D•blog

The little (blue circle) symbol     that's trying hard to be heard

IDF's symbol to unite diabetes

Here you'll find things to improve your diabetes management: motivational tips, recent research, my observations and reflections, good books etc. Also:

1. Check out my books: 

Diabetes Do's & How-To's 

50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It 

The ABCs of Loving Yourself with Diabetes                                                                                                  

2. Read me on the Huffington Post 

3. Always continue to learn and laugh

OrganizedWisdom cites this blog among top 5 patient-experts and SharecareNow cites me as # 6 among top ten online influencers in diabetes. 

Labor Day means changing my lancet


riva 2 1:2

T’was the night before Labor Day

when I decided to change my lancet

How long had it been…

Hmmm, maybe since last I was in transit?

 

My used syringes cooed all snug in their drawer

Smug were they feeling and absolutely sure           

that I wouldn’t come looking to change them too

for they knew my outer thighs had to first turn black and blue

 

I fumbled around mostly in my brain

Where in heck are those needles I’d seen when last it rained?

Surely I had some, maybe on this shelf maybe that?

Think, you must think, but only gobbledegook was coming back!

 

My husband approached while I searched, and then forgot

just what I was looking for -b-boom, b-boom - ever-quicker beat my heart!

Then the sweat started pouring down my face onto my chin

My husband panicked yelled, “Forget needles, you need sugar. I’ll bring!”

 

“No, I need a needle I insisted to thread my lancet

Who needs sugar? Hey, honey, you look so handsome!”

A moment later a jar of honey and a giant spoon

reached up to my mouth, likely not a moment too soon

 

I hate to admit it, when I fall down on the job

Sixty-one I’ll be tomorrow and still it’s just so hard

Because every day is different and we can only ever guess

How many carbs? Too much insulin? One minute “nailed it!” the next distressed

 

It’s the nature of the this life to be thankful and frustrated

Another crises over, those pesky lancets finally located

Hmmm…I wonder when this vial of insulin needs to be replaced

A week, maybe three, oh, my, could it actually be today?

 

Diabetes resources and A1C Champion program information


Bangor, Maine 1JPG

More and more patients living well with diabetes are teaching and supporting other patients by sharing their wealth of knowledge and experiences. 

Here are lists of trusted diabetes web sites, social media sites, blogs, books and information about the A1C Champions peer-mentor program I participate in.

If you are interested in a free A1C Champion program for your patients, or becoming an A1C Champion peer-mentor yourself, the contact information is below under “The A1C Champion Program.” 

Recommended Diabetes Websites  (in alphabetical order)

American Diabetes Association (diabetes.org)

ASweetLife.org

BehavioralDiabetesInstitute.org

ChildrenwithDiabetes.com

DiabetesMine.com

Diatribe.org

dLife.com

Fit4D.com

Insulindependence.org

JDRF.org

Joslin.org

MayoClinic.com

Mendosa.com

QuantiaMD.com

WebMD.com

Social Communities

#DSMA (Weekly twitter chats)

DiabetesSisters.org (female-specific)

DiabeticConnect.com

DiabetesDaily.com

EstuDiabetes (Spanish)

MyGlu.org (Type 1 diabetes-specific)

Juvenation.org (Type 1 diabetes-specific)

PatientsLikeMe.com (Various disease states)

TypeOneNation.org (Type 1 diabetes-specific)

TuDiabetes.org

A list of those in the infamous Diabetes Online Community http://diabetesadvocates.org/getting-to-know-the-diabetes-online-community-doc-2/ 

Blogs, communities and more. The most exhaustive list I’ve seen. http://www.diabetesmine.com/blogroll

Several books written by people with diabetes

Balancing Diabetes – by Kerri Sparling

Diabetes Do's & How-To's, 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 - by Riva Greenberg

Emotional Eating with DiabetesYour Diabetes Science ExperimentBalancing Diabetes – by Ginger Vieira

Kids First, Diabetes Second - by Leighann Calentine

My Sweet Life: Successful Women with Diabetes and My Sweet Life: Successful Men with Diabetes – by Beverly Adler

Raising Teens with Type 1 - by Moira McCarthy Standford

SHOT – by Amy Ryan

The Book of Better: Life with Diabetes Can’t Be Perfect. Make it Better – by Chuck Eichten

The First Year: Type 2 Diabetes: An Essential Guide for the Newly Diagnosed and Prediabetes: What You Need to Know to Keep Diabetes Away - by Gretchen Becker

The Sisterhood of Diabetes – by Judith Jones Ambrosini

The Smart Woman’s Guide to Diabetes – by Amy Mercer

TypeCast: Amazing people overcoming the chronic disease of type 1 diabetes - by Andrew Deutscher

And now for some books written by patients who are also medical professionals:

Dr. Bernstein’s Diabetes Solution – by Richard Bernstein (Also a doctor)

Taking Control of Your Diabetes – by Steven Edelman (Also a doctor)

Any of Sherri Colberg’s books (Also an exercise physiologist)

Any of Gary Scheiner’s books (Also a CDE)

The A1C Champions Program

If you’re a medical professional and work with people who have diabetes, you can request one of these six free, hour long educational programs for your patients. Each program is presented by someone living successfully with diabetes.

Programs

• Taking Control – Basic educational program

• Managing Diabetes: The Next Step (live and webinar)

• Telling My Story - Adult with type 1 diabetes speaking to type 1 youth

• Our Diabetes Journey – Given by parent and child for parents and kids

• Me-Power - Program from a person with diabetes and CDE

• Diabetes Together – Given by a person with diabetes and his/her care partner

To request a program, please visit www.vprpop.com or call: 816-756-5999.

If you have diabetes and would like to become an A1C Champion, please contact the website or call the number above.

I’ve been an A1C Champion since 2006 and love going out and helping others with diabetes learn, grow and gain the confidence to do better.

Whether I’m speaking to a support group of patients in rural Ohio, or am part of a full day health event in Albuquerque, New Mexico, it’s the cliché in action – "you get when you give."

Many A1C Champions say being in the program keeps them more committed to their own health. Fellow Champion, Doreen, says, “When I share my story people open up their lives to me, wanting to talk and share their challenges about diabetes. I can’t imagine doing something more rewarding.

81 years young Charles has been with the program almost since it’s beginnings in 2003. “These programs give hope and information that patients often do not receive from their healthcare provider, and, they actually see that people can manage their diabetes.”

Finally, as my new friend, new Champion, William, said, by way of Groucho Marx’ quote, I wouldn't belong to any club that would have me, “I’m ecstatic beyond words that the A1C Champions program would have me, and allows me to be part of the team, do this work and give back.”


Special dLife webinar to get the action steps in my book


Screen Shot 2014-08-12 at 3.00.35 PM

Last year I wrote, "Diabetes Do's & How-To's," to give you very specific action-steps to live your healthiest life with diabetes. The book covers Food, Fitness, Medicine and Attitude. And, has 19 gorgeous cartoons by illustrator Haidee Merritt who's lived with diabetes since she was two!

Now I'm giving a special webinar with dLife so you can have several important steps to "health-up" regarding what you eat, weight control, checking blood sugar and staying emotionally strong to manage your diabetes day to day. 

Tune in next Monday, August 18th, at noon for the webinar. You'll get great tips, your questions answered and a special one-time discount on the book.

It'll be a great learning experience and I promise to make it fun. To register for this free event, just go to: https://attendee.gotowebinar.com/register/5200175787112752130

See you there and invite your friends and loved ones!

How's your carb-counting?

images


The great CDE, founder of Integrated Diabetes Services and author Gary Scheiner, and his fellow CDE and Director of Lifestyle and Nutrition, Jenny Smith, conducted a Carb Quiz in May. 

