Online diabetes peer-support… now a resource to guide you

Something’s new in the world of diabetes online social media and it isn’t a new site. Rather, it’s a simple, engaging 3-page guide to steer you to excellent and trustworthy diabetes web sites. Sites where you’ll find a wealth of both general and very specific information, and, be able to connect with others living with diabetes.

I’m impressed by the collaboration between medical professionals and diabetes advocates. Together they did the hard work to make the wealth of diabetes information and support found online more attainable and useful to both people with diabetes and diabetes health providers alike.

Knowing this started as a conversation some years ago, I’m also inspired by how mountains can move when people decide to move them.

Screen Shot 2018-02-23 at 11.27.39 AM.png

This effort was led by former President of the American Association of Diabetes Educators, Hope Warshaw,  and founder of DiabetesDaily, David Edelman, who had the help of many diabetes advocates. The guide points you to vetted diabetes peer support communities, blogs, news and magazine sites, organizations, government resources and advocacy organizations.

True, this community of patient resources and patient compassion has existed on the internet for some time. What’s different is now you have a guide where and how to find them.

I cannot stress enough how taking advantage of the information and emotional support online, from people living through what you’re living through, can change your every day life.

ALERT: Learning, and hooking in online, does not replace your health care providers. This rich world adds to your knowledge and support by offering communities where you may make new acquaintances, feel less alone or inspired to get involved, and you can ask questions and get real, lived advice.

As someone, myself, in this online diabetes community, I have made stellar friends and acquaintances, I constantly learn what’s new and what’s coming, and I often get answers to questions I would never think to ask my doctor. And I’m healthier, and more engaged in my self-management, for it.

Warshaw and Edelman share a letter why this effort began and what it truly offers – not just to people living with diabetes but those who treat them and care for them.

As a diabetes nurse, educator, dietitian or physician, as a community health worker, social worker or psychologist who works with people who have diabetes, you will benefit from seeing what’s being exchanged online between people with diabetes. You’ll get deeper insights what diabetes is like to live with and you’ll be able to give your patients and clients a resource that may help them get more motivated, committed and engaged in their own care.

Susannah Fox, healthcare and information technology researcher and former Chief Technology Officer of the U.S. Department of Health and Human Services, does a great job outlining the benefits of online peer support in this video.

 

Speaking at Stanford Medx in April, plus HuffPost #5 – The Engines of Chronic Care

 

Screen Shot 2018-02-22 at 4.32.33 PM.pngApril 28-30 I’ll be at Stanford Medicine X presenting the Flourishing Treatment Approach (FTA) I’ve been sharing the FTA with providers around the world these past three years.

The conference is new for me, but seems perfectly aligned with what I’ve been doing. Stanford Medx claims the territory – the intersection between practitioner and patient. This April’s theme: create disruption in medical education through partnership with patients and interprofessional collaboration. Indeed!

My disruption, the FTA, addresses how most HCPs world with people who have chronic illness. Their treatment is based on machine-thinking, not what works for humans. I don’t blame anyone, it’s what they’ve learned.

Practitioners are trained almost exclusively in delivering acute care where machine-values – precision, accuracy, perfection, cause and effect – are worth striving for. But for treating people with chronic conditions we need values that speak to human striving:  relationship, trust, safety, strengths, connection inspiration. We need not scalpels and band aids but trust, partnership, dialogue and meeting people where they are. These qualities are what move more people to invest in their daily care.

So today, I share with you my fifth HuffPost article in my line up of top 10: The Engines of Chronic Care: Hardware and Heartware. Below a brief excerpt:

“We know when providers express empathy their, and their patients’, outcomes improve. Peer-mentoring also improves patients’ management and clinical outcomes, and, with the lowest-tech device imaginable — another human being to listen, engage and connect with.

So why is heartware overlooked?…”

Full article here

 

 

#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

Screen Shot 2018-02-05 at 9.54.22 PM.png

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.

Screen Shot 2018-02-05 at 9.36.21 PM.png

#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.

IMG_5793.jpg

#2 HuffPost post: Amazingly delicious low-carb yummies

Screen Shot 2018-01-24 at 9.53.35 AM.png

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.

 

IMG_8204.jpgIMG_E8206.jpg

 

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.

vineyard.jpgprinthie.jpgGeese.jpgBar.jpgIMG_8100.JPGunnamed.png