A day on my butt helps the swelling go down : FSGS Sucks

(sung to the tune of "A Spoon Full of Sugar"....Mary Poppins...get it?)

Anyway, I texted my boss last night asking him if I could work at home.  My legs have been swelling more and more, and I seriously needed a day to put them up and see if it helped.  It's freaking me out that the amount of diuretics I'm on isn't even making a dent in this.  How the hell would it be if I weren't taking any?  Holy hell....

My butt hurts, but my legs wobble, and wobbly legs are a blessing because that means there isn't as much water making them stiff.  I wonder how long it's going to take tomorrow for the swelling to return.

I've done a little research, and I'm thinking about hitting my doctor up for an albumin infusion.  It seems like this might provide me some relief, although temporary.  I told Joacim that if my doc would agree to it, then I'd PROMISE to restrict the salt.  I know that I should be doing this, but it's just so damn hard....SO damn hard.  And I guess, in the back of my head, I don't think it'll help, which is why I don't try hard enough.  It probably doesn't make a lot of sense, but that's how it is.

I also got word from my clinical trial coordinator.  There are 4 doctors meeting tomorrow to discuss me (don't I feel so special).  My guess is that I won't get to start back on the trial due to the fact that, even thought I don't have cancer (yippee :) I DO have mild dysplasia.  And putting me back on an immunosuppressant might not be the best idea.  I'm keeping my fingers crossed that I'm wrong, but hopefully I'll have an answer tomorrow.

But the best part of the day was when I checked my email this morning and I found a comment from a posting I did yesterday on this blog.  It was from a mom who's daughter has FSGS.  She wrote funny, witty things..and I imagine that if she and I would be fast friends.  She told me that it helped her daughter knowing that someone else..an adult...felt the same things that she was feeling, and that just made my day.  This blog is great for me because I can rant all I want and get it out, but when I help someone, it makes me feel INCREDIBLE!  I dearly wish I had someone like me writing about this early on so I knew that I wasn't alone.  I don't want anyone to feel alone with this disease.  It can be very isolating due to some of the side-effects of the meds.  It changes us..changes how we see things....changes out we see ourselves.

I struggle with this particular aspect of the disease more than anything else.  I am fully aware that I have issue with how I see myself.  It's unhealthy, and I'm aware of it.  It frustrates me to no end, and I'm trying to figure out ways to heal, but it's hard.  I don't know what "normal" is for me anymore.  Is it the person I was back in 2005 before I was even diagnosed?  Is it me right after I had Izzy but before I relapsed?  I have no idea, but hopefully it isn't the me I see in the mirror every day, cause I don't like her so much.  And I don't want Izzy growing up with body issues...good Lord I don't want that, so I need to get myself healthy first.