#761 Andy's Room

Andy's daughter uses Omnipod 5.

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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
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.


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#760 After Dark: Jon

Jon has type 1 diabetes and an incredible life story.

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

+ Click for EPISODE TRANSCRIPT


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

Scott Benner 0:00
Hello, 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.


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#759 Bold Beginnings: Guilt, Fears, Hope and Expectations

Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.

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


Test your knowledge of episode 759

1. Why is recognizing the symptoms of type 1 diabetes early important?

  • To prevent complications and manage the condition effectively
  • To avoid using insulin
  • To reduce the need for blood sugar monitoring
  • It has no impact

2. What is the role of insulin therapy in managing diabetes?

  • To reduce blood pressure
  • To manage blood sugar levels
  • To eliminate the need for exercise
  • It has no role

3. Why is carbohydrate counting important in diabetes management?

  • It helps in proper insulin dosing
  • It should be avoided
  • It has no impact
  • It is only relevant for type 2 diabetes

4. How should high blood sugar episodes be handled?

  • By adjusting insulin doses and consuming fast-acting carbs
  • By ignoring them
  • By reducing physical activities
  • By reducing insulin dosage

5. What psychological aspects of living with diabetes should be managed?

  • Emotional health and stress levels
  • Physical health only
  • Diet and nutrition
  • Blood sugar levels

6. Why is regular physical activity beneficial for diabetes management?

  • It helps in managing blood sugar levels
  • It should be avoided
  • It has no impact
  • It is only relevant for type 2 diabetes

7. Why is it important to have a personalized diabetes management plan?

  • To address each person's unique needs
  • To ensure proper carb counting
  • To avoid physical activities
  • To reduce the need for insulin

8. How can staying informed about new research and developments in diabetes care help?

  • It can improve management strategies
  • It has no impact
  • It is only relevant to healthcare providers
  • It can lead to more complications

+ Click for EPISODE TRANSCRIPT


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

Scott Benner 0:00
Hello friends, and welcome to episode 759 of the Juicebox Podcast.

Jenny Smith is back. And today we are doing another indie bold beginning series. Today's topic is interesting. There were a ton of questions that all revolved around guilt, fears, hope, and expectations. So Jenny, and I just sort of sat back and had a conversation about those ideas. We worked in the questions from you, the listeners, and we shared our own. I don't know remembrances of different things that we thought might help you get more comfortable with type one diabetes. I appreciate if you consider going to T one D exchange.org. Forward slash juicebox. And completing the survey. That's it. I won't give you a big thing you hear about it every day on the podcast he one D exchange.org. Forward slash juicebox. completing the survey will take fewer than 10 minutes. It'll help a bunch of people, including you, me and other people with type one T one D exchange.org. Forward slash juice box. And if you want to hire Jenny, she works at integrated diabetes.com. type that into your browser. Go find out about Jenny

the Omni pod five automated insulin delivery system is here. And they're the sponsor of today's episode. If you'd like to learn more, or get started with Omni pod five, go to Omni pod.com Ford slash Juicebox. Podcast is also sponsored today by Ian pen from Medtronic diabetes. The in pen is an insulin pen that has much of the functionality of insulin pumps. To learn more and get started go to in pen today.com. Jenny, we're just going to do one big thing today. And that's it. Awesome. All right. So for the bold beginnings series, which by the way, I'm starting to see feedback about online, which is very exciting.

Jennifer Smith, CDE 2:15
Yay, we're finally, hopefully it's yay, feedback.

Scott Benner 2:19
Do you think if it was bad feedback, I would have brought it up while we were recording another?

Unknown Speaker 2:23
Well, you know, you have to give honest feedback when other people would really like to hear a little more about this or didn't really agree with that, or what, uh, you know, honesty is

Scott Benner 2:33
that made me laugh. I mean, I would have that conversation. I'm gonna be honest in front of people, I would have that conversation with you privately, privately. Giving feedback, and really no one likes this, I didn't realize that people are finding it useful in the way that he intended. So that's perfect. Very excited. So today, we're going to hit this one doesn't seem like fun at all. It's a Monday morning. But this one is, is titled guilt, fears, hope and expectations. And there are a lot of

Jennifer Smith, CDE 3:07
questions are mostly like comment, oh, let's

Scott Benner 3:10
dig right in and find out I'm sure it's full with honestly. So I think, you know, I don't even want to give my opinion yet. Like, let's just talk. So the first person said that they're that they experienced immediate grief around diagnosis. Just immediately, like, like a loss had happened. I've talked about this on the podcast before, I've tried to have therapists on to talk about how you manage grief. Because I don't know from a technical standpoint, but it's so strange, isn't it? We just talked about this before we were recording it. Yeah, we did. Yeah. I guess I'll say it here while we were recording. There is a reaction that you have when you get bad health news and bad health news that isn't going to get cured. You know, it's not like, well, you have the flu, just try not to die for six days, and you'll be okay. Again. That kind of stuff. There was

Jennifer Smith, CDE 4:06
when I go back to being the tennis pro or whatever, you go, go go

Scott Benner 4:11
back to your life, this is all going to be fine. But when I was diagnosed, I remember just thinking, Oh, well, we're not going to have the life I thought we were going to have right like like and then over time that you realize that diabetes isn't as difficult as you imagined it's going to be hopefully you get some things figured out. And that it's not. It's not. I don't know, for us at least it's not like somebody chained to art into a post and we couldn't get her off again. You know, we had to just live our life here in this little space. But it still is true that we're not living the life that like when Arden came out and we were like look, we have a baby like in our symbol. You know what I mean? We're holding the baby up and on the hill. This is not my fault was gonna happen. And so you I think that's the loss. I think, I don't know what you think, though, because you were diagnosed at a different time and a different age.

