Scott Benner 12/12/18 Scott Benner 12/12/18

#198 Call Her Freddy

From Minnesota to Prague….

Michelle is from the Mid-West. Her entire family, including their young daughter with type 1, recently moved to Prague. This is what they've learned about living abroad with type 1 diabetes.

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

Scott Benner 0:00
Hello, everyone, welcome to Episode 198 of the Juicebox Podcast. Today's episode is sponsored by dexcom, makers of the G six continuous glucose monitor, and buy the only self contained tubeless insulin pump on the market on the pod, you can go to my omnipod.com forward slash juice box to get a free no obligation demo today. Or go to dexcom.com Ford slash juice box to learn more about getting started with the G six. Today, something kind of odd is going to happen on the podcast. It's small, but it's odd. I'll be speaking with Michelle, she's the mom of a type one diabetic. She's also part of a four person family, her her husband and two small children who moved from Minnesota to Prague to teach overseas. But in Prague, you know, the Czech Republic. And on last week's episode, we spoke with Alaina who was from the Czech Republic, I promise this was not on purpose. It is however, incredibly strange, as I don't know how I ended up with two people on the podcast and consecutive weeks who are either from or living in the Czech Republic. Anyway, I just found that really interesting. The odds must be pretty stacked against me, I can't imagine there are that many people in the Czech Republic listening to the podcast. But obviously, there are a few. And don't forget that nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise, always consult a physician before being bold with insulin. or making any changes to your health care plan. Go ahead and introduce yourself anyway you want to be known and we'll just jump right in.

Michelle 1:48
Okay, I'm Michelle ago, I'm the mother of a type one five year old. And we're originally from Minneapolis, Minnesota. And we travel the world and we are in Prague right now.

Scott Benner 2:00
Very nice time. Michelle's being she You see, I'm gonna leave in where I asked her to introduce herself because the little laugh afterwards cuz she was like, what are we going to talk about? You should send me some notes. And I'm like, man, it'll be okay. Don't worry. I know you're like what's gonna happen, but I hope it makes you feel better to know that I don't also know what's gonna happen. So it'll be it'll be good. So you're you reached out. Just because you have all this incredible experience with traveling with tight bond and being overseas, and having to use insurance and and get medical supplies and everything like that. And so I think that's a really cool topic. How did you end up leaving Minneapolis for the world?

Michelle 2:43
Well, we applied with a actually with a missionary organization in the summer of 2016, or I guess, in the spring, but we just felt like, this is where we're supposed to be right now. So I mean, for us, this was a very unique calling, I think within like, four months of applying. We had all the funding that we needed, and we were on a plane to Prague. So yeah, but we still our mission organization is based in the US. So the tricky thing is that we still have US based health insurance, but we're living here. So, so one hard thing is if we're getting equipment, or certain supplies, we still have to go through US companies, even though we're not located there. And we don't have an embassy mailbox here where they could ship to. So that would be like one caveat is if you are with the military, the embassy, and then those companies will ship to you. But otherwise you have to use a US mailing address. So that has made things a little bit tricky. But we've made it work for two years.

Scott Benner 3:50
And so somebody on the US side has to then get your supplies and then send them to you.

Michelle 3:55
Well, actually, before we left, we explained to our insurance what was happening and we were able to get two years worth of pump supplies to bring with us. So we put them we had like three suitcases full of stuff

Scott Benner 4:07
that we add stuff. That's okay, so let me make sure I understand everything. So it's you you're it's your daughter, right? Yeah. And she's five and and her husband, I'm assuming. Mm hmm. And the other kids.

Michelle 4:21
We have one other Yep. He's two and a half, two and a half.

Scott Benner 4:24
So. Oh, wow. Two and a half. So you were pregnant when you left?

Michelle 4:28
No, I was nine months old. Okay. maybe six months? I don't know. He was born in November. We left in August. Oh, math. Yeah,

Scott Benner 4:39
obviously this is something you guys wanted to do. You're on your way did you and you had the diabetes was in your life when you when you made this decision. He left How long? How long did did she have diabetes before you guys did this?

Michelle 4:53
Two years before he was diagnosed in August of 2014. She was 16 months old. And so we, you know, and we got the pump almost immediately, she only did injections for two months. And then we got the insulin pump. Because her doses that she needed were very, very small at the time. So the pump really allowed us to give her those minute doses, which was great. And so yeah, after two years, you know, I mean, and you know, if you live with something for 24 hours a day, and you're managing it that way all the time, you become familiar with it pretty quickly.

Unknown Speaker 5:27
Yeah. So

Michelle 5:27
after two years, I mean, we we still encounter new situations, even now. And we're almost, you know, I don't know how many how many years is that? A lot of years, four years in the duration. But yeah, after two years, we had seen a lot of things and we felt comfortable moving.

Scott Benner 5:47
So that's really cool. Yeah. Are you adventurous like this before? All this? We you always somebody who was like, let's just try this?

Michelle 5:56
Well, we Yeah, I mean, we moved to Minnesota The day after our wedding. So I guess you could call that adventurous, got in a car, and then we were gone. So

Scott Benner 6:06
it's a lot of effort to avoid writing. thank you notes. Michelle.

Unknown Speaker 6:08
Yeah.

Scott Benner 6:09
All right. Soccer is good. I, I imagined in my mind, your your daughter got diabetes, and you're like, I'm gonna go to Prague, you all stay here. And then they just glommed onto your idea and chased you over there? Because I felt like running away a couple of times.

Unknown Speaker 6:25
Of course, yeah.

Michelle 6:26
You know, we were actually thankful that that was the diagnosis at the time, because we had seen her get sick. And we asked the doctor, it actually I had asked point blank, could it be type one diabetes? And I was told no, because her weight was good. She had just had a 15 month checkup? And they said, Oh, no, her weight is good. And you know, type one is autoimmune. If she was autoimmune, she would have been sick with other things. And she'd never been sick. You know, she'd never even had a fever. And so they said, there's no way that she's type one. And so they just didn't even test her. That's an interesting. And she was Yeah, and she had a lot of diaper used at the time. And so at the 15 month checkup, the pediatrician had said, Oh, well, that can be a sign of autoimmune. But you're she's so healthy, that I don't think it's that at all. He said, You just need to change her diaper more. plump she is it's all fine.

Unknown Speaker 7:17
My medical diagnosis. That's,

Michelle 7:22
I think, kind of anti daycare, we both my husband and I worked full time at the time. And our daughter was in daycare four days a week. And I just got the feeling that our pediatrician didn't really agree with that choice. Because he was just kind of blaming the daycare saying, Oh, well, obviously, they're not changing her enough, you know, and we loved the ladies that took care of our daughter. And we did not feel that they were doing an enough job at all. And so we really fought with him on that. And then in the summer, we even like, let her go around without a diaper at all. And just with the dress on, you know, and even still, she had to have Neistat in or she would have the yeast infection. And that went on for a few months. And then after her 15 month checkup, I went online and thought, well, there has to be something else we can do, you know. And so then I read an article that said that this could be a symptom of type one diabetes, and I thought, well, it's not like call the National Guard. This is one thing, you know, so we'll wait. And we'll see if any other symptoms develop. But I said something to my husband at that time. I said, Well, do you think it could be type one? And he said, No, that would be so weird. And then then she started to really heavily wet her diapers. I mean, every one of them was just like 10 pounds heavy, just so have you like completely saturated hanging off her. And it was like every hour, and we were about to go on a trip, our wedding anniversary, and I and we were gonna take her with us and I called the Doctor again. And I said, Okay, well, now she also has like these really heavy diapers all the time. We're changing her. And I described how heavy and how often they said, well, it's summer, you know, she's just drinking a lot. And, and I said specifically like, could it be type one diabetes? She also has these diaper rashes. And they said, Oh, no, no, no, no, she we looked at her chart, her weight is good her she's very healthy. And nobody told me and I didn't look into it enough. Nobody told me the risks of her being undiagnosed and type one. And two, then when we came back from our trip over the weekend, then she got violently ill she was in decay. She ended up in PETA or contemplative care. And we switched pediatricians i was i was livid.

Scott Benner 9:36
You know, I never heard a doctor base everything on your weight being okay

Michelle 9:39
you with very, very small children. I don't know how old Arden was at diagnosis, but I've heard this from other parents too. If their child is still getting their, you know, like checkups during their first year or two years of life when they're really little and they go in all the time. They base a lot of their health on weight. You know, healthy weight means I A lot, and so that we went through any that was definitely true. They thought, you know, well, your weight is good. And then but then they also kind of paired that with the fact that I think they have this mis assumption that if you're type one, it's autoimmune. So you're gonna just be prone to all these illnesses, which, with our kids, that is not true at all. Our youngest is the one who really gets sick and is affected by colds and everything so much more. And Winnie like, has never still never had any kind of prescription for anything like no bronchitis, no pneumonia, nothing, right.

Scott Benner 10:33
I always see I always see with Arden, like, she's a sign of diabetes, is incredibly healthy and doesn't get saved almost at all. Yeah, probably because her immune system is probably too good, which is probably how it beat up and killed her pancreas. And, you know, like,

Unknown Speaker 10:48
that's the theory. Yeah.

Scott Benner 10:50
Yeah. And I'm, I'm very similar. Like, I, if I get sick, I'm sick for four hours. Like, like, I get, oh, I just happened to me. A week or so ago. Like I said to my wife, I'm like, I don't feel well. And I'm going to lay down now is like eight o'clock at night. And at midnight, I opened my eyes. I was like, Oh, I'm all better. And it just, you know, I don't know that. That's just, I don't know. That's a very, very strange.

Michelle 11:17
Anyway. So you were saying you're talking about running away a diagnosis or feeling that way. But so for us, we felt very thankful that, that this was her diagnosis, and that it was something that we could manage, because just in those last couple days, when she got really sick, and it happened very, very quickly, we didn't know what to do with her. And we were so worried about her. And then and when she was in decay, I mean, it was the scariest thing ever. And we were so thankful that, that we can manage type one, and that she can live a completely normal, healthy life apart, you know, apart from this one thing, you know, that she has to deal with. And it's not that it's easy, but it's doable, right. And so, and that's the blessing is that it's doable. And we were so glad that like, we could do a week of training at the hospital and do all these classes and go home and figure it out. And so

Scott Benner 12:06
we your mind must have really wandered when she ended up in the hospital, right? Like, like, before you have because everybody's been telling you it's not diabetes, every time you've brought up. Did you wonder what else it might be? Like? Were you did you let your imagination get the best of you that or did they give you? No, I didn't

Michelle 12:21
I just kept looking for more symptoms of type one thinking, well, it's, you know, I just kept watching, like for the list of symptoms that I'd read online. And then when something new would present itself? I was I would say, Oh, yeah, I don't know, I maybe they're awesome. And then the day that she threw up when I brought her into the pediatrician, I said, test her for test your blood sugar. I want it you know, like I want you to do if it's that is so I don't know, I still have kind of had that. I don't know idea. But like I said, I definitely didn't research it enough. And no one warned me. None of the nurses I talked to the pediatrician, nobody told me what would happen. If she was type one, her pancreas was shutting down, and it wasn't taking care of it. And nobody told me, you know that we could have just brought her to someone with a meter. Or we could have bought a meter at the pharmacy to check her. You know, and you know how insurance works. You don't always know what you're going to pay at the doctor. And if they tell you you don't need to come in, you're like, Okay, I guess I will. Like,

Scott Benner 13:21
it's very hard situation to be, like aggressive in

Michelle 13:25
well, and we didn't know what the test was. And so I was thinking I don't want to be one of those parents who ordered an unnecessary, like invasive tests for my kids. They didn't tell me it was just a finger prick. Nobody said like, well, it's so easy, you know, just bring her in, just to be sure, yeah. And we were not kind of parents who called wolf all the time. You know, we never came in unless it was a regular checkup. So I just I still can't believe that nobody looked into anything any further. You know, it's not like we had this history of calling in all the time for silly little things. You know, we had a concern, and we had reasons for our concern. And we kind of got brushed aside, because they had this chart that said she was healthy, you know, healthy based on her weight.

Scott Benner 14:05
And it's only because you hadn't figured it out a couple of times to

Michelle 14:09
like you. We asked a couple of different people, and, you know, so anyway, but

Scott Benner 14:16
has that affected how you do things now? Like are you more aggressive, I guess in situations like that anymore?

Michelle 14:24
I don't know. I think I'm aggressive anyway. So I don't think I need to be more aggressive. I think I'm aggressive enough. But I think we're you know, we're more picky now about our pediatrician for sure. You know, we definitely like, like to be in someone's care who advocates for you know, like finger sticking or like blood testing or someone who will look and look into those things. And I think being here in Prague, we've noticed or at least I've noticed, I'm in a group for moms of type one kids here and I've met so many more people whose children are diagnosed young age than I ever met in Minneapolis, like so many more. It's really incredible. So I think we've seen there a lot more cautious here with health care. And testing is everything is so much cheaper. So you don't have these prices hanging over your head. If the doctor says like, Oh, I want to, you know, run this test or look into this thing for you, you know, you're not worried right away about I says

Scott Benner 15:26
Dexcom g six continuous glucose monitoring system is now FDA permitted for zero finger sticks. That means you can make treatment decisions based on your Dexcom. And if you don't believe the FDA, believe me, because I just did it five minutes ago with our Arden's been at school all day. As she left for school in the morning, her blood sugar was 120 and it was starting to rise. Then we gave her a Temp Basal increase and bolused the blood sugar actually went to 140 and hung there for about 30 minutes before we started to get it to come back down. Eight o'clock. 830 got it back down under 121 10. And eventually around 9am. It leveled out around 92 stayed there for an hour and a half. She's got an early lunch today. So about 1020 she texts me and says, Hey, I'm going to be going to lunch soon. I looked up saw the trend of the Dexcom graph saw whatever blood sugar was 92. And I said okay, let's do a Temp Basal increase of 40% for an hour and a half. And Bolus 14 units. We're going to extend it. Let's do 50% now, and 50% over the next hour. It's now 25 minutes later and Arden's eating, her blood sugar is 98. And it is stable. And if by chance we've made some sort of an error with her bolus, and it starts to go up or down, we'll be able to make adjustments on the fly because of the information coming back from her CGM. And how am I doing that? Because it has the share feature. And I can see it at home while I'm talking to you while Arden's off at school. Sharon follow is available for Android and Apple. These are our results. Yours may vary. Check out dexcom.com forward slash juice box with links in your show notes or Juicebox podcast.com to find out more. What was her blood sugar when she went to DK?

Michelle 17:17
It was over 500 on the meter that they had at the pediatricians office. But I don't I don't know. You know, like they don't think they told us at the hospital and yeah, I mean, that's fine. I

Scott Benner 17:30
was just I was just wondering how far it got because she was tiny, right? So

Michelle 17:34
yeah, yeah. So everything happened really rapidly. And I've read some studies too, like there's a study out of the UK, done on small children who are diagnosed with type one, and they talk about how rapidly the symptoms develop, you know, so for Winnie, when she started heavily wetting her diapers, it was maybe like, a week and a half. And then she was in the hospital DK, you know, so the diaper use was allowed around for quite a bit longer. But then then when she started had more of the classic symptoms that you would recognize in adults or other people, it was like less than two weeks.

Scott Benner 18:10
Yeah. So you know, it's funny you say that, because if you make me go through my timeline, and Arjun was definitely sick and not feeling well. She was having these intermittent bowel movements, like it was days in between, and they were they were rock hard, like there was no moisture to them whatsoever. But when the heavy urination started, it was only a couple days, we were in the hospital. Right? Like it. Yeah, like that. I felt like I guess now that you look back, if that was sort of like the, that was the last one, you know, yeah, it's really something. Um, so what I'm doing in Prague,

Michelle 18:46
we work for a Christian school. My husband and I both do and, and our kids go to school here while we're teaching. So that's been interesting. So our kids are like, in a, in a school run by these really nice Czech ladies. And so we've learned I've learned some of the the vocab for for diabetes in Czech, which has been interesting, but where Winnie is the director also speaks English and Winnie's teacher also knows she's proficient in English. She's not fluent, but, but she speaks well enough that we can communicate so. So that was important to us, especially in the beginning. We toyed around with the idea of putting her in a complete Lea check environment for next year. But you kind of run into the same issues that you do in the US with really little ones and type one where the schools aren't always prepared to take them. They don't have a system in place because your kid might be the first one they've ever seen. Yeah. So we didn't and we didn't know anybody in our immediate vicinity, who has a type one kid when he's age in school, so there wasn't anything recommended to us and I looked into a few and nothing really struck me social stay where she is for next year. But it's good. You know, she's she's still she's learning the language and doing really well. And they celebrate world diabetes day with her and November the whole school wears blue for her even the cook at the school. So it's, it's pretty fun. Yeah.

Scott Benner 20:19
So do you speak any? Did you speak any of the language coming in? Or did you? No, no? Are you picking it up at all?

Michelle 20:28
A little bit, I go, I sit in on one of the classes at the high school where we teach. And then I do the same assignments at the high school kids in the class. Um, so yeah, I do that when I'm and that's, that's fun. It's good.

Scott Benner 20:43
I can't imagine like making up a language as an adult, like, it seems.

Michelle 20:48
It's good, it's good for your brain, right? Keep learning new things. And you're, it's useful. A lot of the like, the government buildings that we go into, people don't always speak English. And so like, if I go to the post office, I probably have to speak to them in Czech, or I have to pick a very specific post office, you know, where they're going to be more likely to speak English, and then have to go the touristy areas that I don't want to go to.

Unknown Speaker 21:15
So

Unknown Speaker 21:16
is that isolating at all?

Michelle 21:18
Um, a little bit, but you know, I have a group of You mean, like, for like, a type one community?

Scott Benner 21:25
In general, like, do you you know, I mean, if I get incredibly bored, I can wander into my backyard and talk to my neighbor. Like, you know, but but like, do you? Is it like you and your husband and the kids and then

Michelle 21:36
you have to go to school where we teach, they speak English, you know, an English speaking school. So the people that coworkers speak English, even the ones who teach track, they speak English. Also, so So no, so in that way, we're kind of in this bubble. And yeah, it can be a little overwhelming sometimes to go out until like, like to go to the post office. For example, if I have to ask them for something new. I might have to, like, refuse a. I don't know if you can hear when is Dexcom is going on? Okay, yeah, I just heard it on my phone. But um, anyway, yeah, like to go to post office, I have to prepare myself, you know, for like, 30 minutes I'll spend that I need and like, you know, going with a picture of what I want.

Scott Benner 22:21
How long you spend it? Are you planning on staying? Is it indefinite? Or do you have a?

Michelle 22:26
I don't know, maybe like we'd like to stay for next year. We're coming back for a little bit this summer, because we need to fundraise for our third year. Okay.

Scott Benner 22:33
So do you have to come home and be like, Hey, listen, everybody. We're doing good work over here. Somebody needs to pay for it. And

Michelle 22:41
we, you know, we've been really fortunate that we have a pretty, pretty awesome support team behind us. So yeah, that's pretty good. It's

Scott Benner 22:49
actually very, it's amazing. It's a, it's, I don't know, a lot of people that would do something like that. So I'm a little overwhelmed with what you guys. Oh, wow. That's really great. Yeah.

Michelle 23:01
Yeah, it's totally doable, though. It's, it's really great. And it's just by God's grace, that we're here. And we're just happy to be here. So I'd have the opportunity, though. And, yeah, and I think it's important for people to know that you, they can do things like that they can move across the world with type one, and it's okay, it'll be fine. And actually, we were talking about when Winnie goes to college, if, if she's uninsured, at any point, we'll ship it to Europe, because you can buy insulin here at the pharmacy without insurance for like 40 bucks. So we're just like, we're gonna send her to Europe, if effer doesn't have insurance, and then, and we feel that they'll have what she needs, because that's one thing we've appreciated about the opportunity here is the price of some of the things so like, our durable medical equipment we sought to get through the US but like, we can pay for insulin out of pocket, and then our insurance will reimburse us and the insulin are so cheap, we can afford to do that. So I just go to the pharmacy and like glucagon we bought the other day, and it was like 20 bucks for glucagon, which is a vial

Scott Benner 24:05
of insulin last year.

Michelle 24:07
Well, I get it like a box. So like an entire box of five pen fills with $40 Oh,

Scott Benner 24:13
that's pretty reasonable.

Unknown Speaker 24:16
Yeah,

Scott Benner 24:17
that's like, yeah, that's, uh, I mean, I think that's about my copay. Maybe it is. Yeah, when when Arden's insulin pumps, I think we get more than five. But we probably have more insulin than that for that money. But still, it's

Michelle 24:30
right. Well, it depends on what your prescription is, right? Like for winning one box was her monthly need. And so for us, our copay was $40 for the one box, but then, you know, if we were the retail price on that I think I saw at our target pharmacy one time was like $450, you know, so I never could have walked into the target pharmacy and bought my insulin without insurance without the copay. But that's what we do here. I just walk in and I have to have a prescription from the doctor. So that's wonderful. Here, they don't keep your prescription on file at the pharmacy, the doctor will write you a paper slip, and then you go in with it. And then if you want more insulin, you have to go back to the doctor and get another slip. But they'll write you like a three month supply. And so we get enough to get us between appointments, and it works totally fine. And he also, in our doctor said, if we ever ran out, we just email him and he'll send us a prescription In the meantime, and our pediatrician here has written us a prescription for insulin, because when we first arrived, she was the first doctor that we met. And so it you don't even have to go to the endocrinologist. And it was really easy. I mean, I just showed them. I didn't even show them her paperwork from Minnesota had it with me. But I just said she's diabetic, I need her insulin. And they were like, Okay, what do you want?

