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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: Category: advocate
Aug 18, 2020

Have you heard of Bolus Maximus? Behind that great name are two men with type 1 looking to bring new resources to the community talk about the tough stuff.
This week, Stacey talks to Brandon Denson and Matt Tarro. They share their stories and what they hope to achieve with Bolus Maximus.

Check out Stacey's book: The World's Worst Diabetes Mom!

Previous episode with Brandon Denson (from 2016!) 

In Tell Me Something Good, we have a few artists in our audience and some good news for the podcast.

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This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Episode Transcription (Beta)

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, the name caught my attention, but it's the people behind Bolus Maximus, who are looking to bring new resources and talk about the tough stuff.

 

Brandon Denson  0:37

Type 1 diabetes or the diabetes community in general, is a very, very tight knit community. But there's still a lot of work to be done. One of the main things that is going to separate us is that we're not focused on pulling you out from where you are. We're more focused on coming to get you from where you stand.

 

Stacey Simms  0:58

That's Brandon Denson. And he and Matthew Tarro, the creators of Bolus Maximus shared their stories and what they hope to achieve here

in Tell me something good. We have a few artists in our audience. And hey, a big honor for the podcast. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I'm so glad to have along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I have to tell you I'm taping this episode a little bit more in advance than I usually do. Because as you're listening, it's last week, we took my daughter to college, as I'm taping it is this week, and the plan is to take more time than usual. I mean, nothing is usual this year. But as I shared in a previous episode, we're far from this college. This is an 11 hour road trip we normally would have flown but with things being how they We are driving, and we have to stay because every college is doing this a little bit differently.

Her college is testing the students upon arrival for sequestered in a hotel. And then when they get their negative COVID test back, they can move in and you have two hours. I think that's the window to move her into the dorm. So I'm kind of thankful she's a sophomore this year. I was so nervous last year when we moved her and not just about she was leaving, but are we gonna have time? Are we gonna do everything right? And what about making up her bed and she didn't need any of that. But you only recognize that in hindsight, so if you haven't moved your freshman college student in yet and you are doing that, as you're listening, some point in the future really will be okay. They really don't need you there. You really don't need to do a lot.

My husband did move some of their furniture around. I mean, it was very limited what they could do, he did help with that. So he is the one moving them in this year. I will not be going for that two hour window. But we're all going together. I will report back I'm sure if you follow me on social media. I'll be talking about it as well. I don't have any words of wisdom about schools this year, Benny, who's my son was type one, he is going to start the school year virtually because his whole district is going virtual. And you know, we'll see what happens. I am optimistic that next semester will be in person. But I don't know why I'm optimistic. There's no signs that point anything changing, demonstrably. But I'll keep my fingers crossed.

All right, a lot to talk about this week, I reached out to the guys behind Bolus Maximus, because how could you not with a name like that? I saw them on Instagram. I thought What are they doing? And I found out and I'm going to share that with you in just a couple of minutes. And this is an effort that is really much needed in our community and I think these are the guys to get it done.

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A couple of weeks ago I attended I guess attended in quotes the virtual friends for life conference. And one of the topics that came up just in the conversation we were having in the equivalent of the hallway, right? We're just talking to other parents and other people with type one diabetes was men with type one and dads have kids with type one. How come there aren't more forums and places for those people to talk amongst themselves. And you know we kind of batted that around for a little while you know guys don't want to talk and you know they keep it to themselves or they want action. They don't want to talk about feelings and we've had the the dads and diabetes podcasters on the show. I think they are a great resource. There's lots of episodes I've done with men, certainly who live with type one, but just a place to like knock issues around and forums to do that.

Well, that's what Bolus Maximus is all about. And yes, we will talk about that name and how it came to be. And if you haven't guessed you might be right there several reasons and things behind that name, which was fun to kind of tease out of them. So who's behind that? Well, Brandon Denson is one of the pair here. And Brandon has been on the show before he was diagnosed with type one as a high school senior, and he really wants to play college football. He joined the Michigan State football team. He earned a full scholarship there. He's a walk on and he earned that scholarship to play at Michigan State. He's played professionally and he has also been on American Ninja Warrior. Again, I'll link up our past episode with Brandon. The other half of this pair is Matt Tarro. He was diagnosed with type one in 2002. his sophomore year in high school and he will share that story in the interview. He works at tandem diabetes and one of the things that comes up when you Google Matt of like Google, everybody I talked to because I'm very nosy. One of the things that comes up is this column he wrote for beyond type one called the guy's guide to type 1 diabetes. And I will link that up as well, because as I said, There just isn't a lot of stuff. bullous Maximus has weekly discussions, they say talking about the tough stuff. And I should mention, it really isn't just for guys, I know that they're trying to walk this line here. I think they're doing a very good job of it, that these resources are mostly for men. But there are many chats where women are welcome because they really want to hear all perspectives. I will let them explain more. Here's Brandon and Matt and Bolus Maximus,

Brandon and Matt, thank you so much for joining me. Welcome to the show.

 

Unknown Speaker  6:41

Thank you. Thanks for having us. Yeah, appreciate it. Stacey. Thanks.

 

Stacey Simms  6:44

Alright, so I've talked to Brandon before, but I haven't met Matt. And before we jump in and talk about Bolus Maximus, which by the way is fantastic. Let me just ask you, Matt, What's your story?

 

Matt Tarro  6:57

Thanks this Yeah, I appreciate that. Thanks again, for for having us on today. So I was born in a small state of Rhode Island, East Coast. And I've migrated out to the west coast now after years of working in digital advertising. I started it, you know, Time Warner and ended at Snapchat. So wow spent, I spent a career in digital marketing and advertising. And now I work at Tandem in San Diego. So I've been out here for the last 10 months and for the release of control IQ. And so it's been awesome to be here and working in that space now, doing something that I truly enjoy. And we'd like to do. When were you diagnosed with type one I was diagnosed is a sophomore in high school. And 2002 and I was 16 years old, living in Rhode Island, going to high school, swimming, you know, doing the normal stuff that I was. I played a couple sports growing up but I really just focused on swimming. So while I was playing When I was diagnosed during that season,

 

Stacey Simms  8:02

we're able to turn around and get back into the season.

 

Matt Tarro  8:05

Yeah, yeah. And that was something that was Yeah, that was really cool. There's another guy who was diabetic on the team. So I felt kind of comfortable getting back in there. And 16

 

Stacey Simms  8:13

were you driving? Did you do remember wondering if that kind of stuff was going to continue for you? I mean, it sounds like you went right back to things pretty easily.

 

Matt Tarro  8:23

Yeah, I did. Mostly because I felt like there was a need to do it. I think the delivery when I was diagnosed from my parents and the educators was that this is your disease. You can choose to live with it or not. I did tune out I mean, I don't want to sound like oh, yeah, took care of that. It was really easy. But we never really easy it just really no, true. So I came from medical family and my background. I wasn't going to go to medical school. But my background, you know, in my family's background was was medicine. So For me, I heard that every day at the dinner table it was always around my house. And it wasn't specifically diabetes, but it made it easier to deal with such a difficult thing. And yeah, then I then I started getting used to it.

 

Stacey Simms  9:16

Yeah, and Brandon, we as I said, we talked we talked for an episode a while back and you were diagnosed as a high school senior. Gosh, and then you but you went on to play football in college and then professionally, how are you doing these days? How are you keeping busy during an active physically during a time when we're all supposed to pretty much be staying in and staying by yourself? Yeah, it's been

 

Brandon Denson  9:39

it's definitely been challenging. You know, it's been a while since the last time we talked a lot of things have changed. The good worse in for better, but, but I would say just with staying active and walking a lot in always on the blades. You know the blades is I find that you know my for cardio versus running or anything crazy like that. So that's kind of homestead stand fit trying to Anyway,

 

Stacey Simms  10:09

when did you start? I'm assuming this is rollerblades. Pardon me. I'm an old lady. When did you start with rollerblades?

 

Brandon Denson  10:15

Man I started rollerblading. I actually let it people don't know I actually used to play roller hockey going on my brother. But by far you know I'm from if somebody Michigan but Metro Detroit, Detroit is not that far from where I grew up at. And I was a huge Red Wings fan. So Steve Iser, me and Chris, I'll tell you, all of those guys, I grew up watching those guys. I never played ice hockey. But I have I definitely have a passion for hockey. And also definitely roller hockey for sure.

 

Unknown Speaker  10:50

Alright, so tell me what Bolus Maximus is all about. Let's start before we get to the great name. What's the need here? And Matt, let me ask you what what did you two ideas defi as the need that you could fill,

 

Matt Tarro  11:02

when Brandon and I started to connect, it was through Instagram. And we started to communicate because I was volunteering for a nonprofit. And I didn't see what I wanted. So I didn't see somebody that I thought I should be working with President. And so I felt like I had to go out and find that person. And that search led me to Brandon Denson, because he displayed himself in such a way that it was easy for me to go, yeah, him, him and I will get along, put me in a room with that guy. And because of our personality, we're extremely outgoing. We're very charismatic, personable, and just happy individuals. It doesn't mean we don't have bad days. We learned about those bad days from each other through the conversations we started to have. And so this whole relationship really grew. From 2018 the first time we met after, you know, just kind of here in there, the diabetes space to like how many people have you met in person randomly? You like, Oh, yeah, I remember you from so so I wasn't that involved. So I never really had a chance to meet Brandon. And then by the time I did get involved, he was like the person that had to meet. And I'm glad I did.

 

Unknown Speaker  12:23

Yeah. So then Brandon, let me ask you. So what is the need, then that you guys are getting together? You're helping each other you got good days together bad days together? What what needs are you looking to fill here?

 

Brandon Denson  12:36

So So I think it's something as simple as if we thought that we needed that. Why wouldn't other people need that as well? Why wouldn't they need somebody to talk to? Why would they need somebody to engage with why would they need somebody to help them do their highs and lows and lift them up? We all go through the same thing we live with live with diabetes is stressful. It's a 200 to 365 24 hour a day job seven days a week. And you know, it can be very, very tough. Like, I know your son has it and I'm sure you know, you're his rock, you know, at the end of the day when he needs you or you need him, but you know, to have a community we wanted to establish in the community that we're here for everyone living with with diabetes, obviously, yes, a focus, we'd like to focus or we begin to get our focus with males. But you know, as a male there not a lot of knows that come on in this space, and I'm just gonna be completely transparent about it. The women are winning. They're winning down, you know, because they're, they're not, they're not and I wouldn't even say from a male perspective, a shame to show it. I think that men sometimes they wear this badge of honor that they don't have, you know, they don't have to let this worn out. It's okay to let that worn out and talk about the ups and downs that you're having living with diabetes. It's nothing to be ashamed about. You know what I mean? Doesn't matter if you're black, if you're white. If you're old. If you're young, none of those things matter, we just want to give a safe space. So people feel comfortable. And that's what we're starting. But we'll be working on a lot more things than just kind of bridging that gap in the community to cover everyone.

 

Unknown Speaker  14:13

Tell me a little bit about what you're trying to do, because this is such a huge challenge. As we've said, Men don't really like to talk about stuff to begin with, which is why there aren't more resources like this, it seems What are you doing to kind of help them

 

Matt Tarro  14:30

showing up in their space and being loud about not being quiet? And I think it's important especially now with what's happening in the United States and around the world to use your voice where you see fit and this for Brandon and eyes, but after we first met, really Hey, man, we we just communicate better with each other than we have with other people. So I was driving around I had you taken some road trips around the western part of the United States, and I was on the road for like four or 567 hours at a time. And I would use chunks of those time to call Brandon. And then we would have conversations while he was on the East Coast after work, and I would talk his ear off while I was like, I need somebody to help me stay awake. But like, we got a lot of stuff out and talked about a lot of different things where we, we understood how similar the need was, regardless of where we came from, how we were raised, who our friends were, or what we were taught, the needs still remains its support, and you need someone to show up and tell you that they're there for you to to help you.

 

Stacey Simms  15:44

So what do you actually what are you doing with bullets? backspace. You mentioned some zoom calls. You mentioned some other ways you're trying to get guys to kind of reach out because right now nobody's doing anything in person, but you're able to communicate. Cool.

 

Matt Tarro  15:58

Yeah, yeah. I mean, I So we've started with zoom calls, because obviously that's, you know, everybody's family. And that's how everyone's communicating. And we saw it as the easiest way for all of us to get together. And then we've been using Instagram and Facebook as a platform to start to advertise. And we've really been feeling it out. But that we knew, like I said, what we were talking about as far as a knee A while ago, sorry, my dog is encroaching on my space.

 

Unknown Speaker  16:30

That's what zoom is all about. I wish we could show that on the podcast.

 

Matt Tarro  16:36

He He's Yeah, he's usually with me. But so. So the, the idea was, you know, let's, let's start with zoom calls and put people in a position just to open up and see how that goes. And to say it's been rewarding as someone who knew that that was a need. And they're like, hey, let's try this. It's been great to see the reception. So we're going to start There, but our idea is to is to go and travel and find people in places that maybe they thought they, they had nobody coming to see them. So small communities, and then underserved communities, most importantly, the places that other people haven't been. And for whatever reason, won't go. So we feel like that need is a lot larger than just the male communities need to be addressed. So if we start with men, and we can address them, then I think we'll be able to, to start to maneuver our way around it to some different communities and make an impact

 

Stacey Simms  17:40

and branch it you've already had some experience with this, I would assume just because when you've been at conferences in the past, you know, people want to talk to you about playing football. And I'm sure you've been looked at as a role model. What are a lot of the things that that guys whether they're teenagers or adults with type one, I'm curious, like, what do they ask you about, you know, what are they curious about?

 

Brandon Denson  18:00

Um, to be honest, I like to, uh, after I speak or anything like that, or engage with anybody, anybody or share my story, I just say, you know, all bets are on, you can ask me about school, you can ask me about football, you didn't ask me about culturally how I came up with diabetes, you know, I don't really hold back from anything. And you know, I think when you when you kind of say like nothing is off limits, and that's kind of when the teenagers get DAX, and questions. Some of them raised some questions about girls or what should I do? When I play sports? What should I do on my pump? Do you wear your palm? You know, what teams have you played for? Things like that, but you know, I use my you know, I just try to use everything that I've been through, you know, as something to share, like, what would I be if I wasn't able to share that story? Yeah, maybe my story isn't this glamorous story like I you know, I had to walk on at Michigan State. I didn't What I was going to do when I when I was first diagnosed, but I knew deep down in my mind that I could still do everything that I set out to do. And you know, I wasn't going to let anybody in, especially diabetes get in the way of that. So I think when you're talking to individuals, whether they're 40 years old and just got diagnosed, or they're 12 years old, when you can share that story of everything that they that they're going through, or going to go through or have already been through that connection is, is unexplainable, you know, is is something that's very, very remarkable.

 

Matt Tarro  19:30

And I think just just to add to that, our ability to cater to different age groups, you know, just through conversations is something that Brandon and I discovered about each other, he, him and I both have shared a lot of experience working at camps. And then we've got backgrounds working with kids in general, right through camps in school programs. Riding on insulin now. We've both been coaches for writing on insulin camps, you know, at the same time on different parts of the country and that that's a really cool part to know that there's somebody else. At any given time, who you feel like you're connected with, we want to give more individuals that opportunity to feel like that.

