Author Archives: StephenS

Hello… I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 Diabetes since January 1991. I’ve been a pump user since April 2010, and I’m currently wearing the Animas Vibe pump. Also wearing the Dexcom G5 continuous glucose monitor.

I found the Diabetes Online Community in the summer/fall of 2011, and that discovery has changed my life. I started this blog in April 2012, and since then, my diabetes advocacy has continued to grow. Among other achievements, I’ve attended and spoken up at FDA workshops and participated in clinical trials.

I’ve been thrilled to serve as a facilitator for the Diabetes UnConference. And I’ve been honored to volunteer for Diabetes Patient Advocacy Coalition. You should Google both of those.

I’m currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where I am co-chair of the Diabetes committee. In addition, I’m part of the 2018 Reader Panel at Diabetes Forecast magazine.

I’m always searching for the perfect balance between the highs and lows of my blood glucose level and my life… always searching for the Happy Medium.

Anything you’d like to share? Please let me know… I’d love to hear from you.

Diabetes By The Numbers.

July 17, 2015 – 9:20 am

Today begins a new chapter here.

Owing to my (very long ago) past in radio and advertising, and the fact that I always thought it might be fun, I’ve wanted to do a podcast for some time.

In the last year and a half, I started to feel like that wasn’t going to happen. Because, let’s face it, there are many diabetes podcasts out there, and they are all good. Why create another program where I sit with someone for 45 minutes or an hour, talk about diabetes, and say “Thank you for listening”? If I was going to dive in, I needed to offer something different.

With the help of another patient advocate at the HeatheVoices conference in April, I was able to start thinking about it again (thanks Josh!). His idea: Make the podcast much shorter.

That’s what I’ve done. Each podcast should be ten minutes or so, focusing on diabetes news of the day. I’m not going to hold myself to that; if the content is important and it goes eleven or twelve minutes, so be it. Today’s podcast is right around ten minutes.

I worked hard to get a perfect sound from the room in my home that I’m recording from. To put it bluntly, that’s not going to happen, though you will be able to hear me and understand me. In addition, I’ve long realized that my voice is not exactly perfect, and after not speaking into a microphone for close to 20 years, I’m a little rusty. But I also realized long ago that the real success in endeavors like this lies in the personalities being interviewed.

A great example is today’s interview with Katy Killilea. She’s a superb writer and an engaging talker, with super advice about 504 plans for kids going to school with diabetes this fall. If you don’t know a 504 plan from Formula 409, listen to the podcast and click on the very helpful links below.

It’s called Diabetes By The Numbers (listen to the end… you’ll get it). Today is episode one. Just like this blog, I suspect that the podcast will grow and evolve over time, and a year from now, it may not sound anything like it does today. That’s the way things usually work when they work best for me.

DBTN

Have a listen. Do you have any good ideas for a future podcast? Want to be interviewed? Feel free to let me know.

And for the first time, let me say: Thanks for listening.
 
 
Reference Material – Click below for more information on this topic

Children With Diabetes – Sample 504 Plans

American Diabetes Association – 504 Plan Information

JDRF – 504 Plan Information

JDRF – 504 Plans in College

National Diabetes Education Program – Helping the Student with Diabetes Succeed: A Guide for School Personnel
 
 

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Close encounters of the online kind.

July 15, 2015 – 9:08 am

Okay, so my offline life with diabetes doesn’t offer much interaction right now.

On the other hand, my online diabetes life is chock full of interaction.

In fact, it keeps me on my toes all the time.

I never connected with the Diabetes Community at all before finding the DOC back in 2011. Never even heard of such a thing. Now, there are many people who sort of live inside of my computer or mobile device, whom I read and trust and admire. And yes, interact with.

I write this blog for a variety of reasons. I write to add my voice to the conversation. I write to advocate so others can add their voices to the conversation. I write to inform, when I can. And often, I write just for me. Because I like to write. Because, when I’m gone, I hope to have left a sliver of what my life was like here in the 2000-teens, with Type 1 Diabetes as a constant companion.

So sometimes, I’ll write something just for my own sake, recounting things that make me happy, even if it doesn’t necessarily move the diabetes needle further toward a cure. Occasionally, in those moments when I worry that my mind will go at some point (Mr. Glass Half Empty), I take comfort in the knowledge that at least I’ll be able to go back and see who my friends were, even if I can’t remember all their names by then. I’ll just have to remember the web address. That’s what Favorites are for, I guess.

