long time: I do better off carbs AND meds.

Not that my beloved-if-blinded-by-Big-Medicine GI docmeister will agree with me. But since I will pretty much be my own health insurance for the foreseeable future, his vote doesn't count for much anymore...

xxx c

Photo by esselNYC via Flickr, used under a Creative Commons license.

Illness from the other side of the bed

Regular readers of communicatrix-dot-com know that roughly four years ago, I spent one delightful summer sliding into a severe onset of Crohn's disease: colossal weight loss, fever, diarrhea. (I know, I know, sexy!!!)

It's a long story, but the short of it is I was sick, brother: 11 days in the hospital followed by four months of bed rest to get to anything remotely resembling my pre-Crohn's-onset life.

Today, I was in the hospital for the first time since getting ill. I'm not sick this time; I was visiting a friend who is. Several things struck me about the visit, though, probably in large part because of the parallel experience I had four years ago on the other side of the bed:

1. Our current health system blows gigantic, acrid chunks

I know this isn't coming as a huge surprise, but for people lucky enough to stay healthy or even well-insured, it's easy to downplay or forget. My friend can't afford coverage, and had to wait until he was ungodly ill at both ends (severe respiratory illness and something like what I have, neither of which has been diagnosed yet) until he could be admitted.

I had great coverage and still had to wait 6 hours in the ER because so many people without coverage are admitted via the ER. (My fever was only 102.2ºF when I showed up; they told me I should have come before, when it was 104.4ºF. Yeah, and the night staff was on duty, and I was delirious with no advocate to accompany me. No, thanks: I'd like to keep my colon.)

I don't know what to do about any of this. I'll be interested to read Dave Pollard's chronicle as he goes through much of what I had to, since he's pretty smart and pretty Canadian. But our health care system? For all but a very, very few? Sucks.

2. If you're not feeling sick, a few days in the hospital will cure you of that

No rest. Horrible food. Except for the maternity ward, a dismal environment.

The staff at Cedars, where I was incarcerated, was great. They still couldn't do anything but stabilize me. (Believe me, I was and remain grateful for that.) Even my doctor, the sainted Graham Woolf, told me I might as well try going home to see what happened, since a lot of people get better once they leave the hospital.

3. If you're wondering what to bring, start with toilet paper

When you're pooping 36x/day, hospital tissue feels like 3M's finest 40 grit. Even relatively well butts are attached to sick bodies, so any bit of comfort helps.

Ear plugs are also hugely helpful, as is edible food (provided it's cool with the doc). If you bring a book, make sure it's light reading, both in terms of subject matter and weight. A TV Guide is really, really nice (you watch a lot of TV), as is lip balm (you breathe a lot of dry air).

And flowers are lovely, but if you're bringing them, don't forget the vase.

4. Stay well

The most obvious, but the easiest to forget. Be a fierce advocate for your own health before anything happens. Get your annuals, even if you have to pay out of pocket. It's more important than any phones/lights/motorcars/single luxuries. If you're just scraping by, I don't know what to tell you. Hit the clinic, hit up your parents, hit a bank (kidding...kidding...). Eat right. Move your ass a little. Don't take stupid risks behind the wheel or anywhere else.

Take it from me: the only trips you want to make to the hospital are as a visitor. And even then, only when necessary...

xxx c

Photo by katastrophik via Flickr, used under a Creative Commons license

Related links:

How to have a great colonoscopy The inside poop on the Specific Carbohydrate Diet A brief history of my onset, and a tribute to Elaine Gottschall

TAGS: Crohn's disease, SCD, Specific Carbohydrate Diet, IBD, inflammatory bowel disease, hospitals, medical-industrial complex, Big Pharma, patient advocacy

When pain is a pain in the ass

I know that patience is one of my Big Lessons, and I've accepted my Crohn's disease as one of my major teachers. What's been strange about this year, my fourth since onset, is how shockingly intolerant I've been of my sketchy health all of a sudden, after four years of putting up with its vagaries fairly well.

My beloved shrink gave me some good insight into this today. In general, she said, we humans tend to grow more and more intolerant of pain as time goes by. (I realize that this might sound absurdly "duh, hey!", but bear with me.)

You would think, or I thought, anyway, that the longer you'd lived with pain, the more inured to it you'd become. But now I wonder if most of what we get used to is the idea of the pain. With my Crohn's, for example, I long ago got down with the limitations and the grossness from an intellectual perspective: I suffer from exhaustion, weakness and gastrointestinal distress (and my loved ones suffer, too, from the contact high) more than your average, non-Crohn's-afflicted person.

But understanding something and getting down with it are two different things. Pain makes you a little crazy, I'm discovering, pain in all of its forms.

When it's pain that can be allieviated by a change in circumstances, pain can be good; a little mounting pain might finally impel you to get that physical or bolt from a bad relationship just like an accumulation of heat from a flame impels you to pull away your hand.

When it's a pain that's chronic, the process is the same, the pain becomes less and less tolerable with each recurrence, but there's no relief, no escape: just more pain.

There's no real answer to this, but there may be an upside: just knowing how chronic (repeated, unavoidable) pain works on the psyche might help me to be more tolerant and understanding of other people enmeshed in their own version of Crohn's disease. And I'm not just getting all Pollyanna in your face about this: I'll take any help I can get handling road-raged psychos and the rest of the urban-afflicted who seem to be more and more in my face every day.

Who knows? Maybe I can even extend a little of that kindness and understanding towards myself...

xxx c Photo by eddieburns55 via Flickr, used with a Creative Commons license

Not-fat girl*

I do not know what it is like to be fat; we run to the thin side in my family, probably in part due to the subpar assimilation of our diseased digestive tracts (Crohn's is known as a wasting disease, although there are overweight Crohnies out there).

So except for the stares and whispers when I am refugee-thin, I do not know what it is like to be reviled for being a particular size. Mostly, I pass for normal. Especially with creative layering.

But in the three and a half years since I was diagnosed with Crohn's and put myself on the Specific Carbohydrate Diet to help manage it, I think I have learned something of what my brethren on the other end of the weight spectrum go through every day, surrounded by what they know they can't have.

Lately, you see, I dream of bread.

Good, chewy bread with a hearty crust and insane tooth, dragged through a mound of softened butter, garlicky olive oil, salty taramosalata from Athenian Room in Chicago, with an order of Kalamata chicken (oh! the fries!) following hard on its heels and a draft ale from Glascott's next door to wash it all down with.

I long also for sushi, for cupcakes, for a gigantic platter of buttery naan to soak up a plate of vegetable korma. I crave John's-on-Bleecker brick oven pizza, McDonald's Extra Value Meal #9 (with a supersized fountain Coke), mac-'n'-cheese, Mounds bars and marshmallow Peeps. (Especially stale ones.)

What you might not guess is that I also want tabouli and steel-cut oats and quinoa and mostly, oddly, my old-favorite lunch: brown rice with tofu and broccoli. I want all of the things I now know I may never have again, these foods teeming with forbidden sugars and starches and glutens that feed the bugs that eat away at my intestine and steal my health, crumb by crumb.

There is no cheating on the Specific Carbohydrate Diet, because as Elaine Gottschall, its major evangalist, always said, in order for the diet to work at all, it must be observed with fanatical adherence. Any trace of sugar or starch translates into food for colonies of bad gut bacteria to thrive. Only after a full year symptom-free, we are supposed to try, if we are the gambling types, reintroducing small amounts of illegals to see how we do.

We do not, apparently, do so well.

I "cheated" on the SCD last year, occasionally at first, ramping up to full-throttle food slut over the holidays. While I'm 99% sure that a course of antibiotics provided the actual tipping point, I know that my own lack of self-care contributed directly to my current sorry condition, just as surely as I know all of those years of Greek omelette-and-fries lunches (preceded by corn muffin and coffee breakfasts and followed by tortilla chip and salsa dinners) contributed to the onset of the disease itself. I feel good when I eat well; I feel bad when I don't. Quod erat demonstrandum, no matter what my G.I. doctor says about food-disease causality.

If I were stronger-willed I could probably, after a long stretch of fanatical adherence to SCD, wing the occasional baddie. But I'm an addict, with an addict's binary decision tree. On or off. Yes or no. In or out.

So now I find myself feeling deprived in a way I never have before, having to figure out how to fill up the hole with something other than what I know would fill it. I realize that somewhere down deep, I always felt deprived; I just got to hide it longer. The fat girl, she knows all about this, I think. We're more alike than I knew, although having walked through the fire, she is probably kinder and less judgmental than I.

She is probably someone you would much rather have dinner with.

I guess this is some of what the Crohn's still has to teach me. First, I learned to be grateful. Now it's time to take a crack at compassion. (Patience, I fear, is an ongoing lesson that is going to take more teachers than some piffling inflammatory bowel disorder to teach me.)

I would rather take the lesson over a freshly-pulled Americano and a slice of apple pie. But I suppose that's why this particular lesson is mine to learn in the first place...

xxx c

*Post title and meditation on food after Judith Moore in her vividly told, gripping memoir, Fat Girl: A True Story. Read a sample here. Read why she wrote it here. Read a real review of it here. Get it here or here. Not pleasant, but highly recommended.

Photo by (lucky, lucky) kandyjaxx via Flickr, used under a Creative Commons license

Order up!

