#763 Bold Beginnings: Community

September 29, 2022Scott Benner

Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to episode 763 of the Juicebox Podcast. This episode is another in the bold beginnings series

hopefully, you've been listening to the bold beginning series, and you're all caught up and ready to take on the latest episode, community. If you haven't heard the others, you should check them out. You can find them in your podcast player by typing in Juicebox Podcast bold beginnings. Or you can find them at juicebox podcast.com. They're in your podcast player you understand. But if you're looking for a list, I'm saying juicebox podcast.com. And you'll also be able to find a list in the private Facebook group for the podcast Juicebox Podcast type one diabetes. If you'd like to hire Jenny Smith, you can do that she works at integrated diabetes.com Head over there and you'll be able to figure it out. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. Or becoming bold with insulin. No ads in this one, just gonna have a little announcement here after the music and then straight through me and Jenny chiton in chat

I'm just here to ask you for your support. And there's not much you need to do to give it follow the podcast or subscribe to the podcast in an audio app, like Amazon music, Apple podcasts, Spotify, something like that. That's one thing you can do. You could tell someone else about the podcast, that's a big deal, actually. Like you're talking to a friend like I got diabetes like you, you should try Juicebox Podcast. Or maybe you tell your doctor about it. Your doctors like to be your doctor in this scenario. Oh my god, how did you get your agency this good? You say I'll be you know, I listen to the Juicebox Podcast, you should check it out Juicebox Podcast and you start telling them that like in your you plot your app, show them on your phone, or tell him about juicebox podcast.com. You know, I'm saying sure the show is pretty much it actually. So I want to say to you, there's no ads today. So enjoy the podcast. The only ad is for for the show, support it, download it, subscribe to it, tell a friend about it followed on Instagram, check out the private Facebook group. That's pretty much it. I appreciate your time. Enjoy the episode. So Jenny, we are doing well with our bull beginning series, a few more episodes left to record. I am beginning as I told you earlier, but more and more getting nice feedback from people newly diagnosed people who have found it and are joining it finding it to be helpful. Yay. It's it's really been a fulfilling thing. Which you know, if you all know me, like I don't say things like I feel. But I really do. And so interestingly enough, I got a note yesterday from a guy, a young man's probably 20 to 23 years old just graduated from college. And it it's going to fit in nicely with the the topic we're doing today. So today's topic is community. And I'm not the type of person who prior to diabetes would have said to you, you know how you handle problems in your life, you surround yourself with people who understand, like I did not grow up in it that would have seemed granola and crunchy to me prior to all this, if that makes sense. Now I am a firm believer in it. I am a firm believer in the idea that people who understand your situation are in a unique situation themselves, and they're able to offer you support. Even if it's not directly that you can't get anywhere else. I've never right, the experience of seeing a person feel supported with just the knowledge that someone else understands. And they don't even know each other is fascinating. I never thought I would see that. But there are the vast majority of people who listen to this podcast or go on my Facebook group or in another community never say a word. They don't type a message. They don't send me a note to tell me they enjoy the podcast. They're just there. Right? Yeah. And there's something really magical about it.

Jennifer Smith, CDE 5:00
There is it's a feeling of, as you said, I mean, a lot of people I think, are for one example Facebook, they're lurkers, right? They sort of just are there. And what they get out of it is either information or against a sense of like belonging to a group that gets it as well in whatever realm of, you know, chronic condition or lifestyle or whatever you might have. I mean, there are lots and lots of Facebook groups for things. Sure. But diabetes, being such a it's, it's something always that there. And I think you can find posts all the time, something new, this is happening, I had this occur, and there's always somebody who's going to chime in and say, I've had that happen, too. I kind of feel it, I get it.

Scott Benner 5:53
Well, the people who listen to the podcast teach me what the podcast is, which is a weird thing, because I'm the one that makes it, but they're the one who tells me, they're the ones who tell me what it is to them, which is okay. It's an interesting, it's an odd dichotomy, right? Because I think I'm doing one thing, like, if you would have asked me five years ago, and even maybe three years ago, I would have told you the podcast is about managing insulin. That's it. That's how I saw it. And then I, I one day had this, this young girl on in her mid 20s. And she's like, you know, I started listening to the podcast, and my A onesies came down. And I thought, probably a little like, smugly. I was like, oh, yeah, cuz you heard how I talked about insulin fixture wholesaling, right? She does now, I always knew that stuff. She said, I just never did it. Yeah. And I was like, Well, what made you do it? And she goes, I don't know. She's like, Just hearing that other people were doing it. And that, I just thought, well, I probably could, too, you know, and then she just, she just did it. So I knew I didn't know that, like her conversation. And other conversations and notes taught me that it's, it's almost strange, because I don't have it in my life the same way that other people do, because I'm the one making it. So like, I can't, I can't be involved in it the same way. I don't know how that it's a strange position to be in, like my facebook group has at this point. By the time this comes out, there'll be 28,000 people in there. And I see the background metrics between 70 and 110 new posts a day. 24 of the 28,000 people are active in it, which is crazy, because Facebook groups are always like, well, we have 100,000 followers, when you look there's two posts every week, you know, like, right, they that

Jennifer Smith, CDE 7:46
by the same people all the time. Yes.

Scott Benner 7:49
each other, we think they're talking 200,000 people. But what's really amazing about that is, is that people will ask a question, and then you get a wide variety of answers by rack but not screwball answers. There's something about people who listen to the podcast, and then go online and participate they have they have enough information, where they're not saying things that you're like, wow, that's doesn't make any sense it all

Jennifer Smith, CDE 8:18
right. It's not like crackerjack information. And if Yeah, if they're

Scott Benner 8:23
a little off, there's such a great vibe in there, that other people will come in and be like, Hey, I see what you said. But have you considered this and it's all taken well, and I'm, I'm stunned every time I see it, because Facebook is, you know, colloquially it's a place where people argue, but yes, does not happen in this space. Really, really?

Jennifer Smith, CDE 8:43
Yeah, I have not I mean, with you know, all the lurking that I myself do. I don't I don't off in fact, I don't think I've ever seen in your group negativity in a way that's, you know, cutting to other people who've made comments or have offered up this is what's happening, you know, whatever. And I've seen that in other groups. Yeah, of course is unfortunate.

Scott Benner 9:09
So the way I do it is probably it's probably opposite of how people think about it, but I don't over moderate the thing. Right there adults get any mean like if they can't figure it out? How am I going to figure it out? Little things you know, there's obviously there's the rules in the Facebook group are kind of funny, if you go read them. I think it's, you know, like the basically it's the it's the equivalent of like, don't be a dick bait, you know, basically, you know, don't don't talk about politics, you know, that kind of stuff, like just just talk about diabetes with people and and it works and it doesn't just, I at one point thought it was going to be like, in addition to the podcast, and then I started realizing that the Facebook group had such a good it had such good word of mouth online, that people were ending up in the Facebook group, have no idea what the podcast is, like, forget that they haven't heard it. They don't know what it is. They just they were told, like, click on this link, and these people will help you with your diabetes. And you see them come in and ask, they'll ask a question. And other person will say, oh, you should try episode, this podcast. And they'll say what podcast, right? And that's amazing, because now there's these, there's these two entities, and they somehow support each other, but can operate

Jennifer Smith, CDE 10:33
separately independently. Really, really interesting.

Scott Benner 10:37
So some feedback from people, if you know, other type ones, reach out to them, if you don't know them, find a community and build a support system. As an adult diagnosed with type one diabetes, I didn't know anything about diabetes, and I had a lot of misconceptions, I felt very alone, finding support groups like Facebook helped READING A reading helped a lot getting Dexcom helped. I found out about them through Facebook groups, I would have loved to have been assigned and experienced type one to talk things through. So this person is a great idea. Yes, right. Yeah,

Jennifer Smith, CDE 11:13
that's I mean, it's there. I know that there are diabetes, like mentors, especially like I think JDRF used to have, they don't still have it, they used to have like a mentoring kind of program. I know that the college diabetes network has some nice mentors, especially within the college chapters, you know, but that is from a boil down, like, Hey, here's your diagnosis, you know, et cetera. But here's somebody to connect with. This is somebody in your area, this is somebody that, you know, would be really good in terms of age level or lifestyle or whatnot. Because, you know, I, I can imagine the, and I have to imagine, because I don't really remember feeling alone when I was diagnosed, but it was a very different time than we have today with technology. So I think in today's world, there's so much connection on so many levels, whether it's texting, or you know, a Facebook or a some type of online group or whatnot. I think it would be a nice idea, actually be like, Hey, here's somebody connect with them, and they can help you like, feel okay,

