Riva is finally doing what she set out to do in high school – writing her observations of life and human behavior - little did she know then that diabetes would be her muse. Riva has had type 1 since 18 and is the author of “50 Diabetes Myths That Can Ruin Your Life: and the 50 Diabetes Truths That Can Save It” and “The ABCs Of Loving Yourself With Diabetes.” Read full bio

Time for Your Type 1 Diabetes Medal?

Joslin Diabetes Center's 50-year type 1 diabetes medal.

Joslin Diabetes Center’s 50-year medal.
Photo credit ©Joslin Diabetes Center

In my last post, “Type 1 Diabetes Finally Explained,” I talked about the challenges and intense management one endures living with, and managing, Type 1 diabetes.

Thousands of people shared the post and hundreds wrote telling me that I had perfectly described their lives — how hard we work at every day, “staying between the lines.”

Joslin Diabetes Center, one of the world’s renowned diabetes clinics, knows how hard we work. They award people medals for living with Type 1 diabetes 50, 75, and as of last year, 80 years! The 25-year medal became a certificate as so many people are, as once unheard of, living with diabetes beyond 25 years.

Joslin 80 year Type 1 Diabetes Medal The 80-year medal

Dr. Elliott Joslin, founder of the Joslin center, believed that good self-management was key to reducing long-term complications.

Also, that recognizing patients for the care and attention they pay to their diabetes management would serve as motivation. It does.

“This is no less true today than when the first 25-year medal was awarded in 1948,” Stephanie Hastings, coordinator of the medals study, told me. “One of our 80-year recipients said he is now working toward his 100-year medal!”

Giving a medal for living with diabetes is remarkable in so many ways. Too often people with diabetes are scolded by their health professionals for “bad” blood sugar numbers or not working hard enough — as if managing diabetes was a perfect science.

Too often people with diabetes see themselves as failing for not being perfect in their care — which is all but impossible.

Joslin 75 Year type 1 diabetes MedalThe 75-year medal

The prescience of Joslin is very forward-thinking. While we recognize those who’ve lived through cancer as “survivors,” with the intention to honor them for their accomplishment, the word “survivor” actually focuses on the past and reminds one of the hardship.

Yet a Joslin medal is nothing but thunderous applause.

Joslin’s medals program is also more than merely motivation. Over 900 medalists are currently participating in Joslin’s medalist study launched in 2005.

Noticing that medalists were not just surviving, but thriving, Joslin is researching what genetic, environmental and physiological factors contribute to living long and well with Type 1 diabetes, with an aim to improve quality of life and move us closer to a cure.

Research Results To Date

These results were given to me by Ms. Hastings.

    • One big surprise so far is that a lower A1C does not always correlate with fewer complications.
    • Researchers think those with less glycemic control who are not developing complications have a protective factor.
    • Many who live 50 or more years with Type 1 diabetes don’t suffer from diabetes’ major micro-vasular complications — eye (retinopathy), kidney (nephropathy) and nerve-related (neuropathy) complications — or cardiovascular disease.
    • Close to 50 percent of medalists do not have serious complications. About 40 percent do not have retinopathy, even after 50 to 80 years living with the disease. And less than 10 percent have any kidney disease.
    • Over 66 percent of medalists who’ve had Type 1 diabetes for more than 50 years are still producing some insulin.

One might imagine that to live with Type 1 diabetes 50 years or more you must have a certain hardiness. Medalists appear to. They’ve managed their blood sugar levels well for most of their diabetes lives. They are physically active, have high HDL, low LDL and low to average weight.

Psychological Protective Factors
Medalists also have a certain heartiness. They tend to have a positive outlook, be socially connected and have a support system. They don’t feel sorry for themselves, let diabetes define them or beat themselves up for lapses.

Hastings says another prime ingredient for their success is knowing that they are responsible for their care. For the Medalists who got their initial diabetes education at the Joslin Center, they learned from Joslin’s two week educational program that it istheir responsibility, not their physician’s, to take care of their diabetes.

The study also researches protective factors for cognitive function, sexual dysfunction, stem cell and bone health and the impact of physical activity, now viewed as imperative, and nutrition.

What Medalists Say

I spoke with four medalists to hear their thoughts about the medal and living with diabetes.

Sixty-nine-year-old Don Francisco, who got Type 1 diabetes at 15, told me he knew a girl in college who had gotten it at age 9 and died at 25. “She didn’t take care of herself, and I knew I didn’t want that to be me. I’ve had hurdles along the way but I say to myself, ‘I’m going to go around them and go on.’ I heard a wise man say when obstacles are in our way, we go on. ‘Go on’ is what guides me.”

Cliff Bourie, diagnosed on his eighth birthday, told me opening his medal box he felt all those years he’d worked so hard to stay well overwhelm him. “This medal is just so personal and so big.”

John Landin’s major interest in the medalist program was contributing to the research. Having gotten Type 1 at age 3, and having had it now 59 years, he said, reflecting, “The medal doesn’t just belong to me. It belongs to my parents, educators and doctors who gave me the structure, confidence and support to succeed.” He also chided me several times to get my medal.

Deborah Langosch, who got diabetes at 4, also wanted to be part of the research. She described her contribution “as a way of giving back and paying forward.” I felt a small tingle when she described her feeling at the medalist ceremony last year. “To be standing in a roomful of more than two hundred people living with Type 1 diabetes who are healthy and committed to their care and their loved ones was unbelievably moving.”

Receiving a medal for living most of one’s life with diabetes is such a beautifully simple, deeply human way to acknowledge the hard work this illness demands — and those doing it.

As Don told me when he opened his medal box, “Wow, somebody recognized what I’ve been doing all these years. That feeling is amazing.”

So I’m now in the process of applying for my 50-year medal, still 8 years away. You can apply for your medal as early as you’d like but within 10 years, says Hastings, makes the most sense. Your application will be filed for your anniversary.

