Life After a Rheumatoid Arthritis Diagnosis How Rheumatoid Arthritis Symptoms Changed One Musician’s Career

Rheumatoid arthritis symptoms like aching joints meant musician Rain Perry could no longer play her guitar. But instead of singing the blues about her rheumatoid arthritis diagnosis, the songbird chose to look on the bright side of life with RA. From help from her family to staying active, here’s how she copes... At age 22, singer-songwriter Rain Perry was dreaming of superstardom. But her guitar-playing hopes were suddenly dashed by inexplicable pain in her hips, knees, wrists and hands. Several blood tests, X-rays and consultations later, she got a rheumatoid arthritis diagnosis. The chronic, progressive inflammatory disease causes pain and swelling in joints and meant that Perry had to hang up her guitar. “I was shocked, scared and sad,” she says. Instead of giving up, however, she kept writing and became an advocate for people with arthritis. In 2000, she produced "Agility: A Woman’s Music Festival to Benefit the Arthritis Foundation." Several albums later, her song “Beautiful Tree” was picked as the theme for “Life Unexpected,” a 2010 TV series on The CW network. “I’ve learned that a good support system is so important for a young woman living with RA,” says Perry, now 45. That’s one reason she launched www.RainPerry.com, a weekly blog about life with rheumatoid arthritis. “I wanted a place where women just like me can share stories, tips and tricks, as well as gain comfort and support,” she explains. Read on to learn how Perry handles rheumatoid arthritis and balances being a mother of two with stiff joints. What led to your rheumatoid arthritis diagnosis? I first began experiencing pain in my knees, then hips. Then [it] started traveling to my hands, wrists and back. Yet none of my doctors seemed to be able to explain why. I went to several doctors who conducted blood tests, X-ray and scans and who told me “it” was something in my bones. But no one could really pinpoint the cause of the pain. You were 22 years old when you got a rheumatoid arthritis diagnosis. How did you feel finding out you'd be living with rheumatoid arthritis at such a young age? Finally having a “real” diagnosis was a relief because that meant the pain wasn’t in my head. But hearing the words “rheumatoid arthritis” was scary. I wasn’t even sure what [it] was. What did you do once you were diagnosed? I read all I could get my hands on and asked my doctors a lot of questions about diet, exercise, medicines. [Education] is the best way to understand things like triggers, treatment etc. I had a very rough decade in my late 20s and early 30s, and was headed for life in a wheelchair because of [rheumatoid arthritis] pain and progression. Thankfully, my doctor found a medicine that slows the progression of my RA and eases [rheumatoid arthritis] symptoms like pain, swelling and stiffness. A wheelchair is no longer necessarily in my future. Did others in your family have rheumatoid arthritis? My mom died when I was young. Looking back, she probably had RA too. That’s the only possible family link I know of. You have two daughters now. Did you worry that having RA would prevent you from becoming a mom? That was a concern, since I was diagnosed long before I had kids. I didn’t just worry about the physical ability to have kids – and the pain that might be associated with it – but also my ability to be a present and active mom. Do you compare yourself to moms without RA or beat yourself up mentally if you can’t do something they can do because of rheumatoid arthritis symptoms? It’s tough to not make those comparisons. It’s natural for any parent to want to be a super mom. Because I was diagnosed years before having my two daughters, RA was already part of my everyday life. So when I became a mom, I knew that [some activities] might be tough to do. But I wasn’t prepared for the feelings of inadequacy that came from not always being able to be super mom. How did you cope with those feelings? It was tough, and I went through a few years of depression because I couldn’t always do things like play soccer or run around on field trips like other moms. Realizing that my husband, Bill, and daughters, Sarah and Stella, think I’m perfect just the way I am helped me snap out of it. I stopped trying to keep up with the Joneses. How do you stop the comparisons? Instead of thinking, I wish I could be like so-and-so’s mom, or judging myself by other moms’ abilities, I threw myself into things I could do – like reading or singing with my girls, making dinner together – when they were little. Instead of being the soccer coach running up and down the sidelines, I’m [their] loudest cheerleader. What are some strategies you use to keep RA from sidelining you? I try to be involved as much as possible, even if that means I can’t do as much as my friends or family. I do similar, yet different things that are part of everyone else’s [activities]. For example, swooshing down the slopes is tough for me, but that doesn’t mean I skip out on the family ski trip. When my husband and kids go skiing, I recharge my batteries with a scenic snowshoeing excursion. I also take advantage of their time on the slopes to catch up on reading in front of the fire or get some much-needed down time. That way I’m there physically. Even if it’s just to watch, I’m part of the fun. What else do you do to avoid getting depressed about your health? I look for the silver lining. In fact, if it hadn’t been for [the rheumatoid arthritis diagnosis] I might never have recorded the hit song “Beautiful Tree” that became the theme song for “Life Unexpected” [which ended in December 2010]. Ironically, RA helped my career as a singer and musician. How? RA has given me the gift of learning to really listen to music to understand how it’s made. It helped me fine-tune my sound. Does a support system help you cope with rheumatoid arthritis symptoms? Definitely! A strong support system helps if I start to feel blue because I’m unable to strum my guitar or do things other women my age can do, like go jogging. How does your family help? My husband and family are wonderful. They help, but just enough. They won’t let me use RA as an excuse to [avoid] something I can do, like go to dinner, enjoy a movie, take a drive and so on. They hold me accountable and won’t allow a pity party. They’re great at focusing on all the things I can do to remind myself of all the wonderful things in my life. I also credit sharing my rheumatoid arthritis diagnosis and progress with friends. Having them know what’s going on, so they can understand that I might be moving a little slower or feeling a bit sore. How do you answer the people who say that RA is an old woman’s disease? If I had a dollar for every time someone asked, “Isn’t that an old person’s disease?” I’d be a very rich woman! RA strikes women more often than men, and commonly affects people age 40-60 years old. But the fact is, young people get it too. How do you work against that stereotype? By being very open about having RA. I don’t make excuses for the inability to do something or moving slowly. If I talk about it and educate people, like my kid’s friends’ moms, everyone’s more at ease. [They] understand that osteoarthritis usually occurs in older people, but that RA can affect any age. This approach is especially helpful during a flare up of [rheumatoid arthritis] pain or stiffness because that can make it tough to stoop to reach things on low grocery store shelves or to stretch to pluck items off high shelves. I simply ask for help. I just say that, due to my RA, I can’t reach that, and ask if they’d help. And fellow shoppers are often very friendly and happy to assist. For more information, visit our Rheumatoid Arthritis Health Center. How Much Do You Know About the Types of Arthritis? About 46 million American adults – nearly one in five – suffer from some type of arthritis.