#4 HuffPost: Let’s Stop Lying About Diabetes

 

control is an illusion.pngIn the past year how we speak about diabetes and the language we use with patients, has finally come to light. Words like “diabetic,” “test,” “adherence,” and “compliance,” are slowly being understood to be derogatory, limiting, belittling, prejudicial and downright mean. And, my all-time favorite, “control,” is an out and out lie.

Why? Read the article I wrote in 2014, “Let’s Stop Lying About Diabetes.” Nothing has changed.

Every day people die of diabetes – even those you expect wouldn’t

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Sometimes I wonder what people would think if they knew i have my share of low blood sugars and high blood sugars. I can misjudge the carbohydrates in what I’m eating, I’m frequently surprised when my blood sugar is either lower or higher than I expect and at times I can’t remember if I took my shot before a meal. Me, a smart, educated patient. Me, a supposed role model.

So I was surprised and so saddened to read that a young man, who is part of the International Diabetes Federation patient group, the Blue Circle Voices, died a few days ago at age 32 due to problems with his diabetes. I do not know what those problems were. I only know his name, Onesmus Kahiu, that he lived in Kenya and that he had founded an organization called, Smile Again Diabetes Children. Onesmus was a health coach who helped children get access to medical necessities, education to manage their diabetes and love themselves. The photo above is from his LinkedIn page.

You get it, don’t you? This young man, who was instilling in children with diabetes that they should smile, died of his disease. This young man who was changing things in his country, a role model for others, who cared and wanted to uplift others.

We should never assume anyone has type 1 diabetes down. We should never assume this disease cannot get any of us. But while we’re here, we can gift those who devote their lives to make the world a better place for others with our love and respect.

I didn’t know you Onesmus, but I am sad you are gone.

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#3 Huffpost: 17 Tips From a Diabetes Patient-Expert

Here’s the third in my series of 10 top articles I’ve written over the past seven years for the HuffPost. I’m not typically a fan of “tips and tricks” articles; I don’t think for real value that most things can be reduced into a few simple sentences. But I will say, there’s a lot of my hard-won wisdom from decades of living with diabetes in this post.

One tip I would likely add today is to keep abreast of new medications and devices. If you can afford it, they can often make managing diabetes easier and offer new insights.

When I was diagnosed in 1972, we didn’t even have glucose meter. It took 10 years for them to be available to patients. Today we’ve got all kinds of medications for type 2 and faster insulin, smart insulin pumps and pens and continuous glucose monitors.

Meanwhile here are the 17 tips that are just as valid today as in 2011 when I wrote this. And now you know a great many things that I’ve learned over a great many years.

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#2 HuffPost post: Amazingly delicious low-carb yummies

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Seedy, nutty muffin above. Cooks one minute in the microwave in a mug.

I said a few posts ago that I would post the top 10 of my HuffPost articles. If you missed it, this was #1 Type 1 Diabetes Finally Explained.

I may be part of a video series about “getting real” about diabetes, and in a cooking segment. I’ll post here if it happens. That recent discussion couldn’t help but call this HuffPost article I wrote last year to mind. “The Fantastic, Delicious, Super Low-Carb Muffin, Bread and Biscotti.” 

These are all foods I’ve made and typically have on hand. The secret is using no flour but almond meal; the carb count goes down dramatically, and they’re still as the title says, delicious.

Enjoy!

Why doesn’t Dexcom talk about “compression lows?”

After using Dexcom on and off for a few years, now the G5, I found a flaw I wasn’t aware of before.  Often in the morning the sensor reads lowish (around 60) while my meter put me 30-ish points higher. For a long time I thought Dexcom just needed to be re-calibrated upon waking.

Then I recalled reading something someone had posted on Facebook called “compression lows.” I posted my own question on Facebook last week and got confirmation. If your sensor is on a place on your body – for me my upper left shoulder – and you sleep on it or roll on it while you sleep, the sensor begins to calculate lower blood sugars. 

While I sleep on my opposite side, before I go to sleep I read and I’m lying on the sensor to keep my book light from shining in my husband’s eyes. And, of course, we all roll in our sleep.

So, this morning, I ran this short, but irrefutable, experiment.

