contact us

Use the form on the right to contact us.

You can edit the text in this area, and change where the contact form on the right submits to, by entering edit mode using the modes on the bottom right.​

         

123 Street Avenue, City Town, 99999

(123) 555-6789

email@address.com

 

You can set your address, phone number, email and site description in the settings tab.
Link to read me page with more information.

Screenshot 2023-03-12 at 2.41.02 PM.png

Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

Filtering by Category: Type 1 Diabetes

#1361 After Dark: Stand Up Mixer

Scott Benner

Natalie overcame addiction and diabetes struggles to now lead a healthy, stable life.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT


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, welcome back to another episode of The Juicebox podcast.

On today's episode, I'll be speaking with Natalie in this after dark. She's 40 years old now, but she was diagnosed with type one diabetes in her teens. At this moment, she's recovering from drug and alcohol addiction, and this is her story. 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. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice box. If you are the caregiver of someone with type one diabetes or have type one yourself, please go to T 1d exchange.org/juice, box and complete the survey. This should take you about 10 minutes, and will really help type one diabetes research. You can help right from your house at T 1d exchange.org/juicebox, exchange.org/juice, box.

Dexcom sponsored this episode of The Juicebox podcast. Learn more about the Dexcom g7 at my link, dexcom.com/juicebox, today's podcast is sponsored by touched by type one. Check them out on Facebook, Instagram and at touched by type one.org. If you're looking for an organization who's helping people with type one diabetes, you're looking for touch by type one. Hi. My

Natalie 1:57
name is Natalie. I am a type one diabetes, 40 years old, and I am also a recovering drug addict and alcoholic. I guess my story kind of starts back with my mother, who was, I mean, I grew I was born and raised the Phoenix area of Arizona. They'll live here, born and raised in the same household. My dad still actually lives in very stable upbringing. In that sense, when it comes to my diet, diesel, it starts with my mom. She was a type one diabetic, and didn't find out she was a diabetic until she was eight months pregnant with me, and she lost her eyesight, so I immediately was delivered as a C section, and I was also almost 10 pounds that about eight months of pregnancy, my diabetes journey really started from the time I was born. Even though I wasn't technically born with it, I grew up around, you know, eating back in the 80s. You know, you eat the the Sweet and Low, the crystal lights, the diet sodas, everything was a diabetic diet for a whole entire family. So by the time it came around for me to become a diabetic, it really wasn't that much of a change. Can

Scott Benner 3:14
you tell me a little bit about your mom? Like, lost her eyesight for good?

Natalie 3:19
No, no, no. Once her, once her blood sugars got back under control, she gained her eyesight back. Okay, okay,

Scott Benner 3:25
that's what I kind of thought you were getting at, but I wasn't 100%

Natalie 3:29
Yeah, no, she, she got her eyesight back. Um, a little, a little more history with my mom is that she's also an alcoholic, so I grew up with her being in and out of recovery a lot as well, which eventually down the line, which led to her passing from her her alcoholism, which affected, obviously, her diabetes and so, like on her death certificate, complications of diabetes is why she died, but it was a direct reflection of her not taking care of herself.

Scott Benner 3:54
I'm so sorry. I can I ask a question like, do you have more context? Like, so she had type one. It wasn't gestational. I

Natalie 4:03
think it started off as gestational, okay, but she was diagnosed as type one. However, she also never, I think she may have gone to an endocrinologist, from my memory, maybe once for the whole time. I don't think it was much of a thing, or she was just so, so in control most of my life. I remember my mom being in such great control of, you know, giving yourself insulin. She'd have us give her insulin so we knew how to, like, give her shots, and we tested our blood sugars and her blood sugars, and she was super strict about diet and exercise. So she really did take care of herself for most of my life

Scott Benner 4:41
going? Would you consider her like a functioning alcoholic, or was she like a fall down drunk?

Natalie 4:47
I would say she she was more functioning until my parents got divorced. Okay? When my parents got divorced, I would think I was 16, 1516, I was around high. School time, and when my parents got divorced, my my mom completely different person. She's the one who moved out. My dad finished raising me, and so she moved out, and it was just downhill from that. It was just like one extreme to the other. She got into the drugs it was. She was homeless for some time. Every now and then she gets sober again, you know, a slew of bad men constantly, it kind of turned into my sister. My older sister really took the role of being her parent. Unfortunately, she had that burden on her. So me, my mom became a strain for about five years. You know, I was just angry. I was getting through high school. I was with my dad. Was just being my dad for even now, it's mostly just me and my dad.

Scott Benner 5:46
So how old was she when she was pregnant with you? You know, he was 30. Oh, okay, and you're the youngest.

Natalie 5:54
I have the youngest. Yeah, I have a sister that's four years older than me. Okay. And then, how

Scott Benner 5:59
old were you when you were diagnosed?

Natalie 6:00
So here's a funny story, or the weird, the weird part, I don't have an exact like, Hey, this is what happened. You know, I was in DK, you know there was, there's no, like, big event that came with it. It was my mom saw the signs. And I think I was around 11, and growing up, I was a huge dancer. I danced almost every single day dance studios. I was a cheerleader. I was extremely active. And when I was around 11, my mom started, I guess, noticing the signs and the constant being thirsty, the yeast infections, the peeing all the time, and the doctors kind of pushed it off. And I remember going there, and they're like, oh, we'd rather just watch her for a little bit. And then once I got into my teenage years, I got into drugs and partying, and I just, I, of course, I neglected myself, and so I never actually got an an official diagnosis until I was almost 18, okay, and then I didn't take care of myself and actually give myself insulin until I became pregnant, and that's when I decided I should live for something. And I was at 19,

Scott Benner 7:13
about a year later. Hey, did your when you were growing up? Was your mom using in the house? Or is that a thing that happened after she left, or was it happening? And that's why she left

Natalie 7:23
the alcohol, the alcoholism in the house. Like I've never, I never knew my mom to do drugs, except for maybe when I was really, really little. She used to have special cigarettes, which I now know it was weed, but I never saw her like, really do that. It was mostly just the alcohol. It was very dysfunctional behind closed doors, for sure, my mom was a raging alcoholic. It was being woken up in the middle of the night with my mom on top of my dad, with a nice tons of fights. It was running to the bedroom, you know, and hiding from everybody to serve, going crazy trying to break up fights. There was a lot of that that I think I have chosen to probably block out, or I was too young to really understand what was going on at the time, my sister has some crazy stories that she can tell you, but for me, I remember my childhood being mostly good. And I don't know if that's like a defense thing, a mental thing. I don't know what that it is, but most of the memories were good, but I do remember that when mom was bad, she was really bad, and she she was crazy.

Scott Benner 8:33
Does she have any mental illness that you're aware of?

Natalie 8:36
Definitely depression, probably some anxiety thrown in there. Nothing like bipolar or anything that required, I don't know her, to be necessarily, put in a hospital or anything. But as since she's passed, I have found out a lot of serving history, like family history, which has been interesting to find out on her side, on her side, yeah, my mom's an army brat, and so, you know, she grew up all over the place, but my my grandmother is from Australia, and so they lived in Australia. My mom was very young, and just some of the stuff like, I mean, forgive me, grandma, but she was a whole and she has, like, like, random kids places. The reason why she married my grandpa, I guess alcohol, alcoholism runs deep with my grandma, and she was a raging alcoholic as well. Oh, okay, so it runs deep on my mom's side.

Scott Benner 9:34
Are you an alcoholic? No,

Natalie 9:35
I am. I mean, I'm not. I'm I'm recovering alcoholic. Okay, so I was gonna say there's parts of my life where alcoholism was definitely the main focus, you know? I mean, obviously it landed me in jail, got a DUI, but mess was my big thing. I never really did the both. It was either one or the other, either I was off the chain with alcohol or it was. I loved doing that math was my favorite until it got too real.

Scott Benner 10:04
What age did you start with? Well, I guess, what did you what drug did you try first?

Natalie 10:08
Actually, the very first thing I ever tried was acid. Oh yeah, that was the very first thing I ever did. And I think I was 15. I was in ninth grade, so I was around 15. How does that happen? I know I think it was at a party. It was, like, one of my very first parties, okay, that I ever went to, and so I just remember trying it and it was fun, and I never did it again, like, ever again. Like, it was cool, it was fun, like, whatever, like, it was scary to look into me, or, I think being my best friend. Best friend last so much, we literally feed our pants, full experience whatever, no interest in touching it again during that time, though, that my ninth grade year must have been around. That must have been women, parents got divorced, because that's when I really got out of control. I would drink alcohol while I was sitting in class, I would have vodka in my walk model, and I would drink him. I eventually did get caught once, because I took all over the floor inside my school. So I got, you know, suspended for that, and I got kicked off a cheerleading so I'm pretty sure that's the memory that people have of me as the girl or the cheerleader who's her up all over the hallway in ninth grade.

Unknown Speaker 11:24
Geez.

Scott Benner 11:25
You remember this is good? Or you remember like younger years is good? I

Natalie 11:30
remember my younger years as good, you know, I remember my parents being really in love with each other. They would dance together, you know, they would kiss like we did everything together. You know, we took lots of family trips. They were always very supportive. Everybody was always the whole family was always there together to support each other. We'd always have like we were Girl Scouts, and I'm almost a troop leader, but nobody knew what was happening behind closed doors when everybody left

Scott Benner 11:57
those cookies are like crack. So maybe that was, maybe that was her.

Natalie 12:01
Maybe that was really the start of it. Well,

Scott Benner 12:04
okay, do you think looking back now with hindsight, like was the laughing and dancing and kissing like mom and dad were drunk in the living room all the time? Oh,

Natalie 12:13
absolutely. Okay, absolutely, yeah. And when we have these big bonfires in the backyard with the family members, of course there were tons of alcohol, right? Tons of alcohol.

Scott Benner 12:23
Did you feel supported emotionally? Did you like if you needed help with homework or a life problem? Did you feel like they were there for you for

Natalie 12:32
the most part? My mom, my mother, absolutely okay. She was also a huge enabler. Never, ever questioned my parents love for me, I don't think when it came to, let's say issues or big things that happened, we were kind of the family that swept it under the rug. Like, okay, this happened, let's not talk about it later. Like, just get through it, and we just don't talk about it. Like, you're grounded for a week and that's it. We just don't talk

Scott Benner 12:56
about it. Yeah, do you know who initiated their divorce? My

Natalie 13:00
mom would threaten divorce a lot, but my dad finally pulled straw on

Scott Benner 13:03
it. He's like, hey, you know what? Why don't you actually go, yeah? He's like,

Natalie 13:07
Yeah, I'm been doing this for 20 years, like I'm done. Did your

Scott Benner 13:11
dad clean himself up? Or would you call him addicted? Now,

Natalie 13:16
you know, I really, I feel my dad is a functioning alcoholic, like extremely functioning, like my dad is. He drinks a lot, but you won't see him drunk, but you also won't see him without a drink,

Scott Benner 13:32
maybe, like a 12 pack a day kind of thing. Well,

Natalie 13:35
he's a vodka drinker. But yes, okay, yes, he will. He's a bot pi draker, as he's gotten older and his body's hurting, I, for some reason, I feel I have absolutely no proof of this. I feel like there might be pain pills involved. Oh, geez. But my dad will, he's he has pride. He will never admit anything.

Scott Benner 13:56
Did you grow up in poverty? Did you guys have money? Where was your What was it like? Financially?

Natalie 14:02
I would say we were middle class, okay. However, also growing up, my dad, come like my grandparents, or my grandpa was an aerospace engineer, and he used to be vice president of TRW, which is now Boeing, I believe so. My dad grew up very wealthy in the Pacific politics in California, his godmother was vivid and Vance from, and she's Ethel from, I Love Lucy, really. Oh, he grew up, yeah, yeah. He grew up kind of like the a list or lifestyle. We had everything that we needed, and probably most of what we wanted. Looking back on what I also found out is like the reason that we had the house was because our grandparents bought it. You know, the reason why my parents had the cars they did was because my grandparents bought it. So you think your parents grew up poorly. My dad did not, absolutely no, my mom. I mean, my mom was an Army brat, so and there was. Five kids in her family. So, I mean, I don't know how that was. She's never said anything that she lived early or wealthy, never, she didn't talk about the childhood much, actually, yeah,

Scott Benner 15:09
Dexcom g7 offers an easier way to manage diabetes without finger sticks. It is a simple CGM system that delivers real time glucose numbers to your smartphone, your smart watch, and it effortlessly allows you to see your glucose levels and where they're headed. My daughter is wearing a Dexcom g7 right now, and I can't recommend it enough, whether you have commercial insurance, Medicare coverage or no CGM coverage at all, Dexcom can help you. Go to my link, dexcom.com/juicebox, and look for that button that says, Get a free benefits check that'll get you going with Dexcom. When you're there, check out the Dexcom clarity app or the follow. Did you know that people can follow your Dexcom up to 10 people can follow you. Right now, I'm following my daughter, but my wife is also following her. Her roommates at school are following her. So I guess Arden is being followed right now by five people who are concerned for her health and welfare. And you can do the same thing, school, nurses, your neighbor, people in your family, everyone can have access to that information if you want them to have it, or if you're an adult and you don't want anyone to know, you don't have to share with anybody. It's completely up to you. Dexcom.com/juicebox, links in the show notes. Links at Juicebox podcast.com, and when you use my link to learn about Dexcom, you're supporting the podcast. This episode of The Juicebox podcast is sponsored by touched by type one. Touched by type one.org if you're looking for a great organization to support someone who's supporting people with type one diabetes the way you would like, you're looking for touch by type one, touched by type one.org or find them on Facebook and Instagram. They're long time sponsors of the podcast, and they're out there doing great things for people with type one diabetes. You're 40 now. For 15 minutes, you've explained to me what it was like growing up. If I said to you, how was your upbringing, you'd say I would say I had it better than many. It's interesting. Okay, do you know what the aces are the adverse childhood experience list?

Natalie 17:18
No, I fit into that category. I feel like I felt they would, oh, my God.

Scott Benner 17:22
It feels like they were talking to you and then just wrote down what happened to you and made the list. These are risk factors for childhood development, right? So they're traumatic events or circumstances that could lead to, you know, their risk factors, let's say for you not turning out the way you would hope this is the list chronic stress, so ongoing stresses, whether they're family issues or financial stability, academic pressure, anything like that, that's, you know, anxiety, depression based. I'm going to count growing up with drunks as a stressful abuse or neglect. Were you physically, emotionally or sexually abused? No, you don't think emotional abuse being the child of alcoholics? Probably, yeah, okay, yeah. Probably the next one is parental substance abuse. Growing up with parents who abuse drugs or alcohol, we've got that one so we have stress. We're going to give you parents of substance abuse. Maybe we'll skip over abuse and neglect. But you know, because you get the other one, any domestic violence, you said, yes, your mom would hold a knife on your dad. Yep, losses, poverty, you didn't have lack of parental involvement, like sufficient attention, guidance and support, but like the kind you would want to give a child, not just like they were

Natalie 18:39
there, being there, yeah, they were present. I mean, their physical bodies were present, okay,

Scott Benner 18:45
lack of parental involvement. We got inconsistencies and discipline. And you said there, yes, right? Yes, absolutely. Any mental health issues with your parents.

Natalie 18:56
I know my dad struggled with depression as well as my mom that. I mean, that's all I told about.

Scott Benner 19:03
Well, divorce or separation, you have that one, and then the last one is exposure to crime or violence,

Natalie 19:10
yeah, I guess so, yeah. I mean, if you think about like, when it comes to like, crimes, my parents were, like, the type that would go still, street signs,

Scott Benner 19:19
wait as adults.

Natalie 19:21
Oh yeah, oh yeah. So we lived in this area that wasn't built up yet. I mean, now it's huge in the east valley here, but like, they would put these little I remember specifically in this farmland area I think they were going to be building and they have these street signs of what the street names were going to be. And I remember in we had like, a 1972 station wagon. I don't know why I remember that so well, okay, but I remember being in the back of that station wagon, and my parents driving up next to this field and stealing all these street signs, and then we had them all lined up in the backyard, on the porch. I think my dad still has a couple of them hanging up there, actually. 5050, well,

Scott Benner 20:00
modern mental health doctors believe that you had, and this is me making up a term. It's not from a list, no fucking chance. Yeah.

Natalie 20:12
I know absolutely, absolutely. Isn't

Scott Benner 20:15
it interesting is that the things that happen in your adult life, which we're going to talk about, are completely predictable by these things,

Natalie 20:21
yeah? And it's, it's crazy that it's able to be

Scott Benner 20:25
predicted too. Yeah, no, no. I mean, isn't Isn't it odd to hear somebody read a list to you, and you go, Oh, yeah, that, yeah, yeah, yeah, yeah.

Natalie 20:33
So what is this? Where do I call it? What was this thing called? Oh, if you want to look

Scott Benner 20:36
into it more, it's called the it's called aces. It's adverse childhood experiences, or sometimes people call it risk factors for childhood development, but the term ACES is it should get you there on a Google search so you start, okay, Jesus. Now, do you have a good sense of humor about this? Natalie?

Natalie 20:53
Oh, hell, yeah. Okay. Okay, good. Me. I mean, you should hear the sense of humor me and my my daughter have about everything, even the stuff that she's been through that I put her through,

Scott Benner 21:02
I've put her well, we'll get to that. So, yeah, 15 you go to a party and you're like, you know what? I could start slow with a half a beer, or, why don't we try acids? But did that, Christ, I know was that the first half hour you were there and is, I mean, can you look back now? Were you trying to escape, like, how you felt? Do you think you were just, like, getting involved in the family business? Like, what was going on there?

Natalie 21:27
I honestly, I feel it was kind of like I am hanging out with, like, the popular people at school. And I, I remember being just really excited that I was a part of that group.

Scott Benner 21:37
Maybe it was what they're doing that I'm in. Like, yes, exactly. Okay,

Natalie 21:42
exactly. All right,

Scott Benner 21:43
let me just weed. Probably yes, right?

Natalie 21:46
I've maybe been like, I a total of 10

Scott Benner 21:51
times, if that my whole life. Interesting cocaine,

Natalie 21:54
I've never liked it. You didn't like a couple times.

Scott Benner 21:58
Cocaine, a couple times. How about heroin? Never, never. I don't even like pain pills. Gotcha, but meth, yes, please.

Natalie 22:08
Oh yeah, okay, that's the winner. How old? First time, first time I was 17. Wow. My sister introduced me to

Scott Benner 22:17
it. Your sister was like, hey, you know what you would love math.

Natalie 22:23
So my sister had her, you know, my sister had a worst upbringing, or she remembers the real upbringing that I choose to forget. And she started very young, getting in trouble. She, she, you know, I was a golden child. If there was a golden child between us, I was a golden child. So she was the bad one. She started doing method like 15, and she's four years older than me, so when I was 17, she was already moved out of the house and stuff, okay? And I always kept my distance from her, because, I mean, I was in school and, you know, I was doing semi Okay, and somewhat of where I was going in life compared to her, right? But once my heart got broken by my heart my high school sweetheart, everything changed for me. Okay, everything. And I went to go see my sister, and that was it. So you go to your sister

Scott Benner 23:11
for some sisterly advice. And her advice was, let's do math. Yeah, wow, basically, geez, yeah.

Natalie 23:19
And I remember doing it for the very first time. And I'm like, like, smoking this bowl. And I'm like, I remember thinking, like, What the hell is this? Because, you know, like, when, when you drink, like you feel it like you your eyesight feels it like your whole body, like you could feel it. But like with meth, I was like, Okay, what is this? She's like, you haven't shut up for like, 30 minutes. This is the effects. This is this, is it? I'm like, oh, okay, cool. So I could be more outgoing. I was a little bit shy, Tim at person until you got to know me. Yeah, I was very shy. Actually, that's

Scott Benner 23:51
some positive PR for meth, by the way, be more outgoing. Have your teeth fall out. Do you have your teeth? I do. Congratulations. You know, I've

Natalie 24:01
also been blessed throughout my childhood of despite my criminal background and my history, I've always landed, not always, but most of the time. I've landed great jobs with big corporations that have good health care, really, so I've been able to keep my teeth like right now I work.

Scott Benner 24:19
My son's having trouble getting a job. Do you think I should tell him that on meth, you had no trouble getting hired? How do you think you'll well,

Natalie 24:28
okay, here's the thing. I didn't work when I was on very well, okay, did a little bit, but most of my adulthood have, I've been in recovery. I say it's been an on and off thing, um, mostly in recovery most of my adulthood. So

Scott Benner 24:43
how long did the seriously, how long did the math using go on for and at what point do you try to, like, get cleaned up? So from

Natalie 24:49
the time like 17, stayed on, it pretty consistent. I never got in trouble anything. It was just, if it was around, it was around. And you. My sister's boyfriend was the drug dealer, and she was with him for like, 15 years.

Unknown Speaker 25:04
He's got a good job.

Natalie 25:07
Yeah, it worked for a minute, right until it didn't. So it was always free to me. When I got pregnant is when, like, life started, like, flipping the switch, and during my I didn't really explain. Explain this for other people. It makes sense to other people. I was 19 when I got pregnant. I had sex with, you know, my daughter's wonderful dad. I say that very sarcastically. I mean, he's doing well now, but you know, at the time, not a good choice. I got pregnant after having sex with him one time, that same night that we had sex, which was Christmas morning, we got rated by the Feds for him because I picked a winner,

Scott Benner 25:46
jeez. So this wasn't the first time. Was this first time you had sex with him? Yeah?

Natalie 25:52
Christmas morning, the one and only time we had sex. And then the feds came and rated us for him. Merry

Scott Benner 25:57
Christmas. Here's a baby. Yeah? Get dressed. Yeah. And I because Uncle Sam, I ignored

Natalie 26:03
it too. I ignored that pregnancy for almost five months.

Scott Benner 26:06
You knew you were pregnant. You tried to pretend you weren't. Well, here's the thing.

Natalie 26:10
Apparently, you know, you have to read the directions when you take a pregnancy test, you know, so you're supposed to wait until you have a missed period. But when you're high all the time, you don't know what, how long it's been since you had a period. So I took two pregnancy tests, and it says I wasn't pregnant. So I was like, okay, like, I'm not pregnant. And then when I started, couldn't, couldn't put my pants on anymore, I finally was like, Okay, I need to go see a doctor, and I was pregnant. Really?

Scott Benner 26:36
Wow. Yeah. So I was, were you doing meth that time? Yeah, yeah. Go ahead, tell me yes,

Natalie 26:41
I was, I was totally getting high the whole time until I was about five months. Did

Scott Benner 26:46
that have any effects on the baby? Glad to ask her. I

Natalie 26:48
mean, she came out fine. She came out completely wonderful, beautiful, seven pounds other than that. I mean, does she

Scott Benner 26:56
know this? Like this, something she's aware of? Yes. Explain to me the day you said to your daughter, your daughter, right? Yeah, yeah, hey, honey, I have to tell you something. I used meth for the first five months of your pregnancy. So I don't

Natalie 27:11
really know how this topics started. I pretty I used to bring her, or even now she'll come with me every now and then to, you know, like a a meetings and NA meetings, you know, and topics would get brought up. I don't know if remember that conversation actually having with her, or if it was my even my sister drugs during her first pregnancy. And I'm, I don't remember how the conversation started with, we mean her. I was like, you know that I was high during the first part of my pregnancy with you. I remember saying that and us having a conversation. I don't remember how the topic got brought up in the first place.

