There are a few ways in which Hydrocephalus and having had brain surgery affects us, some in more ways than others. Cognitive skills, memory issues, being indecisive…these are just a few examples. By nature, I “shoot from the hip/say it like it is, don’t take crap and can be quite straightforward” (sometimes to the detriment…
If you’ve been following my blog, you’ll know the challenges I’ve faced/am facing, just to be heard. Being told at my last consult, which always feels like it’s the last, “We’re just not going to operate on you because, you look fine and your tests show that too“. Going down the slippery slope after this…
Intermittent : “Occurring at irregular intervals; not continuous or steady” Working in IT support for the last 20+ years, has definitely had its advantages. Take for example the word “intermittent“, something used more often than not when faced with an unexplainable technical issue. For me to understand this term in the context of my Hydrocephalus…
How much of what life throws at you, don’t you find yourself just wishing you could fling right back? How many times have you felt like enough is enough? How often have you felt like a complete and utter failure? Well…I want to tell you to STOP! Sure, life sucks sometimes and sure it’s…
Where did you come from..? Why did you happen to my body..? What led to me being the “lucky” one to have to grin and bear you..? Why did you choose me..? I guess I’ll never know the answer to these questions… You caused an obstruction in the path of my cerebral aqueduct, making it…
Fighting against doctors while you believe that something is wrong with your shunt or ETV, feels like a daunting thing to do. Helpless is the number one feeling that comes to mind. I remember when my shunt was failing, I fought about as hard as I am now to be heard. If that experience has…
Hydrocephalus, the reason why you are part of certain Facebook groups, the reason why you troll the internet looking for help or answers to the myriad of questions you have. Either you, or someone you know and/or love has this condition. The Hydrocephalus Association in the USA does it right, in my opinion, for the…
Since my last post, I can’t really admit to feeling much better. I sincerely wish I could just lie and shake this shit off me. Click my fingers and voila! But alas… My MRI results have come back with normal ventricles and a patent stoma – Meaning, my ETV is doing just dandy…or is it?…
I’m not a very sporty person (evident from my physique)…I kid you not. However, in any competition I find myself up against, I will admit to being a bit of a sore loser. I might not be an extremist in this regard but I do feel the pangs of defeat a bit more than I…
My past experience has been somewhat different from where I am now. It almost feels like it could be worlds apart…in fact, that’s exactly where it’s at. Better..? Or worse..? Hmmm.. I left my home country, a few years after diagnosis, shunt surgery and eventual ETV, in search of and hopeful of better medical care…
