Here you'll find things to improve your diabetes management: motivational tips, recent research, my observations and reflections, good books etc. Also:
1. Check out my books:
2. Read me on the Huffington Post
3. Always continue to learn and laugh
The twelfth year of my 20-year overnight success: Broadening the bandwidth to Flourishing with illness
I just got back from the Netherlands. I went as a speaker in Novo Nordisk's 5th DAWN Summit. Doctors, patients, psychologists, policy-makers and researchers gathered from 33 countries for two days of idea-generation and planning how to improve the lives of people with diabetes. I met wonderful people equally committed to help people with diabetes live fuller, healthier, happier lives, including a noted Dutch psychologist, Frans Pouwer, who hearing of my Flourishing Approach now wants to research it.
While in the Netherlands, I was also invited to speak to the leadership team of AstraZeneca, NL. AstraZeneca acquired Bristol-Myers Squibb and now diabetes is one of their largest market sectors.
For the past few years I've been noticing, increasingly, we live in a time I'd call "The Rise of the Patient." As patients, we are leaders in our own right living with an illness, and many of us have insights and capacities to help transform healthcare delivery for chronic illnesses. My own work toward that is sharing with health professionals how to work from a Flourishing Approach, as opposed to the traditional Coping Approach. And for people with illness, to live from the same orientation. I shared the Approach with Ginger Vieira in this recent post, "From Coping to Flourishing: How a Better Mindset Can Transform Health."
Every year since I've been working in diabetes I've said, "I'm in the first year of my 20-year overnight success." Of course each year it increases by one. Now I am in the twelfth year of my 20-year overnight success - and I feel the traction: of my own success, of the power of the patient and of minds opening to the idea that we have to do chronic illness differently. Actually, I have been sharing the Flourishing Approach over the past several years at various conferences e.g. the American Association of Diabetes Educators', TCOYD, DiabetesSisters and each time I am met with enthusiasm and respect.
In the past few months I have received many opportunities to share the Flourishing Approach and its tools around the world. In December in Melbourne, Australia at the IDF World Congress, where I addressed 134 Young Leaders in Diabetes on behalf of Novo Nordisk. A few weeks later, at the Royal Prince Alfred Hospital in Sydney where I addressed the endocrinology department.
In January I spent 18 days in Bangalore, India where I gave six classes and workshops to health professionals at the Jnana Sanjeevini Medical Center, a diabetes clinic for the poor. I have also addressed more than 200 medical professionals at two premiere hospitals in Singapore. Two years ago I gave a workshop for health providers of the Pascua Yaqui tribe. It was held over two days and the second day patients joined providers and together barriers dropped, communication opened and both saw a new space open in front of them.
In March of this year I presented the Flourishing Approach to the Telehealth group of NYC Health and Hospitals Corporation. There a staff of committed nurse/coaches speak weekly to people with diabetes in need of help. They, like all I have spoken to, have been delighted to hear this more positive approach and are interested in applying it in their coaching practice with patients.
I have written a number of articles on this approach. "A Flourishing Approach to Mental Health in Patients with Diabetes" in last summer's issue of the peer-reviewed On the Cutting Edge. Two recent articles on The Huffington Post include, "Chronic Illness' Opportunity for Patients and Providers" and "The Antidote to Living With Diabetes." There will shortly be an upcoming article on Sanofi DX. And now I feel fully confident that I have enough research, tested the waters and seen everywhere I present this new framework/lens and way of working and living, providers and patients have only wanted more.
So this year I will be writing my next and fourth book on flourishing with diabetes. It will provide the understanding of a flourishing framework and how - and why - we need to treat people with chronic illness differently than we do today. Moving from problem- to solution-focused. To look at what's working instead of what isn't, work from a trusted partnership, be compassionate, see the whole person and understand the context within which they live, not merely micro-manage the disease.
We must offer hope and possibilities, knowing the power of both and that there is post-traumatic growth, not only post-traumatic stress. We must explore patients' strengths and resilience, as we help them move toward a healthy, happy, vigorous, robust and purposeful life.
For twelve years I have said, "You can have a great life, not despite, but because of diabetes." Because people shared with me this is how they were living.
We can open a doorway to a new space to be with patients, and a new space for people with illness to be in, where coping is not the target or the answer, but flourishing is.
It is time.
A few days ago i saw the documentary film, Elaine Stritch: Shoot Me. I was bowled over. I first saw Elaine Stritch, singer, Broadway actress, comedian and larger than life figure, in the original production of Steven Sondheim's Company on Broadway. She stole the show.
I must have been in my twenties, I have no recollection why I was at that show, it was much too intelligent for me at the time, but anyone who saw it couldn't help but be moved by a musical number that was Elaine's alone, "The Ladies Who Lunch." She commanded the stage and her deep throated voice grabbed out to the unsuspecting in the last row.
The documentary I just saw, which is more about her present life still putting on a pair of tights and while shirt, performing at 88, shows her as just as she's always presented herself - authentically. From skipping down along Central Park in Manhattan to yelling at cab drivers, to fearing for her life having a low. She's one bawdy broad. Elaine is just one of those people, the millions among us, who has type 2 diabetes and is on insulin and has lows and sometimes ends up in the hospital.
If you want to be moved and you have an independent film theatre in your town, maybe it's still playing. Or netflix it soon.
Today, it's been raining all day and grey enough to keep me inside. and so I'm now watching her London performance from 2002 called Elaine Stritch at Liberty, a summation of her gorgeous career. This you can Youtube now.
It has nothing to do with diabetes, it's pure performance, but hey, living with diabetes, and being sixty, more and more I realize, life is not just about work, but also play. Enjoy.
I have been a fan of Dr. Rachel Naomi Remen since I first read her book, Kitchen Table Wisdom. It is a collection of stories about what she has learned from her patients. Most of whom are in the last stages of cancer.
Remen herself has lived with Crohn's disease since she was in her twenties, yet her writing and her speaking is predominantly about the blessings in life that all too often most of us only see when we are at the end of it. The power of sharing our "stories," living with a sense of wonder and honoring each other.
I was reminded of Remen by a recent contact I made, a woman who once we started talking, immediately asked me if I'd read Remen's books?
