#722 Jesse Was Here Part II
Michelle has been a strong advocate in the “d” world since her son, Jesse, was diagnosed with Type 1 diabetes in 2000 at the age of 3. After the sudden loss of her son at the age of 13, she continues to advocate and educate.
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Scott Benner 0:00
Hello friends, and welcome to episode 722 of the Juicebox Podcast.
Today's show features a returning guest. Michelle was on the show back in 2016. On episode 90 She was here at that time to discuss the loss of her son Jesse, in an episode called Jessie was here. A few years ago, Michelle wrote a book also called Jessie was here from the perspective of a grieving mother. And she's back today to catch up with us. Tell us about a new books you'll have coming out pretty soon and all the rest. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you have type one diabetes and are a US resident or are the caregiver of a type one, please go to T one D exchange.org. Forward slash juicebox. To take the survey, that's all you have to do. Join your registry take the survey takes fewer than 10 minutes you're helping people with type one diabetes, you're supporting the show, and you're possibly helping yourself. P one D exchange.org. Forward slash juicebox.
This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor. Find out more about the Dexcom g six@dexcom.com. Forward slash juice box you may be eligible for a free 10 day trial of the Dexcom GS six. The episode is also sponsored today by Ian pen from Medtronic diabetes, head over to in pen today.com To learn more about that insulin pen that talks to that app that gives you a lot of the functionality that people with an insulin pump get all that from a pen. That's right in pen today.com
Michelle Bauer (Alswager) 2:11
I am Michelle Bower formerly Michelle all swagger and I am Jessie all swaggers mom.
Scott Benner 2:18
Do you remember what episode number you were on the first time because I can look?
Michelle Bauer (Alswager) 2:22
Oh my gosh, it was it. 31 or 71? I know I looked when I read listened to it recently.
Scott Benner 2:28
I'm gonna find out right now. I have access to this as you would hope. You were episode 99. December 13 2016. I put that up.
Michelle Bauer (Alswager) 2:43
- So not that long ago? Well, no, I guess that is six years ago. Lots have changed in 66 years.
Scott Benner 2:52
What has changed?
Michelle Bauer (Alswager) 2:54
Well, I think the last time I talked to you I was working at right was my writing. Yeah, writing on insulin. So I was helping with the ski, snowboard Mount Bike camps all over the world. And I wanted to stay in diabetes and David Edelman, who you may or may not know whose CEO, he was CEO of diabetes daily, kind of took me under his wing and said, Hey, do you want to sell the advertising on our website was like, Yeah, sure. So I've been there for four years, still working in diabetes. But we sold diabetes daily, actually, to everyday health. And so now we're just drivable, which is fully market research. So we do all the market research for all the big med tech tech, you know, to see what's coming down the pipeline. That's interesting.
Scott Benner 3:36
I met David, I've met David a couple of times, actually. And he's, that's such an interesting story, right? Because didn't he start diabetes daily with his wife who was type one? He did a divorce, and he kept the website going, is that do I have that story? Right?
Michelle Bauer (Alswager) 3:54
You haven't absolutely right. I believe it was 2005 when he just wanted to put a community together. And then, you know, years later, you know, he's remarried. He's on child number three with his wife, Carrie. And this company has grown like by leaps and bounds since I started. So what I thought was going to be, you know, working with all the Abbott's and tandems of the world selling advertising now I'm working with them on market research.
Scott Benner 4:20
Oh, that's pretty interesting. No kidding. I, I should have. I should have been talking to you over the last six years because the way I got my advertising is just, it's all by luck. I got cold, like I cold emailed people. In the beginning. I was like, Hey, I have a podcast, you should buy an ad. They got back to me. And I was like, Oh, my numbers must be okay.
Michelle Bauer (Alswager) 4:40
Yeah, I mean, if you have good numbers, I'm happy to help you with some of that thought process because I definitely do know a little about that.
Scott Benner 4:47
Tell you, Michelle, I don't know everything that I'm doing right now is just working by luck. So that's funny, but Okay, so to catch people up, and you know, it's been a long time And people might not know. But back in. I mean, a long time ago now I guess you you had a child who had type one diabetes, Jessie.
Michelle Bauer (Alswager) 5:10
Yes. So Jessie was diagnosed with type one diabetes when he was three back in 2000. I kind of dropped everything to just immerse myself in the world of diabetes for him. You know, whether it was skiing, snowboarding, being a director of JDRF, you know, just kind of getting really involved in, and then my son when he reached 13, said, Mom, stop talking about diabetes. I'm so sick of talking about it. So I went to work somewhere else for a while. And then action on February 3 2010. At the age of 13, is when Jesse passed away from DK, and 12 years,
Scott Benner 5:42
it's been 12 years since he passed. Yes. And how long has it been since he was diagnosed? Do you say 22 years? 22 years? Wow,
Michelle Bauer (Alswager) 5:51
he would be 25 right now,
Scott Benner 5:52
right now he would be? Yes. Okay. That's crazy. I just I'm drawn to ask you, if telling me that or saying that to someone? Does it stir the same emotions as it always has? Or does it morph over time?
Michelle Bauer (Alswager) 6:12
That's a great question. It depends on who I'm talking to. You know, I, you know, since I last spoke with you, you know, I've done a lot of public speaking and right before COVID hit, there was a between beyond type one and JDRF, there was the talk of having me speak at the summits. And then COVID happened and all the chapters closed down. And you know, that went in a different direction. You know, just yesterday, I went for a bike ride, I did a bike ride with the JDRF group. And there was a young girl named Kaylee who I had never met. And of course, she's like, Oh, what's your connection to diabetes? And I pointed to her Jersey, where it says mile 23, which is a mile of silence, the startup projesi. That's for anyone who's lost someone to type one. And she choked up. And so when it's like that, I hate telling them because I know it brings out emotion for them because they have the disease themselves. But, you know, it comes up in almost every client call, I have to be candid, you know, I say, Oh, I've been involved in diabetes for my adult life. And they're like, Oh, how's your son now? Or how old is your son now? So you just kind of roll with it after 12 years, I think. Yeah.
Scott Benner 7:16
Yeah. Do you have other children?
