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

A1C Champions is looking for you

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Are you successfully managing your diabetes? Are you interested in helping others do the same? Then you may be interested in being a peer-mentor as part of the A1C Champions group

There are 70 of us A1C Champions who live across the country and go across the country – or stay mainly in our local area – giving various presentations to help our fellow patients take better care of themselves, and their diabetes. That’s me above giving an A1C program. I’ve been doing it for 5 years and I find it enormously fulfilling work. 

VPR Communications, the group that trains us to do this work, is actively looking for more Champions. Here are the criteria: 

1) You must use insulin

2) Have an A1C less than 7%

3) Be at least 21 years old

4) Have a strong desire to help others

If interested, you can see more about the program on the A1C Champions web site. If you’re ready, or have any questions, please contact Becky Lodes at becky@vprpop.com or call 855-A1CHAMP (855-212-4267).

The power of the A1C Champion programs is that patients hear how to better manage their diabetes from a patient. Often they will have heard similar information from their health care providers, but when they hear it from you – and they know you live it – they hear it in a completely different way. 

The programs also allow you to share your story, your experiences, what it’s been like for you to live with diabetes and what makes you successful. 

You often become just the missing piece that moves someone to do something for their health that they’ve been putting off for years. 

I’ve given more than 50 programs, sometimes to ten people, sometimes to 200, and somehow I never tire of it.