I always say I got RA in 1956, when I was twenty-three, but reading some of the other stories on RA blogs of "early warning signs" years before full-fledged RA, I am more than ever convinced that the times when I had to cancel my piano lessons due to sore wrists were omens. At nineteen, I left the music conservatory at Millikin University to marry my Air Force sweetheart. The only strenuous parts of that happy, fulfilled marriage and life were doing the laundry- khaki uniforms, bedding and all our clothing- in a bathtub, and playing the piano for ten hours a week for a dance school. I don't remember my hands or wrists complaining, only my back.
I had a healthy baby girl at age twenty-one, and another planned pregnancy a year later. During the three months that it lasted, I had painful ear infections, and near-bronchial pneumonia-that second infection during a long car-trip to move from our Air Force home in Mississippi to New York State. I hadn't even found an OB yet when I began to miscarry, so, in a panic I chose someone from the Yellow Pages, who falsely advertised himself as a specialist. He was not! He "liked to deliver babies," and was totally inept, as I later learned. With his full approval, I got pregnant again two months later, and began to have problems almost immediately. The least of my problems was the rapid weight gain, for which I was given amphetamines-"speed." I kept saying "How can I be getting kicked in the groin and in the belly-button when I'm only four-and-a-half months along? It's gotta' be twins!" There were no ultrasounds, sonograms, nor amniotic fluid tests in the mid-fifties. I was right; he was wrong; and at seven months I delivered twin boys who survived just four and eight days. I needn't tell any of you where the stress level was at that point. Plus, although by then I did have a wringer washer, it hadn't yet occurred to me that Upstate New Yorkers didn't hang their clothes outside in the middle of winter.
Normally thin, I had some "baby fat" to work off, so I took a class in volleyball. I came home from the first night's class with red, swollen, stinging wrists. My husband and I agreed I must have really hit the balls with a vengeance! But the symptoms didn't go away. By the time I finally got my second beautiful healthy daughter, two years later, I couldn't lift or diaper her at night. Her father had to carry her to me to be nursed. Days weren't quite as bad, but as she grew she had to learn to hold on to me as I lifted her on my forearms instead of hands. Those were the days of cloth diapers and big diaper pins that were torture for me. She was potty-trained for daytime at seventeen months, but not for nighttime for much longer. I remember sitting on the bathroom floor crying because I couldn't fasten the pin, and then proclaiming "If you're going to keep needing a diaper, you're going to have to do it yourself!" We have a photo of her at three doing just that!
Somewhere during those years, my PCP (an internist) started me on gold salts, and for fifteen years, on and off (off for nine months to have another healthy baby boy), that and aspirin, then Darvon Compound by the handfuls, were all that was available to me. My stress level rose and fell as my husband began to tire of "taking care of a sick wife," and finally left me and our children. I was lucky to find a loving, caring man to enrich my life, and during his remaining six years before his sudden death from undetected metastatic pancreatic cancer, I went into remission. I was even able to go off the gold salts, dance, play the piano again, and shovel the driveway! People who knew me only during those years were hardly aware of the RA, unless they noticed my bony forearms, puffy knees and fused wrists-it was seldom necessary to mention it unless a contra-dance partner was grabbing me too hard. Two years later, the remission ended dramatically, and the terrible pain returned along with a sunburn on my wrists, the only exposed part of me as I sat and luxuriated in the sun's warmth on a cold, damp, day on my beloved Star Island retreat in the Isles of Shoals in 1981.