Scott Benner 2/12/24 Scott Benner 2/12/24

#1129 Colloquially Confused

Melissa is a teacher and a married mother of two. Her 14 year old daughter has type 1 diabetes.

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Scott Benner 0:00
Hello friends, welcome to episode 1129 of the Juicebox Podcast.

Melissa is a married teacher and mother of two, her youngest child, her daughter has type one diabetes and today we'll tackle a number of different topics including how her daughter didn't initially want an insulin pump. 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 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 cozy earth.com. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. This episode of The Juicebox Podcast is sponsored by ag one drink ag one.com/juice box. When you use my link and place your first order you're gonna get a welcome kit, a year supply of vitamin D and five free travel packs. US med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years, you can as well us med.com/juice box or call 888-721-1514 Use the link or the number get your free benefits. Check it get started today with us med.

Melissa 2:12
My name is Melissa. And I am a mother of two a boy 16 And a girl 14. And my daughter is the one who has type one diabetes. And I'm a teacher and a married we have a dog. And we live in the Midwest and everybody in our family is blond haired blue eyed. We all look exactly the same. And my daughter was diagnosed in 2021. June 15.

Scott Benner 2:46
Okay, Melissa, do you have a car?

Melissa 2:47
We have? A couple a few actually. Yeah,

Scott Benner 2:51
actually, when you mentioned like when you started listing other things you own like dogs and stuff. I thought maybe we could go through your possessions.

Melissa 2:57
I just figured I'd give you a picture. You know, quick quick yeses

Scott Benner 3:00
and noes. A television in the living room. Yes. Okay. You have a bed the bedroom? Yes. Excellent. Does the dog poop on the grass? Yes. All right. I got your life. Don't worry. I'm all good.

Melissa 3:12
What kind of teach your son our son picks it up? Because

Scott Benner 3:15
he really Cooper? Yeah, God can I tell you Kelly hates it, but I don't pick up dog poop. So I have a theory about dog poop. I think rain takes care of it.

Melissa 3:24
It will if you let if you let it go long enough or snow.

Scott Benner 3:29
And Kelly thinks that I should not cut the lawn without picking it up. But I don't do that. I would say if I bet you if Kelly and I went to therapy. Inside of the first three sessions, she would mention that I don't pick up the dog poop before I cut the grass. Oh

Melissa 3:45
my gosh. Well, it's fertilizer, I guess. Right? That's how I look at it. I bet you those spots are nice and green. I'm

Scott Benner 3:50
just trying to get your kid out. I happen to do that. That's all. So kids need to do something. What kind of teacher are you?

Melissa 3:58
I teach? Well, I can teach Spanish and phys ed for middle school. And I have been teaching phys ed mostly for the past couple of years. 22 years teaching Spanish for 20 of them and to the past two years visit

Scott Benner 4:15
did those kids ever actually learned Spanish?

Melissa 4:18
You know? I mean, they do while they're sitting in front of me. But then if they don't go out middle school, so if they don't go on and take it in high school, then they'll say I don't remember anything. I hear you know, I gotcha. Parents come in at conferences and be like I had Spanish all through and I don't remember a thing. It's like Oh, good.

Scott Benner 4:38
I have to tell you. I took French for three years. And I know North means nine so Oh,

Melissa 4:44
that's not French. Is it? Or is it? Yeah, is that German and French?

Scott Benner 4:49
Nine. I'm pretty. Oh my God. Are you telling me the one? The one thing I know might not be right.

Melissa 4:53
No, I do not know French or German. It just sounded German. All right,

Scott Benner 4:56
Melissa. That's enough of this. So We're gonna move on now. daughter was diagnosed at what age? She was 12 Okay, it's been a few years then. Yes, couple years now. All right. Was that string COVID Still? Or was that sort of the end of COVID?

Melissa 5:11
It was the end. We still had masks on in the hospital. And you know, they wouldn't let my son come back. Just my, just my husband and I. But yeah, it was past COVID. But we still had protocol. I guess. I'm

Scott Benner 5:26
gonna jump right into this because in your description of why you wanted to come on the show. You're like, honeymoon. Crazy. Oh, honeymoon. Yeah, no one's ever been that specific about it. So let's just find out a little bit about the diagnosis and then jump into the honeymoon. Okay, what did you notice about your daughter that got you to a doctor or hospital. I partnered with ag one because I needed a daily foundational nutritional supplement that supported my whole body health. I continue to drink ag one every day because it works for me. Ag one is my foundational nutritional supplement. It gives me comprehensive nutrition, and it supports my whole body health. Drink, ag one.com/juice box. When you use my link to place your first order, here's what you're gonna get a free welcome kit that includes a shaker scoop and canister, five free travel packs, a free year supply of vitamin D, and of course, your ag one. So if you want to take ownership of your health, it starts with a G one. Try ag one and get a free one year supply of vitamin D and five free ag one travel packs with your first purchase. Go to drink ag one.com/juice box that's drink ag one.com/juice box, check it out.

Melissa 6:44
All right, well, at the time, I hear a million people well, not a million, but 1000s of people on your podcast say just explaining away the symptoms. Because I would say the first thing we noticed was that she had dropped a little bit of weight. But she was running track and swimming all at the same time for school and then swimming for our club. So it would make sense that she would drop a little bit of weight, I thought and then it was the end of the school year in the summer. And noticing that she's been thirstier and wanting to like eat ice all the time, but it's hot. And she's doing two sports at once. So made sense. She was becoming super moody. And she's 12 Well, maybe that's what happens when, you know, you start to be like a preteen or whatever. And so all of the things that just just figured it was just normal stuff. But I remember specifically one time the after it was the last day of school. So the next day Saturday, I was taking some things to the laundromat. We have a washer and dryer but like the bedding was you know,

Scott Benner 7:54
I love that you were just like, Hey, I can't afford I can afford my own washer. I just want to make sure everyone knows I got one in the house. But this is for the big stuff. Okay,

Melissa 8:03
or the dog the washer dryer.

Scott Benner 8:05
I just can't I can't fit that or is this? Is this a humble brag that your comforter is so thick and lush. It doesn't fit in a regular washing machine? No,

Melissa 8:12
it's probably because we let our dog on our bed and it was so gross that we had to take it to the laundromat. I mean, let's be honest.

Scott Benner 8:19
Someone else's washing machine. Alright, there's some honesty. Go ahead what else we got? Yeah,

Melissa 8:27
so my daughter and I went to the laundromat. And I saw someone from work. You know, a lot of people that I work with live around where I live. And he was there bringing some like hunting gear, I guess, or whatever, to the laundromat. And my daughter was like, so short and rude to him. And I was like, What is wrong with you? Why in the world, you know, like, he was like, Oh, you're getting ready for a vacation? And she's like, Yeah, go to hell. Yeah. And that's not like her at all. And then we sat down, like waiting for the laundry and she fell asleep. And I was like, well, there's something wrong. Yeah, I think there's something wrong, but I didn't want to scare her. And then we had family come into town the next day, and my brother in law from Louisiana, was in town and was like, What's wrong with her? And I'm like, Okay, there's something wrong. So what do I take her to the doctor and say, I think there's something wrong but really there was nothing you know, I just felt so weird taking her in but I did anyway,

Scott Benner 9:27
let me jump in for a second did she did you think something like mentally was wrong? Or did you think physically because I mean, she like

Melissa 9:34
maybe both like, we went to like a party and end of the year pool party and she just like looked so upset the whole time. I thought, oh my god, what is wrong with her? You know, you know, what's the matter? Nothing. I might add, you know, that kind of answer. Like the night before I took her to the doctor or made the appointment. I did like Dr. Google searches and said to my husband in the morning, right before I made the appointment, my doctor's office. So awesome. And they didn't like that day got her in. And I told my husband, I think she has type one diabetes, but I had no idea what that was I just saw, these are the symptoms I didn't look into, you know, anything else. And he's like, oh, okay, you know, he didn't know either. So, took her to the doctor that morning after swim practice, she went to swim practice, got her out, went straight to the doctor. And I distinctly remember her drinking a sprite on the way. So that probably didn't help things. And he said, definitely not type one diabetes, but let's do. Let's check it out. Just in case. Let's get everything going. And you came. Yeah,

Scott Benner 10:42
I liked it. He put himself on the line there. That was like, Sure. I was wrong.

Melissa 10:46
Yeah. And he's our like, he's the family practitioner, you know. So he's all of our all four of our doctors since my son was born. So 16 years. And then he came back and his face was white as a ghost. And he was like, Okay, well, scratch that. It is and you're going to need to go straight to the Children's Hospital. Please don't go home. Call your husband on the way. I won't make you take an ambulance if you promised to go straight there. And I was like, What in the hell? Yeah. You know, like, Yeah, I thought she had this but the hospital seriously told so naive also,

Scott Benner 11:23
don't don't pass go don't collect $200 Don't slow down like don't

Melissa 11:27
don't get closed. Don't do anything. He's he said, like, prepare for a stay, you're going to be there. And I'm like, I'll only

Scott Benner 11:34
not put you in an ambulance. If you promise to drive directly there that would have freaked me out. I would have been like, Oh, yeah. And

Melissa 11:41
she's looking at me. Like, what? And I'm just like smiling. Like, it's gonna be okay. You know, don't worry. And then, so we get to the hospital. And she's drinking that sprite still, because she's so thirsty. And I'm like, we can't stop for anything else. No idea. That probably that's a horrible idea. And then we get there and walk into the emergency room. And she's just leaning on the counter, like, elbows on the counter header hands, staring. And our doctor apparently called ahead, and they were like, waiting for us. Took her back. And it all began from then but I swear as soon it was one of those things where like, as soon as she started getting insulin, I am assuming like the life interface came back. Sure. Instantly, but come to find out she had lost like 20 pounds. Yeah,

Scott Benner 12:32
Melissa dying is hard on you. And that's what's happening. Yeah,

Melissa 12:37
I we still like now what now what we can kind of I hate to say joke, but I'd be like, whatever come across a picture. And I'm like, You were literally half dead in that picture. Yeah. 100% didn't know. Yeah.

Scott Benner 12:48
So is there any other type one in your family? No. Okay. No other autoimmune stuff.

Melissa 12:55
Just thyroid, my mom and my sister. Okay, and that is it. That's Mr. Has Hashimoto. Right, I believe. And my mom, I'm not sure what she has, but she's been taking thyroid medication as long as I can remember. Yeah.

Scott Benner 13:10
So she probably had Hashimotos before they knew how to test for the antibodies. My

Melissa 13:13
son has a peanut allergy, which I think some say is also possibly autoimmune.

Scott Benner 13:20
Yeah,

Melissa 13:21
hold on a second. I don't know our doctor has mentioned it a few times. I know you're gonna Google

Scott Benner 13:26
it. Your doctor also said that that kid didn't have diabetes. So let's take a look. He's an awesome doctor. Oh, yeah. Sounds amazing. allergy. I listen, I think most allergies are immune responses. So let's see but are they calling it Peanut allergens can trigger a potent and sometimes dangerous immune response. I don't think that alright, let's be more let's be more clear is a peanut allergy and autoimmune disease

Melissa 14:09
and no, I don't

Scott Benner 14:11
see it. I got an interesting article from like 10 years ago peanut allergy turned off by tricking immune system. I'm not going to read that one. But NIH article from 111 immunological similarities between selected autoimmune diseases and peanut allergies possible new therapy? Yeah, they're not calling it an autoimmune disease. But I think that the way it works is the link got them and he's got them looking at ways to help it that relate to autoimmune anyway. Anyway, yeah. Okay, so the Son peanuts

Melissa 14:45
and we thought that was bad. Like we thought him having a peanut in all like all nut allergy was bad. You know, like, oh my gosh, this is the end of the world.

Scott Benner 14:54
diabetes will straighten up your perspective on that. Oh, yeah. What if your dog eats peanuts, Craps in the yard, your son can't pick it up that is that correct?

Melissa 15:01
He can be around it. So, get out of that.

Scott Benner 15:05
I'm never getting that kid out of picking up that. Okay. That was my last try kindling. See peanuts. Let's not go down that road. I don't even know. Okay, so here we are in the hospital life's coming back into her face. How soon before she's kind of herself again, like in her head. I used to hate ordering my daughter's diabetes supplies. I never had a good experience. And it was frustrating. But it hasn't been that way for a while, actually for about three years now, because that's how long we've been using us med us med.com/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. And they always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom G seven. They accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do.

Melissa 16:49
Now that was it's been a long journey. I feel like it just took a while for her to come to grips with it.

Scott Benner 17:00
Yeah, so it was hard to accept. Yeah. Is that still going on to some level?

Melissa 17:05
Yeah, I think so. But it's I mean, it's way more I don't want to say like nonchalant but way more in the background, I guess now than it was, you know, two years ago. It's just been so like, up and down. So for example, she came home from the hospital, she was on 12 units of Lantis. And I think her carb ratio was one to 10 When we first came home, okay, he came home from the hospital. And the next day she went to swim practice, and not fully understanding what that was going to do to her, you know, like, like, it does, you can't just do 12 units Atlantis and a one to 10 carb ratio 24 hours a day when there's swim practice involved. You know what I mean? Like the activity level that she has going on every day makes things crazy on top of whatever else she had go on. So it was nuts. And like I was on the phone with the diabetes educator at our hospital every single day for almost an entire year, either on the phone or messaging with them. Was

Scott Benner 18:11
that because things just were not going the way you expected? And you and she's getting low from activity and that kind of stuff.

Melissa 18:17
Yeah, things were not going the way that I was we expected them to go at all and like even like sometimes our educator would be like, gosh, she is honeymooning so hard. Let me get back to you. I'll call you back like in an hour or whatever. Like, you know, it was always like a big like up in the air. I never felt like we could just nail something down and go with it.

Scott Benner 18:40
And she's MDI at that point.

Melissa 18:42
Yeah, she was for like six months. She was absolutely against a pump. What's at all at all? Like, no, don't even talk about it. I don't want to hear about it. I don't want to see one. I don't want to think about it.

Scott Benner 18:55
Yeah. Do you ever look back? She's using a pump now. I assume? Yeah. What was the just that new thing? Like I don't want to something attached to me feeling?

