Renewing one’s vows to diabetes

MTB Paul Barbara

It was a remarkable Saturday evening in lower Manhattan a few weeks ago. Seated in an old Fire station just off Canal Street about 100 of us, including several diabetes’ luminaries – Psychologist Bill Polonsky, DRI’s Tom Karlya, AADE Educator of the Year Susan Weiner and Marjorie’s Fund founder Jason Baker – watched Paul Binder above renew his vows to his diabetes and his health.

This historic event was hosted by an innovative organization called The Betes. The Betes uses theatre and play to help people with chronic illness embrace their very personal story of illness – see them, hear them and begin to transform them to heal.

Read the whole story on The Huffington Post.

The Little Red Sports Car JDRF Sold to Ford

red carA Guest Post by Eleanor Troutt

Eleanor asked if she could share her story and how could I refuse. She’s written three inspirational books, available world-wide, for kids with T1D.

I’m a senior citizen who happens to have type 1 diabetes. I say “happens to” because diabetes doesn’t define who I am – it’s just a nuisance which I have to keep close tabs on. I don’t want to minimize this disease because it can be a killer but, to me, it’s a wily opponent whom I’m constantly trying to outsmart. And, it’s given me something I’m still in awe of – three published books.

A few years ago I was asked to be a counselor at two summer camps for children with type 1 diabetes and their parents. I thought about what I could share with the children and an analogy formed in my mind. I could compare the changes that diabetes had made in my life to those of a little red sports car that developed a serious mechanical problem. I had always taken my body for granted until it suddenly ceased functioning smoothly and required a major adjustment. Similarly, the little car in my analogy developed a problem which required its owner to learn a complete new way to drive it.

At the end of each camp session there was an amateur evening where campers and counselors presented something for everyone’s enjoyment. I read the story of the little red sports car. Many of the parents were moved and some were in tears as they related it to what they and their child were going through. Several said I should put it into a book.

It was eight years before that became a reality, but with a lot of time and effort and a large measure of help from God, I finally got it out in book form.

Wanting to donate a portion of the sale of each book to the Juvenile Diabetes Research Foundation, I made an appointment to see the CEO of JDRF in my area. She was intrigued and felt the book could be used as a fundraiser by the Ford Motor Company, which was a major sponsor of JDRF. With her help, things happened quickly – one Ford Motor Division after another put in orders for books which they sold and then donated the money to JDRF.

That got The Little Red Sports Car started on its journey and it has sold all over the world since.

Since then I’ve written two more books for children with type 1 diabetes. My second book, Winston the Amazing Dog, is about a guard dog for a circus, who watching the trainer teach one of the stunt riders a new trick, seizes the opportunity to show that he can do it too. People come to the circus just to see him perform, but then he gets diabetes and is devastated thinking his circus career is over. However, with the proper treatment, he performs again and goes on to become even more famous!  Diabetes doesn’t have to stop anyone from becoming anything they want to be.

My third book, Boots the Giant Killer, recounts the story of a little kitten who takes on a clever and wily opponent and wins.  Much as we who have diabetes have to do on a daily basis.

My hope is that my books give children hope that they can live a normal life in spite of diabetes – just with a few adjustments. And I can say that based on my own experience.

My Atlanta washer woman

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This morning I was sitting in the Atlanta airport on the way home from a Sanofi meeting. I’d been invited to moderate a patient panel. Since Sanofi will be losing its patent on Lantus it’s launching a new long-acting basal insulin, Toujeo. The main benefits of Toujeo appear to be a low incidence of nighttime hypoglycemia and 24 plus hours of action. For someone who only takes 8 units of Lantus a day I’ve been told and experienced that it doesn’t last me 24 hours. Toujeo would be a meaningful improvement for me.

But this post isn’t about Toujeo or insulin or Sanofi or even people with diabetes. This post is about Maria the washer woman in the Atlanta women’s rest room, Terminal A just aside gate A 9. She made my trip home, after basking in the compliments from the Sanofi reps, a continued high.

With the line snaking out of the rest room, Maria stood at the front of the line announcing each open stall as it became available. “Okay, two on the left, come right here ladies.” “We’ve got one open in the back on the right just for you ma’am.” “C’mon, ladies, shake a leg, right up here.” “Can I hold your package for you ma’am?” I smiled throughout her broadcast and marveled that she had made one of the loneliest and most menial jobs into a little beehive of super-connectivity, made herself vital to us and turned waiting on a ladies room line into a joyful act.

