Sunday, November 25, 2012

Day 25: Patient advocacy, always evolving #NHBPM

How have your goals as a patient/advocate/person evolved?

Yesh, loaded question alert!

Since I started really taking charge of my health, I have turned from being someone uneducated about my illness and medications into someone that has failed medications and changed doctors numerous times. I have gone from being someone who would sigh and toss fundraising pamphlets from the Arthritis Foundation in the trash to someone who participates in walks and has even spoken at an AF event.

At first, it was about me and my pains - frustration that no one knew what I went through and trying to find a way to share that with others. Now it's about the kids I know with any kinds of arthritis - it's about making sure people know about Jordan's infusions or Parker's hospitalizations or Mia's final dose of prednisone. I grew up in a world where the kids I was actually able to interact with made fun of me for my weight or because I was a 'nerd' or 'weird.' These kids deserve more, they deserve better.

I've also learned I'm not alone in many ways. Obviously, I'm not alone in my specific disease (hooray?). I'm not alone in being quirky or being looked down on for it. But I'm also not alone in the fight to raise awareness and to help others, especially the kids - that, to me, is worth everything.

These kids - they're worth everything:

Parker being an awesome M&M (read more here)

Mia is so freaking cute it's unbelievable (read more here)

There are other kids that could be mentioned and the list could go on for a while. Parker and Mia both have systemic JIA/Still's and Jordan has another kind of JIA and also uveitis (which is finally cleared up for now after like 6 years! YES!). When I think about fighting for awareness and change now, I think of these sweet kids - their hospitalizations, shots, infusions, surgeries, and more. Who could ask for better reasons to fight?


  1. The perfect post with 3 perfectly beautiful kids :)

    1. I hope you don't mind me stealing one of Mia's pics :) She is so cute!!