Scott Benner 25:47
So when you say it's easy, is that more common Sensi? Like, like less, there's rules, and we have to like follow these paths and more like, boy, your kid has diabetes. So short take insulin, is it like that?

Michelle 25:59
Yeah, I mean, I think it's maybe less bureaucratic, I think in our situation might be a little different, because they know that we have like a US prescription. So Wendy Winnie's doctor here, she actually sees a diabetologist not an endocrinologist, they have like this subspecialty underneath endocrinology, like people who deal specifically with diabetes. So her diabetologist he sticks more to like what her prescription in the US was, but I mean, he doesn't try to rewrite it or recommend anything different. He's like, Okay, if this is what you're using, and it works for you, I'll just write you the same prescription is really great.

Scott Benner 26:35
Because any Yeah, any of that weight that can get lifted from you, honestly makes everything better, just not having to make these facts. I'll tell you that. You and I are talking in May, I don't know when this goes up, you know, it could be months from now. But we just had an I just we just had this, you know, Job Change in our life for my little my wife, my wife went from one place to another and our insurance changed. And so we're starting to get settled. And she's settling in at the job. And about a weekend I said, Okay, let's you know, let's see, let's like, let's get excited. Let's call the next comment on the pot and see if they accept this insurance because we had been buying through a third party called edge Park, which is, yep, which edge Park has gotten better over the years, but it's generally speaking your heart. And so people who just came into edge Park now might be like, it's not bad to you. I say, you should have tried doing it five years ago. But but but nevertheless, I called up Dexcom. They're like, yeah, we take your insurance. And I was like, Yay, I didn't like I just I felt elated. I was like, This is so exciting. And Omnipod just called me yesterday. And I know what you're thinking they sponsor the show. Shouldn't I get these pumps for free? No, that's not how it works. I pay for I'm like everybody else. And and so I called up and I was like, here's all my information. You know, please let me know. And they call me back in just a couple days and said, here's what we've learned. Your pumps are going to be 100% free. Do you want to order some now? I was like, really? Like no copay? No, I pay you a little bit. I get paid nothing. Just tell us what you want. And they're gonna come. Oh, wow. It was just such a relief. You know, just one less thing to think about to do to argue about the call about to get an email about like, I was just, I just was really grateful for that, to be perfectly honest. It's like, Wow, that's so now. That is really good. Yeah. So I said my wife got home from work. I was like, Kelly, you can never leave this job. This is the job. In case you're wondering. You have to keep forever.

Unknown Speaker 28:27
Yeah,

Scott Benner 28:28
just going to College Park again for No, sir.

Unknown Speaker 28:32
Yeah, yep. I've been there.

Scott Benner 28:35
I interviewed someone. Now I'm going to get this wrong. I know. I'll pick the wrong one is a checklist avakian ours, the Czech Republic, which is Czech Republic Republic, I interviewed a young girl who's in university in England, but who's from the Czech Republic. And she was talking about how she goes back and forth to get different things. And she wants to, you know, it was I was, but everything she spoke about was just, I wish I could just stay here in England because it's so easy. And everyone tells me that everybody I've ever spoken to from the UK tells me the same thing. Like it's just very easy to have diabetes here. So yeah, yep. Yeah. It makes you a little sad when they're saying it. Like. I'm actually on my way, in a couple days, to some meeting at Novo Nordisk where they want to talk about insulin pricing. And ah, like, I'm gonna be a rabble rouser a little bit when I'm when I'm in there. So let's see.

Michelle 29:32
Yeah, you can ask them why they why they charge double what most European countries?

Unknown Speaker 29:37
Yeah, yeah, I mentioned your 49 double bet. Well,

Michelle 29:39
I mean, at least at least more than that. I mean, here I think. Yeah, our price is like 10% of what it was in Minneapolis. But, you know, like you were saying, it depends on what your prescription is, though, to you know, like if you if here, they charge you by the box. It's not necessarily like your one month supply is this copay right now. And then, you know, so it's good that it's affordable. It's good. Yeah.

Scott Benner 30:07
Buy it. Now I know for us like whatever Arden's prescription for insulin is, that's what our copay covers. Like, right? And so if that if if the if the script says it's four boxes that its fourth script were to say same sex, it's still the same price, right?

Michelle 30:22
Yeah, exactly. So yeah, so your price per box can vary based on what your prescription is, right? Yeah.

Scott Benner 30:28
Yeah. Interesting. Yeah, very generally speaking in in my favor, the more we need, right?

Michelle 30:34
Yeah, the higher they write the prescription the letter, the farther that copay stretches, the retail price is still the same, you know, like, if you were to not have a prescription and have to go in and just buy a box, and you'd pay the retail price. So that's,

Scott Benner 30:48
I don't know, what's missing. Here, excuse me, for anybody, Michelle. And I almost didn't do this, because I almost don't have a voice. But excuse me, it and there's so many different levels and tiers of insurance here. Like, my wife works at a pharma company, and she has a really good insurance and so, but you can easily work at that same company and get a different level of that insurance or work in a different company and, and have a plan that doesn't come anywhere near, you know, 100% of your Durable Medical goods and stuff like that. So yeah, it is luck of the draw a lot

Michelle 31:22
it is. And it also just depends on what your employer has. And you know, you could be fortunate and get a job for Google, and I don't know how their insurances, but it's going to be different than somebody who works at a department store, you know, probably, yeah, oh, they're gonna offer different things. And

Scott Benner 31:39
with a big enough company who self ensures, then things get easier. And that is, that is definitely been my finding in the past. And

Unknown Speaker 31:47
right, I don't

Scott Benner 31:48
know how much people understand that when companies get so big. They really only use the insurance companies to service the insurance, they just ever, you know, the whatever it ends up being whatever the insurance company is, you know, you make a claim the insurance company pays and all the paperwork that happens is like that. But at the end of the year, or a couple of times a year, your company just writes one big check for every dollar that that insurance company has sent out they are they are financing your your health insurance 100% from the company, they just their service to the company. I don't know if people know that or not. But

Unknown Speaker 32:21
now they do.

Scott Benner 32:22
Yeah, no. And when you get big enough like that, when you get with a company like that, they generally are more generous, I found. If you're considering insulin pump therapy, the best way to understand the comfort and convenience of the Omni pod system is to try it firsthand. To try a free no obligation pod today. All you have to do, you can get a demo kit, which includes a sample nonfunctioning pod and see what you think there's absolutely no obligation to buy. You'll get to wear a nonfunctioning pod to see how it feels, you'll be able to find a spot on your body that works best for you. And then you can feel the freedom you could have with an omni pod. Try to imagine your I don't know. having lunch lunches a nice meal the day, don't you think the sun's out? The birds are chirping, and you're hungry. This lunch you're about to have is a little strange. It's a little carb heavy, but it's got some simple sugars in it. And you'd like to see the insulin, you're giving yourself stretched out through an extended bolus. How do you do that? With a push of a button, the same way you would give yourself a bolus or change your basal rates, or do any of the things that you need to do with your insulin pump all wirelessly from the personal diabetes manager. That's right, there is no big unit of thing stuck to you. You are not connected between the tube and this controlling device. This controlling device with Omni pod completely wireless with every other insulin pump tethered with a tube

Unknown Speaker 33:59
IU Eric.

Scott Benner 34:02
I mean unless you like that sort of thing. And then really I don't care. I'm just add to that. Get it I mean, like I'm not judging, just try it on the pod, go to my omnipod.com forward slash juice box. Check it out today. The free no obligation demo seriously as simple as sign up for and I think you'll like it.

Michelle 34:22
But my name is diagnosed, we have my husband worked for a corporation, and they had they had good insurance. So you know, but she easily could have been diagnosed when we didn't have that policy. You know, and so, yeah, and actually, that's one of the reasons we still have the insurance in the US like, and we haven't switched over to check insurance as we think about what if we did move back someday, and we want to want to keep her insured and the glass because it's so it's a little bit chaotic. You know, I don't know if you've seen in the news. It's a little chaotic right now. So we do worry about these protections that are out there for people with pre existing conditions, pre existing conditions, and will they stay? You know, Will these protections stay? And would we have to worry about her either getting denied a policy? Or more likely would you know, she'd be charged so much that it would be a burden and be unaffordable for her? You know, which is the more likely scenario, right, like that's the most likely thing is that they would take away the protection for people with pre existing and that you'd have to pay so much that you couldn't afford, you could have insurance. You can't afford it, but you can have it right. Yeah. Yeah. But you know, that's why that's why we talk sometimes about anything go to Europe for coffee. Just anywhere, anywhere, where she can just walk into the pharmacy and and buyer insulin out of pocket.

Scott Benner 35:50
But it's so you said you found a community of people with type one. Hmm, in Prague. How did that? Would You Do? Is there a Prague Facebook? How'd you figure it out?

Michelle 36:01
Yeah, well, I mean, they're on Facebook, just like everybody else. I'm just kidding. But I understand. But, uh, well, so check is a really complex language, it's very difficult. And so. And I say that, because it makes it hard to find a group if you don't know exactly what the name of the group is, because the way that a word is written can change based on how it's used in a sentence. So like, even your name changes, based on the structure of the sentence. So like, nothing, nothing stays the same. Nothing is sacred, you know, your first name, the name of the city, everything. So you can't just type in the word diabetes in check, and then expect to find a group. So I contacted the doctor that we were seeing. I'm at the hospital here, for Winnie's diabetic checkups. And I asked him if he knew of anything, and he recommended a Facebook group to me. And so it's for moms with kids of type one, but there's some dads in there too. And, yeah, and I'm the only as far as I know, I'm the only American in the group. And I, as far as I know, also the only native English speaker, I don't ask for comments. I don't think it's a super common thing for people to like, relocate when their kid has type one, you know, or like, relocate this far at least to relocate to a different country? Yeah. So it's a little bit weird. And I think in our case, too, it's weird, because we still have our US insurance policy. And I think, yeah, for some reasons, it makes sense for us to switch to the check policy. And then for other reasons that we like keeping the US. I don't know, it's the system we know, like weed. And we know, like, I don't remember what the terms are for the measurements, but they measure blood sugar differently here, you know, so like, your, your blood sugar might be three or four or five. It's on a different scale. centimeters. Yeah, right. I don't know what else. So I don't, you'll have to look it up. And then you can add that into the podcast. I don't remember what the different all the different scales are. But

Scott Benner 38:08
I hear from so many people from outside of the US who told me that they listened to the podcast with the conversion charts so that when the numbers come in, they can they can follow along easier,

Michelle 38:17
right? Well, I like the US scale better. I think it's more precise, because there you have more numbers to work with, you know, like, I think, I think to convert you divide by 18, or something there abouts. But, you know, with the European chart, they're only measuring to the first decimal, you know, and so you might have numbers like one to 20. And that's what you're working with. And you might have like 1.1 1.2, all the way up to 20. But then in the US. So the equivalent would be numbers like 20 to 400. And so you have so many more numbers you're working with, and I just feel like that'd be more of a chat way at what I know that I know that system. That's what we've done for four years. So it's hard to want to switch. And then we think well, how long if we switched over to European equipment? How long would we have to like, are we committing to staying here forever, then or for four years? What are insurance? Let us get a new pump. If we move back? I know there's a big question.

Scott Benner 39:17
I'm starting the timer right now on somebody who's gonna email me to tell me that there's their their thing is precise to you just don't understand it, which I completely believe could be true. So

Michelle 39:26
I think it's not precise. I just think I just think that one way is maybe a little more precise. I don't understand why they have two scales. I mean, the whole thing is interesting. I don't I don't know insulin pumps aren't aren't technology. So like, why didn't they just make them all universal? I don't know. Do they want to keep the market separate? It's a ploy.

Scott Benner 39:51
Like, even for money.

Michelle 39:54
While you think about like how long have meters been around for why did they have to make two separate scales. It just Seems a little silly. I don't know,

Scott Benner 40:02
you're a bad math people and other things. I'm assuming the first email I get is from either I'm gonna say South Africa or Australia. That's kind of that's gonna be I my outlier is New Zealand. I'm thinking that's where they're like, you got so wrong about that. But I agree with you at least my interpretation of it, like I see like, somebody's like my blood sugar's 2.4. And then I look on the scale, and it's within like a 10 or 15 point range on our scale. And I was like, well, that's

Michelle 40:30
right. Exactly. Yeah. And I think that's where you get in into the preciseness factor and

Scott Benner 40:36
listen, maybe maybe what they said, was these meters aren't that accurate anyway, it's around 2.4. Deal with it, you'll be fine. Yeah, that's, that's very interesting. So okay, so I think the real story here is that you just sort of bravely stood up and like, we're gonna leave the country now with our little tiny diagnose kid, and it's going to be fine. And it has been fine, right? There's no like, you don't have some scary stories, or you didn't run out of insulin on a on a train from a 1958 black and white movie where some guys with Tommy guns tried to kill you or nothing like that bad has happened. It's all just been fine. Do you fly a lot? Like back in?

Michelle 41:19
I think I mean, I know more than anybody else. We we probably, I mean, here we take the train more than anything, you know, because it's, it's cheaper that way. We've flown it. I mean, a few times since being here, but whether

Scott Benner 41:33
it's alone? You don't you don't have any, you don't have any compunction about going on a trip to Taiwan?

Michelle 41:41
No, no, I don't think at all. We brought I mean, we brought a lot of insulin with us, we brought like, oh, at least like a three or six months supply to get us started. Because we were worried about like, how would we find a doctor, you know, like, we didn't even know who our doctor would be when we got here, because we didn't know where our flat would be, or any of those things. So we brought a pretty big supply with us. And we just put it in a cooler bag with ice packs and refrigerated it as soon as we got here. And all of it was fine. You know, like it, it lasted just fine. So yeah,

Scott Benner 42:17
I want to overlaid on what Michelle said, most of the things that you worry about, I'm talking to everybody listening now are not things you should be worrying about. Like it's not that shouldn't pay attention to it. If you're going to travel, you know, you're gonna have to keep the insulin cool. You're gonna have to make sure you have everything with the definitely don't I saw somebody online the other day that went on vacation, like I have everything except for and they forgot, like, I forget what it was. But it was like this one important component like in the, in the midst of making themselves crazy and gathering all this stuff together. They forgot, like the most obvious part of what they needed. You know, and I think sometimes we make ourselves mental about stuff like that. And I can tell you, I mean, we've traveled my family and I travel to the Caribbean. I don't want to say frequently, because it's not frequently, but periodically, that's where we vacation. And there is that thought in your head, like I do not want to get to this tiny little island and not have something, right. And so I do carry more than I need. You know, if we're going away for a week, I take 10 on the pods with me. And as I'm putting the 10 in there in the box, and I think that's not going to be enough. And then I go that's a month's worth of Army pods. How could that not be enough? Like what what one would have to go bed every day. And I'd still have three left when I got home. And that's never gonna happen. That's never happened in the, you know, five years old. 678-910-1112 13 that 10 years I've been using on the pod nothing like that's even remotely happened. But the minute you add the uncertainty and you're like, but it could, but the truth is, it's not going to right? And if it does, you have insulin with your needles. It's not like you couldn't figure it out if something crazy happened.

Michelle 43:56
Yeah, and I think that's the good thing that people in type one community, they're really good about helping each other and people are all about asking for help. You know, when we were on the plane right over our flight got delayed, or one of them did our second flight coming out of New York and that was our overseas flight got delayed and so my ice packs had started to like like they weren't and it was then I was thinking like, Oh, I don't know if they're gonna last as long as they thought they would. But we told the flight attendants you know, I have insulin in this bag and they brought me extra ice in like a bag to add to this cooler that I already had. Yeah, so and then with her diabetes supplies, we spread them out across different pieces of luggage in case something got lost. So like the pump supplies that we brought, I had like a mix of infusion sets and cartridges in each bag. You know, so it's not like I put only one item in each bag. Every every bag had an assortment of different items. So if one bag, a bag, they'll have what we needed, out of one of those bags, you know and then we always carry some in a carry on You know, yeah, you know, we don't usually we don't usually check bags, because we're not usually been gone that long. But definitely when we came here we had to check baggage. So, you know, that's where most of her stuff was, but some of it was with us on the plane just in case everything got lost for a period of time. You know, if you're traveling somewhere

Scott Benner 45:19
reasonably modern, you're gonna be okay. I Oh, yeah,

Michelle 45:23
that's the thing. Yeah. It just depends on though. Like, how long will it take them to get to you? And especially here, like a lot of things aren't open on the weekends, like, Oh, yeah, like the pharmacy is not open on the weekends. Yeah, if you want to go to the pharmacy on the weekend, you have to go out to the hospital. Or maybe there might be one in like a shopping mall. But like our neighborhood pharmacy did not have any week. hours. No, Saturday, no, Sunday. Yeah. Um,

Scott Benner 45:47
when I first met, when I first met my wife, she was leaving to go back to college, it was the summertime and she was gonna go and I remember, I met her at her job. And she's in his office, she's writing this like, massive list. And I was like, what, what is that? And she's like, Oh, these are the things I need to bring back to school. I was like, where do you go to school? Like on Mars? Like you wrote shampoo on this list? Like, do they not have shampoo where you go to school? And and it was interesting, like, you know, for the first couple moments of the conversation, I was like, is this girl freaked out about like crossing a state line without conditioner? Or like, what? And then she just, you know, at the end, she's like, Look, here's the truth. stuff I buy here, my mom pays for stuff I buy when I'm at school I have to pay for and I was like, oh, okay, you're just you're just trying to get this stuff for free. Before you leave. I'm like that I understand. But when I thought she was planning for this, like, excursion, I was like, you're going to Delaware not, you know, not an island in the middle of the Pacific. Like, like, it's, you know, you'll be okay, when you get there. And I think that's important to remember, almost anywhere you go. In a modern world, there'll be a pharmacy, they'll be something you can find. It's not like you're gonna be in an incredibly emergent in an emergent situation like, that you just can't get your way out of and if that happens to you. That's pretty random. You know, so yeah, it's the worry, I think that cripples most people and you don't have that, for whatever reason. I haven't figured it out yet, Misha, but you're, you're very carefree in your mind.

Michelle 47:16
It's not, you know, so we're not as carefree as you think we just work we plan carefully. Okay, like, when we applied with this mission organization to go overseas, we explained pretty clearly, like, our child has type one, we need to be near a hospital somewhere, like, we can't go just anywhere, you know, like, we would love to say that we would go to Africa, or we would go to some little village somewhere. But we can't do that, you know, so. But like you said, in a modern world, especially those of us who've grown up in a modern world, you'd then you feel more comfortable, you don't have to worry so much, you know how to find the things that you need. So we still stayed within that, that realm, like we were not ready to leave, or something like that. And I think if you're an adult with type one, and you want to do that, that's one thing. But if you're a parent of a child, I think you just you just feel this like really heavy weight to protect them. And to make sure that there's they're really super sick. You know, and, and so like, we're not going to go to this place that doesn't have refrigerators, you know, I've read online about villages where they don't have refrigerators to keep their insulin in. And so they make like clay pots to keep their insulin and to try to keep it cold. But isn't stay good long enough, because that's not a sufficient replacement for refrigerator, you know, so we weren't we were not willing to take our child into a situation like that. Because then we feel like we're putting her life at risk. Right. And that's not worth it. Yeah. So the

Scott Benner 48:40
comfort, the comfort you live with you helped create by putting yourself in the best situation. Yeah,

Michelle 48:46
we I mean, we specifically requested to be in a bigger city. And there were a couple of different options that they presented to us that they thought would be a good fit. And so in Prague was one of those. And so we're only like 30 minutes from the university hospital here. And there are lots of pharmacies, right in our neighborhood. So it's, there's an airport here, you know, like, it's your big city. So, yes, everything we have everything we need we have right here. So yes, it may seem carefree, because we're willing to go all this distance, but it was pretty pretty well thought out and planned and it took us we you know, we applied in April to come but we did not decide until the end of May that we for sure wanted to do this and we did a lot of checking with you know, like the insurance company in different places to make sure we could have all the supplies we needed an access to everything that we wanted. So, yeah, I don't know. They not everything worked out exactly the way that we thought it would, you know, but like I said, we came with like two years of infusion sets and cartridges and things so good.

Scott Benner 50:00
Jeff are alive. So you were done over there and come back again, with all the stuff that you bought so

Michelle 50:03
well. And this summer, we're switching to Omnipod. Because shout out to Omnipod. But we have the automatic pump right now, which as you know, will no longer be around. And so we had to switch to something new. And so this summer part of what we're doing is getting a bulk order Omni pad was amazing. That was one of the easiest transactions I've ever had. And they're giving, they're giving us one year's worth of pods to take back with us because we don't have an address here that they can ship to.

