Diabetes resources and A1C Champion program information

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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

DiabetesDad.org

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 Communityhttp://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 ExperimentDealing with Diabetes Burnout – 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

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

Books by parents of children with diabetes

Raising Teens with Type 1 – by Moira McCarthy Stanford

Kids First, Diabetes Second – by Leighann Calentine

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.”

Patients learn something invaluable from each other

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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

Patients teach each other

 

July 22nd I’ve been invited, among many other esteemed diabetes bloggers, to attend a Roche social media summit. Roche, a major pharmaceutical in diabetes care, is, as they say, “looking to see how bloggers and companies can work together to provide accessible content to the diabetes community.” They are obviously seeing that more and more patients are talking to, learning from and informing other patients. 

Our benefit as bloggers is to see if we can help patients even more by providing even more information (I happen to know Roche sponsors many valuable informational seminars), and of course, it’s also a nice opportunity for us, who mostly blog alone in our homes or offices to get out (albeit the conference is in Indiana, Roche headquarters) and meet each other. 

The fact that patients are looking more and more toward other patients for information, guidance, understanding and support is occurring at lightning speed for several reasons:

1. The internet has made this possible

2. Too many general physicians and health care providers are not very knowledgeable about diabetes

3. Even endocrinologists have less and less time to spend with patients

4. A chronic illness like diabetes requires ongoing learning and support 

5. A self-managed illness like diabetes requires the patient is made exceedingly knowledgeable to care for themselves, including both the medical acumen and ability to develop emotional resilience

6. A chronic illness like diabetes requires you get the knowledge when you’re ready. A friend, who has type 2 diabetes, told me the first year of her diagnosis when free classes were available to her, her head was spinning so much she barely took in the information. Now a year later when she’s ready, it will cost her $1,500 to repeat the classes.

Last month I gave my diabetes presentation to a group in Jersey, City, NJ. I spoke to about 30 patients with about as many pharmaceutical reps also in the room sitting behind their vendor tables filled with brochures and promotional items like pens and tape measures. I know there was also at least one endocrinologist in the room, who is an exceptionally caring physician, and a few diabetes educators and dietitians, also exceptionally concerned for their patients–otherwise they wouldn’t have created this learning opportunity for the community.

At the end of my program, all the medical people congratulated and thanked me. Also, almost every pharmaceutical rep came up to me and told me what a wonderful program it was and how much more they understood what dealing with this disease is like. 

Then, as I was leaving, one young man grabbed me by the arms and said, “Please, I have to ask you a question. I only want to talk to you. You get it, you really get it! Not like my doctor!” 

I listened to his question and gave him my opinion, which I let him know was my opinion. I also offer him the sage advice that if he wasn’t happy with his doctor he should look for another. He said he had an appointment next week with, in fact, the doctor in the room that night. Then he asked another question, and then another. And when finally he was spent, his eyes were tearing with little droplets of gratitude.

We have an edge over doctors. We live it, and there is an immediate, invisible bond. It will be interesting to see what Roche is thinking, and I do commend them for thinking, and wanting to and reaching out to learn from us. It will also be interesting to see what I learn. I certainly know patients learning from patients isn’t going away and the more we can all reach out to others the better. 

The Secret – we create what we expect

Staring out the staff lounge window at the Cumberland Hospital in Fort Greene Brooklyn, just outside the auditorium where I am going to speak, I watch the traffic move along the Brooklyn Queens Expressway. Manhattan’s skyscrapers sit just beyond. I look up at the sky and whisper, “Thank you for where you have brought me.” This is my second presentation in my native Brooklyn. I’m not being so literal as to be citing Brooklyn in my thanks, but on the larger canvas of my life, to be doing this work.

I am critically aware in this moment that you never know what life has in store. Where you might be a year from now, five years from now. Surely, I never could have guessed I’d be standing in a hospital staff lounge about to speak to a group of fellow diabetics to motivate them toward better diabetes management. Not much more than five years ago I gave my diabetes management little thought. 

I always wanted to teach people that our lives are the projection of our thoughts,  and so we should plant the ones we truly want to reap, and accept our gifts and believe in our dreams. I just never knew sharing these ideas would have anything to do with diabetes. Honest, never.

