Theres a fair few of us out there...

It wasn't until Sunday night when I was messing about on the internet that I found the Nest charity/ trust that has been set up for people like me that suffer from Nephrotic Syndrome and I have to say I was overwhelmed for the first time in ages I felt like I wasn't some freak that had dodgy kidneys and no one really understood what was up with her. 

This was when I decided it would maybe be a good idea to start sharing this blog in the hope it might help other people in the same boat as me or even put me in contact with others that have stories to share about there struggles with this syndrome. So please if you are reading this and your kidneys hate you too get in contact with me! I hope my blog might have helped you feel more normal. 

Now I've discovered Nest I'm really trying to raise awareness and hopefully raise bit of money so that we can one day find a cure. This isn't me being selfish but on the trusts website there are stories of young children suffering like me and I cant imagine what it is doing to them, they need the chance to live a normal healthy life!

Im hoping my blog is another way of raising some more awareness because it shocked me that my band Facebook page has more likes than one for a charity that is trying to raise money and awareness for a very serious illness. 

The year it was all meant to change but it hasn't yet..

Ive Neglected my blog I have to admit. After I started taking Tacrolimus and it seemed to work I had no relapse of my condition for almost half a year which is the longest I've ever gone without a flare so  I have to say I got pretty confident that i'd found the drug that worked for me.

However when December 2014 hit and my steroid dosage had been decreased a routine trip to my specialist left me devastated when I was told my nephrotic sydrome was on its way back in a big way. On the plus side (if you can call it that) we caught it pretty early and a quick spell on 50mg of steroids and an upping of my Tacrolimus managed to get it all back under control by the time christmas came back around. Im just going to put this out there.. anyone else who is suffering from this- half the time its not the relapse thats the issue its the being pumped back full of steroids when you thought you were through with them.

I don't know it might just be me but steroids have a huge impact on my life and my way of thinking, its crazy, half the time I don't even feel like me. They give me mood swings; one minute I'm crying the next I'm hyper and giggling at everything. Thats not even all is it, Im hungry ALL THE TIME! I'm trying to be sensible about it as i know its just the steroids but oh my god I just want to stuff my face constantly. These are probably my two biggest issues however the being tired and aching all the time are not all that fun either.

Me being lucky me relapsed again at the start of this month. Considering its been almost 2 years since I was first diagnosed this is really starting to drag I'm now on my 5th relapse and its getting to be bit of a joke. I seem to be super sensitive to steroids but of course I cant be on them forever (nor do I want to be!). My specialist on my last visit suggested coming up with another treatment plan and different ideas. So we will just have to see.