To apply you can e-mail: medals@joslin.harvard.edu or write to: Medalist Study Coordinator, One Joslin Place, Boston, MA 02215 or call 617-309-4532. To access an application packet click here. For the 25-Year Certificate, apply here.

If you’re nearing a medal anniversary, why not join me? Calling on family and friends to write letters documenting my diabetes-beginning has brought both bittersweet remembrances and deeper acknowledgement for what this is like to live with. And, personally, an appreciation for how hard I’ve worked at living with this all these years.

Now I just have to tell my husband where he’s taking me to celebrate Feb. 22, 2022!

Photo credit for 75 and 80-year medals John Soares ©Joslin Diabetes Center.

 
Originally published in The Huffington Post.

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Type 1 Diabetes Finally Explained

Let me say this with no exaggeration. My whole life, all day, all night, every day and each night is about keeping my blood sugar between the red and yellow lines. Whether I’m wearing, or not wearing, my continuous glucose monitor (CGM), screen pictured below.

 

(The little white dots between the red and yellow lines are my blood sugar levels every five minutes. The 99 mg/dl (5.4 mmol/l) was my blood sugar level the moment I took this photo. The larger white dots are glare from the camera.)

I just explained this “staying between the lines” to my mother, now being able to visibly show her on my monitor what I’ve long tried to tell her: Type 1 diabetes is a tightrope walk — all day and all night taking action to anticipate, prevent and recover from my blood sugar going too high and too low.

My life is, and will forever be, staying between the lines.

I got diabetes in February 1972 when I was 18 years old. I’m now 60. I’ve had diabetes more than four decades, more than two-thirds of my life. I have no memory of what life was like before “staying between the lines.”

Type 1 diabetes is the other diabetes. The one you don’t hear about on TV commercials — that’s Type 2 diabetes. People with Type 2 diabetes produce insulin but not enough or their body doesn’t use it effectively.

While people with Type 2 diabetes also must keep their blood sugar between the lines, it doesn’t require as intense effort. Even for those who take insulin, certain hormones they have that Type 1s lack, help to regulate their after meal blood sugars from rising too high and offset severe low blood sugar.

Type 1 diabetes is an autoimmune condition. Your body destroys your pancreas’ insulin-producing (beta) cells. You no longer produce insulin, or at most a trace amount. 

It’s not yet known what causes Type 1 diabetes. Most likely genetics and/or an insulting event like a virus. The only treatment is to replace the insulin your body no longer makes.

Some people wear an insulin pump that delivers a steady drip of insulin 24/7 into the body and larger amounts when you eat. Others, like me, take one or two daily injections of insulin for metabolic functions, plus injections before almost every meal and snack throughout the day. Food, most significantly carbohydrates, raises your blood sugar, insulin lowers it. Total, I take about six injections a day.

When your blood sugar drops below 70 mg/dl (3.8 mmol/l) as it did here at 6 p.m., you are in hypoglycemia. Your brain and muscles stop getting enough glucose (sugar) to function properly. You may tremble, sweat, have trouble catching your breath and your thoughts, feel ravenous, dizzy or tingly. My heart starts pounding in my chest.

If your blood sugar goes below 55 mg/dl (3 mmol/l), you have moderate hypoglycemia. You may slur and appear drunk, experience confusion, become irritable and spasmatic. If your blood sugar falls below 40 mg/dl (2.2 mmol/l), you are in a state of severe hypoglycemia. You may have convulsions or become unconscious. You may need someone to call 911. If a paramedic doesn’t show up and give you glucose, you can die.

Hypoglycemia is the personal boogeyman of people with Type 1 diabetes. Trying to stay between the lines doesn’t give you much cushion to stay away from hypoglycemia. The American Diabetes Association’s Clinical Diabetes reported that a person with Type 1 diabetes aiming for tight control can experience up to 10 episodesof hypoglycemia a week, and severe disabling hypoglycemia once a year.

Further, slightly under 20 percent of individuals with Type 1 diabetes have what’s called hypoglycemia unawareness. This means they don’t even feel the symptoms of their blood sugar dropping.

On the other hand, if you go above180 mg/dl (9.9 mmol/l) often over the years, you are prone todiabetes complications. They are the result of too much sugar in your blood which then damages your small and large blood vessels.

High blood sugar can damage almost every organ and system in your body: nervous and gastric systems, eyes, heart, kidneys, feet, hands and whatever I’ve left out.

180 is the recommendation of the American Diabetes Association. Yet, the American Association of Clinical Endocrinologists has long advised not going above 140 mg/dl (7.7 mmol/l). Drawing the lines yet closer together.

If you met me, you’d have no idea I spend a huge amount of my time managing this serious chronic illness. I look pretty good, I must say. I am generally happy and optimistic. I am active; I can be spotted walking around town when I’m not sitting behind this computer.

You would have no idea that half my mind space is not free, like yours. It’s busy doing what it needs to do to stay between the lines: guessing at the amount of carbohydrates in my meals, then checking my blood sugar to see how well I guessed. If not well, taking another injection or eating.

Or I’m preparing and drawing up my shot of insulin, also guessing at the dose, and remembering where on my body I took my last three injections so I don’t inject in the same place which can cause scar tissue.

Or I may be switching my syringes, checking my stock of pen needles, putting on a new sensor, ordering more supplies, and feeling my blood sugar plummet when I only meant to lower it a small amount. Then berating myself for over compensating.

There’s also time spent wiping residual blood from blood sugar checks off my kitchen cabinets, coffee table and keyboard.

That’s why the simplest I can put it is Type 1 diabetes is staying between the red and yellow lines all day and night, every day and every night. Oops, too high. Bring it down, now.

Oops, too low — below 50 as it was around 6 p.m. — get it up. Now!

My husband lovingly told me not long after we married that he wanted to know better what it’s like to live with Type 1 diabetes. He decided he would start with checking his blood sugar 10 times a day, as I often do, for three days in a row. He lasted one morning and afternoon. “It’s too painful,” he said, lowering his sad, guilty eyes.

Many people with Type 1 diabetes are annoyed we live in the shadow of Type 2, which gets all the attention. True, we do. 

