Scott Benner 3/15/24 Scott Benner 3/15/24

#1153 Dia-Dyad

Riva has lupus and one of her children has type 1 diabetes. Her husband Adam joins us.

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

+ 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 friends, and welcome to episode 1153 of the Juicebox Podcast.

I'm speaking today with a married couple Raya and Adam, they have three children. One of them has type one diabetes rival also has lupus, and possibly a thyroid issue. Her mother had hypothyroidism, their child was diagnosed very early, so we're going to be talking about everything from breastfeeding to what they're doing now. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. If you'd like to help with type one diabetes research and you're a US resident, please listen up. The T one D exchange is looking for you. That's caregivers of type ones, as well as type ones themselves. All they want you to do is take a short 10 minute survey. And that's it you'll be helping with type one diabetes research, T one D exchange.org/juice. Box head over there. Now you'll be done before you know it. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com.

This episode of The Juicebox Podcast is sponsored by ever since the ever since CGM is more convenient requiring only one sensor every six months. It offers more flexibility with its easy on Easy Off smart transmitter and allows you to take a break when needed ever since cgm.com/juicebox. This episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. And find them on Facebook and Instagram touched by type one is an organization dedicated to helping people living with type one diabetes. And they have so many different programs that are doing just that. Check them out at touched by type one.org.

Riva 2:15
My name is Raya. I am a full time mother to three kids under the age of nine. The oldest is neurodivergent. Our middle is starting kindergarten. And our baby is two and he is our type one.

Scott Benner 2:36
So you're tired. It's a lot. Yeah, no kidding. Give me your oldest stage eight, eight. Kindergartens, what five.

Riva 2:47
She's nearly six. Happy birthday. And two.

Scott Benner 2:51
Okay, who else is here with us?

Adam 2:54
And I'm Adam, I'm Ravis husband, I'm the dad to all these three kids, and also lacking in sleep. I have a background in biomedical engineering. So I've really gone deep on a lot of details on the biology and the math. So that's kind of my role in this.

Scott Benner 3:19
How are we going to refer to your kids just we're keeping their names out of it, or

Riva 3:23
I'm really torn.

Scott Benner 3:27
Well, for now, why don't we just say, type one, kindergarten and neurodivergent how's that sound? Sure. All right. Well, and if you get more comfortable, we can do whatever you want. So private fair to say this is all Adams fault, right? Like you weren't after him. He came towards you does blame it on me.

Riva 3:48
Thank you. Thank you.

Scott Benner 3:49
Every time I look at my wife, and she's uncomfortable, I think Oh, I did that to her.

Riva 3:55
Thank you know how things work.

Scott Benner 3:57
I saw her she looked attractive. I started talking to her and now look what happened. Oh my gosh. All right. The either of you have any autoimmune issues. And you know what I've decided when I asked questions in there for both of you, let's just go to reiver first, so you don't have to wonder who's going to talk? Perfect.

Riva 4:17
I have, I think a non diagnosis. I have had a couple of doctors float. The idea of something called incomplete lupus.

Scott Benner 4:35
What do they say that is?

Riva 4:36
It's lupus that can't be diagnosed with a blood test. But the symptoms match.

Scott Benner 4:45
What are your symptoms? I haven't

Riva 4:47
had a flare and a little while. So hair loss, frequent UTIs frequent upper right respiratory, very tired, anemic, itchy, like rashes. And it seemed to coincide with postpartum twice.

Scott Benner 5:12
Okay. How long did you have postpartum for?

Riva 5:15
And I'm actually saying postpartum not visa vie depression

Scott Benner 5:23
just the time after birth. Correct. Okay. Okay, so then it lasted for forever when did this come up in your life? How long have you been dealing with this?

Riva 5:37
Um, I guess I started first feeling like something was amiss about a year after our first was born

Scott Benner 5:50
about seven years ago and you don't have any other autoimmune stuff, celiac thyroid?

Riva 5:58
Again, thyroid has never been able to be confirmed. That blood that's been floated to me. Yeah,

Scott Benner 6:08
right. But let me let me jump in here for a second. So a lot of your symptoms are thyroid, like not that things don't overlap ever. But what do you mean, it's not comfortable? What's your TSH been when they've tested it?

Riva 6:19
It's been normal every time every year of my life.

Scott Benner 6:23
What's the number? I don't know the number offhand. So figure out the number because TSH is an is an interesting one. The range I think is, I don't know, four to 10. They'll call normal. But any good doctor will medicate TSH over two with thyroid symptoms. So you could have a TSH of five which would be crippling your hair would fall out. You'd be tired, you wouldn't be able to get rested. You might have skin irritations, all this stuff, and literally like Synthroid and like two weeks from now you'll feel better. And the reason I bring it up, not just because I've heard it from so many people, but because this exact thing happened to my wife. She had Arden her thyroid went bonkers. We took her to an endocrinologist. They heard all of her symptoms, tested her blood, came back and said, Well, it's not your thyroid. That lab is normal. But that was exactly the problem. So, Adam, you're good with bio or if you're good with computers, pull up somebody's blood tests while we're talking and we'll take a look. But if not, Robin No kidding. Get off the phone. Call the doctor. Find out what your last TSH was if it's over like two 2.1 Tell them you want to be medicated for your thyroid. I bet you feel better in a week. My

Riva 7:45
mom has thyroid. You're gonna start screaming at me.

Scott Benner 7:48
I mean, not screaming because we're you know, we're not married, so I'm not angry at you. It's so ruining my life. But do you think non married people are listening going? What are they talking about? Just fine people. Yeah. Okay. Where do you try right? So, what does your mom have?

Riva 8:09
Like? I don't know if she has hypo or hyper. I don't. She's on Synthroid. She's

Scott Benner 8:14
Oh, she's so she's got hypothyroidism. Did they ever call it Hashimotos this episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since cgm.com/juicebox. The ever since CGM is the only long term CGM with six months of real time glucose readings giving you more convenience, confidence and flexibility. And you didn't hear me wrong. I didn't say 14 days. I said six months. So if you're tired of changing your CGM sensor every week, you're tired of it falling off or the adhesive not lasting as long as it showed or the sensor failing before the time is up. If you're tired of all that, you really owe it to yourself to try the ever since CGM. Ever since cgm.com/juicebox, I'm here to tell you that if the hassle of changing your sensors multiple times a month is just more than you want to deal with. If you're tired of things falling off and not sticking or sticking too much or having to carry around a whole bunch of extra supplies in case something does fall off. Then taking a few minutes to check out ever since cgm.com/juice box might be the right thing for you. When you use my link. You're supporting the production of the podcast and helping to keep it free and plentiful. Ever since cgm.com/juice. Box

Riva 9:45
No. And there was a great just like a breastfeeding gynecologist at Chapel Hill. Oh, okay. said Oh it says Hashimotos

Scott Benner 9:59
well It makes. I

Riva 10:01
was really excited about that. But it came back and she said, you're fine.

Scott Benner 10:07
Yeah. So breastfeeding gynecologist is going to be the name of my first sitcom that I write. I just decided everyone would tune in at least once. They'd be like, what's this about? Yeah, it was the way you said it a crack me up. But, but yeah, just get the number, or have it or have it retested or whatever I'm, Listen, I'm not a doctor, I'm an idiot. But I've talked to enough people. And I've seen it enough in my own family. Like, for instance, when my son got Hashimotos, he got his only symptom. Besides looking back, he was probably a little like, course, like his his, his temper was kind of like off like his personality. And but his hair was falling out, no one noticed because he had long hair. And he didn't notice because he thought that was just the thing that happened. He had low iron, at one point that we had to pump back up, which by the way, has never happened to him again. And rash was his big one. So if his body heated up, he would say that his skin felt itchy. Like, you know, the first couple days of summer, when you go outside, and your body's not used to the heat in the sun, and you get that flush feeling for a second. Like that would come over him. And then he'd break out in hives, waist to neck, and they would itch incredibly. And the only way he could make it stop was to like, go out like it was November when it happened. Luckily, he'd have to walk outside without his shirt on until his body, his core temperature came down, and then it would just go away. So I don't know. I don't want to get stuck on this. But let's just say if this is it, I'd like a Christmas card. That's all. But I'm not giving. I'm not giving you my address it just emailed to me. What else? Anything else? Oh, we got your mom with thyroid. Anybody else in the family? I

Riva 12:07
mean, Adam will chime in that his mom had ever thyroid removed. But there's nothing else. Like you know, we got the insert, type one in your family. There's one person. I think again, Adam can chime in, but his grandfather had what everyone believes is type two. We have been told by you know, few people floated the ideas, a great person at trial net actually. She said, You know, we didn't know. Back then. If maybe someone had type one and died before. You know, that was really discovered and may have been called Type Two diabetes

Scott Benner 12:50
still. Yeah, Adam, I like it when she tells me what you're going to say. And then says it. This is my favorite part so far. It's good for

Riva 12:58
him. Yeah, I'm

Adam 13:00
used to it. I just nod.

Scott Benner 13:03
Adams got a great story that I'll tell you now about his grandfather. Nothing bad. Nothing bad is gonna happen to say anything. You've done enough. Okay. Couldn't go after a different girl leave her alone. So the pandemic things were limited. How long have you guys been together?

Riva 13:28
almost 25 years? Oh, wow.

Scott Benner 13:29
You've been married for 25 years? Um, no, we

Riva 13:33
got married about I think 11 There's not an about there's an exact number but we don't need to 13

Adam 13:40
Oh,

Scott Benner 13:42
my God. Remember when I said my favorite thing was gonna be when rival told your stories. Now it's when she doesn't know how long you've been married. Or have you cloudy? You have like brain fog. Definitely, all the time.

Riva 13:54
I'm so tired. Like, Sawyer didn't era just set his name, but he didn't sleep like a normal baby. You know, he's getting diabetes. And now he has diabetes. So you know, I haven't been rested. For I don't know, three or four years. Three. On

Scott Benner 14:15
Saturday when you make Adam get up really early and let you sleep. And you sleep. And you sleep like 12 hours straight because you do right?

Riva 14:22
That's an eight on my on my mornings off. You

Scott Benner 14:26
wake up and feel rested? I feel better than I normally do. Okay? But rested like that. You even remember that feeling? Even

Riva 14:36
if I was physically rested? You know, there's a new mental load that has changed how I feel. Adam, do

Scott Benner 14:46
you notice it? Like I used to? I'll read you a little bit and you can tell me if you're on board. I stopped recognizing my wife's personality when she had a problem with her thyroid that nobody was dealing with. Not that Your spotlight couldn't just be lupus, but I she was just different. And no matter how many times I tried to explain it to her, she, she didn't know what I was talking about, like she just thought, you know, this is how I am. But she wasn't like, I remember her starting to take Synthroid and thinking like, wow, watch her personality came back and, and her temperament, all different kinds of things. But I was wondering if you've noticed anything like

Adam 15:23
that? I mean, it's it's been hard to disambiguate what's been the newly diagnosed type one diabetes load, and any kind of effect a thyroid disorder might have. Yeah. So I think we yeah, we both changed a lot since the diagnosis. Have I noticed the change? Yes, but not an unexpected one. And I'm sure I've changed too.

Scott Benner 15:53
So for everybody listening, not just due to, I would warn against the narrative. The Yeah, but this happened. So this is expected because this happened, like, at some point, you should try to start expecting better than that. And because I don't know if that makes sense or not, I don't know if I'm being does

Adam 16:16
we get started to experience it.

Scott Benner 16:20
Also, by the way, congratulations on being the first person to say disambiguate on the podcast ever. Wait, it was amazing. Alright, so we got your backgrounds, telling me a little bit about your son's diagnosis. What did you notice first?

Riva 16:39
I just explained this to diabetes startup yesterday, so it's fresh. So your was it seems like a very typical newborn. And we brag to everyone that he was our easiest, baby. But he was a newborn. So you go into that nadir. When we came out of the three to six month kind of newborn period. We expected things to naturally sort of start to get better, easier. And they didn't. They started to get worse. Sawyer stopped sleeping. He did not transition to solid food over time, from probably six months to a year started to cry. All the time. Change temperament, went from happy to needy sleep continued to deteriorate. We started to take them to pediatrician more for your checks. No, they would check to see oh, is he teething? All the usual things they may check for? Yeah. He's fine. He's fine. He's fine. Around 12 months, his weight started to drop. And the pediatrician said, Ah, you're still breastfeeding. You know, you got to get some nutrient dense foods into him. Maybe breastfeed a little less. Had I breastfed him less. He wouldn't have been getting any nutrients.

Scott Benner 18:19
Because he wasn't gonna eat anything else.

Riva 18:23
He would try to eat sometimes not much interest in food. And we love food. We're like, our kids love food. And we were not novice parents. Yeah, right. And Adam kept saying, I don't think he eats food. When he would eat vomiting. We found out he had food allergies, milk, soy, egg, sesame, and they continue to mount foods that he would try. He would vomit or get hives.

Scott Benner 19:05
Do you have any food allergies or either? I do have shellfish. Is it hard for you to talk about him? Like he's a problem? Does it make you like while you were describing it? It seemed difficult for you. I was wondering why

Riva 19:22
because I'm we're both still so let down by the people who were supposed to be helping us keep a baby safe. We still feel really frustrated by the lack of big checks at these equipments. Urgent Care saw him when when he went to the ER for breathing problems. So many people had eyes on him. Nobody poked his finger

Scott Benner 19:57
and that went on for like six months.

Riva 20:00
Yeah, yeah. Probably about from age, one ish. Or maybe just before one. It's around Christmas time. And he was diagnosed the following summer. So six to eight months,

Scott Benner 20:15
when he was diagnosed, what was his blood sugar? And what did they say they thought is a once he was 472.

Riva 20:21
And Adam might remember, in the high eights,

Adam 20:28
it was eat something I can't recall exactly

Scott Benner 20:32
how close to comedy think he was. I think Lowe's,

Adam 20:37
he, I had picked him up a few times in the night. And he when he was crying, or whimpering and he was live. And this was a symptom we described to a doctor and I, we thought it was TV. I think at the time, it was probably low blood sugar. Yeah. And we thought maybe, okay, he's teeth pain. And so we would give them you know, ibuprofen, which is kind of like, full of sugar, the kids version anyway. So I don't know if that got us out of any kind of, you know, traumatic medical emergency medical experiences. But that was part of the symptoms we described. And I think probably very close. Yeah.

Scott Benner 21:29
But it See, isn't that interesting? It's another example of, like, lolling yourself into acceptance. Like, I mean, honestly, if, if it hadn't happened so slowly, right? Because that's what gets you if it hadn't happened. So slowly, if you would have randomly walked into his bedroom one night picked him up, and he was limp, you would have just gone right to the ER. Right? Yeah. But because it happens. So slowly, we start to accept it. It's the wrong word. But you know, it becomes normal. And then it's the same brain function that lets us gain weight slowly. You know, I mean, it's the same thing or make bad decisions slowly. We just, we get a little used to we cross that line, and then we wait. And then we cross it again, you just keep doing that, before you know it, you can't see that we're the first line was anymore. And you feel like you're in a place you belong. And and then that frustration? Have you talked to anybody about that? Right? But like, it's been a while, it's been a little while now. Like, I don't want you to feel mad forever about this. Because this, this happens a lot. I know it sucks. But you're actually one of the lucky ones. Because you figured it out.

Riva 22:40
I mean, I will say I'm one of the more hyper vigilant humans you might ever meet. And I don't get lulled very much. But it took us we were trying to put pieces together. You know, and I also am very intuitive, and are my gut and even Adam Scott doesn't have any intuition. We kept saying to each other, you know, in passing, something's off. And things not adding up. And we're intelligent people were educated, we have great social networks. So it's not to say that we were not trying to put a puzzle together.

Scott Benner 23:29
No, no, I don't, I don't think you weren't. I just mean that. It's the you stop seeing things. I don't know, it feels like you can stop seeing things for what they are because they so slowly creep up on you. It's the um, what is the frog in the pot thing, right, you can throw a frog in a pot of boiling water, no, jump right out. But if you put it in a pot of cold water and warm it up slowly, it'll sit there and happily die like that, that. I'm just always not that that was happening to you, but it happens to people. And so I just I bring it up in these conversations. So that, you know, people might stop for a second step back except, you know, look at their lives and go, Oh, we are nowhere near where where I thought we were. But the thing you're talking about? Listen, I have that to constantly thinking about things. What is that what's happening? It's not a fun way to live. But when you have auto immune stuff in your life that's kind of unnecessary. And even that like, intersecting each other in the house or during the day and going Did you notice that this happened? What did you think of that? And then having like a four minute conversation, then continuing to move on? I've, I've lived through that moment, a few 1000 times. So I definitely know what you're talking about. I just mean, You sound angry that nobody gave him a finger stick. And I understand why and it's reasonable, but at some point, I mean, but I took garden to the doctor for weeks about things and they were like, Oh, it's this it's that it's the Hand Foot and Mouth is came back. That never happens. Like the doctor who's a friend of mine actually said, that never happens. That's weird. And then we just kept moving. I called him again, I was like, hey, you know, Arden just had a bowel movement. And I was able to with my fingers, crush it into dust. Oh, she's just dehydrated. Try this. But I mean, think of that explanation, like there were like pebbles, that if I squeezed both sides of the diaper just exploded into dust. Does that sound like just dehydration to you? Right. And so these things happen on and on and on. But in the end, no one's looking for this. And I've seen a number of years ago now. One organization was it beyond type one, one organization got it in their head that they were going to contact every pediatricians office in the country and give them literature about this. And they tried, and they got volunteers and it fell apart eventually, you would think it's such a simple thing. But it's credibly difficult to do, you know, to make the do that advocacy. So this is a great way to bring out that story. And hopefully people will share it and not go through what you went through. Because your son, you know, really could have had a very poor end, if somebody didn't figure it out. But they did. So now you're breastfeeding, a kid a baby with diabetes a year and a half old with diabetes. Is that right?

Riva 26:28
Yeah, he's two now. And I weaned him. I think in May.

Scott Benner 26:35
Okay, about four months. Yeah, yeah. So how long did you do breastfeeding with type one, four.

Riva 26:40
So he was diagnosed a couple days shy of 15 months. And he was March April. Like 26 months? I think when I read him.

Scott Benner 26:51
I was that was it hard to Bolus for? Was he? Amy, do

Riva 26:57
you need to chime in? Yeah, this this was pre agreed to?

Scott Benner 27:03
Adam, you're allowed to speak about this. And even though you have no intuition, I think you will be a reasonable person to talk on this subject.

Adam 27:11
Well, I appreciate the vote of confidence by both of you.

Riva 27:16
So

Adam 27:18
before diagnosis, or was feeding on demand. And that was the first thing we had to get our heads around to not do that anymore. So that was a tough transition, especially because, as Rob mentioned, he wasn't eating food yet. But once he started having insulin, he started eating everything. So that was a easier transition than we thought it might be. We talked a lot about transitioning him off of breastfeeding very quickly. But we decided that it would probably be really hard for him and Arriva to do that right away, especially after he's gone through this really traumatic week long hospital visit. So that was kind of the decision point to keep doing it. We revisited and since made around a lot. But Pre-Bolus thing became very key to maintaining any kind of breastfeeding regime. And so we were really glad we found the juicebox community and then that helped us with a lot of it.

Scott Benner 28:48
So the breastfeeding without a Pre-Bolus was shooting blood sugar to where

Adam 28:55
400 How quickly pretty quickly. The ask as I described arrive as we were trying to take an unknown are containing liquid or no quantity of it. And then unknown amount of carbs in the quantity. That's what we started with.

Scott Benner 29:21
We don't know what's in here. And exactly and did you always feel comfortable that he latched and and drank?

Adam 29:29
Oh yeah, he was he was a good you know, breastfeed her by that good little nursling he will always latched and Robin he were quite a you know dyad so the

Scott Benner 29:45
way we got around it. I gotta tell you, you're gonna use dyad on this podcast, you're gonna have to define it or you're gonna have trouble people are gonna be like a team.

Adam 29:57
A team just means two people on the team.

Riva 29:59
Do I just you know,

Scott Benner 30:03
I got people out there listening out go on there a dyad What the Hold on a second, they're Googling like crazy. So, so that So okay, so you, you know he's going to eat well. What's is it still difficult to make that decision the first time like we're gonna give insulin before food?

Adam 30:23
Well, we started looking at what the hospital was telling us to do. And it just wasn't adding up. For me logic wise. It's like, wait a second, you want us to wait until after he eats till his blood sugar's rocketing up, and then give insulin just didn't make any sense to me. So we started, you know, when we were like laying claim to inventing Pre-Bolus or anything, but we started getting the idea that, well, this isn't really a great idea. Bolus after eating. And then as we became more familiar with the juicebox community was like, Oh, this is kind of what, what, what makes more sense. It's like, give him some insulin before and if he happens, do more after isn't always taught them up, right? What

Scott Benner 31:22
allows you to hear what the doctor told you see what's actually happening and make the leap because I find that's where people get stuck. They see it may make sense to them. But they can't go against what they've been told.

Adam 31:40
Yes, on my end, it's delving deep into the biology of being really, really often and in that. And I guess at some point, you just got to believe that you know what you're doing. And that, while an endocrinologist knows how to manage all this, they're not in the weeds, like you're in the weeds. And you have to make decisions on the ground that they're never faced with.

Scott Benner 32:13
And private. How and how in the world. Did you allow this dollar to make this decision? Like, what did you What did you what? But But were you guys on board? Did you have a conversation about it?

Riva 32:26
I discovered juicebox when Sawyer was sleeping on me, in the NICU, the first night. I read a thread where like someone was asking for advice for their newly diagnosed baby or toddler. And everyone rushed in and said, Don't leave the hospital without a CGM. And listen to juice box. That's great. So when the I started seeing people the next morning coming into his room, and I said, I want a Dexcom today,

Scott Benner 33:01
how'd that go?

Riva 33:05
I think they thought it was really interesting that the sleep deprived person in a traumatic situation with a little baby was demanding to still breastfeed and to have a CGM. I was really empowered by reading juicebox all night. I'm glad. That's

Scott Benner 33:28
really I don't know, makes me feel. I don't I don't know how to explain it to you. We don't have a therapist here to explain to you how I feel. But thank you. You made me feel nice. I'm happy you found it. How did you find it?

Riva 33:39
I just Googled, really. And somehow, I'm not even on Facebook. But I got an account that night. Somebody said do this. Read this person? Yeah. And I know probably, I could guess I have theory of mind about how maybe that makes you feel. But it's the truth. You changed our lives. I'm

Scott Benner 34:03
glad. I'm glad I'm glad it's going better. And that you honestly that you started so soon. That's the part that makes me the happiest, because I've just heard. And I've just heard too many stories about people who get on the wrong path and takes you know, you get lulled into believing that's the right path. And then it takes years and and sometimes medical issues for people to wonder out loud. You know, maybe I should be looking at something else.

Adam 34:29
That's terrific. Good for you.

Scott Benner 34:31
You actually got them to bring you a CGM in the hospital. Now they

Riva 34:35
brought me a sample. That's cool. That's very cool. And no one knew how to place it. So they pulled somebody whose husband had when she came in. I was in the shower in the hospital room. And Adam, you know, stuck it on his arm and click and we didn't have the right phone for it. Adam found an old one image Word house, I will say from diagnosis onward like it was on for Adam and I, we just jumped into, like, let's do this. Right. Let's try to continue to make an awesome life for our family. It's not to say didn't push us down. We could pretty ground down by course.

Scott Benner 35:25
Yeah, that's pretty much to be expected. You know. And on top of that, we're not even talking about it. But me just said at the beginning, your oldest is neurodivergent. But what is that? What does that mean?

Riva 35:36
I was trying to think about how much of his story I would want to tell. Just to say multiple overlapping diagnoses. Intellect north of 99th percentile. percentile. Super awesome. High needs kid.

Scott Benner 35:54
Okay. They come with medical issues. Newly

Riva 35:58
Yes, yeah.

Scott Benner 36:02
Yeah. Okay. Well, so you were pretty tired to begin with? What makes you? What? What made you keep having children? I don't I'm not judging you. I'm just it's a I think it's kind of a reasonable question. What like, when you when you hit a struggle in the beginning, I mean, it slowed us down. I think we thought we were gonna have three kids. So

Riva 36:24
we love having a family. We wanted to build a family. And I wanted four kids. So we're stopping. It did slow us down.

Scott Benner 36:33
Do you want to just try one more time?

Riva 36:36
We are now we're unable to and we're all too old and poor now.

Scott Benner 36:40
Oh, poor don't even have enough energy to have sex? What are you talking about? Wait, how do we make the I can't do that. Nevermind.

Riva 36:51
What's your name again?

Scott Benner 36:51
Yeah, no kidding. Kelly joke sometimes. And she's like, what if we had another baby right now? It's like, I would probably die. I was. Like, I would just shut off. It's not the desire, like the thought of doing it is like kind of exciting, right? But I don't know where the energy would come from. I really don't. I mean, RT is home from college for a few months. And it's fantastic. But she's going back in like eight days. And there's part of me that's like, Oh, good. I'm having trouble keeping up with just the extra laundry. That might be a comment about her clothes. Being a clothes horse, too. I'm not sure. But but nevertheless. So you come home with a CGM. You find a phone you're running. You're seeing things so you get to be more aggressive with the breastfeeding because you can see it. That's kind of brilliant. Injections at that point. Yeah. Yeah. How long did you do MDI for a pen? Yeah,

Adam 37:51
it was two months. Not long. Well, we, they were really good about getting us the paperwork we needed, because Omnipod had just come out. He's on Omnipod. Five. But it had just come out a few months before that, and it wasn't approved for, you know, at the time, he was 15 months old. So that we had to get special permission to use it. And a few other things, but once that all came through, there was a backlog of training, and you have to do the training before you can use it. So we were kind of chomping at the bit. Even for two months. We were like we know this is gonna get way better. getting in the weeds on the epi pens come in point five. increments are not epi pens, but insulin.

Scott Benner 38:51
Yeah, units. You

Adam 38:53
probably remember Scott but the point five increment is not that accurate.

Scott Benner 39:01
And often way too much when there's smoke. Yeah.

Adam 39:04
And so we were doing the best we could. This is to parents hitting it with everything we could. Best days

Scott Benner 39:14
were 45% or what was the range we're trying for?

Adam 39:19
I mean, we're overachievers we wanted said

Scott Benner 39:25
that all you were shooting for him is 90% of what range? What was your level? What was your high in

Adam 39:30
with MDI? Yeah, I think driver got one day at 90%. And then

Scott Benner 39:41
yeah, you didn't hear me twice. She's gonna give it to you now. Go ahead, driver give it to him.

Riva 39:47
He's wondering what size ranges? Oh, so I think it's 70 to 180 70 to

Scott Benner 39:54
180. How many nights will he have to sleep on the sofa for that? What You've just done now, Adam. Yeah.

Riva 40:01
No, it's fine. Thank you for saying that. It's Okay Adam, you can you can still sleep in, you know, in

Scott Benner 40:10
the room. The room on the floor next to the bed. I don't know prop one sheet and a half a pillow. Now I'm just teasing you guys have actually, I I actually recognize your your banter from my wife and I like so. It's it's sweet. Like I don't I wonder if people hear it the way I do but I hear it is very playful and and, and loving actually. So. Yeah, yeah, you big dummy. Now. I don't believe we've shared with people you both hold a PhD in something. Is that correct? That's correct. Yeah.

Adam 40:44
She got hers first. Of course.

Scott Benner 40:49
No, I It's why I'm doing making fun of you. Because I imagine your IQs are like 150 And

Adam 40:56
that's not very nice to make honest people's intelligence. They're not smart.

Scott Benner 41:01
Oh, yeah, that's a good point. I didn't consider it but I you do make a good

Adam 41:08
we get made fun of a lot of just

Scott Benner 41:13
Yeah, is nothing this is gonna sound fairly elitist for a second, but I haven't. I've never said I have a fairly high IQ. I guess I do a good job of like, being blue collar on TV, because I am. But um, I've mentioned it in the past. Like, I was adopted by like, lovely blue collar people. I grew up very, very broken blue collar. But my, my IQ is pretty impressive. Probably not compared to yours. But I love it when I meet somebody who I think oh, I am dumb to that person. That's interesting. To real moment when you're like, oh, oh, I'm an idiot in this scenario. Like, okay, anyway, keeps me I like it. It keeps you from, you know, getting to fool yourself. Anyway, after we're done recording, we'll all compare IQs rather than when there's Oh, please, it's not much fun. First of all, there's a thing people don't want to hear about. And actually, my wife is the only person I ever met, like, personally, whose IQ is higher than mine. And I was like, Well, this is a good move. I'll get like this girl, because she can keep me in line. So, okay, so you go, do you go to a dash First you go right on the pot five. Right to five. Okay. And the what were the Basal needs at that point? You remember he

Adam 42:43
was prescribed point one? units per hour? One? Okay. When we were NDI was two units of Lantus per day, once a day.

Scott Benner 42:58
And so the pump worked for you was no trouble

Adam 43:00
is doubled our time and range instantly. Wow.

Scott Benner 43:05
Jeez, that's amazing. And you the algorithm works well for him. No, no. So how do you make it work?

Adam 43:15
So let's put a caveat on that. It works really well at night. And we sleep better for it. So huge when right there. During the day, it would pause insulin too frequently. And too long. My theory is because he was getting point one per hour. That's a rounding error to most users of the Omni pod five is my guess. And so he would just give him enough basil. And then he would rock it up when we feed them. So we run intricate Basal programs during the day now. And then flip them over to automate it at night.

Scott Benner 44:06
Good for you. You think when he gets bigger, it'll be easier. Oh, yeah. Yeah. There's part of me that thinks you're going to be able to rattle this off the top of your head but just if you can't specifically just generally like what is the Basal profile you set up for him that works during the day?

Adam 44:22
That's an easy question. It has heard we talk about it all the time and when the adjustments we make so he begins the day with what we call breakfast basil. And that is his so his regular basil rate now is probably point three or point four per hour. And he gets point nine an hour for three hours through the brackets that make sure that anything he eats doesn't send them

Scott Benner 44:55
out a ranch. Yeah. What's the time for that? What time of day is that? Three out was

Adam 45:00
530 to 830 in the morning, okay,

Scott Benner 45:04
where's the go after the point nine.

Adam 45:07
And then we stepped down to point 7.5 Over the next two hours because at that point is going to try to take a nap.

Scott Benner 45:19
Okay. But the foods still having some impact. Exactly. Okay.

Adam 45:25
So we still need to get insulin network up and feeding itself. Now

Scott Benner 45:33
do you ramp it back up for lunch?

Adam 45:35
Yeah, so we ramp it down for nap. And he gets point to an hour when he's sleeping. And then sort of at one o'clock starts, right, we start ramping it up again. And he generally wakes up between one and 130. And he'll have something to eat soon after that it doesn't wake up super starved, or like he's missed lunch or anything. But we usually try to let the Basal the head a little heavier basil soak in, and then we

Scott Benner 46:07
feel Yeah, that's amazing. You guys are doing a great job. You know, right. Thank you. Yeah. Yeah, like, I mean, it's nice to hear, but I imagine you're aware. How often do adjustments need to be made? As he's gaining weight? Time? How do you do it?

Adam 46:25
Yeah, so we usually find we have to go up his Basal rate a little, every few months. When he gets sick. We have other basil programs we run, depending whether it's a rhino virus where he needs more basil, or if it's a gastro virus, and we'll need less. So there's a kind of be adjustments you made. Yeah. And then also growth hormone. Which can really,

Scott Benner 46:54
and you're seeing things off. You're seeing that overnight, mostly. Mostly.

Adam 46:59
Okay. Sometimes we see it a nap, but mostly at night. Okay, he'll just kind of start going diagonal up not stopped for a couple hours. And we Bolus sometimes for that. It's getting really up there. But mostly we let the Omni pod take care of it.

Scott Benner 47:18
I wish I had you guys slow march. I wish I had you guys. When Arden was to see me back then with those half unit insulin pens and or syringes and juice boxes everywhere and testing while she was napping constantly and staring at her while she was napping and wondering what the hell was going on with that stupid meter and nothing else? Yeah, I wish somebody would have. I should have made this podcast sooner for myself as well. I was thinking while I was listening to you, because you're having him as crazy as it sounds. And it does sound crazy. You're having a much better time at this than I did. So.

Adam 47:55
I'm glad we think that all the time. We're very grateful for the advanced medical devices that we have. We think how much harder it would have been even a year before.

Scott Benner 48:05
Oh, no kidding. It's you. Jeez, I wish I still had that old meter. So you could say it was my all my gear was a meter and test strips. And these just needles that were everywhere. That um, we still have some by the way. Like, like, if we ever give Arden an injection like we're like, Hey, I'm not sure if your campsite bad or not. Like let's try to inject here. I'm working from needles that we bought, I mean, roughly 11 years ago that are still in a drawer where they work great, by the way. But um, yeah. So every time I pull one out, it's like a, I get into a time machine and go back to a time when I was just panicked constantly. And really exhausted. So. Okay, so Omnipod five is doing great for you overnight. You're using it in manual mode during the day. My last question about that is was there a learning curve of switching out of manual into auto and out of auto into manual?

Adam 49:07
Yeah, we tried running it in auto during the day when we first got but we would get these really big spikes when he was eating. And so we kind of decided, okay, well, we at least have to put it in manual during the day and we'll do the prescribed Basal rate. And that allowed us to make these intricate basil programs that we use now with breakfast, basil, Sig basil, and all that. So,

Scott Benner 49:38
Adam, what about when you're coming out of the daytime out of the manual? And you've been using much more basil than the algorithm expects? Do you have trouble with Lowe's coming out of manual into auto or have you figured out how to do that pretty well? Yeah,

Adam 49:53
it seems to be pretty good at it. We haven't had much trouble with that. Again, overnight. ate it kind of depends on the night of he's gonna get growth hormone.

Scott Benner 50:05
Yeah. Okay, so it's not been a probably, yeah, not

Adam 50:09
really not a persistent one. But maybe Robin wants to chime in on a little bit more on that.

Riva 50:15
But I don't really understand the question. So

Scott Benner 50:17
my thought my, what I'm seeing with some people is if they do manual during the day and then go into automation, the automation, if they come out of it with a big like, insulin on board, but number, the automation can't stop a low that's coming. So you have to kind of learn when to flip it back into auto. And I was just wondering if that was the thing. It doesn't sound like it was a problem for you.

Riva 50:40
I mean, we, we, you know, we're calculating, you know, what's the IB? What are the cops on board when we're putting them to bed. But sometimes we get it wrong often. So we're putting a sweetheart in his mouth while he's sleeping. Or, you know, we were watching it if he's gonna go low. We just, you know, treat him and keep letting Otto do its thing.

Scott Benner 51:08
Ya know, it sounds like a good plan. What am I not bringing up that I should be? Well, what do you want to know about breastfeeding? A beedis. Baby.

Adam 51:27
I mean, I could explain how we kind of got to a point of being able to

Scott Benner 51:31
Bolus well for it. Yeah, please.

Adam 51:35
So in the hospital, they told us that breast milk has two grams per card, per ounce. And so that's what we went with for a while. And trial and error. Most of the errors showed us, that wasn't the case at all. Even when you'd have what Rocco would say, an ounce a small amount, he would go up really quickly, to idle up or straight hot. And so we gradually started assuming it was more carbs per ounce. And Dr. I got better at estimating the number of ounces that she had available and that he would eat. And so we gradually got to a number of five grams per ounce, okay. And that's all really dynamic, too. We have to go with an average. There's lots of people that's just to get your breast milk analyzed for the number of carbs and in but Rive can chime in and tell you how dynamic that number actually is. So even getting tested once it's just a snapshot in time. That

Scott Benner 52:48
is, is it impacted reiver By what you eat. Or no,

Riva 52:54
I don't know that carbs specifically, are impacted by what I eat. But I can say that generally, the composition of breast milk is at Adams using the word dynamic. So where that's often used, breast milk starts out very high fat for a newborn, it'll change over time. The milk that's at the front of your breast is higher in carbs, and lower in fat. It's called the for milk. Okay. There's been milk that if the baby would keep eating, it's called Mind milk. So that's got the fat. If the baby is sick, the milk becomes fattier iron protein. Yeah. It develops antibodies that are specific to a baby's a virus a baby may have.

Scott Benner 54:00
How do it know? How does it How does it know what's I mean? That's crazy. feels it feels a little crazy, but that's amazing.

Riva 54:09
That's amazing. Yeah. There's receptors in the nipple. Adam wood. I don't know. Maybe you know more about science of it. But that when the baby's when the virus in the baby's mouth was transferred to the nipple. It changes the milk over the course of a couple of hours and days.

Scott Benner 54:31
That's insane. He actually went to a feed Sawyer, he just sent a note. So

Riva 54:35
okay, I was going to ask him to go feed him.

Scott Benner 54:39
So somebody will do it. So you're telling me that that's insane. So the virus that's in a baby? The nipple senses that changes the milk to help the baby?

Riva 54:51
Correct. It's like personalized medicine. Oh,

Scott Benner 54:56
I didn't know they could do that. Yeah, what else can new policies that I don't know about. I'm not gonna Google that guy ever. Yeah. Right, what'll happen? So that's insane. It really is. Can I ask, like a mom question? Your middle one? Do you think? Do you worry about that the, like focusing on needs that, then you run out of time, oh, if your oldest needs things and your youngest needs things, that your middle ones just kind of chugging along.

Riva 55:30
So she's our only girl, I did find out recently that siblings of kids with differences in disabilities are sometimes called Glass children, really, because for two reasons, one, prep, they may become fragile, you know, the idea that they may be not having their needs met. And then also that they report a feeling that their parents maybe looked right through them, you know, I looked past them, when they're growing up, we worry about all our kids in the sense that we want to walk with them on their journeys, and be the supports that they need. So some of them are in something called child centered play therapy. Some of them have their needs being met. In other ways. The best support we can give to her is to put her in public school and have her in front of opportunities where she can do her own thing. Nice, it's good for her, she loves it, it's a good fit with her personality to kind of be out in the world. Good.

Scott Benner 56:58
That's excellent. I think being aware of it's probably one of the best things you could do. Yeah, yeah. Because the example I always kind of fall to is even, even in families where there's no trouble data like that you can just point to easily. Sometimes you just have a kid who doesn't need as much help with their homework. And the parents give more help to the one that does, and you can later get reported back as they get older. Like, you know, nobody helped me with my homework. And they'll say like, I didn't need it. But that's not the point. That's not how it feels, you know? So sometimes it's just nice if your parents turned to you and are like, Hey, how's it going? You need help? Yeah. And there's only so many hours of the day. It's just Gosh, this amount of time just isn't enough time. Do you see a light at the end of this tunnel for you as far as time and effort goes?

Riva 57:58
Like I think Adam said, just recently, we've graduated ourselves from the quagmire to just a pickle to now. We were trying to figure out what's this season called? And, you know, Adam, the other day says, I've got it. This is the new normal. And it felt really good to think now we're just living.

Scott Benner 58:30
Yeah, just this, maybe every moments not going to be our and that you can do like you're really you guys have like a different rhythm now? I

Riva 58:41
think so. Yeah. Yeah. One of the main challenges we have now and I would say have had since diagnosis is that Sawyer is little, and babies and toddlers are annoying. It's a lot. His toddler newness is often harder to manage than his diabetes.

Scott Benner 59:11
Yeah. Oh, that's, that's kind of nice to know, don't you think? Right. Yeah. Yeah, that's that's very nice to know, actually. So the diabetes as it becomes more familiar, and your experiences build up, you start kind of knowing what to do more intuitively. It does fade into the background.

Riva 59:30
Yeah, I remember you saying that. Maybe you say it all the time. But you said on a podcast I listened to maybe one or two weeks post diagnosis. You said one day it just fades into the background. I think I really held on to that. And in the wee hours of the morning, when things were difficult and like you just said When Everything Feels like a nightmare. I just thought you know, event Really, this will be part of our lives. And we were already tuned into what I refer to as differences in disabilities, because of our oldest, we'd already become sensitive to parenting a child with the unique path. And we hope that this would sort of fall into some kind of rhythm to eventually. Yeah,

Scott Benner 1:00:27
I mean, and yours is positive rhythm to some people fall into a negative one where they just don't understand the insulin or, you know, and yeah, then that just becomes a completely different story. So your story is, it's so weird to say, because I know it doesn't feel like that probably was it's a real it's a success. You know, you have a success story here. It's wonderful. Honestly, I feel really good about it. You're too tired to feel good about it. But from the audio feel good about it. Good. Oh, that was back. That was nice. What, what did he was that?

Adam 1:01:04
Oh, I gave him iron bar. So it's got nuts and little bit of chocolate.

Scott Benner 1:01:14
Was that for a low blood sugar or just hungry? He

Adam 1:01:16
was trending down. So it just kind of, we're not in the treatment territory. It's just a good thing that I'll bump them up and be pretty even.

Scott Benner 1:01:28
This doesn't need insulin because of the situation.

Adam 1:01:30
Yeah, he's gotten kind of gastro budgie the last day or so. Okay, so we're trying to like, ramp down the basil, but I think we've got a little too much on right now. So he was just calming down more than he should have been a little heavy.

Scott Benner 1:01:47
Yeah, I've been. I'm trying a new algorithm with Arden. So I just put it on, like 24 hours ago. And I'm still doing a lot of staring, trying to, like, is this right? Do I turn this knob? Not yet? Maybe what is this happening? That'll go on for a couple of days, where we decide if we're gonna try this one for a while or not. But um, anyway, it's it's uh, it sharpens every sharpens my skills aren't like, why are we doing this? She's like, loop theory works great. I was like, I know, I'm like, let's just try this and see what happens. So you could always just now that they're just, you know, when you do DIY, it's there's just two apps on our phone, like it just shut one off and try the other one. And if you don't like it, you can just restart a pod with the old one and just go right back to what you were doing. So given Iaps a shot, and seeing how that's gone, which I can say on here, because nobody will hear this for like six months. So plenty of time to cover myself. Okay, like so let's get to the most important question. And I'll let you guys get back to your life. When you listen to the podcast. It's on two different devices. Right. So I get two downloads. It's not just one.

Riva 1:02:58
I read the transcripts.

Scott Benner 1:03:01
Oh, forget my question, then. You. Thank you for bringing that up. I never know who the hell is looking at this.

Riva 1:03:12
Mom's mom's.

Scott Benner 1:03:15
So you read the podcast.

Riva 1:03:17
I have to read it. Our kids. So our oldest is homeschooled. And saw us here. They're always with me. And we're pretty careful about what content they hear. And especially our oldest is, you know, understands everything he hears. So I read them on my phone. When I'm putting someone to bed. When I'm cooking, I have an open reading it bits and pieces.

Scott Benner 1:03:51
I'm not appropriate for your nine year old is what you're saying. I agree with you

Riva 1:03:55
listen too much. Oh,

Adam 1:03:57
I also try to make sure they don't get a huge heavy dose of diabetes. talk all the time. I

Scott Benner 1:04:05
think that's yeah, yeah, that's a good idea. I also don't think I'm appropriate for nine year olds in case any Well, that's who we were just being kind. No, oh, you're Canadian, I didn't realize

Adam 1:04:20
will apologize for that after that.

Scott Benner 1:04:23
explicitly and for hours. We're so sorry. We don't know why. But no, that's so cuz I that's the thing, right? That's like an expense for me. And, and it's time and I do it. And I'm like, is anyone looking at this? But I know I know people do. It's just so hard to imagine. Like for people who wouldn't think to do it, if that makes sense. But I'm glad it's there. That's great. They're getting better and better. I was looking into a new company recently who runs the transcript. And at the same time each transcript gets its own AI bot. And so instead of asking a question of the whole website, which AI doesn't seem to be up to steal, it is very good when you only give it a few 1000 words. So for example, Jenny and I didn't, what do we do a math of Basal insulin or ISF or something like that, where we just have like a super chatty conversation about how to set up a setting. And I've been messing with it. If you go to that AI and say, I weigh this much. And I forget what else you have to say to it like something very simple. What's my insulin sensitivity factor? Like what's a good starting place for it? It actually goes through the text and comes back and gives you an answer. Crazy. So yeah, so I have an imagination where one day you'll be able to go to the website and ask diabetes questions and get rock solid answers from out of the AI coming out of the tax. So anyway, that's all one of my long term goals that I don't tell anybody about. So anybody who's listening right now, don't bother going and looking because I didn't do it yet. But it's but it's happening. So Oh, I'm so glad you do that. Alright, so fine. So you can't just download them and delete them to help me I don't understand. Right? I don't really ask for a whole lot.

Riva 1:06:17
I can't do that.

Scott Benner 1:06:20
It's, we're on on to one of our best months ever. As we're talking. I'm looking at the countdown for the next 36 hours on Michael, I think we're gonna make it to a pretty cool number. So anyway, you guys were terrific. I really do appreciate this. Thank you so much.

Adam 1:06:36
Do you too? Yeah, no,

Scott Benner 1:06:38
no, it's my pleasure. It really is. Yeah, we're very happy to give back. And you definitely have this is a terrific conversation. So I mean, this is how the podcast grows, everybody gets done. And they'll say to me, like, we'll get on recording, and sometimes people will go, I'll understand if you don't use that. And I'm like, why? Like, I don't know what you're saying. I was like, No, how many of these do you think I've never used? Anything I've just recorded and going not that one? Not that when I'm you've pretty much heard every conversation I've ever had with people with diabetes. And, you know, everybody comes from a different perspective. And I think in the end, it ends up helping somebody so terrific. So seriously, yeah, I appreciate it. Can you hold on for a minute for me? Yeah. Great. Thank you. So

this episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. If you're looking for a great organization to support someone who's supporting people with type one diabetes, the way you would like you're looking for touch by type one touched by type one.org. Or find them on Facebook and Instagram. There are longtime sponsors of the podcast, and they're out there doing great things for people with type one diabetes. A huge thank you to ever since CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the ever sent CGM, you just replace it once every six months via a simple in office visit. Learn more and get started today at ever since cgm.com/juicebox. The diabetes variable series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about travel and exercise to hydration and even trampolines. juicebox podcast.com Go up in the menu and click on diabetes variables. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1152 It Was Always Yellow

Craig has had T1D for 50 years.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 1152 of the Juicebox Podcast.

They will be speaking with Craig who has had type one diabetes for 50 years, Craig and I are going to go through how technology has changed through his lifetime. And that story ends with him building his own Iaps system. I'm talking about 61 year old Craig building his own Do It Yourself algorithm. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan.

Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's juice box at checkout to save 40% at cozy earth.com. And if you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org/juicebox. and complete the short survey. You'll be helping type one diabetes research right there from your phone from your sofa or wherever you are. T one D exchange.org/juicebox. This episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since it's gonna let you break away from some of the CGM norms you may be accustomed to no more weekly or bi weekly hassles of sensor changes. Never again will you be able to accidentally bump your sensor off. You won't have to carry around CGM supplies and worrying about your adhesive lasting. Well that's the thing of the past ever since cgm.com/juicebox. This episode of The Juicebox Podcast is sponsored by ag one drink ag one.com/juice box. head there now to learn more about ag one. It's vegan friendly, gluten free, dairy free, non GMO, no sugar added no artificial sweeteners. And when you make your first order with my link, you're going to get a G one and a welcome kit that includes a shaker scoop and canister. You're also going to get five free travel packs and a year supply of vitamin D with that first order at drink a G one.com/juice box. This show is sponsored today by the glucagon that my daughter carries G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. My

Craig 2:48
name is Craig, I've been a tier one diabetic for over 50 years. And I'm here to basically go over what I learned recently pertaining to, you know, the the new treatments that are available for type one diabetics that before this May I never knew about, oh,

Scott Benner 3:15
this is going to be interesting. I'm going to enjoy this. Okay. Craig, if you've had diabetes for 50 years, how old are you? I am 61. Very nice. So you're 11 years old when you were diagnosed? 50 years ago 19. So

Craig 3:29
long ago, I can't remember exactly right. But I was about 11 years old to the best of my rescue recollection, I have a younger brother, who is also a T one D. And he was diagnosed several years before me in the early 70s and the early 70s. Okay, wow.

Scott Benner 3:52
Well, alright, so this the reason I'll find this interesting, and I think everybody else will, too, is because you've come up with one idea of management. And it's shifted probably four times significantly since then. But do you keep up with it? So Alright, so first, let's go back and say, Do you remember anything about your diagnosis? Yeah, I

Craig 4:18
remember it very clearly. At the time, you know, obviously, we had some experience with type one diabetes in the family because of my brother. I really didn't have any kind of insight into what what that was like, other than he had diabetes. I didn't know anything more about what this specials, you know, special conditions were surrounding it.

Scott Benner 4:44
You just basically grew up in a house where your brother has diabetes. He gets a shot twice a day, right?

Craig 4:50
Oh, back then it was I believe once a day in the morning, from what I can remember that's that's what I remember myself starting on once a day in the morning, it was it was a pretty slim treatment. Yeah. You know, I mean, I really, I don't know, there wasn't that much known. This is the way you did it. And, you know, so that's what we accepted. I didn't know. But anyway, getting back to how I discovered I had diabetes. Out of the blue, I started to get real thirsty. And I wondered to myself, that's fine. Me. And I had, I had said to my mom, who by this time was taking care of my brother for a couple of years. I said, Hey, Mom, I'm really thirsty. And I'm urinating a lot. And she said, Oh, well take one of your brother's test strips. Because back then we had the test strips that you had to use, you know, you take it out of the little vial and up on the little test strip, and then you look at the color. And I remember revealing the color as I peed on it, you know, in front of my own eyes. And it went, like, all the way up to the worst color. I forget what it was the worst colors or yellow? Yeah, pretty green was the best color and it wasn't green. So she said, really? You sure? I said, Yeah. And we left for the hospital. So it was a pretty easy diagnosis. And, you know, that's how it all that's how it all started. And you know, at that point, it really didn't even understand the impact. Sure, even when I was in the hospital, I didn't understand the impact. And you know, the education that you were given in the hospital was more like, how to take an insulin shot yourself, and not much about how to manage it. I guess they must discuss that at the time with my mom to come up with the dosage. And I'm sure she already had an idea from from doing it with my brother. So that's how it all started. Yeah,

Scott Benner 6:53
you have any other brothers and sisters?

Craig 6:57
I have two other brothers. And the interesting fact about that is my brother and myself both have brownish hair. My other two brothers that never develop diabetes have blonde hair.

Scott Benner 7:12
Well, now we know how to avoid it. Yeah, so that's just that's

Craig 7:15
just like a defining, I guess, tree between our chemistry like I must be more chemically like with my brother that has type one diabetes, and the other two are more chemically alike in a different way.

Scott Benner 7:29
I wonder if that's in any way possible? That's interesting. For sure. So you guys see that? That's the fact. Yeah. Well, not that you're not that your hair color is not the same. I just wonder if that actually has anything to do with anything? That'd be amazing. Growing up, do you guys kind of pair up a little bit because of this or does it not bond you like that?

Craig 7:51
I would say somewhat however, you know, we were kids. We grew up in a city you know, we lived on a city blocks. Obviously he was a different age group and we had different you know, different grades of school, different friends, all that kind of stuff. So I think we both kind of just tried to cope in our own way. separately. I don't think we ever got together and compared notes. I

Scott Benner 8:19
say if I'm not mistaken because of this one shot a day process. You weren't really doing much with diabetes, right. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G vo Capo pen can be administered in two simple steps even by yourself and certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use G Bo Capo pen before an emergency situation happens. Learn more about why G Bo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit G voc glucagon.com/risk For safety information. Taking care of your health isn't always easy, but it should at least be simple. That's why for the last three years I've been drinking ag one every day, no exceptions. It's just one scoop mixed in water once a day every day and it makes me feel energized and focused. That's because each serving of ag one delivers my daily dose of bye vitamins, minerals, pre and probiotics and more. It's a powerful, healthy habit that's also powerfully simple. Before I was taking ag one, I would get that brain fog in the middle of the day, and I just couldn't seem to get on top of it. But now that doesn't happen anymore. By starting my day with ag one, I found focus, and a renewed ability to perform at my highest level all day long. Drink ag one.com/juice box, when you use that link, you're supporting the production of the Juicebox Podcast. I drink age you want in the morning, but you could use it as a coffee replacement before workout or in your smoothie. If there's one product, I had to recommend to elevate your health, it's a G one. And that's why I've partnered with them for so long. So if you want to take ownership of your health, start with ag one try ag one and get a free one year supply of vitamin d3 k two and five free ag one travel packs with your first purchase exclusively at drink ag one.com/juice box. That's drink ag one.com/juice box. Check it out. No, no. Did you ever get let's say

Craig 11:06
you were staying alive Scott.

Scott Benner 11:08
Right, right. We did you ever get low? You have low blood sugars as a kid? Oh, yeah. Oh, yeah. That happened

Craig 11:16
multiple times a day. I'm a kid, you're out running around like a low blood sugar. Sure. I mean, you had to constantly eat to feed the monster so to speak. You know what I mean? It was just, it was a never ending roller coaster. And I'm sure when I wasn't low, I was probably 300. But, you know, we didn't even have any good way to monitor it. So it was it was like the wild west of diabetes. But yeah, you know, looking back people before me, obviously didn't even have a

Scott Benner 11:44
chance. No, no, no, that was that you're you really kind of come into it in one of those very first treatments that allows you to get 50 years with it. Yeah.

Craig 11:54
And I can remember the the insulin that we use was pork or beef.

Scott Benner 11:58
Yeah. Right. So it was

Craig 12:02
there wasn't that much science behind it all, you know? No, no, I

Scott Benner 12:05
take your point. I really do. What's the first shift you remember in management?

Craig 12:11
Oh, that's a long time. You know, I shifted from the one shot a day eventually to multiple shots a day, which still included the one in the morning, but then, you know, I trying to give an extra boost during mealtimes? I'm gonna say that wasn't that successful? Oh, really? I don't think I don't know, the control wasn't much better. How did you measure that? And not only that, but now I had like syringes all over the place. You know what I mean? either used or unused? Or you know what I mean? Really just overwhelmed with a mess with

Scott Benner 12:46
with it with the and then your brother's got it too? How often do you see a doctor? And how are they measuring your success?

Craig 12:53
Back then? Yeah. Yeah. You know, I don't remember how often I'm gonna say it wasn't that often. Okay. And I guess success was being alive once a year, twice a year. You know, I don't remember all that. Exactly. So, so anyway, you know, as time went on, and I got into my, I'm gonna say, mid 20s. I had moved from the city in that I was living in to South Jersey, where I live now actually Central Jersey on the coast. And at that time, obviously, I had to switch doctors. So I left the juvenile Doctor treatment that I had in the city and went to a normal endocrinologist and the gentleman happened to be extremely good. He was very big on the latest diabetes innovations. Okay. He was like, part researcher, part endocrinologist. So he was he was, he was really good. However, still, you gotta remember that at that time. You know, even though he was up on the latest technology, it wasn't really that advanced. Yeah. However, the insulin pump had come along, and he had been kind of trying to persuade me to try the insulin pump. For I'm gonna say at least two years, and for some reason, I resisted. Looking back on it, it's so silly. You know, I didn't know if it was something they cut you open and plant it in. Yeah, I didn't know anything about what an insulin pump was. No kidding. Now, so,

Scott Benner 14:42
Greg, do you want to do something for me before you go on? I think your microphones working from your laptop. So can you sit forward? I like you better forward.

Craig 14:51
How's that any better? Yeah, it's

Scott Benner 14:53
definitely different. Yeah, if you can, okay, if it's not uncomfortable, if you could stay there, that'd be terrific. No, that's fine. Okay, so it takes him So he's saying insulin pump to you, but you're not even getting enough information to know that it's not a thing that they cut your skin open for,

Craig 15:07
I guess you have these preconceived fears, you know about a change. You know, I want to I want you to understand Scott along this whole route. I didn't think my control was that bad. I thought this is the best you could do. I mean, I didn't have any other knowledge to say, hey, there might be something better that I'm not even considering.

Scott Benner 15:28
Your health is good for these 15 years that we're talking about here. 11 years old, mid 20s.

Craig 15:35
Yeah, I'm gonna save control wasn't that great. But health was very good. Yes.

Scott Benner 15:40
All right. And if you are bouncing high to low your body's kind of accustomed to it. Do you stop feeling lows after a while? Not at that time now. You

Craig 15:49
still felt I didn't? I didn't start feeling lows until my late 40s. Oh, you

Scott Benner 15:54
didn't feel lows at all? You knew would? How did you know you were low? Dizzy. No, I

Craig 15:59
knew lows back then I'm saying I didn't stop feeling until the late my late 40s. Prior to that, I felt lows constantly. Okay.

Scott Benner 16:08
So you felt them? So you were bouncing? You were high and you were low? Did you feel unwell when you were hired?

Craig 16:13
You feel kind of bloated and sluggish when you're high, but you push through it? Same thing when you're low? You push through it?

Scott Benner 16:21
I hate to say that? Well, that was the bit that was that was all you had really. That's all I knew

Craig 16:28
I you know, there, there probably was better treatment, education and better treatment tools. But if you don't realize that what you're doing is not the best it can be. You don't ever change. And that is a problem. Yeah, no,

Scott Benner 16:45
it definitely is.

Craig 16:46
That's one of the points that I wanted to kind of make with this whole this whole interview was that, you know, change is something as a diabetic, you have got to adapt constantly. I agree. Yeah. Have you ever heard before right now is not good enough compared to what you're going to do tomorrow? Right?

Scott Benner 17:05
Yep. And stuff they come up with, like, I always say, I keep it kind of simple. What I say is, I wouldn't jump from technology just because a new thing pops up. But you can't get so comfortable that you find yourself 510 years later, and everyone's using an algorithm or something and keeping the right one seeing the sixes without even trying and you're back there going, this is fine, you know, with your eight a one se or whatever is going on, because it does get better. And if you don't keep up with it. I mean, it's gonna catch up to you, I think.

Craig 17:37
I think there's a certain denial. At least in my self, there was a certain denial that it couldn't be better. I thought that, hey, I got diabetes. And this is it. This is what it is. This is what it feels like every day, this is what you do. This is what every diabetic deals with every day, you know,

Scott Benner 17:58
is there any? I mean, you're you're an old enough man to have thought about this stuff. So if you consider that there's better does that make you feel like Oh, I haven't been doing as well for myself as I could have like, does it make you feel badly to consider that there's more? It makes sense. Not really.

Craig 18:17
I'm thankful that there's more. You know, anyway, let me get back to the story with my doctor. So he suggested us insulin pump. Finally, one day, I hate to jump around on your bed. Finally, one day I get I go to his office for my whatever, bi yearly visit. And he got an insulin pump in the office. And he says, You're taking this home with you? And I said, I don't know. I don't know, you know. And so while I hemmed and hawed and ended on and finally I said, Okay, I'll take it home with me, Scott. It's sat in my in my hallway in my house for a year before I started on it.

Scott Benner 18:57
I've heard stories from people back at the beginning of CGM, who would say I mean, up to Victor Garber was on this podcast. And he told me I asked him about a CGM. And if I'm remembering this correctly, he says, I have one of those. It's in my drawer. Yeah. And I was like, Victor, I think you should try it. So I take your point, so it sits in your house for a year

Craig 19:19
or a year. So anyway, one day I finally think, Okay, I'm gonna try this insulin pump. So I get it out. I read the instructions. I call the trainer they come over to train me how to use it. And Scott, it wasn't one day when I realized that I had been making a big mistake. Yeah, I imagine it was that it was that much better.

Scott Benner 19:44
today's podcast is sponsored by the ever since CGM, boasting a six month sensor. The ever sent CGM offers you these key advantages. Distinct on body vibe alerts when higher low, a consistent and accept General accuracy over a six month period, and you only need two sensors per year. No longer will you have to carry your CGM supplies with you. You won't have to be concerned about your adhesive not lasting, accidentally knocking off a sensor or wasting a sensor when you have to replace your transmitter. That's right. There's no more weekly or bi weekly hassles of sensor changes. Not the ever since CGM. It's implantable and it's accurate ever since cgm.com/juicebox. The ever since CGM is the first and only long term CGM ever since sits comfortably right under the skin and your upper arm and it lasts way longer than any other CGM sensor. Never again will you have to worry about your sensor falling off before the end of its life. So if you want an incredibly accurate CGM that can't get knocked off and won't fall off. You're looking for the ever since CGM. Ever since cgm.com/juicebox. Yep. Yeah. Well, and what did that mean for you back then? Like, what was the first thing that you thought, Oh, this is better? Is it just not injecting? Is it having more control over the insulin? What part?

Craig 21:14
I'd say it was 75% not injecting and 25%. Slowly feeling like you had better control. I mean, when I say better control, I don't think it would have improved my agency greatly right off the bat. But the fact that it kind of alleviated some of the peaks and valleys. Okay, back back, then there still wasn't any compatible GCM. That CGM that worked with the with the pump was pre it was pre that time. So you still had to stick your finger. So that was kind of a big obstacle.

Scott Benner 21:51
Yeah. And is this? I'm trying to do the math. So if you're 11 and 7585, nine, is this the early 90s, early mid 90s.

Craig 22:00
I went back and looked at the timeline for pump introduction. And let's see, what did I find out here on my notes? Where did I write that down?

Scott Benner 22:13
Do you remember what kind of pump it was?

Craig 22:15
Yeah, it was a mini med 530 G, which was in 2007, I believe.

Scott Benner 22:22
Wow. Oh, so you were you're you're older than your mid 20s? By then? For sure. Yeah, yeah. Yeah. Yeah. Sorry. Yes. No, no, no. And so And what's your blood sugar testing? Like at that point, you have a meter. But are they very accurate? Like this time as time goes on? And meters get better? Do you look back at them and think, Oh, God, I don't even think they were very accurate or just so much better than what you had, like who cared? Well,

Craig 22:48
I guess before I had the, the test strips that you urinated on. I mean, come on. I mean, compared to that, it was like, it was so much better. I mean, it gave you like a number or whatever I forget, but it was a pretty antiquated looking device by today's standards.

Scott Benner 23:06
Okay. I guess anytime you're not paying on your hand is an increase in your happiness. Yeah. And

Craig 23:12
I hate to say but you don't do it. Yet. As as as a kid growing up, how many times you're doing that a day? Yeah, once,

Scott Benner 23:20
right? Even when you did it when you're just shooting once or twice a day anyway, like if you if you peed on that strip. And once your mom said, hey, it's yellow. would she do anything? Scott,

Craig 23:29
it was always yellow. Gotcha. There was no other color on that test trip. As far

Scott Benner 23:35
as I was concerned. You just named your episode, right? Yeah. Well,

Craig 23:39
it was I just was I hate to tell you, but it was for all the years I use those stress test strips. I didn't even know if they were any good.

Scott Benner 23:48
And that's something. So it's this almost meaningless endeavor. You figure that out? Stop doing it. Yeah. Blah, blah, blah. So are you do you think? Was your mother adjusting your insulin based on your weight? Or do you think the doctor did that? Like once a year, maybe you went in there? And he's like, just here, make it this now instead? And that was kind of it right?

Craig 24:08
Yeah, I really don't know how that was determined. All I can tell you is it was pretty arbitrary. I gotcha. All

Scott Benner 24:15
right. So now we're on the pump. And you're you have your first, by the way, isn't it great that that your first pump, the biggest takeaway was, Wow, I don't have to inject anymore. And now we're sitting around talking about pumps. And we're getting to the point where we're like, Well, with this algorithm, you don't even have to do this. And when this algorithm it does, like it's it's so great, how far it's come, but you're happier. I imagine you're not injecting there's not needles all over the place. At what point do you start using the pump as more than just a way to not have to inject like when do you start understanding the power of it better?

Craig 24:49
Well, without the constant glucose monitoring capability, that was still very much a guess. Everything was a guess. How am I insulin you decided to tell the pump to give you was a guess there was no carb counting. No real testing. You know what I mean? So you kind of just went with it. what worked yesterday you did that again tomorrow. You know what I mean? And today? It wasn't. There was no science wasn't any science, it was just a better tool than it then is faring

Scott Benner 25:24
better than jabbing yourself. But tell me this again. There's no, you hadn't been taught to count carbs at that point? No, no. Oh, wow. And

Craig 25:33
if they did try to teach me that, look, I'm a young man. I'm busy. I have a career and I don't have time for all that. When am I going to do that? How am I going to tell him when he carbs are in and McDonald's cheeseburger? You had no board back then I told you how many what the book The nutrition facts? Were right. So you Penny No,

Scott Benner 25:53
yeah. So you pick a number or an amount of units. And if you don't get dizzy afterwards, you're like, oh, this might work. And

Craig 26:02
guess what? Or you ate something? If it didn't, if it was too much, you know, three hours later, you had to stop at 711 and get something to eat and grab something Oh, like, I you know, fruit, a fruit of fruitcake or candy bar. I mean, I Oh, obviously, a lot of times I carried that with me constantly. Every day, I needed to treat low blood sugar. I'm gonna say for the first 35 years of my life every day.

Scott Benner 26:29
And so almost like, I don't know, like a scale of justice, where you're just kind of pouring insulin on one side, and then you're holding food in your hand and dropping a little food on the other and just trying to keep those scales as balanced as you can, based on how I feel. I got it. Okay. That was that was the method of control that was

Craig 26:49
now seems ridiculous, but

Scott Benner 26:51
that's what it was. Listen, I wish this wasn't your story. Right. But I like it being told it wasn't that bad. Honestly,

Craig 26:57
Scott, I was very successful, I will be able to do anything on non bi diabetic could do. Sure. So it didn't it didn't stop me. Was it a little harder for me? I'd have to think it was Yeah. But it didn't stop me. You

Scott Benner 27:12
don't think of your life when you look back on it as being difficult? Well,

Craig 27:16
it was the it was the hand I was dealt. And you know, to think oh, I can't do this. Because it's too difficult is just an excuse. Yeah, no, I understand. You know, I mean, I don't think that that that gets you anywhere. Yeah. Do you

Scott Benner 27:34
have to get married at some point or have kids? I

Craig 27:37
did in 1992. I married my wonderful wife, which was awesome. But we do not have any children. Okay, was that on purpose? Or my wife wanted to have children. And I kind of was against it, although I would have went along with it. But luckily, and Mike he and I wasn't really I didn't want to bring a diabetic into the world and be honest with you. That's what I was wanting. Yeah, yeah. No, of course, I always thought that. I

Scott Benner 28:04
don't know how it's funny. I've talked to people who come down on both sides of that argument. And I've understood everybody's perspective along the way, I can tell you that when Arden was diagnosed, like we still considered having another child, and I really do think diabetes stopped us from having a third baby. Now, I in the beginning, it would have definitely been been because I didn't we didn't know what we were doing. And if we would have had to do it twice, it would have been a mess. But by the end, it might have been more about our exhaustion than diabetes. I can't I'll never really know for sure, I guess. Well,

Craig 28:37
Scott, you're not you're not a type one diabetic. Of course, you've been able to watch your daughter all these years and you know, experience through her what it's like to be a diabetic. But I can tell you from my point of view, you never want anyone else to become a diabetic. Never. Yeah.

Scott Benner 28:55
It's one of those. I wouldn't wish this on my worst enemy thing.

Craig 28:58
Not in a million years. Yeah, I understand. Now, there are worse diseases in the world. Don't get me wrong, but that doesn't. That doesn't take away the fact that somebody should become a diabetic. That's crazy. No, nobody should become a diabetic. In my view.

Scott Benner 29:13
It's tough. Did your mom ever get to see the improvements in care? And did she?

Craig 29:18
Yeah, both my mom and dad are still alive. Oh, geez, how old are they? My mom is in our hair. Early 80s. And my dad is in his mid 80s

Scott Benner 29:30
to either of them have autoimmune issues. Not

Craig 29:32
really, you know, in my home in my whole family. And that was of course, one of the questions initially in the family was well, how did you guys get diabetes, you know? Sure. And I had one of my grandfather's cousins that was a diabetic Other than that, zero other people with any kind of, you know, again, back then. I don't know all of this. Disease and immune diseases and everything weren't quite as obvious as they are today. But but no other signs of immune diseases or diabetes in our family before my brother and I, your parents have arthritis or No, no, their stomachs aren't unsettled they can eat. Well, no kidding. That's something. Yep. Yeah. Wow.

Scott Benner 30:22
How about your brother? Did your brother end up having kids? Yes. Do they have any autoimmune stuff the children know

Craig 30:29
about that. Wow. That was in so far. No problem.

Scott Benner 30:33
You guys are just super lucky. Greg. That's awful. You and your your brother? Do you still talk? So let me go back to you get in the pump. Now. There's your brother have a pump when that happens to you. When you get one. Wow.

Craig 30:45
Not initially. So I got the poem. I was the pioneer, so to speak. And it was I'm going to tell you it wasn't a week after I got the pump that I said to my brother Mark, you gotta get a pump. And it took him like another year or two to get one. I guess we're cut from the same cloth.

Scott Benner 31:03
It sounds like it sounds stubborn guys. Yeah, but But you did. But you were able to get him to get to it eventually. Oh, yeah. Yeah. And

Craig 31:13
he he absolutely said the same thing that it was a huge improvement. And he should have done it sooner. No doubt. Right.

Scott Benner 31:19
Okay, so you're going along like that? When's the first? Like when's the first time you're in a more modern method of management. You're you're thinking about carb counts. And, you know, like that kind of stuff. Like when when do you get into more of a? Because you're there now. Right? Greg? I'm not wrong. Oh, yeah. So

Craig 31:42
when you hear I'm in like the super advanced class class right now.

Scott Benner 31:46
When does that start to happen? And what do you think brought you into it?

Craig 31:51
Well, in 2018, my pump warranty was up on my second mini med pole. And I had tried the Guardian CGM with that. And that was and that didn't work out very well. So when my pump warranty was up, I started looking for other device manufacturers that might have a better a better device for treating diabetes. So I went to the T slim x two with the Dexcom. Five. Oh, okay. Very nice. And yeah, my doctor and everybody, you know, showed me how to carb count and, and all that. And you know, the Quick, quick couple of minutes when you have an appointment. However, I really never never jumped on that boat of counting carbs. However, you know, now you have your blood glucose measurement constantly. So it made the decisions about guessing how much insulin to take a lot better, even without counting carbs, when

Scott Benner 32:53
you see that CGM for the first time. Does it blow your mind? What do you think? Like, I never knew what was happening, or do you have the thought like, Oh, I thought this what was happened? Like, didn't you mean? Like, what did it open your eyes to or or open up for you?

Craig 33:08
You know, gone back? It's it's hard to imagine me. I mean, it's hard for me to remember exactly what it was like, initially, I'm sure it was an eye opener. But against God, you got to understand that, you know, I'm using this as a crutch, so to speak, to get on with my life. Okay, diabetes was not the focus of my attention. Like the main focus my attention, until maybe the last I'm gonna say the last three or four years not that I was out of control. My agencies were always in the sixes. You know, it just, I thought about things I was doing in life, things I wanted to accomplish. You know what I mean? It really, I guess, diabetes, were just not number one. Well, the way

Scott Benner 33:52
it's sounding to me is that see, the way you start? The management is what it is. It doesn't exactly put you on a path of paying close attention to it. And then the pump comes the pumps just a way to get rid of the needles, which is terrific. And then the CGM comes in the CGM, sort of just a way to get rid of like the fingerstick testing to you. It's not you're not looking at it. Like, I wonder what I could do with these things. You're like, this is making my thing easier. Now back to life. That's it. That makes sense.

Craig 34:22
It was a it was a convenience feature. Yeah. Like, oh, I could just look at this. And then that can guide me a little better to what steps I should take as far as insulin management. But it wasn't. It wasn't all of a sudden, like I focused on the readings all day long. No, that didn't happen. Yeah, no.

Scott Benner 34:40
And by the way, I don't expect that this is just because of when you were diagnosed. I don't imagine that that's not happening to somebody right now who was diagnosed a year ago, who's just not looking to be all up in this thing and in constant with it and not wreck or maybe having the same thoughts as you like, maybe this is good enough. I'm standing up You know, I'm doing my thing. Um, it's not stopping me. Why do I need to look farther in this? Or who would even know if there's more? Because most doctors don't talk about it to begin with? Yeah,

Craig 35:09
I'm sure that that whole train of thought is 100%. Right on target. Yeah,

Scott Benner 35:13
that's what I think too. Okay. All right. So, a couple of years ago, you decide or make a leap or something happens. What, what, what in God's name moves you after all this time?

Craig 35:22
Well, in 2020, I switched to a newer 10 To mix to control which was a control. Basal IQ. Yep. Which which regulated your Basal sunlight. And that was a small improvement. And then about a year later, I guess they came out with the control IQ, which was even a step in better in a better direction. And then you're gonna love this. It was only recently May. So right now we are in the end of August, right? In May my pump warranty on my latest tandem T slim. expired. Okay, so every time you know, your pump warranty expires, you start looking okay, which which pumps should I get? You go to the pump store, and you look around, like you're looking for a cell phone, which one has the best features. And what I saw was a world that I never knew existed. Where all the information and technology that had come so far so fast, it blew me away.

Scott Benner 36:30
Yeah. And I, by the way, I don't even know about that whole warranty thing, because Arden has been on a Omni pod her whole life. So I don't think of it that way. Like, she doesn't have a device that gets older and we got to replace it. At some point. She's wearing a new pod every three days. And it's just that it's not how my brain works. But it's interesting the way you describe it. What? So what did you see when you went out there and looked around?

Craig 36:53
When I started to look, I saw two great options that I didn't know existed, okay, the one option was the beta bionics islet pump, which I obviously was really interested in and read all about it and signed up immediately, you know, for the pre order and all that kind of thing, but because I knew, you know, one of the gripes that I had with my tandem control IQ was it was too conservative. It just didn't do enough. So, okay,

Scott Benner 37:25
how so? Was it not attacking your meals as well as you'd like? Was it not keeping? No,

Craig 37:31
no, no, it was it was it was like the, the amount of change that the tandem pump made was so small, it was insignificant, okay. It wouldn't ever capture me quick enough to stop the lows, and it would never give me enough insulin to stop the highs. It moderated them somewhat. But in day to day life, it wasn't a big help.

Scott Benner 37:53
I love that you went from decades of like, this is fine to you're like this not aggressive. That's fantastic.

Craig 38:00
Well, because as you start to gain insight that there are tools available, you really want more. Yep. It's like getting a new car. And all of a sudden, the next year a car comes out with more features. Don't you want the new car?

Scott Benner 38:13
I'll tell you right now this is this is showing you what access gives people? Ya know, it's

Craig 38:19
it's unbelievable. I'm right now it's coming at such a rapid pace compared to what had been done the previous 30 years. Yeah, it's incredible.

Scott Benner 38:26
And listen, you're you're literally excited, you're giddy about it actually does even talk about

Craig 38:31
it. Because because it's great for all of the people now if they can learn and take advantage of it. You know, that to me? Seems like the biggest stumbling point right now is, is the AI? How do you get it out? And tell everybody you know, if the doctor doesn't tell you who's gonna tell you, you're telling people, which I think is, is just phenomenal. But I don't know, is everybody listening to the podcast? I hope they are. But I don't know if they are.

Scott Benner 38:59
I don't have everybody yet. Craig. I'm working on it. So it really is. I try to make the point over and over again that. And I've been thinking about this a lot lately. Because Jenny and I, and I'm sorry, I don't know your level of understanding of the podcast. But it sounds like maybe part of your understanding is coming from the podcast. So I'm gonna definitely yeah, so Jenny and I are working right now on putting on putting together a series for healthcare professionals to walk them through all of the process is from early diagnosis to early at from, you know, early education into understanding insulin like that whole thing. Like we're basically going to put together a podcast series that hopes to teach doctors how to talk about diabetes in a way that won't leave people lost. And just keep going over people's notes and letters and things that they send to me, because I've asked for feedback on this. It's a crime that you would get diabetes in a hospital and someone would tell you, it's just enough to keep you alive. which is what happened to you 50 years ago. And then they get to a doctor who oftentimes won't give them much more information than that. And with the technology being what it is right now, and even before that, like not telling someone how insulin works, I don't know how you manage a person with diabetes without giving them a firm understanding of insulin and what it's doing and how they can use it more effectively. And so I don't know, just hearing your stories means extra to me today, because it's easy to think. Yeah, this happened to Craig because he was diagnosed in the 70s. But if you don't think somebody being diagnosed today on August 24, isn't being treated the same way you are, you're you're not seeing this clearly. The you know, the the people who find this podcast and listen to it, there are a small fraction of the people walking around using insulin. And that that to me is is a shame. So yeah,

Craig 40:55
no, definitely. So I you know, I think today with the, with the evolution of the Internet, and of course, that has come so far, so fast, it's dizzying how fast it all comes out, you know, but that in diabetes is a good thing.

Scott Benner 41:12
Yeah, million percent access to tools, information, other people's stories. It's, it's what speeds everybody up, and gets them through it. And it's exactly the opposite of how the medical community thinks about disseminating information.

Craig 41:30
I don't know why they don't change. I don't get it. Yeah, well, I don't know what either, although I hear I hear that over and over on your podcast that, you know, the people that are supposed to be supporting you don't give you the information that seems so obvious or worse, don't understand it themselves. One or the other. Maybe that's why I don't know why they're not giving it to you. All I can tell you is, from what I've heard, and my own experiences, and I have nothing against my endocrinologist. I mean, I get it, they only get paid so much. You go in and look, every time I go for my visits. I'm doing good. I'm like the star patient. And this is before what I learned recently, yeah, that's with you on a reason that say, Well, did you ever think about change and trying this new thing? You know, even though they should have they didn't? That's

Scott Benner 42:23
such a good point, you start getting judged against the people who are doing so poorly. You look like yours? I mean, what do you sit in there with your tandem? T slim? What's your a one say?

Craig 42:32
i A one C was in the mid 60s 626466. You know, it fluctuated a little bit. But right around that range consistently over the past four or five years.

Scott Benner 42:45
And that's very good. But what you're saying is, is that because somebody else coming in after you in that office is walking in with an eight or a 10, or whatever, you're like, you know what it is? It's like there's three kids. And one of them's a great student and the other to struggle. So no one ever helps the grade student with their homework. And that person that kid inevitably always whenever you meet them as adults will tell you a sad story about when I was in school, my parents never helped me with my homework. And I and they'll tell you I know why it's because I was doing better than the other ones and other people needed help too. But it still has a really bad effect on them and that's the same thing you're walking there with your six to and nobody's talking to you about anything because they figure you must have it all figured out. By the way you live your whole life with a six to it'd be amazing it doesn't mean you don't deserve more information or you know an opportunity at the very least you went looked at the island now the island is kind of talking about holding a seven a one C for people but with all you have to do is tell it I'm having a big meal a small meal or extra large meal. Would you do that? Would you take extra a one C for that? That comfort? Wow.

Craig 43:58
In the beginning, I was really attracted to the No to the less work yeah. However, I think switching from a tandem Yes, I would have I would have accepted the seven to do less work because the tandem still requires a lot of user input constantly. It's just the algorithm is like I said it's not it's not up to the job so you're always tweaking it always Yeah, so I'm thinking wow if I get this eyelid I don't have to do all the tweaking all I do is live my life and that's what they're kind of advertising and and maybe that's true. I don't know I don't have it. Yeah, I haven't even been able to find that many people reviewing what it's like it's very slim at this point. Yeah, I

Scott Benner 44:45
don't think a lot of people are wearing it to be honest. At the Yeah, I

Craig 44:48
don't know if they like it or not. I mean, I don't I don't see it out there. I don't see any information on on the results, you know, outside of a

Scott Benner 44:55
few smaller company. It's gonna take them a while to get it out in the world. Here's what I think I'd be happy to share what I think about Ireland in a couple of sentences. Most people who are living with a one C over seven, I think it's probably a no brainer for them. Put it on big meal, small meal, medium meal, boom, I have a seven and a one C in the sevens, I'd say sign me up if I was in that situation, if you're you, and you know what a six, two looks like. Now, if you're a person who can get an A one C and the fives, you know, you're not going to be looking for that. But to your earlier point about how fast technology is moving, who knows when we're going to wake up and the people that I let are going to be like, Hey, I let keep seeing the sixes, hey, islet we're shooting for like, I don't know what they're gonna keep doing it. They might

Craig 45:43
be it might be capable of that. Now, I don't I don't know. Because I don't have any reports. I have no evidence.

Scott Benner 45:49
They're very clearly saying in their marketing, that they're shooting for sevens and he was pretty well, they're not they're not they're not over promising. Yeah, we'll see. Yeah, to your point. Or maybe it's something that they had to do with the FDA for set. Like I have no idea. I can tell you that tonight. Yeah, I can say this on here. Tonight. I gotta think about when things happen. Like when people hear it, not just what is happening here. Yeah, we're gonna sit down tonight and build art in an Iaps. System. And okay, I did that already did. Yeah. We're gonna move her off a loop and try Iaps and see what that is. So yeah, so all this talking. We don't know what you're doing right now. Correct. Like, what is your management right now? What do you get into that? Yeah, you're doing a good job laying this out. By the way. I said you never did this.

Craig 46:33
I'm glad I'm keeping you on the hook. I

Scott Benner 46:35
know you're doing a great job of telling the story.

Craig 46:39
I love killing you.

Scott Benner 46:41
I love I loved earlier when you said I'm sorry for jumping around. I was the one jumping around you were the one trying to get back to the story. So but go ahead. I'm sorry. Good. So what do you what are you up to now?

Craig 46:51
So when I started to look, I know I told you I found the islet, but I also found a really, really fantastic option. I discovered that we are not waiting movement. Okay. And the more I learned and the more I studied about the movement and all of the advantages to DIY systems, I was immediately convinced this was the way to

Scott Benner 47:22
go. Yeah. That's hard to argue with. That's for sure. What did you end up doing? Did you loop?

Craig 47:27
I did not live because I don't have an iPhone. I have an Android. Oh, you did? APS. Oh. So that that pushed me right over to Android APs. And it wasn't easy. Scott, I read all that documentation. I don't know how many times and I'm not gonna you know, kid, anybody that transitioning is easy. However, it wasn't just about Android APS, the system, the algorithm, it was about the learning. Okay. The learning about carbs. The learning are about, you know, different type of carbs, the learning about insulin, the different types of insulin, things I never knew, which is crazy. In this day and age. I have no idea.

Scott Benner 48:10
I don't think it's crazy at all. But I love that you went on the trip and you learned

Craig 48:14
Wow, it was it was I'm telling you I've been obsessed. For the past three months. I've been obsessed, because I know that if I can get all this in my brain. And you know and make sense of it all. It is absolutely the way to go. Right now. There is nothing that comes close. Nothing. These people are the greatest gift. The diabetes ever. Yeah, I think I agree with you. I really don't. They're all volunteers. They all do it because they don't want to be diabetics, either. Yeah, they want to be free of diabetes. So they have decided to make a difference. Yep. It almost brings me to tears that all these people are working this hard. Yeah. For free. Yeah. And then they just let all of us join in for free.

Scott Benner 49:05
It's uncommon to me, isn't it? Oh, it's

Craig 49:07
unbelievable. That me really shows that the world is is really full of great people. No, I

Scott Benner 49:15
couldn't agree with you more. I don't know them all, like by name. And it's a shame that there's there's no way to like categorize them all over. I can just tell you that when somebody brought it to me the first time and said, Hey, I think you should try this. And we got involved. It was the same process. I didn't know what I was doing. I'm lucky enough to have the podcast, like people helped me build apps and things like that. So like when I said tonight, we're gonna make IEPs What I meant was, Mike, who's the guy who has been on the show before is when it's, it's good to zoom in with me and be like, click there, dummy, click there, dummy. And I'm gonna and I'm gonna do that. And so we've been lucky that way. But I agree with you like, one of the first. Listen, I was pretty good at diabetes before loop. I had Arden say one scene fives I knew what I was doing. Like all that stuff I talked about in the Pro Tip series, I pulled it together and I would do it Temp Basal Ling. You know, extended Bolus is like, you know, peppering insulin across timelines, like stuff like that is when you stop and think about it. After you've seen looping. All I was doing was I was acting like an algorithm. Yes. And then when you see the algorithm, I mean, I've said this so many times, I feel like I'm repeating myself. But when you watch the algorithm give you more basil, or make a Bolus out of nowhere, or take basil away. That's when your brain goes, Oh, my God, like, we're lucky to be doing this. Well, with a static Basal rate. We're lucky to be doing this well, with injecting basil like, I don't even know like, how many variables like you were talking about as a young person? How many times am I eating or exercising or doing something like that to make my body fit into the way I'm giving it insulin? Instead of making the way I'm giving insulin fit what my body needs? Like, that's just a super switch over and it teaches you so fast about diabetes, when you watch it work? I know the excitement you're having because I had it years ago, and you're it's like, somebody pulls up the curtain and goes here. This is how it actually happens. It's fantastic.

Craig 51:13
Oh, it's amazing. I mean, you know, the Android APS has one feature that I personally, I think is a great feature that Lupin and IPS don't have not that I'm knocking them by any stretch of the imagination. But one thing I'm gonna say that that is included in and varied. APS is the forced learning. Yeah, you have you have to learn how to use the app and understand how diabetes management works. Before you get to use the company. All the features on the app. Yeah, yeah, basically, you I just, I just, I just finished my learning. Yesterday. I completed all of the all the objectives yesterday. Oh, no kidding.

Scott Benner 52:04
So So explain that to people me three months, explain it to people a little bit you you build the app, but then you basically have to, like answer questions to move forward to unlock the app as you move. Is that right? Am I understand that correctly?

Craig 52:17
Yeah. And the questions are complex, to say the least. But they have accurate, excellent documentation that the volunteers have all put together, that that obviously, in detail, explain all of the every fact every every facet of diabetes, as explained in these documents, and whatever is incorporated into this app, they develop the questions based on knowing all that information, like you know exactly how to carbs impact you and how long it in your system, and on and on and on. And if you don't get the questions, right, you can't move ahead. Yeah. And they're not easy. My wife and I sat. And, you know, at one point, I had to say to her, Look, you got to help me with this. I can't figure it out. And we'll read through the documentation and trying to come up with the answers. And it was, it was really a great exercise. Looking back at it. Was it frustrating at the time? Absolutely. Sure. But do I think in the end, it was a great learning experience, the best it was, I don't know how to develop such a, such a clever way to go about letting people use the app by making sure that they learn that to me is is incredibly important. Smart

Scott Benner 53:46
people, you know, I mean, really, hey, I'm gonna ask you a bit of a bummer question. I'm gonna put it in here now, because I don't want to ask it at the end. Sure, if Android APS existed, when your wife was talking about having a baby, do you think that would have changed things for you? No, no, you okay? You're, you're more

Craig 54:03
I guess not gonna. It's not gonna stop my genetics. Gotcha. Okay.

Scott Benner 54:08
I wanted to make sure I understood. I was like, I wish Yeah, no, I understand. Okay, how long have you been using Android APs.

Craig 54:17
I started on June 6. And in the beginning, I stayed on my tandem pump. And I set up the Android APS system on my on my phone. I built the app, which again, that wasn't easy, either, but anybody can do it. But it takes patience, but I did it. I'm not a computer geek by any stretch of the imagination. I'm unlike you, Scott. I grew up in the sheetmetal business, did you but anyway, yeah, yeah, I own my own HVAC shop.

Scott Benner 54:46
Oh, no kidding. You. Also you and I live oddly close to each other. Because yeah, no, I

Craig 54:51
when I heard that on the podcast, I was like, wow, sheetmetal guy and he's in New Jersey. That's unbelievable.

Scott Benner 54:58
So you built your app. and you're using it with the tandem pump. So that's I don't know about APS,

Craig 55:04
no, I didn't use it with the tandem pump, I kept the tandem pump on. Okay. And now I had an old mini med pump and I got the orange link similar to like what you do it loop. And I set it all up. And now I was able to run it alongside without attaching it to myself for like a week, I think to get a feel for how it all worked without without putting myself in jeopardy, so to speak, because I wasn't sure I knew what I was doing. And that is explained in the documentation that you should kind of do a trial without it attached to you. And that that was really the key to getting a feel for the app and all of the different settings and how to use them. Even though you know, in the beginning, you're certainly not an expert. Right. But you know, you're tiptoeing into it, instead of jumping in i It makes

Scott Benner 55:55
a lot of sense because it makes it available to people who are willing to do that work. And that I think is, again, that's access and it's options. Not everybody is going to do what you did. Not everybody's going to like there's plenty people who hear this and gray, that'd be wonderful. But I can't do that, or I don't want to or I'm not willing to put that effort into it like they know themselves. Right? And it's not, it doesn't give you it's what is it like? It's like making you go over a three month obstacle course before you drive a Ferrari. Like if everybody can relate, yeah, if everybody could just jump into it and go, there'd be a lot of crash Ferraris at the end of the street. And so we don't we don't want that. So the process weeds out people who might not do well with it. And I think that's

Craig 56:39
that's the part that I'm really not that happy about. I don't want to weed anybody out from being in better control.

Scott Benner 56:46
Yeah. Well, I mean, I think all we can hope this is me. I think all we can hope is that all the pump companies keep hearing these conversations about these, these DIY things and say to themselves, can we bring that level of control to the masses? Like, how can we do that? I hope they're all thinking about it, you know, because it's great to put somebody in a not counting carbs situation and give them an A one C and a seven, I think that's terrific. But if you can do that, can you keep working on it and put them into a different situation with a more stability? A lower a one C? Like that kind of stuff? Like I hope they keep all going after it? You know,

Craig 57:24
I think they will just is the pace quick enough. For me. It's never quick enough for me

Scott Benner 57:31
right? Now. It's gonna be fine for a kid against diabetes 20 years from now, but you're sitting here 61 years old, you need it now. So yeah, I

Craig 57:39
mean, it's great to have it now. And honestly, you know, one of one of the main points that I wanted to, you know, bring bring about, you know, by coming on the podcast was that people have to, I should have been looking more along the way, I should have been more open to change. Yeah, and I wasn't. And that is a big mistake.

Scott Benner 58:07
I'm glad that you're willing to share that message. And I don't know how much of the podcast you've ever heard. But that's been my attitude forever. And I can't take credit for that. It's because my friend Mike was diagnosed, you know, when we were in our late teens, and he just didn't move along with things. And now even just hearing your story is upsetting for me, because I think this is what happened to Mike. And like, what's the randomness that allowed you to go forward healthy, didn't allow Mike to do it? You know, like, we'll never know what that is. But yeah,

Craig 58:41
that's, that's, that's tough. And I really, I can't explain that myself. Honestly, I am one of the healthiest people. I know. I mean, I have friends that aren't even here anymore. It's 61 and all my type one diabetic for 90% of those years, and I'm still here. It's crazy. No,

Scott Benner 59:03
I know that, that that bit of it is I mean, that's the unknown part about life in general, but

Craig 59:10
not this kind of the other. The other point that I wanted to make as far as I'm living with, with with diabetes is, you know, I use it as a motivation tool during my life, that look, whatever I wanted to accomplish, whether it was sports when I was a kid, or you know, as you get older, getting married and finding the right woman or, you know, I built my own house, I I have a boat in the Caribbean. I have an island in the Caribbean, I house on an island in the Caribbean. Anything I ever wanted. I use diabetes as sort of like the motivator like, hey, I can do this. In spite of diabetes. If I want to do it. I'm going to do it and I want to make sure that I can say diabetes didn't stop me.

Scott Benner 1:00:03
I think you can say that. That sounds that sounds for sure. Well, I appreciate you coming on and sharing that perspective. I really do. Would you tell me what Island when we're done like not where people can hear but when we're not being recorded? Yeah.

Craig 1:00:17
Okay. Why do you want to go to an island? Everybody wants to go to an island Scott, especially if you were working out in the cold as a as a sheetmetal? Worker.

Scott Benner 1:00:25
No kidding. You did HVAC your whole life.

Craig 1:00:29
I started an HVAC around 1985.

Scott Benner 1:00:34
Were you union shop?

Craig 1:00:37
I was both non union and union. We're an independent shop. Okay. But most of our work was done with government type contracts. Yeah.

Scott Benner 1:00:47
Okay. Because the work kind of dried up in Philly a decade ago. Right. Like, that's when I got out of it. Yeah. Because the buildings, the buildings went from being built to needing maintenance and the guys that were putting in the dock didn't some of them didn't shift quickly enough to the maintenance side of his I do I have that about right. Sort of

Craig 1:01:07
Yeah, I guess business in general is a lot like diabetes. It's always changing.

Scott Benner 1:01:13
Yeah, you got to save up. Is there anything we didn't talk about that we should have?

Craig 1:01:19
Oh, probably, but nothing I can think of right now. I really want to commend you for the for the work that you're doing with this podcast. I mean, when I found the podcast, which was to Facebook, by the way, and probably through that we are not waiting. When I when I started to do research into what that was all about. I discovered that Juicebox Podcast, it is absolutely a wealth of knowledge. And I know you've made the point many times where all you have to do is listen, and you're learning something. Where else can you do that? You can't do it hardly anywhere else. I don't know of anywhere else.

Scott Benner 1:01:56
I took the reading out of learning. I mean, come on.

Craig 1:01:59
Yeah, I think that's fantastic.

Scott Benner 1:02:02
I appreciate it.

Craig 1:02:02
I hope you're able to keep up with it for a good long time.

Scott Benner 1:02:06
I've been doing it for nine years. I'm not stopping now. So I appreciate it very much. And

Craig 1:02:10
I wish you and your your daughter, of course, the best of luck. And, you know, it sounds to me with your guidance. You know, even though I've heard in some of the podcasts that maybe you don't think that everything that you're suggesting gets through, she's a young woman, but at any time, she will realize that, you know, what you have been telling her is really sensible. Yeah. You know, as a young man, you can tell me anything, either, I don't think you would probably not much different. As you as you age, you realize that, hey, maybe somebody can tell me something?

Scott Benner 1:02:50
Well, when she went off to college, it was a big, it was a big boost for me, because I really watched her take good care of herself. Like, you know, college food is horrendous, you know, processed and not quality. And she maintained 6.4 I think while she was away at college on her own, she was gone for a chunk of time, like, three months. And then she was back for a little bit. But then she was gone for almost six months. And she did that on her own, you know, while being a freshman in college. So I thought she she between the the algorithm and the technology and what we've been beaten in her head slowly. But she really did do a good job. She had, you know, a couple lows. But she managed them and was really, I was really proud of her. So

Craig 1:03:35
if I if I can offer our nanny advice it would be to not let your dad build the Iaps as you do it. Let her look at it and watch it Oh, absolutely. Oh, let her do it or want to do it. That's that's the difference, Scott, that is the difference in getting better at anything in life and diabetes, especially. It's learning.

Scott Benner 1:04:00
She usually sits here when we do it. Maybe I'll I'll I'll shove her over in front of the keyboard instead.

Craig 1:04:05
Get her? Yeah, I think that it would be nice if she heard this and said to herself, hey, Craig is probably right. I shouldn't be just telling my dad, let me do that. Like on your own accord.

Scott Benner 1:04:17
When we get to that day. Correct? Then I'll know I'm out of this.

Craig 1:04:20
That's why That's why I never I never moved on to another thing. Yeah. I didn't know about it that maybe it wasn't available. I wasn't looking.

Scott Benner 1:04:31
Yeah. And I guess what you're you're totally right, that now that you're involved, now that you're in the game, you're going to keep paying attention to what's happening. And then something else will come along and you'll say no, that's not for me. But then something eventually will come along and you'll think yeah, that's a good leap. I'll take that leap. Let me ask you a follow up of a final question. Do you worry about or are you planning for when you get older? And like because right now obviously you're you're incredibly sharp and you know easy to talk to you have recollection and all that. But what happens when you start to get a little older? And you still have to manage your diabetes? Is that something you think about?

Craig 1:05:08
I think about it in general, it's hard to pinpoint what I'm going to do. I mean, you know, I'm not much of a pre planner, other than I know, it'll be different than today. That See, that's

Scott Benner 1:05:23
exactly how I think about it. I have to adapt, you'll have to adapt. But also the stuff is going to get better and better. And when you hope should make Yeah, I do, too, which I think should make it, you know, more manageable.

Craig 1:05:35
Well, I've been I've been reading about all of the new algorithm features that they're that all these great programmers all over the world are working together on and it is amazing. The thoughts and creations that they're working on. Scott is just amazing. Yeah. It's, it's, it's beyond anything I could imagine.

Scott Benner 1:05:59
I'm starting to hear about systems where people aren't even announcing carbs. And well, that's

Craig 1:06:04
part of this. Android APS right now. Yeah. So that's something else I'm looking forward to when they have the unannounced meals, which I haven't ventured into trying yet. But I could. And, you know, obviously, it depends on you educating yourself to what all the settings do. Exactly. And getting them fine tuned. Exactly. But right now there are, I'm gonna say hundreds, if not 1000, or more people throughout the world that are just eating, they're not doing anything. Yeah. They're just eating and letting the algorithm do its

Scott Benner 1:06:40
job. Yeah, that that almost made me cry. Just when you said that just now. And I don't have God,

Craig 1:06:45
and it's going to get better. Yeah, because they're working on what they call branches, which are new branches to refine that system to make it even better. Now, I

Scott Benner 1:06:55
know, I've been watching, I've been watching nice people work on loop for years, and they take an idea and they try something else. And like, Ooh, I love that. But I wish it did this, and they make little. It's fantastic. It really is. Um, it's so cool that you found it after the journey has been on honestly, it's really, really Yeah. So

Craig 1:07:11
for me going to one shot in a day that who knows what it did? Because this is i It's like going to the moon. Yeah, in your own car. I mean, it's just crazy. It's

Scott Benner 1:07:23
a great way to play it. And you trust me. It's unbelievable. That's

Craig 1:07:27
how far we're going to advancement it is. Yeah.

Scott Benner 1:07:29
And you will get them one day you'll get the thought in your head. You'll think I'm gonna try this no one else meal thing and you'll you'll look into it. You really you will. So Wow. Yeah,

Craig 1:07:39
I'm kinda I'm so happy with what I'm doing now. Still, like, you know, I listen, I've only been counting carbs for three months. God. Before that, it was all it was all guesswork. I have to tell you, we like like you say on the podcast, I look at a meal. Oh, that's six years. Yeah. That's what I did my whole life. Trust me.

Scott Benner 1:07:59
That's still what Arden does. Like we she and I had lunch together yesterday. And her food came out. And she's she just had a cortisone shot in her shoulder. So everything's a little wonky, with her blood sugars, but we're doing a good job keeping it down until till that initial hit goes away. But um, but the the meal came out. And she goes, she's looking at it. And she said, tell me how much you think I should Bolus? And she said, I'll tell you what I'm thinking. I said, Okay, so I got done. I said, I have a card number in my head. And she goes, me too. And I said, I have 60. And she goes, I have 65. And I do 65. Like she wasn't going to do 60 Because I said it but even just that was just looking at the plate. Like neither of us did that we both looked at the plate and came up with that number, you know, and it's very doable. I know that early on. I can't imagine people believe that. But eventually you just kind of get good at it. So And honestly,

Craig 1:08:54
even me, I mean, I look at all the labels, at least in the past two months, I'm looking at every label, I count the carbs, I convert the protein and fat into a car, you know, into a carb equivalent. I take the shot for the amount of carbs that are straightforward on the labels. And I enter the you know the fat and protein conversion into another button that stretches it out over three or more hours. Yep. But guess what, Scott? It's not exact science now, it still isn't exact so we're doing it your way gave you the same result. Probably and it is it a lot more less work. Yeah, probably but it doesn't mean that you shouldn't know how to do to carb counting. It doesn't mean that you can you know skip that but you don't have it's still a guess nothing is perfect.

Scott Benner 1:09:47
I agree. I really don't listen, I until Artem was on loop. We weren't counting carbs at all we were we were counting. We were looking at food and making like a a unit gas in our Ahead, it was actually getting loop that made art in, we had to reverse engineer we in the beginning, we'd look at the plate and go, Oh, that's seven units and then say, alright, well, her her ratio is this. So seven units means this many carbs. And that's how we were. That's how we did it in the beginning. And now she just looks at the plate and then a card number pops into her head instead of a unit number. It's just you can do it. You don't I mean, just takes and that's

Craig 1:10:23
fine. I think that's fine. Yeah. If that's the way you want to do it, that's fine. Because now what your glucose monitor, you're going to see your results. So when the same meal comes up again, you're going to go Oh, last time that didn't work out. So well. Let me do it a little differently, more or less based on what your result was last time? Yep. That's really the defining tool that you need is experience.

Scott Benner 1:10:48
Experience. And you only get that by doing it. So fortunately, yes,

Craig 1:10:53
but But you know, the closer guests you can get by being educated to how to guess, right, the better it is. Yeah.

Scott Benner 1:10:59
100%. So you found the podcast? Have you listened through like you listen to it, like for management stuff? Do you like people's stories? What do you appreciate about it?

Craig 1:11:10
I like to listen to the episodes where there is a feature that is a teaching moment. You know, I know that my story right here has been a lot of just my experience. Personally, I don't find that that that. That useful? Mean? Entertaining, right. But I never even listened to a podcast before your podcast. So you know, I turned on the radio and listen to music. I never you know, I never listened to a podcast before I understand.

Scott Benner 1:11:42
I'm sorry. I ruined music for you. So

Craig 1:11:46
I still listen to the music to Scotland.

Scott Benner 1:11:50
Thank you so much for doing this man. I really do appreciate it. No,

Craig 1:11:54
thank you for doing it's got you are you're the you know, the linchpin in this education movement. You know, one of the linchpins anyway, in your own way. And all of that is really a huge advantage to diabetics everywhere. And I would only hope that people with other kinds of afflictions have the same resources because it is really important education is really important.

Scott Benner 1:12:21
Yeah, I agree. And I appreciate your words. Thank you so much. Okay, Scott. Yep. Hold on for me for a second. Okay.

Unknown Speaker 1:12:27
Sure.

