#1379 Love At First Slice
Jay is 72, T1D since he was in his 30s.He started out in EMS and nursing and got into teaching. He’s passionate about 504 plans.
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Scott Benner 0:00
Welcome back, friends. To another episode of The Juicebox Podcast. Today,
we're going to speak with Jay, who's had type one diabetes for 40 plus years. He's been in EMS nursing teaching, and he's incredibly passionate about 504 plans. 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. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code, Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. AG, one.com/juice, box. The Diabetes variable series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about, travel and exercise to hydration and even trampolines. Juicebox podcast.com go up in the menu and click on diabetes variables. Today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contour next.com/juicebox Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it one blood test can spot type one diabetes early. Tap now talk to a doctor or visit screen for type one.com for more info.
Jay 1:52
Hey, Scott, thank you for having me. My name is Jay. I started out my professional career in emergency medical services as an EMT paramedic. I even became a registered nurse while still working on the streets, and then got into EMS education. I realized that Elvis Presley was right with his song cold Kentucky rain, and used my RN to move into a hospital. Worked in neonatal ICU and adult ICU for several years and then move my education forward. And ended up teaching nursing for 27 years with other collateral duties. You know, how employers are they want to assign other duties for you to deal with. And so I ended up on the school safety committee, and that ended up with having to liaison with a middle school next door to us. And so we got into learning about lockdown and all sorts of evacuation things, additionally, because I was halfway good with throwing income paper. I was detailed to writing regulations related to nursing education, and now I currently do some beta testing for HIPAA FERPA, type of agencies on the Apple architecture. How did I get into Juicebox? The podcast, I really got into it for through the Facebook page and my diabetes started in my 30s. I was diagnosed type one after failing orals before they got good lab test to differentiate type one to type two. Went to MDI until about 25 years ago, Doc threw me on a Dexcom CGM, then about 25 years ago, because of hypoglycemic un awareness, and so then my pump journey has gone through animus, tandem pods. I've done clinical trials for several different pumping companies. One of my first was a u5 100 to go into a pump, and that failed because of kept getting the pod knocked off. I'm currently doing the limited release with insolette for the Apple platform, and that is going well, Jake, Jake,
Scott Benner 4:38
and tell everyone you're 45 years old. You got all this done the last 15 years. Right now, you just told me, like,
Jay 4:45
actually, I got it done in five years. My God, we
Scott Benner 4:47
spoke before we started. I know you're 72 you were diagnosed at 30. So were you an EMT before you had diabetes? Yes, you are. That's interesting. Okay, let's learn a little more. About you, and then figure out how you got involved in all this stuff and pick because there's a lot here. Also you, you had me on the first 10 seconds, I was like, I gotta go figure out what cold Kentucky rain is about. Look up. Elvis Presley, oh, don't worry, Jay, searching for his lost love through the cold rainy Kentucky. The song captures the feeling of longing and heartbreak. Is that about, right? But
Jay 5:19
the thing about it was that when you work in emergency medical services and you're outside working on a car crash or something of that nature, and you've got cold Kentucky rain dripping down your backside, it's a an awakening experience that you sort of want to get away from. Hard to focus,
Scott Benner 5:37
too, I would imagine. Okay, so, I mean, let me ask for a second, like, what got you into emergency services originally? Do you remember what your calling was?
Jay 5:45
It was strange. I was studying engineering in the dorm, they put out a notice that said, Hey, why don't some of you students join up with the Red Cross disaster team, and we'll teach you first aid, CPR, a few other good things. And this actually caught my attention. I went down that path, and along the way, was invited to join an EMS education, but got picked up an EMT card in Kentucky. And what was sort of ironic at that time was the TV show emergency playing off of the LA County Fire Department. Was a big TV show. Now it's showing up in reruns. But what was entertaining was that almost every paramedic in the United States was six feet tall, had dark hair and a mustache
Scott Benner 6:43
because of that TV show. You think, Well,
Jay 6:45
I don't know if it was the TV show or if they were. They were that good at picking up what the preponderance of first responders looked like, because it seemed like that, Oh, everybody was handsome
Scott Benner 7:00
and dark and tall and all that. That was it. I can remember one name from one character from that show. And other than that, nothing's coming to my head. But
Jay 7:10
how about Randy man tooth?
Scott Benner 7:11
Why is the word gage popping into my head? But somebody's named Gage? So there was a character named Gage. Okay, that's all I can remember. And but I remember the whole opening and how, like, crazy exciting it was, because it was a lot of, like, the opening of the show. I must have been a really young kid, but was like a first person shooter, almost, camera angle of like, the fire trucks leaving the firehouse at first, and then they, like, pick them up on the street and go through and like, yeah, I remember all that. That's crazy. So you're not sure if the producers did a good job of figuring out what firemen looked like or vice versa. No,
Jay 7:43
but I can say one thing, and this pops up in the Facebook Juicebox page, and that is Medic Alert Notifications. What do paramedics look for? Starting in the 1970s through today, paramedics are taught to look for medical alert jewelry at the neck, the wrist and the ankles, tattoos, because they can be injured read made illegible by road rash. In other words, somebody that got thrown down the sad term, but anything other than a standardized medic tag that has probably the star of life, which is that six pointed blue on white, see it on the side of an ambulance a lot of the time, but things Like the little clip ons to a watch band. Those are not really good because they can be ripped off. The watch band stays. But where did that little metal clip on notice go? And
Scott Benner 8:52
people think, because I've done a whole episode about this with an emergency services worker who said the same thing, like, we don't look at your tattoos, neck, wrists, ankles, and that's what I'm looking for, very quickly. I think that shocked everybody when that person came on and gave that interview, but I had known that because of I'd been a volunteer fireman for a few years when I was young, and I was aware of it. So I keep seeing people talking about it. I'm like, Look, it's nice. And you know, you might get lucky, like, maybe somebody will turn your arm over to put an IV and it'll say type one diabetes on you. But like, what if that tattoo blends in with everything else or whatnot, and I don't know it's the
Jay 9:29
other thing is, I went back to that night in Kentucky, cold, Kentucky, rain. I'm not gonna see in limited lighting. A tattoo. I'm gonna be feeling in the dark. Yeah?
Scott Benner 9:44
I mean, it makes sense when somebody breaks it down for you, you know, but sitting in your bedroom with like a giant tattoo on your calf, you're like someone will say this, but you know, not the case. So, necklace, bracelet, anklet, right? That's what you should be wearing.
Jay 9:56
If insolent is a sponsor this. A good one. OmniPods need to say insulin pod clearly on the outside of them,
Scott Benner 10:05
because they are used for other things as well. No,
Jay 10:08
because if I'm feeling this thing in an emergency situation, working as a paramedic, if I feel this thing on a person's arm, it would be nice if it had in clear block letters, insulin pop.
