Monthly Archives: August 2018

Choices, and the Fear Of Missing Out

August 30, 2018 – 10:11 am

It’s funny… I’ve been asked more lately about why I haven’t moved away from my Animas Vibe insulin pump than I’ve been asked why I have remained on this pump.

For the benefit of someone who might be in a similar situation, or just for the few of you who might actually be interested in my opinion, here’s my thinking on the subject today:

First of all, I don’t have to hurry to another pump. My Animas warranty is still good until January 2020. That’s nearly a year and a half. For starters, let’s go with that.

I will admit that I’m not particularly fond of my Animas pump. I don’t hate it either. In all honesty, I’m agnostic when it comes to this device. But it works, and there’s something to be said for reliability. For the record, I use Medtronic MiniMed Quick Set infusion sets, which I’ve used even before starting on Animas. They seem to work best for me.

I have a few choices when considering what to do…

Thanks to Medtronic, which took over customer care from Animas, I can go right now from my current pump to the Medtronic 670g. The appeal of that is obvious, owing to the hybrid closed loop nature of the system. Also, I have friends and acquaintances using the 670g, and all of them either like it or love it.

The biggest issue for me in this case is that the Medtronic CGM still does not lay flat on the skin. If I have to tape it down to keep it on, that’s a deal breaker for me. If they re-engineer the CGM so it will lay flat without taping it down? Medtronic is definitely in consideration.

One of the other intriguing ideas available to me is to create my own DIY closed loop system. I’m already using the Dexcom G5, and I have an old Medtronic pump (my first pump), which might be compatible with one or more of the systems out there.

The idea of doing that really appeals to me. On top of the appeal of a functional artificial pancreas system, there’s also the appeal that on top of my other pumping possibilities, I would always have this option in my back pocket just in case nothing else seems to be as good.

But more than anything else, when I think about why I don’t make a choice at this time, it comes down to one overriding issue: FOMO, or Fear Of Missing Out.

I’ve got nearly a year and a half to go on my current pump’s warranty. My biggest regret in making a change would be if I went to another pump and then, let’s say six months later, something new and wonderful was approved by the FDA that I would love to be using. Only by that time, I would be just six months into a four-year pump commitment that I couldn’t get out of.

I had kind of the reverse happen when Animas decided to close up about two years into my commitment with them. I’m not unhappy with my choice, but I’m unhappy that the company I chose to make the commitment with could no longer uphold their end of the bargain.

Anyway, with all this time left on my warranty, I’ve decided to wait a while and see what happens. I have no idea what’s coming in the next 17 or 18 months. I’m just grateful to have options.

Choice matters for People With Diabetes. Let me ask you:

How would you feel if you were in my position? Would you wait? Or would you make a change?

By StephenS | Posted in Pumps | Tagged , , , | Comments (1)

Recent Technology Developments: Where are we headed?

August 28, 2018 – 10:11 am

I don’t want to bury the lead here. Okay, I want to bury the lead slightly, because I’m hoping you’ll take the time to think about that question from every possible angle.

Okay… with that in mind, where are recent diabetes technology advancements headed?

I really have no freaking idea.

There have been developments though, and I’m more than interested in their impact on our community. Some of it involves rollout of new devices. Some of it is a form of consolidation within industry. Some of it involves individuals taking things into their own hands and accomplishing what industry has been unable to accomplish yet.

As far as not knowing about every last thing? That’s okay with me. Because things change all the time, especially when it comes to technology. And even if I knew the implications of everything today, when things change tomorrow, I’ll be right back where I am at this moment.

We know that in most cases, change is good for the technology landscape. Innovation and success in innovation often leads to better products down the road, even if the innovation is only improving on an existing idea.

You have to admit… it’s a pretty exciting time for diabetes technology. Consider these tech innovations that have hit our world in the last year or two:

– Medtronic 670g hybrid closed loop system
– Freestyle Libre CGM (no calibrations); followed shortly by
– Dexcom G6 CGM (no calibrations)
– Improvements of and an increase in the prevalence of diabetes management apps
– The $250 Biohack That’s Revolutionizing Life With Diabetes
(from Bloomberg)

I have to admit that I haven’t followed diabetes technology developments as much as I used to. I’m just too busy. A couple of years ago, I would have been all over each of those bullet points. Today, each new development gets a quick read from me, and then it’s back to the advocacy part of my diabetes life.

But I’m still excited about the next shiny new diabetes technology toy that rolls out from one place or another. I don’t expect everything to be perfect for everyone. But let’s face it… Banting and Best had to start somewhere too.

Here’s hoping that today’s efforts result in tools that will have impacts that last just as long and help just as many people as their efforts.

By StephenS | Posted in Diabetes Technology | Tagged | Comments (0)

My best moment from #AADE18 didn’t happen at AADE

August 23, 2018 – 10:11 am

I told this story a couple of times this past weekend at AADE, and I thought it might be worth retelling here. It involves a memory from many years ago, and reacquaintance. In short:

The best story of my AADE experience did not happen at AADE.