Melissa 19:03
I think so. She just did not want anyone to know. She did not want anyone to talk about it. She did not want to be treated differently. She wanted to like pretend like it wasn't happening. I think she dealt with it. She was she's amazing with it. Yeah. But she doesn't want to discuss it.

Scott Benner 19:20
Okay. What about the other side of the like, that's how she handled the news and what's happening to her, but what about the stuff you saw with her being short with people falling asleep that all go away pretty quickly? Oh, yeah. Yep. So her personality came back. Her personality

Melissa 19:37
absolutely came back. Yeah, she stayed like a little bit more closed off because she had this new thing she didn't want anyone to know about but she was not rude and nasty anymore. You know, she did come back. She bounced right back.

Scott Benner 19:51
No more ignoring people. They're like so you're going on vacation. Leave me alone. Yeah, okay. So alright, so that all comes together. Now, looking at her insulin use now versus your honeymoon period. Is it significantly different?

Melissa 20:08
Oh, yeah. So we, like I said, we started at like 12 Lantis went to 10 carb ratio. And then she slowly within like a six month period went from point A was the what I just said to the endpoint in six months, she was on point five Lantis. So we're drawing it with a needle out of the pen. And like, one to 85 carb ratio, basically like,

Scott Benner 20:34
Oh, wow. Oh, wow. So she had like, like she was in DKA. has had a need that that's pretty, I mean, one to 10 and the insulin that what do you think she weighed a diagnosis, I know she weighed 83 pounds. Alright, so those, those numbers all just like kind of make sense. But then over the next couple of months, her needs dissipated significantly.

Melissa 20:59
And then disappeared. She went on the dash for about a month, she finally agreed to go on a pump. Because it was like, our the educator was like begging and begging, please go on the pump because it felt like sometimes she needed a little more basil. Sometimes she needed none. Like the point five was making her eat constantly, sometimes. So he was like, please go on this pump so we can get you the basil that you actually need when you need it. You know, so the dash, that was amazing. But it only lasted for like a month and she was going low for like 2448 hours straight. And he finally said take it off, take the pump off and let's see what happens. And she went without insulin for about eight more months.

Scott Benner 21:44
Okay, now, Melissa, this is what I'm going to ask you during that. Did you ever have that unreasonable feeling of oh my gosh, they were wrong. Three days? She didn't know that. Yeah. Okay. So tell me a little bit about that. Yeah.

Melissa 21:56
So I think that was what messed us all up. Because we were like, Okay. And everybody they made a mistake. It she she had this was like an acute type one diabetes simulation, because maybe she had COVID. And it's she's fine now. And I truly believed it. You know, like, I was like, they're wrong. It can't happen. I'm sure it can. I still listen to the podcast all the time. Because I knew in the back of my mind, I'm like, Okay, you're being crazy. You can't forget how all this works for when this does come back, basically, you know, and it did. It came back. And here we are. I think

Scott Benner 22:33
that it is one of the least talked about things about a honeymoon. That is the hardest to deal with. Is Yeah.

Melissa 22:42
And that's kind of why I never heard really anybody come on and really like hash that out. In it is bitch. Yeah. When it comes back, it was like, it was almost worse than the first time I would say it was almost like being diagnosed twice. Yeah,

Scott Benner 23:00
I had. I don't remember how long into Arden's diagnosis, it was if I'm being honest. But it might have been a fair amount of time. And I don't know what happened. But there was this one day that turned into two days, where Arden just did not need insulin. And I don't know what it was like we were feeding the tiny bit of basil that she was getting constantly. I wasn't injecting for food. And, you know, the first day you just feel like this is horrible. Like, because it just throws everything off. Yeah. And in the second day, I thought maybe she doesn't have diabetes. Yeah, yeah, maybe this was all been just a big mistake, and she doesn't have diabetes. And then moving into like, through that second day. I, you know, happened to know our pediatrician. And I had the wherewithal to say, I like when I call them, I knew how crazy I sounded. And, and I knew that I was just hoping. And I was like, I'm gonna say something to you. And then after I say it, you tell me I'm wrong and get me off the phone. And he and he goes, okay. And I was like, Arden hasn't used insulin in two days, and I don't think she has diabetes. And if you could hear sadness and silence. Oh, yeah, I could hear the sadness in his voice without him saying anything. Yeah. So anyway,

Melissa 24:26
I think we had like two endo appointments. Without insulin, you know, and they would like, make it a point to reassure me and be like, you know, this is it's coming back. Just we don't know when, you know, because they even were like, well, yeah, I don't know. But there's one other person we had that is kind of like this, you know, I felt like how can there only be one other? This is it. We're the one but yeah,

Scott Benner 24:53
exactly. The whole world experiences this in one way. We're gonna be the one and that's how Oh, desperate you are? Yeah, you know, like it just to be rid of it. Anyway, I think it's a thing a lot of people must go through. And I don't think it gets talked about a lot. And I don't think it's easy. So anyway, give it some voice here, and maybe it'll help people to know. Alright, so how long does this go on for?

Melissa 25:17
I feel like I will never forget how long this I think it was like eight months, though. It was a long, long time. So she's going into ninth grade. And at the beginning of eighth grade, it you know, it started to creep back in, like, I remember them saying, well, if she wakes up consistently, because she were her Dexcom the whole time still. So if she wakes up, you know, it consistently above 126, you know, three days in a row, call us. And I thought, okay, oh, my God. So this is like three days of dread. 121 2125 She's waking up at one, I think 150. And I was like, crap, I think, you know, I think this is it. And it just kind of like slowly crept in, while she started to like really kind of restrict carbs at that time to, which was not healthy.

Scott Benner 26:07
Oh, so was there a situation where she kind of got it into her head that she could stop the diabetes from coming? Yes. Sorry. Has that stuck to her as well? Did she develop an eating disorder or anything from it? We

Melissa 26:20
right away, called I, she right away had video therapy appointments. Because I was not ready to let that be like another obstacle that was going to be like a thing. So we really just like hit that hard. She was very resistant to that. But it helped a lot. And she just kind of like turned it right around and said like, hey, if it's common, it's common. So I'm

Scott Benner 26:45
glad because you can see where that would happen where you start to get it into your head. Like I could stop this. Oh, yeah, I

Melissa 26:50
even was, I mean, I hate to even admit, but I was like, I one foot on board. Like, let's try it, you know, but well,

Scott Benner 26:59
by the way, there's nothing wrong with like, in that situation, there wouldn't have been anything wrong with eating a lower carb diet to try to make things last a little longer. But you can't get that magical thinking in your head that you're going to somehow if you've eat few enough carbs never get diabetes.

Melissa 27:14
I know. And plus she like I mentioned, she's she's got swim practice two hours every single week day. You can't lean like she was starting to she's like, I'm I can feel that I'm not strong. And like, I think this is like not healthy.

Scott Benner 27:31
Yeah, you're not she wasn't eating probably right. Yeah, by the way. It's not like, however, you know, like a teenage girl is like, well, I'm going to limit my carbs and make sure my macros are right. And I really she was probably just eating low carb stuff that didn't have a ton of nutrition of it. And she's going backwards. So yeah. Oh, man, that sucks. When it finally happens, those three days in a row calm, you're over 125 You get back on insulin. How long does it take for her then to go to like an amount of insulin that you you see now and think of is normal? did happen quickly? Or was it still a slow transition?

Melissa 28:05
It's been a slow transition. I feel like I really don't know what wouldn't be normal, you know, for her age and her like, activity level and stuff. But it is a constant ebb and flow still to this day. She's on the Omnipod five, which is a absolute Godsend for what her situation is because she will go from I just looked on her controller like someday she's got six units of Basal. Someday she's got 13 units of basil. Wow. No kidding. Sunday, she uses 30 units total Sunday she used yesterday was 19. The day before was 30. Yeah, yeah.

Scott Benner 28:47
I is that wrapped around? Hormones Do you think?

Melissa 28:53
I think it's a combo of hormones and activity. Like as the week she has two hours of swimming every day, every weekday, and she's got the weekend days off. So as the week ramps up, her needs are less and less those days. And then the weekend hits and they're more and more and then it just flows back to needing less and less and then more and more like every seven days.

Scott Benner 29:19
That sounds like a great time. Yeah.

Melissa 29:22
So it's like I do have different basil profiles. I know I totally know that the basil and the correction factor and everything does not affect automated mode. Get it but we are flipping the manual mode all the time, especially on like Sunday when I'm deprived five isn't quite sure what the hell is going on. I can't catch up. Then I have like the least active Sunday Basal mode that we flip it to because

Scott Benner 29:51
her activity during the week goes way up, her needs go down and then the activity goes away her needs go back up and then it doesn't to the higher need You'd then she sits still doesn't have higher need. I gotcha. Okay. And

Melissa 30:04
then depending on when that pod change falls, it could be like one of those days where Sunday is like, amazing because she's like, I don't, it just depends. So we utilize every single feature that that Omnipod five friggin has to offer. Yeah, constantly

Scott Benner 30:21
I do things that I don't think it would occur to people, like if Arden has a pod change coming up. And she, for some reason is in a situation where her needs are less. I'm like, ooh, change your pod now, because new sites don't work as well. So maybe we'll get out of this low blood sugar by changing the pump here. Whereas I think most people would think of it as Oh, when I change my pump site, sometimes my blood sugar gets higher, and it's hard to bring down. But if you can coordinate that with a moment when you don't have this, I know it's, that's pretty, like specific. But after you do this for a while, you find ways to make all kinds of stuff like that. Oh, yeah. Yeah,

Melissa 30:57
we've we've done pad changes. I'm like, we'll change it. Right before?

Scott Benner 31:02
Yeah, like it just before swimming, because then it'd be like doing a Temp Basal down or something like that. Yeah. You just have to think about, it's hard sometimes to keep it all in your head. But there are ways to match up the impacts you're getting with variables, where they'll actually help each other instead of hurt each other. Yeah.

Melissa 31:21
And when that the pod, I'm like, ooh, we're on a roll. It's only Wednesday. We don't need much. Let's get it changed today, you know, or, I don't know. Yeah, I totally know what you mean. But we definitely work with it.

Scott Benner 31:33
The other day, I could see Arden's needs were going up because of hormones. She's home from school, and the pod was coming towards the end. And like the effectiveness, the effectiveness of the pod was waning, it was also fighting with the need, I'm thinking like, put a new pot on here. Like just do it a little sooner, this is a perfect time to get a fresh pot on because of the need. And I mentioned it and I got it, I got ignored, nobody listened to me. And then when we all paid the price later when her blood sugar shot up, because she ended up changing the pod like in the throes of this need. And then we had to like, then we had to put extra effort in, but had had we just changed the pod like eight hours earlier, we would have missed it. And I hope one day that Arden sees those things the way I see them, and I'm sure she will. But you know, for now, it was just a good experience. Like, like, an example. I guess, that um, that we could have done something differently that would have helped. So anyway, yeah, timing is huge. Yeah, it really is a big deal. What made you want to come on the podcast?

Melissa 32:39
Well, well, first of all, I love it. I have learned everything I know, basically, from your podcast, I think I've listened to those. Another thing I've had those math episodes like 820-820-1822 are the like golden gem. I use those all the time because I like actually, I haven't used them in a little I haven't changed her Basal rates in the manual mode in a little while, maybe like three weeks now. So I feel like maybe we're like nestling into a spot. But for since they came out, I have been changing her manual mode settings constantly. Like I wouldn't when she started on the Omnipod five, her settings, her carb ratio was like a one to 60 and her insulin sensitivity I think was 180. I want to say okay, so like it was so weak, everything, you know, anything would move her up or down. But now her sensitivity I think is 55. And her current ratio is six one to six. Okay. Yeah, so some days like, maybe like the carb ratio, we, I don't know. Like some days her Basal is like 3070. Some days, it's 5050. Some days, it's 4060. It's never actually very constant. But I feel like that's just because we were using every mode activity mode, auto mode, manual mode all day.

Scott Benner 34:10
I love how you're just like switch, switch. Go back. We do. Yeah. What's your best advice for going from manual back into auto? How do you do that without causing a problem?

Melissa 34:21
The reason why I would go into manual is if I know that her needs are like if we're going from a Sunday where she used like 35 units and it's a pad change and we're going to an activity Monday, she ain't going to need that and it's going to cause a lot of lows. So I go to manual and go to her highest activity Basal rate and let that go for a you know let that go for a day. I know that the pad is usually for like three it's sometimes we stay in manual mode for like three days straight. Okay, depending on when the pad changes, but I usually we go to auto mode at night. which is awesome because she would have lows almost every night because of her activity level. And she does not have lows at night, though. Like it keeps her some nights around 120 don't love it. But if we don't use man at all mode, then there's no Basal rate that will keep her because it changes every hour. You know, like in auto mode, some, like two hours in a row, nothing. The next hour, point three, the next hour point six, the next hour, nothing. How would we manage that? Yeah,

Scott Benner 35:33
I have to tell you, I think what I'm getting most out of this conversation loving is the kind of like joyous way that you're flexible, because I could see talking to a different person and have them say the thing is supposed to do this. And you know, just because we're throwing crazy variables at it all day long. I still I just wanted to keep up. No. And that might not be the case for everything. But I love how you're just like, look, it basically it's two tools. And one, I can use it like an insulin pump, like regular old in manual mode, I can go over to auto mode and do this. And I can make it work for our situation and you don't seem angry about it or like irritated. Why are you nice? What's going on? Well, I'm

Melissa 36:16
so grateful for it. Like Like I just said it night. How in the world would I even know what Basal rate to choose for her at night? Like, you know, like, it would be insane. I'd be up all night. I feel like trying to I'd be I'd be doing all the work myself.

Scott Benner 36:34
Yeah, don't worry, I've done that in the past. Before I have to.

Melissa 36:37
I mean, we've done that too. But it's just so like refreshing to know, okay, I know at night, even though it's going to keep her a little bit higher. Sometimes. I would rather that than have her be like at 40 because it's pumping out point six. And she didn't need that for the two hours in a row or something.

