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#RedefiningRA and Really Living

It’s really hard to get Carol down. A bubbly go-getter, this motorcycle-riding, belly-dancing grandmother of six works in an oil refinery by day and enjoys a rural, outdoor lifestyle with family in her leisure hours. But in 2004 she was a little off her game. She had been in a car accident. There were three years of visiting doctors for pain, numbness, swelling, and some difficulty breathing until she was referred to a rheumatologist who diagnosed her with RA.

Carol diagnosed with RA“When I was first diagnosed, I didn’t know anything about RA. So I read up on it, and I wasn’t very pleased with what I read. I was terrified that I was going to be trapped and wouldn’t have the freedom to do what I loved. The thought of living in my recliner wasn’t what I considered living.”

Carol’s doctor pursued treatment aggressively until they found a therapy that helped her feel much better. “I felt so good I thought I was cured,” said Carol. So it was that much more devastating when the treatment stopped working for her. “But then I realized that it was nothing new. When you are having a bad day, you think it will never end, but the next day you might be able to do anything you want.”

It was with that “don’t-hold-me-back” attitude that Carol first got involved with Sisters of the Dance. At 58 years of age, she is the baby of this belly-dancing troupe whose members all battle chronic medical conditions. The group performs regularly at community health events, nursing homes, and other local venues.

“They are my sisters. We are so bonded to each other, and they look after me,” said Carol. Carol’s biggest challenge is convincing her dance sisters that she’s up to practice. “They are like mother hens, always looking after me and making sure I don’t overdo things. They change the dances so they are easier for me to learn and so there’s no chance of my falling. They make it so that I can participate even on a bad day.”

She’s also begun taking her motorcycle out for short rides. “I’m working up to a longer ride so I can start commuting by bike again soon,” she said. Gripping the handlebars is a little tougher with RA, so she had special handgrips made. “I will do what I want one way or another. If one day I get too old to ride a motorcycle, I’ll ride a trike!”

Prone to overdoing, Carol relies on Vectra. “I can fool myself that I’m doing better, but the Vectra score doesn’t lie. It helps me realize when I haven’t improved and need to proceed to the next step in my treatment plan.”

“Vectra has enabled me to redefine RA by helping me get the treatment I need and providing me with a tool I can take to my doctor, one that she respects as well. RA will never define me. I’m never going to give up.”

How have you followed your passions with RA? What challenges have you encountered along the way? Let us know how you are #RedefiningRA in the comments section below!

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