#690 Singing in the Rain

Bricen has type 1 diabetes and 11 other diagnosed issues. His grandmother is here to tell us his story.

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

Scott Benner 0:00
Hello friends and welcome to episode 690 of the Juicebox Podcast.

Cheryl's grandson has type one diabetes and the 11 other diagnosed issues. Among them are seizures, autism, mitochondrial dysfunction, and he is visually impaired Sharla and her husband are Bryson's primary caregivers. And they have custody of him. Bryson's story is interesting to say the least. And I hope you enjoy it. While you're listening today. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. If you are the caregiver of someone with type one, or have type one yourself and are a US resident, please head over to t one D exchange.org. Forward slash juice box join the registry. Take the survey, the whole thing should take you fewer than 10 minutes. Your answers to that survey are going to help people with type one diabetes, T one D exchange.org forward slash juicebox.

This episode of The Juicebox Podcast is sponsored by us med get your diabetes supplies from us med all you have to do is go to U S med.com forward slash juicebox or call 888-721-1514. Get your free benefits check today. The podcast is also sponsored today by Ian Penn from Medtronic diabetes in Penn takes the guesswork out of dosing by using its app that uses your glucose levels and carbohydrate estimates to recommend the dose that's right for you. It also does a lot more I'll tell you about it later. Learn more Get started today at in Penn today.com. The podcast is also sponsored by touched by type one all they want you to do is check them out. Go to touch by type one.org Find them on Facebook, or Instagram.

Cheryl 2:34
Hello, my name is Cheryl. And I live in Nashville Tennessee. My grandmother Bryson Henderson. Who is a medically complex child diagnosed with diabetes January 20 of this year.

Scott Benner 2:49
Alright, show a couple things. You know the word futzing? That's not a southern word. Stop touching things. Keep your hands up. So okay, so, Bryson is your grandchild? But are you do you care for him? Like is he live with you?

Cheryl 3:11
Yes, he is. My husband and myself have custody and we've had custody for the last few years. Okay, how

Unknown Speaker 3:17
old is he?

Cheryl 3:19
He just turned 15.

Scott Benner 3:21
When was he diagnosed?

Cheryl 3:24
He was diagnosed on January 20 of this year. 21.

Scott Benner 3:29
Oh, okay. So you're not even a urine yet? No. Okay. Without taking I don't want to hear too many of your personal details. But how did you come to be his caregiver?

Unknown Speaker 3:42
Um, his parents for

Cheryl 3:46
just struggling to keep up with the medical complexities that he had. And so he came to live with us for about a year. And after he'd been with us for a year, then we sought custody. And so he's been with us since he was 10. And we've had custody since he was 11 years old. We've always been very involved in those laws,

Scott Benner 4:12
even prior to that. Your daughter or your son's child, my son, your son shot, okay. Okay, so he's been with you for four or five years. How old are you? I am 63. Okay, husband similar age a little older.

Cheryl 4:30
No, he's older. He's 74. Sure, yes.

Scott Benner 4:36
Woo is at some point. Were you a trophy wife?

Cheryl 4:41
I am always been a trophy wife. No, I yeah, we've been 20 years I guess. I guess I'm considered a trophy wife. He might disagree. But I like that.

Scott Benner 4:51
Oh, that's good. I still think he parades you around to his friends and he's like, look at this one in our 60s. Okay, So any other kids for you?

Cheryl 5:05
Yes, I have another older son, as well. So I have two children, only one grandson. Well, actually two, one Bryson that I have custody of. And then Bryson has a little brother. He's three.

Scott Benner 5:19
And his little brother doesn't live with you.

Cheryl 5:23
Excuse me, his little brother doesn't what

Scott Benner 5:25
doesn't live with you? No. Okay. All right. I think I understand what our, I guess let's, let's start at the beginning for Bryson, how old was he, when he when he had his first medical issue.

Cheryl 5:41
He was born with a medical issue. When he was born, he was in the ICU for 10 days, he had trouble regulating his temperature. And it was obvious he has hypotonia. And that is where when you pick them up, there's actually no resistance at all. He has very low muscle tone. So it's also known as rag doll syndrome, because that's how they feel. And so it was known at the beginning he has a stigma, which is where your eyes involuntarily move, and that is a brainstem issue. So we knew from the beginning that there were that there were issues,

Scott Benner 6:27
okay. Hypo,

Cheryl 6:30
hypo, hyper tone, hypertonia

Scott Benner 6:32
hypotonia, I say, Okay, I was stopping at the wrong spot in the work. Born with that, in that's not something that's getting better, right. Like that's a lifelong illness.

Cheryl 6:46
That is, it is actually causing problems right now. He's in a efos. And he actually broke his foot, I guess, about five weeks ago. And it's because his muscles hypertonia is when it's like a rubber band. So when you are like you and I are or muscle is always, you know, tied and ready to go to some degree his arm has are extremely relaxed unless he calls them to us. And so the muscles in his legs as he gains weight are no longer able to hold his weight. So his ankles are collapsing. So he's in a efos. Now, just to stabilize the stance,

Scott Benner 7:33
and this is an autoimmune disease, correct?

Cheryl 7:36
Well, is a whole stems from what is called mitochondrial disease or dysfunction. And that is he was born with it. And it's where the body does not convert food and oxygen. And to normal cell function. It doesn't put it into the mitochondrial can absorb it. So like diabetes, it's an energy channel that is blocked. And because of it, he has the low muscle tone. He is cognitively delayed and has seizures. And he is autistic. And he has high anxiety. And he was born with optic nerve atrophy, where his optic nerve did not have the energy to develop correctly in utero, and he is visually impaired and attends our state's school for the blind.

Scott Benner 8:39
Sure, that's a lot. Okay. It is a lot. Yeah. Are you okay?

Cheryl 8:44
Oh, yeah, yes, yes. Yes. I mean, it's like all of this, most of his diagnoses came within, you know, the first three years of life. It's like, we knew he was having seizures. He, he first presented with apps and seizures. So he was having these staring spells. And we knew something was going on. We just weren't really sure. And I actually had to video one before they took us seriously, that really was seizures. And when they did the EEG, they estimated he was having probably 150 Absent seizures a day.

Scott Benner 9:24
Oh my gosh. Okay. Let me try to understand trying I'm trying to find context. So callback, can you tell me what an average day for him is? Like?

Cheryl 9:37
Yes, an average day for him. First of all he has. He's cognitively delayed enough that he does not realize that his life is any different than mine or yours or any other 15 year olds. So he is a very happy, very joyful child. He gets up in the morning. He slams I think he's talking right now he's into not not jokes. So while he's eating breakfast, he's telling me not not jokes. He's autistic. So they're the same jokes, the same, you know, five or six jokes all the time. But we both laugh each time they're told. And then he cannot bade himself all the way. So he showers and I help him. And then he needs help putting on some of his clothes, especially he can't, because of the hypertonia. He has very low fine and gross motor skills. So he's not at it's very hard for him to button blue jeans and the zip blue jeans. And so right now we're lucky enough that it's then that we can use kind, he can just pull up and down by himself. So I help him get dressed. And then he gets on the bus. He has his vision is impaired enough that he has to have a human bio at all times. So if you will just see me putting him on the bus. He would be holding my elbow and I would be guiding them on the bus. He goes to school, he loves school, all of his therapies are at school. The school he attends is actually a residential sim Center. We're lucky enough to live close that he can go. But since it's our State School for the Blind and blessed, bustin everywhere, so he has a wide variety of children. It's a huge campus, you know, they have an indoor pools, or he may go swimming, they have an indoor, oh, in LA, he might go bowling. They have a huge auditorium. And so they're always having, you know, one of the grades will put on productions or plays or the choir will sing.

Scott Benner 11:52
Does he have? I'm sorry to cut you off? Does he have the ability to manage himself? At the bathroom? For example, I'm a healer. He takes a human guide to the bathroom. But then does the guide help him through the whole process? Or does Bryson handle some of it himself?

Cheryl 12:10
No, he is self sufficient. We've got him to the point where he is self sufficient in the restaurant. So I mean, we're he you know, at the house, he would be sitting on the couch listening to music, just like any 15 year old would do when they got home from school. And if he has to go to the restroom, he just gets up and goes. Because he has autism. He struggled or used to struggle with privacy issues he did not understand. But we've really honed in us in the school I've really honed in on so he's more aware of

Scott Benner 12:42
that privacy like modesty.

Cheryl 12:44
Modesty. Exactly. He's Yes.

Scott Benner 12:48
Gotcha. Do you work?

Cheryl 12:53
No. I am a retired industrial engineer.

Scott Benner 12:56
Oh, wow. So you have your you have time to to, to be with him?

Cheryl 13:02
Yes. When I retired, I did take a part time job as a hearing screener for newborns at our local hospital. And we got custody, they actually when I had it was a part time job a lot of times just a couple of hours a day. And my husband would watch him when I was gone. He's also retired. He's a retired banker. So we so he was always covered by one of us if he wasn't in school,

Scott Benner 13:29
okay. When I don't, I'm sorry, I don't want to be like, I don't want to be a bummer. But I'm wondering in 20 years, what is Bryson do?

Cheryl 13:40
You know, in 20 years, that's the fear. Mitochondrial Disease is can be a progressive disease, and many of the children that are severely affected, do not live to the age of five. So we consider ourselves so blessed that Bryson's here, and then that he was not affected to that degree, even though he has a laundry list. They're all managed, and he's a healthy child, in spite of them. It's really, you know, yeah, we don't know what their diabetes is progression or not. Bryson, we've never found the gene that's causing the mitochondrial dysfunction. And so therefore, we don't have a path and we don't have anyone else to say, oh, you know, these are the organs that we have to protect because he has, you know, lays disease and it may be, you know, its brain and this is how it progresses. And we don't have any of that information. So we just go along, hoping.

Scott Benner 14:52
Do you just you just Yeah, every day. What conjugal disease is a genetic disorder, right? Is there a Anyone else in the family that has it?

Cheryl 15:03
No, no. There was not. It may be that they, they have done studies on his parents, and they haven't really found a gene that they both had. And that Bryson has, it can be a mutation in within himself. And that's what they're thinking, since they haven't really pick up on any genes, known variances. So right now, he's kind of an unknown. And that that in a way makes it you don't want to have a one to two B diagnosis. It's one of the severe sides of mitochondrial, but then again, we're on land and the unknown. And we don't know what to expect,

Scott Benner 15:47
do you have a number for how many different issues he has as a diagnosis?

Cheryl 15:52
If I had all of his diagnoses, like ADHD and everything, he has about 12 or 12 diagnoses?

Scott Benner 16:02
Which is a strange question, maybe, but which one of them presents you the most trouble day to day?

Cheryl 16:08
Now? That's a very good question. Actually, it's as autism on a day to day function. It is autism, keeping him to be able to actually talk and communicate he wants to and he is horrible. But he has a hard time processing, processing the words and getting them out in the order. He knows everything about diabetes, but if he like he was going to talk to his teacher about it. And so we were talking and he's like, Oh, that's a lot of words that I have to say. And so that's how he thinks he knows he has trouble really, you know, process and then it presenting it. So autism on a day in and day out basis. As far as his quality of life and what he sees, it would definitely be autism.

Scott Benner 16:58
Okay. And for you, is it the same.

Cheryl 17:03
Now for my it's the number one is is diabetes, but calm, because, you know, he's going through puberty, we had such a good handle. When he was diagnosed, he was like 11.7, as I once say, when out three months after he was diagnosed, it was 5.9. Okay, with 97% in range. And that was only because of this podcast, because I found it in the hospital. And so being an industrial engineer, I did a lot of research. And my main job was to look at something, analyze that and make improvements. And so here's my grandchild. And he has all these variables and everything. And they tell me about them, and they don't want to overwhelm me, and I'm, like, overwhelmed me, I have to have this knowledge. And it was the podcast that gave me the knowledge. So he came. I mean, we came home, and I was listening to every episode that you guys have, and it allowed him to get to 5.9 and 95. His last a one C was 5.3 with 95% and range, and a standard deviation of 22.

Scott Benner 18:28
Come on. That's amazing. Good for you.

Cheryl 18:32
yourself on the back, Scott.

Scott Benner 18:34
I thought you're, I'm being honest with you. I thought you were gonna say he was honeymooning when you told me the first day once Yeah, I didn't expect you to say the podcast was helpful. What's your range?

Cheryl 18:42
No, he's not honeymooning, he came out. He came out of his honeymoon and he's been out for he was probably only in honeymoon maybe the first three months. And he's it was very obvious when he came out. And luckily we got the pod on the pod about the same time he gave came out, man. He was still in honeymoon when he got the Omnipod

Scott Benner 19:07
okay. Hey, so with a 22? Is that what you said? Your your timing ranges 95%. Your standard deviation and standard deviation is 22. Yes. What range? Are you shooting for like 70 to 120? Yes. Is that right that I get it right?

Cheryl 19:26
Yeah. About that? Yes. We don't ever panic if he's, he can hang out at 7977. You know, we don't panic. We we know he we know how to get him up. His body responds very well. He has no idea. He cannot tell lows. He cannot tell highs. We can't tell any difference in the way he acts with lows that you can like pies. He gets irritable when he gets very tired. But

Scott Benner 19:56
I have a question that this might take a turn that you're not expecting but Between your background and your situation and your age, you're you're doing an amazing job. So thank you. No, I mean, honestly, this is, I mean, that'd be hard to argue with. I think that's a pretty obvious statement. My question is diabetes specific. What did you take out of this podcast that you were able to put into practice? Like, explain to some, somebody else who just heard you say that and thought, Oh, great. I'm in my 30s, my kid doesn't have autism or any of these other problems. I'm nowhere near these numbers. Like, why is it? What is it about you and the information that blended so well together? Do you see the intersection? Do you know what it is?

Cheryl 20:46
I know a lot of it is my background. And even when I was in the emergency room, I was hearing bits and pieces of everything. And I was putting it together and learn why do you ever medical Brett Graham? And I said, No, I don't, I'm just putting pieces together. And my brain. Fortunately, for diabetes, that's how it works, it looks at things and it automatically takes information and stores it and puts it in kind of what I perceive to be a logical order. And so that's how your podcast is, it's very to me, in my way of thinking, it is very logical. And it was very soothing for me to be able to go on a pod pass and hear about how to deal with protein and how to deal about, you know, deal with fat. And so I knew, so it was no longer scared. And I was no longer wondering about you know, about the spikes, or going in and hearing someone's story, and I can relate to it. And I'm like, oh, okay, you know, and even if it's someone's story, like someone's listening to mine, and it isn't there a path, but they still might learn something for or it's interesting to know that you're not alone. And that even though everyone might be on a different path, we're still on the same journey.

Scott Benner 22:04
I'm stunned that I'm logical.

Cheryl 22:07
Oh, you're very logical. I perceive you to be very logical, I perceive most of your guests to present themselves in a manner that was very helpful for me.

Scott Benner 22:20
Yeah, their guests are terrific. Always. And, yeah, it's just those these conversations are so valuable. But I mean, I'm joking a little bit. I believe that I'm very logical about diabetes, and how to manage it like moment to moment, day by day. It's just that if you could see the rest of my personality, it doesn't really jive with that, you know. So it's sometimes I think of Mike, I don't think of myself, like you do. I see myself because I see myself in a completely different way. Like, if I got on here and really started saying what I was thinking, in 15 minutes, you'd be like, I think this guy's out of his mind. But I just, I see very strange connections to things and, and I like to joke about ridiculous stuff. And I don't know why I'm, I'm I don't, I'm just thrilled. I seriously I'm listening to what, what Bryson's life has been and, and you know, then you get, I mean, he gets diabetes, you must have been like, Are you kidding me? Right? Like, I mean, you gotta go in a room, put a fist through a wall or something then right?

Cheryl 23:22
I could not. Now, my husband is diabetic type two, and has been for 20 years. Bryson had been over his parents, and for the weekend, and they told me that he wasn't feeling well. And so he came home, and on the Saturday on a Sunday, and that night, he went, he has his own little refrigerator, and I was visually impaired and everything he has is in there and, you know, arranged specifically for him. And he was out of drinks. And he went in all hours and was getting in during the night and drank four liters of drinks. And his father had been listening to a rap song that started with week get drunk. And so, Bryson they noticed he was drinking a lot. And he told them, they had explained what drunk was he they just said, People drink tonight. So he told them, he was going to get drunk. And so he was drinking all this fluid, but saying he was doing what the song said and getting drunk. So you know, they got a kick out of it. And actually, that Monday, he had an appointment with his behaviorist for his autism. And it was on it was on Zoom because of COVID. And we were talking about him drinking. And, and, you know, his doctor was kind of laughing, you know, because he was drinking a lot because he wanted to get drunk, but he has no concept of drunk eels. He just knew you had to drink a lot. had to get this whatever drunk was. And so I'm like, okay, okay. And then he started throwing up. And I call this doctor and she said, there's two different stomach flu stomach virus is going around. Well, because of Bryson's mitochondrial he easily hydrates. And so his whole life, if he has long periods where he is is throwing up, then he has to go into the hospital for fluids. So I told the doctor 100 up and he was still throwing up, and he was still thirsty. And I'm like, You're gonna throw it up. And he's like, I don't care. My body says, I have to don't mind you, I still never thought of diabetes. So I called the doctor back and I said, he's still sick to the stomach, you know, call Vanderbilt. That's where we go Vanderbilt children's and it's the top hospital in the southeast, we're so fortunate to have it. So they open, you know, they called and said they were on their way. He was able to walk to the car by himself. If he's in familiar settings, he he doesn't need any help navigating. So he made himself to the car, by the time we got halfway to Vanderbilt is about 15 minutes away. He said, I can't keep my seatbelt on everything, all my body hurts. And he was like in the floorboard with his head on the seat. So I turn on the flash or you go there. And he lost consciousness by the time we got there. And, you know, the nurses came, and they had everyone in the emergency room. And they said, Is this sugar always high? And I might do what and it was, their monitor was like, over 700 At that time, and you know, some of the nurses were logging in, and the doctors, I mean, they came up and they were like putting their hands on, you know, Army and saying, you know, we know, this is a lot. We know, you know, he has a lot and because if you just look at the list, you don't know how that child is going to present. So they saw Bryson lane, they're not cognitively aware. And they were like, Is this his normal state? And I'm like, No, but you know, epileptic, especially if it's uncontrolled with his he's, you know, topped out on three seizure medicines. And that can cause severe brain damage mitochondrial can cause severe brain damage. So, you know, they they're, they're politely asking, Is this how we always see as and as we turn them normal? No. And so they're keep on asking me this. And I finally thought, I'm going to show them my phone, because my screensaver is a picture of him when he got his new phone. And he's just beaming. And you can look, and you can tell by looking at the picture, he looks like a typical 14 year old. Which when the pitcher was typing, and I'm like, This is him. And you could just say, oh, and so they're, you know, they went in and was talking now he's, you know, he's always horrible. And

so, yeah, I had, we had no idea was coming. I asked how he was severity. And they said he's an eight out of a 10. And they were given ready to give him and I think it was called a hyperbolic solution. And they said, he's an add on for 10. And we'll know exactly which way he's going to go when we give this to him. You know, and it's not like the movies where they just push you out. And you don't see all of this. I mean, I sat there and watched and go in and out of consciousness and there was no washering there was no, you know, standing there. And they gave him the solution. And it just makes him he just came up gasping and that lasted for like two minutes, and then he like back down. But that's all they needed to see was just that two minutes of him being aware for them to know that he was probably going to decrease from our seven at some point as opposed to go into a nine or TM

Scott Benner 29:13
and that and then that affected how they helped him next.

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Cheryl 32:37
well, they they were because of the mitochondrial disease they had they slowed down everything they were going to do the dka I didn't even know that what that was they were telling me we're doing DKA. And I hear them talking about DK and I'm like, I have no idea. You know what that is. And then they stopped the protocol because of his monitor contrail dysfunction. They called the geneticists, and reviewed everything they were doing with his geneticists, to ensure that their protocol was not going against his mitochondrial protocol, which he also has. So usually, when he presents in the hospital, you know, they treat the child for the symptoms. And as they did with the diabetes, that there's also like, he can have lactated ringers, and that's something that's often automatically given to people, and he cannot have those. So they have to follow the mitochondrial protocol. First, and then the diabetes. So, you know, while he was in this perilous state, they were stabilizing him, but at the same time trying to figure out his course of action, where the diabetes and the mitochondrial dysfunction could both be treated effectively without one negatively impacting the other. Yeah.

Scott Benner 34:00
Oh, my gosh, you're by yourself in there with them. While this is happening. How long were you there? Like how long did all this take?

Cheryl 34:07
In the emergency room, they, once they found the protocol, we went from the emergency room to have they did a lot of things in the emergency room. We were there were a total of five days, three of which he spent in ICU. And so yeah, we were there five days and yes, because of COVID It was only it was only me. Now my sisters did come to see me once in the parking lot. And, you know, that's probably the hardest I've ever cry. I was say I had such a fear because of his autism that he would get home in would not allow us to prick his finger and would not allow us to give him an injection. And that was such Fear of mind that he would in cognitively he would not be able to understand why. Why I was trying to do this and he, you know, was 14 when he was diagnosed, he was way too big for us to hold down. So if he said there's no nerves and no injection, there wasn't going to be any injection. So that was my biggest fear. And it was just one more thing of a his laundry list.

Scott Benner 35:26
Yeah, no cheese. No kidding. Has it been an issue ever? Or how did you get him to be okay with all this because he's wearing a CGM. I mean, you don't, right, I just want a CGM and a pump.

Cheryl 35:39
Exactly. He was so sick. That he has since the add on to me for not calling a name. Because he said I was too sick, you should have called an ambulance. So even though he didn't, he doesn't understand the true severity of how sick he was. He knew how sick he was, you know, he knew he had never felt that way. And he knew he never wanted to feel that way again. And Vanderbilt has a fantastic tava life. And so they worked with him a lot. The nurses that were diabetic, type one diabetes came in and would talk to him, you know, when they were on shift, even if they weren't his nurse and said, Oh, I do this, and this is what I do. So by the time he left, he was used to the injections. He was pricking his finger has never bothered him. So he was used to that he was used to the interactions. And you know, basically, it was like, Bryson, we have to do this, or you're gonna get sick again. And he's like, I don't ever want to be that sick. So he was aware enough to know that he had to have this. And he still asked, when the doctors are going to his his pancreas, he's still hoping for cure just like everyone else's. You know, he doesn't want diabetes, but he's very, very compliant, and always has been, I think, if he had to go back to injections, we would have some resistance, because the pod is just so easy. And so life changing. It made our life so much easier to ask a question.

Scott Benner 37:22
So he's, he's, he's asked me about, like, you know, can diabetes go away? But the rest of the rest of the stuff that's going on with him, you said that he doesn't see himself as different. So he doesn't ask about any of the other stuff. He's never asked about any of the other issues?

Cheryl 37:40
No, yeah, only thing they only thing that he is upset about is he cannot drive. But not only is he visually impaired and couldn't drive his epilepsy, they just did an EEG. Because he started presenting with different kinds of seizures other than just absent. And he that came back, you know, that he was prohibited from driving. So you know, he has two conditions that he couldn't drive anyway. But he wants to drive. And we just had that discussion. And we've had it a couple of times that, you know, he just can't see well enough to drive and not to worry, well, if he ever wants to go anywhere, or take him and we're Oregon, always going to take him. But unfortunately, he's not going to be able to drive in there's intellectually intellectual ability, but on a day to day other than driving. He has no idea. And as a matter of fact, when I was his school is fantastic. And they actually called Omni potty in to do a presentation showed them how to fill the Omni pod. And when the representative had finished training the school because they have a full blown clinic because they have the residential program. So we're fortunate there. And when when the representative was late leaving, she told them she said, if you really want to know about diabetes, listen to Juicebox Podcast. But that wasn't on that was yeah, that was the Omni pod representative. So they've always been on board. We had a big meeting before school started before we ever walked in. And it was all the teachers that he was, you know, gym teacher, speech teacher, everybody was there. And they were talking about what he could have ate and I said he can have anything to eat anything he wants. You just have to cover it. And

Scott Benner 39:46
what's his diet like?

Cheryl 39:49
That is another thing that that's another thing that's really changed for the better since diabetes. Because before he had a very limited diet very limited, I mean, you know, he would eight, maybe 10 foods and now he will eat anything just about that's put in front of him. He doesn't like coleslaw, but he will eat any kind of vegetable broccoli, cauliflower, anything and put in front of them, he will eat now. And that changed because of the diabetes because you know, we said your body has to stay healthy. And you know, we you have to eat healthy in order for your body to be able to work healthy. So once again, as sick as he was was the one thing that helped him with his even with his Stiltz abilities to understand how serious diabetes could be

Scott Benner 40:50
that TK had a real impact on him. He's not Oh, yeah, he's not going to forget that anytime soon. And it's it's interesting, isn't it? Because that's the what I want to say here. That's the reaction you would expect from everyone. But because he's not encumbered by the other, like some of the other things that that a person, maybe without his issues is unencumbered by like, like, just simple things like his own personal desire, right? Like, he doesn't think about like, I just want to be happy, you know, or I want a pizza he he's gets this feeling of like this hurt. I'm not going to do this anymore than he doesn't question again. Is that right?

Cheryl 41:36
You're exactly right. And the thing is Bryson does not express pain. He has passed a kidney stone we've never known. I don't again, I referred earlier, earlier that he had a broken bone. He never told us that his foot hurt. I noticed he was limping. But he's he promised nothing to hurt on is that I take him to the doctor.

Scott Benner 41:58
Is that the high blood pressure? Or Is that him just being resilient? What do you think that is?

Cheryl 42:03
I think a lot of it is I think his body is in pain, because of the hypertonia. And the muscles. I think he has, you know, some pain. Not on a high level. But I think he's used to dealing with pain, and his autism disallows him from once again, really processing what's going on. He has migraines, and he'll tell you he has a migraine. But other than that he won't he doesn't acknowledge pain. It's scary. That's yeah. Yeah, that is scary. But he he realized how sick he was. With the diabetes with the diabetes. He couldn't express. He couldn't express how we felt us. But he knew how he felt.

Scott Benner 42:49
Yeah. Does he have a? Have they ever talked to you about his lifespan? What the hope is for him?

Cheryl 42:59
Well, that's why when he was diabetic, once I got over the shock, my first question to everyone was, Is this the progression of the mitochondrial disease? Because mitochondrial can affect any organ in the body and cause, you know, a dysfunction? And and they were not sure. And once again, that's because we haven't found the gene. So we don't know, the path that his body's going to take. So we don't know if this is progression, or if it is just he's diabetic. Okay, all right. And the life expectancy we don't know. But, you know, 5.9 5.3, I'm going to do and his parents are committed, and my husband, everyone who controls his diabetes, they keep him in range, because we cannot control anything with him with his with all of his disabilities, there's really nothing we can do. We can try to give him therapies and supports the we can't really physically do anything to help him. But now the diabetes we can. And so my gold is in and fit when he's 50 or 60. For him to never be in a position where the diabetes, something that we could control, cause any complications. But there's crossovers from the complications because mitochondrial your stomach takes a lot of intestines. They they take a lot of energy. And so you know, Gastro paralysis is very common in my dough, but it is in diabetes, too. So if something like that happened, it would have be a result of the mitochondrial or you know, or what advancement of Maido or advancement have a complication of diabetes. So whenever anything happens to him, like if he were to have a seizure before it was and we're not talking about the absence seizures, we'll talk about that. tonic clonic what everyone classically thinks of as a seizure? When he has one of those? Now, it's like, is it that combine, you know, is just just a seizure? Which is what we thought before? Or is he's low in his Dexcom? Showing, you know, 79. But he's really lower than that. Yeah. Because we don't know if this Thresh hole, you know, we don't know if his threshold is going to be the same as a diabetic because he's already epileptic. So that's an unknown variable. And so there are things that now when something happens, we can't just look at what we did this that one diagnosis, now we have to also look how diabetes could have affected it. And so you know, you just have to go down like this little tree to find out, and you can't really check a child's blood when they're seizing,

Scott Benner 46:00
right? Yes, you just what do you do you assume it's the seizure disorder first, if it's, if the aim is, is reading well, okay, I have a couple of more like psychological questions for you. So my first one is, Does having something like diabetes that's more manageable, like, like, cause and effect management? Does it make you feel? Does it make you feel better? Because I hear in your hearing your statements, that you think a lot about what's coming? And what could come and you don't feel like you can stave off any of the other problems? They're going to just progress if they're going to progress? So do you get any comfort from managing the diabetes?

Cheryl 46:46
Wish with everything that he didn't have it? And but yeah, I do get comfort of the control because his epileptic is intractable, which means they never don't never get it under control. We know that his seizures are progressing and presenting in different ways, which, I'm pretty sure he's going to be diagnosed in the next couple of weeks when he goes back to the neurologist with a epileptic disease. And, yeah, I I'm one that likes to control things, especially with someone that you love so much. And so I do find comfort in the fact that this is the one thing I can do for him that medically I can have a positive impact.

Scott Benner 47:42
Sure. Are you at all impressed with the intuitive nature of my question? Because I am

Cheryl 47:47
Oh, yeah. Yeah, no, all of them, all of them, because you're asking the right questions or asking the things, you know, that that are wanted to, to do, but you're going back to what I was saying about him not knowing anything, and when I was talking to his school, and she said, Okay, so at breakfast, this was his teacher, she was like, okay, at breakfast, if they do a math, and we just won't give them a muffin. And I'm like, you know, the child always comes before diabetes. And he doesn't know anything else that he's missing out on in his life, he has no clue, but he knows is missing out on the muffin. So given the muffin, give him anything, treat him like anyone else cover the carbs. But he knows that he's missing out on the map. And then it was just like a metaphor for just like everything. That's how it felt like when I was saying that it was more than just the muffin. It was just for everything else that was thrown at him. Do everything you can to make him His life as normal as possible.

Scott Benner 48:54
You sort of get that feeling sometimes, like you know what, I've made a lot of concessions. And I'm, that's it like I'm done making concessions. So we're gonna figure out another way around this issue and it whether it's eating the muffin or something else. You just get to that, like, you know, I've I've had all I can stand that I can't stand no more. And that's it. We're going to we're going to make a stand right here. We're going to we're going to say, figured out you figured out how to Bolus from off and obviously you've amazing standard deviation and agency and time and range. How did you figure it out? Just this was the

Cheryl 49:27
school but it has to do that. Really? Yes, the school is the school. Like I said they are very, they called the Omni pod representative. Within the first the second day of school, they had gone through all of their menus and wrote down the carbs per serving. They had even gotten to the point and this is the school that had even gotten to the point where there were different brands that say care It's, and they had different carbs. And so at every day, they call and say, Okay, you're having carrots, which brand of carrots are you serving at lunch? And so as you can tell, I am so blessed that that's where he is. And if there was any question there forever, you know, calling and saying, you know, this is where he is. And you know, what do you want to do? So I have a very good relationship with the school. And so they're the ones who figured that out. He is running higher at school, like at lunch, they do have at the Bolus before and the other half after. And so there was not the Pre-Bolus. So he goes, Hi. i During lunch easily,

Scott Benner 50:45
did he show a propensity for not finishing his food? Is that why they did that?

Cheryl 50:51
They weren't really sure. But now his thing is, he used to eat more than they say, you know, it's not uncommon for him to eat two lunches. And if you saw him, he's five, six and a half and 107 pounds, so he's extremely thin. But he eats,

Scott Benner 51:10
well, maybe, maybe they can get past that idea and just give him all the insulin at once, instead of splitting it before and after, like, maybe a time Sorry, go on. No, no, I didn't mean to cut you off. But maybe with time, they can get comfortable.

Cheryl 51:25
And that's what I'm hoping I'm hoping at least that they can Bolus for the full lunch. Because I would rather say them Bolus for 50 carbs or, you know, however many. And if he eats 40, then give him you know, a couple of sips of juice, give him something to cover it other than just letting him go to 200. Because there's not really a Pre-Bolus. And the ins, you know, all the foods hitting before the insulin is that they they understand it. You know, I explained exactly how, you know, how it went, how it proceeded. But that's just their comfort. And I know a lot of schools, that's the only issue I have with them is that they won't Bolus Pre-Bolus him his full carb camp for lunch.

Scott Benner 52:14
And you do it at home. You don't have any trouble with it.

Cheryl 52:17
Yes, yes, we pro Pre-Bolus. He's going through puberty, as I said, and we're finding this week that everything that we thought we knew, he's still spiking on. So I'm in the process of reevaluating his Bolus. And then looking if we need to do something else with collaborations.

Scott Benner 52:43
Can I ask question, I'm

Cheryl 52:44
doing the basil first. Not the bonus. The basil. I'm doing the basil first.

Scott Benner 52:48
I have a question. It's completely away from all of this. So can you just mentioned that he's, he's, you know, coming up on puberty? What do you what do you do when he starts having, like sexual desires? I know he's known. But have you had to have thought of this? Like, what do you? How do you handle that?

Cheryl 53:08
Well, we, it's already presented itself. And especially when he pre diagnosis, he was getting erections constantly, much more than I thought was normal. And once once we got his blood sugar under control that that decreased, like 80%, which is a aside from what you asked, but just I thought very interesting. But now we've we've just told him, this is why your body's you know, this is what's going on with your body. He has, he doesn't know what to do to satisfy himself. He hasn't discovered that yet. But we just talked in general terms that were pretty specific, as far as he wanted to know that if that happened to everyone, and it was going to continue to happen. And, you know, you couldn't touch yourself in public once again, you know, I started, you know, saying that he has no modesty. So, you know, you could not touch yourself in public. Try to say when this happens, you know, put your hands or you know, trying to do things because those he needs to be typical, like any 15 year old and in a part of it is just his dignity. And so we've we've touched upon it, and he's done really. He's done really similarly. Well. That's excellent.

Scott Benner 54:47
So far. Yeah. And by his dignity, you just mean like how how people see him like you don't want him to come off, like out of control. Is that right?

Cheryl 54:59
I don't know. Once you felt, you know, I don't want him walking around with an erection in him ever been, you know, one, one teenager nudge another and then saying and look at him and bars and be totally unaware because he is unaware. So it's just like, you know, that happens to everybody just kind of put your hand in there. And so that to him, that's just part of having good manners to him. That was just like saying, Please, and thank you because he doesn't understand anything about sex or any kind of sexual and we didn't go into that we didn't go into why that part of your body, because unfortunately, that's going to be another part of his life that won't ever be utilized or that he'll ever have. Or we don't foresee that. And so we didn't go into details. It was just more the good habits of it.

Scott Benner 55:53
Okay. That's just wondering because I imagined you'd thought it through. Shall there's a part of me that imagines that you've thought everything through. So

Cheryl 56:01
as much as possible, you know, he's 15 years old and has to go in the women's restaurant.

Scott Benner 56:05
No, I mean, beyond that, Cheryl, like, if you find a genie lamp, you know, your, you know, your wishes already. Like, have you like, What haven't you thought through is what I'm saying? Like, if you find a lamp on the beach, and you rub it, the genie comes out? Do you already know what you're gonna ask the genie for? Have you thought through that? What happens if there's a fire? What window? Do you go out? Like, I feel like you've got everything?

Cheryl 56:25
Yeah. Yeah, all that. We have fire drills with Bryson forever. for just that reason, if we're on one end of the house, and he's on the other because he is able to, you know, as I just said, he mobile, you know, he's totally mobile in our house, they can go and do anything is totally free to do whatever he wants. So for year, one and a half, and he's in the other and the fire alarm goes off, what is the closest door because that's not something that he is going to automatically think he is not going to think, oh, I need to go out the front door. So that's what we do. You know, we've actually set the alarm and had you know, drills just like they do at schools and say, okay, the fires in the kitchen, which door? Are you going out? The fires in the garage? Where are you going? You know, and you know, the fires in the living room? Where are you going? So we do those scenarios, so that he can it will be automatic to him.

Scott Benner 57:21
I think I want you taking care of me what's for dinner tonight?

Cheryl 57:25
All right, already. That's that's a downfall. Okay. You know, that's what my husband wouldn't say I was a trophy wife. Because he you would have to ask him what was for dinner? Because he actually does more cooking than I

Scott Benner 57:39
thought. I thought you had the whole thing set up here. No, I

Cheryl 57:43
don't. I'm not the whole package. 99% As long as you don't expect a chef. Oh, that's

Scott Benner 57:49
excellent. Oh, my gosh. Before we started to record, you kind of you you said you were like excited to meet me. And I have a hard time understanding that. So because you're such a together thoughtful person. Can you explain it to me because I don't understand. I'm being genuinely serious. I don't know why anyone would come on here and be excited.

Cheryl 58:15
Okay, you know, start dismay, shock even more, but I am tearing up. Because to sit in a hospital room with a child who's already some medically fragile and have diabetes thrown at you. And you just feel like this is one more thing that can't be controlled. And then you Google diabetes. And you start listening, you visit different pages, and you start listening. And finally you hear a voice that to you is a voice of reason to you. It's a voice that you can follow. And so I went from feeling totally out of control and in panic, that I was going to take this child home, not even knowing how to take care of him. I knew I could. And that wasn't anything that they told me. That came from the pipe house. I came home and immediately I mean, that's why I spent my time in the hospital was listening to your podcast, and it gave me comfort. And that was from you. So as as I said I live in Nashville, I ran into quite a few you know, country music stores. And and I'm like, Oh, there they are. That's great, great. But I'm like oh my gosh, I am going on the Juicebox Podcast and I am going to talk to Scott. And maybe just maybe someone will be sitting in a hotel room and you will give them through your Odd cast comfort, and you will give them hope. And you will give them a sense of control that had been ripped out from underneath me. I thought I knew how to take care of him. And then I found out I didn't. And you taught me how to again. And it wasn't any. I mean, Vanderbilt has a great program, they have a clinic, but they're not the ones who taught me how to take care of boys. And that was you. And yeah, so yeah, when I said I was a band girl, or a fan woman, I guess I should say, since I've already told you my age. So yeah, I'm definitely a fan woman, and I'm definitely you just, you just don't know how much your voice has meant to me. And now it's pulled me up.

Scott Benner 1:00:50
Thank you. I, I honestly don't know what to say. I feel like anything I say would be ridiculous. So I'm just gonna say thank you. I'm incredibly happy that that worked out for you that way. And I do agree that you being on the show will be someone else's episode that they that they land on when they're in the hospital or unsure our whatever moment of need. strikes them. How about your I know you're not? Listen, I'm not trying to paint you as like, like 150 years old, but I don't think 62 year old.

Cheryl 1:01:26
Thank you so much. I may not be your fan if you if you hold that steady state.

Scott Benner 1:01:33
No, I'm just trying to get to the idea that I don't think that 62 is the average age of a podcast listener. Did you listen to podcasts prior to that?

Cheryl 1:01:44
No, no, yours was. I had that. I mean, I am active on social media, Instagram, Facebook. I don't post a lot. I follow a lot. So I follow podcasts. I mentioned to therapy dogs and Crisis Response canines. So the podcast and things that I followed. Were 100% directed towards that if every podcast I listened to was that, so I did not listen to medical podcast. That wasn't a point of interest. I never would have found your podcast or any other medical podcasts and yours. Yours is the only podcast I listened to because I found out really, really quickly that you spoke my language you presented information in a way that made sense to me. So I discounted the the other podcasts.

Scott Benner 1:02:48
Can I want to dig into that for a second? And not I'm not trying to I'm not trying to make a funny statement. But it? Did you try a number of them. And mine fit you the best or did you try mine? It fit well. So you didn't go look at the rest of them?

Cheryl 1:03:03
No, I you know, I did. I did several women and of course we're not going to name them but I did you know I did snapper all the Facebook's you know. And some of them I still do on Facebook. But your was the only podcast once again because you spoke my language. And it wasn't not that the others are fluff but they were fluffier. And I didn't want fluff. diabetes is not a fluffy to me. It's not fluffy. There's no fluffiness about it, you know, give me the cold, hard facts. And if they're bad, then I want to know them. You know, because my mind is automatically gonna say it's bad. What can I do to make it better? And so I fit very well in your in your podcast, and in my mind. Yeah, that's just how I think and the others were too, too general, too. I couldn't get anything. I couldn't get anything useful on how to care for ball. I said not the nuts and bolts of how to care for Bryson and your podcast has nuts and bolts.

Scott Benner 1:04:07
Oh, that's excellent. I I guess I'm extra interested because yesterday, a fan of the show sent me something they saw online where a person said that they didn't think this podcast was good for newly diagnosed people. It called me a micromanager and I read the little blurb and I thought I don't I don't think those are accurate statements about me. But I think in general, I think the podcast is great for people who are newly diagnosed for the reasons that you just said, because why spend a bunch of time hearing stuff that's not going to be helpful or isn't complete information. And I don't see I mean, it's 141 I think maybe two hours ago I said to Arden, like you should Bolus more, but I don't talk about our diabetes a lot with her at all really? You know, so I mean and over the years it's been done Finish. She's been younger. But I also don't understand when people think that you, I don't know if it's micromanaging to, you know, help a kid Bolus for a meal and then check in on it to make sure that you hit the Bolus, right. And you're not spiking, like, is that micromanaging? Or is that just reasonable use of the insulin? So

Cheryl 1:05:17
I think that's teaching. I think that is teaching. I think that as a parent who wants their child to be successful when they leave the house, and are given them the tools to let them be successful, I don't see it micromanaging. Bryson would never we'll never be able to manage his diabetes. And so we never have to do with the teenager inks where they, you know, aren't bolusing other aren't taking, you know, corrected the correct measures to keep the numbers in control. But I can guarantee you, I would be like you, I would be micromanaging. Because, like I said, I don't see that micromanaging. I think that teaching good life skills. And that's, that's how I view.

Scott Benner 1:06:00
Yeah, I think that sometimes people's first reactions are not always right. But that doesn't stop them from never reevaluating what they're saying, you know, I think that you could hear me say that I, you know, Tech Stars, and hey, Bolus a half a unit in the middle of the day, and think that's micromanaging. But you know, there's a world where the way I think about it is, if she doesn't get the one ad during the day and sit there for three hours, then we won't be bolusing Bolus and bolusing later in the day, and then causing a low at 11 o'clock at night. And like I see it as a more holistic big picture. And anyway, I was just very faint. Thank you. Yeah.

Cheryl 1:06:44
That's why the podcast is so good, because that's exactly how I think you know, that's, that's what I do. You know, this budget nudge. I'm all about budgeting and nudging.

Scott Benner 1:06:54
Also, I'm delightful, right? Yes.

Cheryl 1:06:58
Cheryl, do you like to call me an old lady then? Yes. I'm not gonna call me an old lady than your delight

Scott Benner 1:07:03
department in the episode where people are like, Oh, what is he going to end up calling my episode?

What? Do you like my sense of humor? Or do you just like the way I talk about diabetes?

Cheryl 1:07:16
Oh, no, I like your sense of humor. Okay. I mean, I find everything very entertaining. You know, I was nervous about coming on. But it's because I had, it meant so much to me.

Scott Benner 1:07:27
My expectation was this, don't you? Like you want this? Yeah,

Cheryl 1:07:31
yeah. And I have you've asked the right questions. And I've been able to say what I've wanted to say. But it was just that I could present myself in such a manner that I would help someone. But you've put me very much at ease. But no, I was never nervous about speaking to you, as much as I was just getting the information across.

Scott Benner 1:07:54
Well, you did. You were excellent. I we've been talking for an hour and 15 minutes.

Cheryl 1:08:00
Okay. Let's start talking.

Scott Benner 1:08:03
Oh, you are chatty. I could have left a couple of times. But, but I but you also know me if you weren't. If your what you were saying was invaluable. And entertaining. I would have interjected. And so and so I love the way you laid this all out. I thought it was terrific.

Cheryl 1:08:21
Okay, well, good. Yeah. I also think we're fans of each other. Right? Well, yeah.

Scott Benner 1:08:25
I also think this shows a little bit of growth on my part over the last couple of years, because you know, I would have not like I would have talked more a couple of years ago. And I'm getting I'm getting better at listening. So yes, I'm getting better. You're

Cheryl 1:08:37
right. Yeah, you're right. There were times Yeah. Yeah. at the, at the first there were times where people were saying something. And I'm like, wait, you know, there may have been a little more nugget there. Yep.

Scott Benner 1:08:47
I'm starting to be able to quiet the little voice in my head. That's that says keep it interesting. Move on. And, and I'm willing to listen for another 30 seconds. But I have to tell you, when it happens, and nothing comes in those 30 seconds. I'm like, oh, I should have should have moved on. But yeah,

Cheryl 1:09:07
yeah, it's just yeah, I can. Yeah, I can. I can totally, I can totally understand, for

Scott Benner 1:09:13
sure. Because of, you know, a lot of the things you said today make my point. But I am aware of how valuable the podcast is for people's health, and their sanity and all that other stuff. But I'm also acutely aware that if this isn't entertaining, no one's going to listen to it. So it could have the secrets to the universe and it but if it was boring, you might you're not gonna make it through it. And so I'm always trying to balance Listen, ability with content so that you get what you need. And don't bail on something before the good things get set. And you know, that just, it's just true. Like I know it sounds crazy, but you could put the secret to life in this podcast and if 45 minutes into it, you're bored you'll you're just not going to make it and So you kind of have to that's all. I just,

Cheryl 1:10:04
I mean, you're you're exactly why didn't you are entertaining? Um, you know?

Scott Benner 1:10:08
Yeah. Like, what's his name in his prime? That guy with a dance with the umbrella? Yeah, I'll never think of that. Dammit. You're like, I'm not even I'd love to know who you're talking about. The City and the ring guy. Who am I talking about? Oh, God. I don't know what hold on Jesus. I'll figure it out. Well, I figured it figured out I guess if I can remember how to spell saying I'll be okay. I was gonna bother me because as soon as I see gene Kelly's name, I'm gonna know I mentioned Kelly dammit, Gene Kelly. That's all I did I reach back to the 50s the thing I was born to literally seven days.

Cheryl 1:10:49
Okay, well, and and I will let you know that I did say the last two years of the 50s. But I didn't I wasn't old enough to watch when Jane Kelly and Auburn hit.

Scott Benner 1:11:02
I have it right here now. Jean Kelly. Donald O'Connor Debbie Reynolds.

Cheryl 1:11:10
Oh, Debbie Reynolds. Yeah. Yeah. That's, that's too far back for me.

Scott Benner 1:11:15
You know, your episode could be called singing in the rain. There could be because you're really upbeat person. And this is not an upbeat situation. So,

Cheryl 1:11:26
no, it's not. And you know, everyone has their their moments. But

Scott Benner 1:11:31
what do you do in those moments? Cheryl? When it's too much, what do you do?

Cheryl 1:11:37
I'm not really a crier. I have two, if I'm totally one of them. I read. But, and you know, it depends on what it is. If it's like his seizures, and they're and they're, you know, getting new seizures. There's not a lot I can do. So I just like the mine and Gaston and that's what I'm pretty sure is going to be diagnosed with as a seizure disorder. And it's just learning everything I can about it, but I can't do anything about it. So when I'm really down there, it's to seek information and then realize there's nothing I can do about it. And I just have to resolve that within myself. Because that's probably my what bothers me the most is when something presents itself, and it's progressing like it seizures are in there's, there's nothing that can be done, you know, the teacher, the doctors are scrambling to add medications and change doses times. And so that's, that's probably my dark place is when I can't control it. So I just have to resolve that. And myself, I hate not being there's nothing else I can do.

Scott Benner 1:13:05
No, I agree with you. I think it's a smart thing. My mom is sick right now. And it's the worst part of it is not being able to, I feel like I want to continually be able to say something that's valuable, or do something that's valuable, move it in a good direction, even if the end is not good. I want to I want to keep moving in a good direction. And I got a little for the first couple of weeks she was that we were aware of it. I had a lot of I don't know if it was anxiety, I was stressed out like I couldn't, my body was under stress. And I could tell and I said to Kelly one day I was like I said this is going to kill me before it kills my mom. So I have, like, I have to find a way. And I think that you're right, like I mean, people can say like I exercise or I read or I cry like those are all great things. But in the end, it's the letting go. And it's not it's not giving up. It's it's not holding yourself responsible for something that you can't be in control of that sound right

Cheryl 1:14:13
now, and that's that's exactly that's exactly how it is. And that's where my anxiety or my my moments come from is when I can't control it. But then you just have to realize that as much as you want to control something you cannot there's nothing you can do. And you know, I can try to say, okay, he was doing this when they see your happened and like one of them we had lost the we had to put one of his dogs down and he had a really bad seizure afterwards. And I'm like, okay, so does that equal, you know, huge emotional impact is going to equal a seizure. Now, I don't know, but I kind of, you know, put that in the back of my thought. So I try to control as much as I can. But at the end of the day, there's nothing I can control. All I can do is gather data for seizures. I cannot control them and that's very, very hard.

