#186 Diabetes Hiding in Plain Site

Laurie didn't tell her children that she had type 1 diabetes…

Laurie didn't tell her children that she had type 1 diabetes but she became more open when her oldest son Ryan (from episode 179 - Behind the Cheese) was diagnosed in his late twenties. 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - google play/android - iheart radio -  or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

---

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, everyone, welcome to Episode 186 of the Juicebox Podcast. Today's episode is sponsored by Omni pod Dexcom and dancing for diabetes. You're going to learn more about each as the episode goes on. But for now know this Omni pod is the tubeless insulin pump that Arden has been using for a decade. We absolutely love it, you can learn more about it at my Omni pod.com forward slash juice box. Dexcom, of course is the CGM that gives us all the information that we use to make the decisions and do the things that we do with that on the pod dexcom.com forward slash juice box for more information about that. And dancing for diabetes is just the beautiful little organization that helps kids living with Type One Diabetes through dance, and all they want from you is to check them out dancing the number four diabetes.com Maybe you remember back in Episode 179. It was titled behind the cheese. And we spoke with Brian, who's a gentleman who was diagnosed as an adult, his 20s. And he spoke a little bit about how his mother also had type one diabetes, but the entire time he was growing up. He didn't know because his mother hid that from them. Well guess what? Today's episode is with Ryan's mom, Laurie. She's had type one for over 40 years, she's gonna share her entire story with us, including why she felt like it was necessary and needed to not let her family feel burdened by her type one diabetes. Two things to remember one nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise. And always consult a physician before making changes to your health care plan. And to consider this if you haven't listened to Ryan's episode, behind the cheese. I think you should stop this one and go back and listen to his first you don't have to, but I would.

Laurie 1:57
Hi, I'm Laurie. I am a type one diabetic for about 42 years. And recently had a son named Ryan who was on the podcast who was also diagnosed at 27 years old. Also type one.

Scott Benner 2:13
So let's go back over Ryan for a second. How old was he when he was diagnosed?

Laurie 2:18
About 26?

Scott Benner 2:20
How long ago was that now?

Laurie 2:22
About a year

Scott Benner 2:23
about a year ago. Okay? Yeah. For people who listen to the podcast regularly, you'll be thrown off by the immediacy that you get to hear Lori's interview. So Ryan's interview was done many, many months ago, but it ran just recently, it's Episode 179. It's called behind the cheese. I think if I'm not mistaken, that's a reference to where his mom might have hit her insulin when he was little. Yeah. In the course of me talking to Ryan, he said, You know, I usually ask like, if there's family history and things like that, and Ryan really kind of took me by surprise, telling me that he grew up with a mother who had type one diabetes, but they didn't know it. Right. So that's what we're gonna get to. But first, Laurie, I don't want to out your age. I don't need that. Okay, but how old were you when you were diagnosed?

Laurie 3:09
I was about 15.

Scott Benner 3:11
Okay. Do you have any recollection of that time,

Laurie 3:15
um, it's a little bit foggy. But I do have recollection, I'm actually sitting right now in the room that I diagnosed myself, which is why it's so interesting. I just remember having extreme weight loss all of a sudden, extreme thirst like my mouth felt like I had a bowl of cotton in it. And the more I drank it, just, you know, never got better. It actually got worse. I remember back then friendlies was a very common restaurant to go to when I would get fribble, which is probably just like a thick milk milkshake filled with sugar, which made it worse. But one day, and then I just started generally feeling sick. I was in high school. And then I went to the encyclopedia, because at the time, that's all we had, I know everybody's going to be laughing at the younger generation, because I literally went to a jet encyclopedia, I opened it up. And I don't know why I knew right to go to diabetes. I don't know anybody who hasn't nobody in the family. None of my friends. Nobody. And I opened it up and there was the diagnosis. And I was like, that's what I have. And then I told my mother, we have to go I think that's what I have. And it was like, that's what I had. That's insane. Yeah, yeah. The Encyclopedia

Scott Benner 4:25
encyclopedia which you think young people are laughing young people right now are going I don't know what that is. They're going to find out what an encyclopedia is. I I am Laurie, a little younger than you I think. And I remember my parents buying encyclopedias on a payment plan that's how broke we are. So we would get we got like a through you know, whatever it was, and then they'd make payments and slowly the next and the next and next volumes would show up at the house.

Laurie 4:56
Oh, wow. Well, we we got our encyclopedia because I'm a very Close friend. We had a we had a set and then a very close friend was going through some hard times, I guess. And he was selling vacuum cleaners. So we bought a vacuum cleaner. He sold encyclopedias. So we had a second set of encyclopedias. anytime he sold something my parents were nice enough to buy it. So

Scott Benner 5:17
we had two sets. That's amazing. And a great vacuum. Yeah, so I'm guessing a Kirby cleaner? If I'm if I'm, I think it was just the

Laurie 5:25
regular regular or whatever. Yeah.

Scott Benner 5:29
All right. So so you so you died, I fascinating that you figured it out. You know, isn't it great that your parents made the payments all the way up to D? You wouldn't have known, you would have been like I might have I I don't know, if I haven't set the lightest or not, we get that we get we get? We get that volume coming. Anyway, so so you do this, go to the hospital? How did your life change then, as far as your medical procedures, because 42 years ago is before a lot of the stuff that we have now. So what did you do to manage yourself?

Laurie 6:01
Yeah, um, very little. I mean, there was not much for me to do other than not eat sugar, eat a lot of diet foods, which we now know, have carbs. But at the time, it was free, it was free. You know, you could I mean, diet, soda was always free, but you know, diet desserts, and, you know, now looking back, it's like, nothing is really free for the most part. So I remember that. I remember. Like my mother used to say, Don't stick your head in the sand because I was not really in denial, but I was determined not to let it get me down. determined not to let people know, and determine just to move forward. Almost pretend like it didn't happen.

Scott Benner 6:48
I was gonna say is that how the determination showed itself was it It wasn't like, I can overcome this because you didn't have a ton of tools to try to overcome anything with.

Laurie 6:57
I had nothing.

Scott Benner 6:58
I had nothing. So we for you. It was just like, if we just pretend this doesn't exist. That's me being determined. Is that sort of like like I wasn't there, or

Laurie 7:08
I didn't I I guess I kind of I acted to other people. Like it wasn't there. I knew myself. It was there. And I was very conscious of it every minute of every day, but it didn't. I didn't let other people know. So in that respect, yeah, it what I was in denial to other people. And which, which I still am To this day, basically.

Scott Benner 7:29
Yeah. What everyone doesn't realize yet is that this is sort of Lori's coming out party. So but we'll get, we'll get to all of that. The dancing for diabetes annual benefits show is coming up quickly. It's on November 10th. And if you live in the Orlando area, I cannot suggest strongly enough that you attend. Go to dancing for diabetes.com to find out more. That's dancing, the number four diabetes.com. And even if you don't want to go to the show, go check out the cute pictures of the kids dancing. They've got diabetes, so do you. And besides, what are you doing on the internet anyway? Just go do this dancing for diabetes.com. So let me ask you something because that long ago, I have a friend who was diagnosed when I was a teenager, and he would get up in the morning and say to himself, I think I'm gonna be a little active today. And I think I'll eat you know, and he would just kind of guess and this amount of insulin, he'd stick it in his belly in the morning, we'd be on our way and later that night around dinnertime he takes another shot. Was that I was that even what you were doing?

Laurie 8:36
or What were you doing? Know what I was doing was the doctor gave me I guess based on my age, my weight. Whatever it was based on, I really don't even know, he gave me a number. And that was the number i'd inject morning and night. Or more than that I it's really foggy, I think I definitely was on like I was on a mph and our that's what is regular an MPH. So he gives me and it sounded to made logical sense. You'll give me an amount for mph, which lasts 12 or 24 hours, that's your like bazel almost your background. And then the novolog, which was I mean, I'm sorry, that novolog it was the mph which is the long lasting and then the the regular, which you would put in the same vial. It was not the same vial of the same syringe, and you would inject at the same time. And then one would peak lunchtime and the other would peak later on. So it kind of made sense that one would take over and the other would stop and then the other would take over and the other would start. But what didn't make sense is there was no way to know what you were eating and how it was affecting you. And then you were panicking because you had to eat at a certain time. Otherwise, you know, you turn into a pumpkin. So that was life

Scott Benner 9:51
what happened when you didn't need a certain time.

Laurie 9:54
You felt the insulin reaction. Um but you know, then you started Also panicking feels like an insulin reaction. So there were times you'd start to panic because at the time, they didn't have any testing devices for blood sugar testing. So, you know, were you really feeling low and needed to eat something? Or were you just panicking and having a panic attack, so you never really knew what was happening, you never know what was happening. And then he was supposed to go to the doctor and tell them how you were feeling? Or they would do your blood, your you know, you're a one to hike. They called it like custom lated hemoglobin? And then he would tell you how you were doing?

Scott Benner 10:36
And how do you remember how you were doing quote, unquote, like,

Unknown Speaker 10:40
horrible, horrible?

Scott Benner 10:41
I'll say to you, Laurie, you're doing horrible.

Laurie 10:44
He would say, You're not taking good care of yourself with my mother sitting in the room. And the two of them would be staring at me, you're not taking good care of yourself, you really need to do a better job, you know, you this, this is really dangerous in the long run, you could be blind and, you know, there's a lot of complications, you know, you can lose your feed, and, you know, and and he was always asking me if I could feel my feed, and, and I'm sitting there, like, you know, being being accused of not taking good care of myself. When

Scott Benner 11:14
you were right. You were you were injecting the insulin the way they told you and eating times you were supposed to avoiding sugar and things like that. Yeah, yes. So yeah. So basically, if you look, when you look back on that now, do you know what was happening back then you recognize he didn't know what he was doing. And this was just the best they had, and your numbers were probably never gonna be what he considered to be good, right? no real way to accomplish that, I imagine.

Laurie 11:39
Right? Right. So, you know, I think the revelation really came when the Dexcom the Omni pod, you know, came out and I started to use it, because all of a sudden, the light bulb went on in my head, and said, all those people that sat in those rooms and blamed me my entire life, for 30, you know, five, whatever years, that it was my fault and that I wasn't doing the right thing I was I think that's part of the reason I was hiding. It was because I was always led to believe that I wasn't doing the right thing. And so shame on me. And so I didn't want people to know, because I could never say Oh, yeah, yeah, I'm really good control. I was not in good control. But I had no way of knowing what that even meant.

Scott Benner 12:26
Luckily, for us, it is not 42 years ago. It's right now in 2018. And there are amazing ways to help you manage your type one diabetes. One of those ways, is the Omni pod tubeless insulin pump. Now, Omni pod understands that it might be scary for you to switch to a pump, or even if you already have a pop, now you might, you know, be a little weirded out to go to another one. And that's why they offer a free, no obligation demo of their product, all you have to do is go to my Omni pod.com forward slash juice box or click on the links in your show notes are at Juicebox podcast.com. When you do that, you will fill in the tiniest bit of information, your name, your address, maybe a phone number, and you will push a button. And then the Omni pod demo will come to your house. This is where in the privacy of your own home on your own time on your own terms. You can take that pump that little pod and you can wear it, wear it for days, see what you think. See how small it actually is. See how it will fit into your lifestyle. Understand that after you have it on for a little while not long at all. I've won a demo pod a number of times, you won't even realize it's there. That will be the first step into you understanding that there is a world out there that is unencumbered by tubes and allows you to make these amazing adjustments to your blood sugar that will lead to successes and ease of life and happiness that you at this moment maybe can't even imagine. Please go to my omnipod.com forward slash juicebox. To find out more. There's absolutely no obligation.

Fast forward a little bit. You got married at some point, I imagine. Yeah. And you made some little little Lori's right.

Unknown Speaker 14:20
A few of them a few. How

Scott Benner 14:21
many kids did you have?

Laurie 14:22
Well, I have twins. I have Ryan is my oldest. He's 27. And I have twins who are just about three and a half years younger than he is also boys. I have three boys. So I managed to have Ryan and I have twins and I don't know how I did it.

Scott Benner 14:38
I really don't know how you met. So was there any kind of like right now, if you went into if you were you know back then if you were that age back then you went you're obese off said hey, I have type one diabetes and I'm going to have a baby. They would tell you that you had to have your agency under control and you couldn't have any spikes or real incredible lows and you had to be like in this incredible control of your blood. blood sugar in your and your type one everything to even consider getting pregnant. But did any of that happened back then

Laurie 15:06
the only thing I was told was that I had to be in good control. And I knew that I knew that anyway, I wasn't only doing it because I was having children. I mean, I was doing it because I wanted to live and live a good life. So, I was told that that I had to be in like, really, really, really tight control. And I was actually told I had to be in tight control before I even thought of getting pregnant, which, you know, was a good, I think that was a positive thing. So I went thick, I went three months before I decided to get pregnant to the doctor, they did my a one C, I must have starved myself for the three months, because I don't know how I did it. But I think I started with the 5.9 a Wednesday, I remember that number, which was like, crazy good for not really knowing anything. So and then he told me I was all set, I could I can get pregnant. So I knew that I can get pregnant. And the one question that we asked was, is this gonna affect my children? Like, will they will my children possibly genetically be disposed to having diabetes? And his answer was no, that type one diabetes is generally not hereditary. That's type two. And that there is a slight chance, but it's like two to two to 3%.

Unknown Speaker 16:25
He said, back then I think

Unknown Speaker 16:26
that's what they told me. I

Scott Benner 16:27
think they say now that you have your children have maybe a 10% over the whatever the national average is, you've about a 10% more of a possibility, a greater possibility, but it just sounds like it sounds like anything else with health is that they learn, you know, generation after generation too. And I'm sure he was giving you whatever his best information was back then. But, but the idea of being so harsh on you, that I imagine has stuck with you most of your life. Is it still with you now,

Laurie 16:59
it's, it's with me now. But it's with me in a different way. It was with me my whole life just being really angry, because everybody told me I could do better. And I didn't know what that meant. And I wanted to do better. I mean, I wasn't rebellious, I wasn't trying not to do well and take good care of myself. It just nobody really and nobody understood that I couldn't like I didn't understand why I couldn't I just didn't, I didn't know. And then when I did get the Dexcom and the Omni pod, all of a sudden, it was like that moment of that. I just open my eyes and I said oh my goodness, all my life. People are blaming me. And it was never my fault. It was not my fault. I mean, I always say it's like put somebody in a car, put blinders on them, and tell them to go and don't hit anything. Yeah. And then

Scott Benner 17:50
Yeah, I was gonna say that it's really interesting how people's minds work. I was standing at a baseball field recently and watching this kid work out for softball and, and she wasn't very good. Like, she wasn't bad, right? But she wasn't good. She just didn't. She was fighting against ourselves. I don't think she was the most physically talented kid. I don't think she had a lot of baseball knowledge, IQ, like where to go with the ball, things like that. And as she was sort of faltering at this tryout. The the father eventually I guess, got the best of me yelled to her to just do better, basically. And I thought to myself, this is no different than if someone said to me, Scott, you have to go dunk a basketball. And if you don't, you know, we're gonna, we're gonna scream and yell at you. And because I can't, like, I can't dunk a basketball, you could tell me the right things to do. You could I could do everything as well as you could explain it to me, I would never be able to jump that high up in there. I lack I lack something that would stop me from doing this. This girl lacked something that was making what was asked of her impossible. And it doesn't seem like people care about that. They just want you to get to this place. But don't offer you either direction. Or, or the the confidence to say like, How great would it have been if a doctor said to you back then look, I see you're doing your best. And, you know, keep going like don't stop them being positive because maybe they knew in the back of their mind. There was no best. They weren't giving you good advice. They were giving you the best advice they had. And I'm fascinated constantly by by how that works in people's minds, like their expectations for other people are, are always sort of interesting, I guess. Right? Right. So, so so when you have Ryan, you're How old? Um,

Laurie 19:37
I was 20 I was just about 30. About 30 years old.

Scott Benner 19:41
Yeah, you're married to a doctor.

Laurie 19:43
Is that right? Yes, I am. Okay, I

Scott Benner 19:46
am. Do we know Can we

Laurie 19:47
say what kind of he's that? Yeah, he's a podiatrist. He's a foot doctor. Yeah.

Scott Benner 19:51
Okay. So So is now you're married to a person has been through medical school. They've this your husband's already always known that you have type one.

Laurie 19:58
Yeah, because I met him when I was was 19. So I had already had it for four years. So he Yes, he knew he knew right away. Yep. So

Scott Benner 20:08
things are going good and bad, right? You've got diabetes, but you found yourself a doctor. So you're, you're on your way. Right. my buddy's a doctor, and he said, even when his boys were little he could see like neighborhood moms like buddying up their seven year old owners. Like he was like, come on.

Laurie 20:26
Well, being that it's my husband's a foot doctor, people just take off their shoes to him. Wherever we go, we could be in a restaurant. They're like, Oh, you're a photographer. I just want you to look at this. Just look at my toe. What do you think?

Scott Benner 20:38
A little less sexy version of being?

Unknown Speaker 20:41
I guess it could be worse.

Scott Benner 20:43
I hear what you're saying. He could be you know, a proctologist that would be so uncomfortable in a restaurant.

Unknown Speaker 20:49
Yeah. Yeah.

Scott Benner 20:51
Okay, so. So you you have Ryan now to back to go back to Ryan a little bit. Can you explain to me what he meant when he said, I grew up and I knew something was up with my mom, but I didn't know what

Laurie 21:04
well, I, I definitely hid my diabetes from everyone. I would never talk about it, I would never share it with anyone. I would never like nobody, nobody. I think only my best friend knew. And it was only because she was in school with me when I had to go, you know, I was in hospital for a few days, I was I was, you know, absent from school. But other than that, I never told anybody. So, um, when my kids came along, I didn't want I didn't want to show any weakness. I think that's like when I have to think about it reflect. I just didn't want them to see me any differently. Like, I didn't want them to think mommy's sick, or, you know, if mommy's eating candy. It's because she's not feeling well, I always wanted to be like, and maybe not the super woman, but you know, somebody who's somebody who's like, got their feet solidly on the ground. And just don't worry, like you don't have anything to worry about. And I really feel like if they knew they would have in some way, shape or form worried, and I just didn't want that.

Scott Benner 22:08
So your goal was just for them not to not to see you as in need in any way. Exactly. You want that you want it to be there for them. You weren't looking for them to be there for you.