Scott Benner 27:53
Okay, how many kids do you have? Just one one, it's the one. Just this lucky, this lucky baby that came out after Christmas, by the way, was that your Christmas present, like, did you get a bracelet too, or something? It's terrible. Jesus, my God, all right, hold on. It's

Natalie 28:14
not like we were in love. You know, I feel, in a way, I feel very fortunate because, like her dad, he's actually been on the news telling his story. He's kind of a cool dude to talk to, but he's been in and out of prison, you know, since he was 20. And he's 10 years older than me when I met him, you know, I was about 19, and he had just gotten out of doing 10 years in prison, and so I knew he was on the run, and then when he defense came and rated us, he did, like, another six years, got out for like, maybe a couple months, went back. He's been gone. He was gone consistently until she was about 14 or 15. So I told, in a way, very blessed that, like, he wasn't around, he didn't break my heart. He knew from day one. I never said I was going to be with moms. Like, dude, I'm done. Bye, yeah. Like, we've had an, like, a friendship relationship. And, you know, because of our daughter,

Scott Benner 29:10
listen, you weren't a virgin on this day, correct? Oh no, no. Oh no, God no. Did you hear the story about my grandmother?

Natalie 29:18
Yeah, yeah.

Scott Benner 29:20
What I meant was, is that what I was trying to get to was a lot of your existence, just like, go somewhere, get high, have sex, yes, okay, and yeah, I got you. How are you involved in these many things that I know for myself, I'd go, I have to leave. Like, I don't want to be here. Like, if I went to a party when I was 15 and somebody was doing as they'd be like, Oh, I made a mistake, and then I would have went home. But what draws you in, over and over again? Oh, yeah, what doesn't stop you?

Natalie 29:51
I think maybe it's which is super controversial for a lot of people, of being able to stop I think my addiction kicked in. You know what I mean? There, there comes a. Point where you like to, I don't know if there's any medical terminology, but it's like, it flips a switch in your brain and it becomes the obsession. You know, it's not like, especially with math. It's not a physical obsession. It is a mental obsession. It's like that. What is it the dopamine or the serotonin that get kicked in? And it's just like, you have to have more. I can't even explain not,

Scott Benner 30:23
like, the way people like, talk about heroin, for example, like, it's not, like, a physical you think it's not a physical addiction for you? No,

Natalie 30:30
I mean, it would be physical, as in, you need more to stay awake and to, like, move and stuff, but you don't get physically ill. Offered, you know, like, the worst that's gonna happen when you come off of meth is you're gonna sleep, you might have a crazy outburst because you're so emotional, you're gonna cry and you're gonna eat a ton. Okay,

Scott Benner 30:48
well, chatgpt believes that it is physically addictive. It says someone uses meth it triggers the release of large amounts of dopamine in the brain, which creates intense feelings of pleasure and euphoria. Over time, the brain's chemistry can change, leading to tolerance, needing more of the drug to get the same effect. Yes, yeah, yes, that's your experience with it. Yes, absolutely. Okay. Wow. How old were you when you're diagnosed with type one?

Natalie 31:15
I was about 17, around 17, almost 18. I couldn't remember. I didn't start taking care of myself until I was pregnant, though, okay, yeah, I'm

Scott Benner 31:22
sorry. I couldn't remember at all. I was like, I was dizzy by the whole thing, are you taking care of your diabetes at all during that time? You have to be taking basal insulin at least, right?

Natalie 31:32
I would every now and then when I remembered, okay, it was like, and fun story is that I actually one of my best, like, using buddies was diabetic, and she was a type one diabetes since she was, like, nine years old, and so, like, when I'd see her take her in, I was like, No, I should probably check my blood sugar and see what mine's at as we're eating a pack of Skittles and drinking, you know, a Code Red Mountain too, because that's what we love to do. What

Scott Benner 31:56
a great idea. I should take my insulin. So, I mean, were you going to the doctor?

Natalie 32:00
No, no, no. So I got kicked off of my parents health insurance when I was out of school, because, you know, that's the way it used to be, yeah, and so, like, I was on state assistance. I made sure I stayed on government, like health care for so many years, like, intentionally made sure I didn't make enough money to make sure that my diabetes was taken care of. Yeah,

Scott Benner 32:22
so many years, so sad. I mean, it just is. Well, not just the whole thing is, you get diagnosed in your 17 there's no one there to God, there's no one there to be a parent, you know what I mean, and and to learn about this thing for you and try to help you navigate it. You're high now, so you're not even paying attention to it. They don't. I mean, you're a meth they got to know you're using meth, right?

Natalie 32:45
I was sure they knew. I mean, not once did anybody ever bring it up to me. But I'm sure

Scott Benner 32:51
that no one ever looked Natalie, you okay? You look high.

Natalie 32:56
Yeah, yeah. No, never, never. And you know, I was also never a person that got extra skinny or lost a bunch of weight, if anything, I was like, at the weight, I probably should have been, according to doctors, I didn't like pick my face. I didn't, you know, I have my teeth. I didn't fit the description of a tweaker at all. Oh, Jesus,

Scott Benner 33:16
this. It's so much to think about. You know what I mean? Like, there's so many people who are supposed to be supporting each other, but they're also lost in their own problem. That how could they possibly, absolutely,

Natalie 33:26
yeah, absolutely. And during that early time, my mom was actually in recovery, and she'd keep her distance, um, she'd let me come to her. Of course, I would go to her when, you know, like, she said, Yeah, Mom, I need money. Mom, I need this. Mom, I need that. And then when it was like, Mom, I'm pregnant. Like, if it wasn't for my mom, my daughter totally would have, and should have been taken away from me, for sure, for sure,

Scott Benner 33:49
because you would have done such a poor job, or because she was able, okay, yeah,

Natalie 33:55
to be completely transparent with it. If I wasn't so far along, I would have had an abortion, for sure. I never wanted to be a mom ever.

Scott Benner 34:05
It's because you found out at five months you couldn't do it, correct, yeah, all right, you would have had an abortion, but you didn't know for five months. You're so high you didn't know for five months, right? Right? Okay, exactly, all right. And then you find out you don't know what to do, so you go to your mom, yeah, what does she do for

Natalie 34:26
you? She hugged me, and she's like, You don't have to do this alone. I'll do it with you. I remember that, and we cried. She immediately went and found out the part, because at the time, she was running a halfway house, a recovery house for women. She put her whole life like on hold for me. She went and got us our own place that we stayed in for a few years together. You know, she helped me raise my daughter in the beginning, for

Scott Benner 34:50
sure, what was that like? Was she any good at that? Yeah,

Natalie 34:53
my mom. So another crazy part about my mom is she

Scott Benner 34:56
clean by then? Yes, yes. How does she. Like,

Natalie 35:00
when my mom, when she's like, when she's great, she's great, like, she is like, this person that you like, walk into a room and people are in awe of her because her aura was so good. But like, when she's bad, everyone is just like, Get Get away from me. Like, it's just crazy the night and day. Okay, now she also all my growing up, and from the time like I was born until the time I was 11, my mom was an in home daycare provider, and she had a sorry, hold

Unknown Speaker 35:29
on a second.

Natalie 35:30
I know, I know, I know he had a wait list, because people in the neighborhood wanted her to be like, watch their kids. She used to have a total of sometimes 16 kids at our home during the day. Is

Scott Benner 35:44
there any chance this was a front for a drug dealing thing?

Natalie 35:49
They dropped the kids off? Genius, yeah, maybe pick it up. Pick

Scott Benner 35:53
it up drugs when they drop off the kids.

Natalie 35:57
The new next series should start on that one.

Scott Benner 36:01
Jesus, hey. So you know this is screwed up, right? Oh, absolutely okay. All right, you completely were okay, so, all right, you have your daughter. When do you get locked up? What happens there?

Natalie 36:13
I have my daughter. She is about, I think it was around 2000 I don't remember the years, but my daughter was young. I eventually had gotten clean because I had gotten in trouble. I got my first felony. So I went to rehab and I stayed clean. I don't even want to say I was in recovery, so I just stayed abstinent for about five years. What was

Scott Benner 36:35
the felony? Well, I

Natalie 36:36
had that just means of transportation, and then I had that's with a credit card, forgery with a red instrument and identity theft.

Scott Benner 36:45
But forgery with a, what a written instrument,

Natalie 36:48
okay? Because I signed using one of the digital things,

Scott Benner 36:53
okay, oh, after you stole the credit card. Oh, yeah, yeah, we

Natalie 36:56
went to Macy's whose card just

Scott Benner 36:59
a person's No, okay, yeah, yeah, I got it. I have to ask you, what did you buy at Macy's?

Natalie 37:05
My God, a mixer, like, what? You know, those stand up mixers that I had no idea what to do with, but I knew the dope man would find it valuable. You know what? I mean,

Scott Benner 37:23
you bought the mixer to sell the mixer, yeah, yeah. I'm sorry. It just sounds so ridiculous. You're like, you know, I just thought I'd get into making cookies. Scott, like I was all charged up on meth, and I had this credit card, and I was like, I got, we should try baking, yeah? But you

Natalie 37:39
were, I mean, that sounds normal, actually, yeah, like you're describing

Scott Benner 37:44
Thursday. It's so crazy. It's so it is crazy, and it's sad and happening to way more people than somebody would want to believe. Yeah, what leads you to get

Natalie 37:53
clean? I had was put on probation. Then my probation officer was like, Hey, this is your choice. You are not missing clean anymore or at all, or you're diluting, you know, like all these issues, you're either going to show up to this rehab or you're going to jail. Like, these are your choices. Okay? And so I went, and I showed up at that rehab, and at the time, I was actually have been with somebody who we use drugs with, and he had gotten clean on his own, and he was like, literally just waiting for my time to come, for me to get clean. And so he was already in recovery, doing well, and as soon as I got clean, we immediately got back together. We stayed together for a long time, and actually was engaged to him at one point,

Scott Benner 38:36
but you did go to jail. Is that correct at one point? I did that comes after this felony. Oh, after you got clean. Sorry, yes, yes.

Natalie 38:45
So I got clean. I never saw any jail time for that. Those charges, right? Because it was, like my first offense, you know, the relation, yeah, finished. That completed. After my fiance and I broke up, I went on the Benner of drinking alcohol. That's when I was like at my worst, and probably the most like alcoholic me I've ever been. My favorite thing to do was drink alcohol, drive a car, listen to music, and I used to do all those things together when I didn't have my daughter around me. So I got a DUI, and in Arizona at that time, not sure how they are now, but the laws were hard, super hard, and that's where 10 city came into place. It was my first DUI by first and only DUI offense. And I blue like a point one, five, but my blood came back at point 255, of course, they went with a higher charge. So I had a Super Extreme DUI. They let me do work with work release, which was crazy. So I did work release for 15 days, and then after work release, I was on house arrest for 45 days, and I had a breathalyzer in my house. So every time I'd come near like the house or entering back. Into the house, I have to go blow into this machine. And when I was on that house arrest is when I picked up drugs again, because I couldn't drink, couldn't drink. You know, the next option would be drugs during

Scott Benner 40:11
all this. There's no point your brain just, there's no point. I understand addiction and the idea there, but I'm just, there's no point where you just, like, think, like, this isn't going well, like my life is not going well. Or do you think it is?

Unknown Speaker 40:26
No,

Natalie 40:27
I absolutely know it's not going well,

Scott Benner 40:29
okay, but you can't stop long enough to like, did you have the opportunity for a change? Were you without opportunity as well?

Natalie 40:36
You know my aunt Missouri, like after so I left my fiance, I had gotten my own place. Of course, I ended up losing that place because the DUI and then and at that exact same time, like, literally, like two weeks after I got that DUI, I got laid off from my job. That was around 2008 I remember it was like the the recession type era, and I went to go live with my aunt, my daughter and I went to go live with my aunt, who also have both her and my uncle both have, like, long term, like, 20 plus years of sobriety. Okay? So I was like, perfect. This is where I need to go. But it didn't help. It didn't work. You know, I all I did was waste my time. I'm getting high during that time Jesus

Scott Benner 41:20
Christ. Oh, God heights, the horrifying okay, how do you end up in jail the next eventually, then

Natalie 41:26
eventually, because of the guy I was dating. I don't even, I'm not even sure stuff started getting too real. We took off in Texas because, of course, that was supposed to be a new change, and if I just get out of Arizona, I'll be fine. No,

Scott Benner 41:40
the problem is, it's Arizona, not me, yeah, of course, yeah, it's not me, right? If I can get out of here, I'll be okay, yes, okay, exactly. So

Natalie 41:49
my daughter's dad's family lives in Texas, and they said, hey, we'll put you on a train and you come move out here. So within seven days, I packed my daughter, my current boyfriend, and myself and we moved out to this little, tiny town with like, a population of like 5000 people in Texas. Awful experience. When I came back from Texas, I had a warrant out for my arrest for not paying my fines. Okay? I think it was like a bench board or something. That's what got me placed in jail.

Scott Benner 42:22
What went wrong that this is going to we're going to relocate, and everything is going to be great plan. Where did

Natalie 42:27
that go wrong? I immediately put us into another dysfunctional family. His whole family is also alcoholic, and his sister was so messed up on pills, like it was just like Jesus, you know, just me taking a step, and nothing changed. It just happened to be with a new family. Natalie,

Scott Benner 42:44
do you listen to the podcast? I do I sound like, square to you when I'm talking or do, like, how do I come on? Like, I'm being, being, like, really serious. Now, I'm not making this about me. I'm just trying to understand, like, I'm hearing your life, and I'm like, What in the hell is happening? Like, when you hear mine, what do you think? Normal, happy,

Natalie 43:04
stable.

Scott Benner 43:04
Is it like, I wish I had that like, because I get notes from people sometimes who are like, Arden, so lucky to have a dad who blah, blah, and a mom who and I, and I think all the time, like, how is that lucky? Isn't that the minimum I should expect from my parents? Oh, absolutely. But in most people's lives, it's lucky, you know what? I mean,

Natalie 43:25
yeah, unfortunately, yeah, no, I get what you're saying. You know I mean,

Scott Benner 43:29
no, listen to your list for a second. Your grandmother, your mom, your dad, your sister, the guy you met who rolled over on you and got you pregnant. Yeah, his dad, your sister, everybody you walk into the guy over here, the guy over here, like, you never once bump into somebody who's like, oh my god, Natalie, you're you're so lovely. You should be in the spelling bee with me. And you go, Oh my god, the spelling bee, that'd be wonderful. Nothing like that ever happens to you. Which indicates that you're so surrounded by it. Yeah, yeah. Absolutely. Jesus Christ,

Natalie 44:02
I'm a firm believer. Of, like, no, also, like, the laws of attraction, we attract people like us, you know, like, quote, unquote, like, normal people don't hang out with drug addicts. Well, yeah,

Scott Benner 44:13
I mean, there's, there's a fair statement for you, like, like, like, you

Natalie 44:18
know what I mean, like, I'm not going to be appealing to like, like, if me and you were to cross paths on the street, even having a conversation that's probably not ever going to go any further than that conversation, because we just have two different lifestyles. I

Scott Benner 44:30
could think you're lovely, have a great time talking to you, but you think there's some level where I'm going to I would go. It seems like maybe trouble. And no thank you. But would you see me and think, like, oh my god, stable. Like, how do I make this happen? Or do you think, no, I gotta go find a drug addict, because that's how I fit. See what I'm saying.

Natalie 44:47
The search was always to find somebody better and more stable than me. For

Scott Benner 44:51
sure, literally, just couldn't identify anybody and get and bring them into your life, into your sphere. Yeah.

Natalie 44:57
I mean, who would want, who would want to deal with this hot. Mess. You know what? I mean, nobody wants I mean, I'm sure you want to be captain save a hoe. They'd be like, that's a mess. Sorry.

Scott Benner 45:09
You know what's funny is, later I will get like, somebody will like, someone's gonna write a note that say I was like, insensitive to you, or I don't understand blah, blah, blah. They'll skip right over the part where you said Captain save a hoe talking about yourself, by the way, they'll just be like, no one will bring that up when they're yelling at me for doing this wrong. Later. I love what my job it's ridiculous. Holy Okay, Jesus Christ. Texas doesn't work. I have a hard time keeping up with this. Texas doesn't work. You know, you head back home, you get home to find out there's a warrant for you, and they and they arrest you, correct. How did they find you, though, like, how do they know you're back?

Natalie 45:45
I was at a bus stop.

Scott Benner 45:47
Oh, go ahead

Natalie 45:48
that that boyfriend that came to Texas with me. I was at a bus stop, and I think we were yelling at each other, and a cop happened to see it. Is everybody, okay? Yeah,

Scott Benner 45:59
let me see some ID. And then they he calls the guy, and the guy goes, Yo, you got one? Yeah, basically, you there with your baby or your daughter? No,

Natalie 46:09
the whole situation, I didn't bring my daughter, necessarily, through all my drug use, because it goes on and off, on and off, on and off from the time my daughter, when we got back to Texas, of course, I had to be like, Dad, I need help get me, you know, save me. And his stipulation was, either you live here or your daughter lives here, you're both not living here. It's a It's weird. My dad, my dad's weird. That's a whole nother thing, trust me.

Scott Benner 46:37
Hey, Natalie, you're all give yourself some credit. You're all weird. Don't worry about it. I'm weird too, but in a different way. But go ahead,

Natalie 46:49
my sister had taken my daughter, well, I went to my dad's okay. So which my daughter probably has a terrific story for you and her her growing up, because that's so cool

Scott Benner 47:01
when you put her with the lady who gave you meth for the first time for a while. Yes,

Natalie 47:05
yes. See my sister when we got in trouble for, you know that mixer that I bought at Macy's, my sister went to prison for that. Get out of here, he didn't get her life together. Yeah, I think she did two years and when she got out of prison, she's completely changed her life like she didn't. I mean, she's had her hiccups here and there, but she's her life.

Scott Benner 47:26
She completely changed her life, except for that six months where she muelled And like, oh God, exactly.

Natalie 47:33
Let's say she she went, can't even explain it, because her situation was bad. They saw because she got into an abusive relationship, I'm sorry. But other other than that, like, as far as the drugs and stuff like that, she cleaned her life up from that part that was just like the dysfunction that happens behind closed doors, or was, until she got out of that. But at the time, I did,

Scott Benner 47:54
all right, so they pick you up at the by the way, I've never even been to a bit this is going to sound very like, I don't actually, is this bougie? I don't know if I've ever been to a bus stop.

Natalie 48:03
You know, I felt the same way. I felt the same way. I never even so at that time, I'm what, 26 and when I got back from Texas, that was the first time I ever had to ride a bus too. I didn't even know what to do, okay? I was like, what? Like, I had asked. I was like, Where do I put this money? Like, you don't put money in here. You need to go across the street and buy a bus ticket. I'm like, oh, okay, even

Scott Benner 48:27
the arguing in public Natalie, like, it wouldn't occur to me to do that. And if I started it, like, if I was with somebody and we were getting loud, somebody would be like, Hey, let's, you know we're in public. Like, let's stop. Like, I know that for sure. It's, it's just really interesting. So okay, what kind of jail do you do? Normal? That's a normal.

Natalie 48:45
Oh yeah, that's how normal people would respond.

Scott Benner 48:49
We're in public. We probably shouldn't be screaming at each other. I live my life under very basic rules, like, I don't do anything that would draw the cops attention. That's my rule. Like, don't, get arrested. I don't want to get arrested. I don't like the I very simple ideas about how to live a happy life. That's at the top of my list, honestly, yeah, yeah, yeah. My brother one time. He's great now, but he was like, a really, like, troubled little kid, like, and my parents were divorced, and, like, I get why, right? And I used to tell him, like, because I was young, I was like, Look, just don't do anything that. If a cop knew about it, they'd be upset about like, that's how I that when I was when I was 13. That's how I talked to my little brother, because it was, like, the clearest thing I could think of to help him. But how long do you go to jail for, though?

Unknown Speaker 49:36
So

Natalie 49:37
I ended up, when I went in to jail, they gave me no time served, meaning my house arrest didn't count, and the 15 days of work release and account so I did three months you

Scott Benner 49:49
owed the whole three months. Okay? And are you taking care of your diabetes at that point better?

Natalie 49:55
You know, I would. I would at least give me myself the long acting. And then I gave myself short acting based on if I if I do what I was going to eat. Well, I think I maybe protect my blood sugar once every few days, right? So for people

Scott Benner 50:09
who's who take, you know, care of the of their health, you know, their diabetes health, can you describe them? How much of a week did you think about diabetes? Like, I'm trying to, I'm trying to show that like, you know what I mean, zero, not at all. No, okay. Like, not at all. The idea that you'd be hurting your health. Ever pop into your head? No, no. But

Natalie 50:37
you also have to think at this time, I was on state assistance. I saw only a primary care doctor, and I, of course, was given only the cheapest insulin. And they okay, they would do my a, 1c never wanted to be like, okay, so you're at 11. You should probably bring that down a little bit.

Scott Benner 50:56
Did you have any understanding of what any of that meant, or what the repercussions were?

Natalie 51:00
I mean, I knew a little bit just like based on like, what my mom has said, I never knew like based on like experience, because my mom didn't have any complications until, like, her last year of death, when she lost her legs. I mean, that her legs, yeah, middle of COVID.

Scott Benner 51:20
How old was she when she passed? Uh,

Natalie 51:21
she was 67

Scott Benner 51:23
okay. Are you okay? Like, now, I

Natalie 51:28
am. I'm good. Now, you know, like, I've been on Omnipod now since I saw my first very endocrinologist at 35 really, 35 Yeah, 35 years old.

Unknown Speaker 51:41
So you know,

Scott Benner 51:42
you're the first person I've ever spoken to who I asked how old they were when they were diagnosed. You're like, I'm not 100% sure. Yeah,

Natalie 51:50
I don't there was no, I've never been hospitalized for my diabetes, like, what so ever. I didn't even know pumps were, like, a thing that, like, helped. I thought you had to buy them out of pocket. I didn't even know until my doctor was like, Hey, let's get you on a pump. I'm like, I can do that. They're like, Yeah, your insurance will cover it. I was like, Oh, I have that kind of insurance. I didn't even know

Scott Benner 52:12
I got fancy lady insurance. I

Natalie 52:14
know, I know my work gives me free something, but I didn't know it was like, this much free.

Scott Benner 52:18
Okay, so Natalie, let's stop for a second. When's the last time you were high at what age 37 All right, three years ago, and in the last three years, you've been taking very good care of yourself.

Natalie 52:31
Yes, yes, I've lost 65 pounds. My a 1c is 6.2 which is the lowest it's ever been for me. Wow, that's great. Yeah, I also just got married a month ago. Congratulations. Like Life is good for me. Now,

Scott Benner 52:49
it took a while. Is it fair to say we have a lot of life left, but is it fair to say that once you had clarity away from drugs and drinking that you were it was easier to take care of yourself?

