Off the Dial

Welcome to my home for my take on everything diabetes-related. Here is where I try to keep my son’s condition in perspective, and share hopeful and inspiring stories, opinions, and knowledge, as well as our common struggles. Join me to share your wisdom, too. We’re in this together.

Steel Magnolias is Back? Sigh.

When my son was diagnosed with type 1 diabetes just before he turned two, I had a lot of thoughts about his future. Getting pregnant wasn’t among them. But as we shared the news and explained type 1, a few friends said, “At least he won’t end up like that poor girl in Steel Magnolias.”

What?

It’s hard to remember but through all the great dialogue and amazing women in the movie, the center piece of Steel Magnolias, and the impetus of that wonderful “laughter through tears” line, is that the Julie Roberts character dies from complications of type 1 diabetes. “Drink the juice, Shelby” is her mother desperately treating a dangerous low blood sugar.

I love Steel Magnolias. I had a huge crush on Tom Skerrit back in the day (omg, I know) and I cry and laugh every time I watch it. But I know people in the diabetes community who get angry, who won’t ever watch it again.

It is a true story. Robert Harling wrote the play after his sister died in 1985. It can still happen; fortunately, it’s not the story of most women today with T1D who want children. The problem? For the most part, Steel Magnolias is still the only story out there.

This week, as the movie returns to theaters to mark it’s 30 year anniversary, I’m reissuing an episode we first put out when my local community theater performed the play. My guests are all moms who live with type 1: Kerri Sparling, author of Six Until Me & “Balancing Diabetes.” Melissa Lee, Director of Community Relations for Bigfoot Biomedical & Kyrra Richards, founder & Creative Director of Myabetic.

It’s a wonderful round table – they all have strong reactions to the story, but they also have terrific advice for women with diabetes. We get away from Steel Magnolias a lot (cheeseburgers come up for some reason?) and they share real-life pregnancy and T1D stories and experiences from which we can all learn.

Melissa Lee put her finger on it late in our discussion when she pointed out that Shelby had no community. She had no one to truly listen and understand, to say yes and to help her find a way. I hope hearing this round table helps you find your “yes.”

Listen here, at diabetes-connections.com or on any podcast app

Avengers: Endgame

The Marvel Cinematic Universe has been a huge, fun part of my family’s life. We didn’t let the kids watch the early stuff – Benny was only 4 when Phase One began – but they’ve made up for that lost time. Lea’s favorite is definitely Iron Man. I stan the big Dorito himself, Captain America. But Slade and Benny are Hulk fans. Slade because of the 1970s TV show (he watched with his mom) and Benny because of diabetes.

Hulk Smash Inset!

When B was little, he didn’t understand why his high blood sugars would make him feel cranky. It’s hard for toddlers to express when they feel bad even without diabetes. My non-D daughter never said, “I have an ear infection” when she was in pre-school. She just got super-cranky. Same thing with Benny and high blood sugar. But as he got just a little older, maybe ages 5-6, we were able to start working on a few strategies to help. One of the best involved the Hulk.

We told Benny that he was a lot like the Hulk when his blood sugar was high and he felt angry and mean. But unlike Dr. Bruce Banner, he could learn to control the big green guy.

We started by having him recognize that he was high – of course we’d test first – and then he’d work on removing himself from the situation. He could go to his room and beat up a stuffed animal or yell into a pillow. He could sit quietly with me and color and drink water and be mad. But he couldn’t “release the Hulk” on other people.

It wasn’t perfect but it helped him process what was going on. And gradually he learned. As a teenage boy, he still has outbursts (thank you testosterone plus diabetes) and he’s still improving. But he’s got someone (something?) to whom he can relate. That’s why the Hulk, who had always been my husband’s favorite, is now also Benny’s.

More on Marvel & diabetes in this week’s podcast (along with great info on how to keep your insulin cool without power or a fridge)

#DPodcastWeek 2019

Here we go! Diabetes Podcast Week is here!

If you already enjoy listening to one show about diabetes, I hope you’ll give another one a try. If you’ve never heard a podcast, this is a great chance to jump in.

All this week (February 10-16th 2019) the shows listed below are joining together to tell our listeners about the Spare a Rose campaign, to benefit Life for a Child. We’ll also have some fun with cross promotion.

The list below will take you to the episodes specifically published during #DPodcastWeek (the links will be updated as the episodes are released). Different shows are hosted on different platforms so the players here may look different from one another, but they should all play right here in this post. Any show without a player has a clickable link to the #DPodcastWeek episode.

To visit the homepages of the shows and and find other episodes, click here or search on your favorite podcast player.

#DPodcastWeek 2019 episodes

Behind the Betes

Listen to “Episode 4: Going Home” on Spreaker.

 

 

 

 

Divabetic – Self-Acceptance & Diabetes with Musical Inspiration From Dolly Parton

Game Plan T1D

 

Pancreas Pals

Real Life Diabetes: An Inspiration to the T1D Community Lauren Bongiorno

 

 

spare a rose, save a child logo

Diabetes Podcast Week 2019

Diabetes Podcast Week is coming! For the 4th year, podcasters in the diabetes community will come together to help you find great shows and learn about a terrific charity.

For the week of February 10th, 2019 shows that take part will tell our listeners about the Spare a Rose campaign, to benefit Life for a Child. We’ll also have some fun with cross promotion and spreading the good word about podcasts.

Please reach out to get added to the list below! There are new diabetes podcasts popping up all the time so I’m sure we’ve missed a few. And while these are all T1D shows, any type of diabetes podcast is welcome.

#DPodcastWeek 2019 (as of 12/13/2018)

Behind the Betes

Dads and Diabetes
Diabetes by the Numbers
Diabetes Connections

Diabetes Juvenil (spanish-language)
Diabetics Doing Things
Divabetic
Game Plan T1D
Just Talking
Pancreas Pals
Real Life Diabetes
Sound Bites Podcasts

 

sign up: dpodcastweek@gmail.com 

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Diabetes Awareness Month

Some round-up thoughts this #NDAM..

For the past several years, I’ve used the month of November to showcase people in my local area living with type 1. You can head over to my public Facebook page or Instagram to see the pictures and read their stories. If you found this post and you live in the Charlotte, NC area, please consider joining our parent group or one for adults living with type 1.

Thanks to the Charlotte Observer for publishing a column I wrote, “What the Diabetes Community Wants You to Know.” I asked my podcast listeners for their ideas and I was thrilled with what they came up with. I heard from several people outside the diabetes community who thanked me for opening their eyes to what living with diabetes is really all about.

On World Diabetes Day (Nov 14th) I was asked to stop by my local NBC affiliate to do some basic info stuff.  Always fun to go back on the news (I spent 10+ years in local TV and another 10+ in radio).

There are too many terrific blogs, Facebook posts and other stories to list here. But please consider following the hashtags #NDAM #DAM #DiabetesAwarenessMonth #MakeDiabetesVisible and #T1DLooksLikeMe to connect with great people. And we can do that all year long!

 

 

 

Back to School!

“They won’t let me on the school WiFi!”

“They changed our staff and we only have a part time nurse!”

“I’m just going to sit the parking lot all day.”

The back to school posts have begun. But don’t panic! Here’s what you need to know when you send your child with type 1 to school:

It’s going to be okay.

I’ve been there. I know the worry. My son was diagnosed at 2 and is now in eighth grade. We’ve had our ups and downs, in school and out with T1D.

In our local Facebook group, the big questions are about CGM and remote monitoring.  At least two large area districts seem to have changed their policies about staff following students’ CGM systems at school. These are schools that last year allowed staff to follow using dedicated devices left at school. We’ve already seen many schools ban staff from using personal devices for that purpose.

