Once the weeks of morning sickness subside, I feel as if I’ve grown wings.
Even with the fatigue, it’s as though someone has pressed a great “reset” button on years of inflammation. That elbow joint that hasn’t straightened fully for years suddenly rediscovers its full range of motion. My knees, too, become straighter and stronger than they’ve been in many years.
Even without the meds, ditched in honor of my growing baby’s health, it is my best and most dramatic remission since my teen years–the last time my hormones went to town.
I was diagnosed with juvenile rheumatoid arthritis (RA) at age two. My mother had to fight to have her concerns about my sore and swollen knees taken seriously. Because the family doctor always saw me at my best point in the day, early afternoon, he insisted that my mother was overreacting to my “growing pains.”
In desperation, Mom finally won a proper diagnosis by carrying me all morning so that I wouldn’t limber up before the checkup.
Puberty brought a blessed decade of remission; then the RA returned with a vengeance in my early twenties. The first flare-up of my adult years was so bad that I spent weeks of one university term bedridden, and I could barely walk from class to class in my graduating year.
As a child I relied on aspirin for relief; my puffy face in some school photos records the years I also needed cortisone. In my twenties, I cycled through a pharmacopeia of options until a combination of aspirin and nonsteroidal and sulfa drugs finally stabilized my cranky joints.
Now, at thirty-two, after four miscarriages, I am overjoyed to have finally made it past the first trimester, and I’m enjoying my pregnancy-induced remission–a reprieve unlike any that I’ve managed to buy during all of my years on the medication-go-round.
The remission is a delight, but not a surprise; my reading has alerted me to the possibility.
It has also warned me to anticipate a rebound flare after I give birth.
After my daughter’s birth, the RA takes a few weeks to return. It has had the good grace, at least, to wait until I am over the worst of the incision from the emergency c-section. But now here it is, creeping back like a bad roommate who doesn’t want to believe that you were serious about that eviction notice. A slight swelling. A dull ache. A painful stiffness on rising. Right knee. Left knee. Right elbow.
Hard to say what’s worse–the pain or the litany of fears that plague my thoughts. What happens if I’m bedridden again? How can I mother a baby I can’t pick up and hold? How can I care for a toddler if I can’t walk and run?
My daughter is four months old the day I realize that I cannot lift myself out of the rocking chair while holding her. My knees are too painful and swollen to propel my weight upward without any help from my arms. Jill’s weight, however small, traps me in my seat. Her father has gone to work, and there is no one else I can call on to take her from me.
Swallowing the panic, I lean forward and lay her carefully across the footstool, praying that she will not wiggle and roll off. Then, gripping the arms of the rocker with both hands, I painfully propel myself out of the seat. Bending stiffly at the waist to guard my swollen knees, I lean forward and scoop her up, resting as much of her weight as possible on my left elbow. The right one is almost as inflamed as my knees.
My mind whirls as I sit in the exam room waiting for my rheumatologist. I am desperate and afraid. Desperate to regain my precious mobility. Afraid I won’t be able to. Equally afraid that I will be able to, but at a terrible cost. I don’t want to go back on a cocktail of medications, don’t want to be forced to wean her yet–
“I can inject the joints with cortisone,” says Dr. Singer. “It’s a short-term solution, but it will buy you a few months to wean her gradually before we put you back on something more systemic.”
“How long will it take before I see a difference? I can barely lift her.”
“If it’s going to help, you should start to feel it within a couple of days,” she says, then warns, “The injection will hurt.”
I don’t care. I am so desperate that I will sit here and let her throw bricks at me if that will help.
She sinks three long needles deep into my inflamed joints–one knee, two knees, one elbow. The needles feel like needles, but the pain is no worse than the pain I arrived with.
By the next morning I am able to swing my legs off the bed and stand without wincing. I can walk. I can stand at the counter, propping the baby against a hip with my good arm, and make my breakfast toast with my now not-quite-so-bad arm. The trap has been sprung.
I feel like dancing. Because I feel that once again I could dance. The needles are magic wands, and my rheumatologist is a fairy godmother who has granted me my three wishes: right knee, left knee, right elbow. I know, however, that the gifts of fairy godmothers are often fleeting things, and that this one may not last. I will always be waiting for the clock to strike and the dancing to stop. But for now, all that matters is rocking and walking this baby to sleep.
About the author:
Anna Schmidt is a writer, educator and public servant in Winnipeg, Manitoba. She has two daughters, the eldest of whom, now twenty, was the baby in this story. “I’m happy to report that when baby number two (now seventeen) came along, my rheumatologist and I had a more proactive plan in place and were able to avert such a dramatic rebound flare-up!” You can find more of Anna’s work on her blog at muddyrivermuse.wordpress.com.
3 thoughts on “Dance in Three Movements”
Great Anna, great story of courage and resolve. Your life and exprience is great inspiration for those who are going through very challenging times of their lives. Life is really sweet and sour.
Thank you for sharing your story.
My own experience of living with juvenile onset RA is very close to yours, from the delayed diagnosis, remission during pregnancy to the crippling flare-ups after the birth of each of my daughters. Your fear of not being able to care for your children, the feeling of being stuck in a chair after feeding the baby – all mirror my own experience.
My daughters are now in their 20s and fortunately I now see a more pro-active rheumatologist and feel well, apart from the joints that are worn out due to inadequate treatment over many years.
I love the way you have represented the feeling of “growing wings” when you have been held back by the pain, fatigue and swelling and suddenly feel free to move again.
Thanks again, with all good wishes
Thank you, Anna, for bringing us into your experience – one that I sense may not only be yours. What a gift you have for writing and being a dancer, I love the way you connect your experience with dance!