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.

Define Diabetes Advocacy. There’s more than meets the eye.

January 26, 2014 – 3:00 pm

After some careful consideration, I feel compelled to weigh in on the idea of advocacy. You may believe that I have no business inserting myself into this conversation, and maybe for you, that’s true. If that’s the case, feel free to move on to another blog. If not, read on.

I don’t usually post something on Sunday. I hadn’t planned to post anything today. Then when I opened up Saturday’s New York Times, I saw a photo that, to me, is a perfect example of what advocacy looks like. For copyright reasons, I can’t show you the photo here. But before you continue, please click over to this New York Times story to see what I’m talking about:
http://www.nytimes.com/2014/01/25/world/europe/ukraine-protests.html?_r=0

Four Orthodox priests. Standing, praying, between protesters and police. It really says a lot to me about what advocacy looks like.

There they were, standing between the two sides. You’ll notice they were standing with their backs to riot police, facing the protesters. Did they turn later and face the riot police too? We don’t know. Did they support one side more than another? We don’t know. I like to think their concern was for everyone involved in the conflict Friday night in Kiev.

But whatever their political leanings (if any), the fact was they were advocating for better outcomes.

Do you think they knew the impact of what they were doing? Do you think they knew exactly how to do what they were doing before they did it? Do you think they knew what the outcome would eventually be?

The truth is, violence returned sometime after that photo was taken, and rubber bullets were fired at protesters, who threw rocks at police and firebombed buildings.

But how many people walked away from the conflict after seeing the advocacy of these four individuals? How many people, on both sides, who saw their display of peace and hope will tell their children about it and encourage them to find better solutions to their problems in the future? That’s an impact that could be decades away from happening. Yet the seeds were planted Friday night. The exponential benefits of their advocacy may not be fully realized for generations. Yet they felt that now was the proper time to make a statement, take a stand.

Do you think these four Orthodox priests were afraid? Of course they were afraid. But they also understood that far more lives are at risk due to inaction. And far more lives are changed for the better due to action.

There were four of them there in the square in Kiev. There wasn’t one priest in four separate locations. Sometimes numbers make a difference, and sometimes it’s okay, even good, to latch ourselves onto someone else’s idea and help their advocacy succeed. Because by helping them succeed, we all succeed. Try it sometime. You’ll find out I’m right about that.

Do you think they were concerned that they weren’t important enough to take on such a task? I think they were only concerned about the task. They probably didn’t know exactly how they were going to do what they did, but they pushed ahead anyway. They didn’t have it all figured out. But they knew what they could do, and they did it.

Very few people begin advocacy efforts, or join existing advocacy initiatives, knowing everything about what they will do or how it will impact others. Or even if their efforts will result in anything measurable.

But they know there is a need. They have the empathy to identify with it, and the resilience to do what they can, even if they don’t know everything about where their inspiration will take them, or even if it will succeed. But even the smallest gesture, in places seemingly unknown, can have a lasting, profound impact on all of us.

With that, I will leave you with this musical interlude from Sara Bareilles. And this admonition: Show me how big your Brave is.


 
 
 

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What else do you want?

January 24, 2014 – 9:43 am

So GoogleX has announced their intent to develop, and find a manufacturing partner for, a glucose-sensing contact lens. Okay, great. Let’s hope their research comes up with something new and fantastic for People With Diabetes.

However, it’s not usually one device, but an entire system that matters, that helps us. In fact, I’d like it if GoogleX’s research results included several other ideas. You (and by You, I mean anyone developing new medical technology) can apply many of these notions to anything you might develop in the future. I’m including some other ideas here just because, you know, it’s my blog, and it’s Friday. Do you have ideas of your own? Feel free to get your own blog, or leave a comment below.

1. Accuracy, accuracy, accuracy. The data I’m getting from your device needs to accurately report what’s happening with my BGs, or it’s a non-starter with me. Period.

2. Can you make this technology work with the rest of my robot parts? Like, can it talk to my pump please? Regardless of the pump manufacturer? This also requires you to get on board, Asante, Medtronic, Tandem, Animas, et al. And FDA. Silos: Bad. Collaboration: Good. I believe the word we’re referencing here is “Interoperability”. See also “Open Platform”.

3. Ooh… Can we also have it upload data directly to our healthcare professionals? And can we force our healthcare professionals to actually read it and use it to help us get to meaningful outcomes? I’m not above using Pavlovian methods in pursuit of this goal. In fact, just thinking about this has me salivating like a dog.

4. Any chance you could get it to determine actual carb counts in literally everything? This is something else that would need to work in concert with another device. Look at a plate of food, blink your eye (or maybe wiggle your nose– whatever works), and have the carb count immediately display on your smart phone or Google Glass. You know, something like that might actually get me to invest in a smart phone.