Natalie 52:59
Oh, yeah, for sure, I still don't, Hey, God, I hate to say this. I hate being defined. Saying, Oh, I'm diabetic. Like, I I really don't like, just like, I don't like saying I'm an addict, you know, I feel like it puts a label on me. And I feel kind of just like, hey, I have this thing that, like, I can share my experience with you, and hopefully it'll help somebody else out. I try not to let even my diabetes run my life, but it does. It absolutely does now, because I care now, and since, you know, watching my mom die, it kind of put like this thing, like, just clicked in my head and it was like, Okay, so let's say the magic number for me, let's just say, in my family history is living 30 or how old was she? She was 17 years or longer than that. I don't even know how to do math. 2727 years. Yeah, 27 years of her having diabetes. What if I only have 27 years to live with diabetes? Like, I'm already out of, like, almost 20 of those. Like, I only got a few years left, and that's what clicked it off for me. I was like, I cannot do to my daughter what my mother did to me. I can't do it. You

Scott Benner 54:07
never once thought I'm using meth. What if I don't have a lot of time left? People with the who use meth don't live very long. Like it was this, like, you get clarity from the drugs, clarity from drinking. Saw your mom pass away and still said to yourself, I might not have a lot of time left. I don't want my daughter to feel the way I feel right now.

Natalie 54:29
Wow, yeah, geez, people, I had gone to COVID and I was pissed off, and it didn't kill me, really. And that's when I got clean. Yeah, I woke up one day and I literally, like, I literally took the bag of drugs that we had just gotten that we couldn't do because we were so freaking sick. I jumped down this toilet and I was like, I was done. It's like, I'm done. People

Scott Benner 54:47
say COVID was bad, but it stopped you from doing

Natalie 54:53
Yeah, yeah. I was pissed. I tried it a couple times. Just couldn't

Scott Benner 54:56
you literally woke up and you thought, Jesus Christ, am I still alive? Yeah,

Natalie 55:00
yes,

Scott Benner 55:00
I guess I ought to pull this together then, yeah, damn. That's ridiculous. Like, I don't mean ridiculous. Like, do you know what I mean? Like, I

Natalie 55:09
like, that's what it took. Yeah, it's

Scott Benner 55:11
ridiculous. That that's what happened where you're like, okay, I'm good. Now I'll stop. Yeah, Jesus, huh? Walking down the street, I passed 50 people. How many of them are doing meth that I'm not aware of it? Oh,

Natalie 55:24
I don't know. I mean, in a way, probably a lot of people think about all the people that abuse Adderall. It's very similar. You can live a double life with it. You really could, like, the when I was doing meth in my 30s, like, most recently, before I got clean, like nobody would have known that's a double life. I kept my corporate job. I actually I had a side business doing Turo. I mean, I would flip cars. I'm buying and selling like I

Scott Benner 55:50
got two streams income over here, Scott. I got one that pays the bills and one pays for the menu. Yeah. Well, to pay for that, yeah,

Natalie 55:56
exactly. How

Scott Benner 55:58
old your daughter now? She's

Natalie 55:58
going to be 21 in a couple weeks. All

Scott Benner 56:01
right, has she used, is she an alcoholic, anything like that, or does she, like, run the complete opposite direction? To you? So far from what

Natalie 56:09
I know of, she ran the complete opposite direction. However, I see a lot of the same behaviors where that switch could flip on her. Like, it could totally click in at any time for her, but I've never had to deal with her. Like, what does that answer? Anything that like, I've never, she's never, like, been in trouble for it. Well, she's always kept a job, she was in school, like she was a decent person, a human being, so far,

Scott Benner 56:38
if I described so, look, this is, this is, this is the less fun part of my job. You're very much like you described your mom, like, great when our great problem, when I'm a problem. And if we, if I get your daughter over here and I read that aces list to her, how many of those things do you think she's going to say, Yeah, I grew up with that stuff. Absolutely,

Natalie 56:57
at 100% all of them, however, the little flip with that is is that while my sister had my daughter when nobody knew there was all that physical abuse going on in that household, that's what most of her childhood is going to be like. The only reason like my daughter C when I let my my sister take care of my daughter because I thought she was going to be in a better situation, my daughter was told that me and her dad didn't want her. I was told that she didn't want to come home and live with me. So when I found out that there was actual physical abuse, or just abuse in general, going on in that house, she didn't have a choice anymore, and I wiped her off and she came to live with me. She didn't have a choice. So

Scott Benner 57:38
your sister decided to tell you one thing while telling your daughter another thing, because she thought that your daughter was better off with her, and that was making you think that your daughter didn't want to be with you, but then you found out that there was abuse between your sister and her spouse, and then you use that to extract your daughter,

Natalie 57:59
correct? Yeah. So my my daughter, has probably been more witnessed to the kind of views that you see on, like, lifetime TV, right? You know, like the men abusing the wife and the children, than I ever did growing up. You know what I mean? I witnessed the views happening, which was my mom was, like, drunk and crazy and wild, you know. And it was totally different kind of abuse, like this ban was the kind of abuse that and he's a band that didn't drink or do drugs like he's just a mad, angry person type abuse. Did

Scott Benner 58:28
he abuse your daughter like hit her little bit, little bits have

Natalie 58:32
come out of some of the things he's done. As time goes on, she's gotten more open about what's gotten on in that household. I don't think he physically abused her. He almost had a couple times Okay, and my sister would jump in. If

Scott Benner 58:47
you were your daughter, what would you want from you? I was my daughter. What would you want from you? Like, yeah,

Natalie 58:55
stay the way I am now. Okay? I would hope so. Anyways,

Scott Benner 59:02
you think you can do that?

Natalie 59:03
I do think I can do that. You know, there's, of course, there's no 100% guarantees. But I also think, given the tools of, you know, like a a sponsorship therapy, you know, keeping a job, you know, doing things like with my fitness, you know, I decided to become a personal trainer on the side. You know, like, constantly improving myself is only going to keep me, like, doing better. Yeah.

Scott Benner 59:28
Do you have any other autoimmune issues? Do you have Hashimotos or anything like that? I do. I do. I thought you did? Your mom have it too? You want to

Natalie 59:37
get into medical history? Oh my gosh, my mom. Yeah, she has the diabetes. She just had an under active thyroid. My dad actually had thyroid cancer when he was 15, and had his thyroid review. And my sister had Hashimotos, and then she also got thyroid cancer, and then she also has a heart condition. And

Scott Benner 59:55
Ms, you guys manage the thyroid well. I mean. Know, I mean, you do the blood work every six months and stuff like that.

Natalie 1:00:05
I do. I do. I feel like, I mean, if you really want to get into, like, the healthcare part of it, I really think that there could be more done. I do watch what I eat, because I do notice that, like, what I eat, not just the diabetes. I get inflamed, and I learned recently about flare ups and Hashimotos. Like, I didn't even know that was a thing,

Scott Benner 1:00:23
like your TSH, maybe spikes goes up higher and, yeah, yeah.

Natalie 1:00:29
They're like, Oh, you're having a flare up. I'm like, what does that mean? What is this? I didn't even know. Do

Scott Benner 1:00:35
you keep your TSH, is there a number you keep it at? Or do they just tell you it's in range?

Natalie 1:00:40
They just tell me it's in range. I don't actually know what my my numbers are. Yeah,

Scott Benner 1:00:44
we would like to see it under two. But the reason I bring it up is because the inflammation from the autoimmune in general, right? And then a thyroid, you know, anxiety, other I mean, you can look through everything that kind of comes with with Hashimotos when it's unregulated, some of the things you described could be related to that. I mean, people who have autoimmune issues are now finding, like, a lot of value with GLP medications, right? But GLP medications at the same time are also being talked about, about reducing people's other addictions. And you just kind of, like, start wondering about, like, what's all in the soup? You know what I mean? Yeah, yeah. I would start by making sure your thyroid, like, I'm trying to think of ways to give yourself, like, long term success so you can be the person you want to be, and your daughter gets the mom she, you know, deserves, and all that stuff. Like, like, I would talk to your doctor and say, Look, I want to know what my TSH is, and if it's under like two 2.1 or if it's over two 2.1 I'd like to maybe ramp up my medication a little bit to bring it under, to see if I have any alleviation of symptoms. I have more mental clarity, energy, like all these little things that impact people, you know, yeah, Jeez, what made you want to come on the podcast? Well, first

Natalie 1:02:00
it was, hey, that's cool. And then, like, I listened to other people's story, I was like, Yeah, I can relate, like, all those after dark ones I'm totally obsessed with, because those are my people. I get them also. I think a real part of me saying this person who I have become is also about sharing my story, okay, you know, and the way I felt I could relate to other people, hopefully somebody else can relate to me. And there's so many people on that Facebook group, I mean, it'll just reach out more friendships, yeah, and I think that's actually how it started at this because somebody had made a comment about having to go to jail and being diabetic. I was like, Hey, let me tell you what it was. Blah, was like. They made sure I stayed alive. Yeah,

Scott Benner 1:02:45
I was gonna say, were you actually taking care of yourself? And, like, what was that three months like with diabetes? So when

Natalie 1:02:51
I was in tent city, it was because everybody got taken into, like, the doctor, the healthcare area twice a day, once in the morning, once at night. So that's when I would go so they would test my blood sugar, they gave me the long acting insulin once a day, and then they would give me the short acting based on what my blood sugar is. But before they would test your blood sugar once, then they made you drink a liter of water, wait 15 minutes, and then they test you again, and then they would no steer insulin based on that. Yeah, they can't be alive also, yeah, they kept us alive. Yeah, yeah. And it was, like the middle of summer in Arizona, and it was just warm. I mean, that was the least of

Scott Benner 1:03:33
you wait the condos you're in on air conditioned. What's going on? So

Natalie 1:03:38
10 city is literally army tent. Yeah, you sleep outside. Yeah.

Scott Benner 1:03:42
Tell people about it, please. Yeah.

Natalie 1:03:44
So, I mean, they've taken it down now, which I guess is good, I don't know, but you literally, it's like a dirt, rock area, and there's, think there might have been, like eight tents in this chain link fence that I was in, and then under each tent. And you know that they're the big army tents that roll up on the sides and everything. Yeah, there's one big, giant fan that pushes air through one side to the other. And I think there was, honestly, there might have been 12 months. I could be wrong on a number per tent. Yeah, there, I want to say there's about 12. There might have been less than that for 10, and it was considered like, people who went to 10, I had to fight with a sergeant to get out to tent city, because you get less time. You'll get, like, two for ones, just for being out there. And you get to work,

Scott Benner 1:04:31
if you're willing to be incarcerated in the tent, it shortens your time because it's correct. It extra sucks, yes,

Natalie 1:04:38
and because you get put to work. You know, you go you go to food for inside the jail. You could be put on the chain gang. You get to work with the animals. But I wasn't allowed to do any of that stuff because of my diabetes. So I gotta rake rocks. Like, literally, I just raked rocks. I literally took a rake, walked up and down. Was this. Usually punishment, like, if you had your shirt on top, you had to break the rocks. But that's what I did to keep myself busy. I just break the rocks. That

Scott Benner 1:05:07
was your day. That was my day. What goes through your head? What do you think about with all that free time? How good I

Natalie 1:05:13
felt, these clean, really clarity. I could go I could go to sleep and sleep. Well, I could take a nap whenever I wanted it with, well, I mean, it was hot, but, I mean, you sleep. I had so much anxiety when I had to go home, because I knew it would just start up again. I knew it

Scott Benner 1:05:30
what would start up again by using okay, even though I knew it so you were, you were better off raking rocks in tent city than you were going to be when you got home. Yeah,

Natalie 1:05:41
it was kind of like Girl Scout camp, like, it's not, like, it sounds stupid, but, I mean, you got a lot of people in there that were, like, it was a lot of DUI. So, you know, you had your nurses, you had teachers, you had your moms. You know, it wasn't, it wasn't like hardcore criminals, if you know what. I mean, it was people who made mistakes and that have lives on the outside. Well, you could hear about other people's lives. You get, I don't know, you met some cool people. Of course there, there were some that were, I don't know, you could tell which ones were the tweakers, but I don't fit in with those, because I had this like, I didn't fit in with what they looked like or even how they acted. So it wasn't a tweaker, like, person, even though I did it so interesting, I know it is weird.

Scott Benner 1:06:25
Is the thought I have anxiety because I know I'm going to go home and do drugs again, or are you planning on doing them? Like, are you standing there going, Oh my God, I feel great, but I know, and I leave here, this is what I'm going to do. Like, did it feel like a decision you were making or a thing that was going to happen to you.

Natalie 1:06:41
I didn't get out. Of course, I didn't get out thinking, Oh, I can't wait to go, you trust I'm just going to go, you drugs, call everybody that I used to hang out with. I think it was just more of like that depression, of knowing I was like, stuck and I didn't know how to get out of it. You know, at that time, in my early 20s or mid 20s, I didn't know how to keep a job at all, like my anxiety was so off the charts. I didn't even know how to talk to people, like, if people used to come up and talk to me like I would cry, like I used to not even be able to get gas in my car without somebody being with because I was so scared all the time. And that definitely stems from my childhood, for sure, why? So I don't know. I was just always so scared, like, even in school, if a teacher would call on me, like it would take everything in me to not shake and cry, because I just didn't want to talk. It was crazy.

Scott Benner 1:07:33
So I think the idea is, if you grow up around alcoholism, there's this feeling that something's always about to, like, happen, and you kind of can't tell when it's going to happen.

Natalie 1:07:46
Yeah, you're like, in this constant fight or flight mode, yeah, yeah. I remember going to sleep as a child that was like that,

Scott Benner 1:07:54
just waiting for the other shoe to drop, like, when? When's this gonna happen? Like, and then how do so, if I stay quiet, maybe it won't happen. Or if I'm quiet, maybe they won't see me when it's happening.

Natalie 1:08:05
So I think it's more of like they won't see me. Okay, so

Scott Benner 1:08:09
once those people go back crazy, if I'm not on the radar, maybe I get through this unscath, yes, right, exactly. And that sticks with you as an

Natalie 1:08:18
adult, for sure. Even now I'm like, okay, like, I don't know, just like everybody around me and like, what I do, it'd be like, Okay, I'm just going to get a little bit further in my seat. Just stay here, do my time, go home, as long as nobody knows what I'm doing. We're good. Like, no news is good news.

Scott Benner 1:08:35
How does it work at work, though, when you're at like, a corporate job, like, you don't have those feelings there. I

Natalie 1:08:41
don't anymore. I've really, I've been promoted three times already, like, since this job, like, what I am doing is being seen and I'm being heard. And kind of crazy, how much I've come out of my skin. But I also think that, like, how much, like, I have grown like, even talking to you this would, I would have never even been willing to do this years ago, but with me, like I lived in the halfway house on an Well, actually, mostly on for about four years. I stayed there because it was comfortable. And in that return, I had to get a job, and I had to learn how to like function in life, and that's what made me all of a sudden grow up. I didn't become an adult until my late 20s. I still feel like I'm probably, maybe like, 3031, I'm probably at the same, like, you know, like, financially, I'm probably the same as somebody in the early 30s. Okay,

Scott Benner 1:09:28
I was just looking here while you were talking growing up with alcoholic parents. Have significant, lasting effects on child's development. Some ways are you can have emotional and physical effects, like increased anxiety or stress, depression, low self esteem. We didn't talk about your self esteem. Is it something that's been better over recently, or has it always been okay?

Natalie 1:09:48
I'm sure I've always had really low self esteem. I kind of feel especially younger, younger I definitely did. And since I've been an adult, like, since I've been to jail, like, when it comes to my physical appearance. When I went to jail, if you want to feel good about yourself, go take a shower with 50 other women. You realize that everybody has beautiful bodies, like in their own way. Or you're like, holy crap, my body looks great compared to her. And I know that's that's awful to say, but like,

Scott Benner 1:10:16
it's true, jail showers made you feel good about yourself.

Natalie 1:10:19
Absolutely. I was like, wow, I don't have any stretch marks. I've had a kid. Did you know what I mean? Like, oh, I got a little pooch. Like, you know what I mean? When you prepare yourself, I'm like, Okay, I'm not doing

Scott Benner 1:10:33
nobody cares either, right? Exactly,

Natalie 1:10:35
yeah. But when you think about self esteem, sometimes, like, when it comes to like, even, like, with me applying for jobs, and these corporate jobs that I've worked for, and I work for the big international company, it's like, do you tell them about your past? Because it's going to come up in a in a background check. Like, how honest Do you want to be? Or how honest do you need? So far, I've been completely honest, have

Scott Benner 1:10:59
you really? And how's that gone? Because meth is a thing I would think would just turn people right off.

Natalie 1:11:04
Most people have been very supportive, like, Wow. I would never guess that is crazy. I want to hear a story. You know, I'm not always willing to tell them a story unless they actually ask something specific. I do know my current boss right now comes from law enforcement, and so for her to immediately flip the switch of always, which I I knew about the conversation I had with her, she was very judgy of people with criminal backgrounds, right? For knowing me has completely changed,

Scott Benner 1:11:38
you know, so having these conversations has helped me a lot too. Yeah, that's why I'm always sort of just looking for, like, how did that happen? Or like, you didn't ever think this way or that? Like, why not? I wonder. Like, not like, why didn't you? But like, I wonder why you didn't. And, you know, like, yeah, it's just, it's a different way of thinking about it. By the way, behavioral and social effects difficulty with relationships. Children of Alcoholics struggle distrust, and they find it challenging to form healthy, stable relationships. You, of course, are at an increased risk of substance abuse. Yourself having behavioral issues, having academic struggles, which I think happened, didn't really have an opportunity to happen to you because you were doing well right up until you weren't at school. But you know, there's your point. Once it happens, you're in trouble, physical health neglect, developmental delays, chronic stress and poor living conditions can lead to delays in physical and emotional development. Long term, some children of alcoholics may develop a strong drive to over achieve or to be perfect and attempt to gain approval or avoid the chaos associated with their parents. Addiction. Many children of alcoholics caretaker role, feeling responsible for their parents well being, which can eventually lend lead to burnout and resentment. That's not going to end up it sounds like that might happen to your sister, actually? Yeah, absolutely, yeah. But increased resilience, despite the challenges, some children develop strong coping mechanisms and resilience that may they may become highly independent, resourceful and empathetic, though these traits often come at a cost of their own emotional well being. Sound like you? Yeah, absolutely, yeah. About that, well, don't make a baby if you're drinking a lot,

Natalie 1:13:12
because no more babies. For me, I'm

Scott Benner 1:13:14
talking to everybody else. You're 25 right now, and you're like, I just drink through the weekend. Now's not the time to start a family. Maybe because 40 years from now, whoever I am, 40 years from now, is going to be talking to your kid going tell me what your mom did. And, you know, very avoidable. Natalie, lately, I've been really overwhelmed with how avoidable so many of the stories I hear are, whether it's health and, you know, just having a doctor who understood a little better or took five more minutes, or you know that, or if it's, you know, a parent who, you know, doesn't make a baby when impregnated during an FBI raid. Because we can all just make these very avoidable decisions, like how much differently other people's lives turn out. It sucks that when you're 19, you don't have the ability to know your 21 year old daughter. Because if you were 19 on Christmas morning and you felt that love that you have for your kid right now, and this guy was like, hey, you know what we should do? You'd be like, hey, you know what? Get a condom buddy, because I don't want to disappoint this little girl that I love so much. I mean, I know it sounds ridiculous, but in my mind, like lately, I've just been I just, I keep hearing stories and thinking just if you just would have zigged when you zagged, or if somebody would have given you a chance, or, you know, a parent would have done a halfway decent job for you. Yeah, you know, you wouldn't hear all these stories anyway. You're bumming me. The out is what I'm saying. No, I'm really, I've been sincerely, a gum I'm really happy that you, that you chose to share the story as much as you think. Like, my story is I went to jail, you know what I mean, like, and I had diabetes. Like, I don't think that's the story at all. I think the story is that. You're, you know, two probably well meaning, lovely alcoholic, 20 year olds, you know, had you 40 years ago? Yeah, that's just kind of how I see it. But anyway, yeah, absolutely. How was this for you? Any good? It was cool. I liked it. Did you good? I'm glad. How do I do because I'm always afraid that I'm gonna, like, straddle the line on the wrong side when I'm trying to have these conversations.

Natalie 1:15:25
No, you gotta, you gotta ask the the tough, the tough questions. Thank

Scott Benner 1:15:29
you. I appreciate that. Like, the fact,

Natalie 1:15:31
the fact that you're like, uh, like, why? Like, you realize it just doesn't seem normal,

Scott Benner 1:15:38
you know, like, it's funny. Like,

Natalie 1:15:39
you do realize this, right? Yeah, you're

Scott Benner 1:15:42
hearing what you're saying, aren't you? Like, I God, I can't think of the one is recently it went up. You maybe, you know, because I think you listen to these. I stopped in the middle and I said, Hey, PSA, don't let a guy who lives in a van get you pregnant. Like, I was like, I was like, I don't know. I didn't realize that needed to be said, okay, but punch him in the face and roll Yeah? And I wonder if you realize, or people who find themselves in the situation you've been in over the years, if you knew that like 50 people like me heard your story, it's where it feels like nobody cares about each other, right? Like people who end up growing up in your situation say nobody cares, nobody understands, and people who aren't in your situation are like, You ought to, like, take some personal responsibility and get out of this, not understanding. I mean, it's why I read the ACES list. It's not personal under it's not, I mean, it's not you not taking control. Somebody dug a hole 20 feet deep and then put a trap door in the bottom of it, then dropped a baby in it. That baby was you, and said, Hey, see if you can climb out of this hole. Yeah, yeah, absolutely. The people I'm gonna give you to help are a lady who pulls knives on people, drinks a lot, does drugs, a guy who's doing better than her but isn't doing that much better than her. Don't worry, though, one day, her sister will help her by giving her meth, like this baby's not getting out of this hole. Yeah, you know what I mean? And those are the people like You're like the worst episode of Dora, the Explorer, like your monkeys high. You know what I mean? It's a backpack that's drunk and a monkey on meth trying to help you get through the jungle. And you're like, and they're like, oh, no, no, we ain't getting you out of here. You nailed it. So you're in this you're a baby in a terrible situation. And by the way, the people who raised you very well could have been babies in terrible situations at one point. Yeah, someone's got to stand up and push the guy in the van off of them, like work. And I'm not saying it's up to women to make good like, you know, it's up to guys to make good decisions. Like, people just need to make better decisions in pivotal moments. And then all these very unavoidable things don't happen, absolutely. But it's not what happens Natalie and then in the end, it becomes, you know, it's every four years time to run for president, and so we all spend two and a half years talking about the things leading up to the Jesus. It feels like somebody's always running for president, but people have these conversations in their real lives, and somehow always boil it down to, well, they should take personal responsibility. Well, yeah, they should. But what are you going to do? Like the baby's in the bottom of the hole and you're yelling down to it, take personal responsibility. Yeah, it's true. Yeah. I don't know what to do. What if we just said nobody could have a baby for like, five years? Do you think that would give everybody time to reset or something? I don't know.

Natalie 1:18:38
You know, I really feel like the newer generation is having babies less and less.