Many people are irritated we get blamed and sneered at for causing our illness — some people think Type 1 is linked to being overweight and sedentary like Type 2. Not true.

But please, if you’re a sneerer, stop. Thin and normal weight people get Type 2 diabetes too, and there’s controversy whether weight is a cause or outcome of Type 2 diabetes.

The thing about living with Type 1 diabetes is it’s unrelenting.

While I don’t wake up throughout the night to check my blood sugar, many parents of children with Type 1 diabetes do check their child’s blood sugar during the night.

Yet every night before I go to bed, I have to bring my blood sugar to a level that gives me the greatest possibility of indeed waking up in the morning. A number of people don’t, suffering what’s called “dead-in-bed syndrome,” sudden death in people with Type 1 diabetes attributed to hypoglycemia.

I don’t know any other illness where so much work must be done by the patient on a daily basis.

On mornings I don’t finish my cereal, an evening I eat an extra piece of bread, the unexpected rain that foils my walk, traveling, eating at people’s homes, my insulin weakening, inserting my CGM sensor, walking an extra half hour, deciding to take the bus, deciding not to take the bus, the bus doesn’t come so I walk instead, the finger pricks, all day, all night, every day and every night all these things affect my ability to stay between the red and yellow lines.

Last month marked for me 42 years of living with Type 1 diabetes — 42 years of nonstop work to stay between the lines.

The number “42″ seems to have special powers. It’s featured in the classic book The Hitchhiker’s Guide to the Galaxy as the answer to the question of life, the universe and, well, everything.

I certainly don’t know everything. What I do know is even with its demands diabetes has bestowed blessings, and that those with Type 1, and parents of children and teens with Type 1, are working round the clock to delay the potential consequences of having a body that can’t regulate normal blood sugars.

Bottom line, Type 1 diabetes is all day, all night, every day and every night staying between the lines.

Originally published in The Huffington Post.

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Chronic Illness’ Opportunity for Patients and Providers

Typically, we don’t think about illness offering us anything positive. But it can, and it does for countless numbers of people.

After the initial stages of shock and grief, many people develop greater resilience and go on to what I call “flourish.” Live in a way that makes their life even more satisfying, full and compelling than it was before.

It has become my life’s work, helping patients with diabetes flourish: develop better health, along with emotional strength, confidence and happiness, and live more appreciatively and construct lives of greater meaning and purpose.

I also help health care professionals work with patients from an approach that fosters flourishing.

The power of not curing, but healing
When it comes to chronic illness, health care professionals focus almost solely on the medical issues, all but ignoring the person who lives with them.

Medical students receive little, if any, training how to help people with chronic illnesslive – exuberantly, healthfully and happily — with chronic illness.

Perhaps then it’s not surprising that seven out of 10 deaths in the U.S. are caused by chronic illness.

“Healing” is understood to pertain to acute injuries. Few health professionals think “healing” can also pertain to chronic illness. Yet it can; we heal a bit every time we are heard, seen and cared for.

Oddly, even psychologists don’t talk about healing in chronic illness, they talk about “coping.” Yet coping implies negativity, that you are somehow deficient, struggling to come up to “normal.”

There is an opportunity in chronic illness that most providers are missing — to help patients heal. How? By listening more and talking less. Praising more and scolding less. Looking for and acknowledging what we are doing well. Helping us discover our strengths. Inspiring confidence, providing support and holding a vision of our highest possibilities. This is what I teach.

 

Nature gave me this beautiful demonstration of resilience recently.

Over Christmas, I was walking on my friend’s property in the Blue Mountains of Australia. Four months earlier, the mountain had endured the worst fire in 50 years. My friend lost hundreds of trees yet, remarkably, those still standing, while burnt and hollowed, were also sprouting new leaves, new life.

Resilience is within each of us, as it is within nature.

What creates resilience?
In the Harvard Business Reviews’ “How Resilience Works,” author Diane Coutu says resilient people possess three common characteristics: ability to accept reality, a deep belief that life is meaningful and an ability to improvise, to create solutions.

Medical sociologist, Aaron Antonovsky discovered that when patients understand their condition, know how to manage it and find meaningfulness in it, they are far more capable of, and likely to, thrive

Having interviewed more than 150 people living with diabetes, I’ve heard numerous stories of resilience and flourishing. Common among the stories are integrating the tasks of diabetes into one’s life, seeing something positive in one’s condition and using it as a catalyst to eat healthier, lose weight, get active and help others.

Significantly, many people begin to live with more purpose after getting a chronic illness. The very thing that upends our lives in the first place causes us to realize what’s important and become more grounded.

Why is no one talking about post traumatic growth? 
While I’ve discovered many people create more satisfying, bigger and more vibrant lives after diagnosed with diabetes, the language of illness is dominantly “post traumatic stress” and rarely “post traumatic growth.” Why?

I believe a lot of it has to do with the fact that we live in a society focused on negativity. We are drawn to problems and problem-solving. It seems much harder to encourage hope, inspire confidence and envision possibilities.

We are afraid to be happy for fear it will go away.

We are afraid of seeming happier than others for fear they will ostracize us or shame us when our spirits falter.

In the absence of training, tools and knowledge how to help people with chronic illness flourish, health professionals focus on solving tactical problems.

In diabetes, you see it with the abundance of hardware to manage the disease — ever-new and improved meters, pumps, pens, apps, medicines and mobile devices.

You see little “heartware” — empathy, collaboration, interest, attentive listening, support and praise. Yet as providers embrace these, they and patients’ outcomes improve.

While I don’t think anyone with a chronic illness would chose it, many of us have found it has added something to our lives we’re not sure we want to give up. And in many ways, it has made us the best of ourselves.

I see the next leap in treating chronic illness as a shift in mindset and expanding skill sets for both patients and health professionals.

If you have a chronic illness and feel you flourish, I’d love to know how you do that and what it’s brought you?