Jennifer Smith, CDE 5:10
I was. And

Unknown Speaker 5:14
I don't, I

Jennifer Smith, CDE 5:15
don't know that I so much had a sense of loss as a sense of significant change. When I was diagnosed in, in the hospital, the nurse educator, was very quick to tell me, I could do mostly anything that I wanted to do. What she told me I couldn't do, she said was very limited. And boiled down to essentially being was something like a bus driver, a pilot, and I couldn't be in the military. She's like, so think of all the things that you really liked doing, and might want to do at this, you know, age that you're at, and realize that you can still do all of these things. And I was like, Well, I probably was never I was not thinking about being a pilot. I wasn't thinking about being a bus driver, or, you know, whatever. So I just felt like, okay, I guess I just have to do these additional things. So my personal sense wasn't so much of a, obviously, I didn't feel guilty. I mean, I didn't have anything to feel guilty about, I'd have to ask my mom, if she had any guilt, or my dad felt any they'd never voiced it if they if they did. But that guilt and sense of loss, I hear a lot of that in the families that I work with. And it it can stick around.

Scott Benner 6:47
Yeah. So Yeah. For me, I was a stay at home dad at that point. And they, we pretty quickly, even though we didn't understand the link between coxsackievirus and maybe being diagnosed. And even at the moment, in the beginning, I didn't understand that Arden had, you know, markers that made her more likely to get type one, two, I didn't understand any of that at that time, right. But I did see, anecdotally she was sick, she had this Coxsackie virus, and now she has diabetes. And I beat myself up pretty hard about that. Because I kept thinking, like, Did I not wash your hands? Did I not wash my hands?

Jennifer Smith, CDE 7:25
Did I expose her some way that could have been prevented? Kept thinking

Scott Benner 7:29
I took her to the wrong place. Like, like, did I get in my car one day and drive to this place for lunch instead of that place for lunch. And that's why Arden got coxsackievirus. And now we're here at the hospital in Virginia, like, you know, and as it's crazy, because it's twofold. It's not something you can control. And it's obviously not something you have vision for that you could have not done. But yet there's that part of your brain that goes if you What is it instead of zagged maybe this didn't happen. And it's hard not to feel that it's almost like you're gonna have a car accident and think if I would have just left 30 seconds sooner this wouldn't have happened. Yes. You know, absolutely.

Unknown Speaker 8:08
Yes. I've only ever had

Jennifer Smith, CDE 8:10
one car accident in my life. I was coming home from from college and the the roads were clear. Except you know what black ice is? Right? Yes. So driving home. And instead of taking the highway highway, I took a road that cut some of my time off. And it was more of like, let's call it a country road, right? I mean, it was paved. It wasn't like weird back country or anything, right. But I had this little renewal Alliance. That was my very first car. The back tires hit this patch that I thought was snow because it was like lightly covered. And I dashed like across the other side of the street and across the ditch. I hit a mailbox and I ended up in somebody's backyard. Wow. So yes, I did. And at that point, I was like, Well, how could I just like, slow down when I saw that snowy patch in the road, knowing Wisconsin weather and whatever, but you can't go back just have to be like, Okay, now I'm more aware at this point, I realized

Scott Benner 9:14
that you'll black ice out of context. When Kelly and I were very young, she would tell me all the time, be careful of black ice. And one day we were driving. And I just started to wiggle the steering wheel and I yell black ice and she and me and jokes are no wondering how we're together. How she didn't just like say like pull over and let me out now You idiot. I've done you know, it's funny. You were talking about the things that the doctor told you or the the educator told you you couldn't do and you're like, Well, no problem. I don't want to be these things. Anyway. Have you ever heard the lady that came on the show whose husband was a fighter pilot, I think and the person told her kid when the kid was diagnosed, don't worry, the only thing you can't do is fly a jet. And it's the only thing the kid wanted to do because that doesn't you know And of course, you know, I think even in that conversation, the woman's like that poor lady like she was like, so sure she was gonna reinforce to my kid that you can do anything. But there's this one simple thing you can't do,

Jennifer Smith, CDE 10:13
you can't do. And that's exactly what it was. Yeah, they wanted to know, so.

Scott Benner 10:16
So it takes me into these next couple of statements, people said, I really needed a lot of hope in the early days. And that is what people are trying to do. And they say, Don't worry, there's only three things you you know, etc, or you'll live a normal life. Just have to count your I think, I think, oddly, that so much of the poor management information that people get in the beginning stems from someone trying to be kind to them. Does that make sense? Because, like, Don't worry, your carbs and do it like they're trying to make it seem easy? Yes. Right. And maybe that's the maybe that's the only thing you can do in that spot? I don't know.

Jennifer Smith, CDE 10:58
I know, I would agree is and especially boils down to the one comment that, I think is it's hard to understand, once you get further into understanding management is the food tide one, you can just you can eat anything, just take your insulin, right. And that is, it's a way to tell somebody, not much has to change. Look, you can keep doing everything that you have been doing. You have to just add these little extras in to the picture. And there's supposed to be a sense of relief, like thank goodness, I can keep, you know, eating whatever it was for lunch that I love to eat. But it doesn't take away from the feeling of the additional things that are really big additional things that we're teaching somebody they now have to do.

Scott Benner 11:58
These next couple of statements. Kind of they kind of hinged together a little bit. This one person said they kept hoping the doctors were wrong. Like they sent them home. I hear that a lot from people. I only went through it for a day. And I know Arden had some sort of crazy honeymoon Day, which I look back now and think probably wasn't even a honeymoon. She just really just didn't need insulin. This one. Right, right. Like they were wrong. And I know they were wrong. I immediately was I called my friend who's her pediatrician. I was like, Hey, she hasn't needed insulin all day. I think they're wrong. And he was so sad. He was like, oh, Scott, like she has. She has type one. She's he's like this will change. Like, just keep watching. You know? Yeah. There's that. And there's this other part here. This person said that there was so much confusion in the doctor's office. And looking back the way she sees it is they weren't 1,000% Sure the kid had diabetes, but they were sure. And she said I just kept seeing the medical people looking at each other and nodding and kind of like talking to each other with their faces, but not saying anything out loud to me. She said she found it very scary. Like what is in that space?

