We rarely know how much we affect others’ lives: I learned last week.

I love that 1946 Christmas movie, It’s a Wonderful Life. Jimmy Stewart and Donna Reed. Hard-working and kind George Bailey, Stewart’s character, feels he’s let all his neighbors down and wishes he’d never been born. But an angel, Clarence, comes down to Earth to show George what the world would have been like without him. It’s not a pretty picture: the town has gone to ruin and George’s brother dies because George wasn’t there to save him.

Flash forward to now, my life. Out of the blue I got an email from a young woman, Daniela Rojas. Daniela has type 1 diabetes and told me how much I’d changed her life.

I asked her permission to post her message to me for two reasons. One, I was so moved I could barely contain myself. Two, we need to remember in all the hard work we do as advocates, we impact people every day, everywhere. It’s easy to forget because we seldom hear the stories.

From Daniela Rojas – (Whom I have since discovered is a psychologist and writes a blog at Diabetica Solutions.)

Hi Riva,

I would love to share your impact in my life, it truly would be an honor.

You must know I not only loved your talk (at the International Diabetes Federation’s 2015 World Congress), but also your answer and participation in a hypo session in Vancouver. In both you showed me that it was ok to live a life with low (blood sugar) numbers. The reason your words meant so much to me is a long story. If you don’t mind I’ll try to tell it to you.

I had a very “traumatic” debut (with diabetes). I was in a coma for three weeks, I had to stay in the hospital for a long time.

Before my diagnosis, I used to be a ballet dancer. I was very good actually and when I got diagnosed and then was at the hospital I was very worried about missing my ballet classes. I kept telling my mother they were going to kick me out. I told her this every single day in the ICU. She kept telling me not to worry and at the time neither of us really understood what was wrong with me or what type one diabetes really was.

One morning I was telling my mother once again that I wanted to get out and go to ballet class. At the time there was a med student in the room and he came over and told me “You need to stop thinking of ballet, you will never get to dance again. Ballet shoes will hurt your feet and if that happens because of your diabetes I am going to have to cut your feet off.”

I can remember that exact moment as if it was this morning. I remember holding my mom’s hand and telling her I didnt want to loose my feet, and her telling me that she was going to do everything to prevent that from happenning.

After that incident they tried to explain what type one diabetes was, and a very kind doctor told me the key to prevent any complications was to have low numbers daily, not hypos (blood sugar below 80 mg/dl) but low numbers. She said that could help me be healthy for the rest of my life.

Back then, this was more than 25 years ago, I had no access to glucose meters. I actually got my first one almost 4 years after my diagnosis when my mom went on a work trip to the States and managed to buy one. I remember my first reading was around 400. It was awful and so scary, I couldnt get that doctor’s words out of my head. After I could do daily readings, I started working to have low numbers, which plenty of times ended in a hypo.

For the past decade or more I have had HbA1c of 5.8, 5.9% and the highest of 6.0%. A lot of people keep telling me that’s a problem. That I am probably doing things wrong and that I am going to end up hurting myself.

That’s when you come in. I went to the hypo talk with Wim. You were sitting a row ahead of me. After the presentation ended, the lady who was on the panel said it was almost impossible to have low numbers without lots of hypos. If I’m not wrong, she even said it would be easier to watch a unicorn than coming across a person with type one with low HbA1c throughout a long period of time.

Then you stood up and asked for the mic. You said that was not true. You said you had been living a low carb diet and had amazing numbers for a very long time. There was a girl from Australia sitting next to you who felt the same way, and you said she had managed to do it herself as well. At that moment Wim came up to you and told you that I had done the same thing. You looked at me and told the lady us three had done it. Then she said we should probably work together on a book to help others get that.

You told as well that you have had hypos, but you manage them, you’ve learned and most importantly had been able to remain healthy throughout your entire life with diabetes.

You have no idea what that meant to me. I had finally found someone in the world who knew what I felt, and believed and didn’t ask me to be afraid of my body, not even my hypos.

In your talk you shared a story where you had a hypo and your husband helped you with it. That made me happy, made me realise that asking for help actually shows how strong you are as you are doing everything to survive. What’s stronger than that? It made me feel comfortable with the fact that at times sharing our hypos with others gives us the chance to choose between feeling stronger or more afraid and paralyzed. The way you talked about it made me feel so comfortable in my own skin that it actually allowed me to talk to Wim about this hypo project and here we are.

So thank you, thank you, for inspiring me. Without you knowing it you made me feel safe within my own self. Thank you for letting me see that what I had in my head was real and made sense, even though it is not what everyone else thinks.

