Got a great idea to improve diabetes management or life with diabetes?

Do you possibly have an idea that’s simmering to improve diabetes care? If so, you might just get to attend, on full scholarship, the 2015 DiabetesMIne Innovation Summit to be held at Stanford University November 20-21st. Here’s how: share your idea via DiabetesMine’s Patient Voices Contest by the deadline – April 24th. I’ll be one of the judges for this year’s entries.

If you are one of the lucky winners, at the summit you’ll meet top industry and regulatory leaders, clinicians, entrepreneurs, health tech experts, national advocacy organizations and find yourself at one of the most exciting think tanks for innovative solutions in diabetes. Would be great to see you there.

The power of intention, passport-less, powered me to Holland

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A few weeks ago my mother in law passed away. She’s Dutch and lived in Holland. My husband had already gone over to help his sister with the funeral service and clearing of her apartment. I booked my ticket a few days later to arrive to help and stand by my husband’s side for the service. I almost didn’t get there.

So now I tell you this is not a story about diabetes but the power of intention. And I believe that power is available to us all the time to turn around how we’re doing with our diabetes and our health.

Working at my computer the night before my flight to Amsterdam, I got the online notice from Delta to check in. My flight was scheduled for 5:23 PM the next day. Checking in, I got to the part where I had to enter my passport details so I retrieved my passport from my bedroom dresser. Walking back to the computer, I opened my passport and saw my passport had expired! Six weeks ago!

Panic filled me. I could not not be there for my husband Boudewijn. I could not let him go through this alone. Head pounding, my heart doing sumersaults, I maniacally searched online for a number to call to get a passport – now!

The first number took me to the automated line for passport agency appointments. Great, I could book in on April 8th, thirteen days after my flight. Next, I was on another number with a passport agent who after keeping me five hopeful minutes on hold said she could squeeze me in tomorrow at the lower Manhattan passport agency at 1 PM.

While I’m used to being squeezed in to most things in New York City, there’s no way I could be in Manhattan at 1 PM, wait for what I was sure would be hours to get a new passport, and make it to Kennedy airport by 3 PM for my flight. No law of physics or wormhole would allow that.

She gave me another number to call where I was to ask for the Duty officer. Apparently the Duty officer is The Wizard (as in of Oz) for passports. Telling my story for the fifth time, now nearly in tears, he was undutifully kind and said, “Tomorrow morning first thing just go into the passport office, they open at 7:30 AM. Here’s what you need to bring your expired passport, form DS 82 completed and signed, a passport photo, flight itinerary and death certificate.” He asked my name and when I told him, he said, “Don’t worry, Riva, they’ll help you.” For the first time in hours I stopped worrying and got into the necessary action to make this happen.

Immediately I emailed my husband who was sleeping peacefully in Holland so that when I awoke the next morning he would have already emailed me the death certificate with a translation. It needed to be in English!

Now at 7:30 PM I located the 6-page form DS 82 off the state.travel.gov web site and began printing and pulled the single passport photo out of my drawer where I had seen it just days before looking for euro to bring to Holland. My printer humming along spit out four pages of the form. I kid you not. Forty five minutes of turning it on and off, lifting it off the floor, cajoling and sweet talking it did not render the remaining two pages but a message window that said, “broken pipe.” Really? My printer was bust and documents still needed to be printed.

What was I going to do now? I left my apartment and knocked on my upstair neighbor’s door to see if he could print the legal form. He did and I skipped back to my apartment and began filling it out. Of course now I realized I also needed to print my flight itinerary and whatever documents Boudewijn would send overnight.

I called another neighbor, who I was pretty sure worked from home, and has two little boys, figuring she’d be up at 7 AM the next morning. And so I’d secured the printing of the remaining documents and my running into town among the commuters the next morning.

For all its obstacles, never did I allow myself to think I won’t make my flight tomorrow. Somehow I knew if I kept putting one foot in front of the other, I would find the way to get done what I needed to do and make it happen.

As I knew it would, the next morning there was a death certificate from Bou in Dutch and English and encouraging words. I picked up the printed documents from my neighbor and sprinted out of my building at 7:20 AM. Two subways later I was in passport office at 7:45. I got on the line for people with no appointments, got mine, and by 9 AM was at the counter in front of an agent.

He took my passport document DS 82, my credit card, and told me it usually takes 4 hours to process a new passport. “But my flight is this afternoon,” I squeaked. He said he would expedite the process and it should take 90 minutes, no more than two hours. “The pick up window doesn’t open for another hour so just be back at 10 AM.” I won’t complain about the fact that no one looked at the death certificate, I will tell you at 10:40 AM I had my new passport in hand and almost toyed with the idea of a congratulatory cappuccino at Starbucks before heading home. Not wanting to tempt fate with an unexpected subway breakdown, I headed home.

A few hours later sitting at JFK waiting to board my flight, I called my mother and told her the story. She laughed along with me and said, “You know this is a great lesson in remembering that whatever you really want to do, you can.” Exactly, mom, I thought.

There is an equally dramatic ending to this story. Two hours after I landed in Holland, they closed the airport and diverted flights to neighboring countries like Denmark and Belgium. Half the country had a power outage. I was ever so grateful to be spared that last hoop.

I learned many years ago while taking a series of personal development trainings that when your intention is clear there’s almost nothing you can’t do. Intention has a power all its own and a bit of tunnel vision in the most positive sense: you just see before you what it is you want to accomplish – and your energy, mindset and behaviors follow down that track.

It’s a great lesson to be reminded of no matter what’s up for you. Wanting to change how you eat, manage your blood sugar, interact with your kids, finally plant that garden or write the next post. With any luck you won’t need a valid passport to get where you’re going.

Physician Abraham Verghese advocates doctors treat patients’ two hearts: organ and emotion

I read doctor Abraham Verghese’s book, Cutting for Stone, last year. It’s a momentous story of emotion, medicine and the relationship between twin brothers. As opening speaker last month at the American College of Cardiology (ACC) Scientific Sessions he addressed cardiologists about another pair of twins – the two hearts each patient carries, the organ itself and our emotional heart. And, the importance of treating both

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Below is a review of his address as printed in Medscape.

Dr Abraham Verghese on Treating the Real Heart

By John Mandrola, March 14, 2015

We do more than move catheters from the thigh—now the wrist.

We do more than prescribe a drug that relieves the strain of forward flow.

We do more than implant devices under the skin of the chest.

Cardiology is so much more. There is an intangible about the heart, something other than biology and physics.

The thousands of attendees at the plenary session of the American College of Cardiology 2015 Scientific Sessions were like patients: we wanted—no, needed—to celebrate what is so beautiful about our vocation, our being as doctors.

And who better than author, doctor, teacher, thinker Dr Abraham Verghese (Stanford University, CA) to inspire us?

I’ve been to a lot of plenary sessions at major medical meetings. They are always good, but this one was special. You could feel the collective craving—for humanity. Doctors need this now, more than ever.

Dr Verghese did not disappoint. He started, with a poem by ee cummings, ” [i carry your heart with me(i carry it in] .”

That led him to speak of the heart in two forms.

There are the hearts that we randomize, meta-analyze, and catheterize—the topics of many sessions this week in San Diego. These are the easy hearts to see.

But those were not the hearts Dr Verghese spoke of. He spoke of the spiritual heart—the organ that connects us as people.

How do we make that connection? How do treat the real heart of our patient?

First is to harness the power of words. “Words will be the glue that makes this meeting happen,” Dr Verghese said. But as the great physician-writer Walter Percy warned, we must not let the technical jargon of medical language be like blinders to the suffering of our patients.

Dr Verghese reminded us of what electronic medical records (EMR) have done to the words that make up the human stories of medicine. He cited a study that showed a typical ER doctor spends 46% of the time on a computer and that a typical day includes 4000 clicks. Another study showed medical trainees at Stanford spent more than 6 hours per day logged into a computer.

This precious time, these important words, are wasted on creating a bill. “EMR has nothing to do with your heart, or your patient’s heart.” (My comment: Read that again, and again. Tell everyone who will listen. Tweet it. Don’t stop saying it.) 

Another way to carry the hearts of our patients is to notice the ritual of the encounter between patient and doctor. “It is a bit like love,” Dr Verghese said. “You are thrust onto your physician by an event. Here comes this capable person who cares for you.”

Unfortunately, in this era, it is an unrequited love. Your doctor is there to talk about only one heart, the one with pressure gradients and ejection fractions.

“Ladies and gentleman,” Dr Verghese said, “words are hard. . . . But thank God, there is place beyond words.”

That place is the encounter between doctor and patient—the ritual. Patients trust us with their secrets. They disrobe and allow us to touch them. “Meanwhile,” he said, “we wear a ceremonial white outfit and they a paper gown. . . . How is this not a ritual?”

The esteemed writer and doctor told us that when we recognize our own sense of self and of the patient’s being, something profound and magical happens.

But when we shorten this ritual, when we don’t hear or touch the patient, we miss the transformation.

He is correct. I hear the same complaint from patients: My doctor did not listen, he did not touch me, and he had his hand on the door the whole time.

It does not have to be this way. Dr Verghese told us what we already know but are pushed to forget: if we connect with the real heart of our patient, then we approach the magic of poetry—a place where the mind and heart say the same thing.

Doctors seek more joy from our work. We need fulfillment. It is not easy, this I know, but each time we see a patient is a chance to carry a heart. That is, if we notice it.

In helping thousands of heart doctors notice this immense power, Dr Verghese does a lot of good.

———

We can only hope against all odds – the crush of paperwork and electronic record keeping, billing impediments and lack of time – physicians will slowly inch back toward the healing ingredient so lost today, hearing “the other” heart.

Two resources addressing the desperate need for care in healthcare

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I am completely mesmerized by how our advances in technology have like an eclipse blinded us to the need for the human touch in healthcare, especially when tending to those with chronic illness. Also, as my parents are living the latter stage of their lives, and I just lost my mother in law last week, I am equally curious how do we plan for a good death?

To that end, I’ve just started reading, The Conversation: A Revolutionary Plan For End-Of-Life Care. It’s author, Angelo E. Volandes is a doctor and shares this at the beginning of the book:

“Despite its focus on the twenty first century American approach to dying, the true subject of this book is life, because a life well lived deserves a good ending. When asked where and how they want to spend their last few months, nearly 80 percent of Americans respond that they want to be at home with family and friends, free from the institutional grip of hospitals and nursing homes, and in relative comfort. However, only 24 percent of Americans older than 65 die at home; 63 percent die in hospitals or nursing homes, sometimes tethered to machines, and often in pain. The reasons for this discrepancy between the type of medical care people want at the end of life and the type of care they actually receive are many, and include hospital culture, medical reimbursement schemes and legal concerns; but the discrepancy is largely due to the failure of doctors to have discussions with patients about how to live life’s final chapter. This is one of the most important problems facing American medicine today.
 
Despite the billions of dollars that are invested in new technologies in Americas finest hospitals, the most important intervention in medicine today happens to be its least technological; timely and comprehensive discussions with patients as they near death. Without this open conversation about death, patients are traumatized needlessly, leaving their families with the emotional scars of witnessing the hyper-medicalized deaths of their loved ones.”
Last week I also watched the new PBS documentary “The Quiet Revolution.” It shares the story of a small town doctor who knows relationships are the vital part of medicine, as is community. The documentary begins with how he tends to his patients, almost all of whom suffer with diabetes. The second story highlights a telehealth company in Mississippi, the state that’s won America’s first place for obesity several years running, helping people with diabetes bring their disease under control. The third story portrays healthcare in Alaska for native people and the rise of one young native woman who has created innovations for the community.
It’s barely a whisper and still hardly done in medical schools to offer training in communications and talking with families, yet here and there there is a small groundswell of those who know that putting the care back into healthcare is what we so urgently need to do, especially as we are living longer and living with one or more chronic illnesses as we age.

Renewing one’s vows to diabetes

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It was a remarkable Saturday evening in lower Manhattan a few weeks ago. Seated in an old Fire station just off Canal Street about 100 of us, including several diabetes’ luminaries – Psychologist Bill Polonsky, DRI’s Tom Karlya, AADE Educator of the Year Susan Weiner and Marjorie’s Fund founder Jason Baker – watched Paul Binder above renew his vows to his diabetes and his health.

This historic event was hosted by an innovative organization called The Betes. The Betes uses theatre and play to help people with chronic illness embrace their very personal story of illness – see them, hear them and begin to transform them to heal.

Read the whole story on The Huffington Post.

The Little Red Sports Car JDRF Sold to Ford

red carA Guest Post by Eleanor Troutt

Eleanor asked if she could share her story and how could I refuse. She’s written three inspirational books, available world-wide, for kids with T1D.

I’m a senior citizen who happens to have type 1 diabetes. I say “happens to” because diabetes doesn’t define who I am – it’s just a nuisance which I have to keep close tabs on. I don’t want to minimize this disease because it can be a killer but, to me, it’s a wily opponent whom I’m constantly trying to outsmart. And, it’s given me something I’m still in awe of – three published books.

A few years ago I was asked to be a counselor at two summer camps for children with type 1 diabetes and their parents. I thought about what I could share with the children and an analogy formed in my mind. I could compare the changes that diabetes had made in my life to those of a little red sports car that developed a serious mechanical problem. I had always taken my body for granted until it suddenly ceased functioning smoothly and required a major adjustment. Similarly, the little car in my analogy developed a problem which required its owner to learn a complete new way to drive it.