Michelle Bauer (Alswager) 7:19
I do. I have. So I have a stepdaughter from a previous marriage. She's actually 41. And then my daughter just got married. She's 28. Jesse would be 25. And then Joey, the baby is turning 22 In a couple of weeks. And I actually got married in 2018. So that's where the power came in. And I have two really great stepkids. Claudia and Alex, who are 23 and
Scott Benner 7:46
- That's a big family. That's what it is. Yeah. So children who are who are blood related to Jesse? There are some in there, right? Yep. To he was middle. And not that this matters. But just for context. You were with Jesse's father. At the time of his diagnosis or No,
Michelle Bauer (Alswager) 8:09
no, at the time of diagnosis. Yes, I was actually. He was he was three and I was pregnant with my now Joey, who's turning 22. I was four months pregnant and married to Tom. When Jesse passed, we were divorced. However, we remained friends. And in fact, I would I would say, losing Jesse has brought us actually quite close. So we go, we go to his bar sometimes for happy hour Packer games,
Scott Benner 8:34
stuff like that. It's nice. Other kids have any autoimmune disorders?
Michelle Bauer (Alswager) 8:41
No, and knocking on some wood, right? They're still young. But no, not none. None have surfaced. I mean, they've been my inspiration of, you know, getting the first book written. But I'm, you know, the start of a second book for sibling grief is just starting with interviews.
Scott Benner 8:56
Okay. So this is a book you're putting together what you're building it right now.
Michelle Bauer (Alswager) 9:00
Yeah, yeah, to piggyback off the Jesse was here book, which is, you know, the whole story of, you know, the, the first year of grief, and then at five years and 10 years of what that looks like, the real feelings, you know, and I just, I just realized with all these parents that I've connected with, you know, I know about their kids and the struggles that they have. And so, I've been putting together a list and I have about 25 people who lost a sibling, whether they lost them, you know, when they were nine years old, or maybe they were an adult and lost their sibling, just just, you know, kind of how they feel and how they managed and questions that might have come up for them. Over the years.
Scott Benner 9:36
Do you find the grief that stems from loss is any different than grief that comes from other things? Like, you know, be just being diagnosed, for example, like, do they do they share traits?
Michelle Bauer (Alswager) 9:49
Yeah, that's a great question, too. You know, in my book, I actually talked about it like I the day Jesse was diagnosed. I thought it was the worst day of my life, right, like and so I can relate to any parent who's getting a newly diagnosed child. I know it's the worst day of their life, I can tell you the day of loss and the 12 years that followed, don't compare. It's like it's such a black hole, and hard to explain, nor do I want anyone to understand it. Because who wants them in their shoes? Right? Like, one of my very good friends just in November last year, son, Cade to fentanyl poisoning. And, you know, she called me up and said, I'm in your shoes, I had no idea what it's like to really stand in your shoes, you know, and now she does, unfortunately. So it's definitely different.
Scott Benner 10:37
I just interviewed a woman recently who lost her son to heroin and, and other addictions. And it's just, I find it to be an unfathomable discussion. Like, I don't know how to even I don't even know how to relate, I just all I can do is ask questions that pop up. Because, you know, usually in the course of one of these conversations, I'll end up saying, like, oh, like something similar, like that happened to me. And you kind of tried to find a, you know, a level ground where you can talk through things, but this is just one that's, you know, it's out on the edge.
Michelle Bauer (Alswager) 11:08
Yeah, I mean, the whole common ground, you know, like, we all kind of say the same things about like, like, I talked about it, my book about things not to say I have a chapter called, I don't care that your cat died. And it's just about all the like, kind of weird things people said to me over the years. You know, like, my cat had diabetes, I was like, great, that has nothing to do with my son. But in the end, what my the information I give back to people is, we know that you don't say it to be weird, you're probably just fishing for anything possible to relate to your point. So you know, we're forgiving on it. But yeah, sometimes just saying, I don't know what to say, is a really good thing to say.
Scott Benner 11:47
Yeah, that's what I find I, I've actually come down to just like, I go, well, that sucks. Because I don't know what what could I say that would bring you any kind of comfort? So it begs the question, then, what does bring comfort at that point? Because what what stops you from? I mean, everybody listening, who has no context is thinking I couldn't do that, that would destroy me, etc. But here you are, you're not destroyed. So what are the steps you took to avoid this being the end of your of the end of you as well?
Michelle Bauer (Alswager) 12:19
Yeah, also a really great question, Scott. You know, it's, it's one day at a time, it's Evan flow, it's everything you kind of hear people say about grief that you got to you don't have a choice, you're still going to wake up tomorrow. Right? And I would say, for me, in the early days, it was my kids, right? Like, I had two other kids that I had that put on a face and, and you know, be okay, for them and with them. You know, this is kind of how it goes, you know, and I say in my book, that I was never going to take another family photo, I was never going to send a Christmas card, just because my family wasn't intact, right? Like, never would it be intact. And I said that it may be your one, set it again at your foreign the book, and then, you know, flash forward 2018 The day I got married, you know, we took our first family photo. And here we are, you know, 12 years later, and I'm pondering that this year might be the year to put out a Christmas card.
Scott Benner 13:16
So time,
Michelle Bauer (Alswager) 13:19
time, and you have to allow yourself joy. And I think, you know, the group we put together at beyond type one back when Sarah Lucas was CEO, and then Tom, we put together Jesse was here. And there's another place I find a lot of comfort is it's all these other parents who've lost a child to type one that can kind of commiserate or talk about happy moments or, you know, how, how they're managing their guilt on that day. Maybe?
Scott Benner 13:48
You know, since you brought them up, let me ask you so I have a tiny bit of knowledge here. Not very much. So Tom passed away unexpectedly. Were you working together when that happened?
Michelle Bauer (Alswager) 13:57
Yeah, Tom and I were very close friends, actually. Tom and I had a habit of, you know, when something got controversial, he saved got a minute. And then we'd get on the phone and have a virtual Happy Hour and just vent for, you know, an hour and have some fun. Yeah, he was only 33. He passed away in his hotel room in when he was working in New York, and I don't have any information. I wish I had information, but I don't know what happened.
