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.
Friday, May 31, 2024
you left the chat
Tuesday, May 28, 2024
inspiring
Sunday, May 12, 2024
The time flies
Those of us who have a long MRI know that when you just need one bit done the time flies. Using the counting of breathing in and out and holding, creating a welcome distraction from why you're in.
The thoughts otherwise wander all over, some might be able to mediate, I talk myself out of the worry and fear, the reason you're there called into sharp focus. The habitual prayers I say to ward off the potential growth. That's blind faith isn't it, that through that prayer perhaps somehow they shrink or disappeared. At other times I shift out the memories of surgery and difficult recovery days.
Convincing myself I can taste the contrast fluid, the instruction to drink lots for the next few days to flush it out. Oh if only we could eat or drink something that would flush out VHL.
Just how much kidney can I live with, just how many surgeries can this body, forever aging, take? Should I be doing more?
And then home. To wait and do my very best to ignore it all.
Saturday, May 04, 2024
scan coming up
Just of the abdomen and just routine and just part of the routine and just what happens. This is VHL awareness month - well rare disease but for me that that. Just another one rolling around.
Just a time to wait
Just a time to worry
Just a time
Just a
Just