A few weeks ago, I was diagnosed with Rheumatoid Arthritis.
I kept saying that sentence to myself in my car on my way home from the rheumatologist, and then I called all of my closest family members. When I talked to them, I kept repeating that this was good: to have a diagnosis was good, to have a plan was good. Good.
Rheumatoid Arthritis is an autoimmune disease. In the crudest terms, it means that my immune system is eating my bones. I am lucky in that it’s currently not showing up in my blood tests, which means I have a higher chance of going into remission at some point in my life. However, we only needed to do x-rays (no ultra sounds or an MRI) to have evidence of clear bone erosion in my wrists and my hands.
Of course, after trying desperately to live and not drown in the mire of the unknown, I made a long-ass list of questions for my doctor:
- What the hell is erosion anyway? Maybe I do want to know how bad it is. Maybe I do want those further expensive tests. Is it just going to keep showing up in my whole body, slowly progressing?
- Are my feet really okay? I’m still running. Should I get better shoes? What about braces? I can get braces for everything.
- Oh god. Swimming is probably bad, too! Can you tell me that swimming is okay? (Don’t worry! Swimming is actually the best excuse for RA. My life is saved.)
- I assumed I could keep lifting weights. I don’t think my coach thinks so. He’s thinks I’m overly optimistic. Can’t I just wear like wrist braces to prevent further damage? What if I fling a kettle ball across the room and take someone out because my grip is so unpredictable?
- What will cause flare ups? Is this a flare up? Or will my body just continue eating my bones unless we make it stop? Once we get it to stop eating my bones will it start again? What if I get a cold? Which I’m more likely to if I take the RA drugs, right?
- I’m not good at figuring out my own pain. Did I tell you I ran most of a half marathon on a broken foot? My feet are okay, right? Can I run a half in the fall? Probably not, but I’m probably going to.
(I didn’t actually send these in this form, but I did send a well-composed long list of questions.)
Shortly after my diagnosis, I made it to a hot yoga class, even though as I was driving there, I realized there were probably a lot of the poses that would be too hard on my wrists.
- Can I still do yoga? My back is really flexible. What about full-wheel pose? Wouldn’t that put pressure on my wrists? That hurts sometimes, but I feel really strong when I can do it. I’ve never been good at pigeon, but I don’t think that really is because of my wrists. So hand stands will never be an option for me? I can stop pretending to want to do them? You know my hips hurt a lot? I notice this at yoga. Should we MRI my hips? What about my hips? Yoga?
And I was so that girl at yoga: I was 10 minutes late, I spread my extra-wide mat out in about two spaces, didn’t even straighten it, accidentally took the person to the left’s strap, farted at least twice, and on and on. (Isn’t it funny how we always remember exactly how many times we fart at yoga? I get home, and Dan’s like, “How was yoga?” And my answer is either, “I didn’t fart at all!” Or, “Why did we put so much cheese on those grilled cheese sandwiches?”) Anyway, about 20 minutes into that first yoga practice post-diagnosis, I was checking in with every move, every wiggle of my wrists (tenderness? swelling? pain? bad pain?), and the yoga instructor said, “Remember it’s a process. You’re not going to get it all right the first time.”
And I crumpled into child’s pose, ugly-girl-crying. Fortunately, it was hot yoga, so no one knew. Everyone was dripping with sweat and breathing like pugs on a too hot afternoon and the “power beats” playlist was rocking.
I just laid there, sobbing, and let it not be okay.
The yoga instructor reminded me that I am sure as hell not going to figure out how to live with RA in the first few weeks. (I mean, it took 4 days for me to find out if my kidneys and liver were strong enough to start taking a pill that might stop my immune system from eating my own bones in 8-12 weeks.)
I am the sort of person who wants to know everything before I start something. I don’t want to mess up. I don’t want to get halfway in and figure out I should have started differently. Part of that is my personality, but I also think part of it is just how people respond. Many of the people I've told want to offer concrete suggestions: Yes, I’m taking fish oil. No, glucosamine chondroitin won’t actually help with this. Yes, I’ll look at my diet.
Here’s the deal: my body is eating my bones. We’re trying to slow down the amount of damage it’s causing. We need something to slow it down quickly. So yes, fish oil and diet will absolutely help in the future, but the current goal is to get my immune system to stop attacking my bones. And for real, working full- and part-time jobs, writing, creating a life I love, monitoring my body, resting, trying to still get in some workouts (although triathlons are probably out this year), and getting used to all of these new medicines is enough for right now.
I’d been obsessing and trying to figure it all out. And I was telling people I was more confident than I was. I wanted to get this all right the first time, so that in a few months, someone wouldn’t tell me that “Oh, you should have been….” Or that in a year, someone wouldn’t say, “You know, she really isn’t taking care of herself.” But you know what? That’s going to happen no matter how hard I try to get it all right.