Tag Archives: diabetes

Dreamer stage.

September 6, 2018 – 10:11 am

I’ve been reading, with great envy, about diabetes conferences on other continents lately. Specifically, the recent Australasian Diabetes Congress in Australia, and the upcoming EASD (European Association for the Study of Diabetes) conference in Europe.

Both of these appeal to me because they feature patient presentations and social media events either as part of the event or coordinated around the event. But there’s also an appeal to me because these gatherings are continental, and it makes me wonder: Why can’t we do something like that here? In North America?

Why can’t there be a North American Diabetes Congress? Why can’t there be a Pan-American Diabetes Summit?

I know what you’re thinking: Too much money! How are you going to get patients there? What do you think you can cover? What about meeting space, exhibit space, agendas, speakers?

Okay, I’m not an event organizer. But I can ask… why can’t this be done? North America, and the Americas including Central America and the Caribbean and even South America, cover a widely diverse group of people. Our challenges to get access to care, drugs, devices, and education are in many ways unique to our hemisphere.

There are also unique voices in each country that we can all learn from. They’re writing, broadcasting, and advocating in ways that I see but don’t completely understand yet. I’d like to see if some of what they do can translate to positive advocacy here too.

Right now, I’m only looking at the positive aspects of something like this. So don’t dump on me about how it’s impossible, companies won’t contribute, if companies do contribute I’m a sellout, people won’t be able to travel far, or the logistics are too difficult.

I’m still in the dreamer stage. I know this could be very good, even if I only have a rough idea of what “this” really is. So don’t harsh my mellow.

I refuse to think that we should be separated by distance or resources. I believe there is a lot we can learn from each other. I want to think bigger than diabetes type or country or age or language.

Why can’t we do it?

By StephenS | Posted in Events | Also tagged , | Comments (4)

Readiness realities.

September 4, 2018 – 11:28 am

I can remember when this blog was new, and I would write about anything and everything that inspired me, even a little bit, almost at the very moment that it inspired me. I would often participate in the weekly #DSMA Twitter chats and find something interesting to write about (see: My Week With Celiac).

That hasn’t happened for some time. However, last week’s chat (moderated by Chris Memering) did inspire me to think about, and share, my guidelines on emergency preparedness when it comes to diabetes.

Let’s get a couple of things out of the way here, right at the very beginning: I am not an expert at preparing for emergencies. Also, when I talk about emergencies, I’m not just talking about earthquakes or hurricanes or zombie apocalypses. You’ll want to prepare for those like you always would: plenty of extra food and water, ice, garlic and crosses and whatever else you want to have on hand just in case.

When I talk about emergencies, I’m also talking about the things we don’t always consider: specifically, medical emergencies, either our own or those affecting those close to us. I had an emergency appendectomy last year. A week and a half ago, The Great Spousal Unit took a terrible fall down a flight of stairs. What about those situations?

Some experts might disagree with these ideas of emergency preparedness. But there are two things we do that have been very helpful…

1. That diabetes stuff that I always have to put together when I travel? The extra insulin, the extra infusion sets, CGM sensors, insulin pens and pen needles, etc… I keep that at the ready every single day at home. If I have to get out of the house quickly, I can get it together in less than a minute.

I won’t be set for months with this stuff, but I should be okay for at least a couple of weeks if necessary. When I was in the hospital with a bad appendix (and later, recovering from same), I didn’t have to ask anyone to gather this and that for me. I just said, “Get the box, the insulin cooler next to it, add insulin, and bring it to me”.

2. I have all of my medical information written down. This includes the model of insulin pump I’m using (and the serial number). It includes all of the prescription drugs I take on a daily basis. It includes models of CGM sensors and infusion sets.

It also includes the names and phone numbers of my entire medical team: primary doctor, endocrinologist, etc. Even if they don’t need to be consulted in a crisis, they need to be informed.

I keep this information on my iPad at home, so it’s easily mobile if need be. But I also have it printed out, in case I can’t keep the iPad charged, it gets broken somehow, or no one thinks to try to access the information there.

Hey, I admit that I’m not the best at preparing for an emergency. These two tips may not seem like much. But they give me peace of mind, or at least one less thing to worry about when it comes to managing diabetes, and managing life, through an emergency.

By StephenS | Posted in Random Glucose | Also tagged , | Comments (1)

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 | Also tagged , , | Comments (1)

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 | Also 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 | Also tagged , | Comments (2)