Scott Benner 9/28/22 Scott Benner 9/28/22

#762 Artic Driver

Saxon is a UK based truck driver with type 1 diabetes.

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

Scott Benner 0:00
Hello friends, and welcome to Episode 762, an episode that was almost called BJ in the bear, who remembers Greg Gaffigan. And that charming chimpanzee

Saxon is an adult living with type one diabetes, and he's a truck driver, which I find compelling. It's a crazy job with a lot of demand. And I thought it'd be interesting to hear about a type one who does such a thing. Hopefully you'll think the same thing. While you're listening to Saxon and I speak. If we should say something about you know, like medical stuff. Try remembering 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 is everybody holding their arm up next to them right now and pretending to pull down on the air horn. Remember that when we were kids, the people do that anymore. And I don't have an air horn sound effect. While you're listening today, please consider going to T one D exchange.org. Forward slash juicebox only do this if you're a US resident who has type one diabetes, where is the caregiver of someone with type one. But if you are those things, and you go to that link, all you have to do is fill out the survey and complete it. And you've supported me, yourself and other people living with type one diabetes, T one D exchange.org. Forward slash Juicebox.

Podcast this show is sponsored today by the glucagon that my daughter carries G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by Ian pen from Medtronic diabetes, not interested in insulin pump, but you'd like some of the functionality that they offer. You are looking for the in pen, check it out at in pen today.com Do not forget to check out touched by type one.org great organization helping people with type one diabetes, they're doing more than I can tell you to be perfectly honest, it's just they have a lot of what they call irons in the fire. They're doing a lot of great things for people with type one, all they want is for you to know about it. So head over to touched by type one.org and see what they're doing. You can also find them on Instagram and Facebook. These are other places that you could follow touch by type on it. Go ahead and do it. What are you busy, you don't have time, the phones in your hand right now don't act like it isn't touched by type one.org Get going?

Saxon 2:42
When I'm Saxon. And I suppose I applied to get on here when I saw a post on your Facebook group asking if anybody has any crazy jobs or hobbies. And I thought well, I don't know if it's crazy or not. But people seem to think that truck drivings a bit much for them. So

Scott Benner 3:06
you threw yourself?

Saxon 3:08
I suppose so. Yeah.

Scott Benner 3:10
I appreciate it very much. Thank you least I didn't know, you know, imagine if you're taxidermy and field mice or something like that. And you have an army of them. You know, I have a hobby. I have an army of taxidermied field mice and one day and Okay, thank you. I probably would have said yes to that too. But I found truck driving really interesting. As I don't I don't know how anyone does it. I mean, you know, I'm saying like it feels to me, like, Okay, I could, I could go for a ride for an hour, two hours, maybe three and then I'm gonna need to stop walk around, I'm gonna get tired. There's that road noise that kind of lulls you into a coma. And trucks are just everywhere. I mean, I I imagine people know that. Trains, trucks, ships, that's really how we move things around the world. You know, I guess it could feel like you just order something from Amazon and it shows up at your house and a van. But

Saxon 4:11
it's I mean, that stuff doesn't just appear on the shelf. It doesn't

Scott Benner 4:15
just appear there, right? You've like this, this job that basically keeps everything going and seems difficult to me, but I'm gonna find out about it when they ask you some questions. So before we do that, how old were you when you were diagnosed with type one?

Saxon 4:31
So I was just a few months before turning 31

Scott Benner 4:35
Oh, no kidding. How am I now?

Saxon 4:39
Or next week? I'll be 34 Oh, this

Scott Benner 4:41
is pretty recent for you, though. fairly recent. Yeah. Hey, you've been driving your adult life.

Saxon 4:49
11 years now as a truck driver.

Scott Benner 4:51
Okay. Okay. So you were entrenched in your job when when this happened?

Saxon 4:56
Well, yeah, sure. And a few years back I Well, when I first started looking on some forums about training, I was saying even then, so 11 years ago, I would have just lost my right to drive trucks altogether for being on insulin.

Scott Benner 5:14
So 11 years ago, when you were thinking about getting this job, that was a, when did it stop being?

Saxon 5:21
I'm not quite sure when it actually stopped. But it was certainly a concern when I when I got diagnosed. And it was a couple of weeks time and two or three more weeks after diagnosis, when finally I saw one of the specialist doctors we have here and it says no, you can still drive until we tell you that you can't it, you know, it's okay. Now you can live a normal life, so long as you look after yourself. Oh, that's

Scott Benner 5:46
so that's interesting. So after you're diagnosed, you're only remembrance of this rule is from when you first got the job, probably six years prior? And were you concerned that you were going to lose your job as well as get diabetes?

Saxon 6:00
Well, yeah, of course. And I thought, well, this is the only way I really know how to earn an amount that I'm self sufficient on. I'd have to completely retrain, what the hell do I do? I've got a mortgage to cover and all that, you know, it's, it's a little stressful. And in the meantime, I've also been told that same time, they said, I can still do it, that I also then couldn't do it for at least a month until I could show stable sugar readings.

Scott Benner 6:28
Well, that's a motivator, I guess.

Saxon 6:31
Yeah. Well, it gave me time to learn. But it's a bit ridiculous in that you can still drive a car, you can drive a van or whatever, up to three and a half tons. But anything bigger than that you're not allowed to drive until the doctor says that you're stable enough.

Scott Benner 6:49
Do you drive a tandem truck?

Saxon 6:52
Oh, you mean with a

Scott Benner 6:54
trailer? The trailer? Yeah.

Saxon 6:55
Yes, yes. We call them Artix. Here, I think you call them a semi don't you over there.

Scott Benner 7:00
Semi tandem yet? What did you What do you call it? Arctic? A RT?

Saxon 7:06
C? Yeah, because it's articulated, or whatever.

Scott Benner 7:11
Gotcha. I was trying to find the connection to the cold. And I was like, I don't see it. But that makes sense. So over the road, local, how far of distance do you drive in the course of a day?

Saxon 7:29
Ah, I mean, the job that I have now is largely going into central London and back certainly, with a tower crane company. So yeah, it was a lot into London. It's about two and a half hours away from where we're based. Okay. But then the other day. Well, I had a whole weekend driving up to, like, halfway up Scotland and back. So that was probably a 500 mile round trip. Okay. I across the course of three days.

Scott Benner 8:03
And you sleep in the truck?

Saxon 8:05
Yeah, yeah. Lucky me.

Scott Benner 8:08
We, when my son was very young, there was a gentleman that coached his like local sports team. And he was in a what we would call an over the road drivers. He was gone for days at a time. And he would drive up and back from New York to Florida, over and over again.

Saxon 8:27
And yeah, that sounds like a long way.

Scott Benner 8:29
Yeah, it's terrible. I can tell it took a toll on him. Is there? I'm gonna ask you such a crazy Well, is there a lot of drug use in in truck driving? Like, how do people stay awake that long?

Saxon 8:42
Ah, I honestly, I don't know. I mean, where I work. Now we have drugs testing anyway. So it's not too much prom. For us. There probably was a lot before. But we have a lot of regulations. And we've got devices that record all our movements, to try and restrict us getting overworked and therefore not getting so tired. Okay? Although you talk to some of the older drivers and those because it used to be like a wax disk in attacker graph that would just like scratch a graph on to show your movements. And they would always cheat them by putting a magnet on it, stop the needle actually moving or something like that. So they're often cheating because they got to make more money that way. And of course, then work like almost an entire day and say that it was better back in that day. So you

Scott Benner 9:35
could say that you weren't driving when you were and then yes, accomplish your task and skip the safety regulations. Oh,

Saxon 9:43
yeah. And then make more money because you've got another job and which is going against competition law and all that stuff.

Scott Benner 9:51
It's interesting because I mean, time is time, right? You know, like, you can't How fast can you possibly drive But the actual task of keeping the truck on the road? It's is it? How technologically advanced? Are the trucks to this point? Do they have Lane Keeping? Do they did they do anything that helps you or are you constantly keeping that truck in between the lines,

Saxon 10:20
while mostly it is still down to the driver to be in control of the vehicle, keeping it but obviously between the lines itself, but the the vehicle I have does, it looks to make a noise, if anytime you get near the white line, it will just cut out the stereo and your lovely voice that comes through the speaker just disappears. And it's replaced with a rumble, which is very irritating as a lot of the time. It's actually it's wrong. You know, the sun could be reflecting off of a puddle. And it will think that that's the white line you're getting there. So this thing's there to try and help with the attention. They call it Driver Assist. But I think it's more driver annoy. There's other bits about though, which are i I've gotten to like because it's built in the Mercedes truck that I have will adjust speed for corners as well. So there's a lot of a lot of corners going through the country back towards the airfield where we're based. And I can just use the cruise control. And it will speed up slow down for all the corners as we go through. And I just need to just I suppose just pay attention and turn the wheel. But it will do all the speeding up and slowing down the braking. coasting up to the corners and the junctions it's it saves saves a lot on my right foot. And because it's automatic, hopefully will reduce me having one extremely athletic calf. And the other one not looking quite so to find

Scott Benner 12:04
that big, big strong right leg of yours. Yeah. So when you when this going back to when it happened, your diagnosis was there. And they give you this month, what are you learning to do with that time? Are you injecting insulin? Is it a meter? Like what do you do? It's only a few years ago. So what did they give you?

Saxon 12:27
They started off. So I received the meter. And I was given Novem mix 50. So as a 5050 mixture. And I was just told to take so many units at breakfast, so many units at dinner. And just try and follow some guidance as to what to eat, which I later learned was probably more advice for type twos managing on diet without insulin. Because it was very hard to apply to say cereal, and then say a beef stew with dumplings that just did. There's just no flexibility with it. But within a couple of weeks when I was back at the clinic, and I said that, well look, I don't really have a schedule with my job. What am I supposed to do with this mixture? You know, I'm taking it in the morning. But if I start at three and I don't get a chance to actually have any breakfast for some hours, you know, when am I supposed to take it? And should would you be interested in the Basal Bolus system as well? What's that? And that's when I was then given some Lantus and Nova rapid and, and to sit, you know, take so many into Lantis. And here's your rapid we recommend a unit for 10. But just start off with four units for each meal and see how you go. You know, if if you said patients like this, because if you want to have some pudding as well, you can just take a bit more, which you can't really do with the mixture. So yeah, I've been on that. But I found Lantus to be very frustrating in that. It was sort of peak about five or six hours in and then just tail off and I wasn't really quite sure. The best way to adjust for that. And I have recently been given a pump, thankfully about seven months ago now. So kind of learning all over again.

Scott Benner 14:33
Yeah. So you went you went about did you go about three years with Atlantis? Yes, yeah. Yeah. Was it? Was it your finding that it just didn't last 24 hours and it also had times where it worked more aggressively than others?

Saxon 14:49
Ah, yes, pretty much. But it was also I don't know if I'm just very sensitive to it or what it is, but they're just comes a time where suddenly, I just do not need as much as I've been taking. And it but it's in you for the whole day. And all you can do is then eat your way out of multiple lows. So I'm one day diving into a garage to buy, I just bought a four pack of chocolate bars. By the end of the day, I got through the entire packet, I hadn't dosed for a single one, and I'm still struggling to keep my numbers up. You know, and it's just like waiting until the evening work. And then finally, put in a smaller amount of Lantis. And hopefully try to get it right,

Scott Benner 15:38
ya know,

Saxon 15:39
and it's so nice to be on the pump. Now that I'm going oh, it's a bit much at the moment. Let's turn it down. And you see change in a few hours.

Scott Benner 15:46
You said two things that are really interesting. So the one was that, in the beginning, the doctor said to you look, it's one for 10 Unless it's not to start with four units and then adjust. They give you a lot of freedom to make that decision on your own. Right. You felt like that was your job to make that adjustment? Yes, yeah. Not like come back, like not stay low for three months or high for three months and come back and see me again.

Saxon 16:12
Yeah, yeah. In a way. So I think was the specialist nurse who told me about that stuff. Yeah, it was like, yeah, here's some rough guideline Dryden, see what works. But then when you do go in, and they look at your numbers and go, Oh, maybe try a bit less? Plan your meals a bit better? I'm trying I really am. Yeah, I know. You don't like to see the lows? No, they do. I?

Scott Benner 16:41
Did you spend a lot of that time eating those lows away? Or did you figure out to change the Lantis?

Saxon 16:49
Ah, both. I'd say. It took me a while to realize that when I would normally say beyond maybe 21 units of basil for the day, that it would eventually settle in at 14. So it was like a third of what I was taking. So eventually, it took me what I figured out that roughly, that was the ratio, I was on like 14 or 21 units, but it did take me a while to get there.

Scott Benner 17:19
Okay, 14, are you

Saxon 17:22
so you got two basil profiles in the pump? And at the moment, so we've got one on 14.4 and the other one on 19.3? Yeah. And it's the for the day that is so that's how many units for the day.

Scott Benner 17:39
What's the how does that shake out? Like is the 14th while you're driving, and you're sitting still on the 19th? When you're moving around more? Or excuse me, vice versa?

Saxon 17:49
No, it seems to be more perhaps if I'm fighting off a bug or if I've been given you know, a vaccination, sometimes, I can't really quite work out why, okay? It just is one or it's the other

Scott Benner 18:05
day, but you don't notice a significant difference when you're just sitting and driving all day versus when you're up and around.

Saxon 18:12
For that, yeah, I can do. Typically, if I've obviously had a meal, I need to try and remember to maybe not eat quite so much. But that's that's a tricky thing I find particularly with work. If if I'm going to have something to eat on them on the road for say, an hour and a half or two hours, I don't want to take a reduced amount of insulin because I will then get really high. But then when I get to the site, I've then got to be active, taking all the straps off the load running around getting freeing stuff up. And at that point, I'm then being really active. So I don't want too much insulin. And that's quite a hard thing to balance. And I'm trying to work out the right amount to say do a temporary basil, which obviously previously I couldn't do with Lantus, right so that was just scuffle load of biscuits before I get out the cab.

Unknown Speaker 19:08
How many stones sometimes it works?

Saxon 19:12
Stone up. Didn't think Americans did stone we put on my 1112 That's

Scott Benner 19:17
funny. I don't I just was trying to be ready because I thought if I asked you how much you weighed, you'd have no idea and pounds but I noticed about 100 kilos. Oh I see oh, let's see everybody we're you're on 150 pounds 155 What do you

Saxon 19:35
sell? I don't really work in pounds and there's some buying beef mints. Then it's one

Scott Benner 19:43
I'm gonna figure it out. We're gonna figure out together how much you weigh

Saxon 19:48
into metrics quite frustrating. You know, I was working through a recipe earlier and it's it's clearly American recipe because there's cups for this and cups for that and it's our please just deal on weight, not volume.

Scott Benner 19:59
How many kilos Did you say you were

Saxon 20:01
about 7575? So

Scott Benner 20:03
you're about you're about 168 pounds somewhere in there. Okay, just so everybody can have context because your basil is it's a little light for your weight, which is great. You know what I mean? Like, it's it's good. Actually doesn't matter much. It just surprised me a little. It was a little it was a little light for your weight. I don't know why it's hit greatest. What do I care how much basil you use. But I was just trying to get that straight in my mind. So because at 19 a day, you're not quite one an hour at fortnight, and you know what, 14, you're more like, what, like point six an hour or something like that?

Saxon 20:44
It's currently on? Yeah, point six, two at the moment. Okay. I do prefer it when I need more, though, because it doesn't seem to my numbers don't jump around as much when I'm less sensitive.

Scott Benner 20:58
Okay, so when you're when your Basal is a little higher, you see more stability? I think so. Yeah. When your Basal is lowered? Do you adjust your meal ratio and make it a little heavier or no? Ah, I

Saxon 21:11
mean, that's another tricky one. So I've heard you say before, you've heard from other people that it's that they either need so much, or they need another amount, until they don't. And in between, it's just chaos. And that sometimes is how it feels like sometimes I feel like I need to lower the Basal because I can see on the graph that I'm just drifting on, like, trending down. So then you try and have maybe a little less of a Bolus. And you just go screaming up straight up. So is that what what do I need? Do I need more or less than clearly, I need less Basal but more Bolus, right. And there's always a few days of it settling in. And then when you finally figure it out? Yeah. And maybe sometimes I'll see I'll get a day, maybe two days where I'm 100% in range, and it's about to change.

Scott Benner 22:03
Like, this can't last forever.

Saxon 22:05
It doesn't know. Yeah, like I'm, I'm really looking forward to getting the pump integrated with Dexcom. They can't bring that quick enough, I don't think.

Scott Benner 22:19
Yeah. And you guys are usually Ha, you guys are usually a couple of years behind when it comes here. Right? Is that how it?

Saxon 22:29
I guess so? I guess so. I went when I went through the pump process, and they showed like several pumps. I think they had a an Accu check. And Donna and those are under Medtronic. And and then they said they're having an IP. So med one come along, which I don't think you have over there. No. So what about the what about the T slim as our we don't currently have access to that within within the trust here? Okay, that's a shame because that's the one I'd really like. And I found out at my six month review that they now offer it I really. So I'm on the IPS omega, which they bought the bought access to the tandem algorithm, but they haven't got it approved yet.

Scott Benner 23:24
Okay. And if so mad is it's not quite I'm trying to remember it. It's not quite tubeless. Right. It's like a short tube on it. Ah, what am I?

Saxon 23:39
I'm not sure. I mean, the tube I've got I think is 60 centimeters.

Scott Benner 23:44
Okay. Yeah, I'm lucky.

Saxon 23:46
So a couple of feet.

Scott Benner 23:48
So yeah, so you do you do have like a pump with a with with tubing on it and then into an infusion set? That's the estimate.

Saxon 23:56
Yes, I got it. Yeah. It's a very, very small pump. It's like half the size of an iPhone.

Scott Benner 24:02
You guys have Omnipod there, right?

Saxon 24:05
Yeah, but my trust seem to think that that's only for children.

Scott Benner 24:09
Really? That's interesting. I mean, do you use more than 200 units of insulin and three days?

Saxon 24:15
She said, No, I don't. Right.

Scott Benner 24:17
Right. Yeah, well, then it's for you, too. And they're gonna have their algorithm too. I mean, it just got it cleared by the FDA here in America a few weeks ago. They're doing a limited release at the moment, and then it's gonna go wider soon. So I don't know when that puts it in Europe, to be perfectly honest. But I mean, I think you're right. I think that algorithms that talk to your CGM and your pomp are a big deal, you know, because all this stuff you've been talking about for the last half an hour. A lot of it isn't going to exist in your life day to day when this algorithms making that decision. It's it's gonna, it's gonna lift a real burden for a lot of people. But

Saxon 25:01
yeah, I'm really looking forward to it just to just free up some headspace not just focus on other stuff. Not that I have to think about too much while I'm fumbling along the road.

Scott Benner 25:13
Well, what is it like, though? I mean, does it add an extra level of, I don't know, like, concern that you're constantly driving. I mean, when people have type one diabetes, they usually put a lot of effort into making sure that their drives are well protected. You know, they know what their blood sugar is, before they start, they check while they're driving. They have stuff with them all the time. But when you're driving all day long, how do you manage that? Do you ever have to pull over to to help yourself? Or is it something you can keep going? Pretty well.

Saxon 25:46
Um, so we can only drive here within two hours of performing a blood glucose check. I think they recently did approve CGM for driving but not a large vehicle. So even though I do have a Dexcom, I still have to pull over and prick my finger for say, every two hours of driving.

Scott Benner 26:11
And that's a vehicle to.

Saxon 26:15
So I could drive my car on just the Dexcom as long as I wear it in an approved place, okay. But then I get better results with it on my pec than I actually do on my stomach or the back of the arm. So yeah, I might as well just prick my finger anyway. But yeah, I have the rules that are given to me by the driving agency that we have here. And so if your glucose is less than five, which I think is 90 over there, isn't it, you know, have a snack, and it's less than four, then you have to retest or correct with some sugar and test again. And once you've been back in range for more than 45 minutes, then you can get going again. 40, which is incredibly frustrating when you get to 3.9.

Scott Benner 27:09
And then you have to wait 45 minutes?

Saxon 27:12
Well, it's an hour really, because you've got a correct test again, and then 45 minutes after, after that you can go again. And that's yeah, it's very frustrating. How on time how strict

Scott Benner 27:22
are the rules? Like if you got caught? Not following them? Would you get a ticket? Would you lose your license? How would that work? Do you know?

Saxon 27:33
Um, potentially I could lose my license, you know, being control of a 44 ton vehicle with? Well, it would be classed as being not fully in control of the vehicle, I suppose. It's they were set out as a dangerous weapon in the wrong hands. And yeah, they're worried about if you're low, it's affecting your concentration. And let's say that it takes at least 45 minutes for your brain to recover from a low which I imagine if you're prior to being able to keep yourself in range with CGM that anytime you got below five, he probably did feel absolutely rubbish. And therefore we enter a proper hypo. Yes, you did need to probably stop because I do try to keep myself as in range as possible. I actually feel okay when I'm around the for just a little bit less, you know, just just a tiny bit less. But obviously the clinics will tell you that they're worried about you losing hyper awareness. But I thought I can function just fine. I've only had one occasion where I did think yeah, I really do definitely need to stop. I'd just helped another driver who's loaded. All his straps came loose, loose when his loads shifted. So I just helped him strap it up, got back in the truck and start to drive down the road again. And I felt like the entire cab was shrinking around me. And I just looked at my watch to see the see the number like oh, okay, yeah, that's dropping fast. Now this is what it means when they say you might act drunk or feel drunk with it. And so I just scuffed a load of jelly babies and orange juice and I'm pulled over tested and was like Oh 2.2 Yeah, that that felt low. Wow, it didn't enjoy that.

Scott Benner 29:40
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Saxon 33:04
Yeah, yeah. No, I didn't enjoy that.

Scott Benner 33:07
So that just activity of jumping around that truck and pulling those straps and re sensing that load made you low.

Saxon 33:15
Yes, it did. And then I was struggling with lows for the entire day. So it's just one of those moments where my body's decided that it doesn't need as much insulin but it never tells you that it's going to have that kind of day you just have to work it out for yourself. Well

Scott Benner 33:28
yeah, you don't know the kind of day you're going to have but Saxon I would bet that it's the activity and the you probably kind of activated the insulin that was already in you so I'm I'd be surprised if it if it isn't true that when you're sedentary and not moving that you need more insulin to keep your blood sugar stable at a certain number than you do when you're active.

Saxon 33:49
Oh, I wouldn't disagree with that. Yeah, yeah. So

Scott Benner 33:51
I think you just jumped out started moving around that other truck and you got you caught alo your prompt did you have active Do you remember that moment? Did you have active insulin had you eaten in the hours prior to that?

Saxon 34:03
About Yeah, probably about an hour and a half before so yes, admittedly the rapid would have been peaking at that point. Right you know, initially I was just thinking of trying to keep the other guys safe because he had to his straps are dragging on the road so I had to just try and keep them safe whilst whilst that was happening. But as I say later on in the day, you know, just driving around and like oh creeping down again and again and again.

Scott Benner 34:30
It just stopped then after that.

Saxon 34:33
Yeah, I'm for a few days that I was on a lower amount of lattice again.

Scott Benner 34:40
But but now the moves around Yeah, but now the pump has made all that easier for you. Yeah, easier. Yeah. Not that easy, just easier. Well, I'll tell you,

Saxon 34:51
I knew wouldn't be a fixed and the doctor did say to me when when I was approved for it that he that I would not get better. results than what I was already achieving with pens. Just that I was less likely to burn out from the effort, which they seem to think I'm putting into it. The very wide I get stressed with the effort and it's like, no, it's there is a number, correct it move on.

