What advice would you give to someone who has just been diagnosed with RA?
Seek out a good rheumatologist quickly. I know it is a scary time in your life but seek treatment immediately. The longer you wait, just means that more irreversible damage is being done to your body. I put off going to the doctor for a while thinking I was just feeling the abuse that racing motorcycles had put on my body. When I did go to my GP about my pain, I was improperly diagnosed with synovitis and was only taking Aleve for a year before changing GP’s and discovering I had RA.
Also, do your own research on RA. Library books, magazines, the internet, use all resources to learn everything you can about RA. And remember, everyone is different … what works for one person may not work for you, but don’t get discouraged. There are lots of options so talk with your rheumatologist about them.
Do you use any mobility aids?
How has living with RA helped to improve your life?
It has made me slow down and appreciate the day to day things that I so often took for granted. A sunrise or sunset, a fresh snow, the list is endless. Pre RA days vs today is almost equivalent to black & white vs color for the way I view life now.
Having RA is not the end of the world, yes your world changes. You still enjoy life and those brief moments that you can do something pain free make you feel like your on top of the world now.
Do you have any visible signs of RA?
My fingers and toes are hooking and turning. It’s not unusual for my hands to swell at work. I also walk with a slight limp from the damage done to both of my feet.
Can you please describe some of your favorite coping strategies for living with RA?
I think the best strategy for me has been to to stay focused on something else, such as my motorcycles, blogging, working out or even work. Your mind is a powerful tool, use it to your advantage. If I sit down and start thinking about the pain, before long, I am hurting worse. I don’t have time to hurt worse. If you can, get up and do something to keep your mind occupied. I still exercise, however, there are some days when I just hurt too bad, so I don’t. I don’t worry about it, nor do I feel guilty like I did when I was younger and healthy.
Can you please describe your current medical (traditional and alternative) treatments?
I take five 2.5 mg Methotrexate each week, two 1 mg Folic Acid each day and one Orencia infusion each month. (Enbrel did a good job for me for 5 1/2 years but suddenly the Enbrel just wasn’t working for me any longer. I have just recently switched to Orencia.)
Is there anything else about yourself that you would like to share?
I would like to invite you to check out my blog: Dual Sport Life. It is written from a personal impact point of view on day to day life with RA, plus I write about some of the rides I go on from time to time.
I have always been very active with football, baseball, racing motorcycles and riding bicycles. I have broken 14 bones, had 3 concussions and knocked one front tooth out. Mentally I am ready to get back out and start racing again, but my body can no longer take the physical abuse from racing for 3-4 hours at a time.
My daughter and I love music, mainly rock and blues, so we go see shows together when we can. It has become a strong bond between us and it makes me smile now when I get an email from her about an upcoming show…I know she is wanting to go.