It’s not enough that you or your loved one has been diagnosed with this condition, at least that’s the way I see it, from “life’s” point of view. (“Life” being whatever it is that controls all the “bad” that people endure). It’s not necessarily a death sentence but it...
Articles with the Tag Invisible illness
People with Hydrocephalus look no different to you…
We walk among you, have hopes, dreams and fears. We are employees, parents, children, students, adults, senior citizens and more. Anyone at any age can receive their diagnosis – we are not all born with it. But, those who are, experience their first brain surgery hours, even days, after...
I’m a member of the Hydrocephalus family…Never Alone
Family. What defines it? Because of all the support groups for Hydrocephalus, I belong to and through my blog, I incorporated the phrase at the top of today’s post in my Hydro Logo. Nothing brings it home more just how big and affected this family is when one of...
Hydrocephalus: Another year without brain surgery…Woo Hoo!
8 years today exactly…that’s how long it’s been since my last brain surgery. 3 operations over 3 days (5 and a half months pregnant) and yet, here I am, writing this post. 8 years since I had my emergency ETV (having surpassed the 5-year mark the surgeon told me,...
Hydrocephalus : An invisible illness that’s painfully visible to me
What no person with Hydrocephalus wants or needs to hear: “Most people I see are in a coma and…you look fine to me” – Neurosurgeon So does that mean I need to be in a coma for you to take me seriously? ********** “I get bad headaches too” –...
Hydrocephalus : Awareness begins with you…
Before the start of this year’s awareness month, I didn’t have a plan of what I would do. However, a few days before, I felt a growing need inside of me to spread awareness simply because I recognise the need to shine a light on this invisible illness. It...
Hydrocephalus the elitist club…NOT!
Over the years of dealing with doctors, some have made me feel the need to (overly) explain why and how I developed Hydrocephalus. Almost as if to justify it… Granted it’s normal to be asked this at a first consult with a new doctor to give them the context...
Hydrocephalus: I reckon having someone in your corner is better than the alternative.
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...
Hydrocephalus 10…Celeste 0
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...
Imagine having a way to communicate your invisible illness to those around you visually…
This morning I woke up at 4 am with the start of an excruciating episode of stomach pain (only too familiar to me). I lay waiting to see if it would escalate while praying that it wouldn’t. However, that was a futile prayer because sure enough, it was one...