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.

Three large companies want to disrupt healthcare. Don’t hold your breath.

February 6, 2018 – 10:11 am

I’ve been waiting to write about this until I could consider all sides of the story. Now that I’ve had a few days to mull it over, here are my thoughts about the Jeff Bezos/Warren Buffett/Jamie Dimon healthcare whoziwhatsis.

Let me preface my remarks by saying that this is NOT financial advice. I don’t know squat about what you should do with your money.

Now, some basic facts: The companies that are run by the three business titans noted above are partnering to explore ways to reduce the cost of healthcare, first for their own employees, then, potentially other companies’ employees. After the announcement, the Dow Industrial Average lost over 300 points. Since then, over 1500 more points have been shaved off the Dow.

The initial selloff last Tuesday affected insurance company stock as much as anything, and that’s understandable to a degree. But to this observer, the panic seems to be a little premature. Right now, to borrow a little political vernacular, this announcement is a big nothing burger.

I mean, sure… Amazon has made a mountain of money changing the way people shop. Berkshire Hathaway has made investors rich for over 40 years. And JPMorgan Chase is America’s biggest bank. However, healthcare in these United States is full of layer upon layer upon layer of complexity, and getting through all that complexity will take time. Maybe a lot of time.

At the federal level, there is government regulation and government regulators. Healthcare is regulated in the individual states too, and sometimes, even at the local level.

How about doctors, nurses, and other medical professionals? Some of them charge so much for their services only because the cost of their education was so high they have to charge extra just to break even after paying on their student loans.

And since we’re in the 21st century, we have to consider technology. Not the kind that helps us deliver insulin or tells us our glucose levels. I mean the kind of technology that intersects patients all over the country, and for now at least, allows providers to get paid based on medical codes entered through software designed to help them figure out what each treatment is worth.

Hey, guess what? I haven’t mentioned a thing yet about insurance companies or drug prices. Like I said, layer upon layer upon layer of complexity.

If Bezos, Buffett, and Dimon are going to revolutionize healthcare in the USA, they have their work cut out for them. It’s going to take a while.

Insurance premiums are three times more expensive than they were 18 years ago. Out of pocket deductibles for these plans are three times more expensive than they were 12 years ago. There’s a sea of red tape to wade through to help companies and patients get affordable, accessible, compassionate healthcare.

But… we won’t really know whether the cycle of escalating costs can be broken unless someone actually tries. Whoever tries will need deep pockets to succeed. And a fair amount of patience. This triumvirate of business tycoons has the money. Let’s hope they have the intestinal fortitude to see it all the way through.

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DPAC Joins DAA.

February 1, 2018 – 10:11 am

News broke this week that Diabetes Patient Advocacy Coalition has joined forces with the larger Diabetes Advocacy Alliance. I’ve spent some time volunteering for DPAC in the past, but regarding this announcement, I don’t know any more than what is publicly available. Let’s take a look at that:

Diabetes Patient Advocacy Coalition is a 501(c)4 organization that helps to promote important diabetes causes before local, state, and federal elected officials and policy makers. DPAC has been successful too… testifying before congress, taking part in important discussions on insulin pricing, and many other achievements.

They’ve delivered an extremely powerful app that helps individual citizens take action on issues quickly and easily. They’ve educated and informed before many, and for what it’s worth, I’ve been proud to represent them at Friends for Life events over the past two years.

Diabetes Advocacy Alliance is just what its name indicates: an Alliance of groups dedicated to advancing the causes important to people living with diabetes. In joining DAA, DPAC will be joining the American Diabetes Association, the American Association of Clinical Endocrinologists, the American Association of Diabetes Educators, the American Medical Association, and others in an effort to collectively amplify all our voices.

The impression I get here is that DPAC is still going to be DPAC. But we’re all aware that there are a number of disparate voices out there, all advocating for diabetes while advocating for different things. Where we’re able to join forces, we appear stronger to the people we’re advocating to.

Joining this alliance should help DPAC partner with other organizations to raise awareness and push legislators to act on our behalf. And in my book, that’s always a plus.

You may ask… what about the corporate organizations that are also part of Diabetes Advocacy Alliance? Is that okay?

Well, first of all, they wanted to be part of the alliance, or they wouldn’t be there. They could have ignored this group, or even spent time and money to try to render it ineffective. Instead, they climbed on board as members.

