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

Dr. Mark Hyman’s Fat Summit Findings

Dr. Mark Hyman's Fat Summit

Those who follow me on Facebook saw me litter my page this week with a bunch of screen shots from Dr. Mark Hyman’s “The Fat Summit.”

I’ll say right now, contrary to what you probably think based on the photo above, we are not getting fat from eating fat.

Dr. Hyman, best-selling author of health and nutrition books, particularly around carbs, fat and blood sugar, director of the Cleveland Clinic Center for Functional Medicine, and HuffPost contributor, interviewed more than 30 nutrition experts on the effects of different types of fat, and carbohydrates, on our body.

His expert panel included top people in the medical, scientific and lifestyle sciences. Just to name a few: Deepak Chopra, MD, Chris Kressler, MS, Aseem Malotra, MD, David Ludwig, MD, PhD, Walter Willett, MD, Christiane Northrup, MD, Michael Roizen, MD, Neal Barnard, MD, Barry Sears PhD and Gary Taubes and Nina Teicholz investigative nutrition journalists.

Hyman, and most of his experts, advocate a diet high in healthy fat — nuts, seeds, olive and coconut oil, avocado, eggs, full fat dairy and some meat. And no refined carbohydrates. I should say right now that’s my own personal bias, as well and how I eat.

Most of his experts validate it’s not a matter of calories in, calories out we’ve always heard or eat less, move more. It is the quality of those calories and how your body uses them.

Interestingly, the very friendly and charismatic Hyman, talked frequently about how contradictory the information is coming at Americans about nutrition and how difficult it is for the average person to know what’s right and what’s wrong. No doubt. So I found it funny that even among his guests, not all agreed with each other.

Very briefly: All agree healthy fat is better than bad fat. Healthy fat is better than refined carbohydrates. The disagreement is whether we should really eat a lot of healthy fat, like neurologist Dr. David Perlmutter, who pours olive oil on his morning eggs. Or should we severely limit healthy fat too like Drs. Dean Ornish and Joel Fuhrman who think the benefit doesn’t outweigh the calories consumed. Yes, pun.

For me, having diabetes, eating a diet plentiful with healthy fat and low in refined carbs is a no-brainer. Carbs raise blood sugar. Refined carbs spike blood sugar. Higher blood sugar requires more insulin. Insulin is a fat storage hormone. The more of it circulating in your blood stream, the more it’s causing calories to be stored — in the liver as fat.

Voila, you gain weight, mostly putting it around your belly, and you end up with fatty liver disease to boot. By the way, most people with Type 2 diabetes also have fatty liver disease and don’t know it.

Dr. Hyman is also popularizing the notion that goes a step beyond “food is medicine” to “food is information.” Food tells your body how to act, respond, behave; it guides your metabolic response, tells your body what hormones to stimulate and influences what genes get turned on. That’s why a more nutritious diet decreases the risk of all dis-eases.

Here are some take-aways his experts shared:

  • The way your body metabolizes fat and refined carbs, it’s the carbs that cause weight gain
  • Eat mostly plant foods and nutrient dense foods. Don’t eat processed foods.
  • Food can be more powerful at lowering blood pressure than medication
  • If you want to lower your A1C eat more fat and less carbs
  • When the brain burns fat as fuel instead of carbohydrates it does so more efficiently and without creating as many free radicals
  • Saturated fat is not the devil. Most saturated fat in our body is actually made from carbohydrates.
  • Insulin keeps fat locked in our fat cells, preventing it from getting burned or used. Eating fat does just the opposite.
  • Obesity kills more people than smoking and alcoholism and being sedentary combined
  • Soda consumption is the number one contribution to obesity in America
  • Most of our cows today eat corn, which they aren’t designed to eat but corn fattens them quickly inflaming their fat cells. Eating them fattens us and contributes to our body’s inflammation.
  • The food industry gives an enormous amount of money each year to politicians
  • Procter & Gamble has long been a major funder of the American Heart Association. You do the math.
  • Media no longer has time to do investigative research on food plus their news outlets are usually owned by corporations that have an agenda

One thing not to forget has become a catch phrase in diabetes, “Your diabetes may vary.” As Hyman stressed, we are all individuals. Different things may work better for different individuals. So whether you should eat a lot of healthy fat, moderate amounts or very little, may differ for you. The best way to know is to try the variations on yourself.

