I’m Payel! I love books, reading and writing to sum it up ‘knowing’ in any form. I’ve been fighting since I was a child a bizarre disease called VHL or Von Hippel-Lindau in tailor-made circumstances and that makes me a Warrior, not merely a survivor.
VHL is a genetic defect that causes capillary growth to go out of control. While the tiniest blood vessels, or capillaries, usually branch gracefully like trees, in VHL patients a little knot of extra capillaries forms a growth, or tumor and in certain cases it turns cancer. VHL can affect up to ten parts of the body, including the brain, spine, ears, eyes, lung, liver, pancreas, and kidneys.
Hi! I love people dropping by in this Warrior Princess’s life so first of all thanks. .Please put an entry in my Guest Book.
Even though I was born pretty much a hyperactive child, I had problems expressing my feelings and my parents were concerned. I receded in my den with just books and to the imagination of the child, people seemed a living, pulsating raptor ready to pounce on me telling me I’m looking alright so why do I pretend being unwell. That was a figment of imagination of a child but it’s true that with leptomeningeal hemangioblastomas I find it tough to explain what’s going on inside my head, because I don’t understand it myself, it has no words it is a feeling which I feel. My first manifestation ever was brain early on in childhood.
That doesn’t make my brain defunct but the uneasiness, pain of something extra within the cranium sometimes makes me cranky.
It’s not that what you have never seen can’t happen. Learning never stops! Thinking matters. We need to think not just out the box but as if there’s no box. As a doctor, as a society.
Dr A. S. Soin was the game changer in my life. I’m alive because of his swift bold decision. He cared back then, still does. He did provide a lot of enthusiasm in me and so does Dr Saigal. I am grateful I have met such doctors, if they don’t change, I shall be happy.
My combat with Multi-drug-resistant tuberculosis (MDR-TB) with pulmonary, bone and lymph involvement, is highly painful. With VHL or MDR TB pain has no marker, no limit.
There’s no a marker to my feelings either which are not bizarre concoction of active mind.
I am a mighty reader and books are my life. I am one of the handful persecuted minority of super-rare chronic disease.
I moved forth without regression with cadging from friends, well-wishers and personal contributions. I am not willing to give up.
Funds are tough to come by, I had expensive kidney cancer surgery and radiation therapy this year. My younger brother being the sole breadwinner, I need a supportive system of friends to help me to continue the surveillance and any treatment needed
Thank you for reading.