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.

Diabetes Podcast Week – It’s Here!


15-MS-071DiabetesWeekLogo_r1Here we go! For the next week, these podcast hosts will be using their shows to educate and entertain about diabetes as usual, while also helping the Spare a Rose campaign.

As the hosts share their original release date and show content, I’ll pass it along, so please check back. Many thanks for your support!

#DPodcastWeek:

(participating shows in alphabetical order)

Adventure RX (Living Vertical), Steve Richert

Diabetes By The Numbers, Stephen Shaul, Feb 2, Merle Gleeson talks about living with T1D for 52 years. She’s the founder & CEO of the Type 1 Diabetes Lounge in Chicago.

Diabetes Connections, Stacey Simms: Feb 2, Advocates Kerri Sparling, Scott Johnson & Bennet Dunlap explain Spare a Rose and (in a complete rip off of NPR’s Wait Wait… Don’t Tell Me) play “diabetes bluff the listener.”

Diabetes Dominator, Daniele Hargenrader: Feb 3, Explaining Spare a Rose, Save a Child (video)

Diabetes Late Nite (Divabetic), Max Szadek: Live show! Feb 2, 6-7pm, musical inspiration from Tamar Braxton. Interviews games and prizes! Plus finding sexy shoes that aren’t bad for your feet.  Prize giveaways courtesy of Earth Brand Shoes

Diabetes Out Loud (formerly DSMA Rents) Lorraine Sisto, Bennet Dunlap: Live show! Feb 1, Talking to Christopher Snider about creating, “My Diabetes Secret.”

Diabetes Power Show, Charlie Cherry, Chris Moore, Theresa Moore and Chris Daniel

Diabetes Unscripted, Katie Coleman &  Kory Seder: Feb 3, Answering listeners’ fitness questions, including long distance vs sprint training & carb cycling and meal timing.

Everybody Talks (Diabetes Hands Foundation), Corinna Cornejo: Feb 5, Advocate Scott Johnson talks about Spare a Rose, Save a Child.

Juicebox Podcast (Arden’s Day), Scott Benner

Just Talking, Christopher Snider, Feb 2, Advocate Kerri Sparling talks  T-rex Tuesdays, being a parent to a child in kindergarten, artificial pancreas advancements, switching insulin pumps, and of course, Spare a Rose.

Real Life Diabetes (Diabetes Daily Grind), Amber Clour & Ryan Fightmaster: Feb 5, Asking the questions we’ve always wanted to ask to people who actually know the answers. Live from the Connect + Cure Gala.

 

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Thanks to all of the podcasters for sharing information on their shows and websites about Spare a Rose, a campaign to bring diabetes supplies and support to children in the developing world.  Please click on the link or the above image and learn how you can help.

Diabetes Podcast Week – Who’s In?

15-MS-071DiabetesWeekLogo_r1Getting closer to Diabetes Podcast week, kicking off February 1, 2016. I’m excited to let you know who’s taking part!

As I explained a few weeks ago, this first effort will bring together D-podcasters to help put the spotlight on a terrific charity.  We’re teaming up with the Partnership for Diabetes Change (P4DC), to spread the word about the Spare a Rose, Save a Child campaign.

Below is the list of podcasters who are on board as of today. Please take a minute to check out their shows. The links provided are to their websites, but you can also search them up on your podcast platform of choice (iTunes, Stitcher, etc).

Do you know of anybody we missed? Tell them to sign up! Shows that focus on any type of diabetes are welcome.

Quick note: there are one or two hosts included here with production schedules that don’t have them coming out with a new episode the week of February 1st. However, they are still supporting #DPodcastWeek and Spare a Rose through social media and on their websites.

#DPodcastWeek: The List

(in alphabetical order)

Adventure RX (Living Vertical), Steve Richert

Diabetes By The Numbers, Stephen Shaul

Diabetes Connections, Stacey Simms

Diabetes Dominator, Daniele Hargenrader

Diabetes Late Night (Divabetic), Max Szadek

Diabetes Power Show, Charlie Cherry, Chris Moore, Theresa Moore and Chris Daniel

Diabetes Unscripted, Katie Coleman &  Kory Seder

DSMA Rents (Diabetes Community Advocacy Foundation), Lorraine Sisto, Bennet Dunlap

Everybody Talks (Diabetes Hands Foundation), Corinna Cornejo

Juicebox Podcast (Arden’s Day), Scott Benner

Just Talking, Christopher Snider

Real Life Diabetes (Diabetes Daily Grind), Amber Clour & Ryan Fightmaster

Did I miss you? Still want to sign up? Reach out to me at dpodcastweek@gmail.com (or through the contact info here on the blog)

Thanks to my friends at Romanelli Communications for donating the logo design. They’re nice people. You should look them up.

Diabetes Podcast Week

This summer, Diabetes Mine ran a story about the resurgence of diabetes podcasts. I had just launched Diabetes Connections and I was excited to read about the others in our community. As I read, I thought, wouldn’t it be cool to do something together?

dpodcastweekstockI always enjoy Diabetes Blog Week, so it seemed like a natural fit to create Diabetes Podcast Week. This first effort will help put the spotlight on a terrific charity.  I’m teaming up with the Partnership for Diabetes Change (P4DC), to spread the word about the Spare a Rose, Save a Child campaign. Let’s use the power of podcasting to do some good.

During the week of February 1, 2016, podcasters who sign up will include information about Spare a Rose in their shows and on their websites. They’ll ask listeners to learn more and to consider making a donation. All the episodes won’t be all about Spare a Rose; I’m encouraging the hosts to do their usual, great shows, just with this specific information included.

spare2The idea behind Spare a Rose, Save a Child 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.

“The most impressive thing I’ve learned from my involvement in the Spare a Rose campaign is the giving power of the community,” says Scott Johnson, a founding member of P4DC.  “Everyone can identify with the emotional and financial needs of life with diabetes, and Spare a Rose offers an easy way for everyone to help.”

How can you help? If you’re a podcaster, please sign up by emailing me at DPodcastWeek@gmail.com. I’ll send you more details and make sure we’re all on the same page. Deadline to be part of the official list is January 12th. It doesn’t matter what type of diabetes you talk about, whether you’ve just released your first 5 minute recording or if you’re on episode 372 and top of the charts on iTunes. If you’re making internet radio, you focus on diabetes and you want to do good, please join us.

If you’re a listener, stand by. More information will be released once we have the podcasters signed up.

If you’re reading this and thinking, “That’s nice, what’s a podcast?” click here for some help.

That’s it! Stay tuned for more on #DPodcastWeek, coming February 1, 2016.

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Nine Years #Dfriends

The first weekend of December, 2006. The date was December 2, but I always have to look that up. I just remember that the phone call came on a Saturday morning. Benny was feeling better than he’d been in a few days, so when the woman said, “pack a bag and get to the hospital,” I asked her if it was really that urgent. Of course it was, so off we went.

Benny2006 2That was nine years ago. Benny was almost two, he is almost 11 now. So much has changed, but he’s still the same sweet, silly kid who will do anything for a laugh.

 

Diabetes isn’t really easier now. Perhaps it’s more routine, but every age brings new challenges. Finger sticks, pump inset changes and CGM insertions still hurt. Benny had his yearly blood draw this week and he came up with a nice idea. We’re calling it #Dfriends.

 

#Dfriends2

 

Does your child have a stuffed animal that gives them comfort? Diabetes is a lot of poking and prodding and crud. Benny has always had a “friend” to help. When he was very little it was Elmo. He used to “test” Elmo, pretend to give him juice, give him a new inset and hug him afterwards. These days, Benny likes a white tiger. We snuck Tigey into the blood draw room in my giant purse. Benny says he knows a lot of almost 11-year-old boys might be embarrassed to admit they need this kind of help but, “I don’t care. It helps me feel okay. And if helps another kid feel okay, they should do it.”

Benny wants to see your #Dfriends. We just came up with this. There’s no prize, it’s nothing official, but I think it’ll be fun. Post a picture on Instagram, Facebook, Twitter, wherever.

We’ll start (I’m StaceySimms on Instagram, this site has links to my other social media). Show us the stuffed animal or pet that your child likes to hold when something hurts or diabetes gets them down. Include your child in the picture if he or she says it’s okay (both of my kids are SO over being on mom’s social media feed).

Let’s see your #Dfriends

#Dfriends

 

 

 

Win Jerry the Bear!

This week on Diabetes Connections I’m talking to the inventors of Jerry the Bear, an amazing teaching toy that helps kids with type 1 diabetes or food allergies learn through play.  I’m excited to announce I’m giving away one Jerry the Bear!

Listen to the podcast to find out how Sproutel’s founders Hannah Chung and Aaron Horowitz continue to improve their award-winning and adorable product. They’ve even been honored by the White House. Then enter to win!

jerrysquare crop


Click here to enter the contest. Just fill out the form!

Contest begins 11/24/2015 and closes 12/8/2015. Entries accepted via this form. Shipping outside the U.S. voids the repair warranty on Jerry the Bear (please be aware if you enter and do not live in the USA). Winner chosen at random from all entries and may choose either expansion pack (type 1 diabetes or food allergies).  Jerry will ship in the summer of 2016 (this is the earliest available shipping date). Click here & scroll down for FAQ about this latest version of Jerry the Bear featured in our contest.

The Diabetes-Free Day

animaspingLike most parents of kids with diabetes, I worry about burnout. That’s why we tried something I call The Diabetes-Free Day.

New column up over at Animas: 

My friends who’ve been through the teen years talk about burnout and warn me about expecting him to do too much at a young age. We help a lot at home with site changes and BG checks when he wants. At the same time, I think he’d be insulted if I told him he couldn’t or shouldn’t take care of himself at school or a when he’s away from home…

When Benny came home (from non-d sleep-away camp) this year, I had a funny idea. He’d done an amazing job and only had a couple of bad lows and highs; overall he’d kept his blood sugar in a really good range. But I knew it was a lot of work and a lot of brain power. So I made him an offer, “How about a diabetes-free day?” I asked.

(click here to keep reading)

Hey, local media!

I’m a little frustrated with how diabetes awareness month is being covered here in Charlotte. I know, I know. There’s a month for everything, no one has a full time health reporter anymore and I can just hear an EP saying, “We need to deliver real news that’s compelling to our audience.”

Lucky you, I’m here to help! I’ve worked in TV & radio in this town for more than 15 years and I know this audience. This town cares. Wants to help. Wants to learn. So, step it up, Charlotte media. Not sure how? Here you go:

Cover Reegan’s Rule. A first of its kind legislation in the nation. Passed in September and is now being considered by other states. This will affect every child born in North Carolina. Legit hard news out of the NC Leg. and you haven’t touched it. Now’s still a good time.

Profile the newly diagnosed 11-year-old, playing in her first soccer game since she left the hospital. Last week, she was worried about scoring. Now, she has to balance what she eats, how much insulin she takes and her activity. Her mom and dad cheer on the sideline, gripping insulin pens and glucose tabs, trying not to show her that they are scared out of their minds.

Talk to the young man who told his doctor that he wanted to be a pediatric endocrinologist when he grew up, “just like you.” His doctor said, “Sure, and if you do it, I’ll hire you.” They now work together, seeing the hundreds of kids in our area who need their help.

Learn about the man who lost his mother to diabetes last year and is now dedicated to raising money to send kids to life-changing diabetes camps. He’s got a great Panthers-themed fundraiser this weekend.

Introduce the teenager who is starting a mentoring program. He wants young kids with type 1 to see that it’s okay and even cool to wear the tech that keeps them healthy (like insulin pumps and CGMs) and he’s working to pair up high school students with younger kids.

Need more? Charlotte is full of amazing people with diabetes.

We have an Ironman triathlete, an woman with T1D who is a successful islet-cell transplant recipient (part of a clinical trial, she no longer needs to take insulin), an accomplished drummer and musician who says his T1D diagnosis saved his life as he is now a recovering alcoholic. There are ordinary kids like my son who just wants to play Minecraft and football but has pricked his finger more than 25-thousand times since he was diagnosed almost nine years ago. There are ordinary adults living with type 1 (that’s why they don’t call it “Juvenile” anymore).

Shine a warm light on the people here with type 2 diabetes, keeping silent this month because of the shame and blame. The jokes about #diabetes on social media and the accusations they brought it on themselves. Consider explaining what gestational diabetes is (and why we have to drink that gross orange soda while we’re pregnant).

Diabetes isn’t a rare illness. But it can be invisible. It can encourage isolation. We need to talk about it more. So c’mon, show us you’re truly On Your Side, The News Leader, & Looking Out For You

And if you can’t make a compelling story out of any of this, what are you doing in media?

pbn2

 

 

That’s nice. What is a podcast?

DC_FinalLogo_GrayBkgrnd_PodcastI started the Diabetes Connections podcast this past June and I’m having a blast. Talking to interesting people, learning more about a topic I have great passion for and getting back behind the microphone. What’s not to like?

However, quite a few friends and even several guests have said to me, “Wow, you’ve started a podcast?! That’s so cool. What exactly is that??”

A podcast is basically a radio show that you listen to whenever you want on whatever device you want. They first got popular back when the iPod was introduced. People realized they could create their own shows on computers and other people could find them on the internet and upload them to this newfangled version of the Walkman. A lot has changed, they’re much easier to put onto your mobile device for one thing, but the name stuck. iPod. Podcast.

Most regular radio shows have a podcast version as well. Almost always, it’s what they’ve already aired, just available when you want it, on demand. The vast majority of podcasts, though, are created by people who don’t work for a radio station. Some have millions of listeners and are professional operations. Others get 10 downloads and sound like they’re produced in their mother’s basements.  (More cool info from Pew research here)

podcast app graphicIt’s pretty easy to listen. If you have an iPhone or iPad, the native podcast app looks like this.  Just tap it and enter “Diabetes Connections” in the search. You can also ask Siri to find it for you. (“Siri, find Diabetes Connections Podcast”) Once you find it, you can subscribe so you never miss an episode, or just pick whatever episode you find interesting at that moment. Or, just click here for my iTunes link.

stitcherAndroid users have lots of options, too. Pocket Casts is usually the top-rated app, but it’s not free. You can check out Stitcher Radio for Podcasts, which is. I’m an Apple person, so if you know of a great Android podcast app, please leave it in the comments! There really are dozens of podcast apps; my show should be listed just about everywhere. Here’s a link to my show on Stitcher.

Since most new cars now come equipped with Bluetooth, it’s easy to listen while you drive. Just play the show from the phone and use the Bluetooth to connect with your car’s sound system. You can also listen from your laptop, most podcasts have a website. Here’s mine (so convenient, right?!).

About one third of Americans listened to a podcast last year, so there are still a lot of you who’ve haven’t. I hope this helps you take the plunge, whether you listen to my show or any of the tens of thousands of podcasts being produced right now. For more info, this is a great explainer from the Wall Street Journal, complete with apps they recommend and podcasts they love.

If you like mine, please share it with anyone you know who’s touched by diabetes. I love creating this show. I hope you love listening to it.

Grateful? Yes. Quiet? No way.

tslim_G4_with_TransmitterLast week, Tandem announced that the FDA approved their new T-Slim G4 Combo, integrating the pump with the Dexcom G4 CGM transmitter. Along with the Animas Vibe, that gives us two G4 integrated pumps, systems where you can see blood sugar readings on the pump screens. That’s great news.

The bad news (to quote this article from Diabetesmine):

Tandem’s new combo device is nearly obsolete on arrival given that last Fall, Dexcom rolled out an advanced algorithm that’s more accurate than its original G4 and that new algorithm is not included here. Moreover, Dexcom’s G5 direct-to-smartphone sensor was also just approved by FDA and will be available in the coming weeks — putting Tandem another square behind the latest tech. 

animas_vibe_features(The Animas Vibe is also G4 integrated and not compatible with the new G5. I have an agreement with Animas.)

This mixed news touched off an interesting social media conversation about appreciating what we have in terms of diabetes technology. Many people expressed excitement about how fast new gear is getting FDA-approval and coming to market.  Others – like me – expressed frustration.

A good example of the first way of thinking is this this well-written and thoughtful post  by Kari W. A few tweets throughout the day from others asked the DOC to just be thankful for what we have, that we’re “beyond blessed” with d-tech and what else could we possibly want?

The second is illustrated by D-Dad Greg Dooley writing that his 5 year old daughter’s Omnipod system failed three times. Three pod failures and a belly-up PDM.  A friend posting on Facebook that her son just switched to a T-Slim and one of the first comments is a warning to be careful. “The screen is delicate. (My daughter’s) dropped it and cracked it twice.” Our Animas Ping system hasn’t changed since 2008, but we still think it’s the best option for my son and stayed with it this summer when our four-year pump choice window opened up (don’t even get me started on that).

When I posted these examples, and that I felt d-tech lags behind other sectors, I was told the tech has come a “tremendously long way in ten years” and “what more did I want out of a pump?”

Really? Glad you asked!

I want an agnostic system where my pump talks to my CGM and my phone. I want to be able to program a temp basal in advance (say, for 5pm baseball practice tomorrow night) for any amount of time. I want a meter remote that can be used without cancelling pump communication with a CGM or a phone. I want insets and CGM sensors that stick better, with less irritation, that last longer and hurt less. I want more choices of what insulin can be used in what pump and a system that’s less susceptible to pressure and temperature changes or static. I’d love to change my alarm chimes & volume as easily as I change ring tones on my phone. Better brightness adjustment on meters would be good too. How about more accurate meters while we’re at it? To say nothing of the bionic or artificial pancreas (and of course we all want a cure, but that’s a different post…).

I don’t understand why I have to be just be grateful for the diabetes technology we have.  I’m inspired by We Are Not Waiting and CGM in the Cloud even though I do not remote monitor very often (and I’ve never used Nightscout). Without the push from these groups, I truly believe Dexcom would have left the Share cradle on the market a lot longer, and we wouldn’t be talking about the FDA approving the G5 this quickly. But, the moves ahead in CGM technology lead us to wonder why the pumps don’t seem to keep up speed. I know they’re different companies, I know it’s propriety, I know we’re told it’s complicated and medical, but it’s 2015. This thing should talk to that thing (hat tip, James Wedding of the Nightscout Foundation).

Of course, of course, of course, I’m grateful that we have access to insulin let alone all the higher tech gear I’ve talked about. I’m thrilled and thankful that we aren’t sharpening or boiling needles at home. But is this our standard? Be happy it’s not as bad as it was? Unless we push, things will not change. Unless we demand better, we won’t get it. Our kids and our community won’t thank us for not speaking up. They’ll be glad we did.

#DOCburnout2015 – Feel the Burn

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Interesting blog prompt today from Diabetes Daily. They want our stories about social media burnout.

At this moment, I’m not really feeling the burn on social media, probably because I’m  starting to use it in a whole different way. I started my podcast, Diabetes Connections, a few weeks ago; I have additional Facebook and Twitter accounts to manage. The beginnings of things are always shiny and new, so it’s fun right now. I’m even using Facebook ads for the first time this week. It’s got me firing some cylinders I haven’t used before.

However, in my personal accounts, over the past year I’ve disengaged from a bunch of diabetes parenting Facebook groups.  I post and comment a lot less.  I love the support that social media brings. It’s helped me find my place in this community and I like to think it’s helping me help my son become more independent and confident in his diabetes management. But I also feel like there’s a lot of judging and comparing going on.

Parenting with diabetes is difficult, in part, because parenting is difficult. We all do this in our own way. What works for me may horrify you. Like those crazy energetic moms on Pinterest taking hours to create amazing school lunches. I make my kids’ lunches and they will never look like that. While DOC conversations are less about cutting sandwiches into fancy shapes, there still seems to be a competition over who can out-parent. Night checks, remote monitoring, what pump to use, what to do at school. These are all important topics for parents of kids with diabetes, but sometimes talking about them feels like wading into a minefield.

I’ve gotten a little fed up with the judgement and the “my way or the highway” crowd and this feeling that I’m not doing a good enough job. To that end, I’ve removed myself from a lot of groups and I avoid certain topics on my blog. I’m still happy to chime in with advice if someone asks, as long as they understand that works for me may not be best for them.

Honestly, I think so much of this comes from fear. It’s hard enough to think we might not measure up as parents – thinking we may not measure up as diabetes parents is terrifying, because we think our kids will pay the price. But we’re all just doing the best we can. We all love our kids and we all want what’s best for them.

For now, I’m going to keep to the few groups I’m in and concentrate on my real-life connections. When the social media burn gets to be a bit too much, a good in-person conversation (or a podcast interview!) brings me back to feeling connected, valued and heard. Things that can get easily lost in the noise online.