Scott Benner 5/6/19 Scott Benner 5/6/19

#228 Get Your Game Face On

Lilah's mom shares her life as a D-Mom……

Alina is Lilah's mom and she shares her life as the mother of a small child living with type 1 diabetes.

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

Scott Benner 0:00
Hello everyone and welcome to Episode 228 of the Juicebox Podcast. Today's show is sponsored by Dexcom on the BOD and dancing for diabetes, you can learn more about the sponsors at Juicebox podcast.com. We're in the show notes of the podcast player you're listening to right now.

Today I'm going to speak with Alina, she is lightless mother. Halina has had a rough go of it being the mother of a child with Type One Diabetes, things are getting better. But there were a lot of struggles early on and she's here to tell us about them. At the end of the podcast, we're going to talk a little bit about nuts and bolts, management ideas, and everything in between. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And always consult a physician before becoming bold with insulin or making any changes to your medical plan.

Hey, if you're enjoying the podcast, please leave a rating and review in iTunes. well reviewed podcasts show up higher in searches, help someone find the Juicebox Podcast leave a review and a five star rating.

Alina 1:28
My name is Alina and my daughter is Laila. She's six years old. And she was diagnosed when she was two and a half years old.

Unknown Speaker 1:42
So you're coming up on four years?

Alina 1:44
Yep. Well, the anniversary Sep. tember 23rd

Scott Benner 1:50
you actually had four years?

Unknown Speaker 1:52
Yeah,

Unknown Speaker 1:52
we're a little more than four year. Gotcha. Okay. Okay. And

Unknown Speaker 1:55
her name again. I'm so sorry.

Unknown Speaker 1:57
Lyla,

Scott Benner 1:58
Lyla. That's a pretty name.

Unknown Speaker 2:00
Thank you.

Unknown Speaker 2:01
I said, She's your first.

Unknown Speaker 2:02
My first.

Scott Benner 2:04
You have a little boy. Oh,

Alina 2:07
I have a little boy who's three. And when she was diagnosed, I was seven months pregnant with my boy.

Scott Benner 2:16
Okay, so you've been busy the last couple of years?

Alina 2:18
Yeah. It's been overwhelming, trying to make it through

Scott Benner 2:24
that feeling that overwhelmed feeling has it been with you the whole time.

Alina 2:29
So I would say like the first year and a half, or I would, I was really depressed. And I would like cry every day. And I remember people telling me after a year, everything will be better. And then when that year mark came and I wasn't better. Then I started getting worried. But like clockwork, it a year and a half I woke up and I realized that my daughter was still happy. And she was all bubbly and excited. And that gave me some peace.

Scott Benner 2:57
Yeah, I think it's I think it's incredibly important not to set kind of false. Like timelines for ourselves about stuff like this. And I did the very same thing. By the way, I had it in my head. At the end of the year, I'll understand this. Like, why I why I picked the year I don't know why didn't I?

Alina 3:14
Everybody told me a year like a year. That was the golden.

Scott Benner 3:18
Yeah, the magical number like why wasn't nine and a half months? You don't mean like, Oh, my year so then at the end of the year, I panicked. I didn't do what you did. You made it out. Six months later, I panic. I was like, okay, two years. That was very, very forgiving of the situation. I was like, well, we just give it another 12 months. It turns turns out none of those things were the answer for you. The answer was just recognizing that a lot of this was how you felt not how she felt.

Alina 3:44
Yeah, I would look at her. She She was so happy, you know, in front of her I had my game face on. And I said it's no big deal. I was always trying to make it. Not a big deal. And she picked up on that which is good. Even Even now I say Do people ask you about your your monitor? She goes, Yeah, but I told them, it's for my diabetes. And it's and that's what it is.

Scott Benner 4:09
Yeah, I think that's what I think Anyway, you can get them too. Two, it's no big deal to thinking of it. It's just part of how things are and not some horrible drain on them or a thing to be embarrassed about. Any way you get to that it's great because that's an incredibly valuable lesson to teach a child or an adult living with type one is that you cannot be you can't spell you know that it's funny. I just got done speaking at a thing this weekend. And I was all done. And I was completely exhausted. And I had spoken I did a morning breakfast where we talked about being bold with insulin with a small group of about 60 people. Then at lunch, I did 500 people in the main hall. And then right after that I ran into a q&a and I must talk to another 200 people along with some other folks on a on a on a q&a panel. And even as I was leaving I felt guilty completely exhausted, but I had a T shirt leftover. So I took it down to the kids room to take, just give it to somebody. And I was I was walking out there was a teen room, and I went in there. And I chatted with him just for a couple of minutes. And one of the kids said that they don't, they don't Pre-Bolus or sometimes don't Bolus offer their meals at school, because they're embarrassed for people to see them. You know, they're giving themselves insulin. And this was just a person with a pump, not not injections. Yeah. And I told the whole room, I said, Listen, nothing, nothing can be as important as your health. You know, you can't let someone's opinion or, you know, a sideways glance from somebody, or even being embarrassed get in the way of your health. Those people will be long gone later in your life, when you're having trouble because you just didn't want to Bolus in front of them.

Alina 5:52
I know. And from the get go, I would check her finger in public, because I didn't want a whole life of hiding. And I didn't want her to have a complex. And so I think that's working out well. And then I took her to a diabetes camp recently, and everybody's doing it out in public. So she feels a little more. She's not as doesn't feel as alone.

Scott Benner 6:19
I believe in the free love version of diabetes. So there's a 16 references in it. Look out why

Alina 6:26
I was born way after

Scott Benner 6:28
I told those kids in the room like you any of you listen to the podcast and a couple of them raise your hand and I said is it seeming like a bad idea? Now that you see it's an old man doing it? They looked at me like yeah, I kind of know i think that's that's spectacular. I don't I once wrote a whole article about hiding there is somebody on an airplane who got yelled at for like checking their blood sugar or giving themselves insulin in public. And it made me so angry that that they they were told to like go, you know, shuttle off to the bathroom when a plane. Yeah, give themselves their insulin there. There was no harm in what they were doing.

Alina 7:06
I mean, going back to like, the early years with her is she she was about to choosing a preschool. And they came up with the lame excuse of Oh, parents don't want to see. Don't want to hear about a girl. Blessing check. So they kicked her out of the preschool. Really? Yeah, it was a private preschool. So they're not they didn't receive public government funds. So they were free to do whatever they wanted to do.

Scott Benner 7:38
Money against your daughter for checking your blood sugar, because they thought other people wouldn't want to hear that that was happening in the room.

Alina 7:45
Right? And it was such a battle finding a preschool for her, I would say maybe like six places rejected her. Nobody really wanted to deal with it. Because, you know, a lot of work.

Scott Benner 8:00
Yeah. And then by the way i get that I get if it's somebody who's like, Look, we're not qualified for this, or I don't feel like I could take on that responsibility that I at least understand a little bit. But, you know, to stigma because imagine you're I mean, she's your oldest, and she's two and a half. And now she's being stigmatized and told like no, like, get away. Dirty do. And that's now the problem you're dealing with early and like building a family. I imagine how long were you married when you had her?

Alina 8:31
Oh, had her? I was married two years prior.

Scott Benner 8:35
So you're building a family. And there's there's your beautiful little girl. And then and this is happening? Did it Do you think that was part of the depression?

Alina 8:45
For sure. Like I I felt like everyone, just like you say I felt like all the adults were afraid. And I literally for one preschool did all the training, like did outlines did all the charts. And the day before it was supposed to start. They said no, you know, we're not equipped to handle her. So they

Scott Benner 9:04
were a yes. And then they were no,

Unknown Speaker 9:06
yeah, I

Scott Benner 9:08
think the preparation scared them.

Alina 9:11
It did scare them. But I didn't know any other way to simplify it. You know, I kept trying to simplify it. But then in the end, there were some details that are important.

Scott Benner 9:20
We look back now. Do you see how that those details? Probably they were like, Okay, this is a lot.

Alina 9:26
I totally get it. But I didn't know what I was supposed to do.

Scott Benner 9:29
No, I don't. I don't blame you. I'm just saying it's interesting what hindsight does, because I can look back on some of the conversations I had early on. And I think oh, there was a crazy person standing there explaining those people. Yeah. Right. Because isn't it What happened is you thought of all the myriad of possibilities. And you felt like you had to explain what each and every one of them was.

Alina 9:53
I did it was even confusing to myself. So, you know, I didn't even have it figured out but then we Found a preschool an hour away. And it turned out to be the best place ever. The teacher would had no fear. And she never complained about it. And like that was the first time that I could just relax and know that she was responsible. We would text all the time throughout the day. And that was like a very pivotal part to helping me get over, you know, my depression,

Scott Benner 10:29
finding the right person to support you. Right, and starting to build your own little community there.

Alina 10:36
I did, it was an hour commute.

Scott Benner 10:38
So while I was just gonna say, I mean, you must have really loved it. Because an hour I mean, how did I get there? Did you FedEx her in the morning? It just

Alina 10:50
gets worse. Once I dropped her off. It took me another 45 minutes to get to work.

Scott Benner 10:54
you're commuting almost four hours a day just because of one of the preschool?

Unknown Speaker 10:59
Yeah.

Scott Benner 11:00
Oh my gosh, did you ever consider just locking her in a closet and going to work? I mean, I don't think that's legal, but it does.

Unknown Speaker 11:06
I'd worry about her lows. I couldn't do that.

Scott Benner 11:10
I ended my kid, but she's got diabetes, and you see her blood sugar? No, I mean, but seriously, that's an incredible commitment from you to get her to something that was valuable for her and for you. I mean, it was no joke because you live in California to write

Alina 11:27
on Los Angeles, the heart of Los Angeles, an hour

Scott Benner 11:29
and 45 commute you had to drive home with what you driving three miles, maybe four? Oh, I

Alina 11:34
don't know. too long, too long traffic out there from the valley. I would drive from the valley to West Hollywood to downtown LA.

Scott Benner 11:45
Oh, bless you. I mean, that really is your good mom. Because because that's a lot of effort. You know what I mean? Like just to find a good situation for so what changed for you once she got there? And she was being supported? I mean, I guess the first question is, what was the person you were leaving her with? What what kind of, I guess attributes that they have that made it a comfortable situation?

Alina 12:07
She was just super confident. She said, we're going to keep her here. We're never going to ask her to leave. She was just very smart. And had no experience with type one whatsoever. But just didn't complain didn't make me feel bad. Like I remember in other preschools that I would be in a panic if I knew she was going low. You know, I didn't know I wanted to protect them from anything. And whispered

Scott Benner 12:37
I'm sorry. So you were right now about Laila and about the people at the preschool in the obvious ones. So you were you were shouldering the burden for all those people at that point,

Alina 12:46
all of it. And I like glitter. That was like, such a traumatic time for me being rejected all the time. And then to be accepted finally was such a relief. And I mean, I felt like a normal person again, where I wasn't in fear that she was going to get kicked out.

Scott Benner 13:03
Yeah. And that was this just lip service, or were they actually good at like, where they just be like, Don't worry, everything's gonna be fine. And everything. Well,

Alina 13:10
she had no idea what she was doing. But I trained her and I texted her throughout the day.

Scott Benner 13:14
Like she was open to doing that with you.

Alina 13:17
He was open. And she's like, she just wasn't scared. Like you said, like fears. Anytime I look for, like a babysitter or anything, I'm, I need to know that they're not scared, because I can't work with that.

Scott Benner 13:32
Yeah, well, I mean, it's too It's too limiting. It just really, I was just listening to something that's going to go up today, which of course, by the time someone hears this will be six months ago, but it'll go up today. And I was saying, like, even just slowing down to pause a little bit, you know, being scared to Pre-Bolus as an example, like, if you just pause a little bit, it's too late, you've missed your window. That fear with diabetes is, you know, you have to you have to obviously understand what you're doing. But then from there, there's no no moment to pause, just, you know, do what you know, is right and go and, and that fear freezes you it messes everything up.

Alina 14:10
Um, when I was going on at the time, my son, he was born in December, the end of December of 2014. And then he ended up in the NIC queue for just a myriad of reasons and nothing that serious, but he was there for 10 days. And this is all while we're trying to figure out how to care for Lyla.

Scott Benner 14:32
So it was a crazy time to say he when he's born she's only diagnosed a couple of months, right?

Alina 14:39
Yes, and I and I just found out from a friend that there's something called a CGM, and I pushed my endo office to get the dex calm and a pump. And they were telling me the whole spiel about wait three months, you know, theory and used to injections. And I said, That's crazy. I'm about to give birth. I need help. You know, I need technological assistance. And so I finally got those devices. But I got the the CGM like right before I gave birth and I got the pump, maybe a month afterwards.

Unknown Speaker 15:14
Okay. So it did end up taking three months, which is, but it could have been longer if I had just waited, like they said, right, they would have made you wait three months and then it would have taken three months. Give me one second here I'm gonna text Arden about a bolus she needs.

Scott Benner 15:31
Um, the pod created their pod for anyone with insulin dependent diabetes. If you start today with the Omni pod, you can say goodbye to needles and pens. If you have diabetes, and your body requires insulin, you need to know about Omni pod, it can make your diabetes a smaller and more manageable part of your life. I'm talking about people with type one or insulin requiring type two diabetes. Those people and the caregivers of children and adults with diabetes are choosing pod therapy as a simple, smart and discreet way to control their insulin and manage their diabetes. With pod therapy, you have a proven reliable insulin management system that can provide up to 72 hours of continuous insulin delivery. It all starts with their tubeless design in a wearable pod that is waterproof, discreet, controlled by a personal diabetes manager. And the PDM can help you accomplish everyday tasks like carb counting, bolusing, Temp Basal, and much more. One of the things I love the most about on the pod is that they don't make you take some guys word for it. Yeah, my daughter has been using one for 11 years and we love it. But you don't have to trust my word. I mean, you can say Yeah, that makes sense that guy teams to know. But I'd like to know, for myself. Well, you can go to Miami pod.com forward slash juice box. You fill in your name and your address. And on the pod, we'll send you a pack in the mail. That's not a kiss. That's a pod experience kit. That's right, you're going to receive a free, no obligation demo of the Omni pod that you can try on where and make the decision for yourself. Miami pod comm forward slash juice box with the links in your show notes for Juicebox podcast.com. Arden is full on mature at this point. And the last number of days. Her blood sugar has been insane. Oh my gosh. So something that would take say 13 units was suddenly making like 26 units.

Unknown Speaker 17:43
Wow,

Scott Benner 17:43
it was doubling her bazel from 1.4 to three an hour. And that wasn't enough. We were we had double bazel and boluses. And everything was just everything was a mess. And last night like it she's supposed to get her period yesterday. And this morning she wakes up and her button her blood sugar's like four o'clock in the morning, it's getting low. And so I'm trying to bring it up and all of a sudden now I can't bring it up. So I'm like, okay, so I finally get it up and I send her off to school and it starts going up again. And now I'm like, okay, is this like a trend? Like it's gonna go up like crazy up like it has been? Or is it going to now mimic the low the lower thing and like back to normal and, and so I got really aggressive in the morning, but then that made her low. And so we fought with the low, you know, got that insulin through her and then headed into into the lunch and I was like, oh god, what do I do? So I you know, like Pre-Bolus not as much as I should have, but not by much. I didn't it didn't. I didn't kind of you know, I didn't wimp out completely. But our blood sugar's like 160 now an hour half after lunch. And so I'm gonna try to get her to push it down here.

Alina 18:52
We have a different situation going on. I think something happened with the breakfast bolus, and it didn't go through. And now she's that Hi. So my husband is going to rush over and change your pie and give her another correction.

Scott Benner 19:09
She's and she's now in kindergarten,

Alina 19:12
do you think kindergarten. And we have this whole system where for certain hours of the day, the nurse and I monitor her so I'll text the nurse if she needs to treat a low and then I have an aide come in, that I pay for for like four hours of the day who can pose her for insulin and monitor her because Laila is so dependent on adults.

Scott Benner 19:43
So this person just rolls up for a couple of hours and handles while his blood sugar's for you.

Unknown Speaker 19:49
Yes, God bless, sir

Scott Benner 19:50
and you don't have to be involved at all. She's just, she's

Alina 19:54
Oh my god. She's so so I had one aide last year, Brianna and I have another eight this year, Kaylee, and they're so great at first, of course, I was texting, like to make sure they treated lows and everything. But there's so on top of it, that it's the first time that I can work. I actually work full time. And so I can actually focus on my work instead of my Dexcom.

Unknown Speaker 20:20
Good for you. That's amazing.

Alina 20:23
And the rest of the time I text the nurse. So I'm always monitoring.

Scott Benner 20:29
And I just clicked around and looked here so I could see the dates. But what is it now that right now it's November 2018, which will throw people off when they're listening in the middle of 2019. But in January of 2019, I'm going to interview Brianna. Yeah. Oh, yeah. So you're on and then she's on. And we won't give Breanna story away. Because it'll be it'll be more fun to hear it there. But, but I think that is really cool. So let's kind of backtrack a little bit. So she's she's diagnosed and it's only a few years ago. You obviously didn't leave the hospital with the CGM, because you had to fight for one. But how are you giving insulin? What did they give you? On day?

Alina 21:05
Oh, syringes. They we only stayed a night. And in the morning, there was like a two hour lesson that I had no idea what was happening. And no one was in my family was paying attention. And of so overwhelmed. And they said, just go home and give these injections, and good luck. And my parents were actually in another state on vacation. And so I called them frantically to fly back and they're like, you'll be fine, you know, didn't really understand,

Unknown Speaker 21:36
like, Don't ruin her vacation.

