#229 You Sank My Battleship

Hey there Eliza……

Eliza has type 1 diabetes and a lot of people who love her.

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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 229 of the Juicebox Podcast. Today's episode is sponsored by real good foods Dexcom dancing for diabetes and Omni pod. To find out more about the sponsors or just to see the Juicebox Podcast online you go to Juicebox podcast.com You can also find links in the show notes of the podcast player you're listening to right now. But if you'd like to be old school about it, go to dancing the number four diabetes.com my on the pod comm forward slash juicebox dexcom.com forward slash juice box or real good foods calm and use the offer code juice box at checkout to save 20% on your entire purchase. Let me just tell you very quickly two things. First of all, of course nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making changes to your medical plan or becoming bold with insulin. And speaking of being bold with insulin, I've done a bold thing myself tried to make a little less work for myself I've combined merge together in fact, the two Facebook pages one for Arden's day, and one for the Juicebox Podcast, they've been merged together into one Facebook page called bold with insulin, please make sure you're following. I don't want to put a challenge out there. But to you Facebook users, I do get a lot of activity on Instagram. Not as much on Facebook. So I mean, if you're feeling competitive with the Instagram folks, get in there. Also if you're considering asking me to your event to speak, my calendar is starting to fill up for 2019 now's the time go to Juicebox podcast.com. Scroll to the bottom. Click on contact send me a note. Today's guest was told about the podcasts by a friend. She listened to it and didn't particularly like it. But guess what? spoilers. She feels differently now.

Denal 2:06
Prime Minister now I am the wife of Nicholas and the mother of three kids. I have Eliza, who is almost 10 years old. And Henry and Alison, who are three and a half year old twins. And my Eliza, my oldest is my type one diabetic.

Unknown Speaker 2:25
There's a lot of numbers there. We get a pen. analyze a pipeline, a couple of twins we've had we don't talk about except the wonder if they're feeling completely left out.

Scott Benner 2:36
How long have you guys been married?

Denal 2:37
We've been married for 20 years, almost 20 years.

Scott Benner 2:41
So let's start a little bit with Eliza story. She's how old again?

Unknown Speaker 2:44
She is almost 10 almost 10

Scott Benner 2:46
diagnosed.

Denal 2:48
When she was three and a half the same age the twins are now No kidding. Okay, so

Scott Benner 2:51
you're you're coming up on seven years are right there.

Denal 2:54
Yeah, we just passed six in August

Scott Benner 2:57

2011. you're rolling along? You've been married for quite some time already. Wow. Yeah. And so what happened there with the I appreciate a good we didn't just get married and have a bunch of babies right away stories. What are you guys doing in the beginning

Denal 3:10
world domination? Yeah, that's what we're aiming for. No, we we actually wanted kids right away. But that did not seem to be in the cards for us. And so we we tried a number of different things. And then we had the opportunity to adopt Eliza. And so we adopted her and became parents.

Scott Benner 3:31
That is what I was getting. Excellent. Yeah. So I'm adopted. Also.

Denal 3:36
I know, I think that's awesome. You want to know something else you have in common with a lot of our friends? Yeah, you're both from Pennsylvania. No kidding. Wow, that's

Scott Benner 3:44
really cool. Have I ever told that whole? Like, I never really told my whole auto adoption story. It's such a bizarre story

Unknown Speaker 3:50
that I'd love to hear. I love adoption story.

Scott Benner 3:52
You want to start with that one? I'll give you the two. I'll give you the two minute version Ready? Okay. A man in South Carolina has a wife and nine children. All right. The children range from 18 years old all the way down to whatever. He gets up one day and decides he's going to go to Pennsylvania and shack up with a different woman that isn't his wife. Oh, wow. And he leaves when this episode is over, and by the way, there's a little bit of bonus conversation at the end. Just some chit chat between me and do now. Anyway when it's over, even if like you have to pee, I don't care, skip that. Go right to dancing for diabetes calm. That's dancing the number for diabetes.com. Now if you sit down to pee, you can do these things at the same time. The wife and her nine children don't like that so much. So the wife packs up the nine children moves them all to Pennsylvania, and goes about getting this man back in their lives. That process takes enough time that her oldest daughter got time to find a job. Meet a boy get pregnant. Wow, have a baby that ends up being me. Wow, the mother does not get the husband back does not allow my birth mother to bring me back to South Carolina puts me up for adoption there. Wow. years. Isn't that nuts, years and years and years later, my wife makes me reach out and try to find out something about my birth parents because we're having kids and she just wants to know the medical side of it. And I am not. I'm not one of the like. I feel like sometimes adoptive people fall into buckets. I'm not I'm not overly bothered or bothered at all about being adopted. So I never even occurred to me, but I did it because my wife asked. So we find an attorney is able to find a sister of the of the mother of my mother. I call her on the phone. And she goes about telling me a story that her mom made her sister give the baby up for adoption, which was very weird to hear yourself talk spoken about like that in the third person, right? And Mater give me away. She said it caused her to become incredibly depressed. She couldn't, couldn't shake that depression her entire life, became morbidly obese, shut herself out of it in her 40s tried to get gastric bypass surgery to get her life back together and died on the operating table. Oh my goodness. Isn't that insane?

Unknown Speaker 6:21
That's so sad.

Scott Benner 6:22
It is incredibly sad. A few moments later, she said if my younger brother calls you about money, and I was like, well, I gotta go. And I. And I've never spoken to them again since.

Unknown Speaker 6:32
Wow.

Scott Benner 6:33
Wow. Now you've now these people were from like, they were literally like, lived in the kind of woods in South Carolina. And you've listened to this podcast for a while. How long? Do you think I would have made it there?

Unknown Speaker 6:45
Yeah, no, I don't.

Scott Benner 6:47
I don't think so. Someone would have accidentally shot me during hunting. At some point. I'm pretty sure. So anyway, I feel pretty lucky because I quite enjoyed my life. So I'm glad it went this way. And I I just I don't know, I've never told anybody that before. So there you go. That is that bizarre story that a person told me on the phone like 10 years ago, as I was my wife standing in the doorway going What's happening? I'm like, it's hard to explain just

Unknown Speaker 7:15
that is really crazy. You know how

Scott Benner 7:17
Eliza ended up with you? Do you know her path?

Denal 7:19
Yeah, her path art. It's a little craziest. I'll try to tell the shortest version of it. We we had been married for about 10 years at that point. And we had gone through some, you know, infertility stuff. And we had started thinking about adoption. Now my younger sister has adopted her oldest child. And and so she had gone through that process before when a friend of hers that's a mutual friend of ours actually called her up and said, Hey, I have a family friend who is looking to place the child for adoption is denault. Thinking about adoption. They've been married for 10 years, like, you know, I'm just making some assumptions here. And so she had contacted my sister, my sister was like, Well, let me do some things on the back end, and figure out if this family is serious about placing, because that's a really hard thing to go through. The only person I've ever told that I was considering adoption was my sister. And so she did all this back stuff, you know, like called the family made sure they were really serious. And then we got a phone call from them saying, hey, are, you know, we are thinking about placing for adoption? And my, you know, my sister was involved in that. And so yeah, it was through this really random string of people. We hadn't even finished our paperwork yet for adoption. We rushed it through. And they live in the other in Pennsylvania. She was a very young girl. And she was raised by her grandparents who were really old and just said, like, you know, we're, we're not gonna be able to raise another baby, and you're not ready to do this. And she agreed, she knew she wasn't ready. And she wanted something better for her daughter that was about to be born. Now, when Eliza was born. She was born in December. And we fully expected to have her place with us then. And the birth mother backed out. And so we were like, my husband was crushed. For me. I was like, Well, I think this is just kind of the impetus to push us to get our paperwork done, because we were kind of dragging her feet on it. And then all of a sudden, next thing we know, we got a phone call three months later, and she was like, I, I'm ready. Now. She, and I'm sorry, can you come tomorrow? And I was like, Oh my gosh, I had nothing.

Scott Benner 9:29
I'm just laughing because apparently it takes about 90 days of not sleeping for a teenager. I really,

Denal 9:37
honestly, like that three, like if you remember when your babies were tiny and three months is like that tipping point, like, right. After three months, they kind of start getting a little bit better. And it gets a little bit easier. So I'm like, I'm so glad she did write

Scott Benner 9:50
that. Yeah. What if she would have made a little longer? Right. And she might have?

Denal 9:53
Yeah, I mean, I think that that it was, it was the right thing for her to do. I mean, she really wasn't in a place. She hadn't graduated high school, she never did end up graduating high school. And her grandfather ended up passing away right after that. And so there was no other, there was no other way for her to really be successful. Well, I

Scott Benner 10:12
can't imagine. I can't imagine anything more difficult. I mean, I've, you know, I've considered it for myself. And now I know the story that you know, of, of my birth mother sort of being forced, basically to just said, Look, we're not taking we didn't, we didn't. I mean, can you imagine when you stop and think about it, you and your nine kids leave to go get your husband back and show back up with not just your you know, your cheating husband, but a baby right now, like, at some point, the apparently the embarrassment line hit her mom, and she was like, I can only go back to South Carolina was so much, you know, baggage. But, but where it really hit me about how difficult it must be to let go of a child like that. Now, I think in Eliza's case, or mine, there's love behind that, like you said, there's absolutely no idea of I can't, I just I know I'm gonna mess this up. And let's not put this baby in that situation. Where it really, really struck me very recently was my father. So not my birth father, but my adopted father did eventually leave my mom when I was 13. And when my brothers were eight, and three, yeah, well, so we have 13, eight, and three, and my dad left. And he never really was all that involved with us throughout his life. And he passed away. And you know, we saw him a little bit towards the end. And that was it. Where it really struck me was after I dropped my son off at college, and I was driving home and couldn't stop. Like, I wasn't full out like, like movie crying. I just, I couldn't stop like the tears from flowing out of my eyes while I was driving. And I left my son in possibly one of the best situations that an 18 year old boy could be in. And I thought, if this is this difficult for me, why was it so easy for my dad? Like, that was the first time that struck me, I was like, oh, gosh, he really did not care about us all that much. Because, like, at least that's how it felt to me. Because, you know, because how could it have been this easy for him? You know, and that was the part that's where it really struck me. I was like, if it's this hard for me, just to leave my son two and a half hours from here, knowing I'm going to see him next week, then what was my what was going through my father's head when he was like, Okay, I'm out of here. You know, like, that was really, really a strange thing for me. But anyway, I don't know about you, but sad conversations about adopted children. And the families that had to give them away, make me want to eat low carb. So that's why we're going to talk about real good foods calm right now. Now, I don't know if you understand this or not, but real good foods calm when you use the offer code juicebox. at checkout, you In fact, will save 20% on your entire order. A couple that with the idea that real good foods has free shipping. And we're starting to look at quite a little deal here. Now I got a note recently from someone from Arizona who said, You know, I wanted to order but I don't know about the warm weather and shipping frozen stuff. Do not worry real good foods, knows how to ship frozen. They're amazing at it. As a matter of fact, just yesterday, I got a shipment in the mail of some of their new food offerings, which I'd like to tell you about right now. Of course, you already know about the breakfast sandwiches, the chicken cross feeds, the cauliflower crust pizza, the enchiladas poppers and chicken crust pizza. But have you heard about the brand new chicken alfredo and marinara and cheese? Italian entrees. Oh, oh, you have not? Huh? You just heard about this. Now, you're probably gonna want to go to real good foods calm and check it out. When you get there. And you see those entrees. And the brand new breakfast sandwich is looking so good. Just you know, clicky clicky into the cart, put them in there, throw in some cauliflower crust pizza and a couple of poppers. And when you're done and you hit and checkout real good foods once you do use the offer code juice box, and when you do, it will take 20% off of your order real good foods comm use the offer code juice box.

Denal 14:09
You know, we felt that a little bit when we had Eliza placed with us you know that very next day. I was like, Oh my gosh, she feels like my daughter. Like this is my child. I felt an ownership in a and a love for her that was so strong. And for the next year and a half we actually battled the birth father a little bit and the idea of her being taken from me I was like, but she's mine. You can't take something that belongs to me, you know? So I understand. Like, I can't imagine just walking away from that.

Scott Benner 14:39
Okay, so no one knows it. But you were nervous when we started. Are you nervous now I made you comfortable.

Denal 14:45
I'm coming down. I'm coming down.

Unknown Speaker 14:49
So

Denal 14:50
I'm a high strung person. Anyway, Scott. So this is gonna be nervous the whole time.

Scott Benner 14:55
I think that a lot of people I've interviewed in the past just heard you say that. thought, Oh my gosh, me too. Okay, you have to have enough energy and confidence to reach out to be on the podcast, right? That's, that in itself is pretty difficult. So you go through all of this and get a baby. And then three years old, three and a half years old and she develops type one. Now this is interesting, because you're you have no, it's not like any of the family history that you have. Right? not worried about it. Right? It never even occurred to you. So how does it present?

Denal 15:29
So it happened really fast. And for some reason, I think so we didn't know the birth father had type one. And but that was, it was a very strange way that we kind of knew that. And so that was kind of in the back of my mind, although I never googled the tsys. I never looked into it. So I knew nothing about it, other than I had an acquaintance A long time ago that had type one. But I knew enough that when some symptoms started presenting themselves, like, I figured it out rather quickly. And within a week of her, I never googled it, which is stupid of me, because within a week of it, I knew that's what it was. But I didn't take it very seriously. I thought it would be like one of those things where, you know, you went into your doctor, and you're like, Hey, I think she has diabetes. And they're like, okay, let's give you the name of a specialist. And you'll go through that specialist will take three months, and then you'll get things figured out. And I had no idea. So you know, she's wedding suddenly wetting the bed, and she's drinking a ton. And she's so hungry. And I was like, Oh, my gosh, you know, what is going on? First, we start cutting off water, then we start, you know, then it dawns on me like, this is this is diabetes. And so we had an appointment already scheduled for preschool. And so I was already going to see the doctor. And I thought, well, I'll just ask about it then. And, and so I took her into that appointment, and it was a nurse practitioner, and at the end of all of the things, you know, checking blood pressure and all of that she asked, Is there any questions that you have? And I said, you know, we might want to check for diabetes, because she's been peeing a lot. And she's been drinking a lot. And she kind of looked at me with this look like, Did you really just wait to the end of our appointment for this? And I was like, You know what, yeah,

Scott Benner 17:10
she could have an infection from a splinter. That's where I'd like to start. Yeah. Did you in the back of your mind? Did

Denal 17:16
you just not want someone to tell you that she had diabetes? I guess I just thought it was gonna be something like, you know, all the other times that you ever take your child in for something, you know, like, she had a speech delay. And so, you know, we took her in, and they're like, Okay, well, you're going to call this specialist. And then three months later, you'll have an appointment, they'll tell you what to do. And, you know, it wasn't, I just think it would be like that I it wasn't that I was trying to deny it. I just didn't know so serious. And so when she said, Okay, we'll do a quick urine check. And, you know, and then came back in the room with like, this pale face, and she says, she has ketones. And I was like, I don't know what that means. And she said, it means that she has diabetes, and you're on your way to the emergency room. And I was like, that's when the gravity of it hit me like the emergency room. Why? And I was like, Can I stop by home. And she's like, is home on the way to the emergency room. And I was like, kinda, and she's like, you can go grab something, but we've already called them they've got a room for you. And I was like, Oh, so I call my husband and I was like, We're on our way to the emergency room with Eliza. And he's like, wait for me. I'll be there in a few minutes. And so he works in DC. And he jumps on the metro and comes home and at home. I'm sitting there, you know, waiting for him. It's about 45 minutes for him to get there. And I'm trying to explain to my little three year old what's happening to her. She's really calm about it, but she's hungry. And they told us not to feeder. And, and I'm like, well, you have diabetes and my understanding of diabetes at this point is you can't eat sugar, almost like it's an allergy. You know, like, you're going to be you're allergic to sugar now. And so she starts asking me questions. Mom, can I still eat pickles? Can I still eat olives? These are her favorite foods. And so I grabbed a jar of pickles out of the fridge and a great jar of olives. And I'm not looking at carbs because I had no idea. No idea. But I am concerned about sugar. So I'm looking at the ingredients. I'm like, oh, sugar, and then she goes Mom, can I have honey? And I was like, I don't know. Let's look and so I grabbed the honey. And did you know that there's no honey? There's no sugar in honey.

Scott Benner 19:22
Plenty of carbs. Just no actual.

Denal 19:25
Like you can have honey and I'm like I'm converting all my recipes. Now to have honey in your mind. Right? Yeah, yeah.

Scott Benner 19:34
Understand, I imagine that this episode is called pickles and honey, right? We're going from here but but so so so you're so that's By the way, bizarre and beautiful. At the same time we were you having this like, was it so the hunger. That's what I want to talk about. I remember the day before we figured out Arden had type one. She stood with this like thousand yards. They're on her face in front, in front of a plate of food eating it. Like Did you have you seen the original Jurassic Park movie? Yeah, I know when the two little kids climb over the fence, the little boy gets electrocuted. They end up back in the in kind of like the way all the food is. And they stand there like, like monsters and shove the food into their mouth. Yeah, that's how hard it was eating sheet 1000 yard stare like she'd just been electrocuted. And she was just reaching at the plate grabbing food with her hand and shoving it in her mouth over and over again. And I was looking.

Unknown Speaker 20:28
I couldn't see her full enough.

Unknown Speaker 20:29
Yeah, right.

Denal 20:30
I know. That's exactly I was like, you're eating more food than I am. I'm a full grown human. And you're this little tiny three year old and you're just shoving it in and that in the amount of water to it was like, Oh my gosh, No wonder you're wetting the bed. Knock it off. You know,

Scott Benner 20:44
wherever you look back. Arden's eating all that food, like you said massive amounts of food, not eliminating it and losing weight. Yeah, right. It was like there was a, you know, like an alien enter. Which there was that

Unknown Speaker 20:57
right? So

Scott Benner 20:59
Well, okay, so you you and your pick? Did you just tell me where the pickles in the car with you while you're driving?

Denal 21:05
They were not I should have. Now I look back and I'm like, I wish I would have given her some food because she was so hungry. And they wouldn't let her eat until like four hours later. And the whole time. She's like, Mom, I'm hungry. I'm hungry. And a hungry child, to me is like the worst thing in the world. And so to have her be telling me she's hungry made me feel just so sad inside. It did. And so, you know, then the doctor comes in and bless our doctors hard. She's an amazing woman. She comes in and first question Eliza asks is can I olives and pickles and honey? And our doctor said, Of course you can. You can eat anything you want. You're going to figure out how to cover those carbs. And like this weight came off of my shoulders to have like, Oh, she's like, nothing's going to change. You just have to cover the carbs. And I was like, oh, my goodness,

Scott Benner 21:51
nothing changed and nothing changed at all. Everything's exactly the same. Right? It's all

Denal 21:54
the same, right? It's all good. You know, I mean, obviously, like then we had a lot of discussions about what would change but it was not like, Hey, no, you can't have these things anymore. Your life is going to continue on and you're going to be able to eat these foods, you're just gonna have to figure out how to how to cover those carbs.

Scott Benner 22:09
So So what did they send you home with to do that job?

Denal 22:13
We were on MDI and on fingerprick for a long time, Hema log and Lantus. And then we, the push to get a pump came because Eliza said to us at one point, I don't like shots anymore. And so I started looking into pumps. And then they the insurance decided that they wanted to change us from lantis to love Amir, and it was going to change to from one shot to two shots a day. And I was like, I can't now tell her when she's saying to us no more shots. I can't shoot another one. Yeah, add another one in there. And so we looked at pumps, and we did land on the on the pod. And we have never looked back. We love that pump so much. Arden needed an injection the other day, which hasn't happened in a really, really long time. And I know she looks right at me like well, what are we doing? Oh, yeah,

Scott Benner 23:02
I was like, we just have to just inject this. I'm checking, trying to check to see if her her site was not doing what I thought it was doing. Or if it was her period coming in. It was it was her period coming this site was fine. So, but she still she looked at that needle like Hey, buddy, I noticed you're walking towards me with a needle.

Denal 23:22
Yeah, you should see Eliza okay. So we did MDI for like, two, three years, and she was fine. But you should see what happens now when a flu shot has to happen. We have to hold that girl down to get her a flu shot. like Oh, girl, I don't know why you're being so wimpy about this. You're a tougher golden this

Scott Benner 23:38
absolutely happened to art in the same way she was she did injections from two years old till four. And you know, never batted an eye at it. I mean, after the beginning when you had to, like kind of sit on her once in a while. But I mean, once you got into the role, it was no big deal. But then she didn't do it for years. And then you know, go to the endo every he'll get that blood test once a year. And you know, and and nothing, no problems, no problems. All of a sudden, she's about nine years old. And she just went off like a like a, like a crackhead ninja in the office. She was like up on the table like kicking and had her arms go and then she was like, get away. And we did I did take her out of the room like what what's happening? And she's like, I don't want her to take my button. Like when we do this, like, like, What are you talking about? Like, you know, like, and I couldn't I take her in another room. calm her down. The nurse pretty much had to like armbar to get it finished and the next couple of blood tests after that. progressively got better, but they were bad for a while.

Denal 24:38
Oh, yeah, we've had to bribe her with so many things just to be able to get her to get that blood drive done. And oh my gosh, it's crazy. And I had no idea how strong her legs were until I got kicked by her. That girl's got some strong legs.

Scott Benner 24:52
craziest thing is that you know, maybe two blood tests ago you know three years into this like slow titration from you know, crazy crack head ninja back to normal again, and and she just started explaining to the phlebotomist that because you have for a couple years, I don't know what happened, but it was freaking me out. And the woman's like, okay, now she goes, I don't love it now, but I'm okay. So I don't know what happened gets better. Good. Yeah, she must have just hit like some sort of magical limit about being stuck with a needle and was like, that's it. It's over. But She's good. She's good again. I mean, good. What is good mean? I have to get right. I'm having a procedure next week, I have to have a little blood taken for every day I get up. I'm like, I'm gonna go get that blood draw done tonight. I don't know. No one's looking for me.

Denal 25:37
Well, I think about my other my two little ones that are the same age that Eliza was when she was diagnosed. And I'm like, there is no way that either one of those would handle the things that she has handled. She is so much stronger than the two of them. So thank goodness, I mean, if it was going to have to happen to one of my kids, Eliza is the one to have it happen to because she's so much more brave and strong than these other two little wimpy kids. So

Scott Benner 25:59
what if Eliza's not great, but all the other two are just a real mess? What could that

Denal 26:04
might be? This could be true.

Scott Benner 26:07
So you have twins are those? Did you take some drugs to make the babies?

Denal 26:15
We we took lots of drugs. Gotcha. Okay, isn't it? Yeah, they're IVF. Babies. It's funny because we have we have a lot of twins in our family. My sister has a set of twins. I have sisters who are twins. And so we've got a lot of twins. So when people ask me like, Oh, do twins run in your family? I can say yes, without having to get into the whole IVF thing. But that is how they were created was to right? Yes. That's how

Scott Benner 26:36
you something that you said earlier that struck me so strongly, but it didn't fit into the conversation anywhere was that someone surmised? Because you had been married about 11 years without kids? were having trouble conceiving? Like, wow, I didn't realize that if you didn't have babies, and you've been married for certain amount of time, there was a portion of the population that just assumed you were trying it wasn't working out. Like I couldn't have been possible that you just didn't, you weren't having kids on purpose. It's just a very interesting leap that someone made. You know, I

Denal 27:05
think that, you know, obviously, it was spoken about the community in which I am a part of, and I think that in that community family is a really big deal. And so obviously, you know, that's something that I and this girl knew me too. And so she knew that we had a goal of having children.

Scott Benner 27:22
So yeah, so now I realized that before we officially started the podcast, we talked about this, we haven't talked about it in the body of the podcast. You are You are somehow again, no one is pre screened before they come on the podcast is slowly becoming the diabetes Mormon podcast, so so so within your religion, not having kids for that long is

Denal 27:44
like, it's a flag. For sure. You know, it's not like everybody must have this many kids at the certain time. But you know, it's something that we do put placed an emphasis on and having kids is important and, and it was for us, you know, like we really wanted a family. When we first got married, I think my husband said I want a dozen kids. And I was like, Whoa, whoa, whoa. Let's start with less a few less and then if you need to figure out how to have more than that. We'll figure that out. But

Scott Benner 28:08
we'll start taking babies at the mall, but I'm not making babies.

Denal 28:13
I actually did say like, I think I could probably do six but then the rest will have to figure out how long they come in because I don't think my body can do more than that. It turns out I'm not very good at making them at all in general and so one pregnancy was enough for me I have three kids from one pregnancy we're good to go. Good job.

Scott Benner 28:31
Okay. Oh my gosh. So how how? Just made me laugh. How old is Eliza when you decide pump and is it pump? First? You're using the CGM.

Denal 28:40
We are using CGM. We just switch to the to sex and we love it.

Scott Benner 28:46
How would you like to hear how marketing people talk about the Dexcom g sex, let's say

Unknown Speaker 28:50
no idea where that numbers headed up. For now. CGM is more like a story. It stands for continuous glucose monitoring. And the

Scott Benner 28:58
Oh, that's nice. But now let's talk about the Dexcom g six like people like those who understand the battle. In the end, you need to know which way your blood sugar is moving, how fast it's getting there. And that is exactly what the Dexcom g six brings to you. Recently, I've been fine tuning ardens bazel programs, and I'm doing that with the information I'm getting back to the Dexcom half an hour ago, her blood sugar was trying to get low, but it never did. Why? Because Dexcom told us it was coming. And Arden was able to go get her nighttime snack at the exact right time to not only stop below, but to create a nice smooth transition from the blood sugar that was dropping to a nice stable blood sugar up let me look and tell you 97 Not only does Dexcom show you the direction your blood sugar's moving and how fast it's going. But it allows you to see those things remotely so Arden was in the shower as her blood sugar started getting low. I saw that on my phone. And by the time I got the Arden to tell her she was telling me Hey, that my blood sugar is getting lower. I'm gonna have that snack now. That amazing. Alright, listen, you You can get the dexcom share and follow on Android or iPhone. And you can find out all about the Dexcom g six by going to dexcom.com forward slash juice box. Because I have a tiny bit of time here at the end, I want to tell you that the Dexcom g five CGM system is now covered under Medicare for people living with type one or type two diabetes. You definitely should check out the CGM that's helped me keep Arden say one see between 5.2 and 6.2. For five straight years. The links you're going to need are at Juicebox Podcast comm we're in the show notes of your podcast app.

Denal 30:36
on here, so we did pump first when she was in first grade, we got the Omni pod and second grade. We did the CGM. So yeah, and we've we have loved it.

Scott Benner 30:48
When did you find the podcast?

Denal 30:51
So I found the podcast? That's a great question. Because what happened is I, I, I've always felt like I've been pretty awesome with diabetes. Right? I'm good at this. Our agency has always been around seven. And I joined like the beyond type one community. And I always felt like I was kind of like the person like helping people understand things a little bit. I kind of knew the answers. And, and that we've even been asked to be a mentor, and you know, through our, our office, and our endocrinologist office. And so I've always felt like, you know, I've got this, I'm doing pretty good. Yeah, there's things that kicked my butt every once in a while. But most the time, I felt pretty on top of the world. But then all of a sudden, allies was having these nighttime highs, and I could not get them down, she would hit 250. And I would throw insulin at her all night long. And I could not get her down. And so that made me start looking at the way other people were kind of managing diabetes. And there was a couple people online that were having these amazing numbers, that I was like this person, they're a crankcase, how are they even getting that they're just way too extreme for me. And so I kept looking and I remembered that a friend of mine is going to be listening to this too. So Hylia had mentioned your podcast. And I had never even listened to like any podcast before. I was like, let's give it a try. So I listened and I it was one of the first episodes and I listened to I probably listened to like two or three. And honestly, Scott, if I'm being honest, I thought you were kind of a crap case to the first time I listened to you. I was like this guy is extreme. It's fine if he manages his daughter that way, but I don't want to kill mine. So and So you were a little extreme, but some of the things you said made sense. And one of the first episodes I listened to was Steven ponders. And I was like, Okay, here's yet another voice saying kind of the same thing Scott is saying, and these other people on the beyond type one. And so I was like, Okay, I'm gonna take some of these things, and try to you know, make her a one clo better to make these 19 highs stop. And, and so I started kind of applying those things. And then there was like this one moment, this one key moment, that really forced my hand and made me realize that I had to follow some of the things that you were suggesting. And we were playing a license or playing a board game. We were playing battleship, do you know that game? worse? Yeah, so so I've just been teaching her the game, she had never played it before. And, and she was understanding it, you know, she's, she's the smart little girl, she can understand this game. And you know, you've got the part up above, that's where you put your, you know, your ships, and yeah, your pegs that you're guessing to the other person, then your slips below. And then you've got your cross lines that you've got to, you know, line up and everything of J 10, or whatever. And she was getting that she was having a fun time. And we started off with blood sugar was was around 100. And within the next like 45 minutes to an hour of playing this game, her blood sugar went from 100 to about 200. And during that time, her cognitive reasoning diminished the entire time we were playing that game. And I was like, I can't do this to her anymore. I cannot let her get shot. He struggles a little bit in school. And I was like, it's her blood sugar is an average of 150, which is what a Wednesday of seven is. That means that there's a lot of times that she's sitting at 200, which I our threshold on Dexcom was 200 I wasn't taking action. It's not like I ever looked at 185 and said, Oh, good job. I nailed that. I always knew that was high, but I wasn't taking any action. Unless it was meal time and then I'd correct it. But, you know, I'd let her sit there. And because it wasn't above that threshold of 200 and

Scott Benner 34:42
that moment yourself into being okay with

Denal 34:45
Yeah. And just, you know, just like I wasn't told anything different either, you know, and so, I at that moment, I was like, okay, you know, one of the things Scott does is he lowers his specials. So we lowered that threshold back down. I think I lowered it at that. Point to 150. And, and it was amazing the mental shift that happened in my brain. At that point, I was like we are, I'm taking action all of a sudden, and it's not taking I crashed a couple times because it does not take as much insulin to bring down a 150 as it does a 250. And so, you know, I've crushed her a couple of times and learn to slow down on that. I'm sorry, I'm getting another call. And I'm gonna have to go out there and it's stopped.

Scott Benner 35:28
I couldn't even tell. Okay.

Denal 35:31
Yeah, so so that was the first thing that I did. The second thing was starting to Pre-Bolus her. And I couldn't believe what a difference that made. And so we went into the endo, after a couple months of following some of your advice, went from a seven to a 6.2. And my endo was like, and she comes into the office, she's like, I'm sorry, I'm late. And I was like, I didn't even notice. And she was like, I was walking around with your chart showing all the other endos your daughter's chart? And I was like, and she goes, she goes, What have you been doing? And I was like listening to a podcast. And she's like,

Scott Benner 36:07
she was probably walking around trying to take credit with the other kids, they probably have some sort of a bet in the back office, you probably put her over she wanted the gift card or something like that. Which by the way, is a fantastic idea. I don't worry, yeah, they could be playing like some sort of a game with all their patients. Well, well, first of all, I'm glad you capitalist thing, you know, and I get how, if you come in cold, especially now that the podcast is older, like back in the beginning, if you would have come in in the beginning, you would have just been like growing along with me, while I was kind of like fleshing out the ideas. And I would have seen more like you searching and less like the person who had already gotten to the spot, you know, right. And so I get that I, you know, I just got back from speaking somewhere. And I started by saying, this is gonna sound crazy to everybody in the room. But Type One Diabetes is mostly about Pre-Bolus, seeing and understanding the balance between timing and amount. And that's really kind of it. Like, there's more than that. But that's the, to me, that's the seed of where it all starts. You know, and it's just, you know, to hear somebody say, my kids, a one sees in the fives when yours is good. And yours was good. You know, at seven. That was that that does sound insane. I hear from a lot of people Oh, I just figured you were low carb when I saw that at first. I get that there's a barrier to, to wanting to hear more. But I'm glad you did. It sounds like it's going really well for you. So that's really, the key to the whole thing for you is been Pre-Bolus Singh and not letting her blood sugar get too high before you act.

Denal 37:39
Yeah, absolutely. I mean, those two things alone have changed so much about what we do. And, and, you know, there's been these moments where she has, I can tell that she just feels better. And you know, and when she gets high now she recognizes that and she even has started taking action. You know, she'll give herself a bolus, she's crushed herself a couple of times. And I've had to tell her, like, let's not just jump to two units there, let's, you know, now the rule is she has to follow whatever the pump says, you know, when she puts her blood sugar in, if she's feeling high, she did it once. And we're on a date. And she was home with the babysitter and she saw that, that she was like at 150. And I kind of purposely ran her a little bit high just because I didn't want to deal with we've been having these like, lows right before bedtime. It sounds like I'm not having this happen. So I ran it a little bit higher so that I could just be on a date with my husband and I'm sitting in the theater and all of a sudden I'm getting this, you know, alarm that she's like having a 50 and I'm like what this is not supposed to be happening and turns out she had decided to give herself two units where I would have given her a half for that

Scott Benner 38:40
trial. She's gonna I mean, that's another way to learn, you know, is to kind of her own little experience. It's cool that she feels like you know, like she wants to do something about it. I will tell you that like Hold on tight because you know, everybody says we told you know wait till it happens wait till they hit that spot that age you know it's harder with girls and is with boys you know on because of like, hormones and blood sugars and stuff and I'm telling you I'm I'm four months into it being harder. And yeah, and right now all it means is it's less predictable than it had been in the past. Staying fluid is more important than ever, and I am really really seeing how much benefit bazel rates can bring. Because it's they've been a huge help to me. Moving forward doubling basals moving Basil's way up when she's RNNs resistant from her insulin. It really is. It's nuts and it lasts for so long. Like even when I did an interview a while back with somebody and we all we talked about was like, you know menstruation and how it worked. I was like, Oh, so like, weeks before the actual you know, period like this. I'm like, Okay, I get it. I get it like it's okay, now that it's happening. I'm telling you those years moving up to this those as hard as they seemed those years Your training will yours. So

Denal 40:01
I'm just hoping that horizon or dash or whatever it is, it's coming from Omni pod and her in in the Dexcom comes out before I had to deal with any.

Scott Benner 40:10
I guess you will probably honestly age wise you'll it'll it should be. It should beat her. It should get here before her maturity time, I guess.

Unknown Speaker 40:19
I hope so. I hope so I

Scott Benner 40:21
think it but it really has been working for me. I mean, I just had to set up a new bazel program that I didn't name anything, but it was the one I'm thinking this is the period bazel program. It takes her basal rate from like 1.4 to three an hour. Oh, wow. And that's enough to hold things down. So it was really bad bent my mind a little bit when I started doing it. It took me I will tell you, that was mentioned this the other day to somebody. I found myself sitting in my house very quietly one day thinking, Okay, when this happens to other people, what do I tell them to do? I really did think like, Okay, if this was somebody if this was somebody else talking to me, what would I say to do?

Unknown Speaker 41:08
You know, and so I just took your own advice. But not

Scott Benner 41:11
I don't mean it like that. I don't mean it, like in a douchey way What I mean is like, I mean like that. It was you know, things have been going along so well for so long that I was just on like I was on cruise control. And I didn't I didn't have to make any grand adjustments. And then a couple of years prior, like I'm telling you, I just did what I did. I did what I say on this podcast and her a one season two fives, it's like no big deal. And then all of a sudden, it was a big deal. And and I had to like it wasn't just like little bump and nudge changes, like I have to make like a, like a wholesale change here to something I'm doing. What would I say to someone else? And I thought, Well, what I would say to someone else's if their blood sugar's high, there's not enough insulin, or it's Miss time or combination of both. So I was like more insulin and it wasn't just enough to bolus more. And when and then I was like, Oh my god, I'm doing all this big bolus and the blood sugar is not coming down. And then I thought, right, because when you're bolusing, too much, your bazel is not high enough. And I was like, Oh, that's a thing I say on the podcast. And so. So I made all the adjustments and our blood sugar came back down. I was like, no kidding, that podcast works. Like, it floored me because it's something that from the outside. You know what I mean? Like, it's something you see differently than I see. And yeah, and so I, I don't know, it's hard to put into words, but I actually just stopped myself and think like, what would I do? And, or what would I tell people to do? But it's, it's going well, again, it's a little different. But you know, it should get us through this part. plushies growing you can see it on her she's getting bigger and more mature. Like, you know what you mean? And her boss like thickening and like get everywhere. She's not she's not gonna be a kid much longer. so crazy. Everyone Hold on tight.

Denal 42:53
Yeah, we just had to increase Eliza's bazel at night too, because we were having again, like we got through that little patch six months ago. And I think she's on another growth path growth spurt again, and I just increased her bazel from I think it was 8.5 or point eight, five, to now one. And I think that's a little strong enough to bump it back down. Because this morning, she woke up and she was like at a 63. And I was like that's a little probably lower than I I want you to wake up at. So I think that was a little stronger than it should have been

Scott Benner 43:21
for making the adjustments and paying attention. And that's the part you have to that's the stuff you have to do to be perfectly honest.

Denal 43:27
It is constant. It is

Scott Benner 43:29
it really it really is there's Arden's home today, there's no school today, here. It's one of those pretend holidays where teachers are like, I'm being enriched. I'm like, Okay, and so I'm in Arden sleeping in. So there's this possibility in the next like, 15 minutes while we're finishing up, I might actually have to go make an adjustment to her bazel while she's asleep, but I'll let you know.

Denal 43:49
I wish my kids would sleep in that would be so nice. That's I don't know how you have kids that sleep in maybe not. Oh, it's miserable.

Scott Benner 43:57
That's a hard Do you have you considered threatening them? Because I have to. Because that's that's you can't do that. That's not good at all. I Oh, that's horrible. No, no Arden would sleep her whole life away if she could, if you didn't work she when she's it's interesting. through middle school. You couldn't get her to get up on time for school. It was a constant battle. like you'd have to be in there like shaking her, you know. And for a long time, I couldn't figure that out. Then we realized she had hypothyroidism when she got on Synthroid, that got a little better. So she wasn't as tired. So then I felt bad about that because I thought she was just like, lazy and didn't want to get up. But I think it turns out, it was a thyroid issue. But, but still, for the year and a half after she was on the Synthroid. She still likes to sleep. So but she can get up now. Like now she can actually get up without a problem. And then high school started and it was like a switch flipped. And she's like, I'm gonna be on time in high school all the time. And I was like, Great and she's never been late. Chao pops up and gets dressed and she didn't know how to hurry. Before, does that make sense? Like if you can't, like hurt, like if that it felt like if the house was on fire and people were shooting, she'd be like, this is the pace I'm moving at. And now and now she knows how to look at the clock and think I have to move quicker. And she actually does it on her own without being taught so or being without being told. So hopefully, growth like that will continue because, you know, I think your biggest parenting job is to repeat things over and over again without getting completely frustrated. And I was getting tired of being like, hurry up, hurry up, please hurry up. Please go faster. You're killing me. Why don't you go faster? That finally went away, it'll be replaced with a much bigger problem that probably involves a boy. Good luck with that, guys. Yeah, I'm sure it's gonna go horribly. Anyway, okay. So you're you're doing like you're at a seven. And you start just making small adjustments like Pre-Bolus saying and being a little more aggressive. And the one thing again that I can't stress enough. I, your high mark for Dexcom where you alarm at a high. The lower you bring that down, the quicker you can react with less insulin, the less lows you get later, the less highs you're half right. In the 11 years that Arden has been using the Omni pod tubeless insulin pump, it's always felt like it was made just for us. It just fits her life. It fits her needs. And it's easy. The last time her pump needed to be changed the timing of it was not great for school, we had put the pump on I think on a Saturday in the afternoon. And of course, it needed to be changed on the school day, then in the afternoon, still while Arden was at school. So I made this sort of like split second decision as we were going out the door for school, like we have to change your pump now. Because otherwise, it's going to need to be changed while you're at school. So come here real quick. And I always wish you guys could watch while we're doing that the pump change is just so simple insulin, fill it, push the button it Prime's itself, needle cap off, stick it on push button, click like like it's in, you're all done. I mean, to call the diabetes pitstop would even be unfair. It takes no time whatsoever to change an ollie pod. One of the little things I love about it, because it's easy to stand here and tell you about Oh, it's tubeless. And you can swim with it or you can shower with it or you know, you'll always get your baseline. So no matter what you're doing, even if you're liking activities, or climbing up the side of a mountain doesn't matter. But in the end, once you get the pump and you realize it works, and it works in all parts of your life. What's left is how it impacts your days. And the pod just doesn't, it just doesn't get in the way of you being you. I hope you go to Miami pod.com forward slash juicebox. And check out a free no obligation demo of the Omni pod today. The greatest deal in the world they're gonna send you out a free pod you can stick it on see what it feels like wear it. Check it out, really give it the once over you know what I mean? Put it through the paces. Dancing for diabetes.com dancing, the number four diabetes.com do it now. Why not now is almost over doing the podcast. All you have to do is go to dancing for diabetes.com that's gonna fill your heart with goodness. And make the rest of your day better.

Denal 48:25
Yep, absolutely. Yeah, I haven't set now to 140 I heard you lowered serious recently. And I was like, whoa, I'm not sure if I'm ready for a 120 or 125. But we're at 140 now and it's it's pretty it's working pretty well for us in definitely respond. And it's amazing how when you respond when she had said you know, 140 Mark, or you know, if you see it going up rather quickly at 130 or something, you know, you respond to that. But you know, when she hits 140 I'm like I'm gonna nudge that back down. And it works so much better than when I was getting a 200 it was so frustrating at night, I would sit there and watch her going up. And you know, I'm sitting there watching like a 140 to 150 to 161 70 and I'm doing nothing and I'm just gonna go here we go again. Here we go again. And then finally it hits 200 nuns walking up the stairs to give her a bolus and and you know, when I listened to you and I realized like I should be reacting at 140 because I know this is happening. The problem was I couldn't respond to it. Because it would happen sometime between like nine and midnight. And so I never knew when that you know turn would happen. I couldn't just give her a bazel increase. At that point it was going to have to be a bolus because some nights it wouldn't happen. It was this weird growth spurt thing that was happening and but responding to it at 140 made such a big difference and responding to it at 200. So yeah, it's made a huge difference for us and she's waking up in range, which means that she's staying around all day, and huge difference there in great a lot of times the way you start is the way you finish. So Oh absolutely.

Scott Benner 49:54
Yeah, it's you start with a high blood sugar in the whole day can become a rack and warm vice versa. So it is great. It's so much you're describing that, that prices right? mountain climber game, where it's Yoda Lee and he's going up and you're like, it'll stop. It won't fall off the edge. It won't. It always falls off the edge. And, and you're watching a blood sugar climb the same way. Is it an interesting 140 50 6070 8090? Nothing but then it hits the hits the where you said, Oh, hi. And like, well, now I have to do something that is such an arbitrary thing that everyone does. It's crazy. It's like, why is it 200? Like, what if someone would have said that line at 150? You would have stood up at 150?

Denal 50:37
Yeah, yeah. And that's exactly what happened. Once I lowered it, like my brain just switched over like, this is what a high is, you know, and, and it became like a competition to myself, like keeping her down below that, because I was really good at keeping her below that 200 Mark, even if it was 198. You know, now I'm, you know, this competition of keeping it below that 140 Mark, haven't said this in a long time. But if you can keep a blood sugar stable 200, you can keep it stable at 180. If you keep it stable 180 and keep it stable 140. If

Scott Benner 51:03
you go to 140, you can do it at 90, it's all the same thing. It's all the same. The only difference between 90 and 200 is what

Unknown Speaker 51:12
I don't know, what's your fear.

Unknown Speaker 51:15
It's your fear. It's your

Denal 51:17
it's your fear what you've said a million times, I can't believe I didn't just say I'm sorry, don't be upset.

Scott Benner 51:21
It's no, it's your absolute your fear, it's your it's your turn that you can't react quickly enough to stop below if it should happen. The funny thing is, if you're staying around 90, you're using much less insulin to accomplish that. Which makes which makes a low, much less likely.

Denal 51:36
Well, the other thing he said to about lows that made so much sense to me is if you can rescue it with a juice box, if you know how much juice box or Skittles or whatever it is, you know how many carbs it takes to rescue her, you know, then don't be afraid of giving that much insulin. And that makes so much sense to me. So I was like, Oh, you know, I can give her two units of insulin because I know when juicebox is going to take care of that. So that's not a problem. And we're already at, you know, if she's having a really stubborn high, and we're sitting there at 180, and I can't bring it down, like two units is going to be rescued the juice box, let me just throw three at it. Because I need that other unit to like really knock that sucker down.

Scott Benner 52:13
So much. You're such a good listener. And I don't mean like, I don't mean listening to me, I mean, listener of the pie, after I said that, I was like, Oh my God, I've said that to an animal before you're such a good listener. I didn't mean it that way. No, but you really pick this stuff up quickly. So So then my question is, when you start listening, once you get past the, the kind of crappy part where you're like, I'm doing fine. So this guy must be a lunatic. Then once you got past that, did you find that when you were hearing things, you thought, Oh, this is stuff I've thought, in the back of my mind and never given light to? Or was it completely new? Or was it a mix of that?

Denal 52:54
I think it was probably a mix. And you know, without having the I don't know, that boldness factor of being able to say, this is working for somebody else. And if I do it, you know, he's having success. So I can do this too. And I can have success. You know, because we've certainly played around with things before. And I never felt like I had to call my endo to get permission to make changes. I always felt like I had that ability. So this was just like that next step. And that next growth of making changes was to just take it on myself. And, and yeah, and do what you said, Be bold with insulin.

Scott Benner 53:37
And just genuinely grateful that it struck you that way. Because he could have been the opposite. Obviously, you could have listened and just been like, this is stupid and go away. And I realized that that probably happens to more people than I think, you know, who kind of come on and listen for a little bit than think this isn't for me, or, you know, he's doing something I don't understand, or He's full of crap or whatever it ends up being that you think you think right away.

Denal 54:00
I will say though, I have told a lot of people about your podcast, and I have gotten a lot of people, you know, giving me feedback saying this has changed everything. This is so great. And so I i've advocated a lot for you think I deserve a part of your paycheck, I think

Unknown Speaker 54:16
like a magnet.

Denal 54:18
Awesome. No, no, yeah. And it's nice, because, you know, like, even if I had figured this out and come to my own conclusions, I'm not the kind of person to start a podcast or to start, you know, throwing that out there. It's definitely not my passion. But I'm so glad that people like you, that do add this voice to our community because it adds weight. When I give suggestions to other people. Like I said, I've been a mentor for other people at our endocrinologist office and and whenever I say, you know, they'll call me and say, Oh, my son is in high all night and what to do, and I'm like, well, he needs insulin. And then I'm like, Well, you know, let me let me show you what I mean. Go listen to this podcast and this episode. Really explains it. And it's like it gives weight to something that I'm a nobody. They're not going to listen to me. But like, you have a podcast to listen to. Yeah, I can't

Scott Benner 55:07
believe that's the thing.

Denal 55:08
Yeah, well, it is like, right. I mean, you know, I think you've probably seen sometimes I've on Facebook, I'll say yes. Or just like, you know, I've tagged you in posts before and things like that. Yeah. Because I know that, like, my voice is not very strong, but your voice is stronger. And if I can help people through you, that's great. That's really great. And I'm really appreciative that, that you have not let diabetes define you. But you have found definition in having this diagnosis in your family. And I'm, and that's what I think is beautiful about this disease. It's not something that that is something to be mourned, but something to find, I don't have a definition, and, and help other people. And it's a great community that we're a part of,

Scott Benner 55:51
it's wonderful. It's a great thing you're doing by helping other people. And I think you're, you're undervaluing yourself a little bit, because your story is valuable to you. We're where they were, and you're not born. And you're not there anymore, either. Just because, you know, the path that you found came through this doesn't mean you didn't have the the confidence and the nerve to like, look for an answer. Fight, fight through when it didn't make sense. At first keep going like there's a lot you did to get through that, like giving me the credit really is. I don't think it's necessary needed or even completely true. To be perfectly honest. Like if, if, if I would have written all if there was a magic way to write all this down on one sheet of paper, and you would have found that hanging on the wall in your endos. Office, you wouldn't have later thought, Oh, well, that I have to tell people about the person who wrote that on that paper. You don't I mean, like, it's just the problem with diabetes is that it's obviously a multifaceted thing. There's so many variables, and to read about them. It just doesn't do it justice, like these conversations are how it comes out. Like You I don't even know at this point, right. We've been speaking for almost an hour. And I will let this sit for a while I'll go back and edit it out. You'll have said something that I don't remember at this moment that when I go back and listen to it, I think oh, wow, that's incredibly valuable, somebody is going to really get something out of that. And if I would have asked a different person the same question, they wouldn't have said it the way you said it. The way you said it's going to hit somebody in the way I say it's going to hit someone else in the way the person last week said it's going to help and those are the voices that blend it all together to give me credit is to say that, all I really do is I had this idea. I have a way I manage. And then I bring different people together and let them talk about it with me. That's really it. You know, it's it's incredibly valuable. Don't get me wrong.

Unknown Speaker 57:43
It's so powerful.

Scott Benner 57:44
Yeah. But to give me credit for it is ridiculous. Because if I just sat here and talked for an hour, nobody would listen, I would have run out of things to say a long time ago.

Denal 57:52
You know, that's it, you even just decided to do it, I think is really important. And I think it's it's a voice in our community that is, is needed.

Scott Benner 58:01
Well, that's really, that's very kind of you to say, but it's it's exactly for the reason of your bat. It's your battleship story. Like right as you saw your daughter's like you think, Wow, like she started playing this game. She was so good at it. And then her blood sugar went up a little bit, a little more, a little more, and she lost her ability to even reason her way through this game. I can't I can't let this happen to her. Right. That's exactly what you thought. Yeah. I've had feedback from people for so long.

That it that's how it strikes me, I How could I see this happening? And then just go Oh, well, good luck. You know, the other day, I helped a 22 year old girl who's had diabetes, and she was 18 months old. And it took me half an hour to talk to her while I was cooking dinner. And she went from a lifelong struggle to this amazing graph in 24 hours, 24 hours was insane. And I almost

Denal 58:56
I was gonna say I almost wish that I had the opportunity to find a licensed birth father and talk to him too, because there was this moment, when we found out that he had type one. And we had the opportunity to have about a year and a half into our adoption. And we knew that he had type one. And through the birth mother had had mentioned that. And so when we met we have this like big party, they welcome to their home. And we were just having this like good time get known. One of the reasons we wanted to be there was to like really kind of, you know, get some medical history. And so I brought up diabetes to him. I said, Hey, I understand you have type one. And he goes, Oh, no, I used to but I don't really anymore. And I was like, wait, I was like I don't think that's how that works. But I don't know anything about this disease. I'm not going to argue with you. And his mom is sitting right there too. And she was like, Yeah, he was really young when he was diagnosed, but he doesn't really have it anymore. Like, oh, I don't know, I guess maybe they just don't want to talk about it. But now looking back on pictures and some other things that we know about, you know, the birth mother mentioned that he had had seizures that he had had his passed out a few times. And, like, in my mind, I'm like, Oh my gosh, I want so badly to go and like find you and like, help you now, we've lost contact with him a little bit, I probably could, but I don't like, obviously didn't want to talk to me about it. So I'm not going to go and like intrude in their life and be like, now that I'm an expert about diabetes, let me tell you how used to be managing your life, but I see pictures of him. And I'm like, that is exactly how Eliza looks when she's high. And I know you're just high all the time, like you're just not living the best you could be. And I want to, like, share this with you.

Scott Benner 1:00:35
I completely understand. And I think that the, I think the real sadness that we don't talk about too much. And is that this podcast or beyond type one, or any of the other? Many, many really valuable tools that exist, don't reach nearly everybody, you know, there probably are only reaching a fraction of the people who are looking for answers. Like I don't even I don't reach everyone who's out there hoping to find something like this. Right? You know, so how do you reach the people who have given up? And so that's why I think the podcast is, I always wanted to get back to doctors, right? I like I love that you told your endo, the ag learned us on a podcast, because at some point, doctors are gonna start saying the things that we're saying here before you even need a podcast, and then you won't need this. You know, I think that's all it really is needed. And listen, if people want to make decisions moving forward, that don't take the best care of their health, that's absolutely up to them. But they should, that they should at least know the truth. before they start, they shouldn't get stuck in, here's some needles, you'll figure it out. And then a year or two later, they haven't figured it out and they give up or they get depressed or whatever happens. Or your blood sugar, your blood sugar gets so high for so long. You can't even think about it.

Denal 1:01:50
Right? You know, and and you just think that that's what life with diabetes is like, we deal with highs and lows, that's what life is it's never in between. and there is a better way, there is a way that you can have it so that it's not a roller coaster, every single moment, both things happen, we spike up, we go low, those things happen. But it shouldn't look like that every second of every day. And there is a way to figure out how to be better.

Scott Benner 1:02:12
And there is a you know, a way of thinking that a lot of people have which is well I have diabetes. Now that means I'm going to live a shorter amount of time. And they accept that. And then then they once they make that acceptance, and they don't really have to put a ton of effort into the management side because, well, it doesn't matter. Like this is my lot in life. And it's certainly not true. But maybe it's true. Maybe it's true for them maybe for a number of different reasons. They really can't do the things you're doing or the things that I'm doing. And they just go Okay, well, let me just get on this rollercoaster ride as fast as I can until it crashes, and then I'll walk away. You never know, I know somebody with type two diabetes, it takes no care of it whatsoever. And constantly sweating and confused and everything and try to help and you say stuff and they just don't care. Sometimes their spouse gets them back. Again, using the medication, you can see that they completely change. And then not too much longer. And they just give it up again. And that's it. So I mean, not everybody's you know, can't save everybody, I guess. But at the very least I'd like to reach them once and tell them it exists so that they can at least have the option.

Unknown Speaker 1:03:21
Or Absolutely. It's my hope, though.

Unknown Speaker 1:03:24
You're doing a good job, Scott, keep it up.

Scott Benner 1:03:26
Yeah, very cool. I appreciate you saying that. Really. I'm a little tired this week, because I just got done traveling. So I was so happy that you were talking.

Unknown Speaker 1:03:36
I am very chatty,

Scott Benner 1:03:38
not just chatty, don't don't do that to yourself. You were responsive and thoughtfully responsive. So I said something, you were actually listening to what I was saying, and you kept it going, or you who knew what you thought I thought that was fantastic. So I appreciate that. Very, very well. I

Denal 1:03:53
hope I wasn't like to interrupting all the time. I I have a tendency to do that. And I apologize when I talk to every year.

Scott Benner 1:03:59
I don't think No, I think we were having a conversation. It's funny. My wife is a I talk you talk person. She thinks she thinks she gets to say everything she wants to say. And then when she's done you can say everything you want to say. And I think conversations are a little more back and forth. Mainly that's because I can't keep things in my head long enough to let someone else finish before I start talking. So I appreciate that. Sometimes you have to, you know, something comes out of your mouth when someone else I mean, you and I are looking each other right now you can't tell that all the facial cues that you would use in person are gone. So you kind of have to wait and go is he done talking? You know, I I'm doing the same thing. This podcast I was telling somebody the other day. If you really go back and listen through it has made me a much better listener. It really has helped me in ways outside of diabetes to have that is one of them. I'm I'm a much more complete listener. I used to be a person who while you were talking, started formulating what I was going to say next. Instead of letting you finish and seeing if what you said was gonna carry me somewhere else. So I fall out of it once in a while, I'm sure I'm gonna get an email from somebody like you still do that idiot. But I'm trying, okay.

Unknown Speaker 1:05:11
You really get emails from people saying things like that to you,

Scott Benner 1:05:13
the angry emails are very few and very far between but every once in a while I get them one person really did not like when I call periods lady time that seemed to one eye you talk over people, you think you're you're smarter than other people, you know that kind of stuff. But very, very infrequently. I have to say that. And it's nice. It's nice to get all the feedback. Because you can't obviously can't take the good feedback without without taking the bad stuff. You can't just say, Oh, I must be perfect for those people. So I'm perfect. And I want I really did learn about this years ago, and I've probably mentioned this before, but I wrote a book about parenting. And the first nine professional reviews that came back were also glowing. That like two weeks into the review process. I was walking around my house like I've written a perfect book, obviously. And then the 10th one came, and it was so bad that the publisher called me and said, Listen, there's going to be a review of your book tomorrow. That's not good. And I was like, Oh, yeah, that's fine. Don't worry about it. I have nine good ones already. We're on our way. Bhavani goes, No, listen, it's really bad. And I was like, What did the reviewer not like about the book? And he said, Well, basically, I think everything you along, he goes he stopped short of calling your family ugly, but it you know, it was really harsh. And I thought, Okay, well, that won't bother me. And then I read it. And it really bothered me. And I had to figure out how to let it go. It's the first time I realized that if I was going to put something out into the world like that I had to be prepared for the fact that some people would not appreciate how I did it, why I did it, what I did, and that if as long as I was comfortable with what I had done, and did it for the right reasons that I can't, I can't sit around worrying if it didn't strike somebody the right way. So I just do my best. And, you know, I would have to say that 99% of my feedback is all you know, more more like yours than like that. But you got to be ready to like shake it off, or it hit you pretty hard. I went out to dinner after that book review with my, my wife and she said I just sat there. Like, staring Oh, it was like, I was like how could they have hated everything about it? Like there was nothing?

Unknown Speaker 1:07:30
Anyway, anything?

Denal 1:07:30
How about bad? Like wipes away all the goods that was sent to?

Scott Benner 1:07:34
Oh, yeah. Oh, for sure. The first night, I thought were just wrong. When I just like though those people who really liked it, they must be stupid, this person knows. And then, you know, a couple days later, you realize it doesn't matter. Like that's the real key to it just really doesn't matter. I'm pleased with what I did. I absolutely did my best for the right reasons. And it's all I can do. So

Denal 1:07:53
I think that happens with diabetes too, right? Like a high altitude. You're like,

Unknown Speaker 1:07:56
I'm the worst at this. I

Denal 1:07:57
can't do this. Oh my gosh, what am I doing? I'm failing. And I've had to, like really stop myself from feeling that way of like, nope, this is diabetes, that you know, heights happen. And it's not because I'm failing. Even if I've had three highs in a row or whatever. I've had to stop myself and say, No, I've had success. I've lowered that from seven to 6.2. We're on the right path. It's okay that, you know, I goofed up I did not Bolus correctly for that Chinese food or whatever it is, you know. Yeah. So yeah, your one failure should not define all your successes,

Scott Benner 1:08:25
you set it almost the way I would have been. So I'm gonna make a slight like, I'm gonna say something about that. So I don't think it's just diabetes in the, in the sense that because I think people could hear that I know what you meant. But I think people get here that and think blood sugars are gonna go up. There's nothing you could ever do about it. That's true, it's going to happen. The truth is, there is something you could have done about it. You just didn't do it. And for for whatever reason, you know, a bazillion reasons it could have happened. But the truth is, is that you can look back at that moment later and think oh, I do see where this came from. And it might help you the next time. I just very strongly believe that it's not a mistake. It's just actionable data for next time. You know, I did something wrong like last night. Arden had I don't back down. I'm true to my word like as hard as Arden's blood sugars been. When she looked at me last night and said, I want to get Chinese food. I was like, let's do it. So. So we did it. And the first four hours after the initial bolus, things were going great. And then she starts going up and I can't figure out what's going on. And I realize I'm on her old bazel program that cuts back at 9am and 9pm. And so by the time I realized that was what was happening, then I started chasing with these, you know, I start chasing with with Bolus and I was like, oh, Scott, come on, it needs to be bazel embolus so then I put her Basal back up rebol list and she came back down, and now you know it, but it took it took a while because it was Chinese food and it got away from me. And so, you know, again, I just I think you have to strip the drama out as best you can. You really have to remove some of your emotions. You can't sit around feeling terrible all the time. Bringing your hands you have to go. Okay, I see what I did here. I won't do that again. And to your point, I might do it again. But I'm not. I'm not gonna make myself crazy about it later,

Unknown Speaker 1:10:09
that that's really cool.

Scott Benner 1:10:11
Well, thank you so much for doing this. I really genuinely appreciate that. I say, do we go over everything you want to go over? You know, I

Denal 1:10:17
think we talked about a lot of really great things. We were going to get into some more stuff about adoption. But I think that that's okay, that we didn't, we didn't get there. So

Scott Benner 1:10:27
all right, well, maybe next time I like to having you on. Did you love that one as much as I did? I can't hear you. But I would assume you're saying yes. Thanks very much at dancing for diabetes, real good foods on the pod and Dexcom. Go to dexcom.com forward slash juice box to find out about the G six continuous glucose monitor. Good real good foods calm and use the offer code juice box to save 20% of your entire purchase. Would you like a free no obligation demo of the Omni pod? Of course you would Miami pod.com forward slash juicebox. And don't forget to fill your heart with goodness at dancing for diabetes.com that's dancing the number four diabetes.com. If you can't remember any of those links are Juicebox podcast.com. Or right there the show notes of the podcast player that you're using now. Please don't forget to find the bold with insulin Facebook page and like it. Don't forget to leave a rating and review on iTunes. And don't forget to tell a friend about the Juicebox Podcast. And now the conversation that I had before we started recording, except I was recording. So before we started the podcast proper. So I know you're nervous. But I hope it helps you to know that I think I've recorded 230 of these and everyone's nervous at the beginning. Have you listened to any of them?

Denal 1:11:47
Oh, yes. I've listened to quite a few of them.

Scott Benner 1:11:49
Do any of them sound nervous?

Denal 1:11:51
No. A few. But no.

Scott Benner 1:11:54
It's one of my superpowers. I'll make you uncomfortable.

Unknown Speaker 1:11:56
Don't worry. Awesome.

Scott Benner 1:11:57
Okay. One of my superpowers that one and doing the dishes.

Denal 1:12:02
I'm pretty good at that, too. So

Scott Benner 1:12:06
I've taken to just putting my iPad next to me and watching something that I've seen before while I'm doing it. And then my wife said to me that she she was angry about something last I don't know, we've been together a long time. But she sees a cycle of about 20 days where she gets angry at me for nothing. I'm not blaming anything. And and so she seemed angry. And she's like, you just stand there with your iPad. And I was like, would you prefer I just stare at the dish? Like, what happened? I said, Did you could you send some happiness? What happened? Anyway,

Denal 1:12:40
I think it's our job is to find things that annoy us about you and point them out.

Scott Benner 1:12:45
Thank you appreciate it. I was on she she's coming at me one day and I said, you know, our daughter's 14. Like she just started getting her period like she has type one diabetes, or anyone sees in the fives. Like, you would think that just that alone. You could just leave me alone. Not just tried. Like, I just think she's got a happiness sensor on her. If I go over a certain setting, she's like, Oh, no, no, no, buddy.

Unknown Speaker 1:13:12
You matter?

Denal 1:13:12
How long have you been married?

Scott Benner 1:13:13
I would say if I was guessing. This summer, I think it's 23 years.

Unknown Speaker 1:13:20
Okay, that we beat by a few.

Scott Benner 1:13:22
I'm only 47 though, so?

Denal 1:13:24
Well, I've been married 20 and I'm only 42 Wow, you are so

Scott Benner 1:13:30
I could let me play the guessing game of where in the country you live. You're wrong. It's not that

Denal 1:13:39
probably is not. But that's not where I'm from now. Okay, so let me

Scott Benner 1:13:44
just go out. I'm just gonna make my one guest and we're gonna start Are you a Mormon?

Denal 1:13:48
I am a member of the Church of Jesus Christ of Latter Day Saints.

Unknown Speaker 1:13:53
So many Mormons on this show is

Denal 1:13:57
so weird. I hear it all the time. I'm like, Oh, another one.

Scott Benner 1:14:03
I should get like a free punch card from the church for something.

Denal 1:14:06
What might a person have are typing,

Scott Benner 1:14:09
I would like my own magic underwears. I'm saying

Unknown Speaker 1:14:11
no, no,

Unknown Speaker 1:14:12
I don't get that I can look at you. You're like,

Denal 1:14:15
don't do that. It just takes a little bit of water. And I say okay,

Scott Benner 1:14:20
I don't need it that badly. So anyway, that's, that's, oh my gosh. Now, you know, for the rest of my life. Anytime I heard somebody got married in their early 20s and his kids, I'm gonna be like, you know what I'm thinking here.

Denal 1:14:35
Well, in all fairness, I did not grow up in Utah. I am from Colorado. So I'm not a yutan important distinction. We live in Virginia. So I'm not that far from you.

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#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.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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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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#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

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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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 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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