Thursday, April 26, 2012

It's been rough lately : FSGS Sucks

I feel myself sinking a bit.  The unpredictability of this disease is sometimes paralyzing.  I've got a concert to go to tomorrow night (Florence + The Machine woooohoooo!) and instead of worried about a designated driver, I'm worried about whether I'm too swollen to fit in a the new shirt I have, and what shoes I can stand up in for that duration.  I hope I can have a really great physical day...let loose at the concert (no drinking, though....that's totally unnecessary with Florence) and dance like there's no one watching.

I know I'm fortunate....please don't think I take any of that for granted.  I met (physically ;) a new friend local to the area, and even she said that if she didn't know better, she wouldn't know I was sick.  I'll take that as a compliment and run with it, so thanks Julie :)

I can still get up in the morning (although it seems to be getting harder and harder because the exhaustion never ends).  I can mostly cram my fat feet in my shoes (no more bones :( ).  I have a foot rest so it doesn't get any worse during the day.

But I, like a lot of women I'm imagining, do a little body inspection before we hit the shower/bath.  And I just HATE what I see.  I see a swollen belly....thighs that are uncomfortably large...strange tiny little dark bruises from me bumping into things....bruises all over my thighs from the acthar injections.  Hell, I woke up yesterday with what look like claw marks on the top of my left's all nasty and swollen (even more than normal)..hurts like hell..should make standing in shoes tomorrow a blast.  And it'll take weeks to go away.  I STILL have a bruise on my arm from when I got a blood draw 2 weeks ago.  I'm feeling utterly broken today.

I know I gotta snap outta this before it gets worse in my head.  I got my urine tests results back from Mayo yesterday and they're not good.  If I'm reading them right (and there's no telling with 9 pages of results), my protein has increased from 10.1g to 15.6g.  That.  Blows.  I've got a lot of questions for Dr. Fervenza when I see him at Mayo Clinic on Monday, and I can't wait for some clarity.

I still take my salt baths every other day, so at least that's been a guaranteed 20 minutes of alone-time.  Tonight...I just laid reading, no watching netflix....just laid there and rested.

And I wanna do yoga...or pilates.  Something to make me feel  graceful and beautiful....maybe this weekend..


  1. I'm so sorry your ankles have gone back on vacation. And I'm sorry you're having a hard time. It really does all suck. All of it. Saying a little prayer that you feel great for the concert & can rock it & not think about your kidneys for even one second of it.

  2. (((hugs))) you always looked fantastic in Indy! And hell, I say the same thing to the mirror reflection - and I dont even have a chronic disease! Go rock out to Flo and enjoy!

  3. Rough is not strong enough of a word, my friend. It's the whole Catch 22 thing - if you exercise you will feel better, but it hurts too much to exercise and takes SO much work. I'm sorry you're in this place right now. Glad you have an appointment on Monday - I go see my guy on Thursday and am looking forward to new meds and maybe some more insight on how things are going inside.

    Have fun at your concert!!


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