For me eating a liberal amount of healthy fat — nuts, seeds, tahini, avocado, coconut and olive oil, eggs and some cheese and Greek yogurt, and grilled chicken and fish with occasional red meat, tons of vegetables and little to no refined carb — works extremely well in keeping my weight down and my blood sugar from spiking. I haven’t counted a calorie for a decade. And I feel good.

Of course we also don’t live in a food vacuum. I walk an hour most days, drink wine with dinner most nights, drink a lot of water and no sugary beverages and have the genes I was born with.

I don’t think there’s any easy answer to this nutritional debate. But I do think we’re lucky more information is coming out that we can all access.

So take the daily contradictory news headlines about food and what the government says and ads say, even I hate to say it but must, what the behind-the-curve organizations like the Heart Association and the American Diabetes Association say, with a grain — or a plantation full — of salt.

People can always make studies and statistics say what they want them to say and food lobbyists are a powerful force.

How can we dismiss that forty plus years or so ago, when we were all pushed to stop eating fat and eat more carbs, Americans got fatter than ever?

Originally published in The Huffington Post.

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Why Are We Ignoring Diabetes Education?

Diabetes is a self-managed condition. That means the person with diabetes must take care of it each and every day — and know how to do so.

There’s an infinite amount of things they must know including how foods impact blood sugar, blood pressure and kidney health. The benefits of exercise and when it’s dangerous to exercise. The importance of taking your medicine, or not. What the blood sugar numbers on their glucose meter mean and what to do with that information. How to prevent and recover from devastating low blood sugar and prevent frequent high blood sugars.

Knowing how to manage one’s diabetes can be the difference between living a fairly normal life or suffering from debilitating diabetes complications.

Complications can be devastating for both the person with diabetes and his or her family. They include losing your vision, having your foot or leg amputated, feeling constant pain, tingling or absolutely nothing in your feet and dying prematurely from heart disease, as two out of three people do with type 2 diabetes.

Nearly 400 million people in the world have diabetes and half don’t know it. 86 million people in the U.S. have prediabetes, 7 million more than a few years ago. Every 6 seconds a person dies from diabetes.

Since this education, called diabetes self-management education (DSME), is essential to one’s quality of life with diabetes, why isn’t it one of the first things healthcare providers make sure patients get? A study reveals that only an estimated 6.8 percent of people with newly diagnosed type 2 diabetes received DSME during their first year with diabetes.

What’s even more dismaying is that the study participants had private health coverage that would cover the cost of their initial self-management education.

Equally hard to believe is the disclosure at last year’s American Diabetes Association (ADA) conference. Many providers don’t even know what diabetes educators — health care professionals specifically trained to provide this education — do!

The final fact that leaves my head spinning is we know that diabetes education reduces hospital visits, re-admissions, complications — and costs.

To better understand the state of, and hopes for, diabetes self-management education, I spoke to two passionate, concerned and driven women — the 2015 President of the American Association of Diabetes Educators (AADE), Deborah Greenwood, PhD, RN, BC-ADM, CDE and the 2016 President Hope Warshaw, MMSc, RD, CDE, BC-ADM.

Riva Greenberg: Where are we today in recognizing the value of diabetes self-management education and what’s being done to make it more available?

2016-01-06-1452120441-8357567-ScreenShot20160106at5.46.12PM.pngDeborah Greenwood: “A very positive and significant trend I’ve been seeing is an emphasis on diabetes prevention and wellness. As you know many millions of people in the U.S have prediabetes so we must increase awareness, provide education, preventive care and behavior change support to reduce the progression of the disease.

Also, many new technology-enabled models of care including telehealth, mobile health, and mobile prescription therapy are helping us provide DSME to more underserved and remote populations.

RG: What do you see as the primary goal for the AADE this year?

DG: As a professional member organization, the AADE works to encourage diabetes educators into the field, advocate for educators by regularly communicating with the primary care provider community and support legislation for reimbursement of diabetes education.

As an example of AADE’s influence, Medicare reimburses for DSME within an ADA recognized or AADE accredited program. But this does not recognize diabetes educators as qualified providers of DSME. Right now we’re advocating a bill in Congress to include diabetes educators as providers as well as increase DSME access.

I’m also very excited about the AADE’s new 2016-2018 strategic plan. The AADE board of directors has drafted a visionary plan to shape the future of the diabetes educator profession, while ensuring that people affected by diabetes are at the center of all we do.

What we need now, to secure diabetes self-management education for the tens of millions of people with diabetes, is to help those who run hospitals, insurance companies and clinics see that DSME not only improves people’s health but will also benefit them with significant cost savings.”

RG: What do you think of the low incidence of people being referred to diabetes educators?

2016-01-06-1452120736-1958989-sshope.pngHope Warshaw: “The 6.8 percent statistic, a case in point from one study, is evidence that most people with type 2 diabetes, most of whom see a primary care provider, are not getting referred for diabetes self-management education. Even though for many people with a private health plan or Medicare Part B this is a covered benefit.

As my colleague, Marti Funnell, RN, CDE, said, 6.8 percent is a good A1C level, but it’s unacceptable as a percent for people who receive diabetes education.

Unfortunately, there continues to be limited understanding among providers of the critical junctures in one’s life with diabetes when they should be referred for DSME.

At the 2015 American Diabetes Association conference, a joint statement was presented by the American Diabetes Association, the AADE and the Academy of Nutrition and Dietetics to stress the four junctures when people should be referred for DSME. At diagnosis, annually, when complications arise and when transitions occur in care.

RG: How will the profession keep up with the millions more people getting diabetes each year?

HW: We undoubtedly need to attract new healthcare providers to the profession of diabetes education and AADE. This is part of our new strategic plan efforts, to further develop this specialty in academic institutions.

In addition, diabetes educators are helping to train and support individuals who can be considered diabetes paraprofessionals, such as community health workers, peer supporters and promotoras. These are lay people in the Hispanic/Latino community who receive specialized training to provide basic diabetes education and even more importantly, support.

I also believe people with diabetes can make excellent peer supporters. If anyone is interested, I’d urge them to talk with their diabetes educator or other educators they know to see how they can help extend the services of diabetes educators.

I would also encourage every diabetes educator and person with diabetes to go online, see what’s happening and get involved with the Diabetes Online Community (DOC). We have a resource page that can serve as a starter to learn, connect and engage with the DOC.

This is an amazing group of people, like yourself, who have diabetes and are sharing their knowledge and experiences and supporting others. For diabetes educators there’s rich insight here into the experiences of people with diabetes and their caregivers.

RG: What can we be hopeful about for people who live with diabetes and need education?

HW: That through blogs like this one more people will know about and get referred by their provider for DSME.

AADE’s new strategic plan that Deborah mentioned, studied the landscape in which diabetes educators work. We considered the myriad of changes occurring in our rapidly changing healthcare environment, including device and communication technologies, increased awareness of the psychosocial aspects of diabetes and other factors.

It positions AADE to help diabetes educators better meet the current demand, the demands of the millions of people being diagnosed with diabetes and the aging population of people with diabetes.

Bottom line, as Deborah said, the entities that pay for the delivery of healthcare must recognize the cost savings of DSME. And that diabetes education is not just what takes place when a patient sees an educator for a prescribed visit.

Diabetes educators work in the inpatient areas of hospitals on glycemic control protocols, transitioning people back to their insulin pump after surgery, getting people started on insulin, decreasing hospital readmissions, ensuring patient safety and much more.

