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I’ve been wanting to write for a while.
A big reason I haven’t been posting — so much for that “groove” I thought I’d hit — is that I simply don’t have time.
A bigger reason for the absence is that I feel like I’m in a state of adjustment right now. A state of “waiting for everything to settle.” The big changes — the new job, the new medicine — have happened already. Now I’m letting them all sink in.
This “place of adjustment” isn’t a bad place to be. It’s just a place without many absolutes. And I used to really love my absolutes and my guarantees and my sure things.
I’ll break it down for you…
Each day, I’m figuring out exactly what my job entails (a little of everything, it seems?). I’m also doing a decent amount of freelance work on the side, writing for my old company and other media outlets. So balance is a thing I have yet to find. But I love my new commute, I adore many of my coworkers and I like wearing workout clothes to the office.
So many of the people I work with are badass athletes, so it should come as no surprise that the words “triathlon?” and “training plan” and “fall marathon” are dancing around in my head.
I feel good! At my appointment yesterday, I told my doctor, “I feel really good. Not good like ‘normal person good,’ but good for me. Good for someone with Crohn’s disease.”
On the one hand, that’s awesome. I feel 600 times better than I did three months ago, and 832 times better than I did a year ago. The positive change from where I was one year ago — firmly planted at rock bottom — is monumental. I am so obnoxiously grateful to feel this healthy. I can leave my apartment, I can run, I can race, I can go places without panic attacks. It is all such a relief.
On the other hand, it’s a bummer that I have to quantify things as “good enough” and “as good as it gets for someone with a chronic illness.” That frustrates me, because I know that “normal” people still get to feel so much better than I feel at my best, but I’m trying not to dwell on that. What’s the point? I can’t remember the last time I felt as healthy as I do now, so I will absolutely take it.
THE CLINICAL TRIAL & THE METHOTREXATE.
The total duration of the study I’m enrolled in is 112 weeks. I’m only a few months in so far. I won’t find out until the study is over whether I started with the drug or the placebo, but all patients enrolled in the trial are now guaranteed to receive the drug, so yay. And, clearly, it seems to be working!
I go to the doctor every four weeks now to receive three injections of the mystery drug (its study name is MEDI2070). They take my vitals and draw lots of blood, I take a pregnancy test (every time — no babies allowed in the study!), and then the doctor comes in to chat with me and do the routine examinations. Granted these days our chats are more about running (he’s training for his first marathon!!!) than Crohn’s, but that’s just fine. Then, the doctor gives me the three shots in my stomach and I stay to be monitored in the office for 30 minutes to six hours (depending on the visit).
Each appointment has to happen during a certain time period, so there’s no flexibility, which can make scheduling tough, especially since I am new at work and don’t want to be out at all. But…the drug is working. And a great lesson I’ve learned in the past two years is that you absolutely must make your health a priority over all other things.
If you recall, I started taking methotrexate back in December. Methotrexate is, in easily-explainable form, a chemotherapy drug. And I hate it. It’s an injection I give myself every week, and once I started doing it myself in January, I was OK with it for a while.
I’m not OK with it anymore. It’s such a potent drug and it makes me so nauseated (thank you to all the people who helped me learn the difference between “nauseous” and “nauseated”; I hope I did it right here).
A few weeks ago, I ran to the bathroom to vomit before I even gave myself the shot. I talked to my doctor about this, and he said this is common in chemotherapy patients in particular. They associate the smell of the alcohol swabs, for example, with the eventual feelings of nausea, and there’s a preemptive physical reaction. I have to seriously psych myself up to do these weekly shots now.
Considering that the methotrexate didn’t even seem to work on its own, you’d think I could come off it, right? But no! Since I was on the drug when I was enrolled in the study, I have to stay on it for the duration (the aforementioned 112 weeks). This upsets me. I hate that I am putting so much seemingly useless poison into my body every week. I try not to think about it too much. I also try not to secretly stop taking it, which is very tempting.
WHEN IT COMES TO RUNNING…
It’s wonderful. It’s amazing. I’ve run three races now without having to make any bathroom stops.
My weekly mileage is creeping up. This past weekend, I decided I wanted to go see The Little Red Lighthouse, and I decided to run there. It turned into an 18.5-mile trip and I felt great the whole time.
Because I’m feeling good, and because I live in The Land of Eternal Optimism, I’m registered for a fall marathon. I fully recognize that getting to the start line isn’t a guarantee in this roller-coaster-y life of mine, but I want to give it my best shot. I want to train. I want to try to get fast.
