An Education #RedefiningRA

Elizabeth had just finished her master’s degree in education and was ready to start working when she began to feel that something was wrong. “I couldn’t sleep well. I was stiff when I woke up, and I had a hard time walking. I was tired all the time.”Se went to the doctor, who ran blood tests, but her rheumatoid factor came back negative, and Elizabeth was left with no answers beyond a suspicion of Lupus. “Sometimes I got the feeling that people thought I was looking for attention with all of these symptoms and doctor’s visits,” she said. “Meanwhile, I was in so much pain and sleeping all the time. It was awful!”

Looking for a second opinion, Elizabeth went to a different rheumatologist, who not only confirmed her Lupus diagnosis but also diagnosed her with RA. “I was floored. Yet it was a relief because at long last I felt that someone was listening.”

Leaving her doctor’s office after being diagnosed, Elizabeth felt scared. “I went home with so much medicine, and I didn’t understand why I had to take all of it,” she said. She began to research RA and to understand the condition and the medicines. Through her research, she gained the confidence to be more open with her doctor about what was working and what wasn’t.

Elizabeth and her doctor check her disease activity every six months with the Vectra test. “Upon diagnosis, I came back with a score showing very active disease. Since then, it’s gone down – and sometimes it bumps up – but it’s always been helpful to guide my treatment and to confirm what I’ve been feeling before the test.”

A single mother, Elizabeth homeschools her daughter. She is part of a co-op that meets weekly to share some of the teaching responsibilities and has found support within that group through other parents who also manage autoimmune conditions. Additionally, she’s very active in online support groups.

Her daughter recently was diagnosed with Juvenile RA, which further compels Elizabeth to advocate. “I am redefining RA by working to educate patients and doctors about rheumatoid factor negative RA. I was dismissed for a couple of years, and it can be daunting when you’re not being heard.”

“Every day I look for opportunities to find joy and purpose in my life. Recently I’ve been having a great time teaching children in China to speak English. I wake up every morning at 5 am and spend a few hours with them via Webcam before starting my day in America. They are so much fun, and I’m able to follow my passion for teaching.”

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