We work in food banks, in Federally Qualified Health Centers and in supermarkets and pharmacies delivering education. We provide telehealth services, provide type 2 diabetes prevention programs, operate our own private practices, work for device companies. I could go on and on.

And, yes, we are working as hard as we can to get that message out to ensure that diabetes educators are utilized and respected and that more and more people will have the education they need to live long and healthy lives with diabetes.”

I believe diabetes educators are one of the most important, and undervalued, professionals in our healthcare system. I am constantly meeting new educators through my work and my peer-mentoring, and have the utmost respect for them and the hurdles they’re up against.

It’s time to ensure that these professionals are recognized and utilized. And that every person with diabetes gets the self-management training essential to live a healthy, full and productive life with diabetes.

Photo use granted by the American Association of Diabetes Educators.

Originally published in The Huffington Post.

 

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Diabetes New Year’s Resolutions, Nah!

Indiabeticshead

Cartoons by Haidee Soule Merritt. Used with permission.

I don’t make New Year’s resolutions. Let’s be frank, where in my brain would there be room for them? From the second I open my eyes to the moment I close them, my head is full of diabetes tasks and calculations.

First I roll out of bed and lumber into the kitchen. I pull out my glucose meter. Pop open vial. Place test strip in meter. Lance my finger. Line up blood perfectly so strip can suck it up. Wait… to see whether I’m going to be happy or pissed off at myself.

If I made a New Year’s resolution to lose weight, as most people do, when would I have time to count calories? I’m already donating heaps of mindshare to counting carbohydrates. And that’s just one food group.

When could I read the latest articles on Facebook — 5 foods I must eat to lose 10 pounds and what 5 foods will sabotage my efforts. I suppose if I worked really, really hard I could slip some reading in after I find my misplaced continuous glucose monitor (CGM) receiver. Or instead of googling when faster insulins are coming. But that two hour check after a meal is such a let down.

And while I walk 20 blocks to the farmer’s market for fresh, whole foods, what is this new vegetable — a mix between broccoli and cauliflower? I now have to figure out if it will be as kind to my blood sugar as its parents. And what do I call it — Broccoflower? Romanesco broccoli? Roman cauliflower? Broccolo Romanesco? All this takes time away from checking the vegetable bin in my fridge to see if I have enough insulin for the next two months or need a new script.

Another popular resolution is to get organized. Hmmm… already aced it! I’ve got a dedicated drawer in my kitchen for my every day diabetes supplies. A mug on my kitchen counter for my insulin pen. A plate next to the mug for pen needles and lancets.

My glucose meter is always in front of my toaster oven. Yes, a stupid place. I have to move it whenever my husband makes a piece of toast. But if you’ve been in a New York City kitchen you understand space comes at a premium.

There are five boxes of lancets, syringes, adhesive tape, test strips, cables and instruction booklets on the top shelf of my pantry closet fighting with a 32-ounce bag of quinoa. Each diabetes box is precisely marked for contents.

There’s a box of dedicated supplies for my CGM in my bedroom closet between a shoe bag and a twenty-five year old briefcase. What that’s doing there I have no idea! And there are two utility size plastic bags of glucose tablets below. Raspberry, my favorite flavor. They were a gift.

The last resolution I could possibly even think about is exercise. But strength training and powerlifting raise your blood sugar. Really? I’m going to burden myself with exercise only to pay for it with higher blood sugar? I don’t think so.

If you don’t have diabetes you may not be aware that when you speak to someone who does, they’re not listening to you. How could they? Their mind’s chattering incessantly, “When did I last eat?” “When am I eating next?” “What will I eat?” “How many units of insulin will I need for that?” “Will I walk home after?” “Should I take the bus?” “Gotta factor that in before I dose for dinner.” Oops, sorry, that’s my mind.

Truth is I think resolutions are a set up for failure. I believe whatever you want to do, you’ll do.

