The fear of the Pred Wean..

Well I had some good news on Thursday when I went to the hospital everything is still normal, how thankful and lucky am I!! Lets be honest hospital is a big thing for any NS sufferer, as much as you try and keep track there is always that fear they'll find some instability or something, but not this time and I'm over the moon.

But of course with everything being all good comes the reduction in my steroid dose and I've never been more scared, well not to bore you with my history but I've never been able to drop under 10mg and here I am now dropping too 10mg and 7.5mg every other day in the hope that this tiny drop won't  cause a relapse! So needless to say this is a big step for me and i'm little bit scared, but excited that I might be able to wean a little bit.

I don't know about any of you but any drop in pred always causes weird side effects, it's like your body is a bit dependant so any drop effects you. I've had in the past couple of days; headaches, muscle ache, crying outbursts and full on mood swings. I think coming back to uni and knowing that my safety net of being at home and close to mum and dad who can sort it out, its silly I'm nineteen but its just the fear of the unknown.

But fingers crossed I'm gonna get through this without a relapse and i'll be on the way to a life without drugs keeping me normal. We will just have to wait and see.

Dipsticks and Dolly Parton

I don't often blog this often but I felt like I owed you all something for taking the time to look to my page and giving it a like. So a big thank you, I hope this blog helps but if not it should give you a laugh at my awkward existence! Talking my awkwardness, Nephrotic Syndrome and some of the strange things that come along with it have never really helped the girl who could trip over fresh air before all this came along. So yeah its not been easy and sometimes my confidence has dipped, which I'm sure my fellow suffers will understand that sometimes you just have to laugh at what's thrown at you...

First of all Mood swings- yeah I know this is a horrible side effect of being on a high dose of steroids, which is a common treatment for NS, believe me I've struggled with it, my boyfriend and family deserve a medal for dealing with the ups and down. but looking back now from a much more stable place one memory of makes me laugh every time- I'd been struggling with extreme highs and lows for a while back in the summer of 2014- we were watching Glastonbury and Dolly Parton came on and from out of nowhere I went from dancing round the room to full on sobbing at a coat of many colour much to my families amazement. I've never lived that down and I don't think I will.

Second, Dipsticks and wee pots- probably not so awkward if your living with parents/ partners that understand but when I moved up to Lincoln all my paraphernalia had to come along with me, but as i've said before luckily my house mates are fab and totally support me, the thing that always makes me laugh was the time they all decided too have a go to see what was going on in their pee as you do, it was like a dipstick party!

Theres a lot more things that happen when you've got NS but I haven't quite got the confidence to laugh at them yet, i'll get there eventually and knowing how lucky I am that all of you have chosen to give this a read is such a boost!

Why I hate the hospital but love my scars

It's now 2016, how are we possibly already here?

I'm proud to say that I've been protein free since May and I'm praying that it's stays that way! Hence the fear surrounding my next trip to the hospital, don't get me wrong making plans for what to do next with my kidneys often makes for abit of excitement, but a decrease in medication often leads to a relapse and that is something I really really do not want, especially while I'm at uni and have a holiday planned. 

Don't get me wrong of course I want to come off steroids, that's the dream but I would rather wait until I'm finished uni for the summer and have nothing to worry about. That way  if I do end up back on high steroids and go a little bit mental I'm not away from home and drowning in essays. That's the thing with this NS game it's all about timing. 

The second point of today's long overdue blog is a revisit the idea of why I've decided to celebrate the scars my dodgy kidneys have left me with! This is a massive message I want to get across to anyone in the same position as me, our bodies are fighting enough without us not liking them as well. Over Christmas and new year I found myself weighing up my scars maybe because it's the time we look to improve our body for the new year? Who knows? But anyway after thinking about all the various options I've decided I shouldn't want to get rid of them they are part of my adventure now and I carry the into the new year along with everything else but I shouldn't be ashamed of my fight. 

I promise that now it's 2016 I'll try and blog more 

Wishing all NS suffers a yellow and healthy new year