Most of all, thank you for empowering me to share my life stories with someone other than myself; I really can’t thank you enough.

Hope you have a lovely Sunday afternoon, once again thank you very much.

Best regards,

Daniela Rojas

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I had a lovely Sunday, Monday, and now Tuesday afternoon. What we say, what we do, we will rarely know how it affects someone. You have to trust that it does. And every once in a while an angel, like a Daniela Rojas, all the way from Costa Rica, will pop out of the blue and tell you so.

Low carb recipes from Dr. Jody Stanislaw

Even though I really don’t bake, I always have an eye out for low carb treats. I’ve made almond bread which I love (should do it more often) and I regularly make chocolate biscotti with almond flour. So when my friend, naturopathic doctor and CDE Jody, who has type 1 diabetes herself, shared these recipes on Facebook, I thought they were well worth repeating. All simple and fast. The first two – the muffin you make in a coffee cup in the microwave – I live on, literally.

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1. Dr. Jody’s Super Fiber-rich, Low-carb Quick & Easy Flax Muffin:

Put into a coffee cup:

• 1/4 cup ground flax seeds

• 1 tea cinnamon

• 1/2 tea baking powder

….mix together in a coffee cup. Then add:

• 1-3 tea melted butter or coconut oil

• 1 tea vanilla

• 1 egg

• sweetener of your choice…the only one I recommend is organic stevia (check

out the powdered form by NOW)

….mix it all up

Optional extra ingredients:

• just a few small banana chunks (which make it super creamy & delicious)

• a few blueberries or chopped strawberries

• chopped nuts

• raw cacao powder (or cocoa powder) and few banana chunks, with or without

nuts

• try making it a mocha muffin!…add a tablespoon of raw cacao powder and a

spoonful of ground coffee. I have this one every morning!

• try a carrot cake muffin!…add shredded carrots to the dough, and then top the

cooked muffin w/ whipped cream cheese

Microwave for 45-60 seconds and enjoy! Be sure not to overcook it because

otherwise it will be too dry so experiment with timing since all microwaves are

different. If you have more time, to retain more nutrient content, cook in the oven at

325 for 7-12 minutes (experiment with that timing so it’s not too dry). **Due to very

high fiber content, be sure to drink 8oz water/tea/liquid with muffin.**

Enjoy for breakfast, as a snack, or an after-dinner dessert! All of my patients do.

2. Chia Pudding

• 1/4 cup chia seeds

• 1/2 cup milk of choice

• 1/2 – 1 tea vanilla

• stevia to sweeten

Mix together in small cup or bowl. Put in fridge for 10 min to allow time to thicken.

Please note, you really don’t have to be exact with any of the amounts of the

ingredients…as long as you mix chia w/ liquid and let it sit, it will thicken up. It just

depends on how thick you want it.

There are lots of variations with chia pudding so experiment! Here are some optional

extra ingredients to play with stirring in or adding on top:

• Berries

• Nuts

• Cacao powder (or unsweetened cocoa powder)

• Unsweetened coconut flakes

• Peanut butter

• Cacao nibs

• Cinnamon

• Pumpkin spice

Enjoy for breakfast, as a snack, or an after-dinner dessert!

3. Creamy Frozen Dessert

To make the base, put into a blender:

• 1/2 – 1 avocado

• 1/4 cup coconut/almond/soy milk

• 1 tbsp chia seeds

• 1/2 – 1 tea vanilla

• stevia – sweeten to taste

• 2 -4 ice cubes

Be creative with the exact amount of ingredients. The goal is to just get it to the

consistency of frozen yogurt. If it’s too thick, more milk. If it’s too runny, less milk, or

more avocado or chia. Blend all ingredients, then add your choice of additions below.

• Frozen berries (When using frozen berries, you don’t need to put any ice in.)

• Chocolate ice cream: raw cacao powder (or unsweetened cocoa powder)

• Peanut butter + chocolate chips

• Frozen banana chunks (cut up your old bananas into small chunks & then

freeze on a plate. Once frozen, store in freezer in tupperware to use in your ice

cream!)

Enjoy as a dessert or even as a meal!

4. Nut Fudge:

Put into a high-powered blender: (a standard blender may not work)

• at least 1/2 cup of your favorite nuts and/or seeds (peanuts, almonds, walnuts,

pistachios, sunflower seeds, etc)

• 1-2 tbsp of raw cacao (or unsweetened cocoa powder) –> amount depends on

how rich you want it to be

• stevia to sweeten to taste

Blend well and enjoy!

