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.”

You have a great diabetes team and resource in diaTribe

 

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diaTribe is the consumer monthly newsletter from Close Concerns.com, a grassroots company making patients, researchers, clinicians and pharma smarter about diabetes to improve how we live with diabetes. 

Close Concern’s Founder, Kelly Close, guides each issue of diatribe as Editor-in-Chief, and Adam Brown, diaTribe’s Managing Editor, both have type 1 diabetes. Several other contributing editors do as well.

Each month or so, the latest issue pops into my inbox covering a wealth of knowledge on diabetes, and relatedly, obesity. I get to read about the newest medicines, devices, studies, trials, posts from fellow diabetes advocates and insightful interviews with industry leaders, as the team criss crosses the country attending medical and health conferences. 

Perhaps, particularly as people here try to get their life back on track after Hurricane Sandy, and I am reeling from election fatigue, reading these two stories I found myself grateful, and invigorated by a device advance in the field, and the wisdom and humanity of one of our great endos, Dr. Anne Peters. 

Dexcom’s G4 Platinum CGM – A review of Dexcom’s new improved continuous glucose monitor

diaTribe Dialogue – An interview with the exceptional Dr. Anne Peters. 

If you’d like to get more informed, you can sign up for your free copy of diatribe here

 

Make yourself a diabetes drawer

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I just thought as I emptied another two bags of syringes into my kitchen drawer that if you don’t already have one, you ought to have a designated diabetes drawer. A drawer or a cupboard devoted just to diabetes supplies.

Mine is in my kitchen, second drawer down, on the right. When I began interviewing people with diabetes my very first interview was with a young couple who had a three year old with diabetes. She showed me around their apartment and pointed out the supply closet where they stored only and all their son’s diabetes supplies. “It makes it much easier to have everything in one place,” she told me, “and to keep track of what we’re running out of and need to reorder.”

I keep my boxes of supplies in my kitchen pantry closet, top shelf and then move things into my diabetes drawer to have a current stash to draw from.

You can see what’s in my diabetes drawer right now: syringes, glucose tablets and sweet tarts, lancets, vitamins and my Extend Bar. Oh, yeah, somehow take out menus seem to nestle in there too. 

It’s a good project, if you don’t already have a diabetes drawer to create one. Trust me, it makes it all the easier to reach in one place to get the daily stuff you need. 

The Diabetes Resource web site

What’s a blogger to do when she’s going to be away for a few weeks and can’t post except from home? Well, one thing is I’m working on solving that problem, but not in time for the next three weeks I’ll be away. So, I will leave you with this post and the next that give you something to do. Of course, you have to promise to come back the end of the month.

Take some time to check out my fellow blogger, Gina Capone’s, fabulous new web site, The Diabetes Resource. This one-stop, convenient and easy to navigate site covers everything related to diabetes; from camps to monitors…professionals to articles and chats, and it is updated daily. Remarkably, this is the only site that puts the whole spectrum of diabetes resources in one place. 

Check out:

1. A directory of everything under the sun related to diabetes, i.e. magazines, pregnancy, celiac disease, dieting, diabetes drug companies, home delivery services and on and on and on and on…………..

2. Events happening in your neighborhood and around the country

3. A chat room every Wednesday night

4. Great articles 

5. Advertising

“I developed The Diabetes Resource to take the hassle out of searching the web and navigating site after site to get the critical information you need when you need it,” said Gina, herself a type 1 since the age of 25. “I tried to think of everything I could that related to diabetes and then brought those resources together at one location, one web site.”

“The Diabetes Resource is the first web site dedicated solely to consolidating and bringing organization to all of this information and I welcome that,” said Kitty Castellini, Founder and President of Diabetes Living Today™, a popular radio program dedicated to discussing issues pertaining to diabetes.  

So, take a look. It should keep you busy and allow me to feel less guilty.

Secrets to a longer, healthier life

Intrigued already aren’t you? This is just one of the 15 self-assessment quizzes and tools for better managing your health and diabetes on the MayoClinic’s web site. The Secrets quiz asks just 10 questions and while I can tell you the answer doesn’t involve an anti-aging pill, it does involve some basic lifestyle changes– but the quiz will help you personalize what those changes are for you.

