#1127 Bare Necessities

Deborah's son has type 1 diabetes. He uses the Ypsomed pump with Cam APS.

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

Scott Benner 0:00
Hello friends and welcome to episode 1127 of the Juicebox Podcast.

My guest today Deborah has two young boys her youngest Jack was diagnosed with type one diabetes when he was three years old are some Hashimotos in the family looks like Jack is using Dexcom with the IPS omad pump and little DIY algorithm stuff going on here. Ooh, there's a lot going on here. You'll enjoy this one. 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. When you place your first order for ag one with my link, you'll get five free travel packs and a free year's 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 juice box at checkout to save 40% at cosy earth.com. If you're looking for the diabetes Pro Tip series that runs between Episode 1001 1025 In your podcast players, Apple subscribers get those episodes ad free this episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us met.

Debrah 1:57
I'm Debra and I'm the mom of Jack who is five and has type one diabetes. And I have another son Harry who is turning eight on Sunday. Jack

Scott Benner 2:08
and Harry Jack has diabetes. Yep. Okay, Harry is eight. How old was the Achlys? diagnosed? Three. And how old? Is he now? Five? Yeah. Do you have any autoimmune issues? Say

Debrah 2:25
my brother in law has Hashimotos. And my nephew has congenital hypothyroidism

Scott Benner 2:33
so we can blame your husband. That's good for your mental health.

Debrah 2:37
Well, the nephew is on my side to blame.

Scott Benner 2:43
Does it surprise you to hear that you look like you? There's no way you have two children? Yes, thank you really? I don't get to see people very often. But if you told me you were in, I don't know. High School, your second year of university? I'd be like that makes complete sense. Why do you look so young?

Debrah 3:04
I have no idea. Because you'll know I've not slept in the last few years.

Scott Benner 3:09
Are you telling me you looked better? 24 months ago?

Debrah 3:11
I really did.

Scott Benner 3:12
Oh my gosh, that's amazing. Do people in your family look young?

Debrah 3:17
Well, that they would like to think so. Yeah. I would

Scott Benner 3:19
like to think sit to someone told me on my birthday. My birthday was the other day. And that was not me trying to get you to say happy birthday to my birthday was the other day. And I was getting a lot of texts, which is lovely. And notes online. And somebody said to me, how old are you? You're much younger than me, right? And that person was like 47. And I thought like the we've known each other a while, you know, I'm like no, no, that's ridiculous. I'm like I'm older than you. I'm 52. And she's like, No, that's not right. Like, I wasn't even sure if you were in your 40s as like all this is wonderful. But inevitably it's it's really wasted because I'm married. And I'm assuming Kelly just looks at me. And she's like, Oh, it's that guy that won't leave my house. So anyway. Alright, let's figure out a little bit about Jack's diagnosis. You were How did you figure it out? Say

Debrah 4:16
Jack was at nursery at the time. And in the days leading up to his diagnosis, we noticed he was going to the toilet more often. And I actually put a timer on my watch and notice that it was every half an hour. In the busyness of life. I didn't really think about it again. And then a couple of days later the nursery called to say that Jack was quite lethargic. And again, didn't think much of it. It was only I think it was a Wednesday morning he woke up and said he had an earache. It was pulling his ear and so we thought okay, we'll take him to the GP and get him some antibiotics. And it was actually my mum who took him because I was working and still work full time. And I said mum when you're there, can you ask them to take a urine sample? Because I'd noticed he's been getting into the toilet more often. And the GP said when they took the urine sample that there was sugar in his in his urine, not to worry, but to go to a&e to find out what's, what's going on. When we got there. My husband went to meet my mom, and they took a finger prick. I think his bloods were 26 which is by your standards for seven, five.

Scott Benner 5:40
Okay. How long did you think this was going on?

Debrah 5:43
Oh, not long. It can't have been long weeks because he wasn't ill he didn't go into DKA he was he was fine. And why days went by between the first and, and some regression and bedwetting that we just thought for a three year old. This isn't unusual.

Scott Benner 6:03
I don't mean to cut off your story, but A and E.

Debrah 6:08
Accident and Emergency er.

Scott Benner 6:11
Emergency Room accident and emergency. Okay, that makes sense. It's not a great TV show, though. a&e, or wait a minute on British television. Is there a show called a&e that's at a hospital because hospital shows are very, very popular.

Debrah 6:31
We have a show called casualty. Oh,

Scott Benner 6:34
how horrifying. Exactly. Do they were the funny environment hats. You wouldn't think they were funny. You would think they were firemen. You mean the scrubs? No, no, when the firemen Come in? Did they have like, do you know that the hats that firemen were in England are different than the hats that they were in America did not know that. They are I don't know why it's a design choice. I'm assuming? Yeah, we know all kinds of stupid stuff that I'll be saying. As we're talking today. That mostly I know from the internet and television. Okay, so I'm gonna guess you're not in the hospital very long. But it was also during COVID.

Debrah 7:13
Yes. Oh, tape at 21.

Scott Benner 7:17
How did that go that and what did they do?

Debrah 7:19
So we were behind masks, as everybody was. And the masks stayed on all throughout the time we were in hospital. But I would say other than that, we were coming towards the end of COVID. So there wasn't really anything other than testing him for COVID, of which he was negative. It was I mean, we were too consumed in understanding what type one was all about to really notice. COVID?

Scott Benner 7:47
Do they move you into the hospital? I assume? Yeah.

Debrah 7:51
So you go into the triage room to get assessed. And then they move you up to the ward when you're when you've been diagnosed or where they know what's going on. And that's where we were for five days,

Scott Benner 8:05
five days. Okay. Now, do they educate you there? Or is this about stabilization.

Debrah 8:12
So they do educate, where they educated us there because Jack was stable, he hadn't gone into DKA. So what happens is, the days that pass, you're met with an ESA consultant, a psychologist who try and give you a whistlestop tour into what your life is going to be like?

Scott Benner 8:38
How did you find that experience?

Debrah 8:40
extremely overwhelming. I am a note taker. And I remember the nurses saying everything that you're writing down is in the blue folder that I've handed you. And I had to keep explaining to them that actually I need to take my own notes. So I remember whilst also dealing with Jack's condition, having to justify how I remember information. I

Scott Benner 9:04
thought you were gonna say explain mine. That's, and your husband's taking in the information differently.

Debrah 9:12
So my husband was actually at home at the time. I mean, yes, he doesn't pay information differently. But he wasn't there for the meetings. He was at home looking after picking after Harry. And so he came and went as he could

Scott Benner 9:30
to say it felt to you like this was on you. You're gonna have to understand it, and you're gonna have to pass it on to somebody else. Yeah, did that help you? Yeah,

Debrah 9:40
I think so. I think as as most people who listen to this podcast will know you find your kind of type one community, don't you? And actually the people who I speak to we talk about the fact that in those of us in a relationship, one of you takes complete control of everything and teaches the other One in most cases, it's very rare that both go in, kind of roll up their sleeves from day one. Because it I mean, again, it depends on the dynamic of the relationship. They worked well for us and worked well for me to be armed with as much as I could.

Scott Benner 10:17
diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US med has done that for us. When it's time for art and supplies to be refreshed. We get an email rolls up in your inbox says hi Arden. This is your friendly reorder email from us med. You open up the email, it's a big button that says click here to reorder. And you're done. Finally, somebody taking away a responsibility. Instead of adding one. US med has done that for us. An email arrives, we click on a link and the next thing you know, your products are at the front door. That simple. Us med.com/juice box or call 888-721-1514 I never have to wonder if Arden has enough supplies. I click on one link, I open up a box. I put the stuff in the drawer. And we're done. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three, and the Dexcom G seven. They accept Medicare nationwide, over 800 private insurers. And all you have to do to get started is call 888-721-1514. Or go to my link us med.com/juicebox. Using that number or my link helps to support the production of the Juicebox Podcast. Yeah, I think about it, like I mean, if you're, I guess lucky enough in this situation to be to very like minded people, then maybe you can learn at the same pace in the same direction. But like Kelly, and I don't think alike at all. And if you made me learn something, the way she learns it, I'd be confused and disoriented personally, and I and when I talk, I think she doesn't understand me at all. Like, I know this is odd to say because I communicate for a living. But the person who really doesn't understand me the most is the person I met. So like the way my brain works, it's just not. It's just not how hers works. So it's just it's it. I think it makes sense. Like, for me, it makes sense that one person absorbs it comes to a, you know, an understanding and then starts to parse it out. I think sometimes the problem you can run into is if you choose a person to take that task on, and then they don't get it. Now you're really lost. You know? That it's fascinating. I have to ask you, because I'm just going to wonder the whole time I need to get it out of my head. How old are you? Like I swear to you, you're not 26?

Debrah 12:54
Plus 10 Oh, wow,

Scott Benner 12:56
good for you.

Debrah 12:57
It's lovely, actually plus 11. Oh, 12.

Scott Benner 13:00
Excellent. You are doing great. I swear to you. I'm like she had these kids. When she was a teenager. This is what I'm going to find out. I'm not kidding. I'm sitting here thinking how do you own a home? Like Like, I'm not even old enough to like, have a mortgage Are you? And And my other question is, do you pick Harry because of Prince Harry? Or is that just the name you like?

Debrah 13:24
And then we like, okay,

Scott Benner 13:27
because now you say it and when you're talking? It sounds like I'm watching? Like, bad tabloid TV in America. By the way, I think that girl is gonna leave him. Not that's neither here nor there. But don't imagine that that can last. I'm with

Debrah 13:44
you. I'm right, right. Yeah.

Scott Benner 13:47
Okay. I knew it. I knew what I saw. Okay, that's all the health care system is different. So how different? Are you concerned? You sit there thinking, Oh, no, our insurance isn't going to cover this? Or like, what's the process around? Getting situated?

Debrah 14:07
Yeah, so thankfully, in the UK, we have the National Health Service. So all medications or free. All visits to the hospital are free. So we don't have to take on that additional financial burden. Thankfully, that being said, I don't know how much of the UK press is reaching you. But our NHS system generally isn't isn't great. So things take a long time. We are in talks about pay for our nurses and doctors, which is causing strikes in the country. So it's not, it's not great. But all of that being said the team who look after Jack are amazing, and have made the process as easy as possible for us. That's

Scott Benner 14:50
wonderful. So as with anything else, the people are the core of it. And then when you get into 100% of bureaucracy. Now isn't it funny? We can't make anything work. Like, seriously, like you have a job, I'm not even going to ask you what it is. Right now picture three people you work with that you wish got fired? Yep, they're in your head already. Like, oh, yeah, that one, that one and that one. I could fire a couple of people around here. But there's, it's just it's amazing that everyone agrees what the goal is. And then somehow, we can't get it accomplished. I do think it's got something to do with what we talked about just a couple of moments ago, with the idea of like one parent figuring it out, while the other one kind of lays back. Like there's just too many competing ideas and nobody sees it the way other people see it. You almost need, isn't it funny, you almost need a centralized brain. But then as soon as that happens, one of those people becomes a maniacal like overlord. And then you're like, well, we great. We put this one in charge, and he sold everything. He lives on an island now we have nothing. You can't win people. That's all I'm saying. All right. So you get insulin, but is it in a syringe? Is it in a pre loaded needle? Like how are you doing it?

Debrah 16:07
We're in the UK. We're not in a third world country? No,

Scott Benner 16:10
do they give you a stick and you have to break a hole open and dump it in? How does it work there. So

Debrah 16:16
Jack started on MDI. He started on Neva rapid and never met. And we started an application for a pump that he got a year ago. So he's on the app. So Med, web cam EPS.

Scott Benner 16:29
Okay. And if Samad is is that a tubeless? Pump? No, no, which 1am I thinking of? I'm gonna pull up some so I can say it. Did they suggest the pump for you? Or did you ask them about it? I

Debrah 16:48
would have left the hospital with a pump, if I could. MDI wasn't great for us. Whilst we had pens that would give us half units. They were too big for Jack. So we were just on a roller coaster from day one. So I couldn't have got the pumps, you know, what they did? What they were able to get for us is a Dexcom G six straight away. So we left the hospital with a Dexcom. Okay. Thank God for that. Yeah,

Scott Benner 17:16
I have to say, the people if summit way to not put a picture of any of your products on the main page of your website. Way to really think it through. Okay. Oh, this is the patch pump that like, it's almost works like G six, right, like a bed goes down and then the pump clicks into it? Yes, that's I haven't. Right. Okay. And that's just available there. And you can't get that in America for sure. Is that your only option? Or was that just the one you went with? We

Debrah 17:47
were given a Medtronic option. But I don't think at that stage, it was available on closed loop.

Scott Benner 17:57
Okay. Okay. And you are Wait, if Summit is is a loop system, calm.

Debrah 18:04
APS is the app, which speaks to IP Summit and the G six.

Scott Benner 18:09
Is that a DIY thing? No. Oh, wow. That's cool.

Debrah 18:14
So you'll remember all the press that came out about the artificial pancreas which annoyed most pet parents and carers of kids with type one, and those were type one as well. So it's clearly not an artificial pancreas. But it was what seemed to cause all the press at the time.

Scott Benner 18:33
Yeah, it is interesting, isn't it that terminology? Can you talk about that? Like Did it bother you hearing the words artifact? Tell me why.

Debrah 18:42
I think a third was the launch of the cam APS slash artificial pancreas was it was just before we got the pump. So here we were struggling with MDI, dealing with the roller coaster of highs and lows thinking we're gonna get this pump and it's going to solve everything. And whilst Jack's a once he has improved immeasurably, and actually the pump is great. It's clearly not the same thing as a pancreas. Yeah.

Scott Benner 19:14
I hate this. I hate to say it like this, because words matter. Just makes me feel like I'm, I don't know. I'm on a social media campaign on Instagram. But But I think words do matter. Sometimes. It's that it don't offer me relief. And then have me find out it's partial relief. Just say it's an insulin pump and an algorithm runs it and it'll make some decisions, but you might get high and low. I know. It's marketing, though. Right? Like they need a word. They need a word for it. So but yeah, I take I take your point about that. Also, you're newer into this, like two years is a very short amount of time. Like you're still I assume it's a raw nerve for you. At this point. Yeah. Yeah. Like at that So you understand, in this house, if you turned on three different televisions and three different late night hosts, we're making like horrible jokes about diabetes. And Arden was walking through the room, she wouldn't even notice. She, she's in a different place where I imagine some people get to and some people don't. But I can remember in the beginning, like the thing that made me the angriest was what I call cure season. It's when all the researchers are looking for more money, and they publish their articles about how they cured a mouse of some diabetes that they gave it three days before or something like that. And then anyone who hasn't been around it for a while, it's like, oh, I mean, I had, I swear to you, I sat at a desk, read a thing, got very emotional, ran into my bedroom, told my wife, I said, I can't believe how lucky we got that. Artem was diagnosed with type one diabetes, right before they cured it. Like, look, because these people just cured a mouse. And I really had that feeling. And I was overwhelmed with how like lucky it was, and my wife who actually paid attention in college, like, you know, read the article, and she goes, Oh, Scott, this happens all the time. Like these guys are looking for money to keep their lab going. And so they have this article. And I thought, Oh, how many people see that every day, and thing, and it's so concentrated in like this kind of two month period, where they all push this information out on the internet and like, oh, look what we're doing. What we're doing, it's happening. I interviewed somebody 15 years ago. And as I'm talking to her, she is simultaneously saying the thing she's doing isn't really working. And we're right on the cusp of it. And I was like, Okay. And now today, her thing is in the exact same spot, it was when I talked to her I don't know, seriously, like 10, I don't know, 10 years ago, something like that. She just trying to keep her lab open. And I don't know that she doesn't really believe what she's doing. But you're throwing darts into the universe, you're not like, it's not it's not it's not this such a specific thing the way you want to believe it when you're reading it. So like, oh, they found the thing, they're going to fix it like that kind of idea. And then I stop and think I don't even as humans, what have we even cured. I mean, almost nothing. We like have inoculated people for things and eradicated stuff. But I mean, nobody's taken a pill and been like, Oh, my God, my cancer is gone. Like, it's just, it's amazing, like in the movies. And I think that's what people are hoping for. Anyway, sorry about that. I don't know where that came from. I was explaining to somebody yesterday that if you want to make a podcast, you have to have the ability to shut off a portion of your brain and continue to talk. What portion is that as like? It's the portion who has an expectation that the person you're speaking with will get a chance. Okay, so how does jack handle it? I mean, he's three, is it? Is it like resilience resolved? Does he fight against it?

Debrah 23:18
So at the time of diagnosis, I don't think he really had a sense of what was going on. He was and still is glued to his iPad. So when we were in the hospital, he was just sat with his headphones on all the photos I have of him at that time is just him in his pajamas, watching his iPad smiling. I remember the first injection, he cried. And then the second one, he was fine. I do think when they're diagnosed young that there is the relief that they will have no memory of the diagnosis. The thing that worries me is how many more years he's living his life as a type one.

Scott Benner 24:03
Yeah. Tough. Have you heard me say that? I asked in the hospital. I was like, you know, what are the long term implications of this? And the person said, Don't worry, like you don't see, like bad side effects from diabetes for like 30 years. And I thought, but she's, she's little like, What do you mean, like 30 years from now? She'll be 34. Like, is what are you saying? You know, and then it's not long. I mean, Arden's had diabetes, what she was like, isn't that weird? I don't really know the dates. So she was diagnosed in 2006. Yeah, just got her age wrong. She was diagnosed in 2006. She was born in 2004. So Arden was diagnosed when she was two. And back then, and I still hear people getting this advice. Now. They would tell us with no trouble they didn't blink. High blood sugars are not a problem, because they're young. And I was like, what They're like, yeah, for like long term problems. They're young, it won't matter. I was like, the other lady said in 30 years, you guys are gonna pop out of her ears and her legs are gonna fall off like, like, Wait, which, which one? Is it? You know, she's young. And then I started thinking, like, the body can just regenerate from like, massive. Like, no, that's not right. Like, you know, but, but a person said it to you like a lady in a room and she has a clipboard, and somebody hired her, and she works at hospital and, and she's telling me, Don't worry about it. And the next person is telling me, you really should worry about it. But there's nothing we can do. So just go for it. Like, I'm like what is happening. And you would just think that's old timey. But I still literally hear people say it now. Like they told me don't worry about the high blood sugars because they're young. Like, I don't know what, I don't know what that

Debrah 25:50
means. And if I remember back to those days, those hazy days in the hospital, when Jack went to sleep, I went and found the podcast. And in those early days, when you're dealing with all sorts of blood, sugar's highs and lows, and you're there telling me that it's possible to get numbers in range, I must have killed you in my head many, many times. But I cannot tell you how thankful I am for retaining that message. Because I just had you not told me it was possible. I don't think I would have worked as hard as I did to keep Jack's numbers in range, because I just like you say, the education you get at the beginning, is extremely basic, just to kind of keep the child alive. So when Jack was on MCI, the nurses would say, you know, don't correct until he's to 60. So he'd have to get to 14 plus to be corrected. And you're there thinking, Okay, this is normal. He'll have high blood sugars, they're better than low blood sugars. And thank goodness, I found the podcast and was able to kind of see through all of that. And when when he went on to a pub that changed everything for us.

Scott Benner 27:13
You're not supposed to say nice stuff, when I'm looking at you. When there's no camera on, I can just like play it off and say something. But now you see me I'm looking at you. I'm so sorry. It hit me as crazy as it is. Because I hear you with your accent. And the last three reviews that have come in for the podcast this week are from Ireland, Great Britain and Bahrain. Those are the last three reviews that the podcast has gotten. None of them have said You're horrible person that I've killed you in my mind. So that's excellent. I don't know. Like, it's crazy to think like you're looking at me now. I'm in a room in my house. You know, it's not like I'm not at some podcast studio or something like that. And to know that it reached you, like my brains, like, how did you even find it? Like because I'm old? Like, I really am like, it's like, wow, you have an accent, you found my podcast. That's amazing how that happened. And then people point out how the internet works. And I'm usually more understanding, but like to know that the message is not just reaching far, but that it's needed in all those places. Like, I mean, really? There's a review here from Bahrain, like, what the hell? You mean? Like, that's insane? I'm in New Jersey? And how is it possible that this information isn't just freely handed out by people, like in hospitals, where you would expect it to be? Like, why are you like to 60 my god, like, I get what they're saying, they don't want you to make him while he's little, they're afraid you're not going to be able to react quickly enough. But at the very least, save it for now, until you understand how you're doing it better or until we're worried about a honeymoon ending or whatever. Like, their real concern was like, Why not tell you that this is going to shift as time goes on, instead of this idea of like, this is like, am I the only one that knows how to communicate with people? That's not possible, right? Like other people must know how to do it, too. You don't understand that in a pressure situation. When you say something. It's now law. Like, that's it people's minds like me, the example I always use is that I swear to you, I thought Novo LOGG was insulin. For years, I didn't know there were other insulins. I was like, No, this is insulin because the lady handed it to me and said, This is the insulin and I went Yes. Okay, I wasn't making notes on a piece of paper, but I was writing them in my head. And by the way, when you drink out of a mug that you bought off my website that freaks me out, okay? But that really is just, it's such a simple thing. It's why I'll share with you because nobody will hear this for a little while. And I don't like to give away my secrets. Because I know they're listening never and they're copying. Jet, this really will be to be, honestly will be between you, me and Jenny. So Jenny and I are going to make a grand rounds series, like aimed at doctors to tell them these types of things. So we're hoping that that helps somebody because it just it's not right. I know, it almost seems to like trite to be concerned with. But what you needed to hear was, for now, we're not going to correct until this number, because of these reasons. And as you get better at this, and as he grows, and as this progresses, we are going to change those, those numbers. And here and here's why. Like for now, we're not going to worry, because it's only going to be for a couple of weeks or a couple of months. But he's not going to feel good at that blood sugar, it's going to alter his thinking, it's going to cause health issues. Like, I just think that if I'm going to die, and you know, I'm gonna die if I don't do a thing, but it's very unlikely that I can do that thing. I still deserve to know. That's all I deserve to know still. And I've just I've spoken to too many people who have been diagnosed in their 30s like your son, like my daughter. And then 20 years later, I'm talking to them on a podcast, and they are blown away by the things they're learning. And it's, it's life altering. Like, it's just, you know, you've been living with a ticking time bomb, and you and somebody has been telling you what's a teddy bear? And then one day you find out it's not and it's hard to deal with. And

Debrah 31:46
you know that you can't necessarily tell the family all of this. In that first meeting, it comes it comes in waves, and it was actually where you talk about, okay, say your range is four to 10. Sorry, I don't know the the universal numbers. If they say you're starting from 70 to 180. And slowly you chip away at that number and suddenly your high number becomes your the number you'll accept is 170. And then it's 160. And that's really what we adopted as a family is we didn't try to get the numbers to be perfect from day one. We just chipped away, week after week. Yeah.

Scott Benner 32:31
Isn't that just common sense. Like I know your football is around in mind is oblong. But when a when a quarterback comes into the league, you don't start with them throwing the ball 80 yards down the field to go look, throw one, five yards, see how that goes. If you can do that, we'll add some 10 and 15 yard passes. And then we're going to keep growing as you grow and, and tell them that that's what's happening. Like I'm not saying on day one be like, listen, the sugar is scrubbing you from the inside, you're going to have a stroke when you're 50. Like I'm not saying do that I'm saying they should know what the implications are. And they should understand that it's not emergent like it's not, it's not today that they have to understand it. But over the next six months, we are going to take you from here to here. And then once your understanding rises to that we're going to adjust the parameters, and we're going to go again. But that would take here I'm going to be cynical, that would take planning and a level of professionalism that just doesn't seem to exist in the world, you know, because there's no, because aftercare is terrible, because no matter I mean, I don't know how it is there. But I just spoke to a person the other day, had pre diabetes type two, their doctor gave them ozempic. And it was working. And then it was time for the prescription to come back up again. And the insurance company said oh, you can't have it. We gave it to you by mistake. This person had a five, six a one C, but you need to have a 5.7 a one C to be considered pre diabetic. So the medication that was going to lower her a one C probably help her lose weight, be more healthy, maybe get out of this pre diabetes situation altogether. They said you can't have that until you're more diabetic. So once your number goes up and you get sicker, we'll give you the medication to bring it backwards, but we won't do it preemptively. Even though you're literally at the door knocking and I don't know that just seems like that's how everything. That's how we think about everything. It feels like around health care. And I know that's not up. It's not something that people don't know. But it impacts things like what we're talking about because know the person sitting with you in the emergency room is not the person you're going to see next time. And so now this person has given you emergent care, which is great, but nobody tells you. This is just emergent care. I don't Yeah, it's very upsetting because it doesn't seem difficult to fix to me. That's it to you.

Debrah 35:06
I mean, we have, you have 10 times more knowledge than I do. But I do think living and breathing it every day, it's very easy to look back and say, it should have been like this. And it's why actually, I've, I've taken on a role as a parent rep for the hospital, to join quarterly meetings to share my my thoughts, because the consultants, the diabetic nurses, they've got heaps of knowledge, but until you've lived it, you might as well know nothing. 100%.

Scott Benner 35:39
That's amazing. How did they approach you? Or is that something you found out about?

Debrah 35:45
So it was a mixture, really. So we took part in monthly therapy sessions that was arranged through the hospital when we when Jack was first diagnosed. And I think as I came to the end of that journey, and reached the place of acceptance, you know, I really felt like I wanted to give back to the families who would be at the beginning of that journey. So we had we had a meeting, I think it was about a week ago. And I can't remember what the topic was, we were talking about finger pricking. And again, they brought something that in theory made sense, but in practice was completely different. And it was only when I described our own experiences, they realized, actually, there's something to be said there. Yeah.

Scott Benner 36:28
Well, so I think that one of the things that needs to happen, and I've done it with the podcast, and it's not easy to do, is you have to say, the people I'm trying to help, don't know what they need. And so you need a person who understands what you need to just lead with conviction, that that really is it sometimes, you know, like, I'm not saying I'm perfect. I'm not saying that if you I'm not saying that the people who listen to exactly what I do, I don't think they do. I think I say everything out loud, and people cherry pick from it, they like, well, this will work in my life, I can make this work, and they do that thing. But you have to be willing to stand up and say, this is the thing we should be doing right now. It's leadership by great, you have to be able to say that because the people who are looking for leadership, if they knew what it was, they would need you. So you're in this bizarre situation, where the the physicians, like you said, have all all the knowledge, and none of the idea of where to take it. Application. Yeah, it's it's a beautiful blend. But but in the end, if I'm going to be honest, when you're in those meetings, you got to at some point, stop talking, and just do it. Like because though, you'll philosophize away a decade of oh, well, some people say this. And some people say that, and this makes people upset and we don't like, at some point, you just have to say this is the direction, hopefully, we'll bring as long along as many people as possible. So everyone's not going to make it. But by us standing here in action, nobody makes it. And it's just it's I don't know, it's how I think about it. But it's not how it's harder here. Because that's not how business works. But you you're probably not as controlled by that, as we probably are. A example I would use is that, if you like I get a different look at the diabetes space, because I know the other side of it, like some of the faces that people think of as like, oh, that person has been around it forever. Bah, bah, bah, like, I remember back when that person was sitting in a car with me going, I just got to get a job with one of these diabetes companies, I need money. And I'm like, okay, like trying to turn a blog into a thing, you know, into a living or something like that. Not to say that that person I'm thinking of is not a good person. They're not doing good work somewhere. I'm not just the lovely person who's sitting in this room waiting to help you like I have to pay for the things that you see around me like this is a business too. I'm just lucky enough that my wife made a good enough living that I wasn't in a fever dream, trying to like, make it work. And I And trust me, a lot of the people. I only know America, well, I know a couple from England. So it's not the point. A lot of the people who were in that position, were in a panic to make a living. And yes, they wanted to make it helping people with diabetes, and they're very well meant meant people. Like I've never met somebody who I've thought, honestly, I don't know any, like bad actors. Do you know what I mean? But it's still their focus is I need a job. And the companies that you deal with, sometimes their focus is like we need clicks. We need people to buy these things like I understand that, but they also have like a real philanthropic side. If when you really get to know them. You need to marry those things together. And that's difficult, because like stuff we talked, I don't know how our conversation took this turn. I don't know how I wake up in different moods ever. but you're like, I thought I was gonna have a fun conversation with the guy from the podcast. And he's like, we can fix the world if we tried hard enough. Anyway, that's lovely that you're doing that. How long have you been doing that?

Debrah 40:10
Oh, not long. A couple of months.

Scott Benner 40:12
Okay. All right. So do you have a plan? Or do you just go in there and, like, dump out your thoughts when they ask.

Debrah 40:19
So I don't have a plan. But we had Jack's quarterly hospital clinic appointment this week. And the nurse who was in the meeting was there and said, you know, next time, make sure you're bringing some of these topics to the meeting. So we've got an issue at the moment where we want to switch Jack's G six to a Libra three. So you'll remember with Aden, the Dexcom is massive PAJAK. And he wears on his arm, and he ends up just knocking it off, whereas the Libra three is a teeny, tiny coin shape. And there's an issue at the moment where the NHS haven't secured funding for the Libra. So we have to wait and lots of waiting around. And so part of what I can bring to the meeting is a human face to that and the impact of having a sensor that's not fit for purpose

Scott Benner 41:17
is the g7 not coming to England anytime soon.

Debrah 41:20
The g7 has come out. And we've also just seen that you can get the Omnipod five and g7 combined. However, Jack's ipso med cam APS setup only responds to the G six and the Libra three.

Scott Benner 41:38
Gotcha. Okay. Yeah, I you've heard about Omnipod. Five G seven already. Yeah. Really? I didn't know about

Debrah 41:46
families who are starting on it this week at our hospital

Scott Benner 41:51
not loop not like Do It Yourself loop on the pod dash with G seven. Because? Because G seven and Omnipod. Five aren't even announced here yet. And I don't expect it. I don't want to come off like I know something because I don't. But I don't expect it for maybe till towards the end of this year. Because he slim and g7 is closer. I think tandem has said they expect quarter three, maybe. But on the pod has not made a public statement about it yet. As of this is quite there. Yeah, as of this recording in July, so. But there is a way to use, like Do It Yourself loop with G seven and Ami pod dash, which is what our nine. That's what Arden is doing right now. So

Debrah 42:43
have you ever done closely with Arden?

Scott Benner 42:46
Yeah, she's using it.

Debrah 42:47
I thought she's on DIY?

Scott Benner 42:49
Well, it is I mean, it's a closed loop system.

Debrah 42:53
Right. So she doesn't she doesn't use one. That's because I don't know much about DIY, because it was never an option for us. But we went straight to an app that kind of did it all for us. We didn't have to build it ourselves. Yeah.

Scott Benner 43:06
So what do you mean, when you say closed loop? What is it you're like? What are you saying? Like?

Debrah 43:11
So is what DIY system is ordered on?

Scott Benner 43:15
She's using the loop three.

Debrah 43:16
Okay, yeah, I don't think those options are available here

Scott Benner 43:21
where you can download it, you just would need an omni pod dash that G says. So it's completely do it yourself. Like it's the codes on the internet. Like it's not from a company. So to say that it works with Omni pod dash is 100% true, but it's not like Omni pod, made it work with AMI like people online did it? So Right. Yeah. So. But yeah, she's been using loop three for like, six months, maybe longer. And prior to that she was using loop Dev, they're just different versions of the algorithm that lovely people online make. But yeah, it's keeping her loop three boluses. When you try to go high, takes away basil adds basil. You know, like that whole thing. Pretty great, honestly. So

Debrah 44:11
the difference then between what she has versus what Jack has is, Jack has closed loop, but it's all built into an app already. We don't have to build anything from the

Scott Benner 44:22
company. Yeah. Like if Samad is providing that for you. Exactly. Exactly. Now on the pod five is an algorithm based system that is provided by Omni pod. So they made it I don't know if I'm gonna hold something up for you. I don't know if the cameras gonna grab it or not. Yeah, that's our 24 hour line. So the bottom is 70 and the top is 120. So she's been over 120. Twice, maybe in the last 24 hours. But she's been super stable. Geez Jack now. Can you say that again? Yeah. Oh, no,

Debrah 45:00
he's just eaten. That's there's 9.1. Nice.

Scott Benner 45:04
Look at that. Isn't it amazing? The technology is just is moved this to a completely different level. I, you know, I did an interview yesterday with Jake from Omnipod are from Dexcom excuse me, and we're talking about Dexcom g7. And at the end of the interview, I just said, Hey, can I ask a question? They said, Sure. I said, at what point? Do you think you can scale this large enough that the price can come down for everybody? Like, I think I actually said like, this is great, this conversation is lovely. But there's going to be a lot of middle class moms and dads and adults listening to this, who can afford it and have insurance and etc. And I'm like, how many of these do you need to sell so that you can go to the business model? Because there's two business models, right? Like you see it all the time, sell a very expensive thing to a few people, or sell a very affordable thing to a lot of people. And I'm like, when can we get to that, like so that it's not just I wanted so badly to say white ladies. But instead I said, you know, middle class people, like when are we going to get it to everybody? And he actually gave a thoughtful answer about how that happens. And how they're trying to get into type two space and how that, you know, ramping that up will help support the rest of anyway, it's interesting to hear his answer. But it really is the truth is that, you know, and then once you make it accessible, it's on phones. So I have, I'm telling you all kinds of stuff. Nobody knows that, but I'm giving I'm giving a talk on World diabetes Day in November at a for a big Children's Hospital on the East Coast. Right. And they offered me an honorarium. They were like, you know, we can give you, I'll just say, we'll give you $500 To talk at our thing. And it's just on Zoom. Like, I don't even have to go anywhere. And I said, I don't want your $500 Like, let's, what can we do with it, that would be valuable. And the doctor said, Well, I could use it to buy a phone for a kid who has a CGM, but can't afford a phone. I was like, can't do that. Like, please don't give it to me, like do that instead. But that was the first thing he thought of, like, top of his head right away. We could buy a cell phone for a kid who needs a CGM, because the not having a cell phone is stopping the kid from using a CGM. I was like, right on do that, you know, please. But anyway, like that. So it's skipped. The scalability is an issue. Meanwhile, while I'm looking at my questions for Jake, and I'm talking to him three different countries, when is it going to come to hear when is it going to come here? When is it going to come here? And like you can see it on his face? Like we're trying? Like, it's not like a thing where they're like, yeah, we'll get to it. It's they're working on it. It's just, it's not easy for some reason. So anyway, God, alright, so you are advocating on your own. You are trying to help move the system along. That's terrific. You have good ear for your son. He's doing well. Your husband came on board. He understood. Yeah. Good. Excellent. And your husband is Paddington Bear in my head. You know that right? I don't know why. I'm so sorry. Those were not bad movies, by the way.

Debrah 48:27
When he comes down the stairs in the bar,

Scott Benner 48:29
yeah. It wasn't bad. Like for for a movie about a teddy bear was talking. It had gravitas. All right. What else? Do you worry about? Harry? Have you had them tested?

Debrah 48:45
We actually asked a clinic about the Elsa study. Here's what's interesting. They said to us, first of all, was you know, I think this the siblings, there's a 2% chance the sibling might be diagnosed with type one, that they said that younger siblings are even more likely than older siblings.

Scott Benner 49:09
Why is that? No idea. Just time.

Debrah 49:14
I couldn't even tell you why that might be even with an educated guess. And so what we said my husband and I was we might have a conversation with Harry and bring him on that journey if it's something he wants to do. Because I think the benefits of the study or if there's anything that being picked up, it's picked up early, but I think as parents with kids with type one, the moment the sibling is drinking more is going to the toilet more wets the bed. You are there with a finger picker, understanding what's going on.

Scott Benner 49:50
I think that's the biggest consideration. Yes, right like that. That you won't see it. It'll turn a dk but I'll also say A that I've had. I had prevention bio on the on the on the podcast a couple of times over the last two years. And they were making at that time a drug that well it was in testing was called to Ms. aplomb. But as it went to market, it's called tz old now. So tz old is a drug that aims to slow down the actual onset. And it was bought by a big pharmaceutical company a few months ago. So Sanofi owns it now. So they sent off he just bought prevention bio, they paid a and I'm going to look it up, because I kind of think what they paid for it is a little bit of an indication to me about how much they believe in it. This just happened in April 2023. I'm not going to find it. And I don't want to just guess it out loud. But I think it was like $3 billion. So hold on a second. I'm going to check now that I said out loud, I have to find it. Yeah, I was right. Snuffy agreed to acquire prevention bio at a cost of $25 per share in a deal valued at $2.9 billion. So they must have really wanted it. My thought, I don't know, obviously, I don't know a lot about anything. But I think that you're going to hear a lot from them in the future, about the need for early detection, testing being ahead of it, because these kinds of things may be could be really valuable. I mean, at the moment, they're not going to say that it'll hold off type one forever, because that's not what they put through the FDA. But I've had two different conversations with them. Where you, you can hear I feel that that's the the hope and desire moving forward is that maybe you could get ahead of it and put a stop to it. Not that's what it's doing right now.

Debrah 52:04
We have friends whose son is on the trial here.

Scott Benner 52:07
Really? Is it is a he has I think he has

Debrah 52:11
levemir and occasional corrections, but it's otherwise without insulin.

Scott Benner 52:20
It's a big deal. Really. It is he mean once you have diabetes, it's hard to like say like, Oh, it doesn't matter how much insulin like I'm just doing the thing but I do think it's a big deal to slow it down to just need a basil. It's the kind of almost a turn the management into more of like, it almost feels like type two management, right? Yeah, like a little background insulin and not as and so it takes away what meal insulin corrections, low blood sugars that come from overcorrecting, like that kind of stuff. That's, I think that's pretty amazing. So I don't know where it's gonna go. And I'm getting pretty old, so I might not see the end of it, but I'll let you know. Yeah. Will you come find me in the afterlife? Won't you be in British afterlife? Yeah, so you won't be able to find me.

Debrah 53:06
We have family in New Jersey Bay. Do you really? Yeah, Englewood.

Scott Benner 53:11
Oh, did they move from there to here? Yeah. Okay, I

Debrah 53:15
hid from here today.

Scott Benner 53:16
Did they hate it? Do they not like it? I love it. I love New Jersey, New Jersey gets a bad rap. And it shouldn't. By the way, it's a lovely place.

Debrah 53:24
Very happy, though.

Scott Benner 53:25
Good. I'm glad. What have we not talked about that you wanted to talk about? You have a list, don't you?

Debrah 53:34
I have no. I think one of the reasons I reached out to you was because I mean, my mum always says there's a book in me to write about my first the first year of Jack's type one. And so I wrote to you and said wouldn't it be great to talk about all the things I wish I'd known. You know, during those, those first, those first few months, and I think you know, one of the things that I would love all families to know if they had the the ability to do so would be when you're first hit with this bombshell, just take a month off work, close the doors, bury down the hatchet and just get your head around it. I think whilst the doctors and consultants will tell you that there's a lot to get your head around and it's going to change your life. You don't really take that on board because you're thinking yeah, I've heard about type one. I've seen the kid at school that had a Mars bar. They had a few injections, and it's going to be fine. I think if I could go back to that time, I wish someone would have told me just take the time you need to get your head around it.

Scott Benner 54:47
Yeah. What do you think you lost by not doing that?

Debrah 54:50
It took me longer to accept what was happening.

Scott Benner 54:54
Because in the moment you're just busy dealing with it. Yeah, yeah,

Debrah 54:59
we made some Many mistakes as I'm sure you would anyway, if you were juggling all the things, but I think I just needed and wish I'd had that time.

Scott Benner 55:09
Yeah, I tried to remember to say that. For years, I was very, very bad at taking care of diabetes. I think it's important for you to know, like, as you're listening to this, like, because I could do it in my sleep now. Like, just no lie, like I swear to, you could send five kids over here with diabetes and three adults. I think we could talk for an hour, I could get everybody set up and they'd all just go living their their lives. But back then, I was terrible at it. I was terrible at it. I was panicked about it. I was nervous about it. I was 100% Sure, I was killing Arden. Every time I did something, every time I did something, I was like, this is gonna kill her. Like, I know, I'm I know, I'm messing this up. I saw her a one sees I was powerless to move them. It was just terrible, like, really bad. And I'm telling you this, because then I'm going to tell you the rest of it as I was a stay at home dad while I was doing that. So it didn't help me at all. But I do think that just not rushing and taking away. The other things that have to happen in life all the time, like so that you can kind of focus and end so that you can stop focusing at points too. I do see the value in that. 1,000,000% Are you in a better place now?

Debrah 56:31
So much better?

Scott Benner 56:32
Do you think that place continues to get better as time passes?

Debrah 56:36
Yeah, yeah. And as you say, it doesn't get easier. You just get better at it. And yeah, I think even the other weekend, we were with family and Jack had been on the bouncy castle and ripped his CGM off and there we were in the corner, just changing it as if it was just any old thing. I think that had happened a year ago, I would have gone into a spin. I wouldn't have I wouldn't have coped with the two hour warm up all of those things. Whereas now, whilst I I still I think there's still a way to go, I'm definitely much more accepting and much more confident with managing it.

Scott Benner 57:20
How about your personality? Like, are you nervous to begin with? Are you calm to begin with? Like, is there a state of like, what's your stasis? Like? I guess?

Debrah 57:31
I am a control freak. So diabetes and control weakness don't go very well together. So yeah, I think that's again, why learning the things is right is really important to me. Well,

Scott Benner 57:48
listen, the bookshelf behind you looks perfect. So it's doing that for you at the very least. Well, yeah, but you know, isn't that sort of like anxiety? Like, right? Like, people are like, Oh, I experienced anxiety, but anxiety really helps you like too much if it's debilitating, but the right amount of it is pretty necessary. And you will see a lot of successful people have a little bit of that like perfectionism, anxiousness to get something correct stuff like that. If you don't drown in it, then that nature is probably valuable. Right? Are you not? Is it drowning you though? Managing Jack? Yeah, like the end the nature of it, like feeling like it has to be perfect in that you're in control of the whole thing, etc.

Debrah 58:35
Less so now. Okay, let's say Now also, because we have better control. His time ranges, you know, in the 80s, whereas in the early days, it was in the 40s, or 50s. So the fact that if there's a blip, knowing that that's the exception rather than the rule, I can, you know, I can accept that I can deal with that knowing that you know, okay, he's going high, I put something in, I'll deal with a low later I can, that narrative. When you've told yourself that time and time again, you can cope with it better. Yeah,

Scott Benner 59:06
it really is. It's, it's the experience. I might sound like a broken record, but you have to just keep having those experiences over and over. Just a really simple thing was, we all went out the other day, and we were going to be gone for a couple of hours. We weren't going to go too far from the house. But Arden was not going to bring supplies with her. And I just did. Like I grabbed a little bag. I threw two Omni pods in it, and some insulin, and I put the insulin on some ice and because it's hot out, because I don't know what's happening to the planet, but it's very hot here. Probably that global warming thing. But I brought along and we got home. We never needed it. And I disassembled it I opened the bag. It's like the pods back in the drawer and I put the insulin back in the refrigerator. I think the whole process took 45 seconds on either side of it. But I will tell you that I never thought about it. I just did it. But years ago, if we were going out years ago, I would have known I have to bring this stuff with me. And it would have felt like I don't want to say a burden, it would have felt unfair. It's that, like, I can't believe that, that she has to do this, like not that I have to do it for it. But this is her situation, and that it seems so wrong. And it's upsetting and almost makes you sad, and ruins the day before it even begins and blah, blah. And now, I didn't have one of those thoughts. And the truth is, is that back then, that wasn't true. It's just how I felt. It really does. It's like everything else, like repetition gets better use, you know, I know, I'm the one that said, you know, it doesn't get easier, you get better at it. But I mean, that doesn't just go for diabetes, here marriage, it doesn't get easier, you just get better at it. painting a house, it doesn't get easier, you just get better at it. Like like everything is that, you know, it's not just diabetes, it's living, like you get better at being alive along, you're alive. As long as you don't spend too much time beating yourself up about it and staying mired down in, in things that you could get past if you just allowed yourself to keep moving forward. I don't

Debrah 1:01:19
know. And you realize also that diabetes is our world. It's, it's it consumes us at times, but there's things that are consuming all families and all people, this is just our thing.

Scott Benner 1:01:33
Gotta be something. No one is out there living some pristine situation that you know, just gold toilet bowls, and nothing smells weird. And there's never hair on the floor. Just everybody's everybody's living the same life, you don't just see some people's and honestly, health. I mean, when your thing is health, I don't know, I could probably make the same argument about money. Right? If you were, if you were in a dire situation about money, I'm sure you could make the same exact comparisons that you can make about having diabetes. And then to me then, and then I try to imagine the people who don't have the money and have the diabetes, you know, and their situation is obviously worse. The minus and, and all the things that come from also, health is, is the most important thing. Like it sounds obvious when you say it out loud. But when you're living day to day, you don't think of it that way. It's obvious that we don't think about it that way. Because of the things that people eat, that they know make them feel sick, but they eat it anyway. Or the things that people do that they know aren't good for them like, like, just because something's obvious doesn't mean you can make it happen. But at its core, it's very center, a oh, just probably say something that's been set for, you know, millions of years, I would imagine it's one way or another. Like if you don't have your health, your you know of anything. So when you're hit with this diabetes thing, it's imperative to figure it out. It just, it just is. And if you have to take time to do it, or listen to a podcast to do it, or call your doctor 8000 times so they answer your question correctly. There's nothing more important until you get it moving in the right direction. I think. I think that's what I mean. Anyway. All right. What's on your list is on that list. Deborah? Well,

Debrah 1:03:27
I had a question for you about about Aden. Which is or maybe maybe some advice you can give families like us who want to make sure that Jack's always got a good relationship with his diabetes. We're going through a phase at the moment where he's saying I don't want diabetes anymore. Why did the doctor give me diabetes? And we're, you know, we're saying to him as as we've been advised him that it's okay to hate diabetes. You know, this is this isn't trying to fudge something that's not true. It's true that diabetes sucks.

Scott Benner 1:04:05
How old were you when he said the doctor gave it to him and not you? Was that lady I swear to you? Yeah. I actually one time, in a doctor's office, I joked around with Arden. But the nurse came at her for something. And I was like, I can't believe she's doing this. I looked at the lady I was like, I'm just gonna put this on you if you don't mind. By the way, I learned very early on that the pediatrician when something has to happen to a kid that's unpleasant. The nurse does it instead of the pediatrician so that the kid doesn't associate the pediatrician with a bad moment. Which I was like, that's interesting. But anyway, that's not what you're talking about. Sorry. I went on a flight of fancy there for a second. I just remember that. My friend Adam, going like, I'll be back. The nurses gonna do this. And I was like, Where are you gonna go? As I don't want to get to see me while this is happening, I was like, Alright, I don't know that it's a question that you answer with a sentence. I think that it's a mindset and resilience to stick to the mindset. It's the ability to not martyr yourself, not to martyr your kid the situation, you have to not to have to want to not be upset by it. Meaning you can give yourself over into that kind of drama. And start woe is me and yourself. And before you know it, you're Scarlett O'Hara and you know, you're getting the vapors and stuff like that. It's messaging. It's repetition. Right? So I think we've always told RT and what diabetes is, we've explained it to her as an autoimmune issue. As a 19 year old, if she has other issues that seem like they're auto immune related. You know, she'll say things like, you know, she's like, Oh, my bad luck that I have this, or blah, blah, blah, but I've never heard her blame herself. I've never heard her blame another person. She's not thrilled about it. You know what I mean? But she also doesn't bemoan it. And I don't know that that's the thing. I taught her as much in words as I did, with example, I guess, I guess it really is like a lead by example situation. And that's tough, because you have to keep up your enthusiasm. You have to quell your anger and your despair. And I am just generally speaking, one of those people who wakes up every morning, hopeful, like, I swear to you, like if a volcano erupted in New Jersey, and I woke up the next day, I'd be like, Oh, my God, I lifted the volcano thing. This is great. We'll start over again. And I have a little bit of Groundhog Day in me, I guess, you know. But I also grew up in a situation where my dad was, you know, angry, and there's a lot of yelling, and things like that. And you can't just let it pile up on top of you. So I kind of think I see diabetes is the same thing. Like if you let diabetes pile up on top of you, it certainly will. You know, so you got to wake up every day, like it's not there. And I've had some moments, man, where I've been up all night, some nights, and then my alarm has still gone off in the morning. Like it didn't know what happened overnight. Like, like, it's no one on my side. I went to bed. I have gotten out of bed going, Oh, I'm okay. Everything's fine. I've been asleep for three hours. You know, like, like searing pain through your brain and you can't make sense of anything. And you're like, I'll probably die. Just stay alive for eight hours at Morehouse. What Siri? What the hell? I didn't say Siri. I said searing pain, Jesus. You're like, you're out of bed. You're like, I just have to stay awake for 18 hours. And then I can go to sleep. And but what if a butcher gets low again tonight? I feel like that can't happen. I'll die. And then you don't die. And you're like, ah, it. But every morning like it's I never. I never went into a room and said, You know, I'm tired because your blood sugar kept me up all night. I never said it's, I've never once said, Oh, okay, well, hold on, we have to change our pump before we leave. So everybody hold like, it's never like that. It's always just matter of fact, it's like, this is the job, we do the job. That's it. And we don't do it. Like when we do that job. Like we're being paid very well for it. And that we're excited to do the job like this is. And I think that's because I don't see. T It's funny. You said it's okay to hate diabetes. And I don't know that I'm okay with that. Exactly. Like, because while Arden isn't diabetes, she does have it. She doesn't have any way to get rid of it. It does seem linked to her. Whether you want to think psychologically, it's not linked to her, but it is linked to her. Right. And so I don't know. I mean, I don't know if I think you could wish you don't have diabetes. I think that you can hope that this gets easier. But I mean, I don't know. Like I just think of The Walking Dead and like you're on a planet now with zombies. So act accordingly. You know, they mean, no more strolls in the park. Tell you that much. Like so. So just this is your new situation. Make this like I don't want to say normal. I mean, I'm sure that's how some people think of it. But this is this is this is where we are. Like, I've been in so many different situations in my life. You know what I mean? Like I've been broke. I've had two parents. I've had one parent. I've had times where I didn't feel like I had apparent there were times where I felt like I was someone's parent before I was. There were times we had no money, little bit of money. You know, I think you can be happy in all those situations. I don't know that this is any different than that. Was any of that helpful? Very Oh, okay. I can't tell because like I told you earlier, I partially go away in my head when I started talking. Yeah, I just I don't know, I don't think. I don't think that it feels like, people try to take their round peg and fit it in the square hole. Like, I want diabetes to be the way I expected my life to be before diabetes. And I don't think that's reasonable. You know what I mean, but I don't think that it means that it's bad. It's just different than you expected. And why did you expect what you expected anyway? Was that a Disney movie that made you think that's what was gonna happen? Right? Was it Harry and his little brother, and those the Kings, the Queens they made you think like, it was all going to be exciting? Or, you know, like, I don't know, like, the same thing pops into my head over and over again, it's a country music song that I think my dad used to listen to when the 70s than the lyric was something like, I beg your pardon. I never promised you a rose garden. I don't know what that is. But like that, that is? I think about that a lot when stuff goes wrong. Like why did I expect that this was going to be this way? And why do I have the right to be disappointed that it's not? Like just this is this is what it is, I can't get out of this. Let's be happy here.

Debrah 1:11:35
You have a choice that you have whether to let what to manage diabetes, or let diabetes manage you? Yes,

Scott Benner 1:11:42
unless you have a mental illness, you have a choice. And I'm being I'm being 100% serious about that. Like, unless there's something in your brain that is stopping you from having what I would consider to be reasonable human reactions to things. If that's your situation, that's a different conversation. But for the rest of us, you decide, it's up to you. I use this phrase all the time, when I'm talking about other people in our lives, and my wife and I are talking about them privately. And don't judge me, you all do it. And I don't think my wife understood it until recently, I explained it to her like a different way, I realized she wasn't taking me at my intention. But I think some people want to be upset, right? I don't think that they consciously want to be upset. I think that it's there in their nature, to be at odds with something. And I've used a number of different ways to explain it throughout time. But like, I'll tell you this, if you're married, and you don't know that this is true, you're not paying attention. But when you have a common enemy, you get along better. Right? When you're mad, when you're mad at the school, when you and your husband are like, yeah, they're screwing the kid, you have never been in more harmony than when you have a common enemy. Right? I try to always have a common enemy with my wife. So I'll even like, you know, like, if someone's like, she gets off a call, I'm like, That lady was nasty. What do I care if she was nasty? Doesn't matter to me. It's not my job. It doesn't matter. But I'm like, I can't believe she spoke to you that way. And then my wife's like, yeah, she was and I'm like, right? Not me, though. I'm on your side, honey. Life is hard. I mean, it's hard. And it's repetitious. And it doesn't really pay you back. Except in the moment. I think what I've learned, I don't want to bum you out. But my mom died a couple of weeks ago. I got to watch her in our last two years fight with cancer and a number of different health issues. And when it was down to the last couple of days, and my brothers and I were together, and we were trying to make sense of it. And you're still like in that, like fix it mindset. Like if we do this, then maybe this will get better. And maybe she'll get to hear like that kind of stuff. I said to my brother, I was like, we're out of carrots and sticks. And he was like, what? And I said, I think life is carrots and sticks. I said I think it's goals, and you get into the goals. And I'm like mom's our goals. Like that's it like she's done. She it's over her body gave up. There's nothing we can put in front of her that will entice her. And even if we could, she's still going to have cancer when she gets there and it's going to kill her. So mom's out of carrots and sticks. And that's it like we need this is good, like not good. But this is right. You know what I mean? And then I kind of took that thought and I've been thinking about life that way. And I don't mean that life is empty and you're just chasing something. I mean that life is today. Like your life is not what happened yesterday and it is not what might happen tomorrow. It is literally today and to tomorrow, it'll be today again. And it won't be today. You know, it won't be yesterday and it won't be tomorrow like this is it? Like, there's a million ways to say it, I might get hit by a bus tomorrow. I don't know what the future brings, etc. But this is it like today, you will have talked to a guy on a podcast, you will have helped your children, you have made food, I'm assuming you'll straighten those books up one more time. So your brains happy. Things like that. And this is it. If you died tomorrow, This Was Your Life. And so I don't know, like in that rambling is how I talked to art in about diabetes, like somewhere in there is that answer, which I don't know how to put into a sentence. And if I could, I wouldn't have a podcast, I'd have a T shirt. So you have that too. But I do have t shirts too. But that's when it's not going to break down to like be bold, or you know, Pre-Bolus or something like that. But anyway, I don't even find that sad, to be perfectly honest with you. That's been one of the real oddities of the last couple of weeks. Like I can make myself myself sad about my mom. Like I stopped deleting or voicemails when she got cancer two years ago, and I still have some I haven't listened to yet. I could go listen to one right now if you want to see me cry, but but I am not. I am not sad about my mom's life or how it went or how it ended. I think partially it's not because she had some like amazing life. It kind of sucked if you step back and look at it realistically, but she never acted like it sucked. So I never thought of her as like having that situation. I don't know. I think you can live with anything. If you if you have the right attitude. That's all. Geez, wait a bomb everybody out there a great job. Do you have any other sad questions? Or was that? No, no more question. were sad questions. Okay, I did not make a list. I apologize. Do you think it would stun people to know that I sat down thinking this lady's last name makes me think of bears necessities. And she wants to talk about how to be aligned with people in management and how to be in like an advocate and help. Like that's all I thought when I sat down. And I knew you were weren't from America because of your timezone. That was literally it. That was my preparation. I apologize. You live on the edge. Is that the I Am? Is that a scary idea to you? Yeah. Is it really? Oh, I interviewed like I said Jake last night from Dexcom. And it was like 45 minutes before it was going to start. And I was like I could probably cut the front yard before this happens. I got the mower out. I was like, I'll cut the yard, then I'll go talk to Jake. And then I'll cut the back yard. And then I'll come in and edit the podcast. And I sat down with him. And I did have that feeling later. I was like I wonder if this would make people nervous. And why more importantly, am I not nervous by it? That's a mental illness probably right? Like why am I not nervous to talk to somebody and have it recorded? And then go let a ton of people listen to it? Well, you don't

Debrah 1:18:12
have you. Have you recorded your 1,000th episode yet?

Scott Benner 1:18:15
I mean, yes and no. So I have enough recorded that one of them could be the 1,000th episode, but I'm going to make a 1,000th episode. So no, I guess is the actual answer.

Debrah 1:18:29
Yes. And no. Yeah, I think when you've been doing it as long as you have be pretty confident. I

Scott Benner 1:18:35
wasn't upset the first time I did it. I'm telling you, there's something wrong with me. I sat down the first time I did. So the first time I did this in 2015. Maybe January 2015. Might have been a little sooner than that. But like I've said on the podcast before, my intention was to like read my blog posts into a microphone, which obviously wasn't a good idea. And I figured that out pretty quickly. But while I was figuring that out, this guy Adam Lasher was all of a sudden on American Idol. And he had type one diabetes. And his uncle was Carlos Santana. And I reached out to and I was like, you want to be on my diabetes podcast. I left out the part where there wasn't really a diabetes podcast yet. It was just the thing I was thinking about. And he said yes. And so I sat down one night and interviewed him and I've never gone back to listen to it. Because it probably is awful. I don't know how good I was at it. But I wasn't nervous. And that I worries me. Anyway, all right. Is there anything else we should talk about?

