My first time... Once I realized that WEGO Health did not want a personalized detailed description of my first "encounter", I started to think about what first time would I share for the Health Activist Writer's Month Challenge. I thought it should have something to do with Lupus. After thinking about it, I decided to share my "first time" as an advocate for Lupus Research in Washington, D.C. The first time I went to Capitol Hill Advocacy Day changed my life.
After living with Lupus for 25 years, I was finally using my voice to speak up for patients and families whose lives are affected by Lupus every day. The first meeting of the day was with the Health Legislative Assistant for California Senator Barbara Boxer. I was so excited; as I shot my introduction to the YouTube video, I was practically jumping up and down. I experienced the power and joy of what it was to have someone listen. As an American, I was proud. As I told my story to staffers and a few members of Congress, I felt that I truly was making a difference.
I learned that using my voice and telling my story was empowering and helpful to myself and others. When I returned back to California after my trip to Capitol Hill, I did not stop advocating. I continue to share my story and support the Lupus community. I discovered that my story was not unique. There are too many patients suffering with Lupus. My journey to Washington was the first step on my path. The path became a road -- the road to wellness and thriving with Lupus. My first time was not my last. I hope that one day you feel the power that comes from speaking about issues that concern you with your "representatives"; you don't even have to travel to Capitol Hill to do so. Every member of Congress has a local district office. Call them; ask to speak to the Health Legislative Aide (Assistant). Be nice, but be firm and speak your mind. You have a vote and your voice matters.
from left: Dory Neilinger, me (Amanda; aka "LA Lupus Lady"), California Senator Barbara Boxer and Linda David.
I have been calling the local and D.C. offices of my Senators and Congresswoman once a week for the past month because there is a new Caucus on the Hill and I want my representatives to know how the voters feel. I want my Senators Barbara Boxer http://boxer.senate.gov/ and Dianne Feinstein http://www.feinstein.senate.gov/public/ ,as well as Congresswoman Karen Bass http://karenbass.house.gov/ ,to join and support the Congressional Lupus Caucus https://www.facebook.com/CongressionalLupusCaucus. My advocacy for Lupus and Lupus Research will never end...until there is a cure.
Here is the YouTube video I made of my first Capitol Hill Advocacy Day. http://youtu.be/IzGc5fInDHA