Scott Benner 35:17
Yeah. Well, so you said something much earlier in the conversation that I related to a lot. The idea when you're injecting a slow acting insulin like Lantus, you know, lever meritocracy, but whatever you're using, that it's in there, and now it's in there, and you can't do anything about it. I used to have that feel at least you're an adult, right? Like, we used to inject that into my daughter when she was two and three and four years old. And it was the I thought that was almost the worst part of it is that you had to put it in, but you weren't sure if you were going to need it. And then you had to work backwards from it. And you know, at least you can, you know, tell yourself, I have to eat this and you can do it like you should try tell him like a three year old that's not hungry that they need to eat something because they they look right through you. But But it's the that you just brought back a memory when you said that that really sticks with me that I felt that way at the time. Like every day, you're like, I'm gonna put this in. And I hope we need Yeah, you know?

Saxon 36:18
Yeah, well, I mean, watching my mom trying to feed my brother and sister all those years ago was that look like hard enough work without the extra complication of managing diabetes for your daughter as well?

Scott Benner 36:30
No kidding. So are there other autoimmune issues in your family line? Or does anybody else have diabetes?

Saxon 36:39
There is no diabetes that we are aware of at all in neither my mom's or my dad sides. I've heard you mentioned possibly that bipolar might be a thing that linked with it. We suspect that my grandma might have had it. But I mean, she died in 91. So I think back then they just call it hysteria. But that's about all that I'm aware of in terms of anything autoimmune in the family.

Scott Benner 37:10
You know, I have to admit, when I start having bad days, I'm going to start saying I have hysteria because that sounds like a nice way to describe a day that's gone wrong. What's wrong with you? I'm a little hysterical.

Saxon 37:25
Sounds like good plan. Not today.

Scott Benner 37:27
Any thyroid stuff?

Saxon 37:29
Not that I've heard of.

Scott Benner 37:30
Okay. So it's fair to say that you were completely shocked to have diabetes?

Saxon 37:37
Yes, absolutely. I think we've, well, the only thing that makes sense to it was earlier on that year I had flu. That's, that's the only thing I can really see as being a trigger for it. Because for about three months, I just had absolutely no strength. And then come the summer, I start seeing a few other symptoms, which I can now relate to it. Dealing with a little bit of thrush, and then later on, started losing weight. And then I was like, Oh, I'm in the thick of that. I went out for a run. I thought start running. And that night, I had to wake up five times to go pee in the light. Well, obviously, it's not actually related. I don't think but, you know, that kind of put me off running a little bit. And then it's like, okay, every hour, I'm driving on the road, I have to pull over what's going on? And yeah, it was it was quite a shock. For me. Even in the hospital. The doctor was asking me like, Do you have any pain in your stomach? If you've been throwing up at all? No. Are you? Are you tired? A lot? Yeah. Sometimes I'm up at 1am to start my job. Okay, you pick it up? Yeah. I like coffee. You can write so many of these things off. Sure. But when you when you really have all the symptoms, they're like, oh, yeah, they're all there, aren't they? Yeah, this makes sense.

Scott Benner 38:57
The thrush is like a yeast infection in your mouth. Right?

Saxon 39:01
I actually I had it more in other sensitive areas. Yeah. And so there was a few a couple of like conversations I suppose with well, my now ex wife but so that I don't know what's going on here. You know? Yeah, maybe not tonight if you don't want to catch us, I don't know where it's coming from. You know, and I was seeing the doctor. I went to the local doctor a couple of times and I was getting some creams and then one day I went and so it's still not going away but I now feel like I'm also pulling away my weight and I'm ah, that sounds like diabetes. Let me go get the meter like scuze me

Scott Benner 39:37
Wow. So the thrush alone didn't get him but you mentioned the urination. He went right to diabetes. Yeah, because he saw the high blood sugar because the yeast infection Yeah.

Saxon 39:49
Why well as the weight loss as well in the

Scott Benner 39:51
weight loss, how long did it take you to think to diagnose it a couple of months.

Saxon 39:57
Ah, I suppose from actually seeing Dr for that yeah, probably was a month or two. But I think I can trace symptoms back about five or six months.

Scott Benner 40:09
Wow. That's a long time. It's not just not something you expect as an adult, especially if you don't have in your family. And it sounds like you're onset might have been a little slow. Do you remember what your blood sugar was? When? When he got that meter?

Saxon 40:25
Well, they when they tested me in the hospital, it was 29. Okay, no, I've quite got the conversion for you. There.

Scott Benner 40:34
I got it. It's about 522. For hear okay. Yeah. Which is high, but not the highest number I've ever heard.

Saxon 40:42
How did you feel? I've heard some high numbers on your show. Yeah, some

Scott Benner 40:45
sometimes you're like, wow. But how did you feel at that point? The tiredness was it? Was it getting worse? Or was it just that you were Yeah, yeah. Yeah, I

Saxon 40:57
suppose say. I mean, I was quite happy to get myself into bed at eight o'clock some nights. And then once I started taking the incident was like, oh, yeah, yeah, I've got the energy back. But it's you do get used to feeling rubbish. And you, you just get on with it. You adapt.

Scott Benner 41:13
I'm gonna ask you a question. It's none of my business acts. And so you can tell me to go ahead, screw off. But did the diabetes have anything to do with the end of your marriage?

Saxon 41:23
Um, some people would think it like that. But no, I think I can honestly see patterns in her behavior long before that, which led up to us getting divorced. Okay, was it but maybe it was a little bit the end? Well, when we split, she told me not to change. Nope, don't change who I am.

Scott Benner 41:47
Okay. Well, that's good. Yeah. Don't just not for me, but I gotta go. How long? Yeah. How long had you been married?

Saxon 42:01
About five years at that point. We've been married. We've been together about 10.

Scott Benner 42:06
Okay. All right. Well, I'm sorry, that happened. I was just I felt like I felt like I should ask.

Saxon 42:12
No, no, no, that's, that's absolutely fair enough. But you know, I'm here to be honest. But it's, I'd say it really worked out for the best in the end. Obviously, we weren't for each other. And I then met somebody. I'd say as far fire lovelier pretty quickly afterwards.

Scott Benner 42:29
How do you meet a girl when you drive a truck all day?

Saxon 42:31
Well, that's a tricky thing, I suppose. Luckily, I do four days on four days off. So I'm only working half the time so I can actually meet people. But you know, in this day and age, it is. Tinder, I suppose, isn't it?

Scott Benner 42:46
Yeah. Oh, yeah. Swiping around. I gotcha. Well, that makes sense. Yeah. Well,

Saxon 42:49
yeah. I just said I'm not in the I'm not in the right place for relationship having just come out of the long term one. So you know, I'm just looking to meet people. And, and Natalie said to me, that she was about to go to America. So perfect. And two and a half years later, she's still here with me.

Scott Benner 43:08
Oh, you changed her plans? Yeah, look at you. That's, I see. You're, you're flexing a little bit there. Saxon. I see what's going on.

Saxon 43:22
Being honest, and nice, actually was something she wasn't used to. So there was a reason to stay.

Scott Benner 43:28
That's excellent. Oh, good. I'm glad for you. Is she is she very involved in your diabetes? How much of it? Do you let her see?

Saxon 43:36
Oh, let's see the whole lot. But she's not. She's not supposed like involved in terms of having to take any care. But she's a she's a nurse and she has found it very interesting. And has given a lot of confidence, seeing what I do. In terms of actually then treating the patients that she has. Okay, so she's, she's not scared of the of the insulin

Scott Benner 44:06
anymore. Wow. She works in a hospital.

Saxon 44:09
Yes, yeah. So when I met her, she was a critical care nurse. So she should manage people with DKA newly diagnosed or having other problems, various other types of insulin needs. So I think somebody would say, due to a brain injury, the body was or the brain wasn't telling them to release the insulin. So yeah, so it's things like that.

Scott Benner 44:39
Okay. You know, I will tell you that I had a fair amount of stress just now when I said she works in a hospital because I couldn't decide if I should put the in front of the in front of hospital or if I because you guys guys just say hospital, and I didn't know what to do and I panicked.

Saxon 45:02
Yeah, I'm not too sure what the right answer actually is here. Do we say go to a hospital or go to the hospital? You know, sometimes the the north of England, don't use the word there. You know, do you want a cup of tea?

Scott Benner 45:16
I'm just telling you, it's shot me into a panic, I could. So if you're me, I have this weird, like, skill or life thing that happens to me, where I'm a little aware, when I'm recording this podcast, I'm a little aware of my next like, eight words before they come out of my mouth. And so you're talking and I'm asked, I know, I want to ask if she works in a hospital. And I can just I can hear voices in my head fighting going. Don't say the US say it. Don't say.

Saxon 45:47
That sounds a little tiring at times.

Scott Benner 45:49
I was just like, I don't want to like I don't know, I, you know, it's stupid. Doesn't matter. But I've just interviewed enough people from, you know, from England, where I'm just very aware of it. And, and I still can't get it right. So I knew I whatever. Cannot we know what you mean? Thank you. Can I ask you a question that there's no way prior to two weeks ago, I would never would have asked you. How close do you feel to Ukraine right now?

Saxon 46:18
Oh, ah. Well, I don't know. I mean, I'm in a country where half more than half of them decided to get away from anything to do with Europe. So I'm not really too sure. But I doesn't sound nice. What's happening over there.

Scott Benner 46:34
But but your own personal safety? Do you feel close to it?

Saxon 46:40
Are there I mean, I suppose, like the far east of Europe to us, but who knows how far Putin might decide to reach? But we don't seem to be doing much to, to aid them for some reason. So maybe we'll be okay. I'm wondering if our politicians are a bit too scared to really provide proper assistance. Now, I think we're arming the Ukraine, but we're not sending troops. So I don't

Scott Benner 47:12
know, that seems to be how they're all handling it. I just wondered if because you're attached. And you're there. You know, like if it felt like a regional conflict that you have no real concern about reaching you? Or if it feels different? Because it's closer. That's all I you know, I mean, from here. It you know, it's horrifying. And concerning, obviously. But I don't feel like it's going to be here anytime soon. I just didn't know if like the distance made it different for you. But it sounds like you are having a fairly similar experience to the one I'm having.

Saxon 47:49
Yeah, I don't really know what to feel about it. I'll be honest. You know, I have a friend from Estonia. And at some point, I'll find out what what she thinks about it, because they're only they are another country or to a long from from Ukraine.

Unknown Speaker 48:04
Yeah, that shows more

Saxon 48:05
concerning for her and the family that she has back over there, having previously been a part of the Soviet Union.

Scott Benner 48:12
Wow, it just all seems you got that little tiny bit of water, but then I gotta help you.

Saxon 48:19
I mean, it's helped us but before if, you know, for those people who can't let go, the Second World War,

Scott Benner 48:23
slows them down a little bit having to get on a boat and something like that. Oh, my gosh, do you see the world? Like, very does the internet? What am I? What's my question? Like? Does the internet make everything seemed local at this point? Like, do you have more understanding of the United States, for instance, in places that are far away? In your 30s that you didn't your teens and your 20s?

Saxon 48:52
Um, possibly, I try. I try and stay off social media, because it's just, it's just saturated with rubbish. And I don't like going on there. And the news is just too damn depressing. Right. So I have to admit a lot of what I pick up about the world these days, I actually get from here and your guests, for wherever they are. Because at least getting somebody's own personal story with it. But you turn on the news, and it's like, oh, like for a couple of years. It was Brexit, more Brexit, you know? And it's like, Oh, can we have something else? Oh, we're talking about COVID. Okay, now that's getting boring now. Can we talk about Brexit again? No, that's still bad. Yeah, there's just been very little to make me feel like I want to tune into the news. I wonder I thought I'll just find out what's actually going on in the world. Again, after like months of not listening to the radio. And, oh, Stephen Hawking died. Oh, that was tuned in now.

Scott Benner 49:55
I'm sad. I was just depressing. Yeah, I know. We were on a car trip. The other day, and my wife said, Put the news on, I want to hear about Ukraine. And we listened for, you know, 10 or 15 minutes. And I don't know, a couple hours went by, and she's like, put it back on again. And we put it back on again. And I realized they were just saying the same thing. And then I start paying attention at the top of every hour, they were just making the same statement, and then having the same conversations off of it over and over again, I said to her, I was like, There's no new news here. Like they're just, they're just re saying the same thing over and over, you know, so we,

Saxon 50:30
yes, 24 hours of news, but it's no longer new.

Scott Benner 50:34
No, and he said it. My favorite part is that every time they say something, they go, this is breaking news. I'm like, Everything can't be breaking. It's like something I don't know, I just I agree with you, I I do my best to stay away from just medic mass market media news. And even like you said, like Brexit is a good example. You start getting involved in these like political discussions, you realize that you have almost no say in how this goes. And it's going to do what it's going to do anyway. And, and being twisted up in the, in the moment to moment of it really has no value to you. It doesn't make you better informed. It just sort of makes you you know, I think it makes you just kind of more nervous and anxious, honestly, about something. Yeah, no effect on.

Saxon 51:23
Yeah, I think I spent spent a day listening to like COVID updates and getting a whole bunch of stuff. And by the end of the day, I felt awful. And I'm gonna go back to audio books, podcasts, whatever, you know, let's get some music going on. Let's just stay away from the radio.

Scott Benner 51:38
How was that driving a truck during COVID? Like because you you travel a distance, then you have contact with people, I imagined that that change what happens when you get to a destination or do a pickup?

Saxon 51:51
Yeah, for a while that was that was definitely a different experience. You know, arriving at the site not being allowed inside though. In not allowed in a warehouse, they'd come out and meet you. As long as you've already masked up even though you're outside. Take your keys off you still but they go in a bag. You know, that hiring portaloos to be in the yard so that you don't go inside to use their toilets? That's yeah, that was That's strange. You know, not everyone is completely relaxed yet either. I yeah, in some ways, it was kind of nice, because you know, other places where they normally would take your keys and then sit you in a different room. You weren't allowed to stay in your vehicle. They stopped all that. So it was like finally I can take where I'm already comfortable with my own stuff and my food. Yeah. I don't really have to deal with that too much now. Because when I first got got in touch with you, I was part of the general haulage company and we were moving a lot of just various goods. And now I'm part of a crane company. It's we've just gotten a building sites. You know, just take take the crane, drop that off, leave. You know, it's not too bad. Now.

Scott Benner 53:11
Can you explain to people step by step how to pee in a bottle while you're driving?

Saxon 53:16
Um, I would imagine, you'd imagine, well, there's got a big enough spout. I personally haven't tried it because I don't want to get it wrong. And I have all over my seat. But I know, I remember one man saying he, he met up with a couple of where he met a couple of Irish drivers in Liverpool had a had a couple of pints with beginners of Guinness with them. And then they set off towards Dover to get on the other channel tunnel. And he said after 10 hours, he just had to stop and pee. And they just kept going. So obviously they've masked Yeah, yeah, I'll just pull over. I mean, now I have to anyway. Yeah, I won't do that.

Scott Benner 54:11
I imagine the wide mouth bottle is pretty much the it's the key to the whole thing. Honestly, right.

Saxon 54:17
I mean, there's times we okay, like you park up in a service station for the night and takes like three or four minutes to walk inside to the facilities. And it's chucking down with rain. You're like now I'm just gonna pee in a bowl tonight.

Scott Benner 54:33
Are there places that when you stop, like have shower facilities and things like that for you?

Saxon 54:39
Yeah, yeah. There are a few of those arounds. Not necessarily good, but they are available.

Scott Benner 54:46
Okay. Not something you would want to use on purpose, just more of a necessity.

Saxon 54:50
Yes, some of them aren't too bad, some of them but there's a couple of places where they're really nice. A lot of them are just about adequate One of the one of the private truck stops that we have, I don't think it's particularly good for the we have a payment system. So that you can just give you registration, the company is billed, the driver doesn't have to pay over money and wait for any expenses to come back. But because this company then takes a percentage, the truckstop has decided that to get that money back, they'll then not include a shower token with the parking. So we then three pounds to have a shower. But then you also have a ticket to put into the machine to give you so many minutes of water. And then when you press the button that I know, it's like at the swimming pools, you press a button, you've got so many seconds of water, and then you've got press it again. Well, the buttons and these showers pop out again within two seconds. And half of that water is coming out of the back of the showerhead and running down the wall. And it's it's no wonder a lot of people kind of get disenfranchised with I suppose this lifestyle is is a bit more of a lifestyle than a job. When that's the kind of treatment or care that you get for almost dedicating your life to

Scott Benner 56:20
Yeah, it's hard. It's hard work to I mean, it takes a lot out of you. I imagine there's you say you work for the f4 off but the first day must be recovery. Right?

Saxon 56:30
Hey can be yes. ticked off to say that a 15 hour day. Yeah, I tried to have the first day is just take it slow, man get some chores in the, you know, the day after. But yeah, it can be like that, you know, I've had times where I've had to be at work for three o'clock in the morning, on the first day, and then I've not got home till 11 o'clock on the fourth day. And yeah, that's kind of takes away a little bit of your weekend as well. But you know, both at both sides of

Scott Benner 57:00
that in a in a 15 hour workday. How many of those hours do you think you're actually driving?

Saxon 57:07
Ah, well, we're limited to nine hours of driving in a day. Twice a week that can be increased to 10. But usually it might be say seven, eight hours of driving.

Scott Benner 57:21
And I recognize that you're happy in your relationship. But I have a question you might have information about is the idea of Lot lizards. Is that something that translates to you a

Saxon 57:32
lot lizard?

Scott Benner 57:33
Do you do not know the phrase?

Saxon 57:36
I'm gonna assume from lat You mean like a parking area? Is this going to be do with like ladies of the night? Yes,

Scott Benner 57:42
it is. Is that a real thing in this world? From my movies,

Saxon 57:47
I've heard of it. I haven't experienced it. Okay.

Scott Benner 57:51
It's not it's not like, it's not like I made to believe in a movie where you pull into your parking spot and just you're swarmed by prostitution.

Saxon 58:01
No one one man did tell me that happened at a particular service station. It was just like, every 10 minutes, there's somebody knocking on the door, anything just go away. I'm desperate for sleep.

Scott Benner 58:11
Yeah, I can't imagine how exhausted you must be at the end of a of nine hours of driving. We. So we just drove to take art and to visit a school college she's considering going to, which I guess is a university in your mind. And it was crossed the country. So we kind of took it a little slow and easy. But by the time we got there, we had been in the car about 14 or 15 hours. And you know, with a couple of stops here and there for you know, restrooms and food and things. And we stopped at a hotel. And we were waiting at the front desk to check in. And my wife goes, Are you okay? And I said, is the room moving? Or is it me? Like you have that weird feeling like you're swaying but you're not moving? And if that makes any sense to you, maybe it does. But yeah, yeah, I found it very disconcerting. I don't normally drive that far in, you know, in a shot, so I don't know what that is. It just felt like exhaustion, but um, I'm not certain. A probably

Saxon 59:13
is if you're not used to concentrating for that long.

Scott Benner 59:17
Yeah, that's the hardest part. Isn't it? Just the paying attention?

Saxon 59:22
Yeah, fun. It can be like most days, it's, it's not too bad. You know, usually lasts like, Don't you get bored, but I just consider it more that I'm absorbing my choice of entertainment whilst I'm driving. The days when it's heavy rain, if it's really, if there's heavy fog, then I find it very tiring. Because then I'm really having to focus and try and peer through the weather conditions. That's a struggle,

Scott Benner 59:51
and you're moving heavy equipment. That's not that isn't that not like cases or boxes that can get stacked up and the distribution of weight is probably a little different for the stuff you're pulling to, right? Because the I'm kind of guessing about moving cranes around. But it sounds like it's not as stable as far as the the load goes.

Saxon 1:00:14
So it's not too bad. To be honest. If it is a heavy load, it's usually because of the ballast weights, which then just go on the deck. So that's kind of at least giving you a reasonable center of gravity. Stack a few bits on top, but you just, if you're not sure, if it's quite secure enough, put another strap over it, just get it down really tight. Yeah, sometimes they don't quite put stuff in the right place for you. And that more is has an effect on your, on the traction of your your drive axle.

Scott Benner 1:00:49
Do you learn a little bit Do you load and unload? No, I don't know. There's people there that handle the basically the packaging of the crane onto your truck. And then you drive it away?

Saxon 1:01:00
Yeah, yeah, in our yards. Yeah, we have the yard men operate the cranes, and they'll lift, lift the stuff on. And then we secure we take it to the site, where we then have the directors there who then do sort all the lifting off when they're erecting the crane or when the dismantling they're the ones who are putting it all on. And again, then we just secure it. But we're not actually allowed to participate in the loading or unloading of the vehicle. Just securing it and getting it there.

Scott Benner 1:01:33
Gotcha. Is it weird to stand there and watch other people work? Ever feel like you can like help a little bit like, oh, here, I'll get that like, just so they don't look at you like

Saxon 1:01:47
I mean, there's times like that, but there'll be loading stuff on. And whilst they're doing that I'm just throwing the straps over. So I'm still usually doing something. But yeah, there are other times if they're really struggling with taking the crane apart. You know, I can't get involved in that. And so I just sit there and I think I had one day in central London. I was there for 10 hours, and they still hadn't put anything on me. And it turned out Yeah, they were struggling to bash the pins out of the crane because they bent and flight USA after about 10 hours, they finally put a couple of bits on me. And then I just had to get out of London before my before my hours ran out for the day. But yeah, for a day like that. So I guess I'll watch another movie. I'll I'll go asleep. And I'll take some some Warhammer miniatures with me. I can just paint up in the cab while I'm waiting for them. Yeah, my job now involves quite often a lot of sitting around.

Scott Benner 1:02:42
No kidding. Wow. So you, you bring your hobbies with you even because you know you have downtime.

Saxon 1:02:48
Yeah, yeah. That's cool. Yeah, it's not bad. Some of the other guys say like, they knew that when they're on their third movie of the day that they really weren't gonna go anywhere.

Scott Benner 1:02:58
You start binge watching shows, and you're halfway through three seasons you like what is what is happening, right? Well, listen, does it pay? Well? Is it a good job?

Saxon 1:03:09
Where I am now? Actually, I would say yes, it is. It's maybe not paying quite so well, during the winter months because of the wind. You can't really lift much when you know when the storms are coming in. But yeah, I think I think where I am now is fairly good pay. And a lot of other haulage companies are coming up to meet that pay because they're they've been desperate to hold on to drivers lately,

Scott Benner 1:03:34
right? Yeah, there's the craziest thing I've seen here during COVID. Is that jobs that you used to think of as like, jobs that like teenagers would keep or you know, like high school students, stuff that was for after school is suddenly paying like, you know, $20 an hour. And I just feel like they can't they can't keep anybody so they just keep jacking up the pay trying to hold on to, you know, two workers. Yeah, you know,

Saxon 1:04:01
it's Yeah, yeah, no, I've seen a lot of that. But the last company I was in, they lost a load of people with a dangerous goods license. So they up to the bonus for that. And then the local drivers a whole load of them left. So they upped their pay. And then the national trampers they said, they're the ones who sleep in the cab for the week. Like five of them left in two weeks. So again, their pay went up. And the four of us that we're doing four days on four days off there we went, what about us? And I said, oh, there's a queue of people waiting to get in your trucks. We don't need to have your money. So I then heard about this other job with a crane company. I'll see you

Scott Benner 1:04:46
that's not true. Goodbye. Yeah. How long does it take to to train like if I if I showed up there in my mind, and I was like, I'm gonna drive these trucks. I'm gonna go do what's x and does I have noticed I'd like no training at all, how long would it take me to, to get the license.

