This is Type 1 diabetes, high and low blood sugars

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This was on Facebook. This is not my Dexcom, but it could be. What struck me is how so many of us are compelled to put our numbers up and share them looking for comfort, camaraderie and someone else who “gets it.” For when it comes to getting it, I believe much of the health care community is in denial. 

We cannot “control” blood sugars in people with diabetes who use insulin. That’s everyone with type 1 and some with type 2. But that frustrates health professionals; after all their job is to cure us, short of that to fix the problem – our up and down blood sugars. 

But that is the very nature of diabetes – fluctuating blood sugars. And even with 24/7 oversight, no matter how hard I work at it, trying to do what a normal functioning pancreas does, I fail. My brain simply cannot replace a normal functioning pancreas.

I wrote about this recently on The Huffington Post in “Type 1 Diabetes Fully Explained.” It went viral in hours. Hundreds of fellow Type 1s wrote to me saying how I had perfectly captured how impossible it is to perfectly control type 1 diabetes. 

It is time for us to agree that the norm of diabetes, intrinsically, its very nature is up and down blood sugars, especially for T1D and insulin-dependent T2s. 

It is time to accept this and stop trying to fight it and control it. I hate that word control. This doesn’t mean that we shouldn’t work at having blood sugars as often as possible in our target range, but let’s agree it’s hard and let’s agree we can’t be perfect at this and let’s sigh a collective sigh of relief. We deserve it.

Furthermore, creating goals is the wrong way to manage diabetes. Goals reinforce the idea that if we only work harder we can lick this beast. But we can’t. Goals reinforce that there is a perfect standard and we just aren’t working hard enough if we haven’t achieved it. 

Rather, what we should learn is what to do with our numbers in the moment, keep breathing, and have the knowledge and no self-blame to do it – and then smile because we did something good for ourselves.

Funny thing, but given that blood sugars fluctuate all day and all night, we are much better off to befriend our efforts, both strong and weak, and behead the doctor who tells us our numbers “should” be better.

I want people with diabetes to hear from their health professional:

“This is tough. You have a condition that requires a lot of work and vigilance. Some days you’ll do better than others. Don’t beat yourself up, instead do your best as often as you can and know that the very nature of diabetes is up and down blood sugars. You cannot do this perfectly because your body will be doing something unpredictable a good deal of the time. Just know this, accept this and keep breathing. I for one honor what you do living with this everyday.” 

Best diabetes blogs of 2014

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Every year Healthline, committed to providing health and medical information, tools,  technologies and doctor-reviewed resources to patients and providers, votes for the Best Diabetes Blogs.

I think I’ve been awarded this honor each of the past several years for this blog right here on DiabetesStories. 

My kudos to the fine and notable company I keep. All of these people and organizations are out there to help you, whether you have type 1 or 2, to learn, connect, commit to and improve your diabetes care. 

Here’s the list and a few sentences description of each – it’s a great group to follow.

Thank you Healthline.

“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.

Serving is our path to wholeness

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I‘ve posted here before about holistic Dr. Rachel Naomi Remen. Herself a patient with Crohn’s disease since the age of 15, most of her work in medicine has been with patients at their ends of their lives with cancer. 

She has created a program, called Commonweal, for cancer patients to gather and experience healing, if not a cure. She has created The Healer’s Art, a curriculum for doctors to gather and heal from their work: not being allowed to grieve for their patients, medicine’s emphasis on science and dismissal of spirit and mystery, and from the medical system itself that stresses being an expert over being a person. It is taught in many medical schools now.

She has written books telling the stories of life, of healing, of what’s important that she learned as a very young child from her Rabbi grandfather and as a doctor tending to her dying patients. 

This passage I just read this morning from her book, My Grandfather’s Blessings and it seems particularly fitting this weekend over the Easter and Passover holiday:

“Serving anything worthwhile is a commitment to a direction over time and may require us to relinquish many moment-to-moment attachments, to let go of pride, approval, recognition, or even success. This is true whether we be parents, researchers, educators, artists, or heads of state. Serving life may require a faithfulness to purpose that lasts over a lifetime. It is less a work of the ego than a choice of the soul.”

I know so many people through this work who serve and I believe it is our path to wholeness. 

I try, as a practice, to be kind, to be conscious and to leave people feeling a little better than before I wandered into their space. But it’s a practice and I need to be reminded to be conscious on a regular basis.

The twelfth year of my 20-year overnight success: Broadening the bandwidth to Flourishing with illness

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I just got back from the Netherlands. I went as a speaker in Novo Nordisk’s 5th DAWN Summit. Doctors, patients, psychologists, policy-makers and researchers gathered from 33 countries for two days of idea-generation and planning how to improve the lives of people with diabetes. I met wonderful people equally committed to help people with diabetes live fuller, healthier, happier lives, including a noted Dutch psychologist, Frans Pouwer, who hearing of my Flourishing Approach now wants to research it.

While in the Netherlands, I was also invited to speak to the leadership team of AstraZeneca, NL. AstraZeneca acquired Bristol-Myers Squibb and now diabetes is one of their largest market sectors. 

For the past few years I’ve been noticing, increasingly, we live in a time I’d call “The Rise of the Patient.” As patients, we are leaders in our own right living with an illness, and many of us have insights and capacities to help transform healthcare delivery for chronic illnesses. My own work toward that is sharing with health professionals how to work from a Flourishing Approach, as opposed to the traditional Coping Approach. And for people with illness, to live from the same orientation. I shared the Approach with Ginger Vieira in this recent post, “From Coping to Flourishing: How a Better Mindset Can Transform Health.”

