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

Man Marries Diabetes in Downtown New York City

Man Marries Diabetes in Downtown New York City

Photo credit Michael Dote.

 

The invitation read “Marry the Beast,” and more than 100 people were in attendance. The marriage was actually a commitment ceremony. Paul Binder renewed the vows he had made to his Type 2 diabetes when diagnosed 18 years ago.

Paul Binder is founder of New York’s Big Apple Circus. Yet don’t let that make you think this ceremony was an act. Binder says, “Making my vows again to my diabetes I had a real and deep sense of commitment and renewal. Saying them out loud in front of a group of people, some of whom are my oldest friends, made me feel tremendously supported.”

Paul’s vows:

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The ceremony was part of an event staged by The Betes, an organization expanding narrative medicine to include healing through theatre and play.

Marina Tsaplina, The Betes’ founder, is the 20th in my series on diabetes change agents. At 28 she is helping us see and transform our chronic illness “stories” to heal.

Marina Tsaplina (on right) founder of The Betes. Photo courtesy of Tsaplina.

Marina Tsaplina (on right) founder of The Betes. Photo courtesy of Tsaplina.

Tsaplina is a performing artist, puppeteer and executive and artistic director of The Betes. She told me the idea of a wedding first came to her last July.

“We were in the middle of developing The Betes programs,” Tsaplina explained. “Our focus on emotional health in the face of chronic illness made me confront my own pain and lifelong journey with diabetes. Wanting to embrace my struggle I thought what if I marry my diabetes?”

“My dear friend Barbara Ann Michaels is a wedding officiant so she performed the ceremony. To my complete surprise during the ceremony I found myself saying, ‘I love you,’ to the character I’d developed for my diabetes. Immediately, I understood the value of this ceremony. Also, that it perfectly fit The Betes’ work, helping people visualize, verbalize and externalize their chronic illness stories.”

The Betes has a big mission: To remind us that health care is a human story and that empathy and seeing the whole patient, not just their disease, needs to be at the heart of the patient-provider interaction.

Most importantly Tsaplina says is, “To help people transform their relationship with their illness. As we un-demonize our illness and treat it more tenderly, we see the many layers of meaning it holds for us. Then we are able to embrace our illness and become more whole.”

Tsaplina long thought of her own Type 1 diabetes, which she got at the age of 2, as her “beast.” “But then I realized that all that I was going through, my struggle with depression and low self-esteem, not just my diabetes, were my beast,” Marina said.

“No one has to see their illness as a beast, but there is probably something that is attached to it that needs to be heard and healed. That said, our work doesn’t ‘cure’ or ‘treat’ the physical disease. It helps make the burden lighter and the person feel more free.”

The Betes’ artistic director and producer is Deborah Kaufmann. Kaufmann is a founding member of Big Apple Circus Clown Care, the world’s first professional hospital clowning program and the recipient of the Raoul Wollenberg Humanitarian Award for her work with Clown Care. Kaufmann has entertained thousands of ill children in hospitals and trained all of the “Clown Doctors” who participate in the program.

Play, humor, joy, being open and bringing our stories out into the light, these are things we seldom talk about in chronic illness and never see. Yet, as in narrative medicine’s therapeutic story-telling, these are centuries old means through which to connect to, and transform, our stories of hardship to heal.

That night as we watched Paul on stage with his officiate, sipping our wine, gladdened to be among friends who share diabetes and many esteemed health professionals, we witnessed a new ritual — a public commitment to one’s own health care.

Rituals allow us to soften grief, heighten confidence and mark an event as significant and meaningful. As did Paul’s face reading his vows and taking his old partner, diabetes, into his heart anew to tend to and to love as long as they both shall live.

Should you like to arrange your own commitment ceremony, “Marry the Beast” or a service for healthcare teams to reaffirm commitment to their practice, “Marry the Care” contact The Betes.

Originally published in The Huffington Post.

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Major Hypoglycemia News From Paris Diabetes Conference

T1D Exchange Severe hypoglycemia (very low blood sugar) is the dreaded fear of most people with diabetes. It can kill you.

A few weeks ago at the Advanced Technologies & Treatments for Diabetes (ATTD) conference in Paris, the T1D Exchange announced two findings that may:

  1. Prompt legislation to help older people with Type 1 diabetes prevent severe hypoglycemia
  2. Herald a new, simpler approach to glucagon “rescue” treatment for severe hypoglycemia — a needle-free, nasally-delivered glucagon

For the first time since glucagon became available more than 50 years ago, we may have an easy means to “save” a person with diabetes experiencing severe low blood sugar — the consequences of which include seizures, coma and death.

Over age 60, most at risk population for severe hypoglycemia
This data was first noticed through the T1D Exchange’s Registry of over 26,000 people with Type 1 diabetes: Twenty one percent (section 68) of people in the Registry over the age of 65 experienced a seizure or loss of consciousness due to hypoglycemia over the past year.