5. Chocolate Milk/Hot Cocoa

• 1 cup almond/coconut/goat/soy milk

• 1-2 tbsp of raw cacao (or unsweetened cocoa powder) —> amount depends on

how rich you want it to be

• stevia to sweeten to taste

 

Victor Montori, M.D. Mayo Clinic and living a patient’s life

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I’ve never met Victor Montori but I’ve long admired him. I’ve read his tweets, become familiar with his minimally disruptive medicine approach and watched him on TED. He is a patient’s doctor.

I was so struck by his quote above that I read some time ago I wrote it down. It was probably three or four months ago as I recognize the teal Sailor Jentle Yama Dori ink that was in my Nakaya urushi fountain pen. Sorry, I’m getting sidetracked. Fountain pens will do that.

The quote if you can’t read my scribble: “We don’t measure the work of being a patient. There is not a single textbook that describes the work of being a patient. We just assume it’s not a big deal.”

If you’re familiar with the maxim, “to see the world in a grain of sand,” I hear the same big idea in another simple thought. Just like we find the awesomeness of the entire world in its smallest details, a grain of sand, the lived experience of being a patient speaks volumes. But no one is asking. In all of medicine, healthcare, the constant sturm and drang of how do we help people self-manage, get access to care, no one is really looking at us and what we do every day.

As a society we are consumed, possessed you could say, by “treating” disease, getting patients compliant on their medicine, lowering costs, reviewing yearly labs, but who is curious about the patient-life: the daily, yearly, monotonous, momentous, hack-ing, soul-crushing, awe-inspiring, enervating work of being a patient and living a patient’s life?

Having type 1 diabetes 45 years, my life with it has transformed over the decades. Shaded by things non-diabetes and on the diabetes front my lack of and increased knowledge, the tools and information available at any time, better medicines and devices, the compatriots I now have and diabetes community I now live in.

And yes, my friends, whether you call diabetes a condition, an illness or a disease, we live a patient’s life; you cannot afford for long to not think about what you eat, whether you’ll walk, refilling your meds, taking your blood sugar or your supplies, you just can’t.

I hope I meet Dr. Montori one day soon. Just as I hope my (Holy) Grail fountain pen wings its way into my apartment one day soon. For now, just like that beautiful ink that recorded words so true, here are some lighter and darker shades of my diabetes journey.

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No words….

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1 year with T1D. 1 shot a day

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Life still happens…

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Currently Ambassador for IFL. Nice shirt.

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First book of three. Millions of articles (slight overstatement).

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DiabetesMine Innovation Summit where I made the point – Why aren’t we studying people with diabetes who do well? Instant tweets.

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On stage. Remarkably, a happy home for this shy kid.

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Just another hotel room. In Munich to present to Roche Global Access executives.

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Best stickers ever for Dexcom. Shop: B-label, Harajuku (Tokyo).

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The husband who’s on this ride with me every day.

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Accuracy or precision? Meanwhile life hangs in the question.

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109 at 3 AM in an airport lounge. That means you’re tired, and happy.

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Another day, another check…another meter.

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Giving diabetes the finger?

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In Bangalore, 22 year old with T1D and such poor care she couldn’t close her hands.

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In Bangalore, all have T1D, they get 1 strip/day.

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Diabetes friends are like no other. They’ll make you sweets with no carbs.

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Yuck, grrrr!!!

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With beloved Dr. Richard Jackson. Also part of the life.

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Reward in Munich after my pre-presentation blood sugar exceeded 225. Autonomic nervous system.

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New territory: sharing one’s blood sugar numbers. We like it.

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They soften the blow, blow, blow…

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Can this (Abbott Freestyle Libre Flash Glucose Monitor) inserter really be so simple? Yes.

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Everyday gear.

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An Israeli Jew bringing diabetes care to Arab Israelis. All heart.

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Al fresco breakfast in Be’er Sheva. After presenting to educators in Zichron, Israel.

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Only 5 years away. Aspirational, it guides me.

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You walk alone no matter who’s there. Diabetes is constant and you are brave: the patient story.

 

Medicare now covers Dexcom CGM. But also, read the fine print.

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I tweeted this two days ago when I heard yet admit I’m remiss not to have put in here. This news is important enough to stand on its own – now the Dexcom G5 continuous glucose monitor is covered under Medicare Part B.

Eligibility factors include having diabetes, current use of a home blood glucose monitor and frequent glucose testing of a minimum of four pricks daily, current treatment with multiple daily insulin injections or an insulin pump, and frequent need for self-adjustment of insulin regimen treatment based on therapeutic monitoring.  A bit more info here.

