Scott Benner 5/3/22 Scott Benner 5/3/22

#674 Autoimmune Hepatitis and Type 1

Emilio has autoimmune hepatitis and 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 friends, and welcome to episode 674 of the Juicebox Podcast.

On today's show I'll be speaking with Emilio. He is 18 years old at the time of this recording, has autoimmune hepatitis, type one diabetes, and has been through COVID. He is a remarkable young man, and you do not want to miss this conversation. Emilio, if you're listening, your file got kind of lost on my computer for a little while. I'm sorry this took so long to put out it was not on purpose. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, in fewer than 10 minutes, you can help go to T one D exchange.org. Forward slash juicebox. Join the registry take this survey helped people living with type one diabetes, T one D exchange.org. Forward slash juicebox. There's like a tiny bit of space left here. I don't know what to do with it. Oh, well, it's gone.

This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor, get started today@dexcom.com forward slash juice box at that link. You can also find out more and see if you're eligible for a free 10 day trial. Speaking of free trials and the possibility that you'll be eligible for them, you may be eligible for a free 30 day trial of the Omni pod dash on the pod.com forward slash juice box. More details later on in the ads.

Emilio 2:08
I am from a little country in South America cold weather. I was diagnosed with type one diabetes on July 2016. But I'll go but it all goes back to when I was three years old. At that age, I was diagnosed with how autoimmune hepatitis my life was based on living in one hospital on to next one. And going back and forth in Ecuador and Argentina because at the time, getting good treatment for autoimmune hepatitis in Ecuador was very difficult. And the doctors in the country told my family that I will not leave for long here. So my penetrations recommended to seek treatment in Argentina, even that they were better equipped. So my life went through that until I was 13. And then I started to forget, I have headaches started to be allowed to drink a lot of water. Until one day I just finished school and then my family and doctors started to figure out what's wrong with me. And they really thought the problem was my co better because I had mural stones and the stones, the doctors finally remove it from when they did their blood work. They never tested for glucose. Okay, so I went through surgery and everything went well until I woke up in the recovery room, and then fainted again. They told me I started really heavily and I had a sort of compulsion. Then the nurses entered the room and they checked my glucose. My dad has a number on his head, he always told me it was 523. After that happened, they moved me into the intensive care unit when I woke up. And I remember I was surrounded by those doctors and how to sort of cables and tubes connected me to machines from that. From there. From that moment, things were not so bad. I started to recover. But I couldn't feel my rent like completely. Then the days passed. And I started to rain sensitivity in the upper part of my leg. But the other part was not working. So I had to use crutches to move on my own.

Scott Benner 4:22
So hold on one sec. I'm gonna slow you down. Yeah, I want to make sure I'm understanding. So also you did a great job of telling me about yourself. You never said your name. Do you want to tell people where do you want me? Oh, yeah.

Emilio 4:31
My name is Emilio. Sure.

Scott Benner 4:36
Okay, so, Amelia, we have a I want to make sure that I'm understanding everything that's happening. So two years old. You're diagnosed in Ecuador with autoimmune hepatitis, which, yeah, I have in front of me, a chronic autoimmune disease of the liver that occurs when the body's immune system attacks liver cells, causing the liver to be inflamed. Common initial symptoms include fatigue muscle aches are signs of acute liver for inflammation that include fever, jaundice, right upper quadrant abdominal pain is that now I know you were to then but that's a correct description of what? Yeah,

Emilio 5:09
that's sick. We're description and you may add there that you get yellow. You literally get colored yellow, your eyes are bright yellow. And you can tell it from that. You have seats. I used to do that with other people. It's a thing of mine. But yeah,

Scott Benner 5:28
here's the craziest part that this blurb here says that people usually get it between 40 and 50 years old.

Emilio 5:35
Yeah. And it's it's very common in women and not so common for men, but do happen. It does happen.

Scott Benner 5:42
Okay, yeah. And then growing up between your diagnosis with that and when you're diagnosed with type one at 13. What What's your life like with autoimmune hepatitis?

Emilio 5:54
was very hard because as I told you, it was like moving hospital to hospital. I never had like a normal life until I was like 1617, I think. Yeah, but it was always been the hospital, the hospital and because of the of the 3d and for the for the ultimate hepatitis, I couldn't see a lot of people. Because I didn't have my I didn't have an in a very hard immune system. So I was very delicate.

Scott Benner 6:21
Did you spend long chunks of time in the hospital? Or were you just in and out a lot?

Emilio 6:27
In and out a lot. Sometimes I used to spend a couple of months back and forth

Scott Benner 6:34
getting treatment or because you had a flare up? That was debilitating you getting threatened? Okay, what were the treatments? Like?

Emilio 6:44
Basically, they bump you up with cortisone. Like, ah, holder of cortisone to the vein. And,

and yeah,

Scott Benner 6:56
and that kind of drives it away. But it also has other impacts on you. Right, do you?

Emilio 7:00
Yeah, the the other impacts are very hard, very hard to because at that time, at the time being we did not expect the courtesan to do bad stuff to me. But it, it has done it through the time. So now I have a couple of things in my body for some people that have my vision is very blurry because of that. Also, a cortisone in the long term cause is organ failure. So But what basically, we thought that it was a the causes for the cause for Taiwan was the cortisol.

Scott Benner 7:44
Oh, really? Like the Yeah, the cortisone could have could have started the type one diabetes. Yeah. Yeah, that's interesting. When you're diagnosed with type one, you're back in Ecuador at that point.

Emilio 8:00
Yes, I was here. When six months after I was diagnosed, we went back to Argentina because we we always loved the Met the medics or the doctors there. So we went back there and they help a lot, but a lot. Also, I had when I came back from the coma because I was in a one week coma after I was diagnosed. I had neuropathy. I was I was falling. Yeah. So the thing that neuropathy does to your bodies is hard. It's hard to explain because your muscle memory doesn't work as well as if it's you have a healthy leg or a healthy body part that being is being affected by the neuropathy. So when they tested for these things, a hearing Nikola the best his current through your nerves. So my leg decided to remember the electric shocks at 3am for five months. So the pain was awful. So I was dealing with Taiwan, I was dealing with a neuropathy, so it was a very hard six months when I started.

But we went through it.

Scott Benner 9:15
So you get these like, like constant shocking pains that are Yeah, that go on for hours.

Emilio 9:22
Exactly. Yeah, they're like electric trucks. Wow.

Scott Benner 9:25
And painful to what degree like from a scale of one to 10 Where would you

Emilio 9:31
and I need I will think

Scott Benner 9:33
wow. And yeah, you're young boy at that point then too. Yeah,

Emilio 9:37
I was 1414 13 at the time. Yeah.

Scott Benner 9:43
Geez, what's I'm trying to figure out where to jump to but where does What does diabetes care? Tell me again? How old are you now? Now I'm making your 18 now, okay. Yeah. So, so how did your diabetes care start but what did they give you too? Who? Like how does it work in Ecuador,

Emilio 10:02
it works pretty pretty much the same way it does in the US and the whole world. But we are very analog here. So we use the blood blood checker meters and and we use Spence or, or fringes but because I have other friends that are very, very into the subject, they have introduced me into technology of of these and it's amazing now I am with the I am checking my glucose with the FreeStyle Libre. I don't know if you know knowing that device. I know it. Yeah. Yeah. And I have I had used the Omnipod. Also.

Scott Benner 10:45
Really? Yeah. How did I excel that I

Emilio 10:49
love it? But the thing with the Omnipod is that the the insulin reservoir is very low for me. Because I use a lot of insulin because of the cortisone because, and and yeah, it just works one or two days for me

Scott Benner 11:05
how it's used in about 200 units in a couple of days. Yeah, you're on the cortisone still to this day.

Emilio 11:12
Yes. We tried we try we did a lot of with a lot of other bills, but they don't work.

Scott Benner 11:18
Okay, doesn't work. Well, what's your diet? Like? What do you eat in the course of a normal day? A pretty

Emilio 11:24
much normal. Now I'm very control in my in the hepatitis thing. But I got COVID At the start of the year. And my, um, my hepatitis went crazy, but now it's controlled. But I never had like, a special diet or like, change. changed my whole life through it. Gotcha. It's

Scott Benner 11:51
so what so what's, um, tell me what average meal looks like in Ecuador just so people can understand?

Emilio 11:56
Well, basically, it's like rice. And pretty much every plate has rice, and depends on what else you want. Because a you have a sacred boil things like that. It's like a chicken stew. You serve with rice and plantains. Yeah. And that the chips. It's pretty much normal.

Scott Benner 12:22
It's a common meal. You know, I don't want to get too far off topic here. But yeah, I the Galapagos Islands are like my. That's my dream vacation. Like that's

Emilio 12:32
Oh, it's amazing. It's amazing. Yeah, you've been? Yeah, I have been there. I've been there.

Scott Benner 12:40
I don't know if I'm making more of it in my head than I think but it it's the one place I'd like to go that I've no,

Emilio 12:45
no, it's it's very beautiful. It's like this sort. It's pretty much that time doesn't doesn't pastor Yeah, you can spend hours in sovereign the time won't pass. It's very rare. I think. I don't know if it's my my thing. But when I was there, I think was doing soverom The time that we're past. When? Yeah,

Scott Benner 13:09
how often do you see a doctor for the type one? For the type one?

Emilio 13:13
I'm seeing a doctor every one month? Once a month? Once a month? Yeah, I'm pretty much control on it. And if I have a problem, I usually tax tax him and ask questions, but at the time now I'm very, very controlled.

Scott Benner 13:33
What are they measuring success with? Are they using an E one C or?

Emilio 13:37
Yeah, we usually in a onesie we you seen the? The glucose? Like the the amount of of test in the month?

Scott Benner 13:48
Yeah. And look at to look at that you looked at do you like how do you think of it on yourself? Are you trying to stay within a range? Do you?

Emilio 13:56
Yeah, I usually I usually stay within the range. My range is between 80 and 160. And it goes through that I have good days I have also have a Facebook. Yeah, pretty much the time it says

Scott Benner 14:11
how how active you are, are you able to be with the hepatitis like exercise a

Emilio 14:17
very, very active by the way. They they're they have recommended me and they always do that I need to do more exercise than I usually do. And they push me through it also because of the of the mixture between the cortisone and the insulin. I need to do more because my body tends to reject insulin. Okay. Yeah. For example, I am using also transceiver I don't know if you know more than insulin. I do like a long until RT one. I use 68 units of it every day. So I use a lot. How much

Scott Benner 14:56
do you weigh? A 150 Wow. Yeah, so that's a lot for the cortisol, then yeah, okay.

Emilio 15:04
Exactly. Yeah. So also they didn't have a rapid I use a half a cartridge every three weeks now, every three days, sorry, every three days. So, yeah, a lot of us suck a lot of

Scott Benner 15:20
how do I have a couple of questions, I guess how did all of this impact you going to school? Are you able to still go to school when you're young?

Emilio 15:27
No. Oh, my, my first years we ultimately hepatitis on the diabetes. I usually went, like 90 days of a year. I will think so. So I was not very, very active in school. I had lessons through a computer. Also, because I was not in the country. And making the trips was very, very difficult with paper. So we did it with a computer.

Scott Benner 16:01
Okay, yeah. So you did a lot of online stuff back then. Yeah, exactly. Yeah. So have you graduated?

Emilio 16:08
Yeah, I'm graduated. And I'm going to start college there next year.

Scott Benner 16:11
That's what I was wondering what what are you thinking of going to college for?

Emilio 16:15
A business management? I think

Scott Benner 16:21
it's hard to know when you're 18, isn't it? Yeah. I think you just pick something that you're good at that you enjoy. And then you kind of hope that during college, you can configure Yeah,

Emilio 16:34
you're gonna you're gonna like, like, figure out if you can do it for the long run. Yeah.

Scott Benner 16:38
Or hopefully, you'll learn something that will give you some interest that you can follow along. How long? Was it a very expensive process for your parents the treatments over time?

Emilio 16:49
Yes. And no. The things we did in Argentina, they were out of pocket for my parents. But here as the insurance covers life in the 40% 50% of it, but it's it's not so great, because if we say leave it, the insurance doesn't cover it. They only bought the insurance doesn't cover it. Because it's not like Frasier here and Nick weather and getting the stuff here. It's also hard. What I do is like, I had a friend in Colombia, so in Colombia, they buy it from from a pharmacy and they send it through through plane, then someone needs to pick it up and then drive it here. Yeah, it's a process. With the Omnipod. I found a website I could buy them from because my insurance won't allow me to use it. I don't know why. So yeah, I need someone from the US to buy it and then send and send an airplane ticket.

Scott Benner 17:54
It's a lot. Yeah, yeah. When you were going to Argentina as a child, how did you go? Did you drive or fly? Or what was that like?

Emilio 18:01
Well, we will fly. Yeah,

Scott Benner 18:02
I'm just gonna say it's a really I mean, it would be an amazing trip. Yeah.

Emilio 18:09
It's eight hours, six hours.

Scott Benner 18:12
If I recall. Wow. What was one of your parents with you all the time when you were younger?

Emilio 18:20
Yeah, my mom used to be there a lot. But when we went the first time we went in Argentina when I was like, really bad with autoimmune hepatitis. My dad had a problem with the with the ID so he couldn't travel. So I was with a mom and the doctor and then the day we arrived, I had six months come, I went into the entrance, six months.

Scott Benner 18:46
Was that was that something that happened naturally? Or did they put you into a medical coma?

Emilio 18:52
It was a mixture because my body was like shutting down. They were trying to help me so they induced me into it,

Scott Benner 19:02
but it was a mixture of it. Wow. Six months?

Emilio 19:05
Yeah. My parents thought I was at so I was like, brain dead? I would think but yeah.

Scott Benner 19:12
Yeah, I was gonna ask you that that was actually going to be my next question. Which is have you since all this has happened now that you're older Have you ever spoken to your parents about all this and and heard their side of what was happening?

Emilio 19:26
We we have done it through the years we have speak of it because it's like my lifestyle. Yeah. But it's it's like a normal thing. Now. We don't view it as a different thing. Not a big deal. Yeah, not a big deal bug. My cousin's, for example, they do think that I was going to die. So now that I'm 18, and our body I'm getting out and living my life. They always tell me like, take care of it. We save you once. We don't want to save you twice. So yeah,

Scott Benner 20:01
It's enough for you. We're done. We're done helping you, right?

Emilio 20:03
Yeah, exactly.

Scott Benner 20:05
It's amazing. How do you Yeah. You said you found the podcast through a friend? How Yeah, how does that all happen?

Emilio 20:13
Because I was like experimenting with, with all this technology. I found a friend of mine who had who his son has, has become diabetic. And he he had the insurance to buy all the stuff. So when the first day he had like, well, the second week, I think that he has, that is another virus, they started getting the Dexcom and the Omnipod. Okay, so

Scott Benner 20:44
these are friends in Ecuador or friends in another,

Emilio 20:47
you know, in here and there where they do travel a lot, so they have the capability to buy it from there. Also, the insurance gave it to them, so it's much easier for them.

Scott Benner 20:59
Okay, so some people's insurance will cover it and some people's won't. Exactly. Okay. All right. What will happen? Will your your parents be able to continue to help you while you're in college? And what do you think about when you're out?

Emilio 21:15
Yeah, they are Joe helping me. They don't think they're gonna stop. Because I did sign being now I am working, but I don't have like, like a really hard job. So it's like a part time. Yeah. So yeah, they're they're still helping me. And they would help me until I was 40. So I don't think that's a problem. You

Scott Benner 21:39
don't think they're gonna bail on you?

Emilio 21:41
No, no, yeah. They're,

Scott Benner 21:45
I mean, like, I have to tell you this is no, no, I'm not making this up just because you're on. But for the last, you know, in the last year, or so, I've been wondering why I'm getting more downloads in Ecuador than I usually do. And I guess I'm figuring out that it might be you. So

Emilio 22:04
it might be me or my friend or a couple of friends that are diabetics that we will listen to the podcast because it helpful, it's helpful because of the, the juice box thing. Because if I don't know the correct amount of insulin, okay, I'm gonna add for use books. And that has been very helpful. Very helpful.

Scott Benner 22:27
Really, you might not understand the gravity of what I'm saying to you, but that I thought of something like 10 years ago in a gymnasium while my daughter was playing basketball, and then I eventually said out loud into a microphone that somehow reached you in Ecuador is mind blowing to me. And that you said, Yeah, it's amazing. Oh, man, it just gives me chills when you say it. Like, it's just it's absolutely crazy. Like, you didn't have diabetes, when I figured that out. You know what I mean? Like it's, yeah. And we are we live about as far away from each other as you know, somebody could. And it's just it's really some I know, you grew up with the Internet. Like, it's never not been there for you. Yeah, but I remember it not existing. And so it's really, it's an awesome thing. Yeah, that's

Emilio 23:15
a good thing for me, because I was like my escape in the hospital rooms. And so all the threatening was like watching videos for YouTube or internet or praying my phone. So it was, it was so it has always been a part of me.

Scott Benner 23:30
Yeah, that's excellent. Do you have any idea where your friend who told you about the show found out about it?

Emilio 23:37
A, I think through US Soccer. Because he also does a he also has freedom for his son in the US. And I think the doctor recommended to it.