If you are a health care professional and work from a flourishing approach, I’d love to hear what you do with your patients and what you’ve discovered in doing it?

Originally published in The Huffington Post.

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IDF World Congress in Melbourne: The IDF Takes New Steps to Stop Diabetes

IDF Melborn 2013

(The “Young Leaders in Diabetes.” Photo courtesy of Riva Greenberg.)

Last month I attended the International Diabetes Federation (IDF) World Congress in Melbourne. This was the largest diabetes conference ever held in Australia — with over10,000 clinicians, researchers, industry representatives and patients from 140 countries. And I felt a change in the air.

I sense this small, global, Belgium-based 40-staff member association that represents more than 200 member countries is outfitting itself to put speed and muscle behind halting diabetes’ ravage around the world.

From the formation of its “Young Leaders in Diabetes” (YLD) Programme to the hiring of its new CEO and president — both with decades experience in health care (yet outside of medicine, in technology and politics, respectively) — there seems a stronger focus on strategic leadership and more clear-cut goals to achieve.

First, the time is ripe. As I was told by Leonor Guariguata, IDF coordinator for the recently released Diabetes Atlas, diabetes is beginning to act like a contagious disease. As poorer nations’ populations of working age are falling under the diabetes-bus, so to speak, rising costs of care, decreasing productivity and the pricing and availability of food, medicine and health care for diabetes will affect all of us.

My introduction to the conference was participating in the Young Leaders in Diabetes Leadership Training. As YLD Leadership Training Faculty, under the sponsorship of Novo Nordisk, I and several noted diabetes experts helped these young people with diabetes be more effective advocates.

The Young Leaders in Diabetes Programme was formed by IDF two years ago as a voice for young people with diabetes and to strengthen their local diabetes associations. The group has already almost doubled in size from 68 to 132 and includes representation from 74 countries’ young leaders.

Alex Silverstein, outgoing president of the YLD, says much of the success of the group was learning from each other’s experience and being supported to work on a project relevant to their skills and country’s needs. Silverstein himself fundraised 100,000 pounds for three projects he manned for Diabetes UK.

Silverstein believes passionate and committed young people with diabetes can have great impact at the local level with their member associations, with health care professionals and the public worldwide.

The YLD’s new president, Keegan Hall from South Africa, told me in the past two years 50 Young Leaders have executed at least one project in their country. Keegan aims to create a stronger support structure and advocacy tools for the Young Leaders.

Lest you think these projects are insignificant, you’d be wrong. One Young Leader from Zimbabwe organized a group of volunteers for a diabetes awareness campaign. They distributed informational material about diabetes in the five largest shopping malls in Zimbabwe. More than a thousand people were reached, many said the information was entirely new to them and many got their blood sugar tested for the first time.

From young leaders to new leaders, IDF’s recently appointed CEO, Petra Wilson, begins her stewardship intent to expand e-health options as part of IDF’s objective to empower people with diabetes. “E-technologies will give patients critical information to make informed decisions, advance diabetes education and extend health care providers’ reach.” Wilson formerly led connected health teams at Cisco and the European Commission in Health.

Wilson also sees the potential for “big data,” huge volumes of data from thousands of sources, to be linked to lifestyle data to create health care policies that benefit those living with diabetes.

Sir Michael Hirst stepped into IDF as president 18 months ago and is drawing on his political career. He’s established the first Parliamentary Champions for Diabetes Forum.

One task of the Parliamentary Champions will be to working together to represent the interest of people with diabetes in policy making. Another will be to review and assess the commitments made by Heads of States and governments after the UN High Level summiton non-communicable diseases. Said Sir Michael, “This review provides an opportunity for stock-taking on progress, including sharing successes, lessons learned, opportunities, and recommendations to shape the future of diabetes and guide us forward.”

Sir Michael is also the father of a daughter with Type 1 diabetes and had no problem recently urging Secretary General Margaret Chan of the WHO that the resources dedicated to diabetes aren’t nearly enough.

I wait to see what this dynamic organization will accomplish going forward. Meanwhile I think of that refrain from the classic children’s book, The Little Engine That Could.

As the tiny locomotive chugged up the mountain saying, “I think I can, I think I can, I think I can,” personally, I think the IDF just might.

Originally published in The Huffington Post.

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The Antidote to Living With Diabetes

As Diabetes Month ends, I don’t know how much we’ve accomplished. I don’t know how many more people with diabetes will take better care of themselves. Or how many people realized they may have undiagnosed diabetes and went to get a fasting blood sugar test.

I do know that Nov. 14, World Diabetes Day, the International Diabetes Federation released the latest stats and projections on the rising incidence of diabetes around the world. The situation everywhere is getting worse.

Yet 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.

Looking for a way to cast light where things are dark, I believe pride can serve as an “antidote,” particularly for Type 1 diabetes, until there is a cure. I have found so in the passing decades. Perhaps there will be some light for you in my story.

Riva Greenberg

After three decades living with Type 1 diabetes, at the age of 48, I was laid off from my job, undergoing diabetic frozen shoulder surgery and getting married — for the first time.

There was another first. Not wanting to be a burden to my husband-to-be, I went to a diabetes educator for the first time in 32 years.

All these events provided the perfect midlife crisis — and the beginning of my second career — diabetes author, lecturer and coach.

I see diabetes management differently than most. I believe pride in how we live with diabetes can move people to manage their diabetes better than discipline, willpower and fear.

I am convinced that we need to inspire patients to better diabetes management, not through emphasizing target numbers, but the rewards of accomplishing those targets: good health, energy, spending time with loved ones and living our dreams.

Focusing on what gives life juice and what one loves is what motivates people to create health. Not surprisingly, those who use diabetes as a catalyst to create more meaningful and purposeful lives, live fuller, happier and healthier ones.

But pride cannot be taught, it can only be kindled. So we must shift our overwhelming focus on achieving numbers to bolstering pride. Pride creates its own closed loop system. Managing diabetes well you gain strength, courage, confidence, capability, and pride. Feeling proud, you are motivated to continue to manage your diabetes well.

