Thursday, March 8, 2012

World Kidney Day : FSGS Sucks

I'm sitting here writing this blog post from the 4th floor of the Russel Senate Office Building. I have a few minutes before my 2:00appointment with Sen. Dan Coates' legislative aid, so I thought I'd take a few minutes to collect my thoughts.
This day mattered. It mattered to me, and even though the timing was less than ideal, I want to thank my husband for understanding how important it was to me to be here and advocate for me and others like me.
I've learned so much in the last two days. Not only about kidney advocacy, but also the political process. DC is a stunningly beautiful city (doesnt hurt that its nearly 70 degrees and sunny :) and I look forward to coming back here one day with Joacim and Izzy.
Whether or not we change anyone's mind today, at least I know I educated one person about what it's like living with CKD. It's so hard to read people here in this big political machine....watching all of the moving parts has been fascinating, and the number of navy blue suits is mind-boggling! I even chatted with a Capitol Police officer while I was standing in front of it, trying not to blow away :)
Okay...few hours later now. I'm sitting on the plane, ready to fly home, and I can't begin to describe how tired I am, or how swollen I am. But it was worth it. The kidney community is small but incredibly welcoming...we're all have a story to tell. I shared a cab to the airport with 2 kidney donors...one was an altruistic donor and the other was donating her kidney to her dad 7 DAYS FROM TODAY! How amazing is that? I also met another FSGS sufferer...she's on her 2nd transplant right now and is doing really well. I saw a fistula for the first time, and it wasn't nearly as scary as the ones I'd seen on You Tube (granted, she had it done while she was in France and they did it cosmetically on the underside of her forearm). These people I'll stay in contact with, and I can't wait to share some pictures from the day. :)

Tuesday, March 6, 2012

It's been awhile / Advocacy Day / Celebrity Apprentice : FSGS Sucks

Can't believe it was the middle of February when I posted the last time.  There was just no way I could keep up with everything, what with the relocation and all.  We're up here in Minnesota now, not completely settled yet, but closer than we were.

What I AM excited about is my trip to Washington DC today for the National Kidney Foundation's Advocacy Day!!!  Sadly, I won't arrive until late tonight because there's a group of other advocates meeting for dinner and a chat.  No worries...I'll meet them all on Wednesday.  I can't wait to share my learnings and adventures with everyone who reads this blog.

Also, I wanted to share something else with you.  Real Housewife of New Jersey star, Teresa Giudice, is helping us bring some MUCH needed attention to FSGS and Nephrotic Syndrome through her appearance on this season's "The Celebrity Apprentice".  Please watch the following PSA...the kids are so cute!!!

http://www.youtube.com/watch?v=iHXy5gDshOU&feature=youtu.be

Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...