I left the rest room but couldn’t walk more than a few feet before I turned around and walked back in. I asked Maria, “Can I take your photo? “My photo?” she asked dubiously, curiously. Yes, I said, you gave me so much pleasure while I was waiting on line, you’re amazing. She grinned shyly and posed. cleaneer

Nothing more important going on here than what’s most important – connecting, giving away kindness, creating joy and ease. I’m home now, still thinking of you Maria and still grinning.

New health strategy: Live like a diabetic

I was doing some research this morning for the book I’m currently writing on flourishing with diabetes when I came across a note I’d made to myself. Re-read this article.

Alex O’Meara, author of the post, received two islet cell transplants and was diabetes-free for two years. What’s interesting is during that time as he says, “I did not go out and eat a chocolate Easter bunny. I didn’t sit with gallons of Ben & Jerry’s and sample myself into a gait-altering weight gain. I didn’t gorge at McDonald’s, or drink a pony keg of Pabst Blue Ribbon…” He still thought and acted like a diabetic continuing to eat healthy and exercise.

Almost two years after the transplant his islet cells began to die and he was back to taking insulin shots. But as he says, “I realized my entire life might be a whole lot better as a result of living it as a diabetic.”

I always say I’m healthier due to having diabetes. I would not have given up my beloved scones or walk through snow and slush each winter day had I not the reason to maintain my insulin sensitivity and live a long and healthy life. Maybe we ought to tell our fellow Americans to live like a diabetic [granted, without the constant carb calculations, shots, devices, frustration and worries  ;-)] and watch their health improve.

Positive-speak is surprisingly human

Little girl_2 I’m always a little leery of coming off as Pollyanna talking about flourishing with diabetes and issuing my personal mantra, “You can have a great life not despite, but because of diabetes. But lo and behold I appear to be in the majority not the minority, so maybe I don’t have to hold my tongue.

Just this morning the morning news broadcast research on how we talk, and the story was published in the New York Times. Research shows most of us speak more using positive language than negative. We may be consumed with problems in our lives and we see nothing but talking heads discussing how the world is falling apart, after all news has always followed it’s own mantra, “if it bleeds, it leads,” yet as social creatures who enjoy socializing we talk more often about the positive.

Admittedly, one piece of advice to be happier is to avoid negative people, now that seems quite prescient if not wise. For the full article click here.

I gave her a seat, she gave me a bracelet

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I’m nose-deep in a book I love, Goodbye to All That. It’s based on the quintessential essay Joan Didion wrote about arriving and leaving new york decades ago. The book’s 24 essays, all love/hate letters to new york city capture what constantly goes through your mind and slips through your fingers living here: why you love New York City and would never leave and my, god, how much more of this can I take and where can I go? Its 24 writers have all been there, ahem here, and left. Some come back, some only pine to.

With all those stories filling my head, yesterday I had the perfect new york city day. It started with gifting two hard crusted fennel seed rolls to two acquaintances and ended with being gifted with this bracelet above – and wondering what would life be like if we minded others as much as ourselves. Let me back up.

My husband arrived home from Holland Thursday night after a month away on business and immediately went into a three day course in Manhattan. Yesterday, I was meeting him and two of his friends in the course for dinner. That morning I did something I rarely do, I went shopping; I walked from one to another of my Brownstone Brooklyn neighborhoods treasure-hunting and enjoying the sun after weeks of frigid temperatures, finding everyone friendly in a way we only are here when the sun pokes out after weeks of frigid temperatures.

Toward the end of my errands walking to the bus stop to enjoy the leisure of a bus ride home rather than submerging into the subway, I passed my favorite Italian bakery. This is no ordinary bakery, this bakery has been there longer than you’ve been alive no matter how long that is. Walking in you are engulfed in not the sickly sweet smells of ordinary pies and cakes, no, but nostalgic smells of Italian grandmas who spent their days baking sesame and almond cookies, cannolis and sweetly dry ricotta cheesecakes.

I hesitated thinking of the hard crusted subtly sweet fennel roll only they make. Nah, I said to myself, I don’t need it. So I walked on only to walk back after a few feet. I bought two rolls and asked that they be put in separate bags delighting myself by my own idea that I would give them to my husband’s course-mates when I met them that evening. They were both staying in temporary residences and I thought now they have breakfast.