Alina 21:39
I'm like, No, every hour, I'd call fly back. I need you. And then they finally flew back. And they're like, Oh, this is what you're doing. This is intense. We didn't understand all that.

Scott Benner 21:51
Hey, you had you were probably pretty far into placenta brain by that part of your pregnancy, right? Like, I

Alina 21:56
know. My body was shaking from the diagnosis. I was shaking, I was worried I'd go in like early labor. And I called my ob and he's like, you'll be fine for another two days. Because the fluid is circulating.

Scott Benner 22:12
Like nothing else, comforting.

Alina 22:14
None of like, Wow. Okay, I have two days to calm down

Scott Benner 22:18
with your parents at least on like a really great vacation where we could all feel like, Alright, I wouldn't have left either.

Alina 22:23
Um, I don't recall where but they were really upset about leaving, and they went a year later to the same place.

Scott Benner 22:30
That's very nice. Yeah, listen, I don't it's a great example. Right? Like, they're, you're telling them what's going on? And they're like, oh, diabetes, that doesn't sound that serious.

Unknown Speaker 22:41
Okay, medical How?

Scott Benner 22:43
It's all gonna be fine. Please, we saved for this trip.

Unknown Speaker 22:47
I know. They said that. I feel like you

Scott Benner 22:49
owe them a trip after like later when like,

Alina 22:52
well, they kept bringing it up or down location again. And so they did and now they're fine. But but

Scott Benner 23:02
wow, that made me laugh. Okay. So you add you add in you add syringes. And that was obviously, especially in the early. I mean, I remember the first couple days, it's ridiculous. You just, you really feel like someone handed you a gun. And you never shot one before. And you

Alina 23:18
just never given an injection before like, Oh my god, terrifying. And I remember my husband gave the first injection and he started crying. He never cried. You know, like that. He just did that to his daughter. And then my daughter was in the hospital screaming like, what are you doing to me? And like that scream is still in my head for saying that. What are you doing to me? You know, she's little, she's tiny. Someone was

Scott Benner 23:45
just telling me the other day how they used to have to pin their kid down to give them injections. And I remember, I had to do that with Arden sometimes too. Well, okay, so do you have Are you still injecting now?

Alina 23:59
Oh, no, it's the Omni pod. Because once the Animus ping, ping went out of business, you push to Omni pod with the Dexcom g six and we use Kriya insulin.

Scott Benner 24:15
How is that? How

Alina 24:16
did you I love it. It made a huge impact on Laila. Like the corrections were so much faster. And that kind of was the beginning when things started getting better for her.

Scott Benner 24:30
Yeah. Well, what what insulin did you start with? What's bad about that one first?

Unknown Speaker 24:34
novella, same company, they

Scott Benner 24:36
don't care. And so yeah, so and she moved to the is it Fiats per Fiesta? I don't, I

Unknown Speaker 24:42
don't know, should I should

Scott Benner 24:43
spell it in a way where it's not ambiguous. But anyway, that's faster.

Unknown Speaker 24:48
I think that's why the app part right,

Scott Benner 24:50
that's where the name comes from faster insulin as part so that's really sexy. But but never. Nevertheless, the naming By the way, naming for drugs to see incredibly complicated. The FDA has a say in it you can't make you can't sound too much like another drug. It's there's like,

Unknown Speaker 25:06
wow, Bobby's about it. But,

Scott Benner 25:07
but nevertheless, so you've how long you've been using that one, the new one

Alina 25:11
came out as soon as it came out. So it's been a couple months.

Scott Benner 25:17
Okay, as soon as they said it was okay for pumps, or no, it's not okay.

Alina 25:21
As soon as they came out with it on the market here, and they said, it's, it's approved for adults. So my doc doctor just did you know what he needed to do?

Scott Benner 25:33
Cool. So yeah, because it's not. I don't think it's FDA approved for pumps yet, but people are using it in pumps.

Alina 25:40
Yeah, I don't know why more people don't use it. It's really amazing. And the Pre-Bolus is there so much shorter.

Scott Benner 25:48
How about was later you see any lows later.

Alina 25:51
Um, we have lows before. So we don't see any lows later. It just everything is faster, like the corrections, everything just goes at a faster rate, which is great, because we would sit there for like three hours and wait for her numbers to come down. You know, everything that you face and deal

Scott Benner 26:13
with? Ellison, it happens you got to just figure out how to stop. But when it first happens to you, there's no real way to you can't just guess it's it's, you need to wait until somebody kind of sometimes explains it in a way that you're like, Oh, that makes sense. I'll try that. Okay, so you're using an insulin pump using Omnipod? Using Dexcom? Are things like you said things have been better? Where things not good in the beginning, like in the very beginning, were like blood sugar's crazy. Were you guys struggling with that? constantly?

Alina 26:42
Oh, yeah. I mean, we, we, she was diagnosed really early, she was a seven point 91 C, but such huge spikes and drops. And we were at Children's Hospital. And they have a really great program there where I could speak to a nurse every day if I wanted to. So I literally would email the nurse every day with her numbers and ask her what settings I needed to change. And I would change the settings constantly. And, you know, for like a year and the poor nurse. She went on vacation for two weeks. And while she was gone, I realized I could just do it myself. And she came back and I like barely ever contact her anymore. But I was really glad she went on vacation that one time

Scott Benner 27:35
because I thought like your parents vacation. You're gonna be like I made her come home. And no, yeah, I mean, honestly, that really is the truth. Like it's, I heard a million people say it this weekend. But you have to be able to make these adjustments on your own plus, have you learned that making them as frequently as you were probably wasn't. valuables you thought?

Alina 27:58
Oh, totally. What happened is, let's pop a year ago, she had an 8.181 C, and that just traumatized me because she had always been in the low 70s. And I realized my set my perfecting the settings. settings had done nothing for her. And maybe I should just improvise a little bit more. And that's when I started listening to your podcast. And I now I only change settings maybe every two weeks. But I'm saying tip

Scott Benner 28:34
when you're saying settings, you mean insulin to carb ratios or basal rates are what

Alina 28:39
override insulin to carb ratios and ISS.

Scott Benner 28:42
Okay, I only change that stuff as artists growing when she gets bigger and requires more insulin. I move her basals up in her, you know? Yeah, to be honest, I don't it was her insulin to carb ratio. I don't even really, I don't know what that is. But I it's not that I don't let me start over. I know what an insulin to carb ratio is. I don't use it. I don't pay attention. Hey,

Alina 29:03
you know, it's still like in the back of my head that I want to prevent low so that the school doesn't kick her out. I still have that in the background that said I'm sorry. It

Unknown Speaker 29:13
is sad. Yeah. No,

Scott Benner 29:15
I feel badly when you said that. Just the idea that that stuck with you. I understand how it could have but that it's stuck with you for so long now that you're not in that situation anymore is a good indication, by the way why you don't treat people like that. Because it's it's difficult to shake stuff sometimes. And excuse me, people put these thoughts in your head and it's difficult to get away from but I hope you can let go of that one because, you know, I mean, you don't want her to get low because you don't want her to get low but not because somebody was mad at you that that I don't want you. I don't want you living like that. Yeah, okay. All right. So okay, so I would say oh, I usually This will be fun. I usually unplug the phone during the podcast, but because it's Election Day. Oh hoping that I get Like a robot cloth from like a, like a famous person, but instead it's gonna end up being like my mom or something like that. I'm gonna guess it's my mom called her lately. Well, she and I were texting on Sunday. And I said, she cheated. My mom has the ability. See, she won't give up

Alina 30:22
after a really loud rang. Yeah,

Scott Benner 30:24
well, it's an open floor plan. So it's, it's echoing around, you would think she'd stop? This is fascinating. I'll edit most of this out. But you and I will sit here then I'll tell you the story of my mom. So my mom can and I'm sure everyone says this, but my mom calls at the absolute worst times. Always. It is I used to believe that she had a camera in my house. And she could see when was the most inopportune time and then she would pick up the phone. And and and i don't know that that's true. I don't believe she's technologically advanced enough to accomplish that. But I do believe that, that on some level, she can feel me. Yeah. No, I'm adopted. Not even. she bumped around. She basically just picked me up like in a like a food market. Oh, I don't know where they where she came from. Yeah. But anyway, my point is, is she calls at the worst times. So the reason I texted with this weekend, I'm on stage, getting ready to start and I get a text while on Hey, what's going on? Yeah, Mom, I'm in a different state about to speak to a whole bunch of people. And she's like, Oh, okay. And then, but it's not just though. Okay. Then she still asks the thing she,

Alina 31:43
yeah, Yes, I have. I know what that's all about. What's my mother in law? I said, I'm with a client right now. Is it urgent to those? Okay. Just one minute, I need to tell you about the pants that I bought Laila.

Scott Benner 31:58
That's my mom. My mom does that my mom and your mother and one might be the same person that mom I can't right now. The house is on fire and Arden's dying on the floor. I have a lot to do. Yeah, that's fine. I didn't mean to bother you. Just real quickly, when I look at my computer, and this thing pops up like no, no, not now. Anyway, and why did my answering machine not pick up? I have a lot of questions, but we'll get past those right now. Anyway, my point was, I didn't unplug the phone for our podcast, because I'm hoping some famous robo call calls and I'll get it on my machine. It'll be like, Hello, I'm Barack Obama, or something like that. It's gonna Oh, that's what I was hoping for. Anyway, instead, we got my mom's ring 19 times. I'm very sorry. Are you ready to see your glucose levels in a whole new way? Well, the dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. That's right, the dexcom g six continuous glucose monitor helps you see where your blood sugar is going, and how fast it's getting there with no painful finger sticks. Now if this sounds like the work of wizards and witches to you, if you've never heard of the dexcom CGM. Let me tell you a bit about it. CGM stands for continuous glucose monitor. And I'll tell you what this beautiful little device is at the core of how we help my daughter live. unencumbered, and happily every day with type one. I'm recording this around 930 on a school night. And Arden's blood sugar is 71 and stable. That's right, my daughter is going to go to bed tonight with a blood sugar I'm guessing at about 78. And it's gonna sit there as steady and as peaceful as can be. And if it doesn't, if it tries to go up or down, I'm going to get alerted. And then I'll make a decision and take action. But if it stays nice and stable there 70 870-980-8182 wherever arrest restful night's sleep, it will be. Come on, that might sound good to you. By the way, I'm telling you what my daughter's blood sugar's right now, but she's not with me. How am I doing that? Because I have dexcom share. That's right. My daughter is using a follow app on her phone. And I can see it on mine that's available for Android and iPhone. Come on dexcom.com forward slash juice box, go find out about it now. It's gonna change your life. You're in a really interesting position because you hope you're holding on to some thoughts from years ago. You're obviously I mean, I don't want to put words in your mouth. But it seems to me like you're still nervous because the aid so that Laila doesn't have to wait with five or six other kids. I mean, that's, I think a lot of people would have heard that been like the kid could just stand in a line. But you really, you said she can't stand the line. So just she can't stand on the line mean, something bad's gonna happen. It's just

Unknown Speaker 34:56
like you don't want

Alina 34:58
her Pre-Bolus at a certain point. Hi. And sometimes those kids could take a while, like half an hour, and then her lunch is over. Like I can't, they only have like a half an hour lunch and a half an hour recess,

Scott Benner 35:12
you definitely don't want that. Like either her Pre-Bolus will be too late. Right? Or she'll waste away all the time. Now she's in kindergarten. So she's what she five or six,

Unknown Speaker 35:22
she's in first grade. Now.

Scott Benner 35:23
She's six,

Alina 35:25
six, and let me just tell you, she's so hyper and, like, not focused that someone else the aide sits with her at lunch to make sure she eats. Or else she would just talk and talk and talk with their friends.

Scott Benner 35:39
That sounds right, though. You know, like, I think I was probably like that when I was six. I might be like that. Now, to be perfectly honest. Because that was gonna be that's what I was gonna ask you. I mean, I'm assuming this isn't how you want to do this forever. So, I mean, podcast a lot. Are you considering texting when she's able to?

Alina 35:57
Yeah, well, right now I'm texting the Nurse Aide. But let's just not you know, she's not ready for that yet. Ready for that? And I'm just like, holding out hope for the Omnipod horizon to make my whole life better.

Scott Benner 36:10
I think it definitely well, by the way. I but but so but if say horizon wasn't on the horizon, sorry. It say it wasn't coming. Would you think at a moment when you thought she could handle it? Would you take the nurse out of the chain and just be between you and her?

Unknown Speaker 36:26
What's the goal? Yeah,

Scott Benner 36:27
no, I think so too. That's excellent. But I mean, it's six years old. There's a lot of time still before that's going to be Oh, yeah. Before that's going to be something you can do. I mean, do you have a time in mind where you think she's gonna be okay. Are you just gonna wait and see how it goes? Well, I

Alina 36:45
have no idea when she'll be mature enough to handle it. I keep asking because some people say 10 Some people say 12. Some people say 18.

Scott Benner 36:54
Oh, keep in mind, some people told you would take a year for you to completely understand. Yeah, I wouldn't. Yeah, I think it's gonna be when you see, when you see it in her, you know, when you're like, Okay, she can she'll handle that she'll answer my tax. She'll do what we talked about. You won't get distracted while we're talking. And, and keep in mind Also, please, it still happens. You know, I mean, Arden's 14, she's a freshman in high school. And how long ago now that I tell you, I was gonna ask her to Bolus. She hasn't answered me yet. It's been like 10 minutes. It's not I mean, it's this is just a little bolus to bump a blood sugar. So I'm not worried about if it was more dire in some way. Then I have other ways of you know, getting

Alina 37:38
Yeah. No, but Laila still so little, like, learning how to write I don't think engines read, right. And so I wouldn't trust her to read words on the pump. And don't don't get me wrong.

Scott Benner 37:53
I wouldn't either. It takes Okay, I finally got a hold on there. It takes Tobin it's the right thing to do. You know, it can't be, he can't rush something like that. You can't say, Oh, she understands some of the words like I was talking to someone the other day whose child doesn't really, I think, speak English that well. And so and the mother, like, and she's like, I gotta wait till she gets all this better. Because she's like, she's nine, but she can't read. Oh, I know who it was. I think it was like, I forgot. It was somebody I am hoping to get on the podcast. But she I think she adopted her child. And the kids still learn how to read English. And she's like, she can't read it yet. They could use me for a minute. I was like, you have a nine year old, they can't read. I think that seems odd. But then I realized what was happening. And I was like, oh, that totally makes sense. But that was her barrier as well, which has, I can't 100% trust that even what I'm saying is being picked up. But I'm going to tell you that once it is texting is absolutely one of the best tools I've ever found in my entire life. It changes everything, it makes things more immediate.

Alina 38:58
And I I wonder what the new technology if we'd be able to bolus her from our cell phone in the room when we're not anywhere near her remotely.

Scott Benner 39:10
So that's, if that ever happens. That's far off. I would think the first time. Look, I have no idea. But that's the FDA is has been in the past rigidly against that. And my understanding through conversations I've had recently is that they're, they're softening on the idea. So I think once they've now you know, like, you know, very soon the the dash is coming out from from Omni pod. it'll, it'll be out when this goes up. But all that is is a lockdown android phone that speaks wirelessly, you know, to the pod. So I mean, I think once the FDA saw that they're like, well, what's the difference between that one and this one? Well,

Alina 39:56
I have to be within 20 feet of her.

Scott Benner 39:59
It'll still need to be Yeah, probably in Bluetooth distance. Yeah. And so, like, so yeah. When when are they gonna let you bolus from your bedroom from another device that's not directly connected to the pod? And the answer is, I mean, who knows, you know, I mean, like, when you stop and think about it, if you wanted to be able to send, my car has a remote start, right. So I go into an app, and I remote start my car, that means I send a signal, it goes up in the cloud, and there's something in the car that receives that signal, but you're on the pod pump, your the pod itself, never going to have anything in it that can receive a signal from like, like from the, you know, from from us satellite, or from the internet. So, and you couldn't build that kind of technology into the pod. Like, imagine how expensive that would be to build that technology into the pot borrowed away every three days. So there's gonna be something, you know, you'd probably have to still have your dash with you. Like, say, your kid had his dash with him, maybe the dash could be connected to the internet and you could remote dash. But still, that's up to the FDA to loosen up on I do know, the pump companies want that they're some of them are trying to, you know, move the FDA in that direction. But I think it's gonna take some time.

Alina 41:16
But the most common fight between my husband and myself is who's going to go up in Bolus her. And I don't hear that a lot on your podcast. But like, that's like, all we fight about is like your turn, your turn. And we have to do for two storey house, and we watch TV downstairs are so tired. And

Scott Benner 41:38
yeah, that that happens here. I mean, used to happen a lot more frequently than it does now. But I Oh my God, I know you're watching television like pause, I gotta go upstairs. And then it's, it's 11 o'clock, right? You're like, Oh, my God, this was my life. Like, this is the part of my day I was excited about Yeah, you're like a lump watching this television show. And even though I might get through,

Alina 42:00
but he he's the one that gets up at night. Oh, no. Yeah. And he goes to he sleeps in and then goes to work later, he has his own firm. So he's able to do that. And then I have to wake up early every morning to drive Laila. So I'm out at night. And so he holds that over my head and says, I do deny you better golf now.

Scott Benner 42:29
Well, you're you could probably persuade him, you probably don't have enough energy to persuade him. So I guess

Unknown Speaker 42:36
I try to bribe him as

Scott Benner 42:40
well, that is really cool, too, that you guys have shifted things around. It doesn't surprise me. I mean, when you told me in the beginning that how far you're driving, just to get her to to a decent place for care. I would think you would go that extra mile for the other stuff. And it's cool. So your husband pops up overnight. He gets the broken sleep. He sleeps a little extra in the morning and has that freedom to go into his own business? A little later in the day.

Alina 43:03
Yeah, cuz he's able to fall back asleep. And I can't do that. Like I tried in the beginning. And I would just be awake the whole night. just worried to say is that anxiety that keeps Yeah, definitely anxiety.

Scott Benner 43:16
Yeah, I did last night. The girls like passed out. And an Arden's like I said Arden's blood sugar was incredibly high for a couple of days. And then, and so they were watching television in my room, they fell asleep together. And when I went upstairs, I thought, I'm just gonna leave her here, because I'm probably going to be fighting with this blood sugar all night. And then it was, you know, it was kind of fine. And then all the sudden low, and I was like, so I was just fighting in a different direction. So I did, I did what I did around 4am to stop this 65 diagonal down that I had going on. And, you know, as soon as I saw the diagonal, down, arrow go away, and it came back to 70. I went right back to sleep. Or I was just like, goodbye, but I I have had nights, like the ones you described, where I look, and I think I don't trust what's about to happen. And then I'm, you know, before I know, and I've watched three episodes of something on Netflix that I've seen six times already, you know, and because you are worried like, this doesn't seem like it's gonna hold. I've definitely had that experience more times than I'd care to remember.

Alina 44:21
When I have to be at work, you know, in the morning, I just need sleep.

Scott Benner 44:24
Yeah, you have to listen, you can't one of the things I like, you know, in the middle of my talk, yes. The other day, really just talking about insulin, I made sure to stop and tell talk to the parents in the room for a second and tell them the exhaustion piece is huge. Like you get a you know, I found myself saying when you get exhausted, it happens in an incremental way where you don't kind of feel it coming and then once you're there, you're trapped there you're like on the you know, like you know that Stranger Things where they're all behind the walls like you're behind that wall. Now you don't know how you got back there and you definitely don't know how to get out and you almost don't know what's happening. to you. And so you're lost in this fog. It's really important for people to cover for each other if they can and to get as well as possible.

Alina 45:08
And during the day, I'm the one monitoring her. So that's my whole workday is like monitoring and working, monitoring and working. How much?

Scott Benner 45:17
How much trouble Do you have like passing off that night? Like, do you have trouble looking at your husband and being like, okay, it's your turn now and not thinking about it? Are you tired enough that you're able to do that?

Alina 45:28
Come again,

Scott Benner 45:29
are you like, like, do you feel anxiety when you pass the baton? so to speak?

Alina 45:34
Yeah, I used to Oh, my gosh, like when I wasn't with her, I was freaking out. And then one day, my mom was like, I'm watching her, go, relax. And now I can just switch it off, and I'm happy to pass the baton. I'm like, I'm going to bed. Good luck

Scott Benner 45:51
with our people I know who are listening. Who I have heard that? Because I said to someone this weekend, you know, they said, Oh, are you not watching Arden's blood sugar while you're here? I'm like, I'm in Ohio. Like, no, I'm not watching it. You're like, my wife's watching. And when I'm watching my wife's at work, you know? Yeah, she's not watching it. She's working, and I'm taking care of it. So and is it necessary for you to look at it as often as you like, How frequently do you think you're aware of her blood sugar?

Alina 46:19
I mean, I would I look every 40 minutes or so? Because sometimes the nurses with other students and she doesn't, she doesn't see it. So we're like each other's backup.

Scott Benner 46:32
So where are the settings on her CGM? like where do you Where are you alarmed for low and where you alarm for high?

Alina 46:39
For me, I put it at 85. And I think the nurse wants a slightly higher so it's that like 95. But I told her not to treat a low with fast acting glucose unless she's under 80. So she knows that but it just puts her on alert. And then the highs I don't even keep a high alert because I'm always watching her numbers. I

Scott Benner 47:04
mean, what if you put a high alert on then you wouldn't have to watch. Because then when you weren't being alarmed, you would know you were somewhere between 85 and that number?

Alina 47:12
Well, this what happens is, she always goes low, mid morning, she's never high. And then by lunchtime, she needs the bolus. And if she needs a correction, that's when the aide does it. And then at two o'clock, the aid is still there and can give a second correction or in between Temp Basal. So someone's always watching. Okay,

Scott Benner 47:33
so I've two thoughts. And of course, you don't need to take my my thoughts as anything other than my thoughts. But I would practice on the weekends, I would take a high threshold and move it down to I don't know 130 and not look at that thing unless it beeps. Help yourself a little bit. Because if between 130 and 85, I'm assuming you'd be very happy with that. Walk right and so. So instead of being anxious all the time, wondering when she's going to get higher, just know that it'll tell you and then let go, you know, you can just let go in that space. And you know, the lows, the way you're handling the lows is completely reasonable. I mean, she's, you know, six years old, she's in first grade, I'd start thinking about a low around 80 if I was you as well, we don't do it till 70 but Arden's also older and you know, we, we've been at it longer and stuff like that, too, but I think you're doing I think you're low thresholds. Terrific. I think the way you're handling that sounds amazing. But I think for your own sense of sense of what sanity You know, I think if you did that other thing, you would learn pretty quickly that you can trust it, it'll tell you when she goes over that 130 and then do something that's just a glance, but I need you to be more relaxed.

Unknown Speaker 48:49
I want

Alina 48:51
you to have this, you know, I have a younger son who needs my attention also. So that's another wrinkle is that I I literally spend more time with my daughter than with him. And I'm always feeling guilty about it. You know,

Scott Benner 49:11
all you got to do is move that high threshold down and find

Alina 49:14
the answer to all my problems. It actually might be

Scott Benner 49:17
it because it because think seriously when you think about it. Like I'm I'm not looking at Arden's blood sugar right now Arden's blood sugar's where I know it is I've done something she like I told you she was a little elevated. We've done something we've put insulin in. Insulin doesn't work in the first 10 minutes, the first 15 minutes it's not going to bring a 160 down to 90 and in the next half an hour. Because I haven't used too much I know how much I've used I've trust but what I've that what I know is going to happen. So I don't think about it again. And and if I look up at it again, it would be an hour later but even at that. If it's not beeping, then she's not over 120 and she's not under 70 in it. If she was dropping fast, then there are alarms for that you have the quick drop alarms on.

Unknown Speaker 50:05
Yeah,

Scott Benner 50:06
so if it's not beeping, you're good. You know, let go a little bit, just a tiny bit, pretend that alarm is your glass of wine. Just sit back with it and relax when she's in that range, just nothing else counts. That's what I want for you. And I want you to figure out a way to trick your husband into going upstairs and bawling at night.

Unknown Speaker 50:28
Oh,

Scott Benner 50:31
I always I don't always do it, but I do it a lot. And it's because I'm the one involved. Do you think that's more why you're the one that goes up? Because it's still your shift. Like for, you know,

Alina 50:41
if anything, he's the one that goes up, but a couple of times that I have

Unknown Speaker 50:47
really bothers you when it happens. Do

Alina 50:49
I want to watch my reality TV shows and in peace, which one? I like the housewives I like to hear them argue because it's so outrageous.

Scott Benner 51:02
Guys, I'm going to be at the dancing for diabetes touched by type one event on May 18. in Orlando, Florida, if you're in the area, I highly suggest that you come out. There are going to be a lot of wonderful speakers there. I mean, I'll be the best but there's gonna be other people that Chris Rutan fel is going to be there, you know him. He was on the show recently. Anyway, I don't know what everybody else is going to talk about. But I'm going to talk about being bold with insulin, to talk about how to use insulin to get the results that you want. All you have to do is good at dancing the number for diabetes.com to sign up. And by the way, if you make a suggested donation of $10 between now and may 17 2019. Put the word juicebox. In the notes of your donation, you will be entered in a drawing to a win a phone call with me where you can ask me absolutely whatever you want to people when a 45 minute phone call, one lucky person is going to get a one hour call with a 30 minute follow up to great organization be a great place to make a donation. And who knows you might get lucky with the phone call. Unless you don't want to talk to me. And then just make the donation and don't put in the word juicebox. By the way, if you don't want to make a donation or you don't have access to the internet, you can mail in your entry. Isn't that fancy? Again, you can get all that information, you know the dress and stuff like that at dancing the number for diabetes.com I hope to see you in Orlando on May 18 it's gonna be a lot of fun. I got some swag to give away too. might be some magnets or buttons or something like that. You never know. Dancing for diabetes.com

Alina 52:50
Yeah, you know, I'm actually we're both lawyers. So we deal with a lot of heavy I deal with domestic violence victims. So we deal I deal with a lot of heavy, heavy issues. So when I get home, I just want a real uncomplicated

Scott Benner 53:05
my wife my wife says the same thing because my wife's a very bright woman and sometimes some of the things she watches on television throw me off about her a little bit. I'm like, why are we this invested in Big Brother? Exactly. She's like, because there's nothing to think about here. She's like, this is as petty and silly and stupid as anything in the entire world. Amazing. I can laugh at these people and then walk away.

Alina 53:29
Or like teen mom. I'm just like yelling at the girls like How can you be so stupid?

Scott Benner 53:37
I don't watch a ton of reality television. But one time I'm dying to say this on the podcast for some reason. There's one reality show about I think Amish people.

Alina 53:46
Yeah, right. Breaking mamas.

Scott Benner 53:49
I don't know. All I know is I saw it one time

Unknown Speaker 53:51
and I like

Scott Benner 53:52
this girl left like you get this ROM something like there's

Unknown Speaker 53:59
you know,

Scott Benner 54:00
you don't I'm talking about the word right? And so she's away from her family. And someone asks her about how she keeps her teeth clean and so white and she shows them she has like a gallon of bleach and she just oh no toothbrush in the bleach and brushes her teeth and I'm thinking

Alina 54:18
well, that's entertaining.

Scott Benner 54:19
You know what I was mortified and entertained at the same time. I was like that person is brushing their teeth with straight bleach. I know that's not okay. And by the way, I don't know for sure. But let's just go out on a limb and say that's not okay. That's very dangerous. You don't put bleach in your mouth, right? But she was just all like, and as I was watching, I was like, boy, this is fun. I have to admit it was weird and fun at the same time.

Alina 54:45
My poor husband, he just watches sports on his phone. That's half the time.

Scott Benner 54:49
But he sits with you, right?

Alina 54:51
He does out of love.

Scott Benner 54:52
That's a guy. Yes. See, that's good. You guys are still only been together like what I'm guessing now. Seven, six,

Unknown Speaker 54:58
almost Nine years. Yeah.

Scott Benner 55:01
Well, if he hasn't stopped sitting with you after nine years, I don't think he's gonna stop.

Unknown Speaker 55:05
Oh,

Scott Benner 55:07
yeah, he's the best. He's got his phone off to the side trying to watch a basketball game and you

Unknown Speaker 55:13
tell him it's too loud.

Scott Benner 55:16
are you yelling at the teen moms? What's the most egregious thing that teen moms do? By the way?

Unknown Speaker 55:22
They keep having more kids. Oh,

Unknown Speaker 55:33
well, I guess that is their biggest mistake.

Unknown Speaker 55:35
glom on it.

Scott Benner 55:39
Well, now though, they're making money, aren't they? Like, isn't that they're living now being a teen mom.

Alina 55:43
Oh, still quick, really terrible men?

Scott Benner 55:46
Well, yeah, well, who's gonna like destroying children's lives that I know is true. Okay, so I gotcha. All right. So yeah, if you're on a reality show about being a teen mom, I'm gonna go out on a limb and say you're probably not doing like a great job for you. Although they are making money, like I guess it's better than not making money, right? Oh, my gosh, they're having work with different men from them? Yeah, well, I guess if the what the first guy can't afford the first kid, he's not gonna be able to afford the second one.

Unknown Speaker 56:18
Yeah, you

Scott Benner 56:19
got it. So let me ask you a question because, and not to deviate too far.

Alina 56:23
While you're talking about your job. You're an attorney and you work with domestic issues, or battered women? or What is it you work for a domestic violence shelter, and I'm in the legal headquarters, and I help

women with restraining orders and cuts to the divorce issues, to all of the most dramatic things you could think of

Scott Benner 56:44
that is really important and beautiful work you do that that's to be congratulated? Have you always been in that, in that part of

Alina 56:52
law always really enjoyed Family Law just a lot more meaningful to me than like, slip and fall? Yeah, on the street?

Scott Benner 57:02
Hello, how long have you been doing it?

Unknown Speaker 57:05
Let's see. 10 years?

Scott Benner 57:07
Do you get a real feeling every day? Like you're helping people?

Alina 57:10
Ah, I mean, I'm real, I am really impacting their children's lives. So once I've had children, I started really thinking about the children the effect of, you know, abuse on them less also on the on the mother. That's not really politically correct to say, but I'm thinking a lot about the children. And like, what effect it has on them. It's how it strikes you personally, when

Scott Benner 57:33
you're when you're looking at the situation like the moms, that story is terrible, but you It feels, I guess multiplied for the children.

Alina 57:42
It is. So I find that like my duty to protect them. So I'm trying to help the moms make the right decisions to protect their kids.

Scott Benner 57:52
That's really wonderful. Seriously, that's the I mean, I'm assuming as a lawyer, there are things you could do that would probably make you more money. So that is that is really, that is really wonderful of you. And now we're gonna get you to protect yourself a little bit, right? So we don't want you all freaking out all the time wondering about blood sugar's high alert. Moving down. By the way, here's the other thing about the high alert. Can we talk management for a second here at the end, there is data that shows that the lower your high alert is the lower your Awan CLV, because you react sooner to blood sugars with less insulin. So let's say with the high alert pushed all the way up where it doesn't beep until it's 400. And it's left for you just to go back and check and check and check if your blood sugar should jump up sometime in those if those blood sugar jumps up inside that 40 minute window where you're not looking. And it ends up going from where you saw it last time, say at 90 and nice and stable. And all of a sudden that jumps in it goes 120 150 180 it's jumping up straight up and

Unknown Speaker 58:52
down. For sure.

Scott Benner 58:53
Right. And not only is it harder to get down, but you use more insulin to get it down and we use more insulin, you end up low later, which is why I end up saying a lot of times at highest cause can cause

Alina 59:03
Well, we've been using like since I've listened to your podcast. We literally went down from an 8.1 a one C and then two endo appointments later. She's a 6.9. That's and so we're like I'm really utilizing what you say about stopping the arrow and not waiting three hours and Temp Basal micro Bolus saying so if anything, sometimes I feel like I'm too aggressive.

Unknown Speaker 59:31
That's okay.

Scott Benner 59:31
I mean, I understand you'll figure it out.

Unknown Speaker 59:35
And so

Alina 59:38
I really yeah, I really been using what you said. And at first I thought no way that when I first heard your podcast, I thought it doesn't apply to me because I thought the only way you have Artists Agency so low is you probably give her like low carb tasteless food. Because that's what I had seen. Some of my acquaintances do get them like sugar substitutes. And that was like not appealing to me or to my daughter. So when I heard she ate like regular food that was like a big breakthrough moment for me like, Wow,

Scott Benner 1:00:12
well, I'm going to tell you then then moving your lower threshold, your higher threshold down isn't just for you, then it'll be for this. It'll help you with this as well. It will, I think, the sooner you react, the less insulin you react with, the quicker your blood sugar comes back to where you want it. And the less chance you have a low later. So, you know, practice on the weekends at first, but I'd start around 150 and then shoot for 130 eventually. Mm hmm. Yeah, absolutely. Well, we have been close to an hour. And this was very chatty, which I liked. But we didn't really talk about anything specific. So did we not cover anything that you want to talk about?

Alina 1:00:48
You know, just that the challenges of having a child with type one who's very high energy and little and six years old. She, she recently had a fracture in her foot and had to not run around so much. And her numbers were so stable. And it made me realize how much it's just her running around. That is making everything chaotic.

Scott Benner 1:01:14
Okay to get well exercise does bring can help bring your blood sugar down. So when you have less exercise, you could see it be more. I mean, was it stable, but higher?

Unknown Speaker 1:01:27
ranges? Great, perfect.

Scott Benner 1:01:29
Perfect. Well, listen, then tie those kids that kids feed together when she gets home and tell her she's got to sit on the couch and watch teen mom with mommy

Unknown Speaker 1:01:37
and daddy. Yeah. Well,

Scott Benner 1:01:40
I hear what you're saying the activity can really make a difference. And especially when it's not like a sport, right where it's

Unknown Speaker 1:01:47
not planned,

Alina 1:01:48
she'll just randomly run around. And that's what's so hard with a young child. Like I can't predict what she's gonna do next. Exactly. That's

Scott Benner 1:01:56
exactly what I was gonna say is that it's not it's not like it's it's not like it's a soccer game between two and four. It's she's sitting perfectly still. And then all the sudden she's running around like a lunatic. And then she comes back down then does it again again.

Unknown Speaker 1:02:09
Exactly. How do you know?

Scott Benner 1:02:11
Yeah, wow, please. I had kids. Member a little more mellow than that. But they still did crazy stuff that I thought like, Where did that come from? Like, they were just over here. Now they're gone. You know? Yeah. Well, listen, should get a job one day that'll come right down. To take all the fun right out of everything. Oh, my gosh. Well, thank you so much for coming on. And just to tease a little bit, right, I'm gonna, I'm going to be interviewing the first teacher you met at the preschool that went well?

Unknown Speaker 1:02:42
Oh, yeah.

Scott Benner 1:02:44
The first aid right. And, and she's gonna have a little more knowledge about Type One Diabetes now than she did even when she was with Laila. Is that right? Yeah, okay, cool. All right. Well, thank you very much. Thanks also to Omni pod dancing for diabetes and Dexcom, you can go to dexcom.com forward slash juicebox. My omnipod.com forward slash Juicebox. Podcast dancing the number four diabetes.com. To find out more. There are also links in your show notes, and the Juicebox podcast.com. Don't forget, if you make a purchase at real good foods calm and use the offer code juice box, you'll save 20% on your entire order. Let me take a moment to thank everyone. April was the most popular month in downloads ever in the history of the podcast. And that is month over month growth that has been going on for well over a year and a half now every month, stronger than the month before. And that is incredibly important as we come up quickly on what will be the 1 million downloads of the Juicebox Podcast. And when that happens, there will be a celebration. With prizes and giveaways and fireworks. There probably won't be fireworks. But there will be giveaways and prizes and stuff to do. I cannot believe 1 million downloads is coming this year. It's It's insane. I don't know what the most popular diabetes podcasts in the world is. But if I had to bet on which one was I think I know where I put my money. And that is because of you guys. That's because you share the show with other people on social media. I got I see you guys do it all the time. Facebook, Instagram, you're always sharing the show with other people. And I can't tell you how much I appreciate that. It just is the reason that the show continues to grow and flourish. You guys are helping me. I hope I'm helping you. I will definitely be back next week. Oh, you know what to and here's a good enough place to say this. Remember when I said the diabetes protip series with Jenny was going to be 10 episodes. Forget that. Jenny's gonna keep coming back. I don't know how many episodes that will be by the time we're done, but it's gonna be a lot more than 10 thanks so much for Listening and I'll see you next week.

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Scott Benner 4/30/19 Scott Benner 4/30/19

#227 Diabetes Concierge

Katie DiSimone knows Loop……

Katie DiSimone is on the podcast to explain what the heck looping is and how it can change your life with type 1 diabetes.

LoopDocs.org & LoopTips.org

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello and welcome to Episode 227 of the Juicebox Podcast. Today's episode is sponsored by the dexcom g six continuous glucose monitor, by real good foods, and of course dancing for diabetes, you can go to dexcom.com forward slash juicebox dancing the number four diabetes.com or real good foods.com To find out more about the sponsors. Now when you go to real good foods calm and you place an order, use the offer code juice box to save 20% on your entire purchase.

As you well know nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And you should always consult a physician before becoming bold with insulin or making any changes to your health care plan. Today's guest is Katy de Simone. And you're going to want to hold on to something because I think what I'm about to say next is going to take you by surprise. But one of our listeners Gina brow beat me browbeat me online into trying the loop now that it's available for the Omni pod. And so I got Katie on the show because she is about the loop beiste person. That doesn't sound right. She's really entrenched in the world of looping. She's not loopy, she's actually delightful. Anyway, Katie came on. She explained to me everything about looping and I had a bit of an epiphany that I thought it might actually help me help you. So I said, All right, let me try it. So sit back and relax and listen to the conversation that I had with Katie, that made me think. Alright, I'll give this a shot.

Katie DiSimone 1:56
My name is Katie DiSimone . And I work for Tidepool now. And I'm also part of the DIY loop group. So I have a little bit of dual hats in that respect. And so sometimes I try and clarify which hat I have on.

Scott Benner 2:13
Which one are we wearing today? Both one?

Katie DiSimone 2:16
I am imagining probably mostly the DIY Katie hat. Because loop has had a very exciting announcement this week that it now integrates with the Omni pod.

Scott Benner 2:27
Okay, so if you have to change hats, just make an announcement before it happens.

Unknown Speaker 2:31
Yep, we'll do.

Scott Benner 2:33
Katie, I'm gonna give you a tiny bit of background on me and what I think is probably the feeling of more people than should be. And and then we'll move from there. So my daughter is going to be 15. This summer, she has been using it on the pod since she was four. And because I think greatly, because of the things we talked about here on this podcast, her agency has been between five two and six two for over five years. She doesn't have any diet restrictions whatsoever. And we just kind of, you know, figured it out a little bit. But I also want to stay, I want to ride the wave, you know, on the crest of the wave, I don't want it to crash down and then just be you know, going back out to see what I'm like, what's the loop? So I'm excited. I said before that the documentation scares the heck out of me. But I got cajoled harshly by somebody online. And they're like, try it. Just try it. Just try it. And then she finally said to me look by the Reilly link and if you don't like it, I'll buy it from you. So Gina, this episode is for you. And for everyone else. I think we need to just first kind of as simply as possible, let what loop means makes sense to people. Can you do that?

Katie DiSimone 3:51
Yes. Basically, loop does what most of the general population I call them muggles, the people who aren't living with T one D. What most of the Mughal population thinks happens for T one D. That's what loop does is that they see if you explain to a muggle that you have a continuous glucose monitor that provides you information about your blood sugar every five minutes, and you tell them that you dose insulin off your insulin pump based on your blood sugars. They assume that those two systems talk to each other. And that's, as we all know, pretty much not the case on any commercial product these days with the exception of very recent developments, relatively speaking of the 670 and Basal iq, which does half of that equation, it responds to low blood sugars. So what looping does is that it takes that and closes the loop. In other words, your insulin dosing you will actually be based on CGM data without having any Your brain involved in that or your fingers involved in making pump button pushes. So in the simplest form, that's what it's doing is that if at any given time, you would have looked at your CGM data and known that you had eaten and thought, maybe I should give a little bit more, or I should suspend. Or I should decrease my insulin. That's what loop is doing for you. Okay, now we're loop itself with a capital L. As opposed to a little case L of sort of the general concept of looping. What loop app itself does is that it puts all of that into a really simple, wonderful interface of an iPhone app. In all the traditional ways you love Apple products for their ease of use that you can just look at it and it makes sense for what you're looking at. That's what loop is. It's an iPhone app that sits on your app, where you can easily enter all of the information about the food, you're eating the boluses, you want to give, where you're headed, what your settings are, it's basically all moved off of a device that you have to fetch out from underneath your sweater under your dress. It's all now on your iPhone, where you interact with most of your day anyway. And for my kid, the iPhone is almost an extension of her hand, because she's 16. She is on Spotify and Instagram and all of those other kinds of things. And so bolusing from her phone is a really natural place to put her diabetes management. for adult users, most of them are really psyched on the watch for bolusing and entering carbs. It's super discreet. You can do it at a professional meeting, and nobody's going to ask you, are you being rude or somehow ignoring things you can take care of it all on the watch.

Scott Benner 6:53
So most of you know that I'm speaking at these dancing for diabetes touched by type one event on May 10. in Orlando, Florida. If you're in the area and you'd like to come, I don't think it's too late. Check out dancing for diabetes calm, but if you can't make it, dancing for diabetes is like I don't know, auction me off or something. All you have to do is go to dancing for diabetes.com hit that donate tab, make a suggested donation of $10. And when you do that, your name will be like in a hat. I'm going to pull from that hat while I'm down there on the 18th number plot three names two of those names. I'm going to have a 45 minute phone call with you. And one lucky name. One hour phone call and a 30 minute follow up and if you don't want to use the phone, we could FaceTime we could Skype I could be off the window smoke signals. I don't care. Ellison if you don't want to talk to me on the phone, I appreciate that but don't embarrass me Okay, you hear what I'm saying? You guys got to get on there and do this so I don't look like a schmuck expected numbers out of this. The whole like Scott phone call thing Imagine if three of you do this. I'm going to look like an idiot. Alright, so don't do it for me Don't do it for the cute kids dancing for diabetes out you know do it for me do it for me so that I don't look like an idiot to have your name including this opportunity to go to dancing for diabetes.com click on the donate today button between now and may 17 2019 make a suggested donation of $10 and be sure to mention juicebox in the notes. If you don't have internet access or flat out just don't want to make a donation but you still want to submit your name you can do it by mail. I mean God bless if you're gonna do that that's like a stamp and envelope but I don't know what you're even writing there. juicebox nothing and it's got to get there by this I mean do it if you want I'm just saying a lot of work. I hope to see you on the 18th but if I don't I hope we can talk

in its very basic form. All the things that we all sit around thinking are always simplified for us right like I think much like most people like artificial pancreas will come one day and what that means is my glucose monitor will talk to my insulin pump it will make decisions for me and I won't have to think about it. And that really is this it's this in real life. It's it's your right now it's Dexcom right you you loop works with Dexcom CGM

Katie DiSimone 9:10
correct loop works with all the Dexcom CGM Solanas, the g4 has share capability. It also works if you're on one of the older Medtronic pumps it works with the older Medtronic CGM systems. Gotcha.

Scott Benner 9:24
And this is quite literally something that was done. I don't know what the word is. Is it a consortium of people like how do you think of it when you Is it a a cabal? Are you guys which is like what is? What is it exactly like how did this How did this begin?

Katie DiSimone 9:40
The story started long before I ever got here. And it's a web of people in the most simplistic of forms, and it'd be too hard to name everybody who's been involved. But basically people across the nation were frustrated with where the state of diabetes gear Was that it wasn't collecting information for the patient that it was residing in silos separate from each other and not being integrated. And so people started taking actions smart people who had the capabilities of, and I use the term hacking, because that's what comes to mind for most people. But not hacking in a nefarious way. Hacking, as in, I know, my information is in here, I just want to see it, I want to use it to better basically all these people across the country, we're all working on separate parts, that all ended up through the wonders of internet, finding each other, and they all moved closer together, right? So people who are working on understanding that Dexcom and making that more available before share was around, met with the people who were decoding the pumps and people who are doing algorithms, and they all started to form together till eventually, these closed loop components were all close together, okay. Where my involvement came in, was my daughter was on Omni pad for about a year and a half after diagnosis, and was doing great with it. And then she started high school. And when she started high school, she told me, Mom, I want to wear tubes pump. I said, Well, why do you want to wear two buttons? This is the opposite of where most kids go. She said, I'm on my diabetes to be more visible. Oh, okay. And it's an odd thing to request at high school time, but I'll go with it. And I said, Well, I've been stocking the internet. And I saw that these really smart people over here who are working on this open APS system will get on an older pump. And I'm going to have to get an older two pumps. So if I can find that maybe I can get two birds with one stone and automate some insulin delivery, and that might make our lives easier. And so that's what that's how I ended up here was that my daughter wanted it to pump I knew I was gonna have to buy a used one mine as well. But the problem at the time was that the used pump system, this open ups system at the time was really bulky, and would require a lot more than a teenager was willing to give it time and attention to at the time, it's gotten better. So I was looking for small open APS systems. And I was searching the internet frantically going, somebody must have worked to miniaturize this. And that's when I came across the loop, which is a different system than open APS, but conceptually still the same automated insulin delivery based off your CGM readings. So when I saw that it fits on a phone, and it's a really small, sleek form factor, I thought, yeah, I could do that. And when I got there and found where the project was, didn't have a whole lot of information about how to build it. So I spent a lot of time with Google, and putting myself out into uncomfortable spaces of trying to figure out how to build an app onto a phone when I've previously never done that. And with some help of some very nice people on the internet, who answered my questions, and Google, I got it built. And I was so excited. And it worked so well for us that my involvement that I committed to as a kind of pay it forward movement, is that I would write the documentation so that other people could come after me and be successful with it.

Scott Benner 13:25
So you're the translator you

Unknown Speaker 13:27
Yes,

Scott Benner 13:28
you took complicated, technical, almost geeky and weird and turned it into something my brain can absorb? Yep. Is that what's at the loop kit? dot GitHub dot whatever dot loop force? Yeah, even. Is that

Katie DiSimone 13:44
even? Even that I wanted to simplify? So it's, it's loop docs.org lpds.org.

Scott Benner 13:53
Okay, I'm gonna write that with the OC s dot o RG.

Katie DiSimone 13:58
And be intact. It's really, you know, honestly, I totally get it like when you when you come into something technical. From the first start, as soon as you tell somebody, you're going to build an app onto your iPhone, half the audience leaves the rim and goes, I can't do that. And what I promise you is that you absolutely can it is really, really not as as hard as it seems. It's super, super difficult.

Scott Benner 14:24
My understanding here would be that this is not, I mean, you know, this is not a medical device company, right? That's giving you this basically an algorithm that's going to tell your CGM gonna tell your pump what to do with the information from the CGM. So no one can take responsibility for this. If you do this, it's it's on you right now. It's it's do it yourself in the most most meaningful way you are doing it yourself. No one is helping you if something goes wrong, it's all on you. It's a decision you're making on your own. And it says that very much right. I'm just seeing now is the first time I'm looking at At loop, Doc's dot org says you take full responsibility for building and running this system and you do so at your own risk. So if you want to get involved in this right now, Katie is going to tell us now about how to get it set up. Because and I know everyone who listens is going to be thrown off by this. I'm going to try it. And that trust me, Katie, you have no idea. Everybody's just like, no, Scott said he was scared and he can't do it. And trust me, I am scared, and I can't do it. But I think that by having Katie on the podcast, I now have a Sherpa that I can bug. I'm going to figure out how to do this. And then I'm going to report back to you guys how I did it. And that I'm going to report back to you if I like it, and whether or not we're going to stay with or not. Because Katie, while I believe that this is incredibly important for the large majority of people with type one diabetes, I think they're going to have results that they've just never seen before. We already have really good results. So if this improves my life, then I'm all for it. By the way, like I'm not I have no, I have no ego about this, I don't need to be making decisions about Temp Basal increases in Temp Basal decreases, like, you know, throughout the day, I don't care if I would like it to just work. And so I'm super excited to try it.

Katie DiSimone 16:14
Oh, that's that is, you know, you, you just said something that kind of triggered in me a funny part that it took me a long time, we've been looping for two and a half years, roughly. And I've had an evolution and how I appreciate the system when we got on it. And we were fairly low carb only because it was the only way we slept at night, we just you know, we were going through an evolution we were only a year and a half in. It's a teenager, she's changing, we're changing, it was very, very hard. So we got on loop. And it was at the time, we were mostly focused on E one C on blood sugar control and all of that kind of mindset. And then she became a team and she wanted more independence. And I wanted more independence. I didn't want to keep talking to her about diabetes. This was silly. That's just we had a life to live. And what looping has done is, is made me realize just how much potential damage I was headed into with navigating that very complex transition, an independent type one team. And loop gave me back the ability to understand how to let her live her life and how capable she was and how she could do this. And that. The other part it relieved from me as part of the reason I was doing so much help on it was I felt like if I shifted that responsibility that she was asking for even though she was asking for it, I still felt a huge, enormous guilt that I was somehow saddling her with now this enormous responsibility. And seeing loupe work for her literally like a like a, like a nanny like a personal assistant that carries the umbrellas of the rich and famous stars. And you know, the movie festivals kind of thing. Like, who can afford that. That's how Luke has done for us is that it's this umbrella carrying personal assistant for her. That makes that shift over so much easier.

Scott Benner 18:23
Yeah, insulin concierge. Yes.

Katie DiSimone 18:26
That's a great, that's a great term for it. And so from

Scott Benner 18:29
Katie, patent pending,

Katie DiSimone 18:31
I think you should that's your new, that's a new hashtag, you should you should do that. Because it really it redefined how our relationship was and it took a lot of diabetes conversations off the table, which I'm so grateful for. And it wasn't at the expense of good. anyone see results or all of that kind of stuff. It was less effort, less Lowe's, great agencies, and less commerce conversations. It was women and all the way around. Yeah. So we have.

Scott Benner 19:00
So here's where my excitement lies as I sit here and just look at this image that you guys have up on the screen of the loop app on an iPhone. So I'm not even though there are a couple of people who like to say that I have a lot of ego and I I'm brash about like how well we're doing. What I'm saying here is, I've gotten this figured out, my daughter doesn't go over about 151 70 more than about twice a day, she doesn't get dangerously low more than maybe about once a year. You know, we don't get under 70 very often she's mostly between 70 and 120 give a lot of stability. But it's come through these things that I'm now realizing as I'm staring at the algorithm there are these things that the algorithm understands mathematically that I understand in English I don't know if that makes sense or not. And and and so I'm super excited to see the feedback from the app as far as like active insulin, insulin delivery and glucose level. Because I actually think that this app can take me farther in my understanding than I am and I really thought I was about at my peak. Honestly, I didn't think there was much more I could understand about this. But seeing this information, I think I can mine a lot out of it. And, and, and really go on to be able to describe to people who don't have this app, my ideas but in better detail, and maybe more easily detail to understand I'm, I'm getting excited. So this is good. Okay, so let's go through a couple of things.

