Thursday, June 16, 2011

Sick sick sick sick sick : FSGS Sucks

So far this year, I've had one about of pneumonia, 2 sinus infections, and now bronchitis.  I swear, this sucks.  I feel like shit.  I lay around here feeling guilty because I can't play with Izzy, and because I'm not at work working on my project.  This guilt isn't getting me any healthier any faster either.

I'm tired of catching every single thing that comes my way, and getting a bad case of it.  The sinus infections were AWFUL!!!  This bronchitis is no picnic either...I wake up feeling awful...get about 4 or 5 hours where it's tolerable, and then start to get soooo tired right before I go home.  I tried to tough it out at work the previous 3 days, but I waved the white flag this morning.

I'm staying home tomorrow to try to get some rest and get better.  I'm going to try to work, unless I'm just totally out of it and then it's pointless.  I'd probably do more harm than good :)

Here's Izzy and me this morning...
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Tuesday, June 14, 2011

May 31 Clinical Trial (Week 0) : FSGS Sucks

I seriously can't believe that a whole week has gone, but better late than never, right?  Last Tuesday I "officially" started the drug part of the clinical trial.  I went back to Cincinnati so that they could teach me how to do the injections, and thankfully, my friend Rebecca came with me!
I'll admit, I was a bit over-confident in my whole ability to give myself a shot.  I sat and listened while the lovely Christine told me what I needed to do.  I took a DEEEEEP breath and pushed the needle in, and I thought that was going to be the worst part.  I was wrong.  The Humira BURNSLIKEAMOFOGOINGINANDTHEREISSOMUCHOFIT!!!!  It burns..fiercely, and there's a LOT of it...0.8ml, to be precise.  It doesn't seem like much, but it IS quite a bit, especially when it's going into the tissue right under my skin, and not in my muscle.  I got about 0.2ml in, started screaming and begged, literally begged, Christine to push it in.  After it was done I started getting dizzy and nauseous and super sweaty, so I laid down for a bit.  It wasn't a reaction to the drug, rather from the sheer pain of getting it injected.  Needless to say, I'm glad that I only have to do this every 2 weeks, and I'm even MORE glad that I work at a place like Lilly that has an Employee Health Services department on my site that will give me the injection.  Whew.

And, instead of Skyline Chili this time, I treated myself to one of my happy, although super-dangerous places, for me:

 I have to go back next Tuesday for lab work, and they're going to give me the injection there again.  I have to bring the vials of Humira, the bottle of Lipitor that's provided as part of the study, as well as a first morning urine sample.

I'm so happy that this has finally started.  I am holding no hope that it will do anything for me, but if it does, that would be AWESOME!!!

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&#...