So now I am taking up Remen again. Reading one of her books I had not, My Grandfather's Blessings. Already this morning only reading the introduction, I was in tears reflecting on all the blessings I have in my own life - my husband, family, friends, work; all the kindnesses and all the heart that is webbed and woven around me.
Remen embodies bravery, speaking to doctors about how medical training is like a disease that may be necessary for health care providers to recovery from. Here she was giving an address last year to women in medicine.
How uncomfortable she notes doctors are made by their own professional culture taught to dishonor the things that truly provide healing, like connection, hope, awe and authenticity. Medical school Remen said, "does not train us to be fellow human beings."
Her stories are amazing and uplifting. They will make you see your life differently. Thank you Rachel Naomi Remen.
1 in 4 of the 26 million people walking around with Type 2 diabetes don't know they have it. And most of the 80 million people with pre-diabetes have no idea their blood sugar is higher than normal and damaging their body.
If diabetes runs in the family, you're overweight and/or not very active, you've got the three dominant risk factors for Type 2 diabetes.
Take the American Diabetes Association's Risk Test right now and find out if you're at risk for type 2 diabetes. Just answer a few simple questions about your weight, age, and family history.
If you find you are at risk, make an appointment to talk to your doctor and get a fasting blood sugar test immediately.
If you've never had your blood sugar tested, it's a simple blood draw at the doctor's office or a lab. That's all it takes.
Pre-diabetes, or what I call Stage 1 of Type 2 diabetes, is when your blood sugar is higher than normal, yet not high enough to diagnose diabetes. But you want to know if you have Stage 1 diabetes.
With higher than normal blood sugar, many of the complications of full blown diabetes like vision problems and neuropathy - a tingling or loss of sensation in your feet - may already be occurring in your body.
And within five to ten years, many people with Stage 1 diabetes go on to get full blown Type 2 diabetes.
If this simple risk evaluation, marks you at risk do something about it. Get a blood test, then find out how to start eating healthier, getting more activity and you may need medication.
The sooner you know, the sooner you can delay and/or prevent diabetes and that's something you definitely want to do.
Today Timesulin, the little company that makes this great insulin timer cap, goes live with a crowd funding campaign on Indiegogo.
If you want to send a message to the FDA that we in the States should have great, useful, life-saving products as quickly as anyone around the world, sign up at the link above.
With a small contribution, you can get one of the first caps when released in the States - and like me, find you don't wonder whether or not you took your shot. You can also get a copy of my latest book, "Diabetes Do's & How-To's."
I've been using this cap for more than two years, since the day I met John at the IDF World Congress in Dubai. I can't tell you how many mornings I sit down at this computer, start working and wonder whether or not I took my long-acting insulin shot. Timesulin always lets me know. The reason I love this cap.
Share the news - yes we can get products over here that we want and need faster by pulling together.
Would it surprise you to know, Timesulin is already in 40 countries around the world? Be part of the solution and you and millions will benefit.
Here's my solution for diabetes burnout. Pick up a book with Haidee Merritt's fabulous, funny, satirical cartoons.
After all, we've all heard it, "laughter is the best medicine." And, once you:
• know how many pills/insulin to take for each meal and snack
• test your blood sugar ten times a day
• get your hour power walk in
• bypass that chocolate muffin for a carrot
• do some hot, sweaty yoga to get rid of all your stress
...you are definitely ready for a belly laugh. Just don't look down at your belly while you're taking it or you'll be upset all over again.
I've been married almost twelve and a half years. That's significant for two reasons. My husband is Dutch and in Holland they celebrate twelve and a half year anniversaries - half of 25 years. And, I didn't get married 'til I was 48, so this may be historic. It was my Virgo pickiness.
Truth is, there are times I'd like to act on what my Aunt told me on my wedding day. "Just don't be surprised, Riva, when you have a day where he's standing in front of the window and you have to stop yourself from saying, "Just back up a little honey..." I've told him that story; it makes him nervous, and makes him laugh.
But most often my love, our love, brings up memories of a documentary I saw on PBS while we were engaged. I watched it alone, he was in Holland.
It was about couples who'd been married more than 25 years. I remember at the time, even though we were engaged, I thought, 'Really? Can you really be married more than 25 years and still be happy? Have something to say? Not be bored? How's that possible?
But there they sat, most couples hand in hand, grey-haired, glasses slightly askew, wrinkled, grinning, "I couldn't live without her," he'd say. Usually the man said it first; men are such mushes at that age. She'd poke him in the ribs. And smile.
So Happy Valentine's day honey. We still do find something to say, most days. And when we don't, that's okay too. I've come to know that's part of the contentment of being known and seen, accepted and loved. Amazing.
And happy valentine's day to everyone out there, married, engaged, partnered or single. I once read the way to get love is to give it away. So true.
So I give it away every day twelve and a half years later. Of course I also keep the window open.
This is my report from three weeks in Bangalore, India, working with a clinic that serves the poor with diabetes. Almost 30% of India's population are illiterate, and 70% live in rural areas. India has the second largest population growth of diabetes.
I realize I’ve never been to the third world before. Jakarta, Taipei, Bangkok, Gualin, these places, or at least where I was in these places, was second world. But here in Bangalore I have entered the third-world worm-hole and I am overwhelmed.
I arrived a week ago. It wasn’t at the invitation of Erin Little, an amazing 27 year old American woman who’s single-handedly, with the help of one of India’s most renown diabetolgist’s,. Dr. S. Srikanta, developing and executing a leadership program for community village health workers here. No, when I heard about this from Erin, I invited myself.
So here we are. We being my incredible husband and me. Here in an airbnb Homestay for which I’ve just bought my first-ever pair of flip-flops; the shower floor is so squishy I can’t bear standing on it without shoes. I’m afraid to touch the walls because they’re grimy with decades of caked grease and dirt. The single blanket has burnholes, the linens are stained even after they’ve been washed, we take a pill with each meal to try and avoid getting ill, boil the water to brush our teeth and wash the dishes and I’d say I have a good case of the heebie-jeebies.
