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.

Lists and Agendas and Diabetes.

April 17, 2018 – 10:11 am

This is the list of tasks I wanted to accomplish last weekend. I know, taxes. I’m not usually a last-minute filer, but after getting them nearly completed a week ago, I needed to get some additional information together before I could send them out.

The good thing about lists is that you can keep track of everything you want to do, or that you want to pick up at the grocery store. Plus, if you’re me, lists are valuable for not forgetting things. I am an unabashed list maker.

That’s where diabetes is different. You can’t make a list for diabetes.

You can make a list of prescriptions or supplies you need to refill. You can list the doctors you need to see this month. But when it comes to the everyday highs, lows, and in betweens of living with this thing on a never ending basis, there is simply no way to plan it out.

I’ve seen the internet memes where people draw schematics to map out their decision processes when their BG is high or low. For many, doing a design like this is cathartic, and for people who don’t live with diabetes, it’s even enlightening.

Speaking only for myself though, it’s neither. That’s not to say I think it’s useless. It’s a great tool. But it’s already been done, and I don’t think I could add much more to it, though it might be fun to try someday.

Also, I remember that there are no schematics, no lists, that can’t get blown away at a moment’s notice, just because diabetes wants to screw with you that day. So while it’s funny to imagine all the twists and turns of our decision-making that happens, the truth is, we often don’t know what’s going to happen during the course of a day with diabetes.

Remember when we read about the costs of diabetes beyond doctor visits and prescriptions? This is part of what they’re talking about. It’s where lives are changed and appointments are missed and meals are adjusted and where we all pay, all of us, everyone living with and not living with diabetes… it’s where all of us pay the cost of a condition that doesn’t care about lists and agendas.

I accomplished everything on my weekend list. That’s the product of a plan, a focused effort, and a diabetes that actually cooperated for once. What galls me is that I have to rely on more than a plan and focused effort to get the job done.

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Not exactly Spielberg, but A.I. has arrived.

April 13, 2018 – 10:11 am

It is kinda cool, at least for starters.

Wednesday, the U.S. Food and Drug Administration (FDA) approved marketing of a device designed to use artificial intelligence to detect retinopathy in people living with diabetes.

There are several things to cover here. First of all, the FDA announcement is that it “permits marketing” of the device. In other words, it can be sold to practices as an artificial intelligence diagnostic tool. There was a fair amount of testing and back-and-forth in the development and rollout of this device, and I’ll get to that in a minute.

Simply put, this is a way for non-eye doctors to use a tool (actually, two tools) to take a photo, upload the photo, and get a retinopathy or not retinopathy diagnosis. It’s not designed to avoid the more detailed examination an ophthalmologist can perform. But it’s a way to perhaps get an early diagnosis of a potential issue with your eyes.

The tools used by the doctor (presumably, a primary care physician, or GP) are 1) The Topcon NW400 retinal camera. The doctor will take a photo with the retinal camera, then upload it to the cloud, where it will be analyzed by 2) The newly-marketing-permitted IDx-DR software to determine one of two outcomes (from the FDA press release… see link below):
(1) “more than mild diabetic retinopathy detected: refer to an eye care professional” or
(2) “negative for more than mild diabetic retinopathy; rescreen in 12 months.”

So, where’s the “artificial intelligence” angle here? I’m glad you asked.

This is the first device (the software is considered a device in FDA parlance) allowed to be marketed to provide a decision without getting a clinician involved in interpreting the results. In other words, the software, not a human, tells you whether there’s an issue or not.

How did the FDA arrive at the level of confidence needed to arrive at this decision? There were 900 diabetes patients in the clinical study, in ten different locations. The study revealed that the software made the right decision on “more than mild diabetic retinopathy” 87.4 percent of the time, and “not more than mild diabetic retinopathy” 89.5 percent of the time. That may not seem like a lot, but to this observer, that sounds pretty good for first generation software.

One of the other things I’m encouraged by is the way this rollout was handled through FDA’s De Novo premarket review pathway, designed to help new devices that are seen as being low to moderate risk get marketing approval. Through this, FDA granted the software Breakthrough Device designation, which provided a framework for greater interaction between developers and the FDA on guidance, testing, and documentation, so the developers could work more efficiently on FDA’s concerns, and the FDA could more effectively work on review.

Hey, look… I don’t know if this software and the retinal camera needed to make it work are going anywhere. But I think this story is important to pay attention to for the way it was handled by the developers and the FDA, particularly FDA’s Center for Devices and Radiological Health; and the fact that this is software that removes the human element from at least the initial diagnosis process.

How you feel about such a development is your choice.

Read the full FDA press release HERE.

Find out about the De Novo premarket submission process HERE.

Find out about the Expedited Access Pathway Program for Breakthrough Devices HERE.

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How do you talk with loved ones about diabetes?

April 11, 2018 – 10:11 am

Relationships. We’ve all got ’em, of one kind or another. Parent-child, siblings, significant others, Friends, Romans, Countrymen. And when it comes to diabetes, communicating with the ones closest to us is not as straightforward as it may seem on the surface.

Let me ask you: Have you ever held something back from a loved one, or if your loved one lives with diabetes, have they ever held something back from you? Maybe what was conveyed was not the truth, the whole truth, and nothing but the truth. Maybe a detail was left out here or there.

Hey, you’re not alone. I’ve done it too, for differing reasons. I’ve left out details of a really bad low I had when I was traveling by myself. If my blood sugar was 65 mg/dL before lunch, maybe I said it was 95 mg/dL, even though the 95 was actually an hour and a half ago.

You might not know this, but that’s really hard for me to do. I tend to overshare, especially about my diabetes. The fact that I’ve not shared everything is a sign that I’ve taught myself to when to share and when not to share with the one person I should be willing to share anything with.

Excuse me while I pause for a moment of guilty reflection…

I worry sometimes that this means I’ve given up on getting The Great Spousal Unit to understand certain aspects of my diabetes. I’m sure there’s also an element of “I don’t want to worry her too much”, but let’s focus on the understanding right now because I want to ask:

How do you do it?

How do you decide what is worth sharing, what should be kept to yourself, what is important for your loved ones to know and not to know?

Do you ever get burned out talking about another high or low, another bad pump site, another failed CGM sensor?

What’s the dividing line between Tell and Don’t Tell?

Sure, if it’s important for Maureen to know so she can act on my behalf when I can’t speak for myself, I have to tell her. If it’s something that happened and she’s no worse off for not knowing about it, it’s probably okay to keep it to myself.

But there’s a lot of gray area in between there. And I’ve been doing a lot of personal examination lately to try and determine if I need to revamp my communication strategy with those closest to me.

It’s easy to get complacent when it comes to sharing, what we share, and how we share it. It’s easy to believe we’re sharing exactly the right amount at the right time, with the right person. But every once in a while, it’s okay to do some self-examination and reconsider how we’re talking to the people who mean the most to us.

We’re going to be covering this very topic tonight at 9:00 ET(US) during the weekly DSMA Twitter Chat. If you’d like to talk about it, follow the @DiabetesSocMed Twitter account and look for and use the #DSMA hashtag.

Join us, and let’s get a handle on this communication thing.

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Another Blogabirthday.

April 9, 2018 – 10:11 am

Today, Happy Medium turns 6. Today, I turn 56 years old. And yes, even though I’m not close to retirement, I’m at least doing the math.

Another Blogabirthday is here.

The 788 blog posts I’ve shared, including this one, have meant so much. This website has given me an extended chance to speak about subjects that have been very important to me.