Scott Benner 12:31
have conversations. Yeah, I think that's one of the places where the podcast fills a void, because I hear from people a lot. I don't know, another person with diabetes. And I come on here, and the few times a week you put these conversations up with people, and I get to meet an airplane pilot who has type one and a firefighter as type one, or just some person, you know, and where someone comes on and says, Oh, you know, I have Hashimotos, too. And I'm, and they think I have Hashimotos. And then you know, it's just it's, it's an opportunity that just doesn't exist in the real world, unless you're gonna go to a diabetes camp. Right? You know, which they have for adults, and they have for for kids. But that's another thing you have to it's a week or two weeks, and they're not all over the country. And, and camps are an interesting, I like watching people talk about camps, because they're an interesting conversation. People fall on one of two sides of camps. They're either like, Camp is the greatest thing. You know, adults will be like, I still my best friends I met in camp when I was 16. And then there are people like, Arden, who I we wants to do you want to go to diabetes camp, and she was like, oh, no, do not make me do that place. And you know, and she didn't want to go to camp forget that it was about diabetes. Right? Right. You know, I have to skip through these. A lot of these people statements, they're lovely. And I want to thank everybody for them. But a number of them are just like, hey, that's the podcast, I found the podcasts and I don't want to just read all those. This person said, I wish they would have given us more access to a community, but like not not deliver it to us. Just tell us that existed. Like tell me there are groups online that there are podcasts. I had so much fear and anxiety, self doubt and blame no matter how much they say otherwise. But this community of moms and dads and adults with type ones was amazing for me. I think. I think that it's a message for doctors really, you know, it is

Jennifer Smith, CDE 14:27
and I think it shows it shows a degree of sort of a lack of information on the clinicians side. Not because they don't want it but because there's not one that's just a an approved Hey, these are the really quality places that you can go for more information. Here's your rip off card along with your rip off card about how to carb count. Here is your like resources from a community based law Have all and they're they're good places they're not, you know, Johnny's corner shop of information.

Scott Benner 15:07
Here's my I mean, I think my focus is pretty clear. But to put it in this episode, I think good, easy to understand information early is important. Yes, there is an entire segment of people who believe the absolute opposite, keep you not understanding give you small bits of information very slowly. They say don't overwhelm people, we had a real I'm not a very dramatic person. And online, I'm very proud of kind of the pragmatic way that I've run a Facebook group. But there was another Facebook group, that if you mentioned the podcast in the group, your posts would just be deleted. And people would come back to me and say, Do you have any idea what happened here? As if I would know I'm like, I don't know. I don't know these people. But I said, you know, they asked what helps you with diabetes? And I said, Oh, I began to listen to the defining diabetes series of the Juicebox Podcast, and I moved on to the Pro Tip series. Now my son has this a one C. And that's what helped me. And then they deleted it. And I said, Well, it's two things. First of all, people fervently love the podcast. And when they talk about it, they mostly speak very well about it. Except for a person who left a review the other day, Jenny about our bold beginnings thing that said they would be better if I didn't talk as much. And

Jennifer Smith, CDE 16:34
maybe they just like my voice better than yours and hurt

Scott Benner 16:37
my feelings, sir. Sorry. But But, but so I said, so I think there's a little bit of that when people share the podcast over and over and over again, it could probably seem like I put you up to it. And also, it's a weird thing, Jenny, but these Facebook groups become territorial. If sure if you have Face Book Group, a Jenny Facebook group, and you say what helped you, and they say, Scott's Facebook group, well, then you go to Scotts Facebook group and never come back to Jenny's Facebook group. And, and that bothers people, they lose their numbers. And,