Scott Benner 10:22
I wonder if people would revolt if they started writing on the pod. It's interesting. You know what I mean? Because, for because the great I mean, for your perspective, it makes 100% sense. And then somebody else might say, I don't want that. To tell people what I'm I don't know. Boy, that'd be a hard one. But I take your point. You do this, you kind of work your way up through the ranks, and then you complete your RN while you're doing work on the road. Yes,
Jay 10:47
how was that? That was great, because I'd already been to paramedic school. Was already working with the paramedics. Matter of fact, I remember one night we made a an accident with injuries. Car was in a creek bed, and I'm hanging upside down, more or less starting an IV in a person waiting to be extricated a car down in the creek bed, but not in the water. And one of my nursing instructors had stopped also, and comes over and says, I'm a nurse. May I help? And I called her by her first name. She said, Oh, it's you. What are you doing? I said, I'm down here starting an IV. She said, Well, good. I don't have to worry about you for IV check offs in two weeks because we hadn't covered them in nursing school yet. But I
Scott Benner 11:37
guess if you could do them hanging upside down, I'm going to assume you can do it that,
Jay 11:41
and then going to neonatal ICU, starting IVs on premature infants, was just a carryover. It micro. It was a micro miniaturization. The one thing that was interesting there was when we had infants of diabetic mothers. This was so far back that the way that blood sugar was checked on an infant of a diabetic mother was with the old pink labeled bottles, I believe the manufacturer was Ames dextro sticks. And we would do it. We would cut those in half to save resources and do a heel stick. And then it was a color metric. We had to eyeball it before meters and all that other good stuff came out. You got
Scott Benner 12:29
to grow up with it from a professional standpoint. But did you ever think you might get type one? Was it in your family? Or was it a surprise?
Jay 12:37
Surprise? Well,
Scott Benner 12:39
it's interesting. Do you remember your diagnosis at all? It's
Jay 12:42
going to be strange.
Scott Benner 12:43
Oh, really, you're going to tell me a story that I'm not going to have heard before. I hope so good. I
Jay 12:48
hope this is one you haven't heard before because of my nursing background. When the IV fluid, dextrose gets spilled on the floor and it isn't wiped up, well, you'll start noticing black spots on the floor. I started being able to associate hold it. We spilled dextrose on the floor over by that bed in the intensive care unit, and now they're black spots. We must have spilled some dextrose when men go walk up to the commode in their home and let rip with a stream of urine. There's a splash, and I started noticing black spots around the commode in my residence. Get out of here.
Scott Benner 13:31
There you go. Jay way to come with a story no one's ever heard. Listen, I've never heard that before, and I have to share with you, and perhaps you saw this, but in the Facebook group last night, members shared that they were low in their car, and very uncharacteristically, just didn't have anything to help themselves with, and kind of panicked a little bit, and looked around their car and found, I'm not kidding you, it must have come out of like a shopping trip, a Can of, like condensed chicken noodle soup in their trunk, and she popped it open and drank it down and grabbed her blood sugar and brought it back up. I missed that one, and I thought, when I read it, I thought I didn't imagine people would ever like continue to be able to tell stories where I was like, I've never heard anything like that before. Found super nerd trunk, actually, if she's listening, you should come on the show. I I'd love to talk to you, hear that story first person.
Jay 14:27
And to go with that, because I was teaching endocrine nursing at the time, I was working with several of the meter companies, and just happened to have in my briefcase, backpack, whatever it was I had a couple of meters at home, and I said, black spots on the floor. I'm gonna do a finger stick.
Scott Benner 14:50
Are we calling the black spots like mold from the sugar? Do you think? No,
Jay 14:54
they were actually oxidized glucose. When you look at the oxidation of glucose. Yes, it does leave behind a cup a stream of or layer of carbon molecules as the water evaporates. That's nuts.
Scott Benner 15:07
What was your blood sugar when you tested? Do you remember over 400 so do you diagnose yourself right there with that tester?
Jay 15:16
Well, the other part is that my wife is also a registered nurse. And we looked at it, looked at each other, and said, Yeah, we got to see Doc, our family practice, Doc, you do what we were like. And so, yeah, it was self diagnosis, but he had to confirm it. So that insurance and all the other
Scott Benner 15:40
Yeah, sure, but you you knew, though, right then and there? Yeah, yeah,
Jay 15:44
it was, you know, the light got turned on
Scott Benner 15:47
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Jay 18:10
meet your wife at work. I was working as a medic at the time, and one of her co workers had been in a first aid class that I taught, and they had a problem in the food service in the hospital, and they were only able to feed the patients. The cafeteria wasn't open for employees, so her co worker called me and said, This is before the days of pizza delivery. Would you bring us a pizza? So we had love at first slice. First time I laid eyes on her was looking through the lock door of a psych unit. Jay,
Scott Benner 18:46
you've got, you've already given me so many different titles for this episode. I think you said Let her rip when you're talking about paying and and love it first place. I feel like I'm gonna have like, 13 things to choose from by the time we get done with this. But you have so much information in your head. Okay? I feel like I want to fast forward through, you know, you, you know, okay, you found out you had, you had type one. Is that how they diagnosed you? Yes, okay, because
Jay 19:08
I was a little overweight at the time, and Doc put me on Metformin, and it had no impact. Okay, yeah, so he said you, but if Metformin doesn't do anything, you must be type one
Scott Benner 19:20
to have you ever had, like C peptide or auto antibody testing?
Jay 19:24
I've had C peptides to get an insulin pump, okay? And those qualifiedly. And the other part, the antibodies are ambiguous, meaning
Scott Benner 19:37
you don't have any traceable or there's not enough.
Jay 19:40
It's, it's not clear. Oh, I see, huh, but you use insulin. I may be, I may be one of those oddballs that's got both type one and type two.
Scott Benner 19:50
Yeah, it's funny. We used to laugh, like, I've done it, where people were like, I have both types of diabetes. And I can remember thinking, like, you can't have both types of diabetes, can you? Yeah? Now. More and more. You know, at least it's the way they want to talk about it. Maybe just for insurance purposes, I don't know. Maybe it's because of GLP medications that it's starting to come up more. But, you know, they're saying, Look, I have type one diabetes. This is, you know, an immune issue, and I'm really insulin resistant. And if I didn't have type one, you'd say I had type two because the insulin resistance, etc. And it's, it's interesting how they, I guess, how much of the way we think about ourselves, health wise, is dictated. A little bit about the the insurance companies, you know, charting, you know, and what they call things, I don't know, it's a it's a little weird, but so you've been the whole time. You've, you know, basal insulin. You're bolusing for your meals. You don't do that. Your blood sugar gets very high, etc, so on, right? Yeah, okay, I guess let's kind of bounce to, like, stay with your professional life for a little bit, because you listed so many things when you started talking, I was like, God, it's like, you've lived three lifetimes. But EMS, you become an RN, you start working there. How do you get to teaching people?
