»But I do feel my care has been a bit uncoordinated«

Lately I take a "human resources" approach to my health care:

I consider my General Practitioner, an M.D., to be my Vice-President of Health Management. My husband is sort of a co-CEO with me, although I am the senior partner of the two of us as far as my own health is concerned. I serve the same junior-CEO role for him. We both have chronic illnesses that can incapacitate, so it can easily happen that when we need to be our own advocate, we haven't the energy for it. Enter the junior-CEO.

Even though I respect my GP, he is only my VP--the buck does not stop in his lap, it stops in my life and to a great extent also my husband's, since he picks up the slack when I'm unwell (and vice versa). As CEO of my health I am the top dog, fully entitled to bring in whatever other consultants I deem appropriate, from various health professionals to Mudcat. That also means it is my responsibility to help them understand (even if they won't totally accept) each other's presence on my team, not always easy to do!

A GP probably should be quite on top of things--in the strictly medical world he is as much a general manager as anything, the one medical person who gets copies of all the specialists' reports. However I have had enough experience with the medical establishment to know full well that these people are just human beings. A family squabble at breakfast or a dying patient can mean mean bad note-taking for that day. So I always remind him of whatever I think is relevant to a given visit, even if he doesn't happen to ask me. Just in case he didn't read or didn't keep quite good enough notes. Fortunately, he is not one who resorts to blaming the victim.

As far as medical types understanding fatigue or pain or anything else, again, they are human--by which I mean: If they haven't felt it or at least lived in very close quarters with it, no they probably don't understand it. And I don't expect them to. But I DO expect them to BELIEVE me and RESPECT me. Unfortunately that can be scarce when it comes to non-cancer pain. Fortunately, I have a great pain specialist on my team.

Years ago my husband and I had the the same specialist, a jackass IMO whom I soon dropped like a hot potato because I found him to be a "medical chauvinist pig" -- he was inadvertently disrepectful of women in his practice. I know this because a volunteer position I held made me privy to a lot of talk that would never be repeated in public or in writing. Men found him to be a perfectly fine doctor. He was of a generation where many considered women to be 2nd class citizens who may speak only when spoken to.

Eventually due to some sort of illness this doc had to take prednisone and some serious time off work. When my husband saw him after that experience, the doc was a whole new empathetic individual! He had a whole new appreciation for both fatigue and the crazy side-effects of the wicked but sometimes necessary drug, prednisone. They ARE human. We all only know what we know, including health professionals.