#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.

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

Scott Benner 0:00
Hello friends and welcome to 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.

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#1279 IDU: Insulin shortage & T1D insurance coverage

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

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

Scott Benner 0:00
Hello friends and welcome to Episode 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
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#1278 Twist My Brain

Julie's son has type 1 diabetes and ADHD.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

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

Scott Benner 0:00
Hello friends, and welcome to Episode 1278 of the juicebox podcast.

On today's show, I'll be speaking with Julie. She's the mother of three, and one of her children has type one diabetes. And ADHD, please don't forget that nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. AG, one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's juicebox at checkout to save 40% at cozy Earth com, if you're looking for community around type one diabetes. Check out the juicebox podcast, private Facebook group. Juicebox podcast, type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out juicebox podcast, type one diabetes on Facebook.

The episode you're listening to is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, 888-721-1514, you can get your diabetes testing supplies the same way we do from us med. This episode of The juicebox podcast is sponsored by Eversense. The Eversense CGM is more convenient, requiring only one sensor every six months. It offers more flexibility with its easy on, easy off, smart transmitter, and allows you to take a break when needed. 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.

Julie 2:20
My name is Julie. I'm the mother of an 11 year old type one son, and I work as a pharmacist in critical care for a living 11

Scott Benner 2:29
year old son. That's type one. Your critical care pharmacist?

Julie 2:36
Yes, I am. What is that? Pharmacist in hospitals, people don't seem to realize but they're a bit everywhere, kind of hiding in the background. Obviously, there are some that are in the dispensary looking at the orders that come in, dispensing them as but the more it goes, the more the profession is becoming deeply involved in the teams on the units. And so a critical care pharmacist is a pharmacist that is in with the ICU team, rounding and a bit like a consultant, but part of the team where you try to customize, adjust, make sure the meds are ordered right and safely for everybody.

Scott Benner 3:16
Did you happen to hear the first episode of the cold wind series? I did, yeah, and that person was a clinical pharmacist. Am I right? Ah, it's a pharmacist in a hospital, bunch of beds. She said they were involved in some of the care stuff. Maybe something similar, perhaps,

Julie 3:33
or I thought I did, or maybe I heard the brainstorm. I don't know if I heard that one. Oh,

Scott Benner 3:38
okay, well, I got to speak to that person. That person spoke anonymously because they were being very honest about the hospital they worked in and some of the things they saw. Do you need to be anonymous or? No?

Julie 3:50
No, because my, my goal is not to be a whistleblower. Okay, it's more to give the reality of the practice. Nice.

Scott Benner 3:57
I would love to hear about it, and you're just so I don't wonder the whole time. Are you French Canadian? I am. You sound very French Canadian. That's

Julie 4:05
why I asked. I know. And the more tired, the more it comes across, really.

Scott Benner 4:08
Oh, that's interesting. Are you tired now?

Julie 4:10
I am. How come? Because I do too much with not enough time and and take care of of my type one, but also of my two other boys. And

Scott Benner 4:21
yeah, I know it's a it's a lot. I think it's a bit of a circumstance of how great life is right now and how many things there are to do and accomplish and see. It makes you feel like there just isn't it really does feel like there's not enough time. I woke up at 430 this morning just to go to the bathroom. Open my eyes. I feel the bathroom. Went to the bathroom, I walked out, I went, what about this? I checked on something, and I went, looked at something else, and then before I knew it, I didn't go back to sleep, and I haven't been bored or slow and it that was eight hours ago. Now, you and I are recording at noon my time. I still have 1000 things to do today. I'm excited about every one of them. So. So I know how you feel. But anyway, you're here to Well, I guess you know what. First, let's find out a little bit about your son with type one. How old was he when he was diagnosed?

Julie 5:09
He was six years old. We're just past the five year mark. Okay, how is it going? We're not achieving the same kind of goals that you and your daughter are achieving, but it's going as good as it can. My son also has ADHD, which makes life a little bit more difficult. So we need to find ways to find compromise between what he can do and the goals that we would love to

Scott Benner 5:35
achieve. What are some of the things that stand in the way of of the goals?

Julie 5:39
The first thing is, is inability to keep his eyes on his blood sugar. ADHD, people usually need a short term reward that they care about to get themselves going. Diabetes is a long run right? So it's not very easy for him to actually look at his blood sugar and even to react to alarms when Dexcom is screaming at him, because it's less interesting than what else he was doing at the time where the alarm came. Does

Scott Benner 6:09
every person not need a reward for things to be interested in it?

Julie 6:14
Yes, but if you're not able to foresee the future and so try to aim for long term goals. Okay, diabetes becomes not interesting quite fast. I see, I guess he's never had any really bad lows that required, like glucagon or anything like that. So for him, the idea of severe hypo is still very elusive, like, it's not something that's tangible. For him, yeah,

Scott Benner 6:38
I understand. So he manages with what I mean, you're in Canada, they give him a stick and a rock, and you pour the insulin through a leaf.

Julie 6:46
Well, when we started, we were given umog and NPH, because there's no nurses in school in Alberta, and so we needed to find a way to cover lunch without having a poke at lunch, which works, not at all, but that was the first, the first year of therapy, because of the setup that we have, and because, like, I was offered a pump after three months, but I was not ready with what it implied I needed time to process, because here with no nurses, that means that if something wrong happens With the pump. I have to drop everything at my work and then go help him out, right? Because at the time, he was six, right? Well, no, he was six the first year, and then he was seven when we started the pump. The

Scott Benner 7:32
pump, it's not in every province, correct, but there are some where there are just no school nurses. So this whole NPH thing is how they get around that.

Julie 7:39
Yes, that's, that's the practicality of it without school nurses, right?

Scott Benner 7:44
Okay, so when a pump could have helped, you weren't ready. What kept you from being ready? Do you recall,

Julie 7:49
as I said, for me, it was the idea that, because you know, like you know, that if the pump stops working, if that's tripped off, something happened,

Scott Benner 7:57
I'm sorry, just the fear that if something happened at school, you'd have to leave and go there.

