She's also going to send me my latest lab results to me tomorrow. That is one of the biggest personal benefits of this trial for me, in that I'll be able to constantly monitor my condition to see if it's changing. I have very little control over all of this, but knowing my numbers gives me some sense of peace.
Barbara also told me that she shared the blog with the trial doctor at Cincinnati (Dr. Goebel) and some other physicians, so that's GREAT! The more people that read this, the better. I want comments. I want feedback. I want a community!!!!
I'm so much more motivated THIS time around. The first time with kidney disease, when I just thought I had MCD, was awful. Not from the MCD, but because of the side effects of prednisone. I wasn't prepared at all, and it showed in my appearance, my work performance, and my home life. I feel pretty lucky that my husband didn't pack up and run because I was pretty unbearable. I had a LOT of anger....about EVERYTHING, and I handled it quite poorly.
THIS time around, I did a lot of prep work before I took that first awful prednisone pill. And even though my diagnosis has changed to FSGS, and none of the meds have worked, I STILL feel like I'm in a better place, and I think that's because I've been building my community. I've had changes to talk to other people like me, and the first time around I didn't even think any existed. I have a community of women on Facebook that I LOVE...love the interaction, love the commiseration...just love. There's also the people on inspire.com who have been a big resource for me. I've got a gazillion places I go (ok, maybe not a gazillion, but definitely a lot) to read, learn and share. Social media has been one of my biggest friends during this awful time.
I want to share my story with anyone who'll listen. I tell EVERYONE I have a kidney disease....for the sympathy (although sometimes it's nice on a day I feel crappy) but because people are so surprised, and then they start asking questions. But I also want to hear other people's stories, so please, if you read this and you want to share something, PLEASE DO! Comment, let me know you're story.
I certainly don't feel the need to be positive every day, as you've seen. I'm ok if I have a bad day, but I also know better than to wallow in it too long for fear that it'll swallow me. And with that said, time for a little wallow. I had ankles!!!! Well, I had them for a very short time...mostly Monday afternoon and evening. No idea why they came back, but it was AWESOME! But today, the swelling has been horrible! I knew when I hit the floor this morning getting out of bed that it was going to be bad, but this is the worst so far.
The swelling never looks as bad with shoes on
But then I take the shoes off and it's obvious.
toe that I broke earlier. So now, I'm doing a whole lot of this: