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

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.

August 23, 2018 – 10:11 am Categories: Support | Comments (6)

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

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.

August 21, 2018 – 10:11 am Categories: Events | Comments (2)

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The Language of Gratitude.

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.

August 14, 2018 – 12:46 pm Categories: language | Comments (1)

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8 Things: Why I still love to write.

Happy to say I’m on vacation for about the next ten days. I don’t know how much new stuff you’ll see here, but look for me on social media next weekend when #AADE18 comes to my city. I should have a lot to talk about then. In the meantime…

I’ve heard some talk recently about how blogging is falling out of favor these days, and how diabetes blogging in particular may have already seen its heyday.

I don’t know if that’s true. I’m always the last to know things anyway, and while you probably aren’t reading as many diabetes blogs as you once were, there are still reasons for it to continue.

So while I have a moment, here are 8 reasons why I am still proud to say that I’m a diabetes blogger:

1. I believe in telling my story. Oh sure, you can get that “me too” moment from someone’s tweet or Facebook GIF, but a meme doesn’t quite tell the entire story, even if it gets a lot of notice in the moment.

How could I tell about nearly dying on the operating table last year in 280 characters or less? What about my trip to Europe and the diabetes management required to make it happen? Those are things that require more elaboration.

2. I believe in sharing information. Whether talking about a workshop or conference I’ve attended, or letting you know about a chance for you to attend an upcoming workshop or conference, I still feel a responsibility to share what I learn.

The informational posts I publish, like this week’s information on DPPs, DSMEs, and DSMPs, are the ones I really hope you’ll read. Knowledge is still power, and that’s why it’s important for all of us to stay informed. I like trying to help with that.

3. I don’t really care if you’re still reading or not. There, I said it. It’s not that I’m not grateful you’re reading; in fact, I’m exceptionally grateful you’re reading. But if I let page views dictate what I talked about, I probably would have become a basket case long ago. And my page views probably wouldn’t be much different than they are today.

This is one that’s hard to understand unless you’ve accrued a certain amount of mileage in life. But I can tell you that producing something meaningful, whether it’s meaningful to me or to you, is enough for me.

4. I don’t know how long it will last. I’ve often said that I can’t keep writing here forever. I won’t… believe that.

But I don’t know yet when the end will come. I know when it does, I will miss it terribly. So I look forward to continuing to write as long as I can.

5. Despite that, I don’t fear change. It’s true that the only constant in our lives is change. However my online advocacy changes in the coming years, it’s okay as long as it’s productive.

And I like to think that once I’m no longer blogging, it will be because there are many other worthy writers to take my place.

6. More than ever, patients deserve a voice. This should really be at the top of the list.

Patients are getting more of a voice, that’s for sure. But there are so many individuals, be they patients themselves, healthcare professionals, or the general public who still haven’t heard our stories. They don’t know anything about the power of the patient voice. Here’s hoping we can continue to show them what it’s all about.

7. There’s always another story waiting to be told. I don’t know what the story is, or where I’ll find it. But the thrill of finding that story and delivering on the promise of sharing it inspires me every day.

8. It makes me feel good. And connected. And useful. Every time I click “Publish”, I get a dopamine rush to beat the band. It’s good for my mental well-being, on top of all of the other good (I hope) it does. Even when I’m on vacation.
 
 
Here’s something that’s true for everyone writing a blog, regardless of the subject matter: Being free to express our thoughts, share information, and connect with others gives us a sense of purpose, and a sense of belonging. There are many reasons to say goodbye to blogging… but at least 8 that leave me feeling happy about continuing. For now. 😉

August 10, 2018 – 10:11 am Categories: Advocacy | Comments (2)

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Reading the Alphabet Soup

It seems like the more I move along this advocacy trail, the more I’m reminded that I still have an awful lot to learn.

The work I do as part of my state’s Advisory Council on Health and Wellness is a prime example. For the record, I live with Type 1 Diabetes. But the majority of People With Diabetes in my state are living with Type 2. So I’ve had to learn a lot about these subjects lately:
 
 
Diabetes Prevention Programs – The title pretty much says it all about these programs geared toward the booming population with prediabetes. The point is, where possible, to keep prediabetes from becoming Type 2 Diabetes. Diabetes Prevention Programs follow the National Diabetes Prevention Program curriculum developed by the U.S. Centers for Disease Control and Prevention.

The DPP requires a full year commitment. You’re encouraged to develop a diet, exercise, and overall diabetes management routine that becomes a habit over that time.

In a DPP, you’re concentrating your efforts on changing diet and exercise to achieve a 5% to 7% weight loss in the first six months. Yes, you will be weighed at each session. But there’s also a good ingredient of a DPP, in that participants are encouraged to “discuss strategies for self-monitoring of diet and physical activity, building participant self-efficacy and social support to maintain lifestyle changes, and problem-solving to overcome common weight loss, physical activity, and healthy eating challenges”.

The good part about DPPs is that they seem to work: According to an NIDDK study, people with prediabetes who lost 5% to 7% of their body weight had a 58% lower chance of being diagnosed with Type 2 Diabetes.

Diabetes Self-Management Education Programs – Again, geared toward Type 2s, DSMEs aim to provide a Person With Diabetes with information that will potentially help them manage their diabetes better than before.

The DSMEs can be ongoing, allowing the Person With Diabetes a chance to make their progress permanent. The program focuses on three fundamental elements: Nutrition, Education, and Emotional Support. These can be delivered at various points in someone’s life with diabetes, including diagnosis, annually, after experiencing complications, and during transitions like aging and moving to a care facility, or changing insurances or health care professionals.

DSMEs are typically run by diabetes educators, and the fact is that there are too few diabetes educators out there. So it’s hard to get new DSMEs started. The good news is that many medical plans will cover some or all of the costs of a DSME.

Diabetes Self-Management Programs – The difference between DSMEs and DSMPs (besides that one word) is that the DSMP is typically six weeks, while a DSME program can be ongoing.

DSMPs can also be taught by non-health professionals, including those living with diabetes. They have to follow a strict set of materials developed by the diabetes team at Stanford University, and be trained to run the program. DSMPs have a pretty good track record of success too.
 
 
Now, the part that we haven’t discussed yet is that the cost to implement these programs vary. The cost is usually per participant. When you have limited resources, you want to make sure people have a choice; but you also have to get the most bang for your public service buck, so to speak. So while each of these programs have their own merits, they also have their own costs.

If you’d have asked my opinion before I looked into these programs, I would have told you that there’s no way these programs could do any good. But they do. All the more reason why none of us should make decisions without knowing as many of the facts as possible.

I’m learning a whole new alphabet soup of acronyms this year, but I’m glad I am. People deserve to get the assistance they need in living the best life they can. And if I can, I’d like to help them do that.

August 7, 2018 – 10:11 am Categories: Type 2 | Comments (4)

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