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Those Familiar Feelings
Let me take you back in time to a week and a half ago.
The weekend had not been awesome. I’d attempted a yoga class Saturday morning, and I had to leave the room twice to use the bathroom. It was especially embarrassing when I came back into the room and everyone was in side angle pose…facing the door.
On Sunday, I embarked upon my usual tradition of a morning spin class. Again, I had to haul ass out of the room during class — blinding everyone in the dark room with the blast of brightness from the hallway when I opened the door — to do things like Crohn’s.
I spent the entire rest of the weekend on the couch. I was tired and lazy and I lacked any semblance of motivation or energy. I was enjoying high points here and there, but mostly this disease was continuing to wear me out.
Monday came, and Monday was great. After work Monday, I went to yoga with a new-to-me instructor (Terri, and she is wonderful and kind) and accomplished my big yoga goal of the moment: I started in crow pose and then jumped back straight into high plank pose. I think the yoga term for this is whooleykohavsana, but I’ll have to double check.
So I was riding high on Monday. Riding high plank.
On Tuesday, I went to yoga again. I crow-jump-backed again. Three times, in fact. My yoga teacher even posted a gold star on my Facebook page after class.
Then Wednesday came. On Wednesday, my stomach felt slightly worse than usual during the work day, but I didn’t think a whole lot of it. I decided that instead of going to yoga again, I would go home and then visit my friend Michael and her sweet sweet baby. They live next door, so it’s eeeeasy.
I decided to eat dinner before I went to Michael’s.
Then, almost immediately, something terrible happened.
The Crohnsing went from about a 7 to a 10. On a scale from 1–5.
I did not go see my friend Michael. I spent the entire night in the bathroom absolutely writhing in pain. Not discomfort, not like before — pain.
And that’s how the past week has gone.
It’s been real bad over here, folks.
Not that things were ever particularly good or better. The methotrexate most definitely isn’t working at all, so I’ve been feeling frustrated and like nothing is ever going to make me better. My standard for a decent quality of life is scary-low.
I worked for a few hours last Thursday morning, and then had to bolt home for the day, and I called in sick Friday. I made it a whopping, what, week?, into the new year before having to dive into the sick day pile (I’m lucky to have them, most definitely, but they sure do go fast for this girl!).
For the past week, I have felt a lot like Spring & Summer Ali. The Ali who was too sick to get off the couch, who couldn’t eat or drink anything, who has a “gray face,” according to her coworkers and who has to wear sweatpants 100% of the time because anything else is too tight and constricting.
I am always tired, in large part because of the disease itself, in also a large part because I’m not sleeping and in yet another large-sized part because of the methotrexate. When I started on the drug, I asked my doctor about any side effects, and aside from the usual ones I’m also experiencing (crazy hair loss, cute acne, fun nausea), he said I’d “be really tired.” My sassy response was, “That’s fine, I’m always tired.” And he sort of smirked. “Well, you’ll be tired-er.” Naturally I refused to believe him, and naturally I’m an idiot.
The night sweats are kicking my ass. I go through about four costume changes a night. I start in the bed, on a towel. Then I go through two pairs of pajamas. After the first pajama change, because I’ve thoroughly soaked through all the blankets, sheets and mattress, I move out to the couch. Brian has been making a little bed-couch situation for me before he comes to bed every night, and I think that’s nice. It makes me smile when I make the 3 AM transition. By 5 AM, I’m usually into a bathrobe or another towel. On the couch.
So thaaat’s annoying. Because I don’t like changing in the night in the dark and I definitely don’t like having to do laundry.
As always, I’m also in the bathroom pretty constantly. Because I’m hardly eating or drinking (my fault, my fault, my fault, yes), the bathroom situation is worse. And I’m dehydrated as hell.
But the worst part is the pain.
I remembered what so much of this all felt like, since it all hasn’t truly, fully gone away in, oh, two years. But I didn’t remember this pain. And now, wow, I recall quite clearly.
