#974 Diabetes Magnet

Rebecca is the wife of a type 1, mom of a type 1, mom of a Trialnet participant trying to prevent type 1, and a sister of a steroid-induced type 1.

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

Scott Benner 0:00
Hello friends, and welcome to episode 974 of the Juicebox Podcast.

On today's episode I'll be speaking with Rebecca. Now in Rebecca's words, I am the wife of a type one mom of a type one mom of a trial net participant trying to prevent type one, and a sister of a steroid induced type one. That sounds like an episode to me, kids. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. You want to save 40% off your entire purchase of sheets and towels and clothing. At cozy earth.com you can by using the offer code juice box at checkout. You can get a free year supply of vitamin D and five free travel packs with your first order at drink ag one.com forward slash juice box and of course support the sponsors Dexcom. What else je Vogue hypo pan you know there are links are in the show notes all of the great sponsors that have been with the show forever. click on those links in the show notes if you're going to make a purchase. And don't forget to find the private Facebook group Juicebox Podcast type one diabetes on Facebook type one type two doesn't matter to me. This episode of The Juicebox Podcast is sponsored by Dexcom Dexcom, of course, makes the Dexcom G seven and G six continuous glucose monitoring systems dexcom.com forward slash juice box my daughter is wearing the Dexcom g7 and we love it. Go check it out@dexcom.com forward slash Juicebox Podcast is also sponsored today by us med us med.com forward slash juicebox. That's to get started. Or you could call 888721151 for get your free benefits check today. And you'll be on your way getting your diabetes supplies the same way we do from us med us med.com forward slash juicebox

Rebecca 2:20
Hi, I'm Rebecca. I'm from New Hampshire and I live with two type one diabetics. My husband Matt was diagnosed back in 1975. My daughter is nine who just diagnosed last year and then my son Jack who's 12. He has five antibodies and is currently in trial net. And then the wildcard is my my little sister is 30 and she was just diagnosed with type one in January this year. So like 10 months ago. Alright, so I have all these diabetics in my family.

Scott Benner 2:55
I missed one Matt, diagnosed in 75. He's your husband and there's another. There's a daughter,

Rebecca 3:01
daughter, Kate, who's nine and she was diagnosed last June.

Unknown Speaker 3:06
Okay, a little over and then

Scott Benner 3:09
Jack is 12. He's in trial now because he's got he's got all the markers. Markers. He's getting diabetes for Christmas. Probably. Yeah, no, no, no, no. What do you think?

Rebecca 3:19
I hope? I don't know.

Scott Benner 3:22
Valentine's Day. What do you think your sister's 30 type one? And you're here to say that no one should live in New Hampshire. Is that correct?

Rebecca 3:31
Well, my sister lives in Maine. So no one should live in New England. I don't know. Or no one should hang out with me. Because I feel like in the last 18 months, it's just been like, don't talk to me because you're gonna get diabetes.

Scott Benner 3:41
Interesting idea, Rebecca, you're the problem. Is that right? Yeah.

Rebecca 3:45
I feel well, I when I emailed you, I said I feel like a diabetes magnet. Because in the last 18 months, it's just been a whirlwind. And all I talk about is diabetes. So it's like, why don't I go talk today about diabetes with Scott because that's what he does for a living.

Scott Benner 3:58
Apparently, that's what you do with all of your time as well.

Rebecca 4:00
I do I have a full time job. But I feel like my part time gig is you know, diabetes support.

Scott Benner 4:05
What do you do full time? Maple syrup?

Rebecca 4:09
No, I'm a data analyst. Oh, federal government. So

Scott Benner 4:13
how do you like that?

Rebecca 4:14
I like it. I work from home. That's great.

Scott Benner 4:17
Can you get my son a job please? He's sending out so many applications. No offense. I'm not going to interview you unless you get my kid No, My son just graduated with quantitative econ degree.

Rebecca 4:31
Yeah, so as well as picking around Federal Government tiring. So have them look at look for jobs.

Scott Benner 4:36
I certainly wouldn't government actually someone else who's listened to the podcast sent me a suggestion of the same thing. Said they. They said I work for part of the government. I'm not comfortable saying online, but we're hiring and I was like, oh, what part of the government is that thing? Yeah.

Rebecca 4:54
Yeah, typically, we don't say that. I'm not I won't say it either. But yeah, having Google Oh, All right, great medical benefits, you know, so if he if he ever gets diabetes, don't be good to go,

Scott Benner 5:05
Rebecca. I'm keeping them away from you. That's for sure. No kidding. Oh, all right. All right. Let's figure this out. You. See, here's the interesting thing. Your husband is not related to your sister.

Rebecca 5:18
That is, that's why she's the wildcard or again,

Scott Benner 5:21
maybe why you are. You're like the house nobody moves into because the electrical lines. Oh, my God. Do you feel? Do you ever feel guilty for not having diabetes?

Rebecca 5:36
Um, yeah, I actually did try on that for myself, because I'm 44. And you have to be under 45 and have all these relatives. And I'm like, Well, I have all these relatives. So why don't I you know, poke my finger and do trail net? Of course, I have nothing. I have no antibodies. I'm healthy. I have no thyroid issues. I, you know, I'm perfectly I have nothing.

Scott Benner 5:55
But though, but my question is, do you ever feel bad about it?

Rebecca 5:59
I do feel bad about I would take everyone's diabetes from from them. Just to make their life easier. That's I feel like that's what I do instead. Since I don't have diabetes. I'm like, Well, I tried to take people's a little bit of stress off them if I can.

Scott Benner 6:12
Oh, they got they got a sucker on the line. Now, Rebecca? Yeah,

Rebecca 6:15
I know. Yeah. You should look at my follow app on Dexcom. To just

Scott Benner 6:24
do the beep sometimes make music.

Rebecca 6:27
I actually have to change everyone's logos to different sounds. So I wouldn't get confused on if it's my daughter at school who's like my number one priority. You know, my husband can take care of himself and then my sister is new and hers is a baby cries if the baby cries, I text her like, Hey, you, okay?

Scott Benner 6:43
So if the baby cries, it's your sister. What's your husband sound?

Rebecca 6:47
It's like a like the siren. It's like II. Okay, your husband

Scott Benner 6:51
is the British ambulance.

Rebecca 6:53
Yeah. And then my daughter is just the regular low because we you know, when she's home, she has her phone. So I didn't want to change it. I'm used to that sound.

Scott Benner 7:00
Gotcha. Oh, my God. How old was your husband was diagnosed he was it wasn't 7570 times

Rebecca 7:05
two and a half. Oh my god. You had pneumonia. And he was in the hospital and they just poked his finger or did something. And he was diabetic. You didn't have DKA you just had pneumonia.

Scott Benner 7:18
Is there other autoimmune in his family? Yeah,

Rebecca 7:21
his family is littered another littered with a bunch of dirt like rheumatoid arthritis. His aunt had type one and rheumatoid arthritis. His mom has like Wagner's granular math, that ptosis or something which is like a weird autoimmune disease,

Scott Benner 7:37
or the other one's normal. Hold on a second. I feel like rheumatoid arthritis is pretty normal. Because you hear ads for it on TV. Hold on. So what's the other one? Her mom the mom

Rebecca 7:46
Wagner's Wagner's granular mitosis. It's like, inflammation in the blood vessels. Hers kind of manifested in the lungs, which is how they found it.

Scott Benner 7:56
Yeah, first I guess I got Wegmans when I was Googling it first.

Rebecca 7:59
No. Wagman

Scott Benner 8:03
wait granule low mitosis. Yeah, Wagner's that word is a rare long term systemic disorder that involves the formation of granulomas and inflammation of blood vessels, which is called vasculitis. It is a form of vasculitis that affects small and medium sized vessels in many organs. Commonly in the respiratory tract, lungs and kidneys. What's the impact on her life?

Rebecca 8:28
She's good. Now. She I mean, the acute onset was pretty severe. I mean, she was hospitalized. But she's, I think she takes medication for it. And it's manageable. But it's on the list of autoimmune, just kind of rare. And then you have rheumatoid and type one has had type one.

Scott Benner 8:47
You came up with a new one today. Congratulations that you know. I mean, we should have music and confetti should go off behind you. But I don't

Rebecca 8:56
know my mother in law. She could come along and chat about it. Well as she's She's a superstar because she she raised my husband and her husband her head. So my father in law also has type two. He was actually the first Omnipod user in our family. So what type two?

Scott Benner 9:10
Oh my god. How much money do you think like collectively you guys spend on diabetes here? 5050.

Rebecca 9:16
I'll actually did the math because my sister and I have been chatting with local people, you know, this whole insulin cap price cap. I was like, so how much do we actually spend? Because I was curious. And just my family. So my daughter my husband's diabetes costs $39,000 a year? Yeah, I bet those and then well, I mean, ours is like a fraction because we have good insurance. But like I actually like, looked at all of our receipts. And I was like, Holy crap. I'm so glad we have insurance. No, kids, we didn't.

Scott Benner 9:46
If you didn't, you wouldn't have CGM 's and insulin pumps for sure. And you know,

Rebecca 9:50
exactly right. And we've been through that like throughout like before we hit good insurance before it good jobs. You know, I've been with my husband 25 years. So we've been through all the phases of diabetes care and Yeah, we used to buy vials of insulin over the counter.

Scott Benner 10:03
I remember I remember. You needed a prescription for the needles, but not for the insulin.

Rebecca 10:10
Exactly. Yeah. Yeah. Like we go on vacation, forget a vial and we just go to CVS and ask for it. It's pretty cheap. Yeah, it's not cheap. We

Scott Benner 10:17
didn't send enough insulin. It's not cheap anymore. We didn't send enough insulin with Arden to college because we didn't the one. I've been saying this a lot lately, but the one thing I failed to prepare for sending her to school was that basically eating in the cafeteria was going to be like eating in a crappy restaurant every day. Yeah, so she's using more insulin. And so she texted me the day she goes, Yo, I'm not, I don't have enough insulin. I was like, I spent way too much. But I was like, okay. So I look in the refrigerator, I have a couple of vials. And I was like, but I was gonna order it, have it to the house, and then, you know, send it back with her when she went back again. But I was like, Okay, I'll hold on. And I, you know, I contacted the Endo. And the endo said something that shocked the hell out of me, Rebecca. She said, You haven't been here in a year. And I was like, that's not true. Like, that's definitely not true. But I realized that the COVID thing, oh, rolled everything into you, like, Don't come here, like zoom with us. And then when you walk out when you're in person, the last thing they do is they go, hey, when do you want to come back? And when you pick a date, except when you leave a zoom, nobody asks you when you want to do this again. And I thought, oh, but we've been working so hard on Arden's digestion issues and her hormonal stuff over the last year. I feel like I've been to the doctor every five minutes. And so I just like, Oh, I'm so sorry. You know, like, and she's like, Well, I'm not supposed to give you the script. And I was like, well just do it. Anyway, because Arden's in Savannah, and you know, I'll make an appointment. So I made an appointment. And then I had to find a, like a, like a pharmacy. So I said to Arden, I was like, hey, what pharmacy Should I send your prescriptions to? And she responded, I don't know. And I was like, Well, is there one near your dorm? And she said, I don't know. And so I pulled up a map, and I'm like, There's one here. But, you know, the town can get sketchy in certain directions. So I'm like, I don't want to just send her to, you know, a warzone. So I'm trying to I'm trying to figure out, I'm like, Well, how about where you get your groceries? I say they have a pharmacy? I'll send it there. And she goes, if you think so. And I was like, Okay, I see I'm in this on my own. Just, you know, but you know, they're gonna send her a script for her, like three months supply of insulin. And then I don't know how the hell we're gonna get it back here when she comes. Oh, my gosh. Anyway,

Rebecca 12:40
you okay, you can fly. She can fly with all that.

Scott Benner 12:42
Oh, let me just tell you, Rebecca. She does not want to fly home after the quarter is over. Okay? Because she needs to bring clothes with her to swap for the season. She told oh, yeah, we have to drive to Georgia to ship her to bring her clothes back.

Rebecca 12:57
Okay, we'll bring a bit cooler. We get together. And I

Scott Benner 13:01
pushed my wife on this. And I was like, We don't like just make her fly. And Kelly's like, what she really wants to swap her clothes. I'm like, you just make her fly. FedEx is for leave us out of this. Anyway. Anyway, so I want to know, I'm going to pick through your husband a little bit because that's a long ass time to have diabetes. So does he have any? Any impure effects from type one?

Rebecca 13:27
Yeah, he does. Like yeah, he's he has some retinopathy, that he gets laser treatments for. It's not to the point where he's blind or as even impaired vision.

Unknown Speaker 13:39
But, um, but they saw it and then get ahead of it.

Rebecca 13:43
Yeah, yeah. So they do laser therapy, and they kind of like Zapple zapped a little blood vessels that are popped in. So he does that. Every year or two. He needs those that he has some neuropathy and his feet and legs. Yeah, other than that, I mean, he has a trigger finger, which I guess is pretty common. With type ones.

I think his 20s his teens and 20s. Were a little rough. He was two, which was like the 80s and 90s. If you think

Scott Benner 14:16
Yeah. Are you a trophy wife, Rebecca?

Rebecca 14:19
Um, I mean, I met him when I was 20. He was 25. I mean, no,

Scott Benner 14:23
no, I was trying to do the math. Right.

Rebecca 14:24
We were still kids. We were still kids. You know, I just he was a friend of my college roommates, older brother and I we just met

Scott Benner 14:33
at a granola party.

Rebecca 14:35
I mean, not really know

Scott Benner 14:37
how New England are you do you need to comb your leg hair or like,

Rebecca 14:42
no, no, no, I was actually this was in New York. I went to Syracuse and we met Syracuse

Scott Benner 14:47
Syracuse, like like Syracuse, this New York event. I mean

Rebecca 14:51
Well, it's not New York City. Feel like you say Syracuse people know where

Scott Benner 14:55
I know where it is. 100% Okay, so Alright, so you guys have been together for A long time he's had diabetes for almost 50 years.

Rebecca 15:03
Right? You just turned 50? Yeah. Wow. That's good for him. That's, uh, and I thought I knew a lot about diabetes, because, you know, I was married to it. I, I mean, I've been around for a long time. I mean, I've been dealing with it's type one, but he was 25 when I met him, so he kind of dealt with his own stuff, you know, you're not a kid, he, he had it together, which I thought, you know, he just took care. And then my daughter is diagnosed. And I'm like, wait a minute, I don't know anything. And all these numbers that I like, I didn't know. 200 was bad. Like, I knew high blood sugar was bad. I knew her cute get grumpy and like the 203 Hundreds. I'd be like, check your blood sugar. And I knew what low was. I knew how to deal with that. But I like in the real, like granularity of it. I did not know anything. That's so I don't even know what a woman's body when she was.

Scott Benner 15:48
That's interesting. So when you met him, if you can remember back that far, because I'm having trouble remembering back that far. But do you do you recall? Like when you're like, Okay, I like a guy. He has diabetes. He uses insulin. Like I understand that much. He must have gotten a low at some point. So you had a feeling for that. But what did you expect the impact on your life was going to be?

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Rebecca 19:25
my life yeah. I mean, I mean we we just deal with like he taught me i when we first met and started dating, he taught me like where his glucagon was and like how to mix it. And like where he kept it and then he would showed me how to test his blood sugar. You know, we partied we were 20 Like, like he's like if I pass out test my blood sugar was like, okay, you know, drink too much

Scott Benner 19:48
didn't scare you. You didn't think like

Rebecca 19:50
no, I'm a really chill person like nothing. I'm pretty good at emergencies like it's fine. Like you're a chill

Scott Benner 19:57
data analyst. Yeah. Yeah, okay, so you, you wouldn't be a good actuary,

Rebecca 20:02
then? No, but like, I picked his I remember we were, we were partying once and we I picked him, he he, I thought he just fell asleep. But he was snoring really loud and I wouldn't wake up. And so I picked his finger, he was like 500. So I actually at that point he was on NPH are an MPH and it had taught me how to mix them. So I drew it out, mixed them and shot them up. And we woke up two hours later, and three hundreds and I was like, I must have done the right thing.

Scott Benner 20:28
I'm a wizard.

Rebecca 20:32
But like, overall impact, like we didn't get married. We just celebrated our 40th wedding anniversary. We didn't get married for like 10 years. And we just, I don't think I ever thought about it. Like, we were gonna have kids with diabetes. Okay, are you a hippie? Am I hippie? No, I don't think so. Sure, my parents would think so. I'm sure my parents would call me that, I think in the 90s I was definitely like, into fish and you know, going to those big concerts, but I don't think I'm definitely on hippie. Now. I'm like a suburban mom.

Scott Benner 21:06
Do you think your parents have a curfew as a vagabond in, in private?

Rebecca 21:11
Ever? No. Well, my sister lives on a farm like 37 acres, or 67 acres up in Maine. So I think she's way more on the hippie spectrum than I am. So

Scott Benner 21:21
when Cole was recruiting for college baseball, a main team tried to get him to play there. And they called here. And I remember just watching him on the phone for half an hour. He had this look of horror on his face the entire time. And he gets off the phone. He goes, Well, here are the highlights. And I was like, okay, he goes, the field is heated, and so are the dugouts. And he goes, Why would that be necessary? And I was like, not sure he was. Yeah, he was I mean, the actual turf. The turf is heated. And I was like, what God Rebecca, you

Rebecca 21:53
know, will melt. You know, come on, it still snows into May.

Scott Benner 21:57
He's like, that didn't sound good. Then he goes, then there was a big selling point where the coach said, we all go on a hunting trip together after the season. And calls like, do I have to shoot something to play baseball in college? Because I don't want to do that either. And I was like, Yeah, I don't think this place is for you. Anyway, it sounds like he was

Rebecca 22:14
I grew up in Maine. I love it. But New Hampshire is great. Yeah, it's not that far from from New Jersey, really? The weather? I feel like it's, I don't know, cold and icy and

Scott Benner 22:23
oh my God, when we went on that tour up there, there was a school in Vermont that wanted him to play there, too. And we went there to work out in the wintertime in an indoor facility and just walking from like, the hotel to the car. He's like, I'm not coming here. And I was like, No, I didn't. I didn't think you were like, just finish the workout and we'll get the hell out here. Anyway, you Okay, so your husband's got all that going on? You don't know who's gonna curse? You don't know anything about diabetes, basically. And and that goes on for decades like that? Yeah.

Rebecca 22:57
Like, so he just took care of his stuff. You'd go the Endo. I never asked what to say when he was again, like he just took care of his stuff. You know, like, he's a grown up.

Scott Benner 23:06
Is that how you wanted it?

Rebecca 23:08
Yeah, I mean, he didn't he that's he's always been kind of private about is diabetes. Like he didn't? Really I mean, he would give insulin, you know, give shots in public and that's fine. But he never had tech. You never had a pump. Still doesn't have a pump?

Scott Benner 23:25
does pretty well.

Rebecca 23:29
This year, Oh, tell you about? I can tell you. That

Scott Benner 23:33
story told me.

Rebecca 23:35
Well, so we well, when my daughter was diagnosed, I think really quickly she realized like, Hey, why doesn't dad have this Dexcom thing. And, and she would ask them about it. And also like he he would always Bolus like rate when he ate, like, at the same time and, like they teach us you know, with kids like Pre-Bolus Yeah, like, and she's like, why doesn't Daddy Pre-Bolus Why doesn't daddy have a tech Dexcom so I think we have a chat like, hey, you know, you're a role model for her. We gotta you know if you're gonna if we're gonna make her Pre-Bolus You need Pre-Bolus

Scott Benner 24:11
Yeah, So Kate, Kate's like diagnosis kind of forced him into the into the President with taking care of is that right?

Rebecca 24:17
Yeah, yeah. And also, we went to Disney for the first time in May. And we were talking about that whole trip and that's actually what triggered he actually got the libre to first is no game the libre two and he used that for Disney. And then we just he just got the Dexcom and I think July okay, because the labor two is garbage. No, offensively. They're not a sponsor, but

Scott Benner 24:43
well, they're not. They're not now.

Rebecca 24:47
No, they're just for him. It wasn't great. It just, it was always off and the alarms are not helpful. Like they just kind of alarm on that he's high or low. It doesn't give you a number. So he switched over to Dexcom I'm in July, and I think he likes it. I mean, he doesn't. He doesn't like stuff stuck to him, but I am. I think he does help with the lows and now he can see his highs. Like how, what happens overnight and what happens between meals and

Scott Benner 25:13
I just I left him in the gutter back and it was not at you. I was picturing the low level PR person that I'm sure the libre people forced to listen to this podcast.

Rebecca 25:24
like crap. We're not sitting at their desk

Scott Benner 25:26
going no, stop. No, stop, stop.

Rebecca 25:33
I'm curious about that new one, though. That like gives the libre every minute. Yeah, it's tiny. Yeah,

Scott Benner 25:39
now they're getting there. They really are. I mean, it's you can't it cannot hurt to have competition. That's for sure.

Rebecca 25:44
That's what I was thinking. Yeah. So now he has a he has a Dexcom. His agency is seven, which I think is the best in his adult life. I remember numbers. So he I remember like, yeah, like 15 years ago, him telling me a number like eight or eight and a half. And I don't know what that you know, I didn't have context. So I was like, Okay,

Scott Benner 26:06
did you not want to know, I guess

Rebecca 26:08
again, he was just took care of it.

Scott Benner 26:14
I'm not coming down on you. I'm just trying to find out. And so like, here's what I guess what it was my question here. So you weren't pressing to find out? You could have used the internet to learn, right? But you cut off? Yeah, you were just like, whatever. And now like, but he's got a seven like if your daughter had, what's your daughter's eighth one? Say? Six and a half. Okay, if your daughter took care of herself the way your husband did? How many towns would you burn down to find out? Yeah.

Rebecca 26:42
Well, and then again, like he has a mom. So

Scott Benner 26:46
this is her problem.

Rebecca 26:50
That's a thing like you when you're someone's wife. You're not their mother. Like, that's

Scott Benner 26:54
really making me laugh for some reason. That's her son. Not mind. I just need that guy to buy stuff. Maybe you've been married a long time. You don't even need him for sex anymore. Really? So he just basically fixed the bathroom. You don't I mean?

Rebecca 27:13
Yeah, he's, he's remodeling the kitchen right now.

Scott Benner 27:17
Is anyone else ever amazed when I say things that I have no idea about? And people are like, oh, yeah, that is actually happening in my life right.

Rebecca 27:25
Now, no, but I think like my daughter's diagnosis really did I think he said he was I mean burnouts, a real thing. And I think he was kind of in a burnout place. So no, I

Scott Benner 27:36
understand. So do you think it read,

Rebecca 27:39
rejuvenated? His like, oh, yeah, I gotta be a good role model for her.

Scott Benner 27:42
Right. Do you think he uses a pump at some point?

Rebecca 27:45
I don't know. I keep pushing it, because I think it would help. He has some crazy swings. And I was like, wouldn't be great. If you could turn off your basil right now.

Scott Benner 27:54
Oh, oh, I see passive aggressively trying to get him to use a pump. Yeah, that's excellent.

Rebecca 27:59
Well, now that I know stuff, because in the last 16 months, I feel like I got like a crash course and diabetes. And I was like, wow, I knew nothing. Zero before this,

Scott Benner 28:08
Rebecca. Have you guys been together too long that you can't just use the girls to make this happen? You don't I mean? I don't understand. If I was a woman, this is how I handle everything. I know it's wrong to say but I know I would. I know I'd be a girl who would like tie up a shirt and wear a push up bra and ask for the kitchen to be remodeled. I

Speaker 3 28:30
know. I know.

Rebecca 28:36
If he wants to get a pump, because I'm happy with the Dexcom I feel like the Dexcom goodly be life changing.

Scott Benner 28:41
So I bet he comes along to it at some point. Yeah, I really do.

Rebecca 28:46
And I think the Omnipod five, so my daughter has Omnipod five and I think I like I'm selling that to everyone I know. And I think that that that technology may entice him.

Scott Benner 28:56
Good, good. That's excellent. Okay, so let's find out about your daughter's diagnosis. I mean, did you ever think, well, my husband has type one diabetes, there's people on his side of the family with type one. Clearly our kids are gonna get type one or did you not think of it that way?

Rebecca 29:12
No, I thought even when I was pregnant, I like Googled it. And it was like, when I Googled it, it was like 7% or 10% or something. Whatever, I read that 10% I'm like, Oh, 10% No biggie. I can handle that. And so I when they were little my kids were little every time they would get sick or they would wake up from like a night tear and just screaming for no reason we would poke their finger and test their blood because I was like, you know, if you're throwing up or you're screaming for no reason there's something wrong and I mean, their blood sugar's were fine. And my daughter eat so. So she's in first grade and she, we I think we even poked her finger, like three or four months before she was diagnosed. Just I think she got sick. We poked her fingers she was fine. And then that It was the end of the school year she had in her first week of summer camp. And she was at summer camp that whole week. She had been, you know, running around, like crazy, you know, at summer camp, and I was thinking, she's really tired. She's She was really tired. She was wetting the bed like, epically. And I was like, Oh, she's so tired. Like, she's not getting up in the night. That's, you know, crazy. And then the last day, we're driving her up to summer camp, and she gets out of the car, you know, to bring them over to the counselors, and I put her water bottle back in her bag. And I'm like, Honey, did you drink your entire water bottle on the way here to the cabin thirsty? That's like, really weird. And so that's what clicked in my head, like, oh, wait a minute, like, so when she got, but I didn't. You know, I was like, Oh, well, she's fine. We'll check her blood sugar when we get home. Well, that night, I forgot about it. And then at night, we gave her pizza. And we'd every Friday, we'd give pizza. And then at that time, I was a call. Yeah, I heard. She drank all that water. I need to check her blood sugar. So we pulled out our extra meter and checked her blood sugar and just said hi. And I just like, I instantly knew I was like, Oh, she's diabetic, like, but you know, at heart, like, like, I just knew, yeah, but it's like nine o'clock at night. So I guess called the nurses line at the pediatrician cuz I'm like, what do we do? Do we go the doctor? She's fine. Like she's jumping around, you know, but she's not throwing up. She's not like, what do we do? So we get called the nurse nurses line left a message. They left they didn't get back to me till the next morning. And they're like, You need to go the emergency room. And of course, then I felt like the worst mother ever. Because I was like, I just

Scott Benner 31:29
did you have no, like input on this?

Rebecca 31:33
Oh, no. I mean, he was like, I mean, it was just that night that we were talking about it. And you notice she's drinking a lot. And then when we took the high I was like, what do we do? And he's like, I don't know, what do we do? Do we go to the emergency room? Do we go to

Scott Benner 31:45
Rebecca, make a ton of money. That's all I'm saying. Also, I like mine.

Rebecca 31:52
My only solution was well, I'll just leave a message at the pediatricians office.

Scott Benner 31:59
Again, you guys are funny. Can I ask two questions? I loved your phrasing. This isn't a question give pizza. We give pizza on Friday. That was a fascinating like, like sentence structure.

Rebecca 32:08
That my mother my husband would call it a main ism. Because I mean, I feel like we we cut out a lot of words. My mom does the same thing. It's fantastic. Loves to mock me.

Scott Benner 32:18
We give pizzas like what in the hell? And also how do you get away with smoking weed when you have a government job? I don't understand. I don't smoke anyway. That's insane. That's not true. Are you drunk right now? Are you drinking? What's going on? Rebecca? I love you. This is the this is your you've got this new england vibe about you? How is that actually a thing? It's fascinating. Oh, no. It really is fascinating.

Rebecca 32:43
You like I've lived here too long.

Scott Benner 32:45
There's there have been other sisters that grew up around you that have been on the podcast? Have you heard them? I don't think so. Okay, at the end, I'm going to tell you who they are. Because there's a moment where I'm like, am I talking to one of those girls right now? Like I couldn't. You guys have like a very specific way about you? I love like the kids blood sugar's high. And you're like, I called someone.

Rebecca 33:07
Well, then, of course, the next morning that, you know, they call me back and they're like, Oh, you need to go to the emergency room now. And I'm like, Okay, I'm like, she's fine. Like, I mean, she was we were eating breakfast. I actually did check her fasting. I was like, oh, I should. In the morning. We checked her fasting. She was like 260 I was like, Oh, we really need to do something. So when they called me back, they're like, Oh, the emergency room because I was thinking oh, we just need to I just need an endo this kidneys insulin. Like I was kind of. I don't know. I didn't know what I know.

Scott Benner 33:35
I love you. I really do. I swear to you, I would when your

Rebecca 33:40
kids not lethargic. I'm the kind of mom like, you know, they have a fever as long as they're not lethargic. And they're not throwing up and listless. You know, they're fine. They'll they'll get their, their system will figure it out. It's when they're acting funny. And she was acting funny. She was acting normal. I

Scott Benner 33:55
should have married you. I swear to God, like I get my balls broken by a type A woman every 36 minutes. You're just like, it's fine. Don't worry about it. We'll see you tomorrow have pizza. Let me give pizza. Oh, I swear to God, I'm gonna go

Rebecca 34:10
eat strawberries and a bunch of breakfast in the we took in the emergency room.

Scott Benner 34:14
I'm gonna go smother my wife with a pillow and then I'm gonna come back and make a serious proposition to you. Okay, because I am tired of having my feet held to the fire.

Rebecca 34:22
I think my husband would have a problem with that.

Scott Benner 34:25
Well, I could take him down. He's got to hire a one. See, I think I can get him. No, but But okay, so you're at the hospital with her. You don't know what to expect. I also

Rebecca 34:37
and it's COVID so we're I was that's the other thing. I was like, I didn't went to the hospital because you know, middle of COVID and COVID would be way worse than diabetes at this point. But they got us right in her blood sugar was like, or 95.

Scott Benner 34:52
So like after that breakfast. Yeah. What do you have for breakfast again?

Rebecca 34:55
I was strawberries and you know, just real pure

Scott Benner 34:59
sugar. Like from Jesus or sugar Yeah, now she can't even eat cereal. So it's, I was thinking when you saw the 260 number, your husband was probably like, that's fine.

Oh, by the way, he's Zoey and Roxy are the girls I'm thinking of it's Roxy. Okay, Episode 376 and a follow up episode 522. If you don't listen to them and think, Oh, I live across the street from those people, I'm gonna be completely surprised, although I think they're from Vermont. But at this point, I'm thinking this is all the same thing. So

Rebecca 35:29
it's all the same thing. A lot of people think they're all the same. Yeah, so they got us right in. And then they did a saline drip and did some labs, and I mean, federal hot dog. It was really surreal. And then the pediatrician comes in, and she's like, well, she's not DKA. She's. And she said, Your, she said, your husband has type one. So you know what to do. We're gonna give you Hema log and basic lar, and discharge you and I was like, wait, what, what? And they actually said, Well, your husband is type one that he knows what to do. And he actually they got the gave us one of those carb counting sheets with them how to do a calculation for both your carbons, linen, your correction, insulin, and then they FaceTime with my husband, and it was like a test. Like, could he fill it out? Okay. He did, yeah, we pass. We could do the math, they gave us a really pulmonary ratio, like current ratio and correction factor. And pass the test. I can do math. Great. Thank you.

Scott Benner 36:39
I'm surprised the two of you are alive. What do you think of that?

Rebecca 36:42
And then they discharged us and they're like, well follow up with Endo. On Monday. I was like, okay, so we had two days of just like, giving my daughter insulin and

Scott Benner 36:52
not really knowing why or how or anything. Well, I

Rebecca 36:55
mean, we knew I mean, we fall I mean, we knew how to count carbs. We knew how to give insulin, but I was terrified. I was I think I poked her finger, every hour, because I was like, wait a minute liquid if she. But honestly, it was such a really planetary ratio that it barely got her in the two hundreds the whole weekend. Right? And I guess that's what they want to do. They want to bring you down look slightly, right? Well, you don't,

Scott Benner 37:16
I'm sure. I'm amazed at how, after all this time, it's just really fascinating. After all, this time with your husband, like you really had the exact kind of like, experience that everybody has, when their kids diagnose like, you're just like, I don't know what I'm doing. Please don't trust me with any of this. And you know, what

Rebecca 37:35
he did? Like, when we got home, I was at the ER with him because they only allow one person in the ER, I was at the ER with my daughter. You know, we're FaceTiming with him occasionally. And then when I got home, then he's like, he taught her how to give an injection. I mean, my daughter has watched injections her whole life. So that didn't freak her out. I mean, poking her kind of freaked her out. I think the worst part for her was the fingerstick. Like, you know, doing. Doing the tests. Yeah. No,

Scott Benner 38:00
I hear. Do you think? Was there any comfort in it for her that her dad had it?

Rebecca 38:05
Yeah, I think she I think she. Yeah, she's like, we're the same now. And yeah. When she was seven?

Scott Benner 38:12
Yeah. What does she think? I

Rebecca 38:14
mean, I think she was held. We say that again?

Scott Benner 38:16
A year later. Is it still striker the same way you think?

Rebecca 38:20
Um, I think so. I think she's, I think that the novelty has worn off for her. So she was on MDI for like six months. And then, of course, I listened to the podcast so I I did that 30 day trial for dash so we did the dash party in January. I know my my sister calls me fan girl because I like literally listened to all your all your ads. Oh, she's like, is there an ad that you haven't like, bought into? Because I did the trial not because of you. And then I was really mad because my son.

Scott Benner 38:48
The reason you know your kid is gonna get diabetes one day. Yeah. Okay. Well, first of all, how your sister Shut up, because I don't do the ads. You don't get the podcast, so I don't know what she thinks I'm doing over here. But I gotta I got bills to get an amen. Yeah. So yeah, so we

Rebecca 39:03
did dash with her. We did the 30 day trial, a dash. And then when Omnipod five came out. We had just changed insurances. And I was like, Oh, they're not going to cover it. And they covered it right off as soon as it was available in May, June, and we got it. first of July. Good. Wow. Good honor.

Scott Benner 39:21
Yeah. Okay, so let's, let's finish up. Although I'm gonna ask about your sister at some point. By the way, I meant to get to the on the pod five like a half an hour ago, but I swear to you, I love you. So we could do this forever. Doesn't matter to me if we ever talk about Omnipod vibe. So let me just make sure I understand the the timeline. Your daughter was on MDI for six months or so. On the dash on the pod dash. By the way, I don't usually do this but omnipod.com forward slash juice box and then and then from dasht in July, which is now August, September, about three or four months ago. You started on the pot five Yep. Okay, then obviously, it's the first algorithm. You guys are an amazing test case because you don't you've never used it before. She's fairly newly diagnosed. How are you finding it? Well, how first how was the transition from dash to Omnipod five.

Rebecca 40:14
I like jump for joy because we weren't getting great. So she came out of honeymoon, or I guess we still technically honeymooning. But in December, she was still in MDI. And she went from like, 10 units a day to like 20 units a day, in like a couple of weeks. And it was like a train wreck. We could not get her numbers down, and then she started dashed the next month, and we got it. I mean, we got it better. But we still that first agency in March was seven. She was 6.6 on MVI. And then I think the combination of coming out of honeymoon and just figuring out the pump. She went up to seven, and I feel like on dash, we kind of figured it out. But we still were like fighting with her. Getting her basil, right? And kidding that she gets a lot of every night nighttime spikes for hormones. She's grown like four inches in the last year. Yeah, it's, um, I feel like we never got a great, we got great results. With Dash, there's just a lot of fiddling, and it's just a lot of work, a lot of thinking. And then when we went to Omnipod, five in July, I felt like I could breathe again, because I wasn't up all night correcting, I wasn't, you know, then you'd overshoot and have to then correct lows, I feel like Omnipod five really gets all those lows. It also just simpler like the system is simpler. So there's, I like the in automatic mode, it takes away your temp, Temp, Basal and extended Bolus, because then just caregiving is easier, both on my part. And then when we give our caregiving to the school and to family members, all I have to tell them is like put in her carbs. And if she beeps high, try a correction on the pump. And it's very simple. And then won't you you know, you always teach them how to deal with low blood sugar. But the system itself is just simple. Like there's one button. I feel like then that's probably how they designed it just really simple.

Scott Benner 42:04
No, they made it for you. They really did. Yeah, yeah,

Rebecca 42:07
they made it for me and caregiving, like caregiving, I know people are, you can definitely get better numbers by settling but like you really like if you need simplicity in your life. Yeah, this was by far, so simple. You know, coming from the dash to write the Omnipod. Five, and we were getting, we're getting better results for way less effort. I mean, I feel like if we fiddled more, we could get her into the low sixes or fives. But, you know, I was ecstatic with the 6.5. You know, just

Scott Benner 42:37
No, I, I understand. And I actually, you know, first of all, there's no judgment for anybody's desires about their health, like, whatever you are shooting for is fine with me. But I've been making the point, I think for years now. While some people argue with me like, well, you know, I don't know, there's like a hierarchy. That's like a, you know, a drop down list of how hard people want to work or how much effort they want to put in like that you don't I mean, there's, there's different people, some people are fiddling constantly, and they're happy to be involved in that. Some people would prefer for it not to be so intensive. And some people would like it to just be like, Look, this thing does the thing, and I let it go. And whatever happens happens. And I like that, that everyone is represented in here. And I think only pod five is is set up exactly for that. It is set up for people like you who are like, look, I do not, I can't like I can't be fiddling with this thing constantly, like let it make some of the decisions. And I think you're the I think you're the majority Rebecca.

Rebecca 43:36
Yeah, yeah, I mean, I would love for it to be easy. I mean, we still correct a lot, especially at night. It does not keep up with those hormone spikes. We I mean, we correct between nine and 12 at night, every hour and a half, two hours just to keep on top of it. Because it just it can't candle it and I know it's for safety reasons. It's not going to dump this week when she was on dash her basil between 9pm and 12pm was five times per day, basil.

Scott Benner 44:00
Yeah. Oh, no. So I got like I said earlier, I don't know if it's when we were recording or not but artists at school and sick right now and has her period. And over the last like three days I've given her like she and I have like together talked about and given amounts of insulin that no one would tell you to do. And most of the time that's just keeping her under 200. Exactly. Yeah. And the like the algorithm based on your settings would never know like, you know, you can say like I was talking I interviewed somebody yesterday, using the 670 G six, eight iPhone Jesus, why does Medtronic name their stuff like that? Like why not just call it something like Shazam, so I know what the hell it is. But it's whatever their newest algorithm is. It's available only overseas right now. And as I'm talking to her, the girl goes lucky. You still have to be involved in these things. She's like, I'm afraid people think you're gonna put an algorithm on and never have to be involved. Again, that's not the case. It doesn't matter if it's tandem control like you on the pod file. Over the Medtronic, you need to be involved. It just the level that you need to be involved changes pretty significantly. And it does if we're being honest. You know, hormones are tough. So it could end up being easier for prepubescent kids and men, I'm guessing, you know, over women who get their periods. So, you know, anyway, but it sounds like you love it.

Rebecca 45:23
I do love it that mean, there's some things I the the hormone spikes can't handle. I don't love the activity mode on it, we don't use that. It's a little too good brings the target up to 150. And I think it lowers the algorithm or makes the algorithm less strong. We actually use when she goes cheap. My daughter's a dancer, and she's sometimes at dance class for like five or six hours. And we'll just move our target to like 130 for that period of time.

Scott Benner 45:49
Yeah. So the back when they're done. Yeah, the activities too aggressive. So you just you pick a higher target instead of though? Yeah, the one that

Rebecca 45:56
right. So she's at 110, most of the time. And then we do want 30 for dance. And that seems to work that we tried activity mode a couple times. And it just she would go one at 200 Just kind of creep up too much. Too much. But it works. That little tweak worked. And it's a little bit of a pain, because if you forget about it, you're like, Wait, why? Why is she creeping up?

Scott Benner 46:18
So so how when do you turn it on prior to dance? Or when dance starts? Or how do you handle that prior

Rebecca 46:23
to dance? Yeah, usually on the way there, I'll just go into the target glucose setting in there. And I'll just roll it up to one to 130. And then usually when she gets home, I'll roll it back to 110. But that's a manual thing that can't put a timer on that. I guess that you can put time slots, but she doesn't have to answer every day. So I do I do it manually.

Scott Benner 46:43
Oh, wait a minute. I didn't know that. You could time slot targets.

Rebecca 46:47
You can Yeah, you can. So you have kind of like a different overnight target. Different school target.

Scott Benner 46:52
I don't know. I don't know that. That's a great feature. Yeah, yeah. Except for you're saying you can't use it in this specific situation because she doesn't dance every

Rebecca 46:59
dance every day at four o'clock. I could Yeah, she doesn't.

Scott Benner 47:02
Okay, so. All right. So now you have like a year's worth of experience with diabetes. And you said her agency's like six and a half. That's excellent. Jack has how many?

Rebecca 47:17
Key? Well, the original trial net, you know, figure poke said three antibodies. And then when the Joslin diabetes Center in Boston called us, we came down for like a follow up, and they ended up finding five antibodies. So that was like three months later. And now he's in the pathway to Prevention Study, which is so he goes every well he was going every three months now he's going every six months, where they're you do an oral glucose tolerance test, every every time we go down to two hour test where he drinks 100 gram glucose drink. And then they test his blood sugar throughout the two hours. And the first time we did it, I thought I had another diabetic because they they came back with his his post to our glucose was 200. And I guess if you have two of those tests that 200 in a row that's diagnostic, clinically diagnosed as diabetic. And I was like, oh, but that so that was in March. They brought us back a month later, because they're like, We need to redo it because if he is diabetic, we know you need to go see the Endo. So we went back, he did the oral glucose tolerance test again, he was 173, which after the two hours, which is impaired glucose, which is like, I don't know if you've had people talk about the three phases of diabetes onset, but phase one is just just antibodies. Phase two is antibodies and impair glucose. And then phase three is clinical diagnosis. So he was kind of in that phase to this in April when he went back. And they're like, well, we'll just we'll have them back in three months. He's not diabetic yet, but just you know, watch him if anything happens, you know, you know what to do call the ER. Now go to the ER and then we just went in September and did his test. And he was his to our oral glucose tolerance test was 130, which is normal and his agency was also normal. So the only thing we added after talking to the endocrinologist at Joslin is we added vitamin D, a high dose vitamin D, and we audit added some high dose of fish oil, which there are some case reports that say it can extend honeymoon and it can also extend if you're predisposed can not prevent onset, but like delay onset. So at this point, we're just kind of trying to delay onset with whatever we can. He's 12 So if the endocrinologist said if we could get through puberty, that spike of hormones at puberty, get him on the other side of puberty before he's diagnosed, we'll just be in a better place. So that's where we're Right now we're just heat index, vitamin D fish oil. We get our oral glucose tolerance test every three months. And

Scott Benner 50:07
well, I have a question when you when you tell him this, how does he respond?

Rebecca 50:13
Ah, he first was like, I'm not going to do a study, like I use 11 At the time, and yeah, you know, I mean, he's a classic gamer kid 11. Like, just he was like, now, I'm not gonna do that. I'm like, Well, Jack, I mean, this, originally, we pose it as this study, you might be able to prevent type one, because at the time, we thought he might be able to get into one of the clinical trials for the prevention drugs that are out there. Yeah. So that's how we we posed it to him. We're like, hey, you know, if we can do these tests, maybe you can qualify for some medicine that would then prevent Type one from happening. And then you wouldn't get type one like, Dad and cape, so. And then he was like, oh, yeah, let's do that. And now he's, he was a little unsure about the first oral glucose tolerance test, because they had to put an IV in, but now he's pretty used to it. We've been on there three times. And he's pretty used to the vitamins. We tell him like, again, the vitamins might delay or prevent diabetes, but we're not sure. Again, I'm not holding out hope. Like, this is like a magical cure. But no, at this point, anything that helps.

Scott Benner 51:18
Yeah, no, I understand. I'm wondering more about, like, his, like, he knows he's, at some point in his life likely going to get diabetes. Yes. And but what's that? Like? I'm sure you had to tell him that.

Rebecca 51:30
Yeah, yeah. And we're still at the point where, like, you don't have diabetes yet. That's what we keep telling him like, then then we're gonna do everything we can to prevent that, but we might not be able to. And that's what we tell them. I'm like, we're not. So do you not gonna, I don't I never pose it. Like you're gonna get diabetes because of this, because that would terrify an 11 year olds, but

Scott Benner 51:48
no, no, I'm wondering if like he's using his kind of, you know, like, his age and his ability to just go like up, you know, anytime anything 15 minutes or longer from now is in the future. So, yeah, I just, I don't think about it, or do you think it like, have you seen any, like impacts on his psyche? I guess what I'm wondering,

Rebecca 52:08
no. And he's, he's a really anxious kid. And that's part of the reason why we talk about it. The way we do is he's, he has, like generalized anxiety. So he has anxiety about things. So we talked about it. We give them the facts, but we're not I'm not going to worry him unnecessarily.

Scott Benner 52:26
Oh, no, I wouldn't expect. I'm just wondering if how he responded, that's all

Rebecca 52:29
and he's fine. I mean, he seems fine about it. He's, he's, he. He likes his trips. Jocelyn. We get a Subway sandwich afterward. I think that's probably why. I mean, we have subway in our town. Don't think we're live so far away from real. We don't

Scott Benner 52:44
think subway is a treat. That's what you're worried people are gonna think right now.

Rebecca 52:49
Yeah, so no, he seems I honestly we talked about it, but I think he just doesn't want think about it. Like I think, again, like what you said, like, it's not gonna happen to him today. So he's not gonna think about it

Scott Benner 53:01
right. Now. That's how I imagined it would go. Honestly, I just was wondering,

Rebecca 53:05
when it happens, it happens. We're not I mean, yeah. Yeah, we'll deal with it with with what it comes

Scott Benner 53:11
by getting a part time job to pay for the

Rebecca 53:16
God that's like, do they have like a punch card? Well, at this point, my daughter and my husband are on the same. You know, they're both ANOVA log and they both have Dexcom. So we kind of just entered change the pile of supplies. Yeah. And actually over the summer, I plopped in old libre on on Jack just to see and I wore one too, because I like it. If you wear one, I'll wear one. And just fascinating. He actually had he didn't get over 100 The whole summer. You know he was eating eats? Typical 11 year old 12 year old.

Scott Benner 53:45
How were you? How were your blood sugar's when you were looking?

Rebecca 53:48
I mine are low. I like barely get over 70 You know, just sitting around and then, you know, I might get to 90, but really try. Yeah, that's something which is crazy, actually, that really, that really helps you kind of understand how the body works. And I don't, I never really freaked out about 70. But like, I really don't freak out about 70 anymore.

Scott Benner 54:10
No, yeah, no, I think wearing a CGM. If you don't have diabetes gives you a lot of insight into what your goals are when you're managing insulin. It did.

Rebecca 54:21
And those spikes are normal like, okay, yes, my daughter and husband spiked way more than I do. But like, I don't have a flatline either. Like, you know, I go up 3050 points and come back down. Like, yeah, like, that's pretty normal. Like,

Scott Benner 54:36
I think, I mean, if I can, I think the the idea about avoiding spikes with diabetes isn't that you are so worried if a blood sugar goes to 140. The problem is, is that the 140 turns to the 180 and the 180 turns to the two

Rebecca 54:48
stays there. Yeah, yeah, I get worried about with it stays there. If it goes up comes right back down. Right. I don't get too worked up about this, quote, quote, Spike. It's if it goes up and stays there, and then I'm like, wait So that's something else. Yeah.

Scott Benner 55:02
I think of the spikes more as indicators for like, generally speaking how well I'm doing with the insulin. Yeah, you know what I mean? So it's,

Rebecca 55:10
and then the hit of the food, like, we've kind of dialed my daughter's breakfast into just a handful of things that we know, she doesn't really go over 150 Because I just can't send her to school with her, like, pushing 200 Because she, when she gets over 200 She just is not in a good learning space. So we we have a handful of foods that you know, she eats bagels and waffles and English muffins or whatever, for breakfast, but we know how to dose for them. And I can you know, she just goes up to 141 50 comes right back down and hangs out. 110 pretty much

Scott Benner 55:40
all day long. Yeah, that's cool. That's, it's a man. So that

Rebecca 55:43
Omnipod five is really great for that. And then I know, like, I'm not worried about it over shooting on the bottom end, like, you know, maybe going down to 70. Because I know Omnipod will kind of dial down or Basal if if I if I missed it, you know,

Scott Benner 55:57
how many how many, like, serious lows has she had on all the power five?

Rebecca 56:02
Um, oh, God, I don't even think she had one actually a couple of days ago, but it was, we were in the car and we were eat, we ate McDonald's. I mean, we eat really healthy suffering. We were having McDonald's on the way home from visiting my brother. And she was like, I'm gonna have a cookie too. So we dose for the McDonald's and the cookie. And she didn't actually end up eating the cookie. And we got home and she hit 70. And I'm like, oh, you know, have a glucose tab. And and then she kept going on, like, what is going on? And we finally started going back through her dosing. And then I saw a 26 carb dose that my husband put it in while I was driving. And I was like, what was this 26 carbs? And he's like, Oh, that was a cookie. And I'm like, Hey, did you eat the cookie? And she's like, No, and I'm like, Oh, well, there it is. You have 26 carbs. For 26 carbs. We now No, but so that wasn't an Omnipod problem. That was us. misto. You know, right. This dose that she didn't eat the cookie, Rebecca. But other than that, no. Like, like she's,

Scott Benner 56:59
well, that's great. So I mean, that's not a low that's you guys. bolusing too much. But

Rebecca 57:04
exactly. But all the lows, I think she's had a couple that might hit the low 60s. You know, we do a glucose tab. Actually, that's what we've learned from you like what they treat, they say you need 15 grams of carbs. I'm like, Okay, I'm seven, eight year old does not need 15 grams of carbs. One. Yeah, right. It's one glucose tab usually is what does it for her? Sometimes we need a juice box. If if it's like a down arrow, down arrow then all

Scott Benner 57:31
it depends on the situation. Also, this sucks that this cookie story was about your daughter because I was gonna respond. Rebecca, Don't you hate it when they don't eat the cookie? But it's so inappropriate, because it was about your daughter. So I let it go. But I'm bringing it up now. Because it's allegedly that's all.

Rebecca 57:48
No, it's, I feel like Omnipod five that's like, if lows are an issue. Those are definitely that's where it shines. That's yeah, I agree. Yeah, the fact that it could just dial down enable dial down the the Basal away from the controller, which is even great. Like she was at the waterpark this summer, way away from me away from all our devices. And it just did its thing like it would like she's going on waterslides. And she's in the water. And it's talking to the Dexcom the whole time. And it

Scott Benner 58:15
can't be said enough that the algorithm lives on the pod. And the pod in the Dexcom are talking to each other and the controller or any other accoutrements, which there are none off. But the controller does not need to be anywhere near those two devices for them to work.

Rebecca 58:30
And that's also one of my favorite parts. Like she does not need to be tied to anything. So you know, yeah, so just put those stretchy wraps around it when she's in the water and let her go. That's

Scott Benner 58:40
excellent. Look at you. You've got this all figured out. Now, you went from not knowing anything to really being on top of this.

Rebecca 58:47
Well, some sometimes I have to say this podcast has helped a friend of mine. It was like a friend of a friend that Sunday that she was diagnosed, texted me on Facebook and was like, Oh, my friend, friend's son is diabetic. You should talk to her. So I messaged her and she's like, You need to listen to the Juicebox Podcast. I was like, What the heck's the juice? Yeah, I started listening to it that Sunday. So she had been diagnosed the day before. And actually that Monday, we went into the endos office, and I actually had heard a Dexcom ad. And we went into the Windows Office that Monday and they're like, What do you need? I'm like, I need a Dexcom.

Scott Benner 59:18
Oh, Rebecca, I appreciate you saying that. This is for all the sponsors. If, again, I know you're listening. I don't get credit when Rebecca goes to the doctor's office and buys Dexcom or when she gets an Omnipod five from the Endo, but I still sold it. So don't call me and Hawk me in China about clicks. Okay. That's so I'm sorry.

Rebecca 59:38
No, I knew about Libra because my husband had had gotten a Libra a years before. So I knew about Libra and actually, that's I was like, I'm gonna go in and ask for Libra. I didn't even know Dexcom existed. And then when I I'd heard a couple, I listened to a couple of the newly diagnosed episodes and I'm like, Oh, this Dexcom thing sounds awesome.

Scott Benner 59:56
Okay, yeah, I'm gonna edit this out and send it to people. They leave me the hell alone. Don't get us there. Listen, the advertisers fantastic. I've really good relationship with them. I just, there's this one aspect of it that it's not quantifiable. You can't capture that. Yeah. And you can't be captured. And we all agree that it can't be captured. But then when it comes time to pay someone were like, Well, what about the clicks? And I'm like, Well, what about the agreement? We have that I'm probably selling a ton of them in the freaking doctor's office, like, oh, yeah, I know. But I can't show that to my boss. And I'm like, I don't care. So anyway, that's basically the conversation. You people don't know how much work I put into keeping this podcast going. I'm telling you, it freaked. It's upsetting something,

Rebecca 1:00:37
obviously, the ads work because I'm like, you know, I think I've clicked on everything you've ever sold?

Scott Benner 1:00:41
Yeah, hey, you've gotten Athletic Greens yet, I just started with them. Athletic greens.com forward slash, just

Rebecca 1:00:50
be like, I'm doing all this work for you. You don't even have to do ads for this show.

Scott Benner 1:00:53
I really do appreciate that. Now, listen, I won't go into a long conversation about it. But cuz I still want to ask about your sister. But you don't know. It seems like you just you pick up your phone, and there's a guy talking to you. But I work about 70 hours a week on this podcast, I can't have a job, the ads have to work. And and then the advertisers have to keep coming back. You know what I mean? Like they it's year after year, or as soon as they don't come back, it's over. And that's you know, so there's a lot of pressure on my side to keep everybody happy. And I am. I don't take ads from just anybody, I could do that. And it would make my life easier. But I don't. So I stick with products that I know are great that I know you guys need. And, and then it's just there's a whole business side of this that I just I hate obviously, if you listen to me long enough, I really am. I'm not cut out to be in business. I'm cut out to make this podcast. So I was in a meeting the other day. And it ended. It tried to imagine I was in a meeting with two people from a PR company that work for a company. And then I was the that also in that meeting, were two people from the company. I know that's hard to understand. But there's a company I was meeting with them. They hire a PR company to manage stuff that happens. We're setting up an episode that I think is going to be great for you guys. And we're talking about how it's gonna get set up and regulatory things and what can't be said. And like, these are just mind numbing meetings. And it ended. And I realized that I had said fuck twice in that meeting. Because I don't belong in business is what I'm saying.

Rebecca 1:02:36
Well, it's obviously working. I mean, I wish they could count. You should like do a survey. Like how many of you have gone to your endo asking you for a Dexcom or Omnipod?

Scott Benner 1:02:43
Yeah, that's, that's your math brain. But what will happen is the number will come back and they'll only want to pay for that number. And I'll be like, well, the whole world didn't hear the survey. And they'll be like, there's no way to get around this. It's actually in their defense. It's an unwinnable situation, because they give me a link, and they can track the link and I can't Yeah, and then I have a link that I can track. But if you guys type it into a browser, then I'm not tracking it either. So I have no leverage, either. It's just a very weird position to ban. But it obviously works because I mean, this podcast is freakin huge. I don't want to be argued with this. What I'm saying Rebecca, don't trifle with me. All right, but you them. All right now. Are your sister diagnosed at 30 years old? Is that right?

Rebecca 1:03:32
Yeah. Well, yeah. Just before she turned 30, January of this year. It was kind of a it was funny, because at Christmas time, I saw her Christmas. So just a week before she was diagnosed, and she were, you know, having Christmas. We do Christmas Eve with all the siblings and we're having big meal and she was complaining how thirsty she was. And I was joking. I was like, Well, I've Kate's metered. You want me to test your blood sugar. And she's like, Haha, like, because I obviously, like you think everyone has diabetes? And I'm like, No, really, I'll test you. And she's like, No, I'm fine. And then she texts me the fourth of January. And she texts me she's like, I'm, I'm at my primary care. My agency's 14 I have diabetes. I was like, what? And they were like they're sending hold you? Yeah. I was like, well, if you'd listened to me, well, then they would have ruined your Christmas, right. But I was like, she's like they're sending me to the ER, I was like, well do and her husband is a technician. He works like in the northern part of Maine. So he's not there during the week. He's only there on weekends. And her I knew her husband was probably four or five hours away. I'm like, do you need someone to meet you at the ER and she's like, that would be great. So she was sent to the ER, and I live two hours away. So I started driving. I dropped actually I dropped my daughter off at dance class. I got in the car. I texted her I was like while you're waiting listen to this podcast and I actually texted her your first you know, newly diagnosed episode. Like while you're waiting Listen to this

Scott Benner 1:05:00
Episode Episode 210. Rebecca is the most popular episode in

Rebecca 1:05:04
Yeah, so I texted her that said, like, actually I listened to your podcast on the way up as well, that two hour drive. I didn't listen to that episode, I listened to a couple other ones and yeah, I met her I met some Well, it's of course it's COVID Again, I got to the ER, the nurse comes out. She's like, Yep, she's okay. She's on a saline drip. I've never seen this before. And I'm looking at this nurse. And I'm like, she's like, She's crazy. And she's like, never in my 30 years. Have I seen this before? And I'm like, What are you talking about a woman with a high blood sugar? Like, she's like, No, no, she just, I don't know what my sister is tiny. She's like 110 pounds. So they were they basically diagnosed her with type two diabetes, 110 pounds 400 blood sugar? or can anyone see type two diabetes? And I'm like, uh, are you sure? They're like, so when they finally discharged her though, they're like, she's they said, I have type type two diabetes, they want me to go get a meter and make an appointment with an endo. And I was like, that doesn't sound right. Like that, just so literally, I picked her up, we went and got sushi. We picked up a meter at CVS. And we went home. And I'm like, You need to call the Endo, like seven at whatever time they open 7am in the morning and demand that you go see them. Because this doesn't sound right. Your blood sugars are really high and they're not coming down. This does not sound like type two diabetes. I mean, we have, we have a couple type two diabetics in our family or our family. Right. And my father in law is of type two. I'm like, this doesn't sound like type two. And like the acute onset of it does not sound like type two. So let's go see an endo. So that next more I stayed overnight at her house next morning. She got into the Endo. I went with her but her husband actually finally got home and went to the Endo. Whether the only it was that was the only person that could go in I waited in the waiting room. And I guess the endo was one of these. I don't want to I don't want to swear but like aihole endos. It just literally came in hot was like, you don't have diabetes. And she's like, What? My agency is 14. My blood sugar is over 400 What do I have? He said it's due to steroids because she was getting steroid injections for a bulging disc disc. And there is a you can get hyper glycaemia from steroids. Yeah,

Speaker 3 1:07:19
but 400 Yeah. And I was like, Okay, well,

Rebecca 1:07:23
I mean, if that's it, fine. But he she started she had actually been having gastro some eyesight issues over for three to six months. He's been had, she'd like explained some other symptoms she'd been having for three to six months. For six months. Right. Yeah. And I think finally, by the end of the conversation he did he did labs, and he did prescribe insulin. He so he did actually do full antibody workup. And did actually she did leave with humulin. Actually, no. He will log and basic are

Scott Benner 1:07:57
well are doing anyway. What does she used what how's she doing? Does she still listen to the podcast?

Rebecca 1:08:03
She she does you actually I think is on your schedule for February. Oh, cool. She does. Cuz she actually she does. She's doing okay. She got rid of that Endo. Because he was just not helpful at all. He was he gave her a sliding scale. Just really crazy stuff. She does have three antibodies. So yeah, she's type one diabetic. She's actually in the topple study. Now. He's actually at Beth Israel. Deaconess, today, getting her. There's a 48 hour observation period after your first injection of the plasmids. So she's a we're big sciency family. So she's, she's a PhD candidate. And she's like, I'll, I'll do any trial that would, you know,

Scott Benner 1:08:46
ya know, how

Rebecca 1:08:47
about the situation. So I want to say she's in the topple study.

Scott Benner 1:08:51
I'm pushing that right now. Trial note is paying me to push that right. Yeah.

Rebecca 1:08:57
So she just got her first infusion. And yeah, it's supposed to slow or stop the immune system from attacking her beta cells because she actually still has quite a bit of Basal beta cell function. She's been honeymooning pretty hard. After that acute diagnosis, where she was on quite a bit of insulin. Now she's down to like 10 units a day. And, but she's pushing like an agency of 5.8. Like she's doing great. She's on a Dexcom. Good for her. Yeah, she's Yeah, she just announced she's doing this topple study. She's really hopes that because it was as an adult onset. And just having that endo experience and like the nurse telling her that she's crazy, and she's never seen anything like it before. I mean, she just had a much different diagnosis story than we had with my daughter. My daughter was very cut and dry. They were super nice. They were the endocrinologist and the diabetic educators we saw were fabulous. And we got great care and I feel like maybe where she lives or maybe just the endocrinologist he saw and her age, they just treat her completely different. Like you're not a diabetic and you know, we're gonna Give you a sliding scale and like a sliding scale like what does that?

Scott Benner 1:10:03
Well, here's what you've brought up. Don't go to the hospital in the woods. That's the first. Okay. Also sushi and Main. How is that? Yeah, okay. Yeah, that threw me for a loop where you were like, we

Rebecca 1:10:18
have a lot of great seafood and we're right on the coast great ports.

Scott Benner 1:10:22
I assume the food part and that I got but I wasn't sure about sushi. And the most important thing you've said today that people should take away from this, honestly, is listen to the ads. We think that's your best message.

Rebecca 1:10:39
I'm gonna talk for an hour and that's

Scott Benner 1:10:42
no doubt in my conversation. I'm fascinated by your, the trajectory. And you know about it all being around you but not being you.

Unknown Speaker 1:10:52
Me. Yeah.

Rebecca 1:10:53
So now my sister I chat. So my sister says on like her support system, because they really, again, she doesn't have a great support system. You know, this is new to her. She's like, she's like a you're the, the most knowledgeable person I know about diabetes. I'm like, really?

Scott Benner 1:11:09
In trouble. Let me just tell you right now,

Rebecca 1:11:10
I know. Because I was like, obviously, six months or you know, 18 months ago, I knew nothing. So. But she's, you know, she's actually created her own little Facebook group for adults with diabetes in Maine. She has like 20 people or so just because he shook the support system for adults is just not existent. Yeah, don't you she would be a great, I hope she does end up going on at your show. Because she's, she'd be a great person to chat about topple study alone would probably be interesting.

Scott Benner 1:11:36
Yeah. I mean, if she's on the schedule, then she's there. Yeah. And I would like to hear about that study. 100%. But I don't we're not be pimping out her Facebook group trying to what do you try to take people for me? I only have 20 people. 30,000. I can't afford to lose them. Okay. I've just, that's nice. I think that those local groups are really wonderful. Because then

Rebecca 1:11:58
I think they're hoping to actually get together and chat in person.

Scott Benner 1:12:01
That's what I was gonna say. Because they can actually, I mean, like for them, they'd have to get on four wheelers and pickup trucks and probably spent a couple days going to a centralized location, but it's nice to be local to somebody and be actually able to meet them in person. That's wonderful. Yeah, that really is cool. All right. Well, this was good. Rebecca. You did a good job. Yeah. Do you feel like you did a good job?

Speaker 3 1:12:24
I think so. Yeah. You're still nervous? No, no.

Rebecca 1:12:30
Give me more questions.

Scott Benner 1:12:31
You do? You don't want to go. Okay. Now, hold on, Rebecca. Let me get a drink. And then we'll figure something else out. All right. We'll do you. I'm good. No, let's do one more thing. You won't do one more thing? Sure. All right, hold on. I want to go back to the part where you said this is your husband's mother's problem. I love that. That was my favorite part of the podcast so far. So

Unknown Speaker 1:12:59
if you

Scott Benner 1:13:01
are all right, if your daughter gets married to a guy who doesn't understand her diabetes, will you be okay with that?

