Over the course of about six weeks when I was 23, I lost the physical capacity to drive my car, ride my bike, get up and down stairs, or get out of bed on my own. I couldn’t make my body work right, and I was on a new and unfathomable level of pain. Buttons were out of the question—couldn’t grip with my fingers, let alone close either hand. Socks required assistance—couldn’t reach my feet because every joint between my fingers and my toes was inflamed. Brushing my hair, holding a fork, and turning a doorknob (assuming I could get a grip on the object in question) all brought tears. It hurt to inhale too deeply. I had high fevers, every night, sufficient for ruining a futon. Walking for a few blocks was an exhausting accomplishment. Resting out in the sun—try to relax and get better!-- turned me blotchy purple and soon thereafter I would start to feel worse. Work? I could focus enough to sit, maybe get a few things done, barely the basics, before I would wear out.
Doctor visits and tests, and more doctor visits. Three inches of medical bills. Not curable. Manageable, maybe, with certain compromises, like not having children. Drugs came with rather alarming warning labels, caused my hair to start falling out, and added “unmitigated nausea” to the list. Mortality tables peaked at 10 and 15 years.
I’ve made it 15 years. A few visits back, my acupuncturist told me I was the healthiest he'd seen me. This is big news in my world.
There are new drugs, biologics, that are focused on a specific disease factor—TNF, or Tumor Necrosis Factor—and easier (inasmuch as science can tell, so far) on the body. You’ve probably seen the ads—carefully framed close shots of hands turning keys in door locks, or pulling on socks, or holding thin watercolor brushes or porcelain cups by their tiny handles. The voiceover says, “I want to get up when I want to get up. I want to button my own shirts.” There are people dressed for early morning physical activities, and they are smiling and keeping up with their friends. It is what my people want.
I have been taking these biologic drugs since just after they came out. I’ve had a form of Rheumatoid Arthritis (RA) for 15 years. You have my deepest sympathies If your knees are bad, or if your grandmother’s knees are bad, because of arthritis. However, you probably mean osteoarthritis, which is “wear and tear” on joints. RA is not that, but an immune disorder, and I leave it to your powers of Google to sort out and appreciate the difference. Don't spend too much time looking at the pictures of either.
My particular flavor of RA is a bit of a cross between RA and Lupus. It’s a chronic, incurable degenerative disease. It’s systemic, so while it does primarily chew away at my joints, it can also wreak havoc with some of my favorite internal organs (lungs, heart), my vascular and nervous systems, and my skin. When it flares up I can feel like I am sick with the flu, complete with sore throat, fever, and brain fog. I wake up with some degree of stiffness and pain most mornings.
Early predictions of severe disability and premature demise have gone unmet, which is, in a word, luxurious. Treatment protocols and options, and advice, continue to evolve, and I am no longer new to the parallel world inhabited by the chronically ill. So I am no longer in shock about it. I can often “pass” as a healthy person. I’ve learned to cover, and work around my RA. Not only have I trained my wrists to bend backwards again, but I can also move the bones in my hands back to where they belong when they slip out of place. I know to unscrew the lid of my coffee mug the night before. I have sort of learned how to pace myself, even though that’s contrary to how I am wired. My interpretation of body signals some would lump in with ‘pain’ has gotten more . . . nuanced. My ability to worry has gotten more specific. I have turned sun avoidance into an art form. I am very attached to my rheumatologist and my acupuncturist, who are both patient, kind souls. I can finally spell "rheumatologist" without having to look it up.
I have had periods of good health, and done things I wasn’t supposed to be able to do, like run for (most of) 4 miles, and more than once, and play what counts as team sports in fair Portlandia. I am back to biking for fun and transportation. I’ve been to Paris, and Hawaii, and Canada, and Mexico, and camping, and roller skating. A friend dubbed me “Queen of the Extracurricular Activities.” I design and sew clothes and costumes. I’ve done four cartwheels. I can have booze again, and prefer either bourbon or whisky with a touch of cold water, sometimes with ice. I volunteer for good causes. I’ve gotten a damn law degree, and my last employee review used the term “unsurpassed” to describe my work.
So this is all far from tragic. Fifteen years ago, perhaps it was, or could have been; it’s been a long time, there’s been a lot going on, I’m doing my best to avoid it. If you’re around long enough something’s bound to get you, and immediately and with great force jack you into mourning and redefining your sense of self whether you’re ready or not. One adjusts to a new reality, and adapts, because there’s not another choice. This is, at least some of the time, just my thing, or one of them. I have gained my gimpy footing.
Not that it’s been easy. I am not good at asking for help. I am unable to explain, when I am in pain or exhausted, that I have a very thin, oily layer of focus available to other people, and it is blotchy and full of holes. I don’t like when my doctor tells me I can’t do something anymore because it’s too risky for the likes of me. (I consider his list negotiable.) There have been times I’ve had to work less because of my RA, and a particularly dark period where leaving work and school entirely and applying for disability was a hot topic in my household. Projects I have to put down because of a flare sometimes get hurled into the trash. My blood boils when someone who doesn’t know me, my background, or my history tries to tell me about some quick cure or that my treatment choices are wrong. I could do without a certain co-worker being openly judgmental of the fact I don’t go into the office until 9am, sometimes later. It breaks my heart that if I can’t keep up walking with a group, more often than not they leave me behind without noticing. I lapse into explaining my morning slowness with a “well, I’ve never really been a morning person.” And then I remember how I would bike into work at 6:30am, no problem. Or at least I think that was me. It’s been awhile.
There was a day a few weeks back when I got out of bed, got ready, and went to work. I was the first one there for the carpool. I was ready to go get my job on. I may have been perky. It was simple and wonderful and strange.
Back in January, my wonderful wonder drugs stopped working. It hit me hard, way harder than my usual fluxuation of symptoms. If I was awake, I was in neck-to-toes pain. I could only sleep for as long as the narcotics were in full swing, and only for that long. There was a dentist drilling in my right hip, without novocain. Pushing an elevator button drove a spike of sharp pain all the way up my finger through my shoulder.
For example.
I think it’s impossible to accurately convey the sensations of a flare. I’ve tried, but I think it’s too much like trying to explain what having a snowball ground into your face feels like. You’d not appreciate the effects unless you directly experienced the full, if you will, impact. So you either get it, because you’re going through it, or you don’t, but it’s clearly in the “bad scary painful things” category.
The biggest monster a bad flare can bring out is fear: fear that the flare will do something irrevocable to something important, like an artery in my brain, that this flare can’t be stopped, that it that this is the proverbial “it” and I can kiss my happy little lifestyle goodbye, immediately and permanently. The longer one goes on the more I calculate what needs to happen if I can’t work (rent, medical care, pets), and how long I’m going to be able to stand it before I pitch myself off a bridge. I get fogged in. I can stop understanding why anyone would waste their time with me. I stop talking. I don’t answer the phone, or messages. I don’t have anything good to say and anyway it hurts to hold the phone and doing so will make my hand go numb. Forget non-critical typing. I go to bed and hope the monster gets back under it.
January's bad flare had me cornered: I’d been up the scale of treatment through 2 TNF inhibitors, and nothing else really worked that great for me, including methotrexate. Drug therapies I haven't tried include methotrexate as an adjunct, so those . . . weren’t really sounding like options. The rheumatologist looked Concerned, which is never a good sign. I switched back to the first TNF inhibitor I’d been on, as it was possible my arthritis no longer had a work-around for it. So back to the Enbrel, and waiting 4-6 weeks to see if it would work. Prednisone and more frequent acupuncture visits ruled the calendar. Time moved slowly, with patches of it simply disappearing. I stopped feeling so horrible. I went on a light hike. I got better. Then I went on a 39 mile bike ride. The boyfriend and I planted a garden. So I’m back, and front, and a little more twisted.
When I first got sick 15 years ago, I became obsessed with small airplanes, and learning how to fly one, if only because every drug I took came with the notice that I wouldn't be able to get a pilot's license so long as I was on it. I went to law school despite, or because, it was going to be particularly hard. I still have all the bi-plane memorabilia my dad, being my dad, gave me while I was completing that degree. (The airplane thing has evolved into metaphor, and I'm fine with that.) What sounds difficult and particularly terrifying now? Going on a day long bike ride and getting stuck somewhere because of my RA, or wearing out, or being too slow, and getting left behind. So me and my 15 years of RA are going to go on a little bike ride in September: 4 days down the Oregon coast, 210 miles. It's a fundraiser for the Arthritis Foundation, which supports education, health programs, and research on the more than 100 types of arthritis, including the type I have. You'll likely hear more about that from me later.
And, for what it's worth, I intend to be an entertaining busybody of an old woman, well into my 90’s.
