Changes are a comin' ; : FSGS Sucks

I had a wonderful vacation.....I truly did. And I feel that in large part, it was due to two things: constant activity and metolazone.

I pushed hard before I left and got my neph to finally prescribe it to me. I had talked with him about it before but he didn't want to give it to me. He's pretty conservative in his thinking, which I appreciate most of the time, and he's really worried about further damaging my kidneys or me ending up in the hospital because of dehydration. At my appointment in Cincinnati two weeks ago, the neph running the trial asked me why I wasn't on it ( after complaining for the gazillionth time about my swelling). He sat down and drew me a picture of how it works in parallel with lasix and treated me like an educated person. I told him about my neph's reluctance, and he seemed surprised. It's a drug he prescribes frequently to his pediatric patients and didn't understand why my neph was hesitance. Honestly, I didn't either. Several of my kidney peeps told me about it and how wonderful it was for them. So I was armed with a bit more information and immediately emailed my nurse to ask her to ask him to write me a script.

I didn't hear from him for a couple of days, but I knew that if my neph wouldn't do it then my clinical trial neph would.  I stopped by my neph's office on Wednesday afternoon to drop off my FMLA medical cert form to him and he ushered me in. He wrote me the script but was CLEARLY not happy about it. He told me to be super careful about maintaining my fluids so I didn't get dehydrated, and generally seemed kinda shitty, which I just hated. I mean, I'm only looking for something to help me freaking bend my ankles again!!!!

Anyway, I started taking them that night, and MN do they work fast. I seriously had to get up to pee twice overnight, and I peed A LOT! Didn't get much sleep, which wasn't great because we were trying to start driving at 7:00am (yeah, funny idea for a non-morning person like me:) but I could tell that something was happening, and that made me happy.

It took about two days before the I saw the effects, but that drug is nothing short of miraculous to me. Seriously, I had ankles, arches and ten individual little toes. I could point my feet again! I could sit on my knees on the floor! Ecstatic doesn't begin to describe it. I had a few issues with dizziness, but that was about it, and it allowed me to have a great vacation. For the first time in awhile I felt normal and pretty. I wasn't embarrassed to show my legs because they weren't freakishly swollen. I ran around on the beach with a confidence I haven't felt in a long time.

And now I'm home. And I'm not taking metolazone right now because he wants me to only take it temporarily. What that means, I'm not sure, but I have an appt. in two weeks to figure that out. What it means right now is that the swelling has returned, and I'm once again a freak. I did get 4 days of normal shoes, but it looks like I'm back to wearing the 4 pairs of shoes that fit me.  And sitting back at my desk every day for hours on end is not helping it either.  I was getting a pedicure tonight, and the guy actually asked me what happened to my legs....clearly it's pretty obvious that it's not normal.

All of this has pretty much just left me depressed and tired.  My intermittent leave is running out on the 20th, my neph is being a pissant about signing a new form, which I TOTALLY don't understand because he keeps telling me to elevate my feet as much as possible and take it easy.  Not sure how I'm supposed to do that. 

Here's the thing...I've had so many people/doctors tell me how incredible they think it is that I work a full-time job, have a toddler at home, try to run a photography business, raise money for nephcure..blah blah blah...all with a kidney disease.  And the thing is that I HAVE been able to do it, but it's not been easy, and those intermittent days have been a lifesaver for me.  They allow me to stay home, sleep, rest, elevate...rejuvenate, and without them I feel like I'm going to be tired for forever, and any little sniffle is going to turn into pneumonia.  I'm being dramatic, yes, but that's where my brain is right now.  What am I going to do if my doc doesn't sign the forms OR my FMLA isn't approved???

Did you hear the news??? : FSGS Sucks

I go on vacation and all sorts of crazy things happen.  They found a cause!!!!  Holy shit they found a cause of FSGS!  And my friend, Jennifer, who is also suffering from FSGS, was the first to tell me via a text message :)  I LOVE LOVE LOVE technology!!!

This article in Nature Medicine provides details, but even I have a difficult time figuring out what the hell it says.  All I know is that the very last sentence of an article I read on Nephcure.org reads, "Patients with FSGS and other glomerular diseases will benefit from our finding very soon."  And that, my friends, is all I need to give me a little hope.

Ok, I'm off to do a Yoga/Pilates fusion class..I know, sounds all new-agey and crap, but it's really just that I physically feel so good after coming back from vacation that I gotta see what my limitations are.  I want to post a little about my vacation, so I'll try to do that tonight when I get back....