I can’t tell you how much fun I have moderating the DSMA Twitter chats every so often. Even when my brain is fried from a long, hard day at my job, in the middle of a cold, dark winter, when my day starts at 4:30 a.m. and DSMA finishes late on the east coast and I’m having trouble keeping my eyes open, I get such a kick from the thrill of a newbie’s reaction to being part of the conversation, or a timely wisecrack from a DSMA veteran (who’s also a part-time DSMA moderator).

It’s weird though. I consider most of the people I interact with online as my friends, even though I don’t know many of them all that much. When they are wronged, when people call them out online, when people try to shame or stigmatize their disease, what they’ve done or how they live their lives, I’m ready to defend them right away. Why? Because someone is trying to hurt my friends. You don’t mess with my friends.

Also, because they’ve been there for me more times than I can count.

We all engage in the ways that work best for us… or are most convenient for us. But together, all of us are part of a greater community (see what I did there?). Being part of a greater community carries with it a certain amount of responsibility. Not all of us have an equal amount of responsibility at the same time, all the time. It comes and goes, depending on a number of factors.

We also have varying amounts of opportunity, depending on a number of factors. I think of opportunity differently. When I have an opportunity to do something, I feel almost compelled to seize on it. Of course, not all opportunities are the same either. What I’m saying is, we’re faced with questions of whether to engage or not engage all the time.

It’s not about repaying a debt to the ether that I’ve somehow concocted in my mind. Again, it’s about being part of a community, being a building block of a group that makes greater things happen, not just by myself, but by holding up my part of the foundation of The House That Makes Life Better for everyone living with and affected by diabetes.

I may have more of an impact online than offline most times. That may have a lot, or very little, to do with me. But I’m happy to engage in any way I can, so all my friends living with and affected by diabetes can walk an easier path toward the future.

How is your online life different from your offline life with diabetes? Do you engage more either way? Do you like engaging more online or offline? Do you seize opportunities, online or offline, when they arise? What makes you say yes or no to these opportunities?
 
 
 

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Offline encounters…

July 13, 2015 – 12:20 pm

I’ve gotta be honest… I almost never come across someone living with diabetes in my daily life. Well, maybe I should quantify that: There are 30 million people in the USA living with diabetes, so there’s a pretty good chance I cross paths with one or more of those people every day.

But I don’t see the outward signs of diabetes, like someone testing in public. I never encounter anyone with an insulin pump unless it’s at a diabetes conference or get-together. Not even at my endocrinologist’s office.

That’s why I feel weird when I read about someone’s talk with another pump user, or hear about someone’s impromptu experience helping someone they don’t know through a low. That kind of thing just simply does not happen in my life.

I used to think I wasn’t looking hard enough. That these moments, these people, were out there waiting to be discovered, and I was somehow missing them in my singular focus to go from point A to point B.

But… no. That’s not the case. Even when I thought I found someone using a pump, it turned out to be an iPod or something similar. From time to time, I’ve come across used lancets or test strips that someone’s discarded, but it’s been a couple of years since I can even remember seeing something like that.

Of course, there could be any number of reasons for this. I’m not even going to go into them here. It just seems like a waste of space.

Thinking about this makes me remember that I’ve wanted to start a local in-person meetup for some time. No, it hasn’t happened. I don’t know if it will happen this year even, but I’m thinking I really need something. Because my sense of connection to my fellow People With Diabetes seems to feel less connected at times, then punctuated with high notes when conferences or other in-person opportunities present themselves. That’s enough to keep me going, but I feel as though I’m missing out on the obvious benefits that result when pancreatically-challenged people meet and share one-on-one. How do I get more of this in my life? Or, flip side… would more of this make it feel less special?

I don’t know, and I don’t have any answers right now. Also, my life is far from empty. I am meeting new people, working on new things, engaging with PWDs in ways that do not involve speaking face to face. That’s not all bad. In fact, it’s been great.

I just don’t think I have a balance yet. Yeah, maybe balance is what I need to seek. Anyway, that’s how I’m feeling about my offline diabetes life right now. Next post: I’ll talk a little about my online life.

Do you seek out real life opportunities to share with People With Diabetes? Do they just happen? What has been a common thread in how you feel about these encounters?
 
 
 

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#WeAreNotWaiting: Meet the iLet.