 

Stacey Simms  20:13

talks to me about the name, I think people people think of the movie Gladiator, right? They think of Maximus or you know the name of the general or maybe it's maybe it's just large I don't really know. So we're just polis Maximus come from

 

Brandon Denson  20:29

you, you must be in like both of our heads.

 

Unknown Speaker  20:34

Like that. I like the way you broke that. Yeah.

 

Matt Tarro  20:39

And I appreciate you presenting it like that without us ever talking or like mentioning it to you. So to reference that movie, that is a perfect example. That was personally a favorite movie of my father's love growing up. So when when I would understand what people talked about as being like a man for some reason, like all these Other images kind of fade out and then this is like Gladiator looking dude standing there with the with the wind with a sword. He's like, Who's asked, we go on a kick. And so that mentality is, you know, as a diabetic, something that you would want to carry around. It's it's almost impossible though, to always be that person in this day and age. You can't be the big bad wolf all the time, yet you have feelings, especially as a man. And so there's a play on that to be certain. The easiest way to explain it is Brandon and Matt is Bolus Maximus bnm. And there's a max bolus setting on a pump, which is a real thing. 25 units, it's the most amount of insulin you could take at any one given time. And so you should put the maximum amount of effort into your diabetes at all times. I knew my high school Latin would pay off.

 

Stacey Simms  21:51

That's really funny. I mean, that's a wonderful explanation. I love it. In that movie, I can see that I can definitely see you as a kid, which kills me because I was a grown adult when you're away from having my first child when that movie came out in 2000. I just looked it up while you were talking. That's what happens. We're all the same age on a podcast. Yeah. But I love that because it's really, it really gets a lot of different points across. So what's your dream with this? And I know you're working together. But I'd like to hear from each of you, you know, you said when we can, again, traveling, getting in front of lots of different people who are totally underserved right now. And I think that's so needed. But it just sounds like this is a big project that you hope will will continue. So Brandon, let me let me start with you. You know, what do you really hope happens here? What's your big goal?

 

Brandon Denson  22:48

Like you said, it sounds like a big project. But at the end of the day, you know, Rome wasn't built overnight and there's a lot of holes and gaps in you know, in the diabetes community. And when we say community we mean community as an everybody as a whole. No matter where you're from, no matter what you look like, no matter your culture, none of those demographic, none of those things matter to you. The only thing that matters is that we bleed the same color. And we go through the same ups and downs. When we speak of the community, though, I think the main goal is to bring the community even tighter. I believe that the type 1 diabetes or the diabetes community in general, is a very, very tight knit community. But there's still a lot of work to be done. One of the main things that is going to separate us is that we're not focused on pulling you out from where you are. We're more focused on coming to get you from where you stand. And that's something a lot of organizations don't do. They expect everybody to come to them. And you know, like I said, it's a lot. It's a lot of work. It's even a lot of work up to this point. We've This will be our 10th week, hosting costs. But we understand what people get from those calls, you know, and it's, it's one of those things, we've gained that momentum, and we're going to continue to gain momentum. But there's going to be a lot, a lot more legwork that has to be done. But we're willing to do the end goal is to make sure everybody in the community has a safe place, not only just to be inspired, motivated and educated around diabetes, but they feel that they're a part of this.

 

Matt Tarro  24:35

In reality, when I look back between 2017, late 2017, around 2018, when Brandon and I started talking and the end of 2019, so almost like a two year time, end of 2017 to end of 2019. I traveled a lot around the western part of the United States. I would leave Los Angeles on two to three weeks with my dog and we would go out camp Every night and go to places we had never been to just learn about how to interact with people that you've never met before. And that how can you appreciate what they do different from where you grew up, and how you've lived. So after the years I spent on East Coast, New York City, Boston, I was there was an easy escape to get out to Montana in Nevada or Washington, Idaho. Some of my my favorite places are all in the states I've only been to in the last few years. So we're intending to go back not only to those places, but everything east of it, and start working our way into the communities to help bring people to places they've never been. And then to bring things to people that they've never seen.

 

Stacey Simms  25:45

Brandon mentioned, and you both mentioned the zoom calls that you've done, which I know isn't exactly the way you thought to kick this off, but we've all kind of had to adjust over the last couple of months. Do you mind me asking what you talk about? Are there particular topics that have come up

 

Matt Tarro  26:00

Our Our idea was that hosting calls was creating the safe space that Brendan mentioned before. So for us having topics that require the safe space, were obvious.

 

Stacey Simms  26:15

That's great.

 

Matt Tarro  26:16

Some of the things that we talked about during May was we had an opportunity to bring Mark Ayman and who, you know, is working as far as mental health is concerned during Mental Health Awareness Month, in a space that we asked him to come partake in a meeting, and he said, Yes. And that was awesome.

 

Brandon Denson  26:38

Because we got to grow to two females that were able to join. They reached out to us to make sure it was okay. Of course it's absolutely okay. If one of them was actually from South Africa, yeah. So,

 

Matt Tarro  26:52

so we we, you know, we probably could have made this clear in the beginning. While we do host calls for men, they are open to everybody. We spoke the

 

Brandon Denson  27:01

last two weeks. In regards to caregivers. That was a really huge topic that we saw. And we got a lot of feedback from in regards to caregivers joining and then also people sharing their stories about about their caregivers. We had a guy put his name out there, it's I don't know if he wants me to reference him, but he has a six year old son. And it was awesome to hear from him, you know, the things that he goes through, but he also invited one of his partners, a buddy of his and in the duel between that Father Son is unique because they both have type one diabetes, which I thought was amazing, but for him to come in, to get, you know, to listen to other people in the caregiving realm and you know, also be able to also be a caregiver for himself, but then also his son. You know, I think there's a lot of weight on that. So with that,

 

Matt Tarro  27:59

yeah, there's So caregivers, we've also talked, we did a couple of things in the beginning when we first started to host the calls that were more of skill shares. So hey, let's have the room, there's a soapbox in the middle of it, you want to stand on that you tell me you can. And it's not us making judgment or anything, whatever you want to bring to the group. So we had guys talk about graphic design, we have individual works with writing on insulin, who had a lengthy journalistic successful journalism career. And so that type of stuff really brought a different element. We talked about art, talked about different styles of art. We talked about movies, we did movies and music one week, you know, guy stuff, but in reality, that is also a way for us to bridge the gap between a difficult conversation, which we spent two weeks having, how to approach difficult conversations. laughter. You know, things really took a turn for the world. In the United States, after the death of George Floyd, and it's not something that we wanted to just bring people into a room and go, alright, let's talk about it. But that's actually what we did. And it was two of the best conversations to date. Yeah,

 

Brandon Denson  29:15

I'll say, I'll say hands down. You know, I think you never want to jump in, like, you know, and kind of discuss the things that are going on around the world. But the things that are going on around the world and in the United States affect us directly. Was it the easiest conversation probably to open up? and not so much was everybody willing to share they did, you know, and that was very, very important because, you know, you have different cultures, different races, not looking at it from a different perspective and only seeing it and then you have people saying that they're going to work to do better. And that's all we ask. We just want better, you know, better, better, better in sports, better in school better in the community and ultimately better with diabetes better But,

 

Unknown Speaker  30:00

you know, and

 

Brandon Denson  30:02

I do think it's it's so important because we, so many of us are worried and nervous to talk about race. I mean, let's just put it on the table. I've had these conversations before. There's such a lack of diversity at diabetes events and on panels. And, you know, I'm always so grateful that when my son was diagnosed, I could go to a conference and see people who looked like him. And no, people had the same traditions were Jewish. I met people right away that had the same traditions and background as us. And so I know it's so important when people, people who are black people of color to see people who look like them. It's as simple as that. But it's so hard to talk about, right? We don't want to say something stupid. We don't want to say the wrong thing. Yeah, and I think that's, you know, you hit it right on the head, you know, that's, that's a big, a big hole in itself. You know, I was a volunteer for jdrf for 12 years. And then I also was a worker for close to two years. And you know, you see this this big, get caught within the workplace outside of the workplace, and you see that nothing has changed, you know, nothing has changed. Like nothing me, I'm comfortable talking to anybody. But I can't say that if I took one of the kids that I knew from the school in Detroit that had diabetes, and I took them to jdrf event that they will feel comfortable there, because they wouldn't, you know, I'll be lying if I said that, that they would, or I took them to another community event and to say that they will feel comfortable, they will feel left out because nobody is interacting with them. Like they need to be interacted with, you know, and that goes a long way. You know, I didn't have somebody when I was growing up to talk to about my diabetes, cannot sit here and say that I may be needed someone. Yeah, I could probably say that. But at the end of the day, I knew it was my disease. I knew what I had to do. Everybody doesn't have that mindset. So you know, we want to make sure we create that space. No matter how old you are, what you look like, where you're from your culture. None of those things matter. Because we just want to help you do better in whatever it is that you want to do better.

 

Stacey Simms  32:04

Well, I appreciate you addressing it. I want to have a difficult question for the two of you, you have big goals. It sounds like when we can move around the country again, you want to get right out there. How are you paying for all this? What do you need?

 

Brandon Denson  32:19

actually gonna see if you will sponsor

 

you know, in a band, we'll put the logo on the side and we you know, a we will put the animated character on there. We were completely fine with that, you know, so, you know, we have a lot of work to be done as far as forming our our nonprofit and things, things of that nature. Obviously. Any nonprofit getting started from ground zero, takes a lot of work. This is grassroots, you know, but understanding the process of everything and what the process is going to be. As we look as we try to complete things they'll never be complete. It's never complete over the never be complete. And we understand that but we know that the steps to make it great are really rely on us and our board members and and, and everybody in the community.

 

Matt Tarro  33:14

Also we are offering videographer and photography services at a super good price in San Diego, Los Angeles. That's real because that's what Brandon and I do. And that is the type of thing that we would use to help fund this project. The easiest way for us to get information back and experiences and share experiences is to tell story and stories, many of them as many as we can. And the idea would be to do that through video and photo and to go and do that. Now. I've been doing freelance work for a couple years now. It is super inconsistent. If you get a couple of good gigs and you can, you know, put your best foot foot forward and get some more work based on it. That's what we're looking to do is is to have people see what we're already doing. We're making a lot of strides in the right direction. And I think, if anything, you know, we're going to work on our nonprofit, you know, getting everything set up, but at the very least, if we want to plug anything, it's the fact that Brandon Knight take really good photos and video, and we'd be happy to do it for anybody.

 

Stacey Simms  34:26

Everybody, okay.

 

Matt Tarro  34:27

Yeah. Oh, no, that was just my phone. Beeping.

 

Stacey Simms  34:30

Alright, just sounds like a Dexcom alert.

 

Unknown Speaker  34:34

All right, just checking the mom instincts kick right in. Okay, but so it sounds like you're gonna set up a nonprofit. You're but you end and Matt you already work at Tandem?

 

Unknown Speaker  34:45

I do. Yeah. So that and so.

 

Unknown Speaker  34:47

Okay, but I guess my question is, so tell me more about the photo and video. Is this a business you guys have as you said freelance kind of on the side?

 

Matt Tarro  34:55

Yeah. I never planned on even saying that on this call. We just We know that that's something that the both of us do in our own worlds that Brandon and I have operated in, you know, independently for the last 30 something years, we've put ourselves in a position now, to be in the same room with a bunch of cameras, drone tablets, I'm hosting some gallery space downtown San Diego. That's, that's what I was doing. And that's where a lot of my focus event. So for me, it's been everything, like just find what it is that you can do really well and that other people might like you to do for them. And that's been photography for me for a while. And so I've got photos and art up in there, we've created some art, we've got some t shirt designs. So the ideas have just been flowing every time we talked, like cool is another page in my notebook full. Well, I really, I've got you know, I've got a pretty good sized chunk of pages already full in that notebook of ideas, the direction we'd like to go and then reminders to ourselves about why we're doing that. Miss.

 

Unknown Speaker  36:01

I'm so glad to learn more about this. I'm looking forward to see what you guys accomplish. You know when, like I said, when you can get out and about but even before that, it sounds like you're already feeling a great need. I really appreciate you coming on and sharing it. I hope you keep us posted. We come back on and talk about it.

 

Matt Tarro  36:16

Most definitely, we definitely we're honored to do so.

 

Stacey Simms  36:19

Thank you. Very cool. Thanks again.

 

Unknown Speaker  36:27

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  36:33

Lots more information at the episode homepage go to Diabetes connections.com. The episode should pop right up it's on the main page. Otherwise you can use the search box as well. We have a very robust search. I like to mention that all the time because there's a lot to go through especially if you are new. Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by g bulk hypo pen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's rich evoke hypo pen comes in Jeeva is the first auto injector to treat very low blood sugar. GMO cocoa pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the G folk logo. g folks shouldn't be used in patients with pheochromocytoma or insulinoma visit g fo glucagon comm slash risk.

 

Tell me something good. I was really pleased and kind of surprised to find out that we have several talented artists in our Facebook group. Suzanne shared that she finally made time to work on my art. I've missed my pencils she wrote so I asked her a little bit more about it and she shared a picture. She's a portrait artist cartoon and realistic and a graphic designer. She's been type one since 2004 but she had gestational diabetes two times prior to that. She says she's been on the pump since 2006. Her dad lives with type two. And her grandfather and his cousin lives with type one and you can see an example of Suzanne's artwork at Diabetes Connections. The group on Facebook thank you so much for sharing that. It's just beautiful. And Callie nordgren who I've known for a long time just online you know, it's part of the we are not waiting community. She said I sold a painting and that's the calling posted when I asked her tell me something good stories like you know, oh, we'll do that sold the painting. So of course I had to ask her to share more. And she does watercolor paintings. She said sometimes people ask for specific painting. Sometimes they purchase one that she's already done and she posted one which is just beautiful and she has a Facebook page as well. And I will link that up. Calling son was diagnosed with type one at one year old, very tiny, maybe 1112 months old, and he is now a happy healthy tween and Colleen and Wes are a huge part of the we're not waiting community but I didn't know calling painted until now. So thank you for sharing that. And I have a Tell me something good. And that is that the podcast Diabetes Connections has made the top 10 for health for the fifth year in a row for the podcast awards of the People's Choice. This is a podcast award for independent podcasters. Right. No NPR, not the big Corp casters, not the ones that have 25 people working on a show. This is for the independent podcaster like myself, and I am so excited to make this list. Again. It's just a thrill. They will vote on the final winner each category. I believe that comes out in September. I never expect to win that. I mean, we are a tiny little operation here, but it's such a vindication. I don't know if that's even the right word. But you know, we work really hard on this show and it is a labor of love. It's also a commercial enterprise. You hear the commercials during this show. Man I work really hard on it and to be recognized by my peers like this by my listeners who nominate Thank you all so much for doing that. It really, really helps. It's really important to me and I'm really excited to have made this list again, when we when I don't know maybe we've lost some really interesting podcasts before my favorite was the guy who puts you to sleep. He has a podcast where he literally is boring and drones on and whispers and you go to sleep to that. And you know if we can lose to that, hey, what am I going to do? I can't compete with that. If you haven't told me something good story posted in the Facebook group, send it to me, you can always reach out Stacy at Diabetes connections.com and tell me something good. Diabetes Connections is brought to you by Dexcom. When you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years. But when it hit us at full force a little early. I was so glad we had Dexcom Benny's insulin needs started going way up around the age of 11. He's grown I don't know how many inches since he was 11 years old at this point, probably eight in the last couple of years. Along with the hormone swings. I cannot imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs loz see trends and adjust insulin doses with advice from our endocrinologist I know using the Dexcom g six has helped improve Benny's agency and overall health. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo. As you listen to this episode my kids are back in school if all has gone well we have dropped me off at college Benny has started school as you're listening this is scheduled to air the day after he starts school are virtually at home. I offered to make him like a homeschool virtual school nook in my house right I see all these beautiful pictures that people put on Pinterest and Instagram and their their kids desk is nice and it's like twinkly lights and a pillow or a little thing that says you know learning is great or whatever. And of course I wasn't serious because we don't do any of that were terrible parents and Benny laughed at me and said Please leave me alone.

