education

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

Life with Diabetes Update 2014

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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.”

ADA 74th Scientific Conference

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The American Diabetes Association just held it’s 74th annual conferencein San Francisco.

16,000 medical professionals, patients, exhibitors and trade people attended. Of course I would have made 16, 001 but I was in Phoenix attending my peer-mentor annual conference, the A1C Champions.

So, while I wasn’t in San Fran, I’ve been following the research, science and encouraging shift highlighting patient voices posted on various web sites. 

Here’s are three if you want to catch up along with me:

Healio Endocrinology

Medscape

Diabetes Mine

“Fed Up” a movie about childhood obesity

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I have never been a fan of Katie Couric, particularly. But last night my husband and I saw her film,“Fed Up.” and appreciated how she is bringing to light childhood obesity. While everything I heard in the movie I already know, it was still great to hear it again. 

The plot of this documentary is the pure evil perpetrated on us by big food companies. Their mission is to make money for stockholders and they do it at the expense of our health. They push products out into the marketplace that are unhealthy but earn their shareholders megabucks. Featured in the film are the experts who have for decades alerted us to this situation includingGary Taubes, Dr. Robert Lustig, David Kessler and many others. 

The devil is sugar. We eat it by the bucketful and it is hiding in practically everything we eat.  While we know it in its natural form of table sugar, it’s also in bread, pasta, rice and hidden in foods like ketchup, yogurt, spaghetti sauce, Hot Pockets, Pop-Tarts, waffles and on and on, well, it’s just about everywhere, including the majority of our processed, refined food products. 

It’s truly a travesty and tragedy that the American government has sold itself out to the food lobbyists. How short-sighted is it that we allow people to eat foods that down the road will cost their health and their lives. And we will all be paying for their healthcare. The obesity rate has risen in parallel with the removal of fat from our food when we once thought fat was the culprit for obesity. But, you know, it is not. And, as everyone would like you to believe, “a calorie is a calorie,” it is not. Different foods work differently in our bodies. The biggest take away is unused sugar turns directly into fat in your body. A calorie in is not a calorie out. Start eating healthy fats and stop eating refined, processed food-like substances as Michael Pollan will tell you. 

The real tragedy is when you see what it is doing to our young people. When I went to school lunch in the cafeteria was homemade meals and my favorite, tuna fish sandwiches. Today, kids at school get 80% of their lunchtime food from fast food franchises – Pizza Hut, Taco Bell, McDonalds …they are truly up against it to find a healthy meal. Shame on the American government. 

Food manufacturers know the earlier they hook a child on their food, they will form a lifelong customer. Thus, TV commercials and characters like Ronald McDonald are marketed to kids. It is criminal what we allow food manufacturers to do and put in the marketplace. It is simply immoral. It is costing all our health. To live healthy in America you have to be extremely vigilant.

If you’re lucky enough to have an independent theater in your community, see the film. Then make a pledge to eat healthy – real foods. Stuff that doesn’t come from fast food restaurants or out of bags or cans. It’s not more expensive to buy a whole chicken and some vegetables to cook for dinner, than fast food chains would like you to believe. 

I’ve said it before: food is medicine. Eat healthy, feed your family healthy, real food and let’s not let the big food companies steal our health. This is our generation’s battle just as tobacco was the battle before us.

Help get Nagbot on his feet – a virtual caregiver from Lifebringer

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Herb Meehan lost his vision in one eye due to diabetes. “I was a TERRIBLE diabetic,” he wrote me. “I didn’t test regularly and when I lost my vision something inside me snapped.” Herb’s snap caused him to spend two years creating an intelligent software and voila Nagbot was born – an avatar buddy currently helping hundreds of people with diabetes. 

As Herb wrote, “I created Nagbot because way too many diabetics need encouragement to test regularly. I engineered this avatar into the application to be caring, like my wife, because not everyone has someone like that to help them.” This cute little avatar Nagbot reminds people to test, stores blood sugar and a1c results, gives positive reinforcement and as Herb says, is just bad ass. 

