Dancing with your provider?

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A Swiss approach to healing

As I head out to San Diego for the annual Roche diabetes bloggers social summit, I want to leave you with a beautiful piece of film that looks at the patient-provider relationship from an entirely different angle. The dance floor.

Imagine gathering in a room with fellow patients and providers to dance. Imagine how much more open everyone immediately becomes, how much more trusting and real as bodies bump up against each other. Doctors were as surprised as patients at the joy and openness they felt and how everyone lost their label of patient or provider and become a fellow person. From there, and then outside the dance room, interaction comes from a much more real and connected place. 

Imagine this quality of relationship with your care-giver. Once you do, you can imagine what this project discovered, that both care-giver and patient saw each other differently, the quality of the relationship changed and both were able to better nourish and advance the wellness process. 

Benedetta Barabino created this project in Switzerland where she lives. Benedetta holds a PhD in biology and a creative and curious mind from which she is always working on out-of-the-box projects to advance the healing process. 

I met Benedetta at the annual International Diabetes Federation World Congress conference almost two years ago where I was impressed by a similar project she was working on: having patients and providers work through blocks and barriers and advance healing through scripting and directing a play of their disease experience. 

Crazy stuff? Not so much when you consider what we’re doing isn’t working so well and that creative expression – whether dance-therapy, art-therapy or acting – can open a door to healing we seldom expose ourselves to.

By the way, the dance classes continue in Switzerland. Enjoy the video.

The value of having a personal support network

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An enthralled audience for my home recording session

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 A month ago I was asked to create a video about the value of having a personal support network living with diabetes.

I immediately reached out to tens of patients to ask whether they had a support network, who was in it and what it gave them. 

I got answers like: 

My sorority sister and college roommate has been my friend who has listened when everything about diabetes has been a “bitch” from diagnosis to 36 years later. She has consoled, encouraged me, kicked my butt when I needed it, laughed at crazy things, cried with me when it just got to be too much…all the time letting diabetes be the smallest rather than the biggest part of who I am. 

My husband is my life line. Without him I might not be here to type!!!

My grandchildren, when they are with me are always reminding me to take my blood sugar or my shot. They like doing it for me and it is such a motivation for me because they are learning with me.

My entire family helps me – My wife reads the back label of all purchases at the grocery, my grown children drink “preppy micro-brew beer” but always have light beer in the house for me, during family celebrations my 87 year old mother always makes sure there is fruit for dessert. 

From the moment of my diagnosis, my partner Dan has been there. He held my hand in the emergency room (I was in DKA), told me that he would help with all of the new eating habits, and has been there ever since. He helps with meal planning, keeping an eye on the barristas at Starbucks (um, she said no syrup), and always kindly saying “you seem low.”  He also never does the peeking at my meter – he respects my privacy but is always willing to help if I’m high or low.

What I know from the answers I received and my own supportive partner – who carries glucose tabs and sweeTarts wherever we go as back-up, points me toward interesting articles and is always ready to listen when I’m on the edge of burn out – is the rock bottom value of having people in your life who are there for you.

The video I wrote and recorded will actually be a series of three – 1) Introduces the value of having a personal support network and helps you assess who’s in yours,  as well as what you could use help doing; 2) 10 tips on how to communicate effectively to have family, friends and acquaintances join your support network; and 3) 10 tips how to leverage others’ help and support to maintain healthy habits. I will keep you posted when and where they’re available.

For now, however, I couldn’t resist showcasing my excellent audience during my recording session. Truly, they were mesmerized; they didn’t make a peep or move a muscle!

The Food Pyramid turns into “My Plate”

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Screen Shot 2015-02-07 at 4.02.39 PMMy Plate for healthy meals

Last week Michelle Obama and the US Agriculture Department replaced the 20 year old food pyramid with a simple icon, “My Plate.” 

My Plate is now the quintessential guide for healthy eating: a plate divided into quarters of slightly varying sizes representing how to create a healthy meal. It contains a larger quarter for vegetables, slightly smaller for grains, and slightly smaller for both fruits and protein. The hope is that it will help eaters avoid oversized portions and eat more nutritious meals.

Agriculture Secretary Tom Vilsack said after almost 20 years of preaching nutrition through a food pyramid that USDA officials now say was overly complex, obesity rates have skyrocketed. The new symbol is simple and gives diners an idea of what should be on their plates when they sit down at the dinner table.

In fact, it appears only one quarter of people who recognize the food pyramid ever used it. Further surveys show people are confused about what they should eat and most have no concept of portion sizes or balancing calories for weight control.

I heard about the “Plate Method” when Maudene Nelson, registered dietitian and diabetes educator at the Institute of Human Nutrition at Columbia University, reviewed a myth for my book, “50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It”. In myth number 26, “There is one specific diabetic diet I should follow” Nelson called “the plate method” for creating healthful meals magic. It’s in the Tips Box on page 142. She gave a little more specific instruction:

Fill half your plate with any variety of colorful veggies low in carbohydrates, such as asparagus, broccoli, Brussels sprouts, eggplant, carrots, or cauliflower. Fill one-quarter of your plate with carbohydrate-dense foods such as potatoes, rice, beans, corn, or legumes, and fill the remaining quarter with lean protein such as chicken, fish, lamb, pork, or beef. Meals made with the Plate Method naturally contain a moderate amount of carbohydrates, little fat and cholesterol, and a good amount of fiber.

Funny thing is with the exception of fruit on my plate, I use fruit for snacks, this is how I typically eat. Dinner is chicken or fish, beans and a green veggie. 

Seems Mr. Vilsack should have come to me years ago! 

“Friends for Life” is no exaggeration, come join

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Jeff Hitchcock, founder of Children with Diabetes

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“Friends for Life” is the annual conference given by the largest online resource for families with type 1 diabetes – Children with Diabetes. 

This year’s conference is in Orlando, July 5-10th, and you should consider coming if you have a child with diabetes or if you are an adult with type 1 diabetes. Registration is open for 11 more days – till June 17th.

While for many years Children with Diabetes has been, and continues to be, the “go-to” online resource for parents and youngsters. And, Friends for Life, the “go-to” annual conference for parents and their children – this year there is something new – adults with type 1 diabetes are invited. That’s my group, and I can personally attest to the fact that as a type 1 adult I often feel invisible. But show up and you will feel as though everyone in the world has type 1 diabetes as you bump into pumpers and glucose testers at every turn – and that’s in the hallway and the lecture halls, not merely the Exhibition Hall!

Friends for Life was the second diabetes conference I ever attendedin 2007. It was amazing for me to walk into an environment of 2,500 people who were affected by type 1 diabetes.

This year I’m presenting two programs and one workshop on Thursday and Friday mornings: “Flourishing with Diabetes,” “iDSM: inspired Diabetes Self-Management” and a Roche-sponsored session, “P is for Perfection and Knowing It’s Not the Goal.” All will give you tools to better manage your diabetes, and be happier in the process. Here’s the impressive conference program schedule.

In some odd way I have always identified as a child with diabetes having gotten it at the peculiar age of 18; not yet an independently functioning adult, yet living away from home attending college and so bereft of everyday family support. 

What stands out to me about the support for type 1 diabetes is it was begun by parents. Juvenile Diabetes Research Foundation (JDRF) was begun by parents who gathered to share their grief, questions and experiences about raising children with type 1 diabetes, and then began to advocate, and then created the most powerful type 1 research organization in the United States. JDRF remarkably dedicates $.85 cents of every $1 raised directly to research for a cure.

Children with Diabetes was started by a parent, Jeff Hitchcock, whose daughter Marissa got type 1 at 24 months. Searching in vain for information online about diabetes and children, frustration and purpose led him to start his own web site in 1995. In 2000 Laura Billetdeaux, whose son Sam got type 1 at eight years old, urged for an event that would bring families together so every year they pack their bags, as do thousands, and head to Orlando, Florida where Disney World is also on the conference agenda. 

And each year Laura is at the helm, with staff and volunteers, organizing the conference. This year I happen to know personally, that she does it with the organizational skills of a drill sergeant and the warmth of someone who has just become your new best friend. 

If you have a child with type 1 diabetes, you will find no other bonding experience and wealth of information like this. I know the same will be true for type 1 adults this year. Remember, you can register until June 17. 

As Jeff likes to quote Elliot Joslin, “The person with diabetes who knows the most lives the longest.” And, as Jeff and Laura prove every year, there is nothing like being in a place where you are understood and supported.

A book to help minimize high and low blood sugar

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Screen Shot 2015-02-07 at 4.06.17 PMNew book by Ginger Vieira

Two posts ago I wrote about Ginger Vieira who’s making a very impressive footprint in the DOC (diabetes online community). 

Today my interview with Ginger about her book, “Your Diabetes Science Experiment” is on theHuffington Post. Here’s the link.

She’s got a lot of great information about exercise and managing those nasty fluctuations in our blood sugar.

Big Blue Test earns two Telly awards!

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Last year Manny Hernandez founder of Diabetes Hands Foundation, David Edelman founder of DiabetesDaily.com and me, along with venerable producer Sean Ross, created the Big Blue Test video which was awarded the 2011 silver (the highest honor) and bronze Telly awards – respectively in the online programs regarding social issues and health and wellness categories.

If you were one of the 133,674 views the video received, you know the video promoted the benefit of exercise to manage blood sugar. Specifically, taking the Big Blue Test – doing just 14 minutes of an activity and seeing your blood sugar come down. Thousands of people saw their blood sugar lowered on average 20 points. Each view of the video also made possible a donation of $75,000 from Roche to two diabetes charities that sent life-saving insulin and supplies to children in need around the world.

This year Manny, David, Sean and I are back in the saddle, as is Roche, to create another big blue test video. Look for it this November, diabetes month. 

By the way, you don’t have to wait till November to see the benefit of 14 minutes of activity. Why not do it today? Then come November, join the thousands who will record their 14 minutes of activity on the Big Blue Test site (which I’ll be sure to tell you about) and work toward saving your own life, and that of a child in need.

 

How brave are you with your life?

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Screen Shot 2015-02-07 at 4.07.39 PMSing your song as only you can sing it

“Be brave with your life, so that others can be brave with theirs.” That’s a quote I read recently. Unfortunately I can’t remember where, but I do remember it, because I love it.

It means stick your neck out, follow your dream, sing your song and know that you’re not being pushy, but a role model inspiring others to do the same. 

While I don’t make New Year’s resolutions, I did assume a mantra last year, “Be bold.” And it moved me to do things, and risk rejection, I wouldn’t have otherwise. And that stretched me and brought me wonderful new things, and projects, like writing for the Huffington Post and speaking at numerous conferences to both patients and providers.

This year my mantra is, “Be bolder.” And, I now find myself repeating often in my head, “Be brave with your life, so that others can be brave with theirs.” Being brave with your life is not about ego, it is about dropping your ego; it is about putting yourself out there, and as an example leading others to follow. It is a selfless act not a selfish one.

Meet Ginger Vieira: Creating a big footprint in the DOC

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Ginger Vieira

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 Ginger Vieira, 25 years old, has lived with type 1 diabetes and Celiac disease for almost 12 years and is creating a large footprint in the DOC (diabetes online community). Ginger is a champion-winning power lifter, personal trainer, yoga instructor and inspirational video blogger, recently adding dLife to her credits. 

Her young life and work speak to building a life of accomplishment, regardless of and in many ways due to diabetes, and using it to help others.

I also interviewed Ginger specifically about her book, “Your Diabetes Science Experiment” for theHuffington Post: “A Diabetic Athlete Shares How To Minimize High And Low Blood Sugar.” 

Q: Do you remember your reaction when you got diabetes 12 years ago, at the age of 13?

Yes, crystal clear! After bursting into tears I asked the doctor if I was going to die. I had absolutely no idea what diabetes was. I spent three days in the hospital, and at first I felt really sorry for myself. Why me? But I started thinking about all my friends and some of the tremendous things they’d been through already – brain tumors, losing parents to cancer, hemophilia, depression, leukemia – and I realized that everybody has at least one kind of immense challenge in their life, and diabetes is one of my challenges. I left the hospital with that attitude and I still carry it with me. Nobody has it easy! So I don’t deserve to feel sorry for myself just because I have type 1 diabetes.

Q: Had you a plan for your future already at age 13 and did you wonder if you could still do it?

Well, I have always, always been a writer. Even in the second grade I was in love with writing. I wrote two different series, one was about my pets and their adventures, and the other was about a girl who grew up in a big family with too many boys in it (my real life!) and they were always getting in her way and screwing things up.

Q: What don’t most people understand about diabetes?

That taking shots and pricking your finger is actually the easiest part. People always say, “Oh my gosh, I can’t believe you do that every day.” It’s really everything else that makes this disease so incredibly complicated. Seemingly simple things like going for a long walk, sleeping in and missing breakfast, trying to concentrate when your blood sugar is too high, trying to have energy at work as a personal trainer when your blood sugar is recovering from being too low!

And the way this disease weighs on your emotions. It impacts how you think about exercise, food, friends, relationships, etc. It impacts literally every single part of your life and I will never expect a non-diabetic to truly understand that because it is so immense.

Q: You’ve set 15 records in power lifting. Did having diabetes motivate you to become a power lifter?

They were really separate goals at first. I joined a gym originally because I wanted to get in better shape and after a year of basic weight-training I’d gotten pretty strong! But when I told my doctor that I was thinking about going into powerlifting, he rolled his eyes. I wanted to prove him wrong and show other people with diabetes that anything is possible. I’ve never been much of an athlete when I was younger, so you can’t chalk it up to incredible genes or something. It is pure determination and persistence.

Q: You’ve done a number of YouTube videos and what’s apparent is your optimism. Do you have difficult days with diabetes and if so how do you get through them?

To be honest I don’t have days where I hate diabetes. Ever. It doesn’t occur to me to get mad at something that is simply part of my life, but that’s because I’ve developed and strengthened the attitude I have towards this disease. I can’t make it go away, so why am I going to waste energy hating it? That would feel like a waste of energy to me.

I also really don’t expect myself to do this perfectly. I don’t beat myself for having high blood sugars sometimes. I’m human, I absolutely cannot attain perfect blood sugars 24/7. So I give myself room to make mistakes, while also expecting myself to give my best effort.

Q: Your business is called “Living in Progress.” Tell me about that and why you call it that?

Coming up with the name was easy because I really believe that we are all constantly evolving. Wherever you are in your life, in how you think about your health and yourself right now, does not and will not be how you think about it even just a year from now. If you want to change something about your life and your health, it doesn’t have to happen overnight. It can be a very gradual progress and sometimes it happens without you even realizing! I’ve seen these evolutions in my own life many, many times.

I work with people one-on-one across the country, over the phone, on goals like making exercise a regular part of your life, improving your nutrition habits, rebuilding self-esteem, developing healthy coping habits, diabetes life management, and emotional eating. Everyone comes with their own specific goals.

Q: How can people shift their view to get away from being so fault-finding and being impatient with themselves and see their life more as a “work in progress?”

Well, that change won’t happen overnight, and it’s a process, but I believe the first and most important step is to really acknowledge where you are right now. To really describe and dig into how you are treating yourself, how you are talking to yourself, what kinds of limiting beliefs you have about yourself.

What has helped me the most in my own evolution is giving myself room to fail, room to be imperfect, and I really, really believe in gradual steps. When I started weightlifting, for example, I had no intentions of becoming a competitor. I grew into that place because I just focused on doing the best I could in the things I enjoyed the most.

Q: You’ve just begun working with dLife as the “Community Leader & Social Media Manager.” What does that involve and what do you hope to create for others?

For starters I’m going to be making video blogs for them with the same energy you’ll find in my own YouTube Channel video blogs. But I’ll also be connecting with people, talking about diabetes in a real way because I live with it in my real life, and providing support, knowledge and encouragement through dLife’s outreach and the many, many resources and information. It’s about support and empowerment.

Q: Who is your book, “Your Diabetes Science Experiment” meant for and what is it you want most for people to take away from it?

The book is for anyone with Type 1 or Type 2 diabetes who wants to learn more about insulin sensitivity, insulin resistance, how proteins, fats and carbs impact the human body with diabetes, and how to adjust your insulin doses for meals and exercise. I also help people understand how to make changes in their diet while adjusting insulin needs to prevent low blood sugars, and I break down how different types of exercise impact a body with diabetes.

The biggest thing I want people to take from this book is that when your blood sugars are high or low, there is a logical reason. And in many cases there really is something you can do to prevent those fluctuations from happening again. You just need more information than what you’re usually getting from the hospital or your doctor.

Q: You say in the beginning of your book that you could probably fill another 500 pages with how much diabetes impacts your thoughts and emotions. Can you give us a little preview of that here?

This disease is 24 hours a day, 7 days a week. There is no way that it isn’t going to affect the way you think. My next book will really bring to light the many aspects of life that diabetes impacts, to help people not only become aware of them in their own life, but also how to work through them. I believe we control how we think. Just as we control whether or not we choose to be offended when someone says something unkind to us, we control how diabetes impacts the way we think about food, exercise, and ourselves. But you have to really become aware of what’s going on before you can do anything about it!

Q: What’s the most fun or fulfilling part of what you do?

The Diabetes Online Community (“DOC”) community is incredible and I’m thankful to be part of that community. They are so supportive of each other! I know if I ever needed anything, really needed help, there are so many people in that community who would be there for me in a flash.

On the other side, I get messages and comments from people every week thanking me for some of the work I do, because of how it’s impacted their lives with diabetes, how they think about diabetes. I’ve gotten messages from people saying my video blogs, as silly as they are sometimes, actually inspired them to start taking better care of their diabetes. Messages like that are gold to me.

You can follow Ginger on Facebook at:www.Facebook.com/Ginger.Vieiraand on Twitter atwww.Twitter.com/GingerVieira

You can still be part of the CURE

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Yesterday the CURE banner was unfurled in the lobby of Miami’s Diabetes Research Institute (DRI). $63,000 was raised from people like you and me pledging as little as $10 and submitting their photo that’s now part of the banner. This includes a matching gift of $25,000 from campaign sponsors Animas and LifeScan. Monies raised goes to DRI’s singular mission – research for a cure.  

CEO Robert Pearlman said the banner stands as a visible testament to DRI’s mission, a reminder to all the scientists who go to their research laboratories every day how important their work truly is toward finding a cure.

Right now in fact, Scientific Director, Dr. Camillo Ricordi, has teamed with New Jersey’s Hackensack University Medical Center to test implanting insulin-producing islet cells inmonkeys’ abdomens rather than the liver. The hope is this will avoid the need for auto-immune suppression drugs. 

You can make a contribution to DRI either through info@drif.org or on the cure site, including raising your cure contribution to $50 to receive a mouse pad with the CURE image. 

How can you resist? After all I’m somewhere among those 1,300 photos – just on the right side of the ‘R’ 😉

The CURE banner will remain at BePartoftheCure.org.

Giving a workshop at TCOYD on diabetic peripheral neuropathy

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Kim Lyons, team mate, fitness expert and certified nutritionist

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Tips on living with diabetic peripheral neuropathy

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Arlene after leading a group of new snow-shoers

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OK, I think I’ve never, ever traveled this much but Friday – just as I’m getting on East Coast time back from Asia – I’m off to Albuquerque, New Mexico to talk at a Taking Control of Your Diabetes (TCOYD) event!

If you attend please do join Kim Lyons, fabulous fitness expert and former trainer on TV’s “The Biggest Loser,” and me at our workshop, “Take the Next Step: Get Motivated,” to learn more about painful Diabetes Peripheral Neuropathy (pDPN).

This diabetes complication results from nerve damage and causes burning, tingling, stabbing and throbbing pain most often in the feet and/or hands – or it can leave you without any sensation at all. At worst without feeling in your feet, you can injure your foot and not know it, which can lead to a foot ulcer and amputation. pDPN affects more than 20% of people with diabetes.

While pDPN can interfere with every day activities, sleep and being active, there is help – simple exercises, medication if necessary, and discussing how to treat the condition with your doctor. You’ll find more information here.

In our workshop I’ll be sharing stories of some amazing people who live a full and active life with pDPN – like Tom who rode 70 miles on his bicycle to celebrate his 70th birthday and retired schoolteacher, Arlene, an active DESA member, who’s climbed all 46 Adirondack peaks and leads hiking tours. Kim will demonstrate exercises that can help one live more comfortably with pDPN.

If you can’t make it to Albuquerque, you can find Kim’s exercise videos, management tips and guidance on how to speak with your doctor on the Take the Next Step web site.

If you miss this opportunity in Albuquerque, Kim and I will also be at TCOYD in Tampa, October 1 and San Diego, November 12th. We’d love to shake your hand if you attend. TCOYD events are a great one day health event all across the country for patients to learn more about taking care of their diabetes, and all for a very small fee.

I’m really excited to be part of this effort and hope to meet you somewhere along the way. “Take the Next Step: Get Motivated” was developed and supported through a collaboration with Pfizer Inc.