Julie 8:02
Yes, because I have a job, because I don't know how my boss, how understanding my bosses are going to be, gotcha, it was just very heavy on my back. Yeah, a few months later, I was ready, but then we were on vacation when they were giving the pump classes, and so it took, in the end, 11 months to be able to access the pump. I

Scott Benner 8:18
see, I just kind of imagined that there would be other reasons, but that reason was strong enough for you that it just stopped the conversation. Yes, yeah, okay. That being

Julie 8:27
said, he was getting to it was very sensitive initially, and so you would end up like above what Dexcom measures every single evening. And I couldn't exactly correct him, because it was at a time where I was hoping to sleep a bit, and you would go from like here is 18 to four, so something like 350, to 70 with half a unit of insulin, which was the smallest measurement that the pen was allowing.

Scott Benner 8:55
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 GE voc hypo pen. My daughter carries GE voc 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, jivo 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 ardent 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 pan. Curious, called an insulinoma visit, gevok, glucagon.com/risk, for safety information, yeah, gotcha. And then are you? Are you married? I am you are and you have a couple of other kids, or did I get that right? You have three, yes,

Julie 10:16
in total, 11, nine and seven. Gotcha. Okay,

Scott Benner 10:19
so you would see that high blood sugar, and know, if I make a correction, even a small correction, to this, it very well may be a low in the middle of the night, and I have to sleep or this whole thing's gonna fall apart. Yes, yeah, that's a tough decision, right?

Julie 10:34
It was awful, yeah, but I didn't have the confidence to just because I could have pulled the syringe and done it myself, but I was just not there. I was kind of frozen. Yeah,

Scott Benner 10:46
yeah. Can you talk a little bit about the, I'm assuming, guilt that comes with letting the blood sugar stay high?

Julie 10:53
Oh, obviously, like that guilt is even today, that guilt is is awful. Like I don't need to to be convinced of what I need to do to get my son where he needs to go. At my work, I see the people that have all the complications by their 30s and 40s. Yeah, no, I see all the people that that chose to not take care of themselves or were pushed into it because of circumstances. I play as hard as I can, but I guess I'm limited with what we can achieve with my son, with the fact that there's literally nobody looking out for him at school.

Scott Benner 11:33
So there's nobody at school to help. He's not able to focus on himself, no, and there's only so much you can do your spread thin enough already,

Julie 11:44
yeah, I basically go in from a distance, right, right? I

Scott Benner 11:48
would imagine then your focus, when you have free time to think, is about how to get him into a place where he can help himself better. Is that? Right?

Julie 11:55
Yeah, twist my brain backwards to try to find how you can manage or how he can take more on himself, or give him more freedom, because now he's a pre teen, and he doesn't necessarily want to eat on a schedule, so we give him tools, and I try to emphasize because with ADHD, having visual or physical reminders is key to be able to keep remembering like the short term necessary short but the working memory is faulty to certain extent, and so being able to have like, alarms on his phone or a cheat sheet in his lunch, or even, like I use masking tape that I put on every single container and every little thing in his lunch, so that, in the worst case, if he grabs the thing, he's gonna see the green tape and it will remind him that he needs to bolus. And how much does that work? For the most part, it works okay. Sometimes he forgets to do some things or but it's as good as it can be.

Scott Benner 12:55
Do you have the opportunity like to text at lunchtime?

Julie 13:00
When he was younger, the teachers were open to have Dexcom on their phone and to have me text them. The past couple of years in grade five and six, that kind of went away. The teachers don't want to give their private number. Some of them told me, I don't want to have my cell phone in my classroom. So even, even if I write them a 15 page care plan like I'm supposed to they're not able to apply any of

Scott Benner 13:23
it. Think that's an excuse from them. Or do you think they really don't want I mean, do you know three people that don't have their phone with them?

Julie 13:30
I don't know. I think the grade five teacher really didn't want to have his phone in his classroom. The grade six teacher, well, she said that she would borrow the school's phone for like, a month or two, see how things go. And then, by then, we were already set up to just function, him and me and so. And in the end, I don't have all I also don't have anybody that's like, fighting with me when I want to wing it, no, like when I just want to follow and go with the flow,

Scott Benner 13:54
just do what you want to do. Yeah? That part's nice not to have another person involved in the conversation. Yeah? Yeah. I don't know anything about ADHD, really, but is it a thing that can be medicated? Or, like, how do you attack the bigger problem? Yes,

Julie 14:10
of what I understand, the vast majority of patients will do much better with medication, mostly stimulants like the Ritalin and Dexcom of this world, and all those other formulation of the same and some of them will be able to it's basically a delay in your executive functioning, development in your brain. So you're you're not at the level where the rest of your body is. And whether or not that delay will catch up, or it will, it will always be behind you, don't know. And so the way to palate for that is to give medications. There's a set, mostly it's stimulants, but there's a couple other classes of meds that you can give as well.

Scott Benner 14:52
Are you qualified to describe that to me? How does that work? If somebody is going so fast that they can't cause. Trait. Why does speeding them up help them slow down? It

Julie 15:03
doesn't speed them up. It basically keeps the if I remember, well, it keeps the neurotransmitters in the window longer interesting, so that the study effect lasts a bit longer, and it gives them an ability to focus.

Scott Benner 15:18
Are there diminishing return to that medication, like, can it? Does the efficacy go as time passes?

Julie 15:24
The main two things that I would see with those meds is they are appetite suppressants, or at least the stimulants. I'm not talking about the other two classes, yeah. But the main the stimulants are appetite suppressants, so you end up with people that have less appetite, and then you need to monitor their weights, especially with children, to make sure that they're not losing weight over time. Some kids have to stop those meds because they cannot find a way to keep up with the weight I

Scott Benner 15:50
see. Does anyone do you think anyone remembers the episode of family ties with Michael J Fox, where his Sister Justine Bateman, who is, by the way, Jason Bateman's sister, her character, is using one of those drugs as a diet drug, and then he gets a hold of it during test time and uses it as like speed to like study for fun. Does anyone do you remember? Did you ever watch family ties? Being

Julie 16:15
French Canadian, my cultural background is, is very different. Family Ties is not something that I used to watch. I vaguely know about it,

Scott Benner 16:22
but, oh, you do Okay, yeah. I hope people right now are like, I remember that episode. Does everyone remember his friend's name, the dorky guy? Skippy? That's enough of this. Let's move on. Julie. Okay, so does your son use the medication?