Most of the furniture is broken. The lighting is single sockets most of which are without bulbs. The wall décor consists of wires hanging out of holes. No closet door hangs properly or closes, and you don’t want to open the kitchen drawers. My husband and I did not come sponsored, we did not stay in a 5 star hotel; we lived like the local population. We wanted to contribute and make life better for people with diabetes, and yes, it is third world. I know there are worse apartments, but as uncomfortable as I am inside, I am more so outside.
The advantage of our residence is we are only a seven minute walk to the diabetes clinic where Erin is living and Dr. Srikanta works from sun up to midnight taking care of Bangalore’s poor and wealthy, many of whom have diabetes.
Bangalore traffic is murderous. Motorbikes, rickshaws, taxis and private cars all following their own personal driving handbooks. We are on an amusement park ride every time we get in a tiny open rickshaw. I feel for the seat belt continuously, which doesn’t exist, as drivers and pedestrians expertly, yet heart-stoppingly, come within, literally, an inch of each other, every few feet.
Yet the seven minute walk to the Jnana Sanjeevini Medical Center is strewn from start to finish with garbage. There are small fires along the walk acting as garbage disposal. Yesterday two ravenous crows were tearing apart a rat. The dogs are thin and haunted. The air is filled with dirt.
By time we arrive at the clinic I have breathed only garbage, so much of it, it feels like I am chewing dirt. All these signs are how I know now I have never been in the third world before. I also know somehow there is also a fourth world where this would be heaven.
Me and Erin Little.
The clinic is an oasis here. It is open to everyone and it is served by a committed, well-trained, passionate group of doctors, educators, administrators and volunteers. The clinic was also closed for two years when Dr. Srikanta would not pay extortion money. Retalience was bombing part of the front of the clinic. We are reminded of this each time we step over the rubble in front and are greeted with smiles and “good mornings.”
Once inside the clinic, I am distracted from the poverty outside and reminded why I am here. The dedicated staff and volunteers, work tirelessly. Everyone wants to give, to help, to improve the lives of their patients, neighbors and extended tribe.
Dr. Sri and some staff members below as I show them my Dexcom CGM.
They want to learn from me - what I teach in America about managing diabetes, how to inspire behavior change, creating a new space for patients to move into where, while not “cured,” healing is possible. And, how I live as a successful patient - how and what I eat, how I manage my blood sugar, how I’ve had type 1 diabetes for 42 years, am "sixty years young" as they say here and have no major complications. Of course I joke with my husband by time we leave I will look sixty. My hair feels like straw from the water; I fear my face will be marked by every bit of garbage burning in the air.
I spent the Sunday after I arrived here giving a workshop for the children who come to the clinic with type 1 diabetes, and their parents. Some come from two hours away, on several buses. They come the first Sunday of every month.
Needless to say, having a girl from Brooklyn standing in front of them was not an everyday occurrence. I know I gave them a sense of hope seeing one can live well with type 1 diabetes. I gave them a sense of pride as I taught them the raised finger salute I learned from Jason Baker of Marjorie's Fund, that one can have type 1 and be proud.
Although, sadly, I have since learned with only access to older insulins and one test strip a day from the clinic, 80% will not live to be eighteen. To be sure they gave me more than I could give them; a reason to keep doing the work I do.
I came both to teach and to learn and I am learning more than I could have imagined. Daily my husband and I go to the clinic and sit in on patient consultations. I have been invited to share my observations of how they are doing and what can be improved. It is an exchange of learning on both sides.
One afternoon we accompanied Erin and several staff members from the clinic to a village two hours drive away. Erin’s mission and work, through her non-profit organization Sucre Blue, is to train local village women in rural India to survey their village people’s health and then have a mobile team of doctors and educators come provide medicine, care and counseling.
Sitting on an outside floor of dried cow manure, I watched as villagers arrived from across the road to have their fingers pricked for the first time in their lives for a blood sugar reading, had their blood pressure taken, stood on a scale to record their weight and were then given instructions from the doctor along with any necessary medications.
I watched all this, as I lifted my Dexcom CGM discretely from my pocket to see where my blood sugar was in that moment. It was other-worldly. But it is programs like this that can potentially change history, and more importantly, provide futures.
Here, in this place where many are poor, have difficulty affording vegetables, eat a traditional high carbohydrate diet, do not have a concept for self-management, where women put themselves last, there is so much work to be done. This is when you know the difference between first and third-world.
While Erin, who has been in India for several years, is dedicatedly, back-breakingly picking up stones to clear paths to better health, I came to offer ideas about working with patients so that they flourish, change behavior and create healthier lives. Remarkably, my ideas, new and alien here, have also been seen to have stone-moving power, and have been received with open arms and enthusiasm by Dr. Srikanta and his staff.
In fact, toward the end of our stay, Dr. Srikanta felt what I offered had the means to provide a true tipping point for enabling and inspiring patients. He proposed that we do a six-month patient study. The doctors and educators would employ my flourishing methods and tools that I have shared with them to help a control group of patients flourish. Another group would be treated as usual. Within a day the staff decided not to go ahead with the study. They felt it was unethical not to share these tools with all patients. That is what they plan to now do and see if the positive results they have achieved from their practice with these tools continues.
During my time here I have given six mini workshops and lectures - about leadership both in how to work with patients and inspiring patients to be leaders in managing their own diabetes. I have spoken to the children and their parents, to the doctors and educators at the clinic and to doctors completing a certificate program on diabetes to expand their knowledge. I have been accorded the respect of a wise elder.
Yet it is a long road before them to travel. Here in Southern India I have found food to be a constant challenge to manage my own diabetes. The diet is largely vegetarian consisting of enormous amount of carbohydrate: rice, dal, lentils, nan, roti, pakora, lentil pancakes, peas, and curries swimming in oil. I must also admit my surprise my first day at the clinic when served coffee and masala tea both heavily sugared.
I immediately asked if they could make it for me sugar-free. “Sugar-free?” they asked uncertainly. “Yes, please, I have diabetes.” And I smiled. And that is how it has been coming for me. The patients and staff continued to be served sugar-rich coffee and tea as it is traditionally taken.
Tradition runs much of India. Tradition keeps the diet from changing. Pressing the point about lowering carbohydrates for better blood sugar control, I was told, “The Gods would be angry if we don’t eat these traditional foods.”
