#1494 Drone Attack
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Nick, a father battling anxiety and anger, discusses managing his 4-year-old son's T1D (Modi) with heart defect and genetic implications.
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Scott Benner 0:00
Hello friends, and welcome back to another episode of The Juicebox Podcast.
Nick 0:14
I am Nick and I am from New Jersey, and I have a now four year old that is a type one diabetic. Actually, we found out a few months after his diagnosis that he has Modi, which I know kind of comes and goes through the podcast.
Scott Benner 0:31
Please don't forget 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. AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3 k2, and five free travel packs in your first box. So make sure you check out drink. AG, one.com/juice box. To get this offer, 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 Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. Are you an adult living with type one or the caregiver of someone who is if you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa. This is the way t 1d exchange.org/juice box. I'm having an on body vibe alert. This episode of the juice box podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox, this episode is sponsored by the tandem Moby system, which is powered by tandems, newest algorithm control iq plus technology. Tandem mobi has a predictive algorithm that helps prevent highs and lows, and is now available for ages two and up. Learn more and get started today at tandem diabetes.com/juicebox
Nick 2:30
I am Nick and I am from New Jersey, and I have a now four year old that is a type one diabetic. Actually, we found out a few months after his diagnosis that he has Modi, which I know kind of comes and goes through the podcast with some confusion, and I'm still a little confused about it, too. But my wife and I just had a another son in September, two boys. Thank you. Yeah. We're just a blue collar family living in North Jersey.
Scott Benner 3:01
Awesome. Well, I appreciate you coming on doing this. And I don't think I've ever recorded on New Year's Day before, but here we are so happy new year. Same
Nick 3:08
to you. My wife said, Why are you doing the new year's ago? I don't know. He's very busy. He has a lot of people he records with. So
Scott Benner 3:13
my wife said the same thing to me this morning. She was, why is this happening? And I was like, Honey, the schedule is what the schedule is. I'm like, I send out the link. People grab what's available. She goes, Why? Available. She goes, Why did you not block off New Year's Day? And I was like, I don't know. So,
Nick 3:26
so I actually am pretty tied up at work. Usually, I work for the biggest utility company in the state, okay? I am usually, like, working a lot. So I was like, oh, New Year's Day,
Scott Benner 3:37
right? Yeah, listen, I recorded on New Year's Eve. I recorded, I think I recorded on Christmas Eve? Did I? No, that one got canceled at the last minute the day before Christmas Eve. I recorded three times the day after Christmas I recorded. So you know, it is what it is. You work when you you work when you can
Nick 3:56
work. Yeah, you're finding a lot of people have a lot of stories. Yeah,
Scott Benner 3:59
it's awesome. Let's hear about your story. So how did you first recognize diabetes? What was the process of being diagnosed? So
Nick 4:06
it's pretty, pretty interesting, and it's pretty rare. So my son was born with three heart defects, and I always kind of messed them up, but I just know that they, you know, two of them were not so good, and one was a normal, like defect that is in a quarter of the population. So he had a coronary art arterio fistula, which is where a artery is growing behind the heart. And it was a an extra artery, I believe, is how it's described to us. My wife is really good with this stuff. I'm just really good with the diabetes part. And then he had a flap that wasn't sealed, which is in a quarter of the population, which is not a big deal. And then he had a, I call, I just say, simple, a canal, whatever, that was too narrow, and but all these things, you know, kind of healed themselves over the next year. Were, we were doing a lot of echo scans and stuff like that in the first year, and blood work regularly. And the blood work kept coming back with high blood sugar, and they kept writing it off every couple weeks and months as we were doing it as, oh, he just ate, oh, he's just fighting a cold. Oh, babies have higher blood sugars than regular people. Then it was finally, kind of like, well, you know, let's figure this out. Can we do? And they like, what's doing? A 1c so on the weekend before MLK Day, the Friday before, I took him to a very good phlebotomist in the in the Morristown system, and so he comes back with an 1111, A, 1c and they're like, that's, there's no, there's no, there's no question about this, get to the hospital. So I was like, in shock, because I, you know, I you know, you hear diabetes. You hear type two, mostly. And I was just like, I was like, already crying. I'm like, What? What? The hell. Like, why? Why us? And I didn't even know what I was getting into. My wife was just broken down. My mother was upset. We were I was at our house, and we just had a nice day together after all these months of stressing about his heart, now it's his, his sugar and where it spent three days there it was, was a learning process there, but she my wife, was really good with the calculations, and I was good with the MDI, then injections. So we left after the three days, and when I left there, I just had more so many questions. I was listening to your podcast that that, you know, that those days driving back and forth from the house to get stuff, you know, I found you guys right away, and it was an immediate like, not relief, but immediate like, there's information out there. Yeah, it's
Scott Benner 6:37
only so alone that you can feel before you need something, you know, to to try to fill that, that black hole that comes very quickly. Did they, or have they since? How long ago was this? Now, couple years
Nick 6:48
this is the diagnosis. Was January, 17, 2022,
Scott Benner 6:52
okay, and he's four now, right? Just turned four November into November. So the the heart defect is immediately caught at birth.
Nick 7:02
He spent 10 days in the NICU for hypothermia, whatever, you know, cold. So he was in there for 10 days like they did, they did the regular test. They never heard any murmur or anything. Day one out of the hospital, we go to the doctor, then we have a day three, because it's a two week checkup now. So we gotta go for the two week check up a couple days later with a new doctor, and he hears it and goes, I wouldn't be worried, but you might want to get this checked out. He gave us this recommendation to the doctor he worked with at, you know, his fellowship, or whatever internship, whatever call it. So he we went there, and instantly they, they found the the problems they you know, he was, he was just, uh, like, 13 months old with the blood sugar and that so, but though, but with the heart, he was two weeks old, three weeks old. Okay, so immediately they connected us with Columbia, and they were going back and forth with doctors from Columbia, or the doctors from this practice were involved. It's the three heart defects are, I guess, extreme. The one alone is extremely rare. That Columbia is the place to go in this region, Northeast, and they only see 20 a year.
Scott Benner 8:08
Do they talk about a connection between the Modi and the heart defect at all? He had
Nick 8:13
inter uterine growth restrictions. He came out four pounds, 13 ounces. He was small, but not too small, but he was full 39 weeks, you know, it wasn't like anything like, you know, 32 week or anything so, but we they've never connected that Morristown, um, they had nice doctors, nice people. But we needed, we wanted more information. So we ended up going to Columbia for that as well, through a recommendation of a friend sister, who has type one. And so we go to Naomi Berry, and they were just kind of like, you might think we're crazy, but there's this thing called Modi you might want to we can check it for you for free. Like, oh, it's free. Go ahead, do whatever you guys do, you know. So we did the blood test, actually, no, it was a saliva test. Then they sent it, they came back. Oh, this is he's got a gene defect. And then, like, you can check anyone, your family, if you want. We got checked. And the insane thing is that me and my wife both another one in a billion chance have the same exact defect in the same exact gene. Wow. So we this is why he has diabetes. If one of us only had it, he would put maybe be like a type two, like, so I'm, like, a type two, okay, and my wife had gestational but her blood sugar is fine. When she's not pregnant, it's, you know, borderline, so, but, but that's, it's just, everything is just a weird connection, yeah? So I've never actually asked about the the heart connecting with the blood, because I think the blood is just the Modi caused by the genes. That's
Scott Benner 9:41
crazy. I mean, I've been digging around since you started talking, and I've asked our friend here on the internet, there can be a connection between Modi, which, of course, is called maturity onset diabetes of the young and for people who aren't aware. So there's an h n, f i, or one A and H N. F for a mutation, Modi one and Modi two. There can be a connection between that and the hNf for a mutation and congenital heart defects. So hNf for a mutations have been specifically linked to congenital heart defects. In some cases, studies show that individuals with that mutation can present with structural heart abnormalities, such as septal defects, holes in the heart walls likely due to H and F for A's role in embryonic development. Jesus, that's just like a one in a bazillion chance that the two of you get together, right? Let's talk about the tandem Moby insulin pump from today's sponsor tandem diabetes care, their newest algorithm control, iq plus technology and the new tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto Bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandem Moby gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandem diabetes.com/juicebox when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about tandems, tiny pump that's big on control tandem diabetes.com/juicebox, the tandem Moby system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range and address high blood sugars with auto Bolus. When you think of a CGM and all the good that it brings in your life, it's the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox Podcast is sponsored by the Eversense 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The Eversense 365 is the only one year. CGM designed to minimize the vice frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping, you can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at Eversense cgm.com/juicebox, one year one CGM,
Nick 12:44
the heart issue, he was already, like, considered, like a one in a million chance. And then the Modi, our Modi is, I believe they told us that in Naomi Berry, they have no other cases like him, and they haven't had someone in like, eight years that had the same gene defect like this. So he's got, he has Modi two, and I guess the gene is the GCK gene that's affected. Okay, so, but we all have that. The three of us have it. And then my youngest son, we did IVF to eliminate that, that handled that, we hope. I mean, it's in the hospital. I kept begging them to finger poke and begging. And they were like, he's fine. We're not doing that. We're not doing it. I'm like, I might do it. And they're like, No, you don't have to. But I just keep going back to in the hospital first time when they checked my, uh, Logan, my son, he was oldest son's blood sugar. It was like 90 something, and then it was like 70 something. And the nurse said, Oh, don't worry, he'll never have diabetes, he'll be fine. And I was like, oh, like, that always rings in my head. I'm like, I can't believe that she
Scott Benner 13:45
got a 90 and a 70. And she's like, that's it. No diabetes ever, right? Yeah. And
Nick 13:49
then my other son, my youngest son, is Luke, and he's was roughly, it came out at a 60 something, and then he was down to like, 40 somethings in the finger pokes. And they just kept saying, No, you don't need to. That's normal for a newborn. I'm like, Yeah, but it's not normal for our family. So can you just check and they just wouldn't do it?
Scott Benner 14:06
Well, it's something so well, listen, if you want difficult things done, come to Jersey. It is just, I mean, brutal is the right word, like the randomness of you two getting together and, you know, both having that gene. It's just, you know, I guess it boggles the mind a little. Yeah, you had more kids, though, like, so did they tell you it wasn't going to be a problem, or you shouldn't worry about it? How did you come to that conclusion? So
Nick 14:33
they told us that if we just did the old, natural way, and we would have a 25% guarantee you'd have diabetes, a 25% chance you would have no diabetes, and a 50% chance of unknown combination of, you know, either type one, type two, like, there's just unknown.
Scott Benner 14:52
You're the first person in this is, by the way, this is day one of my 11th year of making this podcast. And I've never heard somebody say they. Asked us to do IVF to avoid the possibility of like. So what? How does that change the possibilities?
Nick 15:05
So the the we're able to my like, I said, my wife is really good with this stuff,
Scott Benner 15:11
make your way through it. I mean, whatever you guys, how
Nick 15:15
it's described to me is, and they can. They took the egg, and they took the sperm, and they looked for the gene, and they removed it. Oh, then it was implanted, once it was mixed together.
Scott Benner 15:30
Oh, wow, a person in a lab picked out who your kid was going to be. I
Nick 15:33
love my son, but I was hoping for a daughter. Of all of the um, all of the eggs that were viable and that were, you know, healthy enough that didn't have that had a 0% chance of this diabetes. There was only one egg that was available, and it was a male. So we kind of said, We'll take the one egg that's the other ones had the other variations of 50% unknown, 20, you know. So, wow. We're like, you know. So we're like, just, you know what? We'll just have another boy.
Scott Benner 15:59
Science, huh? That's awesome. Yes, yes, that's really something. Well, I guess when they people are, like, one day you'll be able to pick your kids hair color and your height or whatever, and like, yeah, that's, listen, that's wonderful, yeah. Or do you think you'll have more? Was it expensive? I'm imagining so
Nick 16:16
it's, it's very expensive, and we're still battling with insurance companies over bills and stuff like that, and now it's this started last year and maybe February, so we're kind of still going back and forth dating my insurance. I didn't cover a penny of it because of our plan, but my wife's did partially. But so in the new year, when we knew that we were going to have give birth, you know, she could give birth, we switched to my insurance. So, because my insurance is better than hers, oddly enough, and she's in the medical field, which is just mind boggling. I've heard that before. So the we, we switched her back to mine. And then there was, there was, you know, back and forth with insurance companies of, oh, this heat, this time happened there. So we just decided that I don't want to have another one. I think the one having one diabetic son, who I stress over every minute of every day I'm obsessed with him, was like having two or three children. Yeah, you know, we're adjusting. I'm adjusting to the second one. What's but I don't know about a third one. She really wants a girl, and I do want a girl, but I do not want to I don't think we could handle three. Just grab
Scott Benner 17:26
one at the mall that looks healthy. I think you'll be fine. Yeah, I think that's illegal. No, you know what? They change the rules every day. You never know. So tell me a little bit about your stress that you have, about the diabetes. So,
Nick 17:36
yeah, my wife is, like, you should, like, talk about how you need, like, you can't get past your anger with it. And it's true, I am. It's a poor me. It's definitely a poor me thing. Because as a, you know, when I thought about having kids, was like, even when I was young, I was like, Oh, I can't wait to be a dad. The whole, like, landscape changed. It's not the same as what you pictured and what you want to do. And you know, you can't just go run around the park the same. You're just, you know, the sugar is dropping the you know, you're going, you're going, you're leaving the house with a backpack full of food. You're, you know, you can't go grab an ice cream cone. And I know everyone's gonna say you can, and you can, yes, you can. But to give a two or three year old three units, to me, is insane. You know what I mean? Like, it's hard that we barely give him, like, one and a half units for that's like a lot for his meals.
Scott Benner 18:26
You're scared of the insulin. So when you try to do something bigger, it's hard to do for you. So I
Nick 18:31
am and I am afraid of the insulin, but I'm not, like, at the same time as I understand that. You know, you give him point one unit, and that's gonna be one unit over three hours, not giving one unit right now, but there has been so many times where he given him one and a half units and he tanks like and and it's just like, doesn't make sense. It's like he had a whole thing of sugar, and he had like, and then he's, you know, so there's just times that are stuck in my brain, where it was he dropped so fast that it doesn't make sense to me that like, oh, is his body still making some is it like, are we so I'm just, like, is the blood moving too fast when he's running around? Like, everything is in my brain is just, it's like, you know, a tornado of, like, all these scenarios where I'm afraid to give them, like, you know, a unit and a half for, like, a, you know, even, like, one of those mini ice cream cones or something, you know what I mean? Like, it's just, I guess I'm afraid, but I'm at the same time I kind of understand what's really happening. Yeah, I always remember what you said is, like, trust the food, you know, trust it's gonna work. And you know that times that comes into my brain when he's at like, you know, 90 and has, you know, whatever unit active, and for some reason he's just dropping, and we poke him, and, you know, he's at 62 or something like that. And then I'm just like, the food's gonna work. Don't overdo it. Don't overdo it. And so you're actually what made me go from the 15 carbs suggested to the seven carbs when he's at, like, you know, 8590 right? And it's like, you know, so it's we just were experimenting through things that I've heard here, and, you know, so it's my wife as. A group that she's friends with, all from the like the Morristown um hospital that they connected us with. She'll ask them about, oh, how do you dose for this? How do you dose for that? And so we, you know, we have that stuff, but it's still just, it's still learning curve for our son, you know, it's different for everyone. So I'm just always nervous to give him too much insulin.
Scott Benner 20:17
I used to do a talk at a hospital up by Rutgers, but the person who would have me up to talk left the organization went somewhere else. But I used to make I used to do it every year, but they always did it during, like playoff season for football, and I was like, oh, and they would do it on Sundays, and I had to watch an Eagles game in the car one time. It was very upsetting, but, but I like going up there and doing that. So when you can trust that what you know is going to happen is going to happen. You're good with the insulin. It's when the variables come in that change it. You're just like, I can't go putting all this insulin into him, because and for you, a unit and a half, two units, would seem like a lot, because you're you can't be certain of it. So as you have more experiences, and as they start to play out the way you expect. Does that make you more confident? No,
Nick 21:03
because, like, His birthday was in November. So my wife's birthday is early November, and his end over. So we already started practicing with mini cupcakes from, like, whole foods that are, like, 13 carbs, yeah? And we were trying, like, the actual sugar on them, you know, icing on them. And we were just like, is he started preschool because he got classified for speech. And then, you know, he's, he's excelling in that. He's doing great. He's a, he's like, a mini genius. He's like, awesome. Thinking about his brain is, like, makes you so happy. Excellent in school. We said, okay, he's gonna be getting cupcakes for school. So let's do this stuff. And now you next thing you know, is he had dinner, and we finger poke him, like, let's, you know, or we check, look at the Dexcom. We give him the insulin off of that, but give, we give him the the food, and we waited appropriate, what we thought was appropriate. And next, you know, he's in the 60s, and it's like, what the hell happened? The experiences aren't always or very often, positive, so it just keeps getting stuck in my brain all the negative Nick
Scott Benner 22:02
Are you pre bowling too long? Maybe.
Nick 22:04
Actually, someone asked us on your Facebook the other day, and it was like, what we do is we do someone else told us this. From there, we do the one minute for every 10 whatever, milliliters or whatever. So it's like, if he's 90, we wait nine minutes. If he's 150 we wait 15 minutes, and we do that, and if it works out for the most part, pretty good, we try to wait 15 minutes as much as we can. But we also know that the pasta isn't doesn't hit him right now. So we don't wait too long with that, you know. So the bread is not gonna hit him right now. So we wait. We don't, we don't wait too long for that. You know, you don't want
Scott Benner 22:39
him to get low before the food comes online.
Nick 22:41
We're thinking about all that stuff, like, like, it's like, so we're not dumb people. It's just that, like, what I think our mistakes are is we're like, like, we gave him his dinner, you know, 15 carbs, whatever, and then we give him his like, 20 minutes later, we go and dose him again. Our 15 carbs for that cupcake. So it's like, well, I guess that was a mistake. We should have probably finger poked or not trusted the Dexcom there, or waited less because he had all that fresh insulin from earlier. So we're still trying to figure that out. We kind of got pizza down, like, just like that. Like, we got a couple, like, like, we you give them a smaller pizza. It's, it's a bar pie, you know, the thin crust, you know, that stuff like that. Like, it worked. Like, we got some stuff. But like, like, the things like, he wants at parties is that's really hard as far as, like, the cupcakes and the ice cream and the juices. Like, forget about we just give them. We give them the Capri Sun. One carb.
Scott Benner 23:32
Yeah, I was gonna say, don't juice. Uh, I mean, you don't want to be drinking juice anyway. But, yeah, I would stick with lower carb stuff as well. Well, I mean, listen, you're getting it. It's you haven't been doing it that long. Like, how long? I mean, it's been two years, right? And he was, how much does he weigh now, I guess is my question.
Nick 23:48
So it's gonna be three years in this three two weeks. So, so just for a picture of us, my wife is like, five four, and I'm like, five seven. Like, that's like, with the shoes on, like,
Scott Benner 23:59
So Nick's, like, I measure with my shoes on. I
Nick 24:03
work. I'm like, come on, you got to go. I got to do my BMI. I'm like, just let me keep my shoes on, you know, it'll help me a little bit. And I'm, I'm a bigger guy. Like, I'm, I'm on ozempic, you know. So I'm right now, I'm about 235 and I was 300 like, last year, yeah, good for you. So
Scott Benner 24:21
you lost like, 70 pounds. Yeah, wow, man, that's awesome.
Nick 24:25
Yeah. So when I was younger, I was 300 pounds, and I went down to like 185 and then I kind of settled off at like 210 and then, like, kids and life, and I just started getting worse and worse. But so my wife is, you know, she's, she's not like a twig either. So she's not big, but she's not small. So we're not like, we're not like skinny people, and we're not tall people. So his height is like 38 and a half inches, and his weight is like 38 pounds. So they consider him like high on the BMI scale, because he's so short and but he's a solid, muscular kid, like he's eats berries all day, like he. Eats a lot of, like, protein stuff. Like, you know, he's very healthy. Like, he thinks, like, animal crackers are junk food, because that's why I tell him, like, this is junk food, like, you know, I mean, so it's the worst you're gonna get kid, yeah. So he's got, we got a whole cabinet full of animal crackers and little Hershey Kisses and little mini Kit Kats and Reese's. We have, we have all this. He gets all that stuff every day, you know, but we try to mix in, like, peanut butter and like, like, the sugar free, cool whi cream in there and stuff. So his weight is, I think, appropriate for our body, body types, you know.
Scott Benner 25:32
Well, is there a possibility? Like, I mean, the reason I asked about his weight is because sometimes, just when they gain weight, it's easier to dose insulin. But like, is it possible? Is there a honeymoon happening? Or you're not? No
Nick 25:43
so I don't know. It's like because he made it a whole he was born with diabetes like he was. He made it a whole year with no insulin. So maybe that was his honeymoon period that kept him alive and out of DKA, yeah,
Scott Benner 25:55
I see what you're saying. What about activities? He's super active sometimes, but not others. He
Nick 25:59
is like a climbing machine. He loves climbing and running around. And he's just a, like, boys, boy, tough boy, like wrestling and, you know, he could find a reason to run around and swing, uh, anything at anybody. Like, he's just, he's like, a maniac. I was just
Scott Benner 26:15
wondering if, like, some of those lows are seeing, if they're like, around, like, bursts of activity. They
Nick 26:20
do come, they do see the drops from that and but I think I kind of try, like, again, I'm always watching the numbers, so I'll see, as a unit, active or something after dinner. And I'm like, All right, calm down for a few minutes, and he'll just be going crazy. And then, like, you know, then you just know, the drops coming, like, in 10 minutes. So, but they it does affect it, but it's just, he's just very active, and he, I mean, he does have his quiet times. He's, he's a different kid. He just found YouTube recently, and he loves watching people make dioramas, like, it's he. So he has his downtime because, you know, I just got Nintendo Switch. We play
Scott Benner 26:53
that occasionally. Like, he sits a little, but not a lot. He runs around. Yeah, it's like, 7525 Yeah. No, I hear you can can I pivot back again to I'd like to hear a little more. Sounds strange to say, but I'd like to hear a little more about your anger. So is it not dissipating at all? Are you thinking of talking to somebody about it? Like, where are you at with that?
Nick 27:13
I mean, my wife had gone to talk to people recently, and I think I've done about like eight sessions, and I yeah, when I'm there, it's all fine, dandy, and it's, you know, I talk and I I'm honest and but if I'm like, really mad still, the problem is that I talk to these people about diabetes, but I'm what I'm doing is I'm educating them on diabetes. I'm not, like, it's not helping me get past the part where they don't understand what I'm talking about. Like, so it's like, I'm telling them about diabetes and I'm talking to them, but they don't really understand
Scott Benner 27:52
well, I mean, a good therapist though, like, should pivot you away from the diabetes portion of the conversation to the anger portion, right? Because they should understand how to deal with the anger. Doesn't matter what it's over. Like, anger is anger. So are you going in there and using it as your opportunity to complain about diabetes instead of an opportunity to talk about your anger? No,
Nick 28:11
I I'm not. I'm like, going in there and just telling, like, what I'm actually thinking. I'm like, I'm not, like, a big like, liar or, like, you know, bring this subject over here. Like, I'm kind of like, what is on my mind is what I'm is on my mind. I'm surprised I'm not fired from my job yet. For some of the things I say, I'm not, like, a good hider of my feelings. Like, you like, you know, when I'm mad, you know, like, but it's just in the moment I'm not mad at like, anything that's happening. It's when, like, last night at 11 o'clock, his pump fails, and it's like, I'm trying to be positive for the new year. And it's here we go, same, different night, and now he's 280 and I'm going, I'm punching the, you know, the counter, just like in anger. And I'm like, why is this? You know, this? It's basically back to the the what? Why did it happen to my family? You know, like, of all the things I ever want in life, I don't have fancy cars, I don't have nice clothes. I don't, you know what I mean, like, I just want to have a happy and healthy family and like, that's like, not what I got. Like, you know, I mean, like, my wife tries her hardest, like, to make me happy, but I'm just, it's in my brain that the problem is not like, anything that like anyone's really gonna be able to I feel like, help me with it's like, I'm too tuned in to, like, I don't know, I'm just tuned to in the diabetes thing. I just can't get past it. Like it's something that's just like eating me alive. Nick,
Scott Benner 29:29
were you angry before the diabetes?
Nick 29:31
So before I had children, me and my brother was like, an angry guy, like he had kids, and he like, became like the mellow guy, and I was like, the most mellow, like, prank guy, like funny, like fun guy, and like everything with the heart and the, you know, you know the problems since I just turned me, me, my brother swapped roles, basically, like I am the angry guy and the I don't, I don't, like, freak out on people for no reason. It's like, I feel like, if there's a reason, like, I. Mad very quickly, but it's I'm not. I was never, I was always a mellow my mother would always say you were the mellow one, like you were the calm one, you were the easy color one, like you got to, like, calm down. But it's just my brain can't calm down from thinking about the sugar like I'm staring at it right now. I just can't stop staring at the sugar like I don't. It's like, he's fine, like he's 130 after lunch and you know, he's upstairs playing, and I just can't, like, stop thinking about it.
Scott Benner 30:24
Yeah, man, that sucks. Can I dig a little more into you for a second? Absolutely, I'm like, like, I said, I don't I can talk about anything in your past, any physical or emotional abuse. No,
Nick 30:34
no. No physical nothing, no, no. I, like my grandmother and my mother were all great. Like, my father wasn't around much, but, like, my grandfather wasn't around much, but like my my grandmother would watch us every day, and she was the like, she was a saint. She was the sweetest lady in the world. I was never, like, beaten or nobody that was a waste, or anything like that.
Scott Benner 30:58
Like, you know, emotional neglect, feel unloved, unwanted, unsupported, anything like that.
Nick 31:04
No. I mean, I think everyone else is doing their job. I think it's my brain,
Scott Benner 31:08
mental illness in your household, substance abuse, anybody separated, divorced,
Nick 31:14
incarcerated, incarcerated. My father spent some time in prison. My My father, obviously, they're divorced, but you know, since I was like, three, but, you know, nothing like my like I said everyone loved me like they should have. I felt like it wasn't like I was like, Oh man, I wish you would have tried harder on me.
Scott Benner 31:29
No, I know you don't usually feel that way, but you have a couple you should make sure you tell the therapist about that, in case you haven't, because it could really impact your anger. I know it sounds crazy, but we did this great episode, Erica and I on these key reasons why people have problems as adults. Those 10 they're called the aces. Those those 10 indicators are are very consistent with having issues as adults. So, you know, you should get somebody to go through it with you, because it's not going to stop, right? Like, because now you have that diabetes is a legitimate bad guy, so you're not going to have any reason to, like, you know, forgive it or let it go. That's why I think the anger keeps going, because it feels justified to be mad, but you're going to be real close, man like this, between you and me. You're going to be real close to your kid seeing your anger about diabetes is anger about him. And then that's not you don't want that, you know what I mean, and and it's not an easy thing for the kid to deal with. And then you're going to end up giving them one of the aces. And then blah, blah, blah. I know it's, it's a heavy lift, but I would, I would put a ton of effort into that if I was you, because I think it's going to help you. I mean, you're not going to be healthy or happy if you're angry all the time, and the kids definitely is going to see it as him at some point. You know what? I mean?
Nick 32:55
Yeah, I definitely, I try, I don't I mean, he hears it, obviously he hears it, but like, I try my hardest to not blame anything on the diabetes or him or the diabetes. It's just so I definitely hear what you're saying, yeah. I try my hardest to not put any blame on him or on, you know, I try, even with like, the youngest one, I'm like, oh, yeah, you know, I try not to blame it on, like, you know, I can't do this because I have to help the youngest one. It's like, Oh, give me one minute. I got to do something or, you know, so I try not to point the blame at them in any way, just because I can. I was kind of always pictured that like, he'll hear this and he'll get mad, you know, I
Scott Benner 33:30
don't imagine that. You do. I want to be clear, like, but it doesn't have to go that way for them or to feel that way. So, like, as an example, like, sometimes you'll see like, people have a baby, like, very young, and you know, it's on, it's unplanned, and the baby changes the course of their life. And then over the next 20 years of growing up, one of the parents clearly doesn't like the way that their their life went. But it doesn't mean they don't get up every day, love the kid, do the things are supposed to do all the stuff, but at some point the kid realizes, if I wasn't born, this wouldn't have happened, and they're unhappy because of the direction of our lives, and then they see their birth as the reason for that. Like you'll do all the right things and say all the right things, but if you're angry, the kid's gonna at some point think it's their fault. You don't have to tell them it's their fault, or to screw them up. Unlike my dad, who was nice enough to tell my mom that I was the reason he left, which I really appreciate, it only took me, like, 30 years to get through that so awesome. I mean, in my heart, man, like, I know you're a good guy, and I know you're not like, pointing at that, at your kid, I'm just saying, I think it resonates through the house. And kids can feel it as their fault. That's all. It's not gonna be easy, but I think if you go into counseling, stay with it, make sure they know about your background, so they can help you pick through you know you should be able to do something about it. I mean, has anybody talked to you about, like, actual physical ways of helping with stress, or. Like a punching bag. I mean, anything, however, you can get it out. You know what? I mean, yeah, scream and go on pillow.
Nick 35:05
No, no at the time. Like, I said, Well, you just talk about what's like on our minds at the moment. But like, if I'm not mad, like, I'm not thinking about, like, oh, this time I got mad. Like, let me tell him about this. Like, so, yeah, I guess people at work, and some people I work, I know, get like, how I feel and get mad, like, but the therapist, like, I spend more time with people at work than I do. You know that 45 minutes with a therapist? You know, so tough
Scott Benner 35:29
it really is. It's hard to like therapies. You know, it's a long haul situation, and if you get a bad therapist, you won't even know it right away. That's the other part that sucks. You know, as you put in a ton of effort and maybe don't see a return or not see a return. Does your wife have that kind of response? Like, what's her response to the diabetes? I
Nick 35:46
don't know she should play, like, poker or something, because she's definitely better than me. Like, she's the like, person that will negotiate the car sale down, and I'll be like, I'll pay full price. You're right. You know, she's like, really good at, like, hiding that stuff, like, in the moment, like, but she definitely handles it a lot better than I do. I think in the like, panicky moments, I excel, and then after is like, when I'm like, shaking, you know, I mean, like, and then she's like, kind of like, doing the shaking when I need her to, like, step it up and, but she's like, you know, so she that's how I feel, but she's like, she does what she has to do. She handles two kids, like, she's home right now. She does both kids, like handles their, you know, meals and finger pokes and Dexcom and pump changes and all that, if I'm at work. And so she does great, but she does, she does really good. Let
Scott Benner 36:28
me ask you a question. When she tells you what you're doing wrong, what does she tell you? Maybe I don't hear it. I would listen. They're wrong. I don't want my wife to
Nick 36:38
hear this. Okay, but no, she's she's gonna hear but like,
Scott Benner 36:41
often you just need another person to see you and to, like, make an assessment. You know what I mean? Like, so if she has an assessment about, like, your angry moments or the adrenaline, or the the the anxiety that you feel, like I I would try listening to what she's saying and try to apply it, because I'm sure she's got a view of you that you don't have of yourself. And I feel for you, man, like I've gone through everything you're talking about, like I grew up I was freaking angry as a kid and as a young adult, and I had kids, and my wife is the one who was like, Hey, man, you gotta calm down like, you know, and like, and was able to point it out to me when it was happening, and I'll tell you the first 50 times it happens, and it's pointed out to you, it's not exactly easy to just stop and absorb that you're overreacting or, you know, whatever. But eventually, like, I really, I thank her. She's, you know, really saved me in that regard. So, I mean, I know it's doable.
Nick 37:38
She'll tell me to just like, it's not like, so do the it's not a big deal. Just give them the juice. It's not a big deal. Just give them, you know, just give them the insulin. And, like, he'll come down and she does all the right things. But my brain is just like, in a different level, as far as, like, you know, is he getting sick? Is the pump working? Is, you know, whatever, like, all the things will pop my head, or is he getting the stomach bug? Is he getting this, like, you know, whatever like correlates with that, whatever the trend is, I'm like, thinking like, so, but like, so my brain just, I hear what she's saying, and it's like, Just give him the juice sale, drink it, give him the fruit. He'll eat it. Like it's he won't stop eating. In fact, you know, so just like, he'll be fine. And she says all that stuff. And I know most likely, or, you know, 99% of time, He will be fine. But I'm just sorry, like, like, last night when his pump, when he failed, and he was at 280 which is, again, not, like, insanely terrible, but, like, for two hours, but I'm already taking out the hospital bag and stuff like that. You know what I mean? Like, it's
Scott Benner 38:36
so, what happens there? Like, so, because I, at first I thought maybe you feel like you're failing, but it's not that, like, you go right into crisis mode all the time, right? Yeah,
Nick 38:43
yeah. I think that I I'm already going to, like, let me prepare for the worst and hope it doesn't happen. Well, Has it ever happened? So, I mean, we did end up in the hospital two or three, probably three times, but they're only for like, a couple hours where they did
Scott Benner 38:57
you need to be there, or did your overreaction put you in the hospital? No,
Nick 39:01
I think, I think we need to be there. I don't believe I don't want to go to the hospital. Like, okay, what? You know, one time it was down the shore on on Fourth of July weekend, and he was throwing up, like, multiple times, high blood sugars, yeah, so we, I, you know, I was on call at work, and I actually told him, Hey, you know I gotta, I gotta, I can't come in. I got to go to down the shore. And they're like, you gotta go down the shore for, I'm like, Yeah, it's like, legit. Like, it sounds bad, but like, and then like, so I shot down to like, LBI hospital, and it, you know, and they were poking them and needles and fluids and running tests and and it was just a common cold, but he just was vomiting and just couldn't keep sense, yeah, so, and then, you know, a couple of times where, just like, he's got high blood sugar, he won't drink any water, like, I'm giving him the insulin. It's not coming down, you know. And so we go and we get the fluids in them, and then they throw their tests, and it's like, yeah, just common cold and like, so, you know, it's
Scott Benner 39:55
so, but my point is, so those times have been around illness. Is that, right? Yeah. Okay, so then last night was an illness. It's just a it's just a site failure, yeah?
Nick 40:05
But my brain's like, I don't, I don't know what it is. It could be illness. Who knows? I mean, it's we saw how many people last week? And it's like, is he, you know,
Scott Benner 40:13
Nick, I'm gonna say something to you that if you listen to it will change your life.
Nick 40:18
I'm listening to all of be real quiet for a second. Worry
Scott Benner 40:20
is a waste of imagination. When you're worrying, you are making up stories about what may be without any knowledge if they are or not. And so you are just making stuff up in your head and then deciding to treat it like it's real.
Nick 40:35
You know, you've you've said plenty of things that stuck with me over the past couple years, so I'm really praying that it sticks with me, which sticks
Scott Benner 40:44
to you, like you are making that up. That's what's happening. You know
Nick 40:49
what? Like when you said it like I felt like a pressure come off my shoulders. So maybe it will stick. I'm not
Scott Benner 40:56
going to tell you that there's not actual things to worry about in the world, right? I said this to my kids, you'll appreciate this because of where you live. Two weeks ago, I'm in the kitchen, both of the kids are like, Hey, Dad, seriously, we gonna die. What's with the drones? Right? Like, so they're both panicking because they're on, you know, they both have social media, and they're looking and I'm like, listen to me. I'm gonna tell you something about the drones. Don't think about it again. Like, first of all, the planet's been here for a bazillion years. It's still here. We've been able to blow each other up since the 40s. I think the 50s. Nobody's done it yet. And I said, and if it happens, the great news is your skin's just gonna melt off your body, and you'll never know. So what are you worried about? Are you worried about a thing that you can't possibly impact anyway, right? And and if it does happen, will be a split second, you'll never even know what happened. So I said to them, like, that's I said to both of them. I'm like, you both drive daily. Do you worry that your car is going to crash into something and that the gooey bag of water that you are is going to pop? And they go, No. And I'm like, then why are you worried about this? I was like, because it's the same thing. It's a random event that probably won't happen, and if it does, you're really not going to know when it does. They were just like, making up. Well, I've heard that the drones are up in the sky looking for dirty bombs. I'm like, okay, my son, at one point, goes, Do you think we should move west? And I went, what? And he goes, Well, if this happens, you're gonna wish you did. And I said, No. I said, because I own this house, and I was like, and I have a job and I can't leave, like, if this is what's gonna happen, then this is our path. But the truth is, that's not what's gonna happen. And you're doing the same thing, like you're making up, like you're like, Oh, the drones are coming from us. Like, no, they're not. And to kind of draw this picture out a little farther, the social media is making them scared, more scared of the drones, right? And you're using the Dexcom information as the thing to keep you upset. So in my opinion, set alarms and don't look at it unless it beeps, because, yeah, you know, I mean, put the alarm wherever you're comfortable with your low alarm. I don't know where that is. If it's 80, if it's 70, if it's 90, I don't care. Like, right? Like, put that alarm there, and put a high alarm at a spot where you know that you can make an adjustment without experiencing a very high blood sugar. I don't know what that might be like. Maybe 150 would be a good for you to start with, so you're not constantly looking right. And if that thing doesn't beat Nick, then you don't look at it. And that'll teach you to relax. Because I imagine the way you're talking, it sounds like you're good with insulin. It sounds like you you understand things like, right, like you probably don't leave that range 70 to 150, that often to begin with, do you?
Nick 43:39
We're pretty tight. I mean, it's like, he's not like a low A, 1c, do you think he's a 6.2
Scott Benner 43:46
or 6.3 right? Well, that's an average blood sugar in, like, the 130s
Nick 43:49
Yes, he's is like, is like 128 to 135 is a normal a couple days stretch. They're, they're extremely happy at the nail Barry for his where he is. But when he hits, like, I have my alarm set at 180 my father in law gave him that same advice. He goes, just send it instead of 200 said at 180 and I go, yeah. So I mean, when hit 180 then I just get mad when I hear the alarm. But, like, so it's like,
Scott Benner 44:12
mad at do you think you're mad at yourself? Do you think you're like, What did I do wrong that let this happen? I don't
Nick 44:18
know what I'm I think I just don't want I'm just nervous. It sounds stupid, but I'm worried. Like, he started, he was born with this, and I remember hearing that like, you know, diabetes takes off, and after 13 years off a person's life, and it damages this stuff after so many years. Yeah, listen,
Scott Benner 44:35
you're talking to the right guy. I don't think you sound stupid at all. I'm right there with you. Okay, so if you're doing a good job of staying in that range, then the real thing to teach yourself is, if it's not beeping, I'm not looking, maybe the drones are in the sky neck, but it doesn't matter, you can't impact it. So like, if the 70 is turning into 80 is turning into 90, that goes all the way to 130 and that takes four hours. And. You're not involved with diabetes for that four hours, maybe your cortisol levels can drop for a second. Like it's possible you might just be in fight or flight constantly, and Dude, that's gonna make it harder for you to lose weight. It's gonna make it harder for you. You said you have type two. Uh, yeah, yeah. So that's gonna make it harder on you. And then, you know, you're just gonna have a different thing to worry about. You're gonna get unhealthy, and then you're unhealthy, and then you're gonna be like, well, who's gonna be here for my kids? And you know what? I mean, like, I'm not gonna say, like, put the air mask on first that before you help others, because it's just, I mean, been said 1000 times, but like, You got to be okay too, you know,
Nick 45:36
yeah, I hear you, yeah. Like, yeah. I mean, I am happy with his when he's in range. I'm like, like, nothing's a better feeling. But like, when he goes over or under, it's just that those emotions, I just can't keep him under control because I'm just like, the under, like, you know, I know that the under, the damage takes a lot longer than the, you know, like, it's not gonna but he's very rarely. He's had a couple experiences where he was, you know, under, you know, 60, like, maybe, like, one, one time we had to call the ambulance because he was shaken so much, and he was, his Dexcom was in the 40s, and then it was down to, like, low. And you know that, you know, what'd you do to get him back up? Yes, we gave him, like, 10 ounces of apple juice, or some crazy number, and then he was up at 300 for a while. And then, you know? But I was just happy he wasn't low anymore. So I was like, you know, the grass is always greener, I guess. Yeah, it's just, like, certain situations, I try to be realistic. Like, yeah, okay, he's, he's not 39 anymore. So let's, you know, it's okay that he's 300 for a little bit, you know. But it's just that, like, I feel like, if he's not in that range. I'm just worried, like, how long? Okay, you might not be in the range for an hour or three hours or five hours right now, because whatever reason, pump veil, you know, getting them down, but that five hours today, and then three hours tomorrow, and then seven hours the next day and one hour, you know, it's like, it just, I feel like it's just gonna add up. And,
Scott Benner 46:56
listen, it probably will. But with the attention to detail you have on this. It's not gonna happen like, you're going to figure this out. Like, that's the part you're not giving yourself, like, it's only been a few years and he's little, like, so like, you'll get better at this. You'll figure this out. And it's, it's your you have the most important thing of when I talk to people and I try to decide in my head, are they going to be okay or not? Like, you have the most important thing, the reason why I know your kid's going to be okay. You care and you're paying attention. Now you got to make sure not to care or pay attention so much that it ruins you or your relationship. Like Nick, I have this great advice that I can never give to the people in my family, so I'm going to give it to you and anybody who's listening who feels like you, it's going to feel so good, because it's not a thing I can say to my wife or anybody else, but you gotta Calm the down. Like, like, Oh my God, just one time without repercussions. I'd love to look at a couple of people in my life and go, you gotta Calm the down. And I know it's not as easy for some people. Like, do you have anxiety? Maybe
Nick 47:59
I do have. I think, I don't know what I mean. I guess children triggered the depression, anxiety, you know, need for meds, but I rare. I rarely ever take them. I keep them always with me, like in my little, like, key chain thing. But what they give you, what they give you, uh, you know what it's it took like, three, like, two or three doctors to, like, actually find one that was like, I don't want to take one every day, right? I want to take one where I need it right now, because I don't need it every day. I don't every day. I don't need
Scott Benner 48:23
it. Is it a thing you can take every once in a while, or just a thing that, if you don't take it every
Nick 48:26
day, it doesn't work? No. So this is great. I The doctor gave me so he goes, it's, uh, I forget the name of it, whatever I ended I could always message you, but it's, it's like, it's like, it works for eight hours and then, or six hours, and then it wears off. You don't need it. If
Scott Benner 48:38
you don't have propane, that's the top of my head. Propanal Law, prop what's it called? God damn it.
Nick 48:45
Uh, let me see. I can look at my I might have a picture of it on my phone, yeah, but I could. We'll figure
Scott Benner 48:49
it out. Task, yeah? Because I feel like I know what this is. It's okay.
Nick 48:55
Let's see. Uh, no, that's for his that's for vomiting, yeah, I was taking a picture of his medicines. And, like, it's stupid, it's ridiculous. You know, if I find it, I'll let you know, yeah, but it's like, literally, it's, it's, I don't need to take it every day, because that was always another thing. It's like, oh, take it every day for a month for it to start working. And I'm like, I don't want to take company every day. Like, that's why I don't do the the like, metform and I do that ozempic, because I'm gonna forget I'm busy. I can't, you know. So, like, even though it's epic, I forget for three days after, you know, but this is if I need it for this next, you know, couple hours this, I'll pop one in, take it. It works. Sometimes I'll get anxiety going home. Like, if I've had a rough couple days with him, I'll take it coming home, and then I'll get home and I'll be mellow with it. And I'll, you know, I just don't want to take it every day. If, like, I
Scott Benner 49:42
hear you, Xanax, Ativan, Klonopin, none of these. Volume, no,
Nick 49:47
no, strong thing. So, yeah,
Scott Benner 49:52
so, but I'm not for, like, just taking pills to take pills. So, you know, if you don't need to take something, you don't need to take something. If you're kind. Constantly have that adrenaline going and that cortisol is up, and your fight or flight's always on. I mean, like you're grabbing the hospital bag for, like, a high blood sugar, like, I would think that anything that would help you find a lower, calmer, like, you know, place to be, generally speaking, maybe if you could get down to that spot, you could re learn how to react to things. I don't know. Maybe you'd stop again and just, you know, would come right back. I have no idea, but obviously that's, I mean, you're not unaware, but obviously that's the thing that's messing with you more than anything. Are you Irish? No, I'm Greek and Italian. You're Greek and Italian. Jeez, Greeks are supposed to be mellow. What happened? Yeah, I'm
Nick 50:40
telling you, I was. I used to mellow. I was fine.
Scott Benner 50:43
Everybody thought I was Greek, until they realized I wasn't. You do look a little Greek? Yeah, when, uh, I used to say, because I'm adopted, uh, Greeks thought I was Italian. Italians thought it was Greek. Everybody else thought I was Jewish. And then that's just how it would go, you
Nick 50:59
know, I get this. I get the same thing about me. People actually, Are you Jewish? I go, No, it's a bad thing. But
Scott Benner 51:03
Nick but last year, at Christmas, I don't know if I've told this on the podcast or not, I was in the city for a couple of days up in New York with Arden and my wife, and we were just, we just spent a couple of days in the city, and we were like seeing shows and wandering around and thrifting, and obviously we were doing stuff hard and wanted to do and the Orthodox community was out in like force giving out menorahs to people on the on the street. Maybe I forget what they were doing exactly. I can't remember exactly what it was, but if I didn't get approached a half a dozen times, swear to God like you were walking down the street, and every four blocks, somebody was like, shalom. And I'm like, oh, here, okay. Are you Jewish? And I'm like, I'm not. And then they get that look on their face, they're like, Oh, I'm sorry. I could have sworn and I was like, no, no, it's okay. Every it must happen. So I swear to God, it started becoming a joke. Like, big we were walking down the street, you see, like, a group, you know, they were just out, like, doing nice works Kelly or Arden would be like, Hey, you're gonna get enough. Like, and I would turn it down very graciously afterwards. But it was, it was hilarious. Nevertheless, I don't know, man, like I feel for you. Obviously I don't have the answers. I make a podcast, not the right one to ask, but I just wanted you to be thinking about the things that I've heard from people over and over again, and that I've experienced personally. So hopefully you can, you know, make some inroads with it. Because it sounds to me like you guys are doing really well diabetes wise. Yeah,
Nick 52:31
yeah, we're, I mean, we're definitely, I mean, um, I would like, because a 1c even better. But the thing is, I have to trust the insulin more to get it better. And I have to, you know. But I just, I'm okay. Where, if he stays at 121 30 all day, I'd be happy in a way, you know, but, like, until I wasn't. But, you know, I he's stuck it. Sometimes you get stuck at 141 50, and I'm like, what the is going on? Like, you know? So it's, I'm hard to please, I guess I'm just, my thought is, I need to be perfect for him. I need to extend whatever I can, you know, on his body for for as long as I can for him, until he takes over and disappoints me or makes me, you know, happy. So
Scott Benner 53:12
like Man, if I was you, I'd readjust your targets in your mind for happiness. I think then you'd be able to relax a little and then put effort, like more targeted effort, into doing what you wanted long term, like you got to realize. And I'm not saying this was right, but you know, when my kid was four, doctors were telling me it was okay if their blood sugar, her blood sugar, went up over 300 as long as it came back down again. And that was every day, every meal, because I didn't know you're making me shake stop saying stuff like that.
Nick 53:43
But I figured out the the medicine. It's abuse. Barone bus Barone, it's spelled. It's used to treat anxiety disorders in or in short term treatments for symptoms of anxiety, b, u, s, p, i, r, O, N, E, it's a short term acting anxiety pill, brand name, juice bar,
Scott Benner 54:03
yeah, baby, yeah. So that that, does it work for you?
Nick 54:07
Yeah, I feel like it does. I mean, I might need to pop him right now. Like, right now, he's dropped in like, 25 and, like, the last two updates. So, like, I'm like, my wife is just doing
Scott Benner 54:16
well. What's his blood sugar right now? 103, and he's dropped 25 points in the last listen to 120 you're looking at his blood sugar while we're talking, and your wife's with him.
Nick 54:28
Yeah. So I have trust issues, not like, anything outside of like that. Like, I don't trust my just, like, don't trust my wife for, like, what our marriage and stuff like that, it's I don't, you know, I just his life. Nick,
Scott Benner 54:38
can I give the advice again? No, I can't. You got to Calm the down, man.
Nick 54:43
I know she's got, I know she's got it. She's got, like, you know, we were always got, like, fruit clean and like, bottles of juice ready and so, oh
Scott Benner 54:50
Nick, oh no, you're breaking my heart. Now, I
Nick 54:53
know it's like, I'm terrible. I'm a terrible person. No, you're not a terrible person. You're worried now, just fishing for compliments.
Scott Benner 55:01
You're a handsome boy, Nick, don't worry about
Nick 55:04
cutest in high school. Did you really? Yeah, but it had to be a joke. We also voted the guy with bad like baggy eyes as, like, best eyes to themselves.
Scott Benner 55:15
I wish everybody could live in New Jersey for a little while.
Nick 55:18
Yeah. So you know the drone, the drone thing, actually, I'm 10 minutes away from piccati, where it all started. Yeah, yeah. So, like, I was, when you said that, I was like, Oh God, these drones. How stupid. Like, I guess a big joke. Now, when I'm at work, I'm like, Oh no, look, there's a drone. It's just like an airplane.
Scott Benner 55:32
I'm sure somebody saw something. I'm sure then it got on the news, and people were like, I have a drone. I'll fly it and screw with people. And then, you know, and then that happened, and then people started taking old videos of other stuff and saying, oh my god, I'm seeing them here. Like, before you knew it, there was this video going around where people are, like, there's eight lights in the sky, and they disappeared in the ocean. And finally, someone came along and said, that is the end of a Christmas display I saw three years ago. So people are just like, using video to, like, you know, pump up their social media. They're looking for clicks at some
Nick 56:03
point, yeah? Like, I mean, I left my house the weekend, the week it started, I went up to target, and I was like, I did see a, you know, regular drone that, you know, like you buy at the store. Like, I'm like, oh, so there was one. I'm like, This is what people are seeing, is driving down the like, it was going along the river, yeah. I'm like, you know, that's the only drone I saw. Like, you know, I you could, you know, it's like, so I don't know where all these videos are coming from.
Scott Benner 56:24
Listen, I have a little hobby drone. And, yeah, first of all, they're awesome, and they go way farther than you would think they would. And Arden, you know, the one day, I shouldn't, I don't know if I should tell this, but, but like, you know, the one day, she's like, seriously, like, are we gonna be okay? And I'm like, Arden, everything's gonna be fine. And her friend went out for a walk, and as soon as they left the house, I went, got the drone, put it up in the air, found them on their walk, hovered over top of them, and I just followed them very slowly for a while, and then I think they figured it out pretty quickly, but and then I took a photo of them, because you can take pictures with it. I took a photo of them, and later I sent it to her, but I was like, see this? They are following you. And she's like,
Nick 57:06
they know what you're doing, projecting your blood sugar. They
Scott Benner 57:08
know what you're doing. You're walking, trying to find healthy, uh, activities. Do you walk to you? What do you do to relax? Man,
Nick 57:16
analyze blood sugar.
Scott Benner 57:18
You don't like you watch go for a walk. You
Nick 57:21
I watch whatever he watches. I don't really do anything as far as fun and Nick
Scott Benner 57:26
I used to do before you made these kids. No, I
Nick 57:30
mean, I wasn't like the most fun person. I mean, I'm I'm funny, but I'm not like the most fun like, I didn't like, go, like, shooting, or, you know, fishing, or anything like that. Like, so it's I was never like, I never really had
Scott Benner 57:40
hobbies. Like, yeah, but you got to do something. I'm a loser
Nick 57:43
that likes to watch wrestling, you know. Like, that's about it. When's the last time you and your wife went out? We went out. So my mom came over last night. We ran and got sushi real quick. But that's about, you know,
Scott Benner 57:53
what were you out there the whole time going? We got to get back because of diabetes. No.
Nick 57:58
So she had the, she actually had the Dexcom up on her phone. I just kept, like, kept checking in. She said, Stop. It's fine. It's like, 123 I'm like, I know, but it's it was open. So I kept looking. But like, she was gonna, you gotta figure out a way to stop watching the numbers. And I go, Yeah, but like, it's there. So I'm gonna look like I have my watch. My watch alerts really goes under 100 and over 200 but my phone goes off and he's one 100 or 95, and 8180, so, like, it's always, like, there, but like, you know, it's stupid. Like, I'm like, ridiculous. Like, I have the sugar pixels, which are the greatest thing. And like, you should give me a free one, because I bought nine of them. So use my link by any chance. I did the way I found it. So
Scott Benner 58:42
this nickel. When you buy one of those
Nick 58:45
good you're making. You got a whole dollar. I got one in my son's room. I got one of my other son's room. I got two in my bedroom, one of my wife's side, one on my side in the
Scott Benner 58:54
kitchen. You guys are sleeping or No, is the house like gonna glow? So
Nick 58:58
the only one, yeah, it is. It's, I actually use one in that my youngest son's room as a night light, because I put it in full brightness so but like,
Scott Benner 59:06
wait a guy, you have a sugar pixel in your youngest son's room for your older son?
Nick 59:12
Yes, because I want to know when I'm rocking him to sleep what His number is, because I'm insane.
Scott Benner 59:16
Oh yeah, no, hey, I'm gonna agree with you. I've been arguing with you for 45 minutes, but you're insane. It's okay.
Nick 59:24
Don't know. I live by that number. I don't know how to stop it, but you told me to stop worrying. I don't
Scott Benner 59:28
think you're the only person who finds this. For every person I've met who's like, Oh my God, these, these CGMS are awesome. I've met a person who said, you know, it really dug into my anxiety, and it's like, the worst thing in the world for me, the thing I can tell you, and I don't know the pathway to this, but I believe that if you allow yourself, that you won't feel like this forever. But you have to let yourself, you're holding yourself in this place right now. Does that make sense? Yes,
Nick 59:55
because my even my dentist, like, said, like, you carry this with you too much. Like. And that's my dentist, so I see twice a year, like,
Scott Benner 1:00:03
do you grind your teeth? No, no, she
Nick 1:00:05
because she's like, because it's funny. Like, it's not funny. But, like, I'm telling you, whenever I leave the house, like, there's something that goes like, like, for like, not for like, work, it's like, but for like, if I I remember when I went to, like, I had a science mix, I went to the N T and, like, now next thing you know, like, I leave and like, my son's sugars drop. And he's like, going down like crazy fast. And I'm like, he's in the 70s and like, which is like, Yeah, I know it's not good, but for me, that's not good either, and it's not bad, but it's not good for me there. But so she I start just like, I was so mentally drained, I just started crying at the antis. And she's like, are you okay? I'm like, Yeah, my son sugar is dropping. I was like, like, and then, like, whenever I leave that, I go to the dentist. Next thing you know, I'm getting cleaning. And now my watch is vibrating, my phone's going off like, it's like, and I'm talking about diabetes, or my dentist. Now, through the splashing of my eyes, I just, it just follows me. It won't leave me. Could your wife take this from you for a week? I wouldn't let her. That's the problem. We can't
Scott Benner 1:00:58
say there's a problem and then not be willing to try an answer, though, you got a letter, you know. I mean, just tell her for a week. Like, try to disconnect me from this for a week to see what happens. Yeah, like, so or you gotta find a thing. Nick, like, you need a thing to do.
Nick 1:01:12
Yeah, you're right. I But thing is, I'm my family, that while it drives me crazy, is the one thing that makes me happy. Like, it's like, it's like, I want to spend as much time with
Scott Benner 1:01:21
them as possible. I appreciate that. I think you're a good guy, but like, I'm going to be harsh for a second. Like, the thing you're trying to do to help them is going to hurt them. Like, your wife's going to get sick of this. Your son's going to get sick of it as he gets older, and you're going to be sick in general from the worry your good intentions are going to lead to bad things. He's going to have great blood sugars, and everybody's gonna hate each other, and you're gonna be dead.
Nick 1:01:42
Like, I'm saying you're okay with messages getting across somebody, you know, I'm hoping the person get across to somebody and me eventually. But like, I hear you, but like, I just, I'm just obsessed with, like, that easy I cannot break my focus on on his health. I don't know why. I just, I tried
Scott Benner 1:02:00
the rubber band on the wrist thing. I know a version. Like, every time you think about the diabetes, snap the rubber band on your wrist, or something like, like that. I've seen old ladies stop smoking that way. Yeah, I don't know if that worked. It was the 70s, but it worked. Did we just have someone come in the
Nick 1:02:17
room? No, that was just me doing an old lady. Oh, that was you being an old lady.
Scott Benner 1:02:22
Nick, Listen, I'm not a very exciting person. Outside of that, I make a lot of podcasts. But I mean, for Christmas, for example, like, in about 10 days, Arden's taking me to a glass blowing place, and we're gonna, like, we're gonna sit for 90 minutes while they show us how to make a bowl, and then we're gonna make our own right, like, so I know you have little kids and you can't do the same things with them, but like, something like that that you should, it's only, you know, I think it's three hours, right? But like, you go somewhere and you just can't focus on anything else. You're gonna focus on that. Like, that's a thing. Think I've mentioned this on the podcast before, but for the last three years, for Christmas, I've, I've never, I don't know if this is a thing people would like find weird or not, I guess, depends where you live or who you are, but I've never held a gun in my life, and I said I would just like to go, like to get a gun safety training, and like, shoot a firearm. Like, I don't want to keep one. I don't want to own one. I just want to do it one time, just to do it. So my son got me that for Christmas. He and I are gonna go together and do this, like, half day thing together while I'm there. I'm never gonna think about Arden's diabetes. You know, she's older, it doesn't need to be said. But, like, if she was younger, I'd say to my wife, look, I'm gonna go do this thing. I can't be in charge of this. You're gonna have to do it. And that would be the end. Like, you don't need, like, and then you don't think about it again, because your wife's going to handle it. Like, right now. Like, she's not ignoring the fact that your kid's blood sugar went
Nick 1:03:50
down. No, she caught it. She it's already leveled off at 104, it's not like, a problem. It wasn't
Scott Benner 1:03:53
just a problem. It was awesome, is what you're telling me. Yeah, she does
Nick 1:03:57
a really good job. Like, you know, like, occasionally she'll get, like, an overreaction, but like, I'm guilty of that too. So like, she's, she does a great job. I mean, honestly, she's 7060, 70% of the time, the one that's handling the blood sugar. Because I'm, I work a lot like so that's another thing, is that I'm so far away sometimes, sometimes I'm an hour away to get even to my work and then to drive home, and, like, in an emergency, but like, at that point it's already handled. But like, my brain is like, I'm so far from my family I can't help like, I feel helpless. That's a lot of times where I'm at tube. Mental is like, I'm I'm up in West Milford. To get to my work is 45 minutes or an hour. Then to drive home is our half hour. I'm like, what the like. Just hope nothing happens today. Yeah,
Scott Benner 1:04:43
not listen, man, I hear you. Do you have any auto immune issues? Auto
Nick 1:04:47
immune? No, I been fairly healthy my whole life. I mean, my wife, too, she doesn't have anything. Knock on wood. I don't want to say it's all been Logan, but it's he's been the introduction to a lot of these. Kind of product. No one in my family has had, knock on wood, cancers, anything like that. So I haven't been around these chronic, long term things ever, for you people being sick too, right? Yeah, I'm not used to that. I'm not used to like, someone needing constant attention, or, you know, checkups, or, you know, every couple weeks or months going somewhere, yeah? So it's, it's, it's new. I mean, I'm, I guess my family's fortunate, and here's the pity, not me, you know, so Nick,
Scott Benner 1:05:28
if you want to feel fortunate for a second, just remember that, you know, 100 or so years ago, your son would be dead. Now, I know, right? And he's not. He's gonna grow up and live a perfectly normal, happy life. Yes, this very likely won't even shortness life because of this great technology that we have now, the understanding of how the insulin works better, new insulins that'll come, new technology that you can't even imagine that's coming. Still, it's a different world now for diabetes, there isn't a lot to be worried about right here. No, it just sucks. I mean, it sucks, and you didn't want it and everything. But I was online the other day. I don't go on my personal like social media very often it says I don't have time. I realized that this woman I know who lost an adult daughter a few years ago, just five kids, and she's an older woman, she lost an adult daughter to a cancer a handful of years ago, and then one of her other adult daughters died unexpectedly last week. I don't know, man, like, there's a lot of bad things that can happen. There's not a lot of bad things that happen that you can control with insulin. You know what I mean? Like, there's of all the bad things that could happen. This isn't the worst. Like, I hope it brings you some comfort to know that there are times when I'm speaking to people, overwhelmingly, who have more than one medical issue, and I'll give them the like, Sophie's Choice. I'll be like, Hey, if you could get rid of this, or diabetes, this or diabetes, whatever, they so infrequently pick diabetes. Like, if they have more than one medical issue, they almost always wish away something other than the diabetes. And they'll say things like, Oh, the diabetes is manageable. I know how to do that. Those are the kind of like, almost like, flipping answers like adults with serious perspective about illness will have over and over again. They're like, well, if I'm gonna keep one of these, I'll keep the diabetes. Like, so, yeah, you know, I mean, you're in Jersey. I don't know if you're like, more of a New York fan or not, but you know, the GM of the Phillies has been on the podcast a couple of times. He played nine years in the MLB with type one diabetes, and you know, he's the GM of the Phillies now. And when I asked him one time if he ever thought about not having kids because he had type one. He didn't even understand the question. Like, he didn't even, like, go, oh, because they'd get it too. And then when I led him to the question, he goes, No. He's like, I know how to take care of it. They'd be fine. Yeah, just nothing. Like, it was a nothing to him. I don't know, man, like, I don't know how to get you there, but there's a place for you where you don't feel like this, and I hope you can find a path to it. I don't, I don't exactly know what it is, but I'd start by listening to your wife. She's probably smarter than you, and she definitely is.
Nick 1:08:07
She says that all the times, like, you don't even understand this is not that there's people that have kids that are in wheelchairs or that can't, you know, could that have cancer or that, you know, there's way worse things that could be.
Scott Benner 1:08:17
Yeah, I'm not big into like, you know, holding up people's illnesses against each other, but I'm just saying like, you know it could, and I'm not usually a person who says this, because I don't minimize what's happening to you or your son, but it really could be worse. Yeah, and forget that. At least, this is something you can it's manageable. Imagine if you your insurance wouldn't cover the Dexcom. It's funny,
Nick 1:08:38
because they just sent a letter saying that they might not be covering but it might have been a mistake. A mistake. So, like, you know, but like, I can't imagine what that was like. That was like, another like, meltdown, like, for my emotions a couple weeks ago when I got that, like, I'm, like, Yeah, well, that's, I could not imagine paying $3,000 a month for Dexcom, or whatever the number is, but it's insane. I'm I don't
Scott Benner 1:08:57
think it would be that much, but it would be a lot. And also, like, it's like you said, it's not going to happen, and still, if it happened, you could pivot, man. You know, there's things you could do. You could go on Medicaid. Nothing that's going to happen to your kid isn't in some way addressable, like I said, unless the worst thing happens. But then, now you can't stop that anyway. You know, I'm saying like, like, the drones, if the drones are gonna come then start shooting missiles at all of us, or whatever the whole people thought was gonna happen, that's not a thing you're gonna you're in control of, you know. I mean, like, Do you worry about being attacked by a bear? Nah, no, but you live, there's a lot of bears. Where you
Nick 1:09:36
are. Yeah, there are, yeah. I mean, there, not by me exactly, no,
Scott Benner 1:09:40
but in Jersey, like you could walk into a park in a barrack, it's not you've never once thought about it in your life,
Nick 1:09:45
didn't you? Remember, I don't do anything. I stay home all day. What do you
Scott Benner 1:09:48
do for a living? Like you don't have to tell me exactly, but are you I
Nick 1:09:52
work with a gas company. I work on gas lines so and I'll work everything me.
Scott Benner 1:09:55
Nick, yeah, so you work on stuff that blows up. Ah,
Nick 1:09:59
don't. Do you got you're doing the whole news thing, that stuff doesn't happen. You know when that happens when people, like, fiddle with something inside their house and they're not supposed to? That's when houses blow up. People should not be scared of okay,
Scott Benner 1:10:09
well, then take your advice about the gas and apply it to the diabetes. Yeah.
Nick 1:10:14
I mean, listen, I'm you're like, uh, like, a higher power to me and a lot of people, I'm sure, like, you have so much information you share and bring people together. Like, I'm hoping this stuff sticks like, I've heard it for the last three years on the podcast. Like, and things you said stuck, like, very, you know, good with me, but like, I just, I just need to, like, you said, Calm the
Scott Benner 1:10:37
down, yeah. Well, Nick, we're gonna leave it there, because I'm gonna, right now, go find my wife and tell her I'm a higher power and see what I can accomplish. I don't even think it's gonna get me lunch, but I'm gonna give it a shot. I'll buy you lunch one day. You don't need to do that. You also don't need to say what you just said. That was insane and kind but I swear to you, I'm just making a podcast like that. Yes, like, you know what I mean? Like, you know, I've been thinking a lot about the podcast lately, just because it's the end of the year and I had time off, and it's a lot of work to make this show, and a lot of time and a lot of effort and, like, thought and consideration everything. So I kind of took off for Christmas, like, you know, for like, a week or so, you know, I did a very good job. I'll tell you what Nick I followed my own advice. I stopped making the podcast, and a day into it, I started thinking about the podcast, not making it, but how to make it bigger, or how to make it more popular, or do all the things that needs to be done. And I stopped myself. I was like, Do not think about this right now. And there were like thoughts in the back of my head, like, I'm a very competitive person, like, so I think if I'm not moving forward. I've lost, like, that's how I feel about like, professionally, like, when I do not just this. I've done other things professionally, too. So taking a couple of days off was hard for me, but I stopped myself, and I just let go of it. I just let go of it. And I was like, I am not going to think about this podcast for the rest of the year is basically how I put it. I have two advertisers who I haven't heard back from. Like, I'm nervous about that. I probably should have been sending emails, but I was just like, whatever. As soon as I wasn't looking I started getting nervous about downloads. Then December did way better than it usually does in December. So like me worrying about it wouldn't have done anything like it, just it would have worked out the way it was going to work out one way or the other. You're just not in control, as well as as much as you think you are. And I think that the illusion of control is what you're actually chasing, because everything is fairly random, you know, like, I don't think anything bad is going to happen to your son or my daughter, but if it does, like, you have to try to put yourself in my shoes for a second. I've been making a podcast about type one diabetes now for 10 years. What if my daughter dies? What if she has, like, a horrible low blood sugar incident and she she dies, then I'm the guy you just said to me, whatever you just said to me that was ridiculous. Like, I'm a higher power about diabetes. Like, can you imagine? Like, so if I walked around with that pressure all the time. I wouldn't be able to do this because I'd be too worried that, like, what if this unthinkable thing that is very likely not gonna happen happens? I'd be too worried about it to make the show, and then you wouldn't learn what you've learned about, and everybody listening wouldn't have learned what they've learned about. Like, I would stop myself with the fear if I let an irrational fear get in my way, and even, and I've had to have that thought, right? Like, I've had to have that thought, like, you're out there talking to people about diabetes, what if something bad happens? Arden had a seizure, and mostly people are very kind about it. But there are a handful of people on the internet who will run around and talk about it, like, don't listen to that guy. His daughter had a seizure. Well, yeah. And I hope that never happens to you or your kid, but it might, and it didn't happen to her because we're unsafe or, you know, didn't understand what we were doing. It was the randomness of diabetes, and when it happened, we did the things we knew to do, and we fixed it, and that was it. That's what diabetes is. Diabetes is to me, being aware of what can happen, being ready to deal with it if it happens, but never thinking about it unless it happens, like the scary parts. To me, that's how I deal with the scary parts. I know what to do. I have stuff that I can do it with if it happens, I will handle it, and otherwise I never think about it. And I know that's easier said than done, especially for people with anxiety, because I hear from people all the time where, like Scott, you're just lucky, you're not anxious. I get that, I really do, but that's the path to that. Be ready, be aware, never think about it, till it happens. I don't know. I think you're doing great with the management stuff. I don't imagine you guys are going to have a problem, but if you do, it sounds like you know what to do,
Nick 1:14:45
yeah? I hope. I hope so too. I hope that it just keeps going pretty smooth,
Scott Benner 1:14:50
yeah, but Nick, it's going to be bumpy at some point, but the bump is going to happen twice a year, not 365, days a year, and you can't be jacked up. Been ready for it to go to hell every five seconds because you're gonna pop you have a heart attack, you know what? I mean? Yeah, you just lost 70 pounds, dude. That's awesome. Like, keep going with that, you know? Like, focus on something good. Yeah. Have you ever celebrated the weight loss, even just in your own head?
Nick 1:15:17
No, no. It's like, I'm not big on the cell, you know, it just, it is what it is, you know, it's funny, because about me, it's like, it is what it is. It's, you know, it's fine. Who cares? Like, uh oh, 10 years this coffee. Who cares, you know, it's like, but for, you know, like, again, I'm just really focused on one individual. And, you know, pretty much it, which is a very bad habit, I'd
Scott Benner 1:15:40
celebrate more wins if I was you. Seriously. And diabetes related to, like, you get a Bolus, right? Take a second to be, like, if that went all right. Like, awesome. Like, instead of just discussing it with yourself when it's bad, when it goes good, go, Yeah, I got that one, you know, there we go. Like, you know, I mean, like, you know, when you're watching a football game, and like, you know, they run the ball and, like, they go two yards, and everybody watching at home is like, Oh, come on. But they're really excited. They're like, hey, we pushed the ball ahead two yards. Like they have a different perspective than you do. Yeah, you got to give yourself that perspective. Like, hey, it was just two yards, but that's a win. We're moving forward. We're doing it right? Maybe we're gonna punt here. But you know what I mean, we learned something from this. We're gonna keep moving forward, and then if it doesn't work out in that game, you expand it to the next game, and if it doesn't work out for 18 games, and you expand it the next year, you just have to kind of keep giving yourself the opportunity to learn and grow, instead of cutting yourself off at the knees every time something goes wrong. Because the truth is, is, like, something's not going wrong that often.
Nick 1:16:44
No, yeah, you're definitely a half glass full, and I'm a half glass empty in this situation. Kind of well
Scott Benner 1:16:51
in this situation. But generally speaking, Nick I'm not like, I'm a no person. You ask me about something we should do, and I say, No, should we go on vacation? No, it's too expensive. Should we do this? No, we can't do that. No, no. Like, I start with no, but I don't stop it. No, I work backwards from No. And that's the thing my wife pointed out to me that I have, generally speaking, stopped doing because she said it was heavy. You know what I mean? Like, you know, should we do this? No, but I wasn't really saying, No, I just my brain works that way. I start with what could go wrong, and I work backwards to how to make it go right. Okay, so you don't jump into stuff that's Well, that's a nice way of putting it, except it's a bummer for people who are around you, yeah, like, right. So now I try to start with yes, let's find reasons why this is a good idea, and if it's a bad idea, that's fine, but let's try to find reasons why it's good. I've been doing that the last couple of years, and generally speaking, I'm happier. And I got to go on vacation last year, and guess what? We didn't die. It was awesome, like we went on vacation and I still paid my electric bill. So yeah, got money. You got big money. I grew up really broke, so my fear is what held me back, like, I'm very afraid of being broke again. Like, very, very afraid of it, but, yeah, it's probably not going to happen. Like, I'm not going to be wealthy at any point, but like, I'm not gonna, like, I don't think I'm ever gonna be a hey, it's meatloaf on Thursday, and on Friday we're gonna have meatloaf sandwiches, and then on Friday night, we'll have leftover meatloaf. And then on Saturday, if it doesn't smell too bad, we'll eat the meatloaf again. I don't think that's gonna happen to me again, but at the same time, I don't know, man, like time's ticking. How old are you? 38 All right, I'm gonna tell you something. I am 53 I don't know how it happened. I genuinely, genuinely do not know it how it happened, and I am 100% sure the next time I look up, I'm going to be 60.
Nick 1:18:49
So, yeah, that's I look at people at work. I go, 25 man, 22 man, I wish I started the year when I was that young. And it's like, and I remember, I'm like, I'm 38 like, I'm, like, not even that old, but for what I in my field, it's a little bit old. Like, it's like, to be digging holes and stuff like that. That's, yeah, you know, I go look at these guys. I'm like, man, they don't know what they got at 22 and 23 like, good job.
Scott Benner 1:19:14
Yeah, well, listen, I'm just saying, like, don't waste time. Yeah, it goes fast. It goes it. I'm telling you, it sounds like when I I am now, one of those people, if you're pregnant and young and are looking for any kind of advice from me, it's the advice you get from me. Time goes faster than you think it does. That's the only advice I can give. Like, I would give anything for my kids to be younger. I would give anything for me to be younger, you know, like that feeling. That's like, you know, when I took my wife out on a date when I was like, 25 like that stuff, it's just all gone. You can be like, Oh, you can make it. You can't. Life changes in it, and it's fine, like, it's not bad now, it's just different. But there are moments you look back at and you're like, Oh, I wish I could be back in that happiness. I don't want you to look back as a person. Who's no longer angry or no longer, you know, running around crazy, anxious all the time, and think, oh my god, I wasted that time, like I wasted that day being angry. I wasted that five minutes being upset. Because when you realize you can't get it back, it's, it's a bad feeling. So
Nick 1:20:16
here, here's a question for you, Are you, uh, it's a totally off. But are, are you afraid of death or just, or just getting older and going, what did I miss? Or, like, Where'd it go?
Scott Benner 1:20:25
Well, I've thought about this fairly extensively. Academically, I am not afraid to die, as long as I die at an older age, right? Like, and fear of death is, is silly, like, if, I mean, if my house collapses right now and I die, I won't even know like so that's not my concern. My concern is about I want more of this, so I want to stay in the game as long as I can, to have as many of these experiences as possible. But I'm also not religious. I do believe that when I die, I shut off and I'm done. And I have also had people in my life die, and I know that as sad as it is and as horrible as it is, after time passes, after a while, it really doesn't hurt anymore, and so you do disappear eventually, you know what I mean? Like if I died now, my possible grandchildren won't know me. That's upsetting, but it won't matter to them. Yeah, but when you stop and think about all the things Ben Franklin did, for example, and no one thinks about it, that almost makes me mad, by the way. I realized it was a long time ago and we hadn't done a lot of things yet, but it was a guy who, like, innovated a ton of things that we still do today, but no one thinks about it that way in the confines of your own personal life, I don't know that. It's about legacy that's beyond how happy the people around you are. Meaning, I don't care if my son runs around for 20 years after I'm gone going my dad was awesome. I don't care if he does that or he doesn't. I care if his life is awesome, because I was awesome. Like, that's what I'm worried about. Like, I'm worried about him having an enjoyable, happy, healthy life, and being able to pass those ideas on to possible children or people around him, so that that spreads in the world. Like, that's what I feel like my job is. It's why I'm so upset that you're angry, because I know you're going to spread that anger over your kids, and it won't be on purpose. I don't know that the happiness I'm trying to put on my kids is on purpose. I'm just trying to be the best person I can be look out for everybody. I have that feeling you have about being a good dad and taking care of people and all that stuff. I have that a lot more than probably is healthy, but at the same time, like, if you can't do it while you're screaming off this fcking sucks. Everything's terrible.
Nick 1:22:43
That was like, spot on impression right there of you. Like, when my wife hears this, she's gonna be like, Oh my God, how do you know what you say? Because
Scott Benner 1:22:50
I've said it before too, because I've seen a blood sugar and been like, I've been that person, man, I'm talking to you as you like, I've been that person. I've seen that blood sugar and thank God I screwed up, or this is going to kill her, or whatever. Except what I didn't know, but I know now to tell you, is that with more time and more experience, those things don't happen as frequently. And once I really see what's happening, I know like I didn't make a mistake here, like this is just what happened. This was always going to happen. There was no getting around this one like Arden had a low this morning, like she was like 70, but she was sleeping, and it needed some juice because it was going to keep going. It was unavoidable, because at two o'clock in the morning, her blood sugar, for reasons I can't figure out, jumped up significantly. So it jumped up. I knocked it back down again because she was sleeping. When I did it, I thought she's going to be lower than I want her to be, like, four or five hours from now, and she was and I was asleep, because I was up in the middle of the night for two hours with the high blood sugar. And you know what happened? My wife got up and gave her the juice, or she would have done it, or something would have happened, but I didn't stay up for 24 hours and make myself a zombie over it, like, that's just not doable. So back to your question, I don't want to die. I'd like to be here for as long as I can walk around, take a without shitting on myself and think, like, those are the things I'm concerned with, right? Like, I'd like to be mobile. I don't want to be incapacitated, and I want to be able to have my thoughts. Like, if I can do that, I want to stay here as long as I can. But if five minutes from now I walked my head on something, and I wasn't coming back, and you gave me a button, I'd leave like, because I wouldn't want that for my my family, like, I wouldn't want them to sit and watch me deteriorate if I if they didn't have to. Like, it's not about being afraid of death. It's about being afraid of not living.
