Author Archives: StephenS

Hi, I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 diabetes since 1991. Living with my Medtronic pump since 2010.

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.

The Dexcom G5 Mobile App. I’m a fan.

After last week’s whiny post about how I’ve been so disappointed in my diabetes devices lately, I feel compelled to let the pendulum swing in the other direction and give credit where credit is due.

About a week and a half ago, Dexcom rolled out its G5 Mobile app to Android users. Finally. Okay, I said I would give credit where credit is due. And kudos to Dexcom, who, as far as I can tell, is the only device maker to develop software to use on an Android platform. Yay!

I know all of you iPhone Dexcom users are yawning right now, but please give me a moment to be happy too. I’m a person who can appreciate the wonders of a good smart phone, but I can’t bring myself to pay hundreds of extra dollars because there’s an image of an apple on it. After years (literally, years) of waiting for an Android option, Dexcom has come through.

Among other things, this means no more carrying around the receiver. I’m a guy who carries too much in my pockets already. I do not need one more thing to lug around, and even though the receiver wasn’t too big, not having to carry it around feels like a big weight off of my… pockets.

In addition, I’ve finally completed my Clarity account setup, which means my endocrinologist can get my Dex data too. No more downloading the data at the office visit. She’ll have it already. Cool, huh?

I’m getting the hang of navigating the G5 Mobile app. It took me a couple of days to realize that I needed to turn the phone to landscape view to be able to see more than the last three hours’ worth of data. Once I do, it’s just a push of a button to view my data in 1 hour, 3 hour, 6 hour, 12 hour, or 24 hour increments. If I hover my finger at any point in the graph, it will show what my reading was at that very point.

And I have to admit to having a little fun with the alert sounds. Instead of the basic Vibrate, soft, attentive, etc. settings available on the receiver, I have 23 different sounds to choose from. So if I want to have my low alert set to Truck Siren or Blamo Dings, I can do that. Nice touch.

I get that making an app work on two different platforms is extra work, but I am SO HAPPY that Dexcom has made the effort. Reducing the burden of managing diabetes is a good thing, and to that extent, Dexcom has done it.

The Dexcom G5 Mobile app for Android users is available for free in the Google Play store right now.

My apologies for the off-center views of my phone screen. Security features built into the app will not allow for a screen capture, so I had to take photos of my phone screen.

Disclosure: I was not given anything or asked to write anything about the Dexcom G5 Mobile app. All opinions are, as always, my own.

Same diabetes, new audience.

Many of you know that my job has seen a few changes lately. After over 19 years as part of my company’s Human Resources department, I am now in Technology.

That transition hasn’t been too difficult. I was really doing technology-related work anyway, and my daily duties haven’t changed much, though they’ve changed a little. The team I work with now has been very welcoming. It’s been about as smooth as I could have hoped.

But (and you knew there would be a But)… I’m working with a new group of people, on a new floor. And most of them don’t know that I live with diabetes. It took me years to get my HR colleagues comfortable with my diabetes. How am I going to transition my diabetes to a new environment?

Well, I have a few things going for me. First of all, I am not the same person who walked in the door of my company with barely seven years experience with Type 1 diabetes. Also, I know way, way more about diabetes, how to manage diabetes, and how to advocate for myself than I did back then.

And my company has changed too. We’re not the same white shirt, dark suit wearing uber conservatives that we were in 1998… though no one could ever accuse me of being a white shirt, dark suit wearing uber conservative, then or now. Today, as a whole, we’re much more accepting, much more caring.

It helps too that one of the people on my team, two desks down, wears exactly the same insulin pump that I do. We might be the only two pumpers in the entire building, maybe the entire company. So in the diabetes respect, I am in a much more advantageous position today.

But even if I weren’t… how would I deal with it? How do I express and educate others at work about diabetes? Pretty much the same way I do now.

By being open enough to do BG checks at my desk, and my new desk is in one of the most conspicuous places on our floor.

By checking my CGM in the middle of a meeting.

By sharing things like clinical trial participation and my volunteer work with DPAC and the Diabetes UnConference.

Sometimes, by shocking my co-workers, eating a cookie or two that someone brought in. Or by turning down a cookie or two and doubling down on water when my BG is high, and explaining that.

Now, it would be easy to say I do these things because I’m a diabetes advocate, and because I want to set a good example. Because I can hopefully help someone who encounters another person with diabetes understand. All those things are true.

