The story and death of 8-year old Vincent Barker, even though it’s a few years old, has left me with a sadness for this little boy and his family. I’ve always had a lingering thought, “I hear about how dangerous Hydrocephalus is if left untreated but just how dangerous is it really?“. I know this is…
This post is closely related to one of my previous Hydrocephalus posts, We are not faking… My teenage son made a comment yesterday and said to me. “Why do you post stuff like that on Facebook? It looks like you’re…looking for attention“. (To put it into perspective for you, there’s one real difference between us –…
I woke up on Sunday, to a throbbing in my head, the kind you feel before you even open your eyes. This was familiar to me like a long lost memory – a bad one at that. At the first sign of it, I could feel my stress and anxiety levels rising because I knew…
It seems a trivial thing to be concerned about but, when I came out of surgery (1st OP) and returned to all my senses the following morning, there was one thing that bothered me. Feeling the bandage around my head and seeing how other people in the ward stared at me, made me feel very…
A few weeks ago, I introduced and opened the doors to Skyewaters.com. However, along with the unknown of this blogging/website territory, comes a few errors and lessons learnt along the way. I realised that my followers from Skyewater33 (my previous site) had not actually followed me as magically as I would have liked. (This has now been…
Do you have an alert card? Something which identifies your condition in an emergency situation. I’ve been searching endlessly for one standard, something that will “speak” for me when or if I can’t. Trying to find something specific to ETV has been a fruitless exercise (Though this card can apply to both ETVs and Shunts. …
There’s a certain level of trust I need before I (literally) let someone mess with my head. Some of the surgeons I’ve consulted with since diagnosis have definitely contributed to the realization of this. When I was diagnosed in 2007, I never knew the surgeon who operated on me upon meeting him for the first…
I’ve been wondering about adults living with Hydrocephalus. Specifically about how Hydro affects your relationships… Has it been a deal breaker (as Dr Phil would say)? Has it added stress or strain and has it even managed to break you apart? I ask because I think about how it affects my own relationship. My husband…
Today is a special day for me, it’s my birthday! I love birthdays, I love the attention but absolutely cringe because of it too…confusing, right? I enjoy making other people feel special, I enjoy making a big fuss about everyone else – especially on their birthday. Yet, when it comes to me, I simply don’t…
In my book Hydrocephalus floating faithfully, I speak about a time where I had a defining moment. It was just after having my first surgery and shunt placement in 2007. I had come back to work after being off for a couple of weeks. Everything felt foreign to me and I felt very displaced. As…
