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.




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

Screen Shot 2018-01-18 at 4.49.06 PM.png

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:


Screen Shot 2018-01-17 at 10.05.40 PM.png

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

Screen Shot 2018-01-17 at 10.07.37 PM.png

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.



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.

Holland 1.jpgHolland.jpg

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.


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.


Asking Q.jpg

Conference girls.jpgBou with falcon.jpg


Mosque 1.jpg

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.


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.

Bird Park.jpg

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.

control is an illusion.png

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.

Screen Shot 2017-11-20 at 10.39.10 AM.png

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.


Photo by Mathias Løvgreen Bojesen


Afrezza does it for me first time out

IMG_7438.JPGI know a lot of type 1s have waxed poetic over the amazing effects of Afrezza-particularly it’s quick onset and just as quick exit from the body. That always appealed to me, but I couldn’t fathom how I could use it when the smallest dose it comes in, in its little colored blister packs as seen above, is 4 units. Eating low carb I rarely take more than 1 unit of rapid acting insulin for a meal.

That said, when I went to my endo last month something made me ask him if he had any samples he could give me so I could just try it. And, with unusual foresight, I packed it last night into my luggage for a two month trip I have just embarked upon overseas. While my blood sugar is pretty predictable when I’m home sticking to my routine, it’s all but that when I travel and have little influence over what I eat, jet lag, what my body’s biorhythms are doing, etc, etc…

So right out of the box, or I guess I should say gate, landing in Amsterdam at 9 AM Dutch time, 3 AM NYC time, being met by the husband, we sat for a cappuccino. Boom! My blood sugar began climbing from 102 to 194. I got out my insulin and began dosing single units until I’d taken 5. I daren’t do more. Even though my blood sugar was 264 and didn’t seem to be budging, I knew eventually it would. And that’s the crux, it takes so dang long to come down.  Two hours later it was slowly sliding back down.

Now 1:30 PM Dutch time, 7:30 AM NYC time, we went for lunch. I had mushroom soup and a stir fry with just vegetables and beef. I didn’t take any insulin because I figured I had enough on board to cover this meal. I didn’t. Boom! It started climbing again. Now, at 200 again, I took one unit of insulin and we walked around the corner back to our hotel so I could try Afrezza. No way I wanted a repeat of the morning’s runaway blood sugar train and wait hours to come back down.

A short search through my knapsack revealed the little box. A quick video on YouTube showed me how to load the inhaler and take a drag. Then I put Pinkie’s (Dexcom CGM), receiver and my iPhone both, in my pocket, and said a little prayer. I had no idea if I’d inhaled properly and would see results and I was scared if I did, how low would I go?

The darn stuff works! Within 15 minutes my climb reversed and I was coming down. Within 45 minutes I was at 120, In an hour and 15 minutes Pinkie was telling me I was at 84 with the arrow going straight down, then 70, arrow still straight down, then 55. I felt fine, but who knew. Checking on my meter I was 86. I remembered when your blood sugar’s going up or down rapidly, Pinkie needs time to catch up and straighten herself out from the roller coaster. I took 2 glucose tablets to create some cushion. Within 2.5 hours I was 105 and I felt Afrezza had left my body

If I hadn’t already taken the 1 unit for lunch, and just taken the Afrezza, I think it would have worked just great. As I’ve been told, 4 units of Afrezza, the smallest dose, works like 2 units of rapid acting insulin in the body. I can definitely see the value of heading off skyrocketing highs and getting back in target range much faster than with injected insulin. That is always my frustration, how slow insulin is to get working.

While I can’t use Afrezza often because I am insulin sensitive and do eat a low carb diet, I’m going to want to have it around when what’s around me is not my norm.

So, listen up everyone in Copenhagen, London, Abu Dhabi, Singapore, Sydney, San Francisco and Portland where I’ll be coming through, Afrezza is in my backpack and if you see me taking a drag I’ll probably have a smile on my face. Rest assured, it’ll be the insulin I’m toking on, not a souvenir from Amsterdam ;-).

