#1325 Fight the Power

Bethany talks about balancing life with diabetes.

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

Scott Benner 0:00
Hello friends, and welcome back to the juicebox podcast.

On today's episode, I'll be speaking with Bethany. She's the mother of a child with type one diabetes who was inspired by another episode called Adam's Song to push to get what she needed for her daughter. Nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, AG, one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's juicebox at checkout to save 40% at cozy earth.com if you are the caregiver of someone with type one diabetes or have type one yourself, please go to T 1d exchange.org/juice, box and complete the survey. This should take you about 10 minutes, and will really help type one diabetes research. You can help right from your house at T 1d exchange.org/juice, box. If you're looking for community around type one diabetes, check out the juicebox podcast. Private Facebook group juicebox podcast, type one diabetes. Today's podcast is sponsored by touched by type one. Check them out on Facebook, Instagram and at touched by type one.org. If you're looking for an organization who's helping people with type one diabetes. You're looking for touch by type one. This episode of The juicebox podcast is sponsored by the continuous glucose monitor that my daughter wears, the Dexcom g7 dexcom.com/juicebox Get started today using this link, and you'll not only be doing something great for yourself. You'll be supporting the juicebox podcast. Today's episode is sponsored by Medtronic diabetes, a company that's dressing hyperglycemia head on a topic that often gets overshadowed by the focus on hypoglycemia. Learn more at Medtronic diabetes.com/hyper

Bethany 2:19
Hi. I'm Bethany, and I'm the mother of a two year old little girl with type one diabetes.

Scott Benner 2:26
Oh, two years old. How old was she when she was diagnosed? Yeah,

Bethany 2:29
she was 19 months old. Oh, gosh, okay,

Scott Benner 2:33
this is not Yeah. So

Bethany 2:35
my, my baby, I'm

Scott Benner 2:36
very and this all very new. How old is she now? In months,

Bethany 2:39
she is. She will be three in June. Oh, okay, so she was diagnosed January last year. So we're, we're a little over a year now into diagnosis, getting towards

Scott Benner 2:50
that year and a half spot. Is it any different today than it was, let's say the third month?

Bethany 2:56
Yeah, it is. It's definitely better. I would say we're still not in a great spot or the spot that we want to be, but we're we've definitely made progress from where we were this time last year. How

Scott Benner 3:10
do you score the spot you're in? How do you How would you describe where you are?

Bethany 3:14
I would say, if I were to use a scale of like zero to 10, we're probably around like a six. I would say most days,

Scott Benner 3:22
is a six a success? Is it a Is it not a success? How do you feel about that grade? I

Bethany 3:30
would say it took us a while, I guess, for context, it took us a while to get a treatment team that we really felt like aligned with the goals that we had for my daughter, and now we do have that team. And so we spent a good part of the last year kind of fighting some barriers in the healthcare system and just not feeling like we had a healthcare team that was really listening to us and the glycemic control we wanted for our daughter. So yeah, we made some changes here within the last four months, and I feel like we're on a good path, but almost just starting off that path. So we've got some we've got some room to go.

Scott Benner 4:10
What do you do for a living? Or what's your background, your education background?

Bethany 4:14
Yeah, I am. I'm a psychologist, so I actually work, and I work in the healthcare system where we were receiving care. Listen,

Scott Benner 4:23
I should have prefaced this with more backstory so that I could have taken credit. Now I'm stuck just with you having to believe I knew you had a job something like that, or your background was like that because of the way you described your transition from the team you had to the one you have now it was so iterate of how they would feel if they heard it that,

Bethany 4:44
you know that that does not surprise me. I've been given similar feedback. I have a very gentle kind way of talking about other people. Yeah,

Scott Benner 4:56
I just, I've spoken to other people who would have said like I was. Saddled with some people who didn't know what they were talking about. We got rid of them, and now we're doing better. And you were just so polite. Like, say she's like, maybe she owes the money and she doesn't want the man, like, what's going on? But then I thought, no, she's probably in mental health care somehow. Or I thought you had a very corporate job where you're just very accustomed to being overly nice to everybody. I couldn't figure out which it was

Bethany 5:24
probably a combination of both. So I'm a I'm a psychologist, I'm also a supervisor for our team. And then when Cora was diagnosed, I decided to go back to school to get my Master's in healthcare administration. So I'm also also doing that too.

Scott Benner 5:42
I think I should get a degree in generalization, because I'm amazing at it, so I don't understand why people don't like it when you generalize generally, you're right. So anyway, that's it. Was very kind of you, but what were the problems you were having that made you get away from the people you were with initially? And now we're going to hear from Medtronic champion Terry. How long have you had diabetes? June 2025,

Speaker 1 6:08
it'll be 50 years. I'm very much involved in the diabetic community in a lot of areas, and I helped start the walk here in Lincoln, Nebraska

Scott Benner 6:17
when you were first diagnosed, what was management like?

Speaker 1 6:19
I started out on beef, pork insulin. And I tell people jokingly that I used to smell like a bacon cheeseburger. Tell me about the impact of Medtronic technology. Finger stick is only a point in time, and that first 20 years for me was extremely difficult because I had high blood sugars all over the place. The CGM, to me, was the lifesaver.

Scott Benner 6:45
Prolonged hyperglycemia can lead to serious health problems and long term complications. Early, inconsistent management of hyperglycemia is critical. Learn more at Medtronic diabetes.com/hyper

Bethany 6:59
I think so. We had a really positive experience when she was initially diagnosed. The inpatient team was great. You know, when they were giving that, I know you've called it in the past on the podcast do not die advice. Like I felt like the do not die advice that we gave was really supportive, very empathic. They really listened to our concerns. I was really worried about, you know, I almost have enough knowledge of medical conditions that can be dangerous and just fuels my anxiety. I'm not medically trained, but I work in in a healthcare system, and so I knew what a Dexcom was. I knew what continuous glucose monitors were, and so when she was admitted, I wanted to get a Dexcom on her as soon as possible. And so I told their team, like, I don't think I'm going to be able to sleep until she's got a Dexcom. They were like, how do you know what that even is? But they listened to me, and they heard my concerns, and they got the prior auth started, and we got a Dexcom the day she left the hospital. Okay, so

Scott Benner 8:01
positive upfront, something happens then you I mean, is it? I mean, can I guess first of all before I guess, let me say, I love that you took my my colloquial phrase, don't die advice. And we're like, let's not conjugate, Scott, do not die advice. I do. I like you. You're very you're very proper. Thank you. But so I'm gonna guess that you wanted more stability, or you wanted lower numbers or fewer spikes, and they were telling you, oh, she's only two. You're doing great. Yep,

Bethany 8:33
that's exactly what it was, right? We were initially seeing numbers in spikes up to 400 up to, you know, readings for the Dexcom. We weren't even getting readings from the Dexcom, and, you know, settling above 200 and they were saying, you're fine. You know, you're doing so great. And my husband and I weren't satisfied with that. We wanted better glycemic control again, like I knew at first, I was like, you know, we're so far from where I want to be long term for her, but I feel like a good first goal would be, hey, the research says under a seven, A, 1c, prevents long term complications. My baby's going to have diabetes for most of her life. She's only going to have, you know, a very, a year and a half of her life where she doesn't have this problem? Yeah, I want to give her the best opportunities possible. I have, you know, financial resources, I have the mental resources to do the very best for her, and so that's what I want.

Scott Benner 9:33
And when you said that, did they just say, No, you're not that. That's okay stay here, or did you just feel like they weren't going to be supportive? So you moved on, on your own.

Bethany 9:41
Well, it got, it did get to a place where they eventually just said no, but at first it was very much like, if you want to do that, that's fine. We don't know very much about that. So, for example, we got, I wanted to get her on a pump right away, because she was very she was very tiny, um, she was only. She was less than 18 pounds when she was diagnosed, because she lost weight leading up to diagnosis. So I've got this itty bitty, tiny, 19 month old who I could barely give a half a unit of insulin to. She she left on a half a unit of long acting and even that, she was dropping through the night. So she's really insulin sensitive. So we start doing research, and we say, hey, like, if we can get a pump, we can give her much smaller doses of insulin. I want that. And they never, they didn't say no, but they didn't really support us in the Yes, it was, if you want to, that's fine, like, we'll put the script in, but there was no support helping us optimize I see the pump or use it in any way. We were kind of just on our own. They

Scott Benner 10:43
were sort of almost shadow banning you, like they were. They were like, Oh, that'll be fine. But then behind the scenes weren't doing much to help it move forward, absolutely.