Scott Benner 1:15:07
You have to resolve yourself to that factor or if you don't, yeah, okay. All right, Cheryl, you were terrific. This was amazing. I really appreciate your time. Thank you so much.

Cheryl 1:15:20
Well, thank you so much for having me

Scott Benner 1:15:21
of course a huge thanks to Cheryl for coming on the show and telling us this story. Absolutely amazing. I also want to thank us Med and remind you to go to us med.com forward slash juice box or call 888-721-1514 To get your free benefits check. Get your diabetes supplies from us med thanks also to in pen from Medtronic diabetes head over to in pen today.com To learn more about the M pen and to get started. There are a ton of series inside of the podcast like the diabetes Pro Tip series and defining diabetes. You can learn more about them at juicebox podcast.com or on our Facebook page Juicebox Podcast type one diabetes

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#689 Ask Scott And Jenny: Chapter Sixteen

Scott and Jenny Smith, CDE answer your diabetes questions.

• How can I successfully encourage my adult child to manage his type 1 and try technology?

• What are your thoughts on service dogs for type 1?

• Why and does lack of sleep make blood sugars less stable?

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon 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, and welcome to episode 689 of the Juicebox Podcast.

On today's episode of the podcast the 16th episode of the Ask Scott and Jenny series today, Jenny Smith and I will chit chat and answer questions sent in by you, the listeners. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. If you love Jenny Smith, you actually can hire her she works at integrated diabetes.com. If you're a US resident who has type one, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the registry, take the survey help people with type one diabetes in fewer than 10 minutes, all while supporting the Juicebox Podcast, T one D exchange.org. Forward slash juicebox. I got that done so quickly. And in one take. I'm very proud of myself, swell of music. And then we'll get going

this episode of The Juicebox Podcast is sponsored by touched by type one, head over to touched by type one.org and find them on Facebook and Instagram. They're a wonderful organization. They're helping people with type one diabetes, and they'd like you to take a look and see what they're doing. Touched by type one dotwork. Today's show is also sponsored by us med. That's right us med is the place where I get Ardens diabetes supplies, and you could to us med.com forward slash juice box or call 888721151 for us med wants to give you your free benefits check and get you started today, use the number or the link. Actually, there are links in the show notes of the podcast player that you're listening in right now. Or at juicebox podcast.com. If you can't remember touched by type one.org and us med.com forward slash juicebox.

Jennifer Smith, CDE 2:33
We're doing questions, right? Just questions. So these are always fun, I like to

Scott Benner 2:39
so I will share with you and I'm recording this so maybe it'll put put me on the spot that in my mind I imagine a scenario where you and I on video live. Do ask Scott and Jenny's online one day. That would be kind of fun. Okay, and I have it's so close to figured out though. Here's the problem.

Jennifer Smith, CDE 2:59
See, I didn't run away.

Scott Benner 3:02
You didn't click off now. That's enough, buddy. Think bridge too far. Thanks. But no. So yeah, it's it's in the future idea. So what I want to do is like, I would do it in the Facebook group at Facebook allowed for the technology to put your mi video in there live and let people interfere but it doesn't. But there are some third party things like Facebook who do support this. And if people will say, well just do it over zoom the way you always do it. That's nice. But you only get a couple 100 people that way. I think that I imagined my Facebook group with 25,000 members in it. And I think geez, what if even just, you know, a small percentage of them happen to be online, you know, you'd get a few 100 People who RSVP and maybe you'd grab hundreds and hundreds more who happen to be online when it happens. So that's my idea. But the technology needs to catch up to my idea, but I think it's getting close. So cool. Keep your fingers crossed for that. In the meantime, how can I successfully encourage my 35 year old son to manage his type one and try technology? I lost my twin sister who was also type 120 years ago because of mismanagement, and he's following in her footsteps. I don't know how to approach him without causing him to become defensive. And he magic words. He's an ostrich who keeps his head in the sand. Yeah,

Jennifer Smith, CDE 4:25
that's a that's a hard one because it's from the standpoint of it being an adult that you're trying to usher some change into their life. People have to be wanting of information to begin with. Right. And sometimes the road to that starts with acknowledging something that's really important to him. That is more directly in his line of vision being impacted by the way that he's currently managed. During his diabetes, write, like your whatever it is, if it was, I really love running. And every time I go out for a run, I'm really frustrated, because I just haven't like figured out that piece, right? If you can find something that he really loves in his life, and bring in how that could be better, especially if he's frustrated with an aspect of that, that may be an in of sorts to getting him to see the ability to even use just a CGM to be able to better follow how he's planning, you know, to move forward through his day. I mean, I would say, certainly, maybe send him some of the podcasts, get an email and say, Hey, this might be a really good one to start with listening to you. But again, for an ostrich in the sand, sort of, you probably wouldn't really click on it. It's a hard, it's a hard situation,

Scott Benner 6:08
let me tell you that we we received as you know, a so many ask Scott and Jenny questions recently, but I chose about five or six of them and move them over to talking to Erica Forsythe about them, because she's a type one forever. She's a therapist on top of that. This was one of them, that I think I'm going to leave in both folders. I'm gonna I think I'm going to ask you this. And I'm going to ask Erica, this one. And I'll tell you why. Because I have no, obviously my oldest child was 22. And even at that age, I understand what this person is saying. Like they're people are adults, whether they're doing something good for them, or bad for them or right or wrong, or however you want to think about it, you've probably lost the ability to impact them by just saying, Hey, you probably should be doing something different, right? Correct. I don't think humans in general learn that way, which is my my go to example from my childhood always was, how many 14 year old girls have to come on Jerry Springer pregnant before other 14 year old girls go, you know, I probably should not get pregnant. And the truth is, it never happens,

Jennifer Smith, CDE 7:18
right? Like I should maybe not do what's causing the pregnancy,

Scott Benner 7:21
or just look up and think that I don't want that to be my reality. Right. Right. And so my point is, is that even in the in the face of good information, or good fellowship from people who care about you, or even seeing it happen in front of you, and you go on, like, Oh, that's a dumpster fire, it still doesn't stop people, people still have to go through whatever their path is. And some people find their way out, and some people don't. And it's a shame, but I think it's kind of true. And so, when I looked at this question, I related it back to what I tell people with younger kids, because in my mind, this guy is is in some way burned out on diabetes. But my expectation always is that, alright, sure, maybe there are people who are just flatly going to ignore it. But the truth is, they don't completely ignore, because if they did, they'd be in decay. And a couple of days they'd be gone. Right? Right. So they're putting some effort into it. It's my expectation that if the effort translated into reward, that that would be how you'd build more excitement, like they need to see something happen that's positive. And I just think that some people are caught me, you could just take one aspect of diabetes, right? Chasing blood sugars. If you start chasing a blood sugar on day one, and you don't know how to get ahead of it, you could do that your entire life. Correct, right. And I'm sure you see people that happens to all the time, I've seen people that happens to all the time. So if I had any advice in this, and this would be just me, literally reaching into my brain and pulling things out that I've seen before. I would wonder what would happen if this mother went to her son had a launch, sat down privately and said, Hey, I know how much you're struggling. And I see that it's not getting better. And it's got to be incredibly frustrating for you. I've learned how to do a couple of things that I didn't know about when you were younger. But I understand now, let me just lay a couple of ideas out here for you. Can I move in for a week? Can we get into a text chain can like let me be your lifeboat for a little while. I think we could get this going a little better. And then let's see where it takes us from there because maybe even just stopping the bouncing blood sugar, so the high blood sugars might bring more clarity to this this gentleman and maybe then the idea of a Pre-Bolus thing would start to make sense and you go hell if I'm gonna feel this much better. I'll put insulin in 15 minutes before I eat, you know what the heck? Right? I just think that there are times Let me rephrase. I think it's interesting that we would see a person who was addicted to, I don't know math and say, Well, I can't help them, somebody else has to help them, they can't help themselves, we have to take them to a professional. The problem with diabetes is there's no professional where you can drop off your mismanaged loved one. And say, right, can you can you get them straight for me? Right? So I think it's up to this, I think it's up to the person who asks the question, to just say, I'm going to become part of this. In any small way, I'm going to take a long look at this, I am going to help this, I'm gonna help my son chip chip chip away until he gets to a better place, I actually think it's possible just I think it's a lot of work. And you need a really long vision of what it is you're trying to accomplish. You're just not sending somebody a text and saying, listen to episode 11, you know what I mean.

Jennifer Smith, CDE 10:54
And then also, maybe from an understanding or a knowledge base, as well, right? If this mother has learned more than she knew, in his life, growing up with diabetes, or whatever, and she knows now knows more now, she may also be able to recognize some of the deficit in information that her son hands. And so from an information standpoint, like you said, sitting down and saying, hey, you know, I learned all of these, like new things. And I think, if you're willing, I'd like to help you start here. And or, if you don't want to work with me on it, maybe I can, maybe I know somebody that you could start working with it kind of develop a relationship, again, with a better clinician than he may have, you know, if it and again, that's where I think sometimes clinicians are at a loss because they, they don't have a very long visit. And they don't have a lot of resources, right? For something like this, they just often dump on more insulin, because something might be stuck high, for the most part, in a situation like this. And they think that they can at least smooth things a little bit. But they're not really addressed. It's like putting a bandaid. It's not addressing the issue.

Scott Benner 12:12
You know, I don't think I've ever directly said to somebody, you should go see Jenny. But this is an example where a person like you would be helpful, because even as I say, maybe the mother could do this. I don't know what their relationship is. And I've seen it. I've seen a lot of men walk out the little boys on a baseball field and talk to them and it goes well, and then the minute they walk over to their own son, they're yelling and screaming at each other. Right? So maybe it's not okay, maybe it's best not to coach your own kid. But But yeah, I think you have to think wherever we are, we're so far into it now that a well meaning handwritten note, or Hey, buddy, I love you, you can do it. Like you're beyond that. Now, you know, this person needs to see some stability in blood sugars, that makes them feel better and right. And they're saying they don't want to try technology. I mean, so then, could you talk them into eating a lower carb lifestyle for a couple of weeks, you know, just to just to kind of reset everything and learn about how insulin works first, right? I don't know that this question is any different? Interestingly enough, aside from the part where there's resistance from the person with diabetes, I don't know if this question is any different than how people feel when their kids are diagnosed, and they don't know what they're doing. And it's frustrating. And, but you know, you have little kids, I was talking to this woman the other day, I said that 11 years old, her son was so like, easy to manage, because he did what she told him, and then a little, little bastard got a little bit of testosterone going, you know, then all of a sudden, he's like, I ain't listening anymore. And, and she's like,

Jennifer Smith, CDE 13:48
independence, right? I mean, there's a reason that we move through stages of independence from little on. And that's

Scott Benner 13:55
right. Going back to this example, this lady said, look, here's a kid with a five a one, see, from what I learned on the podcast, hits, you know, a little bit of gets a little older. So armpits start to smell a little bit. And as a once he goes into the sevens, just because he doesn't do the things that they all know we're going to work. So, you know, and then she's going to be there because this is still a smaller child, and she's going to keep pushing and pushing and pushing and getting back to where he needs to be. But this is a different situation. I mean, if it is, you know, if this man is 35 years old, I'm guessing his mom's at least 55 years old, most likely in her 60s and, you know, the dynamics

Jennifer Smith, CDE 14:35
and may not live close enough. I mean, they may live across the country from each other and she only sees the downward trend. And unfortunately, she has a very bad like, you know, history of seeing I think she said her sister, right. So, that's hard to see, especially in your child. Yeah. Then

Scott Benner 14:59
well, and To your point I take to heart and I want to add to it for the kid. That means that when he was 15 his aunt died of type one diabetes he either had it then or got it at some point. And you know how people think like my dad died at 49 from a heart attack and people then don't expect to live past 49 when that's their story, right? You know, it's, I mean, it's silly but all right, you know, like I understand how it could make you feel that way. I appreciate you talking about this but yeah, okay. Let's do something slightly not as depressing Jenny here's a very simple question

Yeah, to see that common right little ad break us med this place, I love it. US med is the place where you can get your diabetes supplies. You go to us med.com Ford slash juice box or call my 888 number which is 888-721-1514. And us med will give you a free benefits check right now and get you started. US med accepts Medicare nationwide and over 800 private insurers. They have an A plus rating with the Better Business Bureau and they carry everything from your insulin pumps and diabetes testing supplies the latest and CGM like libre two and Dexcom G six. US Matt is proud to always provide 90 days worth of supplies to you and they give you fast and free shipping. So if you'd like to work with the number one rated distributor index com customer satisfaction surveys, the number one fastest growing tandem distributor nationwide, the number one specialty distributor for the Omni pod dash, the number one distributor for FreeStyle Libre systems nationwide. And the place where I just got Arden's on the pod five from you want us met us met.com, forward slash juicebox links in the show notes links at juicebox podcast.com. To these and all the sponsors of the Juicebox Podcast. When you click the links, you're supporting the show.

What are your thoughts on service dogs for type ones?

Jennifer Smith, CDE 17:28
Oh, that's a great question. In a simple answer, I think they can be a really wonderful again, tool, if you will. I do think that there are there are people that they are really valuable for. And then there are people that like I've I've never really considered getting a service dog. I haven't. That's me, that's my personal. But I have a number of friends who have service dogs. And they are a large benefit. And I think not only from the diabetes aspect in terms of acknowledging and alerting. But also from an emotional standpoint, the fact that you have a technology like CGM, that do already give you alerts and alarms. We know that technology can be wrong at times, it can fail, we can fail to hear an alarm, especially overnight, I hear that a lot from kids and teen parents, that the alarms are just if they weren't there, the child would just not wake up to the current alarm, they just wouldn't, right. So from the standpoint of an alert dog that actually works and works and works and works and works until you're physically like up and or some of them can be trained to go and get another person if there's another person in the home. I mean, they're I think they're a positive thing. That's but I also think from knowing about them. I think it's really important to do your homework on where you get the service dog from Yeah. I have, you can not only get ripped off, but you also have to know what, what do you want the service dog for to begin with. And then from a training standpoint, there are places that will do 100% or so of the training for you. You come and you learn how to interact you are almost paired or matched with that service dog. And you learn how to continue and foster the training in order to make sure that they stay alert to you and your needs. There are some service dogs that you can can get where the training is more of an online and it's more the person with diabetes that goes through the majority of the training and, and does it with their service animal. I, I have had I've had friends who have done it both ways. And for them, their decision was right the way that they did it for what they really wanted to use their service dogs for. I've got friends who literally don't go anywhere without their service dogs travel with them on a plane or a train. I have one friend, her service dog actually just passed away said, I know her service dog because I've met her service dog but I mean she is she rode for like the JDRF bike rides and everything. She actually bought a special trailer for her service dog to pull behind her bike Wow, to go along with her. So in that, you know, a guy guess you have to again, consider how much contact do you need or want within your diabetes life, I've got another friend who her service dog is with her. But when she flies or goes to a conference or something, she does not bring her service dog along. her service dog is mostly for her home based area or anytime she drives someplace. So do your homework, get from a really reputable place? And know what you need your service dog for what your what are your expectations that that that will provide for you or for your child or your TN? So Well,

Scott Benner 21:33
I think everything you said makes 1,000% sense. And I kind of agree with you. It's not it's not a thing we ever considered seriously. I do know in the beginning my panic, my wife was like, mate, you know, maybe we should do this. Maybe we should do everything you know, right? I would just say this, I've never done it. I know a couple of people who have them who are absolutely delighted by them. It is a way of life. You know, it's not the service dog, it's not a thing you put on a shelf when you don't want it, you know you've cracked, it's a it's basically another person that exists with you. And you're responsible for them. And there's a ton of upkeep and training and and love and everything else has to go into it. All I'll say is that Arden's Dexcom has never vomited on the carpet in my foyer. So both of my dogs have.

