Friday, November 21, 2014

The Joint Decisions Empowerment Summit*

Last weekend I kissed my babies goodbye, wished APL luck, and flew to Boston for the Joint Decisions Empowerment Summit.* The summit was an amazing opportunity to meet other RA bloggers face-to-face, including three other members of my team (Leslie, Angela, and Carla). Many of these people are the authors of blogs that I have been following for years, so it felt sort of like a chance to meet some of my favorite celebrities! I got to meet:
  • Rheumatoid Arthritis Guy - one of the first RA bloggers I discovered when I started my own blogging journey over six years ago. A real superhero come to life!
  • Wren of Rheumablog - who, in addition to her own journey with RA, has been following my blog and leaving me loving and supportive comments for years. So amazing to meet her in person!
  • Spoonless Momma - another mama battling to have her family despite living with RA.
  • Leslie from Getting Closer to Myself - diagnosed with lupus and RA while working towards her PhD, who now advocates for students living with autoimmune conditions
  • Angela from Inflamed: Living with Rheumatoid Arthritis - who was diagnosed with RA just out of high school but hasn't let RA stop her from pursuing her passions 
  • Carla from Carla's Corner - who was actually diagnosed the very same month I was, but has already lived through hip, shoulder, and knee replacement surgeries
  • Britt from The Hurt Blogger - who has been living with arthritis since she was a child and whose online advocacy efforts have been very inspiring to me
  • Dina the Titanium Triathlete - a triathlete who doesn't let RA or her two total hip replacements stop her
  • Amanda of All Flared Up - diagnosed with RA four years ago but not letting it change her outlook on life
  • Cathy of The Life And Adventures of Cateepoo - another mama working to make the best life for her kids despite her RA
On the other side of the coin, it was totally bizarre to meet "strangers" who already knew so many intimate details about my life! Of course I know that when I blog I am purposely sharing the details of my life with the world, and I do often email or talk on Facebook with people who read my blog, but I haven't had very many opportunities to meet these folks in person. So it was strange - but also kind of wonderful - to meet people who I know understand what I am going through. 

The first day of the Summit we shared our patient stories, and even though I was familiar with many of them through their blogs it was actually very powerful to hear these stories in person. The level of understanding and determination shared between everyone in the room was very uplifting and inspiring for me. 

The second day of the Summit we were able to give some feedback about Joint Decisions, a webinar which is the collaborative effort of CreakyJoints and Janssen Biotech. Although these live webinars (and the subsequent recordings) are already great resources for people living with RA, it was great to be able to provide some feedback to help improve the series going forward. There's still one more webinar scheduled for January 14th called "Right Track RA: Helpful Tips for Continued Success in the New Year." (Register here if you are interested in joining!)

Though it was an extremely busy weekend of traveling (a week later I feel like I am still recovering!) it was a very positive and inspiring experience for me and I'm very glad I got to be a part of it. And though it was also a really nice break from my babies, I sure was happy to see all my boys when I got home!

*Janssen Biotech paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.

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