Bethany 10:51
Yeah. So we started off with two months post diagnosis. We got her on OmniPod five, and they were like, we don't know a whole lot about this algorithm. If you want to try it, you can. And, you know, I not

Scott Benner 11:06
getting any help, and having to feel like, Oh, I think they're helping me, but they're but they're not. Yeah, yeah.

Bethany 11:12
It was, yeah. It was a lot. It was very confusing.

Scott Benner 11:17
Today's episode of the podcast is sponsored by Dexcom, and I'd like to take this opportunity to tell you a little bit about the continuous glucose monitor that my daughter wears, the Dexcom g7 the Dexcom g7 is small, it is accurate and it is easy to use and wear. Arden has been wearing a Dexcom g7 since almost day one of when they came out, and she's having a fantastic experience with it. We love the g6 but man, is the g7 small, the profile so much closer to your body, the weight, you can't really feel it. And that's coming from me, and I've worn one I've worn a g6 I've worn a g7 I found both of the experiences to be lovely, but my gosh, is that g7 tiny, and the accuracy has been fantastic. Arden's a 1c. Are right where we expect them to be, and we actually use the Dexcom clarity app to keep track of those things. That app is built right in to Arden's Dexcom g7 app on her iPhone. Oh, did you not know about that? You can use an iPhone or an Android device to see your Dexcom data. If you have a compatible phone, your Dexcom goes right to the Dexcom app. You don't have to carry the receiver. But if you don't want to use the phone, that's fine. Use the Dexcom receiver. It's up to you. Choice is yours with Dexcom, dexcom.com/juicebox,

Bethany 12:41
I think the way that I learn best is I ask a lot of questions and I do a lot of research, and that helps me decide on a direction moving forward. And so I almost think, you know, initially, they kind of put up with that, and then over time, I think they just got really annoyed by me in my questions and in it, you know, I think looking at I was always polite, I was always kind, I was respectful of their time, but I would ask. I would kind of push them outside of their comfort zone on questions that I feel like they should be able to but, you know, looking back, I just think they didn't have the resources to provide what we needed to support our daughter. So

Scott Benner 13:24
polite. What do you mean resources? Do you mean the clinic? Do you mean intellectual faculties, or actual people? Or what are you saying?

Bethany 13:33
I think like, like, manpower, resources, they only had one diabetes educator for the whole clinic, okay? And

Scott Benner 13:40
you think if there were more of them, they could have given to are you saying to me that you think they had more to give, but no time to give it? Go ahead. Let go. Bethany, let go. Just let go. I

Bethany 13:51
think they, I think they weren't

Scott Benner 13:56
so close. You're so close, Bethany, you're so close.

Bethany 14:01
I don't think they were upfront with the limits of what they could provide. Eventually, after I pushed enough, they were more transparent with me to say, look, we only have one or two kids chorus age per year that come through. And then by the time you know, they really get more control, they're older, and it's easier to control them. And so you're asking questions that we just don't have any experience with and so I it eventually got to that place where I feel like the diabetes educator is more upfront and transparent with me, but leading up until that, we just were kind of ignored, or like phone calls weren't returned, or we got that's a really great question. You make me feel like your questions make me feel like I haven't been doing this job for many years. Yeah, also,

Scott Benner 14:44
is that how it makes you feel? Because the way it should make you feel is that you've been doing it for a long time and you haven't bothered to figure it out yet. Yeah, no, everything becomes so paint by numbers for them that they don't they can, by the way, there plenty of people who are good at it not saying otherwise. I. But when you get stuck with someone who doesn't know how to help you, they you know, and you have to understand in their mind, they think they're doing a good job, like they do. Yeah, yeah. The ADA says seven. You're seven. It's good. I want to go back to something you alluded to didn't like right out say, but my daughter was diagnosed when she was two, and it was like, right after her second birthday just a handful of weeks, maybe. So I recall very strongly someone telling me when I asked about this, Hey, well, what about these higher blood sugars and these spikes and like, is this not going to be detrimental to her health? And someone looked me in the face and said, complications from type one diabetes don't come for like, 30 years. And they said that to be comforting, but I responded and said, but she's only two, right? Are you telling me, my daughter is going to have diabetes complications when she's 30? Yeah, because that doesn't stay with that. Yeah. That doesn't sound very comforting to me. Does it sound comforting to you? Then there's a pause and a stare. No one ever goes, Oh yeah, that was a dumb thing to say. I shouldn't have said that, you know, right,

Bethany 16:10
exactly the treatment that we got to, right? If we we'd say these things, and they're, you know, I think they would try to be comforting of but also, in my mind, I'm thinking through all of her, right, not just two year old her, but also the 12 year old who wants to try to do it on her own. And, you know, I want to be able to give her the best glycemic control I can now, so that she can have the opportunity to mess up and figure this out on her own. No, I don't want her sitting at, you know, horrible, a 1c you know, until she gets a little older and it's easier, and then go into puberty, and there's always going to be something hard. And I want her to be able to have bandwidth. You're trying

Scott Benner 16:58
to buy her a little time to figure it out by yourself. Yeah, Bethany, what makes you sleep? Why are you smart person? What happened? How did you think that far ahead?

Bethany 17:07
I don't know. I think probably has to do with my job too. You know, as a psychologist and providing therapy like I don't work with kids. I work with adults. And so often, though, when I'm working with adults I, as I'm thinking through right like my clinical impressions and my treatment plan, and how can I help this person? A big factor of that is, is their history and what, what they have coming into this now? And so I think I think about that for my own kids too, in in most areas of their life, including, you know, in diabetes for my for my youngest daughter, it felt

Scott Benner 17:41
like you were trying to put time in the bank for her, like, buy her credits, almost, so that, like, so, so you Okay, so you matched up your psychology background and said, there's obviously a good chance that when she hit 1718, 1920, she might rebel against this, and if we do really well up until then, and she has a couple of bad years, maybe that helps us not have health issues down the road even further. Yeah,

Bethany 18:09
because I know some of that rebellion again, putting my training hat on like I know that some of that is very developmentally appropriate, and so I wanted, I don't want diabetes to take that away from her like I want her to be able to do all of the things that are developmentally appropriate throughout all of the stages of her life.

Scott Benner 18:30
Bethany, take a left turn with me for a second. Tell the people listening why it's important for your kids to push back at certain ages so

Bethany 18:36
that they can they can build independence.

Scott Benner 18:40
So if you keep them under your thumb and you try to control them the whole time, all you end up with is larger infantilized adults. Yep, yep, okay, yeah, bite your tongue sometimes and they say something, and they're just clearly just testing boundaries and trying to see if they're gonna like, like, what happens if they don't listen? If they take another half step? That stuff's all very healthy, Yep, yeah. Okay.

Bethany 19:02
You know, I think when I work with adults who are going through this for their own kids, you know, one piece of education I'll often give is, you know, your teenagers telling you that they don't need you, but they do. They just need to say that they don't need you. What they need you to do is they need you to say when they say they need time by themselves, and they need to know that you're still in the hallway or in the room or downstairs. If they decide to go there, they might not do that, right? They might not come to you, but they need to know that you're still there. They need to know you have a soft they have a soft place to land with you.

Scott Benner 19:37
You know, I had as a stay at home dad for a very long time. I guess there's an argument to be made. I'm a podcaster now, but as I'm 52 it sounds embarrassing when I say that out loud, but, but I always thought that one of the most important things I was providing was a very small, almost imperceivable idea that when people came in the door, there. Somebody at home base, like I was there and that they Yeah, that they knew when they got back, there'd be somebody there, yeah, yeah, and that. And it wasn't like, right away, like, what'd you do? How do things go? You know, you weren't it was just like, Hey, what's up your presence? Yeah, yeah. Chat. Like, it's hard to say I miss it, because we still do it be. I miss how young they were. Yeah, I miss those, like, after school conversations, when they, like, blurred out everything that happened to them, you know. And I very much enjoyed that we still do it. It just looks different now. Now it's like Arden on FaceTime from college at the end of a day, or, you know, my son, you know, just talking about, like his job search, and you know what he's learning with friends as he gets older, and interesting to see him start to pay attention to how other people are treating third parties and how I don't how, you know, I don't want to be involved with a person who treats other people like that. Yeah, really, really like fun stuff. I still feel like I'm growing from them. Yeah,

Bethany 21:02
you know, I think one reason right, like, I know that for my training, that this is what's healthy and developmentally appropriate, but also I really benefited from that structure in my own family. Growing up like my parents have always been really intentional the way that you have to be that soft place to land. I remember my mom very explicitly telling me, you know, going when I went to college and graduate school, you know, telling me, honey, you know, like you know, that no matter what happens, you always have a soft place to land, here at home. And they really were present in that way. And so I think as I think through what I want for all of my kids, including, you know, my daughter with diabetes, like I want to be that for them, like I want that was such a gift that my parents and still is a gift that my parents give me. And so that's just really important to my husband and I to be able to do that for our kids too. And

Scott Benner 21:59
am I right to say that in your experience with your own parents, soft place the land doesn't mean no pressure, no stress. You don't have to try. It has it means go out there and try. And if, if you fall in your face like you can drag your ass back here and pull it back together again. Yep,

Bethany 22:17
yeah, totally. And they'll be honest with me too, when I'm, you know, when I'm off mark like that. We had a situation recently where I just, oh, you're just having, like, a horrible Diabetes Day, and my husband and I were arguing, and I just went to my mom to kind of like, vent about it, and she was like, you know, I hear you. I also think you probably need to go take a nap, and then you might feel better about this afterwards. She's like everyone. And my mom always growing up, she even had, like, a picture of it at her at her work. It's a picture of a little snowman that's melting, and it says everyone's entitled to an occasional meltdown. And she's just notorious for saying that. So in that moment, she told me she's like, you know, everyone's entitled to an occasional meltdown. I also think you need a nap right now. Mommy

Scott Benner 23:02
has hers in her walk in closet, in case you're wondering,

Bethany 23:07
I did. I took a nap and then I did feel better afterwards. But yeah,

Scott Benner 23:11
I think I've said to my wife more than a handful of times, why are you yelling at me?

Bethany 23:19
We're all entitled to an occasional moment.

Scott Benner 23:21
You should see, like, I've had some like, monumental, like, fall apart in my life, and I can even feel myself leaning into them as they're happening. Yes, it's almost like, it almost, you know, when you watch a bad TV show and you're like, are they trying to be bad actors? What's happening right here? Like, I've leaned into things too hard a time or two.

Bethany 23:41
Oh, and I think after post diagnosis, like something like diabetes in your two year old just kind of makes brings that out too, like I remember, and I think that's one thing that's been really helpful for me, listening to juicebox, knowing that Arden was diagnosed so young, and like we listened my husband, I listened to the Pro Tip series. There'll be all of those, and that's really helpful for our management. But I love hearing the stories, because there will be, like, those little moments where you'll talk about those early years with Arden, and it's so incredibly validating. Like, there was one episode where you said, like, Yeah, I mean, for a long time, I just went into the shower and cried, and I was like, Oh my gosh, someone else did that.

Scott Benner 24:20
The best place to cry your face is already wet, so it's really half handled already, you know, because it's

Bethany 24:27
just, it's always horrible when your kids diagnosed. But I think there's something particularly horrible about your baby being diagnosed with diabetes. Yeah, yeah.

Scott Benner 24:36
Also, you know, well, I don't know. I was talking to a person the other day who wanted to bring up all the kind of good things that she got out of her diagnosis, and she's like an older type one, which I love the conversation. And I want to say that I, you know, obviously you wouldn't trade, I mean, I'd give diabetes away for anything. You know, when my mom passed away, I remember being in the hospital room with her. Know the last last hours that I was going to be with her. I knew for sure, and I knew we were saying goodbye to her right there. And I turned around after I talked to her, so that she couldn't see me, and so that my other brother could kind of get and kind of come up to her and talk to her personally too. And I I'm still surprised I didn't break all my teeth trying not to throw whatever was in front of me out the window, yeah, you know. And, and I wonder how much more poorly I would have handled it if I hadn't been through all these other experiences in my life, yeah, you know. And a lot of these experiences taught me, personally, tiny modicums of self control, like, like, through the like, like, because I can remember standing in the shower and I feel like I could have punched a hole in the wall, you know, and I didn't. And I felt like I could have screamed and I didn't, because I didn't want my kids to be upset. I didn't want my wife to know that I was struggling. I didn't mind her knowing I was struggling. I didn't want her thinking that I was collapsing because I wasn't. I just needed a release after that whole day of keeping a two year old alive with diabetes, yep, and just knowing that it wasn't over. Now it's the evening and the laying down, and are we going to sleep through the night? We're probably not, and then I'm going to get up in the morning. In the morning and start over again and and do it again and again. And Saturday doesn't matter. Saturday's not Saturday anymore. Do you know what I mean? Like, Sunday's not Sunday? Saturday's not Saturday. Every day is just like, ready, set. Don't die. Don't die. Survive. Keep your kid alive. Yeah, yeah. Go, go, go over and over again. Anyway, I know that helped me. I've been mindfully trying to become more patient throughout my adult life. And I'm, I'm there now, like I'm, I'm I'm there, I still have moments and everybody is like your mom said, you know is going to but I'm there now, like I have an appreciation for slow and steady and consistent, and I apply that to my expectations too,

Bethany 27:05
you know? Yeah, I think this experience, it builds resilience, right? And I see that within my husband and I even just over this last, like, little under a year and a half. I also see it in my daughter too, and on the one hand, right? Like, it breaks my mom heart a bit, because she's resilient beyond what almost three year old should have to be. But I'm also really proud of her too, and and just how she's she's been a trooper. People ask us how we're doing, and we're like, well, she's doing great. She's doing the best out of everyone, because she's just living her life and happy as can be and doing great. I'm really proud of her. I also just like it makes me sad that she that this is the weight that she has to carry.

Scott Benner 27:55
No, of course, how do you have other children?

Bethany 27:57
I do. We have an eight year old, eight year old boy, and then a five year old daughter in the middle, and then our type one is our youngest.

Scott Benner 28:06
Gotcha. How are you like? I'll talk to you first personally. How do you feel like you're handling this new experience for yourself, and where is it getting you and where you Where are you doing well?

Bethany 28:20
I just really struggle. I've always been a more anxious person, and I feel like leading into diagnosis that was in a relatively good place for for years, leading up to kind of where we were at when Cora was when my daughter was diagnosed, and then we just had a few really hard life experiences in diabetes was the cherry on top. And so I think the most sensitive one kind of before Cora was diagnosed as my eight year old, he had a tonsillectomy and adenoidectomy. A month before my daughter was diagnosed. He did great. The surgery itself was fine, but then that night, he hemorrhaged at home to the point where he was, I mean, profusely bleeding from surgery. And so, you know, ambulance was called. They rushed him into emergency surgery. He was fine, you know, they they had to cauterize the the back of his throat again. And he stayed the night at the hospital, and he was fine, but it was wait. He was hemorrhaging out of his mouth from his tonsils. How

Unknown Speaker 29:27
old was he

Bethany 29:29
seven? Oh, did

Scott Benner 29:31
you like?

Bethany 29:32
It was horrible. Cry,

Scott Benner 29:34
fall over. Did it all happen at once? Like, what did you do?

Bethany 29:37
I mean, initially, I just went into this is what we need to do mode, right? Like, I was like, okay, he's hemorrhaging. I'm calling 911, I'm getting a bucket, right? Like, we're getting his coat on, we're getting shoes on, we're gonna wait at the curb for the ambulance. We're going and so it was just go, go, go. This is what we have to do. And then there was a moment in the ER, because I just was in go mode. And. So was all, were all of the nurses and the medical team around us. So they rushed us back, you know, they got them suctioned at some point, I don't even know how, because it was such a blur, someone asked me, like, can you hold, can you hold a suction? And I was like, Sure. And so I'm here, like, suctioning blood out of my son's mouth while they're getting him ready for surgery. And I was probably there for about 15 or 20 minutes, like, whatever, all of this was going on around me. And then I think one of the members, one on one nurse, recognized that, like, oh, that's mom. That's mom. That's not Oh, my God, that's mom standing there. And she went up to me, and she's like, your mom, right? I was like, yeah. She's like, let me take that you don't need to be doing that. I'm sure you are having a hard enough time, like you don't need to be doing that. And like, in that moment was when I just, like, broke, yeah, I just fell apart, and I said, thank you. And I just was sobbing. And he was like, he never was unstable, but he was pretty out of it at this point. And so, like, he was, I wasn't worried he was gonna see me breaking down. And then shortly after that, they got him back. And, like, it was very uncomplicated, like they know what to do at that point. They just re cauterize it. He was on the on a, you know, they admitted him to the hospital. But it was, I think, from, like a just witnessing how much blood there was and how traumatic it was. I mean, it was dramatic. He had a ton of blood in his stomach from the hemorrhage, and so, because I don't know how long he had been hemorrhaging, he was, honestly, he was just, he was playing like a Pokemon card game with my husband on the couch, and then he just turned to me and he goes, I'm bleeding. And I was like, You're bleeding. And he was like, I'm bleeding. And he like, spit blood into his hand.

