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.

Monday, February 15, 2016

I thought I had a lot to say

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Have I really been changed or am I simply already back as I have always been? What makes me happy, should I be striving for that or are we ...
Monday, February 08, 2016

A different body

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I've been back at work almost a whole half term. My body is getting used to the stress and strain of the job again. Lots of walking, lo...
Thursday, January 21, 2016

Who would be a parent

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I refer you back to 'Be the Verse' so painfully true. It does me good in my role as a teacher to be on the other side, to sit in ...
Sunday, January 17, 2016

It's snowing

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There is snow on the ground, I called for my daughter to come and see it, I still get excited at the first real snow of the year and so did ...
Sunday, January 10, 2016

It's all about me

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What a week, much like others I have had but still I think remarkable. I went back to work and survived, but the bit that won't leave me...
Monday, January 04, 2016

Phased return

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Last time I went back to work after surgery it was quite straight forward, I'd only missed 3 weeks and my job was much more contained. I...
Tuesday, December 29, 2015

Last Christmas I gave you my heart...

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What a year, as always... many people write something in your Christmas card along the lines of have a great 2000 and, the next year hoping ...
Saturday, December 19, 2015

Counting blessings again

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I'm crying, I feel very low and I have some minor silly things that are of little consequence running over and over in my mind. I can...
Wednesday, December 16, 2015

Where am I now?

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The recovery feels slow, still. I thought I had a lot to say today but now I've started to write I've lost the inspiration. maybe...
Saturday, December 05, 2015

A lot of time on my hands

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I am looking forward to going back to work, 4 weeks since surgery and feels time to go back, I need to take my time as I know I want to rush...
Friday, December 04, 2015

Stiff neck

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I look back a week and I know I must be getting better, goals reached toilet on my own dressed myself bath got out of hospital climb...
Tuesday, December 01, 2015

counting your blessings

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I'm alive, a good place to start. I'm able to take and pick up my daughter from school. My work are being really supportive and I do...
Saturday, November 28, 2015

getting better

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Today I feel largely frustrated that I'm not yet myself. I feel sick and my head still hurts and I'm wobbly and weak and my hair loo...
Friday, November 27, 2015

survivor?

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It has been 3 weeks since my surgery and I feel rather disappointed that I don't feel better. I expect a lot of myself. None of this h...
Monday, November 09, 2015

In hospital

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Turns out that I felt rotten for VHL related issues as well as others. I'm typing on my phone from HDU as 3 days ago I had brain surgery...
Monday, October 12, 2015

A sad and hard day

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One of our students died yesterday, she had ongoing health issues but none that should have caused her death. Today was hard and exhaustin...
Sunday, October 11, 2015

'Be the Verse' Philip Larkin

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http://allpoetry.com/This-Be-The-Verse This poem was introduced to me by my big brother. I thought him so important and clever even before...
Saturday, October 10, 2015

Am I strong?

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"You're so strong" "You're one of the strongest people I know" "I don't know how you do it." an...
Friday, October 09, 2015

Still waiting

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Ah, it burns. So much waiting, this is also part of the curse of VHL. There are so many things that VHL takes from us and our families. It ...
Sunday, September 27, 2015

Applying for funding

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It might be that they (the NHS) have to apply for funding for treatment every time but I know about this one. I know that I'm expensive....
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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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