It’s been awhile and I wish I could say it’s because things are going well. Since our last post I have had 3 surgeries a few procedures...

2024 and already have the next surgery booked. So my shunt has been kinda just left without anyone wanting to keep an eye on it and now...

Anyone who knows me knows I love pushing awareness for my conditions. I came across these necklaces on Instagram from Aware Causes and...

Ohhhh whats in the box! I was having problems with my current generic walker (and walking) and my research led to the Rollz Motion 2 in 1...

It has been a long time and a lot has happened, not much good. There has been some personal issues I wont discuss but it has really...

Around 13weeks ago I had my skull fused to my spine and my spine fused down to the C4 vertebrae. This was an endeavour that took a decade...

It's how everything started for me. As mentioned in my "How it Started" blog post Chiari Malformation (and Syringomyelia) was my first...

As with any acronym in medicine, it has many meanings. In my field of study, it means Excessive Daytime Sleepiness, but for my body, it...

You live in Australia they HAVE to treat you if you are sick. (lots of emphasis coming) Not quite as easy as that. Yes, I am Australian...

Anyone who says differently is selling something - William Goldman (Princess Bride) Sadly, this is true for me. Everyday, every hour,...

What would you do if your entire life revolved around a single square meter of a room? I have my spot in this bed, its on the left of the...

Yes, it is as horrible as it looks. I had to wear it for over 3 weeks and do everything in it including sleeping (weirdly less...

Age 12-18: I still remember the day so well. I woke up and knew something had changed, but had no idea by how much. I had pins and...