A JRA Diagnosis Reached by Exclusion
Today, there are some things that remain difficult for Ramsey. “It’s hard for me to stand for more than a half-hour at a time,” she says. “My ankles really start to hurt.” But that hasn’t prevented Ramsey from riding her bike. For the last 12 years, she has ridden her bike in the 8-day, 575 mile California Coastal Classic to raise money for the Arthritis Foundation. But the annual event does more for Ramsey than raise funds.
Growing Up With Arthritis in the 1970s
“I had arthritis long before the internet,” Ramsey says. “In 1973, there weren’t as many options. You couldn’t just look things up or find other people like you. We went to Johns Hopkins, and some doctor gave me a crazy amount of aspirin to relieve the pain. I ended up getting a bleeding ulcer from that.”
Gold Injections, Orthotics, Knee Joint Draining: Decades of Treatment Trial and Error
For Ramsey, it’s been years of trial, error, and more trial. “I’ve been on every medicine that came out, as it came out,” she says. “I was in a gold study in Washington, DC, when that was the new treatment. Any arthritis drug that was out there, I was on. It was mostly to treat the pain in my ankles. I would have my knee drained most of the time. I didn’t have a lot of injections like cortisone. They tried to avoid that. But they would drain my knee frequently. The doctors also had my parents put a bar across the door, so that I could hang on it to help straighten my arms. I had a lot of orthotics — braces that would hold my arms straight to keep them from getting contracted. I would say, ‘At least I’m not in a wheelchair,’ and my mom would say, ‘Well, you were in a wheelchair. You just don’t remember it.’" Today, there are more effective treatment methods to keep the arthritis under control, explains Ramsey. “Biologics are great, but they come with side effects and serious issues. It’s not a total solution. Sometimes people say, we’ve cured arthritis! But really, you’re just shutting down the symptoms for a little while.”
Living With Joint Pain, Day In and Day Out
“I was never going to be able to walk for 10 hours a day without any issues,” Ramsey says. “I started with cartilage in my ankles, and now it’s all gone. I had to stop playing softball when I aged out of slow-pitch into the fast-pitch game, because I couldn’t lift my arms to hit the ball. (I also had a flare with my elbow at that time.) But I could still ride my bike. I’d ride around the block a million times, like all ’80s kids did (laughs)."
Trying to Let Go of Arthritis Pain as a Child
“I wouldn’t say I had a bad childhood,” notes Ramsey. “I probably had a different childhood. My parents didn’t have the internet. We didn’t know anyone else as a kid who had RA. So I would try everything. You develop a different mindset. You don’t remember the pain. Since pain is the only thing you know, you just get on with what you are doing. I know I have pain, but I let it go. I release it from my mind.”
The Search for Something Life-Changing Leads to a Bike
“In January of 2006, both of my grandmothers passed away in the same week,” Ramsey says. “One had been very ill, but the other death was a bit shocking. I felt I had to do something big after that. I would love to be able to climb a mountain, but I can’t. On the internet, through the Arthritis Foundation website, I saw the California Coastal Classic. I said to myself, ‘I can do that!’ I don’t know why I thought that, I hadn’t had a bike in 15 years (laughs). I went to a bike shop to get a hybrid bike which, in hindsight, is crazy, because its super heavy. I got my doctor’s okay and started training. Needless to say, it was way harder than I thought it would be, but I did it. I got a much lighter road bike and gave it a go.”
Mental and Physical Training to Get Ready to Ride
“Like when I was a kid, I rode my bike around the block a thousand times, only this time to prepare for the ride,” Ramsey says. “I wasn’t nervous about the distance. I was more nervous about being on the open road with my bike. My parents were like, ‘You’re going to do what!?!?’ “Cycling is a more mainstream now than it was a decade ago. When I go home to Virginia, I see more and more cyclists on the road. But 12 years ago, it was more of a crazy idea, riding on roads with a bike by yourself, than it is today. I wasn’t nervous about the length of the ride, because I’m the kind of a person that is not going to be disappointed if I don’t make it. My boyfriend likes to go mountain biking. He will go over trees and all kinds of crazy things. I’ll say, ‘I’m going to try it, and it’s okay if I can’t. I’ll do the best that I can and not feel bad.’”