Successful diabetes management requires both medical proficiency and emotional strength, and so we must look at people with diabetes as whole human beings. Sometimes I fear health professionals see us as levers to be pulled at appointments, and then sent home to get perfect numbers. 

I moved from a miserable beginning with diabetes: It was 1972 and I was 18 years old when diagnosed with Type 1. I spent a dozen years with no meter, the medical ignorance of the times and a physician who in trying to “scare me straight” scared me into denial. But through the years I learned more and shifted my goal from getting through the day to “flourishing” through the years.

Corny as it is, for me diabetes is in many ways a blessing in disguise. I believe I am healthier than I would be otherwise. I have used diabetes to lose 30 pounds and keep them off for 30 years. To walk three miles a day. To have a heart that makes cardiologists smile. To have tight blood sugar control, and to manage my tasks with gumption and grace, even with diabetes’ inconsistencies.

I also have a deeper appreciation for all that I have and a life now built around purpose and passion. I have lived and traveled around the world, in part due to diabetes, and accomplished things I never thought I could. Yes, I am proud.

Pride is an unquantifiable emotion; we cannot measure its power except in witnessing its results. I believe pride can transform the hopelessness, helplessness and notion of surviving diabetes into the strength, courage, character and determination of thriving with diabetes.

As Diabetes Month ends few people will stop to think that for those of us with diabetes, our diabetes life continues.

Be proud of what you do managing diabetes and let that pride help you ride the waves that will come and go each passing day.

Then, we will surely have accomplished something tremendous this Diabetes Month.

Originally published in The Huffington Post.

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IDF Releases New Dire Diabetes Stats and Projections

The International Diabetes Federation (IDF) — the umbrella organization for 200 diabetes associations in more than 160 countries — just released its 2013 Diabetes Atlas. It cites current statistics and the rise of diabetes worldwide.

If you’ve been following the trend in diabetes, it will not surprise you to know diabetes continues to rise, unabated, around the world.

Type 2 diabetes, which many consider an epidemic currently, is increasing worldwide predominantly due to poor diet, sedentary lifestyle and the fact that we are living longer.

2013-11-14-peopleinworldwd.png

Leonor Guariguata, IDF biostatistician and coordinator for the Diabetes Atlas, told me via email something shocking. That despite being a non-communicable disease, where there are changes in risk factors and environments, diabetes will spread from one community to the other, essentially acting like a communicable disease.

Already, diabetes extracts a high cost in health care dollars, economies’ financial stability, lost productivity, and it destroys lives and families.

Below are highlights from the 2013 Diabetes Atlas.

Startling facts and dire projections

Sir Michael Hirst, IDF President, told me via email that research shows one in 10 of the world’s population will have diabetes by 2035.

New wealth and development in the Middle East has already led to one in 10 (p. 14) adults having the disease.

The greatest number of people with diabetes worldwide are between the ages of 40 and 59.

Every six seconds (p. 14) someone dies from diabetes.

Diabetes imposes unacceptably high human, social and economic costs on countries at all income levels (p. 11).

In Africa, three quarters (p. 14) of diabetes deaths are in people under 60 years old, handicapping Africa’s ability for development.

In 2013, the world spent $548 billion (US) (p. 14) on diabetes health care — 11 percent of the total spent for health care worldwide.

175 million (p. 11) people are currently undiagnosed and progressing toward complications unaware.

The number of people with diabetes globally will increase by 55 percent (p. 13) by 2035.

2013-11-14-55increase.png

Sir Michael emphasized a primary reason the growth of diabetes is so difficult to halt. “Diabetes,” he told me, “is not merely a health issue, but also a political issue, one which requires a whole society approach.”

How is it, I keep wondering, we are not paying attention? How is it we are so shortsighted that in the U.S. we put shareholder value over the value of individuals’ lives? Over the need for families to be financially stable?

Why are we willing to further erode our nation’s economic progress with a stunning “ignore now, pay overwhelmingly later” game? In every respect — human, financial, societal — the burden of diabetes is, and is becoming, crippling.

Given the epidemic is advancing most quickly in China, India and the Middle East, I asked Guariguata, “Why should someone in North America care about the skyrocketing growth of diabetes elsewhere?”

Her answer: “The rise of diabetes has repercussions for everyone, everywhere. Rising costs for care, decreasing productivity and pricing and availability of food, medicine and healthcare affect us all in our global society.”

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What needs to happen?

The refrain in public health is that, “People will make the healthy choice when the healthy choice is the easy choice.” Guariguata agrees. “The only option,” she said, “is a concerted global response with coordination and commitment from governments to change our environment so that healthy choices are easy, and that care, support and so that education are available to all patients, providers and the public.”

As in all tragedies, big numbers make the reality smaller. But it’s each small, individual story that brings the reality home. Like the child and his brother in Africa who walk four hours in no shoes once a week to get insulin from the one clinic. Or the young wife in India who has sold all the family possessions to buy her husband medicine and nurse him. Or my neighbor’s Type 2 diabetes that has caused her health to fail dramatically so for days she doesn’t leave the apartment.

So what can you do? Put pressure on your policy makers to vote for health, and create a healthier lifestyle for yourself and your family.

If diabetes is in your family, make sure everyone gets a fasting blood sugar test and see whether you have diabetes or Stage 1, pre-diabetes.

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For me, I’ll continue to use the blue circle, the universal symbol for diabetes created by the IDF in 2006, under my posts, and write and speak to help those who share this condition, and the health professionals who care for us.

Originally published in The Huffington Post.

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Health Ills That Can Come With Years of Diabetes

November is Diabetes Month. This month you’ll hear more about diabetes symptoms and risk factors than you will all year.

But there’s something you won’t hear about. The health challenges those of us who’ve lived with diabetes for decades may face. There’s little research on it; not so long ago people died before they could live that long with diabetes.