Saxon 1:05:06
Um, I think it took me three or four months before in turn. So applying for the provisional category on your license, getting in the medicals doing the theory, having the first test was for just driving a rigid truck. So you know, like just one without, without a trailer. So then you can just go and drive one of those once you get your license to get the test back from that. And that was, I did a three day course followed by a test. Because you already know how to drive, they're just adjusting your driving style to a bigger vehicle for the size. Yeah, so that was just wait for the license to come back. And then get booked in to do the next category, which is to have the trailer on the back as well. So that was about three or four months, at the moment, because of COVID. Getting licenses back from the DVLA is as taking so long, I think like, because I have to have my license is on a one year restriction, because I'm on insulin. So every year, I have to submit renewal for medical grounds, see a couple of doctors in the meantime, I can continue to drive until I'm told otherwise. But I am having to say keep renewing the license. And last year that took nine months to get the license back. My my brother who is I think it's gonna be 19 this year. He he's applied for his provisional license to confer to start driving. And he he sent that off, I'm sure in September, he is still waiting to get his provisional license back. So at the moment, he is just stuck in the town that we've come from. You can't go anywhere yet. Yeah, I don't know if he wants to. But he doesn't have the option.

Scott Benner 1:06:58
He just can't. Wow.

Saxon 1:07:00
They're just taking so long to do anything. Right. And you can't get on the phone to them. It just says there's no one available. Thanks. I just sat through a five minute message to get to this point.

Scott Benner 1:07:10
So it's a nine minute wait to reset a one year. A nine month, nine month wait to reset a one year cycle. Yeah, that's, that's not working.

Saxon 1:07:21
Yeah, no, it seems like that. And there's I have another colleague as well. There was also type one, and you were submitted maybe a couple of weeks apart for our licenses. And they said right, okay, well, I'll do a bet with you. Whoever gets a license back first has to give the other one a packet of jelly babies.

Scott Benner 1:07:38
diabetes bedding, less fun than the other? Yeah, yeah.

Saxon 1:07:43
Do you usually get some a lot less trouble?

Scott Benner 1:07:46
No kidding, right. Do you when you submit that for reinstatement basically does that? Is that something you have to get from your doctor? Do you have to write down logs? Do you have to send them numbers? Like how does that work?

Saxon 1:07:59
Ah, so yeah, so I just let the DVLA know that I wish to continue driving, I wish to keep a category on my license. And then they say they send out a questionnaire and then there's stuff in there. Like, you know, ion insulin, have you had any severe episodes? And you're allowed one a year with help? You know, that's okay, any more than that? And then they really going to question your ability, you know, how many hypose Would you say you have, on average, you know, like so many a week or so many a month or hardly any? Have you lost any limbs, you know, all that kind of stuff. And then they say, oh, we'd like to get some more information. So we've arranged an appointment for you with a doctor. And so then the doctor looks through your, your meter to just see the last three months of sugars, just to show that you're not having too many hypose. And if you are that you're correcting them. And you think, well, you're here, aren't you, you're still alive. And after another like month or so of that form being sent off, they say we want some more information. So we've now arranged an appointment for you with an independent doctor. So I then have to drive another hour up the road friend of mine who got perfectly good hospital within 10 minutes. So I have to go to another hospital and see somebody there. Who does exactly the same thing. Yeah, looks through the last three months of readings, says yeah, okay. I asked you, I asked you a couple of questions about you know, do keep carbs within easy reach. If you do have a low, you know, what do you do then when do you feel a low coming on? Just write all that down and sends that off, and then you get your license back for another year. And then you've got to repeat the process. Yeah,

Scott Benner 1:09:56
that sounds

Saxon 1:09:57
thankfully. Yeah. Oh, We have already done it a couple of times so far, but I'm sure it will get tiring.

Scott Benner 1:10:04
Sucks. And I appreciate you doing this. I have one last question that has absolutely nothing to do with any of this. And if you think it's silly, tell me but in your mind, how do you think of the Beatles? Like when you think of Paul McCartney, do you think he's a genius? Who just like, do I think differently of him? Because he doesn't come from here. Does that make sense?

Saxon 1:10:24
Oh, ah, I would say I prefer the Rolling Stones.

Scott Benner 1:10:28
Okay. All right. You're younger too. So like, it's interesting that it's interesting that like, it's not music, that like you didn't grow up with it the first time. Obviously, I didn't either. But I'm just interested, though. Like, like when something comes from the place you are? Is it like, is there lore around it here that doesn't exist? They're like, I don't not love the Rolling Stones. I'm just interested. Like, do you think Paul McCartney is a genius?

Saxon 1:11:00
I know, I don't know. Like, I think the song Hey, dude, certainly ruins any oppression, I have any appreciation that I have for him. Because it just goes on for far too long. I won't deny that the Beatles have clearly had an influence on music. You know, I respect them for what they've done. And for the, I suppose the ability they had to play like when they went over to America to be able to play through the screaming crowds in the stadium with the tiny little speakers behind them, and they couldn't hear each other and be able to do that when they got there. But no, they're not really for me. A bit soft. I have to say for me, though. That's the thing. You know, I like the Rolling Stones because they they rock a lot more. I like it heavy, heavy.

Scott Benner 1:11:51
It's amazing. Those guys still play. It's crazy. Like Mick Jagger still puts on shows. Paul McCartney pulls himself out once in a while and sings it's like, it's ridiculous. Yeah,

Saxon 1:12:01
you know? Yeah. I mean, I'll see the Rolling Stones drummer died last year didn't make recently. Yeah. Yeah. And then Keith Richards just needs an eye and when he goes on stage, but otherwise, that's yeah, I don't know. But I mean, what I'm looking forward to seeing later this year is Ramstein. So that's more my, you know, my tastes.

Scott Benner 1:12:26
So when you go out to is that going to be a festival? Or will you just see

Saxon 1:12:30
this? This is a concert in in a stadium? Okay. I'll have to go to Wales for that one. But I've been waiting two years to get there.

Scott Benner 1:12:38
Yeah, and nobody's I haven't seen a live show and quite some time considering going and seeing some comedy soon. Which seems like that seems like it's okay to do. So. Yeah. But there's been a long pause.

Saxon 1:12:50
Well, you vaccinated now.

Scott Benner 1:12:51
I am I have a, what do I do, we did j&j That I did j&j the first time. And then I did Maderna. The second time to give myself a little, a little flavor from a and a little flavor from be just the case that

Saxon 1:13:07
well, you've done what you can now You're about as protected as you gonna be. You might as well get on with it.

Scott Benner 1:13:13
Yeah, no, I agree. Well, oh, I didn't know you were listening to metal music that might have changed our whole conversation about that.

Saxon 1:13:20
Oh, yeah, I think I have heard you mentioned Metallica a couple of times. Well, when

Scott Benner 1:13:23
when I was younger, we listened to a lot of Pantera. And, and stuff, stuff along those lines. I have to admit, now that I'm older, I don't know that I have the like, I don't know that my taste for it is the same anymore. But I still enjoy it periodically. But oh

Saxon 1:13:42
no, I understand that. I think I'm listening to a lot more podcasts and audiobooks than I am music these days. But every now and then I just do need a reset and just put on something good and heavy. Yeah. Yeah.

Scott Benner 1:13:56
I often think that needs to be done. As an adult. I've achieved a level of stereo in my car that my 19 year old self would have appreciated a lot more than I do.

Saxon 1:14:08
Yeah, fair enough. I mean, I think I've heard you as well having to try and listen to rap music so you can still relate to your son. That's, I don't know if I'm particularly looking forward to that when I finally have some children. Like

Scott Benner 1:14:22
I can't even begin to wonder if you made a baby right now. 15 years from now what I don't even know what music would be and what you would have to try to, to learn to enjoy.

Saxon 1:14:33
Oh, yeah, I don't know. But I'm sure Natalie will be able to cope with that. Because I've talked to other people about music is that well, I like heavy metal. She likes everything else.

Scott Benner 1:14:43
Do you think she'll be at cope? Do you think I don't want to put you on the spot. Do you think you're gonna get married?

Saxon 1:14:50
Oh, that's booked for May next year.

Scott Benner 1:14:53
Oh, okay. Congratulations. That's lovely. Yeah,

Saxon 1:14:57
yeah, I suppose some might say was a bit maybe A bit quick, but it really did feel right. And I actually proposed probably about a month or two before I got divorced.

Scott Benner 1:15:07
There you go, stack up, stack them up, stack them in line.

Saxon 1:15:11
I know, I know, it sounds a bit crazy. But then, at the time I've had other aside, this is actually how will things I think should have felt. And in the marriage I had before. Okay, well, that's excellent. Yeah. You move on to you learn.

Scott Benner 1:15:26
That's excellent. All right. Hey, man, I really appreciate you doing this. I, I, I found your job to be fascinating. And I hope more people reach out to do things that, you know, maybe the rest of us don't know about. I was really, at one point stunned when you said that you learn about things around the world from this podcast. So hopefully, you will have taught somebody else something today.

Saxon 1:15:48
Well, maybe I mean, I think I mean, going back through your older episodes, and hearing the woman who had her daughter went to went up Everest, and then there was an avalanche and stuff like that. It's there just conversations that you would never otherwise get to listen into. Yeah, you know, it's brilliant. I will say, when I first found your podcast, I looked back to see if there was anything to apply to say the job I'm doing. And I was very disappointed when I listened through the episode just keep on trucking, and that it had absolutely nothing to do with trucking. And then, obviously, over the over the time, I've learned that your titles don't seem to have anything to do with what's happening. Apart from obviously, that the after dark episodes, I have to say, are fantastic that they give me an insight into a lot of things that I would otherwise have no contact with, or insight. So I think they're brilliant. And you should definitely keep doing those for people.

Scott Benner 1:16:43
I very, I enjoyed doing them very much actually. And I've had actually, just last night on social media, the girl who came on and talked about being diagnosed during a heroin Bender, like was like, she was just right in front of me on social media. And I thought she looks so good. And I just made me happy. You know, she looked like she was doing so well. And I agree. Like there are stories where you're just like, I don't know anything about this world. And it's it's fascinating to hear more about it. I actually think this I mean, yours is not an after dark, but it's a very similar situation like we don't think about, you know, truck drivers. It's a tough job. It's, it's incredibly important. And I don't think you know, I don't think anybody even like they look right through it, they don't even see it. So, I mean, between that and the girl that was a stripper from a few episodes ago. I find that all really fascinating. And I'm sorry about the titles of the show. I don't know what to do like today's today's Today's episode is called Chile, Chacho. And I believe that I don't even believe those two words actually go together. I didn't even care. Okay. It's just at some point in the conversation. The woman I was talking to was like, I think her cat's name is Chacho. And she, and she was from Chile. And she's just like, you know, explain to me what the word means and everything. And I was just gonna call the episode, Chacho. And I was putting it up and I thought, huh, what if I put Chile with it? So that's fine. I'm doing that. So it's a, you know, woman's got a cat. What do you want for me? And by the way, the cat has nothing to do with the story section. Not at all.

Saxon 1:18:27
Like, I've listened to enough of your episodes to believe you.

Scott Benner 1:18:30
Thank you. I think she mentioned the cat for eight seconds and an hour and 15 minute conversation. But I don't know what yeah, what am I gonna call it? You know what I mean? Like, I really do believe that if you give the titles, too much specificity, that it's unfair to the episode The episodes not about this one thing and then I get fearful that someone will come along and say, Oh, I don't need this and they'll gonna miss out on the other 15 You know, discussions that happened inside of the hour just because they thought oh, this is about

Saxon 1:19:04
I don't know. Oh, you know, Yeah, cuz otherwise would be every episode would be cool. diabetes wouldn't.

Scott Benner 1:19:08
Yeah, what Yeah, I What would I do? You don't I mean, that's. Anyway, I appreciate that. You appreciate it. Thank you very much.

Saxon 1:19:16
That's all good. Yeah, thank you, of course.

Scott Benner 1:19:29
A huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juice box. And I'd also like to thank Ian pen from Medtronic diabetes and remind you to go to in pen today.com I'm to get started right now with the ink pen I hope you enjoyed my conversation with Saxon I'll be back very soon with another episode of The Juicebox Podcast

#761 Andy's Room

Andy's daughter uses Omnipod 5.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Maybe I should just start the episodes by saying of the number then jump right into the content. What do you think? We'll try, we'll just try it this one time. 761 I'll put the music right here

don't know I already don't like that. Hello friends, and welcome to episode 761 of the Juicebox Podcast. On today's show, we're going to speak with Andy. He is the father of a girl who has type one diabetes. And she is an omni pod five user Previously she used on the pod Dash. And before that she was MDI, and he's got a bit of an engineers brain. And so he keeps track of his daughter's time and range in a one sees in a very easy to understand graph, which he and I were looking at while we were recording today, you'll see why that's important later. For now, just remember this, 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 have type one diabetes, or are the caregiver of someone with type one, and our US citizen, please go to T one D exchange.org. Forward slash juicebox. Join the registry, complete the survey. That's all I'm asking you to do T one D exchange.org forward slash juicebox. You must be out of Harry Potter quizzes to take by now. Take a survey that I hope people would type one. If you enjoy the Juicebox Podcast if you love that it is free and it is plentiful. Please help me thank the sponsors Dexcom Omnipod, je voc hypo pen, the Contour Next One blood glucose meter us med touched by type one and in pen from Medtronic diabetes, you can do that by clicking on their links, today's links of choice us med get your diabetes supplies from us met. All you have to do to get started is go to us med.com Ford slash juice box or call this number 888-721-1514. Get your diabetes supplies the way we do with us. Today's offering of the podcast is also sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitoring system. Find out the speed and direction as well as the number of your blood sugar or a loved ones budgeter with Dexcom. Find out if you're eligible for a free 10 day trial, the Dexcom g six@dexcom.com. Forward slash juicebox. If you're good, I'm going to start the recording. And then when you're ready, just introduce yourself and we'll start talking sounds great.

Andy 2:57
So I'm Andy. I'm a husband. I have an amazing wife and we have two kids. So I have a four year old son and a seven year old daughter. In fact today while we're recording, it's her birthday. So excited about that. So yeah, the seven year old daughter Anna, she has type one diabetes and celiac disease.

Scott Benner 3:19
She's got type one and celiac. When was she diagnosed with type one?

Andy 3:23
February of 2019.

Scott Benner 3:27
Over three years now, yeah. Okay, we

Andy 3:30
actually recently hit the milestone of more days with diabetes in our lives in her life rather than without

Scott Benner 3:38
was that an impactful thing for you?

Andy 3:41
It definitely struck me so I knew she was about three and a half when she was diagnosed. And so now we're approaching her seventh birthday here and I'm going Okay, three and a half. We got to be getting close to where we hit that tipping point. So it definitely struck us as like, wow, we were more experienced doing life this way than then before. Yeah.

Scott Benner 4:03
And what did you really know before honestly, those first three years your first kid? Yeah, not much.

Andy 4:08
No, they're just crawling around having fun.

Scott Benner 4:12
Do you have any autoimmune stuff? Is your wife anybody on either sides, your family?

Andy 4:18
Mostly? No, we have some in our extended you know, histories of some thyroid, though I'm not sure that any of its audio autoimmune. Have some diabetes, and there's a possibility that like, a great great. Somebody of Anna's, you know, had diabetes not really clear on if it was type one or type two, they definitely did injections. But not long,

Scott Benner 4:42
long time ago. Yes. Yeah.

Andy 4:44
So this would be I don't know 100 years ago or something? Yeah. Not not 100 several, several decades plus,

Scott Benner 4:53
well, let's see could they just came up with insulin in 1922. Right. So Oh, yeah, a long time ago. Nonetheless, anything over 10 years ago seems like a long time ago. So well, I want to ask you, How involved are you with the diabetes versus your wife?

Andy 5:15
Yeah, we make a really great team, we're both significantly involved. So my wife, very fortunately, is a pediatric nurse. So, in fact, we had this very odd situation of she was our daughter was admitted on the one floor below where she had worked for about nine years or so at that time. And so she's great, you know, obviously has a lot of the medical know how really good with blood and injections and stuff early on. But then, you know, I'm really involved too. I'm, we're both really type A, you know, I'm, maybe someone say pretty controlling and things like that certainly involved, like, one set,

Scott Benner 5:56
some would say, and

Andy 5:57
some might, I don't know if I believe him, but yeah, some might say that.

Scott Benner 6:00
Who are these people who might say that hypothetical people?

Andy 6:03
No, I don't, maybe my wife. But you know, so Anna's in first grade now at the school, we have an amazing nursing team, and we just have a text thread among the nurse, my wife and I, so whoever's ready for it at a given moment, we're just communicating and both really involved. Okay.

Scott Benner 6:22
So what's the management style? You MDI pumping? What are you doing?

Andy 6:27
Yeah, so, actually, for the last three months, we've been on Omnipod, five, with Dexcom, G six, of course. So that's been going great. And so we started, you know, diagnosed in 2019. Several months in there, we got on to Dexcom. Pretty quickly. About a year after that, we started just Omni pod Dash. And then, yeah, the last few months had been Omnipod. Five,

Scott Benner 6:55
how were things going, I guess, incrementally. Was there a honeymoon for your daughter?

Andy 7:00
Essentially? No. Okay, nothing weekend mark. She was

Scott Benner 7:04
just needing her insulin right from the get go.

Andy 7:07
That's right. And just pretty consistently cranking down carb ratios.

Scott Benner 7:11
Okay. So you did MDI for a little while? Yeah, over a year. Okay, shots for a year CGM for most of that time. That's right. What were her outcomes like in that first bit?

Andy 7:25
They were good. I mean, you know, we've we've been fortunate, I think, as I hear, you know, listen to podcasts, I think we were really blessed with the education and the endo team that we got from day one. So we've always been on kind of a progression of just getting better improving, really seeing things as a learning. So like, you know, when she was diagnosed, when she was almost 11, so high 10s. Even on the, you know, MDI, we were, you know, got things down into the about low eights, got onto the pod and progressed into the seven. So we've been kind of a continual progression of just improving and getting better.

Scott Benner 8:13
Do you see many lows with the MDI?

Andy 8:18
Yeah, I would say so. I mean, I don't know not, not not, but terrible now, right? Like, not like, we felt like we were fighting lows all the time.

Scott Benner 8:28
Okay, so you had some? So who sets up that insulin for you for MDI? And do you ride with what they gave you? Or did you start making adjustments to it?

Andy 8:38
Yeah. It's a good question. And, you know, part of what what I was reaching out is how I've kind of evolved, particularly myself in my thinking about controlling diabetes. So early on, you know, you get these equations and these ratios, and you go, Oh, this is great. This, these medical people, they have the answer, I'll just follow these numbers. This is fantastic. Like, I can do that. But, you know, they did give us really good training, and they kind of teed us up for, this isn't how everything is going to continue to look into the future. You need to look at, you know, patterns and see where can you adjust. And we latched on to that pretty quickly. I mean, within a couple few months, you know, maybe at first we would call the endocrinology teams, a hey, we saw this, we're thinking we're going to change your carb ratio for lunch, and they say, Yeah, give that a try. But then pretty quickly realized, like, we're the ones here with with the insulin pen, you know, why are we calling oh, what? Yeah, we know what she's eating. We're going to deal with the rim and fake ramifications either way, and really started taking that on within a few months

Scott Benner 9:49
and they were supportive of that the whole way it sounds like Yeah, absolutely.

Andy 9:53
Okay. Yeah, they they planted a lot of good seeds. I mean, I do, we had, you know, like the section She for endocrinology was our attending and she planted seeds along the way of, you don't have to start doing this right now. But this is what you need to start thinking about around Pre-Bolus saying, around looping, I mean, even that specific, like, DIY loop, hey, you may want to start looking into this people are using this and really doing great, you know, we ultimately never did that. But I give them a lot of credit for kind of giving us things to start looking into ourselves.

Scott Benner 10:26
Okay. All right. So you do really want to come on in for a specific reason. So tell me what you do for a living. You don't tell me where you work. But what are you doing? What's your training in your background?

Andy 10:37
Yeah, yeah. So I am an engineer, you know, my education is in mechanical engineering. And I work in research and development, right. So I get to put my engineering to use day in and day out some of those, you know, scientific concepts and things like that. And I've even specifically worked in like areas of manufacturing process development. And so much of what goes into a continuous manufacturing process is closed loop control in various forms. And so as I look back on the last three and a half years with with type one for Anna, and it's been an interesting journey to how I took kind of that engineering thinking, some of that control thinking from from my technical background, and it's, it's evolved and how I use that and think about it relative to diabetes.

Scott Benner 11:33
Okay, now, so there are times when I talk to people who have an engineering background, and diabetes flummoxed them, because it doesn't follow the numbers the way they're told. But you notice that, and you adjust it somehow. Is that right?

Andy 11:49
Yes, though, not right away. So you know, kind of the funny stories relating to that, right? So you get presented with this diagnosis, you get training, like I say, the equations, right, so there's, there's a carb ratio, there's a correction factor, right. So it's a number minus something, apply your correction factor. So I think early on, I was in that camp of, oh, this was great, I, I will do this math, I am fine with this math. And I will follow this, I will waste things to the 10th of a gram. And we are going to nail this and I you know, I did that for a time and and you get what you get, you don't get consistency. I actually, after the first day of of education in the hospital, I came back and the team was doing their rounds in the morning. And so they all came in attending physician and a few others. And, you know, I had come up with these odd combinations of like, what her blood blood sugar could be, and what correction factor was resolved and some carbs and like rounding, like, you know, point one of of a unit, and I'm gonna know, that's not the right rounding for this. And they're like, well, that's our that's the rule you use. And I Okay, well, that seems odd to me. But then, you know, really, particularly through the podcast, so I've been listening to the podcast for not quite a year and a half, I started realizing like, Okay, if this thing really, is this dynamic, and it doesn't follow that simple equation? Well, you should adapt, you should find out what the control really is what it really should be. And was able to get on with that.

Scott Benner 13:32
So you were able to, were you able to take the unknown parts, the parts that come from the body, and find some rhythm to it? Or did you just learn to be flexible with it, just go with it. And when it asks for something, you give it to it?

Andy 13:47
Yeah, more. So just being able to be flexible?

Scott Benner 13:51
Yeah, it really is the whole key to the thing. It's insulin works the way it works. And if you can get the same, if you can get the same response every time from the body from the need, then yeah, it all works terrific. But that's, it's not going to happen. And then there's variables like you know, infusion sets, how old they are, where you put them your hydration, and on and on and on. And you also can't sit down and there's no spreadsheet you're going to make that's going to keep all that straight for you. Because you don't know, you'll never know the input from those things. Ever. Yep, you know, so

Andy 14:25
and I do I do try to find little thing. So you mentioned spreadsheets, I definitely have lots of spreadsheets relating to Anna's diabetes. So, you know, I can tell you statistically, over time, how much leg pods have been different compared to arm pods and things and I do that just a little bit of my own, you know, fun, because when you get right down to it, even that impact is really small. And if you compare that to, hey, what's the difference between a pasta dinner and you know, bacon and eggs for dinner? That difference really washes out the other things Even though they might be fun little,

Scott Benner 15:02
like, so you may be you're on a leg. But it's pasta. So you're being pretty hard with the insulin anyway, the leg part doesn't really matter. Maybe if it was on a stomach and the stomach work better for you, then use a little bit less insulin, but not not a ton different. I'm looking at the charts, you said I'm trying to decide, like, how far are you getting into this? Are these? Are these generated in Excel? Are you in like, are instead of making these

Andy 15:28
lots in Excel? I do have a couple of other statistical packages I use, like when I when I say that comparison, you know, between different parts of the body have a couple other statistical packages I've used. Yeah,

Scott Benner 15:39
I watched my son do this for is his degree. And I'm starting to learn about it a little bit. I don't know how to use it. But I know what he's doing at least. Why aren't you telling me what I'm looking at here a little bit. So I have your time and range chart in front of me that goes all the way back to looks like May of 2019. Till. Geez. Martin last

Andy 15:59
weekend. Yeah, right here. That's right. So and this was, you know, when I think you had put out a request for people who want to be on the podcast, you know, I was certainly interested, if really love your podcast, I'm glad. And I had the data to back up, which is this chart, you're talking about the fact that the simple matter of you know, us listening to the podcast, and starting to pick up little nuances and try them out has made a shift in the data. Right. So the graph you see time and range, it starts when we started Dexcom. And we were on MDI, cc times and ranges maybe they averaged.

