Last week this topic popped up everywhere. I have been fighting the ‘it’s all in her head’ for years, and had such stunningly similar experiences. Several patients with MCAS have gone public, and said ‘NO. This isn’t okay. I’ve had enough. This is utterly illogical. It is cruel. It is wasteful of human lives and healthcare dollars. And it is NOT okay.’
I have been denied epinephrine while having an anaphylactic reaction, and had it intentionally delayed at other times, until long after it should have been administered under even the most conservative guidelines. If I go into a hospital, I have epinephrine either in my hand (if I trust them) or tucked under my tush where I can grab it at all times, and it won’t be easily taken from me. It was held back to ‘prove’ that I was faking it. You can’t ‘fake’ cardiac arrest folks. And yes, I can be that allergic to rice. And I am NEVER going to leave the control about whether or not to give me epinephrine to anyone else, ever again.
I have been getting rather overwhelming messages from the universe the last few days. Messages saying ‘This has to be dealt with. This is holding you back, you can’t ignore it any more. You have a duty to others who have gone before and will follow.‘ This is the cherry on top. Those physicians, the system, whatever the factors, those doctors didn’t do this to just me. They did it to us. And it’s getting worse, not better. I don’t have a fully formed plan, but I can no longer ignore this.
Physicians believe a colleague over a patient (even if they know that that colleague has behaved inethically before). What a colleague says over-writes medical journals they’ve read, or something that they have seen with their own eyes. It’s such a surprise to those of us who naively thought that our lives were more important than our doctor’s personal ego…
‘Factitious’ disorder (Munchausen’s) affects less than 0.1% of the population. Somatoform, maybe even as high as 1%, depending on which definition you use. MCAS affects about 10%. As this author so adeptly said she didn’t go to medical school, she studied logic. I loved Philosphy of Logic class at university. Maybe they should require a logic class for med students… My eight year old can tell you that that doesn’t make any sense.
I’m riled- I could regret saying more… I’ll save it for another day. Many of us have hit a turning point. ‘No we ain’t gonna take it…’