Jennifer Smith, CDE 17:14
and I think the unfortunate thing there is that as a, let's call it, whatever you are a moderator of your group or whatnot, you're then limiting, you're limiting the quality that you're seeing that you're trying to put out there. Right, you know, you're limiting access to what might work for one person. Great. I'm happy to have somebody go elsewhere. If I'm not the right provider, or the right caregiver or whatever, for you. Go ahead, I would rather that you get good information and good care. And if you're getting it in a different way from a different place. Awesome. glad about

Scott Benner 17:54
that. I agree. But that's exactly how I run it. Like if when that happens in my space, and somebody's like, what happened, you know, what helped you and they're like, this XYZ Facebook group, I think, okay, good. Like, I think it's a strange thing. From a content. On some level, Jenny, I'm a content creator, right. And I need people to continue to listen to my content and share it or the, it'll just stop, like, it'll just end. It's hard not to be overwhelmed by that feeling. It's difficult to keep up the whatever's best for people's best for people. But I believe that, and that's what I do. Like, I also think that the time you spend online in the community, once you find it and realize that it's very valuable, you will spend a fair amount of time there. But it's usually six months, on the outset, maybe a year, and then people fade away. And that's beautiful. They learn what they need to know. And they go back to their lives, right. It's, it's what you would if you care about people, this is what you would want for them, you know, it's what

Jennifer Smith, CDE 19:00
and or when there's new information, people who feel like they've learned enough, may end up coming back now that there's something new available, something new that there might be information that's again, discussed in a different way, or a completely different technology or something. You know, they'll eventually come back. Yeah, honestly.

Scott Benner 19:21
So I hear from people too, that that happens to them, they cycle, but then they'll watch their a one C start to drift up. And they say, I just went back to listen to the podcast, and it wasn't management stuff anymore, because I knew the management stuff. It was It keeps them engaged, I think, yeah.

Jennifer Smith, CDE 19:38
It's motivating. And I think because there's enough, there's enough posting. I see which is really nice. of both. Like, let's call it the wonderful day, right? The no hitters where you're like, Oh, I'm clearly cured today. All right. All right. And then Next day or whatever, there are also posts of, I don't know what's going on, or, you know, this is what's happening. And people chime in, and they're like, ah, you know, we've had that before too, and whatever. So it's a sense of, when you're trying to get back to your management, sometimes it's a sense of seeing those motivators from other people, like other people have really bad days to or really bad times, or have had something occur in their life that got them off track. This is a way to get back on track to get those, those motivators even if you're just reading and you're not posting anything. It just helps us to stay connected and remind yourself I know, I know all the tools, I just, I just have to put them back in the right places in my life. And it's

Scott Benner 20:44
on you a little bit to be in the right mindset, too. Because if you see someone's success, and you're in the right mindset, their success looks hopeful. Yeah. And if you're in the wrong mindset, their success is like, it makes you think I can bleep this out. It makes you think, Oh. Why don't you Bolus for your blood sugar to over 120 You mother. But you have to be able to you mean you have to be able to let that go. And to step back and say, this is possible. Like I think this podcast as it grows, in my mind, it's mostly about what's possible. At this point, right? It's possible to do this, if that person can do it, then I can do it. They might know something that I don't know right now. But, and I, I'm stopping myself from reading over and over again. By far, this has been the best community Juicebox Podcast on Facebook, starting your podcast, especially defining diabetes in the QuickStart Series. I wish they would have given me your Pro Tip series on day one. Like there are countless comments here about this. And I want to tell you this story. Well, let me finish the other side of this. So we say when people are doing well, you can kind of respond to it a couple of ways. And when people are doing poorly. It also is helpful. I know that sounds crazy. But it's the same idea. You look and you think well, they're having a bad day. I've had bad days. Right? So this is normal to you know, it's not going well. And it takes away a lot of the angst from the whole Right. Right. It really does. Yeah. So so this thing at the beginning that I mentioned, I had a message yesterday from this is a long message. I'm not going to read it to you. But I'll give you the I'll give you the breakdown. diagnosed in high school, I think a senior on his way to college, finds the podcast listens to a couple of episodes, doesn't keep listening, goes away to college, drinking weed smoking, spiraling not paying attention to diabetes whatsoever. Blood sugar because it's college, three hundreds blood sugar's higher, a one C going up crazy. doesn't just doesn't even worry about it. I think COVID hits kind of refocuses the person a little bit person goes to a doctor to their Endo, and says, Hey, I found this podcast and I'm gonna try some stuff. And you can already see my agency starting to come down, I'm seeing some stuff, it's positive, and he starts telling them he's going to try it, doctor, whatever, do whatever you want, because doctors not helping. And then the person has a big success moves the agency really far life is changing, goes back to the doctor tells them I want to tell you about the podcast tells them all about the podcast, the doctor gives them the one of two responses that people tell me about either the doctors are like, This is amazing. It's great. Whenever it's more, whatever you're doing. Yeah, going, or you're just going to spend your whole life staring at your diabetes. And I guarantee you that that guy on that podcast doesn't do anything except watch blood sugars and blood and really amazing. Think about that. Right? The person takes their a one C from double digits into the sevens and the advice the doctor gave them was stop doing that. Just essentially Fascinating, right? So the the kid essentially telling this person,