But I also do these things because I just don’t have the patience anymore to bring people along slowly on my diabetes. They work with me, they should know about the diabetes. I’ve survived 26 years with this condition. I think I’ve earned the right not to keep it to myself until I’ve made them comfortable enough to handle it.

Work is hard sometimes. Diabetes can be hard all the time. I like to think that people are stronger than we sometimes give them credit for. My new co-workers are nice.

My only advice: don’t sell your co-workers short. They can handle your diabetes. And if they can’t? Better you know now. Don’t give yourself overtime trying to figure out how to ease them into the diagnosis you’re already living with.

Device failures.

I’ve nearly had enough.

The past few weeks have been full of diabetes device failures, and I’m actually asking myself how much more I can take.

Dexcom sensor failures are frustrating me more than I can express here. Since January, roughly one out of every two sensors fail without working more than a day, or ever working at all. I mean, how long do you put up with that kind of unreliability before you chuck it into a box and give up?

And believe me, I’m doing the insertions exactly the way I’m supposed to. Every time I do an insertion, I’m still going back to the online tutorial to make sure I’m not missing anything. The failed CGM sensors have definitely become my biggest diabetes nightmare.

I’ve even stopped contacting Dexcom support about it. The calls are all the same: the support person goes through their script so they can cover everything they need to cover… I get that. Usually, after about half an hour on the phone, they agree to send me a new sensor. But… how much is the sensor, and what is my time worth? In addition, I’ve had to replace a transmitter and a receiver too. In a little over five months. It’s quickly becoming not worth it.

But my pump issues are still there too. I have an Animas Vibe pump where a 200 unit limit to my reservoir isn’t really an issue. But it’s not really 200 units. Because once the pump says the reservoir is at 0 units, the pump stops… even though there are usually around 20 units left in the reservoir. So, something that could last 3 ½ days (for me) winds up lasting barely 3 days, if I don’t have other issues. Why do I have to waste 20 units of insulin every few days?

Which I almost always do, because my Medtronic infusion sets can’t seem to go more than 2 to 2 ½ days before they just don’t want to work as well anymore. At that point, I still seem to get insulin, but instead of hovering between 80 mg/dL and 120 mg/dL, I suddenly go up to 220 to 320. So I have to bolus huge amounts of insulin to try to bring my glucose level down. When I change out the set my BGs go immediately down to a reasonable level again. Why can’t an infusion set be made well enough to last the FDA-mandated three day limit? Or greater?

These are all issues that I did not experience in the five years I was managing diabetes through my previous pump and no CGM. Let me put it another way: my A1c is climbing, due only to medical device failures. This leaves me asking even more questions. Like:

Why can’t device makers make something that is simple, and not as susceptible to breakdowns?

I understand the all-consuming need to develop the next special product with all the bells and whistles, but… why can’t there be a simple option that I can use? My previous pump seemed to do everything I needed it to do. Why can’t I just choose a new version of that?

I actually like my Dexcom when it works… why can’t it work more often, with fewer breakdowns of the individual parts?

I hate to pick on individual companies. But the truth is, if these were cars, I would probably choose not to drive as opposed to breaking down on the side of the road every few days.

Granted, there still aren’t many (in a trending sense) people who are managing their diabetes through pumps and CGMs. But I don’t think that should be a reason for me to settle for inferior products. It certainly isn’t a reason for me to continue to pay for said products without noting where they are coming up short.

And without saying that maybe some device companies need to go back and make their current products as reliable as they can before devoting resources toward the Next Big Thing.

Disappointed.

That moment when someone who’s inspired you turns out to be a jerK? I experienced that this week.

There’s a doctor in Las Vegas, who goes by the moniker ZDoggMD online. He’s gotten a lot of notoriety over the years, been on cable television news, recorded videos, and basically, developed a significant social media following. I’m not going to go into too much detail… in my opinion, he doesn’t deserve any more help than he already has.

So why am I writing about him then? I think I need to get this off of my chest.

I saw Dr. Zubin Damania deliver the keynote address at the initial HealtheVoices Conference two years ago. I was inspired by how he seemed to take a different approach to health care, and how to deliver the important messages that patients needed to hear.

I’m a big fan of Turntable Health, the health care initiative he got off the ground in downtown Las Vegas with the help of Zappos CEO Tony Hsieh. After seeing Dr. Damania speak in 2015, I made an appointment to tour Turntable Health when I was in Vegas the following March. Unfortunately, I couldn’t get the story I wrote about my tour published; I couldn’t get my facts double checked by the staff there, and I didn’t feel it was right to publish something that might not be entirely accurate. But I was very impressed by Turntable Health, and by Dr. Z, as the staff there refers to him.

Fast forward to this week. Using his ZDogg online persona on Twitter and Instagram, he posted a photo designed to shame and guilt People With Diabetes. It was remarkably horrible. It was junior high school level crass.

Cue the immediate backlash from the diabetes community. Many advocates stepped forward to voice their disapproval. Reaction was swift, and at times, it was pretty intense. Which elicited responses from Dr. Z himself.

Later, he took to Facebook Live, along with a couple of friends (or employees or accolytes or something), and he tried to explain the posting. He went to great lengths to explain that he was only reposting an existing meme. Yeah, that makes it aaalll better.

He complained a lot about Type 1s and how they were overly sensitive, and how this post had nothing to do with them, and how it was really directed at Type 2s. At the end of the video, he deleted the post, and then mocked deleting the post, both at the end of the video and afterward in comments on the video.

It’s easy to get angry about behavior like this. It attempted to shame People With Diabetes… ALL People With Diabetes. It allowed people to laugh at those living with a chronic condition they will have to live with the rest of their lives. It gave voice to countless medical professionals who believe the message in his post is the proper way to treat People With Diabetes.

In addition to violating the sensitivities of everyone who believes in treating others with common decency, Dr. Damania violated two of the most important tenets of internet communication:

1. Consider carefully all the implications of what you’re posting, before you post.
It’s like salt in your stew: you can always add more, but it’s really hard to take any away.

2. You can almost never recover your reputation by complaining about the people you’ve already offended.
It’s the social media equivalent of kicking someone when they’re down. It confirms your status as the bully.

I’ve posted things I’ve had to take back. At one point or another, just about everyone does. In fact, two of the most difficult things for me are to apologize for posting something that bothered someone else; and to be happy for people who get to experience things I’ve always wanted to experience.

Those things are hard for me to do, but the difficulty I have with them is no excuse not to do them. In my case, I must express these things exactly when they will mean the most. Even when I’m not sure how sorry I am that I bothered someone, or I’m not sure how happy I am for someone else.

It’s not important how I feel about those things. It’s important how they feel about those things.

There are gray areas in reacting to social media backlash too. But what I’ve seen through this episode… from the original post, to the hurtful comments from others who chose to Do No Harm by becoming healthcare professionals, to leaving the post up and letting animosity boil until deleting the post toward the end of a less than sincere video rant… shows me that for Dr. Z, there is no gray area. He didn’t leave himself any.

If you know me, you know I’m the kind of person who tries to consider all sides of an issue before saying anything about it. I admit it… I was inspired by Dr. Z previously, and I wanted to believe he would act with compassion, if not empathy in this matter. I not only wanted to believe he would, I wanted him to act with compassion so I could believe in him again.

Which leads me to my final piece of social media wisdom: It’s okay to be unhappy. Bitterness? You own your bitterness yourself.

You have to live with your bitterness. You have to live with the cause of it. You can’t escape it without contrition.

Will I have more to say about this? Probably, in another form, in another venue. Truly, I am disappointed. I want to laud Dr. Damania, and I want to celebrate his successes. After this week, however, I find myself fearing for his patients, and fearing for the patients and acquaintances of those he has influenced.

Diabetes By The Numbers: Tidepool’s Big Data Donation Project.

Truth be told, I look to Christopher Snider as the gold standard for quality diabetes interviews and podcasts. I’ve wanted him on this podcast for some time.

Now, with that out of the way, let me tell you why Christopher was part of the podcast this week. He has a new role, as Community Manager at Tidepool.

Tidepool is a terrific nonprofit organization that helps provide a free, open platform where people with diabetes, doctors, researchers, and others can either upload or view diabetes data. Christopher explains it way better than I do, so I will encourage you to listen for that.

We spend a good amount of time talking about Tidepool’s recently announced Big Data Donation Project. Tidepool has agreed to donate ten percent of any fees they receive for selling your de-identified data to researchers. The money will go to one of eight diabetes nonprofits that you probably know well. Christopher explains it way better than I do, so I will encourage you to listen for that too.

There’s also a vague reference to Odin, the Norse god.

DBTN

Reference Material – Click below for more information on this topic

Christopher Snider is Community Manager at Tidepool:
Tidepool.org

To find out more about Tidepool’s Big Data Donation Project, go to:
Tidepool.org/BigData

Christopher Snider is host of two amazing podcasts:
Just Talking Podcast
Mark All That Apply

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