At the end of each camp session there was an amateur evening where campers and counselors presented something for everyone’s enjoyment. I read the story of the little red sports car. Many of the parents were moved and some were in tears as they related it to what they and their child were going through. Several said I should put it into a book.

It was eight years before that became a reality, but with a lot of time and effort and a large measure of help from God, I finally got it out in book form.

Wanting to donate a portion of the sale of each book to the Juvenile Diabetes Research Foundation, I made an appointment to see the CEO of JDRF in my area. She was intrigued and felt the book could be used as a fundraiser by the Ford Motor Company, which was a major sponsor of JDRF. With her help, things happened quickly – one Ford Motor Division after another put in orders for books which they sold and then donated the money to JDRF.

That got The Little Red Sports Car started on its journey and it has sold all over the world since.

Since then I’ve written two more books for children with type 1 diabetes. My second book, Winston the Amazing Dog, is about a guard dog for a circus, who watching the trainer teach one of the stunt riders a new trick, seizes the opportunity to show that he can do it too. People come to the circus just to see him perform, but then he gets diabetes and is devastated thinking his circus career is over. However, with the proper treatment, he performs again and goes on to become even more famous!  Diabetes doesn’t have to stop anyone from becoming anything they want to be.

My third book, Boots the Giant Killer, recounts the story of a little kitten who takes on a clever and wily opponent and wins.  Much as we who have diabetes have to do on a daily basis.

My hope is that my books give children hope that they can live a normal life in spite of diabetes – just with a few adjustments. And I can say that based on my own experience.

My Atlanta washer woman

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This morning I was sitting in the Atlanta airport on the way home from a Sanofi meeting. I’d been invited to moderate a patient panel. Since Sanofi will be losing its patent on Lantus it’s launching a new long-acting basal insulin, Toujeo. The main benefits of Toujeo appear to be a low incidence of nighttime hypoglycemia and 24 plus hours of action. For someone who only takes 8 units of Lantus a day I’ve been told and experienced that it doesn’t last me 24 hours. Toujeo would be a meaningful improvement for me.

But this post isn’t about Toujeo or insulin or Sanofi or even people with diabetes. This post is about Maria the washer woman in the Atlanta women’s rest room, Terminal A just aside gate A 9. She made my trip home, after basking in the compliments from the Sanofi reps, a continued high.

With the line snaking out of the rest room, Maria stood at the front of the line announcing each open stall as it became available. “Okay, two on the left, come right here ladies.” “We’ve got one open in the back on the right just for you ma’am.” “C’mon, ladies, shake a leg, right up here.” “Can I hold your package for you ma’am?” I smiled throughout her broadcast and marveled that she had made one of the loneliest and most menial jobs into a little beehive of super-connectivity, made herself vital to us and turned waiting on a ladies room line into a joyful act.

I left the rest room but couldn’t walk more than a few feet before I turned around and walked back in. I asked Maria, “Can I take your photo? “My photo?” she asked dubiously, curiously. Yes, I said, you gave me so much pleasure while I was waiting on line, you’re amazing. She grinned shyly and posed. cleaneer

Nothing more important going on here than what’s most important – connecting, giving away kindness, creating joy and ease. I’m home now, still thinking of you Maria and still grinning.

New health strategy: Live like a diabetic

I was doing some research this morning for the book I’m currently writing on flourishing with diabetes when I came across a note I’d made to myself. Re-read this article.

Alex O’Meara, author of the post, received two islet cell transplants and was diabetes-free for two years. What’s interesting is during that time as he says, “I did not go out and eat a chocolate Easter bunny. I didn’t sit with gallons of Ben & Jerry’s and sample myself into a gait-altering weight gain. I didn’t gorge at McDonald’s, or drink a pony keg of Pabst Blue Ribbon…” He still thought and acted like a diabetic continuing to eat healthy and exercise.

Almost two years after the transplant his islet cells began to die and he was back to taking insulin shots. But as he says, “I realized my entire life might be a whole lot better as a result of living it as a diabetic.”

I always say I’m healthier due to having diabetes. I would not have given up my beloved scones or walk through snow and slush each winter day had I not the reason to maintain my insulin sensitivity and live a long and healthy life. Maybe we ought to tell our fellow Americans to live like a diabetic [granted, without the constant carb calculations, shots, devices, frustration and worries  ;-)] and watch their health improve.

Positive-speak is surprisingly human

Little girl_2 I’m always a little leery of coming off as Pollyanna talking about flourishing with diabetes and issuing my personal mantra, “You can have a great life not despite, but because of diabetes. But lo and behold I appear to be in the majority not the minority, so maybe I don’t have to hold my tongue.