When I speak to audiences I stress shifting their focus from the burden of diabetes to the rewards of doing the work — whether it’s to spend time with the grandkids, have more energy, pursue a beloved hobby or second career, or give back to the community. Most of diabetes education is about numbers, but the fabric of our life is mostly our thoughts and feelings.

Now at Cumberland Hospital I have finished my hour presentation and a woman raises her hand. After apologizing for coming late she says, “Maybe I missed this but how do you do it? How do you manage your diabetes so well?” The side conversations stop and the room quiets. Everyone is fixed on me. I begin listing all my tricks: my daily one hour power walk, using smaller plates, choosing more veggies and fiberous foods, sweeping most of the carbs out of my diet, and as the preacher in me takes over, the knowledge that my care is entirely up to me and that I don’t harbor a single doubt that I am committed to my best health.

18 pairs of eyes hold mine seeking answers from my passionate pontification. I wind down realizing how revved up I am. This rag-tag group of African American type 2 diabetics, one in a wheelchair, one with a cane, who when I began my talk seemed to only half listen, now applaud this slim white woman. I smile shyly almost shooing away their gratefulness out of embarrassment, yet I know they have been moved and the greatest gift I can give them is to accept their gratitude. 

This is what they don’t get from their doctor or their CDE — the understanding and insight of someone who lives where they live and has conquered the demons diabetes throws at them — at least most of the time. Moreover, many people I speak to are weighted down and held fearful by the loss of family members who have died from diabetes or those currently struggling with its complications. I try to bring them to a place where they can see that the possibility for their life is of their own making, not the legacy of their family members.  

Last year I learned something about my own family legacy. I interviewed my parents to get their take on what it was like for them when I got diabetes at 18. My mother told me something I never knew. “When you were diagnosed,” she said, “my heart broke.” Your father’s mother died in her fifties of a heart attack from diabetes and just before it happened they were going to cut off her leg. All I could think was this would be your future.” I was shocked to hear her say this, both because it was a revelation and by the information itself. But now that I’ve addressed enough audiences where diabetes is rampant in their families, I am grateful I didn’t know. 

Maybe if I had known what happened to my grandmother, who died before I was born, I would not have believed I could be as healthy as I am. Maybe I would have believed my grandmother’s fate would be my own, as so many people with diabetes similarly believe. Maybe not knowing allowed me to manage my diabetes and expect that if I did it well I’d be well. In fact, I believe diabetes can be a great stimulus to creating a healthier and happier life rather than falling victim to it and all the negative messages around diabetes. But maybe I would have been derailed on my way to these thoughts if I’d known what happened to my grandmother. 

I am pretty healthy after 35 years living with type 1 diabetes and I am resolute that I will continue to control what I can to have the best health that I can. It’s never been a secret to me that we create what we expect. Truth be told, that’s the good news and the bad. If you catch your thoughts more often and plant the ones you want to sow, I believe you can weight your fate for the better. Ah, see, I am teaching people just what I thought I would so many years ago.


 

Blood & Honey sheds new light on diabetes

I was impressed when I tripped over Jessica Bernstein in an article in DiabetesHealth magazine last month titled, “Blood & Honey: A Documentary.” 

Bernstein is a psychologist making a documentary film that deals with the psychological component of living with diabetes. As a type 1 diabetic herself, she says,  “I wanted to understand how living with the condition for so many years influenced people’s identity development.”

Like me, Bernstein has seen that diabetes researchers are focused almost exclusively on the negative aspects of diabetes. Few talk about how people can develop in positive ways as a result of dealing with diabetes. Bernstein began turning this realization and curiosity about how diabetes can have a positive, developmental affect into a film.

Her film, Blood & Honey is still partially in development and looking forextra funding. At present, the film features interviews with several people who live with chronic illness and explores what we can learn from them. There’s an African medicine man who shares that peple who live with chronic illness for many years in his culture are considered “elders,” the wise ones that communities draw upon in times of crisis. An interesting and far different slant than how seniors who live with diabetes here are regarded and hold it themselves. Here the primary sentiments attached seem to be:  blame, guilt and victimhood rather than wisdom and reverence.

