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.

Revisiting 48 Questions

I need something to take my mind off of my responsibilities today, so I thought it might be fun to revisit this blog post from January 2013, titled 48 Things that make me… Me.

This had originally appeared in my Facebook feed from Cherise Shockley, a lot of others picked it up, and I thought it would be fun to do too. I can’t believe it was over six years ago.

This time, I’m going to include the original answers from 2013, and my new answers (if there are any) in blue. Feel free to play along on your own social media channel. Here we go!
 
 
Here are 48 things you may not know about me:

1. WERE YOU NAMED AFTER ANYONE?
I was not.
Still true.

2. WHEN WAS THE LAST TIME YOU CRIED?
When was the last time I watched “It’s a Wonderful Life”?
Probably the last time I saw my prescription co-pay for insulin.

3. DO YOU LIKE YOUR HANDWRITING?
I have great penmanship… don’t try to decipher my note-taking, however.
I still have great penmanship, but my chances to use it are fewer and fewer every day.

4. WHAT IS YOUR FAVORITE LUNCH MEAT?
Is pit beef a lunch meat? Then YES. That’s my favorite.
I’ve become quite fond of black forest ham lately.

5. DO YOU HAVE KIDS?
No kids. Always wanted kids.
Still no kids. Will never have kids. Wish I had kids.

6. IF YOU WERE ANOTHER PERSON, WOULD YOU BE FRIENDS WITH YOU?
Yes, of course! ‘Cause I need all the friends I can get.
I’d like to think I’m a better friend than I was six years ago. I certainly hope so.

7. DO YOU USE SARCASM A LOT?
Oh, you want to talk politics now?
Do I use sarcasm a lot? Is the president hopelessly devoted to his wife?

8. DO YOU STILL HAVE YOUR TONSILS?
No! Tonsils removed when I was four years old… in 1966. In those days, they had you stay in the hospital for like five days after the operation. I still remember it. Creepy.
Despite the fact that tonsils can grow back, mine haven’t, so… No.

9. WOULD YOU BUNGEE JUMP?
I am sooo afraid of heights. But I would bungee jump. I like to confront my fears. And scream my head off through the whole process. The screaming releases the fear.
This is a big change for me. I don’t really want to have anything to do with bungee jumping anymore. Ziplining, however…

10. WHAT IS YOUR FAVORITE CEREAL?
Raisin bran. Plain enough for you?
Really, I never eat cereal. During the winter, I eat a lot of grits for breakfast. Sometimes, with black forest ham in there.

11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF?
Almost always.
Same as (almost) always.

12. DO YOU THINK YOU ARE STRONG?
This requires a “body of evidence” answer. If you asked me if I feel strong right now, I would say no. If you asked me if I’ve been strong over the last 22 years with diabetes, the answer is definitely YES.
Physically, I’ve been through a lot in the last few years. The fact that I’ve survived it does not indicate that I’m weak.

13. WHAT IS YOUR FAVORITE ICE CREAM?
From the store: Edy’s rainbow sherbet (monster high carb effect, by the way). And Trader Joe’s pumpkin. So pumpkin-ey.
Specialty brand: Black Cherry from Graeter’s in Cincinnati.
I also recently fell in love with Graeter’s seasonal Cinnamon ice cream.

14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE?
Whether they’re open or closed. Will you talk and be nice even if we seem to be different on the surface? I can usually tell within ten seconds.
It’s amazing how some things don’t really change that much.

15. RED OR PINK?
Red, Red, Red.
Other than an occasional button-down oxford dress shirt, I never much liked pink.

16. WHAT IS THE LEAST FAVORITE THING ABOUT YOURSELF?
That I’m getting older. Can’t do anything about it, so I don’t think about it much.
These days, I don’t like what I see when I look in the mirror. I’m wondering if I can ever get that old (short) swimmer’s body back.

17. WHO DO YOU MISS THE MOST?
All of my nieces, nephews, great nieces, and great nephews. Kids are still our future and worth every effort we can make for them. Even if some of them aren’t kids anymore.
Add in all Diabetes UnConference alumni.

18. WHAT IS THE TECHNIQUE THAT YOU NEED TO WORK ON THE MOST?
Remembering. Everything. Everything.
Gee, I haven’t missed a meeting in years. These days, I think I need to work harder at saying No to some things.

