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...
Articles with the Tag When life happens
Hydrocephalus: I’m not scared to face all this on my own.
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. •...
Hydrocephalus: A ticking time bomb…
You don’t know when, you don’t know how…but, you know it will. Each day goes by, turning into a week, a month…a year. Moments of happiness, moments of sadness and…moments in-between. Regardless thereof…the aching pain inside your head reminds you of your own reality. People come and people go,...
Hydrocephalus : The effects run deeper than just physical pain…
It’s been 9 years since I last had brain surgery, excluding the ICP monitoring I had a few months back. I feel fortunate, for lack of a better word, compared to others who endure more harrowing times. The moments in-between where I questioned and wondered if what I was...
Hydrocephalus: Some food for thought…
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...
Hydrocephalus: Some conversations aren’t worth having…
Is it really worth having a conversation with someone who doesn’t understand what Hydrocephalus is all about? (I’m not talking about Awareness or education because that will always be worth it). Someone who doesn’t get that this is a serious condition, requiring immediate action, in some cases? Someone who...
Hydrocephalus : Do you limit yourself when it comes to learning?
Fear…a driver for most (negative) things in life. It’s certainly blocked me from doing a few things. In fact, had it not been for fear, I now know that nothing (physically) would have happened to me. But, I stopped myself before I could reach that point. When I started...
Hydrocephalus: Help me to help you…
This post is for all those living with and, supporting someone, diagnosed with Hydrocephalus. First off, I would like to acknowledge: The fact that you’re in this alongside your Hydro warrior is admirable. Not everyone is made to withstand the challenges life throws our way especially an Invisible illness...
Hydrocephalus: When you hear but don’t listen…
2 weeks ago, I had ICP Monitoring done (only my 5th Hydrocephalus-related surgery since being diagnosed just over 11 years ago). There were 2 things of note, amongst others, I took away from that experience: A nurse who looked at me surprisedly when I told her I have Hydrocephalus...
Time…How a day can seem like an eternity
Four days ago I was “fine” and now, each day closer to the next feels like an eternity as I will time to pass quicker. Time, something which feels like a luxury, a priceless possession I wish I had more control of, with a dash of patience. I’m at...