Rebecca 1:13:09
I think so, as long as he understands like the the highs and lows, like the emergent things that she can't you know, the things that she can't take care of.

Scott Benner 1:13:17
Okay, because I just did an interview with somebody recently. It's not out yet, but it'll be out well before yours is where the person the woman in the relationship needed emergency help. She was basically in bed with a low, but thought, how did this go? Her pump was beeping at her. She thought it was because the cartridge was low or empty. The husband was leaving for work early in the morning, she stops him and says hey, can you please fill out my cartridges and bring it to me, I don't feel like going and doing it. He does that. And when he comes back, he finds her fairly unresponsive. And so he knows enough to hit her with glucagon. But then doesn't do any of the things afterwards that needed to be done. So he like hits her with the glucagon and then goes out into the other part of the house to call his work to be like hey, I'm gonna be late my wife needs help with stuff like it was that low energy did not call nine one didn't really even like go back and sit with her. Just thought of it as I know this sounds horrible to people who understand it better. But keep in mind he really thought he was doing what he was supposed to do. He didn't understand like the bigger impacts that could have happened. And I'm just saying I don't know I think everybody needs to know

Rebecca 1:14:34
Yeah, I think what you definitely need to know what the what could happen like the worst case scenario how to deal with those. Right How to give glucagon what you know, if you're unresponsive stay with me. Come on.

Scott Benner 1:14:47
Let's see now see to you. That seems obvious but you but you said things today that sounded obvious to other people that you didn't know about. And this is my this is my point is that I understand not one wanting people to be up in your business? And but I mean, once you're married, like, I don't know, I think you just have to just be open about it. You know what I mean? Yeah, it just that's what I hope and I, and unless you can get your mother in law to help your husband was something and then I think that's genius, by the way, the power involved, although Do you don't want that right?

Rebecca 1:15:20
Oh god no, no, no, she's a wonderful woman.

Scott Benner 1:15:22
No, oh, no, I'm sorry, I did you misunderstood me. But that was hilarious. What I meant was, What I meant was when your son is 35 years old, you don't want to be in charge of something about his life. Right?

Rebecca 1:15:35
True. But also like, again, you're an adult, like you can you can definitely take care of 90% or even 95% of your diabetes. Like to be I mean, yeah, you got to give people credit. Like most people, most adults with diabetes can take care of their stuff. Like it's really just not even 5%, probably less than 1% of the time you you're going to need help. Help me like emergency help, emergency help, or like a reminder or whatnot. Well,

Scott Benner 1:16:08
let me play devil's advocate from it. Your husband talked about being burned out for a long time. What if you had some of the the burden? Maybe he would not have burned out like that? Is that possible?

Rebecca 1:16:20
I don't Yeah. I don't know. I mean, you really the you know, the dynamic relationship? Do you have to be conscious of that you? If your wife nagged you constantly? Yes. Bye about something? If, if Are you saying she does?

Scott Benner 1:16:36
It's her whole job? Oh, my personality? No, it's not a nag. Nag is the wrong word, constant input on what I'm doing. And what's the difference? I don't know, constant input. Like why you don't want an input this way. Now, if I mentioned something to her, if I'd be like, Hey, why are you doing it like that? She will judge me.

Rebecca 1:16:59
I mean, I can't even count on it. I can count. I mean, probably 10,000 times we're like, Hey, did you take your insulin to take her insulin? Like? Yes, I, but I wasn't like, what's your aim and see what you know, your blood sugar right now? Like, I wasn't sitting over his shoulder while he was poking his finger? You know?

Scott Benner 1:17:14
No, look, I'm not judging. First of all, I'm not judging you. And I'm not saying there's a right way to do it. I'm just asking questions. Yeah,

Rebecca 1:17:20
I just Yeah, I just, I don't know. I feel like you know, when you're, and again, I didn't know what I didn't know. Like,

Scott Benner 1:17:28
yeah, no, I know, you're a much more informed person today than you were a year and a half ago, for sure.

Rebecca 1:17:36
Oh, sure. And actually even says, he's like, well, well, and now he's like, you get it now. And I'm like, Well, I don't know. I don't I don't have diabetes, so I don't fully get it. But caregiving for someone with diabetes, at the level you need to care for a child. I definitely get well, well, that all the numbers mean and all that.

Scott Benner 1:17:54
That's an interesting statement from him. Did he think, why am I going to bother sharing it with somebody who doesn't understand it?

Rebecca 1:18:00
Maybe. And I but I also, I mean, I'm a I'm a sciency. person, I probably would understand if I if you wanted me to like if you wanted to share that much with me. You

Scott Benner 1:18:10
know what blame here is? This is his fault. I gotcha. All right. Yeah. He's I like it. He should have asked Damn it.

Rebecca 1:18:17
Yeah, yeah. You can edit this all out?

Scott Benner 1:18:20
No, what do you hear me? This is fantastic. He's not gonna listen. And your sister's not gonna tell him? She hates him anyway. I mean, not hates him. But

Rebecca 1:18:28
no, he doesn't actually I've sent him a couple episodes about complications and other things. And um, yeah, he had to say does not listen. Are you Catholic? Rebecca? I am not my mother is so maybe I have this like, I liked

Scott Benner 1:18:41
the way your Catholic guilt. Yeah. Like you're like, I could guilt him remotely with a podcast. This would work.

Rebecca 1:18:49
Maybe it wasn't to this one. How many of you are using

Scott Benner 1:18:51
the podcast that guilt people digitally? Is that

Rebecca 1:18:55
true? I have sent him several. Like, or one. There was one with a dad on it that I was like, I wonder if you'd get this? Because he was a stay at home dad for a long time. I was like, This guy's a stay at home dad and you might get him.

Scott Benner 1:19:08
This guy's a freeloader, so no, I'm just kidding. I wasn't there.

Rebecca 1:19:11
anymore. He was a stay at home dad when our kids were little though. Oh, that's

Scott Benner 1:19:14
nice. He seems like a good guy. Yeah, I'd be thrilled to talk to your husband.

Rebecca 1:19:19
Yeah, I don't know if I could give him no way he do it but I got a not a chance doesn't need

Scott Benner 1:19:25
to be him. Any guy like your husband?

Rebecca 1:19:29
Yeah, all his dark ages have diabetes. And all the crazy thing he did is in his 20s and not having the information because there were no CGM. Sure,

Scott Benner 1:19:36
no. I mean, even just the even just the the overall attitude towards diabetes. I'd love to pick through that with somebody who's had it for decades. I think it's interesting. So anyway, all right. Well, Rebecca, you were terrific. Thank you very much. Thank you. I really do appreciate it. Would you hold on for one moment for me?

Unknown Speaker 1:19:54
Yeah, sure. Thank you.

Scott Benner 1:20:03
Well, let's thank Rebecca for coming on the show and sharing her story. And of course, we want to thank the sponsors Dexcom, makers of the Dexcom G seven dexcom.com. Forward slash juice box. And us med us med.com forward slash juicebox or call 888-721-1514. There are links in the show notes of all the audio players you're listening in right now. And at juicebox podcast.com, to us med Dexcom, and all of the sponsors. When you click on those links, you're supporting the production of the show and helping to keep it free and plentiful.

If you have type two or pre diabetes, that type two diabetes Pro Tip series from the Juicebox Podcast is exactly what you're looking for. Do you have a friend or a family member who is struggling to understand their type two and how to manage it? This series is for them. seven episodes to get you on track and up to speed. Episode 860 series intro 864 guilt and shame episode 869 medical team 874 fuelling plan, Episode 880 diabetes technology episode 85 GLP ones metformin and insulin and an episode 889 We talk about movement. This episode is with me and Jenny Smith. Of course you know Jenny is a certified diabetes care and education specialist. She is a registered and licensed dietitian and Jenny has had type one diabetes for over 30 years. Too many people don't understand their type two diabetes. And this series aims to fix that, share it with a friend or get started today. Once there was a time when I just told people if you want a low and stable a one C just listen to the Juicebox Podcast. But as the years went on, and the podcast episodes grew, it became more and more difficult for people to listen to everyone. So I made the diabetes Pro Tip series. This series is with me and Jenny Smith. Jenny is a Certified diabetes Care and Education Specialist. She's also a registered and licensed dietitian and a type one herself for over 30 years and I of course am the father of a child who was diagnosed at age two in 2006. The Pro Tip series begins at episode 210 with an episode called newly diagnosed or starting over and from there all about MDI Pre-Bolus Singh insulin pumping, pumping and nudging variables exercise illness, injury surgeries glucagon long term health bumping and nudging how to explain type one to your family. Postpartum honeymoon transitioning all about insulin Temp Basal. These are all different episodes setting your Basal insulin, fat and protein pregnancy, the glycemic index and load and so much more like female hormones and weight loss. Head now to juicebox podcast.com. Go up in the menu at the top and click on diabetes pro tip. Or if you're in the private Facebook group, there's a list of these episodes right in the feature tab. Find out how I help keep my daughter's a one C between five two and six two for the last 10 years without diet restrictions juicebox podcast.com Start listening today. It's absolutely free.

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