Take heart those of us who can no longer run thanks to Colitis (or a Colitis flare). I read in the March 2014 edition of Marie Claire that running makes your face sag! All that high-impact bouncing and jouncing stretches muscles and ligaments, apparently giving us the face of a Basset Hound. The blog Walk Jog Run confirms it. The condition is called “Runner’s Face.” It’s recommended we use an elliptical, or try other low-impact exercises instead. But let’s not kid ourselves – if vanity is our goal, we’ll ace our marathon-ready competitors. We can’t eat much of anything, weight loss is par for the course. While our intestines might look like a war zone, we’ll (outwardly) look Utopian.
It’s not glamorous. A Friday “off” together involved one 4-hour Remicade treatment at my new doctor’s Infusion Unit. I was chair-bound, pinioned by my I.V., and my husband made use of the time by getting some work done. Still, we had fun. He ate the gluten-loaded cookies they left for us, we chatted, and when he had to make a call I got to read the magazine I’d saved for this very occasion. Afterward we went out to lunch and ran some errands. It’s nobody’s dream romance, but it’s reality. It’s making the best of the situation, it’s carving out quality time wherever we can find it, it’s being there together and there for each other. Do I envy my friends’ Facebook posts showcasing their exotic and adventure-filled dates with boyfriends/girlfriends and husbands/wives? Sure. I sigh wistfully, imagining that one day I won’t have to post photos like the above to let those closest to me understand what I’ve been up to. My love life isn’t all ski trips, Broadway shows, glitzy new restaurants and beach vacations. Maybe at one point it was, but things change, and now “dates” are squeezed in around doctor’s appointments, infusions and the out-of-nowhere day where my UC wants to keep me couch (or toilet) bound. Social life? Um…well, it’s hard to plan for the following weekend when you have no idea what you’ll feel like by Friday. Will you even have the energy to want to eat out, never mind to go dancing? Will you have energy enough to even want to see your friends if they opt to come over? It’s tough for the partner with Colitis, and I’ve begun to understand that in many respects, it’s tougher for the partner without it–a.k.a. The Saint. When you exchange vows you hope for the best, and while you know that shit happens, on your wedding day you assume the difficult times are only for other people, or at least older people. On your honeymoon you think paradise will last forever. You can hardly conceive of a marriage that isn’t white picket fences, champagne bubbles, lazy Sunday mornings, cruise ship balconies, puppies and roses. And then the universe smacks you upside the head and tells you to wake up. It piles on vet bills and taxes, student loans, car accidents and injuries, blizzards and hurricanes, long hours and layoffs, stress, stress and more stress–and even sometimes Ulcerative Colitis. So here’s a shout-out to my wonderful husband for caring enough to want to be there with me, for making an otherwise boring treatment fun, and for having my back when the going got (and stayed) tough. You are one in a million, babe.
George Saunders once wrote, “There comes that phase in life when, tired of losing, you decide to stop losing, then continue losing. Then you decide to really stop losing, and continue losing. The losing goes on and on so long you begin to watch with curiosity, wondering how low you can go.” This may be a huge presumption, but a lot of people dealing with IBD (and other diseases) feel that way. You go there, leave it briefly, and return. I’m there now, booted back into the spin cycle because the odometer turned over. Another year older, another new problem, and no relief in sight. Another reason to wallow and wonder what’s the point of all this? My get-me-to-remission-already journey has been disgusting, edifying, discouraging, inspiring. Now it’s, like Saunders wrote, kinda fascinating. How far off the tracks can you derail? If life is what happens while you’re making plans, what happens when you’re just trying to make it back to your life? What’s the meaning of all this, anyway? We were put here to develop Ulcerative Colitis and…?
My title is a little sensational, perhaps a little grandiose, but I’m trying to make a point–small things make a difference. What might seem stupid and insignificant to someone else could have a significant impact on you, or vice versa. A ripple effect, if you will. Several months ago, on the Great Bowel Movement’s “Flush My Secret” page, I came across a post by someone who said since being diagnosed, they “despise wearing thongs.” I used to feel the same way about a lot of different types of apparel, so their sentiment resonated with me. I empathized. But a few months in, as the blank page of my future life began to resemble one of those paper snowflake cut-outs, I realized I had to stop resenting, stop imposing limitations, and most importantly, stop eliminating all of the joys–if you can call thongs a “joy”–in my life. (And nothing against the person who posted that. Everyone is entitled to feel what they feel, when they’re feeling it. Rock on sans thong!)
That being said, there a ton of things I miss that I can’t get back. At least not right now. I miss gourmet flatbreads. I can’t find a restaurant that offers gluten-free flatbreads. (If you can offer gluten-free pasta why can’t you bake a gluten-free flatbread?!) I miss my elderflower martini like crazy. I miss having unlimited options on a restaurant menu. I miss the bread basket. I miss being able to meet up with people at places like Starbucks because there’s next to nothing I can eat or drink there, unless it’s water. I miss normal birthday cakes. I miss barely knowing what the inside of my doctors’ offices looked like, save for once a year. I miss having a near-empty medicine cabinet. I miss my hair, which is thinning thanks to the meds. I miss a clear complexion for that matter. I miss my energy level, which while not as low as it used to be, drains down a lot faster these days. I miss my money–copays, prescriptions and gluten-free eating are expensive. I miss doing crunches (and I never thought I’d say that)! I miss the days when I didn’t have to crap at work, and I miss when it didn’t smell (or be loud) and embarrass me! I miss not ever having to think about my guts or my poops unless I got a GI bug. I miss having “problems” that were actually just inconveniences and not actually serious. I miss the life that I didn’t appreciate when I had it. I miss being normal.
I was missing normalcy a lot worse when Victoria’s Secret’s semi-annual sale rolled around after the holidays. See, I’m the type that can only take being backed into a corner for so long. And, life with UC is a roller coaster, and personally, I hate roller coasters. So I did what any glum gal does, I went shopping. With that “Flush My Secret” post in the back of my mind, I deliberately bought frilly, exciting, frivolous underwear. It goes against all common bowel disorder logic. I spent money on something nice that could be ruined? You bet. (And duh, I waited for a sale.) Call it one of those “superficial interventions,” call it reclaiming one of the dozens upon dozens of mundane aspects of my life that I thought I’d relinquished forever. Or, call it taking back a little control. Whatever you call it, this small act empowered me, and had a cascade effect. I began doing that P90X workout despite some increased discomfort. After a few sessions my abs strengthened and whaddaya know? The cramps stopped. I began enjoying wine without the guilt, since wine doesn’t exacerbate my symptoms. Guilt (and anxiety and worry) do. I even started experimenting more with food. The other day a coworker handed me an Italian candy from his trip. I unwrapped and took a small bite. My other coworker, sitting next to me, gasped and said, “But how do you know that’s gluten-free?” I looked right at her with slyly narrowed eyes. “I don’t,” I replied, “But I’ll know shortly.” I felt like a daredevil. (In ten minutes I was a bloated daredevil–the candy didn’t agree. Surprise, surprise.)
I began exploring alternative treatments and started acupuncture, something that surprised my husband. He lauded my courage initially, saying he’d probably never do it, but now he goes, too. I signed up for a writer’s workshop. Normally I’m too drained after a long day of work to give much in the way of oral feedback, but I’m there at least, out in society again, focusing on something I love. And, I’m even planning a vacation. A real one that involves airplanes and tropical beaches. I’m not in remission, but I’m not waiting around anymore. Life is passing me by, and me sitting on the sidelines, anxious and stressed, fretting about my next meal, my next bowel movement, my next however many years, is doing more harm than good. Without happy distractions, it’s too easy to get caught up in the what-ifs and the poor-mes. Like a lot of people, I’m a worrier by nature. And like a lot of UC sufferers, I need to get out of my own head if this stupid flare is ever going to calm down. So my point? Find a positive distraction, let it empower you, let that snowball. And, do it in some sexy underwear. You’re worth it.
The other day my husband asked me why I was tweeting about bumper stickers from my @MyGuts4Garters Twitter account, when wasn’t it supposed to be about Ulcerative Colitis? I said no, it’s about living with Ulcerative Colitis, which means it’s about everything to do with having an invisible disability while trying to be normal. I’m pretty sure someone with Ulcerative Colitis a) encounters pithy bumper stickers on a daily basis and b) wouldn’t mind a little humor or distraction. If I only blogged about symptoms, medications and daily UC-related frustrations, I’d shoot myself. Talk about focusing solely on the negative and being obsessed with it to the point where it consumes your every waking thought! It’s bad enough that you feel it day in and day out, hour by hour. These days, I find myself trying not to think about it. I just want to be N-O-R-M-A-L. There are thousands of women like me out there–and I’m including preteens and teens all the way up through 99+ here–who are dealing with the nasty symptoms of IBD and wanting to feel cute, pretty, feminine, and/or sexy. And what do women who need a pick-me-up do? Well, many of us turn to cosmetics. There’s science behind it: “superficial interventions” such as makeup, manicures, hair, etc., “ease distress. . . looking good helps [patients] feel better and gives them more confidence to cope with their disease” according to Dr. Thompson in the article “Why more hospitals are using cosmetic services to help treat cancer.” In the same article, a cancer patient is quoted as saying that simply putting on her wig “takes the stress away” and that “stress is the enemy to getting better.” Amen, sister.
So with that in mind, what am I here to do today? Share my trial-and-errors with mascara. There were a lot of duds, but the hands-down favorites are Too Faced Better Than Sex mascara and Urban Decay Cannonball waterproof mascara. Too Faced wins for adding extreme length and volume, and Urban Decay does the same–slightly less in the volume department though not by much–while being supremely waterproof. Want to boost Cannonball’s volume-adding abilities? Use Dior’s Diorshow Maximizer Lash Plumping Serum as a base first, then apply your mascara of choice. Prefer your non-waterproof mascara but want to waterproof after the fact? Apply Anastasia Beverly Hills Lash Genius Waterproof Topcoat, which does a terrific job of smudge-proofing an otherwise very smudgy mascara. Think face-smooshed-into-a-doughnut-pillow-on-a-massage-table-for-fifty-minutes smudge-proof. Your cheeks might have pillow lines, but your eyes won’t have raccoon circles! One less thing to have to worry about given everything else on our plates. So ladies (and gents), though mascara may not be your personal go-to, you deserve a boost. Seek out your superficial intervention today!