19. WHAT COLOR SHOES ARE YOU WEARING?
Simple black dress shoes. Honed to a bright sheen.
Sturdy brown waterproof work shoes. Pretty casual compared to 2013.

20. WHAT WAS THE LAST THING YOU ATE?
Grits and turkey sausage for breakfast this morning.
Oui by Yoplait black cherry yogurt. Surprised?

21. WHAT ARE YOU LISTENING TO RIGHT NOW?
Buckwheat Zydeco Radio on Pandora. Didn’t see that one coming, did you?
My listening is all over the map these days. Sinatra, Motown, jazz, opera, and yes, zydeco. I’m a musical melting pot.

22. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE?
Burnt Orange. Or Indigo.
I’m leaning toward the indigo at this point.

23. FAVORITE SMELLS?
Bacon, bacon, bacon!
Today, when I’m driving and I catch the scent of a good barbecue joint, I will almost always stop.

24. HOW IMPORTANT ARE YOUR POLITICAL VIEWS TO YOU?
Important enough that I care deeply, not important enough to hurt someone over… figuratively or literally.
This is a loaded question in 2019, isn’t it? I think the old rules still apply though.

25. MOUNTAIN HIDEAWAY OR BEACH HOUSE?
Both please.
It’s been a hard winter. Send me to the beach.

26. FAVORITE SPORTS TO WATCH?
Baseball on a summer day or night. Horse racing on a spring day or night. Both offer long periods of inaction punctuated by amazing moments of thrillage. I read something like that somewhere.
Still a baseball fan.

27. HAIR COLOR?
Brown.
With increasing amounts of gray.

28. EYE COLOR?
Blue.
Plus, a skin condition has made it so my eyes are almost permanently bloodshot.
I hate it.

29. DO YOU WEAR CONTACTS?
Nope. Glasses. When I can find them.
I’ve never worn contacts. Inserting pump infusion sets and CGM sensors are enough for me.

30. FAVORITE FOOD?
Steak please.
I’ve had a real fondness lately for flatbread pizza too.

31. SCARY MOVIES OR HAPPY ENDINGS?
Happy endings.
Every.Single.Time.

32. LAST MOVIE YOU WATCHED?
Men in Black 3. First straight-to-video movie I’ve ever watched. Same story… different characters.
Casablanca. “Of all the gin joints in all the towns in all the world, she walks into mine”. Though he’s so cruel and bitter in that scene, in my opinion, it’s Humphrey Bogart’s best work.

33. WHAT COLOR SHIRT ARE YOU WEARING?
Your average plain white dress shirt. With a sensible green tie. Sounds worse than it is.
Blue, to support everyone living with and affected by diabetes.
Happy #BlueFridays!

34. SUMMER OR WINTER?
Unquestionably summer.
I’ve been so cold this winter.

35. FAVORITE DESSERT?
Key Lime Pie. Or Cherry Pie. Or just Pie. Or Baklava.
Basically: If it’s made with dough, yes. If it’s made with cake, no.

36. STRENGTH TRAINING OR CARDIO?
Cardio, with just enough strength training now and then to keep me honest.
In a nutshell, that’s me at the gym.

37. COMPUTER OR TELEVISION?
Slowly but surely moving from the television side over to computer.
I am this close to cutting the cable.

38. WHAT BOOK ARE YOU READING NOW?
One Shot at Forever: A Small Town, an Unlikely Coach, and a Magical Baseball Season by Chris Ballard. I need a “no-thinking” book now and then.
I haven’t read a full book in a while. Too busy reading the news every day.

39. WHAT IS ON YOUR MOUSE PAD?
That question is so 90’s. I don’t need no stinkin’ mouse pad.
Can we retire this question already?

40. FAVORITE SOUND?
Anything involving a baseball.
Add in the sound of laughter, which has been sorely lacking in America since the 2016 election.

41. FAVORITE GENRE OF MUSIC?
I love all music. When it’s played by actual instruments. And not lip-synched.
I’m coming around to some alt-rock. Don’t have much use for “today’s country”. And if you need twenty dancers on stage with you while you sing your song, you’re an entertainer, not necessarily a singer.

42. WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME?
Kilkenny, Ireland, 2004. Such wonderful, friendly people.
I visited Brussels, Belgium for three fabulous days almost four years ago. The same statement applies… wonderful, friendly people, living in a beautiful city.

43. DO YOU HAVE A SPECIAL TALENT?
Ahem… Yes. Yes I do.
You can’t erase talent, can you?

44. WHERE WERE YOU BORN?
Cincinnati, Ohio USA on April 9, 1962. Reds Opening Day, and my father had to give up his ticket. They lost anyway, Dad.
Someone, somewhere, made a lot of money saying you can’t change where you were born.

45. WHERE ARE YOU LIVING NOW?
Baltimore, Maryland USA since September, 1994.
Still living in Baltimore(ish).

46. WHAT COLOR IS YOUR HOUSE?
Just your average brick Cape Cod.
Lived in the same home for almost 22 years. I don’t know if we’d have ever made it here, if not for the property tax and mortgage interest tax deductions that homeowners don’t get any longer.

47. WHAT COLOR IS YOUR CAR?
I have a bright red truck.
I miss my truck every single day. But now I have a nice green-ish Ford with a sleek interior, a sunroof, and a peppy turbo engine.

48. DO YOU LIKE ANSWERING 48 QUESTIONS?
These 48 questions are fun. I’m not sure I’d like 48 questions about my job.
A lot has changed in six years. And I’m okay with most of it.
 
 
Thanks again Cherise. Just like last time, this has been a good exercise to help clear my mind.

Now, back to my regularly scheduled program…

Diabetes By The Numbers: Renza Scibilia talks ATTD, #LanguageMatters, and #SpareARose


One of the surprising things I’ve found out about myself while interviewing people for Diabetes By The Numbers is that I’m one of the worst pronouncers of names I’ve ever met.

That’s horrible, especially when I have a guest as special as Renza Scibilia. Renza is a diabetes superhero worldwide, with her blog, her work for a large diabetes organization in Australia, and her presence at the forefront of the most important issues facing all of us.

After Renza gets me straightened out on the correct pronunciation of her last name, we talk about the upcoming ATTD conference in Berlin, the importance of #LanguageMatters, and how critical the Spare a Rose campaign is.

Which is timely, because this episode of Diabetes By The Numbers is part of Diabetes Podcast Week, February 10 through 16. All of the podcasters and video bloggers are throwing their efforts this week behind the Spare a Rose, Save a Child campaign through the International Diabetes Federation’s Life for a Child program.

As I’ve mentioned before, the cost of one rose (about $5 USD) saves the life of a child for one month. The cost of a dozen roses gains a child in another part of the world an entire year to play, go to school, and be with their families. Who doesn’t love that?

There are children all over the world who are depending on us. So please, take time right now. Click on the link below and share it with everyone you know. And now… here’s Renza!
DBTN

Reference Material – Click below for more information on this topic

Renza Scibilia is a gifted writer, and you can read her at:
Diabetogenic.wordpress.com

Be part of the Spare a Rose, Save a Child campaign this year by making your donation at:
LFACInternational.org/SpareARose

Are you okay with this?

Monday, United Healthcare and Medtronic went one step further on their “preferred agreement” to make the Medtronic 670g the lone insulin pump choice they will approve of without a fight.

Since the U.S. Food and Drug Administration has now approved the 670g for use with patients age 7 and older, now it’s the only one you can get for anyone 7 or older unless you work with your doctor to submit forms and do things that, under other plans, you wouldn’t have to do to get a new pump.

I wish I could say it in a nicer way. I have friends working at Medtronic, and friends insured by UHC.

I don’t know antitrust law. But… the largest insurer in America linking up with the largest insulin pump maker in America to effectively shut out all other insulin pump and continuous glucose monitor competition? Is anyone, at either UHC or Medtronic, benefiting from this agreement? In what way? How much?

Everyone I’ve spoken to who has used the 670g likes it. I’ve rarely heard anything negative. But shouldn’t patients be allowed to choose what they want to wear every day anyway? If they are allowed, pending certain requirements being met, to choose a different option, why should there be an agreement in the first place?

United Healthcare is fond of saying that over 90 percent of their patients with diabetes who choose insulin pumps already choose Medtronic. That’s disingenuous, because they’re effectively forcing patients to choose the 670g anyway.