Philosopher, Susan Wendell, who’s lived with chronic fatigue syndrome for 20 years also featured in the film believes people who spend years living with chronic illness learning how to deal with pain and suffering become valuable resources for others. “We don’t talk as much about the experience of illness as we talk about how to get over it, how to stop it, how to prevent it, how to relieve it, how you can be healthy if you really try,” says Wendell. “I think there’s an enormous body of knowledge among people who are suffering that is untapped and if we tapped into it we’d be less afraid and know better how to cope when something happens to us,” she finishes.

As producer Bernstein says,”Coming to see myself as someone with wisdom to share was a revelation.” When Bernstein tells someone she’s lived with diabetes for 36 years, as have I incidentally, they remark, “Oh, I’m so sorry.” Nobody she says has thought to pick her brain and learn what she’s learned about central issues of diabetes and life, like uncertainty, loss, change and mortality. 

Imagine just for a moment how it might change how you feel about yourself and living with diabetes if you regarded yourself as a wise one where every day your strength, courage, humility and dreams are tested, and you learn from such experiences. Would you see yourself differently, your capability and value?

Bernstein’s film has gotten off to an exciting start and is seeking funds. Learn more about the film by checking out her web site, and you can make a tax deductible donation through www.bloodandhoney.org.

A soldier in the trenches, me

Got a lot a livin’ to do

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As an A1c Champion, I am often asked to deliver educational/motivational programs to fellow people with diabetes.

Recently I gave a presentation in Buffalo, N.Y., where I was double-billed with a diabetes educator.  Her speech preceded mine, so I leaned back and listened. And what I heard was a solid forty-five minutes of A1cs, blood pressures, weight control, exercise, portion control, and carb-counting…in short, numbers, zones, and target ranges up the wazoo. Where is the humanity in this, I thought? Where is the patient in this? Where is the acknowledgement of the energy required to slog through each and every day? I saw my purpose–to talk about how we hold diabetes in our lives.

Taking the stage, I shared my own shock and fear upon diagnosis, my subsequent denial, and my early complications. The room quieted. I was, they saw, like them: a soldier in the trenches. I saw the landscape they saw; I tramp through the same dark forest; I look for cover when diabetes rains down upon me or drains me out.

“When you’re so busy testing every day,” I said, “reading labels, counting carbs, and calculating, 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, turning from silent witnesses into curious, involved participants. Someone had understood and acknowledged this piece of living with diabetes where their heart resides, along with their anguish and 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 also on the other side of our experience, where unfortunately many healthcare providers sit. People are dying–literally–to hear their healthcare providers address the emotional issues of living with diabetes and while it’s not providers’ fault, if you don’t live with a chronic illness that greets you every morning unrelenting, on a fundamental level in the messy arena of some messy emotions, many physicians and even educators lack the training to empower us to deal with the psychosocial aspects. 

We, however, are in the business of chronic illness. We have life adjustments to make, and we have precious little help to make them. So here are my recommendations: Learn all you can. Appreciate what you hold dear. Pace your efforts and forgive your mistakes. Keep the vision of your ‘best life’ ever-present. And spend more time doing what you love. While we’re living with diabetes, let’s not short-change the “living” part.

Here is another thought: How about the idea that we are “more than,” rather than “less than”?  After all, we do this whole other job called “managing diabetes.” I think we should be living with our heads held high, showing others the invisible “superhero” cape we wear. Call me crazy, and I’m sure some of you will, but I see a gift in diabetes:  that of a longer, healthier life than I probably would have had without diabetes, if I manage it responsibly.

After the program, people crowded around to thank me, and they were smiling. How often do you imagine someone leaves a diabetes talk with a smile? That’s where I want this blog to take you–to a place where you connect to your heart and spirit, a place where you may see that diabetes can bring greater meaning and purpose into your life. And, yes, there’ll still be room for ranting on the tough days. 

From Spokane to San Fran – On and off my pedestal!

Falling off my pedestal, ouch!

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Last week I flew out to Spokane to deliver my A1c Champion presentation at a health fair. 1,000 people were expected for the event. You know the local staff from Rockwood Clinic were working mighty hard to pull this off. And they did, until the last minute when an unexpected snowstorm blew us all just slightly off course. ‘

Champion riva’ at least got in from New York in time to enjoy a fine dining experience with three of the hosts the night before. ‘Champion Greg’ who flew out from Virginia, hit a snag changing planes in Cincinnati, and arrived 5 hours later. But Greg has never suffered for energy, or spirit, and joined us for dessert. By time we all left the restaurant and turned the three blocks back toward our hotel, we were walking into the beginning of a snowstorm.