Scott Benner 23:51
Okay, so when he was in the US visiting a doctor, the doctor told them about it. Yeah, I think so. Yeah. So well, that's really crazy. Okay. Well, what you said you think things are going pretty well for your for your care, like, what's your agency now

if you've been thinking about getting an insulin pump, but don't want all that tubing, you should check out the Omni pod dash, it's tubeless go to Omni pod.com forward slash juicebox. To learn more. The Omni pod dash is a number of things. You can use it let me tell you what you can do with it. Showering, swimming, that's all good to go. Exercise, weightlifting running around all good to go. You don't have to take it off for those things. Those tubes pumps often have to come off in scenarios like that leaving you without insulin, not good. Omni pod doesn't have tubes, so you can constantly wear it without interruption. On top of all this, you know you might be thinking alright, Scott, it sounds good, but How do I know for sure before I get started? Well, a free 30 day trial is a good, good place to begin. So you can try the insulin pump that my daughter uses without any risk@omnipod.com forward slash juice box. If you like it, it's simple to keep going. And if you don't want it anymore, you get to the end of the 30 days, you're like, not for me, no problem. Nobody's gonna bother you. That's the end of that. Nice and easy up to you. That's how long the pod wants it to be. For full safety risk information and free trial terms and conditions. You can also visit omnipod.com forward slash juice box Dexcom G six. What is it? Why do you want it? Let's dig in. The Dexcom G six is a continuous glucose monitor, monitor where there goes the axon. It's a continuous glucose monitor. There you go. It's a small device that you where it reports your blood sugars back to your phone or to a receiver. When I say phone, I mean Android or iPhone. Not the one with the rotary thing like your grandma had that. That doesn't work that way. But if you have an Apple iPhone or an Android product, it is very likely that the Dexcom G six will work for you. If it doesn't, it's okay. Use the receiver. Why would I do this? Or are you more specifically? Oh, I'll tell you the speed and direction and number of the blood sugar for the user. Just like this, I'm picking up my phone. You couldn't hear it because I'm stealthy. I've swiped up. And I've touched an app Arden's blood sugar is 71. So she's also diagonal down, which means her blood sugar is falling a little bit. She's in the shower, we've already taken care of it. How did we take care of it? Well, 10 minutes ago, she was 91 Diagonal down. And I said, Hey, get in the shower, we should probably do something about this. And we did that 70 one's going to stop. I'll watch it happen here on my phone. comfort and convenience, safety and security, health. These are the things that we personally get from the Dexcom G six. There are results, of course, and yours may vary. But if you'd like to find out more, get started today, or see if you're eligible for a free 10 day trial. Go to dexcom.com forward slash juice box. There are links in the show notes of your podcast player. And links at juicebox podcast.com. If you can't remember dexcom.com forward slash juice box and who could forget Omni pod.com forward slash juice box. So from the beginning when I said check out T one D exchange.org. Forward slash juicebox. Take the survey. I could do these links in my sleep to understand me. You could keep me awake for 72 hours and then say Scott, how do I find out about the Dexcom and I'd say dexcom.com forward slash juicebox. Right before I passed out from being so tired. Let's get back to Emilio.

Emilio 28:11
My aliens now, I don't know that my doctors know that. I usually don't look at it because I will get crazy of of the numbers.

Scott Benner 28:21
Okay. Is that something your parents pay attention to? And they don't

Emilio 28:25
know. I have to tell them evenly. They're even that dumb. Check my numbers. Let me take care of it on my own way. Because I don't want them to be preoccupied with a lot.

Scott Benner 28:39
You're worried that they'll they'll get consumed with helping you.

Emilio 28:44
Yeah, they had done it. So I don't want them to go through that again.

Scott Benner 28:49
Yeah. Are you trying to protect them? Yeah, yeah. Do you think it was hard on them? Oh, yeah.

Emilio 28:57
His son. Maybe that is some good died two times.

Scott Benner 29:04
Okay, low blood sugar. Yeah.

Emilio 29:08
Because, like, can you

Scott Benner 29:11
repeat the question I can send you did you almost pass from low blood sugars? Or because of the hepatitis? You just think your parents have been through enough in gym?

Emilio 29:21
Yes. And yes. Because of the hepatitis. Like they come on. I think the doctors you're told my parents I was I was gonna die. I was gonna die. He's not gonna make

Scott Benner 29:31
so they had all through that one time already.

Emilio 29:34
Yeah. And then the next time and the diabetes thing. I was very bad. Bear bed.

Scott Benner 29:42
Yeah. When when you were at diagnosis. Yeah, yeah. Well, it's like, oh, Amelia, this is crazy. I have to take this call. Hold on one second. I really apologize. I don't know where doesn't usually happen. I'm going to take my headphones off. We're not gonna be able to hear me.

Emilio 29:56
Nowhere to work. Hello.

Scott Benner 30:01
Okay, so sorry about that everybody. I got a phone call I had to take. And Emilio I apologize. What were we talking about when that happened? Because I got I got spazzed out when I saw my phone, right?

Emilio 30:14
We were talking about a thing. Like taking a taking a say with

Scott Benner 30:20
my parents. Oh, yeah, right. Okay, so you felt like they had been through enough so you're doing it. But now you also don't want to know, tell me more about not wanting to know you're a one say

Emilio 30:30
it's not wanting to know my IOC it's because they the calculus for that thing. A, I don't usually see the exams I just given to the to the doctor or my or their results just get sent to the doctor. So she checks. She checks if I'm okay.

Scott Benner 30:50
And just says you're okay.

Emilio 30:52
Yeah, basically. So I don't I don't get my mind into numbers. Because for one thing, I don't like numbers, and also get very frustrated if I'm not in my range.

Scott Benner 31:03
So if you Okay, so if you were to hear that the number wasn't what you wanted, it would be frustrating to you, it

Emilio 31:09
will be frustrating. And I will like, shut down and stop everything I'm making the fix itself. I say I'm just taking it easy with it.

Scott Benner 31:18
So you just think of it as keeping things between you do your best day to day to keep yourself in that range that you mentioned earlier. Yeah, exactly. Do you use any of the ideas from the podcast in your management?

Emilio 31:32
Yeah, so as I mentioned, you use the useful thing.

Scott Benner 31:36
A Pre-Bolus?

Emilio 31:39
Yeah, I do. Pre-Bolus Yeah, that's one thing. My mornings were awful. Because before that, because as I just wake up, my body reacts differently. My insulin sensitivity in the morning is even higher than in during the day. So for my morning, it's one unit for every three grams of carbohydrates.

That's it.

And if I inject a for the meal, it doesn't work. So I need to Pre-Bolus and add 10 more units or eight more units. depends on the amount of food I ate the day before. Okay. But yeah,

Scott Benner 32:17
so in the morning, your insulin ratio could be even stronger than one to three, it could be almost one to two or something like,

Emilio 32:24
oh, it's one to three and during the day, it's one to seven,

Scott Benner 32:28
one to seven. That is a big difference. Okay. Your Basal insulin, do you ever look at your graphs overnight to see if you're stable overnight? And, and, and other times when you don't have food to see where your Basal is? Could be at? Yeah.

Emilio 32:44
So if I have food at night, it tends to go high, and then drops on the state level. But if I don't eat anything, it goes straight. It's a straight AD AD. Oh, wow. That's it. Yeah. It doesn't move from there.

Scott Benner 33:04
I mean, you're doing a really good job because you're using me you're having to use a lot of insulin because of the cortisone. So that's, um, it's it's it's difficult, you know, like, do you ever have a time where you're not on the cortisone?

Emilio 33:18
A,

no have never been out of it. We have, like, tried to make the transition from it. But it hasn't, like work out.

Scott Benner 33:28
So it's, it's an everyday situation. Yeah, you get it by injection or by a pill.

Emilio 33:33
No, I take pills. five milligrams

every, like once a day, once a day here every night

Scott Benner 33:41
is Is there anyone else in your family with autoimmune issues?

Emilio 33:46
A my grandma, from my father. She has lupus. And we think it all came came from her. Okay, so it comes down because from my mother's side, I don't have anything and from my dad's side, my grandfather doesn't have anything. It's just my grandma.

Scott Benner 34:06
Okay. Do you have any other autoimmune issues besides the hepatitis and the diabetes?

Emilio 34:13
A No, no. Okay. No.

Scott Benner 34:16
Did they test you for celiac disease for thyroid issues, stuff like that?

Emilio 34:23
Yeah, they always do that. And it always comes right. I don't have anything of that. Excellent. Because I'm very paranoid of it. So I always like I'm checking to see versing well, because I have like the thing in my head that tells you you're gonna die, you're gonna die. So I always check

Scott Benner 34:40
is that is that really something do you feel like that frequently?

Emilio 34:46
Not frequently, but if something like I feel I feel like steak or something like that, I think should I? I may have even worse thing that I have now. So,

Scott Benner 34:58
so yeah, so if your arm starts to hurt Are you you're pretty sure it's gonna fall off that kind of stuff.

Emilio 35:02
Yeah, so I'm very paranoid of it.

Scott Benner 35:06
You play any sports? Yeah, I do

Emilio 35:09
was like normal sports. I don't do number sports, normal sports. The only normal sport I do is swimming. Okay. And then the other is i a scuba diving,

also. Oh, that's

Scott Benner 35:24
cool. Yeah. Yeah. Scuba with? Do you do it in in groups? Or do you do it?

Emilio 35:30
Yeah. In groups you can you can dive alone.

Scott Benner 35:34
Where do you learn how to do that? How old were you when you learn how to scuba dive?

Emilio 35:37
A it was around when I was 1112.

Scott Benner 35:41
Okay. So before diabetes, you knew how to do before diabetes?

Emilio 35:45
Yeah. And he was very helpful. Because, as I told you before, I didn't have my leg for like six months when I was in recovery. So I couldn't walk, but I could swim. And I could die. So that was a thing that, like, pushed me to go further. Was like, dive in. Oh,

that's interesting. Helpful. Yeah.

Scott Benner 36:07
So you could so part of your therapy or just to keep your mind, right. You would swim when you couldn't actually walk? So were you in a wheelchair for a while?

Emilio 36:15
Yeah. I was going through school in a wheelchair, using crutches to go anywhere.

Scott Benner 36:22
Do you have brothers or sisters? Yeah,

Emilio 36:24
I have brothers and sisters. Okay. Big Family. Ah, no. It's me. My sister and my brother are three three of it. Yeah.

Scott Benner 36:33
Are you the youngest oldest in the middle? Yeah, I'm

Emilio 36:35
the youngest one.

Scott Benner 36:36
Who the youngest? Are they much older than you? Are they just a little older?

Emilio 36:40
I mean, older. My brother is 25 and my sister's 21. I think,

Scott Benner 36:44
okay. Are they at school or on their own? Are they at home?

Emilio 36:47
Yeah, they are on their own. Okay.

Scott Benner 36:52
What about let's see what else you dating? No, I'm not. It's a good idea. Yeah,

Unknown Speaker 36:58
it's better. Yeah.

Scott Benner 36:59
It's a lot of trouble sometimes. Exactly. Hold on a second. Give me one second.

Yeah, I know there's times I wish maybe I wasn't dating. Like the person I decided to date is bothering me right now. For instance, they know I'm talking to you still are asking me questions that have nothing to do with

Emilio 37:27
Yeah, also also, because now I like fixing my life in a sort of way. Because of the whole, like, current quarantine thing and all of that. And like starting my life again. Yeah. So right now I'm like, being amazing. And having my life and being next to someone. It's, it's not not a thing in a plant.

Scott Benner 37:47
Hey, I want to ask you a little bit about having COVID. So how long ago did that happen to you?

Emilio 37:53
That happened I think in February of this year.

Scott Benner 37:59
Okay, recently.

Emilio 38:01
Yeah, recently. And I, I gotta, I gotta ECU because I was symptomatic.

Scott Benner 38:11
Okay, so you are positive and didn't have symptoms.

Emilio 38:14
Yeah, but the sure thing was very bad, baby. But that was the that was the thing that made me realize, Oh, I'm maybe had good. Oh, okay. And then you got because then I got tested, and we all came back positive. Oh, the whole family. The whole family. Me and my father and my mother, because my brothers doesn't live here anymore.

Scott Benner 38:36
Were there vaccines available to you? Or no? Yeah, the word yes. Did you take

Emilio 38:42
a word? And because I have like a little card that says that I'm disabled. I had the Pfizer display servicing device or vaccine.

Scott Benner 38:51
Yeah. So you Okay, so you had the vaccine, but then caught COVID But we're asymptomatic.

Emilio 38:58
No, I covered before the vaccine. Oh, before

Scott Benner 39:02
the vaccine. Okay. So now you have Yeah, well, now you've got Yeah, yeah.

Emilio 39:07
Yeah. We got the vaccines, I think two months later than the US. Oh,

I see. All right. So it was like the whole time.

But having COVID We diabetes on my hepatitis was, was hard. Because like my ratio went from having one to seven to all the day to having one to five. I needed to Pre-Bolus like 30 minutes before.

Wow. Wow, it's sad. Really. The sensitivity of it was

off. So yeah, how long is also good? I'm sorry. I also needed to do a lot of exercise.

Scott Benner 39:48
Just to help bring your blood sugar down. Exactly. Yeah. How long did the COVID impact you for how many days until now? Is it been it's been all these months? It's been giving you trouble. Yeah. Oh, okay.

Emilio 40:06
With hepatitis because diabetes control now.

Scott Benner 40:11
You will that was gonna be my question like, how scary was it with the hepatitis to get COVID

Emilio 40:17
awful because we thought that I was I was gonna die. But he was the exact same opposite because my parents got bad and I was the one that was helping them. So I was 17 at the time. And I was like, driving the car from working, doing this doing the work. So for my dad like getting out and going out. We COVID trying to not get in touch in touch with people, but we need it to work. So that was the thing.

Scott Benner 40:49
How old your parents

Emilio 40:51
my dad is 54 and the mom is 47 I

Scott Benner 40:57
think it hit them very hard.

Emilio 41:01
My dad, my dad needed to use oxygen. And because I had like a like an aquarium hobby. I do have oxygen bottles here in the house. And I feel them up because I knew something in my head told me get the action in swaddle field if anything happens. So that was very helpful.

Scott Benner 41:23
You have what you have oxygen bottles because you have Did you say you have an aquarium hobby? Yeah,

Emilio 41:29
I have also crimes. Okay.

Scott Benner 41:31
And so you you gathered up extra oxygen in the house thinking that that might be an issue around COVID. Yeah, exactly. Is that's a pretty smart

Emilio 41:41
I that my dad use. I had three tanks and my dad uses in three days.

Scott Benner 41:46
No kidding. Yeah, he uses it. Are they recovered now?

Emilio 41:51
Yeah, they recovered now. They don't have they don't have backlashes or anything like that. I'm the only one who ever

Scott Benner 41:57
okay. And so it's stuck to you longer, but just what was your biggest problem? The impact that had on your blood sugar?

Emilio 42:06
Well, yeah,

the biggest problem was that because I, my my glucose was between 302 100 and they wouldn't go down.

Scott Benner 42:15
Oh my god. Wouldn't it though? For how long?

Emilio 42:19
For a month?

Scott Benner 42:21
No kidding. That's terrible.

Emilio 42:23
Yeah, I was awful. And I was feeling and I was feeling bad because of COVID. And because of having high blood sugar.

Scott Benner 42:30
Yeah. Well, yeah. Tell me about that. Like when you're that high for that long. It. The impacts on you are a lot, right.

Emilio 42:39
Yeah. So you don't want to get off your bed you are without energy to do anything and you cannot eat anything because it will go higher. And you cannot smell anything because of COVID

it was a whole flurry of things.

Scott Benner 42:55
And you had to but at the same time you were taking care of your parents. Yeah. Were your brothers and sisters home or was it just the three of you at that point?

Emilio 43:03
No. And my brother a my brother's girlfriend, mom also was bad. So my mom between COVID I'm feeling bad was also helping her.

Scott Benner 43:16
Wow, that's terrible. Parents. Did any of you ever end up in the hospital?

Emilio 43:22
My dad was about to go to it. But we call the doctors and they told us if he goes to the hospitals, he's gonna die. He's not gonna He's not gonna survive. He goes to the hospital. Wow. So it's better. It's better to keep it in the house. And keep the watch.

Scott Benner 43:37
You guys got really lucky, huh? Yeah, sounds like you. You had a big part of helping everybody get better to where you? You were you cooking and doing everything like? Yes,

Emilio 43:47
I was. I was cooking and all stuff. in quarantine. I like improve my core math skills. Miko but yeah, when I got COVID Also, I did that because I wanted to test what flavors could I like smell or feel? I gotcha. As a spoiler. No, no one. Neither of them.

Scott Benner 44:10
When you lose your sense of smell. Can you eat food that you don't like?

Emilio 44:15
I used to chew

Scott Benner 44:16
on garlic. Hoping to taste something.

Emilio 44:19
Hoping to say something. Yeah. Also no onions. And I didn't vote anything.

Scott Benner 44:24
No, that's crazy. Yeah, that's really something the doctors come to the house to see you or was it all over the phone?

Emilio 44:32
It was all over the phone.

Because we were we were we were in lockdown here. Yeah. And we had a curfew that started. I think at the time we had a curfew that started at 3pm.

Scott Benner 44:45
Okay. How How was COVID in Ecuador? Is it is was it a real big problem or did just get you guys or?

Emilio 44:54
Yeah, it was a really big problem because people used to body bodies. dead bodies appear on the streets. No one knows why the people like started to feel bad on streets. Well, they were they were piling up. And yeah, it was it was very awful scary. Yeah, very scary here.

Scott Benner 45:15
You've been through a lot in a short amount of time. Yeah. Do you ever think about that, that you've probably gone through more than most people will in their whole life? And you did it?

Emilio 45:25
Yes. And I use it. I use it as a push for my life like to keep going. Like, if I have fought this hard, why would I stop now?

Scott Benner 45:37
Yeah, that makes sense. Like, why am I here? I don't know if you've ever heard the phrase In for a penny in for a pound. But it's the idea of you went this far. You might as well not give up. Right. So yeah, that's that's really something, do you? I guess you don't remember yourself prior to any of this. Like, it's a very, you have a great way about you. And, and a great, you know, there's just a great feeling coming from you. So do you have any idea why you feel that way? Like why, like, why aren't you depressed and sitting in your room? Do you know what I mean? Like, why did you choose this path or

Unknown Speaker 46:12
a

Emilio 46:14
I had been depressed. When I was diagnosed, I did have depression was for like a month. But it passed me as I went through it. But like my mind works in a way that I usually see the better in things that are good. And things. I'm not that bad. Yeah.

Scott Benner 46:41
Your English is amazing. Well, thanks. Have you ever been to America? Yeah, I

Emilio 46:46
have been there. Okay. Sounds you?

Scott Benner 46:49
I mean, we've been talking for 40 minutes. And I've only said one thing once that you said, Can you repeat that? And I've I've not like, I haven't changed how I speak for you? Or do you? Not? I mean, like, I haven't taken words out of my vocabulary or anything like that. Where do you learn English?

Emilio 47:05
From school? My whole like, room, I have a Google Home and it's everything in English. So I push myself to speak English and is driving English and, and being English.

Scott Benner 47:18
What's the what's the language of Ecuador? It's what do you Yeah, I always dream about taking the pro tip episodes of the podcast and and translate into Spanish, but I don't know. I don't know how to do that. People tell me that there are so many different kinds of variations of the language that

Emilio 47:36
yeah, no, that's that's a particular thing here. Because we have like fried regions, right. So it's like the cost ghost thing. And then we have the highlands. And then we have the the jungle like the Amazonia. And every single, every single song has a different language has a different way speaking. Like Daniels, they speak in a very different way. They speak like singing and Queen canas. It's another part of islands they also speak very differently. So it's a mixture of

Scott Benner 48:11
is the voice is it so different that you would like when you go to Colombia or to Argentina? Do you have trouble talking to people in Spanish?

