I sat down on the sidewalk and started to cry.
Scooping me up, my family took me to the doc, who smiled indulgently and said, “oh for goodness sakes, its only arthritis. My mother has arthritis and she takes her pills and doesn’t complain. So, just go home and take mega doses of aspirin and you’ll be fine.”
And so I did. Here I was, not even 50 years old, and I had arthritis. It appeared to be a simple fact. It was time to just suck it up and take care of it. Obediently, I took three aspirin every morning, and another at lunch, and two at night. I did that for about two weeks, until the bruises on my legs and the queasiness in my stomach gave me pause. I mean, what the hell? Was I supposed to trade in my stomach and my vanity for my joints? That didn’t seem right to me.
I went to another doctor. This time, on the advice of a physician friend, I went to a rheumatologist. I went to the best rheumatology practice in our area. Everybody said so. I was given an appointment three weeks away. I waited, waking every morning to painfully swollen knees and feet, heat radiating off my hips, pursing my lips, gritting my teeth and making myself move.
Finally, it was time for the appointment. The doctor gently manipulated each of my joints, clucking over the limited range of motion. She listened to my litany of aches and pains. She took my family history (carefully noting that my paternal grandmother had rheumatoid arthritis, a fact that had been told and retold to me for years). She ordered a few blood tests. She guessed that it was probably not just regular old arthritis, but my grandmother’s RA. She wrote me a prescription for a powerful NSAID, sent me to the office down the hall to be fitted with orthotics for my shoes; gave me exercises and stretches to do, and made an appointment for me to come back in 30 days.
I cried with relief. Finally, a serious and careful response to what had become a major crisis in my life. I really needed to be able to move my body. I had children at home. I had a full-time job that required my ability to move about the theater’s large campus. I had a garden. I was filled with hope.
Jump ahead about two months. The tests came back saying that, yes, RA was “indicated” – no RA factor, but lots of inflammation indicated by a nasty SED rate. The bruising had stopped when I stopped taking the aspirin. The nausea and stomach upset had continued, however, and although my pain was considerably less, it was still and all – present.
All of my research said that RA was not curable; that it was likely to be progressive (another one of those misnomers – I mean, there’s nothing progressive or positive about becoming increasingly crippled – seems they should say that it was like to be regressive). I read about people with hands so bent they couldn’t feed themselves. I read about people in wheelchairs. I read about terrible pain. Weight loss. Misery.
One of my mother’s closest friends, a world-famous poet, had suffered with RA since she was a young woman. I called her. Instead of receiving the loving tenderness I expected, she delivered a swift and stern lecture. “This is big time, Kathie. Take your medicine. Do your exercises. Don’t complain. Don’t become ‘an arthritic’ – it cannot be allowed to define you. Simply do what you have to do and learn some stoicism. It is what it is. Accept it, and go on.”
By this time, I was walking with a cane, dealing with pitying stares and people suddenly speaking louder (as if I was deaf for god’s sakes!). We lived in a house with an upstairs, and I would holler up instead of walking up (feeling like a shrew). I wasn’t going to have it. I figured that if western medicine couldn’t cure it, maybe some other medicine from some other culture could cure it. Arthritis is, after all, one of the oldest diseases known – the earliest homo sapiens had it. So somewhere along the way, somebody had to have figured out how to cure the damned illness!
I decided to go on a hunt. Calling upon every resource I could find, I set up a series of appointments. I visited with a naturopath, a shaman, a chiropractor, an acupuncturist (an old man in a small office upstairs above a restaurant in San Francisco’s Chinatown), an Alexander Technique teacher, an osteopath, a neurologist, a yoga instructor, a masseuse. They all said that they could help me, offering up various things to ease my symptoms, but agreeing with the basic premise that arthritis was not curable, was progressive, and all I could do was slow it down and make it a bit easier.
A friend made me a beautiful hand-rubbed and molded cane out of a pear-tree branch. My good hearted husband filled in for me when I couldn’t move about. Everybody was quite indulgent.
Me? I was miserable. I hated being in pain. I hated being hemmed in by my own body. I was not being a good sport at all.
