Wow Tree69 (interesting name btw)
I'm interested in this book. Very. I know exactly what you are talking about taking an advocate with you. I just fired my rheumatologist after a horrid experience dealing with him and my treatment. And I'm double whammied with lupus and tn, both conditions with varied treatments specific to my personal care (what works for me)
I don't go to the ER for the fear that they'll do nothing and it's really difficult to have to go and sit in an ER during an attack. I can't even imagine. I started getting horrid headaches that put me in fetal position, this is not from TN as far as I know...after the last one the left side of my face went numb. I still did not go to the ER.
I refuse to go unless it's for sure a stroke or extremely serious symptoms WITHOUT A PLAN in place from MY doctors so that I can be admitted, not wait in the ER and be treated in a humane and helpful way.
I'm really really interested in what that should be and how to do it so I can get started on one. It's a great subject I would like to bring up with my neurologist.
For example if my bp is blank and I'm experiencing blank then it is time to go to the ER....and so on...and then when I do blank will be called and I will be admitted ...and so on....
Thanks for the great ideas! Love Julie