There’s pain in my lower abdomen, which is standard for me. But there’s also pain in my middle abdomen and my upper abdomen, by my ribs. Every single part of my front midsectiony area hurts. I can’t sleep, I can’t sit up straight, and I definitely can’t bend over to tie my shoes.
But here’s the big difference between Spring & Summer Ali and Winter 2014 Ali: my attitude.
I spent some time in the past week crying, that’s for sure. I did my share of “Why me?” and “This isn’t fair.” I wept because it hurts, and I shed a few tears over the fact that this is not how I wanted my new year to start.
Not having control over your life or your health is so frustrating.
I refuse to go down the self-destructive path I went down this summer, though. I think about my mental state then, and it was scary. I will never, ever forget one of the last nights I was home back when my parents were taking care of me in May (when I was supposed to be on vacation in Hawaii with Brian). I was laying on my parents’ bed watching TV and my mom asked, “What can I do for you?” (As if she hadn’t done enough already.) I looked at her and I started to cry, and I said, “I just want to die.”
I think it took some self-restraint for my mom not to slap me right across the face. The look on her face was so horrible and so sad and so devastated that just thinking about it makes me cry now. But I was so deeply depressed and upset and I wanted to be out of my misery.
That night was a slap in the face, though. You can’t tell your mom you want to die. Even if you’re half-joking or being dramatic, don’t say that. It will break her heart.
Yes, now that this gut-wrenching (for real) pain is back, there are times I find myself yelling out, “I can’t do thissssss” or “make it stopppp.” I am forcing optimism on myself, though.
So what next?
I went to the doctor today.
They took eight vials of my blood, among other special types of samples, and gave me IV fluids for the dehydration. One of the new residents working with my doctor talked to me before the doctor came in and said, “So basically they’ve tried everything on you and nothing works?” You are correct, sir!
My doctor came in and handed me a box of tissues, because I’m a doctor crier, every single time. I get so emotional, baby. He said he didn’t like that I’ve lost some visible weight (around 10 pounds since Christmas) and had me talk with the nutritionist. Then the good, productive stuff happened.
Remember how my doctor wanted me on that drug Stelara, but my insurance company refused to approve it because it’s only FDA-approved for Psoriasis, which I don’t have but CariDee English from “America’s Next Top Model” 2006 has? Well, my doctor is co-running a clinical trial right now for a new version of Stelara that’s specifically for Crohn’s diseasers who have failed other treatments. It’s for us failures!
Sign me up.
So he did.
I am officially enrolled as part of a clinical trial. I have a bunch of appointments leading up to the actual start; I have to meet with an ophthalmologist, a neurologist, an EKG person, a chest X-ray person and all kinds of others who will test every sample in my body. Then, on February 5, I can begin the trial. I’m going to be a lab rat! Or a guinea pig. Which one is cuter? Guinea pig, I guess. Or puppy.
Now of course, there’s the chance with a clinical trial that I will get a placebo (no drug). And that would suck. But there’s also a chance I’ll get the drug, and that the drug will help heal me. That’s the outcome my fingers are crossed for.
Today, my cab driver took me through Central Park on the way home from work. And instead of feeling hysterical or heartbroken as we drove by all the runners, I kind of wanted to cowbell for them. But I didn’t have my cowbell.
As we drove by my favorite spots — the south mall where we used to meet for Saturday morning Team Challenge runs, my special JackRabbit commercial filming spot, the Reservoir, the Bridle Path, Engineers’ Gate and Bernie’s Bench — I didn’t feel as upset as I would have expected. Instead, I felt excited.
Because for each setback, there’s a comeback.
And I know that at some point, I’ll get to make my comeback.
I can’t wait to be able to go to yoga again. I can’t wait to get back to spinning. But best of all, that first run back, whenever it may be, will be amazing. I know it.
I can’t wait to make my comeback.