Stacey is the host of Diabetes Connections, a news podcast for people with type 1 diabetes. It’s a regular listen of mine, and Stacey has been a friend of mine for a long time, so I decided to invite her on the show today.
We’ll be talking about her podcast and we’ll also be talking about a new app that’ll be released in January called Club 1921. So settle in with a nice cup of sugar-free cocoa and give this week’s video a listen. Thanks for tuning in!
And if you want to learn more about Stacey’s podcast and other projects, you can reach her podcast at diabetes-connections.com.
- What is a podcast? Why did Stacey start Diabetes Connections?
- The importance of person-to-person communication for people with diabetes
- What is a “diaversary?”
- How Club 1921 will overcome the challenges of finding others with diabetes
- And a whole lot of banter!
Scott Johnson: Welcome to another episode of Live with Scott. Thanks so much for tuning in. My name is Scott. I’ve been living with diabetes since I was five years old and the diabetes social media space has been a big part of my well-being for a long time. In other words, you are as important to me as my insulin and Diet Coke and I’m so thankful for you.
As your host today, I’m happy to connect you with a dear friend of mine, Stacey Simms. She’s someone that I tune into on a regular basis myself. We’ll learn more about what that means, what she’s been working on, and what’s next on her agenda. While we get going, please share a quick hello in the comments and let me know where you’re watching from. That also lets me know that our broadcast is working fine for you. If we cover anything that resonates with you, please show us some love. I’d really appreciate that and if you know anyone that might find this helpful, please share this with them. Today’s episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support, and more. All for just $49 a month, learn more at mySugr.com/facebooklive.
I caught up with Stacey Simms on Monday of this week. Stacey’s the host of the award-winning podcast “Diabetes Connections”. Her son was diagnosed with type 1 just before he turned two in December of 2006, 12 years ago this week. Happy diaversery, Benny, and we’ll talk a little bit about what that means, a diaversery. Now, Stacey spent her career in broadcasting and has turned those skills into hosting and producing a weekly type 1 diabetes news show. This week marks 200 episodes. Wow. And she’s also got something new up her sleeve for the New Year, which you’ll hear about in just a moment. So let’s kick off the interview. Stacey. Happy Hanukkah to you and your family.
Stacey Simms: Oh my gosh. Thank you so much, Scott. It’s great to be here. I really appreciate that. Happy Hanukkah.
Scott Johnson: Yes, they will. I am thrilled to have you on the show. It’s really, really a pleasure. Um, we are, we have known each other for some time and I love that. I’m a fan of all of the work that you’re doing with Diabetes Connections and one of the things we’re going to talk about today is what is a podcast and how…
Stacey Simms: Before we even jump in, I just have to say we’re celebrating Hanukkah over here apparently with a giant lawnmower outside and my dog going crazy, so I apologize if you can hear it. Okay. We’ll carry on because I think he’s, um, he’s mowing my lawn. Like I’m sorry you were talking about podcasts, my favorite subject. I rudely interrupted.
Scott Johnson: Not at all. So there may be, we may have people watching and listening who’ve maybe heard about these podcasts things, don’t know much about them. Uh, talk to us about like, what is a podcast, how, how do they get involved, and why?
Stacey Simms: The way I like to define it is a radio show that is on demand. You can listen to a podcast pretty much anywhere these days on your computer, on your phone, on any kind of smart device. It’s called a podcast, and let’s really go way back here, because years ago, back in the olden days before smart devices, you used to have to download podcasts or these Internet radio or .MP3 files or whatever. You had to download them onto a device like an iPod, so radiocast, broadcast, podcast. That’s where it comes from. Now it’s so easy. I mean, you can tell your phone, “Hey Siri, find Diabetes Connections, podcast, Diabetes Connections.” It’ll pop right up on your phone. So not to do a commercial here, but um, there it is, there’s, you can see it. (Holds up smart device) It pops on, my lighting is terrible, but it pops up on your phone and then you hit subscribe and there it is. And there are lots of diabetes podcasts and there are lots of other podcasts to listen to. But that’s for Apple. If you have an Android you could probably do the same thing. I’m not really knowledgeable about the Android, but I love it because now it goes Bluetooth to my car. I’m in the middle of listening to something and that’s what I listen to really all the time are podcasts about Game of Thrones is my big passion. Game of Thrones podcasts, a lot of podcasts that teach podcasting, a lot of news podcasts and diabetes.
Scott Johnson: And you mentioned, I love that you talked about Diabetes Connections because that is where you play a big part of my diabetes daily life. Right? So talk a little bit about Diabetes Connections. This week marks your 200th episode, which is amazing. Congratulations. Tell us a little bit about Diabetes Connections and, and, um, why somebody might be interested in tuning into that and how you got started with that.
Stacey Simms: Sure. Um, well, Diabetes Connections is a weekly show. It focuses on type 1, and I like to say it’s the type 1 news show you’ve been waiting for because when I, um, I used to work in, in broadcasting, I was a radio local radio and TV host for a very long time and I listened to a lot of podcasts back in the day where you did have to get them on your iPod. And I listened to a lot of diabetes podcasts and my complaint, what I felt was missing for me. Was a news angle. There were these great personal stories which I, you know, you did a lot of them. They were so much fun to listen to. I heard you on quite a few, but there were missing the journalism, the news, the “why did this happen,” and not so much to grill a person about their own story, but have somebody on from a pump company and ask why did you decide to do that? How come you guys can’t do this or have somebody on from Lily or why is the price of insulin this way? Just different questions and things that I wasn’t hearing. So when I left my full-time job I decided that this was something to give a try. And I thought, well let’s see how it goes. And I’ve loved it.
I do it every week now and we have a lot of great stuff planned for 2019. I really feel I’ve gotten a handle on the production… I’m cracking up that I have a handle on the production. I’m glowing and I have a lawnmower outside, but we’re working on it. I used to have a technical producer and an engineer, and you know a sound guy and, you know, now it’s just me. But we do our best. Scott Johnson: Hair and makeup and lighting and…
Stacey Simms: And maybe put lipstick on. I’m in radio so I don’t have to do this nonsense!
Scott Johnson: I caught you off guard by making you turn the camera on today. So I really appreciate that.
Stacey Simms: I do the show every week and it gives me a way to ask the questions that I have about my family’s experience. And I’m kind of scratching that journalism itch.
Scott Johnson: And I imagine that it also has really brought the community aspect of your connection with diabetes to another level. And that brings me to another point, like what are your thoughts around the importance of community and diabetes both online through podcasting, but also in person, that the relationship with your podcast and Diabetes Connections has bridged that, that online-offline space quite uh, quite well. Right.
Stacey Simms: It really has, for me, what’s interesting, Scott, is that Diabetes Connections is actually, it predates the podcast for me. I did a presentation at JDRF summits and you know, moms groups and in different places called Diabetes Connections and it was all about using those online tools to find people in real life because the diabetes online community is incredible and it’s so helpful, but truly it can’t be the only resource. If you don’t have anybody in person in real life, it can be very difficult and I know there are people who are still very isolated who don’t have that. We were lucky enough to have the real life before the online and I think it changed my perspective. I think it influenced my son in ways that he doesn’t even realize. And so by doing that presentation, which was giving tips and advice on how to make those real-life connections, um, that’s when I decided to do the podcast.
Actually, if you go back and listen to the first few episodes, the entire show is about how to make real-life connections. I would, I would say to the guest, “Well, how did you do it? Who did you find or what did you do?” And then after about three episodes, we thought, this is hard, we can’t do this forever. This is not going to last 200 episodes. So I switched the focus to be more news and more interview and more open-ended. But that’s my passion. Um, you know, years and years ago, I remember Benny was little. (Crosstalk) make us both sound old, so I’ll back up. A few years back, you did a video, um, where you and your friend, Ninjabetic, right? And you guys were eating, but you were eating math, you were eating numbers and spitting out numbers. And it was silly and funny and I hadn’t ever seen anything like it. And I loved it. I showed it to Benny and he thought it was hysterical and it connected us in a way. I didn’t really think I’d meet you guys, but it was such a cool thing to be able to show him online. And it also enabled me when I met you to feel like I knew you and that was incredible, you know, so it was really, it was fun stuff. Things like that are cool.
Scott Johnson: Yeah, it’s, ah, I very much agree with you when you talk about that there’s no replacement for that in-person, those in-person connections. And um, I find that the online space and the Pearson support communities and diabetes, um, that online space just helps bridge those times between the in-person meetups and connections.
Stacey Simms: Well, a good example of that would be when I was researching pumps, Benny was diagnosed right before he turned two. And I knew pretty soon after that I wanted to get him on an insulin pump. I mean his basal rate turned out to be 0.025 or some nonsense, you know, you’re trying to measure in the syringes and you’re really guessing. So I knew a pump would help us be more exact and my endocrinologist was on board with it, but I didn’t really understand it. I kind of had this vague idea. We went to a hockey game here in the Charlotte area, put on by JDRF with tons of little kids and I was able to, I saw three-year-olds with a pump and I asked the dad, how does it work, what is it like? And he was like, come here Evan, show him your pump. And the kid like lifts up his shirt, you know, and Ben, he’s like, wow, that’s cool. It’s this big. And we were able to see how well it worked on a little kid but also what it looked like. And then I was able to go online and talk to different people about what do you think of it. But to see it, there’s no replacement for that.
Scott Johnson: Yeah, absolutely. Now speaking of Benny, this week marks a very special week for you guys, right?
Stacey Simms: Yeah. I can’t believe it. As I said, he was diagnosed right before he turned two in December of 2006. So this week marks 12 years with type 1 diabetes. He will soon be 14 and in fact, this day marks the day we left the hospital, so diagnosed three days ago and then they said, here you go, go home, good luck! And um, I, I told him that the day of his diagnosis isn’t something that we really celebrate. Do you celebrate your diaversary, or like did you do a big “to do” or?
Scott Johnson: I do, I kinda call it a celebration, but it’s more of a, um, a mental acknowledgment and a big pat on the back for like all I’ve learned and overcome and how much I’ve grown and just the growth in diabetes over the past year and saying that even over… So this year for me was 38 years of living with diabetes. And I continue to grow and learn and, and overcome new challenges and, and streamline other aspects of living with diabetes. So every year I give myself a big ol’ pat on the back and a mental, like, “you know what Scott, you, you kicked ass and you figured out new ways and better ways to do things.” So yes, I do, but I don’t throw myself a big party or anything like that. However, when I get, when I reached that 50-year mark, I think that’s party material right there.
Stacey Simms: That’s nice. Yeah, I like that idea. I’ll be there for that. That’s great.
Scott Johnson: Yeah, everybody’s invited. They’re all invited. It’s going to be a big, a big deal. Absolutely.
Stacey Simms: We’re going to go to mySugr headquarters.
Scott Johnson: Absolutely.
Stacey Simms: We, we never really celebrated because um, you know, the next year he was three. I mean he didn’t know anything. He didn’t know what was going on then, he didn’t really understand that it was a year. Also, this time of year, as you acknowledged, we’ve got Hanukkah, and there are so many parties going on, you’ve got Christmas coming up, of course in New Year’s. Benny’s birthdays in the month of December. So you know, by the time, and Thanksgiving’s just passed, by the time it gets here… I mean I hate to be dishonest about it, but it’s like, “what, I got to do something else?” And I think before social media, people may have done it but it wasn’t so widespread, you know, the idea of doing it. And I think that’s great if that’s how your family celebrates. Um, but usually 10 years we did go out to dinner and we all talked about it and I made a big toast and I got them silly gifts. I mean my daughter too, I have a daughter who’s three years older than Benny, but this year I just kinda said, “hey, remember blah blah blah blah?”And it, what was interesting, what really excited him about it was he loves his endocrinologist. We have to drive 45 minutes to get to him. And there’s one much closer. We’ve had the same endo since Benny was diagnosed. The day after we were admitted to the hospital, he got down on the floor with Benny and just changed our lives. And I said to him, you know, tomorrow on the day he was diagnosed, tomorrow’s gonna be 12 years since you met Dr. V. He was like, that’s cool. Like he liked that. That was a milestone for him. And uh, and then of course the story goes and it’ll be 12 years since I abandoned you in the hospital because the second day, right after we met the endo, I hightailed it out of there because my daughter and I had a date to go ice skating, and um, I had actually arranged an entire day, well it wasn’t a date, but I had arranged the date for my congregation to go ice skating in Charlotte and it was the first time we were doing that and it’s a big deal and I had set it up and I was like, I can’t miss this, but I wanted to stay in the hospital. My husband was like, he’s fine, go. And I’m so glad I did it because it showed my daughter and it showed all of us that life goes on. And then you talk about a community being there for you. It was, it was amazing. I cried a lot while I was on the ice. I’m a good ice skater though, so that’s okay.
Scott Johnson: I have a different story about ice skating. We’ll get to it another time.
Stacey Simms: But I always like to tell that story to parents because it’s a good reminder that you know, um, I joke about being the world’s worse diabetes mom abandoning my child in the hospital, but I think life goes on and of course if, if he was really in danger at that point, I would have stayed. But it was, it was a good thing for my family and um, and for my daughter and I think it set the tone.
Scott Johnson: Yeah, I think that’s a really great point. And, and, um, you know, I don’t think that there is any right way necessarily to deal with the diagnosis and um, life has to, you have to find a way for life to go on for the whole family unit somehow. And um, you know, Benny is doing great and you’re doing great.
Stacey Simms: It was funny, thank you. In the hospital, I mean I tell the whole story a couple of years ago on the podcast at 10 years we told the whole story and this week we, we talk about it a little bit more as well, but he really felt fine by the time it got to the hospital. I, but we have a stranger diagnosis story because he caught it pretty early. Um, and so by the time he got to the hospital, he wasn’t in DKA. He, he was feeling poorly and we figured it out. But he was there putting those electrodes all over you like they do when he was 27 pounds and 23 months old. And he’s like, pulling off, we don’t like the baby health, you know, he was just like, I don’t want this. And he really gave everybody a hard time because he wasn’t feeling sick. He was feeling pretty good. And so, you know, luckily, we caught it before it got too bad. But yeah, he was a piece of work in the hospital. He’s still a piece of work at 14. You’ve met him.
Scott Johnson: One of my favorite things is, is hanging out with Benny whenever he can make it down to the children with diabetes event down in Orlando, Florida, You’ll have to let them know that I’ve missed in the past few years and I hope that you can…
Stacey Simms: I will. It’s tough because you know, he goes to well as you know, he goes to a regular sleep away camp for a month and usually coincides with Friends for Life and that’s a topic that I could talk and I have talked quite a bit about, but that was a very difficult decision to send him to non-diabetes sleep away camp and I think this will be his seventh year and I think it has been one of the best things we have ever done for him. I’m not sure it’s the best thing I ever did for his blood sugar, but that’s, you know, I weigh, I weigh that out man.
Scott Johnson: It’s a total balance, right? Because diabetes is just one part of, of raising a healthy young, growing young man and there’s a lot more to life than diabetes and I credit my parents for helping me fit diabetes into every other part of my life. And it’s, it’s a balancing act all the way around.
Stacey Simms: Well, you make me feel better. I need a little therapy every once in a while, Scott. So thank you. I’ve always worked. It’s like, am I giving them too much rope? Is he going to be okay?
Scott Johnson: Well, Stacey, have a fun, exciting project. A new thing coming up. I would love for you to share a little bit about that with everyone watching today?
Stacey Simms: Oh sure. Um, I’m so excited about this. You know, as we mentioned, in-person stuff is so important, but one of the hardest things to do is to find something, right? I mean, your JDRF chapter may have a summit once every two years. You mentioned Friends for Life, which is fabulous, but it’s… the big one is in Orlando. Kind of tough to get to for some people and many people don’t realize that the Children with Diabetes group does different events during the year. They’re in Seattle in March. They’re in Falls Church near DC in the fall, so these events thought can be difficult to find. Even like a coffee meetup. I’m having a dinner next week with my diabetes moms in the Charlotte area. I guarantee you there are 10 people who would love to come who don’t know about it.
So the project that you’re talking about is called Club 1921. It’s a new app that I’m launching in January to help us find these events. You can list events, you can see events, and hopefully, it’ll be a clearinghouse because I don’t know about you, but you know when I first jumped in here I was like, where’s the community calendar? Where can I find all of the blogs and where all the blog posts about these events? And Christelle Liana who does such a great job with Deepak now, for a while maintained to a calendar of large conferences, but I was looking for like, where’s the southeast moms meetup? Where’s my d-buddy playground meetup because we had a group in Charlotte, but, and that’s how I met one of my best friends. Her son was diagnosed around the same time as Benny, little kids, and she made these d-buddy playground meetups. How do you find them?
So we are in testing or excuse me, I sound like an expert. We’re in Beta now… If you’d like to learn more, it’s kind of a blatant plug, but listen to the podcast, you know, diabetes-connections.com is really the best way to do that. I’m getting more information, but the launch is set for January and I’m just really excited about this because I feel like it’s a tool that’s kind of missing from our community. There are lots of places to chat. Um, I don’t know if you’ve ever worked in a parent group or maybe this happens in your groups as well? A lot of times someone will say let’s find each other, where are you from? And then you get, you get like 400 responses, but then nobody can find each other anyway.
So hopefully this’ll help. And we’ll have two tiers to make it easier in the app. One is for events which are for larger events and one is for hangouts, which would be for a coffee or a meetup. So you’ll, you’ll see as we go through that. But thank you. I’m excited about it. It’s been a lot of work and a lot of research and I can’t wait to get it out there.
Scott Johnson: I’m so excited for, you know, taking the brave step forward and organizing such a thing. Now for those who are, are a little unsure, like why, why Club 1921?
Stacey Simms: Well Club 1921 is, of course, the year that insulin was discovered. There were some different stories and different dates associated with it, but for the most part 1921 is when Banting and Best and other associates discovered that insulin could be used to treat people with diabetes and I’m using 1921 rather than a T1 or T1D or anything like that because this app is actually for people with all types of diabetes.
So it’s type 1, type 2, gestational… I’m putting a few others in, we’ll see who uses it. Um, it’s hard to imagine. I mean, when I did the research, there’s many more different types of diabetes, so this will hopefully bring more people out. I think, you know, people with type 2 need a lot more support than they are getting sometimes? So, you know, that’ll uh, that’ll hopefully help them as well. So yeah, that’s 1921. That’s why I hope that we’ll have some fun with that.
Scott Johnson: I think so. And please tell people again where they can find more information about you, your podcast, the upcoming release of the Club 1921.
Stacey Simms: Sure. The best place to go is diabetes-connections.com and that will actually not only lead you to the podcast, a little newsletter sign up will pop up. So don’t be afraid of that. I don’t spam you, but once a week you will get the podcast delivered to your email box along with lots of other pertinent information. And then on Facebook, of course, I’ll probably sneak into the comments here.
Scott Johnson: We’ll put it up on the, on the screen, and in the comments as well too.
Stacey Simms: I’d love for people to find Diabetes Connections on Facebook and we have a terrific Facebook group. Um, it’s Diabetes Connections, the group, and it’s for, you know, talking about the podcast, but also so people can meet each other within the group and we have people with type 2 and, and people with type 1. And I, I really, I enjoyed that Facebook group a lot. I also admin the Charlotte Parent Facebook group, which I started. I’m very strict in that group. I have lots of rules. I’m a little freer in the podcast room, but I’m like the police in the parent group. I don’t want any drama.
Scott Johnson: No drama as a good thing. I think.
Stacey Simms: We try. We try. Facebook and social media can be hard because people are only posting on their best and worst days. You know, you very rarely see a, “hey, everything was boring, it was a good diabetes day today” posts. You only see the worst and the best
Scott Johnson: And diabetes, you know, is a very emotionally connected thing to live with, so yeah…
Stacey Simms: I’ve noticed! And it’s not at all emotional when you have a two-year-old and then a 14-year-old. What a journey! Oh my goodness.
Scott Johnson: I can only imagine. Well, Stacey, this has been a lot of fun. Thank you so much for coming on the show. It has been a real pleasure and thank you also for being such a great friend to me and to the community at large. Thank you for all that you do for us.
Stacey Simms: Oh my gosh. Thank you so much. I feel like so much has been done for me and my family. I don’t know where I’d be without you guys, so I appreciate it so much and he says hi.
Scott Johnson: Likewise, and we’ll see everyone soon. Thanks for tuning in.
Alright, what a fun time catching up with Stacey again. Please head over to diabetes-connections.com to learn even more about what Stacey’s up to, to subscribe to the Diabetes Connection Podcast and newsletter. And as a special thanks to all of you watching, I have two special mySugr tote bags with some goodies inside. We’ve got these awesome, fancy, mySugr Pop Sockets. So cool. And then a couple of fun mySugr stickers and a bigger, like, a bumper sticker. And then a nice thank you card. So once again, today’s episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support, and more. All for just $49 per month. Learn more at mySugr.com/facebooklive.
Be sure to tune in next week where I’ll connect with Karen from Diabetes Sisters. Karen’s been living with type 1 since 1979 in 2008. She found the diabetes online community and started her blog Bitter Sweet. She became hooked on diabetes support and advocacy both online and off, and over the years, has volunteered and consulted in the diabetes world. In the fall of 2017, she landed her dream job as a program manager at DiabetesSisters, and she’s going to tell us all about the great things happening there. You won’t want to miss it. Thanks again for joining us today. Please like this video and share it with your friends and have another amazing day. I’ll see you next week.