Jennifer Smith, CDE 22:23
Oh, that's interesting. That's kind of funny. I our current lab has only I think he's almost eight. And he's only thrown up like once in his whole life with us so far, I think so

Scott Benner 22:35
I'm just Dexcom is not gonna poop in,

Jennifer Smith, CDE 22:39
they won't, or fart in the middle of the night and have this horrid smell.

Scott Benner 22:44
Or if you go back to any number of the beginning years of this episode of the podcast, you will hear them snoring in the background and everything else. So anyway, if I think I think you're right, I think if it's something you want to be involved in, and you understand the level of commitment, and it's something you're willing to do. I see it as being a great, a great idea, you know, but it's also a cost. And I do want to say I've seen people ripped off by training companies that are not reputable. And I mean, the cost is significant, too, right? You're talking about 10s of 1000s of dollars. Am I right?

Jennifer Smith, CDE 23:20
I don't even know honestly, what the cost is, I would have to go back. In fact, you know, for some references to some good places, I can certainly ask my friends where they got their service dogs from for some references. And you know, then I'll give them to you to supply. But yeah, it's expensive in terms of cost. I don't really know what the cost is. But it's it's not $2. Yeah,

Scott Benner 23:45
no. Okay. Hey, I think we have time for one more. Cool. Why does lack of sleep make blood sugars less stable, even away from food exercise active insulin, I usually see a lot of 9095 9100s, etc. With lack of sleep, when otherwise on just basil, my numbers are a lot more steady. Well hold on a second. I don't know if I understood. Let's go back to the beginning. Because yeah, I don't think again, I don't understand her explanation. I understand your question. Why does lack of sleep, lack of sleep make blood sugars less stable? Do you think that's true? being tired makes your blood sugar less stable,

Jennifer Smith, CDE 24:25
less stable. Typically, what we see is with a poor night's sleep or consistent poor sleep, that your blood sugar's will be higher on average. And if that's what's meant by less stable, possibly, you know, especially if their roller coastering up and then you're correcting and they're coming back down. I mean, that could be less stable than what this person sees when they have good sleep overnight. Typically, yes, we see higher blood sugars with less sleep. That's the general

Scott Benner 24:59
I mean, listen, I don't have diabetes, but if I'm tired, I'm more likely to be distant. I get a little foggy, I can be more irritable, right? Like there's, there's a lot of things that come with not sleeping, you need to sleep. Obviously, if you didn't, I mean, life would be twice as twice as long. Right? But, you know, it's just so I'm not understanding the question afterwards. I usually see a lot of 9095 9100s with lack of sleep, when otherwise on just basil, my numbers are a lot more steady. See, I don't understand because 9095 9100 seems to me it would

Jennifer Smith, CDE 25:36
be steady and very good. Well, I wonder, yeah, I'm not quite sure. I mean, one big piece in terms of lack of sleep and unsteadiness or again, a rise in insulin is or a rise in blood sugar, excuse me, is relative to what happens to cortisol. Right? When we have when we are sleep deprived, if you will, cortisol increases and with that impact, typically can increase insulin resistance. So it sounds almost like steady numbers on Basil is what the person was trying to say. But with a lack of sleep. The numbers get jumpy. I wouldn't say that the numbers that were stated sound jumpy. They sound actually very stable. But overall answer to Question poor sleep higher blood sugars, insulin resistance, typically, that's the gist of it. Yeah,

Scott Benner 26:37
it almost makes me feel like when I read her description at the end, she says with just basil. My numbers are a lot more steady. I almost feel like they wanted to say a lot less steady. I I'm trying to decide this person saying that when they have lack of sleep, they have better blood sugar,

Jennifer Smith, CDE 26:52
better blood sugars. Yeah. Which wouldn't be the case typically.

Scott Benner 26:57
That doesn't make sense. Okay, but so but still lack of sleep can impact your blood sugar's you would normally see it as a rise as a rising.

Jennifer Smith, CDE 27:05
And if it was a really poor night of sleep, you may actually have a lot of other hormones are, are thrown kind of loopy in terms of the whole rest of the day, you may actually have a change in the regulation of hunger hormones, which might mean that your hunger is disrupted through the course of the day. And you may nibble more. And I mean all of these. Again, we've discussed variables. Yes, all of these variables could have an impact on overall blood sugar, just because of a poor night of sleep. Right.

Scott Benner 27:35
Okay, so All right. Well, thank you. I appreciate it. Yes, with me, sure.

First, I'd like to thank all of you for sending in your questions over on the private Facebook group. That's where I got these questions from Juicebox Podcast, type one diabetes on Facebook 25,000. Members, just like you head on over. I also want to thank Jenny Smith, my friend, and diabetes guru, integrated diabetes.com If you're looking for Jenny, and a special thanks to us med for sponsoring this episode of the podcast, US met.com forward slash juice box or call 888-721-1514. And of course, don't forget, touched by type one.org. I have a link here about service dogs that Jimmy sent me. It is. Oh, it's pretty easy. www care. Es que es.com. So it's C A R E S k s.com. When you get there, you're going to be at Canine assistants rehabilitation education and services. This is the website that Jenny was talking about earlier. Hope if you're looking for a diabetes alert dog, that this will help you. There are like 15 Other ask Scott and Jenny episodes right now if you're looking for a list of them, the private Facebook group is the place to find them. There are these wonderful lists that Isabelle made for me. They're up in the featured section of the Facebook page. And that's pretty much all I have about that rollout theme here a little bit. That's okay. Scotty started a little bit. Tell you what, let's just say this. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

Please support the sponsors

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Please support the sponsors -

Please support the sponsors

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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

#688 Type Two Stories: Jon

Jon has type 2 diabetes and uses insulin.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon 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, and welcome to episode 688 of the Juicebox Podcast.

Welcome back, everybody on today's show, I'll be speaking with John. John is my second interview in my type two stories series. John has type two diabetes. He listens to the podcast and wait till you find out what using insulin has done for him. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you have type two diabetes, and you would like to be on the show, please contact me. I'm trying to build a vibrant series of people living with type two diabetes, I would love for you to come on the show and share your story. I hope you reach out. If you have type one diabetes, and you are a US resident or the caregiver of someone with type one, please go to T one D exchange.org Ford slash juice box and fill out the survey, it will take you fewer than 10 minutes. And when you do it, you'll be helping someone with type one diabetes and supporting the podcast.

This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod five, and the Omni pod dash. To learn more or to get started today go to Omni pod.com Ford slash juicebox. The show is also sponsored today by Dexcom, makers of the Dexcom G six continuous glucose monitor. And to get started with the Dexcom. Again, all you have to do is go to dexcom.com forward slash juice box. Both Dexcom and Omni pod have different versions of a free offer. You have to go to their lengths to find out if you're eligible. But you could be eligible for a free 10 day supply of the Dexcom G six and you may be eligible for a free 30 day supply of on the pod dash. Go check them out and find out.

Jon 2:20
My name is John kafele. shouldn't give you that like patient presents with a kind of a thing. I'm I'm 61 years old today.

Scott Benner 2:30
Oh my goodness, happy birthday.

Jon 2:32
Thank you very much. And it's been a journey fraught with peril and joy, as most lives are, and I'm I guess I should just kind of give the dump about what my diabetes is. Yeah, sure. Um, I currently weigh 275 pounds at 61 years of age when I was 33, I weighed over 500 pounds. I have weighed over 300 pounds since my early teens. I was raised institutionalized in different kinds of group homes, boys homes, and even a mental hospital. And when I was 16, I self emancipated which means I ran away and hitchhiked across all North America and stuff. And that was a lot of fun. But my health and all the things that go in so I hear you have episodes about body dysmorphia, you have episodes about this, you have episodes of that. And I find myself in so many of them right and in many of them in ways that I haven't fully acknowledged or processed. And so that's something that podcast really helps me with is the great variety of personal experience. And even though I'm not type one, I'll get to that a second. I have found the journey of people with type one, to be very inspirational, especially the parents caring for the children. And given what I've told you so far, you can see that that's probably really important to me. So great, big hurrah to the Daya moms and the dads their forces of nature. And just really heartwarming to see what they go through and what they do. And I'm glad that they found you in this podcast in the community because the magic is there being bold with insulin and facing the challenges and dealing with them takes a lot of courage and a lot of information. So we really get to me I am type two, you can tell because my weight and everything. I've had all the tests for type one, I'm a classic type two. And what happened? Is this going well.

Scott Benner 4:28
Are you kidding me? I'm gonna I'm gonna cry in a second. May I? Can I Can I interject here? I never imagined that the podcast would help somebody with type two diabetes. I hoped it would. But it didn't imagine it would. And let me tell you why and why I think you're such a special person. For the entirety of the time that I've been doing this going all the way back to writing about it and being just aware of people with diabetes, you know, and having scope being able to See many, many people, you know, living at the same time sort of virtually? The one thing that I've thought forever is we could help people with type two diabetes, but they don't have the same drive to be evolved involved in a community. And I, you know, I mean, I don't know why, right? I'm not there with them. I'm not a psychiatrist, I don't have type two. But it always seemed to me that it was a difficult thing to like, raise a flag for, like, it's hard to stand up, I'm imagining and say, I have type two diabetes, because most people are going to think, Oh, well, sure you ate your way to this. And then and then that pushes everything back onto you that you don't want to hear, which might even not be true for you, by the way, but even if it isn't, you know, it's not something you want to hear if it is, with type one. It's a thing that happened to you, and you're fighting back against it. And so I think that's the difference. I think that a type one feels like a thing happened to me. And I can stand up and push back. And with type two, it could feel like I did this thing. And I'm embarrassed. And because of this, is that right?

Jon 6:14
Yeah, very much. No, sorry. My Facebook is doing that thing again.

Scott Benner 6:17
Okay, well, yeah, I'm

Jon 6:19
really sorry. Too many computers, too many things going on. Um, it's very true. And I've had to go through a lot of evaluation and deep thought, to deal with the what I call the the very real chasm, I guess, the gulf between type one and type two. And I have my, my guilt burden, of course, and I, you know, it's like sexuality and other things, is it nature or nurture, and doesn't matter? Right. Ultimately, it's about for me taking responsibility for what I'm doing, and for who I am and learning from well, as we'll see, in this discussion, it became a matter of having the right tools and getting out of the type two, stereotypes and assumptions made by medicine and everything I'll add to your thing about not think not knowing that type, the Juicebox Podcast can be good for type twos. I'm professionally involved in looping right now. And we'll talk a little bit about that if the opportunity arises. I work in medical data networks to one pal, and I work with Ben West. And I have been working professionally on providing Nightscout, a loop to people for nine months. And of course, everybody I work with this type one. And the things you say make perfect sense. I'm sorry, I'm almost starting to ramble so much behind this time wrap. But type ones, in my opinion, have been dealt this hand at various ages, but often very young, and you have to deal with it, you have to incorporate into your life. And with type two, you get a real long tail, right? You can drag it out forever and ignore it. I could go on a big rant, I don't want to.

Scott Benner 7:58
So I'm sure I'm not 100%. Right for every person, right. But I think big picture talking about how to build a community, I think I've got the gist of it. And because you can't build a community around type two, it's hard to get enough type twos together to show them, hey, here's some steps, right? Or some tools or some ideas, they might help you a little bit or a lot maybe. Because you can't do that. No one tries. And so I always just in the back of my heart thought, eventually some type tools, you're going to find the podcast, it's going to help them and then I'm going to bring them on and have this conversation because I believe there's a type two podcast that would be just as valuable to TOS as it would be the ones as this podcast has been the ones and I think you could tailor it to them. And I even know how I want to do it. I've known for years how I want to do it not gonna sit here because someone will rip me off. I'm 100% certain. But the truth is, is until you can bring enough people together to support it, it won't matter. I'll be talking to myself and the person on the other end of the line. So I need to build momentum so that I can bring in more type twos until it becomes its own thing and then I can split it off. That's my idea. I'm trying to stay alive long enough for that to happen, John, and I'll tell you as you can hear me trying to clear my voice maybe it's not gonna happen, but I'm doing my best over here. I really do I see a pathway to it. You just have to get enough people to get started. That's all I'm sorry.

Jon 9:31
No, I'm sorry. Um, I talked a lot over talk sometimes. But you mentioned you hope to be stay alive to do a thing and I just wanted to interject that I have my nephew and niece here and it's not by blood, but it's a really big deal and they are my nephew and niece. And I haven't spent a good amount of time though for them for some years, but they came over and they're spending my birthday here with me at the house. 13 Charlotte and 14. Michael and I'm long ago when They were born, it was my I could get a little weepy here, definitely, I'm a very emotional person. It was like I want to live to see them in their teen years, the same kind of thing you know. And so that gets around to me taking care of my health at night, right? So the touchy thing I don't know if you remember, but when we scheduled this, it's because I reached out all a bundle of fire and flame, to do something to reach out to type twos. And we had this conversation. And I recognize that what you're doing is really good. You have experience in this community, I have a lot of experience in online communities. But I figured, let me learn more about myself and my diabetes and how I can help myself and then I can maybe try to do a group. So I think what you say is very true. There doesn't need to be a space for type twos. And another thing I've learned more than anything in my life, and I've been through a lot of diversity and a lot of diversity. But I've really learn to the diabetic community, how very important is to take everybody on. I don't know if the word is at face value, but to appreciate the differences that everybody has, and not be judgmental or declarative about things and let people express and be themselves within us. And you do a really incredible job of opening that door for everybody to speak and everybody to participate. And informing my thoughts. I had to be not too judgmental. But there is the the thing about type twos have to kind of bring it upon themselves. I call it behavioral or cultural diabetes. And I think even typed ones, and everybody has it because they want you to eat the big gulf, they want you to have the Big Mac, they want you to have restaurant portions that are absolutely insane for everybody. And so that leads to ill health across the board, regardless of whether you're type two or not. When I was very young, I had a oral glucose tolerance test, and they said I was pre diabetic.

Scott Benner 11:54
How old? How old? Were you when that happened?

Jon 12:00
I think I was probably around 12 ish. I'm gonna guess around 12.

Scott Benner 12:06
That's shocking. Yeah, I mean, at that age, it's, you know, let's break you. Let's break you down a little bit so we can tell the story. So you rattled some numbers off at the beginning. But in your teens, you're over 300 pounds. Is that right? Yes, sir. Okay. By 33 years old, you said you were up to 500? About 540.

Jon 12:25
But I was weighing myself at a feed store. And that's as high as scale that was past the 500. The scale would go. But I linearly interpolated the distance to the stop pin. Okay. Is that crazy? Dang,

Scott Benner 12:40
I didn't expect you to say feed store. John, I actually you got you caught me with that one. I just, I was thinking, as you were saying, as you started to talk, once you get to 500, another 40 pounds is, it doesn't probably even seem like a big deal.

Jon 12:55
Well, I'll tell you what I did at that time, as Lotus 123 had kind of made an appearance. And there were some date of government databases out there. And so I made my own spreadsheet to track him just memory but like 20, micronutrients and other nutrients and macronutrients and everything. And I would model my food. And I would swim a mile a day, every other day at the gym. And that's quite a thing at that weight. But I wasn't trained swimmer as a child. And it's all about form, right? Every lap was the same amount of time, backwards and forwards. When you're moving that much weight around, you don't want it bouncing back into itself. And so my swimming training helped me to do that. And I lost over 100 pounds that year, but then it was on again off again, in the decades since

Scott Benner 13:40
so you could have so you could you could successfully lose 100 pounds in a year. But it would just come back. Well, the 100 didn't

Jon 13:48
come back. So I got down from the five plus to you know, round 420 or so. And then over the years, it gravitated towards about 350. Okay, and then I would make determined pushes, right to get it down. And I got down to like 280 twice, but then rolled back and I gotta tell you, I was before the start of the zombie apocalypse. COVID

Scott Benner 14:11
Oh, I knew. Yeah, I know. Yeah,

Jon 14:12
everybody did, right. I was 280 pounds. I'm 270 ish right now. You know, it goes up and down every day. But I mean, within a pound or two or whatever, but I'm about 270 now, so I'm kind of back where I was then. But even then, my glucose was not good. You know, and I've got certain amounts of issues as a result of that. I don't know I got a little lost. So that's okay. I

Scott Benner 14:41
have questions. That's fine. So that's,

Jon 14:44
by the way, I kind of mentioned somewhere as is that you'll drag out at me what we need to

Scott Benner 14:49
we'll see what happens. If I'm on my game, right. I want to know about I want to know about when's the first time somebody said Do you have type two diabetes about What age was that?