The annual meeting of the American Association of Diabetes Educators was at the Baltimore Convention Center, in the heart of the city where I live and work. In fact, until about nine years ago, I used to work very close to the convention center.

Back then, I used to go through a building across the street from where I worked, directly across the street from the convention center, every morning on my way in to the office (I actually had an office then). The building had a newsstand in it, and still does.

Running the newsstand was a diminutive woman who was generally nice, but when the moment called for it, could be salty as hell. You didn’t want to get on her bad side.

Now, let’s flash back 15 or 16 years… when I was 11 or 12 years into diabetes… but before insulin pumps, CGMs, and way before I found the Diabetes Online Community. We’re talking Friday morning, in the spring or summer of 2002 or 2003.

I’m headed into work that morning, and I could feel that my blood sugar was crashing. I got off the subway and somehow navigated the block and a half to get to the newsstand. By the time I got there, I was sweating through everything, including the suit I was wearing. I must have looked awful.

I can remember there must have been a large lottery jackpot coming up or something, because there were more people than usual in the shop, and I had trouble getting to the back to get some juice. Eventually, I just slumped on the floor, unable to move any more.

People were looking at me like I was drunk, or under the influence of drugs. I’ve had a couple of moments like this in the city, where passersby shoot cell phone videos instead of stopping to assist you. If things go really bad, they might call the police, who might cart you off to the city lockup, and people around here know if you go into the lockup on Friday, you’re probably not coming out until at least Monday.

So here I am, unable to move in a newsstand full of people. And suddenly, this diminutive woman races out from behind her counter, leaving her lottery customers waiting and looking at their watches. “What do you need?”… “How can I help you?”.

I think I just muttered “juice”, and she raced back and got me a bottle of juice, which I finished in no time. Then she got another. I was about halfway through with that before I started coming out of my funk and she went back to her customers. She never charged me for the juice.

I took an extended break from work the next day to go over and pay her, thank her, and discuss the moment. We didn’t speak about it again.

Eventually, my company moved its offices about five minutes away. That was 2009, nine years ago. Not working close by anymore, I didn’t return to the newsstand.

Fast forward to last Friday. I took the subway for part of my commute to get to the convention center that day, and I really wanted a soda, and since that building is right across the street…

I walked into the newsstand, and she was not there. The only people in the place were what looked like a couple of regular lottery customers, who, as I recall, used to watch the place for my hero when she needed to step out for a minute. We waited and chatted together.

Then suddenly, she walked through the door, and as soon as she saw me, her eyes got big and she shouted “How are you?”! I flatly retorted, “I can’t believe you still remember me”. She said, “Oh, you never forget a day like that”.

I told her I was on my way to the convention center, why I was there, and that later in the day, I would be speaking about life with diabetes as part of a discussion panel at the conference. I took the time to remind her that if it wasn’t for her help all those years ago, I might not be speaking that day or any other.

I can’t stop thinking about the impact of that moment in time.

So my best story about AADE did not happen at AADE. It happened years ago, and was relived for a brief moment last Friday. As long as I live, I will never forget that day, this person’s selflessness, and the unknown opportunities it would present much later on.

By StephenS | Posted in Support | Tagged , , | Comments (6)

#AADE18 – So Much to Do, So Much to Learn

August 21, 2018 – 10:11 am

I’m back in this space after attending the annual meeting of the American Association of Diabetes Educators. This year’s conference was here in Baltimore, which means 1) I was able to attend AADE for the first time, and 2) I was able to save a lot of money, which is a pretty big deal for me right now.

Diabetes educators are a unique group: smart, organized, caring beyond what I’ve seen from other medical professionals, and curious to the point of amazement at the things that are changing the diabetes landscape. I know, they’re all working to get their CE credits. But if that’s all there was to it, I wouldn’t have seen multiple people line up after each presentation to ask questions and make comments.

I was fairly busy over the weekend. I participated on the panel during the #DSMA Live event that happened on Thursday night, along with (of course) Cherise Shockley, Scott Johnson, Jasmine Gonzalvo (winner of AADE’s 2018 Strategic Initiative Award), and #DSMA veteran and CDE Chris Memering. But that was just the beginning.

Friday, I was fortunate to sit on a panel discussion called Listen and Learn: The Perspectives of a Panel of People With Diabetes. Nicole Bereolos moderated, and I sat at the table with Christel Marchand Aprigliano (CEO of DPAC), Anna Norton (CEO of Diabetes Sisters), and Shelby Kinnaird (writer at the Diabetic Foodie blog). I don’t know if I added much to the conversation, but I’m honored to be part of any conversation including these accomplished individuals.

Friday evening, I accepted an invitation to be part of something sponsored by One Drop, which provides a management platform for People With Diabetes. The One Drop Salon was the first of its kind, a conversation over dinner between diabetes educators, nurse practitioners, diabetes advocates, and representatives of One Drop. It was a super evening, and for the record, One Drop hopes to host more of these in the future. I can share that while the conversation was lively, there was no One Drop marketing pitch, and throughout the dinner, the conversation remained on diabetes and how best to serve our individual communities. Disclosure: One Drop paid for my dinner that evening. All opinions, as always, are my own.