Scott Benner 1:18:42
Yeah, but that's not good either. We're gonna run out of people,

Natalie 1:18:46
because the ones that are having babies are the ones that shouldn't be having babies,

Scott Benner 1:18:50
even if you say like, you ever noticed this? But this is gonna sound very generalized, and if you're a person with a lot of kids, I'm not talking just please try not to get upset. You ever noticed that people who are like all like, wow, they really do seem to have it together. And they really are doing well. Those people have one or two kids, and then, like, the guy who's got, like, a sign on their front yard that says something very strange that you drive by every day and go, like, I hope that guy doesn't shoot me. Like, he seems to have seven people, like children, and you're just like, how are we even gonna, like, rebalance this? Like, I just need a couple of common sense people to make some babies. I don't know. It's just very strange. I don't know how any of this gets fixed for you personally or for like, because now your daughter's 21 the real hope here is that your daughter waits to have a baby until she's sorted through all of her crap. Yes, that's pretty much all we that's what we should all be doing, not just people who are your kid, but my kids should do the same thing. Everybody. Just get through your before you bring someone else into your mess. You don't mean exactly super simple. Yes. Yes, but I don't know. It's hard to do. It just really, I don't know, you go to a party and my guy's a pretty girl. Next thing you know, you're like, we could probably have a baby, and you're too young to know what's wrong with you still. You know what I mean? Took you to 37 to figure out what you needed to fix. Yeah, I had problems I didn't know about my it took my wife being like, hey, that stuff's not okay. And I'm like, Oh my God, she's right, but I actually had to listen to her and then, like, work over and over again at trying to, like, level that stuff out. And then she had do the same and and we still had kids too early, so my kids are going to have problems that were avoidable if we would have waited longer. But I don't know. I don't know the answer to any of this. I'm just talking, but, yeah, sucks. You know what I mean? Like, I just feel, I feel better. It

Natalie 1:20:48
also, it kind of probably sucks. Also, being your position, hearing all these things about other people, and you're constantly, like, with the what the like, all the time. You know, I'm

Scott Benner 1:20:59
also tired today. I'd

Natalie 1:21:00
be able to do it. I just feel like, yeah, it's like, it is what it is, you know, what? What can I do? I just make it better, you know, try to help the next one. You know, let's I had a very

Scott Benner 1:21:11
long weekend, and it's funny, because I think if I told you what I did this weekend, you'd be like, if I got that much effort out of my parents spread out over 10 years, I would have been okay. Arden came home from college end of her sophomore year, and took her a while, and then she's like, I don't want to go back there. Here are my reasons, and some of her reasons were very, very poor direction from staff at the school. I am gonna, at some point tell the story of like, something that a teacher said to her that will absolutely anybody who's paid for five minutes worth of college, it will just lure you. Oh, and she's like, I I'm gonna change directions. You know, took her a while to, like, get up the courage to even tell us that. Then she told us, but so she's starting up at a new college next month or next week. Excuse me, but we had until next Monday to get her stuff out of her her place 700 miles from here. Oh, on Friday after Arden got sick last week. So our last week was we came home from vacation. Arden got very sick. My father in law passed away. We went to his funeral. Three days later, we had to get into a car and drive 700 miles to go pick up her stuff, but she was still sick. Oh, so she and I drove that time. She drove in one car because we needed both cars to bring it back. I drove in another one. We left our house at six o'clock on Friday, drove until like two in the morning, got a hotel room, slept, got up at eight o'clock, drove eight and a half more hours, got there, had dinner, went to sleep, got up at 5am packed her car up, and drove back home. Oh my Yeah. So I've driven 1400 miles in the last 48 hours or so, wow. And I'm I'm tired. And then on the way home last night, there was this horrible rainstorm on the East Coast. And so for about three hours last night, I was white knuckle driving, not able to see five feet in front of me. Oh, gosh. Now on top of that, knowing the knowledge of like, every decision I made my daughter was behind me in a car, like, counting on me not to run into something or hit something, yeah, and so it was horrible. I mean, I'm not kidding like I've been alive a long time. It's the worst, worst weather I've ever driven in my life. And we got home, decompressed, fell asleep, I woke up. When I woke up, my son was like, Don't forget, you have to take me. I'm like, Oh my God. Like, I so I'm like, getting dressed, I take him to this thing, I get home, and then I ate two eggs, and now I'm talking to you, dang. I feel like I'm doing a bad job today. I don't know if I am, but I don't feel as clear as I want to be to have this conversation with you. Well, do you at least get a rest after this? Arden has a doctor's appointment she has to be at in three hours that I'm taking her to. Oh, in between there, I have nothing to do,

Natalie 1:24:02
go take a nap. But

Scott Benner 1:24:04
am I wrong? Like, if we got into a time machine and went back and you said, Mom, Dad, I need you to drive with me 1400 miles, round trip in two days to help me with something. Do you think your parents would be like, Yeah, let's go at this stage. Absolutely no. How about back then, back then 20 years ago, maybe, maybe, like, if

Natalie 1:24:25
I wasn't, like, an attitude, like, I think so, okay, yeah, only because there's, there's been a couple times where my parents had driven, taken a few trips to go save my sister in a different state, type thing, you know, like, or try and change her situation around. When she wasn't doing well, they put a lot of effort in my sister. Yeah, I think they just kind of backed off with me being like, we can't save her. Oh,

Scott Benner 1:24:48
it's interesting, though, isn't it, to watch people who are so steeped in a problem that even though they want to and I would believe that, I would believe that your parents love you and care about you, and why. Want to do something good for you, when you don't know what that means, and you're put into that situation, then the help you give is often it's help on that level. It's not the kind of help. It's actually going to get you out of a thing, correct? Do you think that you actually needed the legal trouble to break free of all this? Absolutely? Yeah, everyone, 100%

Natalie 1:25:20
absolutely being even though I was at a very limited capacity on being a good mother, as soon as I became a mother, it changed everything to me, like she is the blessing I didn't know I needed in my life. You know, a lot of the expenses that her life. You know, unfortunately for her, she's had to deal with a lot of trauma and pain that she didn't deserve, but she saved my life. She gave me a reason to want to be better and to do better. Yeah,

Scott Benner 1:25:50
it's got to be something. I mean, it's part of the human condition. It just has to be, because the amount of people who will tell me all the time like, you know, I didn't really take good care of my diabetes until I had a baby, or wanted to have a baby, or met this girl, and I knew like I wanted to be married and have a family, and so I had to do this thing. Like everyone, every adult who struggled through their teens, early 20s, with their diabetes, who no longer does, has some version of that story. I mean, not everyone, a lot of them, you know what? I mean, like some version of, uh, I couldn't do it for me, but I was able to do it for somebody else. Yeah, that's that story, and that is what happened to you with but with drugs instead. Yeah, diabetes, absolutely. And then your diabetes care came along after you were clear and you felt better. Yeah, got it all right, yep. Well, I appreciate you doing this with me and for laying that out like that, because I believe more people than we would want to think are in your situation.

Natalie 1:26:53
Yeah, unfortunate, yeah, but yeah. Well, thanks for having me, though. Are

Scott Benner 1:26:57
you kidding me? Thanks for having me. You don't send a note about Tent City and jail and meth. I think a guy

Natalie 1:27:05
already get more into the tent city thing. I know a lot of people are really excited to hear about that. I mean, kind of hard to talk about. Also, you know what? I mean, it's like what you see like on TV and what you hear about and read about, that's how it was. Yeah, you know,

Scott Benner 1:27:20
listen, I don't think anybody listening doesn't hear 10 city and can't fill in the blanks. You know what? I mean? Yeah, I mean, you're arrested for something. It's not nothing. I'm not saying it's nothing, but you know, it's not it's more socially acceptable. Well, you didn't commit a crime with a grand gun, you didn't hurt anybody, like, that kind of stuff, like, right? So you're gonna go to jail, and rightfully so. That's fine outside in Arizona in a

Natalie 1:27:43
tent with a fan. Yeah, that's the part that's crazy about it. Yeah, no,

Scott Benner 1:27:47
it's insane, right? And, and you said you lost weight. Did you lose weight there?

Natalie 1:27:51
What the 65 pounds? Yeah, no, I lost, I lost that when I decided to get so then the last three years, that

Scott Benner 1:27:58
was the sober that being sober helped you with that. Yeah? Okay, yeah. Geez, you're in a good relationship now I am good for you. Excellent. Look at you. Yeah, you know I thought I was gonna say goodbye, but I wanted to reiterate, as crazy as this has all been, and God bless you, it's been crazy this story. You're only 40, you know what I mean? Yeah, I know you're only four. I know you're laughing because you're like, I know I've lived like, 17 lives, but like, but you're only 40. Your daughter is only 21 there's a real world. I mean, it's been three years. You've been clean. There's a real world where five or 10 years from now, this all just seems like a distant memory.

Natalie 1:28:35
It already does seem like a distance memory, like, I have a hard time believing a lot of the stuff that I did and I went through, like, Was that really me? Like, but I can't forget it. I don't want to, I don't want to forget how horrible I felt, the depression that came with it, the sadness, the loss of hope. That's the part I

don't want to forget. Yeah, you felt, hope, you know, but like, it's like, I I stole cars. Like,

who does that? No, I mean people. I mean, that's kind of cool at the same time, like I stole cars, like I got a mixer. I mean, you

Scott Benner 1:29:15
can see it's so crazy that you can see it from both perspectives. You're like, who would steal a person's car? This is horrible. And how cool is it that I stole a car

Natalie 1:29:24
exactly. I mean, who's gonna do that?

Unknown Speaker 1:29:26
I mean,

Scott Benner 1:29:27
I take your point while you're saying I was, like, you have now you have a foot in both sides. But like, yeah, how interesting. It'll be really interesting to see how you talk about it 10 more years from now. You know what I mean, yeah, yeah, yeah. If you'll keep changing, if you'll be able to stay, like one foot on both sides of understanding of this, or if, as time passes and you are, quote, unquote normal for longer living a normal life, if you won't look back more harshly on it as time goes by. Oh, yeah, okay. Probably. Okay, interesting. All right, Natalie, I'm just say thank you, because I feel like I could talk to you forever, and it's not fair to anybody, because, you know, it's getting long. Thank you very, very much for doing this. Would you hold on for one second for me? Yeah, thanks.

A huge thanks to a long time sponsor touched by type one. Please check them out on Facebook, Instagram and at touched by type one.org. If you're looking to support an organization that's supporting people with type one diabetes, check out touched by type one. You can use the same continuous glucose monitor that Arden uses. All you have to do is go to dexcom.com/juicebox, and get started today. That's right. The Dexcom g7 is sponsoring this episode of The Juicebox podcast. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. You


Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

#1360 Best of Juicebox: Jesse Was Here

Scott Benner

Originally aired on December 13, 2016. 

Sensitive topic - please consider not listening with children present.

Michelle has been a strong advocate in the “d” world since her son, Jesse, was diagnosed with Type 1 diabetes in 2000 at the age of 3. After the sudden loss of her son at the age of 13, she continues to advocate and educate.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT


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
Welcome back, friends, to another episode of The Juicebox podcast.

This episode originally aired on December 13, 2016 it was episode 90 of the Juicebox podcast called Jesse was here. It's marked as a sensitive topic, and at the time, I wrote, please consider not listening to this with a child present. Michelle has been a strong advocate in the diabetes world since her son, Jesse was diagnosed with type one diabetes in 2000 at the age of three, but after the sudden loss of her son at age 13, she continues to advocate and educate. I'm running this today as part of Diabetes Awareness Month to memorialize Michelle, her husband, Jeff, Josh and Tammy Stahl and Barry Sievers. These five people all part of breakthrough T 1d ride team recently passed away in a tragic car accident. Please keep Jeff, Michelle, Josh, Tammy and Barry in your thoughts and prayers, and think of their families and loved ones. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, please Always consult a physician before making any changes to your health care plan.

This show is sponsored today by the glucagon that my daughter carries. G vo hypo pen. Find out more at gvoke, glucagon com, forward slash Juicebox. This is a content warning. This episode of the podcast deals with life and death. As I know that many of you listen with your children. I just wanted to let you know that you might want to skip this episode with your kids.

Michelle Bauer (Alswager) 1:54
I'm Michelle alsweger. I've been involved in the world of diabetes since my son, Jesse, was diagnosed at the age of three on march 3 of 2000 I became a director of jdrs in those early years. I helped begin some ski snowboard camps called riding on insulin, which my son participated in, and I kind of stepped away from diabetes for a few years, my son was kind of sick of talking about diabetes, so I took a job at a woman's magazine and just kind of volunteered my time in the world of diabetes. And then on February 3, 2010 my 13 year old son, Jesse, passed away from his type one diabetes, and I became an advocate, more so for people who also have lost their children to type one diabetes throughout actually, all over the world, I mentor about 100 families through a private Facebook group, getting them connected to each other so that they have the support that they need. That's

Scott Benner 2:54
really amazing. Oh, okay, so how old was Jesse when he was diagnosed?

Michelle Bauer (Alswager) 3:00
So Jesse was three years old when he was diagnosed.

Scott Benner 3:03
What was the presentation? Was it average? Normally? Yeah, it

Michelle Bauer (Alswager) 3:08
was every typical, you know, everything he was, the little, skinny three year old boy, all of a sudden, started wetting the bed again. And I was kind of flustered about it, because we had a water container in our refrigerator, and I caught him getting up in the middle of the night, getting himself water. I thought he was just fascinated with the fact that there was a spigot that he could mess around with, but it turns out he was just really super thirsty. And it was a Friday afternoon, and I was ignoring the warning signs. I didn't want it to be diabetes. I grew up with five aunts and uncles with type one diabetes, my grandma raised five and back in the day when insulin, you know, came in a glass syringe, and it was even before urine test strips. I was around people who use test tubes to check their urine for all of that. So we, you know, the typical signs took them to the emergency room. It was one finger poke. Simply, I was very fortunate that there was no misdiagnosis, and they just simply said he has diabetes. And so

Scott Benner 4:06
you, you had a fair feeling from your your past, your history and your family, that that's what was going on. Yeah,

Michelle Bauer (Alswager) 4:13
absolutely, I definitely wanted to be in denial and but you know what, there was also that point where, you know, I'm driving to the hospital and I'm, you know, saying out loud to whomever the universe, you know, please don't let that be diabetes. And then at the time, I was thinking, Well, wait a minute, I hope it is diabetes. Don't, don't let it be something like leukemia that could possibly take his life, right? Never occurred to me that it could possibly take his life.

Scott Benner 4:38
Okay? So, three years old. Gosh, that's a while ago now, injections like, like, just, there's no glucose monitors or stuff like that right at that moment.

Michelle Bauer (Alswager) 4:50
No, there were meters when in 2000 so he had meters. He actually, at the age of five, went on an insulin pump. Okay, he was one of the first kids in our area to go on at. Because I fought with the endocrinologist to make that happen. And actually, you know, if you flash forward to 2010 he actually did have a continuous glucose monitor. He actually didn't wear it very often. It was at a time where they were still a little bit sickle, and he decided he didn't want to feel like the front of an airplane, you know, dashboard. He felt like were too many devices hanging off of him at the time.

Scott Benner 5:27
So was he? Was he wearing it at the time of his

Michelle Bauer (Alswager) 5:30
passing? No, he was wearing his pump. He was wearing a pump. Okay, so,

Scott Benner 5:33
okay. So I think we should just dive right in, because, like I told you before we started recording, it's, I always think to talk to you, because it always becomes my concern that, you know, inevitably, someone passes away. And I don't want to say how frequently it happens, because I don't know it. It feels like at least once a year you hear about someone that that's lost their life, who's had type one diabetes and living with it. And then it's always my fear that when people see that they that they become more cautious about their own care, but maybe in the wrong way, maybe in the way where they're like, Oh, I'd be happier to accept the high blood sugar because, yeah, maybe they kind of incorrectly think that the way somebody's passed is just because their blood sugar has gotten very low. So

Michelle Bauer (Alswager) 6:15
yeah, your podcast is timely, because this has been a topic that there's many of us. They've been talking about this topic, the high blood sugars, right? Yeah, Derek rap, who is the jdrs CEO. He and I have been conversing about that exact topic, and I've been talking with beyond type one about that topic, because I think it's, it's phenomenal, right now, I'll back up just a little bit. When Jesse, when Jesse died back in 2010 nobody was really talking about death due to type one diabetes, right? We're all kind of scared. We don't want to talk about it. And let's face it, endocrinologist didn't really tell us that diabetes was something you could die from, right? So, you know, it was something we said, no, just take good care of yourself. You live a long, happy life, right? So when he died, because I had international attention from a documentary I had done. People knew me, and so they thought, oh my gosh, if this can happen to this mom, it can happen to any of us. And so it puts everyone in panic. And so I think every time you hear of a death, and you know, you said, once a year, I hear from someone at least once a week that has lost a child to type one, at least once a week, some become more public than others, because some people just, you know, when they when they passed away, they their way of dealing with it is to kind of go inside. They're they're not going to be proactive, and they just needed, they just, that's how they're going to grieve. So what's happened is, everyone talks about dead in bed, right? Which is, I'm so afraid my child is going to have a low and he's not going to wake up in the morning, which is rightfully so. I get it, and, you know, it's a fear to have. That's why CGM are so amazing and alert dogs. But what people don't think about, and they're not talking about, is the high blood sugars. The one thing I've learned through all of this is, I call it the dangerous cocktail. The dangerous cocktail. Everyone's got their eye on those low blood sugars in the middle of the night. They're waking up in the night. But I don't see parents panicking as much when their kids are at a 500 or their meters are just reading h i They're not testing for ketones. I know a lot of families don't even own keto strips. I know a lot of adults with type one that I work with in our endurance community don't carry keto strips, which they don't realize. The dangerous cocktail is this. This is what I've learned from the depth is if you have a high A, 1c and then you tack on and you add that you have a high blood sugar right now, and you have large ketones, that is a recipe for disaster. So like, for instance, if you have a teenager who's currently an ANC of 12% their bodies, and I'm no medical expert, right? I'm just, this is my opinion. And what I've seen, of course, is there if their blood sugars are high, and they have a high ANC, and those large ketones, and they are in DK. And as moms and dads, we're not as afraid of those high blood sugars. And we also have a fear of taking our kids to the ER, because we've learned over the years that we feel like we know more than the residents that are there, right? I mean, I bet you there's 100 people that will listen to this podcast and have a memory of taking their kid to an ER, and the resident starts to load up insulin drip instead of a glucose drip, right? And you're like, Whoa, what are you doing? Right? So we have this, we have this doctor mom and Doctor dad syndrome, where we we think we can take better care of them at home than at the hospital, and then by the time they get to the hospital, it's too late.

Scott Benner 9:40
Yeah? And that makes no it makes a ton of sense. And I think it feeds right into, you know, everything that you've said so far, plus everything that I see, usually, hold on. I have to tell arm to drink a half of a juice, just texting her, we're good, okay. And so, you know, so I think that what you see here is that, first of all. Yeah, like you said, when you start off, I remember getting, you know, somebody handed me glucagon, and I was like, What's this? They're like, Oh, you know, it's in case they get really low extension, you'll never use it. Don't worry about it. And so then that's the overall feeling, like, Oh, she has type one diabetes. It's horrible. It's going to be with her forever. But even the emergency thing, I don't even have to understand that well, because it's never going to happen. And then you know, as you're acclimating yourself to trying to figure out how the insulin works. The message from medical a lot is better high than low. And then you're and then that the you're sort of the human part of you takes over, right? Well, they said 150 to 200 was okay, but it's only 210 so that's fine, right? And then your body, you start to accept it. Well, 250 I mean, that sucks, but it's not terrible. I can get it down. And before you know it, 180 200 is your norm. You live there. And then when you see a 320 suddenly it doesn't seem that horrible anymore, even though your blood sugar is now at 323 times what it should be, and, and, and there's not that panic. You do see it all the time, like people say, Well, I want to get them, I want to get their blood sugar high overnight so I can sleep. I don't even understand that I'm up as much when my daughter's blood sugar is high as when it's low, maybe more honestly, when it's high, because more difficult to deal with. It takes longer to adjust and fix.