Below is part of the interview they conducted with three outstanding "carb-counters," that may give you a few ideas to make counting carbs easier.

Of course I no longer call it carb-counting, but carb-guessing. And I'm sure we can all relate to that!

For more carb-guessing advice, click here.

What are some of the tools you’ve used over the years to count carbs?

 Stephanie: I’m using measuring cups and a food scale at home to be as accurate as possible.  At  times I am tempted to just pour a cup of milk without using a measuring cup, but then I think about how well controlled my BG is because I do measure and this helps me continue to use tools.

Lisa: I started by using measuring cups and a food scale.  After a few years I learned about “carb factors” and this has been most helpful for more precise counting for the portions I want to eat.  I use carb factors a lot for fruits and vegetables.   I find when I use measuring tools at home it trains my eye to be aware of what a particular portion looks like and how much carb it may contain – it’s so helpful when I don’t have a label to read.  When I’m eating out at a restaurant I look up information online or I use my Calorie King book as a reference.

Stephen:  There was a learning curve –some foods don’t “look” like they would have sugar!  I had to remember there was carb in milk!  I downloaded Gary’s book – Think Like a Pancreas and read it in one night and realized I needed help.  I use Calorie King and I look up glycemic index as well as information when I’m going to go out to eat.  I do use measuring cups and labels, as well as the estimation tricks I’ve learned from working with Integrated Diabetes Services.  I’m the primary cook at home so it’s easier to count when you know what has gone into a dish you’ve prepared.

What has worked the best for you to ensure accuracy?

S: Measuring is my best tool.  I feel measuring at home has helped me count carbs more accurately when I don’t have a label or the measuring tools to use – such as in the College dining hall.  I have learned to eyeball a portion of carb when eating out by weighing fruits and other carbs at home. I also tend to look info up before going out so I have a more specific count than a simple guess, especially if it is a restaurant that I’ve never been to before.

L: I use eyeball portions when I have to “guess”. I often refer to the size of a tennis ball because I know about how much this is as a measured portion and then I can more accurately account for the carbs when I have to guess.  My best time saving trick at home is to use a measured ladle for soups/casseroles (½ cup per ladle), and I use drinking glasses with a line that equates to a specific portion (pouring up to this line on the glass is equal to 1 cup).

Stephen: I feel the best trick is to trust my gut feeling. Calorie King may say “this is 15g carb”, but then I’ll consider my past experience with the food and what the response was on my CGM. I may adjust up or down by 2-5g based on previous experience.  The use of measuring cups and labels are also major players in ensuring I learn how to count – it helps when I have to guess something that may not have a label.

Do you take into account fiber/glycemic index/glycemic load?

S: I do consider fiber – I subtract it all off the carb count. If it is a lower glycemic index food, I may deduct a bit off the suggested bolus.

L: I don’t use anything scientific, but I keep these things in mind when meal planning and counting carbs to evaluate the effect after meals.

Stephen:  I do consider fiber – I subtract all of it off of the carb count. But, I also take into account the kind of food it is or the glycemic index of the food– sometimes I only subtract ½ the fiber count (I use this for things like granola bars because of all the added sugar, I’ve found that I really can’t subtract all the fiber noted).

Do you feel the use of “smart” pump features helps you cover your meals better?

S: I haven’t been using square/dual bolus (no one has really taught me what to use them for) – but I do use the temporary basal feature for my lacrosse practice as well as running.  I feel it’s the accuracy in counting carbs that makes the major difference in post meal control.

L:  I like to use these when grazing or when eating out at a buffet – I don’t think I use this often enough and when I look back at my pump records, I see I could probably use it for more foods/meals. It’s a question I should ask my nurse educator about so I can use this more effectively.  Since I do a good job with precise carb counting already, I assume proper use of the combo bolus would improve my BGs even more!

Stephen: I have no experience with the smart features on the pump, but I would assume that it’s accuracy in counting as well as portion estimation that makes the most difference.

Do you have any words of wisdom to help everyone become a king or queen of carb counting?

S:  “When you are home and you have access to scales/measuring cups – use them frequently. This will help you with more precise guess-timation when you are out and don’t have your tools or a label available.”

L: “Take classes or ask to take them. You might think you are good at counting carbs and there isn’t anything new you’ll learn, but there is always something new. Every class seems to teach me something I didn’t know before, even as good as I think I am at counting!”

Stephen: “Measure your portions when you have the tools available, and learn how to estimate these when you are away from your measuring tools"

My best advice - routine. If you eat the same basic foods most of the time, you'll get to know how they affect your blood sugar. 

And, if you can, eat a low carb diet. Then, for the most part, your blood sugars won't be bouncing all over the place! Or as they say, "riding the roller coaster."

A message from diaTribe's editor Kelly Close


diaTribe-66

Kelly Close if you don't know is a tireless diabetes advocate and on the front lines of diabetes information and its dissemination. A highly respected financial analyst, as well as someone who's lived with type 1 diabetes for more than 25 years, Kelly runs Close Concerns and keeps an eagle eye on research, product development, pharma and the FDA. diaTribe is her free every other month e-newsletter. 

The July issue had a message from Kelly I wanted to pass along. Given the FDA's risk-averse policy to new drugs and devices, many products that could help the many linger and languish. Kelly's inviting any and all of us to chime in to the FDA at their public hearing August 11th. Here's the article below and here's the plea: please email us on what you would like the FDA to know at: 

We want our diabetes treatments to be effective, but we also want them to be safe, and it is up to the FDA to decide if the benefits of a given medication outweigh the risks. Our concern, is that the pendulum has swung too far in favor of caution and safety at the expense of innovation. Much-needed new products are being delayed or even shelved entirely. the good news is theta FDA will be considering these risk-benefit tradeoffs at a meeting in August, and you have a chance to make your voice heard.

Determining whether a new diabetes drug should be approved has never been easy, but the turning point in this debate occurred in 2007, when Avandia was implicated for apparently increasing the risk of heart attacks. The FDA revised its guidelines so that drug companies would need to demonstrate cardiovascular safety before approval, adding huge costs to the process ($100 - $300 million). The FDA tried to ease this burden by allowing the companies to submit so-called interim data, or data midway through the cardiovascular (CV) trial that demonstrated safety, and the companies could complete the trial after the d rug was approved.

Unfortunately, that hasn’t worked out too well. Once the drug has been approved, participants want that drug and are motivated to abandon the trial. It’s logical behavior, but it negates the very costly study.

The result? Companies are giving up on diabetes. Bristol-Myers Squibb left diabetes entirely in 2013, and Genentech is out too. The cardio trials can delay drugs (like degludec) and follow up drugs (IDegLira) for years. Takeda said it won’t develop its once-weekly DPP-4 inhibitor in the US because trials are too expensive, while delays with Sanofi's GLP-1 agonist Lyxumia slowed development of entire new classes of diabetes drugs.

In sum, there are benefits to the trials, but we believe we are sacrificing innovation at the altar of safety. (And by the way, Avandia was ultimately found to be safe).

The FDA is holding a public hearing on August 11 to discuss how to address interim data in trials. This is a real opportunity for our community to make our voices heard. Registration to attend is open until July 28; those who can’t make it to Silver Spring, Maryland, can submit a comment right here at Kelly@diaTribe.org. Every comment submitted before July 28 will be considered, but you can submit all the way up to October 10. We would love to thank the FDA for giving patients and families and healthcare providers the option to comment. 