Surprisingly, a commonly cited risk factor for hypoglycemia, trying to maintain tight blood sugar control, was not the cause. A follow-up analysis comparing the 21 percent to study participants who had not had a severe low in the previous year, showed that they spent more time each day in the hypoglycemic range and their blood sugar levels fluctuated more, which can lead to being less aware of low blood sugar. This, despite the fact that they checked their blood sugar frequently (six times per day).

Irl Hirsch, M.D., professor of medicine and diabetes treatment and teaching chair at the University of Washington School of Medicine, said the problem is aggravated by Medicare patients often not being able to get much needed test strips and continuous glucose monitoring devices. The hope is that these findings will urge Medicare to make life-saving equipment more available to seniors.

Trial Results For Needle-Free Glucagon 
Lead investigator, Michael Rickels, M.D., associate professor of medicine at the University of Pennsylvania Perelman School of Medicine, shared data that the newly trialed glucagon shows comparable efficacy to current injected glucagon.

Rickels also cited the trialed glucagon’s delivery system — a puff in the nose similar to a nasal spray — as potentially life-changing. No longer will loved ones and caregivers need to fumble mixing glucagon ingredients or have the wits and capability to inject someone while they’re downright panicked.

Remarkably, this new glucagon is being developed not by a giant pharmaceutical company but by a small group of passionate individuals, many of whom are personally touched by Type 1 diabetes. Their company, Locemia Solutions, was created specifically to advance the awareness, education, prevention and treatment of hypoglycemia.

Co-creator and chairman, Robert Oringer, has two sons with Type 1 diabetes. Oringer told me, “I need a world where everyone can help anyone deal with severe low blood sugar really easily.”

Dr. Claude Piché, the company’s co-creator and CEO, shared with me that information supporting the idea of a needle-free nasal glucagon has existed since 1983. Yet no company took on the risk of developing it, until now.

Piché credits collaboration with the T1D Exchange along with its sharing model, and the support of the Leona M. and Harry B. Helmsley Charitable Trust, as integral to helping develop a simpler approach to hypoglycemia rescue. The company is conducting additional clinical trials and working closely with regulatory agencies to bring the product to market as soon as possible.

For me, living with Type 1 diabetes and being 61 years old, these findings are exciting. They hold the promise of greater safety and ease — for the millions of people with diabetes who use insulin and those who love them — to simply get through the day and live our lives.

Note: The T1D Exchange is a non-profit organization with a Registry of over 26,000people with Type 1 diabetes and a diverse and active social media community myglu.org. The T1D Exchange partners with more than 75 clinics across the country. Its unique collaborative model shares diabetes research, treatments, education and patient information and insights across diabetes stakeholders — patients, clinicians, scientists and industry — to accelerate better and faster therapies for Type 1 diabetes.

Originally published in The Huffington Post.

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Diabetes’ Unspoken Threat, Hypoglycemia

Diabetes' Unspoken Threat, Hypoglycemia

My continuous glucose monitor (CGM) / Photo courtesy of Riva Greenberg

The morning I began this post about the recent American Association of Diabetes Educators’ (AADE) survey that reveals many people with diabetes do not know what hypoglycemia (low blood sugar) is — I nearly gave it to myself.

Hypoglycemia is defined as blood sugar below 70 mg/d. (3.9 mmol/l). For people with diabetes who take insulin or another glucose (blood sugar) lowering medication – whether you have Type 1, Type 2, Gestational diabetes or LADA — there is a ’round-the-clock threat of your blood sugar dropping below 70.

For the first time in my nearly 43 years of living with diabetes I mixed up my two insulins. I take a long-acting insulin via an insulin pen and a mealtime insulin with vial and syringe. Two days ago I got an insulin pen for my mealtime insulin to see if I preferred it.

Without thinking, I injected eight units (my long-acting dose) of my mealtime insulin instead of 2 units (my breakfast dose). I immediately drank a quarter cup of maple syrup to counteract the expected drop in blood sugar (the rise you see to over 300 mg/dl (16.6 mmol/l) is the quick action of the maple syrup). The subsequent drop was the insulin kicking in.

If I hadn’t had the maple syrup, that more than 200-point drop could have killed me. Until my blood sugar stabilized within normal range, I watched it on my CGM and checked it on my meter every half hour.

Luckily I was able to save myself because I knew what to do. Unfortunately, too many people living with diabetes, had they made this same mistake, may not have been as lucky. Severe hypoglycemia, blood sugar below 40 mg/dl (2.2 mmol/l), can cause convulsions, seizures, a loss of consciousness and death.

Survey Results
Of the 1,000 survey participants, people with both Type 1 and Type 2 diabetes, one third did not know what hypoglycemia is and 42 percent couldn’t describe it. Among those who could, many did not know how to prevent or treat it.

If you think few people experience hypoglycemia, think again. Sixty percent of the study participants had experienced hypoglycemia and it took one third of them to the emergency room for treatment.

Almost half, 49 percent, did not know that a simple remedy, like taking glucose tablets, could help raise their blood sugar back to normal levels.

The survey results indicate that we’re failing people with diabetes not teaching them about hypoglycemia, and I see it as a shameful omission by healthcare providers.

Many health professionals delay putting patients on insulin, which might better manage their blood sugar and help them avoid complications, because of the time investment necessary to educate patients about using insulin — and the fear of a hypoglycemic event without that education.

