Patients learn something invaluable from each other

Screen Shot 2015-02-06 at 3.55.59 PM

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 Championprogram, 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 2015-02-06 at 3.58.00 PM

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.”

Learn more diabetes in one day at TCOYD


Screen Shot 2015-02-07 at 12.46.59 PM

The latest TCOYD (Taking Control of Your Diabetes) online newsletterfeatures my new diabetes survival guide – “Diabetes Do’s & How-To’s” – on its back cover. My thanks to all my generous friends at TCOYD and Dr. Steven Edelman, its founder. Read the whole newsletter and start learning.

I interviewed Dr. Edelman as a diabetes change leader on The Huffington Post. He created a true breakthrough – the delivery of diabetes education directly to patients via conferences. Don’t hoard conferences just for doctors was his enlightened thinking. For while Edelman is a doctor he has also been living with type 1 diabetes since the age of fifteen.

I also found my whole thinking about my power to live well with diabetes change when I attended my first TCOYD event. That was back in 2005 in San Diego. I was sitting in CDE/Psychologist, Bill Polonsky’s session. He said, “Diabetes doesn’t cause blindness, heart attack, amputation. Poorly controlled diabetes does.” Today he often says, well controlled diabetes is the cause of nothing. 

It made me realize my actions largely control my illness and I have power over my actions. Take good actions and you will benefit. I began using my power: eating healthier, eating less and walking more. The results have paid off and I see it each year when I get my blood work done. 

I highly recommend getting to TCOYD’s one day event, even if you have to travel. You will learn so much and it costs a mere $10 or $20 depending on when you register. 

Events are presented around the country, so see if there’s one coming up near you or take a trip, it’s worth it. This fall TCOYD will be in Worcester, MA, Omaha, NE, Albuquerque, NM and San Diego, CA. Here’s the schedule.

For now, sending my best to all my friends at TCOYD, the thousands of patients who have benefitted from a TCOYD event, and those who yet will.

A bonding two days at Diabetes Sisters’ “Weekend for Women”

Screen Shot 2015-02-07 at 1.37.13 PM

About 100 women gathered for a full two days of bonding, learning, laughing and hanging out with fellow women with diabetes at Diabetes Sisters’ annual conference, “Weekend for Women.”

This was also the second year partners were invited, so I invited mine. He came and got to meet about 40 others who were learning more about their wife and girlfriend’s diabetes, to air their feelings and learn more about how to be supportive.

I led a workshop, “Ignite Your Diabetes Power” Saturday morning. The secret? Identifying your strengths, building emotional resilience, knowing how diabetes works and knowing the actions to take to work it for you. It was a great workshop with about 60 of our d-sisters in attendance. 

Saturday night I had a table full of sisters join me for dinner, including our guest host speaker, the irrepressible Mother Love. In fact, every time she passed me anywhere at the conference, her arms opened wide to embrace me and her warmth enveloped me. Her story of a family besieged with type 2 diabetes that has taken almost all her family members is tragic, while she has committed herself to helping others and getting the word out. 

Sunday some of us took a field trip to an organic farm while others took a tour of Novo Nordisk’s Clayton, NC facility where we saw how insulin gets packaged, stored, sent down the assembly line and on and on. It really makes you realize how carefully our medicine must be treated.

For me, it was in Brandy Barnes’, Diabetes Sisters’ founder, closing message that made me realize the absolute value of this weekend. There shouldn’t be any woman with diabetes out there alone. Brandy encouraged us to tell any woman we know with diabetes about the conference, bring her into the fold so she can gain strength and knowledge and community. Amen.

Diabetes Sisters will be offering their West Coast “Weekend for Women” conference October 4-6 in San Francisco. If you’ve never been, give yourself the weekend as a gift for all you do living with this disease.


Free Classes at Type 1 University: A holiday gift just for you


CDE/pump trainer and author, Gary Scheiner, is offering free online diabetes classes throughout the month of January. 

Don’t miss this opportunity to relearn carb counting, lose weight on insulin, make better use of your pump or CGM and more. Gary offers 10 different classes to help you brush up on your management.

T1 University’s online one hour classes are available to anyone who uses insulin and parents and caregivers. 

Pre-registration is required, so take a look, check out this 10 minute sample class and then sign up today. 

You’ll be glad you did.

