Monday, June 4, 2012

With amazing highs, comes amazing lows : FSGS Sucks

It's funny....I started writing this post last weekend (Memorial Day) and never got the chance to publish it, so it might be a little delayed, but the info is still pertinent.  Plus I wanted to remember this...

GREAT Memorial Day weekend with Izzy.  I had TONS of energy...even bought a pair of roller skates :)

And the swelling is GONE.  Not a little, most almost ALL OF IT.


But them, as typically happens, the bottom fell out.  I could NOT...DID NOT...sleep Monday night.  Maybe it was the stress of going back to work...maybe it was the Acthar shot..who knows.  I just know that I lie there all night, watching countless episodes of Private Practice on Hulu plus, praying for some shut eye.  But I didn't get any.  And my fact started to puff up and get all red....felt like it was on fire.  

Sooo, another day off of work (I've totally exceeded my sick days for sure), somehow I got Izzy to daycare (because, to add more difficulty to it, Joacim was traveling), and I went home and took a sleeping pill.  It worked, but either something in my body, or all of the lying down, made my eyes, sinuses and nose get all puffy.  I'm such a sexy beast in this photo.

And here's a little video of how truly awesome I felt.
<iframe src="http://player.vimeo.com/video/43126777" width="500" height="667" frameborder="0" webkitAllowFullScreen mozallowfullscreen allowFullScreen></iframe>


But do you know what's even more amazing?  I have had skinny legs and ankles ever since.  Even today...still skinny.  My family was up from Indiana visiting this weekend, and they all commented on how good I looked...how thin I looked.  I even went to a concert last night dressed up in my pretty red wedges that I absolutely LOVE but usually can't fit over my feet or tie around my ankles.  I'm feeling like a sexy, vibrant little thing.  I wish I could draw some crazy conclusion as to why this happens, but I can't.  Nothing makes sense..I've been eating like crap...had a few beers and glasses of wine, my sleep is awful, and have been completely forgetting my medicine.  So essentially, if I do everything that I'm NOT supposed to do, then I feel better?  Wonder what my doc is going to say about this :)

We'll also see what happens today.  I'm back at work, where life isn't so happy, so we'll see if I have a physical reaction (swelling) to being here.  I'm working at home tomorrow because I have my 24-hour urine to do for my monthly appointment at Mayo on Wednesday.

I had a glucose test (not a tolerance test, but a fasting glucose).  My fasting glucose was 118 (their range is 65-100), but my hemoglobin was still within the normal range, so nothing will probably be done.  Even though I swing wildly, sometimes up near 300, until I get in to see her to show her my labs, I'm guessing it'll not change.  I should probably do a much better job of taking these damn readings throughout the day, but that damn needle HURTS!  And I forget.  And I'm wondering how many more reminders I can set up on my phone to drive people crazy.... :)

4 comments:

  1. Oy, I'm bummed you can't figure your patterns out - bummed for you, not for me obviously! I don't know many kidney patients that can, though! Glad you had energy for the long weekend - I am dragging ass this week which is only bad because we have about 60 children running the church grounds every day! :)

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  2. Hey Girl! My mom has FSGS. and we are doing a float for the county Festival and we are looking for brochures for FSGS to let people know more about it. my mom right now is in remission. if u could help could u email me at big10pointersbabygirl@gmail.com THank u so much Melissa. Hang in there girl

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  3. My husband is 40 years old and has FSGS for 14 years, what a frustrating and devestating disease..........

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  4. Thank you for your Blog, My son was diagnosed 8 years ago ( He was 3 yrs old) He is now 11 and we still struggle. Right now he is in the middle of another relapse. We had only been off the medication for 3 weeks and he puffed up again. His protein level was at 500. He is on day 3 of missing school and so puffed up he cant hardly open his eyes.. This disease is devastating. As being a mother of a child with FSGS and the numerous relapse we have had to endure, It never gets easy! With Each relapse I wonder if this will be the one he cant over come. Each relapse is as devastating as the first. I have yet to find hope during this emotional storm. We feel so alone in this. My prayers go out to you!

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