Wide awake at 4 AM, peering out my hotel window, there was 3” of the pristine fluff on the ground already and falling flurries silhouetted against the street lamp across the street. At 7:30 AM when one of the hosts came to escort Cinderella (me) to the ball (health fair) I was hoping we weren’t going to crash en route due to the semi-blizzard conditions!

But ya gotta love Spokaners, at least 600 people managed their way to us and got a little learning. I addressed about 75 fellow type 1s and Greg commanded the auditorium filled with about 250 type 2s. Now, head in the clouds, I looked outside to see the snow had stopped and was actually melting at lightning speed. 

Cinderella next caught an economy coach seat to Oakland, CA for 5 days of play. While there, I had the delightful opportunity to lunch with the editor ofDiabetesHealth magazine. After we were seated at the Tadish Grill, great old seafood house by Embarcadero, he looked across the table at me with deep brown puppy eyes that said, “Tell me, goddess of diabetes, tell me all you know.” What more does a goddess need? So I listened to the sound of my own lovely voice as I gave him my pearls of wisdom.

I reminded him to re-ignite his passion to manage his diabetes by remembering what he loves doing and doing it, to think back to the “can-do” spirit he had when first diagnosed and being rewarded for his efforts with an A1c of 6, by realizing healthy eating is a ‘lifestyle’ not a ‘diet’ and to appreciate that diabetes is an every day affair, but manageable. It was clear he appreciated the wisdom that flowed from this goddess.

Then returning from lunch late that afternoon I tested my blood sugar and it was 170! Once empty of expletives, I calculated my carb load from lunch – ahi tuna and salad and one piece of bread didn’t add up to leave me as high as 170, particularly since I’d covered the bread with my Humalog. Hmm…was it that little bit of mango hiding in the champagne dressing on the tuna? Was it being out of my routine? I haven’t walked since I left New York. You know they arrest you if you do that in California. Mind you, with my ankle still in a boot cast, I’m not walking much, but I do manage to clop through a half mile or so at home. Was it the extra fruit I’d been eating at breakfast lured by California’s fresh and gorgeous bounty of strawberries, kiwis and melons that I never get in New York? I just didn’t know. OK, take a correction injection. Before bed I was 120, fine, I drop about 20 – 30 points overnight.  7 AM – 170 again! Yikes! How can I be going up overnight when I always go down? What’s going on?

I checked both my Lantus and Humalog vials to see if they were low which would mean I’d been using them more than a month. Nope, both nearly full. I scoured my mind for carbs I may have overlooked. Nope. I’m already over jet lag so those floating three hours that somehow have to be calculated for but no one really knows how, no longer count. “Shite!” as the British say. Having gone through the check list, there was nothing more to do but hope these readings were aberrations, watch what I eat even more closely, monitor for corrections and hope once I’m home all goes back to normal. I am happy to report so far mid-way into my first day back I seem to be back to my “normal.”

Pulling myself up off the floor, one should never put anyone else up on a pedestal for diabetes-care, because, I just about broke my neck falling off of mine. Diabetes is a daily affair, as I tell my audiences, our bodies are all different and there’s no such thing as perfect. And boy do I hate that because “perfection” is my middle name. The tireless, everyday calculations usually turn out the way I expect, but sometimes, they just don’t. Come to think of it, maybe it’s the canker sore I’ve had the last 5 days that’s raising my blood sugar… hmmm…could be, or the….or the……and on and on and on…………….

Be your own Valentine, you deserve to love yourself

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Last night I celebrated Valentine’s Day with 26 women and sent my husband away for two hours. I was the guest speaker, as the author of my new book,The ABCs Of Loving Yourself With Diabetes,at a Divabetic support group meeting. Max Szadek, showman extraordinare and founder ofDivabetics, the group that’s quickly growing from a grass roots movement to a national phenomena, chided me that the evening was my book launch. Looking around the somewhat disheveled room at the McBurney YMCA I chided back, “So where’s the champagne?” But it was my launch. I was launching my philosophy about viewing our diabetes differently, positively, to a real-live group of people with diabetes.