Emilio 48:19
Yes. And in Argentina, there are like, words we use in our vocabulary here near brother. We are very, very bad words in Argentina. So yeah, it's it's it's a shock. It's a culture shock. But it's amazing. Like knowing how they talk.

Scott Benner 48:38
Tell me a word. Use it. Use the word in English. But tell me a word you would use in Ecuador. That would be a bad word in Argentina.

Emilio 48:47
Like taking the boss here, it would mean like Cohoes Yeah, like, but in order to trust that we're not nagging Tina. Yeah, that will translate to a very bad thing with the boss. Okay. Yeah,

Scott Benner 49:05
let's all just wonder I don't want you to tell me well just leave it up in the air like that. Yeah, exactly. That's funny. What about friends? Like you're not dating? Do you have do you have close friends?

Emilio 49:15
Yeah, a close friend group. I have recently made friends because I didn't have a social life. I started my social life when I was 17. Yeah, I didn't have friends through all of this. So I recently have friends.

Scott Benner 49:32
Your vote? Do you find yourself feeling more mature than your other friends?

Emilio 49:36
Yes, I love a lot of it. Because I'm like the father of the group of my friends. I usually take care of them. I usually drive them I usually like give them advisors and help them work stuff.

Scott Benner 49:49
Yeah, you've been through a lot. I mean, in a way that that makes me feel like you're going to be very successful as an adult. I don't I can't imagine what else could happen to you that you wouldn't be able to deal with You know?

Emilio 50:00
Yeah, now I'm prepared for pretty much everything. Yeah,

Scott Benner 50:04
no kidding. I think you're, I think you're 100%. Right? Yeah. Is college going to be online? Or is it or is it something you're going to?

Emilio 50:15
I want to go with, because they want to choose. They had a nice campus and they had a pool and they had a gym and had a lot of stuff. But it's like, 10 minutes from my house. So it's so far.

Scott Benner 50:27
So you'll live at home, but go to college? Yeah. Oh, that's,

Emilio 50:30
that's sad path. That's the way it works here.

Scott Benner 50:32
Nobody lives at college there. Yeah, gotcha. Okay. My son just went back to school. And I miss him already. So it would be nice if he had to come home every day. I would like that.

Emilio 50:44
Yeah, that's that's the same. My parents appreciate a lot also.

Scott Benner 50:47
Yeah, no, I imagine. So. Do you imagine what as an adult that you'll live in Ecuador?

Emilio 50:55
No, I want to I want to get out of

Scott Benner 50:59
okay, where do you want to go?

Emilio 51:01
I want to go to Australia or Indonesia.

Scott Benner 51:05
Oh, I have. I have listeners in both of those places. So you can definitely keep listening to the podcast if you leave.

Emilio 51:12
Yeah, the situation here is it's very bad. Now we are next to Mexico in crimes. Okay. Also in like politics and other stuff. We're very big behind all the other countries.

Scott Benner 51:27
So politically, it's something you'd like to get away from.

Emilio 51:31
Yeah, also the violence here. People get killed in the streets every day. They get robbed them they get farther and it's it's awful.

Scott Benner 51:40
What makes you think about Indonesia?

Emilio 51:44
Because as I told you, I love crimes like like, the ocean. Yeah. I love it. So being like next to the ocean being like next to the, to the raves. It will be my dream life.

Scott Benner 51:56
Yeah. I just I'm thinking of a person that I just spoke to recently that lives there who listens? Who listens to the podcast? Man, it'd be two of you. You could find each other. Would you be able to carry on your medical care anywhere? Do you think?

Emilio 52:11
I think so. Okay, I think so. I don't know. I don't know how they how the insurance things work in other countries, because I hadn't never liked this. But I think I will Korea. And so.

Scott Benner 52:21
So for the for the hepatitis part. It's just the pill that you have to keep up with. Yeah, it's just a pill. And are you? I mean, extra COVID. Aside, are you extra careful about trying not to get sick, or is that?

Emilio 52:38
No, I don't usually do that. I used to do that. But now we went through a pandemic. So I don't I don't think we need to be debt now. So I was just keep going on

Scott Benner 52:51
start feeling like if you can make it through this then everything else. Yeah, pretty easy. Exactly. Do you wear a mask when you go outside?

Emilio 52:57
Yeah, I do wear a mask. But for example, if I'm with my friends, I don't wear a mask. Because we're all vaccinated.

Scott Benner 53:04
Oh, you're all vaccinated this point? Well, you have now you have the vaccine. And you have I imagine antibodies from actually having COVID as well.

Emilio 53:13
You're gonna we're gonna have the third dose here like ething instruments.

Scott Benner 53:17
You're gonna do? Yeah, you're gonna do the booster shot. Yeah, I am, too. I'm gonna I'm gonna take it as well. I didn't I didn't get Pfizer I got j&j But I'm gonna I'm gonna take a booster as well. Oh,

Emilio 53:29
I got a friend who got that?

Scott Benner 53:31
Yeah, it was actually. I mean, I mean, I guess I don't know how well it worked other than just how you I haven't had COVID. And, you know, did you did you get any other side effects of it? Or from the shot? No, I didn't have Yeah, I had no problems with the vaccine at all. Wow. Okay. My arm hurt for a couple of hours. But that was like,

Emilio 53:49
Yeah, really? Oh, I have friends who got very bad headaches spamming

Scott Benner 53:54
all those headaches after their vaccine,

Emilio 53:57
headaches migraines, they couldn't sleep the night began day one.

Scott Benner 54:03
Oh, I feel very grateful. That did not happen. Yeah, actually, my son and my wife had j&j as well, and none of us had an issue with it at all. And Arden had Pfizer. So she Okay, yeah, she did two doses of Pfizer and she didn't have any trouble either. Yeah, no, I

Emilio 54:19
didn't have any trouble with the Pfizer except for the first day. I like a lot of sleepiness. I felt very sleepy. But the next day I didn't feel like

Scott Benner 54:28
I haven't asked you the whole time. But I've been wondering what are the animals? I'm hearing? It's a dog right?

Emilio 54:34
Yeah, it's my dog. sorry. She's

Scott Benner 54:38
sorry. I just I've been dying to know like, at first I heard I heard birds in the beginning. Yeah, I also have birds. What kind?

Emilio 54:46
It's a Australian parrots.

Scott Benner 54:49
Really? Yeah. Collect a kid Amelia.

Emilio 54:54
Yeah, I had a lot of animals here also have clownfish and a reef tank and I used to get planted tank.

Scott Benner 55:00
That's nice. I used to keep saltwater fish when I was younger. It's just amazing. I love it. Yeah, this is very expensive. So eventually stop doing it. Do you actually do? Are you able to get fish from the ocean when you scuba dive?

Emilio 55:15
And technically yes, but legally, no,

Scott Benner 55:19
Amelia, you're telling me that you're not legally allowed to take fish from the ocean and put it in your face? Oh,

Emilio 55:23
yeah, here's your you know, you're not you're not allowed to do that. And in Santa in certain parts of of the coast. I say. Okay, because we have like reserves,

Scott Benner 55:32
and you would never do that. No, I will never course. Okay. Of course. Of course. We're very, very law abiding. Is there anything that we haven't spoken about that you wanted to? I want to make sure we don't miss anything is we're coming up on an hour.

Emilio 55:48
And I think we have talked about all the things you mentioned.

Scott Benner 55:52
Well, I have a question then what made you want to come on the podcast?

Emilio 55:57
I want to I want people to know that. A living here in Ecuador. It's not like living in the jungle. Because people in the US thing, that thing that we live near, we don't live in. We live in a city and we have a lot of things here. And also that having diabetes is in South America. It's not that bad. You can control it. You can live with it.

Scott Benner 56:18
Yeah. Do you have any trouble with the heat with keeping your insulin? Okay, and your pump?

Emilio 56:23
No, I usually don't. Don't put it in the freezer because I spend time in my room or spend time driving. And I pass in in air conditioner all

Scott Benner 56:34
the time. Okay. Oh, yeah. So your home's air conditioned?

Emilio 56:37
Yeah. My all my house everything because here the heat is the worst. Hey, they have failed these like 35 degrees. 38 degrees?

Scott Benner 56:45
Well, a second. I'm gonna figure out what that is in Fahrenheit.

Oh, okay, like 95. And I'm imagining the humidity like the the

Emilio 56:57
100%. Yeah, it's very high all the time. You can

Scott Benner 57:00
go swimming without going to the ocean maybe. So, is it a very indoor kind of existence then? Or do people know?

Emilio 57:09
We go out but usually, like, if I go out with friends, we go out to houses. All right. We didn't go to malls because of the of the whole biasing also. But yeah, and usually we go to the beach and spend time there or we go to the islands like,

Scott Benner 57:30
Yeah, okay. When you're living in a place with violence like that, like how do you protect yourself? Like, are there things you think you can

Emilio 57:39
add to that? You can love guns here are prohibited. Also, the cops are very like, a their own. They can't shoot people. If they do that they go to jail. So they don't do anything, basically.

Scott Benner 57:56
So is the is the violence mostly with knives?

Emilio 58:00
No guns. Oh, so

Scott Benner 58:02
people have guns, but you're not legally allowed to have a gun? Yeah, exactly. I understand. Okay. Much gang violence, or is it?

Emilio 58:10
Yeah, it's like, like are like a cartel thing. I say that. Yeah. It all goes up to Mexico and down. It's like the whole South America drug thing.

Scott Benner 58:22
I say, do your parents do you think your parents will leave when you leave? Or do you think they'll say,

Emilio 58:27
no, they're gonna stay here stay there. They don't have like, an idea of going to live somewhere else.

Scott Benner 58:33
I see. How about your brother and sister.

Emilio 58:37
My sister dream about living in Germany, but because of a situation. She's like, trying to figure out how how did she lives but yeah, my brother and my brother have has lived in Canada because of the of the college. And, but I don't think he has plans to go and live somewhere else. Okay.

Scott Benner 59:02
I think so. He's back in Ecuador now after? I say, Well, it's a big, big change Canada, Ecuador. I mean, just the weather alone.

Emilio 59:12
Yeah, he if it was for him, he will leave the the the thing with college is that he had like, like, I don't remember the exact word.

Scott Benner 59:24
Visa like a student visa. Yeah, like

Emilio 59:27
student visa from here. And part of the agreement is that he if he goes five years again, Allah He needs to work in its work here for 10 years,

Scott Benner 59:38
I think. So if you get to go away to college, you have to come back and take what you learned and and use it in Ecuador.

Emilio 59:43
Yeah, if you'd have worked, the government gives you work and all that stuff.

Scott Benner 59:48
So you'll be like, I'm gonna ask you a question that you might find silly but I want to understand are there any scary snakes or spiders or anything weird there that could kill me?

Emilio 59:58
A yes or no? depends on where you're going. For example if you're going to allow Amazonia obviously to the jungle obviously you're going to find like deadly things. But a couple of Sir Angela has nothing to worry about

Scott Benner 1:00:13
nothing to worry about. Okay, right. Never woken up with a snake in your house or

Emilio 1:00:18
something like that. No, no, I live in a city and

Scott Benner 1:00:21
there's no nothing there. Yeah, and you're very close to the to the shoreline as well. Yeah, hour and a half drive. Do you drive? Do you have a car?

Emilio 1:00:33
Yeah, well, not It's not mine, but it's from my dad when I use it.

Scott Benner 1:00:37
Okay. Do you take any special precautions when you're driving about your diabetes? You check more often?

Emilio 1:00:43
Yeah, usually I Korea juice box or Coca Cola? Coke.

So yeah,

I have I have had times when I'm driving and I I went to 50. And I did sub and during during the Cogan wait. Yeah.

Scott Benner 1:01:00
Do your friends like know how to help you? Have you ever had that comment?

Emilio 1:01:04
Yeah, I have. I have the conversation with them a lot of times because I have tell them if someday I fainted. You need to check my blood sugar this way and this way and this way.

Scott Benner 1:01:13
And they can do it. Oh, that's amazing. Good for you. Yeah, they are trying that array worlds. Right. So you found you found a good group of friends even though you you found them late? Yeah, that's encouraging. That really is great.

Emilio 1:01:26
Yeah, it's very nice to have them. No.

Scott Benner 1:01:29
Oh, Emilio. I I'm really happy that you came on and did this. Um, I? I learned a lot in the last hour. I appreciate you. Thanks. Yeah, no, it really um, I'm serious. It's a I've never heard of anyone who had an autoimmune hepatitis before. When you said that, you know, I just thought, wow, that's that. Some I've done this like 600 times. And somebody said something new to me today. Which shocked? Oh, that's amazing. Yeah, no, really, I'm I was really thrilled that you came on and share that. And just hearing how you took care of your family during COVID. And all that you had to go through as a child and that you're you're doing so well. It's really encouraging. And uplifting. Oh, thanks. Yeah. Do you not think of yourself that way? Or do you?

Emilio 1:02:18
Yeah, I just think of myself that way.

Yeah, but I usually like thinking a lot.

Scott Benner 1:02:23
Yeah, don't think it's too much because you'll end up sound like a jerk if you start saying nice stuff about yourself. But yeah, exactly. You're basically Superman to me today. I'm just Oh, saying it's amazing. I mean, like seriously, like, congratulations on, on on just being that kind of tough and sticking it out and not given up. Really is special.

Emilio 1:02:45
Yeah. That's part of the life. I think. That's part of life.

Scott Benner 1:02:49
Yeah, no, no, trust me. That's that's the whole thing. But a lot of people give up and you had enough reasons you could have, you know, it's really, really a really wonderful story. Tell your parents I think they raised a really good kid. Oh, thanks. I'm gonna tell them you tell them a guy from America on a podcast that that they'll be like shut up.

Emilio 1:03:13
They usually they usually they want people to tell them that.

Scott Benner 1:03:18
Yeah, I would imagine. I mean, I can't be the first person to think it. That's for sure. It's a really extraordinary what you've what you've

Emilio 1:03:24
Yeah, my last boss from my last job. It's like a cafeteria and next next to the house. I have to tell them that had told them that also. Like my uncle's when they get to know me Barrow, like you? They do tell them that?

Scott Benner 1:03:39
Yeah. No. You sound like a really special person. I'm glad to have met you. Thanks. Yeah. If there's nothing else, I'm gonna say goodbye. But I really do appreciate this.

Emilio 1:03:51
Yeah, I think we have speak about all the subjects we needed to speak on.

Scott Benner 1:03:54
We did good, right. We didn't miss anything. And I had a good time. Did you have fun? Yeah, a lot of them. Did you really? Okay. I'm glad to are you like, going to let your friends listen to this or no?

Emilio 1:04:05
Yes, I'm gonna send it to it. Excellent. That's really cool. Well,

Scott Benner 1:04:09
hello to everybody there. I hope one day to get to Galapagos Islands. I don't know if I ever will. The murdering stuff you said made me a little scared. But that's okay.

Emilio 1:04:18
Yeah, we were trying to figure out how to fix it.

Scott Benner 1:04:22
Yeah. You stopped shooting people and I'll come see this the turtles Oh my gosh. Alright, Amelia, hold

Emilio 1:04:29
on. This situation. The situation is in wackier. But in the Galapagos Islands, not not nothing else.

This stuff happens.

Scott Benner 1:04:36
I'll be away there. Yeah, yeah. Yeah. Well, yeah. It's back on my dream list then. I I really mean it. I have all the places that I

Emilio 1:04:46
you should you should come. It's it's a very special place is very

Scott Benner 1:04:49
nice. Yeah. All right. Okay, well, you've, you've made me feel good about it.

Let's see who were thanking Dexcom on the pod, Emilio. Oh, and guess what else? You for listening. Thank you so much to Dexcom for sponsoring this episode of The Juicebox Podcast. Don't forget, look into that free 10 day trial@dexcom.com forward slash juice box. You also may be eligible for a free 30 day trial the Omni pod dash, and the only way to find out is it on the pod.com forward slash juice box. Take the T one D exchange survey takes fewer than 10 minutes you help someone with type one diabetes, and you support the podcast T one D exchange.org. Forward slash juicebox. If you're looking for the private Facebook group, it's called Juicebox Podcast type one diabetes, answer you answer, you'll have to answer just a few questions to get in so that the you know the algorithm knows you're a real person. There are almost 25,000 members in that Facebook group. It's really a wonderful place full of helpful, lovely and dedicated people, you should check it out. Enjoying the podcast, why not leave a five star review. Wherever you're listening, five stars Check, check, check, check, check however many five is and then write like a beautiful review that people could read and go Oh, I see why this person likes the podcast. I will try it too. That's very helpful. But the most helpful thing you can do is share the show with someone else and subscribe in an app. So I don't want to say the most helpful thing. The two most helpful things you could do for the podcast is to share it with someone else. And to subscribe or follow in the app you're listening in. And if you're not listening in an app, it's possible you're over gonna say 65 and you're listening online like this web browsers amazing. You can hear words from it. If that's if that's what you're into. Don't let me stop you. It's okay. But otherwise, you guys should really check out a podcast that they're free and easy and make it a nice experience when you're listening. Don't forget to subscribe and follow, follow and subscribe. That's it for me. I'll be back very soon with another episode of The Juicebox Podcast.

#673 Robin Arzon

Robin Arzon has type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 673 of the Juicebox Podcast

you have been asking for ever for me to get Robin ORS on on the podcast. And today he or she is Robin is here to talk about a lot. I asked her a ton of questions of my own questions from you the listeners, and she's gonna tell us a little bit about what she's doing with today's sponsor. Jeeva. Glucagon, if after she's done talking, you're super interested. Head to G voc glucagon.com. Forward slash Robin orizon. US dollars on I'll just spell for you Robins with an eye. So it's our OB i NARZON. Robin Arsan G voc glucagon.com forward slash Robin Arsan. Anyway, huge thanks to G vote for helping me get Robin on the show. I hope you enjoy it. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. At some point during the show, you're going to hear me talk about an article that I wrote about Robin many years ago. If you're interested in it. I'm going to post it in the private Facebook group later. You can find it there Juicebox Podcast type one diabetes on Facebook. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. If you're a US citizen who has type one diabetes, or is the caregiver of someone with type one, you can spend fewer than 10 minutes filling out a survey at T one D exchange.org. Forward slash juice box. This survey will ask you incredibly simple questions about your life with diabetes. It is completely HIPAA compliant 100% Anonymous, and we'll help people living with type one. It also supports the Juicebox Podcast when you complete the survey, T one D exchange.org. Forward slash juicebox. So I'm going to jump right in because I know our time is limited. And usually there'd be some light chitchat where we get comfortable. But we'll skip over that. No problem. I'm gonna go with my first question. I know you know, because everybody who's involved in getting you on the show today told you but prior to that, do you remember me? You shouldn't but do you?