And so at the end of dinner, I reached into my bag and brought out the little paper white bags with their hidden treasure. How do I describe the silence with so unexpected a gift and the genuine appreciation. I thought how sad it is we don’t do this more often. Just give a little gift to say, “I thought of you.” Just give a little something, even if it’s just a compliment, to touch someone else. We all left the restaurant and my husband and I walked into the furiously falling, fresh, puffy white snow. It was uproarious, magical and we walked to the subway.

Ten minutes into the ride home I noticed an elderly woman standing and got up to give her my seat. As I did, several other people also seemed to arouse and notice her, she who had almost seemed not there a moment earlier. Now several people were offering her their seat but she was insistent to take mine as I had made the first offer. Supported by other passengers, they gently moved her to my seat and righted her. Then we actually took her in. She was dressed quite fashionably in a gold scarf, little ribboned shoes and her light eyes sparkled.

My husband and I began to talk with her and it turns out she is a designer and was returning from a fashion show in Manhattan. She was raised in Istanbul, despite her porcelain complexion and green-blue eyes and is 82 years old. A moment later her eyes filled with tears and she told us that she lost her husband two years ago and it was lonely. She asked what my husband and I do. He told her he helps people do better in whatever their field, mostly business, and that I help people with diabetes. She was moved, her face lit again. “What is your favorite color?” she asked. “Pink” I said. For several moments she searched deep into her big bag and took out this bracelet and gave it to me. Those Italian rolls danced around my head, you give, you get.

“When you get to your stop can you get home?” my husband asked. She looked a bit apprehensive but said yes. She gave us her name and email address, I wanted to think about getting to know her better, contacting her, but I likely won’t because that is also how things happen in New York. Unexpected intersections and then they fade away.

But it was the perfect New York day and I pondered, if this is how days were how beautiful life would be. Perhaps my perfect yesterday was also a special gift to me from above. Yesterday was my 43 year diaversary and I couldn’t think of a way I would have rather celebrated it. Of course now you’ll say I buried the lead.

Medicare’s Competitive Bidding program negatively impacts insulin pump users

Last year Bennet Dunlap and a group of committed DOC (Diabetes Online Community) advocates created a social movement called StripSafely. It was the raising of voices of those with diabetes to encourage the FDA to put a post market survey in place to ensure our test strips and meters meet safety standards and the ISO requirement for blood glucose testing.

The movement was a roaring success. Dunlap went to Washington to present to the FDA. The FDA did develop a post-market surveillance testing program. As background, this movement was prompted by Medicare’s program of competitive bidding for meter and strip manufacturers, increasing the odds that products would be chosen by price, not quality. I was a part of that movement as were thousands of people who wrote letters and it was satisfying indeed to see we could affect such change.

Now, however, the problem continues, or perhaps progresses. A survey conducted by the American Association of Diabetes Educators (AADE) finds that suppliers participating in Medicare’s Competitive Bidding program are failing to provide access to insulin pumps and related supplies. This can critically impact the health of patients either being denied a pump and supplies or being forced to use one not of their choosing. Many suppliers only offer one brand.

Of Medicare’s 29 suppliers, only 17 carry insulin pumps, and only 18 offer replacement supplies. Many suppliers are not meeting their obligation to even offer a pump and Medicare members are having difficulty finding suppliers who do, I know as I am often asked by those on Medicare how can they get an insulin pump? Restrictions also make it difficult if not downright impossible for pump users to switch pump systems. Of course the competitive bidding program was initiated to contain costs, but at what price to members and people with diabetes?

The AADE hopes the survey will help initiate positive change. One would be to move pumps and supplies from their current billing product category to a new product category, “Continuous Insulin Infusion Systems and Supplies.” This would require suppliers to stock pumps and supplies, helping to ensure patients would have access.

Another call is for Medicare to enforce the requirements that suppliers make available pumps and supplies to all Medicare members as indicated through the Healthcare Common Procedure Coding System.

Facing turning 62 this year I can only hope by time I get to Medicare the AADE and other impact organizations will have had their way. While I do not wear a pump, I cannot bear the thought that instruments I do use to remain healthy would be limited and or restricted to me. To think I could not get these items is frankly unthinkable and I’d go so far as to say criminal.