Divabetic, in its support group meetings, and now its national Divabetic “Makeover Your Diabetes”events sponsored by Novo Nordisk, brings diabetes education and empowerment to women, attracting them through things that make women feel good about themselves like make-up and hair styling, pedicures and tea tastings, with diabetes educators and coaches at the ready to answer their questions. You may think it crazy, but it gets women out, talking about their diabetes and smiling. Of course I took empowerment on a slightly different trajectory last night – we were going within.  

The ABCs Of Loving Yourself With Diabetes is about using your positive emotions to create a healthier and happier life. It’s pretty simple, really, if you focus on what you want and “rev up” your self-love, joy, courage and confidence, you’ll take the actions that will bring what you want into being, including greater health and happiness. Having greater health and happiness, you’ll perform your diabetes management tasks more easily, more regularly and more competently and confidently, with appreciation for how livable diabetes is, rather than being overwhelmed by anger and resentment.

Conversely, traditional diabetes strategies try to motivate better management through negative emotions – we are meant to fear complications and feel guilty when our management is not very responsible. Focusing on the negative, however, does not create sustainable positive actions. It doesn’t make you feel very good either. So I’m saying focus on what you love – about yourself, about your life, be grateful for the things you have and the people you care about, appreciate your courage and all you do living with diabetes, see yourself as a “warrior” not a “worrier” and be kind, patient and forgiving with yourself when you’re not on your game. Know you’ll do better tomorrow. Here’s something else, if you look, you can also find deeper meaning and purpose in your life through diabetes, and life can turn out to be even more rewarding, fuller, richer, healthier and happier than it was before you got diabetes. Don’t get me wrong – I didn’t say I’d ask to have diabetes, I’m just saying since we’ve got it, better to find something good about it and get on with life.

Sound crazy? I wondered before I presented this idea to my 26 Valentinas last night. In Divabetic tradition, we began by passing a pink boa around the circle and each person gets to glam a little while introducing herself. I asked everyone to say their name, how long they’ve had diabetes, something they love about themselves and one positive thing diabetes has given them.

Half the women said, “appreciation or humility.” One woman having trouble seeing, as her eyes are faltering now from her diabetes, said she has so much more compassion for people who have no sight or have a disability. Another said humility knowing she could have something much worse than diabetes. Women who got diabetes young said it helped them learn to be strong and responsible.  Many women said diabetes has helped them eat healthier or get regular exercise, and they were grateful for that. Some talked about the friendships they’d formed from the group. Many said they are helping family members with diabetes, which makes them feel worthy and valuable. Others said it just makes them more aware of life and not to take things for granted. It has heightened their senses.

I was surprised how easily most of the women reported something positive they’ve gained from diabetes. A few were stumped to come up with something, but no one was argumentative or thought I was full of sh_t – something I had wondered about before I began.

Then I read aloud the text from the letter A in my book, A is for Appreciating All the Special Things You Are and Have. The group was quiet for a moment after I finished reading and then they applauded and murmured heart-felt messages of solidarity. Then I read my personal message from the book, “To My Fellow Travelers” and several women, including me, were brimming with tears. A diabetes educator seated to my right and a health coach seated to my left both told me how wonderful, delightful and right-on the book is and how this message needs to get out there. A diabetes nurse came up to me at the end of the meeting asking if I will come and speak to her diabetes class about this.

For decades many pharmas have been selling their products through fear, entrenched in the belief that that’s the best way to get patients motivated to take care of themselves, and use their meters and meds. Much of the medical profession has also been under the delusion that fear and guilt is motivational. How long have we heard, “You have to take care of your diabetes or you’ll lose a leg, go blind, have a heart attack!” But this focus on doom and gloom many doctors and pharmas have used has not inspired better management, we know that statistically, but it has increased denial and depression among the diabetic population. 

Now instead, imagine the approach to diabetes management was to have you focus on a picture of the life you want to live and believe you could have it. Imagine hearing that you should treat yourself with kindness and forgiveness when you have an off day, and that you are strong and capable enough to do better as you learn and practice. Imagine that you are encouraged to live the biggest life you can dream, that you deserve it and that you can have it with proper care. Wouldn’t you move heaven and earth to stay healthy?! You bet you would! 

