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.

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!

Expect the Unexpected #DBlogWeek

Hey! It’s Diabetes Blog Week again! All week amazing people in the Diabetes Online Community will be sharing their thoughts on all sorts of cool topics. Karen Graffeo organizes this event every year – I spoke to her for the podcast last week. You can listen here (Karen’s interview starts at 39:00):

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Today’s topic: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens? 

After more than ten years of type 1 diabetes, I can say that the only thing you can be ready for IS the unexpected. Especially with kids. Site comes off during a birthday party? Low-carb drink turns out to be big time sugar? Too much sand in an inset to reinsert? Yup. It happens. While I never like that feeling of “fix it later,” we’ve learned that Benny is more resilient and diabetes is less of an emergency than I ever thought it would be during those first few scary months after diagnosis.

My husband likes to say the backup plan is more important than the actual plan. That came in handy when he was a TV newscast  director and we’ve found it to be true for diabetes in action!

As just one example, a while back we took the kids snow tubing. Slade and I grew up in New York, but our children are snow-deprived. The Charlotte area gets maybe 1-2 inches a year and rarely all at once. We’re more likely to get ice or slushy yuck. Once every couple of years, we get 3-4 inches all at once and the kids go bananas.

That Saturday, we bundled everyone up and headed off to the mountains. I packed two changes of clothes and extra socks and shoes for everyone. We don’t have actual winter clothes (no ski jackets or pants) and I assumed there’d be a lot of slush and wet and general yuck. I also threw in our diabetes bag.

Benny carries his meter and a juice box wherever he goes. For the last few years, he’s used a leather pouch. It’s really a golf tee/supply bag, but it’s a great fit and Benny doesn’t feel like he’s carrying a purse!  When we take a day trip or we’ll be out for a while, I throw a bigger diabetes bag in the car. This one can hold our pump supplies, extra strips, insulin, needles, etc.   In the summer, I put the insulin vial in a Frio. Somehow, it all fits.

A day outside in the mountains means stopping on the road for a big breakfast. Our kids love the Waffle House and I’ve resigned myself to eating there (I try not to watch the grease on the grill). After something smothered & covered, Slade and Benny figured out the carbs and Benny started to bolus. They both looked up at me with that “something’s wrong” look. “The pump says there’s only one unit left,” Slade said.

What? How is that possible? Why didn’t the pump alarm go off? Oh wait….

That’s when I remembered Benny waking up at 1am, stumbling into my room muttering, “My pump’s making noise.” The reminder alarm was going off, indicating the pump only had 10 units of insulin left. I confirmed the alarm (which turns it off) and told him we’d change the cartridge in the morning.  Of course, in the morning all I remembered was that I was pretty tired for some reason.

We paid the bill and walked to the car. I had the diabetes bag, so I knew we should be all set. But while I was reassuring Benny and Lea everything would be fine, I was trying to remember if I’d double checked the bag and if I could even remember the last time I’d reloaded everything. We were at least an hour from home and, I have to admit, I was nervous. But, it was all there.  One quick cartridge change in the car, giant breakfast bolus and on our way to tubing (which reminds me, I really should put some extra pump tubing in the bag).

I love it when a backup plan comes together.

(partially reprinted from a 2013 post)

 

#DPodcastWeek 2017

 

Here we go again!! So excited to kick off Diabetes Podcast Week, round two. Last year about a dozen shows teamed up to help the Spare a Rose, Save a Child campaign. We’re back with some cool new shows and one generous sponsor!

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Please check out the list of shows below. Links should take you right to their main page for easy listening/viewing. If you’re still not sure what a podcast is or how to find one, start here (my post: That’s Nice, What’s a Podcast).

The 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. Click the logo below to learn more and donate (pretty please)!

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I also want to send a big thank you to Wildtree’s Julie Calarco from North Carolina. Julie and her family have been fantastic supporters of research for type 1 diabetes since our very first JDRF walk. Their son, Nicholas, is growing up with Benny and is one of our biggest supporters and fund raisers (seriously, this kid is a powerhouse). Through Wildtree, Julie has donated $1000 to Spare a Rose (you read that right.. one thousand dollars)! I’ll be talking about that more on my podcast all month long, but please consider making a purchase from her website (click logo below). If you’ve never tried Wildtree or aren’t sure what you’d like, drop me a line. I’m a big fan, and you know I hate to cook. I recommend the Ranch Chicken Chili, the Garlic Grape Seed Oil and the Very Berry Cheesecake Blend. Click the logo to get started.

wildtree logo

Happy listening and thanks again for supporting these podcasts, our community and most of all, the kids around the world who will benefit from the Spare a Rose campaign.

#DPodcastWeek Participating Shows:

Beta Cell Podcast

Diabetes By The Numbers

Diabetes Connections

Diabetes Dominator

Diabetes Late Nite

Diabetes Power Show

Diabetic Danica

Everybody Talks

The Juicebox Podcast / Arden’s Day

Just Talking

Real Life Diabetes (Diabetes Daily Grind)

Diabetes Podcast Week 2017

Here we go again! The Second Diabetes Podcast Week is coming up: February 6-10, 2017.

dpodcastweeklogo2017As I explained last year, I’ve participated in and enjoyed Diabetes Blog Week for a long time. After I started my podcast, it seemed like a natural fit to create #DPodcastWeek.  Once again, we’re using our microphones to get some attention for a terrific charity, the Spare a Rose, Save a Child campaign.

During the week of February 6, 2017, 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.

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The 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.

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 20th.

It doesn’t matter what type of diabetes you talk about, whether you’ve just released your first 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, make sure you’re subscribed to your favorite diabetes podcasts and use the list below to sample a few more. 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 6, 2017.

Participating Podcasts/Video Blogs as of 1/20

Beta Cell Podcast

Diabetes By The Numbers

Diabetes Connections

Diabetes Dominator

Diabetes Late Nite

Diabetes Power Show

Diabetic Danica

Everybody Talks

The Juicebox Podcast / Arden’s Day

Just Talking

Real Life Diabetes (Diabetes Daily Grind)

Review & Win!

This week on Diabetes Connections I shared a big milestone: the show has received more than 50,000 downloads. In podcast-land this is a remarkable number to have reached after just over a year for a show like mine. I didn’t have a huge “brand” or powerhouse blog before starting the show. But I knew that people touched by diabetes are hungry for information and inspiration. And we’re kind of passionate about the topic.

Thank you so much for listening, for spreading the word and for letting me know what you want to hear. Many of you have emailed, recorded messages and even been on the show for my Community Connection. To say thank you, I’m giving away two $25 gift cards. Here’s how to enter:

Leave a review on iTunes or on the show homepage by September 27, 2016.  One iTunes reviewer will win a $25 card to iTunes, one homepage reviewer will win a $25 Amazon card. Please leave a genuine review! I’m picking the winner at random, not for who leaves the “best” review. But don’t troll me. If you’re reading this, I assume you’re a listener. Or at least a nice person.

To review on the homepage:

Go to Diabetes Connections. Click on any Episode Title (the blue text). That will open a new window. Scroll down under the audio tab and “Helpful Links” to see “Leave a Reply.” Write your review in the comment box. Click “Post Comment.” You can leave a comment/review for any episode to be eligible.

To review on iTunes

  1. Launch Apple’s Podcast app
  2. Tap the Search tab
  3. Enter “Diabetes Connections”
  4. Tap the blue Search key at the bottom right
  5. Tap the logo of the podcast
  6. Tap the Reviews tab
  7. Tap Write a Review at the bottom
  8. Enter your iTunes password to log in
  9. Tap the Stars to leave a rating
  10. Enter the title text and content to leave a review
  11. Tap Send

This article from iMore has more detailed info and a screen by screen walk through. iTunes is fussy.

You can enter in both locations but you can only win once.  If you have any questions, please reach out. Again, thank you so much for making this show what it is. Lots more good stuff to come!

 

 

Getting Diabetes Gear to Stick

This week on Diabetes Connections we gathered advice on getting diabetes gear like CGM sensors and insulin pump insets and pods to stick to skin.  I spoke with experts and “ordinary” people living with type 1. As I say in the episode, so much of this is trial and error; it’s very difficult to know what may work for you or your child until you try it.

This is by no means an exhaustive list. Please add what we missed in the comments or head over to the Facebook page and add your advice!

It’s worth noting that whatever product you use, most experts will tell you preparing the skin is the most important step.  Clean with soap and water or with alcohol wipes and be sure to let dry. Then you’re ready for the actual sticky stuff. We have also found it helpful to insert sensors or insets at least 4-5 hours before going in the water and the night before swimming (or earlier) works best for us.

This list is full of brand name and generics. I’ve linked to a website when the brand has one. You may also want to try Amazon or ask your medical supply provider. Just as everyone’s skin is different, so is our health insurance. It’s possible that what works for you may actually be covered. Stranger things have happened.

I expect to edit & add to this list in the weeks and months to come. Hope it helps!

Sticky Wipes

These make the skin a bit tacky in order to give the material you put on top a better hold.

Skin Tac wipe or liquid

IV Prep wipe

Mastisol liquid

Stoma Care wipe w/aloe

Hollister skin gel

ReliaMed wipe

Tapes/Patches

Tegaderm film dressing

Opsite Flexifix transparent film

Hypafix dressing tape

RockaDex Dexcom patches

GrifGrips adhesive patch

Waterproof Bandaid

Wraps/Bands

Kinesiology Tape (Includes brand names KT Tape, Rock Tape, Vara Tape)

Vet Wrap

SleekSleeves

Bands4Life

Athletic Sleeves

Rash Guard/Swim shirt (cut to fit)

Misc.

EK Tools Tag Punch Classic (Dexcom-sized hole punch)

Dexcom & Libre Rash (Public Facebook Group)