Tuesday, June 5, 2012

NKF and Peeeeeeee : FSGS Sucks

Last night, I had the chance to meet with Kristin and Breanne from the National Kidney Foundation serving Minnesota, the Dakotas and Iowa.  I was told by Troy Zimmerman from the NKF (who I met in Washington, DC during Advocacy Day) that they have a very active chapter here, so I was excited for the opportunity to be involved.  Nephcure doesn't have a chapter here yet, and I don't quite have the time to start one up, but I still want to be involved in any way possible, so I sent them a message on Facebook and they were kind enough to come out and meet me last night,.

We talked about all of the activities that they have, and the volunteer opportunities, so I'm really excited to be a part of something already well-established.  Hopefully I can volunteer some of my photography services, as well as meet new people with all types of kidney diseases (not just FSGS), donors, nephrologists...you name it.  So THAT was very exciting! Thanks ladies!

And today, I'm working from home (although taking a tiny little break right now to write this) so I can do a 24-hr urine collection.  I have an appointment at Mayo at 8:00am tomorrow (fasting, no less), and I don't have my friend, Caroline, with me to keep me company, so it's going to be a boring, hungry drive down there, but it's always worth it to see Dr. Fervenza.  I'm not sure if anything is working, which is why I'm so anxious about the labs.  I had a glucose test done last week and I'm borderline on that, but my A1C is just fine, so we'll keep an eye on it,.

I've been feeling great.  Still very little swelling...it started a little yesterday, but I completely attribute that to sitting at a desk all day.  The more I move, the better it is, so a desk job feels like a handicap sentence at this point.  I propped my legs up last night, and all is well again today.  I've even been able to sport some dresses and shoes that I haven't worn in over a year, so I'm still riding the top of this wave.  Keep your fingers crossed for me!!

2 comments:

  1. I just want to say thanks for taking some time to share your story. At times it really inspires me. I think of everyone out there that is sick and I realize that Life is good and I learn to appreciate what I have. I can related with you so well because I feel that I've been pretty much through the same. Just remember how lucky you are to have a family a home and a job and never ever give up. God Bless. and I do pray so that you get better soon. Please continue to share all the thoughts and articles. :)

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