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Robin Mayhall: Smart Solutions and a Positive Spin
Rheumatoid arthritis can cause disabling pain and tenderness, but with ingenuity and a trick or two, Robin doesn't let her condition hold her back.
By Cynthia Ramnarace
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Robin Mayhall's life was turned upside down by a spider bite.
She was 20 years old and starting her senior year at the University of Texas. Her hand swelled. Two weeks went by and instead of getting better, her hand started to close up like a claw. Perplexed as to the cause of the swelling, an orthopedist did exploratory surgery. There was no infection; just unexplained swelling.
A few days later, Mayhall woke to find her knee ballooned to the size of a melon. She asked her surgeon about it. "That was the moment my whole life changed," says Mayhall, now in her 40s living in Baton Rouge. "He stepped back and looked at my knee for a really long time. He didn't say anything. Finally he said, 'I think you need to see a rheumatologist.'"
Diagnosis: Rheumatoid Arthritis
Shortly after her 21st birthday, Mayhall was diagnosed with rheumatoid arthritis, an autoimmune disease where the body attacks the lining of the joints. The result is extreme pain, swelling, fatigue, and a low-grade fever. Mayhall believes that the spider bite initiated an immune response, which in turn triggered an underlying genetic predisposition to the disease.
Most RA patients are diagnosed in middle age, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, but it can affect young adults and children as well. The condition has been diagnosed in about 1.5 million Americans, the majority of them women.
"With me, my joints always feel hot — they even look red and feel tender to the touch," says Mayhall. "The best description [of RA] I ever read was from a Stephen King character with rheumatoid arthritis who described it as having broken glass in your joints. They feel crunchy and painful. When you're not moving, it's just sort of a dull ache."
In the decades since Mayhall was diagnosed, she's tried a laundry list of medications to control the pain and slow the joint damage that are the hallmarks of the disease. She's had more than a dozen surgeries, including double-knee replacement and hip replacement after the joint damage became too severe. She also had her thigh bone replaced with a metal rod after the bone was eaten away by large doses of the steroid prednisone, a drug that gave her enough relief to stay in the workforce but left her with stress fractures in many of her bones.
Daily Life With RA: Robin's Tips
Now for Mayhall, a relatively new medication called Orencia (abatacept) has reduced swelling and fever and left her feeling "so much closer to normal." But because she still has to live with more than a decade's worth of damage to her joints, preventing any further inflammation is a constant mission.
Gripping the handle of a coffee cup puts too much weight on her finger joints, so she instead cups the mug with her palms. When approaching a swinging door, she enlists her shoulders, and not her hands, to push her way through. She stops by the grocery store three times a week, instead of once, so that her load is not too heavy to carry. She runs the dishwasher instead of hand-washing, even if it's not a full load. And she doesn't have to look far for a "reacher," which she stashes in strategic locations in her condo, at work, and in her car. The claw-like device allows her to easily retrieve items high up or low down without reaching or crouching.
"I've also learned to ask for help," says Mayhall. "If somebody says, 'Hey, I'm going to the grocery store, do you need something?' I'll say, 'Yeah. I do.' I've learned that accepting help when it's offered is actually a gift to the other person as well."
These creative solutions have helped Mayhall maintain a successful career as a corporate writer and a full life with RA. Here are some of her other recommendations:
- Always ask your doctor before trying nutritional supplements, dietary changes, or alternative treatments. You never know what could interact with your medications.
- Adopt an anti-inflammatory diet that's rich in fruits, vegetables, and omega-3 fatty acids, which might help reduce joint swelling.
- Be optimistic about your life with RA. "I always really try to see the glass half full," says Mayhall. "Instead of being sad that I had to get my knees replaced when I was 27, I feel very grateful that the technology is there, that my knees are in such good shape, and that I have great insurance that pays for it."
- Keep your mobile phone on you at all times in case of an emergency, such as a fall.
- Exercise hurts, but do it anyway. "I have a love-hate relationship with exercise," says Mayhall. "But I have to do it for weight management.
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