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.
Wednesday, September 14, 2022
I'm a really good person
Sunday, September 11, 2022
building and trying to ignore the worry
the scan... the size and the 'lots of white on that' feeling.
the disc was sent off a little under a week ago. When will I hear, when will I know?
and then... what will it mean?
I hurt myself the other weekend, I hit my right side on a shelf, it hurts, it's getting better. I have had to talk myself out of deciding I've done permanent damage. Popped the cyst!
It's on my mind.
Wednesday, September 07, 2022
3am worries
I gave my physical scans to one of our biology teachers, we held them up to the light to see what they looked like.
'That bit' I pointed to the large vivid white circle where an adrenal gland probably used to be - 'that would be the...' I stopped, I didn't know what to call it. cyst, tumour, cancer, so I mumbled a little and talked about MRI scans and contrast. I couldn't remember
gladioli - no, gladiminium, errmm,
it's this Gadolinium contrast
I of course then couldn't really get the blob, not the only one either - out of my mind. A ticking clock, definitely growing but maybe not bad stuff growing. I wish I was an expert.