Why DO I write about my health (and other healthcare topics)?
1. I have health conditions that are not typical. I have been misdiagnosed since I was a child. Every accurate diagnosis would not have been made without tireless advocacy, research, letter-writing and numerous doctor visits – since I was 18! THIS IS LUDICROUS! Patients shouldn’t have to resort to campaigns of this magnitude to be diagnosed properly.
2. The insidious increase in non and quasi-governmental agencies trying to tell our healthcare providers and health insurance companies how and when to treat their patients. These agencies usually refer to some form of “evidence-based” statistical methods that results in the grouping of patients into a few categories based on their possible illness, with suggestions for treating each category of illness. This leaves hundreds of thousands of people that do not fit into these tight pigeon-holes without “evidence-based” treatment alternatives. These form a basis for insurance coverage denials. I know this firsthand for experience. I am facing this again with a new diagnoses I received as an early birthday present – Dysautonomia (aka autonomic orthostatic hypotension). I don’t fit the mold for the typical patient, so I am left without treatment – AT ALL. More on this in upcoming blogs…
3. I think people need to hear the realistic side to having certain conditions. I do not believe in the rainbows, bunnies and sunshine coping blogs that so many write. This is not reality – also, why write if you can cope? For extra attention? We all find our own ways to cope – and not everyone has the loving family or immense support system or the large reserves of $$ to “cope.” I have never been one to be helped by hearing about how, for example, a certain Miss America “got over” being sexually abused as a child. That was smashed into my face for years by therapists, and worst of all -my mother. The strong message is, if She could cope and “get over it” – why can’t I?
4. I strongly believe that patients have the responsibility to learn about their health conditions and not rely solely on what a health care professional tells them. Quite often, these health professionals do not stay current on research and developments in their fields, while holding themselves out as experts. Had I blindly listened to what certain doctors told me, I would: a)probably be in a wheelchair or unable to walk unassisted, and/or b) required to catheterization myself 4x daily to urinate. Both of these are life-altering issues. Prevent malpractice – become an educated patient!

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