Monday, November 7, 2011

I'm jinxed : FSGS sucks

Today was another day of EXTREME sleepiness.  I slept well...just not enough.  It's seriously unrealistic to think that I'll ever get 10 hours of sleep a day, but that's about what I need at this point to feel "rested".

This weekend was spent constantly on the go.  Early Saturday morning, my Grandma's husband passed away.  It wasn't unexpected, but that doesn't make it any easier.  I went into more of the details on my other blog, so I won't indulge here...needless to say I didn't get much rest this weekend.

And today, I was email my friend, Sarah, telling her that my swelling was good and under control.  Well, it's not anymore.  I felt my ankles getting tighter as the day wore on, and by the time I got home, it was back to the old swelling.  My feet still look pretty good, so I'm hoping I can salvage it.  I had been trying to wean myself off of the metolazone, but that's clearly a stupid idea at this point.  I freaking HATE HATE HATE HATE HATE how tight everything feels right now.  Hell, even my belly started swelling again.  Now, it's hard to tell if that's from the water weight gain again OR the colitis, which appears to be rearing it's ugly head again.  All of this, combined with the never-ending period (after the LEEP) and I am a BALL OF FRIGGIN' LAUGHS.

I had an appointment with my dietician on Friday to go over some of my questions about diet and nutritional needs.  I also wanted to talk to her about going vegetarian and how I could supplement my protein needs, and we came up with some good ideas.  The biggest focus for me right now is the low salt.  I'm supposed to be striving for between 1500-2000mg.  That doesn't sound hard, but it's SOOOOOOO hard for me.  I love...love....LOVE salt.  But I'm serious about this...I can't take this water weight, and if this works, it'll be worth it.  So I made a low-sodium soup tonight that I can eat off of the rest of the day, made some oatmeal this morning (salt-free), and cut up a bunch of veggies and stuff for sandwiches later in the week.  I found no-salt peanut butter, and low-sodium broth (ok, extremely low-sodium...around 140mg per serving, and the normal amount is 490mg...granted, it tastes like flavored water, but my taste buds will eventually get used to it).

I'm PRAYING that I wake up tomorrow and the skin on my legs is loose again....keep your fingers crossed for me!



5 comments:

  1. Well, crap! Did you happen to eat a pile of salty goodness yesterday? I hate the unpredictability of swelling!

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  2. Ha! I WISH I could attribute it to that, but I've cheated WAYYY worse before with no effect :) sadly, I think it's just fate...or my body/nature/karma's way of messin' with me,

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  3. I'm not sure quite what you define as fun, but the three symptoms you described are the opposite in my book. :) (Sorry, in reality, because that all sucks.)

    Fingers crossed for fine-fingers (and toes, ankles and bellies, too) tomorrow!

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  4. i feel your pain. i love salt too , but it doesn't love me. i think eventually you can wean off the metalzone.... i still take it as a "booster" for when i start swelling a lot. a good week its only maybe once.....thats after taking it every day for awhile. i was a vegetarian for 10 yrs. i still eat very little meat...i do a lot of meatless meals...beans :) one thing, if your worried about salt in beans... try the bagged ones. i try and use those more often. hope you get the swelling under control. i know how unbearable it can be.

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  5. Jenn, I continue to reference you when my daughter gets depressed about what is going on. Right now we are in the hospital because she developed peritonitis and cellulitis. Because of all of the fluids they had to give her her ankles and feet swelled. We talked about the picture you posted not too long ago. Again, it helps her to know she is not alone. This sucky disease makes her so sad. She has been too sick to go to school, do stuff with friends, and enjoy life. Blah. A new kidney biopsy is scheduled for Monday. Blah, again.
    Thanks for your blog,
    Kathy

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