Scott Benner 3/29/22 Scott Benner 3/29/22

#653 Step to the Jet

Janet is the mother of a college aged type 1.

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

Scott Benner 0:00
Hello friends, and welcome to episode 653 of the Juicebox Podcast.

Today we'll be speaking with Janet. She is the mother of a young man who has type one diabetes, and he has recently left for college. Those things and much more will be discussed over the next hour. Please remember while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Have you taken the T one D exchange survey? It's AT T one D exchange.org. Forward slash juice box. Your answers to simple questions which will take you I'm gonna say fewer than 10 minutes to complete. We'll help people living with type one diabetes. It also supports the show when you complete the survey. You need to be a US resident who has type one. We're a US resident who is the caregiver of a type one to complete the survey T one D exchange.org. Forward slash juicebox.

This show is sponsored today by the glucagon that my daughter carries G voc hypo Penn Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored by touched by type one, Learn more at touched by type one.org Or follow them on Facebook and Instagram. Touched by type ones mission is to elevate awareness of type one diabetes raise funds to find a cure and inspire those with diabetes to thrive. So that's it whenever you're ready.

Janet 2:11
Okay, I just start talking.

Scott Benner 2:14
This is my favorite part where people uncomfortable tried to introduce themselves. Just Just tell me, tell me whatever you want me to know.

Janet 2:22
Okay. Okay. My name is Janet. I am a military spouse of the been married for 25 years. And 14 moves in 25 years. So that's fun. My son. Leo has been diagnosed with type one he was diagnosed just about a year ago. Well, actually a little over a year ago. I don't know what else to say now. He is we're empty nesters. This time around. We were living in Texas when he was diagnosed. And then we got him all set up in college and then we moved north. So we're now in Ohio. Two kids in college and now we're trying to figure out this whole empty nester thing.

Scott Benner 3:04
Did you get married in 1996?

Janet 3:07
I did. Oh,

Scott Benner 3:09
I was married. 96 is the only reason I know that because I've also been married for 25 years. Okay, how old are you?

Janet 3:15
I am 49. Wow. Yeah, we can come like friends in high school we

Scott Benner 3:22
could have been, and with the fine exception of you were apparently nowhere near me. And but I'm just uh, we were at a wedding this past weekend. And they did some sort of a dance where married couples dance, and they they kind of whittled you away by how long you were married, which I think is a fairly common thing at weddings. And we got to the end and there were three couples left. I was still dancing. I was like, Oh, my God, I'm old. The people who beat us were much older than us. So I was like, alright, well, I guess that's what I'm shooting for. Is that my goal? You know, so it should be you think right. I have to ask you a question before we started about the diabetes stuff. Yeah. Okay, is the empty nest stuff scary.

Janet 4:10
It you know, it's just odd. It's just like, you know, for so long your schedule is built by these, you know, you're sitting in bleachers, or you're driving or you're going to some activity or arranging some activity. And so now all of a sudden, we have to kind of build our own schedule a little bit and so and then the constant of you know, stalking your children when they're, you know, five states away and wondering what they're doing and so we're getting used to it in some of it's really fun. Like my husband went on a TDY which is military version of a business trip a couple days ago, and I'm like, Hmm, I'm just gonna buy my plane ticket and join them because I can't Yeah, so I've never really good Good Goods and positives and but also a little weird.

Scott Benner 4:58
Yeah, I I found myself, I'm beginning to lean into it. Now, even though Arden's just in high school, but school went back and she's very active and things that are happening at the school and she drives now, which is amazing. And you know, so she's sort of in and out of the house and doesn't need me for anything, you know, related to her waking or bathing or anything like that. And I'm just like, last night, it's like midnight, and Kelly's gonna go to bed. I'm again, pretty soon. I don't have to record till noon tomorrow. And so it's like, you know, a little bit. I watched a little something, I fell asleep. I slept later than I usually do. I was like, huh, is this but it's gonna be this isn't bad. Although my imagination tells me that at some point in the next couple of years, Kelly's going to kill me or kick me out of this house.

Janet 5:41
You're gonna need a different hobby. It's my expectation. She's

Scott Benner 5:44
gonna be like, Oh, wow, look at him sleeping while marking. So anyway, that's, that's pretty cool. Is your husband staying in for the I mean, he's obviously a lifer. But how long does he keep going?

Janet 5:56
Well, at this point, the Air Force will tell us, we were kind of at that point where, you know, if the, the job he's either offered and we can say, You know what, nope, that's not for us. Or, how about this? And we say yes, let's go. Well, it's worth another couple. Couple years. So we are at the, at that point where it's kind of a mutual decision between the it's kind of hard to explain, I guess. But I guess we are waiting, you know, for the next job. And if it comes, it comes and if it's not, okay, thank you for your service, you know, kind of thing. So we're at that point.

Scott Benner 6:35
So he's at the point where they may offer him something new that thing, maybe it's someplace else where they may just say we were paying you way too much money? You've been here too long get out of here?

Janet 6:45
Well, no, actually, it will. I mean, we will move if he does get offered another job. And next job, it will be at another location. You know, we don't know how long we'll be here. It could be one year, it could be two, it could be three, we don't know. Such as such as the state of where he is right now. So the the next job? Oh, it's just gets really weird. When you're at his point of his career, you know, the guy becomes really tight up at the top of the pyramid, you know, so

Scott Benner 7:17
we don't know. We'll see when you guys got married. What what did he do?

Janet 7:21
He was in there. He was in the Air Force, actually. He went to the airport Academy. And he had just he graduated and was getting his master's and I graduated. And then he finished school. We got married and hopped in a car drove across the country. And he started pilot training. So yeah, this is all this has been our life.

Scott Benner 7:41
The entire time. He's a pilot. And yes, does he fly jets? Does he fly transports? Like? Yes,

Janet 7:48
well, he flew, he flew F 15 fighters for for the first portion of his career. And then he went over into the instructor pilot training side of the house. So then he was flying the T 38, which is the fighter trainers. So he did that. And now he's currently flying a desk. So

Scott Benner 8:08
the closest I can come to understanding what you're saying is that I am excited for the new Top Gun movie to come out.

Janet 8:14
Oh, am I so I'm so excited. It's so cheesy and so unreal. But I'm so excited.

Scott Benner 8:20
I don't like giving Tom Cruise money, but it has to be done. Because

Janet 8:24
it does in this case. I do. I do.

Scott Benner 8:25
Do. You grew up in 80s? It does. Oh, yeah. Okay, so my last question about your life is if I asked you to rattle off all the places you've lived, do you think you could actually hit them all?

Janet 8:38
I could. Good. Good. Okay. So started off in Columbus, Mississippi. And then we went to Tyndall, Florida. We went to United Kingdom, England, back to Florida. Then we went to Wichita Falls, Texas, then to Leavenworth, Kansas, then to Ramstein, Germany. Back to Texas, and San Antonio, then to Washington, DC, then to another base in England, and then to Belgium, Brussels, Belgium, and then Wichita Falls, and then he deployed for a year so I stayed with Chuck balls, and then now we're in Ohio.

Scott Benner 9:16
Your favorite place overseas to live was?

Janet 9:19
That's a hard one. They all have, you know, different stages of life. Two factors in there. You know, when you're, you know, young no kids, that's it's a different, fun place to do Europe. But Belgium, Belgium was interesting. It was very, very easy to travel from Belgium. So we were also there during the the built in terrorist attacks. So that part wasn't very fun. But the food was great. The people are fun. But towards the end, we were ready to come back to the States.

Scott Benner 9:50
That was a juxtaposition I didn't expect. Terrorist attacks were terrible, but the food was outstanding.

Janet 9:57
We're gonna look at the positives. Right,

Scott Benner 10:00
I'll tell you what you see that on Yelp, you don't know what to do. How about in the States? Where did you enjoy living the best?

Janet 10:08
Um, our family is from Texas originally. So I always kind of like, I've liked that our, our career has been able to send us there a few times. I loved Florida also, I, I joke that you know, we've always lived either in Europe or in the south. So like, this is actually the most northern in the states I've ever lived. And so I'm a little concerned like I'm getting get concerned about the, the weather the winter, but but we haven't we haven't been here too long. So I haven't really explored a lot yet. But so far, people are nice. And it's gorgeous. We've had gorgeous weather since we've been here. So

Scott Benner 10:45
well, we could have done this live a couple days ago, I drove to Kentucky, I went right through Ohio, so we could have done it at a rest stop. would have been way creepy. Yeah. Hi, Janet. Let's do this. We'll do this at a Chick fil A. Anyway, how old are your two kids? So your you have a non type one? Is that your oldest?

Janet 11:11
Yes, yes. So my daughter is 20. And then my son is now 18.

Scott Benner 11:15
At NEC he's, this is pretty much why you've come on today's to talk about this whole thing. So he was diagnosed about a year ago. While he was in high school. My first question, of course, is do you have any type one in the family or other autoimmune issues?

Janet 11:31
Nope. It was totally out of the blue. Okay.

Scott Benner 11:35
Even looking back now thyroid, a sleepy ant? Nothing like that. Nothing? No crazy. Okay. What how did it present?

Janet 11:47
Okay, let's see, we just started he had just started back to school to our being from North Texas, we didn't really lock down as a lot as as bad as a lot of the other country of the country did. So he was bright out about a week in school, we were doing school. And he was just he was just off. You know, of course. Now, all I know, the symptoms. He had completely, you know, classic symptoms. I just didn't, didn't know what they were. But he was just off. And he was, you know, he had started wearing my reader glasses, which he had just had his physical and was you know, 2020 vision, but then he's I saw someone like kind of stealing my readers so that he could look at things and that was weird. And, and the thirst and the waking up at night. And then one Sunday. We were at church, and he was just like, Mom, do you have any water and I'm like, Dude, it's an hour, you can wait until we get home, you know, kind of thing and we get home, he drinks like a gallon of water. And then he goes into work. And then he came home from work and was just laid out on the couch. Just it just he wasn't being himself. And so I'm like, you know, darn it, we've been able to escape COVID I bet that's what it is because I had no idea. So we go to the urgent care clinic, it'd been a Sunday. And they they gave him a COVID test. And they gave him a strep test and a flu test and, and then there must have been something that he said that kind of, you know, prickled, the the nurse and so she's like, hold on a second. So she went back and she she took some blood. And then she left the room. And then she came back in and just looked me dead in the face and said you need to go to the emergency room now. And I I had no words. I didn't know what to say. And I'm like, okay, okay, and she's like, just go now I'm gonna call them and they're gonna be waiting on you, but no explanation whatsoever. So, we get to the emergency room. They're waiting on us. COVID No, you know, we're all messed up, but they wish this back in and they had him hooked up to an IV very quickly. And the next thing I know, there's, you know, they were saying he's a diabetic, and I think his numbers were Oh, no, I'm sorry, I hit the wrong button on my watch. I was trying to silence it. Okay, sorry.

Scott Benner 14:19
That was the opposite of silence.

Janet 14:24
So, yeah, so we're here is number 2800s. At that time, I had no idea what that meant. And, you know, it was just it was just this whirlwind of activity and they're like, Okay, we need to admit them and you know, but he wasn't he was acting fine even though his he was in aid hundreds he was still kind of like cracking jokes and like what's going on kind of thing and which come to find out his peptides were normal. Like his pancreas is still alive and kickin. He's You know, I guess still way, I mean, he's still in the honeymoon. So so that that was a weird thing that they had to kind of figure out what the actual diagnosis because the all the signs for type one were there but there were still signs that as Pancras was alive, so there was that. And then they got us admitted. And this is I guess, looking back on it now it's funny at the time, I was really mad, but I hadn't, you know, my husband's deployed, of course, this things like this happen when your husband's deployed. And so I hadn't been able to get in touch with him. We're an elevator on the way up to to be admitted into the room, and my phone starts blowing up. So I'm like, does, you know all these, you know, like, either Instagram or text? Or are you okay? Oh, my gosh, what are you getting? Let me know if I can help. What do I do? Did it and I'm like, I haven't spoken to a single person. And so I turn around, and I look at Leo, and I'm like, What did you do? Well, he had gone and posted on Instagram already. That you're, you know, here I am in the hospital, I've got diabetes, you know, kind of thing. And so all of his friends who I'm friends with their parents, were just blowing up my phone, and I haven't even told his dad yet. So that was a I was a little upset about that part. But

Scott Benner 16:26
look into kids, he's like, I could probably get followers out of this. Like, get myself up to 500 or 1000. Even. Jen, I'm gonna do something with you very quickly. Before we go on, you have an Apple computer, I'm guessing from the sounds I'm hearing? Yes, the top. You gotta turn that off top left of your screen, you click on the apple, then we're gonna go then we're gonna go to System Preferences. Okay, then we're gonna go to sound

and then there's a sound effects tab, you should be on it already. Halfway down the the dialog box it says play sound effects through and then there's a slider alert, volume slider underneath it, slide it all the way to the left, make it zero.

Janet 17:14
internal speakers? Or did you say something else? Sound effects, sound effects.

Scott Benner 17:17
And then there's my way the left? Yep. And then you just leave that window open somewhere. So you don't forget to slide it back in and that you can quit it when we're finished. And that way your emails and other stuff won't pop through what?

Janet 17:28
Thank you for that, because I was really concerned about that. Right?

Scott Benner 17:31
Listen, anyone else listening to wants to be on the show you have an Apple computer, just do that before you get on and say it again. It'll be perfect. Now, here's the thing that I know from your note that people listening don't know is that your son wants to be a pilot like your husband. Yes. And this makes that not a thing anymore.

Janet 17:51
For the most part, I tell you the, the the minute that I heard the term diabetes, I knew in the back of my head that that was almost a negative percentage chance. But I didn't know how to tell him. And that that actually is the one part that makes me the most emotional. Excuse me. You know, we're sitting it was, I think we're on day, he was in the hospital for five days. And I think it was on day three. And I'm just still haven't gotten up the guests to tell him this. And I just remember the doc walks in and, and he's like, you know, going over the stuff, how are you doing? Are you learning, right? And blah, blah, blah. And then he's like, Well, you can do anything in the world you want to do you know, you just take keep this in control, you're fine, you're going to be good. So what do you want to do when you grow up? And I just froze, because I had been trying to think of a way to bring this up in there. It was laid out right in front of us, you know, and so Leo just looks at him. He's like, I'm gonna join the Air Force. I'm gonna be a pilot, like my dad. And the doc goes, except that

Scott Benner 19:02
wow, what a bedside manner.

Janet 19:06
And, and I'm like, I was like watching a train wreck. You know, I'm, I'm sitting there like, No, this is not happening. This is not happening. And there, there you go. There it happened. And, and that that was what really shattered. My heart was seeing, you know, his face just fell. He had he had he's got he's got such a quirky sense of humor. And he's so he's cracking jokes and already joking about, you know, oh, I got to do this. I don't die, you know, saying all his funny things. And he I was really impressed with them. He had such a great attitude about the whole thing and then all of a sudden has just been there and just cracked. And so, you know, we've had a lot of heartfelt conversations about it. He's currently he's in the College of Engineering. And you know, basically we're kind of like, well, if you can't, can't fly the plane Well, why not design them or do things with them kind of thing. So how ever just a few months ago, the Air Force Academy graduated its first type one diabetic cadet, he fought it and he brought he you know, cuz he was diagnosed when he was at the Academy. And it was basically they medically retire you they make you get out and he fought it. And he actually won. He presented all his, his numbers and his things and he's like, look, I might not be able to deploy that. I can do things. And he actually, they commissioned him just three months ago. So I sent that article to my son, I was like, Hey, dude, you know, look at this, it might be an uphill battle, but someone just cracked a window, you might want to consider, you know,

Scott Benner 20:52
trudging through trying to wiggle through a little bit. Yeah, that's, um, that is really sad. Also, the doctor seems like the kind of guy who would break up with you by going, if you're dating a doctor, raise your hand and then you start putting up your hand goes, nope, not so fast. May I say, John, you and I don't know each other. Well, but that's a douchey move. The way he did that.

Janet 21:14
It was probably a he was he actually was a nice guy. I think it was probably just a reaction of what he can do that, you know, I don't think he expected to hear

Scott Benner 21:24
you don't normally ask a question that has infinite positive answers and one wrong answer. Here, you know, it's like when you make a joke about somebody I don't know. That's something really uncomfortable in front of somebody in somebody like that. That's I have that you're like, oh, geez, sorry. Like, that seems safe. You know? This this guy, your kid? I'm assuming in that little gap of time you like maybe he changed his mind? Is there any way thinking of something else now? I hope he says I hope he says truck driver. You know, which by the way was an uphill battle for a long time and now okay. Yeah, I used to not be able to drive over the road trucks when you type on either

Janet 22:05
No, and I've heard also like the SWAT teams now you can be on a SWAT team and now you can do airliners you can fly airliners now, so the technology is absolutely amazing. And so I so we Hey, dude. This is what you want to do. Don't give up yet.

Scott Benner 22:23
Try to think of his name. But I had the guy on here who got like the first license to to flop to fly the jetliners he. I can't think of his name. I'll figure it out. Yeah, I

Janet 22:34
remember listening to that one. Yeah, I think not the

Scott Benner 22:37
same thing though. Your son wanted to do it through the military. Right. So yeah, yeah. Well, geez, so that's an auspicious start to this whole thing. How did the the the medical side of it go? Has he taken to that reasonably well? And how about you? What did you guys do for management?

Janet 22:56
Well, he is um, I will say that I've heard you know, time and time again on your show about certain doctors not really knowing kind of the thing of how what even type one is and I there was a huge stark difference between the ER doctor and the actual pediatric doctor because Leo was still 17 at the time while we were in the hospital, and the ER doctor was basically like, well, you've got yourself a diabetic that means you can no longer eat ABCDEFG you know, you're going to have to really change your entire lifestyle, you're going to have to do everything and so we're listening to this like going okay, this is a huge life change. Well, it is but you know, the doctor was already was focused on the, the food he can no longer eat anymore. You know, that's basically the first kind of advice we got in the ER. Once we got up to the peat floor and the nurses were talking with us and those doctors were coming in and seeing us they seem to be a lot more knowledgeable about it. And I think I think they did a good job. You know, we were there. Five days. They they had him you know, from the get go I was hands off. I'm like dude, you're 17 I'm not gonna learn how to give you a shot you need to do this and so he took to it right away and in the hospital, it was all vials and syringes. And all I can remember thinking is that for the rest of my life, I'm going to have to be doing math before he eats anything, you know, everything was just for you have to measure this and math and in how many carbs and all the things but then when we got home, they he went home with pins. He had the Novolog pins and Lantus and he did great from the beginning. He was kind of really on top of it. I now I'm the one that you know, cook the food and managed all the things so I was like I had sticky notes. Every time I would make a meal I would run Write out exactly how many carbs was in everything. And I was very, very anal about it. I was just like, oh, no, is this a this is a medium orange? Or is this a large? You know, I was so crazy. And then eventually, I don't know, I just kept getting frustrated with Leo, like, you need to know exactly how many carbs are in this. And he's like, yeah, it looks like about 15 You know, kind of thing. So he was much more laid back about everything than I was I keep I joke that, you know, I'm like, When Harry Met Sally, Sally, that is me. And he's like, laid back days confused. Matthew McConaughey. You know, just like, oh, that's, it'll be alright. Look at that. It's, it's good. It looks, I'll give myself 45. And if I need a bump up, I will kind of thing. So he's kind of really taken to it a lot more. Just easy, an easier approach to it. And, really, this kind of segues a little bit until and into how I found your podcast, because, you know, I guess when you're when your kid gets diagnosed with, with anything, really, people start coming out of the woodwork of, oh, that happened to me, or, Oh, my best friend's son has it or whatever. So, all of a sudden, I found all these people who knew about type one that I didn't know before. You know, they out of the woodwork and and you're this one lady said, You need to listen to the Juicebox Podcast, it'll help you out a lot. And I'm like, I hear the word podcast. And I was like, I don't do podcasts. I've never listened to one in my life. I'm not a auditory person, I'd rather read it or watch it and just listen to it, if that makes sense. And so I was like, I kind of blew it off. And then heard it again from from another random person who someone had given me her number. And so I called and like, hey, you know, such and such picked us up. They said, You have a King College. What's he windy? Can I ask you some questions? Sure did. And right before we got off the phone, she's like, listen to the Juicebox Podcast. And again, I'm like, No, I'm not going to do that. Because I don't do that.

Scott Benner 27:25
You didn't think what are the odds of two people recommending a podcast to me? Right? Well,

Janet 27:32
well, apparently I did. Because I'm like, so I walk a lot. And just to, you know, get outside and walk and kind of when my husband was deployed for the year, that was kind of like my coping mechanism, I would just just walk in and just, you know, go on trails, or whatever. And so I'm like, Okay, I'll try this podcast thing. And so I searched you up, and I listened. And I listened to, like, I was kind of lost. Because I think when I started, you had like, 400 episodes already. So I was like, I have no idea where to even start with this. And then I go, I don't know, if I Googled it, or I did something. Or maybe I think I went to your, your website, I looked at your website first, the Ardennes day. And there was something on there of that. It's like the blue box that has like the top episodes to get started with. Yeah, or whatever. Yeah, I saw that. I found that and I'm like, Okay, well just follow this little list. And so that's what I did. And then I was pretty much hooked. And I haven't listened to every episode. But I've listened to a lot of them. I would scroll through and try to pick, pick the titles. That sounded interesting, but then you can't go by that,

Scott Benner 28:53
because I put no effort into that. Yeah.

Janet 28:57
Like, I have no idea what this is gonna be about. So. Um, so I will say that your podcast really helped me relax, okay. It helped me realize that. It was it was manageable. And here's the tools to how to do it. You know, so I found it relatively quickly. In fact, I started listening to you before we went to our first diabetes educator, person. And I'm glad because I felt like the information was presented to me in a way that I could get it. Whereas before, everything was just very clinical and numbers and you have to do this math and then enter in this code and blah, blah, blah. Whereas now I was like, Okay, now I kind of knew what was going on. I knew what was happening, if that makes sense.

Scott Benner 29:53
Well, not only does that make me feel good, but you've you've saved my week because today is Thursday as we record it on Tuesday. I heard a story about how somebody found the podcast. And then she told me she didn't really like me very much. And I was like, Oh, this is fun for me. Go ahead. Explain why you don't like me. And then she did. And, and then she ended up liking me. And I was like, Okay, thank you. So I told her, that I just think you need to be straightforward about this stuff. And that you need to feel like the person you're listening to understands. And then and that sort of has to do with, like, you have to speak with an authoritative confidence. You know, like, either I understand this, or I don't if I don't understand that, then I'm here to commiserate with you, which is not going to help you, you know, beyond that commiseration. But if you? I don't know, I just I know how to do this. I don't think that that's a bad thing to say out loud. You know what I mean? And I feel confident about it among most of the decisions that need to be made. So anyway, I'm glad cuz I was scared Janet. Church, you said church, she said Texas a couple of times. And I was like, she's not gonna lie to me when she got to the spot. So I was like, I'm all beat up now. My like, now I got my hands up. I'm waiting to get hit in the face. But I'm glad you liked it. I'm glad you listened to those people. And thank you to them. Yeah, seriously, I tell people all the time. The podcast grows because people share it. Like I don't, I don't pay for I couldn't afford to and I don't have marketing. Marketing a podcast is not the way to make it grow to begin with it's word of mouth. And so if people don't take the time to tell someone else, it just kind of languishes. But instead, today, September 30. And this was the most downloaded month in the history of the podcast this month, had more downloads by almost 100% Then did 2018. And it almost this month almost had as many downloads as 2019 In total, crazy yeah, I feel it's crazy to It shocks me every time I say it.

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Later today, head over to touched by type one.org. Check out their programs tab to learn more about what they do. Everything from their annual conference to their awareness campaigns, their dancing for diabetes programs, those DI boxes, and the new golfing for diabetes event that's coming up very soon. Touched by type one.org. So there we are. We're friends. Now I'm your walk. You don't talk to me while you're walking do

Janet 33:18
I'm not walking?

Scott Benner 33:21
I mean, I mean, generally when you're walking and listening, you don't speak out loud to me do

Janet 33:25
I? Typically not? Yeah, but I giggle a lot because that's why I think we would have been friends in high school because your movie quote or you'll say, you know, referencing movies? And I'm like, Yeah, we're totally in the same timeframe.

Scott Benner 33:39
Oh my god, I always just imagine the younger people are like, they just bear down and think they said my a onesie, you'll get better. I'm just gonna make it through this. Anyway, well, that's really cool. But does it translate to your son? Because he's managing himself mainly. And oddly enough, he is sort of has my vibe it is sort of like just use more or something like that. Yeah. So but how do you get the information you're finding to him? And how much pressure Do you feel to do that before he leaves for college? Yeah.

