281 episodes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent diabetes 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.

Diabetes Connections with Stacey Simms Type 1 Diabetes Stacey Simms

    • Health & Fitness

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent diabetes 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.

    Minisode #7: Spare a Rose / What Can We Do About The Price of Insulin?

    Minisode #7: Spare a Rose / What Can We Do About The Price of Insulin?

    Two big topics for this mini-espidoe. Stacey talks about Spare a Rose and talks to the leaders of Patients for Affordable Drugs.
    Check out Stacey's new book: The World's Worst Diabetes Mom!
    Spare a Rose is an initiative to get insulin and other vital diabetes supplies to children in the developing world. Learn more here 
    Join the Diabetes Connections Facebook Group!
    Stacey also talks about what we can do about the price of insulin with Patients for Affordable Drugs founder David Mitchell and Lauren Stanford, the community organizing director.
    Sign up for our newsletter here
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    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!
    Click here for iPhone      Click here for Android
    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 One Diabetes available at Amazon as a paperback ebook and audiobook. Learn more at diabetes connections.com
     
    Announcer  0:20
    this is diabetes connections with Stacey Simms.
     
    Stacey Simms  0:26
    Hey, welcome to this week's minisode something a little bit different. I've been doing these short episodes all year long for 2020. And this is our first interview type episode. But I wanted to get some information to you that I thought would be interesting and helpful and about patient advocacy. So we're going to talk about what's been happening with patients for affordable drugs. I spoke about them. Last fall of it put out a report and I wanted to follow up on it. Of course there's a lot of information in the news these days about the price of insulin price of insulin There were advocates at State of the Union address. These are not the same advocates, but a lot of the same push. And I also want to talk about spare arose. So let's do that first spirit arose is an initiative that happens every year to help kids with diabetes in developing countries, so that they can get insulin. It doesn't take a lot of money to help out and it really does make a huge difference in the lives of these people around the world. Why is it called spare arose? Well, back in 2013, a group of people in the basically the diabetes online community realized that for the price of one rose for Valentine's Day, they could make a huge difference in the lives of children. So you spare a rose, you save a child, they've expanded it so that you can, you know, spare quite a few roses. There are different ways to pay for this. But it's really a very simple concept. Where does the money go? There is an organization called Life or child, and they partner with diabetes centers in places like Rwanda, Mexico, India, to give critical supplies to young people who really have nowhere else to turn. Right now, this program supports 21,000 people in 42 countries. And the goal here, no child should die of diabetes. If you'd like to learn more, I will link up everything in the episode homepage. You can see pictures of the families that have already been helped. You can read stories of kids who need help, and you can find easy easy ways to donate. So if you can possibly spare arose this Valentine's Day, it would be very much appreciated. We have done a lot on this in the past. I will link up a very fun episode we did a few years ago with Carrie Sparling and Scott Johnson and Bennett Dunlap, where we talked about this initiative. Gosh, it was probably 2015 maybe was 2016 but it was a while ago about learning more, and why I really do urge you to consider taking part in Spare a Rose
    While you're learning about that initiative, I also thought it was a good time to take a look at what's happening here in this country, and what's going on with our communities struggle to get

    • 26 min
    Ask The D-Moms: Driving, Independence and "Holding Hope in our Hands"

    Ask The D-Moms: Driving, Independence and "Holding Hope in our Hands"

    Ask the D-moms is back! We’re tackling leaving kids home alone, keeping perspective when you’ve been in the diabetes community for a long time and driving with T1D. Moira’s daughter was behind the wheel before CGMs and Stacey's son just got his permit.
    Check out Stacey's new book: The World's Worst Diabetes Mom!
    Stacey mentions a blog post Moira wrote back in 2013 about hybrid closed loops 
    In Tell Me Something Good, an amazing way to raise awareness.  We’ll talk about the Run Across America – one man – from Disneyland to Disney World.. and its’ going on right now. More about Don Muchow from Diabetes Forecast Magazine (2019)
    Join the Diabetes Connections Facebook Group!
    This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
    Sign up for our newsletter here
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    Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
    -----
    Get the App and listen to Diabetes Connections wherever you go!
    Click here for iPhone      Click here for Android
    Episode Transcript: 
    Stacey Simms  0:00
    Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
     
    Announcer  0:21
    This is diabetes connections with Stacey Simms.
     
    Stacey Simms  0:27
    This week, ask the D moms is back. We're talking about leaving kids home alone. Keeping perspective when you've been around this community a long time and driving. Moira’s daughter was behind the wheel before CGM, which had one advantage:
     
    Moira McCarthy  0:42
    The good thing about a blood glucose meter and a driving teenager was I had proof whether she had or had not checked her blood. You are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them I don't know how else
     
    Stacey Simms  1:01
    I have an idea.
    You'll hear what my idea for kids with CGM is. It's something they can do before they buckle up in Tell me something good an amazing way to raise awareness. We'll talk about the run across America. One man going from Disneyland to Disney World. It's going on right now.
    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 Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. Hello to new listeners from Maine. I spent this past weekend in South Portland, Maine, talking to the PPODS. I love that name. Parents and providers of diabetic children. It's got a little logo with peas in a pod. Very cute stuff. Now I'm taking a little bit of a chance saying I was in Maine this weekend because as you know, I do tape this podcast a couple of days in advance. And as I'm getting ready to go to Maine right now Actually, it looks like there's some snow in the forecast. So fingers crossed, that all goes well, and that my plane takes off on time, and that I wear the correct footwear. You know, I used to live in Syracuse, New York. I'm from New York, and I lived in upstate for 10 years. I had all sorts of boots and coats, but I moved to Charlotte 20 years ago. Most of that stuff is long gone. So I was really hoping for Sunny dry weather for main. But it looks like that is not to be so yes, I'll be posting on social media about how it goes. But assuming all as well, I make it there and back with no delays. Fingers crossed. I'm sure it'll be a great time. And of course as you're listening, it was a great time.
    It's one of those funny things that I thought about a lot especially when my kids were younger about the differences raising kids in the south and in the north. M

    • 42 min
    Minisode #6: Whose Graph Is It Anyway? (A D-Parent's Struggle)

    Minisode #6: Whose Graph Is It Anyway? (A D-Parent's Struggle)

    Watch your language! That's what Stacey is trying to tell herself this week. When you're a parent of a child with a chronic condition, it's hard not to say things like "our diabetes" and "our CGM graph." But it's not "ours" exactly, so how do we better talk about this?
    Check out Stacey's new book: The World's Worst Diabetes Mom!
    Stacey also shares her frustration as she finds herself falling into the trap of perfect numbers and trends. While her and Benny's experience with Control IQ has been wonderful so far, it's also bringing back some of that perfection trap she thought she'd left behind.
    Join the Diabetes Connections Facebook Group!
    Sign up for our newsletter here
    -----
    Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
    -----
    Get the App and listen to Diabetes Connections wherever you go!
    Click here for iPhone      Click here for Android
    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 as a paperback eBook and audiobook. Learn more at Amazon or diabetes dash connections.com.
     
    Announcer  0:15
    This is diabetes connections with Stacey Sims.
     
    Stacey Simms  0:26
    Welcome to another week of the show. I am so glad to have you here! This is one of our minisodes the shorter episodes that have become sort of the editorial page. If you look at the podcast as a newscast, as I often do. That's my background. I'm a broadcaster local radio and television for many, many years before I started the podcast. So the Tuesday episodes which runs longer and usually have an interview with a newsmaker. That's the news. And then these episodes have kind of become the editorial. And this week, instead of the headline stop doing this or think about before you do that, which I've been Doing a lot lately. I'm going to talk about why I think what I'm doing is wrong. And maybe you could help me with that. I know I'm not alone. But I'm going to tell you straight up here. I don't really have the answer for what I'm going to talk about today. And this is really about parents. But I'm hoping that if you're an adult with type one, you will listen to this as well. Maybe it'll sound familiar to you, maybe your experience can help us.
    So this is all about my struggle, to, in a nutshell, stop thinking about it as my diabetes. It's not I know this in my brain. My son has type one diabetes, he was diagnosed right before he was two. We have been living with this for 13 years. And sure, my family is affected by diabetes. My family has to deal with diabetes, but my son HAS diabetes. And I'm kind of exaggerating, but you'll get a better idea in a minute why I'm saying it in such strong terms, because I know this is not helpful. So I'm going to tell you a story. This story happened in December, a couple of weeks before we got control IQ, the new hybrid closed loop system from Tandem. It does tie in, I'm going to tell you about our experience with control IQ, and then how it relates to all of this.
    If you've seen me talk or you read the book, you know that I'm really fighting against this pressure for perfection. And I think and it makes me laugh that a lot of people like I was just in Raleigh this past weekend talking to parents about this. A lot of people think that I now have this down pat that I know, that I that I am perfect at not being perfect. And I think what's really funny is, it never ends, right. There's no finish line to parenting, where you're like, Whoa, great job. I'm, I'm all set. right good for me. I did it. I mean, there are big milestones, like college and when your kid moves out permanently, but I really don't think that there's a point at which we can say, that's it. So we're all trying to improve. An

    • 16 min
    What Is Monogenetic Diabetes & Why Should You Care?

