You NEED to see this : FSGS sucks

I was on Facebook earlier, and another one of my kidney peeps posted this to her profile...it's moving and terrifying all at the same time.  I don't have any other words, but I think it speaks for itself...(now if only YouTube would work properly so I could embed it here...argh)

http://www.youtube.com/watch?v=NZDn8Itkymw&feature=BFa&list=ULjaS1OHEOBy4&index=1#

June 19 Clinical Trial (week 2) : FSGS Sucks

Yesterday, I drove down to Cincinnati for Week 2 labs of my clinical trial. I took Izzy with me to keep me company, plus I'd hoped that I wouldn't scream as loud when getting my injection as the last time :) I think she most enjoyed the toy fire truck in the waiting area....

Week 2 of the clinical trial includes height, weight, blood pressure, temperature, blood draw (2 vials), and 1st morning urine specimen (which I collected yesterday morning). The entire time Izzy's asking me a bunch of questions, which I think is good. This whole thing (the disease, not the clinical trial) will probably get a lot worse in the future, and I want to make sure that she's comfortable with everything.

I also got my week 2 injection of Humira. This time, I decided to get it in my stomach. Barb had spoken to rheumatology (which is the group that normally administers the drug), and they suggested that I ice the area before the injection to lessen the pain, and it totally worked. I'm not saying that it didn't hurt, because I could still feel the burn of that liquid going in, but the pain wasn't as severe, and it didn't last as long. And yes, I still screamed a little, but Izzy wasn't in the room with me when I got it...Barb graciously took her on a little walk while the nurse was giving me the injection.

So far, I'm happy. Barb was shocked by how much my swelling had gone down, and I think Dr. Goebel was pleased too. Who knows if it's the Humira, but I don't really care right now. Sadly, the swelling has come back a tiny bit, but still NOTHING like before Saturday. Keep your fingers crossed that things stay like this for me!

Clinical trial days are usually pretty tiring. Spending over 4 hours in the car is never fun, but especially not for me. I'm like a baby in the car...I CANNOT stay awake. I get so bored driving...the only thing I can do to stay awake is eat and listen to podcasts, so that's what I do. I always have a snack, and my iPhone loaded up with podcasts to listen to. Most of the time I listen to photography podcasts...I figure it's as good of a time as any to have my undivided attention...I usually pick up a few good tips on marketing at the very least.

But it's not just the drive yesterday that was tiring...it was the entire day. After leaving the hospital, we went to get something to eat (which took 1 1/2 hours thanks to Izzyboo :) and then headed over to Ikea to return some things that I purchased on my last trip down. Then we drove home, hitting a few nasty storms along the way....

 We didn't get home until around 5:45pm.  Since it was cleaning day Wednesday today, I had to pick things up around the house and put the mess away.  It was also trash day, so I had to get that done too.  Then I had a NephCure conference call that lasted over an hour.  We're working on organizing our NephWalk for this year, but it's not easy with the very small team we have.  We are fortunate enough to have another member, Belinda, whose daughter Desiree has FSGS.  I wouldn't wish this on anyone, but I'm glad we have new members ;). After that phone call, I chatted with a realtor for a bit (long story to come soon), and then caught up on the phone with another friend who has FSGS (Hi Leanne!).  In total, I think I was on the phone for 2 1/2 hours.  And I'm NOT a phone person :)  And what was my dear daughter doing the entire time?  Yes, you guessed it...being entertained by Netflix.  I definitely did not win any Mother of the Year contests yesterday :).  And after THAT, it was dishes, and then bed.  I don't remember turning the light off, I don't remember falling asleep, and I sure don't remember the first alarm that went off this morning.  BTW..I'm solo parenting over these couple of days since my husband is traveling for work. 

I MIGHT be just a little overcommited right now....just a teeny bit.  But you know what?  There's absolutely NOTHING that I can think of giving up.  Being a wife, mommy, photographer, volunteer, clinical trial participant, FSGS advocate with a full-time engineering job isn't easy, but I really can't imagine it any other way right now.  And now, I'm off to bed :)

Dare I speak good news? : FSGS Sucks

Well, I'm nervous about posting, but so excited that I must. Here were my feet on Friday.

And then, Saturday morning, inexplicably, they looked like this...

Oh yes, my friends...them there's BONES IN MY FEET THAT YOU CAN SEE!!!  And I ate Japanese food Friday night (soy sauce = mucho sodium). But it gets even better...because it's stickin' around ;)

And this was AFTER a day spent at The Children's Museum.  And even just before posting this, they STILL look normal!

OMG OMG OMG....Seriously, I can't even begin to articulate how happy this makes me. I wore shoes today that, two weeks ago, I couldn't even fit on my feet. I have ankle bones. And here's the weird thing...I stopped taking my Lasix a week ago today. It wasn't doing much for me, so I decided to quit taking it. You eventually build up a "tolerance" to it, so I thought I'd try to go off of it for a bit...see if the break would make it work again.
I honestly didn't think anything about it until my friend, Rebecca, said something this morning, but what if this is because of the Humira? I mean, anything's possible right? And maybe that means that it's doing something GOOD? I'm not one to get all crazy hopeful, but wouldn't it be GREAT?  And isn't it funny how BIG the little things can seem when presented at the right time?