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 03, 2009

No new nasties

›
It is a pleasure to say that I've just got back from my annual review and I'm able to happily ignore the twinge I had and the always...
Thursday, September 24, 2009

eyes and eyes but no one is looking

›
just that I notice it and I notice it every day. Nothing will change I suppose. ummm
Friday, September 18, 2009

contradiction

›
I watch 'Ugly Betty' I know but it is escapism. I have hiccups right now and have decided to watch ‘House’. This is my Friday night ...
Wednesday, August 12, 2009

We love the NHS

›
If you do, and you tweet, please join the #welovetheNHS tweet spectacular my eye tumour is ok, my dad is ok things are ok
Monday, July 20, 2009

More news

›
A ridiculous week. Firstly my daughter turned 2, a big event for me and her. My eye is going to be fine, yes it bled, no need to do anything...
Tuesday, June 30, 2009

I was right

›
So an afternoon in Moorefields Eye Hospital can confirm that my tumour on my optic nerve has been bleeding. I'm back home and feeling fi...
Sunday, June 28, 2009

eye eye

›
I just left a message with Moorefields eye hospital asking for my man to contact me, because the last few days I've had a dark streak ac...
Wednesday, June 24, 2009

who am I

›
My dad is still alive, and I'm glad of it because maybe he wants to be alive. But his desire to end it all has made me wonder who I am. ...
Tuesday, May 19, 2009

Working Hard

›
I have a new job, well the same job but in a different school and as a result I'm sitting here with very little to do. That's becaus...
Monday, May 18, 2009

running running running

›
My sister plans to run the 2011 London Marathon in aid of VHL. I don't say it enough but she is amazing. Sometimes it is easier to noti...
Saturday, May 02, 2009

A strange week

›
I feel so sad and a bit worn out. I think I may have under played how bad my dad'sa health has become perhaps not. What I haven't sa...
Sunday, January 11, 2009

A weekend home

›
I spent a weekend at home, we had a little Christmas because now I'm a mum I have to share her around. It was easier this time because s...
Friday, January 02, 2009

My beautiful girl

›
She fills me with joy 
Friday, November 07, 2008

Kidney

›
It was that time of year again, I expected to wait a long time to be seen but I wasn't worried because I'd had a letter, nothing new...
Tuesday, September 02, 2008

my turn?

›
Tomorrow I have my annual MRI scan, it is usually a long one. I feel like this time I might not get away with the - I was getting used to ...
Sunday, August 24, 2008

Crosswords

›
My Dad is in again, it feels like he has been like this for so long but really it is only 18months and it is steadily getting worse. So much...
Friday, May 30, 2008

caring

›
The last three weeks have been difficult. I’ve been to the various hospitals that plan to look after my dad and I’ve cared. I hope and pray ...

It ends here

›
I remember when I was a teenager and first embarking on a serious sexual relationship when I realised (or was reminded by my parents) that g...
2 comments:
Wednesday, May 14, 2008

So ugly

›
It has been a while and VHL has grown so ugly. My father has been in and out of hospital and each time it is worse and more horrid. No on...
1 comment:
Friday, January 25, 2008

my baby girl

›
i know it is sideways, you'll have to turn your head. She is on her granny's lap.
1 comment:
‹
›
Home
View web version

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?
View my complete profile
Powered by Blogger.