Jennifer Smith, CDE 13:12
And scary in terms of? Are they confused? Are they actually the right people that I should be talking to? I mean, really, you don't want a confused? Look, or these exchanges of eye movement, facial expression between what you're thinking is an educated professional to get an opinion or a diagnosis from you just want the direct information. Tell me what you think it is. What are you going to do to prove that it is or is not this? Just be honest,

Scott Benner 13:50
it's super interesting that I'm going to tell you something personal has nothing to do with diabetes. My mom's blood pressure started to go up a few days ago. So I get a message from her. Hey, Scott, my blood pressure has been high the last couple of days. I call the nurse where she's living and talking to the nurse. And I said, Hey, my mom's blood pressure has been high for four days. Now, what are we doing? And she said, All the doctors gave her a little more medication. We're waiting to see if that worked. And I was like, Well, what else are we doing? You know, are we just gonna keep medicating or until you know, it's like, and she says, I want to get this word for word. She says, Well, your mom has a heart condition. And those don't get better. They just get worse. And all I could think was what in the hell are you thinking saying that to me? Like, like, Hey, you don't know me? Like I took it. I was like, Yeah, I know. Like, but like, that doesn't mean we're giving up on her right? Like she could see the cardiologists couldn't see. But all I could think afterwards was like, the lack of bedside manner. In that statement is fascinating. Absolutely. He was like, hey, what do you want us to do? That's right. What? Something? Could you do something? You know, it's just it was I just couldn't believe that it occurred to her to speak like that.

Jennifer Smith, CDE 15:11
Absolutely. And I think what we've lost actually, not everybody, but I think what there is a loss of in healthcare is a sense of being human. Right? It's a sense of, how would I want this presented to me? Yeah, imagine you're the person sitting there. And I think doctors, you know, and or other clinicians, not just doctors in general, but other clinicians have become so very just blunt, for lack of a better word about this, is it? And no, it's not going to get better. Well, you may want that information eventually. And you may actually sort of know that, you may understand that as an adult, especially, but to have somebody so very cut and dry be like, Nope, this is it. This is, this isn't going to get any better. And we've put a little bit of empathy in that rather than just being so

Scott Benner 16:15
yeah, Jenny, I don't want her to lie to me. But oh, there had to have been a few better ways to say,

Jennifer Smith, CDE 16:23
I mean, even to be able to say, well, we're going to use these types of medications. And as you understand the medications, we may need to titrate we may need to change them. As things change with this type of a health condition. We do know that it doesn't typically heal. And so we're going to have to try things to keep your mom comfortable to keep her feeling well enough, but it will progress. Yeah, I mean, I think that was much nicer.

Scott Benner 16:52
No kidding. I fascinate anyway, so there's a balance between being told the truth and being slapped in the face with some horror, there's better ways to talk about and I don't, there's one,

Jennifer Smith, CDE 17:06
I think, as you say, slapped in the face, kind of with a diagnosis, oftentimes, in a very immersive, you know, emergency type of diagnosis for type one. Many times it's not that somebody's caught symptoms early enough and just come in to the pedes office or to their typical primary care doctor and said, Yeah, I'm not feeling so great. Could we, you do some tests and have some discussion and whatever many times it's very emergent. And then like mine, I went to the emergency room, and I was right there when the doctor told my mom and myself what was wrong? Yeah, there was no like, time in a nice room someplace with like birds outside the

Scott Benner 17:50
human. That's all like, just yeah, that's all I'm looking for from anybody. I'm going to read this person statements pretty big.

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I felt an incredible grief, we had no family history of diabetes, it was a surprise. And I was extremely scared on the way from the urgent care to the hospital, following an ambulance that my daughter was in. Or excuse me, followed by her ambulance ride. My daughter asked what diabetes was. And she said I was like, it's sort of like being allergic to sugar and you need shots. I didn't know a lot. She said she said I wept all night. When she wasn't looking, I thought I can't do this, I really just can't do this. She said I wanted to I wanted someone to come and give me a hug to validate my feelings and my fears, but also that told me that this was going to be okay, that she could live a great life. And that I would be able to do it. A lot of parents have learned to manage well. And you can too, she said that I would have been would have been great if somebody could have said that to me. She can still do everything you hope, etc, and so on, I would have liked someone to tell me that the next few days were going to be hard. And that it would involve sleep deprivation, it would have felt good to know that I could have done it one step at a time, maybe one day at a time that I could have found a Facebook group that I could have shared my struggles with somebody else that somebody else might have known the difference. Sure, yeah.

Jennifer Smith, CDE 23:12
And I think some of that also ties into the rapid nature of discharge upon a diagnosis like this. I mean, in today's world, unless, unless there's something really detrimental within that diagnosis. And they really have to keep you for many, many, many days. Most often. It's an in you might be there one two nights, and you are out and you get rapid fire information. First you get a diagnosis that you had no idea even what it was many times, and now you're getting education, if you will, and you're getting information about all of these things that you're going to have to do again, the factors of life changing, become like a quick like knock on the head. Yeah, here you go. All these things. You know, when I I think that when I was diagnosed, I was in the hospital for an entire week. And day after day, there were new things brought in different pieces of education in a nature that I could swallow and my parents could swallow. Because it wasn't all rapid fire.

Scott Benner 24:24
Yeah. I have a note from a person that just I just randomly got this note a couple days ago and just says Hey, Scott, thanks for everything. You've helped me more in two days than anyone else helped me in the last 20 years. And what I responded back to her was I was like, well, that's really wonderful. Thank you. I appreciate that. I'm glad that the podcast is helping you. But I didn't have to tell you those things while you were sitting in the hospital. And it still felt like somebody hit you in the head with a frying pan. Yeah, I got to tell you when you were relaxed and at home and and I think in

Jennifer Smith, CDE 24:55
a different way though, like there's a slap in the face with something that You never expected again, a type one diagnosis or a type two diagnosis or you know, whatever. But then there's a slap in the face kind of with, well Darn, this information spin around. Why didn't I have access to it? Why did nobody told me about this? Nobody told me I could do this way, or use this product or whatever. So I think they're, they're similar but different enough that you've been already navigating through something. And now you're a little bit more irritated.

Unknown Speaker 25:32
What? Why didn't nobody tell me that?

Scott Benner 25:34
Hers has another layer. And that definitely is that, you know, if she would have found the podcast, you know, six weeks after she was diagnosed, she'd be like, Alright, cool. Six weeks, I didn't understand what I was in 20 years is hard. Because you start doing that reverse math, you're like, I've done damage to my body now that I can't get out of, and you're telling me this all existed? And just no one told me about it? Right. So it's a strange balance. How do I explain type one diabetes to a three year old? And I mean, I don't know. I don't think you can. What

Jennifer Smith, CDE 26:07
did you do with I mean, Arden was to right? Yeah, she was how did you guys talk to her about it?