 

Unknown Speaker  41:57

So if you've got

 

Stacey Simms  41:58

some interesting stories About your child is going back to school. And I think we all do. I'm not trying to make light Look, I know it's a serious situation. But I have only control over a few things. And that's what I'm going to concentrate on, on what I can control in my house with my kids in my community. And beyond that all we could do is vote diabetes wise, we're kind of in a groove. And with the weirdness of school this year, I don't see that changing too much. Of course, he's gonna be getting up earlier than he has since March. But other than that, I mean, we went on control IQ in January, he went off the receba and you can listen back if you're not familiar with our whole story on that he went off the trustee but in May and his blood sugar's just are great right now. Time and range is up, agency is down, predicted agency is down. I'm really really happy his independence is still really up. He's still a doofus and makes mistakes because he's a human being. And we're still compiling more world's worst diabetes monster. every couple of weeks we have a new one. That will never changed. Thank you to my editor john Kenneth from audio editing solutions. Thank you so much as you Listen, I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself.

 

Benny  43:10

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

 

Transcribed by https://otter.ai

Mar 31, 2020

In mid-March, the folks at Eli Lilly held a conference call for diabetes writers, bloggers, and podcasters. The call was to talk about Lilly's participation in the new Part D Senior Savings Model, as well as general updates about our insulin affordability programs.

After listening to some of the remarks, Stacey asked about the price of insulin and suggested a bold way forward. You can listen to what she asked, and the response here. Transcript is below.

Please note: there were many other advocates on the call - this excerpt only features Stacey's question but she was not the only person pushing for change. In particular, Amy Tenderich of DiabetesMine was also vocal about lowering the price of insulin.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

Links to insulin assistance programs:

Lilly 

NovoNordisk

ADA

GoodRX

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Transcription:

Stacey Simms  0:06

Hey everybody, welcome to diabetes connections. Although this isn't really going to be show today. This episode is more like an audio excerpt. I'm Stacey Simms, of course, and we will have a regular episode with all of our usual segments dropping as soon as later today, or more likely tomorrow.

I debated putting this one out. The production quality isn't exactly as it always is, because I'm doing a quick turnaround here. And it isn't usually how we do things, but I think it's important.

So here's what happened on March 16, the folks at Eli Lilly held a conference call for diabetes writers and bloggers and podcasters. The press release said during the call, you'll hear more details from Andy Vicari a leader on the Lilly diabetes insulin team about our participation in the new part D senior savings model as well as general updates about our insulin affordability program. grams. That was the PR quote, these calls are rarely groundbreaking. They do them sometimes they'll put out a press release that says largely the same thing. But they do give you the chance to speak directly to the people who help mold the policy. And I do try to join when I can. I am so glad I did this time.

The PR team welcomed us and told us that in addition to the planned remarks, Mr. Vicari would speak to the company's response to the Covid 19 situation. It became pretty clear though, that this really just meant he was going to go through the already published ways to get coupons and use the Lilly call center, you know, that kind of thing, which I will link up in the show notes along with other ways to try to get a break on insulin prices from all the manufacturers. If you're a regular listener, frankly, it is the usual stuff as far as I know as of this date, which is March 30th 2020. Nothing substantially new has been announced.

It's important to note and you'll understand why when you hear the audio From the call that I'm going to play, when you hear my question, there have been no widespread reports of people not being able to get insulin. There isn't a supply problem. I asked a little bit about that, because I had just been contacted by a woman whose local pharmacy wasn't carrying what she needed. But that was a local situation, and as far as I know, has since been resolved.

When it became clear that they weren't really doing anything new for what is an unprecedented world situation, a world health crisis, I decided to ask another question. I asked the folks at Lilly, why not? Why not do something very bold, very different and really show us what they stand for. And I want to play you that Please come back around at the end for an important announcement about what you can do to make your voice heard on this issue. Here is the unedited version of that portion of the call. The gentlemen answering my question is, as I said earlier, Andy Viacari, senior director, diabetes US insulin brand leader for Lilly:

(Call begins)

All right, I'm going to ask this question and I understand it might not be a very popular one. But, again, looking ahead to as you said, there will be things in place for people who are, you know, losing their jobs who are poverty level, that sort of thing. In a time of really what is very much uncertainty, understanding that people with diabetes cannot live without insulin, as you know, why not be a hero in the space and say right now, that Lily will cut the price of insulin to one level to $35 to $25. Why not let people fill prescriptions for whatever they are written for from their physician for a price that while would obviously be very dramatic, very different, would help people around this country feel better about the one thing that they are? I can't, I can't. I'm not exaggerating this, you know what we are in this community all of the people on this call one thing that people are devastatingly worried about, there are already reports of people who don't have insulin in their pharmacy. They're very, very isolated. I have no idea what brand they are. But this is something that's on the minds of everybody was type one diabetes and many people with other types. Why not consider something that dramatic, even if it's temporary?

 

Andy Vicari  4:32

Yeah, appreciate the passion and and some of the frustration in the question, I think it's important to acknowledge that, you know, what I can say from a human log standpoint. You know, similar to any other time, if we cut that price, could that disrupt the supply through our other supply channel partners that certainly we have contracts in place with them for a certain price so it would go beyond our ability just to cut that price. We would be having to negotiate with them. So certainly something that I think is feedback for us. I like the way you framed it. Why not? Maybe not the hero I think yourself and the folks that have any type of diabetes is the hero in this case, but we can play a significant role. What I what I will say is, we are constantly from a leadership standpoint, it's not a an overstatement to say, Mike Mason in our executive committee is constantly looking at for things we can and should be doing this time. So while I can't sit here and say it is something that has been considered and being planned, I think these conversations are further fuel for those types of interventions at a at a at an enterprise level. What could we be doing around this space? And it's important that I'll make sure that I continue to come back to my leadership, as we close this call and have those conversations What else could we be more vocal about? What else could we come out and announce to help people in this time and it may have all Just given the circumstances with the country and what's happening. So what what I can't promise you is that there'll be an immediate reaction. But what I can say is we're always looking at these things. And the steps that we've taken, the quickest way for us to do that would be with our authorized generics. Again, we have similar contracts the same contracts in place with our, with our wholesalers and with our pbms and payers, so we would have to be renegotiating with them, and they'd have to be okay with that. Now, you could argue that they they can and should be, it would be very difficult for them to say anything other than that's a good idea, but I can't comment for others in the supply chain. I know that's perhaps not the exact answer that you'd like but it's a it's a real answer on we are always considering these other options. And by cutting our price just automatically, we would put at risk those folks that are stable on our products with just not getting covered by the P ends and payers that have us on today.

 

Stacey Simms  7:00

I do appreciate the answer. I just think that - just a bit of an editorial statement, you know, a crisis is a time to define what your company is all about and what an opportunity, I really hope you guys consider that and let the pbms and the others say no, I mean, let's give them the chance to, to not step up to the plate. And let's see what happens.