Jay 21:04
That was a really good look. The good Lord opened the door. I was getting burned out in ICUs, doing, ICU nursing. I started thinking about cardiac resuscitations, the resuscitations that go on when a patient's trying to die in an ICU. My wife was working elsewhere as an RN, and there were nursing students on the unit where she was a nurse manager, head nurse, whatever title, and the faculty member came to her that was supervising the students on her unit, and said, you know, a nurse that would like to teach, we're looking for somebody to teach. And my wife said, Yes, I did. She picked up the phone, called me and said, How fast can you get an over to the nursing school do their application. Because it was a day off, I said, I can clean up and go look presentable. And I ended up teaching, wow,
Scott Benner 22:09
so you just, you couldn't I mean, do you run out of adrenaline at some point? Is it just like it constantly being in fight or flight? Is is that the part that's exhausting?
Jay 22:21
Yes, that that is one of the things, is you almost lose your humanity. Okay, here you are fighting, literally fighting death. It's a tiring battle. You know?
Scott Benner 22:35
It's funny that you put it the way you did, because not nearly apples to apples, but I've mentioned on the show before, when I was younger, got a friend of mine got me a job, like collecting credit card debt. And the same way I would explain to you why I stopped doing that, is what you just said, is like I started feeling like I was losing my humanity, like I didn't it didn't matter that, you know, these people, some of these people, ran up debt with no, you know, visible way to pay it back. But it didn't matter in the end, like, once you were, you know, face to face, over the phone with a person who just can't or won't pay or whatever, and it's there they start telling you about their lives. I just and then it's your job to listen to that whole thing, you know, my husband has cancer, my house burned down, like, you know, I lost my job, and then you're like, I don't care, make the payment or they're going to come take your car. I just, I couldn't do it anymore. It's just like, I can't be a part of this. You know, with
Jay 23:29
your history of being a first responder in your background, you see that, and you know that when they say, my house burned, you really know it's
Scott Benner 23:41
contextual. Yeah, I've seen people lose their homes. I've seen people die in car accidents. I've seen people get maimed in car accidents and then can't work, and to look at them in the face then and say, you have to send money or else. I just one day, I was like, I can't so I can't even imagine literally being there and watching these things happen to them over and over and over again and and then just having to get that energy up to do it again and again and again. What do you know? What's the lifespan of a of an ICU nurse? How long do they usually make it?
Jay 24:09
I've been retired for 14 years,
Scott Benner 24:14
and I don't know. Some people think it's better than others.
Jay 24:18
Some people have better support systems. Some people have tougher skin, and we're all individuals, and so you really can't compare, yeah, one to one, I guess doesn't work.
Scott Benner 24:34
I can just say, if it's hard for you, I can imagine it's really difficult.
Jay 24:39
My Biggie coming off of back to the podcast, is 504 plans, Jay,
Scott Benner 24:46
I gotta tell you, like in your notes, you're like, Why do I want to come on the show? Just those 504 plans. And I, I remember thinking this morning, why does Jay like i with respect? I thought Jay is an older gentleman. Like, what's he talking about? 504 plans. Let me ask you. A lead in question, and then we'll get you to the next one. How does a man in the 70s find a podcast
Jay 25:05
several ways. One because of my nursing background, I would and teaching nursing, teaching endocrine nursing, paling around with the nurse in my indoors office, working with the nurse reps, the manufacturers, reps, the Dexcom, the Animus tandem, I learned a lot about the education of patients in an endocrine office, and then that tied back to something that happened. I guess it was actually the late 80s, late 1980s can I put this story on, on Juicebox a couple of times, but where I got by seed, planted for 504 was much before 504 really had even become an issue. I've forgotten whether this was a first or second grader, but it was a transfer student, transfer at beginning of the year in January. So over the holiday break, child changes schools about 15 minutes before lunch. This child pulls out a little plastic box. This is in the meters had come out. Doesn't finger stick. Meter pulls a vial, pulls a syringe, draws a sliding scale and injects themselves quickly. The teacher was so overwhelmed, they didn't have time to respond before the child was finished, right? They were, they were into, definitely, definitely. The seven year old was independent. The sad part was that the school had just implemented, the school district had just implemented a zero tolerance to drug paraphernalia.
Scott Benner 27:03
Oh, the kid's gonna get in trouble. The kid
Jay 27:07
was taken to the police station for possession of drug paraphernalia.
Scott Benner 27:14
It's always fun when people can't think, okay, okay. Now we got the seven year old. Is it the police station. How do you witness this? How do you know about it? Professional
Jay 27:24
channel, okay, and needless to say, the parents sued and said, you know that here? And here's a good word, pneumocephaly. Break it down. P Mo is air. Cephalid head, the El wise condition of so there were some people in that county school system that had Airheads.
Scott Benner 27:50
Isn't it crazy, where people just can't, like, stop and assess it, you know they mean, like, yeah, there's a drug. This is not drug paraphernalia. This is medical equipment. So
Jay 28:00
anyhow, they found Americans with disabilities. Act had come out. They found out that diabetes was protected. So yeah, this kid could do what they wanted to. Didn't even have a school nurse at the time. They didn't have 911 it was so they were still implementing that. But anyhow, I learned about it through the professional circles that had come about. So that's what got me planted the seed. It didn't germinate for a while, until, actually, I was teaching. And then we started looking at lockdowns in the safety committee that I was on while teaching nursing. And we started looking at, well, what about these kids in wheelchairs that are in the school, did need to evacuate from the school campus to the community college campus to shelter while they've got a chemical leak in the building, that sort of thing. So that's what, where I learned about 504, plans. And then started, as I was pumping and getting into Facebook, started realizing, hold, there are a large number of posts my child's school isn't playing
Scott Benner 29:06
by the rule book. Yeah, there's twice a year that it becomes an incredibly popular conversation the lead up to the school year. And actually, when the school year ends and the summer starts, I think a lot of people think, Okay, I have to get one of these ready for next year. And then, of course, people you know being diagnosed throughout the year who come in and eventually will speak up and say something went wrong at school. And somebody says, Oh, do you have a 504, plan? And then that starts that conversation again. Like, I don't know what that is, because why would you know before your kid was diagnosed? We don't do a great job of talking about it. And a lot of schools, not a lot, but a fair amount of schools that you see people talking about will just ignore the 504, plan, or argue with you about what can be in it. Or, you know, sometimes you are with a private school, and they'll, they'll say, like, well, we don't have to abide by that. People run into a lot of different
Jay 29:55
problems. Let me, let me. Let me jump in on that. Yeah, privates, there. Are two sections that come into play on 504 plans. Title two is public facilities, and Title Three is private facilities. And so yes, the private facilities have to accommodate a lot of times they will say we don't have the resources and try to slip the bull between the horns. But yes, there's, there is the title three, and then there is an escape for the faith based organizations. Yeah, I've seen that as well. The only problem is that the faith based organizations are included if they receive government funding. Okay, but now hang on. I just saw this one in a But
Scott Benner 30:47
Jay let me go for a second because I thought 504, plans, they didn't apply to private schools unless the schools took federal funding. Is that how that works? As far as you know, I can look it up, but I think that's what I'm that's, I think there.