Scott Benner 26:13
You look her in the face. And you say, I'm sorry, I have to give you this needle. And you try not to cry? Like, I mean, what else are you gonna do? Right? Like, it's, she's two or three years old in this in this person's situation? What are you going to say? Like, correct me? What are they going to understand?

Jennifer Smith, CDE 26:33
Hi. And that's where you have to look at is the understand level. Yeah.

Scott Benner 26:37
I mean, eventually, we told her, there's a thing inside of her body that makes the stuff inside of this needle. It's not making it anymore, and she needs it. And so we're gonna give it to her this way. And she then saw the needle, put a big smile on her face and ran away from us, just like, took off. She just told me. Two nights ago, we were sitting around online, googling what are people's biggest fears. And guessing people's top fears, like by state by country was actually kind of interesting. Yeah. And she said, Oh, this is one of mine. And so we're all like, trying to guess what it is. And she's like needles, she's like, I'm afraid of needles. She's like, I really don't like needles. And I'm gonna try to get on the podcast and to talk about it. But Arden's only ever given herself one shot. One. And it was you did

Jennifer Smith, CDE 27:30
it for such a long time,

Scott Benner 27:31
I switched to a pom pom, and we switched to a pump when she was four. And she gave herself one recently, because she's going to school and I was like, listen, you're going to hit a spot at some point, while you're at school where you're gonna have to clear something, you're gonna need an injection here, do this one. And I'll let her tell the story. But she, I think she took the better part of 90 minutes to put the to put the needle on her thigh. But she had to go into a private room by herself and like psych yourself up to do it. But if you take her she'd gets blood draws constantly sure hates them, but has to watch it happen.

Jennifer Smith, CDE 28:06
And somebody else is doing it though. Yes.

Scott Benner 28:09
But she stares at it. She oh my god and look away she goes, I need to see it happen. I'm like, All right. I don't even know how to explain that. That thing, right? So it's not just as simple as nobody wants to get stuck with a needle, because nobody wants to get stuck with a needle. But she really, she hates it. You know, but how do you explain to a three year old? I don't know. Like, I think the best thing I can say is that after a while, it just becomes commonplace. And a three year old doesn't remember, five months ago, the first day you were like your Give me your arm, you know? Right?

Jennifer Smith, CDE 28:46
Well, and as you teach kids, anything, I think, I think parents who are very verbal and explanation about we're going to do this, because of this, like, I'm gonna go outside and I'm gonna mow the lawn, because the lawn is long, and it needs to be caught. And, you know, we don't want

Unknown Speaker 29:07
bugs growing in our backyard, or whatever it is, I mean, at a level that a

Jennifer Smith, CDE 29:12
kid can understand. And then you continue to progress through. As kids grow, you keep explaining more and more. And oftentimes, they end up coming back to you with the endless flood of questions that over the age of like, four comes into the picture, right? And as they ask more, you get a little bit deeper in, I guess, explanation. You have to start at a really like, dumbed down level. Yeah.

Scott Benner 29:36
And you build on it. You really do because I mean, even even saying, There's something inside of your body that makes this stuff but it's not working anymore. I don't even know if there's context for that. Really. There's stuff inside my body. You don't I mean, like what like this is because for a young person, you're you you're this the village that you see out front you're not your intestines and You know,

Jennifer Smith, CDE 30:00
if the child is interested in books already, and you read often, there are a lot of really good kid based books that are all different levels of knowledge to be able to start with an explanation. And I guess I would probably start there. Yeah.

Scott Benner 30:18
And I think understanding that it's not like you're, you're not talking to a friend, you're not going to explain to them right now. And they're just gonna get it. It's going to be like a process. And, you know, you have to be patient with it. This person said, will my child live a normal life? I know the answer to that now, but I absolutely did not know then. So we covered that. This person said what you said earlier that the simplest advice is still incredibly difficult to comprehend in the early days. It would have been great if somebody would have explained a honeymoon to me. You know that there's one. How about this one? Will I ever sleep again, they just talked about checking every two hours with no end date, and did not discuss CGM with me at the time.

Jennifer Smith, CDE 31:04
That's where with today's technology a you as the parent or caregiver, you go back and you say, You do realize that not only have you loaded me with this thing, not you, you know, by decision, but you've given me this thing to now help me manage for my child, you're telling me you have to do this, I know that this technology is available, you will risk you will write a prescription for this, right? I mean, you will give this to me, there is no reason not to. If I have the ability to sleep, I can make better decisions with all the things you told me to keep track of in the day for my child,

Scott Benner 31:40
but you were thinking about what she said like you're gonna check every two hours. There we go overnight, though. Yeah. Well, what? You know, right. And then there's some doctors who used to say, Don't worry, like, it's very important to check during the day, but overnight, don't worry about it, as well. Because that's what I was told. I was like, how the hell is that reasonable? Like, they told you to not check overnight? Overnight was fine. But during the day, you need to check. And I was like, yeah, and then I stopped. And I didn't do that. And that's how I Well, first I listened to them. And then eventually, I was like, wait a minute, that doesn't make sense. And then, you know, that's how I learned that I was putting Arden to bed at like 180 blood sugar. She was waking up at 90, and I thought I was doing great. I checked overnight and saw she was like 58 At some points.

Jennifer Smith, CDE 32:27
Right? I mean, that's very similar to being like, your newborn baby needs to nurse every two to three hours or get a bottle every two to three hours. But at night, go ahead and sleep about it. They'll be fine until you wake up at nine o'clock the next morning.