But for those of us who will have lived much of our lives with diabetes — those who got, and will yet get, Type 1 diabetes as a child, teen or young adult, and younger adults and children now getting Type 2 diabetes — there are many health ills (comorbidities) that can come with long-duration diabetes. These comorbidities are in addition to the complications we often hear associated with diabetes: heart disease, kidney disease, amputation, blindness, neuropathy and retinopathy.

Comorbidities with long-term diabetes

 
Certified Diabetes Educator Claire Blum says the following comorbidities — muscle and joint pain, carpal tunnel, trigger fingers, high blood pressure, a deformity of your foot called Charcot’s foot, nerve and thyroid problems, hearing loss, frozen shoulder, loss of flexibility and increase of rigidity and celiac disease — occur with greater frequency in people who’ve had diabetes 25 to 35+ years.

What happens is, living with diabetes, your body experiences greater and more frequent inflammation. This is largely due to impaired immunity, impaired metabolism of carbohydrates and fats, hormonal imbalances and the metabolic stress associated with these disorders. These are in part caused by elevated blood sugar levels and the rate and speed at which blood sugar rises and falls.

As a result, the comorbidities above are more typically seen in people with diabetes, and at an earlier age.

Blum says traditional diabetes therapies, like checking your blood sugar, taking your medicine and counting carbohydrate and fat grams, should be considered only part of a treatment plan for staying healthy. “We need to see our body,” says Blum, “as a whole system and do what supports it as a system.”

What to do now to stay healthier over time

    • Manage your blood sugar – Keep your blood sugar in the best control you can to reduce the stress to, and inflammation within, your body.
    • Eat nutritiously – Our bodies pay metabolically with inflammation for nutrient-deficient food. Foods rich with anti-oxidants — colorful fruits and vegetables like berries, raisins, apples and apricots, broccoli, Brussels sprouts, carrots, sweet potatoes, peppers and artichokes, beans like kidney, navy, garbanzo and pinto, help curb inflammation and increase flexibility.
    • Practice stress reduction – be aware of, and minimize, stress through mindful practices such as meditation or breathing exercises. Stress can cause adrenalin rush and increased inflammation.
    • Stay flexible and build muscle mass – Do activities where you’re moving and building bone and muscle strength like brisk walking, swimming, yoga, pilates, using resistance bands or lifting weights. It can help you prevent getting frozen shoulder, rigidity and joint inflammation.

Blum, who has type 1 diabetes herself, said if she’d known that being more flexible might have helped her avoid the frozen shoulder she developed a few years ago, she would have started the yoga she does today earlier. “Taking care of yourself now,” says Blum, “is going to help you delay comorbidities and diabetes complications if you get them at all.”

When I was diagnosed at 18, I was told my lifespan would be 15 years shorter than if I hadn’t gotten diabetes. Yet today many say that people with Type 1 diabetes may outlive others because we have to take care of ourselves.

The message is take care of your whole self — body, mind and spirit — and start now. It pays off.

As Claire and I both will tell you, she having lived with Type 1 diabetes 35 years, and me, 41 years, taking good care of ourselves we are, in many ways, healthier than we’ve ever been.

Originally published in The Huffington Post.

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12 Healthy Ways to Lose Weight for Good

You’re 10, 20, 30 or more pounds overweight and you’ve dieted, on and off, for years. You’ve lost weight and then put it back on and more.

Why? Diets don’t work. Today we know diets don’t work. Even Weight Watchers says so. Restricting calories again and again alters your metabolism. That’s why so many people put back the weight they lost while dieting, plus more.

Yet, desperate to lose weight, Americans keep going on diets. While there’s no magic bullet for weight loss, there are steps you can take to lose weight, safely and for good, while increasing your health.

The common sense advice to “eat less, move more,” isn’t entirely correct. It matters what you eat.

And here’s a dirty little secret: Consuming refined carbohydrates — simple sugars and starches — is one of the biggest reasons Americans are now battling obesity. Carbohydrates you don’t burn get stored in your body as fat.

Cereal

Since food manufacturers began lining supermarket shelves with “no-fat” and “low-fat” foods — most of which have added sugars — we have become fatter than ever.

This list of healthy eating habits is by no means complete. But here are 12 of the many recommendations in my new book to help you lose weight and gain the benefits — more energy and a fitter, healthier you. 

1. Eat a healthy breakfast every morning. Eating breakfast revs up your metabolism. If you skip breakfast you’re likely to eat more calories by binging later in the day. In a study of people who lost weight and kept it off for more than five years, one major thing they all did was eat breakfast. But Pop-tarts, donuts and Hot Pockets don’t cut it. Cooked oatmeal, whole grain cereals, whole grain breads, eggs and tofu with a salad are all healthy choices.

2. Stop counting calories and eat foods that nourish your body. A meal of fat-free, sugar-free, refined processed foods is also nutrient-free. Plus, it won’t satisfy you for long compared to a meal of nutrient-dense whole foods like vegetables, lean meats, whole grains, and healthy fat. As you begin eating more nutritious foods and get a little more physical activity (if you aren’t physically active now), your body will come to its natural healthy weight.

3. Always have some veggies and fruit washed and cut in your fridge. This way they’re easy to grab when you’re hungry (instead of reaching for that giant-size bag of potato chips) and you can throw them in your bag when you’re on the go.

Fruit

4. Replace diet soda with unsweetened beverages. Diet drinks keep your sweet tooth craving sweets. Plus, they make you feel virtuous. Many people who drink diet drinks actually reward themselves with extra calories through the day. Instead, drink iced teas or plain or carbonated water with a slice of lemon or lime.

5. Use the “Plate Method” to make a healthy meal. Fill half your plate with low or non-starchy veggies like broccoli, asparagus, cauliflower, Brussels sprouts, string beans, mushrooms, peppers, or leafy greens and some fruit. Fill one quarter, with a whole grain like brown rice, barley, bulgur, or quinoa, or a starchy vegetable like corn or potatoes, or beans. Fill the last quarter with protein like broiled, sauteed, roasted, or baked (not fried) fish, chicken or turkey without the skin, lean cuts of meat, tofu or eggs.