    What Is Monogenetic Diabetes & Why Should You Care?

    This week.. what is monogenetic diabetes and why should we – on a mainly type 1 diabetes podcast – care about it? The majority of people with monogenic are misdiagnosed as type 1. People like Kristin Skiados who thought she’d lived with type 1 for 38 years and her daughter Ava, was also misdiagnosed.
    MODY Quiz - Probability Calculator 
    We’ll talk about how this could happen, what it means for the rest of us and what monogentic or MODY is all about.
    Check out Stacey's new book: The World's Worst Diabetes Mom!
    In Tell Me Something Good, how a little sister’s diagnosis changed a sibling's outlook and career..
    And what the heck is a diabetes merit badge? We’ve got em! (Find out more here)
    This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
    Join the Diabetes Connections Facebook Group!
    Sign up for our newsletter here
    -----
    Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
    -----
    Get the App and listen to Diabetes Connections wherever you go!
    Click here for iPhone      Click here for Android
    Episode transcript (rough transcript, please forgive grammar, spelling, punctuation) 
    Stacey Simms  0:00
    Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
     
    Announcer  0:21
    This is diabetes connections with Stacey Simms.
     
    Stacey Simms  0:27
    This week, what is monogenetic diabetes? And why should we on a mainly type 1 diabetes podcast care about it? Because the majority of people with monogenetics are misdiagnosed. people like Kristin Skiados who thought she was living with type one for 38 years.
     
    Kristin Skiados  0:44
    It really was a phone call that was the answer to a new life. And it was probably the first time that I was speechless on the phone and the fact that That this meant there was a possibility to not be on insulin was just amazing
     
    Stacey Simms  1:06
    Kristin’s daughter was also misdiagnosed. We'll talk about how this could happen, what it means for the rest of us and what might have genetic or MODY is all about in Tell me something good. How a little sister's diagnosis changed a sibling’s outlook and career plans. And what the heck is a diabetes merit badge? I got them.
    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 am so glad to have you along here on Diabetes Connections. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host Stacey Simms. My son was diagnosed 13 years ago right before he turned two I don't have diabetes. I do have a background in broadcasting and that is how you get the podcast. Hello to any new people joining us from the Raleigh Durham, North Carolina area. As this podcast is airing, I am just back from the JDRF type one nation summit in that area and thrilled to meet many new people and see some familiar faces. Not too long a trip for me. Of course, I'm in the Charlotte, North Carolina area, but always fun to go to those conferences, see people in person, talk about the show, talk about the book, the world's worst diabetes mom, and make those connections that I care so much about.
    And this is the second time that I have taken the diabetes merit badges on the road. I am so excited about this idea. This came to be I guess it's one of those ideas that came kind of suddenly but then was also years in the making. I have always thought that we deserve like a gold sticker or a huzzah! Or hurray when something goes right in diabetes land. You know,The

    • 1 hr
    Minisode #5 - Stop Posting Sick Day Photos of Your Kids!

    Minisode #5 - Stop Posting Sick Day Photos of Your Kids!

    Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress.
    What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids.
    Links referred to in the episode can be found in the transcription 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
    -----
    Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
    -----
    Get the App and listen to Diabetes Connections wherever you go!
    Click here for iPhone      Click here for Android
    Beta Transcription - please excuse grammar, spelling & punctuation
    Stacey Simms 0:28
    Welcome to a minisode of diabetes connections, one of our shorter episodes where I share some thoughts on one topic of diabetes management. I'm your host Stacey Simms, and my son was diagnosed 13 years ago just before he turned two.
    Before I jump into this week's topic, which I really feel pretty strongly about. I want to give a thank you to Diabetes Forecast Magazine. We are in their January February issue as one of the top trending items for winter. It just cracked me up. When I opened, I get the magazine. So when I opened it, I laughed only because of the picture that they shared. I knew it was coming, they had asked to review it in the fall, but I didn't know that there would be a full picture. And I certainly didn't know it would be so funny. It's a woman, you know, with the book over her face, kind of like, Oh my god, I can't believe I'm reading this. And I can't believe what I'm reading.
    But the funniest thing is that a lot of people thought that woman was me. It's not, but I can kind of see it. And it's so funny to think that even with social media and everything else, because this is basically a radio show, you probably have a picture in your head of what I look like, I always do that for people on the radio, and then you meet them and you're like, that's not what I thought they would look like at all. So if I get a chance to meet you, you can tell me what you thought I looked like. But anyway, thank you so much diabetes forecast. I really appreciate that. And thank you to everybody who's sharing the book. After you listen to the show today. You might say I really am the worst. But I really do feel very strongly about this.
    So let's talk about it. This topic of sharing photographs, of children in the hospital, sick day photos. This is something that is very sensitive to a lot of people. But let's talk about why I truly think it is a bad idea to share what I'm going to call these photos of your child in distress. So for the purpose of this episode, let's say children in distress includes hospital photos, Sick day photos, a child upset about aspects of care, like getting a shot or an inset. Any photo that shows your child in a moment of distress or pain or hurt. We see these all the time on social media, a casual post of a tough night of lows, you know, and a sleeping child with a juice box next to them or something maybe a little stronger. You know, we're in the ER today couldn't keep fluids down and needed hydration. And then you see the child miserable in the hospital bed. We see these photos used by organizations and news outlets, Beyond Type 1, JDRF, Diabetes Daily. I am affiliated with a lot of these groups in terms of sharing content, right? You've seen - they'll post my stuff, I'll post their stuff. But I think it's important to call it when I see it. And every time I see it, I just cringe.

    • 19 min
    DiabetesWise - A Consumer Reports for Diabetes Technology

    DiabetesWise - A Consumer Reports for Diabetes Technology

    Choosing your diabetes technology can be complicated. Wouldn’t it be nice if there was sort of a Consumer Reports for pumps and CGMs? We found out about Diabetes Wise from people who know it’s about more than the hardware.
    Check out Stacey's new book: The World's Worst Diabetes Mom!
    Stacey talks with Dr. Korey Hood who lives with type 1 and is with Stanford University as well as Laurel Koester, with the Helmsley Charitable Trust. Together, these two groups created Diabetes Wise. Stacey, Korey & Laurel talk about how it works and  why it’s needed.
    Stacey spoke to Korey on a previous episode about diabetes gear and mental health. Find that episode homepage here. 
    Join the Diabetes Connections Facebook Group!
    In Tell Me Something Good – the greatest game of Marco Polo every played.. and Stacey finds her diabetes doppleganger.
    This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
     
    Sign up for our newsletter here
    -----
    Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
    -----
    Get the App and listen to Diabetes Connections wherever you go!
    Click here for iPhone      Click here for Android
     
    Episode transcription (it's a rough transcript, please excuse grammar, spelling & punctuation) 
     
    Stacey Simms  0:00
    Diabetes Connections is brought to you by one drop treated 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  0:17
    This is Diabetes Connections with Stacey Sims.
     
    Stacey Simms  0:23
    This week, choosing your diabetes technology can be complicated. Wouldn't it be nice if there was sort of a Consumer Reports for pump and CGMs? Enter DiabetesWise from people who know it's about more than the hardware,
     
    Korey Hood  0:38
    there's the physical side to wearing it, then there's this mental burden that is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is the distractions and the potential workaround. So you have to come up with in these various settings, whether it's school work, family relationships,
     
    Stacey Simms  0:56
    that's Korey Hood, who lives with type one. He's part of the Team at Stanford who along with the healthy trust created DiabetesWise, we'll talk about what it is how it works and why it is needed. In Tell me something good, the greatest game of Marco Polo ever played, and I find my diabetes doppelganger. 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 Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. And I'm really excited about what we're talking about today. Because I don't know about you. But when we went to pick out our pump for Benny, and I'll tell the story during the interview, it was just overwhelming. And while our educator was fantastic, I really wish we'd had just something to kind of compare and contrast the different types of tech like now exists with DiabetesWise. So we'll get to that and the interview in just a couple of minutes.
    But you know, I get so many great things emails and messages and I'm so terrible at reading reviews and sharing this stuff with you. You know, there's all sorts of techniques and strategies for getting people to share more reviews and email you more in blah blah blah. I'm just terrible at that. But I have to share this one with you. Because it was like getting a message, like a message in a bottle from a time machine. So here's what happened. Casey messaged me. “Hi, Stacey. I'm sure you get messages like this one all day every day, but I couldn't resist reaching out. I wanted to rea

    • 43 min

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