Nick 1:24:51
If that makes sense, yeah, I feel, yeah. I've been known to walk around here and say, Jesus just kill me at when things are going bad. Right? But like, that's like, the total opposite of what I want. Like, I really would want to be here as long as I can, and to see my family keep, you know, going as long as I can. And, you know, see, my children have the children, their children, you know, it's just, it's the stress is, just, for me, is immense. It's like, just, no, I It's hard to it's hard to get through it. But I
Scott Benner 1:25:22
am not unfeeling to what you just said, like, and I'd have to tell you five years ago, I'd be like, Man, I'd say, Calm the down. I'd mean it like I was kidding before. I've now spoken to enough people with stress and anxiety issues, I'm 100,000,000% behind you. I understand how difficult this is for you and but that's why I would do whatever I could to mitigate it, because if it's a lifelong thing that you're going to deal with, then just trying to power through it, hoping it's going to go away is not the answer, either, because you're not going to power through it, it is going to give you, like, a heart attack or a stroke, or, you know, you're going to gain a bunch of weight again, or, you know, something bad is going to come from all that anxiety. So if you got to mitigate it with a medication, I think I would, if I was you like, I know you don't want to, but, like, just imagine that, you know, six months from now, you don't feel like this, not just once, but for like, a week, and then a month and then, you know, I mean, that would be freaking crazy. That'd be awesome. I don't know. I don't know the answer. Again, not a doctor. This is not advice barely got through high school. My wife thinks I'm an idiot. You probably shouldn't listen to me, but it's just how it occurs to me, we did good here. Nick, you're gonna be alright. I'm gonna worry about you for the rest of the day. I just want you to know, oh, just the rest of the day. Yeah, I mean, listen, I'm busy, but I wish you a ton of luck. Tell your wife thank you that it was really lovely to speak to you, and I think she's super lucky to get to spend time
Nick 1:26:57
with you. Hopefully, yeah, I'm gonna go upstairs and give them a big hug. Awesome. So thank you. I mean, like I said, I appreciate all that you've done for the community. It's you don't give yourself enough. I mean, you just made a collection of information for people for a lifetime beyond you to use. So it'll hopefully live on forever, or at least until it's cured. I hope
Scott Benner 1:27:21
so too. That was very nice of you to say, but I was thinking of something for you. I did an episode with Erica, episode 913, it's called the 54321, method. Yeah, I pulled it up. Okay, it's grounding techniques. See if that's helpful to
Nick 1:27:38
you. 517, that's that's my wedding anniversary. Is it
Scott Benner 1:27:42
really? Listen to that one, and it's a episode, 913, the 54321, method, and try to put it into practice when you're having like stress or anxiety. I think that a lot of these things work for people, and people are just too embarrassed, or they think it's stupid, so they don't do stuff like this. So basically it's this, you acknowledge five things, you can see four things you can touch, three things, you can hear, two things you can smell, one thing you can taste. And by the time you put your brain through that process, which does not take long at all, it'll kind of help you reset. But listen to it. Erica does a much better job of explaining it than I just
Nick 1:28:19
did. Yeah, all right, I'll definitely check. I mean, I I'm like, I'm in and out with the podcast. Honestly, it's, there's so much. I mean, I definitely in the first, probably the first year I listened to so much that I think I burnt myself out mentally with diabetes. I hear you. You'll be back. Yeah, no, I come and go. Believe me, I still appreciate, I still look for certain keywords when I'm looking for something, and I'll listen, you know, the Pro Series, if you add something, yeah, I think in a way, it gave me a little little depression, but also kept me informed. So it was, like, kind of the balancing I need to, like, start doing there, because I gained so much information from you guys that, like, you know, I still come and go, but like, it's, it's a lot. It's a lot to keep harp like, he's, like, you know, you notice what I'm saying is, I understand. I'm constantly thinking about it non stop. To add, you know, six more hours a week to it's a
Scott Benner 1:29:13
lot. Yeah, no, I completely understand, and it's there for you if you need it. And but 913, is not about diabetes. It's about kind of centering yourself and getting your mind off the things that are bothering you. So check it out. It really could be
Nick 1:29:26
valuable. Thank you. I really do appreciate your time with me today.
Scott Benner 1:29:30
No, I appreciate you telling your story and chopping it up with me like this. I thought we had a good time. So this is great. Thank you so much. That's my pleasure. Happy New Year. Same to you. Thank you. Hold on one second.
I'd like to thank the ever since 365 for sponsoring this episode of The Juicebox Podcast, and remind you that if you want the only sensor that gets inserted once a year and. And not every 14 days you want the ever since CGM, ever since cgm.com/juicebox, one year, one CGM. The podcast you just enjoyed was sponsored by tandem diabetes care. Learn more about tandems, newest automated insulin delivery system, tandem Moby with control iq plus technology at tandem diabetes.com/juice box. There are links in the show notes and links at Juicebox Podcast com, hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. 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, wrongway recording.com, you.
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#1493 Logging Trauma
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
Ellie, 33, diagnosed young, defied doctors’ warnings; managing T1D, PCOS with GLP, she used Jenny and celebrated ideal A1c pregnancy.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.
Ellie 0:15
Hi there. I'm Ellie. I've been type one for almost 30 years, and I am a mom of two twin toddlers.
Scott Benner 0:24
Please don't forget 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. AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure you check out drink AG, one.com/juice box. To get this offer, don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d exchange.org/juice box. And take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juice, box. It should not take you more than about 10 minutes. Today's podcast is sponsored by the insulin pump that my daughter has been wearing since she was four years old. Omnipod. Omnipod.com/juice, box. You too can have the same insulin pump that my daughter has been wearing every day for 16 years. This episode of The Juicebox Podcast is brought to you by my favorite diabetes organization, touched by type one. Please take a moment to learn more about them at touched by type one.org, on Facebook and Instagram. Touched by type one.org. Check out their many programs, their annual conference, awareness campaign, their D box program, dancing for diabetes. They have a dance program for local kids, a golf night and so much more touched by type one.org. You're looking to help or you want to see people helping people with type one. You want touch by type one.org This episode of the juice box podcast is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, US med is where my daughter gets her diabetes supplies from and you could, too use the link or number to get your free benefits check and get started today with us. Med,
Ellie 3:08
Hi there. I'm Ellie. I've been type one for almost 30 years, and I am a mom of two twin toddlers.
Scott Benner 3:19
Two twin toddlers. Yes, does that mean you have two children or you have two
Ellie 3:24
children? No, I have two children, just my twins.
Scott Benner 3:27
Gotcha, I wasn't sure. Was I misunderstanding that two twin toddlers?
Ellie 3:31
I made that more complicated than it needed to be. Yeah, because you
Scott Benner 3:35
would be the mother of twin toddlers,
Ellie 3:38
true, but they're twins, and that's a big part of our existence, is the fact that they're twin. I
Scott Benner 3:43
was just like, Oh my God, how did she have four kids in such a short amount of time? Now I understand. How long ago were you diagnosed? I
Ellie 3:52
was diagnosed in 1995 I was two and a half. So few months I will be marking my 30th anniversary.
Scott Benner 4:05
Wow, good for you. That's a stretch. Has it been hard? Has it been easier than you thought it was going to be? How do you describe it to people as
Ellie 4:14
a journey? It's definitely been up and down over the years. I did really well as a younger kid, especially when my parents were super involved. This was, you know, pre Dexcom days and testing in the middle of the night and all of that. But definitely in teenage years, struggled big time into early adulthood, dealt with burnout, really a big piece that was very hard for me is I was trying very hard, or felt like I was trying, pre burnout and back then. And I don't know it sounds like from various episodes I've listened to that many of the endocrinologists out there today are much more respect. Full of including teens in their care. When I was a teen, the attitude was that, from the end, does I worked with, they didn't trust teenagers. I mean, I went to a number of them over time, I switched a few times, and there really just wasn't trust there. They felt that many of them made up their log entries, and people did. There was a lot of pressure around going to those visits. I really like to do well in school, I had kind of a good girl personality, and so I would go to these appointments. And it, it very much felt like a judgment session of, you know, how our How did the log sheets look? And I definitely carry log logging trauma to this day. Anything I need to track or log is like, Oh God, I don't want to do that. That was really hard. And I think eventually, as you know, puberty hit, and my numbers started going up, and I wanted to do better, but was really struggling to do that. I wasn't getting the support I needed, and over time, they just kind of artificially kept hitting me with more and more basal to kind of cover, cover the bases. We really weren't doing carb testing or really even basal testing. It was like, well, you're running high. Let's just give you more insulin all the time. And when you do that over time, I ended up being more resistant, you know, it just it led into this really negative loop that lasted into early adulthood.
Scott Benner 6:31
Can I dig through that a little bit with you? Yeah, yeah. Absolutely. Before I do, I want everyone to know that if you go to YouTube and search logging trauma, you get a surprising number of videos about people being hit or killed by trees while they're being cut down, and a lot of instructional nursing videos about how to turn people with something called the log roll. Just so, you know, I want to make sure I understand. You're a rule follower. You're a young kid. You want to get good grades. You want people to think of you well. And this visit to this doctor's office was in no way pleasant for you, and on top of that, they probably weren't even including you in the conversation. So you're there feeling like this whole thing hinges, like your personality hinges on the outcome of this, and they're not even talking directly to you. Yes,
Ellie 7:15
exactly. And that really started around puberty, when my numbers started getting worse. You know, before that, when you're getting sixes, low sevens, every time for a one, CS, like, good job, you know, we'll see you next time. And that was it, when my numbers started going up. This is my my endo trauma story, a little bit of trauma from childhood in 30 years, my endo story was the first time my a 1c really went up. And I'm guessing it was like mid sevens, maybe low eights at the time. I don't remember. I was probably 11 or 11 when this happened. My endo came in the room. And, I mean, I picture this image in my head retelling the story of her coming up to me and saying, Do you know what happens to little girls who don't take care of their diabetes?
Scott Benner 8:11
Oh, what happens to them? They die? Oh, I thought they got a fairy. Okay, so
Ellie 8:17
I wish that's not what happened.
Scott Benner 8:21
That's what was said to you. How old were you under
Ellie 8:23
12? Like 10 or 11. And I happened to have had my best friend with me at the appointment. She asked her to leave the room. Left the room after she said that to me, and went to the bathroom and cried. Apparently I didn't announce where I was going, and the entire office was looking for me because they didn't know where
Scott Benner 8:43
I went. They probably thought you were looking for a rooftop or something. Probably Do you remember the you probably have a photo of them in your house. But like, is it an adult male female in their 60s? Now,
Ellie 8:54
how old was she? Now? How old was she? I don't recall that. I do know she's semi still practicing awesome. I worked in the same facility as her for a brief amount of time, and I'm an architect by training, and I worked as a project manager in a children's hospital. And at the time, one of one of the facilities people who I was close with, he said, you know, if there's anybody you ever have an issue with, I can manually control the temperature in their office, and whatever they set it to, it won't matter, because I have master control. Listen,
Scott Benner 9:32
I just need to know, did you freeze this lady out? I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using us Med, you can too us med.com/juice, box, or call 888-721-1514, to get your free benefits, check us med has served over 1 million people living with. Diabetes since 1996 they carry everything you need, from CGM to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, libre three, Dexcom g7 and pumps like Omnipod five, Omnipod tandem, and most recently, the I let pump from beta bionics, the stuff you're looking for, they have it at us. Med, 88887211514, or go to us. Med.com/juice, box, to get started now use my link to support the podcast. That's us. Med.com/juice, box, or call 888-721-1514, today's episode of The Juicebox Podcast is sponsored by Omnipod. And before I tell you about Omnipod, the device, I'd like to tell you about Omnipod the company. I approached Omnipod in 2015 and asked them to buy an ad on a podcast that I hadn't even begun to make yet, because the podcast didn't have any listeners, all I could promise them was that I was going to try to help people living with type one diabetes, and that was enough for Omnipod. They bought their first ad, and I used that money to support myself while I was growing the Juicebox Podcast. You might even say that Omnipod is the firm foundation of the Juicebox Podcast, and it's actually the firm foundation of how my daughter manages her type one diabetes every day. Omnipod.com/juicebox whether you want the Omnipod five or the Omnipod dash, using my link, let's Omnipod know what a good decision they made in 2015 and continue to make to this day, Omnipod is easy to use, easy to fill, easy to wear. And I know that because my daughter has been wearing one every day since she was four years old, and she will be 20 this year, there is not enough time in an ad for me to tell you everything that I know about Omnipod, but please take a look omnipod.com/juicebox. I think Omnipod could be a good friend to you, just like it has been to my daughter and my family.
Ellie 12:13
I want to do so many times, Scott, but I did it. Did
Scott Benner 12:17
you ever say anything to her? Do you ever say, Hey, you ruined my life.
Ellie 12:20
I never even crossed paths with her, and I'm not even sure if she was working in that building at the time or one of the off site locations, because I just didn't want to, I just didn't want to go
Scott Benner 12:31
there. Let me tell you this, like, odd little side story. So my wife would tell me about this very like, harsh, mean, nasty teacher that she had, and she'd tell the story, sometimes almost like she was a little girl, you know. And I don't know like what to think about that, like I had horrible teachers too. I want to say Mrs. Nelson, my second grade teacher. She and I hated each other with a passion. I've never seen an adult hate a child like that, or the child hate an adult like that, but she and I had an adversarial relationship for every day of school the entire I was in second grade, so much so that on the last day of school, for just bits and giggles, she put me in the hallway for the entire eight hours, while everyone was in that room having a party and enjoying themselves. She made me stand leaning against the locker from the bell to the bell, and I'm telling you, she looked at me, and the look in her eye was you, and then she stuck me out in the hall. I know what it is, but I didn't have like. My memories of it are just funny. I just think it's funny. My wife did not does not talk about that way. We walk into a restaurant one day to give our name at the front, to wait our turn, and we step back to wait, and that woman is standing there. She's also waiting for a table. And it turns my wife to jello. Was really interesting, because she's not that person, like my wife's not like fragile, you know what I mean? And she really like crumbled, and I was like, what's going on? And she goes, that's her. And she, you know, she said her name, I'm not gonna say her name here. And I was like, are you okay? And she was shook. So I stepped up to the woman and I said, Hi, this is my wife. She had you in kindergarten, and she's still scared of you today. And the woman thought it was funny, wow. So I don't know what to make of all this. Like, I don't understand, like, under 12 years old being approached by an adult, hey, little girl. You know what happens to little girls like and you weren't not taking care of yourself, right? No.
Ellie 14:36
I mean, it was not like gross negligence by any means. My sugars started going up because I was getting hormones, that is what was happening, and we needed to adjust. And I'm not sure what possessed her to say it people have bad days, but it's one of those things that, yeah, it stayed with me for a long time.
Scott Benner 14:56
You can't use I people have bad days as an excuse when you're. Bad day could, I mean, how old are you today? 32 Uh huh. Do you still remember like it was yesterday? Oh yeah, yeah. Well, then it's not okay for her to have a bad day on you like that. You know what I mean. Now, if you sat her down here and she said, listen, the 1000s of girls I saw hit puberty and then their blood sugars got out of control. And no matter what I did, it didn't work. So 10 years in, I just started trying to scare them, like, I mean, I might understand the thinking, but like, I don't. I don't understand actually doing it for sure. Yeah. I mean, it's your job. Just have the fight every time, and it'll work for some of them and not work for the others. But anyway, I'm sorry, go ahead.
Ellie 15:36
No, it's okay. Yeah, that's just, you know, said part of my story, so that happened. I left her after that, obviously, we moved on to another Endo. Eventually, my parents were really into trying to help me be independent. And, you know, prepare for leaving home post high school, they were very there for me, very supportive. Really helped me with my diabetes as much as they could, but really wanted me to be independent, and so I studied abroad. I went to Israel after high school for a year, and then I went to college. And during that time, in both places, actually, I found endos just for extra support, or in case I needed, had an emergency or something. And my endo in New York saw where my basal were at, and he artificially just flashed them in half. He's like, you're just taking entirely too much insulin. I don't believe that you need this much insulin, and we need to step back. And it was so interesting because he did that, and it really helped, at least with some of the resistance piece. Was not a big fix by any means, but it did help just to sort of start over at that time, trying to remember exactly when Dexcom was introduced to me. They were that office was really pushing me to use it. And I really struggled with the insertion back then with the old ARPU
Scott Benner 17:08
style, that clear tube one where you push the plunger exactly
Ellie 17:12
I would every time I'd be so anxious about it, I'd shoot it halfway in and then stop because it hurt, and then would get anxious for another 30 minutes to finish pushing the fan. It was just a mess. So it was not using it consistently by any means. Around the same time, though, back at home, I was diagnosed with PCOS, which for me, was a game changer, because I finally felt like it gave me some explanation as to why things just seemed harder for me. I didn't know why it was very frustrating for me that I felt like I was putting in the effort and I wasn't getting the numbers I wanted. You know, like my a one CS, would hover around somewhere in the eights, sometimes low sevens, if it was really good, sometimes higher. I just really struggled to have the control I wanted. And you know, on occasion, when I ran into another diabetic, I could tell them all the things you're supposed to do. But taking my own advice, I wasn't getting those results. So PCOS really helped me understand that there's hormones going on in the background that are sort of unpredictable, that are making this harder.
Scott Benner 18:33
Yeah, I have a question. If you had PCOS, how did cutting your basal improve things?
Ellie 18:39
It didn't improve things necessarily right away. I think just starting over at a lower place and then doing more at meal times, I see we weren't just blanketing, giving more basal all the time to as a band aid. Like, let's give more at meals. Let's figure out, you know, my sensitivity factors were off. That all helped.
Scott Benner 19:02
You were being over basal to cover for not bolusing at meals Exactly. Gotcha, okay, all right. I was like, How was less insulin helping if you have PCOS? Okay, Sue, how did you get the PCOS diagnosis? What testing did they do? I had
Ellie 19:15
an ultrasound at some point, and I think I was complaining of heavy bleeding, and so my my gynecologist worked me up, and she said, that's probably what's going on. And so, so that was that. And then at that time, I actually went on Invokana to help with resistance, which I loved at the time, I thought it was the greatest thing ever. I felt like it was this boost in the background that just made everything easier, so that that really helped a lot. I lost weight with it. It really kept my sugars down in a lot of ways, but I knew that, you know, it was in my. A future that I wanted to get married, have a family, and knew at some point I wouldn't be able to stay on it. Fast forward, I got married in grad school. My husband encouraged me, really to start wearing my Dexcom all the time. He's like, sorry, my husband is a chemist and he's a data guy, and he's like, you have this tool. We can get tons of data. You need to wear this all the time, yeah. And so he started helping me by putting it in, which was a huge thing. I was like, here, you help me do it. I can. I don't have to deal with the mental piece of this trying to insert it. At that time, it was already spring loaded, which made it better, too.
Scott Benner 20:42
Your thumb was the spring back. Then you were like, Bush,
Ellie 20:45
oh yeah, oh God, by the
Scott Benner 20:48
time he helped you, it was the Star Wars ship with the orange button on the top. Exactly. Okay, right, yeah, hey. Just for people's knowledge, invocana is a sglt, two blocks, reabsorption of glucose into the kidneys, causing excess glucose to be excreted in the urine, not a GLP one, which is probably what people might think when they just hear like a medication word, I'm gonna guess you're on a GLP one. Now I am. I already knew it. I know. Thanks. Okay, I've told this story a couple of times in the last couple of weeks, but I was at this big dinner with a bunch of people that I didn't know, and this one guy is kind of like, you know, a couple seats down from me, he's a physician. And he stops me at some point. He goes, Hey, I'm so sorry. What kind of doctor are you? And I was like, I make a podcast. I barely got through high school. And he goes, Oh, I thought you were a physician. Sorry. Keep going. GLP ones mimic the hormone GLP one increase insulin secretion in response to meals. Slow stomach emptying, reduce appetite. They have impacts on digestive and pancreatic function. So I'm sorry. I just want people to understand the difference between the two, because I figured we were going to get to it at some point. Yes, you've got your husband sticking it in, and you start getting data back. So what do you learn there? Did he help you read the data as well?
Ellie 22:02
He did, and I remember thinking it was the funniest thing, because he was putting it into PowerPoint and making graphs and all of that for us to start really digging in and looking at it. And about a year in to our marriage, I started working with Jenny, oh, and I still work with Jenny, and that's actually how I found out about the podcast a number of years ago. Is when she told me about it. So I kind of had a backwards path. I know a lot of people find Jenny through you. We don't
Scott Benner 22:35
have to say where, but did you find Jenny through Gary? At the thing that I think you might have gone to No, no. How did you find Jenny? Then
Ellie 22:43
at that point, I had a nice endo who was supportive, but I just felt like I needed a refresh. I just felt like my numbers were not, my settings weren't where they needed to be, and I just felt like I needed more help than I was getting in my private office, and started looking online for where I could get that and found integrated, wow. And I was looking specifically for a nutritionist at the time to kind of talk through my struggles with covering for protein and fat, and those were things I was having a hard time with then. And actually, it was funny, I saw a nutritionist at my college campus, or my it was grad school at the time, but I saw one there, and her response was, you're not eating enough carbs for your body. And it was like, contrary to everything I had ever been told for anything related to diabetes, and I'm like, This is not sitting right with me. I need someone who knows diabetes really well to be helpful, and I feel like I have a good understanding. You know, I'm not trained or certified in anything, but just about basics of nutrition, I'm like, That's not my problem here. I'm struggling to cover for my food appropriately. Jenny really, really helped with it, so I started working with her in I think it was like 2017
Scott Benner 24:16
I have to stop you for a second. How do you stop yourself in that appointment from going, I'm gonna go now, because
Ellie 24:23
that's really hard. Like, I get that you think you know what you're talking about, but this is not
Scott Benner 24:30
you're there struggling with, like, higher a one season you want, like, you're using a lot of insulin, you're not getting the results you want. And this person looks you straight in the face and goes, You know what? You need? More carbohydrates, right? Yeah, and you didn't laugh or curse or bang your head on something or nothing like that.
Ellie 24:47
I politely smiled and nodded. I'm in the Midwest. Scott, so that's what we do.
Scott Benner 24:51
Wait. They're letting Jews in the Midwest now. What's going on? We've been here for a long time. I didn't know that's insane. Of. I don't know, like, I don't know what's with me, but I think I would just go, okay, hold on, stop. I'm gonna leave. You can still send the bill if you want, but I gotta go. Did you misspeak? Did you mean protein? Were you trying to say something else? You meant carbs? She
Ellie 25:13
really meant carbs. We talked about it for a while. Thankfully, I did not have to pay for this, because it was during grad school and it was through, through student health. But
Scott Benner 25:23
wait, so you've been working with Jenny for seven years. Yeah, every week. Do you see her once a month? How do you do it? Once a month? So, like a like a tune up, like a check in, Mm, hmm, valuable still. Yes,
Ellie 25:35
incredibly so. And I don't plan on stopping. I have to sign up for another year, something up in a month, it has been the best investment in my health and my life that I could have ever done.
Scott Benner 25:49
Same thing. When people tell me about how after they understand how to use their insulin, they understand what they're doing, etc, and they say, Well, I keep listening to the podcast as like a touch point, like, it keeps me connected to diabetes. I don't have to think about it constantly every day to day to day, because I stop every once in a while, and I'm kind of kept in it without it being pushed right in my face. Is that like, what you get out of seeing Jenny like this?
Ellie 26:12
Yes, and also, things evolve, you know, like, we don't stay the same. Circumstances change in our life, and things like your settings, we all have this experience where you go to the end, oh, they give you your settings, and then you don't touch them again for three months. And having this touch base is having somebody else step outside of your life and look at this data and be able to give you real feedback. We email in between. It's not even just the once a month, I can say, hey, I'm having a bad week. Can you look at my night scout? She can say, make this adjustment. Make that adjustment. I mean, there's so many pieces of my story I can point back to and say, I don't know that I could have done it without Jenny.
Scott Benner 26:55
Yeah, awesome. So she tells you to check out the podcast. At
Ellie 26:58
some point, she mentioned it to me and brought it up, and we've talked about different things that have come up before that. I'm like, Hey, Jenny, on this episode, I heard about this, or they were talking about that. What do you think? And we've chatted about it. What
Scott Benner 27:13
makes me happy? I don't Yeah, I don't know another way to tell you, like that there's an ecosystem makes me very happy, and that people can find it from different avenues and be introduced to it different ways. Is it's all just very cool. How about the Facebook group? Are you in the Facebook group?
Ellie 27:27
I am, and I was just gonna say that. I think that was the first thing she was pointing me to. I don't remember what it was for, but I joined the Facebook group first. I did everything backwards. I worked with Jenny first, then went to the group, then started listening.
Scott Benner 27:44
That's awesome. I mean, any way it works to me is, is awesome. You know, it's funny. I had a person in the Facebook group yesterday who just was hell bent on arguing about something, like a sub comment of of another post. And I don't get involved. Like, I don't know if people understand my management style, but my management style is, you're adults, you'll figure it out, but at some point that the person gets reported a number of times about being kind of, like, overly aggressively pushing an idea and that the point's been made, and they just keep, you know, like, hammering at it. So I stopped in. I tried to make it better, it got worse. I tried again to make it better, it got worse. So then I was more pointed, and I was just like, you know, trying to tell them, like, like, just count, you know, like, let's just let it go. Like, we're good. Now you've made your point. You know, everybody's heard it, and when it became clear that they just really, like, wanted to argue, uh huh, what strikes in my head about what to do next is that's not what this place is for. Like, it's helping so many people. I can't let it get sidetracked with this nonsense. So I just said to the person, look, this isn't good for you. I'm not interested in this. And that's not what this place is for. I'm suspending your account for a month. If you come back after a month, that's awesome. Like, please just find a kinder way. Like, stop proselytizing so much about your idea. It doesn't matter what the idea is. Listen, if you made 10 posts about rainbows, I'd be like, it's enough. We get it. You know what I mean? Like, you love rainbows, you know? So it doesn't matter to me. But what rings in my head over and over again is that that's not what this place is for. This place is helping people, and it should not get sidetracked, because what I think is when sometimes 2030, 4050, new people come in every day, I don't need the first thing that they see is a person having a nutty because then they're just gonna leave, and then they're gonna miss out on All the stuff that comes once you get ingrained in it and really start learning how to use it and how to interact with people in the community that comes from it, et cetera. So anyway, I see that place is very sacred.
Ellie 29:50
It is. I mean, I can't tell you how many times I've gone and searched for something, and there was a post about it, and there's a recommendation, and it. Is, I think it helps people in so many ways.
Scott Benner 30:03
That's crazy. I just never imagined, honestly, so it's to see it. I think it went to 56,000 this year. I think we added 18,000 new people in 2024 that's incredible, which is really insane. It means it started it's something like in the mid 40 1000s at the beginning of the year. So that means that if it grows at this pace, next year, it'll be more like 75,000 people. It's really just, it's awesome, like, it's just a wonderful little thing in the internet that hopefully people find out about and and like you said, sometimes people find the Facebook group first, and then they'll eventually find the podcast. Sometimes people find the podcast, they go to the Facebook group, but I'll tell you right now, like it's there, it does exactly what I think it does, and it's free. That, to me, is the best stuff, because I don't talk about that enough anymore. It's just such a big part of when I started all this, it's hard to explain. This is my last recording of 2024 you are my last recording of 2024 I put out 299 episodes this year, and I don't remember five years ago, like right? But I, as the host of the podcast, I'm also, I'm also telling a story about me. You don't need to be interested in it, but by who I am and how I grow and how I change. Like you're following my progression as well, whether you realize it or not. And back in the day, I would really bang the drum of this should be free. Like, nobody needs to be paying for this. Like, no, don't get me wrong. You want to pay Jenny and, like, hang out with her once a month and get what you get out of it, and you can afford it. Like, I think that's awesome. But for the people who can't or don't know that that's even possible, or crappy insurance, or whatever they end up, where a doctor that tells them that little girls, you know, catch fire if they don't, whatever right, the information should be free, and it's always been a focus of mine to keep it free. Like, like, if you think I'm saying something that's magical, you're wrong, like I'm you know, I'm saying something that oftentimes you won't hear doctors say for varying reasons, that we've gone over ad nauseam. But there are people out there running coaching plans and charging people to tell you to pre bullish your meals, right? And I'm not okay with that. For me personally, if they want to charge you $1,000 or $2,000 to come on and hear, from what I've heard from some people, it sounds like maybe they listened to the Pro Tip series and took some notes. If you want to, like, pay them for that. I'm not going to stop you. I'm just saying it's here for free. You can have it for free. And you know, it exists for free because of the advertisers, because they they pay my bills basically like I've got lights on in my house. It's warm in here, in the winter time I drive somewhere in a car, my kids go to college, like all that is taken care of with my wife's job and my job, and it allows me to spend my time doing this right? I'm not against people who are health coaches. I think that's a perfectly legitimate way of making a living. It just seems weird to me that you should have to pay to hear something that is just information living in my head, and so like, I'm happy and proud that I found a way to get it out into the world at no cost to people anyway.
Ellie 33:15
No, I think that's amazing. And because it's a Facebook group, and through the podcast, it's so accessible. I think that's the biggest thing I remember. You know, when I was younger, there were various cat rooms on the different diabetes websites, and it wasn't easy to sort of get in and talk to people and find out what they were doing. And you know, I felt a lot more isolated back then,
Scott Benner 33:40
can we be philosophical about this for a minute? I don't have diabetes, so some people would tell you, I have no business doing this. I think I'm the perfect person to do this, because I do have a person who I love who has type one diabetes, and I did spend my life as that person was born with type one at two years old, I had to learn through the thing. Jenny and I were talking about this the other day. She's like, it's, you know, you taught yourself through experiences. I'm invested completely, 100% invested. Used to say this all the time, like, sometimes I meet people with type one and they'll tell me that they listen to podcasts and forget I don't have type one diabetes. I take that as a huge compliment. But my focus here, whether you guys all realize this or not, is for my daughter to be okay. You guys get to come along for the ride, but I'm here for her. I'm here for all you, by extension, but I make the podcast to talk to you, to hear things, so that one day I can turn to my daughter and say, Hey, you should try this, or think about this, or maybe I drop dead one day, and she comes back and listens to this straight through, and gets to see my progression as a human being, get to know me, and, you know, see where I have, you know, weaknesses, foibles, all that stuff, and at the same time, teach herself diabetes and live her life healthily. And maybe she'll have a kid one day and she'll be like, hey. Is this podcast your grandfather made like, go like, I don't know what's going to be, you know, but for me, the one thing that I have that those people might not have had in those groups that you're talking about back then is I have distance from it too, so I don't have any baggage. No one told me I was going to die when I was 12. I didn't lose my sight and have to get lasers. I don't have any the agony and the trauma and the pain and the resentment that you can have if you have type one diabetes. I do have all the love, the care, the support and the motivation. So I do think that's probably the difference. Like, I'm not saying because I'm the parent of someone with type one. I know better. There's a ton of stuff I don't know. That's what the interviews are for. You know what I mean? Like to get those bits of information right out of people who have type one. Anyway, you see that your episode is turning into my like 2024 recap for some Okay, sorry about that
Ellie 36:00
part of No, no, that's all good part of the reason, because I think I booked this many, many months ago. I wanted to sort of wrap up the year on a high note and with a lot of gratitude. So I think
Scott Benner 36:11
it's beautiful. Oh, you're lovely. Thank you. You're helping me do the same thing. Because, like, I can I be honest with you, I don't want to, like, I'm not on anybody, but when I see those, like 2024, recaps, like, these were the best episodes of this. And I'm like, uh, nobody cares. You should just say I'm trying to make content so that the algorithm doesn't forget about me at the end of the year. But I'm also trying to hang out with my family at Christmas. Like, like, that's what those episodes say to me. But I keep recording. Like, my kids are like, Are you recording a New Year's Eve? I'm like, Yeah, I make a podcast like, this is what I do. I'm recording tomorrow. Oh, wow, I recorded three times. But anyway, I'm so sorry. I don't even know where we're at. It's
Ellie 36:52
we were talking about Jenny. I was just gonna jump into the my sort of next piece that came working through Jenny was I started looping. That was transformative for me. And talking about gratitude, I think I posted in your group and the looping group at various points, just how grateful I am for loop, and especially with PCOS. And I use loop throughout my pregnancy, everything else. I think it was just that extra help in the background that can do what a human can't. You know, you can be looking at your Dexcom, 24/7, but to be able to micro correct throughout the day. I mean, I don't think things would have turned out the way they did, so that was a game changer for me. That was kind of funny, because a friend of mine had posted on Facebook this News Week article a number of years ago that was talking about how people were buying, you know, old pumps on eBay to do this sketchy, scary thing. And she posted the article, and I hadn't heard about looping yet, and I reached out to her and said, Hey, are you doing this? And she was like, Yeah, and it's pretty awesome. And so at some point, I asked Jenny about it, and I remember being super tentative, because, you know, this is not an FDA approved thing, and asking her about it. And she gave me this big smile and said, Yeah, I know what it is, and I don't I think if Jenny hadn't been up to speed on looping and had guided me through it, I don't know that I would have been brave enough then to start. I had a really tough time getting going with loop, mainly because I discovered in that process that I'm severely allergic to OmniPods. The adhesive. Okay, the adhesive. And that was also funny, I don't remember if that was the reason I found I went to your Facebook group at the time, but I went back to the Arden day blog, and one of your early early episodes was about adhesive allergies, yeah, in the first year. So there was a page there that had all these tips. I was trying everything, and I tried everything, and I could not get it to work for me. So I am looping with a 20 year old Medtronic with this incredible technology.
Scott Benner 39:27
It's awesome. Yeah, no. I mean, the people who helped me to learn how to do it for Arden, like, I'm so I'm grateful for that. Like, you know, I whoever you know, all the people who were involved in just bringing it up from the ground to where it is now, it's awesome, like every last one of them is their angels. Yeah, for putting their time into it, they're
Ellie 39:46
all incredible. And like you said, too, the and they made it free and accessible also, and you know, the loop docs and all of those resources that make it easy to do yourself. If you're not a coder, you. That was just so incredibly wonderful. Yeah,
Scott Benner 40:02
yeah, a number of wonderful people, and some of them have, you know, they come and go and they don't, they don't stay involved, but they all deserve, I think, like, an equal amount of credit, adulation, Joy. You know, absolutely well you're right. Like watching those algorithms work, those aggressive, you know, the iy algorithms that aren't held back by, you know, the fears that companies have when they're making things, and that's awesome, like it just really is. And I also think that I learned so much about how insulin works from watching, watching loop work. You know, I mean, back then, when Arden first started to loop, I was like, was like, Oh my god. This is what I've been doing. Like, this is how I had my daughter's a 1c in the fives with Temp Basal off, and Temp Basal increases. And, you know, more here, less here, give it away. Bowl is here. Like, I was like, it's just doing it all. I'm like, wow, and that. And while I'm sleeping, it's doing it where before I was awake, doing it. And right, it was killing me. Anyway. It's just, it's awesome. So Jenny was looping. When you approached Jenny about looping, that gave you the the courage to do it exactly.
Ellie 41:07
So I, I started looping, and I finally got my agencies where I needed to and and then I got pregnant with twins. Yeah, that's awesome. It was one of those things I was so worried about for years, not being able to get those kinds of numbers. And like I said, feeling like I was really putting in the effort and not feeling as easy as it seemed to be for other people. Whether that was true or not, that was just my experience. And so then, you know, when I was able to get those low sixes, A, one, CS and got pregnant with my twins, and it was a very healthy pregnancy. Thank god. I'm so, so grateful for that, and I really worked hard during that time, but also is having the tools and the resources, and Jenny during that time was immensely supportive as well. I mean, we were making changes all the time to my numbers, and you know, I was incredibly resistant at that time, as you may imagine, especially caring too. It happened much earlier my my MFM, high risk OB, at the time, she said to me, Well, we're not going to really treat you any differently with the type one versus the twins. You would have been here either way, but you're kind of double high risk. You check two boxes. I
Scott Benner 42:32
need to ask you if you think that part of what burnout is is trying so hard but not having the right tools. So you're putting in the work, but you don't have the right knowledge or tools, or whatever you want to call it, and so all the effort ends up falling flat. You don't get the return that you're hoping for. And then that's where the burnout comes from. Like, that's what I feel like I hear from people, but I'm wondering if that was your experience.
Ellie 42:59
It was, it absolutely was my experience. And then at some point in my college years, it turned into, I guess, what you'd call more classic burnout, because I wasn't checking as frequently as I knew I should have, and it was like, I feel X, I'm gonna Bolus y, and it's gonna be good enough, and it was good enough to not ever end up in the hospital. But I was running, you know, eight, eight and a half, eight, one CS, doing that. Yeah, but it's exactly that it was after years of trying, and then you stop trying because it's too much effort to continue when you're not getting there
Scott Benner 43:37
Right. And then I think the mistake is then the doctors see the give up, not the work, and they go see they don't care. They're non compliant, or whatever, like instead of like, like, I'm talking directly to doctors now, instead of seeing that you did not give them the right tools, and all that effort they put in, felt like it was fruitless, like it was never, ever gonna work out. And so why try this? Is just diabetes. I'm just going to let it be what it's going to be, and that's where you get like, Jesus, take the wheel from people, and then they exactly, they spiral. I'm always going to say that with the right tools and the right knowledge, people can do this, and that a lot of people who end up or people I'm thinking about right now, who I've watched online struggle, who still believe that they're brittle. But when you look at the their story, like, really stretch out their story, they started with bad info. It was reinforced along the way. You're not doing what I'm telling you to do. You know, like, blah, blah, blah. They go back and beat their head against more walls. The doctors should tell them they must not be listening. This would go back and forth, back and forth. Their blood sugars go up, they go down, they go up, they go down. The doctor says, You're brittle. They believe they're brittle. Because what they need to know, they need to think something's happening. You know what? I mean, that's diagnosable, that you know is written down in the book somewhere, right? You know, eventually they just give over to it. You. But the psychological implications do not stop afterwards. There are a couple of people I'm thinking of like you have all of my compassion, like they're spiraling and they can't find a way to listen to what we know now, probably because of glucose sensing technology and everything that they're very likely not brittle. They're just their settings are wrong. They eat at the wrong times. They use insulin incorrectly. They don't know what they're doing, and it's not their fault, and it looks like it's all out of control. And then then that psychological impact, I think, can stop them from stepping back, seeing the light, starting over again,
Ellie 45:39
exactly. Yeah, it's tough. It is. And I think, you know, for me, there was a goal in mind, and I knew I wanted to have a family, and so that at me going, and that's why I reached out to Jenny for that first time, was I need that restart because I'm stuck and can't figure out my way out of it. And like you said, I was lucky enough to do you know, to be able to afford her services, and to do that and continue working with her and with my pregnancy, I will say too, when you have that motivation, and if anyone you know thinking about Becoming pregnant, there's a huge difference about from thinking about becoming pregnant and being pregnant and the diabetes motivation. Tell me, I think when you're thinking about it, you're you're definitely trying, and, you know, I got to that place. But when you are actually pregnant, that motivation sky rockets, because these kids are growing inside you, and you don't want to mess it up for them. Getting teary eyed. Go ahead, but take your time. You want to do well for you so you can be there for them. You know, in my experience, you want them to be as healthy as they can possibly be. And so, you know, I had the lowest A, 1c, in my entire life, during my pre can see, and it was hard, but I did it, and that reminds me today that I continue to do it, and there's still challenges. And I'm not going to say I'm as tight now as I was then, but I'm a heck of a lot better than I was years before.
Scott Benner 47:20
What made you cry? I think just
Ellie 47:22
thinking about, you know, parents wanting to do everything for their kids and the best that you can do. And I think what you were saying before of being kind of separate, separated from having diabetes, but being a parent and wanting to do everything you could and you can do for Arden, it's that same feeling of you're willing to stay up in the middle of the night and watch her graph. You know, we're not always willing to do that kind of thing for ourself. I
Scott Benner 47:53
don't even know how you're supposed to, like, how are you going to live and not sleep,
Ellie 47:57
right? And at the end of the day, you can't, right? It's just
Scott Benner 48:01
It sucks. I mean, in case people don't know, diabetes sucks. Wasn't sure if everybody knew or not. It's also tough, because you can come to this conclusion, or at least I did at some point, that how do I say this? The podcast is in a place right now that you all don't know it's in yet, because I haven't spoken about it enough yet, but I'm still having the experience, so I can't talk about it yet, but that experience is hard, and going off to college and becoming an adult and taking more responsibility for herself, and how well that goes in a lot of circumstances, and how poorly it goes in others, and where the pain points are. What I had to learn to shut up about, what I had to learn to push more about, like, how important communication was the relationship we had previously, because I had to trade off of a little bit of our goodwill during the bad time. Does that make sense? Right? Had I started off with a bad relationship with her and then hit one of those speed bumps? We wouldn't have gotten past that. She would have written me off. But I had enough good will that I could, in small places, assert what needed to be asserted without overwhelming her freedom, her growth, which is also very important. And so why we spend so much time talking about that stuff with Erica, and she and I are still growing through it, and I'll probably start talking about it maybe the end of this next year. But you know, the one thing you can be comfortable with about the podcast is like, I don't, like, have a thought and just randomly blurt it out very frequently at all. Like, if I'm saying something, I've lived through it. I believe in it. It's I've seen it work over and over again. It's interesting to think that, like a part of this, like, I'm still growing through being the parent of a child with type one, even though she's going to be 21 this summer. I hear that, and you guys are all helping me. I. Because I get to absorb all your good stories, your bad stories, your you know, your like, your tales of like, Oh, be careful here, you know, like, that kind of stuff Arden has been able to avoid. I just talked to somebody the other day whose kid got an eating disorder because of how a parent pushed a certain eating style on the kid. And I knew not to do that from recording with 50 people who told me about how it worked out for them between that and everything else, from like the first person, like Arden uses a Pedra because a mom with a blog told me to try it 10 years ago. I didn't know about it. Dexcom is the thing I learned about through another person, and I ignored it, and then it came up again in a doctor's visit. But because it came up and I had heard about it before, like, I slowed down enough and heard what they were saying, you know, like, that kind of stuff, trying to make content for you guys helped me. You know, I don't know, like, actually stop and look at data, because I'm not really a data person, like, and that's strange, like, I'm not a sit down like and break the data apart person like, I do it visually with the graphs, but I'm not very good at looking at the numbers and where they are, etc. I'm making in a new series with Kenny. Do you know Kenny Fox, the fox and the loop house episodes? I'm making a new series with him right now, and there's still things that he's explaining, and it sounds like Charlie Brown's teacher to me when he's talking 100% and so I'm just like, I don't know what he's saying. Hopefully someone does. I'm not going to be the one who understands this. I see it a completely different way. But you guys help me with all that, like the conversations and the feedback and, you know, everything, like, even people have been shitty to me, have been helpful to me at some point or another. Like, and not always. Sometimes people are just mean, but sometimes they say something. You're like, oh, that's, you know, it's valid. So it's been a really interesting experience. Can I be honest with you about your note? Yeah, it's too long. I didn't read it. So are we getting are we getting through it? We are. It's all good. Can I ask about glps. Yes, that was the last thing on my list. Don't worry, go for it. When did it come up? When did you start trying? I started
Ellie 52:07
trying almost a year ago. I think it was maybe February. I did not start it while I was still breastfeeding. I waited till I finished, and that was really my time that I wanted to start it, my endo had brought it up as an option to start on. I started with ozempic first, and I'm now on one jar. Oh, it just works for me better, yeah, and I've had a really great experience with it. I mean, some ups and downs, no no real sickness. I've had nausea here and there, but it's been, it's been a big help. In a lot of ways. My basal dropped by 30 units a day. Wow,
Scott Benner 52:55
it's awesome. Did you have weight to lose? Or was that not part of it? It
Ellie 52:59
wasn't the main goal, but it, you know, was a welcome, welcome thing.
Scott Benner 53:04
Everybody over 30 is like, listen, it's cool. I took it, you know what? I mean, it wasn't a problem
Ellie 53:11
that desperately needed, but it was all right, yeah, it's, it's just helped so much. And again, you know, I was mentioning before, like, we, we keep changing in life circumstances, you know? Now I'm I work full time. I have twin, two and a half year old. I'm busy, and so it's between GLP one and loop. I feel like it's that extra help I need in the background. You know, I don't always Pre Bolus. I love to always try. It doesn't always happen, but I'm not having such negative effects when it doesn't happen, yeah.
Scott Benner 53:43
What does that mean? Like, what's your spike? Like, more like, 180
Ellie 53:47
instead of 252 70, yeah,
Scott Benner 53:51
yeah. How about your PCOS? Is it helping with that?
Ellie 53:54
I think so. It's a little hard to tell, but I think overall, in a bunch of different areas. I think it's helped. I think, you know, the weight loss has helped with the PCOS. Because of it, some of my labs have improved. So I think all it's all around been a positive thing for me, being on it.
Scott Benner 54:13
What were your PCOS symptoms? Did you have acne? I did
Ellie 54:17
not. It was really just irregular periods.
Scott Benner 54:22
Were they painful? No, they were just sometimes heavy. Okay, like, heavy, like, did you ever need iron infusion or anything like that? No,
Ellie 54:29
no, thankfully, I didn't, and it's one of those things, like, at the time, I told my doctor about they checked for it and found it. But none of us really know what anybody else is experiencing when you say you have, you know, heavy people, like, what exactly does that look like? But that's what I was saying, and it made sense from the diabetes picture. So that all really helped.
Scott Benner 54:52
Yeah, that's good. I'm glad you got what you needed. It's awesome. How did you get your insurance to cover it? Are you paying cash?
Ellie 54:58
I'm really great. Grateful my insurance is covering it, and knock on wood, I hope they don't dig into it too much. They have not asked. They haven't they just approved it right away.
My doctor keeps saying that too. He's like, this is not going to get covered. This is not going to get covered. I'm like, just, just write it. I already called them and they said it's going to be fine, and it has been. He's like, Well, don't, don't poke around too much, because they haven't noticed that you're type one. I don't know if they haven't noticed or not, but they're covering it.
Scott Benner 55:35
You shut up and do it
Ellie 55:39
on the funny thing about it, it's a really wonky program, and I can't really talk about it on here, but I have to get three months at a time for it to be affordable. It's a special diabetes program within this insurance okay? And so even when I'm testing out a dose, let's say I have to get it three months worth for it to not be like $500 it's $50 for three months. That's awesome. I can't complain. I'm very grateful. Yeah,
Scott Benner 56:08
I pay, I mean, we have good insurance, obviously, but I think I pay the co pay $20 I think I pay for a month. So you're doing better than me, because I'm paying 60 every three months. Close enough? Yeah, no. I mean, let's close enough. I'm over here. I'm looking for that. $10 is what I'm saying. But no, that's awesome, like and you know, people are finding a ton of different ways to get it, and I do think that it's going to get easier over time. The companies want to sell the drug, obviously, right? And there's such a demand for it, I don't see how the insurance companies can Stonewall on that. Ellie, listen, I got up this morning and I I put on jeans and a white t shirt. I would not have worn a white t shirt for money or love prior to me finding a GLP medication. Yeah, oh, I hear you. In a million years, I would not have and I happened to walk past Arden just brought her stuff back from college, and so there's a number of items strewn about my house. Still, if nobody's ever had a kid come home for college, you just they find, like, open space and drop things like mattress pads and ice makers and things like that. Like things they just like, suddenly don't need anymore. And they're like, where did we put this? Is this a good spot? I'm like, in the middle of the floor. No, it's not a good spot. One of the things that's abandoned is like, the back of a door mirror. And I walked past that mirror and I thought, it doesn't look like me. Yeah, and I feel so much better. And it's not just because I lost weight like the DLP is helping me in a this has been Christmas week for us. I have probably, in the last seven days, had more chocolate chip cookies than I've had in the last two years. I've eaten pizza twice. I've had pulled pork at a meal a number of other, you know, things, and my weight hasn't changed in the last seven days, and I have not once found myself in the bathroom talking to Jesus, yeah, that hasn't happened, and none of the terrible things that used to happen to me. So when people ask me, like, what does GLP do for you? Like, I'm like, I don't really know, but my life is better. So exactly
Ellie 58:27
I feel the same way I feel like, and you know, everyone who's been on has talked about the food noise reduction, but when I had heard episodes people talking about that before I started, I thought to myself, like, that's great for them, but that's not gonna be the case for me. And then when I took it, once the noise stops, you don't realize how loud it is until it's gone. How
Scott Benner 58:54
about the fact that I can still taste things, but it doesn't taste like rainbows, sunshine and orgasm all at the same time, like, it just tastes like food, right? Somebody can give me a slice of pizza and I can eat it and go, that was good, and I'm full now. Like, my brain's not yelling, salt, fat, do it again, right? It still tastes like pizza. And then I hear people who are new to GLP, they'll complain about it, like, well, it's ruining food for me. And I'm like, I think you're missing the point of this. You're taking this because you you need it, like, you know, for whatever reason you need it for part of your problem is that that pizza tastes like crack cocaine to you, like, like, that's part of the problem, you know. So take it, you know, food, noise, whatever you want to call
Ellie 59:38
it, right? And I, I'll say for myself, it took a longer time, and I think a lot of people don't give the drugs enough time to adjust in their bodies, like I stuck at the same doses before I went up for longer than that month to adjust to it, to feel good being on the dose and. And for me, that was very helpful. I'm going
Scott Benner 1:00:03
to tell you that I haven't quite found a way to, like, articulate it yet, but I've been thinking about this very same thing, which is, like, people talk about, like, like, I'm not saying if you have like, a real problem, like, if you're one of the people who gets like, you know, blocked intestines or something terrible. Like, I'm not saying, like, power through it. Ellie, are you okay with this conversation? I didn't take a reasonably human looking poop for like, nine months. I did not give a Yeah, I feel better. I don't know what's happening right now, but I figured I, you know, it took 50 years to get here. It isn't going to be like, you know, rainbows and sunshine getting away from it exactly the way the inside of my body adjusted and how whatever horribleness was in my cells was coming out. Like, it wasn't pretty, but I didn't give up on it. I wasn't like, Oh no, this is unpleasant. I'm gonna stop. But I've heard people do that like, Oh, I'm not, you know, like I'm running to the bathroom. I'm like, Well, yeah,
Ellie 1:01:00
right, but give it a little bit of time and see if you get benefit out of it, because if you are feeling better everywhere else, then it's it's worth trying to keep going with it. For me, I was pretty lucky. I mean, I just felt queasy. I mean, it really felt like morning sickness. For months, I'd wake up, I'd feel nauseous and not really want to eat anything, and started eating breakfast way later in the morning. I used to be someone who woke up and needed to eat pretty much right away. That went away. But you know, as I adjusted to different doses, that went away too for the most part, there's still days right after I take it, I get that. It hasn't been too, too rough. It is
Scott Benner 1:01:41
so funny that you bring this up because the other day, like a personal friend of like somebody I know personally, like a person I was in the room with said, you know, I wake up every morning and I feel nauseous, and I'm like, Well, what happens then? Like, well, I get up and I eat and it goes away. And I'm like, Uh huh. I'm not saying people are soft, and I'm certainly but, but if she said, Well, I don't want to feel nauseous, and I'm like, too bad,
Ellie 1:02:05
right? Some things are worth it. When I saw after the first week, I don't remember how much my basal had dropped even after the first week, it was significant, though, I mean, and my resistance, and I'm sure inflammation and all of those things are better being on it, oh, a million
Scott Benner 1:02:23
times. You know, you brought it up earlier about, like, not liking to insert the CGM, right? And we don't talk about it a ton on here, because it it wanes and it ebbs and flows in her life. But at the moment, is very bad. Like Arden has a significant needle phobia. Like a significant needle phobia. It got to the point where she was off at school, not having a good time at school, and, you know, I think, like, stress and was piling up on her. And one of the things that, like, she was just like, I like, her needle phobia got worse, yeah, and she's like, I can't do this. So I'm not sure if I've talked about this on here or not, but for about a month, every Sunday, I drove from New Jersey to Pittsburgh to give Arden, her her GLP medication. I'd get up in the morning, drive six or seven hours, give it to her, spend the hour of like crying and pleading that because she's really scared, and then it stops immediately. Like, if nobody has a needle phobia, like, if you've never really seen a real needle phobia, like, good for you. It's like she's begging for her life. Like, do you know what I mean?
Ellie 1:03:30
Oh, I 100 I have, I mean, I, I've never really called it that, but that's what it is. Yeah, I totally relate to her. She is not alone. And people often think, because we're diabetic, we're not, we don't have an issue with needles, and it doesn't go away. That's
Scott Benner 1:03:45
the dumbest thing I've heard people say. Is like, Oh, she's had diabetes forever. She's not over that yet. I'm like, no, she still has a phobia of needles. Like, you know, like,
Ellie 1:03:54
I don't give myself my GLP one the first time I tried, I tried to give it, and I hit the button, and I didn't know what to expect, because, you know, it's like, spring loaded, or whatever it is, and I jerked back, and it just squirted all over the floor. I was devastated
Scott Benner 1:04:13
for like, that was very expensive. That was very expensive, and
Ellie 1:04:17
I didn't know I had to wait another week, because I wasn't sure if I got any of it, and I was, oh, eyes, not to give. Give it again. It was my very first one, so I didn't want to give
Scott Benner 1:04:28
more than the dose. That's upsetting. It was so frustrating.
Ellie 1:04:32
After that, I was like, I can't do this, honey. You do it.