Julie 16:35
He does. Yeah, he's using five Vance for now, and

Scott Benner 16:39
it's doing something, it not enough. Oh

Julie 16:42
yeah, himself and and us can tell. Because the problem is, it's a matter that you need to take early in the morning so that it can wear off by the end of the day and you can go to bed. Okay. Otherwise, people have insomnia, and so by eight, nine o'clock in the morning, if he hasn't taken it, everybody knows.

Scott Benner 16:59
Everybody knows, because he's scattered, yes, yeah,

Julie 17:03
like, yeah, and even him. I usually get a text by eight, nine in the morning, saying, Hey, Mom, I think I forgot my meds. Gotcha. So it works better for him anymore. It works better for us. I see there's less impulsivity. There's more focus towards activities that he likes and activities that he doesn't like. Does

Scott Benner 17:19
anyone else in your family have this like Do you have any other experience with it?

Julie 17:23
It's a highly genetic disorder. For the vast majority of people with it, other than some head traumas, it's a genetic disorder. And there's a brother of my mom that was diagnosed at 60 with it a few years ago at 60, at 60, but he struggled his whole life. Yeah, and now he has an explanation. He just thought that he was dumber than the rest of us. And in the end, he was not. He was having issues with focusing and about that functioning. How

Scott Benner 17:52
does that get diagnosed? It's,

Julie 17:57
it's kind of a clinical diagnosis, like, there's not like a blood test or anything like that. You can have a full evaluation with, like, either a psychologist or psychiatrist, or we went kind of the short way, like there's some questionnaires, like one page questionnaire that are asking you if you if you do certain things, like never, sometimes, often, all the time. And you have to show that it's across settings, meaning that it's not just a home problem, it's a home problem, a school problem, a daycare problem, a work place problem, interesting, and so it gets diagnosed based on your scores, or you, as I said, the evaluation that the professionals can do, you can try meds. Most people will see a benefit with stimulants, because obviously it, like some people use it as drugs to do exams, right? Because it allows you to focus intensely on something, but if you have a deficit, well, it brings you closer to normal about that.

Scott Benner 18:52
That's really something that's a lifelong thing. Or do you come off it once in a while to see if things have changed?

Julie 18:58
As I said, like there's a small portion of people, I think that by adulthood, have caught up, but the vast majority of people still need some help. Okay, later in life, either they learn strategies to cope and or they use meds.

Scott Benner 19:14
My last question is, do you know what the half life is? The half life of the man? It only stays in your system for 24 hours, right? Like so if you stop taking it, it's

Julie 19:24
less than that. It's less than that because it needs to wear off by the end of the day, otherwise you don't sleep at night.

Scott Benner 19:29
So you it's the thing you would see a benefit from immediately if you took it. Interesting. Yes, okay, cool. All right, that's very interesting. I appreciate you sharing that with me. You wanted to come on the show, though, more to talk about, like your job function and and what you do. So tell me about it.

Julie 19:46
So, yeah, so I've been, uh,

Scott Benner 19:50
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Julie 22:35
box a critical care pharmacist for 17 years now, and we see all kinds of it's not a unit that has only obviously diabetics. It's very a mixed bag of surgical, medical, trauma, transplant, all kinds of people. I don't know where to start. I totally understand the frustration of the patients and their families when they feel like the medical team doesn't understand type one, and I kind of agree that they do, and they also have for a lot of them, at least in ICU, they don't have much interest for it, because there's so much to learn. ICU is a mandatory rotation for most residencies, I would think, and it's a world that of its own. Like, it's a world where all the things that you care about in the outpatient setting becomes not obsolete, but like, we'll get you out of here, and then we can talk about your blood pressure and your cholesterol and your diabetes and all that stuff. I'm not quite sure how they get taught in school, and it's the same for me, you know, like I talk with my colleagues, and it's the same, I try to to explain to them how things work and that the day you you change how you feed the patient. Well, obviously you need to look and change the insulin to go with it. But there's so many variables. No, like people are often times infected or insanely stressed out from the trauma that they are going through, and from the disease that makes them so sick they need to be an ICU and the ventilator that makes them breathe and or the physio that they they try to make you do, to keep you active, not lose so much muscle mass and keep your brain in a better place that It's really, really hard to adjust any of this until you're stable. So

Scott Benner 24:24
if the people that you're working with don't seem to understand and maybe don't have a ton of interest in it, you do now, because your son's been diagnosed, but prior to his diagnosis, working in a hospital setting, and what was your understanding?

Julie 24:37
I was exactly where I am now, and I was exactly like the rest of them, not because we don't care about the patient, but it's just sometimes it looks if even to us, it looks like, oh, it's diabetes. Well, to them, in that setting, it's even more, oh, it's diabetes. It becomes easier oftentimes, to use an insulin infusion, because then you. You, you can tweak it as you go, and then when the patient is more stable, we can go towards like, B bit the basal, bolus, insulin, as long as you have some degree of stability

Scott Benner 25:11
like so it feels like to me a little bit like you want, you want me to understand that you don't think that the lack of knowledge is, I don't know what the right word is. It's not malicious, right? Like, but

Julie 25:26
no, diabetes just looks more random to them, okay, than it does to me. Probably, how? But even then, even even I take guesses on how to adjust things, no, like, I need to have the confidence to just say, let's try this and see what happens. Even

Scott Benner 25:44
though there's a mathematical equation that can help you set up a person's basal insulin, insulin to carb ratio, insulin sensitivity. It's based on their weight. You know, it's a it's a starting place. It's based on their weight, their amount of activity. That's not random. It's just a thing you need to learn before you you know what I mean?

Julie 26:02
Yeah, right. But in the acute setting, all those things go out the window. No once you have a massive infection, or you have a trauma, or you you're sick from whatever you're sick of, but that requires you to be in ICU, all those things change, even if you knew exactly their parameters, those parameters have changed significantly.

