#308 Psyco-glycemia

Cute kitten content

Sara's daughter Adelyn was diagnosed with Type 1 diabetes in South Korea while her husband was active duty military. 

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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, everybody, welcome to Episode 308 of the Juicebox Podcast. Today's show is sponsored by the dexcom g six continuous glucose monitor. And by the Omni pod tubeless insulin pump, you can find out more about the Omni pod at my Omni pod.com forward slash juice box. And that that link, you'll be able to order an absolutely free no obligation demonstration pod that will be sent directly to you. If you'd like to hear more about the Dexcom g six continuous glucose monitor, that link is dexcom.com forward slash juice box. All the links are in the show notes at Juicebox podcast.com. Just in case you can't remember them. I have tried to record this opening six times it has not gone right once so maybe me admitting that out loud will help the seventh chance. Sarah is on the show today to tell us about her daughter's diagnosis. The diagnosis happened in South Korea because the family lived there. Because Sarah's husband is active duty military. This is very interesting to hear about the diagnosis as it happened in South Korea, and how the family quickly got back to the United States. There's some twists and turns along the way and even a kitten. But none of that explains why this episode is called psycho glycemia. This weekend, I'm going to be in Atlanta speaking at the jdrf type one nation event. I think it's sold out I'm sorry. But however, I'm very excited to see those of you who are able to get tickets. Next thing I'm doing is in Wisconsin that still has tickets available. So I'll be in Wisconsin on March 26. It's a Thursday evening, I will be speaking from 5pm until 8:30pm. all about being bold within so I'm going to talk all about the tools, how to use them, get people going in a better direction. Hopefully, you go Arden state.com forward slash events to learn more. Please remember that even though most of this story happens in South Korea, 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. or becoming bold with insulin.

Sara 2:23
My name is Sarah Beth, by trial and I am an active duty spouse My husband is in the army and our daughter adilyn. Who is seven has type one diabetes.

Scott Benner 2:41
Okay, you're about 15 other children. Is that correct?

Sara 2:45
No, I have a total of four daughter.

Scott Benner 2:49
Wow. Did So did you have triplets or two sets?

Sara 2:52
No, no, we actually had two canceled appointments.

Unknown Speaker 2:57
is how that happened.

Scott Benner 2:58
You just talking about free time that we're looking at here.

Unknown Speaker 3:03
Within town,

Unknown Speaker 3:04
that's what happened. Well, I have to tell you.

Scott Benner 3:08
I'm gonna join the military immediately if that's how this works. I've never been drawn to service until I realized that it creates a lonely woman that I can visit once.

Unknown Speaker 3:23
Pretty much that is accurate.

Scott Benner 3:25
Well don't tell the kids that make up something about you wanted to have kids and you really loved the first one and couldn't get enough you'll you'll find a way to get through it. You really, I you imagine that when they get much older Sarah and you're like, you know like a wizard and veteran of life and you're like in your 50s like, Why are there four of us? Like how your father wasn't home a lot. They're gonna have this horrified look on their face for a second. And then Thanksgiving dinner. We'll just go on as normal.

Unknown Speaker 3:53
I'm gonna traumatize them. Yeah,

Scott Benner 3:54
they're gonna picture you in that moment still do. And they're just gonna be like, Oh my god, do you think they still do? Oh, yeah. And you're gonna say why do you think it's a stovetop stuffing? I didn't have time for the

Unknown Speaker 4:08
Yeah. I have time for nothing.

Scott Benner 4:09
Well, Sarah, you're a player. I think that's what we've learned right off the bat and we're gonna get going. So you are stationed or your husband is stationed in South Korea when your daughter's diagnosed.

Sara 4:23
That is correct. We were actually all in South Korea, Korea.

Unknown Speaker 4:28
So when you

Sara 4:31
get orders to go to South Korea, you can do one of two things you can go what they call unaccompanied. And go by yourself. And that usually you are you are going to be there for a year. Or you can go accompanied and bring your family and Jeff and I chose to go as a family because he had actually just returned From a nine month rotation in Korea, so he was gone for nine months. He came home for about four months. And then we went back to Korea as a family.

Scott Benner 5:11
Now, sir, that's what he told you. He wanted you to all come along. So you could be together. He really just didn't want a fifth kid and he thought I can't afford five children. If I go to South Korea and come back a year from now, I know where this is going. Yes. You guys. Yes. Bringing bringing you in the children to South Korea was birth control and your anyway, so you said that's when you choose a deployment? It's with your family? Does that mean more time? Or?

Sara 5:41
Yes. So when you take your family, you pretty much committed to two years

Scott Benner 5:47
while you're over there, except moving cost?

Sara 5:50
Yes. So we went and we had spent a year and Jeff was offered another job, that would be a two year commitment. So in order to take that job, he had to actually extend and do a total of three years in Korea, which we were on board for. And we went with that we decided to come home over the summer after the first full year in Korea, just to visit family. And I didn't notice adilyn her symptoms at that time. But it was immediately after we returned to Korea to do that second year, that, you know, she started having all the basic symptoms.

Unknown Speaker 6:45
And they

Sara 6:47
I took her in to a doctor, and it's very hot, very humid in the summer in Korea, in fact, one of our friends when we first moved there, I said this is the hottest you will ever be and the coldest you will ever be at this duty station.

Scott Benner 7:06
Terrific.

Sara 7:07
Yeah. Right. So um, so it was summer, you know, as we were rounding out summer and ready to go back to school, and I noticed she was urinating a lot. She was losing some way to just all of the basic symptoms that you know, typically show up. So I took her into the doctor. And they thought it was just the, you know, the heat, the humidity was warm, she was drinking more, she would produce more urine. She was growing, she was getting taller, but she was losing weight. So they just thought, you know, push some more. Yeah, yeah, put puts put some more fat in her diet, stuff like that. Um, so then we were on the playground. And adilyn fell off the slide and busted her chin open and had to get some stitches. So we had to take her to a local hospital off post there. And they gave her a form of an antibiotic that she had the stitches. They gave her some antibiotics and injection of it. And she broke out in a rash. And this is right before she was diagnosed maybe two weeks. She, we took her in again, she's at this point. Now she's very frail. She's we're seeing bones where, you know, it's it's,

Scott Benner 8:34
Oh, my gosh,

Sara 8:35
it's significant what she's lost. And mashed up

Scott Benner 8:39
you right there at that at that juncture, when you're like looking at ribs and things like that. Are you saying to yourself, like are you and your husband speaking to each other and saying, look, there's something incredibly wrong with her. Oh, what's the love?

Unknown Speaker 8:53
Yes, I actually had brought up

Sara 8:55
diabetes three times at the doctor's and I know it's that I'm not faulting anyone, because I know, it's something that's often overlooked that, you know, we don't get it right the first time. So it just happened that all of these other things were going on at the same time. That That is why she was overlooked. Yeah. So she broke out in the rash. I took her back to the doctor, I said, you know, something's off. She's at this point not feeling well. And they thought it was the antibiotic, which was typically an antibiotic that they don't give to kids or don't mean he prescribed in the US often, because it is reactive. So they thought that that was part of this antibiotic that she had been given. And then they just said they thought that she had, you know, picked up a virus while she was in the hospital.

Scott Benner 9:55
So we kept being excuses for what you could see right in front of you, but that wasn't leading you to end Like in, like, what was the waiting? Like was was their expectation like, Oh, this is getting better because we've done this thing or this will get better because we've taken this step, or were you at that point just staring and thinking, we're not really doing anything and she's getting worse.

Unknown Speaker 10:14
Right. And so as

Sara 10:18
a couple weeks later, we run into Halloween. And you know, every kid is excited about Halloween. She adilyn did not at this point was so she just wasn't herself. She didn't even want to do the, you know, we lived in these towers, and there were three of them side by side. And multiple floors, like 1213 floors, depending on the building. So lots of apartments, tons of candy. And she ended up just doing our building. And then she went back in and laid on the couch. She didn't want to do the additional two buildings with the other girls and it's totally not like her. And so from Halloween on, she pretty much laid on that couch. She was very lethargic. I finally it was a Saturday morning, and I got up and I said to Jeff, I said I feel like I'm watching her die. Something's not right. And so I called the doctor and said she's very lethargic. And that was the key word that threw everybody off. And they were like, well, if she's lethargic, you have to take her to the hospital.

Unknown Speaker 11:26
So

Sara 11:27
at that time, the hospital on Camp Humphreys wasn't completed. So we had to go drive about 20 minutes up to an Air Force Base, and have her seen at that emergency room. So we took her in and they again in the hospital said they thought it was a virus. And finally, you know, I had stayed home with the other three girls and Jeff had scooped adilyn off the couch because she couldn't even at this point, she wasn't even coherent. She wasn't even doing basic functions like walking. So Jeff scooped her up, took her to the hospital drove her there. She was kind of in and out of consciousness and the car is what Jeff had told me. So he took her in and they just thought again, it was this virus. And I happen to for some reason. I got on my phone and I googled type one diabetes symptoms. And I sent Jeff an article. He reviewed it. And then while the doctor came in and was saying, you know, it's a virus, he said to them, can we please test her for diabetes. And they were hesitant. They said, You know, I don't think that's what this is, but we'll do it. And a few minutes. minutes later, they came back in the room and said you were right. She's a diabetic. So that's how her diagnosis happened. We were taken from the hospital. by ambulance, I had swapped, I had a friend come up and watch the girl so I could go to the emergency room to be with adilyn. And Jeff was going to come home and be with the kids. And I wrote in the ambulance up with her to into Seoul to Samsung hospital there. And that's where she was in the hospital for about a week. We were out of that. Er,

Scott Benner 13:23
so I have a number of questions about that first part. Okay. And it'll give you a chance to regroup. It's a it's a well told story. Thank you. How much of a language barrier is there at the hospital? Do you and your husband speak Korean? A little bit?

Sara 13:40
Just I mean, I could speak very I could I could get by at the market is basically what I do. I there is a language barrier. But Koreans are very good at English. They just don't. It's like any culture. You know, if we go to another country, if I go to France, I'm not going to even if I was fluent in French, I'm going to be hesitant to actually use it in conversation. So I think that was the piece because they everybody that I

Unknown Speaker 14:12
worked with.

Unknown Speaker 14:14
They would

Sara 14:16
you're assigned a translator. So I had someone that they would speak in Korean because I mean, that's their language of comfort and they the translator would translate it for me

Scott Benner 14:31
at work

Sara 14:33
no not at well. So at at work for Jeff, is that what you're asking?

Scott Benner 14:38
I just I got lost for a second there because you said you were assigned to translate or just in your regular life or

Unknown Speaker 14:44
no at the hospital

Scott Benner 14:45
in the hospital. I'm sorry. Yeah, there was just that one piece that I missed. So okay, all right. So no, no, please don't be sorry. So there's I'm sure it was my fault. You don't realize that while you're talking I'm also trying to formulate what we're gonna say next. Once in a while I drift away and I'm Like, Oh, you know what I'm going to ask about. And then I started thinking about this South Korean zombie movie that I really liked. And I was like, I wonder how I can work this into the conversation, which is meaningless. And then I missed a key key thing that you said there. Anyway, I apologize. So there's a, there's a translator at the hospital. And that though, that makes total sense, even though you feel like the hospital staff could have probably spoken to you.

Sara 15:23
They actually, there was a few moments where, you know, you're assigned a translator, and they come into the room when you have like education classes, or your team of doctors comes in, and there would be a few moments where maybe she was running behind. And they would speak to me in English. But I think they just weren't comfortable.

Scott Benner 15:41
Yeah, one thing either I would have met.

Unknown Speaker 15:43
Yeah,

Sara 15:44
yeah. So it was, they could do it. And they were very good at it. They're the team that I had. Would you know, after the meeting, they would say thank you, you know, for being so good about my English, they would always think that their English was poor. And it was, I mean, it was phenomenal. In my opinion. They would did very well, I could understand everything.

Scott Benner 16:08
I have to say, you know, in your note, you say that her eidolons Awan see at the time she was diagnosed with 17%. I'm fairly comfortable saying if you don't Google that article and push your husband, she probably doesn't make it if they send her out of that hospital again, telling her that it's that it's something else, especially with your description of her.

Sara 16:28
Yes, she I don't think she would have made it either. I really do think that it was something I don't know what it was about that moment where I just happen to pick up my phone and say, I really think we're missing something. And I asked about this. And it just was something that was you know, I remember we went on a trip around right before she was diagnosed, I took her to Everland which is kind of like a Korean Disney Land. And it was maybe maybe 40 minutes to an hour trip and adilyn we had to stop twice there and twice on the way home for her to use the restroom. She just couldn't. I mean, in 40 minutes, she had to go twice. It was just something he was frequently urinating. It was not something with off, you know,

Scott Benner 17:17
and not drinking that much.

Sara 17:19
No, I mean, he was he was definitely chugging water. But it was it was, you know it. There was just so many things that were off it and she had all of those key symptoms. And then when we started I mean, I could see her full pelvis by the time that we took her in. So it was like she is this is not right. This is not healthy. Something's wrong. Do you have a feeling for how much weight she lost during the time it took you to kind of figure this all out? When she was taken to Samsung. I think they weighed her in and she was under 40 pounds. She was about 3837 meaty. Right now she's well over 50. So she it was it was a lot of weight.

Scott Benner 18:01
Yeah. And you said and she was getting taller. So it probably even looked.

Sara 18:06
Yeah, it was not. It was not good. I mean, I even had it was to the point that I was taking pictures of her just to have it, you know? So I could compare how much Oh, I see. Yeah, of course, she was losing just the amount of bone that was coming through.

Scott Benner 18:23
I remember Arden gaining about two pounds in the first 24 hours. She was on insulin. Yeah, because she was in that scenario. So she's much younger. But you know, she only weighed 19 pounds prior to us. figuring it out. By the time we figured out she was like 17. And then she put the two pounds like as soon as it's like he injected the insulin in her and she just you know, the weight went back on her which was this really magical. Wow. But yeah, she looked like I said on the podcast recently, like our Arden looked like a, like a runway model with a heroin problem. Like she was really, he had gotten to that like gone. thing. And it is funny because as you were describing, and I thought I did all the same things you did, you're like, well, there's reasons for this. Like everything that happened, you were like, Oh, I can see why this would happen. Instead of just thinking, you know, this isn't normal. And let's go to a hospital and banging on the door until someone fixes it. Like, why would we leave? You know what I mean? Like why would I ever walk away until there was a actual answer found? But it's just the process. It's how it goes and you know, it really is. It shows you how what happens next to most people happens right and you're gonna talk about it after a while but like you know, you doctors don't tell you everything you go home It doesn't seem right. And you still just swallow. You know what I mean? You just swallow it you just like okay, sure, you know, I'll inject the insulin and then eat right away and now I see my blood sugar spike right up. Well, they said it's okay. I saw someone online say the other day like, my blood sugar goes to like 280 but then it comes back and the doctor says that's what it's supposed The dude and the right and the person saying, I don't feel like that's right. But how do I trust myself? You know what I mean? Like and how do you trust yourself during the diagnosis when you're like, hey, this really seems like diabetes like no, no, that's a virus. Yeah, you know, you just go Okay, fine, Iris. Thanks. And can you imagine and I don't want you to, but I guess you know, for the sake of the conversation. Imagine had you not followed your instincts there and your daughter passed away?

Unknown Speaker 20:29
Yeah. Although I think about it often.

Scott Benner 20:31
Yeah, absolutely. Your husband owes you huge. And seriously, I'm seriously one of the kids you're way ahead in the marriage right now. Whether you realize that you could probably screw like three major things up. I don't even think he could say anything. Look at it. I'm keeping score over here. So that's how I know but yeah, you're you're way ahead. Just so you know, you could probably stop cleaning. I'm gonna say for six months. You know if the cleaning something you do you want to cheat once I think you get away with it. What do you think of that?

Unknown Speaker 21:03
I like it.

Scott Benner 21:04
You rollback me like a Jeff. Remember the time I save the kid? We're gonna let this go.

Sara 21:09
probably throw that out every once in a while.

Scott Benner 21:13
could at least get you out of like some mundane task you don't want to do right? Like, why doesn't somebody who didn't save adilyn come over here and pick up these toys. Right. So I would roll? I really wouldn't. But it seems like so much fun to think about it that way to me, my brain gets a little off track. I I don't want to apologize for it, because I like how I am. But I was online the other day and someone said something to me. And I responded in a way that I thought was fun. And then someone came on and said like, Man, you're not right. And I was like No, it's funny, like, don't you? And then I looked at I was like yeah, I don't see anyone else answer things like this like this. There is something wrong with me. But in a delightful way. So who cares? Right? All right. Anyway, you. So you're at the Samsung Medical Center. All this is going on? How long? Did they keep you there? And by the way, is everything named Samsung in Korea. Okay, let's go to my omnipod.com forward slash juice box and find out what we see my Omni pod.com forward slash juice box? Well, I see that I can request a free experience kit at that very web address. So if you're using MDI, and you're thinking about pumping, or if you have a pump, and you're dreaming about what it might be like to be tubeless Oh, did you not know, the Omni pod has no tubing that you won't be connected to a wired controller something that you'll have to clip to your belt or your bra or hiding your pants? or disconnect disconnected to take a shower or go swimming or to play sports? Wait a minute, you didn't know that. Now you do. The next step is to get a demo sent to your house a free pot experience kit. They're just going to send it to you. Now don't worry, it's not functioning, right. It's a non functioning, but you can try it on and wear it. And I think you very well might learn what I did when I wore my free pot experience. Get it after it's on for a few minutes. You just don't notice it's there anymore. And next thing you know, you're going about your life. So whether or not you're a person living with Type One Diabetes, with a parent or caregiver of someone who does, you owe it to yourself to check out the Omni pod. It's my Omni pod.com forward slash juice box get the absolutely free pod experience kit sent to your house, there's no obligation, they're not gonna hound you if you try to just check it out. can't hurt. The Omni pod is one half of the irreplaceable technology that my daughter uses. You know what the other half is. In case you couldn't guess it was the Dexcom g six continuous glucose monitor. I'm going to kind of keep going here with my URL trend URL, the URL URL dexcom.com forward slash juicebox. Now when you get there, you're going to find out everything you need to know about the Dexcom g six continuous glucose monitor. I'll tell you a little bit about it. Zero finger sticks, glucose readings that are right on your smart device Android or Apple customizable alerts and alarms the ability to share your data with someone else that could mean your sister in Poughkeepsie, or coming your child across the street at a playdate. But someone with Type One Diabetes, who's wearing a Dexcom g six can share their data with a loved one or friend. I'm not even gonna edit that out. That's my daughter's right there. We have a customized alarm set at 120 means my daughter's blood sugar has just drifted above 120. We're going to take care of that right now with some insulin that will avoid a high blood sugar that later will require a ton of insulin that will probably cause a low blood sugar later. Now your results may vary. Right, these are hours. But the truth is, knowing the speed and direction of your blood sugar is at the core of how you make good decisions with insulin dexcom.com forward slash juice box or the links in your show notes, or Juicebox podcast.com. I cannot believe that thing beat right then, and I wove it into the ad. I'm a genius. Alright, let's get back to the show.

Sara 25:38
Yeah, well, and I shouldn't say everything. But Samsung has a very big influence. I mean, they have everything. Air Conditioners like anything. Samsung. So

Scott Benner 25:50
I love you. I'm looking at one right now to be perfect.

Sara 25:53
Yeah, so we were at Samsung for about a week.

Scott Benner 26:00
Yeah, I think it was just maybe just shy of a week. Do you think that's because of how far along she was? Or also because they don't see type one that often.

Sara 26:10
So from my understanding, they don't see type one that often. I don't know if it's genetics. I don't know. I again, this is something that I was told. I'm not sure how accurate that statement is. But I don't think that it's as predominant as it is in the US. So, you know, they kind of in the first week, it was

Unknown Speaker 26:34
it was a very

Sara 26:37
strong learning curve.