A few years ago in lieu of resolutions I chose to remind myself throughout the year to “Be bold.” The next year I chose to remind myself to “Be bolder.” Maybe it helped, I’m not sure.

But one thing I do work at is being kind. As an everyday practice. To myself and to others.

Inside nondiabetics head

So while you’re wondering what the weather is, remember your mate is thinking, darn, now it’s not going to rain?! Do I have to take another injection? If I walk should I finish those left over bites of muffin? What if it rains while I’m walking and I have to come back early? I’ll need another shot again. Better check my blood sugar again. But it looks like it might…

Originally published in The Huffington Post.

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Follow Zoe Run Her 3rd Marathon With Type 1 Diabetes

 Zoe Heineman - with Marathon Medals

Photo credit Alexander Khalap

Nov. 1 Zoe Heineman is running her third NYC marathon. You can track Zoe during the race by downloading this app. Her bib is #47936.

Zoe’s biggest challenge will not be the endurance required, but keeping her blood sugar from dropping dangerously low.

As a fellow Type 1 questions flood my mind: What’s it like to run 26 miles when you take insulin? How do you prepare? How do you minimize the risks? What do you carry?

Zoe and hypoglycemia (low blood sugar) are intimately linked. She’s turned her passion to educate people about low blood sugar into Ha! It stands for Hypoglycemia Awareness.

Often diseases are represented by celebrities and professional athletes. I find it refreshing when we get to see someone like ourselves doing the remarkable. I talked to Zoe about the upcoming marathon and why there’s almost a “conspiracy of silence” around hypoglycemia.

RG: What inspired you to run a marathon?

ZH: Running the NYC marathon had always been on my bucket list. When I was approached by a charity for challenged athletes, I decided it was time. I made a deal with myself. If I got injured during training I would stop.

I started running one mile, then another. I worked up and up. When I got to 22 miles I hit a psychological wall. I knew I could run the marathon. But what if I got hypoglycemia while running? Either 50,000 people would stampede over me, or I’d ruin the race for the guy right behind me. Or both!

That’s when I discovered the organization Achilles. They offer guides to run with anyone who has a medical or psychological condition. I ran my first marathon with three guides. They were my peace of mind, and they helped carry some of my diabetes supplies!

Zoe Running

Running with Zoe are Achilles guides Yuki Kaneshige and Michele Doctor. Photo credit Larry Sillen.

RG: What do you carry during the marathon?

ZH: Callus protectors, balm, heat wraps to keep my hands warm, a glucagon emergency kit, back up meter and strips, gels, skittles, seasonal candy corn and glucose tablets. I wear my Dexcom CGM and carry the receiver, wear my Tandem insulin pump and carry extra pump supplies. Before you ask, I wear pants with deep pockets, a shirt with pockets and a fanny pack.

RG: I won’t insult you asking how you “control” your blood sugar… but how do you minimize the chances that your blood sugar will go too high and too low?

ZH: Ha, thanks! Despite my best efforts on an ordinary day, thinking about and managing my blood sugar constantly, it’s a moving target. I try to start the marathon with my blood sugar around 150 mg/dl (8.3 mmol/l) and stay between 80 mg/dl (4.4 mmol/l) and 150 throughout. If I hit 80, I eat some skittles or glucose bits to bump my blood sugar up. If it gets below 70 mg/dl (3.8 mmol/l) I’ll start on gel and just keep running. It works best if I take a gel, which has 15 grams of carbohydrate, every two miles.

When I was diagnosed my endo said the only way I could exercise was if I did it every day, the same time, the same amount, or don’t do it. The idea was to make my exercise match the amount of insulin I took rather than adjust my insulin. That’s crazy! But it’s just as crazy to be on insulin and not be prepared or know what to do if your blood sugar goes too low.

RG: That brings us to the educational resource you launched, Ha!

