Tuesday, June 27, 2017

My 9th RA Anniversary

I'm never quite sure how it's possible, but somehow it's that time of year again! The time when I realize that yet another year has gone by since I was first diagnosed with RA in June 2008. I have now been living with RA for nine years. I'm getting to the point where I've been living with RA for so long, that my life prior to diagnosis just seems like some sort of distant memory of my youth. 

I've come quite a long way in the past nine years. From not even being engaged when I was first diagnosed to just celebrating my sixth wedding anniversary. From being terrified about how I could possible be a mother with RA to my oldest son just turning five and my little dude already about to turn three at the end of July!

The challenges that I have faced as a mom living with RA have sparked my passion in helping generate resources and support for other moms living with chronic illnesses - so no one will have to feel as alone and unsupported as I did when I first decided to become a mom. Some of my favorite articles that I wrote this year continue my focus on pregnancy and parenthood with chronic illness:
My Mamas Facing Forward Facebook community (for moms and moms-to-be living with chronic illness) has grown to include more than 500 women from all around the world. I'm really excited to see this group continue to grow - and I've got plans in the works for additional resources for my mamas so please stay tuned!!  

Though writing has always been my happy place, this year I also stepped outside of my comfort zone to participate in several videos interviews - to put a real face on these issues. I did a series of interviews promoting awareness for Patient's Rising as well as a couple of videos for RheumatoidArthritis.net (misconceptions about living with RA and managing RA pain). I hope to continue getting more comfortable talking onscreen, as it offers another venue for spreading awareness and connecting to others. 

My advocacy work has been going really well and growing daily. This year I did a TON of traveling - to conferences, summits, meetings, advisory boards, presentations, and more! Since last June I've been to:
  • Phoenix, AZ (Arthritis Foundation Juvenile Arthritis Conference)
  • Philadelphia, PA (Arthritis Foundation Juvenile Arthritis Conference)
  • Philadelphia, PA (Joint Decisions Empowerment Summit)
  • Cherry Hill, NJ (PMRG Institute Research RoundTable)
  • Denver, CO (Arthritis Foundation Conference of Champions)
  • Washington, D.C. (American College of Rheumatology Annual Meeting)
  • San Diego, CA (Janssen Immunology R&D Team Meeting) 
  • Denver, CO (testimony in Colorado Congress on SB 17-203)
  • Dallas, TX (Lilly Patient Steering Advisory Board)
  • Washington, D.C. (Arthritis Foundation Strategy & Impact Committee Meeting and Advocacy Summit)
  • Longmont, CO (AstraZeneca Staff Meeting)
  • Philadelphia, PA (Health Union Connexcion)
  • New York, NY (Pfizer RA Patient Global Advisory Board)
  • Dallas, TX (Roche-Genetech Patient Advisory Board)
DUDE! Just looking at that list has me exhausted!! All of those events were very exciting and I learned so much from being involved - but I do have a goal to have a more reasonable travel schedule in the upcoming year!! (Check in next year to see if I was successful haha!)

In addition to the traveling I did for my advocacy work, I also rode my bike from San Francisco to Los Angeles in the Arthritis Foundation's California Coast Classic! I rode every single mile of the first six days and made it all the way to the 400-mile mark before riding a bit in the sag van. In the end I rode 467 miles over eight days, and did more than 25,000 feet of climbing. Many, many thanks to everyone who supported me on that crazy endeavor! Needless to say I'm not planning to ride again this year - but maybe someday! 

And, in what seems like an accomplishment by a different person from another lifetime, this year I also kept my environmental interests alive by co-authoring a textbook on international environmental law. After being diagnosed in the middle of law/graduate school, RA did force me to choose between starting the career I had always envisioned and having the family I knew I wanted - and it's obvious which one I chose! But it's nice to have a physical reminder in my hands that I am more than my RA, as well as a potential pathway back into the subject if I should choose that direction once my kids are older. 

It has certainly been a crazy busy year!! Going forward I hope to continue watching my family grow and finding ways to support people - especially mamas! - who are living with arthritis and other chronic conditions. 

From This Point. Forward.

1 comment:

Unknown said...

Wow! You have placed your energy in very productive places! I've always had a heart for young moms, as I was diagnosed after our son was off to college. One of my first thoughts was "what if I needed to care for a young child?". May your efforts continue to inspire the facing forward mantra! Thanks for all you do!