A nearly disastrous hypo event

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My latest article that just went live on The Huffington Post is about something we hardly teach people about – low blood sugar (hypoglycemia). Certainly if you live with type 1 diabetes, you’re no stranger to lows. But if you have type 2 diabetes and use insulin or another glucose (sugar) lowering medication, you can also experience lows.

The absolutely crazy thing is the morning I was writing this post, I kid you not, I gave myself hypoglycemia!!! Divine providence? And I do mean I gave it to myself – I mixed up my rapid- and long-acting insulins. Whoop, as soon as I realized, I pulled the insulin pen out of my leg and freaked. Well, quietly freaked, then ran to the pantry and downed maple syrup.

Here’s the story. Below is information about what you should do to prevent and treat low blood sugar should it happen.

Causes of hypoglycemia

Hypoglycemia is most often caused by skipping a meal or snack or eating less carbohydrates than you’ve taken medicine for. Increased physical activity or drinking alcohol, which typically lowers blood sugar, without eating enough carbohydrates, may also cause hypoglycemia. Or, mixing up your insulins.

Symptoms

Mild hypoglycemia (blood sugar below 70 mg/dl (3.9 mmol/l)) – Sweating, shakiness, pounding heartbeat, drowsiness, numbness, tingling of mouth or lips.

Moderate hypoglycemia (blood sugar below 55 mg/dl (3 mmol/l) – Headache, irritability, blurred vision, confusion or difficulty concentrating, ravenous hunger, slurred or slow speech, poor coordination. People in moderate hypoglycemia are often thought to be drunk.

Severe hypoglycemia (blood sugar below 40 mg/dl (2.2 mmol/l) – Convulsions, seizures, unconsciousness. If this state is not remedied you can die.

Treatment

For mild and moderate hypoglycemia the rule of thumb is the “Rule of 15.” l  Eat 15-20 grams of fast acting carbohydrate – for instance 4 glucose tablets, 4 ounces of juice or regular soda, 2 tablespoons of honey or maple syrup, a handful of Skittles or  SweeTarts – wait 15 minutes and check your blood sugar again.

You want to bring your blood sugar up to around 100 mg/dl (5.5 mmol/l). If you’re still low, repeat the Rule of 15.

If you experience severe hypoglycemia, since you cannot help yourself, someone must inject you with glucagon if you have it, or call 911. If you are helping someone with severe hypoglycemia, never force them to eat or drink as they can choke.

Because glucagon can be difficult to use – it requires mixing a formula and injecting a loved one when you’re panicking – several companies are working on an easier formulation and delivery method. These include an epi-like pen and a needle-free nasal powder.

Prevention

There is no foolproof method to prevent hypoglycemia and if you have hypoglycemia unawareness (you don’t get the symptoms of hypoglycemia) you are at greater risk.

The best prevention is to check your blood sugar frequently, including before and after meals and exercise, before you drive, and before you go to bed to try and prevent going low while you sleep. Also, take heed of the causes of hypoglycemia above.

Since you can’t always prevent hypoglycemia, do be prepared for it. Keep a form of quick acting sugar in your home, at your office, in your car and by your bed. I carry 4 glucose tablets in these little plastic keychain containers (available online) in all my purses and jacket pockets and keep a bottle of glucose tablets by my bed.

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If you want to know more about prevention, read certified diabetes educator Gary Scheiner’s article, 10 Proven Strategies for Cutting Down on Low Blood Sugars.

 

 

Welcome to my … face lift

Diabetes Stories

I’ve always thought I wouldn’t get a face lift, but who knew? Okay, I didn’t get one but my web site did. And, by the way, my closet is getting one too at this very moment. It promises to be a walk-in closet, although once you walk in there’s barely enough room to turn. Ah, city living.

Okay, back to diabetes. If you’ve been to my site, DiabetesStories, before, it looked like the above picture, so now you know you’re in the right place. (Hopefully) you’ve been redirected here and it looks a little more like we’re in the 21st century. Yes, after seven years blogging, it was time to go into the clouds.

Take a few minutes to stroll around, there are some nice photos. I especially like the one of the hand on my WORK page. You’ll learn a bit about me, my work, my books, and this and that and feel free to contact me on the CONTACT page. It’ll be lonely here when my contractor finds the door handle for the closet that he’s looking for and it’ll be just me again. I’ll continue blogging here on things I find new and interesting or thought provoking or personal. Plus, there’s an amazing archive of blog posts, over 7 years, and really, when I went back to read them all, many were quite impressive.