When our response is ready, we’ll tweet it and make it widely available – we’re working on it now! This issue is complex, and it’s only part of a much larger question about how we should handle drug development and approval. But for now, let’s tell the FDA that the status quo isn’t working. We also look so forward to following up November 3 in a conversation with FDA – read our new now next for more on this!

very best,


Patients learn something invaluable from each other


Rivaphoto1

I am not medically trained, yet there’s a lot I can give another person with diabetes that a health provider can’t. From 42 years of living with diabetes I know a lot more about medication and food and blood sugar than most.

One thing I am however is a peer-mentor with the A1C Champion program, and I am among 80 people living with diabetes who speak across the country to other people who have diabetes.

When someone with diabetes, either recently diagnosed or having had it for years, hears from their doctor what they have to do to manage it, they’re usually looking back in the face of someone who doesn’t have it. Someone who thinks what’s the big deal about changing how you eat, taking up an exercise program, taking pills with every meal or six injections a day? Just get on with it.

But when we talk as fellow patients those we talk to look back in the face of someone who gets it. Who knows how frustrating it is when even though you’ve been “good”- eaten the right foods and walked around the mall - your blood sugar is “bad” - not in your target range.  

The hour-long programs we present as peer-mentors provide information and education, but largely provide inspiration through our own personal stories of struggle and success. 

Patients learning from patients is a very different kind of education than patients learning from medical professionals. And it's happening more and more. Patients go online, follow diabetes bloggers and volley what they know back and forth. Patients learning from patients is about a shared bond and experiences. 

This led me to reflect on an early A1C Champion presentation I gave in Buffalo, New York. It was the first time I was double billed with a diabetes educator. Her talk preceded mine, so I leaned back and listened. What I heard was forty-five minutes of numbers: A1Cs, blood pressures, weight and weight control, exercise, portion control, and carb-counting. 

While all this is important information, I also heard what she left out. That these goals are not easy. That we have to find a way to fit it all into our day. That a small step in the right direction is to be applauded. That we should pat ourselves on the back for every good effort.  

The purpose of my talk I quickly saw would be to say what she did not: to talk about how we hold diabetes in our lives and if necessary how holding it differently can help. Taking the stage I shared my own shock and fear upon diagnosis, my subsequent denial, and my early complications from that denial.

The room quieted. I was they saw like them. I see the same landscape they see. I tramp through the same darkness trying to figure out half the time why my blood sugar’s doing what it’s doing. I look for solace when diabetes rains down upon me or drains me out. 

“When you’re so busy testing your blood sugar every day,” I said to my audience, “reading labels, counting carbs, and calculating everything, do you stop to think why you’re doing all this work? Isn’t it to see the grandkids grow up, start that second career, create the best vegetable garden in town, contribute something to the world, or have another million days with your spouse?” 

Heads nodded and people leaned forward. They turned from silent witnesses into curious involved participants. Someone had brought humanity back into the room. Someone had understood and acknowledged this piece of living with diabetes where their heart resides, along with their struggle. 

My predecessor, warm and personable though she was, didn’t have diabetes. That put her not just on the other side of the projector, but on the other side of our experience, where so many healthcare providers sit. 

We patients, however, are the experts of our diabetes and we are in the daily business of chronic illness. We have life adjustments to make, and since we have precious little help to make them, we are reaching out to each other. 

Here are my 5 recommendations for a better tomorrow: 

1.    Learn all you can about diabetes, and about your diabetes

2.    Pace your efforts, forgive your mistakes

3.    Appreciate what you hold dear

4.    Spend more time doing what you love. While we’re living with diabetes let’s not short-change the “living” part. 

5.    Consider yourself "more than" not "less than."  We're all doing a second job.

After the program, people crowded around to thank me, and they were smiling. Well, if anyone can leave a diabetes meeting with a smile then I figure I've done something right

Life with Diabetes Update 2014


Screen Shot 2014-07-18 at 8.11.19 AM

This poster was created last year by the American Recall Center with the help of several diabetes bloggers to help educate people about diabetes. I just found it and thought it worth updating you on several things it says here and explaining a little further.

So starting at the top of the maze and going down, "Keeping my blood sugar under control requires both meal planning and exercise." True. It also requires knowing stress often raises blood sugar as well as being sick.

"Diabetes has to be a factor in every decision I make." Well, most decisions, and I do spend an exceptional amount of time thinking about it. Except maybe when I'm deciding what color bedspread to buy.

DID YOU KNOW? "Warning signs are excessive thirst & urination, weight loss and lethargy." Another key sign of diabetes is often blurry vision.

"Sugar alone does not cause diabetes." Actually sugar does not cause diabetes, period. Best we know, type 2 diabetes is caused by genetics,  being sedentary and overweight. Of course if you eat too many foods with sugar, it's easy to gain weight. The jury is still out on what causes type 1 diabetes.

"I can quickly go from perfectly fine to dangerously low or high blood sugar." Yes, one's blood sugar fluctuates all day - and all night. But "quickly" is debatable. It may not take hours, but it also doesn't take seconds.

"Diabetes can happen to people who have no apparent risk factors." Likely the risk factor that's not apparent is genetics. And, few people know, but 1 in 5 people with type 2 diabetes are slim or normal weight.

DID YOU KNOW? "25 million people in the US have diabetes?" Unfortunately, that's gone up to 29 million people and currently 86 million people have pre-diabetes (or Stage 1 of Type 2 diabetes.) That's gone up from 79 million. And, one-fourth of people in both populations don't know they have diabetes.

"We are capable of achieving anything that a regular person can." Well, yes and no. Like everyone with diabetes, I want people to know it doesn't define or limit me, but it does at times influence what I can do. If I'm having a low, you would not want me to do your taxes. And, hmmm...I think you still can't be a commercial airline pilot.

"Diabetes needs more research & funding to find a cure." Absolutely.

"There is no such thing as a diabetes diet. Different things work for different people." True, there is no such thing as a diabetes diet. Not like 42 years ago when they handed me one and told me I could no longer eat candy bars. The diet recommended today for all Americans is also recommended for people with diabetes: lots of vegetables, some fruit, whole grains, low fat dairy, lean meat, healthy fats, occasional sweets. Personally, it's easiest to keep my blood sugar relatively stable when I eat low-carb, which I do.

DID YOU KNOW? "People with Type 1 diabetes must have insulin to survive." Absolutely. I'd also add having a loving spouse, furry pet and work or hobby you love is pretty important too.

"My family plays an important role to help me maintain my health." Hmmm…seems to speak to my point above. However, if you don't have family or that family, do it for yourself.

The more we educate ourselves, and the public, about diabetes, the better off we'll all be. If you really want to know about diabetes and how to take care of yourself, out of the goodness of my heart I can only tell you to get a copy of two of my books, "50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It" and "Diabetes Do's & How-To's."

As Oprah  says, and I agree, absolutely, "The more you know, the better you do."


Haidee Merritt's fabulous cartoons


Omnipods

The other day I was browsing the wonderful cartoons of Haidee Merritt. Haidee contributed a number of her cartoons to my book, Diabetes Do's & How To's, and has often and generously sent me more for fun. We had a great time working together, she type 1 from the age of 2, me 18.

So, I was thinking why should I be the only one to have all the fun? Here's a joyful look at some of Haidee's published and unpublished cartoons. Enjoy.

darkest before dawn_2
wolf
Walk-a-thons
Riva_0002 copy

Of course, for more fab cartoons you can go to Haidee's website and purchase her book, or get mine. Better yet, get both!

ADA 74th Scientific Conference


Screen Shot 2014-06-20 at 1.43.57 PM

The American Diabetes Association just held it's 74th annual conference in San Francisco.

