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.

The Last Five Years.

There’s a play, from a few years back, with words and music by Jason Robert Brown, called The Last Five Years. This post isn’t anything like that, but when I was listening to music from this show a few days ago, I did, indeed, reflect on the last five years in diabetes.

Have you thought about how much has changed in diabetes in the past five years?

You need to go no farther than your Facebook, Instagram, or Twitter feed to find examples of the latest drug, device, app, or DIY AP (Acronyms!) that someone is using. And that’s just fantastic, whether you use any or all of these things.

The Lions Club meeting I attended and spoke at last week had to do with food, and its role in helping People With Diabetes get and stay healthy. One of the things I told this group is that our food choices are important. But I also think of using a toolbox approach to managing life with this condition.

Knowing what specific groups of food do to your blood sugar, and making informed choices based on what you know, is just one tool in the box. Now, let’s take a look at some of the other tools added to our toolbox in just the last five years:
 
 
What about the new classes of drugs available today? They may be expensive, but there’s no question that medications like Victoza, Farxiga, and Afrezza have been beneficial to managing blood sugar, and helpful in just giving us more options to choose from.

I’ve been one of the loud lamenters of the fact that PWDs are down to just three insulin pump choices in the USA now. But what is available seems to be an improvement over previous versions of insulin pumps. Just ask anyone using the t:slim x2, the latest Omnipod, or the Medtronic 670g.

While insulin pump choice is shrinking in my country, continuous glucose monitor options are expanding. Abbot’s Freestyle Libre has been approved by the Food and Drug Administration, and we’re all anxious to find out if it works as well as we’ve heard it does. Which brings me to…

DIY artificial pancreas adopters! This is what the hashtag #WeAreNotWaiting is all about. There are Facebook groups, in-person user group meetings, and people flashing their rigs on Instagram and Twitter. Did you see this coming five years ago? Where will it be five years from now?

There are tons of diabetes apps out there. And more are coming online every day. Some do bolus calculations, some display your CGM reading on your phone (thanks Dexcom), and some allow you to download all of your devices in one place, then allow your medical professionals access to the uploaded data. I’m sure someone was thinking about this five years ago, but it wasn’t me.
 
 
Our lives with diabetes, much like diabetes itself, is ever-changing. It’s interesting to look back on the Last Five Years and see the myriad of changes that have occurred. It’s exciting to think about what The Next Five Years will bring.

Advocacy with a little “a”.

#DAM
#NDAM
#T1DLookLikeMe
#WDD
#WDD17

However you hashtag it, Diabetes Awareness Month is here again. And right behind it, a feeling of being overwhelmed by the sheer magnitude of all the posts and blue circles and everything else that makes up November for those of us living with and affected by this disease.

Then, sometime after we get over feeling overwhelmed, we move into the feeling guilty phase, where we compare ourselves to those who seem to have all their DAM Diabetes Awareness Month shit together better than we do. Especially when it comes to advocacy.

So before this gets out of hand, let’s stop long enough to take a big breath…

I’m fond of saying this to people, and I’ll probably say it tonight when I speak in front of a group from our area. This might even come as a shock to you, but here it is:

The effects of advocacy are large…
The steps we take to practice advocacy are often very small.

Hey, I want to take on the world too, and I want to bring the diabetes awareness to the masses in ways that have never been imagined before. Will I? Not this week.

Instead, tonight, I’ll sit with my neighbor, a dietician at Johns Hopkins Hospital, in front of about 20 Lions Club members. I’ll tell them about what it’s like to have to think about every single piece of food you put in your mouth, every time you eat.

I like to call that advocacy with a little a. I won’t be presenting in front of hundreds at some symposium on another continent. I won’t be crossing the country to organize and lead a protest. Instead, I’ll be heading off to Golden Corral and sharing what I know, so the people in attendance can share my message with others.

It’s a small thing to do, this advocacy with a little a. But sharing our story with others is just as important as symposia and protests. And just as powerful.

Each of us, regardless of our education level or job status or social media profile have a story to tell. It’s our story, full of chapters that many others have written, but no one else has experienced quite the way we have. We are the authors of our own epic.

Our unique perspective on life with diabetes may be exactly what another person needs to hear. It may be the exact message they’ve been searching for. Without you sharing your story, they might not receive the message you are uniquely qualified to deliver.

So before you get overwhelmed, or heaven forbid, feel guilty about coming up short this November, remember:

It’s not a contest.

The effects of advocacy are huge.

The steps we take to practice advocacy are often very small.

Advocacy with a little a is powerful, no matter what the calendar says.

Recipe!

Keeping with my Halloween tradition, and satisfying the requests I received at our party on Sunday, here’s my five year old post revealing my Cincinnati chili recipe. Enjoy!

StephenS's avatarDiabetes Blog - Happy-Medium.net

Since I finally have my wi-fi back at home, I’m sharing two things.

One is some photos from our neighborhood’s Halloween celebration. We do the neighborhood thing on the Sunday before Halloween, and this year that meant right before the hurricane. The fire department brings a truck, and the kids parade through the neighborhood to the park, where we have a costume contest. Then trick or treating. Even with the iffy weather, we had about 150 kids this year. At the homestead, we have friends, neighbors, and relatives over for a party. Photos coming up right after my recipe from the party.

