So, what do you do?

Being this sick is a full time job. I jokingly refer to myself as a professional patient but it's really more true thanl, anything else. Every moment of my day, waking or sleeping, is permeated with medical procedures and equipment. I have 3-5 appointments or interactions with medical professionals in any given week. 

In order to survive with complex chronic illness you have to become an expert in your own body. You become a diagnostician, your own nurse, your own dietitian. If you are lucky you are able to call on actual professionals to consult. My medical team has expanded to include a dozen providers and paraprofessionals too numerous to count. 

And still there is but one ultimate expert at living in my faulty meat suit. I have been traveling in this body for 40 years. I know every detail of its aches and pains. I know the depth of feeling carried in it's neurotransmitters and electrical impulses. I have come to trust my own knowledge above that of any doctor. I will accept and utilize their knowledge but they do not decide for me.