Scott Benner 32:44
Exactly right. And it freaked me out. I when I figured it out. It would have been nice. This person says if a medical person would have just talked to me like a human being. And this next person says the favorite thing that an endocrinologist told me early on you see this, people say this all the time online. But there's two things you can no longer eat poison and poisoned cupcakes is what they think. Yeah. It made us realize we could do what we needed to do and succeed. The mental load of it all. For me. My My son was for a diagnosis. And I was able to work from home with him until we became more stable with our sugars. And that helped her with her the mental strain just taking another thing away in life and being able to focus more on that we got super lucky. I was a stay at home dad already

Jennifer Smith, CDE 33:33
already. Yeah. When I think about especially in this I have a number of single parents, you know, single really single like there is no other person father or mother caregiver involved. And or just the sharing families, right? Sometimes you're with mom, sometimes your dad, sometimes you're the grandma and grandpa or whatever it might be. And in a diagnosis setting where there really is only one caregiver. Now you have added when you talk about things changing, you've added another layer of change that they may already be pretty overwhelmed.

Scott Benner 34:13
Yeah. Yeah, no, no, it's not everybody is in my situation where I was like, Oh, well, I don't have a job. I have plenty of time to figure this out. Right. You know, I tell people all the time. They're they, they thank me for the podcast. I was like, thank my wife, like she made enough money when we were younger that I didn't have to work and that's part of my free time. It was around figuring out diabetes. I wouldn't call it free time like you think of but you know,

Jennifer Smith, CDE 34:37
right. Like you're baking cupcakes for the neighborhood.

Scott Benner 34:42
Oh, you know what I'll do with my free time. But I mean, I wasn't at work, where I had to disconnect myself for my family's problems so I could get a thing done so I can collect a paycheck. You know. This person said I needed somebody to tell me it wasn't my fault repeatedly. In the beginning I'm here, this is interesting. We just talked about needle fear. And so I kind of want to come back around to this for a second. This person saying needle fear was really tough for my kid. They figured it out. It's no big deal now, etc. There's this thing that I did that I believe is worked for us. And I think it's worth people paying attention to because in the beginning, you can do this thing. Where you're like, well, we'll use the numbing cream. We'll get a buzzy, we're gonna do this. We'll do that. We're gonna make it easier. Oh, it's time for your shot. Not yet. Okay, buddy. Let's wait like I am more of the School of like, draw the insulin, stick it in push the thing over with like, we're not going to like this one way or the other? Yeah, let me draw it out. Let's not draw it out. I just I learned that lesson very early on when I think my wife and I spent an hour and a half in the middle of the night trying to get my son to swallow a pill. You just like swallow the pill? Just take the please take the pill. I don't want to hold on. Wait a minute, wait a minute, wait a minute, you know, like it's the it was that I'm just aren't used to wait a minute. I was like, God, let's just do it fast and get it over with. Yep. And just get it done. I mean, you'll find what works for you. But I think dragging it out, just extends the panic because it goes away when it's over. It does. Yeah,

Jennifer Smith, CDE 36:22
really. It's even like an argument. You know, with a five year old, essentially, you're having an argument. And you can tell that you're continuing to get more irritated, because they're just not listening to you. It's better as the adult to literally just be like, I'm stepping away. I've told you what needs to be told to you. We're not doing it for this reason. And I'm gonna go over here. And you can just sit because there's, you know, so just deal with it. Now, get it over with and move on. You also have a lot more time in your day.

Scott Benner 36:54
This one person says I was 39 when I was diagnosed, and I kept thinking, What do I do wrong? And she said, or he said, Excuse me one or the other. I still, they said that their mental health is still not where it was before they were diagnosed. And they, they just don't know what to do about it. And speaking of not knowing what to do about it, this next person says, How do you deal with overwhelming emotions? I've never had them before. And now here they are, I don't know what to do. And I don't know where to get help and do the whole thing.

Jennifer Smith, CDE 37:28
Yeah. I mean, the the mental health piece of diabetes management, both for caregivers, as well as the person living with diabetes, thankfully, has gotten more attention, if you will, in the past couple of years. But I think it's still well at the bottom of pile in terms of discussion and asking, how are you doing with all of this? You know, what kinds of things are you doing? To to have joy and to still feel good and to do as much as you can back to the normal, whatever normal is, right? I mean, there are, there are quite a number of mindfulness and meditative types of things that you can kind of do to get back to letting your brain at least work through things in a way that doesn't make you continue to feel stressed all the time. But you have to look for the resources, right? Nobody hands something to you like that at diagnosis.

Scott Benner 38:34
Well, there's a question I asked a lot when I'm interviewing people, and they have really heavy stories, you know, people are like, five, six metal conditions, like a lot of stuff going on, whatever. And they get done. And I try to remember to say to them, Hey, are you okay? You know, like, because I also try to make my interviews fun, and like you're talking about these really serious things and to keep it light hearted. And then I'm like, are you alright? I'm frequently surprised by the number of people who don't know if they're okay or not, or not. They can't say they it's not that they don't want to tell you. They're not okay. It's that they don't even consider if they're okay. Like it's not a concern of theirs. They can I guess they compartmentalize everything to the degree where they don't ever consider Yeah, at all. Yeah, you know, I've had people I'm like, Just take your time. Think about it. Are you alright? They can't say, you know, and that's, that, to me seems like emotion. They're not okay. Yeah. And they're not dealt with emotions. They don't even know how to like, put words to them, you know, right. Right.

Jennifer Smith, CDE 39:41
And I think some of that might come from trying to bring down emotion around diabetes management make right to be able to just see the numbers as numbers and information and be able to navigate through them and move on right. But a lot of that is taking A piece out, that is part of being a human. And, yeah, it's okay. It can go too far in terms of I don't really even know how to analyze whether I feel good or not.

