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- New post: Last week was a good week. (Today, not so much. Ah, Crohn's, keepin' me on my toes!) https://t.co/djlbOLyuvO about 19 hours ago ReplyRetweetFavorite
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- July 9, 2013 by AliEmbrace The Sweat (An "I Heart Sweat" Shirt Giveaway!)
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- October 13, 2016 by AliThings That Make Having Crohn's Easier (And A Few Things That Make It Worse)
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Thankful Things Thursday: I'm Doing My Best
Ohh I am not feeling thankful today.
Instead I am feeling pretty awful. Minus the “pretty” part. Physically I’m deteriorating. Mentally I’m not far behind.
The other day, when I first started feeling really sick, I remember thinking to myself, “I’m handling this remarkably well. Work is beyond insane — the craziest, busiest and most stressful it’s ever been in the duration of my little career — and I have so much on my plate, but I’ve got this. I’m doing OK.”
I know myself well enough that as soon as I thought those positive thoughts, I had to pause.
“This is the calm before the emotional storm. Enjoy this feeling, because a breakdown feels just around the imaginary corner.”
Today, on Thankful Things Thursday, I’m here to do my best to take a detour that will hopefully keep me away from that corner for a little while longer.
If I’m on board, will you join me?
I’m thankful for puppies. We’re starting strong today, folks. Puppies right from the get-go. Bringing in the big guns. The big…pups?
I’m thankful for Skype. I used to go to the gym after work. I’d hit up a spin class or lift some weights. If I felt particularly ambitious — or exceptionally tight — I’d even attempt a yoga class. But these days, that’s simply not happening. I’m far away from the spin bikes, the dumbbells and the mats and it sucks.
You know what’s just as good as a hefty dose of cardio and some time in Downward Dog?
Talking it up with this guy:
Nightly chats with Tyler — he has a lot to say these days, like “dadadadadada” and “schwermel blah” — improve my shoddy mood significantly. He makes me laugh and sometimes cry, when he does amazing things like walk to me from across the room. Technology really is a beautiful thing.
I’m thankful Dr. Pretty Face was able to see me yesterday. Mostly thankful.
So the health situation. Let’s talk about that.
I know. You’re tired of hearing about this and I’m sure even seeing the word “Crohn’s” on your screen makes you click away.
If you are, trust me — trust me — I’m tired of it, too. So, so tired of it.
And not just tired of it. I’m over it. I’m exhausted from it.
I will never forget how I felt when I was in the hospital last fall and Dr. Shah came in with the results from my latest MRI and colonoscopy. He told me my case of Crohn’s disease was “mild to moderate.” Mild to moderate? That’s it? It felt like such a slap in the face.
Am I that weak that I don’t even classify as having a legitimate case of this disease? Or are people who have it really badly just so much more miserable than I could ever imagine?
He said the disease appeared severe in my sigmoid colon and actually, technically, diagnosed me with Crohn’s-colitis. Look at that: overachieving as often as possible. Why have one Inflammatory Bowel Disease when I can have both of them?!
You may remember that I began having symptoms of a flare-up a little over a month ago, right before I went to Colorado for a ski trip.
Things never got too terrible to bear. I had the bathroom stuff happening which is of course unpleasant, but I never had the fevers, the aches or the life and energy sucked out of me. I was in pain, but I was mostly fine.
As soon as I returned from the trip, I got my every-8-week infusion of Remicade. It didn’t help right away as it typically does, but after a few days things started to improve slightly.
They never fully got better, but I was OK enough to do a little bit of running again and feel mostly decent. Life was good. Or at least it was good enough.
Then things got crazy.
Work got crazy.
Work has just been…a lot. Everything is fun, but it’s intense and one day in a few weeks I’ll be able to tell you all about what we’ve been working on. Because I know you’ll lose sleep until then.
We all know that I love working hard. But my body doesn’t seem to love it, and right now my body isn’t keeping up.
After an early call time and a stressful work day Sunday (yes, Sunday — WTF?), I came home, relaxed for a bit and then decided I wanted to enjoy the sun and go for a little run.
That run was my sign.
It was terrible. I didn’t make it far before I returned home, hobbling from one public restroom to the next, knowing things were getting bad.
That night, I had my first fever: 101.2 degrees.
By Monday night, it climbed to 101.9, Tuesday it hit 102 and each evening since Sunday the night sweats have been out in full-force. I’m not sleeping well despite being exhausted and I’ve got another big trip right around the corner (L.A. next week for a pretty intense 4-day conference — think long days and longer bathroom lines).
Because my doctor is “excitingly busy” but wonderful, he was able to squeeze me in for an appointment yesterday, and I’m so appreciative.
Except that the appointment was frustrating as hell.
When there’s no real cure for a disease and you’ve tried so many of the drugs out there and they’ve stopped working, you eventually just sort of hang your head.
He’s putting me on steroids, which I started yesterday. A short but hefty dose, which he hopes will at least calm the symptoms enough for my trip next week. I also have someone coming to my apartment on Monday morning (yeah, that was weird to me, too) to run a blood test that will determine the Remicade levels in my body right now (“Your disease could be sopping up the drug too fast,” Dr. Good Times said), and then we’ll decide if I should be getting a higher dose of the drug or upping the frequency of my infusions. The doctor tested me for celiac disease, just because “the test is easy, so why not?”
He’s checking to make sure I don’t have the C-DIF virus (the test for that one is fun, let me tell ya) and he took my blood to measure my inflammatory markers and white blood cell counts.
As always we talked about my diet, and his theory is, “If it makes you feel good, eat it. If it doesn’t make you feel good, don’t eat it.” Vegetables, salads and most healthy things are out. I’m on the all-carb diet. I’m literally carb-loading for nothing.
Finally I just asked my doctor, “What the hell am I doing wrong? Why does this keep happening?” And then I shut up really fast so I wouldn’t cry or seem too pathetic. (Too late.)
Dr. Trying To Be Nice But Making Me Feel Badly said that in the cases he sees, among other things, stress can definitely play a factor with triggering flare-ups. “You need to balance the stress in your life,” he advised. “The voluntary stress is actually OK — if training for a marathon is stressful but you enjoy it, that’s different from the involuntary stress caused by things happening at work that you can’t just eliminate or control.”
In other words, I’m fairly certain my doctor just told me to quit my job, take up recreational marathon running and say goodbye to Crohn’s.
That’s how you understood it, too, yeah?
By the time I left the doctor’s office, I felt no sense of relief. No “Cool, we’ve got this figured out this time.” Hopefully the steroids will work and in the meantime I’ll just keep playing the patient game and getting annoyed by all the constantly-healthy people in this world.
Yes, I’m bitter.
Go brag about your awesome morning runs on Twitter. Go tell the world about that delicious salad you ate and how great you felt afterward.
I’ll be here at work, wearing pajamas…and sweating through them.
Done with the negativity for now. Moving on!
I’m thankful knowing I will be healthy again. I have no idea when, but that’s just how I’ve learned to look at this whole thing over the past two years. I get sick and it’s the worst, and then I get better and it’s amazing. I’ll deal with the bad times because I know the good ones are coming.
And hey, thanks for sticking around in the meantime.
BE THANKFUL FOR EVERYTHING BECAUSE IT’S GOOD FOR YOU: What are you into today? Please don’t shove your amazing workouts in my face. Instead tell me about your rest days and the carton of ice cream you had for dinner. Or, you know, tell me about how you, too, have an inconveniently annoying disease and how you’re thankful because you know exactly how to handle the emotional side of it. You could also tell me which Netflix options you’re thankful for, since I’m spending a lot of time plowing through my those when I can’t sleep at night. Thanks!