I have been getting better, but this intestinal healing is some sloooow going and you don't want to push it. It's kind of like going back to Baby Tummy. First, when you're in a flare, you literally get a big, air-filled, protruding baby belly. Super-sexy. Second, in the same way that it might be inadvisable to feed a baby one of those excellent Chicago kraut-'n'-pickle dogs with hot mustard and a side of chili fries, it is similarly better to feed baby belly things that are easily digestible on both the mechanical and heat indices.

Unfortunately, when you're on the Specific Carbohydrate Diet, your bland choices are even more limited. There are no breads, rice, potatoes, puddings, custards, muffins, English muffins, crackers, pasta, tofu, quinoa, milk, oatmeal, Cream-of-Wheat, Jell-O or pretzels. And, since the things that make those things illegal, sugar and starch, mainly, are present in minute amounts in most convenience food, there is also no soup, that mainstay of Baby Tummy cuisine, unless one makes it oneself. From scratch. Including the broth.

When you have baby tummy, the last thing in the world you want to do is make your own goddam chicken soup from scratch. Homemade "Jell-O" (juice and Knox gelatin), maybe. Chicken stock, no.

So life becomes very small and predictable. Omelette for breakfast. Hamburger and green beans for lunch. Banana in there somewhere. Maybe some (homemade) applesauce or (homemade) applesauce or (homemade) yogurt. Poached salmon, if I can find the wild-caught kind. (I'm not normally so fussy, but I get weird about genetically manipulated, pesticide-laden food when my immune system is being highjacked by 6MP.)

Which is why I freaked out when I went to my friend Kathy's house yesterday and saw her son's lunch. Or rather, smelled it. Broken up hamburger with peas and spinach, covered in ketchup, microwaved.

I thought I'd died and gone to heaven.

Fortunately, I already had some (homemade) ketchup, so all I had to do was load up on peas, spinach and ground sirloin, hurry home and cook it all.

As I've mentioned before, it was not ever thus, and it will not always be. My baby tummy will repair itself eventually, and be able to tolerate not only the full range of the SCD (which is not only diverse, but delicious and far better for you than the standard American diet), but the occasional illegal that creeps in here and there.

Until then? Slow is the new fast.

xxx c

Photo by dyobmit via Flickr, used under a Creative Commons license.

It was not ever thus

Here's the thing to remember when you have been sick or sad or otherwise sporting the cosmic "kick me, hard" sign on your back for a long, long time: this is not who you are.

You are not this collection of aches and pains that consume your body now. You are not this bundle of anger and fear and despair that you feel you are now. You are not these bills, these woes, these slings and arrows of outrageous fortune. These are things that are happening to you? That's just what they are: things that are happening to you.

Your essence lies deep within, possibly being tested to the limits of its endurance, probably pissed off, but there, at the heart of you, is the heart of you.

Have I been tested? Sure. Yeah. Have the tests been as arduous or lengthy as many of my brethren? Hell, no. For as lousy as my Crohn's has made me feel, I wouldn't trade places with anyone. A-n-y-o-n-e. The devil you know, and all that.

But I forget sometimes, and maybe sometimes you do, too. And sometimes when I forget, there's no one there to remind me: it was not ever thus.

So I will remind you and perhaps, the next time I fall down the well and can't see the light, you will lower down a basket with a snack and a comforting note to remind me: this is not who you are, this wet darkness, but something you're sitting in. Maybe you will even find the right length of rope or somesuch to throw down there so I can climb out.

But mainly, I hope you will be there for me, or whomever needs you in the moment, to make sure I do not forget:

It was not ever thus.

xxx c

Photo by Megro, via Flickr, used under a Creative Commons license.

Take good care of yourself, you belong to you

An acting teacher of mine used to get very frustrated with our class from time to time. Since he'd studied under legendary sonofabitch Lee Strasberg, he was very comfortable expressing this frustration, especially in the form of yelling and screaming.

One day, having hit his limit with some slacker inanity or another, actors showing up without the props they needed for their scenes, actors not showing up at all, he launched into us about hard work and commitment. About how we didn't have any, and about how we were kidding ourselves if we thought we were going to slack our way to any kind of real acting talent or real acting career without Doing The Work. And then, lighting on my trembling face, he said: "Of course, those of you who need to hear this won't...and those of you who are already doing all this are beating yourselves up for not doing enough."

My shrink had to give me a refresher course in this yesterday. For some reason, my response to being unable to perform at my usual level of energy and competence (i.e., being sick) is to beat myself up for being unable to perform at my usual level of energy and competence. I was gently reminded that when I am not feeling my pretty best, calling myself "loser" is probably not the thing for getting me back on track. For some other, completely coincidental reason, I wound up with a stack of really depressing (but good!) books recently, and was told in no uncertain terms to put them aside for now, along with other buzzkills such as extensive surfing on peak oil, and take up cheering, coddling things.