Scott Benner 31:47
What are the doctors who did the procedure say after that? Sorry. What are they? They don't what happens there? I

Bethany 31:54
think it's just so normal for them that, like, this is a known complication from a tonsillectomy, right? It doesn't happen super often, but it's like one of the most common, you know, one of the most common complications that happens. That's

Scott Benner 32:06
a good example, Bethany, by the way, of anything can happen and you shouldn't. You shouldn't think that it's not going to happen to you, because what a real random ass thing to happen. Oh my god. I was

Bethany 32:16
just like, shell shocked after that, like I was terrified he was fine. He made a totally fine recovery after that, but my nerves were just shaken from, like, I was really anxious about, like, the health of my kids, and then Cora was diagnosed, like, less than a month later, and I was like, What is going on? What? What is happening to my life right now? Yeah, well, it's

Scott Benner 32:40
interesting to hear you talk about, because it's all reasonably fresh for you. Yeah. So you you transition from the care team to the new care team. Were they able to support you better, right? Yeah. What was their support in? Was it actual functional? Here's Step one, two and three. Or were they just standing behind you when you were saying, Hey, I found this guy's podcast and would be doing this stuff now. Yeah,

Bethany 33:06
no, that's a good that's a good question. So I actually one of the reasons why I wanted to come on to be interviewed was because I really went into advocacy mode after listening to another podcast episode of a dad with a kiddo just like my daughter, you know, same age, same weight, hearing the care that they received and how starkly different it was from the care we were receiving, really made me be like, Well, I'm not putting up with this anymore. I'm I'm kind of done, you know, I've been kind. I've pushed, you know, I This isn't okay. And the real kind of piece that it was hinging on was using diluted insulin in the pump. That was something so we, we used OmniPod at first. We probably shouldn't, have to be honest, she only was on like three or four units total for the day. And you know, when I said, like, Hey, should we try automated mode? They're like, sure, if you want to, you know, without really telling us, like, hey, the minimum amount is five. It might not work for her. Let this help you get a manual profile and pump until she needs more insulin. So it was a mess, and this is with me, like I'm reading books, I'm listening to all your podcast episodes. I'm reaching out and asking questions. Like, I'm doing all of this on my own with my husband too. You know, he's doing all of this as well with us. And eventually, you know, I came to them, and they're like, it just sounds like, instead of trying to troubleshoot to help OmniPod work for us, they were like, it just sounds like it's not working. You want to try a different pump? Well, I think that was the right choice at the time, ultimately, like it was really kind of their only solution that they offered. They didn't really offer much other help to try to make OmniPod

Scott Benner 34:51
work. They ended up with a good solution, but not on purpose, maybe

Bethany 34:56
no. And their reasoning wasn't really pure either. They were like, we just know. T slim better. We'll be able to help you more with T slim. But then when we switched, we slipped, switched to T slim with basal IQ. Initially, like, went under the guise of like, we know it better. We can help you better. We'll help more with settings. We switched, and it was just the same story, like we were just doing it all on our own. You know? We'd ask questions like, hey, we think we need to do basal testing. Any idea on how we should do that with like, a two year old? And you know it, it's not like they wouldn't answer or say anything. It's just what they had to say. Wasn't really helpful. They

Scott Benner 35:34
just give you a sheet of paper that that describe basal testing. Yep, pretty much, yeah. I know what they do. Don't worry. Yeah, it wasn't really helpful. I have a handout. Would you like a handout? It's a mimeograph. Do you remember? How old are you? Bethany,

Bethany 35:50
I'm 33 No,

Scott Benner 35:52
you don't know mimeograph. Nevermind. No, okay, but

Bethany 35:56
yeah. Then when it wasn't working, I, you know, was talking to lots of other people who have kids around the same age as our daughter, and how are you doing this? And a lot of them were saying, like, oh, we in order to use an automated an aid system, like, you gotta use, you have to have diluted. And so I asked our endo about that, and the response was horrible. It was just I, it made me feel like I was an unreasonable mom who was pushing for risky things for my child. I thought the looting insulin was risky using it in the pump, specifically, they said that they only used it via injection, and that it was pretty much I would say, like, can we have a conversation? Like I understand everyone needs to have limits to their past practice. But can you help me understand why that's the clinic's policy on diluted insulin in the pump, and it just wasn't even a conversation at all. Have

Scott Benner 36:51
you had a chance to listen to some of the cold wind episodes I put out this year so far? Yeah, yeah. I have listened to most of them. It helps you. It helps you in those moments. Yeah, yeah. You just go, okay, you don't know. I get it, yeah, yeah.

Bethany 37:04
They just didn't know, right? I think is what? But again, like, I would have appreciated them being like, hey, like this just, you know, it's our policy, because we don't know how to do it, but if you want to, here are some resources. Here are some other people who do do it. We can help you get set up with them. It was just, you know, if you want a second opinion, you can, you can do that without knowing very well that. You know, doing that requires them. Nothing

Scott Benner 37:30
works that way. If you went to the grocery store and you said, I would really like some Haagen dais ice cream to the owner, can you show me to your Haagen Dazs ice cream? And he didn't carry Haagen da only carried a different brand. He wouldn't say, I don't carry Haagen Dazs. He'd go, let me show you over here to what we have, absolutely. Yeah, exactly. It's just, it's, to some level, it's self preservation, because if they go telling you go over here and find that, you might leave, which, by the way, you did anyway. But like you know, you might say, Why am I here? Why am I spending my money with these people, right? You know, or my time, or my effort, or whatever it is, you're giving away to be there and not gaining returns that are valuable for you. Yeah, yeah. Well,

Bethany 38:15
so that's where we were when we listened to the episode and I had pretty much closed the door. I was like, okay, like, I guess we'll try something different. I was looking into it, and then I heard that episode, you know, really validating that, hey, I'm not a horrible mom. This is a reasonable thing that's safe for kids like my daughter. I'm gonna push for it again. And so I'm a very determined person, and so when I said I'm going to ask them about it again, it wasn't like, I'm going to send, I'm going to call them and say, Hey, can we open this door again? I, like, was doing a literature review. I I pulled academic peer reviewed papers on diluted insulin in a pump. I put together, like, bullet point lit review on, like, here's what the research says. I put together pages, you know, I reached out to all of the people I knew were usually diluted, and I said, Hey, like, what? What's your doctor's name? If you're comfortable giving it, I'm putting together a list that our care team could consult with. And so I gathered all of this, and I reached out to them, and I said, I have done a lot of research on this. Will you at least look at what I'm look at what I found. And if you're not willing to do it, can you help me get connected somewhere? Can we just have this conversation again? And they didn't even look at it. They said, No, we won't look at it. You can go somewhere else, knowing very well I have an HMO and like, there's no one else in network. And so going somewhere else meant like filing an appeal to are you trying

Scott Benner 39:39
to tell me that what they actually said to you was you professionally. You've pulled a lot of them go yourself, essentially, but I have peer reviewed literature. Oh, do you here? What are these? My middle fingers? Yeah, you were stuck, and there's nowhere to. And they don't know how to help. And, you know, my father in law ended up in the hospital last week, maybe two weeks ago now, and my wife not his medical proxy, you know, and he's married still, but they're older and, you know, so they they have struggles sometimes understanding what's happening completely, and we're contextualizing all of it as you would. And so my wife was staying out of it. She's got other brothers and sisters, and they were more, you know, involved, I guess. And the other day, I just said to Kelly, I'm like, Hey, your dad's gonna die if we don't do something. And she's like, Yeah, I know. And I said, Okay. I said, it's our turn now. So we got in the car middle of the week, drove hour and a half to where he was at the hospital, went in, said our hellos, got him, sat down, and then I said, Okay, well, that's enough of this. I'm gonna go get the nurse and get all your notes, and we're gonna read through them. And I said this on another episode, but I'm gonna repeat it here, because it really fits with what you're talking about. My mother in law looked up like, Oh my God. Like, what horrible thing are you about you're gonna go speak to the nurse, that angel out there who's clearly smarter than us and and I'm like, yeah, she's a nice lady with and I and I'm not disrespecting her. I'm like, but she's trying to keep everybody on this floor reasonably alive. She's not walking around considering dad's life. That's what we're doing. And I said, so I went up to her, I said, Hey, can you come get your you know, could you bring the computer? And we'd love to look through his notes. Went through all of his notes. Nothing was happening, by the way, like they weren't doing anything for him. They were just feeding him. And like, we'll take him off his meds and see where that goes, and in a couple more days, I'm like, You're doing nothing. He's degrading, right? So we looked through his notes, my wife and I, my wife and I came up with the three things that needed to be addressed. I went out into the the nurse's station. I said, I need a dry erase marker. We came back in. My wife wrote her phone number on the board. Our three questions after the questions are answered, If this is the answer, what happens after that? If that's the answer, what happens here? And then looked at my father in law and said, when they come in tomorrow, you call that number and put us on the phone with whoever is standing here, right? And you know he's going to be out of the hospital another day, and he's doing way better now. He was an afib. He needed to be, I don't know if you know the term cardio inverted. He needed to be shocked to get out of afib. He has a triple A that needed to be assessed to see if it needed surgery or not, and there was a medication switch that that needed to be considered. He we got him shocked. He's out of afib. He's on the new medication. They're going to watch him for two days in the hospital to make sure it's okay with him. They got a new measurement on the AAA. It doesn't need intervention right now, and he's gonna go back every six months and have an ultrasound. My father in law went from like not feeling well to looking like he was 25 years older than he was, to being okay again, because someone took five goddamn minutes to look at all the information they already had, give them an action plan and then hold them to it. Yeah,

Bethany 43:06
that was it. Yep. You know, I work in the same health system that we were getting care at, and I think what was really helpful for me, I kind of got to this like, place before the episode, before I listen to the episode of like, acceptance, of like, you know, they're not going to be helpful. I guess we're on our own, and we'll just figure this out, to being like, No, I'm going to push like, I'm going to push and I'm going to advocate within this health system. Because this is what I do for my patients. I go the extra mile, right? If someone needs something and I don't know, I say, I don't know, let me go look this up, or let me consult with this colleague. Or, you know what? I don't do that, but here's a referral to someone who does, and then I follow up and make sure that they got connected. I'm doing the right thing, and this is what we should be doing, and this is patient centered care, and I'm not going to tolerate this for my kid anymore. And so I pushed a lot very like, appropriately and very kindly, like I never yelled. I know, you know, I kind of know how to advocate in a way that is still appropriate, and I think they just didn't like it. You know, eventually we I reached out. Thankfully, my daughter did qualify for because she's so young, qualified for a program called CLTs children's long term support, and then she gets, like, a special kind of Medicaid for for kids who have disabilities. And so that opened up more options in state for us, and so we reached out to the other children's hospital nearby, and it's been like a night and day difference. And I told them, like I did the same thing. I came to them and I said, this is what we're looking for. This is what we've done in the past. In the past, it hasn't worked. You know, in order for her, I don't work in a job where I can babysit her, Dexcom. All day, my husband doesn't we need an automatic insulin delivery system so that we can sleep and so that she can be safe when she's at preschool. Right? We've tried everything. This is what we want to do. We want to do diluted in the pump and the the they were really receptive to it. They said, We've never done this before, but we're willing to figure it out with you. They looked at all of the literature. They said, Yep, I think we can do this. We also got we're working with someone from Integrated Diabetes too, who's really familiar with diluted in the pump, and then she's coordinating with our care team. And so now we're at a really good place where they're actually where we're at, like, as of today, is there. We're waiting on the dilutant to come from the manufacturer. So we're, like, in a really hopeful, positive place now, it just took a lot to get here.

Scott Benner 45:55
Yeah, how crazy is it that the extra mile means getting it done.

Bethany 46:01
It's very Yes, yeah.

Scott Benner 46:02
It's bizarre. Doggling. No, it's bizarre there. If you could step back and take a long enough view of of a life in the medical system, you're going to have your first problem. Whenever you have your first problem, mostly you're either going to live or you're going to die. There's things that happen all the time. You get the flu, that's a hit on you, right? Most of us live through that when we're younger. You have your time selected me. There's some people have, you know, a hemorrhage, but he got through it, right? Yep, that hemorrh could happen in the middle of the night. I know you thought about that, right? And, oh, totally Yeah. And so he makes it through great. We're lucky, but every time something happens, it's a ding, and we think that we're gonna go to a hospital, and the hospital's gonna is gonna shine us back up to where we were before we got dinged. But that's not their job. Their job is just to make sure you don't die and then send you back out to wait for the next time that something befalls you. Yep, it's hard to think about it that way, but that's the system. If you want something else, you gotta push for it. Yeah, we're rich or famous and be paying people and say, Look, scotty's plan here is, I don't want to go backwards. I don't just want to not die today. I'd like to live longer. Is that a possibility? I'd like to live healthier. You know, like that is not everyone's that's not the goal. Now, if you're in a catastrophic situation, then, yes, that's the goal, right? Like, if you have a car accident, or you fall off of something, you know, you know, I don't know, you cut you off your head, whatever. Like, when bad stuff happens, like, you know, then, then you're in an emergent situation, and they put your body back together in pieces. Like, right now, you're a model. But when it comes to diagnostic stuff, there's nobody. There's just, there's there's nobody whose job it is to be diagnostic about your health. And that's why you'll do it yourself, or you'll just degrade faster. That's it.

Bethany 47:55
And I think a huge piece that I don't know how to find it right. I think you just almost have to stumble upon a provider who is who has these skills. But I think a big difference between our previous care team and our current care team is that our endocrinologist now treats us like a human and is supportive and encouraging and has really wonderful interpersonal skills. We had a phone call just to kind of go over some logistics. And I think at some point I just like we were talking through just, I don't know, I don't even know what you're talking about, but I took a sigh, and she goes, You know, I don't know if you need to hear this, but I just want you to know you're doing a really great job. You're advocating for your daughter really appropriately. And you know, I'm not nervous about doing this. I'm not scared. I think that you've thought this through, we've thought it through, and I'm confident that this is the right step for her. I'm not nervous. I don't know if you are, but I'm not little bit of encouragement, yeah, and I like, teared up in that moment, because I don't think I realized until she said that, like, how much I needed or how helpful I guess I didn't need it, but I think how helpful it was for me to hear that from her doctor, to just hear that confidence and like, that reassurance and that empathy we hadn't had any any interaction with a healthcare provider for my daughter for a year and a half leading up until that moment, it

Scott Benner 49:23
felt like that. Yeah, and for you to know that this next effort you make isn't just gonna end in failure, that's a thing I don't think, I don't think we appreciate enough. You know, you hear all the time like, oh, you know, that person's non compliant. They don't try. And I'm like that. That's not what happens. They tried so many times and it didn't work out that the expectation here is this is not going to work either. This next thing you brought up is not going to help me. And so I'm I'm done not I'm not going to try like I've tried enough now it feels hopeless. It's it just. Is, it's at the core of why I talk about diabetes the way I do, because I want you to have a win. Yeah, you know what I mean, I want something to happen that you go, God damn. I meant for that to happen, and it happened like, I wonder what else I could make happen. And, you know, like, so start very basic, and give people a chance. Let them understand the basil and some how important it is. Let them understand how important it is to cover meals. You know, the so the timing of the insulin is commiserate to the impact of the food, like that. So that you can go, wow, I just ate something, and my blood sugar did not spike to 300 and I didn't get low afterwards. This is great, you know, and then, and then you build and build confidence, like learning to hit a baseball, like you just I'll tell you this my, I think my son was, God, He's 24 now, I think he was 15 or 16, and his baseball team. They were good. A lot of boys in that baseball team went on to play baseball in college. So like just to give you some context, and they were heading to Florida and to be in this tournament. And I went with him, and on the first day, like they had barely been there for 10 hours, they were already going to play baseball games hot out. And what they learned was they were, they were being matched against this team of kids who weren't just gonna go to college and play like these were the kids like, you know what I mean. And our sons were brought in like sacrificial lambs, like, and we realized very quickly that there were 20, I'm not kidding you, 20 pro scouts there to see the pitcher on the other team? Oh, no. And what? What our kids were, were good players, maybe better than good players, to put up a fight so that this kid could come out and pitch and get drafted and we could all go to hell afterwards. And so we're standing around before the game, and this kid's in the 90s, like, thrown in the 90s at 16 years old. And my son's like, what do I do? And I said, don't change who you are. Yeah. And he goes, wait what? And I said, take your swing. Like, even if it's a full second late, even if you hear the ball hit the catcher's glove, and then you swing like, like, be yourself. Like, don't change how your feet work. Don't change how your hands work. Don't try to dominate the situation that clearly you know you you don't have the ability to get in front of right now. Like, just be you. And he fouled the kid off a couple of times before he struck out, and when he came back, he looked like he hit a home run. That's awesome, yeah. And I was like, How'd that go? Like, through the fence, and he goes, I fouled him off. And I was like, yeah, exactly. And, you know, not many years later, my son could hit guys like that, no trouble. And that's kind of how I think about all of this really, you know, like, I don't know Bethany how long you've been listening, or how long the people who are listening to this episode have been listening, or what you're doing, but I really only just apply my life theories to diabetes. It's no different. Like, I don't handle diabetes differently than I handled walking my son through baseball or my daughter through high school, or any of the, you know, my my mom's illness, or I just apply common sense, stability, patience. You know, we make good decisions when we see somebody who's not on our side. We go somewhere else. You know, like these little basic life ideas. They just, they work on everything. Yeah, I want to give my secret away here. I guess everyone knows if they're listening right. Diabetes is not any different than learning how to hit a baseball. It's slow and steady, and you don't change who you are. You just, you keep doing what you're doing until it starts to work out for you. That's pretty much it.

Bethany 54:00
Well, and I, and I think the thing that the podcast does, too, is that not everyone has those skills going into that diagnosis of diabetes, right? And so it gives them, it gives them a fighting chance to be able to develop some of those skills and some of those tools.

Scott Benner 54:19
Yeah, you get to benefit from the crappy life I lived, and all the all the struggles that I went through, and the things that I had to overcome and overcome and overcome over and over and over again to get me to the point where I could look at that kid and go, doesn't matter if you strike out. Really doesn't matter at all. Just be you and and because if you would have asked 20 year old me, I would have said, You got to hit that ball. If you don't hit that ball, you're not going to college like, right? But that's not the case. Wasn't the truth, nope. But I would have felt like that without all my experiences in between. And I can thank Arden's diabetes for some of that, and, you know, and I can thank my. Mom's illness, and my parents getting divorced and injuries that I've had when I was younger, and being broke growing up, and all of the other things that put me in that situation where I had to, I had to fight, but remain hopeful. And, yeah, yeah, I just, I'll tell you right now, I am one of those people, like, I wake up every day and I'm like, this will be better. Yeah, I

Bethany 55:23
am too. I'm a pretty hopeful person, and so I think, you know, before listening to the episode, you know, I was kind of in a place where I was just, I was it was hard, the hope was still there, but it was harder to see because I was just feeling so defeated because I was using all of the tools from the Pro Tip series, and, you know, I was implementing everything that we were learning in books, but like, when you only need five units over the course of a day, and you don't have support and encouragement from the people that you think should be in Your Corner, like, so her a 1c right now is at 7.3 and like, we've worked really hard to do that and to get there, but like, we we that's not good enough still. Like we want to get it lower right, like we want, and that's why we're pursuing more of this. Because we did that with, like, no sleep. We did that with like my husband and I, dividing up the nights and being zombies at work and, you know, like doing all the things, not being able, not being as present to be as we want to be for our older kids. You know, we did. We got it there with diabetes, calling the shots and taking over a lot of parts of our life that we didn't want, we didn't want it to be taking and so that's kind of what we kept telling her former care team was like, Yeah, I see like, by all your measures of success, we're checking those boxes. But I'm telling you, we are. We are struggling. We are struggling. This isn't sustainable. It's not healthy for our family. We don't want to, you know, swap out Cora's, you know, long health for, like, the health and well being of our family. Yeah, I'm,

Scott Benner 57:09
I'm six months away from being a workplace shooter. So while you're telling me I'm doing well, I'm not, and I haven't talked to my eight year old in like, a week so and my, my husband and I haven't had sex since January, like, you know, like, there's a lot going on here. Yeah, right, yeah,

Bethany 57:23
I gotcha. But they just, like, had no solutions, like, there was no no support, there was no ideas, there was nothing. And so it was just, I was feeling really defeated, and then I heard that, and I was like, that was kind of the hope that I needed, right, that, like, there is something else that we can try there, you know, I can push, I can advocate. I'll find someone who's willing to do this. I'm not being unreasonable by asking this. I'm not a bad parent by asking these questions. And so that was one reason why I really wanted to come on to to just be able to, you know, if I could just do that for even one person listening, that's that's worth it to me.

Scott Benner 57:59
Do you happen to know the episode that helped you so much? Man,

Bethany 58:03
I'm trying to remember. I know that the I want to say the dad's name was Andrew, okay, it started with an A, oh, wait, was

Scott Benner 58:11
it an OmniPod five episode?

Bethany 58:13
No, because I think, I think his daughter is looping so on OmniPod. But he was using a combination of diluted and then they also were using like, FIAs or loom Jeb, I can't remember which one, so they had some like, I think he called it like a Frankenstein combination of insulin that was just working well for their daughter. Interesting. Yeah, I think it aired.

Scott Benner 58:40
This is my fault. I put on a lot of Con, a lot of cut. I

Bethany 58:44
mean, you do. It's my fault.

Scott Benner 58:46
I apologize. No, but it also, it's funny. It kind of doesn't matter, because, because what, what I hear, is that you heard someone else's story, and in that story somewhere, you were like, Oh, this is the thing I'm missing. Yep, right here. And each story has, I'm not going to be humble for a second. I think each story has about five or six of those. I can't expect everybody to listen to every episode, but there are times like in the Facebook group, I'll see somebody like really struggling, having a terrible struggle, and I'll think, oh gosh, if you would have just listened to this series, you'd be okay. Or if you would have just heard this interview, that would have helped you. And you know, you do your best to say, oh, try this episode. You know, that kind of stuff. But it's, I mean, the Facebook group has think it does like 125 new posts every day. It's, I can't obviously keep up with all of them.

Bethany 59:40
I looked it up. I just went to my Facebook and I searched because I went after I listened to it, I went to the Facebook group, and I said, I just listened the app the Facebook or the episode was called, called Adam's Song. And I went and I posted in the group, and I said it listening to Adam's Song and feeling so validated my daughter. Also, you know, 18 pounds when diagnosed a year ago. And we've been struggling wanting to prescribe diluted in the pump. And then I think that someone actually got us connected. And Adam and I spoke a little bit, just so I could get some resources from him too. So it was really neat. Episode 1105,

Scott Benner 1:00:17
there we go. It was in January of this year. That was only a few months ago. Well, look at Yeah, oh, wow, geez. I really hoped you. Bethany, yeah. Really have I should start. I want to. I kept asking for people to name a baby after me that's clearly going nowhere and try something else, Christmas cards or, I don't know I had this card's good idea. I live such a strange life. Seriously, I sincerely mean that because I started doing this thing in my house. My God, I started doing it when Arden was only diagnosed for a year. So that's 2007

