#539 Diagnosed in Iran

September 8, 2021Scott Benner

Shaya is the mother of a young child living with type 1 diabetes.

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Scott Benner 0:00
Hello friends, welcome to Episode 539 of the Juicebox Podcast.

On today's show, we're going to be speaking with Chaya. She is the mother of a child with Type One Diabetes. Who was diagnosed while they were on a family trip to Iran. It's a really interesting story that I think you're going to enjoy. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Have you been looking for a place to talk about diabetes online? Look no farther than the Juicebox Podcast private Facebook page. The page now boasts over 14,000 members 10,000 plus active every day, conversations about all kinds of topics, you're bound to find the one that you're looking for. And if you don't, it's cool. Just start your own conversation. There are plenty of people there just like you. We're excited to chat and see if they can help. It's called Juicebox Podcast type one diabetes, it's on Facebook. It's completely free and private. Check it out.

This show is sponsored today by the glucagon that my daughter carries. g vo hypo Penn Find out more at G Vogue glucagon.com forward slash juicebox. The T one D exchange is looking for type one adults and type one caregivers who are us residents to participate in a quick survey that can be completed in just a few minutes from your phone or your computer. This survey is 100% anonymous, completely HIPAA compliant, and does not require you to ever see a doctor or go to a remote site. Every time someone completes the process using my link, the podcast benefits. So if you've been looking for a way to help Type One Diabetes Research, the podcast are both nothing could be simpler, easier or more beneficial. Just go to T one d exchange.org. forward slash juicebox. When you get there, click on join our registry now. After that, just simply complete the survey and you'll have helped people living with Type One Diabetes.

Shaya 2:31
So my name is Shaya. And my son His name is Suren. He was diagnosed last November, November 2019. And he is five turning six in April. Almost six.

Scott Benner 2:45
How do I pronounce his name? Sudan. Saran? Yeah. All right. I want to make sure I get it right. Alright, shy? Okay. So oldest child only child.

Shaya 2:58
And I have another daughter. She is turning three in March. Okay.

Scott Benner 3:03
So your your first? How about? How about type one diabetes or other endocrine autoimmune issues and your family? Are there any?

Shaya 3:13
Nothing? No. None. He was the first ever and shock was big because we even haven't heard about it at all before.

Scott Benner 3:23
Okay, where do you live right now?

Shaya 3:26
So I live in Canada in Vancouver. But when he was diagnosed, we used to live in Edmonton in Edmonton. So last year, yeah, Albert.

Scott Benner 3:36
Alright, so Canada, gender diagnose, what was the diagnosis? Like how did it arrive?

Shaya 3:44
Yes. Um, so last year, it was in November of last year, not 2019. We had my cousin's wedding in Iran. And we booked the trip a few months before and we wanted to go to the wedding. So what happened? When we were planning the trip, we decided to stay two extra days in Frankfurt, Germany on our way, because that's where my husband grew up. And he always wanted to go back and check the ad where he grew up, right. So we booked this trip. And then about a month before the trip Saran got very sick like sick as he has ever been before after has this rash, fever, a strep throat. He was on antibiotics and everything. And that's when he started. Like being super thirsty, peeing a lot and drinking all the time. And at first we thought about it was the fever and he's thirsty. So he drinks and then he wants to pee, of course. And he got better, but it continued and then the thing was, it was on and off. So he would be peeing a lot one day and one day he was as normal, so we didn't think any of it like anything about it at first. And then I did at Google it like, a week before we went to Iran. And it came like it went to a page that was explaining type one diabetes. I was like, Well, of course, it's not this. So Never mind. And then I went out. And so it just continued to kept getting worse. He was like, his behavior was like, awful. He came back from daycare every day in such a bad mood, he would cry, and like he would scream at her. So he wasn't himself, I thought. And I just thought, well, it's something in daycare, something's happening at the daycare. And he was like, yeah, we're going to Iran, we'll figure it out after so then the day we were going like in the airplane, just imagine we are in the, in an in a flight for 11 hours, the flight to Frankfurt was 11 hours. And he was going to the bathroom every 10 minutes. And I'm like, kid, stop drinking, just don't drink so much water and he was crying, I'm thirsty is good. We were water. And it was like, I don't want to give you more was to stop drinking. It was crazy. It's like taking a kid to the bathroom in in airplanes, hardware itself. Just take him 10 every 10 minutes,

Scott Benner 6:27
six times an hour for 11 hours.

Shaya 6:33
So maybe it was sleep. And then he slept for a few hours in between that was good. And then he woke up crying, and I'm thirsty. I need to go and all that. But anyway, so we got to find four. And he's he was so bad. Like he was crying all the luggage was the worst trip of our life that two days in Frankfurt. And then I started like, I called my aunt there. And my aunt is a doctor in Iran. And she was like, maybe she just us just anxious because of the trees. It can be anxiety causing it. Of course, it can be type one diabetes, but like it can also be anxiety. So don't worry about it. Come here, we'll figure it out. And then I was like, okay, so it might be type one. And then we started worrying. And then we were really worried. So googling and we saw that oh my god, he can go to decay. And we are in Frankfort. We have no access to anything, don't know what to do. And it just like it was bad. So then next day, we went to Iran. And he like the wedding was two days after that. So the night the day before the wedding. He got tested, and his blood sugar was 290. I think it wasn't that high. And he's a one to one. It was 9.8. Wow.

Scott Benner 7:51
So to go back to the beginning, he gets sick. Did they ever diagnose the illness? Or did they just give him an antibiotic all the way back at the beginning.

Shaya 8:01
They didn't diagnose it, but based on his symptoms, I thought it was a scarlet fever. It was very similar, like his tongue and rash and everything. But when I mentioned it to the doctor, he just said, Well, maybe we can never be sure if it's a scarlet fever. But well, he has a structured so they get on to I say,

Scott Benner 8:22
Okay, so the diabetes symptoms and the at least the strep throat that you know about pretty much start hand in hand. Yes, yeah. Okay. And even though you saw the information about type one early on, that probably just seemed ridiculous. Yeah, yeah. Right. Like it can't be this. When you are in Frankfort, and you're now looking again, and you're pretty sure this is diabetes. Do you remember looking the first time in that moment? Do you think oh, I looked at this last month?

