telling you your lupie business

Well this was my 4th year to suit up and attend the Lupus Foundation of America's Advocacy Days on the hill in DC. Last week we had meetings with all my representatives from the big commonwealth of VA. I didn't get to meet another Senator and I severely missed little Tommy P, but I found my voice....

As many of you know, I have a big damn mouth but when at LFA events I tend to be the tall quiet one in the back. My story is not nearly as traumatic or sad or meaningful as all my friends. I was diagnosed early, I can work a 40 hour job, I have health care, and therefore I keep my mouth shut. I don't know if I can accurately articulate this to those who don't experience it daily--the degree of disaster that this disease takes on the lives of the people affected, and how much I am abnormal. I was just emailing with one of my more sane support group friends who was THRILLED to get her drug list down to 8 prescription a day, and seriously she is what I would call high-functioning.

This year on the hill (for the first time ever) I felt strong enough to talk more, to share, and to give a 20-minute "tell-you-your-business" speech. And luckily, it went well. I'll be the first to admit that it might just be that my expectations have changed, in that it didn't bother me when those crazy women go off on their stories or when the foundation can't get their business together. I articulated our purpose and I didn't get as upset when the staffers replied "we are in a budget short fall" or "we don't support that."

Last week, I got a little crazy tweeting up a storm with the LFA stuff. Also, if you want to write any of your representatives, using an LFA form letter, you can do so here. Tell them someone special to you was on the hill (for big block of cheese day) last week, and you too support the cause even though you couldn't be there.

xoxoxox