Robin Arzon 2:38
I'll be honest, I don't I don't recall our initial conversation. But my team did update me that we had spoken before.

Scott Benner 2:46
But of course would understand that you didn't. But I just it was crazy. Prior to the podcast, even starting at the very beginning of 2015. I got a note from an associate. And they said would you would you interview this person? For me? I think it was for the pod or something back then. And and there were like I said, Sure. What's the balance? It always uses on the pod and she's gonna be a lawyer, but she's like a marathon runner now or something like that. And I was like, Yeah, sure. So. So we have this long conversation, and we're talking about everything. And in the middle of it, you just, you know, started picking through your life a little bit. And you told that, you know, story, which I'm sure you've had to tell a million times since then, about when you were in college. And, and the the problem you had in that bar, and I was just like, oh my gosh, this is incredible. And then you and I only ever spoke once more. And we were talking and you said it was you were saying thank you and whatnot. And then you were like, Hey, I gotta go. I think I'm getting a book deal. And then that was it. And then I've watched your life, like explode over the years. And I feel like I know you win. Obviously I do not. So

Robin Arzon 3:58
that's amazing. Wow. So you you really have witnessed quite a few moments.

Scott Benner 4:03
I just, I just feel like I've been I feel like a proud parent. And no one knows I'm part of the part of the family. That's I guess what I want to really dig in and start by asking you like from that moment, like back there and like since like 2015 Right, early 2015 How did you go from a girl who thought she was going to be a lawyer and decided to run marathons, etc. To where you are now like what path way did you take? It couldn't have been?

Robin Arzon 4:32
Oh, gosh. Lots of pathways, I guess. You know, there's no there's no one bright path. Success is often very circuitous and windy. And I think I really aligned myself with what feels like a yes, you know, I really own my note to protect my yeses and, you know, really develop partnerships that feel in alignment With how I live my life, whether that's with peloton or with evoke, so that g vocal 10. So that really, I guess is the answer to your question. I don't know if you were looking for something more specific, but I oftentimes really go on intuition.

Scott Benner 5:15
No, I appreciate I appreciate that as a as a great answer. So you just sort of do what seems right to you, and ignore the things that seem wrong. And that's how much yeah, I mean, that that had to be I mean, for people who don't know, like, going all the way back to that point, like, you were like, you were a student, you were focused on being an attorney. And then just one day, we're like, No, instead, I'm going to do this. And were you interviewing people at one point in the very beginning?

Robin Arzon 5:44
Interviewing like, something like that? Oh, well, what initially, when I left my law firm, when I stopped practicing law, I, at that time, had a blog. And so I was interviewing athletes and Olympians many of whom are now my friends for that for that blog. So yeah, I loosely, I would say call it an interview, but it certainly wasn't, you know, any Pulitzer Prize winning journalist.

Scott Benner 6:09
It's just fantastic. I mean, the I remember, it's clear as day talking to you back then, that the leap from I mean, you were just about graduated from your undergrad, right? Or you had graduated?

Robin Arzon 6:19
No, I would have graduated. Yeah, I, I practice law for eight years.

Scott Benner 6:24
Yeah. It's just It's, I mean, I'm saying this is it's insane to have accomplished something like that. And then just said, Oh, I'm gonna sit this over here on the shelf and try something completely different. That begins with a blog and interviewing people talking into your iPhone or whatever. It's just Yeah, right. Do you look back and ever think, wow, that person was like, how do you see yourself in hindsight? Do you see yourself as brave or, like, as you're older, and you're a mom, now? Do you think, God if my kid does that I'm gonna be so sad?

Robin Arzon 6:54
No, I don't think I would be upset. I sure, there are lots of moments of bravery. But I think, you know, I, in what I do every day, I like to normalize the everyday superhero. You know, I joke that I have a superhero toolkit. And, you know, part of that involves trusting oneself and being brave. And I know, you know, part of what we're going to talk about today is my partnership with Jeeva, hypo Penn, and that's in my superhero toolkit now, right. And as an athlete, and as someone living with type one, I want to feel prepared, I want to feel ready. And I want to, I want to optimize opera opportunities for bravery. So yes, I do think there were lots of moments, you know, where I had an opportunity for bravery when I was leaving law, certainly as an athlete living with type one. And now it's both with passion and preparedness that I that I navigate the next. The next adventure is, whatever whatever they may be.

Scott Benner 8:03
It's interesting that you bring it up, because I have questions here from listeners of the show. And it's mostly about that they they're, they're just hungry to know how you can do such an intense exercise with type one, they want to know all kinds of stuff, which I'll ask you about in a second. But the one thing I want to tell you is that of a really robust Facebook group, like 25,000 people in it, and so I went in there, and I just sort of said this, there's just this morning, like, Hey, I'm going to talk to Robin today. Do you have questions and hundreds of questions flowing, but along with them? Were pictures of children riding bikes, you know, dressed in leotards and notes from their parents and notes from their parents. Please tell Robin how much she means to our family. Like I'm not kidding you dozens of them. I mean, if I read if I read you every one of the little stories that people sent me, that's what we would do for the next 45 minutes. And so, I guess, let's start with that. Let's start with their kind of nuts and bolts questions because people want to know, like, what your regimen is like before you ride people with type one experience, you know, loads while they're exercising or sometimes highs from adrenaline weightlifting of course impacts differently they want to know everything they want to know what you eat before you get on the bike. How come they don't see you looking at your blood sugar during that ride because they can't make it through without looking and and all that stuff. So what's your prep like for for a ride?

Robin Arzon 9:35
It really depends on what my training schedule has been that day. Before I teach at peloton I normally have done my own lifting, running or cycling depending on what what the classes that I'm teaching. So for example, today, I ran in the morning and I didn't just drink water beforehand. And then towards the end of my run, my blood sugar started dipping a little bit, so I have half my smoothie. Then I went to the gym, I did an hour of weightlifting, and some metabolic conditioning. Again, just water throughout towards the end of the metabolic conditioning, my blood sugar was dipping a little bit. So I finished the rest of my smoothie that I went to the studio I taught to cycling, one cycling class and one arms class. And it's whether I eat like half a banana or a little bit of juice, or usually I'll plan my meals around my training. So for example, this morning, when I drink my smoothie, I didn't take any insulin from my smoothie, I just literally use that sugar during my training. And I timed when I was going to be drinking that smoothies based on what my blood sugar was doing. And then my blood sugar was pretty even heading into my cycling class. And then after my cycling class, I had a banana because I saw that my blood sugar was dipping throughout the classes. I mean, I know my body, I know how to listen to my body, I can vary with pretty good accuracy tell within a range or at the very least whether I'm low, average normal, quote unquote normal, or are trending high, I really am very that in tune with my body. So yeah, for 3530 or 45 minute class, I really don't feel the need to look at my well my data

Scott Benner 11:26
people I don't know if this is a reference, you're gonna know. But you're you're you're closer to my age than not. So maybe you will people watch you like they're studying. There's a brooder films that I have. I have notes here about I don't see her look at her watch. People have theories that you have your blood sugar in front of you behind a camera where you can look up and see it but they can't see it. It's fascinating to the to think about how they're wondering because I think you're accomplishing something that they they haven't been able to accomplish yet, which is take this ride without needing sugar adoring it or being worried about your blood sugar. And they're just trying to imagine how you're doing it's really great of you to share this. So do you see something different? When your strength training? Do you need insulin for that?

Robin Arzon 12:13
Yeah, so I so for strength training, I almost always will have my normal insulin on board. And if I see myself going low, then I'll just plan again, like I have a smoothie that I drink every single morning and I just literally drink it when if and when I'm starting to trend a little bit lower. Sometimes depending on like I'm going really heavy like this morning, I did a pretty heavy five by five that adrenaline is going. And so I'm pretty I was pretty actually even throughout up until the very end because because of that adrenaline, right? And when I'm doing more cardio based things, then you know that my, my, the chances of me going lower or higher. My chance of me going lower are more likely. But yeah, for things that that really pump up adrenaline. I'm mindful of that. And when I'm doing sometimes on Sundays, I'll do like two hour lifting sessions. And during that second hour, I almost always need to give myself a little bit of extra insulin to accommodate for the adrenaline.

Scott Benner 13:17
Can I ask you? I don't know if you share this stuff with people. But are you you're wearing a pump and a glucose monitor? I imagine. Yeah. And I looped them. Oh, you're looping? Oh, very cool. My daughter lives. Okay, so you're I'm gonna guess you're using Omnipod and Dexcom? I am Yes. Cool. So. So does the loop do a lot of the work? Do you find the algorithm? Is it helping? Like when you look back at it later? Are you seeing it giving insulin or cutting away? Or are your settings kind of rock solid? Where it just sort of rides the way you have it set up?

Robin Arzon 13:51
It definitely helps. Yeah, I would say that the algorithm is advantageous for sure. And my settings are pretty dialed in. And I really adapt my settings based on what I'm going to be doing. You know, so I know how my body is going to react. And you know, for for example, for long runs when I was marathon training. I was really, really grateful to find something like GMO paper pen because then I would just throw that into my into my running Bell and I wouldn't have to think about it in the off chance. Thankfully, I've never had I've never needed to use any type of glucagon injection. But that's the kind of like peace of mind that I like knowing and the worst worst case scenario and I'm in a severe extreme emergency situation that I would be covered. But for the most part, you know, my settings are very dialed in and I am incredibly body aware. And I bet on myself. I don't you know what I made like I every I don't need to check every two seconds because I trust myself and I'm willing, you know, I'm willing to take a certain certain element of

Scott Benner 14:58
risk. Yeah. So Robin, you're going No, I'm gonna tell you something right now, like you're being a really good sport by trying to talk about how you're doing all this stuff, because I know from having my daughter set really well to and her settings are rock solid, that when people ask you like, how do you do that? I say, it's not really there's not a lot to say because the settings are so right on that even as you move from activity to inactivity or strenuous activity to cardio or whatever, that your settings are so close that it, you don't see the impact that they imagined. And that's why I go back to them. And I say, you know, you got to get your Basal right, first, you have to understand how to Pre-Bolus meals and the glycemic load an index of the food you're eating, like, to me that's, that's the key. It's not the like, it's not the magic, hey, 25 minutes before you go for a run, eat 15 carbs of like, I don't know, those are workarounds to a problem that could be fixed other ways is how I kind of say it.

Robin Arzon 15:55
And, yeah, I mean, I really, I really think it's important to observe, I when I was diagnosed, I thought to myself, Okay, you're gonna just have to treat yourself like a science experiment, like take in as much data as you're comfortable. And then repeat what works and change what doesn't. And I have plenty of days where I'm just like, oh, gosh, why isn't this going my way. But for the most part, I'm able to operate largely unencumbered. Because I really approached my care. Like, I had to get curious. I had to get curious, instead of getting frustrated, get curious.

Scott Benner 16:32
See, the way I think about it, as you have to have these experiences over and over again. And when they do go wrong, which they inevitably will, instead of, kind of like being upset by it treated as a learning experience. Look at what happened. So you can make adjustments for the next time. I think we're saying the same thing. Really? That's really cool. Yeah, that's excellent. Hey, I'm going to jump around a little bit these questions a little bit. Here's a less serious one. This is a quote, how do I walk away from a spin class without my crotch and but feeling like it's been pummeled by a sledgehammer and set on fire? Do you have anything about that?

Robin Arzon 17:05
That's funny. You do get used to it? I would say check your bike settings, because you should not feel like you've been set on fire. But yeah, I would say you know, definitely check your your bike settings to make sure that you're seated on the bike appropriately, but otherwise, you do get used to it after a few cracks.

Scott Benner 17:23
When you have I don't know if you share this, but you appear to have as little body fat as humanly possible. Do you feel like your pod and index calm? Does it feel different people want to know when you don't have as much body fat when you're inserting them? Or how would you be

Robin Arzon 17:42
I have made Yeah, I have inserted it them in areas where I actually feel it. The other day, I inserted it accidentally, like in my oblique and that did not feel so great. So I removed that part a little bit early. But I tried to choose areas that have a little bit more cushion.

Scott Benner 18:01
Or you aware of that photo of you know, Chris Freeman, he was an Olympic cross country skier has type one. There's a and he's got to know him personally. But yeah, who I mean, yeah, there's this very popular photo of him where he's wearing his on the pod like up on his PEC. And I always, like when I saw that photo, I thought, well, I can find a place on my daughter if he can wear it there. You know, like, so. It's just a lot of pinching that goes on when you put it on, but I always use that. Yeah, I

Robin Arzon 18:26
always I always pinch up for sure. Yeah, after

Scott Benner 18:29
right. People are wondering if you have any advice for young athletes who have type one and it's been recently diagnosed about making the transition from there the life before they had to worry about their blood sugar's to it.

Robin Arzon 18:43
I mean, races diagnosis is tough, right? Because you're just figuring out what works right like there's no part of the difficulty and the challenge of type one is that it is unpredictable like you know that's what's so cool about the G vocal pen to be ready campaign is that it's like that's the message is be ready.

Scott Benner 19:08
G voc hypo pen has no visible needle, and it's the first premixed auto injector have glucagon for very low blood sugar and adults and kids with diabetes ages two and above. If you'd like to learn more about Chivo Capo pen, all you have to do is go to G voc glucagon.com forward slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk.

And don't forget if you'd like to vote to know that you heard Robin on this podcast visit G voc glucagon.com. Forward slash Robin Arsan. Now let's get back to Robin she was saying something about B Ready.

Robin Arzon 20:03
I love that message because it's encouraging someone to really advocate for themselves. And you know, we we are warriors, we are diabetes warriors. But it doesn't mean that we can't advocate for ourselves, and then prepare for what? How we define our finish line or what that finish line looks like. So I would say, for young athletes, advocate for yourself, you know, if you want to continue playing that sport, you absolutely can and should. Now, you're just going to have insulin and maybe a Devo type of pen in your toolkit. But, you know, that initial journey, you know, it's challenging, and then as you bring it, you bring in different elements, then that is, you kind of have to recalibrate, you know, what, what the facts and what the care are. But I think, focus on what you can do rather than what you can't do. And I do understand, especially as it relates to children, you know, caregivers are really just trying to keep kids healthy and safe. But we should be doing so in a way that encourages them to lead really dynamic and robust lives. And they can absolutely continue to do that safely.

Scott Benner 21:11
I like what you just said there about, focus on what you can do, because you can build off of that. So maybe, maybe you're not, you know, maybe you can't go do the run you used to exactly do right away, but do the things you can do learn from that. And then adapt, adapt, adapt as you go along. That's a really great idea. All right. Yeah. You know, I keep thinking when you're talking about to evoke that. The hypo pen is the first. It's the first glucagon that my daughter's actually carried with her because of the form factor. Oh, good. Prior to that, we we would stash them at the house or at school, but they were never on her person. And now she has them constantly with her in six months from now she's leaving for college for the first time. And it is a real, there's a real sense of calm for me knowing that it's something that's on her person all the time. Yeah, I agree. Yeah. Tell me about the be ready campaign. I know you're involved in it. And what's it same?

Robin Arzon 22:04
Well, I, you know, as I mentioned, it's the idea that we're empowering folks living with type one to give themselves peace of mind when I think be ready, I'm taking keys, cell phone, water, rescue carbs, you know, like glucose tabs in the event of a low blood sugar. And then for severe low blood sugar, incidences, you've got the GMO carboplatin which hopefully, you don't need, right, but you know, you throw it in your backpack, I throw it in my running pack, I have it in my training, I take a bag, you know, when I go to lift heavy weights, and I have that in my in my training bag. So that's the idea behind it is that, you know, this is something that you are going to use an only in an extreme circumstance or perhaps a loved one we would use for you. If you are, you know, in a really unpredictable, severe low blood sugar event.

Scott Benner 22:54
Hey, again, I feel weird for knowing things about you that other people told me, but are you plant based with your eating style?

Robin Arzon 23:03
I am yeah, I have I've been plant based for almost nine years.

Scott Benner 23:07
Okay, so Well, how long have you had type 1000?

Robin Arzon 23:11
And less? I was I was vegan before I was type? 1013. I want to say

Scott Benner 23:22
maybe yeah, I love that. You don't? I don't know exactly when my daughter was. Yeah, I

Robin Arzon 23:25
don't know. I mean, you know, it's interesting, because like I had such such a lot like my primary ways of identifying in the world don't happen to relate to me, you know, living with insulin and living with these bionic products. You know, my identity is a lot of things. So I don't think you know, I don't think about it that much. You know, and, and folks, I do have followers who are like, Oh, why don't you talk about this? Why don't you talk about that. And it's not that I'm clearly we're talking about it today. It's not that I'm unwilling, it's just there's so many other things that I think about in my day to day that really empower me to live boldly.

Scott Benner 24:09
Yeah, you know, it's funny people were asking if you saw a difference between how you had to use insulin plant based but in prior so you you obviously don't know but do you think generally speaking do you use I mean, what's the impact on I mean, there's still a lot of protein and in what you're eating Do you see protein spikes like people do when they eat a cheeseburger and then see a arise 90 minutes later from the protein? Do you see that with what you're eating? No,

Robin Arzon 24:36
not not at all. I very rarely, it's only when I eat processed foods. Of course, we all know like the pizzas and things like that, that I that I and I would use non non dairy cheese. But I eat a lot of the same stuff day in day out. So you know they how food is going to affect my body is at this point law. Originally large, largely predictable, and being plant based, and they enabled maintenance, obviously, that's a very personal choice, and enables me to feel faster from my workout. And really feel like I have control over where my food is coming from and what that looks like,

Scott Benner 25:18
How often would you say do you have? Well, first of all, what's the range you shoot for? When you're not working out? Where are you? Where are you hoping for your blood sugar to be?

Robin Arzon 25:29
I try to keep it between 90 and 100.

Scott Benner 25:31
Cool. Okay. And then. So for my daughter, we use like 70 and 120 are her Dexcom alerts. So my my question was, is how often do you have to do something to push your blood sugar back up to 90? Is it? What kind of frequency or does that happen with?

Robin Arzon 25:50
Um, meaning, like, what I needed to treat a low or

Scott Benner 25:55
something like not dangerously low? Yeah, pretty rarely. Okay, do you see? Yeah, I

Robin Arzon 26:02
would say it's pretty rare.

Scott Benner 26:03
Do you see highs more frequently than lows are not even enough to speak of?

Robin Arzon 26:09
I'm not enough to speak up. I mean, I will certainly say like, if I'm traveling, if I'm out to eat, you know, timezone changes, something like that. So anytime you change variables like that, things can get a little funky. But I would say it's really only like, if I'm, you know, out to eat, and I'm just like, okay, screw it. I'm gonna have this, this and this. And in two hours, I'm probably going to need to treat a trending high, you know?

Scott Benner 26:35
What's the, what's the, what's the average meal Bolus for you? Like, units? Wise? Is it I know, we're not? I know, everybody's different. But I'm just trying to get a feeling for the plant based thing. Is it? Because I'm getting I mean, you're you've got to be. I don't know how tall you are. But you look like you're built out of a muscle. So you know, I'm assuming that being in good shape is, is part of how the insulin works. And you write because it gets through your body? Well, I'm assuming you're really well hydrated all the time. You know, so you're getting good insulin circulation. If you don't want to answer it's fine. But I'm just wondering, like, what what would you consider like a big Bolus when you're having those like, restaurant meals?

Robin Arzon 27:12
Oh, big. Probably over four or five units. Okay.

Scott Benner 27:21
Gotcha. All right. I have more questions. Again, I'm sorry to know about your life. It's creepy. But you've had a baby in the recently congratulations. I know it's a little long to stay. Still. But people are wondering if you have any breastfeeding tips for with type one or pregnancy tips for type one.

Robin Arzon 27:45
Looping helps a lot. Certainly, I would say. Breastfeeding. Yeah, at the beginning of breastfeeding, that was tricky. There were I had many more lows in the beginning. You know, pretty much after you have the baby. Of course, in the third trimester, as the placenta is growing, your insulin needs really skyrocket. And I think mine like double, maybe even triple by the end. But as soon as you have the baby that that really tamp down, then if you're breastfeeding, your body is basically a furnace like you are like I really likened it to you're kind of always in that low level of cardio, least in the beginning as your milk supply as is developing. So those first six weeks, I was very, you know, I trended low, much more frequently. So if I were to, you know, Monday morning quarterback approached, I would have reduced my basil pretty significantly. And then, you know, Bolus kept an eye on my blood sugar and Bolus more frequently, just until I got a handle on what you know what my new Basal rate should were, should have been, you know, during that breastfeeding, initial breastfeeding, part of the journey. Yeah,

Scott Benner 28:56
I've interviewed a number we actually have series. I want to track a woman through her pregnancy interviewed her at every trimester while she had type one. And we've had some experts on to talk about it. And some of them say that the Basal needs and your bolusing needs in the third trimester, almost stop as soon as the placenta is delivered. And you almost have to like, swap back again. So now in hindsight, you think maybe right after the delivery, your needs lowered, but you kind of stayed with the settings you were at? Is that how it went? Or do you think your body burning?

Robin Arzon 29:26
I definitely lowered it regardless, because I knew, you know, I did some research and I was aware about that after, you know, the placenta is no longer a factor. But I would say, you know, middle of the night lows were much very frequent in the in those first few weeks, and it would be sometimes like, you know, I'm up to keep the baby and I'm going low. So I tried to just, you know, you know, plan for plan for the unpredictable both the baby and breastfeeding and loads. And then finally, you know, kind of I reached, what's my blood supply kind of came in? That roller coaster alleviated a little bit. But yeah, those first few weeks were challenging.

Scott Benner 30:13
Did you address it mostly with food or with insulin adjustments? Or a little bit of both?

Robin Arzon 30:19
I think it's yeah, it was definitely a little bit about initially, it was predominantly food, I would just be like, Okay, it's to the morning, I'm just going to eat half this, whatever, banana or drink some juice, but then I wanted, you know, I wanted to get my settings right. To the extent that I could, I could, and I ultimately did. And then, you know, for the remainder of my breastfeeding journey, it was normal, like, normal robbing

Scott Benner 30:44
cool. Again, I'm gonna ask a question. It's not my question. It's someone else's. And if it's too personal, please don't answer it. People are wondering if you're thinking about having your daughter tested for TrialNet like to see if she has any type one markers. Have you ever considered that or even thought about it?

Robin Arzon 31:01
My husband and I have had discussed it, but we're not going to discuss that publicly, of course.

Scott Benner 31:05
Okay. What was the other question I had about that? Oh, in your family line, after being diagnosed with type one, because you were diagnosed as an adult? So first of all, was that shocking? Are there other autoimmune 's in your family that, that it made it seem reasonable when it happens? Like do you have any relatives with type one or? Celiac? No? Anything really?

Robin Arzon 31:28
No, nothing like that. So that was definitely surprising.

Scott Benner 31:31
Yeah. What was that, like? As an adult trying to adjust to it? What do you think it would have? I mean, when you talk to kids who go through it, do you see similarities? Or do you think it's it's very much different?

Robin Arzon 31:44
I don't know. You know, I only know my own experience. I cannot I really, I can't say and I don't speak to a ton of kids. About this specifically.

Scott Benner 31:55
Well, if you want to speak to a ton of them ever, I have a list of them over here who are dressed up like you riding peloton bikes. So I actually have this here. This, this woman tells me that when she returned home from the hospital, with her 12 year old son, there was no t one D in their family. They were basically she said she was having a breakdown because her son was diagnosed she got on her peloton bike to try to alleviate her stress. She randomly picked a 20 minute ride, and for the first time realized that you had diabetes. And I guess you raise your arm and she saw a sensor or something like that. And she said it's snapped her into reality, she realized she could handle this for her kid. And they've just been been going full bore after that. And I'm telling you, that's one of like a dozen stories like that, that people sent me. Really crazy what

Robin Arzon 32:44
I'm grateful that I was able to inspire her.

Scott Benner 32:47
So I have to tell you, like what you said earlier about diabetes, not being a very big part of your life, you know, moment to moment, because you are incredibly busy. You you you run the world, it seems like to me. I don't know all that you do. But it seems like a lot. And and I get that. And even if you were to talk to my daughter who's just about 18, she would talk about it like you do, it's not at the forefront of her mind. It's not it's not you know, it doesn't stick to her constantly all day long. But then, on the flip of that, is that just you having it and being yourself is such a you know, it's such an empowering thing for other people. Can you tell me what that feels like? Like, what does it feel like to not set out to be a role model for something but yet you end up being one? I like how you laugh?

Robin Arzon 33:40
Uh, yeah, I don't I don't know, I don't, I didn't certainly don't see myself as a role model. But I am someone who lives with a lot of aspects of my persona and my public my life as a public figure. And that's part of it. And I own it. And I not only preach what I practice, but I practice what I preach. So it I am living a life that is in alignment with my value system. And that's the only way I can answer it is you don't really choose sometimes you don't choose how the world perceives you. And, you know, I guess that's just an example of it. Yeah.

Scott Benner 34:22
So Robin, no, this has got nothing to do with me. But I receive probably about 15 letters, like these notes that people sent to you. I received them about the podcast every day. And they're, they're difficult to process like I listened to the uncomfortable nature of your answer just now. And I thought if you were to ask me that question, I would have sounded just like you. I just started out to make a podcast and I thought I would share the way we do things and it might help people and I didn't I never imagined what would happen. And then when people kind of mirror back their experience to you and they say hey, you did this or I was able to accomplish this because of something you said. I always just go Thank you. I'm so glad the podcast is valuable for you. I don't even know what to say it feels it's otherworldly, really. It's not it's not something I don't think I don't think a normal person prepares for that to happen to themselves. So I appreciate you and I think I know you feel so most people I guess know you right? Do you think through through your work with peloton and being an instructor there and that business but what else do you have going on you've written go you're going to write more books.

When you have diabetes and use insulin, low blood sugar can happen when you don't expect it. GE voc hypo pan is a ready to use glucagon option that can treat very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to G voc glucagon.com forward slash juicebox G voc shouldn't be used in patients with via kromus atoma or insulinoma visit G voc glucagon.com/risk. Once again, robins link for G voc glucagon is Chivo glucagon.com forward slash Robin Arsan now we'll get back to the show.

Robin Arzon 36:21
Yeah, I've written a few books. I had two New York Times bestsellers. The first one shut up and run and the second is my first children's book strong mama. I just submitted the manuscript for my third book, I have some cool partnerships happening, you know, in the fashion and beauty space. That that's pretty exciting coming out this year, I have some things you know, as it relates to being a mom, and you know, stuff for a fina as well some products coming out from for children. And, you know, of course, you know, my partnerships with companies like GE voc hyperopia, and, you know, natural corollary to how I live my life, right. So whether it's diet, you know, being able to continue to be bold, that someone living with diabetes, you know, because I have the GMO cocoa pen in my in my back pocket essentially, or whether it's, you know, continuing to put out more amazing content with peloton globally. You know, those the synergies are really important to me. And I, I partner and invest only with come in companies that I really use and aligned with with my day to day. So for example, I'm an investor and athletic greens, ag one that is a company that I really believe in. So any of the any of the partnerships that I speak about publicly as an investor and a brand ambassador, are things that I really use.

Scott Benner 37:50
Now, that's amazing. The athletic greens, that's a drink, right? That brings nutrients, vitamins, that sort of stuff.

Robin Arzon 37:58
Yeah, exactly. So I'll throw that in my water in the morning.

Scott Benner 38:01
What what's in your smoothie, you mentioned your smoothie, like it's a friend, I don't know if you realize that, when you speak about it, like it's a person in your life. So what's in that smoothie,

Robin Arzon 38:11
the smoothie is about, you know, One serving is about 20 carbs, and the carbs would change. You know, it might be mango one day, it might be berries, but you know, I'll I'll do the carb count, based on all know what the carb count is and kind of use that as a work back approach. Vegan Protein, I'll put magnesium in there, I'll put the Ag one in there. Gosh, what else is in there? Some vitamin D, some, sometimes some chia seeds, sometimes some hemp hearts, you know, it really depends on what we have in the cabinet. But it might be as many as like 10 to 15 ingredients, depending on depending on the day. And then greens will always throw in kale, spinach, whatever we have in the fridge,

Scott Benner 38:58
you make yourself at home every day. Oh, wow. This you're you're married? Correct? Yeah. Do you and your husband keep a similar kind of diet? Or do you eat two different ways?

Robin Arzon 39:12
No, we pretty much the same together every day.

Scott Benner 39:17
Would it be difficult? Do you think if one did something one way and one did something the other way? Or just more work? Maybe?

Robin Arzon 39:24
Um, I mean, it probably would make it. Certainly we would have more dishes. It's a lot easier to eat as a family. I will say that.

Scott Benner 39:34
What does I don't even know if you think about it this way. But do you think of do you think of the way you eat as a style? Is it something that you you don't you don't mean? Like do you do you have cheat moments or is it not? Or do you just there's part of me that thinks that you are just a person who sets a course on things and does them and doesn't deviate from them but I'm trying to find out if that's the case or not?

Robin Arzon 39:58
Yeah, I don't really have My philosophy of life, this is a cheating day or meal. You know, I don't, I don't live a life that I feel like I need to have a vacation from like, I don't only live for Saturdays, you know, my life is friggin awesome. Similarly, I feel in a way that makes me feel really good. And I love the foods that I eat. So I don't feel the need to kind of sneak away and have a a cheat. If I feel like having something, you know, if I want to eat birthday cake and eat birthday cake, if I want to have dessert, I'm gonna eat dessert, you know, I don't feel the need to kind of reward myself or punish myself using food.

Scott Benner 40:40
Okay, no, I mean, it makes a lot of sense. And so do you even? Are you aware of your your caloric intake during the day or anything like that? Are you just sort of like you just don't know, basically, you eat what you eat? Sounds like pretty repetitiously at the very least. So you probably know what you're taking in day to day.

Robin Arzon 40:57
Roughly, yeah. I would say I eat pretty intuitively. But I have a general sense of macros, macros and micronutrients, nutrients. Yeah. Okay.

Scott Benner 41:10
Is that something you were able to figure out on your own? Or did you need? Did you go to someone to help you understand the, the nutrients that your body specifically needed? Because it occurs to me. I mean, just to as a sidebar for a second, you know, we talked to a lot of different people on the podcast, and we have this one series called how we eat and people just come on and tell the tell the different things that they, you know, some people are keto, and some people are plant based, etc. And they come on, and they talk about it. But what I find talking to people, is that the happiest ones are the ones that seem to have found the eating style that fits their body. And and then if you don't, I mean, it's just, it's what works for them. They're happy, and they're healthy. And they're unencumbered. And that ends up being the right answer. So I don't know, I forgot my question. But I'm assuming that's, that's what I got my question again, I found it did you have to go to somebody to have somebody tell you, Hey, these are the macros that you need? Or how would a person go about figuring something like that out?

Robin Arzon 42:13
Well, nutritionists are certainly very helpful in that, you know, get getting an understanding of your lifestyle, how active you are. And that is a very important, I would say stop on the journey for somebody who is really just trying to educate themselves and do that kind of exploratory regex conversation. I've done a lot of I mean, I've really educated myself about what works for me, and again, to your point is, find what works for you. There isn't a one size fits all. And I definitely recommend, you know, seeking out a professional to help you calculate if macros are of interest is certainly not required for for all folks. But it's, it can be helpful data. And again, we should only be using these data points as ways to help us not, you know, to have more numbers, and more things to kind of inform you know, what, how we're doing and how we're doing what we're doing,

Scott Benner 43:18
right. However, a couple of minutes left, I want to ask you, so I'm gonna use myself as an example. I'm 50 years old, I make a podcast about 12 hours a day. And in the my free time I walked to the bathroom, the shower, and at my bed, I am not getting enough exercise. So at Christmas time, I was like, Okay, well, what seems low impact for me that I could get started with, and I got a bike. I rode the bike for three weeks before my knees started hurting. And now next month, I'm having my meniscus repaired. How do people know Don't worry, it'll be fine. But, but, um, but how do people who are who want to do something? Like what path is there to success, right? Because I made the decision and I made the move and I started doing it. Okay, I had a I had a, you know, a physical limitation, and I'm going to fix it, and I'm gonna get right back to it. But I mean, how do people How should people start? Because I mean, I watched a video of you riding that bike, I'm 100% certain I would have a stroke or a heart attack if I did that. So but I do believe I could get to it. But what is that? Like? How do I get to it? Is my question like, you know what I'm saying? Like how do people go from inactivity to activity with with the best chance for success?

Robin Arzon 44:35
Yeah, I would say small, consistent voices. You know, the sweeping change usually isn't the long term strategy. I would rather have someone do consistent, less intense movement or initially and for a longer period of time, and then you later on, you know, intense stuff like there is absolutely a place for intensity and working really hard and pushing heavier weights and running further distances and biking, you know, but I wouldn't recommend that, as someone who's new to movement start there, I would rather see what you can do consistently for one month, three months, six months, and then use that, you know, as as a building block. Yeah,

Scott Benner 45:25
I want to be clear, I don't think the bicycle like hurt my knee, I think my knee was already kind of there and just, you know, doing anything kind of pushed it over the edge. So just so lower, low, kind of lower, more consistent, maybe longer, less impactful until you start feeling that you can handle more and then more intense, more intense, more intense as you move forward. If you put real effort into that. Yeah. If you put real effort into that, is it fair to think that in a year, you could see a change in your life, I just want to let you know that the next part of our conversation is related to exercise, listeners should consult their physician before beginning or changing any exercise or physical activity program.

Robin Arzon 46:11
Oh, my gosh, you could see a change much sooner. And it also depends on the goal, right. So you know, if you're trying to build up cardiovascular endurance or approaches for that, if you're trying to build up, you know, build up more muscle and make your muscles larger and hypertrophy training, there's a there's a method for that, right? So you really have to begin with the end goal in mind of like, what is your objective and the more specific you can get with your objective, then you can specifically inform how you should be moving how frequently how intensely, you know that all of those are variables that really are informed by what the goal is, and, and where someone is starting from. But you but I would say someone really needs to start where they are. People's entire lives can change in a year. So yes, I would say change certainly can happen. And, and that length of time.

Scott Benner 47:02
Alright, so I feel like I have a minute left. So I have to ask you about, like your average day, like when you get to the end of Is there ever an end to your day? Do you? Do you have like a time where you say I'm not going to work anymore? Does work kind of exist throughout the day?

Robin Arzon 47:16
Yeah, I mean, I would say I don't usually take meetings, you know, after, by the time, it's my daughter's dinner time, I'm pretty much off in terms of any public facing commitment. I untether, myself from social media and emails, probably at around eight o'clock, and then I start to wind down, I have a meditation practice, I have a read, you know, I read every single evening before going to bed. And that, you know, I tried to create a transition time to anchor my day. You know, so I can start to let go, because my work is who I am also as a public figure. So I have to be very intentional with moments that are, are not that.

Scott Benner 48:01
I feel that that my job doesn't really exist in an office or a place. And that there are times when, like, sometimes my my wife will be like, What are you doing? And I'm like, I'm making money. And you know, but it's 10 o'clock at night. I'm like, I shouldn't be doing this right now. You know what I mean? So, hey, you just mentioned meditation? Do you practice anything specific, you transcendental? Or do you something else, there's just sort of a mindfulness that you that you approach,

Robin Arzon 48:25
if it is similar to TM, it's a Vedic practice that I've been doing, actually, since I was a lawyer, so quite a few years,

Scott Benner 48:34
when you're next to other people? Do you think? Do they do you think they look at you and go, that person has way more energy than I do? Or do you feel like you're not I'm saying, like, you have a ton of good energy, I guess, is what I should say. And you're obviously putting it to work in a lot of different places. But you're doing I mean, just the stuff I can see from you publicly, which is clearly not your entire life. I'm tired watching you. So why are you getting tired?

Robin Arzon 49:04
You know, I, I do prioritize sleep. I, I often take it back to basics, you know, like when I'm feeling like my energy is waning, and I might been lately be a higher energy person than most folks. But, you know, I asked myself very simple questions like, have you are you hydrated? Did you eat a vegetable today? You know, can you get to bed a little earlier, because we put the phone down for 10 minutes, you know, that we kind of know intuitively what we're supposed to do. But when we're, you know, filled with cortisol, and, you know, we feel like things are getting a little bit stressful or lot stressful. We kind of let those things fall. But really, we do have a framework that we can rely on and we should be relying on those things. Especially when and when, you know, times are tough. Yeah.

Scott Benner 49:54
I appreciate you sharing all this with me. I really do. I'm sorry. We had a little technical difficulty at the beginning kind of took away some of our time. I'm but I've just been really excited to do this. I've come at us 16 different ways and have not been able to get through to you. And when when we were able to make this happen, I was really excited people. I'm going to tell you Robin, the people that I know in the industry, when I when I said I was interviewing you, they were like, how did you get Robin to come on your podcast? So you are known as here we are. You are known as a tough get just so you know. There are people who were incredibly impressed that you and I were talking today. I hope you had a great time. I really enjoyed speaking with you. Thank you so much for doing this.

Robin Arzon 50:37
Oh yeah. Thanks for having me. Great to talk to you, Scott.

Scott Benner 50:39
It's my pleasure. Take care.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G voc glucagon.com. Ford slash juicebox. you spell that GVOKEGLUC AG o n.com. Ford slash juicebox. Also want to thank Robin for coming on the Juicebox Podcast and spending this time chatting with us is very cool. If you're new to the podcast, hang on for a second. And I'll tell you a little more about it.

First of all, run through some links G vote glucagon.com forward slash Robin arzani. Hit that link. Let you vote no, you heard Robin here on the podcast. And if you're a US resident, who is the caregiver of a type one, or has type one themselves, please again, consider going to T one D exchange.org Ford slash juicebox. And taking that quick survey. Now if you're new to the podcast, and you just came by to hear Robin, you should stay and hang out. There are over 600 More episodes for you to enjoy. You can check them out in a number of different ways in the audio app of your choice, meaning Spotify, Apple podcasts, what else? I think Google's got a podcast that there's there's a ton of podcast apps or other audio apps where you just search for Juicebox Podcast, type one diabetes, hit subscribe or follow. And you're on your way. If you're having trouble finding a podcast app, go to juicebox podcast.com. And there are links right across the top of the page that will get you started. The podcast has a vibrant private Facebook group. It's absolutely free, has 25,000 people in it and is waiting for you you can look around and see what people are talking about. We'll jump right in Juicebox Podcast type one diabetes on Facebook. The show has different series defining diabetes, which goes over all of the terms that you might run into in your life using insulin. There's the diabetes Pro Tip series with me and CDE Jenny Smith, where we talk about all different kinds of ways of managing type one, you might enjoy the diabetes variable series that talks about things that impact your life with type one, such as alcohol, or shopping at Walmart, or other things that make your blood sugar go up and down. The after dark series covers things like eating disorders, complications, bipolar disorder, drug use, and so much more adult topics for people living with type one. There's this series all about algorithm pumping. Are you looking into on the pod five control like you, Medtronic sucks 70 G, and you'd love to hear conversations about those. We have that too, right here on the Juicebox Podcast. And don't forget the how we eat series where a new person comes on to discuss their eating style intermittent fasting, keto flexitarian Bernstein FODMAP doesn't matter if it's a style of eating. We've talked about it here on the podcast. One more time, jump into a podcast app or an audio app start today. If you don't know where to start, go to that Facebook group Juicebox Podcast type one diabetes, and right up top. In the featured tab. There's lists and lists and lists of episodes that you might be interested in. Thank you so much for listening today. I'll be back very soon with another episode of The Juicebox Podcast.

#671 Type 1 in India

Preet's daughter has type 1 diabetes and lives in India.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 671 of the Juicebox Podcast.

In this episode, I'm going to be speaking with Preet. Her daughter Nora was diagnosed with type one diabetes not too long ago, and they have an interesting living situation where sometimes Nora is with her grandparents for long periods of time while pre travels for business. This episode is going to give you a good look into what it's like to raise a child with type one diabetes in India. It's actually very interesting. You're gonna like it. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're looking for the diabetes pro tip episodes, they begin at episode 210 In your podcast player, or they can be found at diabetes pro tip.com, and juicebox podcast.com. As a matter of fact, if you join the private Facebook group Juicebox Podcast, type one diabetes, and go up to the top to the featured tab, there's lists of all the different series for you to look at. And use and keep for yourself if you like.

This episode of The Juicebox Podcast is sponsored by touched by type one, learn more about what they're doing at touched by type one.org, or on their Facebook, and Instagram pages. It's a great organization doing wonderful things for people living with type one diabetes, and they would just like it if you take a moment to find out more about them touched by type one.org. If you'd like to help people living with type one diabetes, and you're a US resident who has type one, or is the caregiver of someone with type one, you can help by taking the brief survey AT T one D exchange.org. Forward slash juicebox. Take you fewer than 10 minutes, it will support people with type one, it will support the podcast. It is very worth your time. I hope you're able to do it t one D exchange.org. Forward slash juicebox.

Preet 2:23
Hi, Scott, thank you so much for having me here. My name is Preet. I am a parent to type one diabetic daughter who was diagnosed last year in middle of COVID. And we are based in India.

Scott Benner 2:41
What's your daughter's name? are we sharing it today?

Preet 2:45
My daughter's name is Noor

Unknown Speaker 2:50
How old is she?

Preet 2:52
So she's seven right now. When she was diagnosed, she was six years old six.

Scott Benner 2:58
Any indication that something like this would be happening? Or did it come out of nowhere?

Preet 3:04
No, actually, so this was this is the first ever case in our family. Overall, we have we had no idea about this. But somehow we could observe some symptoms. So before she we actually thought there's something wrong with her. Since passed too fast. Two months, we could see her she not gaining weight turning skinnier, and she would go to pee frequently drink a lot of water. So she has she has not been someone who really likes to eat a lot. And she would just always be hungry. So that is when we realize that maybe something is not right with her. And we have a normal sugar testing kit at her home because my mom she recently got diagnosed with type two, because of her age and we had that kid so when we when we checked her fasting sugar in the morning, it was 269 and we had to contact her pediatrician and from there on it was like hospital visits admitted to hospital and all

Scott Benner 4:14
it's interesting of all the signs. Her hunger was the one that that kind of made you the most like Ooh, there's something wrong here because she just was never hungry prior to that.

Preet 4:26
Yeah, she was never a foodie. So she would just have basic food and that's it and this time, she would ask us to cook some specific things she would have these bad cravings and when she would eat them she would be like, Wow, this is so tasty yummy. And you know, she would start kissing hands off her grandma. I live with my parents. And she were like wow, you have you have made such a tasty food. So everything was a bit weird, but definitely she was turning skinnier. And she was paying a lot right Shiva started by doing bedwetting in the last few days, I say,

Scott Benner 5:03
Where were you in? Where were you when this happened in India?

Preet 5:08
Yeah. So that's I think that's a big part of this whole story. I was not in India at that time. So I traveled for work. And I was in the North American region at that time, and I was supposed to fly back in March last year. And suddenly, this whole COVID thing happened and all the flight, just flat flights got stopped totally. And I couldn't fly in. And at that time, it was like, okay, the situation is really bad. And it will improve in a month or so. So let me fly back. Let me come back then. And this sort of stretched till July. So she was diagnosed in July, and I sort of felt all of this then I used to spend time on video calls with her. So she would drink water, and then she would go to pee, she would eat in front of me. And that's why I asked my parents that there's something wrong with her. And it's not normal. And apparently, just a day before. And it was such a sheer coincidence. I was watching a documentary of Nick Jonas. And they're exactly they highlighted the symptoms after which he was diagnosed with type one. And I was like, this is exactly what Nora is going through. So I asked my parents to just check her sugar level when she wakes up in the morning next day, this all happened while I was sitting here, and totally helpless, totally restless, couldn't do anything.

Scott Benner 6:38
No kidding. For. So How long had you been away from her when you started realizing what was happening?

Preet 6:46
So I was away for her? Three, three to four months. And that is when we realized that something is wrong.

Scott Benner 6:56
Is that your average travel time for work? Or was this because of COVID? Specifically?

Preet 7:01
Yeah, this happened specifically because of COVID. Otherwise, I'm maximum traveling for two months. And then going back to her

Scott Benner 7:09
does? Did she have COVID? Or Did anyone in the family have it?

Preet 7:15
So that's the thing, so no, to my, my parents were overly cautious because they both are old. And then they had a child to manage all by themselves. So they were very cautious and they didn't contract COVID either of them from from what we know, you know, we never know that we must have and we might have, but after she got detected and you know, in India, when recently when there was second strain, and everyone was dying, that is when everyone in my family contracted COVID.

Scott Benner 7:47
Okay. Your parents have had it since then. or No. COVID Yeah. COVID like in the second kind of wave did they have? Oh, yeah.

Preet 7:59
Yeah. So in second wave, Scott, it. It has been so bad that every Indian they have lost someone who is really close, not someone, many people. So we were literally people were dying. And in middle of that, I came to know that even my parents, my daughter, all of them have been tested positive. So it was very stressful. And again, I was not with them. Yeah,

Scott Benner 8:22
I'm sorry. Are vaccines available there at this point?

Preet 8:28
So yeah, so for COVID My father got fully vaccinated. And my mom, so when they got COVID, they were not vaccinated at that time. But afterwards, my mom and my family, yeah, they all got the vaccine.

Scott Benner 8:50
Wow, that's, that's it must be insanely scary. I mean, I remember the news stories from that moment out of India were horrifying. My daughter has a close friend who has family in India. And that's all they talked about for quite some time. And then on top of that, you're not there.

Preet 9:11
Yeah, it was horrifying. So. So what happened was when she got detected, at that time, we had some evacuation flights from India being sent here. And I tried to jump on the earliest one, but still, I had to wrap things here and the flight which I got was two weeks later. And I went back and but unfortunately, I had to quarantine in a hotel facility there. I couldn't be with my daughter. And she had just got discharged from ICU. She was just out of the hospital and only my parents looking after them in middle of COVID being admitted in the hospital. That was really scary. And I tried to so they had some exemption that you can quarantine at home if there is some emergency but the officials there, they just couldn't understand that type one was serious. And they just considered it like a basic diabetes. And I was just making an excuse to skip the quarantine. But all I wanted was to be in front of my daughter. She just wanted to see me because she was going through all of that. And yeah, she had just been she had been really brave, but she still wanted to see me. That's a natural instinct of a child. No, of

Scott Benner 10:26
course. How did she tolerate COVID? How long did it take it to clear? And what were the impacts were?

Preet 10:32
Yeah, so luckily enough. First of all, I think I was really horrified that she got COVID. Because from what we were hearing, that these people who have any kind of weaker condition, they are hit really hard hit really bad. But somehow it was just like a basic flu for her. And we were still waiting, but but her pediatrician was quick enough to start the right antibiotics and the supplements for her immediately even before we could get the test results back. But yeah, luckily, it was just like a basic clip.

Scott Benner 11:17
What were they using at that time? When you when like, what did they give her?

Preet 11:23
Oh, I don't remember that. Those and biotechs on top of my head. Sorry.

Scott Benner 11:30
No, don't be sorry. That's interested and your parents are okay, as well. Oh,

Preet 11:34
yeah. So, yeah, they are okay. Now my mom has become really weak after this whole thing. She had the biggest and deepest impact. But yeah, the every Darrell Okay, now.

Scott Benner 11:48
Wow, that's okay. That's a big year.

Preet 11:52
That's a big year. And then in middle of that I went there. I took over so my parents were caring. So my father is the primary care for her along with me. So it makes sense I travel. So they started with a proper injection, or giving her insulin, the doctor trained my father. And then they started understanding at that age on how to manage it. And what happens in India, or maybe similar countries, we were never sent to a workshop or an education session. We were just discharged with a chart. If this was the sugar. This is what you have to give. If this was this reading. This is what you have to give without a CGM. And fingerpicking all the time. And it was a nightmare to be honest, it. I can't even imagine how bad it was. My parents couldn't sleep for weeks.

Scott Benner 12:51
Yeah, yeah. So what kind of insulin did they give her?

Preet 12:55
Okay, so since she's on MD eyes, we take two insulin. So the one which is the Basal is basaglar. And fast acting is fast.

Scott Benner 13:07
Okay. Oh, great. And, and so they just send you home with the insulin do you get? You get a meter I imagined, but is there much else after that?

Preet 13:17
No. So there is just this chart. And they will just send you that if this is the reading, just check three times a day. And if this is the reading, this is what you do. And after that it's all catch up game my parents trying to call Doctor all the time. Sometimes the doctor would answer sometimes the doctor is busy at night. She's studying 300. But they have already given what they were supposed to give. Now they have no idea what to do doctor won't pick up the call. It was really, really bad.

Scott Benner 13:46
Yeah, the I know, I actually know from the podcast, because the people contacting me that Indian food can be really difficult to Bolus for as well. So on top of all that classic foods that you're eating every day are are not easy is that you're finding as well.

Preet 14:04
So basically, when she was admitted in the hospital, she was served like a proper Indian meal. So we couldn't we couldn't see any difference that since she has been diagnosed her diet has been changed. So what the first thing which doctor told us before discharging her voice, just make sure you are giving her sufficient food. Don't try to change her diet. We have to manage it with what she had. I mean, what what is our regular food? But yes, it is it is difficult to decide the right doors with Indian meals. But since now it has been some time a while we have sort of figured it out. And again, my daughter since she is not a foodie foodie, she has a very good portion control. So if it's portion control, it still it's still better.

Scott Benner 14:59
Okay, that's That's great. And so her her eating habits went back to where they were before her diagnosis.

Preet 15:06
Okay, so yeah with normal food attends but since she like, like a crazy person who has never eaten in days if she gets street food and those kinds of things burger and all she would just eat like so initially she didn't crave with all these things so we had not been even going a lot to McDonald's and because she stays with my parents, right so my parents do not eat all of that. So her eating habits were very healthy, home cooked fresh food. And now since she diagnosed this, she craves to eat these things more but with the normal food her her diet is normal back to what it was before

Scott Benner 15:43
you guys aren't vegetarians.

Preet 15:45
No, we are not vegetarians, but we in India generally non vegetarians do not cook non vegetarian every day. So it's like once but now since she has been diagnosed what we have found out making a chicken curry doesn't spike her so a chicken curry with the normal, you know roti, which is which you call as non bread of a throaty, doesn't spike her and we can Bolus her well.

Scott Benner 16:12
So you've learned a lot in a short amount of time to see you. You have more technology now than what they started with.

Take a moment to go to touched by type one.org To see what they're all about. Simply speaking, their mission is to elevate awareness of type one diabetes, raise funds to find a cure and inspire those with diabetes to thrive. They have wonderful programs and services for people with type one. And they put on an amazing conference, which is going to be back this year. And I'm going to speak at it. Check them out at touched by type one.org. I don't think you can get tickets to the conference yet, but it's coming. Check out their programs tabs, find out about their awareness campaign there Bofur cause their dance program dancing for diabetes, the D box they just put on a beautiful golf outing. And of course that annual conference is coming up sometime this summer in 2022. I'm going to be doing the talky talking again, take that COVID I'm getting on a plane touched by type one.org. You can also find them on Facebook, and Instagram. I'd also like to remind you to go to T one D exchange.org. Forward slash juice box join the registry fill out the survey, the whole thing takes fewer than 10 minutes, you'll be doing a great service for people with type one diabetes, and you'll be supporting the Juicebox Podcast, it really only does take a few minutes. The questions are incredibly easy. The whole thing is HIPAA compliant. It's absolutely anonymous. And it may lead to opportunities for you to do other things. If you want other things, you know, in the world of let me think of an example know somebody from the podcast once got to be in a trial for Dexcom adhesives, they Versa thing they got paid for. That could happen to you. You never know he won the exchange.org forward slash juicebox. And if you don't want to do other stuff you don't have to doing the survey is doing a lot. A couple last things. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes. And if you're listening to the show, when a podcast app, please follow and subscribe. Apple podcast app asks you to follow I think in other apps, they may say subscribe, but whether it's follow or subscribe, please do that in the app you're listening in. It helps the show a great deal. And if you're not listening in an app, it's how the kids do it. If you need apps, they should be free. And you can find a bunch of them at the top of juicebox podcast.com If you're having trouble locating them if you're listening on line or something like that, but you should be able to listen to Apple Music, Spotify, all kinds of places anywhere you get audio. Alright, we're gonna get back to Preet. Now. Thanks for listening to all of this little chit chat and for supporting the sponsors. There are links in the shownotes of your podcast player and links at juicebox podcast.com. To touch by type one and all the sponsors

Preet 19:29
Okay, yeah, so that's, that's yeah. So that that's the part of the progression. So we were discharged with these injection needles, and then fee has been basically our bottles. And my mom real my mom just remembered that she said my mom, she has been a teacher throughout her life. At that time, she was not working because of COVID but she remembered she recalled she had one of her colleagues who used to talk about her Her son having type one, and she immediately contacted with her. And to be honest, Scott, she has been our Savior. During that time when we were totally clueless on what we have been thrown into and just a chart and doctor not picking up your call. And she asked us to switch to MDI, first of all, then the normal needle, seven injection, and the switch to the MDI. And then we could call her day or night and she was like, I was in the same situation when my son got diagnosed, just call me any time, so we would call her at 3am. At night, we would call her at four, five, she would call back to check. And she was the one who was guiding us through through this.

Scott Benner 20:49
That's excellent. That's really lucky, actually, to find somebody like that. We were

Preet 20:53
absolutely lucky. She was a godsend. And even till today, we can't thank her enough for that. I'm sorry,

Scott Benner 21:03
this is your hotel on fire.

Preet 21:13
No idea to do it today.

Scott Benner 21:16
Don't worry about oh, my gosh, kind of funny. I haven't had one of these before. You know, I was just looking during that little break. And India is for downloads for the podcast in that region of the world. India has more downloads than any other country. Oh my gosh, really? Yeah. In that in that region, like in China. Saudi Arabia, Saudi Arabia is pretty close to India. But in all that Turkey, Iran all that place where people still listen to the show, oddly, Thailand. But India's Got the most downloads of all those places. So yeah, yeah, I

Preet 21:59
think it's also because of the bandwidth. So I download all your podcasts when I'm connected to my Wi Fi. And when I used to walk, or run, I used to just listen to them,

Scott Benner 22:11
or you're taking credit for most of them. You're saying there's more than you think.

Preet 22:16
I'm so glad because I had been promoting them. So how I got introduced to the podcast, I had no idea, anything like that existed. And I was just looking for to join any Facebook group feeling totally helpless to do and then I came across this diabetes support in their group. I joined that and someone in the comments mentioned about this podcast. Oh, wow. That's I just immediately jumped on. And then from there, it was like back to back listening to the podcast, and we could figure it out a lot. And you know how to be bold with insulin has really helped us with Indian diet and a growing child, to be honest, that has been a savior for us.