Scott Benner 50:32
So so cool. Yeah, they're working very hard on getting into like, they just sent a group of people to the UK to start work to start working. I know

Michelle 50:42
I heard that. Yeah, they tell me though, so maybe you can find this out for me, they couldn't tell me if the European Omni pod will be compatible with us in pod because, as we were saying, in Europe, and also in Canada, they measure blood sugar differently than in the US. And so, although we're coming with a one year supply of pods, I thought, what if something breaks? Or what if her or PDM breaks or something? And like, what if I just need a part? Is it possible I could go to the European army pod and just get apart if I need it. But they couldn't tell me if everything's going to be compatible or not? Well, um,

Scott Benner 51:19
I don't know the answer to that. But I can tell you that that new PDM, that's gonna be out pretty soon, as soon as the FDA is done fiddling with it and looking at it, it's gonna be really inexpensive. So I don't know that it would be cumbersome for you to have an extra one. Because it's really just gonna be an Android phone shell like you don't I mean, like, it's there. The reason they switched to it partly is so that they can make, you know, upgrades and move innovation along quicker. But it's also because the, you know, it's not gonna really cost anything. It's possible, Michelle, that by the time I come back to edit this episode, and put it out, I'll be able to say something at the end that people would really like to hear that.

Michelle 52:03
Yeah, it would just be interesting to know if the if they'll be compatible. I guess my my question would be, you know, if they measure blood sugar differently, do those pods talk differently to the Pdn? Right. Yeah, I don't know. It's something Gaucher. So nobody knew there. But anyway, it'd be Yeah, just be nice to know if they would be a resource for us it out here. But anyway, but that's why we come with a year's worth of stuff. So that if, if we, you know, start to run low on something, hopefully we can make a plan before we've run out, because we have the whole year. And then I know like we have Dexcom. And they also were able to help us get a year supply of stuff. We've done that with them twice. Now, that was not quite as smooth of a process, as with Omni pod, but I now have really nicely I won't say her name. But there's a really nice lady at Dexcom. Now who knows me very well, and who were I work with her exclusively now and doing our orders. Because when you want a whole year's worth of stuff, you just can't go through the normal channels, typically, with Omni pod that was surprising. I didn't have to ask per supervisor or talk to anybody in charge. See Am I ordered to go through. So that was awesome. Usually, though, it takes several weeks of calling. And finally finding someone at the top of the food chain, who knows the right overrides and can help me because our insurance is not the problem. They know we're overseas and they will help us navigate everything. The problem is usually the provider is not understanding this weird scenario that we're in and knowing that it will be okay. Your bill will be paid. Our insurance will work with you.

Unknown Speaker 53:38
I got you. Oh,

Unknown Speaker 53:39
that's interesting. Well,

Unknown Speaker 53:40
yeah.

Scott Benner 53:41
Is there anything? Is there anything because you had some pretty? I think I feel like you had specific thoughts. And I know, I held you back by not giving you things that I wanted to talk about. But this was a really good conversation. I think it was because we left it loose like that. So I am sorry.

Michelle 53:57
I was just wondering, I just like to really be prepared. I

Unknown Speaker 54:01
know.

Scott Benner 54:02
And I like you not to be prepared. So

Unknown Speaker 54:04
we can chat.

Scott Benner 54:06
I think it worked out really well, actually. But so No, I just want to I want to make sure that if you have any nuggets about being overseas or about travel in general that I didn't ask you about or we didn't get to that I don't I don't want to leave them out. You know, is there is there anything that you've learned along the way that you think people would really benefit from knowing?

Michelle 54:28
I don't know. I mean, that's a that's a pretty big question. I think Don't be afraid to travel. You know, don't be afraid to go somewhere. We we certainly were not ready to even like drive to Michigan for my cousin's wedding after when our winning was diagnosed our daughter. So because she got diagnosed in August, and there was a wedding I think in October, but we got Winnie's pump in September, right. So we had the diagnosis in August. Then we got a pump in like it was September, October, something like that. And then this wedding was happening and I October and we were not ready at all for a long road trip. At that point, we just didn't feel comfortable. And then you're also dealing with cake, and dessert. And all these things, you know that that can feel really overwhelming when you don't have a package in front of you. And you're newly diagnosed, you know, and you're trying to guess, and you're like, I don't even know how my kid's body reacts to these things. So. So, I mean, yeah, just being comfortable to travel once, once you're ready to, and that's different for everybody. But, but I think, you know, you can't be afraid to go somewhere. I know, I have friends here who are from the Czech Republic, who will not go anywhere with their kid on a plane, because they're too afraid that but they will go places by car, but they will not fly anywhere. And so I'm hoping they will change their minds someday, because I think they're going to they're going to miss out on so much. If they limit themselves that way. We know what

Scott Benner 55:53
are their fears about the plane? I don't like crashing the side of a mountain fears or

Michelle 56:01
no, no, no, no, I think it has to do more with access to supplies and going to places that are so far away, that they feel like they couldn't go to the pharmacy and get what they needed. And honestly, I don't know. Like, if you were to be someone who was like, from Europe with European insurance and like to travel to the US, for example. I think I would be kind of scared. You know, I was if you ran out of insulin, and you didn't have an insurance policy that someone took there,

Unknown Speaker 56:31
I kind of screwed. No one would know,

Michelle 56:36
it is easier to go the other way. It's easier to have us insurance and go into Europe. Yeah, because things are cheaper. So I think I think for them, it's just they traveled to places, you know, really close by where, where they know that how the game works. And they know that they can still get supplies easily. Yeah,

Scott Benner 56:54
I just imagine the the very fear of like, being somewhere being being a foreigner. And being in America and just having this lucky. Having someone from America looking good, you're not American, this doesn't count go away. And having that fear of like somebody can just discount you just because you're not speaking English, or from America or whatever it ends up being. But I don't know if that's an unreal, fear, I would I would feel that and I have to say to in the reverse being American, I totally feel like it's probably a completely pompous and Unreal thing, but I feel like I could just go anywhere and be me. And it'll be fine. And, and I don't know that other people get to feel that way all the time. And that's

Michelle 57:34
pompous and unreal. Yeah,

Scott Benner 57:36
I know it is.

Michelle 57:37
But you keep a low profile, or we are we don't want to call attention to our American

Unknown Speaker 57:42
American mess.

Michelle 57:44
We try to keep a pretty low profile, and we try to blend in and be respectful of the culture here. Yeah, but

Scott Benner 57:49
I'm saying generally speaking, I was kind of putting it on me for funny, but like, yeah, I think generally speaking, Americans have that feeling like it's everything works for us, usually. So when I go somewhere else, I want it to work for me. I mean, we've all been on vacation and seen somebody like stomping and going nuts and you're like, what's wrong? I asked for a drink 10 minutes ago, when it's not back yet. I'm like, really, that's what's going wrong. And but you know, like, you have that feeling like, everything's so automatic, and it just works here. You don't I mean, you want something you get it. It's it's within reach of you normally, you know, if you have a problem, there's someone to complain to. There's a system that, you know, there's a system in place that makes your complaint, something they have to listen to. And you know, it's just our lives are set up really well here. I don't know how much people could appreciate that there's other places in the world where that might not be the case.

Michelle 58:40
I think they are set up? Well, I just think it's really expensive.

Unknown Speaker 58:43
Yeah. Oh, no,

Michelle 58:45
the hard part is the expense of it. Because I think, you know, in Minneapolis, when we go to the endocrinologist, our appointments go relatively quickly, quickly, we have a scheduled time, and we get in usually on time, and it's pretty fast. But here you know, it's you kind of are like, it's like a cattle call almost, I guess a little bit. But, but it's like the flip side, it's so affordable. And if you have an emergency, you know, they'll see you more quickly. But if it's just like a regular, you know, diabetes checkup. It's very different takes a lot more time. You know, so I think we interact with, oh, maybe like four different people when we go to a diabetes appointment. So there will be someone who takes Winifred tighten weights. And then we go to a different area where someone downloads all the information from her pump and from her Dexcom and then we go to a different area where someone picks her finger and does her agency and we don't get the agency immediately. We don't get the results for like two weeks. And also it's not just like a little drop on a test strip. They take like a vial of Blood. So they do a big finger stick and take a lot of blood, and then you don't get the results right away. So it's not even really gratifying that, oh, you stuck my finger and look at all that blood, you know, then you have to wait to find out what they did with all that blood. And then then you go to meet with the diet pathologist.

Scott Benner 1:00:17
So he's got here, she has all that information, and then you kind of can pile it there and make decisions and talk.

Michelle 1:00:24
Yeah, like he gets all the data from the Dexcom in the pump, and he doesn't get the winsy right away. You know, he he finds out when we find out what they went see is that

Scott Benner 1:00:32
if my onesies come in the room before I'm five minutes into the the actual visit on like, this is taking forever.

Unknown Speaker 1:00:40
But you know what, yeah, but it but it's

Michelle 1:00:42
different than that's how I think that's like, part of the reason that they that the cost is so much lower. And and I appreciate that, you know, I think it's it's hard coming from a system where we get everything. So immediately, like you said, but but I think I really appreciate the fact that people can afford to take care of themselves. And

Scott Benner 1:01:01
no matter what, and when you're what you're really describing is pace of life and expectation like here. Yeah, right. I work really hard. Most of the hours of my life, I come home, I clean something, eat something pass out, get up and do it. Again, when I go to the doctor, I needed to go quick, quick, quick, because I got to get back to my fast paced life in progress. Imagining life's not as fast paced, it's okay, if something takes longer. And if it eats up a little more of my time, it doesn't matter because I don't have to run back to my rat race job to make enough money to pay for it to begin with. So yeah, it is an expectation about what like life balance, I guess.

Michelle 1:01:36
It is. And I think it's also an understanding of how the system works. And being prepared for it. You know, like the first appointment we went to, we weren't prepared for the wait time. So now I bring a coloring book for winnifred. Or I bring something for myself to do and my

Unknown Speaker 1:01:48
coloring book for you broke his

Michelle 1:01:50
elbow while he was here in our first year and head of surgery here. And that was a really interesting experience. And he had some of the same kind of wait times and his appointments and the first appointment he went to, he didn't know how long the wait time would be. And so he had to go to the bathroom. And he waited and he waited, he waited because he was afraid that he was going to leave the restroom, and they would call his name. And but now he will go with a book if he has to go, you know, for an appointment like like that. Because he knows that there'll be a wait. So I think it's also you need to understand how the system works. And it took us a little while to learn that because we definitely were frustrated in the beginning, you know, not understanding because they don't they don't tell you things that for them are given they don't explain to Okay, your appointment is at 915. But you're probably going to wait 30 minutes before they call your name. Right. Yeah, and you're expected to know that this is the system, you know, they give you the same rundown that they give to anybody else. Yeah. So, yeah, this takes a little while, I think to figure it out. But um, but it's okay. And you only go to the endocrinologist hopefully, you know, like three or four times a year. You're not having to go there every week. So it's okay. You can you can wait a couple times a year,

Scott Benner 1:03:04
you'll be alright. Oh, no, I feel that's a great thing. Actually. I like the idea of being a little slower paced and not rushing constantly. So I have one last question been wondering. Okay. The entire our winner. Yeah. Is it like from

Unknown Speaker 1:03:21
Winifred? Yeah, where

Scott Benner 1:03:22
did you get the name?

Michelle 1:03:24
Oh, um, she's named after my grandpa Frederick. Dhoni. If we were if we had had a boy, he would have been Frederick. But she was a girl. And so

Scott Benner 1:03:35
it's not it's not when aford It's when a Fred

Unknown Speaker 1:03:39
when a Fred

Scott Benner 1:03:39
right. Okay. And then yeah, cuz I was thinking, Wonder Years. Every time you said wow, like is this thing? It's like, Did this poor kid get her name through Netflix? Like that's what I was wondering if, if you were just a big fan of a television show or not. But you have a more thoughtful reason. Yeah. Which is more satisfying, by the way.

Michelle 1:03:59
Yeah, it's got some family family ties to

Scott Benner 1:04:02
it. Because a boy wouldn't have been Freddie for short.

Michelle 1:04:05
I don't know. Maybe as when he's when he have friends now who call her Fred. You know, our friend Jake. He calls her Fred. He thinks it's really funny. That she might be Freddie, you know, she can be shouted up at the front house doesn't mean she can't be Freddie.

Scott Benner 1:04:23
You are doing amazing things. You put your family in a in a really unique situation, and then you shared it here. I really appreciate you taking the time to this. People should know that. Michelle did not have Skype, she had to go to quite some distance to figure out how we could talk. We are in a major time difference. It's late in the afternoon where you are and it's early in the morning where I am. And so this really worked out well. And then just as we were getting ready to do it, I kind of lost my voice to what I think is allergies. But But I was really concerned I wouldn't talk and so I didn't talk as much this episode which for you, those of you who write me to tell me I talk too much, you must have been thrilled. And so this all worked out very well. But it had a lot of roadblocks. And I, I'm genuinely pleased that we got this one recorded. And I appreciate all the effort you put it on your side.

Michelle 1:05:13
Oh, it was nothing. No, thank you for the opportunity. I hope that there are people out there who are inspired to go travel or to go live somewhere new or to go, you know, do something crazy, adventurous, you know,

Scott Benner 1:05:27
diabetes really doesn't need to in any way impede you from doing any of the things that you can imagine.

Michelle 1:05:32
No, absolutely not. You need to plan more. But I think once you have your planning done, you're good to go. Ready for takeoff.

Scott Benner 1:05:40
So thank you so much for coming on and doing this. Huge thanks to Michelle for coming on the show all the way from Prague to tell us about her life with Type One Diabetes and all the traveling she does. Get out there people. Just go ahead, go somewhere. She went to Prague, you can go anywhere. Thank you dex comment on the pod for sponsoring the show, please go to dexcom.com forward slash juice box, or my omnipod.com forward slash juice box for more information. Those links are also available at Juicebox podcast.com. Or in the links of your podcast app. There are our show notes in there, push some buttons, try to figure it out. A quick thank you also to dancing for diabetes, though their ad run is over for 2018. I sincerely appreciate everything they did for the podcast. And I hope that you all got a chance to check out dancing for diabetes. If you didn't, here's a freebie dancing for diabetes, go to dancing the number four diabetes.com to check it out. Elizabeth is doing amazing things there. It is totally worth checking into. Hey, you want to talk about what's coming up for the rest of December? Let's do that real quick, shall we? I actually have it written down in front of me. And for those of you who know me, you might know that me writing anything down is a fairly incredible act. On December 18, you'll be hearing from Anthony Anderson from ABCs blackish. And to tell the truth, on December 20. You'll be hearing a q&a with Brett Christianson, the new CEO of Omni pod. He'll be responding to all of my questions, as well as the ones you left on Facebook and Instagram for me to pass on to on the pod. That's fun, right? It's gonna be a long one. Nice, good, really get in there and ask a bunch of questions left right answer him. It's gonna be good times. And then on the 27th. I'll be speaking with Chris Rutan about exercise, how insulin works, how insulin works around weight gain, weight loss, all that kind of like stuff that you know, you wish you understood a little better. Chris really understands it. And he's going to be on to tell us more. Then after the first of the year, season five of the Juicebox Podcast will begin. Last thing that I'd like to remind you about, if the podcast is helpful to you, please help it to grow by sharing it with someone else. It really is incredibly difficult. I can't afford advertising for the show. And so it is very word of mouth. You are the ones who help it grow. I really appreciate that you do that. And I just want to remind you to keep going because, you know I love it. And I want to keep doing it and I want you to keep getting it. So share, share, share

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Scott Benner 12/3/18 Scott Benner 12/3/18

#197 Working Holiday

Czeching in with Alena….

Alena is from Czech Republic but is going to school in the UK. She lives with type 1 diabetes and is on the podcast to tell us here story.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello, and welcome to Episode 197 of the Juicebox Podcast. Today we go over the ocean to talk to a lenna. This episode of the podcast is sponsored by Dexcom on the pod and dancing for diabetes, you can go to dexcom.com forward slash juicebox. My omnipod.com forward slash juice box, we're dancing, the number for diabetes.com. All these links are in your show notes at Juicebox podcast.com.

Alena 0:31
Hi, I'm Elena. I'm from Czech Republic, but I live in United Kingdom and I'm a type one diabetic from since I was 15.

Scott Benner 0:40
To How old are you now?

Alena 0:41
I'm 22. Now

Scott Benner 0:43

So you're, that's easy. How easy is that? And so I'm seven years with type one since you're 15. Now you were How long? We were born in the Czech Republic? How long did you live? Until school? Oh, well, no, like,

Alena 0:59
until I was 21. So I moved to the UK to do uni. Which I'm still doing now. Right?

Scott Benner 1:07
So you've only been the UK for a year going to school?

Alena 1:09
Me is free? Yeah, three years? Oh, no. Oh, well, yeah, let's let's forget the mouse. Oh, I'm in England.

Scott Benner 1:19
We should definitely forget the math. That's a great idea, actually, because diabetes goes much better when you forget the math. Here's one thing you don't want to forget. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making changes to your medical plan.

You were in Czechoslovakia when you were diagnosed?

Alena 1:47
Sorry, not Czechoslovakia. It's late. Yes. Just call it check. Cho, I know you're you're from America and probably mainly the people from America. So Czech Republic is a small country in the center of Europe, and it's next to Germany, which you all probably know.

Scott Benner 2:04
You are assuming a lot but I appreciate your confidence. Okay, so you're diagnosed there? What was it like being diagnosed there? Right.

Alena 2:13
So my diagnosis was at the beginning of school. Yeah. And, and because it was like that. It was in September, and I will go into a lot. I'm very thirsty. I definitely lost weight. But I didn't notice I was definitely tired. But I was blaming going to school again. And so me and my mom when she was just a practitioner. So we thought it may be some kind of infection, or something like that. And we went without a breakfast because you know, you should do that if you're getting blood tests done sometimes. So we expected that and the doctor checked my blood sugar. And it was Wait, I've got a table here so I can speak in your unit. It was around 206 7270 and what

Unknown Speaker 3:07
what what is it your measurement? 15

Alena 3:11
Okay. Yeah, let me see, like the point something is not that important around 270. Yeah. 15 plus something

Unknown Speaker 3:17
really high. Oh,

Unknown Speaker 3:19
yeah. Yeah.

Alena 3:19
I mean, it's, it's not that high. But it's high for a healthy person. Sure. And so I was sent to the hospital without the doctor actually telling us what's wrong with me. And yeah, yeah, it's not there are

Scott Benner 3:36
so you go to the doctor feeling pretty horrible. He

Alena 3:41
feel that fat. So I was an MBA. So like, yeah, we associate go to Tata. Okay. Okay. So you've got,

Scott Benner 3:47
you've got all these weird things going on. You can't quite put your finger on. And the doctor tests your blood, gives you a blood test. And then without giving you any other information says, Hey, I think you should go to the hospital now.

Unknown Speaker 3:59
Yeah, yeah, yeah.

Unknown Speaker 4:01
Did you drive yourself?

Alena 4:02
No. So I was with my mom. So but we can drive from the age of 18. So my mom was driving. And then I think they took my blood and the doctor. I remember her she wasn't nice or comforting at all. He was like, dude, your daughter has diabetes. And that's it. It's forever. Yeah, and my mom was really upset and sharp. But her so we don't have diabetes in my family, but a dark type two diabetes. So she thought, Oh, no, she'll have to take pills and be on a diet for the rest of her life. She didn't even imagine injections.

Scott Benner 4:45
Yeah, how great would it have been if it was just pills a diet actually right.

Alena 4:49
Um, I have issues to be consistent when taking pills here like some supplements. I mean,

Scott Benner 4:59
I'm so interested in In the car ride from the doctor to the hospital. Did you guys remember that? Let's say it must have, like frazzling. Right? Like, yeah, yeah. Why are they making me go to the hospital? Like that

Alena 5:10
was I mean, I don't think I was questioning, I was just like wanting to know what's going on. Okay. But I'm not sure how it how it goes in America. But for me, I had to be in the hospital for five days. Even though I was in MDK, it was the transition from dorm life to taking injections.

Scott Benner 5:33
So it's sort of like a, it's like, it's like a diabetes, diagnosis vacation, you get to hang around the hospital. While they let you know how everything's gonna work out. So when you leave there at 15 years old, are you what kind of technology or what did they give you do? Oh,

Alena 5:49
so it's not going that? Well. I was given pens. So at that point, it was that you fit change the pencil with insulin. So it's like the one that you can disable two to two bits and just change the pedophile. And basically, because I was, well, it was a month before my 15th birthday. I was actually born. But yes, was close to that. I was, even though my parents about that, for a lot of explaining, I was the one who was going to be managing my diabetes. And my parents actually never gave me an injection.

Scott Benner 6:32
That must have been strange, right? Like, did they just make an announcement? They were like, Okay, this is yours. You're gonna take care of this.

Alena 6:39
condo? Yeah. So in the I remember, it was the syringes of plastic one first, and then we transition in Japan. And then they originally plan that I can't leave hospital without my parents in check to me at least one. Okay. But somehow, that didn't happen. And no, no, it wasn't like they mentioned it, but then no one really cared that much. And then my, so for my mom, it's like injecting the child. So was never keen on that. And she's quite sensitive. And for my dad, he never was interested in injecting me. And I never asked him to, because I feel like, you know, my dad's got big hands. And yeah,

Unknown Speaker 7:29
it's gonna be clumsy with it.

