I got tired of the word “hell”, but this was a great video. Any woman with a rare disease can probably relate. I just love when I am in the ER and hear the docs saying stupid things like this. There are at least 7000 rare diseases. No doc is going to know them all. POTS isn’t even all that rare.
I am still seething about how I was treated at the level 1 trauma center ER. Just because that one doc said I didn’t have MG, instead of being helped, I got mocked and ridiculed. This happens ALL THE TIME to women. I know many on the internet who have been through this condescending treatment. It’s why we HATE going to the ER, no matter how sick we are.
I have dysautonomia. POTS is one form. I have other forms. My dysautonomia was made worse by West Nile Virus. Seems to be common among those of us with chronic WNV. The worst of that, for me, is gastroparesis. The redness and heat in my hands and feet is from erythromelalgia. At first I was told I had erythermalgia, but that’s just another name for the same thing. That is also a part of dysautonomia. I know, I know, most of that is too complicated for most people. Just be glad you don’t HAVE TO understand what it all means.