At the same time, many people with diabetes keep their blood sugar unhealthfully high for fear of being rendered helpless by hypoglycemia.

Citing the lack of education around hypoglycemia, Dr. Evan Sisson, associate professor at the Virginia Commonwealth University’s School of Pharmacy and certified diabetes educator, told me over the past decade practitioners’ focus has been on correcting hyperglycemia, high blood sugar.

Accordingly, rates of hospital admission for hyperglycemia have significantly decreased. Unfortunately, Sisson says the rates of hypoglycemia have increased by almost 25 percent.

AADE and Sanofi U.S., who supported the study, say they’re working to raise awareness about hypoglycemia, but it can’t happen fast enough.

Don’t wait for your doctor to talk to you about hypoglycemia. Ask him or her if the medication you take puts you at risk for low blood sugar. If it does, ask what you need to know to recognize, prevent and treat hypoglycemia.

Here are two trusted resources for more information about hypoglycemia – the American Diabetes Association and the Mayo Clinic.

Originally published in The Huffington Post.

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The Upside of Getting Lost in Managing Diabetes

 

The Upside of Getting Lost in Managing Diabetes

Photo courtesy of Riva Greenberg

This year I’ve noticed something within me compelling me to slow down. It may be age, for my like-aged friends agree.

It’s not that we want to stop working or being exuberantly involved in life. Rather, we want to cling to, be immersed in and more fully savor each passing moment.

I want to feel life, not just race through it. My internal compass is begging me to stress less about the future and get lost in the doing of things.

Yet there is a strong and contrary ethos in our society: We do many things not for the sake of doing them but so that we can get something else or be somewhere else.

We are told to get good grades, not for the sake of learning, but so that we will get into college. We aspire to get a good job, not necessarily for the pleasure of the work or making a contribution, but so that we can afford a big house and nice things.

When I thought about it, I saw that we are also instructed to manage our diabetes this way. We are told to control our blood sugar so that we don’t get complications. To eat less and exercise more so we lose weight. To lose weight so we become less insulin resistant and our other vitals improve.

Yet countless studies show that doing things for their own sake — as opposed to seeing them as a means to something else — makes us happier and more contented.

Social scientist George Leonard calls this oneness with our actions in his book,Mastery: The Keys to Success and Long-term Fulfillment, “getting lost in the practice.”

According to Leonard, bringing our mindful attention to our actions and appreciating what we’re doing for its own sake, is a path to mastery. In other words, we will improve and get where we want to go by being more present in whatever we’re doing.

Imagine being encouraged by your health professional to do your diabetes tasks as caring and nurturing acts and without judgment. I believe managing diabetes would be less freighted with guilt, shame, fear and failure — and, we would become more masterful reaping better management and better outcomes.

Being “lost in the practice” doesn’t mean being forgetful or inattentive. Quite the opposite. It means being fully present, being one with what you are doing. In this space, or lack of, there is no room for berating, judging and criticism.

By eating mindfully you begin to notice what you eat, how it tastes and how it makes you feel. Quite naturally you are likely to begin making more healthful choices.

Taking a walk, mindful of the activity, you feel the breeze and your body growing stronger. You see something notable along the path.

Checking your blood sugar “lost in the practice” becomes an act of cherishing yourself. Your numbers offer helpful guidance only.

I would encourage you to “get lost in the practice” when you perform your next diabetes task. Slow down, take a deep breath, focus on what you’re doing, smile and tell yourself you are happy to be taking care of yourself, that there is no pressure and no need to be perfect. Be singularly absorbed in the task for the sake of the task, the act of loving yourself and nothing more.

Mihaly Csikszentmihalyi, one of the founders of positive psychology, describes being one with what one is doing as “flow.” Csikszentmihalyi discovered that when we are completely absorbed in an activity we feel stronger, in complete control and at the peak of our ability.

Performing your diabetes management in “flow” or “lost in the practice,” your senses are heightened. And while your thoughts aren’t on creating future positive health, your management and your health will almost assuredly improve.

It is in “getting lost” that we actually find a doorway to greater strength. It is in the slowing down that we actually end up going faster.

Originally published in The Huffington Post.

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25 Tips for Living With Diabetes

This holiday season I’m sharing the gift of tips — real tips from real people living with diabetes.

Recently I was approached by a publisher to write a book of diabetes tips from medical professionals. Since those already exist, and most medical professionals don’t live with diabetes, I thought how much better to gather tips from people who actually do.

Alas, the publisher disagreed, so there won’t be a patient tips book, but here’s my patient tips list. Some of these tips, and plenty more, are in my books. Each of these come from diabetes friends, colleagues, peers and me.

These tips are in no particular order, and they won’t all apply to you. However, if you find one or two you can put into practice, your life and your health may vastly improve.