Below is some more info from Herb, including a bit of his story, and, Nagbot’s future is hanging in the balance on Herb’s Kickstarter campaign that you can be a part of. 

Message from Herb

My name is Herb Meehan. I’m a type 2 diabetic and the creator ofLifebringer, a free diabetes management tool available to anyone with an internet connection. 

Lifebringer is a web application that is at home on your computer, tablet, and mobile device. Lifebringer goes beyond simply storing data. It’s a diabetic journal, blood sugar test reminder system, test strip inventory manager, report viewer, and encourager. 

What makes Lifebringer unique is Nagbot. Think of Nagbot as your virtual caregiver. Nagbot helps you remember to test. Nagbot talks to you in plain English (no medical jargon used). And if your blood sugar is too low or too high, Nagbot suggests what you should do. If it’s within range, Nagbot happily encourages you to keep it up, as in keep checking. Nagbot also sends reminders and reports to you if you ask him to.

My Story

I was diagnosed back in 1999 and was on oral meds for the first few years. I eventually had to ditch the pills and go with insulin to manage my diabetes. It wasn’t enough though. A few years ago, I lost vision in one of my eyes due to complications with diabetes. Simply put, I didn’t do enough. After that event, I became the model diabetic. My wife and I began eating healthy, home-cooked meals, and I now test regularly.

Why we don’t like diabetic journals

Let’s face it – data entry sucks. One of the chores of using a diabetic log is that data input isn’t fun. Lifebringer is easy and streamlined. Lifebringer doesn’t just collect your blood sugar information but will also forecast your A1c (a snapshot of the last three months of your blood sugar control). Here’s a look:

We have turned to Kickstarter to fund this dream and we’re hoping to continue to help everyone else with diabetes.  Please take some time to meet Nagbot.  My wife, Maryam, and I would be incredibly grateful if you would and also share or tweet this news. 

Travelin’ Tips with Diabetes

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                                      At a garden in Tokyo with friends on a rainy day

Last week I received an email from the American Association of Diabetes Educators offering 8 travel tips, “Have Diabetes, Will Travel.” I thought I would post them.

I also asked AADE why there’s no mention of how to adjust your dose if you take a long-acting insulin like Lantus or Levemir. You’ll find that recommendation at the bottom after we had an email exchange.

Have Diabetes, Will Travel

No Reason You Can’t Enjoy Seeing the World – You Just Need to Plan Ahead 

Just because diabetes is your constant companion doesn’t mean you can’t enjoy traveling, whether traversing America in an RV or flying to the far reaches of the globe. Ensuring you stay healthy and keep your glucose levels on an even keel does require a little bit of organization and planning ahead, though.

The American Association of Diabetes Educators suggests a plan of attack for ensuring your next travel adventure is safe and successful.

1  Over-pack your medications – Gone for a week? Pack two weeks’ worth of your diabetes medications in case of travel delays or misplaced supplies (insulin, syringes, testing strips, extra batteries for your pump, a first-aid kit, glucagon emergency kit, etc.). If you use a pump, ask the company if you can bring a backup in case yours fails. Have a prescription from your doctor for insulin or oral medication in case of an emergency.

2  Protect your supplies – Keep your medications and supplies close at hand and don’t put them in checked luggage or in the trunk, where they can be exposed to harmful extreme temperatures (too hot or too cold). If you’re flying, keep them in the original packaging (so no one questions they’re yours) in a bag separate from your toiletries, as requested by the Transportation Security Administration (TSA), which manages airport security. Don’t worry, the TSA allows you to go over the 3.4 liquid-ounce carry-on limit for diabetes medications and supplies.

3  Identify yourself – Wear your medical bracelet or necklace that notes you have diabetes and take insulin (if you do). Bring a doctor’s note that explains you have diabetes and lists your medications, as well as a prescription in case you need more. Carry a health card that includes your emergency contact and doctor’s name and phone number. Learn how to say “I have diabetes,” “sugar,” and “orange juice, please” in the language of the country you are visiting.

