an overview of my appointment that I just couldn't do before

As many of you know I had gone to see a new heart doctor who put me on a med that actually helped and then he changed his mind because I don't "meet the requirements"

He then said every doctor has there own treatment plan and he told me his would be to pull the port and the feeding tube and play with a bunch of my meds to see what works. He said to be honest I really don't know how to treat you exactly because they always send pots people to me when in reality it is not a problem with the signals in your heart but the signals in your brain so it should really be covered by a neurologist. Which I have done (he was less than helpful.) He also said my "old" doctor Quattromani really has way more experience and she is so much smarter than I am and the BEST IN THE STATE on how to treat pots and that is what you need. He said even though it is a 2 hour drive and that messes with your system it really is your best bet.

I asked him what he thought of a clinic and he said he has no idea which one to even send me to. Here is the kicker for me. He said to be brutally honest you are so young and I know it is hard but honestly there really isn't anymore treatment options. You can see Dr.Quattromani but really all she can do is continue what you are already doing and it would be that way with a clinic as well because we can treat symptoms but there is NO cure at all for your nervous system and despite medical advances (insert Jesus) we will never ever be able to cure a nervous system. It just isn't possible. (insert Jesus again)

So in conclusion he basically said we need to focus on quality of life instead of frantically searching for a cure that doesn't exist. Stop letting the fear of a flare up dictate everything I do but of course be smart about it, if it is a bad day then don't go out and be passing out all over the place. Your body will tell you when you can, should, or shouldn't. For now we are just taking it one day at a time but appreciate all of your prayers because this has been really emotionally hard on me.