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Next Surgery

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...

Too complicated and other BS

Who do you see when you are too complex for the specialists? You see your doctors and yes some things may be too difficult for a general...

Update

It's been a hot minute - probably a good year since a posted. Last time I believe I had just had surgery for my tethered cord in mid...

Awareness

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

Rollz Motion Review and Unboxing

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...

Life update!

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...

The Fusion

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...

What is this Chiari?

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

What is this EDS?

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...

Why didn't I go public?

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...

Life is Pain

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

Watching the world go by

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...

Not only Angels wear halos.

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...

How it Started

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...

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