Michelle Bauer (Alswager) 11:15
And a lot of a lot of parents aren't actually informed either, though, that you know, in their kids, there's a child can have 150 blood sugar, which, you know, fine. It's an it's in a range. But if they're, if they're sporting any kind of ketones, and they're not getting, like, you can be 150 and say, Oh, if I just don't dose insulin, they'll be fine. Their body constantly needs that insulin. You constantly need to be feeding that system. So you can be in danger at 150 if you have large ketone, yes, if you're not, yeah,

Scott Benner 11:43
it's my daughter's sick right now. She's why she's home from school. She has a head cold. She doesn't have a fever, she doesn't have the flu, just has a head cold. And for the last two days, her blood sugar has been difficult. It sticks at 200 I have to give her enough insulin to knock a horse over to get it to move down overnight. At three o'clock. She's growing on top of it, so overnight, I get three o'clock in the morning the night before, it just it tried so hard to go up, and I, I felt like I was, I was putting insulin with a funnel instead of with a cannula, you know. And and then last night, I just didn't wake up, I think, beeped and beeped and beeped. And at 6am I opened my eyes, the first thing I heard was it beeping, and I thought, and I looked at the graph, and sure enough, at three o'clock, she went from like 120 like straight up. And I went in. I tested her. She was 310 she had been 310 for three hours. You know, for the most part, I Bolus so much insulin. I mean, just two and three times what moving her 200 points should take. And I still had to Bolus again and again. And by the time she was down to 80, it took me, I'm gonna say, the better part of four hours, and I gave her, you know, so much more insulin than I would have in a normal situation, because very likely, and I didn't test her, but very likely, she had ketones, plus it's more difficult to affect the high blood sugar. You know, once your blood sugar is high, it takes more insulin, normally, those sorts of things. And then I think that's how people get caught in the loop. They see a 250 and they go, Oh well, you know, it should be this much insulin, and then they end up using half as much as it takes. And then two hours later they go, Oh my God, it's still 220 and they try it again and again. Before you know it, it's time to eat, and then it just, you get caught in this horrible cycle. It is very hard on your body, and so you know, and it's, it's not going to kill you this second, but it doesn't mean it doesn't have a hard effect on you. And I think that's hard for people to hear that they're that they're they or a child, has a disease that has two sides of a spectrum, and both sides of it are equally dangerous, just the timing of the most dangerous, like, do you want to, do you want to have something horrible happen to you right now? Do you want to have something horrible happen to you 10 years from now? Do you want to have something horrible happen to you three months from now? And what, I think what happens is that becomes so overwhelming for some people that they just panic and pick a side and they give up in some way. And I'm always trying to tell people that it's not as crazy as it sounds if you're struggling with it. It is much simpler to keep a blood sugar more around 100 than it is to keep it higher and and then it just takes practice and a little bit of knowledge. And a lot of times that is knowledge you don't get at the doctor, which is why community ends up being so important sometimes. But you know, that's why I asked you on I just, I just wanted people to hear from somebody who had lived through it and was still talking about it, that, you know that. So, I mean, I guess Can we go backwards a little bit, and I don't know how much of this you talk about, but do you know the the steps that happened, that that led to Jesse's demise? So

Michelle Bauer (Alswager) 14:48
it's interesting. It's interesting. So I'll give you my perspective on this. So ever since that happened, and every time there's a death in the D O, C deputies online community, you know. There's different sides that happen. There's times where I feel it's really awesome, like I'm so happy people talk about this now, because even if we save one life, it's like one parent decides to get up an extra time in the night, or one parent knows the warning signs, like, as long as we're talking about I think it's really good. Then there's this other side, where I like to protect the parent from seeing things. Let me give you an example. I'll go back to your actual question. So there was a recent death. The young lady's name was Alex, and it blew up all over Facebook, and it's so well intentioned, and the people who are posting it? Mean, well, right? Yes, but what I saw and made me sad, and a lot of the parents in the community that nobody wants to belong to, right? This lost community, we respect the parents privacy. So what happens is, someone posts that photo like I would rather see it. Say there was another loss in the community, you know, prayers, sadness, all of that, that's fine, but what happens is the threads blow up, and what you see is, well, what happened? What was the parent doing? And then you see hateful things, like, clearly the mom didn't know what she was doing. Or, how did that girl not know for 48 hours she was in D, K, a, such that that could have been prevented, that what I see in that is there is a mom out there who's suffering. She's going to suffer for the rest of her life. She lost the child. And these people are gossiping. It just comes off as gossip, because those those parents, as much as they want to know what happens, got you already know the answer. We know people die from extreme highs and extreme lows, and all you have to do is keep doing what you're doing, getting up in the night, checking what happened to Jesse is what I will tell you everybody is, I don't go through the steps of what happened that day, because when I'm asked to do that, you're actually asking me to relive my worst nightmare, Right? So there's, there's a, I call it the slideshow in my head. So I have to shut off the slideshow because I can't relive that memory. So what I do is I tell you simply this, you're already doing what you should be doing. It's highs and lows. The coroner actually told us he's basal and he labeled it as D, K, a, and I can second guess it. I could read the coroner's report. Nothing is going to bring him back, and nothing is going to save you know, Aiden, or anybody, right? And it you just have to keep, just keep trudging. And another thing I tell people a lot is you can spend so much time focused on the diabetes and asking me questions about exactly what happens, and you miss that your child, you know, gets hit by a bus walking across the street, or riding his bike, or riding an ATV, or, you know, he gets cancer. So, so that's kind of how I always handle that question, is, there's no there's no pinpoint, there's nothing that's going to save your child by learning exactly what happened. I mean, in all the families that I've encountered, the 100 families that have found me and found our private Facebook page where they can grieve and dream or share good details or Happy Days, is the college age kids. There is something there to be said that when you're sending your kids off to college, the biggest thing I see is death due to DKA. They go out drinking with their buddies, or they simply just don't tell their roommates they even have diabetes. Or how to give them a glucagon, or how to if I'm acting weird, you know, give me, give me a juice box. This is what these are the steps you need to take. What happens is maybe they went out drinking and they're acting a little weird, and people just put them to bed thinking that they're just drunk, right? And then they don't wake up. There is a very big preventive measure you can take in that situation. Well,

Scott Benner 18:56
I would say that, and I asked you that question, hoping you would answer it the way you did, and more, just to kind of spur on this part of the conversation, I guess. So when you see people in the community or online or wherever it ends up being, and they start wanting to mine out the information. How did this happen? What are the steps? I always think they just want to know what happened, because they are just hoping that the story is opposite of what they do. You know what I mean? Like, like, they just want to hear that someone did something wrong, or someone did something, you know, in their eyes, it's not correct or different than they do, so that they can sit back comfortably and say, oh, okay, good. I'm not doing it the way they did it, so my kids gonna be okay and and it's just, it's just to me. It's let me know how to put it really. It's just a wild like flailing into the world, like, you know, just, please let this not be my story. And I need to hear, I need to hear your story so I hear so I find out it's not mine. And, and in the end, that they don't see how horrible it comes off. Is, is fascinating. And I'm not saying you don't have those thoughts. I mean, you you spoke about the the little girl, or the the girl who who passed recently. And I try very hard not to pay attention to just any of that. I don't think it's any of my business. I don't pay attention. And I heard one person say that, you know, the kid had it was in decay for, you know, days. And it did pop into my head like, God, didn't they test? Didn't they know, but at the same time that my next thought is is very simply this, and I mean this completely, completely honestly, it's a really terrible disease to live with. The factors that affect you come from so many different directions and so fast, and everyone's understanding of it is different to blame anyone for anything that happens with type one diabetes and the use of man made insulin and not having a pancreas that works is just flatly not. It's not human You can't blame somebody for that. It's no different than blaming somebody for, you know, being in a car accident, or, you know, falling off of a bridge, or, I don't know what the hell like anything. You don't even there's some things in the world that just happened to you. You can't be blamed for them. And it's it's wrong to try. I think so

Michelle Bauer (Alswager) 21:09
well. And the reality is this, there is not a parent out there who's lost a child isn't already dealing with blame on their own, right. So there's, there's so much Coulda, Woulda, Shoulda, no matter how it happened, where it happened, when it happened, if I spent all my time blaming myself or my ex husband, I wouldn't live day to day. And like, people don't understand sometimes that for the first few years and sometimes, I mean, I have people that I've been part of this group for seven years, we've kind of gone through this together. They never kind of escaped the constant pain and suffering of it, they just That's That's where their grief took them. It's interesting because we're talking about this because someone shared an article with me today about grief and loss of a child, and like, seven things I've learned from from loss of my child. So well written and it's and like, step number seven just really resonated with me is that because of the deepest pain that we have felt, we really experienced joy more than the average person. And I don't know if you can completely understand that, but like, because we know the bottom of bottom, like when we see joy, it's such a strong emotion. And the same with grief, like any kind of loss we feel now, like, say, someone goes through a breakup, I call it. How do I explain it? It's like, it's like, you already have a sunburn, and then the sun shining and burning it worse, right? So everything you feel painful is twice as painful, and everything like joy, really stands out. And I say that because, like some people can see me on the diabetes online community, I write a lot for beyond type one. I, you know, I've written for D life, and I share my joy a lot. And I, you know, I am living a great life. I tomorrow, I leave for Rutger Ridge, Colorado, and I get to ski with, you know, 25 type one key coaches and help train them and and then run a camp on Saturday up there for kids with type one diabetes. I'm living a really good life, and I've decided when I say things like, people ask me, how are you? And I can say I've never been happier. It used to really pain me to say that, because I would always think, what is that person thinking in the back of their mind? By God, she lost her child. How can she say she's happy well, because I have to move forward. I have to continue living. I can't live in doom and gloom every minute. But don't for one second think that a parent who's lost a child isn't feeling this underlying, constant hole in their life. They're just they're just learning to live with just like, much like you learn to live with, you know your child's diagnosed diagnosis, right? Well,

Scott Benner 23:43
I was gonna say yeah. I was totally Yeah. I was just totally gonna say I it's, I mean, I'm prefacing it needlessly, because I don't feel like you need me to, but it obviously, it obviously doesn't compare. But at the same time, I know what you mean about the joy thing. Like, I always tell people like, now that my daughter lives with this chronic illness that does envelop a lot of our time. It does loom over top of your head. Is she okay now? Will she be okay later? How is this gonna affect all these things that when something good happens, you really do feel it very purely, and at the same time, when something that you used to think of as being bad happens, you can laugh it off almost sometimes, like, sometimes I'm just like, That's not important. Is that person upset about that? You know? Like, they totally should get up with me tonight at 230 and watch Arden try to eat a banana in her sleep. Like, like, I think that would definitely change their mind about what bad means. But at the same time, I heard what you were saying. I guess that when you see something bad that it brings all of your emotions to the top more, because I can't imagine how strong you are to be able to get to the point where you can say, This is the happiest I've ever been. Because being someone who has not nearly gone through what you've gone through, I'm having a hard time imagining being able to get past the idea that I'm allowed to be happy. Me after and and that I should be or that I'm not hurting something, and that you figured that out, that path that's magnificent. I'm so glad you're sharing it with other people, because it's not something anyone can imagine, obviously, unless, unless it's happening,

Michelle Bauer (Alswager) 25:14
the only way you can, the only way you get there is with support.

Scott Benner 25:18
If you take insulin or so final ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G VO, kypo pen. My daughter carries G VO, khypo Pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that, I trust low blood sugar. Emergencies can happen unexpectedly and they demand quick action. Luckily, jivo kypo pen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use GVO kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulin OMA, visit gevok, glucagon.com/risk, for safety information.

Michelle Bauer (Alswager) 26:30
And you know, I was just very fortunate that the people I chose to surround myself with, you know, I have to tell you, like, there's this very weird thing that happens at boss, you and I have written about it, but when you when I lost my son, I also, I was very involved in the diabetes world, you know, I'd done a documentary I had, you know, given to, you know, done every JDRF ride every year, all over the country and and all sudden, like, who's going to want to Be around the person who lost their kid to diabetes. If your kid, you know, if you as the parent who have a healthy type one living at home, you're going to want to spend any time with the mom who lost a child. I really panicked I was going to lose this entire community, and I was very blessed and fortunate that my my people rallied around me and, you know, and it's, you know, I talked about, you know, I'm very blunt. I talk about, you know, the loss of Jesse and and moving forward and what I continue to do for the community. But I just, I guess, I just feel very lucky that I was, you know, allowed to stay here. Of course, I use my time wisely in that, you know, when I'm in a riding on insulin case number camp, and I'm standing talking to a 10 year old kid, you know, and he says, How old was your son when he was diagnosed? I just say three. And yeah, he asked questions I would never talk to, you know, those kids, sure, you know, and tell them, I lost my son because it's not inappropriate. He

Scott Benner 27:59
was about your age when he passed. Yeah, there's, there's, there's, there's no value in that. No value. Yeah, exactly, and, but it is really cool that that people did that because I, I tried to imagine, do people struggle with how to speak to you when they know? I imagine they would, right,

Michelle Bauer (Alswager) 28:16
sure. Um, I mean, the worst is when someone doesn't know. I mean, now it's been seven years, so it hasn't been as bad, because most of the people I know know, but you know, in the in the early first couple years, it's just so horrible is, you know, you run into an old neighbor and they're like, gosh, how's Jesse? And you're like, Well, you know, and you what's hard for those families, and myself included, is if forces you, they're grieving for the first time, and you're forced to re grieve something. You've you've gotten your you're at Step 29 and they're at step one. And you know, so you see their pain and you see their grief, right? So, you know, I, I don't even reach out, like if, if a family is lost, I don't reach out to them. I kind of wait for them to find me, let them come to me when they're ready. And some are never ready. Some just decide, you know, it's just not their thing to grieve with. Others, they just, they just don't find a need for it. But it's a solid group that helps each other, and I'm really proud that a lot have gotten involved. And, I mean, I don't know if you know, but like, beyond type one is really involved in the whole DKA movement to get information to every pediatrician in the US. Yeah, warning signs. And while that's not going to save a Jesse, it is going to save kids, and it's going to save lives. And I'm like, I'm just so proud of the people beyond type one that they took a sensitive topic that I know that they've been contacted by others in the online community who are saying, you're scaring people with this topic. And, you know, I think that their opinion, and I can't. Really speak for them, but just from conversations I've had with them, is they're like me. They don't care if it saves one kid. It's worth talking about.

Scott Benner 30:08
Yeah, I interviewed Mary recently, and we were talking about all these different ideas and and I can't see, I can't agree with that more, and at the same time, like you're scaring people, the idea that you're scaring people by bringing that up, I that that starts to scramble my head, because here's what I'm scared by. I'm scared by all the people I see online who say things like, hey, my kids blood sugar has been 300 for three hours. Should I correct again or I don't, you know? Do you think it needs more insulin? Like, and I'm not scared because they don't know. I'm scared because someone hasn't explained it to them, because their doctor didn't tell them, because they got some sort of info. Some sort of information that led them to that thought and and you can, you can shine a light on things like DKA, you know, awareness, and try to pretend that that's scary, but that's not the scary thing that's going on in your community. What's going on in your community, I think, simply put, is that most people don't understand fundamentally how insulin works and how to use it. I really think that's the most scary thing, because at some point then, and I know most scary is not English, I'm pretty sure, but, but most, very scariest is what I'm saying is, is that, is that none of us really get taught how to use insulin and how it works. And then, you know, I,

Michelle Bauer (Alswager) 31:23
I have a, I have a really interesting story like, just to share quickly on that is so one of our elite coaches, I'll use her name, because she won't care, Lauren, Lauren and I have gotten very close over the last few years, because she also did the Ironman Wisconsin with our group this last year and doing it again. So we've gotten to be friends. And she's She stayed at my home, and she was over in Austria. She lives over there quite a bit of the year because she trains with the ski team over there. And I follow her on her Dexcom share. There's a few people that I follow just because they look at me as someone that's kind of an outsider, not a parent. You know, I'm not going to chastise them, but I'm kind of a safety net for Lauren when she travels. That's cool. And so she's seven hours ahead of me, and she is having roller coaster blood sugars. And I'm talking up to high, down to low, up to high, down to low. And I mean h, i and l, O, W, and so we're in constant contact, and she's just staying in a place with a 20 year old kid who has no understanding of type one diabetes. She ends up having to administer her own glucagon. So I just kept her on the phone for a couple hours, and we just hung out while I worked, and I kept her safe and just watching her graph and trying to help her, I just finally said, You know what, Lauren, I know you're not going to want to hear this. You're scaring me. Your numbers are scaring me. The fact that you have large ketones are scaring me. You need to be in a hospital. And she said that I'm in Austria. I'm afraid of the language barrier. I'm afraid they're not going to know what to do. And I said, You need to be where the right equipment is and get the help. And I think if Lauren didn't know me and didn't know Jesse's story, I don't know that she would have gone to the hospital, but she went and she she was very grateful. She said, Thank you for pushing me. I was in severe I was severely dehydrated, and I was definitely in DKA. Now, had she gone, kept going at home, I don't know what would have happened to Lauren. And so I, when I when I hear that, you know that lets me sleep at night, that I helped Lauren, that I know that Lauren went to a hospital simply because she knew Jesse's story. And I'm sure there's other parents all over the world that I don't even know, know of Jesse's story, and probably had a similar situation. And you

Scott Benner 33:44
and I have never spoken before this, and we don't, we don't know each other, and yet you come into my mind frequently, yeah, yeah, and so, and it's always wrapped around this issue, and I don't want to, it's funny, we always talk about this community online, but and I wonder if people realize when they're in it, I'm kind of going backwards, but when they're in it, that they're not that they're likely not going to be in it forever. And so as a person who has had a blog for 10 years, and I'm sure that you have a similar idea, the names and the avatars, they come and they go, and they come and they go, and people get in there, and they either get the information they need, or they stay till they're comfortable, or whatever it ends up being. But in the moment that they're there, they believe that this is the world, that it's always been like this, and it'll always be like this, and they've just added themselves to it. And what I know as an outsider looking from, you know, a back a little bit that in six months, they'll stop coming around, they'll understand insulin, they'll not be scared anymore. They'll get the answers they need, the comfort they need, whatever it ends up being, and they'll go back to living their lives. I always feel good when I see people disappear. You know, when I see them leave, I always imagine that they just have everything they need and they just want. Go back to their life and and at the same time, when you see somebody who is just so fervently, just arguing or trying to make points, or what did this person do? Like that whole thing, I think they're missing the point of it. The there's this there's this comfort there. There are some people who have been there for so long, they could come really help, like you did with Lauren and and I just wonder if sometimes it's not lost on them that they're not the driving force of what's happening, that the the entity is the driving force of it. I don't know if that makes any sense, or even why I got off on that tangent, to be perfectly honest with you, but it just always, it always strikes me when someone's raining or raving or or coming out, like they're just like, I know what to do. And I'm like, Yeah, I feel like you've been here for three weeks. But go ahead, tell everyone what to do, and you know, and then and then, and they get going, and then and then, I always look at the threads and I think, oh my gosh, this person asked a simple question. There is a simple answer to it. You can agree or disagree that I know what that answer is. And then six people come in and say six different things. And I always try to picture the person either and going, I asked a question, six people answered six different ways. I don't know what to do now. Like, who do I randomly pick? Do I just take the person whose avatar looks the most pleasing to Me and decide to believe them? Like, how does it end up working? But to know that there's someone like you who you can trust. What's coming from them is huge. And I think that those are as are the community, even though the people who are maybe the loudest in it or the most active, maybe they may never know that, you know, but, but so it's a it's a really huge thing you're doing, and I think I'm thanking you in a very long, convoluted

Michelle Bauer (Alswager) 36:45
the do see, you know, the whole online community, it's such a resource. And the same breath, when I meet a newly diagnosed family, I say, just be so careful on the do see, because there are the shamers. The shamers being the ones that say, Oh, my child's never been above 170 I'm calling the F on that, okay, because we've all been there. And, you know, you're not magic, you're not a unicorn. You know, there's the shamers and those people that know everything, or, you know, they're there. I think some of the D, O, C has gotten a little bit, dare I say, out of control again. I'm probably gonna get my throat cut to that. But there are some, I mean, I've been blocked from a major one that I never have once made a comment on. Never once they

Scott Benner 37:33
just decided you were out, huh?

Michelle Bauer (Alswager) 37:34
I got I got shun based on somebody else I knew. And I'm like, Why did I get shown from that, but turns out, I don't really care. But you know what I mean? It's just, it's like, it's a drama filled, you know, do see situation, and I don't need to be there, but, like, I warn people, it's like, just be careful the information you're seeking and where you're seeking. It wasn't,

Scott Benner 37:53
I'll be, I'll be completely honest. If you asked me, my honest answer would be, there's good information, there's bad information, and there are crazy people. You have to figure out what those three things are, yeah, yeah. And so it just, it, just, I maybe can stay out of it a little more. I know this is going to sound completely backwards, like I'm in 1982 or that I, you know, voted for Donald Trump or something, but, but I think because I'm a guy, I don't get it as hard, you know, I think there's something to that. I think that I'm not one of the moms that it just doesn't it doesn't hit me as hard, but I still get it. You know, for every this will sound like humble bragging, but you know, for every 10 emails that are like, Hey, I listened to your podcast and my kids a 1c is down two points. Thank you very much. I didn't understand how to do this, or I never thought about this before. You know, every once in a while, you hear from somebody who's like, you're a pompous jerk, and you think you know everything. And I'm like, I don't think I know anything. I'm trying to tell you what works for me do whatever you want with that, you know, and so, and at the same time, I've had someone yell and rant and rave at me, because I, you know, I let my daughter eat whatever she wants to within a certain degree, we deal with it with instant. So I get hammered for that. And and, and I just have taken a very interesting tactic where I don't care, and so I just really, I pay no mind to it, and I do sometimes. I do sometimes. Thank the fact that a number of years ago, I wrote a parenting book, and I got these reviews, and the reviews were mostly very glowing, and then some of them were not. And then I just realized it was like, someone read this book and loved it, and someone read this book and hated it, I'm not in control of that, you know, like I can't possibly be in control of that. And I think of this the same way, my information is not dangerous. I always preface what I'm going to say. We'll say it right now. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making changes to your medical plan. There, I'm not telling you what to do, and so you do whatever you want. And at the same time, please don't yell at me, because I don't like that, but I am just going to delete it if you always,

Michelle Bauer (Alswager) 39:55
you know, you make an interesting point. And like, you know, like I said, beyond type. One has given me a really good voice. And like I said, I appreciate them, and I did an article about etiquette. When you hear in the D, O, C, that someone has passed away, how do you handle yourself? And like, one of the biggest things I say is don't make this about you. And you know, don't, don't reach out to that parent, because I understand the empathy I understand. Oh my gosh, I too, have a child with type one diabetes. You're living my worst nightmare. Yeah, we know we're living your worst nightmare. You telling me that you still have a child that is breathing isn't helping me. You're helping yourself. You're making yourself feel better. You're not making me feel any better. So just, I just say, Stop yourself. Don't post on their, you know, funeral page, don't, you know, gosh, my child has diabetes, you know? And you know, I

Scott Benner 40:47
can commiserate with this, yeah? Because you can't, yeah. Draw, draw a strong line to your point with this. Almost every wedding toast, or someone who stands up at a funeral, who these people try to speak about the departed, or they try to speak about the people getting married. But if you really listen to what they're saying, they're telling stories about themselves, even when people don't mean to do it, it's hard for them not to relate things back to themselves. It really is a very human trait, you know, like, I boy, I can't say who, but I remember sitting at a wedding, listening, and I was like, Is this person ever gonna mention the bride and groom? Or no, I don't think, I don't think they're going to No, no, this is all about them. They but they thought, they thought, thought they were talking about the bride and groom. It was fascinating. Yeah, you know,

Michelle Bauer (Alswager) 41:38
I really do believe the majority of people, they absolutely mean well. And I know that. And you know, like, I always tell people to it's like, if you don't know what to say, just say, I don't know what to say, if that's okay, that's saying something, yeah, or don't say anything. It's okay. But it's it's amazing to me. Like, in an article about etiquette and explaining, don't, and I write, don't. Don't ask the person what happened. If they want to share, they're going to share. I say that in my article, and I will kid you not in the thread that follows on beyond type one, I was completely attacked by people saying she's not telling us what's happened. She we have a right to know. We have a right. She's hiding something. I'm like, by God, you did not read my article. So my article says, Don't ask me. I'm telling you not to ask me. And you're, you're telling me, I have to tell you, No, I don't, I don't have to tell you. And you know what, there are people who have asked me, and I, of course, tell them, you know, detailed information, and it just, it's, it's a right moment or a wrong moment, and I get to choose when that is and or who it is. Or, you know, it's like simple things tangent wise is like, you know, you're shopping at Target, and someone asked me, you know, because they're looking at the groceries I have on the card or whatever, like, oh, how many kids do you have? I don't get into details because I'm not going to forage a friendship with the cashier, right? I have four kids. I don't need to elaborate. Now, if it's someone I value in my life, I'm going to say I have four children. Unfortunately, my son, Jesse, actually passed away when he was 13, because I know I'm going to have a relationship with that person, and it's worth me telling and going through pain where and actually putting that person through pain, right? Because the target cashier really probably doesn't want to

Scott Benner 43:26
know that, and I wasn't trying to make you feel badly. And now they think they did and they probably didn't. And so here's what we've learned. I think, Michelle, shut up is the is the it's the right thing to do. It's everyone shut up. Don't, don't. You don't have any thoughts you you haven't perfectly crafted your comment to be the exact right comment. You know, you don't have a story that's so close to someone else's that they're going to be happy to hear it, that this person is going through such a multi faceted thing on an emotional level that you'll never understand. Just don't, just don't, you know, like there's nothing you can do, you know, make a donation to a diabetes charity in the kid's name, but then don't go out in the world and tell anybody. Do it for yourself. Don't do it for someone else, or so that someone else knows what a great person you are, or so that you can feel better about it, or feel comfortable it's not about you. Somebody had a horrible tragedy. Leave them alone. Am I close? Is that close? Or have I gone too far? Have you hung up like, you know what? That was too hard line for me.

