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- January 16, 2015 by AliA Crohn's Update + Things To Know About Enrolling In A Clinical Trial
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The Biggest Little Victories
After last week, when I got to write that really fun “I see signs of improvement!” post, I’ve so badly wanted to write another one filled with enthusiasm and joy (if only because you all left me the best comments of all-time with words of encouragement and happiness, and reading them got me all teary eyed and smiley faced).
Unfortunately, each time I’ve felt victorious about something — whether it’s a walk in Central Park or merely responding to an email — I seem to get kicked down a bit soon thereafter.
My moods and emotions are unpredictable at best. I can feel so much excitement the minute I finish a spin class without having to bolt for the door (and the bathroom behind it), but when I find myself in pain an hour later, or getting up 12 times throughout the night (not necessarily an exaggeration) to use the bathroom, I’m so beyond frustrated that I want to punch the throats of kittens.
Sorry. Not a cat person.
Still, after being so down on my luck for the entirety of 2013, I know I need to start changing my perspective. It’s a work in progress and I’m in no way back to being Happy Ali ’round the clock. Sometimes I just want to stew in my misery, so that’s exactly what I let myself do.
Today, though, or at least this hour of the day, I’m ready to shed a little positivity on the world (and by world I mean “my tiny corner of the internet that my mom likes to read”).
Am I better yet? Am I out of this flare-up zone?
Not at all. My stomach is relentless and unforgiving and refuses to get itself together.
But the iron and albumin IV infusions I’m receiving each week are definitely helping me get out of the apartment on a near-daily basis. Hooray for that!
And hooray for these other little victories that show signs I just may be slowly coming back to life…
I got a pedicure and turned on the massage chair! When I was in New Hampshire letting my mom take the very best care of me, all she wanted was for me to get out of the house. She forced me to take a walk to see the neighbor llamas, and the next day she practically begged me to put on human clothes (I had stayed in pajamas for five days straight) so we could go get pedicures.
Now, I am not one to pay for nail care. Manicures chip before they’ve even dried, and as a former runner (that hurts…), pedicures are simply a waste of money and callus removal. But if I have a special event coming up that will require open-toed shoes, I indulge in a pedicure, more so because I adore the massage chair and less because I care what my toenails look like.
When my mom and I went in for pedicures, I was in too much pain to turn on the massage chair. I hated that it made me wiggle and shake around, and so I just sat there, pissed about the waste of a good electronic back rub.
This past Friday, I decided to get a pedicure. And I turned on the massage chair. And it was fine. Pleasant, even.
I sang in the car! When Brian and I drove up to Vermont two weeks ago for a wedding, I was a wreck in the car. I was uncomfortable, I was anxious and I had made a killer playlist for the drive. Regular Ali is a karaoke superstar. I mean that. My vocal cords are basically made of gold, and if you’ve ever been with me past two drinks, 2 AM or two minutes into a road trip, you would agree. So when I refused to belt out my finest Kelly Clarkson on the way to Stowe, it was clear I was really, truly ill.
This weekend, Brian and I road tripped again, this time to Waltham, MA, near Boston (and Tyler!), for wedding #62 of the year.
And this time, I friggin’ sang. I got my Pitbull on, I channeled my inner Pink and you bet I Beyoncé’d my heart out. Not only is this a sign of improvement, it was also a fun time for Brian, who claims I “don’t know the lyrics to any of the songs,” which I know is not constructive criticism but rather a compliment toward my creativity.
I’m dying to ride my bike! I haven’t been on that bitch since I crashed it back in December. But lately, I’m desperate to clip in (and probably fall). I even brought my bike up to Boston this weekend hoping Brian and I could go for a ride before the wedding. We didn’t — the air conditioning and hotel bed won that battle — but I had the desire to hop on. And one of these days, I will ride my bike again. And on another day, I will take it into the bike shop because several parts are dirty, broken and mangled after the crash.
I did crunches! Obviously when my stomach is in a searing amount of pain (is “searing” a way you can measure pain? or just heat? does this work?) I can’t even fathom the idea of doing core work. And that’s sad for me, because I’m a lover of crunches and planks. I started every single day for at least two years by doing a “morning ab routine” that consisted of a billion crunches, and I loved it.
Then I got sick, and the crunching and planking ceased immediately. Goodbye, “abs” (that never actually visibly formed, dang it), goodbye fun mornings.
On Saturday morning while Brian was sleeping off his allergies, I went to the hotel gym and lifted a few weights and then…I crunched! I did 300 crunches and couldn’t stand up straight or cough for the next two days because I was so sore.
I danced at the wedding! At the Vermont wedding, I stood as far away from the dance floor as possible.
This time, it took some courage and some time, but by the end of the night, I boogied along to a few songs. My moves leave much to be desired when I’m not wearing tap shoes, but I was pretty psyched to be out there with my friends.
I played with Tyler!
The last time I saw him, I was too miserable and exhausted to interact with him at all. But when I saw my main man on Sunday for a quick visit, I was able to hold him, read to him and snuggle with him for two seconds before he lost interest and ran away.
I survived the ride back to NYC! Driving up to Massachusetts — despite being seriously hopped up on a hefty dose of Imodium — required several urgent rest stop visits. Many of them were sketchy and unlit and it was late at night and I could have died. Thanks a lot, Crohn’s.
On the return trip, though, I didn’t take Imodium, didn’t have any in-car panic attacks and didn’t need to make a single pit stop. Victory is mine, you guys. It’s mine. Or it was, until I got home and suddenly my body revolted. I’m starting to think I’m Crohn’s-allergic to New York City…
I got the buzzer! For months, I was too sick and tired to get off the couch, which meant that when my delivery food arrived and the buzzer went off, Brian always had to get up to answer it. On Sunday night, without even thinking about it, I went over to answer the buzzer and get the door when our delivery meal arrived.
I made a list! I think that my love for lists was stressing me out for a long time and that contributed to my anxiety and sickness. So throughout this flare-up, I’ve resisted making lists, particularly of the To-Do variety.
I’ve also resisted thinking about the future or planning for it.
But then I made a list. And one day I’ll be healthy enough to do the things on that list. No rush. No pressure. But the list exists. And somehow that’s a sign of an improved mental capacity.
I never thought I’d be excited about doing such minor things as “answering the buzzer.” I just keep thinking to myself, “I used to run marathons. How is getting off the couch now considered a victory?” At times, basking in these tiny improvements is so discouraging and so hard for me. I want to be doing more, I want to be recovering faster and I want to be back to my normal self after all this time.
Other times, though, these tiny victories feel huge.
Oh, did I forget to mention that other thing I did?
I ran a full loop of the Reservoir last Thursday. That’s 1.57 miles. It took me 17 minutes and 38 seconds, but I didn’t have to stop and I didn’t stop smiling.
Then, just to make sure it wasn’t a fluke, I ran the Reservoir loop again on Friday. This time it “only” took 17 minutes and 5 seconds. There was one bathroom stop, but that didn’t affect the amount of smiling.
I tried again Monday and it was a total failure in every way possible.
But Thursday and Friday…
Thursday and Friday were huge victories.