Unknown Speaker 26:41
they

Sara 26:42
first started talking about you know, I had tons of questions, obviously. And you know, you've even mentioned it on a few of the podcasts where you're almost in like a haze. So everything's being thrown at you all this information, then you have the language barrier, as well and the translator and it's, I felt like I was drowning, like I felt like I was underwater. And then the translator would speak and my head would pop up and I could kind of understand that I go back underwater while they were speaking. So it was it was very, it was hard for a while. But I finally think I got a grasp. And I felt comfortable going home, I guess. But while we were at the hospital, the doctor that I had seen at Humphreys before we had left. She was a pediatrician there. She actually personally called me. Now I don't know how she found out that we were at the hospital. I'm not sure if the emergency room reported that we you know, this was all going on. But she personally called me while we were at Samsung, and she talked to me for maybe an hour and said, I really feel like you should pursue going back to the States. And so it was with her it was really hurt because I hadn't even thought that far ahead at that point. You know, I was still trying to understand injections and finger pokes and all of that, you know basic stuff. Yeah. We were still trying to figure out her Tarceva and you know if she was on Nova rapid at that time, and so like all of those ratios and everything we were there was still a lot going on. So

it wasn't until I got back home that

she asked to see me in her office with adalind. She wanted an immediate follow up. And that's where all of the extra work. We're going back to the States. But I'm getting ahead of myself. I guess what I meant to say is while we were in the hospital, the the staff started talking about pumps, insulin pumps, CGM, things like that. And I know that

Unknown Speaker 29:06
the specs

Sara 29:08
on the equipment in Korea don't match us specs.

Unknown Speaker 29:12
So

Sara 29:14
it was also I think, an insurance issue. Maybe I'm not exactly sure. Because in the States, try care pays for the the supplies, but over there, everything is out of pocket. So I remember they showed me a CGM. That was huge. It looked like a an old pager almost. And they were like, Well, you could this is, you know, kind of explaining it to me and how it worked and we could get it.

Unknown Speaker 29:42
But it was

Sara 29:45
the day following my phone call with a pediatrician. I said, I don't know if we're going back to the states or not. And so they kind of said, Well, I would advise that you, you know, see what's going to happen and then come back if you're going To stay and get the the equipment versus buying it because they were the ones that told me it doesn't meet us standard so it won't operate there.

Scott Benner 30:09
And so when you're in the hospital still, and you described kind of drifting away, do you recall? Did you just go to a numb place? Where were you? overwhelmed? it? Was it like being in math class and not understanding? Was it like, were you? Were you daydreaming about this not happening? Were you thinking about worse things? Do you remember what happens in that space? You may not.

Sara 30:38
I do remember. Just I, I just kept thinking, Why her? Why adilyn? Why did this happen to us? So it was more of a you know, like, I really struggled with it. I remember I cried so much that adilyn I remember asking the nurse the first day that she came in and gave her an injection before she ate breakfast because they had her fast. So that they could, I guess, you know, do some testing, monitor her stuff like that. So by the next day, after we had, we went left to the ER went to Samsung that whole entire time overnight, they were fasting her and she just kept waking up and she was crying. She was so hungry. Finally, they sedated her so that they could give her some potassium. Because you know, that burns going in. So they tried to give it to her before we left the ER, but it just she was screaming in pain. So they sedated her and they gave her the potassium. And that helped her get through the night. But by the time the next morning came, she was starving. So they came in to give her her insulin. And I remember I just looked at the nurse and I was crying. And I said, so I have to do this to her for the rest of her life. And Adam and Adam looked at me and she was like, Mom, why are you crying? You know, she just I think she had seen me cry so much in that short time. That it was like, What is wrong with you?

Scott Benner 32:06
Like this lady? Oh, yeah, I need someone here and you got to really help me. I'm six and I'm hungry. And none of these people speak English. And I really would love someone here was on Alan's team, you know, they midnight here. I think it's a listen, I mean, it's an adage of parenting, right? Here's a line between how much do you show them? And how much do you Buck up and do what you're supposed to do. And I'm a fan of somewhere in the middle. I like my kids to know, I'm a real person. Without them feeling the stress and anxiety of the things that I worry about, you know, I think about, um, you know, bills or, or you know, how you're going to pay for college, that kind of stuff. And I want my son, for instance, to know that this, you know, the college he's going to, it's not easy for us to pay for. And at the same time, I don't want him getting up every morning and thinking, Oh, I better not screw this up. Because my parents are paying a lot of money. I want him somewhere in the middle. You know, I like that your daughter sees that you care about her. But you got to stop short of when she thinks Oh God, I gotta grab one of these other adults and see if they'll say this woman just lost it. She's probably, you know, I mean, my dad has gotten her pregnant so many times that he's probably tired, you know, and, and what are we gonna do? I listen, I cried during the, during the first kind of like, lesson from a nurse about counting carbs, and then figuring out how much insulin to use during the ratio, like I just fell apart. And my wife was like, Cognizant enough to send the nurse out of the room just to give him a minute. He appears not to understand seventh grade math, so let's get him out. You know, like, and, and I'm gonna need this here, because he's the guy that stays with the kids. You know, so she cleared the room out. She's like, what's wrong? I'm like, I'm gonna kill her. Like, I'm gonna make a mistake with this math and I'm just gonna kill her. And then what am I gonna do? How am I gonna turn to you and say, hey, look what I did. You know, we met each other when we were kids. And we have these two children in this house and everything was going great. And then she got diabetes, and then fast forward to me killing her. You know, like, I really, you don't keep you're a nice person. You don't keep score in your head. But I know for a fact if I kill one of my kids, my wife's bailing on me. Yeah, you know, aside of the part where I would really like Arden to stay alive. I you know, but I've always had that thought before diabetes, like even driving in the car with my son when he was little. I thought I cannot have an accident hurt this kid. She's just a girl. I married like, like, you know what I mean? Like when it comes down to picking if I kill him, she's gonna leave. Like, why would she not and I really To be honest, she pays a lot of the bills. So I was like, it really I only kept my son alive to get the electric bill paid is what I'm saying. That was my was my key focus of being a stay at home parent. I wish that you know,

Sara 34:50
anyway, I do remember leaving the hospital I basically I wagered with these with the staff like You know, they were first they were going to release us the night before. And traffic in to Seoul is horrific, like highway one. It's I think six lanes per side, maybe eight. I can't remember. But, you know, it's bumper to bumper traffic and especially rush hour. So I'm thinking, I'm going to have this kid in the car. And how do I feed her? How do I give her an injection on the way home? So I just basically said, Can I leave? Saturday? Morning?

Scott Benner 35:36
There's no one outside? Well, you know, I looked while we were talking the population of South Korea's 51 million people. Most of them are in Seoul. And per Emperor perspective, there are 320 9 million people in the US and South Korea, South Korea is you know, not seven times, you know, larger than the US it's, there's there's a lot of people jammed into a very tiny space. Mm hmm. Did you ever listen to the podcast while you were there?

Unknown Speaker 36:05
I did not actually.

Scott Benner 36:08
So you thought I was meeting the people who downloaded it from South Korea, but apparently Yeah, I'm sure I

Sara 36:14
know. But at the time, I didn't have a diabetic while we were over there. I mean, it was, by the time adilyn was diagnosed November 3, we left country, December 17. That is something that

does not typically happen.

Unknown Speaker 36:31
And that was

Sara 36:33
a lot to do with our doctor being on board. Jeff's chain of command being very supportive. And they would check on things for us. I mean, it was, we were getting pushed through the system very quickly, which is this is not typical.

Scott Benner 36:51
So when you get home, I'm assuming you you don't have a home in the US at that point, did you? You're not it's not like yours a house at home somewhere that you're renting or family members living you go to another base, is that correct? Um,

Sara 37:06
so before we left, they, Jeff was getting in contact with his branch manager. And they basically give you an assignment before you leave, you have to have a place to go, you know, where you're headed, and they were in you, when a child or anyone I guess I shouldn't just say a child, but when someone in your family, if your active duty service member

Unknown Speaker 37:31
has a some form

Sara 37:34
of disablement or disability or, you know, disease, you, you qualify for what's called efmp, which is an exceptional family member program. So adilyn is now an efmp qualified member of our family and so that basically, it's an identifier on Jeff's paper paperwork that says, you know, we can, because of that, we can only go to certain places now.

Unknown Speaker 38:09
So,

Sara 38:11
they, they basically give you options that has Cara for her, okay. So they gave him a list. And I had done a little bit of research. Before I had left. My good friend Kathy was helping me kind of see where we possibilities of places we could go and where care was. And I had in my mind that I wanted to come back to Fort Bragg. We were here before we left for Korea. And they offered us a couple of places. And I said to Jeff, you know, I would really like to get back to Fort Bragg because I had already I have a support system here. I had left friends I was familiar with the area. So I knew going into this newly diagnosed that I needed that. So he got with his branch manager and asked if there was anything available here, which is not like my husband at all. We usually go wherever the job is we're not very selective

Unknown Speaker 39:11
with that, so

Sara 39:14
he he basically asked, and they they assigned him here. So that's how we ended up back here. But when we left Korea, Jeff and I are both from Michigan so we had stored like his truck, things like that at our parents homes in Michigan. So we took a direct flight out of Seoul into Detroit picked up our belongings and then headed down to North Carolina.

Scott Benner 39:42
Wow, that's a lot all while not really understanding diabetes at this point and trying to correct Yeah, together. Yeah, I have a lot of a lot of feeling for you because I was not good at even getting in the car and going to like the grocery store without pre planning for like two hours before I would take art now. I'd be like getting your blood sugar in the Exactly. place where I thought it'll stay here we can get across, right? You don't mean like, if you would have told me to get in the car in in Detroit and drive to North Carolina, then like maybe in a couple of years,

Sara 40:11
I think you know, the car trip down with a lot easier than the 16 hour plane ride back. That was terrifying.

Scott Benner 40:19
This is a plane make you feel trapped. Like if something happens, we're stuck on

Sara 40:23
Oh, I was so worried. I remember when we went to Korea that someone on the plane had some sort of medical emergency and they, you know, got on the intercom and asked for any medical providers that they could come up to whatever row seat, whatever, you know. And so I just I kept thinking, what if that happens to us? Yeah, I have to be very aware of where my child is what row we're in what seat? We're in.

Scott Benner 40:48
You overthought all of that? Yeah. Because you really did overthink all because now you know, I mean, you would fly now and it wouldn't be such a big deal. Right?

Unknown Speaker 40:55
Right.

Scott Benner 40:55
Absolutely. Yeah. Back then, without the tools, it really Oh,

Sara 40:58
yeah. And I mean, I had like a year supply of insulin. I really did. I my pediatrician, before we left at Humphreys told me we you know, we had a follow up with Samsung about a month after diagnosis. So it was beginning of December. They wanted to see her back. So I think it maybe was like the first week of December, we were up there. And before we went the pediatrician said, make sure that they give you a three month supply of insulin before you get on the plane. Because you know, there will be a gap between your care that you know, stablishing a doctor or things like that. So I went and I asked for three months supply, but they handed me you know, the pens come in those boxes where there's multiple pins in a box, and they handed me like three or four boxes. And so I had tons of insulin, that I'm walking on a plane, I'm thinking how am I going to keep this cold? You know what happened, Willie, let me on the plane with this. I have all these needles in my bag. You know, it was just,

Unknown Speaker 42:01
it was a lot

Scott Benner 42:04
going on? Not a lot of questions. Yeah. I hear you. I really do. I I so you make it home. There's actually great episodes in the podcast that people who are like really world travelers with diabetes, and they talk about how, with a tiny bit of pre planning and just understanding things a little bit how easy it really is. It's not

Sara 42:23
much yeah. Now I could get back on the plane and I would feel completely comfortable.

Scott Benner 42:28
Yeah, yeah, no, it's, uh, I know how to. I think I could go anywhere at this point. Seriously, like, but But back then. Like I said, I couldn't leave the house. So she you get home in? Right? Well, even that I didn't realize just now that sucks. Like you. You had to come home like right before Christmas. So do you celebrate your and so you're like, isn't that interesting? The leap. I made them like you're in the army and you're from Michigan. You're Christian. And so I wish I could. I wish you could have watched the synopsis make connections in my head. I was like, Oh, it's comfortable to say. And now that I said out loud, it's less comfortable. But that is how my brain works. In case you're wondering, I just let go very quickly push it for kids. No. So it just like not that quick succession like that. Anyway. So you're rolling in stateside just a couple of days before Christmas. Now I have a tiny bit of experience, but this rush, because one year we build a house. And we bought this tiny little rancher and it was junk. And the plan was always to knock it over and started, you know, because the land was what we wanted. And rd gets diagnosed, you know, right is we're thinking of like doing the work. So no lie. We had a construction person. They're moving things around, like walls and support inside of our home to facilitate the next step of the process. Okay, and one of the things we had done to get ready for the construction was we had the front stairs to our house and the sidewalk completely taken out. And the dorm moved to another position. And then Arden was diagnosed for years. My children had to jump out the front door to go to school. Arden was diagnosed, and then everything stopped while diabetes, you know. So anyway, we finally get our house built many, many years later, Arden was diagnosed in 2006. And we built our house in 2012. So for six years, I was the person in town that didn't have a sidewalk out front door didn't line up with any sort of pathway and the pizza guy would just like roll through the front yard, you know, I mean, like it was all it was like it was horrible. And we built this house, but we couldn't afford to build it and to relocate. So it's a long story but we had gotten the money all the sudden out of nowhere for the construction that that money did not matter. clewd relocation, and we were screwed, we were going to have to skip it and not do it. I said to my wife on the Kelly, there is no way we are not building this house. And so one day I called her at work. And I said, this weekend, we're going to go and buy a huge travel trailer and park it in the backyard. And we're going to live in it during the construction because we can put $1,000 down on it, pay some small payment a month on it and sell it right away when we're finished with it. And there's a whole story of what it's like to live in a trailer with a dog and two children and diabetes for six months. But he didn't do it. Okay, we did it. Yeah. Except the construction that of course, you know, I know now always takes longer than you expect. And so we are the last six weeks in that trailer, it's freezing outside, and those things are not made for the weather. We have like electric heaters going like as a fire hazard. I'm sure you know, we'd get up in the morning, I could hear my wife getting that tiny little shower and she was like, ah, like in and out like two seconds or whatever is free everything right? But we'll move back into the house about 10 days before Christmas. And rush to try to make a real Christmas was like horrible. And I wonder if that happened to you? Did you get home like because I'm you're you seem like a really good mom, like did you get home get back into North Carolina? What's your next thought? I have to make a Christmas for these people like

Sara 46:23
so it's funny that you bring this up because I had planned, you know some of the girls gifts and things like that. And I actually ended up returning them all. And I started ordering things online and sending them to my mother in law's house. My my parents, what they call snowbirds. So they leave Michigan if they stay in Michigan for six months and live in Florida for six months, so they had already headed down to Florida. We actually have a travel trailer that we store at their house. So we had to go over there and pick up the travel trailer. But we ended up staying at Jeff's parents house and doing Christmas there. So she already had it set up. And you know, I'm blessed with an amazing mother in law. And so she did like she had, I think it sparked happiness that we were coming back. And she was going to have Christmas with all of us, you know, so it was a big thing. All of us were at my mother in law's for Christmas. So myself, Jeff, the girls, his sister Jamie, her husband, their children. So it was a big thing we did. They always have a family Christmas party. So we had to go to that. So it wasn't it was very felt very normal. But I was able to step into that. Now if I had to

Scott Benner 47:47
start from you know,

Sara 47:48
yeah, it would have been completely different.

Scott Benner 47:51
Yeah, well, she owes you two. I mean, four kids get what I mean, like at some point, she must even call Jeff at some point. But like, he cut that girl a break. Like, you know, you just you know, you kept plugging away. No, there's no pun in there at all. And you you know, I think she owes you is what I'm saying. Like seriously for kids. She's gonna listen to this. At some point, this woman really came through for you with the grandchild. Yeah,

Unknown Speaker 48:11
I think I think

Sara 48:12
she knew that it was something on my mind that it was I was trying to still make it normal. So she just she was willing to. And Carol goes overboard at Christmas. There's no, there's no way around it. So it was it was nice that she was already set up. And we were good. We were taken care of

Scott Benner 48:31
right. So eventually, then you end up back at Bragg where you're at now. Right? You're speaking to me from from there. And you I'm assuming settle into a life of managing diabetes. And how did you find it to be in the beginning?

Sara 48:46
So coming back, we have this funny little story that we came back to Fort Bragg again, because we came right back to the neighborhood we lived in before. And in fact, we rented a home and our neighbors to that home. Were actually at the time trying to sell the house we're in right now. And so they weren't the movement cycle had already come and gone and it was sitting empty. So I contacted them because we're friends and I said, No, Hannah, would you be willing to rent the home to us? And because she knew us. She was like Absolutely. Anything I can do to help you guys because I mean, again, we were friends. She understood what was going on. We were communicating from Korea at that point. Once we found out we were coming back to Fort Bragg so I we actually are living in the house next door to the house we rented before. So when we moved back, I would have to like you know, the girls were in a very family friendly community and lots of children, lots of outside play. So when they were like riding their bikes, for example, and the kids had used the bathroom they would like Jump off their bikes and run to the old house and Jeff and I would have to sit outside for like the first month and scream at them not.

Unknown Speaker 50:09
And they,

Sara 50:10
they would have to like it, the light bulb will go off and they'd be like, Oh, that's right. We live in this house now, and would come in. But we also with another reason why we chose to come back is my best friend actually lives across the street. And another peaceful piece to this is that they're starting to hear her cat right now. I'm not sure why she's yelling.

Scott Benner 50:35
But I genuinely thought one of your children had fallen in the note

Unknown Speaker 50:40
that the cat actually

Sara 50:42
Yes, it's adalind cat. We had to get a cat that was at ease. Like, you know, the moment of, Hey, I have diabetes. You're gonna sympathize with me and get me a cat, which I'm allergic to. She was able to pull that

Scott Benner 50:55
off at six.

Sara 50:56
Oh, yeah. Oh, yeah. I mean, while still in the hospital, Jeff came home with a cat. The kid

Scott Benner 51:02
right? I need a cat when she saw you guys crying?

Unknown Speaker 51:06
Uh, yeah, pretty much. how that went down. So yeah,

Scott Benner 51:10
anyone listening? 810 20 years from now don't marry this girl. She's got a plan. It I mean, she's like, Look, they look sad. She got her list. She's like, what's at the top of my six year old list?

Unknown Speaker 51:20
Ooh, Cat, cat.

Scott Benner 51:22
Mom's logic. Whatever.

Unknown Speaker 51:24
Doesn't matter.

Scott Benner 51:26
Wait a minute. Did you fly from Korea with a cat? You didn't write?

Sara 51:28
Oh, yes, I did. Also, yes. Oh, yeah. a kitten. And I mean, she was just a kitten. She would just, you know, was old enough to get her rabies shot and things like that. I mean, she screeched the entire way. We were those people. It was awful.

Scott Benner 51:45
Second, what's Jeff job in the military? Is he a test dummy? How did he come through with that? And

Sara 51:51
Jeff is an aviation officer. So he he flies

Scott Benner 51:56
sounds like he's got a heart made out of putting that kid said cat and he ran right? Oh, yeah. Well, it was more me. She had asked for it. And there was this like adoption. They it just all lined up the stars were all aligned. And we ended up with this cat. I put you back in that scenario right now the person you are today that kid goes I want a cat. You look right at it and go, I don't care. And then that's the next. Right

Sara 52:18
now. She can't pull that on me anymore. It was just that weak

Scott Benner 52:20
moment. She blew all of her currency on that cat. She doesn't realize cuz she's so little. But that was the overreach there. She doesn't know. Yeah, well, whatever. Good. Now she can live I swear I wish you guys could all like, my default is no. You like if my children are like, Hey, Dad, the house is on fire. Should we go outside to go? No. And then we think about it. I say everything I started. No. And if you get me to Yes, huge win for you. I would never my son said he was in school the other day. And some kid was like, Hey, we should just go do this. And my my kids, like my dad won't pay for that. And and he's like, just you know, you have a card. Like, let's just do it. Like he's got like his, you know, his bank card. And my son was like, Oh my god, no. Like, he'll drive up here and take me out of school over over $50 you have no idea. Like, I can't do that. And I was like, proud. I was like, that's right. When Arden goes clothes shopping, she picks out three outfits. And as she's heading to the register, she stops and puts one back. Am I Oh, my wife goes. I feel bad. Like you've made her feel bad about money. I'm like, I see that exactly. The opposite is you but okay. Yeah, I see that as shit her being careful with what she's spending anyway. Yeah, your kid wouldn't I got a cat. If she was my daughter. I would have actually laughed at her. I would have like pulled people into the room but like, Hey, guys, Everybody listen to this story. My daughter thinks just because she has diabetes. Oh my God, that's delightful. You're a pushover. I like you. Okay. So we're home. And and and we you know,

Sara 53:53
we moved in next door to or across the street from my best friend who they actually have their nephew is a type one diabetic. So it was it was it was a relief for me because they were aware already how to you know, manage Addy in a sense, you know that they they understood it most people don't understand and you know, on the on that on the level that you need them to.

