#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.
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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.
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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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