Scott Benner 14:25
So I didn't ask you to ask about him. I asked to ask you. What's it like when you experience a loss again? Oh, I
Michelle Bauer (Alswager) 14:33
gotcha. Yeah, well, I mean, that is a great question. It was probably the closest person I lost since Jesse you know, that I spent a lot of time with Yeah, it brings a lot to the surface a lot of why and you know, yeah, I mean, when they're close to it hurts. But yet, you know, my parent loss. I know this is gonna sound really weird, but like it was, I think more doable, because I had already lost Jessie like I already lost a child. So like, I kind of know, the depth of pain, at least that was chronological. And maybe with Tom it just hurt because he was still young. Right?
Scott Benner 15:12
Well, it's such an interesting like to keep talking for about this for a second Sarah, but I interviewed once to say, I know it would be a fallacy it but I mean, I, I talked to her for an hour once. And then she had significant health issues, and that she's like, Listen, you know, for for a couple of hours to a few days. But I was rocked by that a little bit just because I had met her. And it seemed out of the blue and she was young, etc. And it it it impacted my life for a couple of days, not nearly the way it would you or somebody who knew her well. But that's what made me ask because because I I'm at best tangentially related to this person. I hear that news. And it's shocking to me. And I was just wondering if, you know, if you had similar experiences, just well, death engine,
Michelle Bauer (Alswager) 16:03
I can tell you what happens to me with death. You know, when when Sarah Lucas, you know, after her brain aneurysm and her retirement from beyond type one, she lost her husband, Don, suddenly, and it's like, my first instinct to anybody is I wrote a book. It's about grief, can I send you a copy of my book, it's just like a knee jerk reaction that I have with everybody. Like, you know, we have a house, like a cabin up on a lake. And we spend a lot of time there. And it's funny, because this little bar has copies of my book on the shelf blocker because I'll get to talking to somebody and they're like, Oh, I just lost my wife. And this happened. And the bartender will come forward and go, here's a book. That's I can't help myself. Like, I just, I just, it's my goal was just to help other people through their pain and know, they're not the only ones that feel everything, that feeling.
Scott Benner 16:53
So now I feel like I've, for the first time have an experience that's commensurate to yours. Because when I feel when I hear people talking about their struggles with diabetes, I'll say to them, like, I have this collection of episodes that will help you like I know, I know, in my heart, they will help you or at least they have a really great chance of helping, and it feels like a compulsion to explain it to share it with them. Yeah,
Michelle Bauer (Alswager) 17:15
yeah, absolutely. That's just that's that's been my reaction ever since he passed is just like, How can I help people with my experience?
Scott Benner 17:22
Right, right now that's really something okay, hold on. I got over a little tiny bit overwhelmed. Michelle, give me a half a second. i In fairness, the people listening know this, I have sometimes trouble with my iron levels. It's a little low right now. So I'm closer to crying than I usually would be in this situation. So give me a half a second. Anyway, I'm getting an iron infusion next week, and I'll be okay. But, but it's, it's funny, when when it dips down, I go, like in two different directions. Like you can either make me angry quick, more quickly, for no reason. Or I get a little weepy if something sad comes up. So the whole day getting ready to talk to you. I thought, I hope I'm okay. Like, I don't like act like just in a way that isn't appropriate. But I'm okay, I'm doing alright. Well,
Michelle Bauer (Alswager) 18:11
you won't be the first person I made cry this week.
Scott Benner 18:15
Better, I gotta tell you something. Michelle. That's usually my line. Just so you know. I've been making ladies on the internet cry for years. But about diabetes, and some guys. So you so your first book has been out for quite some time. Right? Am I right?
Michelle Bauer (Alswager) 18:33
If it was slated to publish in April of 2020. And as you and I both know, that's when COVID smacked everybody. But we the idea was JDRF was gonna have me on and like I said, and and then to be able to go into libraries and and do book talks and grief groups and things like that, which, obviously, we just continued to release it and get it out there. But yeah, it just went into another revision, which just got loaded up on Amazon. And now we have an e book.
Scott Benner 19:01
Oh, cool. So I'm looking at it now. Just it's Oh, that's Oh, that's interesting. So it came out kind of 2020. But you did the revision more recently, because I see the date on the Kindle is is newer.
Michelle Bauer (Alswager) 19:13
Yeah. And it's still in the process of changing over the book cover. We changed the book cover. Because you know, right now, you know, it's a picture. It's a real picture of my son with his thumbs up walking away. It was the last family vacation, it felt really appropriate for the book. But we kind of felt my publisher felt well, maybe p only people who have a child with diabetes are reading it, or maybe people who lost a teenager think it's relevant because of the cover. So we changed it to be a little bit more general because the the notes I get from people like on LinkedIn, people who've picked up the book and read it. I mean, it's not just people who've lost, you know, a teenage boy, it's someone who kept miscarrying or somebody who lost a child at age one or, you know, someone who lost a sibling. It's really been interesting. So we just wanted it to feel more are like this isn't just a story about what it feels like to lose a teenage boy, you know, I know that other people benefit
Scott Benner 20:15
let's talk about the Dexcom G six continuous glucose monitor for a moment, shall we? dexcom.com forward slash juice box. Classic spelling on juice box all one word, the Dexcom G six continuous glucose monitor. Listen, I don't need this website. My daughter has been using a Dexcom oh gosh, for a really, really long time. I said, oh gosh, because I can't I can't even think of a time when she didn't have it anymore. How long it's been. I've picked up my phone by the way. And I'm going to tell you a little story about how we use Dexcom in just the past two hours. So Arden left a lunch today she went out to lunch, she came back and her blood sugar was a little high around 150. But she wanted a piece of cheesecake. We made her a cheesecake here at the house. Actually Arden and I made it it actually came out really good. We were really proud of our stuff that has nothing to do with the Dexcom ad. Nevertheless, we needed to Bolus for this cheesecake in a way that would not let a high blood sugar happen later. But you've got this 150 ish blood sugar and what are you supposed to do? Right? Well, here's what we did. We made a Bolus for the cheesecake that also incorporated a correction for the 150. All right, these are our results and yours may vary. But we watched the Dexcom as her blood sugar decreased. And then when we got to right where we thought was the right spot, which by the way for us in this scenario was 117 Diagonal down. Because yes, the Dexcom shows you not just the