Jennifer Smith, CDE 24:15
that they're putting too much time and effort into their own health management. Yeah, that's really the cut and dry of what this physician was saying what's

Scott Benner 24:24
in rest of that sentence that doesn't get spoken. So go ahead and have major problems later in your life or sooner maybe, you know, right? Yeah, but hey, at least you'll be drunk as a sophomore. Like what the hell are you saying to the kid right? Because the kid has making a change and is excited about it and then the doctor steps on it fast as fast that happens a lot. You have no idea how many notes I get from people. I went to the doctor, I was super excited. I knew my A once he was going to be lower. I knew my lows were going to be less. And all the doctor told me was to put my one C higher. Right Right. And and this three months of hard work, and you're looking for the pat on the butt at the end. And instead you get, don't do that. And it's hard for people to push through sometimes.

Jennifer Smith, CDE 25:12
Absolutely. I mean, you're not surprising to me, you get people all the time who are frustrated with the fact that not only are they usually being told that the highest can be expected, like high higher than you would want highs, right? And that if your insulin is working, you know, you're, you're to expect this and that's and or just the comment of, well, that's just diabetes i in today's day and age, that is still a common that's being you know, or a message that's being given to people. And that's really, really sad,

Scott Benner 25:49
really sad, especially in a world where I can pick my phone up right now and see that Arden's blood sugar has been somewhere between 80 and 110 for the last 15 hours, right? How can you tell somebody that's just diabetes? Why don't you tell them? Hey, here's this stuff that exists or try that or good job? How about how about good job? How about how about good job? person moved there a one see multiple points and found stability? How about good job, that'd be great. By the way, there's another part of that story I can't tell on here. But I'll tell you afterwards. It's about the doctor. And it's fascinating. I apologize that I can't say it here. When I was diagnosed in 2020, you and Jenny, we're all I had this. This group has been my support and my family. I was kicked out of the ER in DKA with insulin to Use as directed, but had to wait five and a half months for my first endo appointment. Every episode I listened to save my life and my Saturday. Oh, and I'm wonderful.

Jennifer Smith, CDE 26:48
That's wonderful. And it's also an I've said it before, but that's, that's why I love I just love being able to contribute, you know, to what you've put together because well, it makes it makes me just smile. That's super awesome.

Scott Benner 27:01
I am happy when you're happy for certain Yeah, this isn't a

Jennifer Smith, CDE 27:04
show you my I know people can't see this. But this was my day yesterday.

Scott Benner 27:07
Wow. Jenny's Jenny's showing me a graph. That's 24 hours. Oh, yeah, it's 24 hours. Yeah, some of you might look at and be like

Jennifer Smith, CDE 27:22
some of my data to kind of, I have an endo appointment coming up. And I like to take photos and whatnot of like, really busy days, like it included a run and included swimming in the afternoon with my boys and included, like all these things. And you know, not every day is 100% like that. But they're they're pretty days where you're like,