Okay, there have been recipes and vacation recollections I’ve shared too, but I keep coming back to the main purpose of this blog: To connect, to share my thoughts, to serve as a platform for learning and sharing what I’ve learned. Also, to serve as a personal journal of sorts, so people reading this after I’m gone can see what it was like living with diabetes in the mid 20-teens.

It can’t all be seriousness and clinical thinking though. If that’s what this was about, I think I would have lost my inspiration for it a long time ago. While posts have been a little less frequent in the past year, they’ve still been regular, and that brings me to this thought:

I really, really like writing here. If you write a blog too, you might have a sense of this, but if you don’t, I don’t know if there’s a way to describe how blissful I feel every time I sit down to write something. It never seems like a chore.

This is one of the only places in my life (maybe the only place in my life) where no one can tell me what to say or how to say it. Every time I think about that, I almost get chills thinking of how absolutely free that makes me feel.

There are still many of us writing out our thoughts, educating others, and chronicling our lives online. I’m not unique. I think if you were to ask all of us for a memorable moment from blogging or other social media activism, my guess is we’d all recall something that had a direct impact on the life of one individual.

Readership at Happy Medium has gone up and down and up again over the years. I don’t pay too much attention to the stats. What I pay attention to is when I can express something that makes someone feel better, either physically or emotionally. That makes me want to come back to the keyboard and do the same for someone else, because no one should have to feel like they’re alone living with diabetes.

It’s as true as when I wrote this almost five years ago:

“If you’re only reaching one person, that one person is the most important person in the world… Your story is the most important one in the world to the person moved by it. Don’t let down the one person who needs to hear you.”

Whether you make that connection online or off, this is what makes the Diabetes Community special. Share your story. Use your freedom. Never take it for granted.

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The Facebook Group phenomenon.

April 5, 2018 – 10:11 am

I’ve been added to about seven different Facebook groups lately (no, wait– it’s actually eight). All are diabetes or health care advocacy related. Is it me, or is this becoming a thing?

Sometimes, it’s because I’m attending or have attended a conference, and the organizers created a FB group for it. Others have been due to something common that the group’s creator wants to share and have shared within their group.

When I’m added to a group, I get a little imposter syndrome, like I do with nearly everything else. Why do they want me in their group? But I get over it kinda quickly. Then I’m left with: do I participate, lurk, or ignore it altogether?

I’m a Facebook user and have been for years, but I think it’s safe to say that I consume a lot more content than I produce. So already, I’m mostly on the lurking side.

Not that I’m shy online. But I’m careful about my online (and offline) reputation, and that makes me careful about saturating the internet with things that I might be embarrassed about sharing in years to come. So I err on the side of caution.

Plus, I look at FB groups with the same lens as I look at individual FB users… all of them are different. They have different focuses, and they appeal to different constituencies. Nothing wrong with that. I see that as something that makes the overall Facebook community better.

But when I consider posting to a FB group, I take into account the things that make that group unique. And with so many different groups covering so many different topics, I feel like posting to each one would mean I’d have to turn on a different personality each time I post to another group’s feed. That’s a lot of work for something that’s supposed to be fun. I just want to be me… be authentic.

I also have to manage my settings, every time I’m added to a group. Do I want notifications? Which notifications? Do I want to add the group as a favorite? Do I want to leave the group entirely? That’s extra work too.

I like being a part of these groups. I want to hear what people have to say about a topic. Sometimes I learn something new. It’s always worth hearing another perspective on something that I have in common with the users in these groups. Once in a while, I have something important to say too.

However, I have a high regard for people, individual people that I can have a one-on-one connection with. And when half of my personal FB feed contains posts from users, and half are from groups, I don’t think it’s hyperbole to say that the Facebook Group phenomenon has reached its zenith (a zenith is a peak– really, I just wanted to use the words hyperbole and zenith in the same sentence). Or I need some new Facebook friends. Recommendations are welcome.

Nevertheless, keep creating those Facebook groups, people. It may not seem like I’m there all the time, but I’ll be reading. Good luck.

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