Also poverty makes vegetables hard to buy and prepare for a family. 70% of the population lives in rural areas and make little income, and a culture of others taking care of you makes the concept of self-managing diabetes unrecognizable.
Can you talk about flourishing with diabetes in a third world world? I don’t know. Yet even here in a culture up against so many obstacles for diabetes health, an educator bounded up to me the day after I gave out an exercise for the medical staff to do with their patients, all smiles. She had done it and seen the smile on her own patient's face as she had him discover his strengths.
So it seems even here you can use the principles of “flourishing” to create better outcomes. That medical professionals can create greater rapport, help patients focus on what they’re willing and able to do, help them see their strengths and use them to take a step forward, provide hope, raise happiness and build confidence - all of which motivates more positive action. These principles cross cultures, I think, because they appeal to the most base instincts in all of us.
I know, like those at the clinic, I am making a difference. In a place where cows wander the streets, beggars follow and touch you for blocks with their outstretched hands, here among the shantytowns where mud and straw huts have laundry hanging on them, something in one small clinic is changing.
Like the story of the boy on the beach surrounded by starfish that have washed ashore. As he tosses a starfish back into the ocean, a man comes by and asks, “Boy, what are you doing?.” When the boy says, “I am putting the starfish back into the ocean.” The man responds, “Child, there are thousands of starfish here, you cannot possibly make a difference.” Tossing another starfish back into the sea, the boy responds, “I just made a difference to that one.”
Leaving Bangalore I have felt and seen the difference I have made and Dr. Srikanta has told me he wants to continue to work with me to spread the idea of flourishing with diabetes throughout India. And just perhaps, my greatest legacy is the clinic now only serves sugar-free coffee and tea to everyone.
You can see more photos of this journey on my Facebook page
We spent last weekend, and will spend this weekend, in the Blue Mountains of Australia. Two hours from Sydney, it's a stunningly beautiful area, graced with a huge variety of shades of blue and green trees and other foliage, thus its name.
Of course we knew our friend's property had suffered a terrible fire two months ago; the worst fire on the mountain in 50 years. She saw it unexpectedly roll right over her hilltop and then carry its blaze quickly and decisively. She worked all night tip 2 in the morning, with the volunteer fire brigade and neighbors, to save as many trees as possible, and her home.
The house is untouched. 15 acres of trees are burnt. As we walk the trail behind her house we see many uprooted, hollow. The community of 200 residents on the mountain, who pitched in in every possible way, are closer than ever. And my friend? She mourns the loss of all the work she had invested planting trees and vegetables, creating an amazing flower garden, and now having to start over. Of course there are economic costs as well.
Luckily, being the stalwart individual she is, she is also able to see a certain beauty in what remains. The charred trees are a panorama in black, grey and orange. Their shapes are quite remarkable. And many are going through a process of photosynthesis; green and red leaves (how perfect for Christmas) are sprouting along their trunks.
Like the trees' display of resilience, my friend appreciates the view now open of the mountains around her and she is working with renewed vigor and focus to rebuild and reshape.
Of course I would tell you there's a message here for living with diabetes; to rouse ourselves to see something beneficial from our new state and have a deeper appreciation for all we have and a renewed commitment to rebuild and reshape our lives. Resilience, the power of nature and very human.
Happy Holidays. I hope you enjoy all the gifts all around you, particularly those that come not tied with ribbons, but with open hands and hearts.
The IDF World Congress in Melbourne closes today, and it's been a delightful five days.
For me, it began with my address to the "Young Leaders" Friday night - 137 diabetes advocates between the ages of 18 and 30 from 70 countries who are working to increase diabetes awareness, education and healthy living in their country. If you spend an hour in a room with them, you will marvel at how passionate, committed, mature and hopeful they are.
I addressed the Young Leaders as Novo Nordisk's Keynote speaker and then facilitated a workshop to help them develop their personal stories of living with diabetes and include some of the major findings from Novo's DAWN2 (Diabetes Attitude, Wishes and Needs) study. Predominantly to live well patients need: 1) Family involvement and support; 2) Education and 3) Fair Treatment.
Being quite honest, in some ways it's a double-edged sword to come to a diabetes conference. To sit for five days and hear lecture after lecture about the biology, medicine, devices and psychology of diabetes On the one hand I am lifted by the work being done in the field - and the passionate, caring, genuine experts who are wedded to the cause. I revel in learning what is new, about the advances we've made, those around the corner and five and ten years off, and I am among my own. The easy new friendships and conversations that spring up are a rare treasure.
Yet, I am also reminded non-stop of my condition: that no matter how hard I work managing my type 1 diabetes there are no guarantees for a continued healthy future. By its very nature, while we try to control the beast, blood sugar is unpredictable and intense management, while our best card to play, is to some degree a wild card. It was upsetting as well the first few days to learn at this conference that two of my fellow diabetes advocates, even with all their hard work managing their diabetes, each have a new complication. Yet, I have also heard some positive news, that longevity with type 1 diabetes does not necessarily mean you will get complications. In the end, all we can do is our best each day.
So what have I learned? That the IDF have two inspiring stewards, President, Sir Michael Hirst, whose own daughter has type 1 diabetes, and new CEO Petra Wilson. That both are committed to the cause and come with many skills, talents and new ideas.
With Sir Michael's background in Parliament, he aims to help reform governmental and environmental policy to make healthy choices easier. Wilson's tech and healthcare background at Cisco will serve her aim to improve the reach and efficiency of healthcare through online technology.
I have also learned that:
• Too many healthcare providers (HCP) still talk in terms of patient "adherence" and "compliance."
• The behavioral sessions were too small for the overflowing crowds that couldn’t fit in the room.
• HCPs think they involve their patients in their treatment while patients largely do not.
• Diabetes only continues to increase around the world and insulin is still in short supply in third world countries.
• We have more evidence showing the value of a closed loop system for better blood sugar control and less hypos and so we continue to inch toward having a mechanical "cure," and that the tools we use today, while a giant leap forward from decades ago, are still enormously primitive, leaving us again only to do our best.
And so I have come to an awakening. That those of us who have type 1 diabetes, particularly those of us in positions of advocacy and influence, as educators and role models, are, while trying to show the world how we can do anything with type 1 diabetes, unintentionally hiding how much work it takes and how unpredictable it is.