Scott Benner 26:24
No one's going to try to fix it right? Like there's no there's no world where you come in in that acute situation and you know, they say to you, Hey, how's your blood sugar? And you go, my a one sees nine and a half. It's not great. They don't stop and go, Okay, well, we'll fix your insulin settings so that we can get it closer to being correct for this day. Like nobody really does that, they go, Okay, no,

Julie 26:46
obviously, but, but they just put you on an insulin infusion initially, probably with a target that's a lot more lax than what you would target at home. That being said, the patients that come in with anyone at C 10, you don't hope to fix them fully by the time they leave the hospital. Obviously they have bigger issues. Yeah,

Scott Benner 27:04
but see, that's funny, because when you say because when I hear people say, it's not just you, and I'm not arguing with you, I'm interested in the conversation. But when people say no, obviously they don't fix that, I don't understand that. So if I came in, for example, and I had recently, I don't know, I have a big laceration on my leg, and it's emergency, and I come in and they say, do you take any medication? And I said, Oh, yeah, I do. I take a heart medication for an arrhythmia, but I know I don't take the right amount with the hospital. Say, Well, how much you taking? And then call in a cardiologist and have the cardiologist come and go, Hey, you know what? They're right. They're not taking the right amount. This isn't right. Will change there. Wouldn't that happen?

Julie 27:42
It would happen. You hope by the time they go home, that being said, a lot of those things are offset by the fact that when you're really sick, often times you need meds to keep your blood pressure up, and all those meds are stopped because they have the potential to make your blood pressure even lower. So I said all the stuff that you do chronically is kind of on pause. The stuff that we need to restart right away, right away, we will, but there's a lot of things that become secondary to you surviving this. Is

Scott Benner 28:10
it not true that most of the reasons people find themselves in emergent situations is because the stuff that they're supposed to be doing chronically they don't do correctly some of it, yes, yeah, but it still doesn't get addressed, though.

Julie 28:23
It will get addressed probably closer to discharge, and it needs to be addressed by the family dog after that, because, as said, when you're not in your home setting, some things are going to behave differently, no, if you're if you're stressed because you're in hospital, maybe your blood pressure will be higher than it would be sitting at home in your cozy environment that you know, sure, and so if we adjust your blood pressure meds to meet that target on the ward, then you go home and you go hypotensive, and all those like blood pressure is is one example. But like a lot of things, flip upside down when you're in the hospital, just because you're you know you're sick, your body knows you're sick, and you don't react the way you would expect to. Plus it for blood sugar, they are still nobody has a Dexcom in a hospital, right? Nobody has a as a libre everybody's doing like, four times a day pokes, plus when you're worried. But in ICU, when a patient is sedated and intubated. Don't necessarily tell you that they feel like, Oh yeah, I'm starting to have their shakes, and so you need to play it very safe, because you don't want them hypo All right. I

Scott Benner 29:29
mean, I understand it's just comes down to the fact, I think of a of the layman's expectation, the hospital is the place where I go to see medical people. If there's something wrong with me, they're going to address it. But in more honesty, a hospital is a place for procedures and for emergencies. It's not really to get

Julie 29:49
your health in order, or at least it can be a start of something, but it needs to continue in the community afterwards.

Scott Benner 29:55
Yeah. So what falls apart after that? The patients go

Julie 29:59
back. To their own habits. That's one thing the family dogs. Some, some are very good at it, and some maybe not so much, because they deal for with a lot of things. Like family dogs have a job that is very difficult, in the sense that they need to be able to flag for a million different things that could go wrong. Yeah, they're probably more cautious than aggressive by fear of of causing, as I said, hypoglycemia, hypotension, like stuff that in the immediate moment could be risky, because if you have somebody that you know, if you have, like a 75 year old woman that has hypotension or low blood sugar, they might fall down the stairs, and then they become somebody who will probably not make it in the end, because then they broke both in their body, or they became paraplegic. Or, you know, it's a big it starts a spiral that doesn't necessarily lead where you want to go. So I would assume that that's part of discussion, like the reality of where people live and what they do and the decisions that they make for themselves.

Scott Benner 31:06
Does the phrase pass the buck translate for you?

Julie 31:09
Yeah, pass the puck to the GP. Yeah, for sure,

Scott Benner 31:12
the buck. But I love that you said puck and you're Canadian, pass the buck. It's a, it's a, just a term that means, make it someone else's problem, pass it on to the next person. And it just, it feels like that. It feels like the patient is saying, Well, the doctor should tell me what to do, and the general practitioner says, Well, I told them what to do, and they don't do it. And then you get to a hospital setting where they go, that's not really our job. You know, that's somebody else's job. So there's three people involved in this trifecta, and not one of them steps forward and says, Hey, you know what? I'm gonna make up the deficiencies of the other two here. I'll fix this. That's not the case. Everyone just passes it back and forth to each other, and that sounds like I've had a lot of these conversations this year, Julie and over and over again, that's what I'm hearing. I'm hearing that the doctor didn't tell me the system's not set up for this. If you had better insurance, I don't have the time to sit with patients like that. They're all, I mean, reasons, but they sound like excuses. If you're at home, you know, if you're at home with a 10, a one sitting, your life's being shortened. They're excuses, right? They're not reasons. I mean, not unlike a lot of societal conversations, this is as far as this conversation goes, because there's never anybody in any scenario willing to say, hey, you know what? You're right. Throw that on me. I'm going to take care of it. There's always for good reasons. I'm certainly not coming down on you, but you said earlier, your son's blood sugars stay higher than you want them to be because you have limited resources too, right? So, you know, I keep having these conversations looking for an answer, but the answer over and over again, seems like you know, this is it. We'll just like, see where the chips fall. And some people get lucky, and some people have brains that lead them to understanding their diabetes better, or the tools or the, you know, what have you, the education, and they actually follow through with it. And some people don't, and those people are lost, and there's nothing we can do for them. Can that be the truth?

Julie 33:20
A certain extent, you're probably right, yeah, and not every professional is a go getter same way as like, there's a lot of times, I guess, over time, I understood very well that a lot of things, it doesn't matter who does it, as long as it gets done and I end up doing a lot of job where I work, that is not exactly my job. Oh yeah, hopefully, oh yeah. But some people are going to be like, I will fix problems, and some people are going to be shoveling in the the next person's turf, yeah. And in the end, yeah, that definitely happens. Not everybody, as I said, is a is a, let's get this fixed.

Scott Benner 34:01
The way I always think about it is that it sometimes seems to me that people work harder at not doing their job than it would have taken for them to do their job. You know, there's so much effort put into not doing something. It's fascinating. It's funny. Like to give you a personal perspective, I guess that's not my personality, so it's confusing to me. I think that people might think, oh, Scott's trying to get to the bottom of how this happens so we can fix it. I'm just confused by it like I don't imagine it's fixable. I'm just baffled by a person who has a medical issue that says it's alright if this kills me. I'm baffled by a doctor who looks at somebody who's on their way out and goes, they should have tried harder, you know what I mean? Like, I don't understand that at all, but my brain can't make sense of any of that, and so I keep having these conversations, hoping that someone's going to pop up at the end and go, You know what we should do, or that this big idea is going to jump up into my head. But so far, the best idea I come up with is make all this information available on a podcast, and the people who want it, who can find it, and the rest of them, I guess, won't, but at least they had a chance.

Julie 35:11
But this is why podcast is so valuable. Yeah, I know, but it's not but it's gonna be valuable for the people who are go getters that want actually to do something about

Scott Benner 35:22
it, or even are lucky enough to a trip over it, because there are, oftentimes, people are go getters, but the help they find isn't valuable to them, but they stick to it because they think they found it, and then they have middling results, and they say things like, oh, diabetes is so hard. I mean, I have a seven and a half a one, and say it's the best I can do. You know, like, like, that kind of stuff, when they just don't have the other ideas. It seems like to me, as crazy as it might sound, because I'm the one that makes the podcast, and I do know how valuable it is to people, because I get to see the feedback, but

this shouldn't be the answer.

You know, I'm saying like, this should not be the answer. And yet I understand that it is sometimes because I had a conversation with a like a lifelong type one just this morning, person I hadn't spoken to in such a long time, and they were telling me about their burned out and they just don't take care of themselves. And and I was like, Well, you know, what is it you're not doing and it's like bolus thing for food. I said, why not? I just think, can't bring myself to do it, and I didn't even know what to say. I said, you should probably get a therapist. Because what I wanted to say was, just do it. I mean, who cares if you want to do it or not? This is an obvious one. It feels like they sunk to the bottom of a four foot pool and can't go to the trouble of standing up and that they're like, No, you don't understand. Like I'm depressed, or I just can't bring myself to do it, or I'm so burned out I don't understand that's the thing Julia. I don't get I don't under I don't get so burned out that phrase, I don't understand it. I don't have diabetes, but I've lived a pretty horrible life. At times, I've been flat broke. I've been, you know, destitute as a child, I don't understand you don't get up in the morning and fight. That's the part that I can't I can never wrap my head around I guess so. Anyway, it's depressing joy,

Julie 37:18
but it's a reality like you and I are more intrinsically motivated than the average people. Probably

Scott Benner 37:27
I don't even know. Like, I can't even tell if that's true. Like, I don't want to take credit for something that feels so human to me. But I guess the same would go to, you know, finding fault with somebody that's, you know, experiencing something that's so human to them. Like, maybe a lack of motivation is just their is their base setting, you know, which I don't know that that makes it bad. It just makes it who they are. And if you give that person a life without diabetes, they're probably okay, but you drop diabetes on top of them, and now that's a person who's going to struggle more than the next person does, like, you know, when Jenny's on the show and she talks about her care. It all just it feels so easy, but I try to remember it's easy because that's her personality.

Julie 38:09
Yeah, you don't need to tell her that she needs to do it. She just knows and does it. Yeah, but for a lot of people, it feels like so much effort.

Scott Benner 38:18
If we translate that back into the medicine. Are there many more people who lack the motivation to make a difference than there are those who want to make a difference?

Julie 38:28
Um, what do you intersect more these days, post covid With, with all the trouble with mental health, there's a lot of people that are not able to get themselves out of the hole that they dug or not? Yeah, that's a heavy burden for the system. No, yeah. Because even, even if you you fix them from one standpoint, like you take months and months of rehab and all that stuff, it doesn't mean that they're gonna get to the end and not do exactly what they did in the first place.

Scott Benner 38:58
And so those people are, I guess it's a burden to the system because they're patients, but also I'm going to assume a number of them are actually employees, too, who are who are experiencing these same things. Now, if everyone's a little more depressed than they used to be, there's going to be more burden and fewer people to help you dig out of it. Yes,

Julie 39:19
and like, if I look where I work, covid was extremely difficult. Like anywhere else, we've lost a lot of nurses that went for better quality of life jobs that went for some of them probably are on sick leave, and I just don't realize that they're on sick leave, but a lot of them have left to go for a job that's not so emotionally taxing. So the people that come in to fill the gap are new. They're not, they're not the people that have the experience of the very heavy ICU that takes the people that don't fit anywhere else, right? And so, yeah, you end up with people that are very competent nurses, but it takes time for them to get on top of the skills you need to. Keep people alive and those kind of situations, right?

Scott Benner 40:02
Yeah, so there's a training period that's going on, and possibly you've hired people who, in the past you would have overlooked, because they wouldn't have been what you wanted for the position. But now you might have to take them, because that's what that's what exists,

Julie 40:15
probably, and that exists also in hospital pharmacy, in the sense that there's extra school, and you can do past your your basic pharmacy degree, typical hospital pharmacy, but there's just a few of them. And so those people, when you hire them, they're like gold stars, and they they can pick up and they already know what they want to do, and they're very proactive. But then you end up having to hire some people who have been working in the community for a number of years, or have been just finishing their degree, and those people to get them up to speed in a tertiary center with like, very specialized area and very sick people, it takes time, and it's not like you can give them a pill and they suddenly know everything, like everybody in that place learns new things Every day, even after 25 years of working there, I wonder

Scott Benner 41:03
how much AI, for example, will help in the future with medicine and with the patient side and the follow up like I wonder if some of these people could be caught by their phone literally telling them, you know,

Julie 41:21
don't forget, and refilled your meds for the past two and a half months. Yeah, right, I could definitely see that. And there's already like, not exactly AI, because it doesn't think by itself. But there's already like, Alberta, and that exists everywhere in other settings too. Yeah, we bought a big software that replaced everything a few years back. And that software makes connections or allows for to get to documentation from the past, so much more easily than paper charting. And it flags for interactions, it flags for odd doses of of some drugs, it flags for a lot of different things. And so that allows to have the prescriber not necessarily know all that stuff, but gets flagged, sometimes flagged too much and flagged for stuff that's insignificant, but yeah, the computer is helping out to to have to catch more potential mistakes or dangerous doses?

Scott Benner 42:26
Yeah, I think it has to be a combination. I really think that. I mean, I'm doing something right now. I don't think I've said it out loud on the podcast, yeah, but I'm behind the scenes. I'm busy cataloging the podcast as audio files transcribed by AI so that you can, one day ask an AI bot a question about type one diabetes, and it will access the entirety of the lifetime of the podcast to find the answer. That's wonderful. So yeah, try to imagine the internet, but it's just for type one diabetes. And this, you know, this AI bot can literally take your question and go find all the answers and give you an amalgam of that answer. And I'm, I'm just doing it, you know, I'm in the beginning process of it, and I'm very scared that at some point it's going to become a financial burden that I can't carry to make it happen, but so far, it's something I'm able to do behind the scenes. It's tough when you live on ads like you know, it's not a thing I can sell ads on or anything like that. But I want to try to leave it behind, because I'm very scared that everyone's conversations and thoughts, you know, that have been poured into this now to almost 1200 episodes. I don't want them to be lost, because I think, I think the the secret to a lot is held within these conversations in this podcast. So that's one of the things I'm trying to do. But I could also see where you could, one time, go in and tell this, tell something one day, an app. Look, I have type one diabetes. I need to be reminded this is where I get my insulin from. I need this to happen. Like, I need you to remind me it has to be ordered three months before. Or, you know, I have to make sure my insurance covers it. Like, keep bugging me, keep telling me what to do, prompt me to do these things. Because I think if that doesn't happen. It's difficult, it's too much for people, and it doesn't like the care of a chronic illness. Doesn't mesh with a modern American lifestyle. Does that make sense? Yeah, yeah, like you said to me this morning, I you know, I said, How are you said I'm tired, right? And you're tired because there's more things to do than time, and so you're giving away sleep to do things. And then I said, I just woke up at 430 this morning to do things I didn't have time to do. If I would have woken up at seven o'clock, and I'm not going to be bored today. And in a life that goes like that, how do you remember to order your. Android in six months, you know, like that kind of stuff.

Julie 45:03
That's exactly the kind of challenge I have with ADHD, because that's what the that brain is lacking, the ability to remember, to do the little things like those. The people with ADHD end up in trouble with paying the bills with appointments. They're like, chronically late or disorganized and unable to have the right things when they need to.

Scott Benner 45:26
Yeah, but I think it's more people than just ADHD. I think that, yeah, where ADHD is

Julie 45:31
5% of your population, which is one in 20. So if you look at a room with 100 people, there's 550,

Scott Benner 45:38
I'm saying that, that even if it's not diagnosed. ADHD, I think more people have that than not like I think you see, in a family setting, you know, a mother a father, in a classic family setting, and a bunch of kids, somebody takes care of things. Everyone's not on top of everything, no.

Julie 45:55
And if it's, if it's a genetic, genetic condition, you're likely to have parents that are just as messy as their kids. Yeah,

Scott Benner 46:01
right. And then good luck. And I've had those conversations with people too, where they're like, Listen people as adults. They say, look, as a kid, I was not on top of things. My parents weren't either. And sometimes you hear it as, like, addictions too, like, I didn't know what to do with my diabetes. I turned to my parents, and they're using meth, so they weren't much help. That's not a thing I made up. That's a thing from an actual conversation. So you know, like when there's all these things going on, you're already seeing the ball being dropped in so many walks of life, this is the wrong path to go down. But a lot of people's trouble in day to day life stems from their own poor decision making. And it's not like poor decision making, like they set out and did the wrong thing, or they decided to snort coke today instead of going to work. I even mean like simple, make a left, make a right, do this, do that, you know, pay the bill today. Pay it tomorrow. Like people so frequently, make these little micro decisions poorly that it it throws them in a completely different way. They don't even realize it's happening. And, you know, like, when that's your MO, big things are really going to get booted you know, like, like, the big things are really going to get messed up. Like, when you see somebody who is, I don't know how to use an example, like, when you, when you, when you see somebody who goes to the gym three days a week, and they're fit and they eat well and everything. If you go look at their life, their lives are very much like that. It's because it's who they are. And if you go find people whose lives are scattered, you'll often see that their health is scattered, or that other things are dropped. A lot of balls are being dropped here and there. I don't say it's out of malice. I just think it's who they are, and then that's how it goes. I joke with my wife all the time, if it wasn't for me, we'd be broke, and we all laugh about it, but it's true, like my wife doesn't pay attention to money the way I do. If it was up to my son, he wouldn't have thyroid medication. He's 24 years old, like, I'm still the one that says, Hey, do you have your thyroid medication? You know what I mean? Like, I'm the person in that house. Now, my wife is completely capable. I'm not saying she's not. My son's capable. Everyone's capable, but there's only one person in this house that has a caregiver mentality, and that's me. And so if you don't have that, and you're by yourself, you need help. You just do and you know, I'm sorry. It's just, it's, it's upsetting to me, because I get to, I get to hear all these conversations from different perspectives all the time.

Julie 48:33
So sometimes I'm used to be, I used to be that person in my household, too. I imagine you are, yeah, the one that plans ahead. But that being said, I calm down, probably my my own anxiety by planning.

Scott Benner 48:46
Oh, really. Oh, that helps you. I would love to stop helping people.

Julie 48:52
No for me, it it helps because otherwise I get upset at as how messy they are. No, like, how disorganized, how I don't know, so planning helps me.

Scott Benner 49:04
Yeah, I get that. For me, it's all very much about health and forward motion. I only get upset if people aren't healthy or moving in a good direction, like those are the things that upset me. If I see my family struggle that that's where it gets me. The rest of it, they can do whatever they want. I don't care. And there's a big part of me that would like to forget about everybody and just be a lazy person once, but I don't even know what that feels like. I realized the other day I was watching a football game standing up, and I was like, why am I not seated while I'm watching this? And I really I was like, I was in the kitchen, and I'm like, why am I not like? I woke up in the morning. I said to my wife, I really want to watch that football game at six o'clock tonight. She goes, nobody's stopping you. I was like, great. And then six o'clock came, and I'm like, you know, I start watching the game, and I'm watching it from the kitchen, and I realized, I'm like, I'm doing the dishes. I'm cleaning up. I made some food. Food. Like, no one asked for food. I just started making food. I was like, You know what? I have sausage and shrimp. I think I could put a pasta together. Do I have tomatoes? I do. I made a sauce. Like I did the whole thing. And I'm like, watching the game, and I'm like, No one even asked me for this pasta. When it got done, they were like, what's this? I'm like, It's dinner. They're like, Oh, okay. And then I had that thought I was done and I was cleaned up, and I was like, I'm not sitting down and watching this football game. And I thought the majority of Americans watching this game right now are sunken into some sort of a sofa watching this game. And I'm not. And I just, I don't know what that is about me,

Julie 50:33
just like you, I would be running in circles too. Yeah,

Scott Benner 50:37
I don't even, I don't understand it. I came in here this morning to do something that had to happen in this room that had nothing to do with the podcast. And then I realized I could do it while I was doing something else. So I sat down and was hanging I was writing out bills. Basically, I was paying bills online. So I was paying bills online on on one screen and on. And I happen to be lucky enough, I have two screens. I record the podcast on one computer and I do my work on the other. So on the one computer, I was paying the bills, I turned to the other computer and I started writing an email to the advertisers about why podcasts are such good ways to use your advertising dollars. I was sending them facts and figures and like opportunities to to they're all already signed up this year. I'm like, selling them for 2025 already. I'm like, it's in January, Julie,

Julie 51:35
I hear you. I'm the same way.

Scott Benner 51:38
And I'm like, and I'm putting this email together. I'm like, Ooh, is this good? And I'm paying my bills the same time. But I'm a very relaxed person. I love calm. I love sitting around. I love being relaxed, and everything else. It's when I get around other people that I care about that I worry about them more than I do about myself. And so I just everyone needs a little bit of that because, I mean, I'm I have enough of it for everybody who listens. And I actually, I saw somebody respond to me on Facebook the other night, and she said, I'm just here to say how much I appreciate the effort that must go into making that podcast. I know many of us here would not be as healthy without it. And a lot of people came in to kind of like, jump on and say, Yeah, me too. And I was like, Oh, this is the one place where my energy doesn't get split between people, because the delivery service works the way it does. I'm basically talking to one of you, but it's many 10s of 1000s of you that can, can still hear it. It's still my one effort of time. But I don't know, like, I want everybody to be okay or better than they are. And it can be frustrating sometimes to look up and see that they don't want that for themselves. They need it, and they're looking for it, but they don't want it enough to do it. I guess it's hard for me to say, anyway, I'm so sorry. Don't be sorry to kind of to go back again. You said, like 20 minutes ago. You try to explain this to people in the hospital, like this, your new understanding of diabetes, but you don't think they get it, or they don't have time for it, or they what is it? It's not

Julie 53:17
necessarily lengthy discussions. I need to take the opportunities that I'm given and not expect to have a three hour discussion with anybody, because, as I said in ICU, everything is not everything, but a lot of things are foreign to everybody. No, it's a very different setup. But the one part I can do is when I make suggestions on how we could adjust people's insulin, I try to give an explanation to go with it. You know, sometimes you have people that come in that are, where are the people who get a tray and eat food? A lot of them are fed either through their veins with parenteral nutrition or with two feet through their nose in the formula, yeah, form. And a lot of times people come in, and not often times, but once in a while you have somebody that comes in that just has basal and a correction scale, and you kind of have to explain to them that this will work until it doesn't work. If your patient starts throwing up, then your basal is too much, and you need to kind of AIM roughly for like a 5050, and you have to explain to them that when you're fed around the clock like that, you cannot just put the B bit on the usual like Umu log and Lentis or whatever it is, and hope that it's going to work. You actually need to have your basal and then you need to have a proper human and R every six hours, because your carbs don't go in like a big meal at once. They come in trickle over time, and you have to do it every six hours, no matter how convenient or not convenient it is to get poked at midnight, it becomes the way to keep a better care of your blood sugar, because we don't see what happens in between the month. Ring, you know, like when they poke four times a day, plus when they're worried. That means that you get four numbers a day. You don't know what happens in between the two. You don't know if you give them your log and they bought them out, or they get close to it. You won't know unless they are actually able to tell you, or they physically show signs that they are hypo and same for the highs. And then sometimes people, there's often times people with delirium, that the fact that their blood sugar swings around or goes all the way to three, four hundreds during the day is not necessarily taken into account as part of why their brain is functioning so poorly. Yeah, I know. So I'm able to, as I said, not necessarily have a three hour discussion at once about diabetes, but like, put bits and pieces of explanation as we decide to to make changes, or as things change. Patient was eating a normal tray and is now tube fed. Or

Scott Benner 55:56
is it not possible to take a small squadron of nurses and, like, really drill down and teach it to them. Take five of them and just pull them aside, you know, a couple of hours a week.

