Cuddly kidneys and drama queens

The more I think about it the more I realise for us NS sufferers it can be a strange and a times isolating existence, when nobody truly understands whats going on with you and quite frankly often thinks your being bit of a drama queen. 

I'd like to start by admitting I've had a fair few run in's with people that despite you trying to explain whats going on belittle our everyday struggle as its something they can't see and therefore refuse to understand. I mean I'm pretty sure being a teenage girl when the swelling hit everyone just thought i'd got chubby and I got a fair few snide comments for getting a letter from my nephrologist for special consideration during my A levels, hey not everyone understands the mental effects of long term reliance on pred and not many people are willing to listen either. 

Now thats my rant over, just needed a vent as i'd seen several people struggling with the fact so many people are unwilling to understand. Now onto a lighter note, I've been meaning to blog about this for a while after me and my cuddly kidney (his names sidney btw) got a fair bit of love on twitter. 

Although he was a joke present from my boyfriend, it got me thinking what a great idea things like this are for children going through problems and mostly about how much nephrotic kids could benefit from something like Sid. For me I felt it would be a good way for them to share with friends why they might be upset or behave little differently, but also could provide an easy and more relaxed way for parents to talk about NS and explain different things to their kids. Plus I'm pretty certain they would make great hospital companions. 

Sometimes it's hard to make light of Nephrotic syndrome when your struggling with relapses and medication, but I always smile when I see Sid, I mean at least I have one kidney thats reliable (although he is fluffy and purple!) 

Teenage Kicks..

Sorry for neglect of my blog, its just been so busy lately, its coming round to deadline and exam season, so I'm guessing I'm not the only one thats totally stressed out right now. I mean on a side note I seriously glory in any NS sufferers that are sitting exams this year, I sat my A levels swelled up and on a seriously high dose of pred- not the best combo along with exams, but if you do have exams believe in yourself your going to do great, if you live with dodgy kidneys you can get through exams!

Anyway after that little side note I thought as I recently turned 20 it would be a good time to have a look back over nephrotic syndrome effected my teenage years and too remember some of the odd things that happen and how I coped with them ( Probably things a lot of sufferers my age have gone through)

Well I've sort of addressed exams so I guess the most major thing I had to decide on due to NS was whether or not to go to Uni or not. As I was having a really bad time with not getting into remission the first time I applied, I will never be more grateful to myself for deciding to take a year out and get myself better. That year gave me a chance to get back on my feet, get in to a more stable place health-wise and also to grow up and get my confidence back. But my decision to go to uni this year has 100% been worth it and despite of one relapse I've been seriously happy and healthy!

While I'm kind of on the topic of confidence I think thats the second biggest impact NS has had on me. At 17 with my diagnosis my confidence plummeted, i think first and formost it was an impact of the steroids, it was a big change in my system- at first I managed to stay positive but with my second relapse the fear crept in and the weight also piled. For a year or so I was hardly ever off a high dose of steroids, meaning it was hard to ever get my weight down, I was constantly hungry and my face resembled a chipmunk. I at times got very low, but my family, friends and boyfriend were amazing at picking me up.

I guess as I enter my 20's i'm still scared for the future and the unpredictable nature of NS, but I'm 1000% more positive now, I'm feeling a lot better in myself, managed to get back to a weight I'm happy with and my face is almost back to normal and between my last relapses there was about 9 months which gave me the reprieve i needed. So I'm starting 20 hoping this is the year something really works.