So I hope to never hide again the fact that my blood sugar is going low before giving a presentation, or that I didn't properly dose for a meal I had no knowledge had hidden sugar in it, because I have to be a "perfect diabetic."
Because when I do hide those things, I am denying the very nature of type 1 diabetes, and inadvertently, denying my fellow patients and the general public, what I want them to know. That the often unreinable blood sugars of type 1 diabetes are often not our fault, and that both exist - I can thank my diabetes for much it has given me and its management takes a great deal of discipline, hope, humor and dedicated effort.
With that, I leave you with some images from the week, enjoy.
I'm in Melbourne Australia where Friday night I spoke to 137 young people from 70 countries, largely with type 1 diabetes. They are known as the "Young Leaders" and are part of a program sponsored by the International Diabetes Federation (IDF).
Tomorrow IDF's World Congress brings together 10,000 global health care professionals, members of industry, pharma, patients and media who have gathered to hear about the latest advances in diabetes, treatment and education as diabetes only continues to grow at rapid rates around the globe.
Yet while diabetes seems to run rampant with no end in sight, Friday was an enormously special evening. I was the kick-off speaker for Novo Nordisk, one of the largest pharmaceutical companies, if not the largest, headquartered in Denmark. And it is also an exceptional company. Their mission and values include helping patients manage the psycho social aspect of diabetes.
From 2011-2013 Novo conducted an impressive study on what patients need emotionally to live healthy lives with diabetes. Top findings were: 1) family involvement and support, 2) Education and 3) Fair treatment. The study, called DAWN2 (Diabetes Attitude, Wishes and Needs) follows an original DAWN study conducted by the company in 2001.
Throughout the World Congress this week DAWN2 study results will be shared with attendees. But Friday night they were shared exclusively with the Young Leaders.
Following, I had the distinct pleasure to co-facilitate a workshop to help the Young Leaders develop their personal "stories," and with the major findings from the study, create powerful, persuasive messages for their advocacy.
As I told the group, our stories of living with diabetes are one of our most powerful tools to elicit change. They are the string that goes out and ties us together, inspires hope and possibility, and moves mountains - which is frankly what we need today and in the coming years to stop this epidemic.
I am especially gratified to know that these young leaders will be moving mountains when they get back to their home country. And, frankly, that inspires me.
As Diabetes Month closes, this is the title of my latest article on The Huffington Post. I believe it with all my heart and so want to share it with you perhaps as an early Thanksgiving gift.
"...for me, having lived with Type 1 diabetes almost 42 years and with no end in sight, I have to find hope somewhere. So I take it in the attitude I've adopted: You can have a great life, not despite but because of diabetes.
Don't get me wrong: I am not denying the work, the hardship and the fears diabetes brings or it's potentially damaging consequences. I am suggesting what Randy Pausch told us in his "Last Lecture" and what Michael J. Fox has been telling us since he got Parkinson's. That you can make meaning from tragedy and find not just a way to bear it, but joy in a meaningful life.
I have used diabetes as a catalyst to create a purposeful life: to become fitter, stronger, more compassionate, passionate, bolder, less fearful and help others. Many others have told me the same."
To read the full article click here.
Yesterday I had the pleasure of speaking to 80 people involved in, and committed to, the development of medical devices. I was addressing Sanofi's global device developers offering the "Patient Perspective." How I interact with devices - how they help me manage my diabetes, and my life, where they let me down and what else I'd like to see.
For me, it's always a joy to share what living with diabetes is really like, and help others understand the good, the bad and the ugly. I calculated that living with type 1 diabetes 41 years, I have taken 76,115 shots and 60,972 finger pricks. I have spent over a billion seconds of my life calculating how many carbs are in what I eat, when I will take my walk, whether I need to refill my scripts, see my doctor, take a correction shot and on and on.
The heads nodding in the audience told me they either "got it" or their eyes were being opened. I also shared my views about what devices I use - glucose meter, Solostar insulin pen, Timesulin insulin pen cap, ACCU-CHEK Multiclix lancing device, Dexcom G4 CGM and a low-tech little key chain that carries 4 glucose tablets.
The t:slim insulin pump was on my "cool" list, looking as it does like an iPhone. And the Lantus Solostar and Apidra insulin pens on my "oops" list. So similar in design and color, I know too many patients who have confused them and landed in the hospital.
In the end, my advice for Sanofi's team to better know how to design products we want to use is to "Be a patient." La vida loca, "live the (crazy) life" of someone with diabetes. Check your own blood sugar 8-10 times a day, log your blood sugars and count carbs in your meals.
And spend time talking to people with diabetes. How else would you know why I love my CGM (affectionately known as "Pinkie") yet don't use an insulin pump?
My parting image was this little girl up there - me at three. She had no idea diabetes was coming down the pike in 15 years; that that diagnosis would change her life forever.
Yet, she and I are hopeful for the devices that will still come. And the one I'm truly waiting for is the one that lets the one I use most often, my brain, retire.
It will be the device that when I'm walking, eating, watching a movie, standing on line at airport security or making love doesn't have me wondering, "What's my blood sugar now and what do I have to do about it?" Because it has already taken care of it for me.
As we approach the eve of Diabetes Month, November, I think it funny that my recent episode with my insulin pen ended up the way it did.
Last month I spent ten days in Scandinavia. I packed all my diabetes supplies and I had a few days left on my Lantus Solostar insulin pen and packed a second pen.
When I went to use my new Solostar pen, the pen jammed: I couldn't press the plunger and get any insulin out of it. This has never happened to me before. Given this had been my back up pen (well, for the first few days of my trip) I had no back up pen.
My husband and I went to a local pharmacy in Copenhagen where the pharmacist was very friendly and accommodating and said, even without a prescription she would sell my a new Lantus Solostar pen. The trouble was I couldn't get one. They come in boxes of five and I would have to purchase five pens for the equivalent of $120.
Well, that was not my idea of salvation, so I decided I would just withdraw the insulin from my pen with a syringe until I got home. And that's exactly what I did and basically it worked fine.
