Thursday, April 10, 2014

5 Months?

Yeah...oops! It would appear that I have managed to abandon this blog for a dubiously impressively period of five months!

This wasn't deliberate, I never intended to NOT blog, but I think because once I stopped writing about traveling, I sort of felt like I had nothing left to say.

I also think it's because since I last wrote, something else has happened in my life. My FSGS has come back.

I first discovered this in the middle of October, but nobody really did anything until a couple of weeks ago, as they wanted to wait and see what was really going on, and if it would resolve itself over time, which it hasn't.

At some point, I will have the mental and emotional energy to fill in some more details, but at the moment, I will say that on the whole, things are kind of ok. I feel well, I am about to start a very good job, and I have absolutely no desire to give up and go back to New Zealand.

Will I have to do this? Eventually, probably yes, but maybe not straight away.

Last week I started steroids again, and tomorrow I will start Rituximab. This is the same treatment I had at the beginning of 2012, and the way I managed to get into remission for almost a year.

Although I am realistic about the fact I'm "sicker" now than I was then, and slowly and steadily heading towards needing dialysis and a kidney transplant, there's also a tiny bit of hope. Maybe this will work again. Maybe this will be Second Time Lucky and I'll get another year, or even more, before I'm too sick to...stay here and work full time and do everything I so badly still want to do with my life.

I know this day will come, probably a whole lot sooner than I thought, and definitely sooner than I hoped, but still, it isn't today.



TravelGenee said...

Hi, nice to hear an update. Sorry to read you are not well at present. Look after yourself and keep strong.

Carolynne said...

I suspected this might have happened. I am so sorry Holly. What a hard thing to be going through by yourself. I hope you've made some great friends in the UK to support you. Just know we are only a computer screen away. Good luck with your new medication and I hope you improve and get well soon.

Aynsley said...

So sorry this happened to you .. I know exactly how you feel. I had a 6 year partial remission from my FSGS but it came back about a year and a half ago. It's great to hear that you are getting great treatment.