Scott Benner 8/15/24 Scott Benner 8/15/24

#1281 Whole Lotta Rosie

Emily is the mother of a 14 year old child with type one diabetes.

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Scott Benner 0:00
Hello friends and welcome to another episode of The juicebox Podcast.

Today, I'll be speaking with Emily. She's the mother of a 14 year old child who has type one diabetes. There's some other autoimmune stuff throughout her family, and let's see what else. So she's an expat living in the United Kingdom. Her daughter has chronic digestive issues as well as type one, and today we're going to talk to her all about 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. If you have type one diabetes, or are the caregiver of someone with type one and your US resident, I'm asking you, with much love, to go to T 1d exchange.org/juice, box, join the registry, complete the survey you're helping with type one diabetes research. T 1d exchange.org/juice, box. Go complete that survey. Please. When you use the link, hungry root.com/juice, box, you'll save 40% off of your first order. All the details are at the top of the link. Hungry root.com/juice box, and check out the private Facebook group, juice box podcast, type one diabetes. You want to meet people who live with diabetes. You're going to meet a lot of them there because we have 52,000 active members. Us. Med is sponsoring this episode of The juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well. Us, med.com/juice, box, or call 888-721-1514, use the link or the number. Get your free benefits check and get started today with us. Med, this episode of the juice box podcast is sponsored by the ever since CGM, ever since is going to let you break away from some of the CGM norms you may be accustomed to. No more weekly or bi weekly hassles of sensor changes. Never again will you be able to accidentally bump your sensor off. You won't have to carry around CGM supplies and worrying about your adhesive lasting. Well, that's the thing of the past ever since cgm.com/juice box. This show is sponsored today by the glucagon that my daughter carries. G vo hypo pen. Find out more at gvoke glucagon.com forward slash juice box.

Emily 2:36
Hi. My name is Emily, and I am the parent of a 14 year old girl with type one diabetes.

Scott Benner 2:43
Your daughter is 14. Emily, how old are you

Unknown Speaker 2:47
47

Scott Benner 2:50
Do you really not know, or you don't want to say, I, yeah,

Emily 2:53
no, no, I, I'm pretty sure I'm 47 you know, you know, like after 45 I feel like you kind of forget.

Scott Benner 2:59
I haven't said this in a while, but there's been twice in my life that I've lived an entire calendar year of my life believing that I was a different age than I was. See, I'm

Emily 3:08
glad I'm not the only one.

Scott Benner 3:11
I just might one day, I said to my wife, like, I can't I can't believe I'm gonna be, what was it 49 can't believe I'm gonna be 49 on my birthday. And she goes, Are you kidding me? And I was like, what? And she goes, You are 49 and I was like, No, I'm not. And I stopped. I was like, 1970 Oh, my God, a whole year of my life happened to me twice. You're 47 she's 14. Married. Any other kids, anything like that?

Emily 3:32
Yeah, married. And I have a 24 year old and a 20 and a 21 year old. Oh,

Scott Benner 3:38
Emily, there's the story, right? There is the 14 year old with a second husband. Or did you guys go to a wedding?

Emily 3:44
No, all, the same, all, all, same, same. What happened? What happened that I have a 24 year old?

Scott Benner 3:53
No, what happened? I get the 24 year old. I'm okay with that. Oh, the seven years between the let, like, seriously, did you have sex by mistake? Like, what happened?

Emily 4:03
Well, okay, so we got, I got pregnant, really young, with our first. And then, you know, after, if you want one, you think, well, let's have another one, right? And so then we had our second. And then I, my husband, went to grad school, and then I went to grad school, and I don't know, we always wanted another one. And then we had Rosie gotcha years later. All

Scott Benner 4:31
right, so I gotcha. So you guys took care. You guys had family first, maybe not on purpose.

Emily 4:38
Yeah, it was a surprise. Yeah,

Scott Benner 4:40
I have a baby like that. And then you took care of yourselves, put yourself in the position you wanted to be in, and then went back again and said, Okay, build a family, build a life. Let's have that, uh, that last baby we're thinking about. Yeah, oh, that's for See, that's a very wholesome story.

Emily 4:56
Yeah, yeah. I mean, I did tell you it's kind of boring, but, yeah.

Scott Benner 4:59
I thought maybe you guys, like, got bored for seven years, then one day, went to a wedding, and the next thing you know, you had a baby. Because that's what usually happens. Little drinky. Little drinky on a Saturday night, feel young for a minute. You know what I mean? I

Emily 5:10
mean my my second kid was pretty, pretty challenging. I felt like I needed a lot of I needed a lot of time in between. And there was a point where they so they're just so, you know, they're non binary, and I sorry, and they use the for their trans FEM, and they, they use they, them as pronouns. Okay, that this is my 21 year old. And sometimes I mix up, though, if I go back, because when they were younger, I think of them as a boy. So if I mess up, it's just because of that. But anyway, when my 21 year old was younger, I don't know, eight years old, and I was, I was kind of working part time at but mostly like staying at home with them, and it was just so hard. And I thought, What could be easier than raising this child? And so I put them in daycare and went to grad school because I school because I actually thought that would

Scott Benner 6:06
be easier. Do they know that about themselves as a little kid?

Emily 6:09
Oh yeah, like, yeah. They were like, yeah. They're just really funny person. And they'll say, Yeah, I was a total asshole.

Scott Benner 6:18
Is there any auto immune with you, your husband or your other two kids.

Emily 6:21
I suspect that my 24 year old has, or I hope that he doesn't have Crohn's or celiac, but I it's possible he's had a lot of GI issues. And you know, you can only tell your 24 year old so many times that they should probably get an official celiac test, but they just took out gluten and that they're like, look, it works. I feel better. So I don't know, I definitely have some arthritis issues, but it, I think it's probably osteoarthritis. My mom has some pretty severe arthritis issues. Also, she's always been told it's osteoarthritis, but it does both of our hers is quite severe now, and both of our issues tend to be kind of autoimmune in nature, likely just called osteoarthritis rather than rheumatoid

Scott Benner 7:13
and Rosie just type one or anything else. If you take insulin or so final ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G VO, kypo pen. My daughter carries G VO, K hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that, I trust low blood sugar. Emergencies can happen unexpectedly and they demand quick action. Luckily, GEVO kypo pen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use GVO kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulin Oma. Visit, gvoke, glucagon, com, slash, risk for safety information, yeah.

Emily 8:29
I mean, she definitely has some kind of GI issues going on as well, but she's always negative for celiac and doesn't seem to have anything it. I mean, she doesn't seem to present with anything like Crohn's or colitis or anything.

Scott Benner 8:45
Are those issues just since the diabetes? No,

Emily 8:48
she's always kind of had kind of chronic constipation, which I know that seems to be kind of a common theme with a lot of folks with type one, but that, I you know, we've addressed it, but it's, it's still there. I mean, even today. So she, she missed school this morning because of a stomach ache. And, you know, I don't, I don't really, I can't really explain it, you know, we've been to the I've been to the GP. We've been to, I've talked to her consultant about it quite a bit.

Scott Benner 9:16
I have an easy thing for you to try.

Emily 9:19
So, yes, okay, I

Scott Benner 9:21
don't know if you've heard the episode called Arden supplements.

Emily 9:26
Oh, yes, yeah. Has

Unknown Speaker 9:28
she tried? I

Emily 9:28
just haven't, yeah, I just haven't done. I mean, we do a probiotic. I'm trying to remember the one that you Yes. I will go back and listen to that.

Scott Benner 9:37
Yeah, it's 767, but the the quick, easy answer is just to try mixing a digestive enzyme with her meals. Oh, yes, and see, and see if that whole thing doesn't kind of work itself out. Yeah,

Emily 9:51
we'll definitely give it a go. I mean, I feel like we've kind of, we've done the whole macro goal route. And,

Scott Benner 9:57
yeah, it's a low cost. Yeah. Thing, it's there's no skin off your ass to pop the little tablet in your mouth before you eat for a week, just to see how it goes. And, you know, I try to remind people as much as I can, like your pancreas doesn't just make insulin. It does other things and has a lot to do with digestion. A lot of people with type one seem to have digestion issues. Yeah,

Emily 10:18
yeah. I think, yeah, that's a good reminder. Thank you. I will give that a go, and like,

Scott Benner 10:23
I have a question before we move forward, there's a rock song. I think it's an AC DC song with Rosie in the title. And my brain can't think of it, and it won't leave me alone about it. Do you know what

Emily 10:35
it is? Oh, you don't know. No, sorry. I mean, I probably knew all the songs in high school. I got it. I feel like my brain doesn't swear that anymore.

Scott Benner 10:45
Whole lot of Rosie, oh, okay, I don't know what it's about. I'm not making any inferences about your kid. I'm just it got you said, Rosie, and I'm like, oh, there's a song. And I could feel the isn't that strange. I could feel the beat of the song, but I couldn't hear the music, and it couldn't and now, just now, when I thought, I think it's a CDC, then I was able to google it real quick. Anyway. Now I was gonna think about the whole goddamn hour if I didn't figure it out. So I apologize. Now

Emily 11:11
I'm gonna look for it for her. Then she kind of likes the songs from my high school, 70s. Yeah, no, wait, that's not 70s, right? Wouldn't that be later?

Scott Benner 11:22
Wait, a CDC is not maybe it would be this song, 77 okay, it was on the, all right, on the, Let There Be Rock Album in 1977 okay, you're older than you think you are. Emily,

Emily 11:33
it's true, yeah. I mean, it was born in 77 so wasn't listening to a CDC then? But, yeah,

Scott Benner 11:40
sure, but we all were, I mean, honestly, no, in my 20s, like classic rock radio was huge, so you're about you're a couple years behind me, maybe not. Well, I don't know, it's not worth talking about, because that's not why you're here. Mostly, why are you here? What made you want to come on? Well, a

Emily 11:58
friend had been on, and she had said, oh, you should do it and and we, I think you, maybe you were looking for guests on the Facebook group. And I've always thought, Well, I'm not quite sure what I what I could talk about, because you do interview a lot of, I don't know, white middle class moms. I sent an email and thought I could talk about unschooling. So Rosie, she now actually goes to school, but she never went. She did not go to school until age 14. And we are Americans living in the UK, and have chosen to stay, partially because of health care here. So I don't know if that's interesting to

Scott Benner 12:36
we're gonna find out. Listen. Also very possible. We call this episode, white, middle class mom, so you said at the beginning, like, I'm gonna be boring. I'll put a boring title with it. That'll be fantastic. It

Emily 12:47
is, isn't it? Yeah.

Scott Benner 12:49
So how do you end up in in England

Emily 12:51
first? Well, we so we were living in Portland, Oregon, and mostly raised our kids there, and we had briefly lived overseas before. So we lived in Japan briefly, and thought it was a great experience for us and a great experience for our kids, and we were open to the idea of going abroad again. And my husband was able to just kind of get a work transfer over here. And so we came over for kind of this two year experiment, and eight years later, here we are,

Scott Benner 13:24
eight years you've been there now, yeah, you have no accent at all,

Unknown Speaker 13:30
no British accent, yeah,

Scott Benner 13:31
but you don't even like a touch of it. Like, I went on vacation in the south once my father came home, like, you know, like he was on he Hall, so like

Emily 13:39
Southern accent, yeah, it does come out every once. Like, I think there's certain words that I say that on even on accident here. Like, if I'm talking with people and I say tomato, I you know, which is just so ridiculous. But you know, you hear, you hear words the British way, all the time. Then you start to say them. But yeah, I don't think I do.

Scott Benner 13:59
Would you say aluminum, or would you say aluminum? Oh,

Emily 14:04
aluminum. Okay,

Scott Benner 14:05
all right, yeah, yeah. I

Emily 14:06
mean even Rosie. I mean she's been here since she was six, and she doesn't, I don't think she has a British accent at all, although, when we go home to Portland, you know, friends and family will say, Oh, she's got an accent, but she definitely doesn't. I

Scott Benner 14:18
gotcha. Okay, I'm sorry you used the term about school that made it feel like I actually felt like you were making a hemp purse while you were using that term. It sound like such a hippie thing, but what is it?

Emily 14:28
I know it's so hippy dippy. Yeah, yeah, it does, yeah. So unschooling. Unschooling

Scott Benner 14:34
is that like, when what's her name divorced the kid from Coldplay? Did they uncouple?

Unknown Speaker 14:41
Oh, remember that who's,

Scott Benner 14:43
who's the, who's the lady that sells you the egg for your vagina. Oh, okay, and she was married to the Coldplay boy, right? I can't talk about, by the way. I don't want to go down this rabbit hole again, Emily, but I don't like Coldplay, and I. Had that in front of my son. I said they only have two or three good songs. And he's like, my son goes, Look, I'm not a Coldplay fan. He goes, but they have it. They have more good songs than that. And then he made me go through them in the car. And they did have, I'm gonna just say they did have about eight songs that I enjoyed. I just don't like the Coldplay boy. He gives me a weird he gives me a weird, douchey vibe. Just yeah, you know what? I mean, yeah, yeah. Anyway, when they got divorced, they told people they were consciously uncoupling.

Unknown Speaker 15:28
Oh, yeah, that that

Scott Benner 15:30
so with that embarrassment in your mind, tell me again, what it's called, unschooling. Unschooling.

Unknown Speaker 15:36
How does that happen?

Emily 15:37
Yeah, I mean unschooling, it's definitely kind of more of a I guess it is used here in the UK, but it's not necessarily on educating, right, or, or it's not anti school or anti education. I think the term was started by folks that maybe didn't want to necessarily home school. They didn't want say they were, they were going to not send their kids to school, right? But maybe they didn't want to say, Sit at the kitchen table and just, do you know, books in a curriculum the whole time, right? Yeah. I mean, it's again, it's not anti school here, I would say here. People mostly say home educate, I guess, which is kind of, I think of that as homeschooling too. But, yeah, I don't know if I'm explaining, no,

Scott Benner 16:20
I haven't Emily, what? How does it? So first of all, you've got a 2421 and a 14. Does a 24 year old go to regular school, K through 12? So

Emily 16:29
my 24 year old went to so he went to school when he was younger up until about first grade, and then we went to Japan. And so that time I had just the two kids, and I went to his teacher in first grade, and I said, Look, we're going to go to Japan for three months, and it's going to miss all this school. I'm really worried. Could you give me the, you know, the curriculum, and we'll follow along? And I had visions of, you know, we're going to, maybe at the time, you know, Skype, right, zoom, or anything, but maybe we can Skype with the class, and we'll follow along with this curriculum. And you know, this teacher was so nice and printed out, you know, this huge stack of worksheets for us to do. And so, you know, I dragged this all the way to Japan with us, and I remember one of the first week days we were there, I said to my son, you know, it looks like the class is doing they're making this bird habitat out of con balls. So we, you know, we should do that? Well, we can take some pictures, we can send it to your teacher. And my son was like, I don't want to make that. Why? Why would I make that? Why can't we just go to the zoo? Why would we make this bird habitat out of cotton balls? And I thought, actually, you're right. I don't want to make this either. And then I just started taking my kids all over. I mean, you know, how lucky were we? I feel like, very privileged that we got this opportunity. We went to every museum in Tokyo. We traveled all over, you know, as much as we could in those three months around Japan, he was reading everywhere. So he was constantly had a book in his hand on the trains in Tokyo. The train system is color coded and numbered. And he would figure out, you know, if we were at, say, like, you know, the yellow station. I mean, does have a name, but say, like yellow 32 or whatever. And we were going to go to train station, yellow 17. How many stops do we have? So he and he would figure that out. And he so he was constantly doing math, right? And then I could send him to the store at age seven, you know, with Japanese currency, and he would go and buy the milk for us. And he knew that how much changed he should get. So he, you know, he was learning just from living, right? I think my younger one was maybe about four, my kid who's 21 now and then, when we got back to the US, you know, it was summer, and then he was going to start in the next year, or maybe even second grade, whatever it was, anyways, young primary school, right? And so I went to his the next teacher that he was supposed to go into, I think it was third grade. And so I went to it then the third grade teacher, and I said he missed the, you know, these three months of school, and I had this curriculum, but I'm really sorry we didn't do it. So I feel like he's probably going to be behind. I'm really sorry. You know she, of course, you know she gets like, a very serious look on her face and like, oh, okay, did

Scott Benner 19:31
I'm sorry. You can't come back until you give us a cotton ball birdhouse,

Emily 19:36
yeah, yeah. Well, that's right, yeah, where's that cotton ball birdhouse?

Scott Benner 19:39
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Emily 22:29
So then she stopped me several weeks later, and she said, You know, I don't know what you did, but he's actually way ahead. And that's when I realized that, oh yeah, we could just kind of do our own thing. So that kid went through, so he finished around fifth grade, and then started kind of home educating on schooling with us. And then my, my kid, who's 21 got through about, I don't know, the middle of the year of first grade, and I realized, I don't think this kid is cut out for a classroom. I mean, they weren't the kid that was like running to the window when a bus would drive by or anything, but they would just sit at their desk and take a nap the whole time. And so I felt like we needed something else for my, my middle, now, my middle kid, because at the time, they were coming home after school and saying, Well, you know, I'm a stupid one, and everyone else is smart. And I thought, you know, you have to like yourself that minimum, right? You have to at least believe in yourself, or the learning is not going to happen at all. So we kind of started doing our own thing and taking lots of classes. Support. Linen has a really nice, I say, home ed or unschooling community. So lots of folks that are kids don't go to school, but they take classes in the community or extracurricular activities anyway, that's what we did. And then Rosie came along, and at that point, that's just six we moved over. Yeah, we just kept doing it. And then when we moved to London, I mean, it was amazing. She's been to, probably been to, you know, nearly every Museum in London with peers in some kind of home Ed shop, in a museum or over a historical site.

Scott Benner 24:07
I have a question. So, I mean, you have a 24 year old, right? Did they go to college?

Emily 24:12
Yeah, so what they did is, they're really into music, and so when we moved over here, trying to remember the track, they just they did. They wanted to do music production, and they were already kind of dabbling in it on their own, or, sorry, on his own. And so he, let's see, I think he took the S, A, T or no, sorry, he took the US, G, D early, because I think he was about 16 or 17 at the time, and a lot of home, home schoolers around schoolers, in the US use the US GED as a where they were. I'm not quite sure if they're still using it, but at the time, the US GED was sometimes a good way to access, say, like Community College, yeah, or, you know, adult classes that you want to take. And so he took the US GED, and then you. Used to that to apply here in the UK to a what's called the B tech level three in music production. And then he took that diploma, or the B Tech degree, and applied to university here for music engineering, although he did not finish. But that is because he he's in a band, and the band, well, won. The band was signed to a label at that time, and then also, he was already getting paid to do music engineering, so he was kind of, you know, already getting paid for something that he was learning in university. And felt like, you know, he felt like it wasn't really worth it to keep going at the time, you know, of course, I don't know. I think it was maybe kind of an old school idea of mine, like that. You just finished, get this piece of paper, right? This piece of paper is really important that says you've done this. But I think he was right. He didn't really need it, and he hasn't gone back

Scott Benner 25:57
that makes a living, takes care of himself, is doing well? Like, how would you, like, how would you hold up his current success against other 24 year olds?

Emily 26:06
I mean, probably fairly equivalent. I mean, you know, he's still, like, I mean, it's hard to make it in music, right? So maybe I would still call him a dependent in some ways, but, but yeah, he's doing, he's doing, all right. I mean, he's, we just want them to be happy. And, you know, interesting,

Scott Benner 26:24
yeah, Emily, I'm not, first of all, I'm not. I'm gonna ask a lot of questions. I'm not coming down on your position. I'm really interested, yeah, but, I mean, I think I had a kid when I was 24 or you did, yeah, you were on your way to another one, yeah? And then you take a very traditional route, you and your husband, and I'm guessing you've got two advanced degrees and you're living overseas. You guys are doing okay, yeah, yeah. So if you were broke, do you think you'd be like, hey, go to school, figure out something, because you got to get out there and make money. Do you think that this is partly a thing that they're able to do because you're able to fortify it?

Emily 27:03
Yeah, I do think that there's a whole lot of privilege in what we've been able to do, for sure, okay, but I don't necessarily think that a degree is for everyone. I mean, my 21 year old, you know, they were, they work in a pub right now, almost full time, and they're quite happy working in the pub, and they're not quite sure what they want to do. And I think that's okay. I don't, you know, I don't know if they will end up going to university or maybe doing something in the arts or, you know, I think it just depends on the person.

Scott Benner 27:34
I'm flexed by this I have a 20 My son just turned 24 like, two weeks ago, and my daughter's gonna turn 20, right? So I'm in your boat, minus the hey, let's have one more. I'm always like, like, running through this in my head, because I was incredibly broke growing up. My wife was broke growing up. We're more comfortable now. There's part of you that's like, I can't leave you an amount of money to make sure you're okay. Like, you're going to have to take care of yourself. Like, you know what I mean, like, how and the unknown of like, what does that turn into? Like, what if the system just demands what it demands, and whether it's right or wrong? Because I hear your story, and I think this is fantastic. Like, imagine raising a kid for all those years, taking them out, doing cultural things, letting them learn math and real world experiences like all this stuff sounds amazing. Your kids are probably amazingly, like, rich and, you know, in knowledge and experience and all that stuff. But what happens on that day when, like, so they meet somebody, and that somebody's like, I want a baby in a house, and I want a car, and I want the car to be safe, and I don't want to eat crappy food. And let's go right now. You know what I mean? And like, yeah, and you're like, I don't have a degree, I can't get that job, I don't know how to make that much money. Like, you know? Like, I'm happy. And you know what I mean? Like, when does that? That's my worry for me. Like, when does that worry? When does that I'm happy? Turn into I can't take care of myself that.

Emily 29:01
Do you think about that? Well, I would say I've never been anti education. I think, like, I think that my oldest kid is really academic. I think if he wanted to go, and if it was going to be more lucrative for him in the music field to go and do some kind of music to go, like, finish the music engineering degree, then, yeah, he should do that. But I don't know if that is necessarily for his industry what he wants to do. I don't know if a degree is really necessary. If he had said, Look, I want to be a pharmacist or whatever, of course, you know. But I think as long as you know, I mean, he's on the track to supporting

Scott Benner 29:42
himself. I'm talking about, like, when, again, I'm not talking about your kid. I just, you're just a good person to have this conversation with. Like, like, I'm talking about the difference between making enough to get by. You know what? I mean? Like, like, Hey, I got a job. I do. Okay? I make $50,000 a year. I pay my bills. I don't have a. Lot extra, but I have my my house is clean. You know what I mean? Like, I'm okay. I can cover my my nut, etc. The difference between that and when the person looks you in the face one day and says, I want the kids to have a yard to run around in, and it's on and it's on you, and you're like, I don't know how to make that happen. I can't believe I'm saying this, because I don't believe in this, but I do believe in it. I believe in what the world wants, not what might be right for you or another person. Like, what if you have nothing to fall back on? Like, you know, even just that, um, the idea of having a network of other people who went to college, who might be well employed, that you can call up and go, Hey, do you remember me, like, you got anything open there, like that kind of thing, like that. That disappears. You don't build that, that network, right?

Emily 30:48
Maybe you have a different network. I mean, if you Yeah, yeah. I mean, I guess there are plenty of folks that went through high school, like us, High School, for example, are here that, like, the GCSE track, which is somewhat similar, yeah, and then didn't go on to university, and they find their way. I don't know if, like, a bachelor's degree, you know, is right for everyone, and that's fine. I mean, in the US, it's quite expensive.

Scott Benner 31:18
Oh, I don't think it is. I don't think it's I mean, honestly, I don't know that it's necessary for anyone. It's necessary if you want to, if you have the expectation of, I mean, a single family home, or, you know, a car that doesn't break all the time, or $5 aside when you need it, or when you get old, and it costs $3,000 a month to stay alive, like, and you haven't worked in 15 years. Like, that's the kind of stuff. Like, it's just interesting. Like, your mind and my mind just we worry about different things. Like, because I guarantee you, you and I agree about all the fundamentals of what you've just

Emily 31:55
said about people and happiness, etc. Yeah, I don't know. I feel like I do know quite a few folks that have, you know, degrees, or even advanced degrees, that aren't necessarily like doing well. I mean, they have over well, I mean, they're doing okay, but you know that maybe they could, you know, have not done that track and still been this, made out the same, I don't know, or maybe have, you know, if they're in the US had less, yeah, it's

Scott Benner 32:22
the I don't college debt to worry about, right? It's so the part where I'm jealous of you is that it's the it's in the I don't know, like you're willing to say I don't know, and it doesn't matter, keep doing the thing you like. And I wonder if I'm not a person who says I don't know, but you better make sure you're going to be okay as best you can, even if it doesn't work out. These are the steps you should take to ensure as much as possible. This kind of, like,

Emily 32:50
comfort, yeah? Well, I mean, I was definitely there when my kid was like, I, I don't, I don't want to finish this bachelor's program because I'm already getting paid what they're teaching me. And this is kind of, you know, why would I do this, right? And at the time, you know, like I said, I definitely, and my husband as well, both of us were like, dude, just get the piece of paper right. Get this piece of paper. Since you have a master's degree, you're almost done, right? And, but now I understand. I mean, he would have missed out on all these music opportunities. So, you know, yeah, you're right. I don't, I don't know. I mean, I think, I think he's going to be okay. I'm not worried about,

Scott Benner 33:25
I wonder how much of the difference is just that you're, you grew up on the West Coast, right? Like the upper, the upper Northwest check, and I grew up on the east coast, where it's very like, it is quite culturally different. Yeah, it's like, go, go, go, win, kill, like, or die, you know what I mean? And right? And you, you kind of were like, hey, it's cool. We're gonna make like, Yo, we'll probably make heroin legal, like, like that, by the way, I think they took that back. Do you keep or, yeah, did you do you keep up with home? I think Oregon was like, Hey, we shouldn't have done that. And I think they went backwards on it.

Emily 34:01
Oh, did they? I don't know. I mean, I do try to keep up. I mean, I still vote out of Oregon, but not. I don't think I can vote in that. I don't know. In those measures, I can't, not quite sure, Oregon

Scott Benner 34:13
legislators vote to recriminalize low level drug possession.

Unknown Speaker 34:19
Oh, wow, wow. Wow.

Scott Benner 34:20
They were like, that didn't work. Let's try. It's too bad.

Emily 34:23
I feel like that works in Spain and Portugal. I mean, I yeah, I don't know. I mean, don't quote me there, please. I don't know anything. I feel like it works in other parts of the world, and maybe it could work. But, yeah, I

Scott Benner 34:36
just heard, I just heard it on the news the other day. I was like, they were like, they're going backwards on some of that stuff that they did, because it wasn't that long ago, right? They decriminalized, like most drugs, I think.

Emily 34:47
And I think so I didn't realize they backtracked that. But, yeah, I keep up as much as I can interesting stuff,

Scott Benner 34:53
so you have this great experience. Your children are growing up well, you're like, hell, let's just do it again. You're not the kind of. You're not looking to build up whatever, the whatever the British version of a cotton ball house is. So you're like, I'm not doing this. And then your daughter is is going along fine. How old is she when she's diagnosed? Then,

Emily 35:13
uh, yeah, so she was he, we were here when she's diagnosed. She was eight. Eight.

Scott Benner 35:19
Okay, like six years ago, out of nowhere, took you by surprise, I imagine,

Emily 35:25
yeah, I mean, I was surprised. I My mom has always shared this story that her her told her this. So this story was her grandmother would tell her when she was a child, was that the grandmother had moved from eastern Canada to California as a young woman with a sister that had diabetes, and the sister would have been very young, like late teens, early 20s, maybe, and that would have been at the turn of the century, and they had moved believing there was a cure for diabetes in California. And obviously the sister, she didn't make it right. And so my mom had always kind of talked about diabetes when I was a kid. I have one sister, neither one of us had type one, but I kind of knew about it, like if we were thirsty, for example. But, you know, just randomly, you know, my mom would be like, Oh, you too. Appetite in the family, right? But it would have been way back there and it didn't pop up again. I think my mom has a first cousin as well, but, you know, I didn't have any cousins with it or anything. So it was quite removed. When we lived in Portland for 10 years, I had a neighbor who her kid had befriended my kids, and her kid, at the time, was five and and this was even before Rosie was born. So her kid just liked being at our house. And I think she she had moved back to the neighborhood to care for her parents, and her kid had been diagnosed at age three. I think I was kind of the first friend that she met that when she said, you know, my kid has type one. Could he come over and play and, you know, here's all these things you need to know. Is that okay? And I was kind of the first person, maybe because I was a healthcare professional and was somewhat familiar with type one and interested, right? I said, Yeah, sure, he can come over and her kid had, I mean, he had sleepovers at our house. She when she went on her honeymoon, I I gave her kid mixed insulin and a syringe, you know, I checked his blood sugar in the middle of the night. I remember when she got Dexcom, and I remember, you know how excited she was, and her showing me Look, I can see, you know, his blood sugar on my phone. And, you know, I didn't quite at the time understand the level of excitement. I mean, obviously, now I get it. Yeah, you get it now. But I had all this experience with type one and then throw Z, obviously, you don't want it to be that, right? I mean, I thought, I thought that she might have it just because she was so thirsty and she was, it looked like her muscles were wasting away, right? And I bought a test kit and it and I went in one night, and I thought, I'm just gonna and I knew, and she wasn't. So she was pretty scared of needles, right? So, and there's no way she would have let me poke her finger. So I tried to go in in the middle of the night to like poker toe. And that didn't that did not work. So then the next morning, told my husband, look, I think, I think she might have type one, and, you know, he said, and he was quite familiar with my older kid's friend that had, you know, kind of grown up in the neighborhood with them, he said. Then he started worrying about it, too. And he's like, you know, I'm really worried about this. I think you might be right. And so I knew she wouldn't again, let me poke her finger. I didn't want to hold her down. I knew if this was type one, I needed to go into this with her 100% trusting me, right? And so I called the GP, and I just said, Look, I, you know, I think this is what's going on. Could we come in? And miraculously, we got a same day appointment, which is fairly rare here in the UK, although it does happen. And so I brought the test kit in, and I, you know, just told the GP, look, I think she might have this, could you please tell her? And it just explained that we have to poke her finger, because I wanted the GP to say it rather than me, yeah. And unfortunately, he, you know, he wasn't the best. And there are some great GPS out there in the UK. So I hope this doesn't, you know, give everybody, anybody a bad impression of the NHS, because it is, it is it is really amazing. I had a really horrible experience with it when she was diagnosed. But it is an amazing, you know, the energy test is incredible, but so the G, the GP, was like, No, we don't, we don't need to do that. And I, you know, I said, Well, are you sure? Because I brought this test kit. Here's all her symptoms. And I think. He probably saw in his practice. I mean, he probably saw a lot of folks with type two. He probably, you know, maybe didn't even ever see a kid with type one. I have no idea, but he just didn't really know about it. And well, first I said, Look, could you just then, could you at least dip her urine for me? Because then I'll know. And so he agreed to dip her urine, but then he did it incorrectly. And he said, Well, it does look like there's sugar in it, but, or glucose in it, but that could be an infection. And then I kind of knew that, you know that, that probably, he probably wasn't right. And so he said, Well, I'll order a blood test, right? How about because I did kind of press them, no, we need to do more. This is not, you know, not. And he said, Well, order a blood test. And then I thought it would be like in the US. I didn't have a lot of experience with the NHS at that time, right? So I just assumed the blood test would be, you know, the same day, maybe next door, maybe in the clinic, but the blood test was like next week sometime, and I think it was a Thursday or Friday, so it was, you know, kind of the end of the week, and blood test was in a totally different location. And so I just walked Rosie home from the GP, and I said, look, the GP wants to do this blood test in your arm here, I just want to poke your finger. You can do mine first. And could we just, you know, would you be willing to do that? And I convinced her, so she poked my finger first, and it was normal. And then we did hers, and it just said, Hi. So then, you know, we washed her hands. We did it again, and I again. I don't know if you want to the rest of my my story. It wasn't, it wasn't great.

Scott Benner 41:46
Well, I want to hear about, I gotta tell you that before you make me sad with this. I've so far been the saddest when you told me that your distant relatives went to California looking for I

Emily 41:58
know. Can you believe it? So sad. I know it's horrifying, isn't it? What it like? What a horrible death, right?

Scott Benner 42:06
Well, it just like, we're gonna try, I'm assuming, like horseback or wagon or something like that. Like you don't need my railroad. Yeah, you're making that trip thinking maybe there's a medical advancement there, that's not here, and you don't even make it to find out. And now you've relocated your whole family, and along the way, your daughter died.

Emily 42:27
Like I don't so the story that I know, and so my mom and my sister and I would like to go back to eastern Canada, where this grandmother had come from, and just maybe do some, I don't know, spend some time, and maybe, I think there might be some graves there that we could check out. I'm not sure. But my mom has, you know, she's really into genealogy, and she so, from her understanding, is it was just the two sisters. So the sisters left the parents, basically, and as young women, and, you know, again, probably went by train to California. Yeah, I think when my mom went back to look for the some kind of death record, it wasn't in California, so she's not quite sure, but that was the story that the grandmother had told her,

Scott Benner 43:17
right? Still, it's just, I don't, the whole i It's, it's the desperation of it that made me sad.

Emily 43:23
I know, yeah, I know, yeah. It's horrifying, isn't it was,

Scott Benner 43:26
yeah, that's what it was. Okay. So when Rosie's diagnosed, do you have a little bit of a collapse personally? What were you about to tell me?

Emily 43:35
Well, I didn't want it. I mean, I knew that it couldn't really be anything else. I mean, kids don't really tend to get pancreatic cancer, right, somewhat of a clamp collapse. But also, after all that experience in Portland with my friend and watching her raise her kid, and you know, he's such a lovely person, and I felt like I at least I knew we'd be okay. So I was sad for Rosie, but I felt like, you know, we'll be okay, yeah. So we've gone to the GP, you know, wasn't, wasn't very helpful, but now I've got this finger poke that I know she has type one, but I still didn't know quite what to do, because I hadn't had a lot of experience with the NHS yet. So I called the GP back, and I said, Look, you know, she definitely this has to be type one. I don't know what else it could be. Could you just tell me who in Greater London handles pediatric diabetes? And he's like, Why? Why do you think you need to go to the hospital? Why we can just, How about I'll order a specialist? Was like, I I don't have insulin in my home. What it you know? What if she goes into DKA? What you know? I I'm going to the hospital. I just need you to tell me which one to go to. I'm going. I'm telling so

Scott Benner 44:51
a few minutes ago, you thought we didn't need to check her finger, so I'm not sure. Yeah, yeah. What you know exactly? Yeah.

Emily 44:57
Finally, he gave me a couple. Options. I called a friend. She said, you know, go, go to this one, right? We went to this hospital, and I was just happy that they gave her insulin. But they, they were so weird about about the fact that we home educate, and that became the real focus of our of our visit.

Scott Benner 45:16
How did that even come up? You know? Because they just ask, like, Well, where

Emily 45:19
do you, where do you go to school? And that day, I mean, our plan for that day was, we were going to go to a nature study group in Kew Gardens with a bunch of friends. So it's not like, you know, I'm keeping my home school kid locked, you know, in the basement or something. You know, we're supposed to go to this learning group. And I realized, you know, I got this GP appointment, so we skipped it. We, you know, did that went to the GP that day. Now we've presented at the hospital. And then, you know, of course, they ask all these questions at some point, like when you go to school, and I said, well, she's home educated. And then they said, well, oh, we need to, we need to notify the local authority that you home educate. And I knew why the law? Yeah, well, exactly, they were wrong, so the law is on my side. And I said, Look, actually, you, you don't have my permission to notify the local authority, and could we just focus on the diabetes? So they asked a lot of questions, which was quite frustrating, because I felt like, I've, I've literally just explained ketoacidosis to the GP. I feel like I could probably teach ks two or ks plus School, which is at a school level here,

Scott Benner 46:29
yeah. And now it's like, now the focus went from your kid has diabetes too, at home, what's wrong with you? Yeah, no.

Emily 46:37
So I had to call, I had to call my other one the other kids at home, which they were teens at the time. And I just said, Look, you know, I'm really sorry. She does have type one, and we're going to be in the hospital for a while, and also social services might come to the door. Could you just not, could you not swear at them and just tell them where I'm at? Right? Anyway, social services do not want to see us. And, no,

Scott Benner 47:00
that was a miss. That was a miss, that was a misunderstanding at the hospital side. Well,

Emily 47:04
they messed up. So they did later. They sent me a formal apology, and they apologize. And they were, you know, they were really worried because they had violated our privacy, our information, right? They they should not have shared our information without my permission. That is the law. Like they did

Scott Benner 47:20
it anyway. When you said, Don't do that,

Emily 47:21
yeah, but I mean, at the time, it was pre pandemic, you know, it was pre covid, right? And home homeschooling or home education, it wasn't very common here at the time. And so I think, I think, to their credit, the nurse that saw us had just taken some kind of like, safeguarding, continuing ed, course, where, you know, home educators might be a red flag, right? Obviously, obviously, we weren't. I mean, I'm there to get help, but

Scott Benner 47:51
she thought you got she caught you guys building a bomb in your house or something like, yeah, exactly. She's like, this lady's running a quote. I know it for sure, yeah, for sure. Not crazy, by the way, what, you know, it

Emily 48:04
was a bit weird, and especially because I gone from the GP and again, you know, I logically, I knew there are great healthcare professionals here, but in the moment, because I'm just focusing on get my kids some help Right now, right before she goes into TK, I Google, like I on my phone. I was when we presented to the hospital after dealing with a GP, I literally came in with a UK type one diabetes campaign on my phone, because I thought, what if they think I'm some wacky American? Like there was a moment where I thought, could we, could we make it to New York before she goes into DK, because clearly, no one here knows what I'm talking about, right? And that's fairly irrational, because that, you know, there are, again, are great healthcare professionals. Now she has a fantastic consultant. But in the moment when I hadn't, I didn't have any experience with the NHS, it was pretty stressful, but, but we survived, yeah,

Scott Benner 49:00
but it's a good look into the uncertainty of the situation and how you felt on top of all that. Because, isn't it funny, you had the same thought that your your forefathers had, like, what we there's probably a place that knows better. Let's go there.

Emily 49:13
It's really interesting. Get out of here, yeah, yeah, but

Scott Benner 49:17
a train ride that would have been right, yeah, wow. Okay, so you get this all worked out, she comes home, and what's management like? And, you know, is it needles? Is it pumps? CGM, are available? Like, you get that stuff in any kind of short order

Emily 49:34
when she was diagnosed, the the NHS, or, more specifically, I think it's your called your clinical commissioning group, which is kind of your, where you live in the UK, funds some of the supplies. Okay? So at the time, I think they were funding the Libra, the skin the Libra, that you could scan, right for a lot of kids. And had we pushed to get the Libra, we probably could have gotten that fairly soon, but we left. So we left the hospital MDI, right. And then when we saw our first consultant, they, I think we asked about the Libra, and they were like, Oh well, you know, we'll ask about funding, but we could self fund Dexcom anyway, so we could maybe wait for funding of some sort. But they, they didn't seem very optimistic at the time about funding your our clinical commissioning group funding Dexcom. So I just called Dexcom. The nice thing is, here, Dexcom is just over the counter. We so we paid initially for Dexcom. I want to say it was like 159 pounds a month for all supplies, and at the time, that was cheaper than my friend in the US was paying with her insurance. So, you know, we just wanted to get started on the Dexcom right away. So I think she maybe had the g5 for a little while, and then the g6 came out, I think not too long after she had started on the Dexcom, and then we did MDI for, I think, less than a year, and our first consultant, you'll love this. I I said, you know, we're really interested in the OmniPod. And she said, okay, okay, yeah, we can order that for you. We can, we can do that for you. And I was like, great, amazing. You know, let's, let's get that OmniPod started, right? And so, so months go by between. So here you see the consultant every three months, right? And I went to, so, went to the next appointment. So, how's it? How's it going with the OmniPod? You haven't heard anything? Oh, yeah, yeah, yeah, we're working on that, right? So then, and then emailing the nurse to just saying, you know, how's the consultants promised us the OmniPod. So what do we, you know, what are we doing with that? And then, I think six months later, the I asked about the OmniPod, and or the consultant said, I think when we came to the the into the room, she said, Oh, did you get your port? And I said, Okay, wait, what port are you talking about? Are you talking about the port that you actually put the needle in and inject? She's like, Yeah, we ordered that for you. And I said, Oh no, no, no, no. I've been asking her for the OmniPod a pump for over six months. So are you telling me that that is not what you ordered. And she's like, Oh, and, you know, to her credit, like she could have just been really, she could have been really defensive and denied what she didn't know. But she she was actually really, she was great about it. She's just said, I'm really sorry. I thought I didn't know. I, you know, she didn't know at the time what OmniPod was.

Scott Benner 52:39
What did she order? You an i port? Yeah, yeah. Like that took six months,

Emily 52:45
yeah? Well, I don't even know if it would have to, I mean, we never got the I port. But anyway, so she just said, Look, I'm gonna transfer you to another hospital that actually has, you know, that will, that will do the OmniPod for you. And so then we transferred to a hospital at a different hospital, and yeah, and then we got on omnipot. Shortly after that, it's

Scott Benner 53:08
worth going over that you were standing in front of a healthcare professional telling them that you wanted a tubeless insulin pump called an omnipot, and what they gave you was this thing that sticks on you. It injects once, then you can put a needle inside of it to give yourself insulin, so you don't have to get poked over and over again. I

Emily 53:26
know it's pretty bad, but I think NHS has been underfunded for years and years and years. So you've got healthcare professionals that are, you know, they maybe don't have the time and resources to learn more supplies like this,

Scott Benner 53:41
very, very nice. This is like me calling up, saying I'm buying a car, and I show up and you give me a tricycle, and I go, I mean, it's still transportation, but not nearly what you heard me say, you know, yeah, simply,

Emily 53:53
you get used to a different system here, though. I mean, I have been here eight years, and I think now, you know, waiting for things like, right now Rosie's on the we're waiting for her to come up to get OmniPod five. So we're still using the arrows. Oh, you're on the arrows. No, we're using, yeah, only because I feel like if we switch to dash and loop, because we're looping with arrows, right? If we switch to dash, I'm just a bit worried that we'll get stuck on that and not be able to move to OmniPod five for another four years.

Scott Benner 54:22
That a consideration of being in the UK.

Emily 54:24
I mean, I just don't know about switching like that. I just, I just don't know, but we're, we're on the list for OmniPod five, and, yes, it's weight, yes, it's, yeah, you, you don't really get things right away, like you can sometimes kid in the US, but I'm okay with that. I mean, we don't pay anything now, so all of our supplies are hotter. I can't wait

Scott Benner 54:46
for them to call you one day and tell you that it's already and you show up and they get you a Roomba. You're like, Wait, this is a robot vacuum cleaner. I wanted the omnipot Five, no, but on a chance for you. Oh, how. Hospital. Who knows what that is?

Emily 55:01
Yeah, no, it's much better. I assure you that it's now her consultant now is fantastic. And I mean, every time we go to our appointments, they're just like, you guys are doing great. What do you want? Right? And so we've said, you know, we're ready for OmniPod five. Well,

Scott Benner 55:19
living in this system and having the ups and downs you've had with it. How are you How did you figure out how to, how to help Rosie like, where did all that information come from? From your friend who has type one kid has type one? No,

Emily 55:32
no. I think my friend and her son had such a different experience. I don't I mean, Facebook wasn't even a thing when she, you know, when her kid was younger. I mean, I listened to the podcast fairly early Facebook groups. I went to a sugar surfing workshop fairly early on. I went to what used to be friends for life here, which is now called, see, I think it's called children with diabetes. There's a it's like friends for life events, the UK version. And the thing is, like, though, those friends for life events evidence based lectures for the parents. And so it was a kind of a combination of different things, but I knew that I wasn't going to get a lot of information from, you know, the consultant that didn't know about OmniPod. And in fact, I remember going to one of the appointments fairly early on, after we got the Dexcom and showing the nurse and the consultant her Dexcom graph. And they were like, Oh, she's doing great. And I said, Yeah, but she's, Look, she's, you know, she's eating, and then she's spiking to 14, and sure she's coming back down, but she's spiking to 14. And I remember the nurse saying, oh, yeah, but you know, we all spike after we eat. And I was like, but I don't think not. I just don't think I yeah, I don't think we spiked to 14. Obviously that wasn't right. Do

Scott Benner 56:58
you think they thought that that happens to everybody, like people with and without diabetes, my

Emily 57:03
guess is they probably be a bit more informed. Now, I think maybe access to information is maybe better than it was. You're

Scott Benner 57:11
so polite about this. Are you afraid you're gonna get deported or something? What's going on? You're so like, anytime you're like, Oh no, it's okay. They're better at it now. Or I don't think they meant it, or like, like,

Emily 57:22
I think, I think I have a lot of compassion for NHS employees that, you know, I just think that a lot of folks are doing the best they can with what they have. Again, it has been underfunded for years and years and years, and, you know, even at that I I'm staying because I feel like my kid will never, ever pay for supplies, right? But it's, it's not without problems, and that, that being one of them, you get folks that I think the other problem is at that time, I don't think that pump rep or reps that are pump companies. I don't think they did a fantastic job of getting into the UK market here. I think, you know, we go to the consultant and she'd say, like, well, here we have this Medtronic and and that was kind of like the only option. There may have been one other one, but you could tell, you know, they probably had done some kind of session with a Medtronic rep. And I'm, you know, I'm not testing on Medtronic or anyone else, but I just think they had a kind of a command of the market, or knew how to to get in with consultants here that maybe, at the time, OmniPod wasn't in yet, maybe they definitely weren't in at that clinic,

Scott Benner 58:41
yeah. So, you know, we never really said, you said you had kids early, went back, got an advanced degree. What did you do professionally after that?

Emily 58:52
Oh, so I was physical therapist in the US. Okay,

Scott Benner 58:55
so you have, you have, like, that knowledge of that side of it, like being on the provider side for sure? Yeah, it's not easy either. I've been doing that cold wind series with providers, and you know, they're they're anonymous, and they talk about their jobs and everything. And by the time I get done every one of those conversations, I think there's problems on every side of this issue. And I don't totally, yeah, and I don't see a way to fix any of them. It's, you know, always, you know, at the core human issues, obviously. But I don't think there's any way around it. I think we should all just be happy that things run as well as they do. You know what? I mean, yeah, absolutely, it's interesting. But anyway, it's just, it's you're on their side. I like, as you're going, I don't know if you know that about like, about how you there's nothing wrong. Yes, no, I

Emily 59:44
was really mad. I mean, I was really upset. It took me a long time to get over the GDP. I mean, I just thought he was an idiot. It took me a long, really long time to get it over my hospital experience, and I think part of, part of it was. That I presented to this hospital expecting to be treated like a peer and expected to be listened to, and I was, to an extent, but I just felt like, you know, we left with we stayed in the hospital. So we stayed in an award for like, five days, which is a bit ridiculous, considering, you know, we had some experience with a kid with type one. I think it had someone just in the beginning, come to me and said, You guys are going to be great. This is, you know, you know you're going to be fine. We're going to get you trained, we're going to send you home. I think I would have been fine, but we but because I thought that social services was looking for me. And here's my kid, who, you know, she's always home educated or unschooled, right? And she had this, you know, idyllic childhood in London, but, yeah, we didn't do the normal route. I didn't send her to kindergarten. Or here, it's called reception in here one. But you know, we were living kind of, you know, atypical, yeah, lives compared to other, most other people. Because here definitely, definitely at the time. I mean, you know, home education was very rare. It was really stressful. It took me a long, long time to get over this idea that social services is looking for me, and they're going to, you know, make me send my kid to school, or, you know, investigate me unnecessarily and and I felt really protective of her education. I felt like, you know, what a horrible time to assess someone's knowledge or your home Ed provision, when they're getting a type one diagnosis, when they probably haven't felt well in months, right? I mean, she would, she would wake up in the morning, and for months she was, I mean, she she was a bit irritable, right? And she was irritable with her best friend, and so she'd get up in the morning, and she'd eat breakfast, and then she'd just kind of like, sit with her head resting on her hand, like she was going to fall asleep, and she was having a really hard time learning how to read. And by that time, you know, she was eight years old, and I thought, you know, does she have dyslexia? You know, it just, or, you know, maybe I thought she had, you know, some kind of learning disability, but it didn't present until then, right?

Scott Benner 1:02:26
And then that possibility comes in that they're going to uproot the rest of her life now that you've got a diagnosis, yeah,

Emily 1:02:31
really stressful. And, you know, actually, I don't think she's dyslexic. I think she just had diabetes this whole time. And, you know, poor thing, her sugar has been sitting at, you know, 20 something for probably a long time.

Scott Benner 1:02:43
Yeah, she's lucky. She was upright and moving, let alone thinking and trying to learn. Right, right? Okay, well, I want to kind of finish up with, you know, I know people sign up to do this, like so far in advance that you probably don't remember what you wrote, but you know, when it said, what are some of the themes you'd like to cover. You said parenting, modeling the care with joy transitions to teens, giving kids full autonomy in most aspects of their lives. Now, I think your conversations talked about the the autonomy part a lot, actually, but what did you mean about the rest of it? Like, what about modeling care with joy? What did you mean by that? Yeah,

Emily 1:03:20
I mean, well, Rosie's 14 now, which, I think sometimes this, you know, independent, independence with diabetes, or moving towards independence, happens so fast. And probably when I wrote that, I was doing a lot more for her, but now she's so she's going to school. Now she's, she chose to go to school this year, and I totally support that, you know, whatever she wants to do, and she's doing a lot more of the day to day care, and she's doing great. And I think you know where I was going with that was one thing I really have appreciated about the podcast, is I feel like the way that you have cared for Arden is probably fairly similar to how I've cared for Rosie, and I think, have you been a different parent or advocated at a different way of parenting or and parenting with diabetes? I wouldn't have been a listener, right? But I think you know, managing your child's diabetes with a smile on your face and just doing it, even when it's like the smallest task of, you know, poking their finger or bolus, saying right when the phone, the phone could be right next to them. And even if you say, Oh, hey, could you, you know, could you please bolus for this meal? And they're, you know, they don't want to, or they're busy, or they're, you know, they're playing a video game, or whatever they're doing homework. And so you just do it for them and you and again, you do it with a smile on their on your face. I think, I think it's a great way to manage I think probably outcomes are better that way. And my guess is to get more independent, capable individuals, adults with type one that way.

Scott Benner 1:04:59
Okay, okay, that's really interesting. I I mean, I think the same thing. I think you're, you're gonna do these things anyway, if you moan and groan through it, it's just gonna, it's gonna permeate everything, you know, yeah, yeah. And like, I enjoyed this with you. I appreciate it. It's a different perspective on something. I like that. I like that you and I agree. Like, it's interesting because, as you were talking about, like, you know, letting kids learn at home and on their own paces, I guess all makes a lot of sense to me. Like, when you said the kid came back ahead, not behind, I thought that makes sense to me too. Like, all of this makes sense to me. And then the panic I have from growing up broke, like, sets right in like, well, what if you can't pay for yourself? Like, what if you can't get insurance? Like, what if Arden, like, couldn't get health insurance, like, that kind of stuff. Like, yeah,

Emily 1:05:51
for sure. I mean, that's definitely a real concern in the US, for sure. Yeah, I'm definitely not anti degree. It's more of a just, no,

Scott Benner 1:06:02
you don't come across as anti anything. Yeah, you come across as kind of like, thoughtful, wide open, willing to experience things you're not like, you know, you're not, not worried about 50 years from now, but you're not letting it make your decisions for the moment. I thought it was all really interesting. I just, you know, just interesting. Even further, how different people's perspectives can make them pick that information up and what they think about next, like, once they hear it, like you don't even, yeah, this is really, it's wonderful if we haven't missed anything. I'm gonna say thank you, but I'll ask you here, is there anything we didn't talk about that we

Emily 1:06:42
should have? I can't think of anything nice.

Scott Benner 1:06:45
See how easy this was. Were you? You weren't worried, right?

Emily 1:06:48
Much easier? Yeah, I just didn't want to do the gas station. Voice, or cry, those were my goals. You

Scott Benner 1:06:56
didn't. You almost made me cry with that going to California thing, and I didn't hear a gas station? Voice, yeah, no, I feel like I was pretty good about that. Yeah. I think of that as a local news anchor. Voice, too. I love did they do that in England? Did you do that fake excitement about everything on the news?

Emily 1:07:14
Guess so. Yeah. I mean, I don't watch a lot of I don't either, but that kind of news, yeah,

Scott Benner 1:07:21
the local news just cracks me up. I love it. He's like, Hey, Bobby, I have a great story today about a cat that died. Like, why are you sound so excited the poor cat? Yeah,

Emily 1:07:31
that's true. I don't, I don't, I don't think I've ever seen that here. I guess I haven't really seen, like,

Scott Benner 1:07:35
local I love it. When they try to transition from one thing to another in that same voice. They go from like, this upbeat, stupid thing to something horrific, but they never leave that big, dumb voice they have. It's fantastic. Yeah, yeah, there's this bad, yeah. Everyone should find all right, I'm gonna tell everybody how to find this. There's a Casey or Casey case I'm is not a person. Probably anyone knows anymore, but if you he was a radio disc jockey, really like very popular he was on all over the country. So if you Google Casey, Casey Casey case some dog

Unknown Speaker 1:08:11
death

Scott Benner 1:08:12
dedication, go ahead and YouTube Casey Casey dog death dedication, and you will find audio of this guy trying to lay down ads, and they come out of, like, a birthday celebration into a dedication for a dead dog. And he just flips out in the middle of it. He's just like, how do you expect me to come out of a goddamn upbeat thing into this fcking dog dedicated? He's just like, going crazy anyway, that's uh, that just find that you'll, that'll be a nice five minutes. I don't know if that's like, something I can like, include here, or if it's copyrighted, but holy, take a second because you want to hear a person just like, like, in five seconds. Have an existential like, decision to make, like, Am I really gonna do big happy voice out of a birthday dedication into a dead dog like any just,

Emily 1:09:10
he just loses his it's fantastic, and no one can really blame him for losing it

Scott Benner 1:09:18
as he's doing it. I'm like, he's 100% right. I mean, he sounds like a diva because he's, you know, recording ads for like a, like a, I don't know, a radio station. His life is probably fantastic. But, you know, he's like, he just is, like, how do you expect? It's fantastic. Go find it if you haven't heard it. Okay? Emily, thank you very much. Can you hold on one second for me? Sure. Thanks. Oh. A huge thank you to Eversense CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the Eversense CGM? You just replace it once every six months via a simple eight. An office visit, learn more and get started today at ever since cgm.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, a huge thank you to one of today's sponsors, G VO, glucagon. Find out more about G vo hypo pen at G VO, glucagon.com, forward slash juicebox. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juice box. If you're newly diagnosed, check out the bold beginnings series. Find it at juicebox podcast.com, up in the menu in the feature tab of the private Facebook group, or go into the audio app you're listening in right now and search for juicebox podcast, bold beginnings. Juicebox is one word. Juicebox podcast, bold beginnings. This series is perfect for newly diagnosed people. 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, wrongwayrecording.com. You.

#1280 Perfection and Secrets

Kristen is pregnant, has a 2 year old son and she has type 1 diabetes. We talked about her pregnancies. We also discussed eating disorder. This is a deep conversation about growing up.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to today's episode of The juicebox podcast.

I can't read the entire description I have here for today's episode. I'm just going to go with the part I highlighted, which says this is a deep episode about having up parents, type one diabetes, eating issues and a lot more. 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, 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 when you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. When you use my link, hungry root.com/juice, box, you'll get 40% off of your first delivery. That'll happen automatically at checkout at hungryroot.com/juice box. You juicebox.

Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it one blood test can spot type one diabetes early tap now talk to a doctor or visit screen for type one.com for more info. Today's episode of The juicebox 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/juicebox this episode of The juicebox podcast is sponsored by the ever since CGM. And sure all CGM systems use Transcutaneous sensors that are inserted into the skin and last seven to 14 days, but the ever since sensor is inserted completely under the skin, lasting six months, ever since cgm.com/juicebox,

Kristen 2:31
hi. My name is Kristen, and I have been a type one diabetic for 25 years.

Scott Benner 2:36
How old are you? 28 when you were three, yeah, just,

Kristen 2:41
I had just turned three, so just hit my 25 year anniversary.

Scott Benner 2:46
Wow, that's really something. Arden was just a couple weeks past her second birthday.

Kristen 2:51
Yeah, everyone acts like I was very young when I was diagnosed. I'm like, I've heard about Arden, so it makes me feel older. There was

Scott Benner 2:57
somebody on recently, I think their child was diagnosed at like, nine months of, you know, every once in a while you'll hear a story about, like, in the hospital, like, that's not very frequent, but, you know, I've heard them before. Yeah, yeah, absolutely, three is young, though, make no mistake, did your parents have other children at the time? Yes,

Kristen 3:15
so I'm the middle of three, and they had my older sister and younger brother at the time as well. Oh, everybody

Scott Benner 3:23
was there. Wait, you were three and your mom already had another baby. Yeah,

Kristen 3:26
we're all exactly two years apart. So things moved quickly.

Scott Benner 3:31
Do you notice your mom on a similar pattern for other things? Did she go on vacation every 24 months or like? No,

Kristen 3:38
no. I think it was just at that point in their life, they were very routine. I mean, they acted like some of it was a surprise, so I don't know.

Scott Benner 3:47
I thought you were gonna say prolific. Did they consider continuing? Do you think they wanted more than three kids? I

Kristen 3:55
know originally, but I there was a lot of issues. Like, in general, my mom wasn't really supposed to have any past one. I think by the time they hit three, they had to stop.

Scott Benner 4:05
I thought if you got diabetes, and they were like, whoop, Nope, we're done. That's enough.

Kristen 4:09
No, no, that didn't stop them.

Scott Benner 4:11
Hey, your parents are, uh, what are they hippies? Catholic. What are we looking at here? Catholic, Catholic. Gotcha. Gotcha. We're making a making an army for Jesus, I understand that's hilarious. Yeah, I don't understand people who like, I'm like, I don't get it. It's expensive to have kids, and it throws me off when people keep pumping them out.

Kristen 4:32
I always thought I wanted like, four, but not I don't think so anymore.

Scott Benner 4:36
Do you have any children now?

Kristen 4:37
I do. I have a two year old, and I am a little over 12 weeks with my second wait.

Scott Benner 4:44
Kristen, you're preggers.

Kristen 4:45
I am,

Scott Benner 4:46
I am. Congratulations. That's so nice. Yeah, lovely. Oh, so tell me about your oldest how old? Again, he's turned

Kristen 4:55
two in September. So he's a truck, car, vehicle. Loving little boy? Yeah, I've been up with him since 5am so he's an early riser. He's

Scott Benner 5:05
like, hey, let's get up now and push this truck into the wall pretty much. Yeah, we could lay here a little longer. What would be wrong with that? Mommy's cooking a baby? Oh my gosh,

Kristen 5:16
no. Yeah, he gets up, talking about trucks in his cribs, though, that's when I know it's time to get in. No kidding,

Scott Benner 5:20
does your husband drive a truck or?

Kristen 5:25
No, we didn't even own a car until he my son was like, one because we were living in the city, so he just naturally came out this way. I guess you

Scott Benner 5:33
didn't even own a car.

You were just like, you're just like, hey, we

can walk. We're in the city. This kid's like, we need a truck, yes, yes. That's so interesting, isn't it? Well, hey, I mean, let's, I guess, start at the beginning. So do you have any recollection of your diabetes? And I guess at what age do you start remembering it?

Kristen 5:54
Yeah, I actually have a few flashes of memories from my diagnosis. I think just because it was such a big event in my life. So I remember being in the hospital and my parents getting an injection, I think that the nurses were trying to make me not as afraid. So they just kind of stuck my parents the needle to show me it wasn't a big deal, which my parents later told me they weren't aware it was going to happen.

Scott Benner 6:20
Look, honey, it's no big deal. Point, yeah,

Kristen 6:24
not really sure if that would happen anymore, but yeah, gotcha good. And then I remember coming home from the hospital, but I don't really remember the actual diagnosis too much. I know that when it was my third birthday, I was going kind of around to people which I vaguely remember and asking different people for drinks, because I knew if I kept asking my parents, they would stop giving me juice. So I was going around to different people and trying to work the system to get as much liquid as possible. But I was not diagnosed until a few months after that, so I think it was just kind of brewing at the time. Look

Scott Benner 6:59
at your little drug seeking habits at three years old, like, I'll go to this emergency room, and then if they say, No, I'll go to this one. Yeah, I was working the system that's super interesting at three years old that you were like, I'll just keep testing this dam to see where it cracks. I mean, how would you know that? I guess you're just so thirsty you get desperate, even at that

Kristen 7:18
age, yeah, and I think I knew that my parents just knowing them at the time. I mean, they've always been fairly strict, so I probably knew that they would say, hey, you've had enough juice stop. So I just knew I had to come to the grandparents, the aunts and uncles and everyone else, just to try to get as much as possible. Getting

Scott Benner 7:35
older means a world of change, but some things still stay the same, like being at risk for type one diabetes, because type one can happen at any age. So screen it like you mean it. If just one person in your family has type one, you're up to 15 times more likely to get it too, and 50% of type one diagnoses happen after the age of 18. So screen it like you mean it. Type one diabetes starts long before you need insulin and one blood test could help you spot it early and lower the risk of serious complications like diabetic ketoacidosis, known as DKA. So don't get caught by surprise. Screen it like you mean it, because getting answers now can help you get prepared. The more you know, the more you can do. So don't wait. Talk to a doctor about how to get screened. Tap now or visit screen for type one.com to learn more. Again, that's screen for type one.com and screen it like you mean it contour, next.com/juicebox next.com/juicebox that's the link you'll use to find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top. You can click right on blood glucose monitoring. I'll do it with you. Go to meters, click on any of the meters, I'll click on the Next Gen, and you're going to get more information. It's easy to use and highly accurate. Smart light provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next.com/juicebox and if you scroll down at that link, you're going to see things like a Buy Now button. You could register your meter after you purchase it. Or what is this? Download a coupon, oh, receive a free contour next gen blood glucose meter. Do tell contour, next.com/juice box. Head over there. Now get the same accurate and reliable meter that we use, just like just popping around that party, being like, hey, juice, juice. And they're like, Oh, look how cute she has give her juice, right, right, right.

Kristen 9:55
This is fine. So

Scott Benner 9:56
growing up with it, I mean, 25 years. Ago. I mean, what year was that? 1999

Kristen 10:04
diagnosed at the beginning of 99 Okay, do you like

Scott Benner 10:07
how I was like, I'm trying to do the math on it. It's 2024 there was no math. So ridiculous I said it, and then I was like, oh, no, dummy. Arden was diagnosed in 2006 so you have 10 years on her prior, and we were only getting needles and a crappy meter. So were you right at the advent of, like, Lantis and everything becoming big? Or, I guess that was the late 80s. So how did, why am I just asked you what your management was like. I'm sorry. I was

Kristen 10:36
definitely regular at NPH. I was eating on a schedule, so every night growing up, I had to have dinner at 4:30pm I ate the same amount of carbs for every meal, the same breakdown, the same schedule, pretty much every day, with no real deviation from that. And I use syringes. I never used a pen or anything like that, up until I started my pump in third grade. Third

Scott Benner 10:59
grade. Okay, by the way, anybody wondering if we ever edit out content? The fact that you just heard me so in artfully ask that question tells you we don't edit things out. Because I should have just said, What was your management like? So in third grade, what do you what kind of pump do you get?

Kristen 11:16
I got the mini meds. So I actually don't think I've heard other people mentioned this on the show before we actually had that summer leading up to third grade, sales people from different pump companies come to our house and kind of demonstrate their product. I don't think that happens anymore. I haven't heard other people talk about that, but that's what they did for us. And I ended up with the mini med. And I assume it was kind of the Medtronic. And I assume that was just because of insurance. My

Scott Benner 11:43
parents had a vacuum cleaner that was sold to them by a door to door salesman.

Kristen 11:47
Yeah. Well, you apparently used to get pumps that way too.

Scott Benner 11:50
Yeah, that's Hi. I'm here from mini med. They come into your living room and spread it all out. And, yeah,

Kristen 11:55
yeah. And I remember the Animus people coming to Cosmo, so back when there was all those now, uh, defunct companies, they would all come to my house,

Scott Benner 12:07
yeah. Now the internet fixed all that, by the way,

Kristen 12:09
yeah, yeah, it's a it's a little more efficient now. Now they give

Scott Benner 12:13
$50 to an Instagram influencer, and they tell you about it exactly a little cheaper for the company actually, okay, so you start a pump so that now you're using just what Humalog? Maybe? Yeah,

Kristen 12:26
I know. I've switched a few times because of insurance between Humalog, Novolog, but between those two, pretty much the same, and I used just the mini med with that pretty much until a year and a half ago is when I switched to tandem. So I was with Medtronic for quite a while. Okay,

Scott Benner 12:44
you using the T slim now? The x2

Kristen 12:48
Yes, so I'm using the T slim, but I'm not using any of the algorithm. You? Bing, yeah.

How come? Well, I

wanted to have tighter goals. And also with pregnancy, I know it's not really possible to get those same pregnancy goals with it. And because I knew I was hoping to get pregnant, I didn't want to kind of change my settings to fit for the algorithm, because I knew I would be switching off of it. So I kind of just, I've been going this way, and then hoping that eventually I'll actually use some of those features.

Unknown Speaker 13:21
Okay, all right, I

Scott Benner 13:22
get you. All right. So first baby was with the A Medtronic pump,

Kristen 13:28
still, yes, yes, yes, but Dexcom.

Scott Benner 13:32
So you have a very short list of what you want to talk about here, and it runs a bit of a gamut. I'll lay it out for people. It says shame, mental health, eating disorders, my favorite part, family dysfunction and then, and then pregnancy. By the way, I knew you had family dysfunction when you told me you were Catholic. Yeah, it's part of the deal. No shade on anybody. I just know the game you. Why don't we start at the beginning? What did you feel ashamed by

Kristen 13:55
I think that a lot of people that I hear talking about in these communities, they're very open with their diagnosis and everything. I have never been very open with it. I think that I have evolved a bit. Now I can wear my Dexcom, my arm and everything. But growing up, I didn't tell people. Nobody knew I had diabetes. Even in college, my roommates didn't know. Just nobody knew. Wait,

Scott Benner 14:19
Kristen, there's the story you lived in a space with someone who didn't know you had type one. Yes. How do you accomplish that? I

Kristen 14:27
just never was open with anything about it. So if I had anything that needed addressed, I addressed it. It was before I had a CGM, so there weren't alarms going off, okay, yeah, I just never mentioned it. They didn't

Scott Benner 14:42
see infusion sets or alcohol wipes or nothing. Nope,

Kristen 14:47
I would change my pump sites in the bathroom or when they weren't home. I just kept it tucked away. I wasn't like I wouldn't lie about it if somebody were to ask me, but nobody would know to ask me about. It so it was just tucked away, hidden. Nobody knew.

Scott Benner 15:04
Were you guys close?

Like, did these same people know about your your like, dating life, or, you know, your home life, or anything like that?

Kristen 15:12
Yeah, I think that I kind of kept people at an arm's length. There were roommates that I was close through when I went through but again, I just never mentioned it. I had one person I lived with for two years, so they eventually kind of knew, but they didn't know anything about it. And if I had been laying on the floor, they wouldn't have known what to do about that. Did

Scott Benner 15:33
that ever occur to you? Did you ever think maybe I should talk to these people so they understand the safety aspects of this?

Kristen 15:39
I think looking back, it definitely has, but I think I've put myself in the past through situations where it's like, well, if I'm laying on the floor, I almost would have preferred that than have to tell all these people about it.

Scott Benner 15:52
Is that part of your personality, or was that specific to diabetes?

Kristen 15:56
I think it's both. I think that growing up with diabetes for pretty much my entire life. I kind of just came up that way, and I kind of just adjusted myself around that. And I think that in general, I'm kind of quiet about things. I'm more reserved. So I think that that also played into it, for sure, interesting.

Scott Benner 16:16
You look back and have feelings about the way it was handled. Do you wish it was different.

Kristen 16:20
I think it's still a work in progress, so it's hard for me to look back fully. I think one thing I think about a lot is I remember when I was working at Wendy's in high school, there were times where I felt low and I was working and I just wouldn't stop until I felt like I could sneak away and get a sip of juice. And looking back, I'm like, that was a really, really, really bad move. But at the time, I'm like, I would rather have nobody think anything of this and be exactly like everybody else, even if that puts me at risk. And I think that that's something that looking back is absolutely ridiculous. But at the time, it felt like the right thing to do, yeah, you

Scott Benner 16:59
don't want to let Dave down,

Kristen 17:01
right? Gotta flip those burgers. Yeah, it's

Scott Benner 17:04
a very windy, specific reference that I'm not certain everybody's gonna get, but that's fine. I think I'm surprised by this because of how many people say, Oh, I grew up with it, so it's just second nature to me. But that's not the case for everybody, and you're being very clear and open about that fact. So it didn't matter that you had it since you were three, and you were accustomed to it and all that other stuff. Was there shame in your house about it? Like, where did you learn to be ashamed?

Kristen 17:30
Yeah, I mean, I think I don't know if it was specific around that. I mean, I know growing up, especially with the pub, my mom would always help me find ways to, like, hide it in clothing and say, oh, like, we got to make sure it's covered up. So it was a little covered up that way. When I did first get my Dexcom and have it on my arm, there were comments like, Oh, is there any way that you could put it somewhere it's not as visible. So there definitely were some comments about that.

Scott Benner 17:54
Who said that to you? Who said, Can we put it somewhere less visible? My mom, Oh, does she ever mention you look fat or anything like that? No, because of the eating disorder. Oh, my God. So yeah, yeah. But so how long had that been happening? So

Kristen 18:10
that happened when I was in high school. I think it really started around eighth grade, but it reached kind of its height in ninth grade. What did the height of it looked like so I was extremely restrictive anorexic. I was eating maybe max, 500 or less calories a day. I had lost pretty much all of my body fat. I had bruising down my back because just my spine pressing against chairs was so intense, so at that point, because of the diabetes, I couldn't go to an inpatient facility, at least that they felt comfortable with. So I would go around two hours away. We'd stay at a Ronald McDonald House and stay there through the week, go home on the weekends, start all over again. So I did that for quite a few months. And then after that, I was continuing to do outpatient care. Once I went back to school and back to my normal life,

Scott Benner 19:08
your mom or your dad traveled with you to the therapy and stayed with you all week. Yeah,

Kristen 19:14
so it was all day I would be at a center or where they would do therapies, things like that. My parents would work when they could from the Ronald McDonald House, and then kind of swap out so they did every other week, so that they could use their FMLA and kind of go that way.

Scott Benner 19:30
The tree I was barking up earlier was, you know, was your mom, one of those people was like, Oh, are you gonna wear that, like, stuff like that. But she wasn't.

Kristen 19:38
She can be yes, yeah, I

Scott Benner 19:40
gotcha, yeah. And do you think the eating disorder came from, like, psychological stuff? Do you think it came from diabetes pressure, or is it a blend?

Kristen 19:50
I think a blend, for sure. I think that part of it was because I was such a strict, regimented person with my eating before the pump, I convinced myself. That because of the pump, I was able to eat more freely, and that was a bad thing. I was not overweight at that time or anything. But I think just going through, you know, the changes of becoming a middle school or high schooler, there were some changes, and I think that that was hard for me, and I think that there was just a level of perfection that was expected that I kind of was reaching that way. It's

Scott Benner 20:23
an expectation from yourself or from other people, from both. I

Kristen 20:28
think that, you know, growing up, it was definitely a you have to get straight A's, you have to present yourself well, be very behaved, seen and not heard. I think it was a lot of those things that I didn't really have an outlet to be imperfect. So this was one more way that I could supposedly make myself perfect.

Scott Benner 20:47
25 years ago, you were raised to be seen and not heard. Yeah,

Kristen 20:52
pretty much. I mean, not exactly, but it was definitely stricter upbringing.

Unknown Speaker 21:00
Interesting.

Scott Benner 21:01
Feel like there's more you want to say, but you're trying to be polite.

Kristen 21:06
Is that happening or no, no. I mean, I'm sure, I'm sure we'll get into everything.

Scott Benner 21:11
Oh, I see, okay, but just warm me up a little bit. Then, then you'll, then you'll dish I got it. The process of going to that therapy and staying at the Ronald McDonald House was months long. Yes,

Kristen 21:23
and then afterwards, I did additional follow therapies and visits and all of that. Did it help you?

Unknown Speaker 21:31
I, at the

Kristen 21:33
time, didn't feel very helped by it. I think that there were with the diabetes, additional layers there, especially because, for example, if I had to treat a low blood sugar and had to eat food for that reason, they were like, Oh, well, those don't count. Those calories don't count towards things. So that became really hard for me. I think that, yeah, it was just really difficult. And I think that it wasn't till I kind of had my own, like, internal decision to change that. There was actually much progress made. I was just trying to do whatever I could to get out so that I could restart my eating disorder again once people were not looking at me anymore.

Scott Benner 22:12
Oh, this is like, I've heard addicts talk about this in rehab, like they're like, I just wanted to do my time and get out so I could start using it again. Yeah, I

Kristen 22:21
figured if I just did what I needed to do, I could get out. And I think at the time too, I was also fairly suicidal and things like that, just depressed. And I think that I just kind of was like, Okay, I'm just gonna give up, because this doesn't matter, and then I'll fix it later.

Scott Benner 22:40
What does an eating disorder look like? Were you like, binging, purging? Were you not eating like?

Unknown Speaker 22:46
How does that work?

Scott Benner 22:48
This episode of The juicebox podcast is sponsored by the only six month wear implantable CGM on the market, and it's very unique. So you go into an office, it's, I've actually seen an insertion done online, like a live one, like, well, they recorded it. The entire video is less than eight minutes long, and they're talking most of the time. The insertion took no time at all, right? So you go into the office, they insert the sensor. Now it's in there and working for six months. You go back six months later, they pop out that one, put in another one. So two office visits a year to get really accurate and consistent CGM data. That's neither here nor there for what I'm trying to say. So this thing's under your skin, right? And you then wear a transmitter over top of it. Transmitters got this nice, gentle silicon adhesive that you change daily. So very little chance of having skin irritations. That's a plus. So you put the transmitter on, it talks to your phone app, tells you your blood sugar, your alerts, your alarms, etc. But if you want to be discreet, for some reason you take the transmitter off, just comes right off. No, like, you know, not like peeling at or having to rub off, adhesive just kind of pops right off. This silicon stuff, really cool, you'll say it, and now you're ready for your big day. Whatever that day is. It could be a prom or a wedding, or just a moment when you don't want something hanging on your arm. The Eversense CGM allows you to do that without wasting a sensor, because you just take the transmitter off, and then when you're ready to use it again, you pop it back on. Maybe you just want to take a shower without rocking a sensor with a bar of soap. Just remove the transmitter and put it back on when you're ready. Ever since cgm.com/juicebox, you really should check it out.

Kristen 24:33
I was just not eating. For the most part. I was eating very, very, very little food. If I was eating any food, I would kind of make sure it was a carb or something, so that I could input it into my pump and count that. I didn't realize at the time that this might have been part of it, but because I was eating so little, I needed very little insulin, and was always going low, so I would just disconnect from my pump quite a bit for hours. An hour. So that was probably very bad for my health. And I was also bolus and ghost carbs in there so that it looked like there was a record of me eating things that I was not. Would

Scott Benner 25:10
you take your infusion set off and bolus and just let let the insulin come out and not give it to yourself, just let drip into the air. Oh, wow. Well, you're industrious. How old were you at that point? I was in ninth grade. Hmm, interesting. Suicidal, like, actual ideation, or just, I don't, like, just, like, generalized, like, I don't want to live, that kind of stuff.

Kristen 25:33
Suicidal, the fact that I had a plan that I figured I could bring out if I needed to.

Scott Benner 25:39
You had a back pocket I got you. Yeah, there are people who have disorders, you know, of their mind, and that's obviously true. And there are people who are put in situations that push them into these directions, too. I'm trying to figure out which one you are, or if you know what your story is,

Kristen 25:57
I think that it

was probably a situational mostly. I think that I struggled a lot with my mental health and things like that growing up. And I think that my mental health has drastically improved since

Scott Benner 26:13
you got away from your parents. Yeah.

I mean, that's what it sounds like, high level stuff.

Kristen 26:20
Were you being abused? No, not physically abused? No. Lot

Scott Benner 26:24
of yelling and screaming. Yeah, yeah. Lot of do this, do it exactly like this, or you're in trouble, that kind of stuff. Were they mentally unbalanced? They

Kristen 26:35
weren't going to therapy or anything like that? No, I didn't think so. But there was a lot of issues, and there were some substance abuse issues as well. We

Scott Benner 26:44
talking about, like a 12 pack a day, or beer, no.

Kristen 26:48
So my father had, still does have issues with alcohol, more of like binging it. And I actually didn't realize this until I was in my eating disorder recovery, when I was in a clinic, there he was sometimes was acting odd, picking me up. So when he was showering one day, I checked the top of the closet and I found empty bottles of vodka and things like that. Okay, so

Scott Benner 27:13
yeah, was he functioning or not quite functioning? Functioning?

Kristen 27:17
Yeah, he's held a good job and everything like that. But when stressful situations pop up, and apparently this has been kind of throughout his life, it would be like drink an entire bottle of vodka, okay?

Scott Benner 27:30
And your mom anything with her? Or was she just like cowering in a corner?

Kristen 27:34
No, no,

definitely not cowering in a corner. I think that she was just somebody that was a little more vocal and strict, and I think since then, she's also had a lot of medical issues, which have impacted her a bit, and I think somewhat mentally as well. So it was just kind of a frantic and hectic situation to be in. You

Scott Benner 27:57
think maybe she was trying to keep you guys in line so not to, like, set your dad off so he wouldn't start drinking. I

Kristen 28:04
don't think so. Truthfully, we were kind of dragged into things more than I think I would drag my children into things. So I think it was just maybe a lack of the emotional maturity to handle things. Gotcha. Were they young? Yeah, they were fairly young when they had us. So I think she was like, 25 when I was, I mean, I'm also a

Scott Benner 28:28
family. I was gonna say you're younger mom too, but not like, not like, super young, but you had your first when you were, what, 2625

Yeah, yeah.

I mean, I'm not saying anything. My son's gonna be 24 soon, and my wife's 50 so I'm pretty sure she was like 25 or 26

Kristen 28:45
Yeah, no, my parents are 55 and 56 now,

Scott Benner 28:50
yeah. Did they know that they I almost cursed? Is that right? If we curse? Yeah, no, feel free. Did they know they you up? No, they have no idea. No idea. Oh, boy. That must make you somewhere between insane and angry when you see them.

Kristen 29:06
Yeah. I mean, I think it's just a lot easier again, once I've left the house that I can just It's fine. I'll just go there and we all put on their face. But I think that also kind of goes into the shame is that everyone pretends everything's perfectly okay, and that's just kind of what we've decided to do. Yeah,

Scott Benner 29:24
that's my, one of my pet peeves, when you know, and I know, and neither of us say, Yeah, it feels like such an insane waste of time. I can't get involved in it. I think that they don't know. They don't know, yeah, they think they're boy and they're still so young, you know? Like, that's gonna go on for years. Still it doesn't go away. Like, your alcoholism doesn't, like, fade when you get older, you just keep going. You know what I mean? Like, it's and especially in that functional thing where it doesn't like, kill you, but you're always inebriated.

Kristen 29:59
Yes, yeah, he's done treatment more recently. That's but again, it's gone in and out. Yeah.

Scott Benner 30:08
I mean, you're not sitting here feeling very hopeful about it. Is that what you're saying? Yeah, I

Kristen 30:11
go back and forth. I thought that he had been, he had been clean for months, and then when we were there over Christmas, he just randomly went out and drank a bunch and came home that way. So I think it just, I'm hopeful that it was a one time thing, and we'll go back to clean. But I don't put a lot of faith in things. And I just, yeah, accept them as they come. Now, Kristen, are

Scott Benner 30:34
you describing a Christmas that's like out of a 90s movie? Like everybody's there, like, you take a big, deep breath, you go in the door like it's gonna be okay, it's gonna be okay. And Dad's on the wagon, and this is great. And then he literally disappears from the house and comes back loaded

Kristen 30:48
pretty much. He hit it a bit, but yeah, how about that? Oh, I'm sorry.

No, it's okay. It's just is what it is, right?

Scott Benner 30:59
Well, I take your point, but it's not okay. But yeah, did this get your brothers and sisters, their brother and sister like they're they having their own issues or, yeah?

Kristen 31:10
I mean, my brother's pretty chill. He's He's off living a bachelor life. I think it was a little different for him too, just because when he was there, they kind of loosened up a bit when it was just him. My sister definitely had some, you know, issues with perfectionism and the same stuff and other things. Yeah, yeah,

Scott Benner 31:32
oh, geez. Okay, well, then the eating disorder is not a surprise. When's the last time you thought of yourself as struggling with it? Or is it always a struggle?

Unknown Speaker 31:44
I would say

Kristen 31:45
probably. Last time I intensely struggled with it was college, but I haven't dealt with it to the degree that I needed to seek outside help since then, I think because I was shying away from outside help, but I haven't really dealt with it too badly since then, and definitely not since having my child.

Scott Benner 32:07
You've been okay. That's great. Can I ask you a question about shame that I don't understand? Yeah, you ever kill anybody? No, no. You ever sell a child heroin,

Kristen 32:19
no. You

Scott Benner 32:20
ever hit somebody with your car and take off? No, what

do you what are you ashamed of?

Kristen 32:24
I don't really know. I think it's just one of those things where it's like my own existence sometimes just feel shameful.

Scott Benner 32:32
I like the way you laugh through it. You get what I'm saying, or you went to college, you got a degree,

Unknown Speaker 32:37
yes. Do you use it?

Kristen 32:40
I'm a stay at home mom. Now I did use it, okay, yeah. I

Scott Benner 32:44
mean, you weren't using it to, like, make money by turning baby lambs into oil or something like that, right?

Kristen 32:49
No, no, okay. I was working at a law firm, though, so well,

Scott Benner 32:53
then you were the Devil. I didn't realize, never mind, you deserve all the shame. Chris, no, no. But, I mean, you went you learned something, you you know, applied to trade, you met a person, you fell in love, you decided to have a baby. You're taking good care of them. You have diabetes. You're taking care of that. I mean, it's fascinating, isn't it? Like, I'm not, I'm not like holding you to task on it. I'm just, it's fascinating. You buy as many accounts as I can count up in a half an hour or a reasonably decent person, and yet you're ashamed of your own existence. Yeah,

Kristen 33:25
and I think that it's something that I've definitely worked through a lot more, and especially since having kids, have tried to really work through on my own a bit more. But I think it's just I'm somebody that kind of takes in whether they're even directed at me or not the ideas of other people, and if there's judgment around things that I'm doing or not doing, I internalize that a lot.

Scott Benner 33:50
Were you shouted down as a child?

Yeah, okay, okay, all right.

I mean, I mean, we got the picture. I think we all know what's going on, yeah, yeah, and you're on the other side of it, which is nice, because, you know, we're not talking about it while it's happening to you, which is right, yeah, because you can be a little free and easy about talking about it. So I'm going to ask a question about having a baby. Yeah, you make that first baby on purpose. Very much. So, yeah, all right, and then, so I must, I ask because I'm assuming there's lead up in thought about it. And so you want to have your own children, is that in the back of your head, like, everything I've been taught about parenting is definitely going to mess up my kids, so I have to do something like, how do you know you're going to be okay to do this?

Kristen 34:36
I think for sure, and I think that perhaps because of my upbringing, I shy away from, like, screaming conflicts, things like that. So even with my husband's night marriage and our relationship, we talk things through. We never insult each other, we never scream. So I knew that I could handle that part, which also made me think that, okay, we sat down, we could talk about how. We wanted to parent our children, what we wanted to take from our parents, and also a lot of what we didn't want to take from them. And I think being able to kind of look at it more analytically and look at how we actually want to handle things was helpful. I think that in practice, obviously things are harder, but I never feel like I'm going to be screaming at my child, I've never done anything that made me feel that way, so I feel like at least I can make enough changes to have a more positive upbringing for him. Kristen, when

Scott Benner 35:30
your husband does something dumb, and we know he does because he's a boy, so when he does something dumb, do you want to scream and you keep it inside? Or it's not your first thought.

Kristen 35:40
It's not my first thought, Oh, very cool. Good for you. Yeah, yeah, it's excellent.

Scott Benner 35:43
And did he grow up in a similar way?

Kristen 35:46
He grew up in a different way. So he definitely was somebody that had a lot more leniency around him, but his parents were divorced when he was a little older, so I think that he did have, he saw like an unhealthy relationship, but he also didn't have parents screaming at him, or he didn't have, like, ballistic chores and all that type

Scott Benner 36:07
of thing. Oh, it was your your job to do their job, huh? Yeah. I mean,

Kristen 36:11
in high school, there were medical issues going on in my family, but, like, I'm the one that cooked dinner every

Scott Benner 36:17
night, every night. Yeah, they made the girl with the eating disorder make dinner. Yeah, interesting. Did they know you had an eating disorder before the lead up to the therapy? Or was it like dropped in their lap, all out of nowhere?

Kristen 36:31
I think that they partially did, but I think that the way they kind of approached it wasn't super helpful. So it just kind of worsened. And then, yeah, we moved from there, Irish, yeah, Irish, German, English, all the white European things.

Scott Benner 36:50
I don't know if people are impressed when I do this or not, but is the husband Catholic too?

Kristen 36:55
No. So he did not grow up Catholic. He was baptized Catholic. Did more Luther and didn't really do much church growing up.

Scott Benner 37:03
Did you go to a lot of church

Kristen 37:05
every Sunday? But

Scott Benner 37:07
it was that kind where everyone agreed we don't want to be doing this. We're doing it because we're supposed to. Yeah, I usually didn't. You weren't there going, please tell me a little more about Jeremiah. It wasn't like that for you. No, no. How about your parents? Did they go with you? Yep,

Kristen 37:22
yeah, they

were there. So, I mean, they're very much church every Sunday. People still,

Scott Benner 37:29
yep, it's working. Great. Sorry,

Kristen 37:33
no. I mean, I do go to church now, but I feel like it's a very different relationship to it,

Scott Benner 37:40
yeah, yeah, okay.

Is it a place where you feel like, does it make you feel a certain way being there?

Kristen 37:47
I guess, I mean, I'm not incredibly religious myself, but I think that it's almost like a comfort thing for us to go, yeah,

Scott Benner 37:58
that's what I'm wondering. Like, I'm like, I mean, I'm not making a judgment about God or church or anything like that. I'm just saying, like, is it a place where you Is it a place where you feel comfortable, so you're doing it for comfort, like, or is it a place where you're like, I'm gonna take my kids to this and we're gonna do this right. This time, my parents got it wrong, but I'm gonna do it right. Yeah, I

Kristen 38:17
think that it's partially a comfort thing. I think that for us, it's like a nice way to kind of pause in the week, so we like to use it for that way. But it's definitely like a comfort thing. But I'm not like doing all the side things to church. We go to our weekly mass and

Scott Benner 38:34
you're out of there. You're not making cookies for anybody. I gotcha? I brought kugel. Nothing like that. No. Okay, what a poll Kugel, you know, never mind. So when you decide to make this baby, sorry, it took me 10 minutes to get back to that. When you decide to make this baby, your blood sugars, you're on a you're on a pump. Where's your 1c is there adjustments to be made before pregnancy? How did that pre planning go?

Kristen 38:59
Yeah, so I started planning fairly well in advance. I had been married for a few years before we had a kid. I started thinking about it when I was in the sixes, my a, 1c, and then I got the Dexcom, which helped quite a bit. Before that, I was using the Medtronic sensor for a bit, which, at the time, wasn't a super great one. I was just checking my blood sugar like 20 times a day to try to keep it in line. Yeah. But once I moved to the Dexcom, then I started moving more towards the lower sixes and eventually into the fives. But that kind of also coincided with finding the

Scott Benner 39:39
podcast, is it? Oh, wait a minute. Oh, I see this is church. I got you okay? I was gonna say, like, sixes are nice, that's fine. Like, all good, and you're not eating. Or are you now? I guess I should ask, like, is your eating schedule much different? Are you taking in a lot more calories and carbs, things like that?

Kristen 39:59
I. Yeah, I eat whatever, whenever, pretty much at first, when I was trying to get my blood sugars in line, I did try the low carb thing, and I truthfully made myself quite sick with it. I felt like I had a stomach ulcer. I just felt horrible. And I think that starting that type of thing for me wasn't healthy, because it brought back all of the eating disorder feelings, and I quickly spiral. Oh,

Scott Benner 40:25
no, kidding. Oh, that makes sense. Yeah, you weren't doing, like, like, I've seen somebody people like, I'm doing low carbon. They're like, frying up, like, ground beef and stuff. It's all greasy and like, that was that what you were doing?

Kristen 40:37
I was doing, like, if I ate a snack, it was usually, like cucumbers with some cheese, and I wasn't doing, like, very high fat, like greasy meats. But I think just the adjustment for my body, I just did not feel good. Well. For you, I feel like I like to have some carbs. Cool, yeah. So for me, it was just especially mentally, it was a lot better once I figured out how to do things with insulin and being able to eat more freely.

Scott Benner 41:04
I was at the store the other day yesterday, and there was fresh bread being made. I didn't even want it, but I bought the whole loaf. I took it home. I took one slice out of it, put butter on it, sprinkled a tiny bit of pink sea salt on the butter, and I ate that. Yeah. And I was like, there, I don't even know. I don't the rest of this loaf of bread, whatever. I just want to do that. Really lovely. Yeah, my son goes, Are you eating bread with butter on it? I was like, Don't judge me. And so, yeah, I mean, it's fantastic, as I'm talking about now, I'm thinking, maybe I'll make a piece of toast to go with my eggs after we do this. Oh,

Kristen 41:38
amazing. Yeah, no, I like carbs, you know, you're

Scott Benner 41:42
gonna have a baby. You know, you got to bring the a 1c, down. Where do you know that from? The Doctor, tell you?

Unknown Speaker 41:47
Or yeah, I

Kristen 41:49
had done a lot of internet research, so I knew that. And then also I started mentioning it to my doctor again. I started planning for this probably over a year before we knew we were going to try, because I want to give myself time to get things in order. So I knew the goals, and I probably knew the goals even before then, but it just seemed impossible before that to get an A 1c below six.

Scott Benner 42:12
Okay, yeah, just impossible because you didn't understand what you were

Kristen 42:16
doing exactly. I mean, growing up, my agencies were very bad, so I think once I was in college and I got my ANC into more of the sixes, sevens, I felt like that was amazing, and it was an amazing step from where I had been, but getting it below that just seemed too hard. Okay.

Scott Benner 42:35
Hey, 25 years, like, how long would you say your blood sugars have been better managed, like, three years, maybe four.

Kristen 42:43
I mean, actually, truly better managed, I would say that long, yeah, having a good understanding and lower variability and all of that. Again, it got better when I was probably like, I don't know, maybe eight years ago or so once I went to college, maybe even 10 years ago, but it was still too variable. Then, yeah, can

Scott Benner 43:04
you measure that with a one CS for me? Like, prior to college, it was more like it was,

Kristen 43:08
I mean, the my best a one CS growing up were when I had my eating disorder, because it was in the sixes, probably just because I was low all the time. But before then, like, middle school, high school, my ANC was eight. I remember the worst was 13. Yeah, it was not good.

Scott Benner 43:27
Did you experience DKA often as you were growing up?

Kristen 43:30
No, I actually never went to the hospital for DKA. Okay, I don't know if I was actually struggling with things again when I was disconnected overnight from my pump. I don't think that was probably great, yeah, but I never went to the hospital for DKA, and I never had a seizure from a low

Scott Benner 43:46
you disconnected for overnight. I

Kristen 43:48
did when I was in the eating disorder because I didn't want to go low. And I felt horrible, but I think, yeah, I just didn't realize what was going on. I didn't understand the need for insulin. If my blood sugar was Okay,

Scott Benner 44:03
gotcha so numbers, okay, I don't need insulin because insulin is to make the number better.

Kristen 44:08
Yes, that was my understanding at that time. You

Scott Benner 44:10
were really lucky. You didn't like you didn't end up in DKA. That's crazy. Yeah, would you just wake up in the morning and put it back on? Yeah,

Kristen 44:18
I would look up, check my blood sugar. What would it? Put it back on in the morning. How high? Honestly, I mean, probably two hundreds. Growing up, I didn't it was probably it was pretty okay for me to have a blood sugar in the three hundreds. Just happened. Two hundreds just happened. If there was a one in front of the number, it was awesome. If it was under 100 low needed to be treated. So there's that understanding of diabetes that I mean, that's why my a 1c was not good.

Scott Benner 44:50
So do you find the podcast prior to pregnancy?

Kristen 44:53
I did. I found it when I was at the beginning of covid. So 2020, Hmm, everyone was home.

Scott Benner 45:01
Is one of these babies named after me? Or no, I'm

Kristen 45:04
sorry, I had to name him after my husband. This.

Unknown Speaker 45:07
I mean, what did he do?

Kristen 45:08
Boy, so one

Scott Benner 45:11
day, one of you is going to name a baby after me, and I swear to you, I will spend a week with a smile that goes from like the side of my head to the other side of my head. I will tell everybody that I see, my wife will eventually look at me and say, Will you shut the up and stop talking about that? And that's when I'll know I've got two more weeks of talking about it.

Kristen 45:32
I mean, we haven't chosen a name for the next one, so I'll put it in

Scott Benner 45:35
there. May I be honest, it's a terrible name. Don't bother it's so, like, short and not melodic. And you know what? I mean, just doesn't work. And a handsome Scott and a not handsome Scott doesn't work too. You don't want to have, like, I mean, I don't know what you look like, but if you have, like, one of those little dumpy looking kids, and it's gonna be terrible, just pick something you like, you lean in towards anything. We have some

Kristen 45:59
ideas, but we're not, we're not settled yet. Too early. Too early.

Scott Benner 46:04
Okay, yeah, we have time. Your husband know anything about your type one? Yeah, he does.

Kristen 46:09
So we've been together for quite a while now, 12 years.

Scott Benner 46:14
Oh no, I spell you out as, like, getting, like, married early, for sure.

Kristen 46:18
Oh yeah, he was my first boyfriend, and yeah, you were like,

Scott Benner 46:20
This guy's nice, I'm getting out of here. No offense to him. I'm sure you love it. But yeah, for sure. I was like, this girl was getting married at her high school graduation. She's like, I gotta get out of here. Yeah. Okay,

Kristen 46:33
yeah. So we've been married for five and a half years, though,

Scott Benner 46:36
does he know that, or does he think he just swept you off your feet?

Kristen 46:41
You know, we get along well,

Scott Benner 46:45
Oh, I love thinking about younger people here and stuff like this, and going, Wait a minute, what? And I also like thinking about older people going, yep, it works. It

Kristen 46:56
worked out. It all worked out. Of course,

Scott Benner 46:58
it'll be fine. So you guys have been obviously together for very long time, so he knows about it, but you didn't really know about it till three years ago.

Kristen 47:06
So yeah, so I think that I wasn't really open with him about it too much before. I mean, I mentioned it to him on our first date. I think I just told him that I was type one, just because I was afraid that that, you know, was a deal breaker. But then I think he just knew, like, Oh, if I'm low, sometimes he would help me get juice, things like that. Yeah, it was. It wasn't until the pregnancy that I've really started being more open with things and talking about blood sugar and the smaller decisions behind it, just so that he could kind of get a better understanding. And he does follow my Dexcom now, not closely, but you know, if I'm, like, passed out or something, he would probably

Scott Benner 47:48
know about it. Sure he'd probably call 911, for me if that happened, right? No. You know, as

Kristen 47:51
soon as I get a text, it's like, it says you've been, like, 40. I'm like, That's a new sensor.

Scott Benner 47:55
That's not real. Leave me alone.

Unknown Speaker 47:58
Yeah.

Scott Benner 47:58
Does he like, accept that? Because when Arden says to me, I'm not really low, I go, I think you should test Are you sure? She's like, leave me alone.

Kristen 48:05
He accepts it. Then when he doesn't accept it is at night, if, because I've can sometimes now that I'm tired with a kid, just sleep through lows. And he's like, are you okay? And he used to accept it when I'm like, Yeah, I'm fine. And now he knows better than to do

Scott Benner 48:19
that. Well. Now he's like, I don't want to raise this baby by myself, so she's got to

Kristen 48:23
be like, please wake up.

Scott Benner 48:24
It's a lot of trouble with the cars and everything. I don't want to get up at five o'clock on Saturday play with that kid. Yeah, I'm sure the kids lovely. Okay, so you find the podcast around covid. I was on fire around covid. That's when I was like, I'm going to make more and more and more episodes. Now. I just do it like I don't even think about it anymore. But so would you get into the Pro Tip series?

Kristen 48:48
I started with just the pregnancy series. I was a slow starter. Now I'm pretty much a daily listener. I listen to everything. Thank you. But I started very slow with everything.

Scott Benner 49:02
Just focused on this one idea, I'm gonna have a baby. I want to get my stuff together better and have a nice, healthy baby,

Kristen 49:08
exactly. So I listened to that. And then I think I listened to one about the Medtronic pumps. And then I very slowly start to work into the other things. And then after I kind of caught the bug, then I started at the beginning and started listening through that way, and

Scott Benner 49:23
you like me, you seem like a person who wouldn't like me. No, I

Kristen 49:29
Yeah, no. What I struggled with at the beginning was, for me, it was hard having a non diabetic talking about it, because I was focused on struggling to get myself in where I needed to be to have a baby. So just hearing parents talk about it was harder for me, but then I quickly got over that Kristen,

Scott Benner 49:49
I got online the other day, type one. What is it called? You're younger, you'll know this. What's it called when you throw shade on somebody, but in. Directly. Do you know what I mean? Somebody was calling me out online for not having diabetes, but they wouldn't use my name or tag me. Oh, what is that called? I'm

Kristen 50:09
not very hip.

Scott Benner 50:10
I'm not very hip. I'm married young.

I know how the Netflix works. Scott,

Kristen 50:21
I don't go out. Do

Scott Benner 50:24
you want to hear about the

my vacuum cleaner comes apart in two parts so I can walk up the steps with it. It's not too heavy.

Kristen 50:33
I just got one like that. Lovely.

Scott Benner 50:38
Do you know you can leave butter out of the counter? It doesn't go bad. Scott, yeah, I've heard all right, so there's this thing, by the way, anybody who doesn't use the way the French store butter, it's in a crock but then it hovers over a thin layer of water that keeps an air barrier, and so you have room temperature, spreadable butter, but it doesn't go bad. If you don't know what I'm talking about, please, please educate yourself there. There's my butter. I've now

Kristen 51:06
said butter, so that's what my social media is, that type. Oh, that kind

Scott Benner 51:09
of okay, so you don't so anyway, there's that thing that people do when they want to talk about somebody, but they don't actually say it to them. I know there's probably some people that they're probably just yelling in their cars, but it doesn't matter. So someone does this online, right? And it's all about like, you know, does it bother you that the most popular diabetes podcast is run by somebody that doesn't have diabetes, and where most people would be like, Oh my god, like somebody's speaking ill of me. I was like, Oh, it is the most popular diabetes podcast. Thank you so much. So um, a couple of lovely listeners, like, tried to come in and, like, you know, be supportive. And one of them tagged me along the way, I think. And I did not respond like, I'm an adult. I don't give a shit about that. Yeah, so I was, I just ignored it. It is interesting, though, like that, I because I don't, I don't even feel badly about the I don't know who the person is, obviously, but I don't feel bad. Also, I did look at the thread because I was tagged in it, and the person who made the post clearly has to listen to the podcast. Like, there's no way they would know things about the podcast that they were saying if they didn't listen to it. Because they were like, anyway, that's not the point is, is like, I felt bad for the person, because what does it matter, right? You know what I mean? Like, I get that, like, I understand when people say it's off putting sometimes, like I genuinely do, but in the end, like, what does it matter?

Kristen 52:31
And, yeah, that's definitely what I came to. I think that for me at the very beginning, because, again, I was struggling so hard with an adult issue. As an adult with diabetes, when I was hearing parents come on say, Oh, it's so much harder for us, I was like, my parents don't even know what's going on now. So that was like a struggle for me. But I've heard so many different stories and so many different perspectives at this point that, I mean, everybody's just sharing their own, yeah, if you

Scott Benner 53:00
want my perspective on it, why it's popular, besides, I'm delightful. The the rest of it is that I have a dispassionate view of the stories. Like, you start telling me something, and I'm a third person. Like, I'm a third party. I'm like, wow, that's interesting. Like, tell me about that. How did that happen? Like, but if you have diabetes, you're gonna have feelings that connect to what some people say, and you're going to go, oh no, I understand. And then you're going to validate them, and you're never going to get deeper or it's not going to be your experience. And you're going to say, well, this is what I find. And you're going to have one of those boring conversations where it's like, well, this is what I think, this is what I think. I even think that's what happened with the management stuff. I haven't talked about this in forever, but because this thing was happening to Arden and not to me, and I was the one charged with fixing it and keeping it from happening again. I wasn't low when she was low. I wasn't foggy when her blood sugar was 300 like I was the one who was like, I can just work this problem and figure out steps to keep this from happening again. Listen, anybody can be good at this, right? Or anything, anybody can be good at anything, but I had to be. So I wasn't gonna let that happen to my daughter. You know what I mean, like a 300 blood sugar, like, I wasn't gonna let that happen. Her running around low all the time. I wasn't gonna let that happen. I wasn't gonna let her develop an eating disorder. I wasn't gonna let her, you know, have all the other things that can happen to people with type one diabetes, if I can help it. And so I had to step out of the whole thing, see big picture and make decisions. So whereas that person was mad at me for not having diabetes, I would tell that person, you're welcome. Because, you know, I spent a lot of my life figuring this out so I could learn how to talk about it. I will say this in case they hear this. And obviously they're going to hear it because they listen, which is, now they can't talk about me anymore, because now they'd have to admit that they listened. They said this thing that wasn't true in the post. And there was part of me that was like, I should I would like to tell them that that's not true. And. I thought, what is that gonna matter? They're just not gonna believe me or anything. But they said that I get preferential treatment about devices for my daughter. And that's not true. Every device we have, we pay for with our own money, through our insurance. If they think OmniPods like, Hey Scott, hello, the OmniPod blah, blah boss coming out now, here's a whole box of them. That ain't how that works. I go to my doctor and I get a prescription and I wait like everybody else right now. You want to be mad at me for having good insurance, that's another thing. But like, there's no one at any one of these companies who has ever pushed me to the top of the line for anything, because that's not even a thing they can do. Yeah,

Kristen 55:39
I don't think they can wheel and deal prescriptions on the side. Oh, no,

Scott Benner 55:42
listen, no bullshit. Like 10 years ago, OmniPod came to me and they said we would like Arden to be like, an like, wear the pump, like, be an ambassador, or something like that. And I was like, Well, this is the long time before the podcast, so it's even back longer. God, I can't remember my own life. It's got to be 15 years ago, maybe. And I said, I have insurance. I paid $20 for the insulin pumps. Like, I don't need like, I don't need product. You know that, you know. And by the way, I know plenty of bloggers that were wearing free insulin pumps back in the day. My kid's not one of them. And I said to them, though, like, since you're willing to give it to me, why don't we just pick a person that reads my blog that's in need, financial need, and you can give them Arden's pods that the ones you wanted to give to her. And they said, Oh, that's a great idea. And a month later, they came back to me and they said, We can't do that like they could not between the legal department and the people I was talking to, they could not figure out how to accomplish that. So it never happened. I've never taken I mean, I think I have a free contour meter, but ever you all get them in the mail, yeah, because of me, and you're welcome. I thought that was funny. I was like, somebody made a podcast that's so popular about type one diabetes that it's actually helping people in mass, and this person wants to be mad at me for it. I was like, That's really fascinating. Kristen, this is the last thing I'll talk about about the podcast. But this morning, the podcast is number nine on Apple podcast chart, United States for medicine. It's up there with like Rhonda Patrick's found my fitness and Peter Attia drive and Dr Mike Heyman and names that like people know, like it's even up here right now with a podcast that Pfizer is pimping out, which means they're paying some PR firm to push their thing up on this list. And I'm only four spots behind them, so I'm the only podcast in this top 10. It's just a person. It's not a company. There are other diabetes podcasts. They don't chart anywhere. Like, nobody listens to them in any great mass. The other day, I put a post on a Facebook group, and I just said, Hey, how has the podcast helped you? There's 150 testimonials in it in 48 hours. Like, yeah. Just say thank you, yeah. What I mean. Like, that's how I feel in my heart. I never say that out loud, although I have said it here on the podcast now, so now somebody's gonna know. I think when somebody does that to me, I'm like, Oh, my God, you're welcome. Like, Kristen had a healthy baby. I don't want to say this out loud because it seems indelicate, but because of me, like, right? Like, so just, why would you be pissed about that? I don't know now. You made me upset. Kristen, are you happy?

Kristen 58:25
I'm sorry. No,

Scott Benner 58:26
you're not. You listen, you're thrilled. You're like, Go goodies, ranting and raving about something

Kristen 58:30
I was looking forward to, what mine would be.

Scott Benner 58:34
Anyway, I do want to hear about the pregnancy, though. So first in trimesters, did it break up? Like, the way Jenny talks about it, or what was your experience first time?

Kristen 58:43
Yeah. So when I started, it was, I was running quite high, which is kind of the first symptom of now, of all of my pregnancies, has just been really high blood sugars. And then from there, it goes into the lows for the first trimester, which is where I'm at now, right? And then for the second trimester, is when the resistance started creeping in a bit, around 1516, weeks, and then just until the end of the pregnancy, pretty much just adding more and more and more insulin. What's

Scott Benner 59:18
the swing at the beginning, for example, what's your basal, what's your carb ratio, and what is it by the end,

Kristen 59:23
I think that my basal is probably went up like 30% or so. Okay, right from the get go, carb ratios went up a bit as well. So I usually am like a one to 10 person around there, give or take, depending on the meal. Okay, so I dropped it to like one unit for eight carbs, somewhere around there. And then once I'm starting the lows, it maybe moves towards one unit for 12 carbs, again, estimating around there. And the basal also dropped by probably like 30% so it went below my starting. Um, I'm out okay.

Scott Benner 20:00:01
After the baby comes, when do you see the change back? Pretty

Kristen 20:00:05
immediately. I had to have a C section because my son was breech. So pretty much as soon as that was all done, I had my pump settings changed so I could switch right over. And it was close to my starting. It was a little up and down, I think because of healing and breastfeeding and everything else that goes with this, it was a little hard to sort out, but it was at least as low as I started, and I think it was even lower than that. Okay, in postpartum,

Scott Benner 20:00:35
what was breastfeeding like for me?

Kristen 20:00:39
It wasn't that bad. I didn't have, like, drastic lows. I know that happens to a lot of people. I think that just maybe it's because he was eating a lot, it's just all over, my needs decreased, and I always had sugar nearby. But I breastfed him for about 14 months, and I never had any serious blood sugar issues from it. And once I stopped, I think because that was gradual as well, it was more of a gradual increase of the insulin. So I was very lucky. There is there

Scott Benner 20:01:09
any other autoimmune in your background, in your family? Yeah,

Kristen 20:01:13
there's,

I think I have a grandfather with Hashimotos or something, with a thyroid. I don't know the connection. Really, there's a lot of health issues with my parents, so I'm not sure. I don't really think any of them are autoimmune, but yeah, there's not a ton of diabetes or anything like that in my family. You

Scott Benner 20:01:36
want to hear something interesting? This is from the NIH over the last few years, several studies have pointed out that these addictive disorders are associated with systematic and central nervous system inflammation. That feels like a thing I want to read more about. Yeah. I mean anxiety in your family, depression, I would say so. Mm, hmm, okay, yeah, celiac

Kristen 20:02:04
not diagnosed. My mom can't eat gluten anymore, but she never did like the bowl testing for it, so I don't know if it's celiac or not.

Scott Benner 20:02:13
Let's call her celiac. Yeah, any bipolar in the family there is, when am I gonna be recognized for a Nobel Prize of some sort, Kristen? When? Yeah, great. You're making a baby. You don't got any time for that. Seriously, am I the only one saying this?

Kristen 20:02:34
It's the only place I've heard it. But damn right.

Scott Benner 20:02:36
Jesus. How many people gotta come on and be like, Oh yeah, I got a bipolar alcohol, I'm like, Yes, auto immune, something's going on. Pay attention. How many people are gonna come on with, like, addiction stories and like, all right, I'm done. Like, I give up. Like, somebody's got to listen to me. I can't make I mean, what am I gonna do? I'm in the top 10. I can't get any higher. Nobody's gonna pay attention. But I gotta go on one of these other podcasts and pretend to like, you know, how they make each other really super popular. I gotta say something like about Bigfoot or aliens or something like that. And then people listen, right? And then I gotta make some crazy I gotta say something crazy about Berberine and how it heals something. And then say gut lining a couple of times. And then what happens? Then somebody pays attention. I don't know. That's your end. That's my end, trust me, that's the there's two kinds of podcasts, three kinds of podcasts, comedians talking to other comedians, people telling stories about murder, and people using bro science to get people upset and to listen more because they think maybe that would work. That's those are the podcasts that exist, the popular ones? Well, yeah, yeah. There's plenty of other ones that nobody's listening to, but these are, yeah, these are the ones that they grab everybody's attention. By the way, this is just some free advice. I can't listen to you interview your same comedian friend 37 times a year. You gotta figure out something else to say, right?

Kristen 20:03:59
Yeah. I think they just kind of want to hang out with their friends and get paid for

Scott Benner 20:04:03
it's 100% what's happening I'm over here like trying to dig through all your problems, which are some of my problems and some of my family's problems, trying to come to, by the way, the GLP stuff, it's at the forefront of our understanding. What do you see in your lifetime? What we find out about that, that peptide and GLP one and really

Kristen 20:04:22
interesting to listen to, even as somebody not using it, I don't know it's just interesting. I

Scott Benner 20:04:27
am, like, it's a weird i don't want to talk about it with you, because I'm gonna end up saying something insensitive. Like, you should see how thin I am, because I know that's not good for you. It's, it's insane. Like, really insane. I'm almost at a healthy weight. That's amazing. Yeah, I'm just about there last night or yesterday afternoon, I came into the kitchen with my wife and my son, and I was like, here are three bottles of methylated vitamins, and they're like, what? I'm like, we're taking these for six weeks. And they're like, why? I'm like, because it's either bro science or it's real, and we're gonna find out everyone was. Like, what I'm like, Shut up and take those. Everyone stopped thinking, just do what I tell you. I was like, it's not gonna hurt you. And if it and I said, If it helps, it helps, and that'll be great. But even that, I think, is somehow connected to all of this, not being able to methylate folate, of all the ridiculous things, I never thought I'd say out loud, I keep wanting to have, like, a bigger conversation about, like, some supplements. You can't call together enough good information if you don't do it on your own.

Kristen 20:05:31
Yeah, yeah. There's a lot of junk science out there to go through.

Speaker 1 20:05:36
I stuck two bottles in the mail and send them to Jenny. Oh, nice. I was like, here, no pressure, but take this. Take this. Take the pills.

Unknown Speaker 20:05:46
Everyone.

Scott Benner 20:05:47
Shut up and do what I say. Meanwhile, I don't know that anything will come of it or not. Like I'm, I couldn't begin to tell you, you know what I mean, but like it's harmless if it's not. And you know the test to find out if your can't methylate folate is expensive and not as expensive as the vitamins are. So like, let's give it a shot and see. And we were talking to my son's doctor, too, about looking into something during his next blood test. Like, the littlest thing, like, you know, I was talking to somebody, and she mentioned something, and I was like, wait, what? And then I started Googling, and I was like, Oh my God, there's a connection between digestion and this. And I was like, Get out of here. I'm being vague now because I don't understand it enough to talk about out loud, but it makes me like, want to look into things. So Right? And I hope you guys are all trying to help yourselves feel better too, especially with this autoimmune stuff and all the underlying things that are happening to you that you do not know from that inflammation. I know saying inflammation is trite at this point, but you know, if you got autoimmune issues, something's happening that shouldn't be and if we can find a way to fix it, then, you know, good on us, by the way, even anxiety and depression, like if you I, again, I'm not certain that any of this is real, but if I just Google methylation impacts, you end up with, you know, depression, anxiety, digestion issues, like stuff like that. And you're like, Oh, all right, well, let's see. So anyway, looking into stuff, Kristen, now that you're pregnant, the second pregnancy is following the first pregnancy in this first trimester, so far lower needs,

Kristen 20:07:25
yeah, so this is actually my third pregnancy now, oh, I had a miscarriage in November, so I did have one other pregnancy which also mirrored the first trimester. Okay, but yeah, so it has been mirroring it pretty closely, which is convenient for me, because I can follow along and kind of know what to expect. Yeah,

Scott Benner 20:07:50
did they give you any idea about what happened with the miscarriage?

Kristen 20:07:55
It was just random. Yeah, I had all my blood work done. Everything was good. My ANC was very good. It was just one of those things that just spontaneously happened. So I was around seven and a half weeks, so not, not too far. Was that

Scott Benner 20:08:10
nerve wracking when you got pregnant? This the third time, yeah, for sure, for sure, you do that thing, like, where people are, like, this is the seventh week where you like, all uptight,

Kristen 20:08:21
yeah. So I was somebody that always, even with my first pregnancy, I always knew the risks of miscarriage. So I've always been, you know, checking no matter what, and always mindful of it. And I always knew it could happen, and it just randomly happens. But I think that once it actually did happen to me, having the next pregnancy, which was immediately after, because we were trying to schedule things in our lives. I think that having it right after was a little difficult, just to try to work through the loss, while also trying to get excited, but not too excited, about this baby. So I think now that I'm into the second trimester a bit, it's feeling a little better, but definitely still nerve wracking.

Scott Benner 20:09:07
I'm glad you're feeling better, and I hope everything goes well. So it's very exciting to be to be waiting for a baby, that's for sure.

Kristen 20:09:14
Yes, yeah, we're very excited. I

Scott Benner 20:09:15
bet is there anything we didn't talk about that we should have? No,

Kristen 20:09:19
I don't think so I will just say that, thanks to the podcast and everything else, my ANC is a 4.9 right now. So definitely much better from growing up and everything else. So definitely very thankful. Oh,

Scott Benner 20:09:34
good for you, and thank you for telling me that. But that's wonderful. That's a that's a lot of hard work to get from where you were to there.

Kristen 20:09:41
Yeah, definitely. And like I said, I'm not eating in a restrictive way at all and not having any extreme lows or anything like that. So it's definitely been really helpful for me to find you. When I found you, I was, like, I said, it was during covid. We were living in a 350 square foot Manhattan apartment. It was nice to kind of have this to get me through

Scott Benner 20:10:04
over time, Kristen, I'm in a 20 by 20 room. You were in a room that was only 10 feet and wider than this one.

Kristen 20:10:11
My husband was in school, so we were I was working, but we were in student housing, and it was a 350 square foot, actually slightly under 346, square foot apartment in Manhattan, which was nice until covid happened and we were locked in there. Kelly

Scott Benner 20:10:27
and I once looked at a Manhattan apartment. The toilet was in the kitchen, and I think that threw us off enough that we left

Kristen 20:10:32
it was pretty much there. Yeah, you walked right through a tiny the stove didn't even fit a cookie sheet so it was quite small. Oh, I'm

Scott Benner 20:10:44
glad you've you've slid up. Are you still a Manhattan? No, we've

Kristen 20:10:47
moved a few times since then we moved after my husband went out of school to Hoboken, then we moved back to Pennsylvania for a year, and now we moved more south to Virginia. We're here for two years, then we're moving again. So we move a lot. You

Scott Benner 20:11:03
were from pa originally, yes, close to the Jersey border. I was gonna say I Yeah. You got like, a, like, what, like a cinnamon sin, like, right around their vibe, something like that, going on Cherry Hill. Yeah,

Kristen 20:11:17
I'm from the Lehigh Valley. Oh, okay,

Scott Benner 20:11:18
all right. I got you, yeah? Oh, well, then, ha,

this was fun. I appreciate you saying nice things about the podcast. I hope everybody listens. I genuinely believe if you listen through the Pro Tip series, your A, 1c, will be in the sixes in like six months. And like Kristen said, my theory about this is understanding how insulin works. It's not about restricting food or making you eat a certain thing. I believe that people eat the way they're going to eat. I think some of you eat terribly probably. I don't think I'm in charge of fixing that or that. I if I was in charge, I could actually sway you. I think that's the thing people come to on their own. But in the meantime, I want you all to know how to use your insulin so that you can have lower stable blood sugars and better outcomes for your health. And then, now that'll give you some time and some brain space that maybe say to yourself, I don't think I want to eat this cupcake. And then, you know, figure that part of it out too, but, or processed foods, or whatever you're killing yourself with that you don't realize. And that's it like, that's just been my theory. Always understand how to use insulin, apply it to your life. Have better outcomes. Things get better. Yeah,

Kristen 20:12:23
and it's again, that has been so helpful for me and probably a lot of other people that have struggled with the restriction. So very appreciated. Oh,

Scott Benner 20:12:30
it's my pleasure. Obviously not helpful enough for anyone to name a baby after me, but that's fine. Let's not worry about it.

Kristen 20:12:37
I'll let you know if we go there. Seriously,

Scott Benner 20:12:38
if you do it, I'll feel really douchey. Don't do that. Make me feel goofy, and I'd be like, Oh, God, Kristen is too late to change it. Also not for nothing. With your family background, I don't want my name attached to whatever's gonna happen to that kid. So,

Kristen 20:12:54
yeah, you know, no, we're changing. We're breaking cycles.

Scott Benner 20:12:57
I know you obviously are. You're doing a great job. Good for you. Do you feel accomplished?

Kristen 20:13:02
I do. I do. I think that I just feel a lot better. And again, once I was kind of out of the situation and could kind of look at things more clearly, I think that it's just been really nice to be able to kind of attribute things to that and just be able to move on and set up my own life.

Scott Benner 20:13:20
This is, this is delicate, but I'll spend two minutes here. I'll bring up something very delicate. Only talk about it for two minutes. Perfect, as we try to get better generation after generation, right? Like, look back at your parents, go, all right, there's the things that went wrong. Let's try not to do those. Some people fall into it. Keep doing it. You know it. It slows the process of getting out of that cycle, but, but nevertheless, like, what do you think that, like, you know your parents, what is it they're lacking, or what happened to them? Do you know what it is? Can you tell

Kristen 20:13:51
I think that some of it is lacking, some emotional maturity and not really thinking through the consequences of what they might be saying and doing again, like, if there was fights and stuff they were trying to, or a parent would try to, like, get us on their side, and things like that, and just things that really shouldn't be involved in, just a lot of self interest as well. Yeah,

Scott Benner 20:14:17
so an emotional maturity didn't exist. Is there any aspect of this that's intellectual? Are they, like, 15 IQ points away from making a good decision or something like that?

Kristen 20:14:28
No, I don't think so. I mean, they both had degrees and, you know, jobs and functioned in society. I think it was just and I might have been to just their own, like pent up expect, they had a lot of pent up anger and expectations of what should be done, and, you know, it's a personal attack if it's not met. So I think there was some of that

Scott Benner 20:14:52
they have rules if you're not doing what their rules say you're this is you coming after them? And then

Kristen 20:14:58
they Yeah, and then they fight that.

That any idea, if I have something that disagrees with them, then that's disrespectful and no shut it down. Interesting,

Scott Benner 20:15:06
but they're young, meaning like, because you're 28 so this, this means that 25 years ago, they were 25 so in 1999 your parents were 25 it's not like they were brought up during the depression or something like that. You know what I mean? Like, no, this is all religion. Yeah. I mean,

Kristen 20:15:26
they grew up in more of a rural area in PA. So I think sometimes it's, it's not like, you know, living in a more urban area where things are with the times.

Scott Benner 20:15:36
I think, I think you and I are about to say goodbye, and you're about to tell me that you grew up right about where my son went to college, and I'm gonna guess I know where you're at. So, all right, Kristen, you were terrific. This was very honest. I appreciate all of you coming on and being honest like

Kristen 20:15:50
this. But this was, well, I'm not sharing the recording with anyone.

Scott Benner 20:15:53
I know. No, I wouldn't think you are. No, hey, Mom, listen to that. You want to guess if you're the energy vampire, or, if it's dead, oh, did they say it right in front of the other one, like, agree with me? Or did they pull you behind closed doors and do it? It

Kristen 20:16:10
went both ways. You know, they there was no shame in their game. God,

Scott Benner 20:16:15
What the is wrong with everybody? Okay, I gotta go. All right. See you, hold on. You. A huge thank you to Eversense CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the Eversense CGM? You just replace it once every six months via a simple in office, visit learn more and get started today at ever since cgm.com/juice box, 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. Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it one blood test can spot type one diabetes early. Tap now talk to a doctor or visit screened for type one.com for more info. Hey kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy? The private Facebook group for the juicebox podcast. I know you're thinking, uh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community juicebox podcast, type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in, but make sure you're not a bot or an evildoer. Then you're on your way. You'll be part of the family. If you're not already subscribed or following in your favorite audio app. Please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast. Hey, what's up? Everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.

#1279 IDU: Insulin shortage & T1D insurance coverage

Insulin shortage and why is insurance coverage for type 1 diabetes such a crapshoot?

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to Episode 1279 of the juicebox podcast.

On today's episode, Jenny and I, we talk about some stuff that we don't understand. 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 healthcare plan or becoming bold with insulin. I know that Facebook has a bad reputation, but please give the private Facebook group for the juicebox podcast, a healthy once over juicebox podcast, type one diabetes. If you're newly diagnosed, check out the bold beginnings series. Find it at juicebox podcast.com, up in the menu in the feature tab of the private Facebook group. Or go into the audio app you're listening in right now and search for juicebox podcast. Bold beginnings, this series is perfect for newly diagnosed people. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box. You music.

This episode of The juicebox podcast is sponsored by cozy Earth. Cozy earth.com use the offer code juicebox at checkout to save 40% off of the clothing, towels, sheets, off of everything they have at cozy earth.com the episode you're about to listen to is sponsored by OmniPod and the OmniPod five. Learn more at omnipod.com/juice box. Use my links to support the show. This episode of The juicebox podcast is sponsored by the Eversense CGM, an implantable six month sensor. Is what you get with Eversense, but you get so much more exceptional and consistent accuracy over six months and distinct on body vibe alerts when you're high or low on body vibe alerts, you don't even know what that means. Do you ever sense? Cgm.com/juicebox,

Unknown Speaker 2:26
go find out.

Scott Benner 2:28
Jenny and I are doing something new together today. And while she was talking about what we were going to talk about, she got so passionate. I was like, Oh my God, wait. Let me turn the recording on. So Jenny, this is an episode of I don't understand, and I asked you to make a list of things diabetes related that you don't understand, and that could mean anything, right? We're going to do a number of these, so don't feel a lot of pressure. Your list will grow. But your first one was, what tell people what you don't

Jennifer Smith, CDE 2:55
understand? My first one is insulin shortage, right? And we've all, to some degree experience, some type of message coming from our pharmacy or our supply company that's like, you can't get your insulin right now. We are on a shortage, or it'll be around in a month. Check back with us and we'll send it to you, right I experienced it, but it seems to be over. My pharmacy has no issue sending my insulin. I still have people that I work with who are still worried about getting their insulin, because they've been told over and over, there's still a shortage going on. Humorously, saying to you, I'm like, I don't understand. How do we have a shortage, right? This is, this is made in a, let's call it a factory, right? That's kind of how I think about it. We're not, you know, worried about not having enough pig pancreas to grind up and, you know, get the insulin out of anymore. We're not doing that. So where is the shortage? And in my mind, it's clearly coming from some issue that's monetary. It's got to be driven by some monetary. Somebody's not getting enough because we've outsourced insulin production outside of the country and or to countries that aren't getting something back from something that was promised. Like this is where my brain goes with this. Like

Scott Benner 4:12
this is where your conspiracy theories

Unknown Speaker 4:15
jump to.

Jennifer Smith, CDE 4:16
How do we get an insulin shortage? Okay, when we've got plenty of chemicals to make the insulin. Yes, right. Okay,

Scott Benner 4:25
all right, so I'm going to, I'm going to go to chat, right? I actually am. So here's my first questions, where do pharmacies get insulin? Says pharmacies obtain insulin through a supply chain that involves several key players. One manufacturers. Insulin is produced by pharmaceutical companies such as Eli Lilly, novo, Nordisk Sanofi. These manufacturers create different forms of insulin, including rapid acting, long acting and intermediate acting varieties. Okay. Second, they get pharmacies, get insulin through wholesale distributors. Once the insulin is manufactured. Richard, it's sold to wholesale distributors. More pharmaceutical wholesalers in the US include companies like major excuse me, McKesson, AMERI, source Bergen and Cardinal Health. These wholesalers purchase large quantities of insulin from the manufacturers and distributed to the pharmacies. Okay, so the chain goes manufacturer, distributor, pharmacy. Then there's retail pharmacies, including chain pharmacies like CVS, Walgreens and Walmart, as well as independent pharmacies. Purchase insulin from the wholesaler. The pharmacies then dispense the insulin to patients based on prescription for Okay. Supply chain logistics. Throughout this process, the supply chain logistics involve ensuring the insulin is stored transported. So there's it's making the point that there's a lot that has to happen here for it to be stored properly and transported properly. Sure. And then Pharmacy Benefits managers and insurance companies often play a role in determining which insulin brands a formula formulations are covered. Okay, that doesn't have anything. Well, it does say it impacts what brands and formulations are covered under various health plans, influencing what pharmacies stock. So

Jennifer Smith, CDE 6:11
okay, and my understanding of the shortage was primarily shortage of vials. I understand that people were very, very able to get pens.

Scott Benner 6:23
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. This is from a listener. Thank you for introducing me to cozy Earth for my birthday, I bought stuff to update my bed, sheets, comforter and a blanket. It honestly made our lives better. My husband and I used to have a conversation in quotes every single morning about who pulled the covers so far to their side, or how we were too hot or too cold. That never happens. Now, both of us sleep better and more comfortably, and don't get me started on the clothes you all should just try one piece. Use the offer code juicebox at checkout at cozy earth.com and you will, in fact, save 40% off of everything you put in that cart cozy earth.com use the offer code juice box at checkout.

Jennifer Smith, CDE 8:37
But the shortage was from a vial standpoint, which, for the majority of people who then use pumps, they're filling a pump from a vial. You're not filling it from an insulin pen. So therein, you know, lies the question of,

Speaker 1 8:53
I understand how it

Jennifer Smith, CDE 8:57
navigates through in production, but like a shortage in my brain is, oh, there just were not enough strawberries in the field to supply 20 people who wanted them. We only have enough for 10 people today because the strawberry genie came and couldn't do his job, right?

Scott Benner 9:16
So maybe it's files we're going to find out. And it says here, and by the way, I want to be clear for people, because this is a newer series. We did not look into this beforehand. This is us figuring it out right now. That's why Scott's reading online talking and I'm reading, okay, so let's back, like back engineer this if you live in a town where a lot of people work for a certain company, and that insurance company covers Humalog, and you work for a different company, and your insurance company covers, I don't know, Nova log, right, but you're the only one in town who gets Nova log, then maybe this pharmacy would stock less Nova log than Humalog, because the people in the so there's, there's a component to that. That I understand. But let's see, the recent insulin shortage has been primarily caused by a combination of manufacturing delays and an imbalance in supply and demand. Eli Lilly, one of the major producers of insulin, announced a temporary shortage of two of its products, 10 milliliter vials of Humalog and insulin list pro the shortage is expected to persist until at least the beginning of April 2024 so this is a thing that's happened in the past, and most people are cleared out now. This is why you hear somebody jump online. They're like, Hey, I went to the pharmacy and they told me there was an insulin shortage, right? Okay, now that's the first problem, you're listening to a 19 year old person who's working at Walgreens, and you're getting and you're like, oh my god, there's an insulin shortage. Becky told me, Becky was smoking weed behind the Walgreens 20 minutes before that. Just keep that in mind. Okay, as you're getting your your medical information from her, she's literally sitting there like, I want to go out and see a movie tonight, and she told you there's an insulin shortage, and now she knows

Jennifer Smith, CDE 11:04
nothing about it, other than what was written on the thing for her to tell customers. Now in the morning, she

Scott Benner 11:09
doesn't even understand the feelings in her own heart. Yet she's so young, okay? Or he doesn't matter to me, several factors contributed to this sort of shortage. Firstly, there was a brief delay in manufacturing at Eli Lilly. Additionally, the dynamic nature of insulin supply and demand has further complicated the situation leading to these products being out of stock at wholesalers and some pharmacies. So the pharmacy is telling you, I can't get the insulin, there's a shortage, but they mean they can't get it from their wholesaler. They don't know that. It means that the company hasn't gotten into the wholesaler. Not that that's probably not what happens. But do you know what I'm saying? Like, where? Where's the sticking point? Where's the break? Right? Yeah, this shortage has forced many patients to seek alternatives, such as switching to a different brand or type of insulin, which can be challenging due to insurance coverage and prior authorization requirements. Yeah? Because you'll hear people say all the time, like, well, just use this one. They all work the same. Yeah. Well, I'm, you know, I'm not buying crayons. Like, I can't just pick up the the cheap ones and go, I'll use these for a while. Like, right? Yeah, so you've got to, but that there is a pathway to that. Call your doctor. I can't get Humalog, etc. Can you write my script for this? I mean, but who knows? Like it is scary now,

Jennifer Smith, CDE 12:22
well, and the main reason, as you read, is manufacturing, right? So it starts with manufacturing. So then, yes, down the line, the consumer being the end of the line, the user is the one who sees the problem, whereas where is the manufacturing? But what did people not come to work. These are my big right? Did they lose a lot of employees? Did they not get paid? So they had to lay people off, and so now there's not enough people to make it, right? Manufacturing, I'm trying to

Scott Benner 12:54
find out right now. I asked our overlords, and I said, What was the manufacturing issue? Be more specific. Actually, I wrote Pacific, but it figured out what I meant, brief delay in manufacturing. Yeah. I mean supply constraints, wholesalers and pharmacies, Eli Lilly is actively working. Yeah, see now it's just getting to like press. Tell you

Jennifer Smith, CDE 13:16
only what Yeah, can tell you.

Scott Benner 13:18
Tell you what Eli Lilly said out loud is what it can tell you the situation has led to, yeah, okay, obviously, was it a vial shortage? Oh, it says yes. The recent insulin shortage involved a specific issue with the availability of the 10 milliliter vials. Eli Lilly reported that these particular vials would be temporarily out of stock due to a brief delay in manufacturing. This affected their supply chain. Yeah, well, I mean,

Jennifer Smith, CDE 13:44
like, isn't that right? So if you can not get vials as easily, but you can get pens, it's not the insulin in and of itself. Did they not were they not able to make enough glass to put the vial Right? Like, what is the what is the problem? I

Scott Benner 14:00
just asked Mike, how could we run out of glass vials, right? But it says raw material shortage. I mean, it's going over ways that could happen, capacity limitations, quality control issues, yeah, so there is that, right? There are times that these companies make stuff and they gotta trash it, you know, sure there's that you can get, you know, something's contaminated, or whatever they they'll blow out the whole run and throw it away. And

Jennifer Smith, CDE 14:25
understandably and thankfully, that they're looking at that for, obviously, something you're putting in your body.

Scott Benner 14:31
Yeah, no kidding. So, but what did you hear from people? Like, just, was it just, I can't get my and how long did it go on for? For

Jennifer Smith, CDE 14:39
quite a while? Like my personal was I had called for, I mean, I've got a pharmacy that ships to me, and so I do it all through my electronic medical record. I just say, hey, I need to refill my prescription. Yeah, they send it off to me. And so I actually got a physical phone call back from the pharmacist. She was like, you know, do you. Enough, are you okay? Or are you just refilling to keep up with your refills? And I said, I'm okay. I just want to keep up with my refills. And she was like, okay, because she said, right now we don't have your stuff. She said, we're looking at being able to have it within about a week, is what I was initially told. Well, it took about three weeks for me to finally get and some people it was longer than that. And that's where, you know, there are more questions than about that. Why were why were some people further delayed compared to other people? Why did some people not even know about it or not really have any issues? Was it because they had enough, and they just don't refill as often because they have enough supply at home. But it was from, I want to say, somewhere early April, definitely, through June. Yeah, I was still hearing issues in June, of people being very careful about their insulin because they were traveling with it and everything with insulation so that they didn't have to start up their reserve bottles and that kind of stuff.

Scott Benner 16:05
So I saw somebody recently online. There's a picture that says, What did it say? It was a little plastic like Tupperware container. Tupperware is not a real thing anymore, but you know what I mean? Like a little plastic container? God, how old am I? I'm like, I'm

Jennifer Smith, CDE 16:18
Tupperware parties. My

Scott Benner 16:19
mom had them. I'm referencing food storage devices that don't exist anymore. Oh, I must sound like my grandmother, okay, it said Armageddon insulin on it. Yes, I saw that, right? So whoever put that up? I thought that was brilliant. So basically, if they have insulin that dates out, they don't get rid of it. They stick it there in case the zombies come, because they can still give it a try. And I was like, Oh, right on. Never thought to do that. But I also don't throw away. I mean, I just use it up till it's gone.

Jennifer Smith, CDE 16:50
I think I last threw away, like my basal insulin, right? That I keep on hand, yeah, always refill it, you know, whenever it's expired or whatever. And I was cleaning out, maybe it was, I don't know, January or something, this year, and I came across a vial of my basal insulin that was like five years old. I could probably get rid of this one, because I have two more vials in here that are not used either.

Scott Benner 17:16
We just threw away, I'm not lying to we just threw away syringes that were, it was, my God, it was, I thought it was filled in 2014 the prescription. I was like, I don't think we're gonna use these. We can get rid of these. Hey, here's something interesting. I asked chat, G, P, t4, oh, have pharma companies been building more manufacturing for insulin and glps? Because I heard something about that. Oh, pharmaceutical companies are indeed ramping up their manufacturing capacities for insulin and GLP drugs to meet the growing demand. Eli Lilly has made a significant investment to expand its manufacturing capabilities. Recently, the company announced an additional $5.3 billion investment to build a massive manufacturing complex in Indiana, oh, aimed at producing active pharmaceutical ingredients for its diabetes and obesity drugs, including Manjaro and zepbom, the investment of Vi Oh, it sounds like they're just gonna sounds like they might just be doing it for this. But hold on a second. Novo Nordisk is significantly expanding its manufacturing capabilities of companies investing 2.3 billion to upgrade its production sites in Chartres, France, I've definitely mispronounced that, to increase capacity for current and future drugs, including jlps. Additionally, Novo Nordisk has allocated 6 billion to expand its manufacturing facilities in Denmark, focusing on increasing capacity for active pharmaceutical ingredients, including semaglutide. They're throwing a lot of money into glps, is what they're doing. Yeah, yeah. Eli Lilly has announced a $72 million investment to build out insulin manufacturing capacities at one of their facilities in Indianapolis. This is part of a broader $1.1 billion investment to expand and upgrade their US operations. Additionally, Lulu has earmarked 5.3 billion for a new manufacturing complex Indiana. We heard about that. So, yeah. So it looks like they're doing all that. Also, it says here a South Korean pharmaceutical company is investing $100 million to build an insulin manufacturing plant in West Virginia.

Unknown Speaker 19:26
Okay, interesting, that

Scott Benner 19:27
makes sense. The facility is aimed to produce insulin at a reasonable price for the diabetes population. Oh, I is this part of what's that nonprofit company making insulin. Hold on is the unit bio. That's what it was called. Story

Unknown Speaker 19:47
related to a low cost

Scott Benner 19:55
manual factoring company and. That's US based this is all me trying to say I can't remember the name of a they were on here. They came on here and did an interview with me.

God, why can't I think of what it's called? This is kind of, it's kind of wicked. So all right, yeah,

Jennifer Smith, CDE 20:20
I was looking up to it looks like

Unknown Speaker 20:23
civica. Yes, that's it. Thank

Scott Benner 20:24
you. Good job.

Jennifer Smith, CDE 20:26
Yeah, civica to manufacture and distribute affordable insulin because I remember I had gotten an article about

Scott Benner 20:32
it as well a while ago. Yeah, they were on here, long time ago. Also, I've been trying to reach out to the Mark Cuban company, but they're not getting back to me. Episode 675, how affordable insulin happened. Martin Van trice is the president and chief executive officer of civica. RX certificate is making affordable insulin. He's the one who mentioned West Virginia that stuck in my head, by the way, that I recorded that in 2022 in May, episode 675, he actually has stepped down since then. Oh, I think this was, you know how sometimes those guys who have had like, a ton of like, business success, they retire and they come back one more time and take like, another swing at something like the guy that set up the manufacturing for OmniPods in America. He was one of those guys. He worked for Pepsi manufacturing. He had retired, was playing golf, and they came and got him, and he set up all the manufacturing for OmniPod. Good dude. Chuck, very deep voice. Um, okay, do we have any other things outstanding about insulin supply that you didn't understand? No, all right, well, that was something Jenny didn't understand, yeah, and now we all understand much better. Yes,

Jennifer Smith, CDE 21:45
absolutely. So if it ever happens again, I'm assuming it will be something, I mean, did we really identify truly the manufacturing issue? No, no, we didn't, no, but because it's not disclosed, it's entirely they're not going to tell what the problem was, and that

Speaker 1 22:01
I find that the case with so many things

Scott Benner 22:06
like that. Well, you know what I always say when, when people are like, Oh my God, there's like, I did it last time. Did this happen? People like, there's an insulin shortage. Insulin shortage. Eli Lilly said that they're blah blah, and I came online, I said, Listen, if Eli Lilly is telling you what the problem is. It's already fixed. It's all right, right, yeah, you know, that's how think about how you hide from your parents or your spouse or stuff like you don't tell them about it when it's on fire afterwards go, My God, funniest story about when I was making my eggs this morning. The

Jennifer Smith, CDE 22:35
fire is out. Everything's fine. Yeah. I don't want to mention it

Scott Benner 22:39
while it was happening because I was embarrassed, but I mean, that's in the end, that's what companies do. They don't tell you anything till they know the answer. Today's podcast is sponsored by the Eversense CGM, boasting a six month sensor. The Eversense CGM offers you these key advantages, distinct on body vibe alerts when high or low a consistent and exceptional accuracy over a six month period, and you only need two sensors per year. No longer will you have to carry your CGM supplies with you. You won't have to be concerned about your adhesive not lasting, accidentally knocking off a sensor or wasting a sensor when you have to replace your transmitter. That's right. There's no more weekly or bi weekly hassles of sensor changes. Not the ever since CGM, it's implantable and it's accurate. Ever since cgm.com/juicebox, the ever since CGM is the first and only long term CGM, Eversense sits comfortably right under the skin in your upper arm, and it lasts way longer than any other CGM sensor. Never again will you have to worry about your sensor falling off before the end of its life. So if you want an incredibly accurate CGM that can't get knocked off and won't fall off, you're looking for the ever since CGM, ever since cgm.com/juicebox, and if you don't know that, you're not paying attention. So anyway, once they're telling you what the problem was, it's already taken care of.

Jennifer Smith, CDE 24:12
It's already but I do,

Scott Benner 24:14
I take your point though, like, I mean, if it's just like, we couldn't get the vials, or, you know, like the plant wasn't working. I don't know how that, like, how does it? I mean, the answer is humans, right? Like, it's always, that's always the answer.

Jennifer Smith, CDE 24:28
And the interesting thing is, it was across the board, in in both of the major Novolog and Humalog both had shortages.

Unknown Speaker 24:39
So being separate companies.

Scott Benner 24:44
Why were they getting something from the same price? Right?

Jennifer Smith, CDE 24:48
That's where there's something, something there that

Scott Benner 24:53
we're 20 minutes from Jenny, talking about the Illuminati. Hold on a second. There was, there's a recent shortage of Nova. Log products. The shortage included both flex pen and vials. The situation was due to intermittent back orders and manufacturing delays experienced by novo, the company reported that these supplies issues were expected to be resolved by December 2023 it says, despite shortage, actively producing and shipping insulin, I don't know like. What is it? It doesn't say like, and this thing only knows what it knows. You know what I mean, but Right, yeah, listen, if somebody from the pharma company wants to come on and explain how you suddenly don't have access to glass bottles, like, when I can buy them on Amazon, yo, I saw a lady. Can I tell you something that's got nothing to do with anything, but I'll end on this. Yeah, I saw a video of a lady, and she has type one, and she wants to use GLP medications, but she wants to micro dose it a little bit every day, right? And so, instead of taking, so, first of all, instead of, like, you know, getting a prescription for, I don't know, like, 2.4 milligrams a week. Ovi is, like a weight loss thing. She's got the, like, the mother of all, like pens, like, with, you know, a ton of milk milligrams, she puts, injects it into a bottle, mixes it with some hydrostatic something or other. Like, she's like, having a little project in her house, then drawing it up. She has a conversion chart for how to get the milliliters, the milligrams changed over to like insulin units, so she knows how much to use, and she's hitting herself from an insulin pen. She's every day she's given herself a little pop of it. And in

Jennifer Smith, CDE 26:32
no way is this medical advice we are not using to try to

Scott Benner 26:36
I watched it me, the guy who makes this podcast, was like, I don't know if you should be saying this out loud, but at the beginning, she said, This is not medical advice. And I thought, yeah, that's how I do it. But, um, but no kidding, Jenny, she's, she's like, I don't. She wasn't looking to lose weight, and she doesn't want to not be hungry. She just wanted a little bit of that, of that help with the the insulin resistance she was having. I was like, God damn, this is gonna happen one day. You know what I mean, although there isn't novo, hold on a second. Is Novo Nordisk working on a once daily GLP pill.

Unknown Speaker 27:16
I think I heard something about that. I think I heard something about that.

Scott Benner 27:23
And by the way, when you hear me say that, people are probably like always trying not to say where you heard something from. That's not true. I legitimately don't remember if I heard that or not. Risk is working on developing a once daily GLP one pill companies advancing with its phase three clinical trials for an oral version of semaglutide, a GL, 1p agonist. Okay, there the the oral formulation known as Robles and lower doses for diabetes treatment is being tested in higher doses for weight management, obesity treatment, the 50 milligram dose of oral semaglutide has shown promising results with significant weight loss outcomes in clinical trials, they've completed the phase three Oasis trial where the 50 milligram version of the oral semaglutide demonstrated an average weight loss of 17.4% over 68 weeks. I'll take that not bad with obesity without type two diabetes, that's obesity without type two the results are comparable to those achieved with their injectable like we covid. All right, cool. All right, Jenny, let's go find out what else you don't understand. Interesting.

Unknown Speaker 28:25
What else

Scott Benner 28:27
I don't understand? If you don't have something, there's plenty I don't understand.

Jennifer Smith, CDE 28:30
I understand the surface level. But again, this is more of a Go ahead in Jenny. In Jenny's world, everybody just get what they need to get, because they need it, right? And with type one diabetes, this is like most of what we use is in a way, life or death, especially insulin, right? Sure, products technology I get, but even with that life expectancy and all the things that we're working hard on blood sugar management for, we do better with more technology,

Unknown Speaker 29:04
right? Just has been the case. So my big

Jennifer Smith, CDE 29:07
issue is really with, why is insurance coverage such a crap shoot? Really, like, Why does one cover this? And, you know, I understand it has to do with contracts. And the companies come to the insurance and they're like, hey, we'll give you this and if you promote this product, and blah, blah, blah, blah, blah, but that is like, diabetes is not a one size fits all, and in a job like environment, you don't necessarily have a choice in insurance, right? You have to go with what they're offering you, or you can decline it and go to the marketplace and pay, like, exorbitantly more money, right? That's

Scott Benner 29:47
not a thing people can just do, right? Most people aren't going to say, oh, I'll just go pay cash for it. Don't worry about correct Exactly.

Jennifer Smith, CDE 29:53
And then the further you go with insurance coverage, it's like, once you get older and you are now in the. Medicare with type one diabetes. Do you know the hoops that people have to jump through in order to not only continue to get what their coverage is, but there's a defining time period of lab work has to be done within this like 30 day it has to be supplied in order to prove that you're still eligible to get these products. Like, why are we making this so hard? Why are we making it so that people have to do so much work just to get what they need when they're already doing so much work to just be healthy? You know what I mean I

Scott Benner 30:40
do this is, this is what I call your question on this one is, how do I explain this

Jennifer Smith, CDE 30:47
not really answerable? I

Scott Benner 30:48
know. No, no, no. It's, it comes from like a pure place. The question, yeah, I know what you said, Trust me, this is a question a 12 year old would ask. I don't know. Why is there war? Yeah? Right, yeah, I got you, don't worry. And there's nothing wrong with that. I don't mean 12 year old pejoratively. I mean a person who doesn't have the experience of being alive. And then we get into this idea that, like, you know, you know, they say people become more cynical as they get older. They'll say, like, liberal people get more conservatives, they get older. Like, that kind of stuff happens, right? And you start seeing the world work the way it works, and you think, well, that's just how things are. Like, we can't fight this, right? Like we were, you know, I told you that Arden, one of the questions Arden is gonna answer, or wants to have answered in her episode about I don't understand, is, I don't understand why there's only two political parties in America. Like, she's like, I wanna understand right there with her, right so like, and if you ask an adult in their 50s, they'll go, Oh, listen. And they'll give you some like, this is how it goes. This is what happens. But what they really mean is, is that people are trying to keep control of things. And when you have something you want to keep it makes sense. When you have something valuable you want to make money off. It makes sense, etc. I think that all applies right to this. Right? Like, this is just, this is, like, I have some stuff. I want more stuff. I want to keep my stuff. And so why can't, you know? So the the technical reasons, chat, GPD said, formulary, inclusion, cost and negotiations, clinical guidelines and efficacy contracts with manufacturers, patient demand or doctor recommendations, regulatory approvals, cost effectiveness, plan, specific policies, prior authorization requirements. These are the impacts on why some insurance companies cover a certain insulin pump and others don't cover that. And

Jennifer Smith, CDE 32:39
what is, what does it boil down to? What's the one word? Yeah, it boils down to, I mean,

Scott Benner 32:44
you're gonna say greed, I'm

Unknown Speaker 32:45
gonna say money. Okay, yeah,

Jennifer Smith, CDE 32:47
right. A lot it goes right along with greed. Really,

Scott Benner 32:50
I'm American. I don't see money as greed, but I hear what you're saying. So, like, I so here's what in my mind. The way I think of it is, there's a bunch of companies. They all make an insulin pump, for example, or they all make a glucagon, or they all make, right, you know, a CGM, or whatever. Like, there's a group of companies making a certain thing, and it kind of does fall back to Jenny's other I don't understand. Question is, like, why doesn't, why isn't there just one pump that does the best stuff that all the pumps do, which is, like, right on, you know what I mean? But the reasoning is, is that somebody dreamt up a tubeless pump. Actually, I had the guy on here one day, if you want to look for the episode called the pod father, I think this guy just dreams up a tubeless insulin pump. Well, the next thing they do when they dream it up is they patent the living hell out of it, right? So, like, you ever watch Shark Tank, and someone in a shark tank.

Jennifer Smith, CDE 33:41
I have seen it. I don't watch it very regularly, but I've seen it. One of

Scott Benner 33:45
the guys will ask every time, what's special about your product? Meaning, what can we patent about it? Because if there's nothing special about it, then you're gonna have this great idea. You're gonna start selling it. Everyone's gonna knock it off, and we're not gonna be able to make any money. Make money, right? Right? So they patent their tubeless nature, or they patent their algorithm for something, and then another company would come along and say, hey, well, we do this really well, you know, company B does something well, that company A doesn't do. If we could just combine what a does with B, my God, this thing would be way better, except we can't, because they patented it already, and we can't copy it. Do you know that the company TiVo? Do you know what that is? Tivo was like one of the first third party DVR services? Oh, yes. TiVo, yes. Uh huh. Tivo patented their something in their software, something like a season pass. So you could, I know I'm right about this, and if I'm wrong about it, I'm just the guy talking on the internet. Leave me alone. But they patented the Season Pass, which was this thing where you could go into your menu, go, Oh, here's Shark Tank, click, give me a season pass. And I would like the Season Pass to record every new episode, or I'd like it to even record the reruns you. Know, now playing, I think they called it. There was this massive list of Shark Tank episodes. They patented the Season Pass. And so the like companies like Comcast, who were making their own DVRs, couldn't give that functionality in their software, and that functionality is what makes the DVR fantastic. Like, isn't that crazy? That, right? That's insane, but that's how it works. And so if I have that story a little wrong, forgive me, but I have, I have trust of any, I have a lot of it right. Like, so why can't the insurance company here ready? We're gonna bring this whole thought around. So why can't, I don't know, Blue Cross and another company both offer me the mini med like, why can I get, like, OmniPod from them, but I can't get, I can't get Medtronic from them. That's where you get. One is

Jennifer Smith, CDE 35:49
covered better. One is covered at, like, almost 100% but yes, you can do this one, but it's not in the network, or whatever they call it, and so you're only going to get 50% coverage versus if you go with the approved product, then you get full coverage. Who I Am. Have you lived with me? Do you understand my that's where my real problem with this is, they're they're screwing with people's individual life of need and not understanding.

Unknown Speaker 36:21
They just don't understand, that's it. Yeah, yeah.

Scott Benner 36:25
They say to you, look, we're gonna pay full 100% for tandem. And you go, but I really wanted a tubeless pump. And they go, that's fine. We'll pay 70% of that. And you go, I can't afford the other 30% and they go, getting a tandem pump that is set up by the companies. Oh, absolutely right. Because when you absolutely listen, every time you hear, like, something news coming out, and you're like, oh my god, when's it coming? Why is it taking so long? You know, it takes the longest is them making their contracts with the insurance companies around the country? Yes, they are negotiating with insurance companies around the country and listen, do respect to them, if they can't sell the damn thing, then they just spent five years designing something that's going to put them out of business because they can't sell it. You know what I mean? So they've got to do what they've got to do within the system. So what's our question here? What's the real world, nitty gritty understanding of how formularies are set up. Tell me about the financial reasons behind why I can't get a certain pump product. Let's see if this let's see how devious this thing is. Also never type, shall we play a game into this? Oh, just in case you never saw war games. Jenny, Have you never seen the movie War Games, the 1980s film, war games with Matthew Broderick?

Unknown Speaker 37:51
No, although I'm sure my husband is a big guy down right? He has, yeah, no, I

Jennifer Smith, CDE 37:55
have never seen that. We'll do that

Scott Benner 37:57
at the end to see what happens. See if we can start thermonuclear war with chat GP, they probably can't, oh, that's what. That's how it started in the game. He sat down, he's like, shall we play a game? And then the game was like nuclear war, except it started anyway, war games. Check it out. Check it out. Yes. Formulary setup is complex process driven by both clinical and financial considerations. Here's a breakdown of how it works key players in the formulary decisions pharmacy and therapeutics committee. The committee is usually composed of healthcare professionals such as doctors, pharmacists and nurses, and they review and evaluate clinical data on new and existing drugs and medical devices. Their primary goal is to ensure the formulary includes effective and safe treatments that's going to be the other thing is that all these companies put out their data, it all matches up pretty well. So to them, it's a wash this pump or that pump. You're going to end up with an A, 1c about like this says the data right, right, but you're saying I might want a tube, or I might want not a tube,

Jennifer Smith, CDE 38:56
and or I might have skin issues that don't allow me to use a particular tubed pump or non tubed pump, or a particular cannula, or a particular CGM, and you've done everything you can to use it, because that's what you can use. And you do better with the other product that isn't approved, like it's such a and then the hoops you have to jump around, your doctor has to write letters, your doctor has to prove the case that you need this one versus this one. You have to prove that you're having, you know, hypo one awareness in order to get this product versus that. Like it's it's mind boggling. Yeah,

Scott Benner 39:32
and you need to do all that, because if you just took everybody at their word, everybody would just lie to get the thing they wanted. We'd be right back. And by the way, I wouldn't blame them if they did. Also, most of those letters that your doctors are writing are horses and like. So again, it's just, it's true. It's just, of course, it's true. It's adding a layer of complexity to knock out the people who won't fight the fight the whole way. It's it's just like when, whenever you turn anything into insurance, the first thing they do is deny it. You. It's because some people will pay and some people will call back, but most people will just pay. So, you know, they tell you, you can't have that pump. Most people go, okay, and that's the end of it. And some will fight, what do I do? And the doctor's like, Oh, we got to write a note of medical necessity. What does that mean? And what that what that means is the doctor's like, well, that means I sit down and I write up some that I know that they're gonna accept, and I'll say it about you, and then that becomes healthcare, right? Yeah? Like it's all just that pharmaceutical benefits managers PBMs are third party administrators of prescription drug programs for insurance companies. They negotiate with drug manufacturers and pharmacies to manage drug benefits and controls. There is an entire 10 year podcast about PBMs to be had. If somebody, you know how often I was willing to talk to you, I go online all the time. Hi, I'm looking for somebody who used to work at a PBM. Not going to get anybody, because they probably signed an NDA when they left with their fat, you know, stock options and Okay, negotiations and rebates, rebates, another part of, by the way, all this that nobody really understands, even the people are involved in it. Manufacturers often provide rebates to PBMs and insurance companies in exchange for favorable formulary placement. A rebate is a discount. Oh, I know what a rebate is off the list price of a drug or device that is paid to the insurer after the purchase. These rebates can significantly influence which products are included in the formula. So your insurance company is like, look, Jenny needs insulin. She can take any of these. If Company B is going to send me a rebate and I'm going to save when I pay for a vial of insulin, and I can still charge Jenny the same amount for it. Well, then this is the insulin Jenny's getting because it's cheaper for me the insurance company, which is something set up by the pharmacy benefits managers,

Jennifer Smith, CDE 41:46
who gets a lot of money, yeah, the job that they're doing, yeah, a lot of money. Yeah.

Scott Benner 41:53
Hold on a second. Tell me about the people who own PBMs. Are they wealthy? What island do they own that they're flying in on a rocket to? Kind of jets do they fly in? Pharmacy Benefits managers? This is going to get me killed, by the way, if I disappear. You guys know what happened? I don't know. He got hit by four cars, they'll come to me next that he fell down them stairs and then his body, yes, the question. His body landed on top of a lady with diabetes in Wisconsin, killed her instantly. Health CVS Caremark is a fortune 500 company with significant revenues in its pharmacy and health care services. As of 2023 CVS Health reported revenues exceeding $300 billion now there's what you can't get your insulin Express Scripts. Cigna Corporation acquired Express Scripts in 2018 they are a major player in the healthcare industry with revenues of approximately 174 billion. The acquisition of Express Express Scripts for 67 billion significantly boosted its PBM operations. They paid 67 billion for Express Scripts, and now it's worth 174 optimum RX. United Health Group is the largest health insurer in the United States, with revenues suppressing 350 billion. Humana is a major health insurer with revenues of over 90 billion. Its PBM operations contribute significantly to overall business and primed therapeutics owned by a coalition of Blue Cross and Blue Shield plans. Wait a minute. The insurance company can own the PBM. Okay, hold on a second. While smaller than some other competitors, Prime Therapeutics manages billions in drugs spend for its BCBS affiliates. Hey, by the way, if any of these companies don't like this, talk to chat. GPT, not me. I'm just reading the internet. You're just reading it. Absolutely wealth of PBM executives. Meanwhile, we

Jennifer Smith, CDE 43:51
have teachers who can barely afford to, you know, drive a car to get to work and teach the children what they need to learn. This is what's happening.

Scott Benner 44:01
Top executives at PBMs and their parent companies often receive substantial compensation packages, including salaries, bonuses, stock options and other incentives. I want to jump in here and say I'm okay with people making money. Okay? Like, like, yeah. But

Speaker 1 44:14
Jenny makes a point. It's a simple point. If you have type one

Scott Benner 44:19
diabetes, you ought to be able to get the pump you want. You ought to be able to get the insulin that works best for you, and the CGM in the end, it's a bunch of plastic with some wires inside of it, or not, and it comes from just what's the point.

Jennifer Smith, CDE 44:31
You make billions anyway. So just sign the paper that says, anybody who has type one or type two, or, you know, diabetes, you can have the system that you need to have if you have insurance coverage plan. This is what your these are your options you choose. I'm going

Scott Benner 44:46
to tell you, I'm going to leave this lady's name out, but in 2022 the CEO of CVS Health earned a 20 million in total compensation, right? Yeah, come on now listen. I want to say this. This is going to sound like I'm if. If this person or made $5 million in total compensation, and we had 15 million left over and we divvied it up between everybody with diabetes, you'd all get 18 cents. So like, that's not where the problem her making $20 million I mean, is Jesus Christ. That's a lot of company to make it a year. But that's not, that's not the problem. The problems up here with the $350 billion made, or 174 billion. Because if you add these up, by the way, it's 300 billion, 174 and 350 that's three companies. Then there's 90, and then Blue Cross isn't listed. But what we're talking about here is just the ones that it listed. Please add up 300 billion, 174 billion, 350

Speaker 1 45:48
billion and 90 billion. The total is $914 billion okay, $914 billion

Scott Benner 45:54
with A, B, by the way, that's what chat, G, P, t4, point it sounds like, if you let it my boil down

Jennifer Smith, CDE 45:59
to this is if you and your company and all of minions that are within this, right? I don't understand what the problem is. Just signing the paper that says, Look, give them what they want. I don't. That's where I have a really hard time with you're going to make money regardless. Can't

Scott Benner 46:20
they make this money? And let you decide between libre and Dexcom, and ever since, yeah, right, right, right, there's the human part. That's what I was talking about the beginning, right? The like, I got it, I want it. I need to keep

Jennifer Smith, CDE 46:32
it like they don't manage one of these companies. Yeah, chicken company would

Scott Benner 46:36
be broken. None of you would have a Dexcom. Then she'd be like, what happened? She's like, I just gave them to everybody. We don't have any money, and we closed so I think that is the other side of it, is that, listen, these companies, they employ probably countless people. Those people have children, those some of those people, and some of those children probably have type one diabetes. Like, you know what I mean? Like, it's, it's not as clear cut as all that. But I do wonder why a company couldn't sit down and say, Is there not a way we could all, like, we can collude to take money from people? Like, could we not collude to, like, make sure everybody gets what they want but they need? But they might tell you, it doesn't matter. Like, what if that happened? What if they sat in room and said, Listen, here's the list of you know, what we see with people who, you know, have type one diabetes. This percentage of people don't have good health, health outcomes. No matter what we do for them, we can't seem to figure it out. And this like, what if the answer is, the chips fall where they fall. They're gonna fall there no matter what. At least I have a boat like that would be horrifying. But I'd love to have that conversation with somebody who would be interested in just being honest and and say, like, look, we we've tried this, we've tried that, we tried this. It don't work. Because, I mean, I know people who work inside of big companies, and it's difficult to make anything happen. It is, you know, it's incredibly difficult to make anything happen. You can say, well, it's on the people, or it's on the leadership, but it's not. None of it's that easy. Sometimes you build this thing and it gets so big, it's controlling itself almost, you know what I mean, and then there are bad actors inside of it sometimes, and good actors, and they spend a career fighting against each other and getting absolutely nowhere. So I don't know, but I think if I had $20 million I'd be happier. I just want to say that I'm pretty sure, I'm sure I would think I'd be I

Jennifer Smith, CDE 48:25
can imagine all of the things to do with $20 million none of them involving my own yacht or my own plane, like, right? I just that's, I don't know. I have no desire for that kind of stuff. Even if I had the money, I can think of many other things that I would do with that amount of money that are serving

Scott Benner 48:47
every wealthy person says that at some point the numbers meaningless. And that number, by the way, is lower than you think. It is an amount of money that you would live your life happily with. It's less than you think it would be, and that's even more upsetting, because that means that somebody's got, you know, somebody's living a great life off of a million dollars a year, let's say, and the other 19 is sitting in a pile somewhere that's going to eventually get taxed to death, and then go to one of their kids and turn their kid into a heroin addict, because they don't have to work, and then they'll have three Other heroin addicts, and then before you know it happens, I don't know what to tell you, like, this is what happens. My

Jennifer Smith, CDE 49:26
thoughts always go the other direction they go. They could do this, and they could teach their children to be good people. That's if it works out. Financial influences

Scott Benner 49:33
and market power. PBMs wield substantial market power, negotiating prices with pharmaceutical manufacturers and pharmacies. These influences can lead to significant can lead to significant financial gains for their owners and executives. The consolidation of PBMs has also led to increased profitability as larger entities can negotiate better terms and achieve greater economies of scale. Here's from chatgpt, criticism and regulation, the wealth and influence of PBMs has attracted. Did scrutiny and criticism. Critics argue that PBMs contribute to higher drug prices and lack of transparency in their pricing and rebate practices. This has led to calls for increased regulation oversight to ensure fair practices. Blah, blah, blah, I'll tell you this, I have had some of the best conversations of my life with chat GPT four. Oh, you could sit down and ask it anything, and you get back more information than you would get if you sit down with people sometimes. Sure, it's interesting, because

Jennifer Smith, CDE 50:28
it has such a wide reach to pull from access it, right? It's just got access to. It's like having the entire encyclopedia Britannica in your head and just being able to snap out, yeah.

Scott Benner 50:42
Now also I asked it a slanted question. It did source, by the way, it sourced CVS, health annual report, sickness, financials, United Health Group, financials, Humana, Prime Therapeutics and CV, they actually did all this. So let's say this like would what you told me change, if the tone of my question changed, meaning, what if I asked if this system is necessary To make sure Americans have the supplies they need.

Unknown Speaker 51:23
Or is that a false equivalence?

Jennifer Smith, CDE 51:29
I'm amazed at the length of the question that you can give it, that it filters it well you can,

Scott Benner 51:38
it's amazing. Jenny, I can drop in, I could drop in a transcript right now of any conversation you and I had, and say, Give me the key takeaways of this. You'll read them, and it'll sound like you and I are talking to each other, and it's, it's in, kind of like a bullet point boiled down and beautiful or explained out. Depends on if you want arguments for the necessity of PBMs negotiating discounts. PBMs negotiate discounts with rebates with drug manufacturers. That's from a diatribe article formulary management. PBMs develop and manage formularies to ensure that effectiveness medications, blah, blah, blah are lowest possible cost. Claims processing, PBMs handle the complex process of claims, education, adjunction during the prescriptions are processed accurately and effective. Well, that seems like we made a big mess, and now somebody has to learn how to like weed through the mess. Yeah. Cost control measures, pharmacy networks. PBMs create pharmacy networks to provide patients with access to medications nationwide by negotiating contracts with pharmacies. PBMs ensure the patients can get their prescriptions filled conveniently. Criticisms opaque pricing practices. Critics argue that PBMs often operate with a lack of transparency. I mean, I would, if I was making three, $50 billion I'd be like, I don't think anybody needs to know what's happening over here, right? Making it difficult to understand how much of the rebates and discounts actually versus go to the patients versus the PBMs, and that that the opacity can lead to higher out of pocket costs for patients, rebate structures, systems can incentivize PBMs to favor higher cost drugs that often that offer larger rebates rather than cheaper or equally effective alternatives, potentially driving up overall health costs. The consolidation of PBMs has led to a few large companies dominating the market. I think we can all agree that that mostly doesn't end well for us. Impact on pharmacies. Independent pharmacies often struggle with reimbursement rates set by PBMs because they don't sell as much, I guess so. If you cut undercut them, they're gonna and by the way, I go to a I go to a private pharmacy, just like some nice man who started a pharmacy, started a

Jennifer Smith, CDE 53:43
pharmacy. Yeah, I actually get my products a lot less expensive going through the pharmacy that I am, comparative to where I used to get them. Yeah,

Scott Benner 53:54
now I, by the way, they calls me, Hey, your thing's ready. Come on over. Blah, blah, very nice. Like you're not rushing around notification,

Jennifer Smith, CDE 54:00
I get like a text notification, ready? You're ready for refills? You could say, yes. What do you need to refill? This, this and this, great. It'll be sent to you. Are you sure you still live at this address? Yep, sales job. Jenny,

Scott Benner 54:12
by the way, that's a sales job. They got your drugs that you need them. This conclusion is very clear. The PBM systems play a crucial role in managing drug benefits and controlling costs within the US healthcare system. However, it is not without significant criticism regarding transparency, market power and the true cost savings benefits to patients. Whether PBMs are the best or only way to ensure Americans have access to necessary medications, is a subject of ongoing debate with alternative models and regulatory reforms being actively discussed as pens, potential improvements again,

Unknown Speaker 54:44
unless we all pull up

Scott Benner 54:46
$950 billion and hire some people to go down to DC and lobby for us, I don't think it's going to change that much. Right? That's the answer to your question of, how come I can't just have that now, if you want to ask another day, why? Like, can I have a tubeless pump that uses that algorithm instead of this algorithm, and it does this instead of that? Blah, blah, blah, that answer is patents. So, oh, 100% you know, getting around that, yeah, and those companies deserve, you know, they deserve to make money off their idea. But correct

Jennifer Smith, CDE 55:16
and their ideas are valuable for the people that they meet the need for absolutely, I don't disagree with you know, your own ideas being something that could benefit this person versus that person at all. It's great to have choice. It's great to have all the choices that we really do. I just wish that we had the choice to truly make. I want to pick this just covered. It's

Scott Benner 55:43
just another thing Jenny doesn't understand. I understand question. So Jennifer, you do me a favor and you keep making that list of things you don't understand. And we're going to do this for a little bit this summer. Is that okay? That sounds fun? Yeah, you had a good time. Scott reads. The Internet. Was good for you. Perfect. It was beautiful. All right, I know you have a thing to do. Go ahead and do it. I'll

Jennifer Smith, CDE 56:01
say I do. Thank you. Okay, bye. I

Scott Benner 56:07
want to thank the ever since CGM for sponsoring this episode of The juicebox podcast, and invite you to go to ever since cgm.com/juicebox to learn more about this terrific device, you can head over now and just absorb everything that the website has to offer. And that way you'll know if ever since feels right for you, ever since cgm.com/juice box. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to omnipod.com/juice box. That's it. Head over now and get started today, and you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. Huge thanks to cozy Earth for sponsoring this episode of The juicebox podcast. Cozy earth.com use the offer code juicebox at checkout to save 40% off of your entire order. Are you starting to see patterns? But you can't quite make sense of them. You're like, Oh, if I bolus here, this happens, but I don't know what to do. Should I put in a little less? A little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the juicebox podcast. It begins at Episode 1000 you can also find it at juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 okay, well, here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app, go to YouTube and follow me or Instagram. Tik Tok. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group, as well as the public Facebook page you don't want to miss. Please do not know about the private group. You have to join the private group as of this recording, it has 51,000 members in it. They're active, talking about diabetes, whatever you need to know, there's a conversation happening in there right now, and I'm there all the time. Tag me. I'll say, hi, hey. What's up, everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you wrong way recording.com you got a podcast. You want somebody to edit it. You

Unknown Speaker 58:47
want rob you.