25 Tips for Living With Diabetes

  1. Keep your glucose meter always in the same place so you don’t have to go looking for it. Mine is on my kitchen counter resting beside two small stuffed bunnies always smiling up at me.
  2. Get a dilated eye exam every year from an ophthalmologist. But here’s what no one tells you: Lower the blinds in your house before you leave for your appointment and bring sunglasses — even if it’s raining.
  3. Lancing devices that allow you to check your blood sugar on your palm just below your thumb give you very similar numbers as your fingertips do.
  4. Use a 100-hour timer and set it to 72 hours to know when to change your insulin pump infusion site.
  5. Keep your glucose meter in a brightly-colored case, not the black one it came in. You’ll find it quickly. It may also make you smile more.
  6. Simple carbohydrates spike your blood sugar, requiring more insulin. Insulin is a fat storage hormone. Cut down on refined carbs and watch your blood sugar spikes reduce as well as your waistline.
  7. Drop the idea that you’re going to do this “diabetes thing” perfectly. It’s impossible, and I’m a “recovering perfectionist.”
  8. Exercise in the morning so you don’t have time to talk yourself out of it. I take my hour walk after breakfast before the day becomes a 12-car pile up.
  9. If you use two insulin pens, wrap a rubber band or ribbon around one. It can prevent ending up in the hospital like countless others have who mixed up their pens.
  10. Take a full minute to look at your child/children before leaving the house. That’s why it’s worth taking care of your diabetes. Okay, you can look at your spouse or your dog too.
  11. Clear a path from your bed to the bathroom so when you get up in the middle of the night to pee you won’t hurt yourself or wake up the neighbors.
  12. Opt for plain Greek yogurt instead of regular — it has more protein, less carbohydrates and is way more fashionable.
  13. Use endive, cabbage and lettuce leaves as a scoop for dips and ditch the crackers and chips.
  14. Make two or three boxes of different flavored sugar-free Jello, pour 6-8 ounces into plastic cups and pop them into the refrigerator. When you need a snack, they’re ready to go.
  15. Substitute almond meal for flour when making biscotti or many other cookie type confections. Sure, they crumble, but they taste great and have a LOT less carbs.
  16. Need more exercise? Get a dog.
  17. Replace the clothes on your stationary bike with a book rack. I don’t care, Daily Devotional readings or Fifty Shades of Grey, just get on and pedal.
  18. To raise low blood sugar eat fast-acting carbs such as four glucose tabs or 2 Tbs of honey or a handful of Skittles or drink a glass of skim milk. Two slices of toast with raspberry preserves, three Oreos and a slice of pecan pie a la mode is a slow and — once you’ve looked at the calories you’ve consumed — painful method for raising blood sugar.
  19. Keep cans of soda at home, the office, your briefcase, your locker, in your car. It’s okay to have a sugary drink when your low blood sugar’s making the world a very fuzzy place.
  20. Join a diabetes social media site or make a diabetes friend. You need someone in your circle who “gets it.”
  21. If you take insulin or a glucose-lowering medication, be prepared for lows. Keep glucose tablets or SweeTarts in all your jacket pockets, purses and bags — and sneak them into your husband’s too. Yes, personal experience.
  22. Ask your doctor to write scripts for your pills at twice the dose and cut them in half. Also, see if she’ll give you some samples from that big closet in her office.
  23. If you need to cut down on fat and protein go the Latin way: less meat more rice — brown of course — and beans.
  24. See everything you try to manage your diabetes as an experiment and learn from it. Failure doesn’t exist.
  25. Diabetes is a marathon, not a sprint. Learn everything you can and do the best you can. Then applaud yourself for everything you do and say three Hail Marys and one Jewish blessing that this year your son will marry a doctor.

 

Originally published in The Huffington Post.

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Two Toddlers and Their Brother Speak Out for Type 1 Diabetes

Hanson T1 Diabetes Awareness Video

As many of you know, this is diabetes month. I haven’t written anything particular to honor the occasion. For as a poster declares outside of Central train station in Amsterdam, “For people with diabetes every day is diabetes day.”

But I came across this video and found I had to pay tribute this month to a group of unsung diabetes heroes — the parents of children with Type 1 diabetes.

YouTube Preview Image

Megan, mother of Lincoln and Leland, who each got diabetes two months apart at nearly a year old, created this video to help clear up the many misconceptions about Type 1 diabetes. “I wanted to make people aware. I hoped my twins were cute enough that people would watch,” said Megan. I hope so too.

My friend Tom Karlya devoted his professional career and life to diabetes after his daughter Kaitlyn got Type 1 at age 2. At 13 his son Rob was diagnosed.

“I knew a parent,” Tom told me, “whose child had cancer. “Tom,” she said, “my child is going to win or lose with her cancer. But I could not go to bed every night for the rest of my life thinking, even if it’s the smallest chance, that my child might not wake up the next day. I could not be the parent of a child with diabetes.”

Three months ago, a family friend of mine in California, heard her 8-year-old daughter has Type 1 diabetes. I felt her desperation, stumbling to learn, worry, anxiety and hope for a cure radiate across the country; she was a whirling dervish and stun-gunned at the same time.

Megan’s biggest concern echoes the sentiment of the woman whose child had cancer. “The worst part is I’m constantly worried I may miss one thing, like an overnight blood sugar check, and something terrible will happen.” This is the fabric of everyday life for a parent whose child has diabetes.