direction but the speed. It's falling. And so that diagonal arrow tells you something about the speed. But I digress. We cut the cheesecakes served it up. And it is now let me give you an exact number I can look right on the graph. It is now let's see that happened at 420. And it is 547 now so it was like an hour and 15 minutes ago, right. Guess Arden's blood sugar right now. And the cheesecake is long been eaten since now. Blood sugar is 78. That is an example of how we use the speed and direction and number that Dexcom gives us to make a good Bolus. And there are many other examples and ways that I'm sure you will find to use Dexcom for you dexcom.com forward slash juicebox. When you get there, if you try to leave the webpage, it might say to you are you interested in a free Dexcom G six sample? Well, if it says that just click on Request to sample. It's that easy. The N pen from Medtronic diabetes is a reusable smart pen that uses Bluetooth technology to send dose information to a mobile app. That mobile app will be on your cellular device. Do people even say that any more cellular device No, they just say phone at this point anyway, not the point. Anyway, here we go. And back to it. When you have the M pen, it's going to help take some of the mental math out of your diabetes management by offering dose calculations and tracking the in pen for Medtronic diabetes is an insulin pen. It's everything you expect from an insulin pen. But then that app it gives you current glucose values meal history, dose history and activity log reports glucose history active insulin remaining and a dosing calculator. If you're ready to try it, just scroll down at ink pen today.com and fill out the very short form and hit submit. If you want to know more continue to scroll and learn more about the ink pen. Head over today because some people may be eligible to get the M pen for as little as $35. In pen today.com in pen requires prescription and settings from your health care provider, you must use proper settings and follow the instructions as directed, where you could experience high or low blood glucose levels. For more safety information visit Impend today.com. I had so such a similar experience. I wrote a book a long time ago now. And it was about being a stay at home dad. But there's a chapter or two towards the end. That's about Ardens diabetes, but the book is far and away. 95% has nothing to do with type one. And when I hear from people who have some sort of a connection to type one who have read it, they feel like the books about diabetes. It's funny, it's so interesting. And then people who don't have a connection to diabetes are like Oh, I was interesting to learn something about diabetes at the end of the book. It's very interesting to see what people connect with I guess and and then therefore how they interpret it. And I saw I take your point. So
Michelle Bauer (Alswager) 24:59
yeah, I mean some then that made me think of that I think is pretty great about 2022. There's not a lot that's great about 2022. But is that people's resources are so much better than even when Jesse passed in 2010, as far as me connecting with other people who, who shared what happened to me. And what I mean by that is, you know, I lost my son to type one diabetes, I think it helps me so much that I have these people that lost their child that type one, so it's very relevant. Whereas I may not feel as connected as someone who had a miscarriage or someone who lost a child to suicide. Right. So now we have this ability to talk to people who truly are sharing the exact grief we have.
Scott Benner 25:40
Yeah, no, it's the podcast has taught me that, honestly. Because prior to the podcast in 2015, I would write something online and get a couple of notes. And people were like, Oh, your blog really helps me or I found this interesting or helpful. Thank you like that kind of thing. I now know, over exaggeration, I hear from 10 to 15 people a day now. So just the ability to share information in a different way, has opened up. And you know, like you're saying, in this time, where everybody kind of got stuck in their house for a second. Even the people who are probably not using the internet so much, are like, well, let me see if I can't see more of the world here. Since I'm stuck in my bedroom, or wherever I am. You know what I mean? I just think it's, it's, it's and it's really valuable, like I getting, you know, you can have this book. And if you can't get it the people. It doesn't exist, really, you know what I mean? You have to be able to put it in their hands. So who would you say it's for the book?
Michelle Bauer (Alswager) 26:42
The book? Yeah, I think it's anyone who's experiencing some kind of grief, or anyone who wants to help someone through their grief. I think, like, I've heard from a lot of people whose like, maybe their friends child died. They read the book, and it helped them kind of see inside their heads, I think. I think like I said, like, you know, I know people have stayed at my cabin, like you will we rent out our cabin. And now she's a newscaster, and she had a lot of miscarriages. And she just happened to pick up the book and read it. And she was like, I had no idea I had not dealt with my grief, completely. She's like I sobbed through your whole book. She's like, I just nodded and was like, that's so helpful, like someone else felt my pain, right? So I think it's anyone who needs closure to their grief, and just needs, you know, to feel like to nod with somebody, right? And so yeah, I was in target. And I saw a cute little four year old boy in a cart. And it made me mad because he looked just like my son, and I miss my son, and it's life's unfair that you get to keep us on, right. So you know, anybody who's experiencing grief, I know people who just lost a parent, like, it's always I try to explain it that it's always as good as like your worst loss. Meaning, if the worst thing you've ever lost in your life is a cat, right? That's only lost, you don't know any other kind of pain of grief, right? And then maybe you lose your parents. That seems like the most painful, right? So it can be anybody's grief, even a pet.
Scott Benner 28:12
It's why I tell people that you can't you can't judge your thing against other people's stuff. Because the worst thing that's ever happened to you is the worst thing that's ever happened to you. So, you know, you can't say, Well, you know, I have diabetes that's worse than this, or, you know, I have diabetes that's better than that. Because it's, you know, the next person might I was interviewing somebody recently, and their lives were just going along, like nothing was wrong, you know, what I mean? Like things were going the way they expected and health was all great. And then all the sudden a thing happens. And it's a tragedy to them. Because their their level of expectation was different. And, you know, is it fair or not fair? Like, I don't know, that seems kind of arbitrary, you know, to say that, I mean, it would be nice if everybody got the same level of happiness and then fulfillment. But I mean, that's seems kind of unreasonable. But But I just again, I just really take your point that it's I don't know, like, it's not a thing you can put yourself in your shoes, but it is nice of you to be able to look up and understand like this is, you know, the example of the cat, like if it's, you know, if you're 25 years old, and your cat died, and it's the first thing you've lost, it's, it's pretty crazy.
Michelle Bauer (Alswager) 29:24
It's a major loss to you. Yeah, yeah. It's funny too, because, you know, most of most of the reviews I got on Amazon or, you know, the five star and really good nice write ups. And the people who complained were the ones that were like, I have a child with type one. And she doesn't tell me exactly what happened to him, and then gives me a lower rate. I was like, Well, the book wasn't about you finding out how exactly my son died. Even though I have a chapter. You know, a lot of people ask me exactly what happened and I don't normally share it because I try to explain. I don't want to go through that day again, ever. Like I don't want to relive that in my mind. I did it, just in reviewing my book like 10 times during revision until my publisher Dan, I'm like, I don't ever want to read that chapter again. Right? Like, I'm done with that chapter of my life and I thought worth revisiting. And so I always say to people, when they say, Well, what happened? And Michael, you're welcome to buy the book.
Scott Benner 30:18
I'm not saying it again. Yeah. You know, it's funny, through my experiences with people, my expectation there is that they want to reverse engineer your experience to stop it from happening to them.
Michelle Bauer (Alswager) 30:31
That's what yeah, they want to hear that I did something wrong, because that
Scott Benner 30:34
will make them feel like it's not possible. Yeah. So you know, excellent. Michelle, I, since you said it out loud. They, they want to know you did something wrong, so that they can have the belief that as long as they don't do something wrong, it'll be okay. Yeah, I mean, false comfort you try to give yourself when your kid has diabetes is using insulin.
Michelle Bauer (Alswager) 30:56
I mean, there's two things I've noticed the most about having it's maybe something more listeners hearing that have kids with type one is, number one, is DKA, is worse than going low in a lot of ways. Because people let their kids rock a 600 blood sugar and let them eat or drink a root beer. And I sit there and cringe and I'm like, your agency is going up and going up and going up. And then when something bad happens, it's going to happen real fast. So I've been doing a lot of education on DKA, because a great number of the parents that are finding me and Jesse was here at the Facebook group are losing their college aged kids to DKA. That's what I'm seeing more of the positive. And, you know, granted, I'm not a survey taker on the Facebook thing, but we're seeing less and less of people losing their kids and onset, which I applaud, it means we're getting the word out of warning signs and doctors know the warning signs. Otherwise, I'd be seeing a lot more people coming through our door, and it's less and less with those people.
Scott Benner 32:01
That's that is good to hear. It really is I that's something so kids go away to college, they either don't know how to manage themselves or decide not to, and their blood sugar's rise and rise and rise, and then they then the dka comes.
Michelle Bauer (Alswager) 32:18
Yeah, I mean, it's that burnout, right. 10 year mark, for a lot of people is a burnout. You know, you know, we got to put our mental health first for some of these kids that, you know, they got, you know, it helps them to deal with it. I mean, I know people whose kids are, you know, for three weeks not taking insulin and not testing, just because they want to feel normal, and they're at college. So the parents don't know what they're doing or not doing. I mean, luckily now they're CGM. But But yeah, I mean, it's these college kids, or these college kids that do die from DKA. They don't tell their roommates, they have type one diabetes. And it's a hidden, it's a hidden thing. So when they're acting funny or being weird, they're not. They're not saying hey, man, you gotta call your parents or, Hey, you gotta get to the hospital. They just think they have the flu or something.
Scott Benner 33:03
Right? Yeah. So that idea of I'll hide it, nobody will know. And I'll get through this. It's all I mean, whether it's not taking your insulin or not telling somebody about it, that scenario, it's all function of just trying to pretend it doesn't exist. Yeah, it is not something you can pretend
Michelle Bauer (Alswager) 33:18
away. That's for sure. And the other thing I find fascinating, even in like, you know, my current group of friends, I, you know, I'm very proud that I still stuck with all my type one word friends and ketones. I am flabbergasted at the number of adult friends I have that never test for ketones.
Scott Benner 33:37
So we tried to, we tried to like lay that out in the podcast, the best we can because there's there's a couple different ways to think about, like, if you're eating low carb, like you're using a certain lifestyle, you might see ketones in your diet, like in yourself no matter what, right? But ketones from not using insulin. That's different. And the one thing I find that confuses people a lot is that they don't think you could have ketones at an enraged number with which you absolutely ketones can exist whenever there's not insulin present. So if you're, I don't know, sick and your blood sugar won't go up, and you're afraid, well, I'm gonna get too low. So I'm gonna shut my insulin off here. And your blood sugar hangs in the 80s or the 90s. You think, oh, this is great. It's not great. You could still develop decay very quickly, too, because you've you've taken the insulin away.
Michelle Bauer (Alswager) 34:24
100% Yeah, exactly. Well, well said,
Scott Benner 34:28
well do my best to tell people and it's a it's an uphill battle sometimes because it is. It is one of those things like the the alternative is, you know, if you spike once the 200 and come back down an hour and a half, you probably don't have to check your ketones. And so you're trying to keep a balance between, you know, being aware and vigilant and not being so hyper vigilant that you're, you know, busy making yourself crazy in times when it isn't necessary. It's a it's a balancing act.
Michelle Bauer (Alswager) 34:57
It is. It is and you know, I mean Um, I have a friend who competes as a skier and she would go over to Austria and I kind of was her like diabetes mom to keep her motivated. And, you know, I'm like, she's like, I'm throwing up, I'm sick. When I'm in Austria, I don't want to go to the hospital. And I'm like, Lauren, you're rockin, you know, some pretty, pretty high ketones. As much as you don't want to be at the hospital, you need to be around around the right equipment. So
Scott Benner 35:24
yeah, sometimes you just have to stop and do the right thing. It sucks. And, you know, I listen, I went got a blood test this morning, before I talked to you, because I'm like, I know where I'm at. I know what I have to do. If I don't have this level of reading, the doctor is not going to help me. It's going to take some days to put into practice into into motion, like, let me just go do this thing. And it's important to put yourself first and are the people you're helping and I guess we're I guess we're people. I mean, again, you told the story about the skier. It feels a lot like the idea of people who go away to school who are just like, like, let me just push this on the backburner. I just want to pretend it doesn't exist. You know, no, no, I understand. Let me just switch gears for a second. So you said you were at diabetes daily, which then eventually became, which got sold, and then the business moved to thrival? Is that right?