The belief that patients can live a happy and healthy life is far more motivating and would sell far more meters and meds than the fear of complications, because we’d do everything to bring our desired life into creation. Moving toward what you want has proven to yield more success and be more empowering than avoiding what you don’t want. Excited, hopeful patients would actually use their meters and meds. Hmmm..that means companies would be selling more meters and meds. Sounds like a win/win to me. You can see a modified version of this attitude is actually being adopted by Bayer and Novo Nordisk. Bayer’s latest round of TV commercials has a more upbeat tone. Novo Nordisk, the world leader in diabetes care, launched an initiative in 2005 called, “changing diabetes,” where they’re bringing together innovators in diabetes education, treatment, reimbursement and policy to shift attitudes and change the way patients and health care professionals think about diabetes. Hallelujah! A beginning.

It’s time to take that message to every medical professional’s office and every patient: focus on the best vision of your life, energize your positive emotions and you will create more health and happiness – and better diabetes management. Why? Simple, you will see better management as the foundation that supports that fantastic life. And here’s a second message: Sometimes diabetes is a pain in the neck, frustrating as heck and you wish you didn’t have it. I know. But here’s what’s also true, if you really look, you can likely find something positive you’ve gotten from diabetes. The two are not mutually exclusive. Both can co-exist. So doesn’t it make sense to find something positive about having diabetes since it’s not going away anytime soon?

I have also never forgotten what the actor Jim Carrey did when he first got to Hollywood. He drove up into the Hollywood Hills and looked out over the blazing lights of Hollywood and visualized a check made out to him for $20,000,000 for making a movie. Ten years later it happened. I believe last night was a mini demonstration of what’s to come. And it will start where diabetes lives, in us, not in the white coated offices or pristine HQ campuses. So business and healthcare think the way they think, but on the ground, those of us living with diabetes are ready for change. Hmm… sounds like my political stump speech.

Last night, on Valentine’s Day, I celebrated loving yourself with 26 women. It was one of the best Valentine’s Day presents I’ve ever been given. Thank you Max.

There is a champion within each of us

It’s been a busy week with Diabetes Day having fallen this past Wednesday. I’ve been involved in various activities around town, and like my fellow A1c Champions, been giving our motivational presentation to fellow diabetics. Yesterday, not far from my home, I spoke to a roomful of type 2 patients. The good news was almost everyone knew this is Diabetes Awareness Month. The bad news was very few knew what an A1c is. You’d be amazed to know just how few people with diabetes know how to manage it.

I was speaking at a medical center in Bedford Stuyvesant, a lower economic area of Brooklyn with signs of gentrification spiritedly popping up amidst the shuttered buildings and bodegas. Most of the patients who attended have had diabetes for several years and one patient was a newbie – diagnosed just two days ago, and he was reeling. While I know full well the initial response to a diagnosis of diabetes: shock, loss, grief, anger, shame, fear…he felt he’d lost his life. I acknowledged his feelings and then said, “You know, there’s another way to look at this. You didn’t just hear a doctor say you have terminal cancer. Diabetes is manageable once you know how. Now it’s your job to find out how and take the steps necessary.”

I wish I had also remembered to tell him, and all of them, about a news story I had seen some months ago on TV. It was about a one-legged black skier training for the Special Olympics. His story is remarkable, not only because he has become a masterful skiier, but because he came from the neighborhood where I was speaking yesterday. Years ago as a teen he was caught in a neighborhood shoot-out. A bullet cost him his leg, and three months of his life as he lay in a coma.

When he awoke, this active boy couldn’t participate in the usual pick up game of basketball, but one day he tried skiing and loved it. So with a dream and much determination, he moved away from his family, friends and home to Colorado to train for the Special Olympics.

Today he is part of the Special Olympics training program. He works as a sales rep at Home Depot and gets time to train. I was awed by this young man. Not just because he can stay erect on one leg whipping down a mountain, but because of his relentless positive spirit, optimism and good will. 

When not on the slope or in Home Depot’s paint department, he’s touring — influencing kids to stay in school and spreading his good cheer and message about what you can accomplish when you put your mind to it. 