Walgreens diabetes magazine wins health information award

 Quarterly Magazine

I can’t say I’m in a Walgreens very often. Although I probably am more than I know as I recently discovered they took over the very famous, and for some unknown reason, beloved local New York City chain drugstore, Duane Reade. Oh, you’ll still see the Duane Reade sign, but they’re a Walgreens.

Anyway, I have dipped into Walgreens now and then because every so often they run a sale on my beloved Extend Bars – I love ’em for getting me through the night when my blood sugar’s going to take a nosedive as I sleep.

Anyway, it appears Walgreens has made an even bigger commitment to diabetes as sex ed/CDE Janis Roszler let me know with their “Walgreens Diabetes & You” quarterly magazine. Here’s a link to this fall’s issue.  The magazine won the national health information awards‘ top honor. So while I can’t give you any personal insight as I’ve never seen it Janis is writing for it and that alone gets my vote of merit.

So next time you’re in a Walgreens (or maybe a Duane Reade?) pick up a copy and check it out. I say it every time I give one of my peer-mentor A1C presentations  “Education is key to managing diabetes.” And as Oprah says, “The more you know, the better you do.”

How many ways can we “Take the next step” with our diabetes?

As Thanksgiving is tomorrow, and I’ll be off eating turkey, I’ve been reflecting the past few days how thankful I am and how fortunate I’ve been this year in both my personal and professional life. One of my professional joys and accolades has been the many presentations I’ve given this year at health events and conferences, and I’ve loved them all. For a girl who grew up quiet and shy, I love educating and inspiring a group. 

I spoke in April at Diabetes Sisters’‘Weekend for Women’ conference to 100 women, and helped them see their unique strengths to manage diabetes. In July, at Children with Diabetes’ ‘Friends for Life’ conference, I invited patients to explore and share their healthy habits, discover their personal reason for doing the work diabetes demands, and look for 1 positive thing diabetes has given them. Not one turned away scoffing.

Early in the year I spoke at an American Diabetes Association conference in Madison, Wisconsin to diabetes educators, and I closed the year with the third of my ‘Take the Next Step: Get Motivated’ programs that I do with fitness trainer Kim Lyons, (sponsored by Pfizer) at TCOYD

‘Take the Next Step: Get Motivated’ is an educational program about diabetic peripheral neuropathy (DPN), a complication of diabetes a reported 20% of patients get. It’s characterized by stabbing, throbbing, tingling or numbness in your feet and/or hands due to nerve damage. It’s highly likely many more than 20% of patients have DPN. But as I learned giving the program, many patients don’t associate DPN with diabetes. Many others are ashamed or embarrassed to talk about it with their doctor, assuming it’s their own darn fault.

The best way to keep DPN from progressing is to manage your blood sugar. Kim and I share basic tips about managing blood sugar and diabetes – healthier eating, getting more activity – chair exercises if you can’t walk easily – taking your meds, and we share tips for living with DPN. Right now there are some great easy exercise videos Kim leads you through you can check out on You’ll also find help for how to talk to your doctor about DPN. Please don’t let DPN, a very real and uncomfortable complication of diabetes, shame you away from getting the help you deserve from your health care provider. 

I like the title of the program. Living with diabetes, ‘Take the Next Step: Get Motivated’ can apply to anything that’s next up for us in our care. Maybe it’s time for you to take the next step to eat a little healthier – trade French fries for broccoli once or twice a week. Or take a step to move a little more – walk up a flight of stairs instead of using the elevator. Try lifting soup cans while you’re watching TV. Perhaps your next step is to know your blood sugar numbers better. If so, test a few more times this week. 

In the presentation, I share two stories of people I’ve interviewed, Tom and Arlene, who have type 2 diabetes and DPN and have not let it slow them down. In fact, it may have sped them up; Tom and Arlene are each about 70 years old and extremely active. 

When Tom was diagnosed at 52 with burning in his toes (DPN), he was, as he told me, a bona fide couch potato. His doctor said his DPN wouldn’t get any better. Tom swears it hasn’t gotten any worse and he’s so busy biking 50-70 miles a week he said he wouldn’t notice anyway. Arlene is leading hikes, snowshoeing, kayaking, and has climbed all the Appalachian mountains. 

I hold Tom and Arlene up as examples of ordinary people doing extraordinary things because they decided when they were diagnosed to be brave and “take the next step.” To not let diabetes stop them, but in fact have it motivate them to make their lives bigger, fuller, more satisfying and more active.

What’s your next step? If you’ve got one, why not take a baby step toward it today?

Actors Paul and Mira Sorvino are diabetes co-stars


Last Friday I went to the “Diabetes Cook-Off,” an event sponsored by SANOFI and hosted by father and daughter actor team, Paul and Mira Sorvino. The event was a pie competition. Two woman had sent in recipes for their healthy pies and they baked them up with the Sorvinos in NYC where a panel of judges awarded one the winner. (Recipe below) It was a generous event – all invited got to eat pie! 😉

But I was attracted to the SANOFI initiative Paul and Mira Sorvino are involved in, “Diabetes Co-Stars.” It’s awareness-raising around healthy eating and exercise, but also particularly, the importance of supporting a loved one who has diabetes. Paul was diagnosed with type 2 diabetes five years ago. 

I had the opportunity to interview the two actors for a few minutes after the event. (There will be a longer interview in November which I’ll post on the Huffington Post.) 

When I asked Paul Sorvino, “Why do you do this work?” he extolled the pleasure of helping others and gave me a great quote, “I wasn’t going to,” he said. “I was afraid it would hurt my career. But then I thought this is doing something good in two ways, educating others and it makes me more fearless to say, yes, I have diabetes.”

It turns out Mira didn’t even know her father had diabetes until he slumped over his plate during a family dinner. As for Mira, she said, “What can you give someone who’s given you everything, but sticking together through the hard times. It’s about family values.”

It was a lovely morning and all it took was one question to get these two sharing stories, recipes – now I know how Paul likes his salad – and I even have an invitation for dinner at the Sorvino’s should I ever be in L.A.  

But here’s the take-away. If you have diabetes, don’t go it alone. We all do better with support.

Create a support network that helps you manage diabetes

Everyone living with diabetes does better with support. And now there’s a new APP that can help anyone build a personal support network so they don’t have to do diabetes alone. 

I’ve just developed 3 FREE great short, smart videos to help you invite people to be in your circle of support. There’s an APP under “EatSmart” ‘Build Your Personal Support Network’ or you can also find the videos online on the left hand side of the page under “Build Your Personal Support Network.” 

Video #1- Will help identify what you might need help with – for instance perhaps a drive to the doctor’s office, a walking buddy or someone to learn healthy cooking with, and, who might be available from your circle of loved ones and acquaintances to be on your team.

Video #2 – Gives you tips how to ask for help in ways that people will want to help you. Yes, it’s a little bit science, a little bit art and a lot of just being honest, open and appreciative.

Video #3 – Gives examples how you can use people’s help to help you develop and maintain healthy habits. 

Take a look and a listen. It will only cost you a few minutes of your time and there’s so much to be gained. I don’t know what it would be like having to manage my diabetes without the support of my husband and several of my great friends. 

I’ve been in some great diabetes company lately


Phil Southerland

It’s been a quick changeover to fall here in the Northeast, rain, rain, rain, and I feel myself both speeding up and slowing down. Bizarre.

Over the last week I’ve had the pleasure and privilege to interview three diabetes leaders whose stories will show up in the next two months in my Huffington Post series on diabetes change agents: Phil Southerland, founder of Team Type 1 and author of his early memoir, Not Dead Yet, his indomitable mother Joanna Southerland, who made sure none of the dire predictions for Phil, diagnosed with type 1 at seven months would come true,  and Brandy Barnes, founder of the incredibly supportive space for women around the block and around the globe, DiabetesSisters.

This Friday I take off for the Left Coast where I’ll be doing an A1c Champion program in Portland, Oregon on the 14th and visiting with two other great diabetes advocates, Healther Clute and Jeff Horacek who co-host the program, ‘Transforming Diabetes.” In fact the plan is rather than my making a third appearance on their show, I’m turning the tables and interviewing them. Something to listen for on the show’s podcasts.

So between now and then the husband leaves once again for Holland where he does most of his work, that means cleaning the house after letting things pile up for two months, and I meet with my YMCA coach who’s leading me through a 12 week class of cardio and weight lifting. Oy! 

Maybe packing my suitcase tomorrow will count as weight lifting! Don’t you think?