Time to try something new

So I'm trying to keep my blog up to date so you guys all know whats happening in my NS journey and I've had some big changes in the last week. So last Friday when I woke up I still thought Rituximab was a long way off as my specialist was trying to get me funding and had just gone off on his summer holidays. However, last week I got a phone call from his colleague telling me everything was all sorted for me to have the treatment and it would go ahead the following week!!

On Monday I had a call to tell me I was booked in to have my first Rituximab on Wednesday. I cannot explain how crazy this week has been, its a lot to get my head round but I guess its gave me less time to worry? I need to say a massive thank you to fellow Neph blogger Matthew, who had the same treatment a few weeks ago and has been there to answer all my questions and reassure me everything was going to go smoothly.

As I try to share everything on this blog today I thought I'd share my experience of Rituximab so if others are worried about it they have more idea of what to expect. Although I can't let you guys know how successful its been yet as its only been 2 days and I'm still sat in my pjs feeling sorry for myself, waiting to be told if I need a second dose when I see my specialist on Thursday.

Treatment day was a super long day, I arrived on the day ward at 11.30 and didn't leave until 5.30 (totally worth the time if it gets me off steroids) and I'm not gonna bore you with the tiny details but after the pre- meds that are meant to help stop your body having a reaction the infusion is started off super slow and sped up every half an hour, so my machine was beeping all the time to be sped up! the lovely nurse put my cannula in my arm so that I could move about and get to the loo easy, which was a god send considering the infusion took 5 hours.

I have to admit, it did have to be stopped for 15 mins as I had a funny feeling in my throat, this is really common apparently so the nurses just kept an eye on me. Although I'm quick admit it was probably nothing and just my anxiety making me feel something that isn't there because I was  waiting for something to happen.

However, all in all everything went well and the new treatment is underway. I'm excited and scared all at once to see what happens, lets hope the weaning off the rest of my meds can get underway once I've seen my specialist on Thursday. Big up to my amazing support team (Mum, Dad and Tyler) for making me smile all the way through.

5 years down the road...

Its really hard to believe i'm writing a blog on living with NS for 5 years; half of me thinks its flown by and the other half can hardly remember life without it. It's times like these (I hope someone out there gets the Foo Fighters reference) that I have to thank those around me for all the help they've given me that has allowed me to continue to follow my dreams in spite of all this. 

Being thankful for those around me seems even more important this year as I've managed to complete university and am waiting for my very final results which would of been impossible without my family, boyfriend and especially the friends i've met along the way. Despite not knowing me from the start of all this they have been nothing but supportive of my constant need to find the nearest loo and my flaky steroid moods. So girls if your reading this I cannot thank you enough. Also, an extra thanks to the friend who sent me an anniversary card for today as she knows laughing about these things is my fave way to deal with them. 

My AMAZING friends and family
who get me through everyday. 

It's difficult to believe after 5 years I've still not had a days break from steroids, truthfully sometimes I feel I've forgotten what its like to not rely on meds. Things are looking up because as I mentioned on my page it's looking like Rituximab is on the cards as my next treatment, lets hope this delivers a well needed break. 

Despite all of the ups, downs and 12 relapses i've had in 5 years if I could go back and speak to my 17 year old self i'd let her know that even though its going to be a long journey she's stronger than she thinks she is. Going though my teenage years worrying about scars and moon face has not been ideal but I'm still here having a laugh and smiling. 

Even though I look pretty normal on the outside, no one really knows what battles your facing. FSGS has turned my world upside in the last five years but heres to keeping my head up for the next five.