The gang war taking place in my intestine pretty much precludes tasty treats, but happy books and magazines and video entertainment are A-OK. The boys and I spent an hour of quality time together today, and, after a soak in the tub with something medium-trashy, I've been capping off my evenings with an inspiring book called The Art of Possibility.

And then sleep. Lots and lots of sleep...perchance some dreaming. About the time when the coddling can again take the form of long trips up the coast and crazy turns on stilts.

xxx c Photo of DELICIOUS cupcake from Clementine by Caroscuro, via Flickr, used with Creative Commons license.

(Crohn's) disease of the week

After a half-hour fight with my gastroenterologist last night, he finally agreed to put me on short-term meds to try and control the too-earthly delights I'm currently housing in my 5'2", 106 lb. (and rapidly shrinking) frame.

While we argue a lot, a function of our positions on opposite ends of the Western Medicine Cures All spectrum, we really do love each other. He calls me stubborn, I call him Graham and, despite my refusal to march with him in pharmacological lockstep, we've always come to some kind of mutually satisfying compromise, usually involving my taking some incredibly toxic medication for less time than he'd like and more time than I'd like.

This time, however, we're running into some unusual problems. This flare I'm in now, which we both agree has its roots in an overly-long, overly-strong course of antibiotics I stupidly took after some minor skin surgery, is manifesting itself quite differently than previous Crohn's flares, so much so that I'm starting to question whether I have Crohn's colitis or ulcerative colitis.

There's a lot of overlap in the symptoms (blood and diarrhea and fever and weight loss and the scent-of-the-dead flatulence no one discusses), and the way my disease presented initially, there was some question as to which disease I had. Frankly, as far as end-user experience goes, pain, medications with dreadful side effects, an illness one will never actually be "cured" of, this rose is pretty stinky, no matter what name it goes by.

Several of the treatments are similar, too: steroids, immunosuppressants, anti-inflammatories. There are more medications approved for use in Crohn's disease, but finding the right one for either disease is hit or miss.

So now I'm on another, milder course of antibiotics, metronidazole, used to kill certain "bad" bacteria in the gut which are believed to be a contributing factor to Crohn's disease. And, oddly enough, I find myself hoping I have Crohn's disease (there's no known effectiveness for UC treatment), so this antibiotic will spare me the hair-shedding, liver-bashing nightmare of the big gun meds like 6MP.

Me. Hoping I have Crohn's disease.

The world changes by degree, except when it changes all at once...

xxx c

UPDATE: I realized after re-reading this with some sleep that the juxtaposition of paragraphs made it sound like a geyser of blood and poop is shooting out of my ass at regularly timed intervals. Alas, no. If it were, things would actually be easier because we'd know what to put me on. As it is, I'm having the regular bowel movements of a healthy, high school football player, with no blood whatsoever. Just fever, aches and endless fatigue. In fact, the only thing that makes me sure this isn't just fibromyalgia kicking in at a late date is the ungodly flatulence I'm still dealing with. Really. I could kill a puppy with one of my farts.

Photo by Ga Music Maker via Flickr, used under a Creative Commons license.

One pill makes you larger

Thanks to my family, I have an interesting relationship with medicine, both the kind with a small and a capital "m".

In one corner, we have my (dead, workaholic) father, whose response to any and all corporal malfunction was to (a) ignore it and soldier on or (b) have something prescribed or excised and then soldier on. In the other, we have my (dead, alcoholic) mother, who was basically the same, only she thought the "(b)" part of the equation needlessly complicated.

Dad died nominally of liver failure but really of systemic decline from years and years of refusing to deal with his Crohn's disease at anything deeper than a symptomatic level. (He did not drink alcohol.)

Mom died nominally of cervical cancer that had metastasized to her lungs, but really of her outrageous refusal to tend to even the basics of personal wellness (i.e., the annual pap). (She drank like a fish.)

Given my illustrious family history, it's kind of miraculous that I'm hobbling along as well as I am with my own disease. Like all chronic illness, Crohn's is an up and down proposition: unlike something discrete (a cold, say, or a broken arm), it flares up on its own schedule, brought on at times by something you didn't know could trigger it (hormonal birth control), at times by something you did, but neglected, forgot (antibiotics, stress, Aunt Flo'). Managing it takes a sometimes delicate combination of vigilant self-care and willingness to accept outside help.

I have gotten much better at accepting help in the form of other people stepping up when I'm too tired or sick to deal. I am still wicked stubborn, however, about help in the form of medicine, mainly because the medicines I have to choose from range from bad (mesalamine, or as I like to call it "the hair loss drug") to worse (purinethol, or as I like to call it, "the cancer drug that also causes hair loss"). In between is the pill I both love and dread the most: prednisone.