Jay 31:01
That's sort of a gray area, because it's like a private business, if it's large enough, it has to accommodate,
Scott Benner 31:11
oh, this side. Oh, yeah, see, it's again, I don't know enough about it, but I don't think anybody else does either. And I do think the schools often do what insurance companies do, they just they turn you down the first time to see if you'll stop, you know, and that does happen a lot.
Jay 31:27
And then, to add insult to injury, state laws impact the action that's local school boards can implement, for example, if the state has in its Nurse Practice, act that a school or a nurse working in a school may delegate certain listed medical activities or nursing activities to an unlicensed purse trained person. That's fine, and so that school can take care of the key 1d the insulin dependent child, and because of obesity, we're even seeing type twos that are insulin dependent in schools. The thing about it is, though, that if the state law says no nurse shall delegate, and it includes certain nursing activities that the child needs to have done by an unlicensed staff member. Then that state has a difficult situation to deal with. They have contradictory
Scott Benner 32:42
laws. Yeah, listen, I just did some Googling around it, and every return almost takes you back to like a lawyer's website. So obviously, there's confusion in the world. When there are so many different states and states have different laws and different rules and regulations to follow. I think it's where all the confusion comes from. Also, when you see somebody ask a question, then somebody's like, no, that's not right. This is right. It could just be right for where you live and not for where that person lives. Even your explanation tells me that it's a confusing, maybe on purpose, confusing situation, because I think the schools don't want, I mean, listen, I only have my own, you know, experience to go from. But I wrote a pretty, I think, reasonable 504 plan for Arden when she was going into kindergarten, and the school counter at countered me with a 504 plan that had like, four or five bullet points on and I ended up going back and saying, like, if you think these, like, four things you wrote down here are enough, I'm like, Yeah, I don't think you're going to be able to keep her alive for a month like this. And you know, oh, plenty of kids that come through here with type one diabetes, and we know what we're doing, and blah, blah, blah. And then you meet those people, and their kids blood sugars are like, 250 all day long. And, you know, and then they've but the school's like, See, they're fine. I'm like, That. Mean, that's not going to be okay for us. Their brains working in syrup. Yeah, right. It's a little hard to think when your blood sugar is high. I mean, let's not do that to people, right? And then later, you know, say, Oh, they weren't good students or they but I'm like, You're not giving them a chance. But that's
Jay 34:10
why, that's why law enforcement is taught to look before they go for alcohol intoxication. They they ask, Do you have any medical conditions I need to know about, right?
Scott Benner 34:22
Yeah, because a lot of things can alter you. I mean, my experience Jay was just that I didn't know what a 504 plan was. Somebody told me about it. I think I found an example that the ADA had. I might have found an example that JDRF had, and I cobbled them together, took the parts out that seemed like they were important to Arden, kind of put it together back that way. I didn't know what it was. I only knew I was doing it because I was supposed to. You get to the school, the school, they don't know why, but nobody knows you know what I mean. And then you just, sometimes you you end up amicably, and sometimes you end up in an argument. And just, it sucks,
Jay 34:59
I'll tell you. And. It, it does. And then, then you get into the Office of Civil Rights, yeah. And also,
Scott Benner 35:04
a lot of people don't want to be involved in all that. You know what I mean? If somebody would have said to me, Oh, you're gonna have to call an attorney for ardent 504, plan, I might have been like, I'm not gonna do that. You know? Like, it's ridiculous that, that we can't agree on some basic ideas about what kids with type one need. And, you know, why can't that just be like, you know, where everyone's rules start, and then you can, you know, change from there. But we're at least going to have people in the in the school that know how to use glucagon, you know, if the kids self sufficient, we're not going to drag them around to a nurse's office if they don't have to be cool, if you want to follow their CGMS, and if you don't, okay, whatever, like, you know, but don't block us from using the Wi Fi and then tell us you're not going to follow it. You know what I mean? Like, just simple stuff.
Jay 35:49
Well, the there are two Facebook groups that support these narrow segments that you're seeing in in the Juicebox group, and those two groups, one of them I actually created a few years ago, is 504, diabetes. And one of your assistants, I can't remember which, which title she has. Nico is always pointing which will she'll drop my name in a one of her comments.
Scott Benner 36:22
I do see you and Nico interacting quite often. That's, that's, she's wonderful, yeah.
Jay 36:26
So yes, Nico and I have a good working relationship to pop up, and usually I'll end up inviting people to either 504, diabetes or one that Carrie Murphy has put together that is really great, and that is following T 1d
Scott Benner 36:46
I think she's emailed me a couple of times, but I just don't never have the time to dig into it. You need to get her on the show. Yeah. Okay, that's good to know, because I also run into the broader issue that the Facebook group is is pretty big. And if we start letting people, you know, for the lack of a better term, pimp their thing all the time, then it just turns into that, then people can't talk. If I told you how many posts get, you know that don't go up because we we don't want people selling their books or their CGM covers, or they, know, telling them about my group that I made, or I'm walking for this company. Can you do this for me? And like, if we can't let all that stuff happen, because it would overwhelm the group with it, would the group ended up looking like a flashing billboard in Times Square, right? So we just have a it's a blanket rule, because I don't know what people think, but like, I'm one person. I have a life, and I make the podcast, which takes most of my time, and then I do my best to manage the Facebook group, which takes a lot of my time. And there's lovely people who donate their time to kind of look over the group and stuff like that. We don't have a company overseeing it like, you know, there's not an army of people looking at every post. So blanket, you just can't pimp, and that's the end of it. And you get, your stuff gets removed. If you do, we also don't want people selling their diabetes supplies, because, you know, we're giving away their diabetes like you think, Well, why can't you let people give their diabetes supplies away like you would in a perfect world, that would be lovely if they wanted to give something away, except then 55 scammers will come in and pretend to be giving something away to steal $20 of shipping money from you and like, it's just it, you know, and it becomes that, and I think it's possible to what you just mentioned, curry, right? I think she just got mixed in with all that in my my inbox, to be perfectly honest, because Pete, I'll email you, yeah, thank you. My day is full of people wanting to sell something or use the platform I have to elevate their thing like it's just, I can't, I don't have time, so I just don't look at any of it. And then I it sucks, because then sometimes real stuff gets lost in the shuffle. You know,
Jay 38:52
I have one that has gotten lost in the shuffle that goes back to my being an educator. Old teachers retire, and they changed their handouts. I changed from nursing to diabetes, but the one that we talked about was the Office of Civil Rights. The problem is that there's several of those in the executive branch of the US, government, education, justice, health and human services. All of them have an Office of Civil Rights. So one thing that would be good for listeners who are commenting, I got in touch with the OCR. Which one? Yeah, it's like when I, when I most of the time, if I'm thinking about it, when I use Ada, I'll put ADA hyphen act or law when I'm referring to the Americans with Disabilities Act, and I'll use ADA hyphen, or when I'm using when I'm referring to American Diabetes Association