Meanwhile, Medtronic has a goal of dominating the market. Until these United Healthcare agreements came into play, I believed it was because they were convinced they had a best-in-class product.

If you believe you have a best-in-class product, why work so hard to squeeze off opportunity for your competitors? It’s clear to see the detrimental effect this will have to Tandem and Dexcom, as well as any new entities working on closed loop solutions here in the USA and around the world.

There is more money to be made on pumps and CGMs in the United States than anywhere else. Medtronic seems to be doing its best to get the most of that market for themselves. Not through competition, but rather by stifling it.

United Healthcare is getting its own benefits from whatever it gets from Medtronic, the ability to streamline paperwork and approvals for 90 percent of pump and CGM patients, and the framework for similar agreements affecting patients living with other conditions.

Do you feel like this is unfair? Do you feel People With Diabetes should be able to freely choose to use any device that works best for them?
 
 
Send your e-mail to United Healthcare telling them this is wrong
 
 
Thanks to JDRF and their #Coverage2Control initiative for the link.

If you’re a person living with diabetes, or a person caring for someone living with diabetes, there is absolutely no good reason for a decision like this to be allowed to go forward without a fight.

Transitioning into year 29

It dawned on me over the weekend… Last week, I hit the 28th anniversary of my diabetes diagnosis. Given the fact that I’m 56, nearly 57, I’ve now lived about half of my life with this condition.

I have to be honest. I’m just too busy these days to consider the impact of another diaversary. There is too much going on in my personal and professional life to spend much time worrying, celebrating, or even contemplating what 28 years means.

Just reading that gives me the willies. But I’m working on it. I’ve been telling close friends that I’m working on unspooling my life over the next year or two.

My schedule is just wound too tight right now. It’s too full of things I don’t get joy from, and not full enough of things that make me feel good. So… unspooling is an operative word for me right now.

I don’t know what the end game of that looks like. But I’m not afraid of it either. It will probably involve transitions, and will probably involve things that I’m not involved in right now. But the focus is: more joy, less meh.

This isn’t just about diabetes advocacy. It’s about everything. I’m not spending enough time with friends and family. I’m not enjoying my time off enough. I’m not challenging myself anymore… I’m just checking off the boxes.

I think the positive thing is that I’m in a good place with my diabetes. My numbers are good. I have to choose a new insulin pump in the next nine or ten months, but I’m not too worried about that. I’ve come to grips with the everyday CGM ups and downs, and I’m okay with that too.

As a result, I think I’m starting to consider what the next phase of my life will look like. I’m not in the next phase yet, but instead of living in the moment (or even worse, living in the past), I’m actually looking forward, and I like what I see in the future.

The passage of time isn’t always bad. We learn from what we’ve experienced, and we can certainly look back and say 1) I’m glad I lived through it; and 2) I’m glad I don’t have to go through that again.

And it informs what we do going forward, hopefully in a most positive way. I like how year 29 of my diabetes is shaping up. Watch this space for more in the coming months!

Welcome to February #SpareaRose

Welcome to February. Welcome to Spare a Rose, Save a Child.

In over 50 countries around the world, children diagnosed with diabetes are in serious need of insulin… meters and test strips… basic diabetes education. In the countries they live in, money and resources are also hard to come by.

That’s where the International Diabetes Federation’s Life for a Child program steps in. Thanks to your life-sustaining donation to the Spare a Rose, Save a Child campaign, these children have a chance.

Now until Valentine’s Day, February 14, do the simple math: the value of one rose you might buy for a loved one (about $5 USD) can help to save the life of a child for an entire month. That’s a very measurable way to consider the impact of your important donation.

What your donation means is that in places where diabetes is a critical diagnosis for a child, kids are provided with insulin; meters, test strips, and lancets; diabetes education; and even diabetes training for local medical staff.

Click on the giving link and donate today:
LFACInternational.org/SpareaRose

Don’t forget to share the giving link with your friends at work, at school, and on social media too.

Spare one rose this Valentine’s Day, save a life of a deserving child for an entire month. Spare a dozen roses and save a life for an entire year.

There are a lot of things we can’t do. We can’t cure this disease all by ourselves. What we can do, one by one, is make a contribution that will make all the difference in the world for a child who might face quite a bleak future without our intervention.

Spare a Rose this February. Save a life. And… Thank You.

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