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- This week! What a difference! This week was awesome. I went from feeling like we were all existing in survival mode… https://t.co/WAmKLkAy4T 06:16:56 PM December 07, 2018 ReplyRetweetFavorite
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Survival Of The Sickest
This post was going to be so happy and so positive, you don’t even know.
And you never will.
But sit tight, because you’re going to get that whole story.
Lest you think things are all dark and scary in The Land of Sickness right now, I will start this off by sharing with you a common misconception about people with Crohn’s disease and other digestive illnesses.
It’s probably implied that when people such as myself are this ill, we are gross and unsexy. I’m here with a story to prove that wrong.
I was at the doctor about a week and a half ago for my second clinical trial appointment. This was the appointment where they’d do my physical exam and a bunch of other tests in order to make sure I was eligible for the study. I thought I’d already been accepted at this point, but apparently there’s a difference between being “enrolled” and “accepted.”
For the week prior, I’d been tasked with keeping a health diary (which I’m still doing). I have to keep track of my daily temperature, the number of daily bowel movements I make (sickeningly high and well into the double-digits) and other useless numbers, like rating my pain and “state of well-being” on various scales. Then the Clinical Study Ladies add those numbers up and it all computes itself into a Final Number. The Final Number determines whether you’re eligible for the clinical trial.
And at that fateful appointment a week and a half ago, I was told that, according to my bowel movement and temperature and random scale chart data, I’m “too sick” for the study.
So I got myself worked up about this and was very upset. Meanwhile, I was getting fluids via IV, because I’m all dehydrated, so my right arm had a catheter in it and the IV fluid bag was being held up on the pole attached to the chair I was sitting in.
When I get worked up, I have to go to the bathroom.
I was in the exam room alone while the doctor and Study Ladies discussed my situation, and there was no pole-on-wheels that I could use to take my IV bag on the go.
“Whatever,” I told my hysterical self. “I’ll just hold it up with my left hand while I go to the bathroom.”
So I did. I bolted for the bathroom, IV bag in my left hand overhead, catheter still firmly implanted in a vein in my right arm.
I made it to the bathroom, while still holding the IV bag over my head, and then came that vicious, vicious nausea.
And then — this is the part where I disprove the “people with Crohn’s are unsexy” myth — I started throwing up.
I’m operating on a mostly empty stomach these days, so it was less of a real throw-up and more of a spastic dry heave/coughing situation. But still: Crohnsing + IVing + IV bag holding + puking = one very beautiful girl. And also I was crying while this was going on.
I can laugh about it now, because by the time I got back to my exam room the Study Ladies said I actually could be part of the study and blah blah blah something else about math and science. So that appointment ended on a very happy note.
Then, this past Monday, I got the most wonderful phone call from Study Lady #1.
It was time.
She scheduled my “randomization” appointment for Friday, January 31.
I was finally going to get the drugs! Or the placebo.
But even if I were to get the placebo, I told myself, it would work, damnit. I would will it to work. I’ve spent this week feeling so excited and so hyper-optimistic and, between the fevers and the night sweats and the grossness, feeling an overwhelming sense of calm. I’ve had so much confidence that this clinical trial is going to be what works for me. After all this, after everything else I’ve tried, this has to work…right?
So that’s what today’s post was going to be. The really excited, really anticipatory “last sick girl post.” Because by Monday I’d already be feeling better. I started thinking about my return to the subway, my return to yoga, my return to Central Park and, most exciting, my return to a spring half-marathon I really want to be able to run.
Except that not.
Today Study Lady called me again.
Apparently if you’re on a medication, you have to have been on it consistently for eight weeks or longer before you can begin the clinical trial.
I started the methotrexate seven and a half weeks ago.
And Study Lady is out of the country next week.
So now I have to keep waiting. Now I don’t get my miracle medicine until February 10, and I cannot even begin to explain how far away February 10 feels when January 31 was so close I could feel it.
In this moment, fresh off that phone call, I am heartbroken and frustrated. I know these feelings will pass and I’ll go on with my life as I have been, but right now I’m sad and I miss the optimism that was carrying me through the week.
And the thing is, I never even wanted the methotrexate!
The medicine that I knew wouldn’t work, and that even my doctor sadly predicted wouldn’t work, is now the reason the medicine I truly believe in is being withheld from me for almost two more weeks. I believe the methotrexate is poison and I believe it is making me sicker (my doctor wants me to stay on it during the trial, which I really don’t understand and can’t really explain…we’re going to talk about that more when I see him next).
My hair is falling out at scary-rapid speed, and my face has more bumps and dryness and weirdness on it than when I was a teenager. The nausea is horrific and I’m tired 100% of the time.
There’s also the weight loss, which isn’t from the drug but from the disease itself and my body’s inability to retain anything. Since Christmas, I have lost more than 15 pounds. It is the lamest diet ever.
A few nights ago while FaceTiming with my parents, my dad said my collarbone “looked disgusting.” Though at work the next day, a coworker said my “cheekbones look amazing.” But that’s just the difference between parental concern and working in an office filled with former dancers with body issues.
That just about brings us up to speed.
I’m very sick. I’m very uncomfortable. I’m in constant pain and I’m not sleeping. I hate when people ask how I’m feeling because even though I love them and appreciate their care and concern (really I do), I just feel like I’m complaining when I answer truthfully, and nobody likes a complainer!
The other day, my wonderful college roommate and BFF said something to me that I keeping going back to.
I was updating her on these health things and the severity of everything, and she said, “I can’t believe you’ve been doing this for so long. I would have given up a long time ago.”
And my only thought was, “Well what other option is there? How do I even give up?”
I don’t feel like I’m “fighting” Crohn’s disease. I don’t feel like I’m “kicking this disease’s ass” or doing anything to prove I’m “stronger” than the disease. In fact, I believe the disease is definitely winning this round and I’m barely still in the fight at all.
All I’m doing is staying alive. One day at a time, I just get through the day. I try to be happy as often as possible, but most of the time I’m just kind of uncomfortable and out of it. So I’ll cry a little if it helps. And I wear sweatpants. Only sweatpants. Even when I go to work.
It would be sad to end this on an upset note, so here is a happy thought: The first day I’m healthy, like really healthy, I’m throwing a party and you are all invited. Please bring an appetizer with melted cheese or a whole cheese pizza.
Thanks. Love you forever! See you at my party.