Jon 15:01
That by memory, mind you is some words in my very early 30s,

Scott Benner 15:09
okay. And then

Jon 15:10
I had some sort of a cold kind of thing, whatever, you know, it was getting a bit like, unpleasant and I went to see a doctor. And somehow they decided to do the glucose thing. And it was I think it read the meter read something like, Oh, my God, and they put me on insulin.

Scott Benner 15:28
And that's what I want to know about. So when that happens to you in that in that moment, and you leave that office the first time, do you have any idea what's really going on? I mean, what's the what's the discussion, like the training, What's your understanding, leaving there that day,

Jon 15:44
I was on oral medications for a year or two. And then I'm kind of having to go way back in mind muscle memory. And then I saw this doctor because I was sick. And then he said, You need to be on insulin. And he handed me a pen, and showed me how to use the needle. But he was a really bad doctor. First thing he told me is I had bad pulses, and my feet was going to work. I was going to lose them soon. That was 30 plus years ago, and every doctor I've seen since then says I have my pulses are fine. So you know, and um, he was interesting. Some of the things he told me, I tried to put the little cap back on the pen needle, the little cap. And he was like, no, no, no, you don't do that. And I stuck myself i That's a funny memory I have. But he was he right from the bat told me go ahead and shoot through your pants or through your shirt, and reuse needles, and things like that. Right. Which was, I don't know, it's kind of true, you know. So that was the advice he gave me. And I remember thinking, Wow, is this this is pretty interesting. And

Scott Benner 16:44
how important can this be if I'm allowed to do it through my denim pants?

Jon 16:48
Kind of right. There was the needle go through? Exactly. denim pants? Yeah. And I guess yeah, thank you. You drag that out. It was a sort of a feeling like this is just happenstance. And it's

Scott Benner 17:01
can't be serious. Was there any education about hey, insulin does this it's made your pancreas your resistant? Your any words like that at all? Like,

Jon 17:14
absolutely not. Okay, get exercise, eat better. Take these drugs and get over yourself.

Scott Benner 17:22
See, I have to tell you like that is infuriating to me. What you just said not even the first part of what I was saying. I can't imagine a reasonable person, let alone a medical doctor, looking at a person who weighs three 352 84. Who cares? You don't I mean, like one of those one of those numbers and saying to you, oh, you know what you should do? Once you go for a walk and eat better? Sorry, no, no, no. Right? Because, because when that happens to you, in your mind, you must think oh, my gosh, I wish someone would have mentioned this earlier. Right? So it's not as if you were unaware of your health, or your weight or anything like you're I mean, talk about that for a second, you're not just not unaware, I'm assuming it, even capsules, it must be in most of your day in all of your thoughts, right? Like, I can't even imagine that it must have taken a lot of a lot of courage to go swimming at that weight.

Jon 18:24
You know, so I was raised institutionalized. And all that I've been diagnosed with every mental emotional disorder there is autism seems to be the one I'm most comfortable with. But without delving too far into that my childhood was full of abuse of all different labels that we don't need to go into right now. And my mother, there's, you know, munch houses.

Scott Benner 18:49
Yeah, yeah, sure. I yeah, there's a better

Jon 18:51
word for that, that we use in the diabetes community, especially a scientific word. It's, um, I forget the word is, but it's like when you're faking a low or you know, you're doing these things, right? It's that Munchausen thing and my mother, bless her heart is a piece of work and have a lot of problems. So there was a lot of getting me to be seen by doctors for my mind and my body in everything. So that really made me just very resistant to the whole thing about people meddling with me and telling me what I needed to do and throwing me around and did this or that diagnosis or treatment or whatever my weight problems are and we're very clearly about self image and trying to buffer myself from a lot of the realities of life and just it's a whole thing to unwrap right but it's a thing I did to insulate myself I believe and to avoid things and that's kind of a standard pathology there I think for

Scott Benner 19:49
John Yeah, John, I'm not trying to I you can stop me whenever you want to, obviously, but you you consciously and subconsciously try to make yourself unattractive to other people so that they'll absolutely They'll leave you alone, right?

Jon 20:01
At one. I mean, by the way, I'm here to be honest. And so drag it out, you know, I got no pride, I got pride, but that's not pride, right? I'm here to share. So that's exactly that's exactly the case.

Scott Benner 20:15
Okay, so some of this abuse was sexual

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Jon 24:23
Podcast sexual emotional and physical

Scott Benner 24:25
okay all right. And so you're building a force field around yourself basically and the only way you you can as a child but but I'm still like it's funny I'm now I'm stuck on a bunch of different thoughts but now I'm still stuck back on. I feel like I feel like telling a person in your situation once you get some exercise and eat better would be like coming up to me and saying if you really want to dunk Scott You just have to jump a little higher. And and then thinking that you helped me walking away proud of yourself going I got Scott on the path to dunking, you know what I mean? Well, meanwhile I'm five, nine, I can't get five inches off the ground and nothing you tell me to jump higher is ever going to make me jump any higher. And, and so then having laid it out that way and seeing just how ridiculous it is, my expectation has to be that a doctor who would say that to a person in your situation, what they're really saying is the I'm writing you off. And that's my fear that like, you know how I've been experiencing this with my mom recently. A little bit not anymore. We found the right doctor, but I don't know how much of this I've talked about on the podcast. So just very quickly. At 79 years old, my mother is living on our own, just doing great. And one day just says to us, she's in pain and she can't urinate. We take her to a doctor. Well, we take her to the hospital, it's COVID time, My poor mom sits in the ER, six, seven hours completely by herself in a house coat. You know, because my wall my brother's sitting outside in the driveway, like watching her through a window. My brother finally extracts her from that hospital takes her to another hospital where she seen and they very quickly dismiss her and tell her she has a UTI that happens to older people they say they keep her for a couple days, give her a bunch of medicine a couple days in the hospital, give her a bunch of medicine. She's still not urinating any better. They send her home, still in pain. But on these medications, don't worry, it's a UTI, you're going to feel better. A week later, my mom calls me and says Scott, this is getting no better at all. It might be getting worse, I can't urinate. It's just like it was just coming out of her at that point. She couldn't force it out. But she was so full. It was just come out, took her to another hospital. at that hospital. They did a bunch of scans. And then they drained her bladder for where they removed 1000 cc's of urine from my mom sent her home. It's just a UTI. She's fine now blah, blah, blah. Of course, it wasn't just a UTI. Her bladder fills back up again. We ended up back in a in a in a hospital. This time I'm with her. And I tell them you know as they're making her wait hours in the in the emergency room again. So COVID I took the charge nurse at the desk and I said listen to me. I was like my mom is shutting off. Look at her like she's she's collapsing. I said you have to drain her bladder. Now we'll figure out what's wrong later. Thankfully, I did that because not only did they take 2000 cc's of urine out of my mouth, that's a two liter bottle of soda. My mom comes back to life like literally like a wilted flower that someone put water on, she just rises back up starts talking again. But the big deal was that with the bladder drain, when they did the scans, they were able to see the softball sized tumor that my mom had on her ovary. Oh my god. Okay, so she had now been to two hospitals, her own doctor and a urologist over a month while she's tortured. No one found a softball sized tumor on her ovary. And I'm going to tell you that if I didn't push her to get drained prior to the scan, they still weren't going to see it because the urine was blocking the images. So that's the setup to this story. The rest of it is she now finds herself in the hospital where oncology OB starts explained to us that surgery would be dangerous. He says a lot of things that make you kind of feel like he's on your side and kind of make you feel like he's not going to do anything.

Let's send your mom to rehab for a week, get her strength back and I said to him, Hey, listen, a week before she had 2000 cc's of urine in her. She had plenty of strength. She was living on our own. She just couldn't pee. She doesn't need rehab. She's plenty strong. She needs you to take the cancer out of her. And he says to me over the phone one day, I'm not going to kill your mom on an operating table. So she's got to get stronger before I do this surgery. And that was it for me right there. John. I was like, Okay, this man's plan is to manage my mom into the grave. He is not trying to help her. He has no, he has no considerations about helping her. No, he's lying to us. She's gonna die and he's gonna go off to cancer got her before she could get rehabbed. I'm so sorry. And that was gonna be the end of it. Now, how do we fix this? Well, we get lucky because my neighbor's son grew up to be an orthopedic surgeon. So I call this kid and I asked him Do you know anybody works in this field? And he says, a girl I went to med school with. This is her background. He contacts her she contacts the guy that she works under. He says Bring your mom down. We go see an appointment. He tells my Mom Look, you're gonna be dead in four months. If we don't do anything. This surgery might be really difficult for you. What do you want to do? And my mom says, Why would like to not go down without a fight? And he says great, he scheduled the surgery now. My mom has a complete hysterectomy. On top of the cancer on her ovary, they found more cancer in her uterus. And some of that cancer had jumped to her omentum. I think I'm saying that correctly, which is the lining sort of inside of your body. The surgery took much longer than he expected. And the next day, I'm on the phone with my mother and I'm like, How's it go? Mom? She was, it's great. I'm fine, big, you know, she's cut from stem to stern, basically right down the front of her. And I said, How's the pain? She was no pain. I'm all good. I said, well, they got you on the good stuff, mom. And she goes, No, no, I'm taking Tylenol and ibuprofen. So my 79 year old mother had a complete hysterectomy with complications, right, they fixed a hernia while they were in there. And she's managing the pain on over the counter pain medications. And a month before that, there was a man willing to let my mom die because he said she wouldn't tolerate the surgery. So that's a very, very long story. Well, it segues

Jon 31:03
perfectly into one of the real things I wanted to share. Go ahead, I mean, really perfectly. Um, I had tried at various times in my life to rope things under control, as you can tell about my story about my weight loss. And I'm actually I put together a video of my tide pool stats that I animated across last year. And you can see that even during the dumpster fire portion of that, which I call it, there were weeks where I really, quote unquote, tried. And I would really work hard to modify my diet and everything. But the problem was, I was on an ever, enormously increasing amount of long acting insulin. And so what happens when you're taking 140 units of Lantis, or Joseba, you can't stop eating. And by that I don't mean compulsively or obsessively, I mean, to stay alive. So if I take that much insulin, and then I decide to have a very austere nutritional day, the Westmalle ma rescue squad is going to visit me again. And that happened three times in the last year. But over the years, I would go to my general practitioners. And I would say, because I'm a very smart guy, I pat myself on the back. And I would say I want to reduce my long acting insulin. And I would start like to start using fast acting insulin to Bolus to manage the meal time highs or event highs and not have this. Elephants put on my neck. And always, it was eat right, lose weight and get exercise. And I really appreciate that you call that out? How do you tell somebody between three and 500 pounds to do that

Scott Benner 32:47
do better? Great thing.

Jon 32:49
It's just insane. And especially when this guy is telling you things that map, this makes sense. And

Scott Benner 32:56
in the bigger picture, you don't get the 500 pounds, because you eat too much only right. You get there. But he should be looking at you saying Do you see a therapist? Yeah, a psychiatrist, do you?

Jon 33:09
That was part of the problem originally.

Unknown Speaker 33:11
Right? Right. Yeah. Right. So

Jon 33:12
that's what got me there, you know, was the therapist and the psychologist, but it's not

Scott Benner 33:17
just what it's not just what gets somebody there. It's what holds you there. Right, right. There's there's variables to a person's life, just like there are variables to managing your type one diabetes, or type two diabetes, there's things that happen, that you don't necessarily see that maybe even others around, you don't see. That are main stressors for what's happening. Well, actually,

Jon 33:39
my, my brother, as I call them, and kind of his bro dad, he was a hump. Well, that's a whole nother story. But these are his kids, actually. And we're not related by blood. But there's a lot going on there. And we came up with the phrase that everybody gets what they want, and that it applies in certain ways. So the reason that that was staying there was because it was a mechanism that was serving a need.

Scott Benner 34:00
Yeah, yeah, no, absolutely. I

Jon 34:01
mean, I wasn't fat because I have food. I wasn't fat, because we're predisposition to this or that I wasn't all those things. It was I was desperately trying to cope with stuff. And that was a coping mechanism might come up with

Scott Benner 34:13
100%. And so a doctor telling you stop doing that. Well, that's

Jon 34:18
not doing what I think is working for me. Right, right. Right.

Scott Benner 34:21
keep in your mind, it's saving your life, by the way. And it's the same thing as when my wife had hypothyroidism before anybody would give her medication. Her life was crumbling around her. And they'd say to her, you just get more exercise and eat better. She's telling them like, you don't understand six months ago. I didn't do anything different. This wasn't my situation and you got to get more exercise and sleep, you know, get some more sleep. Are you getting enough sleep? It's just it's, it goes on and on and on. It happens constantly. It's going to happen to you. If you have type one, it's going to happen to you if you have type two, if you've been abused, if your thyroid stops working. It's going to happen to you if you're 79 you have cancer. thing everyone has to remember is that no one cares as much about you as you do. Not not even doctors. And even when you're caring poorly for yourself, right, right, it's exactly, it's not that you're not trying, you're just through forces and variables in your life and your psychology and, and in a number of different ways, you are making the best decisions that you can, and you are following the best paths that you can. And it's super simple to say just shut up and stop eating all that or, you know, you know, be normal, put the cookies away, you know, blah, blah, like whatever crap thing somebody might say to you about any number of anything. It's not about this, it's about everything. I hope that I hope that people listening can understand that what I'm trying to say is that everything we do, is influenced by more than you can see, even when it's you. And so coming up to someone and saying just do it differently. Is it kindred to like, I don't know, like finding a depressed person and saying smile? Well, thanks, because I'm depressed on purpose, because I forgot the smile, because that is absolutely silly. And it is the state of how we care about people, medically, most of the time, and often all of the time, we just don't see it, because it happens to certain people on certain levels. And some of you listening are lucky enough to be driven in the right way, educated in the right way intelligent, which you cannot take credit for. So that you can hear this basic advice. And then you take it home and put it into practice for yourself, really think about it. Who's really doing this for you. diabetes, right? Like it's a common thing. We always people say it all the time, in six months, you will know more about type one diabetes than your doctor does. Well, how though? Should that be real? Like, are you serious? Because I live with it? He's the guy. She's the person. Maybe she should try it? Maybe she should, you know, you know, engulf herself and diabetes till she understands it as well as I do. Wouldn't that make sense? Because the doctor that fixes your heart, they immerse themselves in heart surgery till they understand it better than anybody else. Why is this? Why is this acceptable? And that? The answer is I have no idea. This is how it works. This is this is the state of human beings helping human beings in 2022, this is the best you can hope for. And if you don't advocate for yourself, if you don't do the things that you need to do, and you expect somebody else to do them for you, you are going to come to a bad end. That's all now I'm all upset, John this early in the morning, I'm sorry. Well, you

Jon 37:45
know, I things come to mind, there's things I wanted to make sure to cover in this interview. And I also had in my mind, like, as the shows as the podcast unfold, even if it's something completely unrelated to me menopause, let's say, um, you, you and your guests overall, and expose different thoughts and ideas that are valuable to me. And I'm so I thought to myself, when I'm doing this, like, what do I expect? Also, since you don't pre interview, you don't discuss, there's no images here, you just call in and go. And that's very real in live. And I was like, well, where's that gonna go? Because he's, I'm very controlling. And I find that you know, as I've heard you touch on the right thing. So I want to really quick run through a couple of things. You were right on here, go and kind of the brighter side, like, where does it turn around, because I talked about a lot of kind of, you know, daunting kind of things. And so they would always tell me, you know, take care yourself, blah, blah, blah. And so this time, my GP a nice guy, but the same bad advice, moved out of state, I got a new GP. And this guy was brilliant, because I went to him again with my pitch, right? I want to get fast acting insulin because blah, blah, blah, and blah, blah, blah. And the guy looked at me and almost detached, but not but you know, he said, You need to go see an endocrinologist, would you like a referral. And he was like, we're not really going to talk about that Gaussian, Endo, and not in a bad way. And so I saw her a month later. And I like to tell the story, because what I did is I told her look, I'm the owner operator of this guy here. I'm the captain of my ship. And I'm looking for a chief medical officer. And I'm, I'm interviewing you for that position. And the key here is that you have the keys to the medicine locker. I don't and you have the skills and knowledge to assist and advise me in running my ship. And so can you work with that? She said, Well, hell yeah. And she said, Is your pharmacy such and such I'll send out a prescription for him a lot. And I give and so what she did is she gave me that that chart, I forget what you call it like 150 and above do a unit 250 Do another 200 Do another unit etc. And she sent me on my way to figure it out, not in a bad way he was she is incredibly overworked. And she's a saint, because I'll tell you what happened in that meeting after after she said, I'll send in the prescription for the Himalayan. She said, Have you ever thought about a pump? And I'm gonna take two. And I never thought about a pump. And for me a pump was somewhat akin to a backpack, with hoses sneaking out of it, and you know, some, you know, thing. And I thought, well, that's not for me. But then I thought, hmm. And she said, Yeah, I said, Well, tell me more. And she said, blah, blah, blah. She said, There's tube and tubeless. And I sleep like a blender. There's just no way a tube situation goes to work. And then she mentioned, you know, the tubeless thing. And I don't want to turn this into an advertisement for Omnipod. But I'll tell you what, I live 40 minutes out of town stopped at my pharmacy and picked up the human log. I'm a real smart guy. I'm all about the Google and before the Google the Dewey Decimal. And I learned things. And so I never had filled up my mind with what a pump was. So I got home, and I got the human log in my home, let me check that out. Let me give a dose of that or whatever. And I'm reading about the Omni pod stuff. And I get a call from the from the Omni pod rap. And at the time, I was on Medicaid because my business imploded. And, um, you know, that's COVID story, right? And he said, Well, you're on Medicaid. And the funny thing is what Virginia has done as of like, last month, you're good to go. And we'll ship you out bunch of these zombie pots.

