Sunday, May 13, 2012

Happy Mother's Day!!! : FSGS STILL Sucks

Damn.  Today was a great day.  Got to spend it with Izzy...she was a doll all day long.  I did get my lovely little kidney bean necklace too :)



I spent a little too much time in the car today running errands.  We went to Ikea to get a dining table and chairs, and then into Minneapolis to pick up a freezer that we bought off Craigslist 2 weeks ago.  The CSA is going to start delivering soon, so I need some space!  Once we got home, my husband and his good friend (who is visiting us from Sweden) put the table and chairs together while I put my feet up.

And even though it's Mother's Day, I still have FSGS, and I STILL have to get my meds together.  This is the Sunday night ritual now...I do this on the bathroom floor while Izzy takes a bath.  It forces me to do it, and keeps her occupied so she doesn't try to "help" :)


AND I gave myself my Acthar injection tonight.  This time it went much better.  I did it in my stomach this time, and I didn't get that awful feeling like last Wednesday.  Yay me!

I'm working from home tomorrow because I have a tacrolimus trough blood test at 11:30am.  I like to do these first thing in the morning, but this lab doesn't even open until 8:30 most mornings, so I'm gong to have to change the time I take it.  For anyone that's wondering what a tacrolimus trough test is...it's just a test to measure the lowest levels of tacrolimus in my blood.  I take tacrolimus 2 times a day, exactly 12 hours apart.  The point of this test is to see how much of the drug is still left in my system after 12 hours, which is why the lab time is important.  It's annoying, but a necessary evil.

Okay...thinking I better be gettin' to bed now.  Happy Mother's Day to all of the lovely mothers out there who do what they do, day in, day out, without fail.  It's the hardest job, but it's impossible to describe the feeling when you get when you see your kiddo learn something.  Absolutely amazing feeling....nighty night!

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&#...