Real Profiles of Rheumatoid ArthritisPhotos © Lene Andersen
How long have you lived with RA?
43 years (since 1968 when I was 4 years old).
What advice would you give to someone who has just been diagnosed with RA?
Take control of your medical care, remember that it’s your body and your life and find a rheumatologist who’ll be a team player, understand that you’re in charge and that their job is to provide you with the information you need to make sound decisions. Get counseling – cognitive therapy can be especially helpful in terms of giving you coping skills. Don’t be afraid of your meds, they’re tools to help you get back to living. Live your life, remember that the RA is part of what you are, not who you are.
Do you use any mobility aids?
Power wheelchair since I was 16 (1979), currently on chair #4, a snazzy electric blue number. Have previously used splints, crutches, manual wheelchair for travelling, etc.
How has living with RA helped to improve your life?
Living with the ups and downs of RA for over 40 years has taught me resilience and a rather stubborn belief that I can do anything if I put my mind to it – when you know that pain isn’t the worst thing that can happen, your options expand. RA has taught me perspective and the ability to see the joy and beauty in the small moments – when you move a little slower, you notice things that others might not. And in a strange way, RA has taught me hope. With the perspective of over four decades of living in an uneasy partnership with this disease, I know that RA ebbs and flows, that good times can be followed by not-so-good times and that bad times – so far (knock wood) – are followed by good. The bad times still aren’t fun (understatement of the century there), but I have evidence in my own life that if you stick it through and fight hard, the good times come again, sometimes better than they ever were before.
Do you have any visible signs of RA?
All joints have deformities and limited mobility, some fused, surgery scars from synovectomies right wrist (age 10) and left knee (age 16), both resulting in fused joints and scars from both hips being replaced (age 16 and 17).
Can you please describe some of your favorite coping strategies for living with RA?
I’ve found mindfulness can be very helpful, as well as remembering to be grateful to my body for getting me through the day despite some pretty intense challenges. Developing filters so I can ignore the pain and get on with my life (denial ain’t just a river in Egypt!). Good books, good talks with friends, having the occasional hissy fit and then getting back up on the horse that threw me, being in nature helps calm and centre me. Writing – angst- ridden or not – and photography. Anything that takes me out of the dark place, shows me something beautiful or makes me laugh.
Can you please describe your current medical (traditional and alternative) treatments?
Current meds: Humira, Tylenol #2, Tylenol Extra Strength, Flexeril , codeine as needed, steroid injections. Have previously been on Enbrel, methotrexate, Paquinil, gold, every anti-inflammatory known to the human race, misc. painkillers.
Throughout my life, I’ve supplemented medical care/treatment with alternative medicine, such as acupuncture, naturopathy, supplements, shiatsu massage.
Is there anything else about yourself that you would like to share?
I was born in Denmark and moved, with my parents and sister, to Canada in 1982 and consider both countries home. I’m the eldest, my sister Janne was born when I was 10 years old (that’s her sticking the bouquet in my face at her wedding – true sisterly love!). My family and I are blessed to have found a large chosen family both in DK and Canada, expanding our small family into a much larger one. I was originally a social worker and worked in policy development in the human rights field, but am now in my second career as a writer and photographer. Have the teensiest fascination with animals, especially tigers, share my home with Lucy the Wondercat and way too many books and I share my life with my love, David.