Thank you 608/609/610 (I think those are the district area SDF responders who have been so helpful…read moreto me. You've been so kind to me. I'm very tired. It's exhausting to live with an extremely rare disease (1:1Million) which doctors in each ER has refused to even named despite my near decade journey to attain the $100M dollar drug of which my insurance pays approx. $800K a year, and that is just ONE of the many Rxs I take in a cocktail to keep me alive. When I arrived in Scottsdale I became on of the first 75 in the nation to attain the drug knowing I would have died if I had not gotten it. Or as Honor Health would call it, "Isn't this just anxiety?" as I would wall-walk, falling, or as they would shout at me, ridiculing me with a Prolonged QT and K+ level of 2.9 as I hit the floor with "thought I heard a thud!" Thank you for not treating me with dignity. The county removed that from me as you know by allowing my neighbors and management write long letters about me as my ambulation did not seem "real" and the disease seemed "fake" (despite my medical story having been published more than once and despite my work as an ambassador to a Swiss Lab with leading researchers; it's astonishing that people with HS educations were able to give medical and mental health evaluations to Adult Protective Services, having me taken away, therefore determining the quality of my medical care in the country, despite my medical records saying, "she has not mental illness". The Orphan drug I'm on a patient can't be on if there is a history of mental illness. But why would my life matter when APS could go to people who only knew me a few months ago and they themselves were drunk, on drugs, and as your former Captain Rose knows, violent, as he took me to the Mayo ER after I was knocked out cold by two of them. That's when I was accused of being a drug addict and drinker. I will never forgive myself for moving to Scottsdale and it's "crime-free drug- free " of violence, drug use, White Claw drinking in they daytime drinking poolside drunks who have had more agency over my body than me. The last years of my life destroyed by asking for help and living with integrity.
Gratefully as I told the Special Agent who went over the secret file I was given that helped my understand why I have been so profiled and harmed (despite my being hired after weeks of interviews by an actual profiler (Robert Pekham FBI profiler) and the kind agent who did my State Dept clearance was as baffled as I was why neighbors and management had the power to interfere and hurt me, "We have your medical records." He took this back to D.C. Meantime my health continued to crash.
And my spirit has been broken by the cruelty of it all. But through it all as I have fought for my life, the Scottsdale Fire Dept has shown up to help as the worst moments. Until two weeks ago as I lost my urine and lay on the floor in my own pee, needing to crawl.
I have a heart monitor on right now. I'm hoping to find-out why the severe episodic syncope paralysis with loss of speech. The heat is now here. I will touch this disease out alone. As poet Rainer Maria Rilke once wrote, "When at bottom and in just the most important things, we are unutterably alone..."
To all the members of each crew of SDF who has helped me, I am forever grateful for your compassion, kindness, caring, humor, and decency. You've helped me survive this awful, genetic disease everyone else wants to deny is even real.
Thank you Michelle and Olana for all your kindness and Samantha too.