This week on the podcast I speak with Crystal Woodward, the director of the American Diabetes Association’s Safe at School program. We focus on daycare, preschool and elementary school. We talked about CGM and working with schools through disagreements, but we this issue of sudden policy change came up after our conversation.  I circled back with Crystal and she said, “If you are seeing these posts would you please respond by suggesting that they call the ADA at 1-800-diabetes or email us at askada@diabetes.org for information and guidance.”

She also said that the ADA is working on updated CGM guidance (she mentions this during our interview). Right now, they believe that “the use of data share capability should be based upon individual assessment of each student. It can be a useful tool for all stakeholders and that the family, health care provider, and school nurse should work together to determine an agreed-upon approach and process for using.”

Here’s my take as a mom of a kid who didn’t have a CGM until age 9 and no remote monitoring until he was in 5th grade. I honestly don’t know how these nurses follow all the kids at big schools and do everything else their jobs require. We have more than 1000 kids at some local elementary schools! I am 100% in support of parents and their medical care team creating a school plan that works for them, but I worry that parents think if someone isn’t watching their child’s receiver all day long that the child is going to be ignored.

Remember, until about three years ago, there wasn’t a kindergartner in the country with remote share options. The schools, doctors and legislators are playing catch up as the technology moves faster than the policy and legalities. Not saying you shouldn’t push; I love our Dexcom, but it should be a useful tool, not a burden.

I do think these schools need to get their policies straight, consistent and well-publicized. The first week of school is not time to be springing new stuff on stressed out parents. That’s just not fair.

What can you do? Treat your school staff like part of your care team. Use that kind of language: “our team,” “working together for the same goal,” “how can I help?” Save the torches and pitchforks for when you really need them – and unfortunately, some parents really do need to fight; I know not every school staff is supportive and helpful. Know your state laws (click here for a state-by-state guide) and don’t be afraid to call an advocate or even a lawyer. But that should be the last resort, not the first option.

I hope this week’s show helps you learn more about your rights, federal law and school policy. I also hope it helps to hear Crystal and I talk about sending our kiddos to school with “older” tech. Her daughter was diagnosed at one and is now a healthy, happy 27 year old ICU nurse. Benny tells me he’s a “senior in middle school” and he’s ready to take on the world.

Wishing you a great start to the school year!

Listen to this week’s episode here, on the home page or on any podcast app

Lilly Diabetes Blogger Summit

Of course it’s about insulin prices.

I’m just back from the Lilly Diabetes Blogger Summit where they showed us their bid to enter the diabetes device market. It’s a pump and a pen and a connected system and it looks fantastic. More on that soon. But anything that has to do with Eli Lilly, Novo Nordisk or Sanofi is of course about insulin prices right now. The diabetes community is demanding it.  It hangs over every aspect of the conversation. And when a group of people who live with type 1 are in a room with executives, you better believe we bring it up.

(I brought it up here in my initial podcast episode with Dr. Howard Wolpert & Marie Schiller in December; Schiller is the lead on this project, Dr. Wolpert is a key researcher and both spoke at this summit. We did a whole episode on pricing with Mike Mason, Vice President Lilly Diabetes and Dr. Sherry Martin, Vice President of Medical Development a few weeks ago. Listen to those and all episodes of Diabetes Connections on the home page or any podcast app).

lilly cambridge panelThe focus of this two-day meeting at the Lilly Innovation Center in Cambridge wasn’t price or access. But attendees pushed to keep those issues front of mind.  I asked about coverage; like most, my insurance company determines which type of fast acting insulin we use by only covering the cost of Novolog or Humalog. I asked the panel if I can’t even choose what insulin my son uses year to year, how can Lilly assume I’ll have access to this pump system? I also asked if they’d promise this will not be a proprietary system using only Lilly insulin. Many bloggers asked about the current pricing of insulin and urged the researchers and executives to keep those who can’t afford the basics, who must choose between insulin and food or rent and insulin, in their thoughts.

Were the answers complete and satisfactory? Of course not. The people at this summit don’t control pricing or work directly with insurers. They’ve been hired to make a new diabetes device. I’m sure Dr. Wolpert and Marie Schiller in particular would love to announce that Lilly is changing things.  Schiller has lived with type 1 for more than 30 years and Wolpert’s wife just marked 50 years with T1D (his Dexcom Follow App went off at our dinner with an urgent low for her, while I was watching my son’s BG creep higher).

Personally – and this is all speculation on my part – I think this is going to be addressed with policy in the next few years. There is a backlash building right now to pharma prices within and without the diabetes community and the threat of taking away Obamacare and other issues will usher in more left-leaning/progressive candidates in 2020 than anyone would have predicted a few years ago. My unsubstantiated thinking is that Lilly senses that insulin prices will soon be limited. Entering the device market gives them a new revenue stream using existing product.

Cyniscim aside, the Lilly system itself is really cool. If it were available today, I’d want Benny to try it and I think he’d love the size, shape and features. Glu did a nice quick write up as did DiaTribe.  The pump is a small disc, about the size of a stopwatch or even a large poker chip, about two inches across and very thin, maybe half an inch. It will have longer tubing options so you can wear it in your pocket or shorter tubing so you can stick it to your skin. The pump is controlled on your phone (or a dedicated controller if the FDA is still fussy about that when this comes to market in 2-3 year) but can also give limited doses from the pump device itself. Huge for people who like the idea of a patch pump/pod pump, but hate the idea of losing the controller and not being able to use the device (i.e. me).

I was disappointed that Lilly plans to use current infusion sets with this system.  Since we started pumping, I’ve said that the inset is the weak link and studies prove that. Does anyone love the inset they use? I was hoping this system would show us a breakthrough. But first-gen here means using what’s on the market.

There’s an insulin pen as well, which is meant to be used with any CGM or meter. Everything is connected with an app and an “ecosystem” that acts as a closed loop for the pump and the closest thing you can get to one with the pen – predictive dosing, etc. Lilly has chosen to go for the closed loop out of the gate and not release the insulin pump as a standalone. They’re working with Dexcom, DEKA, Rimidy and McGill University to make this all happen. Reps from those companies made up a second day panel (not pictured),

I’m still not clear why Lilly thinks this can succeed when Animas (backed by the not-tiny Johnson & Johnson) just closed up shop. I did ask that question and was told that because they’re committed to this and believe in this product, they’ll succeed. I hope so. I want them in the market. I want more choices for my son and I want more access and better prices for everyone. This post may sound cynical, but I’m excited about this system.  It looks like it will take more burden off the user and I believe the people involved are committed and passionate about making diabetes easier.

I’m not so naive to think my questions will change the world, but I’ve worked hard for a seat at this table. I take that responsibility seriously and I’m not going to waste my voice when it can be heard.

Lilly paid for my travel and lodging for this summit.

 

 

Diabetes Podcast Week 2018

DPodcastWeek No Date

“Why on earth would you promote other people’s podcasts?”

I’ve been asked this question a lot since I started Diabetes Podcast Week in 2016.  In radio (my past life) you would never mention a competitor’s name, let alone link their show up on your site. But podcasting is different. And podcasting about diabetes is completely different. I’ll explain more, but first…

Diabetes Podcast Week kicks off February 11th! More than a dozen show hosts will rally their listeners to learn about and donate to the Spare a Rose, Save a Child campaign. The idea behind Spare a Rose is simple: buy one less rose this Valentine’s Day and donate the value of that flower to children with diabetes. Donations go to Life for a Child, an International Diabetes Federation program which provides life-saving diabetes supplies, medication, and education that children in developing countries need to stay alive.

You’ll see a lot of posts and information this month about Spare a Rose and Life for a Child. During #DPodcastWeek we’ll talk about the campaign on our shows, but mostly it’ll be the same great info and conversations about T1D we strive to create every episode.

spareIDFI’m excited that this year, you’ll hear some new voices on familiar shows. A lot of the hosts have made promos that will play in the other podcasts.  Which brings me back to why competition isn’t really a thing here. In podcasting, you listen when you want. You don’t miss my show if you listen to another. Most podcast listeners subscribe to more than 4 shows and many listen to 10 or more every week. And with diabetes, we all have a different story. Find the show and the host that speaks to you, as a parent of the T1D child, as an adult with diabetes as a person who wants info about food or sports or whatever. It’s all out there. Don’t believe me? Here’s this year’s list:

#DPodcastWeek 2018:

Beta Cell Podcast – Craig Stubing

Bravest  – Craig Kasper

Chronically Motivated – Chris Ruden

Diabetes Connections – Stacey Simms

The DiaCast – Adi, Brent & Cas

Diabetes by the Numbers – Stephen Shaul

Diabetics Doing Things -Rob Howe

Diabetic Running Podcast – John Foti

Divabetic – Max Szadek.

The Guilt-Free RD – Melissa Joy Dobbins

Just Talking – Christopher Snider

Type 1 Entrepreneur – Chris Stocker

Real Life Diabetes – Amber Clour & Ryan Fightmaster

Want to jump in or learn more? Get in touch: stacey@diabetes-connections.com.

Make sure to tune in! Diabetes podcast week begins February 11, 2018.

Diabetes Forecast: People to Know

“Diabetes Forecast®, the Healthy Living Magazine of the American Diabetes Association, names Stacey Simms as one of 12 People to Know for 2017.”

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Me & Ben Vereen? Are you kidding? What else to say, but thank you!? (Click here to see the issue online)

Thank you to the editors and the committee who puts together the issue. Thanks to Jonathan Shuffield who interviewed me for the issue and editor Kelly Rawlings who informed me I was on the list. You can hear both of them on the podcast this week (click the handy player down below to listen right now).

But really, this is a thank you to you, my listeners. I’d like to say I started Diabetes Connections because I had a singular desire to help people. That I wanted to help newly diagnosed families realize it would be okay and help long-time T1Ds find new inspiration and motivation. Honestly? It’s because I couldn’t stop talking back to my radio.

After working in broadcasting my entire career, the brutal hours finally caught up with me. But when I left my early morning radio job, I found myself talking back to the podcasts I listened to, the radio shows I enjoyed. One day while walking my dog and yelling at Terri Gross, I knew I had to start my own show.

Just over two years later, to have this kind of validation is an incredible feeling. But it only confirms what I already know from emails, social media messages and, when I’m really lucky, in-person meetups. Listening to the voices of our community is helpful. Hearing stories of connection is vital. And knowing we’re not alone is invaluable. I’m here to tell those stories. Thanks for allowing me that privilege.

(click on the big blue play button to listen right here)


 

 

More Than Diabetes #DBlogWeek


Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)

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I’m glad the last day of Diabetes Blog Week asks us to write about something other than diabetes. Turns out, I was unable to participate in most of this event this year, and for once, diabetes wasn’t to blame. Amazing, right?

Most of the stories I share are about my son with type 1, or my family’s experience with diabetes. I rarely talk or write about my daughter or share a lot of stories about my kiddos that don’t have to do with T1D. They’re at the age where they’re old enough to have their own stories. And we have a family policy of not over-sharing on social media. That means I don’t get to brag about the good stuff often enough to satisfy me, but it also means fewer possible embarrassments for them later on. I hope!

This past week, my daughter needed me. Do you know I have a daughter? I do! She’s 15, she a great kid and the total package of smarts, looks and sarcasm. (You can listen to her one and only public appearance on the podcast here. Kid doesn’t like public speaking or attention. The family rebel!) Something came up, it took more time than she usually needs from us, and now everything is back to normal.

Sure, I’m a D-Mom, but I’m also just a regular mom. And sometimes diabetes can go into the background when more important stuff comes calling.

Lea in 2007(!)

Lea in 2007(!)

 

Learn more about Diabetes Blog Week here and go read some terrific posts!