When I was younger, I was really active. I was a dancer, but I would get weird aches in my left leg and in my chest. Everyone said it was growing pains, but I wasn't so sure. Eventually I did stop dancing, and the pain went away -- but every so often it would come back. I figured maybe it was just lingering pain from my years of dancing, so I didn't really think about it all that much.
I played hockey, too -- I love hockey, and I'm a huge Buffalo Sabres fan -- but right around 2009, during a quite stressful time in my life, I started feeling really, really achy. I was only in my mid-30s, but I was having a hard time standing up and I was getting these weird sicknesses. I had shingles -- twice. I had a fever for a while, which had nothing to do with strep or any other flu-like condition that the doctors could find, and after a while they were like, "Well, it might be rheumatic fever." It might be rheumatic fever? What does that even mean?
My husband was in the military when I was having these health issues and in 2010, while he was in Afghanistan, my health declined even more. I was finally diagnosed with rheumatoid arthritis, as well as some other conditions -- osteoarthritis, degenerative disc disease, all sorts of wonderful things. I have nodules on my hands, my knees are swollen. I have a lot of degeneration in my joints and the discs in my back are really damaged.
I never thought I would stop working 12-hour days. I was a hairdresser and salon owner for years, and it was really rewarding. I opened my first shop when I was 20. I owned shops in North Carolina, in Buffalo -- I was basically on my own since I was around 13, when my mother died of leukemia. I was never afraid of hard work. I was into physical activity and I had a very active social life, and when I had to stop working it was a shock to me. I felt like I lost my identity and kind of spiraled downhill mentally because -- rightly or wrongly -- felt like a failure. No one had ever had to take care of me financially. I was always a breadwinner, always very independent, made my own money, bought my own cars, so when my health deteriorated so rapidly it was a huge blow. And it still is. It never goes away.
I would urge anyone diagnosed with RA -- or any condition that involves chronic pain -- to educate themselves on all of the treatments that are available these days before jumping into a specific regimen and thinking, "Well, this is it. This is the only way to deal with my problem." I tried physical therapy. I tried water therapy. I get shots once a month in my back and in my knee. You've got to keep moving, because when you stop moving you'll lose it. If there are new medicines out there, see if you can tolerate them. Don't give up!
But I would also caution people, too. If you don't feel like you have to be on pain medication, then don't, because it completely changes the way your body reacts to pain. It alters your relationship to pain, and it can be a sentence -- a reliance on meds -- for the rest of your life.
Chronic pain is really weird. But the way I used to handle my own pain before I began to find alternative ways to deal with it was definitely unhealthy. I was a punk rocker and I'd go to shows and I'd drink, and of course afterward I would be depressed. I felt terrible about what I was doing to my body -- but I guess I acted that way because I was angry because of what my body was doing to me! If you're feeling isolated, or depressed -- and it's very, very common to have these feelings with a chronic condition -- talk to somebody. Find a mental health professional you trust, and let her know that you are freaking out. Ask for professional advice on how to deal with the stress. It might take a while, but there are healthy ways of calming your mind without drugs. I'm not saying it's easy. But people might be amazed at the strength they find inside.