4 years and counting

So today marks 4 years since I was finally rushed to hospital and diagnosed with nephrotic syndrome after weeks and weeks of constant swelling, blood tests and trips to the doctors. I clearly remember feeling so full of relief when I actually knew what was happening to me and in all honesty at the time ending up in hospital meant getting better, even if it was one of the scariest things I've ever been through.

Got to say I did think that everything would be sorted once I walked out of that hospital after a long week of drips and drugs, I really didn't know the nature of NS at that point and thought I was fixed, the swelling had gone and for all I knew then the steroids were not a long term thing, Ha, here we are 4 years later still on 40mg, never fab but battling through as per.

I know compared to a lot of sufferers my journey is still relatively new, 4 years is a pretty short time compared to some of you that have lived with this for most of your life, but I'm not going to sit here and lie it really has turned my life upside down and its taken me a long time to make my peace with nephrotic syndrome just becoming part of my everyday life, not to mention learning to live with the crazy that is caused by long term steroid reliance.

I'm not going to be sad today I want to celebrate that I've made it this far and that I've finally learnt to love my body after everything its been through.  Yes I'm always going to have scars and yes I'm always going to be hungry (My whole life is fighting steroid hunger now) but that doesn't  mean I can't love life like I did before, if anything I'm thankful for the fact I can still be at uni and attempt to carry on pretty much normally.

To be perfectly honest i've had to stop beating myself up on the bad days, because in four years I'm allowed to get angry that life isn't working out how I might of expected when I was leaving high school and all this was way off in the future. Its going to get me down but i'm honestly doing the best I can, theres always going to be challenges but I'll continue to try and smile and write blogs about the ridiculous situations I find myself in.

I owe the biggest thank you's to my family, for the countless emotional meltdowns they've defused, the long hours we've all spent in hospital waiting rooms when we could of been anywhere else and for the constant understanding that I will eat the entire content of the fridge if I'm not restrained!! Another massive thank you to my boyfriend, who in the last four years has put up with far more than he signed up for and even agreed to move in with me despite the countless roid rage incidents he's been on the receiving end of and the constant waving of dipsticks under his nose. Finally, to Norfolk and Norwich Hospital and their renal team (Especially Doctor Andrews, if you ever read this) who have gone above and beyond to allow me to be at Uni and continue treatment, I honestly cannot praise and thank them enough!

Here's to the next four years of the fight!!!!

Taking the good with the bad

As I think I must of written this on this blog one million times before, but the nephrotic journey is a total rollercoaster in terms of emotions as well as just day to day life in general. This week for me has just proved it once again, just when you think things might be going your way back comes that little green square to throw your life into chaos once again.

I'm now home from uni for the the summer and last week after getting all my essays and work back  I know I have passed second year with a 2.1, which has given me a massive boost considering I had a relapse totally slap bang in the middle of deadline season and of course there has been points where I didn't think i'd even get to uni in the first place. (Big up to my Uni pals for getting me through the sticky times!) So its safe to say at the end of last week I was feeling really positive and everything felt back on track, dare I say it I felt pretty normal. Cue nephrotic syndrome to put an end to that.

It had been a couple of days of trace dips but i'd just shrugged them off as nothing, it was easy to put it down to stress and the busy schedule of returning home and stuff. Not so easy to pretend a plus 2 is nothing though is it! See I was convinced I wouldn't relapse for a while after February's return as I had been on antihistamine and convinced this was the underlying issue, to be totally honest I think it still is this is the third relapse i've had at this time of year, so its got to be something! I Just don't think that over the counter aids had been enough to combat my reaction to the pollen.

After 3 days of Plus 2 I contacted my specialist and as he's away was advised to go and get blood tests so we can catch the relapse quick- I know a relapse is plus 3 for 3 days really but when I start seeing the signs my  doctor tries to diagnose it ASAP to avoid swelling and stuff especially as I don't think my scars on my legs could take many more swelling incidents.

So bloods were done yesterday and now we a playing the waiting game! I know that relapses are awful and I'm not saying I'm okay with all this (I've cried enough tears and been really angry!) But what else can I do need to just get on with it and get through it, it's not stopped me this far so I'm not going to let it start getting in my way now. I feel like I need to keep up to date on here as you people are kind enough to take the time to read this, so I can at least take the time to be honest.

Sending so many yellow thoughts to everyone! Hope all neph kids are finding their exams okay, remember you are unstoppable!