I woke up at 6:30 AM, checked on my meter which said 92 while my Dexcom said 90. Good start. Then I lay on on my arm where my sensor is; my sensor was now under the weight of my upper body. Presto – the next three numbers drop down on my Dexcom to 64 within 15 minutes (3 readings). I then rolled off the sensor, and sure enough the next four numbers take me right back up to 92.

 

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I can’t believe Dexcom doesn’t talk about this. I searched the web and found nothing from the company, only reporting from other patient users. Thank god for that. There must be many users making inaccurate dosing decisions based on these false readings.

If you wear the sensor on your upper arm, how do you avoid this problem? And c’mon Dexcom tell it like it is. You know people are wearing it on various body sites, not exclusively the abdomen, the one place for which you submitted FDA approval.

7 years of HuffPost writing ends

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Today the email went out: HuffPost is closing its platform to contributing bloggers. For me, it’s the end of an era, and about seven years of writing as expert an article as I could. Yes, it’s true, we were never paid, but the reward was of course in visibility and sharing my point of view.

I still remember my first post was about Dr. Oz giving a distorted explanation about diabetes on the Oprah show. And so I wrote, “An Open Letter To Oprah Winfrey and Gayle King.” And it got published! Admittedly, it was thrilling too see my work published week after week, month after month.

The explanation directly from HuffPost to its bloggers for closing the contributor’s platform is vague. Here’s just a piece of it –

Today, with the proliferation of social media and self-publishing platforms across the web, people have many more opportunities to share their thoughts and opinions online. At the same time, the quantity and volume of noise means truly being heard is harder than ever. Those who are willing to shout the loudest often drown out new, more-deserving voices. The same has proven to be true on our own platform.

It is with this in mind that we have made the decision to close the contributors platform on our U.S. site.

As they say, everything changes. I will post from time to time going forward on Thrive Global. My first article for Thrive appeared in November, “The most important thing we’ve forgotten in healthcare.”

I will also continue to blog here. Over the next few weeks, I plan to post here the Top 10 articles I’ve written on the Huffington Post during the past seven years.

For now, I leave you with my most read article that got a voluminous amount of likes and shares – Type 1 Diabetes Finally Explained.  So many people wrote to tell me how much it meant to them and how they could now talk to their friends and family about diabetes in a way that they would understand. It moved me no end.

The link to almost all my Huffington Post articles is here. Most are timeless.

Thank you HuffPost for the great run and for putting my voice on the global stage.

Can you get complications despite good diabetes management?

In a word, “yes.”

I pose the question because someone I know who’s diabetes-savvy posted this on Facebook today:

 

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Melissa Lee, amazing fellow T1D, then posted an article I’d written about this topic in response:

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It made me go back and re-read my own post that I had written a while back (originally for HuffPost, reprinted on a sweetlife.com). It’s exactly about my personal experience of working hard at my diabetes management yet complications still come.

Excerpt from the post:

“Now you see me, now you don’t, diabetes. You are there and not there. I can forget you, but never as long as for a day. And while I know I’m better off working to keep my diabetes well managed to have my best chance to keep complications at bay – and I am very positive most of the time, even seeing gifts I’ve gained from having diabetes – I also know I cannot control anything.”
As Stacey asks above, it points out that we who live with diabetes need to know complications are not necessarily a reflection of our efforts. And people who don’t have diabetes need to understand that you can manage diabetes tightly and still get complications. There is no blame to be placed, it’s the nature of diabetes, and the spin of the dice.
That said, this is not to discourage you, but to say the best you can do is your best, and doing so, take some comfort in that.

 

 

Has being down under turned my blood sugar upside down?

No way to tell for sure if my blood sugar has gone the way of toilets down here in Australia, cycling the other way ’round, but certainly being out of my routine has made my numbers more volatile.

So, like my fellow type 1s suggest, I’m going to give myself some space, stop the critical self-talk and know once I’m home and back in my routine, everything will normalize.

Let’s face it, you can fret over all the unexpected foods, events, and as a consequence numbers, or accept that’s life for a few weeks.

Meanwhile, there’s no end of adventures – Zoofari, wine, exotic animals and gorgeous blueberries! Sorry about everyone who’s freezing while it’s 88 F and sun, sun, sun.

