2 years down the road

Its the time of year that messes with my head - its 2 years since I first swelled and was diagnosed with NS. As much as really I suppose the time has gone fast and I have done an awful lot of living and growing up in this time, its hard to come to terms with the fact I'm 2 years down the track and they still have no idea how to treat me.

More to the point this marks 2 year of being on steroids and even worse than that its not looking like I'm coming off them anytime soon. I am sick to the back teeth of the side effects and don't even want to think what its doing to the body of a teenage girl. Lately I've been like a little old woman, hardly able to get out of bed because my joints hurt so much.. I'm 19 years old not 89. Sometimes I wish I didn't have to go through all this, but then I would never in a million years wish this on anyone else.

Half the time when people make out to me its not a big deal because they don't understand I wish there was a way of educating them but then its probably my fault I find it easier to make a joke out of living with this than explaining whats really wrong. I live on a cocktail of drugs with horrible side effects; not very glamorous!

I do have love and support around me but sometimes its just hard to explain how I feel, so if your reading this and I've been a total cow at times I'm really sorry, but i struggle with this sometimes.

Most important thing is whatever happens and how long it takes we all try to keep smiling even if we do have a few rubbish days thrown in.

The highs and the lows left me dizzy

The title of this post comes from one of my favourite songs; I just felt it sums up what every nephrotic suffer goes through on their journey. well I say journey, maybe roller coaster ride might be a better metaphor?

I know now from the many people I have come across since finding the nest trust that we all have different experiences, battles and stories to tell when it comes to the syndrome. I mean compared to many suffers I had my first episode at a relatively strange age. However no matter how different we all may be what strikes me is the overwhelming strength of every single person I've heard from or read about, not only that but the amount of support they have for each other is inspiring. Its great we can try to help each other through this struggle. 

At the moment I'm still protein free- which is great. Im starting to come down off my steroids once again which is less fun, I'm all over the place emotionally so if i burst into tears on anyone this is me apologising in advance. my specialist is keeping on 10mg of steroids and 7mg of Tracolimus when I get down to it  to prevent any relapse as he doesn't have any other plan when it comes to treatment, he's fresh out of ideas and hoping I grow out of it (not the most encouraging thing I've ever heard, but there we go I'm awkward!)

Lets go back to positives the point I want to make clear is that however you feel you cant let things like this stop you from living your life, Its not something that defines me or anyone else that suffers from it, its just a challenge we have to beat. Last week I went abroad for the first time since being diagnosed nearly 2 years ago and I had the best time ever! There were no hiccups when it came to my health, just had to carry a fair amount of meds with me, but thats not a problem. Of course I was nervous especially flying, but I had a fab holiday and it gave me an escape from all this for bit, just what I needed.