At 63 years old, this is heartening to me, only a few years away from Medicare as well as the fact that people with type 1 diabetes over 65 who have been living with it for decades are the most vulnerable population to hypoglycemia unawareness.

Let’s only hope, given the criteria for coverage, those of us who manage our diabetes well because of all the work we do, including using our devices, find we’re not eligible for a CGM because our blood sugars are so well managed!

A “hygge” weekend from presenting at ADA in Madison to entertaining in Brooklyn, NY

IMG_5837.jpgFriday I flew to Milwaukee, Wisconsin and then Ubered (I’m pretty sure it’s a verb now) to Madison. I was presenting the Flourishing Treatment Approach and conducting a workshop on two of its tools for diabetes educators at the American Diabetes Association conference.

I arrived just in time for the 5 PM reception. Well I’m no fool! Actually, it’s my way to get a feeling of the room, meet some people, ask how they’ve been enjoying the conference, find out their expectations, what they liked, what they didn’t like.

The next day as I presented I saw heads nodding throughout the large banquet hall and minds shifting to entertain this different way of working with patients. At the same time a Scandinavian invention called Hygge was happening. It continued during the bathroom break where several people reached for me and told me how inspiring I was. It was present during the workshop as participants grew closer to each other working together, as my heart space grew even wider.

In both Danish and Norwegian, hygge (pronounced hue-gə or hoo-gə) refers to “a form of everyday togetherness, a pleasant and highly valued everyday experience of safety, equality, personal wholeness and a spontaneous social flow.”

I flew home Saturday late afternoon arriving at my apartment at 11 PM. The next day I was having two friends over for brunch who hadn’t seen each other in 31 years. It promised to be exceptional in any number of ways.

The next day after 5 hours of leisurely eating, chatting, sharing confidences and laughter in my little brick-walled (no fireplace) living room I mentioned hygge. That morning the TV program CBS Sunday Morning had done a story on Denmark, the happiest country in world, giving a nod to hygge. And there we were, as the light outside my window was fading, basking in the hygge threads we had woven.

I try to make it a practice, my spiritual practice, to be kind, and now I’m adding to practice hygge. To take the time to savor the simplest moments – with friends, with family, with my extended work network and colleagues, with strangers. I’ve already been doing this for some time when I write something and reread it days later just to experience the fulfillment again of having created something I’m pleased with instead of just rushing off to produce the next thing.

You most realize the value of these simple moments when you also realize, much to your dismay, that there are more years behind you than in front of you. If you’re lucky, after the panic and anxiety sweeps over you, you also know that it is the simple moments that matter most.

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“The Book of Joy,” conversations with Dalai Lama and Desmond Tutu

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For me lying in bed and reading a good book, particularly on these cold winter days, is absolute joy. And so was reading this tome of spiritual wisdom; being reminded how we can create that soulful sort of enduring joy, not dependent on the quality of our circumstances and not  utterly battered when life turns cruel and careless.

The Book of Joy is a week-long love-fest between these two spiritual leaders as they chat, eat and turn to each other with glee conversing about how we create joy. According to these masters creating joy rests on 8 pillars: humor, humility, perspective, appreciation, gratitude, acceptance, forgiveness, and compassion.  Generosity and Community are also players to keep us steady when life’s storms come.  At the back of the book are practices to more deeply develop these qualities, mostly meditations that open our heart.

I took notes going through the book to remember its most salient points. So, here, in no particular order, are extracts from the notes I took.

“We are meant to live in Joy. This does not mean that life will be easy or painless. The question is not how do we escape life’s hardships and frustrations, but how can we use them as something positive.

Joy comes from:

  1. Ability to reframe situations more positively
  2. Ability to experience gratitude
  3. Choice to be kind and generous
  4. Maintain/meditate on love and compassion

Why be unhappy about something if it can be remedied.? And what is the use of being unhappy about something if it cannot be remedied?

Too much self-centered thinking is the source of suffering. A compassionate concern for others’ wel-being is the source of happiness.

We need goals to be inspired, to grow, develop, be enlightened, but at the same time we must not get overly fixated or attached to these aspirations. If a goal is noble, your commitment to the goal should not be contingent on your ability to attain it, and in pursuit of our goal, we must release our rigid assumptions about how we must achieve it.

Peace and equanimity come from letting go of our attachment to the goal and the method. This is the essence of acceptance.

So while we should do all we can to realize the goal we seek, whether we succeed often depends on many factors beyond our control. So our responsibility is to pursue the goal with all the dedication we can muster do the best we can but not become fixated on a preconceived notion of a result. Sometimes, actually quite often, our efforts lead to an unexpected outcome that might even be better than what we originally had in mind.

