Jen,

I do hope you will never have the "opportunity" to understand what me and Annie understand so well.
I hope less and less patients will have this opportunity.
As a physician, I am trying to do my best so this will happen.

I now have excellent physicians involved in my care, but they too are quite helpless with the system.

One of them said to me-modern medicine is very efficient in taking care of "standard" patients. We have algorithms, infrastructure and what ever is required. But, once it comes to patients that don't fit those schemes we are very poor in taking care of them.

The other used the saying-falling between the chairs. When you have an illness or condition that is a bit more complicated, you will have an expert for one aspect of it, and another expert for another aspect, but no one to put it all together.

Another said to me- your patients have gained from your illness. Your "first hand" understanding of what it means to be an "out of the box" patient is of much benefit to them. You take every effort to ensure that none of them falls in between the chairs, and find the way to put together the pieces so they will receive optimal care. even if requires innovative thinking out of your field of expertise.

I think he is right. I always saw myself as a caring physician, but no doubt that my own experience made me look at my profession and my patients in a very different way.

My occupational physician said to me that I should write a book about it. I told him that I should be a bit further away from those experiences so I will not be so emotional about it. I do not want to express anger, or make those involved think I am accusing them of malpractice. I want them to think with an open-mind about it. I want them to understand that although there are not many patients like me, that can write and talk about it, there are many like me. Many who don't fit those "nice" algorithms of modern medicine. In fact, most patients don't at least to some extent.

I just came across a column written by a fourth year medical student. "The Grimm's practice of medicine"

http://www.nytimes.com/2011/07/01/op...01gribben.html

Let's hope that she will stay that way for years to come, when she is a world leading expert, a famous writer or both.

And if so, let's hope that there will be more like her.

more that think-

"Healing, I’m learning, begins with kindness, and most fairy tales teach us to show kindness wherever we can, to the stooped little beggar and the highest nobleman. In another year, I’ll be among the new doctors reporting to residency training. And the Brothers Grimm will be with me."

"Fairy tales are, at their core, heightened portrayals of human nature, revealing, as the glare of injury and illness does, the underbelly of mankind. Both fairy tales and medical charts chronicle the bizarre, the unfair, the tragic. And the terrifying things that go bump in the night are what doctors treat at 3 a.m. in emergency rooms.

So I now find comfort in fairy tales. They remind me that happy endings are possible. With a few days of rest and proper medication, the bewildered princess left relaxed and smiling, with a set of goals and a new job in sight. The endoscopy on my cross-eyed confidante showed she was cancer-free."

I too, like her, found comfort in fairy tales: Alice in wonderland-the little girl who found herself in the land of illogical logic, and mad-hatter's tea parties; The little prince who met a geographer who knew very little about the places he described so well; Horton the elephant, who could hear and see what others could not, and was ridiculed and nearly killed for that; Pooh, the bear with a very simple mind who could not understand the complex explanations given to him; Gulliver, who had to deal with not very smart giants and elves; The little boy who said the very simple and clearly evident truth about the emperor's clothes and many more, who were my companions in the hard times I had to endure.