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, April 18, 2021

what's wrong with your hands?

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Why can't you catch? "Oh, that's a long story" I replied Then felt my face fill with tears and, not for the first time, co...
Monday, April 12, 2021

freedom

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This morning I woke up in a lazy mood, I was simply thinking about the fact I don't have to do anything today. We are away and me and my...
Friday, April 09, 2021

hearing no

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 I had a moment, suddenly seeing something I have read about and always thought, how could anyone do that, I don't understand.  It was a...
Saturday, March 20, 2021

jab

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It was a strange way it happened, so typical of here. A message from a friend, a tip off and a lift. A hurriedly scrawled sign and a tent fu...
Monday, March 15, 2021

today is the day

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 forever burned onto my soul, the day we switched him off, the day he died in body and I pray only that. I hope that three days earlier he h...
Wednesday, March 03, 2021

Marching through March

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 The month of death. And although each year it has blissfully stayed just two people... one i knew and loved, one I had hoped to, it really ...
Wednesday, February 24, 2021

Lucky to have time to say goodbye

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 Another live streamed funeral today. It is becoming an art for some and not so much for others. It is important to say goodbye and to know ...
Saturday, February 20, 2021

he's another year older

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 this year I felt very far from home. There isn't much you can say after so long, but knowing I don't know him anymore and forgettin...
Monday, February 08, 2021

distracted by greif

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I burnt my hand. I knew I would. It's often described as shaken, the news shook me. I took more Hydrocortisone.  I called him my uncle. ...
Saturday, January 30, 2021

gifts make memories

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 I'm not very good at buying gifts. I try but I over think some, under think others, am often crippled by the need for it to be useful, ...
Saturday, January 23, 2021

a full bin

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 There are moments when you realise that the mundane is such a joyous blessing. Because I tested positive for COVID but my husband and daugh...
Tuesday, January 19, 2021

A seasoned self isolator

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 having spent many a week or two or more in hospital I'm very used to my life suddenly reducing to the size of a small room, ward, hospi...
Sunday, January 17, 2021

Being one of the stats

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 I tested positive for covid, I join the millions, billions of people who have. I feel a little fraudulent though, a slight tickle in my thr...
Saturday, January 09, 2021

The honeymoon of post scan results

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 I make the same health promise to myself quite often, I've done it for a large part of my adult life and at times I actually commit and...
Saturday, January 02, 2021

2021, hi, how are you?

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 Nearly the end of the holiday, it's felt long and mostly restful, I felt profound yesterday but didn't get round to recording my th...
Saturday, December 19, 2020

I was right, Macbeth wasn't

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 all is well in the state of my body. (mixing my Shakespeare references a little but you know...)  As well as can be expected given the list...
Thursday, December 17, 2020

Tomorrow, tomorrow and tomorrow

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 When Macbeth said it, he was feeling rather gloomy.  I'm rather optimistic.  Let's see who was right 
Tuesday, December 15, 2020

18mm

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We have a friend on campus, who, no matter why a reference to size is mentioned, will inevitably make a joke about the size of his willy, or...
Saturday, December 12, 2020

waiting with twitter

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 At some point my twitter and my blog will converge and I wonder if I'll then do a kind of double entry...  anyway this morning we are h...
Wednesday, December 09, 2020

a newbie again

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I wasn't sure where to go, what I needed to take or how to fill the forms in.  My husband came, my daughter came, that helped by hi t go...
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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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