When we accept what is happening now, we can be curious about what may happen next.

It is not happiness that makes us grateful; it is gratefulness that makes us happy.”

At this age I’ve been fortunate to reach, I find when I take the time to make others feel seen and important, I get tremendous joy.

As in the book – When you wake up thank God for anther day. Hope to serve, if impossible then not to harm.

And maybe that’s really my life’s work. The littlest thing like thanking the girl who rings up my groceries, really looking in her eyes and offering a smile. A little zing happens in my heart, hers too I am sure as she smiles back. That zing is the human connection happening in real time. Something we so rarely experience these days. So take it from me – if you take the extra minute to create such interactions, you will have more joy.

Of course now I am on to my next book, This Close to Happy, Daphne Merkin’s memoir of living with depression. I expect I’ll have to practice my joy exercises every day to stay righted reading this one.

 

 

DPAC and Glu team to protect our right to healthcare. Your story needed.

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Here’s the lead – diabetes advocate Christel Aprigliano who leads DPAC, an org created and dedicated to bringing diabetes issues to Washington D.C., has teamed up with Glu and they are asking for your help. That help is to be part of the movement to get Congress to make sure if the Affordable Care Act is repealed, people with pre-existing conditions, like diabetes, will still be covered.

Go here to learn more and share a bit of your story living with diabetes. I have.

Glu, if you don’t know is a type 1 diabetes community accelerating research and shared learning in the diabetes space. As part of their mission they are working with DPAC in their joint push to keep access and affordability to healthcare for people living with Type 1 diabetes.

Thus far Glu has partnered with 72 organizations that advocate for people with life-threatening chronic illnesses to inform our current administration and Congress of the ramifications of taking our healthcare away – and to prevent it from happening. Details here, including the letter already sent to Congress.

Please share this because it’s true – we are stronger together – and no one should be without healthcare.

 

Low glycemic index treats for people with diabetes

Of late, I’ve been sent, with my permission, three different food items that claim to be low glycemic index. This is not a post to contest that. They are. I just want to share what they are so you know and can decide whether you’d like to try them yourself.

Tom & Jenny’sThey produce caramels that are frankly luscious and sugar-free. I don’t typically eat caramels, but if you do, I think you’ll be very happy.  Jenny is a dentist who wanted to bring her patients a candy that wouldn’t stick to their teeth or contain sugar. Tom left his career as a management consultant to become their Chief Candy  Officer. Screen Shot 2017-03-03 at 2.23.53 PM.png

I was sent two bags – the plain caramels and chocolate. I brought them to a luncheon of 22 people and handed them around. There was only one dissenter and most wanted more. Needless to say they’re long gone so I can’t tell you how many carbs are in each caramel, but I’m sure if you write to Tom he’ll let you know.

FiberPasta – Mary Rose, a CDE, sent me a note on Facebook asking if I’d like to try these pasta and biscotti products made in Italy and made with high protein, high fiber and low carbs. Of course I would. The pasta’s glycemic index is 29 (compared to typical 40), with 15 grams of fiber and 12 of protein. In all honesty it tasted fine, although a bit bland, so I only tried it once. I just don’t eat much pasta. But if you’re looking for low glycemic index pasta you should try it. Now, the almond biscotti (11 grams of carb in 2), I loved. Not sweet and gorgeously nutty.

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Raw Amour – These chocolate truffles (I was sent two packages – the certified low glycemic and the coffee flavor) come six in a pack. The low glycemic truffles have a glycemic index of just 6. The package was a little misleading as it says, ‘Delicious Organic Truffles for Dark Chocolate Lovers.’ That surprised not just me but also Kyle, whom I shared them with (another T1D) last night, since they taste mostly of cashew butter, which was in the center while surrounded by what looked and tasted like milk chocolate. I’ve since been told they’ll be named ‘Cashew Truffles’ which is appropriate.

The coffee flavored, which I haven’t tried yet, does contain raw agave and maple sugar, yet still has a glycemic index of 15.

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According to Raw Amour’s website, they’re the only certified organic low glycemic chocolate in the marketplace. You can also read this review on One Drop where the reviewer tested the carb impact, feeling true amour for Raw Amour.

 

What Patients Say, What Doctors Hear

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…is the perfect title for this sixth book by Dr. Danielle Ofri, internist at NYC’s Bellevue Hospital, author and regular contributor to the New York Times.

I’ve read all of Ofri’s books and enjoyed the candor, conversational tone and heart with which she writes. She is a voice and witness for both patients and providers trying to do better with this fragile union.

I wrote a full book review on the Huffington Post.