Scott Benner 39:47
candy that they both have the same acronym. Oh, yeah. And
Jay 39:51
then we're into more education. And something that I see is that many prescribe. Drivers and users. I mean, watch posts with this set of glasses, the prescribers and users blow off training. How hard can a CGM be to use? Oh, you can slap it on. You can get the wire under your skin. But what does the data mean? Maybe
Scott Benner 40:23
you are too. But I'm always surprised when somebody tells me, my doctor said, My endo said, Oh, I'm not familiar with that pump. I think, Well, how long would it take you to become familiar with it? Just isn't that your job? Like, do it, you know what I mean? Like, What an odd thing to be involved in something like that. And then look at somebody, oh, I don't know that one. Well, I
Jay 40:43
actually had that happen. I imagine one of the pump companies had a layer and share program, and I was a little bit too late jumping on because I needed to get my endo sign off on, because it was prescription material the endo nor there I'm going to use CDE. I get tired of trying to say five letters. Fine with me. But their educator was unfamiliar with the pump also, because they didn't have a boots on the ground rep in the neighborhood. So I knew more about the pump that particular brand than they did. So the prescribers that hand will say, hand a handful of samples to a user and say, Go, try this CGM. And the user then says, Oh, thank you for the new model. I've been using that brand in the old their old system. It can't be, you know, I don't need to know anything. Every time Dexcom has changed models, over 25 years, I've sat through a two hour orientation for every model. It is amazing. What is in the lesson plan of orientation that many users blow off and then in groups dedicated to tandem or Dexcom or pod or even in Juicebox, I'm having trouble with my whatever device. And the first question is, did you go to orientation? No, I've been using that brand for 300 years. I don't need it
Scott Benner 42:31
changes a lot as it goes along. I also don't know, you know, it's so fractured the way people even learn about devices, right? Sometimes your doctor's office just gives it to you and says, Here you use the other one. This will be the same. You'll figure it out. Nobody reads the instructions. You hear people say all the time, like, I was supposed to wait for a trainer, but a trainer never called me, so I turned the thing on. It's just it's such a mess. I mean, people's lives are so busy. Jay, you know what? I mean,
Jay 42:58
did they call the trainer? No. I
Scott Benner 43:00
mean, yeah, I don't know. Sometimes yes, sometimes no, sometimes they just sat back and they're like, I thought somebody was supposed to call me, and then it doesn't happen. And one night, they've got a free hour, and they're like, I'm gonna learn how this thing works. I would imagine that if we all understood the things we were using more completely, we'd have fewer problems with them, for certain. But, man, I don't know how to get to that, but do you have thoughts about it.
Jay 43:21
Yeah. And then the training. And then the other one. My favorite one is the tech companies, the tandems, the Medtronic, the insulate Omnipod, beta bionics, Dexcom. They've known for six months that Apple was going to release iOS 18 next week. Why aren't they ready? I don't know. My thought as a nurse is that they are doing malicious dereliction to keep their users safe, because a preponderance of the code in an update, whether it be Apple or Droid or whatever the manufacturer is, the preponderance of the release new software, operating system type stuff is to prevent malware, to prevent malicious code from getting in the door.
Scott Benner 44:15
So the way it always occurs to me is that we look at these companies and we think of them as, like, these giant, huge corporations, and maybe they're not as big as we think they are. Like, maybe they don't have the people on staff to do the testing for the new iOS. Or maybe they have fewer than they you know what I mean, like, can it just be a problem with staff? Like, you know, it just takes them longer, or people are working remotely now. So, I mean, I don't know. Do they work as hard if nobody's watching them? I have no idea. Because I take your point like, how come the day iOS comes out? You're not like, Hey everybody, here's our updated blah, blah, blah that's already been through Apple certification, and we got it off to the FDA already, or whatever they have to do. You know, we've done all of our things, and here it is. Yes, and meanwhile, you get a note that says it's probably going to work so, but we haven't verified it yet, or don't update that one. You know? Yeah, we can't support that. I don't know. Like, I have a hard time thinking that it's a group of people who look at the problem and go, ah, we don't care about that. That's my thought.
Jay 45:18
I think it goes back to one word, thalidomide, to that case?
Scott Benner 45:22
How make your connection? For me, the enabling
Jay 45:25
legislation for the Food and Drug Administration was revamped following thalidomide in the 1959 1960 time frame. There's even an episode or two of Call the Midwife TV show that deal with it in England, and it impacted England and Germany. And I believe the way that things happened in the US, the legislative arm of government said, never in the US. We don't want that. And so everybody is afraid that they have to cross all the t's and dot all the i's with FDA.
Scott Benner 46:05
So you think that the companies are so concerned that they're if they miss one little thing, they're going to be in trouble, that they just don't do anything, or they over prepare when they're doing it.
Jay 46:18
They over prepare, they triple check everything before they even release it for beta testing.
Scott Benner 46:25
They're afraid of their own shadow, where, in this case of the FDA shadow,
Jay 46:29
yes, yeah, or the the court system itself, or that they
Scott Benner 46:35
don't even know what the FDA wants, so they're there. It's hard to figure out what to do.
Jay 46:39
That's another good one. Yeah,
Scott Benner 46:40
now that I that I've heard from people before that you really get into some of these meetings. The FDA almost doesn't know what they're asking
Jay 46:47
you for. No, it's a strange world. Listen to a TV commercial about a drug there's a person standing on the screen visually smiling, laughing, having a good time, and the announcer is reading, this will cause you to grow
Scott Benner 47:07
a third leg. Yes, you're gonna have diarrhea out of your eyeballs. Yes, exactly, maybe, or it scares the hell out of people. I saw somebody the other day, like scared to death about a black box warning on GLP medication. I mean, if you go dig into it a little bit, the occurrence of the thing that the black box was for was very, very, very infrequent, like, just very infrequent. But once it's a black box warning people don't, then go, Well, let me go find out how many people this happened to. They just like, Oh, my God, it's always panic. I have ads with a lot of companies. So I'm going to say something that I think every person who thinks that is going to think it's them, but I have this one specific person who told me, like, half of my job is making sure that we don't do anything illegal. That's what encompasses most of my day, making sure that. And, you know, listen good, yes, but keep in mind, big picture, half of this person's job, two and a half days of every one of their weeks, right? 10 days of a working month is spent just making sure that every word they say, every picture they show, every link they put up, doesn't break a rule, which means that that time, not they shouldn't be doing that, but that time is not being used for other things, like figuring out the iOS device, or, like everybody's so busy. And again, I want to say I'm glad they're following the rules, but it does give you an idea of what happens and why people maybe don't have a lot of you know, vigor at their job to get things hustling and get them done. Do you think about that ever?
Jay 48:40
Yes, every once in a while it depends on if I'm thinking left or thinking right. You can almost tell when my comments come whether I'm thinking sort of left brain or right brain. Okay, that the there are times that this person really got left, hung out to dry by their care team. They were handed technology and said, Good luck, or they were they weren't told how to learn or where to seek how to use their technology. And so yeah, those people, you need to go back to your team and get educated.