The funny thing is when I got home I called the number for the Solostar pen to register an adverse event and I was told I would be sent a replacement pen, thank you very much, and I might need to return the faulty pen so they could see what went wrong. FYI, the rep told me on the phone, chances were the pen needle somehow was blocked, which caused pressure to build up in the pen and didn't allow the plunger button to work.
Two weeks later a huge box arrives at my door. It contains what you see here. A number of bags marked "biohazard" and a tube. I am to put my Solostar pen in the tube, and then put the tube in the clear bag and then put the clear bag in a paper bag and then put the paper bag in a box.
I am aware it is law that when someone is dispensing insulin in a hospital they must be accompanied by another someone. Yet, it struck me as funny. We, who live with diabetes and use insulin, do so so casually, we would never think of it as a biohazard. That is not to dismiss insulin's side effects - possible low blood sugar which can be dangerous. But the every day taking of insulin, is something we do all the time and don't have to put on a zoot suite to do so.
It's just a little strange when the scientists decide insulin cannot be handled in transport other than locking it in three vessels because it is potentially so dangerous.
Ah, just another example of the disconnect between those in the lab and those of us on the ground.
Last Saturday I spoke at the launch of Marjorie's Fund in New York City. Marjorie's Fund is a non-profit organization founded by endocrinologist, Jason Baker, a person himself with type 1 diabetes, and just featured in Diabetes Forecast as "People to Know in 2013." And deservedly so.
Until now Marjorie's Fund has dedicated its energies to empowering youth and adults with type 1 diabetes in Africa by providing resources, education and supporting relevant research. Marjorie's Fund was actually named after a young woman Dr. Baker met in Uganda, who hard as she tried, given the lack of resources, died at 29 from kidney failure, a consequence of her type 1 diabetes.
The three hour event gathered about 75 people with type 1 diabetes and their loved ones - parents, spouses and friends - at Chelsea Piers in Manhattan. The event had a triple purpose: to help introduce PWDs (people with diabetes) to local resources, create community and celebrate those we hold dear who support us each day.
Yet, in that list of supporters, I left out a significant source of support - our children. And, I hadn't really thought about it until 16-year old Hannah approached me and introduced herself and her dad who has had type 1 diabetes for 41 years. Same amount of time as me.
I was truly moved by the loving relationship between Hannah and her father and realized, not having children myself, that children who have parents with diabetes, particularly type 1, are both a source of support and impacted by their parents' diabetes. It must be frightening to see your parent exhibit any of the symptoms of low blood sugar or at times heart-wrenching to see them check their blood sugar multiple times a day, every day.
Wanting to help other young people whose parents have diabetes, Hannah created the website KIDDs, Kids of Insulin Dependent Diabetics. It culls resources, basic information and gives you, if you are the child of a parent with diabetes, a place to be with others who share your experience.
As we parted, Hannah's father and I agreed that we're going for our 50 years with diabetes Joslin medal. I'm hoping Hannah will join us at the celebration dinner. Who knows? Maybe by then she'll have kids of her own!
When I read something useful in the diabetes biosphere I want to make it known and accessible to you here.
Today's post on DiabetesMine well captures a number of upcoming events for next month, Diabetes Month.
One event I will single out is the Big Blue Test. If you have diabetes, are mobile, and haven't participated in the test yet, you owe it to yourself to correct that.
No, no dates and facts to study. Rather, you will see first-hand how just 14 minutes of an activity of your choice lowers your blood sugar.
And, as we roll into Diabetes Month, if you missed it, here is my list of great diabetes resources. After all, I always tell fellow PWDs, "the more you know the better you do."
And, while somehow I mistakenly omitted DiabetesMine.com, a top news- reporting site from my list, I read it almost daily to know what's going on regards devices, meds, the FDA and all things diabetes.
I read a lot of stuff about diabetes, and everything related. And I have a particular interest in food as it relates to diabetes, health and weight. Don't we all?
"Fats and Cholesterol: Out with the Bad, In with the Good", an article from Harvard School of Public Health, is one of the best articles I've read in a while on the topic - it's easy to read - and it expresses what I think to a tee.
Primarily, that America got fatter when we took fat out of foods and put sugar in. That we have become obese, not due as much to eating fat, as eating refined carbohydrates. And yes, bad fats like Trans fats found in most fried and baked goods, are bad for you, but good fats like avocados, nuts and olive oil are healthy and your body needs them to function properly.
This is relevant whether you have diabetes, heart disease, high blood pressure, want to lose weight or frankly, in my book, are just walking around on the planet.
Here are a few major take-away messages from the article:
• Bad fats, meaning trans and saturated fats, increase the risk for certain diseases. Good fats, meaning monounsaturated and polyunsaturated fats, do just the opposite. They are good for the heart and most other parts of the body.
• When people cut back on fat, they often switch to foods full of easily digested carbohydrates—white bread, white rice, potatoes, sugary drinks, and the like—or to fat-free products that replace healthful fats with sugar and refined carbohydrates. The body digests these carbohydrates very quickly, causing blood sugar and insulin levels to spike. Over time, eating lots of “fast carbs” can raise the risk of heart disease and diabetes as much as—or more than—eating too much saturated fat.
• It’s important to replace foods high in bad fats with foods high in good fats—not with refined carbohydrates.
It's worth reading the entire article and if need be making some adjustments in your diet and see if they don't benefit you.
You know checking blood sugar, and keeping it in your target range as much as possible, is the single most effective way to live well with diabetes and minimize and/or prevent complications.
The great people at diaTribe, headed by the amazing Kelly Close, are sponsoring a giveaway with a Grand Prize of a year’s supply of test strips –18 boxes of 100 strips to the winning entrant. 19 runner ups will also win one box of 100 strips each.
Not only is this a great gift, but if you don't know diaTribe you should. It's a fantastic resource for patients and health care professionals alike to find out what's going on in the diabetes industry, pharma, and what medicines and devices are in trial and coming in the pipeline.
Enter now, the giveaway runs until September 30th.
Also, diatribe is sponsoring a petition to the FDA to include diabetes as one of the 20 illnesses for a grand scale patient meeting - to gain a better understanding of diabetes and the needs of those who live with it.
I encourage you to sign the petition if you haven't already.