Alena 7:31
Yeah, yeah. So I left with two pens, due dates with insulin and with leukemia. That was there. And so the insulin, I'm still actually on the same insulin levels. And it's, so it's London for the long acting. And and I just forgotten the name of the daily one. Let me

Scott Benner 7:58
absolutely do not worry. The other day I I searched for a word during a conversation, and just could never find it and had to eventually bail on it and just say to people, I'll think of it later and walk away, which was incredibly embarrassing.

Alena 8:10
But so the other one is actually x rapid, which something you've probably never heard of. And it's not the fast acting one, but as a regular one, which I found out about quite recently. So for those who don't know, and it's last up to like, seven to eight hours. And it takes about seven minutes to start working.

Unknown Speaker 8:33
And you're still using? Yeah, Can you spell it for me?

Alena 8:38
Yeah. Oh, hello. So it's AC t. r a p. d. Accurate? Yeah. I'm googling. I'm sorry.

Scott Benner 8:55
So yeah, everyone agrees googling on a podcast is very, very exciting. Okay. So yeah, UK unit solution, human

Alena 9:04
action. So it's more complicated, because you cannot. So I still had the pen. I got seven years ago, I changed the pedophile. I mean, it's quite a good one. Um, and I still get my income from Czech Republic, right. Oh, that I'll get to that later. Okay. Well, let

Scott Benner 9:23
me just jump in for people who are on on the not European side. When Linda says pen fill she means she's talking about the cartridge that goes in. Oh, yeah. Right, which is called Don't worry. I just want to make sure everybody's following along. And, and you get your insulin from the chair from fun. Okay. All right. So do you live by yourself in the UK now? Because

Alena 9:48
I'm listening to them with three girls.

Scott Benner 9:51
Okay, that sounds I don't know how that sounds. Is that any good?

Alena 9:55
All right, because I've got my own room. Okay.

Scott Benner 9:58
That sounds okay. Then. So why do you Why do you? Alright, hold on, let's slow down for a second because my mom was my mind just raced ahead of the story. Okay, so you you've got this insulin, you've got the glucose, you know, the glucose meter. And, and your, your parents are not really getting too involved I would imagine law to count carbs, or were you just oh

Alena 10:19
yeah, so I will say, oh, that we call them exchangeable units, or cops, that one unit is 12 grams of carbs. And so you have this meal plan, for example, that for breakfast, you have four units, which is 48 grams of carbs, and you can theoretically eat whatever as long it's 48. Breakfast.

Scott Benner 10:45
So you shoot the insulin, eat the food, when do you ever check your blood sugar after that?

Alena 10:51
So what also was to check my blood sugar just before main meals, and then before sleeping? So four or five times a day? How did that?

Scott Benner 11:02
How did that how did that end up working out? Like? Do you get your a one c checked on a regular basis?

Alena 11:08
It will look complicated not to.

Unknown Speaker 11:11
Okay.

Scott Benner 11:13
So good. Well, how did you find that process of checking four or five times a day and just shooting and then in then doing the car?

Alena 11:21
I was taking a choir. Right? So I'm quite sensitive to high blood sugar levels. I don't really get any symptoms. Not that I know. And even though I was told to in the Pre-Bolus. I never seen it about we will get to by that time I've never seen it sounds like oh, well, whatever. And and I wouldn't Pre-Bolus really which I understand is not ideal. I was doing it and for and I thought it's working. But my parents didn't have any real input. But there and by the end of when we call them something else up. My endo was. So she was looking in like a paper diary. Well, right, my blood sugar levels. And but so it says I was filling it as I was going. But eventually I would fill it the night before the appointment of

Scott Benner 12:21
making up some numbers, or did you actually get the numbers from your meter?

Alena 12:24
Oh, the plan was to get them from the meter. But there was one more issue. And so but even though my parents were not really involved in like the decisions of how much insulin and so on. And so there was a situation when I was home, and I were getting lunch, and my dad asked me what my blood sugar level is. And sadly often I mean, certainly from my point of view now, it was around 200 to 50. And sometimes it would be my fault that I was like snacking or something like that. But often it wasn't Oh, no that was ever with us. It'd be my fault.

Scott Benner 13:07
You were doing what you expected was working. Your blood sugar's still going.

Alena 13:10
Yeah. And my dad would say, oh, that high with like a very specific reaction. And that was causing me some kind of anxiety. So I went in in such situations, I would be like, No, it's all right. And I wouldn't tell it to him. And then my dad was the one who was driving me to my endo, and was still in the room. Okay, so to avoid the this is reaction, I was lying to my endo about my numbers. And that went for a few years. And so I can't really recall any agency numbers. But I was always so mad. Alright, I like and until recently, I never cared what the number was exactly. But as long as I said, Yeah, it's still good. I was fine with it.

Scott Benner 14:06
The holidays are here. And it's the time of year when you're thinking about other people, but you can't let that get in the way of caring for yourself. So if you've been thinking about taking better care of yourself, thinking about making an upgrade to your diabetes care plan, don't let this holiday season slow you down. It really will only take a moment today to go to dexcom.com forward slash juice box to find out more about the continuous glucose monitor that Arden has been using forever. We talked about it here all the time. But ardens a one C has been between 5.2 and 6.2 for five years with zero food restrictions. Much of how we accomplish that is with the data and the information that comes back from ardens Dexcom g six. Now you're going to love the arrows that tell you what direction your blood sugar is moving and you're gonna love that those arrows tell you how fast your blood sugar is moving. You're gonna love seeing the trends and how insulin and foods affect you. You're going to take all that information, and you're going to make better decisions tomorrow than you made today. Those decisions are going to keep your blood sugar in a more stable range. Before you know it, you're going to have that agency as well. Do yourself a great favor, go to dexcom.com forward slash juice box or click on the links in the show notes or Juicebox podcast.com. Go find that freedom. Go find that confidence. Back comfort, make this a wonderful holiday season. Make it the time you decided to make a change. I know you feel busy right now, but you're never too busy for this dexcom.com forward slash juicebox. Results mentioned are ours. Yours may vary. Those visits for you weren't so much about like figuring things out or fine tuning your health. It was just about going in and having somebody not be completely disappointed. And if they weren't, if they were like hey, right on, it's not so bad, then you'd leave and go, Oh, it's not so bad. I'm good. Right? Okay.

Alena 16:12
Remember the numbers, but I think it was some somewhere around eight, which is like, not so bad, but not what you want.

Scott Benner 16:21
And I hear what you're saying. I do understand that.

Alena 16:24
So that was one point where they started downloading the numbers from the meter. And I had a discussion with one diabetic nurse because she was diabetic too. And she was like, hey, these numbers don't match up. So I had to phase it.

Scott Benner 16:42
Did you go? Did you go? Oh, they don't that's crazy.

Alena 16:45
So So I panicked. And I was like, I want to speak to the nurse in the room without my dad.

Scott Benner 16:53
Okay, so yeah, you can fast you were like, I'm gonna confess. My dad. I gotcha.

Alena 16:58
Yeah, yeah. And then, so and then something else happening. I was low in iron. And so as far as like, my usual blood test, doctor would check for both all the markers that are for the celiac disease. And I was told there are people with celiac disease has like numbers around the hundreds or even thousands and minds were like 30. So she wanted me to go to the thing when you swallow a tube and they look inside. That's one, you know what I mean? Um,

Scott Benner 17:37
Journey to the Center of the Earth.

Alena 17:42
The name is not important. And I was like, I'm not doing it. I'm fine. I don't have any problems. I'll take iron supplements. And then when I turned 18, I change the doctor. And they were like, Hey, you need to get this checked. And I went to that horrible experience. It takes five minutes feels like five years. And they found out I've got celiac disease. And so they also take a biopsy sample off, I feel. But I think it's got a lot show a bit of terminology. Sorry.

Scott Benner 18:19
Take something inside of you.

Alena 18:24
And then it takes two weeks. So I was like, Okay, cool. I'll go two weeks to have pizza, pasta, whatever I want to say goodbye. Okay. If

Scott Benner 18:35
you want to break up tour with food.

Alena 18:39
I didn't get that though. My parents are meaner. And we were walking back to the car and we got called back from the office. They're like you have to come back. And they because there is a camera and they seen that it's definitely a celiac disease and they were like you have to start eating gluten free immediately. even make it to the parking lot. Okay. So for about six months, maybe longer than that. I was eating gluten free and I will pain India and sorry, but

Scott Benner 19:18
with your accent nobody will hear it. It's fine. I completely understood you actually once in a while you sound like Adele to me. Isn't that interesting? Cool. Yeah, I think No, no, I've seen a demo Live in Concert and once in a while there's a couple of words where it sounds like that to me but I have a fairly I don't my ears not great for accent but it is it I can understand. I can absolutely understand you don't work? Yeah, I'm just saying we can we can like later I could lie and say she didn't say

Alena 19:52
okay, okay, so, um, so yeah, it was really annoying and there was nothing changed. I didn't feel worse either. through there. And I was like, I can't deal with this. And so then this is why, one of the reasons why I want to come to the podcast because I wouldn't tell people not to do it.

Scott Benner 20:13
I am proud to be sponsored today by dancing for diabetes, until a cure is found dancing for diabetes will be there for all of us good at dancing, the number for diabetes.com.

Alena 20:25
And if they get diagnosed with celiac disease, please eat gluten free. And so after about six months or so, for pizza, I didn't die. Sounds like yeah, let's let's not do this animal. Eating normally again, she just gave you just gave up

Scott Benner 20:43
and went right back to and what also what happens? What happens when you eat using pizza as an example, when you eat pizza, and you have to see like, what what happens? What, but

Alena 20:52
me personally, I've got the type of celiac disease that I don't have any symptoms other than lower iron. But basically no. So in your gut, you're it's autoimmune disease. And basically, your body is reacting to the gluten in inflammatory response. So not only it's bad for your body that you are in it, but it's inflamed all the time. But so in your gut, it sat inside, it's wrinkled, I don't know if you know that I didn't know that inside, it's wrinkled. So the surface is bigger, and you absorb more nutrition. However, if you have celiac disease, and you eat gluten, and how is your body fighting with it, that it gets moved, and you don't absorb nutrition and nutrients?

Scott Benner 21:49
So So what's happening to you is while you're eating and not having any symptoms, like like, say like, you know, stomach, and other people do have, you're still not absorbing the correct amount of nutrition. So when you eat foods your body can deal with, you're hurting yourself in other ways.

Alena 22:04
Yeah, yeah. So I don't know about it. And it's, and it takes a lot of time for it to heal. So it's not like weed without gluten will help. Okay. And so for a couple of years, I was normally eating gluten until last summer. So I went to the I went to Greece for this thing, body and stuff. Details Allah important power sake. And I will throw it up and diarrhea. I was like, I'm not letting anything ruin this. However, I've got quite strong stomach. So I was like, wait, I'm throwing up. This is. This is not like what my body does, whenever I'm sick. And here I would also like to say that I was naive, and I saw the decay is only for newly diagnosed people. So I didn't really care about DK. That's interesting. Okay. Yeah, yes. Yeah. No, no.

Scott Benner 23:08
So you're at a, an extra let's call it a party in Greece.

Alena 23:15
Working Holiday. Yeah.

Scott Benner 23:17
Working Holiday, right, which might be the name of this episode. So you're, you're on a working holiday and and things are ingested. And you and so you get very sick. You're now sick in a way that you're not accustomed to with your celiac.

Alena 23:36
Yeah, yeah. Okay. Yeah, definitely.

Scott Benner 23:38
But because of the trip, I want to make sure I understand and the fun that was trying to be had. And you're feeling that you have like a strong stomach. You were going to persist and just keep doing what you were doing.

Alena 23:49
No, no, you gave up. I like generally have a strong stomach. So it was suspicious down throw it up. I see. Yeah. So I was meant to be there for four weeks. And after like two and a half star was that it started getting sick. But in Greece on the islands, you are not allowed to drink the water because I don't know. It's just not drinkable. Okay, so I thought maybe in the tricks I was getting, they made the eyes from the top water to save money. I see. So it could be that yes. So when I was that I went to like two doctors there. I was on a trip for like two hours because I was obviously dehydrated. And I did it so it's just that water bug or whatever it is. And I was like, I don't see well. I've got antibiotics from her which I can't be on somewhere. And I was recommended to eat just plain food potatoes, pasta, bread, and he and I was like I can't have this here. There is no point so Aaron just like to go home and I was already feeling weak. So I would get slightly dizzy or I would have to like, slow down. And I got home and my mom told me I looked terrible. And never like, do you want to go to the doctor? I was like, No, that's all right. Today, we'll go tomorrow to just do practitioner. And so I spent one night at home. And I went to my practitioner, she sent me to the hospital again, she was like, This is not looking good. And they kept me at ICU for two weeks.

Scott Benner 25:29
So what had happened? Were you just was your situation, just grading because you weren't taking nutrients?

Alena 25:36
No. So I was in the UK. And because I was eating gluten, even though I knew I shouldn't be. My body was holding up for a long time, but still wasn't getting the nutritions. It needed. It was holding up, hold it up. And then I went to Greece, and the change of conditions was like the last thing. And it all went down very quickly. And I was very, very lucky that I didn't end up with any consequences out of that.

Scott Benner 26:09
Yeah. Yes. Because you're away from home and out of the country. And but yeah,

Alena 26:14
you're like, I got to the hospital, and they took my blood and addicted. Look was looking at the paper and he was like, I'm surprised that kidneys heaven. St. Louis. Oh,

Scott Benner 26:24
that's fun to hear. What were you were you testing your blood sugar during this time on your own?

Alena 26:30
Yeah, but like, until last summer, my approach to diabetes was like test, inject whatever. And I didn't really care much. I was like, yeah, this is working. I mean, yeah, I'm high. By working.

Scott Benner 26:42
You meant I haven't fallen over yet.

Alena 26:44
So I didn't feel bad. Yeah. Because I don't know. Maybe it's because I was, I often I lose my symptoms for symptoms for being high. And by high I mean, like, around 200. And I was like, yeah, this is fine. I mean, I didn't see it as an issue. And then, yeah, it wasn't really bad. But I thought it's working. But something changed in hospital, and I can't say what, but I thought I'd been interested in diabetes. And then I joined some Facebook groups. And then I found your podcast. And yeah, so my main message is, please if you got diagnosed with celiac disease, and even free even though it's horrible, and some of the tape is, is tasteless, it's it's important, really, I mean, I was really lucky. And I was also in the UK so you know, if I would test it so what and no one told me that one time if

Scott Benner 27:48
you are not a good salesperson for gluten free, you're like, free even though it's horrible. That's not a good sales, I would not look

Alena 27:59
that many more options. And it Czech Republic and Czech Republic. A lot of that food is in boxes, make. Make your own bread, make your own muffins, which is something I'm really not interested in. Is it 22 year old person?

Scott Benner 28:14
Yeah, looking to be baking while you're at school.

Alena 28:19
But yeah, I mean, it's totally doable. All right with it. Now I'd pet some kind of like rebellion

Scott Benner 28:25
block. No, no, Tommy, let's look. Let's look back for a second though. You're in the hospital after Greece. And you said you don't really know what happened. You just started being more interested? Can you dig deeper into yourself for that? Like you You really don't know what about that situation that just made you say, two weeks from now on the pod is going to be back on the show. And we're going to be interviewing them about what's coming up with their new dash, PDM horizon, artificial pancreas and everything that's coming in the near future. Two weeks should be enough time for you to get a free no obligation demo pod from Omni pod right now. So you can have that experience tucked away in your hip pocket. When you hear them talking about what's coming up. By then you'll know how simple and easy it is to put on and on the pod and how while you're wearing it, you don't even notice that it's there, you'll start to really think, wow, I can get an insulin delivery without injections. And I don't have to be connected to any tubing. I don't have to have a thing clipped to my belt or stuffed in my pocket jammed in my bra. This controller is connected by this long piece of tubing that goes into infusion set like every other insulin pump. I don't need to do that with on the pod because it is absolutely tubeless you're going to understand all of that and they're going to come in they're going to tell you what's coming up really soon. Your excitement level is going to go boom through the roof. And you're very quickly very quickly going to be like Bobby but hurry up Get me out the enemy pots. I gotta get involved, baby. This is my time. That's what you'll say. I mean or something like that in your own voice. Maybe you'll just go hey, you know what I really like this and sometimes I'm gonna get it. Maybe it won't be all fireworks and flowers, but I'll tell you what it will be. It'll be tubeless. And you'll have the ability to change your basal rates have extended boluses go swimming, and shower while you're getting your insulin, play all kinds of sports, and never have to disconnect my Omni pod.com forward slash juice box with the links in your show notes. Do it right now. Get long before they come back on the show.

Alena 30:30
So I was told by the doctors I could have died, which is something I have processed completely yet. I said when when the doctors were getting my button. Hold on. I was seriously seriously malnourished. The word? Nurse Yeah, yes. Yes, Mother, we're sorry. That was a thing. So for the first few days there, I wasn't even getting food. All the food was coming to me through through drip. And I'm also listening to your podcast and talking about hospitals. And like after after that I was doing a podcast and looking back, they don't know what they are doing with diabetes either. They wouldn't Pre-Bolus they wouldn't check between meals. Um, but yes, something really change. And I'm grateful for it. Because some Facebook groups are browsing, it's just coming up to America. No. Monitor.

Scott Benner 31:37
Give me a second. You broke up there for a minute and I'm gonna I'm gonna disconnect the Skype and call you right back. You're in the hospital and you found something that I couldn't hear what you said.

Unknown Speaker 31:47
Like, oh,

Alena 31:48
yeah, I'll say I'll follow found. flaws. People monitor a freestyle Libra freestyle Libra.

Scott Benner 31:53
Okay, so you like a glucose ma?

Unknown Speaker 31:58
flash glucose monitor.

Scott Benner 31:59
Okay. Okay. And so is this a finger stick one or the one you hold up and get a reading from?

Alena 32:07
But it doesn't have a lot. You have to swipe it.

Scott Benner 32:10
Okay. Okay. So it's, I guess they we call a dexcom, a continuous glucose monitor. Then this one is a glucose monitor. Yeah, you have to hold something up to it. And then it gets a reading from it. But you don't have to do finger stick. So you found that it's not what do they call it the? Is it Libra Libra or something.

Unknown Speaker 32:30
I don't know what they call Libra. Okay,

Alena 32:32
I'm not sure. Yeah.

Scott Benner 32:34
So it's a glucose monitor. But it's not continuous. You have to take, like you said, swipe something past the install, and then it gives you the number so you get a hold of that. And how does that change things for you?

Alena 32:46
I think it's life changing. So I'm from listening for you. I would love to have Dexcom. But we are already both my parents are helping me with money because some final year and I don't have time to work right now. So, um, but we are paying for it ourselves. And so Dexcom is more expensive. So I mean, I would welcome the alarm. But this is already life changing enough.

Scott Benner 33:11
It's It's It's a good step up. It's it's Yeah, it's not the whole thing, but it's a lot more than you had before.

Alena 33:18
In insane. It's incomparable because like, when I when I got it, I think I had like a flu or something or holes. So my blood sugar was all over the place. And my insulin sensitivity was very low that needed more insulin. Okay, yeah. And so that will start but when I first got that, like bright line, overnight, I was over the moon. And it somehow motivates me more, because I see the number when before I checked my just finger steak. I'll see the number put it in my back in my back. But now I see all the time.

Scott Benner 34:02
So you being able to see the your blood sugar in in more real time situations. You feel like hey, it's going good. And it motivates you to keep continue and then when it's when it's not going the way you want. It doesn't it doesn't get you down. It just motivates you to get back to the other space.

Alena 34:21
Yeah, definitely. Yeah, like I just my, my approach to my blood sugar levels changed because I want to see that bright line four. I wanted to see it in in my range. I've got set that and also so I had a couple of things a day or two without live with a last like five months. And I was like yes, I want to be late. I'll pull up my tables with with your numbers are about to be at about 70 to 90 at least overnight. But I can't do that. Finger sticks because what I'm 70 to 85 I don't know where it's heading. And I can't be hanging out around that when I when I don't know where it's heading right

Scott Benner 35:11
if you don't see the information coming back to you. Yeah. 85 could be 85 and falling. You can't just walk away and go.

Alena 35:17
Exactly.

Scott Benner 35:18
It's funny you say that I just look, you made me look up. Arden's blood sugar's 84 right now.

Alena 35:23
Yeah. It's amazing. And I'm happy with that when I when I see what's going on.

Scott Benner 35:29
Yeah, it is a cool, I You're making me look now. So I'm looking at Arden's last three hours on her Dexcom. And she's been, she's been right at 84 between 90 and 84 for like, three hours now. It's just it is it is really comforting in a way that's hard to put into words really get you know, because then you feel like you can be more aggressive or, you know, sit at a lower number, because you feel like, well, if it falls, I'll you know, I mean, you don't have alarms with yours. But so how do you handle not having alarms? You just kind of swipe it more frequently?

Alena 36:03
Yeah, so I think I might be around 50 times a day, it was, it was hundred when I got it, okay. Because I Pre-Bolus. And if I have time to wait as I swipe it until I see the number changing number i'd heading down or heading down and until it's where I want it to be. So as you are describing the arrows for Dexcom. We've got just diagnosed dogma up dogma down, right? Or right up straight down.