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Traveling around the world with type 1 diabetes – and all that means

I left the States November 11th, a week after my father died. It’s December 13th and I’m in Sydney, Australia. I’m realizing a few things during this past month of travel: 1) This is a great distraction from now only having one parent. 2) I’ve done some remarkable work, realizing again the impact of what I share with health professionals no matter where in the world it be. 3) My diabetes management has almost become a joke. No matter how hard I watch it and adjust, while wearing my Dexcom G5, it is determined to undermine me.

I’m going to share highlights of this trip and some pictures, and how it’s going diabetes-wise.  This may be an entertaining travelogue, and at best offer some diabetes enlightenment.

My trip started in the Netherlands, the country of my husband’s birth, visiting his relatives and friends. Hanging out with my sister-in-law is always heart-rewarding, as are strolls along the beautiful canal-lined, cobble-stoned, house-leaning streets.

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Three days after arriving in Holland I flew off to Copenhagen, Denmark, where I was giving two workshops at the national Region/Steno Diabetes Conference and the following day giving a keynote presentation and facilitating a workshop for the researchers at the Steno Diabetes Education institute. This was the major work part of my trip, sharing the Flourishing Treatment Approach and some of its tools with providers, and also questioning the conference’s theme – getting patients more involved in their care.  Actually, I think the opposite would produce better results, having providers learn more about their patients’ lives.

My first article tells the story on Thrive: The most important thing we’ve forgotten in healthcare: That people are humans not machines.

After a return to Holland the husband and I traveled together to London for a long weekend with friends. Regent Street, one of the main boulevards, was beautiful, lit with overheard angels running throughout the city, and, we only had one terrorist scare. All of a sudden police cars and fire trucks zoomed past us and police stopped pedestrians from walking. For a moment, I thought, maybe this is it for me. Luckily, it was a false alarm.

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Back in Holland for another 10 days, then the husband and I flew to Abu Dhabi for the International Diabetes Federation World Congress which is held every two years. Six years ago it was in Dubai so this was not my first trip to the United Arab Emirates (UAE). But Abu Dhabi is a very sleepy, sandy version of Dubai. Everything exists in a fairly desolate desert setting. We did see, in addition to the five football field large conference hall, their version of Target. The UAE’s one airline had destroyed the husband’s Hartman suitcase and claimed no responsibility. We’re hoping the rather inexpensive replacement just lasts til we get home.

My other piece of work on this trip was Chairing and speaking at a session to introduce IDF’s one year old PWD group, the Blue Circle Voices. And, even in the desert, I got to catch up with other diabetes patient advocates. Always a joy. I applaud the IDF for including people with diabetes more than most diabetes conferences do, and the word from the new President, Dr. Nam Cho, is there will be even more of a patient presence at the next World Congress in South Korea.

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From Abu Dhabi we flew to Singapore. Leaving the sand and being transported into lush greenery everywhere, as well as overcrowded streets and shopping malls with nothing but young people, was culture shocking. On my personal mission, I wandered through two fountain pen stores loving the opportunity to see, touch and feel these gorgeous pieces of art and craftsmanship. That said, Singapore, once a bargain ground for goods, has now become one of the most expensive cities. Alas, no purchases were made.

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I did indulge however in a hot stone massage where a very unexpected thing happened. I pointed out ‘Pinkie’ (my Dexcom transmitter) on my arm to the masseuse and told her to just work around it. She didn’t like that, but not for the reason I thought. When she heard the device was for diabetes, she told me I couldn’t have the massage. “Why?” I asked. She said it would raise my blood sugar!

Now I was perplexed. I told her not to worry, I’ve had massages before, so she left to call in the owner who explained to me that the lavender oil they use would raise my blood sugar. I told them to go ahead and I’d take full responsibility. They did, and I did. And, guess what, they were right. My blood sugar went up 20 points. As all things that go up must come down, it came down shortly thereafter, so I was a very happy, relaxed recipient.

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And I had a second unexpected event. While at the Bird Park that has thousands of species of birds, a young mother and son were singing “Happy Birthday” to a parrot, hoping he would sing, or at least, talk back. I began to tear up. Not at the tenderness of the act, but while my father was ‘actively dying’ my mother, brother, husband and I sang him “Happy Birthday.” The nurse had suggested it since he would not reach his next birthday two weeks ahead. In that moment, in Singapore, in front of this parrot, I felt a sadness and deep loss of a parent. And this is how I know it will come, in odd moments.