16,000 medical professionals, patients, exhibitors and trade people attended. Of course I would have made 16, 001 but I was in Phoenix attending my peer-mentor annual conference, the A1C Champions.

So, while I wasn't in San Fran, I've been following the research, science and encouraging shift highlighting patient voices posted on various web sites. 

Here's are three if you want to catch up along with me:

Healio Endocrinology

Medscape

Diabetes Mine


This is Type 1 diabetes, high and low blood sugars


Screen Shot 2014-05-28 at 9.07.29 PM

This was on Facebook. This is not my Dexcom, but it could be. What struck me is how so many of us are compelled to put our numbers up and share them looking for comfort, camaraderie and someone else who "gets it." For when it comes to getting it, I believe much of the health care community is in denial. 

We cannot "control" blood sugars in people with diabetes who use insulin. That's everyone with type 1 and some with type 2. But that frustrates health professionals; after all their job is to cure us, short of that to fix the problem - our up and down blood sugars. 

But that is the very nature of diabetes - fluctuating blood sugars. And even with 24/7 oversight, no matter how hard I work at it, trying to do what a normal functioning pancreas does, I fail. My brain simply cannot replace a normal functioning pancreas.

I wrote about this recently on The Huffington Post in "Type 1 Diabetes Fully Explained." It went viral in hours. Hundreds of fellow Type 1s wrote to me saying how I had perfectly captured how impossible it is to perfectly control type 1 diabetes. 

It is time for us to agree that the norm of diabetes, intrinsically, its very nature is up and down blood sugars, especially for T1D and insulin-dependent T2s. 

It is time to accept this and stop trying to fight it and control it. I hate that word control. This doesn't mean that we shouldn't work at having blood sugars as often as possible in our target range, but let's agree it's hard and let's agree we can't be perfect at this and let's sigh a collective sigh of relief. We deserve it.

Furthermore, creating goals is the wrong way to manage diabetes. Goals reinforce the idea that if we only work harder we can lick this beast. But we can't. Goals reinforce that there is a perfect standard and we just aren't working hard enough if we haven't achieved it. 

Rather, what we should learn is what to do with our numbers in the moment, keep breathing, and have the knowledge and no self-blame to do it - and then smile because we did something good for ourselves.

Funny thing, but given that blood sugars fluctuate all day and all night, we are much better off to befriend our efforts, both strong and weak, and behead the doctor who tells us our numbers "should" be better.

I want people with diabetes to hear from their health professional:

"This is tough. You have a condition that requires a lot of work and vigilance. Some days you'll do better than others. Don't beat yourself up, instead do your best as often as you can and know that the very nature of diabetes is up and down blood sugars. You cannot do this perfectly because your body will be doing something unpredictable a good deal of the time. Just know this, accept this and keep breathing. I for one honor what you do living with this everyday." 

Best diabetes blogs of 2014


Best_of-badge-diabetes

Every year Healthline, committed to providing health and medical information, tools,  technologies and doctor-reviewed resources to patients and providers, votes for the Best Diabetes Blogs.

I think I've been awarded this honor each of the past several years for this blog right here on DiabetesStories. 

My kudos to the fine and notable company I keep. All of these people and organizations are out there to help you, whether you have type 1 or 2, to learn, connect, commit to and improve your diabetes care. 

Here's the list and a few sentences description of each - it's a great group to follow.

Thank you Healthline.

"Fed Up" a movie about childhood obesity


Unknown

I have never been a fan of Katie Couric, particularly. But last night my husband and I saw her film,"Fed Up." and appreciated how she is bringing to light childhood obesity. While everything I heard in the movie I already know, it was still great to hear it again. 

The plot of this documentary is the pure evil perpetrated on us by big food companies. Their mission is to make money for stockholders and they do it at the expense of our health. They push products out into the marketplace that are unhealthy but earn their shareholders megabucks. Featured in the film are the experts who have for decades alerted us to this situation including Gary Taubes, Dr. Robert Lustig, David Kessler and many others. 

The devil is sugar. We eat it by the bucketful and it is hiding in practically everything we eat.  While we know it in its natural form of table sugar, it's also in bread, pasta, rice and hidden in foods like ketchup, yogurt, spaghetti sauce, Hot Pockets, Pop-Tarts, waffles and on and on, well, it's just about everywhere, including the majority of our processed, refined food products. 

It's truly a travesty and tragedy that the American government has sold itself out to the food lobbyists. How short-sighted is it that we allow people to eat foods that down the road will cost their health and their lives. And we will all be paying for their healthcare. The obesity rate has risen in parallel with the removal of fat from our food when we once thought fat was the culprit for obesity. But, you know, it is not. And, as everyone would like you to believe, "a calorie is a calorie," it is not. Different foods work differently in our bodies. The biggest take away is unused sugar turns directly into fat in your body. A calorie in is not a calorie out. Start eating healthy fats and stop eating refined, processed food-like substances as Michael Pollan will tell you. 

The real tragedy is when you see what it is doing to our young people. When I went to school lunch in the cafeteria was homemade meals and my favorite, tuna fish sandwiches. Today, kids at school get 80% of their lunchtime food from fast food franchises - Pizza Hut, Taco Bell, McDonalds …they are truly up against it to find a healthy meal. Shame on the American government. 

Food manufacturers know the earlier they hook a child on their food, they will form a lifelong customer. Thus, TV commercials and characters like Ronald McDonald are marketed to kids. It is criminal what we allow food manufacturers to do and put in the marketplace. It is simply immoral. It is costing all our health. To live healthy in America you have to be extremely vigilant.

If you're lucky enough to have an independent theater in your community, see the film. Then make a pledge to eat healthy - real foods. Stuff that doesn't come from fast food restaurants or out of bags or cans. It's not more expensive to buy a whole chicken and some vegetables to cook for dinner, than fast food chains would like you to believe. 

I've said it before: food is medicine. Eat healthy, feed your family healthy, real food and let's not let the big food companies steal our health. This is our generation's battle just as tobacco was the battle before us.

Help get Nagbot on his feet - a virtual caregiver from Lifebringer


Screen Shot 2014-05-15 at 11.23.46 AM

Herb Meehan lost his vision in one eye due to diabetes. "I was a TERRIBLE diabetic," he wrote me. "I didn't test regularly and when I lost my vision something inside me snapped." Herb's snap caused him to spend two years creating an intelligent software and voila Nagbot was born - an avatar buddy currently helping hundreds of people with diabetes. 

As Herb wrote, "I created Nagbot because way too many diabetics need encouragement to test regularly. I engineered this avatar into the application to be caring, like my wife, because not everyone has someone like that to help them." This cute little avatar Nagbot reminds people to test, stores blood sugar and a1c results, gives positive reinforcement and as Herb says, is just bad ass. 

Below is some more info from Herb, including a bit of his story, and, Nagbot's future is hanging in the balance on Herb's Kickstarter campaign that you can be a part of. 

Message from Herb

My name is Herb Meehan. I’m a type 2 diabetic and the creator of Lifebringer, a free diabetes management tool available to anyone with an internet connection. 

Lifebringer is a web application that is at home on your computer, tablet, and mobile device. Lifebringer goes beyond simply storing data. It's a diabetic journal, blood sugar test reminder system, test strip inventory manager, report viewer, and encourager. 

What makes Lifebringer unique is Nagbot. Think of Nagbot as your virtual caregiver. Nagbot helps you remember to test. Nagbot talks to you in plain English (no medical jargon used). And if your blood sugar is too low or too high, Nagbot suggests what you should do. If it’s within range, Nagbot happily encourages you to keep it up, as in keep checking. Nagbot also sends reminders and reports to you if you ask him to.