Scott Benner 16:45
Let's begin today with Dexcom. And talk to you about getting the Dexcom G six continuous glucose monitor. There are a ton of management reasons why you would want the Dexcom. But let's start instead, with peace of mind, alerts and alarms set at your discretion. Would you like to know when you're going lower at 9080 70 105? It's up to you. Same thing about high alarms, we have our high alarm set at 120 and 130. But maybe you want yours at 150 or 110. Again, completely up to you. Then when you reach those thresholds Dexcom will let you know when you're using insulin. Peace of mind comes from knowing that you're not going to get too high or too low Dexcom can help you with that dexcom.com forward slash juice box. You want to try it out for yourself you can you may be eligible for a free 10 day trial, the Dexcom G six, that is something you can find out@dexcom.com forward slash juicebox. You'll also be able to learn way more about what Dexcom does know what I just told you. As a matter of fact, I need to pick up my phone. I'm doing it while I'm talking I swiped up. The phone has recognized my gorgeous face with face ID and I can see that Arden's blood sugar is 109 and it's stable. That was pretty quick. I'm looking at the number, the direction and the speed of my daughter's blood sugar right here on my iPhone. You could do that as well on your iPhone, or your Android device. There are links in the show notes of the podcast player that you're listening in now. And links at juicebox podcast.com to Dexcom and to the place where we get our diabetes supplies us med us med is the number one distributor for FreeStyle Libre systems nationwide. They're the number one specialty distributor for Omni pod dash. They're the number one fastest growing tandem distributor. They're where we got the Omni pod five, and they're also the number one rated distributor index. com customer satisfaction surveys. What more do you want the what US med is offering us med.com Ford slash juice box or call 888-721-1514. They've got an A plus rating with the Better Business Bureau and they accept Medicare nationwide as well as over 800 private insurers. They carry everything from insulin pumps to diabetes testing supplies to your latest CGM, just like I mentioned a moment ago. US med always provides 90 days worth of supplies, and your shipping will always always always be fast and free, better service than what you're getting now. And better care than you expect. That's what you're going to get at US med after this episode. If you're interested in getting the Omni pod five, or the Omni pod dash, and gosh by golly you might just be when you hear what Andy says next. Please use my link on the pod.com Ford slash juice box.

Andy 19:56
The graph you see time and range it starts when we started Dexcom and we were on him The I see see times and ranges, maybe they averaged 50 something percent, then the next section on the graph is when we started Omnipod dash and just being able to get up in the middle of the night, see a number, literally from my bedside table, you know, do a bump through the wall love that about the, you know, kind of remote Bluetooth aspect of the Omni pod, we shifted up, there's a clear shift in time and range up to the high 60%, probably close to 70%, sometimes close to 80. And then there's the you know, juice box section of the graph. And there's another really clear shift up there really averaged close to 80%. Time and range.

Scott Benner 20:45
This, I'd like to explain what I'm looking to looking at for people. So you have points on a graph that that are amazing. I mean, pre pod, you have it set up, like you said, probably the average, right? There's about 50%. Time in range, what is the time in range? What's the range you're looking for?

Andy 21:04
Yeah, those are all against a 70 to 180. You know, we certainly target better than that. But it just keeps the data. Okay.

Scott Benner 21:10
So you're about in the 50%. Like, that's where your grouping is with a cluster of your most of your data points are. And then like you said, you go to using on the pod dash and it comes up. I call it like high 60s. Right. Right. Now you start listening to the podcast, and it jumps up to what would you say? 80?

Andy 21:30
Yeah, yeah, average? About 80%. There.

Scott Benner 21:33
Wow. And there are you have data points listening to the podcast, that are almost at 90, as well. That's right. Now here's here's the part that's both impressive, and exciting. And I think it speaks well for on the pod five. And for me, to be perfectly honest, which is you left, you left up a little with on the pod five. But it isn't that much better than just doing what the podcast says

Andy 21:57
that that is fair on these weekly data points. So far, though, that we are still trending up, I think in Omni pod fine.

Scott Benner 22:05
I'm seeing that too. There's no other place on your graph that's bending towards the heavens as much as the Omni pod five. So you jumped into Omni pod five, how long ago now? Tell me again, right? About three months. Okay. And so you're those first couple data points. It's pretty equal with the podcast a little higher, but then all of a sudden, it's on its way. So would you say you're seeing the algorithm beginning to work better for you?

Andy 22:30
Yeah, absolutely. Okay, so now we're, you know, the last several weeks, and each one of these data points is just the weekly charity report time and range. And we're now always seemingly low 90s. You know, percent time in range and the average glucose now we're hitting is right about one 141 30s.

Scott Benner 22:51
So give me a little perspective, pre pod a one sees in the eights you said? That's right. On the pod dash. Where do you think she was?

Andy 23:01
Yeah, they were mid sevens. And mid sevens?

Scott Benner 23:06
Did you get into the fives with me?

Andy 23:09
No. So it actually have a different graph on the thing I'm looking at. And it leads up to a one sees next that so in the in our juicebox period,

Scott Benner 23:19
I have that one, two, I'm sorry. Let me scroll guy. Yeah, yeah.

Andy 23:22
Yeah. So you know, anywhere from like six and a half to seven. One was kind of our juicebox time period. And then we actually just had our appointment here recently, after a couple months on Omni pod five and, and had our first 6.0. Wow. So really excited about that.

Scott Benner 23:39
And I would imagine and let me say, I fully expect less work with on the pod five than following the podcast.

Andy 23:48
Absolutely. Yeah. Okay. Particularly the fact that we sleep through the night you know, I I get the thing teed up where I want to go into bed and I'm I have pretty good confidence. It's gonna stay there.

Scott Benner 24:00
Yeah, I don't think I think the longer you do the podcast way. I don't know if that's a thing. The way I talked about diabetes, if you do that your real life, I think, did you notice it getting easier as time was going on?

Andy 24:17
Yes, I would say so. Right? Because you just pick up little, little nuances. You have that flexibility in your thinking. I think that's really the key thing is just be flexible. Yeah, there are cases where you need more insulin, you don't have to solve why necessarily you gotta meet the need.

Scott Benner 24:32
Right? Right. It's so cool to hear people say something that occurred to me because i i Well, okay, so let me ask you this. So as you're doing it the podcast way I can't wait. I'm saying that. I don't even believe that but, but you're being flexible. You're understanding how insulin works. You know, you're not looking at high blood sugars not doing stuff about it. You're not overcorrecting and lows, that kind of stuff when you're doing that, and it's getting a little easier as it goes along. But but is it? Was it sustainable?

Andy 25:07
Yeah, that's the it's a great question. And actually, our our endo the appointment before last. She was super kind and really drilled on that question like, you guys, this is great. But are you good? And overall, I actually think yes. So we were able to kind of have, you know, a learning mindset and know that yet we're being flexible. Yes, we're going to meet the needs, and we're not always going to be perfect. So like, we're not going to beat ourselves up if we do something or we try a Bolus and it doesn't exactly hit right. It wasn't, you know, it wasn't easy. I don't think managing diabetes in any form is, but it was sustainable. I do think so now that I get less sleep, you know, even four months ago, yes. But it was sustainable.

Scott Benner 26:06
Yeah, I agree. By the way, I just I think that this is so interesting. Looking at this on your, the way you have it graphed out because basically MDI is, is how things used to be and you were MDI with a CGM, by the way. So what are you really missing MDI that you didn't have with the pod? Where is it that you didn't want to be? You weren't looking to give her a quarter of a unit or a half a unit through an injection to move a number, you were happier to look at a higher number than to have to shoot or more, is that right?

Andy 26:39
That's right. Yeah, just the ability to you on the on the pod. And even that, that remote aspect, I don't even have to walk up within 510 feet of Anna and give a little dose I realized, man, it needs that extra even for her at the time just needs that extra point to and it's going to make the difference. I didn't even have a pen that could give a point to

Scott Benner 27:00
Right. Right. I remember thinking when Arden went from shots to on the pod long time ago, I remember believing that one of the best points of this not only what we just said about being able to give small corrections. But it was for her not to have to be interacted with as much just turned out to feel like God, this is happening again, this is happening again, because you see it on their face. And then that makes you less likely to want to do it. And then suddenly, you find yourself in that scenario where you're going oh, or budget is only 160. I guess I'll just leave it alone. I don't want to bother. I don't want to shoot it with this needle again. And that's a that's a big piece of it. Also, I would think how much did you get into looking at Basal rates once you went from MDI? That must have been a picnic for you. You must have been happy. Your little math brain must have been

Andy 27:51
Yeah, no, no, absolutely. So we did know. Definitely, like Temp Basal goals and being able to identify where we needed. Different Basal rates didn't didn't try to overdo that too much. But I mean, your point on on. And it doesn't even notice. So like the school nurse, she sneaks into the classroom all the time, and will be on the computer with her headphones on. And she's like, Yep, I said to those guys, she she didn't even see me. So there is something to that.

Scott Benner 28:19
I know, when you're on an algorithm. Sometimes, Arden and I were in the car recently, and we were driving along and we stopped at a light, the music stopped for a second it got really quiet. And we just heard click, click, click and I was like, Oh, you're getting insulin? And she's like, Oh, yeah. And you don't even really think about it just sort of happens. Okay, so what did you because you started on the pod five, three months ago, then my on the pod five episodes that I did in conjunction with insolate. They weren't out yet. So how was it starting on the pipeline without any kind of real information?

Andy 28:59
Yeah. Overall, it went pretty well, we felt great with the dash, I think it was a pretty good experience to transition from dash to five and do the online training. You know, I'm the type of person that like, I'll read the whole manual front to back. And so I did that for the Omnipod five, and I actually do think there's value so for things that helped us in going to Omnipod five, for example, and I see questions that come up a lot. It's a it's a great question. It's a logical one is, oh, this this max Basal rate that that must mean something that's a setting in Omnipod. Five, you probably know, but it doesn't have anything to do with the algorithm. That's a that's a make sure you don't fat finger typing in a Basal rate thing. So just understanding even through the manual, and through the video training, how is this thing working? What is it looking at? And knowing that it's looking at total daily insulin and that's really how it's making calculations. So then I knew, Okay, if if the knob to turn, so to speak, to get this thing to react is total daily insulin, I need to impact the total daily insulin. And if I'm an automated, the way to do that is bolusing. So we were able to, you know, I think I see, you know, people, other groups, I'm a part of their, their struggles transitioning to and as that the, the pod five is learning. There are definitely struggles, but I just sit like, we don't oblige high blood sugars. And so I gotta give a half a unit that

Scott Benner 30:35
I'm doing. And then the algorithm learns that, you know, the algorithm, I guess, is saying to itself in very rudimentary ways, I use this much insulin, but the user keeps coming in and putting in more, so I'll get more aggressive with it as well. Yep. Yeah.

Andy 30:49
Yeah. All it knows is the last three days, you know, we use 22 units of insulin. Yeah, that's like the new kind of baseline. And I do think, you know, my background, and as I understand control systems and sensing, in my world, and my technical world, I was able to say, really just dig into one of those details that matter. And let's put thrown in on that with the pot.

Scott Benner 31:15
How much of that do you think helped you? Well, I am I have a tooth. I guess I have a two ton question here, but did anything about what you learned from me help you use the algorithm?

Andy 31:30
It's a good question. Yeah. Yes, yes. Undoubtedly, particularly meet the need, like, I knew that whatever FDA approval went through, and all that, to sit there and like stay in automated mode, as it would learn and be sitting at like, 200. I wasn't going to just sit there and watch that whether or not it would mess up the learning. I was going to meet the need and give insulin. So even even if that was going to throw off the learning, which I didn't think it would write the algorithm learning. I was gonna do that. Because

Scott Benner 32:07
how do you how do you sit and look at it? Yeah, no, I know, I have I had very similar feelings. When we when we were setting up on the pathfinders. Like I got a Bolus, like what are we doing here? I have to Bolus I think we started it with not enough basil. And that I followed that idea for a while then I really, I realized that Arden was having other impacts that I was also seeing. It was flow mixing loop as well. So these impacts were flow mixing loop, they flummoxed on the pod five. And then we were able to actually change her her health in an interesting way, which I'm going to bring up a couple of times in the podcast. So we learned that Arden wasn't digesting her food, she had gastritis basically. And so food wasn't going through her quickly enough. And we were seeing these, like almost every meal looked like a high fat meal all of a sudden, because the impact was lasting too long. The blood sugar was too high. You felt like you couldn't give her enough insulin all of a sudden. And and we went through all the all the I don't I don't know how to put it like normal doctors you could to try to figure out what was going on. And I've told this, I've told this on another episode. It's not out yet. But when she got a endoscopy that, you know, looked in her stomach said, Hey, there's a lot of inflammation here. There's even some like lettuce leftover from last night in here, which shouldn't be. They did a couple of biopsies. Nothing was crazy wrong. And they said, you know, we're gonna put her on a gastro precice diet, which freaks you out because of diabetes. But gastroparesis is a generalized medical term. That means slow digestion, right? When you when you think of it, and in terms of diabetes, you think, Oh, God, there's been some nerve damage, and I'm not dying, you know? So anyway, after we all got past that moment, where the doctor is like, Oh, this is just some gastroparesis. We were like, wait, what? And? And he's like, No, it's just, it's slow digestion. And I was like, Okay, could we just, why don't we just fucking call it slow digestion. Okay, man. Let's do that. Let's stick with that. If you don't mind, you know? And he's like, okay, and I was like, Alright, good. I said, um, and then he wanted to give her you know, being a kind of a, a general doctor. I don't know what the word is. I want not an outside of the box thinker, doing what the system says, right? Here's medicine for pain. So her stomach doesn't hurt anymore. And here's this and here's that. Let's put her on a super restrictive diet, where she won't eat anything that isn't easy to digest. Well, my God, it's like no skin, no raw vegetables, no meat. No like anything that takes takes any kind of time to digest. And God bless her. She did it for like, a week. Before she was like, listen, I think I'd prefer for my stomach just to her. And I was like, all right. But we didn't want that, obviously. And she was a month or so away from going to college. And I just, I did not want to send Arden to school with stomach pain that she had had for. I mean, if I'm being honest with you, for years, maybe, you know, off and on for years getting worse and worse. And so we went to

I just, I just said, Look, this doesn't make any sense. It's like, what do we really need here? Like, what is this really need? We need food to clear her stomach quicker. We need her to eliminate the waist so that they can her stomach can continue to clear, right? This is what we're looking for. I went to a health food store. And I was like, I need digestive enzymes. Is that a thing? I was like, What do I put in the belly to make the food digest faster, and she's like, there's something called digestive enzymes. I didn't know about that before that was like, that's great. Perfect. Give me those. And she's like, let's give her a probiotic to help heal her stomach. And, and then we went back to her a week later, I was like, Listen, this is all great. All this stuff. I'm talking about these high blood sugars that meals like Gone, not even that but she's eating like high fat meals that aren't showing high blood sugars anymore. It's like this is the digestion part of this is great. I said we're not seeing the action on the other side as much though. And she's like, ah, magnesium oxide gives us one of those ardent gets on a better bah, bah, bah, next thing, you know, her system is running really well. Yeah. And in the week before, you know, we were getting ready to leave for college. I'm starting to see like low blood sugars. I was like what's going on? You know, so, at first you just do it the way you always do it, you just managing managing and four or five days into it. We're now driving down to Georgia on a long car ride where I really expected Arden's blood sugar to go up for all the sedentary, you know, just not moving all day long. And she was still in the look like she was good, not low, but like super, like good blood sugars. Like this doesn't make sense, you know. And then we get there. And that night in the hotel, her blood sugar is just low and we can't get. And then the next day, it's choppy during the day, we're correcting lows, trying to figure out what's going on her first night in her dorm, she is low all night. Like I'm up the road at a hotel. And we're we're texting and fixing her blood sugar's over and over again. And I'm like, What is going on? Now? I should tell you that right before we left a couple, I don't know, a month or so before Arden stopped using Omni pod five. And she went back to loop because she was more comfortable with it. And she didn't want to carry the PDM as she was going off to college. She's like, Yeah, she's like, I really know how loop works. On the pod five is not difficult, but I have to carry an extra thing. Can I just go back to loop? And we're like, Yeah, that's fine. So she went back to loop. But even on loop, like, we're like saving loads all night long. So I wake up the next day, I'm like, I have to rethink this whole thing. You know, like something's wrong, I looked at digestion piece, her body's working differently. So her needs different now. And if I told you that her insulin sensitivity went from like 42 to 70. Her Basal rate during the day went from 1.1 to six point 2.65. And her carb ratio went from like four, four and a half. You have four and a half carbs, a unit for four and a half carbs, two, maybe it's like six now. Wow. And then everything leveled right out. So now we're in the process of fine tuning as she's actually going through her first week of school, but it's all I could think of earlier when you were talking about like, be flexible. Its you know, its timing and its amount but then it's timing and amount and flexibility. Fighting against these other forces that you have no idea what they're going to be. And that just showed it so with with poor digestion and poor elimination Arden's insulin needs probably were 35 40% greater than they needed to be. Wow, fast. It's fascinating, you know, yeah. Yeah. So anyway, now she's good again. And we're just, you know, we're now we're just learning how to, you know, how to live through different schedules, and it's much hotter there than it is here. But she's doing really well with it. So anyway, that's great. Yeah, that's great. So how much of this? How much of the stability that you have right now? Do you ever look at and think well, sure, but there's no hormones yet? Because your daughter's young? She's seven.

Andy 39:57
Yeah, she's seven. So that I do think about that. Largely, though we leave that worry for a future year, it's good. You know, and I kind of look at it and go, alright, if I hear that's challenging, that's going to be really dynamic. But even then, you know, think about, okay, how can we track cycles and be able to kind of tackle them that way? So I largely stay like blissfully away from that.

Scott Benner 40:30
It's a good idea. You have many years, I mean, you might have six years. So you have to worry about that. If you're, that'd be nice. Trust me, it's not a lot of fun. But it's also not. It's also not unknowable, right? It's just and I can't wait to see how algorithms handle stuff like that, you know, so sure. And I do wonder to how they're going to improve as time goes on, because as well as Omnipod, five is working for you right now. This is the first iteration of this algorithm for them. Right. You know, so what happens in the future? I don't know. But I'm excited to find out that's for sure.

Andy 41:03
Yeah, I'll tell you, I, you know, I don't see myself going into the line of work around developing diabetes technologies, I guess, never say never. But some ideas that I have in that way. You know, if you think about, like, people are smartwatches, right? What kind of data does smartwatches have on people around heart rates? Temperatures, I assume? What is other sensing? We could do? You know, what if the the Dexcom sensor had one section of the wire that was doing what it does today? And another part measured a different or motor? It measured adrenaline, right? I think there's some, obviously you look at things like bionic pancreas is that's an area of development. But I think there's just like, we're getting into machine learning in a lot of different places. And if you can bring in more inputs, right, we all know, it's not just the carbs, and it's not just a blood sugar. Those are the two things we pretty well know and can measure today. But what else is out there that's maybe being measured just passively right by like a smartwatch? Or that you could measure alongside it and put together a really smart system. So it would pick up that adrenaline rise, because it would detect the adrenaline now, i i can i can imagine the FDA choking on this concept as I speak. But yeah, there's some really interesting things out there that will be done there, the

Scott Benner 42:26
machine learning aspect of it is, it's really, I think that's the best path to more because, you know, I mean, think you look up at the night sky, and you think you see a certain amount of stars, and there's billions more than you can see. And right now, like you said, we're looking at, you know, carbs, basically, and insulin, they don't, most doctors won't even tell you about the impact of fat or protein. So you know, and these are quantifiable ideas. And we don't talk about them. We're talking about two, two of the things. And how many of how many more can there be like, Alright, you're always the insulin on the one side, it's always gonna be the insulin, but how many more things could the insulin be thinking about? I think it's a great idea. And I don't know how well people understand the concept of machine learning. But the, the best way I can describe it from things I know, just from pop culture, is that Tesla, for example, had to build their own computers to do the computations that they're getting back from self driving, like the computer didn't exist, that was strong enough to even think about all the data that they had. And once they saw, at some point, they were like, we have all this data, we can't even compile it and make sense out of it. So we'll build a better computer that does that. And now this, you know, I don't know how well self driving is ever going to work. But however, well, it's going to work, we're gonna get to it much faster, because there are computers, looking at these data points and saying, Okay, this, we can count on this we can count on, you know, and the I don't know how long that takes those computers probably in a week do what it would take a human being a year to accomplish, I would imagine.

Andy 44:01
So we're for 1000s of years. But yeah, yeah, right. Right. Thanks, like

Scott Benner 44:05
a long ass time, because we're not so smart. And and, and look how that applies to diabetes, right? There are all these other things happening, that we just can't keep in our heads. Which is why, which is why, you know, it's funny, you said something earlier, that really fits into how I think, which is why I don't want to say dumbed down. But why I talked about diabetes the way I do, because there are some ideas that if you just give yourself over to them will cover most situations. But if you get caught up trying to think of exactly what's happening in every situation, and scenario, it'll just be analysis, paralysis, right? You'll sit there you won't be able to do anything. So some things like you said earlier data. Yes, I can see the difference between sites, but it's not appreciable enough to make some big adjustment over, right? So that's right. So your blood sugar's high, use more insulin, your blood sugar is low, use less insulin. Have you not? I mean, you spike too fast before a meal, try changing your Pre-Bolus. Like that kind of stuff is it handles most things. So I don't know, my my inability to see the bigger I can see the bigger picture, I can understand it, which made me run back to like, let's, let's let let's simplify this with T shirts locates, basically. And I can't believe it worked for you, because your mind in my mind are probably radically different. Yeah, that's pretty cool. How does your daughter do with diabetes in general? How is it on the personal side?

Andy 45:34
Yeah, super well, she's incredibly smart. And you know, so actually early, I asked my wife I science and we have when did we start? Dexcom? And so she pulled up. What was the video of Anna doing a tutorial on like, Dexcom number two that she put on, she's got this cute little four year old boys, late three year old boys. And she's going, this is my Dexcom G six, and just just talking everybody through it sharing with with anybody and everybody. So it is really nice to see, obviously. I wish she wasn't as smart about diabetes related things. Like if she wouldn't have it, but but she does. And she rolls with it. So well. You know, I think in school, navigating, well, why does Anna get a starburst? Every once in a while? Or, you know, what, how are we going to manage where the devices go? And like, is a phone a fun thing to play with? Or is that a medical device? Right? That's a little challenge.

Scott Benner 46:39
Yeah, it goes away as they get older. There was one kid in high school that tried to make a big deal out of it. Arden was the only kid that could keep her cell phone on her going into this one room. And the kids like why does she get to keep her cell phone and it became like a thing. And the teacher called me and said we're gonna have to take our cell phone from her. Because people were complaining. I was like, Well, hey, you're thinking about that backwards? And and I was like, but um, no. I said, Why don't you go back to the student and tell them if they want to get an incurable disease, they can keep their cell phone till that's what seems fair. And and that seemed to put an end to it. But it was interesting how it was interesting how the teacher went with was willing to ignore the whole health ramifications of it just to make the argument go away. Like, let's just make her happy and put on the cell phone. And I'm like, no, sorry for not doing that. But yeah, I take your point. There's things that they they get, and there's things that they understand that you would be much happier if they didn't have to understand but yeah, it isn't.