Scott Benner 36:38
I see. It's, so is it if Okay, so if you were in a different financial situation, you you would want to see it be able to say constantly without the swiping.

Alena 36:49
So this my thing is not that. I don't mind swiping, but I would prefer alone. Because sometimes when my blood sugar like goes up overnight, and I, I see it at the morning, and I'm like, Oh, wow. But I wish I could rap to it faster.

Scott Benner 37:06
Okay, so so I've always kind of contended the LIBOR for me is like testing your blood sugar with a finger stick without the finger stick. Because you can say to yourself, I want to know what my blood sugar is and pick something up and No. And but you don't have to poke your finger bleed or anything like that, which is an amazing. It's an amazing leap from from finger sticks for certain. Do you still use finger sticks, though?

Alena 37:33
Well, if I don't feel so in UK, I think you are allowed to doze off of Libra, which I would do, even if it wasn't allowed to be honest. But it's accurate. It's accurate enough, because you know, as you discussed already many times, there is still some allowed error in both monitoring and fingerstick. So I think I think only when I feel different than the number sir. And that's about it. I didn't. Yeah, I didn't put my finger for a couple days now.

Scott Benner 38:11
So well, no kidding. I would say that I'm pretty much right there with you. I was I've been dosing off of Dexcom. Before the FDA, you know, before the government said it was okay. So, you know, once it's once I trusted I you know, you can trust it that you know, it's interesting. And then like you said, when you're not sure, or you don't feel right, then test and figure it out. Well, that's all so how many months? Have you been into this new way of thinking? It's not long, right?

Alena 38:38
Oh, yeah, it seems like last August, I started looking around and, and I've got a Libra in November. And I don't want to be without it anymore. It Yeah,

Scott Benner 38:50
it was interesting. You were all those years with just sort of like, Okay, I'm you know, I feel okay, and whatever the numbers are, I don't really mind. Then you have this one moment. Do you think it's a little bit about maturity? Or do you think like, you don't even like because the age where you hit you? I always wonder about that. Like, is it just do you think about life differently now that you're older than you did when you were younger?

Alena 39:16
Yeah, I think it was because diabetes got into my life. When you are like rebellious. I feel that play the path that I had to find my own way to thing. And now I'm finding that more and more what my mom told me to do. And I was like, No, I'm doing it my way and then now coming to the five that was right.

Scott Benner 39:42
There's not many stories in the world is their children, children not listening to their parents is definitely one of them. It is a you do I find myself all the time looking at my children thinking that one of the only things I have for you that is a very real value is the benefit of my experience. You know, it's hard to find a way to in just regular life, to say something to your kids in a way that they'll pick up and accept and find important. But when it comes to this medical stuff, and it's so constant and annoying and irritating like diabetes is, I don't know, it isn't. It just seems like a really difficult thing. There are times that I think, I wish Arden wasn't diagnosed when she was so young. Because, you know, it's more time for her to live without hopefully getting complications later. But at the same time, there's part of me that thinks it is really great that she doesn't remember not having diabetes, because then some of the things we do that are really irritating. They don't strike her the same as they would if she if she was diagnosed when she was Yeah, Yeah,

Alena 40:47
Yeah, I agree. Yeah. And then I would like to get to why I'm getting my insulin from Czech Republic,

Scott Benner 40:53
I would love to know why you're getting an amazon.com there, that works better. Oh,

Alena 40:58
no, no. So because I've got here for my unit. And then the first time I went home was after three months, which was just about right. And I went to my check, and I got insulin. And so but in Czech Republic, insulin is fully covered by the insurance. However, it's different with stripe. So once you turn 18, you get only 1000 stripes per year from from the insurance and rest you have to paypal. Okay.

Scott Benner 41:33
I don't understand the free stripes. But is that Oh, no, like fingerstick fingers. Okay. Okay, so you get like 1000, you get 1000 test strips. That's good. Yeah. Right. And then over the overtop of that you'd have to pay cash. Are they expensive?

Alena 41:48
Um, bye. Sorry. I think it's about $20 or 50. Okay. Ah,

Scott Benner 42:01
that's under the cost here, I would say. But it's still it's still a lot if you're using a lot. But you're not really using many fingers. At this point.

Alena 42:10
No, well, yeah. But before that, I was still using just five a day. So it wasn't that expensive. So unless they she was allowed to prescribe me insulin for like a longer period of time. And so yeah, I mean, I pick up with insulin, return from home, basically. But so recently, because you were talking about insolence, and I was thinking about which insulin I'm using, I found out that no one's using the engine. And I am and I was like, wait a minute. So I will want to change that soon. Because what's annoying about this one is not only the load stuff, like half an hour until it starts working. But also, there is like a second, a second, like a lot of detail, I think about two or three hours in it. Like it catches a second breath and came swaying again. Yeah. So. So that's, I feel like that's why my diet will set around that around the unit. So that was like I was like compulsory snack. I think that was like, up until now, I feel my endo asked me how many units I'm taking for like my meals. And I'm like, I don't know exactly, because it changes by the meal, right? Like, I'm okay. You're

Scott Benner 43:37
starting to move towards that idea. But you are going to get slowed down by the way your insulin works. Like if you want to continue kind of trying to embrace the stuff I guess that we talked about here on the podcast, you are going to need insulin to doing that.

Unknown Speaker 43:51
Yeah, right.

Scott Benner 43:52
Yeah. Be different insulin.

Alena 43:55
Yeah. Yeah, I think so. I'll be looking into that. And when it comes to pumps, so what, on my last endo appointment? It was midsommer he brought it up. Oh, have you been thinking about it? Um, but I was like, I was actually Bob not to be entitled by the insurance. And he was like, Yeah, yeah, it's just a matter of sending a letter somewhere. And I would definitely and but it takes three days in house. I think she needs to, like adjust your, um, they they keep you in the hospital to uh, to make adjustments to like your insulin to carb ratios, your basal rates and all that stuff. They don't just give it they know what carb ratios are. They're asking me how much

Scott Benner 44:46
Oh, no. Yeah, I guess so. Right. Well, listen, I I'll tell you right now, if they would give you a pump. I think you could figure it out on your own pretty easily.

Unknown Speaker 44:55
Oh, sure about it. Yeah.

Scott Benner 45:02
Don't forget to go to dancing for diabetes.com dancing the number four diabetes.com. Just type it into your browser, you type in dancing, then the number four, then diabetes, and then dot, which is a period, and then calm. Is it a funny we call a period a dot? But it's a period, why isn't it dancing for diabetes period calm? I guess because that sounds stupid. Okay, so just calm that the doctor mentioned a pump. And you were like, yeah, right on. I'm thinking about a pump, too. But what are the impediments?

Alena 45:38
Last December I went, I went back to UK and I've been that allow for four months. And so I want to stay in England and work here. Which would mean I would lose it, like automatic insurance in Czech Republic. So there is an option, I will have paid out of my own pocket the insurance. And then the pump will come with that. And then I'll have to be flying there for my supplies. Literally flying.

Scott Benner 46:07
Wow. So if you stay so if you stay in the UK, you're not a citizen there.

Alena 46:12
Oh, no. So because it's in the European Union still, I mean, Dad leaving boss that's still in progress. Oh,

Unknown Speaker 46:19
I see.

Alena 46:21
So I'll get coverage, like my insolent and probably even test. Drive. Right. So I they are different requirements for pumps. And as

Unknown Speaker 46:35
much as I get it,

Scott Benner 46:39
I feel like I'm remembering back to an episode I did a while ago, for somebody who lives in the UK and that their stuff is free. If you're

Alena 46:48
well, yeah, that's free. But you have to comply within some requirements to get palm. So maybe you. So sometimes your agency has to be certain thing. Like, yeah, there are some requirements for it.

Scott Benner 47:04
Yeah, that's interesting. So you are interested in getting a pump?

Alena 47:08
Yeah. And then actually, even before I started listening to your podcast, from the Facebook quiz, I came across your insulin pump and I can't remember the name though. I thought, yeah. And I was like, excited. Like, there's a tubeless insulin pump on the market. I can't believe it. But it's not in Czech Republic yet. Because the thing with it's not like we are behind. But when these devices come from, like English speaking countries, they have to go through like check pan of FDA, and they need to comply with the rules. And they have to be translated. So that's, that's the main thing. It's not like, yes, it works for your face.

Scott Benner 47:56
One of the people I know it on the pod, probably. Gosh, it's got to be six or nine months ago. Now he moved from from America to the UK because they're doing more work there. So you should you guys should see that stuff coming around, I would think sooner than later they are working on on making things available more completely around the globe.

Alena 48:21
I mean, I hope one day I get a full time job that I'll be able to pay for it myself.

Scott Benner 48:28
How long till I mean, how much more University do you have left till you graduate?

Alena 48:32
Is it worth two months ahead?

Unknown Speaker 48:36
Just two months? Yeah, I've

Alena 48:38
got my dissertation deadline. Next month. No, this one, the one after that. So fingers crossed.

Scott Benner 48:45
What are you hoping to do? Are you hoping to work in a pharma company or?

Alena 48:48
Yeah, yeah, so I'm doing biopharmaceutical science degree. So I will. I have experience in law and I hope to be working in love in like quality control and chemistry and stuff like that.

Scott Benner 49:00
You gotta get a job with somebody who makes insulin, then it will be free through your job.

Alena 49:06
I don't think it will.

Scott Benner 49:08
Because here, that's how it works. If you work for a pharmaceutical company that makes the drug. When your doctor prescribes that drug, you just get it for free.

Alena 49:18
Okay, oh, have a look into that. I'm not interested in another biologic stuff. I may have a look into that but

Scott Benner 49:27
maybe maybe on the pod has something over there. You can work with them to get your pumps for free instead, that would be cool.

Alena 49:32
Well, I'm not you know, I'm not an engineer. I feel like it engineers who are looking into

Scott Benner 49:40
what got you interested, like, how did you make the decision that this is what you would study?

Alena 49:45
So I wanted to do pharmacy at first, because I was interested in biology and chemistry. I mean, I enjoy that. Yeah. For me, I don't enjoy it right now. And trust me. So that's why For fun, let's see, I know I didn't get the marks for it and my final. So the idea was to stop this and do either one term or just the full first year to get high marks and then transfer to pharmacy. I liked it.

Scott Benner 50:14
But you just found something you liked. That's really good. Yeah, it's

Alena 50:17
different. Yeah,

Scott Benner 50:18
that's excellent is an RNN text real quick. I was like, I'm going to ask you to turn her bazel off for a half hour. She's been more on the low side the last couple of days. I don't think she would mind me saying but she started getting your period a few months ago. And I'm still figuring out those days. Yeah, I'm still figuring I'm still figuring those out. Last night was one of the nights I was like, I think I could have taken her pump off for six hours, it felt like and she just she didn't seem to need insulin for a while. So we were we returning it way down and stuff like that. But it, it's going fine. It's just an adjustment, you know, it's not too bad.

Unknown Speaker 51:04
Well,

Scott Benner 51:04
how are you finding? How are you finding the change in your approach to diabetes? Is it working for you in a way that's comfortable? Or do you struggle with it sometimes? Are you still figuring No,

Alena 51:18
I'm arriving? I've talked about it a lot to people around me feel like they might be bothered. Um, but yeah, I'm kind of surprised by it. Because I was never like interested in diabetes, and I am now I am. And it's, like, unusual to me. But um, yeah, I'm happy with it. And I inject myself a lot. Like, I don't, I should actually call him one day, but I do a lot of smaller color corrections. And so I think I could do with the pump because of that. But, yeah, I feel like it's going really well. And I'm so glad to finish came in and didn't have any consequences for my decisions about about my diet, because that could have ended up badly as I was, I was really lucky. And I hope someone that is like, they like me. Yeah, it doesn't do anything to me at all. Dude. I'll be just one day in pain. I'll be bloated, but then I'll be fine. It's fallen.

Scott Benner 52:25
Yeah. No kidding. And so you really are just using, you're just being more aggressive with your insulin. Really?

Alena 52:33
Yeah, definitely. And then just caring about my sugar blood sugar levels. I'm way more

Scott Benner 52:40
right. And so you're reacting to elevated blood sugars get insulin from you much sooner than it ever did in the past?

Alena 52:47
Oh, yeah. Yeah, definitely.

Scott Benner 52:50
Oh, and this is just from having an experience getting a little scared going out and finding community and then seeing that there's another way to handle things and, and giving it a try.

Alena 53:02
Yeah, I don't think it's good. Like, I don't know, what was the 10 you probably

Scott Benner 53:07
saw I said you you could you're lucky you didn't like because I think that some point they said, like you could have had some really serious complications from what Yeah, so it didn't that's interesting. So you didn't get you weren't afraid. You were just like, I'm gonna do this differently now.

Alena 53:24
Actually, no, it wasn't like that. So in the hospital, because our that was the fact Okay, I'm not feeling well. And I feel weak, which is something that I never experienced before. So these are new things for me. And they were like, yeah, it's really serious and unneeded, I was close to needing and transfusion because of how low my error levels last. And so it was very serious. But to me it didn't feel fear it serious. I didn't feel like dying. So it and it's quite hard to process that so I think it started when I was looking for like some gluten free food or something that would be edible. Because my first experience gluten free diet wasn't wasn't really amazing. I mean, it's good now it's doable and and because of the hits the fans we are in and people going gluten free even though they help don't have to. There is a lot of options now and coming more and more so looking good.

Scott Benner 54:31
So So is the food is it something you get accustomed to the flavor or do you just not bother either doesn't take

Alena 54:41
and then my issue was bread because I found this really really tasting bread. That was a nice and in UK you can buy like so much sleep loaf of toast bread. And if you can't tell the difference. So what's bothering me now, the most is I have to prepare the meal mainly myself, I

Scott Benner 55:03
don't want to cook.

Alena 55:06
I never wanted to cook. And here I am.

Scott Benner 55:08
I do believe that that's I as watching my son, as he turns 18 preparing food seems to be one of the the horrors of his life if he ever has to do it. So I get you plus you're in school, right? It's not it's not real conducive to you making food on your own, I guess.

Alena 55:26
And this is in September, I lifted minutes from from uni. So my lunch break, I just go home and made something quick or hit me up because

Scott Benner 55:38
I gotcha. Yeah, no, I understand. All right. Well, I feel like I got to the bottom of most of what I was interested in, like I am super interested in in the, the transfer that happened to you. It's, it's but it's, I guess it's really interesting to hear you say that you're not 100% sure what happened, just it just happened. And you changed, because maybe it would help people to hear that it doesn't have to be a thing, or there doesn't have to be this understanding or this, you know, wow moment that you would see in a movie. It was just you just one day, you were like, I'm just gonna do this differently. And, and I think that's kind of as I was kind of struggling to understand it. Now. I'm looking back and I think maybe it's not important to understand maybe it's just happy to know that it can happen, you know,

Unknown Speaker 56:25
well, yes.

Scott Benner 56:26
Please, for you that it did happen, obviously. Oh, yeah. No kidding. I guess I have one last question. Cuz you said something that I just threw me off for a second. But you you actually have to get on the airplane to go get your diabetes supplies.

Alena 56:40
I mean, I get to come here as well.

Scott Benner 56:43
Okay. But you get them there for you get them Czech Republic for free?

Alena 56:47
Yeah, I mean, I don't know. I would, I would get them here for free as well. But, I mean, I just got used to it that way. It was. Yeah, it's not. It's not a big deal.

Scott Benner 56:59
And you'd go home once in a while you imagine to see your parents and things like that, right?

Alena 57:02
Yeah, yeah, yeah. But if I if I'm going to work here, and that will, I'll have to make some kind of transition. And I don't want to change my insulin, at least even even saying with injections. And I need to change that. So but I'm really busy. So that will have to come after me. Because they're gonna make you sit in the hospital to change your insulin. Well, I would have to fly home and be home and then out of that time planet in the hospital. Yes. A lot of planning. And I'm applying for jobs right now. And so they're like, yeah, you could start at the beginning of June and I'm like, okay, so I can't plan anything What if I get it all?

Scott Benner 57:44
I do think you're right though. And I don't know how obviously I don't know your schedule or in your life is different than mine is but I think you're 100% correct about looking for a faster acting insulin. I think that

Alena 57:57
goes you know, you and a lot of people who are using similar into like you do the fast acting ones are looking to the super fast acting well, like, Yes. Is he caught pronounced via fax? Oh,

Scott Benner 58:11
yeah. I think

Alena 58:12
Yeah. But I'm like, behind. So in this one group, someone was asking about who is using this insulin and in the comments, I was like, is anyone using mine? And there was a lady who said, I got taken off the insulin 1995 Yeah, I was born. Like, a need to make changes. This is

Scott Benner 58:35
we definitely want to get you off of that insulin that I think so. Yeah, let's go with that. Let's cuz I just googled like diabetes, UK insulin, and you can get Arden's insulin, they're a piece of pizza, you can get there, and novo rapid, which is you know, novalogic but, you know, under a slightly different name and human logs there. Yeah, it's there. Uh, you're, you'll, I think you should do it. I'm just I wanted, I would encourage you to do it. That's all.

Unknown Speaker 59:03
Yeah. Well, I'm

Alena 59:04
definitely it's funny that I think I got offered two changes in the land like, oh, years ago, five years ago. But I was not interested in diabetes. And also what I'm doing is working. If it's, if it's working, why fix it? If it's not broken? I was like, so I don't need it now. So maybe I had the chance to change an insulin and then I missed it.

Scott Benner 59:31
I got you by now. And now you look back and you think, oh, it wasn't working at all. I really wish I would have done that. That's, that's interesting.

Alena 59:38
I don't think so. I'm here right now with the experience I had. Um, so because I was lucky and I don't have any consequences, out of my decisions. I will do it again. Not like I'm going to repeat it. But I wouldn't take it back. Okay, because eating a normal diet, not gluten free was allowed me to move to England because maybe that would be would be putting me back like, not only have to take care of myself my diabetes, but I also have a special dietary requirements that will complicate everything more, or I couldn't go so I always do this work and holiday and that there was no gluten free food that was available to us as I can remember right now,

Scott Benner 1:00:33
you have an incredibly good attitude. I don't know if anybody's ever mentioned that to you before, but you really do like you see the high side of of everything. It's it's really nice like like you, you definitely you're definitely I don't know, I don't know what I guess I'm not as hopeful as you are. But you are incredibly hope like you're I love how hopeful you are, I guess is what I like I really do. Like because everything that happened to you like to see a silver lining in that one thing that you just said is really kind of magical. Like you were like, Look, had I adopted my gluten free lifestyle earlier than I wouldn't have done this and this wouldn't have happened and this wouldn't have happened. Like that's really, you are young, that is a joy in being young that I may have left me.

Alena 1:01:16
So thank you. So I think I apply it to rest of my life as well. So I'll go by I'm not regretting anything. And when it comes to you like relationships, and dating and stuff like that, because Okay, maybe I was foolish when I like that guy. And I don't know why No, but I am not ashamed of it. I don't regret it. It was an experience. And it made me who I am now. And

Scott Benner 1:01:48
yeah, it's just excellent. Elena really, that was really excellent. That's amazing. Your story is incredible. Like it really, I mean, from Czech Republic to go into the UK and your parents not you know, that your parents being like, Hey, here's these needles, good luck, kiddo. And, you know, like from and like, from everything in between. I'm really glad we talked it's Oh, I really appreciate you reaching out and, and wanting to do this and taking time out in what sounds like the the last two very busy months of your of your education. So

Alena 1:02:20
I actually didn't realize that. But when I was looking cold at you today, I was like, Okay, well, yeah, sometimes in April, that's fine by me. And then I have 10 days to finish my dissertation out. I mean, this one hour is fine. Don't worry about

Scott Benner 1:02:35
that. Thank you. What time is it? There? Were you right now?

Alena 1:02:38
Oh, so it's gonna be going to be 4pm now.

Scott Benner 1:02:43
Alright. See ya. You're, you're about 505 hours ahead of me then. Wow, I seriously, thank you. Is there anything we didn't cover that you wanted to get out?

Alena 1:02:55
No, not really. I just, I mean, I'm glad I with you. Because I don't have practically any diabetics around me even though you're not diabetic yourself. So it's so nice to share with someone who can relate.

Scott Benner 1:03:11
It's so true, right? Like you can't have like, Can you imagine trying to have a conversation even a little like this with anybody who didn't understand diabetes?

Alena 1:03:19
Yeah, now I have to repeat like, yeah, follow? You don't inject me within, like 10

Scott Benner 1:03:26
times. They're either they either be just bored out of their mind or confused or, you know, or whatever. It's, they would just pick out this is stupid. Like, I can't listen to this. And I don't understand you wouldn't? You wouldn't blame them honestly. Like, how can you understand something that that's so far into? You know, it really is? It really is interesting. Well, maybe? Listen, I have five downloads in the Czech Republic. This week. Maybe your mom and dad will listen.

Alena 1:03:53
My mom doesn't speak English. But, you know, they know I'm going to going to be speaking with you today. So

Scott Benner 1:04:00
okay, and so they they're not they're not good with English.

Alena 1:04:03
My mom doesn't speak my dad, though. So my dad will listen to this. And today.