Shaya 8:53
Yeah, I was like, I was sure this is gnarly. Like, how can you be? And like, I don't know anybody. And then I kept saying it can be genetic. And I'm like, we don't have anybody in our families. Like I kept asking my husband, are you shorting more do you have anyway? I was like, No, well, you

Scott Benner 9:12
know, you do that thing. We're in the middle of helping my son figure something out. And you know, when you first see a symptom, you go to the most odd, you know, doctors do it as well. What's the most obvious cause of this meaning? What do we see most frequently in most people? And then as you start as you start whittling away the possibilities, and it gets less and less likely that you have this thing, it actually is getting more and more likely that you have it because you've said okay, well it's not this it's not this, it's not this and as you as you eliminate things, you get closer to the answer. But in your brain, you hear like, you know, 1% of the population has this or 10% of the population has this or you know, it's very uncommon less than 200,000 people a year get it you think well it can't be me, but it's got to be somebody ratio.

Shaya 9:58
Yeah. Like about I don't know, a year before this diagnosis, I read an article, another article, something lady wrote in Facebook. And she explained all her daughter's symptoms, and she was like, we didn't know that we should be worried like these ones. She was paying a lot. She was like her. He were she was acting odd and all that. And she was just like, warning other parents to watch out for these symptoms. And then it ended up being type one diabetes. And I was like, Yeah, okay, so it can't happen. And I didn't even remember that. I did not remember it. And when, like, after my son's diagnosis, and after we came back to Canada, it was I was searching in space with type one diabetes, and I saw in like, a post, and I read it. I read this last year, and I didn't even remember. Here it is. Right. So

Scott Benner 10:57
how long ago? is it now? 2019? Yeah, November 2019. Okay, so your, your year and three months ish? Like right around there? Yeah. How are things going?

Shaya 11:10
I'm not bad. I would say it's, we're trying to, like, tighten up the range for him. But I had breakfasts are hard. And the school is really hard, because they have very strict rules at the school. And he's in a provincial plan here. It's called NFS. So they under this provincial plan, we sit with the nurse and set out the plan. And we don't have many choices in the in like, there are some choices for the parent, like, do you want to give five grams of carbs here, or 10 grams. But most of the places not like many choices. So then these plans that are then the nurse goes to the school and teach the EAS that are present in the school to follow that plan. And they are not allowed to do anything outside of that plan. I said, So yes, they're very strict. And then I can I can really play with things. So one, like we try to have him eat the same breakfast every morning, give him the same amount of insulin. But then one day, he goes up to 300. And it stays up there. The next day he dropped flow. I'm like, he was the exact same thing. I don't know what to do.

Scott Benner 12:29
Is he? How's he getting his insulin through a pump? Or through injections? Yeah, he has Omnipod. He is a pump? And do you see maybe differences on different days of the infusion, like the first day maybe works differently than the second day, then the third day, etc.

Shaya 12:45
I shouldn't start dragging. And we just got the pump in November. Okay. So it's been only like two months. But I should have had a good idea. I should track that.

Scott Benner 12:54
It's an interesting, it's interesting to look at also different sites. So different places on the body may affect absorption. And when that happens, then you may need you know, more basil on your leg than you do on your belly, for example, that that kind of an idea or maybe, you know, at the very end of the infusion or the very beginning of it, it might not work as well as it does in the, you know, many hours in between. There's stuff like that he's using the CGM. Yes. Which one with Dexcom Okay, and so that's interesting. His he's eating the same exact thing every day are other meals more difficult than

Shaya 13:34
So, our dinners are. So we eat heavy dinners. It's just our family time. So I cook the main meal for dinner is usually high protein, high fat probably. So he does go high, right, like on two hours after eating dinner. So eat at 730 ish, and then he's his stocks go up at 930. And I notice I just can't exactly predict how much insulin he needs. So I give him like I have an alarm set to give him some insulin at 930 every night. I do it but I am scared to give him too much because I don't want to wake him up and then some nights it's just not enough. So I will be correcting like to 1230 constantly given another half you need another half.

Scott Benner 14:27
Yeah, you you have definitely fallen into the trap of I don't want to do too much so I do too little and then I stay awake until my eyes fall out of my

Shaya 14:39
ears. Not every night. Some nights I'm great. They're like perfect. We just go with a steady till the morning. But I like I give one unit and I'm like great or like attract the food. Like for example. I know. It's someone he needs three units at 930. So I give him three units and it's perfect. But it doesn't always work. we'd all like the same food and I haven't tracked all the food, the ads all. Are your are your meals culturally, like different than an average Canadian meal? or? Yeah,

Scott Benner 15:12
they are. Yeah, so I don't think I've had anyone on to talk about it yet. I should be, because I've had enough conversations privately. But I know that a lot of Indian families struggle with the the meals that they kind of traditionally use. And I was wondering if you were in a similar situation, but

Shaya 15:30
yeah, they probably are very similar to Indian foods or foods. Okay.

Scott Benner 15:35
Yeah, I know, the, there's usually a lot of rice, right? for you. Yeah. And then that becomes interesting. And like you said, then there's the high protein the high cut? Well, at least you know, about the protein and the fat rise that comes a couple of hours later. Did you learn that from the podcast? Yes, yeah. Cool. Well, that's good. I'm excited about that. Have you considered things like, there's ways to manipulate insulin. So if you, if you know, for certain you're gonna see that rise 930, every night, it happens, you could use a heavier basil rate starting at like 830, that maybe runs for an hour and a half or two hours to try to stay ahead of the rise and keep it from happening, you could try and extended Bolus from the meal, where you might take the amount of insulin that you're using for the meal, and then go look at all those corrections usually make, figure out what the least of those corrections usually is. And then you say something like, you know, we're going to, I don't know, I'm just using, like pretend numbers. But let's say it's four units for the meal, and you're correcting with a unit and a half. So maybe you say, we'll push the button here, we'll Pre-Bolus four units, and then we'll tell it to put in two for like, maybe like 70% now, and the last 30%, you can have a drag out over an hour and a half. And you could almost kind of create that wall with that extended part of the Bolus. But you a lot of people make the mistake of trying to. So stopping a late rise with an extended Bolus and extending a Bolus for pizza can be different. Because Yeah, because sometimes people use pizza as an example, because it goes in it doesn't necessarily hit you very hard right away, but then it ramps up and gets you later. So you need less upfront. More in the backend, where with this, you need what you need up front Plus, you need more on the back end as well. So there are a little ways that maybe you'd have to be seeing it every day for certain to do something like that.