My father passed away sunday

Screen Shot 2017-11-07 at 6.37.50 PM.pngScreen Shot 2017-11-07 at 6.38.28 PM.png
My dad above at my wedding 16 years ago. As you can see, I tend to be a controller. But I think in the end, he controlled when he left us.
He died peacefully early Sunday morning after four years of Lewy’s Body Dementia and two years in a nursing home. He would have been 95 this month. The service was yesterday. It was a lovely day. The husband and I got a ride up to the nursing home from our friend Geri, she also carried in her car two other friends from the city.
It’s funny; at first I hesitated to invite people. I didn’t want anyone to feel obligated, but when friends began saying they wanted to come, I realized how special their gift to us was: their presence, love and kindness, and the history we’ve shared.
The husband and I printed cards Sunday night from my old greeting card designs. We picked two of my inspirational designs that were meaningful to my father. We handed them out at the service as a celebration of a life, and they told the story of a man always looking to get and give love.
My mother read the lovely poem I leave at the end, “Gone from my sight,” which she has always loved, and I do too now.  I spoke about my complex relationship with my father, thanked all the nurses and aides who had taken such good care of him these past two years and told them, “he died at home,” for the nursing home was his home. My brother shared his own remembrances. Then the husband moved everyone with his tearful and heartfelt tribute and gratitude to the people who made me, my parents. Gadget guy has a very tender heart.
About 23 people attended, which amazed us. Some friends of mine and my mother’s, my mother’s mah jong partners, some of the nurses and aids from my father’s unit. It felt rich and full. And, it brought home how moving it is that we rally round each other, gather and give solace when sorrow comes.
There was one surprise when several of us went to my mother’s apartment after the service and lunch. We brought my father’s belongings, which the nursing home had packed for us, into her apartment. Opening the first box we fingered sequin blouses and half used mascara. My mother laughed that maybe my father had a secret life. In fact, half the boxes were the life remnants of a fellow nursing home resident who must have died this same week, named Alice Greenberg. I’m sure it was the first time Alice left the home in years. This morning someone came and took Alice’s belongings back.
Today we donated much of my father’s clothes and the left over lunch from yesterday to the neighborhood homeless shelter. My mother said as we turned the goods over to a lovely young man, “Maybe I could volunteer here when I’m ready.” He welcomed her anytime. She is blessed with a year’s bereavement counseling sessions, which will take her back to the nursing home where she’s spent the last two years and loves the people.
My mother is remarkably strong. At 87 she is still feisty as a friend called her, walking, talking, laughing and exhausted. Since my brother and I have been here for days, reality has not yet set in. She also fell in love with my father these last few years and it was noticeable to all who knew them. It will hit, it will come, and go, and come……
And I am fine. My father had a long life, as I wrote two years ago, I fell in love with him these past few years, and he was so well cared for in the end. With my brother’s quick wit, humor brought us together this week as well as sadness. We’ve laughed a lot as we huddled around my father’s bed this past week. In fact, it often felt like we were in  episodes of Seinfeld or the next hit episode of Norway’s Slow TV.
If there’s any lesson for me it might be the renewed realization that
our shared humanity is paramount
you never know what’s going on for anyone else
be kind
just showing up is a gift you give
and I’ll discover what’s coming as it comes.
If you’ve been following this blog with me, now and then, thank you.

Gone From My Sight

I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, “There, she is gone.”

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me — not in her.
And, just at the moment when someone says, “There, she is gone,”
there are other eyes watching her coming, and other voices
ready to take up the glad shout, “Here she comes!”

And that is dying…


The universal language, a smile

Just spent the morning cleaning up my desktop. It’s like I can’t see what’s in the fridge if it’s not in the front, I don’t know what files I have if I can’t see them.

But I figured before I tossed this one, since it does make me feel a little lighter when I see it, I’d post it and then chuck it back in my docs.

You embrace yourself.pngWas one of my early drawings when in the 80’s I was designing inspirational cards. A smile doesn’t just make you feel closer to others when you share one, but happier yourself when you share one just with you.

5-day Diabetes Empowerment Summit. Tune in, it’s FREE!

Screen Shot 2017-10-29 at 9.41.40 AM.png
My amazing friend and fellow type 1, Daniele Hargenrader, is running her second diabetes summit. This time, she concentrates on empowering yourself to live with diabetes – and she’ll have 25 experts help you do just that.

It’s FREE and it runs from November 1 through November 6. Tune in here.

Screen Shot 2017-10-29 at 10.33.19 AM.png

I can’t help but add, my book, “The ABCs Of Loving Yourself With Diabetes” is a perfect tool to support you in your self-love and self-care. And now, it’s less than $10 on Amazon.

About the summit from Daniele:

How well do you take care of your emotional health around living with diabetes?

People with diabetes were asked about how they nurture themselves. 60% stated that they do NOT have tools to help build consistent habits around creating a mindset of empowerment around living with diabetes. Are you one of them?

Join 25+ myself plus other top doctors, experts, coaches, authors, and more, most of whom live with diabetes, and learn our best lessons, systems, and frameworks to help overcome the mental and emotional barriers of living with diabetes.

Most medical professionals never mention the incredible importance of fortifying our emotional health practices while living with chronic disease, because they truly don’t/can’t understand the true day to day lived experience of diabetesthemselves.

We took matters into our own hands to bridge that gap by creating The Diabetes Empowerment Summit!

Your host, Daniele Hargenrader, BSNS, CHC, CPT created The Diabetes Empowerment Summit because conventional medicine failed her on her journey with type 1 diabetes because nobody ever mentioned how crucial it was to address the extreme emotional side of living with chronic illness, or how to find a peer support system to learn from and grow with. This led to many years of an eating disorder, clinical depression, obesity, and an overall sense of helplessness.

It’s now her mission to help make sure it doesn’t fail you!

Join us if you have ANY TYPE of diabetes, or you love or care for someone who does. Health care providers very much included and welcome! Will you be there?

The Diabetes Empowerment Summit will help you:

  • Learn how to succeed in life with diabetes emotionally, physically, spiritually, and mentally through learning HOW to cultivate the mindset of empowerment around day to day choices through education & easily actionable self-love/care practices
  • Understand how to build life-long friendships and accountability partners, gain the support of medical professionals & coaches, and create and empowering, dependable network of peers who truly “get it” when it comes to living with diabetes
  • Finally understand what the term “psychosocial” (that, as of late, gets thrown around clinically but is never put into terms all of us can first understand, and then do something to improve once we do) really means regarding living life with diabetes, WHY it is so important to understand as a patient, caregiver, or clinician, and learn a wide variety of proven tools we can all use to change our psychosocial experience with chronic disease for life.
  • Learn how to navigate the intense emotional overwhelm and loneliness that often comes with feeling alone in our lives with diabetes and other chronic diseases
  • Understand how to massively increase self-confidence & the internal desire (inspiration) to participate in the necessary day to day, hour to hour practices that it takes for people with diabetes to live happy and healthy

The Diabetes Empowerment Summit is online and free from November 1-5, 2017!

Register for FREE here!

If you learn even one bit of information or a different perspective from one presenter that changes the way you think for the better, it will absolutely be worth it!

Looking forward to seeing you at the summit!