Scott Benner 1:12:32
A huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGL You see ag o n.com. Forward slash juicebox. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for long term wear get ever since. A huge thank you to one of today's sponsors, ag one drink ag one.com/juice box, you can start your day the same way I do with a delicious drink of ag one. Lots of people with autoimmune seem to have trouble with their thyroid. And that's why I've made the defining thyroid series juicebox podcast.com. Click on defining thyroid the menu to find out more. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1151 Grand Rounds: Jon Oden, M.D.

Jon was diagnosed with type 1 diabetes at 11 years old. Today he is a Pediatric Endocrinologist.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 1151 of the Juicebox Podcast

today I'm going to expand the Grand Rounds series. It's not Jenny and I today today, it's Dr. John Oden and myself talking about type one diabetes care. Up until now it's been Jenny and I talking to doctors about what we think people with type one diabetes need. Today we're going to hear from one. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. How would you like to help with type one diabetes research from wherever you are right now? In fewer than 10 minutes? Go to T one D exchange.org/juicebox. and complete the survey. That's it. You need to be a US resident who has type one diabetes, or is the caregiver of someone with type one. And they're very interested in hearing from caregivers of Boys, boys of color, men, men of color, but everyone is welcome. If you're a US resident, you have type one where you're the caregiver of someone who is T one D exchange.org/juicebox. You'll be helping, it won't take much time. Please consider it.

This episode of The Juicebox Podcast is sponsored by the ever since CGM. And sure all CGM systems use Transcutaneous sensors that are inserted into the skin and lasts seven to 14 days. But the Eversense sensor is inserted completely under the skin lasting six months ever since cgm.com/juice box. This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next one.com/juice box. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox Hello, I'm

Jon Oden, M.D. 2:19
John oden. I am a pediatric endocrinologist in Arkansas. I work mainly at a little rock but go into the Northwest every once in a while. John,

Scott Benner 2:29
why am I talking to you today from where are you at?

Jon Oden, M.D. 2:32
I am currently in a town called Springdale, which is the house of one of our newest pediatric hospitals. For Arkansas Children's. It's our it's Arkansas Children's Northwest. I think our discussion today was born from a couple of my diabetes education people. Roxanna Hutch craft, recommended I reached out to you because, well, I'm an endocrinologist, your podcast is is highlights diabetes quite a bit, which I applaud. I'm an advocate for people with diabetes, and I'm a person who has had diabetes for the past 42 years. And okay, John, how old are you? I am 53 years old. 33.

Scott Benner 3:14
So you diagnosed your 911 11 Oh, damn, you know, I had nine or 11 in my head has a choice. And I don't know why I went with nine. I also don't know why my brain can't figure that out. But that's,

Jon Oden, M.D. 3:23
that's okay. Because I keep thinking I was diagnosed when I was 10. I keep thinking that for some reason. But I was diagnosed in September of, of 81. So I'm sorry, September of 82. So

Scott Benner 3:37
John, you're diagnosed? You're What do you take in regular mph?

Jon Oden, M.D. 3:41
Yeah, two shots a day regular mph? Very strict meals, very strict times exchange diet, if you will. You had to, you know, one slice of bread is a starch. That

Scott Benner 3:53
kind of stuff. Yeah. Now is there in hindsight, other autoimmune in your family? There

Jon Oden, M.D. 3:58
is my mother suffers from thyroid, as does my sister, hypothyroidism. So there is

Scott Benner 4:05
nothing beyond that, though. Celiac? No,

Jon Oden, M.D. 4:09
no. psyllium. But I mean, remember, I mean, my, my, my mother and my sister. You know, they're they're not they weren't born in a time where celiac was a focus. So I can't remember if my doctors ever screened us and I certainly don't know if their endocrinologist screened them. So it's very possible.

Scott Benner 4:26
Can I ask you a strange one that you might not connect? But I asked about because I've been making the podcast for so long. I hear so many people's answers. How about depression, anxiety, or bipolar? Specifically? You mean for me personally, family, like family member even like either side going back anywhere?

Jon Oden, M.D. 4:44
I wouldn't be surprised if there was a touch of depression and anxiety and all of us family members meaning I don't mean to say that in a bad way. They certainly weren't, you know, dark room depressed, you know, they, but you know, every once in a while you could you could probably see the glimmer of some anxiety. My sister and myself. Sure, okay,

Scott Benner 5:02
I just I, over the years and I'm now well over 1100 episodes, the amount of people who will say there's a bipolar I have a bipolar aunt or uncle is kind of overwhelming when you talk about inflammation and, you know, kind of things that we're still learning. Obviously, we're, I think our medical understanding of a lot of things is very young still. So I just like to ask, okay, so you're 11 years old? Just what you do into a day you're eating very specifically, your parents help a lot, or did you get into a rhythm and it was just on you?

Jon Oden, M.D. 5:36
To be honest, it was always on me. And that was not my parents choice. It was mine. From day one. When I was admitted, we were in Houston. So I went to UTMB in Galveston, and from day one nurse walked in, said, Hey, you're gonna start insulin injections. I remember it very clearly, she walked in with this needle that was, you know, six inches long. Not really. They were they were Terumo or BD, you know, big. They were pretty long needles. I took it from her hand. I said, I'm going to do this and ever since then, I can honestly say a nurse has other than vaccinations has never given me a shot.

Scott Benner 6:14
Do you think you wanted to do it? Or did you not want someone else to do it? Oh, that's

Jon Oden, M.D. 6:19
a great question. wasn't afraid of it. So I guess, I guess, you know, it just felt it was on me to take care of it. Okay. And in my practice, you know, you see, you see kids like that. And you know, they're very independent predicts pretty good control. Although, you know, in my instance, it was a lot of obsessive compulsive I want to be controlling things, you know, controlling blood sugar that's part of the reason why my control is so quote unquote good partly why I have as many lows as I do, you know, I don't I don't like to be high. And so part of that is, you know, that obsessive compulsive nature of I want my blood sugar to be x and I'm going to fight to make it x and I want to be the only person that puts a needle in my skin and that's, that's what's gonna happen is

Scott Benner 7:07
that focus that attitude prevailed through your whole life or is that just how you treat diabetes? Or can you also not can I not have the remote control for watching television or something like that? If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use G Bo Capo pen before an emergency situation happens. Learn more about why G vo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit G voc glucagon.com/risk For safety information. That contour next gen blood glucose meter is the meter that we use here. Arden has one with her at all times. I have one downstairs in the kitchen, just in case I want to check my blood sugar. And Arden has them at school. They're everywhere that she is contour next one.com/juicebox test strips. And the meters themselves may be less expensive for you in cash out of your pocket than you're paying currently through your insurance for another meter. You can find out about that and much more at my link contour next one.com/juice box contour makes a number of fantastic inaccurate meters. And their second chance test strips are absolutely my favorite part. What does that mean? If you go to get some blood and maybe you touch it and I don't know stumble with your hand and like slip off and go back. It doesn't impact the quality or accuracy of the test so you can hit the blood not good enough, come back get the rest without impacting the accuracy of the test. That's right, you can touch the blood come back and get the rest and you're gonna get an absolutely accurate test. I think that's important because we all stumble and fumble at times. That's not a good reason to have to waste a test trip and with a contour next gen. You won't have to contour next one.com forward slash juicebox you're gonna get a great reading without having to be perfect. Oh

Jon Oden, M.D. 9:57
yeah, I you know, I am obsessive compulsive about certain things my wife will tell you I have this compulsive nature to buy vintage audio and repair it and she just gets sick and tired of seeing old tape players. And so there are pieces in my life that that Yeah, I think you can see that. But to the most extent, I feel that it's pretty mild. I'm a pretty open person and willing to hear others others thoughts on how things go. Are you using that

Scott Benner 10:27
word clinically? Or just kind of colloquially?

Jon Oden, M.D. 10:31
Obsessive compulsive? Yeah, I would say mostly colloquially, I think it's, it's somewhat clinical. But over the years, I've learned to kind of manage it. So it doesn't really doesn't really frustrate my family. And I here I am the kind of guy that gets up, you know, right before we go to bed and checks the doors three or four times to make sure that they're locked, even though I know I've checked them 100 times.

Scott Benner 10:54
Maybe it is clinical, John, I'm not a doctor.

Jon Oden, M.D. 11:00
Not medically managed, I guess is what I mean.

Scott Benner 11:05
So you grew up this way? How long does the exchange diet idea? Go through your life? Like when did they because if you're an 81, when when did they give you I'm trying to guess what you get? Like Basal insulin and like 88 around then?

Jon Oden, M.D. 11:20
I never started Lantis? No, no, I always was on mph, I started human log in the early 90s. Okay, the honest with you, if my recollection is correct, and I was one of these people that, you know, I kept my diabetes in pretty good control. And we had to drive 45 minutes to an hour, my parents night to UTMB every, I don't remember, I don't think it was every three months. But it could have been up until I graduated high school. And then I started seeing a dolt. And by that time, I had learned how much insulin to give myself based on carbohydrate volume. So I was already doing kind of a meal ratio before doctors or dieticians had talked to me about it.

Scott Benner 12:02
Yeah, that's excellent. So you saw it enough in your own life? You're like, I'm going to make an adjustment here on my own. Yeah. But what was the what was the measurement of success? Like you said, you were in good control. But how did they tell you where you are? Because it was it? I mean, you didn't have a meter right for a while, I would imagine at home.

Jon Oden, M.D. 12:20
Oh, we so we use those old accucheck meters. So we started using those in the mid 80s. And you know, you had to have a big dollop of blood. And you know, it gave you a range of like 80 to 120 or like a roundabout number, you know, so it wasn't, you know, hugely accurate, it took five minutes to get anything, you had to wash it off with sterile saline, that kind of stuff. It was, you know, very technical. But shortly thereafter, we started seeing meters kind of pop up measure of success was always kind of a one see how many low blood sugars did you have? Were you ever in the hospital? And there was a question on the on the questionnaire at UTMB that always struck my parents. And it was does he use he or she use his or her diabetes to get out of, you know, chores or responsibilities?

Scott Benner 13:07
So a one C, amount of lows. Have you been in? DKA? Do you use this as an excuse? Interesting. Okay. And how were your lows? Manageable?

Jon Oden, M.D. 13:19
I think, you know, back then when we were only kind of checking blood sugars with finger poke. And the chemical Kimmy luminescent strips, you know, that gave you a range or the meters that gave you a range or a roundabout number. I think I probably had a couple of lows a week. But in reality, you and I know that was probably not very accurate. You know, we I probably was experiencing lows once or twice a day.

Scott Benner 13:45
So John, tell me what you call low under what? Less than 70? Or 70? Where do you feel it? Like? Where do you feel like you're not yourself?

Jon Oden, M.D. 13:53
Well, with a rapid drop, I can certainly feel it. So when when my CGM shows me with an arrow down or two arrows down, I'm going for like, I'm going to be very conservative, you know, 200 to, you know, to 90 pretty quickly, I'll feel it, you'll feel a little wobbly. You feel a little, you know, shaky, sweaty. But if it if it's a slow decline, I would say I'd probably start feeling less than 6060.

Scott Benner 14:19
Where can you not help yourself anymore? Do you know?

Jon Oden, M.D. 14:23
Oh, goodness, I've been in a teens and still been able to take care of myself. But then I've had some some pretty significant drops overnight that my wife had had to help me and when we measured it was in the 40s. Okay.

Scott Benner 14:35
Does that happen to you now as much that there's the technology's better, like Does that still happen? Oh, no.

No,

Jon Oden, M.D. 14:45
not that it hasn't happened in years. Yeah. You know, we certainly my onesies have been in the lower 60s upper fives for a while. So Right. Yeah. I would say that it's it's very, very rare.

Scott Benner 14:59
Mm hmm. Now it's just that back then. Right there was, I mean, it's just there wasn't as much precision you didn't have any kind of the main the monitoring was, you know, right catches catch can.

Jon Oden, M.D. 15:10
But I've never I never had a severe low I will tell you I'll be honest, I never had a severe low while I was living with my parents never okay, in one time when I did have a low that required glucagon that my wife had to give me. My mom was actually staying with us. And she did not know how to use the glucagon. About that years later. Yeah, years later. And we found that the times that I had severe lows were always associated with like yard work or moving. So if it was hot outside, and I was really active, and got dehydrated, that tend to predict a significant low and so you know, my wife and I are always like, okay, so you chop down a tree today or whatever. You're gonna go, you're getting loads and loads tonight. So tonight, you're going to eat a

Scott Benner 15:57
lot. What's interesting is what age did that that one low? You're talking about where your mom was visiting where you'd like in your early 20s. And you just gotten married or something? Or?

Jon Oden, M.D. 16:07
I was in my fellowship. So I'm guessing I was in my late 20s. Okay.

Scott Benner 16:13
That's interesting. And what was your management like back then? for that?

Jon Oden, M.D. 16:17
I was on a pump. So I started pumps around the same time. If memory serves, I started my pump and my daughter was one. She's 23 now. So it was around the same time.

Scott Benner 16:29
Yeah. Okay. Do you use an algorithm now?

Jon Oden, M.D. 16:32
I'm on the OP five. Okay, so I used to use tandem, but I switched the OP five because I can I can put it in different places on my my torso and my arms. You like

Scott Benner 16:43
the form factor of the Omni pod? I do. Yeah. And up for that use Control IQ or just the tandem Basal

Jon Oden, M.D. 16:51
control IQ? Yeah, okay. I use Basal IQ for a brief period of time, then I switched to control IQ, I find both platforms are just are phenomenal. Yeah,

Scott Benner 16:59
I agree. Also, it's interesting how quickly they went from baseline IQ to control IQ. They, they almost like, released that first thing like, look what we got, like, approved. And then before I feel like they, they didn't expect the next one to come back quickly, because it was really quickly after that. Yeah, it was it was but the tubing and the form factor meant enough to you to move on from something you enjoyed

Jon Oden, M.D. 17:22
the tubing not so much. You get used to the tubing, I just Yeah, I think it was the fact that the pump sites for me, I couldn't put them on my legs, because I'm a runner. And I couldn't discipline myself enough to carefully remove my shirt, so I don't rip my pumps out off of my arm. I tried it a couple of times. So I developed a pretty significant amount of like hypertrophy around my around my, the front of my torso. So I was like, hey, it's time for a change. So you're

Scott Benner 17:51
overusing your only site that you that you were willing to use. Yeah. I also I don't understand when people say I'm a runner, but that's a different podcast. So you go out and run somewhere on purpose. And nothing's chasing you.

Jon Oden, M.D. 18:03
No, nothing's chasing me. No, no, but I can tell you that I am a an amateur runner. I'm not I'm not a person that runs every day. But I am training to do the half marathon this year in Little Rock, which is

Scott Benner 18:16
all five of your toes pointing forwards still.

Jon Oden, M.D. 18:19
Oh, they are lost. Last time I did it. I lost the the big toe nails, which was a little gross for my kids. Yeah,

Scott Benner 18:26
that's gross for me, John, I don't know you and I can't say it. So it's fantastic. When did when in your life do you say I'm going to do you think you would have been a doctor with or without diabetes? This episode of The Juicebox Podcast is sponsored by ever since and ever since is the implantable CGM that last six months ever since cgm.com/juice. Box. Have you ever been running out the door and knocked your CGM off or had somewhere to be and realize that your adhesive was about to fall off? That won't happen with ever since ever since won't get sweaty and slide off, it won't bang into a door jamb and it lasts six months, not just a couple of days or a week. The ever since CGM has a silicone based adhesive forge transmitter, which you change every day. So it's not one of those super sticky things. It's designed to stay on your forever and ever, even though we know they don't work sometimes. But that's not the point. Because it's not that kind of adhesive. You shouldn't see any skin irritations so if you've had skin irritations with other products, maybe you should try ever since unique, implantable and accurate so if you're tired of dealing with things falling off or being too sticky or not sticky enough or not staying on for the life of the sensor, you probably want to check out ever since ever since cgm.com/juicebox Will links in the show notes links at juicebox podcast.com.

Jon Oden, M.D. 20:04
Probably not, I will be honest I, before I was I developed diabetes I am mistake take a step back, my family comes from my mom's side, a lot of people in the Navy and I have a lot of respect for our military. In this country, right? I had planned to become a naval aviator, I wanted to fly a fourteens back in the day, but then after diagnosis, my uncle and I had a conversation about the possibility of a person with diabetes joining the Navy and in any way, shape or form. And he just told me very, very honestly, and frankly, that No, that wouldn't be possible. And that just broke my heart. So thinking back on the days when I was, you know, with Dr. Travis and Dr. Bro hard at UTMB, which is phenomenal group, great doctors. I just liked what they did. And it's it kind of formed an idea in my head to do that. And that's what I, you know, again, with my obsessive compulsive nature, I just kind of went after it.

Scott Benner 21:02
And when you say that they're good doctors, what in your mind, like with the experience you have now in hindsight, what made them good physicians for you.

Jon Oden, M.D. 21:14
They were brilliant. In my eyes, they were brilliant. They knew exactly what they were talking about. So they had this force when they walked into a room, which I don't know anymore, because I'm one of them. So another doctor walking into a room coming in with this knowledge about what's going on. And what's going to be the treatment strategy is just commonplace for me. But back then there was just this, this, you know, this presence in a room and Dr. Travis walked in. I mean, Luther Travis was a big name and diabetes, and they were they were fortunate to have that you haven't met UTMB and Ben, bro hard. Likewise, if memory serves nephrologist, both of those guys went on to write a book about diabetes not too long after I have a copy of it in my office. It's it's in the 80s I think so it's relatively old. But the other thing was that they were just very kind, very direct. They my mom was very anxious at the time, of course, her son was diagnosed with diabetes, but I just remember these guys has been very patient and kind of walking her through the process and walking me through the process. And

Scott Benner 22:18
I'm going to tell you why I'm asking this in a second. But kind honest and smart is what I heard overall, and that they had a there was a lot about them that they knew what they were doing. Yeah. Okay. And then when they walk in, you put yourself in their hands because of these these ideas, and then they know what they're talking about. They're able to lead you. Right. Okay, so are we talking about leadership? You know, yeah, just, yeah, I'll take let me tell you why I'm asking because I know somebody put you on to being on the podcast, so you might not listen to it. I've been doing a series this year, I've been doing two kinds of concurrently. One I'm having health care providers on and other people around medicine. So anywhere from like a human resources professional, up to a I've had CDs, ER nurses, I've got a doctor on the docket coming up, but these people are coming on. And they're speaking anonymously, we're actually even changing their voices. And they, they're dishing about their jobs. I've heard anywhere from I wouldn't go to the ER that I work at, if I had trouble with my diabetes, to I've been directed over the last 23 years to fire so many people because of their medical problems, you wouldn't believe it. Like like that kind of like so that kind of honesty, right. And at the same time, I'm doing another series with a CDE. I know I don't know if you're very particular about the C D. C 's thing now. But her name is Jenny and Jenny works for Integrated diabetes, which is a company where you can go and they'll manage you remotely and help you. She's type one for like 35 years, she a very similar story to yours, like, you know, grew up on regular mph was eaten on a schedule. She's like, we ate at the exact same time every day, like that kind of stuff. And she's just kind of brilliant about how she talks about diabetes. And she and I are doing a series where we're basically we call it grand rounds. And we went out to the audience of the podcast, which is significant. And ask them what do you wish your doctors would have said to you? What do you wish they would understand, you know, what are you looking for in your interactions? Where do they fall short? And so we're kind of kind of doing this series where we're talking directly to doctors and saying, look, look, this is what people need. And I've just been very involved in it in the last like three or four months now. Hearing from physicians hearing from medical people that my doc I work with doctors that overwhelmingly don't know what they're talking about when it comes to diabetes, or the healthcare system isn't even set up to help people with diabetes. Like you'll come into the emergency room and say like I'm having an issue with my heart, but then you look at them and their type two, for example, and they have, you know, significant gaps and how they care for themselves but nobody even explained to them what they're doing wrong. And it's and sort of just trying to parse through the whole thing. So just to hear a person like yourself, who has good control over a lifetime, is an endocrinologist and thinks back on their doctors as being good. I was really interested because I, there's this phenomenon that happens when people come on, and I'll say, What do you think your doctor and like all my doctors, fantastic. And then through the course of the conversation, I learned that they're a one sees in the high sevens, it has been for 10 years, and I'll stop and ask them, Why do you tell me your doctors, fantastic if you're a one, see 7.9. And then they go on to say, Oh, they're lovely, very nice people, you know, and you tend to realize that the personal partner, they liked the person, but the person is not really doing a good job for them. But when they think about it, they think they're doing a good job, because they like them. Does that all make sense? It does.

Jon Oden, M.D. 25:53
It brings up a lot of really sensitive topics, right? I mean, you know, who's responsible for diabetes control in the end, right? It's your doctor, or is it you, likewise, the workforce today is much different than it was in the 80s, there's a lot of meat on that bone that I think you you're gonna, you're gonna pull off a lot of it talking to the right people, I applaud you that. The first one that you described as a hacker, you were probably gonna find a lot of interesting information, depending upon which hospitals you get people from. And then the second one is fantastic. I think asking people what they wish, a doctor would say is, is information that is not taught in medical schools. And I learned after I graduated from fellowship years after a basic saying that that really helps families out. And that's just to look at them in the eye and say this, this wasn't your fault. And that's just one little piece of a conversation that probably needs to be a lot longer than it is now. So I That's great. Well,

Scott Benner 26:54
I think that what I'm coming up with is that there's some mixture of humanity communication and knowledge that the doctor has to have. Yeah, sometimes. I'm not trying to be funny, but sometimes what makes you a good doctor does not lead you to be a terrific communicator. And that I'm kind of seeing but but I also at the end of the day, and at the end of it, that's not to blame anybody, right? Like it's a, it's, it would be like saying, you know, I mean, I'm gonna build a building, I want a good engineer, this is not the same guy would ask to put on a community play. Right? Like, like, okay, right, traditionally, like that an engineers mindset and personality might not be, you know, right. For other

Jon Oden, M.D. 27:36
things. You don't have to be a renaissance man to be a good, a good doctor million

Scott Benner 27:40
percent, right? And, but at the same time, when I'm hearing these conversations, I came up with the exact same thing that you said, which is, at what point, if I'm a physician? Can I beat my head against that brick wall? telling somebody? All the good information I have, and feeling like they're going to just ignore me anyway? And there are eight and whose responsibility is it? And I think the answer is it's everyone's responsibility. If I had to push it to one side, I have to push it a little more towards the doctor, because I am making an assumption that they at least have a level of intellect that should allow them to get through this problem. I don't know everybody who has diabetes has that. Yeah, yeah. The the capacity. And that's not their fault, right. So you, and at what point, though, does a doctor burnout and just think, I'm not gonna say to this person, it's not even gonna, it's not gonna matter. Like, what happens when they get to that point in their career when, you know, they mean, they start having lower expectations, I guess, and that stops them that

Jon Oden, M.D. 28:43
unfortunately, that's true. And that's not just the doctors kind of mindset, or it's not always just burnout, but it's the way we kind of Metra size, or measure satisfaction in clinic. I mean, we can't look at a family who is not doing what we asked them to do, what is standard of care, for example, and tell them, hey, if you don't do what we asked you to do, send us blood sugar logs, take your injections every day exercise, etc, etc. We're gonna have to kind of take this to the next level and talk to, you know, CPS or DHS, or whoever it is. Because satisfaction for both parties really goes down. You have to build this ability. And I know very few doctors who can do this. And I wish they would give some sort of masterclass on it because I am not one of these doctors, but there are doctors out there who can have conversations that are very direct, and kind, but forceful. Hmm.

Scott Benner 29:42
So yeah, come in from that. That's the one thing you were describing about your doctors that I didn't want to put a label on it first, but they cast a big they cast a big shadow, like they're smart and bright, and we know that they do a good job so that when they come in the room, you kind of step back a little bit and go Oh, there's the guy Like I heard stories, you know what I mean? The guy,

Jon Oden, M.D. 30:01
there's the guy that's gonna tell me how to take care of myself and I want to be in good control.

Scott Benner 30:05
Yeah. And I believe you healthy. Well, what happens? Here's the thing that happens constantly. So I'm in a weird position John, where I have no medical training at all. I have a daughter who has type one diabetes, she was diagnosed when she was two, I was a stay at home dad, she's 19. Now, I started writing a blog about it the year after she was diagnosed, but in honesty was just trying to raise money for JDRF. Right, and then became, I was bad at diabetes like Jen genuinely. And my daughters, they once he was named to the nines, but I went to a very good or she went to a very, very good what you would consider a very good Children's Hospital for for endocrinology. But it didn't matter, right. Like they tell me what to do, I'd go home and do it, it didn't matter. I just didn't have enough knowledge. I didn't have enough tools. And I build them up along the way, as you know, is a very common story. But because I was writing this blog, I started to like, share what was working for me. And then I started seeing it helping other people, right. And I was like, Oh, wow, my experience transferred to you, you end up having the same outcome I have. That's, that's pretty interesting. And, and then I did that for years, 2007, up to 2015. And it was a really, I'm just saying this, for context was a very popular blog, like it had millions and millions of clicks. And then one day, blogging got passe, I guess, people stopped reading. And I pivoted to a podcast in 2015, January. And it was the, I think, the first diabetes podcast that existed. And I started sharing more like, this is what we do. This is how I feel, blah, blah, blah. And now, John, like, the podcast has a collective total of 16 million downloads, or it's in the top 100 chart of like, 48 different countries. And I have a Facebook, private Facebook group with 46,000 people in it, they're almost all active. And if you go in there, and just if you were to go in there right now and say, Hey, my name is John, I'm an endocrinologist. Tell me what about this podcast helps you, you will probably get responses back for the next five days. And, and so the thing, the things that I figured out about diabetes are transferable, and I'm able to share them without knowing you. So without knowing who you are, or knowing any of your details, because it's a one way communication medium. I'm getting people back like maybe once he came down three points, I'm in the sevens now study, I'm in the sixes, I'm in the fives, I know how to use this. I'm very comfortable. Like, all this stuff happens. When I look back, I keep thinking like, Why can't a doctor do that? For people? Like why they come to me because they have no satisfaction through their health care? Like if they didn't, there'd be no reason to go look for help. Right? They, they'd be okay. Yeah, and the only thing I can come up with, is it's the, it's the frequency, it's so that we can keep connecting that you can have bigger conversations, and you can pick ideas out little bits at a time. Anyway, my thought is, and I say this whenever I can, I think endocrinologist should go to like, group appointments. And so instead of someone coming in for 15 minutes, you should come in and sit in a room for a couple of hours where different physicians will come in and speak to their ideas and, and take questions so that other people can hear other people's concerns, and go back and forth. I think it's the only way for that model to like help people in mass. And I don't know what you think about that. I was wondering, like, I know, they like taking out HIPAA things and you know, billing billing, all the problems that would get in the way that do you think that would work, though?

Jon Oden, M.D. 33:48
I mean, you're talking about kind of mass education on a frequent on a kind of more frequent level. Right. I mean, that's, that's no, I think that would work if you did take away issues with billing issues with productivity productivity measures, for physicians, because hey, we've got you know, X number of physicians in the state and they have to see one in every 600 Chuck kids three times a year that kind of process that you're you're describing although check yes, I think that would that would do a lot for kids would take a kind of Herculean effort to pull off but I will I will add a little bit a little bit of a variable in your in your calculus for please how how things kind of move at least in my in my opinion, and part of that is transference of blame on in some of these patients eyes, I've had families that you know that after years of seeing me and getting to know me and building a pretty good rapport I you know, I have to say I love all the kids that I see Yeah, I look forward to seeing them. I think they're wonderful. I think their families are all wonderful in all ways, shapes and forms all forms of, of control, I feel for them, I empathize with them. But a few of them have come to me and said, You know, when we were first diagnosed, I blamed you for the diagnosis, because you were in the room, but it happened. And I think that that baggage carries a lot of restrictive emotional absorption, if that, if that makes sense. Meaning, you know, I can tell them all I want to tell them, I can have a 50 minute long conversation about pathophysiology and Treatment and prognosis, and hey, kids with diabetes do great. If they have good control, but in that mindset, for however long it, it lasts, because it doesn't last forever. I don't think in any families, I think they they come to terms with it after a while. But I think the absorption of information with that with that mindset of I am in a, in a medical community, with a physician that told me my child had diabetes and X percentage of them hold that physician responsible.

Scott Benner 36:12
Yeah, I had this experience when my son was younger, like very smelly had a blockage in his ear, like like a wax buildup, and I took him to the pediatrician who I happen to know. And he sent a nurse in with like a lavage kit. And then he left the room very specifically. And he came back and I asked him afterwards, like privately as like, Why did you run out? And he goes, I don't want him correlating his experience with me. Yeah. And I was like, Oh, no kidding goes, yeah, let them hate the nurse. And I was like, Okay.

Jon Oden, M.D. 36:45
I mean, that's, yeah, we have we have families that, you know, they'll come in with our kids. And you know, they'll say, just trying to be funny, mom and dad will say something like, if you don't behave, Doctor is gonna give you a shot. And I'm like, No, I'm not going to give them a shot. Please don't tell him well make me

Scott Benner 36:57
the bad guy. Right. Right. Yeah, like but, but that is what so, you know, here's the little like, not so dirty secret about the Grand Rounds series that I'm making is, as much as we are talking at doctors. I'm also that's not the only people who are going to be listening. So I am, I'm trying to simultaneously say to a physician, here's what people expect from you. But I'm trying to say to the patients, you know, here's who people are like, they're doctors, they're just people. And you know, here's some of the problems that they have. And you know, some of their hurdles, you have to understand that everybody's got to meet halfway. And you maybe you're the problem, and you think it's the doctor or sometimes, you know, John, I will have people listened to I have a series called diabetes pro tip. It's like 25 episodes, I guarantee you, if you listen to it, you're able to see you'll be in the low sixes. If you if you even reasonably understand what you listen to, if you really understand it, you'll get a high fives I handled whatever you're up to. So but but I'll have people tell me, I listen to the Pro Tip series. I got my a one C down, my variability is better, fewer lows, this whole thing. I go to the doctor, and the doctor says, There's no way you got this a one C without a bunch of lows. And then they Yeah, and then people like No, I didn't but but listen to the chain of events, then John, then they go. No, I listen to a podcast. And then the doctors probably like Oh, okay. And you mean, right? So it gets this missive. And they will tell them bring your A one C up. This is dangerous because they believe so specifically that they must be having a low. So there are physicians out there in maths, who don't even think that a low six is achievable. And if you have one, you're offsetting high blood sugars with very low blood sugars. Yeah,

Jon Oden, M.D. 38:47
yeah. No, I've met those guys. And we had it Dallas. I think we had one of our fellows had a conversation with a doctor out in the boonies somewhere who didn't believe the DCCT. And so his goal for the patients he was seeing was not improvement in a onesie. So I absolutely believe you that there are people out there that say you can safely achieve those kinds of numbers Despite improvements in technology

Scott Benner 39:15
significant. Yeah. Here's some other things that happen all the time. I had a low it. I don't know, two in the morning, or one in the morning, right? And the doctor will tell you, Oh, well then turn your Basal down at like, you know, midnight. They never asked them what they had for dinner, what they ate what the Bolus was three or four hours before, then they make this deficit and in Basal, which then of course creates a high later in the morning. And then then then the next time you come back like hey, I'm getting high at 5am and they they keep messing with it but they don't seem to understand how insulin works. Yeah, you know what I mean? Like that thing you figured out when you were a kid like you You looked and said this amount of carbs needs more insulin I can tell And but it happens so frequently, that I'm going to tell you that the whole basis of the Pro Tip series is just, it's timing and amount. It's understanding how insulin works. And under. That's it. Like, that's the whole thing. Like if if you made me stand up in front of a world full of people using insulin, and said, Scott, you have 30 seconds to fix these people's lives, I'd say it's timing and amount. It's using the right amount of insulin at the right time. I, you know, I don't I don't have time to give you the rest of the details. But that's the entirety of it right there. Go figure that out. Yeah, yeah. But then you're absolutely right. Listen, it's also not brain surgery. John, I was just the first one willing to say it out loud and have my voice recorded that was in, you know, in this kind of medium. If you listen to other diabetes content, they will always artfully speak around giving what they think might be medical advice, I'm don't think I'm not giving medical advice on telling people what I do, they can do whatever they want. And I have a good disclaimer, it's rock solid, John. So don't worry about I just think it's wrong to know this stuff about managing diabetes and not share it with people. But I'm fascinated and dumbfounded by a physician who can't figure out how to adjust a situation for a low blood sugar like, how would you not that my first question would be, what did you eat for dinner? Does it have fat in it? Was it? Did it have protein in it? Did you, you know, what would you eat today? How was your activity? Like just turn your Basal down randomly at midnight, for one low? You saw at 1am? Like, you know, it's just that stuff? That's baffling.

Jon Oden, M.D. 41:32
I think what you'll find, as partly an answer is that the medical community now is struggling. You have primary care physicians who really aren't trained in diabetes, but are in some ways forced to see patients with diabetes, because the volume of endocrinologist is dwindling. Well, there's not that many of us left in this world. And there's many reasons for that, that will take hours to discuss, but I understand your argument. And I think you're right, it's It's baffling to think about, but realize that some of these guys and gals are are having to see, you know, 30 kids in an afternoon and one of them happens to be a person with diabetes. And you know, hey, I have a low in the middle of the night, and they're going to be first thing off the top of their head, the easiest answer is going to be exactly what you described. Yeah. And the answer to make all of that better, apart from improving education, which I wholeheartedly support and work towards, in fact, we're wanting to do kind of a endocrinology for pediatrics conference in Arkansas, which we're kind of crossing our fingers we get funding for but the other other issue would be to explore a way to make sure that either primary care physicians are trained in diabetes, or keep bolster the number of endocrinologist that are being trained, which both of which are going to are, are massive undertakings, would it

Scott Benner 42:57
maybe not be pertinent to to create a new specialty? Like, what why do we ask endocrinologist to know about like, this wide range and diabetes, like there's enough people with diabetes in the world now, like, couldn't a, you know, a specific diabetes endocrinologist be like a lucrative like career for someone? Well, there

Jon Oden, M.D. 43:19
has been discussions about changing the fellowship from a three year to a two year program. And that would be kind of a motion towards that. But think about it this way. We graduated maybe 50 or 60 fellows, every year for the past couple of years, there are hundreds and hundreds of open positions, and more and more opening every month, around the country around the world. Yeah, trying to, you know, kind of find that needle in a haystack person like me, or some of my colleagues that want to do specifically diabetes, which is a chronic disease that is difficult to manage and has social barriers to it, financial barriers to it. It would be hard. Without, you know, I don't I don't mean to say financially incentivizing, but some sort of,

Scott Benner 44:13
kind of It's a hard job. Yeah, you know, I guess John, where I get tripped up is some like 30 years ago, I graduated from high school at the bottom of my class and went to a job at a sheetmetal shop the next morning. And if you ask the right person, you want to come to me to learn about diabetes. So I always feel like if I can do it, like anybody could, like I just I know my communicate. Listen, I understand that my communication style works for a lot of people. I'm sure there are plenty of people who doesn't work for too. That's not the, you know, not up for debate. As far as I'm concerned. I'm sure there are plenty of people that hate me. But like, I know how to talk to people about diabetes. I know how to explain it in a very kind of easily digestible way. And I think that if I can do it, like Jesus, a doctor could do it and been doing it For 16 years, I'm also have a ton of practice. And that is the thing that Yeah, see, I appreciate you saying that because that's even something that I would lose sight of, because I wrote that blog with no, like, it didn't make money. I wasn't trying to make money with it. I, my, my entire focus was to be to share a personal thing with you, John, as I wrote that blog thinking, if I educate enough people about what this is, then one day, if my daughter's out in the world, and she falls over in public, maybe somebody will understand what's happening to her. Like, I really that's what I used to think when she was two years old. And it stemmed from just a newspaper article about a guy that got kicked off the train on the Northeast Corridor, I think, between New York and Washington somewhere, he was on a train, he was strong, they kicked him off at a at a stop. Six o'clock in the morning, when the commuters were coming in, he's laying literally in a stone driveway, and everybody's walking past him and mocking him for being drunk. But this one person who grew up with a sibling with type one diabetes, recognized what was happening with them and stopped and save the guy. Right, because he really had a low blood sugar. And I used to think, maybe odd that crazily, I used to think if I could reach enough people and tell them about diabetes. If my daughter falls over like that somebody might help her one day. And that's a really Pollyanna idea that I had in the beginning, obviously, but I also wasn't trying to make money at it. And I and I was able to have experiences and build on them. And I had feedback coming in from people who were reading so I knew what worked and what didn't work. I could write something and see like, Oh, it doesn't work to speak to people in this tone. It doesn't work to be too specific, too technical. You need to be more you know, it needs to be easier to digest. I had a lot of time to develop this. You should

Jon Oden, M.D. 46:46
well I don't know if masterclass is anything that you should do a masterclass on educating people with diabetes.

Scott Benner 46:51
John, twice a year, a hospital will contact me and ask me to come out and speak to the staff. And then eventually it gets up the ladder far enough at the hospital, somebody puts the kibosh on it never happens. Well, because because I'm not a doctor. Yeah, yeah. But I'll tell you this, John, I did a talk in Austin. This year, or just recently, a couple months ago, it JDRF said, you know, we do these little like, coffee talks, like, would you fly down here and talk to like, there's like, 40 people in our, in our thing, and it's like, if I come down there, it's not gonna be 40 people, like we sold, think every ticket they could for the space, they found, like 350 people showed up. And we had to hold it in the in the Texas State Capitol, which is really cool. She says, so you know, how long do you want this to be an hour and a half? And I was like, No, all day. Oh, well, she goes, people won't sit as like they'll sit. And so we settled finally on 10am to 4am 4pm. So we came in, we did a two hour Jenny came with me. We did this two hour just kind of like chat. It didn't have like, I promised you that Jenny and I talked to each other before we went on stage and said, What do you think we should talk about? And then we went up there started, we talked for two hours, they went to lunch, they came back at one o'clock. We did q&a for three hours. Nobody left. And that evening, I got an email from a woman that said, hey, you know, we did a lot of traveling after we left there. My daughter's blood sugar's normally would have been troublesome in a car, you know, crappy food on the highway, that kind of stuff. And she said, but they weren't they were very stable and and where we wanted them to be. But I don't know why. And I was like, Yeah, you know why? Because we sat around. And we talked about these little like, micro ideas about how to manage and, you know, let's Pre-Bolus And, you know, let's, you know, if you see a high blood sugar, let's knock it back down again, don't look at it. Like, I promise you, there was no slide show. I didn't give any bulleted points. We just had a conversation. And then she left it had a better outcome. And I think that I can I know how to do that. That's the maybe the only thing in the world I'm good at. Chuck, I take your point, that I don't know how a doctor would be expected to accomplish that? Well,

Jon Oden, M.D. 49:06
I think it goes back to my idea that, you know, in some ways, a doctor is kind of looked at in a certain way. And the educators looked at it a different way. And I don't know if there's ever a mix between the two where you can kind of separate it where so Dr. Odin is going to give a lecture on how to manage your blood sugars, and it would it would come off as you know, kind of trite and, and unscientific. Whereas a person like you with a vast amount of experience now and knowledge can give just basic tips and comfortable tips on how to do things in the real world. And that's I think that's a that's a huge bonus for our community. I mean, I think that's great that you do that. The

Scott Benner 49:50
success of the podcast tells me that it works, right because you know, doesn't matter if you have a little kid or a teenager or you're an adult, like I get as many notes from people are like, I've had diabetes for 25 years. Why didn't nobody ever told me this? You know, as I as I do from newly diagnosed people, I think it just works, you know, and this interesting thing that I've been toying with lately, it's nowhere near ready for primetime. But we now have so many conversations, that the way AI works is I've been loading the more management heavy conversations into AI and learning, you can ask it almost anything about diabetes, and it knows the answer. Does

Jon Oden, M.D. 50:32
it really, I mean, so you created that? Or is that just something that's I'm like, I'm

Scott Benner 50:37
using a service, I'm uploading literally the audio from my episodes. And like down to like we have, we have episodes about like how to set your Basal insulin, like the math of your Basal insulin, right. And it's never late. It's just a conversation where we mentioned the math here and there and everything. But you can ask, you can have aI ask that audio, basically, that transcript, I weigh this much. I'm a reasonably active adult, where should I start with my Basal insulin, and they brings back the right range?

Jon Oden, M.D. 51:06
It's, it's, it's creepy and cool. At the same time.