ZH: Since my diagnosis I’ve been a diabetes activist. I grew up in Maryland where health insurance didn’t cover test strips and syringes so I was part of the group that lobbied for that. Soon after I got diabetes, I left my job as a school teacher and began working in the diabetes industry.

One of my consulting projects was with Biodel, a developer of stable glucagonand ultra-fast acting insulin. We were looking at why people don’t use or carry glucagon, the only remedy for severe hypoglycemia. And the costs of severe hypoglycemia. There’s no easier risk to mitigate than having people with diabetes be prepared for hypoglycemia. To do that, we need to educate people with diabetes about hypoglycemia and train first responders.

I started Ha! to help someone having hypoglycemia in a public space. First responders like lifeguards, teachers, flight attendants, and police officers aren’t taught anything about hypoglycemia. They need to know if someone’s blood sugar is too low, they need glucose not insulin. They need a Coke, not a diet Coke. They’re not drunk, they just need sugar. The brain starts to shut down quickly when it doesn’t have adequate glucose.

Severe hypoglycemia has high costs. People with Type 1 diabetes die unnecessarily from hypoglycemia. People with Type 2 diabetes who use insulin also experience severe hypoglycemia and its consequences. The average cost of an inpatient hospital visit due to hypoglycemia is $17,564. Plus, severe hypoglycemia impacts others. You can have a car crash while you’re low and hurt someone else.

Zoe - Supplies

Photo credit Riva Greenberg

Ha! is running a social media campaign, “Show Me Your G” (“G” stands for glucose). The campaign encourages people taking insulin to pin a magenta “G” icon on your bag where you keep your glucose supplies. This makes it easier for others to help if you go low. If you take insulin, or know someone who does, you can purchase a magenta “G” pin on Ebay for only $5. Ha! also offers endocrinologists a mentoring program called Diabuddies. They can pair a new diabetes patient with an old hand.

RG: Does Ha! have corporate sponsorship?

ZH: Not yet. I’ve approached corporations that I feel should have a vested interest in teaching people about hypoglycemia, like Lilly and Novo Nordisk. They both make insulin and glucagon. But they aren’t there yet. I think they don’t want to draw attention to the risk of using insulin.

It’s remarkable, but even physicians don’t teach their patients about hypoglycemia and glucagon. Glucagon is enormously underutilized. Most people who get a script for it are kids. It’s their parents who want them to have it. Adults say they don’t carry glucagon because who will be there to give it to them, no one knows how to use it, and it’s cumbersome to carry.

RG: Have you ever had a severe hypoglycemic event?

ZH: I’ve had three. One put me in the hospital in Sweden. I was working at a vendor booth at the EASD (European Association for the Study of Diabetes) meeting in Stockholm when I started feeling symptomatic. I was the only person in the booth. For a while all the activity around me distracted me. Finally I realized I needed to go get sugar.

I walked out of the booth, out of the exhibition hall, and to a little convenience store in the convention center. I got a banana and apple juice and got on line. When I reached the clerk I said, “I have diabetes and I’m about to pass out.”

The next thing I knew I woke up in an ambulance on my way to the hospital. What’s remarkable is my instinct was to go buy apple juice and a banana rather than just get the glucose tablets out of my purse. The hypoglycemia had kidnapped my brain. My common sense was no longer there. And that’s precisely why people need to know how to help themselves or someone else who’s having severe low blood sugar.

If you want to sponsor Zoe, donations go to Achilles International, click here. Zoe’s currently working on a book to share people’s stories of hypoglycemia and lessons learned and you’ll find her diabetes blog here.

I know November 1st I’ll be praying for good weather.

Originally published in The Huffington Post.

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My favorite hotel food, a pancake

My favorite hotel food, a pancake

I’ve just read over a number of my recent blog posts and realize how heavy they’ve become on food. Without realizing, healthy eating and how to achieve that, have become consuming passions. Now you ask, “So how can pancakes be your favorite hotel food?”

