Rheumatoid disease (arthritis) nearly overwhelmed me in the early years following my diagnosis. I had never experienced anything like it before. The pain in my joints, whether mild or excruciating, colored everything I did.
It hit my hands, wrists, and shoulders. It settled into my hips, my knees, my ankles, and my feet. That pain was with me when I rode the bus around town. It made me limp through shops and, in my job as a journalist, made it hurt to take notes during interviews. It kept me from going on long bike rides with friends, from having fun with my 7-year-old daughter and my husband, and it frequently kept me home from work. Sometimes, when it attacked my jaw, it even kept me from eating.
Over the course of about a year, RD had crept into every aspect of my life, a permanent unwanted guest.
Now, I have a vivid imagination, and I've always been a visual thinker and learner. So really, it’s no wonder that my rheumatoid disease slowly gained a persona, a face, and a form in my mind?
I recall, clearly, the day it happened. I was in the living room of our little third-floor flat, alone on a weekday afternoon. I’d had to call in to work sick that day because my left foot was flaring. The pain was so constant and so intense that I couldn’t bear to put my weight down on it; the mere thought of waiting for and riding the bus to work, then spending the entire day trying to pretend I was fine--when in fact I was in horrible pain--made me shrink with dread.
So there I sat there on the sofa, my foot propped up on a pillow. Because I was home, with no responsibilities, I’d taken one of the strong narcotic painkillers my doctor had prescribed for times like this. The drug was floating me gently a few feet above the terrible, throbbing pain in my foot. I’d been trying to read, but my soft, buzzy mind couldn’t follow the story anymore. Instead, I decided to see if I could think up a way to describe the pain that had hobbled me so effectively that day.
Hmm, I thought. OK, it feels like someone has shoved a thick, dull butter knife between the bones in my foot, and now they’re flexing it up and down, up and down, rhythmically with my heartbeat.
Not bad, I thought. That describes it, but it’s still not vivid enough. How about … it’s like a hardened, misshapen heart beating slowly and inexorably inside my foot. Each relentless throb make the hot, alien muscle swell up and shove rudely against the delicate bones and joints at the base of my toes.
Yes! Now we’re talkin’! I thought happily. But while the image is graphic and fairly descriptive, it still doesn’t capture (I winced as a sharp set of pain-teeth punched through my foot and … what?) Wow. Teeth? What teeth? Whose teeth?
Why, the dragon’s teeth, my dear, my mind told me calmly. It’s yours. Your own, personal, just-for-you-for-life rheumatoid arthritis dragon. Your rheuma-dragon.
My imagination took off. My rheuma-dragon had long, narrow, yellowed fangs with blunted tips. He was invisible to others, but he was a young drake, vital and huge. The beast lived inside me. His thick scales were the dull red of dried blood. He had cat-like, glittery, sick-green eyes and sharp, grippy claws. He could coil his long, prehensile tail around and around me as he bit deep into my joints, wrapped me in his bat-like wings, and chewed.
From that day on I’ve thought of my rheumatoid disease as the rheuma-dragon. Somehow, naming my enemy made it easier for me to accept and fight him for the next 10 years. When I went into remission for six years, I imagined him curled up deep inside me, sleeping and dreaming malevolent dreams. When the remission ended (as I knew it would, eventually), the initial flares were short and mild, so I thought of my dragon as drowsy and slow, only half-heartedly gnawing at me here and there while his appetite returned. When the flares grew more intense and started lasting longer, I knew he was really waking up and getting hungry.
In time, I realized that my rheuma-dragon had changed during the long remission. He’d aged. The years he’d spent in his cave had mellowed him a little in spite of himself. His bite wasn’t as deep, sudden, and ferocious as it had once been. Oh, he was still out to get me, never fear, but it seemed he couldn't bite as hard as he once had. Now he was sneakier.
Older myself now, and wiser, I started looking in earnest for weapons to use against him. While he’d slept the Internet had arrived, so arming myself with all the credible knowledge I could find was easy. I studied up on tools I could use to defend myself, things like improving my diet, exercise, and sleep habits. I learned about the new drugs available, and partnered up with my rheumatologist, a modern-day Merlin. Finally, I went public in my crusade against my rheuma-dragon, writing a blog and becoming a patient advocate. Helping others to cope with their dragons made it easier for me to cope with mine. I found companions, fellow-warriors, and friends, all of them encouraging me as I raised my sword.
The rheuma-dragon and I have been skirmishing for almost 28 years now. I'd like to think that one day I’ll actually conquer him.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?