I’ve often used the MayoClinic web site as a valued resource for information but wasn’t aware what a plethora of diabetes tools and information it offers. It was actually meeting Julie in Queenstown, New Zealand, while on my recent travels, that I learned more about the MayoClinic’s dedicated diabetes work. Julie, who has type 2 diabetes, participates monthly in a research focus group with the clinic so that they get a fuller perspective on patient issues. 

While diabetes blogs and social networks are mushrooming like a fungus, it never hurts to go back to basics and review treatments, management strategies, coping, and ask questions of specialists from a well-trusted resource such as this.

The ABCs Of Loving Yourself With Diabetes Does Its Work

‘A’ is for Appreciating All the Special Things You Are and Have

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 Last Saturday at the American Diabetes Association’s Expo in the Jacob Javitz Center here in New York City I stood beside Kevin, the CEO of Eat Right America, at their booth. Kevin had been given a copy of my book, The ABCs Of Loving Yourself With Diabetes, by someone who may do some publicity for the book next year as there are some tie-ins with Eat Right America. 

Eat Right America offers a nutrient-dense diet created by Dr. Joel Fuhrman and if Oprah ever gets a hold of him, he may be her next Dr. Oz.  The diet has great impact for living with diabetes: it emphasizes making most of your diet vegetables, beans and legumes with some fruits, whole grains, and lesser amounts of lean meats, low-fat dairy and healthy fats. As a result, people lose weight, blood sugars go down and related conditions improve or disappear. My book brings to the party the ability to grab a healthy handle on your emotions to weather the daily trials of diabetes; it helps you rev up your emotional strength, stamina and resilience which leads to better management and a happier, more productive life. The first thing Kevin told me upon meeting me was that he’d  given away his copy of my book to a neighbor whose daughter just got type 1 diabetes at age 10. He told me how grateful the woman was and how good it made him feel watching her thumb through the book. She was like a camel who’d been dying of thirst and led to water he said.

Later at the Expo I ran into Ralph, a sales rep from Sanofi-Aventis, manufacturer of Lantus and Apidra insulins, who has attended several of my Sanofi-sponsored A1c Champion presentations in Brooklyn. Since I still had a few of my books in hand I gave him one with the directive, “Ralph, see what you can do to get Sanofi to buy my books and distribute them to patients. It wouldn’t hurt either to get medical staff to read them.” I chuckled and Ralph said he would do his best.

Ralph called me this morning and said he gave my book away at the Expo. Two give-aways in one day! A woman came up to him and began looking at the book and was so taken with it he felt compelled to give it to her. Funny, as he was apologizing I thought, how great. Now someone who can use my book actually has it in her hands, and he got to witness a demonstration of the book’s ability to touch and move people. As a writer you so rarely get to know whether anything you do really impacts people, to learn that it does is its own reward.

What actually prompts this story is it follows a phone call I received just the other day from Nico, a sales rep from Edgepark, a medical supplies company–they supply meters, test strips, syringes and lancets. I’d met Nico at the American Association of Diabetes Educators (AADE) conference in August and asked whether Edgepark covered lancet discs for the Pelikan Sun lancing device. Along with updating me whether Edgepark covers the discs (not yet as my health insurer, Empire, is reviewing the device) he asked if I was acting as a diabetes resource in the community as he often encounters medical professionals who might have need of me, particularly to talk to patients about the emotional aspect of managing diabetes, and, what made him think to ask was shortly after meeting me a woman came up to him at the AADE conference with my book in her hands.  

So no matter how this book gets around, the mere fact that it does, is a gift–not just to those whose hands it falls into (or so I hope)–but to me. Like the camel I’m still drinking it in.

See doing the work as the road to what you truly want

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A work out for your head

In a book I’ve just read, The Diabetes Lifestyle Book, by three PH.D.s Jennifer Gregg, Glenn Calaghan and Steven Hayes, they examine from a psychological perspective, how we can commit to achieving better health. They employ something called, “acceptance and commitment therapy (ACT)” to move patients through the obstacles that get in their way and talk about how you can overcome your own barriers. If you’ve a mind to do some mind-work, this is a good read.

