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.

#672 Defining Diabetes: Antibody

Scott and Jenny Smith define diabetes terms

Scott and Jenny Smith define diabetes terms In this Defining Diabetes episode, Scott and Jenny explain Defining Diabetes: Antibody.

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

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 672 of the Juicebox Podcast.

On today's episode of The Juicebox Podcast, Jenny Smith and I are going to define antibodies, auto antibodies, antibodies, auto antibodies, antibodies antibodies WHAT THE HELL ARE antibodies antecedent here we go please remember while you're listening 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. We're becoming bold with insulin Are you a US resident who has type one diabetes or is the caregiver of someone with type one because if you are, you can support the T one D exchange and research for type one diabetes by going to T one D exchange.org. Forward slash juicebox. When you get there, join the registry fill out the survey the whole thing takes fewer than 10 minutes and you are going to help people with type one. You're also going to support the Juicebox Podcast. I don't even want to stop talking now. My voice sounds amazing in my ears. T one D exchange.org forward slash juicebox this episode of The Juicebox Podcast is sponsored by us med us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor from the pod dash, the number one fastest growing tandem distributor and the number one rated distributor index. com customer satisfaction surveys. US med is a place where you get your diabetes supplies from most of us use them right? Most of us are using some sort of an online Wait a minute, are you not getting your supplies online? Okay, hold on. First of all, it's super easy to get your supplies online. You just are you're not doing this. Alright, hold on a second. Let me get a sip of water I gotta explain this whole thing to you. So we used to use another company, we've actually used a couple of them. And in the past they've been you know, spotty, let's say spotty in their customer service. But us med prides themselves on their white glove treatment of their customers. US med has an A plus rating with the Better Business Bureau and they want you to get better service and better care than you're accustomed to getting now. US med always provides 90 days worth of supplies and fast free shipping. You can get a free benefits check right now at us med.com forward slash juicebox or by calling 888721151. For us Medicare is everything from insulin pumps and diabetes testing supplies to the latest CGM including libre two and Dexcom G six. They accept Medicare nationwide, and over 800 private insurers. This 888 Number is dedicated for Juicebox Podcast listeners. Call now 888-721-1514 Get the service you deserve. Get your supplies without a big hassle. US met us med.com forward slash juicebox. Look, everybody these supplies are going to be common forever and ever. I'd love it if you had it set up so that it just happened and you didn't have to think about it. That's how we have it here. And it is a real it's a weight lifted. It's another thing you don't have to think about. Let us med think about that. You go live your life we've talked about antibodies in thyroid episodes. Yeah, and other places. I am told by Isabel who helps me run the Facebook page that people are confused about antibodies. And she said to me, please do a defining episode about them put it in one place where they can find it. It's easy to understand. And I said okay, as well. I will absolutely do that. Now here comes the problem. I'm still I still get a little confused as well. And I know it's just because I haven't looked at it closely enough. If you said to me right now, what's up? I'm not gonna look at anything. I'm not just gonna go off of what I remember right? Then you're gonna you're gonna tell me if you said to me antibodies in conjunction with type one diabetes

I would say something like, your body has antibodies that are meant to do stuff, fight illness or disease or whatever. And if you have type one diabetes, or if you are predisposed to type one diabetes, there are antibodies in your system that are likely to go get the beta cells in your pancreas at some point, and they don't belong in your body. And I don't know if that's right, that's literally the best I can conjure up out of my mind. Just told

Jennifer Smith, CDE 5:40
me, No, not, I mean, not really wrong, I think it's the way that you think about it or see it, it's, I mean, an antibody in general, whether it's for diabetes, or thyroid or other, you know, issues. an antibody essentially, is just a protein that your immune system uses to essentially take care of a foreign object via a virus or, you know, bacteria or something that's potentially harmful, right? I mean, that's, that's the gist of an antibody. But in someone specifically with type one diabetes, and something in the body triggered an immune response. And so your body, unfortunately, has identified beta cells as the foreign object. So your body produces antibodies to take care of this foreign object, which technically isn't foreign, but for some reason, the body now thinks that it is. So the antibodies are I mean, they're there, they would be identifiable in the bloodstream in a in a blood draw, if you had antibodies that were specifically attacking the beta cells, right. So we can do blood draws to test for antibodies, we can do blood draws to test for insulin antibodies. I mean, one of the very well known ones that most people definitely have done at diagnosis is the GAD antibody. And then, you know, if you've done any testing, or had any family members who have done testing through like TrialNet, or any of those types of places, there are, I think, at least two other antibodies that they're kind of looking for as well, to identify, so in general, an antibody is just it's really supposed to be there. That's something that your body uses. Unfortunately, it becomes something not great, because of the way that your body is identifying the beta cells, which is now seeing as like a foreign invader,

Scott Benner 7:49
okay. So for auto antibodies are markers of beta cell autoimmunity and type one diabetes isolette cell antibodies ICAA against cytoplasmic proteins in the beta cell, antibodies to glutamic acid, well, the carbo laisse which that's the GAD 65, right? Insulin insulin auto antibodies, which are IAEA, and I A to A to protein tyrosine, phosphatase. FOSS. Wow, okay. All right. So not everybody has these, the these like, like, like, let's just take gad as an example, right? Like, if I tested the population, most people would not have that antibody.

Jennifer Smith, CDE 8:36
They shouldn't. I mean, honestly, if you're testing positive for the GAD antibody, it indicates an immune attack, which is really points to type one diabetes specifically. Okay, so general person should not have gad antibody.

Scott Benner 8:50
So if you have it, where do you work? I don't understand where you get it from? Like, how does how does one body Jenny that are we outside of your depth?

Jennifer Smith, CDE 9:01
I don't know. I think if that could be, I don't know if it's out of my depth. It's certainly out of the realm of

Scott Benner 9:09
understanding at this point.

Jennifer Smith, CDE 9:11
I think it's to my like, limited explanation. It would be the reason that there's no

Scott Benner 9:18
cure is because we don't know how that happens. We don't

Jennifer Smith, CDE 9:21
Okay, right. I mean, some other really, really intelligent scientist and because sure could say hey, we're pointing things in this direction or whatever. And I'd be like, Okay, well, that's really fancy.

Scott Benner 9:35
So for reasons that may be at this moment, beyond understanding as a person can develop one or all of these antibodies, and then what you're waiting for next, it's the other shoe to drop it's for you to get ill sick, stressed something, your immune system to be like alright boys, go attack those invaders and they run right past your Your virus and go right into the pancreas and go after your beta cells. And that's

Jennifer Smith, CDE 10:04
why there are and for the GAD, I think I was actually wrong. I think that there are I think there are other autoimmune conditions if I'm not incorrect, I think thyroid, you may have gad antibodies present. Okay. And I am I think there's another autoimmune disorder if I'm correct, that that may be something that would show positive, I would have to again, look that up. But I'm, I'm quite sure gad is also present for thyroid. So anyway, um, you know, in terms of a virus, that's why many people believe that people with type one may have had a virus, which was like a switch. It's like a light switch. i That's kind of how I think about it. My brother probably had the same virus that I had, if the reason that I have type one is from a virus, I don't know why I have type one, I'm quite sure that my brother and I living in the same house probably had the same viruses, why my body decided to interact with that virus and the switch turned on and decided to flip and say, Okay, we've taken care of this. But now we're also seeing these body parts or these pieces of the body of the beta cells as foreign objects to. So why one person versus another? I don't know.

