Health Activist Writer’s Month Challenge 2013: Day 14

Day 14— April 14, 2013

Today’s Prompts:

• Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle.  Share your love.

1. Laura of Still’s Life. I’ve written about Laura before here on Chronic Curve. Laura’s blog was the first resource I found after receiving my own diagnosis of Still’s Disease. It wasn’t long after that I connected with Laura personally. She was an incredible patient advocate, one who always had the ability to laugh through the ugly parts of this disease— something she taught me how to do by example alone. Laura was as powerful in death as she was in life and a fighter until the very end. We love and miss her so very much.
   
   
2. Kelly of RA Warrior and Rheumatoid Patient Foundation. Before I had a solid diagnosis, I had a big hunch that I was dealing with some type of Autoimmune Arthritis (medical background here). Her website allowed me to take information to my surgeon (my first step into the world of being an empowered patient), who was the first person to suggest that Rheumatoid Arthritis might be the cause of my very swollen, painful hands. The information on that site guided me through my first months of treatment and allowed me to understand the medications and decisions my doctors were making surrounding my health. Her website was a huge tool in my becoming my own best advocate and for that (and her work for our community) there is no “thank you” that could ever suffice. I told Kelly recently she may just be superwoman. What she has accomplished despite her own disease is truly remarkable.
   
   
3. Kirsten of Not Standing Still’s Disease. Again, just an amazing woman. I’ve followed Kirsten’s blog for some time and what really resonates with me is her ability to tell it like it is. I make a point not to sugar coat things. I make a point to share the “ugly” parts of these diseases that people don’t want to read or hear about. Putting that out there for thousands of people to read can be terrifying—it’s not easy to be vulnerable in front of over 22k people— but Kirsten’s similar attitude is always confirmation, motivation, and inspiration for me to keep on doing what I’m doing. I admire her strength, her wit, her work for our community. Her friendship was the greatest gift Laura gave to me— it was Laura’s death that brought us together. 
   
   
4. Tiffany (and the whole team) at the International Autoimmune Arthritis Movement— IAAM has completely changed the Autoimmune Arthritis community. They welcomed me as a patient advocate and the network they create amongst organizations and patients through social media is extraordinary. IAAM has made incredible gains for awareness and funding, from their awareness hotline to World Autoimmune Arthritis Day, they are at the forefront of progress being made for patients like myself. Tiffany works so, so, so hard for the cause while battling Autoimmune Arthritis herself; her strength and ambition make her not just a superb health activist, but a role model for others.
   
   
5. Britt of Hurt Blogger. Britt started her blog right around the time when I started mine. Her snark and sense of humor while dealing with Arthur reminds me to keep the same perspective. You just have to laugh. And when you can’t laugh, you have to call Arthur out on being the Asshole that he(it? she?) is. If you are not aware, Britt is making huge waves in the ePatient world. She spoke at Stanford’s Medicine X Conference last year about her journey with Autoimmune Arthritis and how the concept of “Arthritis” is so very flawed. She is a huge inspiration for me and I do believe that I am a better advocate because of her and the other health advocates in my life that inspire me.

I’d be here all day if I wrote about all of the health activists that deserve huge love and thanks, there are just so many people who have enriched my journey and inspired me along the way. This community is amazing and the fact that it spans across so many different patients with all different diseases just makes it that much more incredible.

Who inspires you? What health activists did you include in your Day 14 post?