I needed Dexcom I have that. I need Omni pod because it works with Omni pod. Now I have that and then I need something called a Reilly link and as soon as you say that in the past my brain would go Okay, I'm out Forget it. Right but but but let's let's make it let's take away Riley link. And I don't know did you see spider man into the spider verse by any chance? Yeah tastic movie you really have to make time in that one of the spider man. Men spider man's one of the guys calls something electronic a goober. He says there's always something like this in every one of my problems. I just call them all goobers. So let's call the Reilly link a goober. Okay and so. So the pump has to get information from the CGM and your phone needs to talk to everything. The problem is, how does a phone talk to an insulin pump? It talks to the goober so that's it the goober is the bridge the Riley link is the bridge Don't be scared by it. It's a thing that makes a connection in the future. They'll be there'll be some the I guess the Bluetooth pods right when for dash comes out and then you guys will come out with something where that's right in the app and then the Riley link will be gone at some point, right?

Katie DiSimone 22:02
Yeah, so I DIY Katie says the rail link is necessary because the pump speaks one language and your CGM and phones speak a different language. Gotcha. Your your phone and your CGM are speaking Bluetooth there. They're over there speaking that one language your pump is speaking with radio. And so those two languages need a translator. And that's what the rilink does is it bridges or translates between those two different languages. So what title Katie's hat is saying is that the next phase of looping will be when you don't need that translator. And that the pump is speaking Bluetooth. And the phone is speaking Bluetooth and your CGM is speaking Bluetooth you don't need a translator anymore. And so the phone will be able to directly communicate with both devices. And so tide pool loops development is focused on insulin pumps that have an eye pump designation and Bluetooth capabilities built in.

Scott Benner 23:06
And can I ask tidepool Katie, a question real quick. On the pods all for this right? Like I've spoken to them, they're super excited to have a relationship with tide pool.

Katie DiSimone 23:16
They are incredibly supportive. And kudos to them for recognizing a community need and stepping up and partnering with tide pool to do that I I am as a parent of a team Wendy actively involved in the DIY community incredibly heartened by the commitment they've made with tide pool to bring that forward. Yeah, because at

Scott Benner 23:40
some point, the people understand, you know, let's say that we don't I obviously Katie's not gonna tell me timelines and because you need to be able to hit timelines and their company and all that stuff. But let's just make up a day and say that a year from now, tide pool is going to have this setup so you don't need your grouper and it's just going to talk to the Bluetooth pots right? On the pod might not be ready with their horizon system by then. But you can use you'll be able to use basically tide pools algorithm with loop to do that. If one day or when one day excuse me on the pod comes out with their horizon, you get to decide you get to use their algorithm, then try the loop algorithm and say, Well, listen, I this one works better for me. I'm gonna use this one on the pod completely okay with that, for those of you who are more newly diagnosed and have not been around diabetes for a decade or more, like I have that's unheard of, for a company to just be like, Hey, you know what, if this works better from you, and it's not from us, we don't care just we want you to be happy. That's insane. Like no one says that. Everybody always wants you tied down and locked into their thing. But this is the beginning of a whole new world. super exciting. You should be genuinely jacked up that on the podcast on this because this is just I think the beginning of a lot of good stuff.

Katie DiSimone 24:58
It's a monumental Shift, it really can't be oversold or overstated. How big of a shift this is towards understanding the needs of the community and saying, I believe that the marketplace can absorb this

Scott Benner 25:17
and decide for themselves.

Katie DiSimone 25:19
Exactly. And there's so many people that aren't on pumps. And I think there is a huge portion of people that aren't on pumps not just for access issues, but also for choice issues is that there's not a product that offers them a lot of choice, you're locked into one. And for Omni pod to say, Hey, listen, we support our product, we support this new tide pool, whatever the system is, like you say, they're into the interoperability and you can choose, and it's amazing, it really, it's, it's visionary, and I'm completely supportive of that kind of vision. I think tide pool has that vision to putting on a little bit of a toot their horn here, but really a nonprofit coming in and saying we're gonna take on this, this huge task, it really is a lot of work. Is, is amazing, and we have jdrf support for tide pool and Helmsley family trust is sponsoring a djabe observational study for loop users in the US, that's going to provide a lot of insight into how the system's working for people. So I really look forward to kind of getting this project down the road and showing what it can do for a lot more people who, perhaps like you mentioned at the start, look at building an app on their phone and say, that's just not for me. Yeah.

Scott Benner 26:45
Okay, so we're gonna get to the building part in a little bit. But I want to understand the using part first, I want to talk about the fun part before I talk about the heart. Okay, so, Katie, you don't know me. But when my daughter gets a plate of food, I look at it. I think that's 12 units. And I'm gonna break it down into an extended bolus. I'm gonna do 30%. Now I'm gonna do the rest over half an hour, we're gonna do a Temp Basal increase of 75% for an hour and a half. And that's that. And then if I'm right, great. And if I'm wrong, I adjust. I don't count carbs. I don't know my daughter's insulin to carb ratio. I don't actually believe she has one. I don't believe any of us have one. I don't think there's a static insulin to carb ratio. I don't think there's a static basal rate. I think all of that is some old timey bs way before this stuff was available to us before this technology. I think that was just the best people could do. And so how different is it going to be for me now when that plate of food comes out? Do I still get the guests at how much insulin is or do I now have to count the carbs? Or what's the real like how does it work in a real life situation plate comes out. What do I do? Are you looking for delicious low carb snacks and meals? Well, if you are, look no further than real good foods. You ready? You want to hear what they have newest offerings breakfast sandwiches that come in sausage and bacon. Of course they have the chicken crust pizzas and personal supreme personal pepperoni and personal three cheese. cauliflower crust pizza lovers do not miss vegetable pizza, pepperoni pizza, Margarita, pizza and cheese pizza. All of these come in delightful variety packs as well as one at a time. Have you had an enchilada for lunch lately? How about a pork enchilada chicken enchilada beef cheese or go crazy and get the mixed case. Real good foods also has real good poppers bacon and cheddar, jalapeno and white cheddar artichoke and cheese and pepperoni and mozzarella. Maybe you want the chicken crust pizza, but you don't want the personal size, go to the seven inch. Again cheese supreme and pepperoni. And if you go to their website, they got a pro tips area. Now it's not like our diabetes pro tips. These are pro tips about how to cook the real good foods to perfection. Because real good foods wants you to have a real good experience. Now what could make your experience better? Better than having what I've just described you sent right to your home is having sent to your home and paying 20% less. You'll see other coupon codes out there for real good foods for 10% But please, I told you a good foods for the Juicebox Podcast listeners 20% I demanded it and so it will happen real good foods comm use the offer code juice box. You can also find a link to real good foods in the show notes of your podcast player at Juicebox podcast.com.

Katie DiSimone 29:42
Yeah, so for you it will be an adjustment because I'm conceptually the same statements that you just made all still apply. The difference is instead of knowing your insulin dosing You're going to be refocusing on carb entries, because you will have to use a carb ratio Still, the whole premise of loop is that it makes a prediction of your blood sugar over the next six hours, and it says, This is due to these factors. And one of those factors is your carb entry that you put into it, you say, I'm going to eat 12 grams, this is what, based on my carb ratio, and my insulin sensitivity and how much I have on board, this is where it's going to go. So the carb ratio is still an important part of making that prediction line. That said, it's, it's not an insurmountable shift, because I actually was much like you prior to going into looping is that I knew these things needed extended bezels. And these things needed or extended bullets, excuse me, or maybe these ones get an extra hit of insulin in two hours. Those kinds of things all translate, and instead now instead of saying I need two units here, you get a carb ratio, and you say, Okay, if that previous thing needed two units, and my carb ratio is one to 10, you just do it now as a carb entry instead of an insulin entry. And so will it will be a shift,

Scott Benner 31:20
okay. And on the image I'm looking at right here, there's like pictures of like, I see a taco, I see pizza and I see candy, do I tell it 15 grams, and it's this kind of food?

Katie DiSimone 31:29
Yeah, see, that's the really cool part loop is the only system that does this. So for people who know after, after you eat a pizza, that first time, you know, if you gave everything that you need all up front, you'd be low, and you'd be incredibly high later. So what loop does, it's got this really amazing ability to extend your carb absorption and say, this is going to be a really long, slow burner, I'm going to be fighting the impact of this meal for six hours, or four hours, you can tell it that and the way that as you described, you know your meals, you know that this meal impacts your daughter this way. And it might not be the same for everybody. But everybody kind of has a sense of this particular plate of food kind of does this. And you can tell loop that ahead of time, and it will watch for you. So for pizza, for example, let's say you have 100 grams of pizza. And you know that you need about 60 grams worth of that bullet up front. And maybe 40 grams of that later. And you think of it in terms of your Temp Basal that you send stuff. But you could say I need about two thirds of that upfront, and maybe a third of that whole insulin amount later. Loop actually has that built in. When you tell it Your food is going to take a long time to absorb. It knows that if it throws all of the insulin on board early, you're going to go low early. So it will withhold some of that base, some of that Bullis recommendation, because it's going to keep you from going low early. And by withholding it early. It also knows that you're going to need some later and it will automatically add that as high temp basals as soon as your danger of going low, has passed. So it basically functions as an extended bolus for you when you push that pizza button.

Scott Benner 33:23
Yeah, so I have to tell you that I had I'm so bad with names. But like two years ago, I had that that woman on the girl who like made her own AP, like, you're gonna know exactly who she is. Yes, Dana, Dana on. And I had Dana's husband on, they did him in two different episodes. I don't know why I did that back then. But I thought it was interesting. And what I took away from those episodes where I just asked that, so I asked like a silly question. I was like, so how often does it Bolus she was really most of it's handled by basal rates. And I thought to myself, like it was like, somebody clocked me in the head and the light went off. And I was like, that makes so much sense. And that's it. That conversation helped me, you know, supercharged, but I was already doing, I was like, oh, okay, I'm going to use more bazel. As I look at this, my next question is, does it learn? Does it learn?

Katie DiSimone 34:16
Yes, and no, it doesn't learn long term. So for example, it's not looking at your last day or week and say, Oh, you look like you're running a little sensitive. It doesn't do that. But it does do some near term looks at how it itself has been doing. It looks as its own predictions. So basically, it looks over the last hour. And it says how close was I and if it thinks that it was really far off, it will wait the next 30 minutes of data and say I've been off a little bit. I'm going to help you out a little bit more because something's going on in the near term. And we'll fix that. So in the short term, yes, it looks at its data. But it's very short term in the long term. So there's this one thing you're talking about, like learning systems within loop, there's a really incredible line within loop. That's called insulin counter action effects. It's a big name. But basically what it means is that loop has a screen that you can tap on. And at the end of the meal, it will say you told me this was a 50 gram meal. And actually, based on your blood sugar response, and how it handled it, it actually hit you more like 63 grams. And so you can actually learn a lot from loop. When you look at your food at the end of the meal, you can go, wow, you know what? I see what it's saying, based on my blood sugar's that meal treated me as if I was 80. So you know, nutritional labels aren't right. And sometimes you're at a restaurant and you're like, I'm still trying to learn this meal. How? How much do I give up front? How do I, how do I Bolus, this meal loop will provide that input that impactful statement towards you, or for you at the end of the meal and say, Hey, that meal treated you like this. So the next time you go back to have that meal, you'll be better informed.

Scott Benner 36:07
So this is like a blown up idea behind all carbs aren't created equal. Yes. And it's an extension of what I told you where I say I stay flexible, I put the incident and I see what happens. And then I stay flexible. So in for your knowledge. If I were to do a, you know, do the regular Pre-Bolus that we do you know, as far as time goes, and Arden starts eating and 30 minutes later, I see a diagonal up arrow, I do what I call stop the arrow, I stopped the arrow from from going up, I use little bits of insulin to make a stop. And then the next time I would say to myself and I preach it to people all the time. You look at a meal. And you think oh, that's five units. And then you later use a half a unit to correct it. Well, then next time, don't look at the same meal and go that's five units say to yourself, that's five and a half units.

Katie DiSimone 36:56
You can't see me I have my hands in the air go on. Yes, yes. Yes, exactly. It's dynamic thinking is probably the biggest tool you have in your tool about for successful. I'm

Scott Benner 37:08
kidding. I wish I knew what a moron I was that anything in life has struck me well, is, is absolutely a miracle. But that I figured this out, you have no idea that it was me doesn't make any sense. like it should. This is not something I should have figured out. And I don't know how i think i a lot of times give a lot of credit to writing on my blog for so long. and wanting to help people. And seeing that I had to find out what worked for me. And then I would wait months, I would never share anything right away. I'd like let me make sure this is really valuable before I tell somebody about it. And then I would tell them about it. And I kept building and before I knew what I realized they had like these, like 10 basic tenants of how to keep a blood sugar stable. And I was like, wow, this is like a system. Like it's a way like if I put it all together, it makes sense, you know? And still, I swear I really wish you knew me because that I figured anything out is just hilarious. No, it is it is absolutely huge to have a dynamic attitude. If I always put it as respond to the information you're seeing, not the information you thought. And so if you're seeing that a meal is actually cheating you like 10 grams more than what you thought you had to give more, take that into account the next time and if the people who are listening aren't thinking right now trust what you know is going to happen is going to happen, then you have not been listening closely enough. Okay, so you have to trust that what you know is gonna happen, it's gonna happen. You can't get high every morning at 8am and every morning at 745 think oh, I hope it doesn't happen today. It's gonna happen. Give yourself insulin now. Right? Like so. Oh, I'm not see. All right, okay, let's calm down, because they think we're coming up to the point where I'm gonna get upset and sad. So I see how it works, I see that my daughter will be able to, you know, count carbs and do things like that, that I also, by the way, believe holy, that people eat mostly the same thing over and over again. So it's not like you're counting carbs forever or trying to figure out how much insulin a meal is forever. Usually you eat about the same 20 or 30 or 40 things eventually you'll figure out figure them out on Dexcom you want a Dexcom you might not know you want it or maybe you do know you want it one way or the other. You'll want it dexcom.com forward slash juicebox. Here's what you're going to get when you have a Dexcom a GE six continuous glucose monitor, you are going to get information. And as they say information is what do they say about information? There's a saying about homozygous I know there's a saying about information all the time. Well, there's 486 sayings about information. It's not helpful. No, that's not it. Huh? Oh, that's kind of deep. Albert Einstein, but not the one I was thinking of like that one. God, turn DNA is like a computer now. Or maybe there's not a saying about information? Well, I'll tell you what, I'll make one up right now, when you get the information back from your Dexcom, you make better decisions about your insulin. That's all. There's nothing else to say. That information can come to you with the next comment a couple of ways. One way, share and follow available for iPhone and Android. You know, that means sharing follow, like there's an app share, and there's a app, you know, share app follow up. One you probably like the person you love, who has diabetes has to share up and then another one of you, like a person who cares enough to pay attention to their diabetes, that's the follow up. And then there you go, their diabetes does something that goes up, it goes down. It's trending in one way it's trending in the other. It's moving, it's dancing. As you can tell, I'm making this episode late at night. And I'm completely dopey. So just buy a Dexcom dexcom.com, forward slash juice box links in your show notes and Juicebox podcast.com, you will not regret making the jump to continuous glucose monitoring with Dexcom. So here I am. I'm Scott, I'm standing in front of my microphone, and I have ordered my Reilly link, which is on backorder. And by the way, if you know anybody who can help me with that, Katie, I would appreciate if you put in a good word. And it's going to come to me, my goober is going to show up in the mail. And there's other things I could probably be doing before it gets here. Is that true?

Katie DiSimone 41:30
Yes, you can do everything before it gets here. Except actually, you can build the app, you can get other things set up. If you're ready for it. If you're a nightscout user, you could get your nightscout set up, you can you can do everything you can except for turn on the router link and look,

Scott Benner 41:51
okay, and this is not going to get in the way, by the way of my Dexcom share, that's still gonna work fine. Everybody's gonna be able to see that stuff.

Katie DiSimone 41:59
Totally. It's still you still actually use your exact same Dexcom app, your Dexcom alarms are all still the same. Basically, what Luke does is it eavesdrops on your dex comms communications. And so it doesn't interfere with your Dexcom. Okay.

Scott Benner 42:14
All right. So, if you were me, what would you do first?

Katie DiSimone 42:20
If I were you, what I would do first is I'm kind of conceptualize what your game plan is. Number one, is, get your computer up to date. And also kind of let me take one step back on my Instagram account. I do have a loop advent calendar that I did just kind of on this topic, as I was trying to prepare the community with this is coming. And here's a really small, digestible day by day, advent calendar of day one, make sure your computer's up to date. Do you have Mojave Mac OS? I'm kind of explaining what starts to sound like technical stuff, just pay Make sure your computer is up to date. And it has some back Is that right? It does have to be a Mac, yes, it has to be a Mac running what they call Mojave

operating system, which is their latest one.

Scott Benner 43:12
Oh, I see your Instagram account. Look at you, you're delightful Look at this.

Katie DiSimone 43:18
So yeah, so you can run through each of those admins day by day and just sort of take it in tiny digestible chunks, and do each of those. And basically, you prep your computer and and this is the part that looks intimidating on the website. But it's actually not is that each of these are natural stopping points as I've tried to lay out the pages in the building the app section into natural stopping points. And so you prep your computer. Basically, you want to make sure your OS is up to date your operating system and that you download a free app from your app store that comes from Apple is called Xcode. And basically what Xcode is, is like you present that code for the application for the loop application. And it compiles it all and builds it into a nice little package, you plug your phone into your computer, and Xcode puts that app onto your phone. So you're literally downloading the loop code from us online. And you're using a free app on your computer and you press like four buttons, and the whole thing builds by itself. That's how easy it is.

Scott Benner 44:25
Fancy as now Yeah, I have already. Wow, Katie was saying that even though I swear to you, I didn't know she was gonna say it. I've already downloaded Xcode onto my computer. Haha, yes.

Katie DiSimone 44:38
That's step one is you get that on? It's actually a pretty big download. And believe it or not, that's the longest part of building a loop app is downloading.

Scott Benner 44:49
Okay, so

Katie DiSimone 44:50
then I have a cup of coffee and you're good.

Scott Benner 44:52
Okay. And I need a developer. I have to be like an apple developer, right? Yeah. Because Because for everyone listening, I know Am technically making my own iPhone app right now. And they're gonna give you obviously all, you know, Luke gives you all of the instructions and the you know, and the code and everything you need for it. But you have to do that because it remains your responsibility. And yes, right. And in the future, if I, once everything, you know, work in the way we want it to work, but tide pool and everybody's got their own Ks and their FDA clearances and everything like that, I'll just download this app from the App Store, I'm assuming or downloaded from tide pool.org or something like that. And it's gonna go right on my phone, I'm not going to need to be a developer have Xcode or anything like that. Is that right? Correct.

Katie DiSimone 45:35
The tide pools project is basically taking the fundamentals of the DIY loop system, and taking that through FDA approval. So the study is going to help solidify what needs to be done to make that app able to be distributed as a medical device under FDA approval through the app store. So yeah, that's where the that's where the two projects between DIY and type loop start to diverge is that concept of being able to download this on your app store on your iPhone, and what needs to be done to make sure that all the FDA clearances are done.

Scott Benner 46:14
So yeah. So to tide pool, Katie, eventually, this is just gonna be checkboxes and drop down boxes on an app.

Katie DiSimone 46:23
Yeah, what we envision is that you'll, as type Oh, Katie, I'll speak now is that you get to go to your endocrinologist, talk to them about your settings and your carb ratios and make sure that you have some reasonable settings, they prescribe title loop for you, you have your components, and you get to go to the app store with your prescription number and download it.

Scott Benner 46:47
Okay. All right. Let me think. I'm thinking, it's coming in my head, I'm figuring it out. So it's going to look, it's going to look like a lot, but Katie has as a person who's done this, not knowing what she was doing, and getting what would probably be the best expert advice that she could as she was going along, has turned it into the simplest step she could possibly have now, I'm gonna do this and I'm gonna, whenever my Reilly link comes, I'm gonna, I'm gonna be ready. I'm gonna be set up and I'm going to go, and I'm going to try it and see what happens. What is my expectation for a person who lives between 70 and 120? a, like, in my mind, I think my first excitement is going to be sleeping soundly overnight. Is that is that the simplest win that I get from loop the effects?

Katie DiSimone 47:43
Yes, for sure, sleeping through the night is unbelievable. I think I didn't know what I had started missing until I started sleeping again. Good example. Last night, my daughter was out to the movies with their friends and needed a ride home at 130. In the morning, it was a drive in double feature far away. And so I was up until 130 in the morning, I can't even tell you how tired I was. Because I've gotten used to getting a full night of sleep all the time. Now, it really was daunting to have to go back to the olden days of missing hours of sleep.

Scott Benner 48:19
You're making people cry right now you don't realize that but there's like thousands and thousands of people listening and they're like weeping in their cars. And while they're working out at the grocery store and stuff like that. So that's a Yeah, yeah,

Katie DiSimone 48:29
I'm a I'm a different person. When I sleep, I'm a nicer parent. I'm a better spouse. There's, there's like a lot that goes with sleep. Yeah.

Scott Benner 48:36
There's plenty of conversations in this podcast where I tell a story about I was so exhausted at one point, and I didn't know it. And then I went away for a week without my daughter. And about the third or fourth day into the trip. I thought to myself, Oh my god, this is me. Like I remember having thoughts like this. Yeah, you know, like and being clear headed, and that sort of a thing. So that's my, that's my excitement. Can I ask you something? Yeah, say I decide I like loop for sleeping. But I want to just stick with what I do for eating, can I do that?

Katie DiSimone 49:08
Hundred percent. You can turn on loop has one slider, it's super simple. It's called an open loop or closed loop. If you open your loop loop will let you just get the recommendations but not automatically put them in. So it will use your scheduled Basil's just like your normal pump therapy would it would just give you your bezels that you have programmed in and you can choose to deliver the insulin any way that you want to, you can enter the carbs and you can choose your particular bullet sport. So let's say during the day, you want to say you know what, I still am working out my carb ratios. I'm still figuring them out. I just kind of want to do at one meal on a convenient Saturday and see how my settings are but in the meantime during the week while she's at school, I just want to keep our old paradigm until we can get to for example right now. Thinking summer, you know, hey, summer, I'll be home, this will be easier. Absolutely. You can go to school, keep it an open loop, they can enter their carbs, provide whatever bullets number they want and loop won't be taking any extra action. And then when you come home at night, you can go ahead before you go to sleep at night, you can turn on the closed loop switch, just toggle it right over. And it'll be looping overnight then.

Scott Benner 50:25
And so being an open loop would show me what the algorithm is thinking because it would say to me, hey, right here, if I was you, I do a Temp Basal increase of

Katie DiSimone 50:34
Absolutely. Every five, every five minutes across the top, you'll see the recommendation update, and I'll save this is the new basal rate, I think you should set so you'll be able to see if it's greater than or less than where your existing settings are. And you'll see the prediction too, as well. You'll see the prediction go up and down. I think that's one of the first things that kind of freaks people out as they see that prediction. They're like, Oh, do I cheat a low now because it shows in six hours, I'm going to be low. That prediction line is always as if no other actions are taken. And that's the whole thing is that loop is going to take actions to prevent or change what is in the future. So if you see a low coming in six hours, you don't need to treat it right now. loops going to be treating it for the next six hours and staving that off.

Scott Benner 51:25
And so that ever happens. It's just like a time travel movie. In a time travel movie, sometimes they show you what's going to happen in the future. But then the people in the past make better decisions in the future never happens.

Katie DiSimone 51:38
Yes, that's exactly what loop is doing for you is insane. Oh,

Scott Benner 51:41
wow. And Katie, by the way, now you know why the podcast is popular because I can take incredibly complex things and turn them into moron talk that everybody can understand.

Katie DiSimone 51:52
I have tried to do that with loop building instruction. So I think you're I think you're my kind of people,

Scott Benner 51:57
like a seven year old in my mind. So okay, so I also just realized, I might be boring, and people are gonna laugh because I don't think I knew this about myself. I think I'm more of a diabetes geek than I thought I was. Because when you said you could open the loop, and then see what it was thinking. That to me takes me back to back before CGM when I used to test Arden and all these wacko times that my end would be like, why did you test 45 minutes after she ate? And I was like, Don't you want to know what's happening? And she was like, no. And I was like, No, I think we should know. Yeah, you know, like, I'm gonna keep testing. She'd always be like, I don't understand how you're a one sees or like this. But you're showing me all these weird blood sugars that don't make sense. I'm like, because I'm tracking what her blood sugar is doing so I can make better decisions. Yeah, I really think I really think that with six months with loop, I might have to have my head made larger, not for my ego, that one person that left the review, but for my knowledge of diabetes, because I really think this is going to just kick it into another stratosphere.

Katie DiSimone 52:56
It really it's a truth serum, it really tells you a lot about your settings, your understanding how you conceptualize and reacting to things. For example, a lot of people as they're getting used to this are impatient with insulin. They'll say I don't want to wait it out. And they'll rage bolus or or they think the rage bolusing they're actually not even bold enough with insulin, you know, name to say, Oh, I'm so scared of going out having the feedback from a loop constantly telling you, hey, here's what I would do. And here's Oh, by the way, your meal absorbed 20 grams more than you initially told me it would be and lasted. It also tells you the time and took two hours longer to digest than you expected. That kind of information is so powerful to relieving the diabetes burden because it's fine tuning your expectations. And when you change your expectations for going into it and say yeah, you know what, it's okay that this meal choose me as 65 I feel comfortable, something has helped me learn better.

Scott Benner 54:04
Okay, I'm so proud right now. And I don't know if you did that on purpose, or if that was by mistake. Either way. I'm proud. You said bold with insulin, which is really the whole tagline for this podcast. It's that's my hashtag. It came from here. If you don't know that, I'm just thrilled that those words are somehow in your brain, which means it's getting out in the to the shadow sphere. And if you did know that, I appreciate you listening.

Katie DiSimone 54:27
Well, I actually heard that from a podcast interview you had with T when Junebug because she's a good friend of mine for several years and I saw her use that phrase and I thought Yes, that rings true people

Scott Benner 54:43
are scared to dynamically think they'll see the same blood sugar rise the same blood sugar rise, the same blood sugar rise, and yet say but the label told me it should be 10 grams or my endo told me it should be this and stringing that along and, and being a more dynamic thinker and being bold with the insulin, taking the insulin you need for what you've seen over and over again, is really good dynamic thinking. Yeah, I appreciate that. I was just speaking with a mom last night. And I said to her, you have to I said, I know that, you know, I haven't given you any advice here, because I don't give advice. I just pass on my own stories. But I told her, I said, I can give you this one piece of advice. I said, I would stop thinking about all the things that people have told you to do, and told you not to do and just apply a little more common sense this, you know, like, like, stop overthinking it, your blood sugar's high, you need more insulin. That's kind of Yes, I'm down to like, if I see something online, people are like, look at this graph, and I go, and I type more insulin. And then I hit Enter, because I can't I can't explain it any more. We do it here enough. But sometimes I'm just like, how can you look at a 300 blood sugar and think I don't understand what's wrong, I know what to do. Of course, you know what's wrong, you didn't use enough insulin. And so

Katie DiSimone 56:03
it's not going to be it's not going to be the same and it's not going to be perfect, my daughter gets nervous around certain situations and her blood sugar spikes. And Luke doesn't know that's coming. Nobody gave it an announced warning, nobody gave me an announced warning, or my daughter. And so there's ways that you can help correct that faster as well, you can still override and give more insulin and give a correction. There's a lot of information built into loop to help you with that decision making process. If you choose to take that interactive step. If you're the type of person that just says you know what? I'm happy, I'm happy with a little wider range. And I just want less cognitive burden of interacting with it today. or long term, you can let Luke do that as well. It's it has all the information put in there that it will meet you at your comfort level and help you make the most of where you are

Scott Benner 56:59
gonna say something real quick. And I'm gonna ask you a question. What I'm going to say first is for everybody listening who has come to count on the podcast, I just want you to know that even if I do this and stay with it, I think it's only going to enhance my ability to talk to those of you who aren't doing this. So don't worry about that. I the thing I want to ask, Are you comfortable telling me what your daughter's a one C is on loop?

Katie DiSimone 57:20
Oh, yeah, totally. She started loop at 449, I think. And again, we were low carb, heavily intensively, lots of work, lots of communications, lots of texting, lots of lost sleep. So we are working hard. She is now at a five, six, what was our last 156? I think, and she is as high carb as they come has become a vegetarian. So we have no, no like low carb meals ever. And she is completely independently operating and bolusing and doing everything through loop. I have not told her how to split a bolus in, I'm gonna say a year. She is completely handling all of that just by loop recommendations and putting it into a loop. I hope I don't tear up, it is changed everything. I now have the space reclaimed for what used to be diabetes conversations I now hear about her friends at school. I hear about the things she wants to do I hear about going to the beach, and can I go on a date, and I hear the things that I'm supposed to be hearing and they're not laced with. Don't forget to bring diabetes into this conversation. Don't have to do that.

Scott Benner 58:46
Don't forget Did you I start too many sentences with Did you? Or you know, can you tell me or what does the say? There's, there's still and listen, I'm gonna be honest with you. We don't talk about diabetes around here very much. Because we really are. We just have a rhythm. Like I don't know another way to put it. But at the same time, it still happens. And if it could be less, that'd be amazing. And if it's less for me than I imagine it's going to be much less for a lot of other people. I have to say that this is this is the future that I always imagined. I always thought it was going to come more in like 2020 like, right, that was my kind of estimation. And I was always happy with that because I thought well, that's still a couple of years before Arsenal, go away to college, so I'm okay with that. But just the idea that it could happen sooner. It's got me

Katie DiSimone 59:40
It's amazing. I'll give you an example. When my daughter goes to summer camp, we always talk well do you bring lip Do you not bring loop and you know, I realized that sending her to camp with a non FDA device puts a little bit of burden and asked on those camp staffers and you know, so cognisance of maybe we don't lose when we go to camp and certain camps even don't allow it. But our particular camp is supportive. And, but it's always, it's always funny, she goes to camp because she doesn't want to feel different, right? She's got her, her crew, her tribe. And she doesn't feel different around them. But she does feel different. She's perceived this, if we talk about it in April or May, of going to camp using loop because she's worried none of her other friends will be using the loop. And so we have this conversation every summer for the last two summers about whether or not she's going to live there. And every summer, she goes into it telling me, well, I'll probably take it off while I'm there. I'm taking it now. But I'll probably turn it off, because I don't want to be different. And she never turns it off. And she comes back to the pickup station after two weeks away. And all of her friends are around her. And I'm telling you, it's like a little gaggle, there'll be five teenagers with her that I'll go. Katie, can you get us on loop to we want to use it to? And so, you know, I kind of take that, as my bellwether of how good the system is, or isn't, is if adults weren't involved, and parents weren't involved, what would the kid decide to do? Because I think that's a really important aspect is the informed decision making process involving the kid and letting the kid be a part of that? And so when she comes back from Camp, and there's five kids with are saying, um, can you help us? We want to do that, too, I think it's a good sign that the system is well designed and helpful, as opposed to an extra burden that just isn't useful. And

Scott Benner 1:01:34
it makes a lot of sense, can I pick your brain about something else as a, as a person who's obviously given a lot of their time and effort to the diabetes community? I think that overall, that shows the your concern for people who you know, who have type one and people who you don't know who have type one, and I feel similarly. I don't ever have this feel fear. But I know some people do that if you take away the idea of how to manage diabetes, that if the technology is not available, you'll be lost. And I don't talk about that here. Because I think it's silly to make somebody struggle and cry and be upset and exhausted just so they can understand how Bolus works. I don't think you need to do that I have dedicated this podcast to fast forwarding people through that whole process. But I'm now I'm projecting into the future, right? I talking privately and have been for weeks and months with a mom of a little girl who is so newly diagnosed that she's honeymooning to the point where she doesn't need insulin some days. And it's really going on for a long time. And I'm imagining her right now. And I'm thinking I could put this on her. And she would never know all of the tragedy that I've lived through and that so many other people have lived through, like figuring out diabetes. And is that a good thing? Obviously it is. It seems like it is at the onset. But what would happen if that technology like if her insurance changed, or something happened, it was just taken from her? Do you think that she'd be gobsmacked blindsided by what diabetes really is without the technology? Have you ever thought about that? Like, I'm just interested in your in your like off the top of your head thoughts?

Katie DiSimone 1:03:21
Oh, yeah, I think I think people would be if it disappeared from us. For us. Would it be impactful? Would we notice it? Absolutely. I'm giving you an example. We we switched to Omni pods because we were having problems with sites on NEOs and Medtronic. So one day during a particularly painful yet again, canula failure kink kind of issue day. And she had to turn off loop. We were just perfect storm CGM fails, Meo failed, we were playing blind and she had to give herself a shot for the first time in two and a half years almost. And I was away from home. She was home alone. And I said, Can you do it? And she's like, Yeah, Yeah, I think so. And she did. And it was daunting and all of that. But that said, You do what you got to do. And I don't believe in keeping the covers on the couches, and not using the things that are great in life just because something might fail later.

Scott Benner 1:04:36
I don't, I don't like it when there's fear mongering around advancement. And and I think it happens a lot. I think when Dexcom first came out, there were people running around going you're not going to understand your diabetes. And I think there are people that tell people, you know, you have to have a do shots for a year before we give you a pump. I think all of that and I'll bleep this out later. I think all of that is okay. I think that you need to understand how it Insulin works in your body, and then you're good. And it seems to me that this algorithm is going to understand how insulin works on my body. Now, should I still understand it? I should, but I, but what I'm foreseeing in the future is, is that you're going to go on this. And right on the screen, you're going to see what's happening. And you will learn how insulin works in your body without ever having to fumble around with the algorithm is not just going to keep your blood sugar where it wants to be where it wants it to be. It's going to teach you how it's doing it visually. Yes, that's what I'm seeing here. So now, you'd have to translate that back to a pump without a loop or injections, if you got stuck in that situation. But you wouldn't be starting from zero, you'd actually have a fairly fast forwarded understanding of it. You're going to put this podcast out of typo, you're going to need to hire me if I can't get down listen this podcast anymore, because your loop seriously, if flu puts my podcast out of business, Katie, I'm gonna be pissed.

Katie DiSimone 1:05:58
I tell you what it really does. It's like a truth serum are the assumptions that people had about their diabetes? Understanding? This

Scott Benner 1:06:05
is wrong, guys. You're always wrong. Everybody. I'm sorry, can I cut you off? Everybody who sends me an email is like, I think this is what's happening. I'm like, that's not what's happening. You're basals. Wrong. You're like, like, no one ever really knows. Because it's, it's, it's, it's this false idea. And then I had somebody on recently who said this thing that just struck me, he said, you know, if you put a pencil in your back pocket, then you rob a bank. pencils don't cause bank robbery. But yeah, but somebody thinks it does. somebody sees this cause and effect, and they just say, I saw this, then this happened. So that thing must have been the reason why and we make that mistake. So often in diabetes, it's not funny.

Katie DiSimone 1:06:42
It really it's such a true serum is that people get on when things are automated. That means it's using the same assumptions you've put into it. And when those assumptions show, hey, you're trending high, or you're trending low, consistently, people like what but these numbers were set in stone, I these were fine. I was doing fine. And what they don't realize is no, you weren't doing fine. You were you were taking a lot of manual actions to make it fine. Or you were adjusting in other ways that you hadn't realized. And so when it to two wrongs can make a write in diabetes, you can overlook things very easily by having two wrongs equaling the right. Yes,

Scott Benner 1:07:29
there are so many times that people are having a good outcome at 3pm. That's really just from mistake at noon, and they have no idea. Yeah, it's really it really is. Once you see it, it's I joke about that it's a little old of a reference. But once you see it, it's it's like at the end of the matrix when the bullets stopped moving for Neo, and he's just kind of like walking in between them and moving away. Like once you can see it, it's fascinating.

Katie DiSimone 1:07:54
Well, loop provides that visual, that visual interface to be able to see it. So one good example. So for example, let's take your correction factor or your insulin sensitivity. A lot of people have a wild guess at that, but they don't really know and they haven't tested it. And when you see your blood sugar's on an automated system, kind of roller coastering, up, and then down and up, and then down, you're also probably gonna see what I called lightning bolts of Temp Basal. So you'll get a lot of Temp Basal action trying to correct a rising blood sugar, and then suddenly, you'll turn low, and are not low, but you'll start heading down and then you'll come back up, and you kind of get on this oscillation a roller coaster. That's usually because your ISF is, needs to be higher number. So I don't know I'm avoiding using the word weak or strong because people have different impressions of what that word means in terms of where the actual number needs to go. But if you had put in, if you told loop, each unit of insulin will drop my blood sugar 50 points. And you start seeing that roller coaster pattern, that's a really good indication that your your value of 50 actually might need to be up near 70 or a different number higher than 50. Because you've basically undersold insulin to loop, it's actually doing more than it expected. And so some of these things about loops, ability to inform you of your diabetes assumptions are really like strikingly obvious. As soon as you start using it, as you start seeing that you go, Holy smokes.

Scott Benner 1:09:33
That's crazy. Okay, so I have a couple of just like, like fast paced questions here. So, first day of a dexcom sensor in the first few hours, I don't really lean on it for like, you know, I don't want to put a time on it. But until it's right, like until it's soaked in and it's really working. So do I just go into open loop during that time? Is that what Yes? Is that what you you could?

Katie DiSimone 1:09:52
You could No, it's not what I do, but you could, um, my daughter basically usually ends up changing herself Sir at night, which is I think the worst time to change a G six. And so the whole first night, we basically get a lot of false lows or compression lows. And what we have found is that basically, loop still does, okay, it doesn't. And in essence, what happens is that you get some higher basal rates, you get some suspensions, and they all even out over the course of the night to be okay.

Scott Benner 1:10:26
numbers out the kinks and gets it gets you Yes,

Katie DiSimone 1:10:29
yeah. And then when she wakes up in the morning, finally, the dexcom is back on an even path, and everything's fine. So for the first 12, I, for us, it's, you know, it will depend on the person, but for us, the first six hours of a new sensor are kind of jaggedy. And if it's really far up, we can go into open loop mode, and it's no problem.

Scott Benner 1:10:51
Okay? What about different insulins? Do Do people see different? Or does it not like we use a pager? That's gonna be good?

Katie DiSimone 1:10:57
You send me up on that one? Yeah, actually, within loop, we have three different insulin models. So there's four, but three are based on the type of insulin and the user. So there's a rapid acting adult, which is like, no blog humalog. For adults, there's one setting for children. And then there's another setting for fiasco. So um, and then each of those settings basically describe how the insulin curve works. If you after knowing your data and kind of looking at how things work, say, wow. On our particular insulin, we think it peaks at this amount of minutes, that's actually something you can customize within your loop to say, it peaks at this time, we have numbers put in there that are based on the published data of how these things behave, and clinical trials and all of the published data. But if you find that for you, your diabetes is different, you can actually tweak and customize some of those things.

Scott Benner 1:12:01
Okay. And so a lot of it's customized, like for instance, can I pick her target blood sugar?

Katie DiSimone 1:12:05
100%.

Scott Benner 1:12:08
That's the one thing I would just not like, I don't I would I want to sleep more but not at the you know what I mean, not not to say that, I don't know what the, the Medtronic, artificial pancreas, but it's like at 120 or 140, or something like that, like, I couldn't do that, I wouldn't be able to make that decision,

Katie DiSimone 1:12:25
I'd say out of all of the feedback, I consistently hear on the development of closed loop in the commercial market, that target setpoint is, is the real critical piece for a lot of people. And on this one, you can set it anywhere you want. We have people setting it that are ultra low carbers and have a single number target that they really aim for. And there's other people that are doing a much wider range and are so yeah, it's totally up to you what you want to set it up. Okay, is it

Scott Benner 1:12:55
my so my last kind of nuts and bolts? question is, do I tell it when a new pumps going on? Like, how much does it care about how old the infusion set is?

Katie DiSimone 1:13:02
If you're on Omni pod, it keeps the theme, standard change cycle as Omni pod, it will alert you it's well at 72 hours Omni pod tells you this pods done. But at 80 hours, it really makes you change it and says you're done done. And loop has the same things. And you can set a custom notification for when you want it to tell you hey, it's coming up.

Scott Benner 1:13:24
What about this? Here's another I said I wasn't gonna ask anyone not symbols question. I have one more. What if a canula like comes out a little bit? And I'm getting some of my insulin but not all of my insulin? does it know that? What's that? It's not seeing what it thinks it should be saying?

Katie DiSimone 1:13:39
That's a great question. And the answer is no, in a way is that basically it thinks you delivered a whole unit, the kanila actually only managed to get half of that under your skin and absorbed loops calculations will be a little off, it will think that you have more insulin than you do. And so what you can do is there's a couple of different options, you can open your loop until that discrepancy wears off, and you get it all changed and figured out, you can open loop and just go back to normal pump therapy. Or you can enter in a fake carb, where you say hey, I'm going to eat five grams Bolus me for these five grams. And basically you're tricking the algorithm to think your blood sugar will rise because you were eating and so therefore, it will offset some of that it's a more advanced technique and people kind of start using that in those situations once they become a little bit experienced. But that is an option as well to kind of say, Hey, I'm going to need extra insulin that you think is there but what we call

Scott Benner 1:14:45
that stuff ninja level. So yeah, okay, so all right, so here's what I'm gonna do it because we've been going at it for a while and I want to make this digestible for you. We're gonna stop. I'm gonna say thank you. I'm going to ask you, after I get this back when you come back on and talk with After I've been using it for a little bit,

Katie DiSimone 1:15:02
I would love to, I think that would be great. And can I have an ask of you?

Scott Benner 1:15:06
I guess so. But I'm not taking my pants off.

Katie DiSimone 1:15:10
So the the ask is, is that, um, I want to make this system better for everybody else and make sure it goes there, you know is able to incorporate all of these things like soliciting impact feedback. And that jabe loop observational study is a really important part. And it's the best way that people have to pay this board and provide meaningful impact, I would love it if people would take a look at the study and donate their data, it can all be done from home. It's super convenient. It's very fast and easy. And it provides important user information, especially from new users, or like just getting on the loop. You're asked questions about, like, how did the setup go? How hard was it? Are you technical? Are you not technical? How do you view diabetes, all of that's going to paint this incredibly awesome mosaic of what kind of user experiences have been and just kick the system into a better place.

Scott Benner 1:16:09
Okay, so when we've talked about it here, but the next time we talk, I'll give direct, you will be able to give direction instructions to people about how to donate their their data to that. That'd be great. Excellent. Okay, I don't want anybody to worry, I still understand how to be bold with insulin after a day and a half of looping. As a matter of fact, that loop, just like Katie said, is showing me things that I don't think I understood. But I'm starting to, and then I'll be back here to report to you. So whether you want to loop or not loop, or Lulu skipped your Lu. Or just keep doing what you're doing, or do what I've been doing for years, which might be what I'm doing again, I don't know how long we're gonna do this loop thing. We're trying it. I can't do a podcast if I don't understand looping. I mean, it's 2018 Wait, is it 2019? Wait, I mean, it's 2019. It is so late at night here. I'm out of my mind. I hope you found this episode. Interesting. And what Katie had to say intriguing. I certainly did. It got me off my butt to try looping. And as soon as I know what I think I'll report it back here. Huge thanks to the sponsors Dexcom real good foods, and dancing for diabetes. The links to everything you want to know about them are in the shownotes of your podcast player or at Juicebox podcast.com. But you can always go to dancing the number for diabetes.com real good foods. com use the offer code juice box, or of course dexcom.com forward slash juice box. I'll see you next week.

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Scott Benner 4/26/19 Scott Benner 4/26/19

#226 Diabetes Pro Tip: The Perfect Bolus

Scott and Jenny Smith, CDE share insights on type 1 diabetes care.….

I am thrilled to welcome Jenny Smith, CDE back to the show. Jenny will be joining us for an extended series of conversations that focus solely on the management ideas that we discuss on the podcast.

Jennifer holds a Bachelor’s Degree in Human Nutrition and Biology from the University of Wisconsin. She is a Registered (and Licensed) Dietitian, Certified Diabetes Educator, and Certified Trainer on most makes/models of insulin pumps and continuous glucose monitoring systems. You can reach Jenny at jennifer@integrateddiabetes.com.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello and welcome to Episode 226 of the Juicebox Podcast. Today's episode is called the perfect Bolus, and it is installment number nine of my diabetes pro tip series with CDE Jennifer Smith. I'm gonna make this episode ad free, but I'll probably give them a mention here and there, you know, not a whole like big sell, but still, I really love the advertisers. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And the Always consult a physician before becoming bold with insulin or making any changes to your medical plan.

If you find yourself loving Jenny as much as I do, and you'd like to hire her personally, you can go to integrated diabetes.com. To find out more. There's also a link to Jenny's email address right in the show notes of your podcast player. And at Juicebox. podcast.com.

Hey, everyone, Jennifer's back. And we're here today to talk about the perfect Bolus. So that already sounds like a topic that everyone's gonna get upset about when they hear but i think but there's a lot of different ideas here. So Jennifer, what I was thinking was, Bolus is different differ depending on situation, right? You might have a high blood sugar a low you might be falling, you might be rising, you might have a new site. There's

Jennifer Smith, CDE 1:39
exercise, you might Yeah, keep going. Right? You may have just exercised you might have you might be ill you might have your period, you may be coming into having your period, you know, your dog might have eaten the other dog next door and like you're dealing

Scott Benner 1:54
with a little bit of anxiety going and there's a different tick, Good dog, maybe your next door neighbor's dog Jennifer, Has that ever happened in your life? So psychologists say that if you make up something like that, it comes from something. I don't believe that because my my humor is so bizarre that I look back sometimes. And I think, but that was something really strange. I just said does that have any real connection to my thoughts? And I've really looked closely because I've been worried in the past. But I don't think that's true for everybody.

Jennifer Smith, CDE 2:22
I got a chocolate lab and I don't think that that's even in there. Totally not in the nature. So anyway. No, it's never happened, thankfully.

Scott Benner 2:31
So you people have already learned the chocolate labs are not carnivorous. At least towards other dogs.

Unknown Speaker 2:39
Pog, Oh,

Scott Benner 2:41
my gosh, okay, yeah. So anyway, so I want to start with I mean, we're just going to pick one, right? Let's say your blood sugar's where you mean for it to be your bezels are in check, they work? Well, you haven't eaten in a while. It's the perfect scenario, the one that they described you in the doctor's office, the first time you're diagnosed, right? Your blood sugar is 95. And you're hungry. And you're thinking, What am I going to do? So? Ideally, we know at this point, now from listening to the episodes, we have to figure out what our length of time for our Pre-Bolus is. Right? But how do we know? How much to Pre-Bolus? And I think the answer always has to be, I can't tell you, Jennifer can't tell you it's situational, but that you'll learn through trial and error. So but let's make this one general, right, it's a it's a nice balanced meal, you've got some vegetables, some carbs, there's protein, it looks like it looks like a plate from a superfriends episode that the government told you how to eat in the 70s. The food triangle, it's called

Jennifer Smith, CDE 3:47
a triangle.

Scott Benner 3:48
So so if you're a nice steady blood sugar, if if my daughter was at 95, and I thought this was a pretty, you know, average meal, as far as what I expect, as far as impact back from it, I might put in all of the insulin, you know, in the beginning, but I also might even say, hey, there's bread in there a potato that might stretch out the action of the impact of the carbs over more time. So maybe I'll put in, I don't know, 50% or 60%, and stretch it out over a half hour an hour just to create, like we've talked about in the past that kind of blanket of insulin to cover the entire impact timeline of the carbs. I think that the thing to remember is, is that there can't be really a set idea for what that means. Like maybe you'll figure out a meal eventually and say it's 70% and 30% over an hour. You might get to that point at some point.

Jennifer Smith, CDE 4:39
And many people do many people who have pretty consistent intake, or like the same things over and over. But the variables would be around that will sometimes change even near more standard figured out meal.

Scott Benner 4:54
Yeah. And so I think so my first my first step, I'm telling you Any good Bolus, that one that has any chance of working, I think it's a nice simple way of saying it has to have a Pre-Bolus. Like you have to start, you have to start getting the momentum of your blood sugar moving down, so that when the carbs start acting, they move up. So so that's that, to me, that's step one. Now, do you talk about or do you in your own life use combination of Bolus and Basal in situations like this?

Jennifer Smith, CDE 5:29
Ah, in some situations like this, perhaps more often, more often what I do and more often what I eat is Pre-Bolus based on some of the meal content, because some of that does. It does work together things like glycemic index. And also, as you brought in to begin with the where the blood sugar starting, is it coming in standard at your target? Are you coming in, but it's already dipping down? Are you coming in, in target, but it's already drifting high. All of that is where you can also look at Bolus timing, and how much Pre-Bolus you may need. So you know, coming in at a blood sugar of 95 with a straight horizontal line the past hour, awesome, that looks great. But the minute you put food in, that, that blood sugar line is gonna start to change a quick after that, if there's not time for that insulin to talk first to begin with, right?

Scott Benner 6:33
Yep, I hear what you're saying too, about, like, understanding the glycemic load of different like foods, if you have something like you know, using Chinese food, such a great example, because it normally incorporates rice, which stays for a long time and hit you hard, and usually some sugar that'll hit you fast. So if there's something sugary in there, you may need a real, you know, push of insulin in the beginning to combat that initial rise. But that initial rise could get beat up by that insulin very quickly. And now what's left over is the, you know, the rice they can linger in the back, right? It's an excellent, good.

Jennifer Smith, CDE 7:08
So yeah, yeah, yeah, I was just gonna follow with Yes, you could, in that instance, then have the potential for meeting both Bolus and bazel. Potential change, and also where we talk about Basal. And most doctors are like, well, Basal shouldn't ever be used for food or covering anything. Well, we've learned very differently, especially with fat. Fat requires a huge amount of bazel change in the aftermath of eating your typical pizza, or, you know, burger and french fries, or mac and cheese that's homemade, or whatever it might be. Oftentimes, you need 4050 60% of an increase in bazel for many hours after that meal, or you're gonna stay stuck high,

Scott Benner 7:50
right? Or you could end up hitting it with so much insulin up front that you think you've avoided that and then three or four hours later, you start rising, and you think it's for no reason. Right? And it's still that fat. Is it still the fat? Yep. So I like a in what I call karbi situations, I, which is not a word, but

Jennifer Smith, CDE 8:08
hyrecar in our world, in our world, karbi is absolutely a word.

Scott Benner 8:13
So with carbee foods, there's a couple different ways I use Temp Basal, and we talked about it before, but in this situation, if I thought a meal was 10 units for sure, but I wanted it to be spread out more Arden's basal rate being 1.4. I might double Arden's bazel for an hour and a half and catch two and a quarter units that way, and then take some of that out of the of the bottom line, right?

Jennifer Smith, CDE 8:37
Absolutely. Because we get a lingering effect from the bazel. And you get less upfront, but you're still getting the whole bolus you determined you need it. Okay,

Scott Benner 8:46
same meal. Jenny rapidfire, same meal, but I walk in the door from work, and my spouse says dinner's ready, and it hits the table. I can't Pre-Bolus I didn't know this was gonna happen. What do you do? And that's where I'd like you to lay out the idea of overhauling for people here.

Jennifer Smith, CDE 9:09
Yeah, and that's over Bolus thing. Essentially, that's a good Super Bolus, as you can kind of be talked a little bit about before, that's a situation where 100% unless that meal is like a plate of broccoli, in which you would never need a Super Bowl, or Pre-Bolus. right in your typical meal that we're saying we're having 100% of Super Bowl, this would be beneficial, where you actually do take a load of insulin that would be your bazel behind you added on to the suggested bolus for what you're going to eat. And then you may actually knock off the bazel behind so you don't go low later, but you've gotten the load of insulin, the push up front, right. The other option that many people do in that situation too is they take the bull and they may actually turn their bazel off 100% for an hour.