Shaya 17:39
Yeah, I have to try those. I tried. Extended Bolus for a little bit. I just didn't like it. It was like I couldn't figure out how much exactly to add. It just was frustrating for me. So I started doing this other one to track each food and see how much corrections I gave for each one. And then but I'm still scared. So like, for example, I know. We eat rice almost every night. So rice with stew. So I say okay, so he had this much meat. And I know that that amount of meat and rice and stew probably needs 1.5 units at 930. But I'm scared to give it because he's sitting at like 80 and he's asleep. And I'm like okay, so he's 80 and I want to give him like 1.5 units. So I'm scared to do is I only do half and then I end up doing another to another one. In the next few hours. Yeah.

Scott Benner 18:45
What about what's his basil rate an hour at that time a night?

Shaya 18:49
It's zero point. 15

Scott Benner 18:52
Oh, it's how much is he weighs he little

Shaya 18:55
he raised about us not to like Oh, he's actually always a bit like and one second. Let me see. I have his way. I wasn't sure

Scott Benner 19:13
if you were looking for his weight or trying to find a way to call him chubby without sounding like you were calling him but I wasn't sure what. I wasn't certain what you were trying to do just so she tried to be polite or she looking for a number you know, what does he weigh?

Shaya 19:27
he's not he's not chubby? Well, he's like borderline I would say based on based on internet instead you're you're you're a little bit like close to being overweight or something but I don't think so. He doesn't look shabby at all. Yeah, so I found his weight he was 23 kilograms. I have to convert that pounds.

Scott Benner 19:49
I can do that too. One second. 5050 pounds. Okay. So now everybody's basil. doesn't follow any strict rules right like, point 154 50 pounds seems low to me.

Shaya 20:10
Duck these doctors said that too. He said maybe he is still like honeymooning. That's why it's slow.

Scott Benner 20:16
Okay. All right. So then that was my next question like is are you possibly getting help from the pancreas once in a while? Or not so so can I ask him? What's his Awan say? It was the last was 6.5 6.5 does? Does he have a lot of lows? Like under 70? No, no. So it does sound like then you're probably getting some help somewhere because I would just like if you made me just guess without you know ever seeing anything? I'd guess that is basil is closer to I mean, at least point three five somewhere up to point five. Oh, right. So that was my other thought is that can you get some of that insulin that you know you're going to need for that 930 rise in a basil rate like instead of the basil being point one five, you know, maybe eight 839 3010 o'clock and that hour and a half? They're like what if you made it more like I don't know, like point four an hour or something like that and then got that insulin You know, you're going to need but you still we're spreading it out a little bit so that if you decide you don't need it, you can just like stop the Temp Basal rate, and then you haven't injected a whole bunch and then you don't need it. Right. Does that make sense? Yeah. Oh, God. Yeah, I think you're just looking for ways to manipulate the insulin to do what you want it to do and be where you need it to be. Yeah. Do you have trouble with other foods like when you like if you go like, do something that's out of the ordinary and food do you do better with a Bolus ng g vo hypo pen has no visible needle, and it's the first premixed auto injector of glucagon for very low blood sugar and adults and kids with diabetes ages two and above. Not only is chivo hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G evoke glucagon.com forward slash juicebox g vo shouldn't be used in patients with insulin, Noma or pheochromocytoma. Visit g Vogue glucagon.com slash risk. Couple things don't forget the T one D exchange T one d exchange.org forward slash juicebox.

And while I have your attention, I'll remind you that the diabetes pro tip series begins at Episode 210 in your podcast player, and is also available at diabetes pro tip calm and Juicebox Podcast calm. Also at Juicebox Podcast, you'll find the series of how we eat defining diabetes afterdark and more. Check it out Juicebox podcast.com. Looking for support from people like yourself, find the Juicebox Podcast Facebook page. Wow, my lips stuck to each other when I said that. So I'll try again. Find the Juicebox Podcast Facebook page. It's private has over 14,000 members. And those people are just like you and having conversations about things that you're wondering about. Or just need some backup on Juicebox Podcast Type One Diabetes on Facebook, it's a private group, you'll have to answer a couple of questions to prove to the algorithm that you're real. And you'll be right in. Alright, he won the exchange.org forward slash juice box. Diabetes pro tip comm Juicebox Podcast Type One Diabetes on Facebook. Let's get back to share. Do you have trouble with other foods?

Shaya 23:51
So what I do is when when there's something new and I haven't tracked or no idea about it, I do exact exact math. And I put it in and so like I do I do exact math, but I do like put it in I do a little bit more insulin. And then I just watched him. And most of the times it's actually good. Yeah. And sometimes like if I see just going a little bit downward, I just do a Temp Basal minus i know 60 or 100 or something and it's just go Okay, gotcha.

Scott Benner 24:29
Yeah, that sounds like the way I think about it. So, I mean, what I can tell you is that over time, you get better at it in that you've had more experiences with certain meals and it just eventually you'll just, you'll just do it you'll put in the insulin and then you'll like it's been two hours later. I know it needs more and you're just going to do it even though the number makes you feel like they don't you realize you're just Pre-Bolus thing. In that second go round. You're really just Pre-Bolus seeing a rise that you that you know is going to Come but isn't showing on any of your data yet. So yeah, exactly, except for the data of historic knowledge from happening over and over and over again.

Shaya 25:09
So I know what happens every night. Like it's just it's not I haven't had a night doesn't happen.

Scott Benner 25:16
So why are you scared to do something?