I really wish I had remembered to tell my diabetes group this story. A man, from just where we were gathered, had turned his life around after tragedy struck. They would have seen how much is possible, how you can come through life on top — including living with diabetes — when you put your mind to it. And that goes double for my newbie who’s just starting to wrap his hands around diabetes. Right now he can choose to look at his diabetes as a terrible thing or a stimulus for getting healthier, and also help his family members who’ve all been “suffering” with diabetes for years. 

At the end of the TV segment the reporter asked the skiier how he stays so positive. He said, smiling, that when he was a kid his grandmother told him something he’ll never forget. She said, “No matter what, you’re already a champion because of who you are, and the influence you have on yourself and others.” I think we’d all do well to heed his grandma’s words. 

Know that there is a champion within you and that your champion will carry you as high as you aim to go. Then when you get up there, take a look back, reach out your hand and help pull someone up who’s struggling below you. 

Speaking at the ADA Health Expo, and what I learned

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I spoke in front of 60 people twice in the last two weeks at the American Diabetes Association Health Expos — first at the Jacob Javitz Convention Center in New York City, and yesterday at the Convention Center in Tampa. I was a key-note speaker on the Main Stage of the Exhibition Halls sharing healthy tips and my personal tricks managing diabetes. It’s enormously rewarding for me to give these presentations: I love to help, to share my experience and, I guess, be on stage. What few people know, although at times I bring it into my talk about controlling blood sugar, is that my blood sugar often spikes just before I start from pre-stage jitters. Ah, the price of fame.

But that is not the nut of this story. Rather, yesterday at the Tampa Expo after my presentation, I sat in on a CDE’s workshop about ‘Everyday Dealings with Diabetes.’ During the break, I talked with another participant about “burn out.” She is a teacher whose days are so fragmented that she can’t seem to eat and do her exercise as well as she’d like. She also recently had gastric bypass surgery and lost a huge amount of weight. While she generally eats much healthier than she use to, and her need for medication has disappeared, she still has to carefully watch her weight, her diet and her activity, or the benefits could all go away, and her diabetes will return. “I’m constantly “fighting” my diabetes,” she said, exasperated.

My antennae went up immediately. If she’s “fighting” her diabetes, if that’s her attitude, focus and feeling, then she’s going to experience burn-out on a fairly regular basis. Doing battle is exhausting. Further, we typically see a fight as having a winner and a loser. From all she said, I imagined she casts herself as the loser. More tiring still.

“Can you change your attitude?” I asked. “Don’t think of fighting your diabetes. Think, instead of what diabetes has given you. It’s caused you to lose a lot of weight, eat better, start walking and now you have this trim, energetic body. You may not do your best all the time, but you’re doing much better than you ever did before.”

Her blue eyes flashed with surprise and understanding as she got it. She said, “Wow, you’re absolutely right! I’m so glad you said this. Thank you.”

So often we forget in all the work diabetes takes why we’re doing the work, or what we’ve gained by doing the work.

A few hours later while going through security at Tampa airport, I was still wearing my speaker’s badge from the Expo. If I’m honest, it was intentional: I was curious to see if anyone would approach me and start talking about diabetes. I thought maybe I could help someone, even outside the Exhibition Hall.

Well, who noticed my badge but the TSA security officer! As my suitcase made its way through the screening machine, the operator noticed something suspicious. So Bob, according to his name plate, politely asked if he could open my bag. As he did so he noticed my badge. Now, I thought, I’m dog meat! He’ll look for my syringes and this will start a whole episode. Bob said, “So, you were a speaker at the ADA Health Expo?” “Yes,” I said, not wanting to engage. “Hmm… “ he said, “Interesting.” “Why?” I queried, forgetting my disengagement strategy. “Well,” said Bob smiling, I have diabetes.” And so it began. As his white-gloved hand found the menacing granola bar in my case, Bob told me about his A1c, his diet, and how he’s still gotta lose a few pounds but he’s working on it.

We chatted for a good five minutes off the line, and I was smiling all the while thinking here I was helping the TSA security officer! Who woulda thought? I also realized, as I walked to my gate, with Bob wishing me a safe flight, that when you stay alert and open and in a space of gratitude, you can help anyone, anytime, anywhere — particularly if you wear a sign saying, ‘Diabetes Speaker!’