Scott Benner 9:56
Okay to also try to spike

Jennifer Smith, CDE 9:59
right in actly so that they're getting a bolus, they're maybe not quite sure if the food in the bolus, even though it's happening at the same time is going to cause as much of a rise. But they're definitely saying, I know I need a lot more because I wasn't able to give that 2030 minutes before this.

Scott Benner 10:14
Yeah. And, and I think of over bolusing in two situations. So the one I don't have time to Pre-Bolus. So in my mind, the way it strikes me is I now need the insulin for the food for the high number I know is going to come because I didn't Pre-Bolus and some to stop the momentum or stop the arrow, right? And so if I thought the meal was definitely six units, but I thought, wow, there's no way this doesn't go to 250. I Bolus the six units. And I Bolus like I'm trying to bring down a 250 at the same time, right? Well, that's again, listen, we're calling these you know, we're calling these this series diabetes protests. So this is like ninja level stuff. Like you don't don't try this on day one. But at some point, right. On day one, don't go I didn't Pre-Bolus I'm gonna double my balls, please. Right. Yeah, right. But as you're figuring things out, that's a great place to do. As you've heard in past episodes. There's a very famous book called, is it pumping insulin?

Jennifer Smith, CDE 11:13
pumping insulin is john Walsh. And he's the one who lobbies for bowling. Yeah.

Good. Oh, you got you know, you call it something else? Yeah, we call it

Scott Benner 11:23
I call it over bolusing. But I don't know why.

Jennifer Smith, CDE 11:27
No, I was gonna say the other. You know, the other concept that kind of comes in here that you'd sort of just alluded to is, where is the blood sugar going to likely be? And that trajectory, you know, assuming that okay, I might be 95 right now. But if I haven't Pre-Bolus, I could easily be to 50 in the next 30 to 60 minutes. Okay, you're taking that value. And it's looking at the trajectory of where it will probably be, and using that glucose value to add on to the current Bolus. So you're avoiding that really high blood sugar.

Scott Benner 12:00
And what I say on the podcast, which people might remember is I just say you have to trust that what you know is going to happen is going to happen, right? So you can't just pretend this will be the time this doesn't happen. You know, oh, I'll get away with not Pre-Bolus thing today, there's, that doesn't make any sense. It might happen once in a while. But that's some random reason from something earlier. That's not you know, that's not

Jennifer Smith, CDE 12:20
me, I ran 10 miles and don't usually ever do that. And now, look at that my blood sugar doesn't.

Scott Benner 12:26
So now another place to use an over Bolus as a Pre-Bolus is a is a place where this the concept in my mind is the same, the situation is different. What if I've been fighting with my blood sugar all day, and I just can't get it down. It's 200. But I know I'm gonna eat an hour, like it's dinnertime and an hour and I've been, you know, pushing and pushing little boluses little bays or anything, I can't make this 200 move for whatever, maybe it's a site not working well, whatever it is, in my mind, I Bolus the meal. I Bolus the number I over Bolus upfront and create a fall that I then catch with the food. So I reverse. I we're going to talk about this in the next episode. But I reverse the way I think about I think most of the time we consider how does the food impact my blood sugar? How does the insulin impact my blood sugar? We don't often enough think about how does the food impact the insulin? Right. And that's, and we've talked we talked about that in earlier episodes where we put a little, you know, we put a little boy's blood sugar into a freefall and got it by eating at the right time. So all we're talking about any of these situations is timing, right? It's the right amount. It's the right amount of insulin at the right time. And if your blood sugar's 300, and you have to eat an hour from now, well, the right amount of insulin is now and you know, it's it is now and you can't you can't just wait and do your 15 minute Pre-Bolus on the 300 blood sugar because you've lost already. Right? Right.

Jennifer Smith, CDE 13:58
And you know, something that that kind of goes along to with the concept that catching catching the potential drop while also sort of avoiding or taking care of a higher blood sugar. in pregnancy with the women that I work with. It's kind of similar, we actually at some point get to bolusing. That's like a split a split meal where you actually load the front of that meal time with the whole bolus. Yeah, but you only actually eat about 70% of the food now. And you catch the drop about an hour later with the rest of the meal.

Scott Benner 14:29
Interesting.

Jennifer Smith, CDE 14:30
So what you get is not a spike, not going above those post meal ranges for pregnancy. But you also catch the drop on the back end and you never go low.

Scott Benner 14:40
Yeah, that's very similar to how I handle days like Christmas or Thanksgiving. The idea that there's always going to be eating. So I all I'm always Pre-Bolus in the next grazing opportunity, right like that's interest

Jennifer Smith, CDE 14:56
you for holidays is I actually knowing I'm coming into a grazing time period that's going to be a lot less than precise, a lot less. And a lot of little nibbles along the way behind any holiday where I know I'm going to be up hours of nibbling and eating 25% increase in bazel. And then again, I Bolus along the way. And depending on where glucose is, I might nudge that along the way, too. Yep,

Scott Benner 15:23
yeah. Okay, so now, what happens if dinners taking a little too long to make, and my perfect 95 is turned into a 90 that turned into an 80 that turned on 85. And now it's 75. And now, now someone's yelling, dinner's gonna be ready in five minutes. I know that for most people that makes them feel like Well, I'm too low to Pre-Bolus. But No, you're not. And and so you have to get some insulin moving. And you'll learn how much you can do over time. But in the in the interim, it's got to be some subtle, right, you're just you're drifting low. I'm not even talking about FedEx computer, somebody we're talking about diagnol down, I'm just this, this blood sugar just is kind of drifting down. Your Pre-Bolus still takes as long as it takes to eat to excuse me as long as it takes to work. So if you're 75 and drifting down, Pre-Bolus thing right now is not going to make you start crashing down. If that does happen, that was a coincidence. That's not you. Again, the insulin didn't just start magically working like that, right? Science didn't change. So you still need a Pre-Bolus. Now I get if it's a it's a big meal, and you're like, well, I can't put in eight units. While I'm 75 diagnose, you're right, you probably can't. But you could put in some 20 20% of it even. And we do this a lot while Arden's at school because we Pre-Bolus 20 minutes ahead of Arden's meal at school while she's still in a class. I'm still Pre-Bolus if she's 85. So if I give an ardent gets a big bolus at lunchtime, that while she's in school, much larger than most any other times in her life, 12 sometimes 13 units right for 145 pound kid. So I might do a zero percent upfront, and the balance over a half an hour. So it's all kind of getting squeezed in. But it's not all going to come on line and be active right away. It might be 20% up front, but you have to get some sort of that momentum happening again, on the on the action of your insulin, your insulin to be pulling down when the food goes in. Right, right. Okay.

Jennifer Smith, CDE 17:22
And that's important even for kids, I think in what you're doing that is important, especially for little kids, where you're not quite sure. I know a lot of the people I parents I work with, what I don't know how much Billy is going to eat, or Susie is a really slow eater or, you know, today's she might love spaghetti and she'll love it for the next three days. But then she hates it and I prepared it and I Bolus for it. And now what's going to happen, right? You, for the most part kids and teens will always eat as you said a percent. Let's say that you always know they're going to eat 10 grams of something, even if you have to change what it is they're going to eat something for you. Yes. So if you can Bolus for that little bit up front, it's giving insulin again, more action before you put food in.

Scott Benner 18:08
And one of the many, many reasons that Jenny is on the show is because if Jenny wasn't here, that would have been the next thing I would have said. It's perfect. You, you parents of little kids, it's a perfect idea. Get something moving, even if it's a little bit, just get something moving, give yourself a fighting chance. And to Jenny's point, there's an amount of food if you look back at your kids meals, they always eat at least a little bit. And by the way, if they really flake out and don't worry if, as in the case of the interview I did yesterday with a mother who said she was so excited, she put the insulin in, grab some like fast food and drove away and the kid fell asleep while they were driving away. Right? You know, okay, that might happen. It's happened to me, but still a little bit of juice, right? You only put a little bit in all you've done is Pre-Bolus a couple of sips of juice, you don't have to worry about the food. The point is, is that the Pre-Bolus is always important. It's it's Listen, if you're crashing down as the foods hitting the table and you're literally 50 and your blood sugar's falling. Okay. That's your Pre-Bolus. Right. Right. Okay, you're now prepared.

Jennifer Smith, CDE 19:14
Because there's already insulin that's causing the crash.

Scott Benner 19:17
Yes. Something whether you meant for it or not. You have been Pre-Bolus by so long, right? So good. So see that put the food in. And as soon as that stops, right, as soon as that down arrow goes away, it is time to get your insulin in. You absolutely cannot then say well, I don't know. I'm 60. And that seems dangerous. Now what's dangerous is that you've put all that food in your body and it's going to start hitting you the other direction happened to us last night. And I had to Bolus I had to make a significant bolus at a 75 diagonal up blood sugar because I was like, well, this is I know what's gonna happen. Let me get let me stay ahead of it right.

Jennifer Smith, CDE 19:59
I'm the hardest about using CGM now, as wonderful 100% as they are, the hard thing is that CGM do lag in times of quick change. And so if you have been diagonally down and you're waiting for, you know, you want to Pre-Bolus, but you're not quite sure, sure, go ahead and eat as. But as soon as you see that horizontal or a bit of a trend up, I guarantee your finger stick is higher in the sij than the CGM is showing you. You're already at a deficit of insulin.

Scott Benner 20:29
Yes. Yes. The deficits an important way to think of it and you. And this is again, something you'll learn over time.

Jennifer Smith, CDE 20:35
Well, yeah. It's a bit like the first month. Again,

Scott Benner 20:39
not on your first day, right? Yeah, listen to all the episodes of the podcast to really absorb everything, go through the pro tip stuff, and then say to yourself, I and then you have to see it, right, you have to recognize it. There's a way for CGM users, you have to be able to look, there's like a bend in the line. It's hard to put into words, right. But on the three hour graph on the Dexcom, the last three dots on the right side, tell a story about what's happening. And you will get to be able to glance at that at some point and say, Oh, this is heading down. This is heading up, I can tell I know what and so it's not day one, and it might not be the first month. But if what most of you report back in your emails is anywhere close to true for most, somewhere in the three to six month range. This all just starts making sense in a way. Yeah. Early on the podcast, I used to talk about it like in the matrix, when Neo stopped the bullets. But that has become such an old reference at this point. I'm afraid right now there's like a 19 year old going to what what are we talking about? Now?

Jennifer Smith, CDE 21:39
I'm old enough. I totally know at

Scott Benner 21:41
some point, at some point, diabetes makes so much sense to you, the bullets aren't even moving, you can just walk in between them. And so you get there at some point, right? Okay, so I'm low, I'm high, I'm falling like in the end, I think you're hearing. It's all about the right amount of insulin at the right time, just like we've been saying over and over again, a new site is a good example of, I'm gonna put this in here, even though it doesn't sort of fit, but it does fit. And so if you put a new site on, and you find that your sites don't work as well, immediately, once you put them on, or you know, you just have a site that doesn't seem to be as reactive as you're accustomed to. You still have to do what you have to do. You might have to do it sooner, you might have to do it more aggressively. And I know you're gonna say But what happens when that site starts working? Suddenly? Well, then it does. But you can't not be aggressive when something like that's going on. Because then you that's how you end up at 300 all day long, staring at it wondering what to do next. Right,

Jennifer Smith, CDE 22:44
right. I think the biggest the biggest piece of that Pre-Bolus message is unfortunately, really learning. And it's a daily relearn in the beginning of starting the Pre-Bolus. Rapid insulin is not rapid. Rapid is a bad word for it, it's a better word than our regular insulin used to be, which they called short acting, and I'd actually call that longer than short. I mean, rapid is not instantaneous rapid, as they tell you it is it takes a minimum of 15 to 20 minutes to really get moving.

Scott Benner 23:24
Yes. If you don't leave this episode, and in general, this series, believing that understanding how insulin works in your body is the core of this entire thing. You are not paying attention. So go back and start again.

Jennifer Smith, CDE 23:36
When you get a slap on the hand. Well,

Scott Benner 23:39
I didn't go to Catholic school, but I mean, if I did, yeah, well see Jenny's like, I know what happens when I don't listen, someone hits me with a ruler. So now I guess the last piece of this right about this perfect Bolus thing, right is in my heart, it's about remaining fluid. Now, you know, a lot of people are going to tell you, you really have to count your carbs correctly, right, which is true. You can't use the wrong amount of insulin like you know, you can't have a 50 carb meal in front of you and only put in 30 carbs and then act like oh, I don't know why this didn't work that but you know from listening for me and for a lot of people have been around type on for a while like you just I don't think about it as much as carbs. I think about it as units. I look at a plate and I think that looks like eight units to me. But if I'm wrong, and I am frequently for reasons that I don't care why, right like maybe it's a bad site, maybe I missed on my Pre-Bolus maybe Arden sick I don't care why but I miss then I readdress immediately, right based on my historical knowledge of how Arden acts I know that if I see a double arrow up after a meal bolus, I screwed something up pretty big. And I go more insulin. That's when you guys are starting to hear this. I'm starting to see you on online like talking to other people that people are just going more insulin. I'm like, Yes, I know. That's one of the podcasts and so But is she diagonal up, well, then maybe I missed by a lot less so a little more insulin, or I'll try to bump it back down again, or try to just try to stop the arrow. But staying fluid is the rest of it. Mm hmm. 100% staying fluid as the rest of it. And I know that I heard someone say this the other day. And I like the way they put it, that the idea of stacking insulin in a glucose monitor world is not quite accurate anymore, like you. But this person kind of went a little farther and said, You can't, you can't really stack insulin, when you have a glucose monitor on because you're seeing that you need more insulin. Right? I thought, Boy, that's a big idea. I agree with it in totally in theory. But most of you are going to be taught when you're diagnosed, don't stack and so on. And what they mean when they say that is don't put insulin in at one o'clock, and then put more in it, you know, 130, because you're gonna get low eventually. And if you're not using a glucose monitor, that very well may be true. But right, you can't follow it. Yeah. But if you can see your blood sugar, the direction and the speed it's moving in, you'd have to be incredibly insane to stack to the point where you'd call it some sort of a low that would make you incapable of responding.

Jennifer Smith, CDE 26:13
And that's where even you know, in the CGM, one that we talked about, I had mentioned using those event markers. And the event markers can be hugely beneficial now that they also show up right on your screen. So you can actually see, where did I put the insulin and you don't even have to go back to your pump to look at that. Or remember, when you took your injection, if you just mark it, you will know when those injections went in, you can follow the trend line and you see, okay, do I need more? I don't need very much more. I need a little bit more or a lot more, right?

Scott Benner 26:44
Yep, I've been this is gonna get away from this. And we'll stop in a second go to the next idea. But I've been talking to college students a lot through Instagram messaging. And if you just heard that and think oh my god, that's me. You're adorable. It could be any number of you. But but but but this one person just had a long, protracted high blood sugar that wasn't coming down. So finally, I just said, Look, you you have to like, crush this number, and crank up your bazel like do a Temp Basal raid for hours, like six hours, let's do 30% more and put in however much insulin you think is going to bring this down. And it took most of the afternoon but they got there. And then just with that idea of oh my gosh, I don't have enough basal insulin. The next day, here comes the 24 hour graph hundred and 30 blood sugar, because they're trying to live with not enough base. So as much as as much as we're talking about the perfect bolus here. Remember, you can't make the perfect bolus if your basal insulin is wrong. Correct, right, you'll never be able to. Because you'll always be replacing bazel that doesn't exist. Or if your basal is too high, you'll be causing lows and thinking oh, this is the bolus when actually

Jennifer Smith, CDE 27:59
it might not. Or if you are trying to really be aggressive with your Bolus thing. Then you're Bolus thing and Bolus thing and then finally Bolus thing too much. And that actually brings you back down. In which case then you might be eating, you're sending yourself back up. The Basal isn't enough in the background. So it becomes a roller coaster.

Scott Benner 28:16
So infuriating is this is going to be and then we'll we'll end up this episode. But if you're bezels, right, and you haven't had insulin or food for a few hours, your blood sugar's like 80 it's sitting right there. That's how you know you have your bazel right, and

Jennifer Smith, CDE 28:31
so be stable,

Scott Benner 28:32
right stable. And so and so if you stability at 140 a little more might have stability at 120 a little more you that's how you can learn to play with it, but I'm just telling you that if it's if it was, you know, as intended, you know, by the heavens, then your blood sugar would be around 85. without food or insulin. It's not always going to be like that. I'm not saying that. But I'm saying if you're that far away from that number, you've got work to do on your basal rates, right. Okay, so we're gonna wrap this one up, and then record the next one right away. Okay. Thank you, Jenny for taking the time to be here on the podcast. Don't forget, you can hire Jenny at integrated diabetes.com. Her email address is in the show notes of your podcast player, and at Juicebox podcast.com. As always, I appreciate the support of the sponsors Dexcom on the pod dancing for diabetes and real good foods. You can save 20% on your entire order at real good foods calm by using the offer code juice box. This was the ninth installment of my diabetes pro tip series with Jenny Smith. There are more coming in the beginning I call it like a 10 part series. It might go longer. What do you think of that? If you're enjoying the podcast, please go to iTunes and leave a rating and review. The Five Star kind are the best where you say nice stuff. The better the podcast is reviewed on iTunes the more searchable it is for new people looking for Type One Diabetes support. Thank you very much. For those of you who share on Instagram, Facebook and privately, I love that you guys are telling your endos and your friends and anyone who will listen about the Juicebox Podcast. It's helping us grow. I appreciate it immensely.

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