Oh, Massage Envy, how do I love thee? Let me count the ways! Massage Envy Spa has raised more than $3 million in events to help the 50 million Americans, including 300,000 children affected by the disease. I am one of those 50 million. I was diagnosed with Rheumatoid Arthritis sixteen years ago at the age of 26. With my diagnosis came fear and a misunderstanding that arthritis was an old person’s disease. I didn’t want to accept that I had arthritis. I was young and had always been an active person. I played sports my entire life and went on to play college basketball. How could I have arthritis?
She’s not talking about her recent prom or even her summer plans to study in California. She’s talking about last week’s visit to the National Institutes of Health (NIH).
Lexi, who was diagnosed with polyarticular juvenile rheumatoid arthritis at three years old, found her way to the NIH after she shared her story with Congressman Rodney Frelinghuysen (R – NJ) at the Arthritis Foundation’s Advocacy Summit back in March. Struck by her narrative, Frelinghuysen invited Lexi and her entire group to visit the NIH and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) so that they could see firsthand the research that is being done to combat arthritis.
Continue reading One Story Can Change Everything: Visit Gives an Inside Look of the NIH
Social media is great for a lot of things — reconnecting with old friends, finding that next job, catching up on the news and perhaps even wasting a little (a lot of!) time. But when Anna Legassie logged on back in May, she wasn’t doing any of those things. She was just trying to get her medicine.
From Excitement to Disappointment
Anna, now 31 years old, was diagnosed with systemic juvenile rheumatoid arthritis (JRA) when she was 11 years old. She has endured six hip surgeries, multiple hospital stays and a constantly changing cocktail of medications to keep her arthritis at bay. After a particularly difficult spring suffering through the side effects of methotrexate, she and her doctor decided to decided to try Orencia (abatacept), a biologic drug that she would would receive by infusion every four weeks. Anna had tried most of the other biologic drugs on the market. None of them had been a fit for her.
Some rising high school seniors will scout colleges for their social scene. Many might choose a college based on its proximity — or lack thereof — to home. Others will simply go where their friends are going. Lexi Narotzky has a different set of criteria.
“I’m looking to go to Vanderbilt in Nashville if I can get in,” says Lexi. “It’s a smaller school where I won’t have to walk as far. The campus is very flat and very accessible for days I am not feeling well. And, the weather is better than it is here in New Jersey.”
Lexi has been making choices like this since she was a toddler. Lexi clearly remembers when she was diagnosed with polyarticular juvenile rheumatoid arthritis, even though she was just three years old.
“I remember the exact night it all started,” Lexi says. “I had just gotten home from dance class, and I was wearing my tights. All of the sudden, I couldn’t move. “
In the weeks that followed, Lexi spent many days in the hospital and visited multiple specialists. High fevers and swollen joints stumped doctors, even at some of the country’s most renowned medical institutions.
Continue reading Lexi : Simply Telling Her Story Leads to an Important Invitation
When you’re living with arthritis, it might seem like you’re continually coming up against the things you can no longer do – so many Nos in your life. On top of ongoing pain, stiffness and fatigue, arthritis can create mobility problems that interfere with your career, social life or activities you’re passionate about.
So what can you do to turn that around – to start saying Yes again? What enables some people with chronic illnesses to live full, satisfying lives despite their disease and limitations?
Many factors come into play, and everyone’s situation is unique, but one quality that helps these people is one that anyone can develop – resilience. Experts say that the ability to navigate and even learn from adversity helps you keep going, mentally and physically, no matter what life throws your way.
“Individuals with arthritis and related diseases who find a way to be resilient tend to stick to their treatment plan more often. They manage their health better, and have an easier time dealing with negative situations, too,” says Rochelle Rosian, MD, a rheumatologist at the Cleveland Clinic. “Resilience allows you to make arthritis one part of your life instead of your whole story,” she says.
She makes no bones about: Alicia Arden is a diva in spandex. Nearly every day, she stretches on the Lycra and with perfectly coiffed hair leaves work and heads to the gym, where she works out for two hours to ease her rheumatoid arthritis (RA) symptoms and fight for her life, she says.