Scott Benner 1:04:34
To describe it like, if you've ever watched a bad movie where someone's about to execute somebody. And the begging that starts like, that's how she begs, like, no, no, no, wait, wait, wait, wait, I have to say one more thing I have to do. No, no, like that, like that. It's terrible, right? And so it's hard on her. It's hard on my soul, yeah? And you think like, well then Scott, don't do it. Well, you should see the physical health benefit. She's getting from it. It's not a thing she can avoid. But in those last few weeks before she came back from school, I'm gonna stop doing this. And I said, All right, Arden, you know what's gonna happen? It's up to you. Blah, blah, blah. And she stopped, and I stopped driving to Pittsburgh, and, you know, watching the Eagles games on my phone, like, sort of while I was driving. You know what I mean? By the way, I know that's probably not legal, but they're having such a great season, and I'm trying to be a good dad and like, something's got to give somewhere. She stopped, and now she's home. She got home, she was home for three days, and she said, I gotta start taking that job. He again. And I was like, Okay, now, if a person who feels that way about it and is still that young understands the impact it's giving to her, like it's significant, like her acne comes back with a vengeance. Without it, her blood sugars are significantly difficult to deal with. It takes a lot more insulin, everything for her. And I'm not saying it's everybody, but for her, everything is better with it. I hope people find value in it. They're going to be plenty of people, by the way, don't respond to it. It isn't good for them. I'm not saying it's good for everybody, etc, and so on. I mean, if you've had diabetes for a very long time and you have, like, any gastroparesis symptoms, like I would, I would be very, very cautious, like that kind of and that's not coming from an from a study or anything like that. Just seems to make good common sense to me. But for the people, it's going to work for and for the people in the future, I mean, and when they figure out how to put it into a pill form, which I'm pretty sure Novo is working on, right? Novo makes ozempic, is that? Right? Novo makes exempic, I think they're working on a pill form that's going to be more aggressive. Because right now the problem is there are pill form glps, but they just don't work as well as the injectables, right?
Ellie 1:06:45
Yeah, I honestly just wish they would give it in vials and not. Ozempic is a pen, which I preferred to. Benja, Rose spring loaded thing. I wish it was just in a straight up vial. I would much prefer that. Ellie,
Scott Benner 1:06:59
I can tell you how to do that. That's how we do it. For Arden, do you okay? So we go on Amazon. All right, listen to me. First of all, there's a phase one trial for Novo Nordisk experimental obesity drugs, blah, blah, blah, 13% weight loss three months. It's a GLP Lake pill. So they are working on it. You all do not go to Amazon and me up on this. Okay? We go to Amazon and we buy vials. You can get little packs of sterile, brand new medication vials, right? Then we balance the Manjaro pen over top of it, hold it firmly so it doesn't kick out, and then hit and hold the injector. The injector from the benjaro pen goes through the rubber in the vial, and then it's like you're almost like you're milking a snake. And then it just squirts the bonjaro into the vial, then you draw it back out with an insulin needle and put it
Ellie 1:07:55
in. That is brilliant. I'm so glad I mentioned that. Yeah,
Scott Benner 1:07:59
so, and by the way, that's not my idea. It's somebody who told me about it, who learned about it from YouTube. So well, kudos to whoever figured that out. And it allows you to modulate the amount, because the 2.5 of Manjaro is a little too much for Arden, because she's not looking for the satiation part and everything. So we are able to give her a little less also, she does better with the insulin needles than she does with the injector. And for those of you out there, Arden describes being hit with the injector as lightning flying through her leg.
Ellie 1:08:32
It burns, I don't know if she has that too, besides the jolt of you know, the injector kind of launching. For me personally, it burns terribly when it goes in, yeah,
Scott Benner 1:08:44
yeah. She says it feels like lightning. She's not a fan, and worth it. I still have enough fat on my midsection that, like, I can find, like a real, like jelly place and stick it in, and it's, you know, it's not bad. But if that ever goes away, I'm gonna be screwed too, and I'm not going to stop taking it. I just want you all to hear me. I'm going to find a maintenance level of it and stick with it because of just the digestion part. And you guys know I don't have to get, like, iron infusions anymore, because I'm on it. If I eat something that's not slightly from what my body doesn't like, I don't find myself in the bathroom talking to God and promising him things if he'll just let this part stop, which was a pretty big part of my life when I was younger, and not because I was crazy, overeating or anything like that. So my body just didn't do well with a lot of foods that now it it handles just fine. So anyway, good luck to everybody. 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. How about that? Do that off the top my head, like it's nothing, and I haven't said it in a long time. Do you guys know I pre record that stuff and then we drop them in as files.
Ellie 1:09:56
I assumed as much, but you sounded just I wasn't sure there for a second. It. You jumped it in right now.
Scott Benner 1:10:01
So for years and years, I'd say it in every episode. And then one time online, this guy, I said that must have said on the podcast. This guy online goes, Wait, that's not pre recorded. And I went, Wait, he thought it was pre recorded. Why the hell am I not pre recording it then? So I did, I think three slightly different versions of it, and then we just mix and match them as we make the episodes. That's great, all for efficiency. What I'm saying is I can't believe I just said it without thinking, because I haven't said it like I don't know that I've said it in like, a year and a half, actually,
Ellie 1:10:37
that's crazy. Oh, good job. Oh, good this
Scott Benner 1:10:39
is where I get my pats on the head. Just sad. I'm gonna ask you one last question. First of all, I want to make sure, did we go through everything that you wanted to go through? We did. Okay? I'm gonna ask you a question as an adult. Okay, if I were to put effort this year into making content that encapsulates each episode of, like the Pro Tip series, for example. So, like, if you got like a 20 minute talking head episode from me about each episode of The Pro Tip series, but it was also in video on YouTube, do you think that it would reach new people, or am I just a podcaster and that's I'm not going to be able to do that,
Ellie 1:11:18
I think it absolutely would reach new people.
Scott Benner 1:11:23
I really do think I'm going to try. There
Ellie 1:11:25
are some people, and I know you'd still be talking, but that visual component, I think, helps a lot of people process watching something. And I also think that there are people who may not be in the Facebook group and might not be listening to podcasts that would very likely find you through YouTube. I
Scott Benner 1:11:45
want more people to be able to find it, and I want it to be more accessible for non podcast people. So like podcast people don't care. They'll sit and listen for an hour. That's what they do, you know. But for people who have become accustomed to 62nd videos and they think that's content, or people who've been accustomed to YouTube and there has to be visuals with it, or that's not the kind of content that they get served. Even, like, I can't sit down and remake an episode of the podcast, like, visually, like, and we've actually tried before to animate them, oh yeah, people don't respond to that. It doesn't work because I tried, like, I took a couple of, like, defining diabetes episodes and had somebody like Punch and Judy Marionette, like Marionette, like, animate them, just so there'd be video running in front of them. Didn't matter, like, people didn't care. So I'm trying to find a way to find those people, because they're out there and I see them like you. I mean, you talked about coming in through a different pathway, but I get to see how people make it to the Facebook group, and they make it through friends, through other Facebook groups, through Reddit, through their doctor, through a person they bumped into at a store. You got to it through Jenny. And I just think that there's so many more avenues out there, and people that I think would find you know it interesting or valuable, or entertaining or whatever, and try to figure out how to get to them. So anyway, all right, now I need something to sit in front of. It doesn't look like I put too much effort into it, but it looks like I put a little bit of effort into it. Isn't that what a background of a YouTube video is, that's
Ellie 1:13:15
pretty much I mean, you could get some AI generated something there make it a little more exciting.
Scott Benner 1:13:24
Seems like a lot to me. That's my other problem too. Is that like, I'm not like, of that generation like, so like, I'll do it. I'm gonna do it under protest. Anyway, I just wanted to know if you thought, if you thought, what you thought of that. So I appreciate
Ellie 1:13:38
you. Thank you. Think that would help reach another group of people. Thank you. Well, I
Scott Benner 1:13:42
appreciate very much all you sharing this with me and letting me chat extra today and helping me end my 2024 I don't know how many times I recorded this year, but I'm gonna guess it's somewhere along the lines of probably 350 episodes this year, maybe, wow, maybe so, and you guys haven't heard. I had to look, I don't know, but I think I have like, 70 ready to go that are done and edited, and you guys haven't heard yet. And 22 episodes in that folder, two in that one. There are eight and that one, and then over on Rob's server, he has, oh, wow, Rob has been working hard. There's 16 over there that haven't been touched yet. I don't there's like, 50 or 60 that are available right now, that are ready to go. And like I said, I recorded three yesterday. I did you today. We'll do one tomorrow, one the next day, one on Friday the following week, 1235, yeah, five times the next week. I probably record every day. My God, somehow I'm recording three times, two days in three. Oh, my God, on Monday, on Friday. All right, I'll be all right.
Unknown Speaker 1:14:57
That's a lot. It's amazing. I'll be all right. It's. Be
Scott Benner 1:15:00
fine. Thank you for this. Really, it was very nice of you.
Ellie 1:15:03
No, thank you and Happy New Year to everyone for whenever you're listening to this. Yeah, they're gonna be listening in July. But that's nice. That's fine. It should be happy then too. Yeah, I hope
Scott Benner 1:15:13
your New Year's going well, hold on one second for me. Okay. Okay. You a huge thanks to Omnipod, not just my longest sponsor, but my first one, omnipod.com/juice box. If you love the podcast and you love two plus insulin pumps, this link is for you. Omnipod.com/juice box, us. Med, sponsored this episode of the juice box podcast. Check them out at us. Med.com/juice, box, or by calling 888-721-1514, get your free benefits check and get started today with us. Med, this episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. 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. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com, you.
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#1492 Where Is Soho?
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
Ruby, a 28-year-old Welsh voice and theater actor, overcame T1D anxiety; now she advocates on TikTok with her Medtronic pump.
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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
Welcome back, friends. You are listening to the Juicebox Podcast.
Ruby 0:14
Hi, I'm Ruby Valentino. I'm from South Wales. I'm an actor and a singer, and I've had type one diabetes for four years,
Scott Benner 0:22
nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box, so make sure you check out drink AG, one.com/juice box. To get this offer, don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com Are you an adult living with type one or the caregiver of someone who is? If you are, I'd love it if you would go to T 1d, exchange.org/juicebox and take the survey. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa. This is the way t 1d exchange.org/juice box. It should not take you more than about 10 minutes. This episode of The Juicebox Podcast is sponsored by the twist A I D system powered by tide pool that features the twist loop algorithm, which you can target to a glucose level as low as 87 Learn more at twist.com/juice. Box. That's twist with two eyes.com/juice. Box. Get precision insulin delivery with a target range that you choose at twist.com/juice, box that's t, w, i, i s t.com/juice. Box. Today's episode of the juice box podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate. And waiting for you at contour, next.com/juice box. The episode you're listening to is sponsored by us. Med, us. Med.com/juice, box, or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med,
Ruby 2:36
Hi, I'm Ruby Valentino. I'm from South Wales. I'm an actor and a singer, and I've had type one diabetes for four years. Four years. How old were you when
Scott Benner 2:45
you were diagnosed? Let me do that again. It's not been four years. Wait, what it has
Ruby 2:53
14 years. Oh,
Scott Benner 2:54
because Ruby, that's totally staying in just so you know. So how old were you when you were diagnosed?
Ruby 3:00
Nerves. Um, I was 13, so you're 27 Yeah, no, I'm 28 but I was like, a couple of weeks before my 14th birthday.
Scott Benner 3:10
Oh, I see. Okay, wow, all right, so 1314, years old, you've had it half your like, half your life, yeah, it's been diabetes, and half it hasn't been. It's weird thinking of it like that. Have you thought of it like that in the past?
Ruby 3:24
No, now I have. I've seen other people say, Oh, I've had it half my life, and I was, I've been like, wow, that's a long time, and now I'm at that stage. I've just realized that change.
Scott Benner 3:32
No kidding, how did you learn of diabetes? Like, did you get very sick? Did somebody in your family sniff it out? Or what happened?
Ruby 3:39
Yeah, my mum. So I lost a lot of weight, and kids in school were kind of bullying me, saying I had a Ed and saying that looked very skinny, but I was eating so much I was healthy. So my mum was like, oh, there's something wrong with her. So she spoke to somebody in her class, she's a potter, and they said, that sounds like type one diabetes. Does she going to toilet a lot? And my mum was like, yes. And so she got a home testing kit from boots, which is a pharmacy in the UK. She spent a bit of money on it. It was expensive, and it came back saying, hi, hi. So she called 111, and they were like, get her in immediately. It was a quick turnaround, and I got diagnosed with type one diabetes pretty much on the spot that
Scott Benner 4:24
quick. So your mom chatted with some people. Somebody said it sounded like diabetes test kit. You're diagnosed. Is there any type one in your extended family? No,
Ruby 4:33
no. My nan and grandad had type two as they got older, but no type ones. What about your family? Because I know your your daughter's got it right,
Scott Benner 4:41
she does. So my daughter has type one. She was diagnosed when she was two. She's 20. Now. I'm adopted, so I'm as far as I know, on my side, on my wife's side, there's a lot of autoimmune stuff, like sprinkled around people like, like celiac or Crohn's. There's. Some anxiety, there's some depression with people. There's a there's a person farther out that might have Bipolar, like, there's stuff like that that's like, auto immune or auto immune adjacent. My wife has hypothyroidism. Both of my kids do as well, interestingly enough, like some of the problems people have with PCOS, like that kind of stuff that seems to travel through some of the women on my wife's side too.
Ruby 5:24
Yeah, it can be interlinked, right? Sometimes celiacs have type one and things like that. So it could be something there. Now
Scott Benner 5:32
I think so I talk to a lot of people Ruby, and I ask everybody the same question about their extended family, and often they find sometimes people say, Oh, no, there's nothing. I think you'll chat with them for a while, and they'll say, oh my. My uncle has Viti Lago, for example. And I'll be like, Well, that's an autoimmune issue. And they go, oh. And then as they start to really, like, think about it, they find more and more.
Ruby 5:53
Yeah. No, nothing. I had chicken pox when I was young. My mom thinks that could be something, but we've all had chicken did you have it right before your diagnosis? No, no. I was like two normal age. Oh, but I think I had it quite bad. I don't know. There are other means that people think you can get it from too, like you can get it from trauma. Apparently, don't take my word for that. I heard that.
Scott Benner 6:13
No, I've heard people talk about that too, like a giant shock to the system. Kind of throws your immune system into overdrive. Yeah, listen, you're never gonna really know. I have a question, though, before we move on. Did you say your mom was a booter? And what the hell does that mean?
Ruby 6:27
A Potter, pottery? Oh, a potter, a booter.
Scott Benner 6:33
Oh, no, Potter. I'm sorry.
Ruby 6:36
Language barrier, accent. Barry, so we're gonna get over it. She,
Scott Benner 6:38
like, does that professionally, or she just does that, like, as a hobby. She's
Ruby 6:42
a ceramic artist, so she makes her own things and sells them, and then she teaches as well on the side.
Scott Benner 6:47
That's awesome. Very cool. Yeah, all right, so you're diagnosed, they take you to do you guys say to hospital? I don't say the in front of hospital, right?
Ruby 6:55
Some northerners do, I think. But yeah, the hospital, I say?
Scott Benner 7:01
You do say the hospital. You don't say hospital. Look at you. You and I are going to get along much better. What's it like being diagnosed? Do you begin to take over, like your management? Do you do it with your parents? Your mom? How does that work? When
Ruby 7:15
I was first diagnosed? Yeah, my mom went a bit mad and tried freighters to cure me the most loving way possible. We were trying cinnamon. I tried Reiki at one point, obviously she was making sure I was doing my insulin and doing it properly. But in the meantime, she was trying to find a cure and reading things online. But obviously there is no cure type one. Wait. So we went down. Hold
Scott Benner 7:38
on a second. Like she actually said, like, we're gonna go to our Reiki healer. Yeah,
Ruby 7:43
and you know what, my blood was amazing. It dropped.
Scott Benner 7:50
I was hypo. Probably you get super relaxed, don't you think? Yeah, there's
Ruby 7:54
something, something good, I mean, but I don't think it was type one, but it was definitely good for
Scott Benner 7:59
my levels that's awesome. Is your mom, what we would call a hippie. She was a punk back
Ruby 8:04
in the day. I guess she's very artistic, so maybe I
Scott Benner 8:08
unfairly know that your father was in a band. Is that right? Yeah, yeah. Okay, so I'm imagining your parents correctly, then, is that what you're saying?
Ruby 8:17
Probably, yeah, we're quite out there. Do
Scott Benner 8:22
you have other brothers and sisters?
Ruby 8:23
Yeah, I've got a sister. She lives in Sydney, and she's getting married next year, which is exciting. Congratulations. Yeah, really excited. Are you going, yeah? Well, you know what, it's in the bush. Have you ever seen I'm a celeb. Get me out of here. Yeah. So I'm terrified, because I'm a city girl. I'm obviously going to go and love it, but we have to camp for like, three days, so I'm going to be terrified, because I hate insects and I hate bugs, and I'm not looking forward to the insect side of it. Which one
Scott Benner 8:53
of your irrational fears has the hold of you? Do you think there's going to be a snake in the toilet or a spider or what is it you're worried about? You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works? And I picked it up. I was like, hello, and it was just the recording was like, us, med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it, push this button if you want us to send it, or if you'd like to wait, I think it lets you put it off, like a couple of weeks, or push this button for that, that's pretty much it. I push the button to send it and a few days later, box right at my door. That's it us. Med.com/juice, box, or call 888-721-1514, get your free benefits checked now and get started with us. Med. Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new islet pump. Check them out now at usmed.com/juice, box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox podcast.com, to us, med and all of the sponsors. The contour next gen blood glucose meter is sponsoring this episode of The Juicebox Podcast, and it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. That's right, if you go to my link, contour next.com/juicebox you're going to find links to Walmart, Amazon, Walgreens, CVS, Rite, aid, Kroger and Meyer. You could be paying more right now through your insurance for your test strips in meter than you would pay through my link for the contour next gen and contour next test trips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now, even with your insurance. And I don't know what meter you have right now. I can't say that, but what I can say for sure is that the contour next gen meter is accurate. It is reliable, and it is the meter that we've been using for years. Contour next.com/juice box. And if you already have a contour meter and you're buying test strips, doing so through the Juicebox Podcast link will help to support the show. The brand new twist insulin pump offers peace of mind with unmatched personalization and allows you to target a glucose level as low as 87 there are more reasons why you might be interested in checking out twist, but just in case, that one got you twist.com/juicebox, that's twist with two eyes.com/juice. Box, you can target glucose levels between 87 and 180 it's completely up to you. In addition to precision insulin delivery that's made possible by twist design, twist also offers you the ability to edit your carb entries even after you've Bolus. This gives the twist loop algorithm the best information to make its decisions with, and the twist loop algorithm lives on the pump, so you don't have to stay next to your phone for it to do its job. Twist is coming very soon. So if you'd like to learn more or get on the wait list, go to twist.com/juice. Box. That's twist with two eyes.com/juice. Box. Links in the show notes. Links at Juicebox podcast.com. Rats. I hate Rats. Rats is your concern? That's awesome. Yeah, I
Ruby 12:44
love animals, and I think every animal has the right to live. And, you know, I try and be as meat free as I can, but I just don't want to see a rat.
Scott Benner 12:51
Hey, listen, I'm with you. I interview a lot of people from all around the world, and I'm constantly asking people in Australia. I'm like, There's snakes and spiders and like, yeah. Some people act like, Oh no, no, no. But then once in a while, you'll get them to tell a story of, like, no kidding, like, the time they sat down on the toilet and there was a snake in the toilet or something. Yeah, I'm telling you, look in the toilet before you use it in. Haven't got anything
Ruby 13:15
like that here, hopefully. I mean, today I've seen a tick tock video of a rock coming out of the toilet in New York, and I was like, Okay, I'm never
Scott Benner 13:22
going our rats over here on the East Coast are pretty, uh, stout, I would say, All right, so you have a sister, she doesn't have type one or anything else, right? No, no, okay. What's your management like when you first start out that they give you just like needles and vials. Do you get pens? How does it work? I
Ruby 13:39
was on Nova rapid pens. And I did that for 13 years with a blood kit, the old fashioned blood kit. And then I didn't switch to a CGM until 2017 which was the Libra, yep, and it was good, but I was very self conscious of the Libra at first, because I wanted to hide my type one and, you know, not speaking for you, but probably your daughter did too, right? Because I feel like I feel like a lot of young girls are a bit self conscious
Scott Benner 14:05
of it. She was so young Ruby, I don't think she she didn't know any better. She doesn't think about diabetes that
Ruby 14:10
way. Yeah, amazing. That's good. I get so many people on my content, on my videos, saying, oh, you know, I'm embarrassed. I take it off and I pretend I don't have it. And I think now I don't think like that at all. I think maybe because I was diagnosed as a teenager when I started to go out, that's why I was trying to hide it. Maybe, yeah, so I was embarrassed to wear the Libra at first, and nowadays you get all sorts of influences choosing to wear them. It's cool. Yeah.
Scott Benner 14:38
Does that even help you as an adult? Does it make you feel more comfortable when you see other people
Ruby 14:42
doing it? Oh, yeah, absolutely. And I love wearing it now. I'm really proud to be a type one diabetic, because it makes you you, and it makes you unique, and gives you a sort of strength, an image of strength. What do you do professionally? Tell people I'm an actor. I do a lot of. Voiceover acting. I did Macbeth last year on tour, which was fun across the UK, and just in a radio play,
Scott Benner 15:08
I keep thinking, I want somebody to come get me for a voiceover. I don't know why they want. I have a lovely speaking voice. You do, yeah, and it's not never does someone come. Like one time I got teased. I'm not calling the guy out, but I had the creator of a like, a Netflix cartoon on last year, and his daughter has type one. His daughter, by the way, it's the weirdest story. My daughter's name is kind of different. It's Arden, and there's not a lot of Arden's, and there's not a lot of people in the world with type one diabetes. And this guy, who I really did enjoy, his daughter's name is Arden, and she has type one. It was crazy. Oh, my goodness, yeah. But anyway, he's like, I'm gonna come get you for season two. And then he didn't call. I
Ruby 15:46
just want to say it's okay. What about me? Yeah.
Scott Benner 15:49
Oh, trust me, Ruby, if he would have known about you, you'd be in the fairy show. For sure, you would be, as a matter of fact, I probably just got you a job in season three of fairies. But not me, is what I was saying. One day, one day, he did hire a number of type one actors.
Ruby 16:03
Oh, I love that. Well, they've got that type one diabetic film coming out, right?
Scott Benner 16:07
Yeah, Kelly, what's Kelly's last name? Damn you know, I don't It's okay. She, yeah, she's a type one. And I think she wrote it and is directing it. Kelly, bacon, you got it right, damn it. Kelly, hold on a second. I'm sorry. I know she listens, and now I feel bad. How does diabetes intersect with working is what I was wondering. This
Ruby 16:28
is what I'm a little bit stressed about with my pump. So when I did my first film two, three years ago, actually, sorry, let me backtrack when I did a film 10 years ago, say when I was a child actress. It didn't affect it. Obviously, I had to check in between cakes and things like that, because I was on insulin pens three years ago when I did a new film, I was on the Libra. So they were very, very supportive. And I said, Oh, my Libras on show, is that okay? And they're like, yeah, why not? Why wouldn't she have type one diabetes? And they were, they were amazing in costume, nice, but, but now I'm on the insulin pump. I'm I'm not, I'm not filming anything as of yet in the pipeline, but I'm slightly stressed because I'm like, is that going to interfere with wires and things like that? So I'm hoping it. I mean, there are loads of actors with type one, with insulin pump, so I'm hoping it doesn't, yeah.
Scott Benner 17:17
I mean, I would imagine they could hide it if they wanted to. I would think you'd be more worried about alarms than anything else. Oh, yeah, I turned this off. Yeah. By the way, Kelly's last name is Bascom. It's, I think we both had a little bit of it. It's B, A, S, C, O, N, I'm thinking of Kevin Bacon. It's awesome. If we had time, we could see how many degrees of Kevin Bacon. Kelly is from Kevin Bacon. But her film, it's a feature film. She's the writer and actor in it. It's called quarter amazing. I don't know when it's coming out, but I hope she comes on to talk about it when it does.
Ruby 17:47
Yes, that. I literally can't wait for that. I'm so grateful that they're making it, and they've made it, and it sounds amazing, and they've got type one diabetic actors in it, obviously, Kelly and Brooke Shields, his daughter. Oh, is she in it as well? That's awesome. Yeah, she's a type one
Scott Benner 18:02
there. Yeah, she is, um, who else? Who's the models? There's a model, Kate Moss, her daughter. Yeah, right. There's a lot out there. Even now, when you go online and go clothes shopping and there's models, there's a lot of models wearing diabetes devices. Now, I've
Ruby 18:15
not seen that here yet. No, we have stoma bags and things and things that are represented on telly and modeling shoots, which is so amazing, but I've not seen any type one diabetic representation in our media yet in the UK, except for adverts, advertising Libra, obviously. Yeah,
Scott Benner 18:31
right, right. How about dating with type one? What is that like? I've
Ruby 18:35
got a partner now, but before I just hid it, I'll be honest, it was awful. And I did a video quite recently on Tiktok. Reason number 942, to tell people that you're on a date with that you've got type one. I went on a date, and I didn't tell him, and I was injecting under the table, and he saw it, and he was like, what's that? And I was like, it's a pen. It's a pen. And then my blood went super low, and I didn't tell him, so I was just scoffing a bag of Harry bows after a three course meal. And he was like, Are you hungry still? And I was like,
Scott Benner 19:06
yeah. He's like, I can't afford. I don't think I'm gonna be able to afford this girl.
Ruby 19:12
So I would definitely recommend telling people. When I first got with my partner, he cracked a diabetes joke when I told him, I went, Oh, yeah, I've got type in diabetes. And he said, he said something like, diabetes, you know that American meme, that man. And I was like, it's actually really serious. And I scared him. Then
Scott Benner 19:29
he hung around while you were you pressured him lecturing. He did a Wilford Brimley impression. Is that who that guy is? Yes, yeah, it's awesome that you know of him, but not who he is.
Ruby 19:41
No, I've just seen his face, diabetes,
Scott Benner 19:44
diabetes. It's actually like kind of a southern thing in America. So it's, yeah, I've had a doctor on this year who was just brilliant with his understanding of, like, GLP medications, for example, and I had him on to talk about it. But when he's an older. Gentleman. He's from Texas, and he says diabetes. He just, that's how he says it. I love
Ruby 20:05
that accent so much. It sounds so nice. Makes me want to buy something. I'm like, Are you selling me diabetes?