My Story

I was diagnosed back in 1999 and was on oral meds for the first few years. I eventually had to ditch the pills and go with insulin to manage my diabetes. It wasn’t enough though. A few years ago, I lost vision in one of my eyes due to complications with diabetes. Simply put, I didn’t do enough. After that event, I became the model diabetic. My wife and I began eating healthy, home-cooked meals, and I now test regularly.

unnamed

Why we don’t like diabetic journals

Let’s face it – data entry sucks. One of the chores of using a diabetic log is that data input isn’t fun. Lifebringer is easy and streamlined. Lifebringer doesn’t just collect your blood sugar information but will also forecast your A1c (a snapshot of the last three months of your blood sugar control). Here's a look:

Screen Shot 2014-05-15 at 12.11.01 PM

We have turned to Kickstarter to fund this dream and we’re hoping to continue to help everyone else with diabetes.  Please take some time to meet Nagbot.  My wife, Maryam, and I would be incredibly grateful if you would and also share or tweet this news. 

Travelin' Tips with Diabetes


Screen Shot 2014-05-13 at 4.12.52 PM

                                      At a garden in Tokyo with friends on a rainy day

Last week I received an email from the American Association of Diabetes Educators offering 8 travel tips, "Have Diabetes, Will Travel." I thought I would post them. 

I also asked AADE why there's no mention of how to adjust your dose if you take a long-acting insulin like Lantus or Levemir. You'll find that recommendation at the bottom after we had an email exchange. 

Have Diabetes, Will Travel

No Reason You Can’t Enjoy Seeing the World – You Just Need to Plan Ahead 

Just because diabetes is your constant companion doesn’t mean you can’t enjoy traveling, whether traversing America in an RV or flying to the far reaches of the globe. Ensuring you stay healthy and keep your glucose levels on an even keel does require a little bit of organization and planning ahead, though.

The American Association of Diabetes Educators suggests a plan of attack for ensuring your next travel adventure is safe and successful. 

1  Over-pack your medications – Gone for a week? Pack two weeks’ worth of your diabetes medications in case of travel delays or misplaced supplies (insulin, syringes, testing strips, extra batteries for your pump, a first-aid kit, glucagon emergency kit, etc.). If you use a pump, ask the company if you can bring a backup in case yours fails. Have a prescription from your doctor for insulin or oral medication in case of an emergency.

2  Protect your supplies – Keep your medications and supplies close at hand and don’t put them in checked luggage or in the trunk, where they can be exposed to harmful extreme temperatures (too hot or too cold). If you’re flying, keep them in the original packaging (so no one questions they’re yours) in a bag separate from your toiletries, as requested by the Transportation Security Administration (TSA), which manages airport security. Don’t worry, the TSA allows you to go over the 3.4 liquid-ounce carry-on limit for diabetes medications and supplies.

3  Identify yourself – Wear your medical bracelet or necklace that notes you have diabetes and take insulin (if you do). Bring a doctor’s note that explains you have diabetes and lists your medications, as well as a prescription in case you need more. Carry a health card that includes your emergency contact and doctor’s name and phone number. Learn how to say “I have diabetes,” “sugar,” and “orange juice, please” in the language of the country you are visiting.

4  Carry snacks and low blood sugar treatment  – Low blood sugar (hypoglycemia) can strike any time and food access during travel is unpredictable, so be sure to bring plenty of snacks such as peanut butter crackers, granola bars and  trail mix as well as glucose tablets or gel.

5  Simplify flying – Tell the TSA folks that you have diabetes (they’re used to accommodating people with health issues).  Visit http://www.tsa.gov/traveler-information/passengers-diabetesbefore your trip to learn about current screening policies. If you plan to inject insulin while flying, be forewarned – the pressurized air can make it more challenging to draw up your insulin, if using a vial and syringe, so be extra careful not to inject air into the bottle.

6  Test often – New foods, increased activity and different time zones can throw your glucose levels out of whack, so be sure to test frequently, including before and after meals. If you take insulin, keeping your levels steady can be tricky when changing time zones, so make a plan to adjust your schedule for injecting. Before your trip, see a diabetes educator, who can help you with this challenging process.  

7  Favor your feet – Wear comfortable well-fitting shoes and socks at all times – never go barefoot.  Check your feet frequently, especially after a hike or long walk.  Feet and ankles often swell during flights so consider wearing light knee-high compression stockings (20-30 mm Hg) or bring thinner socks to change into if your feet swell.  Wear a shoe that can be loosened if that occurs. Pointing and flexing your ankles during a flight can improve blood flow in your calf muscles and decrease swelling as well as lower the risk of blood clots.

8  Prepare for a health emergency – If you need medical treatment, ask your hotel to recommend a local doctor who treats diabetes. Prior to an overseas trip, get a list of local English-speaking doctors through the International Association for Medica1172l Assistance to Travelers at http://www.iamat.org/.

The secret to any successful trip is to take plenty of time and plan far in advance of your departure – and that goes double when you have diabetes. For more information about how a diabetes educator can help you plan your next trip, visit http://www.diabeteseducator.org/.

Sources: Centers for Disease Control and Prevention (CDC), American Diabetes Association and Joslin Diabetes Clinic

Regarding adjusting your long-acting insulin dose from AADE: “There are adjustments that many people make but we would not recommend any specifics. It's better to have your HCP guide you. Ask your HCP how to adjust your background insulin to account for the shortened day. 

You may also want/need to do extra blood glucose checks during your trip for information as you make insulin adjustments, as well as to account for possible variations in food and physical activity while on your trip.”

I concur. I'd also add, if you're an old hand and feel confident about adjusting your dose, do a little experimenting. First, use your common sense. Second, keep checking: 

If your day is going to be shortened, for instance, by 6 hours, take 1/4 less your normal dose. If your day is going to be lengthened by 6 hours, add an extra quarter. I take that extra quarter before I go to sleep after I've arrived somewhere because I take my Lantus at 9 AM. Then I start my usual dose again when 9 AM rolls around wherever I am. And yep, keep checking! 

That's what I do but in all things diabetes what works for me may not be right for you. Mind you, I only take 8 units of Lantus a day and I'm insulin-sensitive rather than insulin-resistant. 

Test your carb counting skill - win knowledge and maybe a prize


French-Fries-random-35742326-1600-1455

I received this release from esteemed Gary Scheiner's Director of Lifestyle and Nutrition. Take the Carb Counting Challenge:

We all think we’re “experts” after years of label reading and WAGcounting.  If you think you know your stuff, or just want to see what you do and don’t know, take The Ultimate Carb Counting Test from Integrated Diabetes Services. It’s free, fun, and you may win something!

Visit www.integrateddiabetes.com, click on Resources, and then choose Innovative stuff. The link to the carb quiz is at the bottom of the page. Take the test by yourself, with a group, or with the assistance of your friendly neighborhood dietitian. Write down your answers and e-mail them (with subject line “Carb Contest”) to Integrated Diabetes Services’Director of Lifestyle & Nutrition (and self-proclaimed guru of carbcounting) Jennifer Smith: Jennifer@integrateddiabetes.com.  Be sure toinclude your full name, e-mail and phone number. Jenny will score your test and send you a personalized reply, letting you know how you did and where your strengths/weaknesses lie.

The contest is open through May 31st, 2014.  In early June, the TOP 3 SCORERS will be contacted to receive $50 gift certificates to the restaurant of their choice. They will also have the opportunity to be interviewed and introduced as a Carb Counting King/Queen in an upcoming “Thinking Like A Pancreas” Blog.

So get out your food scales, Calorie Kings, and whatever else you think might help, and take the Carb Counting Challenge!