4  Carry snacks and low blood sugar treatment  – Low blood sugar (hypoglycemia) can strike any time and food access during travel is unpredictable, so be sure to bring plenty of snacks such as peanut butter crackers, granola bars and  trail mix as well as glucose tablets or gel.

5  Simplify flying – Tell the TSA folks that you have diabetes (they’re used to accommodating people with health issues).  Visit http://www.tsa.gov/traveler-information/passengers-diabetesbefore your trip to learn about current screening policies. If you plan to inject insulin while flying, be forewarned – the pressurized air can make it more challenging to draw up your insulin, if using a vial and syringe, so be extra careful not to inject air into the bottle.

6  Test often – New foods, increased activity and different time zones can throw your glucose levels out of whack, so be sure to test frequently, including before and after meals. If you take insulin, keeping your levels steady can be tricky when changing time zones, so make a plan to adjust your schedule for injecting. Before your trip, see a diabetes educator, who can help you with this challenging process.

7  Favor your feet – Wear comfortable well-fitting shoes and socks at all times – never go barefoot.  Check your feet frequently, especially after a hike or long walk.  Feet and ankles often swell during flights so consider wearing light knee-high compression stockings (20-30 mm Hg) or bring thinner socks to change into if your feet swell.  Wear a shoe that can be loosened if that occurs. Pointing and flexing your ankles during a flight can improve blood flow in your calf muscles and decrease swelling as well as lower the risk of blood clots.

8  Prepare for a health emergency – If you need medical treatment, ask your hotel to recommend a local doctor who treats diabetes. Prior to an overseas trip, get a list of local English-speaking doctors through the International Association for Medica1172l Assistance to Travelers at http://www.iamat.org/.

The secret to any successful trip is to take plenty of time and plan far in advance of your departure – and that goes double when you have diabetes. For more information about how a diabetes educator can help you plan your next trip, visit http://www.diabeteseducator.org/.

Sources: Centers for Disease Control and Prevention (CDC), American Diabetes Association and Joslin Diabetes Clinic

Regarding adjusting your long-acting insulin dose from AADE: “There are adjustments that many people make but we would not recommend any specifics. It’s better to have your HCP guide you. Ask your HCP how to adjust your background insulin to account for the shortened day.

You may also want/need to do extra blood glucose checks during your trip for information as you make insulin adjustments, as well as to account for possible variations in food and physical activity while on your trip.”

I concur. I’d also add, if you’re an old hand and feel confident about adjusting your dose, do a little experimenting. First, use your common sense. Second, keep checking:

If your day is going to be shortened, for instance, by 6 hours, take 1/4 less your normal dose. If your day is going to be lengthened by 6 hours, add an extra quarter. I take that extra quarter before I go to sleep after I’ve arrived somewhere because I take my Lantus at 9 AM. Then I start my usual dose again when 9 AM rolls around wherever I am. And yep, keep checking!

That’s what I do but in all things diabetes what works for me may not be right for you. Mind you, I only take 8 units of Lantus a day and I’m insulin-sensitive rather than insulin-resistant.

Could you have diabetes or pre-diabetes? Check your risk rate.

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1 in 4 of the 26 million people walking around with Type 2 diabetes don’t know they have it. And most of the 80 million people with pre-diabetes have no idea their blood sugar is higher than normal and damaging their body.

If diabetes runs in the family, you’re overweight and/or not very active, you’ve got the three dominant risk factors for Type 2 diabetes. 

Take the American Diabetes Association’s Risk Test right now and find out if you’re at risk for type 2 diabetes. Just answer a few simple questions about your weight, age, and family history. 

If you find you are at risk, make an appointment to talk to your doctor and get a fasting blood sugar test immediately.  

If you’ve never had your blood sugar tested, it’s a simple blood draw at the doctor’s office or a lab. That’s all it takes. 

Pre-diabetes, or what I call Stage 1 of Type 2 diabetes, is when your blood sugar is higher than normal, yet not high enough to diagnose diabetes. But you want to know if you have Stage 1 diabetes. 

With higher than normal blood sugar, many of the complications of full blown diabetes like vision problems and neuropathy – a tingling or loss of sensation in your feet – may already be occurring in your body.

And within five to ten years, many people with Stage 1 diabetes go on to get full blown Type 2 diabetes.

If this simple risk evaluation, marks you at risk do something about it. Get a blood test, then find out how to start eating healthier, getting more activity and you may need medication.

The sooner you know, the sooner you can delay and/or prevent diabetes and that’s something you definitely want to do.  

AADE’s 2013 Annual Conference report

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interaction with audience

I returned Saturday night from the annual conference of Diabetes Educators, this year in Philadelphia. While there were fewer educators there than in year’s past, around 2,900 rather than 3 or 4,000, probably due to budget cuts, it was a pleasure for me to see so many people I know.

There were many from the DOC (Diabetes online community) including Cherise Shockley, Scott Johnson, Manny Hernandez, David Edelman, Amy Tenderich, Lee Ann Thill, Kelly Kunik, Kerri Sparling, Bennet Dunlap, Haidee Merrit, Hope Warshaw and more, where do I stop? 

Cherise and Scott led a DSMA twitter feed evening where everyone was answering patient call in questions. And all these guys I’ve just mentioned have diabetes blogs – just google them.

There were people from industry I always like to see including Rob Muller from Roche, Andreas Stuhr and Laura Kolodjeski from Sanofi, reps from my own A1C Champion group, Anna Floreen and Bill Woods from Glu.org…and on and on.

There were 1,000 exhibitors in the exhibition hall. And there were educators. An impassioned group of professionals. Gary Scheiner, educator extraordinaire was awarded the 2014 Diabetes Educator of the Year award and my friend Claire Blum won AADE’s technology award.

While there was a smaller turnout, I felt some winds shifting in the diabetes landscape. Now when presenters used the words, “adherence” and “non-compliance” they did so making fun of those terms, realizing this is no way to categorize patients.

The loud saw of being “patient-centric” and using “motivational interviewing” seems to be subsiding. And actually my own presentation, “Dancing Together: The Power of a Relationship-Centered Approach,” introduced the paradigm of working together, HCPs and patients, talking, exploring, in a compassionate partnership to ultimately design treatment plans – together. That there is a time to teach and a time to listen. A time to be and a time to build. That motivation is nice, but skills are necessary and often overlooked.

Roche generously sponsored giving a copy of my book, “Diabetes Do’s & How-To’s” to the 141 educators who attended the presentation, and I thank them.

For highlights of what was on view in the exhibition hall, take a look at Amy Tenderich’s review.

Diabetes knowledge is the best medicine

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In my continuing tips to help you “develop your emotional strength” to manage diabetes, here’s another excerpt from my inspirational D-book,      “The ABCs Of Loving Yourself With Diabetes.”

Excerpt:

Many people think taking care of their diabetes is up to their doctor or diabetes educator. But it’s not. They’re not with you during the day to remind you to perform your diabetes tasks – to test your blood sugar or choose broccoli over French fries. Diabetes needs to be managed every day by the person who has it – you.

Learning all you can about diabetes is one secret to living a full and healthy life. And you can do this. Think back to a time when you learned about something new, perhaps for a project at work or while in school. At first you didn’t know much and might have felt frightened, but in time you relaxed and then gained new insights, understanding and skills.

Here are a few things to chose from you can do right away: Subscribe to a diabetes magazine, join a social media site online like TuDiabetes, Diabetes Connect or Glu, read a diabetes book (any one of mine), see if your hospital offers a diabetes class, and bring your doctor questions that concern you at your next visit. Knowing all you can about diabetes is not just smart, it’s powerful medicine.

Reflection: Write down something you knew little about and then learned about. Write down how you did that. Then write down two things you will do to learn more about diabetes – and how you will do it. Be specific: what you will do, when you will do it, where you will do it?

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

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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.