Going the Distance With Rheumatoid Arthritis
“The first day of the ride is the longest — 80 to 90 miles, depending on the route. It’s physically one of the hardest days. You’re pumped up and excited. That day is always hardest, but that year, it was — wow! I walked up some hills that first year. It’s a fundraising ride, so I felt that I wanted to finish for that reason. I had taken people’s money, and I wanted to finish. “The biggest thing was really figuring out the nutrition stuff. When I got there, at the rest stop, they had things like bananas and peanut butter sandwiches, so I thought that’s what everybody ate. I got really sick that day and the second day, just throwing up. My stomach can’t handle anything greasy like that anymore. Now I eat sport beans and these light, chewy tubes, stuff that’s not sweet. I learned a lot that first day. It was hard physically, but the nutrition thing was a hot mess.”
A Breakthrough on Day Three of the Ride
“I didn’t finish the first two days, but if there’s one thing I am, it’s stubborn. The third day was a 45-mile route, which was one of the shorter routes from Monterrey to Big Sur, and I finished that. It’s almost like a rest day for the ride. The following day, I do remember crying when I finished, because it was about 70 to 75 miles, along this iconic California coast. There was 6,000 feet of climbing in it. It was this intense thing. It took me 9 or 10 hours and it was pretty much dusk, but I remember thinking, ‘Oh my god, I finished this!’ and I started to cry. When I got to the camp, they told me, ‘Oh, you’re staying in a hotel? That’s 2 miles south.’ I was like, ‘Wait, I have to get back on my bike?’ Then I really wanted to cry (laughs)!”
How Cycling Works for Ramsey and Her RA Symptoms
Ramsey says she would 100 percent rather be on a bike instead of walking. “Cycling is so meditative. When you are out on the road, you can just focus on breathing and an even pedal stroke. It clears my mind. That’s when I have a chance to think and figure things out. I don’t notice pain, while I’m riding. If there’s really bumpy road, I’ll feel it in my left ankle and left knee. My knees and hips are always compensating for my ankles. My arms aren’t an issue necessarily, except for fact that I can’t be in one position for any length of time, even If I’m walking. On the bike, I’ll do baby pushups to keep my arms moving.”
Finding Your Own Road When You Live With Chronic Disease
Ramsey realizes that cycling may not be for everyone with arthritis, but there is certainly something out there for everyone. “You need to try everything,” she says. “You should always check with your doctor first. But you would be surprised how adaptable things can be for people with arthritis. I also do Pilates, and my teacher adapts things for me. My bike is adapted for me. You should feel as comfortable on the bike as much as possible.”
Exercise Can Help With Body Weight Management and Maintenance
“Moving every day is a really important part of staying thin,” she stresses. “Every extra pound of weight is an exponential amount of pressure on your joints, especially in the lower body. If I gain five pounds, I really feel it, so I always keep moving.”
Physical Therapy, Acupuncture, and Massage Help Her Keep Going
Physical therapy also helps, says Ramsey. “Stretching the muscles apart lets synovial fluid in and lubricates the joints,” she explains. “We stretch my tendons and muscles, because if I didn’t do anything, my arms would become more contracted then they were when I was 13 months old. The body tends to do what is easiest, so I try to keep things lengthened as much as possible. I also do acupuncture, cupping, and massage. Having a disability is like having another full-time job. It takes a lot to keep myself as healthy as I can be. I may not be able to be as healthy as the next person, but I can always be as healthy as I can be.”
Riding Around With RA Beats Sitting Around With RA
As hard as it can be to move with arthritis, Ramsey knows the alternative is much worse. “I can’t walk much, so if I wasn’t doing anything, I’d be sitting around, which isn’t really good for anybody. Without the biking, I would be super limited and probably depressed. I can also do the elliptical machine at the gym for 20 to 30 minutes. I had a woman once say, ‘Well I don’t like going to the gym.’ To which I said, ‘Do you think I like going to the gym (laughs)?’ You have the choice. You have to move.”
