West Hartford, Connecticut, United States – for now!
How long have you lived with RA?
Almost 4 years, my RA came on very suddenly, in May 2008, after an international move and a minor lower back injury. My health had been phenomenal until that point.
What advice would you give to someone who has just been diagnosed with RA?
My advice would be to have as much physical fun as you can, while you can. Travel extensively while you can. Do your research, and learn about the science of RA. Teach your friends and family about the realities of RA. Get very familiar with your insurance coverage, and start saving money for a rainy day! And give up wheat!
Do you use any mobility aids?
My husband is invaluable- he does SO MUCH to help me! Ankle braces, wrist braces, wide toe-box shoes, electric blankets, stair rails, elevators instead of stairs neck wraps, daily hot baths, and even warm scarves help tremendously.
How has living with RA helped to improve your life?
Nope, not in the least! Well, it has made me more focused, more organized, more determined, and more stable in some ways. But it has dramatically curtailed my life full of adventures!
Do you have any visible signs of RA?
My body has changed quite a bit with my RA, almost thickening up. I’ve got nodules on my feet, ankles, and wrists. I had dramatic hair loss from the first 2 rounds of meds, vision loss, hearing loss, and my eyes go fire engine RED during a big flare-I have a limp that is getting very hard to hide!
Can you please describe some of your favorite coping strategies for living with RA?
LAUGHTER- I get it whenever I can! I sleep and rest whenever I can, and have learned to plan out my time in advance so that I can recover from my daily life. Reading other peoples blogs for the first 2 years helped tremendously- to see that I wasn’t alone, and that there are many forms of hope in spite of RA. Writing helps to release confusion, anger, sorrow and pain. Gardening has gotten me through some of the worst times, and just being outside on a regular basis gives me balance and strength. My wonderful dogs have helped more than I could ever describe.
Can you please describe your current medical (traditional and alternative) treatments?
Currently I am on the antibiotic protocol- Minocycline. I get weekly PT treatments, and use anti inflammatory daily. My diet is wheat free, mostly plant based, and I take a wide range of supplements. A recent emergency room visit left me with 5 prescriptions for pain pills, but I avoid them like the plague-In the past 3 years, I have tried MTX, Plaquinil, Prednisone, and was scheduled for Remicaide infusions 3 times, but got pneumonia 2x, that knocked the Remicaide option out for me- My Rheumy has consented to try the antibiotic protocol for 6 months, andif it doesn’t then we might try Orencia. So far, every form of treatment seems to help for a couple weeks, gets my hopes up for remission, and then the RA rears its ugly head again…each time a little bit stronger than before.
Is there anything else about yourself that you would like to share?
I’ve been extraordinarily lucky in my life, and have managed to fit 4 lifetimes into my 45 years- Despite this endless pain of RA, I am curious about what form my life will take in the next 2 years, 5 years, 10 years. Whatever happens, I tend to remain happy, curious and eager to experience life to its fullest, on the good days, and the bad.