I think my feet resemble Fred Flintstone : FSGS Sucks

Today was a strange day. I woke up this morning, determined to stay home and rest. And then I started thinking about work. And then I felt guilty so I sucked it up and got ready. My feet were huge this morning so I thought I'd wear one of the new pair of shoes I got this weekend.


I purposely bought shoes to wear with my swollen feet, AND I was swollen already, but apparently not THIS swollen. I was down to the last hole on the strap. I couldn't even cram these things into flip flops.



I decided to stop by St. Francis to pick up the necessities for my stool culture. I had to go anyway, so I went back home, took care of that awful process, dropped it off and got some blood drawn, and then went to work.

I could hardly walk from my car to my desk from my feet. And my stomach was ROLLING. I went to my meeting and begged my colleagues to take care of things for me at work so I could go home and lie down. Thankfully they're very understanding and helped out.

This is what my feet looked like when I got home:







Shortly thereafter the GI doctor's office called and could see me this afternoon. I really wanted to stay horizontal, but I also want this stomach nightmare to go away so I went.

My doctor, Dr. Toriano, is an awesome doc from New York. We hit it off immediately, I shared my story about my kidney disease, he took a trip down med school memory lane, and then ordered up a colonoscopy. That's right, my friends, a COLONOSCOPY. Oh God. I asked to have it scheduled ASAP so I didn't have time to chicken out, so it's next Wednesday. Yippee. A butt probe.

It's 11:11pm. And my feet are still swollen. My stomach is rolling and I'm hungry. And did I mention that I FINALLY got my period today, after a bizarre, unexplained 2-month absence??? Today sucked.

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Ewwwwwwwww : FSGS Sucks

I find few things to be more horrifying right now than the stool sample collection process that I just completed.

Same old song - FSGS sucks

Today was rough.  Started off with diarrhea and nausea (feelin' like a broken record here).  Thankfully the poop went away but the nausea was there to stay most of the day (damn...that's a pretty fine rhyme ;)  I stood up a lot today, can you tell?  I am seriously afraid that my feet might spring a leak if I continue to stand.  I'm lying down right now watching American Idol with my feet seriously elevated, but if there isn't any relief tomorrow, I might just have to stay home and keep my feet up, since it seems that the lasix isn't really doing much for me at this point.  Unless it IS, and my skin would split without it, which is just frightening and gross.

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It's back - FSGS Sucks

The nausea, that is...and the diarrhea.  I'm figuring it takes approximately 24 hours for a dose (2 tablets) of immodium to wear off.  Seriously, it's like clockwork.  I couldn't eat breakfast this morning because of the nausea.  I stopped by Starbucks to get a chai and a muffin, and it's working so far, but I have no idea how the rest of this day is going to go.

I woke up with a fairly painful headache, and just general overall malaise.  My legs are still stupidly (yes, it's a word if I want it to be ;) swollen, and I had to cram my fat feet into my Dansko slip-ons.  I have no idea how I'm going to shove these things into my steel-toed shoes today, but I'm going to try.  I have few hopes of remaining here at work all day..I really need to get to St. Francis to get the lab-work started for my stool culture.  God, I love saying that (note:  that's sarcasm....dripping sarcasm).

This morning I cried because right now, I'm too tired to play with Izzy, and it's making me so sad.  I'm in a valley today.

The gel in my legs

I spent a lot of time standing around today in my steel toe shoes, and I'm suffering from it now.

Where is the concern from my doctor??? - FSGS Sucks

So....I just got off the phone with Dr. Santos, and I can honestly say that I'm pissed.  Maybe it's just me being overly-sensitive, but I got the feeling that he's kinda given up. 

Of COURSE he can't figure out why I have diarrhea.  Funny thing about these doctors...initially, they claim that there's no reason that anything they're doing can be causing problems.  They're there to HELP after all, right????  I call bullshit.  Why isn't he concerned that I might be dehydrated, or losing more nutrients than I can afford to lose? I'm taking 80mg of lasix and shitting liquid.  It seems reasonable to me to be concerned, no?

He's sending me to a GI doctor, and lab stuff for a stool sample (fun).  And then the GI doctor will probably want to do a colonoscopy.  Wow, life just keeps getting better and better, doesn't it?

And it starts again - FSGS Sucks

Ok, it's been about 24 hours since my last round of diarrhea started, and I'm right on schedule for tonight as well.  I'm hoping that I took the immodium early enough so that I can get some sleep.  I've already made 3 mad dashes to the bathroom...Dear Lord, please give me some relief.

No nausea today but the swelling never went down.  I called my neph to get the results from my last blood draw.  Most everything was in range, except my calcium was low and my Cpk high (194).  I'm not exactly sure what that means, as my research didn't produce too many useful results, but hopefully I'll get to talk to Dr. Santos tomorrow.

I got home tonight, ate some dinner and took a soaking bath in epsom salt to soothe my weary asshole.  And not 20 minutes after getting out of the tub did it start all over again.  God, I'm so sick of this shit (no pun intended).  The gurgling in my belly brings on a wave of emotions that I can't describe.  The size of my feet terrify me...they hurt today, and I'm scared that if one of the dogs steps on my feet that they might explode.  Seriously.

How in the hell am I going to function all day tomorrow standing up, walking around and wearing steel-toe shoes??????

I survived last night - FSGS sucks

I swear, another night like last night and I don't know what I'll do.  I spent 3 hours in the bathroom last night, and I was MISERABLE.  Thank goodness the immodium finally kicked in, but not until around midnight, so I didn't get nearly enough sleep.  And my asshole hurts.

I WAS able to eat breakfast at home this morning, and that hasn't happened for about a week.  I'm normally pretty nauseous during the week, so I was happy I could get a bowl of cereal in.  Of course, I still had an omelet when I got to work to keep up with the protein blast.

I've got a call into my nephrologist this morning to talk about this.  I can't imagine continuing this way...I'm worried about this week as I've got to spend some time in packaging implementing my project, and I can't imagine making it to the bathroom in time with de-gowning and whatnot.  Freaking awesome.

 Left toes completely wedged together this morning.  Sooo swollen.

I knew it was too good to be true -FSGS sucks

I was convinced that this whole diarrhea thing was over. I hadn't gone since Friday night so I was feeling pretty confident by this evening. Of course, that confidence was smashed with 7 trips to the bathroom so far. I'm taking Immodium with a Pepto-Bismol chaser.

It's shaping up to be a long and miserable evening.

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