Scott Benner 51:09
Yeah. So I, my my goal is I'm nowhere near done making the podcast but my goal is, the last thing I'd like to leave for people with diabetes is a website where they can just go ask questions about diabetes. Yeah, that's my, that's my end goal for when I'm finished. But for right now, the job is very repetitive. Like, because 150 new people come into my Facebook group every three and a half to four days. And so, you know, you're always kind of saying, you know, you pointed them to the right episodes to get their answers from, and that's also great, too, because they can learn on their own time. They don't have to sit in front of a physician and feel, like judged or like, dumb, which, um, I've, you know, I felt that way, sitting in front of doctors before. So yeah, there's a lot about why it works. Yeah, that's pretty cool. Did I think the truth is, I was talking to somebody about this the other day, they said, every once in awhile, you'll run into somebody who's like, pissed that, like, I don't have diabetes, if that makes sense. I don't know if that would bother you or not, but and I always tell them the same thing. Like, I think I'm able to be like kind of dispassionate about it. Like, I don't have it, right. Like i When my daughter was getting low, I didn't feel low. I just saw a problem that needed to be handled. And so the way I would come up on fixing that problem might be different than the way you would think to if your blood sugar was 50. Yeah. And you know what I mean, and I was motivated, by my, I mean, I want to give my daughter a long life like to be candid. Like I don't I want to die before my kids. Like, that's really like, what most of my focus is. And you know what I mean, I don't want to be a 70 year old guy looking at my daughter, and she's sick. Yeah, yeah, no, I would,

Jon Oden, M.D. 52:45
I would, I would tell you, you do have a form of diabetes. My friend, family members who have you know, my wife has been with me for 34 years. And she has a form of diabetes. Yes, she does. She doesn't have to take insulin. But she does have to worry about blood sugars and exercise and routine and pump site changes. And yeah, she has to do that.

Scott Benner 53:08
It Oh, no, I don't this, I don't discount it. And I appreciate that. I just once in a while online, I'll get some, I'll get from people who are like, I don't know, one person said recently, how much it bothers them that the most popular diabetes podcast in the world is run by a person that doesn't have diabetes?

Jon Oden, M.D. 53:24
Yeah, I don't I don't subscribe to that. I think anybody who has a family member that they love and care for with diabetes has a form of diabetes, it's not path. You know, it's not necessarily affecting their their metabolism, but it's certainly affecting their lives.

Scott Benner 53:40
It's a very thoughtful way to consider it. I appreciate that. So I think I want to make sure I heard right from you that there's a system set up and you said Herculean, at one point, like to sit again, anything really changed is probably unrealistic. So what are we waiting for, for people with diabetes are we waiting for? I mean, eventually is like going to a doctor going to be online? Is it going to be are you going to go to a portal and tell it what's wrong? And it's going to give you like five ideas of what it might be and then put you on a call with a doctor and they'll chat through with you like, do you think it's all going to move in that direction?

Jon Oden, M.D. 54:14
I certainly hope not. I think there is a there is a proximity and physicality to to being a doctor. It's I've done telemedicine before, and I think it has its place, not a huge fan of the experience for my patients or for me, as a physician. I like to see people and kind of have a really good conversation before I make any decisions, or recommendations, I guess I should say. So I think in some in some futuristic view of medicine, there is going to have to be somewhat of a change. I think the pendulum changes though from time to time. So now we're more focused on primary care because there's not enough primary care out there and as our numbers dwindle, there is going to be a more focus on subspecialty He's like endocrinology, pediatric endocrinology, which is what what I do. But in the end, we are going to have to rely a lot on technology and AI, as you mentioned, and you know, all the all the things that we can bring to focus to make sure that our kids are safe and happy, live long lives in our healthy

Scott Benner 55:19
town. Are there? Are there fewer doctors or more people?

Jon Oden, M.D. 55:24
Yeah. Okay. I think I think both is very true. And I can tell you, there are fewer and fewer endocrinologist in my, in the past four or five years or so I know, five or six of my close colleagues that have either retired or quit, or passed away. And I can tell you, the people that mentored me when I was coming up in endocrinology, most of them if not all of them, have retired or passed away. But there were a couple of guys in San Francisco that I just idolized. And there was one in North Carolina that I idolized. And they are two of them are gone. And one of them has retired, and the other one

Scott Benner 56:05
retired, so it's are fewer people becoming doctors. You know, I

Jon Oden, M.D. 56:09
don't know that I can't answer that intelligently. I get a sense that we are struggling to fill seats in medical schools. But I can tell you with almost certainty that we are struggling to fill positions in fellowships. And that is going to affect the way that that diabetes and other sub specialties approach their patient, just

Scott Benner 56:33
applications, the medical school in 2020 to 23, numbered 55,001 88 11.6%, fewer than in 2021 2022. But 4% More than in 2020 to 2021. That can be COVID, though, right? A total of 22,007 12 students enrolled in medical school in 2022 23. Three, about the same as in 2020. Listen, my, my wife wanted to be a physician coming out of college and she had like financial trouble, which just didn't allow her to make a lot of applications. Oh, yeah, border fence is really expensive. She had good MCAT it's like great undergrad like she, she would have been a good doctor. And as she was lamenting that, in the first couple years where she was working in industry, a friend of ours who's a physician said, you know, listen, you're probably going to do better than I do. And you're not going to have to pay all these, like insurance problems. And like all this other stuff, he's like, don't worry about it. Like he actually was telling her like, don't be a doctor. That's doctors telling people don't be doctors. Because of the the headaches that come along with it. Oh, yeah. Yeah. So I mean, I see the slide, the bigger picture is, once you get somebody to be a doctor, they are who they are. And they may or may not be great communicators. I know everybody thinks smart. Right? But not every doctor is brilliant, like, you know, so you're looking for kind on a smart, you know, can be able to communicate, if you're lucky enough to get those things. What if you're then the impediment as the patient? What if you're not, you know, paying attention motivated, etc. There's a lot of a lot of different tripping points through the process.

Jon Oden, M.D. 58:14
To that point, every doctor has a bad day. Every doctor has multiple bad days such a good point. Yeah, you're on call the week before. It's Monday, you're you've got a full clinic and you're just tired. You know, sometimes you don't put your best foot forward. And, you know, with the way that we're measuring satisfaction and the way we're measuring productivity, it weighs on you all the reports that we get all the nudges that we get from people that are above us it, it does it weighs on you. It's a stress, and it does, as you mentioned before it contributes to burnout. Yeah,

Scott Benner 58:52
I use a boutique and Oh, for my daughter. And you know, look, we're lucky our insurance covers that after the fact really well. But I have the ability to text or email a doctor, and she still has trouble keeping up. And she has a limited, you know, practice. She doesn't take everybody actually I don't think she's taken new patients in the years. And still, it's hard. as much of a personal relationship as I feel like we have with her. I still recognize that every time we see or speak to her the first five minutes is you reminding her who you are and what your situation is, because there's no way for her to keep all that in her head like she'll, she'll be like, Oh, I remember all that kind of stuff. But I actually think that's a problem people. Like I see one doctor, the doctor sees hundreds of patients. But when I go to see them, I feel like I'm having such a personal interaction that I just expect that they remember everything that's been said between us. And that's not nearly the case either. In the end, a lot of these conversations, whether they're the cold wind, which is what I'm calling the anonymous conversations or these grand rounds or anything at the end, what I come down to is like this whole process it See human limitation issue on both sides? Yeah, yeah. And that's not a thing you're going to fix or change. No,

Jon Oden, M.D. 1:00:06
yeah. Not not completely and not in the short term now. Right.

Scott Benner 1:00:10
So the answer is what you hear people say all the time, you have to advocate for yourself and take your care into your own hands to some degree. Yeah, yeah, I agree. It's pretty, right. Yeah. Well, I guess we keep saying that out loud. Long enough. People will listen. But you know, I don't know. I can't reach everybody. John, I'm trying. Well, I think

Jon Oden, M.D. 1:00:29
you've done a good job. I think the the podcast my educators, some of my education, educators listen to it, and they really enjoy it, and they get something out of it. So that's, I appreciate that. No, I'm

Scott Benner 1:00:39
glad a printer and thank you for thanks. So I really that is my underlying goal. You know, day to day, I want to help people living with diabetes, but long term, I just want to impact enough people who will end up in medicine, that maybe they'll say, Hey, you got low, one o'clock? What'd you have for dinner? That's all. Yeah, that's yes, that's my hope. A little bit. I'm just looking for little, little, little advancements on that. I'll ask you one last question. I'll let you go. I know we're up on time. Why do we not talk about the impacts of fat, protein and general food quality with type ones?

Jon Oden, M.D. 1:01:13
Oh, good Lord, I have been, well, I'm not going to blow my own horn, because I certainly don't emphasize this in clinic and in any force at all. But I've always been an advocate for a healthy diet, you know, I grew up on the exchange diet, which was in some way, a healthier diet than kind of a meal ratio diet, which allows kids to eat whatever, whenever. But it's because of the kind of westernized diet that we have that kind of brings that down the ratio down because kids don't have access to really good healthy food. I think the other answer is that the metabolism of protein and fat, although defined in some scientific reports, is difficult in pediatrics, because of their their variability in metabolism. So it's hard to build out a structured education component to, you know, say, for example, a 14 year old football player versus an eight year old gymnast versus a 12 year old who likes to play video games. I mean, how do you build that kind of one size fits all education?

Scott Benner 1:02:18
I can tell you how I did it. Say if you see a rise 960 To 90 to 120 minutes after you've eaten, that's another impact that's coming from slower digestion, you should probably Bolus for it.

Jon Oden, M.D. 1:02:31
That's pretty. Yeah. That's one way I was thinking more along the lines of hey, if I'm gonna have a steak and potato, or pizza, or spaghetti and meat sauce, how do I dose for that? Yeah. And that's, that's challenging. You

Scott Benner 1:02:47
don't want to set somebody up with an extended Bolus, for example, if their activity will burn through that. Right, that right push, right.

Jon Oden, M.D. 1:02:55
And then again, to some families are set up to where they can they can process that information relatively simply. And then there are other families that, you know, Mom and Dad worked three jobs and you know, sisters helping out in the evening. And, you know, it's hard to kind of get them on board with that. That kind of math.

Scott Benner 1:03:13
Yeah. Yeah, I do see the bigger problem. I really do. I just Yeah. But once they ask the question, why don't they get the answer, then, like, once they show the propensity for like, Hey, I don't understand what's happening here. Like, you can't just tell them fat slows down digestion, and because of that your insulin might wane while there's still food being you know, carbs being leached into your system is blood sugar. Like, is that not difficult? No,

Jon Oden, M.D. 1:03:39
no, no, no, no, no, that's not when the question does arise, I think at least I mean, I approach it that way. But I'll tell you, the question doesn't arise very often. What I

Scott Benner 1:03:50
tell people all the time is that maybe the phrase I hear the most that I hate the most is, oh, that's just diabetes. works. Yeah. Which gives away the idea that there could be an impact here that we could understand and do something about.

Jon Oden, M.D. 1:04:03
Yeah, yeah. No, I think and then, yeah, it's one of those things. I think, if you had that hour long, two hour long education piece with a very few number of families, and you looked at their downloads, and you could see their, you know, the waves of their blood sugars and insulin boluses. You could probably say, Okay, on Friday at six o'clock, what G and they would say, Oh, we went to you know, Buster Steakhouse. And you would say Oh, so this is probably fat and protein, we need to do it this way. This is how we would do it. But that doesn't happen in real life.

Scott Benner 1:04:36
So do you have a minute for another question? Sure. No, great. So for people who are never going to get it? Do we just want them to be on like an eyelet pump for example? Oh,

Jon Oden, M.D. 1:04:46
wow, good question. I think there was space for an eyelid pump and it's curtain current programming for such statement. Yeah,

Scott Benner 1:04:55
yeah. Just say look, you got an eight a one say there's nothing and by the way, eights being I'm being polite, right? Like the people who don't get it don't get it to the tune of like 910 11. A one sees, right? Sure. Yeah, yeah. So you say to them, Look, you put this on small meal, it's breakfast, you're gonna get a seven a one C, is that a win? And you because they were never gonna get it anyway, that makes you

Jon Oden, M.D. 1:05:16
look at it from the lens of an agency as being your target metric, then yes, check. And the DCCT did show that I was in a conference a couple of years back where one of my colleagues said something that has just stuck with me. And she was commenting on how some algorithms, you know, shut down insulin delivery for X number of hours. Yeah. And she said, Well, we don't know what happens to your body when it doesn't have any insulin at all. And it alluding to the fact that it could kind of be producing in some small way, you know, metabolites that aren't healthy for you. Interesting. And so I think before we answer that question as to whether or not that pump would be, quote, unquote, good in the long run, we need to know exactly what it's doing to their metabolism. And I think that's going to be, that's not going to come out in the near future that's going to come out over the course of the next five to 10 years. It's

Scott Benner 1:06:16
interesting. I've watched a lot of different algorithms work a lot of different ways. My daughter at the moment is wearing Iaps, which is a DIY algorithm. It kind of manages backwards, like it front loads with insulin, and then takes away basil until it needs to come back again. But you're not really without insulin, because you have a pretty large Bolus going. Right? Do you know what I mean? Yeah. Is that person talking about like, when Basal gets cut away for a very long time? To try to try to save a low? And

Jon Oden, M.D. 1:06:46
yeah, and what is a very long time? Is it five minutes? Is it 30 minutes? Is it an hour? Is it two hours? We have we have? It varies, yeah,

Scott Benner 1:06:53
in this situation is going to keep it because if you're everything settings, like in algorithms, like your, it's all about your settings. So it's your settings, and you timing your meal, boluses. That's pretty much where you're gonna get success from. But it's an interesting idea. I just think that if someone's going to have that unhealthy of a lifestyle to begin with, and time has proven that, that for whatever reason, they aren't changing that, if you can at least put this thing on them that would keep them in as at a seven. I mean, that's got to be a net positive. Like, I get that I get that you can't say that, for sure would be but it feels like it would be,

Jon Oden, M.D. 1:07:28
it feels like it would be to me as well. Yeah, I don't disagree with you. And I think in some ways, you have to say that it's a win, because, you know, their agencies are better and their blood sugars are better. And their, you know, their triglycerides are probably better. So, metabolism has probably moved to a space that it's it's better, but it's better good enough,

Scott Benner 1:07:45
right? Oh, no. Yeah, and I don't think it is. But I guess my question is, what if that's a person who was you just weren't going to reach? Do you know what I mean? Like, it almost feels like, I can't believe I'm saying this feels like a clean needle program for diabetes. Like, I'm not gonna get you to stop using heroin, but I can at least give you a clean needle. Yeah, yeah. No, I mean,

Jon Oden, M.D. 1:08:04
I mean, that's, that's an interesting analogy. But um, I think for now, we can say that it would be a good, a good pump, a good platform to recommend. We can have some baseline assumptions on what it's going to do with some, with some kind of joy in our heart that it's going to do better. But again, do we know that it's the best step forward?

Scott Benner 1:08:28
Okay. My last question about algorithms are after seeing people who are paying attention, learned to understand their diabetes go to an algorithm, did they get dumb about diabetes? So they forget things? Or does that not happen?

Jon Oden, M.D. 1:08:41
I don't think so. Yeah, I

Scott Benner 1:08:43
don't think so either. But that was a concern at the beginning that people had, like, if we put we keep slapping these algorithms on people, they won't know how to take care of their diabetes, but I don't think that's the case.

Jon Oden, M.D. 1:08:52
I don't think so. I honestly I have noted the opposite. In fact, you know, many of these families, and they come from all different backgrounds, I don't want to say that, you know, there is a certain socio economic norm to those groups, but there are people out there who absorb this stuff. And when they get on an algorithm, they understand a little bit better. And they they apply it a little bit better, and they understand it and they're able to do things independently, and they come to see me and they're like, Oh, hey, Dr. Owen. We're doing great. We just changed his you know, his sensitivity other day, and he's doing great, we don't really need you, thank you very much. And then they're out the door.

Scott Benner 1:09:28
I learned more about watching the loop work through like Nightscout I was already but when my daughter started looping a number of years ago now I was really good at diabetes like I had array one C and the fives It was no trouble. I was basically an algorithm already we were you know, Temp Basal Ling taking insole away giving extra that kind of stuff. But watching it do it automate idli I think upped my game. And so I agree with you. I know I keep saying one last thing, but I want to share something with you and get your, your top line reaction from it. So my daughter is 19 and uses Basal 1.1 and our her insulin sensitivity one to 42. Her carb ratios like one to four and a half like pretty, pretty strong stuff, right? But she also has what we thought maybe like some PCOS symptoms, okay, so her physician put her on the lowest dose of ozempic. That's allowable point, like point two, five is as low as you can inject, right? She has not moved up. And she's been doing this for two and a half months now. She lost 10 pounds that honestly, I didn't think she had to lose. But after she lost it, you go okay, that's, that's fair. But that's not the point about the weight part. Her Basal went from 1.1 an hour to point seven, and our insulin sensitivity went from one to 42 to one to 63. And her insulin to carb, I think now is like one to seven and a half or eight. And I'm calculating that show us more than 12,000 fewer units of insulin next year. Yeah, that's great. Yeah, that's great. I have an interview coming out real soon with a third of the mother of like a 13 year old girl has had type one diabetes for over three years, I think was using 70 units of insulin a day on average. And she's down to between four and seven units of injected Basal. She took her pump off and doesn't have to Bolus for food anymore. And she's using weak Ovie for weight loss.

Jon Oden, M.D. 1:11:36
Yeah.

Scott Benner 1:11:38
Are you seeing that? Well,

Jon Oden, M.D. 1:11:41
no, because we can't get those medications approved. Yeah,

Scott Benner 1:11:44
they're cash based off for sure. Yeah, well, not for the but not for this one little girl because she got it approved for weight loss. And then she just happened to have type one and got all these other benefits from it.

Jon Oden, M.D. 1:11:55
every state and every insurance company is different is what we're finding, and we fight the good fight for a little bit. And we've just been kind of pushed back for the majority were advocating for the GOP ones to be covered. But we haven't quite made that a success story. Yeah,

Scott Benner 1:12:14
I think we get there in the next couple of years on that. And that would be great. But I mean, how fascinating is that? That my daughter's needs change, by the way that they would call point two, five of ozempic a non therapeutic dose? Oh, yeah, yeah. It's insane what it did for?

Jon Oden, M.D. 1:12:32
Well, I've had, like I said, I was a runner, and you know, you go on kicks, if not running for very long, and my insulin sensitivity goes down, and my requirements go up. And then I start running again. And, you know, I dropped, you know, 1015 pounds and, you know, comes right back. And it speaks volumes for healthy appetite. I mean, healthy meals, and good exercise every day, which is what we try to instill in all of our kids,

Scott Benner 1:13:00
for sure. And I agree with that. But I need to tell you that the my daughter's insulin adjustments came before the weight loss. Like literally within the first four days, we had to start taking her insulin away, she was getting low. Right, right away. It was insane. Yeah, I keep wondering out loud, if we're gonna learn that people have some sort of a GLP deficiency at some point in the future. Because I will tell you that I, I, the only reason I knew about it to talk to the doctor about my daughter is that I used week OB for weight loss. And in a year, less than a year, I've lost 45 pounds, but I haven't really changed anything about my lifestyle. So it's, I lost four pounds in the first five days after shooting it with just the Iso I don't know, like I can't, I'm trying to stay alive long enough to hear the how this ends, John, because I'm very interested.

Jon Oden, M.D. 1:13:52
But these medications are, are going to be critical in the management of type two. And, you know, there may be there may be a space in there. For certain patients with type one, it's

Scott Benner 1:14:04
very, it's possible. It's not going to be for everybody. I know that like, I also see I don't know if you're hearing from people or not, but the Manjaro know, or the step down. Like that seems to have fewer kind of impacts on people's bowel habits, I guess and stuff like that, like, kind of like indigestion stuff, but but it's just very, it's very interest. It's all in its infancy. And it's incredibly interesting. I'm excited for people to start talking about it like oh, that's what famous people do to be thin. I'm like, there's a lot of application here. So now I can go. Alright, man, I can't thank you enough for doing this. Was this what you expected?

Jon Oden, M.D. 1:14:38
I hope? Yeah, yeah, this was this was a lot of fun. Thank you very much for accepting my request. Oh, are you kidding?

Scott Benner 1:14:45
So some pretty cool people said you were good. So I was like, Alright, oh, good, Lord. So I was like, Alright, I definitely would love to do this. Thank you. Hold on one second for me. Oh. A huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGL You see a ag o n.com. Forward slash juice box. Having an easy to use and accurate blood glucose meter is just one click away. Contour next one.com/juice box. That's right Today's episode is sponsored by the contour next gen blood glucose meter. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast and invite you to go to ever since cgm.com/juicebox, to learn more about this terrific device, you can head over now and just absorb everything that the website has to offer. And that way you'll know if ever sense feels right for you. Ever since cgm.com/juice box if you were a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bowl beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CDC es a registered dietitian and a type one for over 35 years. And in the bowl beginning series Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698. In your podcast player, where you can go to juicebox podcast.com and click on bold beginnings in the menu. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com