But back in the mid- to late 80s when I was first diagnosed – and when the pain the disease caused in joints all over my body got worse and worse as time passed – it was new and I was simply bewildered and overwhelmed by it. I knew RA probably couldn’t kill me, but its varying pain and disability levels, which could come and go with lightning speed and without any sort of predictability, made me feel as if I always had a monster waiting for me, drooling, around each corner.
And in a way, I did.
I’ve referred in past posts to my RA as a dragon. That feels right to me, since I’m one of those people blessed (cursed?) with an overactive imagination. My rheuma-dragon has long, blunt-ended fangs and claws that he sinks into my joints, and once they’re in good, he chews. Sometimes he just nibbles a little. He’s not real hungry, just bored. Other times he’s ravenous and I’m sure he wants to separate my bones from each other so he can gnaw them at will. He can’t do that, though. I’m too strong for him. While he chews I’m beating him over the head with my fists and any other weapon I can find. Sulfasalazine? Why not? My healthy diet? You bet. That one’s like an oak club.
Those are today’s weapons. But back in the mid-80s, my weapons were smaller and less effective. NSAIDs, mostly. Narcotic pain meds. Hot baths. Even back then, the rheuma-dragon would eventually get tired of being pummeled and slink off to his cave. The pain of his long teeth went with him. I could move again. I’d be tired and disheartened, but deeply relieved. And so it went.
I’m in a fanciful mood today, so I hope you’ll forgive me if I continue along in dragon-mode.
When I returned to the U.S.A. in January of 1993, I brought the rheuma-dragon with me. (This was not a choice, believe me.) An odd thing happened, though. While he continued to bite and chew on my joints – mainly my hips, knees, ankles and feet – he seemed a little weaker after a while. I’d left all my little weapons behind in Germany. Now all I had were hot baths, healthy food when I thought about it, daily walks when I could, and Aleve. I kept fighting. And somehow, as the years passed, I beat that stupid dragon into submission. I did it alone, as I had no faith in medicine anymore to do it for me. The pain stopped.
Now, I knew, deep in my soul, that I hadn’t conquered that sneaky dragon. He was still out there, somewhere, curled up in his cave, licking his wounds, and planning revenge. And getting very, very hungry. I was wary. I carried my Aleve with me everywhere. I put my cane away, but I remembered where I put it. I kept my Ace bandages and soft splints tucked away, ready just in case. But the rheuma-dragon only came out for an occasional nip, as if playing with me. He just wanted to let me know he was still around. That I shouldn’t get too cocky.
From 1999 until 2005 my dragon mostly slept. He woke up once in 2003, really ravenous, and latched hard onto my left shoulder. I was working at the time next door to a chiropractor, so I went to him and asked if he might have any ideas about getting rid of my pain. He did. He used very gentle manipulation and ultrasound on my shoulder – and he helped me knock that dragon right on its arse. I was delighted! It was expensive, but I had a new weapon!
The dragon belly-crawled back to his cave, muttering black, ichorous words beneath his breath.
And I went back to my life without him. I have to admit I got used to it again, not having that pain or the threat of pain always a part of my daily life. I did a lot of things I’d never have been able to do with the dragon attacking me — miles and miles-long backpacks in the wilderness; days when I hiked the back country pursuing wildfires for photos and stories; whitewater rafting trips. I worked in my garden. I hefted heavy sacks of potting soil and fertilizer. I dug holes with a shovel and pulled a half-ton of vinca major out of the dry earth with my hands. My hands.
In 2005 the dragon returned, but he’d figured out a way to cripple me without causing me pain. A big lump of synovial pannus formed over my right ulnar wrist. I had no idea what it was, and neither did my primary care doc, who I’d met twice in five years. She sent me to an orthopedic surgeon, and he identified it, based on my past history of RA. Shortly after that, he removed the pannus surgically.
Sneaky rheuma-dragon, chewing on me with gumless jaws. While he hadn’t managed to do me a great deal of harm, that pannus could have hardened and interfered with my ability to move my wrist and fingers. He’d reminded me, though, in an undeniable way, that he was still around, still up to mischief. I hadn’t conquered him. Not at all.
He waited until mid-2008 to come back on a regular basis. But he wasn’t the German rheuma-dragon I’d grown accustomed to. Now he was my American rheuma-dragon, content to tease and terrorize me with flares that were much smaller than they’d been before, but more fatiguing. Now he just concentrated on my hands, making them ache vaguely. Once in a great while he’d bite down hard, just to get my attention, and then ease up again. He was diminished by his trip overseas with me, and by his new environment, but now he’d built up endurance.
That’s the rheuma-dragon I’m fighting today. I have a lot of new weapons in the form of modern drugs, increased exercise and healthy food. I have a huge weapon in the form of the Internet, with information about this disease always at my fingertips and with friends online who also fight their own RA dragons, always ready to offer moral support and suggestions. I no longer feel overwhelmed by my dragon, and I’m certainly no longer bewildered. We’re both older. And I, at least, am stronger.
Take a moment, if you will, to visit Cathy, Beth, and Robin. They’re fighting tough dragons right now and can use some help. They need those of us who know the fight, the pain, and the desolation intimately, and who can help them struggle through to another victory.