Friday, June 3, 2011

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.

1 comment:

  1. I think this is one of the hardest things with being prednisone resistant and dealing with this disease. It's very hard and frustrating to not being able to do what you need/want to do due to the swelling. Sux having to be laid up when you'd rather be active. Just wait until the swelling is mostly under control but the energy level drops. That's what I'm dealing with at the moment. The swelling isn't horrible (still there) but I have no energy to do anything. Of course, it doesn't help that I went and broke my foot and can't do anything anyways. Grrrr!

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