Shaya 25:18
I don't know. Honestly, like, I hate that. When I have to give him juice when he is sleep. He turns like he gets so like, he jumps out and usually, like, hit my hand. And then the juice drinks all over it crazy when I want to give him to say, Hey, dude,

Scott Benner 25:40
did you ever you ever put the juice the boy, I'm sure this has happened, everybody, but you put the straw in and it creates some sort of a suction and the juices starts running out of the straw and you can't stop it. Have you ever had that? And it's, it's dark, and it's hitting you in the feet. You're like, You gotta be kidding me. And then you know, like, you get it cleaned up as much as you can. And then I'll like read, I'll say like Arduino you have to have a little juice. And I'll reach over. And if a drop of it should touch her anywhere. She's like, oh, you're spilling it. I'm not spilling it. Gravity is spilling out, leave me alone. But no. So I understand your desire not to give him juice. And I don't want you to either. But what I'm saying is, if it's proved it out this many times. You're just you're just ignoring reality. If you're doing that, like you're literally letting your fear stop you from stopping something you know is going to happen in favor of something that might happen, but that you don't think will happen. And that was not English. But you know what I mean? So go for it one night. It's Friday night tonight. Try it. Just go for it. I mean, what's the worst thing he drinks a little juice and you don't do as much the next time?

Shaya 26:49
Yeah, that's true. And I tell myself every night like last night when it was one of those night, I'm like, I'm giving him half a new unit. I know he needs more. And it's going to cause me so much though. I was up to two last night. I was like, Just give me one minute. We are done with it. But I have to I have this. Are you self

Scott Benner 27:13
flagellating? You're torturing yourself on purpose? Or will you? Listen, if it makes you feel better? You're at a place that I think everyone finds themselves at at some point. And now you just have to make the the more conscious decision to just do it. And so you can see what'll happen if you do it that way. Instead of being afraid you just got to put the fear away a little bit.

Shaya 27:39
Yeah. And I just listened to that Podcast, where you talk about that. And I think that was last week. I listened to it. Like, yeah, I can do it. I am in the process.

Scott Benner 27:52
Yeah, good for you. No, I have to tell you, to me, it sounds like you're doing extraordinarily well. And you're just you know, you're coming up on the speed bumps and climbing over some of them faster than others. That's all. Do you feel like you're doing well?

Shaya 28:07
Well, I think so. I do great with pizza. He loves pizza. And we do have pizza night once a week. And I am great at it. No. Oh, I get like I I'm proud of myself for those small moments of victory. You got a lot of compliments from his doctor on on our last visit was like, You are one of the few patients I have doing this good. You're like 80% in range and like he was happy.

Scott Benner 28:41
I'm glad that it really does sound to me like you're doing well. So I would be thrilled. Are you kidding me? Every time I get something, right? I just like take a half a second in my head to be like, Yeah, I got that. But then once it starts showing it to me over and over again, then you got to just trust that it's gonna happen, I guess. But you'll get that. So I guess I want to I know we're jumping around. But I'd like to know what happened. So was he diagnosed in Iran?

Shaya 29:09
Yes. So that's it. That is his story for itself, like, so yeah, we were in Iran. And so he he's legit. So my aunt is a doctor, I said and my my husband has a lab in Iran. He's also a doctor and he has a lab. So he went to his lab and they gave us the result right away. And my aunt was like, I don't know any endo like trician and endo here in Iran in like our city. So let me call her up and she couldn't find anybody. And she just went online, googled it and found a doctor. And she booked an appointment for us right away. So we went to her office and she was like, rude and she Usually like, you know, like you just got diagnosed, nobody knows anything around you. Like my aunt didn't know mine. She's a gynecologist. And she got in there, and she's like, your son is short. And he's two teen. What's happening to him? He didn't she didn't even look at the results. And I'm like, Can you look at the results, like test results? And she's like, Oh, my God, your son has type one diabetes and like, yes, no, I think so. And she's like, so what do you want from me? Like, I don't know, like, tell us what to do.

Scott Benner 30:38
might be the one to answer that question. Not me. I i right now, I'm working on the word of a gynecologist. So I'm in trouble.

Shaya 30:49
So don't tell me what to do. I have no idea. And I'm not home. And I don't know. So she was like, yeah, you have to, we usually just admit to the hospital for 10 days. And I'm like, we are only in Iran for 10 days. Like, I don't want to spend my 10 days in hospital can do you have any other options? And she's like, No, you have to be admitted. I said, Okay, I want to go back to Canada. How can I go back? And she said, Well, I can give you some insulin, you give it to him two times a day, one unit, just like that. And we'd like breakfast, lunch, and dinner, and go back. So I came home, crying. And like we were crying. My husband and I we just were taking turns, one of us would play with Sudan and the other one cry and the mystery. So we got home to my aunt's house, and my uncle was home, who has the lab. And he was like, Don't even think about going back to Canada, it's a 24 hours trip. You don't know how he will react to the incident, he might be very sensitive to it. So you don't want to risk that just don't even think about it. So I really like it was just, and my grandparents were crying. And everybody was crying in the room. And it was the wedding night, right. So everyone should be happy. And it's amazing. And then we are all crying. And so my aunt called here, her best friend and her best friend is a head of pediatrician Hospital in Iran. So she called her she was like, Okay, what do we do, and she said, Don't bring him here, because we don't have endos full time at the hospital just take him to a general hospital. So in Iran, the hospitals are like general public, for people who can't afford to go to private hospitals. So the the Children's Hospital that we first wanted to go to is a private hospital, which is like really good. It's like the hospitals here. And then the public ones are just like, only people who can afford to go to private, they'll go there and it's not like very good. But you didn't have any choices really. And they said it's just the best option for you because they have full time and those so we got the the admins knows right away and because my aunt call and everything, so it was good. We got we got admitted. But they said we don't have any beds. So we had to stay in the ER for two days. And then they kept saying we can't give him insulin here. He has to be like admitted to the room to give him insulin. I was like the doctor said you would give him he was asleep at like 300 and it was a no we can do it here. He has to be admitted to the room. Then they will start. They gave him one. I have one like one IV at the beginning. But that was it. Yeah. So we were like mad and they were fighting with them. It was just bad. I'm you know, like, you're not home. I didn't even know that he was hungry. You know how they are hungry at the beginning after diagnosis. He was constantly hungry. And he kept saying I want the specific food. He wanted a chicken kebab. And it's 1am and whether you get chicken and have a red one, yeah. So because my mother in law, and we were like, just find the like, Is there a restaurant open? You can buy chicken come up, and then once they started making him she can get

Scott Benner 34:26
somebody to make informed consent. It's lovely that that you got somebody to make it for him. Oh, yeah. I have a question though. Um, so you're in. You're living in Canada, but I'm assuming you at some point lived in Iran. Yeah, about 15 years ago, I was gonna say how long ago was it? So do you feel like when you're there, do you feel like a foreigner at this point?

