Anyone who has followed my blog and knows my journey, would have an understanding of where I’m at. But, in the interest of those who aren’t aware, I’ll try to explain. After last week’s vision loss and subsequent headaches, I’ve had time to think (aka, silently freak out!). My initial thought was, if this is…
My central vision blacked out on Christmas Eve, while working, sending me into a bit of a panic. People’s faces were reduced to half an image and text was darn near impossible to read! I smiled at the receptionist on my way out of the office, whilst freaking out inside. I decided to step away…
Today, the 2nd of December, marks 11 years since my emergency ETV was performed (the previous 2 day’s surgeries, were unsuccessful). 3 surgeries over 3 days, while 5 and a half months pregnant… Day 1 – VP shunt revision of a Medtronic Programmable Day 2 – VP shunt replacement with an Orbis Sigma Day 3…
I sometimes think this is such an unfair condition to have. One could argue and ask, compared to what? This would be a “relatively” fair enough question. But, I do feel, (as someone diagnosed with it, someone who knows the full extent of the pain and consequences of the diagnosis and, what you have to…
There are days when I wish I couldn’t read people. The unspoken can sometimes be so loud. • A reaction to something said. • The change of tone in your voice. • The way your face changes: mouth, eyes, brows… • A shift in your posture and demeanour. • Even just silence through no verbal…
The very word “invisible”, speaks volumes if you care to notice it. To look at a person with Hydrocephalus, you wouldn’t know they had it, unless they’ve told you, or the signs are unavoidably visible. Also, many of us, live our lives feeling very isolated and most of the time, very lost. It would probably…
It feels like waiting is one of the things you do a lot of with a condition like Hydrocephalus. Being a person with little to zero patience (I do try though), it can become quite “painful” at times. In saying that, the comparison cannot be drawn between just your average waiting for, “something in general”…
There seems to be a universal law when it comes to the way we are treated as Hydrocephalus patients. (Or, I’m just being overly sensitive – you be the judge of that). I know for a fact that, what I’ve experienced below and so many times before, is not unique to me alone. There are…
When you go from care (practically non-existent) to doctors using words like: “You are high risk”, “This is serious”, “This is important to get checked out, sooner rather than later”, it leaves you feeling unsettled. The only way I can think to best describe it is, being abused – becoming accustomed to that way of…
I can be angry that life dealt me the Hydro card. I can curse everything under, around or above the sun…but, it won’t make a difference. 29 years old and living a reasonably sheltered life (as far as this condition goes), that’s the reality I faced before I read the words “Mild Hydrocephalus” on a…
