The fact that my last post was written from a place of such anger and frustration has been bothering me for over a month now, but since then I’ve been so busy with advocacy and other projects I haven’t had time to write! I’ve also had a really tough month health-wise, which culminated in having insurance screw up my infusion last Friday. I’m counting down the days/hours/minutes until this Friday’s infusion, which gives me more than enough time for an update!
Two weeks after posting my last missive, a crew from Health Central came for three days to film my story with RA as part of their “Live Bold, Live Now” series. It was an amazing experience that I’ll write more on, but it was also exhausting. I put myself out there 100% in the hopes that the hardest parts of my story will resonate with others. It’s scheduled to go live on the site around the New Year, and I can’t think of a better way to start 2016!
Before I could recover fully from the experience, I was on a plane to New Orleans to attend the Arthritis Foundation’s Annual Meeting. I was there to deliver a workshop called “Telling Our Story to Advance Public Policy” with fellow advocate, Renee Cafaro. It was a profoundly moving experience – to share how much becoming an advocate has changed my life this past year. I also got to meet Matt Iseman, host of American Ninja Warrior, who shared his diagnosis story with a heartfelt hilarity that I can only aspire to emulate here!
Less than 48 hours after getting home from Nola, it was time to run this year’s Jingle Bell Run – my first one ever! Race day was cold and wet, and I spent almost an hour in bed that morning contemplating dropping out. Armed with KT Tape, Santa garb from my friend, Jen and an 11-minute mile buddy, I ran my best 5K of the year! Torn cartilage? What torn cartilage?!
Thanksgiving offered a brief respite from advocacy (but not pain), and the following week I had my final interview before being appointed to the Tufts Medical Center Patient and Family Advisory Council. My first meeting is January 21st, and I can’t wait to serve other patients through the Council’s goal of achieving the best patient outcomes through a closer, more mutual, shared relationship between health care professionals, patients, and families.
The very next day I testified before the Massachusetts’ Joint Committee on Public Health in support of two important bills that will repeal an unnecessary 2017 sunset on pharmaceutical co-pay programs that have benefited thousands of patients in Massachusetts. It was one of the scariest, most exhilarating things I’ve ever done, and I’m so honored that the Foundation continues to ask me to speak on behalf of millions of other Arthritis patients.
It’s been a month since Health Central packed up their cameras and went home, and I’m still very much recovering from the shoot and everything that’s come since! 2015 has been a truly life-changing year, and, as it draws to a close, I’m humbled by all of the opportunities I’ve been given to advocate for the Arthritis community. 2016 is going to be even bigger!