Shaya 34:53
I feel like a framer, I but I still feel like I have a different Culture, my culture right now it's more can you and anyone, but I still live there for 20 years of my life. Okay,

Scott Benner 35:07
so you're not a complete fish out of water while you're there, you just have a different perspective. Okay, so I was just trying to figure out if you didn't like if you had never known or how to like traverse the system there, or if it will just the system itself doesn't lend itself well to this problem. I actually looked before you came on. And I went all the way back to as far as I can go. And some of my my data like back to 2017. I looked for collectively, and the podcast is way more popular. It lives in Saudi Arabia, Egypt. And in that part of the world, like those are the most popular places. It's downloaded in Iran. It's downloaded in Iraq. It's downloaded in Afghanistan in Pakistan. It's pretty it's really popular in India. moreso than Saudi, but I just I didn't know if it was just like not, is it culturally not common for people to look for help like that? Or is there not even a pathway for them to look is English?

Shaya 36:12
Yeah, English. I was going to say currently, India, they are good with English they I live in in the in India, actually, for three years. I did my bachelor's degree there. Okay. So their English is really good. They are good. But in Iran, most people don't understand. I even introduced your podcast to a few people. And instead, if the English is good, like one of them her daughter is 13, I think and I said is How is her English? and her mom said, yeah, it's really good. She's going to classes and everything. I said, Yeah. Have her listen to this podcast. So I'm introduced to some people, but usually no, yeah,

Scott Benner 36:51
yeah. It's interesting, because the show is also fairly popular in Japan. But I think that's mostly ex Pats. I think that's mostly, you know, transplanted Americans living there. So it's just it's, it's interesting to, to see where it, it just makes so much sense that it's basically around where English is easily understood. But I'm glad I found you and that it helped them. And then it's maybe helping, but I think that that's just sounds extra frightening, because because you really did get I mean, even once you got to the endocrinologist there, they here take some insulin jump back on the plane, I count as bad advice. I Yeah, I agree with the advice. You got to not do that. But I wonder what would have happened if you put him in the hospital for 10? Well, what did you end up doing? Did you I mean, you're in the hospital. Now. How long? Was he there?

Shaya 37:46
Yeah, we were there for like five days. So I kept pushing. I was like, I know, like, I've learned everything, just let us go. And they were like, there was this one doctor, he was actually a resident. And he was, he hated me from the beginning. Like, he would be like, do these classes for us, and I will type whatever he was saying in my phone. And like, you know, like in Iran, they don't do that. They have paper and pen, everybody. But I don't I have my phone and I typed everything in there. And it was like, are you listening to what I'm saying? Do you even care? And you're on the on your phone all the time. Like, I'm just typing what you're saying in my phone. He was pushing back on, like, please release us. Like, I know, I really I've learned kept counting. I learned everything. And just let us go. I was like, No, I still have to quiz you on a few things. And he would ask me questions like, what happens if like he goes low? And I don't know what happened. And then the main doctor, the endo main. And though he was really nice, and then yeah, you're ready to go. So we said like four or five days that then Okay,

Scott Benner 38:59
well, you got up there a little Did you miss the wedding?

Shaya 39:03
So he was the night, the second night at the hospital. So I begged my son I was like, I came all this way to go my cut to get my cousin's wedding. Can I go? Oh, and by the way, so the hospital it's a woman only woman and children. So my husband couldn't go up to a room at all during those five days. And I was like, I'm just going out of my mind. I've been up 24 seven with him for the past few days. And so I asked them if they can temporarily allow my husband to come home and they said no. So my sister in law who was also supposed to go to the wedding, but Well, she was further as she came there and my son like she he didn't even know her like, she has her arms but they never met before like other than that trip, right? So she was like, No, I don't want to stay with her and then she brought her a gift a game and they started playing And then I was like, can I go? And then he said, Okay, go. So I resigned from the hospital to the wedding, I got there late. And then I, my mom had my dress with her and my daughter was there with my mom. And I just put on my dress, like, I didn't even do makeup or my hair or anything. And then in the dressing room of the salon, our family, they just like so many of them came in together, and they just had heard about strength. And then everybody just burst out crying. And then I'm like, I want understanding the laughing like stop crying. It's a wedding. Just leave it just let's think about it tomorrow. Don't

Scott Benner 40:46
well, everyone's already so emotional, probably from the wedding. And then you get this news. And just it's easy to start crying. I I have to ask you men aren't allowed in the hospital. Was that specific to that hospital?

Shaya 40:59
I think it's the only children's hospital or something. They only allow children and women like the moms can go with the children. It was a children's hospital. And the moms can go with the children because then the moms because you know it's a Muslim country, and the moms need to have her job. So for the moms to be comfortable and not needing to wear hijab on men. They I think that's why they put that rule. But it's awful. It's just like off like, how do you expect the mom to be up? We take it 24 seven. Like some of those kids, they were like crying all day all night. And the moms were all like you could just see we're all exhausted. Yeah, just I know that that's coming for a second.

Scott Benner 41:44
It's probably a rule that men jumped up to get some time off when their kids are sick, don't you think? Yeah. Well, we'll say the women have to go in the hospital. That way I could sit at home. Or they're male doctors.

Shaya 41:58
Yeah. But they only come in at certain time. So you know, when they are coming in a shot. They're like doctors are coming in. Everybody knows that men are coming in. Gotcha. And then

Scott Benner 42:09
and then everybody puts a job on.

Shaya 42:12
Yeah. Oh, they don't remove them. Nobody removes. I didn't wear my heels. Java. Nobody cared really. But the people who care they don't remove them. It's just that they are more comfortable. I think I see.

