Today has been a tough day : FSGS Sucks

Actually, this entire week has been hell.  Yup...that about sums it up.   And if you don't like to read things where people are complaining about their lives, then you might want to skip this particular post, because that's all I'm gonna do.

It wasn't as if I wasn't fully aware that this week would suck, but that doesn't really make it any better.  We move 2 weeks from yesterday, and as such, there are still a LOT of little details to wrap up.  And this week, I've been in software training on the north side of town all day, every day.  It's been a tough training class too, and it's requiring a  lot of my focus, but so is everything else.

Every single second that I've been on break has been spent on the phone trying to tie up some loose end.  I've been on the phone with our new mortgage company, our moving company, our relocation company, our realtor, our builder, my general practitioner, my nephrologist, my clinical trial coordinator, Mayo clinic, The Nephcure Foundation, The National Kidney Foundation, my new insurance agent and my bank.  I was on the phone so much yesterday that, by noon, my batter was down to 20%.  It's been......consuming.

And there's no internet on our computers because The Embassy Suites is too cheap to let us have it for free, which means I'm doing all of this internet searching for phone numbers, addresses/directions, email attachments.  I tried to send a copy of my labs to Mayo clinic today because I had them in the cloud (on Dropbox) but I couldn't attach a file from there using my mobile email (arg).

I had so much anxiety today that I hurried up and worked a few labs ahead so I could leave early.  I wanted to hit up all of my doctor's offices and sign medical release forms so they could send my files to Mayo.  While I was near St. Francis, I stopped in to see my friend who just had her baby at 12:05am.  This has been one of the few bright spots in my week.  Her little boy is absolutely delicious.  I was able to sit with her and chat while her husband left to get their other son from daycare to bring him back to the hospital.  We got to catch up and I even get to take the new baby and their family photos next week as a gift to them!!!  So excited about that!

Sadly, I didn't realize how much that visit would affect me tonight.  I sat there at dinner, spacing out, and just started crying.  Crying because that little baby smelled so good...he was so tiny.  I forgot how soft newborn baby hair and skin is.  And those little white dots on their nose right after their born...and the incredibly tiny fingernails.  I guess the last time I walked through those doors at the hospital I was pushing a baby out, never knowing that was probably the last time.  I still think a part of me....wait, I KNOW a part of me, still nurtures the hope that maybe, just MAYBE, I'll be lucky enough to get to experience pregnancy again.  But tonight, I was overcome by sadness at the thought that maybe I won't be that lucky.  It's hard, and feels very unfair right now.

I'm a chosen one!!!! : FSGS Sucks

A few weeks ago, I completed an application to take part in the National Kidney Foundation's advocacy program.  The timing seriously couldn't be worse, considering my move and everything, but I feel so passionately about educating people that I couldn't pass up the chance, and I'm so glad I didn't because I got off the phone tonight with the NKF and I'M GOING!!!!  I feel so very honored as only 20 people were selected!!!

I'll fly out on March 7th, and we'll be doing a training session in the afternoon.  There will be an event that evening, and then spending the next day on the hill talking to members of Congress, educating them about NKF initiatives (including extended Medicare coverage for immuno-suppressants for transplant patients) as well as just educating them about kidney disease.  And then I'll fly home the evening of March 8th, which is World Kidney Day.

I'm so excited.  I can't WAIT to share this experience with you!!!!!