Well, I am human after all. I travel a lot speaking at conferences, speaking as a peer-mentor with the A1c Champions program and having a Dutch husband. That means I’m often lodging in hotels. My favorite breakfast at a hotel is not the all-you-can-eat buffet. I know I’d eat more than I should and I’m not interested in most of what’s on offer – the breads, muffins, cold breakfast cereals…Nope, I want two freshly scrambled eggs and one pancake.

If I could I’d wave a magic wand and make it a buckwheat pancake, trust me I would. But hotels have not gotten this far on the healthy breakfast spectrum. So buttermilk fills the bill.

I order my meal as two sides: Two eggs and one pancake. And most of the time after the strange look from the server, he or she becomes very accommodating. And I’m very specific, “One pancake please, no sugar, no syrup, no butter, no fruit.” When it comes I remove the orange slice and parsley garnish, which always seems to be there, and sprinkle my pancake with a little salt. A bite of sweet, dense and chewy pancake with the warm egg is quite delicious. Really, try it. Then, if the gods are smiling, I have time to head to the hotel gym and bring down the outrageous blood sugar rise one pancake causes.

Surfing this morning on pancakes, this recipe looks great if you’re making them at home – no flour, but almond meal and flax seed. If I actually cooked pancakes at home, I’d be sure to try it. Somehow I just like to keep my pancake confined to hotels.

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JDRF and the American Diabetes Association announce new staging for Type 1 Diabetes

The news was announced today about a new classification approach for the development of type 1 diabetes (T1D). Three distinct stages will mark the development of the disease – from its earliest pre symptomatic stages to full blown onset. The aim of staging is to help preserve more insulin-producing beta cell function and make further strides toward prevention.

JDRF and the American Diabetes Association, with several leading diabetes research and clinical organizations, collaborated on the development of the staging approach. The American Association of Clinical Endocrinologists, the International Society for Pediatric and Adolescent Diabetes and The Leona M. and Harry B. Charitable Trust have already endorsed it.

“We know type 1 diabetes begins long before insulin dependence occurs, and the best time to halt the disease’s progress is before the loss of insulin-producing pancreatic beta cells,” said JDRF’s Chief Scientific Officer, Richard Insel, M.D. “Decades of research in at-risk individuals have provided the foundation for developing this new three-stage diagnostic approach, which we believe will help optimize the design of clinical trials to prevent symptomatic disease and more quickly evaluate interventions.”

Desmond Schatz, M.D., president-elect, medicine and science at American Diabetes Association explained, “Type 1 diabetes is diagnosed relatively late in the disease process.” Now pre-type 1 diabetes can be identified both in higher risk relatives and the lower risk general population by using a combination of genetic, immunologic and metabolic markers and categorization of the natural history of the early disease process which is now possible.” According to Schatz this will facilitate prevention studies at different stages of the disease process.

Personally, I always keep hearing as well that figuring out how to prevent type 1 diabetes may be necessary before we find a cure.

Regarding staging, two years ago I wrote on The Huffington Post that we should characterize type 2 diabetes in stages – “The Lie That’s Killing Us: Pre-Diabetes.” Diagnosing people with “pre-diabetes” doesn’t inspire the action that calling it stage 1 of type 2 diabetes likely would. Many of the current 80 million people with “pre-diabetes” will go on to get type 2 diabetes. Yet, if they heard that they had stage 1 type 2 diabetes they might well make the lifestyle changes – eating a healthier diet, losing weight, being active and possibly medication – that might prevent it. I’m still in favor of this.

For myself as a type 1, I remember how surprised I was years ago when endocrinologist Gerald Bernstein, who ran the Friedman Diabetes Center in Manhattan, told me that while I got type 1 diabetes at age eighteen, I probably began developing it when I was twelve. And I have a theory why that might be so.

We talk about type 1 diabetes coming on like a bullet train but apparently there’s a slow escalation and now researchers are able to see distinct metabolic markers of the disease’s progression. Marking the stages of the disease will help facilitate prevention studies, and hopefully one day, prevention – and a cure.