Scott Benner 42:24
Okay, now I just I want to cruise over without getting an explanation because I didn't understand completely.

Shaya 42:30
It's just a totally different culture like, like even when I went to pay for the hospital, the cashier the he was like, it's so the currency there is really high. So it's like it's 3 million. riyals you have to pay. I'm like yeah, I know. Like, do you want to go your call your husband? I'm like, No, just take it from my car is like, does he need to sign like, No, just thinking? Oh, my God, I can pay.

Scott Benner 43:00
Back in Canada. I buy bagels all by myself. Just so that's Yes, sir. Oh, wow. I don't need your husband to sign. Oh, it sounds like 1950s. America, except still worse than that. Yeah. Oh, we won't talk to her. Well, we'll wait till the decision maker shows up.

Shaya 43:21
Exactly. And it's not like that everywhere. But after a while they thought, as I said, it's just a public hospital. And usually people who go there are like that, like they are in poor families who only the husband is the breadwinner, and not even like good money. And it's like that, usually. And so it's the culture of the hospital, I would say not Iran. It's not like that.

Scott Benner 43:49
I see.

Shaya 43:50
That's why I was shocked to because I was like, even in Iran. I didn't expect that. I'm like, why do you want my husband like what's going to have so many women working and I'm so when you when pay for everything? It's not like that.

Scott Benner 44:04
Those people would be amazed that they were in this house because I don't get to decide anything. So they'd be thrown? Hey, how many is 3 million? How does it convert to American money? What did you pay for? I think it came to a $1,000 for five days. That's very reasonable.

Shaya 44:21
Yeah, five days, we didn't have any insurance, nothing. So everything together came to 1000 with the labs and everything because we came back and we claimed it here.

Scott Benner 44:33
Wow. Well, even that's lucky that it worked out that way. And it wasn't some massive amount of money that you couldn't come up with, you know, that would have been even crazier. I don't even know what they would do then.

Shaya 44:45
For sure. That was another reason like I was worried about Germany. I was like, if something happens here, I don't even know like where do we get the money? It's probably so much but in Iran. It's not It's not that

Scott Benner 44:58
neither of yours your euro Canadian said. Right. We are all kidnapped. Yeah. So it's not like it's not like even somebody. Oh, wow. Well, that's terrible. I'm sorry. How was that? How was the trip home? Did you have enough understanding that the plane ride home was reasonable?

Shaya 45:16
Yes, the plane home was reasonable. It was just I saw on our way to here and I lost my phone in Frankfurt Airport. And when I called them, and they said, Okay, come grab it. It's at whatever station. And when I went there, my daughter was sleeping on my husband's shoulders. So I said, Okay, so you sit here with her, and I take student with me to go grab my phone. Now, I didn't know that we have to exit the transit area to do that. And I grabbed through him without anything. So we didn't have Dexcom, of course. So I didn't take his matter, like blood glucose monitor. I didn't take any snags for her. I didn't take my credit card I took took nothing with me just my phone. And that's it. I think the like, in I wasn't experienced enough. So you know, like, you're diagnosed like 10 days ago. And I wasn't experienced enough in the situation to grab that bag or something for him to like, have everything in it. And then we had to work for three hours with, like Sudan and I, we just couldn't find my husband. When we got my phone. We couldn't find him. And we went to so many different places, we could not find him. And then he started crying, saying I'm hungry. So I'm like, okay, his blood sugar is probably no, I can't even test it. And I have been walking for three hours. And then I don't even have my credit card to buy him anything. I went to this the food shop to me, and the guy that was from Iran. And he said, I was like, Okay, so my son is very hungry. And I need to buy him something. And I will try to pay by my phone. Because I have like my credit card on my Apple iPhone. So I'm like, I can pay what with this and it wasn't working. So the guy was really nice. He said, don't worry about it. Just take it out. Let him have he have it. And so like you're lucky Yeah, but it was awful. And then finally, we found each other after three hours of working. But otherwise Other than that, the fact that as I said, like, I feel like I wasn't experienced enough to say whatever wherever you want to go, even if it's five minutes, just grab that bag bag with you to have it's nice to have the matter to have. What do you mean? Yeah, it

Scott Benner 47:44
becomes so second nature. Eventually. I just this morning, I was up here getting ready to talk to you. And Arden came in. She's like, hey, my Dexcom needs to be replaced. And she's like, would you give me a hand with it? And I was like, Yeah, sure. So I get up to walk downstairs. And my phone's just sitting on the desk. And even though now I realized her, her Dexcom is not working at the moment, right? It needs to be replaced. I still felt uncomfortable walking away from my phone as I walked away from I looked back at it and I thought I don't need that. She's not wearing a CGM at the moment. I don't need my phone. But as I walked away from it, it felt very, very unnatural to leave it behind. And yeah, but in the beginning, you're right in the beginning, you have to physically remind yourself, take these things with me when I leave, like like, because it's just not, you know, it feels like you're tied down. But that feeling goes away. But in the beginning, you're like, Oh, I have to have this stuff with us. And it feels like a burden. But it just becomes very natural. And you don't think anything of it. But that makes that makes sense. Why did it take so long to find it just because you didn't know the the area?

Shaya 48:50
No, because they sat where we came out of the plane right when we came out and they said you're not allowed to go back there. So the doors were one away out from there. And I couldn't go back in and he couldn't come out because he had three hand like hand luggage is and then it was sleeping baby

Scott Benner 49:12
with him. So you had to like literally find a way back to where he was.