Scott Benner 11:31
Yeah. I would again, I think I've said in other episodes, I don't know for certain, but I would bet money that Arden had Coxsackie virus, and then she got type one. I've heard a lot of people specifically say Coxsackie. And then type one. As a matter of fact, we had the CEO on a prevention bio. Hey, it's Scott, I know I put the ad at the beginning of the episode today. I tricked you a little bit. But I still need to pop in and tell you that US med offers a free benefits check and you can get it at us med.com forward slash juice box, or by calling a special number just for Juicebox Podcast listeners 888-721-1514 us med carries everything from your insulin pumps, to your diabetes testing supplies, go check them out, who was on to talk about Tomislav, which I always mispronounce. And later I will get a message after this goes off where they say you've pronounced it wrong again. But I know that he was talking about how one of the ways that he thought you could significantly cut down on type one diabetes is to inoculate people against coxsackievirus. Yeah. And he said so that to me, I mean, if someone's saying that, then they've seen enough impact that way, but they're saying like, don't get me wrong, like Coxsackie doesn't make type one diabetes. Right. But if you have these auto antibodies, which I'm assuming Arden had, then you get Coxsackie. I'm, I'm thinking what he was saying was that there's more frequency to go from a person who has auto antibodies, who gets Coxsackie to type one, then there is a person who has auto antibodies, and they get the flu, and then they go to type one, etcetera, like something like that. Right. So yeah, there's probably a mechanism in there that I mean, we don't understand. Maybe somebody else does, but and the Coxsackie

Jennifer Smith, CDE 13:31
is certainly one that's well identified. I mean, as you said, you can look for it, you can easily find multiple noted references to Coxsackie and type one. Yeah. But it is also a more of a childhood disease illness. Right? Which then also leads to the questions of, well, if an adult didn't have Coxsackie, then why all of a sudden, is this random adult who has no family history of type one at all? Right? Why is it all of a sudden there?

Scott Benner 14:06
Right? Well, so is it. So let's keep talking about that for a second. It's possible you could have these I mean, it's possible that there are people who live their entire life with these auto antibodies and never get type one diabetes, right. And so, I hear from, I mean, this podcast has allowed me to talk to so many people, that there's no longer an age that I think you can't get type one diabetes after, you know, like, I know that people used to think, you know, it was kind of like that weird slippery slope of, you know, the JDRF was the Juvenile diabetes Research Foundation. So people know that it's juvenile diabetes, you can only get it if you're a kid, obviously wasn't true. But even in my like, you know, uninitiated understanding, if you would have found me before Arden had type one I would have told you like if you can get it like 30 years old, you're not going to get diabetes like type one. Right? And that's how people would think about it in the past.

Jennifer Smith, CDE 15:05
Yeah, I mean, I've worked with people who've been in their 60s, upper 60s, I have one woman who was 71 when she was diagnosed with type one. So, you know, there's still certainly no age that it is not possible.

Scott Benner 15:21
Right now, I think it's point, I want to say 73 is now the oldest person that I've interviewed. Really? Yeah. But I mean, what the hell, you know, right. And talk about, you know, thinking you made it mean, really,

Jennifer Smith, CDE 15:37
this far in life. And this is what I get handed now, like, what

Scott Benner 15:42
the heck is done? You know, I thought I was all good. So I think that, if I go back to what Isabel saying to me, about that people asked about this all the time about the antibodies and not understanding them. That is what I want them to leave this episode understanding is that, you know, first of all, you didn't do anything wrong. Right? That and I think that's, I mean, if we could kind of shift gears away from a more medical to maybe a more psychological for a second. You didn't give your kid type one diabetes? Like, No, you didn't give it to yourself? It's not possible, you know, like, you either have these, these antibodies within your system, or you don't. And like Jenny said earlier, modern medicine can't tell why at this point. And if it was just that you watch the prices write too much, or you you know, you know, or you had too much ice cream or like something like that the things that people knee jerk worry about when it first happens, like, Oh, my God, you know, I mean, you know what I'm saying? Like, people come up to you. Not always, but there are people, a lot of people who have personal experiences where an uninformed person will come up to them and just say, like, What, did you feed that kid? You know, how did you do? Absolutely. Right. And that's a big problem. And then it's a bigger problem if it just happened to you. And you and you don't know that, that that couldn't be the case. Correct. I

Jennifer Smith, CDE 17:08
mean, when I was first diagnosed, my mom's coworker, my mother was a grade school teacher. And one of her co workers said, Well, I and I only her overheard the conversation between my mom and my dad, my mom did not tell this to me directly. But she was telling him that her co worker had said, well, thank goodness, it's just juvenile diabetes, she'll grow out of it. Right. I mean, and again, this was, you know, in the 80s. So clearly, a lot of I mean, this information is still out there. I'm not saying it's not but I mean, that's the misnomer of juvenile diabetes to, it'll be, it'll be over soon. You know, as soon as like, you turn 80. And magically, like, I'm not a juvenile anymore must be gone.

Scott Benner 17:55
Arden diagnosed in 2006. And I've lost count of the amount of people have asked me what age children outgrow it. Right. As if, by the way, have you ever outgrown anything? Like, if you ever heard of like, oh, you know? I don't know. He can't keep he can't process protein. Oh, he'll outgrow that. You don't outgrow? There's in the history of the world. I've never heard anybody say, oh, cancer, don't worry. You'll Yeah, like no one's ever said that. But for some reason, it is a really interesting example of how, how the wording is impactful just by calling it juvenile, you make it feel like once you're an adult, it doesn't exist anymore. Exactly. But I just one, listen, I want people to know that you didn't do anything to cause you're type one. Type one. And and I,

Jennifer Smith, CDE 18:44
you know, the question that I also get kind of along the same line is from a lot of the adults that I work with, who have children, they themselves as an adult have type one. And the question always comes up, either should I get my kids tested? Or how likely is it for my child to get type one? You know, quite honestly, there are statistics, if you really wanted to look things up. You certainly could look up some statistics, but it doesn't necessarily say your child because you have type one is 100% going to have type one too. So in a causative. If you have type one and your child ends up developing type one, likely there's a genetic link there, but you didn't necessarily cause that piece to turn on.

Scott Benner 19:29
Right? Like if you have brown eyes, and you don't like them, and your kid has brown eyes. It's not your fault. Your kid has brown eyes. So it's a genetics work. Yeah. And I understand how people feel like I mean, if I'm being honest with you, I wondered for a really long time what I could have done differently, you know, and so I was a stay at home dad. So I was with art and 24/7 I was the I mean you guys all they'll be fairly well from the podcasts like, I'm the kind of person who would wake up in the morning and be like, Wow, it's warm out getting the car, we're going to the zoo, screw the dishes, you know, like we went every which way. And before I understood these antibodies, I used to think, did I not wash something? Well, did I take her to the wrong place? What if I just wouldn't have gone here? Was it a ball pit that gave her diabetes? Like, before I understood that, in all likelihood, Arden was getting diabetes, you know, whether it was going to be when she was two, or three or four or whatever. It was definitely happening. You know, I don't think that we could have locked Arden in a bubble. And you know what I mean? Like, I don't understand the point of that, right? Like, at some point, let's say that would be true. Let's say that if I, by the way, you're gonna have to be really old for this one. But John Travolta was in a movie called The Boy in the bubble. And

Jennifer Smith, CDE 20:52
I was gonna mention that, like, nobody's gonna know what we're talking about some

Scott Benner 20:55
matter, I'm saying it, okay. It was a TV movie of the week in the 70s. I know, you don't know what a TV movie of the week is, if you're under a certain age, I don't care. John Travolta lived in a bubble. The only way he wasn't gonna die, because the outside world was just gonna, like his body couldn't handle it. You know, eventually he left that bubble, he didn't care. So if my point is that if you've got these auto antibodies, and you're gonna end up with type one diabetes, you're gonna end up with type one diabetes, and you're gonna live with diabetes, because that's, that's the straw you drew, you know, so you can't feel bad about it. I know, it's gonna happen and people are gonna feel guilty, but it's these antibodies fault, not yours.

Jennifer Smith, CDE 21:35
Right. And it's how your body interacts with them, right? Whether your body uses them the way that they're supposed to, to identify truly foreign pieces, objects, you know, viruses in the body. That's their job. That's you want them to be there. That's a really important thing. But sometimes they don't do the right thing.