Robert Lustig is a pediatric endocrinologist at the University of California, San Francisco who is carrying the charge that fructose kills. I've just spent the afternoon listening to a radio interview he gave recently, watching his lecture, "Sugar: The Bitter Truth," and watching a series of YouTube mini documentaries he gives about obesity.
In short, Lustig says sugar, specifically fructose, is a toxin given the way our body biochemically metabolizes it. That it actually turns to fat and that obesity is not the cause of metabolic diseases like Type 2 diabetes, hypertension, cardiovascular disease, fatty liver disease, but a marker of these. 20% of obese people will never get one of these diseases.
I agree with Lustig about sugar and refined carbohydrates being our undoing. If you read my new book, Diabetes Do's & How-To's, I emphatically say fat is not what makes us fat but sugar, or refined carbohydrate. Carbs cause the body to pump out excess insulin (a fat storage hormone) and carbs we don't burn get stored as fat. Lustig will tell you the 6.5 ounce Coke that has morphed into the 44 ounce Big Gulp is the devil incarnate.
Twenty five years ago when America went on a low fat diet, people's diets reduced in fat Lustig says from 40% to 30%. That doesn't sound like much, but what happened is the carbohydrates we consumed skyrocketed. Take the fat out of food and it tastes like cardboard. Put sugar in and consumers won't notice. In fact, they'll like it so much, they'll eat even more to it! Food manufacturers are not stupid.
In fact, they are ingenious, and spend millions of dollars perfecting recipes that get us hooked on the sublime combination of sugar, salt and fat. But Lustig's biochemistry lesson will help you understand why fructose is so especially causing our out of control obesity.
Lustig's proposition is that we could not have, as a nation, and now as a global society - with American fast food now exported everywhere and the rise in obesity paralleling it - gotten obese merely from eating more and moving less.
No, he will tell you it is about what's in our food and how the body uses it. "A calories is not a calorie," says Lustig, yet he says they teach dietitians just the opposite the first day of school.
I am consumed (yes, pun) with this debate: what causes obesity, how are our modern day chronic metabolic diseases impacted by what we eat, obesity and how food is being reengineered and what role our environment plays. Where does personal responsibility figure into this and what responsibility does our government and food manufacturers have? A lot in my opinion, yet everyone's hand is in someone's pocket.
Personally, I believe if we cut refined carbs out of our diet, including sugared beverages, and ate real food - not processed or packaged - but things that grow on trees and in the ground, relatively untouched by human hands, and animals that are responsibly raised, we would not have an obesity epidemic.
I turn 60 tomorrow. How did that happen? My mother's probably asking herself the same question up in Connecticut. I'd say just putting one foot in front of the other every day. But the occasion does give me pause to think about what I've learned so far.
(By the way, this picture was two years ago me shooting up before my meal. My friend P. to my right looks a little startled, but then I'm a teacher and this was a teachable moment.)
It hasn't all been easy. I was a shy and quiet kid. People would tease me by saying I was talking too much. Today I speak to all kinds of groups, small and large and love it. No one who knew me then would imagine me now. But my deepest desire always was to help others believe in themselves. Today I do it around diabetes which I could have never predicted.
I couldn't ask to be in a better place on the eve of my sixtieth birthday. I am married to my true partner in life, in love and in work. My parents are still here. I have a treasure trove of dear friends, and acquaintances who bless me with their fellowship through diabetes. I love where I live, which was a lifelong riddle to solve. And I travel voraciously. To towns large and small across the States, as an A1C Champion, which I love and across the ocean. That's what you get for marrying a European. How lucky he, and his frequent flier miles, fit right in with my wish list. And growing up a listener serves me well in the work I do today, as a health coach, writing on The Huffington Post, writing books and speaking at conferences and as a peer-mentor.
Turning fifty was a hard one. It was the first time I realized there was more time behind me than in front of me. But even though that's even more the case now, I'm kinda tickled to be turning sixty. I think of all I've accomplished and where I'm so contentedly sitting in my life right now.
So tonight, looking back on six decades - true, I don't remember the first several years, alright let's be honest, the first decade - I realize maybe I've learned a few things worth passing on to my younger friends and colleagues.
5 Lessons I've Learned Along the Way
1. Don't measure your success against anyone else's. In my twenties I was jealous of how many people around me were clear about what they wanted to do, were on their path achieving so much. I felt I was floundering. Searching for what work I was meant to do, where, how. What cured me of that was when a friend I envied, got a tumor. Surprisingly, I nursed her through it. But I realized, you don't know what's on anyone's road ahead, including your own, good and bad. Just be on your road.
2. Look for the silver lining. I got type 1 diabetes at 18. I've had it 41 and a half years. I was misdiagnosed initially as a type 2; after all only kids get type 1. The first decade I had it there were no meters to test my blood and we knew so little about food, etc. But having been there, I'm so grateful I'm here. And I see what I've gained from having diabetes - a commitment to my health. I'm convinced I wouldn't eat as healthfully as I do, walk as I do or keep myself trim and fit if not for diabetes. And maybe I wouldn't have fulfilled my need to find purposeful work. Most days I truly look at what I have, not what I don't.
3. Be kind. If I do one thing passing this way in life I hope it's that I'm kind. It's selfish; I like making people feel seen, whether it's my waiter or the girl who checks out my groceries at the supermarket. At my first job in public broadcasting a colleague taught me this lesson unknowingly. I would watch her make the guy who parked her car feel equally important to the President of the company. She talked to them both with the same regard.
4. Savor the simple stuff. I think this is something that comes with age. When I'm cooking in the kitchen listening to Sade or Patti Austen, sipping a glass of wine, and my husband is working feet away in the living room (a tiny one bedroom city apartment) I am happy. These are the moments they tell you you will recall in the end. I believe they're right.
5. Pat yourself on the back more. I think women especially are enormously critical of themselves. We're not enough, we don't measure up, if we fail, why did we even think we could do it in the first place? If we succeed, we got lucky. Fuggedaboutit! You are a gem, maybe a diamond in the rough, but a gem. Cherish daily accomplishments, and your efforts. Whoever made us think we were supposed to be perfect at everything?