Still nauseated, I stopped taking the NSAID’s, except when I was in real trouble. Instead, I concocted my own therapies, taking a bit from each of the experts I’d consulted. I had regular massages, I worked with an Alexander teacher to help me learn how best to align my head with my neck with my spine, and most importantly, how to respond to pain by relaxing my muscles instead of clenching them. I did some yoga stretching every morning, I forced myself to walk every day. The rheumatologist had taught me some hand exercises and I did them religiously (I still do -- I spend a lot of time at the computer, sew, paint, and play the piano and I am terrified of losing my hands). In spite of advice to the contrary, I found that hot baths helped to ease pain. I took fish oil capsules twice a day. I tried not to be grumpy. My rheumatologist was tolerant of my fumbling about; my regular physician was haughty and dismissive. My family continued to be supportive.
Life went on.
I don’t know if it was the therapies or the smiles of my children or simple dumb luck that made for a remission, but I finally got one. Eventually, I returned the cane to the creator, allowing her to hand it on to someone else in need. I continued with the morning stretches to deal with the stiffness that came with the break of each day. I continued with the daily walking, the hot baths in the evenings, occasional doses of Ibuprofen when I really needed it. But I was, truly, better.
Jump ahead a few years, and I again began to have what I called hot hips and hotter knees. Pain was pretty limited to the waist down – my hips, my knees, my feet. The rheumatologist I had seen in the early days was no longer in practice locally. I went to another rheumatologist for advice. When I got to his office, they escorted me down the hall to an x-ray lab, x-rayed not my feet or my knees or my hips, but my hands. I then sat and waited. Forty-five minutes later, he burst into the room, flapped his hands at me and said, “you don’t have rheumatoid arthritis; I don’t know what you’re up to, but you should not be here.” Stunned, I tried to talk, “Wait! What?! Wait!….” But he was already gone.
Then my cousin, a physician, told me that he didn’t think that our grandmother (long since dead) ever had RA. He thought she had some other auto-immune illness.
I went back to Square One. I began to do the exercises in earnest again. I had another round with a masseuse. I swallowed more Ibuprofen than I probably should have. I forced myself to walk harder and longer. Sometimes I wore a brace to give my back some support. I simply did not know what else to do.
And so that is where I still am – 24 years after that first episode of whatever you call it, whatever it is. My hands are still pretty much okay, although the little finger on my right hand is bent, and several other fingers are beginning to knob up. My hips are sometimes hot and painful; likewise my knees and my feet, but mostly, I’m okay as long as I walk every day, and pay attention to fatigue and to the lessons from the Alexander teacher. Most people who know me, haven’t a clue. If they see me mindlessly massaging my sore knees, or stretching out my back after a long sit, I simply explain it away as “old-timers stuff.” I don’t talk about arthritis with my family any more. I don’t complain. I’m a stoic. I’ve accepted my little carcass with all its aches and pains and coping abilities, and thank my lucky stars that whatever it is that I have is mild enough that I can be stoic.
I don’t know if I really ever did have RA. I didn’t ever have that explicit factor in my blood – but blood work still shows inflammation (my SED rates are sometimes pretty alarming), and those old hot hips and sore feet and knees still sometimes whisper nastily “psst, nah-nah-nah-nah-nah-nah, you’ve got arthritis!” The GP I switched to years back put me on statins for a while, thinking that they’d help to reduce inflammation, but then the statins made me exhausted, so we’ve stopped that. We are still trying to figure things out. But mostly, I think that I’ve been lucky lucky lucky.
My advice to anybody dealing with this is a softer version of what the arthritic friend told me lo these many years ago: Take your medicine. Figure out which exercise eases your pain (swimming? Walking? Yoga?), and then do it every day!. Don’t mess around, take this seriously. Demand that others give you support. Make yourself move (the more you move, the less you hurt). And when you hurt too much, rest! But also, don’t let it define who you are. You are not “an arthritic.” You are not hobbled. You’ve just got some shit to deal with.
Be brave. Take care of yourself. Carry on.