Open Letter To The World;
It Is With Deep Sadness Yet Life Affirming That I Tell You;
I was given a terminal medical diagnosis on Monday August 16th because of my highly rare medical condition that I was born with. They don't have a timeline but it could be months or with my fighter spirit a year or two(at best). So I am trying to figure stuff out. A combination of my rare medical condition, surviving two cancers (in my 20's) then a stroke 5 yrs ago. My body has worn out, so no known cure. I can no longer eat food without it hurting and will be surviving off feeding tubes. IV meds slow it down but will not stop it. I have lost too much weight in a short amount time and it has sped up the deteriorating of my internal system.
So I don't know an ETD..! I am planning on achieving my checklist/bucket list..! I managed one the other day as I performed at an open stage comedy club. Then walked 20km across Edmonton with new friends. We played in a water fountain at 1am sat up until sunrise eating M&M's(which hurt but I didn't care).
I will have to figure out how to finance my road trip but I will figure it out. Lulu(my dog) and I still live full time RV'ing. We are about to launch a new podcast "Chaos on Fire" which is fitting for now. I will coordinate with doctors along the journey. But I plan on living life for whatever I have left. It will include a few adventures along the way. I am an outgoing person who lives as a Kindness Warrior. I want to go out inspiring others and living free...I am also the team captain for the #EmotionalSupportGISHers. I love GISHer dearly and their mission is beautiful chaotic weirdness. If I am allowed by GISH admins I will continue on following you all as long as I am still on this earth.
I plan on living as full as I can making feeding tubes & IV's sexy{giggling}... It Makes a difference when you are told it is life affirming and a permanent outcome. Love you all and will support from the sidelines everyone..! /Deb Scaife{Burgess} 2021-08-22
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