I feel like it's been forever since I've written about kidney disease here.
Really, there isn't much to report. I went back to the clinic last week and I'm still in remission. :)
Prednisone? I still have to take 9 mg every day. However, this isn't because I still need to treat my condition. It is because if I stopped taking it immediately, I could experience nasty side effects, so I have to reduce them by 1mg/month until I reach 0.
Even though this means I won't be finished for 9 more months, this doesn't bother me. As my dosage is so low, 99% of the side effects have already gone.
Having my second lot of good test results in a row has really helped me. When I first found out that I was in remission, I was happy, but a little while later, it started to dawn on me that although I am healthy now, FSGS is always going to be around, and I have no guarantee that I will always be as healthy as I am now. I wrote this post; "
When good news is harder than I thought it would be".
I don't feel how I thought I would. I've always known that this is something I'll have forever, but today was the first time I'd ever actually stopped and thought "Ok, so now what?"
Even though I really have no more reassurance of good health now than I did back in November, time has helped me.
Another thing which has helped has been talking to a friend whose husband is a cancer survivor. They shared that he felt this way when his treatment first worked, but that now he just sees himself as a healthy person, albeit one who is a little more aware of his health and taking care of his body.
This helped a lot. I was glad to hear that I wasn't crazy, and that, in time, I would feel normal again.
Am I exactly the same person as I was before all of this? Kind of. Obviously it's hard to experience something like I did and not be changed by it, and I have been. I'm more conscious of how I look after myself. I can't stop myself from relapsing, but I can look after myself by eating healthily and exercising and all that jazz.
On the other hand though, in terms of physical appearance, energy level etc, I think I am back to normal. I work full time and don't think I get any more tired after preschool than anyone else would. I fit all my pre-prednisone clothes, and although I am still working on losing more weight, I don't feel self-conscious and fat and terrible about myself anymore. People I have only recently met don't know there's anything unusual about me unless I tell them - sometimes I do, sometimes I don't.
FSGS is always going to be there, but overall, I am moving on with my life* quite nicely thank you! :)
Wow, this was a long and rambling post. I feel like I really need to blog more often, then maybe I wouldn't rant and rave like this when I finally do! HA!
* In a pretty major way, actually, which I can't blog about yet but wish I could!! ;-)
