#886 Yes Chef
Paul is an executive chef whose child has type 1 diabetes. We talk about Omnipod 5, clinical trials and raising a little one with T1D.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, welcome to episode 886 of the Juicebox Podcast.
Today I'll be speaking with Paul. He is the father of a young child with type one diabetes. Paul is an executive chef. His child has been on Omnipod, five done clinical trials. And we talk about all that plus what it's like to be married and raising a child with type one diabetes. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Are you a US resident who has type one or a US resident who is the caregiver of someone with type one? Oh, if you are please go to T one D exchange.org. Forward slash juicebox. and complete the survey completing the survey helps type one diabetes research to move forward. It supports the Juicebox Podcast and it's just a nice thing to do. Plus, it doesn't take very much time. And you can do it from wherever you're sitting right now. T one D exchange.org forward slash juicebox.
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. Podcast is also sponsored by Dexcom, makers of the Dexcom G six and G seven continuous glucose monitoring systems. You can learn more about the G six and the G seven and get started@dexcom.com forward slash juice box. See your blood sugar, the number, the speed and the direction all in one place on your smartphone or on your Dexcom receiver dexcom.com forward slash Juicebox Podcast is also sponsored today, by the contour next gen blood glucose meter, check out the contour next gen the Contour Next One and their entire line of blood glucose meters at contour next one.com forward slash juicebox get yourself an easy to handle easy to use an incredibly accurate meter, get a contour.
Paul 2:40
interested in sharing our story and our journey. So far, it's been interesting, I kind of got to participate some trials and Omnipod five now and we were on the tandem for you know, then two year old. So it's been a whirlwind and up and down. And we have some interesting interesting stuff to share and love to hear some of your feedback and what you think of the situation and also talk about you know, the kind of the strain and pressure that being a caregiver puts on on marriage and being in clinical trials and being a professional corporate executive chef, and my son eats five things. And it's a lot to talk about and a lot to share. So hopefully it'll be some good content for other listeners, other parents and caregivers and other T one DS
Scott Benner 3:32
Oh, I'm certain it will be. Why don't we start off by you introducing yourself any way that you want to be known?
Paul 3:39
Sure. My name is Paul. 46 years old. I have a three year old type one diabetic son named Justin. married to my wife Margarita. And we've been married since 2007. And Justin was diagnosed at 18 months, and he is now a little over three, three in May.
Scott Benner 4:00
Oh, wow. Okay, so Justin's had diabetes about as long as he didn't have it.
Paul 4:05
We just passed the halfway mark. So he has now been living with diabetes longer than without. Gotcha.
Scott Benner 4:11
And you've been married? Hold on. 16 1516 years?
Paul 4:16
Yes. Since July of 2007.
Scott Benner 4:19
Wow. Today is my 26th anniversary.
Paul 4:21
Wow. Congratulations. That's uh, you don't hear that too. So much nowadays. Do you not?
Scott Benner 4:27
I don't know. You don't know. All I don't talk to anybody. I don't know. I don't hear anything from anyone. I make this podcast and I sleep. So. Well. Well, thank you very much. I appreciate I just she hasn't opened them yet. But my wife has told me this story. Uh, probably a dozen times since I've known her and we've known each other. My gosh, since probably, well, we knew each other longer than we were dating. And so I don't know we've been married. For 26 years, I think I knew her when she was 16 and 17. Like, just like I, like, you know, to say like she walked past me and I recognized her. Sure, I think I started bugging her when she was 19. So, anyway, she's 48 now. And she's told me a handful a dozen times in her life, about getting these diamond studded earrings as a child. I don't know if it was wrapped around her Catholicism or if it was a gift or something. But she, um, I guess she took them out at some point. And I don't know why people do things like this, but left them by the sink or the windowsill near a sink or something. And adios. They're just gone. Yeah. So I don't know why it never occurred to me over the years. I've always felt so bad for that little girl. You don't I mean, like, I always wished I could have like swept in and been like, here. Here's two more earrings. It's fine. Don't tell anybody, you know. So I got my wife a pair of about nice diamond stud earrings for our anniversary today. They're downstairs on the table. And I had no better late than never Scott. Well, I wasn't there the day it happened. I just don't know, over the years. But I do know, Paul, over the years. In the beginning, I was like, I can't afford this, you know? Sure. And then today, I was like I could, you know, earlier this week, I said to art and I was like, come with me and help me pick out earrings for mom. So we did that and acted fancy in a jewelry store for a little while and then got right out of there because we didn't feel too fancy. But yep. But it's nice to know that 26 years feels like a long time. I have to admit it's it's different. Like, as everything is what you expect, and what you picture and what you imagine when you're younger. It's never what happens when you're older. And I don't mean like successes and failures and things like that. Just I think just what the union means is different than what you think it is when you're like 25, you know?
Paul 7:01
Yeah, I completely agree. And that also, it's also different. Being husband and wife and then being mommy and daddy as well. That's a change that no one really describes to you very well.
Scott Benner 7:17
Yeah, no, no, my, my son's going through a tough time right now, like transitioning out of college. And it's, it's he sort of I don't know, he's been kind of private about it, I guess. And it's, I don't know, Paul, my only job in the world feels like taking care of people. And then, you know, and I do that verbally. And so when that doesn't happen, then I get I'm the least anxious person in the world. And right now today. I'm is like twisted in a knot as I've been. I don't know, since Arden was diagnosed? Well, yeah, just because I can't I can't help the way I want to help, or the way I want to help. It's not helping or whatever. I don't know. But those are not things that you have to deal with if you don't have kids.
Paul 8:05
Yeah, I can't You can't look back and tell like a 19 year old, you that one day you're going to be faced with, you know, X. y&z just doesn't doesn't relate and you don't comprehend at that age. But, you know, just it's part of adulting in parenting, I guess.
Scott Benner 8:22
Everything's on the job training.
Paul 8:25
100% Yeah. With diabetes, diabetes, as well. It's a It's all real world experience. You can, you can only get lead from do not die information from your Endo, for so long before you have to start figuring stuff out yourself and acting in the moment. So this it pertains to a lot of different parts of life.
Scott Benner 8:47
Oh, I think so. What is there a something about a saying about building the plane while you're flying it?
Paul 8:54
Yeah, I don't know what it is, though. But I understand the analogy. Yeah.
Scott Benner 8:58
I couldn't explain it well, but I think it explains itself.
Paul 9:02
Some days feels like we're, you know, you're flying while you're building the plane. And it's you're bailing out water as the plane floods as well.
Scott Benner 9:10
Right. So isn't it isn't it? Isn't it exactly like that? It's because I'm imagining three years ago, you and your lovely wife are living. I mean, your body would just say you're an executive chef.
Paul 9:20
Yeah, I'm an executive chef. I work for a corporate dining company. So we do a lot of dining for, you know, like, corporate dining for Uber and Twitter and, you know, large bay area companies with 1000s of employees. So we do on site food service for some of the larger tech and.com companies.
Scott Benner 9:39
And that's a job you really enjoy a match. I don't think that's something you can do if you don't like it for some reason.
