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.

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...
Saturday, November 11, 2017

Living your best life

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There were so many reasons to move. Today I sat with someone I've only known a little while and confessed to a snobbery I have. We talk...
Thursday, November 09, 2017

2 years hence

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And Facebook knows. So do I.
Sunday, October 22, 2017

Pardon?

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A common dad joke, anything to do with hearing and my dad would always say, Pardon? He can't hear at the moment. Pardon? Yes, you hea...
Thursday, October 19, 2017

#metoo

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This hash tag has come at a time when I am strong enough to own it. Oddly having just experienced another incident. A drunk old man. The sho...

Being a parent from a bed

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We're on a beautiful half term break and I got food poisoning. A day of being in bed, in-between the inevitable trips to the toilet!  ...
Sunday, October 01, 2017

My dad, my hero

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The man I knew as my dad as a child has long gone. For a while a shell existed where he has been. I think though that this new dad is real...

I can't have a baby

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I love my daughter, she is our surprise and delight. I wanted more, I don't admit that often. No point. But I get a pang of jealousy w...
Wednesday, September 06, 2017

Tears

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My little one has her first day at her new school today. She was excited when she left but a little overwhelmed by it. The reality of us be...
Friday, September 01, 2017

First proper day at my new job

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To go from being in charge of so much, to now so little is strange and healthy. Yesterday I happily finished a meeting and went home, cooked...
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Sunday, August 27, 2017

Malawi

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And here we are, a few stressful moments but 3 days in it feels good. Feels like the right choice. Live each day. Some of the worries have ...
Friday, August 18, 2017

Saying goodbye for now to my dad

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It's never comfortable for my dad to travel these days, it's hard for him to get about but he does it anyway, when he can and for a ...
Wednesday, August 16, 2017

Turning 39

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It's another year and another achievement. Getting here. According to that fateful letter I've got 13 years left. Better make the ...
Monday, July 24, 2017

Dubious and misjudged?

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Mental health is a fashionable topic, impact on stress, work related or otherwise. In my last year at my last school I was told that some...
Sunday, July 23, 2017

The residue of pain

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Term is over, and so to is my time at that school. I left with a sadness and sense of defeat, I felt a bit lost and, although loved by so m...
Tuesday, July 18, 2017

10 years of love

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My little girl turns 10. She is my joy and my heart. When people discover I have VHL and that it's genetic they often ask... And your d...
Saturday, July 15, 2017

Forum or not to forum

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To not feel alone, no one really is anymore but when you see others with the same disease with you share you know you're not alone. But...
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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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