Unknown Speaker 1:04:07
Wow, that's really interesting.

Alena 1:04:08
Well, but one more thing I wanted to mention. So I know you are like that people shouldn't be fixed on the cure for that, like, yeah, how to make the life better with. Yeah. So from my point of view, where I have different view of the pharmaceutical industry, and you are very right, and even though this is just my assumption, I'm pretty sure no one is looking for a cure for diabetes. Not only it's like incredibly complicated, it's like super hard, but also we are cash flow. And so yeah, they are trying to make our lives better with you know, CGM insulin parlons. artificial pancreas soon hopefully, but I don't think that They are not interested in cure, even though even though if they want to help us, because Tesla would stop.

Scott Benner 1:05:09
And I just said, you were such a hopeful person. And then you switch gears, I mean, went the other way, you know,

Unknown Speaker 1:05:14
like, we're, like the

Scott Benner 1:05:16
fans keeping us down to make our money. You're trying to get our paper, like you're about to break into like a rap song or something.

Alena 1:05:25
Just it's still a business, even though I feel well,

Scott Benner 1:05:32
let me try to make you feel a little better. I know, I know, for certain that there are people whose entire life is working on a cure for disease and diabetes being one of them. I don't when I say I don't live like I expected, I think it's just, it's a distance of time. That's, I think, maybe bigger than my lifespan. Like I don't know that it won't happen at some point. But I don't have a ton of hope that it's going to happen anytime soon. And if it does, it might be something that people just stumble upon more, more so because it's just so much I'm now having said like that a company like Dexcom is an example. You just said like they're working on glucose monitoring technology, that company is not trying to cure diabetes. And so right there, that's not even their shots. But I don't want you to feel like there's a conspiracy, because I don't I don't believe that there is I don't think that people are sitting somewhere in a room with the cure for type one diabetes. And

Alena 1:06:29
I don't think that's all. I think that the resources, the money they have for research, going into research of something like cancer, because cancer is super complex and fast and important to be treated. But diabetes with things we've got now like great insulin, and then I feel like there was a development in the treatment, but not cure.

Scott Benner 1:06:58
I understand. All right. Well, I am going to, I'm going to take the other side and say that I am very hopeful that people are looking for a cure. I'm just not incredibly hopeful that's going to happen tomorrow. And my point is, is that you can't sit back and not take good care of yourself thinking Oh, it doesn't matter, because they'll fix this soon anyway, and it won't matter. You need to treat your diabetes, like a cure is never coming. But I still I am hopeful about it, though. I'll be I will be hopeful for you to. You're very welcome. And will be helpful for me for all the other stuff. I really did enjoy talking to you. I really can't thank you enough for taking the time in this busy part of your life and talking. I really appreciate it.

Alena 1:07:43
Well, I enjoyed it too. I mean, I would do it even without the podcast.

Scott Benner 1:07:49
Thank you so much. I need more friends. So we'll talk.

Alena 1:07:53
I'm not for that, you know, like check up if I got a pump or not.

Scott Benner 1:07:57
Absolutely. Absolutely keep in touch. I would love to know how things are going.

Alena 1:08:01
Right. Okay, thank you very much.

Scott Benner 1:08:05
It really was Thank you Have a great day.

Alena 1:08:07
Okay, by

Scott Benner 1:08:09
the Juicebox Podcast is available everywhere all over the globe, but you get to listen to it in the comfort of your home. Thanks to Omni pod Dexcom and dancing for diabetes, go to dancing for diabetes.com my omnipod.com forward slash juice box, or dexcom.com forward slash juice box to find out more about the sponsors. Thank you very much for doing that. Thank you very much for all the great reviews that you guys left recently on iTunes. I much appreciate that. December is going to finish up strong. We're gonna be talking about exercise and insulin and how weight is gained because of insulin. How to avoid it with Chris Rutan. We're gonna be talking with Brett from Omni pod. And of course, Anthony Anderson from ABC blackish. We're going to finish up 2018 strong and jump right into 2019 even stronger. So you have not been listening to the podcast for very long have you?

Alena 1:09:09
Oh, not really. So I think I messaged you sometime in January. Um, and I've been pinched it everything from 50 always said no, he added the episodes and all of them on Spotify. Yes, I started with 50. And then, as you already mentioned, you kind of developed as we were recording it. were more confident and so I got used to you being more confident. So

Scott Benner 1:09:39
I went back and I was less confident.

Alena 1:09:42
Yeah, it sounds like weird. You're listening it to it like in the opposite order. Yeah,

Unknown Speaker 1:09:50
that's a thing. I

Scott Benner 1:09:50
never really considered that but that's very interesting. Yeah, I, you when you start something like this, you don't really know what you're doing and then feel your way through it. And then it's does get better so oh that's that is really cool.

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Scott Benner 11/27/18 Scott Benner 11/27/18

#196 Susan Worries

Mental health and type 1 diabetes….

Susan's family dealt with depression and anxiety before type 1 diabetes but after T1 it got worse. Today we talk about the emotion and mental stress that can accompany diabetes and how Susan is coping.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello, everyone, welcome to Episode 196 of the Juicebox Podcast. Today's episode is sponsored by dancing for diabetes Dexcom and Omni pod. There are links in your show notes or Juicebox podcast.com for all the sponsors, but you can always go to my omnipod.com forward slash juicebox dexcom.com forward slash choose box or dancing the number four diabetes.com to learn more. Today's episode is with Susan, Susan reached out and wanted to know if I had an episode about depression anxiety in the mental health aspect of type one diabetes. I didn't. So I asked her to come on to talk about it. In her initial outreach to me, she said that she had struggled with these things prior to the diagnosis of her daughter, but that they got amped up in her words, after diabetes. She said she was doing better now but had her moments and wanted to know if other people could share their insights so that she could learn. Turns out I didn't have an episode about that. So Susan came on very generously to talk about her life. For a topic that I wasn't sure I could find fun in we really did. And yet got out a lot of really interesting stuff. So sit back, relax. And remember that nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise. This is Susan.

Susan 1:30
My name is Susan. And my daughter, Jenna V is 16. And she's our T one D. I also have another daughter Michaela, who's 14 who is not T one. And yeah, we've been doing this for almost two years now.

Scott Benner 1:48
Okay, Jennifer, she was she was diagnosed when she was 14.

Unknown Speaker 1:51
Yes.

Scott Benner 1:52
So you, you reached out and you were like, hey, do you have any episodes about like anxiety, depression, like the mental health stuff that goes along with Type One Diabetes? And I was like, I don't but do you want to come on and talk about something I felt bad about? Susan, I'm sorry. But uh,

Susan 2:08
oh, no, no, no, I was like, God done it. Now.

Scott Benner 2:11
Trust me, You're not the first person to get sucked in like that. There have been other people like does, especially the poor and the peoples or anybody on the talks about MDI, like, there'll be you if you come. So. So I really appreciate you first having the question. And then secondly, reaching out and thirdly, being willing to be the guinea pig for this cup for this conversation. So So I guess, tell me a little bit about, you know, when when Genevieve was diagnosed with, you know, my guess Let me ask a question. First, would you say that you are you a family who lived in kind of an anxiety lifestyle to begin with? Or did this come with diabetes?

Susan 2:52
Yeah, well see? Yes. So I've struggled my whole life with regulating my mental health, I have issues with depression. And it's always been something that I've lived with like, and I didn't realize it until I was in my 20s that it was a problem. And I had kids in my 30s and, and now, I'm not 30 anymore. And so over the years, I've you know, done some work and I learn all kinds of coping skills and different things like that. But then, when I had done a vive, you know, she always was an anxious child. And she I mean, we're having conversations Well, what whatever you call a conversation with a four year old about the fact that she didn't want to dry when she was older. Because part scared her

Scott Benner 3:49
that's interesting. That's what she had for you like I don't know when this is exactly gonna happen in my life, but I can tell you right now I'm not getting involved. My life in this house and anywhere about 150 yards from here.

Susan 4:04
Exactly, exactly. You know, um, we were I think we were driving to preschool or something and I was joking with her like you what you want to get to sitting behind the wheel waiting for me I think I'm like, let's go to like, Oh,

Unknown Speaker 4:20
no, no way.

Scott Benner 4:21
You don't understand me or maybe a when you're just ignoring it, but I never Yeah, that's well, that is really something to see it go back. Ah, that is interesting. And did you recognize it for what it was then or back then? Do you just think like, Wow, my kids thinking about weird things?

Susan 4:36
Well, yes, and no, you know, it's like, okay, four year old things like this right now. Like, Oh, great. My kids things like this. Perfect.

Scott Benner 4:48
Which, the one I made.

Susan 4:50
Right, exactly, exactly. Yeah. And then her sister. He has always been kind of a lover to death, by the way, is some quirky Like I would cut her nails and she's like, those are mine. Put them back on. Like, you thank you for Yeah. You always

Scott Benner 5:08
know you're in for hearing something fun about someone's kids when they preface it by going, No, I like the kid. I just want to make sure you understand that first.

Susan 5:18
That mother's curse. I hope you have one that's just like you.

Scott Benner 5:23
Oh my god, I didn't tell you the fingernails thing. I don't mean to laugh so early on a serious subject. But that was fantastic. I that might have been like, I might have been like, Hey, honey, let's go to the mall. And maybe Mommy will forget you there. Go bother someone else with this fingernails situation.

Susan 5:43
factly. But you know, on the other hand, both of them went to the same preschool at different times. Of course, there's different ages. And I go to drop them off. And I'm hanging out in the first couple days. They don't mean to leave by like the third day is independent of each other. Right? They look at me and go, you can go now. like, Okay, see you later. As I'm running away, right? Yeah. Right.

Scott Benner 6:08
I'm like, wow, Is this true? Can I get out of here for real? No. Well, so yeah. So it comes and goes and it's wrapped around different things. Right.

Susan 6:16
Like, I got traffic. Yeah. And so Genevieve had started high school, we start High School, in our district in ninth grade. And, but a little, we live in a really big area. But we live in a very small school district and only had five schools, six schools for K through eight. And so she went to the next district over for high school. So she went from the Middle School of us, I'd say, at the time, 600 kids to a high school have almost 1600 Okay, and, and it's high school, and it's different, and the schedules didn't level up, right. And the whole year, she is just amped up means everything is making her nervous and everything is just to the nth degree. And I'm like, Oh, god, it's good thing. I only have two kids. Now. I know why boarding school isn't too bad. I'm married for 11 not money. No more guy. That's not enough. As he sits right here. Yeah, that's

Unknown Speaker 7:22
right.

Susan 7:24
It's an old joke. But, you know, what happened was that I'm looking back. I think she was sick.

Unknown Speaker 7:33
Do you think I'm sorry? What?

Susan 7:35
I think she was starting to get sick. Okay. Um,

Scott Benner 7:38
do you think the diabetes was on its way then?

Unknown Speaker 7:41
Yeah.

Scott Benner 7:42
How would you like to smile? And I mean, smile really big. All you have to do is go to dancing for diabetes.com. That's dancing the number for diabetes.com. Go get yourself a smile.

Susan 7:57
He started not working well, I would say probably February. But her demeanor really started to change at Christmas time. And it was just everything was doom and gloom. And she was the typical 14 year old drama child and this, you know, picking on our sister and I am just fine. I don't need you know.

Scott Benner 8:23
I am aware of what you're talking about.

Susan 8:25
Yeah. Do you have a 30 foot? rd? 13? Yes. Yeah, and

Scott Benner 8:30
I'm married. I have people in my life who I never say act like that. Because I'm afraid they'll kill me in my sleep. But yeah, so she you think it was her higher blood sugars may be coupled with anxiety? Or do you? Do you look back now and think maybe it was more about the high blood sugars or it's hard to know,

Susan 8:49
I think it's hard to know. But I wrote it off for so long as her just being 14 empathy in 14 and a girl in high school and blah, blah, blah, right? And she has always been on the 95th percentile of height and weight. So she's always been like an Amazon. And around Christmas time, she's like, I want to drop a few pounds. And um, you know, and I'm like, okay, more high school stuff. Let's just keep an eye on it. She's just wasn't doing anything crazy. And I needed to buy a swimsuit for her in California, or at least in our school district. They have the swim units, because we have a pool pool. Those guys both have pools, and I bought her swimsuit and she comes out to show me that it fits or not, and she's so proud of herself. That she's lost some weight. And I'm less than a month later we went to go shopping for some spring clothes. And she just seemed off all week. We were on break, but it was where we have April break. Every spring and we go to the put give her some clothes. She goes into the dressing room. She goes, Mom, I need a bigger size. And I'm thinking to myself, no, you don't, because you've been losing weight. And I go in there and I look at her, and the clothes are just falling off of her. And she's like, I need bigger size. I know how to you need a smaller stuff, right? And I'm realizing, oh my god, she's not just not feeling well, her cognitive ability is not there. Oh, wow.

Scott Benner 10:31
So you that there was a disconnect between, like bigger and smaller that she couldn't? Yeah. Okay. How, how much after that? Are we at the hospital being diagnosed? Because I'm dying to know what what was really one see when that happened? Or? Okay. Yeah, so she was really in trouble, huh?

Susan 10:50
Yeah, yeah, yeah. Well, and she doesn't mind me telling the story, although it is embarrassing. But you know, I'm a mother. That's my job. We can you tell that we use humor a lot to

Scott Benner 11:02
I think it's very valuable. So she's already with it. I'm alright with it. Let's go. Yeah.

Susan 11:07
So by this time, speaking, going back a little bit to the anxiety By this time, he was having what I call mental health days, at least once a month. Or she would wake up and just not be able to do the day. And she wasn't a student. So I'm like, okay, just stay home, have a mental health day, get your group together, you know, and go back to school the next day, and we'll just take it as it comes, right. So then, of course, we have this April break, and I can tell her cognitive ability is off. And then she just keeps going downhill from there. And she's sleeping a lot. She you know, she didn't even nap as a baby in here. She's coming home every day and taking naps. And her color is off. And just everything right. And that last week, she got diagnosed on April, that week before she she's kind of just doing her thing, but really off. And she tells me like by Thursday, and say or Thursday, Mom, I haven't gone to the bathroom. And I can't remember the last time I went number two. I know. And I'm like, okay, and thinking back to the whole shopping experience. I'm like, wow, what, I wonder how long it's been. But I start tracking her. And so by Friday, she hadn't gone. And so I start giving her stuff. It starts out really mild. And you know, I have some prune juice, and let's do this. And by Sundays, nothing had happened, but she had thrown up. And so I kept her home on Monday and I told my husband, I'm going to give her a fleet. Mmm. And that stuff's like rocket fuel. Right? And if that doesn't work, I'm scared. And I was already scared. Yeah,

Unknown Speaker 13:02
sure.

Susan 13:03
And of course, so my anxiety starts to kick in. Because I am like, you know what the heck is going on? Right? I gave her I gave her the enema. It doesn't even move her. And so I call him I said, Can you please come home? He commutes from like, literally over an hour away because of traffic. And he doesn't get home till the late afternoon. Yeah, she walks from your house. Exactly. Yeah, right. Exactly. Yeah. Um, and, um, so he gets home. And then like, we got to go to the clinic, the walk in clinic I didn't even know tried to get an appointment. And so we go to the walking clinic. And we're there longer there. And she's so lethargic. And she's the, the on call. Doctor was actually a pediatrician. And she looks at Genevieve. And she goes, You know, I don't know, what do you think? And I'm like, I don't know, I'm thinking maybe moto? I'm not sure, you know. And she is like, well, we're gonna run some tests and ran some tests and some numbers were off and she goes, we're gonna run some more tests. And she comes back and she's like, well, Genovese diabetic, I call What?

Scott Benner 14:18
What does that mean? What are we talking about? Emily is diabetic. I saw that on television. That doesn't make any sense. So you know, the answer's no, no diabetes in your family, nothing that made you think about it, as

Susan 14:32
well. Okay. That's the irony because type type two runs in my family. My grandmother was diabetic. My dad was diabetic, type two, my great grandmother.

Scott Benner 14:44
And so when the when the first when she first says diabetes, do you think like, do you attach it to like what your parents had?

Susan 14:51
And yeah, yeah, to a certain extent, but at the same time, no, because the presentation was so completely different. Yeah, you know, and the other irony is, is that I'm always, you know, trying to be a good mom, drink your water do this, do that, right. And when we were at that shopping trip, and earlier in April, to visit my mom, I needed a new water bottle. Got like 10? And she goes, No, I need a bigger one. And I'm like, you know, Genevieve is drinking a lot of water is a sign of diabetes, we should now come and keep an eye on that. And then I immediately forgot that Congress. Oh,

Scott Benner 15:28
wow. It's like that funny. And what was the distance between that and and being in that clinic?

Susan 15:33
to eight weeks? Oh,

Scott Benner 15:35
you know, listen, first of all, it takes a while to figure it out. There's no reason to think, you know, a lot of the things you mentioned, I remember the Arden, like the last bowel movement she had was in a diaper. And it was so dry that I like scan through the diaper and it broke by it was like it crushed. And I was like, well, that's weird. And you would think that I would have went well, that's weird, Call an ambulance. But you know, right. Because that really would have been the way to go. And then, you know, days and days later when we figured out that she has diabetes. And then you look back with hindsight, you think, wow, I was watching her die. Like she she was dying. And I was and I was busy going, uh, you want a fleet enema? It really does make you feel terrible. But in the end, there's no way to really know, you know, it's not it's just it's in the end it become It's lucky that you figured it out, you got her somewhere and it got caught. And then she didn't end up being a, you know, a sad statistic of being, you know, a being diagnosed too late. Well, so tell me this, then that's a pretty incredible story. When the diabetes gets there, and everything's, you know, you're you're back home? And is it when when does the mental health stuff presented itself? Is it immediately? And how does it affect things?

Susan 16:54
Right? Well, for me, I just went into, you know, standard operating procedure mode, right? We do this and we do that. And I'm, we're part of, we were a blessing and a curse. We are part of the Lucile Packard Stanford hospital system. And so we get really great care. But it's a teaching hospital. Really smart people who, and I, you know, I feel kind of bad saying this, because, of course, I kept my daughter alive. But I'm not on the qulified

Scott Benner 17:34
we're just getting in the world of, of medicine, and they're seeing maybe sometimes you're seeing things for the first time or still figuring it out.

Susan 17:42
Well, it's just all very clinical, you know. So, as far as you know, textbook eat, right. So, they, they're very knowledgeable. By the time they actually see patients on a regular basis. They're full fledged doctors, this is their practice. Right? But, um, everything's always like, Huh, that's interesting. You know,

Scott Benner 18:05
you don't really finale to it and the fields are there. Yeah,

Susan 18:09
yes. Yes. Exactly. Exactly. And so I'm, you know, I'm, I'm trying to navigate this world, I'm trying to navigate this world on no sleep. You know, um, and so it's just on top of all of this, they're telling me, Oh, no, she needs to do manage it all by herself, because almost an adult, and I'm thinking, you know,

Scott Benner 18:36
it 14 how you're almost an adult? Yeah,

Susan 18:38
I like two weeks ago, I thought she was an idiot.

Scott Benner 18:43
The kid doesn't know the difference between bigger and smaller.

Susan 18:48
And you're asking her to dose herself. Are you on crap? Yeah, no,

Unknown Speaker 18:53
not here. Oh, yeah. Oh, yeah.

Susan 18:54
That's right. You've got four PhDs got it. So yeah. And so we this whole time, this whole years has been me an internal mental struggle about how much to manage, and how much to let go, which has just been I was just telling my husband last night, it has just throw me to the wall. You know, and you add to the sleeplessness on top of it. Even with a we have a dexcom. And, like the other night, I was up to one o'clock because I was watching a trend and I'm like, it don't like this trend too much. And it started to even out and I'm like, Okay, I think I'm safe. I go to bed. I literally fall asleep when the alarm goes off. But I'm so tired. I didn't even hear the alarm. He didn't hear the alarm. Genevieve didn't hear the alarm. And she wakes up and she's she's a mom, I'm only in the 50s and I'm like, Okay, what do you do? Because I had a juice and so kidney went back to sleep. But it took me a while to do that.

