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

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.

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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.

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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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Would the Marlboro Man Get Diabetes Today?

I just returned from Findlay, Ohio where I addressed 25 people with Type 2 diabetes. Most of them use insulin and most rely on Medicaid for their insurance.

Yet Medicaid doesn’t cover the cost of enough test strips for them to use insulin responsibly — so their blood sugar and their health suffer. It’s harder for them to control their weight, and two had already had a heart attack.

Medicaid also, like many health insurance plans, doesn’t cover a simple device that makes taking insulin much easier, more convenient and less frightening: an insulin pen. Insulin pens replaced vial and syringe years ago in Europe.

I mention Europe because I’m married to a European. That causes me to see America a little differently. While we both admire America’s “can do” spirit and individualism, there is a downside.

Our cultural reverence for going it alone, making it on your own and pulling yourself up by your own bootstraps — think that great iconic Madison Avenue figure the Marlboro Man — often obstructs us from strength gained by working together.

Personal and social responsibility

It’s no surprise our beloved self-determination is expressed in chronic illness. In diabetes, we repeatedly talk about “self-care,” “self-management” and “self-efficacy.” It is the patient’s responsibility.

Certainly I believe people with any illness must take personal responsibility. But think how much stronger and capable we’d be if our environment supported our health.

What if in addition to “self-efficacy” there also existed “social-efficacy”?

That would cause healthy food to be widely available and affordable. Legislative policies would support big food manufacturers making a profit while making foods that actually nourish our kids.

You could walk and bicycle easily in towns and cities. People would gather in community squares, minimizing loneliness and increasing physical and mental well-being.

Health care providers would see their role as both expert and partner. Health insurance companies would see their mission as, and tie their financial targets to, keeping people well. Not earning their money charging customers exorbitant fees as their health erodes because they couldn’t get what they needed to stay healthy in the first place.

Tony Schwartz, CEO of The Energy Project and management guru, helps companies institute work policies and processes that first and foremost address employees’ needs and values. The result? Companies become more prosperous and workers become more productive, happier and able to consistently renew their energy.

Schwartz’ recent article, “Why You Hate Work,” is a business case for social-efficacy.

Getting back to the Marlboro Man
As I waited in the airport for my flight home from Ohio, I searched for something healthy for lunch. It didn’t exist.

The mantra in public health, “People will make the healthy choice when the healthy choice is the easy choice” is a clear cry for social-efficacy. Personal responsibility has not turned the tide on obesity, nor will it turn the tide of diabetes.

So, as I scraped the unidentifiable cheese-like sauce off my chicken breast and after paying an extra 99 cents for broccoli instead of fries, sitting in the Port Columbus International Airport, I wondered if the Marlboro Man existed today, would he get diabetes? I decided he would.

Walmart and a high end investor would have bought up the range, so Mr. Man was now living in town. With no job skills, his minimum wages from flipping burgers would have him dining nightly on the strip: Taco Bell, Kentucky Fried Chicken, Popeyes and Krispy Kreme. A dinner and a man-size Coke, $4.99. The same cost for a head of cauliflower and broccoli.

His diabetes, not to mention his high blood pressure from his salt-laden meals, means he’s twice as likely to get a heart attack or stroke as people without diabetes. 
The final irony? Because of his heart attack risk, Mr. Man’s physician takes away his cigarettes! Of course being a cynic he may have died years earlier from lung cancer.

What needs to happen
It took policy makers, agricultural people, big tobacco’s own workers and media — social efficacy — to make smoking uncool. Now we need politicians, food manufacturers, lobbyists, urban planners, marketers, health care professionals, dietitians, farmers and philanthropists to support our health.

To prevent diabetes we need to be able to feed our families healthy food and create more ways to move, not less. To stay healthy with diabetes and minimize complications, patients need access to essential medicine and tools.

Over the last few years cities like Cleveland and New York and states like Colorado, Pennsylvania and Delaware have been adding walking and biking paths. They know the power of social efficacy to create change. For while we may be strong alone, we are often stronger together.

Originally published in The Huffington Post. 

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The Factory Farming of Patients

When did we decide medicine was more about making money than making people well?

Yesterday I went for my annual mammogram. I go to the same medical imaging center each year. I know the drill — take off shirt and bra, put on a thin blue robe open to the front. Wait in the communal area with the brown vinyl overstuffed chairs.

But yesterday, this clinic’s core technical ability — imaging — was noticeably absent from the interactions between the staff and patients.

None of the receptionists and technicians actually saw me that day. Nor as I could tell did they see any of the other women who sat quietly, flipping magazine pages, hoping desperately to receive no bad news. 

The indifference began at the reception desk. A young girl sitting behind a high ledge asked for my birth date to identify me, never looking at my face. Unfortunately, on this day, that indifference culminated in what I now think of as an example of “exquisite awfulness” for one woman.

While waiting in the communal area, pale and frightened, almost hyperventilating, she beseeched me, “Do I have cancer? The girl told me to wait here. They have to look again. I must be sick, mustn’t I? Ay, Dios mio! Dios mio!” 

At this clinic, most women have a sonogram after their mammogram. When breast tissue is dense and fibrous a mammogram can’t clearly show the presence of calcified cells, tumors or cancer. 

Yet, the mammography technician did not tell this to the now hyperventilating woman. She told her only to sit down again in the waiting room for another test. 

Increasingly, I experience “care” being filtered out of health care.

We now revere technology and machines. Plus, institutional guidelines compel providers to push as many patients through their offices, in assembly line fashion, as quickly as possible.

This factory farming of patients — our focus on profit and efficiency at the expense of patients’ welfare — is soul-crushing, and not just for patients. Medical professionals have become disconnected from their own humanity and providers and patients have become disconnected from each other.

In providers’ hurriedness, the small kindnesses are falling away: a smile, a handshake, a few warm words, making connection. As care drops out of health care we are paying for it; we are sowing greater dis-ease. 

Hearing my name called by the technician for my mammogram, I clutched my flimsy gown to keep it from flapping open while I raced behind her; she was already 20 feet ahead of me down the corridor. 

When the procedure was over, I got a hand wave to the room I was to sit in next. The same hand wave stockboys use to indicate where the item you just asked for is. But, inevitably you are left to look for it yourself.

I am not suggesting, by any means, that we give up our medical and technological advances. I am suggesting that in our esteem for hardware, that we do not forfeit “heartware.” That we recognize tending to each other, particularly when we are at our most vulnerable, is the very meaning of care. And that care is, in and of itself, healing.

Bernard Lown, M.D., winner of the Nobel Peace Prize, writes in his book, The Lost Art of Healing:

A 3,000-year tradition, which bonded doctor and patient in a special affinity of trust, is being traded for a new type of relationship. Healing is replaced with treating, caring supplanted by managing, and the art of listening is taken over by technological procedures … Patients crave caring, which is dispensed largely with words.

 
 

If you doubt that just a few moments exchange with another person can raise one’s spirits, a behavioral experiment conducted on the Chicago subway confirmed this truth.

As reported in the New York Times article “Hello Stranger,” those people who engaged with their seatmate in a few minutes conversation on the subway — that bastion of don’t look at anyone and don’t under any circumstances talk to anyone — said it made the ride more positive and pleasant.

Further, while most people think our well-being is mostly dependent on our closest ties, the study reported that people felt happier on days when they had more interactions with simply anyone. 

Dr. Rachel Naomi Remen, who created The Healer’s Art, a national curriculum in 70 medical schools for students to explore service, compassion and healing writes how medicine has lost its heart.

In her book, My Grandfather’s Blessings, she tells a story of three stone cutters. Each day all they do is cut blocks into rocks. When someone asks the stone cutters, “What are you doing?” the first yells furiously, “You idiot, you see what I am doing! I am given a rock and I cut it into a block!”

The second says gently, “I am providing for my family, giving my wife and child a comfortable home and food to eat.” The third beams and says, “I am building a great cathedral where people who have gone adrift and are afraid will be able to put down their burden and let God shine into their souls.”

What we do matters and how we see our work matters. It guides how, and the spirit with which, we do it. The factory farming of patients is not medical professionals’ choice, it is the result of a health care system that too often values profit over people. Profit and care must not come at the expense of each other, they must be combined.

We must also train medical students that good medicine is both the result of modern technology and the simple exchange of comforting words or holding someone’s hand.

And we must help those who went into health care reconnect with, and reinvigorate, their original desire to help others. So that they can stitch back into their work the essential fabric of service that was once woven into health care.

After all, we know in our hearts that being seen by our fellow human beings is as necessary to good health as being seen by an expensive imaging machine.

Originally published in The Huffington Post.

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28-Year-Old Erin Little Is Changing Diabetes Care in India

“Every day I see children, 10 years old, going blind because their families can’t afford insulin. That is what inspires me to fight for them. Who will speak for them if no one shares their story?” 
– Erin Little

Diabetes Care in India

Erin Little on right.
Photos courtesy of Riva Greenberg.

 

Eighteen months ago, through a Skype conversation, I met a young American woman named Erin Little. In January, I spent 18 days in Bangalore, India because of her.

Erin has been living inside the Jnana Sanjeevini Medical Center for the poor in Bangalore. She is working tirelessly to better the health of people who live in India’s villages and have no access to health care.

What drives an American woman in her 20s to found a social enterprise company, Sucre Blue, dedicated to empowering community health leaders in India — and live inside a hospital?

Erin is my 19th interview with a change agent in diabetes.

RG: What is Sucre Blue’s mission?

EL: We are creating a chronic disease health model to bring affordable access to medical treatment to people who have diabetes, hypertension and cardiovascular disease.

The program is now training dozens of patients and caregivers in rural villages to be health leaders in their communities.

They literally go door to door surveying their villages’ residents’ health, checking who may have a chronic condition and be in need of treatment.

Diabetes Care in India - village visit

Bringing medical care and supplies to a village two hours from Bangalore city.

With the second fastest growth of diabetes (IDF Atlas 2013) and 70 percent of the population living in rural villages, India is struggling to provide medical access for chronic conditions.

Sucre Blue operates where the typical community has no doctor, hospital or medical treatment available within a 20-mile radius. Our typical patient household earns less than $2 a day. 

RG: What drives you to do this work in India?

EL: I was born in Kansas, raised in Missouri, and most of my relatives are from Louisiana and West Virginia. I grew up with strong roots to small, rural communities. India has a lot of similarities to America’s south in terms of hospitality, tradition, family and community. To me, it feels familiar despite the fact I was living in Chicago for almost 10 years before moving to Bombay in 2012.

I’ve also lived with Type 1 diabetes since the age of 11. I was diagnosed when attending a church camp in southern Missouri. There was no adequate medical care there, so I was life-flighted to the University of Missouri Columbia, where I was hospitalized for almost a month.

There is a phrase in Sankrit, “Vasudhaiva Kutumbakam.” It roughly translates into, “The world is a family.” For all of India’s traditions, which in some way make things here immovable, it is also a place constantly growing and open to change. Here I can have a true impact to make things better, and I can listen more easily to and hear more clearly what my heart is telling me.

Clinic visit - India

Clinic visit

RG: How will your project benefit people immediately and long term?

EL: Right now we provide screening, diagnosis, ongoing monitoring and free medicines. And, we are working at prevention through early detection, awareness and education.

Our long-term goal, and what we’re focused on at a policy level, is replicating and scaling this social enterprise model at an affordable cost and in a way that it’s sustainable and can provide continuity of care. Many of the patients with diabetes, for instance, will need care for complications. So we also want the presence of a clinical institution that actively invests in patients’ and the program’s success and growth. 

It’s challenging to understand the value of prevention services. But when you look at the cost difference between putting a diabetes patient, for instance, on dialysis versus managing their condition early through a community based intervention, a country like India can save potentially billions of dollars. 

RG: How does an American design a program for local Indian villagers?

EL: This program is designed to be patient-centric and led. Believe it or not, this is where living inside the hospital is a huge advantage. I’ve lived in India for almost three years, and as someone managing my own Type 1 diabetes in India, I understand how the system works here.

Our partners play a huge role in designing the program to local requirements, gathering feedback and harnessing the power of these communities. We do a lot of listening before we speak. 

Regarding culture, recently we had a big debate about whether the village women health leaders should wear white lab jackets when they conduct their door-to-door screenings.

Many were against it, thinking the health worker wouldn’t be let into homes; that people would think they were government officers. But the woman who tried it told us many patients came to her thinking she was a nurse which made her job easier!

RG: How are you able to finance this project?

EL: It hasn’t been easy. There are relatively few foundations and institutions that do diabetes development work. There’s little understanding that non-communicable diseases like diabetes, and getting care and medication, is a human rights issue. 

Initially we received an idea-stage grant from Ashoka in a competition called“Transforming Health Systems” supported by Boehringer Ingelheim. I raised some additional funds through friends and family to begin the pilot and I’ve been financing our work thus far with support from an organization called PAVE.

Just this month Sucre Blue received a large program grant through World Diabetes Foundation that may make it possible to reach 50,000 patients by 2015! That said, we still need support, now more than ever, since the grant doesn’t cover costs for myself or salaries.

Toward that end, on April 12, my 28th birthday, we launched a 28-day fundraising campaign (video in train station of campaign launch.) It ends May 10, although of course donations are always welcome. We want to ensure that those who’ve donated thus far will see the difference they’re making, that people who live in poverty will have access to affordable health care.

In India, unlike the West, many patients’ diabetes is caused by malnutrition. Less than 50 percent of cases are caused by lifestyle (Public Health Foundation of India Certificate Course in Diabetes Management). I am disappointed so many Westerners think diabetes is a rich man’s disease. Every day I see children, 10 years old, going blind because their families can’t afford insulin.

I hope and I believe chronic diseases will be the next priority to be addressed in Millenium Development goals, especially as global health challenges like polio and malaria are being eradicated. 

RG: What has been surprising thus far?

EL: I used to be surprised when I would hear mothers say they wanted to kill their child who has diabetes, and kill themselves, because they couldn’t afford the medicine. 

I was surprised to live inside a clinic and not earn a salary. But I am more surprised when people are more afraid for my livelihood than my character, of not doing what I know is right.

Frankly, I’ve been surprised by what we’ve achieved in less than a year even when what I have felt called to do seems impossible and have little to nothing materially to gain. 

The average Type 1 diabetic spends more than 25 percent of their income on their health (IDF Diabetes Atlas 4th Edition, Economic Costs of Diabetes Report). Many with Type 1 and Type 2 have dealt with extreme poverty caused by this disease.

Whether you are a family battling terminal cancer and foreclosing on your home in Ohio, or a man selling his last cow in the fields of Uttarkhand to manage his diabetes after contracting tuberculosis, Sucre Blue is trying to shift the same paradigm.

RG: What do you hope the future looks like?

EL: Having the capital required to replicate this model for care and give people back their lives without bankrupting them across the developing world.

No patient should feel like a beggar or live without dignity. We do not choose to have a disease, and we have the right to live fully. But in many parts of the world, like here, that luxury doesn’t exist.

Schoolchildren in a tiny, one street village minutes from the village visit

It has been humbling, and motivating, to live here and do this work. There are days I wonder how I can continue, the other days I know I cannot stop.

RG: What can someone do to help?

EL: Anyone can make a donation donate on our website. We are also actively recruiting board directors and advisors to help us grow and progress our mission, to support those with non-communicable diseases across the world.

We’re also in the process of building service trips to our villages. If interested, please contact us at info@sucreblue.org to find out more about coming to Bangalore, India.

I learned while in India, the region has the second highest number of deaths in the world due to diabetes. Erin’s work aims to change that, providing care for India’s poor, many of whom now travel up to half a day to reach the nearest clinic or doctor.

Originally published in The Huffington Post.

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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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