Integrated Diabetes Services is not responsible for any hunger you might develop while taking this test, or injuries you may sustain while arguing over the answers. 

For more information, please contact  Integrated Diabetes Services at 877-735-3648. Outside North America, call +1 (610) 642-6055.  

Integrated Diabetes Services provides in-person and remote consultation for insulin-users looking to improve their diabetes controland self-management skills.

Serving is our path to wholeness

Screen Shot 2014-04-20 at 9.18.05 AM

I've posted here before about holistic Dr. Rachel Naomi Remen. Herself a patient with Crohn's disease since the age of 15, most of her work in medicine has been with patients at their ends of their lives with cancer. 

She has created a program, called Commonweal, for cancer patients to gather and experience healing, if not a cure. She has created The Healer's Art, a curriculum for doctors to gather and heal from their work: not being allowed to grieve for their patients, medicine's emphasis on science and dismissal of spirit and mystery, and from the medical system itself that stresses being an expert over being a person. It is taught in many medical schools now.

She has written books telling the stories of life, of healing, of what's important that she learned as a very young child from her Rabbi grandfather and as a doctor tending to her dying patients. 

This passage I just read this morning from her book, My Grandfather's Blessings and it seems particularly fitting this weekend over the Easter and Passover holiday:

"Serving anything worthwhile is a commitment to a direction over time and may require us to relinquish many moment-to-moment attachments, to let go of pride, approval, recognition, or even success. This is true whether we be parents, researchers, educators, artists, or heads of state. Serving life may require a faithfulness to purpose that lasts over a lifetime. It is less a work of the ego than a choice of the soul."

I know so many people through this work who serve and I believe it is our path to wholeness. 

I try, as a practice, to be kind, to be conscious and to leave people feeling a little better than before I wandered into their space. But it's a practice and I need to be reminded to be conscious on a regular basis.

The twelfth year of my 20-year overnight success: Broadening the bandwidth to Flourishing with illness


I just got back from the Netherlands. I went as a speaker in Novo Nordisk's 5th DAWN Summit. Doctors, patients, psychologists, policy-makers and researchers gathered from 33 countries for two days of idea-generation and planning how to improve the lives of people with diabetes. I met wonderful people equally committed to help people with diabetes live fuller, healthier, happier lives, including a noted Dutch psychologist, Frans Pouwer, who hearing of my Flourishing Approach now wants to research it.

While in the Netherlands, I was also invited to speak to the leadership team of AstraZeneca, NL. AstraZeneca acquired Bristol-Myers Squibb and now diabetes is one of their largest market sectors. 

For the past few years I've been noticing, increasingly, we live in a time I'd call "The Rise of the Patient." As patients, we are leaders in our own right living with an illness, and many of us have insights and capacities to help transform healthcare delivery for chronic illnesses. My own work toward that is sharing with health professionals how to work from a Flourishing Approach, as opposed to the traditional Coping Approach. And for people with illness, to live from the same orientation. I shared the Approach with Ginger Vieira in this recent post, "From Coping to Flourishing: How a Better Mindset Can Transform Health."

Every year since I've been working in diabetes I've said, "I'm in the first year of my 20-year overnight success." Of course each year it increases by one. Now I am in the twelfth year of my 20-year overnight success - and I feel the traction: of my own success, of the power of the patient and of minds opening to the idea that we have to do chronic illness differently. Actually, I have been sharing the Flourishing Approach over the past several years at various conferences e.g. the American Association of Diabetes Educators', TCOYD, DiabetesSisters and each time I am met with enthusiasm and respect.

In the past few months I have received many opportunities to share the Flourishing Approach and its tools around the world. In December in Melbourne, Australia at the IDF World Congress, where I addressed 134 Young Leaders in Diabetes on behalf of Novo Nordisk.  A few weeks later, at the Royal Prince Alfred Hospital in Sydney where I addressed the endocrinology department.  

In January I spent 18 days in Bangalore, India where I gave six classes and workshops to health professionals at the Jnana Sanjeevini Medical Center, a diabetes clinic for the poor. I have also addressed more than 200 medical professionals at two premiere hospitals in Singapore. Two years ago I gave a workshop for health  providers of the Pascua Yaqui tribe. It was held over two days and the second day patients joined providers and together barriers dropped, communication opened and both saw a new space open in front of them.  

In March of this year I presented the Flourishing Approach to the Telehealth group of NYC Health and Hospitals Corporation. There a staff of committed nurse/coaches speak weekly to people with diabetes in need of help. They, like all I have spoken to, have been delighted to hear this more positive approach and are interested in applying it in their coaching practice with patients.  

I have written a number of articles on this approach. "A Flourishing Approach to Mental Health in Patients with Diabetes" in last summer's issue of the peer-reviewed On the Cutting EdgeTwo recent articles on The Huffington Post include, "Chronic Illness' Opportunity for Patients and Providers" and "The Antidote to Living With Diabetes." There will shortly be an upcoming article on Sanofi DX. And now I feel fully confident that I have enough research, tested the waters and seen everywhere I present this new framework/lens and way of working and living, providers and patients have only wanted more. 

So this year I will be writing my next and fourth book on flourishing with diabetes. It will provide the understanding of a flourishing framework and how - and why - we need to treat people with chronic illness differently than we do today. Moving from problem- to solution-focused. To look at what's working instead of what isn't, work from a trusted partnership, be compassionate, see the whole person and understand the context within which they live, not merely micro-manage the disease. 

We must offer hope and possibilities, knowing the power of both and that there is post-traumatic growth, not only post-traumatic stress. We must explore patients' strengths and resilience, as we help them move toward a healthy, happy, vigorous, robust and purposeful life.

For twelve years I have said, "You can have a great life, not despite, but because of diabetes." Because people shared with me this is how they were living. 

We can open a doorway to a new space to be with patients, and a new space for people with illness to be in, where coping is not the target or the answer, but flourishing is. 

It is time.


Elaine Stritch, 88 years young, type 2 and going strong

A few days ago i saw the documentary film, Elaine Stritch: Shoot Me. I was bowled over. I first saw Elaine Stritch, singer, Broadway actress, comedian and larger than life figure, in the original production of Steven Sondheim's Company on Broadway. She stole the show.

I must have been in my twenties, I have no recollection why I was at that show, it was much too intelligent for me at the time, but anyone who saw it couldn't help but be moved by a musical number that was Elaine's alone, "The Ladies Who Lunch." She commanded the stage and her deep throated voice grabbed out to the unsuspecting in the last row.

The documentary I just saw, which is more about her present life still putting on a pair of tights and while shirt, performing at 88, shows her as just as she's always presented herself - authentically. From skipping down along Central Park in Manhattan to yelling at cab drivers, to fearing for her life having a low. She's one bawdy broad. Elaine is just one of those people, the millions among us, who has type 2 diabetes and is on insulin and has lows and sometimes ends up in the hospital.

If you want to be moved and you have an independent film theatre in your town, maybe it's still playing. Or netflix it soon. 

Today, it's been raining all day and grey enough to keep me inside. and so I'm now watching her London performance from 2002 called Elaine Stritch at Liberty, a summation of her gorgeous career. This you can Youtube now. 

It has nothing to do with diabetes, it's pure performance, but hey, living with diabetes, and being sixty, more and more I realize, life is not just about work, but also play. Enjoy.


Dr. Rachel Naomi Remen talks about the art of living


Screen Shot 2014-03-26 at 11.40.51 AM

I have been a fan of Dr. Rachel Naomi Remen since I first read her book, Kitchen Table Wisdom. It is a collection of stories about what she has learned from her patients. Most of whom are in the last stages of cancer.

Remen herself has lived with Crohn's disease since she was in her twenties, yet her writing and her speaking is predominantly about the blessings in life that all too often most of us only see when we are at the end of it. The power of sharing our "stories," living with a sense of wonder and honoring each other.

I was reminded of Remen by a recent contact I made, a woman who once we started talking, immediately asked me if I'd read Remen's books?

So now I am taking up Remen again. Reading one of her books I had not, My Grandfather's Blessings. Already this morning only reading the introduction, I was in tears reflecting on all the blessings I have in my own life - my husband, family, friends, work; all the kindnesses and all the heart that is webbed and woven around me. 

Remen embodies bravery, speaking to doctors about how medical training is like a disease that may be necessary for health care providers to recovery from. Here she was giving an address last year to women in medicine. 

How uncomfortable she notes doctors are made by their own professional culture taught to dishonor the things that truly provide healing, like connection, hope, awe and authenticity. Medical school Remen said, "does not train us to be fellow human beings."

Her stories are amazing and uplifting. They will make you see your life differently. Thank you Rachel Naomi Remen. 

 

Could you have diabetes or pre-diabetes? Check your risk rate.


Screen Shot 2014-03-17 at 3.20.12 PM

1 in 4 of the 26 million people walking around with Type 2 diabetes don't know they have it. And most of the 80 million people with pre-diabetes have no idea their blood sugar is higher than normal and damaging their body.

If diabetes runs in the family, you're overweight and/or not very active, you've got the three dominant risk factors for Type 2 diabetes. 

Take the American Diabetes Association's Risk Test right now and find out if you're at risk for type 2 diabetes. Just answer a few simple questions about your weight, age, and family history. 

If you find you are at risk, make an appointment to talk to your doctor and get a fasting blood sugar test immediately.  

If you've never had your blood sugar tested, it's a simple blood draw at the doctor's office or a lab. That's all it takes. 

Pre-diabetes, or what I call Stage 1 of Type 2 diabetes, is when your blood sugar is higher than normal, yet not high enough to diagnose diabetes. But you want to know if you have Stage 1 diabetes. 

With higher than normal blood sugar, many of the complications of full blown diabetes like vision problems and neuropathy - a tingling or loss of sensation in your feet - may already be occurring in your body.

And within five to ten years, many people with Stage 1 diabetes go on to get full blown Type 2 diabetes.

If this simple risk evaluation, marks you at risk do something about it. Get a blood test, then find out how to start eating healthier, getting more activity and you may need medication.

The sooner you know, the sooner you can delay and/or prevent diabetes and that's something you definitely want to do.  


Timesulin launches Indiegogo campaign today


Today Timesulin, the little company that makes this great insulin timer cap, goes live with a crowd funding campaign on Indiegogo

If you want to send a message to the FDA that we in the States should have great, useful, life-saving products as quickly as anyone around the world, sign up at the link above. 

With a small contribution, you can get one of the first caps when released in the States - and like me, find you don't wonder whether or not you took your shot. You can also get a copy of my latest book, "Diabetes Do's & How-To's."

I've been using this cap for more than two years, since the day I met John at the IDF World Congress in Dubai. I can't tell you how many mornings I sit down at this computer, start working and wonder whether or not I took my long-acting insulin shot. Timesulin always lets me know. The reason I love this cap.

Share the news - yes we can get products over here that we want and need faster by pulling together. 

Would it surprise you to know, Timesulin is already in 40 countries around the world? Be part of the solution and you and millions will benefit.

The marvelous cartoonist Haidee Merritt


Screen Shot 2014-02-22 at 11.19.22 AM

Here's my solution for diabetes burnout. Pick up a book with Haidee Merritt's fabulous, funny, satirical cartoons. 

You can find them on her website, as well as in my book, "Diabetes Do's & How-To's." They are little energy-boosters in your diabetes instruction manual.

After all, we've all heard it, "laughter is the best medicine." And, once you:

• know how many pills/insulin to take for each meal and snack

• test your blood sugar ten times a day

• get your hour power walk in

• bypass that chocolate muffin for a carrot 

• do some hot, sweaty yoga to get rid of all your stress

...you are definitely ready for a belly laugh. Just don't look down at your belly while you're taking it or you'll be upset all over again.

Love blooms, quiets, grows, yells, deepens and is


Screen Shot 2014-02-14 at 3.36.43 PM

I've been married almost twelve and a half years. That's significant for two reasons. My husband is Dutch and in Holland they celebrate twelve and a half year anniversaries - half of 25 years. And, I didn't get married 'til I was 48, so this may be historic. It was my Virgo pickiness. 

Truth is, there are times I'd like to act on what my Aunt told me on my wedding day. "Just don't be surprised, Riva, when you have a day where he's standing in front of the window and you have to stop yourself from saying, "Just back up a little honey..." I've told him that story; it makes him nervous, and makes him laugh.

But most often my love, our love, brings up memories of a documentary I saw on PBS while we were engaged. I watched it alone, he was in Holland. 

It was about couples who'd been married more than 25 years. I remember at the time, even though we were engaged, I thought, 'Really? Can you really be married more than 25 years and still be happy? Have something to say? Not be bored? How's that possible? 

But there they sat, most couples hand in hand, grey-haired, glasses slightly askew, wrinkled, grinning, "I couldn't live without her," he'd say. Usually the man said it first; men are such mushes at that age. She'd poke him in the ribs. And smile.

So Happy Valentine's day honey. We still do find something to say, most days. And when we don't, that's okay too. I've come to know that's part of the contentment of being known and seen, accepted and loved. Amazing. 

And happy valentine's day to everyone out there, married, engaged, partnered or single. I once read the way to get love is to give it away. So true.

So I give it away every day twelve and a half years later. Of course I also keep the window open. 

Bringing new ideas to a unique diabetes clinic in Bangalore, India


ss trumpeter cow

This is my report from three weeks in Bangalore, India, working with a clinic that serves the poor with diabetes. Almost 30% of India's population are illiterate, and 70% live in rural areas. India has the second largest population growth of diabetes.

I realize I’ve never been to the third world before. Jakarta, Taipei, Bangkok, Gualin, these places, or at least where I was in these places, was second world. But here in Bangalore I have entered the third-world worm-hole and I am overwhelmed.

ss bulls car

I arrived a week ago. It wasn’t at the invitation of Erin Little, an amazing 27 year old American woman who’s single-handedly, with the help of one of India’s most renown diabetolgist’s,. Dr. S. Srikanta, developing and executing a leadership program for community village health workers here. No, when I heard about this from Erin, I invited myself.

So here we are. We being my incredible husband and me. Here in an airbnb Homestay for which I’ve just bought my first-ever pair of flip-flops; the shower floor is so squishy I can’t bear standing on it without shoes. I’m afraid to touch the walls because they’re grimy with decades of caked grease and dirt. The single blanket has burnholes, the linens are stained even after they’ve been washed, we take a pill with each meal to try and avoid getting ill, boil the water to brush our teeth and wash the dishes and I’d say I have a good case of the heebie-jeebies.

Most of the furniture is broken. The lighting is single sockets most of which are without bulbs. The wall décor consists of wires hanging out of holes. No closet door hangs properly or closes, and you don’t want to open the kitchen drawers. My husband and I did not come sponsored, we did not stay in a 5 star hotel; we lived like the local population. We wanted to contribute and make life better for people with diabetes, and yes, it is third world. I know there are worse apartments, but as uncomfortable as I am inside, I am more so outside.  

The advantage of our residence is we are only a seven minute walk to the diabetes clinic where Erin is living and Dr. Srikanta works from sun up to midnight taking care of Bangalore’s poor and wealthy, many of whom have diabetes.

ss traffic

Bangalore traffic is murderous. Motorbikes, rickshaws, taxis and private cars all following their own personal driving handbooks. We are on an amusement park ride every time we get in a tiny open rickshaw. I feel for the seat belt continuously, which doesn’t exist, as drivers and pedestrians expertly, yet heart-stoppingly, come within, literally, an inch of each other, every few feet.

Yet the seven minute walk to the Jnana Sanjeevini Medical Center is strewn from start to finish with garbage. There are small fires along the walk acting as garbage disposal. Yesterday two ravenous crows were tearing apart a rat. The dogs are thin and haunted. The air is filled with dirt.

By time we arrive at the clinic I have breathed only garbage, so much of it, it feels like I am chewing dirt. All these signs are how I know now I have never been in the third world before. I also know somehow there is also a fourth world where this would be heaven.

ss Erin

Me and Erin Little.

The clinic is an oasis here. It is open to everyone and it is served by a committed, well-trained, passionate group of doctors, educators, administrators and volunteers. The clinic was also closed for two years when Dr. Srikanta would not pay extortion money. Retalience was bombing part of the front of the clinic. We are reminded of this each time we step over the rubble in front and are greeted with smiles and “good mornings.”

Once inside the clinic, I am distracted from the poverty outside and reminded why I am here. The dedicated staff and volunteers, work tirelessly. Everyone wants to give, to help, to improve the lives of their patients, neighbors and extended tribe. 

Dr. Sri and some staff members below as I show them my Dexcom CGM.

ss Sri
ss staff dexcom

They want to learn from me - what I teach in America about managing diabetes, how to inspire behavior change, creating a new space for patients to move into where, while not “cured,” healing is possible. And, how I live as a successful patient - how and what I eat, how I manage my blood sugar, how I’ve had type 1 diabetes for 42 years, am "sixty years young" as they say here and have no major complications. Of course I joke with my husband by time we leave I will look sixty. My hair feels like straw from the water; I fear my face will be marked by every bit of garbage burning in the air.

I spent the Sunday after I arrived here giving a workshop for the children who come to the clinic with type 1 diabetes, and their parents. Some come from two hours away, on several buses. They come the first Sunday of every month. 

Needless to say, having a girl from Brooklyn standing in front of them was not an everyday occurrence. I know I gave them a sense of hope seeing one can live well with type 1 diabetes. I gave them a sense of pride as I taught them the raised finger salute I learned from Jason Baker of Marjorie's Fund, that one can have type 1 and be proud. 

Although, sadly, I have since learned with only access to older insulins and one test strip a day from the clinic, 80% will not live to be eighteen. To be sure they gave me more than I could give them; a reason to keep doing the work I do.

ss 2 girls
ss faces

I came both to teach and to learn and I am learning more than I could have imagined. Daily my husband and I go to the clinic and sit in on patient consultations. I have been invited to share my observations of how they are doing and what can be improved. It is an exchange of learning on both sides.

One afternoon we accompanied Erin and several staff members from the clinic to a village two hours drive away. Erin’s mission and work, through her non-profit organization Sucre Blue, is to train local village women in rural India to survey their village people’s health and then have a mobile team of doctors and educators come provide medicine, care and counseling. 

Screen Shot 2014-01-24 at 11.09.03 AM

Sitting on an outside floor of dried cow manure, I watched as villagers arrived from across the road to have their fingers pricked for the first time in their lives for a blood sugar reading, had their blood pressure taken, stood on a scale to record their weight and were then given instructions from the doctor along with any necessary medications. 

I watched all this, as I lifted my Dexcom CGM discretely from my pocket to see where my blood sugar was in that moment. It was other-worldly. But it is programs like this that can potentially change history, and more importantly, provide futures.

Here, in this place where many are poor, have difficulty affording vegetables, eat a traditional high carbohydrate diet, do not have a concept for self-management, where women put themselves last, there is so much work to be done. This is when you know the difference between first and third-world.

While Erin, who has been in India for several years, is dedicatedly, back-breakingly picking up stones to clear paths to better health, I came to offer ideas about working with patients so that they flourish, change behavior and create healthier lives. Remarkably, my ideas, new and alien here, have also been seen to have stone-moving power, and have been received with open arms and enthusiasm by Dr. Srikanta and his staff.

In fact, toward the end of our stay, Dr. Srikanta felt what I offered had the means to provide a true tipping point for enabling and inspiring patients. He proposed that we do a six-month patient study. The doctors and educators would employ my flourishing methods and tools that I have shared with them to help a control group of patients flourish. Another group would be treated as usual. Within a day the staff decided not to go ahead with the study. They felt it was unethical not to share these tools with all patients. That is what they plan to now do and see if the positive results they have achieved from their practice with these tools continues. 

During my time here I have given six mini workshops and lectures - about leadership both in how to work with patients and inspiring patients to be leaders in managing their own diabetes. I have spoken to the children and their parents, to the doctors and educators at the clinic and to doctors completing a certificate program on diabetes to expand their knowledge. I have been accorded the respect of a wise elder.

Yet it is a long road before them to travel. Here in Southern India I have found food to be a constant challenge to manage my own diabetes. The diet is largely vegetarian consisting of enormous amount of carbohydrate: rice, dal, lentils, nan, roti, pakora, lentil pancakes, peas, and curries swimming in oil. I must also admit my surprise my first day at the clinic when served coffee and masala tea both heavily sugared.

I immediately asked if they could make it for me sugar-free. “Sugar-free?” they asked uncertainly. “Yes, please, I have diabetes.” And I smiled. And that is how it has been coming for me. The patients and staff continued to be served sugar-rich coffee and tea as it is traditionally taken.

Tradition runs much of India. Tradition keeps the diet from changing. Pressing the point about lowering carbohydrates for better blood sugar control, I was told, “The Gods would be angry if we don’t eat these traditional foods.” 

Also poverty makes vegetables hard to buy and prepare for a family. 70% of the population lives in rural areas and make little income, and a culture of others taking care of you makes the concept of self-managing diabetes unrecognizable.

Can you talk about flourishing with diabetes in a third world world? I don’t know. Yet even here in a culture up against so many obstacles for diabetes health, an educator bounded up to me the day after I gave out an exercise for the medical staff to do with their patients, all smiles. She had done it and seen the smile on her own patient's face as she had him discover his strengths.

So it seems even here you can use the principles of “flourishing” to create better outcomes. That medical professionals can create greater rapport, help patients focus on what they’re willing and able to do, help them see their strengths and use them to take a step forward, provide hope, raise happiness and build confidence - all of which motivates more positive action. These principles cross cultures, I think, because they appeal to the most base instincts in all of us.

I know, like those at the clinic, I am making a difference. In a place where cows wander the streets, beggars follow and touch you for blocks with their outstretched hands, here among the shantytowns where mud and straw huts have laundry hanging on them, something in one small clinic is changing.

Like the story of the boy on the beach surrounded by starfish that have washed ashore. As he tosses a starfish back into the ocean, a man comes by and asks, “Boy, what are you doing?.” When the boy says, “I am putting the starfish back into the ocean.” The man responds, “Child, there are thousands of starfish here, you cannot possibly make a difference.” Tossing another starfish back into the sea, the boy responds, “I just made a difference to that one.”  

Leaving Bangalore I have felt and seen the difference I have made and Dr. Srikanta has told me he wants to continue to work with me to spread the idea of flourishing with diabetes throughout India. And just perhaps, my greatest legacy is the clinic now only serves sugar-free coffee and tea to everyone.

You can see more photos of this journey on my Facebook page

ss class

Copyright ©riva greenberg 2007. All rights reserved.