5. While we’re at it, can you get any accompanying software associated with your product to work over multiple operating systems, including Windows, Apple, and all the rest? No excuses about how “we just wanted to get it to work on one system, and we’ll be working on the others soon”. Conformity: Bad. Diversity: Good.

6. While we’re still at it, can you make it affordable? Always? I mean, if you can help someone use their phone so they can see House of Cards or an adorable dog food commercial via their television set, and do it for 35 dollars, you should allow me to have access to my personal data without it costing me a fortune.

7. Can you get my insurance plan to cover it? This would eliminate the need for #6. Extra points for you if you can pull this off. Extra extra points if you can make it available to everyone who wants it. If we’re living with diabetes, we’re all equal, even if our insurance plans are not. No use getting excited over a new device if I can’t afford to get my hands on it. And I don’t need the guilt that comes with having access to something that someone else does not.

8. Can you use David Bowie’s Space Oddity in your marketing efforts for this product? No real reason, except I think it’s kind of a cool song with a great sound that lends itself to something futuristic. Even if it is nearly 45 years old. Side note: Maybe this isn’t the best choice here. Listening to it again, I realize it always reminds me of going low. That funky/weird guitar thing in the background is what’s playing in my mind during hypoglycemia. So, ummmm…. Never mind.

Those are my eight seven ideas. Feel free to add to the list by leaving the results of your brainstorming below. And please remember it’s Friday, so feel free to have fun with it too.
 
 
 

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Recipe! Alternative salad.

January 22, 2014 – 9:22 am

We had sliders for dinner the other night. Or, in my case, slider. One is enough for me to feel full anymore, even though the taste is quite satisfying. It’s the carbohydrates in the bun that turn me off. Once in a while, I’ll have a second, without the bun.

Anyway, this isn’t about the sliders. It’s about the salad I made as a go-with for this meal. If you’re looking to make semi-lifestyle changes in the new year, a salad is a great way to replace something like french fries with something that’s more healthy, yet still filling.

My recipe is for a salad that’s a little different. Lettuce is not the main ingredient. I remember seeing Jamie Oliver doing something like this on TV a while back, but I’ve lost track of where and when. It’s a great change of pace when you’re sick of chopping up the lettuce and throwing something familiar on top. It’s actually a really great summer salad, but it works this time of year if you can find ingredients that you like.

I started with a large plate. It helps me to do this on a large plate first, but you can do it in a bowl too. Just give yourself enough space to work with without damaging the delicateness of all of the ingredients.

The recipe begins with a large carrot and a large stalk of celery. Then I got out my peeler. For a recipe like this, it helps to have a sharp peeler. But if you don’t have a sharp one, a little elbow grease will help you get the job done. Just give it a little effort.

I peeled the carrot and celery, then got out a couple of green onions (also known as scallions). I chopped the scallions in half, then sliced each half very thinly lengthwise. Once that was complete, I thinly sliced a medium-sized radish. I also added a little chopped-up red cabbage. Then I chopped some fresh cilantro to help add another layer of flavor. Oh, and I added some tomato too (campari tomatoes, quartered, if you want to know). I love tomatoes, and I almost never go without them on my salad.

DSC01312

I made a lemon vinagrette to mix in with all of this. The lemon helped to mellow the strong flavors of the radish and cilantro. I’m not including the lemon vinagrette recipe… it’s basically red wine vinegar, some olive oil, and the juice from half a lemon. Add in salt and pepper to taste, if you like. So there. I did give you the recipe.

Okay… where was I? I added the lemon vinagrette, made sure my hands were clean, and gently tossed everything together. Sometimes you just have to get your hands messy. I used a large leaf from a head of romaine lettuce as a bed for the salad, and placed everything on top. What do you think?

DSC01315

Total estimated carb count: I have no idea, really. I know there’s a little bit in the carrot, a little in the tomato, and a little in the lemon vinagrette. I’m gonna guess it’s 8g per serving, but that’s just a shot in the dark.

Making this salad was a fun experience, it was easy, it was quick. Next time you’re staring in the fridge dreading another salad, or if you’re looking for a super alternative to something more carby, this may be your answer.

Carb counts are estimates only. Check with a registered dietician to find out what a healthy carb count is for you.
 
 
 

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The future is not yet written.

January 19, 2014 – 11:26 pm

Sooooo, how did that visit with my endocrinologist go last Thursday?

For the first time in a long time, I was seriously worried about a visit with my endo. Simply put, I have not been a good citizen. As far as I could tell, my BGs were running higher than usual in the past three months. On top of that, my eating habits weren’t so fantastic either. I was sure that the results of my tests were going to be awful, and I was going to have to make some serious changes to get back to where I’ve been for the last five years.

I was very concerned about letting down my endocrinologist, who’s been instrumental in helping me focus on the right things, helping me keep my numbers in a good place on a consistent basis.

So… So… How did it go?

Surprisingly well.

My A1c stayed exactly where it was last time. I did manage to gain two pounds over the holidays, but I thought the scale was going to show I had gained much more. I’ve got some work to do, but overall, it could have been much worse.

I’ve spent a lot of time thinking about it over the weekend, and I think there may have been one thing that helped me.

I did a lot of glucose checks every day. Probably more than ever before. Even when I knew the number might not be good, I tested anyway, so I could make corrections if necessary. And there were days when I made a lot of corrections. That may have made the difference. Diligence works.

Going forward, I have two things to remember. I need to work out more often, without a doubt. And I need to eat better. Which, thankfully, I’m already doing.

Hey… Listen, it’s true that this diabetes thing is really a marathon, and not a sprint. That said, I’m glad that last week’s visit turned out well, and I’m happier still that I have a chance to be even better going forward. The future is not yet written. And I’m encouraged by that.
 
 
 

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JDRF Type One Nation DC Research Summit.

January 17, 2014 – 9:19 am

This post falls under the heading All News is Local, or in this case Regional. If you live in the Mid-Atlantic, you may already know about the JDRF Type One Nation DC Research Summit happening in Bethesda, Maryland (outside of Washington, D.C.) on March 1st. If not, you can find out about it at jdrfsummit.org.

It promises to be a day filled with information gathering, making connections with other PWDs and parents of CWDs, and hopefully, a laugh or two. What’s on the agenda? That’s what this post is about. I wanted to take this opportunity to let you know about the lineup of presenters that day. There is a separate youth program that, unfortunately, I don’t know anything about. But here is the agenda for the adult track:

The day will begin with a welcome from Piper Dankworth Sutton, Executive Director of the recently-consolidated Greater Chesapeake and Potomac Chapter of JDRF. As a side note, I have to think her job is a tough one, considering her chapter includes what a year ago was two chapters, over a large geographic area encompassing over 8 million people. That probably means hundreds of thousands of people living with Type 1 Diabetes.

Our moderator for the day will be Mary Kate Cary, who’s a former White House speechwriter, and currently a contributing editor at U.S. News and World Report, as well as a political analyst on National Public Radio.

Bethany Salmon, Senior Manager of the Research Business Development Group of JDRF, will talk about JDRF Translational Development: Partnering for Success, highlighting (I think) collaborations between JDRF and various entities doing research on Type 1 Diabetes.

Roland Tisch is a Professor in the Department of Microbiology and Immunology at University of North Carolina. His topic of discussion is Reversing Diabetes. Hmmm… I might have picked a different topic, but okay. We are talking about research here.

After lunch (did I mention lunch is included?), EUGENE BRANDON, PhD and Director of Strategic Relations and Project Management at ViaCyte will talk about Developing an Encapsulated Cell Therapy for Diabetes. Last year’s discussion about encapsulation therapy was my first exposure to the subject, and I’m looking forward to Dr. Brandon’s talk about it this year, as well as hearing him talk about ViaCyte’s collaboration with JDRF in this field.

Later, the subject will be Approaches to the Cure: Nanoscience and Immunology, presented by Stephen Miller, PhD, who is (long, impressive-sounding title coming) Judy Gugenheim Research Professor, Director-Interdepartmental Immunobiology Center, Department of Microbiology-Immunology, Northwestern University Medical School. Still with me? This is another topic that doesn’t get enough attention, in my opinion, so I’m hoping Dr. Miller can provide a little more insight for us.

Finally, the presentation I’m really waiting for: Kelly Close, Editor-In-Chief at Diatribe, and her colleague Adam Brown, Co-Managing Editor at Diatribe, will present Diabetes Technology: A Bridge to a Cure. Kelly is a well-known diabetes advocate, of course, and she participated in a bionic pancreas clinical trial up in Boston last year. After not making the cut for two artificial pancreas trials in the past year, I’m eager to hear about her experience firsthand.

All through the day there will be exhibits and book signings and chances to connect with people who walk the same stretch of road that you do, so to speak. After all of the speakers are finished, there will be a question-and-answer session with the panelists.

Why am I making a big deal of this now? Well, to begin with, I was asked to write something about it, by someone I respect, so that’s what I’m doing (no, I’m not getting anything in return). Also, and I’ve said this before, if you’ve never been to an event where this kind of subject matter is discussed, or if you’ve never been to an event with other PWDs and parents of CWDs, this is the perfect venue to get your feet wet. Laid back, supportive, and friendly. And free to attend.

So again… If you want to know more, or if you want to register, go to jdrfsummit.org. And let me know if you’ll be there, so we can connect!
 
 
 

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