Scott Benner 22:58
It's it's amazing to me, I mean, just as I'm sitting here looking at this map, and I can kind of run my run my mouse over, you know, every individual country to see the downloads in places I just never imagined anybody would ever find out about it. It's yeah.

Preet 23:17
I mean, when I started listening to your podcast to talk about sand CGM sand Dexcom. And I used to feel like an alien that, you know, I'm living in a primitive world. And we have a world which has totally moved on. And we are not using any of that for our kids.

Scott Benner 23:41
Please, hold on one second since the alarm went off last time your voice modulated weird through the microphone. I want to see if Jews just stopping talking for a second. We'll bring it back. So it did. So you're saying you don't. So what technology do you have right now?

Preet 23:58
So what happened was that then I started listening to your podcast.

Scott Benner 24:04
Oh, that's so funny. We can hold on a second. Let it wait. It's nice. Nine o'clock

Preet 24:20
in the morning. Maybe they can I had no idea that it didn't do that before suddenly to decide to do it. You

Scott Benner 24:24
would think the middle of the day would be a better time but whatever. Yeah. Yeah, go ahead, please.

Preet 24:31
Yeah, so what I was saying was that when I used to hear and listen to you, CGM, talking about pumps used to talk a lot but Dexcom and I had no idea what is just XCOM. I started reading about it. And then I realized that the CGM is a continuous glucose monitoring device and which can make our lives really easier because I used to I used to be so anxious with Nora that I would just pick her literally sometimes every hour. She's playing. And so before that, I just want to highlight one thing. So what happened? Within a week when she got discharged, she started honeymooning, she went into her honeymoon period. And we had this doctor who had given a chart, that very high insulin doses, and then she would start getting low. And that is when we realized and that our friend told us, that being more is at worse risk than the high. And just don't let her do that. Sorry, no

Scott Benner 26:00
wonder you're fine. So So you started thinking, Okay, well, if we're gonna, if we're going to pick one, we're going to pick higher than lower.

Preet 26:09
Yeah, so one thing was doctor said that as soon as she hits 90, or 80, just mix, so we have something called commercial glucose powder, which comes in the market. So just keep that mix it in water and give her three tablespoons of that anytime she had stat. So what I used to see was when I landed, I found that as soon as she would be ad, my birth parents will just panic, as if she was going to faint, and they would make so much of glucose and give her and she will go really high. Yeah. It was a very bad panic situation that her brain is not receiving signals. That's what they used to say. And she's going to get an and they was they were really scared. Yeah. And so what happened was, so she went honeymooning. And as a result, I had to pick her multiple times, because she would just easily touch 50 In an hour. It was really bad. It was a nightmare. And she was a very active kid. We have just given her something while playing and she is totally asymptomatic when she is low. She has no idea she has gone low and I would be sitting there while she's playing Call her wash her hands precut. So that was a routine and whole night also, we used to do like that just because she had started honeymooning.

Scott Benner 27:42
How old are your parents.

Preet 27:44
So my parents are around 65 and 70. And they had been doing all this like going back and forth ICU staying with her getting trained on this and managing all this all by themselves and learning all this all by themselves and then reaching out to people to understand how to manage it. And then when I landed, I just I just tried to understand this better so that we can make our lives easier because it was not at all sustainable. It was so stressful for all of us. And then I came across your podcast, and I came across CGM. Now, apparently, by that time, we were part of an NGO who were providing some education and some education around type one diabetes. So we were part of that Whatsapp group. Again, they were not the educators were not very easily accessible. But in the group, you could get some suggestion. So when I asked about CGM with the parents whose code whose kids were already diagnosis few years, the educators had their kids who had been diagnosed in 16 years. None of them recommended me to use a CGM. They were anti technology that something which is always touching your skin, it is not good. Many things and at that time, we just have one version of FreeStyle Libre, which was a beta reader and it would just show us graphs. Right. And we didn't have that the Flash version in which I could get the images reading at the same time. And whomever I asked they all were saying that this can lead to infection this can do that this can do that. But I took a decision after listening to the podcast that you know what everyone there is using this and if this is available, I will give it a shot even if I have to throw it later on. I really want to try this and luckily in November so she was diagnosed in end of July and then November they launched the latest I mean the upgraded version of FreeStyle Libre which came with the reader and I could get the real time reading and I just said I wanted this. So we just went and we purchased this now. Now, now, I realize that the reason people are not very open to adopting technology there because there is no concept of medical insurance which covers everything for the people in India, so nothing is covered. No insulin cost is covered. No, CGM is covered pump is of course not covered. So, everything we are paying out of pocket and everyone cannot afford it. So, just to give you an example, and I tried to convert it in USD for you, and the listeners is that I'm we are spending close to 132 USD every month just for the CGM.

Scott Benner 31:07
Okay. Alright, and $32 is $132

Preet 31:10
US dollars. Yeah.

Scott Benner 31:13
Can you give some perspective on what percentage of someone's income on average would that be?

Preet 31:23
Okay, so, so this is close to 10,000 Indian rupees. Okay. And in India, generally, an average household income is close to 15,000 a month. Yeah, a month. And this is 10,000 a month, which we have to spend. Yeah. And even if you're earning close to 30,000, people don't prefer spending money on this. Because just to monitor it. Real time, so even people who are earning a bit, okay, I've seen them going on holidays and spending money but not spending on this. So there is a huge cost and pricing concern. And that has I think made them anti technology. Yeah,

Scott Benner 32:17
I think they're anti spending money, more than anything. Maybe that also some of those, some of those excuses might be because they they're maybe trying to feel better about their decision not to buy it. I would

Preet 32:30
everyone be motivated me, or they talked about skin infection. They talked about something always inside my daughter's body. So no one encouraged encouraged me to be honest, other than the podcast. So I just listened to podcast. And you know, it was so funny. And it's really hilarious. So when you talk about, so I didn't know that there were multiple vendors and in the CGM market, and I would always see that there is this. I mean, in India, we are seeing this round, how come it's a different shape in us. And I would always see why are the type one varying something which is offered different shape, then I realized that that was Dexcom, which is a different shape. And we have a FreeStyle Libre. So not just that. So we had so we started using FreeStyle Libre. And that was a game changer for us. I bet all together a game changer.

Scott Benner 33:33
Pretty soon the Dexcom seven will be out and it it's gonna have a much different shape. We'll be flatter and sort around, like I forget if it's maybe like the size of a quarter, or something much smaller. So the next version is going to look different again. That's really astonishing. You guys can't get Dexcom in India, right?

Preet 33:54
We can't get Dexcom even even we do not have the advanced versions of freestyle. So what happened recently, I ordered a device called meow meow, which can be attached to FreeStyle Libre to make it a glucose information transmitter.

Scott Benner 34:11
Oh, wow. It's like a third party thing. It's not it's a third party

Preet 34:15
thing and it is around 200 USD, I had to get it imported from Europe and there was an AQL and import duty cost and that's another problem with all these devices is there is no subsidy from the government. Nothing is manufactured in India and we have to pay for all of this in the full price of what it is manufactured and sold in other developed countries and then on the phone. I guided and train my father how to activate it. And then we attached it because right now when so now, my daughter she has become a bit independent she takes her small bag with all her supplies, her glucose tablets are read on mobile phone while she's playing in the neighborhood. So my parents, they had to go all the time they used they used to feel so anxious. And now they just call her and she's trained enough, she knows that if she's the slower, she will eat the she will have one tablet, if she is this low, she has to come home. So she is very smart that way. But now that this device at home itself, they will come to know what is she going through and how our sugar levels

Scott Benner 35:29
amazing Good for her. That's really great. And and your parents need some sort of a break. They can't be, especially when you're older. You can't be that nervous and anxious constantly. It's just not

Preet 35:40
obviously I'm I can I mean, I just cannot imagine what they had been going through. And they're they're still because still she's on MDI. So the idea was, the second level of grade was to switch her to insulin pump. So the only insulin pump which we have in India is maytronics. And that is close to 5000 USD, which is equivalent to a car cost in India. Wow. And because of the pandemic, because we need special training for all of that, we couldn't get it immediately. And so that's my plan that once I'm there, I'll switch her to Pam. And I think that will make our lives even more easier from what I hear from the podcast, especially if you have a growing child with growing needs.

Scott Benner 36:29
How? How much of your willingness to take risks like this are big do you think because you traveled to North America? Do other people not get out of India as frequently as you do? Like, yeah, so

Preet 36:44
my job in terms of traveling and consulting is about differential. First of all, I'm a single parent. So my situation is a bit different. I live with my parents, maybe if they're there is a couple one person is not traveling that much than the other person. And it was not just North America, I used to travel globally. And my child was totally healthy. We had everything sorted out her school was nearby, there was never a problem as such, it's this whole this whole pandemic situation with her beating getting diagnosed. We have to I have to reset everything and reset my priorities and what I really have to do and how I should be doing. Yeah, so I'm still thinking and contemplating on on how to make it work.

Scott Benner 37:33
That's really impressive. A lot of people get faced with the same thing you have, and it's hard for them to, to, you know, read, re order their priorities and make decisions. I just did the online just to have like some concept of the money you were talking about a second ago. And you said that a pump is equivalent to a car cost. And you said, you know, 5000 US dollars? It's 376,000 Indian rupees. That's

Preet 38:03
yeah, so we call it three lakhs of 70,000. So it's that much yes, in Indian rupees. And that's the cost of pump plus the recurring cost of the patches. So only very rich and elite people. They use a bomb in India,

Scott Benner 38:21
our cars in free, or cars, not something everyone has as well.

Preet 38:26
No, everyone doesn't have a car.

Scott Benner 38:29
Okay. Wow. That's amazing. I, it's just very interesting to hear the same story from a different location, dude. I mean, like, because your story is the same as everyone else's about Yeah, about being diagnosed and the fear and concern and the learning curve and all that stuff. But then you add these different impactors. And it just seems so much. Yeah,

Preet 38:54
I mean, it just makes it worse, you know, so it was not just so so our journey was so every type one family, they have a type one story and a type one journey, which I think just carries on right. But it was for us, it was not just mentally accepting it. It was about dealing with all this and we are still doing that. So for example, majority of schools do not have a medical room, they do not have a nurse, the moment they'll come to note that the child is a type one, they won't admit your child or they would make you sign an undertaking. If something happens to the child. It's not their responsibility. People don't know about type one. So they often ask or in publicly event teachers they are not trained and they would say why you didn't do exercise properly. Why did you do eat so much of sweet? That is why you got type one and then the diabetes, the diabetics, the diabetes educators, I don't know somehow The doctors do not like to work with them. So there was when we got discharged, if the doctor didn't have time, they could have easily recommended us, like they were these NGOs, who offer education and connect us to someone, they don't do that. So these NGOs, they work undercover, they do not work publicly, you know, so that the doctors, they do not buy caught them altogether. And then we have these insurance companies, which are not covering us, then we have government applying a lot of import tax on all of this, nothing locally manufactured, I mean, I can't even tell you like fiasco, it's an international insulin, and we are paying a lot for that. And that's why people, they don't give full quantity of insulin as well, those who cannot afford that much of money. So there are a lot more struggles than just me thinking about how best I can manage nor there are a lot more things which we have to constantly think and struggle and that makes it really worse

Scott Benner 41:05
course. Do you have interesting, you may have absolutely none. But do you ever consider leaving India moving your family? Would your job allow that or is your job based in India?

Preet 41:18
Okay, so, um, I have been traveling. So before that, I was so when moved was a baby, I was in UK with Nora. And since I was single, and it required travel, I just thought it was intentional for me to be with my parents and be there and things were really good, because if you have some help from your own people, I have my sister and brother in law, by the way, also in India, who are married and they they all they are within India, but not in locally to us in India. So they are also have good extreme health when we want. So I had a better support system. And that is why I did make all of that decision. Now, like I said that, first of all, I was not prepared for this pandemic. Second, I was not prepared for news condition. Now, I have to reset everything, I have to consider a lot of things. And what I feel is, let me not make a decision in hurry immediately just because the situation is not as it was supposed to be, and maybe it will get better. But when I come to these countries, and I see insurances fully covering everything, to be honest, now that she is type one, I feel living as a single parent with daughter in such countries will be much better.

Scott Benner 42:42
No, I I imagined you might be thinking about that. And to be honest, I I know it's a hopeful idea that you could go find a better situation. But I also find it sad that you'd have to leave your home and your family just because yeah, these things are available in other places. That's

Preet 43:01
exactly. So it's about what to choose, shall I choose a better environment where Nora is always busy with her loved ones? Or shall I choose somewhere where I'm not taking? They're not worrying about the expenses or any other thing? But then she doesn't have all of them? So yeah, what is better for her and me that is something which I have to decide.

Scott Benner 43:26
That would be a big decision either way. I was researching a little bit before you came on and about the prevalence of type two diabetes in India, when you mentioned that your mom had it. It's much more common in urban populations than it is in Indian rural populations. But how is it managed? Because if there's such a misunderstanding of type one, the way you described, I wonder, I wonder how they like How was your mother managing? What do they tell her to do?

Preet 43:57
Yeah, so luckily, her is not really bad, because so she just takes one pill every day. And she's way under control. So much. Yeah, in India these days, older people getting tired. Type Two is very common within the urban population primarily because of high stress levels. And she walks regularly and it's very easy. You know how easy it is to manage type two, but they often confuse type one also with type two. That that's the thing. So my for my for my mother managing is really easy, because it's not really bad. We diagnosed it quite early and with lifestyle changes. It's all under control. Gotcha. Yeah, it was. It was only during when she was in ICU with Nora and they were going through all this stress, it became worse. And during COVID Also when she had COVID Her sugar levels

Scott Benner 44:56
that she hasn't changed her. There's no real way for her to change her. diet, your mother is that right?

Preet 45:02
So just to let you know that if the basic Indian diet is very healthy if you eat it balanced, so there is a bowl of lentil curry, which is protein, then we have a mixture of vegetables that makes half of your plate, then we have yogurt, then we have a lot of salad. And then the main content would be roti, which is like pure carbs. And if you just eat like one or two, it's the Indian meal is very healthy. And it is so if it's all about portion control, and so we don't make any diet changes for sure. And we manage it with that because we will anyways not into heavy eating, eating fried food that is not regular Indian meal. So my parents used to always eat very healthy freshly cooked meal and sordid mode all the time.

Scott Benner 45:58
Gotcha. Oh, that's excellent. Oh, good. That's, I'm enjoying learning about this. My My only understanding of India is through my, my my my daughter's friend who just comes home once a year and she says MR. BENNER, I fit in the hole this week. And that's, that's pretty much my whole my whole. She She always talks about going home to her her grandparents. And okay, and she's like, I had to go to the bathroom in a hole. And I'm like, oh, like, Okay. And so I have no, like, I can't picture your living condition. I can't picture your cities, like in my mind to Kelly, my wife has been once to for work, but like, I just don't I don't have enough of and I imagine a lot of people listening don't have a lot of context for it as well.

Preet 46:43
Yeah, yeah, no, no. It's pretty modernized. In terms of the lifestyle and the way we live. But when we have to deal generally beyond just the lifestyle and living, then there are a lot of gaps, which are the ones which are highlighted to you.

Scott Benner 47:00
Yeah. And there's a is there a fairly big disparity in education as well? Like, is it is it a very half and half not society? Like, do you are you either doing well, or you're not? Is there no, like middle class? Or is that no, no,

Preet 47:15
actually, in India, the majority is middle class. Class is the biggest okay. So they are the high taxpaying class. So that is the biggest class in India,

Scott Benner 47:27
I say, I say, what kind of work is available for people, and there's no medical insurance available through jobs or through government? Is that right?

Preet 47:38
Yeah. So there is a basic medical insurance, but that's more for those who are poor, there is a public health system, but people end up going to private hospital more, because the public health system is not very good. So they have something in place, which is generally used by people who are poor, because the facilities are not that great.

Scott Benner 48:02
I say, okay, so So the government has something in place, generally used by the poor class, and then people who can afford it go to private institutions and private hospitals, things like that. That's correct. Yeah. Yeah. But you're always paying for your medications. In counties

Preet 48:19
these days, it's the medical insurance there only covers the hospitalization charge if it is more than 24 hours.

Scott Benner 48:26
Okay. All right. Yeah. Interesting. That is

Preet 48:30
what medical insurance means there. And there's

Scott Benner 48:33
no private insurance, like there's nothing that you could buy on top of all this to help you.

Preet 48:40
So all this medical insurance is a private medical insurance plus or a corporate medical insurance. So it's not a government medical insurance I'm talking about so we have to take and I'm paying a premium for that. And then if you need to there is there are a few companies who have come with a type plan in which they would only cover the hospitalization because the medical insurance they would wouldn't even cover hospitalization for pre existing conditions if slot for a type one patient. But again, they don't cover everything and everything is like a private everything is private insurance, then there's government insurance is generally used for those who are

Scott Benner 49:19
poor. I see. What what do people people who can't afford insulin? Do they just do they just the eyes like what is the what happens to them?

Preet 49:33
Sorry, sorry, what's the question

Scott Benner 49:34
when when someone just can't afford insulin? What path is there for them to?

Preet 49:40
Oh, yes. So yes, so they do insulin rationing? First of all, many of them don't even so if you're talking about really poor people. I don't type and I've never seen an urban population. I'm not really sure. Why is that um, So they will. So the moment it gets diagnosed, they do insulin rationing, so that that means their lifespan reduces because their sugars are not well under control. But we do not have a lot of research and study on the lifespan of Indians with type one diabetes. We recently had a report published with a sample of 40 people. And I think those people managed it well, that is why they could live so long. They still do not have any data for those who cannot manage it. Well, all I know is they do insulin rationing. They rely on NGOs, they rely on public health system to get some subsidized insulin and things like that. So I really feel like doing something and working towards that, that at least every child now, since we started using CGM, I started feeling it was so cruel of me talking and fingerpicking node all the time, I used to feel so bad her fingers used to get swollen by the end of the day. So many times we used to break and I wish I can provide a CGM for any child who is diagnosed. I know as we grow big, we have a better control and we can manage even with the picking and meds. I know Jenny does an MDI herself. So as we grow, we have a better control. But for kids, it is really and the parents, not having a CGM is is like, you know, walking in a dark room and having no idea what's going on.