Scott Benner 20:11
I'll take three, please, and
Ruby 20:15
such a nice accent. So dating with
Scott Benner 20:17
it, you just, can I ask? Can I dig a little deeper there? Yeah, did that cause trouble with you trying to form bonds with people, because you were always hiding something,
Ruby 20:26
not really. I did eventually tell them if we became an item, but never told them on dates and things like that. But I do think is important, especially if you're going out drinking and things like that. If anything bad happens, they need to know,
Scott Benner 20:36
yeah, what's your plan when you drink? How do you handle it? I'm
Ruby 20:40
going out tonight, actually, so I'm glad that this isn't a filmed one, because I have my hair in rollers. So we're going to go out, and I just make sure I eat when I come back. Just check your levels. I'd rather be a little bit higher going to bed, not high. But you know, around 10, which for you is, what's that? 200
Scott Benner 20:59
is liquor easier than beer? Are there easier ways to handle things?
Ruby 21:04
I like wine because wine doesn't have many carbs in but I didn't even think about this until quite recently. But when you have beer, or, you know, like record big, do you have that there? It's like, fruity ciders and things like that, yeah,
Scott Benner 21:17
but I don't What did you call it record lake? I definitely don't know that word, but go ahead, yeah,
Ruby 21:22
yeah. They're really nice, but they're full of sugar. And for years, I used to drink that and be like, Why is my blood high? And that's why, see, obviously, you can drink what you like and eat what you like as long as you dose for it, but it's just easier for me to have a little bit of wine. Yeah.
Scott Benner 21:35
Do you have any other autoimmune issues? No, I wasn't sure if you're gonna say Not yet. No, don't see that judgment. Did they test your like, thyroid levels there yearly and things like that.
Ruby 21:45
No. I mean, I think my mom's got a thy Well, she did have a thyroid issue. I'm not sure, overactive. I think she said
Scott Benner 21:53
no. So your mom might have an autoimmune issue. Maybe see how it works. Ruby, we talk for a while, and then the next thing you know, you're like, my uncle has type one diabetes. I forgot. I
Ruby 22:02
mean, I don't think I have I should probably get tested. I mean, I'm allergic to oysters, and I have a lot of allergies. I
Scott Benner 22:07
think of allergies as your immune system being overactive. You know what I mean? Yeah, I mean, nobody's gonna call an allergy auto immune. But I mean, it's your immune system being overactive and coming after your body. I don't know, sounds like your immune system not doing what it should be doing. No. It's awesome that I asked you earlier if anybody in your extended family had it, and I explained to you that people often will say no and then be I did exactly that, and that you still told me the truth 15 minutes later. I thought that was really nice, because that would have been a perfect time to lie,
Ruby 22:39
by the way. I mean, my mom has anemia. She's anemic as well. I don't know if that's one as well. That an autoimmune? Well,
Scott Benner 22:46
it's not autoimmune, but it runs pretty heavily through this community, right? Yeah, a lot of anemia. Do you have any trouble like digesting food, bread? Yeah. Do you think you have celiac or no, I've been wheat
Ruby 23:01
free for I'm wheat free a lot. Sometimes I'm not, but I'm I'm careful, because I just have trouble digesting it. I don't think I'm allergic
Scott Benner 23:09
interesting. I ask because it's another thing that your pancreas is involved in that sometimes goes kind of caplu. For people with type one is just digestion. So a lot of people find themselves taking, like, a little digestive enzyme with some, like, more difficult foods, and it seems to help them. I feel like we could pick around that I could find out a lot about you that you don't know. Yeah, how did you end up here? Did I reach out to you? Did you reach out to me? I
Ruby 23:32
reached out to you a year ago. I've been waiting every day
Scott Benner 23:36
I got right on it. Ruby, here's the good news, though, and let me be like, incredibly Frank, you have a really nice following on Tiktok, so I'm going to put your episode out really quick. I had
Ruby 23:48
to message you recently because I was like, what is the date we have? Because I cannot remember,
Scott Benner 23:52
yeah, because you were afraid they might cure diabetes before we got to do the podcast. Yeah. And then there's no point. Usually, people are six months out to record, and then six months out to get their episode up. It usually takes a year from the email, but I am putting yourself in a couple of weeks you reached out. Because why forget me for a second in the podcast? Like, when you're interacting with people through social media with type one diabetes, like, what is that like for you? Like, what do you get out of it? What do you think they get out of it. That's
Ruby 24:20
a good question. I think, like, we have very different views. You're so far away from each other in the world. Yeah, we agree on so much, and we relate so much, especially me, with your daughter as well. So we have so many similarities, but also we probably have dissimilarities. Might disagree on some things, but I reached out to you because I thought you were the best diabetic podcast I could find, and I thought you were great You were great.
Scott Benner 24:43
Oh, thank you. You just wanted to come out and say, Hey, I just wanted to join Yeah, that's awesome. No, thank you. I wondered, like, because you talked about, like, having interactions with people online about diabetes, and I get what they get from you. You're a public figure, and Ruby, I might be three times your age, so just. Make this with where I mean it from, please. But like, You're a very attractive girl, right? Like, do you think that people look at you and think, role model? Do you think they think I'd like to, like, look at her, she looks like she's killing it. Like, oh, are you killing it? Like, you
Ruby 25:16
know what I mean? Oh, God. I wanted to make content a year ago, and I thought, well, what am I going to do it on there was over a year ago. I thought, why don't I try diabetes? I never speak about it. So I started doing it, and I just started doing relatable things. And then I grew a following, and I was like, Okay, there's loads of us out there. This is amazing. Mainly, I get a lot from other people. I've never felt less alone in my life with type one diabetes. My Health's the best it's ever been. I reverse diabetic retinopathy because I started to look after my health more, and my eyes awesome. My HPA 1c went to the best it's ever been. I've made so many friends, so many opportunities. This year alone, I went to Madrid and Florence because of diabetes, and I've got so much from it in return. And I think doing something good, like, I'm a very positive person on Tik Tok, and I don't want to talk about the negatives. Obviously, there's so many, you know, diabetes is rubbish. There are so many, you know, ups we can get from it too. Like, you know, you can go on your phone in class, you can eat sweets when you can bring in food to concerts when other people can't. You've got to look at the positives. I just did a video quite recently, and I think type one diabetes are some of the most empathetic, strong people in the world. They go through so much on a daily basis, and I love that we're so supportive in the community. Yeah.
Scott Benner 26:32
So even though you've had type one for 14 years, like this experience of going out online and meeting other people, it's been kind of transformative for you, and by the way, I would say, not dissimilar to what other people find like. I think a lot of people use the podcast for community. I have a private Facebook group that has, I think, like, 57,000 people in it. Now you can see that, well, I can see that community and support is maybe more important even them learning how to manage their insulin better, but that when you're connected to diabetes and other people with type one so frequently, I think the outcome you had where your a 1c got better. I'm sure your time and range got better, and everything else. Oh yeah, yeah, those things come from being aware, you know what I mean, and having the the community keeps you aware in a way that doesn't make you feel like you're just staring at your meter. Does that make sense? Absolutely,
Ruby 27:30
because in my everyday life, there are no diabetes in my day to day life that I see, and no so online. That's why social media is so great in so many ways. Obviously, there are negatives to it, but it's so great if you use it, right? No,
Scott Benner 27:43
I I'm old Ruby. Like, I'm not lying. I'm like, 53 and so somebody said to me recently, like, you're an influencer. And I was like, That's ridiculous, yeah, law the land, you know, letter of the word like you are. And I was like, I don't see it that way. I'm like, I just talk about diabetes with people, and I put their conversations out in the world, and then the person's like, Well, yeah, and then those people write to you and say that they did better, or that they found community, or that they're happier, like you influenced that in their lives. I don't like the word because of the connotation it has when it started for me, but I don't know that it's the same connotation today. And like, it's interesting that, to me, that you were just like, I'm gonna do what, you know, people put content out in the world. I'm gonna do that. But like, what am I gonna do? And then you found a world that I've known about, you know, my daughter's had diabetes for 18 years. I've been writing a blog for 17 years, like, about type one. And you just were like, oh, there's this whole thing out here. I didn't know about, Yeah,
Ruby 28:39
it's awesome. I never, I never searched it on, on tick tock, and I was on tick tock for years, and I loved it, Yeah, isn't that
Scott Benner 28:45
great? And then just all of a sudden you're just like, Oh, I'll look into this and look at, look at all it brought to you. Now, do you think you're bringing that to the people who are are following you? Hopefully, yeah, I think you probably are. I would guess that, from my experience, that that's what happens, is that now suddenly somebody, through you can find that same feeling of community and be more connected to their diabetes and hopefully have better outcomes in the long run as well.
Ruby 29:10
Yeah, yeah, absolutely. And if I hadn't have searched it, I wouldn't have come across, you know, my my online diabetic friends like Ryan, who you interviewed on here. Yeah, you
Scott Benner 29:21
can understand Ryan when he's talking like, like you're laughing, you're sometimes okay, because, like, what's the movie where the guy from The Walking Dead tells the girl he loves her with the cards? Love? Actually, yes, talking to you is just love. Actually, I can follow you, no problem, Ryan. I had both my hands on the desk, and I was staring at a spot on the desk, just listening to every sound so that I could keep up with him. And it might have taken me like, 15 minutes speaking with him before I was like, I hear him now I know.
Ruby 29:52
Yeah, he's got a strong accent in me. Yeah.
Scott Benner 29:53
Well, that's one way to say it. I guess mostly people who come on here from. The UK end up sounding like Adele, and then they take that as like an insult. If you tell them, why is that? I
Ruby 30:06
don't know she's from London, right? I don't know Ruby you lived or don't talk like that, though. No, yeah. Oh,
Scott Benner 30:13
so there's more that. Oh, I see you can do it if you need to. I
Ruby 30:16
gotcha. What do you what do you think I sound like? Do you think I sound like Adele? No, you sound
Scott Benner 30:19
you sound like that little, skinny girl from the pirate movie, Keira
Ruby 30:22
Knightley, yes, I've been told that I'm from Wales, so I'm from I should be really relish like that, but I lost my accent because I went to drama
Scott Benner 30:32
school. Oh my gosh. That was like, is that was awesome? Yeah, it turned into a leprechaun from a bad cartoon all of a sudden.
Ruby 30:40
Oh, I missed my accent. And when I go back, they're all like, oh, you sound English.
Scott Benner 30:43
That's crazy. So where were you born?
Ruby 30:46
Wales. I'm born and bred, and I should be, I should be Welsh, and I have still got the accent, but I've it's been melted a little bit because I've lived in England for so long.
Scott Benner 30:55
I have to tell you, if that's your lineage, I think if you dig around in your background a little more, you're going to find a lot more. Autoimmune stuff. I'm serious, if you don't find at least, like, Crohn's or colitis, I'd be stunned.
Ruby 31:08
I don't think there's anything like that. What's colitis? Like, you know, like your belly
Scott Benner 31:13
gets upset after you eat and stuff like that. Oh, right, yeah. And it comes out not pleasantly. You understand. I can't wait for you to, like, go home for like, Christmas and start asking people like, Hey, does anybody have anything going on? Because people like, look you, you tried to hide it a little bit like people hide things. Yeah, you know, yeah. All right. Okay, listen, what should we actually be talking about instead of this bullshit that I'm like, digging around in your life? What did you want to talk about when you came on? Just everything. Yeah, you're right with this. There's five. You're good. Okay, so you mentioned in your notes a little bit about stigma, like, what have you interacted with daily?
Ruby 31:47
I get comments saying, just reverse it really daily.
Scott Benner 31:54
That's from your mom.
Ruby 31:57
Try some cinnamon, and I'm like, one. How thick Do you think I am? If it was just cinnamon or, you know, eating less sweets, I think I would have just done it. But how? I mean, a hell of a lot easier. So
Scott Benner 32:09
you interact with a lot of people every day who think that you have made a lifestyle choice or aren't doing something that caused you to have diabetes. I
Ruby 32:17
get so many trolls. I get so many amazing, lovely people, and you can have 100 nice comments, but when you get one horrible comment, it sticks with you. And I get so many. I don't know why people are so like, upset when you talk about type one diabetes online, and if you look at the top performing videos on Instagram and Tiktok about type one comments are vile. Top comments are vile. I don't know what on earth going on, if you
Scott Benner 32:40
want. When we're done, I can read you some of the worst reviews I've ever gotten. Yeah, listen, Ruby, between me and you, you can't let them stick to you. It just like, first of all, you shouldn't read them. Yeah, you should do a thing that they call post and ghost, but it's difficult to do. There's different kinds of famous people. There are people who are not really famous, but they have a relationship with the people who follow them, and you have to go back and forth, like, that's part of the agreement, really, you know what I mean. And so you can't do that. But when you read and you're like, oh god, that's horrifying. I mean, I know how you feel. Like my best example is that in I think 2013 I wrote a book, and it went out for professional review, and like, the first seven professional reviews that came back were really good. And because of that, I was, like, rolling. I was like, This is it. I'm a genius. Everyone loves it. Like, you know what I mean? Like, then a bad review came the way I joke about it is, like he didn't just dislike me, he hated people who loved me. He hated letters for existing so that I could turn them into words. Like, you know what I mean? Like, he really didn't like that book, and I have to admit, like, it rolled me up, yeah, like, for a week, I was like, whoa. Why does this person hate me so much? But I've learned to get past that, and so I don't feel that way anymore. And there's still people who listen to the podcast and are like, I'll tell you my top ones, right? Yeah, there's a very small sliver of a group of people who eat a certain way, and they hate my guts, vegans. Well, no, they're like, low carb, like, very low carb pain, right? Yes, by the way, I also have interacted with a ton of people who eat that way, who are lovely, but just like the rest of the world, like, there's a side of that side, and I am the devil to them. I push insulin on people and, you know, I don't care about people's health. And I say things that they're like, you know, you can eat whatever you want. And like, of course, I don't think you could eat whatever you want. I think that, you know, if you want to be healthy, there's healthy ways to eat. But what I also think is that if you're not aware of that, if you're not a person who understands like the nutrition that they're taking in, and you have type one diabetes, you shouldn't get poor nutrition and bad blood sugars like you should at least understand how your insulin works so you can manage your blood sugars that and then hope. Fully. You know, along your life, you'll figure out how to eat in a healthier way. But I don't feel like that's a thing I can make somebody do, yeah, yeah. So those people definitely don't like
Ruby 35:10
me. I did keto for about a month, and my blood was amazing, but I found it very hard to keep up, especially when I was a teenager.
Scott Benner 35:18
Did you get angry with me, like, three
Ruby 35:19
weeks into it. Yeah, that was me. Sorry.
Scott Benner 35:22
He's like, Listen, you idiot. I got one last night. It was horrifying from a from a low car person, but what I did was I blocked them. I was just like, you don't exist anymore, and then they can go hate me somewhere else. That's fine. Were they type
Ruby 35:39
two or type one one, right? Because I, I went to a Daphne course, which is basically diabetic health and and the nurses told me that it's really bad for type ones to be keto. And I always thought it was the opposite. I always thought that it was great for type ones to be keto, because I know an Olympian that is keto, and she's had, like, amazing levels her whole life.
Scott Benner 35:57
Yeah, I don't think that. I think, I guess, low car people would be stunned to hear me say this, but I believe the thing that they throw around in your face online, which is, you know, the fewer carbs you eat, the less insulin you're going to use. The less insulin you use, the lower chance you have of a, you know, having too much insulin on board. Local that's where
Ruby 36:14
the nurses are saying that's really bad for you, because they're saying that that could lead to ketoacidosis. I don't know if this is true. This isn't my words. This is what the nurse said, because you don't get ketones from high blood, you get ketones from the lack of insulin. So
Scott Benner 36:27
I would tell you that's 100% true. If you don't have enough insulin, you're going to get ketones. But I think there can also be confusion between the ketones that come from like starvation, which are not the same as not having insulin, and a lot of people, well, not a lot of people, but many people who are low carb are still utilizing old, like, types of insulin that kind of stay in your system, in the background, and right? And I think again, low carb people who hate me would be stunned to know that I think what they do is cool, and, yeah, that it works for them. Like, I just don't think you should be running around yelling at everyone who doesn't do what you do. That's all, yeah,
Ruby 37:03
especially when there's little kids out there, if they want to have an ice cream, they can have an ice cream. Well,
Scott Benner 37:07
I mean, it's up to them and their parents, that's for sure. Not a guy online who gets to yell at them about it for some reason and call me a bad guy in between, I've had it happen. What I've learned, and I hope you take from this conversation is that I also see all the people who are helped by the thing that I make and I focus on them. That's all, yeah, yeah.
Ruby 37:29
It's a Larry David. He said that he can have like, 100 nice comments and then he will focus on that. Mean, one, it's just because we're not used to it. In real life, people don't, don't go up to you and say, I hate you.
Scott Benner 37:39
Oh, in your life, they don't do that. You're right. Nobody does that. In real life, I'd have a
Ruby 37:45
meltdown. And then daily I get it online. I'm like, Oh, I'm such an easy like, my content is so like, it's just like, memes, me joking around, so I don't know how, like a video of my boyfriend drinking diet coke to prove that it's Diet Coke that, for some reason, got 100 horrible comments. I'm like, What is wrong with that?
Scott Benner 38:03
The people fly in and they're like, if you just would eat one carb a day or drink cinnamon water. Listen,
Ruby 38:08
I can't even have Diet Coke. I can only drink water. What? For 14
Scott Benner 38:12
years you can't have Why can't you have Diet Coke? But they say,
Ruby 38:14
Oh, I don't know, aspartame. I'm sure that it's not great for you, but you know, you only live once. Listen,
Scott Benner 38:19
I do a fair amount of public speaking, and there's no doubt that if you look out into the sea of people, and someone seems like they got a face, like they're sour, you're suddenly I you start performing for that one person. Like you start thinking, like, if I can get that guy to like me, then everything's gonna be okay. Now absolutely, I guess the secret is, is that I pick a couple of people in the audience in different locations, and I only talk i I'm basically in my mind. I'm talking to them. It's a great advice. Yeah, so you just like, you find a smiling person in the center, you find a smiling person on the right, a laughing person on the left, and then you go, okay, happy people. And they think, I'm funny. This is awesome. How does it work when you're acting or doing any kind of work where you're being recorded or you're in real time, and your blood sugar gets funky, like, there, you must keep it a little higher to work. No,
Ruby 39:13
yeah, I would keep going if I was, like, going low, but not, not, not low, low. So if I was four, I'd probably keep it going for another 10 minutes, and then if I was below four, I would treat it. I would just say it's happened on stage before, and I had to get through it, and then I rushed off. And had, I always keep dextro tablets on the side, and, yeah, definitely important to always have something there. But
Scott Benner 39:35
you've never, like, hit a trolley in the middle of Macbeth or something like that. No, no, I think
Ruby 39:40
it has happened on stage, yeah, with Macbeth and I just had to get through the scene, because obviously you feel when I'm hypo I feel drunk. So I was just like, just say the words and get off. Probably not my best performance.
Scott Benner 39:51
My daughter has this like spot. She doesn't get low. Like this, actually almost at all, but very often. But you can get. Her into that place where, if she's falling through the 70s into the 60s, which is, let's see if she's falling through that space, like, let's say she's going under, sorry, I'm doing the thing for you. Let's say she's going under 3.9 right? And she's heading down in that way. If you're like, hey, you know, Hey, your blood sugar is falling, you should do something before it gets out of hand. If it keeps falling, she can get into that place where she's like, like, it the vibe from her is almost like, free and easy. Like, whatever, you know, I mean, like, if I die, I die, it's okay. Like, it almost hits that. Do you is that the drunk feeling, or is that something different? Sometimes,
Ruby 40:36
for me, it's like, when you're tired, when you're really tired, you're just like, oh, hopefully, just fade away and I'll be okay. But, and also, 3.9 you're not dangerously low. So you're like, maybe it'll go up.
Scott Benner 40:47
Oh. And so that thing happens where you think, like, maybe I can not do something about this, yeah,
Ruby 40:52
but I definitely recommend doing something about it. But I think it's part of the burnout, probably for having it so long.
Scott Benner 40:58
I was talking to Erica. Erica is a therapist who has type one, who comes on the show a lot. I was talking to her about a little bit of the frustration I have sometimes when my daughter, like, rides her pump down to, like, the last drop of insulin, and Erica goes, she starts laughing. She goes, I I do that. And I was like, oh, okay, maybe that's just the thing. You know, waste it for Arden. She's just trying to put off the change as long as possible. Like, she doesn't have any trouble doing it once it's done. But she's like, Hey, the thing's working and it still has insulin in it. I'm not changing it yet.
Ruby 41:32
What is she on? Insulin pump wise, Omnipod. Ah,
Scott Benner 41:35
yeah. So she just rides it to the like, end, but she'll do that, like she does the math where she's like, Oh, this will make it till tomorrow morning at 8am and I'm like, just, it's like, midnight, you know? She's like, I'm like, just change it now. Like, you know? She's like, No, it's gonna make it. I'm like, does she make content? You know, she doesn't. I mean, she's got, like, a personal Little Thing She was for a couple of years in school learning how to create clothing at fashion school, and she was making content then, just because she felt like she had to, but she pivoted away from it. And so she hasn't been doing that for a while, but she's got insane style. My daughter
Ruby 42:15
amazing. One day she can work with Lila Moss, Kate Moss in store.
Scott Benner 42:19
I think that would be lovely, except she doesn't appear to love the sewing part of making clothing, so that kind of threw her off a little bit. But she has, I'll send you. I'll send you. Can find her, and she always has, too, by the way, like, like, since she was little, like, she's picked out her own clothing and put things together that you would just never like no one would think to put together. So that makes me wonder, have you been like theatrical your whole life?
Ruby 42:44
Yeah, always. I've never wanted to do anything else. Not good at anything else.
Scott Benner 42:49
You must be good at something else. No, I
Ruby 42:52
can't. If I'm not amazing at something I don't want to do
Scott Benner 42:54
it interesting, because why? Because it's hard, or because it's not fun, because I'm
Ruby 42:59
not the best, and it'll take years. I've been an actor. This sounds ridiculous, but I was on stage when I was
Scott Benner 43:04
two. Ruby, are you type A? Are you all like, I gotta be best. Yeah,
Ruby 43:07
I'm a little bit, I think so maybe I'm type A. Does it
Scott Benner 43:11
come with any anxiety? Oh, yeah, absolutely. Do you know that? I have a theory that a lot of people who have autoimmune issues have anxiety as well.
Ruby 43:23
Yeah, it's always there in the back of your mind. That's why, probably, I
Scott Benner 43:28
think it's got something to do with, like, inflammation, really. I mean, again, I'm a guy making a podcast, so I, like you said earlier, I wouldn't listen to me. I feel like it's, I mean, it's not classified as auto immune. Like, don't get me wrong, right? It's classified as a mental health condition, anxiety and everything else. But a lot of people would type one, come on and talk about anxiety.
Ruby 43:50
I had it so bad yesterday in London, Oxford Street, and it was just so busy, and I just wanted to go into a corner and just scream
Scott Benner 43:57
so you're out on the street and it just hits you. Tell me about it. Yeah,
Ruby 44:01
it was just because it was so busy. I don't know if you've seen the videos online, but people are stealing phones constantly, and I was lost, and I needed to get to Soho, so I needed to go on my phone. I was scared, because if somebody stole my phone, I would be, oh, can I say the F word?
Scott Benner 44:15
Yeah, go ahead. Please paint in that lovely effort.
Ruby 44:17
I would be because imagine someone nicking my phone on the street, and I no way to get home and no way to pay for anything because I don't have a debit card, physical debit card, because we're living in a digital age, and my insulin pump and my you know, it needs to be connected to my phone.
Scott Benner 44:35
Yeah, it's not just your, it's your. Your life is literally that phone, literally
Ruby 44:38
on my phone, right? So I just had like, an anxiety attack in the corner. It was so busy. I've definitely got ADHD, but I think I might have some other traits as well. I need to get diagnosed.
Scott Benner 44:48
I believe you and my daughter would get along very well. So you're out and about. You need to get somewhere. You don't know where it's at. You think, Well, I can figure it out with my phone, but people are stealing phones. I can't. And take my phone out, because my phone is how I take care of my diet, my life, and I can't pay for anything. And what if I get like, what if I get low, and I don't have my phone and I don't even know if I'm low, and I don't have a way to pay for it, and that just like, snowballs, yeah,
Ruby 45:11
absolutely. And it was just so busy, and I just everywhere you were walking, you were bumping into someone. It was like, awful Oxford Street at Christmas. Don't do it.
Scott Benner 45:19
How do you get through it? What anxiety? Yeah, well, that moment yesterday, what did you do to like, did it just pass? Did you bump into Soho by mistake? Like, what happened? It
Ruby 45:28
didn't pass. I just needed to get out of there. And when it was a quieter Street, it was much better.
Scott Benner 45:32
So literally, getting off of that street helped you. Yeah? Yeah.
Ruby 45:35
I was overstimulated completely. I knew I was meeting with a friend. As soon as I was with a friend, I was okay. I was still a little bit hyper aware, but since I met my friend, I felt like the load had, like, lessened a bit, and if my phone got stolen, then he'd help me with other things.
