Inside view how the practice of medicine is changing

Screen Shot 2016-06-28 at 1.24.30 PM.pngI love reading readable books from health professionals. It truly helps inform me of their world since I can only sit on the other side of the examination table. You may know some of my favorite doctor/authors – Dr. Danielle Ofri for instance. She has written several books about things patients have taught her and writes for the NY Times. Then there’s  M.D./patient Rachel Naomi Remen who is also trying to help health professionals recapture the enthusiasm with which they first entered medicine.

I just picked up another such book, cover above. I’ve only just started but these passages below jumped out at me below. You can also read a very favorable review from the NY Times, and also an excerpt there.

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Keynote Speaker, Roche Diabetes Care global conference in Munich

My recent trip through Europe and Japan was admittedly all pleasure. But one of the pleasurable experiences was also work. I’d been invited to be the closing keynote speaker at Roche Diabetes Care’s global Market Access Forum conference in Munich.

While I was approached to share the patient perspective and send Roche attendees home inspired, I came with more. I came with an “add-on” for Roche’s corporate mission: Doing now what patients need next. In my view, what patients need next is not to cope with diabetes – but to flourish.

Flourishing is a much-ignored domain available to us – living a healthy, happy, productive, robust, meaningful life, not despite having diabetes, but because of it. Yet the universal focus for treating, and living with, diabetes is on coping.

Coping can be a limited and negative view. Coping carries with it a sense of struggle and muddling through, trying to come up from the depths to “normal.”

Roche Diabetes Care produces glucose meters, insulin pumps and lancing devices. Yet it was a new idea that they can also be in the business of helping people with diabetes flourish. A fundamental for flourishing is to have both “”Heartware” and “Hardware.”

Alyssa and family.jpge Heartware means to see the person living with diabetes – like my friend Alyssa (on right) above who has type 1 diabetes – not just our disease. To partner, champion, support and work with people with diabetes toward possibilities and their best possible outcomes. Hardware is the tools and devices that make managing diabetes easier and help us be more successful.

At the end of my presentation there was complete silence. The conference organizer asked for questions yet none came. Then slowly, they came. One woman, burst into tears. “We’re so moved,” she said, “We have to catch our breath.”

Several participants came up to me after my talk. They wished I had opened the conference rather than closed it. Their two days they said would have been spent differently – focused on ways to expand and enliven their mission in regards to helping people with diabetes flourish.

It’s a personal joy for me to connect with and move people. Whether I’m talking with those who live with diabetes, health professionals or those in industry. You so deeply affect the quality of our lives.

Thank you Roche Diabetes Care. It was an honor and a privilege to share my ideas with your people. Thank you to everyone I met who are in the business of helping we who live with diabetes.

End of Life for Pinkie

 

IMG_5014.jpgWell, actually it was the end of my sensor session. Pinkie (my Dexcom G5 CGM) and I have just returned from a 5-week trip through Europe and Tokyo, and I miss her.

(This photo is my two dear friends putting extra tape around my Dexcom adhesive to keep her in place. We are in the women’s bathroom at a bookstore in Tokyo. Yes, we got some strange looks.)

The last sensor that I wore on my trip lasted 17 days. That’s the longest a sensor has ever lasted for me – a week longer than usual. For the first time I had put Pinkie on my arm.  I’m not sure if it’s where I placed Pinkie that gave her extra life or this was just a stellar sensor right out of the bag. I’ll know better when I put the next one on, on my arm again.

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I feel a sense of loss going it alone these days. I find myself reaching for my iPhone several times an hour to see where my blood sugar is. My hand moves without thinking toward the phone and I have to stop myself. When I forget, I stare sadly at the G5 app screen telling me, “Tap to start 2 hour sensor warm-up.”

Yet while I miss Pinkie, I need a few days off. Just for the freedom of it. No doorways to worry about knocking into. No fear hoisting my knapsack over my shoulders full with groceries. No itching where the adhesive and extra tape have been placed. It’s a joy to feel light and unencumbered again. Still, I think of her through the day.

I wonder has anyone identified CGM withdrawal as a condition? Do I need a 12-step program? Is there a study being conducted on long-term addiction ramifications? Is it a good thing? A bad thing? Or just a thing?

End of life care for humans involves making people comfortable and pain-free during their last days and hours. Perhaps there should be end of life care for CGM wearers when they are between sensor sessions.  It would begin when your sensor gives you the “7 remaining hours” alert message.