I was diagnosed with juvenile rheumatoid arthritis (JRA) when I was two years old. That’s what it was called at the time; now, it’s juvenile idiopathic arthritis (JIA), as in juvenile we-have-no-fucking-idea-where-this-comes-from-or-why-you-have-it arthritis. I like the old name better.
We were living in Denver, Colorado, which is where I was born. My mother and father were still married to each other. I was still an only child. I was two and limping, my little right knee red and swollen. My parents took me to a family doctor, who made the diagnosis and prescribed baby aspirin. The things they read about JRA were terrifying; my mother worried I “would end up in a wheelchair or worse.”
When I was growing up, not a lot was known about juvenile arthritis, and treatment options were much more limited than they are today (though there was more aggressive treatment than baby aspirin to be sure). And my parents being my parents didn’t take me to see a rheumatologist until I was 13, at which point many of my bones–including my cervical spine, hands, and elbows–had already fused. It’s the kind of damage that has the potential to be prevented but can’t be reversed. It’s why I can’t make a fist, why I can’t fully bend or unbend my wrists, why I can’t lift my head to look up at the stars.
From the time I finally started seeing a rheumatologist until just about a year ago, my RA treatment was pretty much the same, and–in my mind–it was about maintenance, also known as “under control.” Because so much permanent damage was already done and my inflammation markers were steadily normal, I didn’t understand the value of more aggressive treatment that felt unnecessarily risky. Still, it would come up every year or so–why not try this (it’s the gold standard!), why not give this a shot (literally)? And my answer was always, I’m not in pain (true), my numbers are good (also true), I’m not losing more mobility (not 100% true–I realize now there were incremental losses in those 30+ years), what would be the point?
Slow forward to September 2020 and my annual physical after a two-week vacation in the Finger Lakes (lesbian pun accepted). I’d been feeling some joint tenderness and stiffness, which was unusual, but I figured it was from swimming every day after five months of being super sedentary. It wasn’t. For the first time in over 20 years, my inflammation numbers were high, and not just a little high. They were active-disease high, elevated-cardiac-risk high, higher-risk-of-COVID-complications high. My arthritis was not under control.
My wife and I tried at first to chalk it up to post-vacation bloodwork timing. Two solid weeks of vacation-level alcohol and cheese consumption could make anyone’s numbers go up, right? But I knew that really couldn’t account for how high the numbers were, and it didn’t.
My new rheumatologist, who I started seeing as part of my round robin of re-establishing all my medical care locally instead of in New York City, examined my joints (squishy), re-did my baseline bloodwork (still high), and sent me for extensive radiographic imaging (i.e., all the x-rays), and confirmed that indeed my arthritis was active. And not mildly active. Not methotrexate gold-standard, first-line-of-defense active. No, this was head-directly-to-biologic-do-not-pass-go-do-not-collect-200-dollars active. But she also had some weirdly good news: not all the joints that were inflamed were eroded. That is, with more aggressive treatment, I might–might, no promises, but maybe–even gain back some mobility, especially in my ankles.
So, here I am. Seven months into my first TNF inhibitor treatment. Seven months into giving myself bi-weekly injections in my belly (and one totally botched injection in the thigh). Seven months into RA that, at least according to my bloodwork, is back to being controlled, maybe even well controlled. And the truth is, I do feel better. I think I actually was in mild pain pretty much all the time and didn’t realize it. My wrists and elbows haven’t magically unfurled, but they feel less sensitive. I’ve gained some flexibility in some of my fingers, and my ankles feel much more stable. All good things. I guess I should be happy, and I guess I am. Or at least happy-ish. Happy-adjacent anyway.
But the truth is also that the medication I’m on is an immunosuppressant, which puts me at higher risk for infections, which puts me in the category of people who are at potentially higher risk of contracting COVID and potentially higher risk for COVID complications (though RA is a risk factor there as well, so lose-lose). In other words, I’m seven months into being “immunocompromised” during a global fucking pandemic. And I’m three full Moderna vaccines down because they’re unsure how much of an immune response folks like me are mounting–and we’re the lucky immunocompromised. People being treated for cancer, for example, and people who’ve had organ transplants, they’re at much, much higher risk. And while I’m hopeful that an end–or at least, an endemic–is on the horizon, I also know we’re not there yet. And I’m still fucking terrified.
I don’t have a good ending to this. I’m not gonna go on a rant about how the pandemic isn’t over (it’s not) or how you should get vaccinated and wear a fucking mask to protect other people as well as yourself (you should). It’s just something I’m coming to terms with, and I needed to write about it. Sometimes, that’s how coming to terms happens. Sometimes, that’s what reckoning looks like.
Reckoning and rolling,
Jessica the Westchesbian
Jessica lives with her shiksa wife and geriatric cat in picturesque Tarrytown on the Hudson. Although a proud Westchesbian these days, Jessica grew up in Asheville, North Carolina, back when the opening of the Olive Garden and the 24-hour Walmart were big news. During business hours, Jessica’s a communications professional who translates highly technical concepts into clear, concise, colloquial language that media buyers and sellers can understand. Outside of business hours, she’s a poet, cat mom, wife, avid reader, and lover of questionable crime, sci-fi, and supernatural TV shows (preferably all in one), not necessarily in that order. Her poetry has appeared in Tin House, The Paris Review, LIT, and The Huffington Post, among others.