Andy 47:48
So she she doesn't know, you know, we'll say Well, Anna, you you can address that whoever you like, you know, you could if when they ask you, what's that bandage on your arm? You could say, oh, it's just something I have to wear. Or you can say that's the next common question my blood sugar, but then she is intelligent enough to say, Well, yeah, but then they'll say, Well, what's blood sugar? And, you know, now I'm funneling, I'm having a dynamic.

Scott Benner 48:12
Well, that's excellent. So she's not having any trouble that you can see so far. What and you guys are getting through? Okay. Has it caused any issues for you, anything that you would tell people to look out for?

Andy 48:26
Yeah, I mean, definitely, more stressful. So you got to just give yourself grace, give, give whoever your team is. For us. Like I said, I have an amazing wife. We are so fortunate with the school team, we have both the teachers, counselors, Principal, nursing staff. So I could definitely see if you didn't have some of those support systems and people that were on your team and going along, saying, Hey, we're taking your lead mom and dad because you know, this the best. I can see that just being incredibly frustrating and stressful. So, you know, as much as possible, getting those those support teams on your side, you know, family, we were fortunate to have family locally, and they get involved and learn. So yeah, overall goes pretty well. I think. You know, I'm able to compartmentalize the things, it. I think it weighs on my wife a little bit more mentally just around feelings of guilt. Like if something isn't like if a budgetary is right, and I and she's like, I gave this Bolus and you know, and I'm like, You made exactly the right decision. So I think being able to coach yourself just around I need to kind of separate what was this outcome, you know, from this given Bolus? Or Or did I give the right amount of juice to start bringing something up? It's not a reflection on you as a person, right? It's just you tried something And here was the result, it either worked great and you brought the high down, or maybe it stayed up for another two hours.

Scott Benner 50:07
Now, I think it's incredibly important not to ignore what you learned, but not to take it on as some sort of a personal failing, either. It's just, it really is all. It's just you're having these experiences over and over again, and you should be incrementally learning from them, you know, and not spending your time beating yourself up. Because I do think you lose the, I think you lose the the teaching of the moment, if you spend that time saying, Oh, I did it wrong. It's not what happened. I mean, you know, it's, it's an extension of when you hear people say, diabetes, I do everything the same one day as I do the next day, and I get totally different results. And I understand the feeling, but it's not true, something's different. Right? You might not know what it is, but something's different. You can't, you can't take that on as a personal failure. Because I don't know you had a hormonal shift overnight that you're unaware of at the moment, that's not you messing up. It's a it's a variable you can't see. So don't worry about that's why I tell people like don't worry about why. Just fix it. You know what I mean? Like, you can't, I mean, I know you want to understand, and you're hoping to stop it next time. That all makes sense. But in the moment, why is not important. And the amount of feedback I get from people that say that that that one idea was like a saving grace for them. It's fascinating, really, you people get stuck on the wrong things. And then they just can't let go of it. They get their teeth into it, and they just can't let go of it. Tell me about starting on the pod five. So how did you decide what settings to put in? And now first of all, I want to say there's somebody has to be listening to this from insolate, who is so thrilled you read that manual there probably any I wrote, I wrote chapter for how much work must have went into that manual. And people probably pick it up and flip through the book and set it back down again. And you're like, I read it cover to cover. And I'm sure when that happened, somebody giggled and was like, thank you. But But tell me, you know, what did you do? I guess where were her settings on Dash? And how did you put them into Omnipod? Five? Yeah.

Andy 52:20
So we had, you know, we were pretty consistent with making sure that her Basal profile was where we wanted it. It wasn't too crazy, segmented. But we knew some areas like in the nighttime that needed to be a little different than a morning than a daytime. So overall, we took things directly over. So right just based on profile, as it was carb ratios as they were because again, we do we do carb count and just Bolus, you know, put the carbs in and use that. So put them straight over, I will say, looking back with what I know now, and I think you said a similar thing, I would, I would have punched up just all the numbers across the board a little bit. So I had to punch up the basil in our basil. Average is probably about 0.4 units an hour. And you know, even if it just bumping them up to that point four or five, just give everything a little bit more or maybe touch because ultimately some of what we did, for example was we edged carb ratios down a little bit, right. So more insulin a little bit more insulin for the same amount of carbs. So just knowing how that algorithm learned and the total daily insulin, I would have just set things up so they got a little more insulin starting out. Okay, give it a better starting point, a better learning starting point.

Scott Benner 53:45
Okay, I actually just thought of something I want to tell Arden just jotted it down in front of me based off of what we were just talking about. So, a little more aggressive on all the numbers, because let me guess why? Because you still bump and nudge a little bit with my system. So you're adding extra insulin in along the day? Because you can't figure out where it goes yourself. You're not sure does it belong in the Basal does it belong in the meal correction, like that kind of stuff. So if your settings are what your settings are, but you're adding in a few more units across the board, you're like, let me just split that 5050 I'll put some of it in the carb ratio and I'll put some of it in the Basal so that the algorithm understands how much total daily insulin I'm using. Right Yeah, and now

Andy 54:30
and I think based on what I see feedback from from people I think the way they set up the learning for the starting out with only five five was was conservative, right? I mean, if you think of the FDA and what these companies have to do, they need to ensure that that safety, so I would just try to take out a little bit of the conservatism.

Scott Benner 54:55
Okay, I take your point. I think you're probably right. I've never obviously been in One of those meetings, but I would imagine what the meeting is, is, look, you're gonna give this to X amount of people. And our goal is for zero of them to experience low blood sugars. So, you know, how do you do that? You probably lean in that direction. Yeah. Now that that makes total sense. Is there anything that we haven't talked about that you want to talk about?

Andy 55:21
Maybe I'd share a couple just kind of like hospital, you know, admitted stories, and then maybe have one funny question slash bone to pick with you. Cool. We'll see if we get that

Scott Benner 55:32
every day, every day. I'm not lying to you. I plunk this thing down, I put this I put this microphone in front of me. And I think this is going to be a someone just says, You're an asshole. I don't agree with you. Let's go, we're gonna have some great conversation about it. Maybe today will be that day.

Andy 55:47
There you go. So I mean, a couple of the stories were reflecting on you. I mentioned my wife, she was a pediatric nurse at the Children's Hospital went to on her specialty had been oncology for years, right? So get the get the surprising news that hey, you got to go down to the ER, and then hey, you're getting admitted. So it was this really bizarre situation, particularly for my wife that, you know, she's seeing physicians walking around, and they're all doing double takes with each other? Like, haven't you floated to this floor before? And so that was that was definitely just a bizarre situation. But then it also resulted in you know, it really good intention people but saying, oh, oh, yeah, you're a nurse here, you you know, all of this probably. And then they, they were literally going to cut short our education, because they're called we she's a nurse, like, you guys know this. But really, fortunately, Laura is like, my specialty is oncology, not diabetes and Endocrinology. So I don't know this, you should assume I don't know this. And in fact, I don't. So I give her a lot of credit for that. And and then we did we actually got a really good education, you know, the full whatever it was three day deal. Which I do I give our, our team in the hospital there. A lot of credit. I hear, obviously, unfortunately,

Scott Benner 57:17
bad stories, everybody gets, well, you know, what, to? Everybody's different? Is that a nice way of saying it? You know, like, even the things that I say on the podcast, what I said, you were like, Oh, that makes sense. And then you went and did it in the manner that I would hope that you would, but there are plenty of people who probably hear me and then go off and don't do it the right way. You know, like, and so then you get caught in that scenario where you're like, Well, what are we not gonna say it out loud, because some people aren't gonna understand it. Like, that doesn't make sense, right? Like, everybody's not going to be on the same, you know, starting level, and that doesn't mean that they don't get to hear the information. It's, it's it's the one thing you can't fix about this. You can't, you can't put everybody in the same place, and then tell them something and have them go off and have the same I mean, you have had an astonishing outcome with your daughter over and over again, like switching from MDI, to pumping from pumping, listen to podcasts and party, you just keep doing it. This thing, whatever this is, fits well with how you think. And that doesn't make you smarter or doesn't make somebody else stupid, or you know what I mean? It's it's a, it's just the situation you get into, and then they do the same thing in the hospital. Right? They're just like, here, here it is, like, I don't know, like, I'm sad. I'm upset. This isn't my vibe. I'm super artistic. I'm not good with math. Meanwhile, you don't have to be good with math. I'm my my major. Like I want to remember to say about you I'm super impressed at how you how you gave away the parts of your thinking that didn't that didn't jive with what you needed to do because I've I have talked to other people who beat their head through five concrete blocks not wanting to give up the idea that this is the carb ratio. Yeah, I mean, so I don't know why you hang on

Andy 59:16
to bits and pieces you know, I we got to scale in the kitchen I use it more than anybody else that but it's all good.

Scott Benner 59:23
And then I hear

Andy 59:26
you know, a couple of our other a couple things blew my mind while we were admitted there you know to start this journey. The first one being that I don't think we were ever sat down and presented a test result that said Your daughter has type one diabetes right so it all it all played out. Pediatrician couldn't you know was like I don't know what's going on. Let me do as an as they're putting on their coats to leave the pediatrician. And we had taken her in saying something's off. He goes You're not let me do it. Let me do a finger stick real quick. And so you progress from that. And obviously there's high blood sugars like they're all like, well, she you know, she has diabetes, so you need to go and but it blew my mind I there in the chart probably but we were never presented like, either these are the the the antibodies or whatever it is so one that just blew my mind have we just started acting that way, right? You just started giving her insulin. I thought that was a funny thing. And then the other one is the first time maybe it was on day one or day two, the nurse said, Okay, Dad, you know, it's your turn for this injection for lunch, maybe. And I was like, what? You were in the hospital? You're the you're the nurse. That's, that's what you do we come to the hospital for the medical people to do the medical things. Why would I do this and just being so naive at what, the next days, weeks, months years was gonna look like, but I look back on I mean, it was it was just so startling to hear that like what I mean, like, you know, a patio layer comes to your house and Gaza, here's how he puts the bricks down. Okay, you put the breaker turn. Oh, I'm not. So that was just so fun. We reflect

Scott Benner 1:01:20
we stopped in the commissary at the hospital when we were discharged. Because I think we didn't want to do the first shot not in the hospital. But then went downstairs bought food. And then we're sitting on those like horrible plastic chairs and I'm holding this needle like down on my knee to put it in her leg, you know, and, and I'm just like, I don't know what I'm doing. You know, like this is this is not going to work out well. And it does. You know, they may like it eventually works out well. But I take your point, like just Why are you involving me in this and that's when it hits you right? Oh my god, we're gonna leave here. Yeah, that lady is not coming with us enough to do. Yeah, it's gonna be us. Two o'clock in the morning. Um, I called that poor doctor in the middle of the night, the first night and I said, Arden's blood sugar is high. And I think I want to give her a half unit of insulin. And she's like, okay, and I'm like, Can I do that? And she goes, yeah. I was like, okay, she goes, What's the blood sugar? And I told her and she goes, yeah, go do it test again. And a little while and I was like, Alright, thank you. I'm sorry, I woke you up at three, four o'clock in the morning, you know, this lovely endocrinologist. But I didn't know what to do. I had no idea. So anyway. Alright, you want to pick a bone? Is that right? Yeah. Good. So

Andy 1:02:37
one thing I'm curious about? And again, I'm not I'm just curious about this. It's a question. You often will ask people particularly around basil. It's like, away from food and insulin. What's a number your your blood sugar will sit at? And I think you're often asking around, you know, is the Basal rate right? And I think I hear you describing it as you know, if their answer was well, yeah, I sit steady overnight. At 160 you might propose while your Basal isn't, isn't heavy enough there, but my my bone to pick with that is I'm thinking if that line is flat at whatever number it may be away from food or away from insulin. That's actually telling you your Basal is right at that time. You just need this shifted starting point. So I don't know

Scott Benner 1:03:32
this is my one of my favorite online arguments about diabetes. I have a couple of them. This is one of them. It's so oh my god, how did you pick on one of them that I love it unless you were gonna bring up the about diabetes at Disney and not being an it not being a disability. That is an argument. I also enjoy watching people. So here's what I think. I am in this odd scenario in people's minds, the Great and Powerful Oz. Okay. And they're coming to the Emerald City to ask a question. And I can't possibly know what the answer is. Like, I don't live with them. I don't see it happen over and over again. They're throwing a graph at me. And they're like, Hey, tell me everything that's wrong with my kids basil right now. So I asked the question away from active insulin away from a correction or an insulin you've used for food? Where does your blood sugar most often sit stable? And if it's a higher number, okay, what would happen next? If you corrected that number? Would it drop down and stay down? Or would it drop down and come back up? I'm trying to get them to think it through because I can't be sure of anything I'm saying. So the idea is, let's get away from active insulin first because then we're seeing stability right so the Basal is working on some level, are you at 150 Or are you at 75? If you're at 75, your basil is either great depending on what you want, or a little heavy, maybe Maybe you want your blood sugar to be a little higher, if it's at 150, and you want your blood sugar to be 150 than right on, but if you don't want it to be 150, here's the next question. If we just turned the basil up magically, would it bring you down to 130? And hold you there? Maybe? Also, maybe the basil is perfect. And you made a mistake earlier with a meal or there was fat in the meal that you didn't? Didn't think of. So then let's correct it and see, does it go down? And come back up? Or does it go down and stay down? If it goes down and comes back up? I think it's likely your Basal is not strong enough. If it goes down and stays down, then you did something in the past that maybe your basil is okay. I'm just trying to get people to think about it that way. Because in my mind, that's the simplest way to do it without basil testing. Because when you tell somebody to basil test, what they think is, oh, I'm not doing that. So

Andy 1:05:54
we haven't done that.

Scott Benner 1:05:55
Right, right. So I'm trying to get them to where they need to be. Because I think that the establishment tells them I can't answer that question Basal test. And they know damn, well, when you tell people to Basal test, they're not going to do it. So it's a cop out. So I didn't want to cop out on people when they asked the question. Another way of saying all this is are you more frequently stopping lows with carbs or highs with insulin? If you're more frequently stopping lows with carbs, maybe your Basal is too heavy, you know, it's not for sure, maybe you're screwing up your meal, insulin, and you're constantly having to stop it later. I don't know I'm not there. If I was there, I could figure it out in about an hour and a half. But I'm not I'm not there. And I can't be there. And what I've learned is people are not going to stop asking me this question. So does that make sense? And do you still think I'm wrong? Because you felt

Andy 1:06:50
it does make sense? And earlier you said our brains probably work differently? And I think that is the case on this point, I'll say, like diplomatically, say I think about it differently. To me, it's that point on particularly, where it tends to be away from insulin and food are those overnight hours, right? So let's say you know, midnight to five or whatever. To me that key question around Basil is, is it stable? So forget the number if it's able at 70? If it's stable at 100, or 150? If it's stable, right, that rate of change of the blood sugar. That to me is answering the question on the basil, because let's say it's stable at 150 Most of the time, you know, overnight hours. And you you increase that basil, I think what you could end up with is you've actually just been slightly missing your, say, a dinner Bolus, but then you sit stable because the basil keeps you right there. And if you increase that, basil, you're actually going to get a declining line, right? Like a slow down hill, right overnight. Now, is that good? Is that bringing your blood sugar down? Yes. But I'd really rather just sit stable at like, 98.

Scott Benner 1:08:02
No, me too. Yeah, I think that's a great number. Also, there's more to consider when you're talking to masses of people. So if this conversation is between you and I, I think yeah, that makes sense. Because you see this input of data, and then you make more decisions, right? You don't just stop, whereas most people are just they don't want. I hate to say this, but most people don't want the level of granularity that you're interested in. They just want it to work. They don't have the time, the interest or the ability to think it through to the nth degree. And they're looking for what works. So you go back to old days, and MDI, when they knew people weren't bolusing for their food, their food, they would just keep jacking up their Basal, because they're like, they'd be like, Look, this guy is never going to give himself insulin for food. So what are we going to do to try to keep them alive as long as we can? Is that the right way to do it? It's not, it ended up being the best thing they could do for that person. And so my expectation is, anybody who thinks that the podcast is some set of rules set in stone, and if you just do it, everything works out, right? I don't intend it that way. I'm telling you, this is how we do it. And then once you do it that way, you probably are going to then take it and adapt it to the way your body works, your exercise schedule, the way your brain thinks about things. There's a lot more coming that I'll never have any input on. And, and what I think I've done, if I'm gonna give myself credit for something, is I think I found a medium is medium, the right word, where nobody is screwed, and everybody has a chance to do better. That's what I think the information I shared does, I think it doesn't, it isn't going to screw you up. And depending on how far you want to dig into it, you can do better and better and better. Yeah, yeah, that's all I because I as I look back on it, in the very beginning, I was like, Well, I know if I do this, this works, but it's not going to work that way for everybody. So then what most people did in the space? Or what most people do in any space is they go, Okay, there's no answer, we're not going to do anything. We're not going to help people. And I just thought, like, that can't be okay. Like, there's got to be a way to adapt this enough that it helps somebody. So if I get to the person who's got an 11, a one C, who listens to the podcast now has an eight a one C, that's terrific. If they never do better than that. I still took three points out of their a one C, you know, if I take somebody from a seven to a five and a half, that's great. You know, but it's also why I love the the idea of the algorithms because you put an algorithm on somebody, and just give it that Omnipod five is a great example. Because it is a really hands off device, you really do not need to know anything about how it works, right? You put it on somebody. And some people say, Oh, it's better. My Awan sees this now, but I still have high blood sugars. But I want the thing to take care of it. So they won't Bolus it. Whereas you looked at it. You're like, I don't give a shit how this thing works. I'm not letting my kids blood sugar be 180. I'm giving her more insulin again. Right? Everybody's different. And I can't be with everybody. So I just tried to find a middle that helps as many people as possible, if that makes sense.

Andy 1:11:15
It does. And undoubtedly, you do help a ton of people. We obviously hear that a bunch. I have the data that backs it up. I may have to put these graphs out there when this airs. I do have a prediction. I'll be right about 880 ish. Absolute number. That's That's my guess.

Scott Benner 1:11:34
So well, no, you're way off on this. Andy, I'm putting this out really quick. Well, because why? Couple things. Here's why. I think our conversation should make people interested in looking into on the pod five, and I want people to be healthy. So I want to get that out quickly. I also think that your charts really highlight that my podcast works really well. I'd like that to get out into the world as quickly as possible. Not I don't, it's not for me, I enjoy that. It's true. Like I have to admit, when I looked at this graph, I was like, wow, it just made me feel. I don't know, it gave me some like justification. You don't I mean, I was like, wow, this is this isn't just how I like this isn't just me thinking like somebody went and plotted points and it shows like, if you want if you want to do as well as you can, with your time and range, you should either listen to this podcast or get an on the pot five, like that's what I'm looking at here. And that's to say that the words inside of this podcast are slightly mimicking an algorithm for people's. I'm just, I'm proud of that. Yeah. And if it really is true, then it should be out there. So people knows they can do better. Because the difference between your daughter's outcomes, MDI and Dexcom versus Omnipod, and Dexcom versus Omnipod, Dexcom. The podcast are, I mean, it's substantial. It's a big difference for her in her health and her happiness. So that's what I want people to know. You know, me too. Yeah. Cool. All right. That was it. That was your bone. I don't talk too much. You don't hate my accent? You think I'm an idiot? Nothing like that. All right, maybe one day, I, I, by the way, just try to imagine, I will actually have the conversation. If it ever happens. I'm not going to back away from it. It's going to turn into like a giant screaming match. I think it's going to be incredibly entertaining.

Andy 1:13:34
We need to get those people that come on,

Scott Benner 1:13:37
I need somebody to call me call me names and like to have a real conversation about that. And so

Andy 1:13:42
I just think I just think you asked the basil question wrong. That's all.

Scott Benner 1:13:46
So so how would you ask the Basal question? Yeah.

Andy 1:13:49
So I would ask the basic question. You know, similarly when away from food when away from impacts of food, or you know, Bolus insulin of any kind? Does your blood sugar stable consistently? At any number? And it's really about that rate, right? So it does the does the Dexcom graph look flat and horizontal? Or is it slowly climbing up a hill or slowly going down? And

Scott Benner 1:14:15
let me ask you a question. If the person's blood sugar overnight, in your example, keeping in mind by the way that your kid does not have the hormonal impact that a lot of other people have because of her age. If your kids blood sugar was super stable at 225, overnight, which you think or basil was okay. Yes. What if you corrected it? It went down that went back up to 25. Again, yeah, then something would be off. Okay. Sure. So you just don't like the way I phrase it? That's right. You don't even disagree with what I'm saying very much. You just don't like my entree into the conversation.

Andy 1:14:47
That's right. Yeah. You just asked that question differently.

Scott Benner 1:14:50
I've had there's a part I wish I knew her name. She argues with me on every time I say it online. She comes in and she's like, You're wrong. And I was like, Oh, here we go. And and I love the conversation. I wish I could explain to her how much I enjoy the conversation. Because the truth is, is that in this specific scenario, while we're talking online, either I'm right or she's right. It's one or the other. Either it's the Basal or it's something from before bed insulin to carb ratio, carb counting, etc, etc. It's always one or the other it when this question is being asked, but it's almost like politics, because the person who comes in to argue with me always acts like it couldn't possibly be the basil. And I think that comes from their personal experience. And I don't I I've had enough experience talking to people that I don't really I try to come in very down the middle. Like, I don't assume it's one or the other. And I think and I think, I don't know, it's just it's one of the great diabetes arguments. I love them. We should make a list of them one day. Yeah, yeah. All right. Well, Andy, hold on one second. I appreciate you doing this very much. And let me tell you about when this is gonna go up so you can prepare yourself. Sounds good. Thank you. Thank you.

Huge thanks to Andy and if you're hearing this in the first week of its release, you should probably go check out the private Facebook group because Andy's gonna put his charts in there. I want to thank Dexcom, makers of the Dexcom G six continuous glucose monitor and remind you that you may be eligible for a free 10 day trial the Dexcom G six dexcom.com forward slash juice box. Get your diabetes supplies from us med either call 888-721-1514 or go to us med.com forward slash juice box get your free benefits check and get started today with us med.

Thank you so much for listening and for supporting the podcast. Please subscribe or follow in an audio app like Spotify, Apple podcasts, Amazon music, something like that, whatever you use. And don't forget to tell a friend about the Juicebox Podcast. Thank you so much for listening. I'll be back very soon with another episode.

#760 After Dark: Jon

Jon has type 1 diabetes and an incredible life story.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello, and welcome to another episode of The Juicebox Podcast. This is episode 760.

Today I'm going to be doing an after dark episode with Jonathan. And Jonathan reveals so much about his life and his life with type one diabetes that I don't rightly know how to title this episode. It's definitely an after dark though, you're gonna have to listen to find out more. 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 healthcare plan, or becoming bold with insulin. If you enjoy this after dark episode, there are almost 30 others ranging from drinking to weed smoking, eating disorders, drug use everything. You can find a complete list of them on the Juicebox Podcast Facebook page in the feature tab, or go into your podcast player and search juice box. One word podcast after dark after dark two words they should all pop right up in front of you. By the way, I'm looking for a serious weed smoker with a great a onesie to be on the show. Reach out if that's you if you enjoy the Juicebox Podcast and moreover enjoy that it's free and plentiful. You have a few people to thank for that those people are the advertisers Dexcom on the pod G vo Capo pen, the Contour Next One blood glucose meter us med touched by type one. And in pen from Medtronic diabetes. You can find a list of all the sponsors at juicebox podcast.com Or in the show notes of your podcast player. But today's episode of The Juicebox Podcast is sponsored by Omni pod five. Learn more about the Omni pod five at Omni pod.com forward slash Juicebox Podcast is also sponsored today. By the Contour Next One blood glucose meter get the blood glucose meter that my daughter carries. Yes. Tour next.com forward slash juice box.