Bethany 1:00:53
like, where we are, yeah, 2007

Scott Benner 1:00:56
and I was like, I'm gonna write a blog. And I was really doing it to bring awareness to diabetes at that point, you know, I'm sure I've said this before, but at some point, there were so many diabetes blogs not like that anymore, but there were well over 4000 diabetes blogs. It was in vogue. It was in vogue. You know, blogging was huge. And I was contacted once by a pharma company, because back then, the the pharma companies and the device manufacturers would kind of glom on to the bloggers to try to get the word out about their companies and their stuff like that. Pharma companies did these things where they'd have, like, these blogging conferences where they basically fly you somewhere and feed you for a couple days and tell you stuff that they wanted you to know about the you know, they'd say things like, yeah, you can write about this if you want, but there's no pressure. And I was like, there's no pressure. You just blew me out here. I just got to see an Indy car ride around a lot, like a track, like, privately. I mean, it feels like there's pressure, but there was, I mean, there genuinely wasn't, yeah, as a matter of fact, after that visit, I went home and I wrote about the, like, insulin pricing problems and but nevertheless, like, there were a lot of people writing, and I just one day was like, I'm not this is ridiculous. Like, how many people do you need to do this? Like, right? Like, how many goddamn blogs are there? And I stopped for a while, but I missed it a lot, and I came back. I did come back to it, but I came back to it with a with a renewed idea of what it should be and and in the beginning it was a lot of, like, raw nerve, like, this just happened. And then people would be like, Oh my God, that's happened to me. And I'm like, that's great, but it doesn't help anybody. Like, I'm like, I want to, if I'm going to spend my time doing this, like, I'd like to see people, like, elevate, not just feel like they're not alone, which is nice and valuable, but not enough. And that's when I started like, saying, like, to my wife. I'm like, I'm going to share how we actually do this, like, like, instead of just being like, like, saying, like, vanilla stuff. And I'm like, why don't we tell them how hard? And say one sees this low, you know? And so started doing that. It grew into, you know, other stuff. I wrote a book. That book got me into an interview. At that interview, this person told me I was good at talking to people. Like, a year or so later, blogging was falling apart, and I was like, Oh, I'm gonna make a podcast. And I didn't make any money doing it for years, really. And then it started to pick up steam a little bit enough that my wife wasn't, like, because in the beginning, my wife's like, this is nice and all, but are you going to make money? What's going on? Yeah, and she didn't mean with the podcast. She meant, are you going to stop with this podcast and go get a job? And because I had been a stay at home dad for so long, I was supposed to, like, transition into working again. And and instead, I was like, I'm gonna make a podcast. And I'm sure she was like, What the fuck did I marry? You know what I mean? Like, what is going on here? 100% sure. She was like, fucking loser. There were other guys, like, but it started to do okay. And I was like, I just kept saying to her. I was like, you know, if you can just wait a little longer, like, I think I can get this to, I used to say to her, like, I think I can get this to 50 downloads a day. And then I was like, I think I can get it to 100 and then eventually, I was like, I think I can get it to 10,000 and, you know, and there's, I've had days in this podcast, I've had 30,000 downloads and, and, yeah, and I, and I'm, you know, I'm like, I think I can get the month to 300,000 I think I can get this to 400,000 like. I think I get the year to 3 million like, like. And I kept doing that. And as I did that, I didn't realize I was becoming, I was becoming like a lot of things at the same time, right? And the podcast, not me, but the it turned into like a repository for information. It turned into a community for people. It turned into a thing where, you know, companies were like, hey, you've got, like, a really big listener based we'd love to buy, we'd love to buy an ad. And I was like, and my wife was like, Yes, he would like an ad. So yes, please. Please, because I had done it for so long without it, I'd written the blog. I always turned down. They used to offer you product bloggers like, you could get free pumps and CGMS and stuff like that, if you if you were like, if you had a contract with them. And I always said no to that, because we had good insurance. First of all, I don't want to seem altruistic. We had good insurance. Didn't cost us anything, really, $20 to get pumps and stuff like that. But I just said it like that, plus the, like, the $9,000 a year we paid for insurance. I could say no to that. And then when it got to be a podcast, I didn't know how much time it was gonna take. And then I was like, actively, like, I gotta get some ads. Like, this is, this is hard, but this is a lot of work. Oh, my God. Like, insane. You have no idea. Like, I don't want to complain, but I'm I have to be interviewed by the New York Times next week. And that's exciting to you. It is. But I actually mean, I have to be interviewed by the New York Times next week because I don't have enough time for that. Like, they're like, when do you want to do something? Like, when do that? Like, when do I want to do it? I was like, I make a podcast that a lot of people count on. Like, I like, I very little time, and at the same time, I'm still out there. I'm still a content creator. I'm still out there being like, hey, use my offer code at cozy earth.com to save 40% because if you do that, not only will you get amazing sweatpants, but cozy Earth will buy more ads, and then I have time, like I did yesterday afternoon, to have a one hour conversation with a gentleman named Dr Blevins from Austin, Texas, who's going to come on and do a deep dive into glps and inhalable insulin with me, because I have time to court him. He will return my call because I have a enough swagger in the space that it's like it's worth calling me back. Listen, I am able to spend an hour on the phone with him in the middle of the day, discussing with him, making him comfortable, coming up with a plan for what he wanted to talk about. I had to send him a microphone that's out of my pocket, like, you know, I'm not gonna ask him to send it back for me, you know. Like, then we're gonna record those episodes in the middle of the day and they're gonna get edited, and the editor gets paid money, and blah, and, you know, all this stuff happens. And then I, I'm on Instagram the other day, and I see somebody said, Why do you use us med for your supplies? And some person said because they pay him too silly. And I thought, god damn seriously. Oh my is that really, like, all the effort to making this thing legitimate and really being forthcoming about how we got to, you know, how I got to this spot and everything, and still that somebody's just like, hey, he's saying us med out loud because somebody's paying him to well, a yes, I am saying us med because I'm being paid to say it. But no, I didn't pick us med for money. I had my choice. Yeah, yeah. It was intentional. I chose them. And then you say that to them and you think they're not going to believe that, you know, like, but that's the truth. Like, I'm I built this thing up to where that I get to decide, Is it you, or is it Express Scripts, or is it this one, or is it like I get to decide who, who advertises with me, because they all want to, right? And so I chose, and I chose for a reason. And when you hear me in the ad say, I love the reorder process from us Med, I mean that like, you know, like, like, and I get to mean that, and feel good about that. And then all of that brush aside. The reason I went through all of that is so that your kid could be okay, Bethany, like you specifically. And it's a long way to walk to find your you and your son and your family, but like, if that's the goal, the rest of it's just the, I mean, it's basically the engine that allows me to do that. If that makes sense, I don't know how I got on this. I think I must be thinking about it, because that lady said that I took the US meds at for money piss off and made me sad at the same time anyway.

Bethany 1:09:03
Well, I mean, I think, I think it can be, I'm imagining hard to see those types of things right in the comments, but it I genuinely think that the podcast is making a difference. I think it would have been very easy for me in that, in that moment, to just be like, Okay, well, I guess we have to write it out a couple more years until she's older and, you know, we have more bandwidth, you know, and I can I it for the whole first year, I would hurt. I would hear people say, like, oh yeah. They're like, spiking. I'll just throw a half a unit at it. And I'm like, throw a half a unit at it. That'll tank my daughter, correction factors, 400 throw a half a unit at it. What do you mean?

Scott Benner 1:09:48
It's when they're little and you hear like other adults or even larger kids talk about it is difficult to wrap your brain around what other people are saying. For sure, yeah.

Bethany 1:09:57
I mean, it's just yeah. Yeah, and so, you know, I think the messaging we were getting is, this is good enough, yeah, it sucks, but you're going to have to write like, you can, you can. You don't have to stay, you know, you don't have to split the nights. You don't have to have diabetes be in the forefront, like, let her a 1c be higher, and then write it out till she's older, and then it'll be easier. Was like, the messaging we were getting and I think it would have been, I think there was a part of me at that time was that was almost like, well, I guess that's what we have to do. But then I don't think I would have stayed there, to be honest, like, I think I, at some point I would have gotten to this. But really listening to that episode was the thing that really motivated me to be like, No, I want, I want something different for my family and for my kid, like, this isn't okay. I'm not. I'm not, I'm not going to be complacent here.

Scott Benner 1:10:45
I'm so glad you found it first of all, yeah, it just, it's, it's lovely, and it makes me feel good, because there are days when I'm just like, my god, I don't have to put out this much content, or I don't need to do this, or, like, maybe I could go on vacation once, you know, like that kind of stuff. But then I wake up every day or or go to bed every night and get to see somebody, and I'm not over exaggerating. It's a, it's a content creator's, uh, bullshit move to say I hear from so many people, right? They don't, actually, but that's okay. I do. I actually do. And I get to, I think in the course of every 24 hours, I get to see about a dozen or more notes from people like you. That's great, and it keeps you going. You know what I mean? Yeah, like, because it can get repetitive, obviously, but like, it really does keep me motivated and excited to have conversations like this. And I tried to explain to somebody, like, I'm very competitive about it, like myself. And they're like, why does it matter? And I was like, I think it just gives me something to like, strive towards. Like, when you get to this level, like it you you could have the feeling like, Oh, I did it. I need something to like, fight for during the day. Yeah. I need that a little bit. So

Bethany 1:12:00
yeah, and I mean, the podcast was recommended to us when we were still in the hospital. We had a friend, my husband, I met in college and got married after college, and so we had a friend from college. You know, after I had made a post on Facebook about about our daughter's diagnosis, we had a friend reach out to say, like, hey, like, I was actually diagnosed with diabetes as an adult. You need to look into the juicebox podcast. It'll be really helpful for you, kind of when, you know, when you're ready, when you have your feet under you, like, make sure you check it out. And so, yeah, like, I think we started listening, you know, once we kind of got settled in, and we were, you know, a few weeks out from diagnosis, and we were both just listening, we really wanted to get to get to a place where we felt like diabetes wasn't running the show. Yeah? Oh,

Scott Benner 1:12:44
it's wonderful for me to hear. I really appreciate you sharing that. Seriously, I can't tell you that there's, you know, like I love making the podcast, like I genuinely do. But there is even times where, like, I'll get halfway through an episode, I'm like, I don't know if this is even about diabetes. I just, I'm having fun talking to this person. And some of the episodes need to be like that, and some of them are. I listened to one the other day. I'm not gonna lie to you, I listen to my own podcast the other day.

