According to the experts…Rheumatoid arthritis (RA) affects about 1.3 million people in the United States and pops up typically between the ages of 30-60, with women accounting for three times the number of men living with the disease.
Hmmm. Ages 30-60 you say? Really? How about 19?
Since it is World Arthritis Day, I thought it would be the perfect time for a virtual coming out party and the opportunity to share a personal story with all of you Full Spectrum Blog readers!
So here’s my tale (the cliff notes version):
- 2000 – It’s genetic. My mom was diagnosed with a combination of RA and Lupus.
- Early 2006 – I started exhibiting symptoms indicative of RA.
- Summer 2006 – (Age 19) Diagnosed with RA - After a slew of diagnostic procedures, including antinuclear antibody (ANA) and rheumatoid factor (RF) testing, I was diagnosed with RA and the genetic indicator for Lupus. Funny enough (or not), all of my tests came back negative and to this day, nearly six years later, my ANA and RF are still negative. But due to family history, the diagnosis was solidified.
- 2006-2010 – Post Diagnosis & Treatment - I changed my diet to exclude nightshades, began taking NSAIDs and Plaquenil (hydroxychloroquine), and eventually got to a place where I effectively managed my symptoms and disease on the same dosage. For almost four years, I led an active lifestyle, including multiple snowboarding adventures, three years as a choreographer in a dance company and a trip around the world.
- 2010 – 2011 – The Flare Up – Common in RA patients, sometimes the drugs you’re taking don’t work anymore. In the summer of 2010, we had to change up my treatment to something more drastic. So the docs brought out the big guns: steroids to control the pain and prevent joint damage, along with methotrexate, a low-dose chemotherapy.
- 2011 – Good news, the drug cocktail saved my joints! Bad news, early-stage hair graying, sunken eyes and every woman’s nightmare…severe weight gain from steroids. By the end of a whole year on weekly doses of subcutaneous methotrexate and other drug cocktails to counteract side effects, I had about enough.
- 2011 - Taking RA by the Horns – To the consternation of my rheumatologist, I decided to take myself off of all medications and make a personal change. I changed my lifestyle yet again: I made a conscious effort to join a gym, started eating healthier and began acupuncture treatments.
- 2012 & Beyond - It is a process everyday to deal with this debilitating disease emotionally, physically and logically. Some days are better than others, but the silver lining is that after six years, I am completely off all medications.
As they say, perspective is everything. Without having dealt with a disease of my own, I don’t think that I would have the passion or intuition about the work that I do now on a daily basis, advocating for patients and for innovative treatments being developed for incurable diseases. So today, I am advocating for advocacy’s sake to share that even though I’m a young person with an “old” disease, you always have options. You just have to be brave enough to consider the alternative.
Since I shared my story…what about you all? Any thoughts or experiences you would like to share, post below! Or shoot me an email if you’d like to keep it off the grid at firstname.lastname@example.org.
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