Jon 2:28
Okay. My name is John. I'm a type one diabetics living on the East Coast for 43 years. And I'm a social scientists and musician dad recovered alcoholic and drug addict and currently am suffering through autonomic neuropathy and gastric release.

Scott Benner 2:54
Okay. Well, that just gives us plenty to talk about, John. Yeah, yeah, yeah. Yeah. How old were you when you're diagnosed?

Jon 3:02
Three years old.

Scott Benner 3:03
Wow. 14 years old. Is that? Is that 82?

Jon 3:07
Ah, 7979. Wow.

Scott Benner 3:12
Oh, I'm sorry. I did the wrong math. 79. Okay. Three years old. 1979. Diagnosed back then. I think we know the story, right? You were using? Probably, gosh, regular. Did your parents ever talk to you about this? You know what it was like? It was?

Jon 3:32
I really I have there's vignettes of it that I remember. There was there is a series of events. The first was that my father's mother had passed away. And it was when we were transitioning from moving in a transition. You're moving from Texas to Michigan. And on the way I got really sick. So we had a family member just die. And you know, I got really really sick. And shortly after recovering from that virus I was peeing all the time, just constantly urination Bedwetting, and these kinds of things, right. So my parents didn't really know what was happening from and they did not talk about it. They actually use like corporal punishment to try to get me to stop urinating know that kind of thing. They were kind of fundamentally like you're not adjusting to the stressful time like you should you need to keep up mentality. They were they were under a lot of pressure to so they use a little force to try to get things calmed down, but it just wasn't turning around. Right.

Scott Benner 4:46
You were three for perspective. I was three. Yeah, yeah. Gotcha. Are you there? Are you there first kid. No chance. No, I'm in the middle in the middle. Alright, yeah. Okay. So yeah, so when when hitting you didn't make you stop paying then what happened?

Jon 5:03
Well, we ended up fortunately we ended up in Michigan, we were in Northwest Michigan, which now has just exploded. If you've if you've ever been up there, there's a lot of Great Lakes brings in a lot of people, a lot of Clearwater pride around this time there was not that many people there. So fortunately for us, there was a doctor who was affiliated with you of them. And so as soon as they brought me in, he knew he was like, type one diabetes. Yeah, let's get him checked immediately. That quick?

Scott Benner 5:40
Yeah, real quick. Yeah. John, does the microphone go any closer to your mouth?

Jon 5:43
Sure. Sure. I can position. How's that? Is that better?

Scott Benner 5:48
I'm not sure on these your talk for a minute. But the doctor just upon seeing you thought this is type one,

Jon 5:55
running down the symptoms of what had happened and the duration he was just, you know, we that's the first test we need to run. Right. Okay. And it just was, you know, top of his list. And you have am, as I came to understand, it always had a pretty good med med program. So that was not surprising. In reflection, I was like, wow, we really got lucky because this was kind of the boonies, where we moved, I say, I was just out back, rural Michigan. And so I ended up in the hospital, and on IVs, and things and I remember the beds, the beds were really interesting, because it was kind of I couldn't figure it out, they had the bars to keep you from rolling out. So it looked kind of like a cage. But to me, it looked playground ish, I remember having that thought. And my folks were just devastated. Like, I have vignettes of watching my mother, like, be hit with waves of just just emotion falling apart, I don't know what kind of name to put on, it just kind of really rocked her. And getting pep talks from my dad, like, we're gonna have to deal with this. You know, I'm gonna give you this injection, it's going to happen every day, you know, we had to go through them learning how to inject insulin. And fortunately, the doctor was really, really honest on his toes. And he was familiar with treatment at that time, which was very routine based portions of food timing of insulin, you know. But other than that, it was like p&l sticks. Yeah. If you tried to do move outside of the bounds of the of the program. Um, so yeah, those are the first memories.

Scott Benner 7:56
Right? That's fascinating that you recall anything from that time? Really? Yeah. I don't even I don't know. I'm starting to wonder even about my memories in general, I'm starting to think that my memories are just from photos that I see more frequently than other photos. I don't even I don't even know like I you know, I key in on certain things that happened when I was younger that I feel like I remember. But now if I look back, there's a photo of it. And someone told me a story about it. And it's just very interesting how that all how that works. Because I don't think I remember a damn thing from when I was three years old. Not

Jon 8:34
at all. Yeah, yeah. It's not a lot. But he's, you know, these these moments were like, really, really high stress. And the information is bolstered. Very verified to asking questions about it. Like I've hit my parents. I've been like, do you recall? Was this true? What was you know, what happened? Did? Was mom unable to give me that first shot herself?

Scott Benner 9:01
Stuff that you think you remember? You're not sure of them? They? Yeah, they can kind of come in and back it up for you one way or the other?

Jon 9:07
Yeah. Yeah. They verified it. I mean, at the same time, you know, I'm a really, really delicately wired individual.

Scott Benner 9:17
How so? How so just

Jon 9:20
while just stress has always been a prime component in my foundation. So my attention, you know, with your average stress, your response comes like a hyperfocus. Attending to things in your environment. And I've always been a guy who's looking for the next hit to come, you know. Even just meeting people like I pre I Bolus before we were talking because talking to strangers will shoot me up to 200. If I

Scott Benner 9:54
don't, you're anxious right now. Am I right?

Jon 9:58
We always Yeah, just Talking to people right could be us playing guitar in the park and harmless 91 year old man came to talk to me four days ago and my blood sugar shot up to 200 You know, always due to anxiety always been like that. As long Yeah, yeah, yeah, that's, uh, that borrowed that phrase from really, really nicely. I thought that was a good way to put it that yeah, just really delicately wired. Like,

Scott Benner 10:32
no, I understand what you mean. I do. So. So this is your whole life, diabetes, and you're doing things very old fashioned ways. I would imagine you don't get to faster acting insulin for probably cheese. 10 years maybe? Yeah. Is that right? Yeah, I

Jon 10:53
was on, you know, pure pork. You know, NPH long, you know, the story of the waves. And the timing the waves of peaks and these kinds of things and eating around them. Yeah. And blood testing only happen when you went to the hospital for a really long time. Right?

Scott Benner 11:14
in that in that 10 year timeframe. Did you ever experience dangerous lows or anything like that?

Jon 11:22
Constantly, constantly. Night terrors were a regular occurrence? And you know, a couple of seizures

Scott Benner 11:34
from low blood sugars. Yes, yeah.

Jon 11:37
Yeah, these kinds of things. And by the time we hit pubescence, it really, really, really got hectic.

Scott Benner 11:46
Is this win? Like, is this when like, the other part of your story kicks in? Like I'm trying to figure out? I'm looking at the things you talked about when you first came on? And, and the list of things that you sent me here? You know, so, like, it looks like drugs and alcohol. Was there some self harm?

Jon 12:05
Yes. Yes, yes. I've carved things into myself in high school, attempted suicide, three occasions?

Scott Benner 12:19
And when does that when does that begin for you? Like, when does that turn happen?

Jon 12:24
Um, you know, I think it's just the bag got too heavy, but I was aware of it filling pretty early on. You know, I think the circumstances, I don't want to point the finger of blame at anybody, because humans are just really, really complicated. And if you're around long enough, I think some of those knots become on tie, right? So always hold out. Hold out for hope. But, you know, my dad was like, Vietnam vet and former police officer who had gotten two PhDs in psychology. So he's, like, really complex individual, he's really, really violent. You know, my mother. And her family did not get along, there's not like a lot of support. There's a lot of silence and willpower. And for a person kind of composed, like I am, that just doesn't work really well. Like I would say, I would characterize myself as a tough individual, and, you know, have a deep well of willpower, but the use of force threats, you know, these kinds of things like I've never been about that, right, but that was in the house a lot of time and that started filling the bag up and it was diabetes centric, you know. So like I remember i i still like a bear claw. Okay, out of it wasn't Dunkin Donuts at the time was the different donut company that later became Dunkin. But I still a bear claw and I remember you know, getting picked up by the throat and slammed into the drywall and breaking even punches thrown in my head Chuck across the room, you know, that kind of thing. For you know, getting out of the routine, stepping out of the routine.

Scott Benner 14:33
And you can you tell me how old you are around that

Jon 14:38
as like eight or nine. Okay,

Scott Benner 14:40
so you stole a doughnut. And you got you got your ass kicked?

Jon 14:46
A Yeah, I think I think as theft is, isn't it? I mean, I don't know why I characterize it as stealing. I gotta think on that one. But it was communal doughnuts for the family.

Scott Benner 14:56
Oh, wait a minute. Oh, I'm sorry. John, I Had you like a ninja slipping into a donut shop? Yeah. So this is at the house. This is just a box of doughnuts.

Jon 15:08
Yeah, this is a box of doughnuts. It's a community pile. I don't have no idea that's interesting that I was like I stole it. But it was it was the family box of doughnuts. And I was like, today's the day, the bear claw was mine. I'm gonna taste what that glaze does. And so I took it out of the box, and I stuffed it under my shirt, which is really uncomfortable with all that. And my dad's like, he was like, intelligence officer, you know, and he's a former cop. So he like stopped me from the woods watching me pick my head out to eat it. Right. And I heard in the leaves crunched and I chucked it under the stairs at the back of the back door. We had not built a patio yet. This is when stairs I just chucked it like a Frisbee right? He calmly walked over and picked it out, looked at it. He's like in the house. went up to the room and just Yeah, I got beat up a little bit. For that.

Scott Benner 16:14
John, do you think? Well, a couple of questions. Sure. Were there always doughnuts in the house and you just weren't allowed to have them?

Jon 16:23
As I got older, and the science evolved, you know, because your time during this era. Your even your Basal dose had a long contours still does. But but we're talking hours. Yeah. Right. So you can't stack insulin. You know, there wasn't advice, right? Because then then you're like, you're going to the waves are gonna double up on you. It's gonna get closed out and you're gonna just die. Yeah, get pounded. Right. So there's no adjustment. So back in this time, that was the program as things evolved. I was like, allowed plain doughnuts.

Scott Benner 17:04
So in the in your memory? Is it the is it the taking of the donut? The sneaking, is it the eating something that they thought he thought was going to impact you poorly? Or was it him losing a doughnut? Like do you have any context for what he was mad about?

Jon 17:25
I think it's fear. You know, if I look at I think if I look at you know, the way a lot of our people are wired. Fear is a driving thing. And and it's a regulator. And it's adapted to keep control. And I believe that he saw me as a something that needed to remain viable and that I was compromising my own viability.

Scott Benner 17:57
Okay, so eating the Doughnut was going to hurt you. He needs to scare you into not eating that doughnut, precisely. But you describe yourself as needing the exact opposite input from somebody.

Jon 18:10
Yeah, it kind of, you know, again, it's the 80s We had neighbors doing cocaine and we didn't know it. You know, like, there was a bunch of stuff going on with adults. Bootstrap theory was huge, running rampant. You know, like, pull yourself up. You know, Swartz, Nagar and Rambo are like, on TV, right? They're all like, pumped up. And like be a man do it. So there wasn't a lot of talking. There wasn't a lot. A lot of coaching.

Scott Benner 18:41
Yeah, no, I was alive then to John. I know.

Jon 18:46
Yes, yeah. Yeah,

Scott Benner 18:48
I'm aware of, of how force was used to, I guess, create compliance. And then compliance was somehow seen as the end result, like nobody was trying to teach you anything or or change your mind. They were just trying to put you in a position where you wouldn't do it again.

Jon 19:13
Yes. It does. Yeah, it's absolutely true. And the I think the the ancestral culture feeding into that, too, was one of children not really being led, like you're working on the farm. Accident. So are your teachers. Right? Yeah. You know, lose a finger. It won't happen again. This was not outside the realm of everyone's experience. Yeah,

Scott Benner 19:43
it is an interesting conversation. It's not really for today, but that, as the world gets easier, and people's lives get easier, they do have fewer and fewer teachable moments. And there is no one I mean, in another generation or so there won't even be enough. I get the way I'm saying this is gonna come off wrong for a second. I'm not saying we need more of your dad. I'm not saying that. But what I am saying is that guys, like your dad are gonna be gone pretty soon. Yeah, you know what I mean? And, and maybe that's good. And maybe it's a, maybe it would have just been better if your dad would have understood better how to handle you, but still had a kernel of that idea in his head of, you know, you do need to teach people to how to how to steal themselves up and how to how to be responsible for themselves. Like there's a balance in there. Obviously, we don't want we don't want responsibility and fortitude to come from you ending up in the dining room from the den. You don't I mean, but, but but but somebody, but where does that come from? I'm a parent. And I, I've wondered about it for years, like, Where do my kids get their experiences from? And now, you know, every kid you talked to seems to say that they're anxious, or they feel stress. And, and I mean, I don't, I didn't know what anxiety or stress was, I'm sure I had it. But I wasn't aware of what it was as a child. I mean, if you would have asked me as a kid, do you feel anxious? I don't know that I would have known what you were talking about. And now I don't think you can find a kid who is not aware of that.

Jon 21:23
Yeah, that's, you know, to be honest, I didn't know I was anxious until 10 years ago, I don't know what that was called. Yeah, the vernacular, the attention, the coaching the, in the conditions, you know, to treat it, to deal with it, acknowledge it, you know, all those things have changed drastically,

Scott Benner 21:45
right? And so there's a moment in your life where someone, you needed someone an adult, to see your situation? And say, Wow, John, is I mean, I don't know what they would have called it back, then they probably would have said, John looks nervous, you don't even know or something. I don't know what word they would have used. But he could use a hand here. And not a hand in his head, you know, but but a helping hand. And then when that doesn't come, is that when you start self medicating yourself?

Jon 22:14
Well, it just Yeah, I think, you know, I didn't I don't know I kind of read resigned myself, in part, I had these. Every time I was hospitalized, I had these conversations with myself. You know, I had some rough stretches that ended up in the hospital, I would have these conversations about tapping into my own will to persevere, to get myself through it. And every time I did that, I took more mental responsibility off my parents, because I saw how it impacted them. You know, they're like missing work or their stress. Or they'd be like, you're sick again, you know, this kind of thing. And I was like, well, that's not good for me. And it's not good for them. Yeah. So I'm just going to go ahead and do it. I never thought that it was anyone else's responsibility or hoped for that, or, and not necessarily. Responsibility isn't the best word. But I never thought I needed help. You know, at the same time, I would find myself sometimes going to bed saying Help, Help Help Help Help over the, you know, the over periods of

Scott Benner 23:26
time, just under your breath, really? Just under your breath. I need some Yeah, yeah, yeah.

Jon 23:30
And you know, I was having panic attacks, right. And I'm like, I don't but I didn't know what that was. But I would say that or you know, had these little spurts of compulsive behavior right?

Scott Benner 23:41
For instance. Give an example

Jon 23:45
well, just with having conversations in my head about how I didn't do something right or control the situation well enough bad grade was late. Pick the wrong belt shoes aren't tied and start talking to myself you know, so I was not really well received socially. Okay, no, and under those conditions I just I thought that the way forward was just You just continue to well through it and you'll be alright. Yeah. Well, I think it would have been ideal to have an adult there to be like hey man

Scott Benner 24:25
Yeah, I'm asking in hindsight like what does the alternative to I mean, obviously what you were told just get get get past it get over it for keep fighting. But do you have any gift children now yourself? I do. I have to All right. So what would you tell them in that situation? If they were in your situation?

Jon 24:46
That you my first thought was was to just not even have them in that situation? I would, I would never create conditions or be like, I'd be like if you encounter any of these, right? Well, what if they Toxic ideas get get out of there. And well, what if they just felt like they were failing something? And it was that it does happen?

Scott Benner 25:07
Yeah, right.

Jon 25:09
Yeah, that's I just tell them that failure is the is very, very significant and important part of life, it's like, embrace it holy.

Scott Benner 25:20
Do you think people believe that when you tell them that?

Jon 25:23
No, but the, I think over the years, what's theoretically turned out to be true is if you have it in the body, somewhere where they can experience it in their body, I'm not talking about abuse, like hating people, like you feel bad, you know, bad stimulus. But fortunately, both of my kids are athletes. My son's a rock climber, for example. So he knows about process and he'll, you know, hit. Don't try to tackle and problem on the rocks. And it'll take him sometimes two or three weeks of falling off just trying to get that one hole. Yeah. But then he finally sends it. And if I feel like if you have things like that in your life to, for me, the physical component was huge to actually embody it, the process of failure and transforming that into an understanding, I don't want to say success, just an understanding of what wasn't there before and how you move forward. And that's great. And both the kids have that. And they have me on the side, saying what I just said to you, and I really verbose and annoying. So I you know, that's another thing. I think that adds stress to him. You know,

Scott Benner 26:49
you think you talk too much. Oh, yeah, way too much. Do you have a feeling like you know, how things can go wrong? And you want to make sure people understand what those pads are? So they don't take them?

Jon 27:03
Oh, absolutely. Yeah. Yeah. Yeah, that's, that's definitely part of

Scott Benner 27:08
the fuel. It's crazy, though. Because they still have to have their own experiences.

Jon 27:12
They can't fall out of the tree no matter what we do. Yeah. John, it's one of the real,

Scott Benner 27:18
it's one of the real shortcomings of human beings, is the thing is that they can't just be pointed backwards for five seconds and said, Hey, look, do you see this tail of, you know, of Whoa, here, don't do that. If you don't do that you can skip this whole part of life and move on to this thing. And, and we can't we can't do that. Like, it's just not, you know, it's not, I don't know, it just doesn't work for some reason i You can you can explain things. Try to put them into context. You can, you know, bring them up in the moment when they happen. And still at all, I don't think that in that moment, you can turn someone ship for them. I think, you know, I think you can show them the you can show them the skyline, right? So they can look out and and see the what is it the horizon line and think, Okay, well, maybe there is something out there that I can't see right now. But he might be right, that's the direction to go in. And you have to, you have to hope that something you say today impacts them in the future, because it just very nothing works like a television show. Like nobody has an aha moment where they're like, Oh, my God, the old man in the park was right. I could go home and apologize to my mom right now. Yeah, that just doesn't work. But at the same time, you know, I heard you say it earlier, you tried to put your dad in the context, you know, veteran of a terrible of a terrible war, and a police officer on top of that. So his job was even to tell people what to do. And in his line of work, I'm gonna guess if people don't listen, they die. And, and if you're forceful enough with people they listen, those seem like those were probably his his lessons.

Jon 29:05
Yes, yes. And the longer you're at, I think, the longer that you're in that position, and that's in the exact account. And I think it's, you know, the longer you're in it, the more you're going to get burned out. Your patience is going to shorten it, I'm sure. Do you think yeah, it happened to him? Yeah. Do

Scott Benner 29:26
you think he had PTSD? From fighting? Oh, yeah.

Jon 29:29
We used to, you know, I used to come out to use the bathroom at like, 3am. And he'd be crouched behind the couch looking for Charlie. Oh, my God, you know? Yeah. You know, and my mom would have to come out and wake him up. If you went up to him and public without signaling like, Hey, Dad, if you just touched him, you'd have an elbow. Two inches from your face. He

Scott Benner 29:54
was he was always ready to fight. Yeah,

Jon 29:56
yeah, yeah, yeah. You just you know, Oh really, really tightly wound for good reason.

Scott Benner 30:06
Yeah, I'm not sticking up for him, John, but you put me in that jungle and have people shoot at me I'd be tightly wound so yeah, yeah, so yeah, absolutely yeah. So when so what comes first? Does the self harm come first or does the drinking come first

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well, just kidding. Drinking, right.

Jon 34:29
Yeah, yeah, you know, there was like, the bad guy to fool and the agreements that I was making about taking responsibility for myself and taking it away from other people mentally, you couldn't hold it up, couldn't hold it up. And there was all this new information, you know, and I was already aware, like, especially like, you take your common primate experience of being like, I'm attracted to that person. Like, you know, girls, right This kind of thing. I felt like a little bit like Frankenstein's monster, like that thought setting, you know, the conflict between transforming nature and nature's expression, should I be here? Or should I not? We're messing around, we're harvesting, you know, animal body parts to make fluids for you. And why? You know, this kind of thing.

Scott Benner 35:25
You had good real thoughts about that. You were supposed to not exist.

Jon 35:31
Oh, yeah, yeah. Yeah, I was like, my body's trying to kill me. And why are we fighting it? Yeah. And then I started reading the literature, you know, the, the, you know, alienation conflicts with modernity, right? Transforming nature and transforming ourselves and the consequences. Let's start diving into that when I was like, 13. And then right about then I started stealing cigarettes from my mom. And this is night, we, you know, behind all of this, we're talking about peeing on sticks and like really poorly calibrated blood meters, right.

Scott Benner 36:12
So not only are you having an existential ideas, 13 Which by the way, you might have been the only 13 year old that shouldn't have had a library card, but that's fine. But on top of that, your day to day slog is, it's not fun. And it's not particularly helpful to you either, because it sounds like your blood sugars are bouncing all over the place.

Jon 36:35
Oh, man. Yeah, that was a significant side of rebellion. I have a friend still who's you know, I'm 46. He's 46. He's like, you still eating peanut m&ms, because I used to sneak down in m&ms Whenever we get out of the house, like, I would have the money in my pocket, you know? And who knows, I know now what that probably did to me mentally. Yeah. Because again, the body is just primary, like, being able to have the most optimal state of affairs inside. And in terms of like, your just physical baseline, just, it's so important. And extends to everything. I believe that. And back then I just, I had no concept. So as doing that, stealing cigarettes, and you know, listening to Jimi Hendrix, constantly playing guitar, learning how to play Jimi Hendrix. And then so marijuana came in through the door. And then it was just off to the races. I was supposed to go to college and gotten this huge conflict with my father. And mind you. I was so mentally steeled that I was alone. And this was my deal that people used to, you know, like, yell at me threaten me at this point. And I'd be like, just ignore, you know, and they'd be like, this punishment, that punishment. Like I don't even care. Go ahead.

Scott Benner 38:10
Right. You're an island and they can't touch you.

Jon 38:14
Yep. Right. Yep. It's, I'm alone.

Scott Benner 38:17
It's interesting that that started out of your concern for your parents. And then to see where it went to, is disturbing, really, you know, in hindsight, as a person who raised children, so at first, you're like, let me just, this thing's a mess. It's a mess. For me, it's a mess for them. While I'm like just make it a mess for me cut them a break. And then obviously, you're too young to take on all that on your own. You needed other people to help shoulder the burden for you. And, and then by the time you realize you couldn't do it, it was you didn't have anywhere else to move the load to know so you had to find a way for it to feel lighter without putting it down. I mean, yeah, yeah.

Jon 39:03
Yeah. Yeah, that's accurate. Okay. There wasn't even a language. I couldn't even tell you like, this is just too hard. Yeah. There's just no everything was just wallowing in

Scott Benner 39:14
your a teapot with no with no place for the steam to come out.

Jon 39:18
That's it. Yeah, that's it. Yeah. Wow. It really escalated and, and I started having these kind of see scenarios, play out with the parents where we would just say, my mother would be like, I can't deal with him. My father would be like, my father was out on the road like having affairs and working 60 hours a week. So some when he came back, he was like, I'm not dealing with this.

Scott Benner 39:50
Yeah, I'm given other ladies babies with diabetes. Give me a second here.