After 2.5 days in Singapore another midnight flight brought us to Sydney where we’ll be for a month staying with friends. It’s 90 F, sunny, sunny, sunny and we’re trying once, twice, thrice again to get our bodies where we are, and some sleep! Our friends have arranged time at their country house in the Blue Mountains and next week a very special trip inland to a wild nature reserve and vineyards, perhaps time there will be equally wild for wine lovers.

So, it’s been a month on the road and my blood sugar has been untamable. Always one to say, “You can’t control diabetes or blood sugar,” I’m ready to take my words now and blast them on a billboard. Lack of sleep, temperature changes, jet lag, time zones, unidentifiable foods, who the hell knows carb counts, I’m frankly all over the place.

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I’m swinging like a monkey, and frustrated. Sometimes being near tears I feel so defeated. So I’ve taken an oath to be kinder to myself, realize there’s only so much I can do and that while I’m on this trip my numbers get to be temporarily wherever they are and that’s the best I can do.

I’m curious – Do you change the in-range number you shoot for, or the one number to try to use as a docking station, when you take an extended trip? Do you still maintain your normal diet or say the hell with it? What else do you experience, do or realize when up against these type of challenging events and times?

 

Introducing the Flourishing Approach at the Region Steno conference in Copenhagen

There’s little I enjoy more than sharing with health professionals the Flourishing Treatment Approach and training them, in less than two hours, in a few of its strengths-based tools. They acquire skills that often are the missing link to patient involvement and activation.

Screen Shot 2017-11-20 at 10.39.36 AM.pngIt is rich to see them work among themselves and gain new insights and capabilities. It is remarkable to see them nod in agreement when they hear, as if for the first time, things they have known intuitively all their lives: how people with diabetes being human beings, not machines, require a different way of engagement.

It is sad that this more empathetic way of working has all but been trained out of health professionals in their medical education. And, I believe, it is reckless that safety, trust, listening and partnership’s ability to drive behavior is all but overlooked in our pressurized, standardized health system.

Wednesday, November 15th I worked with almost 100 diabetes nurses, educators, researchers and physical therapists at the Region Steno National Konference in Copenhagen. I had them practice beginning a conversation from a solution-focused perspective rather than a problem perspective.

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Health professionals typically find it difficult to start a dialogue looking for what a person with diabetes is doing well; it requires a new way of seeing and developing a new muscle. They, like other providers I’ve trained, also found it hard, and eye-opening.

I also had them work in pairs listening for, and then sharing, the strengths they heard in their partner after she told a particular story. They were struck by how close you can become to someone you don’t know in a matter of minutes, just by listening with your whole being, listening empathetically. They understand immediately how valuable this is for working with their patients.

On the Thursday I ran another workshop, this one at Steno Diabetes Center Copenhagen and gave a keynote presentation on the theme of the previous day’s conference – Patient Involvement. However, my own view is that pulling patients into the medical world asking them to take on greater responsibility will not activate them more in their self-care.

Instead providers must step into their patient’s world – see how they live and learn about their challenges and resources so that they can meet them where they are. This meeting is the connection through which people feel that they have a partner, they are not alone. This often inspires greater confidence, ability and desire to take better care of themselves.

I believe we should be changing Patient Involvement to Provider Involvement.

During my keynote I read a quote by MD Atul Gawande, a surgeon at Brigham Women’s Hospital in Boston and Professor at Harvard School of Public Health. Gawande writes a fantastic column for the New Yorker magazine.

“In the 1990’s we replaced medical paternalism with the belief that we should activate patients by giving them options. But in the real world they ask us, “What would you do?” Because you are the expert, you still know better. This is for you to decide we say. And that is when people feel completely abandoned.”

Gawande goes on to say that palliative care clinicians also offer patients options and then they do something more. They ask, ‘What matters to you?’ And then they do something more, they listen.

And this is when patients feel connection and capability, two powerful motivational forces.

It is difficult for me to experience, and to watch others with diabetes, suffering. Due in part to many providers lacking the training and understanding how to effectively treat people with chronic illness. It is also tragic to see providers suffer from burnout and frustration, and leave the profession because they lack these skills.

This is why every time I get to change this landscape, to strengthen providers’ skills and the bond between patient and provider, I know I am just where I’m meant to be. How tremendous this time it turned out to be Copenhagen.

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Photo by Mathias Løvgreen Bojesen