- I want to appreciate "big pharma" for creating this medicine that seems to work for me, but my god... There has to be a better way. about 21 hours ago ReplyRetweetFavorite
- So thank goodness for insurance. It's still too expensive, but drug companies charing $55,000 for a one-time-use drug??? That is sick. about 21 hours ago ReplyRetweetFavorite
- Just got the hospital bill for my 1st Stelara infusion. Billed at $55,000. (Insurance covered all but $1,050, phew.) Still, THAT IS F*CKED. about 21 hours ago ReplyRetweetFavorite
- October 26, 2012 by AliPlease Let Me Make Your Day (That Means A Giveaway!)
- June 15, 2012 by AliMonday. 9 AM. Get Sweaty. (And For Now: A Giveaway!)
- August 10, 2012 by AliTake My Sweat (It's A Giveaway & It's Not Gross)
- May 25, 2012 by AliDo You Want Free Sneakers? (Translation: A Giveaway!)
- July 9, 2013 by AliEmbrace The Sweat (An "I Heart Sweat" Shirt Giveaway!)
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My Return To Optimism
I remember going for a run in New Jersey on July 4th of this year. I was on a mini-vacation with friends and my stomach felt off. Still, I tried to run with my speedy lady friends as best I could, because when there’s a path along the beach, you should run on it no matter what. But after two fast-for-me miles, I had to pull away from the group so I could spend some time in the beach-side bathroom.
Since that day, exactly two months ago, I felt sick.
I felt sick every single day.
I woke up every morning with a cramped, rumbling stomach.
I ate every meal with apprehension, never knowing how it would digest.
I used up every sick day I had left at work, and tacked on a lot of work-from-home-slash-the-bathroom days, too.
When I tried to run, whether it was four miles or 14, I made countless stops at the tennis court bathrooms, the Boathouse bathrooms and, when it got really really bad, the make-your-own bathrooms known as “the woods.”
I grew more frustrated every day. I spent my entire summer feeling sick, never wanting to make plans with people because I knew I’d end up bailing on account of “the Crohn’s thing.” I didn’t take vacations, and I rarely left my apartment, let alone the city. I was constantly fatigued, irritable and in pain. And marathon training?
Well, marathon training wasn’t exactly happening as I’d hoped.
All the frustration with being sick culminated in a three-day stay at Mount Sinai Medical Center.
The three days I spent in the hospital were awful. I hated it there. I hated the tests. I hated getting stuck with needles every hour. I hated the nurses who never seemed to have a clue what was going on and kept bringing me the wrong medications. I hated the “food” they allowed me to have.
But the whole time I was there, I tried to tell myself being admitted was for the best. The doctors were going to take a close look inside my intestines and my colon, and they were going to figure things out. Yeah, the barium was disgusting. Yeah, I puked it up. And yeah, the colonoscopy juice was gross, and yeah I vomited a lot of that as well.
I spent every single minute in that hospital wishing I could escape.
After 20 years with this disease and two straight months of feeling painfully ill, I’d started having a hard time seeing the light at the end of the tunnel. I had convinced myself that this was my new life: sleepless nights, constant stomach cramping, joint pain, no appetite, no more running, no social life, no fun and way too much urgent time in the bathroom.
The doctors weren’t having it, though. They took their fancy cameras, and they checked out my little bowels and my big bowels (does anyone else find the word “bowel” to be ugly?).
“It’s all great news.”
My doctor and his right-hand-man (really just another doctor who happened to be the one to perform my colonoscopy) both spent a lot of time talking with me on Friday to explain what they saw. They both seemed optimistic and they had a plan. They saw the disease, they prescribed new medications and we’re going to take it all slowly. I have to “be patient” because there’s “no overnight cure.” But I’m OK with that.
Dr. Half Marathoner even said “this plan will give you a great shot at running the marathon.”
I was skeptical, of course, because I’ve been on plenty of medications in the past and they haven’t worked. Clearly. But these doctors are new to me, and they’re cuter than doctors I’ve had in the past which must mean they know what’s up.
I stayed in the hospital all day Friday getting my Remicade infusion while I Skyped with Tyler & Co.
Finally, at 10 PM on Friday, Nurse Edward came to my room armed with my discharge paperwork and a handful of prescriptions.
I was free to leave.
Truthfully, I was so happy to get out of the hospital but I was also a little discouraged to be leaving feeling just as shitty as I was when I got there. Yeah, I’d endured all the tests and I had a plan going forward. But I guess I kind of expected to walk out of Mount Sinai feeling at least a little bit better.
On Saturday, I avoided social media and stayed in bed until 1 PM.
I didn’t feel better.
I took all my pills, I refused to look at my Garmin or my Brooks, and I was nervous about starting to eat solid foods again. I just felt sort of weird.
Then, I woke up Sunday and felt OK.
But not terrible.
And after two months of terrible, I’ll take OK.
As the day went on, I continued to feel OK. I showered. I washed my hair. I even made it to that wedding in New Jersey.
I didn’t drink and I was careful about what I ate all night. I didn’t want to miss the good stuff on account of being in the bathroom. And I made it through just fine. I even danced, and everyone thought I was wasted, but really I’m just an awful dancer.
It ended up being a great night, and for just a few hours I forgot about the hospital and forgot about the fact that just a few days prior I’d been downing colonoscopy potion and was chained to the bathroom.
We didn’t get back to the city until late Sunday night.
On Monday, I slept in again. I didn’t set an alarm all weekend, which was definitely necessary.
I woke up and felt more OK than the day before.
Eventually, I felt OK enough to look at my Brooks. I felt OK enough to put them on and I felt OK enough to take them out for a gentle, doctor-approved spin around Central Park.
I ran slowly and I certainly didn’t run the 18–20 miles the rest of my New York City Marathon-training friends were out running this weekend.
But I ran.
And I felt OK.
I didn’t make a million bathroom stops.
In fact, I only made one.
I didn’t run far and I didn’t run fast. But for a few miles, I felt like myself again.
It has been a long, long road and for months I have let this disease totally kick my ass. I’ve felt sad, I’ve felt frustrated and I’ve felt a kind of agony that I never thought I’d feel from a lame digestive disease. I’ve wanted to give up. I’ve wanted to just quit trying to figure things out and I’ve wanted to stay in bed all day. (OK, I still kind of want to stay in bed all day, because that sounds awesome.)
But not anymore.
I’m not “fixed.” I’m certainly not “cured.” I’m not even fully better yet.
I finally know that I will be, though. I’ll be OK. It may take some time. It may take some trial and error. It may take more Remicade and someday down the road it may take another hospital stay and more tests.
For two months, I was convinced I would never get better.
My optimism is back, now. And I think healthy days are right around the corner.
In case my words are not enough proof that I am, in fact, returning to my regular mental state of “happy,” here are two cute things:
I’m off to have a great day. I hope you’re planning to do the same.
And truly, from the bottom of my sick-but-getting-better heart, thank you for the incredible kindness over these past few days. The Tweets, the emails, the puppy photos — you all made me feel very loved and slightly less sick, and I appreciate it so much. I’m a lucky, lucky girl. Hugs for everyone.