So yeah, it was it was extremely

it wasn't as difficult as what I thought it was going to be.

Scott Benner 54:28
And and you using a meter or pens or palm the CGM. What did you settle into when you got?

Sara 54:34
Yeah, so I had, she was using a meter. She's getting finger pokes. And I mean, it was to the point that I was so nervous with everything that was going on. I mean, just in that one month time span of, you know, we're in another country. We're getting on a plane. We're taking this huge car trip like we're moving to your house. So it felt like I was I was testing her probably every two hours, her poor little fingertips were just right.

Unknown Speaker 54:59
All.

Sara 55:01
By the time that we ended up getting a CGM, we came to North Carolina and on pote, you usually go on post to be seen for your health care, but they were over strength. So they refer you off post when you can see a medical provider that takes accepts try care. So I found a really reputable pediatrician, and then had to go in to get a referral for a pediatric endocrinologist. So they, at first, thankfully, our pediatrician, she, her best friend's daughter is a type one. So she's also aware at this point. So that was super helpful. And she had come to, you know, in the first meeting with her, and, you know, evaluating adilyn was saying, you know, I think you should go to UNC, which we had gone to UNC before, when we were stationed here for my second daughter, Kenzie needed to go to some specialty care up there. And I knew it was quite a drive, you know, about an hour, hour and a half to the main campus. So I you know, at this point, now, I'm like, Well, I don't want to be that far away from the doctor. So I said to her, you know, like I said, earlier, I had done minimal research on whether there was care here for add on or not. So I knew that there was a doctor here in the immediate, like Fayetteville area. So I said, Can I see the doctor at Cape Fear? And she, you know, was kind of like, yeah, sure, you know, but I, she did say, I want you to know, that if anything happens to adilyn, and you have to take her to the hospital, I want you to go direct to UNC, if possible. So I said, Okay, and flash forward, I go to adalind first visit here at Cape Fear for the endocrinologist and the doctor, the doctor was fine. It's just she's the only doctor in our area. She's the only pediatric endocrinologist for all of the

Unknown Speaker 57:20
Fayetteville area

Scott Benner 57:22
kids in every person that needs her. Yeah.

Sara 57:24
So I mean, she was I remember the first visit, she was very, very helpful in getting us a CGM. She said, you need this. And, you know, I come in and saying, Can I have it? I, you know, I'm finger poking her every two hours, because I'm uncomfortable. And she said, you know, you need it. So she got us that very quickly, but I do remember, you know, obviously, it's all new and uncomfortable. And, you know, I didn't understand it. And she said, if there's a video to how to put it on how to, you can watch the video, if you have any problems. She kind of I don't want to paint her in a poor light. But she said, I'm just too busy. You're not going to be able to come in here and see me if you have any problems with it. I can't make time for that.

Scott Benner 58:12
Figure it out.

Sara 58:13
And yeah, and so I I just remember standing there like, okay, and she had adalind ha once he had by the time from diagnosis, she was 17%. The month later, when we went back at the follow up in Korea, she was like nine something. And then we got back to Fort Bragg Sorry, I'm like losing my mind. We got back to Fort Bragg and that first visit her ha once he was like, 8% Okay. And so she was she was declining, and that was great. But I had in my mind, you know, we were Jeff. Jeff is very research based. So he was watching some like, like YouTube channel on diabetes, and like how they were doing it. And, you know, so I was aware of what a

quote unquote good ha one C was.

And I'm a perfectionist, so I was like, we're gonna get her there. I want her to be in a really good range. So I remember I walked into that first appointment, and I was expecting everything to get changed. I just thought

Scott Benner 59:21
I knew what that's not five and a half. So let's make some adjustments now.

Sara 59:26
Right and and I was saying, you know, there were so many times where I mean, I was finger poking her so I didn't get the the graphs. I didn't get the arrows, the number like you get with her Dexcom now, but I knew well enough that I was like, Why is she going up to 300 every time she eats and you're telling me that you want her in this tighter range. And, you know, when we left Korea to be on the safe side, they told me don't ever let her you know go under. I can't remember what number they said. But they were basically telling me the 200 Mark was it Good target, right keeper around 150 200. That's great. And then when I went into this appointment, I just knew something was off. Because, again, we're already my husband's watching all this stuff on how to figure out addys disease. And I'm seeing all this, you know, all these other success stories, and I'm like, Okay, so this isn't right, something's off. And I expected her to help me change it. But she kind of just said, You're doing great. I'm not changing anything. See you in three months. And I remember I walked out and I was like, this doesn't feel right. Something is you know, I know she can do better. And I am still not comfortable. So we get to CGM, and I ended up. I was doing I was on Facebook or something. I was on a page. And your podcast was suggested. And so I just decided, you know, I'd never listened to podcasts before. So I was like, Alright, I'll give it a whirl. And so listening to some of the stories that you had featured on the podcast, it's where you started talking about Pre-Bolus. I had never even been told to Pre-Bolus just that, in and of itself was brought down catalanes stuff I kept could keep her in a better range. She wasn't spiking to 300 with her food. You know, it was I was told give her the insulin Letteri. And then she'll come back down, like you had mentioned earlier. And I knew it wasn't right. So I finally called our pediatrician back and said, Hey, can you can I go to UNC? I'll, I'll do that. I'm going to I need to make a change. I don't, this isn't a good fit for us.

Scott Benner 1:01:42
So worth the ride.

Sara 1:01:44
Right. And so she gave us the referral. And now we're at UNC. And between the information I've received from the podcast, and the doctor, the team of doctors, she's doing really, really well.

Scott Benner 1:01:57
Great. What is well, where were you? Where have you gotten to? Are you? Okay?

Sara 1:02:02
Um, so her next appointment is in October 2, but the last appointment her a one C was 5.7.

Unknown Speaker 1:02:11
License. You did it? Yeah, I did it. Yeah.

Sara 1:02:14
I mean, it. I don't know if I could do it without the CGM. And I don't know if I could do it if I would have stayed where I was. and accepted. Okay, I'm not doing anything wrong. I don't. We're not gonna make any changes. Everything's great. Yeah.

Scott Benner 1:02:27
Yeah. They said it was okay. So it's okay. You just have to trust yourself at some point. I mean, honestly, you retold you know, you basically told me a story about seeing how sick your daughter was, and pushing through and getting them to test her for diabetes. And then you saw that what you thought, you know, what they were telling you was right about her care. didn't look right, you push through. And, you know, that worked out as well. So I say trust your gut. I say it all the time. Actually. It's a big part of this. Is that, you know, is that idea that when you see something that doesn't make sense, you should say something you should do something can't just stand still and go. This doesn't seem right. I hope this doesn't hit me. Oh, look, it hit me. I can't believe that, you know, like, it's just yeah, gotta move, you got to do something. And you did it. That's really cool. I mean, I'm really, it's very encouraging for me to hear you say that. Because, you know, I get everyone's notes and letters, and, you know, messages and people are in different variations of this process. And at any point along the line, if you give up you'll get stuck right where you are, and then eventually you'll drift backwards. So you have to push through till you get to the point where it's just like, it's easy now. And and, of course, I don't mean easy, like, easy. I just mean, like, it's, it's old hat like you do this thing and you get the blood sugar you expect. Like that, that kind of stuff. And when it goes wrong, you know, troubleshoot it, and and you figure it out.

Sara 1:03:57
That's Oh, yeah. I mean, Jeff even listens to the podcast now. And it was just the other day with Addy going back to school now we've had to make some changes because her summer, you know, routine is different than her school routine. So our numbers that have needed to be tweaked a little bit, and I would, you know, I'm basically talking out loud to myself, I mean, I'm sure you know what I'm talking about where you're, you know, you're looking at the PDM I'm like, Alright, I know I need to change that. And I'm, you know, I'm, blah, blah, blah to myself, and just, like, just change it. You know, he's like, just like what Scott says on the podcast, like, don't wait, do it now.

Scott Benner 1:04:37
That Okay, that's great. And it makes me feel bad about considering calling this episode, Jeff bought a Korean kitten. So very, very close to that. I've made notes. And it's a it's a it's a contender, just so you know. I just keep thinking you like it's such a wonderful image of, you know, parents Love or that feeling guys have I don't know if women completely understand, like, when you guys look upset, we scramble in our brains, you know what I mean? Like, we're like, oh, how do we fix this? And I know everyone says that it's like it. But it's not just, it's not just guys ignoring the world and being like, I'll just say something, I'll make this better. You have an internal feeling like this woman that I really love is upset, and I need to fix it. And I'm imagining that there had to have been some common sense in while he was standing there with that kit and thinking, I really shouldn't do this, but that he just was overwhelmed by how much he cared about you guys. And he shows,

Sara 1:05:36
it didn't help that he had the other three with him when he adapted it, either. You know, it's like,

Scott Benner 1:05:42
it's really unfair.

Sara 1:05:44
I'm sure the feeling of this, I should not be doing this right now was going through like his mind. But of course, all three of the other children are there going. Oh, dad?

Scott Benner 1:05:56
Yeah, you guys, you're very, you're much too nice. The size of you very nice. I don't even know. There's almost nothing I think my children could say to put me in that situation. Right? Like, yeah, you're right. It's good. I just, I don't have that in me at all. I have another places not there. I defend my happiness first, does he know you're allergic to kittens when he buys this kitten? Or is that something you found out afterwards?

Sara 1:06:18
Um, no, we we knew. But I, I don't know what we were thinking. We should just get off the subject. No,

Scott Benner 1:06:26
no, this whole episode to me is about buying that kit. And just so you know.

Sara 1:06:31
Yeah, we were in a very, very bad.

Scott Benner 1:06:34
No, no, I, you know, and I highlighted a little bit to kind of, listen, I highlighted it a little bit because I want medical professionals to hear your story. And recognize that when they're standing in front of you, in a in a classroom, or in a hospital room and trying to explain this whole new world to you. And you're standing there stoically, and you're listening, the doctors, like, Oh, they got it. They didn't get it. They're, they're doing stupid things they shouldn't be doing. They can't think they're quietly in their head wondering why did this happen like that? You know, and then you send them out the door. And you act surprised that they didn't, like, you know, pick up more of it. And I'm not saying that you can stop people from being upset in a scenario like that. But you can recognize that it's happening, and spend a little more human time with them, to get them somewhere. That's what this podcast does. And I have I'm a little like, lit up about it right now. Because I see somebody I know who has some sway in this community. And they're partnering with a government agency to talk about how to talk about this with duly diagnosed people, like how do you get the people and get them the right information. And I'm seeing people talk to them. And it's all the same bowl over and over again, like the stuff I've been hearing for 20 years, like, here's what's important, this is important. That's what's important. I'm telling you right now, that what's important, is solid information. That's easy to understand, that you can put into practice immediately and see results so that you can build on it. It's not, it's not all of the stuff, you know, it's not the damn Pink Panther book. Like that's, that's not what's going to help anybody. I, it was seriously like, I don't know how many people have to listen to this podcast and have your experience before someone in the medical community hears it and says, Hey, you know what, we should probably just tell them what they need to know, in a way they can understand. And, you know,

Sara 1:08:31
I think it was helpful to that, you know, on many of the episodes, you've talked about just doing it on your own, I think I had to get comfortable with that and say,

Scott Benner 1:08:41
okay, yes, I have medical care if something were to ever happen, I feel comfortable taking her to the emergency room and letting them handle it that point because I'm not familiar with that. But the day to day, I don't really contact her team, ever. I just make the changes on my own. I don't, and doctors will say it to you, Hey, you know, some Well, some good doctors will say, Look, you're gonna have to get comfortable and make adjustments. But that's a different scenario, you standing in a in a cold room with a doctor aside, you know, saying, you know, this is on you, that feels different than hearing me say it. And so you need a person, you know, in my situation, speaking directly to other people so that they can be comfortable, they can see themselves in it. You know what I mean? And not, and not just feel like a guy just told me to do something, there's no way I can do because it's what it sounds like when a doctor tells you and then you I mean, I, I don't want to downplay what I'm doing here, but like, you know, you come on and you're like, you're listening to this regular guy here. And you know, and he's, he's doing it. If he I genuinely believe that people listening should think if this guy's doing it, I could do it. You know, because they're just there's nothing particularly special about me and I, I do it by not being scared by being the person who would have said no to Three crying girls about a kitten just by just by kind of standing up and having a backbone and saying, I'm not gonna put up with this. I don't know the answer, but I'll figure it out. And so now all the things that you guys hear now on the podcast that seemed like, I don't, I don't know how to put it, but like, they seem like staples in the community, at least for those of you listening, these ideas, just remember that they all started with me thinking, I'm not going to let this happen. And now and now I'm going to figure out how to stop it. And no direction whatsoever. Because I was not smart enough to Google anything. I don't listen to the doctor, I very much got in my own head and broke this all apart, which is now I think, why I understand it well enough to explain it easily. But but you can do that too. Like you can I hate to say think outside of the box, because that just sounds, you know, trite, but like there's a way to reverse engineer problems. And to remember that your first inclination comes from your fear, like, you know what you mean, like, the first thing you think is like defense, like, Oh, I want to make sure this doesn't happen. I want to make sure this doesn't happen. I flipped it around. And I thought, I want to make sure that this happens. You know, like, forget being scared, I want to be bold. I want to figure it out. And that's why I now talk in T shirt slogans on a podcast. I'm glad helps people. But I really think that you know, better direction better tools. easy to understand, repetitiveness. You can't let that go. Like, you know, when people always want to ask me like, which podcasts will tell me exactly how to do this. And I tell them, Look, I know there's a lot of episodes, but just listen to all of them. Because eventually something will come up that will stick to you. And I can't know. You know, I can't know what Sarah Beth we're here to make her feel good. versus what Jeff will hear versus what the rest of you listening will hear. Like, you all need to hear something different. So I had to keep prattling on until I cover all of you. Like that is sort of how it makes me feel when I'm recording it. Like it's why I like having free flowing conversations because they don't lead me to say the same thing over and over again. And I'm just really thrilled that this worked out so well for you. And how old is she now? Tell me a little bit about what's going on with her life? And then I'll let you get back to yours.

Sara 1:12:16
Oh, she's seven. She she's doing really well. I hope that it should we continue to see results. She just actually in July, she ended up going on the Omni pod. And so we've been fooling with that learning that system, which was a relief for me. I had mastered MDI, I would like to say I shouldn't say I had mastered it. I like to think that I mastered it I had done we were doing really well. I mean, she got those a one see results without that was on MDI that was not with a pump.

Unknown Speaker 1:12:50
Yeah. So

Sara 1:12:54
now that she has that, you know, I remember there was a time where she didn't want the the injections, she would do it breakfast, lunch and dinner. And then she do a lot of, you know, cheese sticks for snacks, or you know, something very low carb. So because she didn't want the shot. And she had said to me one day, she just broke my heart because she wanted something and I said you can have that. You just have to, you know, she started out by saying you don't let me eat

Unknown Speaker 1:13:21
anything.

Sara 1:13:23
And I just hurt so bad because she could have it. She just didn't want the shot that went along with it. So we finally I went into the doctor and said, I really would like to get her on a pump. Because this is now what I'm struggling with she she realizes she recognizes what's going on and doesn't want it. So and I don't want it to you know, become this, this piece for her. I want her to be normal. So

Scott Benner 1:13:53
I, I try to remind people that you know, you don't want an eating disorder and type one diabetes, and you don't want to create that kind of an adversarial relationship with food. And that's exactly what that is when she starts saying I'd rather not eat. If I have to do this, then you got to find another way. You know, right away. That's also what helped me believe it, believe it or not, that's what you know, when I talked about doing like over bolusing a meal that you can't Pre-Bolus for. I started figuring that out when artists had something similar one day when I she's like, Hey, I'm hungry. I was a great just, you know, let's bolus this much and like 10 minutes from now you can eat it and then she said never mind. Oh, and I was like, okay, she doesn't even want to wait the 10 minutes not not in this moment. She's okay with it Other times, but in this moment, she doesn't want to so instead of pushing. I just thought well how do I stop this from being a problem? And you know, then I just I just started did that math about putting in too much insulin to cover not just the food but the spike that's gonna try to happen and the numbers. Like I just sort of extrapolated out I did all that I was like, Well, I think about Did this much right here? And she eats, maybe the spikes still won't happen. When that happened. I was like, oh, wow, look, I got around another problem, you know, and kept her from feeling like she couldn't say that she was hungry. So I love that you did that. Good for you. You were terrific. You really are. And we went way over time. So I'm sorry about that.

Unknown Speaker 1:15:20
Oh, that's okay.

Scott Benner 1:15:22
Did you end up being nervous the whole way through?

Unknown Speaker 1:15:25
Oh,

Sara 1:15:26
no, I would say like, really, it was a lot to do with the podcast like it was other people's stories. having that connection, knowing that it was possible, and then be able there was I can't remember exactly which one. But there were. I mean, you've said it multiple times. But the focusing on being afraid of insulin, I there was a point where I was afraid. But you know, it's funny, because I talk to adilyn providers now. And it's, I have the opposite. I saw what happens to a kid with super high blood sugar, right? I see the effects of that. And that scares me more than the low. You know, so often, people are scared of their children going low. I've even seen people treat blood sugars that are like 8090. Because they're like, Oh, that's, that's too low. But not that that's wrong. I don't want to make it seem like that. That's what they're comfortable with. But I'm not. So it's kind of like I if I see, you know, anything above like 150 adilyn. Her whole persona changes. You know, we we jokingly sometimes I shouldn't probably say this, but we say that she turns psycho glycaemic. She's she just becomes this raging person when she's high, and it's harder to get through to her. So I mean, it's, it's stressful to see the numbers. And then it's also stressful to deal with the type of you know, her personality that evolves from this high blood sugar. So I hate high numbers. I mean, I would rather deal with a low and give her a juice box or, you know, a suite of some sort than

Scott Benner 1:17:15
and have the high so Beth

not only am I glad you shared that with people, but you just save Jeff on the cat title. Because psycho glycaemic is probably going to be the title of this episode. You really pulled his butt out of the fire, right? And then ninth hour, look at you. Excellent. 11th hour Excuse me, I forgot the saying, but you really came through unless you don't want that.

Unknown Speaker 1:17:38
Oh, I don't care what your title let you do your own thing.

Scott Benner 1:17:41
I got another note. The other day someone's like I needed an episode on this. It would be helpful if the titles had something to do with the content. I was like, too bad. Just listen to them. You'll figure it out. No, seriously, thank you so much for doing this. I really appreciate it.

Unknown Speaker 1:17:56
It was my pleasure.

