Is anyone aware?

I would be willing to bet that if you asked 50 random people on the street what Dysautonomia is, or what POTS is for that matter, they wouldn't have a clue what you were talking about.  What upsets me even more is that I could come up with a list of pretty close to 50 people that I have encountered just the DFW area that are affected with this invisible illness.  So why is it that no one knows we are here?  I'm not talking just talking about random people...I'm talking about doctors too!  Throughout the course of my illness I have made several visits to the ER.  Every time (with the exception on one) the doctor has had no idea what was wrong with me.  It has become my job, someone who has never spent a day in medical school, to educate my doctors.  I actually had one doctor that when I asked if he knew what POTS was responded with "No, but I can google just like anyone else."  Really???  That's what you get paid the big bucks for?  So, because no one knows I suffer and so do so many others.  I have one doctor that treats me for my POTS here in Dallas.  To my knowledge, there are two others that treat the illness in the area as well.  One only treats from the pediatric side and I don't think I have found the other.  I have met people in my doctor's office that travel from across the state to see my doctor simply because there is no one else!  My primary care has no experience with the illness and neither do any of my other doctors for that matter.  I had to beg a paramedic not to give me nitrates (because he thought I was having a heart attack...which I knew I was not) on my last ambulance ride.  After he pulled out his nifty portable laptop and googled he said "wow, you're right that would have been really bad for you."  What if I wasn't able to get the words out?  I don't even want to think about what could've happened to me.  Well...now my only doctor has pretty much wiped his hands of me.  We have reached a "dead end" he told me.  You really need to go to Mayo, I am not giving up on you but we are really at a stand still until you see them, he tells me.  What he fails to mention is that the Mayo clinic has a several month waiting list.  So what am I supposed to do in the meantime you ask?  Apparently nothing.  He doesn't know what to do.  So, when I went into extreme chest pain Thursday morning, which was the same pain that put me in the hospital last week, I was curled up dry heaving into the "puke bucket" that is now a permant fixture beside my bed my POTS doctor told my husband to call my primary care doctor to treat my chest pain.  My primary care doctor that doesn't know very much about POTS and like most doctors are scared to touch me because of all of the meds the POTS doctor has me on.  But that was his solution...really???  It was obviously POTS related but he has given up on me I guess.  By the way, we're still waiting on the call from the doctor my husband requested.  What would happen if I had that attitude?  If I just gave up when things got hard?  I'm here to tell you God hasn't given up on me and I'm not giving up on myself!  Somehow, someway I'm going to make a difference.  I may only be one person...but I am one determined person.