Scott Benner 21:57
Friendly fire, Jenny. Yeah, right. There you go. Yeah. So oh, this was depressing.

Jennifer Smith, CDE 22:06
Nah, was informative. And I hope it's, I hope it was more, you know, I guess informative in a way. That's more, I guess, understandable.

Scott Benner 22:17
Yeah. No, I appreciate breaking it down. Because it's just like the other defining episodes really, you just make these assumptions that people know what Bolus means. And if they don't, they start forming other thoughts. And if you don't understand what these antibodies are, you could run around your whole life thinking you did something, or I could still think, why didn't I wash? Arden's hands one time, and she was a year old before I did something or I don't know what the hell?

Jennifer Smith, CDE 22:41
So I mean, I've gotten off of the whole, I've had people, I've had friends who who've asked me, Well, why do you think I'm like, I don't think anymore. I, I manage this. And I don't have time to go back and think because it's not going to make a difference. Right? Right. I mean, if it made a difference, in fact, of like proving what happened, and then I could actually move into like solving and having a cure. Awesome. But no,

Scott Benner 23:12
well think of it like this, really. I'll keep this vague, but my son is having a problem with another person. Okay, a person who holds sway over him. And he has, he's a bright kid and a thoughtful kid, and he's a thinker. And he will look at what's happening and break the problem down and say, maybe if I try this, this will allow me to you No, change this, to let this other person see that this isn't the case. Or maybe I can, maybe I can end around them and get around. And I've watched him for years, go over it and over and over and at times, make himself crazy about it. And just the other day, he said to me, there's no path. He's like, I'm not the only one impacting this situation. And no matter what I do, it's not right. It won't work. I have to just accept that this is the reality. And I'm going to go do something else now. And I when he was talking about that, I thought that is how I used to feel about diabetes. I used to think like, maybe I could think my way around it or, you know, at least to give myself comfort. And what I realized is that eventually is that the comfort is knowing that not everybody gets out of this unscathed. And people get things and my kids got an autoimmune problem. And she ended up with type one diabetes. And now we just we choose another path and go live happily on that one. So move on. Yeah, for sure. All right. Well, thank you very much. Yeah, absolutely. Have a good day.

Unknown Speaker 24:50
You too.

Scott Benner 25:00
I want to thank Jenny for being here. Don't forget that Jenny works at integrated diabetes.com. If you'd like to hire her, you can. I like to thank our sponsor today us Med, get your diabetes supplies easily, it doesn't need to be a big hassle. And with us med it won't be check them out and get your free benefits check at us med.com forward slash juice box or by calling 888-721-1514. There are links to us, Matt and all the sponsors in the show notes of your podcast player and at juicebox podcast.com. And don't forget to go take that survey AT T one D exchange.org. Forward slash juicebox. When you support the sponsors, you're supporting the show. At this point, I don't even remember how many defined diabetes episodes there are. But there's got to be more than 40. If you're enjoying them, you can find them at juicebox podcast.com diabetes pro tip.com, or by joining the private Facebook group Juicebox Podcast type one diabetes, and then heading up to the top I want to call it the I always want to use the wrong word. And then I hold on a second I'll tell you what it's called when you get the sort of the Facebook page is a private group. It's really terrific. I think it's got like 24 25,000 members in it right now. And at the top. Not here this there's a feature tab. So you have to answer a couple of questions to get in. But once you're in there, go to that feature tab. And there's a list of all the defining diabetes episodes, all the variables, all the how we eats the Quickstart guides. If you're just starting with the show, the Pro Tip series is a list of popular requested episodes popularly requested episodes if I'm going to use English special episodes, Scott and Jenny's where they're called ask Scott and Jenny people send in questions and Jenny and I answer them a whole bunch of stuff on how to Bolus for fat and protein. I mean, there's a ton here anyway, it's all in that private Facebook group up under the featured tab. This is the part where I say thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Please subscribe and your apps Subscribe and follow follow and subscribe.