And that was fantastic. And now all of a sudden, I was the owner of a whole new thing, right? fast acting insulin, and now even a pump. And so I was devouring, you know, just screens, pump screens and tabs upon tabs, and I was learning about it. And then the only product rep called me and that happened. And a bad experience with my pump trainer, she got me started said we would talk again the next day on three, three days again later. And it took 10 days to get hold of her. Well, in that period of time. I had read read before about artificial pancreas and I studied up on it. And I built loop and started running loop. And I was running it open loop and fiddling with it. And then I figured well now I'm gonna need a Nightscout. So I'm very data driven. But I was going through crises, you know, the change and everything. And I was I was really going through, I just didn't have time. And I just wanted to get the thing up. And I'm not trying to make this a pitch. But I found a business that offers a prebuilt you just sign up and your Nightscout is there. And I work there now. And I have a small tech support as you're getting started. And I mentioned that in my documents in my tech support tickets. And you know, next thing you know, I'm working there, and I do well, most all the tech support. And I also do engineering. I'm a Unix and systems engineer. But um, it just shows how deep that getting things. So that's a side thing. But the important thing was I was looping right away. And the other important thing is that so I'm working with them last and I'm getting to meet people who are very familiar and intimately involved in the whole thing. And they've told me repeatedly that we never thought this would be something type twos would use. And so here's an interesting thing is I see peptides that I've had now since I'm getting back on to take you realizing I'm a diabetic and that I want to not that I want to live I want to live comfortably until I die. You know I'm saying I mean I want to live but this is just like stop the terror. And I'm in so anyways, there's this thing about we never kind of thought work with type two. So C peptide, right? So I am insulin panic, which is an unusual thing for type twos. Type ones are insulin dependent, which means they don't make sufficient or any insulin as you as we know, you know, it doesn't mean absolutely zero, there's a little bit of variance, but it's pretty much you know, none, but I am in that boat. So I'm at risk of DKA and other things. And I'm learning to understand and live with that. And it may be that, you know what it is is we know that at the end game of type two, you lose beta cell ability, right? And I don't have autoimmune and so things I've come to understand is I don't have the complications of autoimmune. I'm not allergic to this. I'm not allergic to that. Hashi motos, celiac. All the other things I've heard about learned here. Those aren't on my back, right? I can eat poison and do fine. You know, I'm saying I got that kind of cost. I can eat class shards mixed with poison and I'm good. No allergies or nothing. So but I am insulin panic.

Scott Benner 44:45
Hey, John, let's stop for a second just to find that for people just in case that's not a word you hear too often. But it very simply. I want to make sure you're using it the way I understand it. It just means that you're you're just producing an inadequate amount of insulin Right? Correct. Okay. So, and most type twos produce a zone that gets overwhelming amount of insulin, right? That just doesn't get used or, or. Right. And that's why we have 200. And you 500 Right, right. Okay, go ahead. So, hey, so real quick. Let's stop and go backwards for a second before we get too far away from this, please, prior to them putting you on insulin. Your management consists of I'm guessing Metformin, Donald's mix. Where you were taking you were taking Metformin, what was it doing anything?

Jon 45:37
How I mean, how could you even tell us pissing into a tornado?

Scott Benner 45:40
Okay, was there anything else they were giving you besides eat right and go for a walk?

Jon 45:45
No. And but I'll tell you right now, I'm on a GLP. One, I have been for many years as trans transition from what's it to ozempic. And on SG LT two Jardiance. And those are additional drugs that are not indicated for type one, you don't want it for type one. And as an interesting thing there because those can complicate insulin therapy. As you may have heard, Jardiance and stLt. Two can lead to hypos, it very much complicates things.

Scott Benner 46:16
Okay. I'm sorry, I get confused when people say it was that big, because then I hear the jingle in my head. And if I don't, if I don't play it out, in my mind, I can't get rid of it sometimes, but it's gone. Now. I took care of it while you were talking. So

Jon 46:32
you're the ranking that sometimes I'm a little bit envious of type ones. I'm joking, right. But they don't have to dial in those elements, they do have to dial in the attendant on immune world, right. But you're not having to manage those drugs and insulin at the same time. And the other thing I want to point out is my diet, I eat less than 25 grams of carbs a day, all from fresh vegetables. I do not eat anything that I don't prepare and cook in my house from raw foods. I'm not some hippie dippie thing on this. It's just science, pure science. There's hippie dippie elements to me, but this is nothing other than medicine. Okay, and if I do eat a sec, I eat one meal a day. And if I do eat a second meal, it's an omelet in the midday. And that's just what the important thing here is. That's what works for me. When I see your kids out there having chocolate chip waffles and you know who I'm talking about? If you're listening to this, I live vicariously through the chocolate chip waffle. But I've had every card cheap and expensive, deep and rich that you can have in a human lifetime. And I've got memory banks. Cool. I don't need to go there.

Scott Benner 47:41
I'm starting to change that

Jon 47:43
happened to me this time. Yeah. John

Scott Benner 47:45
at 50 years old. I'm starting to understand why older people stop eating.

Jon 47:50
It's a it's a it's a bother. I just

Scott Benner 47:53
I've had it already. I'm good. It's not gonna be surprising when I eat it.

Jon 47:59
That I want to say also, I cook the hell my kitchen is a temple. I do. No, I'm serious. And I love to cook. And I cooked with these kids last night I made the most beautiful Faroe Islands, salmon, and steamed brussel sprouts.

Scott Benner 48:14
I bought two steaks yesterday, which I will smoke tomorrow. And then I've

Jon 48:20
been taking up smoking.

Scott Benner 48:21
Yeah, I will slice them down very thin, and eat them as I walked. But like a couple of times, they'll reach in and pull a couple slices out and eat it like that. And that's the happiest I'll be because I'll be you know, I don't know, like I'm just not snacking on snacky stuff and etc. But But, but I want to understand you start using insulin. You go pretty much right to looping. Is that correct? timewise you're not too damn straight. Yeah. Okay. All right. So insulin on the pod looping. When do you find the podcast in those steps?

Jon 48:55
Right around there.

Scott Benner 48:57
Okay, find the

Jon 48:57
podcast because I'm all I'm a heat seeking information missile.

Scott Benner 49:01
Okay, well, that's beautiful. And then at that, so I want to Timeline this at that moment. When you find insulin, what's your weight?

Jon 49:11
My clinical weight measured in the office was 337 pounds.

Scott Benner 49:15
Alright, so your 337 when you find when you get on insulin, you also make other changes to eating at that point. Where does that come after you start having some success.

Jon 49:26
So you know, the funny thing there is it starts happening right away. But what's really cool is to see continuous process improvement and the results. And so it started really fast. It was really getting dialed in, but now it's much much much more refined. Right? So at the time, I was still doing a thing where I'd be like Look, don't eat compulsively don't eat all the time. Don't eat all don't graze through the night and more like grazie was kind of like a snowplow on the highway. And just knock all that off. But then my comfort was a delicious sourdough sandwich recipe If cheese vegetables, and you know those huge planks of sourdough bread. Oh, there's nothing I love you the one you know, I'm talking about through a big bowl right from the middle slices,

Scott Benner 50:10
I would toast it and throw a little bit of sea salt over top of it to

Jon 50:13
stop it. I could just live a life of that. Of course. Yeah, by the way, right now, right now, in my head. I'm just getting the memory back. I don't need it. But I certainly remember it. I love that sandwich. But that was 50 grams. And I'll tell you another thing. So the CDE, the educator that they hooked me up with their who's dealing with a million people, it has a very conventional outlook, told me I should be eating 50 to 65 grams per meal, three times a day and 215 grams snacks. And when I got to just when I actually had the Bolus for those and watch the effect, oh, I should also tell you that I was using Dexcom for four years to the week before I started this, okay. And all it was was this damn alarm. And I think that my friends would call me out

Scott Benner 51:02
here. Yeah, you suck. John. I bet you that's what it sounds like when it was beeping.

Jon 51:07
Yours. My friends, I'd be on the phone or something like this, or even with some people, I don't get out what it'd be like me, me, it'd be like that look. That will look like it. They were like the extra volume to the alarm. Right?

Scott Benner 51:22
Hey, let's go on to that for a second. So where was that high alarm set?

Jon 51:28
I lived my life between 250 and 350. Okay, so I'll tell you what if I woke up in the morning, under 150, it was a glorious victory.

Scott Benner 51:40
Okay, I've heard people say that wearing a glucose monitor for someone in your situation. Can for some people offer a window into things that they didn't know what was what was happening, and that that could help motivate them towards change. But it may not work that way for you.

Jon 51:58
Here's the important Well, here's the thing. Now, I'm so glad we're here. And I love your interviewing skills. And it's both a matter of knowing the person you're talking to you somewhat listening and your own knowledge about these things. But this is the important part. It didn't. And the reason was because they didn't have the tools. Now here's the glorious thing. So that's why I was getting tea. She said Do you want a pump, right? And then the guy says your pumps are on the way. And then I'm googling what the world of pumping is. What is this stuff? How does it work. And then I got loop where right now I run loop Dev, I run something called a switcher patch. So it allows me to just change the amount of the auto Bolus, there's a level at which auto Bolus switches from Basal adjustments to auto Bolus is also a new negative iob thing. It's all very cool. So for me, it's like science, science science, right? And if I have the data and the tools, and in other words, the knobs and the dials now I can have effect before it was like anesthesia. That's what the treatment was pumped, jam this stuff through your leg and roll and exercise. And so it was this big veil of ignorance and a thing attached to me that would just tell me how bad I was doing. Yeah, yeah. And so the thing that the crucial victory for me was having the tools to adjust the data and to get the data where it needed to be. And to understand that the data was a true reflection of my health in the moment. Is that No, I'm important as I want it to be.

Scott Benner 53:25
It's perfect. It makes perfect sense.

Jon 53:27
And so that, for me was the liberating thing that changed things. And so I told you, I've lost before, right? I've been to at before, but through those journeys, one of them was like this liquid diet thing with the hospital and the whole thing and the other was similar, you know, and the best one was that first 100 pounds I lost. Well, but that was bringing me from the brink of literal death. Right. In other words, I think I dropped down to 400 Because I could maintain that wonder.

Scott Benner 53:54
Yeah, so 500 It's, it's critical mass, like something bad's gonna happen really fast. So you

Jon 54:01
got when you cannot perform basic daily intimate hygiene needs. Are you with me? Can't wipe your ass you can't wipe your Ascot you know, I'm really like out here and i

Scott Benner 54:15
By the way, there's a huge part of me that wants to call the episode can't wipe your ass Scott.

Jon 54:23
Oh, yes.

Scott Benner 54:24
Yes, yes. Yes. And I and I made a note to thank you for saying last year at some point in the episode saying which you said ostheer earlier and I was like, well, there's a word I don't get too often from people. I appreciative of that. But so Okay, so you

Jon 54:42
you overcompensate with vocabulary? Yeah.

Scott Benner 54:44
Well, I like a nice word once in a while. So you dive into this whole thing. How long ago? Is you starting insulin on the calendar?

Jon 54:53
See, that's really hard to nail down. Right. Okay. Because again, it was like a big veil of ignorance. You know, I'm marketing In my life I can remember was where I was when I had a thought 20 years ago, but I can't exactly fix that, right? So you fix it with where that doctor's office was and where you were at the time kind of thing. And in my mind, that's got to be in the early 2000s, like, early 2000s. And I remember the doctor saying, this is some new stuff. And that was Lantis. Now, I know Lantus was kinda like 99 ish or something. I don't know. 995, maybe even I don't know. But I guess it was new to him, right? Because he was like,

Scott Benner 55:36
Well, John, it's funny, I knew this, but he got away from me too. So all of this, any success, I'm making finger quotes that you had over the last 20 years, like, you know, waking up at 150 Being a good thing, most of the time living over 250, that was with a background insulin happening, you had a Basal insulin going on in you, and that was still your outcomes. And you know,

Jon 55:59
it was 60 for a long time. And then it went up and up. And then it was 80. And then it was 100. And then it was 120. And then it was 140. Wow. And that was to have that kind of profile, right. And then I would have an austere day. And I talked to my friends at the end, I'll tell you funny thing about that, um, lows, as you know, lows aren't the same as they were, then I can, I can be 50. And I don't get there. But I could write I mean, I really do a good job of not having lows to my lowest lows. After the first couple, I had a 51 or 52. But my lows now, run 6165. And I actually set my actual range down to 65. Okay, because I'm not too worried between 70 and 65. And I'll tell you think about that, Scott, thank you, I have learned not to fear insulin, because I had tremendous insulin trauma, tremendous and feared the hell out of it. And now I'm making a move to the powerful stuff, right. And, um, it was frightening. And what I got from the podcast got more than anything, was the context to understand the use of insulin. And that you don't have to be afraid of it and that it's a tool that you can use effectively.

Scott Benner 57:16
That's great. It's long been my feeling that you can't possibly take good care of yourself with manmade insulin if you're afraid of it at the same time. And, and that's just I've been, I mean, before the podcast, I would write about it, just trying to get people over fear, etc. So okay, so blanches forever. Now suddenly, you're pumping so you know now your Basal insulin receiver for a while, right, you got to receive and there's

Jon 57:48
receivers even worse for what's going on with me because receivers halflife is double. And you can't get out from under Lantus. But you sure as hell can't get out from underneath receiver. That's something you got to deal with for days. Right.

Scott Benner 58:00
Gotcha. So when we go to pumping, how long ago was that?

Jon 58:05
That would be I started pumping July 1 of last year. Oh,

Scott Benner 58:09
okay. No, yes, yes. July 1, July 2021. At that moment, you weigh what?

Jon 58:16
330 psi. I mean, I 337 like two weeks before that. So let's call it 330. All right.

Scott Benner 58:22
And now we're in April 2022. May, June, July, you're not you're only nine months into this really? Where's your weight now?

Jon 58:29
Under? You know, especially the bigger you are, the more variance you have through the day. So morning weigh ins are always the best. And I'm consistently coming in under 272 For the last four or five days.

Scott Benner 58:40
Wow, that's really something so you're down. Jesus. So yeah, he's a calculator about 6065 pounds maybe. And in nine month, and the end the the change is your managing your hands. It's funny, because I think people would think, Oh, higher blood sugars. You must be that must be better, because you're probably losing insulin, like I don't mean better like that. But I mean, you must be losing weight, because your blood sugars are high all the time. But that wasn't even the case. You know, how since ever even thought of that some eating disorders. You know, I mean, we've talked about it enough. Now, please don't want to do this. But you can manipulate take your insulin away, make your blood sugar higher. And you know, you almost like when you're you know, when people are diagnosed, like I was so skinny, right? They were so skinny because they were in DKA. Probably they needed insulin and they didn't have it. So some of the eating disorders involve you manipulating insulin to keep your blood sugar higher, so you'll lose weight, but my point is, is your blood sugar was plenty high and you are not losing weight. And so now you've got your

Jon 59:46
treating with metformin, McDonald's, you know,

Scott Benner 59:52
yeah, and you're treating with nothing, you're not eating well, and so now you're eating obviously, how many how Do you think about you think about his calories during the day? No,

Jon 1:00:02
I do not give one whit a calories are meaningless to me. All I care about is my carbs and my glucose because everything else will follow. Gotcha. If I'm treating my carbs, right, and I'm not having to use massive amounts of insulin for it, and there's nothing wrong if you're 17 or 35, or whatever the hell and you're not obese and so forth, then you know, have all the cake you can please and think about me while you're having it. But I don't need that it doesn't work for me, right? So part of my metric or as it were, is reduced insulin usage indicates reduced need for insulin, which means less glucose, which means less nutrition. It has to be good nutrition. That's the important thing for me. I cannot spend my my grams on crap.

Scott Benner 1:00:52
Yeah, the glycemic impact from the foods

Jon 1:00:56
that I just can't spend it on crap. If I eat something that has carbs in it, it has to have nutritional value. Good nutritional value, it has to be cauliflower. It has to be broccoli. Carrots are, you know, higher, but they work really well for me, right? I don't do potatoes. I don't do rice. I don't do I will have like two slices of Dave's than sliced bread a month maybe. Because I just the stars line up that I don't have vegetables ready or I didn't go to the market or whatever. So I have an open face. Amber. Yeah. But anyways, yeah, the important answer your question there is I only care about carbs. And I don't have a protein rise. That's interesting. I thought I would get a protein rise because the volume that I'm eating it, right, like we'd have to get it somewhere. And so what I think is going on is there's just so much coming out of my fat.

Scott Benner 1:01:46
Do you have any feeling that your is your own insulin production helping you at all or no? Right? Yeah,

Jon 1:01:52
I mean, still in a panic there. Yeah, there's so really the answer your question is I so part of that answer is where I am right now is I have an agency of five three measured at the lab on Friday and compare ation for this. And my coefficient of variation and standard deviation are both 10. And what's the other factor my time and range? 65 to 120 is 96%. My time and range to 140 is 100. And so that's kind of bragging in Hell yeah, right, take your victory lap, but more, it just reflects the control I've been able to achieve. And you can't really I think you can't really, you have to have minimal variability to do that. Right? I mean, you have to know where your sugars going.

Scott Benner 1:02:42
Yeah, it does. Does that make sense? It makes total sense. I'm gonna say something, please take it away. I mean, not the way it's gonna sound. But the podcast helped you with all this, right?

Jon 1:02:53
You know that. So there's a thing I take comfort, what I get from the podcast, is I enjoy your interviewing, I'm in the car, or whatever, I listened to PBS, I don't listen to music, unfortunately, I do at home. But I'm all about the data. And I'm learning those things. And this has a very, a somewhat, you know, pbse kind of tone to it. It's very informational. There's a rich amount of information. So I get that from and I get community from it. And the funny thing is, this is largely a type one community and even within that, it's largely a family community. And neither of those things am I. And yet, I get a tremendous amount of community from it. And I wanted to do some shout outs here for some names, but I realized I couldn't get them all together. But there are a few people out there that I recognize and hello to you that have typed to, and are not afraid to talk about it and understand that, you know, whatever it amounts to you have take responsibility for your health, right and do this thing. Whatever was unfair, is still unfair, but you're the person that's carrying that burden.

Scott Benner 1:04:01
I'm, I'm incredibly proud of you. I know that that's a weird thing to say, we don't know each other, we've never looked each other in the eye. And when you reached out to me to tell me how you were doing, or when I see you in the Facebook group talking about how you're doing. I mean, if the podcast was valuable to you in any way, like I don't care if it's about using insulin, or if it's about community or if it's just about making you feel better in any way at all. I take a lot of I just take a lot from that. And it makes me feel terrific. And it and it to me kind of proves out the idea that anybody using insulin would find something valuable about the show or those with insulin, Scott. Yeah, that's really

Jon 1:04:41
one of the main things and community and really within that you do a good job in the group and it's not hard. I've run some groups in Facebook that have a few 1000 people very heavy participation for a decade, and we don't tolerate nonsense. You're either in there because you want to be there and you enjoy people. And if you're one of these slike zombies, you just need to go and do that stuff some results. And you're able to actually give people a lot more leash than I would allow in my groups to catch themselves and recover, and then they do. And that's a pretty good feeling, I'm sure. And it's a good feeling as members of the community to see those people understand the vibe in the group, which is to be supportive, non judgmental, and open minded is an important thing. And that's something I get out of all of your, the after dark episodes, we could do a hell of an after dark episode,

Scott Benner 1:05:33
maybe we will one day, John. So it's kind of like those

Jon 1:05:37
60 minutes or whatever interviews where the they're in the shadow and their voice sounds like this.

Scott Benner 1:05:43
I actually, I tell you, what, if I knew how to do that, I have an episode I could release, but I have one recorded. I don't want to say they work in an endos office. And they basically talked all about what they think goes wrong, and it endos office, but it's so obviously this person that I can't release it, they'll get fired, and I can't figure out how to change the person's voice.

Jon 1:06:07
I wish I told you I work with people that are meaning to use Nightscout and loop and not so into building it. Right. And um, so I spend a lot of hours not only do I do engineering, Unix, and TCP IP, you know, networking, all those kinds of things. DevOps, but I also do the support. And I probably spend about 12 to 20 hours a week talking to people about how to use these things and talking about their diabetes, I'm not, none of the advice I give is, should be considered nothing I say should be considered advice, medical or otherwise. But every single one of them I work with, this is the things I tell them about. And I tell them about, I tell them, they need to go to Juicebox Podcast. And I tell them that Integrated diabetes is out there. And the funny thing is, it's not because of you endorsing or doing those things, it's because that's my endorsement, based on my observations of what works and I think that people out there newly diagnosed or diagnosed for a long time, but not on their game or feeling they're not on their game. If they listen to this podcast, if they listen to the Pro Tips series, from beginning to end in the order that's intended. They're just going to come away with with a real journey begins level knowledge of what to do. And then they just practice it and they ask questions and they can go through it. And that's for me what this resource is that you've created. It's an open non judgmental community that teaches people how to use insulin.

Scott Benner 1:07:39
Yeah, you know, Tony, by the

Jon 1:07:40
way, I've been wanting to say this for a long time, Scott, go ahead. I call you. You're gonna chuckle I call you the prophet of insulin.

Scott Benner 1:07:48
But that made me laugh. That's exactly what

Jon 1:07:50
I say. I say Scott Benner is the prophet of insulin.

Scott Benner 1:07:54
I am, I have to tell you, of all the wonderful things you just said, it's possible if I had to rank them in the order that I'm most proud. It's of the part you talked about inside of the Facebook community, giving people time to get through whatever thing is happening to them that caused them to not want to be part of the community the way you described, but be a contrarian, or you know, be difficult. And I and I want them so badly to get to a better place

Jon 1:08:23
than touched on this in a recent episode is that people are so angry at their diabetes,

Scott Benner 1:08:27
dads, and it's so understandable. I can't, I'm not going to be the one. Like, look what you've just explained, right? Or what any number of people talked about coming on the show or what you see online. The success that these people are happening having? I don't who am I to keep them from that? So if they show up in my thing, and they're, I don't know, not not exactly, you know, ready to have conversations or feel good about things or whatever, and they they lash out or they're, they're difficult or trying to stir the pot or whatever it is they end up doing. I don't feel like I'm I'm not the I'm not I'm not the judge. You know what I mean? Like, I don't get to say you don't learn about Pre-Bolus thing. You're gonna be you know, who am I to take that from them? I've just seen so many people, adults, elderly, children, parents, everyone, right, you know, red, yellow, black, green doesn't matter. Like all these people have these experiences and their health gets better. And I am not going to be the one to stop that from happening to them. So I try my hardest to shepherd them through whatever's going on remotely from my desk, and now Isabelle helping in the Facebook page as well. She

Jon 1:09:42
was just wanting to get a break and hi so funny. I was just now waiting for the break so I could mention Isabel

Scott Benner 1:09:50
Yeah. So she she's such a great way she'll be on eventually. I imagine Hold on one second as I text my mom that I'm busy. Give me one second here. Um

I don't, it's got to be back in the oh my god, it's must be over six months. Now, I get a note from this person that basically says, I see what you're doing and I want to help. And that says, That's a scary proposition for me, because you've described that I'm doing okay, you know what I mean? And I know why things work. And I know when to push, and I know when not to push, and how can I bring another person into this? Because they're not gonna understand my sensibility. But I get on the phone, and he or she is a grown person with her own children. And says that, yeah, he she, but she knows what I'm doing. Like, like, I felt like when she started explained to me what she thought I was doing. There was part of me that was like, is she in this room? Like, how she, like, she really just got me and ice and now Now imagine this situation on them? It's not it's not a fun or easy job. I can't pay her. She just does it. Through kindness for other people. And I can't wait. That's why people that's why people write loop. Yeah, no, of course. I mean, John, it's insane, right? For all the doctors and all the institutions and all the companies, your your entire story about how you escaped every medical thing that was happening to you. Basically, all the touch points are aware of nice people in the world who are also struggling with a thing that you have came together and did a thing and made it available to everybody else. And I want to tell you something I might sound angry about in a second. I don't mean to but it just bothers me so badly. When I started this podcast, I got a note from a person who told me that I was going to hurt somebody by telling them to be bold with insulin. And to that person, I say if you if you are here today, and you hear this episode, you please hear that it it saved John, and amen. Yeah. And I know how many people listen to this podcast, and how often it is downloaded and streamed and listened to and I won't say those numbers specifically out loud. But I will tell you that more people will listen to my podcast today, then we'll listen to probably every other diabetes related podcast this month, combined. And so

Jon 1:12:26
you need you know, honestly, though he only reached 100 people.

Scott Benner 1:12:29
Oh, it would be amazing. And it was it used to be amazing. John, I used to trust me first month of the podcast 1300 downloads. I'm going to tell you right now, there better be more than 1300 downloads in that hour. You and I are talking or I'm going to be like, oh, something's wrong. So,

Jon 1:12:45
you know, like some of the time this makes it to the Aerobie a million.

Scott Benner 1:12:48
Oh, please, the show's gonna hit 6 million total, soon, a week or so. And it's very possible that it could be at 1112 13 million in a year.

Jon 1:13:03
And the important thing there is that's an indicator of the reach.

Scott Benner 1:13:07
Forget the reach John, calling it a prophecy makes me uncomfortable. But

Jon 1:13:11
the I use it humorous. probably hear the smile.

Scott Benner 1:13:14
I did. I did. I just got to make sure people don't think I actually think but

Jon 1:13:19
not it's really you're a voice in the woods, telling people insulin is good.

Scott Benner 1:13:29
I'm telling you, if you need insulin, you need to use it. And that's that's that and it's not stalking if you need it. It's not stalking if you need a job. That's Bolus thing. You know what I mean? Yeah, point point is, is that is that people need, they need the truth. What they do with it after that is not my business. Right? If if someone hears bold with insulin, and decides to give themselves 20 units when they need to, John, I don't know what I can do about that or not do about that. But I can tell you that I don't think it's incredibly likely that someone's going to go from a two unit Bolus to a 20 unit Bolus and hurt themselves. But what I think is important, and what I have seen proven out over again, is that part of my job is really just to be a coach. I'm sort of the guy that slaps you on the ass while you're running out on the field and goes, you can do it like that. That's sort of that right? And how are you going to do that? You're going to do it by understanding how insulin works. And you're

Jon 1:14:26
there's your every time that you turn a lap, you're there saying that? Yeah, we're gonna crowd the crowd behind behind him to the side of you is saying that, um, it's hard not to want to finish each lap. And what

Scott Benner 1:14:39
it does is it draws other people in from the sidelines, and then they jump out there and they start running to the dance part. Yeah, it just, it's so the whole thing just makes sense to me, and it always has. I've never understood this idea of like, Don't share your agency. It'll make somebody feel bad. What about for all the people? That's,

Jon 1:15:01
that's that's a thing for me, I find in type two groups, when I share my success, there's some outright blatant hostility that goes down.

Scott Benner 1:15:11
Yeah, but it's helping way more people than the angry people. And I can tell you from my experience that sometimes those angry people, those people who see that and go you like, they basically want to be like, go to hell, you know what I mean? Like, I can't accomplish this, don't rub this in my face. You know how many notes I've gotten from people who said, it says something to that effect. And then six months later, I get a note from that same person who says, Hey, I'm so sorry about the angry note I sent you six months ago, my a one C 6.5. Now, and I understand what you're saying, and it just rubbed me the wrong way at first, but I was in a bad place. It wasn't you it was me is basically what the what it says. And if you don't give people the opportunity to figure that out, then no one's going to figure it out. And sure, we might not save everybody. But isn't it better to? Isn't it better to help five out of 10 people than zero out of 10 people? You know, I just that just makes that makes common sense to me. So anyway, John, I want to ask you if there's anything else you want to talk about, because believe it or not, I'm trying not to make your episode too long. So people don't get scared away by the fact that you have type two diabetes. And yeah, long episode. So I know

Jon 1:16:20
you don't edit much, but I hope I've given of myself well enough to be of use to people. And I'm out here in the community. And I, it's a bless everybody who's might be listening to this, you all are really a blessing to me and part of my victory.

Scott Benner 1:16:37
No, that's wonderful. I just, I can't thank you enough for doing this. And I do believe you'll be back on. But I just really appreciate this, John. Also, it

Jon 1:16:45
was very good that I had to wait eight months or so to be here because my story wasn't well enough formed and didn't have enough substance. So I would say to anybody, you know, who is invited or has an opportunity use those months to learn your story. I guess if that's what worked for me,

Scott Benner 1:17:03
John, that's a that's a secret of the podcast that I don't really say out loud. But I know Yeah, the I'm, I don't use the word blessed very often. But I am blessed that people want to be on the show so much. I do record almost every day. And at the moment, now we're talking APR 12. I'm full for the year. And I'm and I'm going to have to open up 2023 Pretty soon, but I'm trying to wait into the summer a little bit. People sometimes are very motivated. They they you know, they get lit up by something, they learned something or they're seeing something and they want to come talk about it. They don't even realize they're not fully formed yet. And so the six months the six or so months, you have to wait to get on the podcast is the great time for you to compile, compile, compile. So you can tell me Hey, Scott, like you do a great job talking to people all these episodes are really valuable, etc. But part of that secret there is that I don't just let people on who have a wild hair up there button. Want to come on real quick. Like, and I'll tell you three, two I came in. Yeah. Oh, you were shot out of a cannon when you first like reached out to me. And I was super excited for you. But I was like, not yet. And

Jon 1:18:17
put a fork in it. It still came out what

Scott Benner 1:18:19
Yeah, and maybe I'll tell you twice a year I log on. There's no one there. And I go, Okay, fair enough. I made him wait six months. I like that, too. Yeah, but But and then I just added I just spend the time editing. But I mean, there's no shortage of people who want to be on the podcast. And because they have to wait. And they get to, just like you said, they get to really firm up their ideas. That's why you get a good conversation. So I can't thank you enough again, for everything. For sharing yourself in that space. I think we're going to motivate more people with type two diabetes to to see the light for themselves. And and I think you're going to be a part of that. So thank you very, very much.

Jon 1:19:01
Thank you, Scott. And I don't know just keep doing what you're doing. And it's a tremendous honor to have been a part of the podcast and I really is and to share my little part of things and I hope that I this I hope this episode is not too embarrassing and is helpful to people.

Scott Benner 1:19:19
No, it's beautiful. It's a it's a really beautiful thing you did so thank you

I'd like to thank John for coming on and telling his type two story and remind you that if you have type two diabetes, I'd love to hear from you. I also want to thank Dexcom makers of the Dexcom G six and Omni pod makers of the Omni pod dash and the Omni pod five, go to dexcom.com forward slash juicebox or Omni pod.com forward slash juice box to get started Today where to find out more about their offers, or just read about their products. I want to thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast

actually, I guess if you want to find out about that Facebook group that John's in, it's the Juicebox Podcast, private Facebook group. It's called Juicebox Podcast type one diabetes. Go check it out.

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