(end of call)

But do you think will Lily take any bold steps? I know most of you are skeptical, but you never know. And as I said that was an unedited portion of the call. There were other diabetes bloggers and writers on the call asking their own questions that hat tip to Amy Tenderich of diabetes mine for seconding. My thought and backing me up and and pushing ahead on that too.

But what can you do? Is there anything right now to take action on Patients for affordable drugs. A group we've talked to here on the show before, has put out a call for all three insulin manufacturers to lower their prices right now, in response to this health crisis. There's a letter it is being released on Tuesday, March 31. I've signed it virtually, of course, and I would urge you to check it out and sign it as well. I'll link it up in the show notes and I'll share it on social media once it is live. Let's keep pushing on this issue. It is in times like these, that companies truly show us what they're about that big change can happen. And as Amy said on the call, that it's a time for disruption. It The time is ripe. So make your voice heard. Let's do what we can. I know a lot of you already, as I said are not optimistic, but we cannot give up.

Thank you for tuning in. Regular episodes are coming your way the next one will be out as soon as tomorrow. I'm Stacey Simms. Subscribe to the show on any free podcast app so you don't miss out or just come back the way you found this audio excerpt. Thanks again for joining me

 

Unknown Speaker  9:09

Diabetes Connections is a production of Stacey Simms media. All Rights Reserved all wrongs avenged.

 

Transcribed by https://otter.ai

Feb 27, 2020

Have you ever had a doctor give you a "wake-up call?" or try a "scared straight" tactic? These techniques - and a lot more - blew up on Twitter recently. Stacey noticed that it also seemed that the doctors andhealth care providers who weighed in weren't interested in listening to diabetes advocates online. What's the disconnect all about?

Full transcript below

Check out Stacey's new book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription: 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available on Amazon as a paperback ebook and audiobook at Diabetes Connections.com.

 

Announcer  0:15

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:26

Welcome. This is one of our mini episodes, shorter episodes that I put together starting at the beginning of this year, just when I have something to say, news to share or anything that doesn't fit in the traditional longer format interview show that we do every week that drops on Tuesdays.

I am your host, Stacey Simms, and I want to talk to you today about well, I really want to talk to your doctors about something, but we'll get to why and maybe how to share with them. I want to talk to you about what are doctors think of diabetes, and I don't really mean our endocrinologists Just to hopefully know what they're talking about and stay up to date. I mean, the other doctors that we see or we bring our children to pediatricians, the doctors, the dentists, you know what I mean, right? There seems to be this disconnect between what the diabetes online community which doesn't speak in one voice, I get it. But what we have learned over the years and what we talk about all the time, in terms of there's a hashtag language matters, right?

There's this disconnect between what we as patients want, which is no blame and shame. Work with me, help me with resources, give me the information, let me make my decisions. And the physicians who many many, many times want to scare patients straight, you know, we're gonna give them a wake up call. We're going to show them how bad they're doing and that will make them do better. And this disconnect played out on Twitter recently and I want to share with you how it went and then I would ultimately was shared at a medical conference.

Before I jumped right in though I do want to Say with those doctors who are you know, in the scare em  straight kind of school, I really do think the intentions there are good. I don't know any doctor who wants their patient to walk around with a 14 A1C, you know who obviously isn't feeling well and is going to be in poor health. I don't think any doctor wants that. The question is, why don't some doctors listen to their patients more? Why don't they seem to believe us when we tell them what we think works and doesn't work. So that's my perspective. today. Let's go through what happened.

There's a guy on Twitter. His name on Twitter is @DGlaucomflecken. He says he's an ophthalmologist, a comedian, and a speaker. On February 17. He tweeted, “Want to know why diabetic eye exams are so important. I can take a 28 year old with an A1C of 14, show her a picture of a normal retina, then a picture of her diseased retina. Then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.”  And he posted the pictures that he had just talked about now.

Kind of an innocuous tweet a couple of years ago, I probably wouldn't have thought anything of it. But and I was not alone here. There were some telling language in this that made me want to speak up. I'm going to link this up if you want to go through the Twitter thread. It is ginormous because a lot of people chimed in as you can imagine. I'm going to read a few tweets here. I'll just read first names from the people who tweeted this out. So these are the advocates who tweeted back

Megan wrote, “As someone who works in eye casualty for a while and has type 1 diabetes. I have heard doctors have similar conversations. I then also seen patients walk away upset and distressed. Living with diabetes can be filled with anxiety. I find it best not to feel that scare tactics aren't always the best understanding and empathy for diseases hard to manage may be better.”

Melinda wrote, “Did you ask her if she could afford her insulin and supplies? If she had a support network to encourage her or did you just decide to be Dr. Judgy Pants?”

Melissa wrote, “Do you know if she went to her car and cried from helplessness like I used to after I exams with an ophthalmologist who had This kind of bedside manner? It took some time to find a doctor who could help me create a plan instead of send me off alone and frightened.”

And then Mike wrote, “This mentality scared me into doing something better briefly as a teen. Soon enough, it led to hopelessness and years worth of higher A1Cs until love, actual good doctors and peer support inspired me to change how I lived”

I wrote “Curious if there are any long term studies showing this is effective, other than the patient saying, Wow, that's a wake up call. What is it like for them? 10 years down the road? Did it help hurt make no difference?” And I actually wrote “not being sarcastic, genuine question” because you know, Twitter, but then the ophthalmologist chimed in back.

And during all the time these advocates are saying these things, other doctors and other people are telling us how wrong we are. So the original ophthalmologist chimes in with, “I'm just showing people their own body part. I've never had a patient get upset with me for showing them pictures. I have taken up their own body part. I don't need a study to convince me to keep doing that.”

Another doctor said “Patients Like pictures. We do the same with coronary angiograms. In cardiac patients, a picture's worth 1000 words, also puts in their minds the idea of the now and the potential future, good practice.”

Another person a medical resident wrote, “I like it, it's hard to convince some patients without symptoms that keeping an A1C down to an arbitrary number is worth the effort of diet, exercise and expensive meds. This could help motivate many patients.”

And then he writes “Also, it's not the author's job, the ophthalmologist job to make sure the patient has all of the resources needed to adequately treat the patient's diabetes during their brief eye exam. That's our jobs as PCPs.” So that's what he's going to be or may be already is I can't really tell from his Twitter bio primary care physician.

Okay, so, literally, this went on for days, I kept getting notifications, because I kept chiming in, like, Are there studies like, oh, let's talk about this, you know, and, as you can imagine, it got pretty nasty sometimes. I mean, there's jerks in every Twitter thread on every side, so we're not going to talk about that. We're going to talk about the discussion and the disconnect because this is that fascinating.

Most of the doctors really believe this is a good thing, I'm so glad that that primary care physician chimed in and said, “well, it's really not your job as an ophthalmologist to give them any resources or do more with them.” And this original doctor kept chiming in and saying, “No, I really do try to support patients.” It was just one tweet, you know, we don't know what he's really doing. So maybe he is, you know, talking to them more.

What about your experience? In my experience with those other doctors, right, not the endocrinologist, the eye doctor, the dentist, even the pediatrician with Benny, they have no idea what diabetes takes. That's okay. It's not their specialty. I don't mind that. They don't know. I mind when they try to tell us more than they know. Right? Like, I had an eye doctor once Tell me, Benny was not in the room, he asked, “how long has he been diagnosed?” 12 years. I think at that time. “Well, you know, 20 years is when the complication starts showing up in the eyes.”