Scott Benner 36:57
I just liked the way that you kind of go with it. It's nice. Sometimes you hear people complain so much about things. And you know, I somebody the other day was like, my Dexcom never last and always last eight days or nine days. And I'm like, Oh, that's terrible. Like, you know what happens? Like you have to call the company and they replace it. I'm like, Oh, yeah. Like, okay. It's horrible. Like, like, what if they just told you it lasted eight days? Would you be happy then? Like, like it like, you know what I mean? Like, I don't? Yeah, I never know what people want. It's a it's a very unique situation, this idea of having diabetes, right from person to person to person. And yet these companies make these things that overwhelmingly work for such a wide swath of people. And it okay, you got to make some adjustments or figure out things. I don't know how you can be upset by that. Like, I think it's because they don't know the the alternative, maybe maybe they're newly diagnosed, they just don't. And that would make sense to me. But trust me, I'll put you on some like, regular and cloudy or something like that from the 70s. And see how quickly you're not thrilled if your Dexcom doesn't last 10 days or your pump has to go from manual to auto once in a while. It's just, it's interesting. I like listening to you talk about it.

Melissa 38:13
Oh, well. I mean, I don't actually mind talking about there was a point in time when I would never I couldn't talk about it without sobbing about diabetes in general. Yeah, just in general, just even thinking about it would just I would, I'm done. I'm over. I can't talk about it. I can't believe this. Why is this happening to my daughter? She doesn't deserve this. I'm over that. Like, I'm just so grateful that we have what we have. She went home actually. She went home with Dexcom from the hospital pharmacy. Yeah. I didn't even know it existed. But my husband is well, he was a football coach at the school that my son goes to. And one of his players, who is a police officer now has type one and was diagnosed right after high school. And he i My husband is like one of those guys who's like, Hey, I know a guy I got a guy and so he had a guy of course who he's like, Hey, wait a minute. I remember this guy's got type one diabetes and called him and he said get a Dexcom right away. So I like told the nurse while we were still in the hospital What about continuous glucose monitor? And she told us like there's a libre, there's a Dexcom which one would you like? Pick Dexcom went home with it. That guy came over that night. The night we got home and put it on her and yeah.

Scott Benner 39:39
Nice. Yeah. Yeah, that's really cool.

Melissa 39:41
Our our like, I hear so many people say that they their endos making them wait for this and wait for that. But ours was like as soon as you feel comfortable. Let's think about a pump. Like they did not want us to wait for anything. Yeah, they weren't saying no Dexcom they just I'd like yeah, sweet. Let's do it. Some,

Scott Benner 40:02
some doctors just, they have these arbitrary rules. And I think sometimes they come from insurance too. Yeah, possibly a good doctor says, Look, you know, I run into sometimes and insurance won't give people a whatever, if they haven't blah, blah, blah for six months or whatever. So they just, they don't bother doing it anymore. Meanwhile, other people have different insurance. So, you know, we're lucky, we're so lucky. Yeah. And they changed in them, the doctors end up changing their ideas about around the insurance, instead of just saying, Look, we should ask for this for everybody and let the insurances that will cover it cover it and the ones that don't won't, you know, but let's why are we getting away from talking about it? You know, I That's terrific. Good for you. Good for her actually having that right away. And she had that, but didn't want to pump right away. But she saw the value in the CGM. Is that right?

Melissa 40:55
Yeah, she Yeah, she saw the value in the CGM, she that you know, let her be more normal. I mean, she already had a phone course. So, you know, it was just nothing, just this tiny little thing. And she normally she would keep it on her arm, but with swimming every day. It's works a little bit better if she keeps it on her stomach. So she tries to keep both things on her stomach. But lately, her stomach has become a little bit sensitive. Okay. I don't know. But it works better. Just everything stays on better if it's like concealed under her suit.

Scott Benner 41:33
Yeah. What's the management like in the house? Like, are you helping? Is your husband helping? She's doing it by herself?

Melissa 41:40
She is at 50. She does. She does it by herself. She did all the shots by herself. I mean, the lady the nurse was in the hospital was like, okay, honey, talking to her. Like she was going to be like, all nervous. And she was like, I'm going to be doing this forever. You just give me the thing. And she just, you know, shot herself in the leg and never looked back. She's you know, I'm not a baby. I'm going to do this. It's fine. I'm not afraid. Just give me the thing. What about

Scott Benner 42:06
decisions about like the amounts of insulin or these things you're doing when you're going from manual to like Baba is that you? A

Melissa 42:13
lot of it is I'll text her, you know, and say switch to auto switch to manual, highest. So it's your lowest activity. You know, I will text her just that stuff. If she's not with me, but she manage it. I mean, she does most of it on her own. I don't like oversee. If she's going down for you know, breakfast or lunch. I tell her how many carbs are in her lunch, like at school. And I just put a little sticky note in her lunch. And then she does what she does. And sometimes they'll say, oh, maybe you did you underestimate? Did you not? You know, little questions like that. But yeah, she pretty much does it on her own. Sometimes she'll just like hand me the controller. And I know that she's done and she wants me to do it. You know, but for the most part, it's on her own. I oversee and you know, like, I'm a partner with her. But

Scott Benner 43:05
what about her Lowe's, she handles? She sees a low and stops it on her own or you get involved there?

Melissa 43:10
Yeah, I think so. Sometimes she says already did you know like, I'll text her and say to Skittles, she keeps getting her Skittles or her, you know, like low in her little bag. I'll say like, Hey, a couple Skittles. And she's like, already did you know? For the most part, sometimes she's like, wait, what? Why? You know, but Melissa, do

Scott Benner 43:31
you think she'll ever get to the age where and I'm quoting now? Oh, my God, chill T F out. Which I think means. And so because I got that text the other night.

Melissa 43:42
We're there we're at a point to like, the Oh my god. OMG I got it as just a stop sign. I get

Scott Benner 43:53
I haven't gotten that one yet. I love that. That's great.

Melissa 43:56
Or, like, if especially if it's in school, she doesn't have very many, very many lows really, actually. But you know, like in school, she's like, I can't text now. I'm talking on my watch, you know, or whatever. But it's like a partnership. I like my huge thing. I don't know if it's like overbearing or what but I like from the very beginning. You You don't have to do any of this alone. Like you. You need a break. Give it to me, I will do whatever you need or want me to do. I don't like expect her to I do it all if she if she wanted me to, you know, I would do every last drop of it if she wanted me to. I don't she's 14 she's got how many more years left to this. I'm fine doing it for her for now are with her. You know,

Scott Benner 44:42
I agree. I think it's a it's a thing that you can be helpful with along the way. I also think that I've talked to enough people, as adults who look back on their childhood and end up saying, I kept telling my mom I knew what I was doing, but I didn't and a will Yeah. And so I think that's important to keep in mind too. Yeah,

Melissa 45:02
I mean, like, I feel like it hurt being 12 diagnosis, it was like we learned it together wasn't like, you know, she was two years old like you. And she's not going to learn any of it, you know, how in the world, so it's just you, but we kind of like have been learning together. And it's just kind of like a joint effort.

Scott Benner 45:22
I guess. Can you tell me a little bit about how the podcast is helpful to you?

Melissa 45:28
Oh, my gosh, yes. First and foremost, I think it was like a mental. It just gave me some mental people like peace of mind. We know nobody. Well, besides the there's a police officer, you know, one of my husband's friends. But like, there's no kids that we know, nobody that she knows, has type one diabetes, or it has to deal with, you know, anything on the level that she's got to deal with it. We know of, you know what I mean? So and there's no parents who I can talk to or anything. So this is like, the community of people I don't know, but totally relate to, and just made me feel so much more like comforted, even though I don't know anybody, you know? Yeah. So just to hear, like parents struggle with it. And parents feeling guilty and doubting themselves. And along all the feelings I was feeling is just like made me feel so much. I don't want to say better, but just like less, beating myself up, I guess. And then just the knowledge, like when the Omnipod five episodes came out, so helpful. Listen to them. I don't even know how many times on my walk. My dog is like, lady, who is this guy? Because I would, you know, like, I don't really wear headphones on my walk. Just my phone's going in my pouch. And so he hears your voice every for an hour and a half every time we're walking. Just you want

Scott Benner 46:51
me to start telling him where to poop? Maybe we can get it all in one place. So the kids job will be.

Melissa 46:55
I would love it just right on the side of the house. All right over there. Go ahead. Yeah.

Scott Benner 47:01
Well, it will make you feel good to know this, then hold on one second. I am looking at an email that is setting up a meeting for tomorrow. And it says Hi, Scott, I hope things have been well with you. I don't want to use anybody's name. But I know you've been chatting with us about your next Omni pod series for the podcast. And things are coming together on our end. It's time to get together. We'd like to get your ideas and set up an outline for the conversation. So there's going to be more on the pod content coming next year. So yeah, I they found that very helpful, and so did a lot of people and those episodes have been downloaded a lot. So actually, those three episodes are collectively up to about 150,000 downloads.

Melissa 47:47
Oh yeah, because they're on their website. They're on the Omni pod. Like when you set up your Omnipod five. There you are.

Scott Benner 47:55
Yeah, isn't that weird? Because yeah, it's weird to me just say no.

Melissa 47:59
No, yeah. Well, I did. I did get my husband to listen to those episodes. My because my daughter went to Washington, DC. Oh my god, this was huge. She went to Washington DC with her school in June. And if you want, it's gonna probably make me sound like a nut in a bag. But we're talking like months and months of mental anguish over this. I was a ball of nerves for months leading up to this trip that she took. Because, I don't know. I was just so scared for her to go. And she killed it. She did awesome. Thanks to the Omnipod five. I mean, she ran a little higher than she would have at home but do that automated mode. Thank the Lord. So for that

Scott Benner 48:46
you just threw me off with not not in a bag? Because I'm like, is that a thing people say? So. Um, alright, so it is actually a crazy person, so a nutbag is a crazed male or female so I think you may have meant it made me sound like sound like enough back if you said that I wouldn't have paused I would just I

Melissa 49:08
am famous for screwing up like really easy to remember phrases so really probably supposed to be not back yeah,

Scott Benner 49:15
you're you're colloquially challenged? Yes. Oh, by the way. Oh my god, I'm gonna definitely name the episode colloquially challenged. But so nuts in a bag is a reference, but it's not what you meant. Yeah.

Melissa 49:32
Most people know by this. They know just know nobody mentions it. Sometimes I husband's like, oh my god, or I can't think of the word so I just like something comes out of my mouth. And usually like my husband and kids know what I meant, but they're just rolling their eyes. You just get it wrong a little bit. A little bit, actually, for whatever. Like trying to get situated for here. I was asking my son Where are your air pods? And I don't know what I said. But he poked his head out of the bathroom and said, Why is it so hard to say air pods? I have no idea what I even said.

Scott Benner 50:07
Alright, I don't know, I have somebody I'm related to who I want out here because I think people listened that would know this person. But they very frequently used words in the wrong places. And I, I love going, it's not what you meant. That's not the word you're meant. I know. I

Melissa 50:27
know what I meant. Yeah,

Scott Benner 50:28
I know what you're trying to say. That word doesn't mean that my

Melissa 50:32
husband's line he just is like, that's not what that means. You just move along. Like that. You know what I mean?

Scott Benner 50:41
That's fantastic. Anyway, there's also some dirty phrases here about nuts in a bag. I don't want to tell you about but you meant not that. Guess what I'm saying? Crazy Lady. Yeah. So she you were really nervous to send her away? Obviously, young shouldn't be by herself. But it went really well. Yeah,

Melissa 50:56
it went really, really? Well. Yeah, she had a blast. And we just did the manual mode, auto mode, this Faisal that basil, are you walking right now? Are you you know, that kind of thing? Well, and

Scott Benner 51:08
if you didn't do that, just on that trip, do you think she would have been okay, just left it in auto? Do you think it would have been fine to? Probably

Melissa 51:14
but my anxiety levels? Well, yeah, I have very hard time with the numbers on the Dexcom. And just letting things go sometimes, like, you'll probably cringe, but let's say it's 150. Let's say it's 150. And I will say to her, correct. And she's like, Oh my God, it's fine. You know, like, and then I won't know if she's going to if she corrected or not. Because to her, she would rather be 150 than correct and go low.

Scott Benner 51:44
Yeah, I wouldn't want her to go low. But I also understand what you're saying. Like if I saw if I saw a stock 150 Like, it doesn't make me cringe. Like I'm not cringing when you're thinking about it. But it did put me in my own head, I would be like, hey, this, whatever we're doing is not working right now. So you need more insulin here. We have to break this number is how I would put it. And back in the beginning. Like I won't lie to everybody. Most of back in the beginning, I would see the number and think, okay, yeah, because then there's going to be complications, and you're going to die. And it's going to be my fault. And like, you're not going to be happy. And like, I get that. The truth is as it moves on 150 for a little while. It's not the end of the world. But staring at it for hours and hours and hours is not necessary, either. So you gotta find a middle. I'm trying to make my podcast but the world's coming to an end outside. Hold on a second. What? In that give me Hold on a second. Unbelievable, Melissa, do they not know what I'm doing here? I'm making a living

Melissa 52:42
by How dare this thing? No, no, hold

Scott Benner 52:45
on. So I think this is the I don't know what this is an indication of. But there's a piece of machinery outside right now. Going down the street picking up people's like lawn scraps. And this piece of machinery is overkill to say the least I believe it could be used to knock over a house. But instead it's picking up brush so it'll be gone in a second. And I think that people in my township overspent on this thing 100,000,000% Like you know when you're like you look at your fire department and they have like this like amazing ladder truck that goes up like 200 feet and you think we don't have any buildings at all. Why

Melissa 53:24
did they buy it you're driving in this pothole, pothole.

Scott Benner 53:28
Take the ladder truck money and fill the potholes. Would you please yeah. And meanwhile, I'm watching three people watch the machine pick up the stuff and I'm thinking if they were helping, you wouldn't need a machine the size of a mountain to do this. Instead of them just all standing and staring at it while it is so loud. Can you hear it? Or no? I can a little bit. Yeah. But it's insane how loud it is. I wish I could describe to you the earthmover that is outside of my my residential home right now. Like I don't live in the middle of nowhere like Melissa, wherever you're at. I don't know. You're like God's country there. Where are you at exact not exactly, but like, right.