Second, wow… an organization with members who may not always have the same priorities at the same time… sounds like Washington! If they can do it, DAA can do it too. And believe it or not, there could be times where my goal and a company’s goal may actually be the same. Maybe more often than you might think.

DPAC’s CEO, Christel Marchand Aprigliano, put it this way in the press release announcing the news:

“With the current U.S. healthcare system spending more than 1 in 5 healthcare dollars on diabetes, there has never been a more important time to advocate for the long-term health of our community.”

I could not agree more.

I’m always interested in how new collaborations will turn out. I know that the missions of Diabetes Patient Advocacy Coalition and Diabetes Advocacy Alliance are great for partnering for more people, more effectively, more often. Here’s hoping that my goals remain their goals, and those goals have a greater impact through this collaboration.

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This is what 27 looks like.

January 30, 2018 – 10:11 am

Aaaaand, just like that, I’ve hit the 27 year mark of living with Type 1 Diabetes.

No use burying the lead here. It is what it is. A cliché is a cliché. However, there is something unique about this coming year that makes it different from any other year living with this condition.

This next year is the last year I can say that I’ve lived more than half my life without diabetes. If you’re doing the math… I was diagnosed at age 28, so next year, I’ll officially be even diabetes- and non-diabetes-wise.

”It is not the strongest of the species that survives, nor the most intelligent, but rather the one most adaptable to change.” – Clarence Darrow

Yet, I feel particularly good about this. In fact, I feel pretty good in general. I know I’ve had my medical issues in the past… knee surgery, pneumonia, and an appendectomy all in the past three years. But right now, in this moment, I feel strong.

I haven’t come down with the flu yet. And I got the vaccine back in October, so suck it all you vaccine naysayers. I’m getting a fair amount of rest lately, and I’m handling things at work pretty well during a very busy time.

”Keeping an active mind has been vital to my survival, as has been maintaining a sense of humor.” – Stephen Hawking

I don’t know how much interaction I’ll get with my fellow friends living with diabetes this year. I really hope I do. But I have plenty of demands on my time anyway, so I’m going to hope, but not worry about it.

In many ways, I’m going to treat this year as I’ve treated the past several years: do my best, accomplish what I can, don’t worry about the rest. Something is everything, if you know what I mean. I’ve got goals like everyone else, but goals are internal, while accomplishments tend to be outward. That’s the way I think about it anyway.

“It’s crazy, how similar we are. Here’s both of us, working through our stuff, trying to make something positive out of something really bad.” – Jenny Han

I will say that I’m excited about getting the podcast going again. There are many stories waiting to be told, and I can’t wait to get back to listening to people tell them.

You know, it’s funny… here I am talking as if my diabetes is wrapped up in my diabetes social media exploits. It’s not. There are many places where they intertwine, but one is not exactly the other.

”Extinction is the rule. Survival is the exception.” – Carl Sagan

Really, what I want to do today is reflect on the past 27 years. I want to remember what those early days were like. I want to remember the terribly difficult times, and how I got through them. I want to take a moment and be grateful I survived it all. Because you know that with this disease, nothing is guaranteed, decade to decade, year to year, month to month, day to day, or even minute to minute.

27 feels really good today. 28 would be better. 29, 30, and beyond are waiting for me.

”Survival is how I got here. Resilience is how I’ll remain.” – Stephen Shaul

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Quantifying my eyesight.

January 25, 2018 – 10:11 am

I don’t talk about medical appointments much lately. After blogging for almost six years, how many times can I write about going to see the doctor?

My quarterly endocrinologist appointments, checking in with my primary doctor a couple of times each year (if I don’t get sick), maybe a podiatrist or dermatologist appointment now and then.

And… my yearly check-in with my ophthalmologist.

In less than a week, I will celebrate 27 years with Type 1 Diabetes. Every year, for 27 years, that meeting with the eye doc is the one I’m probably least prepared for.

Ask me about my diabetes? No problem! Ask me for data on glucose trends, or whether I’ve been in range lately, and I can knock it out of the park. I still have diabetes, but at least I can quantify it.

But eye visits are different. All I know is that my vision hasn’t been as good the past few months as it had been before that. My preparation for this appointment was basically to clean my glasses really well and hope for the best.

That’s my problem. I’m generally the guy who doesn’t want to worry about bad news until he actually hears it. But when you don’t really know what’s going on until you get there, every year hearing ”No sign of retinopathy”, while welcome, makes me think about how many more bullets I’ll be able to dodge until the diagnosis comes.

The flip side of all this is that if you worry, when you hear everything’s okay, you want to kick yourself for worrying so much. We can’t have it both ways. Or can we? This time, I was worrying a little, but carrying myself like it was no big deal. Fake it ‘til you make it, baby.

So it was a tremendous relief to hear “No cataracts, no glaucoma, no sign of retinopathy”. In the end, my real problem was that I worried too much.

I have a new prescription. I’ll probably get new frames this year too. I’ll also try to remember to take better care of the body I’ve got, eyes included. And if I can, I’ll work on worrying less, and using the gift of eyesight to see things clearer than ever before.

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The Dog Days of January.

January 23, 2018 – 10:11 am

How about those dog days of… January?

In the grand American game of baseball, August is the month known as the dog days of summer. It’s when writers and broadcasters wax philosophically about needing to stay focused, stay the course, and stay on a winning trajectory. The season is long, say the pundits. In August, you’re already five months into the regular season, with still another month of the season to play in September. You can’t let down now. Bear down. This is when champions are made.

In real life, we often concentrate on May, as Mental Health Awareness Month, or on December, because we know that a lot of people feel left out or are feeling troubled during the holidays. But what about January?

In North America and Europe, January is the first full month of winter. The sun is low in the sky, and there aren’t many hours of sunlight each day. We’re going to work in the dark and coming home in the dark. The temperature dips. Even when we’re off of work, we tend to stay home, where at least it’s warm.

Where we can easily be forgotten. It’s where we can easily fall prey to inaction and eating poorly and every other factor that makes us care less for our diabetes and our overall well-being. And before we know it, we feel like crap.

It even happens to people like me, who generally have an upbeat outlook on things. I generally don’t let things get me down. I mean, what do I have to feel down about anyway?

Yet, I have to admit, when I looked in the mirror last week, my look reminded me of the dog days, winter edition.

Unlike baseball, when this happens to us the fix is more than just staying the course, bearing down, playing like a champion. It involves a number of things. If you’re not exactly feeling spectacular right now, I hope you might find a few of these helpful:
 
 
– Find time for sunshine. Weatherwise, it’s been nothing but gray in my city lately. I’ve been working a lot. When I’m off, I have things to do, appointments to keep. What I needed was a chance to stop and breathe, and feel the sunshine. Change my viewpoint.

So over the weekend, I went to the local conservatory. Not exactly out in the sun, but it’s warm, and every room is a greenhouse. It is not over exaggeration to say that sometimes, just fifteen minutes in a quiet corner there can change my whole outlook on life. It’s just what I needed.

– Activity activates. This is where that endorphin thing comes in. Even if you’re only taking a walk, being active can give you a sense of purpose, a sense that you’re fighting back. I don’t know if it helps cure more serious illnesses, but in my case, being more active this time of year really perks me up.

– Writing and Reading. If you think of writing as self-expression, you begin to understand why the term “Get something off my chest” carries so much sway. Writing helps me do that, whether it’s here or in a forum that no one else can see.

And we’re not the only ones writing great things. If we can’t find the motivation to inspire ourselves, there’s nothing that says we can’t find inspiration elsewhere. Sometimes, it’s where we least expect to find it. But we won’t find it if we don’t look.

– Help someone else. We’re likely not the only ones we know feeling a little down this time of year. Even if you don’t know someone who needs a pick me up, there are plenty of others who need mentoring… need a meal… need something warm to wear out in the cold. Often, doing something for others results in something that helps us too.
 
 
One additional thing I should mention is that it’s important to give yourself the time for all these things. Often, just the act of granting yourself time to think or explore again is just what we need.

I don’t want anyone to think that these are cure-alls for more serious forms of depression or anxiety. There are many cases where care from a professional, or even a prescription might help your day have a little more sunshine too. Like time, granting yourself permission to seek help may be the greatest gift you can give yourself.

Wherever you are, whatever you’re feeling, and however your life unfolds, I hope that you can find the happiness and peace you deserve. No matter what happens, I support you… no conditions.
 
 
We’ll be discussing the January Blues and what each of us does and can do about them on Twitter Wednesday night at 9:00 p.m. ET(US). Follow @DiabetesSocMed, @StephenSType1, and the #DSMA hashtag and join the conversation!

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