Scott Benner 49:26
It would be nice if the companies put out more user friendly, you know, videos and educational tools. But then you realize that those those tools, also go through an FDA process, and that every word is in there, and it's what, you know, it's funny. We had this conversation recently, but a person asked me why they thought the podcast was valuable for people. I said, that's because I'm just on there talking people tell their stories, and you pull out what you can from them. But moreover, it doesn't sound like I don't know a doctor who just spent the last seven years researching something is now. Reading either a research paper, word for word, line by line. It's not boring. These people are like, Well, can you educate me better? I said, Yeah, we made you a video, and then the video is boring, and the first three minutes of it are like, you know, legalese. And then somewhere in the middle, there's a vague description of what to do, but it doesn't get too specific, because if it gets too specific, it might not be right for everybody, and then it ends up being useless, and then the company sees that nobody uses it, and probably takes the air out of their balloon. And you get that kind of apathy on both sides at that point. I don't know. It just seems like such a I understand why the rules are in place, and I want everybody to follow the rules, but when you do something that specifically like that. It becomes just not a reasonable way to communicate with people. There's
Jay 50:47
one company that has in their literature, actually, it's in a user manual, and in the very back of it, it says something to the effect of no person can modify what is written in the warranty. Okay? And then you look about five pages in front of it, and it says, this book is the warranty, and you must do everything. You must do thing. You must use our product according to the User Guide. Yeah,
Scott Benner 51:25
that's a disclaimer to protect them in case you mess something up or or even if something goes wrong, they can say, Oh, you didn't do it exactly like this in the book. And yeah, like a lawyer put that there Right?
Jay 51:36
Oh, yeah, that's exactly what it is. It's legal ease, clear and unambiguous, but then on the company's website, it contradicts the User Guide. Oh, yeah, right, because you know so the webmaster, hold it, is the webmaster a person, so no person can change or offer any other information other than what's in this user guide,
Scott Benner 52:01
do you imagine, like being like, stepping back and looking at it, that's a misunderstanding between the person who wrote that and the person who wrote the other or maybe they just didn't understand, or it's, I don't know, even just wrong, but not on purpose.
Jay 52:15
I think that the company's checks and balances are inadequate.
Scott Benner 52:21
Listen, they all got so many people working for them. Like it's interesting that it's, I don't know it's interesting that it can't be done. But is that that's a is that a shortcoming of a company, or is that a human shortcoming?
Jay 52:32
I would say that it is a procedural shortcoming. One of the things in television production is a continuity editor,
Scott Benner 52:43
yeah, yeah, like an eye in the sky who sees the whole thing and is in charge of making sure one thing agrees with the next.
Jay 52:49
And for example, they make sure that the actor in one scene is leaning up against the left side of the door. And then there's they switch to a different cut, and they splice the the video at that point, and here they are. Instead of leaning up left, they're leaning up right, because all the script said was leaning against door frame.
Scott Benner 53:13
Jay, are you a football fan?
Jay 53:16
Not really, no.
Scott Benner 53:17
How about sports in general?
Jay 53:18
Uh, I spent many times on the sidelines dealing with medical emergencies, okay,
Scott Benner 53:24
but not playing or being involved watching as a specter, okay? So what I was gonna say is this, I am 100% for people having the ability to go get new jobs and do the best for themselves that they can. But what ruined the NFL for me, was free agency, because you take this time to build this cohesive unit right, these people who knew each other backwards and forwards, the guy to the left, you the guy to the right, you knew what you were going to do. You were a well oiled machine. It took years to get it that way. And then all of a sudden, players, you know, and again, no one's arguing with people having, you know, the freedom to go look for another job. I think it's the right thing to do, but it's what hurt football, is that now you get this person who's like, well, I'm going to leave now. I'm not part of the team anymore. I'm going to go over here and be part of that team. That team gets a better player, but might not be any stronger, because their team cohesiveness is not great. You've just lost a piece of yours. Now you got to bring in a new person. I think this happens in business too, right? Like somebody's good at their job, and everybody goes, Okay, the Department of XYZ is being handled masterfully by Beverly. Okay? And so we don't have to think about that anymore. And then two years later, you realize Beverly left, she got another job, and you know, the next person came in and was like, What am I supposed to do? And no one knows. Like, everyone's just doing what they think that they're supposed to be doing. You come in, you find these rules, like, you know, punch people sit around you and even tell you, if there's a training, this is what we have to do. They often don't even know why they're doing what they have to do. You know, that's something I've learned years and years talking to my. Wife about how many people are doing functions every day. They're getting them done, and they're they're correct because they're following the rules that are written down. But if you ask them to tell you why they're doing it, they have absolutely no idea. Like they don't know why they're pushing the it's it's the show Lost. They're pushing the button every day, but they don't know why they're pushing it.
Jay 55:18
It brings to my mind a good book that I read leadership principles of the Navy SEALs. The author was cannon, and it's a team. Everyone on the team needs to know what is the mission and how is it going to be executed. And this same thing is true in the diabetes device technology, everyone on the team needs to know, what is the mission, what is the exit strategy, that sort of thing. Yeah,
Scott Benner 55:52
I wish I could tell a story that I can't tell, because I think it would be wrong. But, and if I just say it the generalization, everyone's going to apply it to some, some other company. And the truth is, none of you know which company this is, but just keep in mind, if you think you know who I'm talking about, you definitely don't, because that's somebody I never ended up actually doing business with. But I sat in a meeting with, you know, God, five or six people you know supposed to be professionals, and they look at me and they say, Well, what do you think we should be doing? I was like, you're asking me. I was like, I make a podcast. You're trying to buy an ad on a podcast. You know, you want me to write the ad. And it wasn't just that. It wasn't just like, tell me what you think people would like to hear, like, that kind of thing. It was we have this thing to accomplish, and we don't really understand what it is, and we don't really understand how to get to where we need to go. Do you have any ideas? And I'm like, Oh God, if you don't know, aren't we in trouble? And that is why I ended up not doing like. I didn't follow through with them, because I was like, these people are out there in the world trying to talk somebody into something. They don't know what it is or why they the person might want to use it. They don't, they don't understand it at all. And, I mean, there's a group of people, and not one of them, like said something that made me think, oh, they understand. I don't know, man, it's, it's everywhere. You know what? I mean,
Jay 57:17
I think you and I have seen, we've we've been to the mountain. The thing is that the healthcare team needs to educate the users better, and the 504, plans need to be more accepted. And the whole thing is that the technology needs to be congruent. I mean, it's it's training, education and technology, and it comes across everywhere you You and I are two good choir boys on this one we
Scott Benner 57:51
I hear you say that, what I think is, there's the kid who needs the help, there's their parents or their guardians, there's the school at the administration level, there's the school at the teacher level, there's a school at the nursing level, there's your doctor, who you don't have direct contact with, so you're probably talking to a nurse practitioner or your CDC, CD CES, and then maybe the doctor. Now I don't know what we've we're up to, we're up to the kid, the parents, the administrator, the teachers, the nursing staff, the other staff at the school, the doctor, the nurse practitioner. I got nine people now involved in this right hand doesn't know what the left hand is doing. Is the saying, for a reason. How do you centralize what needs to be done? Do you need somebody like the ADA or the JD? It's not even JD, ref anymore, breakthrough diabetes. Like, way to go with that one. Like, do you need somebody at one of those big organizations to put together, like a, you know, a blue ribbon team of people who understand all these different aspects and put together an actual document that would work for everybody, and then let those people build off that document, so that at least the institutions would know the basics. Is that the answer?
