Rheumatoid Awareness Day [Feb. 2nd] is once again upon us, and in keeping with the theme of today I’d like to share what my experience with RD/RA has been like. Fair warning this may not be the heartwarming tale you are hoping for.
A little over 5 years ago, 17 year old me sat nervously in a rheumatologists office. My mother knew, I’m still not sure how, but she did. I had no idea. The rheumatologist came in and addressed both my mother and I solemnly stating that I had moderate to severe rheumatoid arthritis that required immediate treatment. I looked down at my hands, swollen beyond recognition and curled in on themselves. The hands I used for my art, completely unusable. I asked how common it was to be diagnosed at my age, the answer confirmed my suspicions that I was always, the exception. No one got sick at my age, I was an anomaly, an outlier, ‘special’. We agreed on an aggressive treatment using injectable Methotrexate, Prednisone, NSAIDs, pain meds, the whole shebang. Some of what they gave me helped, some just seemed to piss it off. Much of my senior year is a blur of DMARDs, Biologics, NSAIDs, pain, so much pain, depression, anxiety, and uncertainty. This was not supposed to happen, I was supposed to go to college anywhere I wanted, supposed to go be something, people my age didn’t get sick like this right? Right? Wrong. I managed to graduate despite missing 1/3 of my senior year and [poorly] teaching myself from home. I considered my options and in an act of reckless optimism, decided college was not too far fetched despite the fact that I was in iffy shape at best. Armed with a mini-pharmacy and encouragement from my teachers and family I left for a school 4 hours from my hometown.
College was tricky with chronic illness but not impossible, I had accommodations, an unwillingness to fail, and amazingly supportive parents. From my Freshman to Junior year I relied heavily on pain medication, ER trips in the middle of the night, and the kindness of others. Some days were better than others and not all of this time was bad. I met my best friends, learned how to be a person again, I even met my now husband. I went to Mayo clinic, I saw there were others my age just as broken. Knowing there were others gave me hope, if they could do it so could I. I spent that summer at the Mayo Clinic Pain Rehabilitation Center and have since been without any pain medication. It has in no way been easy to do this especially given how active my RD/RA had become. I am still in school and when it is all said and done will have been in college for 6 years. Not great, but pretty good given my situation.
Rheumatoid arthritis/disease took from me, it wasn’t as advertised and simply arthritis. I demand a refund. My RA/RD caused secondary sjogren’s disease, carpal tunnel, peripheral neuropathy in my feet, and joint issues ranging from aches and pains to dislocations. I have had to have major foot surgery, steroid injections in my shoulders and feet, and double knee surgery. More operations are on the horizon for me and I sleep in all sorts of braces. This disease took too much from me this is true, however I also gained something. Strength. My illness gave me a sense of resiliency few people my age, or any age are able to develop. For this I will always be grateful, it has helped me survive in a world that is at times unkind.
I am happy, I am strong, I am determined, I get depressed, I fail, I am not a super star. These things are okay, what matters is that I continue moving forward.
What’s important to understand is that Rheumatoid Disease is not just arthritis. It is vascular damage, secondary illnesses, fevers, joint issues, fatigue, widespread inflammation, muscle weakness, lifespan reduction, and pain. It is time to bring this illness out of the shadows and find a cure. For more information visit the Rheumatoid Patient Foundation, an organization which I am ever grateful exists.