Janet 34:10
He, at the first at the onset, once I started listening to you, he was pretty open to i Listen, when I learned today, you know, and I couldn't get him to actually listen to the podcast. Now on a couple of occasions. If I had him trapped in the car. I would I would put I'm like, okay, hear me out. Let's just listen to one kind of thing and but where I knew that it was getting through to him, because you know, a lot of times I would just get the grunts back like Uh huh. Yeah. Okay, whatever kind of kind of things that when I knew what I was saying was actually seeping in was actually at our first diabetic counselor session. When she made a comment about you know, let's look at our numbers. Let's look at the range. And before I could say anything, he said, I don't want to go over 120 Or I want to set it at 120. And I'm like, oh my god, he was listening to me. Actually, he actually listened to something I said, and then so he might, you know, fight me a little bit on it on the on the surface, but ultimately, he definitely buys in to this philosophy. And I've heard him mentioned before, things like, well, I'd really rather you know, catch a low than battle a high and that sort of thing. So, you know, now that I'm not nagging him all the time, and he's in a completely different state. I feel more comfortable that he gets it now. Does he have all the fine tunings down like, you know, I was listening to your podcasts it aired, I think, last week, maybe with the doctor, was it, Addy, Dr. Salah Gowdy,

Scott Benner 36:01
he was really good, wasn't he?

Janet 36:03
Oh, he was fantastic. But I'm like, Okay, this is the Especially that last half when he was talking about the basil and, and everything I'm like, This is what I need to listen to. Because he that's the kind of stuff he still I think plays a little fast and loose. Sometimes when he's just like, Oh, I'll, I'll just throw more at it later, or whatever. So that's, that's kind of like the more fine tuning that I really want him to get to, so that he doesn't fluctuate as much as he does sometimes, especially. And that's actually one of the questions that I had come on to me during that Dr. oddies. podcast was he was talking about getting it straight throughout the night, that Basal rate straight throughout the night, that way, you kind of reasonably know that you've got it. Right. And, and my thought process was, yeah, but he's in college staying up till 3am eating pizza, you know. So

Scott Benner 37:04
I do you just go to whatever his sleeping time is like, the idea is that, first of all, I have to tell you that when he said that, I was so proud of myself, because I came up with that thought by myself without talking to anybody else. And this guy seemed brilliant. And anything he said that I agreed with, I was like, Oh, it made me feel very good. Anyway, yeah. But yeah, so you just want like, away from Bolus or active insulin? How does he sit stable, and then nighttime ends up being the easiest because, you know, you imagine your stop eating at some point before you go to sleep, and maybe you can even watch it from like, 2am to whatever, you know, your son shouldn't be growing too much anymore. Right. So whatever works in that space is kind of a good jumping off point for other times a day, I think is the idea. But I hear what you're saying. He's probably up till two in the morning. Is he a freshman? Yeah, he's

Janet 38:00
a freshman. Yeah,

Scott Benner 38:01
they don't, they don't go to school even barely. They just, you know.

Janet 38:07
Say, I'm really proud of this kid. He's actually he called me in a panic, like three weeks ago, because he overslept for a class and was late. And I'm like, Well, the fact that you're panicked about that makes me feel good.

Scott Benner 38:21
I'm gonna, I'm gonna crap on your parade here for a second. I got that exact same phone call. When Cole was a freshman. I just woke up, I overslept. I'm really sorry. The class is 10 minutes into it. I don't know what to do. And I was like, Is there time for you to get to the class? He just Yeah, I said walk in and when he makes eye contact with you go, I'm sorry. And then sit down. Or excuse me, I was like, it's not a big deal. I was like, It's okay. And then a couple of days ago, Cole FaceTime me to say he wasn't feeling well. The the entire campus got sick when of course they were all reintroduced to each other after a year and a half. So they all have the same kind of sniffily head cold. And he's like, I didn't feel good. It's exciting. Go to class yesterday. I was like, Oh, I don't hear the same panic in your voice. Did when you when you were freshmen. He's like, I can make it up and I was like, Yeah, okay. Thanks. All my money. Every every dollar I make off an ad from this thing is just over at that college and he's like, I didn't go today. Yeah, that's good. Rest up, buddy. Once you're nice and fresh, don't worry. I'll just keep working. No, but seriously, I was very proud of my son that day to when he made that same phone call. I was like, wow, this is like, you know, either this means something to him or at least he has respect for us. Yeah, yeah. So

Janet 39:48
definitely so Oh, but he's, he's really doing He's really doing good. I think I'm probably struggling the most because I don't have that. You know, I was making I was his little Isn't his food and I was in control of all that. And now I'm not in control of any of it, you know. And so it's, it's, that's the part that gets me the most and he's on Dexcom. But the past four days actually, while we were talking, it just shot back on. For the past four days he had, he hadn't basically called for a few replacement ones that he needed at they had like, either had malfunctioned or whatever. And so he ran out of them. And so he had like one left until he could get his new prescription. And he was just going to wait, hold off a few days before putting it on. I was like, are you okay to fingerstick? In again for a few days? He's like, Yeah, I'm good. I'm good. You know, but me, I'm like checking my phone twice a day hoping. The darn Dexcom back on and sure enough, it just right. As we were talking, I got a high glucose notification. So apparently is back on.

Scott Benner 40:58
That's good. Did he put it back on? Do you think he do you think he was just looking to be autonomous for a couple of days?

Janet 41:05
I don't know. i He, I think that that's a possibility. That's a possibility of him. Just kind of taking a break from mom in his blood sugar kind of thing.

Scott Benner 41:16
So you did indicate earlier that you're tracking him? I'm assuming through Find My iPhone?

Janet 41:21
Yes, yeah. Actually, we have the live 360.

Scott Benner 41:26
Okay, whichever one you're used to

Janet 41:27
find my iphone works. When we get the low notification in the middle of the night. We have had to call him a couple times. And if he doesn't answer his phone, send that then we ping him on Find My iPhone. And that always wakes him up.

Scott Benner 41:41
I've done that to Arden while she's in school. And then I get a text back. What are you doing? That's so loud? I'm like, You should have answered me. I didn't hear it. I'm like, Well, you heard that. So we're all good. Now don't worry about stop yelling at me and Bolus. We haven't done that in a while, of course, because you know, COVID. Well, is his plan. I mean, it's such an unfair question, because he's a freshman. And I still my son's a senior and I don't, he's got a degree in a, he's gonna have a degree in A minor. And I still don't think he has, if I asked him what he want to do for a living, I don't know that he would have any answer for that. So but is your son shifting his focus? Or is he going to put his head down and try to run through that glass ceiling? Or what's he doing there?

Janet 42:25
You know, I don't know. And I don't know if he knows quite yet. I think that I think what he's probably going to do is finish out college and then pursue, if he chooses to try then try for a OTS officer training school and go through that way. I think, I don't think he's going to try and join an ROTC program or anything. But, you know, I'm wondering if this is just where he needs to be. You know, he's always my husband has always been very military and very short hair, and, you know, just fine in the uniform, whereas Leo has always been more of a of a freer spirits, you know, he's got a beard and he's got he's not clean cut, you know, and he's, he's more of his just express myself wearing, you know, taco cat T shirts, or whatever. And so I never really saw him want to be in the military as far as he'd have to shave. And you have to follow these rules. And he's always kind of, you know, he's a good kid. He follows the rules for the most part, but he makes his own way. He definitely has his own way of doing things and they work for him. And so I don't know if this is maybe something that's more than that he'll Jive more to on this end, maybe still working with military but not actually in the uniform kind of thing. Or he could choose to hey, let's I do want to continue to pursue being a pilot. So yeah, no, I think he's, I think he's just kind of feeling it out right now.

Scott Benner 44:12
That's perfect. I would guess too, even if he felt like maybe even if he just felt like a little pressure like this is what we do. Maybe that releases him from that even you know what I mean? So I'm sure it'll be tough he sounds like a great person. So I'm sure it'll be good you agree with me about a lot of stuff so that makes me like you and then that makes me feel good about your kid. So see how easy it is to win me over just the gray that's all so with it so you put all this effort into understanding diabetes and then the diabetes left did right feel more abandoned by the your kid go into college or that task being taken from you?

Janet 44:56
I don't know cuz I still I still listen to your podcasts even though No, I've heard you say before that there's like a six month limit almost when people feel like, okay, I got it. And then they might kind of go, you know, once they feel comfortable that I haven't, I'm not there yet, I still want to learn and in finding, you know, listen to more stories, and I love it when you have the doctors on and the Dexcom CEO, guys, I love those, those are my favorite because I just feel like that's some at least some more information I can pass along to Leo, I feel like I can't kind of mess with his day to day stuff anymore, because he's proven to me that he's still alive after a month of college, and I'm not there. So he's proven to me that he can he can do this. I think. But when I hear from like the doctors or that kind of stuff, and I have like a nugget of hey, guess what's coming down the pike, you know, and he's more receptive to listening to that information for me than he is me saying, Hey, have you Pre-Bolus lately, you know, kind of thing. So. So there's that. And, and another thing that I keep kind of harping on him a little bit is because he's in this extended honeymoon. I mean, he if he goes above 200, I freak out, because he very rarely, if he goes above 200, he just like spikes up there and goes right back down. We have never battled the 300 400 500 that I hear described on your show. We'd never been there once we got out of the initial hospital visit because he was in the eight hundreds at that time. But But since then, we've had loads we've had to lose all the time, because it's like he's he's doing okay, doing okay in range and range. And then his pancreas wakes up and decides to spit some insulin out. And then he dips. So I've always been more fearful of the lows. I've never really been worried about the highs at all, because we just haven't battled them that I know, eventually, they're coming. And so that's kind of my little thing with him. Is that, okay? Remember, what you're doing now won't always be the case. You know, it won't always be the case that a pin will last you over a month and you have to throw it away before because it's, it's expired not because you've finished it, you know, this is insulin needs are still really low. So

Scott Benner 47:25
he's gonna somebody's gonna steal those training wheels off his bike in the middle of the night.

Janet 47:29
Right and that's that's my fear is that he's resting on his laurels because he's got this I got this mom I got this. Well, eventually, they're gonna they're gonna, it's gonna it's gonna change have you?

Scott Benner 47:40
Have you done a good job you think of explaining to him that this is just the beginning and that he's getting help from the pancreas though. Yeah, he knows

Janet 47:49
he, he, he's pretty he's pretty aware of all of it. And he he kind of knows the the biology of it about how his you know the beta cells and all that he kind of he gets it so and he knows that eventually like randomly if he has been kind of trending high a little bit and I'll tell him I was like well do you need to maybe increase your base a little bit or maybe increase your carb ratio he'll he's made comments of I wonder is this it? Is this it? Is my pancreas finally gonna go could put now as this it, but then he'll make some adjustments and it goes kind of back to the way it was. So he's aware of it?

Scott Benner 48:35
Well, that's I mean, all you can ask for it's going to be a shock. Listen, I mean, I've seen people over and over again, they get knocked over by it at first because it's a big adjustment. It doesn't you don't expect the adjustment that's coming even if you're even if you're expecting an end to an honeymoon, you don't expect it to be so drastic, you know, I know for parents of little kids, it's hard for them to go from like point one five an hour to point four. They feel like it's like all the insulin in the world. And for an adult How big is your son?

Janet 49:09
He's a he's a big kid about 181 90 He was a wrestler, he I mean, he's just he just a very big kicks

Scott Benner 49:18
junkie. Yeah, he's gonna need some insulin at some point. And if the amount is if you can stop yourself by being shocked by the number and just meet the need, it's much easier and maybe he'll be okay with that. Maybe he's not going to be put off by the number. You know, just be able to adjust and maybe it'll happen during a break. That would be nice or summer when he's home. That would be nice. Yeah, you could crawl back up his button take care of it

i i cried pretty extensively when I dropped my son off at college, and I'm preparing to just martyr myself when Arden leaves I'm just gonna, it's gonna climb to the top Up the hill and, and well until people come and stone me to that

Janet 50:05
idea that was that was a rough drive and not only were we very good Alright, that was a rough, rough drive because I wasn't we weren't dropping them off at Texas. I felt like you were leaving him we were abandoning my child in Texas and driving to Ohio. That was like a that was tough. That was a really I mean, with my daughter dropping her off. It was hard to of course, she was our first but we lived five hours away at the time. And you know, now I had to jump on an airplane to go down there. And so yeah, it was it was a rough rough drive. Walking away, you know? And

Scott Benner 50:45
do you think you had a little the mother and son thing too? Oh, yeah. Yeah. I can't tell what that is. I don't know what dastardly like wiring isn't a mother. But I mean, I first I thought it was because Cole was older. And then I don't even know what it is. Like, I couldn't tell you like Kelly loves Arden completely. But I mean, I feel like she'd pause before murdering you if you came after Arden. But if you can't, like at least she'd be like, it's gonna be wrong to murder this person. But I have to because they're going after my daughter. But if you came after my son, I don't even think there's a mechanism in her brain to make her think. And I don't even I can't understand what that is. But it seems real to me.

Janet 51:27
So, you know, and I, because mine are flipped because my daughter is my older one. Um, just for us, my daughter and I are very similar. We are similar personalities. We think alike. Because of that we can butt heads. So you know, but also she just she always just she was ready. She was ready to go. I saw that she was ready. It was hard. I cried many tears. But she was there she was she was it. She was doing it. You know, with Leo? Yes. He's always been my baby, of course, because he was the second born. But I think it was doubly hard. Because the whole last year, you know, my daughter was away at college. My husband was deployed. And it was just Leo and I, it we were like roommates, we you know, we kind of developed this in diabetes hit. So we also had that to work through together. So we really developed a very tighter bond this last year and in the fact that that I think that added to it as well. Of not only is he my boy and my baby, but now I have to leave him and abandon him in this place far away from me where I can't keep him alive.

Scott Benner 52:47
Was your husband in a war zone? He Yes, he was. And and oddly, he might have gotten the he might have gotten the happier end of the stick. When you're trying to figure out diabetes, I'm assuming I'm assuming that you had at least one phone call where you told him how hard this was. And he said, I'm I'm flying a jet in a war. And,

Janet 53:09
well, he wasn't flying. It was a kind of flying job. But but you know, I actually felt sorry for him because he, you know, as much as out of control as I feel like right now, with Leo being so far away for me. He, my husband had struggled a lot with being away during this that time. I mean, he really couldn't do anything to help and he could listen to me, but he hadn't been able to immerse himself in the whole diabetic vocabulary. So he was barely hanging on to what I was trying to tell him. And then he in turn, didn't know how to help me. And you know, outside of just letting me cry and telling me he loves me that it's gonna be okay, you know. And so he really felt it was just awful for for him. He felt like he was so far away and he couldn't help us work through this. And you know, when I think it really first hit home when he when he was home and we were actually in the middle of our move from Texas, Ohio. And he was right, Leo's low alarm urgent low, came across in the middle of the night, you know, and, and so I'm like, up like shot and in rest is grabbing the phone and trying to you know, figure out, you know, let's call him He's not answering his phone and, and then, you know, it turned out to be a compression low, but me at the end of the day, you know, he wakes up he's like, oh, yeah, I'm all good. It's fine. I'm going back to bed. And you know, but we're so awake. After Leo goes back to bed and, and, you know, he just looked at me and he was just like, I'm so sorry. You had to do this by yourself. I'm so sorry. You know, because he was just now starting to experience what I had experienced for the whole year. And it was really hard on him. It was really it was really hard on him to deal with that. Because you know, he's, he's my rock, and all of a sudden my Iraq is in Iraq. And

Scott Benner 55:19
you're trying to name the episode?

Janet 55:21
Oh, gosh, no.

Scott Benner 55:24
Because I'm very lazy about this. And I will obviously just go with that if if it needs to be, well, no, I can't. I can't agree with you more honestly, that that helpless feeling exists when you're there. But But putting that kind of distance between it. I can't imagine how that must ratchet it up. Yeah, and, and vice versa, too, right. Like, now you're aware that he feels bad, he's aware that you're struggling, neither of you can help each other he can even learn about diabetes. And then he understands to that time is going to take away and before you know it, your son's gonna be off at college. And he might never have that. That connection of understanding with him. You know, and and probably had to listen to you talk about some guy on a podcast over a scratchy phone call, which I'm assuming was really irritating. I get notes from guys sometimes that are like, you know, I can't take your my wife telling me about you anymore.

Janet 56:27
It's a good problem to have there right.

Scott Benner 56:29
Now for them. They're irritating for them. Yeah, so I just, you know, being overseas like that? I don't know, I have no context for that, obviously. But it sounds just extra difficult. It really does. But he's it. But it sounds like Leo's doing well, it sounds like he's aware of what may or may not happen. Are you concerned about drinking, do you think he's going to drink

Janet 56:55
he's actually, he's got a much better head on his shoulders than I do sometimes about that stuff. He's really good with self control. You know, us actually, as living in Belgium, the drinking age was 16. And so, you know, he's had, he's had a beer, he's, you know, we've, it's, we've never, we've never been a never, never, never, we've always been a, you need to do this, if you're going to do this, you're going to responsible, you have to be responsible, and you have to know how things affect your body. And, you know, sitting on the couch is a lot different than being in a bar somewhere. So we've always just been very realistic, and just know, know yourself and know who you're with, and be responsible. So that's always been our mantra with that, because I I did not follow the rules when I was in college. And so I can't, I have to know in my heart of hearts that they might not either. So we've always tried to take that approach of you need to be careful, always. And he is actually he's, he's very responsible. With it, I I'm not going to hold any, you know, imaginations that he's not ever not going to. But I did have the, the diabetic counselor, walk them through it, you know, like, if you do choose to drink alcohol, you need to do A, B, C, and D. And you need to be very careful, and you need to eat and you need to you know, keep your alerts on and don't turn your phone off and all these kind of things. So we've talked about it, but I definitely say of, of all the members of our family that could would be the most responsible in that aspect. I think he's he's, he's it so

Scott Benner 58:49
I gotta be honest with you. I was hoping you would say the guy flying the plane but I understand what you're getting at.

Janet 58:55
Well, that's what the bottle was throttle rule is

Scott Benner 58:58
that sounds like a thing. Do you it is a thing.

Janet 59:00
It is a thing. You can't drink a certain amount of time before you get into the start the process of the plane, anything with the plane so they call it bottle the throttle?

Scott Benner 59:11
Do you guys have a private plane? Like do you and your husband go out on weekends and things like that?

Janet 59:16
We do not but that is on his bucket list.

Scott Benner 59:21
That's gonna be your retirement is him flying you places and seeing taking a sandwich so you'll get tired of that. Okay, that's not the point. That's

Janet 59:28
the great irony is I'm scared to fly. I do it. But I I'm nervous the entire time.

Scott Benner 59:35
How are you with your husband flying? Did that ever? Does that bother you? Was it something you just give away? Like being a cop's wife or something like

Janet 59:41
it took a long time. It took a long time it when he was back in pilot training. I was always a basket case. And like I wanted him to Well, this was before cellphones, really but I wanted him to like, you know, just give me a quick call when he landed. I was a little more you know, freaked out about it. Then now I've really, I'm, I mean, I trust him. He's a good pilot, I know he's gonna be okay. And I just, you know, I leave it at that. But it was a journey, it took me a while to get there. And there's always little, little, you know, whether they call him when your old house tales, wife kills or whatever, it superstitions, things like that. But you know that we never break their taboos that that you don't do. Like, once he steps to his jet. That's it, I don't call him I don't text him. He doesn't call me he doesn't text me. His brain is solely on his mission. And there, you know, fast forward. Gosh, it was in his last assignment, I was doing a tour with a group of ladies at the squadron. And as we entered into this, I call it the stinky room because that's where all their gear hangs. And, you know, like, it's like a big, massive locker rooms smell you know,

Scott Benner 1:00:56
a car smells when calls home playing baseball.

Janet 1:01:00
And as we're walking through it, I see at the end of the room, I see him and he's he's putting his he's getting his gears, he's got his G suit on, he's putting his getting his helmet all ready to go step to a jet, and we lock eyes. And I like almost had a panic attack. Because once he steps to the jet, you're not supposed to see me or think about me, you think about the mission, you know, and it's always been our little thing. And I spent the rest of the day freaked out like, something that happened is I when he came home, he was like, It's okay, I'm fine.

Scott Benner 1:01:34
That's when that's when it's easy for him to forget about you. He was like, Yeah, that's fine. I won't worry. I'll tell you. We're in Lieberman. I don't know if you know who that is. He's the Pentagon correspondent for CNN. He also has type one. And he's a he's a pilot too. And when he was on the podcast, we learned that his parents and where his plane is very close to my house. And he was just, I think he was being polite. He's like, I'll take you out one time. And I'm like, no, like, I don't want to do that. I don't want to go up in your tiny little plane that you were able to afford on your own. That seems wrong.

Janet 1:02:09
Yeah, he's had to kind of walk me taught me that taught me into it over the years. And he's. So I don't know if you know, financially, it'll ever be feasible. But he's he wants to get his private pilot's license. So that wants our time in the Air Force's is over that that is an option open to him. So he's excited about it,

Scott Benner 1:02:31
I would start flying jets and then just you guys could just constantly be on vacation, you probably could sell your home, you could just bounce around the world for a while. That'd be fun. My last question for you. And then I'm gonna ask you if there's anything we haven't talked about. But my last question for you is how engaged in diabetes? Do you think you're going to be over the next handful of years with Leo?

Janet 1:02:56
Oh, I think as long as he's open to me still being engaged, I can't see myself exiting that at all. I think that at some point, in some minor little way, he appreciates my nagging. Or at least he appreciates me doing all the research and sharing the the nuggets within that. So that he doesn't have to do it himself. I know I'm very anxiously awaiting the, the new the newest Omnipod and Dexcom. So that we can try the whole loop thing. I'm not quite comfortable enough with doing it the do it yourself stuff. I've looked into it. I've researched it, but I'm not that comfortable with it yet. I think I'd rather wait until it's pre packaged for me.

Scott Benner 1:03:51
Yeah. On the five you're talking about? Yeah, yeah.

Janet 1:03:55
Yeah. So I'm looking forward to that. And I, he doesn't really he doesn't have a stigma about the diabetes. I know. A lot of kids do they either hide it or don't want to be very open with it. And, and he's just, he doesn't care. He's like, and he actually hates the term. Or he doesn't prefer the term diabetic, because he's like, I'm not a diabetic. I'm Leo and I happen to have diabetes kind of thing. You know, so he doesn't, he's just like, it's okay. It's just part of me if you see my pod, fine, whatever, I don't care. So he's very good about that. And so I don't think he'll ever kick me off of his Dexcom or anything like that. But I think as we progress and as he matures and grows and my hope is that he does get a little more involved and still continuing to learn about it because because of the the new things that are coming down, you know, right now, it's all me saying, Oh, guess what, guess what's coming or or that kind of thing. And I hope that one day he takes that on. But I really can't see myself really stepping out of it all the way unless he really wants me

Scott Benner 1:05:08
to pushes you away. Yeah. Well, that sounds about like how I would have answered. So I think it's great. I think, I think that I'd love to talk to Leo in a couple years after he's used on the pod five for a while. And that would be really interesting. For a person who's newly diagnosed in college to start on that it'd be, it'd be a good information to have at some point. So Leo, if you're listening, just, you know, hit me up, like in a year or two.

Janet 1:05:35
We'll well tell him to I don't know, I still he's still, I still can't get him to listen, you know, on his own. So maybe,

Scott Benner 1:05:42
listen, I wouldn't if I don't know if I would listen to the podcast, although I have to tell you something. And and then I'll let you go. I know I have you over time. Earlier, you talked to you referred to when I said people seemed like a six month of life. That was something I learned from the internet from social media that I just assumed would translate to the podcast, but it doesn't seem that it has. So yeah, I think there's something about listening to the stories that's entertaining outside of diabetes. And I have to admit that a couple of the podcasts that I listened to were on hiatus this week, and I listened to my own podcast once and when I got done, I was like, This is good. I was entertained by it. Like it kept me It kept my attention for the hour. And so I'm not seeing people drift away from the podcast the way I see them just away from online help. Okay, so that's, I, you know, that's good. I have my fingers crossed. I think that's why the, the numbers grow. Because people hang around to listen to other people's stories, too.

Janet 1:06:42
You're not losing the old ones, you're just adding new ones just adding more.

Scott Benner 1:06:45
So you know, I like that you're listening. And there's people who listen, who don't have diabetes. There's a person I always think of who listens to stay close to their kids. You know, so there's, there's a, there's a lot going on here. So I appreciate that you found it and that your friends, or your acquaintances, actually, I meant to give you props earlier, you did something difficult as he was diagnosed. And I don't know if you realize it or not, but people like offered you a phone number to call like, here, reach out to me ask me questions. And you actually did it. You have no idea how often I get to like a note from a friend that says I gave your cell phone number to a friend of mine, and told her to reach out to you about diabetes, and they never reach out. So it's a big deal that you were that you did that I think I

Janet 1:07:36
wonder? Well, I was I was floundering. I mean, I just you know, I was I just was at that point of, okay, this person can help me. I mean, I call you know, the washing machine repair man, if I needed my washing machine repaired. So I need some help here. And you know, this community has been fantastic. Everyone's been very opening and non judging. And here's what I can offer you and and yeah, it's it's, it's, it's really amazing how many lives type one does touch. I mean, it's like you don't you don't even think about it. And then all of a sudden, they're like, oh, yeah, my daughter, oh, yeah, my son or my aunt, or whatever. And you've known this person forever. And you never knew that. So

Scott Benner 1:08:23
now, I'm just telling you from my experience that you had the nerve or the the instinct to reach out. It's a big deal. A lot of people ignore that when people lend a hand. They don't sometimes take it. So that's cool. I was I was I meant to say it when you were talking about and the conversation just kind of got past me. Also, you mentioned that Leo ran out of decks comms and while we were I wrote down a note for me to call. And because I realized aren't only has two left, like, I have to do that. So I appreciate that as well. Is there anything that we didn't talk about that you were hoping to? Oh,

Janet 1:08:57
I'm sure there are but I don't know. I think that I guess that is another thing that me having to give up the control is Leo is now responsible for calling and getting his own things. And that for me is another difficult thing to let go of. Because I'm you know, I have all my ducks in a row and and he shouldn't run out. He should have called already. He's almost running out. Well, you

Scott Benner 1:09:24
can have my kid if you want. Who sent me a note and said I'm out of this. Get me more not Yeah. Tell me how to find it. That's for sure. Yeah, but now I understand. Are you kind of Taipei to begin with?

Janet 1:09:39
Oh, yeah, yeah, I own it.

Scott Benner 1:09:43
Well, you need something else to tell what to do. Call your daughter. Call your daughter up and fix her life. Did you say were you getting ready to say my dogs don't listen to me?

Janet 1:09:58
No dogs don't listen to me. They're so I need to find I need to find something.

Scott Benner 1:10:03
Do you think you'll ever be able to just let it go?

Janet 1:10:06
Oh, I doubt it. I doubt it. I mean, the Janet, you're speaking to you now and the Janet a year from now are completely two different people I have, I have learned to relax. So much more, but it's still I'm on edge a lot. You know, definitely the Dexcom totally helped help with that. But then sometimes you you know, when you get a low in the middle of the night, and then you call him and he's like, Oh, I just checked, I'm at, I'm at 101, I'm fine. So it's, it's that part of it is what scares me the most, because I want to trust the Dexcom, which I do 99% of the time, but then it'll still wake me up and freak me out in the middle of the night. And then it was a compression low. So and I get it, it's a it's a machine things are gonna happen. But I think me, me having to put so much trust into everyone else. And I have zero control is probably a struggle, I'm probably never going to get rid of completely.

Scott Benner 1:11:07
You might be surprised. Yeah, maybe the g7. I'm hoping that the flatter aspect of the g7 might keep it from experiencing compression lows the same way. I don't know if it will or not, but I'm hopeful about that.

Janet 1:11:20
And it's smaller, I'm liking the fact that it's smaller, because Leo does have some issues with the adhesives, you know, of not sticking on or sometimes he'll say, Oh, is this a thing, sometimes he'll he puts it in too hard or too deep, or it draws a little bit of blood and then that blood will just seep into the surrounding adhesive, and then the adhesive won't last

Scott Benner 1:11:46
I would not think of it as being too deep. He probably just nicked a vein, or a little blood vessel I should say. And that does happen. But once it's once it happens, you can kind of rinse it away before it gets to the before it gets to the adhesive. So we just I wake it out with a tissue like I twisted clean tissue up and just stick it in there and wick the blood away and then the bleeding stops before it gets to the adhesive. I have seen people get more of a gusher and they'll just kind of jump in the shower real quick. And let it like like let water run through it until the bleeding stops. But also Dexcom right now, if you call them he'll they'll send him overlay patches to put over it that work really

Janet 1:12:29
well. Yeah. And we've done that we've done that as well. Okay, it's just gets his skin gets so irritated at certain times. But I think

Scott Benner 1:12:36
if I'm remembering the conversation correctly with the g7, the overlays are just going to come with it. So you won't even have to ask for them separately. It'll just be there. Oh, that's perfect. So that'll be cool, too. And that was pretty much it.

Janet 1:12:48
You don't have to deal with my impatience.

Scott Benner 1:12:51
We were really terrific. Were you nervous? We were okay.

Janet 1:12:55
I was nervous. I was nervous is actually really surreal. Like having you talk to me hear your voice in me actually talking back because I'm so used to hearing your voice talking to somebody else. So it was really surreal. I was nervous. But I'm I mean, I've done a lot of public speaking so I was I wasn't shaking or anything. But yeah, I was I was a little apprehensive,

Scott Benner 1:13:21
either great. I thought whatever level of nerves you had you pretty much held on to the entire time. But they didn't that they didn't seem bad. Like they weren't overwhelming. But that's good. I think you're great.

Janet 1:13:32
That way. Yeah, I do tend to talk fast when I get nervous though. So I don't know if you're gonna have to slow me down or something.

Scott Benner 1:13:40
That's great. Are you kidding? I love when people talk. I'm always slowing myself down thinking like, Oh, don't talk so quickly. And you were going like a mile a minute. I was like, this is fantastic. Plus, I didn't have to talk as much. This is like a like I showed up at work today. And somebody started doing my job for me. So it was perfect. Oh, well. You're welcome. Thank you very much.

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#651 After Dark: Recovery

Ashley has type 1 diabetes and is the mother of a T1.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 651 of the Juicebox Podcast.

Alright, let's see what's on tap today. We have Ashley, she has type one diabetes. She's also the parent of a child with type one diabetes. She is also in recovery. There is a lot going on here, in this episode of The Juicebox Podcast, I have to tell you, it wasn't until late into this one that I even thought to make it an after dark, but I think it qualifies. So while you're listening and trying to decide if I'm right, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please Always consult a physician before making any changes to your health care plan are becoming bold with insulin. If you have type one diabetes, or care for someone who has type one and are a US resident, please head to T one D exchange.org. Forward slash juicebox and take the survey. It will take you fewer than 10 minutes. And when you do this, this nice thing this survey taking. You will be helping people with type one diabetes and supporting the Juicebox Podcast T one day exchange.org forward slash juice box this episode of The Juicebox Podcast is sponsored by Omni pod. Find out more about the Omni pod dash and the Omni pod promise at Omni pod.com forward slash juicebox.

Ashley 1:48
Alright, hey guys, my name is Ashley. I'm here to talk with Scott.

Scott Benner 1:52
Perfect. Ashley, you're the first person to get it right. Don't tell the other people. That was excellent. What's your connection to type one? Do you have it? Are you the parent of someone that has?

Ashley 2:02
I have it? I was diagnosed in 2001. And my daughter was just diagnosed in August of last year. So 2020

Scott Benner 2:11
Wow. So you've had it for 20 years? Yes, sir. How old? were you when you were diagnosed?

Ashley 2:17
Seven or eight? Right around there?

Scott Benner 2:19
Wow. Actually, you're young? Yeah, I didn't realize how young you were.

Ashley 2:23
Yeah, seven or eight. And I don't really like remember diabetes? At all. In my childhood. You know, my parents controlled most of it. But like, I don't remember food restrictions. I don't remember, you know, any devastating things about you know, diabetes back then. Because tech and everything was not much different. Yeah.

Scott Benner 2:43
It just felt like a normal part of your life. And it wasn't, it wasn't very intrusive, or you just didn't think of it that way.

Ashley 2:50
I guess I didn't think of it that way. It just was something I had to deal with.

Scott Benner 2:54
Can I ask you did you have Did you hit any of this common speed bumps? High school years College? To start taking care of yourself? Did any of that stuff happen?

Ashley 3:03
I'm most definitely I've, um, I had a wild childhood. Not that I like grew up in a bad area or did bad things. But like, you know, I had a sense of entitlement. And I, you know, thought nothing could kill me. So I had, you know, I had a rough patch of fun things that could be an after dark episode. Well keep that for that type of podcast. But um, yeah, I ended up you know, getting clean. And I stayed like that for, you know, eight years I got pregnant in the mix. And then once the pregnancy happened was really when I cared about things.

Scott Benner 3:42
Okay. So I'm just going to pick through this lightly, because I feel like you are okay to talk about it. But you don't want to go too deeply. So an addiction

Ashley 3:53
and addiction of more anything, really, whether it was more, more drugs, more sex, more food, more weight loss, more, anything that I could have more of, is what my problem was,

Scott Benner 4:06
I understand. Well, you know what, it's funny. I there's this person who jogs through my town, and they look like a human muscle on top of bones. And no matter when you're driving, you see this person running, and I don't know them. But I always imagine if they weren't running, they'd be addicted to something. Like, that's just the vibe I have from them like that. Like, I know, I don't know that. It's a ridiculous thought to have, but it feels like a replacement hearing. I definitely got that 100% Feels like that. Like I just I think if I lock this person in a room with any of the things that you just mentioned, they'd be like, Why don't anymore because I'm going to do heroin, you know, like, and I'm going to do a great and 100 miles an hour, the best heroin user like I feel like that's the vibe is that how it felt like, like that, like, just, yeah,

Ashley 4:55
just anything, whatever. Whatever made me feel good. I wanted more of so it could have than a person that could have been really anything, you know, when I was younger, it was books. You know, I would stay up late in the middle of the night with a flashlight reading books. I liked Mary Higgins Clark. I was reading that in like seventh grade. Why? I don't know. But I did.

Scott Benner 5:14
Actually now making every parent of a reader worried.

Ashley 5:19
No, it's fine. It's not, don't worry about that. It's fine. Reading was good. I just, I didn't myself have any other source of expressing things. So I took everything to the extreme.

Scott Benner 5:32
This was not because of like a, like, you weren't filling a void, there wasn't something that you've noticed now as an adult that was missing. Oh, of

Ashley 5:42
course, we, you know, I've unpeeled all of the onions if you wanted to unwrap that route and got, you know, maybe not too close, but close enough, I think to realize some some patterns and things like that to change my life, you know,

Scott Benner 5:55
okay, well then swing around to how did that impact type one did it just like, if I'm, like, a million miles an hour, not gonna take care of it.

Ashley 6:04
I'm, pretty much I ran my Basal really high I didn't when I was when I was younger, and I was rebellious. And whatever the case may be, I ran my Basal really high because I was just not correcting. I wasn't carb counting. And I just did whatever I did when I look back on those things. When I see now like, I took a I went on vacation recently, and I took a walk right? Maybe it was like a half mile walk and my shoulder dropped. You know, because I didn't tempt my Basal. I didn't do the things that I would normally do now. And like my sugar tanked. If I was I don't know how that didn't happen to me when I was a kid, but it just never happened. Like I was never, maybe once I was in the hospital for DKA. And I've never used glucagon or any of those things.

Scott Benner 6:55
So yeah, you were like jacking up your Basal insulin so that you can eat with impunity and not think about covering carbs or any of that stuff. So just this a massive amount of basil, that data. And then

Ashley 7:07
yeah, almost like I knew that I needed the insulin and I knew if I was going to be a jerk, I needed to do something about it. My mom was still test your sugar, prick your finger, test your sugar prick your finger, you know, but after 1617 She wasn't getting through to me.

Scott Benner 7:27
So So up until then it was she was just badgering you to check.

Ashley 7:32
Yeah. And then I hit 18. And she, she took and, you know, she gave me control. And like, you know, it was my decision. I was an adult. Like, if I wanted to do the right thing. It was my time to do so. Yeah. Like she let me you know, hit that bottom. And every bottom has a trapdoor. So like, I hit all of those bottoms. My sugars, you know, by a Wednesday was like 1314. Wow, just regularly, and I felt fine. So

Scott Benner 8:00
you're, yeah, well, because you titrated it up to that spot where your body was just like handling the mess really like it? Yeah, it was letting you feel like you were okay. Even though obviously you weren't

Ashley 8:11
exactly I felt comfortable with my sugars at 300 all the time, you know?

Scott Benner 8:16
So let's juxtapose this conversation on to a different one for a second. So now you have a child who has type one. Yes. Okay. How old were they? When they were diagnosed?

Ashley 8:24
She was diagnosed at six, or maybe five. She was diagnosed at five and then she had her sixth birthday. This January, we're seven. How old?

Scott Benner 8:33
Is she now?

Ashley 8:36
Six and a half. Okay,

Scott Benner 8:37
so not too long. So let me just ask you this one simple question. You're going to dump all of her diabetes care onto her when she's 18? Or will she be too young?

Ashley 8:47
Ah, you want to know what I am so very conflicted by it. I am so very conflicted by that because like, I want to, you know, be overbearing, I want to send the text messages, I want to do all the things that I'm doing now, right now, she has an under a six a one, say, within one year of diagnosis, she has no restrictions. She does whatever she wants. And she's fine, you know, but like, when she gets older, I I feel like I want her to have control and like make the right decisions. Because like it wasn't, you know, I wasn't coddled, and I appreciate not being coddled, you know,

Scott Benner 9:25
is it a personality thing? Like, I don't mean like, so. It might be Yeah, cuz like, what you're seeing is kind of my thing in the right context might just be seen as like, supportive. Like, yeah,

Ashley 9:35
I want her to be able to make the right decision, right decisions and make the right choice and things like that, you know, I'm not going to tell her. I don't have an answer for that question. If she asked me for the help, obviously, but I'm not going to force it on her. You know, she needs to be responsible for our own actions, but that's probably because of the time I did getting clean and sober stuff, you know,

Scott Benner 9:56
yeah, you have a different perspective. Because what I was gonna say is if it if it If it takes her till she's 21 and a half to figure it out, like there's I don't see the value in just abandoning her at a number. Do you know what I mean? Like saying, well, you're 18 you're No,

Ashley 10:09
I mean, my mom definitely didn't abandon me at a number. But like, she put doctor's appointments on me. She put my refills on me and things like that. Yeah,

Scott Benner 10:18
that's, that's reasonable. Like, I'm not Yeah, that's a completely reasonable way to handle things. I just think it's the management part of it. You know, like the, hey, Mom, I'm 20. Like, I can imagine Arden calling me being 25 years old and being like, I'm about to have a really complicated meal. And I don't know, 100% know how to Bolus for this. You know, like, Do you have any insight, and I don't know that I would be disappointed to hear that phone call. I think I'd be like, Well, no, I

Ashley 10:42
definitely wouldn't be disappointed. But if we flipped it from my daughter asking me and I asked my mom that question, she'd be like, Are you kidding me? I have absolutely no idea. Once I switched from shots, and they put me on a pump. I think I was diagnosed in 2001. So I was in fourth grade. By the time I was in seventh grade, is when you know, the school is changed. I went to middle school, and that's when I started the insulin pump. Yeah. So once I started the pump, I was kind of like, you know, somewhat mature ish kind of person. I'm so I handled all of the pumping. Right? So she at this point, has no idea how to handle that. And it's funny watching her with the kid. Yeah, I'm

Scott Benner 11:22
realizing listening to you. And thinking back on other conversations, that when that trans transition happens, from MDI, to pumping, if it happens at a certain age, the parents don't come along for the ride. That's really common. Like, it's like, okay, well, this is a new thing. She's old enough, or he's old enough to understand it. I don't need to understand it as granularly as I did this, this previous management style. Yeah, exactly. I think that's pretty common. How does this is going to be a little bit of a side road, but how does overcoming an addiction? Change your perspective on what people need to mature? Huh?

Ashley 12:12
All right, so I was trying to think of how it's gonna work out. So I took a second. So like, they teach certain principles, they teach, like going through programs, they teach acceptance and things that you can change and things that you can't change. And then it allows you to realize that you're not in control of everything. And there's other things that play and just like the common you know, I don't want to call a dog my style of religion, because it's not religion. It's not book like that. But like, the concepts that most dogma styled religions incorporated are things they just kind of lay out in simple form. So like, things like, Okay, I listened to an episode about that the Eminem kid, right? So if we want to pull that all into play, like, I like my coffee, every time I drink coffee, I had an issue every single time. So I could accept that there's an issue with coffee, what can I do to change it? Or how can I better it? Or can I just not do it? Right. So then from that point, it gives me decision makings and options and things like that, it doesn't make me feel so backed into a corner with things Gotcha.

Scott Benner 13:16
Okay, yeah, I just I'm trying to, like, the more people talk about things like this, the more addiction seems like an odd like, like the other side of a coin of control, like, you know what I mean? Like, I'm looking for something to control, I can control how much or how little of this I eat, how much or how little I run, how much or how little I'm high, like that kind of stuff. Like that seems like the control part.

Ashley 13:41
Yeah, then that's, that's my everyday life. Like, I don't obviously use anything recreationally and things like that, you know, I'm not the mess that I was when I was, you know, but all those things still come into play. I go through days. Right now we're doing an experiment. So my partner, I'm with a female, I've been with her since 2008. We had, you know, breaks in our relationship and things like that. But so regardless, my part, my partner is now wearing a Dexcom. So we've been you know, feeding her things and trying to see what's going on and you don't care and I totally lost when I was,

Scott Benner 14:19
that's okay. I happened to me too.

Ashley 14:23
I talked too much all the time. So we're doing that okay. So the control issue and the wanting more, that's where I was going. She's wearing the Dexcom and like, it bothers me watching a normal pancreas work right. So now I'm being more carb conscious and making you know, better timing decisions and things like that. And we can even bring it to like when the baby was diagnosed, she was diagnosed that like a nine point something. The next couple of months, she came back down to under a seven. So I was like, How does she have better effing blood sugar's than I do? Like I'm handling everything. Why is this better for her what was the so like that ego and the competition and the wanting better and like the that, that that addiction concept like she's doing better than me? That's not possible, you know? So then I started doing more and more for yourself, for myself. Exactly

Scott Benner 15:17
right. That's fascinating. It is fascinating to hear that if you see someone without diabetes wearing a Dexcom, you could be like, angry about

Ashley 15:25
it. And not that I'm angry, but like, I want to do it better. I see. Okay, like when you were talking when you were the Dexcom and you were comparing it with, you know, your daughter's information and things like that. You were mad that you couldn't Pre-Bolus Yeah. So like, I watch my partner and their body pretty much instantaneously. Pre-Bolus is them. The minute I start saying, like, I'm gonna cook dinner now, her sugar drops, the minute she starts eating, she drops a little bit more, and then the food picture back up. And I think that's wild. Like, how come my timing doesn't work like that. So that's what I'm doing now.

Scott Benner 16:02
Crazy. Do you hear Jenny say that your body through like smells? And like it anticipates that you're going to eat? And when you have a when you have a healthy pancreas, like it'll start to isn't that crazy? Like it starts to break down like that.

Ashley 16:16
I definitely believe that like how the brain can make a woman pregnant, like look pregnant, appear pregnant, have all the pregnancy symptoms, but not actually be pregnant.

Scott Benner 16:24
What do they call it? Is that still called hysterical pregnancy? Or do they have they changed that? That sounds like people I

Ashley 16:29
don't know. I would call it a placebo pregnancy. But I'm not really sure about that.

Scott Benner 16:33
I might be getting this from a episode of mash in the 70s.

Ashley 16:38
So Oh, you're aging yourself and man.

Scott Benner 16:42
They may have called it something different between. I'll tell you what hysterical pregnancy is. I can look it up. thing here. I think that's what it's called.

Ashley 16:51
Oh, I'm on it right now. And stearic or pregnancy false pregnancy. Yeah. psuedo sucks. ISIS is this I don't know. I'm not pharmaceutical.

Scott Benner 17:01
It's crazy. Okay. All right. So just a real quick question, because you mentioned that your partner's female. Your daughter is yours biologically.

Ashley 17:12
Mine biologically? Yes.

Scott Benner 17:14
I just I was just like, did they? Did they adopt a baby that had type one diabetes? Because that's some random?

Ashley 17:21
No, I imagine that. No, I actually, we had a break in our relationship over a course a couple years. We've been doing this since 2008. And we were young, whatever the case may be. I was confused if you want to call it that. I don't know. But I met my daughter's father. And I was with him for a couple years. And then we had the baby tried the whole thing. It just didn't

Scott Benner 17:41
work. Gotcha. Okay. Do you still is he still involved in like this? Yeah.

Ashley 17:45
I mean, we co parent with him. I'm not gonna say that it's the easiest, but they do great. For what it's worth, you know? Yeah. Is that we Becker, but we Becker because we're axes, you know?

Scott Benner 17:58
I mean, why wouldn't you? I don't, I don't understand talking to people that you used to date. So it the only time when you have to was because of children. And I understand every time

Ashley 18:08
we're in like a giant group chat. We have one with me, him. His sister has parents, my parents, then we have one with me, my partner him and his sister, we do this whole silly diabetes talk thing that custody is a little silly. We both see the baby or the child. Every day, for the most part, I handle mornings before school, he picks her up, you know, after school, we switch around dinner, and then we do it all over again.

Scott Benner 18:35
Excellent. Really? Sounds nice. I mean, nice, you know, for the, for the situation.

Ashley 18:41
Yeah, for the for what it's worth, it works out great. We live maybe 10 minutes away from each other, you know, we do our best for what it's worth, you know, that's where we get along, when we have to we do joint holidays, we do joint birthdays. And you know, I give them diabetes, cheat sheets, and you know, the whole to do,

Scott Benner 18:59
how did you come to such a reasonable agreement?

Ashley 19:04
Because it's not about us. It's not about me, it's not about him. He comes to the house and my blood sugar will skyrocket, you know? 30 points just because, you know, he's pissing me off, but like, it's about the baby. It's about the kid. It's not about me. I can handle that, you know, rise in my blood sugar.

Scott Benner 19:23
I think so. Did you did was this a was this a joint decision? Or Did one of you was one of you the one to say, hey, this isn't about us. So we're going to just have to, you know, deal with how we feel and and handle the things that are right for her.

Ashley 19:40
Even before the diabetes that kind of just worked like that. Okay.

Scott Benner 19:45
All right. So you split before she was diagnosed?

Ashley 19:47
Yeah, exactly. We were split for like three years before she was diagnosed. Okay,

Scott Benner 19:51
I have to take a drink. I'm sorry. Hold on one second. Here. Okay.

Okay, before we restart, just because I I know, I know this and I can't pick through it for some reason. do two things for me say coffee, coffee, and then tell me where you're from, like what state or city or where do you think I'm from? Sounds very New York. But yeah,

Ashley 20:16
I am from New York. I'm from Long Island. If you weren't

Scott Benner 20:19
on Long Island, I was like baffled, so I didn't

Ashley 20:25
know that's me born and raised. Yeah, coffee

Scott Benner 20:26
and pissed off so far are like two of my favorite things that you've said. Just it's, it's I don't know if other people here but it's, I find it to be a fun effect. But you of course, don't hear no big deal. Do I sound like I'm from Philly to you?

Ashley 20:46
I don't, I don't really know. I mean, I don't know I work in a call center. Right? So I deal with people of all walks of life all the time. I can't pick out where anyone's from ever thought

Scott Benner 20:56
I get lost in in the, in the wondering sometimes even when I'm on the phone with somebody from like, inevitably, whilst while someone at a call center is looking something up online. I'll just go real quickly. Like, are you in Nebraska? Like how do you

Ashley 21:10
know I have absolutely no idea about those things. But for a fun side fact that has no diabetes relations. I used to do the translation calls for Spanish appointments and things like that. And when I would be speaking with Spanish patients that you know, I'm relatively fluent. They would ask me if I'm from Brazil, and I'm like, No, I was born and raised in America on Long Island, you know, just here I am.

Scott Benner 21:37
Can I ask you a question that since you said that, I always dream of having to voice actors, rerecord pro tip episodes? Is that an impossible thing to do? In Spanish for me?

Ashley 21:53
I am not. I'm not the one for that. I'm not gonna do it. But you could be able to do it

Scott Benner 22:01
just cost money, right? Like, I'd have to pay somebody pretty well into it. Because they'd have to, I'm imagining they'd have to listen with headphones on but then speak into a microphone. Is that?

Ashley 22:12
Yeah, I mean, I, you could just transcript it and just have someone speak read it? Yeah. Yeah. I don't like narrate it. I guess, like an audio book type thing?

Scott Benner 22:24
Yeah. I don't know if that would get clumped like I don't. My problem is that, you know, a would be affording the talent to do the job and be that I don't speak Spanish, so I wouldn't be able to QC anything that was happening. Yeah, I wouldn't know. You wouldn't be able to verify it. Yeah. Like, I could have two people looking at me and like, let's just drop a couple of really horrible curse words in the middle here. He'll never know, you know, so I wouldn't be able to verify it. But it is one of the things I think about.

Ashley 22:48
I could definitely try and figure a way out about that. I think a lot I stay up late.

Scott Benner 22:55
What are you thinking about when you're up late?

Ashley 22:57
Oh, I'm, I'm kinda like a type A personality to an extent. So I'm one of those like, I'm going to make a grocery list. I'm going to do you know, a to do list I'm going to do with this list I'm going to do with that list. And then I'm going to do it all on paper. And then I'm like, Oh, why am I doing this on paper? Let me do it all digital. And then like, you know, the first hour on paper, and then the next hour and a half put in a digital and it's just a hole to do.

Scott Benner 23:21
How does your partner enjoy that aspect of your personality?

Ashley 23:25
Ah, okay, organizationally wise. Yeah, I say it works out well.

Scott Benner 23:30
So she always has like a good list at the grocery store. Or do you?

Ashley 23:35
We don't really grocery store we kind of do the whole either P Potter, you know, do the pickup from the store thing. I hate going in the grocery stores.

Scott Benner 23:42
No one likes going in there. No, I won't do it. Okay, okay. So I just I always imagined when I'm leaving the house to go pick up a couple of things. Like as I walk past Kelly, now that COVID is here, and Kelly works in our dining room. I always like I'm like, I'm gonna go to the store. And then I wait because I'm expecting to hear a piece of paper rip off of a pad. And be like, here are the things that I have written down over the last couple of days that we need. And when she doesn't hand me one, it's off putting to me.

Ashley 24:11
That's how she feels sometimes. So she doesn't normally do those types of things. I'll do the big list. And then I'm like, here, this is what you need to do. And it's all mostly already saved on the you know, saved on the stupid app anyway,

Scott Benner 24:22
does that make you feel good to see things come off the list?

Ashley 24:26
Yeah, okay. I'm one of those like so. So I wake the kid up around like seven o'clock or so or maybe I Pre-Bolus or around seven then I get her up at around 730 to do the whole thing, but I'm up but like, most days, I'm like a five o'clock 530 type of person because I like the quiet. I like the house. You know, no one's yelling at me. No one's asking me anything. And I don't get foot on the floor that way. If I wake up wait and there's chaos and you know people are already asking me if things I'm maybe it's not fun on the floor but it just automatically the minute I wake up, it's just blood sugar. Rise instantaneous.

Scott Benner 25:05
Will you describe that when your ex comes your blood sugar can go up? Is it just yeah, that's it or like life like life stuff? You think

Ashley 25:13
probably, I mean, maybe. But if you're up more than likely anxiety and things like that, but, you know, if I wake up by myself and no one's asking me for breakfast, or where's this or where's that? You know? I'm like, Ah, right, good. No rise on my bookshelf.

Scott Benner 25:29
Interesting. It'd be You said you stay up late, but You're up early. How late do you go to bed?

Ashley 25:35
Maybe like 1130 or so. Okay,

Scott Benner 25:37
so you're getting like six hours, maybe five, six hours a night?

Ashley 25:41
Something like that on a good night.

Scott Benner 25:43
Gotcha. Okay, how about baby stays with you overnight?

Ashley 25:49
Not always five nights out of the week.

Scott Benner 25:51
How do you find man? You know what, I didn't even ask this. I can't believe on my half an hour into this. Let me ask you some more diabetes related questions. Pumping both of you one of you

Ashley 26:01
both of us pumping both of us on Dex comms? When we, when she got diagnosed. That weekend, my partner was away and I was at my mom's house. And she kept saying like, she's drinking a lot of water. She's drinking a lot of water. And I'm like, Shut up my like, it's, you know, it's August, she's thirsty. And I'm not thinking anything of it. And Friday night, she wet the bed, which was abnormal. Thursday night, I'm sorry, Friday night to wet the bed Saturday night you wet the bed. That Sunday, I mentioned it to my mom and she was like, You should prick her effing finger. And like, you know, then I go home because I didn't have a kid or anything on me because I was an irresponsible person at the time. And you know, I couldn't do it. So I got home, pricked her finger, and I got the lovely Hi. So I call her father, like, Hey, we're gonna pick you up. Now we're going to the hospital. So we went to the hospital, we got the diagnosis, we came home that night with the emergency endo appointment the next day. And I walked in with my Dexcom I was like, here's a sensor, here's a transmitter, you're gonna put this on the baby before I leave here today, because there was no way that it was not going to happen like that. So I kind of forced their hand on it to put the Dexcom on or they fought me for a pump for you know, for as long as they could. You need to see the nutritionist, you need this, you need that you need this, you need that. So I booked the nutritionist appointment, and then I gave them a food walk that day. They want me to do a virtual with the nutritionist within a couple nebula within a couple of weeks. And then I got her on a Omnipod iros the other one not the new one. Yeah,

Scott Benner 27:38
well done. You had a Dexcom. But you also described yourself as not taking great care of yourself. So you had a CGM before you made the change to

Ashley 27:47
once I was pregnant. I met with you know, one of the reps at the time. This was 2015 and they put me on one of the old scary ones that you had to like, hold all weird and have like the holding right and the sticky right? And you had to like break things off. And it was a whole scary mess. But so I started using one of those back then and I stockpiled it because I didn't always wear them all the time. Okay, you know, closer to the time of

Scott Benner 28:14
Yeah, gotcha. I understand what what made you begin to take better care of yourself. Was it that wasn't the pregnancy? Was it

Ashley 28:21
the pregnancy I ended up with? I think I delivered at like a 5.8 and then my a one same thing. Did

Scott Benner 28:28
you go right back to how you were before after the pregnancy was over?

Ashley 28:31
Um I stayed at like a seven. Okay, for the most part. I said I like a seven a for anyone say somewhere around there. Maybe a little higher, maybe a little lower.

Scott Benner 28:41
Where are you now?

Ashley 28:43
I am my West a one C was maybe a month ago and I'll pull it up from my quest app because I don't want to lie on recording.

Scott Benner 28:56
That's what you're worried about.

Ashley 28:58
Well, yeah, actually, you want to know what Yes, I actually stayed up a lot thinking about this because there are, you know, I was nervous about parts of my life that I may not have wanted to come out but because of programs you know, I've done experience strength and hope types of like conversations like I've sat in front of a room before and spoke about, you know, hard drug addiction for 20 minutes and like if I came on to you, and I lied for an hour Who am I helping? I didn't want to do that. So I tossed in charge. And here I am not wanting

Scott Benner 29:35
like this podcast, don't you?

Ashley 29:37
Um, I think it's interesting to be honest, I may not listen to like the interviews but okay, listening to the pro tips. It was kinda like He's not wrong type of thing. Oh, this

Scott Benner 29:49
so I'm interested by this. So you're doing an interview, but you don't particularly enjoy the interviews.

Ashley 29:56
Yeah, I guess I don't know. I just I don't have the time in my life. I can have, you know I want to know how to fix my diesel so I'm gonna listen to that diesel pro tip for God knows how long but I don't have the time I'm doing I work nine to six. I deal with the kid you know she gets home at six I'm doing dinner I'm doing homework. She's in bed by eight, eight o'clock I'm cleaning up from everything and

Scott Benner 30:18
no, I understand I listen. There's a TV show. I've been trying to watch for three years and I don't have time to watch it. It's not that I don't get that. I just think you referenced the couple things that made me think like she's listened to this.

Ashley 30:29
Oh, I have I've definitely listened to some I've listened to you know, some after dark episodes, I listened to the the young Russian girl I thought she was hysterical. I listened to your daughter's episode. I've listened to a few but I don't actively,

Scott Benner 30:43
actively listen to the interviews. But then what made you want to come and do an interview?

Ashley 30:48
I was intrigued by what you had to say. And you know, I I agree with a lot of the things that you say and things like that. And I thought, you know, because of my program. And you could if you could see me I'm sitting here I'm making like a silly face and silly arms and stuff like that. But like, if I could help just one person, you know what I mean? That's really all that I wanted.

Scott Benner 31:08
I'm up for? What's what most of what is the fixed point?

Ashley 31:11
Oh, I'm sorry. My ANC as of October 4 was 6.2.

Scott Benner 31:15
Well, congratulations. That's excellent. You're still you're managing yourself and your daughter in a co parenting situation. You both have very respectable agencies. How about what do you see? And in terms of variability? Where do you like to keep your what range Do you like to keep your blood sugar?

Ashley 31:34
Um, I, my alerts are 70 and 130. But I'm a strange character. I don't. So when we were younger, diabetes wise, they had me on like the old insulin that my mom had to know what my carb count for the day was before, like, giving me any type of insulin. So I was on strict meals at this time, this and this and that, and it was a whole, like feed the insulin type thing. Once I started the pump, the manipulation of the insulin was a game changer for me. So I pretty much go all day I wake up and I drank six or seven cups of coffee and I don't eat dinner until like six o'clock. 630. So my fasting, no variables involved, like my day basil was great. But my carb counts if aren't particularly correct at all times.

Scott Benner 32:30
Okay, do you do not eat a lot? Because you're not hungry? Are you trying to manage your blood sugar that way?

Ashley 32:38
I just don't eat like that. Yeah. Yeah. But you know, I'm more. I'm not a carb count person. I'm not a carb ratio person. I'm more of like, like when you said it, I heard you say it before in an episode like, that looks like it's six units of insulin. And like, I get that, you know, I can't tell you how many carbs are on that plate. But I'm going to need more than five units to start for sure.

Scott Benner 33:05
Yeah, no, I definitely believe in that. Okay, how did you find the show?

Ashley 33:13
The baby was diagnosed. And then I was sent home at midnight, and I was up till four o'clock having no idea what to do.

Scott Benner 33:20
So you're just looking around online? Yeah.

Ashley 33:23
That's interesting. Then I joined the group I saw people had to say and like, I didn't realize diabetes existed, like, online. I? Yeah, at all. Like, in general, I thought it was a myth. I swear, I swear on everything. I thought it was a myth. I didn't know anyone who had it. I didn't know. It was like a possible thing. And I just kind of like, didn't talk about it and dealt with it. So like, all these people online, were talking about Dexcom graphs and doing this and doing that and like, I want it to be better, because that's just I have a sense of entitlement. And I wanted to do better than the graphs that I was seeing. And that's where I

Scott Benner 34:04
am. Okay. I have two questions. First, when you say because you've said a number of times that you have a sense of entitlement. Is that something that you believe about yourself? Or is that something someone told you?

Ashley 34:15
I'm probably both at one point. I just, I was in a relationship at one point, not with my current partner, not with my daughter's father. That was not the healthiest. It was a little narcissistic, to say the least. So like, at one point, I realized what I deserved and what I was worth and things like that. So I don't like settling. Yeah, for other than that at this point. So I think it's a self grown sense of entitlement. I don't like the way that I'm feeling so I want to feel better. So I'm going to do better type of thing. I guess

Scott Benner 34:55
I have to tell you that I don't see that as feeling entitled. Like I don't think wanting to do better for yourself. Unless you're using that word in a way that I'm misunderstanding like, I don't see,

Ashley 35:05
maybe I'm not using it right. Well, that would be maybe, I don't know, let's find

Scott Benner 35:08
out. I, I think when you say that when anybody says that, I think of the idea that you feel like you deserve something without having to put in any effort. Yeah. Okay. But do you feel like do Is that how you feel? Like, is this something you deserve? You should just have it.

Ashley 35:28
Mmm hmm. After 20 years, maybe, you know, I feel like I should have better control. Oh, okay. Things like that. I don't know, maybe. I don't know,

Scott Benner 35:39
though. So maybe it's like, well, I've been in this game for a long time like this can't like this can't possibly keep happening to me. Like, right. That's not fair. Like I've done this for a while. Yeah, I should know how to do this by now. Okay. All right. I just want to understand what you're saying. I wanted to make sure I understood what you're saying. But now,

Ashley 35:55
maybe I wasn't saying it. Right. I don't know.

Scott Benner 35:57
It's, it's okay. I I really just want to, I want to make sure that you're clear that my second question was, you wanted to do this, so you could try to help somebody else. So what is it from having diabetes for as long as you've had for living through an addiction for having a baby who now has type one diabetes? What is it you think people should know?

Today, I will be taking these few moments in the middle of the podcast to tell you about the Omni pod tubeless insulin pump. Are you on MDI right now giving yourself injections? Would you like to get rid of those multiple daily injections? You can you can get your insulin delivered through this wearable little pod called Omni pod. Maybe you're using a different pump, and it's got a whole bunch of tubing on it. And that tubing is sneaking through your bra and up your shirt and down through your jeans and you think I don't like this all this tubing. Well, I'm the pod doesn't have tubing. So that might be a nice thing for you to do. You know, make the little switch. You can you know, you may actually be eligible for a free 30 day trial of the army pod dash. I did not time that statement to coincide with a magical music. It just happened because the Omni pod is magic. All right, listen. My daughter has been using an omni pod. Since she was four years old, she is going to be 18. This summer, she has been wearing one every day for all that time, it has been a fantastic partner with her and her insulin on the pod lets you bathe and swim without taking off your pump. That's a big deal. It allows you to involve yourself in sports or other frolicking activities without having to take off your pump. When you take off your pump. You're not getting insulin anymore. And that's not okay. So all those two pumps that have to come off when you're playing soccer, or going for a run or whatever it is, I don't know, wherever you're like you're roughhousing. You know what I mean? I'm saying sacks, like stuff like that, right? You can leave your pump on for that. When you have the Omni pod, and you get a nice even delivery of insulin just the way you're supposed to. There's no tubes to get caught on doors. Sure, that's a pretty cool thing. But mainly the Omni pod is small, it's very wearable, it goes right on to you. Right, and then there's no tubes that come off of it. There's also no controller that's connected to the pod. So when you make decisions in the personal diabetes matter and little PDM that thing is wireless. Understand, nothing's connected to you, nothing has to hang on your belt, nothing has to come off for you to get in the shower. It's pretty damn cool. I'm the pod.com forward slash juice box head there now see if you're eligible for a free 30 day trial of the Omni pod Dash. And if you're waiting for the Omni pod five, there's no need. Because with the on the pod promise, you can start with the dash today and switch to Omni pod five. When it's covered by your insurance, no muss, no fuss. One link covers them all. You can get started today, you can find out more, you can learn about the Omni pod promise you can find out if you're eligible for a free 30 day supply of the dash. Or you can get full safety risk information and free trial Terms and Conditions. All these things, right. All this stuff that you might need. It exists in one place on the pod.com Ford slash juicebox. For full safety risk information and Omni pod promised Terms and Conditions. Just visit that link. There are also links in the show notes of the podcast player that you're listening in right now. And links at juicebox podcast.com on the pod I don't know what else I could tell you it's Awesome. You know what, I'm gonna bleep that out. I'm not supposed to curse the ads, but it really is awesome

Ashley 40:22
I would just say keep it simple. That's really all that it comes down to, like I see. I see a lot of things about my diabetic kid, I'll left the house again without their bag. What am I supposed to do? Like, depending on their age, you know, teenagers wise, keep everything in their car, keep maybe not a vial insulin, but pump supplies, Dexcom supplies, finger test supplies, like 1617 years old, they're gonna want their car no matter what they're doing. And if it's in their car, they're always going to have it. Like I don't go anywhere without my car. I don't carry a big giant bag with supplies for me and the kid and the whole to do like that'd be a really big bag. I keep like a makeup case in my car with supplies. I carry a finger sticker and like loose land sets and strips and a little thing in my bag and call today does take up a square me and call it a day.

Scott Benner 41:19
Does it wait pick up what?

Ashley 41:21
The swimming? I don't think I say it right? The nasal injector. I don't say it right.

Scott Benner 41:26
That's excellent. Your glucagon is the nasal injected glucagon. You keep saying yeah, you keep saying misquote me. I like that better. Don't worry. So are you saying that big picture, when you see parents of children with type one kind of, you know, like doing too much being upset and worrying about everything that you're saying, Look, yeah, some of these things that you're worrying about. You don't need to be as worried about so I feel

Ashley 41:50
Yeah, don't don't worry about it. I mean, worry about it. But don't take it to the extreme. Like, I keep supplies for, for me at this point in my life. Not in the past. At this point in my life. I keep supplies for me and the kid in the car. at my mom's house. When I was in the office, I kept supplies on my desk. And like, I never had to carry about it like, what am I? What else am I doing? I'm at work. I'm at my mom's or I'm at my own house. I don't need a giant thing as supplies. If I'm going to the grocery store, I don't need the whole 50 pound bag. If I'm going shopping for a couple hours, I don't need the whole 50 pound bag, you know, so I think vacation is a different story. But simple day to day activities is just right. Simple.

Scott Benner 42:36
The way I see it is that people are online, normally, in a moment when they're unsure. Like even looking at you like you found the podcast in a moment where you were unsure, right so that people get online. They're new, they're trying to make sure everything's okay. They're you know, parents are trying to keep their kids safe. And there's overkill and but after time, I think you figure out what's overkill. And what's necessary for a good example would be that Arden went back to high school this year after COVID for her senior year. And it was like four days into like four days into the into the new school year. And I said to her Do you think we should like take the nurse some supplies or something? And she's like, I don't know if you want to sit Okay. Well, we'll just give her like an extra pot and some other stuff. And you know, give her your glucagon. And like can

Ashley 43:26
your school change it for her or she's pretty much self administering at this point. So they can't doesn't even matter.

Scott Benner 43:32
Yeah, they wouldn't touch her. I don't think anyone there's I mean, I don't think No one's ever touched her insulin pump or anything like that. I just mean like the, the idea of like, you know, you see people who spread juices boxes into every room their kid goes into which by the way at some point when my daughter was like six or seven there was a little supply in every place that she'd be. But as she got older, that became less than less than necessary. Arden has a small makeup bag with a juice box in it. It has a Contour Next One blood glucose meter and it has a lance some test strips to go with a meter G vote hypo pen. I don't think there's anything else in there. And to be honest, she only she's only started carrying glucagon since it has become easier to carry like since since she voc has happened because prior to that, like I did not have her carry around like that big like that red box with all you know like

Ashley 44:28
Yeah, and I don't remember carrying that thing around either as a child

Scott Benner 44:31
Yeah, I just that's a it's a strange I mean I get it like if she used to have them like the nurse had one but I never Yeah,

Ashley 44:39
they're always in the school, the school box supply and you know, in the home but yeah, regular day to day carrying it wasn't something that I thought to bring. Right. So

Scott Benner 44:48
I think that people I mean, maybe not everyone, but I think everyone starts out super enthusiastic. You know, and you've you've seen the pictures online like big, like plastic boxes and there's you know Yo label makers on the front to explain Oh no. And

Ashley 45:03
I felt weird this year sending in my box, comparing my school boxes for the kid to everyone else's school boxes. I'm like, am I not doing this right? And like, I felt weird about how little I sent but like, she doesn't need anything. And I need to go crazy.

Scott Benner 45:18
So you don't have that feeling because you've lived through diabetes. And you don't you don't think like, oh, I have to have everything that we've ever owned that has anything to do with type one with us at all times.

Ashley 45:30
Yeah, pretty much I just, it's, it's a regular it. I set it to someone recently, and another group that I'm in something like, walk hand in hand and you're with your diabetes, so you're not, you know, one or the others not dragging the other around. Like, if you know, you're not going to avoid certain foods, like just figure out how to Bolus for it. If you know, like, you don't need all this extra nonsense all the time. Like there's a time and place for everything. But keep it easy on your regular day to day, you don't need an extra 50 pound bag, you could just breathe, it's okay, you're going to the grocery store who's going to rip the pot out, you know, you're sitting calmly the baby sitting calmly and the thing is, I don't think they're gonna I mean, maybe a baby might but you know, my six year old sitting in the car, and she's not going to rip a pot off. I don't need to bring 50 pots with me in case of

Scott Benner 46:21
Yeah, I have like a distance in my mind as a driving distance. Usually, if I'm going to be, you know, 30 minutes from the house, but we're just going to the mall and the Ardennes pods in like 18 hours old. I think this will be okay. If our pods you know, almost, it's 70 hours old. And we're going to the same place. I might think I'll bring in a pump just in case only because I don't want to be there in the middle of something and then have to

Ashley 46:48
exactly yeah. But that's why I keep it on the car already. If I'm if we're doing a family thing. I'm the one that's driving I have the Jeep you know, so I keep everything in the car already. If something happens, it's already in the car. Replace it next time I go home. Yep. Yeah, that's not like a constant thought of it was just like that was one of the easy things that I could do because I am a headless chicken half the time I'm running. Where's my phone? Where's my glasses? Where's this? Where's that? matching that with diabetes supplies? Where's my pod? Where's this? Where's that? Where's my PDM? You know what I mean?

Scott Benner 47:20
Yeah, absolutely disaster. If you listen to more of the interview episodes, you'd know not to say stuff like that, because your episode can easily get called headless chicken now, and

Ashley 47:28
oh, I would love that would be great. Actually headless chicken. I thought I thought you were gonna use the two babies and a baby I'm sorry, the lesbians and baby daddy co parenting dual diabetes, but you're gonna have something around those lines. I'll take her was checking the last

Scott Benner 47:43
42 minutes I've just been me basically trying not to ask you how often your ex tries to have sex with you and your partner. So like, or how many times he like playfully brings, there's

Ashley 47:53
always one conversation on how we do like, we do like a quick easy bar crawl kinda I don't know, we take the kids trick or treating. We go with a whole group of kids, you know, the adults have their drinks and the kids do the running and the candy thing. Then we end up down at one of the bar at one of the bars where the kids could sit down and eat we sit down and eat and that's a good time. So once those drinks start happening is Windows.

Scott Benner 48:20
When the joke I mean, it's all joking. It's all joking, of course like, oh, we have a cute kid, right? Like, oh, yeah, yeah, actually, he's joking. Unless you say okay, and then he's not joking anymore. Like, one time?

Ashley 48:33
Oh, there's so many things I want to say when they listened to and they're great people. They're great people. So I don't want to say anything like that. They're great. It wasn't anything like that. Whatever.

Scott Benner 48:44
I got that off my by the back of my brain to think about that. He only

Ashley 48:47
asked once, once every year when they're drunk. Maybe joke, maybe not.

Scott Benner 48:54
We'll find out. How do you handle? Are you do you drink? Still? Or do you not?

Ashley 49:00
Have I actually I do I do drink. I do live in a legal state recreational wise as well. But I wouldn't say that's a everyday type thing. I definitely do not for those listening who have heard me talk about recovery and programs and things like that. I don't count time. I don't do any of those types of things. But I live in a legal state. And alcohol is legal to so

Scott Benner 49:22
okay. So for you. The hardest, like avoiding the harder stuff

Ashley 49:28
is yeah, I won't even take Tylenol. If I had a headache. I don't take you know Mitel if I have my period, I don't like I stay away from that type of stuff. Interesting.

Scott Benner 49:37
Okay. That's really it's a it's a not a world I completely understand. But I have conversations where I'm starting to figure it out. But it's so it's nice. Yeah,

Ashley 49:48
I mean, I know my limits. I know when certain things shouldn't be a discussion. Like if we start talking about one thing too long, you know, let's not do that have this conversation anymore. It's the ideation Have the other things that will get you nervous.

Scott Benner 50:02
So you could have like thoughts that you'd be afraid would lead you to an action.

Ashley 50:07
Yeah, exactly. Gotcha. And that's something I've learned from the program, things like that.

Scott Benner 50:11
Gotcha. So you stay away from that kind of thing? How much yeah, do you do you mentor anybody? Or does someone mentor you? Or do you not do that? Oh,

Ashley 50:19
no, no, I'm an isolated isolated with all work from home thing I just, I you know, I upload my Google every night and go through all my data and then I do the kids and then I send out the group text message to the you know, other half of the kids family and say, Hey, look at this from today, should we change this? So I've replaced it with diabetes is really what I've done. Yeah. Okay, so you're on my list making and my diabetes

Scott Benner 50:42
you're putting your effort into this which is obviously working out really well because your agencies again are terrific in your ranges or do you keep the I liked that you call her the kid do you keep the kid is arranged like yours yours hers different.

Ashley 50:58
Um, my follow alerts go off at 160 But her phone alerts because you know, I have run a regular phone on so I can read it in school. I have them set the highest so they don't really go off and bother in school. Okay, so you she has a little bit more leeway than

Scott Benner 51:14
me. So you know prior to when somebody who's with her nose and like so yours will be but

Ashley 51:20
oh, they will everyone has the follow up on their. on their phone. Everyone either, you know, has the sugar made on their watch or whatever the case may be. We're all crazy. I'm actually looking at Oh, I don't know if I could say it because it's the thing. Am I like to say things like products? I don't care. I have one of those. My partner's just bought me one of those or two rather, because it was a two pack. They were kind of expensive. That's why one of those glucose bowls like the glowy thing that connects to the sugar mate and like I could see my sugars and stuff like that like in color.

Scott Benner 51:53
I've seen people talking about them online. I've never seen them. Yeah, I've seen it on your

Ashley 51:57
on on the Facebook, Facebook, that glucose thing. So I'm looking at that right now for everyone's colors. Just

Scott Benner 52:04
wow, I hate glucose. Have you experienced a uptick in sales and to figure out that it came from here I'd be open to selling you ads

Ashley 52:15
it's a great product guys like

Scott Benner 52:17
a little like that. I don't work for them like a ball right? That it changes colors or? Yeah, exactly.

Ashley 52:24
Does it make like a little LED ball when she's well it's red. And then the higher her number goes, it goes to like violet. When she's in range, it's green. Like right now I'm at you made me nervous in the beginning. So I you know temper my basil earlier today. And I ended up dipping a little bit I ate a cup of Skittles and now jumped up to 147. So my bowl was blue, but I could see that I'm okay and steady.

Scott Benner 52:51
You were nervous to come on the podcast.

Ashley 52:54
I was I normally most days I have to tempt my Basal up because of work for the most part anyway. Yeah, so I increase it a little bit more I got stuck at like 130. And then you know, I bumped it up just a little bit too much and came down to like 120. I thought a scale would fix it, but it didn't fix it. And now I'm 147

Scott Benner 53:15
Wow, you're really on top. It's interesting to talk to somebody who went from, like not paying attention to it to paying attention to it. So did you always know how to handle it? Or did like the advent of the CGM help you understand it better? Like, what's it the pro tip episodes like? Why do you Why are you so?

Ashley 53:36
I don't know. To be completely honest. I just I don't know.

Scott Benner 53:42
I figured it out where you cared?

Ashley 53:43
Yeah, it just happened. I guess it just it just kind of happened. It might have more to do with, you know, with the kid since we're going to call her that, because they're following her numbers too. So like, if I have her and like her numbers a little bit at a range. I'm like, Oh my God, they're gonna text me and they're gonna yell at me because their sugars are so high and I don't know what I'm going to do. So it was just more of like a felt like being watched type thing. So I just wanted to do better or show off maybe I don't know,

Scott Benner 54:09
somewhere between accountability and peacocking

Ashley 54:14
I guess Yeah. Okay. Exactly. Accountability. Like what I'm sorry,

Scott Benner 54:21
I'm saying accountability seems important to you. I think that's how a lot of your like, I think that's a lot of the ways that you've helped yourself is to be accountable. Yeah, you know, to her during your pregnancy or to yourself or her for her diabetes or to other people in your life. Because you've taken responsibility for a baby and other people care about that. So you want to be accountable like and that accountability seems to work for you.

Ashley 54:47
Yeah, I guess that's like, yeah, yeah. Exactly.

Scott Benner 54:52
Doesn't make you feel badly right. Like you don't feel pressure. No,

Ashley 54:54
I like knowing that my word you know what I say mean? is what I say and like I can you know, answer that if you have a question, I'm not nervous to answer it. Authenticity, I guess I'm real you have not felt I want people to believe that, you know, like, I didn't want to come on to you and why that, you know, I wasn't a drug addict and I've been doing this great all these years now like I was a drug addict I had horrible blood sugar's I ended up cleaning myself up took a little bit better care. And then now it's exactly a peacock thing.

Scott Benner 55:29
Were you. Were you lying to people during a big part of your life?

Ashley 55:35
About everything? Okay. About everything? Yeah. How did you see the stars last night? No, it was cloudy. Why would you say that? I

Scott Benner 55:43
don't know. No idea. Just nothing was real.

Ashley 55:47
Yeah, nothing was real, I guess because the the the life quote unquote, that I was living didn't, I didn't want it to be real. So I said whatever I wanted to say just Howard Stern quote, unquote, I wanted to say things to get a reaction out of people, I see

Scott Benner 56:04
what I'm, when you're living like that. You're aware that you don't want to be or no.

Ashley 56:13
Um, I guess at one point, I had to be aware to make the decision to, you know, to make an actual decision to do something different. They say insanity is doing the same thing over and over and over again, and expecting different results. If you do the same thing over and over again, you're always gonna get the same result. So if you do something different, that result is going to change, and that I use and diabetes all the time.

Scott Benner 56:38
Is there is there I want to, I'm gonna re ask my question, because I'm not sure I was clear. Oh, did

Ashley 56:44
I not answer? No, no, it's

Scott Benner 56:45
not that you didn't answer. I definitely wasn't clear. I'm gonna say that. Like, is there a moment in your life where you're using? And you're consciously thinking, I don't want to do this, but then you do it anyway. Where do you not consciously know that you want to not want to be or shouldn't be doing what you're doing? Like what's Is there any conflict while you're doing or does it just feel like the right thing?

Ashley 57:13
It was always a conflict. Okay, I, you know, I didn't want to steal my mom's jewelry. And I didn't want to point it at the pawn store. And I didn't want to use it for X, Y, and Z. But I still did it. And I still got caught. You know what I mean?

Scott Benner 57:27
You're standing in that pawn shop. Are you thinking, I cannot believe I'm selling this, but I need to because I need the money for drugs. For the most part, yeah. That's how it feels when I was alright. So it's not like an abandonment of your morality. It's just that it's been, it's being held down by the addiction. Like the morality is not as important as the addiction. Is that how that works?

Ashley 57:53
I don't know. I'm not really sure how it works. It's just I don't even know what the word to put to it is it just didn't matter. Like you know, as long as I could do this, I'd be able to get through this if I could get this I can get through this day. If I had x y&z I can go through my normal workday, right?

Scott Benner 58:14
I see. Okay, so just Yeah, yeah, it was

Ashley 58:17
just forced, I willingly handed everything over to it, because I had no other option. Or at least I thought, once I realized I had the option to stop is when the whole thing changed. Yeah. And I think that comes into play with everything with with diabetes with, with everything, once you make that decision that you're going to handle it better, or do something different, like you willingly make that choice every moment. And that's that so to

Scott Benner 58:44
you, if I'm going to extrapolate here a little bit, but to you, if you can be addicted like that, and recognize that that doesn't have to be your world and get out of it, then you're saying that we're then the assumption here is that around diabetes management, if you're feeling overwhelmed by it, like, oh, I can't do this, or this is more than I can do. The truth is, you probably can do it. Exactly. Yeah, exactly. Okay. You just sort of have to decide to let go, Yeah,

Ashley 59:15
every everything is, and that's what I took away from, from all of those years of of using was that once I made a decision, like, I can stick to that, like my word meant something which is why I didn't want to come on and lie about that type of stuff, because I wanted my word to mean something. So like I now I've made a decision to upload my gluco every day because my phone buzzes at a certain time so I can make sure I go through my data. And if I willingly make that decision, I can consciously take care of my blood sugars to ensure I feel better the next day.

Scott Benner 59:47
That's excellent. I also want to try to give you a little bit of comfort like Ashley if you came on this podcast and decided not to talk about your addiction. You could be honest about your life without lying to me like omitting some thing wouldn't be lying. Now, if you change the story. Yes,

Ashley 1:00:05
yes and no, you know, to you it would feel like lying. Yeah, yeah,

Scott Benner 1:00:10
I appreciate that a lot.

Ashley 1:00:12
I wanted everyone to know that, like, you know, no matter where they are at their diabetes management or where they are in their personal life choices, like, there's always an opportunity to do better, there's always a way to get yourself out of a situation if you're struggling with whatever type of food and like, you really don't want to let go of those lucky charms. Like, I did that with the kids, you wanted the stupid monkey charm. So I spent like two weeks with playing with Pre-Bolus thing and timing and manipulation of insulin and pulling it here and cutting it back from there. And like, I realized that just yesterday, she can, you know, take X, Y and Z of whatever her ratios are, and I don't want to give dosing instructions. Then I added seven minutes of jump roping to the stupid thing and a sugar state fine. She taught that at 130. With Lucky Charms came back down, I caught her with like, three apple slices and she stayed like 90. And like that took me so long to do. But I made the choice to continue trying to get it right. And that's that's why addiction is so part of my diabetes. Now,

Scott Benner 1:01:24
after it happened. Did you run around the house singing the lucky charm song? Like did you ever find yourself thinking this is magically delicious? I've done it like I usually have like you were really proud I would have been

Ashley 1:01:34
honestly, I think I was pissed because my blood sugar was high.

Scott Benner 1:01:39
So I did have a very similar thing with, you know, with cereal at one point, I just kept pushing and kept pushing until I figured out what did it and like you said it was I felt it's crazy, because Arden doesn't really eat cereal any longer. But when it happened in that moment, we did all the things that you kind of outlined, like we tried, didn't do a good job of it didn't have the right tools didn't have the right understanding. So she stopped eating it. And then one day, I thought I do have the tools and understanding how I bet you I could Bolus for this. And then I figured out how to do it. And then one day, she just sort of grew out of eating cereal anyway, it was like I don't want this anymore. All right, well, at least I know I can do it, then you apply what you've learned to a different situation or a different meal. Yeah. And then you just kind of grow with it. It's kind of exactly, it just takes time. Everything takes time. Like no matter where you start, you know, if you start on level ground or in a hole, if you just keep at it. Eventually, you get to the other side, I had this sort of weird. I was interviewing someone recently who had been married a number of times, and was a much older person, meaning like a person in their 70s. And it was super interesting to hear her talk about times in her life, that just were memories at this point. Like she had lived an entire life with a man, right, like they had been married and had children and owned a home and put their children through school and and he passed. And then there was time. And then she met another person and then lived another 35 years. And to hear her like, I'm not saying this right. But there was something I

Ashley 1:03:22
know what you're trying to say the different lifetimes and lifestyles, I know where you're going

Scott Benner 1:03:27
lifetimes inside of a lifetime. And how how she could remember back to that first one with just kind of joy. She only remembered the good stuff. And that none of the painful things that people think about day to day existed in her memory at all. And I was incredibly like, buoyed by that. I thought wow, like that's amazing. So so things, little things that you worry about day to day, are genuinely meaningless. And if you if you could find a way to understand that in the moment, everything would be so much better. And I wonder how then would you look back, like I realized not everybody is going to have a couple of like, families in a lifetime. Not everybody is going to live into their late 80s kind of thing. But there's there's a lesson from that. You know, that. And I think you've kind of figured it out too. Like you've lived through a really bad thing. That's now not part of your life anymore.

Ashley 1:04:26
Yeah, and I do I do feel like that I feel like three different people living inside one body.

Scott Benner 1:04:33
And the further you get away from that time in your life, the more it'll just seem like an education that you received, and less I imagined it'll feel like disappointment or pain. But you have to

Ashley 1:04:49
stay. Yeah, I guess so. Kinda like talking about things that happened like and for you maybe like things that happened at the beginning of yours and your wife's marriage, you know, talking about like, that one really big fight that you guys had, like, now you're not screaming at each other, you can laugh about it now.

Scott Benner 1:05:04
It's just there's a big, there's a big existential thought in there that you I'm gonna leave everyone listening on their own to at the end of this episode just to think about on your own. But if you stay alive long enough and you persevere and you don't give up everything you're worried about in the past, kind of doesn't matter. And yeah, that's cool. All right. Ashley, is there also Ashley in the kid is in my mind for a title as well. So we'll go back and forth figure it out. Is there actually in the kid works? I don't know. You sounded like you liked headless chicken.

Ashley 1:05:37
But oh, the headless chicken and the kid that could work? I'll tell

Scott Benner 1:05:41
you right now. Headless Chicken and the kid. Done deal. That's it right there. I'm gonna make a note. So I don't forget. Is there anything that we haven't talked about that you hope to bring up today?

Ashley 1:05:54
Um, I would just say keep it simple. For everyone who's listening lower. Don't let your high alarms go off at 180 If you're not comfortable with your blood sugar at 180, set the alarms to go off earlier. Like, keep little easy go bags in your main designated places. Like just take things easy. You're gonna be dealing with this forever. Like, yeah, you always trip over the you know, you never trip over the big rock. It's always the little rocks that you trip over all the time. So just stay easy. And know what you need. That's all. Well, how you feel.

Scott Benner 1:06:27
Ashley, thank you very much. I really enjoyed this conversation. Oh, I hope so. Do you feel like you did what you wanted to do?

Ashley 1:06:36
Oh, I maybe I don't know. I just like talking. And I thought it would be fun to talk with you. I fangirled really hard when when I saw that post that you put up and I was like, I'm gonna blow this guy's mind. And I'm gonna send them a wild email. And it worked, obviously, because here I am.

Scott Benner 1:06:51
Do you think this is an after dark episode? Probably. It might be I think you might be right. I'm fascinated, like, really, that you wanted to do this so much. But that you didn't feel but you don't feel particularly Do you think there'll be Let me ask a different question. Do you think there'll be a time where you'll get more out of listening to other people's stories?

Ashley 1:07:16
I think I'm just half lazy half doing too much all the time. I've definitely listened to you know, the more commonly spoken about ones. But I just I don't know, when I got too much, I think to sit down and listen to someone

Scott Benner 1:07:32
that we're gonna have to get you a job where you're not wearing a headset so you can do other stuff.

Ashley 1:07:36
Yeah, exactly. I sit here with the headset, I get calls. If you know when the person hangs up, I get another call three seconds. And it's not like I could sit there and yeah, Facebook and listen to things. It's it is what it is. It pays my bills. My insurance is great. So excellent. I'll take it

Scott Benner 1:07:54
is there. I don't I don't think of this as weird. But I would like you to speak a sentence that includes the words pissed off coffee and call. Let's think about how we could do that real quickly.

Ashley 1:08:05
I got Oh, I got it right now. You ready? I don't even need the prompting. So I was drinking my coffee. And I received this call from whoever it was right. I was talking to dolly Johansson. And they were telling me how their husband was yelling at them. And you know, it pissed her off so much. I spilt my coffee. Perfect.

Scott Benner 1:08:25
Thank you. And by the way, we might now have to change the episode title to Molly Johansson. That was fantastic. I don't know where you came up with that. But that was wonderful. I love your accent.

Ashley 1:08:37
Have you seen? Have you seen the imposters on Netflix? No, I think what? Oh my god. Well, that's where it came from one of the main girls are her hidden name is Johnson without an H they see it all the time. And then one of her name she pretends to be as Molly so it just clicked. But watch the imposters? What do you mean don't watch them the pastor. That's why I can't listen to the episodes because I'm watching Netflix.

Scott Benner 1:08:59
I'm almost done squid games. My son is badgering me to watch what if? And I have I have that's pretty much it. So

Ashley 1:09:11
imposters is good. It's the did you watch Lucifer by any chance my

Scott Benner 1:09:15
wife watches Lucifer. I don't watch it.

Ashley 1:09:18
That the girl or the actress rather? Who plays Eve and Lucifer is the main character of imposters. So it's a good show. All right. All right. I'm on nice to look at.

Scott Benner 1:09:28
Oh, I see what you're saying. I gotcha. Well, then maybe I'll take it. Maybe I'll check it out. Well, we'll find out if you're if what you're attracted to is what I'm attracted to. I'll Google in a second try to figure it out.

Ashley 1:09:42
She doesn't look like my my wife or almost wife. We're getting married in April, but she doesn't look like her at all. Two different people. graduations. I

Scott Benner 1:09:49
didn't realize you were getting married.

Ashley 1:09:50
Oh, yeah. It's a whole to deal with me. Yeah, diabetes is the least of my worries for the most part.

Scott Benner 1:09:56
I said, I mean, we're done now, but let's just do this while we're together. So The Lucifer app. Sorry, this is the MP, you can go if you want people, but I'm going to figure out who this actress actress is for a second. Lucifer

Ashley 1:10:11
the dark haired girl all right. And bar lavvy.

Scott Benner 1:10:19
I got her. It's funny. I just looked like a bunch of women popped up in front of me on Google and I went to the one with the dark hair right away to say, you and I might be on the same page. Ashley? Alright, so this, she's about your speed.

Ashley 1:10:35
I mean, she's nice to look at, but my wife is blonde.

Scott Benner 1:10:39
It's interesting. All right. So you don't care. Blonde, brunette, tall, short doesn't matter to you.

Ashley 1:10:47
Um, I don't even know if it's a gender thing. If we even want to have that part of conversation. I like how you make me feel like obviously, I had some type of feelings for my daughter's father, right? Like you have a baby together. You know?

Scott Benner 1:10:58
So it's like,

Ashley 1:11:00
yeah, yeah. How they make me feel who they are as a person. Like, I've been me and my partner have been doing this dancin for 12 years, you know, three years on, then we broke up and then you know, we're back on like four years at this point with a engagement and a wedding. And

Scott Benner 1:11:19
by the way, I'm fascinated by how short actors and actresses are. Like as soon as this big picture in bar popped up, I'm like, That is a tiny little person. And then that made me Google. In bar lobby height. She's five, three, you know, she's probably lying about that.

Ashley 1:11:34
So oh, probably. My license is 5325353 house dollar. Now I'm a little bit shorter. Maybe I'm like five, maybe 5152 unreality.

Scott Benner 1:11:45
I say five three, Scott, but I'm 411. All right. Alright, we're definitely done. Now. I really appreciate this. Hold on one sec.

Ashley 1:11:53
Oh, I appreciate you. I loved it. Thank you.

Scott Benner 1:12:03
First off, a huge thank you to Ashley for coming on the show and sharing her story so openly with all of us. And of course, I'd also like to thank Omni pod makers of the Omni pod dash and they on the pod promise. Head over now to Omni pod.com forward slash juice box to get started today, you may be eligible for a free 30 day trial of the Omni pod Dash. And don't forget to find 10 minutes today to go to T one D exchange.org. Forward slash juice box. Join the registry, fill out the survey help people with type one diabetes. I'm going to say a few things after the music but if you don't want to hear them, just hear this and go. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Okay, quick stuff, little what they call housekeeping for the podcast. Check out the private Facebook group Juicebox Podcast type one diabetes links in the show notes links at juicebox podcast.com. A private group where people are talking about using insulin. How many members are there 22,000 and counting. Earlier I made up said 23,000. But I got ahead of myself. We're almost at 23,000 I mean, listen to a lot of people. They're all really cool. You should check it out. Juicebox Podcast type one diabetes on Facebook. Are you looking for the diabetes Pro Tip series. It begins at episode 210. In your podcast player, it's also available at diabetes pro tip.com and juicebox podcast.com. If you're newly diagnosed and don't understand a lot of the words you're hearing around diabetes. The defining diabetes series begins at episode 236. There are currently 36 episodes that are defined. You can also find those at Juicebox Podcast Icom and at diabetes pro tip.com. We have just finished the defining thyroid series which began at episode 616. That's a 10 episode series about fibroid disease. Don't miss it. Trust me. Trust, there's a lot to know. But it's easier to understand than you think. And when you have good information, your thyroid care will be a lot better and so will your life. What else do I want to tell you about before I go? I am a fan of the variable series that begins at episode 491. That's 22 episodes, where Jenny Smith and I talk about variables that impact your life with type one. Some of them are expected and some of them not so much. How about like pumped site placement, alcohol hydration travel, jumping on a trampoline, and so much more. diabetes variable series begins at episode 491 Do you ever eat french fries and and an hour and a half later your blood sugar goes up and you don't know why does that happen to you? You might want to check out episode 360 Defining diabetes, fat and protein rise and Episode 263, diabetes, pro tip fat and protein. You also might want to look at episode 264 bolusing for keto, or episode 471 bolusing insulin for fat. How about that? Did you know you might need insulin for fat and protein? You do now, head over and check it out. There are so much to choose from at the Juicebox Podcast some things for everyone you might say. Like Lastly, if you're loving the show, and you think you might know somebody else who would love it to please take the time to share the show. It is how it grows. It is the only way that it grows, word of mouth. So get out there and tell a friend. Like I said before, I really appreciate you listening, and I'll be back very soon with another episode of The Juicebox Podcast.

#650 Omnipod 5 Talk

Skiy is the mom of a young type 1 who has been using Omnipod 5 for 19 months.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 650 of the Juicebox Podcast. After this episode was recorded and posted, we learned some new things about Omni pod five. I'm adding that at the very end of the episode. Make sure you find it. today's podcast is me speaking with Skye, Skye is a mom, the mom of Vera Vera is a child who has type one diabetes. About 19 months ago, Vera became part of the clinical trial for Omni pod five. Oh, no, you're interested, huh? Skye is here today to tell us all about it plus other things while you're listening to her, and I, so that's me and Skye. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please Always consult a physician before making any changes to your health care plan are becoming bold with insulin. Were my people who love to fill out surveys. If you're from the United States, and have type one diabetes or from the United States, and are the caregiver of someone with type one, you can go right now to T one D exchange.org. Ford slash juice box and fill out the survey. When you do that. You'll be supporting people with type one diabetes and the Juicebox Podcast. It will take you fewer than 10 minutes. Come on, you can do it. I know you'd rather I keep talking to the music lately. I know you'd rather get online and take another kind of like, you know there's online quizzes that let you know where your chakra is and everything but could you do this for me first please. T one D exchange.org. Forward slash juicebox. Today's episode of the podcast is sponsored by touched by type one. If you're a golfer, listen to this next little bit, especially if you live in the Orlando area. Touch by type one has a big event coming up big big big golfing for diabetes Saturday, April 2 at the Rosen Shingle Creek Golf Course. Orlando, Florida. Registration is available now at touched by type one.org. The event again is on Saturday, April 2 in Orlando, Florida. If you're a golfer, I believe they call those duffers and you want to hit the links. I believe that's what a golf course is called. You should head over there right now and get all signed up. It's going to be a really terrific event touched by type one.org. Now I have to go look up Dhafer and links to make sure I use them correctly. I don't mean to bore you before this, but apparently duffers, not what I meant. That's sort of a colloquialism for a poor or mediocre player. I didn't mean that. I mean, if you're like amazing, like a little tiger woods, you know what I mean? Just like so good at it. I just mean the golf part. You're like Tiger Woods, not the part where he crashed his car all loaded up on the drugs and everything and appears to cheat on his wife and stuff like that, that part. I'm not talking about you. This is going off the rails. But if you're in the Orlando area, and you want to support a great type one charity, and you'd like to play golf, touched by type one.org This episode of the podcast is actually also sponsored by contour the Contour Next One blood glucose meter that is you can learn more about it at contour next.com forward slash juicebox it's an excellent meter. I'll tell you about it later. I'm sorry that the beginning of this episode got so messed up, but you know, just live with it. Okay, here we go. I just want to check first you don't work for Omnipod, right? No, I don't know. How did you get the LMR?

Skiy 3:27
Well, do you want me to say who I am first?

Scott Benner 3:29
Oh, lucky. Sky? Or

Skiy 3:33
should I just be a mystery the whole time?

Scott Benner 3:35
We'll get to it don't worry. Or anxiety usually sky.

Skiy 3:44
I just want to make sure that you know he's forgot about

Scott Benner 3:47
your like he's doing it wrong. He's doing it wrong already. I knew this is gonna happen. No. Go ahead. Go ahead. Introduce yourself.

Skiy 3:54
Okay, well, my name is Skye, and I'm the mother of a six year old type one diabetic named Vera. Okay. But I can move on to the limited market release now. Now that I've said Why am

Scott Benner 4:06
I leaving all of this in for people? I want them to understand in the confused way we tripped at this. So so my question was was going to be how did you get the Omnipod five during the limited market release?

Skiy 4:22
Okay, so we were in the clinical trial. Leading up to that we were in there in the clinical trials for a year and a half. And so we were invited to partake in the limited market release.

Scott Benner 4:34
Perfect so you don't work for anybody. Dexcom on the pod, nothing like that. No, nope. You are not encumbered at all. Then you can say whatever you want.

Skiy 4:44
I am just a person who manages I'm a I'm a pancreas by day that's what I

Scott Benner 4:51
this is good then Alright, hold on a night. I guess I'm a pancreas all the time. I'm just gonna give you off in the

Skiy 4:58
evenings in the weekends off. It's great. You

Scott Benner 5:00
got a better you got a better golfer than I did. Alright, well, let's just find out a little bit about everything first. So Vera six now How old was she when she was diagnosed?

Skiy 5:09
She was two and a half, just like Arden. Oh,

Scott Benner 5:12
wow. Okay. You started off how what was your management like from two and a half until now.

Skiy 5:19
So she, so she was diagnosed. I actually on my husband's birthday, at two and a half, which was a, you know, fabulous birthday celebration in the hospital. She was diagnosed August end of August, we were on Dexcom within By October, and then we I pushed to get her on Omnipod by March. So we did MDI for six months. And then we were on the Omnipod. Your Eros? I believe that's how you say it correct. We were on that until, until we got onto the clinical triangle. We were never on dash. We were never on any other system. Well, you

Scott Benner 5:58
just made me think I've been saying arrows for years. I noise arrows. The Earth, the way that's spelled the way your name spelled, I don't know anything anymore. So

Skiy 6:10
anything, anything could happen? You know?

Scott Benner 6:13
I just thought like, how many calls have I been on where I've said arrows, I wonder if I'm wrong, that well, whatever. He would know. I don't know anything. But what I here's what I know, Ali pie came out with a pod long, long time ago. They eventually made it smaller. That was always just Omni pod. Then they came out with Omni pod dash, which I guess left them needing to call the original Omni pod something I would have went with OG but whatever, it's fine. And then they you know, arrows are er O S is the spelling. So you were always using that version of the pod. You never even use dash one. So you didn't have access to the newer kind of digital display on the PDM. And that kind of stuff is what you're saying?

Skiy 6:56
Yeah, no, it was all new to me. And we never did loop like if we just we were just on the standard system. You know, I actually right, right, when we got onto that Dash was just released and my plan was to get on dash but our insurance, our insurance didn't cover dash up until like, I don't know, I think I got a notice this this this last December that all of a sudden we could get dash. So we were we were just on the original,

Scott Benner 7:23
then how do you end up doing the getting involved in the research for Ali pod five.

Skiy 7:30
So my daughter's endocrinologist office, they were participating in the clinical trial, her endocrinologist that we ended up switching over to she she was like, I don't know, the main main person that was doing it around for us for our, our area. I don't I don't know how she got involved. But um, I got an invitation for the age group of two to five, to participate. And I was like, Absolutely, I'm jumping on that. That's amazing. Plus, I got to switch endocrinologist, which I was afraid to do. Because I I was afraid to, you know, upset my my other one who I wasn't necessarily pleased with the care we were provided. So I just jumped on it. I got a letter in the mail. And then I I called and you know, we were chosen to participate

Scott Benner 8:20
in it. So it's we're recording right now in March of 2022. How long would you say the LMR has been going on now? By the way limited market release for people.

Skiy 8:31
So we i What was it? It was beginning of February, right? Or end of January? January 28? Or something like that?

Scott Benner 8:38
You maybe you're like seven weeks into that part?

Skiy 8:41
Yeah. So we didn't get on we got on, I believe it was like, right, was like February 12, or February 14 is when we got on to the the actual limited market release Balam our product, and also the clinical trial product.

Scott Benner 8:57
Prior to that, I'm just trying to figure out when did you when did the clinical trial start for you?

Skiy 9:03
So we started the clinical trial, September of 2020.

Scott Benner 9:08
Oh, it's math time. So hold on. So September 2021 is a year and then that will still leaves like four months left in 2018. Okay, can you hear me? I can hear you. Alright, sorry. So there's some sort of weird like, like you were gone for a minute. It was not your fault. It was on my side. I was in the middle of doing my dentist on how long had been so I didn't hear anything you said after that. But I'm gonna just go through this again. So September to September is a year that I'm guessing there's like four months last 16 months and now. So you've been doing this like 19 months. You've been on hard five. Is that about right?

Skiy 9:47
Level? Yeah, I think so. I think that sounds right. Yep.

Scott Benner 9:50
Okay. Yeah. I'm so excited to be talking to you. All right. Excellent. Excellent. Excellent. So product that you're on right now in the limited market release. No different than the product you were using during the clip. Trial, I'd

Skiy 10:00
imagine, oh no, it's different. Oh,

Scott Benner 10:04
let's go back to the beginning sky. Okay, let's like we'll get in the Wayback Machine. It's September 20. G's Wow, a long time ago. How does how does it all work like clinical trial, you go to a doctor's office, you it was a trial site?

Skiy 10:19
Oh, it was. So I was so grateful that it was really easy for us everything was held at our endocrinologist office. So we didn't have to go anywhere that we weren't already normally going to. We just ended up having, you know, we had to go there more often. But then COVID was going on. So all of the visits that would have been in person and extra in person visits, were just fun visits,

Scott Benner 10:41
I see. Is there a bunch of training in the beginning? How does that work?

Skiy 10:45
So we went in, and I signed a bunch of paperwork, you know, legit non disclosure, and, you know, paperwork saying, you know, that they're, obviously it's a clinical trial, it's not FDA approved, anything could happen. And you know, there's a risk risks involved. And I'm like, well, that's just like diabetes. So there's just risks involved. So that wasn't a problem to me. But I, you know, we signed everything, I had to fill out a bunch of surveys, like pre, you know, how we manage things, I had a current at that at that current time, so that they could get a judge of where we were at with our management care, before we started the trial, and then we were there for a couple hours for that first visit, they trained us on how to use the, the new pump, we put it, you know, got it, got one on her, got all of our settings in and then we were sent home with a bunch of supplies. And they tracked everything they monitored or monitored heard, heard numbers the whole time. And then we had, I cannot remember, I want to say we had like monthly phone calls. As the as it went on, and they kept doing an extension that phone calls or the visits would become like spaced farther apart. But at the beginning, they were they were pretty close together just to you know, check in and make sure everything was okay.

Scott Benner 12:04
Okay, and so, did they ask you to manage any differently in the beginning? Like, I'm talking about the clinical trial part right now? Like, were you asked to just not do anything, like put in the carbs and not touch stuff? Or how did that all go?

Skiy 12:20
Go? I mean, I don't, I don't remember if it was necessarily said to us not to change any of the settings I, I didn't know that I was, this is gonna sound kind of ridiculous, but I didn't know I was allowed to even, like, you know, go make any changes to my daughter's settings or management, aside from what the endocrinologist were telling me, which is, I don't know. So I never made any changes. But there was a, there were a couple things we had to do. Like we had to participate in some activity. sessions where, you know, they wanted her to do like an hour or so of activity on a day. And, you know, I don't remember exactly how it was, like, you, you know, don't do it with with food or, you know, use their they have an activity setting that is on Omnipod five that they were kind of testing out. So we had had to do a little bit of that, but we didn't have to do anything crazy. Like there wasn't anything like, you know, she has to fast or we're gonna try, we're gonna try making adjustments to things to see how it happened. Like what happens? It was just kind of like they were monitoring how what, how we managed it and how our blood sugar was managed. And you know, nothing, nothing insane. Nothing crazy.

Scott Benner 13:33
And then they would take they were looking at her Dexcom data.

Skiy 13:36
Yeah, yeah. And

Scott Benner 13:40
there's nothing for you to do really, except live with it, I guess.

Skiy 13:43
Yeah, pretty much. It was just live with it. I mean, there was a couple of times, like I said, we had to do some extra activity, like they said, Okay, you know, have her go outside and play on her swings or ride a bike for an hour? And then let us know when you're doing that so that we can monitor it.

Scott Benner 13:58
Okay. Interesting. And how long did this go on for?

Skiy 14:04
The What do you mean, the this process?

Scott Benner 14:07
Like Was there ever a time where you were just using it? They were collecting your data, but they weren't really asking you to do anything?

Skiy 14:12
Yeah, most of the time. I mean, almost like 90% of the time we were they were just collecting our data and not asking us to do much of anything other than just, you know, manage her

Scott Benner 14:21
normally, they didn't need to know what she was eating or anything like that.

Skiy 14:25
No, they never tracked what they what she was eating. They never asked me anything like that. It was just, you know, treat her like, like you normally would, and we'll see how it see what it does.

Scott Benner 14:37
So initially, in those first, like, let's say the first six months of doing this, did you notice any difference improvement, decrease anything at all? They was notable?

Skiy 14:48
Oh, I mean, I the biggest thing when we started was we could sleep. Like we were able to actually sleep and I remember when I was in the office and one of the things that they do Hold me, as you know, because they had already been doing the trial with older age groups. They were like, one of the biggest things that we've been told is, you know, parents are getting, they're getting more sleep, and I just, I just bawled like, I just broke into tears. And I'm like, Oh my God, that would be amazing. I would love to sleep.

Scott Benner 15:18
Because I'm going out of my mind.

Skiy 15:20
Right? At the beginning, before we even had the pump, and we were on MDI, and before we had the Dexcom, like, the month, the month before, we had Dexcom, I thought my husband and I were going to get a divorce over the diabetes because of lack of sleep. So sleep was sleep was just huge. And that was one of the biggest things that I noticed was definitely we were able to sleep it was man definitely managed a lot better overnight, with the algorithm. I noticed that she, I mean, she was just in a better range. I, you know, the way that I was doing things was, like I said very, very before, that was very much just based on following my endocrinologist instructions, and not swinging from that. So based on doing it the way that they told me to do it, and then allowing an algorithm to do it, there were definitely noticeable changes.

Scott Benner 16:12
I'm gonna get back to them in a second. But so at that time in her care, you did not know about this podcast.

Skiy 16:20
No, so I didn't know about your podcast until July of last year. I have an adult diabetic friends type one diabetic friend, and she her name is Lisa. And she told me about your, your podcast, and I, I didn't know that. So I didn't have a phone plan that had like unlimited data. You know, my husband and I shared data. And I was like, Oh, well, I don't think I can use a podcast just like listen to in the car. Because I'll lose my data. I didn't know that. That was a thing that, you know, I didn't I that I wouldn't ever, like venture out into it. I just, you know, it's like, oh, podcasts, maybe they're not for me. I

Scott Benner 17:01
just for clarity, you could download them over Wi Fi and listen to them.

Skiy 17:04
I know. Believe me once I like tried it. I was like this. What was I doing? Like how stupid

Scott Benner 17:11
but I just wanted to be sure that you were managing in a very, like doctor office centric way. There's nothing particularly special, like what were her a one sees like prior to the clinical trial.

Skiy 17:23
So we were when we were diagnosed her a one C was a point five, and then up into up till the clinical trial. So we didn't start the clinical clinical trial until what she was in 18. She was diagnosed in 18. So two years, pretty much into her diagnosis. And her her agency was 7.9.

Scott Benner 17:44
So you're right. Seven Nights at a time. Okay. Yeah. All right. Well, then, so 8579 clinical trial, no podcast, what's the next day once he after the Omnipod five.

Skiy 18:00
So it was coming down. That was another thing, we definitely noticed. She was in range, which I, you know, I didn't even know about being in range until we got on the pod five, like I had the clarity up, but I didn't really think about the amount of time that she was in, in any sort of range, I know that it can vary based on what your, you know, your targets are, and why not and what your settings are. But, um, you know, they she was in range, like, 79% of the time and her agency was slowly coming down. Like it went from, like, 7.9 to, like, you know, 7.6 7.5 like very little, little, little increments. And then I, I didn't have like a noticeable note, like a really big difference until I actually started listening to the podcast. I, I started listening to you. And I was like, I didn't I like this is this just changes everything. You know, like, I can plan sky,

Scott Benner 18:55
what were you going to do? You need to be able to take phone calls. But when the Obamas call you for lunch, you need minutes, you know, they mean,

Skiy 19:02
exactly. Hold on to my data. So I was like, oh my god, yeah, I didn't know that I was allowed to make adjustments. I didn't think about all of these things. You know, all this frustration. My husband and I have had all of these years. It's like, it could have been avoided had I found Scott sooner. So, um, January, it was like the end of December. I had been I've been binging you since like October of last year. And I was, you know, I, I was like, I think I can I think I'm going to make adjustments to our settings through the clinical trial. There was a woman that you had had on, she was participating in the clinical trial. And she was talking about how she, you know, needed to make changes based on what you had. I think you were helping her like you were following her for a little bit. So I was like, Oh, well, she can make changes. I can probably talk to my endocrinologist office and see if they'll let me to, you know, make changes because they didn't kick her off the trial obviously. Right. So I emailed my nurses and I was like, listen, we can do this better. You know, like, I want to do this better going into 2022, I want my daughter's a onesie below, below or at six, at least, but definitely below seven, I'd like to get it to six, like, that's my goal by the end of this year. So I just started making changes on what I thought would work. And so right before we got off the clinical trial, which was I, in the beginning of February, right, when we got on the limited market release, her agency was 6.8. And that was just a lot that went from like, I think, like seven points, I want to say like 7.4, or 7.3, something like that to 6.8 within like a month of making the changes that I felt, you know, I got from you pretty much like I got out of the podcast, right?

Scott Benner 20:51
So this is so interesting. So I just want to recap a little bit when you are doing this on your own, and you're doing what the doctor's office is telling you, you're 798 in that range, the Omnipod five goes on. But still, your settings are based on what you and your doctor have talked about. And even with that you got more time in range. And you did lose a half a point off a one. See, it sounds like so then the next point, almost next point comes off seven, four to six, eight in a month. What did you change in that time that made that difference?

Skiy 21:28
So on my trial, our target was 140. And I like that's what my doctor's office had us set, it was 140. And I was like, Oh, well, I didn't know, we could go lower. I didn't know we could go to 110, which is the lowest unfortunately that the system has, but it's still good. So I I set the target to one time, that was one of the biggest things I did and then listening to your podcasts. And you're talking about, well, if you can manage at one, one at 200, you can manage lower than that, you know, so I started to set, set her alarms back on her Dexcom to, you know, lower to go off at a lower rate, like lower amounts. So like right now her alarm goes off at 130. Whereas before it was going off at 180. And they were okay like that, that was fine. You know, I've always been told, like, that's great. You know, 180 is good, that's fine. So I didn't, I didn't know it was I didn't think it was wrong. Like I thought what I was doing was right. But 130 allow, it allows me to catch it a lot quicker. So that was the two those are the two biggest things I did. And then I I've always Pre-Bolus. Um, but we've been better at making sure that we do it like sometimes when you have a six year old who wants to snack and you know, it's it's not always the easiest, but we've we've been better about just trying to at least make sure we got 10 minutes, at least a 10 minute Pre-Bolus? And

Scott Benner 22:53
how do you? How do you address A? Yeah, this is my question, how do you address a higher blood sugar on the algorithm? So if you, I don't know, don't Pre-Bolus a snack and end up at 130 you get a little beeping? What do you do then to do? What's your next step?

Skiy 23:14
I give her more insulin. I just I override it and give her more, I obviously I did something wrong or, you know, she got excited or something, you know, something, something happened that it goes up higher than I was expecting. And so I just give her more insulin.

Scott Benner 23:30
Okay, so you leave the algorithm to do that?

Skiy 23:35
Well, so the algorithm is going to just continue to give her you know, many, many bullets is like every five minutes, if it's catching that she's if it thinks she's gonna go high. But I, I just give her more on top of that.

Scott Benner 23:49
Okay, so you just get ahead of it, instead of waiting for the algorithm to do it. You do it yourself. Now, when that happens, does the algorithm not believe she has too much insulin and start taking basil away and you get another high? That doesn't happen?

Skiy 24:00
Um, I don't know we've had you've had situations of bowls like, or I've been able to get her to come down and you know, get her at a good steady level. And then I've also had situations where we end up with a low or we ended up with it going too high, because it'll cut off the that basil, the little mini, the little mini boluses or it'll cut off the basil if it thinks that

Scott Benner 24:24
you've given too much. Yeah, right, exactly. Here, go back and tell it. My example here would be if you had a meal at noon, and you told it down 30 carbs, and then an hour and a half later, you're at 130 Diagonal a barrel. And you come in and say, Alright, you know what, maybe that was 40 carbs, I'll put in another unit of insulin to cover the next 10 carbs. But you can't go back until the algorithm I really wish you would think about that meal is 40 not 30. If you can't do that, and if you were to put in a new 10 carbs at 130 to try to tell the algorithm I believe there's 40 carbs in there. It messes up the timeline a little bit, right? Because now those 10 carbs aren't really. They're not new at 130. They were new at noon. That'll make sense.

Skiy 25:13
Yeah. Okay. That's the other thing on. Oh, go ahead. Do you have another question?

Scott Benner 25:17
I don't know. I'm thinking through it as we're talking. So, you know, I don't prep for this at all. So so so when you put the insulin in, what could happen is that the algorithm could think, well, she put in more insulin, not that it thinks of you as a person. But that would be weird. If it did. But she, she put in, you know, another unit, we're just making up numbers. But the kid only 30 carbs an hour and a half ago. So now I have to quick take away the basil to try to make up for this extra insulin, which the ALS, the algorithm is going to see is unnecessary, because the algorithm believes that it's going to fix this 130 Eventually, you're fixing it sooner. So that the 130 doesn't become 170 before it turns back into 110. Again, is that all right?

Skiy 26:03
Yeah, I think so. Okay, um, I mean, it's not nor it doesn't normally cause a huge problem. I mean, sometimes they do end up having to, like, give her a little bit of extra uncovered food. If I do notice that maybe I maybe I did something wrong. And the algorithms between me between it giving me between me giving it sorry, me giving her insulin and then the algorithm giving her some as well. I mean, I have been told by like the nurses Hey, you know, watch when you're doing that because it is giving her that those many micro doses so you don't want to you don't want to overdo it. Yeah.

Scott Benner 26:40
Where do you have the most success with her blood sugar sitting on the algorithm? Like when you have stability away from food and away from cotton away from mealtime insulin? Where does she sits daddy?

Skiy 26:54
She's like, 130, which I would like her lower. And I have her target at 110. But I can't seem to get it to come down more. And I don't know, I'm trying to figure out like why why why that's happening. But she's usually if I can get her to sit steady, she's, she's sitting steady at 130

Scott Benner 27:10
What settings do you have access to with AMI pod five? Basil.

Skiy 27:16
Yeah, I mean, I can access every I can change everything I have. So I just have one basil program, because this is all all of that is new to me, you know, trying to figure out different different bases for her and whatnot. So I just have one Basal program that I use, you can use, you can add up to 12 different programs. So I just have that I have

Scott Benner 27:37
12 different segments in a 24 hour period or 12 different

Skiy 27:40
programs like 12 Different I believe it's 12 different programs like she's on bi a Basal program one right now, because I just I'd left it at whatever the generic name is for it, but you can add more in there and you know, rename them for, you know, activity or whatever you want to do. But I'm not comfortable and confident with that yet, so I haven't know that's fair.

Scott Benner 28:02
I was wondering though, like, like, so what settings? Like forget, like when you leave the algorithm like when you you know, open it up, but when you're inside the algorithm, it's making decisions based on basil, what else is there a meal ratio?

Skiy 28:18
Yeah, so it has all of the it has like the your insulin to carb ratios. It has the insulin action time which I just changed that after listening to one of the podcasts to see if that will maybe help us at all Oh, I don't have it in front of me. I left it out with my husband but um

Scott Benner 28:40
we'll ratio insulin action time basil. Is there a insulin sensitivity?

Skiy 28:49
Um, I believe there is and then it also does you know, you have your max your max Basal rate so it won't whatever that set out. It won't give more regardless of what's going on, like if I have it at like point five per hour. It's not going to give her above that for the hour.

Scott Benner 29:06
As if you said that as the max.

Skiy 29:10
Yeah, so yeah, whatever the max is for that it won't give them more than that.

Scott Benner 29:15
I didn't mean to step on you I'm sorry. Oh, no, go ahead. Correct. But you have also correction factor right like one unit moves are so many so you have Okay, so you've insulin action time correction factor meal ratio and basil. That's a lot to work with there

Skiy 29:32
we have our targets it you know, factors in the targets. Yeah.

Scott Benner 29:35
And it's shooting for you have it shooting for 110

Skiy 29:39
Yeah, I haven't won 10 all and I have 110 and then correct over 130

Scott Benner 29:43
But it can't get to 110 even overnight.

Skiy 29:46
It'll get I mean, it gets her to one time but it doesn't hold her steady at one time.

Scott Benner 29:50
She'll drift back up. Yeah,

Skiy 29:52
I didn't mean overnight generally, if I can, if we can. If we're having a good night like if we go to bed and we aren't having any problems with we just changed changed a pamper, you know, we had a really QRP meal or something and I was trying to get her to level out, then she'll she'll sit around 110 At night time when she's not really doing when she's not doing anything except for sleeping. But during the day, I can't get her to, to 110 I mean, she'll go to it, but she's not gonna stay at it, she'll stay at about 130 What's your Basal rate? Um, it's very, um, can I I don't have her. Do you want to do you want to leave and come back? Well, just Can I go grab it from my, my husband really fast. I would love that. Alright, give me one second, okay.

Scott Benner 30:36
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Skiy 34:10
Okay, so let me go into her Basal.

Scott Benner 34:12
You don't mind talking about this? Do you

Skiy 34:15
know, um, hold on a second. Oops, don't switch. I didn't mean to switch. Turn it. So we just got so be when we were on the clinical trial, you know, it was just the provided cell phone that we used. And then when we got on to a limited market release, we have used the PDM. And then I got the Samsung Galaxy S 10, which is the only one that's supposed to be able to work with this right now. And we had to carry around both devices for the last month, which was really frustrating because the app wasn't ready. Like it wasn't available. So the app, the app just became available a couple days ago. So I finally just switched over to having the one phone again which is really nice.

Scott Benner 34:58
Exciting. Yeah. Things are getting closer. Then.

Skiy 35:02
Every time I go, I take my daughter out and I have like all of her device. I have my cell phone and then this cell phone and then the PDM. Everyone's staring at me like what kind of business? Are you running?

Scott Benner 35:11
I'm selling? Leave me alone. I've got bills. Damn it. So what's your what's your Basal freight? Sorry? Oh my god, what does she wear?

Skiy 35:23
She weighs 50 pounds. So let's see from 12am to 6am. She's point three, five, from 6am to 12:12am. to midnight, she's point three.

Scott Benner 35:37
So I'm just gonna guess that our Basal is a little low.

Skiy 35:40
And it could be I've been messing with that too. Because the settings that the way they were, you know, the endocrinologist told me to have around Sorry, I'm stumbling on my words before. They were lower than that. So I've been like slowly increasing them. I'm just doing it with caution, because

Scott Benner 36:00
I don't please does she get low? Often?

Skiy 36:03
She you know what the clarity app said it? It's like been 4%. Low over the last seven days, which I don't think it's bad, or what are we calling Low? Low for that? It's thinks that low is below 70. Like I have heard settings at 70 to 130. So, but I don't she doesn't like she'll go. I mean, she's had some lows. But she generally she goes low. She's in the 60s for a little bit and then comes up.

Scott Benner 36:27
Okay. Well, I mean, I think what you're doing with the Basal is like a good move, because there's probably space in there with the Basal. I mean, if you're, if you're correcting 130, for an example, and it gets down to 110, and then wants to go back to 130, something's not holding it down. And the algorithm is thinking. I mean, the algorithm is thinking that you have too much insulin, so the correction looks like too much insulin to it. But if your basil was heavier, it might not feel that way. So there's, there's, there's space in there for you to figure it out. I think you get the basil straight first, and then probably look at the correction factor and make sure that it's it's pretty accurate. One unit per whatever.

Skiy 37:13
I definitely don't think it's anything wrong with this system. I think, like you're saying, it's just things that I need to get adjusted. On my end, I think the system is doing a fine job.

Scott Benner 37:23
No, for sure. I mean, it sounds like it to me, I'm just trying to help you figure it out. While we're talking about this at the same time, that's all.

Skiy 37:31
Yeah, I mean, if you could help me, that's great. You've helped me more without me even like meeting you. In the last, I don't know, six months, then anybody else has helped me in the last three and a half years. So I'm

Scott Benner 37:46
glad to know that I'm happy. You're feeling better. Really? Seriously. It's a big deal. I mean, she's six, eight versus eight, five and a couple of years.

Skiy 37:54
So yeah, yeah. And I'm confident that I can get her down to six. Like that's, that's my goal. That's what I'm gonna do.

Scott Benner 38:01
Oh, I think you can do? Yeah, no, for certain. Tell me a little bit about the sleeping for a second. You. You and your husband are having loving sex now instead of angry sex or you're not yelling at each other anymore? What is happening? What have I done for your life? Exactly.

Skiy 38:17
We have a six month old sleeping in our bed. So nothing's happening.

Scott Benner 38:22
We just not yelling at each other at least.

Skiy 38:25
We're just not yelling. Wow. Yeah, mad about diabetes. Basal, you know, we're married.

Scott Benner 38:35
I always think that some non married people must hear this and just be like, Oh, god, wait, what's gonna happen?

Skiy 38:41
I get worried when people are like, Oh, well, my husband and I don't we don't argue like, something's wrong with your marriage,

Scott Benner 38:45
you're gonna end up killing each other, then you're holding it. All right. I can be one of those stories, murder suicides, like, you know. They just they never seem to fight then all of a sudden, they just burn the house down with each other. Great. So okay, so just in general, better sleep. Right? More more consistent, solid sleep, I'm assuming.