Scott Benner 19:55
And she did she struggle a little bit to like with her dexterity and to actually Take it and thinker get her wake herself up to do it all that

Susan 20:03
Yeah, yeah, yeah, she's in bed going, I really should get up but I really don't want to this woman

Scott Benner 20:11
the low blood sugar death spiral, I'll just sit here and die. And so I tell you I've, I've said it on here before I've washed out and sit in my living room inside. I'm like, Hey, you got to get up and get something she's like, I'm just gonna sit here and die. And I think partly she's joking. And I think partly she's in that. Yeah, where her brains like going, it's gonna be alright, like, go to the light, you know? And so I hear you. Well, listen, first of all, you know, sitting up and watching, like something you think is going to happen? I think we all have done that, that that's certainly true. Can you tell me like a little nuts and bolts? What were you looking at as a number? And like around that one o'clock time? Where did it go? Where you're like, Oh, this is gonna be okay, and I went to sleep. You guys, you guys are great. In the last 30 days, more Juicebox Podcast listeners have gone to try a free no obligation demo of the Omni pod tubeless insulin pump than almost any other time. In the four years I've been doing this podcast, there was only one month with more link clicks. And that month I was on my ads were great that month, you didn't even have a chance. But seriously, if you haven't tried the Omni pod yet, did you know that they have a free, no obligation demonstration, they'll send you a pod in the mail. And you can actually wear it and see what you think there's no obligation, as I just said, you know what that means you're not obligated to do anything. And it is 100%. Free. And free is the best amount of money you can owe somebody. I mean, if you owed somebody 10 cents, that's not even as good as free. I mean, for 10 cents, you'd have to like get an envelope, write a check, put a stamp on it probably cost you $1 50 to send somebody 10 cents, but free, you don't even have to send, they don't ask you over at the Omni pod to put like nothing in an envelope and send it to them. There's nothing for you to do, except try on the pod and say to yourself, hey, that's Scott guy at the podcast. He's making sense, this thing is amazing. I'm gonna keep going, I'm gonna keep doing, I want to wear a tubeless insulin pump. I want to set temp basals I want to do extended boluses. I want to live free of tubing free of needles. This is what I want. And how do I get that I go to my omnipod.com forward slash juice box. Or I click on the links in the show notes on your podcast player right now. Or at Juicebox podcast.com. You know you want to.

Susan 22:44
So it had started out around 120. And it was a dot dot dot down to around 90, e and then played with 92 and 93 for like five or six dots. And like I said by within It's one o'clock and I've convinced myself this is fine. It's gonna hold up. Yeah, it's gonna hold up. Not really, in some of it might be me being tired. And some of it might be me just wishful thinking. Not really. Yeah, I'm

Scott Benner 23:13
going to sleep now. Right? No, no.

Susan 23:17
You know, if I had looked at the previous thoughts, which I knew about, but I was just so focused on those three or four or five, that, you know, she was like 300, you know, a couple hours earlier.

Scott Benner 23:27
Okay. So you're in that spot, really where when we talk about that a lot like highs end up causing lows, because yeah, you get the 300 because you've missed time, some insulin at some point, probably for your dinner. And then eventually you look at that 300 long enough and you go, okay, more insulin. But then now the insulins in and it's mis timed off the back end of the carbs, the carbs disappear, then the insulin is leftover. You have a big blood sugar, so it takes time for it to come down. But then when it gets in that like not that freefall but that drift. Yeah, yeah. There's no way to stop that drift ever like it? You probably it's interesting, but at isn't it when you stop and think about it? If 1130 ish, you would have just shut her bazel off for probably an hour that night that that 93 probably would have held up? Yep, Yeah, yep. And so have you seen that in the past?

Susan 24:20
Yes. And, you know, and we go and we go in spurts about it. Because the more I hands off I am, the more this tends to happen. And the irony is, is that I started listening to Juicebox Podcast, I'd say September, like right after school started for us. I was

Scott Benner 24:41
at the end of 2017. You started listening.

Susan 24:43
Yeah, yeah, yeah. So yeah, this last school year. And so I would say hey, listen to this guy. And you know, and she's like, Oh, that's interesting, and she loved hearing stories. So I'd pick her up and to love hearing stories about Arden and in you and you know where caller I listened to that day, sometimes it was two or three because I tend to bid stuff.

Scott Benner 25:04
Sure in case you're stuck in your car. So it's perfect. Yeah,

Susan 25:07
exactly.

Scott Benner 25:08
I never understood really why I have way more downloads in California till I stopped and thought about the like, because every state in the country listens to this podcast, which is really cool. And countries around the world, I've almost an all of them. But man, California is disproportionately bigger for downloads, and I realized that people are just trapped in your cars.

Susan 25:28
We are. I don't know why I pay a mortgage, you know? Yeah. Our shower at the house and live in the car. Um, so, you know, so we've talked a lot about friends and we talk a lot about, you know, let's try to head things off and she's gotten when she thinks about it, when she's actively managing. She's really good. You have to keep her a one c between, I'd say it's six, six and seven. That's great. Um, which I mean, what's a mommy look like better, but she's doing it on her own as a six year old. I think that's amazing. That's really good. You know, because I really don't I, like I don't even know I have every time I touch that PDF, because we also have an on the pod. I had to stop and think how does this damn thing work?

Scott Benner 26:12
Oh, that's great. So she really does have a hold of it then. And yeah, listen to get the 300 I mean, it's not it doesn't sound like it's all the time obviously with that. Yeah. So she's doing great, but, but it's but it is it becomes a bigger thought like the rest of like, how to get this 300 down as quick as I can without it being a low leader, and especially bumping up on, you know, going to bed and let's you know,

Susan 26:38
well, and this is the this is the thing and where this whole? Like, is she not? She depressed? Is she anxious? Is she not paying attention? Is she? Um, she like, Oh, well, you know, this is my life now. You know? And are is it just her being 16? and not wanting to

Scott Benner 27:00
know, all that a little bit mixed together? And how to figure that out? Right?

Susan 27:06
And I and I manage? I'm the one who manages the night stuff. If it comes up? If I wake up? I'm

Unknown Speaker 27:16
like that.

Susan 27:17
Yeah, right. Exactly. And, um, because remember, my husband is live with us. He lives in the car. And you know, so it's like, Okay, this isn't you having a low and feeling like, crap the next day. It's me, too. You know, and so then I think about my getting everyone keeps playing. Because we're in the college season, you have an older one too. So you know what the whole, you know, LSAT, and where are you going to college nephew's visit in? Blah, blah, blah? And here's me I start spiraling going? Um, yeah, how's that gonna work? You know, because I'm not going to be there if she goes away to school, but I don't want to I don't want diabetes to define our life. Okay. You know, for sure. So, well, let's see what I mean. And on and on. I do.

Scott Benner 28:06
Okay, so we'll take a break here for a second, while Indy drinks water. What are you doing? I left the water on the floor and the dog never cried. Just let it happen. We'll put the ad in here. Do you know that since dancing for diabetes has been advertising on this podcast, they've begun to get donations from all over the globe. I can't thank you enough. And they can't either. But they would like to try by showing you pictures and videos of adorable children dancing. It's hit dancing for diabetes.com it's dancing the number for diabetes.com. They also have a great Instagram and Facebook page. You should go check it out. Thank you so much for supporting them. I want to go back to sort of what what I was I'm hearing a little bit about the the anxiety and stuff. So what what so far what I've heard from you is kind of goes back to an episode from a couple weeks ago, like you worry about things before they're real. Right? Right. And, and that but but the difference between someone doing that consciously, and someone having anxiety or you know, depression, it's a different road. And so, you know, so if it's just someone being dramatic and panicking, you can say to them, like worries, a waste of imagination, you know, and that's a, that's a reasonable thing to tell somebody, like snap out of it, stop doing that. Right?

Unknown Speaker 29:34
Right.

Scott Benner 29:35
But if you're a person who lives with anxiety, that's just me saying something to you, it's not valuable anyway. And so that is more what I was hoping to talk about today, which is Yeah, when you actually have a, you know, a clinical diagnosis or you are a person who know you live with this anxiety, how does how do you negotiate these things and have you found a way through yet

Susan 29:58
um, you know, when I'm taking good care of myself, I know, I do all the things that everybody's supposed to do, eat right, get enough sleep. For me, meditating really helps us having that, you know, even if it's literally 30 seconds of clear your mind, because, you know, stop it, literally stop it. I'm trying to live in the moment, it's, you know, all those platitudes, they're there for a reason. And so when I really try to do that, and just really just take a breath, and, you know, I have two amazing daughters who are just phenomenally hilarious. And who do, you know, who are good people, you know, and I have a husband who puts up with me, and all my craziness. And I have, you know, I have my own business. And, you know, I own a house, you know, I just go through all these things, to be thankful for

Scott Benner 30:58
him to stop yourself, and you just remind yourself that things aren't nearly as bad as they feel. Is that right? And a lot of good that you you're not recognizing always?

Susan 31:08
Exactly. Because my mind once it's like, it's a program, you know, like, some people are programmed to be, I don't know, authors, or, you know, racecar drivers, or whatever my mind is programmed to think of worst case scenarios. You know,

Scott Benner 31:25
I hear you What if our jet plane crashes into a volcano, we don't own a jet plane. But what if we get one and write that kind of stuff? And I'll tell you, if you've listened to these podcasts going back over these hundred and however many episodes, I have spoken to people, sometimes you can tell while they're talking that their anxiety is in control that they don't have the ability to stop it. And and the answer isn't, we'll be less anxious. The answer is, how do I cope with who I am in this situation? Right, right. And that's really what I think you were reaching out and asking like you what you were wanted was I, I need to click on one of these downloads, where someone tells me they're really anxious, and this is how they handle it, not how they not how they fixed it. Is that right?

Susan 32:08
Right. Right. And, you know, yes, because get online and you see, you know, there's things like Facebook, or even the podcasts are a double edged sword, right? Because you can identify, I think you've even talked about this before, to you know, people like, Oh, my God, I'm up into the middle of the night, you know, I look at my number, it's 40 going straight down. And that's great in the moment, because like, Okay, I'm not the only one in the whole universe who's dealing with this, right. But there's never there's very rarely the next step.

Scott Benner 32:42
Yeah. There's no value past that.

Susan 32:44
Yes, yes. And that's what I was kind of looking for. I mean, there's a, because we're such a weak subset. I mean, how many people have T one D, right? And how many parents are dealing with this? And here's Okay. And then this is where my mind is not healthy. I actually have a dear friend, I met her when our oldest. So for babies, it's like a new moms group. And her daughter was diagnosed, she was less than two.

Scott Benner 33:15
So if you've known a person whose child has had type one,

Susan 33:19
type one, right? Yeah.

Scott Benner 33:20
Did you ever go to her for help or anything?

Susan 33:23
Oh, we're in the hospital, you know, and I email her literally in the middle of the night. And here we are, and this is what's happening. But don't worry, don't you don't need to come over and you because I'm worried about her and her lack of sleep. Now, I worry about my crap and her crap, too.

Scott Benner 33:43
You know, it's really interesting, really, because there is a moment there where most people would be like, Listen, if there's anything you can offer me in the way of advice? Yeah, I'd like to hear it. And you were like, No, you must be tired from your kid having diabetes. You have anxiety enough for her and for you.

Susan 34:02
And we actually just met last week for coffee. And it's so funny, because we've always been good friends. But I walk into the establishment. And there's literally like, 10 of us who've stayed friends since this class and sit down abuse. Ah, yeah. But not all of us get together all the time. So most of them were ordering coffee, and she cooked. And I just complained for a minute and then like, go for it. Please.

Scott Benner 34:29
I listened to a podcast I wish they would curse on but they don't.

Susan 34:34
You know, I wasn't that you were like, gonna take a while to edit. Because, you know,

Scott Benner 34:39
we did curse a couple of times. Yeah, yeah, there's part of me that thinks I want it to be good for kids to listen to, which is and I know that I say sometimes that I curse, like almost consistently through my life. Like I am genuinely amazed when I talk to somebody for an hour and this podcast and I didn't curse I sometimes I finished. I'm like, Wow, what an accomplishment. But I wish there was a way in iTunes to just make one of them explicit. So I could have somebody on it, we could just have like a, like a planning session like that. But then you'd have to make the whole show explicit, or the whole show clean. So I can't do that. But you guys got together for coffee. And you did that?

Susan 35:18
Oh, yeah. Yeah. And it was, you know, and it was just a whole new bonding experience. And like, a month before that I had actually emailed her and go, Okay, I know, I'm crazy. You know, I'm crazy. I would I feel bad contacting you, when I have a question. Because you are not the, you know, authority, just because you've been doing it longer. And she just email back like, yeah, you are crazy. You can always ask me about anything, you know. And so, you know, yeah. When I when I emailed you and said, hey, that's really I you know, because I feel like I'm learning so much from the podcast and from your other listeners, you know, when they when you have conversations with them, I'm like, you know, there's maybe I am doing much better than I think because my anxiety is telling me I'm crazy. I'm

Scott Benner 36:11
what is interesting, isn't it that your daughter's 16 managing her blood sugar mostly on her own? And her Awan see you said was really is I thought very good. And so what is it you're worried about? Like and you but you did. You mentioned it earlier? Let me let me stop myself. I shouldn't have even asked the question, right now worried about college, which is like, probably two and a half years from now.

Susan 36:34
All right. Well, it's a year from now a year

Scott Benner 36:37
and a half year and a half a year. But see, you just did it there. What really is the difference between a year and a half from now in two and a half years. Now? The point is, it's a long time from now.

Susan 36:47
Not tomorrow night.

Scott Benner 36:50
And that's so much can happen between now and then that and now I'm going to be cliched. And I'm going to go back to the title one of those old episodes. By the time somebody hears this one. Worry is a waste of imagination, because you're worried about something a year and a half from now, that might work itself out in that year, if you can be thinking about something actually important right now. Right? What?

Susan 37:12
I still haven't done

Scott Benner 37:14
what I was just gonna say if you weren't riddled with anxiety, what should you be thinking about right now?

Susan 37:21
I should probably be thinking about like, do I have food for dinner tonight? Do you know? I'm finishing my taxes, which are like 90% done, but I can't seem to get them done. I'm going to the gym. Right?

Scott Benner 37:34
So my bigger question is, is ignoring those things also causing you anxiety?

Susan 37:39
Sure, because that's how being an adult

Scott Benner 37:41
you are in a cycle of insanity. By the way, we might call this episode cycle of insanity, but probably not. But but but but so. But there's a there's a that to me. When you said you have somebody to talk to about this. I said no. When I said to have you on you had to realize that at some point we were going to get into like trying to figure out how could you do better. And so that's my first thought as a unlicensed unqualified therapist through a podcast, which is literally as meaningless as talking to a wall but

Susan 38:16
no advice whatsoever, because that's not we

Scott Benner 38:18
don't give advice here on the Juicebox Podcast. That's right and but here's what it sounds like to me is that by by worrying about the future, you stop yourself from considering the present, which then also causes you more anxiety which totally makes it impossible for you to find that quiet place where you can remember that things are going better than you think that you have a lot of good stuff in your life and that you're it's not all doom and gloom and and so then I think in my mind your your answer should be that you really have to force yourself to only thinking about today and tomorrow. Like do it do that for a little while until you get yourself out of that cycle and then because if you get rid of this today, anxiety about the taxes in the gym and all that stuff you should be doing what's for dinner, then maybe you will be more focused on the blood sugar's not have a 300 gets you up to one o'clock in the morning that has a blood sugar of 50 overnight, which then makes you worry the next day about the next day. You have to somewhere you have to start clean. Yeah, you know, you have to just push everything off your desk and go I don't care what any of this is I'm throwing it out. And we're gonna start over again. Because if not, you can't it's too life is too bang bang it happens too quickly. You you'll never lose the triggers from today that trigger tonight the trigger tonight the trigger tomorrow that caused bad blood sugars that cause anxiety that cause you not to buy gym bla bla bla bla bla how do you do that?

Unknown Speaker 39:51
Right now? Not

Scott Benner 39:52
right you got to tell me if you find yourself wondering what is my blood Sure, we're thinking, I hope my daughter's blood sugar is not going up today. I hope it's not going down. I hope it's staying steady. I hope. I hope I hope I hope I wonder I wonder if you find yourself hoping and wondering. You don't need to do that. Because Dexcom can take out the wonder and add in wonder. See how wonder can be used two different ways in the English language? What a messed up language Hmm. Like you wonder about something like you think about it and decide I can't decide if this is true or not because I don't have enough information that's wondering. But then wonder like all bright eyed and like, Oh my god, this is amazing. same word spelled the same way. What a messed up language, maybe halfway through the ad. Sorry, next time. If you want to know what someone's blood sugar's doing or what your blood sugar's doing which direction it's moving in how fast it's going. The dexcom g six continuous glucose monitor is right for you. Not only is it FDA approved to make treatment decisions that's give yourself insulin without a finger stick. But it shows you what your blood sugar is, and how fast it's moving. Or if it's moving at all. Imagine to know that your blood sugar's 90 and steady. Instead of having it be 90 when you check it with a finger stick and then wonder I don't know is it about the Fall is about to go up? I'll never know because I only know what I'm testing. But not with Dexcom. Next time is continuous. That's the see in the CGM. You know what else it does? It shares loved ones blood sugars with anyone you want. So for instance, I know what Arden's blood sugar is right now while she's at school, and you could to go to dexcom.com, forward slash juicebox, with the links in the show notes at Juicebox podcast.com. And get started today. Don't wonder anymore. be full of wonder.

Unknown Speaker 41:47
Oh, yes, right.

Scott Benner 41:48
Scott, how do I do that? No, no, no. So after going through it like that, and thinking about it in a real kind of nuts and bolts way, like what do you think your first step should be?

Susan 41:59
Well, you know, you're absolutely right, I do need to literally like wainfleet and just start fresh in.

Unknown Speaker 42:09
I think I need this sometimes.

Susan 42:11
Why yes. And sometimes I'm really good about that. You know, I physically say stop it. And I and I think what has happened is that I've gotten to this bad cycle in the last few years. And it's almost as if diabetes has triggered me again, somehow because I used to not, I was I go in cycles about how bad this is. But it's gotten, I literally had a friend told me one day you are out of control, you are literally spinning out of control. And I was able to stop it for a little while. And I found it amping up again,

Scott Benner 42:41
and have to understand that it's going to ramp up. Because like I said, this isn't just you having a this is not just an academic conversation you do you are a person with anxiety so so maybe you have to just realize that when it's when you see it ramp up, you have to start over and clean slate and I'll tell you it's funny as we're talking. It just occurred to me that I say to my wife all the time or on the podcast, like there are times when when you get on that like roller coaster with your blood sugar's The only answer is to stop, like stop eating, you know, no more carbs until we can get back to a steady place and start over again. Because like some roller coasters, you can't stop. You can't, you can only get off them. And so you know, it's not like you. I think this is very similar in that like, maybe you can write maybe you don't I mean, maybe you can't stop it from ever happening. But maybe you need to recognize sooner. Okay. This is this is a start over need, like right here. Like I have to start over right now. And even if that's every day, do you know what I mean? Like me, even if I do you know what I mean?

Susan 43:47
Yeah, maybe they'll put people meditate in the morning.

Scott Benner 43:50
I don't have anxiety. That's I mean, as we're talking about it, oh my god, I'm so grateful. And I don't mean to joke. I don't feel that way. You know, because it is. It does feel insurmountable as you're talking about it, but at the same time, you can't let it be that you're gonna have to find a way to knock it back. I

Unknown Speaker 44:10
start over again.

Susan 44:12
Right. Well, and it doesn't do anybody any good is that I know intellectually, I know that all the preparing in the world is not going to the zombies are still gonna come. Right. You know,

Scott Benner 44:22
it is the saddest part of listening to you talking. I don't you're not bumming me out. Like it's that the it's not controllable. Like that. It's not it's not just Oh, like you said academically or understand this. So it should happen. And right. It really is. I mean, there's a ton of stuff in life like that. Like I'm pretty sure I understand. I shouldn't have had an Oreo last night but I totally right. Yeah. And say it. Hmm. And you know, is it

Susan 44:50
Well, no, it is it is because, you know, in the past, I've been on meds the past and they have been helpful, but those even then they don't know make things go away. They just make things more manageable. At the end of the day, I have to learn coping skills to manage I can't only wait for beds to make them go away is for you to be so doped up your

Scott Benner 45:13
zombie. Yeah, right. That's not.

Susan 45:15
That's that's not living either. Right. Right. Yeah. You know, being a mother, you know?

Scott Benner 45:20
Yeah. Well, and then I guess the more important part is, is that you only have a year and a half left to here, watch online, I'll add to your anxiety you. Sorry, Susan, you have a year and a half left to set a good example, for your daughter before she leaves for school. Right. And that might be the most important part of this, maybe you won't ever be okay. But you really do need to do everything you can do to send her out in the world with these tools. Because the one she gets there without them. I mean, that's, that's the thing you should really be worried about. Right? Is is staying on this path, and then her leaving on this path. So if you need a way to shock yourself back into, like, you know, reality over and over again, maybe that's the focus you use. It's like, I need to do this for her. You know, for me,

Susan 46:12
yeah. Oh, wow. Hold. I'm having a moment. Hold on a second. Sorry. No, that's okay.

Scott Benner 46:18
Perfect, so people can hear you. I'm just kidding.

Susan 46:23
Me, My nose is that big.

Scott Benner 46:26
If you want to make any grand pronouncements about the podcast right now, remind people to subscribe at the end of it while you're sniffling? Sure.

Susan 46:34
Well, you know, the whole thing started with talking to Genevieve about blood sugars and maybe trying to get them under control. But you hadn't had a podcast? You said multiple times that it was the first time I had heard it, about how you talk about, um, you want artists to be her authentic, best self. Yeah. Right. And so I was telling Genevieve about that. And we started talking about, you know, when she's high fees, really anxious. And she's low, he gets into these deep, dark depression. And she actually really that first year, she really struggled with depression. And she's still not, at least not to me, she doesn't articulate why or where she was with that. But you know, we both know that when she keeps her blood sugar, we spend like, like 90 and 120. That is, that's my girl.

Unknown Speaker 47:29
Yeah, right.