To all the mothers and fathers whose hearts haven’t beat quite the same since their child’s diagnosis, whose eyes haven’t closed through the night because of 2, 3 and 4 a.m. blood sugar checks, who have to sit on their 2-year-old to hold them down while pricking their toe to get blood or give them one of their six shots a day, who text their child 11 times when they go on a class trip to keep them healthy and alive, I pay homage.

It is these parents who created the preeminent research organization JDRF and Children With Diabetes. It is Leona Helmsley’s grandson who is using the charitable trust he inherited to fund clinical research, the innovative social media and research-gathering site, Glu, and a myriad of other projects looking for a cure for his daughter.

It is the father of a perfect and beautiful 17-year-old who did die overnight in her bed of hypoglycemia (low blood sugar), who established the Stacy Joy Goodman Memorial Foundation that funds cure work by the renown Diabetes Research Institute.

Megan also made this video because she wanted to share hope with other parents. “I tell my boys,” Megan said, “you can do anything, and diabetes may be your way to change the world for the better.”

Some of us search our whole lives for purpose. Some of us have purpose thrust upon us. Any parent of a child with an illness finds life changed. It’s ironic while their empathy usually expands, we fail to even notice them.

If you have a child with Type 1 diabetes you didn’t cause it and there is no cure, but there’s a great deal of activity toward finding one.

For parents whose child is newly diagnosed, Megan offers to learn everything you can, meet other parents, get involved and know you and your child will come through this.

To all the Lincolns, Lelands, Kaitlyns, Robs, Danis, Stacys, Marissas and Morgans, to every child with diabetes, may you grow up to be healthy and happy, and as so many have told me, look back and see something beneficial diabetes has given you.

To the unsung heroes, parents of children with Type 1 diabetes, living unseen double lives, thank you.

For blogs written by parents of children with diabetes, click here.

Originally published in The Huffington Post.

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The Ultimate Guide to Raising a Child With Type 1 Diabetes (an Amazing eBook)

Joe Solowiejczyk is a registered nurse, certified diabetes educator, family therapist and magician at putting families on the road to recovery when their child has been diagnosed with Type 1 diabetes.

With the publication of Solowiejczyk’s dynamic new digital video book, A Type 1 Diabetes Guide To The Universe, he is making his knowledge, experience and presence — literally — available to families everywhere.

Filled with animations, interactive games, quizzes and presentation videos, this book is like having frequent, real-time visits with Solowiejczyk and his medical and psychologist colleagues. And, feeling the support of fellow parents, children and teens who share their pain, trumps and experiences through their stories.

YouTube Preview Image

Below is my interview with Solowiejczyk about the book, his life’s work teaching families how to raise kids with Type 1 diabetes and his own 55 years living with Type 1 diabetes.

RG: Why did you create this book?

JS: I wanted to give any family the tools to integrate diabetes into their lives in a way that diabetes isn’t the center of their lives, yet its impact is respected. It’s a bit like being able to stand in a fire without getting burned.

For that you need the most up to date medical information, an understanding of family dynamics and the larger picture of your child’s and your family’s life cycles with diabetes. Then you can cope and keep moving forward.

I chose to do a video book so that families feel like they’re in my office, face to face. That interaction is so powerful and critical to the healing process.

The families in the book model amazing strength and hope. To watch others break down and pick themselves up again, while feeling totally supported, you feel you’re not alone.

RG: What will families know immediately when they start the book?

JS: That falling apart and feeling sad, angry and scared are a part of the journey. That it’s not only okay to feel and acknowledge all that comes up with diabetes, but that dealing with the feelings and letting them come up and out are as important as learning how to adjust insulin doses.

As the title of the book suggests, A Type 1 Diabetes Guide to the Universe, they’ll know that with the tools in the book they can do anything and go anywhere with diabetes.

RG: What might surprise parents?

JS: That their support, respect and love for each other has direct impact on their child’s metabolic control. Also, that they should not let their kids “get away” with stuff just because they have diabetes.

They can best help their child cope with diabetes by being the same parents they were before the diagnosis. They should implement the same rules and expectations around diabetes-related behaviors and chores as they’ve created for ordinary things like doing homework, cleaning their rooms, coming home by curfew.

This is probably the hardest part for parents since they feel so pained about the diagnosis already and want to make it easier for their child.

RG: What else should parents know?

JS: Their children will be able to grow and develop with diabetes as they would have without diabetes as long as they take care of themselves. Diabetes-related complications are not a part of the overall picture and are largely preventable if you take care of yourself.

Their kids can still get bruises and broken bones and they’ll heal like anybody else. Their kids can walk around barefoot if they like. The scare about diabetes and foot problems is mostly about adults with Type 2 who don’t take care of themselves.

Having diabetes still means you can do anything and go anywhere. The better care you take of yourself or your child, the less chance there’ll be diabetes-related complications and your child need never be in the hospital again after the initial diagnosis.

RG: In the book you say that some things are non negotiable…

JS: Yes, there are some things you and your child must do, age-appropriately. They may be a pain to do, your child might hate doing them, but has to do them. For instance checking blood sugars at least four to six times a day.

This concept of non-negotiable is critical for parents to get. It is the thing that will determine how their child and family copes with diabetes. You can hate something and still do it!

RG: What are the dangers and pitfalls as kids with Type 1 diabetes grow up?

JS: One of the greatest pitfalls is not learning the lesson above. Based on my clinical work of the last 36 years, not getting that lesson is the biggest contributor to kids not doing well. Kids should be taught to be as independent as possible for their age and maturity.

RG: Part of the book’s appeal is your honesty about your own diabetes…

JS: There are days I really hate having diabetes and yet I love my life. I don’t always do my life gracefully and I don’t always manage my diabetes perfectly but I keep “suiting up and showing up.” That’s a big part of living well with diabetes and, really, the ultimate message. Do your best, make mistakes, pick yourself up, don’t beat yourself up too badly and move on.

RG: Is there any good news about having diabetes?

JS: One has the potential to learn a lot about oneself, what you’re made of. That’s a lesson most kids without diabetes don’t have to learn until they’re older and many adults never learn it. I think it’s what contributes to making kids with diabetes and their siblings “older souls” before their time.

Diabetes has given me an incredibly rich and exciting life. It has brought me deep and lasting friendships, I’ve met so many amazing and wonderful people. It’s taught me to be grateful and given me an invaluable perspective on life and people. It has informed who I am in many ways, but it’s not who I am.

RG: And the bad news?

JS: Diabetes is a pain in the ass, it’s relentless and there are no days off. Some days I want to rant how unfair it is and I give in to a little pity party. I ask some friends to call me every hour on a scheduled day and time and tell me how courageous and inspiring I am.

That day I sit with two pints of ice cream and a sad DVD on and take the first call. By the second call, I’m over it. I know it seems silly, but it helps me acknowledge that diabetes can be tough and helps me more easily move through those sad feelings.

RG: Any final words?

JS: Keep “suiting up and showing up.” Diabetes is a pain in the neck, it’s a lot of work and you can absolutely do what you need to do and have a great life.

Originally published in The Huffington Post.

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Corruption and Culture Increase Diabetes Deaths in India

When I returned from Bangalore earlier this year, having worked with health professionals at a diabetes clinic for the poor, I expected to write about how access to insulin is a human right. I saw the poverty and the need.

But with the recent passing of Reghunath Varma, a young man from India who could afford insulin and died for lack of it, I realized it is not just access to medicine and supplies that needs to be fixed in impoverished countries. It is basic education — and and at times demystifying cultural superstition.

In India, where most people with Type 1 diabetes die because they can’t afford insulin, a young man died because he chose not to take his.

Reghunath Varma was 29. He was told by an acupuncturist to stop taking his insulin — the medicine that keeps people with Type 1 diabetes alive — because the acupuncturist’s treatment would cure him. In India many revere doctors as gods.

During my three weeks in Bangalore at the Jnana Sanjeevini Medical Center, one evening a 23-year-old woman arrived. She had Type 1 diabetes since the age of 5 and already had numerous diabetes complications, including the inability to straighten her fingers.

Riva Greenberg - Diabetes in India - Reghunath Varma
Photo courtesy of Riva Greenberg

She told the clinic’s founder, Dr. S Srikanta, that under the care of her previous doctor, for almost 20 years, she’d been sent to a lab once a month to have her blood sugar checked.

Why did he not tell her to get a home glucose meter where she could check her blood sugar multiple times a day, as is the recommendation for Type 1 diabetes? Because her doctor received a kickback from the lab every month.

At the Jnana Sanjeevini clinic patients with Type 1 diabetes receive free insulin. Unfortunately the clinic can only afford to give enough test strips for patients to check their blood sugar once a day.

Without enough insulin and strips, education and the availability of medical care, as in many remote areas in India, Dr. Srikanta told me up to 80 percent of children with Type 1 diabetes do not reach their 18th birthday. 

Riva Greenberg - Diabetes in India
Photo courtesy of Riva Greenberg

These young girls all have Type 1 diabetes. They were among the hundred children and parents who came to the clinic the day I was there. They come every first Sunday of the month for education and supplies. Many had traveled up to three hours from their homes on as many buses.

That Sunday in January that I interacted with them was the first time they had seen someone who has lived with Type 1 diabetes for a long time.

In India diabetes is growing like wildfire. Insulin, discovered in 1922, is still not available to hundreds of millions of people in the developing world, including in India. Dr. Srikanta supplies what he can from donations from pharmaceutical companies, private and corporate donors and income earned from his for-fee clinic where patients can afford to pay. 

But I’ve learned people don’t just die from a lack of access to medicine and supplies. They also die from ignorance, superstition, profiteering and greed.

Yes, access to essential medicines like insulin must be a human right. And so must education, particularly where cultural myths run deep, and governments’ eradication of corruption in healthcare.

It would shock you even more to know that Reghunath Varma was a “Young Leader in Diabetes.” He was working to raise diabetes awareness and education in his country. Yet cultural forces persuaded him to listen to a doctor who said he didn’t need his insulin.

Originally published in The Huffington Post.

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Let’s Stop Lying About Diabetes

You can’t “control” diabetes. The very nature of blood sugar — whether you have diabetes or not — is to go up and down.

In a non-diabetic body, the pancreas sends out just the right amount of insulin to keep your blood sugar in a safe, normal range throughout the day.

In a diabetic body, you have to do this by guessing and calculating all day long the carbohydrates you eat, impact of any activity and medicine you take.

Every day it’s: How many grams of carbohydrate were in those 10 pretzels? Is my blood sugar still going up? Is my bike ride from yesterday still lowering it? Will half a unit of insulin cover that mini Reese’s peanut butter cup? S#&T! I should have remembered my insulin hasn’t peaked yet, why did I take another two units of insulin? Now I’m dropping and have to eat again!

Don’t even ask me about the angst I experienced last night over eating two-thirds of a sweet potato. Doing so at 10 p.m. I worried if I’d taken enough insulin so as not to wake up at 300 mg/dl (16.6 mmol/l) the next morning, yet not so much that I wouldn’t wake up at all.

Of course sleep, stress, sickness, meds and multiple other factors, including biomedical reactions rarely talked about, also impact blood sugar’s rise and fall.

This idea that diabetes can be “controlled” contributes to the general public’s ignorance. Too many people think, “Well, can’t you just avoid sweets?” It’s not their fault, they keep hearing we can “control” diabetes. This myth of control also keeps those of us who have diabetes frustrate because I’m sorry, but no we can’t “control” it.

Unfortunately too, many health professionals themselves don’t understand the complexity of managing blood sugar. Those who tell patients to eat healthy, drop weight start moving and take these meds, highly underestimate what goes into regulating blood sugar in the human body. A body that, by the way, gets weary of being on diabetes patrol 24/7, and happens to also have a life in which maybe that body just lost her job or her boyfriend.

I’d really like pharmaceutical companies to stop paying celebrities big bucks to tell me, “Diabetes doesn’t control me, I control it!” I know advertising has its own barometer for truthiness, but this is just a smear campaign against those of us who have diabetes.

That said, I’m not saying you can’t influence your blood sugar by your actions. You absolutely can. On a day where I do pretty much the same things I usually do, my influence is largely positive: routine being one of my most critical tools. On other days as hard as I try my influence is not as positive.

After bristling at the word “control” for years, in a recent issue of diaTribe, Adam Brown wrote a superb article highlighting 22 factors that impact blood sugar. He confirmed just how complex managing blood sugar is, and frankly, that you can only “get it” if you have it.

Adam went on to share his four game-changers that help him manage his diabetes, so I want to share five of mine.

Here are five things I’ve done over my 42 years living with Type 1 diabetes that have helped me significantly — not control my diabetes, but positively influence it.

1. Reading Dr. Bernstein’s book, Dr. Bernstein’s Diabetes Solution. While I didn’t go as low carb as he suggests, I did remove a great deal of the carbohydrates from my die Dting so stopped me from “riding the roller coaster” of high and low blood sugars. If you have Type 1, it’s required reading.

2. Going to health conferences. My first was TCOYD (Taking Control (yikes!) of Your Diabetes. There CDE/psychologist Bill Polonsky said 12 words that changed my diabetes life. He asked the 80 of us sitting in the room, “Who thinks diabetes is the leading cause of heart disease, blindness, amputation and kidney disease?” Everyone raised their hand, including me. Then he said, “You’re wrong. Poorly-controlled diabetes is the leading cause of these things.” In that moment 32 years of diabetes stress rolled off my shoulders and I knew, while I couldn’t control it, what I did to influence my health mattered.

3. Fix blood sugars in real time. When I used to check my blood sugar between meals and it was high, I would wait until the next meal to add a correction dose of insulin to my mealtime dose. Now I take a correction dose in real time.

4. Get some diabetes friends. One or two may do. Belonging to the A1C Champions peer-mentor group I have 79 and I’m grateful for each and every one. I said it before, no one “gets diabetes” like someone who has diabetes.

5. Portion control. I’ve lost 35 pounds and kept them off. I started by leaving two bites of food on my plate, every meal. Then I married a Dutch Indonesian man who is six feet tall and weighs 125 pounds. Truth is, while there’s nary an ounce of vanity in me, weighing more than him, well it’s a motivator.

I’d like everyone who has diabetes to stop suffering from this lie that we can control blood sugar. We can’t. And, I truly wish everyone diagnosed with diabetes from this day forward would hear this from their health care professional.

“Taking care of diabetes is hard, but doable. Forget the idea that you’re going to do this perfectly! You are now manually performing a bodily function that your pancreas use to do automatically. Your blood sugar will fluctuate.

“You won’t always get it right, but I will help you figure it out and know what to do. You’ll do well enough that you’ll have an excellent chance to live a healthy, full and happy life. I want to commend you for taking this on. Now let’s get started.”

I’d hire that doc in a minute.

Originally published in The Huffington Post.

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Simple Personal Systems for Big Health Benefits

Have you been trying to lose weight or start exercising and can’t get started or you’re failing?

Simple Personal Systems for Big Health Benefits

A typical breakfast meeting spread. Photo courtesy of Riva Greenberg

 

We like to think that our accomplishments are based on our merits, how strong and capable we are. And that what most influences our success is having enough smarts, money, motivation and/or willpower.

Yet we’re often unaware of a powerful influence on our success or failure — the “systems” we live within. This is the infrastructure that supports your behaviors — both wanted and unwanted.

For example, and I’ll take a wild guess but here goes, part of the reason you’re able to brush your teeth one or more times a day with ease is because of the system you created. Like keeping your toothbrush in the same place. Probably near a water source and within easy reach. It may also be in plain sight which acts as a visual cue. And you probably keep the toothpaste nearby.

When we try to make a change like losing weight or exercising, going back to school or advancing at work, to a large degree it’s the systems around us that either help ease us forward or hold us back — both our own personal systems and societal systems that we must navigate.

Ann Albright, director of the division of diabetes translation at the Centers for Disease Control and Prevention, confirmed the impact of our societal systems on diabetes management saying, “While we have to think about what the individual does and individual responsibility, the individual does not live in isolation. We all are influenced, and supported or undermined, by those other circles (societal systems).”

So when you come out of the doctor’s office and he’s just told you to lose 20 pounds and start exercising, you need an infrastructure that supports your behavior — both at home and outside your home — to achieve these goals. Otherwise, it’s easy to find yourself with your coat on racing to the car when a mouth-watering ad for hot, cheesy pizza comes on TV.

Luckily we can design personal systems that help support our desired actions wherever we are. With just a few simple steps you can greatly improve your health.

Broken Societal Systems
Unfortunately, many of our societal systems are not designed to support health. We have poor access to affordable healthy food, fertile soil to grow nutrient-rich food, fresh air and water, recreational space and family and community support.

Fast food restaurants are more plentiful than healthier ones, especially in small towns and cities across America. Agricultural policies and food subsidies support the overproduction of corn so metabolically unhealthy high fructose corn syrup now sweetens everything from crackers to ketchup.

Factory farming breeds profits and too often e coli. Saturday morning TV advertising to children is abundant and unlegislated. Schools needing to supplement their budgets have made Pizza Hut, Taco Bell and Burger King their primary lunch suppliers.

While people cried, “nanny state!” when Mayor Michael Bloomberg tried limiting the size of sugary sodas and drinks in NYC, we’re already living in a nanny country.

Regarding our health care system, doctors are incentivized and rewarded to perform costly tests and surgeries, not preventive care. Insurance companies limit blood sugar test strips, limiting people with diabetes’ ability to stay healthy. Many insurers don’t cover insulin pens, which among people with Type 2 diabetes particularly, foster more responsible insulin behaviors.

Of course some would say these systems aren’t broken; that they support the country’s chosen economic engines of capitalism and shareholder value.

That said, I hope we won’t have to wait until we are a nation of sick people to realize that healthy individuals are also an essential engine for economic growth and prosperity.

Certainly we can work on changing societal systems through political action and advocacy. More immediately we can design personal systems that support our own healthy behaviors.

Designing Systems

Over the years I’ve designed several systems that support my diabetes management. For instance, I keep glucose tablets under my pillow and in every coat and jacket pocket, purse and pouch, and I check my supply frequently and replenish it. I’m always prepared for low blood sugar.

I keep my meter always in the same place in my home so it’s easy and convenient to check my blood sugar. This helps me check frequently without the, “Where’s my meter?!” drama.

I’ve arranged my workday so that I can walk in the morning from 9:30 to 10:30 a.m. and I keep my walking gear in sight and accessible so it’s easy to grab and go.

I bring my own food to the airport because I never trust that I’ll find something healthy to eat there.

A few years ago I asked people what healthy habits they had created that helped their diabetes management. What they really told me was their systems. Like having three meters and keeping one at home, one at work and one at their parent’s house. Keeping cans of soda at work in a desk drawer for a low and informing one or two people at work about their diabetes and what to do in case of emergency. Simple steps that underlie success.

To design systems for diabetes health (or substitute “general health”) ask yourself:

1. What specific task in my diabetes management can I make handier, simpler, easier, less time consuming? How?

2. Where am I really falling down in my diabetes management? For instance, remembering to take my pills, checking my blood sugar, refilling my medications before I run out, preparing healthy meals? What steps can I put in place to make me more successful?

3. How can I manage the challenges to my diabetes management outside my home? For instance checking my blood sugar when I’m in a meeting, eating healthy at the airport, exercising when I’m away from home? What simple steps can help me overcome my challenge?

4. What can stop me while creating this healthier behavior and how can I prepare for that?

When my dear friend got a brain injury some years ago, her therapist focused on helping her create compensatory strategies — new ways (systems) to live a functional life on her own again. She did, and she’s succeeded beyond expectation. Designing systems for health is really no different.

While intention, motivation and desire may fuel our actions, it’s often our systems that determine whether or not they’ll be successful.

Originally published in The Huffington Post. 

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