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.