Michelle Bauer (Alswager) 44:30
I mean, like I said this, you know, this book by, I believe her name is Amanda Miller, I literally just shared it with, I mean, it was so poignant and and just explaining, like, what, what we're feeling, how we're feeling it, and the best thing you can do is just be supportive. You can be supportive and loving without understanding, if that makes sense. No, it does. I don't want you to ever go into your brain and try to imagine what it feels like not to have your child. No one should feel that pain. I don't wish that upon. My worst enemy, because I know what it feels like. I want everyone to stay in their bubble, their happy bubble, really honestly, for as long as they humanly can, because it's a really nice place. You don't really realize how nice it is until you're on the other side of

Scott Benner 45:12
it. And it's not just with the death of a loved one or a child, by the way, too. You will eventually get out of that bubble. Like I remember being a young person in my 20s who was just married. I was like, this is all perfect, until the first time that, like, my hot water heater broke. And I was like, life's not as perfect as I thought it was. And then I fought with my wife one time. I was like, Oh my gosh. How did that happen? And then, you know, like, just your bubble continues to degradate it. It breaks down over time, until, and I hate to sound like, you know, but till the till the actuality of the real world hits you from all sides, like you can only insulate yourself for so long, hold on to this part of it for absolutely as long as you can. Don't let this part go. You can assume that the election might have been rigged by Russians. You can think that your neighbor probably is a bad guy who is dumping bleach in your Bush because he doesn't like the way it's blocking his driveway. That all that stuff is probably happening. It's okay to know that, but try to stay, try to stay blissfully ignorant about this, right? Just it's always going to be great. Everything's going to be great. I love my kids, I love my life, I love everything. And this is always going to be like this, because one day when it's not, yeah, it's going

Michelle Bauer (Alswager) 46:16
to hit you, right? You don't know. And that's always my advice to people. I say, please just go let your type one live their life, because you don't know when anybody's bus is going to hit, so just go live. That's the best advice I can give to anybody, and that's that's why I keep doing what I do at riding on insulin and and watching all these kids and and the adult. I mean, you know, I have, you know, 100 endurance athletes all over the US and Canada, that race, you know, with type one diabetes, and like, I see them living life and mentoring and speaking and, you know, telling people to live their best life. I mean, that's, that's how to live it, yeah.

Scott Benner 46:54
But do you remember the egg crack challenge? Okay, so the boy that that was for who I can't believe but his name is, it's just slipping my mind at the moment, I interviewed his. I interviewed his. Karen Mendo, oh, yes, thank you. I interviewed, I interviewed Miss hover, yeah, year, a year ago, and in the course of that, that conversation, the one thing that stuck with me, it sticks with me every day I might think about her constantly, is that she said that no matter what the outcome with her son was, even though he passed away, she would not have changed anything about how he lived his life. And she just talked about how happy he was and how Grady was doing at college, and he was the captain of his lacrosse team at school, and that he was a happy, fulfilled person, and that she thought if she restricted that because of diabetes and he got an extra day, she just didn't think that that those days would have been valuable, as valuable as him just living his life. And man, I really do think about that all the time, because it is easy. It is very easy to wax poetic about this, like, live your life. The bus might hit you, like all that stuff, and I believe it, but to really do it that's like, that's top level brass balls. Like she's she believes that now today, as much as she did then, and I give her a ton of credit, and I think you fall right in that same category. So I just think it's just a wonderful message for people you really do just need to live for today and be happy not worry about what's gonna happen tomorrow. You kind of can't, you know? Yeah, yeah.

Michelle Bauer (Alswager) 48:27
She's a friend of mine, and she is part of our group. She's found us. She's a she's an amazing lady, so she still has a big, loud voice out there,

Scott Benner 48:36
just to stick to your guns after that, to not one time go, You know what? Okay, maybe I would have changed like to not do that is such a respectful position for her son, you know what I mean like, and for her family and her life and their decisions and all those other things I I'm always there's a couple of people I think about a lot when I look at my daughter, because it is not, it is not a stretch to be going along, living your life just as easy as could be, getting great blood sugars for weeks on end. Hey, my a one sees 5.8 I'm kicking this right in the butt. I should start taking care of other people's kids. I'm so good at this, blah, blah, blah, like really starting to feel it, you know. And you could be going along as well as that. And still, sometimes I walk into my daughter's room at night to, you know, look at her CGM, test her blood sugar, turn off the fan, whatever it is I'm gonna do. And every once in a while, I do look at her and I think, My God, is she gonna make it the whole way? Like, maybe not, right, you know. But I never think that of my son, but he stands on a baseball field with someone throwing a ball 100 miles an hour, and I never think I wonder if that ball hit him in the head and kill him. Like, I never think that, you know, and in the end, both are fairly likely. So isn't it weird how being attached to the disease then suddenly makes you feel like, oh, is this something I need to be focused on more. Michelle, let me tell you a secret. I don't drive this. Hate limit, you know, and it's funny, and it's funny. I never think I'm about to slaughter my whole family. It never occurs to me, you know, never once. And so you can get yourself in the right mindset. And I think you proved earlier by what you were talking about that there is no mindset that you can't become happy with if you if you work at it hard enough and have the right support. Honestly,

Michelle Bauer (Alswager) 50:21
I get asked. I get asked all the time, you know, why do I choose to continue in diabetes? Like, how do I do that? How do I how do I put myself around the disease every day? And I, you know, that's my way of grieving, that's healing and coping. Like, first it was coping, and then it became healing to be around others that I get to still accept that as part of my life, and I don't know any different, like I want to help other kids. I want to make sure another family doesn't go through what I go through. And the piece that and people who've heard me speak have seen this because I use it as a PowerPoint slide. Is about three weeks after Jesse died, I was feeling very, very sorry for myself, and sitting at my dining room table crying, like, what am I going to do with my life? And you know, this is horrifying, and you know, everything, every thought you can think of, and I got my nail and one of his teachers sent me his last writing assignment, and she's like, Oh, I, you know. And it was a very kind of like, oh, by the way, I thought you might want this. And I'm thinking, Oh my god. Thinking, Oh, my God, you have no idea what this piece of paper means to me. And it was a, it was his last essay that he had to type or write up, his handwritten actually, and he could write about any topic he wanted. And the topic was, my mom is courageous. And the entire, the entire thing, just in detail, this is a kid who said, mom stopped talking about diabetes. He would say it all the time, but in writing, he put I am so proud of my mom. She does the JDRF bike ride every year, and if that wasn't enough, she became a director of JDRF, and if that wasn't enough, she decided to do an Iron Man for me, and I got to cross the finish line with her, and she did a documentary, and he just keeps going. And he said, I just am so proud that my mom has always put me and my diabetes first. So for me, it was just like, well, there you go. Jesse has told me what I'm going to do with my life, and that's why I do what I do. It

Scott Benner 52:19
meant so much to him that you were on his side like that, and now you're just on everybody's side. I, you know, I was gonna make a comparison, and now it just seems small, so I'm not going to, but just gonna let it go. But I think that a lot of people who stay in the community and work really hard like this, I think they feel very similarly. I think that it's just you, just you said it before. Like, how do you this is what you know. How do you stop doing it, right? How do you I some days feel like, sometimes you see online, someone who's struggling with something, then you're like, wow, it's such a simple fix. I wish I wasn't running out the door right now. I would just send them a message and say, you know, if you call me right now in 15 minutes, I can explain this to you. You know, like, I don't want you to struggle like this anymore. Like, I don't want your kid to feel like that. I don't. I don't want to live knowing that somewhere you are broken down in your house because you can't figure out this simple thing that I know the answer to. And at the same time, I can't spend my entire life talking to people about things like this, but you found a way to dedicate a ton of your life to it. I'm trying to do it with a podcast. You're doing it with your work and and there are a lot of people doing it in a lot of different ways, and I think that's the core of what the community is, and it's obviously driven by stories like yours, with Jesse's letter and and just tons of other people who have had impactful moments in their lives that have that have drawn them to want to help somebody else. You're everything you said is beautiful here. Thank you. I appreciate you doing this

Michelle Bauer (Alswager) 53:52
well. Thanks for having me

Scott Benner 53:53
on. This is enough. This was a you know, when you have to thank me. Now stop it. So let me, let me, let me. We have to do something pleasant, and I'll beat for a second. Hold on. Would you share your favorite happy memory of Jesse with me?

Michelle Bauer (Alswager) 54:10
Oh my gosh. Favorite happy memory? Well, I don't know if you've ever seen Have you ever seen like a little green Jesse was here. I don't know if you've ever seen it, but I use it a lot in my photos. So summer of 2009 right before he passed, we all, we went on a family camping trip, all the kids, and we were, we were, I don't even know how to explain it. It's Wisconsin, right? So you're up north, kind of hick. I don't know how to play it. So the camping spot had a it was a makeshift shed that they kind of turned into a bar. We're all inside, because it's Wisconsin. You can bring your kids into bars. Yep, I shamelessly just told you that my

Scott Benner 54:52
brother lives in Wisconsin, drinking beer was like the state sport, I think, isn't it? If not for the Packers, it would be like. A legal thing is so I'm sorry. So why not bring your kid to a bar? I live in Wisconsin, I understand.

Michelle Bauer (Alswager) 55:05
Go ahead. So, so we're there, and the walls are this dark green, and the people that own the place give you these gold markers, and you can write all over. So there's writing on every single wall. And so I write on the wall, my daughter writes on the wall. And then, and then there's the at the time, it was 12 year old, Jesse, and he simply writes, Jesse was here on the wall. And why did I take pictures of him writing that? I have no idea, but it was this fun moment. And he wrote, Jesse was here. And so he passes away. And this is kind of a crazy story, because it goes beyond just a favorite memory of Jesse, but that clearly was a favorite. And there's some reason why I took a picture, I you know, and I'm sitting with my brother, and I said, Oh my God, they're gonna, they're gonna paint over that someday, like every year, that's what they do. They just paint over start again and start over. And the new people that come to this campground write their new memories and thoughts. So I said to my brother, I need you to go up there and use part of Memorial Fund to cut that out, and we'll redo it, and we'll whatever it takes, but I need to own that real estate, that piece of the wall, and he goes up there, and it's it's it's foreclosed. Bank foreclosed on it. So it's locked up. I'm not going to say how I got it, but that piece of real estate is in my living room, and it is something that every year on the anniversary of his death, which is February 3. So the number 23 I don't know if you've seen that, but 23 has become his number, and it's used all over the world because of February 3, and people changed their profile picture to that, that Jesse was here, and it's become kind of a movement. And you know, jdrs is even, you know, mile 23 of every JDRF bike ride is a mile of silence in his honor, artists have changed drawings and put 23 in it, and I own actually the 23rd print of something that they did in honor of Jesse. So I guess happiest memory is that I'm so glad that I have that piece of him that he wrote, and that people are inspired by that. But and here's a goofy, funny, funny Damn kid like he, he was very contagious in his his mannerisms and his way of dealing like, you know, you have to walk through like, a really crappy part of this, our city to get to school, like we are sub our subdivision kind of was in kind of a lower income area, and all the kids loved him, like every kid would talk to him, and he'd talk about, you know, if that kid wants to beat me up, I just say, Hey, I bought some Cheetos. Want some Cheetos? You know, he just had this way about him. And, you know, there's still a plaque that hangs at his his middle school about him and inspires others, and I'm just proud of who he was. I wouldn't give up one single day of those 13 years that I had with him.

Scott Benner 58:12
Well, I appreciate you sharing that that's spectacular. And even as I asked the question, I was like, What a dumb question. Why would I say that you answered? And I was like, wow, I've worked out. Okay, oh my gosh. Well, I'm just, you know, we're up on an hour. I don't want to keep you any longer, but I just genuinely appreciate that you came on, and thank you for having me on. No, you're very welcome. Is there anything that you want people to know? I mean, is there a Facebook group, something that you

Michelle Bauer (Alswager) 58:38
know? The thing, I guess, is if people are still listening to what I had to say, would be if, if you if, if you know of a family who who loses to type one, and know them, you know the right thing to do is connect them, you know, like, with a group like mine. Because, man, I would have done anything to have my group when Jesse passed, I I needed to know there were other people who stood in my shoes and understood, don't try to fix them. You know, I see some deal the do see, like, try to manage those people, and we're here for you, and, yeah, you're there for them. But like, don't make it about yourself and just pass them on to this group. Like, it's not even my group. I don't it's not even my group, it's, it's, it's everybody's group that's a parent who's lost and and, you know, connect them with me. I'm happy to you know, on Facebook, it's called families of type one losses. And you know, it's only for the parents. So if I get a request from someone who's just wanting to see what we're talking about, they don't get added. It's definitely a place for the parents to breathe and have privacy and and feel the hurt maybe a little bit, yeah,

Scott Benner 59:47
and people who have a very special set of tools that they can help you with, and they're not, they're not tools you have. So let them get to that families of type one loss, yeah, okay, all right. So. Well, I hope you have a happy holiday. Merry Christmas, and your new year is fantastic. Have a great day. Scott, you too. Bye, bye.

A huge thank you to one of today's sponsors, gevok glucagon, find out more about G, VO hypo pen at gevok glucagon.com, forward slash juice box, you spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juice Juicebox you

breakthrough T 1d who, of course, formerly was the JDRF put out a lovely blog post about the accident. I'd like to read it to you now. It says the leadership staff and volunteers of breakthrough T 1d mourn the tragic sudden loss of 5t 1d champions on Friday, November 1 2024 that night, five people who were pillars of the breakthrough T 1d ride community died in a tragic single car accident. The group included two married couples and one single individual, all very close friends and veteran breakthrough T 1d ride participants. All five people were inside the vehicle at the time, and there were no bicycles involved. Understandably, the tragedy sent shock waves through the tight knit ride community, as well as the entire breakthrough T 1d organization. Chris Eaton a lead volunteer partner for breakthrough T 1d ride, and the ride Advisory Council knew all five people well. Ride is the greatest group of people you wish you didn't need to know. Our friends embodied that feeling of inclusion, hope and a steadfast focus on getting to a cure, said Chris, they will be sorely missed by their families, friends and the ride community. Jeff and Michelle Bauer were highly involved in breakthrough T 1d ride especially Michelle the breakthrough T 1d RIDE program is a family, and Michelle exemplified this, day in and day out, said Anthony garrossi, National Director of ride and endurance, Michelle has been a dedicated T 1d advocate since her son, Jesse, was diagnosed with type one diabetes in 2000 at the age of three, tragically and unexpectedly, Jesse passed away at the age of 13 on February 3, 2010, after Jesse passed away, Michelle continued to advocate, educate and push the envelope in His name in honor of Jesse, the day he died, and generally, all people who have passed away from T 1d mile 23 of each breakthrough T 1d ride is written in silence, whether it was riding 1000s of miles in memory of her late son, Jesse authoring a book to help grieving families, Bringing her husband, Jeff Bauer, into the ride family to join, to joining the ride Advisory Council. Michelle was all in. Anthony added in her spare time. Michelle had a number, excuse me, in her spare time, Michelle had numerous other T, 1d focused projects, including Jesse was here, which encompassed her work with other families around the world who had lost loved ones to T 1d Jeff proposed to Michelle in 2018 at mile 23 of a breakthrough T 1d ride. The couple had a lake house in Wisconsin and spent a lot of time there. They were avid boaters. Jeff and Michelle are survived by their blended family of five children, Alexander Bauer, Claudia Bauer, Samantha al swagger, Joseph alswager and Sarah alswager, all of whom are now adults. Josh and Tammy Stahl became close friends with the Bowers through the RIDE program. They rode together mostly, most recently, in late August, Josh started riding in 2010 for his and Tammy son, Gavin, who is now 17, who lives with type one diabetes. Josh had completed and competed in 13 rides, including Lake Tahoe, lacrosse and Death Valley. I've been fortunate enough to talk to Josh and Tammy at rides over the decades, said Dan Wolf, Executive Director of breakthrough t1 DS Wisconsin chapter, who has long been involved with ride, most recently in La Crosse, excuse me, were where we traded stories of our spirit jerseys, kids. Rides and what makes the RIDE program special? Which are the friends you make along the way? Josh and tam are survived by their son, Gavin Stahl and Blake Stahl Barry Sievers first ride was 10 years ago. He had completed five rides, including Nashville, Loveland, La Crosse, while he had no direct type one diabetes connection, he was always willing to help with a smile. He hosted training rides at his house and even helped transport bikes with his trailer. Barry's infectious smile and boundless energy embodied our team Wisconsin Spirit wrote Joe Brady and Scott Hagan in a statement they issued together. Joe lives with type one diabetes, is a veteran ride Coach Scott and Scott is Barry's best friend who recruited him for his first ride a decade ago. Barry was the senior financial manager of an Institute for Clinical and Translational Research at the University of Wisconsin at Madison. He is survived by his adult son, David, and two school aged daughters, Emma and Addison. Thank you so much for listening. I'll be back soon with another episode of The Juicebox podcast. You.


Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

#1359 Camp Sweeney

Scott Benner

Dr. Fernandez has served as Camp Director for Camp Sweeney since 1991. Listen to the end for a chance to win a FREE spot at Camp Sweeney!

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT


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
Here we are back together again, friends for another episode of The Juicebox podcast.

I don't do these very often, but today's episode is also going to give you the opportunity to win something. I'm going to be speaking today with Dr Fernandez. Now, Ernie has been the camp director at Camp Sweeney since 1991 he's a pediatrician, a diabetes specialist, and I think after you listen to this, you're going to also realize he's quite a lovely person. Ernie is going to give away. He'll explain to you the details as we're talking he's going to give away a slot at Camp Sweeney to one lucky kid, and guess what else us? Med is gonna sponsor this episode, and they're gonna send a second child to camp Sweeney absolutely free. Details on how to enter are at the end of the episode. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com you can get on my mailing list by going to Juicebox podcast.com and scrolling to the bottom. And later, you'll see why that's important. Today's episode of the podcast is sponsored by us Med, and this is usually when I tell you about how we get our diabetes supplies from us Med, and the phone number to call, and the website you can go to, and all that great stuff. But today us, med has said, don't worry about all that. Scott, tell them about that another day. Today, I want you to tell them that we are sending one lucky child to camp. Sweeney, absolutely free. There'll be details at the end of the episode on how you can do that. Thank you so much to us, med, US med.com/juicebox,

Dr. Ernie Fernandez 2:06
thanks Scott for having me on board. My name is Dr Ernie Fernandez. I'm an assistant professor in pediatrics division of Endocrinology at UT Southwestern I'm also a private pediatrician in the Dallas area. Drives me the most in life when people know me well, know me as my passion and the honor of serving as the camp director of Camp Sweeney the last 41 years.

Scott Benner 2:23
Ernie, 41 years you've been the director of the camp. 41 years, it's

Dr. Ernie Fernandez 2:27
been an incredible, wonderful experience. You know, this is the 76th year of Camp Sweeney, and for me to be been part of it for these 41 years has been extraordinary. That's

Scott Benner 2:38
awesome. So camp Sweeney has been is it in one location, or is it throughout the country? How does it work?

Dr. Ernie Fernandez 2:43
It's in North Texas. We've served over 35,000 kids over these years, and what we do is we operate three, three week sessions in the summertime. Kids come from about 35 states and four countries in 2024 and sometimes we'll have even more countries, depending on the year. Has a pretty good reach around the world. No

Scott Benner 3:02
kidding. I'm assuming the camp owns property. How much property is it on? Just

Dr. Ernie Fernandez 3:06
under 500 acres. About 470 acres,

Scott Benner 3:10
just under 500 acres. That sounds like a lot of acres to me. Wait, I guess I gotta figure out what the camp is, so let's jump into it, and then we'll pick around a little bit. So I'm there for a week. So

Dr. Ernie Fernandez 3:21
you're there for three weeks. There are three, three week sessions, and it's like any other summer camp. As far as the experiences, the summer experiences, you know, in the daytime, the kids get to pick from 34 different activities. We have a big lake with slides, trampolines, jet skiing, fishing, you know, we have all the soccer fields, lacrosse fields, football, baseball, Paintball is very popular, volleyball, cross country, hiking rivalry. We even own our own FCC radio station called kpsc, and it broadcasts on the whole North Texas area here. And the kids learn how to broadcast. They'd have a video production studio, a podcast studio. They do crafts, you know, they do CrossFit, weight lifting, all those normal camp things. Then at night is just like a regular camp. We have big camp fires with a live bands that come out. We take everybody to a nearby city in Dallas to do what. We rent out, water parks. We ran out trampoline parks. We have dances, we do we hike and do overnight camp outs. We do all those normal types of camp activities.

Scott Benner 4:20
Are the kids split up by ages? Or what's the age range?

Dr. Ernie Fernandez 4:23
So the kids are five to 19, and they're all there at one time. There's about close to 300 of them at a time. It's the largest program for kids with type one diabetes in the country. They're they're all together for really a specific purpose of how the program actually works through it, through its inspiration and mentoring cycles and what kind of sets camp Sweeney apart. And I'd love to share a little bit about how camp Sweeney has kind of grown a little bit over the years, please. You know, in the 1980s you probably, if you think way back to your early days, the DC CT, which was the big diabetes, you know, complication control trials, where. Being released, and they were ending, and the results were coming out, and it started to become incredible. And for people like myself, who was taking care of kids with diabetes, that just by implementing the different regimen plans that were coming out in those days, you could have profound effects on kids lives, not you know, their quality and their longevity of life. And it was really exciting for me and my colleagues to see that, that that was something that that we could seize on. Because, you know, prior to that time, when you were treating patients with type one diabetes, it was a little bit tough, because we didn't have the tools or the technologies, nor did we have the data that we could really, you know, change outcomes. And so we were looking at, I was, look, we're looking at Camp swinging, and we're saying, Gosh, canceling such a great kids come from all kids come from all over. How can we use this program to affect kids lives, not just when they're, you know, six or 16, but when they're 36 or 46 right? And that is what I have spent my whole life trying to do, and would love to share a little bit of that with you and your audience. You

Scott Benner 5:59
know, I'm interested. How long have you been an endocrinologist? Well,

Dr. Ernie Fernandez 6:02
since the early, late 80s, early 90s. I started at Children's at UT Southwestern in 91 but I had been there before, prior to that, in training.

Scott Benner 6:12
What drew you to being an endocrinologist?

Dr. Ernie Fernandez 6:15
I was a pediatrician, and when I took over camp Sweeney, you know, it drew me to take care of kids with diabetes and and it's what I've been doing all my life since, wow,

Scott Benner 6:26
do you have diabetes in your family? I mean, there's just the connection that you built once you've met the people. It was

Dr. Ernie Fernandez 6:33
just the incredible children that inspire me every day, and the things that we do with them, the things that we're able to help them with,

Scott Benner 6:40
that's beautiful. Well, for people who don't know about camp, I'm looking at the website while you're talking and there's so much happening. Just on the front page of the website. It's freaking me. There's a lake there. There's the I've seen kids on Jet Skis. I'm seeing kids climb. It just looks so kind of awesome, actually. Can I ask about how you manage diabetes for the kids, absolutely. And,

Dr. Ernie Fernandez 7:01
you know, that's what I love to share with because, you know, when we started looking at how you change long term effects, we came up with what's called our four pillars. And the first pillar is called normalcy. You know, when someone's diagnosed with type one diabetes and they're just like any other child, they're just regular kids, and they're going through life, and one day they feel bad, and they go to the doctor, and suddenly are diagnosed with this condition, and things change. You know, suddenly, you know they want to be have blood sugars and CGM and, you know, different types of regimens and pumps, and suddenly, the child and family get transformed into this world in which they're focusing on many things and thinking about going to a camp out, or going to their friend's house for a sleepover, playing soccer, then become a little bit of a challenge, and everybody is constantly a little bit outside the circle. Long ago, we realized the first pillar of Camp Sweeney was creating a place where they felt normal. And so we have a large staff. We have about 160 staff members that that work at Camp Sweeney and of them, 70 are amazing counselors, which I'd love to share with you in a minute. But 20 of them are our medical staff, and they are from medical schools around the country. We recruit all over the US and also here, from UT Southwestern their medical students, residents and our attending physicians. We want to create an environment where their diabetes disappears, so we have a year long program where our medical directors actually kind of scour through all of the data in an amazing way. They aggregate everything from the summer before, whether their kids are on OmniPods or they're on mobys or they're on Riley links, or they're on empty eyes, and they're able to aggregate all the data for every age and every gender of every day they're at swinging. And they run them through this algorithm. And I'm not kidding. This is something that these medical directors are incredible, Dr Edward Carey and Dr Sumter, and they go through that, and they come out with a protocol for each day, for each part of each day, for each type of regimen to maximize the control while they're there. And so imagine this, this facility. We have this beautiful facility up on the hill. It's called our medical center, our Ryan Medical Center, and in there there's this huge control room. It's like NASA, it's all glassed in. And all these medical professionals stay in here. The kids never see this. This is all behind the scenes. And they sit in front of all these computer monitors that are on the walls and on the screens, and they sit there all day and they're seeing all the data come in from where the kids are at paintball. They're low, they're going, you know, in the cabins, wherever they are. And they apply these protocols that have been developed throughout the year to maximize their yield, whether it's changing their sensitivity factor, changing their ICRS, whatever it is, it's been recalculated based on the data that was that's been aggregated each year. And the results of that is amazing. The time and range for most of these kids, and in fact, in 2024 was about 86% when if you look at the nationals, just average of an adolescent in the country, you know the time and range is under 50% and so. A lot of this comes from all of this passion of these people doing this work behind the scenes. But the net result is that while the kids are there, they don't know any of this is happening. They're just having kids having a great time. Everybody changes pods same time. So we all, you know, changes CGM, and it's just in the background. None of that affects how they play paintball, how they're all doing lacrosse, whether they're playing baseball, whether they're right, you know, doing whatever they're doing. And so for 18 wonderful days, their diabetes disappears. And I can't tell you how many kids tell me that, oh, in the last three or four days, oh gosh, in three days, my diabetes comes back. But for those beautiful 18 days, it disappears. And that's the first of the four pillars that makes Sweeney a little bit unique in the way that that is harnessed,

Scott Benner 10:45
right? Do you allow parents to follow CGM while they're there?

Dr. Ernie Fernandez 10:48
We don't, for a number of reasons. One, it is a vacation for the parents. And second, we have a very complex technological system there. We actually own 300 brand new iPhones. We just bought another set of iPhone 14 this year, and every child is transferred to one of our iPhones when they arrive. And we have this whole algorithm how we do that, so that their CGM go over, everything comes over. It's we've taken us forever to master this, and then it's all in our systems, and it's all being monitored all the time. And as I said, it's a large medical staff. And the medical staff we even have, obviously, a night staff that checks the kids at midnight, 12345, in the morning, going through all those cabins, making sure all that data is working, that nothing is out of charge. The Kitchener, you have to charge all these millions of devices, making sure that everything is staying in sync, that we're that we're able to make those adjustments so they're always being monitored 24 hours a day. The kids just don't realize it, because the entire medical center is up in this, in this big, giant building that the kids don't actually awesome. They

Scott Benner 11:49
almost made me cry, Ernie, can I call you? Ernie? Is that okay? Absolutely. Yeah. I swear to God, I was crying a second ago. I just like, just thinking about people looking after other people and and the kids getting a break and everything. You know, if you give me

Dr. Ernie Fernandez 12:02
a moment, I'd love to share these other pillars, because I can do them fairly quickly, and they tell you how it all comes together. Yeah, please. You know, the second pillar that we discovered many years ago is so kids get diagnosed and they feel different, and now they feel normal, but then they have to overcome their anxieties. And you know, all children have anxieties. We all do. Every one of us, every human, has anxieties, but kids with type one have amplified ones in many different areas, socially, in so many different ways. And so trying to get kids to overcome those is the key to success long term with these kids. And so what we do is we have a system that we developed way back in the early 90s in which we take these 70 amazing counselors that we hire, mainly from the Midwest. They're brilliant individuals. And I won't there could be a whole nother podcast. How we find these people. They're all incredibly brilliant. They all have GPAs above 3.8 3.85 is the average GPA of our staff member. The mass majority come from Notre Dame because we have an arrangement with them. And they come in and they're developed intensely for three weeks before the first child even arrives, because they have to be able to deal with this, what we call zoning model, this confidence model that we have, that we've developed over all these years, and it's how we get kids to have insight into their anxieties and how to get empowered to overcome them. Because kids have a lot of challenges. Some kids have Asperger's. Some kids have, you know, have developmental delays because they may have Down syndrome. Perhaps, maybe they have situations where they're oppositional defiant, perhaps, maybe they have issues where they've been bullied, where they've had tremendous where they've been victims, where they've been excluded. And what happens? Some have OCD, and we have the system that we have, where we allow our staff members to create situations where these kids can quickly identify their anxieties, and then they have plans for each one in a very safe environment for them to shine, to sparkle above whatever is holding them back, whether it's a public speaking, whether it's climbing up something they've never tried to do for something athletic, something, whatever it is, we have a plan. In fact, every morning, we get up super early, like it's six in the morning, and we go through every patient's chart, and we look to see where they are on these anxiety scales and where they are on these confidence scales. And every day, we put together a new plan to see how we can push that child to have that chance to really sparkle for that day. And it's an amazing thing, and it's an important part of how these pillars come together. The third pillar is something that we take for granted. We live in a very venial world. I call it the Tick Tock world, where the things that are valued tend to be incredibly venial. If you're great at at being a bully, you're valued. You see it in the media. If you're great at tearing other people down, if you take risks in your life. You're a substance abuser. If you're somebody that's worried about how they're dressed more than they are about including other people. People tend to value those things. And so kids are always in a free fall of trying to figure out what's real. And so for 18 wonderful days, we inspire these kids to value things that are real, things about. About them. And every day, these kids get so good at even the five year olds get good at this. They get in these groups, and they identify some virtue that they've seen in their little brother group or their little sister group, where they meet every afternoon. And it can be kindness, caring, helping the environment, including someone doing something to make someone else's life better. And they earn these little virtue beads that are colored based on the type of virtue, and they wear them on their wrists. But the thing is, each one of those virtues is identified by somebody in their peer group, and then the person starts to recognize that in themselves, that they really possess these things, and it makes them incredibly empowered to know that they can do stuff other than just the way they use their jargon or their language or whatever the world wants them to do. And finally, the most important part of swni is service. You know, when you have a chronic illness like type one, it's all about ourselves. We're always worried about, okay, am I going to make it through soccer practice without going low? Am I going to have trouble getting through that math test with God being high and getting blurred vision? It's always taking care of ourselves. And we all live in a world where I myself when I'm hungry, you know, I think, oh, I need to go eat, or I'm thirsty, I need to go drink. We always think about ourselves. And the problem is that we live in a world with others. And a lot of people think, Oh, these are my friends, or these are my people that are in my fifth grade class, or this is my soccer team. They're my friends, but they're really acquaintances, real relationships. Real friendships come from investment, from sacrificing each other, doing something for somebody else that's a little harmful to yourself, maybe, but better for them. And that's what gets these kids to start to learn how to develop those kind of relationships. And how do you do that? How do you teach a child to do that? How you teach myself? I mean, here I am, I'm a bit older, and you think, Oh, how would I ever learn to do that? Well, you do that through inspiration. You bring these 70 amazing counselors in, and they kill themselves. They work 18 hours a day for 77 consecutive days, no days off. And they do that because they're driven to help these kids. And these are, these are staff members that could be doing anything with their summers. They're very bright. They're sought after by many people, but they choose to do this passion, and the kids see that, and the kids are inspired. So then you create situations within the program. We do this mentorship program for all the kids 14 and older. Adopt everybody that's 13 and younger, and they're one on one, paired to be mentors, and they want to emulate what those concerts are doing. So they start sacrificing things for their junior mints. That's what they're called. The younger kids are called Junior mins. The older kids are mentors, and they sacrifice things for them. It happens all the time, and it's amazing. Sacrifice time. They sacrifice their merit tokens. They sacrifice a lot of things, and it becomes incredible. And they don't just stay together. It's summer. They're together, usually forever. I mean, they continue to keep up with each other throughout the year, right? And that's critical, because you know what happens is, after 19 days, all these kids go home, and they go back to the world they were in, where they were a little different, but they know what it felt like to be normal again. And they go back to all those anxieties and make them make poor choices, but they know how to overcome them. They go back to that world where they're being bullied or they're tempted to use language or bully others, but they remember what they possess that's better than that, that gives them greater satisfaction. And then finally, they've learned how to build the types of relationships that don't just last through elementary school or middle school, but for lifetime, they become better sons, better daughters, better brother, better sisters. And why do we go to all this trouble? Because all of the data shows that when you can grow a person, you can get get these children to do this, not just when they're six or 16 or 26 but when they're older. It has a profound effect on how they do with their type one, and how they do with many things on their lives. And one of the things we do in our data collection is we reach out to kids 10 years out, 15 years out, and we see how they're doing, check that the different objectives we're trying to accomplish. And that's how we're constantly adjusting these pillars to make them more successful. For these kids. I know I said a lot in a short time, but I know we have a very short time in this podcast. I don't want to bore everybody to death, but that's a little bit about how Sweden works. Hold

Scott Benner 19:08
on a second. Let take a second, because I'm gonna, I'm gonna forget a couple of my questions. So I want to go back to pillar two for a second, when you see these professionals come out and spend this time with the kids and help them with their diabetes and the and the social part of it, are you getting reports back from them later, like, how is that impacting their themselves professionally, and how they're dealing with children once they're back in their lives?

Dr. Ernie Fernandez 19:30
The professionals teach the counselors how to look for the signs of the different types of anxieties and how to work. That's what that three weeks of development is about. Okay? Now we get ourselves into situations where kids have what we call pathological DSM, you know, diagnosis where they have severe generalized anxiety or severe depression. Those kids, we have to refer to somebody to come in to talk to them, and we talk to the parents about getting them the kind of help. But most of the generalized anxiety that we treat a cancer. Of art are routine things that need to be met and need to be overcome. You know, hypophobia. How many kids do you know with type one, I know in my practice that are terrified about going low, and their parents are terrified about going low, or they're terrified about being in a social situation, terrified about trying something in a sports wise whether they had diabetes or not, they had those fears, but then they have diabetes amplifies it. How do you get them to overcome those things? And we have a whole system that our professionals teach our staff how you do that, and it's basically a little system that they learn and they become very good at, also

Scott Benner 20:34
the professionals themselves, though. I mean, where this is coming from for me is that I've interviewed a lot of doctors over the years, and one more recently told me that as he was getting into endocrinology, maybe the most valuable thing that he had done was to go work at a diabetes camp. And he said that seeing diabetes in real life happen in front of him just exploded his understanding of what he should be doing for people. And I'm wondering like you bring all these professionals in debate, did they ever report back to you that they leave with more than they came with? Yes,

Dr. Ernie Fernandez 21:05
well, you know, all of our counselors are pre med, so they all become doctors themselves, right? And so I have generations and generations of doctors that tell you that working with these children inspired them to pick the vocation and career that they're going through the people that help us train our staff members don't get to work with the kids directly, because they're they're just working. What's so critical about our program is what's called devotion. Each staff member has a group of children that they're, that they devote themselves to, and so everything goes through them, the way they communicate to the medical staff, the way they communicate to the professionals. And so because you want that one to one relationship to be able to inspire those kids, when you have a lot of people working with one child, it diffuses the effect of the inspiration that they get and the desire to want to do that. And so that's, that's one of the ways that these pillars work, awesome. And so the staff that work with these kids are more profoundly changed than the kids themselves. It's the same thing with the Mentor Program. This is, I always say this to everybody you know, the mentors, the older kids that that are working with the younger kids, are way more transformed than the younger kids are, because once you learn to serve and you get devoted, it transforms your abilities to do that, it makes you a much more powerful person in your life.

Scott Benner 22:24
Yeah, no, it really does sound crazy. I keep trying to picture like, you know, people showing up to do something for someone else. And I take a lot from what you said there, like, you know, when you do something for someone else, it does really, it really does kind of supercharge you in a way that you don't expect, you know, before you do it. And I just was wondering how many of those pre med, you know, medical students end up going back and being changed by because it sounds like you've been changed by it significantly. So I would it's why

Dr. Ernie Fernandez 22:49
I do this. You know, everybody at swni is a paid person except myself. I am the volunteer, because my life would be totally different if I hadn't had this opportunity to serve. And it started early on, when you first start seeing that you can change a path for a child. Let me tell you something. It just drives you to want to figure out how to make it better. You know, we spend year round preparing for these programs. We have meetings. I have meetings every night, this week, and all throughout the year, working on the little tiny details of every part of these pillars, like how the kids trays are put out, you know, where what music is played, what volume is played out, how you matrix the kids so you know exactly which type of child sits next to. Everything is so carefully calculated and planned out. It takes months and months of work to make that happen. And you know, the program doesn't end at the end of the summer. We have what's called PFC life. Our motto is perseverance, faith and courage, and so PS, PFC life operates throughout the year, from August through May. And it's, it's run by some of these ex counselors that that are now finished college. You know, they're, they're, they're actually been accepted to medical schools, but they, they choose to defer medical school for two years to go out there and do this mission of trying to help kids. And they do them in communities all over Texas, all over the United States. Just this week alone, last night, they were down in Austin doing a big laser tag for any kids without not they don't have to go to swni. They just show up. And we have these events for these kids. We're in communities three or four times. Tomorrow night, we're going to be doing a big trivia thing in Anna, Texas. Then Thursday, we'll be back down in Houston doing another big event. This weekend, we'll be down in San Antonio doing event. I know you know, you probably heard in the Chicago we're not allowed to sit cities around the country. We'll be in the north shore of Chicago on December 8 for a PFC life event. And anybody from the Chicago area with type one can show up. We're going to have a video game truck out there. We're going to have all sorts of entertainment for the kids. And then we'll be talking to parents about how swni works and and making that happen. On January 12, we'll be in Washington, DC. We'll have another big event. You know, there, you know, we're in different states every single month. We're in different cities. Every single week, three to four times a week. And these are all free events for kids that have never even had to go to swni. Never want to go to swni. They just have to have type one. And they spend some time together. And maybe they're inspired by some of our staff to do some of our pillars, and maybe to be inspired to come down to Texas and come down to camp Sweeney. That's part of all of this. I mean, we're not there necessarily to recruit them to come to Sweeney. It'd be great if they did, but we're there really to kind of help normalize these situations and be there for for kids in different parts of the of the country and of Texas.

Scott Benner 25:34
Do you think that families of like both faith and non faith would find because you've used the words faith and devotion a couple of times, and even though I don't believe that you've said it out right? Like, these are fairly like religious terms, right? So like, is it a religious base camp, or is it not? It is

Dr. Ernie Fernandez 25:50
non denominational program? People say, What about the virtue component? Well, the virtue component is just the character traits that we all possess. No matter if we have faith or not have faith. We all possess the ability to be kind, to be caring, to be empathetic, to, you know, to help our environment, to be inclusive. And there are a lot of people of faith that work at our program, and there are a lot of people that are not. It's a wonderful mixing ground. But what has everybody in common, of course, is the passion they have for the for these kids with type one, right?

Scott Benner 26:21
I wouldn't want to scare off people who are like, oh, you know, I'm not looking for, I'm not looking for this impact, but I love what you're saying. Like, don't get me wrong. Like, I just want to make sure the people listening understand that it's for everybody. It's for everyone. Yeah,

Dr. Ernie Fernandez 26:35
absolutely. Did

Scott Benner 26:35
I stop you before you got to your fourth pillar? I think I did. No,

Dr. Ernie Fernandez 26:38
the fourth pillar was service. The fourth pillar was how we how people look beyond their own needs, that to build those relationships, right? And and that's a key issue.

Scott Benner 26:49
Tell me again, three weeks. And how many times a year do you run the camp for three weeks? All right, now this isn't an ad. I'm just here to remind you, keep listening till the end, and you're going to find out how to enter the giveaway to win a free slot at Camp Sweeney for your child. And we're giving away two today. One Ernie is going to give away. He'll give you the details about how he's going to give that one away. And then we're going to pick a second child at random. Both of these will be at random, and that second child will be completely covered by us, med, US med.com/juicebox, but all the details about how to enter, and trust me, I want to make it super simple to enter will be at the end of the episode. So

Dr. Ernie Fernandez 27:32
we have the three, three week sessions in the summer. You know, a lot of people say, Well, you know, what, if I live real far away, how do I get my kids there? Well, we have what's called a point to point service that's also available that people can from any city. Can fly their children to DFW, and we meet them there at the gate, basically with our staff, and take up the camp. Most families like to come down to Texas to least bring them, they'll use the return service that's available for that. You know, our website has all the the enrollment information on there. You know, it costs us about $6,700 to have a child there for three weeks. That's our cost. We ask our families to pay 4700 I spend my whole year fundraising to supplement every single child $2,000 to come, because I feel type one is expensive as it is, and it puts a lot of stresses. But in addition to that, 50% of the kids that do come get significant financial aid above that. I mean way above that. Some people come, you know, if they're on Medicaid or, you know, it's based on financial need for just almost nothing. We provide campership aid, and about half of our kids do qualify for that. You know, our motto has always been, we've never denied a child, a child with diabetes that comes to swni for financial need, we try to always make sure that we have that available. It gets tougher and tougher in this economy to raise that money. We're not a public organization. We're a profit, a non a private nonprofit, yeah, and so, you know, but

Scott Benner 28:59
I just did the math earning. I think the low number you need is 1.8 and that's, seems like that's the low amount of what you have to fundraise every year Am I

Dr. Ernie Fernandez 29:06
did 2.6 million a year is what we give out charitably every year. Wow. But that's, you know, that's my job. That's what I do. I mean, my job is to do that. You know, parents job or to take care of their kids. Parents jobs are to try to meet their needs. And you know, if Sweeney Can, can help in any way, you know, we try to make that available. You know, they can go to one of the meet and greets. We have virtual meeting reads that are available seven days a week. If somebody just goes to the website and signs up for one, one of our program directors will get right on them and go through all the little details, because people have a million questions, what do we do with our Riley Lake? What do we do? You know, with the laundry, how does the laundry service taken care of? Do you have dry cleaning? You know, all those questions that people have. You know, that's what those, those virtual one on ones are. Who's

Scott Benner 29:48
asking you about dry cleaning at summer camp?

Dr. Ernie Fernandez 29:52
More kids, more parents. And you want to know? I mean, it's unbelievable. You know, 40 years ago, that would have never been asked, okay? Mm. It. But nowadays, it's really the thing, you know.

Scott Benner 30:03
So if I can come in right say, I come to campus, we need to drop my kid. How long am I there as the parent before I'm vamos and how long am I there on the drop off? About

Dr. Ernie Fernandez 30:12
two to three hours. It's a fairly extensive process. We do a big session before you come that we do over the phone that gets all the preliminary gluco information, all this, you know, depending, I mean, I'm putting words in your mouth, depending on what regimen plan you're on. You know, we get all of that information ahead of time, but then we go through a fairly extensive procedure of being interviewed and making sure that we're not missing any nuances in the child's care, and make sure that you feel very comfortable with how they're moved in, and that all this stuff is taken care of. We want parents to feel very comfortable. We want the child to feel very comfortable. We don't want this to be an experience where, oh my gosh, I have this anxiety. I think first time, parents all have a little anxiety, but I'll tell you how they get over this. You know, everything we do is broadcast at night at Camp tween, so all of our things are broadcast live, and everybody watches everything. Parents always joke about it, that it's kind of their proof of life concept. You know, we have these flag laureates every night, and parents are we have 1000s of people that watch that live every night, people from different sessions and everything. And we every event, whether it's a campfire or it's a, you know, a talent share whatever, all broadcasts live. And, you know, it's become very sophisticated over the years. You know, you have multiple media people and stuff that that make these things happen. And you know that every one of those parents is glued to those, those things there, you get feedback immediately. My child wore the same shirt two days in a row. What's up with that? You know? You know, I mean, you get everything back. It's just amazing how much I don't think parents miss a beat after that and after the child has come to camp. Sweet for many years, they typically travel to Europe, and you can't get a hold of them until

Scott Benner 31:52
the flag lowering, but I did see Milan. Well, yeah, once they get comfortable with it, right? How about the kids like once, once a kid gets there, a new camper, does it take them a couple of days to I mean, I'm sure everyone's different, but is there kind of a marinating period?

Dr. Ernie Fernandez 32:09
You know, it's pretty quick, because we're very quick to identify, and I'm not going to go into this, we're very quick to identify anxieties. Long before the child even arrives. We're ready to meet that like, if we feel a child's insecure, like they potentially might be homesick before they even come, because we could tell that by the pre camp interviews. We are ready for that the second they arrive. I mean, we have we're ready to put them in left brained activities. We have things that we do right away to meet those kids needs so that they can become feel comfortable and secure. Because we don't want anyone to feel insecure. We want everybody to feel good. We want everybody to feel, you know, like they're part of that. And so we tried to anticipate that long before they arrived, right? So that we're successful with that. It's

Scott Benner 32:52
awesome. So Ernie, people are listening, don't know, but I, I figured we wait about a half an hour before we bring this up, because I figure people who are still listening are very interested. You're very generously going to do a giveaway for one listener of the podcast to send their child. Now you said that most kids pay 4700 and they have 2000 taken care of by you. But for this one person, you're going to ask people just to pay $500 that the amount is to pay

Dr. Ernie Fernandez 33:18
the just to pay the deposit. Only you know, once that that is awarded through through this podcast, we will contact our registrar, can contact that family and give them a special link and a discount code that would let them sign up. That's

Scott Benner 33:31
awesome. Okay, and we're gonna figure out how to give it away. But I would love for people to visit your website. Now, I know you can't go changing your website to accommodate my giveaway, so I'll take care of the giveaway on my side. But what is the website, if people want to go check out, is it just campsweeney.org It just

Dr. Ernie Fernandez 33:48
campsweeney.org and it's spelled a little funny, because it's got its camp and then S, W, E, N, E, y.org, a lot of people that leave out that E between the N and the Y, okay,

Scott Benner 33:58
all right. And there I'm looking at it right now. There's a tab for camp life. What parents would want to know how you can help summer live. Keep up with Sweeney. Join our staff. There's a ton of set you can make it, by the way, if anybody's listening, this doesn't have a kid to send to it, but thinks it sounds amazing. You can make a donation to camp Sweeney right there on the website as well. Help Ernie dig through that 2.6 million he's got to raise every year. My goodness, gosh, thank you. Must be out there hustling. Man,

Dr. Ernie Fernandez 34:24
it is not easy. But you know what? I wouldn't trade it for anything in the world. 41

Scott Benner 34:29
years. What's the biggest difference generationally? Like, what do you see change each generation about what the camp needs to offer people to keep kids engaged?

Dr. Ernie Fernandez 34:40
The superficial answer, of course, is all the technology. I mean, obviously staying up with all the technology and being on the cutting edge of what people are going to have and the tools that they're using to treat their type one diabetes, that's what's probably changed the most. Obviously, year to year, everything is got a new version, a new type. Highlights come. Now with a new pump. Actually, you know, before camp, I'm always looking way ahead of what's coming out to be prepared for that. Yeah, but actually, what is deeper that has changed the most over the generations is, really, there's a lot of stuff, you know, loss of value in our kids. I feel that the way media is being delivered to children these days is very targeted, and often vulnerable people are very subject to being devalued because of what is being, you know, driven their way through the channels that they become obsessed with. I could tell you my non diabetes practice, my regular pediatrics practice. You know, we struggle with so much anxiety and depression because there's so much addiction to to so many of these devices and these these social media streams that really lure these kids into basically thinking that that's what they need to do to become successful, is, is to is to be on that. And so Connor in that has taken a lot of work on our pillars. But fortunately, the basis of what we do with our kids, with the four pillars, is very successful in dealing with that, right?

Scott Benner 36:01
That's, yeah, listen, it's hard not to, like you said, it sounds superficial, because people say it all the time, but it's not. It's not lost on me at all. Like you can get a an incomplete or, you know, overly shined up view of what the world is. And now, if you're trying to make you know what is pretend online into reality. There's no way to do that, right? You're gonna fail at that every day. And so you're saying that these kids, younger and younger, are seeing something modeled in front of them that is unattainable, and they're striving to attain it, and then it's becoming a source of depression or anxiety for them that they can't get to it, am I understanding that right 100%

Dr. Ernie Fernandez 36:41
and you know, that's what one of our missions is. One of our pillars is to over, try to overcome that, and get kids to recognize what they really have right that that is, you know, gives them their superpowers.

Scott Benner 36:54
So, on top of everything else, at Camp Sweeney, they're not going to be on tick tock Instagram or whatever for three weeks.

Dr. Ernie Fernandez 37:00
No, you know, you you probably didn't pick up on this earlier, but you know what we I said, we have our own FCC radio station. Yeah, you may ask me, why on earth does the summer camp have a radio station? And, you know, it's so hard to get license. Takes years. You got to go to Washington. You got to plead your case for the SEC. It's difficult, and it's a big investment. And that was because in the early 90s, we realized that the media kids were being bombarded with had messages that were not positive for them, and so we recognized way back when, that we needed to create our own media sources. In those days, we didn't have the internet, we didn't have all this. So we said, You know what, we'll build a radio station. The kids will program. It will select music and programming that is, that builds these kids up, as opposed to taking kids down. That's how it all started, actually, you know. But once you have a radio station, it's difficult, because you got to keep it running year round. And so we have a local high school that has a broadcasting class, and they broadcast for us in the off season, and then we, you know, we run it the rest of the year. It's kind of a long, complex thing we've done, but, but it's all about what kids are hearing and what they're listening to and what they're seeing. Even our counseling staff, that's just remarkable in our other staff, you know, we have 160 total. You know, they're not allowed to have any cell phones themselves at Camp Sweeney. So when staff come, they're given a camp Sweeney iPhone, which is a real iPhone, but it's all locked into the apps that we use, and so that we're not bringing in social media from the outside, you know, because it's so easy for a staff member to get sucked in themselves and then, yeah, you know, you've lost their ability to inspire. I have a few people

Scott Benner 38:34
in my life. I'd give you $4,500 just to take them away from social media for three you wouldn't even have to let them swim in the lake. If you could just get that accomplished. I think it would be worth it would be worth the

Dr. Ernie Fernandez 38:43
money. Yeah, you know, you know, you just have to look for the good, you know. I mean, there's good things the media does, but so often these kids, these vulnerable kids, are very lured into it, and it, it doesn't help their overall, overall well, being, right? And that's what we're about, is, you know, it's great that these kids have a phenomenal time at camp Sweeney in the summer, but it's better for me to see them when they're 36 when they're 46 having a fantastic time in their lives. You know, being productive. You know, doing wonderful things while having to deal with a lot of the challenges and burdens of type one is bestowed on. It's interesting. You

Scott Benner 39:21
brought that up because it was my next question, because you've been doing this for so long, you must know adults who have gone through campus, kids. And is it, I don't know if it's a thing you're trying to quantify with, like, you know, follow up surveys and everything, but do kids end up having more desirable adult outcomes after after being campers,

Dr. Ernie Fernandez 39:41
absolutely and when we do our data mining, which we do in August, to rebuild our pillars every year, we contact a significant number of people 10 years out, 15 years out, and we have specific objective questions we ask that are mapped to what we're doing to improve our our pillars each year. And. It's hard to get these kids, first of all, because they don't live at home anymore, and you have to go through a lot of going through parents and going through people they know and to get to them. But we do that, and we have a set now, anecdotically, I have many patients of mine that went to Camp Sweeney, whose children, sadly or happily, have type one now, and also go to Camp Sweeney again, in the second generation that I've taken care of them. You can see those parents, you know, and you can see how they're affected. But from a more I don't want to get away from the fact that we're very data driven. And so all these pillars sound great, but if they're not really affecting the kids, then they're not great. And so we spent a great deal of time looking at our outcomes to make sure that the work we pour into doing this is something that's that's worthwhile. Yeah, I

Scott Benner 40:44
mean, that's what I'm taking away from. I'm wondering why you're not running NASA instead of this, I thought I'd ask the question. You would say, what you said, you know, like, I want to go back to your points, like you set up pillars. Anybody could say, Hey, here's some things. These are our rules, and we're going to go with these because it seems right to me, and I'm the one setting it up, but you're looking at enough data to tell you, like, I'm assuming the pillars were different five years ago, is what I'm saying. Like, you're a general, very

Dr. Ernie Fernandez 41:09
different 41 years ago. Because when we first started this, you know, we said, okay, these sound like good ideas. They could work in theory. And so many things did not work. I'm telling you, this was not, you know, swni Today is totally different than it was in 1991 it's different every single year. Because what we do is we create from those, from that data, we create what are called objectives, and then the objectives become initiatives, and initiatives go into the pillars. And so there's a whole process of a lot of people working on this. And it goes down to the micro detail. I mean, just how the snacks are figured out. You know, every single class, how it's taught that we make the right objectives in basketball this year. How did we do with paintball? What were the How did that work out? Were we able to reach this type of child? Were able to affirm this type of child, if a child had Asperger's, was the music not where they were sitting, was it too loud that it caused this? All those things are constantly looked at and reviewed to be adjusted in a micro level, there's a lot that goes into it. I gave you the Reader's Digest version. I mean, it takes the entire year to make this happen well, and it

Scott Benner 42:15
takes decades to see things that need those adjustments too, right? Like you have to, I'm assuming come together in meetings where somebody says, Hey, did you notice that in this thing we had the music was so loud, people kind of were disinterested and didn't care, and then you have to make that adjustment. Next thing you're not just saying, like there's a magical decibel level where people

Dr. Ernie Fernandez 42:33
there is for every type of activities. We have it written, we know what the we know what they are. We know the types of songs, we know the beats, all these little things are very carefully looked at. We have a very careful plan of how we roll all those things out. And every year we change it a little bit to make it better and to make it better. And we look at the parent feedback that comes back immediately. We look at our physicians feedback that comes back immediately. We look at the blogging that's happened all, all summer long, by the people that are observing, because we have people that's their job to watch. You know how staff are doing, and then we start looking at the kids that are number of years out. So all of that comes together to help us adjust. Are you?

Scott Benner 43:11
This might seem disconnected for a second, but there are you a family man? Do you have children? Are you married?

Dr. Ernie Fernandez 43:15
I am not. No, this is what I've done. I've made. I had that choice. I had to make that road change early on in this program, because it was, this is what I you know, I run my practice. I teach at UT Southwestern. I do this. So it's, it is something we do. I have a lot of great people that help me. I mean, we have a wonderful staff that runs, works year round, doing all these things I

Scott Benner 43:38
couldn't imagine. Actually, I was sitting here thinking like, There's no way he's married and has kids, because how would he do all this stuff like that? It really does feel like a, I'm not trying to butter you up, but like it feels like it felt like a selfless endeavor, as you've been talking about it the entire time, and I was trying to figure out where you'd come up with all this time if you had, you know, those other responses absolutely, you

Dr. Ernie Fernandez 43:58
know, that was a decision I had to make early on, because I said, you know, it's either this or not. And as this grew over the years and it became bigger, it became something that, you know, you realize it becomes important to kids and important to families, and you want to make sure that you're meeting their needs every year you we glossed over this. But, you know, I laugh a little bit about raising the amount of money we have to raise each year. That is an incredible endeavor. I do that almost every day. Yeah, last night, I can't tell you how many emails I sent out last night, pleading and begging. You know, I have a little event next Thursday, and we're trying to get, you know, that's one of our one of, I do three big fundraisers, and it's one of them, and it's one of them, and just trying to get that event going is, is quite, quite the trick. But, you know, I find that that if people have a mission, people and it's a good mission, other good people come and join, and they all come together, and they, they say, how can we help? You know, what can we do? And and that's, that's how you grow things. You know, together. Yes,

Scott Benner 45:00
$4,700 cents a kid. That's right, exactly,

Dr. Ernie Fernandez 45:03
yeah. And do you know that's one of my admissions is to try to get people, kids sponsored. Probably not appropriate. But canceling that org, we don't have a link to this, because it's we. I never link our fundraising things to our main website, but if you put slash gift, it has the fundraiser I'm doing next week, and that has an online auction and stuff. And if somebody felt the compulsion to bid on one of those things or give towards that, I would it would be great. You know, as I said, all of these fundraisers, I don't usually tell our families about I do it, you know, because I they're burdened enough, and so that's why I don't have direct links from our website for them. But I do have indirect ones that I give people that I try to fundraise. You know, one of the other things is that, you know, breakthrough T, 1d which was formerly jgrf, you know, they do a lot of great work in our country, and I try very hard not to try to take any funds from them. So all the fundraisers that swni does is really, in the non diabetes world, I go to people from my general practice that I take care of, and that's the population that I try to raise money. And so then I have to teach them what type one diabetes is, because none of them know anything about it. I have to try to inspire them to want to give, right? And so it's a little bit of a taller order, because I don't try to go after the people that they go after, because I feel that's they. They do such good work. And I don't want to, I don't want to, to cross that, that line with them. It's

Scott Benner 46:27
interesting. I'm looking here you have a silent auction. There's some great stuff here. There's sports tickets and getaways and hotel I know.

Dr. Ernie Fernandez 46:33
I'm sorry that I said that. I don't usually tell people about this. I'm

Scott Benner 46:37
happy to tell them about it. I'm just going to tell you, you're going to have trouble getting people bidding on these cowboys tickets, though, who I

Dr. Ernie Fernandez 46:43
know I know, very promising, does it? I

Scott Benner 46:46
mean, I'm not going to tell you that I grew up in Philadelphia, and yesterday was the best day of my life watching the Cowboys suck for four hours, but I

Dr. Ernie Fernandez 46:54
don't think you would ever be even interested in that, but,

Scott Benner 46:58
but this is awesome, man. Do you really? You're doing really great work. I don't want to, like, I don't want to embarrass you, but this is really wonderful. I mean, just really,

Dr. Ernie Fernandez 47:07
yeah, I mean, we're just starting. I just have those things. If you were to accidentally put, you know, between you and me, you would you would put slash 5k up there. You would see one of my other websites that I've that's an that's a big family thing that I do, but that's not till May. But people are welcome to look at all those things.

Scott Benner 47:23
I hope they do like I said, we're gonna, we're gonna get a bunch of people tell them about camp Sweeney so they can come look at it. One person's gonna win. You know, basically it's gonna cost you $500 to go to camp Sweeney and nothing else for your kid for three weeks, which is just, that's just insane. I really appreciate that. What else can I do to help get the word out seriously? Take these couple of minutes at the end and tell me. End And tell me we

Dr. Ernie Fernandez 47:43
would like to serve as many kids as possible in the summer of 2025 we have extra capacity this, this coming year, just to get to know us. If you can't come to one of our events, you know, if you could just go under, under the parent involvement and just sketch, you know, schedule one on one. You know, you could talk to me or to one of our program directors, and have time, you know, to visit and learn a little bit more of, really, what we're about going through a typical day, what the kids do, what? What are the things you know, going through the schedule, you know, making sure the child gets excited about this. You know, if anyone has any medical providers that want us to send stuff to their offices or do a virtual lunch with them, sent, you know, to talk to their medical providers, to give them information. That's what we're here for. Is to is information, is to share what we offer, you know, to try to get as many kids to Sweeney as possible every year. The last year was the first year that we were 1% off on our enrollment. We're always in 100% capacity, always. And last year we were at 99% and I was thinking, how did that happen? And it happens because sometimes you don't get the right ages or genders to fill everything exactly right, right. But I think the economy in the last year or two made it more difficult for some families to be able to it. And so I think people don't realize that we do have campership aid available. You know, for children, we try to make it work for them as best we can. So that's one of the reasons why, you know, we try to get out everywhere to tell them, You know what we're about. Because I think a lot of people don't know about our program, and I would love them to be be part of the swni family and our mission. Well, I

Scott Benner 49:13
hope this helps you do that. I really do. I appreciate you taking the time to come on and explain this to me. It's really wonderful. I forget how, like, somebody got me in contact with you. Yeah, a listener that, I guess, that sent a kid they, they sent me an email, and they're like, you know, you should, you should talk to Ernie from, from this beautiful camp. And I'm just really glad we did this today. Thank you. It

Dr. Ernie Fernandez 49:33
was, it was a listener from the north shore of Chicago there, I think, a wonderful, wonderful family, Mr. Sharon, you have Sharon, I think you must have met him at some time, and and his little boy, I think is a youngster, maybe seven or eight years old, and comes from that from Chicago there. Yeah. In fact, they're the ones that are hosting the big meet and greet that we're doing there with the video game truck and all. Okay, you happen to be in the Chicago area. That's going to be quite the event coming up. Out there on

Scott Benner 50:01
can I learn about that at Camp sweeney.org No, we

Dr. Ernie Fernandez 50:04
actually don't have those on there. I wonder if we should. But yeah, they are on there. Absolutely. They're honored that that that on the bottom, where it has all of the events that are scrolling on the bottom. It absolutely has that on there. So this is the December 8, the Chicago Oh,

Scott Benner 50:16
I see the scroll. Okay, I'm scrolling now. Oh, you have so much going on. That's why it's not right there in the front.

Dr. Ernie Fernandez 50:22
It definitely would be on there. Awesome. There's so many things that I apologize. It's hard for me to keep up with all that different. I

Scott Benner 50:28
don't know how you're awake. When do you sleep? Exactly? Not much. Is that the answer?

Dr. Ernie Fernandez 50:34
You know, there's plenty of time for sleeping. You know, you have to find time to serve. Can

Scott Benner 50:38
I ask you one last question? It's got very little to do with this, but more about about this thing. You've been involved with swni for 41 years. I haven't asked you how old you are, but you're not 43 so no, you give a lot of thought to how to, like, how do you pass this torch to someone else at some point? Absolutely,

Dr. Ernie Fernandez 50:55
I think about it all the time. I feel like I have another easily, 10 to 12 years. But there's so many people that do help. It's true. I'm the only one that really kind of does this year round. There are a lot of people that believe in this mission and passion, and I know that as it gets to be that time, somebody will submerge, to come up and be and do this. Because, yeah, 7576 years is just the beginning for Sweeney, you know, right? People always ask me, What are you going to do when? When diabetes cured? I'm always asked that question by children. I always say, you know, when diabetes is cured, we will be done. That will be our mission for that. But knowing what I know in all the years that I've taught this, I know that working towards secure is working towards the kids that have diabetes now and giving them more successful, healthier lives, and that's really the cure we can give. I mean, that's what we're about. There's a lot of stuff in research that I'm excited about and could be coming down the pike, but the one thing that is sure is that kids have diabetes today, yeah, and they need to feel good about themselves today. And that's that's really what our mission is. And what swni is

Scott Benner 52:07
you can't undervalue what it is to be hopeful, to know people are out there trying, whether it happens or not, they're trying, you know. And I always tell people that you should live like a cure is not coming but, but hope, like one it's right around the corner. I just mean by that is like, sometimes I worry that if people think, Oh, it's this isn't going to be much longer, that they maybe don't take as good care of themselves in the moment, thinking it's not a forever thing. But I like that balance. Just take great care of yourself today, be ready for when it comes, and then, you know, hopefully it comes in your lifetime and you can enjoy it, but until then, there's a ton of value. I think you've been talking about it the entire time. You've been talking really and understanding that there are people out there hammering away and on your behalf, whether you know about what they're doing or know who they are. I think that should make people feel good.

Dr. Ernie Fernandez 52:54
Absolutely true. Yeah, no, absolutely that is absolutely true. And

Scott Benner 52:58
I only asked you the last question honestly, because I've built this thing now, and I don't think I work nearly as hard as you do, but it is my 24 hour a day job. And I do wonder, like, I see all the people it helps, and you think, like, well, once I can't do it any longer, like you've got this fully formed thing that you know what it does for people. Like, how do I make sure it continues on? Beyond me, I struggle understanding what to do about that, so I just thought it was interesting question to ask you that's all well, that

Dr. Ernie Fernandez 53:26
is so important, and you are so kind to do this and to share the Word of sweetie to others. And we're hoping that this first conversation to families across the country to come visit our website and maybe visit do a virtual one on one with us, and just talk to us. I

Scott Benner 53:42
hope so I really do. All right, Ernie, I appreciate you taking this time with me. Hold on one second for me. Okay. Was I right? What a lovely man. So we're gonna pick two kids, right, absolutely at random. Ernie is gonna cover one of them, minus the $500 although we're looking for ways to get that 500 covered. But at the moment, one of you is gonna win a $500 all inclusive trip to camp Sweeney, just for 500 bucks instead of $6,700 what it usually costs. And one of you is gonna get an absolutely free trip to camp Sweeney. That's three weeks of camp, Sweeney on us. Med, now what are you gonna do to win? Well, I'm gonna tell you about that in just a second. Hey, kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know? What else you might enjoy? The private Facebook group for the Juicebox podcast. I know you're thinking, uh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community, Juicebox podcast, type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in, but make sure you're not a bot or an evildoer. Then you're on your way. You'll be part of the family. Me. Okay, I'm back. Here's all you have to do to enter ready. Now the first thing is, we want to make completely sure that your kid wants to come to camp Sweeney. So first you're going to go to camp sweeney.org and spend some time there, really figure out what the camp's all about, where it's at, and if this is something your child is genuinely and truly interested in doing. If it is, that's step one. Step two. If you're a listener of the podcast, which must be because you're listening right now, but you're not following or subscribing in your app, just go back into your app and follow or subscribe. So if you're in the Apple podcast app, hit follow. If you're in Spotify, hit follow. Other apps call it subscribe, but subscribing or following is basically the same thing. So go into your audio app and hit subscribe or follow if you're listening online right now, that's cool. Just, you know, go into Apple podcast or Spotify any free audio app and follow or subscribe to the show. Okay, so now you've gone to camp, sweeney.org, you've looked around. You're super sure your kid wants to come. They're awfully excited. You've hit subscribe or follow in your podcast app where you're already subscribed or following, and then all you do after that is go to Juicebox podcast.com scroll to the bottom and subscribe to the newsletter with an email address that will reach you. That's it. Everybody who subscribes from right now, which is, let's see when's this gonna go up, November 15. So from November 15 at midnight until you know what, let's do it. Let's do it straight through Diabetes Awareness Month and through the weekend. So let's call it December 1 at midnight. So from now until December 1, at midnight, Eastern Time, everyone who subscribes to the newsletter follows the podcast and checks out campsweeney.org is entered. Then we're going to do a random drawing. And let me make sure I say how I'm going to do this first the first person I pick out will be the winner of the camp Sweeney Award, and the second winner will be the person who's going, thanks to us. Med, how's that sound? First one I pick is that? Second one I pick is us. Med, and I'm gonna pick a couple of extras in case one of you gets flaky, or something like that, or your kid, you know, is like, I don't want to go to camp. Whatever Am I done to happening? We're going to pick a few. How many will I pick? Just to cover myself, I'm going to pick six. Okay, six names. We're going to get the first two locked in to go to camp, and then those last four, I'll find something nice to send off to maybe a little swag from the website, or something like that. Campsweeney.org look around, make sure it's something you want to do, subscribe or follow in your podcast app, Apple podcast, Spotify, anything like that at all. Apple, Amazon music. I Heart Radio anywhere you can get audio. And then go to Juicebox podcast.com scroll to the bottom and subscribe to the newsletter. Now you're saying, Scott, what if I'm already subscribed to the newsletter? You make a fair point. If you're already subscribed to the newsletter, you can go down there to the bottom at Juicebox podcast.com and hit contact, and that gives you an opportunity to send me a message through the website. In that message, just say, I want to enter the camp Sweeney giveaway, and I'm already a newsletter subscriber, that's all you have to do. I'm incredibly excited to bring this opportunity to you. I was really touched to hear from Ernie. He's just a lovely person. After talking to him, it motivated me to reach out to us Med, to see if they could help me send another child. They very graciously and immediately agreed. It's awesome. I'm feeling so good about this, especially around World Diabetes Day and Diabetes Awareness Month. I hope you're excited as well. I'll talk to you soon, and if you want to do me a rock solid one, even though I wasn't supposed to add it in here today, hang on for another minute and listen to this ad from us med. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, US med.com/juicebox, or call, 888721151, 887211514, us. Med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys, they have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us med carries everything from insulin pumps and diabetes testing supplies to the latest CGMS like the libre three and Dexcom g7 Nine, they accept Medicare nationwide, and over 800 private insurers find out why us med has an A plus rating with a better business bureau at US med.com/juicebox, or just call them at 888-721-1514, get started right now, and you'll be getting your supplies the same way we do. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend if you're ready to level up your diabetes care. The Diabetes Pro Tip series from the Juicebox podcast focuses on simple strategies for living well with type one. The Pro Tip episodes contain easy to understand concepts that will increase your knowledge of how insulin works. And so much more, my daughter has had an A, 1c, between five, two and six, four, since 2014 with zero diet restrictions, and some of those years include her in college. This information works for children, adults and for the newly diagnosed and for those who have been struggling for years. Go to Juicebox podcast.com and click on diabetes pro tip in the menu, or head over to Episode 1000 of the Juicebox podcast to get started today with the episode newly diagnosed. We're starting over and then continue right on to Episode 1025 that's the entire Pro Tip series. Episode 1000 to 1025 the episode you just heard was professionally edited by wrong way recording, wrong way recording.com, you.


Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate