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 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)

 

 

 

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!