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.

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!

How Far We’ve Come

I’ve been reading a lot of Facebook and Twitter posts this week from people in our Diabetes Community heading to the American Diabetes Association Scientific Sessions in San Francisco. And it’s made me think about the efforts of those from the community, working within the community.

There are people living with diabetes who are working for software specialists, and device manufacturers. Others are writing for websites and publications. Some are speaking and presenting.

It warms my heart to think about this.

To be sure, diabetes advocates who came along way before me spent years trying to get their feet in the door to conferences and symposia. As they slowly made their way to venues near and far, they managed to show their worth in ways that helped make it easier for others to be where they were.

When industry started to realize the value of having those with intimate knowledge of diabetes among their ranks, they began to hire PWDs and Certified Diabetes Educators. Those people have helped companies develop products better suited for those who live with diabetes. They’ve collaborated on patient-centered messaging that helps their companies communicate with the people who keep them in business.

We have people with diabetes serving on FDA groups and state advisory councils and committees. We’ve even seen those living with diabetes starting their own non-profit and for-profit enterprises, and it’s wonderful.

It goes without saying that these people bring a wealth of knowledge to their daily duties. They also bring a passion that can only come from someone living with or affected by this disease.

I couldn’t tell you when it started, but I can tell you that it’s been great to watch.

So today, I’m thinking of these wonderful people, and hoping for their continued success. You’re all blazing trails with bright lights and sharp minds.

Thank you for your continued service. My biggest hope is that we eventually run out of the reason for what you do.

Like These Links

Welcome to Wednesday… when, for the first time in a long time, I’m handing out links like they’re candy at a hypoglycemia festival. Let’s get started:
 
 
First of all, in case you missed it, the 2019 DiabetesMine Patient Voices Scholarship Contest is underway. That means you have a chance to go to San Francisco for a few days and participate in two of the most incredible events on the diabetes calendar all year: The DiabetesMine Innovation Summit and the D-Data Exchange event. I’ve always wanted to go to this, but may not apply due to other commitments.

However, I want to encourage you to apply for a scholarship! Why not you? Get all of the details and the link to apply:
OPEN FOR APPLICATIONS: The 2019 DiabetesMine Patient Voices Scholarship Contest!
 
 
In addition, if you think that medical devices like insulin pumps and CGMs are like, reeeaallly cool, you might want to check this out from the U.S. Food and Drug Administration. This page definitively explains the FDA’s proposed changes to its digital health software (is there any other kind?) precertification program.

One of the biggest proposed changes is to allow device manufacturers with a track record of quality and a willingness to monitor their devices post-approval a streamlined pathway toward approval. In my mind, that’s big, in that manufacturers would be monitoring devices post-approval, the way drugs approved by the FDA are.

It’s an interesting and informative read:
Digital Health Software Precertification (Pre-Cert) Program
 
 
If you know me, you know I’m a foodie, and I really like the Hangry Woman blog. Recently, Mila, the author, published a terrific post featuring five breakfast recipes. I should admit right now that I hate fried or hard boiled (or soft boiled) eggs, but I’m pretty sure I could make updates to most of these and have them come out fine. See what you think about these:
5 Filling Diabetes Breakfast Recipes

(I checked, and as far as I can tell, none of the recipes actually has diabetes)
 
 
Finally, from Renza at Diabetogenic, a few words about community, what it means, and how we all fit into our community, however we define that word. If you read none of the other posts above, read this one. It will make your day:
Community Connections
 
 
While I’m at it, thank you for clicking on links to come here and find out what I’m thinking. It means the world to me, and I’m thrilled that you have become part of my community.

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