Melissa 54:08
We are I mean, I don't mind your Midwestern. Yeah, we're I've Michigan. Yeah, it's not. I feel like I don't hear very many people from here. Like I don't know anyone. I feel like nobody says they're from here. We don't know anybody. Like Are we the only people we can't be because it takes me. I know there are other people and I

Scott Benner 54:31
just recorded with Robin the other day. She's a an adult with type one and she lives in northern Michigan. She has like a lot of property and everything.

Melissa 54:39
Oh, you know what I do know someone I totally forgot. And I just I just told him about your podcast. And he for his son. Yeah, we went to high school together. It's a son. That's right. Well, they were diagnosed right around the same time he's a few years younger but he was on vacation and needed a something about the T slim and got it nice through the pipe. Cast I was he was like, thank you so much for telling me. I

Scott Benner 55:03
just want to give you an update, we've now used 37 gallons of diesel fuel and four people's man hours to move what looks like an amount of brush that my father would have just lit on fire and made go away. But he can't do that anymore because bad for the air.

Melissa 55:18
Is it one of the as everybody gets like hanging on to the side of it as it drives away? Oh, no,

Scott Benner 55:23
you're not imagining a large enough piece of equipment. There's a thing out there that if a war broke out, they would probably use this to help fight is is how big it is. And it is backing up and going forward and backing up. And going forward by three people are just he's now trying to pick up four branches with a machine that's meant to like knock over like concrete. And it's too delicate of an operation. And if one of them would bend over, pick the branch up and throw it. This would have been over a while ago. But instead, it's still happening. And it's such a motor like it's vibrating my chest. I know you can't the microphones doing a good job of keeping it down. But it's still like what are they? when it takes off? It's going to sound like a spaceship leaving I think I seriously don't understand what's happening. I don't have time to get involved in local politics, Melissa, but if I did, I would start right here with this.

Melissa 56:19
Like take a picture of this right here. What is this

Scott Benner 56:23
could have handled two guys in a pickup truck and instead there is an earthmover

Melissa 56:30
send my son over he can pick a kid

Scott Benner 56:32
picks up crap like a like a champ. He could definitely do this though. So anyway, all right, hold on. Oh, we're getting towards the end. So let's make sure we do everything you love me. That's important to mention. The podcast has been really helpful for you. That's cool. You're a little anxious. Do you think that's gonna get better?

Melissa 56:50
Yeah, it has gotten so much better.

Scott Benner 56:54
Good. Yeah. Good. Yeah. Yeah, it's not gonna stay like that. getting better and better, I

Melissa 56:58
think. Yeah, you know, Oh,

Scott Benner 56:59
hold on the things back. It's backing up now. Oh, good. Amazing. What is I am I'm gonna go look one more time. Hold on up your back. Okay, it looks like they're done. They've, by the way back traffic up on the street that doesn't have traffic on it. So that's how long they've been out there

Melissa 57:14
now. Oh, you can't even get by it. It's

Scott Benner 57:16
that big to drive around? I'm almost I feel like you're not listening to me this thing. The man driving is 19 feet off the ground? Oh, my God, that's hilarious. I don't I don't know. How did that happen? It's almost like they it's like when you find like a local police department and they have a SWAT team. All of a sudden you're like, what did you need a Humvee for? We got the budget like, Oh, okay. Okay, sorry. Your anxiety? I think it's something that's really obviously comes to most people in the beginning. And oh,

Melissa 57:56
yeah, I can imagine but but it should.

Scott Benner 57:59
The way I think about it as your experiences build on each other. And you get more and more confident. And you see things work more and more times like that stuff should go if it's not, you should talk to somebody but like, I'm not talking to you. I'm talking to everybody. But if but it should dissipate over time. Once you start getting some, you know, certainty, I guess.

Melissa 58:20
It's like one of those things where people say, Oh, it's it'll get better. And I'm just like, screw you know, it won't. How could this get better? Yeah, you know, there's no way. But here we are

Scott Benner 58:32
someone online the other day said something about does it make you sad to see a device on a child? And it makes me sad all the time when I see whatever they were talking about. Oh, my kid. And think

Melissa 58:42
I might have seen that. Yeah. And it was a little kid on a couch.

Scott Benner 58:45
Yeah. And it was a big thing. Like it went on for a while a lot of people got involved. I jumped in. I was like, hey, that won't bother you after a while, like, I don't know,

Melissa 58:54
sharing that exact statement. And like I scrolled right through and thought, yeah, you're right. It won't. I mean, yeah, it's sad. But also like, in my now I can't even believe I'm saying this. But yeah, it's sad. But look at what you have, like, you got all these things to help you out there. You've already got them on your kid. You got the pad and the Dexcom you know, awesome. Yeah, I

Scott Benner 59:19
think it's very reasonable.

Melissa 59:21
I can't imagine like, first of all, I can't imagine if my daughter was younger, because and I just feel like it would I would have been so much not to say so much more sad. Is that horrible to say? Because she was 12 but, like, maybe too young to like, communicate about it, you know, just like this is happening to you. You have no idea oh my gosh, this is like 20 times more awful. Whereas she was able to like we learned together like I said, you know, which I feel like we like had each other.

Scott Benner 59:50
I think I think what happens is that no matter when this occurs in your life, there are different reasons to be sad and different in different reasons to be hope. polling, there's things that you can point to, like, Here, watch. My daughter was two. So a lot of the stuff we did, she didn't really know about, like, she didn't know she had diabetes, like she's just how things were. So that is a positive way, if you juxtapose that against a 12 year old, who lived 12 years without diabetes, now suddenly having to do all these things and understands contextually, but you can flip those things around and make the arguments in reverse. You know, and so the truth is, is nobody wants diabetes, and it sucks. And there are things that are better or worse about it, depending on the age when it happens. But to judge it all against itself is it's kind of always

Melissa 1:00:38
Yeah, like, it's the weird thing where you're all like, the same in the same boat, but maybe like in the same water, but in different boats, you know, think about any way you want waving at each other like you, okay, kinda you, I

Scott Benner 1:00:52
think some of it's not within your control, like, you know, to see, like, I didn't want my daughter to have a pump, because that's like, we can't put something on her. Everybody has that thought, you know, and then once you do it, and you're like us isn't a big deal. And it really helps in a lot of other ways. So cool. And then one day, you're just accustomed to it, it's no big deal, or, you know, somebody will get online and be like, I can't believe that my XYZ expired when I was trying to, please, you'll just get used to that. It'll be part of what you do. And it won't be a big deal at one point. And you'll learn to like appreciate the fact that your life is I don't know how to say this exactly. But you got to be able to do hard things in life. And sometimes chat challenges are really like what make you I'm not saying I wouldn't give away a different I prefer a different challenge that didn't involve health. But yeah, like, come on. Yeah, yeah. It's also not up to you. So you got this thing. And then from there, you can decide to meet it head on, and let it make you grow. Or you can decide to let it run you over. Yeah, and do the other thing. And for the people in between who have actual, you know, issues that where they can't create that kind of like resistance, then you you you hope they find help and find other people to help prop them up while they while they figure out a way through it. But for most of most people, you get to decide how you react to things. So, you know, anyway, yeah,

Melissa 1:02:19
I guess as with everything, you know,

Scott Benner 1:02:21
it's up to you mostly.

Melissa 1:02:24
Give it a shot? No.

Scott Benner 1:02:26
I mean, you might as well go for it. It's better that way than the other way. I mean, if you've got a choice to make make the choice that might end up with, you know, some positive outcomes. I think,

Melissa 1:02:37
yeah, that's a work. I mean, it's easier said than done. It takes a lot of work to feel that way and think that way, I think you know, and actually do it.

Scott Benner 1:02:45
If you're a dumb boy like me, you just just be like, You got rocks in your head, you just say I'll do it. Don't worry, I'll be fine.

Melissa 1:02:51
I know I'm an over thinker. So yeah, I don't

Scott Benner 1:02:54
think about enough. I don't think about anything enough to be upset about for too long. The key to life is to just be like a boy and just go it'll be alright. And go. No, I wish and wish or not, but I'm sure there are women to think like that, too. Oh, God, is somebody gonna be upset by that? You know what I mean? Stop it. Disclaimer. There's just sometimes you can get to in your own head, I guess is the way you can think about it. Oh, for sure. Yeah. Anyway. All right, Melissa, this was terrific. I really appreciate you doing this with me. Well,

Melissa 1:03:26
thank you. Yeah, I appreciate you doing that with me too, especially since I messed it up. I think it was maybe last week. I have to admit,

Scott Benner 1:03:33
my schedule is so busy that you popped up today. And I created the file. And I was like, I already have this file. Like why do I have a file with his name on it? Now I'm like picking through my email. I'm like, Oh, this was rescheduled like days ago, and then I'm like, I'm not gonna show you gonna show. I'm like, I must have done this. How do I not remember this? What did happen the other day I forget. I'm

Melissa 1:03:57
a paper and pencil planner person. And I wrote it down for the eighth. I don't know why. That's right. I wasn't

Scott Benner 1:04:06
I texted you. I'm like, Hey, you're gonna get on this and you're like, it's on the eighth and I'm like, It's not

Melissa 1:04:10
okay, and listen to this one. So I don't even remember when I made this schedule this long time ago. Right? How many months ago and every like month I put it down in the bottom of my notes until I got to like right in August. Like I just kept putting it to the next month so I've seen this date like for months, because I just I can't forget to put that in August. Thank

Scott Benner 1:04:35
you very consistently wrote down the wrong date. That's excellent.

Melissa 1:04:38
Yes, that is my life right there. In a nutshell so prepared but so unprepared I

Scott Benner 1:04:45
wish I could ask you just general sayings that you get wrong. Do you have any I

Melissa 1:04:49
couldn't even think of one right now. I know like I was trying to like real quick think before when we were talking about it, but I don't know.

Scott Benner 1:04:56
I thought that just just from your personality. I thought she's not gonna even be But to like recant the ones that she gets wrong. No, that's great. That's fantastic. All right. Well, Melissa, I again, thank you so much for doing this. I appreciate it. Okay, thank you. Hold on one second. Okay.

Arden has been getting her diabetes supplies from us med for three years. You can as well, US med.com/juice box or call 888-721-1514. My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com. To us Med and all of the sponsors. A huge thank you to one of today's sponsors, ag one drink ag one.com/juice box, you can start your day the same way I do with a delicious drink of ag one.

If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1128 Out to Sea

Gregory's son uses Android APS.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome aboard friends, this is episode 1128 of the Juicebox Podcast.

Today I'll be speaking with Gregory he is the father of a child with type one diabetes. His son Xander was just about nine years old when this was recorded. Speaking of when this was recorded, Gregory is an engineer on a commercial class fishing vessel. So when we recorded this, he was about 100 miles off the coast of Alaska, which I thought was pretty cool. Found the podcast through his mother, and says it changed his life. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin. If you're looking for management help, check out the diabetes Pro Tip series in Episode 1000. It runs from Episode 1000 to 1025. And if you're newly diagnosed, perhaps the bowl beginning series would be a way for you to start looking the feature tab of the private Facebook group for a list or at the top of juicebox podcast.com. Or you can just search your audio app for Juicebox Podcast bold beginnings.

This show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox.

Gregory 1:46
Podcast My name is Gregory and I'm the father for type one.

Scott Benner 1:49
Gregory, we're gonna jump right in and find out you're doing this from work. Is that right? Yeah, yeah. From work. Yeah. Where do you work?

Gregory 2:00
Well, I have a merchant mariner, which means that I say a lot on ships, you know, not military ships, just regular old industrial commercial Class ships. But the one that I'm on right now is a commercial fishing vessel. We're currently about 100 miles off the coast of Alaska. And we're fishing.

Scott Benner 2:21
Is it? Do you fish with nets or cages? Or how does that work? Oh,

Gregory 2:25
no, we just have a bunch of dudes on the back deck with fishing poles and and we do the best we can. Because

Scott Benner 2:31
that can't be right. So every time I eat a shrimp, one guy bought it on a hook. He's telling me

Gregory 2:42
oh, yeah, very tiny hooks, you know, we put a whole bunch of them on a line. And you know, I'm not sure what would you use for bait for shrimp? Because usually shrimp is made in it. So when

Scott Benner 2:51
what do you do on the? What do you do on the ship? Well,

Gregory 2:55
I'm an engineer. So I don't do the fishing. And it is with nets, by the way, just joking around. So we have this this enormous net and it's kind of shaped like a funnel. And we just come along and we scoop up entire schools a ship of fish at a time. Wow. But I'm an engineer. So I just fixed the stuff. We actually have a motto in the interim here. In Latin, I don't remember the whole thing, but we keep them fishing in spite of them. Because they dislike to break stuff all the time. So it keeps me busy.

Scott Benner 3:27
Now, are you turning the wrench? are you pointing to the thing that needs to be turned?

Gregory 3:32
A little bit of both. I've been a wrench Turner for quite a number of years. But I got to the point now where I don't have to turn the wrench quite as often as I used to. I still want to It feels weird. But now, you know, training the next big mansion. I just get to stand there and look proud.

Scott Benner 3:55
Alright, so you you were gone for a second there. But we're gonna obviously we're gonna have to expect that since your Did you say? 100 miles off shore?

Gregory 4:06
Yeah, 100 miles off the coast of Alaska right now.

Scott Benner 4:10
Your internet is still amazing. So anybody else who's you can thank

Gregory 4:17
Elon Musk for that one. Oh, is

Scott Benner 4:18
this Starlink you're using? Yeah. Wow, that sounds to me, it really does sound good. It's it's incredible. I mean, considering you know, you row a boat, eight, I don't know, eight times, and leave the shore and your cell phone won't work anymore. So it's pretty crazy. Other questions about your job? So do you work just for the ship you're on right now? Or do you kind of freelance or are you with a company and you move around?

Gregory 4:44
I work just for the ship that I'm on right now. There are other aspects of the industry where you could do those are the things I've done that a bit in the past, but I prefer to just stick to one vessel. It's easier to schedule that way, you know, you can kind of count on when you're coming and going and getting familiar with one particular vessel. It's a lot easier, you know, because you don't have to start over all the time. Sure.