Scott Benner 27:41
I know, I did it. That's exactly right. And you should, by the way, celebrate that stuff. You really should. And it, it just it's very important. So anyway, I put all that I put this in this series, because A, I didn't realize how important it was when I started. And I've learned and B I think it's hard for people to accept, especially in the beginning, like you didn't want to have diabetes. And now what now you're gonna surround yourself with more people with diabetes, right? You're probably like, I wasn't looking to be in this club. Thanks. But it's, it's just like, give into it. I don't care. I don't care if you're one of those people who learns and stays on the Facebook page for years helping other people. Or if you get what you need, and you leave, or if you never say a word and you just read it, it doesn't matter. There's something really valuable about it. And it's it's not completely possible to quantify. But I am 100% Short works. And there's this long, there's this long lesson here that I won't read the entire thing. But this person said they found the podcast, and it felt overwhelming. And I understand that. And that's why something like bold beginnings exists, and why defining diabetes exists and all these other series that are inside of the podcast. So I did something Jenny, the other day that I want to put right in here. Yeah, I used so there's juicebox podcast.com, which is just it's a website where you can go and see most recent episodes, and a few of the series like pro tips and stuff are broken out on the front page. Because there are now 741 episodes of the podcast as of this recording. And podcast apps while they're amazing. They're not. It's not the Dewey Decimal System. It's it's not super easy to find stuff, you have to know what you're searching for if you're going to search. So I've had for a long time, another URL diabetes pro tip.com. And it just used to be an online player of the Pro Tip series and the defining diabetes series. But the other night, let me get it up here so I can make sure I'm saying this correctly. diabetes pro tip.com I revamp our tips Tip Because to Hakan No, really leave off, leave off the list. As for savings Jenny, I at first I thought, oh, diabetes pro tips.com. And then it was taken. So I use diabetes pro tip.com. When you get there, you scroll a little bit, and there is a player, the player has the first one, you'll see defining diabetes 44 episodes of that. And you can scroll right through really do that many doors, there'll be more so like, you just scroll through, and there's a player right there, you can play them in order, you can play them one at a time, or you can see the episode names and numbers and go back into your podcast player and find them there if that's, you know, easier for you. But you scroll a little farther, the bowl beginning series is there, which as of this recording has 11 episodes, we'll have more by the time you get there. 22 episodes of the diabetes variable series 25 episodes of The Pro Tip series after dark is now up to 27 episodes. And the cool thing about this is that as I add new episodes, they automatically populate in these players. So it's great, I don't have to go back in and add them like I put up a protip or excuse me, I put up an after dark episode today. And it's already available there. And then there are the wellness series, which was mostly with Erica Forsythe, and Eric and I are planning on doing a lot more in the coming months and years are asking, you know, when we do ask Scott and Jenny episodes, yeah, that's how many you know how many there are? No,

Jennifer Smith, CDE 31:36
I don't know.

Scott Benner 31:38
18 As of this recording, so really, we'll send in questions and we record episodes answering their questions, there's 18 of them. Algorithm pumping series is up to 17 episodes, defining thyroid series we did is there. I'm about to add some pregnancy episodes. So basically any collection of management type stuff. If you can't find it in your podcast player will always be at diabetes protip.com. And you can get to it through juicebox podcast.com as well. Good organization.

Jennifer Smith, CDE 32:11
That's I like that. Yes, I know. That's the kind of person I like organization.

Scott Benner 32:17
I think we all know that. That's not my wheelhouse. And it's pretty crazy that I even did that. But it just seems it seems important. I mean, listen, from a podcaster standpoint, I just want you listening in a podcasting app. It's the best thing for the show. But at some point, I realized, like this podcast has become it's a compendium of information. And it should be accessible, you know, in multitudes of ways. So that's one of them. I hope it helps everybody. Oh, good job.

Jennifer Smith, CDE 32:45
Awesome. Very nice. Thank

Scott Benner 32:46
you. Once again, if you need help with your diabetes, Jenny works at integrated diabetes.com. And in my opinion, there's no one better go check her out. I'd like to thank you for listening remind you that there is an entire bold beginning series that I hope you check out. The podcast has experienced insane growth in 2022. And that is directly because of all of you. So we're just going to take this opportunity right here before the music stops to say thank you, when you support the show, you're supporting me and the work we're doing. And you're helping other people with type one diabetes to be able to find this material. So thank you very much. Hope you enjoyed this episode of The Juicebox Podcast. I'll be back very soon, with much much more