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The Invisibility of Type 1 Diabetes

The Invisibility of Type 1 DiabetesLiving with Type 1 diabetes is neither a fire walk nor a piece of cake. Pardon the pun. But often it feels like a fire walk. Every day and night watching your blood sugar to keep it in a safe place. Calculating and guessing all day long how everything you do will affect your immediate and long-term survival.

Everyone seems to think these calculations are effortless. You do it every day. You’ve done it a million times. But it’s not effortless. You start all over every day. Always guessing.

I’ve had Type 1 diabetes for 43 years. I turned sixty two last week. I’ve lived with diabetes two-thirds of my life. I don’t know what it’s like to have a day I don’t stick a needle into my finger six to ten times to check my blood sugar. A day I don’t stick a syringe into my body four to six times that’s filled with insulin. Too little, too much, both have consequences.

I don’t know what it’s like to eat without calculating how many carbohydrates I’m eating. Sometimes wondering should I eat one more bite or less for the shot I took. Lately I tried joining my husband for a walk after dinner. It made my blood sugar plummet. The only way to make it rise, so I don’t die of low blood sugar overnight, is to eat. I truly hate that.

I don’t know what it’s like to do things on the spur of the moment. There is so much to consider when you have Type 1 diabetes.

This isn’t meant to be a poor me story. There are millions of people who live with far worse illnesses than I do. And, in truth, there is much diabetes has given me: strength, pride, the motivation to maintain a normal weight, purposeful work, great friends, esteemed colleagues and international travel.

This is about the feeling that Type 1 diabetes demands so much work to stay alive – and no one notices. The constant checking, testing, guessing, calculating, preventing, recovering from your blood sugar just to get safely through the day. The being at risk of dying at any moment from severe low blood sugar or too soon from diabetes related complications. And no one notices.

The Invisibility of Type 1 Diabetes

Recently I was in London with my husband. We had flown over for a wedding. We sat in the living room of my husband’s good friends. I told them a story I had never shared that happened in their house.

It was twelve years ago. My husband and I were staying in their home on a visit. I woke at 2 AM. I was somewhat disoriented from jet lag, unfamiliar surroundings and low blood sugar.

I snuck out of bed not to wake my husband, who was sleep deprived, or our hosts, whom I didn’t know well. I walked down the hall clinging to the walls until I reached the bathroom. I turned on the light, gripped the sides of the sink and looked at my face in the mirror.

I wondered why I was there, in the bathroom, and what was I doing. Feeling weak I lay down on the black and white tile floor thinking this can’t be right. My lying here. Through the cotton fuzz of my mind it came flooding in: I have low blood sugar. I need sugar.

I got up and clumsily walked back to the bedroom. I took my glucose tablets and meter off the bedside table and went back to the bathroom. I sat on the floor, ate a few tablets, and with trembling hands checked my blood sugar. 29 mg/dl. The lowest it’s ever been. After twenty minutes, feeling more normal, having eaten more tablets, I walked back to the bedroom and crept into bed.

I told my husband the next morning what had happened. He said, “You always wake me if that happens!” But I’d never told his friends we were now having tea with.

They’ve known me a decade and know I have Type 1 diabetes. Yet they don’t really know. As most people don’t really know. Hearing this story they realized how little they did know and what my husband bears living with me every day.

The telling of the story didn’t change anything, and it did. Now two more people know that living with Type 1 diabetes is not simple or easy. That every day we do an immense amount of work just to function. Just to stay alive.

And, oddly, part of the strain is that no one notices. We are invisible.

Riva GreenbergI want more people to know what having Type 1 diabetes is. For the millions of adults like me. The infants, toddlers and teens. The grieving, exhausted parents.

If you know someone with Type 1 diabetes, find out about it. And even if they don’t say, know they often feel invisible.

We work hard not to burden others with looking at us. But trust me sometimes just noticing helps.

Originally published in The Huffington Post.

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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?

 

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