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, January 29, 2017

Fear of mental poor health

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I advocate for good mental health at work. My school has won awards but I remain afraid to speak freely of my struggles at school. Partly b...
Thursday, January 26, 2017

Booked

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I did it, I've booked it. Terrified. I need to actually go this time Don't I.
Wednesday, January 25, 2017

Why am I afraid of therapy?

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I'm lucky enough to have a coach. I need it. She is a fantastic woman and sees, enables me to see. Even the uncomfortable truths and hel...
Wednesday, January 18, 2017

Sleepless and Ofsted

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The alarm will go off soon. I've been awake for at least an hour. Things are sad here in my head. I'll go to work today and hope I ...
Sunday, January 08, 2017

What is coping?

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I saw an old friend this weekend. We hardly ever see each other, barely contact one another but we slipped into the chat. The comfort of som...
Monday, January 02, 2017

2017 with self made family

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What a lovely pleasant affair we had this New Year. It would have been improved sightly if three women I love had made it to give me a kiss...
Monday, December 26, 2016

I think I need you

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Tonight...  I think I need you

Feminism finds itself trapped

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Tonight I sat speaking to a woman who I have a peculiar respect for. She is woman who dances between power and weakness. As with many of my...
Saturday, December 24, 2016

Easier to be terminal

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As I sit listening to the songs of Christmas eve I find myself envious of those who know their fate.  I have forever sat on the cusp of dea...
Friday, December 23, 2016

Christmas

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Another one. My little girl is excited and that's the important bit. I think, all things considered though that Christmas just won't...
Wednesday, December 21, 2016

A pretend friend

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Recently I've been having a hard time at work. I've had to adjust my trust radar a few times. I trust easily and 'over share...
Sunday, December 11, 2016

Letter to my little girl

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I'm not sure if I've posted this before but I was tidying up my dropbox and came across the letter I wrote to her, to keep if the wo...
Tuesday, November 29, 2016

Pride in my latest list

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I got a letter in the post today, 5 months after my clinic and I got my VHL list through. I love reading my list. You might think that st...
Thursday, November 24, 2016

Depression

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I'm not depressed today, I'm just really pissed off. But I think I was, I think that the feeling of despair was one that took me ov...
Wednesday, November 09, 2016

The end of the world

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Today Trump got in, it's frightening. So much of what is what I hold dear... In danger
Monday, November 07, 2016

Flash backs

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I wasn't sure if that's what was happening, but I think it must be. For most, flashbacks come from a traumatic event. Maybe there ke...
Sunday, October 30, 2016

Bout

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https://scontent-lhr3-1.xx.fbcdn.net/t31.0-8/fr/cp0/e15/q65/14876544_1323289851035448_6522981114112102614_o.jpg?efg=eyJpIjoidCJ9
Friday, October 28, 2016

I hurt all the time

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It's about finding ways to not feel it. And when work was good and fun that helped. When my child is happy, so am I. When I'm dis...
Thursday, October 27, 2016

Roller derby come back bout

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Less than a year from my last brain surgery and nearly 3 and a half years after the first time I did it, I'm about to take part in my wr...

Dad's reawakening

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The fact that he hasn't done anything for so long means that I find it truly amazing that he decided to do more. And in true style he g...
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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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