But she wasn’t always so committed to improving her health. The Warrenton, Va., resident, who also has epilepsy, was severely overweight when she was diagnosed with RA in 2008. Barely able to walk due to the pain in her knees, hips and right shoulder, it took a hard dose of reality from her doctors to motivate her: Lose the weight or slowly die, they told her.
Alicia joined Weight Watchers and shed 50 pounds. Then she gained it back. In 2011 she started aquatic exercise classes. She stuck with it, slowly increased her workouts and hired a personal trainer and nutritionist. “Within one year I lost 102 pounds and I have not stopped,” she says.
Continue reading Alicia Arden Shares Journey to Losing 100+ Pounds with Rheumatoid Arthritis
Award-winning chef, cookbook author, owner of three New York restaurants and overseeing a fourth in London, Seamus Mullen, 40, seems unstoppable. But just a few years ago, he was battling pain from sometimes-debilitating rheumatoid arthritis (RA) – a disease that threatened his career and his future.
When Arthritis Today first talked to Seamus in 2010, he was executive chef and partner of a trendy Spanish restaurant in New York City. It was a cloudy spring afternoon, and Seamus was in the kitchen prepping for the evening rush, facing the task of cutting up a 35-pound lamb.
He mentioned that his hands were hurting that day – the only hint besides a slight limp that the talented, up-and-coming chef had been diagnosed with RA a few years earlier. It had been a bolt out of the blue – he has no diagnosed family history of the disease – and had turned his world upside down. But it also fueled his determination to continue doing what he loves.
With the precision and patience of a surgeon, he used two knives, a Japanese meat cleaver and a saw to separate the lamb, gently placing each part – the rack, neck, shoulders, and so on – to the side. By midnight, when the restaurant closed, he had worked 12 hours, though too often he worked 15 or more.
Continue reading Star Chef Seamus Mullen Sizzles Despite Rheumatoid Arthritis
Five years ago, Jessica went to her doctor to ask about prescription antidepressants. “I couldn’t understand why I was exhausted all the time and why getting out of bed was so difficult.” A health history and exam revealed that she wasn’t depressed; she had rheumatoid arthritis (RA). “At first, I struggled with the diagnosis. I’ve always been super active – I love to play tennis and hike, and I have children. RA had seriously damaged my hands, too, and I write for a living.”
For Jessica, reclaiming her life was not about positive thinking, “It was about good medicine and good therapies [including acupuncture],” she says. “Anyone who tells you living well with RA is all about your attitude is delusional or a liar,” she says. “Sometimes I get really irritated that I have this disease. That doesn’t make me sicker – it makes me human.”
Sticking to her treatment plan has minimized the severity of her RA. “For me, biologics have been crucial. They helped get rid of the fatigue, which allowed me to regain my stamina and get back to my life,” says Jessica. “I see my rheumatologist regularly and I’m totally honest with him; I don’t pretend my pain is a 2 on a 1 to 10 level if it’s really a 6.”
It’s hard to believe that Cindy Lane Ross has been dealing with serious health issues most of her life. A fitness instructor and nutritionist, she owns a 12,000-square-foot fitness center with 14 personal trainers, plus two fitness clothing lines (including one for joint support at medicalfitnesssolutions.com), a website design company, and online fitness and nutrition program (cindylaneross.com). She also regularly appears in nutrition and fitness segments on the local Fox station in her hometown of Mobile, Ala.
Cindy, now 37, was diagnosed at 22 with rheumatoid arthritis (RA), was nearly 100 pounds overweight at one point, and recently was diagnosed with osteoporosis. With each new challenge, she steps up and takes control.
She played professional tennis until she was diagnosed with RA. “My tennis career came to a screeching halt,” Cindy says. “I was depressed and had no clue what I wanted to do with my life.” The pounds crept on, accelerating during the four years she cared for her mother. When her mother died in 2006, Cindy, at 5 feet, 6 inches tall, topped the scales at 220.