Shaya 49:16
Exactly. And they said like the doors are one way. And then anywhere I went like they have like mostly it's a very big airport. So I went to a gate to go back in and they would say oh, this gate wouldn't end up where you want to go. And then I kept tracking with Find My iPhone. I keep tracking my husband's location and try to walk toward that that but then at one point I had to turn and then it started getting further away. It was crazy. And then I find this guy and like, just helped me please help me find my husband and then he's like, Okay, and then he walked with me for store and he was like I think I do have to go from this gate. And then I got into that gate and they were like, No, you can go from I'm here because your ticket says gate a and this is gate B. I'm like, but my husband is at the end of me. And they're like, No, you can go, oh my gosh, Hey, you

Scott Benner 50:09
know what all that that that experience? Obviously, you didn't know enough about diabetes to be very worried about it. But if right now you got separated from all of suresnes gear for three hours, would you be panicking? Like now that you understand the diabetes better? Do you think you would have had a different like, reaction? I would be panicking more than whether it was then I would think so. I, you know, I'm thinking about just now, Ardennes changed. I was like, Alright, so we tested, did the CGM change gave her some insulin for the number we had. And I was like in an hour test again, because I want to make sure we're still going in the right direction here and not getting too low or too high. And yeah, I just wonder, I guess you just have to do what you did, though, go off for your feeling, you know, kind of treat hunger maybe as lower blood sugar because it's, you're completely blind. Right? So you have to make some decision, I think you did a really good job with it. Honestly,

Shaya 51:07
I just had no idea. You know, like, at the beginning, they just tell you test every two hours and give this amount of insulin with food and Okay, I'm doing that. So and I didn't expect to be walking for three hours. I didn't even take insulin with me. Right. So I'm like, okay, just like, I guess he's okay. And then his doctor in Iran told me there was this once I was like, do I need to stay awake with him all night to make sure he doesn't drop low? And then she said, No, don't worry about it. He if he drops low at night, he will be so uncomfortable and tossing and turning and crying and stuff that you will know. But I don't trust that like, No, I know. I shouldn't trust that.

Scott Benner 51:51
That's not a very technical answer. Exactly. Exactly. You're coming shy? Don't worry. Great. Thanks. Oh, yeah.

Shaya 52:02
So back then I wasn't worried. I was like, Yeah, he drops? No, I would probably know. Right. So the doctor said so. Right. So I wasn't worried. But now I can't even imagine being three hours without his

Scott Benner 52:14
Yeah, bag. That's interesting. But I mean, it's somewhere in there. There is also a lesson that he was okay. So you don't I mean, like there's a middle ground, you have to find between vigilance, worry, and common sense. But you need time with diabetes to figure out the common sense part of it. Yeah. So it's interesting,

Shaya 52:34
and probably when, like they are older, would be easier for them to know their body and all that you probably know that, like, a younger kid, compared to an older kid would be easier to manage, you could at

Scott Benner 52:49
least ask them more pointed questions, he would think and try to come to a better answer. So is there anything that I haven't brought up that you meant to talk about? I want to I don't want to miss anything?

Shaya 53:01
Oh, um, no, it's just so one thing that I don't know if like, I wanted to, I was thinking I was still thinking about this to bring this up or not. But I know like, so many people in us struggle with paying for insulin. And that's, that's big. But again, Canada, it's very, a lot cheaper with the provincial health plans. But then in Iran, it's crazy. Like I haven't, I met a lot of people in the hospital. When I was there, there was, I think, five more kids, same ages to learn, just got diagnosed, we were like going to classes together and everything. And we had we made a group chat, and I've been in contact with them. And I think probably many countries go through this. But insulin just is so expensive there for them. And then the government announced a few months ago that they they want to stop importing insulin, and they just make insulin inside Iran. But it's the very old insulin called regular I think, what's the call I'm sorry?

Scott Benner 54:26
Regular. Oh, they're gonna take you back to regular and mph.

Shaya 54:30
Yeah, yeah. So in Iran, so they are making that so and they are forcing people to just use that instead of No, we're happy lentils and everything. So it was big. I just got a lot of media attention and people I don't know what happened with small quiet now. But I think it's because of the how much it costs. It's expensive. And they just decided let's do like created inside there on the butt. They only have access to the technology to create that. Okay.

Scott Benner 55:05
Trying to read online looks like it looks like in October, it says us sanctions cause acute insulin shortage in Iran. Millions of Iranians at risk for us sanction. Oh, I see there's no insulin out. Okay. This is a, this is a trade problem. And the way that the country is trying to cover it is by making older insulin probably because it's easier to produce, I would think, yeah. And you don't need Yeah, I would guess that's the idea. I'd have to

Shaya 55:34
and they won't be any access to pens. So they will have to inject with needles and like these kids, it's just, they have no access to palm. So Dexcom, nothing. Dexcom is not even available. Like it's, they can bring some some people can buy them by Dexcom from Turkey or other countries. But it's super expensive. It's like one, one Dexcom costs one month salary for them. And the likes I know someone she said, I'm selling my house, put the money in bank and with the monthly interest I can pay for my son's Dexcom. Wow, that's incredible. So they are struggling today. It's no pomp like I have one person who was able to finally find pomp for her daughter, but then with the sanctions and everything, they stopped having it. So they went back to injections.

Scott Benner 56:35
I wonder if the new administration in America is going to impact this at all? I wonder if it'll change because of that or not? I'm not certain. I mean, I don't know. I can't learn enough just looking at it right now to find out. But that's terrible. She sold her home.

Shaya 56:51
Yeah, yeah. So we were lucky. I feel really lucky and thankful to have access to all the technology and everything. And it's different. It's

Scott Benner 57:05
hugely different life. Yeah. I mean, they're, they're, they're genuinely talking about going back and using insulin that probably hasn't been regularly used in America for I mean, 30 years, maybe even know a long time ago. And and you can't count carbs with that, that now you're just giving yourself those like, inject some in the morning and jack some in the evening, you know, that kind of a plan, which is not much of a plan, especially a given that the that the the meal choices are going to be pretty, you know, hard on the insulin tool, I would think. Yeah. I'm glad you brought it up. I'll see what I can learn about it before I put this up. And I'll put links up with it if I can find something that makes sense. So how did you find the podcast? I like your podcasts in general. Yeah. Not podcasts in general. But mine specifically?

Shaya 58:03
Yeah. Well, I don't listen to any other podcast. I did anyone.

Scott Benner 58:08
Would you say this is the only podcast you listened to? Yeah, perfect. That's what I want to hear.

Shaya 58:16
So I love it. You you. I think you hear this probably so much. I love you. I love your podcasts. I love what you do, I hope. And I hope all the best for you for doing this. And, you know, I don't know, like, you probably don't want to have this on the podcast. But I was listening to one of your episodes. And you were saying like it was at the beginning. You were saying I don't want to run any advertisements or anything because I just love to do this. And I'm like, Why? I love what you do. You should run advertisement.

