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

The Hidden Cost of Diabetes Devices to Patients

I want to thank those who create the amazing devices that make my diabetes easier to manage and help me stay healthier. That said, there’s a cost to new technology and devices we never talk about. It’s the one to patients. And I’m not talking financial.

While devices lighten the burden of managing my disease, they also create new burdens.

Patients who use diabetes devices must among other things:

  • Invest time, effort and brainpower researching which device, among the many, are best for them
  • Often spend time and aggravation dealing with their insurance company
  • Spend time in training sessions learning how to use their device
  • Know what to do when devices err
  • Manage potential danger to one’s health when devices fail
  • Be cool-headed and adaptable when the data makes no sense
  • Upload data for their own and provider’s use
  • Make space on their body and give up their vanity
  • Find accessories for, and carry around, a ton of equipment and backup supplies
  • Sit on the phone with customer service reps at all hours of the day and night

As tiring as it is to manage a chronic illness like diabetes, managing devices adds another layer of complexity and fatigue. And, as invisible as my Type 1 diabetes is to everyone, the responsibility of managing devices is also invisible.

I see a steady stream of this on my Facebook page — “Soooo, this happened again. Called Tandem… sending me out a new pump (again) since this is the second time it happened…

The Hidden Cost of Diabetes Devices to Patients

*Posted with permission from its owner.

I hope that by acknowledging the burden patients bear using devices, device developers, health care providers and insurance companies will do more to lighten it.

Device engineers and designers need to spend more time understanding what a day of living with and managing diabetes is like. Many rarely even speak to patients. Digging deeper into the patient experience would lead to devices and technologies that better serve our needs and fit more seamlessly into our lives. Aka more convenience, less hassle.

Health professionals should understand that when they equip a patient with an insulin pump or a continuous glucose monitor, even sometimes an insulin pen, it’s not necessarily “problem solved.” It’s often the beginning of new challenges.

For example, fitting the time that devices require into one’s life. Taking pains to prevent or address rashes that occur from devices’ adhesive. Stressing out because you forgot to put your CGM receiver into a changed purse. Dealing with insulin pump tubing that gets caught on doorknobs or blocks the flow of insulin, sending one hurtling toward dangerous Diabetic Ketoacidosis.

Empathy and support from health care providers would go a long way.

Insurance companies must accept that there may be extra financial cost involved to using devices and allow for it because technology sometimes fails.

Dexcom sensor on stomach, Freestyle Libre sensor on upper arm.

Dexcom sensor on stomach, Freestyle Libre sensor on upper arm. Photo courtesy of Riva Greenberg.

My Trial

Finally, there is another cost to diabetes devices — a psychological one. Can we trust the information our devices give us? Do we feel safe using them?

I just conducted my own device trial. For a week I wore my Dexcom continuous glucose monitor (CGM) and the new Freestyle Libre flash glucose monitor from Abbott (currently only available in Europe and the UK). I wanted to compare their performance and the data they gave me.

Dexcom receiver on left, Freestyle Libre reader in middle (3.9 mmol/l = 70 mg/dl). My meter on right.

Dexcom receiver on left, Freestyle Libre reader in middle (3.9 mmol/l = 70 mg/dl). My meter on right. Photo courtesy of Riva Greenberg.

As you can see on the graph below, and as is depicted in the photo above, the Freestyle Libre (red line) ran almost consistently 20 to 30 points lower than my meter (blue line). Since my Dexcom is calibrated with my meter during the trial it tracked pretty closely with it.

My Trial 3 - Chart

The Freestyle Libre, however, has no mechanism for calibration. So while that means you get a glorious 14 days (life of a sensor) with no finger pricks, how do you know which device and data to trust? These numbers are what I base my everyday life-saving/life-threatening decisions on.

Trial Two

To see if I’d get the same low bias from a second Freestyle Libre sensor, I ran the trial again. Or hoped to. The day I put on the sensor, it fell off within three hours. It happened somewhere between my home and the grocery store. Likely it got knocked off by the backpack I use to carry groceries.

The Freestyle Libre sensor is only approved for use on the back of your upper arm. It would seem the designers should have considered the limitation of this single location.

The Dexcom sensor I had put on for Trial Two malfunctioned on the fourth day. Dexcom is approved for seven days of wear. I called Dexcom. A pleasant customer service rep said they’d send a new sensor.

But it cost me 20 minutes on the phone and the first day investment I always make in a new sensor. It’s not until day two, after 24-36 hours of warm up and calibration, that my Dexcom tracks with my meter.

Diabetes devices are life-enhancing. For the most part they give us remarkable capacity to better manage our health. I well remember 40 years ago when we didn’t even have glucose meters.

But we must recognize that new technology also adds effort, frustration, discomfort, confusion and expense to patients’ lives. Let’s design devices with the aim to lessen those costs.

In actuality, we’re still in the Beta phase when it comes to medical devices. And it’s patients who bear the work and weight of testing them each day.

Disclaimer: I was not asked by Dexcom, Abbott or any other device company to write this article.

Note: Glu, the online Type 1 diabetes research community, is studying the impact of diabetes technology on partners of people with diabetes who use insulin pumps and continuous glucose monitors. If you’d like to participate, please click here.

Originally published in The Huffington Post.

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People Disgusted by CrossFit’s ‘Open Diabetes’ Coke Tweet

Crossfit Diabetes Tweet

In a tweet Monday CrossFit’s CEO Greg Glassman took credit for the above image. It created a backlash on social media. Mostly among people with Type 1 diabetes and parents of Type 1 kids.

Many parents were incensed that Mr. Glassman made it sound like their 2-year-old gave themselves diabetes by drinking too much Coke. Once again Type 1s have been scooped up in the shame-mongering diabetes net.

Many tweeted, “Know the difference between Type 1 and Type 2 diabetes!” Glassman responded that he did and that Type 1s can get Type 2 diabetes too. Which is true if you become overweight and insulin-resistant.

Yet the major fallacy here is that drinking soda causes diabetes. Once again the mythgods have been roused from their slumber.

Crossfit Diabetes Tweet - Comments

I don’t like to see anyone judged for having diabetes or made to feel shame or guilt about it. And as a Type 1 it’s so damn tiring to constantly tell people, as wrong as they are, if you mean Type 2 diabetes say Type 2 diabetes.

But as the voice of reason I am also curious. No one seemed to ask Mr. Glassman, “What did you mean to say with this image?” So I reached out to Glassman via Linkedin but got no response from him or CrossFit.

The upset and what diabetes is
So many things about this image riled people. First, it’s wrong factually — you don’t get diabetes simply from eating or drinking sugar. Second, it’s wrong to shame and blame people. Third, “homies” feels like a racial slur, and that’s always wrong.

If I broaden my mind, however, this image could also be seen as an attack on Coke and other makers of sugary drinks. It could be seen as an attack on our government for subsidizing unhealthy high fructose corn syrup rather than fruits and vegetables.

We may never know Glassman’s intent, but I know by reputation he likes to provoke. So since Glassman started this, let’s set the record straight, once again.

You don’t get diabetes from eating sugar
You don’t get any type of diabetes from eating or drinking sugar. Doing so, however, may lead to weight gain, and being overweight is one of the three major risk factors for Type 2 diabetes. The others are being sedentary and having a family history. That said, many people with Type 2 diabetes are normal weight.

To make Type 2 diabetes and weight more complex, the jury is out whether being overweight causes insulin resistance (the major characteristic of Type 2 diabetes where you become resistant to the effectiveness of your own insulin) or insulin resistance causes being overweight. Eating too many refined carbohydrates (simple sugary and starchy foods) causes your pancreas to keep pumping out excess insulin. Since insulin is a fat storage hormone too much of it floating in your blood stream can cause weight gain.

Type 1 diabetes has nothing to do with weight or being sedentary
Type 1 diabetes has no known cause or risk factors yet, other than perhaps family history. Type 1 diabetes has nothing to do with weight or being sedentary, it is an auto-immune condition. Your body kills off your insulin-producing cells. You no longer produce insulin or you may produce a trace amount.

To survive, people with Type 1 diabetes must take insulin every day either through an insulin pump or by giving themselves typically four to 10 injections a day. Every day, no vacations. We walk a tightrope 24/7 between life-threatening low blood sugar and complications from high blood sugar over time. As many people also tweeted, Coke can be life-saving if we’re having low blood sugar.

Regardless of diabetes, I believe sugar in any quantity is toxicTuftsNow reported this month that consumption of sugary drinks may lead to an estimated 184,000 adult deaths every year worldwide. Mexico has the highest death rate attributable to sugar-sweetened beverages and the U.S. comes in second. Not something to be proud of. Even more worrying is death attributed to sugary drinks is higher among young adults than older adults.

What we need to do
Sugar doesn’t directly cause diabetes, but too much of it is unhealthy. Shocking ads don’t motivate people to do better — they do the opposite. Being clever has its place but not when it comes at the expense of others. And Mr. Glassman, whether you know the difference between Type 1 and Type 2 diabetes, you’ve taken us all a step back.

Back to the day when Coke’s old jingle is now remarkably appropriate in a way I’m sure they never intended. I’d like to teach the world to sing in perfect harmony what’s true about diabetes.

  1. Type 1 and Type 2 diabetes share some commonalities but are very different conditions
  2. Whichever you have, diabetes is tough to live with and manage
  3. Diabetes can have dire consequences on a daily basis and over time
  4. We did not cause Type 1 diabetes, it is not our fault
  5. We still need to find the causes for all forms of diabetes, and their cures
  6. People do not respond well to shame and ridicule
  7. We will all do better when our politicians and company executives make decisions that support people’s’ health and each of us takes personal responsibility for our own

Originally published in The Huffington Post.

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11 Diabetes Things I’ll Tell You That Health Care Providers Won’t

Last week I had lunch with a friend who’s also an extraordinary diabetes nurse. Waiting for the meal she asked, “Why aren’t you injecting now?” I didn’t say what she expected, “It might take longer for the food to come than expected.” No, I said, “How do I know how much I’m going to eat until I taste the food?”

“This is what you should tell people!” she said slamming her hand down on the table. “All the things you’ve learned. All the tricks we don’t know.” This from my friend who has educated thousands of people with diabetes and has a zillion titles and letters after her name.

So here are 11 things I’ve learned about managing blood sugar from my everyday experience. Any may help you and you’re not likely to hear them from your doctor.

11 Diabetes Things I’ll Tell You That Health Care Providers Won’t

Cartoon by Haidee Soule Merritt.

1. Don’t take your insulin until you actually taste the food. Okay, you already know that now. But here’s what to do. Take half the dose you think you should 15 minutes before the food arrives provided you’re not low. Take any remaining insulin after you taste your meal and know how much of it you’re going to eat.

2. Get pen cartridges instead of vials. My 90 day insulin supply through my direct mail pharmacy is three vials. For my mealtime insulin I use vial and syringe. If I order insulin cartridges (for an insulin pen) instead of vials, I get 15 cartridges. You do the math. You don’t need to put the pen cartridge in a pen, use it like a vial. Extract the insulin with your syringe. However, don’t push air into the cartridge as you do with a syringe. And do look for air bubbles in the syringe when you withdraw the insulin. If you get them, just flick them out. Don’t extract insulin from an insulin pen with a syringe, just the cartridge itself.

3. Everyone, stop saying “control!” I wish people would stop using that word. Yes, you can absolutely do things to influence your blood sugar, but you cannot control it. There are too many variables at play: stress, illness, exercise and its lag time, alcohol, carb guessing with food labels and meters up to 20% inaccurate. Managing blood sugar is not as simple and straightforward as your doctor seems to think.

Plus you can only do as well as our present day tools permit. My management would be far better with faster mealtime insulin.

And, take yourself off the perfection pedestal otherwise you’ll get knocked off every day. Just do your best, appreciate your effort and keep breathing.

4. Take a small amount of insulin to blunt your morning rise. Due to the Dawn Phenomenon, my blood sugar rises like a runaway train in the early morning hours. I take 1 unit of rapid-acting insulin as soon as I wake up, usually around 6:30 or 7 A.M. It halts the rise. I take the rest of my dose with breakfast usually an hour later.

5. You CANNOT have blood sugars close to normal without having lows. It’s your choice – you can let your blood sugars run high or if you want to be nearer the lower side of your target range often, know you WILL have lows. Be prepared. I carry glucose tablets in all my purses, pouches, pockets and knapsacks and keep a stash in the kitchen and by my bed. SweeTarts and Smarties work fine too and are nicely portable.

11 Diabetes Things I’ll Tell You That Health Care Providers Won’t 2

Cartoon by Haidee Soule Merritt.

6. Reuse syringes and pen needles unless they break, bend or lodge in your body. No, don’t reuse bent or broken needles, ever. And, yes I’m kinda joking, but while needles dull with reuse, you can safely reuse them a few times. Use them for a few days or a week depending on how many shots a day you take. Stop reusing when you notice you feel the shot more than you should.

7. Stop eating a lot of carbs. The sugary foods (cakes, cookies, muffins…) and starchy foods (bread, bagels, pasta, potatoes, simple grains like coos coos…) you love, spike your blood sugar – and then drop it, wham. You end up in a cycle of high and low blood sugars and ravenous. Plus, high blood sugars call for extra insulin and insulin stores fat. Eat some carbs, mostly from vegetables and small amounts of fruit, beans and whole grains, and your blood sugar will become more steady.

8. Don’t react too quickly. For decades I dreamed of “Pinkie” my continuous glucose monitor – a tool that would tell me if my blood sugar was going up or down and how fast. But when Pinkie gives me the “up” arrow, all I want to do is stop her. So I take more insulin only to then drop too low. Watch and wait – that 45 or 90 degree arrow often flattens out a minute or two after you see it so nothing needs to be done.

9. Routine is a powerful tool. Doing most things similarly each day – eating relatively at the same time, and the same foods or types of food, doing my exercise at the same time of day – keeps my blood sugar more predictable. When I’m off my routine, usually due to travel, that predictability and my “nice” blood sugar numbers, all but disappear.

10. The “X” factor. Even though I just told you routine makes blood sugars more predictable, there is the “X” factor. You can do the same thing, the same way, the same time, two days in a row and get different results. But it will happen less if you do things routinely.

11. Diabetes IS a second job. With no admin person, travel dept, expense account or colleagues to have a drink or cronut with after a hard day’s work. No matter how long you’ve had this job, you’ll still feel like an idiot some days because many of your guesses will be wrong. Give yourself an occasional vacation – skip a blood sugar check here or there – and definitely reward yourself with a hefty end of year bonus.

Have you learned something that would help someone else they probably wouldn’t hear from their doctor?



I love you, I hate you Toujeo


Toujeo is the new basal insulin from Sanofi. It’s not quite a replacement for Lantus as Sanofi will continue to sell Lantus. But, since a generic of Lantus will be coming on market later this year, it’s a new product for Sanofi that Lantus users might prefer.

My personal interest in switching from Lantus to Toujeo is it’s reported to last up to 36 hours. Lantus doesn’t make it the 24 for me. And it shows less nighttime hypoglycemia. Lantus typically drops me to 55 mg/dl around 5 AM most nights and then my blood sugar starts coming back up. Likely either my liver starts shooting sugar into my bloodstream to save me or the Dawn Effect begins, or both. But then by 6:30 or 7 AM my blood sugar is rising like a runaway train.

I’ve been using Toujeo since June 1, three weeks. From personal use I can also report the button is extremely easy to press. So if you’re a type 2 and take a lot of basal insulin, this will be much more comfortable injecting.

But I am absolutely crazed trying to figure out how much Toujeo I need along with my mealtime Humalog. When I take the same amount of Toujeo as I do Lantus, I seem to run high during the day. When I up the Toujeo by a unit, I drop overnight. And, every HCP will tell you not to change your dose for 3 days as your body has to get used to the change.

It is hair-pulling making this switch which I didn’t think would be difficult at all. I keep wondering how much longer to experiment. Granted, it’s not good to go hypo every night as I do with Lantus, but at least I knew my pattern, and I always came back up. Yes, I know, one day I might not. But now I’m having to figure out the impact of all the variables all over again: food, exercise, alcohol, weather, illness, stress, lag times.

I’m not giving up – yet. I more or less change one thing each day to see if it helps during my three day interval, and I’ve got two Toujeo pens left thanks to the largesse of my CDE friend who gave me samples.

So while improvements are always welcome, they’re not always easy.


Falling in Love with my Father Now That It’s Almost Over


My father began to leave us, mentally, two years ago. We were looking at photos on my mother’s computer when he pointed to his granddaughter on screen and called her his Aunt. My mother, brother, his wife and I looked at each other aware we’d heard the slip, but we colluded not to hear it. Or at least to leave a sliver of doubt.

For the past two years there’s been no doubt. My 92-year-old father has dementia. He speaks less each time I see him, which is about once a month. He can whisper a few words but it’s a great effort.

Last year when I would visit, my mother would coach him, “Your daughter Riva is coming today.” By time I arrived it seemed to stick; he seemed to know who I was. Now little sticks. We spent last weekend together yet he didn’t know who I was until Sunday night. He walked into the kitchen, smiled, and said pointing to my mother, “Your mother making dinner.”

In that moment he identified us both. For he no longer knows my mother either.

Last year he thought she was his sister and worried every night that she wasn’t leaving in time to get home safely. Now he asks me with a lopsided grin, “Who is that?,” shaking his head forlornly. He doesn’t know his wife of sixty-five years who now bathes him, dresses him, cuts his food, ties his shoes. The woman who found him going through the kitchen drawers at 4 AM holding a hammer, pliers and knife looking for more tools; his tooth was bothering him and he was going to fix it. The woman who had to put an alarm on the front door for fear he will open it and walk away. And had to put an alarm around her own neck in case something should happen to her. For then, what will become of him?

It breaks my heart every time I see him. Not because he doesn’t know who I am, I don’t care. But because I am falling in love with the father I grew up hating. And now there is precious little time left to have this love affair. It is starting as it is ending.

My father was diagnosed with clinical depression when he was fifty-five. Until then he was angry, moody, sullen and self-absorbed. He was not the father who takes you to ball games or ice-skating. He was not the father who asks at the dinner table, “How was school?” Or when I came home from Europe, “How was your trip?” He was the father who once home from work sat in the living room, silent, with a book and a drink. He was the father I experienced as emotionally absent and whose depression made him also at times emotionally abusive.

I knew the story of his own childhood. Two of his three brothers both died when they were sixteen years old. One from tuberculosis the other from an accidental fall while climbing a rope in the school gym. My father’s mother never recovered from the loss. So she doted on her youngest child, my Aunt Shirley, the only girl in the family. My father became lost in the shuffle and for years wished he was Shirley.

When my father was put on depression medication it took away the anger. It also took away any emotional vibrancy. The dementia has similarly kept him docile, but added a sweetness I have never known before. Sweet, vulnerable and helpless is a wicked mixture; it will break your heart.

My father spends his time sitting on the couch staring at the TV screen but takes little in. He often looks at me as if to say, ‘Who are you?’, ‘Why are you here?’, ‘What am I meant to do now?” An avid reader his whole life, he picks up a book from the side table, flips the pages, but takes nothing in. He wanders across the living room to the window and stares at a rock or a leaf or a candy wrapper outside. He wants to go and tend it, until my mother calls him back to the couch.

Each time I see him he has lost more ability to speak, hear, comprehend, do. As my physician assistant friend said, “His body is outliving his mind.” Yes, that is exactly so. He no longer understands why my mother calls him to the dinner table, or puts his jacket on him to go outside, or lifts him off the couch to get into the car so they can return me to the train station. But he goes along like a baby lamb following its mother. So that when he looks at me and smiles, trusting me for no reason, my heart breaks. These days all I want to do is stroke his cheek, take his hand or put mine over his heart.

It is cruel that God has made me fall in love with my father after sixty-one years. When I use to think about his passing, I thought I would miss him from time to time but no big deal. Now I am already devastated.

Getting out of the car at the train station I reach into the front seat. I take his hand and say, “I love you.” He turns as best he can, looks at me and says, “I love you.” My mother startled says, “Did he just say I love you?” He says it again, “I love you.” I get out of the car, reach into the front window where he is sitting, put my hand over his heart and he says it a third time, “I love you.”

I don’t expect you’ll be here dad next year for Father’s Day. But I’ll tell you again this Sunday, “I love you.” And now I know I always will.

 Riva with her Father in the rain

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Why It’s Not Your Fault You’re Struggling With Your Diabetes

You decide as you roll over and pull yourself out of bed that today will be different. Today you’ll stick to your diet, eat only healthy foods, start that walking program and remember to take all your pills or shots. Like clockwork.

By mid-afternoon, if not mid-morning, today becomes like every other day. Good intentions were only that. But it’s not entirely your fault.

As a culture we worship personal responsibility. But as a society we create hurdles at every turn when it comes to health. Being a learned patient about health, diabetes, nutrition and fitness, I’m poised every day to make healthy choices. Then I fly from London to New York.

On my recent Virgin Atlantic flight my dinner was appalling. A sad looking piece of chicken, reconstituted rice, a small salad with Orzo for extra carb, a gummy white roll and dessert. No greens, no fruit, no nutrition.

Ice cream came four hours later, and this snack box before landing. There is no food in these wrappers.

Why It's Not Your Fault You're Struggling With Your Diabetes

Photo courtesy of Riva Greenberg

The Virgin Atlantic website says, “We get all the details just right.” They do if their measure is feeding people cheap, food-like substances to maximize shareholder profit.

Admittedly, personal responsibility would have had me bring my own meal onboard, which I often do. I had forgotten when flying international the food has become as pitiful as when flying domestic. Of course, finding a healthy meal at an airport would not have been easy.

Our government says it wants everyone to be healthy so we now have expanded healthcare accessibility. Yet all that ensures is as people grow sicker, more will have access to a doctor.

If the government supported health, it would farm out its farm subsidies differently. Rather than support the overproduction of corn — that gets turned into inflammatory high fructose corn syrup and used as cheap sweetener in almost everything we eat — it would subsidize farmers who grow vegetables and fruit.

There is a reason why every other TV ad today is for a diabetes drug. And it’s not that people aren’t trying. It’s that personal responsibility will only succeed where there is societal support.

Unfortunately there was another big whack at my taking personal responsibility waiting for me at home. I had received a letter from my health insurance company denying my doctor’s request for a new insulin. Toujeo, a new basal insulin recently on the market, lasts longer (5.2) than its predecessors Lantus and Levemir. This would flatten my morning blood sugar rise and reduce my chance for complications.

I felt betrayed. I pay for health insurance and am an informed patient doing my best. Yet my request for a medicine that can improve my management and quality of life was denied. Why? Shareholder profits — the insulin that would give me better blood sugars is not on their formulary.

Next time someone makes a thoughtless comment like, “Why can’t you control your diabetes? What’s the big deal?!” I want you to know it is a big deal. There is little support out here. You’re not necessarily struggling because of a lack of responsibility.

The weak link in personal responsibility are the many blockades society has erected. For a disease that requires food adherence, healthy food is often unavailable or unaffordable. We need to be active yet streets are not made for walking or bicycling.

Improved medicines are withheld by the insurance companies meant to safeguard our health. Medicare does not cover the cost of continuous glucose monitors for seniors, the very population prone to low blood sugar.

Diabetes care has always stressed “self-management.” But self-management can only be successful for the many when people take personal responsibility and those who govern us support it.

Originally published in The Huffington Post.


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:


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.


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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