Scott Benner 1:17:59
Thanks so much to Sarah for coming on and sharing her story. And thank you Dexcom and Omni pod for sponsoring this episode, please check out those links dexcom.com forward slash juice box and my Omni pod.com forward slash juice box in mere moments. I mean, it'll probably take longer than moments. But in no time at all, let's say you could be wearing the world class Dexcom, ci, six continuous glucose monitor, and the amazing tubeless insulin pump called Omni pod. Just have to get started. You're looking for results like you're hearing about from people. These are some of the tools that some of those people are using. You could be some of those people too. last little thing before I go. Like I said, I'm speaking in Atlanta this week, and it's on February 29. For those of you who snag tickets, I can't wait to meet you please come up and say hello. And for those of you who didn't get tickets in time. I know you're not used to a type one nation event selling out but you're bringing Scott down there. Yeah, Jenny Smith. These tickets are not going to last. Anyway, I hope to see you. If you're in Wisconsin, I will be there Thursday, March 26. From 5pm to 8:30pm. Doing a three and a half hour talk. It's going to be a talk followed by q&a. I'm flying all the way to Wisconsin, I want that room nice and full. Okay. These uh, you can find these links at Arden state.com for slash events. After that, I'm taking a little break to watch my son play some baseball. I'll be back at it on Saturday, May 30, at the touched by type one event in Orlando, Florida. And then I've got something coming up in August at the jdrf type one nation event in Virginia. I'll be in Richmond, that Saturday, August 22. I think there's a couple of other things that are going to get put on the calendar between now and then but for now. That's all All I have booked and trust me. I'm getting tired of flying places. So please come see me before I I'm too old for this. I just I got sick The last time I flew. There was a kid in the back of the plane. I sat down I heard it right away. Like that's it. I'm dead. Sure enough, lost my voice. You heard it in the last episode, right where I'm doing the promos and my ha I couldn't even get like my words out. Terrible. I'm better now. Thank God. I'm going to Atlanta in five days to speak for four hours. And two days ago, I couldn't speak on the telephone. So I've been resting my voice, which is probably something you can imagine and something my family seemed kind of happy about. They were like snickering at me with a doctor said I had to rest my voice if I was going to make it to Atlanta, but I will be there. Will you? I'll be back at the end of the week with some technology news. I think you're going to enjoy hearing about

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#307 Diabetes Pro Tip: Emergency Room Protocols

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

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

Scott Benner 0:00
Hello, everyone, and welcome to Episode 307 of the Juicebox Podcast. Today's episode is another in the diabetes pro tip series. Today's topic, emergency room protocols. This is a really great and complete conversation about how to handle trips to the hospital. And my voice is a little broken up right now you may have just heard it. So especially when you get to the ads in the middle, you'll have you know, I'm not quite like, but it's getting there. So I'm doing as little speaking as like Ken today. That said today's episode of The Juicebox Podcast is sponsored by Omni pod and Dexcom you can get a free no obligation demo of the Omni pod tubeless insulin pump sent directly to your home by going to my Omni pod.com Ford slash juice box. And to learn more about the Dexcom g six continuous glucose monitor, you're going to want to go to dexcom.com Ford slash juice box now there are links in the show notes of your podcast player and at Juicebox podcast.com. For all of the sponsors, check them out. So today Jenny Smith and I are going to be talking about going to the hospital with Type One Diabetes. Jennifer Smith is not only a good friend to the Juicebox Podcast, but she is also a person who's been living with Type One Diabetes for over 30 years. So she has first hand knowledge of day to day events that affect management. Jennifer holds a bachelor's degree in human nutrition and biology from the University of Wisconsin. She is a registered and licensed dietitian, a certified diabetes educator and a certified trainer on most makes and models of insulin pumps and continuous glucose monitoring systems. She is also my partner in these diabetes pro tips. You can check her out at integrated diabetes.com you can actually hire Jenny, she'll help you through your process. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And always consult a physician before making any changes to your health care plan. or becoming bold with insulin.

So Jenny, this whole time we're going to talk today, I think we're gonna just talk about this one.

Unknown Speaker 2:27
email that I got.

Jennifer Smith, CDE 2:28
Yeah. Which was great. And I think I mean, we've touched on some of these points in like some of the I know, we did like up a safety in a hospital preparedness and all of that kind of stuff. But I think this hits a really specific mark of most people that go to an emergency room in a very emergent setting. They don't really know, and why would they know that the staff there is not prepared to deal with Type One Diabetes, they're not and they're not in. I don't say that in a like a god, they're not educated they are they're highly educated, they're educated in a million different things, right. But their focus is so much not type one. And because the scope of how we manage type one, especially in the past 10 years, has changed so dramatically. They the staff, they can't keep up with that they they don't they don't have time to keep up with that. So when you come in, you know, on these fancy gadgets and all these things, and they're like, Well, I know an insulin drip and I know how to, to hook you up to glucose and that's what we're gonna do. Like and you step back and you're like, No, no, no, no, I do this,

Scott Benner 3:49
you could you come to realize what they really understand is just how to keep you from having a low blood sugar incident while you're there. That's what I know how to do. So you may or may not be surprised by the number of emails I get yearly from nurses and doctors who have children who are diagnosed or sometimes who have themselves diagnosed. And inevitably, there are three sentences or three sentences in their email that describe I'm a good nurse. I'm a good doctor. I don't understand Type One Diabetes at all, every time. It's Yeah, you know,

Jennifer Smith, CDE 4:26
I'm working with a family right now. The the father is a physician and the mother is a nurse practitioner and their little child they I mean, they came to us and they were like, We know diabetes, but we don't know diabetes. You know, I mean, we know the coded book description of this is what you do, and that should be cut and dry and playing the limit. Not cut and dry. There is no book anything nuanced just a bit, right. Right. Right. So I don't

Scott Benner 4:59
I think misty would mind her name being used, Misty came into the private Facebook group that we have for the podcast. And she shared that, you know, her child had to go to the hospital. And then she had all of these questions afterwards, and statements and things like that. And when it ended, she said, I would love it if you and Jenny talked about this stuff. And I said, Okay, you go ahead and put a list together of what you think of, you know, as emergent that came from this experience. And Jenny, and I'll try to talk about it. And she really did. So misty, congratulations, this, you are the founder of this feast today. So

Jennifer Smith, CDE 5:38
yeah, and she did not I mean, from the topics that she noted, would be helpful to cover and everything. I mean, quite honestly, it kind of speaks to the amount of medical education you get, yes, it's only in one field. But the amount of medical stuff you learn, when you become either the person with diabetes, or the caretaker for someone with diabetes, I what she has here is very much in a very, very specific way really important, and should quite honestly be like taken to the emergency department heads. And this is what your Doc's should have a list of protocol to follow up. So

Scott Benner 6:19
that's what we're gonna say the real question becomes, excuse me. The real question becomes, what happens in an emergency situation in a medical situation, when you are the most knowledgeable person in the room and have the least power? Right, apparently to you in the moment, right? Doctors, lab coats, people bubbling around, you're not a doctor. But it turns out, you do have power, you just need to know how to assert it.

Jennifer Smith, CDE 6:46
How to wield it exactly. So

Scott Benner 6:47
let me read a little bit here. This, this emails, not miss these initial post in the in the Facebook page. This is the email she sent to me. And so she said, Hey, thanks for considering making this up. Thanks for considering making an episode about emergency care. Going through the sickness with my son, which was the first time he had had a stomach bug since diagnosis almost a year ago, made me start thinking about how to figure out what else I don't know. In this instance, probably the three biggest mistakes made the ER ended up being the doctor turning off his bazel they didn't hang dextrose and refused them an absolute refusal to call an endocrinologist. And she said, I knew that these things weren't right. But by doubting herself and assuming that the doctor must know better than she did. You know, she had no idea in the end, how to make him do those things that she knew needed to be done. And she should have been more assertive, she says and sooner. Mm hmm. So she put she just puts a bulleted list here. That's terrific. I and I think we did go down the list. Right?

Jennifer Smith, CDE 7:55
Absolutely. Because it's it's a great list. And I think some of the points can actually even be kind of melded together in a way. But I it is, it's a very well put together list. It's actually In fact, many of the things on here, when we talk to people, the people that we work with in our practice, and we give them our information about prepping for a hospital stay, we have not only a hospital stay or expecting like for a planned surgery, but we also have a lot of these things covered so that you do know how to advocate for yourself, because that's really what it becomes. When you go to the emergency room. Unless you are the person with diabetes, and you're completely out. Well, you know what? They're gonna do what they can do to save your life. And you have no control there then. But

Scott Benner 8:44
yeah, and maybe you can get into a situation where you don't end up like you've heard people in the past talk about in the podcast, where they have family members sneaking them in insulin, and they're like, you know, like, wouldn't it be nice if that's not how this went? Right? It would be lovely for your, you know, your medical doctors to know about the insulin your body. So Right, right. I have a couple of experiences that I'll I'll interject if they fit, and I know you're going to have some. So first question was, how do I know when it's time to go to the hospital or even at least to call the endo? When it's a specific type one problem, I guess around illness? When do you tell people to call?

Jennifer Smith, CDE 9:23
Yeah, I mean, we usually tell people to call at least to call their endo or I guess even a step before that is make sure that you've addressed with your endo a 24 hour emergent line to be able to contact somebody at because I guarantee that your specific endo isn't going to be there at two o'clock in the morning, everything every time something happens, right. So the step ahead of that is knowing who to call, what's the number who will I actually talked to you? Is it just going to be a nurse triage or is it really that I'm going to get to talk to somebody that's going to give me some information without playing phone tag writing

Scott Benner 9:58
services still exist to you might just be They do person taking a message,

Jennifer Smith, CDE 10:01
right? Correct. I mean, most systems, most healthcare systems do have 24 hour nursing care within your, like, you know, whatever your insurance coverage or whatever system you're in, right? And that nurse should also be the one who can help determine what are your symptoms? What's going on? Or what what's happening with your child? Is this emergent enough? I'm going to call the doctor on call, and we're going to get some answers for you or no, you need to go to the emergency room there. I mean, we've used it a couple of times for for our boys when they have been like, sick fever, like, you know, rolling around, not feeling great. I'm like, Okay, let's call the nurse and see if it's time to go to the doctor, you know, um, but so they're, from our experience, they've been very, very helpful and good. So that's a first step, if it's daytime, certainly try to call your endo office get in a very emergent message that, hey, this is what's going on and have some very good facts to give them, you know, we've checked blood sugar, we've given insulin, we've checked ketones, you know, my child won't take any fluids, or my child can't stop vomiting, or those are very, very important things to be able to give facts, so they know what to do with you.

Scott Benner 11:15
I also think that it's important not to get caught up in the emotion of it, telling stories and like, they need the facts. They don't need the extra stuff. My mother in law was over. And yeah, let that go. That's not

Jennifer Smith, CDE 11:31
a kid's friend was over three weeks ago, and had you know, the flu Two days later, they don't care. They don't need to know,

Scott Benner 11:37
we've all been around a person telling a story who's telling a story. They're five minutes into it, you're bored out of your mind, and then they go. So anyway, it was one o'clock in the afternoon. Wait a minute, was it one o'clock? Or was it 130? Right? I you know, I think and you're like listening, going, it doesn't matter. Just tell me the story. Right? So yeah, and I think to to recall, to remember, is that it's possible, you'll get a really learned person on the phone who can hear you and respond from their own brains knowledge. And you might also get someone on the phone who's just following a flowchart waiting for you to say a key word. So you know, exactly. So expectations, I guess, right?

Jennifer Smith, CDE 12:19
And definitely, you know, like I said, Have the facts in order that you can tell them so they can direct what they need to tell you in the right way. And then, you know, if you really just don't know, you know, when is it actually time to just pick up and go to the hospital? I mean, certainly, we usually say if it's, in this case, you know, her son had a stomach bug. So my expectation is that there was a lot of vomiting, or maybe there is vomiting, and the other end as well, kind of coming out. I don't know, stomach bugs are pretty nasty. And for little kids, or kids of any age, even adults, you could be so like, just out of it, that even remembering to take a sip every couple of minutes or remembering to get, you know, some food in or some carbs in or to try adjusting your insulin this way. Some of that may completely go out the window. So I mean, when is it time to go to the hospital when you've put everything in, and you've adjusted, and you've tried all the sick tape protocol that you've been given to try. And it's not working, and especially if there are more. So that higher ketone level, you need to go to the emergency room, don't play with it.

Scott Benner 13:36
There's the idea. The illness is not fixable, you are ill now you're ill, you're either able to manage it at home in a way that isn't going to become dire. Or you need to be at the hospital prior to it becoming dire. Right, right. That's correct. That's the idea.

Jennifer Smith, CDE 13:52
And a lot of some of the evaluation in this case would be hydration, for a stomach bug, when to go to the hospital, especially for little kids. If they haven't been able to even take anything in fluid wise or fluid with a little bit of carb. It's It's time to go hydration is a really, really, if you get dehydrated, it's hard

Scott Benner 14:15
to recover from that and pay attention to your ketones. I would imagine when you're sick, yep. Alright, so then she says, What do I take with me? Maybe you should talk about this stuff you have prepared in case you're too sick or unable to speak for yourself a list of medications, outlining of what your normal type one care is like, what hospital is best for you to go to if you have a choice. She gets there. She lives very far from her hospital, which is interesting. I live in a metropolitan area. I never think about that. Like, I never I don't realize that some people have to take an airplane to an airport to fly somewhere else. Like that's not the life I live. Yeah, if I wanted to go to a children's hospital right now. I could go to five of them if I wanted to. Right. Yeah, right. So but that's not everybody's story. So what should you I mean, you've talked before though about having a go bag for yourself,

Jennifer Smith, CDE 15:05
yeah, next to the next to the door or even if you keep it in the car, as long as doesn't have any, like meds or anything that will freeze, you know, if you live in a cold place or way too hot place. But I mean, some of those things that should be in a bad bag, especially if you're on a pump, things like extra reservoir tubing, infusion site, even a bottle of water, extra batteries, tapes, adhesives, you know, all those kinds of things, even some extra like glucose, glucose, gel, juices, simple sugar, all the things that you would pack, to potentially take along on like a vacation, let's say, could be in that bag along with and I love that, you know, she pointed out things like a list of meds 100% because you know what, when you're bringing your child someplace emergently like that, while you may the back of your hand know exactly what the rates are of bazel delivery and what they get, and maybe if they're on injections how much and when, when you're in that emergent situation that may completely go out of your brain, and you may be fumbling to remember. So having that all, you know, written down even, you know, if you upload your pump, do a printout once a month of the changes that are in your rates, ratios, you know, time of action and everything that's available on every pump load site, right? download it, put it in the bag, that way it's there.

Scott Benner 16:31
Yeah, yeah, I think to as you were talking, it made me realize I'm gonna do something. So Jenny, and I have topics for some of our episodes. And we just keep them in a simple note in an iPhone, right. And it's a shared note. So I type in a list, Jenny goes back and strikes things out or add things we go back and forth. And as we make changes to it, the other person can see the changes, you could just simply have a note in your iPhone that is shared with your husband and your mother and and those people, that is a list of medications, what basal rates are stuff like that, so that everybody has access to that information. The second,

Jennifer Smith, CDE 17:06
the other really good like I'll like I never take off my ID bracelet. But many ID bracelets like mine on the very back of it. Now of course I can't get it off. But on the very back of my ID bracelet is actually a an 800 number and a website, that's it's free. All they would have to literally do is look at my ID bracelet. and log into that and all of my medical history is there. So if your child wears a necklace or a bracelet or something like that, many like American medical ID does a really good job. Most of the other websites. I don't know if they offer that as a free service when you buy a bracelet, but it's a nice way that again, you don't have to have that list, like printed out. It's there. It's excellent.

Scott Benner 17:55
Okay. Okay, Misty says what are the universal non negotiable things once you're at the ER, like for your safety? She says that in their case, it was not shutting off the pump, you know, they hanging dextrose not sailing way. That's a way that one's Interesting, isn't it that they gave him because the sailing drops your blood sugar,

Jennifer Smith, CDE 18:17
like well, and the dextrose versus the Sallie Mae, you know, in her circumstance, she's right. But in other circumstances, depending on where blood sugar was, you know, hanging sailing versus dextrose. If somebody's coming in, in DK, obviously feeding them more glucose, at least initially, you know, you're gonna actually you need hydration. So there are some pieces that go along with the illness that you've come in for, to pay attention to. But I think what she's really saying here is asking what's being hung? Right? Right. It's it's knowledge to say, okay, you're hanging Sally, and he's come in with a stomach bug, I understand that you're trying to provide some hydration. But let's look at where blood sugar is. Let's look at all these things, then she, you know, again, also very correct. And it's a big thing that I go over all the women and men and parents that I work with. If you go to the emergency room, do not let them take your pump. Do not let them take your pump. I mean, like, if you have to, like scream and yell and whatever, then advocate and don't let them take your pump. If you come in because you've had a pump malfunction. Obviously, your pumps not gonna be doing what you need to

Scott Benner 19:32
take your busted pump.

Jennifer Smith, CDE 19:34
There's a difference in the story, right, but definitely not shutting off the pump. The other thing here too, is they don't necessarily know pumps well enough to even be able to know whether you shut it off.

Scott Benner 19:47
So Jenny just brought something up. And

Jennifer Smith, CDE 19:49
so I kind of, I kind of sugarcoat that in a way, like, they don't know. It's like,

Scott Benner 19:58
it's like when my kids were little We used to go into a spare room, pull the sofa away from the wall a little bit and hide Christmas presents behind the sofa. And the kids never knew where they were because they just didn't know to think about that. Right. So So I have two hospital experiences with Arden. And they both come within the last year. So they're fresh in my mind. One of them is an emergency room visit where Arden had abdominal pain. It was bad. We went into the ER, the first thing I started doing and now keep in mind that this ability to do this comes from a confidence standpoint, like I was confident when I got there, so you know what you're doing. So I got I said to the nurse, and anybody who walked in Arden has type one diabetes, she's wearing an insulin pump and a continuous glucose monitor. Her continuous glucose monitor is reading her blood sugar live, here it is I held it up and showed it to them. And her insulin pump is giving her basal insulin and boluses in case she gets larger, we want to keep these devices on her. Okay. Now you would think they'd be like, Oh, I don't know. But But when people realize, you know, and they realize they don't know, they get a little smaller in the conversation, if that makes sense. like someone's in charge and someone's not. Now it is not the you're not trying to lord it over them. You don't want them to be like, you're not like, Hey, I'm here. I know what I'm doing back up. It's a very symbiotic thing you're trying to set up

Jennifer Smith, CDE 21:21
as you've also come in for help for something else respect.

Scott Benner 21:24
Right, respect what they know, try to get them to respect what you know. Mm hmm. It's very important not to come off crazy during those initial conversations. Correct. flustered, like you don't realize it. But if they look at you and your hair on fire, they read that as I'm not listening to that person, right? You know, and that's good on them, they shouldn't. And also keep in mind, that emergency room people deal with a lot of crazy people. So know if you're crazy or not. And so you have to build a little quick rapport, simple conversations, ask questions. And I also found that I'm was kind of, in my mind scoring the people, what did they understand what right, when did they get a blank look? Or when did they have a response that made sense, you know, try to figure that out, then sometimes, there were people in the scenario I just stopped talking to about diabetes, I directed it more towards the nurse who seemed to understand what I was saying, the one who wanted to give me a little space, and did and that's how I did that. Right. And, and it worked out really well.

Jennifer Smith, CDE 22:27
And I think at the same time in your scenario, kind of bringing in until she mentioned a little further down, not until the nurse really was like, I need to set you straight. And I'm going to call in somebody else to talk to you and set you right and whatever. And she called it an endo consult, quite honestly, when you go to the emergency room, and you know that you may have a stand up and put your hands up and say I got this I know. And you know what you can call an endo bring them in, because I would like another advocate for what I'm doing. right up front. Ask for them. There is always an endo on call. There's there's always a specialist on call that will come.

Scott Benner 23:12
And if I could play psychologist for a second, when the nurse says that the misty that's the nurse saying, well, I really don't know enough to write to be the stop in this situation. I think that woman should stop telling me what to do. But I don't have enough facts to stop her. I'll get a person with facts that come in, then we'll see later that the person with facts came in and, you know, right, told them.

Jennifer Smith, CDE 23:36
You know, hopefully overall, the nurse may have learned something in that setting, too. You know, everything is kind of with diabetes, I find it if people are willing to listen, it's a teaching moment. So you know, hopefully for the next person who comes in or the next parent with a child who comes in this nurse will be a little bit more in the know and be able to say you know what, I don't know enough about this. I do understand that you feel like you know what you're doing? I'm going to call the endo. Let's just make sure everything is is good. Everything is the way that it's supposed to be going based on what you came in here for, you know, three.

Unknown Speaker 24:11
Yeah, exactly.

