Happy Neph- Anniversary To Me

I mentioned in my last blog that its pretty much been three years since I was diagnosed, well today marks exactly three years since oedema started to appear and I seemingly lost my ankle bones over night. I have to admit I didn't realise what was happening was going to be such a massive thing- i'll be honest the first day I had puffy eyes I thought it was because i'd argued with my soon to become boyfriend and had cried quite a bit (I'll let him off as he's supported me through these last three years).

Crazily three years have already passed and i'm still here taking a cocktail of meds, peeing in pots and blogging to raise awareness and hopefully a smile. However, looking back this is not where I expected to be, I guess the same can be said for most people when they discover they've got NS. Originally I thought that once the original episode cleared up I would go straight into remission and just have to keep an eye on the protein in my water. I couldn't have been more wrong, after seemingly becoming steroid dependant and finding out I have FSGS rather than the minimal change diagnosis that I got at the start its become a long journey of different treatments, weight gain and relapses. To be little more positive recently I've had serval stints of being stable of a while taking tacrolimus and 10mg of pred and in my book the longer I can go without a relapse the more I feel i can get myself back on track and be a normal 20 year old and enjoy uni without the worry.

(Picture of my first meal in hospital including my swelled foot that wouldn't fit in a sock)

Of course living with nephrotic syndrome has meant big changes for me which I've talked about many a time on my blog, but you make the best of it of course you do. I'm not trying to sugar coat what we all go though on a daily basis and I'm honest about the problems we face, but theres no point letting it win to most people I look like a normal student who maybe just pee's a lot. I refuse to be defined by a strange little quirk in my kidneys but I want to give neph patients a voice, especially all those younger suffers who are stronger than I will ever be and real hero's who deserve to be heard.

(This photo was taken just after I left hospital 3 years ago with my rather fetching cannula bruise)