Scott Benner 5:09
How long are you going for when you leave?

Gregory 5:14
It fluctuates with this company. It's between two and two and a half months at a time. The company I was with prior to this, it was 35 days at a time. And then the company I was with prior to that, it was 28 days at a time.

Scott Benner 5:30
And how many times a year do you do that?

Gregory 5:34
Oh, it was many times you get them in. But when I first started out, you know, I averaged out like roughly eight, nine months out of the year I was at work, which was not fun. And now I've gotten to a point where it averages out at six months a year. So at this to two and a half months deal. I'd go out twice. And then that would be the bid for the year.

Scott Benner 5:56
How do you even find a woman let alone make a baby when that's your schedule?

Gregory 6:01
You have to be very fast.

Scott Benner 6:05
Hi, I'm Gregory. We're getting married? Yeah, I have it. I gotta go.

Gregory 6:11
I gotta go to work. I mean, you do find some time. It's not easy. They, they say if you're not on your third divorce by the time you make chief engineer, you're not doing it. Right. You know, so I've only got the one but you know,

Scott Benner 6:25
you have been divorced once?

Gregory 6:28
Oh, yeah. Divorced from the mother of my child. I

Scott Benner 6:32
see. And was it because of the job? No, no,

Gregory 6:35
actually, the job really wasn't an issue. It's just we didn't get along. Let's let's put it that way.

Scott Benner 6:41
It was fine for you to go. No, I'm just the dick. That's what I wanted you to say. so badly. Okay, so I mean sometimes but I try not to be okay, so with your first wife, you have your child who has type one. Correct. How old your

Gregory 7:00
child right now he's eight but he'll be nine in September.

Scott Benner 7:03
Are we going to use his name or no?

Gregory 7:04
We can use it okay. His name is Xander. Xander. And

Scott Benner 7:10
there's a going to be nine. How old was he when he was diagnosed?

Gregory 7:14
He had just turned six. Okay,

Scott Benner 7:16
so we're almost three years.

Gregory 7:18
Yep. Getting pretty close. Okay. Now,

Scott Benner 7:21
so you're you have the job you have plus, you're divorced from his mom. So what's that look like? When are you with him and were you together at his time of diagnosis. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily G vo Capo pen can be administered in two simple steps even by yourself and certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use Tchibo Capo pen before an emergency situation happens. Learn more about why G vo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma visit G voc glucagon.com/risk For safety information.

Gregory 8:48
I was at work at his time of diagnosis. It was a couple of days before I was due to come home. And the job that I was working at the time. I could have come home if I wanted to, you know but she persuaded me that that wasn't an issue. And there's only going to be a couple of days. And so we got on the internet like you do. And I was there, you know via zoom at all the doctor's appointments, you know, the hospital, the training session. They emailed me the paperwork and then when I got home ready to hit the ground running. But as you well know, they didn't really tell me very. So it was a rough transition. Fortunately for us, it number believed December 12. And shortly after diagnosis, we went to Christmas break. And so then I had him the entire time. And we were able to concentrate exclusively on figuring this out. And I'm trying to Google what is a Bolus and Google didn't know

Scott Benner 9:57
I wish you would have found

Gregory 9:58
a little while ago I'm so sorry. Yeah, it would have been nice. But

Scott Benner 10:04
go ahead. No, no, I'm sorry, I spoke over Nino.

Gregory 10:10
It happens, you know, there's there's a little bit of a delay, too. So I think it might happen a few times. That's

Scott Benner 10:15
okay. I'm figuring it out. I'm getting it. So you are? You are not. I'm sorry. Were you together at that time? Or were you already divorced?

Gregory 10:26
We were already divorced at that time. Okay.

Scott Benner 10:29
I'm really wondering about the feeling of being that far away. Is it just something that you're so used to? Or did the news of the diabetes make it more difficult than it normally is?

Gregory 10:40
I didn't really feel that far away at the time. So the job that I'm on now this is this is new, I've never worked Alaska before. But where I've been working in my career prior to this was the Gulf of Mexico. And I knew that I was only, you know, at maximum, a couple hours away by plane. I didn't fly home for this. But there was another emergency I had a little bit later. And, you know, after I told him, like, Hey, I gotta go, literally, the next day, I was on an airplane. Here, it's a little bit different. But being away, it's never really been easy. But, you know, this is the thing that I know how to do. So there's that. And I make enough money to where I can provide, and we can kind of do whatever we want to do. And now that I'm only working six months out of the year, on average, when I'm home, like I'm just a stay at home dad, which I'm remembering that question you asked. So the custody arrangement that how we have it written, written currently is I pick him up on the way home from the airport, and I dropped them off, on my way to the airport, I have him 100% of the time when I'm home. And she just has him while I'm at work.

Scott Benner 11:52
How does that work for him? Do you think? Does he like that?

Gregory 11:54
I think he likes it, you know, the the first year so I'll say the transitions were hard. He would cry a little bit when it's time to go to my house or hers. And you know, he missed us, but I think he's starting to kind of get used to it. I speculate he might enjoy the transition a little bit because my rules don't exactly match up to her rules. And you know, he gets to do different stuff when he's over there than he does over here. So it sounds like, you know, for the most part,

Scott Benner 12:29
it's different. I was just wondering, you know, because there's a long long stretches, how did you end up in this profession?

Gregory 12:38
Well, I was in a bar. Literally, I was I was in a bar. And I ran into these couple of guys that I knew from high school. And this was a few years out of high school at that time. And, you know, I wasn't making a whole lot of money. I was on a, a year off, quote unquote, from from college. I was complaining about the I wasn't making very good money. And one of them had this opportunity to go and do do this job in Iowa. And it was a repair work job. And so went out there and ended up talking to another friend of mine from high school who knew about maritime. So when that drug dried up, I was like, Well, how do I go on boats. And, you know, I got licensed to do what I had to do. I ended up running into a guy randomly at a mechanic shop, who told me that he knew a guy who get me hired and so I packed up my stuff. I hopped in my truck, and I drove to Louisiana and crashed on this guy's couch for like, a weekend. And by Monday morning, I had a job washing dishes. And then that turned into another job which turned into another job and eventually, here I am, you know?

Scott Benner 13:47
Then you meet a woman in that bar again a couple of years later. Is that how it goes?

Gregory 13:52
The internet? I found this one on the internet, you know? Cuz I can text pretty good at that.

Scott Benner 14:00
You come off well in texting Do you?

Gregory 14:04
Oh, yeah. Much better than in person. By the way. It's a disaster.

Scott Benner 14:08
I hope your current wife didn't hear you say this one. Does those make it feel like maybe another one? Oh, they're all gonna hear this. I'm sure that's not what he meant. I was just teasing. Okay, so Okay, so he's diagnosed, you get home eventually. He goes right to you. So is that difficult for your ex because she's not getting the information or do you guys have a pretty harmonious situation where you can talk?

Gregory 14:44
Not harmonious all the time. But for the most part, you know, I I do my best. Not saying I always succeed but I do my best. And I really can't speak for how she felt in the moment but You know, she did drop them off. One detail that I failed to mention was that my mom had driven down and was was there in the ER with my son and the ex wife. Going through all the stuff was kind of the transition, you know, she came and stayed with me over the Christmas break. And so, between the two of us, we kind of figured it out. And that's also how I came to know about the Juicebox Podcast was she found it and sent it to me. And I was like, I don't have time for any podcast. But eventually I did listen. And literally, you changed everything for me. Like, if if I hadn't listen to the podcast, I don't know where we would be in what we'd be doing. Like it was 100%, the podcast, why we've achieved any form of success at all. Oh,

Scott Benner 15:49
well, we'll talk about that. But now's the time when I'm going to say you should send me some like a crab legs or something like that. If only we could just feel good about it. By the way, because I'm just gonna wander until I ask you, do you like seafood? Or has the job made you hate it?

Gregory 16:04
I do like seafood. Which is pretty legit. And the seafood here is phenomenal. Literally, we go. So the cooks can come down. And they're just like, I want that fish. And that fish and that fish and that fish. And from the time it's caught to the time it's in front of you. It's like two hours. Oh,

Scott Benner 16:22
that sounds wonderful. I tried to explain to somebody Gregory who lives in the middle of the country, that the seafood they have is, is not really seafood. Like yeah, like no, that's, that's been frozen for a year and you're eating it now. It's terrible. And they're like, no, no, it's good. I'm like, You got to you got to go towards the water once in a while. So you know what's happening here, like go to the coast. But anyway, that alright, I was just gonna wonder if he had ruined it for you or not the whole time. But let's get back to how terrific I am you found the podcast. And then what happened then?

Gregory 16:58
Well, I just started, you know, cherry picking a little bit. I don't remember what day it was, I wish it did. I'm not great with dates. But I just started listening. And then you had just began the defining diabetes series. And so I listened to you know, what was available at that time. And then, you know, every so often, I'll go on and download six or 12 episodes and, you know, listen to him back to back. And, you know, through you have learned about a lot of stuff. Then incidentally, you know, one of the things that I do is I buy a lot of books, so I had bought sugar surfing and I had bought I think like a pancreas, but I hadn't made it quite that far down in the stack. But you know, I eventually did read both of those books. And then you know, I got the G voc hypo pen because you you know, we got my God I'm totally blanking on are the same meter that you use. Oh, the contour contour?

Scott Benner 17:52
Yeah. Hey, you know what the people, the people that evoke would like it if you said, I got G voc hypo pen. They don't like the word love for some reason. It's I don't know why they've never explained it to me properly. Interesting. If I could just get the whole world the way packable pen. Isn't it awkward?

Gregory 18:12
Yeah, it's a little clunky. Oh, Gregory, it

Scott Benner 18:15
took me months to teach myself not to put the word thought in front of it. And still I have trouble remembering. But anyway, I one day, I'm going to just have a lawyer on here to explain that. It's going to be a whole episode of why you can't say that. I'm always done by it. So So you find. So you're finding meaning to words that you didn't know before you're finding out about tools that you didn't know existed? Like that's valuable? Did you get any, like actual management ideas from the podcast? And what was your management style like prior to the podcast?

Gregory 18:45
Well, I learned about Pre-Bolus. From the podcast, they didn't tell us about that in the hospital in our little crash course. Excuse me. They did. They told us about carb counting. They didn't tell us that we could change our dosing strategies at all. They didn't tell us that we could change our dose at all, you know, so I can specifically remember being terrified. They had told me this was the day they told me about the 1020 30 rule, which I don't know if it's universal or not. But if he's in the hundreds, you should Pre-Bolus 10 minutes before if he's in the two hundreds, you should do a correction. Actually, they call it a correction dose 20 minutes before, 330 minutes before. And so I attempted to do that this is my first correction dose ever. And you know, I'm terrified. And it did the math wrong. So I gave him you know, something around four and a half units and that was not appropriate. And I didn't know what to do after that. Like they didn't tell me what to do. And so I'm like, you know, pushing juice on him and, you know, trying to keep him calm, but like I'm just, you know, like, DEF CON On or whatever the highest level is like I'm freaking out, which of course, we ended up having this crazy rebound, which I was happy to see because I didn't know if he was going to come up or not. It was it was not fun.

Scott Benner 20:10
I that time. Gregory, I have to tell you very surprisingly a moment ago, you said that in the beginning, you were making a correction dose. And it was scary and you use too much. And I almost cried. I you you brought you brought me right back to the first night. I was home from the hospital with Arden and like four in the morning and she needed insulin, her blood sugar was going up and I was like, I have to do something. And the panic that I felt like literally just came back in my chest now and that was man a long time ago. It was like 17 years ago. And while you were saying it, I felt like I was sitting on the floor holding that vial again. That's crazy. Wow. Yeah,

Gregory 20:51
I was also sitting on the floor, holding the vial and holding him and like, Dude, it was it was the worst. And I tried to be a prepared person. You know, in general. Like, I didn't have any resources I had, you know, I had no idea what I was doing. And, and you know, I'm not used to that sort of feeling. Gregor,

Scott Benner 21:11
I think if I was 28, and on and on and on Instagram a lot, I would say that I have unresolved trauma that I wasn't aware of. But I'm 52 So just give me the willies for a second. I'll be alright. Yeah. Oh my gosh. Alright, so. Alright, so you're learning. But are you? And I'm sorry. You said? She told me about the podcast, but I wasn't sure if you meant your mother or your ex?

Gregory 21:39
Oh, yeah. My mom.

Scott Benner 21:40
Okay. Did your ex find the podcast as well? Yeah, I told her about it. Did you think she listened? Probably not. Because you'd made it

Gregory 21:52
a couple of times. She may have tuned in a few times.

Scott Benner 21:55
She doesn't like me, it's okay to say.

Gregory 21:58
I just don't think she likes doing the things that I tell her to do.

Scott Benner 22:03
Or suggest I understand. Yeah, I'm married, by the way. And that same thing happens here. So if I say it, it's not a real thing. You mentioned that it was not your inclination to begin to listen, which I understand completely. But I honestly think if someone came to me and said, there's a podcast about diabetes just listened to I don't think I would listen to it. But what pushes you over the edge? Like what happens? Where you go? Well, maybe I'll try this thing. I don't I I'm not inclined to do

Gregory 22:30
well, you know, maybe desperation or, like, I'll just go into every avenue. But I had this idea in my head that podcasts were frivolous. You know, they're just, I didn't know that anything of substance could be on them. I say no, I

Scott Benner 22:48
understand. I have to be perfectly honest with you. I am a person who's been making a podcast for nine years. And I would probably think that still seriously, like why would I it's a big assumption that somebody would sit down and put real information into something like this, and you know, hope that someone finds it, etc. It's, it's a leap for me. Yeah.

Gregory 23:10
I'm glad that I made the leap. You know, and that was wrong. I'll admit, you know, there is definitely value in podcasts. And, you know, now that we're on the other side, so to speak. I mean, there's just I don't know where the idea came from. Because it means you know, TV can be good and bad. You know, there's, there's good programming. There's, there's bad programming out there. But you know, the thing itself isn't inherently evil. It's just a thing. You know,

Scott Benner 23:38
I hear Listen, I've heard a lot of bad podcasts. So I, I, I'm sorry, I just thought of one. I feel like someone should sneak into this person's house and steal their microphone. It would be it would be like a public service. And they did that anyway. Okay. Any autoimmune in the family?

Gregory 24:00
None that I know of. Which was the other thing I failed to mention. So no, type one on my, in my family are hers. I have come to learn. And actually it was from you. That preeclampsia is audio moot. auto immune isn't really and yeah, you spoke about it. You and I don't remember what episode are. But you were speaking to a woman who had preeclampsia and she had read some research paper and you had a discussion about it.

Scott Benner 24:34
Yeah, how about that? I forgot. I forgot to on the basis of these findings. We hypothesized that preeclampsia is a pregnancy induced autoimmune condition characterized by the presence of disease causing antigens in the receptor activating auto antibodies. How about that? That's great from the National Institute of Health and probably the second time in my life I've read that and don't remember the first time I read it, but that's Yeah, no kidding. And your did your exhale During the yes, the pregnancy I'm sorry. Okay.

Gregory 25:03
Yeah, she did. And her sister did. And her mom did.

Scott Benner 25:07
Wow. How about that? Yeah.

Gregory 25:11
So we didn't know is auto immune. But, you know, she just knew that it ran in her family and the child that we have together as her first and only child. And so she's like, oh, yeah, this might be a thing. And, you know, turns out that it was or. Yeah, but everything turned out fine.

Scott Benner 25:27
Oh, good. Okay. Well, that's, that's interesting. I'm glad you brought that up again. Okay. Now, in your note to me, you said that you wanted to talk about the problem of helping a child with type one diabetes mean, you don't have it yourself? That's a pretty specific thing to say. So I was wondering, what made you think that?

Gregory 25:46
Well, it's just something that, you know, for one, I find kind of interesting, but, you know, I know that it's something that you could relate to, you know, it's a thing that we both have an actually, I was listening to an episode, one of your podcasts just, like yesterday, a day before, and you're talking to, I forgot his name. But anyway, you're talking to a guy, he was an adult that got type one when he was a kid? And he, you asked him about, you know, do you think it's less valid, listening to a guy who, who doesn't have type one, you know, as a caregiver, and he's like, Oh, no, it's not an issue. And how, like, you want to understand what it's like for a person who has type one and how the perspective is different for someone as a caregiver. And what I wanted to tell you is that Dr. Jordan Peterson, in his first book, the 12 rules for life, one of the rules is to take care of yourself, as if you're someone you're responsible for. And so it's this idea that you take better care of, of your child than you would for yourself is kind of universal, so universal, that it's it's, you know, one of the things he specifically mentions?

Scott Benner 27:05
Well, I mean, it feels obvious to me that you should do that. Right. But yeah, it's, um, it gives you a just, I like my perspective on diabetes, like I asked, I think it was Mike, I asked that question, too recently. Was that a good algorithm episode? You heard that on

Gregory 27:21
maybe? Yeah, listening to the algorithm episodes a lot lately.

Scott Benner 27:26
And the reason that that feels very important to me, is because I obviously there's, I don't mean any math denigrating anybody, but I've seen a lot of content come from type ones about type one. And I've always thought, oh, their perspective is, so I'm gonna use the wrong phrase here. And then it's gonna sound like I'm being harsh, but I'm not. But they're, they're kind of up their own. A little bit, if that makes sense. Am I using that correctly? Yeah, I'll take it. And so it's their perspective is so like me centric, that I think they see what's happening to them, which, by the way, is completely legitimate, but but they, they're seeing what's happening to them, and they're feeling how they feel. And so then they have all these human emotions mixed in with it. And that gets in the way of them taking care of themselves, which would happens to me, by the way, like I said, Greg Gregory, buddy, yeah, Greg, I'm getting a toe surgery next week, it's no great shakes to tell you that it's probably not going to be a big deal. I'm going to be under for 45 minutes, my toe is going to be better when it's over. But if you heard me talking about it for the last month, you would think I'm having my brain removed and put into a dog. So and then I'm really hoping the dog can survive with my brain. And it's out because I'm not just, I'm worried about it. I think about how it's gonna hurt, what am I gonna have to do afterwards? What am I gonna have to do to care for it? How the hell am I going to take a shower, I'm out to get my foot wet for blah, blah, blah, like, you know, just online on I'm up my chest about this thing. Yeah, if you heard the doctor describe the surgery, you'd say to somebody, I don't even know that it's really surgery. They're gonna make a small incision on the guy's toe, they're gonna, like, clean out a joint and knock off a bone spur. And they're out of there in 45 minutes. Like, do they even need to put them to sleep for this? You know, and, and so anyway, when this happens in type one, they, they put out all this content, and that content can feel very scary, or a little woe is me sometimes. And it lacks the, it lacks a third party perspective. And so I've always thought that that my perspective on this was, you know, unique, obviously, but moreover, it was always a little dispassionate. And I don't mean that in like a cold way. I mean, like, when you're low when a person was not type ones low and they're in a panic, they can't sit back and you know, be philosophical about what's happening. And right i can and i thought that that was a valuable perspective. Anyway, yeah. Anyway, anybody who heard up their own estimates upset now, I didn't mean it like that. Just relax. And by the way, it's always good to tell people to relax. They love that. Yeah, it relaxed, calm down, always the way to go in interpersonal communication. You know, I'm thinking you said, You're so much better in texting, we should have like, texted this back and forth, and I could just turn the transcript into audio later, if you would,

Gregory 30:27
would you would have been legit.

Scott Benner 30:31
Like that didn't sound like it would take so much time. I will maybe I will try that one time. I'm gonna write that down. That's a great idea.

Works out text to speech interview. So I conducted an entire Air View by text. And then I translated into speech. Alright. I'm thinking or

Gregory 30:56
have an interview with like, Bart or chat DD? GDP.

Scott Benner 31:00
Whatever the GPT. Yeah. Is that a GPT? CPT? No, I don't know. Anyway, AI. Ai, ai. Meanwhile, I just found a company. I make transcripts for the podcast. But you know, this is something I never talked about that I always tell myself I should talk about. But each episode of the podcast has a transcript. Yeah, I just found that out. Yeah. And it's online, you can go listen to it. Each episode of the podcast has its own webpage on the juicebox podcast.com. And there's a transcript there. But I just found a company who is more centric to podcasting. So they're going to provide a transcript. And then each episode will have its own chat bot. And you can really ask that chatbot questions about the episode. And it works surprisingly well. Game Changer. Yeah. So I'm gonna start with the series. It's expensive. So I'm not doing the whole podcast right away. But I'm starting, I'm actually starting doing it today. After I record the Yeah, after I record the podcast, I got that symbols on my end, like I'm cooking with my left hand here. But, but after I make this podcast with you, I'm actually going to upload the bowl beginning series and get it translated into this audio and put chatbots up for it and everything. So it's part of what I'll be doing today.

Gregory 32:21
Oh, wow, that is so exciting. I can't wait to see it. When it's out.

Scott Benner 32:25
I have a lot of hope for it. And my fingers crossed, and I just sent them a lot of money last night. So it better work. I better be right about this.

Gregory 32:33
I hope so. But I could see that being incredibly useful. Especially, you know, for somebody that was newly diagnosed, and then they're trying to put it out there, learn about it. And it's, I don't know, it seemed like Google was working against me, but they have something techspace where they can search keywords, and it, you know, hopefully directs them in some kind of way to where they can get help. Oh, my God do,

Scott Benner 32:57
right. It's my only had that I'm also pushing the company to. So right now you get a bot per transcript. And I'm assuming that's why it's so damn accurate. But I said to them, I'm like, if I could just like, group together 20 transcripts, like for the whole series, and the bot would go through the series and like it would be a big deal. And I am thinking, by the way, Gregory exactly on the lines that you are, which is, you know, imagine if you could go to an app, like imagine there was a Juicebox Podcast app, and you just could say, What does Bolus mean? And you would get an an audio return and a tax return. If you wanted to go listen, you're blowing my mind. Yeah, I know. I was. So I'm sure I've been trying to explain to people how cool this is. And no one like everyone's looking through me like I don't know, it seems like a waste of money. I know. I'm like this is a thing. I already started talking to my my son's like, my son's like, I want to start making apps, like on the side to like practice my coding. I'm like, make an app for the podcast. I'm like, here's what I want. I want yeah, I want you to be able to listen in the app, I want you to be able to, I went through to be widgets for fat and protein for setting Basal insulin like that kind of stuff, like all in this one app. So anyway, I'm working on that. It's not man. It's expensive. Yeah, yeah. I need a real app. Like, what I need Gregory's to have saved the life of a child of an app developer. That's, that's what I need. Yeah. Send me a note and say, hey, I can make that out for you. Anyway, we'll see what happens.

Gregory 34:33
There's got to be one with your reach. There's gotta be one. Just one

Scott Benner 34:38
kind app developer whose kid has a better life now because of me. Come on. Where are you at? Anyway, yeah, I'm working on it. I really am. It's, I think about this podcast a lot. So in by extension, I'm thinking about the people are listening and how to how to make things better for them. And I'm trying to make it future proof too. So that it, because I'm gonna get old. Yeah, you know. So we'll say, I'm working on it. In your note, you talked about the importance of making friends with diabetes, both parents and for your child, I was wondering, what made you bring that up? Yeah.

Gregory 35:14
Well, we're still struggling with that. But, you know, like I mentioned earlier, we didn't really have anyone in the family that we could lean on. I did find out later that I had a former brother in law, who who had type one, but by that point, we were, we were already doing fairly well, but just having somebody to talk to about it, you know, not even necessarily somebody that was more advanced, although that would be nice, you know, somebody to give advice, but just somebody to talk to how difficult it is, and just how life changing and it's just, you know, I don't know, if, if my experience is unique, you know, I don't think that it was but incredibly isolating. So the positive thing was that I had my immediate family, you know, to kind of lean on in that time, and, you know, then they, you know, lean on me. And so, you know, between us, it kind of drew us closer together, but for my son, you know, like he's still the only type one in the family and so he kind of feels different, you know, yeah, alone.

Scott Benner 36:21
Yeah, yeah.

Gregory 36:22
And we've we've attempted to, you know, meet other kids or whatever. And, you know, that's nice.

Scott Benner 36:28
But it's a little weird, right? To seek out a person just because they have diabetes. And then, like, what if they don't like to say movies as you or whatever you don't like you have nothing in common with them other than diabetes that gets its? Is that what you're getting at? It's hard to find people? Yeah, yeah. I mean, the only thing I can tell you about that, is that Arden knows one person with type one diabetes. Really? Yeah, personally, and she's never met her their friends online. And the only reason she knows her I think if I'm remembering the story correctly, is the girl thought. The girl reached to Arden on Instagram, thinking she was reaching to the podcast. And that's how they met. And then they're very good friends. They just Oh, yeah, they just don't, they've never met each other in person. So how strange Yeah, it's just the weirdness. Now she's, you know, she said, like, there's kids in high school have had diabetes that she's never met before. Even though the high school wasn't that big. At college. Someone said something to her one day about, like, oh, that's an insulin pump. I have a friend of mine has diabetes. And she mentioned a person who she's like, Oh, I know that person, like tangentially. But I've never really like I'm not friendly with them. But they have type one. But she has she doesn't. It's hard. And if I've learned one thing from the podcast is how valuable it is to have other people with type one in your life. And yeah, I think that, you know, I'm not a big, this is gonna sound strange for me. I'm not a big proponent of replacing in real life with online. But yeah, in this situation, when it's such a specific ask. I can't say enough about that Facebook group, and, and the friendships that I see people building in there. And, you know, they end up meeting each other in real life. And even if they don't meet, just seeing them interact online seems to be very comforting for people. Yeah, yeah. Are you in that group?

Gregory 38:30
Yeah, I am in the group. But Incidentally, I don't really like Facebook very much either. So you're a boy. So think I have a boy. Yeah. I don't. Yeah. It once upon a time, when I was younger, he used to go on Facebook a lot. Just needless drama. And like, I don't care what you had for dinner. You know, I wasn't on there. Like, I kept it longer than I probably should have. Because, you know, you keep up with family or whatever. But I deleted it for like four years. Recently. I did turn it back on. I think it was actually to join the podcast

Scott Benner 39:10
group. I have to say the private group for the podcast is the least dramatic place on Facebook I've ever seen, which is also uncommon for diabetes groups. But yeah, but we very purposefully keep it that way. And yeah, like I saw something pop up the other day. And, you know, I think there's part of me that just believes like, sometimes on Facebook, it's drunk o'clock, and so people get a little thing. Yeah, people get a little snippy in certain times. But as soon as it starts happening, I'm like, No, look, we're not doing this gig be nice. And that's it. And I really I don't remove comments, unless you're not nice. And I know people are going to be like, Yeah, who's the arbiter of what that is? And the answer is I am. But you know, if your group yeah If people are being a jerk for no reason, or they look like they're trying to pick a fight, I tried to understand first, and then if it just seems meaningless, and and, and unkind, for no reason, then I'll remove it. And I send them a nice little note that says, I need you to be nicer, like, find a nicer way to say that or please don't say, and you'd be surprised how being direct really works. You know, like, like, instead of being snippy back with them, or whatever is people's inclination, I'm just very upfront, I'm like, we're not doing this. So and then people learn that that's not okay there. And then for the most part, that just doesn't happen. But anyway, like, I'm not trying to push you towards it. It's just, I think I've learned running a massive group online, which is another thing I didn't think I would have to do in my life, but whatever. At one point, you didn't know you're going to be on a boat fixing a hydraulic pump. But here you are. So

Gregory 40:57
this is true. Scary.

Scott Benner 40:58
I know you want to talk about transitioning, care. And I want to actually finish up the episode with that. But first, I really want to ask you, have you almost ever died? Have you ever seen anyone die? What's the scariest thing you've seen on that ship?

Gregory 41:11
So I have not almost died, for the most part is fairly safe. And the vessels that I work on are in good repair. This vessel is actually the first one that I've been on that wasn't brand new when I came onto it. So you know, that's a little daunting working on something older than not in a bad way. But I have not seen anyone die. There was on the first vessel ever worked on someone did die, but they had a heart attack. It wasn't you know, anything to do with the vessel other than you know, maybe they cook them too much fried food. But it wasn't there at the time. So Gregory, what

Scott Benner 41:48
do you do with the body? Well, we

Gregory 41:50
were at the dock at the time. Oh, okay. So, yeah. So they like they were just going to leave, and they were going to wake him up, he was one of the office personnel. And, you know, he didn't wake up.

Scott Benner 42:03
I was in my imagination is you're out in the ocean, you've got the body. Now, you need to keep it cold. So you wrap it in plastic and then drag it behind the boat. That was my idea.

Gregory 42:14
Well, on this vessel, we have a enormous freezer. So I think that's probably the route. Wow,

Scott Benner 42:19
isn't that crazy? But nobody thinks that when they take a job one day, I might be in the freezer. Where is it is it as dangerous as television makes it seem the job itself of

Gregory 42:31
Alaskan fish. So I don't work in a crab boat. So like, it's not like Deadliest Catch, you know, not to get on a soapbox about Alaskan fishing. But it's, it's very different than the the other aspects of the industry that I'm accustomed to. And dangerous would be the word that I would use. But I mean, it's not like, we're losing guys left and right or anything like that. It's just, there's, there's, it's a weird situation, I don't fully understand it. But in the rest of the world, there's a lot of safety laws and regulations that apply one of them. And there's, they wrote entire books full of safety regulations. And they're written in writing. Not literally, but because they're written in blood, you know, like these laws get passed because somebody died. One of them. And, you know, I'm going to try not to get on a huge soapbox about this, but one of them is called solace. And it actually started because of the Titanic. So it stands for safety of life at sea. And it's just laws saying, you know, there have have to be enough lifeboats for everybody. There has to be enough flotation devices for everybody. There has to be, you know, some sort of beacon that if, you know, the vessel we're on, like, we could potentially locate the survivors, you know, and, you know, I'm doing huge broad strokes on this, but it's just, you know, it seems like common sense stuff, but, you know, without writing it down, then people aren't going to do it and out that Alaskan fishing doesn't apply. Because those regulations, we

Scott Benner 44:12
use a different book in Alaska.

Gregory 44:16
Yeah, yes. It's really weird. You know, so like, I come from, you know, this very professional world where, I mean, almost everything that you're required to do other than, you know, incidental breakdowns is is written. I mean, you can look it up in here. It's just like the Wild West. Oh, yeah, we're fishing. It doesn't matter. For catching fish. It's like, Oh, my goodness.

Scott Benner 44:41
Is it a is it a good paying job for the people running the lines and throwing the nets and stuff? It? Yeah,

Gregory 44:47
it can't be a good paying job. For sure.

Scott Benner 44:49
Nice. Yeah, I mean, I would imagine you have to pay me a reasonable amount to do something like that. Is it cold by the way, like, are you? Is it cold there? I'm assuming Yes, but

Gregory 45:02
yeah, so I am reading about this record heatwave that's hitting the rest of the country, but it's 56 degrees outside right now.

Scott Benner 45:11
Wow. It won't stop raining here. I mean, it's rained more this summer on the East Coast, then. I don't know 20 summers of my life combined, it feels like it's just not I wake up every day, and it's been raining overnight. While you and I were talking for the first 20 minutes, I thought there was a freight train outside for a while. I just have a good microphone, so you're not going to hear it, but it was insane. just won't stop. Anyway. Okay, so the last thing you asked about is transitioning care. So I'm wondering what, you know, what is it you're seeing and what is it you're trying to get to? I don't remember. Your were like at the end, I'd really like to ask you some questions about transitioning care, like from, you know, as he gets older, but that's okay. If you don't, Oh,

Gregory 46:04
yeah. Okay. Yes. Okay. Now, I know, I thought you're talking. I wrote this a year ago. So I hardly remember the guy who wrote that

Scott Benner 46:13
this is my fault, Gregory. Because the recordings I'm doing right now, were scheduled. as far out as I've ever scheduled a recording in my life. I made the mistake of like, I opened up July forward, like, in I forget, like September, or something like that. So like I'm recording with people now who are saying a lot. I can't believe I remember to do this. But so now I've I've shortened the window. I've been putting people off who are like I want to get on the schedule. I'm like, now you got to wait till it gets closer to when I can actually do it. But anyway, is that something that? I mean, is that makes sense? Yeah. It's been a thing, I guess, what's your son's level of proficiency? Like, how does he do on his own?

Gregory 46:59
He does very well now. Well, you know, when I first signed up for this, I was just starting to try to, you know, give him a couple little response. A lot better to where he can pretty much do it. He's not the best at counting his own carbs. But he can read the label and put it in there. He's not the best about Pre-Bolus thing. He says that he just doesn't like doing it. Well, you have.

Scott Benner 47:28
He doesn't like doing it. Tell them none of us like, yeah, give it a little. Gregory, you're breaking up a little bit now that I think the ship might be underwater. Ah, sorry. Yeah, it's the first time it's Listen, we've been at this 50 minutes. This is the first time it's been like any kind of a real issue. But you said you started to give him some responsibility. Yeah, he doesn't like the Pre-Bolus. But he's doing well with label reading stuff like that. I sit down, tell him that none of us like to Pre-Bolus I don't think that'll make them feel any better. But But yeah, I mean, so common stuff. Honestly. A nine year old on almost nine year old has had diabetes for three years. If they're reading labels, and can understand how to count carbs, and understand that Pre-Bolus thing is important, even though they can't accomplish it. I think you're right about where I would expect you to be.

Gregory 48:25
Oh, yeah, I'm happy with where we are. But when I wrote that thing I was, I was terrified to ever let him do it. You know, like, it's just like, how do I ever let go? And like, let him do this, knowing he's not going to do like what I've been doing, you know, because I have, by that point, years of experience. So you know, the question was like, how, like, how did you let go, but then I did it. That's so bad. It's

Scott Benner 48:52
one of those things where if you're in that situation that you were in, you would think, Scott, I need a five episode series on transfer care how to let go how to blah, blah. And the truth is, they get older, you teach them stuff, they learn it, and then life goes on. And that's how it is. And it worked. And it just happened. Yeah, you're not. There's there's this idea that I think, really plagues younger parents, or parents of younger people. And that idea is that all of their decisions are somehow mapping out another person's life. And while that is true ish, it's not as specific as you hope it is, when you're doing it. It's not like I'll say this now so that they do that. All the stuff that happens it when you if you reverse trace it back to how it worked out. It's never the way you thought, like you never get where you're going on purpose. There's like simple consistencies. You know, be consistent, be available. You know, offer love like these basic ideas. about parenting. They're the ones you need, like the specifics. Like you're not a puppet master. You know what I mean? And I think that people who try to do stuff like that end up really just manipulating people. And and I don't know that you can manipulate people into doing the right thing. I mean, if you could, the world might be a better place. And I just doesn't seem like you can do that. So yeah, my answer is, also my answer is some of your kids are going to suck at this when they get older. Yeah, and I don't know that that's anybody's fault, either. But certainly, if you don't do the things, which to me are just, I hate using a therapy words, but like, you model good behaviors, and you stay consistent. And that's how you teach your kids to do stuff. It's, I mean, it's not really that hard or confusing. But I do know why you were scared about it, because I was really scared about it, too, for a long time. Yeah. But I had this podcast and people were asking me, like, the very, a very common question for people to ask me is, oh, yeah, well, you're good at it. But how are you going to teach that to her? And for years, I would answer, repetition. We're gonna do it over and over again, we're going to talk about it, we're going to, you know, just set this as an expectation. And I think she'll pick it up. And people would like, a lot of people would be like, Yeah, well, good luck. Let's see that happen. I actually, the first time I spoke in public, Gregory about diabetes, I'm never going to forget this. I was up on stage, given my little chit chat. And there was a another person in the room watching me from the back. So other people would diabetes, like to sit in my talks and scowl at me while I'm talking. Okay, it's a lot of fun. Like, and I don't mean, just people with diabetes, I mean, like people who think of themselves as people who talk at those things, because I would show up at them and talk much differently than everybody else was. Right. And I would talk about like, look, here's some standard things you can do that will make your blood sugar's more stable, and your agencies lower, and you can do these things. And they'd sit in the back and go, Oh, this isn't right. And I've had diabetes for 30 years, and blah, blah, blah, these are some of these people, like believe in brittle diabetes still, and stuff like that. And so, so I remember this person who was as popular in the diabetes space online as a person could be. And I got done speaking, and I was just trying to get to a glass of water coming off stage, like I was thirsty. And they cut me down as I was walking, and like, not quite finger, my chest, but pretty close. I have a question. And I was like, alright, so I was like, Can we answer this question over by the table water, but whatever. And this is all well and good. But I grew up with diabetes, and it's not that easy to be taught, and blah, blah, blah. And what I realized was, this person was angry that they didn't have the experience I was describing. And their life was harder because of it. And I felt I felt like very compassionate towards them while they were talking. Because they were mad at me. But I realized they were mad. Maybe their own mom, or right life or whatever, yeah, whatever it was something, and that's not going to work and you're giving these people hope that their kids are going to be okay. And they're not going to be and I'm like, Oh, I think you're wrong about that. But yeah, you know, thanks for coming. And I won't be at your talk later.

Gregory 53:40
Yeah, I suppose that comes with the territory has been some. I mean, it's, it feels weird to say groundbreaking, right? But like, just changing the status quo. Right? in a better way. You know,

Scott Benner 53:53
it's weird. All I really did. Like, in the beginning of all this, all I'm all I can take credit for is that I said the things out loud that other people wouldn't say out loud. That's all. That's all I did. Plenty of people know how to Pre-Bolus their meals. And they do it for themselves back then. And if you ask them, Hey, should I take my insulin a certain amount of time before I eat? They would they would not answer because they think, Well, I don't want you to take your insulin and then get low, and then that'll be my fault for bringing it up. Right. I looked at that same scenario. And I said, it's unconscionable to know these things and not tell somebody else about them, and let them struggle for their whole life. So I didn't make up Pre-Bolus thing. But I very well may have been one of the first people who was willing to say it out loud, consistently. And yeah, that's pretty much it. So I mean, look how silly that is. You listen, you Pre-Bolus your meals. Great. Once he goes down a point. Yeah, no more maybe. But then you'll start seeing how insulin works, and you'll start making better decisions about insulin and before you know it, you'll have more stability all over the 24 hour period that you're living every day, and on and on and on. And that's how you learn, you learn by having the tools like, there were these tools for diabetes, they were locked in a bag, nobody would let you have them. And so you're beaten out of now you're beaten on a nail with your wrist trying to get it to go in and, you know, doesn't work that way. So you give up, because you don't want a bloody wrist. It's not that is honestly, like, I'm happy to take credit for how good the podcast is, and how much it helps people on stuff. But I didn't say anything crazy. You know, so I just a lot of people just weren't willing to talk. And honestly, I'm not mad at them. But maybe I am a little, like you had a platform like for the last 15 years, people have had different platforms, blogs, they've had speaking engagements. You know, Greg, you've got me upset now. I apologize for that. But sorry, I was online, I get up in arms, too. I was online yesterday. And this big organization was making a big deal about research that oh my gosh, like, we've got to do something, it's 2023, we've got to do something. Research shows that most people can't achieve a seven a one say, what are we going to do? And I thought, Who is most people? Research tells them that most people with type one diabetes, or have an A one C of over seven? We don't know. And they will wring their hands about that. And they will raise money off of that. And they will spend money and they will do research and they'll piss the next 10 years away off of that. And the answer is give him a free podcast or he wants to go in the sixes. Yeah, but nobody's gonna say that out loud. i It's my job. And everyone's job listening to share it with people, because those people who are actually who could actually share in a minute, with every doctor on the planet, they're not going to do that. They're just going to sit around going Woe is me. diabetes is hard. People don't do well, what are we going to do? How are we going to help them? That's unknowable? I mean, I guess that's just diabetes. diabetes, right? Yeah. And it's not, it's, it's the way you talk about it. And if you don't, and if that person does know, and isn't sharing, then I am mad at them. And if they don't know, and they're doing this, then it's just upsetting that this is how the world works, where new people come into a space over and over again, find the same old problem and leave before they fix it. And then the next person comes in and thinks they've discovered something amazing. You know? I don't know. Anyway, it's bureaucracy. And I don't know.

Gregory 57:43
It's, it's a bit of just deciding people as a whole. And you know, not to bring up the same person twice. But Jordan, Dr. Jordan Peterson talks about this. Some people get a lot of social currency out of pity or feeling sorry for them, or, you know, oh, what was me? And believe it or not, it actually makes them happy to talk about how hard they habit. And I'm not saying that, you know, all these people are doing that. But it's surprisingly common, and it's more common today than it was 20 years ago.

Scott Benner 58:11
Yeah. Well, in the end, there's a very common business saying, don't bring me problems. Bring me solutions. Yeah, it should be Yeah. And most people are, they're so great at telling you what's wrong. But they don't, they don't do anything about how to fix it. It's just always this is what's wrong, this is what's wrong. I'll go tell everybody, this is what's wrong. They'll agree with me. And then we'll be in this kinship of complaining or whatever. And we'll all we'll all feel better, because it's happening to you. And it's happening to me, and therefore, I mean, listen, no lie. Like, I used to say on the podcast all the time, like, it's nice to know, because this is what I used to think about blogging, like people blogged about diabetes. And they, they were able to share experiences and other people could see, oh, other people are going through this too, which by the way, is very comforting, and it's valuable. But what I would expand on normally is it's nice to know that you're not the only one up at 2am trying to stop a low blood sugar. But wouldn't it be better if your blood sugar didn't get low at 2am? And why don't we talk about that instead? Yeah, I'm not familiar with the doctor. You're you're saying but like, those two things make a lot of sense to me that you brought up so far. Yeah, just you know, do do something. Stop complaining. Just do something. I don't know. I'm very upset. Now. Gregory. We got to stop. I'm sorry. I

Gregory 59:39
got you there. No, I

Scott Benner 59:40
don't know what you did. I just wanted Fried crab legs and now none of that's gonna happen. I have one question. I'm in a bar. I've got Alaskan King and Dungeness which should I go? They're all the same. Really? Yeah. Just crab me well,

Gregory 59:59
It's the same crap.

Scott Benner 1:00:01
Wait, what are you saying? A Dungeness crab and an Alaskan King Crab are not the same crab? No,

Gregory 1:00:07
I thought they were the same, I don't believe are actually King. I think Alaskan King Crab is actually several different breeds of crab. And I'm just kidding.

Scott Benner 1:00:18
But you better stick the motors. Yeah, we don't want you involved in the seafood too much.

Gregory 1:00:22
I'm not the fisherman. I just

Scott Benner 1:00:26
Oh my god, I have to stop myself from calling this episode The Gordon's fishermen, which I won't do, but

Gregory 1:00:33
I don't identify as a fisherman. I'm a an engineer.

Scott Benner 1:00:37
No, had you gotten the crap? A little better. I don't know what I would have done. But yeah, so All right. Well, then we all are just picturing Quint and the steam coming off the motor and you down there banging on it trying to get away from the sharp by the way sharks. Are they as scary as I think they are? I've only

Gregory 1:00:54
actually ever seen one in the career. And by the time I came up on deck, they'd already been up pull the teeth out. It was pretty beat up.

Scott Benner 1:01:03
Oh, they caught it by mistake or on purpose. Yeah. And

Gregory 1:01:07
it caught it by mistake. It just just got stuck in there. But it was pretty big. You know, easily eight feet long.

Scott Benner 1:01:13
Let's get the hell out of me. Yeah. How old? Are you? 36. Yeah, see, there's a small group of us in our 50s Whose parents took us to see Jaws when we were like five or six years old. Well, I saw it. Yeah. Do you see what your five because I was pretty young. Yeah, there used to be this little creek that ran behind the apartment I grew up in. And I had a reoccurring dream that that shark would stand up on its feet walk out of that creek and come and kill my family. So that was a lot of fun.

Gregory 1:01:47
I saw thing believe is a documentary but I don't know. But they've directly attributed that movie with the fact that Great White Sharks are now endangered. Like people hunted them. Because like, I'm not gonna get caught by jaws. And now they're a protected species.

Scott Benner 1:02:07
Well, Gregory, that makes a lot of sense. Because what you don't know about me is in my free time I I actually am hunting Godzilla. So for a very, very similar reason. I saw that movie and I was like, we've got to do something about this. So I've been after it. Really? It's an issue. Yeah, if I wasn't making the podcast I think I'd have him by now. But it just takes up a lot of my time so I'm not able to. Alright, that

Gregory 1:02:32
in Lake Placid, you know people going after the Gators, really?

Scott Benner 1:02:36
Because now know what a bad movie. Oh my god, you know, a lot of bad movies. Good for you.

Gregory 1:02:45
All right, I have a bit of free time on the boat to watch movies and read books. How do you exercise on the boat? Well, different vessels have different stuff. But for the most part, we do have exercise equipment. I prefer to use kettlebells because they're small and you can carry him around and not so bad. But the vest was on prior to this had a full rogue fitness set, you know, squat rack benchpress you know, had the the whole apparatus we had our whole gym setup was

Scott Benner 1:03:13
nice. How big is it? How long from is it stem to stern? Am I saying that? Right? Yeah, we can do it then. Yeah. How? How long is the ship like how many they measure the my theater.

Gregory 1:03:24
They do measure it and feet. So the one that I'm on now is 244. The vessels on prior to this was an articulated tug and barge, which is like a tug and barge unit but they're married. They never really come apart. That one the tub was 140. But the barge was at least 650. And then the vessel was on prior to that was around 280 feet.

Scott Benner 1:03:47
240 is like 80 yards. It's like a football field. Now that can't be right. That's not right. 244 feet equals 81 yards. Am I getting that wrong?

Gregory 1:03:56
No, you're right, but maybe you're wrong. Doesn't seem like it's that big. I like you know, really, as long as the football field is not as wide. It feels small to me. How

Scott Benner 1:04:06
long does it take to walk from one end to the other?

Gregory 1:04:08
A couple of minutes.

Scott Benner 1:04:10
Okay. All right. I think you're insane for getting on the water in something you can't escape from immediately. But that's just how I grew up in my mind. So I don't understand people get on boats at all if I'm being 100% Honest.

Gregory 1:04:23
Not even a job like any other spot so bad. Yeah,

Scott Benner 1:04:26
even a lake you couldn't get me on a 12 foot pleasure cruise. Like for I grew up with the Gilligan's Island. I don't want to have the coconuts.

Gregory 1:04:35
Coconut is delicious. You'll love it. Yeah, for

Scott Benner 1:04:37
the first day. And then what? And what? And I you know what I mean? Like the old man was rich and he wanted everybody to take care of him. I can't be involved in all that Gregory. I tried to do this with ours and the other day. I said, God, no. I tried to get her to recollect that she knew anything about Gilligan's Island, which she absolutely does not. And I said just tell me how long was the tour? And she goes what I'm liking Gilligan's Island. And then I'm like, the song I'm singing the song. And she's like, I don't know what you're talking about. And I'm like, Ah, like they say the length of the tour twice in the in the in the opening. And she's she's like, I don't know what you're talking about. I was like, ah, nevermind, I got angry. I was like, what was a three hour tour?

Gregory 1:05:19
I walked in those three hours. Everybody knows. Exactly.

Scott Benner 1:05:24
I was so upset. She didn't know. Her friend is over. There's like studying, it's summertime like Arden's making clothing and her friends studying for something. And and I just looked at both of them was like You miserable little kids. Like just watch Gilligan's Island one time, like, I don't know how long I'd make it through an episode. If I tried to watch it now, probably about eight minutes before I was like, Oh, what am I doing? But anyway, Gregory was this Gilligan's Island. Oh, okay.

Gregory 1:05:52
All right, it cut out for a second. So I lost the bed.

Scott Benner 1:05:55
That's okay. Is there anything we haven't talked about that we should have? I'm going to wrap up.

Gregory 1:06:00
There's a couple of things. Bring it up. So you know, just something that I wanted to mention is that there there is another loop out there. And that's not an iPhone is called Android APs. And that's what we use. You had talked about your looping with with Arden. And, you know, I looked up Lupe, and it's for iPhone only. It was like, Oh, I guess I don't get to do that. That sucks. But then I had an experience, you know, not to make a short story long, but I was working a job. And I end up having to quit that job. Because you know, my son had an emergency I had to come home. And which, you know, wasn't great. But I left, you know, I got another job. There's plenty of jobs out there. So that's fine. And then I was like, Well, you know, I just can never go anywhere else. I just have to stay, you know, at this particular job that I had at the time. But then I found out that Android APS exists. I don't know how I found it. But I did find it. And so I went in and built the app and made a loop and it changed everything. You know, like we thought we were doing fairly well. And we were staying consistently consistency agencies in the sixes. And we got down to like the high fives as soon as we get onto the, the algorithm. So just the Android app is called Android APS for everybody out there.

Scott Benner 1:07:18
And it is extensively talked about in episode 924. Called APS walkie.

Gregory 1:07:25
Yeah, I listen to that one. Yeah. Which I got to look up that guy's blog, because what he's doing is amazing. Like, he doesn't Pre-Bolus He just how did you do that? That's amazing. You just put in your carbs. And it sounds like wizardry, to me.

Scott Benner 1:07:39
There's that and there is the one, what episode was it, where a guy was talking about how he thinks location services, and some other things are going to revolutionize how people Bolus one day. Meaning that an AI like meaning that you could go to Pizza Hut on like Fifth Avenue and Seventh Street, and you would Bolus for it and have an experience and a need for insulin and then go to a different pizza place maybe a different time have a different experience. And that the algorithm could remember the two and that he believes one day you'll go and say I'm having pizza. And you know, it will remember which pizza place you're at by your location services and then adjust your insulin based on your location and past experiences. And he was talking about it like he's like that's just very doable. And I'm like Alright man, like get to work you know what I mean? Like if you get going I that was I can't believe I can't remember what episode that was because that would fascinated me.

Gregory 1:08:51
Yeah, that's that's scares me. Sounds terrible. Like, like, you know, all my big brother, you know, government's watching alarms going off? Like no, don't do that. They're

Scott Benner 1:09:03
not watching you. They don't care about you. Where is that? I can't find it. Um, you know what the one of the problems is? I have so many episodes that. Yeah, when I searched my own website, I'm like, Oh, it could be any number of 20 of those. But yeah, yeah, anyway, like I don't know if that'll ever happen or not. But when he was talking about it, I was really like wow, that's really crazy. Like that idea of like, me forget even location like imagine if you told it. You know, I'm at the pizza place up the street from my house. And it knew you're going to eat two slices of pizza from there because that's about what you usually do and it's X amount of insulin and you get a rise at this time and blah blah blah but that that is literally different at a different place eating the same food. Yeah, I mean, I don't know how again like that's beyond my paygrade but that anybody even thought about that was amazing. And back to your APS Wilkie that he He's got his loop set up. So he's not really announcing meals ahead of time. Or even or even putting in insulin right? His his algorithm is set up in a way that when his blood sugar starts to go up, it like stops it.

Gregory 1:10:13
Yeah, yeah. around that, right. Unbelievable. Yeah, yeah, that's what I heard. Yeah.

Scott Benner 1:10:18
That's crazy stuff. So anyway, that's hopefully where the future is going. I hope so. Yeah. It'd be lovely. What else? What else? Did I not let you talk about?

Gregory 1:10:28
I was I was so stuck on the Android APS thing. I just wanted everybody to know.

Scott Benner 1:10:31
Yeah. Oh, it's excellent. Yeah, if you have Android, check out Android APs. If you wanna check out loop, you know, there are a lot of DIY options out there right now. And they're aggressively good artists using loop three right now. And many is terrific. So all this stuff is terrific. It's, it's all in its infancy. And it should be very exciting for people who, who have type one diabetes or loved somebody who does, there's work being done right now about getting pumps and algorithms on people with type two diabetes, these injectable semaglutide drugs. GLP ones are crazy effective. I know type twos using it, who's a one sees are coming down. I'm on a GLP. One. I've lost 27 pounds in 16 weeks. I don't even have diabetes. And it works. For me. I'm using Wiko V, which is specifically for weight loss. Like this. Yeah. Seems like the beginning of something here. So

Gregory 1:11:34
I hope so. And you know, it feels like, you know, this is 2023 There should be more development. But I'm just glad that it's being developed now. And you know, it just I hope there comes a day where there's more open and free information out there, you know, and I'm very glad that you're putting it out there. And that's, that's wonderful. But there really should be like a pamphlet at the doctor's office, like, hey, you know, we're not condoning this, but there's a podcast you can listen to. And here's a list of books, you know, that people get good results out of, and blah, blah, blah, you know, if not offering a class like, Hey, did you know Pre-Bolus was a thing? Like, do you know what a Bolus is? Yeah, like before you walk out of there. Like it's just,

Scott Benner 1:12:16
it just don't? It does seem like there's a better way it Yeah, it does seem like there's a better way to do this, doesn't it? Right. And it's so basic. Yeah. No, no,

Gregory 1:12:25
like, now that we're doing it. It's like, it's, it's not hard at all.

Scott Benner 1:12:30
And I hear in your voice too. It's upsetting, right? If you don't, if you don't find a podcast, it's a ridiculous thing. Forget, it's my podcast for a second. If you don't find a podcast, your kids a one sees what the sevens or the eights you don't know what you're doing. You're scared all the time. He's getting high, he's getting low, it really changes the course of his and your life. And for the love of a little bit of information, like a little bit of how to and a little bit of understanding. And everyone knows it and doesn't do anything about it. Or they don't know that those are the two levels of I mean, you get you get three different doctors, you get the one that knows there's plenty of doctors to tell people about the podcast, like but you either get one that knows, and they share it with you, you get one that doesn't know. And so you're just led to believe this is it? Or you get the ones that No, and don't tell people, they don't want to be the reason you have a low blood sugar. So they'd rather you be high your whole life and have a different problem later than be like, Oh, I told them to Pre-Bolus and they got low. And now they're mad at me. And yeah, I mean, it's it's I don't know, you got to have a little more if you're going to be in this line of work, you should maybe have a little more balls. You know what I mean? Right, that's all. All right, you know, just give medical advice. Yeah. So Gregory, what's the rest of the day? Like you're off your shifts done? Right? Yeah, I'm done now. So what do you do for the rest of the

Gregory 1:13:55
eye might read for a little bit, and then just go to sleep and do it all over again? Tomorrow? Gotcha.

Scott Benner 1:13:59
Does the time go by quickly the two and a half months? Or is it drag?

Gregory 1:14:05
Some days are quicker than others, you know, tends to drag a bit. Certainly my first day was a whole lot longer in my last day. I'll promise you that. But you know, you keep busy, heavy little projects. And before you know what the clock spins, and it's it's time for you to be done. You know, and then of course, there's those days where everything goes wrong all at once. And it just doesn't feel like there's enough hours in the day to make it happen. But you do.

Scott Benner 1:14:30
That's it, man. Well, I appreciate it. I I'm a big fan of seafood. And so thank you. I've had a problem. I really

Gregory 1:14:41
have nothing to do with that part. I just keep them keep them moving. Oh,

Scott Benner 1:14:43
it sounds like if the boat didn't move, they wouldn't be catching the food. So it sounds pretty important. There'd be less. Right? Because there'd be people banging on things with hammers going Why won't it work?

Gregory 1:14:56
Yeah, or bloodying their hands on nails and being like,

Scott Benner 1:14:58
I was told this Just the way I was told this was the tool I Can't Believe It's Not. I appreciate you bringing stuff back around at the end Gregor, that was very nice. If you hold on for one second, I just need to talk to you before we think about tick tock.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox you spell that GVOKEGL You see ag o n.com. Forward slash juicebox.

The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com.

If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#1127 Bare Necessities

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

+ Click for EPISODE TRANSCRIPT

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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