I’m laying here, unable to sleep as usual, thinking about how hard it had been for me to find doctors that want to be diagnosticians – doctors that want to try and help me figure out what is wrong with me – doctors that want to think outside the box (not horses, or even zebras…I’m talking EMUS!) – doctors that think that I have some worthwhile life left to live at 49.
Yes, I have a great PCP. But I’m new to her, and in the past 6 weeks we have had some very lengthy email exchanges. She doesn’t quite “know me” yet – I get the feeling that she’s still trying to navigate my moods (which range from Pessimistic – wallowing in the Pit of Despair, to Frantic – being consumed by the Pit of Despair, to Optimistically Pessimistic – I am very familiar with the shit in my Pit, and i DOUBT that the Thing outside of my Pit has any worth.)
My husband thinks I will scare my sweet PCP away, Evil Thing that I have become…thanks to my untreated ANS dis-whatever!
“We” cannot find doctors to treat me. If “we” do, there are 4-6 month long waiting lists, appointments are triple booked….each body part is treated by different specialist, and of course, none of them communicate with one another. How delightful! This is why I need YOUR HELP. With YOUR HELP, I will start a webpage that lists all the doctors that have successfully diagnosed and treated every dysautonomic, spoon, POTSie and anyone suffering from any incarnation of an Autonomic Nervous System Disorder/Condition/Dysfunction ever known.
I know this has been tried before on certain social media sites – but something needs to be done NOW!
I am at the end of my rope.
No human being should have to go through the humiliation and agony of being misdiagnosed and tossed aside by physicians as if you were a piece of trash. No one.
I will make a webpage that can guide people to doctors that specialize in ANS disorders that will help diagnose their symptoms and not placate them with platitudes and frivolous dx’s of “anxiety” and “dehydration.”
Now that I think about it – I will make a webpage with recommendations of ALL the fantastic, helpful, and understanding doctors that have been helpful for the conditions that I have suffered with.
If you hear me – if you understand this frustration and have sat in the bottom of the Pit of Despair thinking there is no way out…… Then PLEASE share your doctors’ demographic information with me so that I can create a true HELP Page for people like us…
Just think of all the people you will be helping…and possibly saving…