And I actually said out loud because I'm a pain in the ass patient. And I said, Really? What was the last time you actually read anything in a medical book about diabetes? I tried to be nice, I said it kind of nicer than that. But it's it really, when did you learn about type 1 diabetes? And he said in medical school, and I said, and when was that, right 25 years ago? And really, when were those studies done? Right? If you're looking at a study from 25 years ago, that study probably followed people living with diabetes who had been diagnosed at least 10, if not 20 years before that. So your data is kind of outdated. And we know if you're a longtime listener of the show, you know, from studies like the EDIC trial, and many others, that eye complications, along with many other complications are way down and almost non existent for people with diabetes, who have access to good care and insulin. I mean, we know there's a whole other world out there, but we know these complications when care is given our way down.

And whenever I talk about complications, I always want to say complications can happen even with the best care with diabetes. I mean, look at life - complications can happen with anything. So we try to do the best. We can see just other factors, you know, genetics, environmental, what have you. But with eyes in particular, I've talked to two endocrinologists in the past year, who say when they see a patient with any kind of eye issue under the age of 40, with Type 1 diabetes, they call everybody who's nearby, because they never see it. They want everybody to come in and identify it and look at it and see what the poor patient, but see what it really is all about, because they never see it anymore.

So my little conversation with that eye doctor, hopefully made him rethink a little bit about how he talks to other people with diabetes. I've had the same conversation with my pediatricians when I feel like educating because sometimes it is absolutely exhausting. And I had to back away from the Twitter thread because of that, that it is exhausting to keep educating and educating. You don't know everything about type 1 diabetes, you're not a specialist. Thank you for pointing this out. But what can we do about it? What's the point? Why would you say you're going to be in trouble? I'm going to give you a wake up call. I'm going to scare you straight. Why would you say all those things Thinking the outcome is going to be positive?

If you're aware of a study that talks about these things, and I was pilloried on Twitter for suggesting there could be a study, what would the control group look like? people who never get good health information, people who are never shown their bad eyes, or that they're going to lose a limb or blah, blah, blah, right? No, look, I don't create scientific studies. But you don't have to be a genius here. But why couldn't you something really short, that just gives you a taste of what we're talking about here?

Do a six month study, right? Pick an age group to a six month study your 25 year olds with Type 1 diabetes, everybody gets the same exams, but your feedback is - you're doing terrible. You have to be nervous. We're scaring you straight, kiddo. It's a wake up call. Now go get better.

And the other one is, Hey, I really feel like we could do more together. Well, how can I support you? What are the challenges you're seeing that are creating these issues with Type 1 diabetes, there may not be anything I can do to help but I understand that you're probably doing the best you can because type one is really difficult.

And then the other one, the third part of the study would People who are told here are your test results. See you next, right with no emotional kind of feedback. Why couldn't you do a quick study of that and see what happens in just six months? My guess is you would see really interesting results.

So better minds than me, thank goodness picked up on this and actually put it in a presentation at ATTD, at the international conference for advanced technologies and treatments for diabetes. This is the conference that I just talked to Kevin Sayer. That episode just aired a couple days ago. This is where he was in Madrid, Spain. So this is a huge international conference and this Twitter thread made it to a presentation, which shocked me. What shouldn't have shocked me is who was doing the presentation. This was the hashtag talk about complications presentation by Renza Scibilia and grumpy pumper Chris, who we've had them both on the show separately to talk about this and other issues. But this talk about complications slide that made its way to the presentation showed the original a tweet from the doctor, the ophthalmologist comedian, and they actually blacked out his name, which I didn't do here, because Twitter is public. And they showed the original tweet, you know, very effective wake up call. And then they put another tweet next to it. And I think that this is a hope that physicians might consider saying this instead.

So let me read you the original tweet again. And then the one that they suggest. So the original tweet, “Why are diabetic eye exams are so important? I can take a 28 year old with an A1C of 14 show her a  picture of a normal retina, then a picture of her diseased retina then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.”

Here's an alternative to saying that “Diabetes is really tough, and you're managing as you can right now. Thank you for coming to see me eye screening is really important. We know having a higher A1C increases the risk of diabetes related conditions. Let's work together to try to reduce the risks.”

Now I know some of you and maybe hopefully if you got your physician or not Doctor or dentist or somebody else to listen to this episode, it might sound very, you know, Kumbaya and woo woo. And, you know, let's work together. But I'm telling you, as the mom of a kid with type one, as a person who sees doctors for her own conditions, it is so much more helpful to hear this than to hear the other scary, effective wake up call.

I mean, you know, when I go to my doctor, and I say, I'm really upset, I've been trying hard and gaining weight, you know, what I don't want to hear is “You're really fat. And we know that being obese can help lead to health complications, and higher increase of cancer. Because you know, you really want to watch out what happens, you have this risk and your family and blah, blah, blah. So just stop eating desserts.”

What would be really helpful is, “Yeah, boy, it's really tough. I can see that your whole life, you've been a healthy weight. You're an active person who knows how to eat well. What's changed in your life in the last couple of years? How old are you? What is your metabolism doing? Let's sit down and talk about how things are changing maybe so that you can find a plan that might help you change”

I mean, I just came up with that at the spur the moment, but it's so much different to here. Let me help you. And let's figure out what you can do to make this better rather than let me blame you and shame you and scare you. A lot of people tune that out. And if they're scared, they don't want to do anything to make it better because they lose hope. I really hope that some healthcare professionals who saw this on Twitter took a moment to stop and think about it. I know a lot of them responded. And remember kind of insulting frankly, calling the diabetes advocates, trolls and one person called the bats. I don't know if that's a UK thing, or I don't know what that was all about. And there were some people who got kind of nasty, as I said earlier, but I really hope that people who saw this conversation, maybe had a different conversation with the next patient that came into their office, maybe a person with diabetes, who saw the conversation had the words now to tell one of their health care providers. Look, this isn't helping me. I need you to speak to me in this way. Which is really, really hard to do.

I will say before I let you go here that a lot of the physicians piped in with Well, my patients never react poorly when I give them this news, they all seem to appreciate it. Do the doctors not know that we talk to them differently than other people? Do doctors not know that some people like get dressed up to go to the doctor will really make sure that they are well groomed. I mean, it sounds silly, but you know exactly what I'm talking about. Right? doctors don't realize that we go to our cars. And as Melissa said, in that tweet, sometimes we cry, we call the friend and say you won't believe what happened to me. Or some people will tell a nurse things that they won't tell a doctor or they'll tell the front receptionist and they'll get the anger and so the doctor, people don't tell their doctor unless you're me and you're a pain in the butt.

Very few people tell their doctor, hey, you're wrong. Or I don't like this. Or even Can we try something different? People don't talk back to doctors. And the fact that they don't know this… Come on, guys. You got to be better. You got to think about it.

What do you think my way off base here? Were you part of that? Twitter chat, did it make you mad? Did it make you think? Let me know. You can always email me Stacey at Diabetes Connections. com. I'll put this in our Facebook group as well Diabetes Connections of the group on Facebook. I'd love to keep the conversation going. If you're a physician who has listened to this long oh my gosh, thank you so much. I cannot tell you how much we appreciate it when you take a moment to consider the other side of the stethoscope for lack of a better word. Let's keep this conversation going.

Of course, if you think I'm wrong, I am the world's worst diabetes mom, I can live with that. And you can find out much more at the website diabetes dash connections.com. Please subscribe to the show on any podcast app or just keep listening through social media or however you found us. We appreciate that we're not going to tell you where to listen. We just hope you keep on tuning in. I'm Stacey Simms, and I'll see you back here next week.