Scott Benner 40:12
Or I don't think I should think about this because I don't, I might fall apart if I think about it. Right. And so everybody's just trying to be I think you're right. Like, there's whatever your situation is. And I'm certainly not, I mean, some people situations are much more manageable than others. But that is your situation. It's not, it's not changing. So you have to accept it, and then put your head down and keep going. And I guess maybe for some people putting their head down and keep going is I can't think about this. Because, hey, because it's yeah, I'm 39 years old, and my pancreas stopped working. Are you okay? I think the answer is no, I'm not okay. This is terrible. You know, like, and there's no, the doctor said they can't fix it. And it's not going to go away. So how am I supposed to be okay. And the answer is, I think you have to change your perspective about what Okay, is. That makes sense? Yeah. I mean, because in the beginning of life, everything just feels free. You know, they mean, like, I'm going to do this and it's going to be fine. And if it doesn't, I'll go do something else. It doesn't matter to me, it doesn't really hit you the first time till school when you're if if the idea of getting good grades is important to you, because then suddenly you're like, Oh, I'm being measured. Right? Yeah. And then you become an adult, and you get measured again, because you want to stay safe and secure and fed. So you got to find a job. And then oh, everything's not so easy. But then you fall into that you're like, hey, all right. I'm an adult, I'm doing it. I got a place to live. Television works. You know what I mean? Like, my vitamins, I'm good. Here's the next problem. And it's medical. And then No, no, it's not okay. I didn't want this to happen to me. I mean, it's

Jennifer Smith, CDE 41:56
well, and medical, I think is really, it's one that may or may not have a quick solution to it, or a fix to it at all. It's something that you learn to navigate with. But it's not like, I'm not okay, because my tire went flat on my car. Okay, well, this is a situational not okay. This isn't a long term. I need to learn how to accept and move forward and realize that this will be here. I know that some days are going to be great. Like I want them and other days are going to be karate. Yeah. And, yeah,

Scott Benner 42:38
I think it's important to know that you are going to go through a lot of the stages of grief, which you know, you can look up online, there's different doctors who think of them differently, but you know, shock disbelief, denial, bargaining, guilt, anger, depression, acceptance, hope, like that stuff is, it's all going to hit you. And it should This one's interesting. Do you know why they call it diabetes? Do you have any idea I'm asking you if you know, like, where they

Jennifer Smith, CDE 43:01
come from the light, I mean, diabetes in and of itself. There are several, obviously, kinds of diabetes in terms of the end like the diabetes we have is diabetes mellitus or mellitus or, you know, whatever how you say that, that last term. In terms of just diabetes. It there are Latin terms, essentially, that go along with it, which is the reason

Scott Benner 43:26
this person statement makes me think that it's, we should call it live a VDS. Because she said her six year old said, why is it that I have babies, that's how the kid heard it. So she thought I'm gonna die, because I got diabetes. She's, she's six. And you know,

Jennifer Smith, CDE 43:46
it is kind of cruddy me. And actually, it's something my husband said to me a long time ago. And we're like doing the diabetes anniversary of their diversity or whatever he's like, why are we not calling this livability? Like, you don't die right away, like, in fact, you, you move forward? Along with it. You're living so what's the, you know, worse than I'm like, Well, here's the Latin meters. Yes, exactly. So

Scott Benner 44:12
it's, I guess, Isabel did a very good job grouping these questions together for me, because I just keep thinking, Wow, it's amazing. They all just relate to each other as I go down the list, but now I realize she did this for me. So that was nice, because this next one is not pleasant. But this list this person said, my baby was diagnosed, and everything felt like that to me. She's like, well, is sugar gonna kill her? Am I gonna kill her with insulin? Is this pump gonna kill her? Will this CGM kill her? She said death just rang through her head in the beginning. Yes, it's a it's a it's there's probably a good spot here for us to point out that Jenny's living very well. diabetes and so are a lot of other people.

Jennifer Smith, CDE 44:54
Many, many other people absolutely are.

Unknown Speaker 44:57
Yes,

Scott Benner 44:58
but I we're doing Next as part of this series, because these are very likely the things that are going to run through your head when this all happens, and I think that should you not go find a therapist, or should you not go find an online group, that it would be very helpful to know that there was another person who thought, I'm gonna kill everybody. I thought I was gonna call Arden constantly. In the beginning, everything I did, I was like, this is definitely gonna kill her. Like, just, you know,

Unknown Speaker 45:27
I'm gonna give this to her. And I don't know that it's right, and I'm gonna snack and well,

Scott Benner 45:33
lunch wasn't lunch anymore. Lunch was just like, I wonder if I didn't screw this up is how it felt. You know? And then, you know, a couple of hours later, she was still looking at me. I was like, hey,

Unknown Speaker 45:43
yay, was when I didn't. Yeah, it isn't. You know,

Jennifer Smith, CDE 45:48
I haven't thought about it in quite a while though. The question about the word. diabetes, I really haven't. I mean, the the first part of it has nothing to do with death at all Daya. diabetes really just means a passing through or a siphoning right. And mellitus or mellitus means sweet. So it's they tested eons ago, when we had nothing. Doctors would literally dip their fingers in like a person's urine and taste it. And if it was sweet, they knew that they had this like sugar sweats, sugar sickness, or honey sickness.

Scott Benner 46:24
You also knew your doctor really cared about you. Because taste in

Jennifer Smith, CDE 46:28
my urine. Urine is pretty sterile. So unless there's like Aki, you know, whatever,

Scott Benner 46:33
how about I don't care, Jimmy, I would not have been a good doctor. In that moment, I would have been like, listen, we could taste this to see if you have diabetes, but I gotta be honest, I'm not doing it. Go find a friend.

Unknown Speaker 46:45
There's lots of stuff that could be in. Good Doctor was like, let's taste this and see what's going on. He signed up for

Scott Benner 46:52
that. This person said to be very careful that they stopped taking care of themselves when they were diagnosed. She said I could start, I got to the point where I could count the times I was showering because I I was just not taking care of myself anymore. She's like, I was fighting with my insurance company, calling companies begging nurses to call me back. She said I was distraught and overwhelmed. And that's where the that's how the grief hit her. She kind of just started to let go of like everyday activities that you would do.

Jennifer Smith, CDE 47:25
Right better now. And I think it brings it in, I mean, that that brings in a layer in terms of what she mentioned, things like calling insurance and fighting for things, right? It brings in a piece to that management, that is the addition of more, right more things to keep track of and do. It's not well, my you know, medication that I take for whatever it is, I pick it up once a month, and it's okay. And I don't really have to think about it. And I want to fight the insurance to cover it and whatever. But all these parts that ended up coming along with diabetes management in today's world, especially mean, you may have to have more interaction, at times, not necessarily every day, but more interaction at times, and especially in the very beginning. When you are asking your insurance to now Hey, cover this and cover this. And we've got this new diagnosis, and they've got all of these protocols and things that they have to follow within their organization. There's a lot of work upfront,

Scott Benner 48:32
ya know, I've yelled the F word into a phone a lot of times the beginning Oh, yeah. I don't know that I've ever used no word. But I've heard Yeah, I used to find that it moves things along very nicely.