Debrah 1:19:42
I did have one very quick one was probably not quick but how do how does the US respond to type one in educational settings so they inclusive like we have so many issues here with certain provisions not taking Jack because I think they just Think managing his type one is seems like too hard work. Is that the same over there?

Scott Benner 1:20:05
Yes, it is. My is my experience. And yes is what I've heard from most people. There are some people who will say, we've had like an amazing time and the school has been terrific. I also don't know what that means. Also, I think it was a dig at me when you said this might be isn't a fast thing. I feel like you were like, Scott's gonna talk a lot. But But seriously, I think the problem isn't the educational system. I think it is exactly what you said, it's a new scary thing that people don't want to be involved in. They do not want to kill your kid, like no one wants to be the one who makes a bad decision. And so they throw it back on you. And they say you find a way for that not to happen. And we'll do as much as we can, as much as the law makes us. And then there are some people who go over and above. And I think that the over and above people are when you hear somebody say, Oh, I have a great experience. I have a terrific nurse, my schools great, blah, blah, blah. Having said that, I still don't know what great means. It feels a little bit to me, like when people come on and say, Oh, I'm doing terrific. My onesies. Fantastic. I go, what is it? And then they go oh, well, you know, it's it's it's 7.8. But it's down from nine, which is fantastic. You've moved it from nine to 7.8. But you've said it's fantastic when it's not fantastic. Right. Right. Right. And so I think that people, when they're happy with something, I think they say it's fantastic. It's all subjective. Yes, yeah. 100%. And what I would tell you is that you're not going to find a school person, a teacher, you know, a school nurse, an administrator, who's going to understand that the way you are. And that's, that's going to be at so what you're measuring is there. I think you're measuring their ability to say, please explain to me what you need, and we will do our best. And then for them to actually follow through. Now, if you're actually hitting pushback, that to me is fear. That's either it's legal fear, or it's actual physical fear, where they're like, We don't want to be involved in this. I've seen I've seen both. I've seen. I'm not making that decision. And I've seen I'm not doing anything that you can sue me about later. Like, like, I've seen it both ways. And I don't I don't know that I I don't know that if you put me in that situation. I wouldn't say the same thing. If I wasn't me, and I didn't know about diabetes. You know what I mean? But so what are you experiencing?

Debrah 1:22:41
We've got a situation where one provider childcare provider aren't prepared to take him on. Because it just well, they'll they'll throw me all sorts of excuses, but it feels like, it just seems like too much hard work. Yeah,

Scott Benner 1:22:56
I would imagine that's true. We went to Arden go to nursery school preschool, and I had to sit in the parking lot while she was in there. So in order to give Arden a preschool experience, three hours a morning, I sat in my car for three hours a morning, and then came in and checked on her once in a while because they would not be involved in it. And if I wouldn't have done that I wouldn't have been able to find a preschool for when I got her into elementary school. So kindergarten her first year. I tried so hard to get them to understand the nuts and bolts of diabetes and where things could go wrong in and that's all I was trying to do. Like I wasn't trying to keep our agency at five or something like that. I was just trying to keep something bad from happening. You explained it, laid it out, wrote it down. They ignored it. They were like it'll be fun. It was that like it'll be fine. Like it was like watching someone smoke a cigarette going like is not gonna happen to me. Like it really felt like that if it wasn't for the fact. Like one of the luckiest things that happened to Arden is that when she was in kindergarten, a little boy with a heart condition had an episode when they were supposed to test Arden's blood sugar before she went out on the playground. And so they got focused on the little boy. I can't believe I'm saying this was lucky but they got focused on the little boy forgot Arden. No one checked her blood sugar before she went outside. Luckily, I I was on a timer with them. I made them call me and tell me her blood sugar before recess every day. And then I would tell them what to do before she went out. So I didn't get the call. I laid back for a couple of minutes trying to be like a human being like not on the phone. 30 seconds later going, you know you didn't call me but a few minutes into it. I called the office I got forwarded to the nurse's office. She answered the phone. She was frazzled because she was helping the kid with the heart thing. I said where's Arden and she goes Oh, Arden and then she hung up the phone. And I was like, my didn't seem good. So I just sat there thinking, okay, like I put myself in her position, she forgot Arden like she's guiding. Well, they found Arden like on like monkey bars with a blood sugar of like 50. And that was enough of a situation where I could go into an administrator's office and say, Look, I've been trying to explain to you what this is, you've ignored me. I was like, now today, we came within a couple of minutes of Arden getting dizzy falling off of, you know, a monkey bar, maybe having a seizure for blood sugar gets so low. And I was like, and then when that happens, I said, I will spend the rest of my natural life punishing you in any way that I can think of mostly legal. And I was like, or we could just do these couple of things. I actually said that to a person in their office sitting across their desk from them, I was like I will spend the rest of my natural life suing you is what I said. I said, nothing else will matter to me. I said, my name will be on the school, we will dedicate it to Arden, all of the money you make will come to me. I was like, I will do this forever and ever. Because you will have ruined my life. And I was thinking I will have no other outlet for the hate that I have. He's looking at me and I'm like, trying to make my point. And I was pissed, by the way to it. It was all real time it happened to her. I made sure she was okay to write to the administrators building stood outside of his office. Totally unfortunate to see me. And so then they did the things. And then she was okay. So something bad almost had to happen so that they could get scared enough to do the things they were supposed to do. And that's not gonna happen.

Debrah 1:26:39
I feel like we were we're suffering the opposite, which is they're too scared to take him.

Scott Benner 1:26:47
Not even they're like, you can't get them in the building. And that's his age too, right? Yeah. Is it? Is this not?

Debrah 1:26:55
Illegal? Yeah.

Scott Benner 1:27:00
So what do you do? Who do you say, Oh,

Debrah 1:27:01
well, that's I mean, there are there are steps we can take. It's whether we're going to take them to be honest.

Scott Benner 1:27:07
I think they know that too. Like you don't you don't want to get involved in that. I didn't either, by the way, like the last thing I would ever want to be involved in. Is some like legal wrangling. It's not it's not something I have any interest in at all. So I think they know that too. It's almost like when an insurance company denies you for something, they're like, they'll probably give up. You know, that's, my wife does that. And it's

Debrah 1:27:33
interesting. You say his age because I I have every faith and hope that the older he gets and the more he can manage himself, the less we will be faced with this issue. Yeah.

Scott Benner 1:27:44
Oh, one of the most popular episodes of the podcast is the third episode, where I just talked about how Arne and I manage things over text. Like because you will you remove the other people from the scenario. Now they're just emergency personnel if you need them, and they're not caregivers, that's really, to me that's one of the things that kept Barton's kept me able to keep working on art and say once a while she was in school, was that really we weren't involving other people were like these false limits on when she could be tested her when she could get insulin, stuff like that, like we just did it on the fly. I don't know, it worked out well.

Debrah 1:28:25
But congratulations on getting a child to respond to your text messages. That sounds like naming fee either.

Scott Benner 1:28:31
She and I have the same personality. So we get along pretty well. So that's pretty good. I have sent the live I don't know if they even have it anymore used to be able to send something called a Find My iPhone sound to a phone you owned. And it's a horrifying noise. And it's embarrassing to children when they're in school. So maybe once or twice, I sent that noise and I got back the like, you can't do that I'm at school. And I said all you have to do is answer and this will never happen again. So little bit of that. And mostly, mostly she is desirous of, of managing it and doing well. And I do think there's for some people, that's not as important to them. Kids, adults. You know, I got lucky I could easily be on here talking about like the struggles we have because she pushes back against everything. It's just this is how this worked out. And and I do think there's a way to get to it within reason. But I mean, if you're in a situation with your kids, where they're just flat out ignoring you, like if you think that's a diabetes problem, I think you're wrong. You know if there's something else going on, and it's showing up in this situation, so I don't know. Good luck with that. Nobody should have kids. It's ridiculous. I do. The very expensive and annoying. The love thing that keeps you You go and but you know, the rest of it's horrible.

Debrah 1:30:06
Amen. Yeah, no kidding.

Scott Benner 1:30:07
All right. Well, thank you so much for doing this with me. I really do appreciate it. Thanks, Scott. Yeah, thanks for having a good microphone too. I don't have to edit this. Hold on one second.

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