 

Unknown Speaker  15:57

Diabetes Connections is a production of social Stacey Simms media All rights reserved all wrongs avenged

 

Transcribed by https://otter.ai

Oct 8, 2019

Halloween doesn't have to be scary for children with type 1 diabetes or their parents. Moira McCarthy & Stacey are back with Ask the DMoms. They answer your questions about all those bags of candy, lows while kids run around the neighborhood, pumps and d-tech under costumes and much more.

Order Stacey's new book - The World's Worst Diabetes Mom

In Tell Me Something Good: A good beat and a follow-up that lets us say yes to the question.. is there a doctor in the house?

Join the Diabetes Connections Facebook Group!

Listen to our previous episode with Kelly Kunik dignosed as a child on Halloween.

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00:00 Show Open: What's on this week?

1:40 Stacey welcome: Thanks to Friends for Life Falls Church! The World's Worst Diabetes Mom is available for pre-orders! It will be on Amazon Nov 3

5:20 Ask The D-Moms: Halloween

35:30 Tell Me Something Good: Blindfolded Drummer & Dr. Heather Walker 

38:30 Where's Stacey Going Next?

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Jul 9, 2019

JDRF’s Children’s Congress kicks off this week and we’re talking to three really incredible delegates. Meet Jack, Hannah, and Kabir who will all tell their stories to legislators. You'll also hear from Stacey's local advocacy chair to find out what Children’s Congress is all about and how to apply next time around.

Join the Diabetes Connections Facebook Group! 

Our Community Connection this week is all about getting diabetes gear to stick in the hot sweaty summer. We’ve got advice from parents of little swimmers and adults who take hot yoga.

Scroll to the bottom to see a list of items/products mentioned during this episode.

In Tell Me Something Good, we’ll talk about a trip of a lifetime as a 16 year old travels to the remote Yukon with a school group. 

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This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Show Open/Tease

Stacey Welcome - Find out more about Project 50 in 50

JDRF Children's Congress Greater Western Carolinas Chapter Delegates

Community Connection Getting Gear to Stick:

TMSG: 

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Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android  

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

Stay Put Medical 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)

May 21, 2019

For 14 years, Kerri Sparling has shared her story on the very popular blog, SixUntilMe. This month, she published her last post. We take a look back with Kerri and go beyond the blog. We also asked her mom, Debbe, to join us! Debbe shares what she thinks of Kerri's accomplishments and influence and we talk about raising a child with type 1 in a time with very different technology and tools. 

Join the Diabetes Connections Facebook Group! 

In our Community Connection – help for people with diabetes who have insurance but still can't afford all of their supplies. We catch up with Diabetes Will's Way as they celebrate 5 years!

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And Tell Me Something Good – meeting your people for the first time. How diabetes conferences are good for the body and the mind. Listeners share their stories and Stacey talks about a recent TCOYD conference.

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00:00 Show Open - What's going on this week?!

1:46 Stacey Welcome - She shares a great mother's day present: Benny was Rufus at their local JDRF walk and Lea worked a food truck at the walk. Proud mama moment! Some info about the website - it's still under construction - you can listen to shows there but lots of good new stuff is coming!

5:15 Interview with Kerri Sparling and her mom, Debbe

40:00 Catching up with Lisa Oberndorfer, the founder of Diabetes Will's Way - she's Will's mom - as she marks 5 years of helping people with health insurance who still can't afford what they need. Will was diagnosed at 13 and just graduated high school this year. He was the valedictorian of his class! We also hear from Kathy who received a grant for her daughter's Dexcom CGM.

55:15 Tell me something good: Sarah is 26 just recently diagnosed and met her first T1D people at the EPIC conference in Denver. Stacey talks about the TCOYD conference and a specific session with Dr. William Polonsky of the Behavioral Diabetes Institute 


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 
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Feb 5, 2019

Let's #Talk About Complications. That’s a hashtag created by this week's guest who's taking a topic that most of us would rather avoid, and putting it into the spotlight.

Chris Aldred is better known as the Grumpy Pumper and he wants us to stop being ashamed to talk about possible complications from diabetes and to stop the blame surrounding this dicey issue.

More information on his blog here

Find out more about Spare A Rose

Find out more about Diabetes Podcast Week

Join the Diabetes Connections Facebook Group! 

Also this week, your diabetes educator is getting some help when it comes to staying current on technology. Stacey talks to AADE's Chief Technology and Innovations officer about a new resource for educators called DANA.

And, tell me something good: a big step forward for a 5 year old two years into her T1D journey and a big award for a tween.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider
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1:40 Stacey welcome, explains that Chris Aldred's son was just diagnosed with type 1 over this past weekend. She explains Diabetes Podcast week and shares a story about Nick Jonas's wedding reception, not far from where she lives.

8:30 Interview with The Grumpy Pumper

39:20 Interview with Crystal Broj

47:00 Tell Me Something Good: Congratulations to 5-year-old Rose who just checked her blood sugar for the first time! And congrats to 12-year-old Logan Merwin for winning the JDRF Spirit Award at Run Disney! Learn more about Logan, the Elbow Bump Kid


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 


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Dec 11, 2018

Advocate and author Quinn Nystrom was diagnosed with type 1 as a young teenager, just a few years after her little brother developed T1D. Her high school prom date inspired the title of her book, "If I Kiss You Will I Get Diabetes."

Quinn shares her story, talks about running for office and tells us what's next. 

Plus, MySugr CEO Frank Westermann on how his company tries to help make diabetes suck less (and we get Stacey's reaction to that motto).

Want Stacey to speak at your event in 2019? Email stacey@diabetes-connnections.com or connect on any of our social channels.

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2:00 Stacey welcome

3:00 Stacey shares podcast reviews (one is a question about the Facebook group, link below)

Join the Diabetes Connections Facebook Group! 

5:00 Scott Johnson interviewed Stacey last week via FB live. You can watch that here or read the transcript! Stacey also shares the story of the first time she met Scott at the Friends for Life conference.

8:20 Interview with Quinn Nystrom

47:30 Interview with Frank Westermann

57:40 Stacey talks about events for next year


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 
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Get the App and listen to Diabetes Connections wherever you go!

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Oct 23, 2018

Once called deliberately non-compliant, this week's guest is all about the importance of language when it comes to diabetes. Renza Scibilia has some strong opinions about why words really matter.

We’ll talk more about her non compliance – it has to do with her Looping, using one of the do it yourself options - and about her diagnosis as a young adult. Plus, information from Diabetes Australia and The Grumpy Pumper

In our Community Connections this week, the Type 1 Renegade Run is making noise in the Northeast. The event this past weekend marks the 7th year of this obstacle course and block party.

And a closer look at keeping insulin at the right temperature from the pharmacy to your fridge. JDRF, ADA & Helmsley Trust are teaming up to study this issue. 

Did you see Chris Ruden pop up in the NBC Titan Games promo?! Here's our interview with the T1D body builder from last year.

 
Join the Facebook Group! 


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1:30 Stacey Welcome - Syracuse and DC round ups, looking ahead to the DiabetesMine Summit

4:00 Interview with Renza Scibilia

39:40 Interview with Renegade Run's Tyson Sunnerberg

52:00 Know Better: insulin study

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Sep 27, 2018

A difficult but important interview with Nicole Smith Holdt. Her son, Alec, died in 2017 just after he came off his parents' health insurance and realized he couldn't afford his supplies. He began rationing insulin and died less than a month later.

Stacey talks to Nicole about how this could have happened and what her message is to the diabetes community and to lawmakers. Nicole will be at the #Insulin4All rally and protect Sept 30 at Eli Lilly headquarters.

More information:

Insulin4All Protest information

NPR: High Price of Insulin Leads to Lethal Rationing

Snopes: Did Alec Smith Die Because He Couldn't Afford Insulin


Join the Diabetes Connections Facebook Group 

Sign up for our newsletter here

Get the App and listen to Diabetes Connections wherever you go!




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