Susan 47:30
And anything outside those numbers, she starts being a crazy teenager, as opposed to chubby

Scott Benner 47:38
guy just it ramps everything up in one way or the other just throws your throws off that. I mean, listen, it's not it's not that hard to understand, right, your brain a certain level of, of sugar to work properly. And when you give it too much or too little, you get weird effects, like the ones you described. And, you know, yeah, and then and then the anxiety comes. And then the anxiety makes the managing the diabetes harder, which keeps you with the blood sugars. And that's why these tools for the blood sugars are probably I'm hoping valuable, too, which is really yeah, like nuts and bolts ways to, like, just kind of stay ahead of things. So you don't have to sometimes think too much about it. You just have to remember, you know, a mantra saying I just need to be bold here. Or it's I'd rather deal with a low than a high like that kind of like stuff that we talked about in the podcast that I hope makes day to day stuff. You know, it's always my goal that you don't think about it as much that it's just like, Oh, this is the situation this thing applies here. And

Susan 48:39
Exactly, exactly. And so, you know, I think what I've done talking to you and kind of talking about myself, that was bad.

Scott Benner 48:51
And I'm like, she'll talk herself right through it. And it'll be fine. Good.

Susan 48:54
Yeah. And then you'll put me up for your amusement.

Scott Benner 48:58
for other people to learn, like you learn

Susan 49:00
other people's amusement Got it? Okay. I'm fine with it. Um, but I have started, I've just kind of transferred some of my anxiety into her numbers. Like I can't control them. Right? my anxieties around things I can't control right. And so I just need to be me. I can't I've not heard numbers. I'm not, you know, or anyone see is not a great on me. You know, we're two separate people. Yeah, I

Scott Benner 49:29
think that one of the biggest things I did for myself and in conjunction then we did for Arden was and I was able to do it more. It's just like a cognitive decision where that might not be the same for you. But I was able to say that to myself, like, okay, when something goes and that's why you hear me talk about on the podcast like this. Now when something goes wrong, it can't be wrong. Like I can't think of it as a mistake, right or a mess up. It has to just be ra that happened. Here's what I learned from it. I'll use that. Later, so something like this doesn't happen again. And and leave it behind. And I don't know if that's just me luckily being able to do that with my personality, but I didn't do it at first, I can tell that I can tell you that in the beginning, these things all piled on top of me like wet blankets, and you know, worse and worse and worse. And, and I don't know, just one day, I realized, if I don't do this, I'm gonna make myself crazy, and I'm gonna kill her, you know, so I have, I have to do this. And there are plenty of things in life, whether you have anxiety, or depression or your your you don't, or you have any other number of things going on, there are plenty of moments in life as an adult, and sometimes as a child, that you have to throw the gauntlet down for yourself and say, if I don't do this, I'm not going to file follow a path with my life, that it's going to be valuable as far as I can tell. And sometimes some people do it and some people don't. You know, so I think in the end, if that's your, that's it, it's like, you have to decide, like, Am I going to whatever my demons are, am I going to push past them?

Susan 51:01
Right. Right. And if you know, I, you know, one of my I actually don't worry about Lowe's anymore. And I attribute that to the podcast. So, um, well, what's

Scott Benner 51:18
low that you don't worry about

Susan 51:20
what 5050 used to? Like? I was like, literally hyperventilating. Um, because 50 is really close to 40 and 40. It's really close to the number of the word low, which is, you know, then what the hell are you? You know, and so that helps a lot. And oh, and I'm just, we're just a couple pieces of candy or a juice box do normal. Right? And yes,

Scott Benner 51:48
and I agree, listen, obviously, I agree with you. 100%. But of course, situationally 50 falling really fast is you might want to panic then, but not not, you know, not panic like that. But do something more specifically. But if you drift down and hit a 50, you're like, Okay, here's some stuff. And this will come back up again, that that's, I think that's healthy, and it needs to be listened. Jeff's yesterday and Arden's endo appointment, she pulls all this data up in front of me. And she goes, I see a 62 here I don't like and I said the I didn't like it either. I said that she goes, what happened. I said she has diabetes, we use manmade insulin, right. That's what happened. And so, you know, she looked at me and I look back at her and I'm like, Look, I gotta be honest with you. I don't want my daughter's blood sugar to go under 70 if I can help it, I said, but I'm not gonna get upset if it's 60. And I'm also not going to get upset if it's 60 for a little while. 1520 minutes. I'm not worried about that. I said, You know, I don't want it to go below there. And when it gets to 50 I, you know, I would definitely everything ramps up a little bit. But I'm not running around with my my hair on fire. I also tried to avoid it at all costs, like you should understand the other side of it. But you can't point to a 62 in this graph and tell me what happened here. Because if you don't know what happened here, you shouldn't be in the room with me.

Susan 53:11
I know. Yes, exactly. Who's the one with the five degrees?

Scott Benner 53:16
Yeah, by the way, and she understood and if it was gone like that, you know, and she said, maybe attempt bazel there would have helped I said, I think it definitely would have you're 100% right. And I'll think about it next time. I appreciate it. And that was

Susan 53:30
sort of the that was the end of that. Yeah. Yeah, I've had to turn off the highlighter. Um, because this goes back to letting Genevieve manage her diabetes. Okay. And me trying to step back and actually trying to alleviate some of the anxiety because Genevieve has always had a habit of managing it really well during the day she comes home after school and it's like she forgets that she has diabetes. And so then I was I felt it was just one more thing for me to harp on. You pick up your socks, your homework, check your blood sugar, you know, why did you do that? Bolus, Bolus, Bolus Bolus woman fall asleep?

Scott Benner 54:12
I'm gonna stop you for a second. Yeah. You said she gets good grades.

Unknown Speaker 54:17
Mm hmm.

Scott Benner 54:18
Stop bugging her about her homework then. let that go. Yeah, yeah. Right. And and so what if there's some socks on the floor? What's that go to? Like, give yourself a break from that stuff? Like, like, you know what I mean? Like, find ways to find ways to like give yourself permission to not worry about things that in the end aren't going to matter. No matter Yeah. I mean, listen, I like a clean house. My house is clean right now. But it also looks lived in there's pots on the countertop. There's, you know, there's a basket full of half, you know, finished clothes on next to my bag like we live in this house. Yeah, you know, there are no people taking care of us. So there's always going to be that level of that and I and with us I'll tell you to the decision I made with my son as he was going off towards college, which he's now you know, just a couple months away from leaving. I kept thinking like, Alright, like, he's not great at this, but he's gonna be gone soon. So I need to put more of this on him. And let him see what happens when it doesn't work out. It's not like it's gonna get fixed right away. But at least he won't find out all these things in a wash on his first week of college.

Susan 55:23
Exactly. Right. Yeah.

Scott Benner 55:25
Yeah. So it is really as much as it's been your job to be like, Jen, have you homework, homework, homework homework for all these years, it's now your job to stop saying it. Like, it's now your job to tell her Hey, look, I think you're a great kid. I love how your grades are. I'm not going to be up your butt as much about homework. But I need you to know that I am going to check back in on it once in a while. And I have an expectation that you're going to continue on the path you're on right now. Don't Don't lie, don't you know? Do yourself the favor of continuing like this, and I'm gonna do you the favor of not watching anymore.

Susan 55:59
Right? Yeah. And I have been much better about that. That that does help. And that's where I learned from she has arms, but I don't anymore. About the high. Okay. And that has helped my anxiety because I'm on my dad's side a very slow death for type two diabetes, unmanaged. Right. And so like when you know, when you hear people talk about, oh, how am I going to get my kids to understand the high will? You know, over the course of time we'll do this to their body generally thought happened? Right? What happened to her Oprah,

Scott Benner 56:36
but that doesn't even listen,

Susan 56:38
but it doesn't register to us. Of course, even though she's seen it.

Scott Benner 56:42
Yes. Yeah. Like that's him. Not me. Exactly. Listen, again. You know, how many people who smoke go to the doctor and like, Hey, I went to the doctor, nothing was wrong. Smoking doesn't affect me the way it affects everyone else like, Oh, yeah, sure it doesn't. And so I you know, and, and I get that, but again, if anyone sees are good, why are you worried about that? Right, I'm gonna leave all that silence. And when I edit this together so that everyone can hear you go, Oh, yeah, I don't know. Why am I worried about that? It's so worried about the things that need to be worried about. There's plenty of stuff in the world that needs to be worried about I'm sure you know, like, so in your world. Don't Don't waste time on the stuff that's working. Well. I mean, that would be like, literally, if I got done with you here. I walked through my house into my kitchen, which has now been standing since 2010. When we remodeled this house. And if I looked at the cabinets in the wall and thought Oh, I hope they don't fall today.

Susan 57:41
Oh my god, you're right. Oh, yeah.

Scott Benner 57:42
I really hope the cabinets don't fall off the wall today. Why would I worry about that? You mean like you can. It really is. It's where you're going to find your peace is to is to just put your effort and stop thinking of it as worry, by the way, put your effort into the things that need your effort. And the things that don't need your effort. Don't need your effort. They work. They just work. I tell my wife all the time. I'm like, Has this ever been a problem in our life? And she was no one I'm like, Well, why are you expecting it to be? That doesn't make any sense. We've never had an issue with this. For as long as we've known each other Why would you think that today's the day and and by the way, Susan, if today's the day, then deal with it then. You know like yes, it's interesting. You were you almost have the across that bridge when I come to it concept backwards.

Susan 58:38
Yes, I do. I do. Right? Like Yeah, I

Unknown Speaker 58:41
have. Good. I'm sorry.

Susan 58:43
Oh, no, I was gonna say I it's like, I have created my own Swiss Army Knife of useless crap.

Scott Benner 58:50
It really, it's interesting. You are a Swiss Army Knife of useless crap. Because seriously, I'll cross that bridge when it comes when I come to it about my taxes. That's a bad idea. The taxes idea you need to get to right away because that really is a thing that's happening and that has a time sensitive situation. My daughter's not going to understand high blood sugars and how it's going to kill her like my father but our eight one C is seven. That's really not something you should be thinking about.

Susan 59:20
That's kind of that's that's the definition of crazy, right? Right.

Scott Benner 59:25
Well, it might be a little bit but but at the same time and I see how it was not to laugh because it's it's a hard to like see it and not Yeah, and not be able to just stop. I mean that again, it's what's gonna stick with me when you and I get done talking today is, is this has been a really great upbeat conversation about a really kind of like dark idea, but right when it sticks with me later, all I'm going to realize is Wow, she is a bright woman who understood and still couldn't like, stop herself from worrying that the cabinets were going to fall off the wall. Like that's it. insane,

Susan 1:00:01
right? I mean, really? Yeah, it really is.

Scott Benner 1:00:04
It really comes down to at some point you have I said it the other day on an episode. I love this idea that a couple of times a year, frozen urine from an airplane falls and kills somebody. It happens statistically. Right? Right. But could you imagine if you wandered your entire life thinking frozen urine is gonna fall on my head and kill me in a second? What a waste that would be. And, and, and it really, I mean, I don't know what your motivating factor will be to get you back to clean slate faster. But that's what in my mind, that's what you need to do is you need to remember that you have to clean slate it sometimes there's going to be stuff that's going to pop in your head that you can't fix and make go away. So you just have to throw it out.

Unknown Speaker 1:00:48
And okay, recognize it

Scott Benner 1:00:49
soon enough that it doesn't pile up to where you can't see the desk.

Susan 1:00:52
I now have a new measuring stick. Go ahead. I'm just gonna call it the frozen the frozen urine measuring.

Scott Benner 1:01:00
I am not gonna worry about frozen urine falling on my head tonight that maybe is what you should say to yourself when you wake up.

Susan 1:01:07
I'm gonna measure it against that. Which one would be more likely? Yeah, well, some of my scenarios would probably be more likely I have to

Scott Benner 1:01:16
tell you that now that I've really considered this. It's very possible. I'm just going to call the episode frozen. You're on won't fall on me. And so I just it really, I mean, it really is. There are a billion things that go like I'll tell you something I so I bought we bought a house that was this tiny like shack basically, right? And we always knew one day we're gonna be more successful, we're gonna knock this shack down, because this is great property. And we're gonna build this better house, which we eventually were able to do. On the corner of this little thousand square foot house that we bought originally was this oak tree. And I had the luck one day of being outside long time years and years ago working on my house, and this old man pulls up, pulls in my driveway, and he says, Hi, how are you? My name is bah, bah, bah, I built this house with my brother and I lived in it for many years and raised my family here and I was like, Oh my gosh, so great to meet us in his 60s. Then he walked around the property with me there's this long line of bushes that he loved and I thought I felt so bad because I was I genuinely had already rented a machine to rip him out of the ground but it just hadn't been delivered yet. Right. And and then he told me about I have these a couple of these great oak trees on these oak trees on my property and this one that's right on the corner of the house. And he tells me one day my wife and I drove to the farm and he points back to where there are houses now behind me because used to be a farm back there. We drove with my car and a shovel. We dug up this little sapling. I planted it there. And here it is now. It's got to be no lie. 15 or 20 feet around and its base it is this huge, healthy, amazing tree. And Susan, if it ever falls, it's going to kill everyone. Oh, right on the corner of my house right at Arden's bedroom, right. And we had some bad weather this season and like really high winds and stuff like that, and art looks at me and goes, is my tree gonna be okay, and I would absolutely. And then I walked out. I never thought about it. I got what am I gonna do? Am I gonna? Am I gonna sell the house? Am I gonna? Like, am I gonna go out there right now and cut down 100 foot tall tree like what am I What? It's probably it's been there for since that old man was 20. And he planted, it's fine. It's never fallen. I pay somebody every couple of years to take the dead branches out of it so they don't fall on my house. I can't worry about that oak tree. I can't if that oak tree is what kills me, then. Then that's, that's how I die then I but I can't spend my time worrying about end. If I can't stop thinking about that oak tree falling and killing me that it is incumbent incumbent upon me to either cut it down or sell this house and move. But I'm not going to live in it every day wondering if the oak tree is gonna fall my house. That's I can't bring myself to waste my time like that. Because, Susan, but one thing that offends me more than anything else is wasted time. It really burns my ass in a way that like, I hate having conversations with people where they're lying. And I know they're lying. And they know I'm yeah. I'm like, why are we doing this? I could have a heart attack in a second. This is how I'm going to use my last couple of seconds. I had an order last night. I can't make it much longer. Like you know, like that. That kind of thing. I

Susan 1:04:37
might hit frozen. Wow. Yeah,

Scott Benner 1:04:40
I just don't. I can't abide wasted time. And at the moment, you are a delightful person with two wonderful girls. And a husband who's probably a saint from this conversation. I'm thinking yeah, and I don't want you to waste your time with it.

Susan 1:04:56
Right. Right, right.

Scott Benner 1:04:59
So I don't know. How are we gonna end this? Because we're at an hour. I don't know what to do.

Susan 1:05:02
Yeah. No, I you know, just hearing someone else say that. I'm, you know that I'm a delightful person, but then I'm wasting time because I wasted time. You can ask anybody that is a big annoyance for me. Sure. And because there's so much to be done in the day, there's so many things to worry about, you know, so many planes fly over my head.

Scott Benner 1:05:26
Exactly. It's Susan, listen, when you get done with this later, and you realize your husband should have told you this 10 years ago. Don't be mad at him. He still wants to have sex with you. I don't have that. I don't have to worry about that. So I'm able to say whatever I want to you. If you think I could say this to my wife, you're out of your mind.

Susan 1:05:47
Yeah, no worries about what's gonna happen there.

Scott Benner 1:05:49
I tried to bring up to my wife the other day, she comes to Oh my God, I hope she never hears as she comes downstairs. My wife has a when my wife's period comes her sense of smell like junk. Yeah. Right. So she comes downstairs think she smells something is like a mad person, like stomping around that everything. I don't smell anything. I don't know what she's talking about. And I stopped her and I just go, like I said, very thoughtfully. I'm not even kidding. I wasn't joking with her anything. I just said, Hey, you know, your periods coming in a couple of days, you know how your sense of smell gets? I think that might just be what's going on. Let me and I was gonna say like, let me take the trash out in case you know, there's a banana peel at the bottom that you're super sniffer is finding, you know, I couldn't even get those words out of him how she looked at me like I killed our children. And I was like, Oh, my God, I was just trying to be honest with you. What a mistake that was ruined the next two hours of my life, which is why your poor husband has not said this to you before. But why but why I'm able to, because I have no expectation that you and I ever gonna have sex.

Susan 1:06:54
That would be a feat in and of itself having been on opposite coasts?

Scott Benner 1:06:58
Well, you would think and so but, but seriously, like, I think what you were saying is right, is it sometimes you just need somebody to say something that you that you know, already? So I've done nothing here today is what I'm saying? Oh, well, you? Oh, well. At least that's another hour closer to death. We're good. But no, seriously, like, like, do you think like, so I feel like I should say something like more clinically valuable. Like if this conversation was helpful to you? Do you think that talking to a therapist once in a while is your answer? What do you what do you thinking is, I really want to know what this last hour made you consider

Susan 1:07:36
what I really need to know to say I need to take care of myself, but actually do it consistently. Like, I know what I need to do. I just need to make the time for myself to do it. Like instead of worrying about whether or not you know, gentlemen is going to be a 7.1 versus a 6.9 a one c Yeah, I should go to the gym, right and sweat it out. Or, you know, go to the movies or whatever it is I need to do for myself at that moment as opposed to just sitting there bawling and poop over.

Scott Benner 1:08:12
And you have to consider this to like, as you're talking about a onesies, Arden got hers yesterday is a five nine, the time before the time before that it was a six two. In my mind, I don't see any difference between a five nine and a six, two.

Susan 1:08:25
That's my point to it's like, really super serious.

Scott Benner 1:08:29
Right? And you shouldn't hear 5962 and then think of your seven one and go oh my God, what a heart. It's not a heart. Think of it. Think of it this way. The things that are encumbering you that are probably leading to your agency being a little higher than mine is. Are the things I'm not encumbered by so your your answer isn't to worry more your answers to worry less. And then they once he comes with it. And I and I do say this a lot. I hope people believe me. The less you think about diabetes, once you've got the plan, the easier it is and the easier it is the less stress that comes with less stress, less anxiety, less worried all it's almost I simplified it down to these ideas. I follow these ideas. If it doesn't go the way I expect I just start over again in my mind. And right and that freedom has allowed me not to panic and worry, I tell you there I used to cry out like you know, randomly, you know, and that doesn't happen to me anymore. Right? It's just it's it's it's a wonderful thing. It's just something that I genuinely believe you and anybody listening will get to at some point.

Susan 1:09:37
Yes. Yeah. Like I almost think I I've been thinking lately about not even having the share app on my phone. Um, but the concern there is I am the character, the nighttime caretaker if she were to go low.

Scott Benner 1:09:52
Susan, I don't think having the information is your anxiety. I think it's how you deal with it. That your anxiety because yeah, there You're just gonna worry about it still, right? Oh, yeah,

Susan 1:10:03
I just don't have any data to show whether or not

Scott Benner 1:10:06
don't out stone outsmart yourself like seriously like, you know, I listen if I'm you, yeah, and I'm not you if I'm you I go to the weekends, and on the weekends I push her her high threshold down to 130. And I tell her look, every time we hit this 130 we're gonna nudge it back a little bit, until that becomes her commonplace. And then you want to work, you want to stop worrying that our blood sugar is going to get high. reinforce the idea that we don't let it get high. And by and then once that becomes the way things go, then that's where you're that's where the anxiety goes away. I have not looked at Arden's blood sugar once since you and I have been talking not, I haven't even considered it. And I'm going to pull it up now for you. It's 84. Not only is it 84, but it's been between 70 and 130 for the last 12 hours. Yeah. And I haven't really thought about it much at all. And there's a pump change in there. And so and so, the point isn't that I'm better at it than you are because I not. The point is, is that I've gotten to a place that you're not at yet.

Susan 1:11:17
Yeah, well, and here's the other kicker is that I don't have any in reality, I have no control over Genovese numbers, because she takes care of it. All right. Yeah. Yeah. So why am I even freaking out?

Scott Benner 1:11:30
I have no idea says

Susan 1:11:34
all kinds of special. That's why

Scott Benner 1:11:35
I guess I listen. I genuinely think that it's something you can do. Can we keep in touch? I'd love to know. Yeah. All right. I'm gonna say goodbye here. Because we're like an hour and 10 minutes.

Unknown Speaker 1:11:47
Oh, sure.

Scott Benner 1:11:49
Thank you so much for coming on those.

Susan 1:11:51
Oh, no worry.

Scott Benner 1:11:53
Dexcom on the pod and dancing for diabetes. Much love. Thank you for supporting the show. Go to Miami pod.com forward slash juicebox. Ex con com forward slash juicebox or dancing the number four diabetes.com to learn more about the sponsors. Thank you so much to Susan for coming on and sharing so openly. That was amazing. There are a few more weeks left in 2018. We are going to finish up strong this year. A lot of great episodes including and get ready. When I tell you this you might want to hold on to something if you're washing dishes don't get near like a sharp knife right now. If you're walking through the grocery store, let's not bang into an old lady. Listen to this right here. Coming soon to the Juicebox Podcast in December of 2018. The star of ABCs blackish. Anthony Anderson. Oh, that's right. This is the podcast that delivers. There's a couple other ones, but I mean, honestly, you know, this is the best one

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