I’m glad I got to write two ultra-happy posts in a row, because since then things have begun to deteriorate.
The past week has been a rough one filled with many many embarrassingly frantic bathroom runs (shout-outs to the Starbucks on 96th Street, the tennis court bathrooms in Central Park, the tennis court bathrooms in Central Park twice more, the church on 90th and 5th, and Excel Hair Salon on Third Avenue!), many many tears (including some especially hysterical, can’t-breathe ones at Engineers’ Gate after a particularly frustrating run attempt, and some more in the pouring rain outside the tennis court bathrooms partway through a second failed run try), and the maddening return of that 102-degree fever and night sweats.
Oh, and the other day, during one of my many early-morning bathroom trips, I got stuck in the bathroom. The maintenance company was thrilled with me.
It could have been worse: I could have been locked out of the bathroom.
I went to the doctor yesterday for my weekly iron and albumin infusions and when the P.A. came in, she simply said, “I don’t need to ask you how you feel — I know from looking at your bloodwork how you feel.”
My hemoglobin is back in that “dangerously low” area and my albumin levels aren’t coming up either.
I’m still taking the Humira weekly, but only until I can transition to the next drug my doctor wants me on, which is Stelara and which, naturally, my insurance company refuses to approve. (If I’ve learned anything throughout this ordeal, it’s that your doctor may make the best decisions for how to treat your disease, but ultimately the insurance company is the one calling the shots. Bullshit? I think so.)
Stelara, an injection you receive a few times a month, comes at the very reasonable cost of just $15,000 a pop without insurance coverage.
Although the doctor assured me yesterday that they’re in the process of appealing to the insurance company for a third time “using nasty words,” the doctor was very honest about the fact that I’m unlikely to get this drug. Hooray for healthcare!
In the meantime, I’ll be going into the doctor’s office twice a week for iron and albumin and I’m starting on a steroid, Uceris, that specifically targets the colon and should “help with the pain, cramping and urgency.” I’ll believe it when I see it.
It’s really, really difficult to be positive right now. I had a two-week run where I thought I was getting better and I finally felt so optimistic, and then last night was the worst night I’ve had in a month.
I haven’t been able to run, I’ve only been back to work one day (yesterday) for a few hours, and I’m so tired of my body fighting me.
And I’ve gotta be honest, it kills me sitting in my apartment while everyone complains about running in this heat.
Oh I’m sorry the conditions aren’t perfect for your run! But were you able to run? Could you leave your apartment? Did you manage not to um, use your shorts as a bathroom?
Then stop complaining.
You’re physically able to run.
Sorry the weather is making you a little extra sweaty.
Speaking of sweaty.
I’ve always claimed I can be perked up at least temporarily by making someone else happy.
So today seems like a good day for a giveaway, don’t you think?
I’ve got a few I Heart Sweat shirts up for grabs!
Entering, as always, is going to be wicked easy.
Just leave a comment on this post telling me the most important lesson you’ve learned in your life.
A few examples, in case you are confused or need some guidance and inspiration:
- I learned the difference between you’re and your!
- I learned the difference between there, their and they’re!
- I learned that I can’t eat corn and should avoid it at all costs!
- I learned that credit cards are not “fake money.”
- I learned that 75% of people will, at some point in their lives, get hemorrhoids. Ask around. You’ll see.
- I learned that no one, no matter how old you are, takes care of you like your mom. No grilled cheese sandwiches will ever compare to hers.
- I learned that the people who love you will love you no matter what. This means you can have a grotesquely embarrassing digestive disease and they will stick around. Lucky you!
- I learned that your health is the most important thing you have.
I’ll pick however many winners I want, because I make the rules, on Thursday, July 11, at 9 AM EST.
Good luck, and please remember…
You don’t have to run. You don’t have to train for a fall marathon. You don’t have to get out the door for a tempo run at 5 AM.
You get to do all those things.
I’ll preach all I want. Don’t take your health for granted. Appreciate every single thing you can do every day.
Happy sweating and good luck!