NephCure : FSGS Sucks

I'm sure that most of my fellow FSGS sufferers know about NephCure (and if you don't, WHY NOT???)  For those of you that don't know, NephCure is an organization...ok, the ONLY organization, dedicated to finding a cure for my disease, FSGS, and Nephrotic Syndrome.  I'm part of the committee for the Indiana Chapter, which is still in it's infancy.  NephCure's main mission is to raise money for research into a cure for our disease (which is why I'll be hitting you all up eventually to donate to our walk, which we're going to hold in October...you'll hear more about that later).


NephCure has been a resource for me and for others like me.  There is information on our disease in a format that we can share with friends and family, because, let's face it, this disease isn't easy to understand.  A lot of us don't look sick, but we are.  A lot of us hide it very well...some of us have blogs like this to get out the frustration of living with a rare, chronic disease every single day.  There's educational information, research information, lunch and learns, a list of doctors..you name it, you can probably find it there.  And if you can't, then you can probably find someone who can.


NephCure has also been awesome for me in that they constantly feature my blog posts on their site and their facebook page.  I've had SOOO many people contact me, saying that they saw my blog on NephCure.  I love this because the first round I fought with this disease was awful.  The only thing I wanted (other than to go into remission) was to be able to find someone like me.  That time I didn't know about NephCure, so I feel very blessed that I found it THIS time around.  I wanted a community of people to that were there to support each other, and that's what I have now.  I can't help anyone physically, but if I can help in any way emotionally, that's good enough for me, and hopefully I have.  So I feel like I owe something to NephCure.


That being said, if you have FSGS or Nephrotic Syndrome, will you please take a few minutes to complete the patient survey on their website?  The link is http://www.nephcure.org/patient-survey.  This survey is a great help to NephCure as they continue to fund research in the field..research for a cure for US!  The survey is confidential, and it takes less than 5 minutes to do.  Sadly, I didn't even realize it was there until I was on my our NephCure conference a couple of weeks ago, but I did it right away.  THEY can't help if WE don't help.

And if you ever want any more information about NephCure or about FSGS or Nephrotic syndrome, go to http://www.nephcure.org/...there's tons of good stuff there!

I'm not pregnant : FSGS Sucks

And here's proof:

It's funny...well, not really, but I'm pretending.  The last time I took one of these, I was filled with such anticipation...such hope.  Now, it's just a formality...one of the things I have to do for my clinical trial.  To think that I may never get to see the plus sign on one of these ever again...THAT'S a hard pill to swallow.

And the damn swelling is back.  Here's a strangely colored (thank you iPhone and bathroom lighting :) photo of my disfigured feet:

Ankles?  What the hell are those???  Oh, and you see those lines on my left ankle area?  Yeah, those are wrinkles that occur because my feet are SOOO FRIGGIN SWOLLEN THAT THEY CREASE WHEN STANDING UP.  Ahem...excuse me why I got that out.  Of course, I'm annoyed, frustrated, and just plain pissed off.  I SERIOUSLY don't want to deal with it this weekend.  We've got a party to go to on Saturday that we go to EVERY year, and it's supposed to be a thousand degrees...ok, maybe 95, but after 90, does it really make a difference?  Sooo...I've got swollen feet, hot weather, and just plain irritability working for me right now.  Argh.

Holy shit (literally) : FSGS Sucks

Dammit dammit dammit.  It's back.  And this time I'm talking about the poop, or the diarrhea, that is.  I woke up around 2:00am with THE WORST cramps, and it only got worse in the next hour and a half.  Needless to say, when the alarm clock went off at 6:00am this morning, I almost laughed at how awful I felt...ALMOST.

I seriously haven't felt this bad in awhile.  My head, neck, stomach and skin hurt.  All day.  I couldn't get out of bed to take Izzy to daycare.  Thankfully, Joacim did it for me before he left for Chicago.  I didn't get out of bed, not once, until around 2:30pm.  No solid food from dinner last night until around 4:00pm today, when I suffered through a bowl of Cheerios.  I was able to pull it together enough to go pickup Izzy from daycare, but not much else.  Izzy and I are in bed, and have been since 8:30pm.  I STILL feel awful, and my tummy is rumbling.  There's an all-too-familiar "gurgling" that occurs on my left side, and that only means one thing....round 2.  I've already taken some immodium as a preventative measure, so wish me luck that it works.  I NEED this to go away...I NEED to go to work tomorrow.  I NEED to take care of Izzy.  All of these things are either terribly difficult or completely impossible right now.

What's even more frustrating is that there isn't a single freakin' thing I can seem to do to feel better.  I've eaten light..had some soup eventually.  I took a bath...drank lots of water, laid down most of the day, but nothing is working.  I hate days like this...I feel so awful and helpless.  And I wonder if people think I'm faking it.  Trust me, I'm not.  There's pretty much nothing I wouldn't do right now to feel better.  And it takes so long to recover from these things...even if I do manage to make it to work tomorrow (which is in question right now), I'm still going to be "off". 

I'm totally rambling right now, but I had to get it out.  I have to let people know what it's like to be me. And today, it sucks.

Piss : FSGS Sucks

I knew it was too good to be true....the bones in my ankles that is.  I'm sure that they're still there (obviously) but I can no longer see them.  Nor can I see that there is the slighted bit of curve in my calf between my knee and ankle.  Nor can I tell that there are bones in my knees.  It's back.  With a vengeance today.

It's hard to bend my toes.  my ankles.  my knees.  I stood a lot tonight, but there wasn't much of a choice...so many things to do that HAD to get done tonight.  Joacim's leaving and I needed to iron some of his clothes...dinner, colored my hair (yes, that HAD to get done ;).  I'm very frustrated.  That week of normalcy was such a tease.  I got to wear cute shoes.  It was just....normal.

I know that a normal person reading this would be wondering why in the hell I'm bitching, but those of you that know what I'm going through, well...you know what I'm going through.  Shit.