When I was 18 and diagnosed with diabetes, it was unreal. One pill a day and "don't eat candy" kept it unreal for years. As it sunk in, I mourned the complications I would inevitably get and the 15 year shorter lifespan I was told I'd have.
Hmmm, I haven't got any complications, and I no longer expect my life to be any shorter than anyone else's.
When I was 54 years old my good friend, Deborah O'Hara, died from cancer. She was only 59, and my first good friend to die. Funny, she came from a small town in upstate New York but we met in Asia. She lived in Hong Kong and I lived in Tokyo and our work made our paths cross.
We don't know what's on our path. But when my mother calls me tomorrow and says, "How can I have a 60 year old daughter?" we both know it all goes too fast. You'll know this as you see more grey hairs.
You may have to wait before these five lessons mean anything to you, I did. But, I just wanted to share. With that, I'm off to roast some cauliflower and broil the salmon. While listening to Josh Groban and sipping a nice bright white from Spain.
I returned Saturday night from the annual conference of Diabetes Educators, this year in Philadelphia. While there were fewer educators there than in year's past, around 2,900 rather than 3 or 4,000, probably due to budget cuts, it was a pleasure for me to see so many people I know.
There were many from the DOC (Diabetes online community) including Cherise Shockley, Scott Johnson, Manny Hernandez, David Edelman, Amy Tenderich, Lee Ann Thill, Kelly Kunik, Kerri Sparling, Bennet Dunlap, Haidee Merrit, Hope Warshaw and more, where do I stop?
Cherise and Scott led a DSMA twitter feed evening where everyone was answering patient call in questions. And all these guys I've just mentioned have diabetes blogs - just google them.
There were people from industry I always like to see including Rob Muller from Roche, Andreas Stuhr and Laura Kolodjeski from Sanofi, reps from my own A1C Champion group, Anna Floreen and Bill Woods from Glu.org…and on and on.
There were 1,000 exhibitors in the exhibition hall. And there were educators. An impassioned group of professionals. Gary Scheiner, educator extraordinaire was awarded the 2014 Diabetes Educator of the Year award and my friend Claire Blum won AADE's technology award.
While there was a smaller turnout, I felt some winds shifting in the diabetes landscape. Now when presenters used the words, "adherence" and "non-compliance" they did so making fun of those terms, realizing this is no way to categorize patients.
The loud saw of being "patient-centric" and using "motivational interviewing" seems to be subsiding. And actually my own presentation, "Dancing Together: The Power of a Relationship-Centered Approach," introduced the paradigm of working together, HCPs and patients, talking, exploring, in a compassionate partnership to ultimately design treatment plans - together. That there is a time to teach and a time to listen. A time to be and a time to build. That motivation is nice, but skills are necessary and often overlooked.
Roche generously sponsored giving a copy of my book, "Diabetes Do's & How-To's" to the 141 educators who attended the presentation, and I thank them.
For highlights of what was on view in the exhibition hall, take a look at Amy Tenderich's review.
diaTribe is a free subscription online newsletter from Close Concerns. I love reading it each month to get a current view of new medicines and devices in the pipeline and coming down the pike.
This month's issue features an interview with Dr. Jack Lord. Lord was the first Chief Innovation Officer at Humana, one of our largest health insurance companies. Lord cites the physician-patient relationship as a major tool for improving care and gives credit to the United Kingdom for using "patient-experts" to help mentor and teach newly diagnosed patients. Something I fully feel we should be taking advantage of here.
For more on Lord's views, new strides being made on the artificial pancreas, Adam Brown's report on 10 tips for changing habits and what came out of the American Diabetes Association's recent scientific conference click here.
On our way to Diabetes Day, November 14th, the International Diabetes Federation just released what many consider an extremely controversial public service announcement.
IDF has received some heated debate on YouTube and their social media platforms.
The intent of this 50 second animated PSA (public service announcement) is to challenge the general public to see diabetes in a different way, to understand its seriousness, break stereotypes and encourage everyone to learn more about diabetes.
IDF says they hope to open people's eyes, including funders and politicians, to do more research and improve health outcomes for people living with diabetes.
Perhaps as the quote goes, "It doesn't matter what they say, as long as they're talking about you." Personally, I would have liked to see more emphasis on hope and solutions: the fact that we have the power, through healthy actions, to greatly increase our odds to live a relatively full and healthy life. Is diabetes serious? You bet! Can it cause awful complications and death? You bet! Can you do something about that? You bet!
That's the message I'd like to see and that it takes both personal responsibility and governmental and business support to make it easier through access to healthy foods and parks and playgrounds.
But I do applaud the fact that the IDF stuck their neck out and took a chance knowing what they were doing would raise eyebrows. See for yourself below.
The latest TCOYD (Taking Control of Your Diabetes) online newsletter features my new diabetes survival guide - "Diabetes Do's & How-To's" - on its back cover. My thanks to all my generous friends at TCOYD and Dr. Steven Edelman, its founder. Read the whole newsletter and start learning.
I interviewed Dr. Edelman as a diabetes change leader on The Huffington Post. He created a true breakthrough - the delivery of diabetes education directly to patients via conferences. Don't hoard conferences just for doctors was his enlightened thinking. For while Edelman is a doctor he has also been living with type 1 diabetes since the age of fifteen.
I also found my whole thinking about my power to live well with diabetes change when I attended my first TCOYD event. That was back in 2005 in San Diego. I was sitting in CDE/Psychologist, Bill Polonsky's session. He said, "Diabetes doesn't cause blindness, heart attack, amputation. Poorly controlled diabetes does." Today he often says, well controlled diabetes is the cause of nothing.
It made me realize my actions largely control my illness and I have power over my actions. Take good actions and you will benefit. I began using my power: eating healthier, eating less and walking more. The results have paid off and I see it each year when I get my blood work done.
I highly recommend getting to TCOYD's one day event, even if you have to travel. You will learn so much and it costs a mere $10 or $20 depending on when you register.
Events are presented around the country, so see if there's one coming up near you or take a trip, it's worth it. This fall TCOYD will be in Worcester, MA, Omaha, NE, Albuquerque, NM and San Diego, CA. Here's the schedule.
For now, sending my best to all my friends at TCOYD, the thousands of patients who have benefitted from a TCOYD event, and those who yet will.