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.

What are your dreams for the future?

Earlier this week, I talked about how far closed loop technology has come in the past ten years or so. Today, I want to ask you: What’s next?

In other words, what do you think is next in diabetes care? What are you wishing was next? What do you want your world with diabetes to look like in five or ten years?

Maybe you just care about a cure and nothing else. That’s fair. Perhaps you’re interested in trying a patch pump, whenever it’s available in your country. Or maybe you want to learn more about that implantable CGM you’ve been seeing headlines about.

Would you like to see improvements in software to help you keep track of your diabetes hour by hour, day-to-day, week-to-week? Is there a nifty device you’d like to see developed?

My interests these days not only focus on diabetes, but on health care in general. I’m interested in what people living with conditions other than diabetes experience, and if there are any parallels to diabetes. I want to hear about their interactions with health care professionals, and whether there’s anything I can learn about that.

Of course, I’m interested in how we can improve access for new and existing patients, to help them get the best of what is already available. I will keep fighting for that as much as I can. Same goes for families and loved ones of those living with diabetes.

As far as everyday diabetes goes, two things:

First, I can’t wait until there’s a glucagon solution that doesn’t require a bunch of steps to go from unpackaging to injection. That’s exactly why there isn’t any glucagon in my house. The time has more than come for this. Here’s hoping it gets to approval and into our hands in the very near future.

Second, I think I’d like to see some improvements in insulin pump infusion sets. There really haven’t been changes in infusion sets in the almost ten years I’ve been pumping, and I think there’s an opportunity there for someone to make a difference. Ultimately, I’d like to see a less invasive (read: less scarring) set that could also last a little longer than today’s infusion sets do. I realize that’s a stretch… I’m just wondering if it’s possible, and if it is possible, how to get it from idea to approval.

I realize those are two non-pie-in-the-sky things, but I’d be happy if they happened anyway. And really, any improvement in diabetes drugs, technology, devices, therapy, and access are huge wins for our already too large community.

Now, let me bring it back to you again. What are your dreams, wants, needs, and desires for the future?

Defining Moment

Every now and then, I look back and realize just how far we’ve come in less than ten years. I realize access is an issue, and it deserves its place and time. But for this moment in time, I’d like to focus on the sheer magnitude of advances we’ve witnessed over the last decade.

Part of the story of the birth of this blog comes from a radio interview heard by The Great Spousal Unit one day. She called me at work, very excited, and told me I needed to listen to it with her after work that night.

The interview was about artificial pancreas technology. The year was 2011.

I’ve told this story several times, so if you’ve heard it, feel free to skip down a little farther. If not, here’s a little background:

I had been wearing an insulin pump for about a year by this point, and my diabetes management was okay, though I really had troubles with highs and lows. The averages were good, the peaks and valleys were not.

After we listened to the interview, the conversation went something like this:

Maureen: ”Isn’t that exciting??? I mean, isn’t that really groundbreaking?”

Me: ”Yeah, well, if they could get it to work, it would be exciting. There’s a long way between here and there.”

Maureen: ”I can’t believe you’re not excited about this. You love this stuff!”

Me: ”Okay, it’s interesting. If it works. What do you want me to do about it?”

Maureen: ”Find out about it! Someone has to be writing about it… find a blog!”

The next morning, I googled “Diabetes Blogs” and found the Diabetes Online Community.

Since then, I’ve seen countless talks and presentations and read position statements and FDA guidance on the subject. I’ve seen a lot of the work that was done at the University of Virginia on the subject.

I attended early Children With Diabetes Focus on Technology events where prototypes of the Bionic Pancreas (as it was known then) were displayed and talked about. I’ve been to FDA public workshops where evidence was presented that shows time in range for blood glucose is better than the simple A1c, and backed up with clinical data on closed loop systems.

I’ve seen the likes of Dana Lewis and Tidepool’s Howard Look speak about DIY closed loop systems, part of the #WeAreNotWaiting movement that has really helped accelerate the pace of development.

I’ve watched as now, finally, every insulin pump manufacturer in America has undertaken ongoing work to bring the best of this game-changing technology to people living with diabetes.

Through it all, I’m amazed at the dedication of the hundreds of individuals who have kept this dream alive through research, and through participation in clinical trials, pushing forward, clearing hurdle after hurdle. #WeAreNotWaiting? How about #WeAreNotGivingUp?

Recently, I’ve also thought about how much of an honor it has been, and what good fortune it has been, for me to witness this time. Access issues aside, we are all so lucky to be around during this defining moment in diabetes history.

There are so many interviews I’ve done, so many questions asked, of those working on this. But I wonder if the best interviews, the best questions, the best answers, might come a few years down the line, after closed loop insulin delivery becomes de rigueur. What stories these pioneers can tell!

In the meantime, I’ll be watching and waiting, and cheering the men and women who are changing what diabetes management looks like for this generation and beyond.

Guarding against the next time, preparing for it anyway.

I had a crazy low recently. They don’t happen very often anymore, but on the rare occasions when they do, they’re scary.

It’s hard to describe it to someone who’s never experienced this before. It’s one of those situations where you’re cognizant enough to know what’s happening, but you have to fight like hell to actually perform the task you need to perform to maintain consciousness.

The reason why it happened? Doesn’t matter. Sometimes it’s a more-than-perfectly working infusion site. Sometimes it’s human error. Sometimes it’s unexpected things popping up at the wrong time, a perfect storm.

It doesn’t matter. Not every day will be perfect. Let me repeat that again: Not every day will be perfect.

I tell people who know nothing or next to nothing about diabetes that hypoglycemia, especially this kind of low, is a near death experience. Especially when you’re alone in the house, having difficulty maintaining your balance, using every ounce of energy to get the will to get fast-acting carbs into your system, then hoping they’ll work faster than ever before.

It’s every bit as scary as that sounds.

Technology and Bluetooth options and careful management can only take us so far. As long as there’s insulin and an imperfect way to measure and dose, all of us living with this condition will be on vigilant alert, cautiously guarding against the next time.

And preparing for the possibility that it might happen anyway.

Do the extra steps in your day really matter?

Holey Moley, the health care world is full of stories that contradict each other. Everyone will tell you it’s science, but very few can tell you if it’s actually definitive.

For years I’ve ben reading stories and hearing advertisements about how taking 10,000 or more steps a day will help us lose weight, get our hearts (and the rest of us) in good shape, and generally turn our frowns upside down. But now, I’m starting to see the counter-argument taking place… that the science of how many steps we take each day is complicated, and that movement may be less important than metabolism.

So the question remains: Do the extra steps in our days really matter?
 
 
Does getting out under the sun at least once in your day matter?

Do the simple things, like seeing the geese on the waterfront, help you feel better?

What about the steps needed to be with an important friend who means the world to you… do those steps matter?

Taking steps to be with someone close to you so you can spend time laughing and experiencing the world together… that’s priceless.

The steps you take on the way to seeking the help you need when you’re feeling down… do those matter to you?

Those steps I take walking with our dog each day… let me tell you, those matter.

If you have kids, I’ll bet every step taken to be with them matters more than I can describe here.

Without question, the steps we take to positively influence another life are golden.
 
 
I submit that health can be defined in many ways. And therefore, benefits to our health can be defined in many ways.

The steps themselves don’t matter. What we give and what we receive as a result of the steps we take is what really makes a difference.

Another June… Another 5k

I’m all about meeting goals, especially if they’re my own. And this past weekend, I was able to meet one of my yearly goals in a unique and fun way.

If you check out my blogroll on this page, you’ll see a link to Phyllisa’s blog, Diagnosed Not Defeated. On Saturday, Phyllisa celebrated her 40th birthday.

As part of her celebration, she arranged the Fit & Fabulous Virtual 5k… a chance for 40 people all over the world to complete their own 5k (5,000 kilometers) wherever they were.

For the last several years, I’ve usually participated in my local 5K, held about five minutes from where I live. This year, the local 5k is on Father’s Day, and I’ll be out of town. So when Phyllisa announced her virtual 5k to be held a week earlier, I jumped at the chance.

This gave me an opportunity to meet a goal I’ve had for a while now: to complete a 5k every year through age 60. I’m 57 now, and completing this event means I’m still on track to meet that goal, with only three more years to go.

Here’s a photo with me wearing the stylish race bib. And also a couple of short videos… one from just before the run, and one from about 15 minutes after.

As I mention in the last video, it was probably the slowest 5k I’ve run in my entire life. But it was still great fun.

Thanks to Phyllisa for organizing this event. You should definitely read her blog too. This was a terrific happening, and a nice way to get my weekend started. Fit & Fabulous 5k… Done!

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