Lisa ,what you went through is absolutely horrific
I think what you are doing as a result - ensuring that people get good quality medical care is great/necessary and it shows that the trials and tribulations of life can bring us a new purpose and life goal.
I think the disconnect here comes from the fact that RSD is one of the most under diagnosed and/misdiagnosed conditions in the medical community today.
Many of us have gone from one doctor to another without getting any answers to our litany of symptoms; and sometimes much to our surprise come away from these appointments with blank stares of disbelief from these so called experts; and worst case scenario - that this is all in our heads and that we are an hysterical bunch of women( with all due respect to the afflicted men).
So for this little known disease to finally get some press ,and its content is not about it being horribly under diagnosed ,or horribly underfunded ,or just being plain horrible ,but because it was misdiagnosed not once but twice, which I am sad to say is not the norm with RSD well just doesn't sit well with those afflicted.
I am sure you can understand why it is just a little bit frustrating for those that want their stories to be told who feel that your one in a million misdiagnosis' of RSD might in some way do a disservice to a disease that is so little known-so little known that doctors can't even diagnosis it;so little known that newspaper stories make it sound that misdiagnosis is an everyday occurrence!!!!

with much hope and respect that you can help us change this situation as you have been in the trenches even if they were "faux" trenches

GnP