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)

Baring all three years on..

This is an important blog for me i'm now three years down the line from when my swelling first became apparent, so near enough three years since my diagnosis of nephrotic syndrome. These three years for me have entailed 7 relapses and not a single day off pred since this whole thing started and although I'm feeling far more confident and aware of whats going on with my kidneys it doesn't take away from the fact three years later I'm sat faced with the dark green dipstick once again.

Anyway rather than dwell on negatives I thought i'd take this opportunity to look at what effects three years of NS has had on my body and promote body positivity among all of us, as after all we all go through the same things as one another and we should never feel like we are going through this alone. So I'm going to root through the old photos to show how much nephrotic has changed me, but how that is something I will never be ashamed of.  

1. Moon face.

We all know the effect of steroids on face shape and being 18 at the time of my face totally developing into a scone,  It was not the best for my confidence. I used to pull silly faces all the time to hide how I felt, but now after less prelonged periods on high steroids I'm finally feeling like myself again (gonna use some photos to show just how scone like my face became)

2. Hair thinning. 

 You can also see in the picture how thin my hair became, at one point I was losing massive clumps at once it was horrible, I ended up getting clip in extensions to make myself feel more back to normal. Wanted to include this as I've seen a lot of people talking about it on the Facebook pages and just wanted to say it does, well it did in my case get back to normal. My hair is now back to its usual mane like state. 

3. Mood swings. 

Pred mood swings are nothing to be embarrassed about, I know this is something I've really really struggled with throughout these three years. Ive always been an anxious person but steroids seem to have brought the worst out of me, to the point when I was really struggling I didn't know or like who I had become. The closest people to me also got used to how to help me and knew that if I was having a bad time it would and could pass as quickly as it had come. Also I still have my times when steroids seriously effect me i'm getting used to understanding what they do to my emotions and even recently got my tattoo to remind me its worth the fight no matter how down you feel some days. 

4. Stretch marks. 

For anyone who has read my blog before they will know that my scars from all my losing and gaining weight and thinning of the skin due to steroids are something i feel passionately should be looked at as something that shows strength and not seen by so many as ugly and unwanted. For a very long time I hated my scars, I was scared of what people thought and lost confidence even in front of my boyfriend. But now i've learnt although they are fading they are with me for life and I might as well learn to love them. So in the spirt of sharing my experiences heres a picture of me, scars and all- so if you have got scars like me remember there are loads of us like it and it's your body thats fighting this illness too and thats pretty amazing.

I hope this slightly exposing blog (sorry for all the pictures) might have helped highlight some the shared weird and wonderful experiences NS causes and explained to anyone else out there why sometimes we are a little different. 

Sometimes you just need a laugh

For some reason or another I've had 2 weeks of a plus 2 protein in my wee which was the last thing I expected to see when I've been really stable on 10mg and not even tried to wean?? Seems to be linked to when my hayfevers bad, but who knows maybe I'm clutching at straws? 

But anyway back on 40mg for a week to kick my kidney's butts before I head off on holiday to New York in 2 weeks. Of course I'm excited but why does nephrotic seem to rear its head at the most inconvient times! Only been back on the steroids 2 days and I can already feel myself morphing in the the emotional and unstable wreck that is soph on steroids (feel like I have an alter ego sometimes) but I didn't want to come on here to rant as I know these emotional issues are a major problem for most. As I'm older it's almost laughable how different I become but at least I can explain how I feel. 

Anyone who knows me will know I hide a hell of a lot behind my sense of humour and am happy as long as I can make someone laugh, for me it's easier to laugh as what's going on rather than face anything with too much seriousness because after all you've gotta laugh at these things if not you'd cry (don't get me wrong I've done that many times too) but even with my moon face even tho it's a lot better now I used to always pull silly faces to hide how bad I felt about it rather than show the effect the steroids had really had. 

On the nephrotic syndrome Facebook page someone shared some pred related memes and they really cheered me up so I went on a little explore of the Internet and found a few more so if your having a rubbish day because of this syndrome they might put a little smile on your face. 

Be happy and strong x