Jon 39:54
Yeah, it just, you know, you're just like, my god. No one wants to deal and again, symptom of the same thing you just mentioned, like they didn't know how to get rid of their own skin. They didn't even know. If I asked my mother now, if she was ever anxious, she'd be like, no, no,

Scott Benner 40:15
but she was constantly. She's a case. Yeah, sucking on those cigarettes and trying to keep it all together. And I'll tell you, I know, this is generalizing, and everybody doesn't fit this category. But we might be the first generation of men, you and I, at our age, who grew up with some sort of an expectation that we had to be nice to the women we were with. But like, seriously, like, my dad did the same exact thing. Like the second like anything was like, well, this isn't fun. He's like, I'll just go have sex with different women instead of this lady. And, and it just, it was, it's commonplace. I'm not certain it's not commonplace. Now. I'm not, you know, I don't know. I do know people who I mean, I know cheating still fairly. You know, I'm sure it happens. I don't know if it's a coin flip as to whether or not you're being cheated on. But I know you have a decent chance of it happening. But that idea of that that time, it's just something that people won't know if they weren't there. Like there was a time I think I've said it on here before but my, my dad disagreed with something I was saying, I don't even remember what it was. And he wanted me to agree with him. And I held my ground. And he just hit me, and then would ask me after he hit me each time, if I changed my mind or not. Oh, man. Sounds pretty bad. Yeah. And then I fell like I tripped. I think he hit me once and I stumbled over coffee table maybe. And I ended up on the floor. And I remember thinking, Oh, well, here's some respite. He can't reach me. But then he just decided to use his foot instead. And it was and I remember looking up at my mom, who was just in a corner scared out of her mind. And I thought, well, she's not going to help me. And now I have to make a decision. Am I going to tell him what he wants to hear? Or am I going to? I mean, I already took it. Like, why would I give up now? You don't? I mean? Yeah. And so I know how you grew up, man. Like, I don't know, as you're talking, I think to myself, I don't know why I didn't end up drinking in high. It's unfortunate.

Jon 42:21
You're unfortunate. I mean, like that. You're unfortunate that that hurts me to hear. And I don't mean that like you shouldn't have said it. But I mean, that just, I'm so sorry.

Scott Benner 42:31
Yeah, you have real context for it. Like that's just really rough, man. Yeah, no, I appreciate it. It's it's I do I appreciate your your your kind words. I don't know if I'm, I don't even know if Okay, is the right word. Yeah. Right. Like, all I know, is it made me not want to be like him in like that. And I tried very hard not to put that on my family as I got older. But I'll tell you that without my wife, there were pas I would have absolutely tumbled down, because I just didn't know what better way. Like I'd be surprised if the first time one of your kids got crazy. It didn't occur to you to smack them. Because it probably felt like what you do in that situation.

Jon 43:17
You know, those? I feel like those. Yeah, it's I feel like those there's a sense of of rebellion that drives my behavior now to try to transform the situation that it's definitely true. It's the chicken or the egg argument was I suppose to such talk to toxic scenarios, toxic and sense that they felt so far Well, to me that I wanted to change my life. Or if I just naturally was kind of like a peace loving guy. And I've, I've explored both and their extremes, you know, and what do you I just gotta, I just gotta say, I do not like seeing people get hurt. I just don't. I just never have it sickens me to think of not only powerless, powerless individuals, but even, you know, people that you don't like taking a hard hit. I'm just not wired like that.

Scott Benner 44:18
And, Jonathan, I can tell you that I saw, I witnessed my mom cry once after my dad left her. And that one experience that one evening of my life. I couldn't. I couldn't do that to a woman for anything. Yeah, I couldn't bring myself to do it. Like, I'm gonna tell you right now. If my wife was downstairs right now with 10 Guys, and a table full of blow and and lied to me every day about who she was, and then came to me and said, Guess what? I have sex with everybody in the neighborhood, and I'm a heroin addict. And I be like, I couldn't leave I couldn't like I know I couldn't. Because it just because I had that one moment. Like, I saw my mom crumble like she was lower than a person should be. And it broke her. And I don't want to be responsible for making someone feel that way.

Jon 45:18
Now, now me mean either I think that extends to kids too. You know, like, I intuit that especially my son is a lot like I am a lot of the males in the family seem to have that kind of fear based thing is it cultures of biology, I, you know, probably a little bit of both. But the experience of those things, seeing scenarios, you know, like you're describing human through all you know, and with the OCD and perfectionist contour that came with the weird mental exercises to survive. I've just pushed myself to try to stay as far away from that ledge as I can. And do I see it there when the anger really rears up? Yes. Have I raised my voice Absolutely. ever put my hands on people or wanting to you know manhandle them in any way. Never. Never. I just and you know, contact sports violence sports, were a part of my therapy to try to find out who I was to later after I got sober.

Scott Benner 46:44
Well, when did tell me about a little bit about that, that journey. So you said cigarettes weed, then it exploded? From there for context would you go to next.

Jon 46:56
Um, so I had this big fight with my dad. And I ran away. I ran away, I actually took some stuff of his and I pawned it for drugs. And this was like when I was 18. And I ended up eating these mushrooms. And going out in this cherry field and walking around for like six hours, saying, I just want to be good. I just want to be good. I just wanted to get when I came down, I was like, I can't do that here. And this was actually the second time I left first time, I just ran away to East Lansing. And then started smoking and drinking and running with my college aged kids and then realizing like they had lives, they had classes. I thought I'm gonna go to college again. So I tried to last a semester in community college that didn't work out, I ended up in the cherry field on mushrooms. And you know, with them with a mantra, you know, I just want to be good. I just want to be good. And call up a friend in Arkansas that I had met at this semester of school was like, Do you have room for me? And he's like, Yeah, and I took more mushrooms and LSD and hopped on a plane and left. Got down there with $20 and you know, I'm still my parent's insurance fortunately. So I had access to medication. But then from there, I went to like a seven year period of playing in bands traveling across the country and ingesting, you know, all kinds of substances and primarily like hallucinogenics you know, and I had a friend who once we were talking about those days that and she had worked with a lot of people who use drugs and stuff. And she said Are you still there?

Scott Benner 49:17
I am. I'm listening intently. Sorry. Sorry. Don't be sorry.

Jon 49:24
She said you're always trying to get out of your body while most people are trying to live with it or get it get into it, you know, experience life with their friends, be young. Find out who they are and what they want to do and you are always trying to eject out of this they're like it's it but but you don't want to kill yourself. I say yeah, that sounds about right in meanwhile, you know, I'm talking about playing gigs where I've got this anxiety disorder and I eaten so much LSD that I couldn't see a foot in front of my face. And but I could hear myself playing the whole show on a mountaintop somewhere or like in some old commune from some hippies that ran away from the Vietnam draft in the 1970s, right? They had land real cheap in the Ozarks so they also not they're back at your dad. He was out killing commies these people were out partying in the woods. And so I chose them. And, you know, I would just be an all the while, you know, type one diabetic, you know, stuff I,

Scott Benner 50:49
I keep thinking about how poor your control must have been. As you're talking through all this, like, are you putting much effort into the diabetes at all?

Jon 50:59
The only thing that I did was I took long acting, I woke up, I took long acting, and then when I thought I had eaten enough. I would be like, Okay, that's a meal. There's bread on this plate here is that not not weighing not measuring, not counting cars, nothing.

Scott Benner 51:20
But a doctor was still giving you insulin. But were you seeing a doctor for any kind of regular checkups?

Jon 51:27
No, just once in a great while.

Scott Benner 51:30
give any idea what you think what your a one C was? Did you ever get one?

Jon 51:34
Never. No, never. During that time? I have no idea. I can't imagine it was really good. I mean, it was.

Scott Benner 51:42
I can't imagine either.

Jon 51:45
It was it was you know, I was like drinking stouts nightly, and just as high as you can get. And not, you know, I'm laughing but really, I shouldn't be dead. Yeah, know, like, it's, it's now some of the things that some of the consequences, it's not a consequence free story, because I did have run ins with the fire department, like I fought, I fought some of the guys on the Fayetteville Fire Department. And after having a seizure and passing out, that happened a couple of times, and you know, I take them a Christmas card and apologize. But I was just running around, do stuff like that I had. And placing bets, you know, placing bets. I remember we went up to the White Mountains and we were up on the top and I was like I've got these, you know, I've got some forces that are against me and my body and I cannot get them out. Taking all these mushrooms to try to vomit it out. And try to blow my consciousness out through the ceiling to see if I can get around and try to understand what it is like I can't to create it wants me to to not be here. Let's run the bet so stripped down naked. And they have like a rock lined driveway. And you know, you're talking about hundreds of feet down and death. They have a sign up there like this number this many people die here last year, and here's the total number of deaths. And I just ran on that rock wall being like, come on. You want me to fall off and plummet? Let's do this, right. I made it down to camp, you know, showed up out of my mind. Make it in the moonlight and everyone was like, Oh, yeah. Well, I guess everyone wants to you know, like, yes, you're supposed to be here, you know, after I explained what I was doing rambled on, but I was like out doing stuff like that. Not checking blood sugar is not seen in doctors. Yeah.

Scott Benner 54:15
Was that part of it from family was that part of it, too, was not paying attention to the diabetes. Part of you saying like, go ahead, take me if you want, or was that you just not even having any context for how to take care of yourself?

Jon 54:31
Oh, yeah, you know, there's the it's both I never looked I'm sure the the tools have evolved. And they were evolving then I didn't look into it. So there was an absence of context there and I definitely didn't have the awareness I have now what it's like to keep that good foundation in your physiology, right.

Scott Benner 54:52
So what happens then when when you try time and again to get taken and it doesn't happen? What time Is this around for you? Is it going to be a woman?

Jon 55:04
Ah, no, no, no, no. I mean, because at this time, you know, I've been asked about the promiscuity thing, right, like, Did you engage in high risk, you know, sexual behavior? And I was like, No, I didn't want to connect with anybody. I, and we lived through the 1980s, you know, as well, and the HIV AIDS, you know, threat and, and I saw what that did to people. Yeah, you know, and I was just horrified. I was like, Oh, my gosh, we're also vulnerable. The people are trying to connect and express themselves. And they're meeting this no, this is just, you know, so I was pretty locked down in that regard. So of all the trails that I could have taken to, like, reach out to a woman or a partner I did. It came down to me, not wanting to hurt people. I kept disappointing people because I came home and I went to Michigan, I got off all the drugs, but stuck to the alcohol. And I found myself on the back roads at night having bets like if this curve was to take me Go ahead. Like, I can't stop this.

Scott Benner 56:21
Yeah. Suicidal the whole time. Really?

Jon 56:25
Yeah. And just blacking out, you know, time traveling.

Scott Benner 56:29
Cake. Did you dad drank?

Jon 56:31
He did not really. He did not drink. He knew that. His biological father killed himself drinking when he was 29. Which is hard to do. Like you'd have

Scott Benner 56:43
to really? Yeah, it's an effort. Yeah.

Jon 56:47
So he was like, I'm not doing that. But we had alcohol, it's, you know, and all the branches? For sure.

Scott Benner 56:57
How old are your kids? 14 and 16 1416? How do you think they're shaping up? But who do you think they're good? I mean, like, what parts? Are you that are good? Are they keeping in? What things do you think they'll fight with?

Jon 57:15
You know, they have, they're definitely their own people. They're such their own people. I'm, I'm one of those dads, that's annoying. And how I wonder at them, like, they're, they're fucking incredible. They're really, really, really incredible. They are capable of things that I've never dreamed of. And I've kind of adjusted to this place of being along for the ride, because I know if I get ahead of it, and try to direct too much of it or inform it, I'm going to mess it up for him. But I'm a happy guide along the way. But that takes practice and upkeep, and they're just, they're so impressive. You're so impressive.

Scott Benner 58:07
What you made of, I'm just gonna say you made a big leap from your father. And it sounds like he made a big one. It's crazy, isn't it, but just having a tiny bit of context about your grandfather, makes you realize how far your dad came? Like, there must have been times in his life where he was like, at least I'm here. You know what I mean? Like I'm here trying to help. Yeah, he must have felt like he had done quite a thing. Getting from where he started to where he was, and but you've eclipsed that, obviously, how much of that? Do you think? I hear people talk about this all the time, but don't get to ask many people about it. Do you think? How much of that? Do you give credit to the psychedelic stuff? Do you think the mushrooms helped you get past this stuff? Or do you think it slowed you from figuring things out?

Jon 58:54
I've got a spliced view on it. Right? There's definite insights to be gotten from that. But there's trade offs. And since then, since not since dropping it, I've gotten more insights through exercise and breathing and breathing exercises and you know, a steady Hindu standard to Hindustani classical music and watch and listen and ask questions about people's process through that. And I was pointed to an interview with Ravi Shankar who said, In reflecting on what the hippies were doing, he said, Yes, you get insights, but it's a shortcut. It's a shortcut. Okay? It's too much information. It's, you know, a lot of people I think, and this is true for myself, and I'm not branding anybody anything or putting anybody down by I think a lot of people enter the experiment. And then they're looking for a culture to provide them a map through it or the possibilities. While they're engaging in that practice, and if you look to yourself, you're going to find yourself asking for some cultural references. And I think when you look to American society, some of those maps are pretty limited and can be kind of dangerous or disappointing. Some of them can be great, too. There's great experiences to be had. But it gave me some insight for sure. But there are definite trade off.

Scott Benner 1:00:36
Okay. Yeah, so, but so you, you went home, you stopped drinking? Because you felt like you were hurting people who you're hurting your mom? Yeah. Okay. Yeah. And you go home to make it up to her.

Jon 1:00:56
It was, it was, it was just a family. It was my mom, it was my dad. It was everybody was it was it was this kind of like, You've disappointed everybody. We work so hard to keep you alive. You know, you've got this horrible disease, why do you keep scaring people? And why can't you stop? Like, that's a good question. I don't know why I can't stop. Right. So I was like, and then I had friends who were die. Okay, you know, I started hanging around, like, really dangerous people. Which sometimes music will make you do, there's like that. I guess it's always been there. It's not era specific. But, you know, I started hanging out, and I was not like, on their team, don't get the Don't get the wrong idea. But because I was musician, you know, bikers started coming around. And then it'd be like, well, we're having this gathering out the woods, why don't you come jam out there. And, you know, I saw people with like felonies like, slicing each other up and doing surgeries on foosball tables, you know, like being locked in, in a room and then have them making a vow of silence. And be like, we ever hear that you talk about this, you know, we're coming to get you, you'd like stuff like that. So, you know, there was just like, a lot of this dangerous energy that was ending up in these really, really bad consequences. And then I had friends who started to die or like, kill themselves. And I was like, I don't want to do that my family's hurting. I'm gonna go be an academic. This was like, after a tour out in New Mexico. And, you know, I had some insights there. And, and so it's like, well, college is going to fix it. But that didn't stop the drinking. So then it became really, really glaring that even if you're trying to live in a good way, or take a good line, or like, do a legitimate thing, by being an academic, you still can't stop your effed up behavior. It finds you. And so I went into a recovery program.

Scott Benner 1:03:18
Alright. And so when you go, so what's the timeframe between you fencing your dad stuff taken off and ended up in recovery? How long was that?

Jon 1:03:30
That had been nearly a decade.

Scott Benner 1:03:32
Wow. Yeah. So you came home at like, in your late 20s? Yes. Yeah. Your mom and dad's still together when you get there? Oh, yeah. Yeah. How long did recovery go? And did it work the first time or do you have to do it a number of times?

Jon 1:03:48
I never, I never. You know, I woke up hungover. And I was like, I never wanted to drink again. I used to have conversations and these would happen during like the suicide bouts to where I always like, I think my psyche is constructed like a voice chamber. Where I sound off to things and I'd asked questions, I'd be like, am I gonna make it through this? Are you gonna keep me here and be like, yes. You're not done yet. All right, wake up after odd on pills, right? Or the same thing with the drinking. Like, have you got this? Can you take this? I can't do this anymore. You're done. And I didn't drink again. And you know, the following year was cigarettes. Like I'm done with this. Yeah. You know, can you head can you take it and be like, Yeah, and I'm not calling out to any particular entity. It's just having that conversation. And yeah, I did that I went and I found community there for a while. But I also find myself attracted to really rigid personality. Is because that's what I came up with. So I learned a lot about that,

Scott Benner 1:05:04
like your father. Yeah.

Jon 1:05:08
I took on, you know, like sponsors, and people were really, really rigid. And I got a lot of help. But I also learned a lot about myself and where to let go, when to let go of the advice?

Scott Benner 1:05:25
Okay. One, you know, at what point do you think, oh, yeah, I have diabetes, I should probably check on that.

Jon 1:05:39
So it's always consequence driven. Okay, it was always consequent points driven, you know, so

I ended up out on the East Coast. Barely, I had gotten married. And that just was not going well. Two kids, and that was breaking down. separation process starts happening. And lawyers are looking to everything and the diabetes is on the forefront. Fortunately, I did not have an A one C above an eight at this time.

Scott Benner 1:06:24
Okay. So it was like a miracle.

Jon 1:06:28
It truly is. And they they had, you know, I saw I had lawyers who said, Well, you know, the average is they say that he's only at risk. If he gets above an eight. There's more nuance to that. Sure. Right. But a quick web search, we'll pull that up, you can find it. And, you know, that's when I was like, Alright, we got to keep this thing in check. But that put me on the search to try to start exploring my own physiology and the underlying mechanics and, you know, got into therapy, made a great met, met. Great therapist made an appointment, and she read out of the DSM, the diagnostic manual, the fourth edition, anxiety, definition of anxiety, and I was like, I have that. It's the first time I'm hearing that and then started reading up on that cortisol production, adrenaline dumps, all of this impacts blood sugars to all of you know, and started paying more attention. And then realizing that my emotional states are impacting my family, I need to get a hold of it. Right. But there was like an escalating decline going on. I had, you know, my eyes were still good, still passing those basic tests that you have with the doctors. But see, 2020 June of 2020. A couple of weeks out from some COVID related stuff. I was sudden wasn't my stomach wasn't empty. And like I'm throwing up in the ER, okay. And go to the My wife's phone, like, you go to that emergency room like fine. I get in there and the doctors like I think you have gastroparesis. And he prescribes Raglin it's like you need to follow up with a gastro. As specialists, yeah. And get this checked out. And we're going to notify your doctor was like, all right. And then there was a nurse there who is like in the trenches, battle scarred nurse from Boston. She's like, this is how it goes for you diabetics. That's the horrible Boston accent but I still remember how she said it. She was like, This is just This is it. Sad goes it's unfortunate but you're going to if this is, you know, like okay. And from there it was, you know, confirmed by two specialists. So your gastroparesis is seven

Scott Benner 1:09:27
Yeah. So your, your stomach is so ill equipped at this point to digest your food. Yes, you're vomiting because it's not going down? Correct. Yeah. Well, that'll definitely get you to the hospital. So did the medication help?

Jon 1:09:48
It helped in some respects that you know, I it brought up more questions so it induced motility but not much absorption So I would have food flush flush out and part of the idea, according to one practitioner that I've met with this is like, you know, a bad spark plug in your system. Sometimes if you get a new one in there and you and you and it connects, the rest will start firing up, their system will reset, you don't have to stay on reglan forever, right? So, give that a go. And she's a type one, two, she actually had like a, a transplant, okay? You know, so I leave what she said. But I kept dropping weight while I'm on the Raglin. And then about a month and a half into it, I started getting like tremors in my hand if I was taking it twice a day. So I was like, that's not good. We need to research the side effects. And she had mentioned side effects and I'm like, okay, for some people prolonged use can lead to some really bad stuff. You know it, what do we do to get the signal through. Because at that point, I had been also diagnosed with autonomic neuropathy, I had gait issues as well. Can't stand can't stand without swag and getting getting tipsy. And people just kept giving me these like Xerox of like, here's the foods that you can eat. And they would be like, black and white pictures of like, rice you know, are just like the soft foods. And I'm like, okay, and they're like, just eat less of it and do this and I'm just like, it's just a hope for the best thing like we're really driving without seatbelts now like I really I asked for it. I call it out now I got it. This really long notes. You know,

Scott Benner 1:11:51
there's given you a list of foods like let me let me try to guess. No raw foods. Nothing was skin low if you have low fat no cheese. low fiber to right. Yes. Yeah, yes. Okay. Stuff that will pass through easier. It Yes, it's your stomach. But now you're saying that that on top of the medication, the stuffs going through through so quickly? You're not getting nutrition from it either?

Jon 1:12:18
No, okay. No, not at all. And I'm slowing down and people are getting scared. My wife's like, What is wrong with you? And folks are starting to you know, you show up and they're like, II What are you losing some pounds you exercise and yourself and like, I'm not well. So I started reading up on it. And it's like, there's really not too many treatments for this generally. And I came across an article of a college athlete who had worked with a doctor at Cedars Sinai and he was a heart specialist because that's implicated in in anomic neuropathy.

Scott Benner 1:12:57
Yeah, can I go over that quickly? Or? I don't know autonomic neuropathy occurs when there is damaged the nerves that control automatic body functions can affect blood pressure, temperature control, digestion, bladder function, and eventually or even sexual function. So, yeah, that sucks.

Jon 1:13:21
Yeah, it's really, it's really, there's a lot there. There's a lot to be scared of,

Scott Benner 1:13:25
you know, you probably should have told God you meant right away when you ask them to take you.

Jon 1:13:31
You. That's how it works. Hmm. All right. Wiseacre.

Scott Benner 1:13:36
Yeah, sure. Does that I meant now, not slowly. The bags? Oh, that's crazy. So well. So that's only a couple years ago, you're saying?

Jon 1:13:49
Yeah, that was June 2020. And, and I wasn't getting a lot of answers. It was like this medication kind of hoped for the best. And the stories are that there's all these experimental treatments. They're talking about, you know, like electro stimulation of the brain stem, like being the next big medical intervention. And there's also a rise in it in the past couple of years and I'm seeing little kids, I mean, getting it early on and I'm like, Whoa, getting gastroparesis. Okay, you know, I'm just like this is a really supposed to be a long term thing and the treatments aren't there based on the people I'm talking to. So I ran across the article with the with a college athlete and she was like, I treat it with exercise and this practitioner and Cedars Sinai the heart specialist says keep doing it, and it's working. And she had according to the narrative that was published by by like a large media outlet is like seeing the something you know, She had been to Canada and done all these experimental drugs and all the stuff that was on her last leg before, he had suggested that she had gotten along relatively well and had a slow decline into it because of the exercise. So I was like, I'll take note of that, that started reading about aging as a male and nutrition requirements and all these kinds of things. And I eventually landed, to where I cooked everything in a crock pot, because it's almost like pre digesting it for you. And it's high protein bass, I discovered that a lot of the soft foods that were carb rich actually made the gastroparesis worse in the nausea worse, okay, I would have like, I started getting neuropathy in my hands and feet after eating, you know, bouts of it. And so I started doing that, and then created a schedule based on experimentation and trial and error where I start the day doing breath retentions which jumpstarts my system and gives me kind of like a reset, actually will turn my digestion on, walk, eat protein rich meals, two to three times a day, eat my weight in grams protein plus, and lifts at 10 o'clock at night. And I continue to drop weight, but have been holding out like 170 ish for maybe about five or six weeks. Visiting doctors and they're like, you you know, if you get down to 160 or below we're gonna have to talk. Agreed. But for now, I've been holding through there but do not have the gait issues I'm able to digest food and push it through my system and absorb it sometimes takes five or six hours for the stomach empty but it's working. And my one sees like a 5.2

Scott Benner 1:17:24
Well, you ever tried putting like a digestive enzyme with your meal?

