Pain in my ass : FSGS Sucks

This disease is a pain in my ass.  Not literally (although I probably couldn't have said that 2 weeks ago after the colonoscopy :)  HA!  I crack my self up!

No, this disease sucks because, at this point, there's no getting away from it.  As soon as I wake up and stretch, I feel the incredible pressure in my joints from the edema.  When I step out of bed it's hard to walk because the bottom of my feet are swollen.  I go to the bathroom for what seems like FOREVER (guess that's what 80mg of lasix will do).  And then I try to find some respectable clothes to wear to work.  This wasn't so hard before, but since there are only a few pairs (out of the 50 or so that I have) that actually fit.  It's almost (ALMOST) too bad that it's not winter, so I could wear my UGGs.

Then it's off to work, where my legs and feet get progressively bigger as the day goes on.  When I finally get home, I have to pry my shoes off because my feet have usually swollen around them.  At this point, I'm just tired of thinking about it.  I want to work out, or play with Izzy, or take her for a bike-ride.  The problem is that the ONLY thing that works right now to reduce the swelling is lying down with my feet elevated.  That's it. And it's soooo damn frustrating.

We're having a party for Izzy's birthday tomorrow, and there's a ton of stuff I need to do, but I need to lie down more.  Guess what won tonight?  Yep..lying down.  Which means that I have to get up early to run the errands I didn't get to tonight.  And I'm sure I'll get crap sleep because I'll wake up at least once, drenched in my own sweat (thank you happy pills) and have to get up and change clothes and pee some more.  I'm OVER it today.

I think I might sprout a leak : FSGS sucks

So today has been challenging. I can honestly say that the swelling has never been this bad. It's getting harder to move around after I've been sitting for any length of time. I miss my pretty pretty summer sandals. FSGS sucks.

From FSGS Sucks

From FSGS Sucks

From FSGS Sucks

Woohoo! I've been randomized!! : FSGS Sucks

I just got word today that I've been randomized for the clinical trial, and I got the Humira arm of the study!!!  This was certainly the one that I wanted as it seems like the best chance of reducing my proteinuria.  Wouldn't it be great if a Lilly drug helped me??  The irony of it all...

I also started working out again today.  Even though my feet and legs are ridiculously swollen, I figure I gotta give it a try.  I crammed my feet into my shoes and waited for a bit for the water to re-distribute.  I only did about 20 minutes on the elliptical, but it's a start.  I'm hoping that exercising will eventually help to lessen the swelling.    It can't hurt to try, right?