Unknown Speaker 48:46
I probably said them after I was off the

Scott Benner 48:49

  1. i I'm assuming that this customer service rep would say that they don't feel like they're in a safe space. Now I'd hang up the phone. But back then I was like, Hey, you don't know how hard this is? Let's go. You know, it's just interesting. Consequences are real. But I couldn't let that stop me from living my life, the balance. I think that not being a person with diabetes, I can't be sure. But I think that's got to be a bargain that everyone with diabetes makes every day of their life. Like Absolutely. Right.

Jennifer Smith, CDE 49:24
Absolutely. With with everything. I mean, the consequences. And they're not necessarily saying the consequences are real in terms of, let's say bad versus good. I don't love those words. But there can always be a good consequence to your choice. There could also be what you really didn't plan on happening, because it just worked out the other way. Right. So

Scott Benner 49:47
this person says, the fear of complications for my daughter was my biggest worry. And that's all I saw when I look things up online. I have to tell you, my brain works that way too. Like, you know, you have an autoimmune disease, there's a likelihood you might have another one at some point. At what point your brain

Jennifer Smith, CDE 50:08
goes to the world what else could be wrong? Yeah, the worst What else could happen because of this? Yeah.

Scott Benner 50:14
Which by the way, you have to guard against, because you, you have to make sure to look at all your possibilities as things are happening over your lifetime, but do not just see diabetes all the time, too. I see people that happens them all the time, like, hey, my kids got a headache. What's this got to do with diabetes? I was like, I mean, maybe, yeah, maybe the kids just got a headache. But listen, I don't know is your blood sugar bouncing around all over the place? They've been low for a while high for a while. If those things decide people get headaches, still people with diabetes, get headaches and have nothing to do with their headaches. And it's hard sometimes to separate them. You know,

Jennifer Smith, CDE 50:50
and then in kids in terms of headaches, I think a big one is hydration. A lot of the time, quite honestly. And yes, you might see some blood sugars that look funny to hydration being a big piece of overall management. But headaches just alone. Oftentimes, it's drink some water,

Scott Benner 51:07
I want to I want to offer some comfort to the person who wrote this, because they said that they remember thinking that their son would grow up to hate them. Because she saw what she was doing taking care of him as hurting him. I don't think that's how it gets remembered. You don't know? Yeah. I mean, I guess it could, but

Jennifer Smith, CDE 51:31
it could I think in again, that's where some of the discussion goes along with what you're doing, using less of your own, like inner thought as you work through doing an injection or changing a pump site or putting, you know, a new sensor on or all those kinds of things that parents are doing. If you talk through it, like and verbalize it rather than just think it through. Kids absorb. And they start to make connections. And with that, I would expect that the child who's hearing their parents say, we have to do this, and I'm going to do this, and this is why I'm doing it this way. They see it more from a standpoint of caring, rather than the parent. Like being me and yeah,

Scott Benner 52:17
no, I think that hopefully, over time, it shakes out that way. Yeah. This next one, I learned the most important thing I learned from the podcast is that non diabetic blood sugars are actually possible. And no one told me that at first and I did not believe it until I found the podcast. So I'm very glad that that happened for them. I guess they made it on to the Pro Tip series. But that's that's lovely that that for somebody because I do think that when expectations start getting set up and they start telling you like a seven a one C is fine. Don't worry about it, you might start thinking like, oh, I guess I guess what I used to have with my pancreas isn't gonna happen anymore. But it can. Just a quick one lady said, I was told that in the beginning, it will be hard. And I thought in my mind, that's probably means like, two, three weeks. And not a couple of years or do this for three weeks. I got that. It'll be okay. If it's only going to be three weeks. That'll be okay. Yeah, so there's one on here. There's not there's one that's not on here. And I know we're kind of getting up on your time. Am I right? We're okay. Because I'm gonna tell you right now, this list goes on. And on and on and on. Like, I think we've hit the big, the big, you know, ideas, ones, but here's one that just isn't here. And this is all this is perspective from me, because I'm not a I'm not a religious person. But I see people talking online all the time. Why did God do this to us? I see a lot, or this is going to be okay. Because God wouldn't give me something I can't handle. And so I don't have a lot of religious perspective. And I and I understand that. That's how some people might see these things, which is, you know, I have no qualms with, but what I can see from an outsider's perspective is that sometimes sometimes I've seen people not pay as close attention to their health, because they think God's got it. If that's the way to put it, I don't know exactly. And if you believe in God, and you think he's on your side, or she's on your side, or whatever you think I'm down with that. But just remember God is not going to Bolus when your kid is 330 You know, you need to take care of these things. There was just another story recently, I think it was from Australia where these people were put in jail because they let their kids die. Yeah, because they said that God was going to take care of him. And yeah, you know, I just, it's not a commentary about religion to me, it's just you have to realize you're in a, you know, a unique situation that is not going to be in any way taken care of without you facilitating it.

Jennifer Smith, CDE 55:20
Correct. And I think the bigger thing in, in whatever type of faith that you may have. Most, most religions, most faiths have an underlying to God or logos or whatever you believe in kind of out there. It gives us movement forward and information. And the better we utilize that information for the, for the greater good, or for our own health or whatever, we have to know that that knowledge, you know, is coming from somewhere, right. And so I don't think if there is a God, there would be, and I believe in God. But I don't I don't think that God dictates this person gets cancer, this person gets diabetes, this person gets heart disease, that that type of being if there is, isn't so cute into person to person on a grander scale, we've been given free choice, right? We've been given the ability to use our brain to use what we know how to do, or I don't believe that there would be doctors and engineers and plumbers, and, you know, people who are truck drivers or bus drivers or whatever, you know, we've decided along a path. And we are using our brains to make decisions. And one of those things comes in to health management. If you if you have a child or someone you love, you have to do what is been put out there already. To be two years. Right. I mean, that's that's what I believe. I think I in particular, from my faith base, I truly believe there was a reason that I have type one. I believe it's because I had a, I guess, a destiny, if you will, to be able to use what I've been given to help other people. That's what I believe. And I don't know. So I hope I'm Hope I'm achieving that.

Scott Benner 57:47
I appreciate your perspective very much, because I honestly don't have one. First of all, I just know that, from my, from my perspective, looking on to other people's lives. There are times that I want to respond and say, Please stop hoping and Bolus, right. Yeah, like, right, please. I hope. Can you pray for my son, not none of us need to pray right now push the button on the thing, make the blood sugar go down, like like, you know, like that, that kind of thing? Right? I just think sometimes that that can get in the way of you making a good decision. And so I'm going to there's a story, I'm going to get it wrong to some degree. I think it's it's something that's been repeated over and over again for years. But guys walking down the street falls in a hole. A doctor passes by the guy shouts up, hey, can I can I get some help here? The doctor writes prescription throws down in the hole. And the guy's like, well, what am I gonna do with this? And then, you know, a priest comes along, and he says, Hey, can I get some help? And the priest writes out a prayer and throws down the hole. And the guy's like, actually can't get out of this hole and a friend of his walks by, and he says, Hey, man, can I get some help? I'm stuck down in this hole. And the friend jumps in with him. And the guy goes, What are you doing? Like now? We're both stuck down here. And he goes, No, no, I've been down here before. And I know the way out. Let me help you. Right. Yeah. So you, you have to accept that help. Right, right. You can't just you can't then you can't just step back and keep saying like, what's the other story right guys lives on a floodplain. And somebody comes by and the news cameras come by and they say, Hey, aren't you gonna leave? Man, there's a flood, you gotta go. And the guy's like, no, he's like, you know, gotta get me. And the guys like, I really think you should go there saying you should leave here. And then a little while later, a guy comes by on a boat and says, Hey, man, get in. There's a flood common. Let me get you out of here. And a guy goes, no, no, no, no, you know, like, God's got right. And then eventually the guy's house gets knocked over. He's dead. He looks at God. When he opens his eyes. He goes, what happened, guys, like, like I said, the reporter with a whole bunch of hell, I sent the guy with the boat, you know, I mean, it's an old story, obviously. But you really have to. These are just parables because this is how people's minds work. Correct? Right. So take the help that's offered to you and wouldn't help go to somebody who knows what they're doing. Yeah, excuse me find people who have been through this before. Err how you feel, don't hold your emotions in. Understand you didn't do this guilt is I understand it. But I mean, try to have some long perspective, I find that what helps my guilt more than anything is sometimes when I'm talking to a person who's got autoimmune down their family line forever. The other day, this woman said to me, Oh, my grandmother has she's achy all the time. I don't know if she has Ra. She's like, I'm not sure. But her grandmother was in her 90s. And I thought, okay, that sucks. But she still lived her whole life. You know what I mean? Like she like a long, long life. I think sometimes just seeing that other people do, it takes away a lot of the other stuff. And I also think, Jenny, that understand understanding, I don't think anybody gets out of this thing unscathed. Like, you know, I'm a little, maybe we all are a little jaded, because we know so many people with autoimmune diseases that it feels like everyone has an autoimmune disease some days, right. And I'm sure there are some people walking around who are just free and clear. Nothing's ever happened to them. But I think for the most part, that's not most people. So I don't

Jennifer Smith, CDE 1:01:19
think so either. I think most people have something that is not visible to others, similar enough to diabetes. And the only outward visual in terms of diabetes truly are the devices right? Now, the pumps and the CGM that are very visible to but even that doesn't disclose internally what the person has to go through and manage and take consideration of all day long. So yes, and I loved your little boat, and, you know, the news reporter and being like, hello, hello, something's come in, right? Because that is it. Oftentimes, we, if you really are hoping too much hope is a grand thing. It's wonderful. I, you know, we all have to hope for things. But along the way, we have to take action, in order to get to that point of what we hoped for. You can't just sit back in the launch your chair and be like, well, if it comes to me great, and I really hope that it does. That's

Scott Benner 1:02:31
not really gonna work towards it also work. If you've heard people on this podcast before we have multiple issues. And I'll say to them, If I gave you a magic wand and could make one of these go away, which one would it be? They almost never say diabetes. It's fascinating. Like, I always think like, Hola, definitely gonna say diabetes, and always like, Oh, no, I would rather not have to deal with this or, and I think my point is that even if you have one thing going on in your life, and the guy across the street has one thing, and you think, Oh, his thinks easier than my thing. If you had his thing in five minutes, you'd be like, dammit, my thing, I'll get my thing back, or how do I get rid of this now? Like nothing? I don't know. You know, this sucks. Don't get me wrong. And diabetes is relentless. And it's 24 hours and etc. But there's a way to, there is a way to get through it and not right not have to live with all these feelings. And I think in the beginning, it's hard to imagine that's true. But it really is.

Jennifer Smith, CDE 1:03:24
And I think something around it, too, is actually opening up to the feelings in the beginning and letting yourself feel all those things. You know, the stages of grief, really let yourself work through that. Don't turn it off. Let yourself work through. I feel really horrible. Could I have done something about it? No, I couldn't have changed this. Okay, let's move on. Right? There's there's only so much that you can or you're going to just feel bad forever. I don't want that for anybody was the person

Scott Benner 1:03:58
here that I didn't get through that said every hospital should have a crying room. It's the soundproof room that you can go into the chair in a box of tissues that you just sit there and

Jennifer Smith, CDE 1:04:08
let it out. And garage is a really nice place for

Scott Benner 1:04:12
me. It's like ice cream in the garage in case you're one. Well, thank you very much for doing this course.

Jennifer Smith, CDE 1:04:20
Absolutely. Good. Very good topic. I'll talk to you soon.

Scott Benner 1:04:33
First, I'd like to thank Jenny Smith for coming on the show today and continuing to pour her great knowledge into this podcast. Don't forget you can find Jenny at integrated diabetes.com. And if this is the first bold beginnings episode, you've heard there's a whole series of it, you should go back and find them. Thanks so much to Ian pen from Medtronic. diabetes please go to in pen today.com To get started. And of course the Omni pod five is available at On the pod.com forward slash juice box

I don't want to lie to you. I'm tired. This is my last editing job of the day this episode and so for that reason, I'm not going to say anything else. Just thanks so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. I gotta go to bed


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