Real Profiles of Rheumatoid ArthritisPhotos © Vanessa V
Toronto, Ontario, Canada
How long have you lived with RA?
5 years, but first flare up was limited to just my knees. Took a year to diagnose them, and after 2 years on hydroxychloroquine, I was declared in remission, and stopped taking the meds. UNTIL April 2011, flare up came back with a vengeance. Started in my lower back, and spread everywhere. Knees, ankle, wrist, entire left arm, jaw, neck and lower back. An MRI wasn’t able to confirm AS, but I do a form of seronegative RA. I am currently waiting ridiculously long for my rheumatologist appointment, so I decided take matters into my own hands. I am also not a huge fan of pharmaceuticals anyways. So while I wait for my appointment, I am reading as much I can and about 2 months ago decided to try diet and alternative therapies. I stopped eating all meat except organic salmon, no dairy, no processed food, no white flour, no refined sugar, no nightshade veggies (tomato, eggplant, peppers), no fried foods, no vinegar, no spicy foods. I keep a list of my fridge called the “Terrible” list, and whenever I eat something that causes a reaction, it goes on the list. Reactions happen as quickly as 10-24 hours now. I ate a cupcake at a bridal shower and couldn’t move my entire right hand for a week. (NO MORE CUPCAKES!) Basically I eat fruit, veggies, nuts, organic yeast free rye bread, salmon and occasionally eggs. I juice everyday and take a pretty big lot of supplements (even more than i usually take). Now don’t get me wrong. I LOVE food, but i decided that walking was a little more important. My diet doesn’t sound very exciting, but if it means my symptoms are easing up without drugs. I’m all in. It took about 2 months, but i am 95% symptom free (bad days still exist, but not like they used to be), and am slowly starting back to my yoga practice, and even went for a run/walk last week. I’m not perfect, but I’m doing this DRUG free…for now.
What advice would you give to someone who has just been diagnosed with RA?
Be patient. Find kindred spirits. Twitter has been a great place for connect with others who understand what you’re going through. Its nice to not have to explain myself whats wrong with me over and over.
Do you use any mobility aids?
I have a cane, that i use when my knees get really inflamed. I haven’t had to touch it in almost two months!
How has living with RA helped to improve your life?
I am so much more patient now. I appreciate little things. I’ve also developed a new understanding of how food affects the human body.
Do you have any visible signs of RA?
Just really inflamed knees at the peak of a flare up.. And lately since my diet has been changed, I mostly get compliments on how great I look. Ha!
Can you please describe some of your favorite coping strategies for living with RA?
Music. On a bad day, turn up the music, and just lay and take it in. Also my yoga practice has helped me focus and meditate when I need it. I am also not afraid to cry if I have to. Always feel better mentally after a good cry.
Can you please describe your current medical (traditional and alternative) treatments?
Diet and acupuncture. I was on Voltaren at the peak of this flare up, but DRUG FREE for almost 2 months.
Is there anything else about yourself that you would like to share?
Being this sick has really given me a new appreciation for my family (have been AMAZING), my yoga practice (Ashtanga yogi over 2 years now), my ability to run again (not for very long, but I’ll get there) and my friends (who have been equally as amazing). Stay strong, don’t be afraid to make changes in your life. You may not see the results right away, but they will come.
by Daniel P. Malito
Most of the congressmen, pundits, and organizations out there who are championing cuts in Medicare have no visceral ties to the program and thus will not be greatly affected by any of the changes that have been made, much less any of the new cuts that are being proposed on a daily basis. To combat this, I’d like to take this opportunity to humanize the problem for those who have no stake in this fight.
I have Rheumatoid Arthritis. Many of you are probably saying to yourself “Arthritis? That’s nothing.” Wrong. Rheumatoid Arthritis is an auto-immune disease which affects millions. My body is quite literally eating my own joints, destroying them bit by bit as it would any perceived threat. Since I have been suffering from the disease since the age of nine, I have serious joint destruction and have had both hips replaced. I am 34 years old now, and again I am facing joint replacement. Both shoulders have to go within the year. In order to pay for this and more, my main source of medical insurance is Medicare. I rely on the service to provide me with a lifeline to the medicine and procedures I need in order to live any semblance of a normal life.
Thanks to Katie Stewart Vents About RA for originally sharing this very important post on her blog!
I was explaining to a friend who does not have RA how “excited” I was to have pain in my body that was not from RA – that it was somehow a semblance of being “normal” again.
My cane is copper, metallic, sturdy, with a neatly squared-off handle. Only modern compared to grandma’s wooden relic for her osteoarthritis. My sister and I spent many afternoons with her cane, pretending to knock Great Uncle Hiram in the knees. Grandma hooted. In my 7-year-old world, she was tied to the cane. It was part of her. Grandma, the cane, the arthritis.
Rheumatoid Arthritis Guy’s “60-Second Guide To Rheumatoid Arthritis” is now available in Spanish, for the convenience of all Spanish-speaking superheroes!
I’d love to have this guide available in multiple languages so that it is accessible to more people who live in non-English speaking countries. If you’re interested in helping translate this guide to another language, please do let me know!
The new Spanish 60-Second Guide can be viewed online at: http://www.rheumatoidarthritisguy.com/60-second-guide-to-ra/es/.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
- Accepting Chronic Pain: Is it Necessary?March 27, 2015 - 9:09 am
- Harvard Gazette: A Journey Into IllnessJanuary 12, 2015 - 4:19 pm
- Health.com: 11 Famous People With RAOctober 1, 2014 - 9:50 am
- Arthritis Broadcast Network: Spotlight On Arthritis SuperheroesSeptember 10, 2014 - 7:34 pm
- The New York Times: Actress, Artist, Sometimes Both At OnceMay 20, 2014 - 10:29 am