Paul 9:44
You know, there's, I guess in the culinary world, you can, you know, there's kind of two sides to it. One you can work in public restaurant. You know, like, sure you have a downtown area that has tons of restaurants, where you can, you know, work as a line cook or even a chef and your days are like when I was in my early 20s, you know, 1516 hour days, six, seven days a week, Thanksgiving, Christmas, all that you miss all the birthdays, all the holidays, you're in there from open to close every day, and the pay is substandard. When I got married, in 2007, I was working as a sous chef at a popular Mediterranean family style restaurant. And I would kiss Margarita on the cheek when I left for work in the morning at like 630 when she was asleep, and I would get home from work at 130 in the morning, kiss her on the cheek while she was asleep in bed. So I quickly explore my options to find out you know, before this marriage starts, how can I help it succeed by spending more time. So I've ventured into the world of corporate dining. So the world of corporate dining is Monday through Friday, get in about six I leave about 230 Every day. I'm off on all the bank holidays, regular holidays. And the pay is two three times three fold of what it would be in, I guess what you would say a regular restaurant.
Scott Benner 11:22
Let's see Paul. That's my point. You got everything together. And then life hoisted you up to 40,000 feet and said, Hey, your kid has diabetes. Figure it out before we crash?
Paul 11:32
Great pretty much. Yeah, yeah. In a nutshell. Yes.
Scott Benner 11:35
Absolutely. Well, what was it like when Justin was diagnosed?
Paul 11:42
Shocking, is I guess what stands out the most but the the story leading up to it, as you've probably heard a lot of times with the thirst and then excessive Bedwetting, and daycare. He was in daycare. And so you know, he's drinking a whole lot of water. And so it's okay. So a week later, you know, he's really drinking a lot, a lot of water like, you know, 10 times as much as the other kids. And so we message our primary is pediatrician. So yeah, it's fine, whatever, you know, don't don't worry about it and message him against him. He's wetting the bed every night and attitude. He's, you know, he's just been really, really cranky. And we got to take a bath, and he's just crying and crying. And so it finally took him to go into DKA for us to you know, I guess take him in, he was super lethargic, and breathing was, you know, concerning. So we took him to a respiratory clinic. And we thought, oh, maybe COVID. You know what, whatever it could be. They did a bunch of work at the respiratory clinic. And they couldn't really find anything. They were waiting for the bloodwork to come back. And they said, well, while we have them here, let's take some urine. So they took urine. They couldn't really give us a diagnosis. So they sent us over to the pediatric emergency. And while he was kind of going through the routine of being admitted there, the doctor called me from the respiratory clinic and said that they found sugar in his urine and your son has type one diabetes, you're going to be at the hospital for three or four days. The rest is Oh, my,
Scott Benner 13:27
I'm sorry. The respiratory clinic didn't recognize the small respirations. No. Well, geez, respiratory clinic respiratory. Okay. Yeah, it's okay. So you got Wow. So you tried to find out what was going on? And nobody was able to help you.
Paul 13:47
Yeah, we reached out to our primary care and now even some, some Google or some internet search results, but man, I guess that's if I have any gripe about the situation is that you know that and I don't know, I'm not I'm not a doctor. I didn't go to medical school, but seems like if you're emailing your, your primary care, and they don't recognize that excessive thirst and Bedwetting, you know, just the classic symptoms. Maybe something needs to change. There needs to be more education, but Yeah, seems like all the classic signs. But
Scott Benner 14:28
well, don't worry. Once you educate those people, they'll move on and get different jobs. And then there'll be a whole new group of people to educate and it'll just keep sweet. and over again, oh, my God. Yeah. Well, where are you in the hospital for that many days?
Paul 14:42
Yeah, well, the thing was when he was admitted it was only one parents in the hospital at a time because of COVID until he got admitted to pick you for the pediatric emergency ward. thing. And they tried to stop me from going in was the way I'll put it.
Scott Benner 15:07
It didn't work out for them. I'm on
Paul 15:09
like, six, seven to 50. So yeah, I mean, I, I didn't forcefully make my way in, but I was in there with him
Scott Benner 15:16
and my wife, Paul, you're six feet seven inches tall. Yeah. And we've got 250 Oh, my goodness.
Paul 15:23
That's not telling me no. So many words, I'm going in with my sons.
Scott Benner 15:27
That's crazy. Come from a tall family.
Paul 15:31
Yeah, my dad was a six to my mom is was average. But yeah, there's some pipes down the lineage.
Scott Benner 15:37
Wow. So after the diagnosis, what do you think struck you first, because you have a pretty, you have a pretty coherent list of things you want to talk about. So I'm wondering what got to your first.
Paul 15:54
The the first thing was, I guess, my understanding of how much I didn't know about diabetes. So because he, you know, he was in DKA, they were monitoring for brain swelling, which didn't happen. So, which we're grateful for. But I remember asking the doctor, okay, like, you know, when is that when is he cured? Or when does he not have it anymore, so we can go home. And our whole world kind of change over the next, you know, 24 hours as we started learning more information. So I just remember feeling like helpless, like I didn't know what to do, or how to help. And then not having the knowledge or information to, to help. So helpless was the first and a real emotion that I had. And then Then came the grief. But I will say that, you know, we spent three days in the hospital probably didn't sleep very much at all. And then before being discharged, had to go to a three hour kind of crash course in diabetes management from the on site, diabetes educators, which we retained 0% of the information from
Scott Benner 17:18
Yeah, it's hard to listen. Impossible. Yeah. And remember, it's it's very interesting that on the on the first day, that you were just under the impression that there was a medical problem that would be cleared up somehow.
Paul 17:32
Yep. Yeah. Wow, that's 100%.
Scott Benner 17:35
So while they're dumping all that information into you, you're just sitting there, grieving. Confused.
Paul 17:42
Yeah. I mean, Justin was 18 months old, crying the entire time. And, you know, he's just got poked and prodded and he hadn't slept. And it was just really, really emotionally draining. And then to hear some of the, you know, the stuff that they diabetes educators were sharing. As they share more and more information, you kind of in the moment are realizing how much everyone's life is going to change. And it's a lot to take in right after what we've just learned and all the previous 72 hours. How old are you, Paul? 4646.
Scott Benner 18:27
So you waited that children till a little bit? We did,
Paul 18:30
we went down the road of you know, let's, we can either be young and not afford it or be a little bit older and afford it. So.
Scott Benner 18:42
So he tried to do everything right. And
Paul 18:46
yep, still exactly. Yeah. Yeah.
Scott Benner 18:49
Still a life game for you. And you sound like a pretty emotionally mature person. Oh, thanks. Yeah. I mean, listen, we've only been talking for 15 minutes, you might be an idiot. But for now, I think you sound like a pretty emotionally mature person.
Paul 19:07
I will. We'll circle back at the end and let me know what you think. Well,
Scott Benner 19:12
also, I've heard crazy stories about people who work in restaurants that I'm not going to ask you about because we have serious conversations that here, but all true. Yeah, right. It's a big orgy. Isn't it Paul?
Paul 19:22
Tell 100% Yeah, everything you hear is is generally true.
Scott Benner 19:27
Yeah, okay. And in the chain restaurants, the food's all prepared. They just Soviet right, like it's frozen and then they just do a lot of places do that they're not really cooking for you.
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Paul 23:43
Yeah, I guess you look at it as if you're getting a full rack of ribs with a baked potato and some vegetables and a side salad and a general and a coke for 12 bucks. You know, no one's probably actually taken the time to prepare that foods probably coming from a factory right frozen or you know in bags and they're just reheating and serving.
Scott Benner 24:06
I know it Paul told me the sense. I've never worked right.
Paul 24:11
Opposite gun the opposite side if you you know went to a local place little barbecue joint that smokes or on brisket and does all their own sides. You're like well, you know, why is brisket $27 a pound?
Scott Benner 24:24
Yeah, that's because somebody actually made it for you. If somebody woke up
Paul 24:27
at midnight and smoked, I think for 16 hours
Scott Benner 24:30
if I only worked in a diner for like a week when I was I don't remember really young. And it was just such a hustle like clearing tables and washing dishes and everything. And then I quit for two reasons. One I was I made coleslaw in a trash can. Not a trial. It was not also used for trash, but not a point, right? Like it was basically like dump all these and then reach them with your arms and turn it over and turn it over until it's coleslaw, that flipped me out, and they would feed you, but then charge you full price for the foods. So by the end of the week, you really didn't make very much money. And I didn't realize I was like a kid. They're like, You want dinner? And I'm like, oh, yeah, great. It's just wonderful. Thank you. And then I was like, I'm not doing this. So I left.
Paul 25:22
Well, at least you spent a week.
Scott Benner 25:24
I did. I did. I stayed. And I was like, maybe I can tough this out. But he's just was this girl. It was really I mean, as a kid, but it was like grueling work. So he just never stopped. And the kitchen was always somewhere between like, like viciously on fire and somewhere humid near the dishes, and just none of it. None of it was pleasant. But so, so you get out of the hospital. I mean, I have all the empathy in the world for you. Arden was two years old when she was diagnosed. But none of the technology existed then. So did they start you with a CGM? Yeah, I would imagine. Yeah.
Paul 26:00
So yeah, we were. We got sent home with the CGM. And then we were on MDI for about a week and a half, two weeks, and then we started the Omnipod dash.
Scott Benner 26:20
Okay. MDI, and were you pushing for a pump? Or are they trying to give you one?
Paul 26:27
We pushed for every we weren't. We advocated as much as we could for every piece of technology and equipment that would preserve our son's health.
Scott Benner 26:40
Yeah. How did you find out about it so quickly?
Paul 26:44
We, so we left the when we left the hospital, one of the attending physicians told us about Brave Buddies. Are you familiar with
Scott Benner 26:58
I don't know. And I'm looking it up now.
Paul 27:00
So Brave Buddies is it's pretty much an online form. For for type one, diabetics, people will give away supplies or ask for help. It's, it's, but then lack of better term, it's like a Facebook page. But it's all through email through a server. So now if you're on vacation in Orlando, and you forgot your T slim infusion set, you can post the message up there and it gets emailed out to everybody and someone in the community will have one or you know, extra cents or whatnot. That's cool. So it was initially it was a way to connect with other families who had type one diabetic children, or were type one diabetic. So it was kind of offered as an emotional support, kind of reach out to other people. And I started reading the posts and people talking about all kinds of pumps. So I looked into it.
Scott Benner 27:54
Nice. And did you find that? I mean, I'm imagining you found it helpful, or, but how was it managing? Well, I guess the first question should be did Justin have a honeymoon?
Paul 28:10
Yes. To what extent or degree is that? I don't know. It's a lot of it is a blur. But look, looking back. Yeah, I mean, he was he was definitely dumping out, dumping out some insulin overnight. Yeah, before we got on the pump, there's a lot of overnight lows followed by too much juice and overnight highs and the pump really helped regulate that and got us some sleep. Nice.
Scott Benner 28:40
This Margarita work. She does. She does. So she has a full time job. And so do you. Correct. So baby was in daycare? So then what do you do with him? I mean, now, does somebody stop working or?
Paul 28:56
No. So we, when he was diagnosed, he was at a small family daycare. When he came back home, we tried to reach out to the daycare and speak to the owner about what caring for him would look like. So we got as much literature as we could. We translated the hospital translated all of the, I guess the binder that they send you home with into Spanish. And so we went to kind of sit down and meet with them and kind of go over protocols and procedures, which we looking back at the time, you know, really didn't have a big clue to what we were doing. But kind of the willingness and the communication just really wasn't there. And then COVID hit so we just pulled him completely out of daycare and cared for him at home. Oh Okay. I was, I never, neither of us ever lost our jobs. Both of our jobs paid us to kind of work from home, which as a chef kind of seems ridiculous. But I was creating a cooking classes and soothing and Thanksgiving turkeys and prime ribs and just filming them. And we were posting it for a bunch of people to see it at work who could log in? And?
Scott Benner 30:32
Well, that's Paulette, so your company, had you create food? And share it in video so that the employees might continue to eat well, during COVID? Correct? That's really nice.
Paul 30:44
Yeah, it was a it was a way to, you know, even though we're not physically there serving you food, we can still, you know, share recipes, show techniques. And, you know,
Scott Benner 30:55
that's great. Yeah,
Paul 30:57
that's fine. So we were both home for a while Margarita eventually went back to work. And then, you know, we were faced with the decision of, you know, we were both going to need to go back to work. What are we going to do for daycare options. So we found, and this is I can't say how grateful I am for this. But we found a daycare. That was like 20 minutes away from our house. That is run by a t one D mom, her daughter was diagnosed the same age as Justin. Her daughter is now 21. She did it for the technology in New York as a single parent with three other kids.
Scott Benner 31:44
And she might know what she's doing.
Paul 31:47
She knows what she's there. Yeah. So he started there. He's currently still there. He's on summer vacation now. But yeah,
Scott Benner 32:00
that's, that's very lucky. And it just fortunate.
Paul 32:04
Yeah, it's, we're, we're so great. There's no not even words to express how grateful one person can be to have another person in their life that understands and gets it, especially when they're caring for your child.
Scott Benner 32:18
Okay, and I've stocked Margarita, she has a cool job. You don't have to say, you don't have to say she does. Yeah, but that's, that's pretty cool. So yeah, it is. Alright, so this isn't been long for you. This is, you know, 18 months to a year and a half. You're just Are you back at work cooking for people again? Yeah, we're back. Okay. And, and so this is all kind of chugging along now. And it seems like you're in a place where you're just looking for normal. I mean, cuz COVID was like, it was strange, wasn't it? Like, you know, it was somehow relaxing and anxiety ridden? Together? Yeah, I nailed it. I don't know how that happened. But, you know, it's, it's everybody's life was like the way you imagine it in a book. Like This must be how the Kardashians live. They just get exactly they get up at 10 o'clock. They make an egg.
Paul 33:15
Yeah, it's it's life right there. Right? Pretend make an egg. Yeah, lay by the pool.
Scott Benner 33:19
Go for a walk. Have a spritz. It's so like, you don't I mean that you start thinking about what are we going to do for lunch? If I screw lunch? We'll make a nice dinner. It doesn't even matter. Nothing matters. You want to vacuum? Yeah. All good, right? And then the other part of is like, I really think I'm gonna get sick and die any second now. In that, you know, in your head, and when am I gonna go back to work? And how is this all gonna go and everybody's life is on hold. Very weird. Just a very strange, we are still seeing we're still seeing the impacts of how it retarded people's progress students. You know, there's, there's a girl on here recently talked about meeting, meeting a guy and they started dating, and they started to become intimate and then couldn't see each other anymore. And then we're suddenly standing on a sidewalk talking to each other from six feet apart. And yeah, you know, just all the weird ways that the flow of life has been you know, impeded at that time. So you're probably I'm gonna guess mostly Lucky for you because you you got to deal with the diagnosis a little bit without being pressured about going to work etc.
Paul 34:30
Correct? No, there wasn't. There wasn't kind of that oh, shit moment. We had some time to process
Scott Benner 34:37
right and then then you get I am going to call it lucky, like Lucky meeting this person who runs this daycare is I mean, it's nice because can you imagine if that person didn't exist, and now you get thrust back into the world, the both of you were Where's Justin right now? You know?
Paul 34:53
I I can't I? It's hard to imagine. It's going to be even more difficult when We do the next transition into kindergarten. You know, we're we're pretty lucky right now that you know that someone else has his follow data and knows what to do with the information, you have
Scott Benner 35:13
two more years to tighten up your understanding of things too, and all that other stuff, which is great. But But you talked about in your note about a marital strain. Did that happen? Slowly? Was it very quick? Did one person try to take hold of like, take control and or how did it fall?
Paul 35:33
No, it's, you know, like most other things in our marriage, it's, it's equal participation. No one's taking ownership over anything, including diabetes management, it's always kind of been a, you know, a group decision. But, you know, there's, there's so many nuances and, and one offs and decisions to make. And sometimes you just don't know what the right thing to do is and that, you know, we, we started with the dash and then started a six month study, and he went on the tandem. And then Friday, we started the Omni pod five. So we've had some transitions, and a lot of times was transitioning from one device to another, you know, there's some kinks to work out,
Scott Benner 36:26
ya know, it's not easy. Just settings are different in the way the device acts some algorithms to not having an algorithm, it's, it's a lot. So when you say, so when you say strain do you mean? Do you just mean a loss of, of normalcy? Or do you mean actual, like, butting heads?
Paul 36:48
You know, butting heads is a strong term, but we've always been pretty free and easy in our relationship in our marriage. But there's, you know, there's never been an obstacle, you know, like diabetes or diabetes management. And it really puts a puts a test and a strain on the body, you know, not really the mind but you know, you being tired all the time doesn't doesn't help a lot in the decision making process for sure. But you know, if if he's a growing toddler, so if he's going to bed and he's getting this huge growth hormone spike, and he's shooting up to 250 and we're not think the pumps doing enough and do we Bolus Do we not Bolus and go I'm gonna Bolus well don't Bolus because it might auto Bolus. So still a lot of back and forth. And a lot of, you know, disagreements sometimes on on what to do for treatment, or, you know, he's at 76 trending down, do we give a crack? Or do we give juice? You know, a lot of it is just stressing. And yeah, it's a lot of sometimes it's not knowing what to do and thinking the other person has the answer. And you just kind of go back and forth until you're exhausted with it.
Scott Benner 38:03
For me, I find that either falls in the you really believe in what you're saying, and the other person disagrees. And that causes an issue, or you're sitting there thinking I need you to know because I don't know, their thing. Yeah, I need you to know, because I don't
Paul 38:18
it's definitely a lot. A lot of the you know, when somebody asked a question like, oh, you know, he's, he's training high. Should we give a correction and you're expecting the emergency? Yeah, probably a quarter unit should be good. And the other person goes, I don't know. And then you look back then and they go, I don't know. And you go. Okay, well, I guess we'll just stare at our Dexcom for another half hour and see what happened.
Scott Benner 38:39
Let's ask Justin what he thinks. Care. Hey, buddy, just grab this pinky. If, if you want to die now. It's, it's ridiculous. It's it's a lot of stress and not for nothing, you're in a specific situation. Meaning you, you waited till you were older. And it sounds like for the most part, your life was going pretty well. So yeah, not a ton of speed bumps. And then you get you know, then you get a I don't know, it's not just a speed bump, right. It's a it's a mountain. And you're and there's no input from anybody about how to do it. It's terrible. It. I don't know. I feel like I can't remember it anymore. Yeah, and yet, I feel like I understand exactly what you're talking about. Because we had all of those situations come up, like, Come on, just tell me what to do. What do you want to do? I don't I don't know. And the other thing is, my wife is such a bright girl, you know what I mean? And, and I calendar, so much like she's one of the few people like I really trust with her opinion, you know? And then all of a sudden you turn to her and I'm like, I need your opinions. Like I don't have an opinion.
Paul 39:49
Yeah, I feel the exact same way. Margarita has always been the, you know, more studious of the two and I've I guess more street smarts for lack of a better term, but together, you know, it's very cohesive and it works extremely well together. You know, where she's more analytical and more, you know, whatever, the quarter unit, whatever, it's fine. But together, you know, that kind of meshes together well, in everything that we do in life, not just not just diabetes.
Scott Benner 40:19
Yeah. Yeah, I got it. So tell me a little bit about this. You participated in a study already?
Paul 40:27
Yeah. So we participated. First of all, shout out to Dr. Bruce Buckingham at Stanford. Been doing diabetes research and education for over 4550 years now. He's a retired pediatric Endo. So we were in his study for FDA approval of the T slim and Justin's age group. So, six months, we were on the tandem. And it was, it was good. The the control IQ worked really well. It helped with overnights we probably went through, you know, months at a time where we slept through the night. Which is amazing that he Dr. Buckingham is the kind of person where he's taken zoom calls at 930 10 o'clock at night after Justin is asleep to review settings and data. And we had an issue the other night with Omni pod five. And even though he's no longer we're no longer in the study. He helped us transition over at a zoom call with him at like 130 in the morning. So he's just really committed and it was a really, really amazing experience. We're very, very grateful to have had access to that the tandem T slim for for his age group. Yeah. I will say it's been since it's Wednesday now. He's been on the Omnipod. Five since Friday. I do not miss the tubes, or fanny pack that you would have to wear with it at all. Yeah. I hear that. But the control was was fantastic. Right. I think for the last 90 days. It was like 86% in range. So you can't complain for a three year old?
Scott Benner 42:22
No, of course. What was the study for to get? Approval approval for lower ages?
Paul 42:28
Yeah, exactly.
Scott Benner 42:29
Okay. That's, that's great. Actually, do you know, do you know when they're did they ever tell you when they thought the study would be done? The study is done. It is done. So they have enough data to move forward. Right. Oh, that's cool. That's very good. Okay, hold on a second. You wrote here. This is interesting. You just wrote poop and bathing. And how it affects blood sugar's Oh, baby, I think I get but I want you to well start with bathing. What do you notice with your son?
Paul 43:04
What do we know? So by the way, poop and bathing, it's not Oh, one it's two separate occasions. Imagine in the bath? Yeah, yeah, I imagine. So bathing, if we bathe him. So generally, he'll have dinner 536 o'clock, then he has a bath about seven 730 in bed by 815. So if we give him a bath, he will generally say he's a 150 takes a bath. He may go up to 190 and then back down to like 130 After the bath. And we've you know, it's been explained to us and the waters hot and Slin surface of the skin and all that. But sometimes it doesn't happen. And sometimes it does happen. Sometimes. The finger sticks match and sometimes they don't match. So I'm just interested to hear other people's experiences as well.
Scott Benner 44:03
Yeah. Does it ever seem like he's like playing in the bathtub like excited? Could it be adrenaline?
Paul 44:10
It could be he's hot and cold when it comes to a bath. Some days. He's wants to take a bath for a half hour and some days. You drag him in there kicking and screaming to take a bath.
Scott Benner 44:22
Sounds like everybody I know. Exactly. Right? Well okay, well, I mean, listen, they the there are people who tell you that the hot water makes their blood, their blood sugar go up. There's people who tell you that the hot water makes your blood sugar go down. You know, I always think of it as maybe you get in the shower and relax and your blood sugar goes down. Right or maybe you get in the shower and I don't know. Think about the world and life and it upsets you and you know like I don't know like I don't. I do know that Jenny will talk specifically about like your blood. Like how How insulin works in your body, and, and the temperature that your body is at. But I mean, it seems crazy to me to think that in 10 minutes, something could change so drastically with the temperature of your body that your blood sugar goes like, like, like firing one way or the other. Like, it always seems to me like it's got to be something else. And then there's times that Arden will take a shower at the end of the day, and she'll get lower. And there are times that she takes a shower at the end of the day and her blood sugar goes up. And I so is the shower. Really part of the equation? You don't even need the mystery, right? Yeah, right? Or is it just, you know, one day she ate a larger meal that she didn't Bolus well forgot in the shower in her blood sugar went up in one day, she did a great job with her blood sugar. And she got in the shower and relaxed and her blood sugar went down like I don't know. I really don't. I'm not Yeah, we
Paul 45:55
we worked with Integrated diabetes. And we've met with Jenny a couple times. And it's, you know, everyone's experience is different. And I think it's just one of those. You know, like you said, what Jenny talked about what the hot water and even were in the study, we were talking to the endocrinologist and said, Yeah, you know, if you've recently Bolus and you know, insulin is still close to the surface of the skin that may have this effect and that effect, but at the end of the day, when, you know, he takes a bath, he's obviously when he was on the tandem, he's disconnected from the pump, so he's not getting any basil. So we will see, regardless of if the spikes are one way or the other during or after the bath, we do know that about a half hour later, he'll start to trend up because of missing basil. So we'll have to Bolus half hour of basil
Scott Benner 46:48
now that that, obviously, the first thing I should have said that I didn't. But yeah, you're you're on a two pump and you were disconnecting. So I don't know, man hit listen, here's what I'll tell you. It's diabetes isn't easy.
Paul 47:04
She said, right, that show about a show about it?
Scott Benner 47:09
I think you I think the key is, I mean, I guess the the key is to see what's going on, learn from it, try to anticipate it next time and stay a little bit ahead of it. I do really wish that. I don't know, there's part of me that thinks the podcast should be 20 minutes long, one episode, and it should say, hey, type one diabetes, it's difficult. Learn how to use insulin, stay flexible, you'll be alright. Like you don't even like there's because I think that applies to almost like at the beginning of the conversation where you were talking about, you know, the impact of one thing and you're like, I think you said like, well, it really is like that for everything in life. And I think that I think that's right, for diabetes, too. I think that in the end, it's about using insulin well. It's about timing and amount, and staying flexible enough that you don't get stuck in an idea to the point where you say, I have to know what what what is this that's happening? You know, instead just saying, look, it's going to happen. And here's how I fix it. If it goes one way, and here's how I fix it, if it goes another way. And until you can come up with a real answer, you know?
Paul 48:15
Yeah. And Margarita is very, you know, cynical in that way show. Where I, the way my brain works is, you know, I mean, I work in a kitchen. So my, my movements and my actions in the kitchen are very methodical. And when I do something, I expect a certain result. If you've braised beef 100 times, and it comes out wrong once I'm going to overanalyze the situation and find out what happened with diabetes, that doesn't work. You just need to correct and move on.
Scott Benner 48:48
Yeah, he's got another piece of meat and go again.
Paul 48:52
Yeah, well, what if you don't have any meat? So yeah, it's, it's, it's been a little bit more difficult for me to, you know, accept some of the, you know, high highs or low lows, and just, you know, correct and move on. I always find myself, you know, wandering and anticipating. Not so much so I can figure out, you know, what went wrong, but kind of just to be better prepared for the next time.
Scott Benner 49:22
Yeah. Well, listen, let's, you do have to do that as well. You know, you have to you have to take in the data and look at and step back and look at it. Do you ever come up with answers? Do you ever think oh, I know what happened.
Paul 49:35
Um, yeah. I mean, I think I think I do. And until something happens that disproves it, so yeah. Then we start from scratch again. But yeah, I mean, it's, it's, you know, it's a learning experience. And I do think that knowledge is power and, you know, just kind of recounting what happened, and trying to do better Next time,
Scott Benner 50:01
how is the diagnosis and the ensuing time? How's it been for you personally? Can you disconnect Justin from the conversation and talk about yourself? Rarely. I mean, do you ever get to think about how you feel about it?
Paul 50:17
Yeah, I mean, I mean, I've processed it. We're, we're talking to a therapist now that we meet with. But it's more for family therapy. But, you know, just as myself it's, it's hard to disconnect. You know, I'm, I'm still sad. That's for sure. Yeah, still, still heartbreaking. But, you know, I need to be strong for him and for my family. So a lot of times, you know, however, I'm feeling gets pushed aside, which is okay, I'm not, not a very selfish or self centered person have always had the giving and caretaker mentality in me. And I do it, you know, for living through food, feeding other people at work. So kind of second nature in that in that
Scott Benner 51:14
aspect. Yeah, I was gonna guess that. Yeah. Well, the family therapy sounds like a good idea.
Paul 51:21
It is. And a lot of it is, you know, centered around how to get Justin to do things. I never, in my adult life, had heard the term threenager before. Wait a minute, but guess what, Scott? Yeah. You don't know about threenager?
Scott Benner 51:41
Justin difficult. Are you telling me the kids kids hard to work with?
Paul 51:45
Yeah, a little bit rough around the edges. Yeah. So aside from the terrible twos, apparently, there's also a threenager. So it just kind of an extension, his twos weren't weren't that bad. But the threes are a lot of nose, obviously. But it's just everything is, everything's a challenge. Whether it's brushing your teeth, or taking a bath or going to bed or getting dressed, it's all it's all. What we've come down to find out is having him be his choice. So we worked with the therapist and say, you know, like, bath time, bath time was always a struggle. So she's like, Okay, well, you know, make it his choice. Let him choose. You know, what kind of toys he wants to play with blow bubbles, play music, have a dance party. And so you know, here we are. He's in the living room crying and we're dancing listening to Blippi in the bathroom. So
Scott Benner 52:45
46 years old, 672 150 pounds? Let's not.
Paul 52:49
Yeah, I'll send you a video. No, I don't want to say it.
Scott Benner 52:55
Yeah, you know, they're nice, like three times in the first 25 years.
Paul 53:00
Oh, three. So I got I got a few more to look forward. So you
Scott Benner 53:03
know, listen around. 678 that can be fun right there. You know, four years old, really cool. Boys, prior to puberty or fun 11 1011. And don't
Paul 53:22
get me wrong. I always like to use a sour patch analogy, you know, sour on the outside, sweet on the inside. He's an angel when he's in a great mood. And he's having fun is the greatest child on the planet Earth. But then the complete opposite is true
Scott Benner 53:38
as well. Does any of this correlate with his blood? Sugar's?
Paul 53:42
No? No. I mean, obviously. I mean, he's, he's, you know,
Scott Benner 53:46
really high. Yeah. Well, the Pro, I think,
Paul 53:49
I think it's a double edged sword. I mean, we've done we've put in a lot of work to make sure that, you know, he's in a good percentage, good amount of time and range. He rarely ever, you know, goes really high or very rarely goes really low. So, you know, he's used to having, you know, he's used to being in range. So, when he's high, it's, you know, for for a long, longer period of time, it's noticeable. Yeah. But he can be 100 Straight, take a bath and, you know, think the world's gonna end
Scott Benner 54:24
right. And I do not want to bum you out. And I'm sure that this isn't the case. But have you tested thyroid function?
Paul 54:30
Yeah, we can see thyroid and celiac recently.
Scott Benner 54:33
Okay, good. Would you get you remember the TSH for the thyroid? I do not know. Take a look at it if it's over two, but they told you it's in range. Go back to them. Okay, all right. Let's see. What else do we have here? Paul, you're a delight. I didn't realize this is gonna be so much fun. I never know how the guys are gonna go. Oh, really? Yeah, I love talking to guys about it. But sometimes People are like, they're still kind of closed off. They're like classically men, if that makes sense. And yeah, I understand. Yeah, you're more forward facing which is really, which is nice. But you're your wife so your wife's in the, in the in the podcast Facebook group, but you're not.
Paul 55:16
I am not I don't I don't care to partake in modern social media.
Scott Benner 55:23
I don't mean, actually. You wouldn't know it part of my job. So there's the I like the input from people. And I like I like seeing people help each other all all the good stuff about it. I love. Yeah, but you know, I'm 50. And exactly, you know, not like, if you if you put me on a desert island, you were like, Listen, you can have social media or I don't know, a television, we're only leaving one of them. I'd be like, Oh, just leave me the TV. I'll be.
Paul 55:54
Yeah, I mean, it has its you know, it has its it has its purposes, but you know, I'm not not interested.
Scott Benner 56:01
But does she come to you with things she's learned online? Oh, of course. Yeah, of course. And you've been helpful?
Paul 56:07
I do. I find it helpful. You know, sometimes the stories on there are heartbreaking. And, you know, I don't know if I want to read heartbreaking stories every single day. But you know, there's also successes on there. So couple people that we've connected with and had playdates that we've met through the group and whatnot. So I do see, you know, there is there is value to it. But with Well, I think with anything in social media, it's it's always more negativity than positivity. So I choose to stay away.
Scott Benner 56:39
Well, I think my Facebook group is more positive than negative. But other than that place, I completely agree with you. Of course, I met yours exclusive course, of course. And the the, so I get people's notes privately. Some of them are, are difficult, you know, I'm looking at one sitting here now like that I have to answer today. And it's just a person who wants to come on the podcast. And they said, like, I'd like to be a guest. My daughter has type one, and Down syndrome. She's 12 and has complex health conditions. And then, you know, I'm reading on, like, trying to pick in what this is, I'm already at the point where I'm like, okay, you know, she said, she dropped her a one C, you know, I'm like, great, like, she loves the podcast wants to come on and talk about what's going on. And I'm like, Alright, I got it. Right. Like, I want to say yes to this, but I'm going to keep reading the note because it just seems, I don't know, I it would seem wrong not to just read the entire note. And at the end, at the end, she says that she just had a stroke, and she's using a feeding tube now. And and you read that in like, okay, like, like, as that's so hard just to hear. But imagine living through it.
Paul 57:59
Yeah, I mean, yeah. I mean, I hear things like that my heart goes out to her and her family, right? That, you know, makes what what I'm doing seem almost easy, in a way. And so it's like, it's it's all about perspective.
Scott Benner 58:15
Yeah. And so that's exactly it. Like, obviously, I want to speak to this person, why not to hear not to hear a terrible story about her child's health. But because it's very possible that this woman has a perspective on life that the rest of us don't 100% And I want to hear that. But then hearing the story in our mingled in it is, it's difficult, you know, it's, you have to tell the story, so that people understand where their perspective comes from. You can't just have her on and say, Look, trust me, this lady's life is harder than yours. Let's listen to what she has to say. Now, it just doesn't work that way. So you lay out the story. So now I've read the email. And I'm like, I'm also a real person, Paul, you know, and so not that it matters. But this has not been the easiest time of my life right now. And so like, I'm dealing with my own personal stuff. I have family, too. You know, people in my life are sick. There are people in my life who are, you know, everything, all the things you can think of, I'm I love somebody that has all those things, too. Or I have them. And then you get this note, you're like, wow, so I understand you not wanting to see it. And I don't think I don't know if it sounds harsh, but if if I didn't have this podcast, I don't know if I'd want to see this email either. You know, so,
Paul 59:36
yeah, I mean, yeah, that's, I will listen to the episode and I will take something away from it. But I don't I don't want to be exposed to something every day. Yeah,
Scott Benner 59:52
it's to me. Well, I think the one here might have talked myself out of listeners here if I'm not but I think the I do think the one thing that a modern like this modern life allows, is it gives you access to so many people's stories, and so much access to news and things like that, that I don't know that our brains are meant to know what's happening in, you know, the trucker strike in Canada and a shooting in Kentucky and, you know, a warlord and someplace killing a group of people. And I don't think we're supposed to, like, consider all that stuff. Seems like a little bit much. Yeah. You know, because especially when you have no agency over and like you talked earlier, one of the first things that hit you when your son was diagnosed is a feeling of helplessness. So what stops me from hearing about people being treated poorly in I don't, Australia, and now I on some level feel helpless about that. It's just, you know, I mean, I don't want to live in the middle of the woods for I don't know what's going on anywhere. But we're exposing ourselves to so much stuff. And everything feels like it carries the same wait for some reason, like from like, like, I my social media this week. I'm not gonna lie, my social media this week. What is this guy's name? Give me a second. I'm gonna figure it out. It's completely ridiculous. I could just say. Okay. I am in a I am at a point now where I've been made to feel bad for the Cubs catcher. He's had a tough couple of weeks, Paul, because, yeah, Wilson Contreras. It's had a tough couple of weeks. Everybody kept saying that he was gonna get traded, and it was stressful. And then he didn't get traded. It's been hard on him. And I've read like three blurbs about how hard it has been for him. And like so like, don't get me wrong. Like I'm not walking around my house like punching holes in the wall going so unfair how Wilson Contreras this beach? Not him. Poor guy. This guy. I don't know. What is he? He probably only makes I should look just to make the story fun here.
Paul 1:02:15
I wonder how much he makes?
Scott Benner 1:02:17
Let's find out for a second. Well, listen, see, here it is. He's a young guy. Wait, he's 30 years old. But he isn't making enough money.
Paul 1:02:27
I think the league minimum is like 350,000.
Scott Benner 1:02:30
Yeah, I can't believe him about the same. He's only making a half a million a year. So the guy is being treated a little poorly or guy. But but but but you know, like, here he is the guy making a half million dollars here. He plays baseball. And my social media set me up to feel badly about it. Yeah, and I was like, now did I take the bait? I gotta be a little bit. It's in me somewhere because I'm aware of it. Like when I reached for an idea, it popped into my mind. I'm not walking around. Like, you know, I'm not I'm not getting ready to overthrow governments so that Wilson gets paid correctly and depends on where he belongs and all. But um, it's still it's it's in the back of your head. Like it's it's like a pile of dirty laundry. Like a for everybody's woe is a sock. You don't I mean, like, eventually it goes up to the ceiling. And it's overwhelming. I'm like, I can't do all this laundry. I can't. I don't know how to help Wilson. You know what I mean? My son just graduated from college, he's having trouble transitioning. I don't know how to help him. My daughter is getting ready to go away to college. I'm assuming she's, you know, putting on a brave face. And she's excited for a number of reasons. I also imagine she's nervous for a bunch of reasons. You know, like, at this point, it's my 26th wedding anniversary. I just left my wife's gift on the table downstairs because I couldn't find five seconds to talk to her yet today. So yeah, you don't I mean, like it's, uh, I don't know, I don't think it's important for me to know everything is happening in the world. True story, that's all anyway, went a long way for that. But now we know about poor Wilson.
Paul 1:03:58
We do struggle is real. Yeah, by the way, here,
Scott Benner 1:04:00
here. Let me tell you what Yahoo Sports says. Okay, the club's handling of Wilson is a Contreras, at deadline is shameful. Can you imagine it's shameful. I almost want to click on this link to find out why it's shameful.