Every year since I’ve been working in diabetes I’ve said, “I’m in the first year of my 20-year overnight success.” Of course each year it increases by one. Now I am in the twelfth year of my 20-year overnight success – and I feel the traction: of my own success, of the power of the patient and of minds opening to the idea that we have to do chronic illness differently. Actually, I have been sharing the Flourishing Approach over the past several years at various conferences e.g. the American Association of Diabetes Educators’, TCOYD, DiabetesSisters and each time I am met with enthusiasm and respect.

In the past few months I have received many opportunities to share the Flourishing Approach and its tools around the world. In December in Melbourne, Australia at the IDF World Congress, where I addressed 134 Young Leaders in Diabetes on behalf of Novo Nordisk.  A few weeks later, at the Royal Prince Alfred Hospital in Sydney where I addressed the endocrinology department.  

In January I spent 18 days in Bangalore, India where I gave six classes and workshops to health professionals at the Jnana Sanjeevini Medical Center, a diabetes clinic for the poor. I have also addressed more than 200 medical professionals at two premiere hospitals in Singapore. Two years ago I gave a workshop for health  providers of the Pascua Yaqui tribe. It was held over two days and the second day patients joined providers and together barriers dropped, communication opened and both saw a new space open in front of them.  

In March of this year I presented the Flourishing Approach to the Telehealth group of NYC Health and Hospitals Corporation. There a staff of committed nurse/coaches speak weekly to people with diabetes in need of help. They, like all I have spoken to, have been delighted to hear this more positive approach and are interested in applying it in their coaching practice with patients.  

I have written a number of articles on this approach. “A Flourishing Approach to Mental Health in Patients with Diabetes” in last summer’s issue of the peer-reviewed On the Cutting Edge. Two recent articles on The Huffington Post include, “Chronic Illness’ Opportunity for Patients and Providers” and “The Antidote to Living With Diabetes.” There will shortly be an upcoming article on Sanofi DX. And now I feel fully confident that I have enough research, tested the waters and seen everywhere I present this new framework/lens and way of working and living, providers and patients have only wanted more. 

So this year I will be writing my next and fourth book on flourishing with diabetes. It will provide the understanding of a flourishing framework and how – and why – we need to treat people with chronic illness differently than we do today. Moving from problem- to solution-focused. To look at what’s working instead of what isn’t, work from a trusted partnership, be compassionate, see the whole person and understand the context within which they live, not merely micro-manage the disease. 

We must offer hope and possibilities, knowing the power of both and that there is post-traumatic growth, not only post-traumatic stress. We must explore patients’ strengths and resilience, as we help them move toward a healthy, happy, vigorous, robust and purposeful life.

For twelve years I have said, “You can have a great life, not despite, but because of diabetes.” Because people shared with me this is how they were living. 

We can open a doorway to a new space to be with patients, and a new space for people with illness to be in, where coping is not the target or the answer, but flourishing is. 

It is time.

Elaine Stritch, 88 years young, type 2 and going strong

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A few days ago i saw the documentary film, Elaine Stritch: Shoot Me. I was bowled over. I first saw Elaine Stritch, singer, Broadway actress, comedian and larger than life figure, in the original production of Steven Sondheim’sCompany on Broadway. She stole the show.

I must have been in my twenties, I have no recollection why I was at that show, it was much too intelligent for me at the time, but anyone who saw it couldn’t help but be moved by a musical number that was Elaine’s alone, “The Ladies Who Lunch.” She commanded the stage and her deep throated voice grabbed out to the unsuspecting in the last row.

The documentary I just saw, which is more about her present life still putting on a pair of tights and while shirt, performing at 88, shows her as just as she’s always presented herself – authentically. From skipping down along Central Park in Manhattan to yelling at cab drivers, to fearing for her life having a low. She’s one bawdy broad. Elaine is just one of those people, the millions among us, who has type 2 diabetes and is on insulin and has lows and sometimes ends up in the hospital.

If you want to be moved and you have an independent film theatre in your town, maybe it’s still playing. Or netflix it soon. 

Today, it’s been raining all day and grey enough to keep me inside. and so I’m now watching her London performance from 2002 called Elaine Stritch at Liberty, a summation of her gorgeous career. This you can Youtube now. 

It has nothing to do with diabetes, it’s pure performance, but hey, living with diabetes, and being sixty, more and more I realize, life is not just about work, but also play. Enjoy.

Dr. Rachel Naomi Remen talks about the art of living

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I have been a fan of Dr. Rachel Naomi Remen since I first read her book,Kitchen Table Wisdom. It is a collection of stories about what she has learned from her patients. Most of whom are in the last stages of cancer.

Remen herself has lived with Crohn’s disease since she was in her twenties, yet her writing and her speaking is predominantly about the blessings in life that all too often most of us only see when we are at the end of it. The power of sharing our “stories,” living with a sense of wonder and honoring each other.

I was reminded of Remen by a recent contact I made, a woman who once we started talking, immediately asked me if I’d read Remen’s books?

So now I am taking up Remen again. Reading one of her books I had not, My Grandfather’s Blessings. Already this morning only reading the introduction, I was in tears reflecting on all the blessings I have in my own life – my husband, family, friends, work; all the kindnesses and all the heart that is webbed and woven around me. 

Remen embodies bravery, speaking to doctors about how medical training is like a disease that may be necessary for health care providers to recovery from. Here she was giving an address last year to women in medicine. 

How uncomfortable she notes doctors are made by their own professional culture taught to dishonor the things that truly provide healing, like connection, hope, awe and authenticity. Medical school Remen said, “does not train us to be fellow human beings.”

Her stories are amazing and uplifting. They will make you see your life differently. Thank you Rachel Naomi Remen.

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.