That brings us to Saturday. Saturday morning, the proceedings started at 7:30 a.m. (on my vacation) with a video project I was lucky to be a part of. The video was put together by Mytonomy, a cloud-based diabetes management tool for PWDs and care teams. It focuses on the #LanguageMatters theme I and others have been talking about for a while. It features at least a couple of people you might recognize, like Renza Scibilia and Grumpy Pumper Chris Aldred. And me. It went over well, and it was surreal seeing my face (with every flaw) and the faces of my online friends on multiple huge screens in front of a couple thousand people. Again, a huge honor, and I can’t thank Mytonomy and Deborah DeMore Greenwood enough for making this happen and including me. Disclosure again: I was part of the video, but in case you were wondering, I did not receive anything in return for my participation.
Here’s a look:

Maybe my favorite session on Saturday was titled “You Built a What?!” Preparing for Conversations about Non-Commercial Automated Insulin Delivery Devices. Two Certified Diabetes Educators using DIY artificial pancreas systems! They covered the various options, the nuts and bolts of do-it-yourself closed loop systems, and cost. One of the presenters addressed concerns about safety by relating her own life with diabetes in the 1970s, peeing on strips to measure blood glucose and using regular and NPH insulins. Compared to that, she said, using a DIY closed loop system can be much safer.

Sunday, I got to see Cherise again, along with Hope Warshaw, Christina Roth (CEO of College Diabetes Network), Amy Tenderich (Editor-in-Chief at Diabetes Mine) and David Edelman of Diabetes Daily. Their session was The Educator’s Role in Advocating Peer Support: Why, When, and How?. Each member of the panel talked about online peer support and what it means for the overall health and well-being of People With Diabetes.

As you can probably tell, AADE has done a fantastic job of staying relevant, embracing the latest in diabetes news, technology, and peer support. Monday’s keynote included Anna Norton, Michelle Litchman, and Liz Beverly, and Mary De Groot, and focused on Peer Support. Imagine all those diabetes educators soaking up all of the knowledge on peer support and what it means to you and me.

I sandwiched in a couple of stints in the Twitter Lounge in the exhibit hall on Friday and Sunday, where I was able to sign a few people up to Twitter and give them pointers on engaging with our community.

Yes, it was a very full weekend plus. Next year’s AADE conference will be in Houston, and I hope to be there. But for now, I can be happy knowing I met some people I’ve known online for a while but never met in person. I spent time with friends I hadn’t seen for a while. I learned a lot (that I can’t include in this already long blog post). I’m grateful to the people who allowed me to participate in their initiatives. I was honored to be able to share my feelings on a variety of subjects.

There was much to do, and much to learn. I go back to work today feeling fulfilled.

By StephenS | Posted in Events | Tagged , , | Comments (2)

The Language of Gratitude.

August 14, 2018 – 12:46 pm

Language has been a recurring theme around here for some time, and it’s really interesting the way communication is intertwined throughout our lives. If I were to take a guess, I’d say that at least half the projects that didn’t work out or the friendships that faded out in my life were because I neglected to remember that what we say, or don’t say, every day makes a difference. Sometimes to us, often to others.

These days, patients are getting really good at fighting for the things that are important to them: affordable access to drugs, treatment that helps rather than judges, diabetes truths rather than diabetes myths. But… how much time do we spend sharing what we’ve learned? How much time do we spend thanking those who have helped us along the way?

Some of us are good at that. I’m certainly better at it than I used to be. And sometimes… we just forget. Or worse, we figure that since we’re the ones living with diabetes, when things work out for us, we’re just getting what we deserve and we don’t even need to consider the fact that someone else might have had to make a sacrifice to please us.

We can certainly get by with that attitude. But we’re not going to make a lot of long term friends in the process.

So, when my endocrinologist finds a sample or two for me to take home, I’m sure to thank her.

When the receptionist at my GP’s office finds a way to get me an appointment today because I’m sick today, I thank them.

When my diabetes friends take the time to ask how I’m doing, I respond in kind and try not to talk about myself too much. I’m still working on that one.

When people raise money for research and better care for People With Diabetes, I thank them.

When medical device companies overnight a replacement for a broken part, I am appreciative.

Most of all, I truly try to practice the art of paying it forward. For someone else’s sake, and for my own too.

These things don’t cost me anything. Occasionally, it might mean saying something nice about a person or company that I haven’t been thinking nice things about all the time. But the language of gratitude requires us to recognize each effort on our behalf without remembering the real or perceived slights we’ve encountered along the way.

It’s a learned practice. It’s something I have to remind myself to do all the time. But when I put the language of gratitude into practice, I find myself feeling better. And I can’t put a price on that.

By StephenS | Posted in language | Tagged , , | Comments (1)
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