Jon 1:17:28
Yes. Yes,

Scott Benner 1:17:31
that helps as well.

Jon 1:17:32
Yeah. Now I've run the controls you know with because my mom's like you she she's she's the first to the door with with you know the supplements kind of like I will try it. I believe that what's working what works best is connecting the signal from the brain to the body and engaging in problem solving activity physically, which is like weightlifting and the and the breathing. That's that's been the constant so far. If I don't do it ever run the controls. And then like, I'm not going to do and see what happens. I'm right back where I started. I don't even get in a day reprieve. Right. I will be in the yard throwing up more and start to get lose my balance. Yeah.

Scott Benner 1:18:36
Have you changed? Did you change your diet at all?

Jon 1:18:41
Yes, yeah. Yes, I had to because the carbs the carbs just made the symptoms worse. You know, I discovered that and then I was like, Alright, what's more dangerous to lose fat or to lose muscle? still lose muscle? Because then you're really bedridden. Yeah. And, you know, that is that is part of the channel that activates the channel. It's a direct signal to the brain. It's very fundamental.

Scott Benner 1:19:19
Through all this, you mentioned at the beginning of the problem that you thought your marriage was shaky, but then you mentioned her later. So has that been affected by any of this? Or have you figured something out? I remarried. Ah, picked up better person. I'm just kidding you. Okay, so the first marriage that you mentioned, did did dissolve and you're, you're someone else Now I say thank

Jon 1:19:45
goodness.

Scott Benner 1:19:45
Okay. Because you're married. Because you're married. You're dead.

Jon 1:19:50
I'm married. It was a I will just go ahead and say is difficult personality. Very difficult personality. but not for the kids.

Scott Benner 1:20:05
was the primary motivator, kids with you or with her now? Ah,

Jon 1:20:10
we had kids together. And and they ended up with me. Yeah, okay.

Scott Benner 1:20:17
Okay, so the two children, you talk about her from your first marriage? Correct gotchas. I understand. Wow, Jesus, Jonathan. That's a lot. Yeah, I Are you okay? Yeah, yeah.

Jon 1:20:30
Yeah. And it's all really, it's all really weird. You know, and I think that the one thing about it, especially think about how this relates to you and your mission. I remember the cutter episode, when you were talking about the describing all of these interviews, it reminded me of Mickey Hart's description of his drum timeline in his room. So the percussionist I, how it just became this kind of like, huge beast, right, it became an organism. Not not a beast, but an organism of its own. It's this kind of like running dialogue, and it's got all this different timelines associated with it, different cultures associated with it, including technology, including cultural orientations, personalities, all these kinds of things. And accessing that has been super helpful, because I just remember a culture of silence. And do it yourself and pick yourself up by your bootstraps, don't talk about it, try not to be weird in front of the other kids, all these other kinds of things. And I'm like, the resource that you've created, that you've co created, facilitated is just phenomenal. So like I'm doing okay, well, based on on my own metrics, right. Yeah. But But in talking about this with you, yeah, I'm doing really good. Good. Really, really good. Well, I mean,

Scott Benner 1:22:16
it's also nice to hear that you enjoy the podcast today, because I did get a review today that said that the podcast would be much better if I spoke less. So.

Jon 1:22:24
Come on.

Scott Benner 1:22:28
The first thing I saw this morning,

Jon 1:22:31
I don't say I don't I think you've got I think you're really wise individual and after, you know, after hearing, I'm a social researcher, too. I consider you a researcher. And I think like, you're used to the ebb and flow of conversation where things might go and and have great ideas about the information that needs to be put out there. And and while letting people beat them.

Scott Benner 1:23:02
I appreciate that. Thank you.

Jon 1:23:03
So I enjoy it. And I think it's a great I think about my mom, like anytime someone posts in there about a recent diagnosis, if there was even one yesterday or within the past couple days about a young person, I think nine getting gastric freezes. I really experienced the horror and yeah, just feel awful. I just feel awful. But then I'm like, you know how many awesome parents there are, who are just ready to help at the at a keystroke? And how much information in this backlog of expert advice and experience? None of that was around when I was coming up?

Scott Benner 1:23:48
Yeah, it would have been it would have maybe made a difference for you. That's for sure. Although, I mean, this whole thing got put on you pretty quickly at a young age. I mean by yourself, of course. But it sounds like but you know, it's certainly it's a two way street, your parents probably didn't know anything about it. There wasn't a lot of great direction. By the time there's any good knowledge about diabetes, the kind that was really going to stop, you know, things like this from happening in the future. Your parents were probably well out of it by then. Just it's hard to think about but you just it's bad timing. You're just diagnosed at a bad time, you know? Sure. Now, yeah. And now there's, you know, now there's just more there's more ways to talk to people. There's more people who are willing to say things out loud. And there's more people who are looking for help. So it's a kind of a golden age at the moment for for information to transfer back and forth.

Jon 1:24:50
It definitely it definitely feels that way. And it feels like that culture is even going to I still take daily injections. Um, I can't like, pumps just don't work for me, you have got like too much scar tissue and you know, like kinked, cannulas and all this kind of stuff. But you know, people have gotten so adapted to these new improved better ways for most people, that it's become a new vernacular, even going into the doctor's office. And it worries me to think about parents who parents and individuals who are diagnosed and I'd see what putting a lid on stuff has done in my own life for people around me involved in it. And for them to have a place to come to be able to hear other people tell their own story, but to just even vent get support, you know, about the end was school lunches, mental health, all these other kinds of things. What how do you put a price on that? Like, I've seen what people have done to themselves and how they've lasted without it. Snap? is typically not that good. Like, I'm grateful, man, I'm real grateful.

Scott Benner 1:26:14
No, I, I appreciate your saying. So because it's, it's very needed. And it's one of the last things you seem to be able to drag people towards, you know, it's, I think everybody feels like eight year old you. Like I can, yeah, I'll do it. I can do it. It's okay, I've got it. I somehow we get confused between being able to accomplish something, and having to ignore how it feels to accomplish it. If that makes sense or not like there, yeah, you can, you can be honest about what the process is doing to you. And still make it through the process. It's almost like people feel like if they give it a voice, that it'll run them over. And I feel like that the opposite is true.

Jon 1:27:02
That's a that's a really, really insightful.

Scott Benner 1:27:04
Yeah, I sentiment, but how do you make it? How do you make somebody believe that because once you open your mouth, it's going to happen, whatever's going to happen is going to happen. So they hold it inside thinking, I'll go with resolute resolute will work. And that, obviously, I mean, you said it so many times, right? Like the bag kept filling up, you didn't know it was filling up, he didn't know it was getting heavier, you didn't know what to do with it. And that's going to keep happening to you. To understand that you can you can take things out of the sack by just saying their name out loud, saying, you know, this is hard for me to do, and it gets a little lighter. Or I'm worried that I'm not going to be well for my whole life. And it gets a little lighter. Like saying those things don't doesn't make them come true. It's um, I know a person. If you joke about cancer, I realize cancer is nothing to joke about. But if somebody makes a flippant comment about cancer, there are people who get like, uptight like you've just wished it on somebody or that yes, it's going to happen now because you said it. You know what I mean? And I always respond to anything like that. I always say, Listen, if I was in charge of that stuff, I would immediately be joking about being taller and more handsome. Like not not, you know, I mean, I have no sway over whether or not a person gets sick, or is healthy or is happy, like What you say doesn't make things just appear. But I think people have that. I think they have that. It's not a fear. It's a it's a word that I've I'm usually not capable of coming up with. When you're scared of something happening isn't like a superstition, superstition, I can never think of that word Jonathan. And I always imagined I can't think of it because I so don't believe in it. I've never used it in context before. But people have such a superstition, that they don't want to say, I have diabetes, and I'm afraid I'm gonna get a complication. Or I'm afraid I'm gonna die alone at night or that no one's gonna want to marry me, or whatever the hell it is. They're afraid of. They don't want to say out loud, all those things weigh on them. And then it's almost becomes a self fulfilling prophecy because you can't take good care of yourself because you're so burdened. Yeah, you know what I mean? Yeah,

Jon 1:29:20
yeah. Yeah, I felt that personally. Absolutely.

Scott Benner 1:29:24
Yeah. I mean, and to look at it from the other side, if it happens to so many people that isn't that just the human trait. And if so, I don't know then is this the path like do you have to like willfully knock yourself off the path of human trait to doing what actually works? Like are we wired in a way that some that sometimes anti what we need?

Jon 1:29:54
Yes, this is Mary Shelley's predicament. Really? Guy Yeah, this is this is, you know, if are we creating a Frankenstein? You know, Frankenstein's monster are we messing with? What is nature in that context? And again, it's an outgrowth of a of a generational conversation like, yeah, you and I were never exposed to parsing those sentiments.

Scott Benner 1:30:23
No, no one would have thought about any of this. Now, the way of

Jon 1:30:27
men and women and you know, all the, like, these discrete categories are like Hemingway and sad marriages with booze, you know?

Scott Benner 1:30:39
No, it really is. I mean, it's kind of obvious, like, so if it's, if it's, if it's the Frankenstein problem, it's, it's, it's that problem psychologically, that you keep adding turmoil to your life, but just quietly in your head. And then you torture yourself with it, because you don't let it you don't let it go anywhere. You don't deal with it, or throw it away. And that and then, and then at some point, it becomes overwhelming. And you end up saying to somebody, I'm, I'm, I'm anxious, like, Well, yeah, well, no shit. You know, like, you know what I mean? Like, you've, you've stuffed these things into your head, maybe not on purpose, obviously. But you've stuffed all these problems in your head. And with the teapot analogy, you've given them nowhere to go. You're a powder keg at that point. Yeah, yeah. So there's

Jon 1:31:27
a lot of truth in that it just seems that what simplified it for me is that, you know, we're products of biology and culture and culture can get really, really weird and really strange, scary, it can produce feelings of disgust, so can biology. But at the end of the day, it's it's adaptations at adaptations are, what we're looking for. They have trade offs, and the trade offs are mental. Yeah. Now, I don't feel like I'm messing with nature anymore. And I have to keep it a secret.

Scott Benner 1:32:02
Yeah, well, you're definitely not I think it can become, I think there's this this feeling that life should be perfect. Like you don't I mean, you get the baby, and the baby looks perfect. You think, Well, if I don't make any mistakes, then this perfection will continue on down its path of perfection. But that's a fallacy. And so, you know, I think it would be more healthy, to consider that things are going to occur, that you are sometimes going to be great at dealing with, and sometimes you're going to be terrible at dealing with. And you might have to make adjustments on either side of the equation, like sometimes, maybe you have to adjust who you are to get through a thing. That is that is static, that you can't move, it's set in concrete. And then maybe sometimes, the thing can be changed a little bit to meet you where you exist, but that you have to always kind of on the fly, make that decision. Sometimes it's me that has to be flexible. Sometimes the situation has to be flexible. Sometimes other people in situations need to help me and sometimes I'm going to have to realize they're not going to help me. And I'm going to have to help them. And you can't fall into one of those things. Because those those pots are not the answer that it's all those things mixed together that allow you to kind of bob and weave through life like you just have to. I mean, there's so many simple ways that people say right, keep your head on a swivel, stay on a surfboard. I don't know, whatever the hell you want to say, right? You just need to be that little Hawaiian doll on on, you know, on the dashboard. Like you just yeah, the car rocks one way you rock the other way. That's just, that's it. And I don't know how you. I don't know how you teach that to people. I don't know why I have that. Yeah, there are times I think that a lot of these conversations are just me trying to figure out why there are some things I'm good at, and some things I'm bad at. And why do other people get some of those things and don't get the other ones? And can you just give them to people like like is this podcast? When it's all said and done and over? Is it just a frickin waste of time? Like, will it ever help people who heard it on day one? Or is it going to more help another person down the line? From the person who heard it? Do you really mean like are you fixing something in the moment? Or are you giving that slight turn to go back to earlier where you just kind of point people in the right in the right direction? Show them the horizon line even though they can't tell where the hell they're going yet? Give them enough trust to believe that if they move in that direction, they'll find the answer. I don't know. Like I have no idea all I know is I think talking about it makes sense.

Jon 1:34:46
It does. It does stories are powerful. There I know for a fact that there has been motivational moment LIS moments listening to and defining The content that I've gotten from the podcast Oh, that's what that is like the tendon in my right hand is hardening up. You know, the publisher who's had it for over 30 years. You okay? It you know, things like that are beyond helpful. And we like stories. We like stories, you know? They're just important guiding forces.

Scott Benner 1:35:28
Yeah. Yeah. Well, then I will just dedicate this episode, then to the person who sent the review that said, I talked too much.

Jon 1:35:36
I think you should talk more.

Scott Benner 1:35:39
You know, what I honestly ended up seeing after what I thought after I saw it was the podcast is for who it's for. There. You know what I mean? You can't make somebody like a style or not. And I certainly wouldn't change for you know what I mean, I know how many people listen to the podcast today. And if one person said, I wish you wouldn't talk as much, you know, like, alright, well, yeah, I can't change for the one person. I think I'd be alienating the others. And it's just, it's one of those things, like, in my mind, this is what a podcast is. It's people talking, if you know, and it's not just having someone on and saying, so you have a story, go ahead and tell it and then never adding context or, or breaking the flow of the conversation so that people can stop and think and absorb. And I don't know, I'm not worried about I thought it was I just thought it was funny. And then you brought something up that was just in direct, you know, direct opposition to it. And I thought, Oh, this is a funny timing. So

Jon 1:36:40
and yeah, it's just it doesn't I think, if, if I if I think about okay, thinking back on the episodes and thinking about the moderating the web, the Facebook site, and the evolution of things, you know, the constant updates, all these kinds of things. It takes like a really broad skill set. And, you know, yet, why wouldn't to me, the question is, why wouldn't you want someone who's had over 700 conversations?

Scott Benner 1:37:13
To tell you what they think about the thing you just said? Why wouldn't you? Would I, it's probably a new listener, and they'll either end up hating me or we're getting on board. I'll tell you, I got I got a review a few weeks ago, it's my favorite. Absolutely. My favorite review. Maybe ever, and you would think that my favorite ones are the ones who like I love Scott. But it's, it's not like that. It's um, I can't I wouldn't be able to find it. But it's oh, wait, maybe this is it. I have been waiting for my first full agency after starting to listen to the podcast to write this review. I love this podcast. While I sometimes disagree with Scott, and I do sometimes think he's a little overconfident. He has the the right to be oh, this is maybe it's nicer to me than I thought. Sorry, this isn't the one I was thinking about. There's one somewhere that says I hate that guy. I love that podcast. Like that's the context of it. I don't remember the actual words they use. But that one is my favorite. Because I think wow, like a person found me who I'm not their cup of tea. And yeah, they found the content so valuable. They overlooked that they don't like me to listen. And that makes me proud of the content. Yeah,

Jon 1:38:29
yeah. That's, that's one of the messages is always Yeah, it's coming through strong and especially if you want to get it it will. But I mean, I you know, like, I think you're in a tough position. I don't I would have no idea. I couldn't Bolus enough to deal with the pressure.

Scott Benner 1:38:52
We're I mean, we're up. We're done. Now, Jonathan, we're finishing up like how do you feel an hour and a half later? Do you feel nervous though?

Jon 1:38:59
I you know, the thing is, is like I have I've created a mental space to where I don't detect the anxiety. But I know physically, I'm experiencing it by looking at instruments that measure so just before we clicked record, I was at let me pull this up here. 90. Okay. And as soon as as we got into talking, and I Pre-Bolus, right. For the conversation, not for food for the conversation. I'm now cruising at 149 That's not bad. Now, it's not bad, but it's the adrenaline and the Yeah, hey, let's all that stuff just goes you know,

Scott Benner 1:39:50
I was recording with somebody a few weeks ago. I made these episodes from a pod five. Yeah, with a with a with a CD carry. Forget she's terrific. She's I've never done it before. And I joked, like halfway through the recording with her, and I said, How are you feeling? And she's because she was nervous when we started. She'd never done it before, which you would not know by listening to it. Yeah. And she said, Oh, I'm, like, surprisingly, not as nervous as I thought I said, I'm oddly calm. And I meant that, because we were going over a lot of information that we were we needed to cover, you know what I mean? Like, this wasn't just the, this wasn't just a rambling conversation with somebody. It was, I mean, it's right at the beginning the episodes that tells you like, I was compensated by, by Omnipod, to make them. And so you know, there was there were things that we, they wanted to cover that I wanted to cover, and I needed to get through them in a certain amount of time. And if there was ever going to be a moment where a person felt pressure, it would have been then. But I'll tell you an hour before we recorded, I picked up the list, I read through it very quickly, it was many pages of information. And then I put it down in front of me and I don't think I looked at it three times. And I don't have that kind of brain. I'm not lying, Jonathan, like I don't have that kind of brain. I didn't remember the things on that paper. I ended up looking at the, at the just sort of the titles of each of each kind of part on the paper. I know there's a simple word for that. But I'm, it's escaping me right now. But the header for each idea, I'd look down at it, and I'd start talking. And even I was like, why am I not nervous? I should be like, this is a thing. You know, if somebody's paying me, you know, and by the way, I want it to be good content for the people listening because I that so I don't do that very often at all, Jonathan, and I'm very, very transparent about it when I do. But. But I don't often, like get paid to make an episode like I make an episode. And I and I sell ads on it. So I'm getting paid to make the episode. But that's me. That's just I say whatever, I want this conversation with you and I, I don't I don't care where the hell this went. And you know, ads will go on it. And I have great advertisers who aren't going to who don't send me notes. Like, please don't put me on an episode where a guy tried to kill himself run into a rock wall. Like they don't say something. And they don't say, Yeah, I'm not gonna get a note later, where they're like, hello, devo, Capo pan, could you please not put us on the mushroom episodes? You know what I mean? Yeah, so everybody's really cool. And, but I felt, obviously I felt responsible. Like I said to them, I can make these for you. And not that you care. But this goes back two years, I've been telling Omnipod for two years, when five comes out. I'd like to make episodes to help people get started with it. Because I I think algorithms are going to be really important to people. Yeah, and they were lovely enough to go along with the idea. And, and so but but still, like there was a moment inside of us, like, why am I not nervous? I couldn't, I can't I still don't know. I'm like, I know, it sounds like a humblebrag John, but I really don't understand. And it bothers me to some degree, like, there's part of me that's like, why weren't you anxious? Like, while you were doing that, you I'd taken money from them, like I took the money before I recorded the thing. So like, at this point, now, if I messed it up, I gotta say, Hey, I'm sorry, Here, take this back. You know, I never felt like that. And I, I desperately want to understand that before I die. I want to know, not just that idea, but like, why are there things I'm good at and things I'm not good at? And why does that happen? You know, because they're the same muscles. There's other things I'm not good at that I appear to have the tools for? And so I don't know, anyway, it's a lot

Jon 1:43:45
of fight how you train man. And you've you've had you know, you've been presenting content in person and remotely like, how many talks have you given I just think that there's there's, there's certain muscles that are that are have been built over time. If they weren't there before. Maybe you've had it the whole time, that have been exercised to a dynamic and great extent. So it does not surprise me that you just read a header and then be like,

Scott Benner 1:44:20
I don't know, John, I don't know if we can trust you because it sounds like you had a lot of mushrooms about 20 years ago.

Jon 1:44:26
I've hung out with a lot of interesting people and I've seen just that that narrative play out.

Scott Benner 1:44:32
Yeah. Well, even even conversationally like now. Yeah, you say something? I don't know what you're going to say. And yes, and you've been a great guests like you've been very thoughtful and and well considered and your ideas are not like the poetry you speak in isn't, is an average. But I've understood everything that you've said. And then when No, no, no, it was it was lovely. And then when I I opened my mouth to respond. There's no moment where my I don't hear a voice in my head that says, Jonathan just said this, this and this. What do you think of it? It? Yeah. It just I don't know. Like why. And I know other people that if they were listening to you, and it was their job to respond afterwards, they'd say, I don't know what to say. Like, they wouldn't have a response. They wouldn't have a thought to build off of or, or anything. I just, it's an it's a neat skill. I just wish I had more context for it like you don't I mean, like, if you practice baseball every day for 20 years, you end up being good at it, you know, a little bit how you got there. I have no idea how I got there other than I used to talk myself out of things a lot when I was a kid. But I mean, so we seem like we've gotten past that. Anyway, Jonathan, I'm, that that review might be right, because this is the second episode I've recorded this week, that's gone almost two hours. So that's talking too much.

Jon 1:45:55
I think it's fun. I think it's fun. I liked it. I think it's, I like hearing what goes on on the other side of the mic, because I'm, you know, I'm aware, being an in in the academy, I see how dollars are acquired, personnel are signed on forms are signed, you know, all these moving parts to get one or two questions that are really focused, answered, and then build a 20 year career off of it, right. And here you are, like, you've got a match and a microphone, and, you know, all this, you're pulling experience, you're out working everybody, you know, you're out working everybody like this, people are probably going to be researching your podcasts and doing algorithmic searches of the content, you know, and writing about as many instances as this were was mentioned, or doing discourse analysis, and all this other kind of stuff. It's good to know that there's a human being behind the microphone and and that they're either gifted or they're just elite.

Scott Benner 1:47:13
First of all, I'll agree with you on one thing, I am outwork and other people. That is that I know, I think the conversations are important, I almost don't think it's important if everybody hears every one of them. Because if I have for this week, and you hear two of them, I still have the knowledge that came from the four when I have four more next week that I that I believe in, like just building up. I think people's I think people's experiences. Like I think the podcast is a repository for them, but I sort of am as well. And so. And while I don't remember everybody's story, word for word. I think that's where the answers come from. When I hear somebody say something, I I'm like, I don't know why I know this. But here's what I think about this. And I think it comes from talking to other people. And I will, I'll tell you, if I if I stepped back from this to give myself credit for anything. I am running a major business by myself. And that we had a moment this week. And it's just crazy. I just said we I am the pot. There's nobody except me. But But I had a moment this week, where I was. I was number 10 on Apple podcasts medicine chart, like I had gone past like Robert F. Kennedy, and people who, you know, are famous and have big platforms and have people working for them. And I thought, like, Wow, that's crazy. Like I did that, like completely by myself, the direction of the podcast, like I talked about with cutter is just, it's what I think it should be. Nobody gets into a meeting and tells me Don't say that or say this, or we need to say this more, because there's an algorithm that Google points to like, like, that's true. I've had SEO people tell me do these topics. It's what people Google. And I say, Well, I think they need to know this. And even if they don't know that they need to know it. I believe they do. So we're gonna put out an episode about this right now. It's just it's just a it's a free way to be able to, to work but again, without the without the advertisers. It doesn't exist. So I would have a real job somewhere and it wouldn't be nearly as cool as this one. I guarantee you. So anyway, Jonathan, I really appreciate you doing this. Can you hold on one second for me? Sure. Can

I? First off, of course, we have to thank John for coming on the show and telling that I mean, amazing story. We'd also like to thank on the pod makers of the Omni pod five and the Omni pod dash and remind you to go to Omni pod.com forward slash juicebox. The other sponsor of today's episode of course, is the Contour Next One blood glue ghost meter, all you have to do is go to contour next one.com forward slash juice box not just to get started, you can actually buy them online right on that site. It's super simple. Give it a look. If you're looking for community around type one diabetes, or type two diabetes, check out the Juicebox Podcast Facebook page. It's private and free. It's called Juicebox Podcast type one diabetes. Alright friends, I appreciate your time today. I hope you enjoyed the conversation with John. I know I did. Make sure you're subscribed or following in a podcast app that helps the show and it helps you get new content. And speaking of new content, I'll be back very soon with another episode of The Juicebox Podcast.