6. Cut down on carbs. Refined carbohydrates (cake, candy, cookies, muffins, scones, cupcakes, soda, fruit juice, syrups, chips, and most supermarket breads) you don’t burn turn into fat. Even foods like fruit yogurt and many breakfast cereals have lots of added sugar. Replace fruity yogurts with Greek plain yogurt, choose high-fiber, lower carb cereal and add small amounts of healthy fat to your meals with avocado slices, unsalted nuts, seeds and olive oil.

7. Shrink your lunch and dinner plates. If you and your family eat off a plate larger than ten inches, replace them with plates that are nine or ten inches in diameter. We tend to eat what’s in front of us. Using smaller plates there’s less food in front of you to eat.

8. Enjoy less healthy foods now and then, in small portions, unless there’s a medical reason not to do so. Not letting yourself eat something you love may make you feel deprived and frustrated and subvert your efforts to eat well.

9. When eating out ask your server to double the green veggies in place of the potato or rice. I always do this and benefit from more nutrition and less carbs. Also, share food at the table. My husband and I always share an appetizer and when with a group, if someone orders dessert, it comes with a spoon for everyone.

10. Keep tempting foods out of the house. Stock your fridge and pantry with healthy foods and you’re creating an environment that will help make you successful. Enjoy treats occasionally when you’re out.

11. Enlist family members and friends to eat healthier with you. It’s easier
when it’s a team effort, and, your family will also reap the health benefits along with you.

12. Talk positively to yourself and quiet your inner critic. Notice during the day your positive efforts and compliment yourself. “I chose a healthy vegetable plate instead of a slice of pizza. Great job!” The more you pat yourself on the back for what you’re doing well, the more energy you’ll have to keep doing it. If you notice you’re telling yourself you’ll never succeed, or beating yourself up for having two bowls of ice cream, stop! To quiet your inner critic head out for a brief walk, turn on some music and sway, and above all, tell yourself tomorrow is a new day and a new start.

My new book, Diabetes Dos & How-Tos, contains 65 “Dos” for people to manage their diabetes. But the 20 “Food Dos” in the book will benefit anyone.

If you don’t have diabetes they will show you how to lose or maintain your weight and eat more nutritiously. If you are at risk for diabetes, or have pre-diabetes, (Stage 1 Type 2 diabetes), the book’s “Food Do’s” can help you prevent full-blown (Stage 2) Type 2 diabetes.

Originally published in The Huffington Post.

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What Happens When Doctors Go Too Slow

I just returned from the American Association of Diabetes Educator’s national conference. About 2,500 educators attended out of approximately 17,000 in the country. (The 17,000 educators for now more than 26 million people with diabetes is another story!)

I attended as a presenter (“Dancing Together: The Power of a Relationship-Centered Approach”), to hear the latest news and to connect with my fellow educators — perhaps the most impassioned group of health care providers I know.

But that’s not what I want to talk about. I want to share the opposite — the phenomena that too many health care providers fall victim to – clinical inertia.

Clinical inertia is when a health care provider gets sluggish with your care. When he or she doesn’t initiate or change your treatment when clinically indicated.

The Danger of Clinical Inertia
Clinical inertia is a major contributor to inadequate treatment in chronic illnesses like diabetes, heart disease and depression. It may even account for up to 80 percent of cardiovascular events.

Like medical errors, clinical inertia can put a patient in danger. For instance, your depression goes untreated or your blood sugars are always high because you’re not on the right medicine.

Yet unlike medical errors, clinical inertia goes mostly unreported and under the radar. That’s why it’s up to you to be mindful whether your provider is providing treatment and recommendations in your best interest.

I hear about clinical inertia often in diabetes. Not from physicians, but from patients. While they don’t use the term, they describe its effect. 

A patient will tell me their blood sugar has been consistently in the 300s mg/dl (above 16.6 mmol/l). When I ask, “For how long?” they say for years. After I recover, they go on to tell me their doctor doesn’t seem concerned. 

When I first heard this from patients I was surprised. I hear it so often now, I’m not. What does surprise me, however, is many patients’ inertia to discuss their continued poor health with their doctor.

Is it the white coat syndrome? The authority we bestow on doctors? It could be because when I suggest switching providers, whomever I say this to typically hesitates. Then a moment later I see the lightbulb go on. Of course I should do that!

I’m not damning doctors. I have some amazing doctors. Nor can I know when a patient tells me they’re struggling, whether they’re on a poor treatment plan, or it’s brilliant and they’re not following it.

But I do know clinical inertia is real and it occurs frequently among general practitioners in diabetes. And it’s understandable why.

Treating diabetes is complex and time-consuming. Many patients need to be taught how to manage their blood sugar, blood pressure, cholesterol and weight. How to organize taking a plethora of medicines by time and amount and keep their prescriptions constantly filled.

Most patients will need to change lifelong behaviors around eating and exercise — actions that have been ingrained for decades. They may also need to learn how to use blood sugar monitoring and tracking devices, or learn how to adjust their insulin doses daily on a sliding scale. And much more.

Causes of Clinical Inertia
There are three main reasons cited for clinical inertia: 1) Providers believe they’re already giving sufficient care, 2) Providers lack sufficient training and 3) In chronic illnesses that require patients to change behavior, many providers don’t believe patients are capable of, or willing, to do so.

The fear of losing patients and the income they provide can also be a cause of clinical inertia. A pharmaceutical rep, who works with doctors in New York City’s Chinatown, told me a doctor he knows who has Type 2 diabetes finally put himself on insulin and said it was the best thing he’d ever done.

When the rep asked if he now recommends insulin for more patients, he said, “Absolutely not. They’ll only leave me and go around the corner to a doctor who’ll happily give them pills.”

I hope this is uncommon. I also hope if you are a medical professional and fear patients will leave you because you recommend an injectible as their best treatment, that you help them understand why this is in their best interest and explore with them what they’re willing to consider and do to address their own fear of taking shots.

