Thanks for my ADHD I struggle with remembering to take pills and then we never fully know how effective they are. So I’m trialling the PillDrill to see if that gives me good habits. PillDrill Hub, mood cube and pill holders The PillDrill comes with a “hub” an AM/PM pill holder, a “mood cube” and several scanning attachments and holder. What is new about this as the pill holders and tags (and cube) are scannable on the hub. So not only does the hub alarm and light up when some

No better time to write about IVIG than during the 4hrs I sit here every 2nd weekend. Intravenous immunoglobulin (IVIg) is a human Blood product from plasma proteins. It takes several thousand donations pooled together to create the product. In Australia it is funded by and sorted with BloodSTAR. To start IVIg one does a 5 day initiation which is not fun at all. One is at risk of meningitis which I got. I was saved by a cyclone closing down the clinic for a few days to give m

Last time we left me I had a port installed. That is still going well, which is good cause they get infected quickly. I’m still doing IVIG and doing it fortnightly and I’m hoping to one day soon access my port myself to do home fluids. I’ve done the training but there is something about stabbing a needle into your chest and the huge infection risk. 2025 continued I have had two surgeries and boy was it a cluster,…what was planned as two back to back surgeries in the same hosp

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...