Jay 58:54
I think that's part of it. And I think that I may be speaking out of school on this one. Well, it's
Scott Benner 59:00
a podcast, Joe, we're all speaking out of school. Go ahead.
Jay 59:04
The Assistant United States Attorneys, the A us as the a USA in Connecticut, did a marvelous job of educating the Connecticut school system. I have reason to believe that that movement may be spreading, okay? And that once that happens, all of the US, District Court, US attorneys, the A us as we'll be getting a memo to read them in on 504 particularly for CGM monitoring in schools, and that that needs to be a part of 504 plans. And so you carry that forward, hold it. That's part of a 504 plan. Then the doctors got to put in the diabetes medical management plan, the DM, MP has got to put it in there. And so it's going to be a dog chasing its tail. Not realizing it has a mouth full of fur. But once it gets once the dog wakes up, I think we're going to see a change. Wow. It's
Scott Benner 1:00:07
the only thing that makes sense to me is that that it's centrally dealt with. I mean, everybody has to have their, you know, everybody has to have their voice in the process. It can't take forever. You know, you can't let it get all caught up in an ego and and fear and everything like these. These kids need, these kids deserve, for there to be a basic understanding of the medical devices that they're using, the dangers that they're in, and the things that will help them both from, you know, emergent low blood sugars and being asked to walk around with a 250 blood sugar all the time. Like, people should know that basic amount and And don't you think, I think you could explain it to someone in 10 minutes, right? Like, I don't think it would take a weekend course or something like that. You could explain those things. Here's these devices. This is what they do. Here's why it's important. Here's why it's important to them today. Here's why it's important to them tomorrow. And you know what? Here's a little bit of background on what it's like to live with type one diabetes. It isn't as easy as you might think. Okay, now, you know, here's the things we're going to do for these kids. These things get done. They happen. We don't argue about them, we don't ignore them, we don't forget them. And if you don't do them, there's going to be some sort of a repercussion we're done right? Like write that down and make that the rule for everybody. And then if states, like, I don't know, like, you know, I don't know what we're talking about exactly here, meaning, you know, should this be a federal thing, or should it be state by state? But I think if you make it a federal idea of the basics, and then tell the states, look, if there's other things you want to add on to this. You know, come back to this office and tell us what you think why that's important, and we can make an amendment for you specifically if you think that's necessary. But just giving these kids the basics would probably, probably fix 90% of the problems.
Jay 1:01:55
Ah, yeah, Jay, I
Scott Benner 1:01:58
don't know. You've been alive 72 years. Man, how do you make stuff like that happen? You've
Jay 1:02:01
got to remember to grassroots level and and that brings up another one that my timer just went off, so I'm going to have to get this one quick, and that is the Americans Disabilities Act and refuse handling of the in the US Constitution, Article Six, clause two, is known as the Supremacy Clause. And there the states, local governments, local businesses can't overstep federal law, so this is where, when schools say 504, plans are federal, they don't apply to state law. Supremacy Clause just got them, yeah, but
Scott Benner 1:02:37
you're gonna need an attorney to do that if you get into that conversation, you're beyond your own personal understanding for most people, and now you're good.
Jay 1:02:46
Hold on. How many times have you heard the saying in the world of law in these United States? Quote, ignorance of the law is no excuse.
Scott Benner 1:02:57
No, no, but you still need somebody to hold them accountable. So if they're ignorant to it, as the school, for example, you don't just get to walk in with a tin badge you got from, you know, Kmart is Kmart, the whole place, Walmart, and say, hey, you know, you broke the role. You believe me. Now do the other thing like you. Somebody has to come in officially and say, you've, you know, these people have asked you for this. You've said no, you're not legally allowed to say no to that. We're compelling you to do that. You have 30 days to comply. But, like, it turns into that thing, you know what? I mean? That's true, man, the
Jay 1:03:28
thing, the thing about it, is that what the the teacher line comes back and that is, show your
Scott Benner 1:03:36
work, yeah, well, you want them to do the right thing, but
Jay 1:03:39
right and I've used that a few times to say to someone, okay, you you're telling me the law says ignorance of the law is no excuse. Tell me the law I don't
Scott Benner 1:03:50
know. Man, then you get back to like, the person doing the job that you're talking to, who doesn't know what they're doing. They're holding on, you know, by the skin of their teeth, hoping nobody notices. They don't understand 45% of their job, and everybody then the ass covering starts, and then other people realize, uh oh, if they figure out she doesn't know her job, then they're gonna figure out, I don't know my job. And then, you know what I mean, like it just, I don't know, man, all this stuff always feels like, it always feels to me, like people who are not, they're not well oriented. It goes back to education, they don't know what they're supposed to be doing. And if they do know, sometimes they're not motivated enough, or they're burned out, or whatever else, and they don't end up doing everything they're supposed to do, plus companies. I mean, listen, this is you can make the argument the other way, these schools, and you know, they've got these teachers and administrators doing more than probably their fair share of work, and you know, there's a lot of work, and it gets thrown on everybody, and I don't know, it just I like, it's funny, because you feel like you're talking about a 504 plan, but at the same time, I feel like you're talking about everything. Does that not feel that way to you? Like, most things end up going like this, yeah,
Jay 1:04:55
because it the 504 plans. Do it the show. Parks disposal, does it so it well,
Scott Benner 1:05:02
I'm talking about beyond that. I'm talking about the lady at the register doesn't know how to make discount card works at the grocery store. Like, if you don't know, you know, like, then, then who does
Jay 1:05:11
if that's right, it goes, it goes back to take this back to your trainer. Take this back to your educator.