This year I’m writing my fourth book. Yes, some people say, “Why?” My Aunt thought I couldn’t fill one, and she has diabetes. This one’s about how to flourish with diabetes. Trust me, there’s little if anything that’ll tell you that. I’m not talking cope, I’m talking flourish. How to live a joyful, productive, purposeful, healthy and happy life – with diabetes. Or as I like to say not despite, but because of diabetes. Health professionals will also learn how to work from a “flourishing” rather than a “coping”approach, and yes, there’ll be simple tools to help you.

I’m also creating some mini videos for dLife based on my latest book, Diabetes Do’s & How-To’s, which will be, hopefully again, fun and entertaining and designing a series of webinars for Wellcoaches, to help health professionals gain some coaching skills to more effectively help people with pre-diabetes delay or avoid type 2 diabetes.

So that’s it in a nutshell, except for the wild parties, orgies and raves of course.

As Oscar Wilde said, “We are all in the gutter, but some of us are looking at the stars.” I’m right here in the gutter with you living with diabetes, 43 years this month, but most of the time I’m looking up at the stars. You get that that’s figurative because you can’t see stars in New York City. But quite literally, it would be my greatest pleasure to take you along.

With this new site we’re already in the clouds, how much further could it be?

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Mixing up 2 insulins and tightrope walking without a meter

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Okay, it’s almost funny or like when all your electrical thingamajigs don’t turn on at the same time.

Saturday I spent the day with a friend and slept at her apartment because I’m having my closet renovated and there was going to be a heavy smell of oil primer which I was informed would make breathing, let alone sleeping, a no-go.

So, okay, I took my lodging elsewhere. Except, while I was dutiful to pack my meds and meter, I didn’t realize there was no lancing device in my meter case. In the end, it wasn’t a big deal. I didn’t experience going too high or too low, but I realized just how vulnerable I felt without being able to check my blood sugar throughout the day to know for sure. It felt like walking on a tightrope without a net. It was not a nice feeling.

Then this morning, this very morning while writing a post on hypoglycemia (low blood sugar) for The Huffington Post, I almost gave it to myself. Two days ago I acquired an insulin pen, the Echo pen which holds Novolog, for my mealtime injections. I’ve long used the Lantus Solostar insulin pen for my long-acting insulin, but always taken my mealtime insulin with vial and syringe. So, without thinking, injecting myself with the Echo pen, I gave myself my Lantus dose. I took 8 units of Novolog instead of 2.

I knew this was not good but there were so many variables which could make this go terribly wrong or terribly right. As soon as my finger pressed the Echo pen button and hit bottom, I realized my error and yanked the pen out of my leg. So I didn’t hold the button depressed for any length of time. So, how much insulin had actually gone into my body? I had no idea.

Also, this has never happened to me before, to overdose like this, and I didn’t want to find myself passed out on the floor in an hour, especially as I was home alone. So I drank a quarter cup of maple syrup and watched my blood sugar skyrocket to 338 on my Dexcom CGM! But, I didn’t know if I could trust “Pinkie” yet because I had just put her on this morning and it usually takes a day of calibration with my meter for her to track. Oy, again!

All that said, I decided I didn’t want my blood sugar to keep increasing, and in my mild hysteria, or loss of all rational thinking, I decided to take my usual morning walk to bring down the syrup high. Yep, I went out into absolutely miserable weather – hail, rain and sleet, trying not to fall on the ice, to now walk my sugar down, forgetting, while the syrup had immediately raised my blood sugar the insulin hadn’t had enough time to peak yet to start brining it down.

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You can see on my CGM what occurred. Actually, it all went pretty well. My guess is I didn’t get more than a few units of Novolog into my body because I didn’t keep the insulin pen button depressed. And I’m fine now, but I truly realized after living with diabetes for 42 years, how vulnerable we are every day and the opportunity for casual, yet impactful, mistakes.

My father told me when I was sixteen and he was teaching me to drive that I had a heavy foot on the gas. I now realize I also have a heavy hand on my insulin at times and at other times am too quick to correct. Well, nobody’s perfect, and how I try!

I can’t say that I’ve learned from this because I know you can do the exact same things two days in a row and get different results, but what it has taught me is to slow down, think a bit more, and have a bit lighter hand on whatever I’m doing.

And I can say, in the end, I’m still here.