Michelle Bauer (Alswager) 36:17
Yeah, that's always been somewhat, the parent company is thrival. So we just got rid of the website, part of what we do. So now we're a panel of, I mean, as far as it relates to diabetes, we have over 50,000 people living with type one and type two diabetes in the US on our panel doing surveys and interviews for every company you can think of. So it's been it's been a ride, like, it's, it's a lot of fun.
Scott Benner 36:42
So when a company is thinking of making a new thing, or changing something, or adding a feature, and they want to hear from people who have diabetes, they can send you a survey that you can then send out to the people who are in your group.
Michelle Bauer (Alswager) 36:54
Yeah, so um, that's exactly what happens is a company will reach out to us and say, Hey, we have needs for the coming year. And maybe I work with marketing teams that are trying to figure out how to get the messaging, right. I work with the products where, you know, maybe they send the product to, to the person and they get to test it for two weeks or like, think of a telehealth app. Maybe they download the telehealth app. And then they give feedback over an interview and say, How did you like it? Did you find it easy to you know, What didn't you like? And so those are the product managers. And then there's some ones that are bringing product. You know, it hasn't come to market yet. Right? Like maybe it's a new wearable, you know, that right now is in France, but it's coming to the US. So they just hit me up if they want some surveys done in diabetes, we actually do mental health and a few other areas now, but But yeah, that's what we're doing.
Scott Benner 37:42
That's interesting. It's a people who listen to the podcast also are people who run these companies. So I thought I would just like, you know, let's just say it there for a second. I appreciate it. Listen, I You're a friend of the show. And Dave is I feel very warmly about Dave over the years. So absolutely.
Michelle Bauer (Alswager) 38:01
Well, and you know, do you know who we scored may 1 to work with our company know, Manny Hernandez.
Scott Benner 38:07
Oh, Manny. I love Manny. No, when we
Michelle Bauer (Alswager) 38:11
Yeah, so we have Manny, he he is the person that's in charge of all of our partnerships and then doing like finding more panelists, right, and getting good relationships with like Ada, Ada and things like that. So that we find the right populations
Scott Benner 38:24
to ask Manny basically put together what I think of as the probably the first big online community for diabetes that doesn't exist does it not exist anymore.
Michelle Bauer (Alswager) 38:35
So diabetes Hands Foundation, and I believe your plastic can also have to diabetes. They did it what happened was when Tom shirt was up on tech one he worked with Manny to bring it on board to be on type will be on type one is now called Beyond type two.
Scott Benner 38:51
They blended it with that I see. Yes.
Michelle Bauer (Alswager) 38:53
And all the Spanish. All of Bian type one and type two is also in a lot of languages, but a big Spanish population as well.
Scott Benner 39:01
Yeah, no, I get contacted constantly about translating some of the series in the podcast, I just can't figure out how they will accomplish it. So well I can I just don't have the money for it. But I need to voice I basically need to voice actors to sit listen to stuff. And then you know, speak it as it's happening. And I just don't know how to get it together. I guess is my is my problem. But to say that I hear about it a number of times a month from somebody is not an over exaggeration. Like Please can you please translate this into Spanish so I feel the same
Michelle Bauer (Alswager) 39:35
way about we didn't do an e book at first we finally put the eBook out and I'm getting so many things for that. But same thing got like doing the we got to find a voice actor to to do like, what do you call it books on audio? We haven't done audio yet.
Scott Benner 39:48
Yeah, that's um, it's just it's just I looked a little bit closer. I keep saying like somebody should sponsor it. You know, like, wouldn't you want to be the one to sponsor the Spanish content, like say it and I say it and I keep waiting for somebody to spring forward. But hopefully one day someone will. So I keep talking about it. So hoping, hoping someone will hear me. That's interesting. Okay, so Oh, and Manny did me a long time ago when I was trying to figure out what direction to move the bloggin. Many. He really gave me a lot of good advice. He's such a sweet guy.
Michelle Bauer (Alswager) 40:23
We really, I'm sure he'll listen to the podcast. Oh, well,
Scott Benner 40:27
hi, Manny. How are you? Should come on. Yeah, I mean, that's a that's an interesting story about what he started and what it grew into, and how he I mean, he left it, it got melded back together, like that whole thing is, people don't people don't know the effort that goes into you having a board, you know, web space where you can go and talk to other people at diabetes, it's a lot more effort than you might think. Michelle, is there anything we're not talking about that we should be talking about?
Michelle Bauer (Alswager) 40:54
No, I don't think so. I mean, the main thing was the grief book, Jesse was here. And if there's anyone listening that knows somebody who's lost anyone to type one, because we do actually have it for spouses and siblings at such, at beyond type one that Jesse was here, and then look for the new sibling book that will should be out within the year,
Scott Benner 41:16
you're gonna have your next book will be out in about a year you think? So? Yeah, writing a book is, it's so much work. I, I just, people say to me, are you gonna write another book? I was like, Ah, it's a lot easier to make a podcast, though. Maybe when the podcast is over? All right, one more, but it's just a lot of effort. And
Michelle Bauer (Alswager) 41:35
I think for me, it comes down to like, I look at my two birth kids, Samantha and Joey. And, you know, I dedicated my first book to them, like for giving me a reason to tie my shoes in the morning. You know, that was my dedication. And then there's so much I don't know, that's gone through their heads, right? Like, did I do things right that I did I neglect them, because all I talked about is Jessie. And so I'm really wanting to dig into those siblings brains, doing it for them, you know, to get this second book. So it's really their story is coming together. In this next one, about, you know, I named it tentatively, but I'm still here. You know, like dealing with the kids that are left behind and doing right by them.
Scott Benner 42:12
So that's interesting, right? Because those siblings have, there's a duality going on, right? They lost a sibling. But then they lose a parent, but the parent is looking them in the face still. And that must feel like you're almost purposely ignoring them, even though obviously, you're going through a situation that you just can't break free of at the moment. So is that? Does that feel like abandonment?