Skiy 39:09
Yeah, I mean, I I'm not, I'm not worried about her going. Having a really drastic low in the middle of the night while we're sleeping. I do wake up to alarms. You know, especially I have her I have her at 130. And so if it drifts up even a little bit above that, then I wake up from from that, but it's nothing like it used to be

Scott Benner 39:30
I'm incredibly excited to get a hold of it because a 110 an average blood sugar of 110 is a 5.5 a one C so it's not out of the question to make it work with the device the way it's set up right now. I mean, the problem is that if you're not always I mean there's variables right? So you're not always hitting correctly and you you that 110 becomes 130 or 150 or whatever and then slowly this five five average because Not just five, eight, it becomes six, whatever. And that's how, you know, with the goal of 110 is a great goal. But if you're not keeping, I mean, if you're if you're spiking, spiking spiking, then obviously you're not going to get the 5581. Seattle, I'm trying to say that I think there's a way that based on how the algorithm is written right now, if you have your settings, right, and your Pre-Bolus thing, I bet you get closer to that 110 With more consistency, is my guess.

Skiy 40:29
Yeah, I gotta, I have to get the spikes to to stop because we do have spikes that I I'm not able to. I guess I don't know what I'm doing wrong. But she shows spike after meals. And like last night, she had a rough night with high blood sugars, which was due to like the one of the things that that does kind of is a bummer. You can't use the extended Bolus, unless you get out of the automated mode. And you can't use the Temp Basal unless you get out of automated mode. And you know, before we got on the system, we were using the extended Bolus and the and the Temp Basal a lot. And then we got on the system. And that was something that we we weren't really supposed to touch that I was gonna say that you were asking about the what happened during the clinical trials. So we didn't use those features at all. Because you know, the algorithm is supposed to be better than that. It's supposed to do a better job than what you know, we're we do. But I think there's scenarios where really, it can't predict it doesn't know what you're feeding, like what you're eating.

Scott Benner 41:30
So you can't know the list laid out the algorithms not going to overcome like for example, if your kids Basal rate should be more like five, like point five, and you have it at point three, the algorithm can overcome that. If you're going to eat cheeseburger and french fries, and have a massive impact from fat 90 minutes after you've eaten. It has no way to know about that. Like there's there's things that you can't do now without an extended Bolus, like me for me. I mean, I Bolus for fat. I just make an extra Bolus for fat. Like I know some people probably make extended boluses. And that's great. But I just usually wait a little bit of time and then Bolus for the fat before the spike happens. That just

Skiy 42:14
we weren't doing it all until I listened to that pro tip.

Scott Benner 42:19
You're gonna you'll listen you're you're on your way. You're totally one of these people who six months from now it's gonna be like, I have a five nine a onesie. I figured it out like for my daughter, I got it straight. So Oh, no, you will, especially now that you're sleeping more to being really serious about that. The Sleep part. We don't talk about nearly enough. It messes with you in so many different ways. And it stops you from making good decisions and remembering to Pre-Bolus and remembering to do other things. Because you're exhausted all the time. I I'm interested to see how you are just in a couple of months after extra sleeping. You know what I mean? It's gonna be a really big deal.

Skiy 42:58
I think that I I think that's going to be a huge thing for a lot of people. Just being able to get to sleep is is great. And I mean, I've been sleeping pretty well for the last. What did we decide? It was 19 months on whatever we decided since I've been on them. So you know, we've we've gotten pretty decent sleep for a while. Which I was like, but then I had a baby. I threw baby in the mix.

Scott Benner 43:23
I didn't do that. You know, you guys stop fighting long enough to make a baby. That's not you should

Skiy 43:27
know. IVF baby, I had to plan for him and spend a lot of money on on

Scott Benner 43:33
going to a movie or something. That would have been a better use of your time. I mean, I'm sure the kids terrific. I'm not saying it's great. He's six months old. You don't know if he's great or not.

Skiy 43:47
That's true. He's cute. He's super cute. Well,

Scott Benner 43:49
there you go. It looks good in the Christmas card. That's all you need. Okay, have a quick question. That's nothing to do with any of this. Are you from the northeast? You don't tell me exactly where

Skiy 43:59
I'm from. Do you not want me to? Well, you don't make

Scott Benner 44:01
worse although Well, are you? Are you in mass?

Skiy 44:06
No, I'm in Ohio. Okay, I'm born. Born and bred in Ohio.

Scott Benner 44:12
I've just been trying to figure out because you and one. So there's a person I know who's gonna hear this. Who says I'm the pod? And I don't even know. I don't even know if that person knows. That's how they say it or not. But they're the only person I've ever met who says that? And then you say it that way. And I was fascinated for a second.

Skiy 44:28
So how should I be saying?

Scott Benner 44:30
I mean, I don't know isn't an omni pod?

Skiy 44:32
Oh, I don't know. Uh, you do say that. I? I say Omnipod

Scott Benner 44:36
No, I know you do. And I'm not telling you. You're wrong. I'm just saying I don't hear it that often. I was trying to figure out if you and this person were from similar places, but you're definitely not.

Skiy 44:44
So I'm from Ohio. No,

Scott Benner 44:47
it's fine. I just I was like, I've been wondering for 40

Skiy 44:50
minutes. You know, Scott, I just pronounce things weird because I have an i in My Name Is your mother. It's my mom. My mom did it.

Scott Benner 45:00
wonder if that is just have something to do with it. Maybe you do think of eyes differently than I do, I think. I don't know. Okay, so where are you? My question here? Are there anything are the things about it you don't like?

Skiy 45:19
I don't like that I if I get out of automated mode to use the extended Bolus feature or the temporary the Temp Basal rate that it doesn't remind me to go back into automated mode, like it'll just keep me in manual and I, I want forever. Yeah, and I, and I'm, I've had two kids like my brain is, I have two kids, I deal with baby diabetes, my brain is shot. So I can't remember. And then I'll find myself, you know, she's she's rising up. She's high. And it's my fault, because I didn't put her back in automated mode.

Scott Benner 45:52
Oh, okay. So interesting. So, so Arden uses loop at the moment, it doesn't tell you when, like, if you open the loop, it doesn't remind you that you've opened the loop. So and, oddly enough, from hearing people talk about diabetes for so many years, I would tell you that most people want fewer reminders from their devices, not more. But I take your point. So you're saying also, how do we think about this, like in loop, we say open the loop, close the loop. But when you leave the algorithm on the pod five, like, is there a certain thing you're doing? Is there a function on your automated or you're in manual, auto or manual, okay? Right? That's easy. So when you go into manual mode, it stops making adjustments to oh, it stops making

Skiy 46:36
a manual manual just turns it into a regular pump, it just takes your settings and it just gives, you know gives based on the settings, it doesn't give those micro boluses or stop the boluses of the right or the

Scott Benner 46:50
right. So you're seeing when you go into manual initially, it's so that you can make a Bolus on your own for something. But then if you forget to put it back on, it's just running her Basal at point three, five or point three, and then she's rising up.

Skiy 47:02
Yeah, I mean, it's only if I decided I want to use the extended Bolus feature, which I know, you know, it's I don't have to use it. But there's been some times I'm like, I think I will do better if I do do this. Otherwise, like, when we were on the clinical trial, and we we never used that feature, we would just manually do it, where we would go, okay, you know, we're gonna split this meal in half, we're gonna get 50% now and in like an hour, we'll give the other 50%. So we would just do it that way. But I thought, you know, once we got on this, I would start just us trying to see if that would how that would work out with the extended Bolus, since I didn't get to play around with it. And I, I've just caught myself in a couple of situations where I don't put myself put her back end. And

Scott Benner 47:45
so your example, your example is again making me think your basil is not high enough. Okay, because if you probably right, because when the loop, oh, sorry, sorry, on the bottom, when it's an auto mode, there's so many different words. So it only been five is an auto mode. And the algorithm is working. Then if you're at point three, five an hour, but it thinks you're going up, it's giving her more than point three, five up to your max, what's your max again?

Skiy 48:14
Her max right now is only point five, right? It's point five per hour.

Scott Benner 48:20
I'll tell you what, if I was you, and I'm certainly not, this is definitely not medical advice. I'd make a Basal I'd make her Basal more like, well, let me ask this question. What's that? Oh, by the way, I just got a text. I just looked up on my computer. My wife's texted me Wordle in three, we are in a Bloodsport over who can complete Wordle quicker every day.

Skiy 48:44
Or cancel the rest of this go play Word.

Scott Benner 48:47
I have to go right now and beat her

Skiy 48:49
better than you're gonna give me advice. And now No, no, no, just

Scott Benner 48:52
I'm just amused. She knows I'm doing this with you. And she knows these things pop up in front of me. And that's how much it means that we're she's like Wordle and three, that basically I have to bleep this out what that basically means is you I've got you in vertel today there's no way you're

Skiy 49:10
I will be rooting for you. Do your work your way. Yeah, I just checked for Max Basal rate is point five.

Scott Benner 49:17
Okay, so my expectation is, is that based on our weight, she could probably handle more Basal and so I don't know if it's actually going to be point five but my question was going to be how often does the algorithm maxar Basal out? Can you see that?

Skiy 49:33
You know what I haven't I can I can look in history and see

Scott Benner 49:37
I'm excited because we're about to fixer Basal rate together. That's amazing.

Skiy 49:40
No, it doesn't say on here like you're maxed out.

Scott Benner 49:48
You can't see how you don't see like a graph.

Skiy 49:51
Like I can see like her and so if I go into the history, it gives me a summary of, you know what, what each of her her glucose numbers were in her Bolus is where and then the carbs that we did. And then if I go to auto events, it'll show me when it gave her but you know, insulin. So it'll show me like every five minutes if it gave her something or if it didn't, but it doesn't tell me on here, you know you've reached her your max. So if

Scott Benner 50:13
it's trying to give her insulin, and it's hitting her max over and over again, excuse me. Then my expectation is that you should make her basil that already and increase the max to give it more leeway. Okay. Right. That's what I would do if I

Skiy 50:32
raise her Max basil rate, obviously, as well.

Scott Benner 50:36
Yeah, I mean, definitely I would. Okay, right. So I know you don't want to make it crazy. But I'd like to, I'd like to see you give the algorithm some more space to work.

Skiy 50:46
So she's what she's with me 24/7 I homeschool her. So I I'm not afraid of like, you know, giving, putting her in someone else's care with changes. So I don't mind making changes. Obviously, I just, I'm just do it slow. I do slow changes like that way I can kind of keep track of like, what did I do? I

Scott Benner 51:05
think you're smart. I absolutely do. I'm not being sarcastic. I know. You're from Ohio. Possibly. You're not gonna like be able to hear it. But if this was if Vera was me, I'd make her basil point five and I'd make her Max basil like a unit. I'd be like, let's see what this thing can do.

Skiy 51:23
I'm gonna see what happens.

Scott Benner 51:25
You know, I mean, cuz then you're given the, I have to think of another euphemism. I was gonna say you're giving the algorithm more rope. But I don't think like a hanging is the way to think of it. But you're giving it more. You're giving it more leeway to make decisions on its own. Okay, that's what I'm thinking. I'm thinking that. I'm not listening. This is not a rule. But little kids prior to puberty, point one an hour per 10 pounds is a fair guess. So if she's point three, but she weighs 50. I think she's probably more like, point 4.4 or 5.5, something like that. Okay, I still I think point three is too low for her weight. And based on what you've said prior about where she's sitting stable?

Skiy 52:10
Well, I mean, she was she was lower than point three before I put her at point three. And I did point three made a difference.

Scott Benner 52:17
Oh, no, I don't you're telling me she was like point two while she was 50 pounds, like

Skiy 52:21
2.25. And her Max Basal rate was point four Sky Garden.

Scott Benner 52:28
You people all just stopped going to the doctor and giving them their $40 She sent me the $40. Like, that's just ridiculous point to over 50 pound kid is. I mean, there are some people who there are some people who don't follow the kind of rules their bodies don't need as much as maybe they need more. I'm not saying that. It's not it's not a blanket statement for every person. But point two for a 50 pound kid seems ridiculous to me, especially if they're not having any lows and your stability? Is it 130?

Skiy 52:56
Well, I think that the doctors goals is just to keep them. It's like I think our endocrinologist wants to keep her healthy. But I also think that they see a lot of people that don't manage diabetes very well, because I've I've been told by them like, you know, you you want to do better, but you're also doing really good compared to a lot of other

Scott Benner 53:12
people. I don't know what that means. That's both.

Skiy 53:15
Yeah. I personally like I, I think that they they can be they can do better to to help everybody, everybody, everybody has a different goal. And, you know, I want my daughter to be lower, have a lower UNC and be more in range. And, you know, I'm willing to put in the work to have that happen. But maybe, maybe they just don't have people that are willing to do that. And so they keep them at a safe. I don't know what maybe I'm making excuses. I'm making excuses.

Scott Benner 53:46
I'll tell you what, I'd like to see you stick up for that husband, the way you're sticking up for this doctor right now. What do you think?

Unknown Speaker 53:50
I don't know, I bet. I'm gonna tell him

Scott Benner 53:56
that you said I'm smart. I also told him you should have loving sex with him. But I don't think you're gonna tell him that part. Are you?

Skiy 54:03
I might I might go, I'll see.

Scott Benner 54:06
What I was gonna say is, if this is controversial, I don't know what to say about it. But if your settings are right, your blood sugar would be lower. And right to say that, you know, to say that I'm 130 is great, because other people come in here with two hundreds. I don't even know. I don't I don't understand what that means. He mean, like it would, it would it would be like if you walked into the doctor's office, and you're like, Hey, how are you? It feels good. Let me take a look at it looks at and goes. Hey Skye, you have a seeping wound on your arm, but we're not going to treat it because I just talked to somebody whose whole foot fell off. Like what is like, what does that mean? Like you're doing so much better than the lady whose foot fell off. So we're gonna we're just not even gonna dress this one because you're way ahead of her. I don't get I think it's laziness. I don't think the doctor is not a talk to people. And I think and with due respect to them. There's a rainbow of people that they have to To speak to and I'm sure that that goes. I'm sure that rainbow has a lot of different stripes in it. Some of those stripes are probably motivation. Some of them are probably economic, some of them are probably intellectual, there's probably a lot of different things about people, right that they have to deal with. But that doesn't change what the settings are supposed to be. Yeah, so the settings are the settings, given somebody point to who needs point five, and telling them they're okay, cuz they're doing better than somebody with a nine a one C, like, I don't understand what that means. So, you know,

Skiy 55:35
this is why I was in a bad loop of just keeping my daughter's a one C in the high 70s to low 80s for a year and a half, because I've just followed what I was told.

Scott Benner 55:47
No, of course, no, no shade on you. Like that's just what happens to people. You don't I mean, you got it now you're on your own. No, no. Do you think we should call this episode on the pod five and loving sex?

Skiy 55:59
Yes, you're gonna be disappointed if he doesn't get the loving sex.

Scott Benner 56:08
I don't even know why I said loving I think because otherwise I think of it is like angry when you're like, when you're arguing, but you're still doing it. You know? Like, you're like, this is off the rails guy. I'm so sorry. You probably wanted your mom to listen to this.

Skiy 56:24
Okay. Yeah. Fine. She was like, if you put if you knew my mom wouldn't be a big deal.

Scott Benner 56:30
Okay, all right. Number okay. Anyway, I'm being like, I'm joking. And at the same time, this is all tied together. If you don't think that your personal relationships aren't tied to your kids blood sugars or your blood sugars your way wrong. You know what I mean? Like, because when blood sugars are fluctuating when there you're constantly feeding lows or stopping highs or staring at highs, these things are stressful. They are omnipresent. They don't let you focus on other things. You take your focus off the things that are important, other parts of your life devolve. It's all like it's all touching each other. And by the way, did you hear a second ago when I said on the present? I didn't say I'm the present. Oh, got it. Okay. I could. I

Skiy 57:15
could I have said I'm the president. But I I would have said on the present. I

Scott Benner 57:19
know you would have but you're from Ohio, so I can trust you. Guys, what do you guys go out there, Dave Chappelle and Drew Carey said about it.

Skiy 57:26
We do have your carry. Yeah, I don't. We have Machine Gun Kelly. I saw on the news. today. He's holding a concert in Cleveland. It's there or he's doing a well he's from he's from Cleveland. And I'm outside of Cleveland. I'm like 40 minutes outside of Cleveland Show Helens

Scott Benner 57:41
a bunch of property in Ohio. And he lives there full time.

Skiy 57:46
I don't know why.

Scott Benner 57:47
He said I've heard him in an interview. He said he likes the small town feel of where he's at? Oh, I don't know. You're like, I want to get the hell out of Ohio,

Skiy 57:57
too. But I know my family would never visit me.

Scott Benner 58:01
Oh, they definitely wouldn't. I my brother moved to Wisconsin. I've still never seen Wisconsin. He's like, why won't you come here? And I said you moved to Wisconsin. No offense, Wisconsin. But I mean, they're like, Ohio, right? Yeah. Well, I don't even know what that means. I mean, there's a lake here. I can see it. My brothers. It comes to the lakes. I'm like, What do I do eight minutes after I've seen the lakes. What are we doing next? So my vacation time? You don't I mean, sky like I don't get a ton of time off.

Skiy 58:26
You don't want to go to Wisconsin? Well,

Scott Benner 58:28
I mean, we just need somewhere usually it's easier. And I'm teasing. Mostly, I'm sure Wisconsin is a lovely place. And I don't want to hear from your pupils. So just please don't send me notes telling me. I'm sure it's lovely. Although for my brother's description, it's freezing cold in the winter and sweltering hot in the summer. So that's not a ton of fun for me. Okay, hold on, what is it? We don't know about? Um, the pod five that you wish we knew? Like, what do you want to tell us?

Skiy 58:56
Um, so I really I liked the activity feature. I don't know if you've heard about the activity feature. I do like that a lot. I think it's, it's been beneficial, like when we are when my daughter's playing or she's doing something really excited that she's really excited about and I know, she's gonna have a lot of a lot of activity or excitement and for sugar is probably going to drop, it's, it's really great to just set that. Like when we were on the trial we were we went on a road trip and we were in Tennessee, and we were hiking a mountain. And you know, that activity feature having that on, she didn't go low during the entire hike, which was really great. So I really like that. I think it's really cool. And it goes right back into automated mode. So I don't have to be reminded which is

Scott Benner 59:38
wonderful. Can you set a length of time for

Skiy 59:41
Yeah, so what it does is it it changes your target to 150. And you set the length of time for that. So you one hour two hours, six hours. I don't know what the the max amount of time it can go up to I've never tried that because my daughter's not active for that long. But you know, we we've used it for a variety of different situations and it's it's been really, it's been really great. I really like it.

Scott Benner 1:00:03
Cool. Okay, um, still holds up to 200 units, like the old guys 85, minimum is 85 What else? What else do we need to know? Like? Would you? Would you say that it's a, I mean, I guess you would write it's a big difference between managing without an algorithm for you.

Skiy 1:00:24
A big. Yeah, I don't know what it's like to be on loop I listened to, you know, mostly just from your podcast, conversations regarding loop and I feel like, loop does a really, really, really good job. And I am hoping that people who are going to be moving from loop to the, um, should I say Omnipod. Five, that, that they're not going to be disappointed. Because I think that, you know, there's things that it like the target, for instance, I know, that's going to be a big difference for a lot of people, because I think what you get, you can set your target a lot lower than 110. I, so I, I'm hoping that people aren't going to be disappointed in that. But for me coming from what I what we were, you know, the original Omnipod to this. I, I love it, I think it's great. I'm trying to think of other things I love about it, I love that it's just one device. That's amazing, I cannot tell you how disappointed and how sad I was carrying around those two devices for a month. And I felt like a privileged child, like crying, you know, because oh, I What was me, I have to carry two devices again. But like just having this, this, the cell phone with me is wonderful. So I love that the distance I don't know with Dash, how, like how close you have to be to the child or to the person, whoever, whoever has diabetes, whoever has the pump, how close you have to be in order to dose them. But I know with the original, I would have to be like on top of my daughter. And you know, it was supposed to be a five foot range. And there were times where I had to be like touching her pump pretty much in order to get it to dose. And with this, I've been able like I'm in my room right now my house is small, but I'm in my room right now she's out in the living room doing something I can dose her right now. And it wouldn't be an issue where she can be outside and I can go sir. So the range is really good, which I love.

Scott Benner 1:02:20
Excellent. You know, I want today I'm Arden did like this market research thing for Omni pod when they were making the new PDM, which is now the old PDM. And it worked. We were in an office, it worked like 25 feet away from the pod. And I remember that the F TC is that right? FCC or the FTC, whichever ones in charge of like signals? Made them turn the power down on it.

Skiy 1:02:46
So I did notice on the trial version, it had a much bigger I had a large longer range than the this version. But it's still good. Like it's still really good.

Scott Benner 1:02:58
Good. Yeah. And you don't have to have just so people understand like the the device who you have. You have the PDM. Right. Are they calling it that now? Are they calling it something different?

Skiy 1:03:08
No, it's a PDM. Yeah, it's, it is a PDM and my PDM that I had, when they sent it to me, it actually was defective. So that was the whole thing. They I had to get a new one. And then you know, I get the new one. And then they get the app out. So luckily, I don't have to use use that. But I didn't I don't like the new PDFs that they compared to the well, I guess on the trial, I was using a cell phone. Oh, that was the other thing too. I'm sorry, I'm going everywhere. Now. The the PDF that they provide you with, it doesn't do like your Dexcom. It, it just shows you the graph. When I was on the trial, the Dexcom was built into the app. So everything you did for Dexcom was through the app, which is kind of a bummer, too, because now you have to open up both the the app for the Dexcom if you want to, you know if you're if you're gonna change the Dexcom or do anything with Dexcom, you have to open up the Dexcom app. And if you're gonna do anything with that,

Scott Benner 1:04:05
what would you what would you do with the Dexcom? Because you're bringing up something that I've noticed 1,000,000%, which is we don't even look at the Dexcom app ever anymore. Like it's never I mean, it's open, it's running, but no one looks at it because it her CGM informations in the loop app.

Skiy 1:04:25
I can't turn off alarms and the loop app. Like I was able to do that or not the loop sorry, my dad in the Omnipod find out. I can't turn off the alarms. Like if I get a high alarm or a low alarm. I have to go into the Dexcom app to turn it off. And when I was on the clinical trial, I didn't have to do that because you accessed the app through like you access Dex you access the Dexcom Web Summit. I'm saying we're through the Omnipod app. And now you don't do that we just have this

Scott Benner 1:04:56
graph. What do you mean by turn off the alarm? Do you mean like do do turn on and off alarms very frequently.

Skiy 1:05:03
Like if I get an alert that says she's going high, or an alert that says she's going low, I have to go into the Dexcom to do it. To do what I'm not following you on this, like, you know, where it says, Hey, your, your, your a lot, your high, your blood sugar's high, and you have to hit okay. And if you don't hit okay, then it just keeps telling you. You don't have these issues because your daughter's blood sugar's in better control than mine.

Scott Benner 1:05:23
I'm like, I'm not sure what you're talking about. So Arden's phone has come up as Oh, I think you can go into your eye. In an iPhone, at least, there's different ways that you can get notifications, they can either pop up on your screen and need intervention. Or you can have them just roll up on the top of your screen and then go away on their own. So we don't have ours, ours don't stay around, they go away on their own.

Skiy 1:05:52
Oh, yeah, I don't know. Like, last night, for instance, her sugar kept going to like 133 135. And every time it went off, it would it would make you know, a noise and then I'd have to go into the Dexcom app, and I'd have to hit okay. I didn't pay then. And I can put it on to like, you know, never, never repeat or repeat every hour or whatever. But yeah, I have to hit okay, if

Scott Benner 1:06:17
you don't say okay, it just keeps telling you, like beeping over and over again.

Skiy 1:06:22
Like it'll, it'll go it'll stop and then it'll do it again.

Scott Benner 1:06:26
Are you saying just to make it disappear off the screen like the video representation? No,

Skiy 1:06:30
get it to get like I have her setting up. Never repeat right now. Let's say like I have, if it goes off, it's never repeat. If her if her sugar is still high, that way, it doesn't keep telling me I just, you know, go in and I'll fix it or whatever. But if I if I don't do that, and I just leave the warning on there. I know you're making me feel like I'm crazy. I don't think I'm crazy.

Scott Benner 1:06:51
I don't think you're crazy, but I don't I am definitely not following what you're saying.

Skiy 1:06:57
I don't know what the time different, like every

Scott Benner 1:06:59
five minutes or whatever. Yeah, again, but you know what, but what happens if you don't hit okay?

Skiy 1:07:08
I just keeps chiming. Like after, like, it'll stop and then it'll it'll go beep, beep and then you know, I won't do anything. And then like five minutes or 10 minutes later, it'll go beep beep like, hey, hey, dummy, come in here. Look at me. I'm beeping at you.

Scott Benner 1:07:22
Alright, so once you interact with it, if you think it feels like it knows you're there, and you're aware.

Skiy 1:07:29
Yeah, it's like it needs me to say okay, do it.

Scott Benner 1:07:31
Hmm. Interesting. I've never thought like that once. I could be completely wrong.

Skiy 1:07:38
Do I have like some special Dexcom No, I

Scott Benner 1:07:41
could be completely wrong. I mean, and Arden's. I don't. I don't want people to think Arden's blood sugar never moves around. It's been incredibly stable today, but it'll go up and down. Like we get alarms. You know what I mean? So, I mean, she's a little high right

Skiy 1:07:57
now. It's just more needy than yours. Okay. No,

Scott Benner 1:08:01
I, I'm not following what you're saying. So what I will tell you is that on loop, I think that Ardens Dexcom app becomes almost unnecessary. Like we use it probably, I mean, to swap sensors. And if we ever calibrate, and other than that, I don't ever see it. And she doesn't she never looks at it. If she looks at what her blood sugar is. She looks at Hawaii. Oh, interesting. She looks on the loop app, which on the pod fives app, you can see your blood sugar, right?

Skiy 1:08:32
Yeah, I can see it. Yes. Okay. Or?

Scott Benner 1:08:37
i To be honest, I have a widget on my screen now. For Omni for Dexcom I barely ever see the Dexcom app because the widgets right on the front of my phone every time I open it up. So you have an omni Do you have an iPhone?

Skiy 1:08:52
I do. Yes. i So i on the follow up with my iPhone. But her the phone that I have to use for her is the Samsung Galaxy S 10. Which I just I hate this phone

Scott Benner 1:09:04
isn't her phone. She get a phone?

Skiy 1:09:07
She it's her? It's her device? Yes, this is what we use for her. But I'm not a I'm not an Android person. I'm an AI person. So I don't I don't know anything like I don't know how to I don't know I have to give to my husband and say here set something up because he has an Android.

Scott Benner 1:09:24
I can't wait for them. I can't all these devices. I can't wait for them to cover more cell phones, iPhone, Android everything. And for this to become the norm which it will be one day I just can't wait to get to it because I don't disagree with you like carrying extra devices sucks. Like the one thing that's great about loop is that the loop is an app. So it's right. It's right on Arden's phone. She doesn't have she hasn't carried Arden hasn't carried a PDM and so long, like I'm not 100% sure she would know what it was if I gave it to her. You know,

Skiy 1:09:55
and that's how this is now with this app. You know my daughter can just carry this phone around but yeah

Scott Benner 1:10:00
No, I know. Yeah. But it only works right now on that one phone, right?

Skiy 1:10:04
Yeah, only on this one phone and the the app, they kept asking me like, they would send me a survey and stuff. They asked me questions about if we were using the app or if we're using PDM. And I'm like, we can't use the app, the apps not available. And I was on the phone with with them when my PDM was having failures a few weeks ago, and they kept telling me that they weren't going to release the app on the limited market release. So I'm very, very happy that they change their mind.

Scott Benner 1:10:31
I don't know anything, but I bet you that it just happened sooner than they thought. So they got it together. And they're like, let's do it is what I would guess also on the pod if you're listening, why do I not have on the pod five yet? What is happening right now? You know how much better I would have been on this episode sky if I had this thing?

Skiy 1:10:48
Right. Wouldn't make probably make me look really dumb. Oh,

Scott Benner 1:10:51
no, I'm just saying I would understand things better. And I would sound more together. And you know, we I really?

Skiy 1:10:56
I have a PDM I'm not using if you want to look at it.

Scott Benner 1:11:00
No. Wait, my turn like everybody else. That's fine.

Skiy 1:11:04
Well, you wouldn't be able to use it. I mean, you need the pods. But

Scott Benner 1:11:07
yeah, no, no, I'm supposed to get on the pod five, as soon as I'm not sure I'm supposed to say this. But anyway, my expectation is that I'm getting on the pod five soon after the limited market release is over. But I'm saying Chop chop. You know, I mean?

Skiy 1:11:24
Yeah, absolutely. Yeah, I wonder I'm interested to find out if you're going to be disappointed.

Scott Benner 1:11:31
at all, you want to know what I love. I

Skiy 1:11:33
love love, love, love, love Omnipod. But just from you going from a loop, from a looper to the, you know, this algorithm, I'm just interested to see how it works for you.

Scott Benner 1:11:42
Arden is six months away from going to college. So anything perceived that I'm going to lose about loop I'm going to gain in other ways. One example, on the pod five does not require a linking device between the phone and right. And the and the device is the pump, right? So huge. That's a huge leap for us. So and also, by the way, the Omni pod five talks to the Dexcom directly. You don't even need the PDM to be near for the algorithm to work. No, right? Yeah, you don't, it's great. If you took Arden's phone and chucked it out the window, her loop would stop working. Oh, wow. Right. If you lose the little thing that she's got to carry in her bag, constantly, she's using something called an orange link, this little device that links her, lets her phone, talk to the pod. If that thing if the battery dies, if whatever, she loses the loop. On the pod five comes from a company, it shows up at your house and it works loop has to be set up on a computer and you need to be an app developer to do it. And there's all these other things. What I'm telling you is that one day, that loop apps gonna need to be rebuilt or something like that, and my daughter is going to be away at college. And can you imagine if I got her on the phone, I said, Okay, get out your laptop, open up your developer account like but she'd be like, no, like, I don't know, do any of this. So there's that. Those are my big ones, honestly, like those two things are a big deal for us. Well,

Skiy 1:13:13
those are huge. I mean, those those in itself, you You are right, I I think you're gonna love that

Scott Benner 1:13:18
right now. Do I her target blood sugar on lupus 85. So that, you know, that might be tough to walk away from. But at the same time, I think there's got to be a way to put the settings right where this happens. I keep getting notes from people who are like, Hey, I'm using an algorithm. And I have a constant blood sugar that's under the target range. Like I get a lot of notes like that from people. So I think it's doable. What's I need?

Skiy 1:13:48
That's what I need. I need to be able to accomplish that. I've

Scott Benner 1:13:50
never once got that note from you. But

Skiy 1:13:53
I don't maybe you wouldn't. Maybe I sent it. You didn't look at it.

Scott Benner 1:13:57
But I think I just want to get my hands on to try it. Like if I can find stability for Arden around 100 for the four years she's away at college. Amen. You know what I mean?

Skiy 1:14:09
So when you get it, you are going to contact me and then help me is that what you're saying? Why this

Scott Benner 1:14:15
podcast so everybody can hear it? But I mean, do you want one?

Skiy 1:14:18
Directly? You'll just help me totters numbers, because

Scott Benner 1:14:22
I'm gonna I'm gonna make what you want to really know what I think. What Alright, well, first of all your your episodes going up like tomorrow, like you're gonna have to wait to hear yours. Okay, so um, but what I what I'm going to do is I'm going to make myself proficient at it. And then I'm going to do a Pro Tip series with Jenny about it. Oh, that's great. Yeah, that's all and you know, on it, we'll do as much as we can. Just like we always have been trying to get as much information as we possibly can for oh, if I if there's things

Skiy 1:14:51
that I have questions about, I can email them to you and you can maybe include them in the pro tip. Oh, please.

Scott Benner 1:14:57
I'm going to be looking for questions from people. It's okay good. Yeah, there's no end of this podcast, this is gonna go on forever, don't worry. That's why I stopped eating, you know, like, you know, I get sick or something. I mean, you know, I did eat an egg today and nothing else so far, so I'm probably not gonna live forever. But as long as I can, I'm gonna keep trying to add value into the community for people who use insulin, you know. So that this is one of those things.

Skiy 1:15:24
Did you have any more questions about the? I don't know, I don't even know, trial or anything?

Scott Benner 1:15:29
Well, I mean, it sounds like it went well, it sounds like that it was unobtrusive in your life, which, you know, we should say to people do clinical trials, they help people, you know, it sounds like, it sounds like you're happy with the device. It sounds like you're still trying to get the settings set up. It sounds like there's a lot of ceiling still above you here. But even if you have your settings wrong, and you're not always Pre-Bolus thing, it sounds like you're getting a six, eight a one. See? That's amazing. You

Skiy 1:16:00
already told me it's six, seven cents. Like it clarities estimating six, seven. So I'm thinking it came down a little bit more to even say, I've been on this new system. Yeah,

Scott Benner 1:16:11
I mean, I would tell you just you got to Pre-Bolus It's the biggest part of all of it. It just really is. You know what I mean? Like if you don't want spikes, Pre-Bolus if you know if you want you know, you've probably heard me say it on the podcast before but if you're is going to have a snack and you feel bad about making our weight. You could over Bolus to cover the spike a little bit. You know, I mean,

Skiy 1:16:33
yeah, been I've been doing that. I just I tend to like last night I did that with macaroni and cheese. And it was gluten free mac and cheese because I gluten free. And I she I was just fighting highs. I messed up. I don't know what I did. But yeah, hard

Scott Benner 1:16:50
eye rolls and the fat and the slow digestion. You know, from the fat. So I mean, you just need to know, that just needs a lot of insulin. That's

Skiy 1:17:02
my supplement is I gave her a high dose up front. And then it's like, it's it. It didn't cut and I we Pre-Bolus for it. But then by the time everything kicked in, you know, it was out of her system. Like the insulin, it's like the insulin had already hit. She ended up with a low because I gave her heavy Bolus.

Scott Benner 1:17:24
And then she got hit harder by the fast and the slow digestion later. So yeah, so I mean, you got to Pre-Bolus Then you look at that situation, you say, Okay, I still needed the Pre-Bolus. Not as much of it. I probably need to secondary Bolus with that insulin plus a little more later. Yeah, that would be my guess, learning. I'm

Skiy 1:17:42
trying to learn that. Oh, it's

Scott Benner 1:17:43
interesting to talk to you too, because she's had diabetes for a couple of years. But you've only really been in the fight for a couple years. Like how long has she had it? Versus how long do you feel like you've been? What's the word I want? Like, like, how long has your awareness been higher, that there's more that needed to be done?

Skiy 1:18:00
It really started with the trial. Like that's, that's when I when I started seeing changes and movements and feeling like maybe we were accomplishing something that we weren't accomplishing before, because I felt so stuck. So, like a year and a half ago, but then it really, really really hit me when I started listening to the podcast. Okay, well, yeah, it's like, I can do this, like, I absolutely can do this. I'm glad

Scott Benner 1:18:23
and also to me, then that means the time she had diabetes before that you don't have to Don't feel bad about that. You know, I mean, like, you're just getting into it now. And you're figuring out very quickly, so I get a lot of yelling. Say that again? I'm sorry.

Skiy 1:18:39
I said it feels like we're starting over. Yeah, you know, that's, that's kind of the way I looked at it is, you know, we're obviously in it, we know we have better tools than we did, obviously when we started and my mind is in a lot better place than it was when we started. But we're starting over to try and achieve some goals.

Scott Benner 1:18:56
It's an incredibly incredibly common story. So I wouldn't spend five seconds feeling bad about it I'd feel great about what you're doing. You know, I do feel about it. Good. Excellent. So you're gonna keep using Omnipod five You're not getting away from it.

Skiy 1:19:10
Oh, absolutely not No, I I am like so nervous that I'm very nervous that when it's commercial the commercial release comes out that my insurance like will not cover it I don't know why I'm just like freaking out about it because I can't like I can't get off of this I need this well they cover dash right? They do Yeah, and I'm hoping that because of that but I just you know I don't I don't know what's gonna happen and I just makes me nervous so try

Scott Benner 1:19:35
not to be nervous they say that worry is a waste of imagination. So oh, that's like that. Yeah, just just don't worry about things you don't know to be true that's all that's super easy right? Meanwhile, your your six months after having a baby you're probably still dose to all those like crazy, like mommy hormones and everything right.

Skiy 1:19:56
left in me Believe me.

Scott Benner 1:19:58
Oh, yeah. Hey, You probably are having weird dreams do you think all kinds of crazy stuff is gonna happen to you? Most of my kid is 22. And last week, we were in Florida for baseball thing. And they had a little problem with their transportation, right? Five days after they had problem with their transportation my wife goes to sleep next to me Falls asleep in a split second stirs. And in her sleep says there's not enough space on the bus for the boys. So don't expect any of this to end anytime soon.

Skiy 1:20:30
My husband and I were just having a conversation about this the other night he was making some weird noise in his sleep and I had to hit him in the face. Because he was driving me insane. And I and I I was just making fun of him and he just he just told me like sky you eat Oreos in your sleep. And, you know, I I've been working with dogs for the last 17 years. And he's like, and one time you got that up out of that and you tried to put a dog in a crate on our wall so I don't want to hear it.

Scott Benner 1:20:53
So wait, you get Oreos like real Oreos or fake or?

Skiy 1:20:57
No, I used to actually I used to sleep eat Oreos. It was a problem. It was an actual problem. For crumbs in my bed. thing. It was a real thing. That's amazing. Yeah, I would get mad. I'd be like, where are the Oreos? You know? And it started when I was in high school. My mom would be like, Hey, you came in. You came down and you eat them tonight? Like, what do you mean? Where are they and you punch this guy in the head? I smacked him in the face.

Scott Benner 1:21:23
For the week? No, no, he's

Skiy 1:21:25
he's very loving.

Scott Benner 1:21:27
Not like you know. Okay, well, all you single guys out there. Good luck. Alright.

Skiy 1:21:37
Did you do you have I was wondering, I was prepared in case you're going to ask me about autoimmune in my family, because I know that's the thing that you do.

Scott Benner 1:21:45
Go ahead. Do it. Okay. Well, you hit me in the face, do whatever you want.

Skiy 1:21:53
I have hypothyroidism. I have hash motos. And I haven't, which I don't know that I've ever heard you discuss it the MTHFR gene mutation I have that my daughter has that which is not an autoimmune disease, but it does. It's a gene mutation that can affect it can cause issues with your immune system. And my mother, like we pretty much just have thyroid issues. My husband doesn't have anything that he's aware of. It's the mother effer No,

Scott Benner 1:22:30
it's exactly what it looks like. A mother effer mutation MTHFR gene variant looks like mother effer gene variant. But wow, methyl entra trufa hydro folate read Oh my God, never say that. Just say Mother MTHFR is better. What is it? Oh, it's a rare. Congratulations.

Skiy 1:22:52
No, no. So actually a lot of people have it but they don't they most most medical doctors which go go figure they don't think it's a big a big deal. And the only reason I even know I have it is because I went through IVF and all this infertility issues for eight years. And so I asked to be treated or tested for it because it can cause miscarriages and when I and I have a double copy of it, and I passed it on to my daughter, but what it does is it like your body can't process like synthetic folic acid, you can only process like methylated folate, methylated, B 12 B six, it can't. So you you end up normally with like vitamin D, vitamin b Sorry, deficiency. And you can you can have a homocysteine level like increase which is an amino acid like your, your body normally will get rid of this the homocysteine levels. And if you can't, if your body can't do that, then you can end up with like heart disease, various cancers, stroke, people that have Bipolar in their family anxiety, stuff like that are symptoms of it. And it can cause miscarriages because the clotting factor issue. So I was looking, I've been recently looking at research to see if there's anything that like ties in with it, you know, um, autoimmune diseases and whatnot. So and from what I can tell it, because it can affect your immune system overall, it definitely can play a part in it. And I know like I was reading about I delayed vaccines and whatnot with my son. And there were recommendations if you have like type one diabetes, and the mth FRB mutation in your family, you know, different schedules and stuff for delayed vaccines because of how it how it can affect your body. So yeah, it just something I never had never heard or I haven't heard yet, and it wasn't sure if you had heard of it.

Scott Benner 1:24:44
No. Is there anything you can do for it or take for it or no?

Skiy 1:24:47
So you know, it's funny because I didn't know I had it when I was pregnant with my daughter and I took folic acid the whole time. They tell you, you know take folic acid when you're pregnant, but I really should have been taking fully methylated folate, so you just have to take math deleted, fully like in its purest form, and then the the B vitamins methylated B vitamins and you don't eat, you can't eat anything that is enriched with folic acid. So like enriched rice bread, so I, I stick to a gluten free diet because of that. And my daughter, I don't she has the mutation, but I don't restrict her. She does eat a lot of gluten free things because I eat them. But yeah, mostly you just you, you can't eat those types of process things because your body can't can't process it. Right? Because it's it's synthetic.

Scott Benner 1:25:35
Interesting. I'll have to find out if I can get somebody on who understands it, because that is kind of fascinating. I was looking at it while you were talking. And I would be interested to know more. Nobody else though. Just the hype, the Hashimotos for you, any extended family have anything?

Skiy 1:25:51
No, not that we're aware of. And honestly, like my thyroid levels, it's I love I love all of your thyroid series and tips because my thyroid levels were in what they consider a normal range. The only reason that they were ever tested was I started in fertility treatments when I was going to have my daughter. And they you know that reproductive endocrinologist they test your thyroid? And it was like a four and they were like, oh, no, you can't have you can't be at a four, we need to get you down. You know, we won't we can't do treatments on you if you're this high. But my other doctors said that that was normal. So I wouldn't have been even treated for it had I not been going through fertility treatments. And my, my mom, my mom has, I don't know what her levels are. But my mom has hypothyroid as well. And then I asked to be tested for antibodies for Hashimotos. And, you know, luckily, I've asked for all of these things. So they've been brought to my attention. But had I not asked for any of them, they wouldn't have been

Scott Benner 1:26:47
interesting. Wow. Okay, I appreciate you telling me all this and for sharing all this information about on the pot five and your experience. This has been very cool. I expect to have a lot more conversations with people about stuff like this in the future. I think algorithms are going to be a big part of living with diabetes moving forward, and I'm excited to talk about it more with people. But yeah, I actually Terrific.

Skiy 1:27:11
Thank you, I share more of our Omnipod five journey on my Instagram I try not on my I have like a page that I do for it because my family and friends don't really care. You know, but I like talking about diabetes. So I have like a page that I I share more of our journey on if anyone's interested. What's it called? It's called our wonderful life. But it's wonderful is Oh, any like type one. So it's our wonderful life and I'm on Instagram and I have a Facebook that I do for that which I that's how I had posted about it through there. And I I got I got scolded by Scott on your Facebook. You know, you didn't scold me but you said on there like hey, you know you can't share things from from your pages. So if you want to talk about this, then let's

Scott Benner 1:28:00
Yeah, hold on a second. First, I want to get out your Instagram handle. So what is the

Skiy 1:28:06
at our our sorry, at our wonderful life? So it's our wonderful life. Oh, me. Dr. SQL.

Scott Benner 1:28:14
I'm trying to find it. I'm on the what they call the Instagram are Oh, you are? That's first, right?

Skiy 1:28:22
It's Oh, no, it's Oh, you are? Wait, isn't that

Scott Benner 1:28:27
wonderful?

Skiy 1:28:29
o u r o n e de RF ul li Fe

Scott Benner 1:28:36
I got it. I say o u r o n e d e r f you li Fe right. ul li fe. Okay. Thank you. So that's on Instagram, and back to what happened on the thing. So I have what you might call a popular Facebook page. You do? And And here's one of the problems that comes with having a popular Facebook page. People want to steal your people. So that we end with people okay, yeah. But no, but what seriously happens is you become like, I mean, for me, at least I feel like I have a responsibility, right? So if I start letting people sell things, and they're like, I have a T shirt I want to sell or my Facebook page or this or that. Like, I can't keep on top of all that. And so I can't What do I want to say if I can't be sure that what's being shared is what it purports to be. I wouldn't feel comfortable with it being shared. And because I don't have time to do that. It's just a flat out. It's just it's a flat rule. Like you just can't pimp yourself in there.

Skiy 1:29:51
Oh, no, I Yeah, yeah. Yeah, absolutely. I totally get it.

Scott Benner 1:29:55
I just keep up with it. That's all I am. It

Skiy 1:29:58
amazes me that you are like mediate your Facebook group with 20 Some 1000 members on it. It's incredible. But I was I, it was just funny because when you did that I was like, Oh no, I just like I felt like I was getting scolded by like, my dad or something

Scott Benner 1:30:11
like that at all. got upset, like, I was not upset. I'm just I'm just, I think I'm just pretty matter of fact online and I think that doesn't come off well sometimes. But okay, now I just call you out on it. Oh, no, I appreciate, you know, they seriously like, I can't keep up with it. So I barely moderate that Facebook page. Like, there's really, I mean, here's the secret of my Facebook page. There's no real moderation. Like the real like, like, like, you know, if people are terrible, you know, know, if people are like, you know, my gonorrhea went away when I like, you know, that kind of stuff goes out. They we delete that stuff very quickly, as fast as we can. But people's conversations, I just want them to have their conversations. I just can't let it get. I mean, I guess Think of it this way. Like, if I don't know, if a company selling widgets, their biggest problem after they've made a good widget is how to find people who want to buy widgets. And my Facebook page is so full of people who have diabetes, that they to a nefarious person would look like fish in a barrel. And I do not want them treated that way. And because I can't keep up with it. It's just a flat No, like, it's just the No. And that's just what I do. So and I appreciate you having the conversation there. Because then, I mean, the truth is that having a conversation in that space is going to reach a lot more people than having it in a different space. I think

Skiy 1:31:35
you are 100% Correct. Yeah, I agree with you.

Scott Benner 1:31:38
No, see, I'm right. That's all we needed to say.

Well, let's thank Skye for doing this. And I'm tired. It's so much energy. I just, I just got back from vacation. I'm like, alright, I'll try again, right. Hey, let's thank Skye for coming on the show and sharing her story. I'd also like to thank Contour Next One, that lovely, lovely blood sugar meter that you should be checking out at contour next one.com forward slash juice box. And of course, touched by type one.org. Go sign up for the golfing event. There is literally no time left. I mean, it's like two weeks, but hurry.

Well, the community around this podcast is excellent. So we have a couple of things to share. First of all, Skye did initially try moving up the basil, which didn't work in automated mode, I received a message from a listener who said that on the pod five doesn't look at basil after the first 48 hours of the pod, it starts looking I guess at total insulin use, and it makes decisions on its own. So changing the basil after the pods been on doesn't impact the algorithm, I think is what I'm getting out of that. It would of course work in manual mode. I heard from Skye who said she did in fact try moving up the basil but it didn't work. She also figured out that the setting that the the system was correcting above was set at 130. And she moved it down to 110. I have not heard from her since she did that. Although my expectation is that that would make it more aggressive. And I heard from Kenny, who you know from the fox in the loop house episodes, and he said it Kenny Kenny echoes that the system runs primarily off of total daily insulin. So bolusing manually is the only action that you can take. Meaning changing the settings isn't going to matter after the algorithm decides how much insulin you need. Kenny also said that what he's seeing and other people using this algorithm is that the Basal rate that was set for Skye's child might have been was in line with what he's seeing with other kids of the same weight. So we're all learning together. I just wanted to come back and put this back in because it felt like incomplete information without all this. You know, the nature of having a conversation with the person who's learning something is what you got in the last hour. And then putting it out into the world found us more people with more experience. And so I wanted to add it back in here so it wouldn't be missed by anybody. After I stopped speaking, what you'll hear next is what the original end of the podcast was. I'm just going to add this here at the end on the pod is not a sponsor of the episode. But you know, they do buy ads on the show and I get sponsor links. And so if you'd like to learn more about on the pod five or even let Omnipod know you're interested, it's omnipod.com forward slash juice box five, it's the digit five. So the word juice box one word five. omnipod.com forward slash juicebox. Five, I'd appreciate it if you used my link. That's pretty much it. I don't actually get paid. If you click on the link. They buy ads. I don't want to explain this whole thing to you, but they buy ads, the companies buy ads, I don't get money per click. But you know, if the ads perform well, then they come back next year. And you following my links? I mean, I don't have to explain this. Right. You understand how it works. They buy ads, you click links, if you end up following through on the clicks, that's better. Just clicking on it's good. I mean, for me, by me, I mean, the podcast, and that's how advertising works. Is advertising one on one kids. You know, interestingly, T one D exchange that I spoke about earlier, they don't buy ads. That's actually a thing where I get paid every time you complete the survey. All the rest of the spot. I am so tired tonight for some reason I'm so sorry. All the rest that all the rest advertisers, Dear God, all of the other advertisers are like more, you know, they buy ads, I read their ads or I make them up or you must tell by now they can't be written down. Right? They're like falling out of my head as I'm saying them. Not the point. Really. The point is, they buy ads and you know, if you support the sponsors, then you're supporting the show and they come back next year and you get more content. You understand all this works. Anyway. Really, I'm tired. I wonder why that is. I didn't do much today. Oh god. Oh, sorry. Hmm. I apologize. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Weirdest ending ever to a podcast episode. I stand by that. In fact, if there's a weirder one I don't know what it is. You tell me I'm really sleeping. This can be it Kids Can I guess is it you know, once you get over 50 Everything it happens like this it got tired out of nowhere. Hmm Maybe it's just bedtime? Let's not jump to conclusions. Anyway. If you get another episode if that if episode 651 comes out I'm still alive.