Part 1 of 2 That’s rhetorical! However, my question is sincere and this is why… Having hydrocephalus and enduring brain surgery (repeatedly) takes a toll on you. We never really know what the effects will be. Symptoms, surgery and recovery, may differ with each operation, per person. For those...
Articles with the Tag Incurable condition
Don’t go out without a fight..!
Some days it feels like I’m literally floating through life, day by day. Caught in a never ending loop, facing the challenges this condition imposes. I want and need a break… Faced with the reality that the treatment options, keeping me alive, are not ideal. They fail. They need...
You can get angry, you can get sad but, no matter the emotion; You HAVE to keep going.
I wrote this a few weeks ago, it was meant to be my way of motivating anyone who needed it. But, I never actually got around to finishing it. Now, lying in a hospital bed (yet again), I find it more suited to my own situation. Current state: I...
Do you ever just feel like a waste of space?
In one of my previous posts: “How I cope is much the same as being like a duck”, I talk about the best advice I was given by my ex-manager Ian, after my diagnosis and first brain surgery. I struggled at work, to get back to a version of...
Hydrocephalus and the art of war…
She stood her ground and so did he. They are warriors of a different kind. In the days of war (I can only imagine), facing an unknown opponent, you have no idea what their strengths or weaknesses are. Nor, do you know, what tactical moves they will use to...
Does the world turn its back on you, once you’re diagnosed with an incurable condition..?
I know not everyone will agree with this post, and I’m OK with that. But, I’d like to believe that some of what I have to say, will resonate with people who have actually experienced it. For those who have, I hope this gives you a voice… My humble...
Hydrocephalus sucks! Validating your feelings.
So often I’ve felt a need just for some understanding when it comes to this condition. I’ve reached a point where I know and commit to memory that this condition is invisible and, as such, others around me will unfortunately treat it the same way. They’re simply oblivious to...
Brain surgery cost is ridiculous. This is why.
This post is more about the total cost involved with care, treatment, surgery and overall recovery. I would go so far as to say; aside from the financial cost, there’s an impact on ones mental, physical and emotional state as well. And, under the right circumstances, can have the...
I get so tired of the fight, all it’s detours and juncture points.
It’s not always the same fight but regardless, I’m tired. To quote a fellow Hydro sister: “I know I am here for God’s purpose and He knows my days here yet, I am tired of having to force my physical body to do what my spirit wants to do.”...
Gert Tollesson, “saved my life and…my sanity!”
Gert Tollesson, aka Dr “O”, is the 15th specialist I’ve consulted with regarding my Hydrocephalus. Most of you, who follow my blog, will know the uphill battle I’ve had to climb to finally get to him! And, thank God I have!!! Words I would use to describe him: Kind,...