Scott Benner 51:28
I understand what you're saying. Well, that's a it's a powerful feeling to know know how hard it is, and then be helped by it. And then look over and see all those other people who don't have that stuff. It's I know how overwhelming that can feel. Do you feel lucky? Do you feel guilty at all?

Preet 51:46
I feel lucky. First of all, it's just not that I could afford it. I could take a chance because everyone was saying this technology is really bad. So I'm, I'm really lucky that I could do it. I'm really lucky, I can afford it. But at the same time, I sort of feel it is my responsibility to educate people more about CGM in India, which I do a lot. But I really wish if I can sponsor it as well, for especially very young kids under five who get diagnosed. It's it's really it's really very harsh.

Scott Benner 52:21
How is Nora doing? Does she know anybody who has type one or she the only one?

Preet 52:27
Oh, so she didn't know anyone when she was Typhon. So what happened was no. You know, these young kids, they are so resilient, so brave. So when she was taken to the ICU, she was packing all her soft toys. So it was like a holiday in middle of pandemic for her. She had no idea what was going on. I couldn't I was here I was really scared on how should I even face her. She's an ICU, she there must be so many things attached to her and that I called her she was eating her meal because she was always very hungry. And she was saying, you know, Mom, this meal is just like a restaurant. It's so tasty. I love this place. And you don't worry. You don't have to come all the way I'm really fine. You don't have to come we have managing it well. And she would ask her grandparents to leave as well, that she would stay here by herself. So she has been really brave throughout. But what we realized is that this whole insulin and all that is a high profit making game for the medical companies, pharma pharma companies out there. So as soon as we got discharged, we started roost, my parents started receiving phones from all these agents who wanted to offer us fiasco and basaglar at different discount rates. Okay. And these phones were continuous. And then when we wanted to switch to MDI, I don't know how the agents came to know so many came home. And they were like, We don't have time. I mean, these people don't have empathy. Right? They they are just salespeople. Yeah. So what they did by the move was great, what they did they literally pinned down nor to teach my parents how to give them their the pinto down. So many people, they held her. She was screaming, leave me Leave me. And they just did it. And my parents were like, What the hell is happening. And after that, she really went in trauma for a few days. She had not seen anyone with type one. She had no idea why this was happening to her. But then, so every time we would give her MTI my parents had to struggle they had to hold her before that she were taking she was taking like a proper injection all the time and she was totally okay with that. And then we had to connect her to my mother's colleagues, son who would show see see nothing is happening but she would Don't listen to anyone. And then but so gradually she came out of the drawn line, it was very, very difficult for all of us. So I was not there and I was requesting begging them to at least let me quarantine at home. If he will see me I'm there, she'll start taking meds. But they just wouldn't understand the authorities there. So I would be on the video call. And then I started looking for YouTube videos and all that. And when I reached her, I started her showing that she is not alone. There are people out there who have see such a small girl has got such a small girl. Then gradually, yeah, she was over. And she was anyways very, very, very brave with this whole situation, just barring that little trauma period. And she in between, she used to ask that, why I have type fun why no one has type one. And then one day, I just I was checking few videos on iPad, and I saw her recording her own video, in which she's showing her CGM. And she's saying I have a superpower. And this is my superpower. And I am living on MD eyes and she just made a video of her own. And I was so inspired to see that amazing.

Scott Benner 56:17
That's really wonderful. She's resilient is a there's not enough of a word for her.

Preet 56:24
Yeah, I mean, we have been very lucky with her managing all this hate

Scott Benner 56:28
the between like the sales pressure and the being pinned down to get injections is a lack of compassion. Is that a cultural issue?

Preet 56:39
So I think there is a training issue. These salesmen are not trained to be compassionate they are they're not selling pens, or you know, any other electronic device they are selling, which is a medical gadget, something related to someone's condition, they don't have empathy at all. I think there is a huge training, training issue training gap. And then my mother complained about them to the area manager. He really apologized for it afterwards. But they there was a lot of pressure on the salespeople to meet their targets, I think. So it's lack of training, meeting targets. And yes, there is some cultural cause some culture as well, because if you see policy policy or the government officials, they are not they're also not trained enough to be more compassionate towards people

Scott Benner 57:33
and even just general understanding because you know, about a half an hour ago, you said that even doctor said like what did you do to her like you gave her Why did you give her so many sweets? How did she get this like that? That's a real misunderstanding of type one,

Preet 57:46
not the doctors, the teachers and normal people and doctors definitely understand. But yeah, but but the regular the teachers and the normal people. That's a very common question for no wrenches. She knows how to answer that.

Scott Benner 58:02
For her. She's really, really something else. And now she's just seven years old still and only been at this for a year.

Preet 58:08
Yeah, she has been seven year old. She has been out and she is managing she sometimes she's scared mama, what will happen when the school will reopen? I don't know how to do all this, then we tell her that don't worry, we'll be there with you. So she has something going at back of her mind. But now she's managing she knows what gives us gives her spike. So sometimes if she's eating something, she would say, Are you sure we have Bolus Jennifer this or shall I just stop eating now? So she's like that? And yeah, she she's she's managing it really well, at her level

Scott Benner 58:44
thinking about it at a higher level too. That's excellent. How long is the school been? Like? She's Are they are they going to school remotely? Because of COVID? Or?

Preet 58:54
Yeah, so how her school has been virtual since one year. And that continues for now. But if the situation improves, they will start reopening it. So we have no idea when they will open it. So right now she's on virtual schooling. And by the way, when she was in ICU, she used to attend all her classes from there as well. And she would educate everyone that I had been. We had no idea that she was listening to all the conversation we never told her. And then she would say, you know, ma'am, I'm an ICU. I've been detected with type one diabetes. And then she would show man I want to say some things. This is my CGM. This is how it works. She would keep everything with her. Just to educate everyone.

Scott Benner 59:41
It's great. That's really something she's really special. I I don't know my kids were six years old. I don't think they could have done that. That's

Preet 59:49
exciting. Suddenly, I don't feel I don't know. Suddenly she has become so mature for her age. I mean, I can feel so much of difference. She is understanding things on her own. She is no more that small baby you know before whom she was before just think that just playing playing playing not even eating properly

Scott Benner 1:00:08
right has she has her body responded to the insulin she's not thin any longer.

Preet 1:00:12
Yeah, so she's not cow she was before. Yeah, yeah, but she was overall she has been like her her own. I mean she's not a what you call it up? She doesn't have a lot of fat so she's quite athletic. But she's not skinny skinny how she was before?

Scott Benner 1:00:30
How does how does? How does management work for diabetes like here? Once you have type one you see an endocrinologist every three months, they start checking things like celiac and thyroid issues and is all that happening for her.

Preet 1:00:44
Yeah, so we are doing that now. Since everything is private. You have to pay for everything. It is not mandated. But we do for note many parents don't do it. We are regularly doing it for note every three months. Yes. And again. That is like that is expensive. But we are doing it.

Scott Benner 1:01:04
Do you know what he wants? He is

Preet 1:01:06
so recent even see was 6.1

Scott Benner 1:01:11
Wow, that's really great. It's amazing. Is she and she that's a combination of her. Your parents? Sometimes you do you help her win remotely with diabetes? Or do they handle it all locally? Like you're you're not home right now. For example? Yeah,

Preet 1:01:27
to be honest, it's all my dad. He is like he just makes sure she's not spiking or she's not going under all the time. I mean, it's teamwork with dad and me but I so whenever i i Keep on researching a lot. I listen to this podcast, and I do a lot of so whenever I learned something, I sort of educate them and then together we decide how they should be bolusing like when when they're eating something fried and how to Bolus for fat as well, which is in food. So those things I keep on educating and by the way, it has been one year and she's still honeymooning.

Scott Benner 1:02:01
Oh, still, yeah, yeah. What? How much Basal insulin does she get a day?

Preet 1:02:07
So her Basal insulin, I'm not sure. If I mentioned I'm telling it in the right unit, but she uses MDI, so her Basal unit is five units.

Scott Benner 1:02:18
Five units a day. Yeah, yeah. What does she wait, you know? Sorry. How much does she weigh?

Preet 1:02:24
Oh, yeah. So she is 23 kgs.

Scott Benner 1:02:29
I'm just doing my real quick. Okay, in pounds and pounds translate. It's about 50 pounds. 23 kilograms. Okay. And she's using five a day. So. So if she was on a pump, her Basal rate might be around point two. Yeah, yeah, she's she's definitely honeymooning still, huh.

Preet 1:02:49
Yeah. And the bonus, the bonus, which we give obviously depends on what she is eating. But for a normal diet. It's just two units of Yes.

Scott Benner 1:02:59
Okay. Yeah, she's used that a little bit still. That's a Well, that's good. It's nice for her to get a chance to. And your father? Is your father ready for the idea that when the honeymoon ends, the amount of insulin will increase?

Preet 1:03:13
Yeah, we all know that. And sometimes, maybe she has got some allergy or something. And suddenly, we have to give some more and we are like, Oh my God, it seems like this is ending. Honeymoon is ending. We all know that. This is going to end someday. But we really want this to continue and stretch for as much as it can't work

Scott Benner 1:03:32
out. Well for you right now. For certain. Yeah, no. any brothers or sisters for Nora?

Preet 1:03:38
No. She's She's my when are you tired? Okay.

Scott Benner 1:03:41
Wow. She's gonna Well, you know what, she's probably super, you know, responsible and mature because she's around older people most of the time, right? So she's Yeah, I think she's gonna be like a little 70 year old lady.

Preet 1:03:59
Exactly. She just talks like my mom and dad. So I'm like, I'm living with 370 year olds.

Scott Benner 1:04:08
It's amazing. That's very funny. Oh my gosh, so does she have I mean, I guess she's so young, really. But to talk about like, I Oh, my gosh, how much time has she actually spent may reframe my question. How much time has she actually spent in school before COVID hit and knocked her out? She must not live in been there for very long.

Preet 1:04:33
No, so she just finished her. I think three school and she was about to go to the proper school. And since then we have COVID

Scott Benner 1:04:44
Oh, she's never really gotten to do it at all. No, no, I see. Oh, that's terrible. Do you think there's any sign that they're going back or right now they're not talking about it.

Preet 1:04:54
So they have opened for senior classes I personally feel is since till the It is dangerous, there is no point in opening it for such young kids, because they have not even started rolling vaccination to kids who are 1111 and above and even this vast population who are who are still not vaccinated. So I personally feel that making them vulnerable especially with the strains, which are impacting kids more now should not be done at all till till this is gone. But then there is too much of pressure sometimes from from the parents also. But I So, what happened is they're still anticipating strain three specially after the festival time. So right now, it's festival season in India. And because people get together a lot during this time, and then there will be winters kicking in, they do anticipate a strange reason, at least not this year. But let us see, I really I'm not very comfortable sending her till till we have this thing in place, like getting really worse. And if majority of people are not vaccinated.

Scott Benner 1:06:02
Yeah. Well, that makes sense. And I'm assuming too, this causes a pretty big issue for childcare in general, because their parents were expecting their children to be at school, another home.

Preet 1:06:14
Yeah, I think that is the major problem and why they are pushing across countries, not just in India, to reopen the schools and send them especially as a childcare problem. But But yeah, I think it's so maybe now I'm a parent of type one. So I tend to everyone, I would have never known that this world existed, till node got diagnosed. And this has opened a different world. I have changed as a person, I think differently. So for me, no going to school and being exposed to COVID. All that probability does not make me comfortable.

Scott Benner 1:06:54
Well, Arden has a cold right now. It's not COVID. And I've been fighting with her blood sugar for two weeks. So she know she's 17

Preet 1:07:06
Oh, wow. Yeah, I don't know. I've never met her. But it feels like I know her forever. So I introduced Scott and Arden to Nora and my parents. And they were so happy to know that that there is a father who has dedicated everything just to look after her child. I mean, his child and my father was so inspired. And I think he's just trying to do that.

Scott Benner 1:07:34
That's wonderful. Thank you. I mean so much to me, I you making me feel like squishy inside.

Preet 1:07:43
didn't do that much. Just to take care of that child. I can. I can at least put her put her on CGM.

Scott Benner 1:07:53
Sounds like you guys are doing a really fantastic job. I mean, honestly, that's, I don't I can't see what else you could be doing right now. You know, you just seem like you're doing everything you could be.

Preet 1:08:04
Yeah, I mean, we saw when she got 6.1. My father was happy that I told you know that those people who are on pumps here, they get just a normal human sees, which is in fives like 5.25 5.3. And he was like, really, that means I need to work harder. I didn't work hard enough.

Scott Benner 1:08:22
Given your data job in his later years,

Preet 1:08:25
maybe we actually tried to figure this whole max of Indian food, the boilers, how to make it work with MDI, and the nose craving every weekend craving for something really homemade. But sweet.

Scott Benner 1:08:36
Yeah, that's really great. And you're in the you're in the private Facebook group for the podcast, right? Yeah, yeah. Do you find that helpful?

Preet 1:08:44
Yes, yes. So this these groups when parents discuss their issues, and then in the comments, actually, even the comments are very helpful on how different people are managing it. Those are really helpful.

Scott Benner 1:08:56
Good, good. I'm glad. That's excellent. Well, I really appreciate you coming on and doing this with me. Is there anything that we haven't talked about that you wanted to?

Preet 1:09:05
Oh, gosh, there are so many things, which are never ending with such situations such a diagnose, but I think we have covered too, I really wanted to highlight how things are in countries like India. So it's not just accepting your child has this condition, you have to fight socially, culturally, monetarily. There are many aspects to it. And I think which everyone deserves to know is one thing, which I just fail to understand, Scott, as we all have been advocating insulin for all. And countries like us, all those who are very high on human rights, who talk a lot about human rights. Despite knowing all this, How can everyone be so blindfolded and not make a difference. I mean, I just feel to understand that

Scott Benner 1:10:03
you so why is it not something that people fight about more of the price of insulin?

Preet 1:10:08
No. Why is it not why the price of insulin is still so expensive and why it is not like a regular basic drug available globally worldwide right

Scott Benner 1:10:17
now I am actually, I just scheduled an interview with a gentleman who's trying to bring a law, a federal law to vote about that exact same thing. And I haven't spoken to him yet. I think he's going to be on in about two weeks. So I'm hoping to find out what he's doing. It is really something I think what happens is, is that for a lot of people they have in America, they have private health care insurance. And so the price of insulin to them isn't very great. And so there's, so you have this big path of people, this big swath of people who aren't impacted by the price of insulin, and therefore, it's not a fight that they, I assume that they feel needs to be fought, and they don't see how it impacts the people who don't have that insurance.

Preet 1:11:05
But, but but my thought is why to even fight for it. This is a hormone which is generated inside the body, which is available outside, why don't why doesn't who, who and all these work with these pharmacies, we know these are the pharma companies and the insurance companies, just in few highly developed countries doing it, we know how to solve it, you know, just let it locally manufacture everywhere. Why to still make it like a high profit margin when we have other drugs? Which we can do that? I mean, I still don't understand why do we need to fight for it? That's the thing I just don't understand. I

Scott Benner 1:11:44
agree. That's a would seem like an obvious statement is I mean, yeah, seems like obvious. Yeah. But you asked and answered it in the same pot is people are making money off it. And it's easy to say the pharma companies are making money off it. But there's also in America pharma, pharmacy benefit managers, which are basically like middlemen that make money. I mean, you're talking to UFC salespeople who are trying to push it over there, because they, you know, that person gets a little piece of that money, the company gets a little everybody's getting, everybody has their hand in the, in the pot, taking some out. And you're, you're gonna have to get to a point where, like you said, like, some larger entity steps in. And that's something but I think these incidents are also covered by, you know, patents, you can't just start making it on your own, you'd have

Preet 1:12:32
to, I know that that's the thing. So like, in Canada, it's patent free, right? They, I mean, if Canada can do it, why can't other countries do it? It's just few countries who are impacting this, across the world, people are dying because of this. And we know the cause, like you mentioned all that. We know everything. I mean, why not make it obvious. And you would fly to in fight for it and just do it?

Scott Benner 1:12:56
And you would think to even like, specifically in India, there must be pharmaceutical companies there that could take this up. And I guess it's it's about, I guess, they'd have to be subsidized by the government, like, some people aren't going to just start making a thing if they're not going to get paid for it. So somebody has to step in and say, Look, we'll pay for it, and then we'll give it to people cheaper, like the government would need to do that.

Preet 1:13:19
Yeah, they'd have to be worth their taxes, or middlemen, for sure. I think it needs to be a coordinated effort. But at the first stance, maybe the the countries who are manufacturing this in bulk across, have an ERP and charging a very high patronage for that. I think, once we start from there, it will come down that that's what

Scott Benner 1:13:40
you're gonna have to find. There's going to have to be an entity that's large enough and strong enough and influential enough that has the nerve to just step forward and say, We're gonna fight for this now. And, and hopefully that could happen, but it does. It does seem like it does seem like something that is more of a dream than a reality. But you

Preet 1:14:01
know, yeah, I mean, for for me, in a country like India, educating on CGM where people cannot even afford insulin. So my first step is to make sure a good insulin like fi ASP is available at least. And they're using it in the right portion. They're dosing it right to begin with, even before touching the CGM. Right,

Scott Benner 1:14:23
I agree. Well, I prayed I really appreciate you doing this very much. This was a wonderful way to spend this hour so thank you very much.

Preet 1:14:31
Thank you so much, Scott. And keep on inspiring say my hi to Arden

Scott Benner 1:14:36
Oh, I thank you and and please tell Nora that the guy on the podcast says hello.

Preet 1:14:40
Oh, she will be so happy to say hi to Nora. I'll make her listen.

Scott Benner 1:14:44
Oh, that's excellent. I'm I want to say hi to your father and mother to like, I think what they're doing is really astonishingly brave. Especially

Preet 1:14:53
really good. I think I thought I was thinking was that you know if ever you want to interview a senior primary carer Like, who was about 60s? He can be

Scott Benner 1:15:02
the one he would know, huh? Okay. Thank you very much. Thank you so much, Scott. Have a nice day bye a huge thanks to Preet for coming on the show and sharing her story. I also want to thank touched by type one and remind you to go to touched by type one.org. And to find them on Instagram, and Facebook. Also find my private Facebook group Juicebox Podcast iPhone diabetes. Don't forget the diabetes pro tip episodes are available in Episode 220 where they begin or a diabetes pro tip.com and juicebox podcast.com T one D exchange.org. Forward slash juicebox. Take the survey support the sponsor support the show. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast