Thank you.
I have started a list of questions, but have not finalized them. I will await the return of my former rheumatologist from her vacation and seek her input. Your note and others make me feel less alone with my frustration in trying to get information from doctors. Not all doctors I seem are mystified by health issues. In other words, I guess whatever I have is something my PCP, gastroenterologist and the new rheumatologist do not understand or know how to best treat. I have little confidence in my PCP and have filed a grievance against the gastroenterologist because of the manner in which he has treated me in the past, and also for misinforming me about many things, including but not limited to my current bile duct issue. I had no idea what I was going to be up against when my doctor told me almost 3 years ago that the "wait and see" approach would lead to losing 25 percent of my weight and cause me to experience the symptoms which I currently have. I am not used to advocating for myself, but have had to learn to do so. I think it is a generational thing, at least for me. That saying, "the doctor knows best" has become an oxymoron, and I am finding that many I know are facing similar issues with their health issues. I understand doctors have more work to do these days, probably don't get reimbursed enough from Medicare and things of that nature. However, I still believe that "do no harm" should be front and center even if it means these people who chose to be physicians have to work a little harder, use a computer etc. I mean no disrespect, these are my observations based on my experience. Having said this, it is exhausting and I cheer you for staying on that 20 year path in an effort to get what you needed in an effort to find out what was going on with your body. And yes, I do want to know if there is a name for my condition. I came home tonight from a friend's place, removed my socks and was shocked at how swollen they were. I had asked my PCP about this a few weeks ago, and he had no answer for me as to the cause. Maybe the time is drawing near me to find a new PCP, but I will wait until I see the hepatologist in March before making a decision. I guess my therapist was on to something when she told me that when my PCP asked me a few weeks ago if I wanted a different doctor, that that was "doctor talk" for "I don't know what is wrong with you."
Without my art, my bread baking, and many other activities I engage in, I probably would have gone crazy by now.