Michelle Bauer (Alswager) 42:39
Yeah, you bet. Like for sure. I mean, I both of my kids would tell you that. They've had lots of apologies for me. And like, Man, if I wasn't with it for those first five years, like, I did my best I got you to school. I said, you know, but I probably dropped some things that wouldn't have dropped, like, was it that important for him to, you know, for joy to play baseball, Little League. And, you know, I just didn't push in those directions. But we're all really close. They're, they're so close. You know, we worried when Jessie passed that, you know, there's eight years between Samantha and Joey. And like, how are they going to bond? Right, like, there's the middle kids not there and flash forward. My son, you know, pays rent and lives with my daughter. So,
Scott Benner 43:20
so Joey would have been thriving through nine he was three years younger than, than Jessie. Right?
Michelle Bauer (Alswager) 43:27
Yeah. Yeah. So he was nine when and he's turning 22.
Scott Benner 43:30
So you're saying it using him as an example 1011 12 1314 You're pretty checked out for him?
Michelle Bauer (Alswager) 43:38
Pretty checked out. That's how I remember it. I don't really know how he remembers it. Because that goes into the other topic, which is, everybody grieves differently, which is a very true statement, which means I'm grieving the way I agree, which is, I'm very vocal, the more I talk about it, he's still here. He's still, you know, his life purpose, right? Where Joey never talks about how he felt through it all. You know, he talks to me about other things, and he's doing he's really healthy. But, but we don't talk about those that day, or those years where my daughter will talk about it. But my daughter, you know, when I was publishing a book, she's like, well, I'm never gonna read it. You know, she's like, I lived it. I don't need to read all that terrible time. And then all her friends bought copies, and she's like, Oh, I'm gonna have to read it now.
Scott Benner 44:24
Can I ask you a difficult question? Sure. Did you ever consider ending your own life after he died? No, that never popped in your head?
Michelle Bauer (Alswager) 44:35
No, and I'll say it differently. What pops in your head? Is this utter black hole of pain? I don't know how else to say it. That it's you don't want to die. You don't want to wait to have to see them. I don't know if that makes sense to you is it's like I said it early on. When it first happened. I no longer feared death. Like I could die. tomorrow and I wouldn't care. Like I didn't have the will like a will to live like really, really interested in. If someone would have told me in 12 years, Michelle, you're going to be happily married, you're going to have a beautiful cabin and all this fun and, you know, great kids in your life, right. But flash forward, you know, it's very different. Like, like, I'm glad I'm here. I guess it's how I would say it. I could tell any parent is you'll be glad you stayed.
Scott Benner 45:27
Right? Okay. I understand. Yeah, just because you hear people say that's a knee jerk thing. People say when they hear about somebody losing a child, they're like, Oh, I couldn't go on. Like that kind of thing.
Michelle Bauer (Alswager) 45:38
Every parent would say, I have no other choice. Right? Gotcha.
Scott Benner 45:43
But it doesn't mean that the pain you're talking about? Is it? Um, is it omnipresent? Is it like a headache? Or does it come and go? Are there? Do you wake up in the morning? And not remember, he's gone for a few moments like this, that kind of stuff happen?
Michelle Bauer (Alswager) 46:01
The true statement? Is it never, it never hurts less? It hurts less often. So, you know, like, I was telling my husband the other day, I had, I bet you had 10 dreams about Jessie and one night, but then I'll go six months without one. But the reality is set in so much to me, where I used to have the dream. And I'd wake up and go, Oh, man, right. He's, he's gone. But now my brain is so trained, like, even during the dream, where I'm seeing him and talking to him. And in my dreams, it's always me trying to find the insulin and trying to find test strips, because it's been 12 years, and I gotta get him to an endo. But they're going to be like, what were the healthy men for 12. And then in my dream, I stopped myself and go, This isn't real. He's dead. Wow. And truly comes to me and my dreams as that, so I don't know how to explain it better or worse. It just is,
Scott Benner 46:50
right? No, no, I am. That's the closest you came to make me cry that time. So just don't be sorry. I because I'm going to tell you right now, like, I'm a person who connects like that. I think things through ahead of time. And you know, when I was a little kid, I remember, like thinking through, like, what would I do if my parents died. And I don't, and I don't do it constantly. You know, I did it that one time. But the way it's kind of morphed as I've gotten older, is sometimes I look back and I remember things that way. And like, oh, I don't know, I think of the day that Cole got accepted on his first like all star team when he was like four years old, five years old, something like that. Actually, it was six, excuse me. And I remember taking him to a baseball field, where he was going to look for a list that was supposed to be hung up on a bulletin board. And he was super excited. And I it was a long walk from the car. And then we got the list. And he in his excitement, didn't see his name on the list. And he turned around, and you could see him like he was he was rejected, but he was trying to he was trying to be happy. Like he was trying to act like it was not a big deal. But I had already seen his name on the list. And he turned around, he's like, I didn't make it. But he was trying to smile through it and and I turned him back around and had him look again. And I remember the excitement on his face. And I'm telling you right now, it doesn't matter where I am, I can put myself in that car, take that walk down that path and experience that entire thing every time. And it used to be a happy feeling. And as he gets older, it's starting to become a sad feeling for me. And I just, I just think that's because he's, he's not a little boy anymore. You know? And, and I just, I know, I imagine, Michelle, that if I was in your position, I'd have a hard time not doing that. Because I think I would be one of those people who would run myself through scenarios, and I'm not certain if that would be good or bad. So
Michelle Bauer (Alswager) 48:55
I you know, whatever you think is the worst possible, like, whatever you can drum up in your mind of what it would feel like to lose your child. I can tell you, it doesn't come close, nor what I want you to ever feel what it feels like. The word I hear the most and I've used is it's it's it's a it's terror. The moments are it's just terror, and you don't wish that on anybody. Right and and so I make a point of I don't put sad scenarios for my other kids. I can't think that way they know that I always tell them like you have to call me more often than the normal mother because I need to know that you're breezing over there. If I don't hear from you for four days I'm going to worry so you know they know that
Scott Benner 49:41
they let you do they let you track them on Find My iPhone so you can see where they are.
