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For the past few weeks — months, maybe? — I’ve had this feeling I just can’t shake. It’s new to me and it’s weird, and I’m hoping writing it out might help. Let’s see where this ends up…
I feel claustrophobic in my own life and in my own skin.
There have been days lately where I literally find myself squirming in my chair because I feel like I need to break free. From what? I’m not exactly sure. I’m trying to figure that out.
As we all know too well by now, this hasn’t been my best year. It’s been almost a year straight now that I’ve been sick. The first flare-up feelings began last January. I remember it so clearly: I was at a dance show with my friend Michael on the Upper West Side. I had to leave at intermission because my stomach hurt so badly, and I locked myself in a bathroom stall in the theater for a while before I felt OK enough to make the crosstown trek home.
And I just haven’t gotten better.
I started to. I think the combination of Humira + 6mp + budesonide + medical leave from work started to kick in, and as I finally let myself relax a bit outside the office, my body started to heal.
So I went back to work the minute things perked up ever-so-slightly.
I know I went back too soon.
I went back, and there was a lot happening. It was a very busy time of year, plus there was a lot of turnover happening. On top of that, I had far-fetched dreams of running a marathon in the near future.
It was too much. My body told me so. Because after the initial “Hey I think I’m feeling better!” waned, I never actually got better.
The week before the marathon, my doctor doped me up on everything legal and nothing fun. We wanted to try anything that might help me get through 26.2 miles with a little less discomfort. I did four shots of Humira in one day, plus a short, high course of prednisone starting at 80 mg/day (for reference, that’s a lot) and then tapering down quickly so I’d be off the drugs on Marathon Day (running while on prednisone isn’t ideal and can lead to injuries or whatever blah blah). I was also given suppositories, which are always a blasty blast.
I loved tapering before the marathon because I enjoyed the extra time not trying to run and hiding out in the bathrooms in Central Park as needed. I got a lot of sleep and I tackled some exciting home projects. (I built a bookshelf! No, but I did order one from Target and then paid the apartment handyman to put it together for me while I was at work. And then I told Brian I built it myself. He believed me. What a handsome fool.) I relaxed and I caught up on a ton of stuff at work. It was good. I felt happy.
And then marathon day came, and it was perfect and wonderful.
Soon, though, the marathon excitement settled down and I was back to feeling, essentially, depressed. And I still feel that way. I was depressed for a long time this year — something I keep wanting to write about but, again, am having a hard time letting out — and I thought I was past all that.
But I’m not. I know I’m not.
I have never felt this overwhelmed before. I keep trying to put it on paper: “What I’m unhappy about” in Column A, and “How I can take action” in Column B. But the thought of starting that is exhausting. It makes me just want to lie down.
I’ve done a lot of lying down lately. I don’t do morning workouts anymore. My stomach hurts too much in the mornings, so it’s not worth it. And I don’t do many after-work workouts, either. I’m tired. I’m always tired. I was at the doctor last week (and the week before that), and my iron and albumin levels are fine. So I can’t even “blame the iron.” It’s just me.
I eat crap all day every day. I don’t eat vegetables, save for the occasional baby carrot, and there’s some form of chocolate in 90% of my meals and snacks. Most of my clothes don’t fit anymore.
I’ve also been antisocial. I don’t feel like seeing people or talking to people. I don’t want to make conversation. I just want to sleep.
But back to Columns A and B.
It all boils down to essentially one thing: “I’m unhappy that I haven’t felt healthy and been able to live my life for a full year.”
I don’t know what to put in Column B.
I’m done with the Humira and 6mp. The doctor said they’re “clearly not working.” He wants me on Stelara, which has a strong success rate with Crohn’s and colitis patients who haven’t found success with other drugs like Remicade and Humira. So that’s me! But Stelara is only insurance-approved for patients with psoriasis…which I don’t have. So I can’t get that. And then there are the very effective fecal transplants, which are exactly as sexy as they sound. My doctor is dying to do this for me — but it’s only approved by the “shitty FDA” (doc’s words, not mine, but I love them) for patients with C-DIFF which, again, I don’t have. Plus, as my doctor said, “If any of these were the best option, we would have found a way to do them already.”
Basically, the drugs and treatments exist. They’re being dangled in front of me. But I can’t have them. So right now I’m on nothing, and as soon as my pharmacy gets its shit together, I’ll start on methotrexate…which I thought was a pill but it’s another thing I’ll have to inject myself (this time with a much scarier syringe, as opposed to an epi-pen-type situation). Next year I may be able to enroll in a clinical trial — but then, of course, you run the risk of getting a placebo.
I finally feel like I know what questions to ask when I see my doctor, but I hate all the answers. And it’s not his fault. It’s the pharma companies, the insurance companies and that shitty FDA.
I know that if I felt better, most other things would fall into place. Or I’d at least feel motivated to move the pieces around to make them fit.
I’d be able to run! I wouldn’t feel so bloated, crampy and in pain all the time! I could eat broccoli! I could leave the apartment without needing to map out every bathroom on the way to my destination! I’d be in control of my own life.
In the meantime, I’m desperate for an escape.
I feel like I am crawling around in my own skin, and it’s an incredibly uncomfortable feeling. I curse New York City daily — when people slam into me carelessly on the sidewalk and I take an aggressive elbow to the rib, or on the crowded subways where people won’t just move in or, better yet, wait for the next, significantly less crowded train.
Everything started coming to a scary head this past week. I felt anxious every day, and on Monday morning I cried the entire way into work. By the time I got to the weekend, Operation Meltdown was almost in full effect.
So Brian and I fled for the weekend.
We went out to the North Fork of Long Island, which is one of my happiest places. We didn’t do anything extravagant or fancy. We just spent a night in a Hilton Hotel, walked around the outlets a bit on Sunday and ate a lot of cookies, pie and chocolate candy. The closest I came to breaking a sweat was running across the street last night trying to find whipped cream for the pie we wanted to eat after we polished off our cheeseburgers.
I was so happy all weekend. I loved relaxing and being away from everything. I didn’t feel amazing, but I didn’t really care.
As soon as we got back last night, all those feelings of anxiety returned. I couldn’t sleep, and I woke up this morning feeling frantic.
I want — need? — to leave for a while. I want to go somewhere far away. Somewhere without work or bills or health problems or the internet. I want to really relax and figure out what I want and need from life.
Ultimately, I know I’ll be fine. Eventually. Somehow. Not sure when.
I also know that in the spirit of Thanksgiving I can still rattle off a list of things I’m grateful for. Tyler, mostly.
And the fact that in the midst of this all, I did get to forget it all for 3 hours and 58 minutes just a few weeks ago.
So it’s not all bad.
Now, has all this happened to you? Maybe not with the Crohn’s stuff, but a little reassurance? Anyone? If just one person can be like, “Yeah, I felt that exact same way for a while and then here is how I suddenly felt 100% better and here’s how you can, too, Ali!”…that would be great.
(And for a girl who never gets writer’s block and can always find something to ramble about…I’m not sure any of this made any sense. Sorry about that.)
Edited to add this little note: Before you diagnose me with something or tell me to “see someone,” remember that what I write on this blog is only a little piece of my life. There’s lots more going on right now, plenty of which is good. This post was just to try to write things out a bit. Thanks for reading! Hi!