July 10, 2015 – 9:36 am

Some news (read: a lot of tweets and Facebook posts) came across my desk yesterday due to the announcement of the iLet, announced yesterday at the Friends for Life conference in Orlando.

Dr. Ed Damiano and the team in Boston (including Scott Scolnick, whom I met at the Diabetes UnConference) have been working on a bionic pancreas system for some time now. That development took a remarkably different turn with the push to develop a bi-hormonal system beginning, if I remember correctly, about two years ago. Since then, things have moved along quite a bit.

First is the unique nature of this technology, which will essentially have two pumps in one: One for insulin, one for glucagon. Seeing the announcement yesterday tells me that the team is confident enough in the liquid glucagon solution they’ll be using to make this a reality. So, while I obviously can’t predict it, don’t be surprised if some sort of liquid glucagon makes it to the market around the same time the bionic pancreas does. But I digress.

The other thing that’s new with the iLet is that it will have its own dedicated device to manage everything. We’ve known for some time that the finished device would not have the iPhone with it as a controller (remember?). Yesterday’s news confirms that. The device will include a 4.3 inch touch screen, with which the user will manage settings and boluses.

So… there’s an actual dual hormone pump… there’s a dedicated hand-held controller… and algorithms that will help the system pump insulin or glucagon in appropriate amounts every five minutes. Those algorithms have been and are being tested to make them as responsive as possible.

Now you may be asking: Where is it? When can I get my hands on this groundbreaking technology?

The good news is that Dr. Damiano and the team believe their devices will be approved by the U.S. Food and Drug Administration and be ready for the public by 2017, which is the time frame they’ve been shooting for for a while now.

There’s a lot to learn, and I certainly don’t know everything yet. Take a look at the pump and controller HERE (controller, in this case, may not be the optimal term, but I can’t think of another word yet). Exciting things are happening, and I realize I’m taking a lot of creative liberty to say it, but:

#WeAreNotWaiting
 
 
 

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Advocacy in the 21st Century.

July 6, 2015 – 9:36 am

Tuesday and Wednesday this week, over 100 people will attend the second MasterLab, presented by Diabetes Advocates and Diabetes Hands Foundation.
Get the agenda HERE.

They will hear from a number of advocates who have accomplished much, inspiring others and moving our cause forward in a variety of very big ways.

But what about the rest of us?

When I speak to People With Diabetes about diabetes advocacy, they almost universally say “I don’t see myself as an advocate”. They explain this by saying that they’ll never be able to do what so-and-so does, and while they do some things, they don’t really consider those things advocacy.

When people say this, I think they’re wrong.

In many ways, that’s the problem with how we view advocacy in our world: We tend to measure any advocacy we perform against the biggest feats of advocacy we’ve ever witnessed. If it doesn’t measure up to that, it’s not advocacy to us. To me, diabetes advocacy has a much broader definition. If it doesn’t, then I think I may need to get out of the advocacy business altogether.
 
 
Let me ask you:

Do you participate in the Diabetes Online Community? Have you learned anything from what you’ve seen, heard, or read?

Do you go to events where speakers talk about new drugs, new research, new technology? Have you ever read a book and learned something you didn’t know before?

Have you ever helped someone in your life understand better what it’s like to live with diabetes every day?

Have you ever written your elected officials to ask for better care, CGMs for persons on Medicare, or funding for diabetes research?

Have you met in person with another Person With Diabetes and just listened to them tell their story?

Have you shared your story, your successes and failures, with even one person? Even a family member or a significant other?

Have you ever offered a helping hand to someone in need of extra supplies, a replacement bottle of insulin, a spare CGM transmitter, or a shoulder to cry on?

Have you responded, truthfully and honestly, to someone who posted something about diabetes, whether it inspired you or pissed you off?

Have you just lived your life with diabetes the best way you know how?

To me, all of those things are advocacy.
 
 
You know, not all of us can raise thousands of dollars for research all at once. Not all of us can donate that kind of money all at once either. When someone tries to shame or stigmatize us, we can’t always get there first with the most anger. Not all of us can go on television or radio, or even a podcast, and bring our message to the masses.

But we are not helpless, and we are not alone, and we are not insignificant.

What we can do is learn. What we can do is share what we’ve learned. What we can do is support others doing the same, in large and small ways.

Because when we do even the smallest thing to advance our cause, we are advancing our cause. My guess is that you are making a difference.

My plea is that you continue to do so.

Care to share your story of advocacy? Leave me a comment below!
 
 
 

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