- 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 18 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 18 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 18 hours ago ReplyRetweetFavorite
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“When you’ve been sick for so long, you forget what it feels like to be healthy.”
Wise words from my friend Jess, who also happens to have Crohn’s-Colitis, the disease of digestive underachievers everywhere.
Back in May, when I was in “Desperately Seeking Doctor” mode, Jess called me to help me out with my quest for a new doctor and my miracle drug (still searching for that second one). When some people offer advice regarding this disease, I’m completely unreceptive. Unless you’ve been in my exact situation, I just don’t want your “genius tips.” Thank you for trying, but also no thank you.
Jess, however, gets it.
We met back in 2009, when we had both signed up for our first half marathons — Napa to Sonoma — with Team Challenge, and she was the first and only person I ever knew who had been diagnosed with both Crohn’s and Ulcerative Colitis. Way to go, Jess!
My point: What Jess said to me on the phone back in May really stuck with me.
I have been sick for so long that I’m having a hard time remembering what my “normal” life is like. Since January, my days have revolved around trips to the bathroom, visits to the doctor, pills, IVs, steroids, tears, more trips to the bathroom, medical bills, missed days at work, ruined vacations, missed vacations, ruined runs, missed runs, missed races and essentially watching my life and the things I love slip away.
Plus more trips to the bathroom. And more medical bills. And thus more tears.
Lately, though, I’ve gotten a few glimpses of what my former life used to be like, and I must say, it’s been kind of amazing.
Last weekend, Brian and I went to Bob’s Discount Furniture to finally buy a new couch — something I’ve wanted to do for a long time.
I hated our previous couch. I spent entire days laying on that couch, with chills and then sweating as my fever broke. I spent nights sleeping on the couch so I wouldn’t wake Brian with my every-five-minute bathroom trips. I never got off the couch except to use the bathroom, and eventually I associated the couch — “The Crohn’s Couch” — with being sick. I couldn’t wait to get rid of it.
We also bought a new friend for our apartment. I love him and he brings joy to my life every day.
After we got our new couch (yay!!!), we decided to go out to dinner — another thing I refused to do for a long time because I couldn’t leave the apartment. As we crossed the street to get to the restaurant, we held hands and we were laughing and I just remember thinking, “This is what my life used to be like.” It was like this miraculous glimpse — a wake-up call — and a reminder of what things could get back to when…if…my disease ever goes into remission.
And now we have a new couch, and it doesn’t remind me of Crohn’s or fevers or misery. I want to sit on it forever.
There have been other glimpses of a return to what I think “normalcy” is like…
I’ve gone to work events. Summer is a busy time for dancers, and while I’m still technically on medical leave, I have forced myself into a fancy dress a few times to go support my favorite dancers.
I’ve done the dishes, swept the floors and done some serious dusting. I hated that when I was at my sickness peak, I was home all day but the apartment was a devastating mess. Brian and I even did something I swore I would never do: We hired a cleaning service. And the worst part was that when the cleaning people came, I would be sitting on the couch while they worked. I was too sick, too exhausted and too useless to be able to clean, and I hated that someone else had to do it for us. Now I’m back in control of the Lysol Wipes and it’s wonderfully empowering.
I’ve gone for walks and made pit stops to ride rides. Yeah, that happened.
I’ve gotten back on my bike!!! Cycling is so much gentler on my stomach than running. I’ve taken the Lexa out a few times in the past two weeks and I’ve remembered how much I love clipping in and pedaling my way around Central Park. I even tried to get Brian to sign up for another century ride with me, but it’s a month away and he suggested that’s “not a good idea.” At least it shows my return to optimism and positivity? Or sheer delusion…
The doctors love giving me drugs, and they think that each dose of whatever is going to aid me on the road to recovery. But I think they’re wrong. I think the real medicine I’ve needed is a little bit of laughter, a hefty dose of fresh air and a perfect escape from New York City.
Last Thursday night, I ventured out of the apartment to watch my friends compete in their Dizzy Bat competition in Central Park.
I loved being out, I loved seeing people I haven’t seen in so long and, best of all, I loved laughing harder than I can remember laughing all year. It just felt so good.
As they wrapped up their dizzy batting and headed to the bar, I decided to walk around the park.
I happened to be wearing new running shoes I ordered months ago and hadn’t taken out of the box. They paired well with the giant goofy grin I was wearing.
When I found myself at Engineers’ Gate facing south, I decided to turn my walk into a run.
I ran to Cleopatra’s Needle, and then down Cat Hill. I turned right onto the 72nd Street Transverse and saw my long-lost friend Lindsay. I kept running, goofy grin firmly in place. I ran a full lower loop of the park, and when I faced Cat Hill again — this time from the bottom of the hill — I kept running.
Soon I was back at Engineers’ Gate.
I had run a full lower loop of the park and back without stopping.
I visited Bernie’s Bench to tell him all about my run, and then I ran home.
I ran 4.42 miles.
I used zero bathrooms along the way.
On Friday, I hopped on board the Seastreak ferry bound for New Jersey.
I spent the weekend in a state of ultimate relaxation at my friends Kristan and Will’s beach house. We beached, we pooled, we (I) napped furiously and we went to a concert on the beach.
Best of all?
On Saturday morning, Kristan took me to a trail that has a name that I can’t remember.
Kristan is a 2:53 debut marathoner. We did not run together.
I ran mostly alone, with the company of my buddy Steve for the last mile or so.
I had to make two bathroom stops, which I wasn’t thrilled about. It was a hot morning and I felt dehydrated.
But that goofy grin was back and I couldn’t seem to wipe it away.
It was there during my first mile.
And it was there when I finished my sixth mile.
A few weeks ago, I ran for the first time since getting sick. I ran 1.57 miles around the Reservoir, and my average pace was somewhere around an 11:45-minute-mile.
One week later, I tried to run around the Reservoir again and failed miserably.
One day later, I tried again and failed. Again.
I was heartbroken, frustrated and convinced I would never be strong enough to run like I used to.
Last week, I decided I definitely would not be running the Wineglass Marathon in October. I’m absolutely fine with that decision. After all, I’m still registered for another kind of big race in November.
Then, on Saturday, July 20, I ran six miles.
I ran six perfect miles with good friends waiting for me in the parking lot when I was done.
I ran six miles in just under 54 minutes.*
Don’t call it a comeback. Not yet.
Just call it a glimpse of something really, really good.
*No, I’m not running with a watch. No, I’m not running for time. No, I don’t actually care about my paces. I had the MapMyRun app running on my phone to keep track of my distance, but didn’t check the time or pace until I was done. I don’t have a training plan or a goal or anything in mind other than “run when you can and enjoy it.” Relax. I’ll do the same. Go team!