Scott Benner 45:48
Oh, no, kidding. Like, that's the Oh, and this has been your whole life, yeah, but
Ruby 45:53
I do feel like it's gotten worse since COVID. Okay. Like, like, maybe we all got adapted to staying in all the time, and then I started going out, and I was freaking out. I couldn't even go to Tesco. Wait, what is that like Walmart? Okay,
Scott Benner 46:05
let's dig into that for a second, because I've been really interested in this lately, because over here, the social media news is that there are drones flying in the sky, and there are theories all over the place about Russian nuclear like waste, like uh, dirty bombs, and there's warheads and, like, people like, and it's social media, like, it just is, you know, people take videos so worried about your tick tock, but, yeah, but that's what I'm saying. Like, social media, like, tick tock, Instagram. Like, both of my children have come up to me in the last week and said, Hey, are we gonna blow up? And I'm like, maybe you guys, like, should get rid of it, is what I'm saying. Because I haven't once thought this week, I wonder if I'm gonna blow up. Like, don't get me wrong. Like, I think there are things happening in the world that I'm unaware of, right? I'm not saying. I'm not, I'm not like, a head in the sand person. Like, I understand that. Like, governments lie and, you know, there's things happening that I don't know. I also think that everybody online who's trying to get clicks and likes because it generates money for them, or hopefully a brand will come to them and pay them to say something, and they're trying to build their channels up. They see stuff like this out in the world, and then they'll do almost anything to amplify their signal and use this as an example. But I've noticed that younger people don't know how to like, I don't know like, separate those ideas. Like, yes, there's something going on in the world, but that guy right there is just showing me a fuzzy picture of Christmas lights and saying it's a drone. You know what I mean? I see what you
Ruby 47:32
mean. Because, you know, people, some people do believe everything they see online. But at the same time, I think Tik Tok is amazing, and I think that they give you resources and videos and news that you don't necessarily get on your own news outlet, which is why American of Americans are banning tick tock, right? Well,
Scott Benner 47:47
it came up again. It's never going to happen. It's scary. I don't talk about a lot of political stuff, but if they're going to ban tick tock, the reasons that they're looking at tick tock, those reasons exist with Facebook and Instagram and every other thing else. So I know what they're trying to say. They're trying to say because it's a Chinese owned company and like, that's the road they're going down politically. I mean, Tik Tok is not doing anything with your I'm going to stop myself, because I'm not sure that that's true. Facebook is doing the same things that Tik Tok is doing with your
Ruby 48:18
data. I'm not that interested in though. What happens. Well,
Scott Benner 48:21
people say that all the time. You're not interested. But, like, that's not, I don't think that's how they I don't know
Ruby 48:26
what they get all my information on. Like, what information do you want? Selfies? They don't care about me. Ruby's
Scott Benner 48:33
like, as long as I could see my blood sugar, I honestly don't care about anything else. Yeah,
Ruby 48:38
with, with tick tock as well. You can't post, misinformation. So I posted a video once talking about a cure for diabetes. Somebody said, why didn't you just cure it? Stupid? And I did a video back, going, oh my god, I had no idea. Wow,
Scott Benner 48:51
sarcastic. Yeah, the sarcasm didn't play through.
Ruby 48:55
The sarcasm didn't play through, and it got taken down from misinformation. Yeah, I
Scott Benner 49:00
actually just had one of these conversations in my Facebook group, because inevitably, laboratories who are doing research, they need funding, so they put out news of the things that are going right for them, and then somebody says, Oh my God, look, there's a Chinese like, literally, this one was, there's a lady in China, and she doesn't have type one anymore, and they, they cured her with stem cells or something like that. And so that story gets around, and then everyone starts talking about it, which is great. I'm glad people talk about stuff, but then eventually you're gonna get 54321, there's already a cure. We don't have it. They're hiding it from us. There's more money in keeping us sick than there isn't helping us? Like, like, that whole thing starts and, I mean, on that point, yes, there's greed in the world, but that same greed will lead somebody to say, Hey, I've got the cure for something here. I'm gonna go make a bunch of money off of it. Like, I think people are confusing the idea with the cure being readily available and free in America. Yeah, trust me, if a greedy person has the cure for type one diabetes and wants to go charge like, $5 million for it somewhere, there's got to be five or six billionaires who have type one in their family. You know what? I mean, they're going to sell it somehow, like, it's not necessarily going to be like, you know, a thing at Walmart that you buy off the shelf and, like, inject on your way out the door and you don't have diabetes anymore. And I just think that people get so caught up in that, like, the worry that they're being screwed. I don't believe in humanity enough to believe that they have a cure for something yet, like my example online was that people can't make a left turn without confusion. They can't walk through a supermarket without bumping into somebody like, I don't think they cured diabetes, and I definitely think that if there was a cure, that people couldn't keep their mouth shut. You know what I mean? Like, it's somebody would open up them. Don't you think somebody would blow the whistle on that? If that, if that existed,
Ruby 50:54
I don't know. I don't know a lot to think about it is Ruby. I don't have the resources or the information well and
Scott Benner 51:01
I and listen, I don't either. Neither do the people online. So my point to them was, I would stop torturing yourself believing that this thing is exists and it's being kept from you live your life like, you know what I mean? Like, I don't know Anyway, I think social media makes people paranoid sometimes, yeah, yeah, that's all, but you don't think you're younger. Like, it definitely like you said something a second ago that, if I would have said, when I was 27 my dad would have, like, gasped and fell over, what are you going to do with my data? My father would have talked to you about personal privacy and for an hour and how important your privacy is. And like, you know, but you're just like, Yeah, whatever. Who cares? Because I'm
Ruby 51:43
not important. Like, nobody wants to. What if I got a picture of me sitting on the toilet by accident?
Scott Benner 51:49
Would there be a snake in the toilet by any chance?
Ruby 51:54
No. But like, I don't have any thing, like, interesting, or any anything, anyone can blackmail me. Not yet. I don't even have that much money.
Scott Benner 52:03
Ruby. I just want you to know that I believe that at some point around your sister's wedding, you are going to reach down to open a toilet seat. Pause and think, Scott, put this in my head, that there's
Ruby 52:19
a toilet in here, toilet seats there. We'll be going in the Bucha. You're
Scott Benner 52:22
just gonna be like, you son of a bitch. Why did you put this in my head?
Ruby 52:30
No, my Instagram companies have fallen out.
Scott Benner 52:33
How are you gonna handle, like, How long's the flight to Australia? Don't
Ruby 52:36
know. I've never been I think it's like, 24 hours or something. I think it might be longer
Scott Benner 52:41
than that. How do you do flying? How does your blood sugar act? I'm okay.
Ruby 52:44
I've not done a flight that long with a pump. Yeah, nervous. I have to make sure I over pack, just in case. Always over pack, because you'd rather have more than less if you go away. Oh, I'm nervous, but we get an extra bag on board, right?
Scott Benner 52:58
Yeah. No, you just have to bring enough insulin and supplies in case something goes wrong. But there's other stuff to look into. Like, sometimes with the air pressure, right? It can, like, force a little insulin through the tubing. So you sometimes people get low because they get a little extra insulin. I did go low, yeah, when I went to Madrid. Also, people tend to get low at the baggage claim afterwards, like and it's got something to do with the air pressure. I honestly, I think I have an episode on it, but I'm just not remembering it
Ruby 53:27
right now. Interesting. And obviously you're running around at the airport and you're stressed and things like that, that'll
Scott Benner 53:32
affect you too. Yeah, some people find themselves a little more resistant in the air. And then the idea is they Bolus, Bolus, Bolus, and then they land. The pressure changes. The sometimes people are stressed by flying, and they don't realize that that changes. Then they start running around the airport with all that extra insulin
Ruby 53:49
on board. We can't get away with anything diabetics. That sucks, right?
Scott Benner 53:53
Like it really does. How often do you think you think about your diabetes
Ruby 53:56
with an insulin pump? So much less. And I'm so grateful for it. I only went on it this year. Before that, I used to think about it all the time, but now it's so much less.
Scott Benner 54:06
What do you attribute your improvement in a 1c to? What did you do differently just
Ruby 54:11
thinking about it more, and I learned about the complications, which scared me, and we've all been triggered and scared about the complications with eye health and things like that. And you get people saying, oh, you know, my my grandma lost her foot from diabetes and things like that. The scare the life at you when you're a child, you don't want to hear things like that. So, yeah, I just started really taking care of myself. And it doesn't matter about your past. You can't change the past. You can only change the now and the moving forward. Yeah,
Scott Benner 54:36
I agree. I tell people that all the time, like, you know now, like, don't spend any time beating yourself up about before, but yeah, why do you think you didn't know what educated you recently, and why was that not information that you had when you were younger? I knew
Ruby 54:52
about the complications, but I kind of forced out my mind. I was like, Oh, what happened to me, even though I didn't look after myself when I was young? Well, I did, in a way, but I you. I heard that some people just took their insulin pumps out and didn't, didn't inject at all, but I did to some extent, but I nowhere near as healthy as I am. Now,
Scott Benner 55:09
your mom not involved when you were younger, or dad, she
Ruby 55:11
was, she was very helpful. There were just things I didn't know, like I used to inject after I ate, and I only started bolusing before I eat. Now, wow, don't think about, where did you learn about Pre Bolus? That was Ryan Taylor, really, yeah, like
Scott Benner 55:24
knowing him personally or watching his videos,
Ruby 55:26
both, I think knowing him personally. The first time I met him, he told me that, yeah, it's awesome. I
Scott Benner 55:31
have to tell you that, of all the things that people give me credit for that stun me, it's telling them to Pre Bolus their meals. Yeah, I don't know why. I wasn't told that. No one ever explained to you, like the action of the insulin and the timeline that it works on, or anything like that, for years, it's
Ruby 55:47
mad, crazy. I mean, we're learning new things all the time. Maybe when I was diagnosed, it wasn't as talked about. Maybe they get told it now, I'm not sure. Oh, 14
Scott Benner 55:54
years ago, they knew Arden's had diabetes since she was two, and she's 20, so she said diabetes for 18. Yeah. I mean, that's not a new idea. It's just the thing that people, just like doctors, don't talk about it, yeah. By the way, I've had a lot of people go through that Daphne program and tell me that it was really valuable for them. It was really valuable. Yeah, yeah. But nobody mentioned that there.
Ruby 56:18
No, I asked, I asked that question there, and they did tell me, yeah. Oh, okay, yeah, quite recently. Oh, I'm sorry to the pump, yeah. Oh, Ruby,
Scott Benner 56:26
I'm sorry the Daphne course you took very recently, yeah, because I had to do it before the insulin pump. Oh, I see that's what pump did you get? Medtronic, the seven ADG, yes. And you're in automation. How do you like it. I love it. It's so good. That's awesome. That really is awesome. I hear, Oh, and you're in Europe. Are you using their new CGM, the little round one,
Ruby 56:49
you know, I just switched two days ago. Did you really? Yeah, it's so much easier, because the other one was great, but I just struggled to put it on because I felt like I needed my partner to help me. But with this, it's, you know, kind of similar to the Libra in a way, because you just one step,
Scott Benner 57:05
yeah. How are you finding the accuracy? It's perfect. The first time I
Ruby 57:09
put it on, I was a little bit up and down, because every time I changed my sensor, and I have to wait in that two hour warm up period. I don't know what I am, and I usually go high. So I was a little bit high to begin with, and it was getting used to it all over again. But now I'm absolutely fine, and it looks great too. It's so small. It
Scott Benner 57:24
is tiny. It's in your picture of you that I'm looking at now, yes, or is that a libre? That's a Libra, that's from a few years ago. Oh, that's from a few years ago. Okay, yeah, no, I can't believe you just switched. That's awesome. They're, uh, sponsors of the podcast, so, oh, amazing. Yeah. Medtronic Scott, that system has been overseas for me for a while now. I've been hearing people telling me overseas about how great it is. It just isn't. Didn't catch on here as quickly, and so trying to get the word out about it for people as well. Yeah, yeah, that's awesome. Are you a citizen or, like, how do you pay for your supplies?
Ruby 57:57
So we have the NHS, so I get it all through the NHS, luckily, crazy, and it's free, yeah? But, well, when we get paid for work, money comes out of your taxes for things like that. So I get, in a way, it's free. I don't know if I've explained that. Well, if British people are watching out, yeah? So in a way, it's free. You can't it kind of comes out of your paycheck,
Scott Benner 58:15
if that makes sense, yeah? Oh, listen, Ruby, I pay taxes, and then my healthcare is not free after that. So, yeah, that's okay. It's
Ruby 58:23
so unfair that you have to pay to do you think so have a medical condition? I do you don't choose diabetes? Do you? No,
Scott Benner 58:28
but this is an, I think this is an interesting question. I might not I'm gonna play devil's advocate for a second. What should I pay for? Like, what shouldn't be free?
Ruby 58:38
Like, luxuries? No, I think a set like living should be free food I should pay for No, no, because that's, that's food that's been you've had to pay for that for 1000s of years, okay? But diabetes, you know, you would have been dead in a few years. Unfortunately, that's an opinion.
Scott Benner 58:54
So if I have a heart issue, of my heart medication should be free.
Ruby 58:57
Yeah, absolutely. That's my opinion. I might want to live in your place better. Why should you have to pay for it? Because if somebody else has a healthy heart, yeah, I mean, I hear you, but yeah, all
Scott Benner 59:07
right, I'm not arguing with you. I'm just saying. I'm just trying to get your world view so cool. So like, if I take, let's really dig into this. I get a hang nail, and I buy a pale and narrow clippers to clip my nails. Should that be free?
Ruby 59:18
No, because if you, if you don't do it, you're not going to die.
Scott Benner 59:23
Okay, so if I'm going to die and I need to be medicated or get a device, that should be free,
Ruby 59:28
do you think that you should have to pay because diabetes is a disability as of the Equality Act 2010 in the UK, rather than so it's a disability. So do you think you should pay to be disabled? Let me spin that question on you. Scott,
Scott Benner 59:39
no, I'm going to answer you. I'm trying to, I'm trying to decide who pays for all this, if everything's free.
Ruby 59:45
I think the NHS is a great idea, and it's there are ups and downs, but I think it's great at the moment. But you know, you kind of pay your way, and then if you need to go to hospital, things like, you never know what's going to happen,
Scott Benner 59:58
right? So these things are paid. For through taxes? Yeah, what would happen again? Just devil's advocate. All you with diabetes, don't get mad at me for a second. My kid has the two I would like free insulin. Relax. What would happen if the tax burden went up to, I don't know, 80% so every dollar I make, I lose 80 cents of it. But everything's free. But it's not because food still costs money and housing and those sorts of things like and then wouldn't a person who doesn't have diabetes or doesn't have a heart issue, I know they don't understand, like those people generally aren't gonna understand until they're sick, that the impact of it, but don't you think they're gonna raise a red flag and say, Why do I have to pay for your diabetes? No,
Ruby 1:00:39
because they're not paying for your diabetes, they're paying for their health care too. So for example, if my boyfriend breaks his leg and needs to go to the hospital, needs to get a cast, and
Scott Benner 1:00:47
he'll get it for free too, yeah? But you don't break your
Ruby 1:00:49
leg every week, yeah? But you never know. Everybody goes to the hospital at one point in their life when you die.
Scott Benner 1:00:54
I'm saying I like your vision. I don't think it's as easy as it sounds.
Ruby 1:00:59
I mean, for me, I'm like, It's not about us at the end of the day, it's not about me. It's about if you, let's put it into the shoes of little kids, right? Yeah, two little girls, AJ, one's got diabetes. One doesn't. So how much in America are you paying for diabetes every month? It depends
Scott Benner 1:01:16
on your insurance. A lot of it depends on how much your insurance covers. So I can. I'll explain back to you that I raised a family with two children, so four people in a family, and currently I'm still insuring all of them for health insurance. They're still young enough to stay on my insurance. I believe that I pay between seven and $8,000 a year just to have the insurance. Then there are deductibles that I have to pay out before the insurance starts to cover at 80% my rough guess is, is that it costs me, if nobody has anything tragic happen, it costs me and my wife about 10, $11,000 a year to have health insurance and to cover everybody. So
Ruby 1:02:02
I can't speak for I'm I don't know enough about it, American health insurance. I can't speak about it, but I do think here we've got it pretty good.
Scott Benner 1:02:10
Yeah, no, I also, and in fairness, and I don't know, like, I'm sure you can make an argument for scaling, but your country is like, the size of, like, one of our smaller states, isn't it, like, how rails? Is tiny. Is it really teeny? Tiny? Yeah,
Ruby 1:02:22
I can't think of a state that's the same size as it. I'm sure there's one. What's the smallest state? I'm gonna
Scott Benner 1:02:26
find out how many people live in Wales, and I know it doesn't have an h in it, like that. Probably a million. Okay, estimated population of whales in 2023 was 3,164,000 Wow. A lot of people. What US state is it sized like. Sized like is not English, but it's gonna work. It's gonna work. Chat. GPT, actually, chat. GPT was like, hey, use more English. No, hold on. Said, Oh, Wales is about the size of New Jersey, the state I live
Ruby 1:02:58
in. Oh, wow. And that's quite small. No, 22
Scott Benner 1:03:01
and a half 1000 square kilometers, 8700 miles.
Ruby 1:03:06
I could hear the New Jersey. Then when you
Scott Benner 1:03:09
said, Here, I'm actually from Philly originally, but it's all mixed up now. All right, so you get your stuff and you're managing well. You just made a switch because you're learning more about taking better care of yourself. Do you feel differently today than you did before you made these switches in your care?
Ruby 1:03:27
Oh, yeah, I feel so much happier with myself, and I'm proud of myself, and I'm proud to be a T 1d now, whereas before, I didn't even think about it. And do
Scott Benner 1:03:36
you think that not thinking about it was partially defensive because you knew you weren't doing what you're supposed to be doing. Yeah,
Ruby 1:03:41
yeah, it's a shame to be different. And like now, as you said, in the world, we're all about diversity, and it's great to be different and to show off representation, but at the time, I guess we weren't as inclusive back
Scott Benner 1:03:56
then, or you just weren't ready to be seen, maybe, but
Ruby 1:03:59
also the media as well. Like, you never saw it talked about,
Scott Benner 1:04:02
and that really does impact you, right? Like, the things that, yeah, no, I think that's generational, by the way, too, because I don't need, I don't need to be represented somewhere. That's not a thing that I care about. Like, but I just grew up in a completely different
Ruby 1:04:15
time. Yeah, you're represented enough, Scott, don't we?
Scott Benner 1:04:19
I think white guys in their 50s are being well represented. No comment. Well, now what you've caught me there. Look at that. That was, that was good. So you're saying I was being represented the whole time. I just didn't know it. Yeah, yeah, that's fair. My favorite thing has happened this week, making the podcast. That was great. I just meant like me, like my little personal like my personal idiosyncrasies, like the thing,
Ruby 1:04:44
it's not about, like, representation. I don't want, you know, to scream from the rooftops, but it makes a child's life, for example, in inside out. You know that Disney, Disney film? Sure, I've seen it. Yeah, yeah. Like having a CGM in the background of a character, one that's more inventive and more imaginative for creators to create. Eight and two. If there's a little diabetic kid watching it in the audience, that's going to change their whole bloody life. Yeah, no, I hear you. What difference does it make sticking a sticker on a little character in the background of the film?
Scott Benner 1:05:12
Well, what is going to happen then, if everybody needs to be represented in inside out, next time, it's just going to be like every character has a thing. I'm
Ruby 1:05:20
going to be more interesting. Not, not that a thing, but like, I don't know. I've not, I'll be honest, I've not seen inside
Scott Benner 1:05:29
out. It wasn't inside out that you're thinking of. I think it was, No,
Ruby 1:05:32
it was, it was inside out too. But there's another one called turning red, which I have seen, yes,
Scott Benner 1:05:37
with the with the red panda, yeah, yes. And the kids wearing a CGM in that, right?
Ruby 1:05:42
Yeah. And it's only, like, in the background for like, two seconds. But I think it's great idea. No,
Scott Benner 1:05:46
it's lovely. It really is. Have we not talked about anything that you wanted to talk about? I want to make sure I don't
Ruby 1:05:52
miss anything for you. No, it's been fun. I think I've spoken about everything. Yeah. Did you actually have
Scott Benner 1:05:55
a good time? Are you just like, I'm getting through this? Because, no, I did. It was interesting,
Ruby 1:05:58
because I didn't know what was going to come. I was like, Oh, what are we going to talk about? So it's nice and natural
Scott Benner 1:06:03
conversation. Which was nice. Oh, awesome. Did you feel anxious when we started? Maybe
Ruby 1:06:07
when I spoke about myself and I messed up how many years I've had diabetes? I've had
Scott Benner 1:06:11
diabetes for four years. You were like, wait, no, that's not right. Yeah, you're not the first person to do that, Ruby. Don't worry. I just have a question about doing voiceover work. So like, you have an agent, I imagine, yeah, is it recorded? Or is this for your own personal gain? No, no, this is recorded. I think people would find this interesting. Here's what I think people would find interesting. You're a 27 year old, living, breathing person who acts and does voice over work, and I'm assuming you're paying for yourself to stay alive. Is that right? What do you mean? I mean, like, you can afford your bills. Oh, right, yeah, yeah. Like, so you're making a living doing this. I just think it's interesting and not a way that most people know about making a living. So, like, do you go into a studio to do this? Is it done in your home? How do you do it?
Ruby 1:06:53
A bit, both at the moment, doing a lot of stuff from home, but yeah, you just audition for things, and then it comes through, and then you get it hopefully.
Scott Benner 1:06:59
What do you give them? Like, a ton of different reads, and they choose
Ruby 1:07:02
with auditions. I usually just send to no
Scott Benner 1:07:05
kidding and then, and so you cut something, send it back to them, and do they give you notes and ask you to recut it? Or, like, unless,
Ruby 1:07:12
unless they want you, and they want you to try a different part, or something like that, most of the time you don't even get a rejection. It's harsh right now,
Scott Benner 1:07:18
oh, you just apply and you'd never even hear back sometimes. Yeah, that's how looking for work here is, by the way, too. Yeah, yeah. My son spent nine months looking for a job and, and he's like, by the time, and he's got one now, and it's, you know, going really well and everything. But like, he's like, that, I don't know. I might have applied for 500 jobs online and, and he's like, and you do not hear back from 98% of them at all. Yeah, and then, yeah, that's crazy. Do you live with this person who you're partnered with now? Yes, yeah. Was there any adjustment there with diabetes stuff? Or had you been together long enough that it all just kind of blended together nicely? Yeah,
Ruby 1:07:57
pleasure to get nicely. As long as I've got my shelf on the fridge wicked and my cupboards. He doesn't need much, but we do fight over wardrobe space. You fight
Scott Benner 1:08:04
over water. No, wardrobe space. Oh, wardrobes. Oh, yeah. Is he a handsome boy? Yeah,
Ruby 1:08:13
he's an Italian Stallion.
Scott Benner 1:08:17
Ruby, I might call your episode Italian Stallion. Why
Ruby 1:08:21
is everything I do about him, you'll love that. Like, yes,
Scott Benner 1:08:26
I was also thinking of calling it, where is Soho? Oh, this is interesting. Like, my wife does not have this problem. I barely take up any space for my clothing in the house at all. Well, wow, I guess it's nice. Is it weird? Do other girls look at him? Is that strange? I think I'd be offended if
Ruby 1:08:46
they didn't. I don't know. I didn't really notice. We got stared a lot in Disney this year, you know. And I got recognized for the first time ever in Disney, which was amazing, no kidding, yeah, by a little diabetic girl, and she was lovely with her dad. But we got stared a lot in Disney, and I think that's because we had, I don't know,
Scott Benner 1:09:03
wait, you were walking around Disney and a little girl knew you from tick tock. Yeah, that's insane, isn't
Ruby 1:09:09
it? I knew, and we were chatting over how we could skip all the cues. It was amazing. Yeah,
Scott Benner 1:09:14
do you know I've been recognized in public by my voice? Really? It's insane. Yeah, that is cool. I make a diabetes podcast, and people will turn like, it's happened so many times, I've lost count, but they'll turn like, shocked, oh my god. And I'm like, Hey, what's up? And they're like, you're the guy from the podcast. And I'm like, I am like, that's insane. That's happened a number of times. I once was in an airport, I was I had my headphones on, and I was listening to music. I couldn't hear another thing in the world, but across the seats. And I mean, like, I know I'm gonna say yards, and you're not gonna how long that is, but like, 50 yards away from me, this woman stands up, and she catches my eye somehow, and she's making like she's walking in a pattern, and it feels like she's walking right at me, but that's. So insane to think in a room full of that many people that large, and then she ends up right in front of me, and I like, take my earphones out, and I'm like, hey. And she goes, You're Scott from the Juicebox Podcast. That's amazing. And I thought, How do you know that you didn't hear me talk? She's just like, I recognize you from your website. I was like, Oh my God, you go on my website. Like, the whole thing just seems strange to me, but I liked it in your I mean, I'm sure it was shocking, but, like, I was genuinely like, I don't know, knocked over by it. Did you feel that way?
Ruby 1:10:30
Yeah, I did. I felt fuzzy and warm inside. Did
Scott Benner 1:10:35
it give you the feeling of like, hey, my my channel is working? Or did it give you the feeling like, wow, people are really out there and connecting. It
Ruby 1:10:41
was it was nice, because a few weeks before somebody else commented on my Tiktok videos, and I think I saw you today, were you in Warwick Castle? And I was like, Yeah, that was me. So I was like, Maybe I should I was getting a bit scared, to be honest. I was like, Oh no. How am I gonna go to the supermarket?
Scott Benner 1:10:54
Does that freak you out? No, no. I was at a gas station one time and a person walked up to me and was like, hi, and I'm like, hi, she goes Scott, right? And I was like, Uh oh, but she ended up being lovely, and she's been on the show, and she shared an amazing story since then. But like, there is a moment where you're like, Oh my gosh. Like, I guess I can't pick my nose anymore.
Ruby 1:11:22
Don't get too big headed.
Scott Benner 1:11:24
Well, if the people that hate me see me, they're gonna have a field day if I have my finger in my nose, you know what I mean? All right, Ruby, you're awesome. I this is my fault. We're doing this on a Saturday because I had a technical problem the other day when we tried to do this. I really appreciate you being flexible like this. It's
Ruby 1:11:40
been amazing. Thanks. So hopefully I'll meet you one day, if there's an event on,
Scott Benner 1:11:44
Oh, that'd be awesome. Yeah, I think I'm I think I might be going to, Oh, should I float this? Yeah, why not? I think I might be going to friends for life this year in Orlando, this summer. How do I get invited for how do you get invited? Just be, only be yourself and get invited. You can do it. Okay, listen, you wear the Medtronic 670 G, yeah, Medtronic, fly this girl to friends for life and let her stand at your booth.
Ruby 1:12:10
Orlando. I love it. Disney, yeah.
Scott Benner 1:12:14
All right, we'll go on a roller coaster. If this works out,
Ruby 1:12:16
let's do it. Awesome. Total crush. Hold on one second.
Scott Benner 1:12:26
The episode you just enjoyed was sponsored by the twist A I D system powered by tide pool. If you want a commercially available insulin pump with twist loop that offers unmatched personalization and precision for peace of mind you want twist twist.com/juice, box. The conversation you just enjoyed was brought to you by us. Med, us. Med.com/juice, box, or call 888-721-1514, get started today and get your supplies from us. Med, having an easy to use, an accurate blood glucose meter is just one click away. Contour next.com/juice box. That's right. Today's episode is sponsored by the contour next gen blood glucose meter. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts. Please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? The Diabetes variables series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about travel and exercise to hydration and even trampolines. Juicebox podcast.com go up in the menu and click on diabetes variables, the episode you just heard was professionally edited by wrong way. Recording, wrong way, recording.com, do.
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