Paul 1:04:17
Well, if you click on it, then that means that you're interested in SEO get more on your feed now. So
Scott Benner 1:04:21
I know and I know I've done it. I've already done to myself. But But I mean, I mean, honestly, shameful. Is that not a pretty harsh word? Like I use the term butting heads earlier. And you were like, That's too harsh. Yeah, it's too aggressive. I mean, I don't know. I just I don't know. And I'm not making fun of athletes. He's a person too. And I'm sure it was difficult for him actually, like, let me take that back. I'm gonna take the whole thing back. I'm sure it's been difficult for Wilson Contreras and not know where he's going to be when he wakes up on Wednesday morning. I bet you that is not pleasant, and I don't think it matters how much money you make.
Paul 1:04:59
I mean, Worst case scenario, he has to get on a first class flight somewhere,
Scott Benner 1:05:03
it's going to be bad. Like the, the guy that I don't know, usually carries his bag probably won't be there. So, but I'm just saying that I don't need to know about it, that's all great. But there are some things that you learned that are helpful. So I don't know where the line is, I don't know if we're gonna mature. And, like, you know what I mean, like, I don't know, if like one more generation removed, we'll know how to ignore the parts of all this, that that aren't important. Or if this is just going to be a thing that people aren't built for. And it and it it. It weighs heavy on us for a long time. I have no idea.
Paul 1:05:43
But there's there's just, there's just too much. Too much information everywhere. Yeah. And you know, you're almost in a position where you have to pick and choose what you want to care about.
Scott Benner 1:05:57
Right? Yeah, no, I even like politics is such a great example. When you're younger. No one cares. You don't care when you're younger than No, but when you're younger, you don't care at all, then you hit an age where you do care. And then you hit an age where you go, Listen, I don't know how many times I'm gonna hear the same story. It's just changing. Like, like, the the nature of people hasn't changed in my lifetime. I'm going to ignore this again. It's, um, you go through seasons for certain. Alright, so what is your what's your favorite thing to make? Well,
Paul 1:06:30
we're in California. So I have the luxury of using what seasonal so there's not really one particular favorite thing to make. It's just working with what seasonal and it looks and tastes the best. So we're kind of spoiled, where it's a pretty, pretty good climate here in the Bay Area in California. So we have hundreds of farms within 150 miles of the kitchen. So
Scott Benner 1:07:00
let's get like an eclectic mix of things that you can work with.
Paul 1:07:03
We do I recently started a smoker program so we we feature something smoked every week, whether it's brisket or Tri Tip or St. Louis ribs. So yeah, we talked to work into buying a $5,000 Yoder Smoker. So I get to play with that at work.
Scott Benner 1:07:25
Is that pellets? Or is that would know what wood fired? wood fired? How hard is that to figure out how to learn how to do?
Paul 1:07:36
How hard is it?
Scott Benner 1:07:39
Like how long does it take you to figure out how to get the fire burning? Right?
Paul 1:07:42
Oh, no, three years? There? Yeah. Yeah. It's it's, it's a process like anything, you know, you have to learn it and understand it and you think you're doing everything right. But then you have the wrong kind of wood because the woods wet. So then you got to find better wood and you finally get the wood but then the beef you got it's not that great. So on and so on. So it's like anything in life, you know, you have your your trials and errors.
Scott Benner 1:08:08
I only have a pellet grill, which I bought during COVID. Because I was like, What am I going to do? Because boredom? Yes, I'm like, I'm gonna cheat. I'll learn how to do this. And I basically, I guess I use it for some, like basic ideas, but it's amazing how well it works like from like, you know, like a pork but just for pulled pork. I mean, amazing. Not difficult. I buy. Usually I grab a couple of steaks, and soak them and then just slice them up. As I as I eat them. Like I don't even like eat, I don't even make the steak and then just bring it inside needed. Like I have a little bit of it and like that was good. And then I put it away and then I'll yank it out every day. And maybe just take a couple of slices off it throw a little like, I don't know, pink salt overtop of it and eat it with something else. It's amazing. Once you understand how important the time it's just time and temperature. Yep, yeah,
Paul 1:09:00
it's it's really all it is. And the only difference that my preference is to use an offset smoker. So pellet smoker. You just don't get as much of a pronounced smoke flavor. It's fairly light. Yeah, with a wood burning offset smoker, you can get that that deep smoky taste. We've been trying a lot to imitate Texas barbecue, so just kosher salt and 16 mesh black pepper on your on your protein and then it's all about time and temperature.
Scott Benner 1:09:31
Yeah, really is love. I didn't have somebody with deep pockets that I could snuck her into buying me a smoker, so I had to buy it myself like a true story. Yeah, I'm sorry. Don't be sorry. I mean, I'm proud of how you've accomplished this. I can't believe you got your boss to buy anything that seems seems like a heavy lift no matter what.
Paul 1:09:49
Yeah, I mean, it's. It was I've been working on this purchase for quite a while and the general manager who was Leaving, kind of pushed it through before he left. And so
Scott Benner 1:10:07
I say he's like, Well, this won't fall on me because I'll be gone. So sure take your smoker. I would take that that sounds right. All right, I. So I'm gonna let you go. But I want to check first, if we've talked about everything you want to talk about, then I want to ask you one other thing.
Paul 1:10:25
Um I think that the kind of the only obstacle kind of new thing in our life is starting the Omni pod five. And seems like for anyone else who's just started, I just like to share a little bit of feedback if it's okay, no, please. So we started Friday, today's Wednesday, the first pod failed. The first pod failed Saturday night. We thought that it was the algorithm learning but by the time he hit 300, we pulled off the pod, gave him a manual injection, and then started a new second pod. He did throw up twice, so we were in close contact with his Endo. But we decided to manage it home he had 2.9, where his ketones via blood. An hour later, they were 1.9. And by the next morning, they were point six. So I mean, we were able to manage it at home. But the algorithm is better on the second pod. It is learning. I think I will say that with any automated insulin delivery system, I haven't found and this is our third different from pump from dash to tandem to T slim to Omnipod. Five. So we haven't found any of them that can handle hormone rise and a three year old. So there's been mean from going to 86 89% in range to you know, hitting the lower 70s. Now, because he's high for four or five hours overnight, as our algorithm is, you know, learning. So to other people or parents out there that may be experiencing kind of the same thing. The algorithm did better on the second pod, and we're hoping to see improvements as it as it goes, we changed the next pod. Yeah,
Scott Benner 1:12:34
yeah, this, your episode will come out long after this happens. But I have three episodes that I just recorded with a CDE. And we put together a list of things to talk about, I got the list from the people in the Facebook page. And then the the list was given to on the pod. And they went over it and made great sense of it for me. And then we went back and I had the conversation with the CD, it's going to come out in three parts. But I think the takeaway from the pod five for me after hearing the conversation was settings are very important. Entering in with basil and Bolus, it's near 5050. A day is very important when you're starting the pod on the first one.
Paul 1:13:22
The first pod was like 3070, basil to to Bolus and then the second pod day one was like 5347. And then yesterday, it was like 4951. So yes.
