Massillon, Ohio, United States
How long have you lived with RA?
I’ve been battling RA for 25 years. I was one of the youngest patients to ever be diagnosed in the northern Ohio area (at 9 months old). Luckily, I’ve had an amazing support system to stand beside me through all the trials and hard times that have been sent my way because of RA.
What advice would you give to someone who has just been diagnosed with RA?
The best advice I ever received was to try to stay as active and as positive as possible, even when it feels completely impossible. My parents always tried to provide me with as normal of a childhood as possible, and although I knew I was different from other kids my age I never felt out of place. However, there were many times when I felt alone and would question God’s reasoning behind all my health complications. Connecting with other RA warriors has been a great help for me. I no longer feel alone and love talking to people who actually understand. I would tell anyone who has been newly diagnosed to keep that positive attitude and connect with other people who have the disease because unfortunately, most people don’t understand the disease unless they have personally dealt with it. I’ve tried many times to explain what is happening to my body to my friends, but some of them just don’t get it. Hearing the word “arthritis” is completely deceiving when it comes to RA. I don’t think anyone realizes just how much of a person’s life the disease impacts.
Do you use any mobility aids?
When I was younger, my biggest problem joints were my knees and wrists. My knees were locked at 90 degree angles and my family was told I would never walk again. I slept in leg braces every night and fortunately I am able to walk.
How has living with RA helped to improve your life?
Although sometimes I feel like my younger years were stolen from me, I try to stay appreciative of the things I do have and the things that I can do. I know that for me, this has litereally been a lifetime illness but God has a reason and a plan for me-I hope I can figure out exactly what that is sooner than later.
Do you have any visible signs of RA?
I have visible contractions of my wrists and they are stuck in one position. This makes it very difficult to do simple things like open bottles, to cut vegetables. As I’ve gotten older my neck, back and elbows have become more and more bothersome.
Can you please describe some of your favorite coping strategies for living with RA?
I try to count my blessings and remind myself that things could always be worse-but having an understanding support system has made the biggest difference in coping with RA.
Can you please describe your current medical (traditional and alternative) treatments?
My current treatment consists of Enbrel injections, plaquenil, steroids & lots of vitamins to boost my immune system & treatment really takes a toll on my body. Because I haven’t seen much improvement, my meds will be changing once again.
Is there anything else about yourself that you would like to share?
I have days where I literally cannot turn my head. I was also told I have visible bone thinning (osteoarthritis) now on top of everything else.