This post has been featured at the Chronic Friday Link Up at Being Fibro Mom.
Most of my doctor’s appointments end with me sighing and requiring a nice brunch or dinner out to cheer me up. Whether it’s a doctor who doesn’t know anything about rare diseases, or a doctor who doesn’t seem to know much of anything, bad advice about rare diseases abounds. It forces us to become professional patients who know more about their diseases than most general practitioners.
The worst thing is having to find a new doctor after you’ve found one you like. No matter what the reason: your doctor retires, moves across the country, or you have to change your insurance, the end is the same. You wind up interviewing doctors with your fingers crossed and a trip to your local bakery planned so you can eat your feelings.
When Justin got a full time job at the hospital, we were excited because our insurance would be better than my old insurance, and disappointed because I had finally curated a team of doctors that had half a clue what they were doing.