Unknown Speaker 1:13:10
I love it. I

Scott Benner 1:13:11
was looking for something to listen to, and all the people I listened to hadn't put out content. I was like, Well, you know, who I know puts on it out today. You did. And I went and looked, and it was an after dark episode, oh god. What was it called? It was an after dark episode called Black squirrel. And I listened to it, and I was like, this, this is funny. This is like, funny, great, thoughtful. And I learned something about mental health. And I left, and I was like, the guy making this podcast is doing a good job,

Bethany 1:13:43
pretty good right now. And

Scott Benner 1:13:44
by the way, the lady that came on was fantastic, and so so willing to share her story and be honest like you are, and that's where it all comes from. Like if I had to come on here and talk by myself, this thing would have been over years ago, and if I would have done the thing that other people have tried in the past, which is just bring on people from the community, like the known people making air quotes, those people just they're full of most of the time. You know what I mean? Like, they've got, like, relationships with companies, and they're like, Hey, I'm here to talk about the and, and don't get me wrong, like, I have sponsored episodes like, yeah, you'll turn on an episode pretty soon. It's going to be a lady talking about her ever since CGM, I'm very specific about it, like that episode I didn't charge them for I just we already do business together. And I said, I think it would be beneficial if you really want people to understand what the CGM is, to have a real user on but let me just talk to her. They did that like they didn't send me a bunch of questions. They didn't say, like, ask about this or do that. I looked at the CGM, I figured out what my questions were, and I talked to her just like, I'm talking to you and you know, and so, yes, that's a business thing, but at the same time, you'll know that up front, like, it's not, like I'm not. Going to sneak it in, and I'm going to be like, hey, these people buy ads on this podcast is a great episode where this lady's going to tell you about it, listen to it, or don't, like, I don't care. Like, you know, like, it's I don't know, right?

Bethany 1:15:11
Well, I think a big piece is community too, because it's already an incredibly or it can be a really isolating diagnosis, I think especially for us with with our daughter being diagnosed so young. Yeah, you know, I try to connect with other parents in the community, and I certainly have, and I've met very I've met a lot of really wonderful people, but at the end of the day, you know, their their experiences are just not even in the area of like, what, what we're dealing with, and I'm sure they're wrestling with problems that, you know, we don't have to wrestle with right now. So not yet,

Scott Benner 1:15:47
Bethany, but you will not yet, and then you'll be thrilled to have had a contact with them. You know, absolutely.

Bethany 1:15:53
Yeah, right. But there's just so few people it feels like, at least, who have kids diagnosed at this age and even like this weight too, like her being so small and being so insulin sensitive. Like, I've met other other parents. You know, it's kind of rare when you meet someone else who has, like a toddler, and you're kind of like, oh my gosh, you're you also have a toddler with this thing. But I think even even then, sometimes it's hard to feel like there's a lot in common, because our my daughter's so small. She was already tidy before diagnosis, she was like in the fifth percentile, and then she just completely fell off the growth curve for the months leading up to her diagnosis, and she's back on track now and growing and thriving and doing a great job, but, like, we just have some challenges with her being so petite that Sure, I just don't think a lot of other people have dealt with what did

Scott Benner 1:16:48
she weigh? Diagnosis,

Bethany 1:16:50
she was 17 and a half pounds. Wow.

Scott Benner 1:16:54
Arden was 19 pounds. Yeah,

Bethany 1:16:57
they tried that. This, actually, it makes me angry thinking about it now. But the resident put in the wrong order, when, when Cora was, when my daughter was diagnosed, and they gave her, I mean, she came in, it was like, I don't know, 10 o'clock at night, her blood sugar was like, in the four hundreds. And they were planning to give her a unit of long acting to kind of start things and see how she responded. But the the resident actually put in an order for a unit of rapid acting and so she got, like, a unit of Nova log. And she didn't go low by any means, like she she kind of went down to the 80s, but she was like, in the three hundreds. And at this point she doesn't have CGM, so we're just checking her finger. And I just remember everyone being like, oh my gosh, like, kind of flustered, because I don't think that was the response that they were anticipating would have. And then they had to look into it. And then I just remember in the morning, them talking to us about it, and being like, this is a good thing. Now we know that core is really sensitive to insulin. And I was like, I don't know what you're even talking about. I don't understand any of this. I don't understand what happened. Yeah, now I do, and it makes me angry that they weren't more transparent with us. But I don't think it would be useful to do you think

Scott Benner 1:18:10
she was really that sensitive, or do you think they just gave her the wrong stuff, or too much of it?

Bethany 1:18:14
Probably both. I mean, she was in the four hundreds, and they gave her a unit, and I think initially, like some of her sensitivity, like her insulin sensitivity, factor was, like 400 and so they checked her, like, an hour later, and she was fine. But I also, like, there's a piece of me that like knowing how sensitive she is to insulin, knowing they only did a couple finger sticks, like, how low did she get? How low did she actually get that night

Scott Benner 1:18:41
they don't know. But listen, I'm gonna say something right now, and you can be upset if you want to. Mostly no one knows anything. Okay, true society is holding on by a thread. You have no idea. It works fine for some reason, like you're not. We're not going to spin off our axis and fly into the sun or anything like that. But it's all just everything just dances back and forth on a precipice constantly, and yeah, and a lot of it's just luck or the randomness of society or life, or whatever you want to call it. It doesn't really matter. Things work out. Generally, when they when the when the fringes get taxed, that's when you see the weaknesses, yeah. Yeah. And then you go, Oh, okay, this is all much more tenuous than I think it is,

Bethany 1:19:24
yeah, and I think that my job often reiterates that to me, and that's that's often what fuels my anxiety for my kids, right? Because I think that because of the work I do, I get to see just how delicate that balance is all too I hear the worst case scenarios. Well, that's

Scott Benner 1:19:43
the what I was gonna say, but you still hearing the problems. It's like, when you get on the internet and they're like, oh my god, Dexcom sucks, OmniPods, horrible. T slim piece of garbage. Blah, blah, yeah, all you're hearing is people who are complaining, oh, I just hear the worst case scenario all the time. You're hearing from people who. Are who have spun a little bit off their axis at the moment and and you know you're trying to get them back to good I always say the same thing about a friend of mine who's a police officer everybody bumps into during the course of the day is lying to him or breaking a law. And before you know it, you think that's who everybody is, but it's not. And so I would leave you with this Bethany worry is a waste of imagination.

Bethany 1:20:21
I know, I know this is what I tell. I tell patients worries like a rocking chair, right? Lot of energy. Don't get you anywhere Exactly.

Scott Benner 1:20:28
It's if something's gonna go wrong, it's gonna go wrong, and if it's not, it's not. And worrying about it is actually making something go wrong that may never happen. Yeah, now I don't want you not to be prepared. But see you do that, you have thought ahead. And that's not from worry. That's from, I don't know, it's not your anxiety that's making you think about, like, I want to bank good health now, in case she has some trouble in during her years, where she's, you know, pushing back like, that's, that's good, common sense and thoughtfulness, not anxiety, yeah,

Bethany 1:21:01
well, and I think too, right? Like a healthy dose of anxiety, not a balanced anxiety, can be motivating, can lead to you to taking those steps, being thoughtful. When that gets unbalanced, right? Is when I think it can lead to that unhealthy place. And so I think that has been, that has been the thing that I've focused on the most for myself over this last year. Of like, where is that balance at? Is this helpful and is it going to help me do the right thing, the conscientious, you know, safe thing for my family, or is it getting me to a place that's not serving me

Scott Benner 1:21:33
good for you? Hey, I by the way, I agree. I I saw something the other day from a content creator, and it made me so mad that I was like, I'm gonna try harder. Like, I know I'm already trying hard enough, but like, I have, I've have an idea. It's on my whiteboard. I should be doing it, and I'm not. I'm like, God damn it. I'm gonna do it. I'm like, because if I don't do it, then this person's gonna half ass it and put it out there, and I can't be okay with that. And like, so there's that tiny bit of anxiety about, like, I can't let them get ahead of me, and I can't and I can't let them take this thing that I've built up so well and trash it with these. What do I want to call it? Like, social media stunts that get clicks, you know what I mean? So, like, I'm gonna, um, I'm gonna, I'll just do it instead. I was like, I'll tax myself and I'll do it so that, so that they don't mess it up. That's very vague. I won't be saying anything more about that. That's okay, yeah. Anyway, more to come. Yeah. Oh my god. What do you say? Thank you very much. I really, really do

Bethany 1:22:41
appreciate your time. Yeah, thank you, Scott. Well, it's my pleasure. It

Scott Benner 1:22:44
really is hold on for a second for me, okay, okay, sounds good.

A huge thanks to Dexcom for being longtime sponsors of the juicebox podcast, dexcom.com/juicebox, head over there. Now get started today. This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes. The episode you just enjoyed was sponsored by Medtronic diabetes. Learn more about hyperglycemia and what you can do about it at Medtronic diabetes.com/hyper if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective the bold beginning series from the juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to juicebox podcast.com and click on bold beginnings in the menu. I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrongwayrecording.com.

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