Wednesday, July 25, 2012

It's been a rough few days : FSGS Sucks

Last week was an exhausting week, as I wrote about.  The Wednesday after that last post, I was done.  D.O.N.E.  I got back to the hotel around 4:30pm, put my jammies on and crawled in bed.  I was SO shaky and dizzy and tired.  I didn't take my acthar because I was afraid it would make things worse, and I just couldn't afford that last week.  I got a good night's sleep and I was better on Thursday, but still WAY more tired that I normally am.

In my last post, I wrote about feeling the physical limitations of FSGS...the frustration of not being able to be 100%.  This past weekend, there was a point where I couldn't even get to 10%.  Saturday night I had another bout of insomnia.  THAT is the most frustrating side effect of Acthar. But by Sunday morning, it was accompanied by a migraine.  So let's review, shall we?

insomnia + migraine = HELL

This was the kind of migraine that makes you vomit (which I did), makes you nauseous (which I was) and makes you "feel" every single sound (which I did).  Hell doesn't really describe it actually.  And it felt like it would never end.  The pain was constant, with no relief to be had.  I eventually took 2 sleeping pills Sunday night and got some sleep, expecting to wake up Monday feeling better.  I've had migraines before, and they usually only last a day, so I was expecting normalcy for Monday.  But no no nooooooo....that would be too GOOD.  THIS is what I woke up to:

Oh yeah...I'm sporting the "Rocky Balboa" look.  I still felt like hell. I couldn't go to work (how in the hell would I explain THIS???)....hell I could barely drive myself to the doctor, but I did.  No appointment...just walked in, determined to wait until someone could see me.  Eventually I got in to see another doctor (my normal pcp was booked for the day), and I told him what was going on.  He took a look at my mouth (my tongue ripe with flush still...awesomesauce) and said I looked dehydrated, and sent me to the ER to get some fluids.

I walked downstairs to the ER, got a couple bags of fluids, and was sent merrily on my way.  The nursing staff kept saying, "you feel better, don't you?" as though they were trying to convince me that I should feel better, and I kept telling them no, but what else could they do?  They had no idea about my history.  They told me my labs were normal, which then led me to believe that they were crazy because I hadn't taken my meds since Saturday morning (and I KNOW my potassium would've been low because of that). 

Anyway, I came home and tried and tried to sleep it off, but with pain like that, you just can't sleep.  So I caved.  I took an Aleve.  Actually...I took 2 of them.  And that's all it took to make me feel better.  Two little pills that I'm not supposed to take made all the difference in the world.

What's making me crazy is that those two little pills could end up resulting in bad test results next week.  Did I do the right thing?  Well, I think for me, I did.  I couldn't miss more work...I don't WANT to miss any more work, especially not right now...while I'm so new.  And I'm not comfortable sharing my illness at this point....this job is fairly high-profile, and I just can't risk it right now, and I don't want to.  I'm SICK of these kidneys, and am ready to "off" them.  I know...I sound crazy, and dramatic, but I'm totally serious.  Why in the HELL am I trying to save these things again?  Is this the quality of life I should expect?  Should I just "deal" with it and not live?  Well, I just can't.  I'm sick of being sick.  Screw these kidneys.
Dear god...these pictures even freak me out, and I look at this mug every single day.  Look how ROUND it is!!!  I won't post pics of my personal flotation device, but it's impressive.  How else could  go for 3 days without eating and not lose any weight?  Freakin' ridiculous.

I finally was able to back to work eyes were still puffy, so I told people I had an allergic reaction to something.  I felt awful lying...seriously.   It's not easy keeping it quiet when I've always been so open about it.  I have to be very conscious of what I say.  I've got my 24-hr urine collection next Thursday.  Before this job, I had no problem saying I needed to work from home because I had a pee test.  I guess I'm lucky that I don't have to justify it now...working from home is a viable option for me.

I'm sure that everyone with a chronic illness goes through these highs and lows.  I happen to be in a valley right now, but I'll rise up....I just have to work through some things first.  Guess it's time to see my therapist :)  I haven't seen her in 5 weeks due to family visits and this new job, and I kinda miss talking to her.


  1. Jenn,

    I am so sorry to hear how awful this is for you right now! I cannot imagine how bad you are feeling, but if I could I would reach out and give you a big hug!!! Love you! Aunt Diane

  2. Damn it, damn it, damn it. Just damn it.

    How often are you doing 24 hour samples? I am at twice a year and am already dreading my next one this fall. I don't know why, except that I hate to take a day off to collect pee!

  3. Sorry Jenn-- life really blows sometimes. FSGS blows ALL of the time. Hope you get out of that valley soon!

  4. Wow, for the first time in years someone understands. Right now I'm laying down debating on whether to call in to work or take a half day. I'm so exhausted, after 11 hours of sleep last night. Creatinine 5.3, just did labs yesterday so its probably higher now. But, my dr has on vacation til 8/6. Blood pressure meds work, but its still high. 6 bp pills a day. Prednisone almost broke me with the side effects, literally, my arms felt broken. Cyclo sped up the decline. I'm on the transplant list now starting dialysis soon.
    I'm really glad I found your blog, thanks!!
    Fsgs sucks!!

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    WhatsApp +91 779-583-3215


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