Yes, prednisone. King-daddy of the synthetic hormones, that magic steroidal elixir responsible for Jerry Lewis's good looks a ways back. It stops the immune response, makes you feel strong like bull and blows you up like a human balloon. When I was released from my 11-day vacation at Cedars Sinai, I was on 60mg of the stuff a day. I put on 10 pounds in a day and a half. My good friend, Lily, had to bring me granny panties three sizes larger to accommodate my mystical instant tubbiness.

Prednisone is also the one drug that can hoist me out of a flare. I have a reserve prescription I keep around the house just in case. I've been eyeing it more frequently recently, weighing the costs of not only ballooning but turning my bones to butter and leaving myself open to whatever opportunistic bacterium or virus wants to wander my way. It's a deal with the devil in many ways: it works amazingly well, but each time you use it, you lessen its potential effectiveness the next, until you're taking Jerry Lewis doses.

This flare? It's different than the others (I've had two since my initial onset in October of 2002). I'm not losing weight at the frightening rate I have in the past. There's no blood or diarrhea this time, either, although the room-clearing gas has commenced (hooray!). Mostly, I'm just dealing with some low-grade fever, aching joints and a level of fatigue that forces me down earlier and earlier. Hardly the stuff of hour-long prime-time medical drama.

The thing is, there's no way of knowing if I can pull myself out of this with diet and rest or if I need the big guns. The Specific Carbohydrate Diet, whose miracle Crohn's-curing powers I've written of before (here and here), is good, but even its major proponent always said to work with medicine when you need it.

That's what I'm trying to determine now: need. How well do I need to feel, and how soon? How wise would it be to wait, and for how long? If I go the meds route, should I go on the long-term meds, too, or trust the combination of fanatical adherence to the diet and the launching pad of prednisone to do the trick?

This is an unusually personal post for me, I know. I suppose it's the closest I'll come to a public admission of addictive behavior (at least, I hope so). But here it is: I'm addicted to whatever is the opposite of change. Like my parents before me, I'd rather ignore what's right under my nose, currently, a thermometer that reads 100.2ºF, than deal with it.

I know why they did what they did now. They were afraid. Afraid of addressing the root cause of their poor health. Afraid of being called out as human beings trying to avoid the emotions of all human beings by hiding behind work, or in a bottle. Afraid that if they went in for help, they'd be told the inevitable: what you are doing, the way you are treating yourself, will kill you.

The sad thing is, it did anyway.

Fortunately, I've got my own number. It connects me to my G.I. doctor over at Cedars, whom I'll speak to in the morning about going back on the prednisone, and perhaps something longer-term afterwards, until I'm sure I can fly on my own power.

My. Own. Power.

xxx c

TAGS: chronic illness, Crohn's disease, Crohn's flare, relapse, medication, prednisone

How to have a great colonoscopy

Via a sad letter* in Cary Tennis's "Since You Asked" advice column on Salon.com, I discovered that March is National Colorectal Cancer Awareness Month.

As the recipient of no less than four six search missions up my asshole, I feel that perhaps I have some valuable information to offer those on the fence about whether or not to submit to the amazing photographic biopsy machine, and how to proceed once one does.

NUMBER 1: Take care of your asshole, don't be one

Starting at 50, you need to be screened. (Earlier if you've a family history of colorectal cancer; I was told to be screened at 40, since I'd had an uncle DXd with cancerous polyps.)

Yes, a colonoscopy is nothing but a big, fat punchline (for some people, anyway). Yes, it's daunting, the thought of having a foreign object shoved up your butt (for some people, anyway). Don't worry: if you follow some pretty easy steps, it's really a no-big-deal operation. Talk to your doctor and get a referral to a specialist who can give the exam.

One note: if you have any kind of gastrointestinal problems or family history of inflammatory bowel disease (Crohn's or ulcerative colitis), I'd suggest having them screen for that at the same time, and having a gastroenterologist do the colonoscopy rather than a colorectal surgeon; they'll likely do a more thorough job of screening for GI disorders.
But mainly, don't avoid a screening out of fear of horrible pain. Trust me, prepping for the colonoscopy is usually worse than the thing itself.

NUMBER 2 (heh, heh): Name your poison

How well you prepare for your colonoscopy will pretty much determine how easy the procedure goes. As of my last colonoscopy, there were three types of colon blow to choose from to ready your pipes for the camera:

The worst of the three is FLEET'S PHOSPHO-SODA, an over-the-counter formula available at any drugstore that will violently blow every last bit of whatever out of your intestines, cause horrific pain and cramping and generally make you wish you were dead. Looks innocuous; will kick your fucking ass. Pun intended, and NOT recommended.

Marginally better is Kool-Aid from Hell, also known as "GO-LITELY". This is a saline All of the flavors suck and you have to drink gallons of this stuff. I'm serious: gallons. In a very short span of time. It is much, much milder than Fleet's, but that's about all it has to recommend it.

Finally, there VISICOL, the brand name for a prescription pill one takes in combination with various glasses of water and fizzy drinks. It's not a party, and you've got to swallow an awful lot of them, but I've found it to be the easiest on my GI tract of the three methods.

Remember, the world of meds changes fast and furiously. And with all these boomers headed into the colonoscopy years, you can bet there will be further refinement of technique. ASK! Make your doctor explain the differences to you. Do a little internet research (I guess I don't have to tell you that if you're reading this). You are your own best advocate.

NUMBER 3: A little extra prep pays off huge dividends

Your doctor (or his assistant) will give you a list of things you can and can't eat right before the procedure. If you know what's good for you, don't stop there. Give yourself at LEAST one additional day of extremely light eating before the day you're actually required to, especially if you are one of those people with a slow transit time (i.e., you don't poop a lot, or tend towards constipation). Despite my Crohn's, I've always been one of those people, and believe me, the evacuation process is a helluva lot more pleasant when the purgative isn't blasting its way through the intestinal equivalent of bedrock. I recommend salads and smoothies and broth, along with as much water as you can stand.

NUMBER 4: If possible, schedule first appointment

Due to the mild sedative you'll be given, you're not even allowed water for several hours before the procedure. Combine that with the purgative and lack of nourishment your body has dealt with over the last 24 hours and you want to make sure you spend the minimum amount of daylight feeling like you do. If your doctor offers an 8am appointment, take it; you'll do most of your hungry/icky time asleep, and won't have to worry about expending a lot of energy that you don't have.

NUMBER 5: Lay in a supply of eeeeeasy foods (and videos!) for afterward

You will probably be a little gassy and uncomfortable afterwards: all that colon-emptying creates a lot of residual gas; in addition, they sometimes blow air up your colon to get a better look. You will get hungry anyway, and believe me, you don't want to give your tummy anything challenging or heavy for a day or so afterwards. Again, the facility where you have your procedure done will probably give you a list, but non-heavy soups, smoothies and other "sick" food are a good bet.

You will probably also be not your shining best for the rest of the day. Try to take it off completely, or if you must, only really light work from home. I'm sure there are some hardy souls who spring right off the table and are ready to chop wood or bury the competition, but really, that gas can be ba-a-a-ad, and a day and a half without real food (by the time you're home from the procedure) can make you weak as a kitty.

NUMBER 6: Follow up!

Your specialist will probably go over the visual assessment briefly in the recovery room; you'll get the in-depth results later on. If you're not used to talking to doctors, consider bringing someone along with you to actually hear the news with you and ask questions. Barring that, do a little research, bring questions and make sure you understand what your doctor is telling you. Write it down, if you have to. I know it sounds weird, but we have an uncanny way of not hearing what we don't want to, or at the very least, minimizing it. I'm convinced that if I'd had someone with me the first time I'd gotten my c-scope results, I would never have suffered the violent onset of Crohn's that I did.

That's about it. Please remember, I'm not a doctor and none of this constitutes medical advice. It merely represents the sum total of my experience before, during and after having cameras shoved up my heinie (which is not inconsiderable).

Good luck, and don't forget to ask for a picture!

xxx
c

*You may have to watch an ad to read the link if you're not a subscriber.

UPDATE 7/21/08: After two less-than-great preps with Visicol and a similar prep drug, I'm back to endorsing the Phospho-Soda. Basically, there's no fun prep, but I think this is the cheapest and least awful of them.

UPDATE 5/30/09: Phospho-Soda has been taken off the market.

PHOTO of my beautiful colon by Dr. Graham Woolf, G.I.

LINK: National Colorectal Cancer Awareness Month

The inside poop on SCD

As I was grocery shopping for what seemed like the 14th time this week, it occurred to me that I haven't ever gone into much detail on what day-to-day life on the Specific Carbohydrate Diet is like for Crohnies (and UC patients), most likely because way back when I started this here blog, I was already down to about 95% SCD-compliant, which, as any true SCDer will tell you, means you are not actually doing SCD at all.

SCD, you see, requires what its major proponent (the late, lamented Elaine Gottschall) called "fanatical adherence". Since it's predicated on eliminating every rogue bacterium in the gut, and since rogue bacteria can have a company picnic on one potato chip, there has to be a zero-tolerance policy towards fucking around. After all your symptoms are cleared up for a year, there's cautious talk about introducing "illegals", but most people on the SCD choose to remain on a modified version of the diet indefinitely, since it's way healthier and they're way scared of a repeat on the room-clearing gas and projectile diarrhea that brought them to the SCD in the first place.

Initially, my few cheats were small, but big: a half-piece of particularly toothsome bread, something I hadn't tasted in 2 1/2 years, on an early date with The BF. A lavender cupcake at a friend's film opening two months later.

But then I hit on what I should really use my cheat allowance for: dealing with the rogue illegals that turn up in virtually all restaurant food, no matter how 'clean' you try to order. Restaurant dining becomes more enjoyable by an order of magnitude when you do not have to grill the server on every, no, seriously...EVERY ingredient. In the steak. Or the steamed spinach. Or the "absolutely plain" house vinaigrette. Because I can almost guarantee you, that "absolutely plain" vinaigrette will have a minimum of three to five non-SCD-compliant ingredients which, in the early stages of recovery, could send you running for the toilet.

Everything was going relatively well (no pun intended) until last December, when I decided to get jiggy with the starches for the holidays. Mind you, my recent transgressions, an entire piece of rye toast at breakfast AND a forkful of potatoes AND a salad with Thousand, all in the same 24-hour period, were nothing compared to my old, "thank-you-drive-thru" ways. But a little too much fast & loose, plus a heavy round of antibiotics after some incredibly minor skin surgery and I was done fer.

So now I am back to square one, at least as far as the diet is concerned. Everything cooked and peeled. Nothing "challenging" like, oh...say...peppers or mushrooms or, heaven forfend, onions. After almost knocking myself out with my noxious wind after ingesting a stray piece of onion in last Saturday's steak dinner, onions are off le menu for awhile. Along with steak.

It is not all bad, though. Tonight we are having baked acorn squash, sautéed baby spinach and bay scallops with shallots in a butter and wine sauce. (Smaller member of the onion family = smaller farts.) There's a vat of homemade applesauce in the fridge (because the commercial stuff might contain sugar), along with homemade yogurt (because the commercial kind definitely contains lactose) and leftover homemade chicken stock (because the commercial kind contains, among other things, starch, stabilizers, gums and the dreaded catch-all "spices").

Collectively, though, they represent dozens of man-hours of shopping, peeling and cooking. That is the hardest thing about following the SCD: finding the time in which to do it. With planning, you can really streamline operations, but the bottom line is it much, much harder to make everything from scratch than it is to 'cheat' with canned broth, pre-made yogurt and a thousand other modern convenience foods. When I'm on SCD, my convenience food is stuff I've made in bulk, portioned up, and frozen.

On the other hand, if you want a lesson in patience, humility and gratitude, you'd be hard-pressed to find one better than fanatical adherence to the SCD. Barring subjection to a major natural disaster or life-threatening illness. And with the worst of Crohn's behind me (there's that ass-punnery again, dammit), maybe it's good to have a little refresher course in the difficulty of day-to-day living for most of this planet's inhabitants. At least I have supermarkets, and a car to drive to them, and the relative security of knowing I won't be shot at while shopping for them (although that graffiti-tagged car in the Vons parking lot this afternoon shook me up a little).

My complaints are tedious and few, and I tire of the whiny voice in my own head as I head out for the store yet again to get what too many people would weep with gratitude over being blessed with.

And so to dinner. And, after we wail through the leftovers, to the grocery store again tomorrow, I'm sure. I've been craving muffins, you see, which can only mean one thing:

Muffin cup liners...

xxx
c

PHOTO: Ungodly, surely SCD-non-compliant deliciousness Cooking of Takoyaki by tab2_dawa via Flickr

Things change, especially in my colon

This was supposed to be a post about a surprisingly fun and interesting college alumni event that I attended last Thursday.

It was also supposed to be posted last Friday, maybe Saturday, at the latest. Because it really was a fun and interesting event, complete withon a cool seminar delivered by a lively speaker in a spiffy venue with bitching food and bev, which, frankly, I think is some weird, Cornellian point of pride because of that hotel school they've got.

However, as long-time readers of communicatrix-dot-com well know, I have Crohn's disease, which basically means:

1. My colon is a tyrant
2. Like most tyrants, is willful, capricious and wildly oversensitive
3. My colon likes to exercise its supreme power over me at the most inconvenient of times
4. In the war between posting and colon repair, [my colon always wins.]*

As much as I seem to rattle on about personal stuff here, I really keep the bulk (ha, ha, I said "bulk") of my personal shit (ha, ha, I said...oh, never mind...) private. Because really, how sexy is it to go into the gory details of your life when you're in the 45th year of it? You catch my drift.

Anyway. Major fires have been put out. Pesky low-grade existential crisis lingers, but all hands are back on deck, er, in L.A., safe and sound, which has done wonders for my peace of mind, which, in turn, has done wonders for my lower intestine.

But I would be remiss if I did not take this opportunity to, one more time, plug the wonders of the Specific Carbohydrate Diet, which continues to be the single greatest thing I've ever done for my intestinal health, and possibly my health in general.

It's not an easy diet to follow (quick: give up sugar, starch, and all even minimally-processed food!). I'd strayed from it over the last year because, ironically enough, I'd been feeling so good. But as anyone with Crohn's or UC (or celiac disease, or IBS, or other pesky intestinal illness) will tell you, stress is a huge trigger for flare-ups. And for me, flare-ups are only stopped with the double-edged sword that is prednisone, king-daddy of the steroids.

Thankfully, five days back on the diet with fanatical adherence and things are looking up. I have a goodly portion of my energy back, and no longer feel like I might have to drop to whatever horizontal surface I'm on to nap. (At one low point over the last few days, I actually curled up in a ball on a closet floor for 15 minutes, rock on, party girl!)

Which is good, because right now, I've got to drive a motor vehicle downtown and beg the cold-hearted DMV employees to overlook a mailing deadline I missed while I was passing out on closet floors.

So, posts on goal-free living and other fun and exciting stuff soon. Meanwhile, if you see a middle-aged woman passed out on the floor of the Metropolitan Courthouse, for god's sake, don't give her a candy bar thinking it'll help...

xxx c

*Left bracketed part out in the original post. See? My colon really does rule.

Illness as meditation

I had a smallish chunk of communicatrix carved out of my shoulder yesterday. It's not a particularly alarming event; given I get more sun walking from my front door to the car than most of my ancestors got in a lifetime, these occasional hinky patches of skin are to be expected.

What is alarming, and annoying, and frustrating, is having the lines of my physical limitations redrawn so abruptly. Like any 'illness' that descends swiftly, there's no time to adjust from being the together, go-go me who can burn through a to-do list with amazing speed to the sad-ass gimp who is continually making adjustments and compromises to get by. Instead of just reaching for a can of tuna, my Quasimodo-pressure-dressing hump and I have to wait for my left hand to drag the stool to the shelves, step up and grab it, then hand it off to the (gimpy, for all intents and purposes) right hand.

One of the most annoying aspects to my five-month recovery from Crohn's disease was having to sleep on my back. (There was simply too much gastrointestinal activity to risk stomach sleeping.) Last night, my hump and I had to sleep not only on my actual side, propped up with pillows all around like a baby on a king-sized bed, but on the wrong side. Suffice it to say it was not one of my more restful nights, and was mainly filled with odd dreams of attending a veddy British country wedding, with lots of pomp and changes of clothes. What-ever.

On the other hand, the hump is a good reminder to see things differently. Of necessity, I must slow down. And it's prepping me for the even more annoying task of being almost better: while the hump comes off tomorrow, I still have to baby that shoulder for the next eight days if I don't want to rip it all open and bleed on the furniture. Having a governor preps me for driving without one, which is a good thing when your tendency is to live your life with the pedal to the medal.

So I'm going to an audition today as a meter maid with a hump; after that, I'll head over to the printers (slowly) and play graphic designer with a hump. I suppose later on, I'll see if I'm up to play humpy freakshow at the Trader Joe's, and figure out what kind of dinner me and the hump can put together without using the cast iron pans. (I don't know; I'm thinking scallops in some kind of lime, chile and butter sauce.)

And in between, or during, I suppose I should say, I will probably see things I haven't seen, and hear things I haven't heard, just because I've slowed down enough to see and hear them. With every move, if my experience so far is any indication, I'll appreciate the movement I do have so much more, just as when I was imprisoned in the IBD ward at Cedars, I relished the few hundred feet I could walk outside in the courtyard every day, rolling my IV stand alongside of me.

Audition. Printer's. TJ's.

Hell, they're as good as Disneyland, when you get down to it.

xxx
c

A Song of Thanksgiving, Part 6: My Crohn's Disease

Have you ever been sick? Really, really sick, the kind where you and God enter into heavy negotiations?

Do you remember how for the first few days you feel well after being sick, you appreciate your health for what seems like the first time, ever?

That's what happened to me after my acute onset of Crohn's...times ten. I've written about it before, but it merits repeating: the gift that my disease gave me was nothing less than my happiness. I have nothing but gratitude for my illness (and the people who helped me through it, too, of course).

Not that I'd wish it on anyone else. One of my main hopes in writing this blog is that I might help one or two other people find their own happiness without having to go through quite as much blood and toilet paper.

But on this day of Thanksgiving, I think it's appropriate to give the biggest cosmic shout-out to my wacky colon for all that it gave me. And, um, continues to give me every single day, with delightful regularity.

xxx
c