Michelle Bauer (Alswager) 49:46
I don't but I will say I probably Snapchat with my daughter every single day. And and knowing that my son lives with her I'm okay.
Scott Benner 49:56
So this is this will sound I don't know how this will sound I don't actually don't care how it sounds, but you know, on the Find My iPhone app on iPhone, like my whole family is on there, even like my brother. And there's kind of a widget on my screen where it pops up and like everybody's little icons pop up and underneath of it, it tells you kind of where they are. And there's something incredibly comforting to me to watch people move around. And like, I don't, I guess it's because i that means they're alive. Right? Like, yeah, yeah. And, and, anyway, it's my brother. Let me my brother's 35 Michelle, you know, they mean, and like, Yeah, I'm like, I see him at work. I see him at home, I see him by the lake. And it just makes me happy to think that he's out there doing that.
Michelle Bauer (Alswager) 50:43
Yeah, I mean, my kids when they were younger, to like, you know, if they didn't answer a text right away, or answer a phone call, I used to, like lose my brain and try to explain to them why I'm irrational. But my daughter, actually a quick story is she when she was younger, but she was driving, she took Joey to target, just to go shopping something to do. And I'm like, Okay, fine. And I'm driving, and I'm probably a mile from Target. My daughter calls me and she's in sheer panic. She can't find Joey. They set his name over the loudspeaker. He's not coming to where he needs to be in. I'm in like, I'm losing my mind. So I'm like, Okay, I'm on my way. I'm coming. You know, I'm coming, I'm coming. And every bad thing is going through my head. And I could tell it was it was happening for her to where she used to think I was being irrational. But then it was real for her, too. And so to make it worse, I'm like, Okay, I'm a mile away. And she said, Mom, not at that target. I'm at the one on the other side of town. And then I became crazy mom, that was like, you put them on the phone right now. And I'm screaming at customer service and saying, You need to put an alert act as if he's been taken. I'm like, calling his name over the loudspeakers and doing it and do it now. And then I remember saying something like, I've already lost one sound, I can't lose another one. And I remember saying it to this customer service lady, of course, my son was playing video games, you know, listening to his name,
Scott Benner 52:05
ladies, is at the front of the target running the running this the loudspeaker and she's like, I don't make enough for this. This is,
Michelle Bauer (Alswager) 52:12
oh, my mom's screaming like, I can't lose another job.
Scott Benner 52:15
But it's, it is interesting, though, like, because I'm drawing a parallel in my head about diabetes. Because when you try to tell your kids like, look, it's important. You know, I need you to test or I need to know or you need to know, or somebody needs to be looking. And they're like, whatever, it's fine. You're like, No, you don't see the bigger picture, you don't understand what could happen. You have to me, Michelle, you have what I would consider to be the ultimate perspective. Yeah, that's all your perspective is just an you know, I kind of talked about it sometimes the way you talk about understanding grief, which is, you have a level of perspective, I don't wish on somebody. But but but we should take your we should take your opinion, seriously. Because you see, you see an aspect of life that that others don't get to say so.
Michelle Bauer (Alswager) 53:03
Yeah, but I stick with my you know, anyone that I meet who has type one, or their kid was just diagnosed, I'm like, you gotta let your kids live their best life. Like there's nothing I can tell you. That happened to Jesse that I would do differently as far as living life. And, you know, getting out there and doing what you can.
Scott Benner 53:20
Yeah, I'm always, you know, as time passes me, I lose what episode it was. And I can try to look real quickly. But I had a mom on once who lost her son in college. And she just said something during the conversation about she would have rather him have 21, great years than 40, soso years or something to that effect. And I've always, always tried to hold on to what she said, because I thought it was brave of her to say after he was gone. Because when Bell was at will hovers. Yes, we'll have a response. That's exactly who it was. And I just find that to be that that is a helpful statement for me as I've raised my kids, that, you know, we don't want something bad to happen. But we also don't want to get to the end and realize we've lived half a life, trying to make sure we get longevity. There seems to be a balance in there to me.
Michelle Bauer (Alswager) 54:14
Yeah, I actually got to meet Lindahl face to face. We're both doing a JDRF bike ride and Amelia Island a few years back. Which was which was great to experience with her.
Scott Benner 54:26
Yeah, she was she really she made a big impression on me early on when I was making the podcast. So I've always really, I've never I don't know if I've ever told her but I've always appreciated she was on the 19th episode of the show.
Michelle Bauer (Alswager) 54:38
I mean, keep dropping all these names. I'm going to end up tagging all these people.
Scott Benner 54:43
Do you think I'm just bringing up people to try to like get you to share the podcast with more people?
Michelle Bauer (Alswager) 54:50
No, I was still in contact with Lindahl so I hear from her quite a bit she still posts a lot about well,
Scott Benner 54:55
okay, thank ya know she she made a big impact on me. So, alright, well miss So I really appreciate you doing this. You would prefer if people bought the book on Amazon. Is that the best way?
Michelle Bauer (Alswager) 55:04
Yeah, I mean, that's the best way to go, I think as Amazon will get you faster. And of course, if someone wants to reach out to me directly, they can find it's on Facebook as Jesse was here, author. And I can do sign copies as well. Very nice. Thank
Scott Benner 55:18
you so much for doing this. I really appreciate it. Thanks, Scott.
Michelle Bauer (Alswager) 55:20
Thanks for having me on, of course.
Scott Benner 55:28
I want to thank one of today's sponsors in pen from Medtronic diabetes, and remind you to go to in pen today.com To get started with that insulin pen that talks to your app, and gives you all that information that many people have come to expect from an insulin pump. Thanks also to Dexcom don't forget that you may be eligible for a free 10 day trial of the Dexcom G six, where do you find that out? dexcom.com forward slash juice box. There's also links at juicebox podcast.com. And in the show notes of the podcast player you're listening to right now. But you can remember it dexcom.com forward slash juice box and of course in pen today.com. And if you're interested in hearing Michelle's first interview with me from 2016 It's called Jessie was here and it's episode 90. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
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