Diary of a Genetic Defect, VHL, Von Hippel Lindau

An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.

Sunday, February 25, 2018

You can't unsee it

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I don't recall who helped me see a moment of truth this week but I think it's stuck now. Here, there is obviously and obvious pover...
Friday, February 23, 2018

While I'm swimming he's drowning.

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I feel a lazy sort of guilt right now. I'm sat reading, g&t in hand and looking over the lake. Like I've run away. Which I think...
Friday, February 16, 2018

Start of the half term

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Which means I'm half way through my first year here and it's gone so quickly. It feels very normal too. I've had a few things t...
Wednesday, February 07, 2018

Who can you trust.

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Messages from home. Fear and distress and the wolf in sheep's clothing is being seen for what she is. And yet I can still sense that so...
Sunday, February 04, 2018

The importance of sleep

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I'm sipping tea, listening to one of my favourite podcasts and thinking. And despite the ever present undertones of anxiety and self lo...
Wednesday, January 31, 2018

Facebook and my mother

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Twice in four days I've read a post from my mum that states my dad has been close to a crisis. Both times the way I found out not all wa...
Tuesday, January 30, 2018

Going for it and not getting it

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It was worth a shot, but it certainly has left me frustrated. I'm good at seeing ways to improve things. I care about students. Doors ...
Sunday, January 21, 2018

Hidden disability

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I've started playing ultimate frisbee. We do this as a family. I'm not as skilled as most people, I'm a little unfit at the mom...
Wednesday, January 17, 2018

Being a little inspired by missing home.

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I felt terribly homesick this morning, this has been brought about by my mother's insistence that I come home this summer followed by a ...
Sunday, December 31, 2017

Good bye 2017

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You've been a strange year. In 2017 I've been at an all time emotional low and felt like my life was destined to be rotten. That I ...
Thursday, December 28, 2017

Hugs

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My husband and I binge watched a harrowing TV series this week. In it hugs were mentioned, used and perceived in various ways. It had to be ...
Saturday, December 23, 2017

My boys

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How do you write about them? My boys, the ones who got mixed up in it all. One definitely missing and one definitely dead. My boys. I wis...

The email

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Dear hammer legends and woe defeaters  I wrote to you about 18 months ago thanking you for being part of what saved me from the horribl...
Saturday, December 16, 2017

Swimming with the sound of hippopotamus

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I've never had a December like it. Today I'm living my life. And I have been as much as I can for as long as I knew I had to. It...
Monday, December 11, 2017

Christmas in the rainy season

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The images from home are full of snow and here we are in the rainy season. A huge contrast and reminded me of the contrast in my Christmas ...
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Friday, December 01, 2017

In a show

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I'm in a pantomime. I'll up date you!
Tuesday, November 28, 2017

Probably nothing

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The panic has subsided, a problem shared! The pins and needles isn't daily and most likely more about a stiff neck due to exercise. But ...
Monday, November 20, 2017

The confession

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I'm considering applying for a job. I'm unsure if I should. The current lack of work stress is nice. This would potentially change t...
Monday, November 13, 2017

I just can't get to sleep

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I'm not going to post this straight away. But I can't sleep. I've let someone I care tremendously about know this blog exists a...

To be or not to be

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A simple question. Because I'm a to be. No matter what. I've considered the 'not to be' talked my way into the who would hur...
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About Me and VHL (Von Hippel Lindau)

diary of a genetic defect
I have Von Hippel Lindau disease. Some call it a cancer. I think this is misleading at the moment. I have a few tumours and have had a few operations too. I live with it. What other choice do I have?
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