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.

Thank you, Davidson Elementary School

That’s it. Fifth grade is over and this fall, Benny starts middle school.  It’s going a tough time for me because Davidson Elementary School is pretty incredible. It’s a big reason why we moved to our neighborhood 13 years ago. It’s a unique award-winning public school; a place where everyone knows its motto, “Discover, Explore, Succeed.”

When Benny started Kindergarten, he’d already been living with type 1 diabetes for almost 4 years. He knew how to check blood sugar, use his pump, to speak up when he felt high or low and to carry his kit everywhere he went. But boy, were we nervous. He was the only T1D kiddo in the school at the time. I wish I could go back and tell myself how great the next six years would be. How the staff would embrace us, how they’d work to make Benny feel accepted and loved and how, while diabetes management would never be perfect, he’d always be safe and well taken care of.

DES Tigers on the Prowl (Kindergarten)

I’ve never mentioned where Benny has gone to school – frankly, with my old job on the radio, I didn’t think it was a good idea to make it public. I stand by that decision, but it means I’ve never been able to publicly thank the staff at DES. Let’s fix that.

My sincere thanks and appreciation to:

Mrs. Hoyer, for making the transition to Kindergarten so much better than I had feared. When I found out you’d already taught students elsewhere with T1D, I couldn’t believe our good fortune. It was a great way to start off and it set the tone for the next six years.

Mrs. Harrigan, for speaking up and telling the school that she wanted more help, as first grade teachers at DES don’t usually have an assistant. This ultimately resulted in a “floater” who helped many kids with special needs. By the time 2nd grade started, there were 3 kids with T1D in this school and 4 the year after. Backup is good.

Kathe Hyman, who was that “floater” assistant. We had some great texts & calls. One of my favorites was when I was going on with her about B being “high and hungry” at school while I was checking out at Target. Got a few strange looks!

Mrs. Smith, for going above and beyond. Benny’s big request in second grade was to buy lunch at the school cafeteria, which made us all nervous. While our district provides carb counts, they don’t always match what’s on the menu that day. Jen would occasionally text us pictures of Benny’s lunch and ask for a carb count. We got so used to group texting that we sometimes went off the rails (more).

Mrs. McLennon for being tough on Benny academically but understanding of his medical issues. This was the year that his migraines, which started at the end of Kindergarten, got more frequent and intense. Thank you for trusting him. And for working miracles with his handwriting.

Mrs. Ellis & Mr. Verlin, for embracing our push for diabetes independence in 4th grade. Benny no longer had to check in with faculty unless he had an issue. You both also jumped to fully embrace the BEAM Team, our big school JDRF walk team. Thanks for letting Benny pie you in the face. Sorry about the mess.

Mr. Verlin (again) and Mrs. Berlin for an interesting 5th grade year. The Verlin-Berlin combo was perfect for Benny’s last year at DES. This year was a little tougher for diabetes management, and we appreciate you helping out with a few more reminders. Tough balance of staying on Benny without making him feel like we’re treating him like a little kid. You walked that line so well.

Huge thank you to our principal, Mr. Jarrett. Here’s a great example of how he leads the school. Last year he and some of the staff participated in the Ice Bucket Challenge. He selected Benny and another student with T1D to douse him. He never announced why, didn’t talk about their diabetes. He told me later he just knew they’d get why it was important.

IceBucketChallengePicOur assistant principal, Kimberly Green for supporting us through all the fund raising and assemblies for the BEAM Team. Sorry we do everything last minute!

Mr. Smith for making our 504 meetings easy and painless. Our feeling on testing is that elementary school was the warm up act for later, a chance to learn how to make standardized testing with T1D the best it could be for Benny. Thanks for walking me through the process and encouraging me to write in anything we thought Benny would need

I think we had a full time school nurse for one year at DES. But we’ve had amazing support. Gayle Castongia & Lisa Parham at the front office are incredible. They help take care of all the kids. Over the years, I’ve worked the most with Gayle, who so obviously cares about Benny. She listens to and trusts him, which is invaluable.

Karen Jackson, our first school nurse, who trained several staffers on using Benny’s Animas pump. She made me comfortable right from the beginning.

Nancy Mullins, our second school nurse. She was there when Benny started getting those migraines. So awful (by the way, he still gets them occasionally, but it’s not quite as frequent). Nancy is just wonderful – and she still comes to our spaghetti dinner every year!

We hit the T1D jackpot with our current nurse. I’ve actually known Julie Allred for years, she has type 1 herself (although she has had an islet cell transplant, so it’s a bit different). I’m fortunate to call her my friend and all the kids at school are lucky to have her. Are you sure you don’t want to transfer to middle school?!

Julie and Benny

Our amazing nurse Julie at last year’s JDRF Walk

Mr. Rabb is our phys ed teacher who keeps the kids active and running and even helped us out with The Big Blue Test at school last year (more).

In all our years at DES I went on one field trip – at Benny’s request. The school never made me feel obligated to go and I always felt safe sending Benny. He went on the 5th grade trip to DC without me or Slade (we had a schedule conflict, the original plan was for my husband to go). Everyone looked out for him. It was an incredible feeling of love and support. And it was a great way for Benny to show that he could be independent and responsible.

I will miss reading diabetes books to each class and giving my educational and kind of silly talks (more). I’ll miss the JDRF Kids Walks and the Tigers on the Prowl and Arts Fest and Book Fair, the talent show, the holiday show and so many other milestones that make elementary school unique. I’ll miss that everyone in that school knows who my child is.

This week is bittersweet. It’s hard to realize we’re moving on. I’ve been joking all year about holding him back and keeping B in DES another year. I know middle school will be fine. I know high school will be fine and that he’ll be fine growing up with diabetes. Part of the reason I know that, though, is because of our experience to this point.

Benny’s received a terrific K-5 education, but it’s one that’s included two different sets of curriculum. The regular grammar school stuff, along with a diabetes education as well. I’m so grateful that in both, he was allowed and encouraged to “Discover, Explore & Succeed.”

 

Celebrate One Year of Podcasting (Contest)!

One year ago I went ahead with an idea that had been kicking around in my head for a while.  I created Diabetes Connections, a weekly podcast. I hoped it would be a way to talk to interesting people in our community, share information & inspiration and use the skills from my broadcast career to reach people touched by diabetes who may feel isolated or alone.

It’s been amazing. If you listen, you know I love it. I gush about how fun it is at the end of just about every episode.  I can’t help it. It’s SO GREAT! I get to talk to people I admire, learn from experts and connect with people all over the country and even the world.

Win me!

Let’s celebrate!

I’m partnering with Pebble to give away two Pebble Time Smartwatches like the one pictured here. Everyone who enters will receive a link to 20% off Pebble products. Contest opens May 31st and closes June 12th. A valid email address is needed for the discount code; you can see the other rules & regs when you enter the contest.

(click the box at the bottom of this post to enter the contest)

In planning this celebration and contest, I hadn’t counted on something else. And it’s big. Diabetes Connections was nominated for The Podcast Awards! These awards are listener-nominated (so thank you to those who nominated me) and then a panel of judges narrows it down to the top ten in each category.  I found out last week that the show made it to the finals in Health. Wow! Now it’s time for listeners to vote for the top shows. Voting for The Podcast Awards opened on May 29th and closes on June 12th.

podcast awards vote now w-logoI need your vote, but I have mixed feelings about asking. First of all, it’s a pain to nag everyone to vote every day; you don’t want me junking up your timeline begging you to click & vote. BUT, as the only diabetes podcast in the running, I think it would be great to make it to the top spot. So I’ll be posting on social media, but let me know if I start to become a giant self-promotion machine. That’s not cool. But wow! Top ten for health in the country!? Yeah, I’m a little excited.

The awards voting and the contest are NOT tied together. No obligation to do one or the other, but I hope you take part in both. Many thanks for an incredible year, an amazing anniversary and here’s to lots more good stuff to come!

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DBlogWeek – I’m here!!

dblogweeksquareTechnical issues over here kept me from taking part in Diabetes Blog Week this year. Basically, the part on my WordPress site where I type the words disappeared. That’s not good.

While I missed sharing my thoughts on each topic (and you can see the list of everyone who did here), I did have some good stuff going on this week. Instead of trying to catch up, let’s just move forward. Okay? Okay.

I produced two Diabetes Connections podcast episodes this week.  Regularly scheduled Tuesday episode was with the anything-but ordinary Moira McCarthy Stanford. Honored by her JDRF chapter, she turned her dress into a statement of inclusion and celebration by having “names of T1D heroes I love” embroidered into the lining. I talked to Moira about the dress and to her daughters and her chapter about the impact she and her husband, Sean, have had on the diabetes community:

I also released a bonus episode on the issue of access for people with diabetes. In early May, United HealthCare announced that Medtronic would be its exclusive in-network provider of insulin pumps. Adults over the age of 18 who have UHC insurance will have a very difficult time getting any other brand of insulin pump covered. This set off lots of discussion within the diabetes community and prompted a round table episode with Christel Aprigliano of Diabetes Patient Advocacy Coalition (DPAC), Gary Scheiner, a diabetes educator with Integrated Diabetes Services, and Mike Hoskins, managing editor of DiabetesMine.

(You can watch the video of that episode here)
I also posted over on Animas about guilt. I recently developed and held a session for moms and their daughters with type 1 during a JDRF conference. I separated the two groups and had them answer the same fill in the blank questions. When we got back together, both groups were surprised; it was pretty emotional. This would have been my post for Tuesday’s “The Other Half” topic (mental health). I’m looking forward to doing this talk again for my chapter and, hopefully, for other groups that may want it.

DBlogWeek is always amazing and I can’t wait to go back and read the posts I’ve missed so far. Thank you again, Karen, for putting together such a terrific project. Of course, it’s also the inspiration for DPodcastWeek, which I will definitely be repeating (look for more info/signups in the fall).

Technical problems come and go, but the DOC is always there. Thanks for letting me sneak in under the wire!

My 1993 Oscar Interview with Leonardo DiCaprio

I tweeted this out the night of the Golden Globes.  Got a few questions, so I thought I’d explain a bit more. Here’s the story:

 

This_Boys_Life

 

This Boy’s Life is an adaptation of a memoir by author Tobias Wolff.  The movie feaures Robert De Niro, Ellen Barkin and DiCaprio, in one of his first big-screen roles. Wolff was teaching at Syracuse University when the movie came out, which is why one of the premieres was held at a Central New York movie theater.

As I remember, DiCaprio’s dad was the person who pointed him out to me. Could have been a PR flack. The event was over and I must have looked pretty pathetic with my bulky tape recorder slung over my shoulder, running late and trying desperately to give off the aura of  a professional reporter. I was a senior at SU, working weekends at the NewsTalk station in town.

 

I first looked through my stuff for this story after Titanic came out and I realized it might be nice to have. But no luck. WSYR certainly has no record of it (right, guys? we looked, didn’t we?). This was way before digital – I may have edited it on reel-to-reel – and we didn’t keep quite as much.

I hope DiCaprio wins the Oscar this weekend. I have a fun little story here and that’ll be a cherry on top. Maybe someone will ask him if he dreamed of winning way back when. And if they’re really good, when they put the story together, they’ll use that Lovitz drop.

 

 

 

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.

 

spare1

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.

DC_FinalLogo_GrayBkgrnd_Podcast

 

 

 

 

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)