Stayed home : FSGS sucks

I woke up this morning and was so, soooo, sooooooo tired.  I have been sleeping like absolute shit.  Last Monday, I was the kind of tired that felt like a hangover, so I came home and slept.  I'm thinking that the sleeping is awful because of the diuretics.  I take them twice a day, and the 2nd set of pills I take right before bed.  For some reason, it seems like they work REALLY well at night, and I spent the first couple of hours going to the bathroom, which means I don't get much sleep.  And then I start to panic because I know I'm not getting enough sleep.  Which leads to even less sleep.  Eventually, it adds up and I need a break.  It was cloudy, dark and rainy...in other words, a perfect day for a looooonnnnnng nap.  And so I did.

And didn't wake up until 3:30pm.

I slept through 3 phone calls (with the phone RIGHT by my ear).  Holy hell....I was tired.  Am I rested?  Hardly.  But I think I can function a little better now.

Sadly, this little nap has postponed my lab results by another day. I turned them in on Monday, and then called my doc on Wednesday to get the results, but THEY still hadn't received them yet.  So I called the lab where I got the blood draw done, but she was already gone for the day.  That was Wednesday.  I'm PRAYING that, when I call tomorrow, I'll have the results, but I've had a lot of problems with labs lately, so I won't hold my breath.

2nd Annual Indy Nephcure Walk - Garfield Park : FSGS Sucks

What the hell is wrong with me???? I just realized that I never posted these photos from the NephCure walk we had on October 22. My mind is slipping (or I'm just tired...distracted...over-extended....)

It was a CHILLY morning....get the goose bumps just thinking about it!  Many thanks to Joselyn Nephcure for all of her help.  She was able to solicit volunteers from Butler University.  She MUST be persuasive because these ladies came to help over Homecoming Weekend!  We were able to get them back in time for their own festivities, but we really appreciated their help registering walkers.

Joselyn also had a Zumba instructor volunteer her time to help us all warm up. Now me? I had a bad experience with Zumba and would like to be able to walk the next day, so I bailed out and took photos of everyone else instead ;)

This is Addy from "Team Sophie" helping to cut the ribbon to start the walk...thanks Addy!

This is Sophie of Team Sophie.  She's 21 months old, and was diagnosed in April of this year.  She's adorable.  Seriously.  She's the cutest!  And I kinda think we're buds now:)

This is Leanne's granddaughter, Jasmine.  Leanne and I spearheaded last year's inaugural campaign, so it was great to see her and her family again.

Sophie's sisters, Rilee and Addy

This is a photo of either those of us with Nephrotic Syndrome or FSGS, or their stand-in.  Sophie wasn't quite my bud yet so she wouldn't let me hold her, but she warmed up eventually.  (From L-R:  Angel's mom, Leanne, Sophie and her mom, me and Wyatt).

And my little one, Izzy :)

When we got back, the kids had some fun painting pumpkins that Leanne brought.  It was a GREAT idea, and the pumpkins turned out great!  Just wish it would'be been warmer so that the paint would've dried better :)

And coffee-creamer jug bowling.  Leanne and her family have a big party every Halloween, so she brought lots of fun things for the kids to do.  These activities and having the playground right nearby made it perfect!

That's the true color of her eyes....no editing here...

Sophie decided to paint her lips instead of the pumpkin

And we're finally friends.  Sophie is an incredibly happy little girl, especially considering that she's on chemo for her disease.

And this is the group.  I wasn't able to get a photo with EVERYONE from the walk because some people had to leave (and I just couldn't get my crap together to get the photo taken..), but we had a really big turnout this year.  I was VERY happy!!!

And here's Leanne and I...best buds :)

We had a really great time this year, and it's so rewarding to see the group grow...that means we're reaching people and getting the word out.  I'm going to miss this group next year, but hopefully the group in Minnesota is as great as this one.  Thanks all!

It's so unfair : FSGS Sucks

I started a group on Facebook some time ago for women with FSGS that either are or want to be pregnant.  I started it because I wanted to hear other women's stories about being pregnant with this disease, because when I had Izzy, I had only been diagnosed with MCD.  I had a fantastic pregnancy and a healthy little girl.

Sadly for me, my doctor has advised against having another one.  I can't get in to remission no matter what drugs we try.  I was in pretty deep denial at that time...I was only spilling 5 grams of protein (funny, right...ONLY 5 grams) but I felt that I knew my body and I just "knew" that everything was going to be ok, so I started the group.  It was pretty small, but we have 25 WONDERFUL women in the group now.  We've had great discussions...great advice...it's been a wonderful way to get to know these ladies, as we all share this disease.

But sadly, we had some bad news this past week.  One of our members was 25 weeks pregnant with her baby, and had to deliver due to some complications.  Even though the baby fought hard, it was just too early, and passed late last week.  This is the 3rd loss for this woman and her husband, and I'm finding it hard to think of ways to comfort her.

I have no idea what to say.  I can't imagine.  I know the pain I feel thinking that I can't have anymore, and it's heavy, but what she's feeling????  I have no idea.

And it makes me so mad.  She'll never know what happened or why, and she'll always be wondering.  She got to hear him cry...she said it sounded so sweet.  It's just crushing.  I've never met her..none of us have, but she couldn't find a better support group than the 24 of us that are waiting to hold her up if she needs it.  This disease takes so much away, but I hope, for her, that it's given her another place to find support.  Sadly, many of the women in the group have lost children, so there's experience. 

I guess that's the thing I'm glad about with this disease.  I've said it before, but I've met great people along the journey this time around.  We share something that only we understand, and we're all there to help pick each other up when one of us is down.  I love my kidney peeps.

Happy Feet! : FSGS Sucks

Seriously...check out how sexy these are!  No really...aren't they the most amazing feet you've ever seen.  You know, I always thought my feet were perfect, and here's finally a reminder of what they look like.  :)  Okay, enough kidding aside (not really :) I'm sooo happy that my feet look like this.  I've dropped 6 pounds since last week, so I think I'm going to try to start weaning off a bit on the metolazone.  I wanna be able to go back to it when I need it again, and I fear it won't work if I stay at this dose for much longer.

 It wasn't all that long ago that they looked like this

 

I WILL take a picture of my achilles tendon to remember what THAT looks like.  And I might even try to cram these gams in some great boots that I bought :)

And on Saturday, I was FINALLY able to get rid of some old medicine that I've been hanging on to because I don't want to just dump it in the trash.  I happened to see a notice in the paper about medication drop-off, and I totally took advantage of it.  Can you believe this is all "old" medicine...that's a lot of money sitting there...