Living in Rheumaland

Rheumatoid arthritis pain is sneaky. Like a slouching cat creeping up on a mouse, it pounces without warning and sinks its fangs deep into its hapless, unsuspecting prey.

RA preying on the unsuspecting prey: me

That’s me, by the way. Prey. And that creeping and pouncing just happened to me. I mean, it wasn’t a cat that did the pouncing, but my RA sure did. One second I was picking up a dish to put in the dishwasher, and the next my RA was shoving a thick breadknife between the bones of my hand and flexing it. Yes, I dropped the plate. No, it didn’t break. It was light and made of recycled plastic. I know better than to use heavy ceramic plates here in Rheumaland.

Earlier today I was unloading the dryer. I enjoy this chore because the clothes are always so soft and warm as they come out of the machine. At the time, my hands were feeling OK, but as I pulled a bath towel out of the dryer’s maw, it suddenly felt like all the small bones in my fingers shifted a quarter-inch sideways inside my skin.

It hurt like you-know-what. “Ow!” I yelped. “!&#!@*”

“Are you all right, honey?” my elderly mother called from the living room.

“Yeah. Just my rheuma.” Under my breath I cussed my fingers, the towel, the dryer, the disease, my screwed-up immune system and the handfuls of drugs I take each day that clearly aren’t doing the job. But why should they? This is Rheumaland.

Striking when you least expect it

This afternoon I was writing. I was just breezing along, enjoying how the words were flying out of my mind and onto the screen like swifts darting overhead on a clear blue day. Yes, my hands hurt a bit while I typed, but I can’t just stop doing everything because I have this stupid disease. I especially don’t want to stop when the pain is relatively mild and bearable, like it was most of the time today. (That doesn’t mean I was ignoring it. I don’t want you to misunderstand. You can never totally ignore rheumatoid arthritis pain.)

Suddenly (here it comes), as I stretched my right index finger upward and leftward that tiny distance to tap the letter “y,” my RA sent a vicious jab of eye-popping agony from my fingertip to my knuckles and back. I flinched, yelped, stopped typing, and sucked my assaulted knuckles, moaning into them as I waited for the pain to dissipate so they and my traumatized digit could calm back down.

This is Rheumaland, where the air smells like menthol and Tiger Balm, wrist splints live tucked in amongst the underwear, and pill bottles overflow the medicine cabinet. This is where I keep Ace bandages rolled up beneath my pillow and my blue handicapped placard tucked into the front pocket of my purse. This is where I live, the place where I can never, even for an instant, forget that I have this … disease.

RA’s sneaky pain always catches me by surprise.

You’d think after all these years it couldn’t ambush me like that anymore. You’d think that I’d always be prepared, mentally and physically, steely-eyed and armored-up. Well, no. Because here’s the thing. When my joints don’t hurt, or when the pain is mild enough to relegate to the back of my consciousness, I slip with heedless ease into normality. I just live and do, moving my body the way it’s supposed to move. When I feel like that, especially, I enjoy moving. Who wants to remember the threat of painful joints?

My RA is moving in slow motion. It’s not as ferocious as it was in the early days, nearly 28 years ago. I’m relearning old lessons, though, as it slowly gets worse and worse, and I  find myself being a little … tentative … about doing things I’d normally do without thought. Because my RA is sneaky. It likes to ambush me. And I resent being forced to slow down and think “how will this hurt me?” before I get on with things, with living my life.

And then I remember how blue the sky was early this morning. I remember how pretty the Inca lilies I picked up at the store the other day looked in the vase on the kitchen table. I thought about the joy I felt when the hummingbird visited the sugar-water feeder we put out for her, and how good the salmon filets I grilled last night tasted. There’s more to my life—more that’s good, more that’s beautiful—than RA, even when it’s at its most frustrating, even here in Rheumaland.