Unknown Speaker 22:19
Right. Make

Scott Benner 22:20
sense? And your and your husband? What was his level of? You know, I guess, involvement, because you had kids? I mean, you were diagnosed when you were 15. But your kids when you were 30. So you would had diabetes for 15 years already? By the time you had kids. Yeah, my math is solid tonight. And so it's so anyway, and so. And so for 15 years, you've been living like this, how long have you and he'd been married prior to the kids coming?

Laurie 22:50
Um, we got married in 1980. So all before the kids like, a couple of years, three years, four years, we were together for long, like seven before we had kids, but married a couple of years.

Scott Benner 23:00
I get what you're saying? Yeah, little board. And here comes Ryan. I understand don't ya? Right. Don't let Ryan think of his life that way. But it's fine. keeping things moving. Yeah. So how like, but what was your husband's involvement with your diabetes? Was there really any? Well, I

Laurie 23:15
think he would have been very involved, and I let him but I didn't want anybody to be involved. Basically, there's nothing to be involved with. I was told to do certain thing I did it. I was told not to eat certain things. I didn't eat them. And other than that, there was no involvement. I mean, I think now the involvement is different. Because you have all these tools. Oh, what do you think? Should I decrease this? Should I it becomes a little bit more mathematical and analytical. Whereas back then it was just like, don't do this and do this and go to the doctor in three months and be you know, accused of not doing the right thing and come home. And then you know, we had to do yeah, so basically, what I did was I just didn't want to go to the doctor that became a whole big there other thing in my life is just not wanting to face the doctor because he wasn't helpful,

Scott Benner 24:03
right? So why Yeah, why go get your whipping? Right? When when not right? You're getting nothing in return? How

Unknown Speaker 24:08
right? Why would you?

Scott Benner 24:10
I don't want to put words in your mouth. But were you when it came to the diabetes? And were you lonely? Did you feel isolated? What? What was the? I'm sure that do you think?

Laurie 24:21
I didn't feel I didn't feel lonely because I mean, my husband was always there by my side if I wasn't feeling well, or, you know, just to vent to But no, I wasn't feeling lonely yet. Not at all. I didn't want to be part of that community because I didn't again, I wasn't in denial. I just didn't want to be part of a community. I just was fine. being by myself. I

Scott Benner 24:43
was doing fine. And I was just gonna go along and have nobody No, do you when you think about who you are? Like if I said you were to write down a bunch of descriptive words about yourself, how far down that list Do you think you'd get before you mentioned diabetes? very far. You just don't think about it like that, right?

Laurie 25:02
No and and yet, it's on my mind from the minute I wake up till the minute I go to sleep and and while I'm sleeping and waking up and checking my Dexcom. So it's, it's on my mind every second of every day yet. I don't want it. I never wanted it to define me. And it still, it still doesn't, you know? Yeah.

Scott Benner 25:22
So so when you talk about when Ryan talks about not knowing like, what lengths did you have to go to to keep them from knowing you had type one, like, what did you because when they're young, you're still basically sliding scale, right? Like, when did you switch to? I mean, I assume at some point, you switch to something like novolog and set and lava mirror Lantus or something like that, right? How well do you think Ryan was when you made that switch?

Laurie 25:46
Um, that was kind of life changing, because I felt like the Nova log at least gave me the flexibility if I didn't want to eat or, you know, one of the the different time I had the flexibility and again, it seemed like it made a lot of sense, you know, that, you know, you took the you took, what did I take in the morning was something like 11 in the morning, and that lasted, you know, till the night and then the novolog was just in between when you wanted to eat something. So, that kind of made sense. And that was like, one of the things that changed my life for the first time. Do you remember?

Scott Benner 26:19
That was like what, like, in regards to like year or? Or how old Ryan would have been around? Yeah,

Laurie 26:25
I don't I don't really remember. I honestly I don't.

Scott Benner 26:29
I'm just one and so because what I'm because what I'm wondering is, to what level did you have to go to kind of mask that you had type one because if it was regular an MPH, then you know, when he's little, I'm assuming you could inject right in front of them. He wouldn't even know but as he gets a little older, it's not like you're injecting 810 times a day. It's not like you're really even testing still. So you can just sort of morning and night and nobody can really see I imagine it was part of your your teeth brushing routine. Exactly.

Laurie 26:55
I always I always say that. I always say that. It was always part it was like you know you wake up you brush your teeth. I woke up I gave myself insulin. I went to sleep brush my teeth gave myself insulin. But I never let anybody see me in check anybody? Nobody? Nobody, not even my I mean, not that my husband had seen me this I'm going back way, way back. Not that he hadn't seen me but I just didn't do it in front of him just because I would just go in a private place. Um, until the pen came out then it was like I was doing it everywhere because you could just

Scott Benner 27:26
hide it was simple to do. You know, I want to point out very quickly for people that my analogy about around tooth brushing You and I have not spoken before about this. I'm very impressed with myself. Nevertheless, that Okay, so this all makes incredible sense to me. Like I I put myself in the mindset like let's for, for everybody, like who's just kind of like snowballing or spitballing. This number here, it's 2018. He said 42 years we were diagnosed what the end of the 70.

Laurie 27:56
Yeah, so I was 15. Yeah, like 77. Something like that. Yeah, yeah, it was right before I graduated graduate high school and 78. So yeah, 7677, something like that.

Scott Benner 28:07
This is the part of the conversation where if Arden was here, she told me old and I don't want to have no response to that. Along with it. So different. We're all different technology, different time. Everything's different. Right? You're you're pretty much kind of like, you know, shut out your husband, as far as you know, being around anything. You're trying really hard for your kids not to see how old was Ryan when the twins came?

Laurie 28:35
He was about almost there almost for a little less than for like three and a half, three and three quarters. Something like that. Yeah.

Scott Benner 28:43
So you're almost mid 30s then?

Laurie 28:46
Yes, exactly. 34 it was 34. Yeah.

Scott Benner 28:50
Yeah. All right. And And at this point, the Sharad of hiding the diabetes. Nothing's changed about that. Ryan's he's, he's heading off to school soon. How is it raising twins with diabetes?

Laurie 29:05
Um, I had a very typical pregnancy with Ryan and with the twins. Um, you know, my only thing was, I just, I just made sure that I was always high. Because to me, I know I've heard a lot of people say, I haven't heard anybody feel the way I feel actually, in any of your podcasts. I've listened to pretty much every one of them when I am high. And when I was high, you know, as far as my sugar is being my blood sugar being high, I felt I felt great. Not a care in the world. Not a care in the world because, sure, maybe I was a little bit thirsty, but I not not that much. Sure. I had to go to the bathroom a little more often, but not that much. But I felt great. I felt like I had no anxiety about going low. I wasn't afraid. I was on the top of the world. So I never felt sick being hot. You know, having high blood sugar.

Scott Benner 29:57
At that point. Did you have a meter that you were using more frequently?

Laurie 30:01
Well, again, you know, having, like, kind of what I said before was that, you know, people were always telling me to do better, but I didn't know what that meant. So having a meter and having a reading, I didn't know what to do with that. So if I was high shirt, man, I had to take more insulin, but then I was worried I'd get low. And so if I got low, then what? Then I wouldn't go in a car and I know I'd start eating a lot of sugar and candy. So I'd go high again. So it almost to me felt like why am I testing I don't, I'm just going from high to low to low to high. And I also kind of tricked myself into believing or felt, you know, had my own like rules that if I saw a one in front of it, I felt good. Like, if even if it was 199, I was like, Okay, great. Great. I got a one. Exactly. That's right, exactly. It could be 199. I'm like, All right, I'm good.

Scott Benner 30:52
I'm good. It's crazy. A piece of masking tape over the screen where the other numbers were just like one though, I got a two Nevermind. Well, that's but see that that's really important. Because I hear a lot of people say, I got comfortable at 200 or I found a 200 was a number I was comfortable with my child being at and then eventually you talk yourself into believing that that numbers okay. And and you do that by you know, you do that by you know, doing what you do you hold your fear up, you go Okay, well, listen, I'm afraid. So under 150 is not okay, because that's my fear spot. Yeah, and, and I don't want to be 250. And the doctor said, I can be anywhere from 90 to 180. So 200, really only 20 points higher than 180. So I'm doing great. And then you do that lot that you know, mind twisting math in your head to trick yourself into believing it, you're okay with what you're doing. And then that becomes normal. And then and then your body becomes accustomed to how it feels at that level. And, and I know that when I spoke to Ryan, Ryan, now that he has diabetes, I think he carries a little bit of guilt, that you felt like you had to keep your blood sugar higher so that you were okay for them. It's interesting. I don't know that he used those words. But I remember talking to him and thinking that that had an impact on him as an adult, probably as a child. He had no idea and he didn't care, I think but I got the feeling like he was aware of it now like now that because now he has context like he is right. Yes, Type One Diabetes has real context. So you said when you got novolog, you don't know exactly when that happened. But you know, when you when did you switch to a pump?

Laurie 32:35
Well, that I can tell you exactly.

Scott Benner 32:37
Ladies and gentlemen, the new Dexcom g six continuous glucose monitor is FDA permitted to make diabetes treatment decisions without confirming with a finger stick. What did I just say? Zero finger sticks. No more poking your fingers. Think about it for a second. Now think about this. You are anywhere in the world. And the person you love. Who has type one diabetes is also anywhere in the world. And right there on your phone, your Android or your iPhone, you can see what their blood sugar is. And not just the number not just Hey, their blood sugar like ardens right now is 114. But I can see that Arden's blood sugar is 114 and stable. But if it was falling, or if it was rising, the arrow that would indicate that fall or rise would tell me how quickly that rise or fall was happening. Is Arden 114 and just drifting down? Where she falling? Does she need to be notified? Think about it. Think about it. Now think about this. You listen to this podcast constantly. And I thank you for it. Go download some old ones, by the way. And you hear us talk all the time about art and say one see currently art and say once he is 5.4. And it has been between 5.4 and 6.2 for almost five years. How do we do that? With the Dexcom with the information that comes back from art and CGM. That's how we make decisions. That's how we say Oh, you know what, we missed a little bit on this Bolus for this meal, put in a little more insulin. That quick decision can be the difference between a spike and nothing. I want you to go to dexcom.com forward slash juice box go right now. So you can experience that comfort.

Unknown Speaker 34:25
When did you switch to a pump?

Laurie 34:28
Well, that I can tell you exactly what happened was I know that my doctor had been recommending a pump for many years. But to me I kept saying and what is it going to do? Well it's just a different way of administering the insulin you don't have to give you shelf shots. So to me, I didn't want that I had no problem giving my show. I mean nothing no problem. But you know, I was okay with giving myself shots. I didn't want anything tethered to me. I didn't want the string. I didn't want the you know the not the string the the tubing. I didn't want to have to put it you know on myself. skin, I am very vain. And I dress with, you know, nice fitted clothes and I didn't want and because I was hiding from everyone, I didn't want either the tubing or the, you know anything to show on my body. So if the only benefit was that I have a different way of administering it.

Scott Benner 35:18
Not enough of a bang for your buck, right? Not at all. I'm

Laurie 35:20
like, I don't need to I don't want anything. I don't want to be tethered to anything, my friends.

Scott Benner 35:24
Now friend Charles, who will never listen to this would say that the juice isn't worth the squeeze. That's very new york thing to say, I think so, and so. So you were just not interested in letting people know, obviously, from what you've explained to me so far, and everything I know, you weren't looking to announce to people, hey, I have diabetes. And this guy wasn't giving you because I have to say, saying that a pump is just a different way of delivering insulin is such an incredible understatement.

Laurie 35:55
But well, I know I see that now. Which makes me realize how little is that as we you know, I knows you always say how little the windows really know. And I've, you know, have a lot of experience recently with thinking this doctor that I go to was fantastic. And I I'm now that I know so much more recently, after having it for 42 years. The past year, I learned more than I learned in 42 years and realize that she knows it's a woman now because I don't go to the other man anymore. He retired. I know so much more than her that it's scary. I don't want to know more than her. Yeah, yeah. Well,

Scott Benner 36:30
I understand that. I also, as you've been speaking for the last half an hour, I've been wondering, and I didn't know if I should ask you because I didn't want to insult you. But now that you're you know, more freely talking and that you have diabetes, and you're seeing more community even if it's just this podcast, you found some sort of a community. Is there any hindsight about I wish I would have gotten involved earlier? Like maybe I would have learned something sooner or felt a different kind of comfort? Or like do you feel like you? Do you feel like do you feel like hiding it was didn't accomplish what you want to accomplish? Or did it accomplish what you wanted to accomplish at a price?

Laurie 37:12
No, I think that it accomplished exactly what I wanted to accomplish. And I'm I don't feel at all that I should have come out sooner. I mean, if I you know, should have let people come out of the closet, but I know I'm I don't feel it at all. And I still feel like I want to hide it. I do because I still think that people that are not surrounded by it and maybe even some that are still might see people as a little weaker. And I can tell you that because I work around people and I work in a school. And there are several children that have it. And I look at them. There's one little girl that I know she's well she's Middle School, she's some high school, and she has the Omni pod and she has the pump and anytime every Oh poor, you know poor I won't mention her name. But you know, of course, poor Susie poor. So Susie, Susie is eating more cupcakes and more candy than any of those kids in the room that are gluten free, and dairy free. And she's got her pump and she's going to use it. And so when she wants to cupcakes with frosting, the nurse has to figure out the calculations with her. And she gets her cupcake. So it's not for Susie. Or for there are people that say, why is Suzy eating a cupcake? She knows she shouldn't be in it. Why are parents letting her I don't understand just because they want you know, they don't want her to feel different. And I'm sitting here

Scott Benner 38:35
and that impacts you. Right that really impact you know, do you think that's a generational thing because I let me tell you this I saw my daughter on just last week, so this is gonna be like real time last Saturday. Arden played in three softball games, we got up at five o'clock in the morning, drove somewhere. God only knows where by the way if anyone listening has children, if you put them in a sport, you're gonna see just the worst corners of the world. And so we're behind like what I think might have been a sewage treatment plan or, or where they stored the garbage trucks for this towel on this baseball field. Right. And she played at eight o'clock. She played it at 1130. She played at one o'clock. We drove home. She got something to eat. She changed, took a shower, put on a bikini went to our friend's house for a birthday party. They're in the hot tub at night. There's a fire burn in the background. She brings home some pictures. It's her and her friends. And there's Arden in her bikini with her on the pod right on her thigh and our CGM sticking off of her hip and and she couldn't possibly care less than neither. Nor could any of her friends or the people around her. And so and so. I'm totally not trying to make you feel bad. But I'm wondering if and by the way, 70, mid 70s to you know the 2000s there's a lot of growth in society since then. viously Right, right. But But do you think that? Do you think that you just grew up around a bunch of people who weren't going to? Like it? Or do you and Arden did? Or do you think that you set an expectation and C's, she set an expectation and Susie setting and expectations and whatever other people think, then I can't curse on here but FM, right? Like, who cares? Who cares what other people think? And I get it, like, I totally get it. My mom is me, you know, older than you but more of your generation. And she certainly would be very careful to hide things about her life and my life and everyone's life. Um, you know, you know, and I don't know if that's generational or not like, I'm sitting here, I can't decide that while you're talking. I'm not sure.

Laurie 40:43
I don't know. I think I just think that because the technology right now is so great. And so unbelievable that I like I have never felt more normal in my life. I don't think anybody even five years ago, you know, from that generation, which is basically this generation, I don't think that they're, they're even up to speed on how fast things are and how it's moving and how people are really living like, you know, pretty normal lives with diabetes. And I feel like, there are a lot of people that have it, but not that many. I don't want to be the one to have to educate everyone, because I do like, Yeah, because I do feel like I you know, I've been around people that have told me things not knowing have diabetes, and I'm looking at them like, Are you kidding me? I don't want to be the one to go around educating everyone I'd rather just

Scott Benner 41:34
be trying to live now.

Unknown Speaker 41:35
Yeah,

Scott Benner 41:36
no, that's the goal. Right. That's everything. And I completely get that. So yeah.

Unknown Speaker 41:41
We you so you said you,

Scott Benner 41:42
you didn't want to pump? You said no to it. But what it's and by the way, people I don't pre screen what pumps people use before they come on the podcast. Okay, so when did you When did you get a pump then?

Laurie 41:55
So the first thing was the decks calm before the pump, and my dock my doctor, because so what was happening was, I decided I was going to take control, like, because the meters were better, and they were faster. And so I decided to get a better meter. And just really like I started to just think to myself, I really have to take control of this. So I'm just going to test myself. So what did I do? I tested myself, and I'm not kidding, probably 20 times a day. But guess what, I was doing a really good job, because by doing it 20 times a day, I was like a human Dexcom I could see what was happening five minutes, every half hour after an hour. So I went to the doctor and I started doing really well because I was testing all the time. And she thought I had OCD. And she thought I should maybe see Well, she didn't really say you should really see someone but I could tell that would have been the next comment. She says, That's ridiculous. You can't you just can't live your life like that. I said, Why? Because it's just not healthy. I said it actually is healthy, because I don't have the highs, the lows, or at least I'm able to catch them whatever. She said, A dex calm is for you. And so I started to listen a little bit and I said, Well, what is it? I said doesn't give you the number? She says no, no, it's not accurate. It doesn't. And this is only two years ago,

Scott Benner 43:12
which which version? Was it?

Laurie 43:15
Probably the G four or five before the G five. Okay. I think it was the G four or five. It wasn't much beyond you know, before that.

Scott Benner 43:22
I have to tell you, I was bolusing from the G five. I was Yeah, I wasn't even testing back at G five. But it's it again, you're getting it. Okay. So you get new instruments. How many years ago? Do you think? Just two years ago?

Laurie 43:34
Okay. Yeah, yeah. So what she said to me was you don't get a number the numbers and is not accurate. So don't even look at the number. But what you get is a trend. You know, you see if you're going high, you're just going low. She didn't even say there was like a margin of error. It was more like it's just not accurate. So you just could see I said, well, then what good is that? I'm actually doing better myself by knowing a number. Yeah. So um, but she said, but that's really what you need. And so the question of when I got it was when Ryan was diagnosed, because I was already like, I had already been in the motion of really taking charge and doing really well. But I didn't have any tools. So when he was in the hospital, in the emergency room, lying on the table with the 600 blood sugar and nobody was doing anything. I was sitting with him my husband and my daughter in law who is sitting on her cell phone, googling every everything there is to know about diabetes and more. And she said, Hey, Laurie, did you know and now you have to remember, I hadn't even mentioned it to her yet, or anybody. I mean, it hadn't come out. I wasn't talking like she knew I had it, but we never spoke ever right. So here he is on the table and all of a sudden, like my whole life spilled out. And she was showing me the Dexcom and the Omni pod and all of a sudden it was like, you know, like in The Wizard of Oz when it turns to color. That's what happened. That's basically what happened. My world went from black to color. And the minute that she said that we started looking, I realized I had to do this not only for myself, but I had to now do this for Brian and set a good example.

Scott Benner 45:13
So now I'm gonna cry because your whole life you were doing this one thing for him, and then it turned out the exact what you had to do. This is like an after school. Yeah. Right, right. Right. And listen, I, I have children, and I've had a child diagnosed with diabetes. And I know what it's like to sit in that room. I imagine it's no different at all. If you have diabetes, or you don't have diabetes, I think that it is. It's a defining moment in my life. I actually think harden, kind of like sarcastically a couple weeks ago, we dropped my son at college for his first year. Oh boy. And I told Arden privately I was like I said, if you didn't have diabetes, this would be the worst moment of my life. But the day you were diagnosed is still holding really strong is maybe the worst thing I've ever lived through. And so I have to ask in that moment, if she doesn't, if your daughter because what your daughter in law basically did right then is either she lost her filter about your diabetes, because she was so overwhelmed. Or she thought, Hey, lady, it's time for you to spill about this diet thing, right? Like it was one of the things she was she either wasn't thinking or was really thinking when she hit you with it. Do you think if she doesn't say anything to you, do you think you still have this moment? Dancing for diabetes.com? Dancing, the number for diabetes.com dancing for diabetes.com? Go to dancing for diabetes.com?

Unknown Speaker 46:45
Oh, have

Scott Benner 46:46
you heard about dancing for diabetes.com? I haven't. Well, you should check it out. Dancing for diabetes. Where do I find that? Well, odd us in said dancing for diabetes.com? Do you think if she doesn't say anything? Do you do you think you still have this moment?

Laurie 47:03
I think that if you just know my daughter in law, it's more about I see a problem or a situation and I will I want to help and that's with anybody, you know, any, any anything in anybody, even if you want to book hotel room or, you know you you want to buy a new pair of shoes, you tell her what you want. And she's already done the research for it for you. So that's just

Scott Benner 47:24
let her do her research. Basically,

Laurie 47:26
I was I mean, I actually I think she you know, she enjoys doing research. So I gave her something to do in a very horrible moment that actually really, really helped, distracted and just helped immensely. So um, you know, and then the minute I mentioned it, and I you know, I mentioned it to my other my boys, you know, my twins, for all about, you know, they're software engineers, they're all about technology, and you know, living in this generation, they all jumped on the bandwagon and looked it up for me. And they were, you know, telling me how wonderful it is. And I did this and that. So it just then it just became like a whole support

Scott Benner 48:01
group. For me. I was gonna say you created your own support group, right. And Ryan's diagnosis room basic. Right,

Laurie 48:06
right. And so he always says that, what happened, his diagnosis was the worst thing that ever happened to him, but the best thing that ever happened to me, that's how he always, you know, puts this whole diagnosis together. And then I always say, I don't know if you got this to help me become better? Or did I get this disease to help you to learn what to do? So it's, you know, it's all?

Scott Benner 48:36
Well, Laura, you're on this podcast now you just became part of, quite literally 10s of thousands of people's support groups. So it's just building on itself. And you're doing a great thing by by talking about this because your story is so uncommon, and and far reaching as far as time goes, like you start at a place where people who are diagnosed now can't even appreciate and I'm not scolding anybody. But listen, when I see people on Facebook going, Hey, my pump was supposed to last, you know, six days or three days, and it lasted two and a half days. I can't believe this Surma, can you believe that I lost my CGM signal for three hours today. You know, who can believe that? Laurie? Who Yeah, who was at home going? I don't know what to do. Just stick this stuff in this syringe and let's get going. And yeah, you know, things have come. It's hard to picture when you're in the moment of it. These things have come so far. And to your point. It used to be I've said this in the past, but it's worth saying again, my daughter's had diabetes for 12 years. And um, you know, we're, we're amateurs compared to you, right? But But 12 years through a specific span where I can tell you that advancements from diabetes companies didn't used to come every four months. It was it was Hey, we made a meter Right, and that was it. And two years later, someone else will be like, hey, our meters a little more accurate than that meter, hey, we made a pump. And that was it. And then you didn't hear from again and again, again. Sometimes you hear people complain, hey, they have a you know, innovation in Europe is going faster, because the FDA is not just you know, isn't there and you know, the, what they do in Europe's not as strict and you'd hear that complaint, what's wrong, I'm telling you right now, I can have Dexcom word around the pod on this podcast three times a year to give you new news about what they're doing. Yeah. And their did not used to be companies didn't push innovation like this, until a my opinion until Dexcom. When Dexcom came along and said, Look, it's our goal to show you the in the you know, the reason your doctor told you it's the direction not the number is because, you know, when that technology first started that that's not wrong, you know, Arden had the Dexcom seven, or the Dexcom, seven plus, which was before the g4. And to say it wasn't accurate, is to say that back then maybe it would say your blood sugar was 90, and it was really 140. And it will catch back up eventually, you know, but it wasn't, it wasn't great, and the g4 got better. And by the time the G five came up, like I said I was making decisions off the G five. And now the G six is it's stunningly good. And yeah, and I'm about to have them back on next month for them to talk about the stuff they're going to announce over in Germany in October, and there's going to be more to talk about more, this stuff's gonna get smaller, it's going to get more accurate the wear time is going to extend this back then for me to go from G four to G six. That's 10 years of innovation back then. And now we're talking about what is it two years maybe three? Dino to map to make that leap? It's It's fantastic. And look what it did for you. It drugged you into the you saw such incredible things. You're like, I can't ignore this anymore. I have to go do this.

Unknown Speaker 51:58
Right. Why?

Scott Benner 51:59
What has the impact been? On your health? Do you think? What's the first thing you think of when I say you've got to CGM now, you're using the Dexcom you're using it on the pod? Like what's what's been the greatest benefit for you so far?

Laurie 52:13
I think I think you know, it's a toss up, it's a toss up, because mentally I feel not only do I feel feel more normal, but I also have so much less anxiety about leaving my house. I mean, I do leave my house, of course, I'm you know, I work I mean, I'm never home, I'm very, very active. But there was always anxiety around it. So if I knew I was going out, I would eat candy or eat not candy all the time. But you know, like cookies or something, or and forget about the amount of candy I have, I had my candy and my backup candy. And then like, I think you had said something to Ryan, like your mother was Willy Wonka. Because every crevice of every place, just in case, I always had candy. And so that in that respect, psychologically, I'm, I feel healthier, because I'm able to go out navigate my path and not worry so much. Um, and as far as physically, you know, the, the, you know, the fact that I'm healthier. I think it's just the, you know, the fact that I don't have the as much as high lows and as high highs. And I'm able to kind of be in the more normal range most of the time, like I think it was, I think I was it was 88%. Last time I went to the doctor exactly, which I was I was like flying, flying high. And her comment was that not that I was in range so much my my eight one C was 6.2 which I I was just like over the moon and I went in there. Thank you. I was so excited. And she was not excited

Scott Benner 53:55
too low, right?

Laurie 53:57
She said too low. And she said in order to get that low, I must have had a lot of clothes to compensate for the highs. And I said no, but I have the CGM. So I don't and I said what I said and by the way, here's my cell phone and I turned it sideways and showed her my line for the day that was pretty much a straight line with a few little bumps. You know what happened to be an extra good day because of course we know that some days are not like that. But I turned it sideways and I don't think she knew what she was looking at. And she was like, oh, okay, very like I went in there thinking I was going to get like a marching band. And I came out feeling so disappointed in her reaction happens

Scott Benner 54:37
to a lot of people or I get a lot of private correspondence from people who are like I listen to the podcast, I figured out what you were saying, put it into practice real excited, went to the endo. They yelled at me because they thought exactly what you just said. And and all that goes to show is that the advice you're getting from those people is based on the idea that they don't believe you can do what we're all doing. And and that's dangerous because they're advising you sometimes based on a fear that you don't really have anymore. You know, because you're just because let me ask you and I really don't know, are you employing the things that we talked about in the podcast? you bump and nudge? Do you? You know, are you a little aggressive when you need to be like that kind of, um,

Laurie 55:22
I struggle with the being aggressive. I, I very much struggle with that. Because as much as I am, you know, I call myself bionic, because between my CGM and my Omnipod, and my Apple Watch, and, you know, I've got it all. I feel a little bionic, I still have 40 years of baggage. And the baggage is, when I'm low, that feeling is just I mean, it's just something you don't want to ever experience. And even though I know, I see where my numbers are going, it's not going to keep going. I'm not going to like, you know, just pass out. I mean, I could, but I'm not. Because I you know, I can shut everything down and eat candy. I still suffer from that panic feeling of not knowing where I am, and Hello, I am and Hello, I'm going to keep going.

Scott Benner 56:09
So I so fast that it overwhelms you. And yeah, by yourself, I

Laurie 56:13
understand. Yeah, so being I'm, Ryan's always telling me you got to be bold. You got to be bold. And I'm like, I know. It's like we don't get it.

Scott Benner 56:22
You think you think that the day you were diagnosed, Ryan was your worst day, it's turned into my worst day.

Laurie 56:28
I know, now I really got to take care of it.

Unknown Speaker 56:31
Watch the other rescue

Laurie 56:33
now. And now I'm shared with the you know, with my family and everybody's looking at this. I'm like, this is like so not me, you know. So it's a it's just a whole different whole different world for me, but I still I do still I do struggle with that baggage of my path. Yeah.

Scott Benner 56:50
I imagine it'll get easier as time goes on. I really do. I mean, and but at the same time, you're doing it right. I mean, you're even a one C and the six is in the low six is spectacular, right? You eat Really? You eat normally, right? You're not. Um,

Laurie 57:05
I eat normally for me, you know, I'm just I like to eat. You know, I like low carb, because that's just what I you know, I want to stay thin. I eat? Yeah, I normally for me, I mean, maybe somebody else would say, you know, how come you're not eating bagels, and you know this and that. But it's for me, this is normal, the way I'm eating? I'm not denying myself anything. It's just how I choose to eat

Scott Benner 57:29
exact. Can I ask you a question? I meant, yes, or SSL or I want to go back a little bit. Brian's diagnosed, and and you guys sort of formed this relationship around diabetes now? Is that a mothering instinct? Do you think like, as much as your instinct told you not to make your kids feel like they were need to look out for you? And do you think that being more available to Ryan and talking more about your diabetes? Is that just feeling like your responsibility as a mom?

Laurie 58:00
Um, I think it's just very natural, because, um, you know, Ryan and and my other boys, you know, Greg, and Doug, also were, you know, very, very close. I talked to them pretty much Well, the boys are one of them still lives home, I talk to them every day. And I talked to Ryan, pretty much every day if not texting and back and forth. So I'm very connected to them. And And specifically, you know, speaking about speaking about Ryan, you know, we definitely have something much more in common now than we did before. And the mothering instinct does come out. But I think I also am approaching the relationship about diabetes with him from the perspective of, he knows what he has to do. He knows how to do it, he's better at it than I am. And, you know, if I see a low or a high and we're shared on this, you know, the shared situation, I might remind him what's going on, but I'm not going to point my finger like they did to me all those years, because I know that he knows what to do and how to do it with me. I got all the fingers pointed to me and I didn't know what to do.

Scott Benner 59:09
You're not doing that again to somebody else, right?

Laurie 59:11
No, no,

Scott Benner 59:12
no, it's funny how our minds react when we go through something bad. We either become you know, the polar opposite of it or we embrace it right, your parents, your parents or screamers, you either end up being a screamer, you never talk above a whisper, like that sort of a thing. And so it's it's great that it that that had enough of an impact on you that you realize like this is not the way to treat people. Now, and I'm even sorry to hear that you went back with your grade one C and sort of got pushed back because that must have been very reminiscent of when you were younger and must have felt pretty.

Unknown Speaker 59:43
Oh boy, I

Laurie 59:44
would imagine. I mean, I think she wasn't it wasn't that it was not I didn't really look at it as like negative. I looked at it as nonchalant, just nonchalant. And then and then to add in, you know, add insult to injury when I got the report in the mail because you know, I you Talk to her when I got it, but then they send the hardcopy, and everything was like, perfect, perfect. And at the bottom, she wrote her comment was, everything looks fine. Like, everything's fine. I you if you would have heard me screaming at the mailbox

Scott Benner 1:00:21
for years of getting this six, and this is everything is fine. That's it.

Laurie 1:00:25
I mean, yeah and I, I did I came in the house and I was showed my husband I was screaming, I was like, Can you believe this? And of course, you know, he being as supportive as always said, What do you care what she says, you know that it's amazing. We all know, it's amazing. We know how hard you work. Why do you care what she says? I said, because I just can't believe that she has the nerve to write doing this. Everything looks fine. I'm like, I'm better than fine. I really wanted to just go back and say, Do you know how much work this took? When

Scott Benner 1:00:55
you When? When you told her look? No, I have a nice stable line. I'm not too high. I'm not too Did you tell her how you work? You didn't say to her? I listened to a podcast right like that?

Unknown Speaker 1:01:04
I did.

Unknown Speaker 1:01:05
Did you really? Oh, God.

Laurie 1:01:06
I did. I did. I told her I mean, you you you are like and I don't even know where to begin to tell you how much your podcast has. I'm gonna now I'm gonna cry. Your podcast has absolutely changed my life. I don't I mean, words could not begin to tell you. Because every time I listen to one, and it's interesting, I see you have one about a baby and a mother and a husband and a wife and a caretaker and, you know, a dancer and I look at it. I'm saying that that's not really me. Like there's nothing, that there's nothing in there that I could really you know, I'm sure it's an interesting story. But what I realized is that every story has something I learned from. So that's amazing. And I don't there are not enough hours in the day for me to listen to all the podcasts. So I take walks I have a new puppy, I take walks with the puppy, I got those ear, bud, I you know, whatever the things I'm telling you. I'm bionic, I have the Apple Watch. I now I'm getting the brand new phone that's, you know, the whatever. I mean, I am so hooked up. But every one of them is there for me to listen to a podcast.

Scott Benner 1:02:16
So I sorry, it's costing you so much. I know. I tell people, it's free apparently cost a couple thousand dollars. Yeah, yeah.

Laurie 1:02:24
And I've had my you know, my boys listen to the podcast, and my husband listens to parts of it. And it's just I, I don't know what to say.

Scott Benner 1:02:32
Well, you didn't I wasn't setting you up to say something. I

Unknown Speaker 1:02:35
said, No, no, no, I

Scott Benner 1:02:36
but I very much appreciate that. And I have to tell you that as time goes on, I'm much better taking that compliment that I was at the beginning, that if you go back 50 episodes, I would have said something stupid after someone said that. But I genuinely appreciate that. That's how it is struck you. And that's how it's helping you. And it is totally my goal. And so it's really fulfilling to see that it's having that effect. And, and I'm just pleased that you found it. I really am. If nothing else, I'm just very happy for you. Yep. We are coming up on an hour. But I don't want to rush you off. I want people to understand that. Laurie was really very nervous to do this that I have. It's funny how it happens. Most of your scheduled recordings happen, they go off without a hitch. But I must have had to push Laurie off like 73 times at this point. And to the point where this morning I overslept through our recording, and and I could not have possibly felt worse and got ahold of her. And I said, Look, we're doing it in the evening, which I never do. And and I just wanted to I want you all to know that when you hear this this week, it was just recorded six days prior. And I'm putting it out very quickly ahead of others that I've recorded in the past because I don't want Laurie to feel nervous every day for months and months and months until this episode comes out. So we're we're getting there, right? Oh, she's getting special treatment because I because I slept through her podcast recording.

Laurie 1:03:59
I appreciate that. Because anyone that knows any one of us in my family, we can't can't wait for anything. So you did Perfect, perfect. Well,

Scott Benner 1:04:07
your son and your son is terrific, by the way. Like I really enjoyed talking to him. Like, he just he really just he amazed me like along the way, even to the point where I realized I was interviewing him. He was sitting in an airport, and I was interviewing him and I didn't even I didn't even know that. Yeah, well, he travels

Laurie 1:04:24
a lot for his business, right? He does. And, you know, nothing ever seems to knock him down. And when his diagnosis came, he was had a scheduled trip to I don't know if it was his first trip or second, I think it was the second trip to India. And there he is lying on the table with a 600 blood sugar not really knowing you know what to do about anything. And he said, all you have saying was I got to be on a plane to India in a couple of days. You know, they better get this thing figured out for me because, you know, I got to get on a plane. And I thought to myself, you know, that made me feel so good because if it were Me, I'd be thinking of how many ways I could get out of doing that until I got myself together. And he couldn't. He was like, you know, they just want to help me figure this thing out, because I'm going to India. And that, you know, that just tells me about his resilience, which I wasn't surprised about.

Scott Benner 1:05:16
Well, you have to I mean, you said, Listen, you, I'm spoken to you for an hour. Now, you don't seem in any way. Like you're like you're downtrodden from having diabetes. For all these years, you don't feel beat up, you don't say things that make me think that you are feeling sorry for yourself or suffering some sort of, you know, a depression about it or anything like that. And you made a decision just to, like you just said to yourself, I'm going to be as normal as I can be with this. And you did it. I mean, over decades with no technology, no support from doctors. I don't imagine your parents were very involved, right. And then so really, I wouldn't, I wouldn't expect anything less from from a child that you raised. And I have to tell you that what you did in the beginning, though, I think you did it in a different way than I did is very similar still in tone. You know, when we we said, I'm sorry, my wife has asked me if they want me to bring me anything from dinner. Sorry. Hold on a second. Okay, good to say No, I'm good. Thanks. Anyway, we set you know, we set about I said, my wife and I agreed early on, like, we we need to treat this like, it's common. Like, it's just it's not, not who she is, forget all that just like this doesn't really exist. It's, it is what it is it takes what it takes. And then once it gets what it needs, it's gone. right and right. And we and that is that way. And it's why I'm proud of some of the things we talked about on the podcasts, because once you figure them out, they really don't require that much upkeep. And you know what I mean? And that was purposeful on my part, because I didn't want to be thinking about this all the time. I don't you know, I Arden's had a pretty rough couple of days. I think she's, um, there's a spot and time before her period where she gets more insulin sensitive. And, and we're making it through those days right now. And still, it hasn't been all that, you know, it hasn't made that big of an impact on our life. And I'm talking about like, Oh, she's 60 Hang in there, you know, no, like, like lower lows that are holding on things like that. Not dropping that crazy lows, but but you know, yesterday afternoon, where I'm going to tell you story about the pride in my kid while I got you on. So yesterday, I had to go to the dentist. And I was in the dental chair for 90 minutes. Arden comes home from school, two o'clock in the afternoon. She says I'm hungry. I said okay, well, I gotta we got to get you set up here with something that I have to go over three o'clock dentist appointment. So she gets herself a bowl of Apple Jacks. And that's what she's going to eat. And I at that moment don't know that she's about to get into this span of lower blood sugars needing less insulin because it's this space and time around. Right. So I bought this and she and I, you know, she shows me the ball. I'm like, What do you think that issue is? It looks like seven units to me. I said I think you're 100% right? She gave herself the insulin. I go to the dentist's office. I'm you know, in the chair, I go she gets me prepped, he's bout ready to like, put me back. I look again, or blood sugar's 90. It's like 45 minutes afterwards. I'm like, this is exactly what I expected. And he works on me for a while. And I fall asleep, which I don't know how crazy that like, Yeah, it was. It was a treatment of an old root canal. I put my headphones in put in a podcast that I listened to and I fell asleep. And so they wake me up. I kid with diabetes. I sleep wherever I can. So so they wake me up. And the first thing I do is I pull myself together. I rinse my mouth out and I checked my phone to see what her blood sugar is. And Arden's blood sugar is low. Like it says l o w. Oh my god. Dexcom So she's by herself at home. And I text her. And I'm like, I don't even like it. There's nothing just like juice juice. Arden you know? Yeah, you know, and and so I'm I'm a little dazed. I don't know how long she's been low or anything like that. I'm like our need to drink a juice, turn off your bazel blah, blah. And she go I get a text back. I should find it for you. Right. Hold on one second. Let me let me let me come over over an hour now. No one cares. We'll keep going. Let me go back here.

Unknown Speaker 1:09:38
It says

Scott Benner 1:09:40
already had a juice and some chocolate. I could

Unknown Speaker 1:09:43
have more.

Scott Benner 1:09:44
More if you weren't texting me so much. So I said, I said hey, your blood sugar says low. How long ago did you drink the juice? And I'm like and chocolate doesn't work on low blood sugars. I need you to test your blood sugar. I tell her Right. So Lori, hold on to yourself. She tests and I'll tell you on this podcast and I say all the time, once or twice a year, Arden will have a really low blood sugar just like everybody with diabetes does. But they they really only happen once or twice a year. This this this year while I'm at the dentist's office. Oh my god meter says 38. Ah, and so I'm still sitting there. He's not done with me yet. I texted my wife. Are you home? She's like, No, I'm like, are you close? She says yes. I'm like how close she says 25 minutes I responded to her. Oh my God, that's not close. Nevermind, I go back to Arden. And I said, I need you to drink another juice to make sure your bagels off. And she goes, I don't want to drink another juice.

Unknown Speaker 1:10:41
Oh my god. And now I'm like,

Scott Benner 1:10:43
is she combative? Or did you know? So I'm like, how long did you drink the juice? She goes a few minutes ago, my blood sugar is gonna come back up. I turned my bezel off. And I'm like art and just drink another juice, please. There's no time drinking other juice. Should your blood sugar's dangerously low drink juice. And she goes, Dad, I knew I felt low. So I had a juice. And I'm feeling better now. Trust me, please. Oh, boy. So I said, Okay. Would you eat something? And there's a pause, and a pause at a pause, and she goes, I'll have Cheetos. And I said, Okay, oh, boy, it was the end of the text. It is the end of the time that we talked there. And so I waited a couple of minutes, I watched the arrow turned back up. It was diagonal download, by the way, when I first Oh,

Unknown Speaker 1:11:39
my gosh,

Scott Benner 1:11:40
so So um, I sitting in the chair, the guy's like, I can let you go in just a minute. Meanwhile, the his aide is looking over my shoulder while I'm like you're gonna die do something, right. So she's like, I think he really has to go and I'm like, I really do. And he goes, like, I can't like you can't leave like I have to finish this. And he had a company's like, just a couple more minutes. So I'm like, okay, so they're the arrow goes low diagonal down, and then suddenly, it's steady at 40. Oh, boy. And then it's 43 and 45 and 52. And then the arrow swings the other way. And I thought, okay, she's okay. Yeah, you know, she's okay. She did what she was supposed to do. None of this went the way we expect it to. And it's still she's all right, you know, and she and she handled it. So I let the dentists finish. And I got in the car and I called her and I said, Hey, you know, I'm on my way home. And she's like, whatever, I'm good. So I got home. loreena came in the door, and she's just hanging out doing her homework, just like she was when I left and her blood sugar level out and it was good. She actually treated really well. She and overtreating. She was right there. And I told her, I'm like, honey, I need you to really understand. I 100% trust you. I said, but I came into that situation, a little blind, and I was a little dazed from like being asleep. And I really didn't know how long you had been low. I didn't know if you'd address it. I said in my heart. I didn't know if you were unconscious when I started texting you. And I said, and when you said you didn't want another juice. I realized now you said that because you knew you did need it. But I didn't know if you were just being combative, because your blood sugar was really low. She goes, I was good. And I was like, okay, and that wow, that's

Laurie 1:13:24
I'm pretty impressed at the fact that she doesn't panic when she gets low. I mean, if somebody told me that I should drink another juice or eat something like wild, horses couldn't stop me because I I get so panicky, and so scared that I'll stuff my face. I'll gorge my face. I'll I'll I mean, I'll just keep eating. Um, I've gotten better with that, because now I can actually see what's happening. And I do realize that the arrow for the Dexcom takes, especially with those really low lows, takes a little while to catch up. Yeah, so I'm better. But you couldn't stop me from eating a whole box of cereal if and especially if somebody told me they thought they should. You wouldn't I mean, you know, I think right? I think Ryan once said that, you know, if he's low and he is looking for sugar, he would eat a gum drop off the bottom of somebody's shoe if he

Scott Benner 1:14:22
was really listen, I was. And this is something that I think that I'm telling the story is valuable for because like I said, first of all, this is not a daily occurrence, not a weekly occurrence, not even a monthly occurrence. This is a yearly occurrence, right, a blood sugar that low. And so, but what I was most impressed with was it she just sort of followed the steps we talked about. And one of the things I say all the time i think is what she did is what she trusted that what she knew what's going to happen was going to happen. She tried, she drank the juice. And she she is like this is going to work and look maybe you know there might have been a moment where it didn't work, but we also So, to be honest with you the seven units back to that bowl of cereal in any other, you know, time of the year, I under Bolus the little bit because I was leaving, I had no idea like, I don't track my 14 year old daughter's period. Although I guess now I should. But But, but apparently like it was just dumb luck. It was dumb timing right. But when when she handled it and she was being, you know, coherent and she told me she was eating, if I told you, I was never really upset or worried. I don't know what that says about it. About me. I think it just says that. Like I tell people all the time, like, eventually you will have so many experiences, that those experiences will inform how you feel in the future. And I would have been worried if there was a reason to write Trust me, I would have ran out the door with a dental dam in my mouth if I thought, right, right. But I watched it. And I was like, No, I can see how this is going. She's right. This is gonna go the way she said. Yes. So that kind of data and that kind of feedback from this equipment. And and it's just, I don't know, it's spectacular. Like you're really Yes. You know,

Laurie 1:16:09
yep, yep. And it's spectacular that you have a daughter that has you to model the, you know, the correct way to manage your diabetes, because, you know, I you do speak of what you're doing out loud. And I think that's, that's part of the modeling that she sees what you're doing in certain situations. So

Scott Benner 1:16:27
it's the whole plan learning. Yeah, it's just like any other parenting situation, you don't bother telling them things. Don't bother writing it down. You just you be a role model. And that's right. And they'll they pick it up.

Laurie 1:16:40
That's right. That's right. And I think that's what you're doing for all of us as well. You know, you're talking out loud of how you're both listening and what your bowl is saying. And you know, how you're managing art is modeling, modeling it for us, you know,

Scott Benner 1:16:55
everything, all of that. But now Yeah, now I will forever so thank you very much.

Unknown Speaker 1:16:59
That's very nice.

Scott Benner 1:17:01
Well, we're now way over time, so I'm gonna say goodbyes or anything. We didn't talk about that you wanted to talk. I don't want to leave anything out. Um,

Laurie 1:17:10
no, I don't I don't think so. I think we touched on touched on everything. You know? Yeah. Yep.

Scott Benner 1:17:16
I can't thank you enough. I can't apologize enough for sleeping through our time this morning. Very pleased that you were able to be flexible with me tonight. Thank you. I it means a lot. I think this was really a spectacular conversation. So I'm, I'm super excited to get it up. And I will. I won't even bother telling you what happened. You'll just open up your app. And it'll be there.

Laurie 1:17:37
I'm excited. Thank you so much. Great. Thank you. Thank you, you too. Bye, bye.

Scott Benner 1:17:43
Huge thanks to Lori for coming on and being so honest. And of course for Ryan for being back on the other episode that caused Laurie to come on this, you know, the whole thing. I don't have to tell you again. But thanks to Ryan and Lori to their entire family for being so transparent with us about their life with Type One Diabetes. Thank you all. So to Dexcom dancing for diabetes and Omni pod, please go to your app right now and click on the link in the show notes. That's where it's at in your diabetes app, or at Juicebox podcast.com. Go find out more about all of the great sponsors of the Juicebox Podcast when you support them, you support us and us is me and me as the podcast. So if you like the podcast, click on like, what else? Oh, I know what else there's one more thing. If you get the chance, go back and download a couple of old episodes just one or two a week. If you don't have the chance to listen to them right away. That's cool. Make a plan. But if you do have the chance, I think it would be amazing. I think a lot of stuff has gone by and you may have missed it. So if you liked this episode, just remember there is a ton of what you might call evergreen stories. You know, evergreen like they never go bad. Because they're not really time sensitive. You know stuff about tech from two years ago, you'll skip but you heard Laurie say it in this episode. Every week. She says something comes up on the podcast and she'll look and say oh, that's like a mom of a kid that's got nothing to do with me. And then she listens and realizes, well, this has everything to do with me. So go ahead back find it episode you haven't listened to yet and give it a try. I'll see you next week.

---

Please support the sponsors

Donate

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

#185 A Really, Really, Really Wonky Diagnosis

wonky as it gets…

Janae has type 1 diabetes... or does she?

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - google play/android - iheart radio -  or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

---

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
Hey, welcome to Episode 185 of the Juicebox Podcast. Today's episode is with Janae. Janae has, well, when Janae wrote me she had type one diabetes and when she got on the podcast, I don't I mean, I think you're just gonna have to listen. As always, the Juicebox Podcast is proudly sponsored by Dexcom, the makers of the G six continuous glucose monitor by Omni pod, the only tubeless insulin pump that you will ever need. And really, it's the only tubeless insulin pump there is. So I mean if you wanted to, but anyway, you get the point on the pod. And by dancing for diabetes, that's dancing the number four diabetes.com visit them today to see adorable children living with Type One Diabetes dancing. It's really kind of sweet and wholesome. Check it out.

Okay, so this is Janae. And as I was editing this podcast episode, and I'm gonna give you a little look behind the curtain that you may or may not want, I record them, save them back them up, make duplicates, and then I don't listen again until it's time to put them on the on the show. And so a day or two before you hear it, I sit down and listen again, I edit out like loud noises because you know, that wouldn't be fun to listen to, you know, maybe somebody like coughs. I tried to get rid of that. But I also end up listening again, almost for the first time, because the first time is the conversation. It's me going back and forth. And the second time is me actually hearing what was said, as I edited this episode, my wife, Kelly was working from home that day. I got about halfway through and I said this one's fascinating. Like on the edge of my seat. I don't know what's going to happen. And my wife says, What do you mean, you don't know what's gonna happen? You interview the person? I said, Yeah, I know. But I forget. So anyway, if you've never heard it before, there's a lot of suspense in this one. And it's just wonky. You have to hear.

Please remember that nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise. And to always consult a physician before making changes to your medical plan. You're ready for janai? very informal, I just asked you to introduce yourself. I asked you some random question that pops into my head and then we start talking. Okay, I wish it was better planned out than that. But it is not.

Janae 2:35
No, I have like a couple of topics that I want to touch on for sure.

Unknown Speaker 2:39
I could tell by your email.

Janae 2:43
We'll send that then I've had the most amazing and weird twists and turns I will tell you.

Scott Benner 2:49
So well. Listen, I'm already recording. So just introduce yourself Anyway, you want to be known. Just know I have a little bit of a head cold. If I'm talking and all of a sudden I stop. That was just so I could breathe. Go ahead, just anyway you want to be known.

Janae 3:06
I'm Janae. And I was diagnosed in early college years, my freshman year actually. And I've been solo living with Type One Diabetes. Actually, I don't know if this is a good introduction. Not good. I don't have type one diabetes. I found out

Unknown Speaker 3:26
you said that you don't have type one.

Janae 3:28
No. Do you? I don't think so. We don't know what I have.

Scott Benner 3:32
Fantastic. Things are going great. And you're saying?

Janae 3:34
Yeah, it's but that's the thing is it is going great. It's like the medicine I'm on and how like I just got the freestyle Libra. So I am doing like checks and all the like semi regular things that type one diabetics do I live does one for seven years. So I definitely have some experience. Okay, we're gonna,

Scott Benner 3:58
we're gonna, we're gonna have to slow down and start over. I can feel it. So okay. No, no, no, no, don't be sorry. I got a lot of good information here. So you're a freshman in college, which made you eat teen ish. Yeah, I was 18. Okay, off on your own, like anywhere near home or we're pretty far from home.

Janae 4:15
Oh, just a couple hours. Okay. Um, far. Yeah.

Scott Benner 4:19
You couldn't drive home on a whim, right? No. Okay. So far, not far enough away. you're diagnosed while you were at school, or while you were home on break.

Janae 4:27
I know when I was at school on Valentine's Day.

Scott Benner 4:32
Okay, let's just we'll go through that. How did that happen? Were you on a date? Were you sitting at home saying how much? Valentine's Day Well,

Janae 4:41
I've never been a fan of Valentine's Day. And I definitely am not. Now. That was the day I diagnosed. But it was I had a urinary tract infection that started like a week before and I was just drinking cranberry juice trying to get it to go away. And it seemed to go well. But then I started having these stomach pains, because the infection actually moved into like my kidneys and into my blood. I didn't know. And I had a friend Dr. me just because I was like, Oh, my stomach hurts so bad. And they're like, is so bad You can cry? And I was like, Yeah, I guess so I just wanted to tough it out. It was just weird. It didn't seem like there is a reason for those pains. So I went to the hospital, and then they checked my urine and they're like, can you come back here? And then they said, I, they actually said that they didn't know for sure. But they think that I'm type one

Scott Benner 5:39
should try it. Let me ask real quick. Did you actually have an infection also?

Janae 5:44
Yeah, I had it all through my blood and my kidneys and then into my lungs. And I was I was only hospitalized for three days. So I mean, it was a bit but it wasn't as bad as it could have been. I guess they must have hit you with a good antibiotic. Yeah, so

Scott Benner 5:59
you're now you're 18? Did parents show up? Or did you just by your by yourself with friends?

Janae 6:04
No, my mom, single parents, she came right away. Like as soon as I called her, and she spent like every night with me in the room. I like barely alone.

Unknown Speaker 6:15
Which is good and bad.

Scott Benner 6:18
So what what what made them say you had type one? Was your blood sugar elevated when they looked at your urine?

Janae 6:24
Yeah, well, they found proteins I think, which was the like, alert that they had. And then they checked my sugar. And I think I was like 300, almost 400 or something, which is obvious sign. And I don't know why they said that. They didn't know exactly. The reason I honestly lived for a very long time not really understanding my diagnosis and like not understanding why they like weren't sure. And trying to figure out like, Well, can we be sure? Like I don't know. But like I kept having to do everything, like take insulin and check my sugars and do everything a type one would do. So it was very confusing for many years.

Scott Benner 7:07
But you left the hospital in this couple of days after the infection cleared up with the understanding you had type one diabetes and you wanted a meter and all that stuff. And you were back at school? Yep.

Janae 7:18
Okay, and then my mom left me in my dorm room. Your mom? I hear you. Yeah. And I was just like, sitting in there like, Okay. still feeling horrible. But it was just the days.

Scott Benner 7:32
Yeah, so, so. Okay. And you live for seven years, like that? All through college? Your first three years? So you're 1819 2022 to 2425 years old? Is that how old you are now?

Janae 7:48
Well, I guess maybe eight years I'm cuz I just found out. Like, a month ago, two months ago, maybe like the changes in my diagnosis and stuff. So I'm about eight years. Maybe you miss math class while you're in the hospital or something? Like I went to art school. I don't really put a lot of emphasis on math.

Scott Benner 8:11
Okay, so so I, I think we're gonna end up going backwards at some points. But let's Pulp Fiction this and jump forward a little bit. Okay, do you because when you eat, you know what, I don't usually do this. But hold on a second. Yeah. When you emailed me Initially, I was diagnosed in 2013 2009. With MDI, for it was by myself as possibly type one. C peptide. Okay, so somewhere along the way, it is still defective, because I take insulin as well, but sometimes from it when you Is it possible, you just have the maybe you just have the flow for like eight years ago, it's possible now? Probably not.

Unknown Speaker 8:58
So okay. Not sure what

Scott Benner 9:00
happened recently that that now has you on here saying I don't have Type One Diabetes after thinking you had it for eight years. When Elizabeth contacted me, Elizabeth runs dancing for diabetes and said I'd like to put ads on the podcast. I said, Well, what do you want to accomplish? And she told me, she just wanted more people to know about dancing for diabetes, like Well, that's easy enough. I'll just say dancing for diabetes.com a bunch of times, and hopefully people will, you know, surf over and see what it's about.

Unknown Speaker 9:29
That's it.

Scott Benner 9:30
That's how nice she is. shouldn't ask me to sell you anything or do anything. She just said, Can you tell them dancing, the number for diabetes, and I said I can do that. Dancing for diabetes, dancing, the number for diabetes. I mean, you can take a minute right? Check it out.

Unknown Speaker 9:47
So what happened?

Janae 9:49
Well, I think it brings in the problem of getting a good doctor and getting the right knowledge and the right science behind it because the reason why I was taking insulin and like measuring my sugars and like, I remember asking my doctor after like, three or four years in like, I'm confused, like, what am I because I was not reacting to the insulin like normal like I was telling him, I actually don't need to take that much insulin as you're telling me to and he's like, oh, you're wrong, you're wrong, he's very elderly. And I was told by a few people like he should probably retire, you know. And he was very not proactive, not like in the nose like up and coming things, which is what I was really needing and interested in. So every time I'd asked him, he just kind of a blowed off. And when I told him about, like, I'm going low, when I'm taking the insulin that I'm supposed to be taking lows being like 40 to 60, which is pretty low for me. And I'm sorry, I lost track, I'm a bit add. And so he was like, I don't believe you. And he's like, let's do a C peptide test, which basically is testing the amount of insulin your body's like making and producing. And we took that test and I was making normal levels, which is like two point something. And that's the same amount as a normal human being. And we look back on my test. And when I was diagnosed, I was making point nine, so basically are like 0.9, or something like which type ones really should not be making any insulin. That's the whole point of like, why you are type one. So it was just like, astounding to him. But I still like needed some insulin because something wasn't working, right. Like either my receptors or like the insulin I was making was defective or something, because I would still have really high sugars, if that weren't healthy.

Scott Benner 11:44
So sometimes when you bolused, you drop because your body was also affecting your blood sugar. And sometimes it wasn't, is that the the thought?

Janae 11:52
Yeah, I think ultimately, I had the feeling like my body was making this as one and it was using some of it, obviously, because sometimes I would eat a doughnut even and I wouldn't even need to take any insulin. But then sometimes I would. It was weird. I wasn't really sure it was, it was kind of like I had to just guess and check all the time is pretty inconsistent. There'd be like phases, obviously, where I'd have to take way less insulin because my body's natural insulin was working more and then I

Scott Benner 12:24
felt probably felt like the longest honeymoon period ever. Well, and

Janae 12:27
that's what I kept getting told, like, I straight up remember telling someone who was older, like a adult who was diagnosed, and he had lived with type one for a really long time. And I mean, this was after it was about seven years. And I was telling him like my, like, how it's interesting or whatever. And he's like, Oh, well, you're just in the honeymoon phase. And I was just like, that's so insulting, because I feel like I've been

Unknown Speaker 12:53
going on for a while now.

Janae 12:54
Yeah, I've struggled with a lot of the struggles you know, really low lows really high highs, like I have to check all the all day long. You know what I mean? I have to inject all day long still. It was just like kind of unfolding because I'm like, okay, you're just as bad as a doctor you know, who doesn't really isn't listening to the whole thing. Yeah.

Scott Benner 13:17
In fairness, it's it mimics that idea. But if you know anything about the honeymoon, you have to say after, you know, after a reasonable amount of time that something else has to be you know, going on, right? It doesn't take that Oh, can you give me one second here my wife was texting me how much insulin for Panera Bread broccoli, cheddar soup, and mac and cheese. I'm not sure if there's 111. I'm gonna say huh. Bolus. This is complete gas. Let's assume she's gonna eat 236 they're gonna probably have bread, right? Yes, seven, eight. Let's call it 10 because 10 seems like a nice round number and say, okay, when are you starting? We'll find out how long till she starts deep because if she's going to start to eat in the next couple of minutes I'm going to overhaul is to cover for the lack of a Pre-Bolus. Let's for today's on the pod ad. I'm just gonna read from the notes that you guys have sent me. My son's a one C was eight. But now it's 6.9. After I got the on the pod, thank you for the podcast. I told our doctor that we wanted a pump. They tried to get us to take a Medtronic but I said no I heard about the Omni pod on the Juicebox Podcast. They pushed back I pushed harder. But now we have an omni pod. And we love it. I want to thank you for the podcast and listening to the show. We've had a breakthrough and we've moved to the Omni pod and the Dexcom g six. We started with an A one C of 8.1 but now my daughter's a one C is 6.8. I used to accept blood sugars from My son of over 200, but then I started listening to the podcast, I got an omni pod. And as a onesies already gone from 8.5 to 7.6. And I know it's gonna go lower. I want to share with you the last six months of my life with Type One Diabetes, I started listening to the podcast and I got my agency down to 6.4. The next time I went, it was 6.1. And I can't thank you enough for telling me about the Omni pod. I'm gonna keep going. I'm not even through the last two weeks of emails here. I'll just look again, click, just search the word on the bottom of my email. I've been living with diabetes for 15 years. And until I found that out next comment on the pod from you. I don't know what I was doing. My agency is going from, oh, this one's great. My agency is going from 8.5 down to 7.5. down to 6.7. down to 5.5. Thank you. Don't thank me thank Omni pod. Go to my omnipod.com Ford slash juice box to get a free no obligation demo of the best, most amazing tubeless insulin pump. It's thick. It's the bee's knees. Do it. My omnipod.com forward slash juice box with links in your show notes or Juicebox podcast.com half day of school day. Kelly's out with Arne.

Janae 16:17
What's fun? Is it raining or you are

Unknown Speaker 16:19
is rainy here is dreary. I know it was so nice a couple days ago. Just

Janae 16:25
came right open horrible or I am gray. Everyone's seasonally depressed.

Scott Benner 16:32
Yeah, right. Okay, so she said just now the food already came right out. And I gave her 10 years I was gonna say 10 units. So I will say I was going to say 10 units. If you get a diagonal, Up arrow

Unknown Speaker 16:52
was another unit.

Unknown Speaker 16:58
There we go.

Scott Benner 17:02
I can't believe we ever agree on anything. The same thing might be all day. Okay, sorry about that. Now, I'm fine. Okay, so you. I mean, it's crazy, like, so what did the C peptide comes back, the doctor looks at you and says, Hey, you don't have Type One Diabetes you have?

Janae 17:21
Well, he didn't say that. He just was like, Well, it's interesting, but just keep doing what you're doing. And that's what I got told for seven, eight years that I had was every time I would go back. Like, I never had any alarming things he would use definitely big on like, you need to lose weight, even though I would say really am not that overweight, and I'm pretty active. I have like a muscular build, too. So I don't really think and my current doctor now is like, no, you're fine. Let me ask you

Scott Benner 17:55
a question. Because that's what I want to ask you like, other than getting low and messing around with all this diabetes stuff, generally healthy otherwise? Yeah.

Janae 18:04
I mean, I have lots of like, I have a lower immune system, I get infections. You know, I had all the classic symptoms like frequent urination and like thirst and you know, the classic symptoms.

Scott Benner 18:18
Yeah, I'm see, because I'm just thinking, like, if he sees you, and believes in his heart, you have type one diabetes, and you're just coming in and telling him I get low a lot. Maybe he discounts you. And when you leave, he just thinks that this person just does not know how to handle their insulin, right? Maybe there's maybe there's ways for him to write you off and write you off and write you off the whole time. And if you're generally healthy to begin with, he might just be like, Oh, this is a person who comes here. I give them scripts for their, for their stuff. And you don't I mean, they go on your way. Like I it's not an excuse, thinks it sucks, but I'm trying to wonder how you made it eight years like that.

Janae 18:54
I made it a lot by my own personal motivation and research. Like you didn't really I didn't even have a diabetes education class. I didn't even know that what that was until I got a new doctor and they're like, Are you serious? He never made you do one of those.

Scott Benner 19:12
Doctor, the first doctor and endo was the first doctor just a practitioner.

Janae 19:15
No, he was who the hospital sent me to. So it was you know, someone on the roster that they just send people to and

Scott Benner 19:25
out of a mountain or something

Unknown Speaker 19:28
like that. No, but

Janae 19:31
and I like reached a point where I was like talking to my regular doctor, and she she worked from the same building. They're not really related, but she knew who he was and she was kind of like a maybe he probably shouldn't even be being a doctor anymore. And she's like, I honestly she thought my information was really curious. And she's been kind of along for the ride in a really big support on many ways. Like she's an amazing doctor and really cares and she was really promoting me to find someone else. And I tried I even mentioned something to my endocrinologist, which he probably shouldn't do, I guess because, but I didn't know where to go. And they're like, Well, I mean, you're gonna have too hard of a time finding anyone else. So and I was just like, Okay, well, your copay, please don't leave. Yeah, he's not doing anything for me. I asked him to like write letters. Because when I lived in Illinois, right after I graduated college, like a year or two after I moved to Illinois, and I was still trying to figure things out, my mom found this research document or this research article, about Modi. Yeah. So like the mid onset youth diabetes? Which I don't really know why it's called that because I don't think it's necessarily like, I don't really understand the name, and there's different types. But um,

Scott Benner 20:55
I don't completely understand the whole. Yeah, the acronym either. But listen, yeah, that's not why we're here.

Janae 21:03
I don't think the doctors even really understand what Modi is even yet. Like, it's so new and being researched.

Unknown Speaker 21:11
But yeah, like,

Scott Benner 21:12
I find this article, did you then go whoa, wait a minute. Maybe I don't have type one. Is that the first time you thought it?

Janae 21:17
Um, well, I was so curious. In the beginning, when my insulin wasn't working, and he told me I was making. I was or my insulin, was that reacting in a predictable way. And he told me, I was making my own insulin. I was like, Okay, this is weird, like, and then he was like, well, from the beginning at the hospital, they never actually said they knew 100% that you're a type one. And I was like, but what does that mean? Like he wasn't giving me any answers, or even a path to find answers. And

Scott Benner 21:45
he just was not that then what? Yeah, that wasn't the next statement ever.

Janae 21:51
He just kept saying literally every single time like, Look, just keep doing what you're doing. You know, and he was having me, I didn't even realize sugars over like 120. And like, that kind of sugar was bad until I was listening to your podcast. I was like, oh, like he was encouraging me to lower my sugars. I was living at like, anything. Above 150 is high.

Unknown Speaker 22:13
Okay. So and so at 140 you were just like, this is great. And just Yeah, well, anyway,

Janae 22:18
I didn't, I had no clue until I started listening to your podcast mirror saying the cashier who you're trying to get and I was just like, what? I feel lower 100?

Scott Benner 22:27
Well, that's probably just because you spend your whole time at 150 by just

Janae 22:32
right. My body's used to it, but it shouldn't be right.

Scott Benner 22:36
Right. That just because it's accustomed to it and you feel okay. Doesn't mean long term. It's gonna be good for you.

Janae 22:40
Yeah. Well, he never encouraged he didn't even bring up the idea that was ever even a bad thing.

Scott Benner 22:46
Yeah. Back that from your description so far. So Ah, but now you're not with him anymore, right? No. Um, and how does? How did you? I'm interested in that, though, like, at what point did you say to yourself, I'm not, I'm not putting up with this anymore. And I have to, I have to move to some somewhere else try to get a better answer.

Janae 23:05
I know. Well, see, I tried to contact those people that my mom sent the article to at one point A few years back. But that was like a long waiting list to get the test. And it's like to get a test to see if you're Modi, which I had no clue if I even was like a seven panel genetic test and really expensive. And they'll do it for free. But you have to be on this like waiting list kind of thing was like multiple years. So that kind of just fell on the wayside. I have emailed her back and forth, but nothing really happened. And then I moved back to my home, or I live in Columbus, Ohio. So I moved back to Columbus. And when I moved back a year after I moved back actually met someone and ironically, his uncle has diabetes, his aunt had diabetes, his dad has like hyperglycemia. And their family is really into like, the fundraising and the whole diabetic scene here in Columbus, which was really amazing. And we have OSU, which is the research college. And so but that's the thing, it's so hard to get into ocio. Once you're in, it's good, but I basically just went to the wrong hospital on the get go. Because if I would have went to issue if you go to the hospital for anything, and you go to OSU, then you're already in the system

Unknown Speaker 24:27
to be on a patient just like that. That's right.

Janae 24:30
And I didn't I didn't even think about that. I thought I just had stomach pains anyway, so but so basically, I had tried, I called even like, can I possibly become like a patient here? And they like got my information were like, well, I don't know. And they put me on this list, but like, I predicted I wouldn't really hear back for a really long time. And he had doctors in the family my boyfriend does. And they actually talked with me about it. They got me into appointment so I could get into the system, and then directly referred me through email to an endocrinologist at OSU and I've been working with her and within three appointments. Like my whole perception is like turned around. It's been nuts.

Unknown Speaker 25:15
It's gonna say how long ago was that? Um,

Janae 25:20
probably six months at four months.

Unknown Speaker 25:24
Do you feel better?

Janae 25:26
Yeah, it will. It's not. To be honest, I am not even taking insulin anymore. Okay, so what do you have?

Scott Benner 25:34
Let's keep going for a second with the feedback messages. Scott, thank you so much. I learned how to stop my spikes. I don't think I ever could have done it without seeing the information that the Dexcom g six was showing me thank you for introducing me to the most amazing thing that's ever happened to me. This one's just all in caps. And it says what are other people doing without Dexcom I can't even I can't even Scott, I wanted to send you an update. Since we got the Dexcom. I just wanted to say thank you and tell you that my daughter's agency has gone from 9.3 to 7.8. I still feel like we have a way to go. But this is an incredible improvement. That gives me nothing but hope. This last one is a story someone told me personally. They said that their child was diagnosed, they were following all the instructions that their doctor gave them. They didn't know what to do. They found the podcast, they got an insulin pump and on the pod, then they got a dexcom g six. This person told me that the stress they were feeling about not being able to manage their child's diabetes the way they wanted to cause them to need to start on medication for depression. But then they said they got the dexcom they got the on the pod. They listened to the podcast, and they were able to go off the medication. And their child's doing amazing now telling you guys I love getting these notes. And you'll be able to send one one day to if you just go to dexcom.com forward slash juicebox or click on the links in your show notes or Juicebox podcast.com. Scott, I've had Type One Diabetes for 34 years, I just switched to a dexcom like you said to my Awan sees going from 8.1 to 6.2.

Unknown Speaker 27:21
So what do you have

Janae 27:23
that but that's the thing. Okay, so my first appointment, we go through everything. My history and my history. Um, my mom's side of the family is very bizarre, my grandma, who I just met a couple years ago because my mom was adopted. And we never even met her until my mom was 50. And we have a good relationship and everything. But in meeting her, we found out some more medical history. And she was diagnosed with type one when she was like 10 maybe and like, three months from her diagnosis. They wanted to send her to a camp so she could like learn how to take care of herself and everything. And by the time it was time for the camp. They undiagnosed her because she wasn't showing signs anymore. And that look, that was it. She's like 70 years old and still doesn't have any

Scott Benner 28:14
baby. She just didn't that moment they diagnosed her But since then, yes, gone.

Janae 28:18
Yeah, but her sister did have type one. So it's just a very weird thing. But people supposedly with Modi have weird histories like that of people being diagnosed or diabetes going away. And like you have to almost have like certain family history that lines up. But

Scott Benner 28:38
you're still learning about all this

Janae 28:40
this right? Pull the weirdest thing is okay, so through the three appointments with my doctor, we kind of concluded like, at the second appointment, the first appointment was just kind of to get the base points, get my history, kind of get my levels and what I'm doing and then try to get me to a lower Shergill sugar level in general not to be comfortable at 150. So I worked on that. And then the second appointment and we did a whole bunch of tests. So waiting for this stuff to come back the second appointment, we had the test come back and she's like, well, you're negative for the antibodies and everything that people with type one normally have. So I've never had the antibodies and everything. I've always been negative though since the beginning. That's I think why people did not hundred percent say I had to be type one because they

Scott Benner 29:31
go back and they use the they didn't see with you.

Janae 29:34
Right, I was negative for them when normally type ones are positive. And she was like just verifying them and she's like, I don't know, I think you might be moody. And that was kind of why I got in with her because she's really big on research and like the newer things with Modi and everything. And so she's like, we're gonna go ahead and test you for Modi. In the meantime, we're gonna just take you off insulin Put you on Victoza which is a type two or weight loss medicine either or, which is very crazy and it was a really weird adjustment but basically she was saying that I was making insulin so she wanted to see if I can utilize my insulin better with Victoza like, interacts with like receptor like insulin receptors and like releases less glucose into your body and then it also tricks your mind to like crave less carbs. It's like really crazy. It's like a neurological drug, but you inject it the same way. So I have to do an injection every day. Just like infant The only one and I had to like wing on to it because it made me very sick. Just I think with the shock of not having insulin. You know what I mean? After eight years it was so crazy to like, I felt so tired. I was very nauseous. The medicine does that. But since that day, I have like literally just been taking the Victoza. Okay, so that's been working. But the really, really, really weird thing is when we she got went ahead and ordered the test to see if I was Modi only one place in the country does it only like takes the test and then they have to send it to the only other one place that actually like, does the test. And it's like, like I said the seven genetic panels or something like really intricate It was like $6,000 but with my, how much I make, like only 800 for me.

Unknown Speaker 31:36
So actually being broke. That's Yeah,

Janae 31:40
I'm like, okay, that's not that bad. 6000 is like insane. And my old doctor, that was his excuses. Like, well, I mean, it's a lot of money. I don't know, insurance doesn't cover and that's just what he would say anytime I ever was like, Well, can we just do the tough, you know, just to see and he's like, it's hard to write up. And that's what my doctor said Is it is very hard to order, like even to get it like order but she's very forceful and very, like, in the know, and I guess does that stuff all the time? But um, well, not that all the time though. She doesn't I don't think a lot of it for her. For her right people right?

Scott Benner 32:14
away. You named the episode a minute ago, it's just gonna be called the really, really, really weird thing. And then because we are a half an hour in, I cannot figure out what is going on, which is fascinating. It's it's, it's I mean, I'm just wondering, so let's stop for a second psychologically, or was it like to live with Type One Diabetes for eight years and not have it? Dancing for diabetes the show. Dancing her diabetes holds an annual benefits show featuring award winning and nationally recognized performers. They create an evening of entertainment and hope. These people are champions throughout the performing arts community as well as in the hearts of those affected by diabetes. Each year, the show grows in magnitude reaching new audience members, due to the generous and loyal support of the community and those directly involved. Dancing for diabetes continues to grow and fulfill its mission. Until a cure is found dancing for diabetes is passionately committed to the fight against diabetes, go to dancing the number for diabetes.com to get more information about the upcoming show. Alright, everybody, thank you. There are no more ads the rest of the way we're going to find out the rest of Janae story and I have a little update that she emailed me that I'm going to read to you at the end. What was it like to live with Type One Diabetes for eight years and not not have it?

Janae 33:41
I think I'm still in shock. I honestly don't even think I've really registered just last night, I got the freestyle Libra, which I've never had anything on my body because originally obviously I was emailing you because I did just a regular glucose monitor, you know, and I was emailing you mainly on that experience that I had. So I still I'm checking my sugars and stuff. So I got that and I was just like, Oh, it's gonna be so weird. I have something on my body and he was just like, you realize that your life is so different now like that's nothing

Scott Benner 34:15
it's just a strange, it's it's hard to put into perspective, honestly, you know, yeah, so when you check your blood sugar, what is it usually high or low or at to be

Janae 34:28
the Victoza has helped really, um, it helps me lower my sugar myself. Um, and basically my ranges are like 90 to 130 at the highest and it's like right after I eat.

Scott Benner 34:44
Yeah, that doesn't seem like you have diabetes.

I'm gonna have to license this sound that Scooby Doo makes when he's confused and put up all three episodes here. Because I genuinely so it obviously it's something different. And I while you were talking just a minute ago, I tried to pull up, you know, moody diabetes from the ad. Yeah, there's a lot of information here. And I'm gonna link it so people can go through it. Yeah, exactly the matter is, is that I don't understand that enough to have. If you want to talk about your favorite television show instead. I maybe I watch it too. I'm a fairly. I really like madami Oh, no, but, but but No, but seriously, like, I mean, you must be in shock still, because the one thing I don't understand is if you were using insulin, how are you not constantly low? Like Yeah, militating li low? Are you just using a very insignificant amount? Or do you think your body was in a different phase at that point?

Janae 36:09
The thing is, is I had to inject fairly frequently but I was literally only doing like one unit one to two units. I would my carb ratio was like 30 carbs per one unit. And back

Scott Benner 36:23
then if you didn't inject that one unit what would happen your blood sugar after you ate

Janae 36:26
I would go up to like two that 200 but I was also comfortable at being a little higher. So technically, I probably could have done better with like a couple units instead of one unit sometimes.

Scott Benner 36:36
So there was a time in your life where if you did not take insulin and you ate food, your blood sugar would go up over 200 and yeah, that doesn't exist anymore, but you're taking with Victoza Uh huh. Yeah, I'm gonna put an ad here because I need a second what do you think we should do the ad live together because I literally don't know what to do. I've never done that before but it's starting to make sense to me. But we'll hold tight so I'm now looking up Victoza, because why not? What type of insulin is Victoza? It's not influenced. As I'm reading the internet. Don't yell at me. Similar to insulin but not insulin. See, you are right. These medications are in the class drug called incretin mimetics which improve blood sugar control by mimicking the action of a hormone called glucagon like peptide adds a lot of information I don't mostly understand. Let's go to the more dumbed down how Victoza works page. This is not an ad for Victoza no no this is me trying to figure out what the heck is going on.

Janae 37:44
We can learn together

Scott Benner 37:45
learning so Victoza is made by somebody who's made by novo when food exits your stomach too quickly after you eat your blood sugar levels can rise out of range. When your liver makes too much sugar your blood sugars can get too high when your blood sugar so high your pancreas needs to make additional insulin to help right well that didn't help us three ways that I work Victoza works in three ways like a voert like the hormone GLP one to help control blood sugars. Victoza slows food leaving your stomach

Janae 38:16
yeah definitely does that right

Scott Benner 38:18
Victoza helps prevent your liver from making too much sugar and Victoza helps the pancreas produce more insulin when your blood sugar levels are high. Okay, that makes sense. Hold on it's not insulin it's not a weight loss product Have you lost weight?

Janae 38:33
Yeah, actually, I'm not an unhealthy amount my doctor was like are you eating but um I lost about seven pounds

Unknown Speaker 38:41
I would take that

Janae 38:43
not doing anything I know I was like Okay, I get

Scott Benner 38:45
it all right, he The most common side effects of Victoza may include nausea yeah never have that ever stomach ever queasy? Yeah, I've had all these about poopy that's not solid you have that ever.

Unknown Speaker 39:00
Oh yeah, I

Scott Benner 39:01
have IBS so vomiting decreased appetite indigestion and constant I love that. Yeah, constipation or diarrhea.

Janae 39:11
Dehydration I think that it has a lot to do with that because you get dehydrated on it as well. And when you're dehydrated, you can actually have diarrhea, which is weird. Like it's a symptom of being dehydrated I think.

Scott Benner 39:23
Okay, so now we know a little more but what I want instead of how Victoza works I want like who needs Victoza like like what we're gonna we're gonna totally use the internet to figure you out Hold on one second. I'm googling who needs Victoza

there's a frequently asked questions way like you Victoza raise your blood pressure.

Oh my gosh, this is the worst podcast ever. Hold on a second. I'm not even talking I do not use Victoza if you your family have ever had MTC where if either and in the current system condition what is Victoza?

Unknown Speaker 40:17
Hmm,

Janae 40:18
from my understanding, because my one doctor, my, what go ahead

Scott Benner 40:23
you tell me your understanding because I have zero understanding

Janae 40:26
my one doctor. Okay, so I just see this was like we're gonna put you on this Victoza thing. It's an older substance, I guess that's been around for a while. So that's why she felt it was an easy switch for me to do. She said, definitely do not take insulin on it. Even if you reach 200. The only reason why you would need to take insulin is if you're over 300. Because that can make you like go drastically low and really hard to get back up. And I've never had to take insulin on it. So that's good. But that's basically the only information I had to go off of except for like, the things I told you earlier and what you kind of read. And then I went to my regular doctor, and he's the one who's been super supportive and really interested in everything. And I was kind of like laying it all out for and I told her what I was taking, she's like, Oh, I give like a version of that to my patients for weight loss. So I think for the most part, people use it when they're type two, or when they're overweight.

Unknown Speaker 41:27
So I see

Scott Benner 41:29
for type twos, it can be used for the treatment of cardiovascular diseases. Let's see.

Unknown Speaker 41:40
Yeah,

Scott Benner 41:41
I don't understand heart problems, kidney or liver is safe for you tell your doctor. Geez, I need I need a refresher on this. Okay. Okay. So but so the the long and the short of it is is a lot better than seven pounds, which i think i think so. And you feel are you getting low blood sugars? Um, yeah,

Janae 42:05
I have had a couple but my lows were like 90 of my doctors like that's not Wow, that's

Scott Benner 42:12
but I'm hoping my blood sugar's lower than that right now.

Janae 42:15
But I don't know. I wasn't adjusted yet, though. And I definitely was giving me the shakes. I felt like I needed to, like, just eat like a couple documents.

Scott Benner 42:26
In the beginning of this, what you're so right in the beginning of this trance this, like this transition in your life, you know, like it's, you don't even know what the heck's going on yet.

Janae 42:37
Now, well, and I haven't even told you the best part. There's a better part than that. Go ahead.

Unknown Speaker 42:41
I'm listening. Yeah.

Janae 42:43
So anyone else who's listening, I need a little help. Maybe because when we took that Modi test, I came back negative. So my doctor was like, I don't know what that means. You literally have no known signs for Modi. I'm gonna have to contact some of my colleagues and maybe find someone we can send your blood to. Basically, I might be a test subject for someone out there because what I have doesn't seem to exist.

Scott Benner 43:11
You stop taking the Victoza right now what do you what happens? Do you know?

Janae 43:16
Oh, I definitely would have like higher sugars. Probably what would happen before when if I was when I was taking insulin and stuff. I mean, I still took I took Lantus and no vlog and I needed the long and long acting and the short acting, I would definitely have high sugars and stuff like that, I would no doubt about it. I need something you know, and I need to be active and I need like, the basics of all what type ones need, but I really am blessed to be able to find this medicine. You know, that takes significantly less work and time. You know, like everything that is so hard working and so stressful. You know, it's still stressful. But I will definitely admit it's not anything like what type ones have to go through anymore.

Scott Benner 44:12
So now I'm on Modi awareness calm. That's fantastic. I feel like there's nothing I could have typed into Google that wouldn't have come. What causes Modi results from a mutation or errors in a single gene? cases the mutated gene is inherited from a parent we can fake. It sounds like

Janae 44:30
I know it's 50%. It's about 50% if you have Modi, whether your kids will have it and

Scott Benner 44:38
it's different from other kinds of diabetes. Modi is unique because it is caused by mutations. This makes it different from type one type two which are caused by changes in genes and or other factors such as being above Okay, unfortunately moody is often confused with type one type two. Who gets it let's get them that. How do I find out if I have it? There's a genetic test, which we've already heard about from you, that you are now negative for and wondering, right? Good times. symptoms, many patients may have the usual sciencism. Sometimes, they may have the usual signs and symptoms of type one and type two, like high blood sugar, thirsty urination. But Modi patients do not have these symptoms. But many, many patients do not have these systems if you were your child was simply Jesus treatment, several types received, for example, many Modi's can be treated with simple changes in diet and exercise. Have you just tried going for a walk, it's what other times

Unknown Speaker 45:43
it just fixes it.

Scott Benner 45:45
There are also types that must be treated with insulin. Once a person is diagnosed with Modi, his or her doctor will help the person to get the right type of treatment. Well, yeah, and that's the that's the path you're on right now with this.

Janae 46:01
Well, there's different types of Modi.

Unknown Speaker 46:04
Are you on the same page? That's amazing. No, I'm

Janae 46:06
telepathically

Scott Benner 46:09
said are the different types of Modi's caused by media. Today, scientists have identified eight genes that can cause several unique types. Wow.

Unknown Speaker 46:17
Yeah.

Scott Benner 46:18
How are they different? Is there a cure that there's not a cure? There was a cure, you wouldn't be on the podcast, you'd be like, Modi, but they cured it. I'm wishing it. Tesla. Thanks. It's pretty common. over a half a million people united states have it, which makes it about as common as type one. I don't think that's right. But close.

Janae 46:38
I actually heard my doctor said it was like 5%, or something of all diabetics, or something have Modi I'm from my understanding, it's kind of rare.

Scott Benner 46:50
And so but you still have the same it says here, it's still still very serious. Because if you let your blood sugar get out of control, it's not good, right? different, you know, right, does what it does,

Janae 47:00
I definitely need to be taking care of myself. And being a thought I got the freestyle lever, I mean, I still need to be checking my sugars. See, the active

Scott Benner 47:07
belieber for you makes a ton of sense. Because you're not concerned that you're going to be like shooting up or shooting down and it's like testing your blood sugar, but without pricking your finger. So, right, I think it makes a lot of sense for you. Um, what should I ask us with my doctor? Nothing. All right. So I'm gonna keep I'm gonna put this link into because we're not just reading the internet on the podcast, but I think I don't know where else to go with it. Because I am. Because what you're saying, Let me tell you a secret about the podcast. People say stuff. And when they say stuff, I think, Oh, that's interesting. I wonder if blank and then I say that out loud, then they answer it. And then before you know what an hour goes by, but when you were saying it when you're talking, all I can think is, well, that doesn't make any sense. And that's not a good question to follow up. Sorry, I'm assuming it's not your fault. But but so what's the process you see of three, you've had three visits with your doctor now that you understand that this is probably your diagnosis. Yeah. But then the genetic tests come back. And you don't match Modi at all. But yet the treatments working?

Janae 48:17
Yeah, so what's this form of treatment? Because it's still not insulin or anything. It's that weird other solution that I'm injecting into my body, but for now, the next step? Because I was like, well, I really want to answer especially because I'm at the age where it's like, I don't know, in the future. I mean, I definitely want to leave the option for kids open and I need to know, you know, as much as I possibly can

Scott Benner 48:45
tell you a secret real quick. I'm, what 46 I've got two children, two dogs. If I didn't have kids, or dogs, my life would be amazing. I'm not saying they don't love kids and dogs, I'm saying that they take an incredible amount of effort and money to mean.

Unknown Speaker 49:01
And I know

Scott Benner 49:02
the income we had without children and dogs, I'd probably be a king. That's all I'm saying. You shouldn't go get children if you want them. I'm just saying there's times when they do stuff and you're like, this is what I gave up my life for. But I'm just saying I think

Janae 49:19
I can predict those thoughts going through my head.

Unknown Speaker 49:23
Be rational, I'm probably not the

Janae 49:24
most maternal figure out there. So

Scott Benner 49:29
I want you figuring out what the hell is going on with you before you do anything because

Unknown Speaker 49:33
oh, yeah,

Scott Benner 49:34
you because let me ask you a question. You're in your mid 20s. Right? You have a art degree so what is it you're doing with your art degree right now?

Janae 49:42
Um, I'm a but we're an accessories designer, though.

Scott Benner 49:46
So you already got your art degree?

Janae 49:48
Oh, yeah. Are myself quite well actually do special effects makeup on the side. So like the blood and guts and gore and weird thing for film and Music videos.

Scott Benner 50:01
My daughter, Arden is only 13 and a half. But she talks all the time about wanting to design clothes. That's really well that's what she seems cool. But we tried to buy her a sewing machine for Christmas. She could mess around. She's like, I don't know how to use a sewing machine. And I said, Well, that would be a good opportunity to learn. She's like, I don't think so.

Janae 50:22
The concept is she doesn't want to do it. I

Scott Benner 50:24
think she what she told me was she wants to she wants to be better at drawing so that she Yeah, design stuff better. That's what she said.

Janae 50:32
Yeah, people put a lot of emphasis on drawing. And a lot of cases for mining specifically, it's benefited me like in my career, but people don't necessarily need to be drilling either. But it is a great skill to have. I've always been pretty good on it.

Scott Benner 50:51
You were in Chicago, but you're not now you're in Ohio back in Ohio. Okay, yeah. And I felt like I needed a deep breath there. People may have other episodes I've had a head cold. So every once in a while I realized I'm using all the air in my body to talk and no other air is coming in because the hole of my nose appears to be

Janae 51:13
please breathe. I don't want you popping out. That'd be great. It will be very boring. Hello,

Scott Benner 51:19
I disagree. I think it would be completely compelling to hear you go Hello. Hello. nothing happening on the other

Unknown Speaker 51:26
side screaming the

Scott Benner 51:29
podcast guys dead hello

Unknown Speaker 51:33
everybody

Scott Benner 51:35
no one's listening. But But I So did you we have my God when you got the no markers for moody back. What was the next What? Did everybody just throw their hands up in the air go to lunch? Or was something said after that?

Janae 51:51
Ah, it was so frustrating to me because we have like a thing where you can email your doctor through like this app or whatever. And so I've she normally gets back pretty quickly and she did answers she's like keep do it. She asked me how my medicine was working and checked in to make sure like everything in about my levels with the Victoza because I hadn't talked to her at that point about it. Just kind of like going with the flow and pushing through the nausea and vomiting and stuff like they say to do. But I was just like, okay, so I don't know what this means. My boyfriend's like, well, you might be type two. And I'm like, this is the weirdest version of type two. And I don't mean to like discriminate or anything. But as a type one part living as a type one diabetic for so long. It was like I kind of I know, through talking through social media and stuff with other type one, like they kind of feel the same way. Sometimes, like people who have type two are kind of just frustrating because it's just not the same.

Scott Benner 52:50
And weird. These two diseases get stuck with similar names. And then people are trying to compare them there's no right or some with me. Well, I've

Janae 52:58
had people who have typed too. They're like, yeah, I have diabetes, too. And I'm like, it's not the same.

Scott Benner 53:08
At all.

Janae 53:09
Yeah. Oh my gosh, it's just so annoying. And like, you know, they get diagnosed when they're like 6070. And it's like, oh, wow, well, you got 6070 good years. are you complaining?

Unknown Speaker 53:20
I was just trying to drink some cranberry juice as a freshman in college. Thank you.

Janae 53:27
Excited to be holistic.

Scott Benner 53:28
I genuinely like not to go too far off the track. But I don't find any value in comparing anyone's struggle with anyone else's struggle like it just well. I'm gonna go to like, am I ever gonna say to you, oh, yeah, your stuffs worse than mine? Well, I think that quite seriously, like, whatever you got going on. Oh, that's pretty bad. It's your thing. You have to deal with it, you know? Yeah, like so to you. It's the worst thing in the world. And that completely makes sense to me.

Janae 53:56
Mm hmm. What I found was really encouraging was the beyond type one app I'd never heard about. I don't know if I heard about it through you or like on Instagram or something. Either way, I found that group and like, on there, I just feel like everyone it's not like a compare. Like, everyone kind of shares a story, but it's never in a comparing way. It's just like, Oh, yeah, I get it. Or like mine to just in a different way. It just feels like so relatable and not like we're allowed to share and we're allowed to vent. But it's also not just like, Whoa is me, you know, it's just like, yeah, like my sugar is super high. And it was like uncomfortable and it was super low, you know, or just something that you had to deal with.

Scott Benner 54:43
It's cool that you found that because I just I just interviewed Sarah Lucas from beyond type one yesterday. Oh, really? Yeah. Her episode will come out way before yours. But we're we were just talking about their DK awareness that they're trying to put into pediatrics and I'm on your Facebook Page looking at your makeup.

Unknown Speaker 55:01
Oh, exciting. It's

Unknown Speaker 55:03
really cool. No,

Unknown Speaker 55:04
creepy.

Unknown Speaker 55:06
There you go. Excellent. It's amazing. Thank you gotta get the Georgian I got the one go to Georgia where they filmed the walking dead. This is where you're

Janae 55:16
I know I've done them one local feature film is going to come out I think and then I'm about to work on another like independent film and I've done some music videos, the film scenes kind of like up and coming in Columbus. So we have really good tax situations where people get taxed a lot less if they come in town for business so appealing, okay,

Scott Benner 55:40
you're sick. It appears in some of these videos that you would also make a good doctor because you are willing to poker Yeah, things that look right.

Janae 55:46
Well, what's so interesting is I was totally gonna go into the medical field. And in high school, I trained to be an EMT basic, and got my phlebotomy license and wanted to be a surgeon or something. And then halfway through senior year, like I'm going to art school, just because I need to be selfish. And I know I'm weird and quirky and like want to look a certain way and not have to worry about people judging me and just want to be able to cast and be myself, you know, not just be so I don't know, appeal appeasing the patients and stuff in that way. But I do miss I do have a certain something in myself, that is always good. When I miss that

Scott Benner 56:31
moment don't know, maybe your doctors are looking at you and thing and what that eff is going on? And they just can't say it. Because it Do you feel we're so close to an hour? Do you feel like you're honest, like something like, do you think this doctor is moving you towards something?

Janae 56:47
I mean, considering that this is I've had four appointments now and I have another one already scheduled for two, three months from now. And the plan was she's going to research during those three months and hopefully have someone hopefully, that's willing to dive deeper on that she knows considering I've made this much progress and three visits, four visits compared to seven years of stagnant trying, trying, trying. And she's very motivated. And even if she doesn't know what I am, it seems like she's one of those people that needs an answer as well. She's like, she's not okay, for just being like, okay, you know,

Scott Benner 57:31
it is what it is, I have to tell you, I need you to follow up with me still. Because I mean, now that you can take the genetic tests and don't have the markers. I mean, maybe something happens, maybe people get false negatives or false positives or whatever. But I want please have to stay in touch and let me know what you find out as you go. Because, yeah, I'm never gonna sleep exactly right. I understand your story.

Janae 57:52
Me neither I fall asleep and wake up confused. Every day about life about myself, I'm like, what's going on is very injured, like weird, like eating, and knowing that I don't have to take insulin, but being like, what the heck is going on in my body, though? You know, like, how am I processing this? Like, how am I getting this point? Like, it bothers me. I'm not someone that I like need answers.

Scott Benner 58:21
I understand. Can I ask you in the last couple of minutes to try to separate two thoughts for a second, just want maybe you won't have an answer? And this is fine. But in a very, you know, it's not not exactly the case. But you sort of, you know what it's like to live with type one diabetes, and then it's gone now? And is can you put that into perspective? Like, is it life changing? Is it not as a big deal as you thought it would be? Like, where are you at? Like, as far as that means? That wasn't just said, but I'm just really genuinely interested. It's not like you woke up the next day and you were like, Oh, my God, this is amazing relief. I don't have Type One Diabetes anymore.

Janae 59:08
No, it honestly just feels kind of uneasy. And like I've there's been so many times like when I told my boyfriend this because he's been very involved. And he's fairly knowledgeable about diabetes since then his family and everything. And he's had to deal with me as a type one for a while. And he we just assumed that we were and then all of a sudden, I was like, well, she said this and blah, blah, blah. And he's just like, the day I stopped taking insulin, he's like, you don't have to take insulin anymore. Like, you look, he and like, I'll be like, Oh, my sugar is like 130. And he's like, Can you just appreciate that, like your sugar would have been 200 and you'd still have to take insulin and everything and he like, tries to encourage me and I'm still not. It's just like, Yeah, I don't know. I guess I just don't believe it like diabetes, like having type one diabetes. You don't want to put too you want to Celebrate the positive, you know, but you also you can't totally be like, woohoo, cuz nothing's ever consistent, like you learn not to be.

Scott Benner 1:00:10
Yeah. The other thing too is in eight years, it just occurs to me as you're talking like, you're part of the tribe now like, it's not me like, it's not like you don't completely understand living what you do and the downfalls of it, and the low blood sugars and all that, that goes with it. I would imagine that it's, I don't know, like, if everybody can't walk away from it, maybe it doesn't feel like you have like, like, you feel like survivor's guilt or something? I do. I mean,

Janae 1:00:38
I do. And actually, I told him, like, I just like, I feel like, kind of left out, like, I just feel like on the outside looking in to all these people that are dealing with something I'm so familiar with. But I just and I can relate, but not currently, in the same way. And I do I and you know, I was kind of excited listening to your podcast, I was like, hearing learning a lot about Dexcom and about Omnipod. And I was like, really interested in like getting those things going. And I was like, Oh, my gosh, I won't get to have anything like that. Not that that's something to be mad about. It's just like it was so it's just confusing, because I was like, I don't know, it's like an identity crisis, kind of.

Scott Benner 1:01:21
Seriously, I don't know. It feels like a good title for the episode. I'm confused. I just because you don't you're just it's almost like a like when we first decided to talk, that conversation would have been, I think interesting and, and probably complete. And now the conversations interesting, but it's, it's impossible to wrap up because you don't have enough answers. You have to wrap up the

Janae 1:01:49
crowd, like smack dab in the middle or right in the middle of Darden something,

Scott Benner 1:01:54
or you have to come back on then. That's fine.

Janae 1:01:57
Yeah. I do want to say though, that like, you know, I, I can't not say that I do feel extremely blessed and like, grateful. for, you know, what my body's capable of I will never say that, like I, you know, I don't want to rub it in or anything like that. But I'm not gonna take what I am given for granted. You know, it's almost like a second chance.

Scott Benner 1:02:23
You don't want to I don't want to give anybody the feeling like you're like, haha, sucker. I'm out of this.

Unknown Speaker 1:02:28
Yeah.

Scott Benner 1:02:30
Because you don't feel that way. And at the same, same time. I mean, I don't know enough about what is going on with you at the moment. But at the moment, it does sound better than having type one. So

Janae 1:02:42
right. Good for you. Definitely, I'll say a lot less than jack shins. And truthfully, throughout the day, it is night and day difference of like just worrying and being so attentive.

Scott Benner 1:02:53
Sure, sure. Yeah. There's there's just less opportunity. It sounds like for things to go. Yeah, emergency situation on you. Right. Which is a big part of that's a huge part of not doing not doing the worry around blood sugar's getting high if you don't do the insulin, right. I mean, listen, it's a huge, it's just

Janae 1:03:09
feeling better, you know, not having to just do a roller coaster.

Scott Benner 1:03:14
The whole time. You're talking though, I just keep thinking how you said your grandmother was your maternal grandmother was dying, right? She type one and then never lived with it after that.

Janae 1:03:22
Right. But that is actually one of the things like having three generations or something is like a sign for like a movie that you might have modius you have like three generations, I think. I don't know. There's something to that. Well, yeah. All right.

Scott Benner 1:03:38
So you gather all the information on this thing all the time, and then you come back and report the whole thing to me. But we have to make a deal right now that at the end of that next hour, we're going to have some sort of an understanding so that people can feel fulfilled, inclusion. Wow. Today, your life is wonky.

Janae 1:04:03
But, you know, I'm excited to be living.

Unknown Speaker 1:04:13
How can we find a picture of your shoes that you've designed? Why are they not there?

Janae 1:04:17
Oh, well, you could just go to Walmart or Target. Or any like warehouse club place. Yeah,

Unknown Speaker 1:04:23
no kidding.

Janae 1:04:24
I work. I work for dearfoams slippers. So we're known as the old lady slippers, but we actually do a lot more than that. Yeah, that's I do the little kids and like the novelty so like the critters. Anything with a thing on it.

Scott Benner 1:04:39
That's crazy. slippers in your house.

Janae 1:04:43
Oh, actually, yeah, but we only have sample sizes. So it's literally like seven eight for women's and like 910 for men.

Scott Benner 1:04:49
You have a lot of slippers that don't fit you in your house.

Janae 1:04:52
Oh, those don't fit me. I can't really give them to lay people up there. That's,

Scott Benner 1:04:57
that's great. That's really cool. It's very, I mean, get away from whatever I was gonna say get away from diabetes, but I don't know what Yeah, but to get away from the other thing from it, it's just neat to hear that you went to school for this very, you know, specific thing that I would think that most people are like, that's not a job. But you. Yeah, you made it into like a whole thing. That's amazing.

Janae 1:05:17
Well, my career, my path career path is interesting in itself. Hmm, I didn't really go to school. No, I went to school for illustration. So primarily drawing.

Scott Benner 1:05:28
Yeah, I know, a person who makes I think for the NHL, like every time the NHL comes out with new t shirts. The design, like a person I went to school with, sits in their house and makes them like, oh, dreams them up, and, and then adapts them to the different teams. And then they come. Yeah, that's it

Unknown Speaker 1:05:47
so interesting.

Scott Benner 1:05:48
It's just not what they expected. They'd be doing, I don't think Yeah, but

Janae 1:05:52
I don't think a lot of people I mean, you could say that for a lot of people. They went to school for one thing, or doing something else. I mean, that's why I have makeup on the side. I'm hoping to, you know, I'm, who knows where I'll be?

Scott Benner 1:06:05
I'm pretty sure if you would have told me I was gonna have a podcast when I was younger, I would have been like, I'm right. I don't think that's me. Exactly.

Janae 1:06:13
Like, I don't even know what that is exactly. even exists.

Scott Benner 1:06:16
I tried to tell somebody the other day that, um, you know, they said, Oh, you know, the podcast has been really helpful. And we'd spoke in person that kind of helped them hash out a couple of thoughts. And at the end, they were thanking me and I said, Look, you don't understand. I'm like, prior to diabetes. This wasn't me. Like you would never have looked at me Listen to me, known me and thought Scott's gonna take some of his free time to try to help people with their tight bond.

Unknown Speaker 1:06:41
Yeah, it's

Scott Benner 1:06:42
not, it's something about just the process of living with it. And our life. Just it just took me to a place where I thought I really should be doing this. And, yeah, you never know how you make those.

Janae 1:06:54
Well, you have things that have capability and stuff that a lot of people might not have to be able to verbally discuss it, you know, in a way that people are appreciated. Oh, you're very nice. And I always like to end the show with somebody complimenting me. So

Scott Benner 1:07:08
yeah. Just call it off right here. Janae I really appreciate you doing this. I genuinely don't know what it is. We did. Yeah, I think it's fascinating. And I think what's gonna happen is when this one goes up, I'm gonna hear back from a lot of people are like, Oh, my gosh, that mimics my life. And I'm maybe they'll have answers maybe for you. Yeah, you know, maybe for themselves. That's

Janae 1:07:30
what I'm hoping I'm just hoping that someone else who has something that they just don't feel right about, will figure out a way to find at least the steps towards an answer, especially if they have a doctor, you know, I don't mean to bad mouth, mouth doctor. He was great. But it's just, you know, you got to do what's right for you. And even if they say it's gonna be hard to find another doctor or something, you know. Alright, guys, do what you got to do. I

Scott Benner 1:07:55
think the after school special message of your of this last hour is that you can't give up and just have to keep pushing and advocating for yourself. Yeah, you know, so, if nothing else, I think people will take that away from it. So yeah, I'm gonna say thank you. Omnipod. Thank you. Dexcom. Thank you dancing for diabetes, good at dancing the number for diabetes.com go to my Omni pod.com forward slash juicebox. For going to dexcom.com forward slash juice box. Of course, there's links at Juicebox podcast.com. And in your show notes. And now Jenny's note. Oh, that's a Google Alert. I don't want that one. Not that I'm not filling out your form to see how I like it and J's that I've got it. Hey, Janae, I wanted to let you know that your episode is being released tomorrow. And I want to reach out to see if any updates. Hi, Scott. Awesome. This is very exciting. Thanks for the heads up. I'm now taking trulicity once a week, and using the freestyle Libra. I am very lucky. And both things seem to be going well so far. I also just found out that my doctor found another doctor that would like to do some research on me regarding my diagnosis. So this is also very exciting. I'm going to find out more in November. I hope all is well with you. Well, then I responded back and I was like, but what's your current diagnosis? And she said, it's still unknown. I'm being treated as a moody type two. So try to imagine that for a minute. Right now. It's September 2018. When I'm telling you that she just emailed me this, but Janae initially emailed me Janae initially emailed me in January of 2018. Imagine living like that all this time without a real firm diagnosis and understanding what you're doing. I mean, I'm Janae if you can hear me, I know you can't I know you're listening. I'm thrilled that you're doing better and that you're doing really well. But I'm rooting for you to have a real solid, firm answer. And I think everyone else Since listening is too so when you find out what's really happening, and you have, you know, a way to like explain it, contact me and come back on. I'd love to hear the rest of this. All right, I'm gonna get out of here but first thank you for all the recent iTunes reviews and ratings are very much appreciate those. And please, please remember if you're enjoying the podcast if you found it valuable if it's helped you in any way, please share it with someone else. It really is the way the podcast grows, and we continue to grow every day, every week, every month because of you. I don't have a budget to run, you know, ads on Facebook or, or you know, Instagram or anything like that. I don't, the show just doesn't make that kind of money. So I count on all of you to spread the word you do an amazing job. Just please keep going.

---

Please support the sponsors

Donate

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

#184 Jake Leach is Back

TypeZero, Basal IQ and what's on the Horizon...

Dexcom's SVP of R&D returns to talk about Basal IQ (T-Slim), TypeZero and what's on the horizon for people living with type 1 diabetes.  

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - google play/android - iheart radio -  or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

---

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
Hey, Hello friends. Welcome to Episode 184 of the Juicebox Podcast. Cast. Yeah, okay whenever we do it again. Hello and welcome to Episode 184 of the Juicebox Podcast On today's episode of the show, Jake Leach is returning you remember Jake from Dexcom, he came and talked a few months ago when g six came out. Jake is the Senior Vice President of Research and Development at Dexcom. Today Jake's back to talk about Basal iq and the T slim pump, the type one that boy, I gotta tell you people, I'm tired, but I'm just gonna keep going. The type zero acquisition, what they have coming up and a lot more in this briefer than you're normally used to episode of the podcast that was English. There we go.

Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, and to always consult a physician before making changes to your health care plan. This episode of the podcast is sponsored today by dancing for diabetes by Omni pod the tubeless insulin pump. And by dexcom, makers of the G six continuous glucose monitor. There'll be links mentioned during the show. Please make clicky on them. I started seeing news about the FDA clearance for for t slim and they're going to start using something they're calling Bayes like you and I started seeing people using it a little bit. I wondered. So I picked through seemed like it was a low suspend feature. And what it really made me start thinking about if I'm being honest, is I just started making me wonder about all your other partnerships, and where everything's headed. And this is still pretty early. So the first thing I wanted to ask you was, you know, what's the functionality on the T slim pump? And how does how does the dexcom data

Jake Leach 2:01
make it work? Sure, sure. Great. So the basal IQ is the first pump. That takes CGM data first commercial product takes dexcom CGM data and the insulin being delivered based on the CGM reading. So the product is called bazel. IQ. And what it does is it suspends insulin delivery, when it predicts that glucose is trending low. And it's one of the exciting things about it is it can very quickly turn insulin back on when it starts to see the change. The algorithm sees the change it wants to and in the CGM readings, it can turn the insulin back on it's not like a long period of suspension. So I think that's that's a nice feature of the product. It's the very first integration with tandem and G six. So they previously had the G five pump, which was a sensor augmented pump with T slim and now they can patients basically do a firmware upgrade to the pump to get the basal IQ functionality with G six. And so we're excited about that. Well, it was able to be went through the FDA very quickly for the review period. Because of all the things that he did. That was the I CGM standard, that g six being the only CGM out there with the integrated CGM designation by the FDA that part of that designation is all of the performance metrics for both center performance but also the connectivity. And so that is one of the things that aid is the approval of that product. So quickly, it was having that designation with GS six,

Scott Benner 3:44
and I'm not familiar with D slim, but so people have the pump now they just need a firmware upgrade to make this work. If they have it. Yeah,

Jake Leach 3:51
pretty depending on which pump they have. So tandem started, I don't even know the exact date. But last year, they started shipping, a pump that is capable of being firmware updated. So the first update it was available for it was the G five integration. So you get up to create and have G five connectivity to your pump. And now those same pumps can be updated with the basal IQ algorithm, and it will connect up to G six,

Scott Benner 4:19
that algorithm only works with the six not with the G five.

Jake Leach 4:22
Correct Yeah, that's my understanding. That's That's mine.

Scott Benner 4:26
And so there's but there's the other side of it doesn't exist, right? If my blood sugar starts to go up, it doesn't give me insulin, it's not a it's not a any kind of that kind of

Jake Leach 4:37
not not commercially, not yet. But there's they are working on a product that is called control IQ that has the type zero algorithm embedded in it. So the news recently Dexcom Dexcom acquired type zero the company is a Spent out of the University of Virginia, that was developing closed loop algorithm technology as well as technology for decision support with an area of diabetes. So we acquired that company recently, and are excited to work with tandem on implementation of the control IQ algorithm, generation one and then future generations as well.

Scott Benner 5:24
Is that type zero acquisition? Is there anything there you can really discuss I, I saw that come through. And I thought, well, there's got to be a great reason for that. And I just don't know if it's obvious to the rest of us yet.

Jake Leach 5:37
Yeah, there's a couple. There's a couple of things about about the acquisition that really made it makes sense, we've had a long history working with type zero, through all of their clinical trials, both the the work that was done in Virginia, as well as type zero itself. So we've been the sensory that they've used for all of that work, our different generations. So we worked really closely with the team. It's a very talented team, in both algorithm development and implementation, and also clinical work in area of closed loop. So we want to we wanted to that team to be part of the Dexcom team. So that was one aspect of it. The other aspect of it was the technology that they had developed, the control IQ algorithm is a very good insulin only algorithm that we're very interested in continuing to evolve that algorithm and making it available to our pump partners. And so tandems the first pump partner to be working with that, that algorithm. And we hope that others we know with many of our partners have their own algorithms, which we support that as well. This is another potential offering, that they could take advantage of. One of the things that Dexcom wanting to try and do is enable our pump partners with as much technology as we can, and to provide the integrated products. And this is just this is another option. We also have now a team that's closely tied to the University of Virginia, they can do, you know, we can influence work that's done there. And we're really excited about some of the future. Both of them work on the AP algorithm. So fine tuning, the first generation making a second generation third generation that continues to enhance what the algorithm can do, which is main main thing there's keep keep folks within their target glucose range. So we've got lots of exciting aspects to work on there. And then also our decision support strategy. And the different work we plan to do there, the types, your team will be assisting us with that as well.

Scott Benner 7:46
So is that in any way? Maybe you can say is that in any way an indication that you guys are getting into the insulin pump business? Or are you getting into the licensing of your algorithm to insulin pump company's business? Hey, the episode shorts, I'll make the ads even shorter. Art in turn 14 years old this summer, she's been using the Omni pod since she was four years old. And we are 100% on the team. It's kind of exciting. Sometimes when I see other pumps, like Oh, they have low suspend now or something like that. But on the pods on their way, they may not have been first, but I have a good feeling they're going to be the best. So I'm willing to wait until it's their time. In the meantime, you still get tubeless waterproof, swimming, showering, don't have to take it off while you're exercising, there's a lot of good in there. Plus, when you use the bowl with insulin ideas, and the stuff we talked about here on the podcast, in low suspend is nice. But my point is this, if you're using the T slim right on, I got no problems with you. But if you want to try a tubeless insulin pump, you really have to go to my on the pod.com forward slash juice box, or click on the links in the show notes and take a chance to win a free demo pod. It's absolutely free. It has no obligation attached to it. You can try it on it, see what you think doesn't hurt to try my omnipod.com forward slash juice box. We are right or die with Omni pod. And I think if you try it, you will be too. So is that in any way? And maybe you can't say is that in any way an indication that you guys are getting into the insulin pump business? Or are you getting into the licensing of your algorithm to insulin pump company's business?

Jake Leach 9:28
Yeah, we're not we're not we're not getting an insulin pump business. We're basically acquiring pieces and toolbox and developing them ourselves of things that can enable our partners. And so we look at it like it's a way for us to continue to support those partners with the integrations. And now we we have an algorithm that they can take advantage of this day. If they desire or we still did you couldn't support folks who have their own algorithms that they're developing, we still support as well. It's just another option.

Scott Benner 10:00
So you'll work with you'll work with a company, if you have an agreement doesn't matter if they're using someone else's algorithm or yours, but yours. Is there. Yours is there.

Jake Leach 10:08
Yeah, I just want to make it available.

Scott Benner 10:10
I am so interested to see where all that goes to, because that seems like the very beginnings of something that I don't completely grasp yet. So that is, it's incredibly exciting. And you you are how, how are you involved in that, like when you got that algorithm was like you got a new toy? Like, what part of your business life did that affect the most?

Jake Leach 10:32
Yeah, it's really exciting. It's it basically adds to the r&d team. So it's a an r&d development team that's been developing algorithms, they develop the control algorithm that that tandems using and so it's it's a group that's joined the Dexcom r&d team. So they're now now part of our team. And we've got a few different remote offices throughout the United States where we do research and development work. And so we just added this new one in Charlottesville. And so we're excited to have him on the team. And we're basically working through all the different projects that we can now enable them to work on Dexcom, we have quite we have quite a platform that we can bring to that team. And we can work together now and integration of their technology into our platform,

Scott Benner 11:19
right? Is there? Is there aspects of their work that's gonna just help the G six work on it better? I mean, are you gonna Can you fold that into the sensor technology? Is there stuff there as it is that uniquely discussion between the sensor and the pump and how it makes sense on decisions?

Jake Leach 11:37
Right now, it's focused on how, what we do with the glucose information we generate from the sensors. So that's what that the team's mainly focused on. But it does go quite a bit beyond just closed loop insulin delivery. There's a lot of aspects of their team and their capabilities that we can develop, along with some of the folks here at the corporate office here in San Diego that have been working on decision support algorithms. Now. It's basically just more more folks to solve some of the things we're looking at solving, which is how do you provide more context to the data, the glucose information that you're getting, and help make some of the decisions that have to be made every day as you're dealing with the disease. So it's just a augmenting our team with more capability. So we're very excited about it.

Scott Benner 12:25
That's excellent. I'm excited. Can you remind me? What pump companies do you have partnerships with right now? I'm t slim, obviously. But there's also are you working with Omni pod too?

Jake Leach 12:36
Yeah. So the the, what I can talk about is the partnerships that are public, we also have partnerships, they're not. So the ones that are public are obviously tandem. And then we Yes, we are working with insolate on the their horizon system, which is a closed loop system that they're they're working on to work on the integration of G six into that product, working closely to support both clinical trials and the product development. And then we're also working with Lilly, Lilly has a pump that they have in development, insulin pump, that we're doing both supporting clinical trials as well as development of the commercial product. And so check, would you like to lose your job and

Scott Benner 13:18
tell me about the ones that aren't public?

Jake Leach 13:22
I'd love to tell you, but I can't. But we do have other partners that are in development as well. And it's a great integrating technology that despite our non public,

Scott Benner 13:33
it's interesting. I've heard rumblings that on the pods working on bringing more choice to the community, but I don't know what that means. So I somehow feel like you do know what that means. But maybe you do. And maybe you don't. And again, I respect you, and I'm not looking for you to to get in trouble. I was just a, it's, it was tough when I heard that. I heard that kind of out in the world. And I was like, what does that mean? Does it mean like a different pump? Does it mean a different size pump? Is it like what is it because it wasn't? It didn't feel like dash or horizon talk to me. So I was I was doing a lot of routing into it. But I don't I don't know. Maybe I'm wrong. And you know, I'm not asking you. I'm just saying it would be nice to break a story on the podcast once in a while. That's

Jake Leach 14:15
Yeah, I don't. I don't know.

Scott Benner 14:18
I can offer you a job editing a podcast. Jake, should you lose your job, but it pays he pays $45. Anyway, so Okay, so can you tell me a little more about sort of the nuts and bolts about maybe it's, I don't know how deeply it goes. But if you want to go deep and geeky, I'd love to hear about it. When the sensor reports first of all the sensors telling that pump we're going to be what 80 is that the number it cuts off at the blood sugar

Jake Leach 14:47
you know this this specific the specifics exactly how their algorithm works? either side? I mean, I've been told the details and I've gone through it, but I don't actually have it memorized. So I don't know off the top my head No, exactly. how this feature works, but I know that it's looking ahead in time. And when the glucose drops below a certain value, it will start suspending. And then as soon as it predicts it's going to go back above that value, it's turns the insulin back on. And it does that every five minutes when it gets to five minutes CGM reading, but exactly how long it's looking at the time and the threshold at which it does it. I don't. Don't recall. But that's

Scott Benner 15:25
interesting, though. So if if for some reason, let's say the CGM says hey, you know, in however amount of time from now you're going to be this blood sugar. So we think I think you have to suspend your insulin, right? I don't know here to avoid that from happening. And then five minutes later, when the next reading comes through, if somehow your blood sugars taken a leap up, you know, I don't know somebody ran around the corner, you'll boo and you got hit with a bunch of adrenaline, it just boom, turns out right back on.

Jake Leach 15:53
Yes, it does. It is one of the features where it can turn it back on rather quickly. I mean, obviously, there's some, you know, filtering guns that it doesn't turn, you know, doesn't falsely turn back on. But yeah, it's, it's, it's very quick to respond. I know, that's one of the unique aspects of the technology that when I first saw it, I was very interested in

Scott Benner 16:14
Okay, so let's maybe we can talk a little more in the abstract and and get away from the, what it does in the T slim. So when you're when you're developing for artificial pancreas. Does, does each pump company say to you, hey, we have different thresholds we think are right, or do you? Or does that not affect how your how your algorithm works? When we're talking about the type zero algorithm? Like, do you you don't, you don't have to adjust that algorithm to them, they adjust, they just take the information from it, and then do with it make the decisions that they they find to be reasonable? Is that how that goes?

Jake Leach 16:47
Yeah, exactly. So we provide the, the algorithm. And what they do is they we provide support for them to implement the algorithm on their device. So for example, on the tandem pump, the algorithm is embedded in the software of the pump. And so the type zero team worked with tandem to do that and embedded into the pump. And that's the for the control IQ product. The bazel iq product was a different algorithm that that tandem worked on. That's not part of the types here.

Scott Benner 17:22
It does that work happen all remotely? Or do you have people like in Massachusetts working with insulin as an example? Or do they all just meet virtually? Right now you can get a dexcom g six continuous glucose monitor for you or a loved one, it is incredibly simple to do you in a dexcom.com forward slash juice box and you're well on your way. A little bit later in the episode, I'm going to speak again about what Arden's a one C was on the first three months of G sex. And let me tell you that the accuracy has been spectacular for us. And it really translated to anyone say, Hey, wait a year, if you don't know the number, it's gonna shock you. It shocked me. Every time this company takes a leap forward, my daughter's health and welfare takes a leap right along with it. g six has been spectacular. g five was amazing. But you know, research and development, Jake's doing a really good job over there. Don't forget about the share and follow apps on Dexcom. They're available for Android or iPhone, your son, daughter, friend, wife, spouse, I don't know significant other, it could be anywhere, anywhere using their Dexcom. And you can see what their blood sugar is, remotely. That's how we make artists decisions for school lunches together. Because I can see your blood sugar all day, you know, dardennes blood sugars right now. 8282 was 110. We Pre-Bolus for lunch was 120 after lunch, and she had a crazy lunch. And so I just bumped a little brought it down again, chain right back to 82 dexcom.com. forward slash juice box, the links in your show notes. Thanks for listening to the podcast. Here we go more Jake Leach.

Jake Leach 19:06
We we do both. We with all of our pump partners tandem is located right here in San Diego and Southern California. So we it's a little easier because we can get right over there. But even with insolate in our other partners literally, we we do it virtually. But we also have folks flying back and forth quite often they visit us quite often our engineers fly back there. So it's it's a very integrated effort because you can imagine trying to integrate two different technologies. You need a lot of interface time between the teams. So we have teams and even governance structures set up to help manage the programs because it's, it's important to make sure everyone's on the same page when you're doing these integration. No, yeah, full virtual and lot lots on site.

Scott Benner 19:52
And so the the, the release dates that are you know, very obviously fluid that from all these companies, whatever their target Get dates are not released dates or target dates for getting their artificial pancreas stuff out into the world. That's not on you, you guys have done the work and provided the product. It's now in their hands to implement test get through the FDA and everything like that. Is that right?

Jake Leach 20:15
Yes, yeah, we we're at this point right now we support the integration. So as they determine exactly how the Bluetooth radio works with G six, or how they want to implement the algorithm, all those things, were basically in a support role, making sure that all of that is working the way it's supposed to. We also we do supplemental testing, to make sure their their systems are implemented the properly so that it's communicating the right information back and forth with the G six. And so yeah, we did there's we do have quite a bit of infrastructure internally that we've developed over time to support our number of partners. We knew early on that we wanted to support multiple insulin delivery partners and allow choice and so we built a r&d infrastructure to

Scott Benner 21:01
support that handles that that's amazing. Hey, speaking of the G sex, it's going really well for Arden, but the G sex and I can give you a great example. So when I interviewed you back when it came out, actually, you said, you said one thing that that rang true. Eventually I said is somebody going to hack this thing and figure out how to restart it. And you were like, it's the internet, someone will figure it out. And they did. incredibly popular posts on my blog. So thank you very much. But, but, but the thing about Arden is this, like people kept asking me, well, how does it work? How does it work? And my answer ended up being I don't like you can't ask me that. Now. It seems like it's great. But I won't know until I get her a one c back right. Like, are the decisions we're making for blood sugar's low or high bumping or up bumping her down? like is that place that it's telling me I'm keeping your blood sugar? Like, how accurate is that. And I want you to know that her clarity app, of course, at the moment doesn't just give you an A one c value what it thinks, but it does give you an average blood sugar that you can easily translate to an A one C. And it very closely match what our agency ended up being after three full months on G sex. That was 5.4. It was our lowest ever.

Jake Leach 22:12
Wow, congratulate

Scott Benner 22:13
No, thank you very much. Dude, it's the technology it the better it works. The easier what I do is, you know, so, you know, we just keep Arden in a real in a simple space, right? Like, we're alerted at 70 for the low. She gets alerted at 134 Hi, I get alerted at 124 Hi. And we live in a world where she we try very hard not to give her very much insulin like you know, she's sort of just like trying to keep your car in the lane and just bump it a little bit this way. bump it a little bit that way. But if you know if the G five was telling me her blood sugar was 120 when it was actually I don't know. 130 those 10 points make a difference. So even just a little ratcheting down on the accuracy. I mean, look what it did. You know I went from, I think her last couple of Awan C's were like 6158 like in that range. And now doing nothing differently. And keeping in mind by the way that she's I don't know. I don't know if there's a delicate way, but she has blossomed into womanhood Jake. So there's that extra issues to deal with five 5.4 no significant lows. Like really something I can't tell you how much I appreciate. It's amazing.

Jake Leach 23:29
Yeah, I'd love to hear stories like that. Yeah.

Scott Benner 23:33
I have the predictive alert. I don't see very often for the lows. But we don't get that low very often, but I did happen to see it last night after a long workout with softball. And then she kind of ate some Carvey stuff that I didn't get ahead of enough with a with a pre balls. And I did get I did get woken up I think around like two in the morning and it just said her blood sugar. I think what it was, I forget what it said like I forget what her blood sugar was. But it's like, you know, we think you're going to be 55 and 20 minutes. And I cut her bazel off for a little bit of time gave her a tiny bit of juice. She went right back up to like 88 and I went right back to sleep. It was it was amazing. So yeah, really cool. with with with that in mind, the idea that every time something gets better, life gets better. Is there anything on the horizon that you can tease right now? What are you guys working on? Hey guys dancing for diabetes.com Have you checked it out yet? It's dancing the number for diabetes.com It's a great organization helping children with diabetes through dance. And don't forget their 18th annual dancing for diabetes show is the November 10. If you're in the Florida area, click on that More Information link when you get to dancing for diabetes calm and find out more. They'd love to see you. Is there anything on the horizon that you can tease right now? What are you guys working on?

Jake Leach 24:57
Are you Yeah, we're well we're working on On, obviously quite a few insulin delivery integrations. And we're, yeah, we

Scott Benner 25:09
that's all you got.

Unknown Speaker 25:10
Yeah.

Jake Leach 25:13
You know what we got made an interesting time, Scott, I'm working on what we're going to talk about at the easd conference. And so I'm trying to remember what's public and what's not, like, talk about it. I know, I've actually, we've got, all I can say is we have a ton in the pipeline. That's been one of the exciting things about, you know, growing companies, the amount of investment we make in our development is continuing to grow. So we're very excited about all the things we're working on. But I can give you something more exciting in the near future. Yeah, next time we talk, let's schedule it around at some more, I can tell you some of our exciting new news. But yeah, as of right now, we're really focused on supporting g six. It's a big part of our development. We're also quite a bit of our teams working on the next generation platform, which will come after g six, this is the work with our partners at verily that that platform is going to be another leap in terms of convenience, size, comfort, and performance as well. So it's that's a that's a neck that's, you know, that's multiple years out. That's the next generation type of thing. But it is a for the r&d team. It's one of our major focuses, because it takes years to develop the technology, of course. Hey, I

Scott Benner 26:28
just a couple quick questions for from people on actually just one real quick to excuse me from people online. With that, I guess, speaking specifically about the T slim integration, there's a parent who wants to know if the follow app will ever show if the dexcom has suspended the insulin on the dexcom follow up like so the the scenario is their child is somewhere their blood sugar, you know, predicted to be low, the pumps suspended, but the parents somewhere looking at the blood sugar low not knowing if that actually happened or not.

Jake Leach 26:59
Yeah, it's it's something that we we definitely want to implement. We we are we want implement more information and follow particularly around glucose and insulin information. And we're just now to the point with our insulin partners that we're starting to get some of that real time insulin data. And so that we do want to put that into follow and give the follower that information because we recognize how important that is, you've got the glucose information, but you also don't have the other piece of the picture. So we do want to want to offer that sort of where we are where our infrastructure is capable of transferring that information to follow. So it's just about developing the connectivity with the pump partners. And the other insulin delivery partners. Okay,

Scott Benner 27:45
okay. My The second question I got was from a parent of a teen who said that they've done a bunch of research that says that teens hear lower tones easier, easier, more easily, while there's no English on that, but they hear lower tones better. And they were wondering if you might change or add some alerts that worked at a lower

Jake Leach 28:06
range. Oh, interesting. Yeah, I, I had I hadn't? I haven't seen that. But I will go look at it. We We definitely support we have a kind of the long list of alerts that are supported on the assume we're talking about the phone app. Yeah, here. And so yeah, we will definitely look into we haven't looked at that in a while in terms of changing those alert sounds. But it's a good, good suggestion. So we'll look at what's excellent.

Scott Benner 28:33
I can't thank you enough, Jake, for coming on. I don't want to take any more time. We had a little technical issue in the beginning. So we didn't get quite a half an hour like I was hoping for. But I really appreciate you doing this. And basically what I did everyone if you're listening is I saw some stuff happening online. I was like, I don't understand what's going on. I wish I knew more. And then I thought to myself, hey, I have a podcast, I can find out if I want to. So like I can just reach out and see if Jake will do this. So I really very much appreciate you coming on and doing this.

Jake Leach 29:01
And anytime guys. Explain it and

Scott Benner 29:03
I look forward to uh, to finding out what's next. Are we talking about this year still in 2018? or?

Jake Leach 29:09
Yeah, yeah, let's let's let's chat. Let's chat after the ESD conference. So that's that's, that's up another podcast for October.

Scott Benner 29:19
It sounds great. Alright, have a great day.

Jake Leach 29:21
Yeah, thanks, guys.

Scott Benner 29:23
Hey, I don't know how infrequent it is. But it's pretty rare that I record edit and post a show on the same day. But this is one today, September 11 2018. It was recorded, edited and is now free. You hope you enjoyed a little check in with Jake index calm. Hopefully there's something in there that gets you excited or something in there that helps you with what you're doing right now. I want to thank Dexcom of course on the pod and dancing for diabetes for sponsoring the Juicebox Podcast. Please go to dancing for diabetes.com my omnipod.com forward slash juicebox dexcom.com forward slash juice box. There are, of course links at Juicebox podcast.com. Or in the show notes of your podcast app. When you click on them, it does help the podcast, guys, I posted an episode between 180 and 181. That's a bonus episode. It's only like three minutes long and explains a giveaway. There's a $25, Amazon gift card for the winners. And all I'm asking you for you to do is tell me about what episodes of the podcast have been impactful to you and why. And I've been receiving some submissions, I think some people have been typing and sending in theirs. through email, there might be a little nervous to record, I don't know, but I just wanted you to hear the most recent one. So you had an idea of what people are doing and maybe give you a little motivation to do this.

Unknown Speaker 30:44
Hi, Scott. My name is Heather. I'm mom to a relatively newly diagnosed T one D we were diagnosed in May and it's September. I credit you and the blog with being the reason that my five month diagnosed type one diabetic went from over 14 a one c down to six in just four months. So thank you, I can't begin to thank you enough. I found your podcast in month two and have been trying to catch up on as many episodes as I can. The two that I found so far are particularly new in our world. Two that were I think really impactful. Kind of were Episode 151 with Nicole, who was diagnosed at 17 and didn't really start meaning that's

Scott Benner 31:30
all you have to do to enter guys just use the recorder on your cell phone, make a recording, send an email, it's all set out for you so you can understand what to do. Like I said in the bonus episodes, it's between 180 and 181. I think we're taking submissions for maybe another couple of weeks now it's over. I'm using information that everybody is sending to me to help new listeners kind of get into the podcast quickly. So your insight is incredibly invaluable. I'll see you next week.

---

Please support the sponsors

Donate

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!