And I’m figuring out what my body can handle, how long I need to recover, and how hard I can push myself. I haven’t done anything speed-related yet, but I’ve slowly upped the miles, and so far my body is cooperating. Good job, body. Don’t screw this up for me.
Then, on Sunday, I hopped on my neglected bike and tagged along with Brian on his ride to Piermont. I thought my legs would be dead after Saturday’s run, but I actually felt decent and was able to hang with him for most of the ride (he might disagree and admit that he “waited for me at the top of every hill,” but he’s not here to defend himself).
MEANWHILE, IN THE YOGA STUDIO…
As I came back from this latest Crohn’s flare, my body started to change in every way possible. My biggest struggle was that I felt heavier; that I had more skin in the way. The twisting poses were suddenly difficult because my hips, thighs and added inches were getting in my way. I felt that my changing body was holding me back, and it was frustrating. All the poses I used to be able to do with moderate ease (because really, yoga is never actually easy for me) were now more difficult, simply because my body was “in the way.”
But I’ve adjusted. The skin is still there, but I can adjust for it. I can make it work.
I have found something of a sanctuary in my yoga practice. [File under “words I never thought I’d string together.”] I think I get why it’s called a practice: You’re always working on it. There’s always room to improve. There’s no “big game” at the end. Each pose can be made stronger, deeper, more advanced.
I’m starting to work on poses that terrify me (I can’t not picture my neck snapping in headstand…and yet Bethany had me demonstrate tripod headstand for a full class the other day), my crow is solid almost every time, and last Friday I did some pose where I lifted my leg straight out in front of me and then shifted it to the side and I didn’t fall and my leg when high like when I used to dance for six hours a day. Progress!
And mentally, I mean…that goes without saying. Yoga is keeping me sweaty and sane.
I touched on it above. My body is changing. A lot. I’m basically like a pubescent teenager, and those are not times I wish to revisit.
When I get very sick, I drop a ton of weight seemingly overnight. I lose all my hard-earned muscle, my clothes hang off me and I look pretty sickly. Then, when I start to get healthy again, the weight comes back, but again it happens seemingly overnight. The problem isn’t the weight gain; it’s the shocking pace at which it happens.
The weight gain is essentially good. It’s what the doctors want to happen. But for your body to change so fast, so many times…it’s a lot to handle, physically and mentally. I wish I could just roll with it and understand that it’s part of having this disease, but it’s not easy.
Right now, I’m in the “gaining weight at what feels like rapid speed” phase. I try not to weigh myself regularly at home, because I know very little will come of that. But everything feels different. And while I don’t necessarily care about the number on the scale, I do care that everything looks and feels really different.
Again, this “issue” is twofold: On the one hand, I’m gaining weight because I’m finally healthy! I lost a lot of weight when I was very sick, and now my body is finally absorbing and holding on to every bit of food it can get. That’s a good thing. But what I don’t love is that it seems like some additional weight gain might be a side effect of the study drug. That’s what makes this tough to accept — that I don’t know what’s fully going on with my body. I love having a drug that’s working for me, but I hate being the guinea pig. I don’t know if the weight gain is just from getting healthy again, or if it’s being aided by the medicine. (This translates, yet again, to “I don’t feel like I have complete control of my own body.”)
Plus, considering the constant ups and downs my body has seen over the past two or so years, it’s hard to even know what my “normal” weight or size should be. And I’m not “beating myself up” or being “too hard on myself.” I’m just trying to figure out what my normal is.
So far, it seems like the other “potential side effects” for the study drug are acne (cute!) and nausea. My doctor has said that weight gain is very likely a side effect, and that my body should have stabilized by now, but I am continuing to gain. Hmmm.
I was really upset about this for a while. It was all I could think about. My clothes stopped fitting, I hated how I looked and I was completely focused on this one aspect of my life 100% of the time, despite the fact that, like I keep saying, I was feeling better. Physically I was getting healthy, but mentally I was a bit of a mess.
Then Brian and I had a heartfelt chat about it, and now I’m moving forward.
I wish I had better control of my body, but I also love being healthy. So a few weeks ago, I finally sucked it up and bought some bigger-sized clothes, instead of feeling annoyed that my old ones didn’t fit the way they used to. And I felt happy that I was out shopping and didn’t have to do it online because I was too sick. See? Eternal optimist.
Robyn wrote a great post about similar feelings a few months ago. She’s a bit more eloquent than I seem to be. Check it out.
All this to say there’s a lot of transition, a lot of adjusting, and a lot of gratitude even during the times that still feel challenging.
Living with this disease — even when it isn’t ever-present — is not easy. I am sorry this post was so long. Are you still there?
I love you.
I love running.
I love crepes.
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