Just this morning the morning news broadcast research on how we talk, and the story was published in the New York Times. Research shows most of us speak more using positive language than negative. We may be consumed with problems in our lives and we see nothing but talking heads discussing how the world is falling apart, after all news has always followed it’s own mantra, “if it bleeds, it leads,” yet as social creatures who enjoy socializing we talk more often about the positive.

Admittedly, one piece of advice to be happier is to avoid negative people, now that seems quite prescient if not wise. For the full article click here.

I gave her a seat, she gave me a bracelet

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I’m nose-deep in a book I love, Goodbye to All That. It’s based on the quintessential essay Joan Didion wrote about arriving and leaving new york decades ago. The book’s 24 essays, all love/hate letters to new york city capture what constantly goes through your mind and slips through your fingers living here: why you love New York City and would never leave and my, god, how much more of this can I take and where can I go? Its 24 writers have all been there, ahem here, and left. Some come back, some only pine to.

With all those stories filling my head, yesterday I had the perfect new york city day. It started with gifting two hard crusted fennel seed rolls to two acquaintances and ended with being gifted with this bracelet above – and wondering what would life be like if we minded others as much as ourselves. Let me back up.

My husband arrived home from Holland Thursday night after a month away on business and immediately went into a three day course in Manhattan. Yesterday, I was meeting him and two of his friends in the course for dinner. That morning I did something I rarely do, I went shopping; I walked from one to another of my Brownstone Brooklyn neighborhoods treasure-hunting and enjoying the sun after weeks of frigid temperatures, finding everyone friendly in a way we only are here when the sun pokes out after weeks of frigid temperatures.

Toward the end of my errands walking to the bus stop to enjoy the leisure of a bus ride home rather than submerging into the subway, I passed my favorite Italian bakery. This is no ordinary bakery, this bakery has been there longer than you’ve been alive no matter how long that is. Walking in you are engulfed in not the sickly sweet smells of ordinary pies and cakes, no, but nostalgic smells of Italian grandmas who spent their days baking sesame and almond cookies, cannolis and sweetly dry ricotta cheesecakes.

I hesitated thinking of the hard crusted subtly sweet fennel roll only they make. Nah, I said to myself, I don’t need it. So I walked on only to walk back after a few feet. I bought two rolls and asked that they be put in separate bags delighting myself by my own idea that I would give them to my husband’s course-mates when I met them that evening. They were both staying in temporary residences and I thought now they have breakfast.

And so at the end of dinner, I reached into my bag and brought out the little paper white bags with their hidden treasure. How do I describe the silence with so unexpected a gift and the genuine appreciation. I thought how sad it is we don’t do this more often. Just give a little gift to say, “I thought of you.” Just give a little something, even if it’s just a compliment, to touch someone else. We all left the restaurant and my husband and I walked into the furiously falling, fresh, puffy white snow. It was uproarious, magical and we walked to the subway.

Ten minutes into the ride home I noticed an elderly woman standing and got up to give her my seat. As I did, several other people also seemed to arouse and notice her, she who had almost seemed not there a moment earlier. Now several people were offering her their seat but she was insistent to take mine as I had made the first offer. Supported by other passengers, they gently moved her to my seat and righted her. Then we actually took her in. She was dressed quite fashionably in a gold scarf, little ribboned shoes and her light eyes sparkled.

My husband and I began to talk with her and it turns out she is a designer and was returning from a fashion show in Manhattan. She was raised in Istanbul, despite her porcelain complexion and green-blue eyes and is 82 years old. A moment later her eyes filled with tears and she told us that she lost her husband two years ago and it was lonely. She asked what my husband and I do. He told her he helps people do better in whatever their field, mostly business, and that I help people with diabetes. She was moved, her face lit again. “What is your favorite color?” she asked. “Pink” I said. For several moments she searched deep into her big bag and took out this bracelet and gave it to me. Those Italian rolls danced around my head, you give, you get.

“When you get to your stop can you get home?” my husband asked. She looked a bit apprehensive but said yes. She gave us her name and email address, I wanted to think about getting to know her better, contacting her, but I likely won’t because that is also how things happen in New York. Unexpected intersections and then they fade away.

But it was the perfect New York day and I pondered, if this is how days were how beautiful life would be. Perhaps my perfect yesterday was also a special gift to me from above. Yesterday was my 43 year diaversary and I couldn’t think of a way I would have rather celebrated it. Of course now you’ll say I buried the lead.