Chronically Clever

The medical assistant when I miss my doctoring appointment...

Great work. I loved it. Belated like a year. You all should go read that.

I got a viral GI infection at age 12 and never got better. My colon failed first and then I developed autonomic dysfunction. I wasn’t diagnosed till 10 years later. Pre-diagnosis, throughout my teenage years, I was wheelchair bound, on TPN, had feeding tube, ostomy bag, daily pain medication and couldn't eat. With treatment and diagnosis I began walking, eating and living. I am now in a treatment resistant flare and have been for months so things have gotten worse again but I still function much better.

I am an ER nurse and have seen what a futile code is like. I understand that if my body has decompensated to point of arrest that I, with my illnesses, will have an extremely hard time recovering. My worst fear is to end up intubated again. I have a medical alert necklace and keychain stating my wishes. 

I have hyper-POTS secondary to immune mediated autonomic neuropathy so my presentation may be a bit strange, often antoimmune disorders are. I get flares/exacerbations and then it wanes. I will have strings of days during flare ups where I can not change position to standing or remain standing for any period without fainting. Nausea and vomiting with prolonged standing always occurs for me even outside flares. The hyper part of hyper-POTS means I have increased norepinephrine levels and my BP is very unstable. I can be extremely hypertensive or hypotensive with position changes or during a flare. I always have a high heart rate. Hyper-POTS is not as common as classic POTS.