Hi. I’m Katherine and I’m an arthritic. I’ve had Rheumatoid Arthritis (“RA”) since I was 13 months old. I’m told that one morning I stopped wiggling around in my crib the way I used to. My parents rushed me to the hospital, where I was mistakenly diagnosed with leukemia and a string of other life-threatening illnesses. When the doctors finally settled on JRA, they put me on high doses of liquid aspirin, which, it turns out, I’m allergic to. Seriously allergic to—I got hives, a fever, a rash and had difficulty breathing.
Being allergic to aspirin is seriously inconvenient. But of course I don’t remember my diagnosis, or my reaction to aspirin. That’s all been retold to me second hand by my tough-as-nails-take-no-bs mother, who, once I turned six, was herself diagnosed with RA. When I realized that she had the same thing as I did, I trembled. And she knew what was coming, which probably made it worse.
I don’t remember my diagnosis, and I don’t remember life without RA. Instead, I remember the taste of Tolectin ground into my applesauce. I can still feel the casts I slept in when I was three, the ones that kept my legs straight at night to stop them from warping into bent messes. The casts latched onto my little legs with itchy Velcro straps; they were tight and made me sweat from thigh to ankle.
I’ve been on so many medications over the years that I can no longer rattle off the complete list. I’ve tried and failed something like 30 different drugs.
I know that I’ve had iritis for about as long as I’ve had RA, but again, who knows when I became conscious of this additional disease. I also don’t remember life without eye problems or eye doctor appointments. I can close my eyes and imagine myself as a four-year-old, holding my mother’s hand while I stared down at the grey concrete sidewalk, floater cells moving across my field of vision. Fun fact: I developed glaucoma in my 20s, not spontaneously, but as a side effect of the steroid drops I was taking to control my iritis.
So now, in my 34th year, I visit a rheumatologist (for the obvious), an ophthalmologist (for the iritis and the glaucoma), a neurologist (that numbness and tingling that’s totally consistent with RA could be something else, like MS, you never know), and an ENT, on a regular basis. The ENT takes care of all the weird infections and colds my suppressed immune system invites in on a regular basis. I try not to be a germaphobe, but if I hear your phlegmy cough headed in my direction, I will keep a comfortable amount of personal space between us. Or I will hobble away, at a slow to moderate speed.
What’s most impressive about my RA story? I’ve been on prednisone for twenty-three years! WHAT? So yeah, I’ve been starving and moody and twitchy and not getting enough sleep for about 23 years. I’m going to taper down to 3 milligrams at some point this winter, when I’m off work, when I can react to any unexpected flare with some serious couch time. Zero milligrams is probably never gonna happen. I can’t get off the damn stuff. There were a few years where the pred stopped working and I had to have 40 ccs drained out of both knees during the same appointment (a few weeks before I took the New York bar exam) and switch from pred to its cousin, methylprednisone. Those were some dark days, man. I did pass the bar though.
Enough of that depressing stuff. The thing is, if you met me and didn’t know any of this, if you didn’t know that I’m focusing a lot of my energy on correcting my limp and wondering if Express Scripts will get its act together, all you’d see is a legit overachiever. I mean, I’m a law professor! I love teaching and I adore my wonderful students. Before I was a law prof I was a lawyer, and I was decent at that too. Before that, I was good at school, I was good at sports, I was good at languages (I speak decent Italian and more-than-decent Spanish), I was good at having boyfriends . . . blah blah blah. I am so good at pretending to be perfect that people have told me they envy my life. Which I find hilarious.
This veneer of perfection has its downside. When I tell people I’m sick they assume it’s something I’ll get over, like a cold, or a shin splint. I have to get very specific before they understand. My go-to “this shit is real” examples include the following information:
“Yeah, I get this infusion of a chemotherapeutic agent . . .”
“After my last glaucoma surgery, which didn’t go as planned, I was legally blind in my left eye for six months.”
And even then I look so goddamn hearty (rosy-cheeked, smiley, blonde) that most people never grasp that I’m really, really close to tooling around in a wheelchair. That I am preparing for that moment. That I live in fear of that day and that as healthy as my routine is (Vegetables! Limited alcohol consumption! Exercise four times a week! Stretching! Constant stretching!) I’m also in a great deal of denial. About how much harder it is, with each passing year, to stand for longer than a few minutes. Of how weird my right knee feels. About how I can’t recall the last day I felt good. I don’t remember. I just hurt. All the time.
So despite outward appearances, I am constantly raging a multi-theater war: against my mail order pharmacy, against the various levels of incompetency at different medical offices, against the newest manifestation of this never-ceases-to-surprise-me disease, and against the unknown—how disabled will I be after another 33 years of this? Will I survive that long?
But after 33 years of pretending like it’s no big deal, and that I can handle it all without breaking a sweat, I’m coming clean. I’m swallowing my pride. And my prednisone. And, you know, like 12 other pills, every day. Fair warning: this blog isn’t going to be pretty. There’s nothing lovely about this disease. It’s painful and exhausting. There’s a very specific solitude that comes with living with chronic pain. But despite it all, my life is often so ridiculous that I can’t help but laugh. So sit back, pour some ice onto that swollen knee of yours, and enjoy the ride. We’re in it together.