Scott Benner 1:13:38
And what I meant was that the your initial settings that you put into the pod is where the pod begins to learn. But then it stops, listen, it stops taking your settings into account very quickly. But if you but if you're a person who, for instance, is under basil and over bolusing or over basil and under bolusing, or something like that, that's going to throw off the amount of time it takes the algorithm to learn things. I think the other thing I learned was that you still that you still have to manage insulin Well, like I think people have an expectation like that this thing's automated. I think they think this about all the automated systems, but it's automated. It'll just do it. And that's still not the case. You know, you have to Pre-Bolus your meals, you have to you have to get your carbs counted. Pretty right. You have to understand if there's going to be a fat rise 90 minutes from now that the algorithm doesn't know that. You know, that that kind of stuff. And, and you have to understand that it's not it's not super aggressive. So when you see a rise that comes out of nowhere, it's going to treat it like it would treat anything else. And then if suddenly, hormones is a great example, hormones are hitting like food. So imagine if you ate and didn't tell it you ate. The same thing happens when the hormones come
Paul 1:14:59
in Yeah, and that's exactly what it looks like. Yeah. You know, when he's, he's an avid milk drinker. So if we Pre-Bolus, you know, 1520 minutes, because we know when he drinks six ounce, the milk is probably going to go up 100 110 points, even with the Pre-Bolus. Even if strong, you know, like, almost a two unit Pre-Bolus for, you know, 30 carbs and 11 to that is milk, right? You know, it's really hard to avoid that spike. So unless you split the milk, but then when he goes asleep, you see that kind of similar like, plus 11 plus 12. You know, as he falls into that deep sleep as his hormones are kicking in.
Scott Benner 1:15:40
Yeah, wait, oh, wait, oh, what happened here last night, happens to you. It's, uh, somebody grabbed soft pretzels yesterday, and they just sitting in the house. And it must have been like, 11 o'clock or so. And I said to Arden, Hey, your blood sugar's drifting. And I was like, There's something about the angle of this line that tells me it's not stopping. And I know you're only 100 now, but I think this is gonna go 195 90 Like, I think I think in a half an hour, you're gonna be 65. Like, I just don't think, you know, I don't think the algorithms gonna catch it. Like, it's the, it's what I'm saying right now. And she's like, Oh, yeah. So she of course, waits too long to have like a small snack. And then, you know, she grabs some stability, but she grabs it at like, 70 instead of, you know, 90 where it could have been, and she just didn't flow. Yeah, had she just eaten it 20 minutes sooner, she would have grabbed stability at 90 and maybe gotten to 70. Instead, she held at 70 and was gonna get lower again. She starts getting lower. And she's I hear so I got it. I was like, okay, she eats an entire soft pretzel. Bolus for like, pretty aggressively, like she didn't do bad. And, like an hour later, like I was, I went to bed. I was like, I'm good. And Kelly was still up working. And she's like, Hey, I need you to wake up. She's like, I've been trying to help art and but like it's not working. And artists blood sugar went to like, 250 off of that soft pretzel.
Paul 1:17:15
Yeah, and pretzels are impacts just in the same way. They are hard and fast. Right? Right.
Scott Benner 1:17:19
So I just, I had her change some settings, and you know, with sleep, and when I woke up this morning, she was 90. So it all worked out. But you know, it's tough. And just imagine if it was something else adrenaline, pain, hormones, like these kinds of things. I think what people need to understand is that right now 2022, you can get tandem control IQ, you can get on the pod five, you can get the Medtronic device, you can get, you know, do it yourself loop, and the three, the three retail devices are going to be less aggressive, I guess, then you because you can make the loop be more aggressive, right, because it's more, it's more user definable, you can tell it to start correcting it a lower number, you can tell it to auto Bolus 10% 2030 4050 60% of what the it thinks, you know, you're a little more, a little more control over those settings. Whereas in the other ones, they they work the way they work, and they work amazing. There are for the most part going to keep you from getting low. And, you know, they're going to do a pretty good job with meals as long as you understand meals. And as long as you understand when the algorithm just I don't know what the word is, but it's beyond its ability at that point, you're gonna handle it, you're gonna have to jump in and do something. And, you know, once you learn that, I think you're good. I just I don't I desperately don't want people to think that. These things are just like, oh, you put it on and everything's like fine. Your blood sugar will be 93 the whole time. You don't I mean,
Paul 1:19:04
by no means is it a set it and forget it kind of thing. It's a drastic improvement from 10 years ago, but it's that that still needs to be managed. And I mean, I think since we've started the Omni pod five, on Friday, I've probably been up till 12 One o'clock in the morning just trying to see how aggressive it is and how much insulin it's giving at what rate because I want to understand it and know what it's doing. So if I go to make a decision and override to Bolus that I understand what it's doing and how it's working, yeah, so yeah, I mean, there is a learning curve to it. Don't let me all the algorithm has its learning curve while it's learning. You know, I'm trying to learn as well so I can manage manage as best I can to
Scott Benner 1:19:54
and from what I hear from people weeks from now, it'll be better than it is today for you
Paul 1:20:00
I think the five week mark is the kind of buzz that I'm hearing
Scott Benner 1:20:04
from people. Yeah. Now, I've heard all kinds of different stuff, but and so even what you're learning might change. But the truth is, and people, you're going to hear me say this a million times over the next year, for the vast majority of people using insulin, you put an omni pod five on them, and their life is going to just improve. But 100% Yeah. So, you know, I also believe that it's, I did it for the first couple of days that aren't used on the pod five, I was like, Well, this is, you know, I started comparing it to loop. And then I just realized I was like, they're not the same thing. Yeah, it's different. Yeah. So I'm, I let go of that very quickly. They're not the same thing. They shouldn't be compared to each other. If you want that, like, you know, if you if you're looking for that, like drill down type control like that, then you you need to look at that, do it yourself product. And if not, then, you know, this is what these things do. And I imagine they'll get better over time. Of course, all of them. So anyway, right. I think it's a, I think they're amazing. I think I think if you can afford them, you should try them. That's for sure. Agreed. All right, Paul. I kept you too long. So I can't ask you about the restaurant orgies in the massive drinking and drugs that I'm assuming you've seen through your 20s and 30s. working in restaurants but
Paul 1:21:22
ruin but invite me back for an after dark episode we're talking about if you had
Scott Benner 1:21:25
diabetes, you'd be right there. See where you're getting let down by not having diabetes, you cannot come back on. And my son said to me recently, she's like, Are you always going to just interview people with type one? I was like, people with type one have regular lives too. It's plenty interesting. Don't worry.
Paul 1:21:41
Don't worry. Yeah,
Scott Benner 1:21:42
don't worry. It is anyway. All right. Well, thank you so much. I appreciate you doing this.
Paul 1:21:46
Thanks, God, thanks for everything that you do. We're appreciative. And I didn't mention in the beginning of about a week after diagnosis, we found your podcast. And I think two weeks after that, we started with Integrated diabetes. And it really changed our kind of our philosophy and our, our way of managing diabetes. So thank you very much.
Scott Benner 1:22:11
It's my pleasure. I'm so happy you found it. 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. Podcast want to thank Dexcom and remind you to go to dexcom.com forward slash juice box start with that G six or G seven, sensor. And of course contour next.com forward slash juice box get yourself an accurate meter. It's easy to hold easy to use, and has Second Chance test strips contour next gen at contour next.com forward slash juicebox. I'll just remind you also to check out the private Facebook group Juicebox Podcast type one diabetes on Facebook. Although there are people in there with so many different kinds of diabetes, I should probably change the name. It's for everybody. Juicebox Podcast, type one diabetes on Facebook. If you're new to the show, please subscribe or follow in Apple podcasts, Spotify or anywhere you get audio. And if you've been listening for a long time, Please share the show with someone who you think might also be interested. Oh, and if you're really loving it, leave a five star rating and a beautiful review. Wherever you listen. Sharing the show is how it grows. So whether it's through a review, or personal conversation where you say, Hey, I think you should check this out. Tell your doctor about it. Anything, anything to help the podcast grow. I very much appreciate and of course supporting the sponsors is why the show is free and plentiful. And also why the Facebook group is also free and well managed. You guys are making that happen with your really kind support. So thank you very much. I hope you enjoyed this episode. I'll be back very soon with another
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