Scott Benner 58:51
Oh, was it a recent one where I was like, I'm just putting this episode up? I'm not putting any ads on it. That kind of thing. Yeah, yeah. Sometimes, sometimes I just have so much content, I want to get it out. And I you know, I've satisfied the advertisers for the week. And I just was like, well, I just I still want to put this episode up. So I'll just put it out without ads on it. And then yeah, it's just But listen, I appreciate that. I really do. I don't have any trouble. Leave it in the episode. I am. I want to. I mean, I want to put out a good podcast and it takes a lot of time and a lot of effort. And because of that, you know, I did start out not taking ads. I wrote a blog for a very long time where I turned ads down constantly. But this is a this is a podcasting is a time suck that is different than just writing online once in a while. And if I didn't I literally if I didn't take advertisers on the podcast, the podcast wouldn't exist. Because my wife because my wife would be like go get a job. So very quickly, she'd be like, you wouldn't just sitting around making a pie Cast? I don't think so buddy, get moving. But I love that it helps. But where did how did you find it? I mean, if you don't listen to podcasts, how do you find a podcast?

Shaya 1:00:09
So what I like when I was still in Iran, I posted about the Sudan diagnosis and my baby mama, mommy group or like, Facebook group, I don't know what it's called. But then it was a Facebook group for April 2015 babies basically. And I posted about they had gnosis and I was like, I have no idea what I'm doing. I'm just so scared. I don't know what's happening. And someone introduced me to someone else whose kid was diagnosed like a few years ago, and then that someone else introduced me to a Canadian group of parents of type one diabetes. And that's where I found about Juicebox. Podcast,

Scott Benner 1:00:54
marketing scam. I could not plan on purpose. That's for sure. So you're so you're in a Facebook group just for kids born in your like, day, month and year? Yes. Then you meet a person in there who moves you on to another place. And that's where you Wow, that is a that is not a straight line to finding something that's for sure.

Shaya 1:01:14
Yeah, so I found like, the lady was really nice. Like, a few years ago, my daughter was diagnosed, but she was I thinking us maybe. And she said, there is a group for Canadian parents. So just join that would be really helpful. So I joined that. And then I was asking so many questions are like, how do I control this and that, and then someone wrote a column saying, Yeah, just like, join, like, Listen to the sports podcast. It's amazing. And that's how it's, we'll see.

Scott Benner 1:01:41
I'll tell you what, you somebody suggested the podcast to you. It sounds like to me, because you were asking pointed, probably thoughtful questions. And they were like, you know, if you're looking, if you're trying to look that deeply into this, this is probably the place for you to be asking those questions. Yeah, that's Yeah, that's excellent. I'm so happy. I don't know who did that. But that's really lovely.

Shaya 1:02:02
There's a lot of funds in our Canadian group that isn't. So just like, I've seen so many comments like that. It's just goes down. Like everybody says, I've done it to so many people just go listen to podcasts.

Scott Benner 1:02:15
Thank you. I very, I very much appreciate that you can that the show's pretty huge in Canada. I mean, it's obviously, it's obviously the biggest in America. But after that Canada, Australia and the United Kingdom are sort of the next larger download places.

Shaya 1:02:31
You would expect that with the English language new and

Scott Benner 1:02:35
so maybe I have to stop worrying about how to get the podcast to be bigger and just teach people to speak English. That might be the quicker

Shaya 1:02:42
I was going to I was going to suggest the other I was going to say maybe you have to translate or, like have some translate, I don't know, I have

Scott Benner 1:02:50
to tell you, I have thought that through six different ways. And it just never works. Because if I don't know the the language that we're translating it into, then I can't kind of quality check the translation. And then I'm stuck. And I would never want somebody to say something that ended up not being correct. And so that's where I sort of get stuck on that, because I've definitely thought about that for especially Spanish speaking people. I mean, that seems like a big population that's underserved. And I have talked about Listen, the truth is if if, if an advertiser, you know, I'm not even saying one of them that I have now, but if there's an advertiser that would be willing to foot the bill for it, what I've learned is, it's just very expensive, because you have to hire professionals to basically listen to episodes and then translate them out. And it's not cheap. So it's not something I can afford for certain.

Shaya 1:03:44
And you have you have great voice. So I don't know how you find someone to have great voice command.

Scott Benner 1:03:51
I appreciate that. I am I you know, it's funny when I talk privately to people, and they're like, you know, how do I make a podcast? I'm like, Well, the first thing to know is that most podcasts fail. So you know, you can definitely try it. I said, but there are some intangibles that you just can't, you can't manufacture. And I do say sometimes, like I have a nice deep voice. And that's how, you know it's helpful to listen to. I find it my own life when I start talking. People just sort of like get mesmerized a little bit. I just think it's I don't think it's what I'm saying. I just think my voice is deeper. So yeah, a little little heads up there for me a little little extra boost. But I really appreciate you coming on and telling me that whole story. It's fascinating, and I appreciate it again, people won't know this. But you let me move your time at the last minute. I was having trouble. Yes. No, you were very kind. So thank you.

Shaya 1:04:46
No, no draw and I was happy and thank you for having me and talking to me. I'm great points and suggestions. You might help him to manage that nighttime riser. So I'll try those. When you send me a note. Let

Scott Benner 1:04:58
me know Yeah. Oh, for sure. Excellent. I would love to know how it goes. And I'll actually if you if you get back to me the next couple of months, I will put a little addendum on the back of this and let people know what you said. Okay, thank you so much. Have a great weekend. Thank you. Yep, you too. Thanks. Take care. Bye. A huge thank you to one of today's sponsors. Je Vogue glucagon. Find out more about chivo Kibo pen at G Vogue glucagon.com forward slash juice box, you spell that GVOKEGL you see ag o n.com. forward slash juicebox. I also want to thank my guest today. And thank you for listening, supporting the show, sharing it with others and all the other great things that you do. I'll be back soon with another episode of the Juicebox Podcast. Thank you so much for listening.