Speak Up For Yourself
If you have a chronic condition and a voice in your head is saying, “I should be doing better, something’s not right,” you owe it to yourself to say that to your doctor. If you don’t get the answer you want, find a doctor who agrees with you.

Dr. David Agus, professor of medicine at the University of Southern California, Keck School of Medicine, says in his book The End of Illness that the knowledge you carry about yourself is as essential to your wellness as your doctor’s knowledge. Agus also recommends if you feel you can’t talk to your doctor, find another doctor.

We’re all prone to inertia from time to time. But when it comes to living with a chronic illness, if you’re doing nothing when things are going poorly, you are actually doing something — getting worse. Trust me, I know. My friend’s cousin did just that and he’s no longer here to tell you about it.

Originally published in The Huffington Post.

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The Diabetes Test Strips Crisis: How Cutting Costs Is Robbing Your Health

Medicare and the FDA (Food and Drug Administration) are choosing to lower costs at the expense of your health. They are allowing cheap and faulty diabetes test strips into the marketplace. Test strips that have been proven — the FDA admits – to give inaccurate glucose readings.

This is dangerous for anyone who has diabetes, no matter what your age. We cannot allow this to continue and, together, we can stop it — and we must.

I want you to write a letter to the FDA to keep bad strips out of the market. That’s it, that’s all, that simple. Go, as soon as you read this, and use one of the sample letters that has already been created for you at StripSafely.com.


Strip Safely

StripSafely was created by the diabetes online community with a single mission. To have the FDA create a plan to best ensure test strips’ accuracy. A plan that holds test strip manufacturers accountable to meet minimum accuracy standards — and reviews test strips’ accuracy after they enter the marketplace, when new lots are often found to be unreliable.

Gary Scheiner, certified diabetes educator and author, says, “The 4 million plus people in the U.S. who take insulin typically base doses on meter readings. Inaccurate readings can lead to inappropriate dosing. This greatly increases the likelihood of severe hypoglycemia (low blood sugar) and long-term hyperglycemia (high blood sugar).”

Meaning, each blood sugar reading I get throughout the day tells me my starting point for every decision I make about eating, activity and how much insulin to take. Each of my daily diabetes decisions is based on that reading. If my reading is falsely high or low I will take an action that can cause me to fall into a coma or die or suffer diabetes complications.

Another problem, says Scheiner, is if patients lose faith in their meter and strips due to inaccuracies, they are likely to stop testing altogether.

Why is this a problem now?

Because this month Medicare rolled out its price-slashing program on blood sugar test strips. After requesting competitive bids, Medicare now limits the test strips a beneficiary can receive to 18 selected manufacturers, mostly from overseas.

Several of these manufacturers’ strips failed accuracy tests or their accuracy was deemed uncertain. In one study of 34 blood glucose systems, more than one-fifth did not meet the minimal accuracy requirements of the ISO standard.

The FDA acknowledges there are strips in Medicare’s new program that give inaccurate results and they have no way of removing them. Further problematic is the FDA reviews manufacturers’ test strips before the strips are marketed, but not after. Strips can, and do, vary after they’re in the marketplace.

And while this is currently being imposed on Medicare members, this may hurt us all. David Edelman reports in “Can You Trust Your Test Strip’s Accuracy?” that the winners of our government’s bidding war may price U.S. manufacturers out of the market as they are held to the FDA accuracy standard.

Or U.S. manufacturers may have to drop their prices so low, they will abandon the other essential things their test strips fund — new product development, innovation, customer service support, educational programs, and oh yes, accuracy.

Mike Hoskins, at DiabetesMine.com says all “PWDs (people with diabetes) will have less choice (of meters and strips) and an even harder time getting coverage for the best brands.”

Medicare’s cost-cutting strategy is clearly save now, pay later. You, or someone you love, may pay with heart disease, kidney disease, an amputation, neuropathy or retinopathy, all diabetes complications. Or the payment may be the co-morbidities of diabetes: cancer, obesity, hypertension, fatty liver disease, sleep apnea and fractures. You may pay in health care costs for surgeries, drugs, medications and not being able to work. Inaccurate blood sugar readings will contribute to all of these. 

Write a Letter, It’s Easy-Peasy

Take just a few minutes, use one of the sample letters on the site and add your voice to urge the FDA to protect you or someone you love by ensuring test strips meet regulatory requirements — both before and after they’re in the marketplace.

My letter is on the site as well and here’s the beginning:

Jeffrey Shuren, MD JD Director, Center for Devices and Radiological Health Food and Drug Administration 10903 New Hampshire Avenue, WO66-5442 Silver Spring, MD 20993

July 2, 2013

Dear Dr. Shuren:

I’ve had type 1 diabetes for 41 years and I’m turning 60 next month. Two weeks ago my A1C was 5.5 percent, yes, normal. How is that possible? I adhere to a healthy diet, exercise every day, and check my blood sugar diligently using a meter and strips recognized among those with the tightest accuracy.

I am writing to you because while I might have said as a teenager, “I’d die if I don’t get that!” I actually could die if I don’t have accurate test strips…

 

Hold the FDA to their job

Many would argue the most basic job of government is to protect its citizens. Yet, the federal government is causing seniors to lose out and set the ball in motion for U.S. strip manufacturers to get priced out of the market. If this happened it would deny nearly a third of American citizens, the population with diabetes and pre-diabetes, accurate glucose meters and test strips — the most essential tool to manage our diabetes and our health.

FDA accuracy standards are already low, and I have been among the many fighting to increase accuracy of meters and strips. But now all of us may face strips that don’t even meet those standards.

Can massive organizations like Medicare rob us of our health? Not if we don’t let them.

Write your letter please. Help urge the FDA to pursue a plan to keep us healthy. This is too important. And pass this on to anyone you know with diabetes.

They’ll thank you for it — as does my aunt, my downstairs neighbor, hundreds of my friends and acquaintances, and my husband — who doesn’t have diabetes, but if we don’t fix this, one day soon may not have me.

Originally published in The Huffington Post.

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