When you grow up in Cincinnati, you learn two things. One is how to spell Cincinnati, and the other is how to make chili. This chili is more mild than what you might find in Texas. But very flavorful and warming on a cold night.

Also unique is…

View original post 334 more words

Questions… and gratitude.

So many questions racing through my head today…

At the end of last week, I received the EOB (Explanation of Benefits) from my medical plan for my appendectomy hospital stay in September. Immediately, my eyes moved to the overall cost of my stay in the hospital, the surgery, the intensive care, the drugs.

Total cost: $25,191.74

This included various details, all laid out in my form, including $880 per day for five days’ stay in the hospital, $2,681 to cover services in the intensive care unit my first night, $7,437 in operating room expenses, $2,278 in pharmacy costs, plus nearly $9,000 in various other costs.

As I said at the beginning, there are many questions racing through my mind. I can’t stop thinking about this. How do they come up with specific pricing? Why break out the costs into so many different categories? As always, why are the pharmacy costs nearly ten percent of the bill?

Fortunately for me, I’m enrolled in a fairly generous medical benefit plan through my employer. This plan means that my cost for this stay will be something just short of about ten percent of that bill. Still very high, especially for someone who already spends a few thousand out of pocket for drugs, supplies, and doctor visits throughout the year.

Which brings me to these very important questions: What does someone do if they are not in an employment position as advantageous as mine? In other words, what does someone do without coverage, or without adequate coverage? If it’s early in the year and you’re under a high deductible plan, and you get a big fat statement like this one, how do you pay for it?

Don’t forget, acute appendicitis isn’t something that anyone plans for. Neither is diabetes. Simply reviewing my situation, it’s easy to see why families declare bankruptcy every day due to medical expenses beyond their control.

And now, the U.S. Congress wants to allow states, through the Affordable Care Act, to sell skimpy policies to so-called healthy people. For a moment, let’s put aside the fact that this would mean huge increases in rates for the insurance options available for People With Diabetes.

Instead, since this is a diabetes blog, let’s look at it from the standpoint of initial diagnosis. Let’s say it’s early in the year, maybe February, and someone covered under one of these skimpy plans is diagnosed with Type 1 diabetes, requiring insulin every day, plus the durable medical supplies, test strips, insulin needles or pump paraphernalia, that go with it.

The good news is that the plans being talked about for this kind of individual cover a lot of the cost of “catastrophic” care. The bad news is, the insurance company decides the meaning of the word “catastrophic”.

Even if they cover the cost of a short hospital stay due to DKA or something else just as serious, they’re not going to cover any of the continuing costs of regular daily diabetes maintenance. And, as we all know, daily diabetes maintenance is anything but regular.

So, our previously healthy person is now stuck with what could be overwhelming costs, and over ten months left on a medical plan that won’t pay for hardly any of it.

That’s just a diabetes diagnosis. What about something like a stage 4 cancer diagnosis, a heart bypass, or another condition? What does coverage (or non-coverage) for those look like?

Oh, I have many questions racing through my head today. And an incredible feeling of gratitude that I am one of the lucky few who can afford what just happened to me.

Like these links.

How long has it been since I’ve posted something about what others are writing throughout the Diabetes Online Community? It’s actually been about six months.

There is certainly a lot going on in our part of the world wide web, and I hope to share some of it here. If you’ve read something particularly noteworthy, and it’s not mentioned here, please leave the link in a comment so the rest of us can enjoy reading it too. Thanks!

Now, for the latest…
 
 
There are a number of blog posts out there from people who attended the Diabetes UnConference or Diabetes Sisters Weekend for Women gatherings. Check these out:

From Kelley at Below Seven
From Mike Hoskins at Diabetes Mine
From Grainne at Blood Sugar Trampoline
See photos from the weekend from Diabetes Sisters

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Back in September, Laddie Lindahl at Test, Guess, and Go wrote about her experience using the Tandem t:slim pump and the Dexcom G5 continuous glucose monitor. Since our pump choices have been shrinking over the past two years, I think this is something you might want to bookmark if you’re on Dexcom and you’re going to be considering a new pump in the near future.

Find out why Laddie says: It Takes Flexibility

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Sarah at Coffee and Insulin is one of my favorite writers. She understandably looks at things from a millennial point of view, and I view it through the eyes of a late baby boomer. But when I read her blog, I usually learn something, either about diabetes, or about myself. And I’m moved.

Here’s why Sarah sometimes sees managing diabetes like a heavy stone

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Rachel Foster is another Writer I Like. She posted recently at Type2Diabetes.com, talking about useful strategies that help her get through the change of seasons. Some of these are really good, regardless of the type of diabetes in your life.

Seasonal Blues and Type 2 Diabetes: Fighting the Cycle

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Finally… you know how much of a fan I am about athletes who crush their athletic goals while living with diabetes:

Abby Burch over at Photograbetic just finished her first 10K run
 
 
You know, I miss doing these. Our community is still full of amazing writers, determined advocates, and people I want to get to know better. I hope you enjoy getting to know these people too. Happy Tuesday!