Scott Benner 1:05:20
What I keep thinking though, Jay, is that if I keep taking it back to the person who's like, if I keep doing that, do I end up in a room that nobody's in? Is that too metaphysical? Like, if we keep going back to the person who was supposed to tell me how to do this, and then I go to the next person, I said, Well, who told you this? And I go to the next person like, it feels like it's a nebulous thing. There's not a person in charge. There's these ideas. I'm going to be unclear about this, but there's these institutional ideas that we follow, and there's norms that we've heard. Because the last guy that had the job told me this, the last girl that had the job told me that. So I this is how I do it. I don't really know why I'm doing it. I just know I'm supposed to, it's Tuesday and I'm supposed to push this button, so I push it on Tuesdays, then you realize that it's completely possible that all of these rules came from places and times and people who don't exist anymore, and so nobody really knows why they're doing anything, which is why sometimes things need to be looked at with fresh eyes from the people who are involved now and put together something cohesive that everybody can agree that they can do and that's protecting the people it's supposed to be protecting
Jay 1:06:25
you have said it well, and looking at the other side of we've always done it this way. Oh, it's the worst. Yeah, yeah. This
Scott Benner 1:06:37
is how it's always been. This is what we do. Listen. Forget all this with the 504 care plan. Most of these people listening. Your health care is based on that too. Oh,
Jay 1:06:45
it is health care. Health care is, is it? And you need to be taught, and you need to be taught about your insulin, you need to be taught about your administration. You need to be taught about your profiles. You need to have protocols for half a dozen different things. I mean, yeah, it's timeless. I think this is the stuff
Scott Benner 1:07:07
that when they talk about, you know, there are things in the world that we just do to keep people busy. That's what a lot of this is. I mean, anyone who's ever signed a mortgage, I mean, my God, you'll spend a half an hour, 45 minutes in a room with somebody signing documents
Jay 1:07:22
and ask them. Reduce this to 25 words,
Scott Benner 1:07:25
what is this? You know, what is this? I'm signing here. Oh, it's the blah, blah. No one knows. No one knows anything. I just it happens constantly. No matter what you're doing. People like, Oh, you just have to sign that. Or, I had this one company, they're like, we want to, like, direct deposit. You know, when you send us an invoice, we'd like to just deposit it directly into an account. And I said, Yeah, that's fine, whatever. Here's, you know, here's the information that you need. And they came back and they said, Actually, we need you to take this document to your bank and have it certified by the bank manager and the and I responded back, and I went, No. I said, No, period. Send me a paper check. And that was the end of it. Like I couldn't believe what they wanted. It was ridiculous,
Jay 1:08:04
you're right. And there's one more that from education, the one thing to keep in mind is the mind can only absorb that which the tail can endure. So if a person's listening, they they need to look at how much information can a person absorb in what in one session?
Scott Benner 1:08:27
I Yeah, and the answer is not a lot, right? The answer is not a lot. I'm not saying I'm like, magical, and I could do it. I'm sure if you put me in one of those jobs and hit me for an hour with information, I'd walk out of there like, Oh God, I don't, I don't, okay. And then, you know, it's not like you, by the way, get to go back to your desk then and spend 15 or 20 minutes going over these ideas, and, you know, looking at your notes and and saying to yourself, Okay, this is you get done that meeting. You run up, you run back and go into another meeting. People are meeting all day long. I don't know how anything is getting finished. It's
Jay 1:09:01
time sensitive, any way you want to, want to do it like Jay. You're used
Scott Benner 1:09:04
to working in a world that's on paper, but now I'm telling you, nowadays, my wife will someday start working at five o'clock in the afternoon, and I'll be like, what'd you do all day? She goes, I had six meetings. So she gets up at six, she gets dressed, she sits at a computer. By seven o'clock, she's in a meeting. I see her when she runs to the refrigerator to grab a cold drink or runs to the bathroom, back and forth, back and forth, back and forth, meetings, meetings, meetings, meetings. Then at the end of the day, she's exhausted from absorbing all this information, and now she's like, okay, now I have to go do my job, and you work till 11 o'clock, and you sleep for five hours, and you get up and do it again, and then we're over here, like, you know, in the real world, getting the short end of the stick at your 504, you know, with your with your school or something, and you're like, do a better job. But then that cascading, I mean, the thing we've been talking about for the last hour, like, that cascading problem of, why is this really not happening, opens up, and the answer is, there's, like, 1000 And different reasons why this and other things aren't happening. And, you know, I don't know how to stop the world long enough for everybody to reassess and and start over again. So I don't know, like, like you said grassroots is, like, somebody's got to get pissed off and make it happen. But the truth is, is that even those people are going to get tired. You know what I mean? Like, I remember one of the diabetes groups that was really popular for a while and kind of fell off. Now, can't think of which one it was, but they had this, like, great idea, we are going to contact every pediatrician in the country and tell them the importance of checking with a finger stick when you see these flu like symptoms, because you're going to find people who are heading into or in DKA, and it's going to look like the flu, right? And we're going to save these kids from not being diagnosed by type one diabetes. A pretty big organization. I thought, Man, this is a this a good use of their effort, you know what I mean. And they started, and they were going, and then it got hard, and then they lost some of their support from, you know, people who were, you know, volunteering, and the next thing, you know, just fizzles out and it's gone. So I don't know, man, is this just how things work? Is this as good as it gets? In over my head on that, am I bumming you out? Jack?
Jay 1:11:16
Not that you're bumming me out, but, but I think that, I think the my statement about the mind can only absorb that which the tail can endure. I'm going to have to
Scott Benner 1:11:25
go back to that one. Yeah.
Jay 1:11:29
So look at look at the chat and see what we got.
Scott Benner 1:11:33
So what I would say to people, if they've listened to this entire thing, because we've been going a while, and I need to wrap up with you, but like, what I would tell them is, is that you should expect pushback from people who, at sometimes might seem like they're villains in your story, but they're probably not. They're probably either lost or confused or doing what they think they're supposed to be doing. This is where you have to branch off, find a quiet space and decide this is the thing that I have to get worked out, and then you have to put that effort into that. And if it's not something you have the space for, then you might have to say, All right, well, I guess I gotta do what they're saying, or I'm gonna fight or, you know, you, but you gotta figure out what this is. And I think if you're looking for an entity, whether it be the school or an org or somebody else, to come in and stand up for you, I mean, that's not as easy as said. Is done. You can probably get legal representation through American Diabetes Association that they at least they might know somebody to like, point you in the direction of right? But then you got to decide that that's what you're going to do. My point is that life's full of roadblocks, and just because diabetes sucks doesn't mean you're not going to find some here too. Amen. Look like, yeah, those roadblocks look like all kinds of different things, paperwork, misunderstanding, people, institutions that are not trying hard enough, institutions that aren't even doing they don't even know what it is they should be doing. So, man, I don't know this bump say out of me. Jay,
Jay 1:12:58
Hey, aren't you retired?
Scott Benner 1:12:59
Why don't you stop thinking someone else's problem.
Jay 1:13:04
Why don't, why don't we wrap this one up? Then I think, I think we've, we've, we've beat this dog, beat the fur off the dog, every way we can. Yeah, it's really
Scott Benner 1:13:12
enjoyable speaking to you. I love watching you online, because if I can, it's interesting watching a person from another generation say, I see this is how people are talking now, and I'm going to be involved in it, but it's really cool that you're there. You know what?
Jay 1:13:26
I mean? Hey, thanks. Thank you for having me on the show. No,
Scott Benner 1:13:30
it's a pleasure. Absolutely. Hold on one second for me. Okay.
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want rob you.
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