#1278 Twist My Brain
Julie's son has type 1 diabetes and ADHD.
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Scott Benner 0:00
Hello friends, and welcome to Episode 1278 of the juicebox podcast.
On today's show, I'll be speaking with Julie. She's the mother of three, and one of her children has type one diabetes. And ADHD, please don't forget that nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin 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. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's juicebox at checkout to save 40% at cozy Earth com, if you're looking for community around type one diabetes. Check out the juicebox podcast, private Facebook group. Juicebox podcast, type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out juicebox podcast, type one diabetes on Facebook.
The episode you're listening to is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, 888-721-1514, you can get your diabetes testing supplies the same way we do from us med. This episode of The juicebox podcast is sponsored by Eversense. The Eversense CGM is more convenient, requiring only one sensor every six months. It offers more flexibility with its easy on, easy off, smart transmitter, and allows you to take a break when needed. Ever since cgm.com/juice box, this show is sponsored today by the glucagon that my daughter carries. G vo hypo pen. Find out more at gvoke, glucagon.com, forward slash juice box.
Julie 2:20
My name is Julie. I'm the mother of an 11 year old type one son, and I work as a pharmacist in critical care for a living 11
Scott Benner 2:29
year old son. That's type one. Your critical care pharmacist?
Julie 2:36
Yes, I am. What is that? Pharmacist in hospitals, people don't seem to realize but they're a bit everywhere, kind of hiding in the background. Obviously, there are some that are in the dispensary looking at the orders that come in, dispensing them as but the more it goes, the more the profession is becoming deeply involved in the teams on the units. And so a critical care pharmacist is a pharmacist that is in with the ICU team, rounding and a bit like a consultant, but part of the team where you try to customize, adjust, make sure the meds are ordered right and safely for everybody.
Scott Benner 3:16
Did you happen to hear the first episode of the cold wind series? I did, yeah, and that person was a clinical pharmacist. Am I right? Ah, it's a pharmacist in a hospital, bunch of beds. She said they were involved in some of the care stuff. Maybe something similar, perhaps,
Julie 3:33
or I thought I did, or maybe I heard the brainstorm. I don't know if I heard that one. Oh,
Scott Benner 3:38
okay, well, I got to speak to that person. That person spoke anonymously because they were being very honest about the hospital they worked in and some of the things they saw. Do you need to be anonymous or? No?
Julie 3:50
No, because my, my goal is not to be a whistleblower. Okay, it's more to give the reality of the practice. Nice.
Scott Benner 3:57
I would love to hear about it, and you're just so I don't wonder the whole time. Are you French Canadian? I am. You sound very French Canadian. That's
Julie 4:05
why I asked. I know. And the more tired, the more it comes across, really.
Scott Benner 4:08
Oh, that's interesting. Are you tired now?
Julie 4:10
I am. How come? Because I do too much with not enough time and and take care of of my type one, but also of my two other boys. And
Scott Benner 4:21
yeah, I know it's a it's a lot. I think it's a bit of a circumstance of how great life is right now and how many things there are to do and accomplish and see. It makes you feel like there just isn't it really does feel like there's not enough time. I woke up at 430 this morning just to go to the bathroom. Open my eyes. I feel the bathroom. Went to the bathroom, I walked out, I went, what about this? I checked on something, and I went, looked at something else, and then before I knew it, I didn't go back to sleep, and I haven't been bored or slow and it that was eight hours ago. Now, you and I are recording at noon my time. I still have 1000 things to do today. I'm excited about every one of them. So. So I know how you feel. But anyway, you're here to Well, I guess you know what. First, let's find out a little bit about your son with type one. How old was he when he was diagnosed?
Julie 5:09
He was six years old. We're just past the five year mark. Okay, how is it going? We're not achieving the same kind of goals that you and your daughter are achieving, but it's going as good as it can. My son also has ADHD, which makes life a little bit more difficult. So we need to find ways to find compromise between what he can do and the goals that we would love to
Scott Benner 5:35
achieve. What are some of the things that stand in the way of of the goals?
Julie 5:39
The first thing is, is inability to keep his eyes on his blood sugar. ADHD, people usually need a short term reward that they care about to get themselves going. Diabetes is a long run right? So it's not very easy for him to actually look at his blood sugar and even to react to alarms when Dexcom is screaming at him, because it's less interesting than what else he was doing at the time where the alarm came. Does
Scott Benner 6:09
every person not need a reward for things to be interested in it?
Julie 6:14
Yes, but if you're not able to foresee the future and so try to aim for long term goals. Okay, diabetes becomes not interesting quite fast. I see, I guess he's never had any really bad lows that required, like glucagon or anything like that. So for him, the idea of severe hypo is still very elusive, like, it's not something that's tangible. For him, yeah,
Scott Benner 6:38
I understand. So he manages with what I mean, you're in Canada, they give him a stick and a rock, and you pour the insulin through a leaf.
Julie 6:46
Well, when we started, we were given umog and NPH, because there's no nurses in school in Alberta, and so we needed to find a way to cover lunch without having a poke at lunch, which works, not at all, but that was the first, the first year of therapy, because of the setup that we have, and because, like, I was offered a pump after three months, but I was not ready with what it implied I needed time to process, because here with no nurses, that means that if something wrong happens With the pump. I have to drop everything at my work and then go help him out, right? Because at the time, he was six, right? Well, no, he was six the first year, and then he was seven when we started the pump. The
Scott Benner 7:32
pump, it's not in every province, correct, but there are some where there are just no school nurses. So this whole NPH thing is how they get around that.
Julie 7:39
Yes, that's, that's the practicality of it without school nurses, right?
Scott Benner 7:44
Okay, so when a pump could have helped, you weren't ready. What kept you from being ready? Do you recall,
Julie 7:49
as I said, for me, it was the idea that, because you know, like you know, that if the pump stops working, if that's tripped off, something happened,
Scott Benner 7:57
I'm sorry, just the fear that if something happened at school, you'd have to leave and go there.
Julie 8:02
Yes, because I have a job, because I don't know how my boss, how understanding my bosses are going to be, gotcha, it was just very heavy on my back. Yeah, a few months later, I was ready, but then we were on vacation when they were giving the pump classes, and so it took, in the end, 11 months to be able to access the pump. I
Scott Benner 8:18
see, I just kind of imagined that there would be other reasons, but that reason was strong enough for you that it just stopped the conversation. Yes, yeah, okay. That being
Julie 8:27
said, he was getting to it was very sensitive initially, and so you would end up like above what Dexcom measures every single evening. And I couldn't exactly correct him, because it was at a time where I was hoping to sleep a bit, and you would go from like here is 18 to four, so something like 350, to 70 with half a unit of insulin, which was the smallest measurement that the pen was allowing.
Scott Benner 8:55
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Julie 10:16
in total, 11, nine and seven. Gotcha. Okay,
Scott Benner 10:19
so you would see that high blood sugar, and know, if I make a correction, even a small correction, to this, it very well may be a low in the middle of the night, and I have to sleep or this whole thing's gonna fall apart. Yes, yeah, that's a tough decision, right?
Julie 10:34
It was awful, yeah, but I didn't have the confidence to just because I could have pulled the syringe and done it myself, but I was just not there. I was kind of frozen. Yeah,
Scott Benner 10:46
yeah. Can you talk a little bit about the, I'm assuming, guilt that comes with letting the blood sugar stay high?
Julie 10:53
Oh, obviously, like that guilt is even today, that guilt is is awful. Like I don't need to to be convinced of what I need to do to get my son where he needs to go. At my work, I see the people that have all the complications by their 30s and 40s. Yeah, no, I see all the people that that chose to not take care of themselves or were pushed into it because of circumstances. I play as hard as I can, but I guess I'm limited with what we can achieve with my son, with the fact that there's literally nobody looking out for him at school.
Scott Benner 11:33
So there's nobody at school to help. He's not able to focus on himself, no, and there's only so much you can do your spread thin enough already,
Julie 11:44
yeah, I basically go in from a distance, right, right? I
Scott Benner 11:48
would imagine then your focus, when you have free time to think, is about how to get him into a place where he can help himself better. Is that? Right?
Julie 11:55
Yeah, twist my brain backwards to try to find how you can manage or how he can take more on himself, or give him more freedom, because now he's a pre teen, and he doesn't necessarily want to eat on a schedule, so we give him tools, and I try to emphasize because with ADHD, having visual or physical reminders is key to be able to keep remembering like the short term necessary short but the working memory is faulty to certain extent, and so being able to have like, alarms on his phone or a cheat sheet in his lunch, or even, like I use masking tape that I put on every single container and every little thing in his lunch, so that, in the worst case, if he grabs the thing, he's gonna see the green tape and it will remind him that he needs to bolus. And how much does that work? For the most part, it works okay. Sometimes he forgets to do some things or but it's as good as it can be.
Scott Benner 12:55
Do you have the opportunity like to text at lunchtime?
Julie 13:00
When he was younger, the teachers were open to have Dexcom on their phone and to have me text them. The past couple of years in grade five and six, that kind of went away. The teachers don't want to give their private number. Some of them told me, I don't want to have my cell phone in my classroom. So even, even if I write them a 15 page care plan like I'm supposed to they're not able to apply any of
Scott Benner 13:23
it. Think that's an excuse from them. Or do you think they really don't want I mean, do you know three people that don't have their phone with them?
Julie 13:30
I don't know. I think the grade five teacher really didn't want to have his phone in his classroom. The grade six teacher, well, she said that she would borrow the school's phone for like, a month or two, see how things go. And then, by then, we were already set up to just function, him and me and so. And in the end, I don't have all I also don't have anybody that's like, fighting with me when I want to wing it, no, like when I just want to follow and go with the flow,
Scott Benner 13:54
just do what you want to do. Yeah? That part's nice not to have another person involved in the conversation. Yeah? Yeah. I don't know anything about ADHD, really, but is it a thing that can be medicated? Or, like, how do you attack the bigger problem? Yes,
Julie 14:10
of what I understand, the vast majority of patients will do much better with medication, mostly stimulants like the Ritalin and Dexcom of this world, and all those other formulation of the same and some of them will be able to it's basically a delay in your executive functioning, development in your brain. So you're you're not at the level where the rest of your body is. And whether or not that delay will catch up, or it will, it will always be behind you, don't know. And so the way to palate for that is to give medications. There's a set, mostly it's stimulants, but there's a couple other classes of meds that you can give as well.
Scott Benner 14:52
Are you qualified to describe that to me? How does that work? If somebody is going so fast that they can't cause. Trait. Why does speeding them up help them slow down? It
Julie 15:03
doesn't speed them up. It basically keeps the if I remember, well, it keeps the neurotransmitters in the window longer interesting, so that the study effect lasts a bit longer, and it gives them an ability to focus.
Scott Benner 15:18
Are there diminishing return to that medication, like, can it? Does the efficacy go as time passes?
Julie 15:24
The main two things that I would see with those meds is they are appetite suppressants, or at least the stimulants. I'm not talking about the other two classes, yeah. But the main the stimulants are appetite suppressants, so you end up with people that have less appetite, and then you need to monitor their weights, especially with children, to make sure that they're not losing weight over time. Some kids have to stop those meds because they cannot find a way to keep up with the weight I
Scott Benner 15:50
see. Does anyone do you think anyone remembers the episode of family ties with Michael J Fox, where his Sister Justine Bateman, who is, by the way, Jason Bateman's sister, her character, is using one of those drugs as a diet drug, and then he gets a hold of it during test time and uses it as like speed to like study for fun. Does anyone do you remember? Did you ever watch family ties? Being
Julie 16:15
French Canadian, my cultural background is, is very different. Family Ties is not something that I used to watch. I vaguely know about it,
Scott Benner 16:22
but, oh, you do Okay, yeah. I hope people right now are like, I remember that episode. Does everyone remember his friend's name, the dorky guy? Skippy? That's enough of this. Let's move on. Julie. Okay, so does your son use the medication?
Julie 16:35
He does. Yeah, he's using five Vance for now, and
Scott Benner 16:39
it's doing something, it not enough. Oh
Julie 16:42
yeah, himself and and us can tell. Because the problem is, it's a matter that you need to take early in the morning so that it can wear off by the end of the day and you can go to bed. Okay. Otherwise, people have insomnia, and so by eight, nine o'clock in the morning, if he hasn't taken it, everybody knows.
Scott Benner 16:59
Everybody knows, because he's scattered, yes, yeah,
Julie 17:03
like, yeah, and even him. I usually get a text by eight, nine in the morning, saying, Hey, Mom, I think I forgot my meds. Gotcha. So it works better for him anymore. It works better for us. I see there's less impulsivity. There's more focus towards activities that he likes and activities that he doesn't like. Does
Scott Benner 17:19
anyone else in your family have this like Do you have any other experience with it?
Julie 17:23
It's a highly genetic disorder. For the vast majority of people with it, other than some head traumas, it's a genetic disorder. And there's a brother of my mom that was diagnosed at 60 with it a few years ago at 60, at 60, but he struggled his whole life. Yeah, and now he has an explanation. He just thought that he was dumber than the rest of us. And in the end, he was not. He was having issues with focusing and about that functioning. How
Scott Benner 17:52
does that get diagnosed? It's,
Julie 17:57
it's kind of a clinical diagnosis, like, there's not like a blood test or anything like that. You can have a full evaluation with, like, either a psychologist or psychiatrist, or we went kind of the short way, like there's some questionnaires, like one page questionnaire that are asking you if you if you do certain things, like never, sometimes, often, all the time. And you have to show that it's across settings, meaning that it's not just a home problem, it's a home problem, a school problem, a daycare problem, a work place problem, interesting, and so it gets diagnosed based on your scores, or you, as I said, the evaluation that the professionals can do, you can try meds. Most people will see a benefit with stimulants, because obviously it, like some people use it as drugs to do exams, right? Because it allows you to focus intensely on something, but if you have a deficit, well, it brings you closer to normal about that.
Scott Benner 18:52
That's really something that's a lifelong thing. Or do you come off it once in a while to see if things have changed?
Julie 18:58
As I said, like there's a small portion of people, I think that by adulthood, have caught up, but the vast majority of people still need some help. Okay, later in life, either they learn strategies to cope and or they use meds.
Scott Benner 19:14
My last question is, do you know what the half life is? The half life of the man? It only stays in your system for 24 hours, right? Like so if you stop taking it, it's
Julie 19:24
less than that. It's less than that because it needs to wear off by the end of the day, otherwise you don't sleep at night.
Scott Benner 19:29
So you it's the thing you would see a benefit from immediately if you took it. Interesting. Yes, okay, cool. All right, that's very interesting. I appreciate you sharing that with me. You wanted to come on the show, though, more to talk about, like your job function and and what you do. So tell me about it.
Julie 19:46
So, yeah, so I've been, uh,
Scott Benner 19:50
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Julie 22:35
box a critical care pharmacist for 17 years now, and we see all kinds of it's not a unit that has only obviously diabetics. It's very a mixed bag of surgical, medical, trauma, transplant, all kinds of people. I don't know where to start. I totally understand the frustration of the patients and their families when they feel like the medical team doesn't understand type one, and I kind of agree that they do, and they also have for a lot of them, at least in ICU, they don't have much interest for it, because there's so much to learn. ICU is a mandatory rotation for most residencies, I would think, and it's a world that of its own. Like, it's a world where all the things that you care about in the outpatient setting becomes not obsolete, but like, we'll get you out of here, and then we can talk about your blood pressure and your cholesterol and your diabetes and all that stuff. I'm not quite sure how they get taught in school, and it's the same for me, you know, like I talk with my colleagues, and it's the same, I try to to explain to them how things work and that the day you you change how you feed the patient. Well, obviously you need to look and change the insulin to go with it. But there's so many variables. No, like people are often times infected or insanely stressed out from the trauma that they are going through, and from the disease that makes them so sick they need to be an ICU and the ventilator that makes them breathe and or the physio that they they try to make you do, to keep you active, not lose so much muscle mass and keep your brain in a better place that It's really, really hard to adjust any of this until you're stable. So
Scott Benner 24:24
if the people that you're working with don't seem to understand and maybe don't have a ton of interest in it, you do now, because your son's been diagnosed, but prior to his diagnosis, working in a hospital setting, and what was your understanding?
Julie 24:37
I was exactly where I am now, and I was exactly like the rest of them, not because we don't care about the patient, but it's just sometimes it looks if even to us, it looks like, oh, it's diabetes. Well, to them, in that setting, it's even more, oh, it's diabetes. It becomes easier oftentimes, to use an insulin infusion, because then you. You, you can tweak it as you go, and then when the patient is more stable, we can go towards like, B bit the basal, bolus, insulin, as long as you have some degree of stability
Scott Benner 25:11
like so it feels like to me a little bit like you want, you want me to understand that you don't think that the lack of knowledge is, I don't know what the right word is. It's not malicious, right? Like, but
Julie 25:26
no, diabetes just looks more random to them, okay, than it does to me. Probably, how? But even then, even even I take guesses on how to adjust things, no, like, I need to have the confidence to just say, let's try this and see what happens. Even
Scott Benner 25:44
though there's a mathematical equation that can help you set up a person's basal insulin, insulin to carb ratio, insulin sensitivity. It's based on their weight. You know, it's a it's a starting place. It's based on their weight, their amount of activity. That's not random. It's just a thing you need to learn before you you know what I mean?
Julie 26:02
Yeah, right. But in the acute setting, all those things go out the window. No once you have a massive infection, or you have a trauma, or you you're sick from whatever you're sick of, but that requires you to be in ICU, all those things change, even if you knew exactly their parameters, those parameters have changed significantly.
Scott Benner 26:24
No one's going to try to fix it right? Like there's no there's no world where you come in in that acute situation and you know, they say to you, Hey, how's your blood sugar? And you go, my a one sees nine and a half. It's not great. They don't stop and go, Okay, well, we'll fix your insulin settings so that we can get it closer to being correct for this day. Like nobody really does that, they go, Okay, no,
Julie 26:46
obviously, but, but they just put you on an insulin infusion initially, probably with a target that's a lot more lax than what you would target at home. That being said, the patients that come in with anyone at C 10, you don't hope to fix them fully by the time they leave the hospital. Obviously they have bigger issues. Yeah,
Scott Benner 27:04
but see, that's funny, because when you say because when I hear people say, it's not just you, and I'm not arguing with you, I'm interested in the conversation. But when people say no, obviously they don't fix that, I don't understand that. So if I came in, for example, and I had recently, I don't know, I have a big laceration on my leg, and it's emergency, and I come in and they say, do you take any medication? And I said, Oh, yeah, I do. I take a heart medication for an arrhythmia, but I know I don't take the right amount with the hospital. Say, Well, how much you taking? And then call in a cardiologist and have the cardiologist come and go, Hey, you know what? They're right. They're not taking the right amount. This isn't right. Will change there. Wouldn't that happen?
Julie 27:42
It would happen. You hope by the time they go home, that being said, a lot of those things are offset by the fact that when you're really sick, often times you need meds to keep your blood pressure up, and all those meds are stopped because they have the potential to make your blood pressure even lower. So I said all the stuff that you do chronically is kind of on pause. The stuff that we need to restart right away, right away, we will, but there's a lot of things that become secondary to you surviving this. Is
Scott Benner 28:10
it not true that most of the reasons people find themselves in emergent situations is because the stuff that they're supposed to be doing chronically they don't do correctly some of it, yes, yeah, but it still doesn't get addressed, though.
Julie 28:23
It will get addressed probably closer to discharge, and it needs to be addressed by the family dog after that, because, as said, when you're not in your home setting, some things are going to behave differently, no, if you're if you're stressed because you're in hospital, maybe your blood pressure will be higher than it would be sitting at home in your cozy environment that you know, sure, and so if we adjust your blood pressure meds to meet that target on the ward, then you go home and you go hypotensive, and all those like blood pressure is is one example. But like a lot of things, flip upside down when you're in the hospital, just because you're you know you're sick, your body knows you're sick, and you don't react the way you would expect to. Plus it for blood sugar, they are still nobody has a Dexcom in a hospital, right? Nobody has a as a libre everybody's doing like, four times a day pokes, plus when you're worried. But in ICU, when a patient is sedated and intubated. Don't necessarily tell you that they feel like, Oh yeah, I'm starting to have their shakes, and so you need to play it very safe, because you don't want them hypo All right. I
Scott Benner 29:29
mean, I understand it's just comes down to the fact, I think of a of the layman's expectation, the hospital is the place where I go to see medical people. If there's something wrong with me, they're going to address it. But in more honesty, a hospital is a place for procedures and for emergencies. It's not really to get
Julie 29:49
your health in order, or at least it can be a start of something, but it needs to continue in the community afterwards.
Scott Benner 29:55
Yeah. So what falls apart after that? The patients go
Julie 29:59
back. To their own habits. That's one thing the family dogs. Some, some are very good at it, and some maybe not so much, because they deal for with a lot of things. Like family dogs have a job that is very difficult, in the sense that they need to be able to flag for a million different things that could go wrong. Yeah, they're probably more cautious than aggressive by fear of of causing, as I said, hypoglycemia, hypotension, like stuff that in the immediate moment could be risky, because if you have somebody that you know, if you have, like a 75 year old woman that has hypotension or low blood sugar, they might fall down the stairs, and then they become somebody who will probably not make it in the end, because then they broke both in their body, or they became paraplegic. Or, you know, it's a big it starts a spiral that doesn't necessarily lead where you want to go. So I would assume that that's part of discussion, like the reality of where people live and what they do and the decisions that they make for themselves.
Scott Benner 31:06
Does the phrase pass the buck translate for you?
Julie 31:09
Yeah, pass the puck to the GP. Yeah, for sure,
Scott Benner 31:12
the buck. But I love that you said puck and you're Canadian, pass the buck. It's a, it's a, just a term that means, make it someone else's problem, pass it on to the next person. And it just, it feels like that. It feels like the patient is saying, Well, the doctor should tell me what to do, and the general practitioner says, Well, I told them what to do, and they don't do it. And then you get to a hospital setting where they go, that's not really our job. You know, that's somebody else's job. So there's three people involved in this trifecta, and not one of them steps forward and says, Hey, you know what? I'm gonna make up the deficiencies of the other two here. I'll fix this. That's not the case. Everyone just passes it back and forth to each other, and that sounds like I've had a lot of these conversations this year, Julie and over and over again, that's what I'm hearing. I'm hearing that the doctor didn't tell me the system's not set up for this. If you had better insurance, I don't have the time to sit with patients like that. They're all, I mean, reasons, but they sound like excuses. If you're at home, you know, if you're at home with a 10, a one sitting, your life's being shortened. They're excuses, right? They're not reasons. I mean, not unlike a lot of societal conversations, this is as far as this conversation goes, because there's never anybody in any scenario willing to say, hey, you know what? You're right. Throw that on me. I'm going to take care of it. There's always for good reasons. I'm certainly not coming down on you, but you said earlier, your son's blood sugars stay higher than you want them to be because you have limited resources too, right? So, you know, I keep having these conversations looking for an answer, but the answer over and over again, seems like you know, this is it. We'll just like, see where the chips fall. And some people get lucky, and some people have brains that lead them to understanding their diabetes better, or the tools or the, you know, what have you, the education, and they actually follow through with it. And some people don't, and those people are lost, and there's nothing we can do for them. Can that be the truth?
Julie 33:20
A certain extent, you're probably right, yeah, and not every professional is a go getter same way as like, there's a lot of times, I guess, over time, I understood very well that a lot of things, it doesn't matter who does it, as long as it gets done and I end up doing a lot of job where I work, that is not exactly my job. Oh yeah, hopefully, oh yeah. But some people are going to be like, I will fix problems, and some people are going to be shoveling in the the next person's turf, yeah. And in the end, yeah, that definitely happens. Not everybody, as I said, is a is a, let's get this fixed.
Scott Benner 34:01
The way I always think about it is that it sometimes seems to me that people work harder at not doing their job than it would have taken for them to do their job. You know, there's so much effort put into not doing something. It's fascinating. It's funny. Like to give you a personal perspective, I guess that's not my personality, so it's confusing to me. I think that people might think, oh, Scott's trying to get to the bottom of how this happens so we can fix it. I'm just confused by it like I don't imagine it's fixable. I'm just baffled by a person who has a medical issue that says it's alright if this kills me. I'm baffled by a doctor who looks at somebody who's on their way out and goes, they should have tried harder, you know what I mean? Like, I don't understand that at all, but my brain can't make sense of any of that, and so I keep having these conversations, hoping that someone's going to pop up at the end and go, You know what we should do, or that this big idea is going to jump up into my head. But so far, the best idea I come up with is make all this information available on a podcast, and the people who want it, who can find it, and the rest of them, I guess, won't, but at least they had a chance.
Julie 35:11
But this is why podcast is so valuable. Yeah, I know, but it's not but it's gonna be valuable for the people who are go getters that want actually to do something about
Scott Benner 35:22
it, or even are lucky enough to a trip over it, because there are, oftentimes, people are go getters, but the help they find isn't valuable to them, but they stick to it because they think they found it, and then they have middling results, and they say things like, oh, diabetes is so hard. I mean, I have a seven and a half a one, and say it's the best I can do. You know, like, like, that kind of stuff, when they just don't have the other ideas. It seems like to me, as crazy as it might sound, because I'm the one that makes the podcast, and I do know how valuable it is to people, because I get to see the feedback, but
this shouldn't be the answer.
You know, I'm saying like, this should not be the answer. And yet I understand that it is sometimes because I had a conversation with a like a lifelong type one just this morning, person I hadn't spoken to in such a long time, and they were telling me about their burned out and they just don't take care of themselves. And and I was like, Well, you know, what is it you're not doing and it's like bolus thing for food. I said, why not? I just think, can't bring myself to do it, and I didn't even know what to say. I said, you should probably get a therapist. Because what I wanted to say was, just do it. I mean, who cares if you want to do it or not? This is an obvious one. It feels like they sunk to the bottom of a four foot pool and can't go to the trouble of standing up and that they're like, No, you don't understand. Like I'm depressed, or I just can't bring myself to do it, or I'm so burned out I don't understand that's the thing Julia. I don't get I don't under I don't get so burned out that phrase, I don't understand it. I don't have diabetes, but I've lived a pretty horrible life. At times, I've been flat broke. I've been, you know, destitute as a child, I don't understand you don't get up in the morning and fight. That's the part that I can't I can never wrap my head around I guess so. Anyway, it's depressing joy,
Julie 37:18
but it's a reality like you and I are more intrinsically motivated than the average people. Probably
Scott Benner 37:27
I don't even know. Like, I can't even tell if that's true. Like, I don't want to take credit for something that feels so human to me. But I guess the same would go to, you know, finding fault with somebody that's, you know, experiencing something that's so human to them. Like, maybe a lack of motivation is just their is their base setting, you know, which I don't know that that makes it bad. It just makes it who they are. And if you give that person a life without diabetes, they're probably okay, but you drop diabetes on top of them, and now that's a person who's going to struggle more than the next person does, like, you know, when Jenny's on the show and she talks about her care. It all just it feels so easy, but I try to remember it's easy because that's her personality.
Julie 38:09
Yeah, you don't need to tell her that she needs to do it. She just knows and does it. Yeah, but for a lot of people, it feels like so much effort.
Scott Benner 38:18
If we translate that back into the medicine. Are there many more people who lack the motivation to make a difference than there are those who want to make a difference?
Julie 38:28
Um, what do you intersect more these days, post covid With, with all the trouble with mental health, there's a lot of people that are not able to get themselves out of the hole that they dug or not? Yeah, that's a heavy burden for the system. No, yeah. Because even, even if you you fix them from one standpoint, like you take months and months of rehab and all that stuff, it doesn't mean that they're gonna get to the end and not do exactly what they did in the first place.
Scott Benner 38:58
And so those people are, I guess it's a burden to the system because they're patients, but also I'm going to assume a number of them are actually employees, too, who are who are experiencing these same things. Now, if everyone's a little more depressed than they used to be, there's going to be more burden and fewer people to help you dig out of it. Yes,
Julie 39:19
and like, if I look where I work, covid was extremely difficult. Like anywhere else, we've lost a lot of nurses that went for better quality of life jobs that went for some of them probably are on sick leave, and I just don't realize that they're on sick leave, but a lot of them have left to go for a job that's not so emotionally taxing. So the people that come in to fill the gap are new. They're not, they're not the people that have the experience of the very heavy ICU that takes the people that don't fit anywhere else, right? And so, yeah, you end up with people that are very competent nurses, but it takes time for them to get on top of the skills you need to. Keep people alive and those kind of situations, right?
Scott Benner 40:02
Yeah, so there's a training period that's going on, and possibly you've hired people who, in the past you would have overlooked, because they wouldn't have been what you wanted for the position. But now you might have to take them, because that's what that's what exists,
Julie 40:15
probably, and that exists also in hospital pharmacy, in the sense that there's extra school, and you can do past your your basic pharmacy degree, typical hospital pharmacy, but there's just a few of them. And so those people, when you hire them, they're like gold stars, and they they can pick up and they already know what they want to do, and they're very proactive. But then you end up having to hire some people who have been working in the community for a number of years, or have been just finishing their degree, and those people to get them up to speed in a tertiary center with like, very specialized area and very sick people, it takes time, and it's not like you can give them a pill and they suddenly know everything, like everybody in that place learns new things Every day, even after 25 years of working there, I wonder
Scott Benner 41:03
how much AI, for example, will help in the future with medicine and with the patient side and the follow up like I wonder if some of these people could be caught by their phone literally telling them, you know,
Julie 41:21
don't forget, and refilled your meds for the past two and a half months. Yeah, right, I could definitely see that. And there's already like, not exactly AI, because it doesn't think by itself. But there's already like, Alberta, and that exists everywhere in other settings too. Yeah, we bought a big software that replaced everything a few years back. And that software makes connections or allows for to get to documentation from the past, so much more easily than paper charting. And it flags for interactions, it flags for odd doses of of some drugs, it flags for a lot of different things. And so that allows to have the prescriber not necessarily know all that stuff, but gets flagged, sometimes flagged too much and flagged for stuff that's insignificant, but yeah, the computer is helping out to to have to catch more potential mistakes or dangerous doses?
Scott Benner 42:26
Yeah, I think it has to be a combination. I really think that. I mean, I'm doing something right now. I don't think I've said it out loud on the podcast, yeah, but I'm behind the scenes. I'm busy cataloging the podcast as audio files transcribed by AI so that you can, one day ask an AI bot a question about type one diabetes, and it will access the entirety of the lifetime of the podcast to find the answer. That's wonderful. So yeah, try to imagine the internet, but it's just for type one diabetes. And this, you know, this AI bot can literally take your question and go find all the answers and give you an amalgam of that answer. And I'm, I'm just doing it, you know, I'm in the beginning process of it, and I'm very scared that at some point it's going to become a financial burden that I can't carry to make it happen, but so far, it's something I'm able to do behind the scenes. It's tough when you live on ads like you know, it's not a thing I can sell ads on or anything like that. But I want to try to leave it behind, because I'm very scared that everyone's conversations and thoughts, you know, that have been poured into this now to almost 1200 episodes. I don't want them to be lost, because I think, I think the the secret to a lot is held within these conversations in this podcast. So that's one of the things I'm trying to do. But I could also see where you could, one time, go in and tell this, tell something one day, an app. Look, I have type one diabetes. I need to be reminded this is where I get my insulin from. I need this to happen. Like, I need you to remind me it has to be ordered three months before. Or, you know, I have to make sure my insurance covers it. Like, keep bugging me, keep telling me what to do, prompt me to do these things. Because I think if that doesn't happen. It's difficult, it's too much for people, and it doesn't like the care of a chronic illness. Doesn't mesh with a modern American lifestyle. Does that make sense? Yeah, yeah, like you said to me this morning, I you know, I said, How are you said I'm tired, right? And you're tired because there's more things to do than time, and so you're giving away sleep to do things. And then I said, I just woke up at 430 this morning to do things I didn't have time to do. If I would have woken up at seven o'clock, and I'm not going to be bored today. And in a life that goes like that, how do you remember to order your. Android in six months, you know, like that kind of stuff.
Julie 45:03
That's exactly the kind of challenge I have with ADHD, because that's what the that brain is lacking, the ability to remember, to do the little things like those. The people with ADHD end up in trouble with paying the bills with appointments. They're like, chronically late or disorganized and unable to have the right things when they need to.
Scott Benner 45:26
Yeah, but I think it's more people than just ADHD. I think that, yeah, where ADHD is
Julie 45:31
5% of your population, which is one in 20. So if you look at a room with 100 people, there's 550,
Scott Benner 45:38
I'm saying that, that even if it's not diagnosed. ADHD, I think more people have that than not like I think you see, in a family setting, you know, a mother a father, in a classic family setting, and a bunch of kids, somebody takes care of things. Everyone's not on top of everything, no.
Julie 45:55
And if it's, if it's a genetic, genetic condition, you're likely to have parents that are just as messy as their kids. Yeah,
Scott Benner 46:01
right. And then good luck. And I've had those conversations with people too, where they're like, Listen people as adults. They say, look, as a kid, I was not on top of things. My parents weren't either. And sometimes you hear it as, like, addictions too, like, I didn't know what to do with my diabetes. I turned to my parents, and they're using meth, so they weren't much help. That's not a thing I made up. That's a thing from an actual conversation. So you know, like when there's all these things going on, you're already seeing the ball being dropped in so many walks of life, this is the wrong path to go down. But a lot of people's trouble in day to day life stems from their own poor decision making. And it's not like poor decision making, like they set out and did the wrong thing, or they decided to snort coke today instead of going to work. I even mean like simple, make a left, make a right, do this, do that, you know, pay the bill today. Pay it tomorrow. Like people so frequently, make these little micro decisions poorly that it it throws them in a completely different way. They don't even realize it's happening. And, you know, like, when that's your MO, big things are really going to get booted you know, like, like, the big things are really going to get messed up. Like, when you see somebody who is, I don't know how to use an example, like, when you, when you, when you see somebody who goes to the gym three days a week, and they're fit and they eat well and everything. If you go look at their life, their lives are very much like that. It's because it's who they are. And if you go find people whose lives are scattered, you'll often see that their health is scattered, or that other things are dropped. A lot of balls are being dropped here and there. I don't say it's out of malice. I just think it's who they are, and then that's how it goes. I joke with my wife all the time, if it wasn't for me, we'd be broke, and we all laugh about it, but it's true, like my wife doesn't pay attention to money the way I do. If it was up to my son, he wouldn't have thyroid medication. He's 24 years old, like, I'm still the one that says, Hey, do you have your thyroid medication? You know what I mean? Like, I'm the person in that house. Now, my wife is completely capable. I'm not saying she's not. My son's capable. Everyone's capable, but there's only one person in this house that has a caregiver mentality, and that's me. And so if you don't have that, and you're by yourself, you need help. You just do and you know, I'm sorry. It's just, it's, it's upsetting to me, because I get to, I get to hear all these conversations from different perspectives all the time.
Julie 48:33
So sometimes I'm used to be, I used to be that person in my household, too. I imagine you are, yeah, the one that plans ahead. But that being said, I calm down, probably my my own anxiety by planning.
Scott Benner 48:46
Oh, really. Oh, that helps you. I would love to stop helping people.
Julie 48:52
No for me, it it helps because otherwise I get upset at as how messy they are. No, like, how disorganized, how I don't know, so planning helps me.
Scott Benner 49:04
Yeah, I get that. For me, it's all very much about health and forward motion. I only get upset if people aren't healthy or moving in a good direction, like those are the things that upset me. If I see my family struggle that that's where it gets me. The rest of it, they can do whatever they want. I don't care. And there's a big part of me that would like to forget about everybody and just be a lazy person once, but I don't even know what that feels like. I realized the other day I was watching a football game standing up, and I was like, why am I not seated while I'm watching this? And I really I was like, I was in the kitchen, and I'm like, why am I not like? I woke up in the morning. I said to my wife, I really want to watch that football game at six o'clock tonight. She goes, nobody's stopping you. I was like, great. And then six o'clock came, and I'm like, you know, I start watching the game, and I'm watching it from the kitchen, and I realized, I'm like, I'm doing the dishes. I'm cleaning up. I made some food. Food. Like, no one asked for food. I just started making food. I was like, You know what? I have sausage and shrimp. I think I could put a pasta together. Do I have tomatoes? I do. I made a sauce. Like I did the whole thing. And I'm like, watching the game, and I'm like, No one even asked me for this pasta. When it got done, they were like, what's this? I'm like, It's dinner. They're like, Oh, okay. And then I had that thought I was done and I was cleaned up, and I was like, I'm not sitting down and watching this football game. And I thought the majority of Americans watching this game right now are sunken into some sort of a sofa watching this game. And I'm not. And I just, I don't know what that is about me,
Julie 50:33
just like you, I would be running in circles too. Yeah,
Scott Benner 50:37
I don't even, I don't understand it. I came in here this morning to do something that had to happen in this room that had nothing to do with the podcast. And then I realized I could do it while I was doing something else. So I sat down and was hanging I was writing out bills. Basically, I was paying bills online. So I was paying bills online on on one screen and on. And I happen to be lucky enough, I have two screens. I record the podcast on one computer and I do my work on the other. So on the one computer, I was paying the bills, I turned to the other computer and I started writing an email to the advertisers about why podcasts are such good ways to use your advertising dollars. I was sending them facts and figures and like opportunities to to they're all already signed up this year. I'm like, selling them for 2025 already. I'm like, it's in January, Julie,
Julie 51:35
I hear you. I'm the same way.
Scott Benner 51:38
And I'm like, and I'm putting this email together. I'm like, Ooh, is this good? And I'm paying my bills the same time. But I'm a very relaxed person. I love calm. I love sitting around. I love being relaxed, and everything else. It's when I get around other people that I care about that I worry about them more than I do about myself. And so I just everyone needs a little bit of that because, I mean, I'm I have enough of it for everybody who listens. And I actually, I saw somebody respond to me on Facebook the other night, and she said, I'm just here to say how much I appreciate the effort that must go into making that podcast. I know many of us here would not be as healthy without it. And a lot of people came in to kind of like, jump on and say, Yeah, me too. And I was like, Oh, this is the one place where my energy doesn't get split between people, because the delivery service works the way it does. I'm basically talking to one of you, but it's many 10s of 1000s of you that can, can still hear it. It's still my one effort of time. But I don't know, like, I want everybody to be okay or better than they are. And it can be frustrating sometimes to look up and see that they don't want that for themselves. They need it, and they're looking for it, but they don't want it enough to do it. I guess it's hard for me to say, anyway, I'm so sorry. Don't be sorry to kind of to go back again. You said, like 20 minutes ago. You try to explain this to people in the hospital, like this, your new understanding of diabetes, but you don't think they get it, or they don't have time for it, or they what is it? It's not
Julie 53:17
necessarily lengthy discussions. I need to take the opportunities that I'm given and not expect to have a three hour discussion with anybody, because, as I said in ICU, everything is not everything, but a lot of things are foreign to everybody. No, it's a very different setup. But the one part I can do is when I make suggestions on how we could adjust people's insulin, I try to give an explanation to go with it. You know, sometimes you have people that come in that are, where are the people who get a tray and eat food? A lot of them are fed either through their veins with parenteral nutrition or with two feet through their nose in the formula, yeah, form. And a lot of times people come in, and not often times, but once in a while you have somebody that comes in that just has basal and a correction scale, and you kind of have to explain to them that this will work until it doesn't work. If your patient starts throwing up, then your basal is too much, and you need to kind of AIM roughly for like a 5050, and you have to explain to them that when you're fed around the clock like that, you cannot just put the B bit on the usual like Umu log and Lentis or whatever it is, and hope that it's going to work. You actually need to have your basal and then you need to have a proper human and R every six hours, because your carbs don't go in like a big meal at once. They come in trickle over time, and you have to do it every six hours, no matter how convenient or not convenient it is to get poked at midnight, it becomes the way to keep a better care of your blood sugar, because we don't see what happens in between the month. Ring, you know, like when they poke four times a day, plus when they're worried. That means that you get four numbers a day. You don't know what happens in between the two. You don't know if you give them your log and they bought them out, or they get close to it. You won't know unless they are actually able to tell you, or they physically show signs that they are hypo and same for the highs. And then sometimes people, there's often times people with delirium, that the fact that their blood sugar swings around or goes all the way to three, four hundreds during the day is not necessarily taken into account as part of why their brain is functioning so poorly. Yeah, I know. So I'm able to, as I said, not necessarily have a three hour discussion at once about diabetes, but like, put bits and pieces of explanation as we decide to to make changes, or as things change. Patient was eating a normal tray and is now tube fed. Or
Scott Benner 55:56
is it not possible to take a small squadron of nurses and, like, really drill down and teach it to them. Take five of them and just pull them aside, you know, a couple of hours a week.
Julie 56:07
And the unit I work on has 150 nurses,
Scott Benner 56:11
yeah, but I mean, if you like to put a seed down, like to put a handful of them into the pool that really understand insulin, how it works, and how to manage and then, you know, start off by putting them on the people with diabetes, and then pair them with somebody else to watch what's happening till they can learn. Like, is there not a way to teach people this? I mean, I learned it myself, and I teach people without even them being with me. Like, is there not a way for them to learn how to do this?
Julie 56:40
The nurse usually has very little to do with the adjustment of the regimen. Like, other than what, no, when they aren't an insulin infusion, they're the ones that they're given a range of blood sugar to target for. Yeah, I know. And then they will adjust the infusion up and down to achieve that. But beyond that, like in the B bit, per se, they don't necessarily adjust. They are going to do what they're told, right? And they have also, a lot of them have quite a bit of experience that makes them refractory to change,
Scott Benner 57:12
yeah. Oh, you can't teach an old dog new tricks. Is that the same?
Julie 57:16
No, but when we're, as I said, like when we do rounds, like when we spend half an hour talking about each patient every day on rounds. Well, the stuff that I teach a resident through little bits and pieces while the nurse is there to listen to as well. And so you hope that some of it, I don't want to become also a one woman show that talks about diabetes all day long, but doesn't do the rest of it. Yeah, yeah, there's limitations, because even my colleagues wouldn't be, I don't think would want to do any of this, like they would feel at loss, just like I was before my son got diagnosed. Yeah,
Scott Benner 57:51
I hear it, okay. Well, this is depressing,
Julie 57:57
but this is but it's just a context that's very difficult with people that don't have the reflexes that you and I have every day,
Scott Benner 58:05
yeah. Well, also it for people listening. What you have to take away from this? Have to take away from this, in my opinion, is the hospital is for emergencies. They are very good at emergencies. You break your arm, you have a heart attack, your gallbladder fails, they're going to help you, and they're going to do a great job at it. You know, you have cancer, you go to a cancer center. Those people know how to help you, like that's that's the stuff you want to go there for 100,000,000% if you're having heart issues because of your type two diabetes has been out of control for years. And you go to the hospital, they're going to help you as best they can with the emergent problem you're having with your heart. They are not going to help you fix your type two diabetes. And I think that that's mostly what we have to change in impatience, is the idea that there's a magic place, somewhere where everyone knows everything. And if I go there, it's all going to be
Julie 58:56
fixed, you know. Or they will, they will get the ball rolling, but
Scott Benner 59:00
you have to pick it up and keep running with it exactly. Yeah? Well, in a world where people can't remember to take vitamins, I'm sure that this is going to be no problem. Everybody's going to take care of it right away. You gotta, I hate to say something cliched, but you have to prioritize yourself. Yeah, obviously, yeah. I mean, it is obvious, but doesn't happen. It happens for nobody, hardly ever. And when it does happen for them, they're they're doing it on Instagram, and we're all laughing at them for being in the gym for nine hours a day. There's not many examples of just average people putting in the average amount of effort that keeps you healthy, instead of, like, you know, making it their entire life so that they can stay focused on it, which I think is, is partly true. Like, I mean, I You see, that was one guy, he, like, runs like, 10 miles a day or something like that. And I'm like, Yeah, well, that's your brand. You sell that. Like, you have a podcast where you make money talking about how you run all the time. I can't go running for 10 even if I could run 10 miles for. Am I going to find that time at I make my money a different way? I have to be here in front of this computer doing this thing, I don't know, just do the best for yourself. You can. But don't give up, and don't ignore it for God's sakes, like, just put your best effort into it, you know. Or otherwise, you're going to be 63, years old one day sitting in a doctor's office, and they're going to tell you something that's going to sound like, Oh, that wasn't supposed to happen until I was 80. Not a lot of coming back from stuff like that. You know, at a finite amount of time to take care of yourself, the work you put in now, almost in everything you get paid back later with it. And that might be some of the problem, too, in a society where everybody's used to getting something immediately, you know, the work you don't take a vitamin today to feel better today. You know you might not even notice it, even when it's helping you. I think that's hard to wrap your head around. Sometimes, anyway, you have any parting words, Julie,
Julie 1:00:54
yeah, make sure that you're part of the priorities. Self care is definitely worth it. It's worth it to let go of some little things that, in the end, don't matter that much, to make some space for yourself.
Scott Benner 1:01:08
Yeah, that's good advice. Also, can I show off a little bit from my high school French class? No means nine.
Julie 1:01:14
Good start. Good start.
Scott Benner 1:01:16
It took me three years to learn that. I don't have, I don't have that kind of time to put into the rest of it. I might know a couple of the other numbers, but I don't want to show off, and my accent is not good. Save that for the next podcast. Yeah, yeah. We're gonna save it where I go, like, I can maybe get this, yeah, maybe five or six I can get to. And then there's some loss in there, and I know enough means nine, and then that's pretty much it. I do remember my French teacher was very pretty, but that didn't seem to help anything.
Julie 1:01:47
See my husband, he's born and raised in Edmonton, where we are, and he told this French teacher in high school, like, why am I doing this? For not knowing that he was going to marry me? So obviously,
Scott Benner 1:02:00
he had a good reason. By the way, if my French teacher was in her mid 40s, as I expect she was, that was 37 years ago, she's 82 now. So hurry up and figure your stuff out, because time goes by real quick. Bud down, if you're out there, I didn't understand a goddamn thing you were saying. Hilarious. All right, hold on a second for me, Joey, please.
A huge thank you to one of today's sponsors, gevok glucagon. Find out more about Chivo hypopin at gevoke glucagon.com, forward slash juice box, you spell that G, V, O, k, e, g, l, U, C, A, G, o, n.com. Forward slash juice box, a huge thank you to ever sense CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the ever since CGM, you just replace it once every six months via a simple in office visit, learn more and get started today at Eversense cgm.com/juicebox, the conversation you just enjoyed was brought to you by us. Med, us. Med.com/juice, box, or call 888-721-1514, get started today and get your supplies from us. Med, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective, the bold beginning series from the juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to juicebox podcast.com and click on bold beginnings in the menu. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast. Hey, what's up everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.
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