Tuesday, October 6, 2009

To Everything, Turn.

A few months ago, I was having a routine check up with my gastroenterologist. I always like to tease him that I must be his most boring appointment of the day, since the last 3 years I have met with him every quarter to look at lab values, review the medications I'm on, tell him I have no symptoms, shake his hand and promise to see him in 3 months.

The last time I was there, we made some adjustments to my medications (ok, truth be told, I made some adjustments to which he hesitantly agreed to) and we discussed the ramifications of what would happen if these adjustments didn't go smoothly.

Sitting across from me in his chair, he talked about various options I would have, explaining in very simple terms that "colitis is a disease of recurrence."

I am chagrined to admit that in my head, I smugly laughed at this statement. "Not me," I thought. "I've got this baby licked."

Who knows where this burst of confidence had come from? In the six years I have had ulcerative colitis, the first three years were a rollercoaster of uncontrolled symptoms, tinkering with medications, enrolling in clinical trials, and even contemplating surgery. While I have been amazingly blessed to be in remission for the last three years, it's not like the past history of my disease gives me reason for such arrogance.

But a lot has changed in my life in three years and at that moment, I did indeed feel utterly confident that while colitis may be a disease of recurrence, mine would not be making a comeback.

You know where this is going, right?

Note to you, dear reader, if you're squeamish about body functions, it's time to sign off. If you're not too familiar with ulcerative colitis, let me just inform you it falls under the classification of "Inflammatory Bowel Disease." I like to call it the angry colon. You do the math.

It started innocently enough. Three weeks ago, I was meeting Jamie and Donna for our 10 mile run on a crisp, beautiful Saturday morning. I pulled in to the Harris Teeter parking lot where we were meeting and had to dash inside to find the restroom. I didn't think too much of this, as running and urgent bathroom trips aren't too unusual - although I didn't really take stock of the fact that this usually happens post ten miles, not pre ten miles. The next week trickled on like this, and I systemically began eliminating the usual culprits - coffee, pop, sugar, running...

No avail. Last Friday, I was working from home and I knew it was time to concede that this was looking like a flare. I could barely finish drinking a glass of water, much less eat an actual meal, before I was running to find the bathroom. Other telltale signs of a flare began showing up - joint pain, fatigue, cramping, and then most undeniably, tremendous amounts of blood. (Yup, I'm going to go there. This is my life, mk?)

I didn't panic yet, as I've generally responded pretty well to steroids in the past as a quick fix for flares. I called the on-call physician who prescribed me a low dose of steroids. I counted down the days til Monday, counting on the fact that my doctor would come through my usual dose and by Tuesday, I'd be back to normal.

Fast forward to Wednesday. I'm on my usual amount of steroids. I'm leaving for Montauk, for one of my best friend's wedding in 24 hours. Nothing has changed. No food will stay with me. I'm waking up five, six times during the night. I am a zombie. I am tired, I am hungry, I am sick of the hum of the lights in my own bathroom, I am scared that this is not stopping. I am, officially, anxious.

The weekend travel to Montauk was one of the most anxious and stressful weekends I've experienced. The fear that the urgency to use the restroom would overcome me at the most inopportune moment - while sitting in the middle of preacher's homily, the moment the plane was barreling down the runway, while I was standing up there giving my toast to my lovely friend - was overwhelming. I sat in bed on Saturday morning bawling into my two wonderful girlfriend's arms, overcome with sleep deprivation and anxiety, sniveling about how I was going to ruin the ceremony by dashing from the front pew, heels clattering loudly as I sprinted to find the SINGLE bathroom in the back of the church. (Note to church builders: more than one? Please?)

Thank the high heavens these same girls spent nearly every waking moment with me during the first year of my disease, our senior year in college, when I was undiagnosed and equally as out of control. They know that "find a gas station" is not a request, but a statement; they know when I say "I can't eat that" to move on, and they make no fuss about tucking me in early after the rehearsal dinner to go back out, never once making me feel bad that I'm not keeping up. My gratitude for the support and understanding of these girls is profound.

I survived the weekend, even sat through the entire ceremony. Without a single drop of champagne or bite of wedding cake (Boston Creme Pie, cry me a river...), I even managed to lose myself for a few hours in the boisterous joy of the reception, dancing around with my favorite people in the world to "Jessie's Girl" and "Don't Stop Believing." And, let's be honest, I've been a bride... I know that everything I was experiencing didn't extract a single moment of happiness from my gorgeous, wonderful friend's perfect weekend.

Although I did try to hide it from her, and once she determined I wasn't pregnant after loudly pointing out that I was not drinking champagne (AT ELEVEN AM, WHAT AM I, A WINO???! WHAT DO YOU PEOPLE EXPECT... ok yes, clear giveaway), she then quickly deduced that I was sick. "You didn't eat salad at lunch. You always eat salad." Most observant friend ever? You bet.

Also on the amazing list? My husband. Always has been, since the moment I was diagnosed. Can you imagine coming home from a 12 hour shift of sick people ... to another sick person? He serves me in his actions, walking the dog when he realizes I'm going to be late to work because I'm behind closed doors, heating up another frozen pizza with nary a complaint and texting me to drink Gatorade throughout the weekend. He is unfailingly and unflinchingly there.

The weekend is behind me, and I'm back home wondering what the options are. I will see my doctor on Friday, and it sounds like there's a flex sig procedure in my future which I am less than enthralled about. In the meantime, I am trying to take this one moment at a time.

I don't look sick, I don't sound sick, and short of explaining my bathroom habits, it's infinitely hard to explain to someone what living with colitis day to day is like. Each moment is centered on where will I be, will there be a bathroom, can I eat, can I drink, will I be with others, will I have to move around a lot... Sleep is interrupted every couple hours, and the resulting deprivation can quickly turn a minor stress into tears and catastrophe. Little things are affected. I can't walk Buddy for half an hour, because half an hour takes me too far from home and the bathroom. Social life? Non existant. I don't eat before teaching, because what if? Mid power point? Can you imagine?

I can.

I know a great deal of my remission has been the change in my mental status over the last three years. I have made long-legged strides to deal with stress definitely, to loosen tight reins on the need to control, to choose thoughts that bring me perspectives of joy and gratitude. This is hard to do when the most basic of body functions is not even something you have control over. I will honestly say I have been fighting an uphill battle to "think positive" for 10 days, since this started.

Yesterday, I decided to stop trying to force my thoughts to positives and try to go a little more simple. Each moment that I find my shoulders up around my ears, my hands gripping on the steering wheel, or tears pricking at my eyes as thoughts of "what if this keeps going... what if i have to have surgery... what if I don't respond to.... what if the flex sig shows.... WHAT IF...." I am trying to stop and breathe. That's it. Just breathe.

So that is where I am, right now.

Colitis is a disease of recurrence. That is my right now. It hasn't been my every single day, and I pray it will not be in the future. But for now, it is. It is.

(But at least I have a doctor in house.)

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