Scott Benner 24:15
One second, I gotta tell ya, I found myself at a speaking event last weekend. And outside of the event, there were vendor tables, and one of those tables was on the pod. So I went up to the person working the table and I said, Hey, I'm pretty good at telling people about on the pod Could I try? They said yes. And then the next person that walked up to the table, I stepped up. I said hello, how are you? Are you interested in the Omni pod to boost insulin pump? And the guy said Not really. I saw Whoa, why not? Let me tell you. So first I found out was he interested in a pump? And he was then I explained how the Omni pod work did It was a standalone device that didn't have any tubing, but he could wear it while he was bathing or working out, going swimming in the ocean even. Then he started Listen, I talked to him about how important it was to continue to get his basal insulin during those activities, and how if he had a tubes pump, you'd have to disconnect to do those things. And I had his attention. After that, we talked about the personal diabetes manager that's used to control the pump, and even discuss that sometime at the end of 2020. On the pod would be adding an algorithm that their horizon system would be coming out that this was the perfect time to get acquainted with the Omni pod. Just like that he picked up the free no obligation demo, and took it home. And you can get one for yourself at my Omni pod.com forward slash juice box. When you go there on the pod, we'll send you an absolutely free, no obligation demo of the Omni pod. Check it out. All right, I'm gonna keep going and do the last ad for the show right here. And of course, it's for the Dexcom g six continuous glucose monitor, my voice is failing me. But the Dexcom will always be there for you. The dexcom g six is the only continuous glucose monitor that I would ever put on my daughter. It gives back information about the speed and direction that her blood sugar is moving, that is so necessary and needed in our life. It is how we make every great decision about food, insulin, how we stop low blood sugars from happening, how we head off high blood sugars before they become high. It is how we do everything. Every insulin decision we make begins with the information that comes back from the dexcom g six continuous glucose monitor. I look there are links in the show notes of your podcast player and at Juicebox podcast.com for both on the pod index calm. But you can just remember this right here, you'll get to where you need to be dexcom.com forward slash juicebox. Go read about the alerts and the alarms about the share and follow features. Figure out if this is something you want. Don't take my word for it because my word is do it. That mean if you want to trust me just jump right in. But if you don't want to trust me, Go read about it at least go find out how your child or loved one can be anywhere using index calm and you can be somewhere else remotely seeing their blood sugar's my daughter's blood sugar right now is 71. She's at school. It's 1030 in the morning. I can see that right on my iPhone dexcom.com forward slash juice box are the links in your show notes. Were at Juicebox podcast.com. And don't forget, if you're thinking about moving to an algorithm based pump at some point, you're going to want the Dexcom so now's the time. One second, I gotta tell her something.

Jennifer Smith, CDE 27:57
She fallen asleep in class because she's so tired from studying so late last night.

Scott Benner 28:02
She's actually on our way to lunch. She's been at school for 25 minutes and she's going Watch now which is you know,

Jennifer Smith, CDE 28:06
we always we always talk at the time that she's heading into lunch. Yes. And you're always texting her do this or did you do this or eating today?

Scott Benner 28:15
Want me to pull the curtain back a little bit people like hearing about that. So there's a reason why I'm always recording all Ardennes at lunch and I'm much more well thought out than I give myself credit for Do you believe I am. Okay, and then she asks the end. Is it ever okay to shut off insulin. So misty, I'll tell you that. I was rockin Arden's blood sugar for hours in the emergency room and there was no food going into her like we had some juices once in a while we were sipping juices always let the nurse know juices happening. Because the nurse was always like, Look, if you can't manage this, we'll use I don't know what it is dextrose or glucose or something like that. Right? And I was like, okay, you know, but I was trying really hard for that not to happen because just like the nurse who called the endo on misty, I didn't have any perspective for that. I did not know what was gonna happen next. And I use texting Jenny, I was like, what's gonna happen if they give her this? Like, what trying to be ready because I've taken insulin away, like, I don't know what to do. Right. And we kept going for a long time. But finally I just couldn't. I couldn't keep it up anymore. Right. And so they gave it to her. And the woman's like, let it go for a minute to see what happens. She was right like it shot up. But it came back down pretty quickly again, like had I given her insulin for that that would have been a major, like problem, right? Yeah. And then once we got that drip regulated, and then got her bazel rate to where, like I just adjusted her bazel to manage the dextrose instead of what it was usually managing. She was getting a very tiny bit of insulin. Yeah, but a little bit. And that was it. And it's making me realize as we're talking, the tools really do work anywhere. Like they were in that situation too. So I guess confidence and honest actual confidence that comes right that comes from experience that you No, it's gone over and over again, the right way, is really helpful.

Jennifer Smith, CDE 30:05
And I think that, you know, as far as what you were doing, because you know how to manage and you know how to adjust, you know how to turn things down or turn them up or micro adjust with little bits of juice, if you know that if the person can take a little bit by mouth, and it's okay, according to what, you know, their protocol is in the emergency room, or again, like a dextrose drip, if that's an option, and you can adjust accordingly with your basal insulin drip. Great. But it's and I hesitate to say, is it a yes or no? Is it ever okay to shut off insulin? Technically, no, for somebody with type one? I mean, really, it's not. I mean, we, we know what happens if there's 100% deficit of basal insulin, you're not going to see the impact right now. But you are going to see the impact in the next several hours based on that deficit of bazel. That was supposed to be there. Even if they needed less basal insulin, they will always need basal

Scott Benner 31:05
insulin, and you and if you get to that spot where your it all is out of control, they're going to take it over, then they are going to take a minute your life feels a danger. And they don't think that what you're trying helps them you're going to lose control the situation. Right, right. And that's, that's obvious. I want to fill in here that misty said that eventually, it seemed like the ER doc was probably confused about pump therapy in general, and didn't realize that her child wasn't also getting a long acting previously injected insulin. So that doctor did not understand what the pump does

Jennifer Smith, CDE 31:42
know. And that's not a common misunderstanding, quite honestly, like I said, initially. The doctors and the nurses and the staff that work in the emergence and the emergence setting of an emergency department, they know a lot, they really do. But they're they're not schooled in, in this setting. What was the difference? Again, between type one and type two, they're just, I mean, they know if they sat down at a desk to somebody, they could tell you the difference, right? But I think because they don't work it all the time. There really is this disconnect in understanding someone with type one diabetes, and I hope lots of healthcare professionals. Listen, Amy, but there is a definite you don't have insulin production, you have got to have at least the background drip drip, drip, drip drip of insulin. And if you're somebody on MDI, which misty also asked, you know, what about people who are using multiple daily injections, what about them, if and that kind of goes along with the emergency preparedness bag, if you can grab your supplies and take them along to the hospital with you, and you're on multiple daily injections, I guarantee you need to grab your basal insulin, whether it's you know, whatever brand you're using, bring it along, because while the hospital will have within their formulary, a basal insulin to use. They may want not know how much you're using, and they'll base it on a formula to calculate how much to give you. But if you don't tell them when you've taken your last dose, or when you usually take your doses of basal insulin, in the hectic nature of what they're trying to do for you. Maybe you take it at 5pm every night, and you end up going to the emergency room at 3pm in the afternoon, and you're there for seven hours. Well, you know what 5pm comes and you don't get your basal insulin, you're going to be at a deficit, they don't know that.

Scott Benner 33:39
And they're gonna be not inclined to give you a eradications they don't understand. So here she says, How should you advocate for yourself for your child if things aren't happening, right? Like, she's like, what if like asking nicely just doesn't work? I think then it's okay to ask to speak to someone else. Correct. You know, like, at some point, you have to just say, Listen, I really do see that you're trying to help. And I don't I'm I always put it back on myself. So there's a little trick I use sometimes in personal communication, where if things aren't going the way I want them to, and I believe it's because the other person is not understanding me. I put that misunderstanding on me. Right. Maybe I you know, I think maybe

Jennifer Smith, CDE 34:22
I didn't explain it right.

Scott Benner 34:25
I'm not explaining this correctly. But it's obvious that we're not on the same wavelength here. Could I just talk to someone else and maybe re explain, maybe they'll hear me differently, you know, maybe how I'm saying it will hit them differently, whatever. But just know that I've been at this a long time. And I know this isn't right. And so despite this can't be the end result where we're at right now.

Jennifer Smith, CDE 34:48
And that's where I think advocating sooner than later. If you are getting any pushback, even in the first you know, minutes of being there. Ask for a console. With an endo, ask for somebody to come in who can from an understanding place, advocate with you and or for you based on what you then tell them? And I think another piece that obviously goes into it is, what is your typical plan of care for a day? Right? How much insulin, how sensitive Are you all those dosing, you know, strategies that you use all those doses and everything that you use from a ratio standpoint, sometimes having it just written down, rather than trying to explain it visually to somebody who is medically trying to help you at that point. They could read it, and it may just click

Scott Benner 35:41
Yeah. Because they're not used to looking at your pump settings are thinking about it, maybe even the way you talk about it. And I listen, I speak to a ton of people as you do. There are a million different ways that people explain the same things all the time, right? Like you hear somebody say it one way, then someone else says it another way. And then a third person found a fun way to say it. And like, you know, versus the situation, you don't want to be using the fun way around the house to explain the doctor because they don't know what the heck you're talking about.

Unknown Speaker 36:06
No, no.

Scott Benner 36:08
So So Arden's emergency room visit was eventually, it turns out because she had a cyst next to her fallopian tube, caused her like incredible, like stomach pain. So eventually, after a lot of testing for other things, we figure that out. And we found ourselves getting surgery for art and to have the cyst removed. So we must have met with the surgeon, four times prior to the surgery. And every time at the end, I would just say, hey, just wanted to remind you that Arden has an insulin pump, and a glucose monitor, right? And that we want to keep them on her doing, but it's really only a 45 minute procedure. And the doctor was, oh my god. Yeah, that's great. Right? You guys are doing great. Just do it. She just boom, yeah, sure. Then we get to the hospital that day, and we're doing intake. And I realized the first nurse is just getting her set. She's not going to be part of the procedure. But then eventually another nurse comes in, who's obviously going to be in the room, I say, Hi, I don't know if the doctor told you. But my daughter has type one diabetes, and she picks the chart up. And look, she has no I didn't know that. And I was like, okay, and I said, Well, she she does. And she's wearing an insulin pump and a continuous glucose monitor and look at her blood sugar right now, look that I've kept my daughter's blood sugar between 100 and 130 for the last 12 hours, because for this, okay, right? And so keep in mind that that's incredibly difficult to do. And I don't want you to take this the wrong way. I've done it. Okay. So and if you need it for another 45 minutes, I can I want to Okay, she goes, Well, protocol is and I went Oh, okay, so now my brain starts going argue with the doctor said it was okay. No, don't do that. Ask for the doctor, maybe. Then another nurse works walks in the room, I swear to you, I turned away from the woman I was talking to look at the next one went Hi. I don't know if you know this or not like the first nurse wasn't even standing there anymore. But my daughter has type one. And I went all through it. And luck habit She goes, my best friend has type one diabetes. While you're doing great. Let me see your graph. I think my daughter, I think my friend has a dexcom too. We talked about this sometimes. You're doing great. You do whatever you want. Yeah. And that was it. And I said, Okay, great. I said, if she does get low, feel free to give her glucose to bring her blood sugar. Would you like to take her phone into the operating room? And they were like, Yeah, absolutely. And they put it in a surgical bag, they stuck it on the operating table so that it could stay connected to everybody. Once I found somebody who got it, she was thrilled to not be involved in it. Right? Much like your school nurses, and your and your administration school, once they realize you can take care of this and you're like, we don't want to go to the nurse anymore. That's their dream not to take care of your kid, you know. So I found that very same situation kept our blood sugar nice and stable during the procedure. And then as soon as she was out, and her blood sugar tried to go up, I stopped and I was much less aggressive than normal. But I had a goal like I'm going to try to keep under 170 you know without getting her low because she was she was loopy.

Jennifer Smith, CDE 39:17
Yeah, yeah. anaesthesia is not fun.

Scott Benner 39:20
Right. And, and it worked. But it didn't work because I had the conversations with a doctor didn't even work because I had it worked because I kept having the conversation. Right? So don't get into a position where you feel like I've said this once because said it once to somebody doesn't understand.

Jennifer Smith, CDE 39:38
And it's also hard in that scenario when you've explained it. And now you come in and you have to explain it yet again. And then they come in with more people and you have to explain it yet again. It's hard not to start to get like this escalation of, oh my god, if I seriously have to explain this to one more person. I'm gonna like my head's gonna explode. We I mean, you really have to take that level down. So that you can advocate well for yourself, and you don't start to look like the crazy person, right? Really think

Scott Benner 40:08
about the suspension of, I don't know what it is expectation or ego or something like that. You're just, you're just and I always explain, I never explained it from a asking point of view, I was always being Matter of fact about it. Like, you don't mean like there's there's, there's an idea behind having you know, whether you're buying a car or any kind of like a situation like that someone's in charge, right? Like someone's in charge. And when you start at the hospital, by default, the hospital people are in charge. If you become subservient in the conversation, you are immediately under them, and you'll never go anywhere else. Right, right. And it's just it's all human interaction. So you start with Hi, you know, I don't want to sound crazy are full of myself, were really good at this. Let me show you how good we are at it. I promise. I'm, you know, this is the truth. And here's what I'd like to do. Here's what I think I can accomplish with that work for you, then you kind of loop them back into the process again, showing them they're important. It's manipulation, really, but other people call it communication, but you know, what you gotta do?

Jennifer Smith, CDE 41:16
You do. And sometimes it's sometimes even the team might have, you know, in a scenario of going to the hospital, even for like a planned procedure, like the case of art and surgery, right? I mean, in in August, I had surgery for kidney stone. And it was entirely different than the surgery I had just a couple months before that in May. In August for my kidney stone. I had to, like my mom came to the procedure with me after it when she was bringing me home. She's like, I can't believe how many times you had to explain to different people the same exact thing. And I was like, yep, I know. I've done this many times now. And she's like, I know, but she's just like, you know, really proud that you didn't get so flustered. And like she's like, I would have like hit somebody over the head with a charge. She's like, I wouldn't have done that. I'm like, well, you would have but you know, it was actually the anesthesiologist who was the most besides the admitting nurse, who was the anesthesiologist, for me who was really phenomenal. He, he was really interested in my CGM graph he was really interested in in fact, he kept my phone in his pocket. The whole entire procedure, you know, and he, he was awesome. It was actually the surgeon who kept asking me like, how much did you turn your basal insulin down? And like, I didn't turn it down? Because I know what my basal insulin does. Totally fine. Are you sure you don't want to turn? I'm like, Look, buddy. I know what I'm doing.

Scott Benner 42:49
Do your part. I'll do mine. How's that? So

Jennifer Smith, CDE 42:51
yeah, it was but yeah, you'll encounter different people. And just continuing to kind of continuing to know that you have rights, you have rights, you as long as you do know what you're doing. Your Rights include advocating for yourself, and also asking for other care team members to come in, that may be able to help you better, right,

Scott Benner 43:16
right. It's like being on the phone with customer service, you realize the person you're talking to is does not have the power to do what you need them to do. And you got to get somebody else you just gonna have an argument. All right, Misty says, you know, What rights do patients have once they're in the hospital setting? And what she means specifically by that is, can you demand things be done in a certain way? But then it's interesting in her in her question, she doubts herself, she says, and how do I verify that what I'm asking for is actually the best for treatment? So how do you like how do you make the leap in your head that this is what we do at home, but maybe this doesn't work here. Right now, maybe they know more than I do.

Jennifer Smith, CDE 43:53
Some of it's also in terms of, you're going to the hospital with a condition that you know how to manage, but you're going to the hospital, let's say it has nothing to do with that condition. You're going to the hospital because you got severe abdominal pain. Clearly, Scott, you don't have any idea why Arden had abdominal pain, you can't like see into her belly and see what was going on. I mean, some of those things, you have to say, You know what? I came here for this. You're the team, you're the experts, I expect you to figure out what the pain is, but I've got this part of it. I've got the diabetes management part of it because I do this 24 seven, and you don't. So some of those things, you have to you know what you're requesting. I mean, if you're requesting something like jelly beans that your kid needs to eat, but he's throwing up quite honestly, they're probably going to look at you like you're crazy and say you know what jelly beans might be what works really well but he's not going to keep them down. So let's do a deck straw strap. Yeah.

Scott Benner 44:56
Again, I'm a big fan of keeping people in involved. So when I The last thing we did before our knee surgery was I said to the doctor, here are all the places I can put Arden's insulin pump for the day of surgery. Which of them would you like it on? Now, let me tell you a secret Jenny. It would no matter which one it was on, I was actually giving her something like, do you know what I mean? Like, I do the same thing in 504. It's like, I find something in a 504 that I'm like, well, we don't need that anymore. And when I go into the meeting, the next year, I give it back like it's a present. I'm like, Oh, you know what? We don't need this line anymore. Take that out. I'd like to make this as easy for you as possible. Yeah, like, oh, look how nice he is. Right? So in this case, it's a little ego stroke for the doctor. You tell me what's best here. Right was arm or it was thigh. Mater. Like neither of those were going to be in their way. And I let the doctor pick. Yeah, that was it. Right. And And, by the way, double down on my maniacal thinking. I was trying to get Arden to use her arm again. And I thought he'll probably say, she'll probably say arm over thigh. So I'm just going to give her arm or thigh. she'll pick arm. I'll make her feel better. And I'll get Arden's pumped back on her arm. Haha, ha like a double? Yeah, I was like an evil genius in that moment. Uh, what is okay to let slide? And she's like, what hill? Should you die on? I think we're answering that question on the way right? Like you just you what's important to the management of the diabetes? What keeps insulin going as best as you can? So what do I do about pumps settings that I don't, I don't even follow myself all the time becoming and so so she's a fluid person, like she listens to the podcast, right? And so what happens when your management is fluid, and then all of a sudden someone wants to make it static for the situation? Right? To me, I would tell them that, I'd say, look, let's start here. If this doesn't hold it down, we might have to amp it up a little bit. And if it's too much, we might have to take it away. But I don't know, because this is a different scenario than we usually manage it. These numbers are not set in stone like Jesus, that's the that's the core of the podcast, right.

Jennifer Smith, CDE 47:13
And I think a better part of it too, is to explain in a more simple way, maybe to them. This is the baseline that we work off of based on what's happening with glucose, because we've got a trend on our fancy CGM. I can because the pump settings, the smart features of my pump, allow me to do this, if, if his blood sugar is starting to go up, I'm going to do something that temporarily allows me to just stop, I'm also going to temporarily adjust down in this scenario. So explaining that in the simplest way that you can help them to see that what's there as settings, is it's meant to be fluid. You know, it's these are what we start with, and, you know, in the in the case of something like the carb ratios, you know, she's like, well, then carb ratios are a little bit more of a suggestion. They're really not something that we 100% hard number go off of, you know, what, if in the emergency room, you get to the point that they're bringing you food, and your bolusing? You know what, you give them the ratios that are in your pump, and you do what you know, works. What they will usually ask for is what dose Did you give, because they need to put that in the medical record? Right? They don't know that it's been adjusted or adjusted down based on you know, whatever you say, this is what my pump suggested I take this is what I'm taking adjustment up or down that that's a piece that quite honestly, they're not really going to care nor know about. I mean, when I was in the hospital for both post deliveries of my boys, the nurses every shift, they would ask what is your bazel running at? Have you made any adjustments? Where's your blood sugar? Have you taken any boluses? Have you eaten? all they needed to do was really document what was going on? That's it. There's

Scott Benner 49:10
a lot of but covering going on?

Jennifer Smith, CDE 49:12
It is a lot of covering? Exactly. 100%

Scott Benner 49:16
Yeah. And so even if you're MDI, that's really the same advice like, no, if she does make the point that they like to give like a set dose? They do. Right. And so, you know, but then that kind of leads into one of our other questions. Is it ever a good idea to just do things on your own and not tell the staff? And I would have to say, I mean, no, but but probably

Jennifer Smith, CDE 49:42
in some of it is a little bit of like, coding an answer, right? Like I said about the bolusing. Right. It's is it ever a good idea to do things and not tell the staff not to not know, but if you're bolusing for a meal and they ask you Did you go Less or to have you taken any corrections or whatnot? I mean, the simplest answer yes. And this is what the dose is. That's kind of the level that they need. They don't need to know that you factored in. Well, it looks like his blood sugar is dipping. So I adjusted back by this much. They don't, again, too much story, right? They don't need to know that.

Scott Benner 50:19
They're long,

Jennifer Smith, CDE 50:20
because they don't have. Right and then they start thinking, I've got a crazy person who's like just giving willy nilly doses of insulin. I don't I don't agree with it. Let's shut the pump off.

Scott Benner 50:30
Yeah, it might seem disconnected. But you know, when you hear a late night talk show host make a joke about diabetes. And you think, how could they possibly do that? When I know all of this stuff about life would die? They don't know, that's the answer. The answer is they don't know any of that stuff. And so these people you're talking to very well may not know most of what you're saying. So listen to what Jenny's saying. I've said it one way, she's saying it another way, get them to do what you need them to do, if they say five units, because that's what we do. But you know, it's six, and maybe it's okay to do six, if they want to do five, and you think it's 15, that you're probably gonna have to say to them, right, because you're crafting your own safety, that's what you're really doing, right? You're trying to protect your safety against your blood sugars. And going high is how it feels most of the time. But the truth is to, you would need to protect it from going low, you would not want to give yourself way more insulin than your doctor knew about. Because if you did get low, that we wouldn't know how to eat it. Yeah,

Jennifer Smith, CDE 51:30
exactly. And you know, for some of the MDI users that I've worked with, and a very good friend of mine, some don't even really have a true set ratio as a dose to use. And I think you had done this for a while, too. It's like, you can look at a meal. And you can say, like, my good friend, ginger, she can look at she knows her apple and her peanut butter is this many units of insulin. This is what she takes for it all the time, unless her blood sugar's higher, or lower or whatever. But this is always what she takes for it. That's not really a ratio, Could she figure out a ratio to tell them? Sure, right? She could. But technically, there's no ratio there, because you've just figured it out. Because they're standard foods that you eat. And you know that five units or two units or 12 units always works for it.

Scott Benner 52:17
And so when you're not ginger, or you or me, or maybe a lot of the people in this podcast, what do those people do, people really don't understand this year about their diabetes, are you just in the hands of that,

Jennifer Smith, CDE 52:29
and that's where these protocols are put into place, with the expectation that the medical staff knows best, and that the people coming in, aren't taking that type of level of care for themselves. So they have protocols, they've got these, if this, then do this, if this is where it is adjust by this much change to this, add this, plug this in whatever. And those are safety protocols they are. But I think from the staff position, or the medical, you know, person position, you do have to look at the individual, you have to look at the person who like you comes in with Arden and says I got this, I'm following it, we do this, we do it this way. I know where things are. She's beautiful, she's level, I can manage it, versus the person who comes in and can't even tell you the last time that they took their insulin, or what their rates are running at in their pump. Okay, that person baby, the kind that one, the staff should then get an endo consult in and to the staff needs to follow their protocol, because they can definitely say this person has no idea what they're doing.

Scott Benner 53:44
Maybe that would be a wonderful opportunity for somebody on staff to help that person, you know, because at the end of Arden's initial emergency room visit that I mentioned, as we were packing up and leaving and getting ready to go home and everything the nurse did come in and say, I really appreciate all the help. I hope I was good. You taught me a lot today. Mm hmm. You should understand, though, the way you and I started today because it was a little contentious at the big Yeah, I just tried to stay away from it, because 99% of the people I see in here don't understand their diabetes in any way.

Jennifer Smith, CDE 54:18
Right. And the majority of people she sees that come in are likely type two, and have had much less education. Even if they are on insulin, have had much less education than somebody with type one.

Scott Benner 54:33
No, of course. I mean, so it's just in to kind of go on the side of the doctor for a second and talk about it from their perspective. You and I talk to a lot of people in our private lives who are constantly raising and crashing their blood sugar's like all day long, but by what they're doing, they don't realize that they think it's happening to them, but they're doing it, you know, and they don't know what they're doing. And what if I get you into a situation where you have multiple units of insulin going? And your blood sugar's crashing? You want to have a seizure here at the hospital and in front of the nurse who doesn't particularly understand it to begin with, like, you know, but then you know, you have, you just have to understand their perspective, and not just understand it for like, you know, nicey understand it, so that you can tell them what they need to hear, like, right, like, you just, I don't know a better way to say it when you're, you know, when you're arguing with your spouse, right? And you in your heart, you're like, why are they not hearing what I'm saying? It's because they think differently than you think. But if you understood how he thought, or vice versa, you could say to him, the thing that would put him at ease, and help him understand you. And that's what you're trying to do here, you're trying to communicate on a better level than we all communicate on most days. Right? That's all

Jennifer Smith, CDE 56:00
right. And, you know, when I worked clinically with an endocrine group, in DC, at our hospital, we actually worked with the emergency room staff to develop a protocol for both type one and type two diabetes for when somebody was admitted to the emergency department. And we also had a protocol within the type one. If somebody came in on an insulin pump, it was an automatic endo call. They got somebody there. And if the endo couldn't make it, which was most often because they were busy, one of us the CDs got called to the emergency room to help the ER Doc's manage. So you know, not all hospitals obviously have that. But we did it mainly because we saw the need, we were getting called so frequently to the emergency department to manage that they were like, well, let's just get something in place. So we better know what we're doing, and when to actually bring you guys here,

Scott Benner 56:58
right? That's a it's a it's not an easy fix. But you're just ideas that hopefully some of them will make something better for you or the conversation or your health. It's, there's no, there's no like, do this, this and this, and now we're going to be okay. After the song got posted online, I actually sent me a follow up question. And it was from another person. And the idea basically was, what if you're an adult friend of a person who has diabetes, and is not capable of talking, right, can't speak for themselves in the moment? Like, is there a way to advocate for them? I mean, as I read that, I thought, that's a wonderful idea. I just mean, if you're not a blood relative, first of all, you can't, they're not going to listen to you to begin with. I mean, they might listen a little bit, but what are you even going to say you don't understand their diabetes, probably any better than?

Jennifer Smith, CDE 57:50
Right? I think the easiest, the easiest way to advocate then would really be to ask the emergency room staff, if they could get an endo console consult, quite honestly. Because you know, you can, if you know your friend well enough, and hopefully you do, if you're taking them to the emergency room, you haven't just met them on the street corner, and you know, took them in or whatever, this guy passed out, and I decided to help you. It looks like he's wearing this pager with a tube. And I'm not quite sure what that is. But But you know, if you're enough of a friend, bringing another friend to the hospital, you would, you would typically know that they've got a pump, or that they use injections, you may not know how they use it, but you could at least say hey, you know, he or she has the pump on here. He or she wears and uses this thing that tells them what their blood sugar is, you know, those kinds of things would be easy enough to be able to share with the staff at least

Scott Benner 58:52
Yeah, I think instead of trying to find a way to talk to the friend, we have to be talking to you listening who has diabetes, you you have to as crazy as it sounds, you probably have to try to break down your diabetes into six bullet points. And explain that to your friend so that they have that information to ask somebody, listen, you've all been diagnosed, right? And someone downloaded an hour's worth of talking into your head and you got home and went Ah, so you know, like your friend over you know what dinner once in a while when you mentioned your blood sugar. That's not how they're gonna do. But if you had a bullet pointed like five point lists, like make sure they know, this is what my basal rate is. Make sure they know you know that I'm MDI and that means I inject my slow acting insulin and my fat there are two different instant like that kind of like simple stuff, like break it down into t shirt slogans for Yeah, right, exactly.

Jennifer Smith, CDE 59:44
Then even even when you change therapy, then it's important to share with them, Hey, I'm not using injections anymore. I'm using an insulin pump. Even that as a simple statement can be very helpful within those simple bullet points. So, do this, or do this, if I behaving this way, you know, help me this way, whatever, that just the other day I brought up with my husband in the, you know, couple of years that I've changed over the type of pumping strategy that I use. I, my husband was very good with my other pump. He knew how to push the buttons and how to do everything. And since I've changed over, while he knows what I'm doing, the button pushing and stuff. I've never gone over with him again. And just the other day I was thinking, I really need to like reteach him. Yeah, all of this in case of need,

Scott Benner 1:00:39
you know, I really do. Yeah, hundred percent. Jenny, we've done it again, I really believe that this

Jennifer Smith, CDE 1:00:46
is a good episode in a really great awesome that you're, Miss misty, decided that it was a really good topic because

Scott Benner 1:00:55
it was hard for her to do. Really, super, actually. That's what I like about Listen, all of you listening are terrific. You know whether I've ever met you or I'll never meet you, or you'll never say a word to each other. But I've gotten to meet some of the people online a little closer. And it's really wonderful like that Facebook group is little more than a couple thousand people who really understand what's being spoken about on the podcast. So when new people come in, they're really helpful. And I just put a post up the other day where I very proudly said, no one's ever been banned or deleted from this place. And even when they when they don't disagree as much as they think they have conversations. It's really lovely. Actually, that's nice. Yeah, it's wonderful. You can actually talk to people you don't know who disagree with you and not yell at them.

Jennifer Smith, CDE 1:01:44
And it's still okay.

Scott Benner 1:01:45
Yes. So do that while you're at the hospital. Awesome. Let me say this right, before I let you go. Yeah, I don't know that most of what we just said here today does not apply also to when you're in your general practitioners office. Right, like the idea that they probably don't understand as much about your diabetes as you hope they do. Correct. Right. So don't make that assumption. I think I think that's really it. Like, don't assume anyone understands. And, you know, and if you're an adult with type one, and you're worried you're going to be in the hospital by yourself, make that bullet point list for yourself and keep it keep it on you. You know?

Jennifer Smith, CDE 1:02:21
Yeah, absolutely. Even. You mentioned the, like the iPhone with the notes or the you know, the phone with the notes and whatever. I know some people even use, I know iPhone has the the swipe screen that you can actually have your medical ID right up there with all of your information within that medical ID. You can put it right there. Right. In the Health app. Yep.

Scott Benner 1:02:43
Yeah. And again, for all and please don't take this the wrong way. But for you type A lunatics be brief, okay. Yes. doesn't need to be a dissertation. Right. Then one time when she was six, okay. The doctor stopped reading when they got to that

Jennifer Smith, CDE 1:02:59
planters war that I treated this way. 40 years ago.

Scott Benner 1:03:03
My blood sugar was a little higher during that week. And I really think that plantur word infer a medicine is what was so please keep that in mind. I don't have one now. But I mean, say I'm unconscious for four or five months here at the hospital and I develop planners where you decide to take it off for me, I really want you to keep in mind what happened to me. 40. Yeah, just keep it simple. What do they say kiss keep it simple, stupid, right? Like, I don't think they're calling the person stupid. They're saying super simple. And there is a way if you think about it. And if you listen to this podcast, really, you probably have it now. There's a couple of simple ideas that will keep you within a reasonable range and safe. So right tell the doctor that stuff. All right, or just don't get sick. I say is my nose is stuffy this

Jennifer Smith, CDE 1:03:46
year. So it's harder to do that than other years Really?

Scott Benner 1:03:50
100% right. There's a lot going on.

Jennifer Smith, CDE 1:03:52
There's a lot of illness going on. So

Scott Benner 1:03:54
I'm gonna tell Jenny, a really gossipy story that you guys don't get to hear so goodbye. A huge thank you to Jennifer Smith. Don't forget you can check Jenny out at integrated diabetes.com. And to the sponsors of this episode Dexcom and Omni pod, please, please, please get your no obligation. absolutely free demonstration pod sent to you today by going to my Omni pod.com forward slash juice box and then roll right around to the dexcom@dexcom.com forward slash juice box. There are links to all of the sponsors. So not just on the pod index calm but also the Contour Next One blood glucose meter and touched by type one.org right there in the show notes of your podcast player. And of course at Juicebox podcast.com. I'm sorry about my voice. I'm trying. I actually have to go to Atlanta and speak next week. Don't freak out Atlanta. I'll get this fixed. I need a band aid for my uvula. Hey, there's a giveaway going on on the blog. It's ardens de.com. Scroll down a little bit to recent articles. I have one brand New Omni pod pullover it's really super nice and soft. It's given to me for Arden and she never fit in it. So we just found out the back of the closet super nice. There's pictures there. It's a lady small, but if that's your jam, actually, it's a lady's extra small. So if that's your jam, go check it out. Real simple to enter. One of his gonna win it might as well be you. It's been a while since I've said this. So let me just remind everyone who may be newer to the show. The diabetes pro tip series began back in February of 2019 and Episode 210. And in my estimation, these pro tips should really be listened to an order. The first one number 210 was diabetes pro tip newly diagnosed are starting over at Episode 211. We get to all about MDI, at Episode 212. All About insulin. Episode 217 is about Pre-Bolus Singh. There goes my voice. Episode 218 Temp Basal. Episode 219. Insulin pumping to 24 mastering your continuous glucose monitor. Episode 225. bumping in nudging blood sugars to 26. The perfect bolus 231 variables at Episode 237. Jenny and I talked about setting basal insulin. That's what about getting your basal rate right. Episode 256 diabetes pro tip, exercise 263 fat and protein. I bet you didn't know you had two bowls for fat and protein go find out about that in 263 then Episode 287 diabetes protip illness injury and surgery Episode 301, glucagon and low blood sugars and then of course today 307 emergency room protocols and there will be more. Check them out. The feedback on them from listeners is really terrific. I think there'll be an abundance of help to you. I hope you have a great day. Thank you so much for listening, and for sharing the Juicebox Podcast with others. I'll see you next week.

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#306 Hungry for More Joy

Same shoes, different country

Agi is a type 1 from Hungry and her story proves that diabetes is the same no matter where you live. 

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

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello, everyone, welcome to Episode 306 of the Juicebox Podcast. Today's show is sponsored by the Contour Next One blood glucose meter, you can find out more at Contour Next one.com. There's even a form there to fill out the Find out if you're eligible for an absolutely free meter. And the show is also sponsored by my favorite diabetes organization touched by type one. You can check them out all day every day on their Facebook page on Instagram, and it touched by type one.org. If you can't remember those links are available right in the show notes of your podcast player and at Juicebox podcast.com. Yes.

Today's episode, I'm going to be speaking with Aggie and she is 23 years old from Hungary. Don't worry, she won't speak in Hungarian. That was the only time she'll do that right there, where she said, You're listening to the Juicebox Podcast, or something very close to that. As far as I can tell. We're gonna get started quickly here. But please remember two things. One, I don't keep the guests biggest revelations till the end of the show on purpose. But it did happen today. So remember that. And also remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Or being bold with insulin. I just got back from Dallas, right to talk at a type one event and I'm exhausted. So I'm expecting the ads to be completely ridiculous. I apologize. Now to Contour Next One, and touch base I've been put anything of that getting out of it. By the way, worst travel weekend ever. I will tell you about it sometime soon. Really, really upsetting the music. And I'm done. sounds just like that doesn't.

Agi 2:11
To make things easier. You can call me Aggie because it's more international. So and it kind of fits my name. Economics is my full name Agnes, in Hungarian. But I guess mine I like it. And I call myself that in English. So yeah. Hello, I'm Aggie from Hungary. I'm 23 years old. I'm a production planner, and a food engineer. And I have diabetes since I'm five years old,

Scott Benner 2:46
five years old. Okay, normally, I would make some stupid joke about math. But instead I want to know what a food engineer is?

Agi 2:54
Oh, well, it's kind of complex, because you can work visa. Food engineering really like producing new kinds of foods. But these days, that's really possible because we have all kinds of foods you can work with improving the technology, or supervising the technology and stuff like that. But I had an opportunity to work as a as a production planner, which is not really a food engineer job, but I work in food industry.

Scott Benner 3:32
Gotcha. So production planner, like the overall how things are produced on an assembly line or you know, that kind of an idea.

Agi 3:43
I'm from an office and I schedule the production and check if we have all the necessary raw materials for that. Gotcha. For sure.

Scott Benner 3:52
I'm, I once met a woman who was a chef who worked for, I don't know, like one of the companies that makes processed food like something you would want buying a bag, add water and a tablespoon of butter to and it would be a casserole. And it was her job. It was her job to put the ingredients in that like that dry concoction that you get in the bag to make it tastes like what it was supposed to taste like when it got to your table. It's really fascinating.

Agi 4:18
I'm part of that actually.

Because

I don't have producing the stuff that goes into the box straight and to the shop for the customers. But a business to business solution for the other big companies who produce that

Scott Benner 4:40
it's crazy. You're young too. How did what did you go to school for to get that kind of a job.

Agi 4:45
I live in a university city. And

here we have a really good relationship with companies and there was a mentor program and I Back in it, and they said that IQ went, why don't you come and work for us? And I said, Yes, of course. That's, it's amazing.

Scott Benner 5:10
So I have to ask you, because I'm in New Jersey, and making a podcast about type one diabetes, and you're in hungry. So how did you find the show?

Agi 5:22
Um, about executive a year ago, I found it. And it was due to the fact that I wanted better control. And I wanted to find people who are in the same shoes as me, because here in Hungary, we have a really conservative system. And there are really good doctors, really. I love my uncle, and he's doing a really great job. But at this point, as I'm listening to your podcast, and finding out what works for me, it's really like, Hello, how are you? How are you doing? And then, Okay, see you in three months. That was the that was the whole idea to do find new ideas and prove that I'm not silly. And we can do better. And and not just sticking your finger? I don't know, seven times a day. And that's it. So yeah,

Scott Benner 6:31
so it's fair to say that you were living I mean, you've been living with diabetes for a very long time. And but, but more so as an adult, now you started thinking there has, like you're seeing things and thinking there has to be more to this than what this endocrinologist is telling me.

Agi 6:45
Yeah. Um, so I'm actually from a small town where we don't really have opportunities. And the whole country is behind diabetes technology about, I don't know, let's say, three to three years, which is, in these days is quite a lot, because we are advancing really fast. So the latest Dexcom sensor we have is the g4.

Scott Benner 7:18
Okay, do you have a feeling for when you get an update? Or is it just happened and you don't really hear about it, it's just there one day.

Agi 7:27
Um, I have an animus bond. And with that, there goes, the dexcom, g4, and I tried it once. But it was just to adjust things and to see trends, but just for a week,

Scott Benner 7:43
so that they gave it to you like a loaner to just to so you could kind of get your big Oh, that's kind of mean, isn't it? To show you what it could be like with the CGM, and then take it from you.

Agi 7:53
Oh, it was kind of frightening because I had. So I always thought I had fair control. And we the CGM. I saw numbers that I thought it's crazy. Like, I'm in the different blood glucose measurement area, but I can translate some of it because as I'm listening to a podcast for a year, I kind of used to be

Scott Benner 8:22
I'll pull mine up too. So I have it. So a guide.

Agi 8:25
So, um, after meals I used to have, I don't know numbers like 381. Almost. And when I measured

just in some points I had,

I don't know 120 100. depends on the situation, you know. And when I had the CGM, I was I was frightened, like, where do these come from? And what are these? And at that point, I was on the farm for three years. And I just didn't get it. And my he wants to be number events under eight. So I know that's the solution right there. But it's just,

Scott Benner 9:14
yeah. How do you figure out the rest of it you what you had happening was, you were counting carbs, putting insulin in or waiting three or four hours or whatever testing again, and being like, hey, my blood sugar is 120, which we're gonna call What about 6.7? For you?

Unknown Speaker 9:29
Yeah, yeah.

Scott Benner 9:30
And it all seemed exciting. And then they put the glucose monitor on you and you saw that what like 90 minutes after you ate your blood sugar was 16 and a half, right?

Agi 9:38
Yeah. And I wasn't Pre-Bolus thing I thought, like, I sit by the table, take my insulin and take my first bite, say Mini. And it was just crazy. Because I'm here they tell you that this incident is super fast acting like like that's, that's the Turn it fast acting. And like, yeah, you just have it. There you go. You can do whatever. And

Scott Benner 10:09
did you listen to the pro tip series when Jenny Smith said that that's the worst thing they could call that insulin is fast acting. Yeah. Yeah. Because it gave you that gave me that feeling right? Like, yeah. push it push the button, and it works.

Agi 10:22
I love my she, when she said those things out loud. I was like, Oh, my God, it's totally just saying, and I just don't know why I haven't figured this out earlier. I knew the idea of Pre-Bolus thing before your podcast, but I tried experimenting really well, when I got stuck with with your podcast, because I started a year ago. So I had quite some episodes to catch up to so yeah,

Scott Benner 10:54
did you listen all the way through?

Agi 10:57
I'm not sure I would say I'm at about 80 or 90%. Because I had some episodes that which I couldn't really relate to. Like, it was just not that interesting from my perspective. And my, my country because I sometimes just realized how, how different parts of the world are we? Because we don't really have these educators you have, you only go to your endo, and you have an assistant as well. You can talk to, but really, that's all. Yeah, do you

Scott Benner 11:40
know any people in real life that have type one people who live near you or friends or acquaintances?

Agi 11:47
I have a best friend with diabetes, but she lives far away. Because we have a serious fan count here in Hungary. And I was there when I was a teenager. And it was really great, because it wasn't about diabetes. It was about

you can do anything.

You have and you have diabetes, but that's not a big deal. Yeah.

Scott Benner 12:19
So so you guys met each other? I can't How far did you have to travel to go there?

Unknown Speaker 12:24
Oh,

Agi 12:26
it's about so Halloween is not a big country. So there are not big distances. The camp is actually around 150 kilometers

Scott Benner 12:41
from you. And you guys, do you guys keep in touch through social media.

Agi 12:46
Um, yeah. And once we had separately a holiday in Prague, and accidentally we met there, so really just

Scott Benner 12:57
each other in Prague?

Agi 12:59
Yeah. Like, I traveled to Prague with my boyfriend. And I posted it to Facebook. And she said, Oh, my God, I'm here as well. And I like it was not scheduled at all. And it was really fun.

Scott Benner 13:17
That's amazing. That really warm. Well, I am. So but so when you make that decision that day, like I need to find out more. What did you imagine? Like? Did you just as a younger person think I'll look for a podcast? Or did you find it on like Instagram? or How did you I can't figure out how you even learned of the existence of this.

Agi 13:37
I I really love to Google things in English because I feel like Hungary is a bit back in technology. And I just wanted to know what the stuff was. What people do anywhere around the world. What could be available for me? Is there anything others do different? And as I as I searched through the internet, I just my boyfriend told me that he listens on podcast about coffee and stuff like that. Like, that's so dumb. Why I wouldn't listen to a podcast with diabetes. And you were the number one in my search bar. And then from there or beside the court. It was a collection.

Scott Benner 14:27
Yeah. Well, I'm also glad to know that you think that a podcast about coffee is stupid. Because I think you're right about that.

Agi 14:34
I need I love coffee. I love coffee and coffee is my life. But this weekly podcast about coffee sounds a bit silly to me.

Scott Benner 14:46
To figure I'm gonna find out what you talk about on the podcast about coffee. That's, I mean, this coffee's hot.

Agi 14:53
No actually eat so it's really a food engineer stuff that makes me

Scott Benner 15:00
sense, okay. Yeah. I was just thinking like, how long could someone you know, wax poetic about coffee before I got bored? I think it's about 18 seconds. Of course, there's probably people listening now there's like, you're pretty boring too. So I get it.

Agi 15:13
I think it's a bit different coffee culture we have here that new because we have, um, I don't know, the, the English term for that. New ways. Yeah. New Wave, new wave, kind of. Yeah, I think that's how they translate it. And it's different brewing methods and roasting methods and stuff like that. It's kind of interesting, but I wouldn't listen to it. How would

Scott Benner 15:45
you have said new wave in Hungarian?

Agi 15:48
We will Amash.

Scott Benner 15:50
That's what I'm gonna call the episode, if I want to have to get you to spell that for me later. But, but that's not so. So you're you're you start looking out in the world. You have an animist pump, and no glucose monitor, but you had the you had the information from this one week that the doctor gave it to you? Do you have a glucose monitor now?

Agi 16:13
Yeah, for one year. That's exactly how I, I bought the CGM. And I started to listen to your podcast the same time. Wow.

Scott Benner 16:23
But you are you paying for it cash? Or how does? How does reimburse? Oh,

Agi 16:27
we have we have absolutely no money from the state or, or insurance or anything for that. But you can write to the state. And they might give you some or all of the money for the sensors. It's all up to them. How many? And if they exactly did you do that? I'm actually I started this process two months from now. I didn't want to start it. But at the end of the year, because they are all out of money. And you have to wait to start the process again. Because it's not like No, we won't give anything to you. But please give me so it's it's not worse like that. So I waited out for the beginning of the year. And I know I'm currently waiting for the results.

Scott Benner 17:29
Are you hopeful that it'll work out for you that you'll get some reimbursement?

Agi 17:33
Um, yeah, because I've worked down my one fee to 6.5.

Scott Benner 17:39
Congratulations. Where was it a year ago?

Agi 17:44
A year ago, it was 8.7 or something like that.

Scott Benner 17:49
Thank you. Good job. Congratulations. That's amazing.

Agi 17:54
It's it's part of your job as well, because I think I had it in me, but you just told me why the fuck is that? If you feel like it, you should do it. And yeah,

Scott Benner 18:12
it's so wonderful. Don't make me

Agi 18:14
you have. You have a big time. I was talking about you with my mom. Because in my family, my mom is my caregiver. And my dad could do the stuff but really, it was just like firefighting, like mommy's not home. Let's put in 50 grams of carbs with five units of insulin and hope not to die.

Unknown Speaker 18:41
That was your dad's that was your dad's theories.

Agi 18:43
Um, my mom gave me the manuals.

Scott Benner 18:48
We arted I'm beginning to try to understand looping with Arden

Agi 18:53
that Oh, I'm I'm just so jealous. I'm so jealous. I love this stuff. Because I have Medtronic and licensors with my old animus pump. And I'm just if my cell service a bit better, and, and I had on the thought or, or the dum dum or something like that. I just want something that I have. I have a good glucose monitor. And with that my pump would do something. I don't know loop is a different system, but like tandem has the new baseline. Yeah, yeah, yeah, yeah.

Scott Benner 19:33
Yeah. Well, I, I was gonna tell you that I put it on art in the first time and I really don't know what I'm doing. Still. I'm still teaching myself. So we put it on and, and she's like, what do we do now? I'm like, well, we close. We close the loop and let it start working by itself. And we she pushed the button and I looked at her and very sarcastically with my eyes. I don't know if you can imagine being sarcastic with your eyes. I said, Good luck. And she started laughing. She's like, What do you mean? I'm like, I have no idea what's gonna happen. She's like, Am I gonna die? And I'm like, probably not. She, she did not die. She's doing okay.

Agi 20:04
I love Junebug. And, and I love their stories that night first new but

loopy down the path from them on instacart.

Scott Benner 20:12
You know, Junebug through Instagram or from the podcast? From podcast. Yeah. She'll be thrilled to hear that. That's very nice. Well, I want to go back to your mom for a second when you go to your mother, who I assume has been helping with your diabetes your entire life. And you say, I found a stranger on the internet from America. And he helped me get my agency. Two points. Is she happy for you? Or is she mad at me? What's going on? Exactly.

Agi 20:37
She's just, I don't know, do your stuff. Kind of attitudes because I'm, I've been doing this alone for six years. So six years on the pump. But previously with the past, I was kind of alone but we were discussing it. But she never never said to do something differently. She just suggested that maybe you might want to give an extra half unit or something like that. But not not. Not like I text her and she text me back like you do the dog does not

Scott Benner 21:15
you don't send your mama notices mom. I'm having some board share and I need to know how many units this is, you know, happens and is borscht in any way something you eat and hungry.

Agi 21:24
My my favorite thing in your podcast? I don't know actually what the kind of stuff you're talking about. So we don't have my favorite part. I don't know which episode this was. Like, when Arden texted you that she wants to eat a muffin. And you asked how big is that muffin? I don't know. It's big. I was laughing because I'm still counting cards.

Scott Benner 21:50
I'm glad I'm glad you thought it was funny.

Agi 21:54
And I was like, What the heck. So if I even see this muffin, I don't know what two bowls I would figure it out. But, but I would just scratch my head for

Scott Benner 22:08
understand. Give me one second I have to do something real quick. I'll be right back. Sorry. Okay, everybody Listen up the Contour. Next One blood glucose meter is going to help you navigate diabetes management. This is a highly accurate and easy to use meter. It has its own unique smart light feature. It instantly shows if blood glucose is in target range. And that will definitely help you to make treatment decisions.

We all know that the age of smart diabetes management is upon us. And by integrating your blood glucose meter with a smartphone app, you can simplify the management of your diabetes. And the Contour Next One allows you to do just that. Blood Sugar results are captured throughout the day, and can be automatically synced and logged. Over time, your results may create meaningful insights into how your activities affect your blood sugar level, which can help you improve your understanding of diabetes. All of this while being on the same platform that you use for so many other aspects of your life. That's right, right there on your smartphone. This is for Apple or Android, you got to go to Contour Next one.com to check it out. When you get there at the top, there's a yellow button says get a free Contour Next One meter, not everybody's eligible, but you very well maybe. So that's worth looking into. Also while you're there. Listen, here's what's really important. My daughter uses the Contour. Next One, it is terrifically accurate. It is easy to carry just works. And the test trips allow you to miss the first time and you can miss with a test trip and go back for more blood without messing things up. Contour Next one.com are the links in your show notes with links in your show notes or Juicebox Podcast with the links in your show notes. I am going to get this right. Contour Next one.com with the links in your show notes with the ones you'll find at Juicebox podcast.com. I'm so tired. I'm not editing any of that out. So I don't even care if there's any music. You got to check out touch by type one.org it's dancing for diabetes, they changed their name, but they did not change their mission. You have to have to go check them out. Definitely go look brand new website. They're still on Facebook, they're still on Instagram. They're still my favorite organization. I think they might be yours too. All they're looking for from you. Is a What's up, just go take a look touched by type one.org or look for them on Facebook or Instagram. Just pretend the music was playing there. Didn't didn't didn't do this, though. Let me just tell you for a second. I don't want to take a bunch of your time. I don't want you to forget Aggies accent and have to rehear it over all over again is really what I'm worried about this guy too long but flights are terrible. Hotel thing was a mess. Got that fixed, huge headache the first day, come home, blah, blah, blah. Here's the end of it, left my iPad in the seat back of the plane, lost my iPad. my iPad is gone. I tried to do something nice in the world. And for my trouble. The world took my iPad, or I was just exhausted and I forgot it there. Anyway. Don't cry for me. I'm fine. my iPad of course is lost. It's probably sad somewhere right now. Do you think it's just like, Scotty just left me there and then this guy picked me up. I don't even know this man. Always touch my button. I don't know. Probably not right. It's just an iPad. Your comes Aggie seriously. She's doing terrific on the show. And she really picks up steam and hits a real a real heartwarming note at the end. I hope you guys all appreciate it as much as I did. Back to the show. That was I don't know if you could hear that through the microphone. But I'm watching Arden's blood sugar through nightscout because she's looping and, and I can see what the loops planning on doing and how it's adjusting her basal rates and stuff. And of course today about I guess about a half an hour ago now I texted her I was like, how come we're not you know, bolusing for lunch? What's going on? She goes, they moved my lunch today to later. And I thought, Oh, well, great. Like, you know, like, well, I don't think ever tell you that stuff. So So her blood sugar's just dip down to 65. Now I can see that the loop has completely dialed back her bazel it's completely off right now. And I imagine from the path it's taking, I don't think she's gonna get much lower than this.

If lower at all, I just don't know when she's going to eat. So I'm going to kind of let it ride for a little while because I'm learning how it thinks right now. And if that makes sense or not. But I'm interested, I can't wait to see we'll find out together. I'm hoping not to have to have her drink anything. She hasn't had a juice in like 12 hours. This, she got up this morning. I looked at the loop when I woke up later that she had had a drop her blood sugar tried to get low around 5am. The Loop stopped it and brought it back up. And then the dawn phenomenon kind of hit her as she was about 6am when she was waking up and I watched the bazel Come on and squash it and keep it level. She woke up exactly at 100 and went to school about 45 minutes later, walked right into a math test. I saw the adrenaline hit her from the math test the loop squash the adrenaline, she never went over 124 then she came back down into about the 96 range and rode there for like three hours. And now she's 65. But in fairness, she's that food she ate this morning. Oh, by the way, around nine o'clock, she decided to have a churro which I don't know

Agi 28:00
something you know what that is or not? Um, I know that.

Scott Benner 28:03
Yeah. So she's like, I'm gonna have a churro. And I was like, whatever. So it took care of that. No spike. But now the churros clearly gone out of her system. And she hasn't eaten now for a couple of hours. So this is interesting. There's no food in or whatsoever. I'm, like, can't wait to see what it does next. Actually,

Agi 28:17
I I'm really, I can't express it. And I don't know, what point will we decide to Oh my God, we need to catch up to America. Like they have the G six now. We have to do something, it's something

Scott Benner 28:33
and who would you? Is there a government entity that you could reach out to and say, hey, look, there's like, why are we not working harder to have up to date technology for ourselves?

Unknown Speaker 28:45
Um,

Scott Benner 28:46
could you become like a diabetes advocate and hungry

Agi 28:51
there are a lot of people working on

getting reimbursement on sensors. I could be a part of it, but I do it in in a in a smaller level. I'm trying to help other diabetics and and then their current options and it's not my thing to go to the government and do stuff but but I have done and whatever we need to do to to join them and and stand behind that. Stand behind them. I'm there.

Scott Benner 29:30
So are you are you like my satellite office in hungry Are you are you Yeah, so you're selling that you're selling the podcast over there. Thank you very much.

Agi 29:39
I'm trying but um I don't really have that many diabetics who speaks English as good. So I'm trying to give the information and the ideas and I show that what works for me and and what I do. And yeah, it's part of your your podcast. But I, I know more parents who have smaller kids. And I talked to them. And when I like my best friends here in Hungary I tell them ideas and anyone who's Carrie Korea sexually, I am part of Hungarian diabetic groups, stuff like that in Facebook. So

Scott Benner 30:29
that's trying to get the word out. Do you find people resistant to the idea of how you're handling things? Yeah, yeah.

Agi 30:38
And not just that because I'm. So I'm pretty lucky to have a job from where I can afford to buy a CGM. It's it's really costly here. For Kids, it's almost 100% that they will get the reimbursement. So I try to become

Scott Benner 31:00
an adult, though. It's on you. And yeah,

Agi 31:02
you're 18. And

I don't want to say something nasty. So

Scott Benner 31:10
you're on your own and going to go after yourself.

Agi 31:13
Yeah, yeah, that's kind of like that. And it saved me the font. So you get it for? I don't know how many dollars, but it's not a big money. It's really it's like, you could buy it in any social place you are for kids. But as soon as you're 18, it's a month of salary with 80%. reimbursement. It's, it's not. And I know, I'm in a good place, because insulin is almost free. And I know the situation in America about that. So I feel lucky that I have insulin for free.

Scott Benner 31:59
So they give you the insulin, but the technology they're not as free with.

Agi 32:03
Yeah, sounds are free and do your stuff.

Scott Benner 32:07
It's interesting.

Agi 32:08
Not even not even the test strips are free, actually. So you have, yeah, you have five strips per day, for one month, and it's about $5. So it's not the big deal. But if you don't have a CGM five finger stick is is just nothing.

Scott Benner 32:33
No, of course, the five doesn't begin to. I mean, once you've seen the CGM data right now, you now you know, five is just, it's not even close. It doesn't help you at all, I think you'd have to probably finger I think you'd probably have to finger stick in excess of 10 times probably a dozen times a day to even be begin to start understanding what it is that you're not seeing, I guess. I'm trying to figure out how big hungry is compared to like a state in the United States that people can understand.

Agi 33:04
I think it's about the state. But I don't know which because I'm not good at the American state.

Scott Benner 33:11
Let me see if I can figure it out. Hungary size compared to Texas there somebody has googled it before me, we'll go with their Google. Somebody else's Google fu hungry is about seven times smaller than Texas. Texas is approximately 678,000 square kilometers kilometers, while hungry is approximately 93,000 square kilometers. population of Texas is 25 million. The population 100 is about 10 million. Okay. So the reason I looked this because I realized I had a conversation with somebody the other day where I said something that doesn't really match reality. I said, I said if we all just lived and I forget how I put it, I think if we all just lived in I don't know a place the size of Texas. You think they could figure out how to make diabetes supplies more affordable and accessible to everybody because there'd be so fewer people that it would be easy to do. But you're in a situation like that, and it's not happening. So my question that I hope it doesn't feel insulting, but is hungry? Is it a poor country in general?

Agi 34:24
Um, I don't like this term, because

Unknown Speaker 34:27
that's what I'm saying.

Agi 34:29
I don't find it insulting at all. I would say there are very poor people who I think that are more than in the imaginative country, you would ideally just imagine, yeah, yeah. Um, there are people who are really just in a good place and they don't want To choose anything, and there are very few rich people who are reached you to the big amount of people. And I really hate this situation. Um, yeah. So I would say, have technology here, if you want to do something to advance yourself and be happier, but it's not compulsory to leave, you won't get any support. And it really cost here.

Unknown Speaker 35:35
So I gotcha.

Scott Benner 35:38
It's been a long time now. But I once went to the Dominican Republic to give a to give a talk about type one. And the one thing that threw me off by it was that I was in a hotel that was being guarded by a man with a shotgun. And then the next five storefronts going down the street were abandoned. And then the six storefront was a Ferrari dealership. And it just, I couldn't make sense of it in my head that there were people there who, you know, couldn't keep their businesses open the businesses that people needed, that the crime was bad enough that, you know, my hotel had a man with a shotgun standing out in front of it. And yet somebody, not just somebody, but a lot of people could afford to buy a Ferrari. And it just, I don't know, it never made sense to me. It was really hard to, to imagine, and those people were living on 30 test trips a month from the government.

Agi 36:31
Actually, the problem here is, I think we have way too much taxes, and we pay taxes after taxes, and there's huge there are huge taxes everywhere. Like there's a ridiculous article, in this case, like when the new iPhone seven came out. It was only it wasn't much more expensive to fly to America, buy the new iPhone there and fly back to Hungary.

Scott Benner 37:07
Hey, how much does it cost to fly to America?

Agi 37:10
I don't know. Big time.

And I was just

I couldn't imagine how how this is possible. Like?

Like, it's ridiculous.

Scott Benner 37:27
Yeah, no, that's, that's insane. And, and I take your point, it's a it's an amazing example of it. I'm looking at Budapest to New York City $500. One way, so $1,000 to fly then another, you know, $800 to buy the phone, and you'd be cheaper than just buying it there. It's that. I wonder what that is? I don't even listen, my understanding of, you know, international tax systems is non existent. But I understand living and wanting to buy something and not having it. I mean, in comparison, if if your iPhone was just the cost of the phone like it is here, I don't know, say $600 to like $800 something like that. Is that something you could afford?

Agi 38:18
Hurry, I didn't get

Scott Benner 38:21
his an iPhone, something you could afford if it was an American dollars on your salary.

Agi 38:27
On my salary, yes, but I think I leave above the average gotcha. Okay. So they are really good multinational companies here, because work is cheap here. And people who can work in offices in these kind of factories, they have good salary they live Val. It's it's not that huge amount of money that you become millionaire off. But it's just you can go to holidays, and you can have kids, and it's not not over your head every day. But I know my parents who work at home, they are entrepreneurs. But they are not. So they have enough money. They don't leave from month to month. But last time we were on a holiday was when I was a fourth grader.

Scott Benner 39:44
So not money to be running around and spending constantly on things that aren't sure the staples the things that you need food and shelter and health care and things like

Agi 39:53
that. So So I would say we are living well and we have a spare money. But it's just you, you won't pay for the extras like

Scott Benner 40:06
yeah, so I well let me thank you so you have it you have your CGM now that you're paying cash for. And and you're you're pumping and you've got your agency crazy good. Your Pre-Bolus saying and doing I guess all the stuff that we talked about on the podcast now has your life, like with diabetes become like less of your time and attention? Is it? Would you call it easier now? Or what's your experience been in this last year?

Agi 40:36
Um, morals, my attention, but more effortless. So it's like, thinking about, oh, it's gonna rain. I will take this rankles with me. So that kind of thing.

Scott Benner 40:53
So a little more, a little more pre planning. But but then your results are much better, and other things get better.

Agi 41:02
Yeah. And so I wasn't really at a good place when I started to fake things in my hand because I was pumping, but I didn't want to put much effort. I had times when I used it something like a fan. I I wouldn't adjust based on those I so the base of program I would adjust but not Temp Basal, or, or, or something like that, I wouldn't do those things. Um, then I started to use those functions on my own, with more or less success. And then I was thinking that maybe I should do something more. I have my own job. I can buy this. And maybe I won't have that many spare money, but I could buy my my happiness. My house. And that's not something you can measure with money.

Scott Benner 42:12
No, no, I agree. I think that you have to put, I don't I I don't understand what the Let me see how I want to think about how to put this. So I saw someone today say I don't let diabetes stop me. And the and then they said if my blood sugar's 500 I don't leave work. If I'm low when I'm doing something important. I press through it. And I thought that's admirable, like, you know, it is to be hit with something that's that harsh, but it's, it's something I'm having trouble describing. And I've been I've tried a couple of times, and we'll try it again here the idea that pressing through doing the dangerous thing for yourself. That's not success. That's well you know, that's being like bullheaded, which is you know, it's very valuable at some points in life. But you can't confuse I didn't let a 500 blood sugar stop me today with I don't know, something that's particularly good. It's not bad. I mean, I see their point like I didn't get a high blood shirt and go I have to go home from work or I can't go to school today or something like that. I get the point they're trying to make but I don't understand what their goal is. I guess.

Agi 43:29
I have the st. Honda stopped me from doing my work actually would imagine it could.

Scott Benner 43:33
It seems that

Agi 43:36
I had to drive home because I had Ivanka canula or something like that. I don't quite remember. I was remember I I was there at my job. I had my CGM, thankfully because when I realized I have something going on. I was I was home before it got too dangerous. Because I work in a different city. It's a smaller one than I live in and I don't really want to move there. So every day it's 35 kilometres from home to work and that's backwards as well. And it was rising and I took installing and it didn't stop it wasn't a two arrow upwards or something like that. This was just going God going up and river after lunch and I knew it's not lunch because I had spaghetti and I bought this for spaghetti like a pro like nobody bought a spaghetti like me and I knew there was something wrong and I excused myself and and left. And I was right because when I ripped out the canula It was bleeding. And because it was going down on my legs, and I never had to be there like that before.

Scott Benner 45:09
You weren't getting the insulin that you thought you were getting. Yeah. And and that 300 blood sugar. It really does I you know, it's worth going over sometimes for people slower thought process foggy brain tired, right, like describe what it feels like to be that high.

Agi 45:28
At that point, I don't had that good control for a long time. It was just the first month and I still had spike. So if it wasn't that bad, these days, it would give me a headache. And probably, I would just feel like I could sleep for a week. And I just don't have thoughts that make sense. Right? Like, in my head, they make sense. But when I say that loud, it's like, it

Scott Benner 46:08
just doesn't work. Yeah, I didn't had a um, so as I'm trying to dial in this, you know, trying to get the, the loop, right. I had one night where I just, I didn't have it yet, you know. And so she kept dipping lower. And then, you know, coming back and lower, it happened, like three, four times overnight while I was trying to get it dialed in. And she woke up in the morning, and she had what I hear adults describe as like a low blood sugar hangover. Yeah, where she just felt terrible. And the best I could tell her was, hey, we're going to eat and think in a couple of hours, you're going to feel better, like from what I hear from other people, but I'm not sure I'm sorry. And, you know, getting school go

Agi 46:52
in. So actually, actually, today is a good example for that. Because last night, I had, I don't know, an eight hour lasting low. Like, I just couldn't make it right. I ate almost a bag of glucose tabs. And it just didn't work. Like I thought I'm crazy. Like I was eating everything as if the book and as I did, and it was like eating five glucose tabs, and then go back to sleep and then check again. And

Scott Benner 47:29
just kept going back down.

Agi 47:31
Yeah, it

came up a bit. And then it was straight down again. And my insulin was shut off. And I just couldn't think anything was work.

Scott Benner 47:43
What was your blood sugar? Like where it was low?

Agi 47:47
Um, it wasn't that low. But that kind of flow, which always goes lower.

Scott Benner 47:53
Yeah, it just percent it persists and stays there.

Agi 47:56
Yeah, it was around. I don't know. 6065. But if I wouldn't keep on eating, it would go way low. I just knew. And I had my boyfriend's waking me up several times, like you're beeping again, and you're beeping again. And this was just not not working out.

Scott Benner 48:19
And you boys are always waking girls up in the middle of the night.

Agi 48:22
But I love that because I am such a good sleeper that I just can't wake up to my CGM. When I'm home with my parents, my mother came from next door. Like you should eat something because

Scott Benner 48:39
it's a lot.

Agi 48:41
I'm just there silently. And so I just don't care. So

Scott Benner 48:47
not so just for I guess, you know, just for your edification I went, there are those lows overnight, that when you bump them with juice or something, they go right back, and then they're okay. And then there's the ones you described that just persist and won't stop and you've got your base will shut off and it doesn't matter you're eating and it doesn't matter. But I think then you have to it stinks but you kind of have to get up and eat something more substantial. It can't just be like a fast acting sugar at that point. Like it needs to be something that will move you up in the in the short term but sit in your stomach for the long term. And I think that's the difference. But you know, when you're an adult and your blood sugar's you know you're in the threes for you in the fit, you know, around the 60s for us. I mean, it's easy to say get up and go do something. I'm the one who like wakes up assesses what's happened to Arden You know, I've woken myself up I'm thinking about it, then I go You know what, she needs something. I'm walking to the kitchen, bring it back to her, you know, kind of make her eat. Yeah, that doesn't

Agi 49:50
and i think it's it's a whole different thing if that's your kid. Yeah. So you take care of yourself and and you do what you need to do. But it Money, your kids health and, and life that change state because when you're low that can happen, you know that, then it's it's just you want to safer, you want to help her and you just go there and give give it to her. And actually, when I'm low at night, I can't make myself waking up so that I have reasonable thoughts about my blood glucose

Scott Benner 50:27
levels do you have trouble carrying

Agi 50:30
on at night? I'm the worst. So like, here's here are these glucose tabs or juice or something? I just grabbed the sun. And I'm asleep by the last day.

Scott Benner 50:44
Well, you listen, I, I hope that by the time this goes live for people, which will be months from now, I hope I will have taken what the loop feedback is teaching me and I hope that I've been able to expand on the ideas that we talked about on the podcast even further, because I'll give you one simple idea. Okay. So I tell people all the time, you know, use Temp Basal increases, you know, if you're going to have something, it's really carb heavy, like, throw some extra bazelon to try to, you know, you've heard me say, spread the base loud over the timeline of the that you think the food's going to be in your system. And, and, you know, all that stuff, you know, breakout extended boluses, everything we talked about here, what I'm seeing in the feedback from the loop is pretty amazing. Because you're getting low in the middle of the night. And I know it's easy. We say it all the time from something you did five hours ago, right? insulin you had at dinner time, or it's something you wouldn't even think about anymore still being an issue. But I'm seeing now that even though what we do here on the podcast works so amazing. It's it's still not as well timed against the needs of your body as it could be, I don't know how to figure it out without the algorithm, but I'm going to try. But what I'm seeing is it's amazing like Arden's you know Arden's bazel rate is like 1.4 an hour. But the loop will sometimes see her getting ready to move, and it'll jacker bazel up to four units an hour, but only leave it on for like eight minutes, and then go back, and then get and then five minutes later changes it to something else. And then it says, Oh, I put in too much. It takes some away, and then it gives some it takes them now that's not something you could do as a human being like living first, you wouldn't. I don't think you'd actually be able to make sense of the data in a way where you could do it meaningfully. And obviously, you'd like to live your life. So you can't spend all of your time just moving

Agi 52:48
around, right? I just imagined increasing my Basal for eight minutes, because animals for the past an hour and I just set the timer. That's Yes. from eight minutes from now, I will shut this thing up because it will go for it for half an hour happy. It's just really,

Scott Benner 53:06
it's, it's it's both eye opening. And it's confusing me. I don't have my brain wrapped all the way around it yet. And this is me. I'm you know, in May of 2019 talking just in case, the timeline of this gets messed up. And I talked about loop. You know, five months ago. I mean

Agi 53:24
by Hungary still has the g4 Yeah.

I feel like I feel like Hungary is Internet Explorer.

Scott Benner 53:39
You though, you're the you're the internet browser from Microsoft from when I was a teenager.

Agi 53:44
Yeah, it's like, you, you know, those means, like when somebody is just always late, and it's always Internet Explorer.

Scott Benner 53:56
You're using a pump that isn't even for sale anymore here.

Agi 53:59
Um, I stuck with it. Um, I have to switch to Medtronic because here that's the only option which doesn't cost me extra money. Gotcha. Um, I have their sensor because the g4 is still more expensive than the analyzer and I kind of know my ways around the sunlight and I know how to work together and I know when it's off and I know when it gives me a line like this, that which is kind of wonky. I have to check because it's just not that right. And then so the sensor is is okay for me. But I really want the the Gck because the light only works in my arm and I can't exert insert it without my boyfriend because it's a two hand job.

Scott Benner 54:58
I hear what you're saying. You You want to break up with this guy, but you can't because he he?

Unknown Speaker 55:04
Yeah, yeah. You need

Scott Benner 55:07
him. He's got to stay. That's it. Yeah. You imagine if you guys got into a big fight,

Agi 55:11
you have a cake together.

Scott Benner 55:15
But the kid is your sensor. So yeah, I'm joking. I'm assuming you're not thinking of breaking up. I just painted a picture in my head if you go and look, I don't want to date you anymore. But I still need you here every Thursday and Tuesday to change my. And you can't say no to this. Plus, you have to sleep on the floor and wake me up when my blood sugar.

Agi 55:38
And bark.

Yeah, we don't have diabetic alert dogs.

Scott Benner 55:43
Yeah, it would be nice. This poor guy seems like he's so lovely.

Agi 55:49
I got your analogy with the kids. Because I was thinking that I don't want to break up with my boyfriend. I thought you were saying that my sensor is my boyfriend. Like, like you, you're in a relationship with somebody who you want to break up with. But you can because you are stuck together.

Scott Benner 56:11
That's a different story. But I don't like to speak badly about Medtronic too much because they seem to get mad about it sometimes. But yeah, I heard their sensors not great.

Agi 56:18
I'm not mad about them. And actually, what they do here in Hungary is I think, the best option currently, of course, no, it's

Scott Benner 56:27
amazing that you have it.

Agi 56:29
And I support them when they need me to talk about sensors and stuff like that. And it's just not reasonable for me to say anything bad about them, because they have a big time. My life is is completely changed. Um, so I, I really recommend them to everybody here. But but we need to do see the other opportunities. And

Scott Benner 57:03
I hear what you're saying. Let me just say it right now we need Dexcom and Omni pod butts over in Europe and hustle a little bit right, make things more accessible to people. I gotcha. All right. Yeah, we thrown the gauntlet down.

Agi 57:16
And actually, I sometimes feel that, that on unimas is better for me, I know it's off. But, you know,

Scott Benner 57:30
I've never used the animist pump,

Agi 57:31
I don't want to go to Omnipod even if I had the chance, because I love that I can move my pump around my body and it's not at the same spot. Like the, like the big part of it. Like you have to start the reservoir to your skin. And this Therefore, I don't know, three days.

Scott Benner 57:56
Yeah, for me, that would be the deal breaker for you. The cubes are to be a deal breaker. It's amazing. Everybody has what makes no sense to them. And you know what, what's more important to them? It's that's why we always need absolutely always need choice, and different things for different people that work and bit accessibility is a problem for you. And, and that's just not okay. It's not a it's not okay for anybody, you know, you need to be able to choose. So, again, these companies need to get moving. I know Omni pod has people in Europe working. So hopefully they're making inroads. I know they you know, I hear from people in Australia constantly who wishes it was there. Dexcom is behind.

Agi 58:40
I would I would definitely try it out. Because I always have second thoughts on it. Like, they give you a demo button. Why wouldn't you try each out to try? Yeah, yeah. So maybe maybe I didn't want to leave the the any saline pump. Six years before I tried out the salon because I wasn't 18 it was cheaper. And I had to decide at that time. And at that time, I was like, if I decide to have this pump a year from now, I wouldn't have the money to buy it. I say

Scott Benner 59:19
to you gave it a shot and he ended up loving it. Yeah, yeah. I was gonna say earlier that everyone I've ever heard from love that atomists pump. So anybody who's ever used it has never I've never heard him say a bad word about it once so it sucks that they're out of business. But yeah, keep using yours as long as you can.

Agi 59:37
Yeah, I bought some extra supplies. And some of the candles are working with the Medtronic pump. So I will continue to use them as long as I have them and then I have to say goodbye.

Scott Benner 59:52
You really have come come a long way from your description and you talked about six years ago, you know using pens. Starting a pump, you know, not necessarily because you want it to admittingly using the pump as just like a pen, not really thinking about the extra features that it does just, you know, oh, I don't have to inject anymore, I can just push this button to a person who's thinking, you know, staying fluid with their thoughts about their insulin and making adjustments and changing their basal rates. And you've come in an amazing amount of time and distance in a short, you know, early in your lifestyle, because it's, you know, you're 20 you're 23. Right? So this is since you're 17 years old. That's amazing. Yeah, it really is. I mean, do you ever just look back and think, Wow, like, I've really, I've really come a long way with this in a short time.

Agi 1:00:40
Um, I really think this from the last one and a half, one year, okay. Because I just did my diabetes on me maintenance level.

Unknown Speaker 1:00:54
And

Agi 1:00:57
I say, Did my diabetes on purpose, and it's not language boundaries, because it was, like a job like doing laundry. I wasn't living living with it. It was beside me, and I acted when I really had to. And maybe that's why I didn't have good day, one season, I didn't have that great control. But I felt like, this is too overwhelming for me, and I cannot do this. But then I just, you know, I'm not that old. And I definitely don't want kids in the near future. But there will be a point when I want to have kids and I want to be grand rounds. And that's stuff girls think about, you know, so I just, I just wanted to be healthy as long as I can. And I realized that maybe I don't have complications. Now. Maybe my blood birds are fine. But there will be a point when something will happen. And I know that I don't have table control, but it's not good either.

Scott Benner 1:02:11
I really enjoyed the way you just said that you didn't have the diabetes is like part of your life. It was beside you like it was adjacent to you. And you dealt with it when you needed to. But now you see it as a as a necessary part of who you are. And it can't be ignored no differently than your you know, any other aspect of your health. That's really uplifting. I'm really glad you shared that with me. Thank you. I know. I don't won't really be talking about it right now. But a friend of mine has had diabetes, since we were kids since we were 16. And he passed away recently. You know, and I really think that he would have really benefited from hearing what you just said a long time ago. So I'm sorry, no, no, thank you. I appreciate that. But I think you just said something that's gonna help a lot of other people. Never be in Mike's position. So that I'm really glad you shared that. Thank you.

Unknown Speaker 1:03:11
Oh, I didn't

Scott Benner 1:03:12
mean to make you sad. I'm sorry.

Agi 1:03:14
No, no, I'm not sad. I

I was just thinking, what really made this this trip for me to make it easier to other other people who who listens to this. But for me, it was just I really want to stay healthy. Because I'm in a good relation relationship. Now I have a good job but but what does every good thing in my life mean? If I cannot enjoy it. And, and as I sorry, just just one thing. As I as I started to, to make these efforts to make my life better and make my control better, it was the worst thing in my life. And it was the hardest thing because I did everything and and I put all my effort to to make everything work. And it was just not making sense. But trust me, it will click in it's really just click thing. And you will go just as effortless as before be the best control.

Scott Benner 1:04:26
Thank you. I appreciate you saying that. Because it is difficult sometimes to explain to people that I know this sounds like a lot in the beginning but that it will become intuitive and easier and things are going to change so much you'll be thrilled that you put the effort in upfront. I'm really impressed that you did it at such a young age actually. I just feel like 23 is an age when you don't think of people as buckling down and thinking about themselves long term but it's I'm just really thrilled that any part of this podcast helped you get to that point and and i think that people listening should hear A couple of things. First of all, I hear what you're saying about I want to have children and grandchildren I want I want to live and I want to be healthy. Because there's good things in my life. But even if you don't see the good things in your life today, there are good things to be had. And you may have trouble finding them. If you're always fighting with your health, like, let's get your health in a great spot, so that you can have time for the rest of the stuff or to pursue the other things that you don't have.

Agi 1:05:27
And I think I found more joy in my life with my birth control, because I'm not thinking in the background, like, Oh, my blood sugar's stand, and I have to do something, because because you, it will become intuitive. And you won't think as much you will, you will think of it but not in a way that, that it. It's not the best thing is just really management like a household or something like that.

Scott Benner 1:06:04
So it's just something you have to do. Yeah, it's no different. It's no different than all of the other little things you have to do all day long. And you just named the podcast episode, by the way more joy.

Agi 1:06:17
And we will ambush

Scott Benner 1:06:18
Yes, and that which I already can't pronounce. Please tell your mom, no hard feelings.

Unknown Speaker 1:06:26
I don't want her mad at me.

Unknown Speaker 1:06:28
No.

Agi 1:06:30
She would like you actually.

Scott Benner 1:06:32
Thank you. Alright, well, then there it is. If we can get the if we can get the auditorium. I'll come to Europe and talk about being bold with insulin. How's that sound? I'll do the whole I'll do the whole thing. We'll go hungry. Where else do people listen? Czech Republic people. Listen, I have listeners in Prague everywhere. Honestly, there.

Agi 1:06:52
Oh, and also if you could cut it to somewhere, I don't want anybody to to have bad feelings about Hungary because all together it's a really beautiful and, and really pretty country. And, and we have really good culture here. And I love it here and I don't ever want to move from here. It's just the prices of health here. Which which isn't that bad?

Scott Benner 1:07:20
Oh, I don't. I did not take from it that you didn't love hungry. I just was trying to I was just trying to understand how, you know how it worked? how people get their supplies? And and yeah, the cost?

Agi 1:07:32
I know. I know. I just don't want anybody to think it's not a good thing to leave here. Because it can be it can be good. And there are people who can make the most out of it.

Scott Benner 1:07:45
Yep. No, I believe that I might my wife traveled for work. Not too hungry. Did she go to hungry as well? She was in Turkey? How close is that to you?

Agi 1:07:55
Ah, it's a bit far,

Scott Benner 1:07:56
far. Okay. She's been to let's say, let me think of all the places that I spent now I'm not gonna be able to list them all. But But my wife's had to for work travel to you know, that part of the world a number of times. And she's always come back saying, I really liked it there and telling me all the same things as you you're talking about architecture and art and people's culture and just how wonderful and, and entrenched it felt with the people like that. Were maybe here, we have so many different options for how to live your life and you know what direction you want to go into, that we don't sometimes we're not all connected, like, like you might be in a smaller place. You know what I mean? a place that's more rooted in tradition, I guess. So I know, please, I would never take that. And I will make sure I will make sure that everybody else knows that you you love hungry and no one could possibly make you move out unless they were to bring back the Animus ping pump and give you a GC then maybe you go to Maryland if somebody made you write for you, thank you so much for coming on. I'm going to say goodbye. Thank you to Aggie for doing this all the way from hungry, even though you know the internet doesn't know where you are. Thanks so much Aggie for doing this. Thank you so much Aggie for coming on the show for finding this show all the way in hungry and for representing all the people living in that part of the world. He did a really good job. I'm always looking for other people who live in different countries that would like to be on. And it's really great to hear how our lives are all really so very similar. Same shoes, right just different country. Thanks also to the Contour Next One blood glucose meter. You can check that out of course at Contour Next one.com and of course, touched by type one can be found at touched by type one.org. There's links in your show notes at Juicebox podcast.com. If you can't remember those links, but I feel Like you've heard them so much, you could probably say them in your sleep. dum dum. I'm gonna go to bed now before I die.

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