Here’s an example of mind-shifting from their book– it’s a pretty simple, a gentleman had trouble committing to exercising. He, like many people the authors say was using “weather” as an excuse not to exercise. Ted is fifty-five with type 2 diabetes and cardiovascular complications whose doctors are asking him to exercise. Ted made it clear to the psychologists that he would only walk for exercise and that he wouldn’t walk in the rain under any circumstances.

The authors asked Ted how firm that decision was for him on a scale of 0 to 100. Ted said 100. Wow, that’s pretty firm! Then they asked Ted why he was coming to their clinic. He said he’d been sent by his doctor so he could better manage his diabetes. Then they asked Ted why would you want to better manage your diabetes? Ted said somewhat confused, “to improve my health.” The authors then asked Ted whether he thought he could do things to improve his health even if they were difficult, and Ted said “of course.” The authors then asked Ted “So why would you be able to do difficult things?” and Ted said, “because I want to live a long life to to see my grandchildren, whom I have a special bond with, grow up.

Hmmmm….O.K. Now the authors asked, “What if in order to see your grandchildren grow up you have to walk in the rain?” Ted thought a minute and then said, “I think I need to get an umbrella!” Eureka! The authors then asked Ted again how firm his belief was on a scale of 0 to 100 that he would not walk in the rain. Ted did not even pause before saying “about a 10.” So what happened? The psychologists linked what Ted REALLY wants — seeing his grandchildren grow up — with how he could get it.  That’s what was meaningful to Ted, as opposed to the abstract notion of just being healthier if he exercises.  The book is filled with exercises, examples, linkages and stories like these to help you see where you can make stronger links for yourself, more tightly connected with your desires and values, to better manage your diabetes.

When I give my motivational presentations I always ask people, “Are you spending more time focused on the everyday tasks of diabetes or what the tasks are giving you – better health, a longer life, more energy, more time with the grandkids, etc? It’s important that we see the benefit of all the work we’re doing. Look to the life you truly want to be living and see your diabetes work as the road. It can be smooth or bumpy, depending upon how you regard it.

While you do the work shift your mind from looking down–it’s hard, takes time, hurts, not fair, why me? to up–it gives me more energy to travel, I can wear that great dress at my son’s wedding, and boy, I’m pretty amazing handling all this! You can only start where you are, so start there and don’t resent or beat yourself up that that’s where you are. Enough said, and keep Ted in your thoughts. Right now I imagine he’s racing down the street in the drizzle with a smile on his face because his grandkids are waiting at the end.

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.

My book featured on DiabetesMine

UnknownDiabetes can be a blessing in disguise – it’s how you see it

If you haven’t noticed, although I imagine that would be hard given I think I’ve plastered the news all over my site, I’ve published a book – The ABCs Of Loving Yourself With Diabetes

Today my book is featured in an article titled “A Shot of Joy” on DiabetesMine, an award-winning diabetes blog written by very smart, very informed Amy Tenderich, who’s also a type 1 and self-admitted cynic. Here’s a tiny snippet:

After just a few pages, I knew I would read this book cover to cover and cherish it for many evenings to come.  What a wonderful little ode to self-acceptance and motivation.  Like a skilled quilter, Riva has somehow managed to patch together poetry, self-help, and diabetes advice into an irresistible pattern.

My recommendation?  Take a little quiet time, on an off-day. Curl up on yourcouch, with some of your favorite soothing music, and read this book from A to Z.  It won’t take you much more than an hour, and if you’re not 100% the cynic, you’ll find yourself (not cured by any means, but) refreshed and smiling.”

When cynics can be won over, it makes me all the prouder. Thank you Amy.  

Note – The ABCs Of Loving Yourself With Diabetes is intended for all ages: seniors, boomers, teens, tweens and in-between. Available at Amazon.

One more note – The book is priced at $19.95 because a significant portion of the purchase price is being donated to diabetes research.