Really, “living with diabetes”?

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I know a lot of people don’t like the term “diabetic.” They think it reduces us to our disease. So we have come to use in our speaking and writing the expression, “people with diabetes.” For short PWD.

Personally, I don’t care what you call me. Well, within reason. I know what diabetes is for me. For those who do call me a diabetic, or use the term in their writing, I just see it as a shortcut with words, not a shrinkage of who I am.

That said, we often use another term for those who have diabetes. I read it all the time, “living with diabetes.” As in, riva is living with diabetes. I suppose I should tell my husband we are not alone and maybe this diabetes should pay some rent.

Have we picked up this expression as a euphemism? Does it seem less harmful, less real, more gentle if I’m living with diabetes rather than I have diabetes.

Truth is, I have diabetes. If I were living with it I’m sure I would have asked it to vacate the apartment a long time ago. At least stay under the dresser or go out into the backyard, if I had one.

I don’t say I’m living with green eyes, or tinnitus or shoulder tension. I say I have green eyes, tinnitus and shoulder pain. Well, if anyone bothers to ask. I also have diabetes.

Here’s my final word on the subject: After the cure, I know I’ll say, “Yes, I had diabetes,” not, “Yes, I lived with diabetes.” For really, any sane person would immediately ask me why I didn’t ask it to leave.

A funny, visual trip through a new type 1’s world

Months ago Joe contacted me for a quote about living well with diabetes. Quote given, Joe forgotten, I saw today he tweeted this wonderful article he scribed about being a newcomer to the type 1 club.

Have a read. He’s a funny, laugh out loud funny, touching, insightful guide through type 1 diabetes. It’s also an unusually pleasurable way to spend ten minutes, perhaps learn a few things and/or find your experience staring back at you through grin-producing visuals. Like this one:

Joe

Self-management and submission: A continuous dance between patient and physician

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I’m reading, slowly, mostly on my phone on the subway, a worthwhile book called “The Illness narratives.” It’s stories of people with illness and how they’re treated by physicians and the medical system.  As you might imagine, not very well and not in a way that realizes presence, caring and attention help people heal, even when they can’t be cured.

I read this passage this morning and liked the sentiment:

“…as an anthropologist working in a dialysis center for patients with chronic kidney disease, Linda Alexander (1981; 1982) drew on Gregory Bateson’s idea of the double bind in social relationships to describe the conflicting demands placed on the seriously ill by their care givers: first, be independent, not passive and dependent, and be active in your care; but when you have a serious exacerbation, place yourself submissively in our hands, and we will blame you for what you did or failed to do to worsen your disorder.” Not unlike diabetes.

Alexander shows how that conflict disorients patients and creates feelings of guilt. This interfere with effective care and over time can demoralize patients and their families. Jeffrey Longhoffer (1980) describes much the same phenomenon among patients and their families in a bone marrow transplantation unit. Perhaps the problem is a structural component of high- technology, specialized treatment settings. Patients are expected to be active collaborators in their care in the outpatient phase; but when they are in need of emergency room or inpatient therapy, they are expected to revert to passive compliance with treatment controlled entirely by physicians and nurses.

This push/pull is a constant dance and strain, and one both patients and physicians are little aware of. Just another piece of the story living with chronic illness.

Say Goodbye to Diets

I’m sharing Do’s and How-To’s from my latest book, ahem, ” target=”_blank”>”Diabetes Do’s & How-To’s.” Every month or so I’ll be posting another video here that dLife is also sharing. As you’ll see above, in three minutes you’ll learn some key tips for improving your diabetes self-management and grab a few recommendations just how to do so. Sit back, relax and in the next few minutes get off that dieting roller-coaster for good.

What to avoid at the grocery store – and why

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The information below arrived in my inbox from my friend and naturopathic Dr. Jody Stanislaw. I think it’s good information so I wanted to share. I couldn’t agree more with Jody’s assessment that In today’s grocery stores, sadly, most of what you see should not be called ‘food.’

Most items are NOT food… they’re ‘products,’ aka processed food…cereal, cookies, crackers, even most yogurts….packed with chemicals, salt, and sugar, sold by companies out to make a profit, and not interested in your health.

Processed foods make up over 70% of today’s diet. This is NOT helping the health statistics of our country, to say the least. To remedy this, and enjoy the benefit of greatly increasing your health, increase your intake of foods grown from nature…vegetables, fruits, nuts, lean meats, fish…at every meal.

As a starting point, here are 6 processed food products you should AVOID entirely and why:

#1) Canned Tomatoes
  • Tin cans are often lined with a toxic chemical called BPA. Although it can happen with all canned food, the acidity of tomatoes causes the BPA to greatly leach into the food. Buy tomatoes only in glass containers, or better yet, fresh.

#2) Processed Deli Meats

  • Deli meats such as ham, salami, turkey, and roast beef are generally sourced from animals raised in deplorable living conditions and given injections of hormones, antibiotics, chemical flavorings, dyes, and sodium nitrite = cancer causing ingredients. Cut up your own chicken or turkey instead.

#3) Microwave Popcorn

  • Microwave popcorn bags are lined with chemicals to grease-proof the bag…which end up leaching into the kernels when heated. These chemicals are part of a group called ‘gender-bending’ because they can cause infertility, as well as thyroid issues, cancer, raise your bad cholesterol, and lower your immune system. I suggest also avoiding all food in grease-proof wrapping, especially if it’s hot.

#4) Most Vegetable Oils

  • Because they contain the word ‘vegetable,’ they should be healthy, right? WRONG. Oils such as canola, soy, and corn are not only likely genetically modified, but when you cook with them, they turn your good cholesterol into bad. For cooking, the only oil I recommend is coconut oil, and for salads, use virgin, cold-pressed olive oil.

#5) Table Salt

  • Salt is essential for life. But not all salt is created equal. Table salt has practically nothing in common with natural salt. Natural salt, such as sea salt or himalayan salt, not only has less sodium chloride, but also contains naturally occurring beneficial minerals such as silicon, phosphorus, and vanadium.

#6) Artificial Sweeteners

  • Sweeteners such as Splenda and Equal have been shown to actually stimulate appetite, increase carbohydrate cravings, and cause weight gain and fat storage. Furthermore, studies point to these chemicals causing neurological problems. Use raw honey or stevia instead.

Dr. Stanislaw often gives free phone seminars. Check out her site and move toward greater health.

The muffin, bread and biscotti you and your blood sugar will love!

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A square of Life Changing Bread

Throughout my twenties and early thirties I was a scone-aholic. I admit it, you could usually find a crumb or two still on me any time of day. That sweet smell of butter still on my fingertips. No scone was safe from me.

I remember when the wholly dedicated scone store first hit New York City. Giant puffs of browned dough, a smell wafting through the store that could bring you to your knees. Right on the corner of 72nd Street and Broadway I’d found heaven.

I would pass each morning and leave the shop with my warm-from-the-oven raisin nut scone. The fact that I could bring it fully intact from the shop on my 45 minute walk to work where I would then savor it with a cup of coffee, was a feat of true mettle.

A few years later a gorgeous high-end Italian gourmet store called Mangia moved into town. What was their enticement? Whole wheat scones. Now I could have my scone and be healthy too. Of course we know better now, but not until I had racked up at least five hundred little squares of brown-tinged delight.

Okay, so I’ve gone scone-less and muffin-less for more than fifteen years, yes, for the sake of my blood sugar. But over the past several months I’ve found three baked goods that I whip up at home that satisfy every urge I’ve ever had for something nutty, crumbly and delicious.

Click here for the amazing 1 minute muffin, life-changing bread and chocolate ginger biscotti that are guaranteed to spike your tastebuds – but not your blood sugar. They are all exceptionally low carb and gluten-free. Enjoy!

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.

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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.