Julie 56:07
And the unit I work on has 150 nurses,

Scott Benner 56:11
yeah, but I mean, if you like to put a seed down, like to put a handful of them into the pool that really understand insulin, how it works, and how to manage and then, you know, start off by putting them on the people with diabetes, and then pair them with somebody else to watch what's happening till they can learn. Like, is there not a way to teach people this? I mean, I learned it myself, and I teach people without even them being with me. Like, is there not a way for them to learn how to do this?

Julie 56:40
The nurse usually has very little to do with the adjustment of the regimen. Like, other than what, no, when they aren't an insulin infusion, they're the ones that they're given a range of blood sugar to target for. Yeah, I know. And then they will adjust the infusion up and down to achieve that. But beyond that, like in the B bit, per se, they don't necessarily adjust. They are going to do what they're told, right? And they have also, a lot of them have quite a bit of experience that makes them refractory to change,

Scott Benner 57:12
yeah. Oh, you can't teach an old dog new tricks. Is that the same?

Julie 57:16
No, but when we're, as I said, like when we do rounds, like when we spend half an hour talking about each patient every day on rounds. Well, the stuff that I teach a resident through little bits and pieces while the nurse is there to listen to as well. And so you hope that some of it, I don't want to become also a one woman show that talks about diabetes all day long, but doesn't do the rest of it. Yeah, yeah, there's limitations, because even my colleagues wouldn't be, I don't think would want to do any of this, like they would feel at loss, just like I was before my son got diagnosed. Yeah,

Scott Benner 57:51
I hear it, okay. Well, this is depressing,

Julie 57:57
but this is but it's just a context that's very difficult with people that don't have the reflexes that you and I have every day,

Scott Benner 58:05
yeah. Well, also it for people listening. What you have to take away from this? Have to take away from this, in my opinion, is the hospital is for emergencies. They are very good at emergencies. You break your arm, you have a heart attack, your gallbladder fails, they're going to help you, and they're going to do a great job at it. You know, you have cancer, you go to a cancer center. Those people know how to help you, like that's that's the stuff you want to go there for 100,000,000% if you're having heart issues because of your type two diabetes has been out of control for years. And you go to the hospital, they're going to help you as best they can with the emergent problem you're having with your heart. They are not going to help you fix your type two diabetes. And I think that that's mostly what we have to change in impatience, is the idea that there's a magic place, somewhere where everyone knows everything. And if I go there, it's all going to be

Julie 58:56
fixed, you know. Or they will, they will get the ball rolling, but

Scott Benner 59:00
you have to pick it up and keep running with it exactly. Yeah? Well, in a world where people can't remember to take vitamins, I'm sure that this is going to be no problem. Everybody's going to take care of it right away. You gotta, I hate to say something cliched, but you have to prioritize yourself. Yeah, obviously, yeah. I mean, it is obvious, but doesn't happen. It happens for nobody, hardly ever. And when it does happen for them, they're they're doing it on Instagram, and we're all laughing at them for being in the gym for nine hours a day. There's not many examples of just average people putting in the average amount of effort that keeps you healthy, instead of, like, you know, making it their entire life so that they can stay focused on it, which I think is, is partly true. Like, I mean, I You see, that was one guy, he, like, runs like, 10 miles a day or something like that. And I'm like, Yeah, well, that's your brand. You sell that. Like, you have a podcast where you make money talking about how you run all the time. I can't go running for 10 even if I could run 10 miles for. Am I going to find that time at I make my money a different way? I have to be here in front of this computer doing this thing, I don't know, just do the best for yourself. You can. But don't give up, and don't ignore it for God's sakes, like, just put your best effort into it, you know. Or otherwise, you're going to be 63, years old one day sitting in a doctor's office, and they're going to tell you something that's going to sound like, Oh, that wasn't supposed to happen until I was 80. Not a lot of coming back from stuff like that. You know, at a finite amount of time to take care of yourself, the work you put in now, almost in everything you get paid back later with it. And that might be some of the problem, too, in a society where everybody's used to getting something immediately, you know, the work you don't take a vitamin today to feel better today. You know you might not even notice it, even when it's helping you. I think that's hard to wrap your head around. Sometimes, anyway, you have any parting words, Julie,

Julie 1:00:54
yeah, make sure that you're part of the priorities. Self care is definitely worth it. It's worth it to let go of some little things that, in the end, don't matter that much, to make some space for yourself.

Scott Benner 1:01:08
Yeah, that's good advice. Also, can I show off a little bit from my high school French class? No means nine.

Julie 1:01:14
Good start. Good start.

Scott Benner 1:01:16
It took me three years to learn that. I don't have, I don't have that kind of time to put into the rest of it. I might know a couple of the other numbers, but I don't want to show off, and my accent is not good. Save that for the next podcast. Yeah, yeah. We're gonna save it where I go, like, I can maybe get this, yeah, maybe five or six I can get to. And then there's some loss in there, and I know enough means nine, and then that's pretty much it. I do remember my French teacher was very pretty, but that didn't seem to help anything.

Julie 1:01:47
See my husband, he's born and raised in Edmonton, where we are, and he told this French teacher in high school, like, why am I doing this? For not knowing that he was going to marry me? So obviously,

Scott Benner 1:02:00
he had a good reason. By the way, if my French teacher was in her mid 40s, as I expect she was, that was 37 years ago, she's 82 now. So hurry up and figure your stuff out, because time goes by real quick. Bud down, if you're out there, I didn't understand a goddamn thing you were saying. Hilarious. All right, hold on a second for me, Joey, please.

A huge thank you to one of today's sponsors, gevok glucagon. Find out more about Chivo hypopin at gevoke glucagon.com, forward slash juice box, you spell that G, V, O, k, e, g, l, U, C, A, G, o, n.com. Forward slash juice box, a huge thank you to ever sense CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the ever since CGM, you just replace it once every six months via a simple in office visit, learn more and get started today at Eversense cgm.com/juicebox, the conversation you just enjoyed was brought to you by us. Med, us. Med.com/juice, box, or call 888-721-1514, get started today and get your supplies from us. Med, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective, the bold beginning series from the juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to juicebox podcast.com and click on bold beginnings in the menu. 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. 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.

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