Scott Benner 2/28/24 Scott Benner 2/28/24

#1141 DJ Eight Years

DJ was misdiagnosed with type 2 for eight years.

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Scott Benner 0:00
Hello friends and welcome to episode 1141 of the Juicebox Podcast.

DJ is 52 years old he was originally diagnosed as a type two, and actually remained misdiagnosed for eight years. He's drastically changed his diet, his exercise, and this is his story. 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. 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 juice box at checkout to save 40% at cosy 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. If you are a loved one has type one diabetes, please go to T one D exchange.org. Forward slash juicebox and complete the survey. That's all I need you to do. You will be helping immensely. US residents only takes fewer than 15 minutes to complete T one D exchange.org/juicebox. This episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. And find them on Facebook and Instagram touched by type one is an organization dedicated to helping people living with type one diabetes. And they have so many different programs that are doing just that check them out at touched by type one.org. Today's episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G seven and G six continuous glucose monitoring systems. dexcom.com/juicebox This show is sponsored today by the glucagon that my daughter carries G voc hypo pen, find out more at G voc glucagon.com. Forward slash juicebox.

D.J. 2:21
My name is DJ. I am 52 years old. And I was diagnosed type one officially in November of this last year. So coming up on one year here in a couple of months.

Scott Benner 2:34
Type point. Okay, but you said officially. So November T one your mind? You're my age, I think you're probably the first guy I've ever talked to is my age. How long were you misdiagnosed

D.J. 2:47
eight years old? So yeah, I was diagnosed type two in 2015. And I'll kind of walk you through that we you you. I mean, there are a lot of people that are like, Oh, that's a lot, or you know, 1.5 or whatever. But, you know, when I went in to that appointment in 2015 I fully anticipate I mean, I had all the symptoms. Yeah. But I you know, I had lost so much weight and I was so frail that I thought I was getting diagnosed with cancer or something, you know, you well, you read the internet, it's always cancer or diabetes. So, you know, I knew it was one of the two. And so I went in I had I went in fasting, of course. And you know, I knew when the nurse did the fingers thick, like it wasn't good news. And then they ran my a one C It was 15.70.

Scott Benner 3:39
Yeah. And this is in 2015 2015.

D.J. 3:44
Okay. And they did a C peptide test. Alright, this is where it gets sort of, you know, confusing. I'm not a doctor, and I'm well aware that anything that you hear on the Juicebox Podcast, you know, but But I looked at the C peptide number, and I didn't know back then what I know now. And it was on the very low side of normal. So it was under two, right? Yeah. So at 15.7 A one C. You know, if I actually was a type two, I would have been making so much insulin with the insulin resistance that that would have been like, I think off the charts high, but that's where it stopped. We didn't do any more investigation. And because that number was like 1.8 It was like what your type two. So I did a full life change and started working out every day. I went extremely low carb and for a long time, seven and a half years. Got my A onesies down into you know 645554 And really just I can't I stopped testing my blood sugar because every time I would test it, it was fairly normal. And that's kind of how it started.

Scott Benner 5:08
How long were you testing for? About five, six years? Well, that's a lot of fun. You know, just I'm going to read this here for people, this is straight from the NIH. To interpret your seed peptide levels, a normal C peptide plasma concentration is in a fasted state point nine to 1.8. ng milliliters don't know what that is. A high level could indicate insulin resistance insulinoma, or kidney disease, a low C peptide is usually present in patients with type one or sometimes type two diabetes. So And where was yours again?

D.J. 5:45
It was under two it was like 117. Something like that?

Scott Benner 5:51
Insulin resistance. Yeah, I mean, so

D.J. 5:54
when I look at it now, I think I would have been much higher with a 15.7. Right. And they didn't do any antibody testing or anything.

Scott Benner 6:05
Yeah. And the reason that's still of interest to you all these years later, is because of the struggle you had, I would imagine, do you still? I would still be thinking about it, honestly. Yeah. So my gosh, so you do just diet and exercise? I mean, what were you eating?

D.J. 6:22
Mostly, you know, mostly proteins, fat, and veggies. And really nothing else. Which, you know, I, that sort of became a way of life for me. And I got so used to it. And I felt good. I felt like I had more energy than I had had. And I mean, that's because I was bringing down my, my agency and my, you know, my blood sugar was in, in a normal range. I understand that now. But you know, at, at the time, it was like, Well, this is really working, I feel great. I feel like I've got more energy than I've had since I was in college. And I was fit. And I wasn't, I for sure wasn't one of these people that is like out there preaching that you have to live your life low carb, but it worked for me. And, and it worked for me until it didn't work for me.

Scott Benner 7:24
The Dexcom g7 is sponsoring this episode of The Juicebox Podcast and it features a lightning fast 30 minute warmup time, that's right from the time you put on the Dexcom g7 Till the time you're getting readings, 30 minutes. That's pretty great. It also has a 12 hour grace period, so you can swap your sensor when it's convenient for you. All that on top of it being small, accurate, incredibly wearable and light. These things in my opinion, make the Dexcom g7. a no brainer. The Dexcom g7 comes with way more than just this. Up to 10 people can follow you you can use it with type one, type two or gestational diabetes, it's covered by all sorts of insurances. And this might be the best part. It might be the best part alerts and alarms that are customizable so that you can be alerted at the levels that make sense to you. dexcom.com/juice box links in the show notes links at juicebox podcast.com to Dexcom and all the sponsors when you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily G voc hypo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hypo penne and how to use it. They need to know how to use Chivo Capo pen before an emergency situation happens. Learn more about why G voc hypo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma visit G voc glucagon.com/risk For safety information. So do you think you were Lada Do you think you we're having a very slow onset?

D.J. 9:51
If I was it was because of the diet and exercise that elongated that yeah, that final onset.

Scott Benner 9:59
We You in hindsight, do you see any signs of decay during those times? Were you way too skinny? Anything like that? Okay, you are way too skinny, way

D.J. 10:10
too thin? Yes. Like I saw photos of myself, like, my wife would say, Are you losing weight again, and I'm like, I shouldn't be I eat like a horse, you know, I could go, I travel a lot, I have a couple of businesses that caused me to travel a lot. And, you know, I could go and eat dinner. And by the time I was finished eating dinner, be hungry for another dinner, and stop on my way back to the hotel for another dinner. And then when I would get to the hotel, I'd be like, there's got to be some like mixed nuts or something down here, like, and I would go and buy four bags of peanuts, or almonds or whatever. And I could not gain weight. Were you paying a lot as well? Well, at the initial diagnosis, for sure, but but then no, like, come November, it was starting to get back to I knew something was, you know, I mean, I knew what was up, I didn't know that I was type one. But I kept thinking in the back of my head, like, what I'm doing isn't working anymore. I'm going to end up while I went into this new Doctor thinking, hey, I'm gonna ask him to put me on Metformin again. That's what I thought.

Scott Benner 11:24
How long had you done Metformin in the past for

D.J. 11:28
one month?

Scott Benner 11:29
Why did you get off it so quickly?

D.J. 11:31
Because my a one C went from that 15, seven, down to six, four, and my doctor is like, you don't need Metformin anymore.

Scott Benner 11:38
So he thought you had an onset of type two diabetes that you so arrested with diet and exercise that, that there really wasn't any need to do anything else was the 100%.

D.J. 11:51
That's what I'm percent okay. Oh, wow.

Scott Benner 11:55
When so when you what makes you go to a new doctor.

D.J. 12:01
There were several things that Listen, my doctor, that particular doctor, the probably a lot of people would be like, I don't know how that's possible. He's still a friend of mine. He, he retired this past year, but that's not what made me switch. I knew he was getting ready to retire. You know, I've sort of had in the last seven to eight years of my life, really more of a focus on not just health, but more like Holistic Health. And so I was seeking out integrated health facilities, and instead of what I would call more traditional, and so that's what moved me into this new care that I'm in now. So actually, it's an integrated health facility here. It's a fairly large practice. But I walked in, I it takes months to get an appointment because they're so busy. And this guy, I probably won't say his name, although I know he's listening. He'll be listening, because he started listening to this now. I was his very first patient, actual patient. He had been a PA and training and all that, but I was his very first patient. And I went in just thinking, you know, well, I just need some Metformin. It's been a wild ride with him. And he's been fantastic for me. But he's now you know, he's listened to this podcast. And he's, he's learned a ton through this whole journey as well. But he knew that what I had been through before, you know, we didn't want to repeat.

Scott Benner 13:44
Plus, you probably had him on a good day. He's like, this, is it. My first one? I'm gonna do a good job. Really?

D.J. 13:50
Yeah, well, and the crazy thing was like, when I walked out of there, you know, he prescribed Metformin. And when I got to the pharmacy to pick it up, you know, I hadn't checked, you know, everything's on, you know, these, like, my chart kind of things and all that where it's all digital, well, I get to the pharmacy. And I said, Hey, you know, give my name, birthday. I'm here to pick up one prescription and she said, Oh, is it these two types of insulin? I think now, there's must be some mistake. And so I'm, I'm, I get out of line and I go and look. And there's this big long paragraph of I consulted with the two other founders of the practice. And we believe that based on the blood work that we got back and where you're at, we believe that you need to begin insulin immediately.

Scott Benner 14:47
Did they think you were they were giving you insulin as a type two still? No,

D.J. 14:51
they they, in that little email it? It was you're either type 1.5 Or one or they didn't know. But they knew I wasn't tied to.

Scott Benner 15:03
Is this a place where, if I'm prying, you'll stop me? But like, is it a cash pay that you turn into your insurance later? Really hard to get into that kind of doctor's office?

D.J. 15:14
It is, but at the time, my coverage worked there, it doesn't anymore. We switched. I own. I own these businesses, and we switched insurance companies and the new insurance company doesn't work there. But so yes, it's that type of place very hard to get in,

Scott Benner 15:29
I'm just going to like, to be clear with people, that's the kind of endocrinologist I send my daughter to now that she's not at a children's hospital anymore. My whole family has their thyroid managed that way. You know, we tried going through, you know, what you would consider like a classic practice and you just don't get you don't get enough attention, especially for these things that need to be adjusted now like this endo is not helping Arden with her insulin or anything like that, we're we're doing that. But even with just you know, Arden came home from school, Something seemed wrong, it didn't matter, you know, boom. And he's like, she hasn't been here in a while like she's been off at school, let's do bloodwork. He sent bloodwork out, comes back over, TSH is off, we'll do this, you know, we're gonna move her to, you know, we're gonna she's like, I don't think that she needs her tiersen put up, but I do think she kind of needs a blast of it. And so I want her to take, instead of point eight, eight every day, I want her to take one every day for 10 days. And switch back to point eight, eight. I don't want to switch your script because that'll be irritating. So I'll just mail you a sample. Like that's the kind of Mr. Boom, it's at your house. And you you have a phone call with them a follow up after you know your bloodwork. If there's somebody else in the house that she sees also, she'll talk to them to you don't get a different bill. Like it's all it's exactly the way you think healthcare should be. Yeah,

D.J. 16:55
it's and you're, you're describing something very similar took me took me a minute to get there. And once once we really finalized the the diagnosis. They, their first inclination was we're going to get you an endocrinology referral. And so I did, I went to a traditional endocrinologist. And we can dig into this further if you want to. But I had already been listening to the podcast, I had already done a consult with someone at Integrated diabetes. I was reading and consuming just loads of information, and I was on MDI, I went there thinking, hey, I need something that will be able to that I can, I don't want to use traditional needles that I'm pulling out of vials, I want to use pens. So maybe like I'll use the ink pen, or maybe I'll get like a junior pen, I need something I can give myself half doses because I was already I had gone for. So that second diagnosis, my agency was 13 Six. And I had already gotten it down to six for when I saw that endocrinologist and I knew there was room to go and he's like, You're being too hard on yourself. And I'm like, Well,

Scott Benner 18:15
you're not the right guy for me. Yeah.

D.J. 18:18
So I had that one meeting. And he kept saying, how do you know this? And I in my head? I did I I didn't say this to Him. But I kept thinking, How do you not know this? And then at the end, I actually did say this, because he kind of gave me the range. And he told me not to be so hard on myself. And you know, six, four is great. And by the way, six, four is great. But I knew it wasn't. I knew it wasn't my best. And, and so I just told him, I said, you know, I think you've misunderstood. I said this was an interview. And I'm not going this direction. And you know it, I haven't gone back there. I wrote a big long ladder to this integrated health facility where just my you know, that this brand new, this brand new doctor, along with the partners there and I said, Look, this is what I want to do. Will you support this? Will you write the scripts? Will you allow this to happen? And after about a week, they said, Yeah, we'll do it. And so I came in I told them and had sent them all of the info on looping Omnipod dash and the big six on on G seven now, but they went for it. And my last day once he was five, two, I think I'm I think I'm under five now but I'm due for another one here in the next several weeks.

Scott Benner 19:54
Once you got the insulin you started understanding how to use it. Did you adjust your diet or did you stick with what you were doing?

D.J. 20:00
Well, I've had more candy in the last nine months than I've had in the last eight years. But that's just to address little lows, I have sort of stuck with the kind of stuck with the low carb, just because it's, I didn't really miss anything from before. I'm all about people eating whatever they want. So, and whatever they feel good about, it feels healthy to me for my feelings, you know, plan, but it's not for everybody. So, you know, this morning, I had five eggs for breakfast, or a piece of cheese, and I'm very full. I don't need anything else. You know, if I get the, like, the need for a little something sweet. I'll, you know, in the afternoon, I'll have a coffee with, you know, a square of dark chocolate with some almonds in it or something. And, you know, that's plenty for me. I've had a couple of thing times where it's like I'm, well, you kind of feel like you, you get that feeling of you're going to eat everything in the kitchen or whatever. And you realize you don't need that many carbs to bring you up from 64. You know, in fact, if you cut your basil and wait 15 minutes, you might just be fine. You know, it's just been a huge learning curve. And I've put I put 80,000 miles on my car in the last two years. And so 40,000 of that has been listening to the Juicebox Podcast.

Scott Benner 21:32
Oh, thank you. I appreciate that. And all of you should be driving that much. Because that would really help me. How did you? How did you find the podcast?

D.J. 21:40
I kind of you know, it's one of those things where there's so much I don't want to say misinformation that sounds like, but I think you know, people don't understand and you can't expect them to understand if if you name some disease that I have only Ansel airily heard of, I'm not going to have an understanding of what it is. But, you know, you, you kind of, it's that whole, you see people with a pump, and you see people with the tubing and, and all of that works great for a lot of people. In fact, I have a young guy that works with me, and he's on he's on a pump, and he's got the tubing, and it has been like that since he was six years old. It works fine for him and, and wonderful. I just for my lifestyle. I I just Googled, I was like, there's gotta be a pump that doesn't have tubing. And so the first thing that came up was obviously Omni pod. And then there was a link to your podcast, and in some Google search. And so that's how I started listening to it. Wow,

Scott Benner 22:45
I have heard my SEO for Omni pod is strong, strong. Yeah, that's a that's good news. At this point, I've watched people find it in so many different ways. I couldn't have I couldn't have possibly set this up. It's one of those things like, you know, people are like, Well, how do I do a successful this or that? Like, what should I link to watch that? I'm like, I don't know, I really don't. I'm like, just put it out there. If it works for people, it'll, it'll grow. Yeah, like to know that you were basically saying to yourself, I'd like to get a pump that doesn't have tubes, but ended up finding the podcast as well as really interesting, though, I appreciate that. That's excellent.

D.J. 23:22
Yeah, absolutely. And, and, you know, it's so it's so interesting, because when I first started listening, I think my first episode, I can't remember which one it was, but it was an after dark. And because I just randomly I'm like, Oh, well, I'll just start wherever it is right now. And I can always go back and forth. And and, and so, you know, you pick up whatever the episode is you, you sort of pick up a useful tidbit of information somewhere in there, whether you know, whether 90% of it applies to you or not, you know, there's kind of that 10% or 20% or even just a tidbit where you're like, wow, I didn't think of that. And, and so I started picking up what I would call nuggets in some of those and I talked to my wife and and I was so frustrated with my well with myself at the time because I you know, I was having these highs and I couldn't bring them down. And you know, I kept saying, you know, I need to get something where I can do half dose or I need to split my my long term insulin and she's like, you know, maybe for your mental health. You should stop listening to this podcast. I think it's driving you crazy. It's like no, no, this is the thing that's helping me. I said it's all the other noise that's actually driving me crazy. I said it's just I said it feels like I'm drinking from a fire hydrant. And I just can't consume enough information. So I actually made a I made a couple of spreadsheets and started tracking in a In a notebook on my iPad, just the bits of information that I would want to go back and listen to. And then I started going through all of the all of the different series, you know, the bold beginnings, and the pro tips and all of those types of things. And it was like, once I got through that, and I felt like I kind of finally have understood these terms and know what's happening. That's when it just all started clicking. And I had heard you say that before? Like, I know, it sounds overwhelming. People are throwing, you know, terms and numbers and this and that around. Keep doing it. And it will come together. Yeah. And that happens.

Scott Benner 25:42
I'm glad. i That's really wonderful. i It makes me feel terrific, actually, because you experienced the podcast the way I mean for it to be taken in. Yeah. And it worked. Which was exciting. Because I always think, well, the first thing is that i is that I really believe that if you just stack all the information up in one place, it'll be overwhelming and boring. And most people won't be interested in it anyway. Right? You know, so you have these conversations with people, which you get the bonus of like, getting to listen to other type ones type twos live their lives. And and I think that's interesting. And then I try to blend in enough entertainment that you'll make it through so that the conversation can unfold in a way where that nugget comes out.

D.J. 26:28
Right? Yeah, it's fantastic. And I'm on not just your Facebook group, but I'm on a couple of other what I would say, our online type one communities, and I'm always putting links to, you know, I'll hear something and I'm like, Well, this, I know that this addresses that now, I'll put a link I'm sure people think I'm nuts. But I, you know, I I'll be clear that you're not paying me to say this, but the podcast is it truly did change the course of my life.

Scott Benner 27:02
I appreciate that the information, it changed my life, too. It's just yeah, I'm the one that pulled it all together into one place worse. I mean, we were really lost. And a lot of my life was like overwhelmed and crying when our son was young and had diabetes. And I didn't know what I was doing. I almost did it the same way. But mine was trial and error and the ability to not have to focus on much else because I was a I was a stay at home dad and I had a baby. So I didn't have much to do except look at her and wonder what the hell was happening to her? Yeah,

D.J. 27:34
I felt sort of paralyzed at first, because I've got I've got two businesses, and I've got, you know, 60 employees. And I mean, everybody, you know, everybody needs something at any second. And, you know, for about a month, it was I couldn't process what was going on. And there were times where I thought, you know, if I don't get this under control, this could change, you could really drastically change the course of my life.

Scott Benner 28:04
And I do see how so many people end up with good enough. Because there is there's too much going on. Like I'm trying to be honest and say that if I had a job, and Arden was diagnosed with diabetes, I don't think I would have figured it out. And I'm pretty, I'm pretty sure the doctors wouldn't have helped me get there. Right. And that that's it like I was able to stare and stare I was I was sharing with someone yesterday on an episode I was making, how when my son got Hashimotos his only symptom was these crazy hives from his waist to his neck. And they would come if his body heated up. So if he laughed, got angry, tried to lift something up, move too quickly. This is literally what would happen to him. And then the only way to make it stop is either have to run out into the freezer. It was luckily November, he'd have to run out into the cold until it went away. Now he wasn't warm. It's not like he was out there and like, Oh, this feels good. He was freezing. But he was outside freezing. And it would make the hives like dissipate. So this is going on for a month. And we're going through all the normal channels trying to figure out what's going on. And I just can't take seeing him like that. So I'm like living my life. I'm making this podcast I'm doing all the things I'm supposed to be doing. And then when everybody goes to bed, I would get online and just read and read and try to figure out what was happening. Yeah, and one day I found this NIH article that talked about hives as a very uncommon symptom of Hashimotos. And I sent an email at three o'clock in the morning to the endocrinologist who by the way, if you guys have heard the the episode about Hashimotos and hyperthyroidism, it's that doctor, she's the doctor that we use. I emailed her that night I sent her the article, I laid out what my thinking and she goes yeah, right like let's give them The Met and see what happens. And like a week later, it started to get better. And I felt so relieved. Like I don't I don't know how to tell people like when I was explaining this to the person yesterday that I was talking to, like, I was just saying it like it was a normal thing. Like, obviously, I would do this thing for my son. And she said, I don't think a lot of people would have done that. And I don't know that that's true or not, I guess I don't know myself that well, you know, and I try not to judge myself against other people. So I haven't really thought about it that way. But that's the only thing that saved him. Like, we were going down a completely different path with a regular doctor, they were getting ready to give him some like, once weekly injection of some new medication or something like that. And we were like, freaking out. Yeah. And when that helped them, like, that's the feeling I had, when I, the day that I said to my wife, like, I figured out how to take care of diabetes. I was like, if there's a system within all of this, and it's not that hard, it's kind of like easy, almost, if you can wrap your head around it and understand a couple of these ideas. And I said, by that I had told her I'm like, I'm gonna make a podcast about this. So it was just, it was that feeling that I had, the way I explained it with my son, when I started the podcast, blogging heads like died, like people just stop reading. And I thought, oh, all of this information I've put into this blog is going to disappear, like, no one's going to see it anymore. And I just felt like, it was unfair for me to know this. And for you not to know it. That seriously, it's just how it struck me.

D.J. 31:44
So I'm glad you I'm glad. I mean, obviously, there are 10s of 1000s. I don't know how many, but a ton of people that are that are grateful that you didn't keep it to yourself, I guess you maybe people would start to figure it out. If they just over time, it would take a lot longer, it would take a lot longer.

Scott Benner 32:04
The way I think of it is that I'm sure some people would, and some people wouldn't. And the ones who wouldn't, are going to suffer needlessly. And the ones that would eventually are going to end up with my memories of when my daughter was two. If that's something we can avoid, then I think that's terrific. But one way or the other. We live in a world where people get diabetes, they go to a doctor, and they fundamentally don't have any more information when they come back from the doctor than they did before they went. I don't even care why that is it's just the truth. So you know, if I can tell you something DJ, that you'll keep to yourself worse until this comes out. If I look over here at my whiteboard, the next thing for Jenny and I to do together, we're finishing up the MythBusters series right now. And then we are going to go into making a series of episodes that is directed specifically at doctors and clinicians. And we're gonna talk to them about how to do this thing and see if we can get that to catch on for people too.

D.J. 33:06
Yeah, that's, that's great. Yeah, we'll

Scott Benner 33:09
see what happens. I don't know how you run a business with 60 people, like I run a business. I'm the only person and I, some days I'm like, I don't know how you do it with employees. That seems like a lot of effort.

D.J. 33:23
I have a really good team. Really, really good team. Yeah. So blessed with that, for sure. We, we've grown a lot, you know, in the last several years, and I kind of look at I'm not a huge sports person, but I love using sports analogies. And I feel like we've put people on our team that we know are to the caliber of where the rest of the team is performing or beyond because when you kind of bring in talent that's beyond it pushes you to another place. And that's really what's happened with our team over the last couple of years. So they've, they've made it very easy on me.

Scott Benner 34:04
Excellent. Now I There are a number of really wonderful people that helped me online with the Facebook group. And as a matter of fact, I would say that a lot of the information that comes back from them, helps to shape the podcast as well. Because they have sort of their eye on what people are talking about, when I don't have that kind of time to like sit there and mine it and find out what's on people's minds. I don't mean to say that, uh, it's just the all the other stuff like, you know, there's yesterday at one point, I was an editor and an IT person and then somehow I got involved in billing. It was almost like same three and a half hours I would walk out of the room, use the bathroom walk back into a completely different thing. And change hands. Yeah, exactly. And then I and then I actually had that thought later. I was like if I tried to go get a job in the real world, no one would hire me. I have no discernible skills on paper whatsoever. It'd be like It'll be like, what do you do? And I, ah, so much, I don't know how to put it into words.

D.J. 35:03
I'm a unicorn,

Scott Benner 35:05
I had a meeting yesterday morning with three people where we were devising another series with on the pod about on a pod five. And like, there's this moment when you go, Oh, they want my opinion. Okay, I'm not used to being that person still. So like, Alright, so we talked about it, and it sounds like it's gonna work out really well. And just another step of trying to help people have better outcomes faster.

D.J. 35:31
Yeah, that's awesome. And their customer support has been phenomenal. That's good to hear me.

Scott Benner 35:38
Well, they'll hear this. So I'm sure there'll be happy. I have a couple of questions. Right. So what could have happened in those first years for you, when they thought you were type two, like now you have all this knowledge looking back? Like what needed to happen, that would have stopped all this from going on for so long?

D.J. 35:55
Well, I think if, if they would have done one more test, if they would have done a gad antibody test, that would have helped. I think that if you're going to get a diabetes diagnosis, whether it's type one or type two, I mean, it's, you're already getting a blood draw, why not just do that test, they did the C peptide. So why not do the antibody test? I think that would have helped. I do think that it was sort of I mean, it was sort of a blessing in disguise, because it did prompt me to get very healthy from a diet and exercise standpoint. So you know, I'm not I don't have like some deep seated bitterness. i But I, I definitely wish it would have gone down differently. It was more shocking when I got the actual diagnosis than anything. But I think to answer your question, one more test would have changed the course of what I would have done eight years ago.

Scott Benner 36:58
Okay. Do you think you wouldn't have found the the eating part, if they would have immediately said, Hey, you have type one? It could have been right, like it could have just sent you in a different direction? It's hard to

D.J. 37:09
know it of Yeah, it could have, you know, because I'm a foodie, I mean, I, I love food, travel, did a lot of food trips, you know, where my wife and I would go to LA and you go to 15 restaurants in two days, and you go in and get, you know, just, you don't eat a whole meal, but you know, you get whatever they're known for. And then, you know, you're gone and off to the next place. And we loved doing those kinds of things. Yeah. And, and so things just changed drastically for me. So maybe I would have continued to, and I just learned, you know, I could have learned how to Bolus for all of that.

Scott Benner 37:50
Right? Yeah, I mean, I take very seriously the conversations around diet. So I'm in a weird position, because it is my position as the person who makes this podcast and runs that group online, that I don't care how you eat, I want you to know how to use insulin for whatever it is you're going to eat. Now, that idea comes from my belief that I can't change that for people. I've thought about it long and hard. And I don't know how to do something that would make a person have that moment that you had, and just say, I'm going to completely fundamentally change how I eat. I don't know how to do that. I watched the whole world try it over and over again for decades of my life, I don't see a path to it. So I've decided in my mind that as a person who makes this podcast, I'm not really in charge of how people eat and eat and even like to say that even if there was a perfect way to eat. I don't I don't see a way to make somebody do it. So let's let that go. And let them save their health. Right from from diabetes, and then hopefully they'll make decisions about their food intake. That's good for them.

D.J. 39:01
Yeah, I think they're two separate issues. Yeah, I do. I think I think there's there's a health and nutrition side. And then there's a managing diabetes and understanding the way that insulin works and et cetera, et cetera. Yeah, I'm making sure that your carb ratios are right, and that, you know, all that stuff. Right. And so I think they're two separate issues. And I think that the nutrition part or the fueling plan, or whatever you want to call it is, it can make it easier on yourself, for sure. But there are complications in that. And, you know, this is a side note when I was in when I was in college, I used to smoke and I had a girlfriend at the time, who is now my wife that did not approve of that. And I littered Scott I threw a pack of cigarettes and a lighter out the window and never smoked again.

Scott Benner 39:55
To do that to try to prove to her you were going to listen to her. Yeah,

D.J. 40:00
And, but but the point is like some people have, and I'm not, I'm not patting myself on the back or I'm not. But I just I have a willpower, like if I say, I'm not going to do this, or I am going to do it. That's sort of the way that it goes, you know, for me, and that's not that's for sure. Not for everybody. It's for sure. Not for everyone

Scott Benner 40:20
I've learned over the last four months. That that is not how it works for me. I am. I'm talking to you today. Today. I am 30 pounds lighter than I was four months ago. Yeah, that's awesome. Yeah. And it's crazy, right? And it's because, and I'm telling you, I wasn't a crazy eater. Like I wasn't taking in, like, if you could see me eat during the day before this, you wouldn't have said like, wow, that's insane. Like, I wasn't a healthy eater, like most of the time, but I was supplementing with things and you know, being careful, but I just I don't know what the point I'm trying to make here is like, I wasn't like eat a half a pizza and a bag of Doritos person, you know what I mean? Like it, it just, my body just didn't want to lose weight, I'd have to do something incredibly drastic to lose 10 pounds. And then it wasn't sustainable. And this we go V which is, is basically ozempic rebranded for just for weight loss, it has given me the ability to not eat too much, or sometimes, you know, a lot, you know, today, I'll get done with you. I'm gonna go take an egg. And I will probably put it in a pan scrambled with a mushroom and maybe a piece of shrimp, or chicken maybe. And I'll put it in a small wrap, and I'll probably won't be able to finish it. Yeah, I don't know what I'll do for lunch today. I haven't even thought about it yet. But like last night, I went to a bar last night and had snow crab legs, so and a hunk of bread. So it's not like crazy, right? You can you can eat. But there's something about that GLP one that it just feels like it feels like it gave my body a tune up, like take away the the hunger part. Because there's no doubt like I don't get hungry very frequently. And yes, my stomach will feel full, faster. But that's not the whole story. Like I don't completely know how to explain it yet. But there's something about that GLP replacement, that is making my body go to the size that it looks like it was supposed to be is the only way I can think to say,

D.J. 42:30
Yeah, it's amazing. It's amazing. You

Scott Benner 42:33
could have four months ago before this medication told me, I think you could have told me I was gonna die. And I don't know that I could have achieved what I've done in the last four months. So I mean, that's I mean, my knee, I had a knee surgery, I couldn't have exercise, my knee got better. I ended up having to have a surgery on my toe of all the weird things, which I'm going to the doctor this afternoon for and hopefully can take this bandage off. And so that would have slowed me down from exercising and now and there wouldn't have been it just wouldn't happen. Like I know for sure it wouldn't happen without the medication. And it's not because I was just willfully out there like Double fisting marshmallows. Yeah. It's pretty much it. I have to ask you a different question before I get too far away from it. Your original doctor who it sounds like you're friendly with? Yes. You must have had personal conversations with him about Yes. How did those go?

D.J. 43:26
Well, I actually called him after I was re diagnosed. I'm not going to look for it now and waste time, but I actually I called him and then we texted back and forth. And his response was, oh, wow, that's a huge life change. That's pretty much it.

Scott Benner 43:47
Not I I really missed that one. Now. Is that disappointing to you? On a personal level? Maybe but but you don't seem like you're that person though.

D.J. 43:57
Yeah, not a grudge holder really that much? I, I think more so it's disappointing for going back to conversation from earlier and this isn't a slam on all medical professionals, but it's just disappointing to know that you sort of get run through this system, where, you know, it's a it's a big machine, it's owned by, you know, some huge company that, you know, now we have seven minutes to see a patient and you can't, you cannot possibly understand, you know, everything that you're going to see. And, you know, the one day that they spent talking about diabetes 50 years ago when he was in school, you know, yeah, granted, he should have seen things in his practice. You know, but, but I'm not convinced When you're just talking to even nurses, and they don't even understand the difference between type one and type two, sure. And, you know, there's been plenty of evidence of that on, you know, online in, you know, on the Facebook group on other podcasts. It's just, it's just, it's a little disheartening. And it's a little overwhelming, it's a little confusing. And, you know, everybody has advice of what to do and, and, and you just sort of have to wade through all of that. And go, Well, all I know, is I have to advocate for myself and I, that is a challenge for a lot of people. Ya

Scott Benner 45:50
know, some people don't have it in them to speak up. And I don't mean that from like, a fortitude standpoint, personality wise,

D.J. 45:58
not judgmental. Yeah. judgmental, personality wise,

Scott Benner 46:00
some people don't have that. I don't know why I do. You know what I mean, but I hear something that goes counterintuitive to me, my happiness, my success, my families, and you guys by extension, and I pushed back on it right away. But, you know, that's just a, I don't know, that's wiring and how I was brought up. And it's not a thing I can take credit for. Just like if I was a person who heard those things and kind of turtled up and went inside. I couldn't blame myself or give myself credit for that either. You know, it's just it. But with that being true. Listen, when this is true, I just interviewed somebody the other day, who told me that when their kid was diagnosed in the hospital, they came in, the nurse came in to give the kid their first injection. And the mom said that when the injection happened, something looked really strange. And she even said, after the nurse left, that didn't look right. And some time later, the nurse came back in and said, Hi, I have to do the injection again, because I didn't do it the first time because she didn't take the cap off the needle. Oh, now, how could that happen? to her credit, she did say I'm back, I made a mistake. We're going to do the right thing now. But how could that happen? But in a world where that did happen? How do we not say something about it? Like you said, like, you know, giant companies own hospitals, they're probably wealth management companies, some of them, like you have no idea how many, like at this point, wealth management companies owned businesses, they don't know anything about. Sure. Yeah. So yeah,

D.J. 47:46
well, and so I was in a, this just rein me in if this is totally off topic, but, you know, I was in a sales coaching meeting several months ago. And they happen to use the healthcare, you know, segment as an example. And there were probably 20 people sitting in this room, and they said, the guy said, Hey, do you did you graduate from college? Or did you graduate from high school? And you know, everybody's like, Oh, yeah. Did you get a diploma? Yeah. Do you know where it is? Oh, it's probably in a box, somewhere up in my parents, attic somewhere or whatever he goes yet. Yet, every doctor's office that you go into, not only do they have one copy of their diploma, it's an every examination room in the building. Now, is that because they don't remember that they graduated? And you know, you start to think about that, and you go, well, the whole thing is sort of theater. Right? It's to gain confidence that I know what I'm talking about. And that was sort of when I was going through the middle of all of this, and that that was the sort of tipping point for me of like, I'm gonna go to somebody that actually can spend an hour with me until I'm going to actually go somewhere where, you know, I know it's going to cost me some money. I know it's going to be a little bit more, but I've got to get out of this churn and burn system.

Scott Benner 49:16
Listen, I went to a good surgeon for my toe. And still, when the surgery was over, he called me that evening, how you feel? And I said, I'm doing alright, because good. I said, Hey, what ended up happening there. And what he described was, none of it was what he said before the surgery. Like before the surgery, he's like, here's what the problem is. You've got a bunch of arthritis in this knuckle in your toe. And I'm like, okay, and he said, we're gonna go in there, we're gonna clean it all out. And it's going to be terrific. And I was like, Oh, great. He goes now, don't you know, that could go this way. It could go that way. But this is the problem. I'm like, alright. He said, Yeah, there wasn't really any arthritis in the knuckle of your toe. He said there was a bunch of torn cartilage is really weird. And I'm like, okay, And he goes up. Have you ever heard of microfracture surgery? And I went, Yeah, that's the thing like athletes get he goes, Yeah, I did that for you. I went, Oh, okay. So like, you know, with his best diagnostics, and, by the way, a good surgeon, right, like, so. I mean, I hate to say it like this. I live in northeast, I've the choice of good doctors around here. And I went to a good practice. And still, he didn't know what he was doing until he got in there. And once he got in there, he just did it. And, you know, I said, Well, what's the deal? And he goes, well, hopefully, fibrous cartilage will grow back. And I was like, Yeah, okay. And I said, is that Cartledge? Because, no, it's different. Cartilage can't grow. And I'm like, Okay. And I said, it's definitely gonna grow back. You know, we hope it will. I said, what if it doesn't, and he said, oh, we'll just fuse the bone in your toe. And I'm like, that sounds horrible. And like, Wait, why? You know, and that's my, my toe just hurt. TJ just like it was, you know, you're talking about this big thing with insulin and carbs and, you know, exercise and sleep and hydration, and that I could probably stand here all day and say things like that, that would impact diabetes, I get that they can't just know the whole thing. And if they can't just tell you the whole thing. But I keep coming back to why do I know? And they don't?

D.J. 51:24
Yeah. Why that's, it goes back to what that endocrinologist that I went to, and he's like, how do you know this? Yeah. I found a way to tell people. Yeah, how do you know they're in one, Skittle is one carb?

Scott Benner 51:39
I think that's my sticking point, right there is. I put myself in that position. I make myself a physician. I know I'm not perfect. I know a little bit of this theater. That's fine. I know there's not enough time, because the system works the way it works. I don't understand how then the answer I give myself that I'm okay with it helps me sleep is well, that's the system we have to this is the best I can do. Because I don't think that's true. I just think somebody would just you need someone with vision to do something different that and try and let it fail and try something different. And I don't maybe the system doesn't allow for that. And that's why you ended up at a at a doctor the way you do and why I use one for my family's thyroid. But even that, like it's not like my insurance doesn't cover it. I just have to I pay her in cash. And then I take the bill and I send it to the doctor's office and they send me the money back. You know, it's not like, it's not like I'm paying out of my pocket. And I don't get it back. So there's a way, but you got to know that that exists. And that's absolutely right. Yeah. And the truth is, is that the only reason that my family is in that doctor's office is because I knew Arden was in trouble. And it wasn't working through the Children's Hospital. We were not getting answers. And there were a lot of try this. And then you try it and it didn't work. Then they go, oh, we'll try this. Let me wait. You didn't know the first time that that wasn't right. Like, you know, like, so you need a person that I'm an artist first appointment with Addy was an hour long. You went in, you sat down in a chair, like a person with your pants on and had a conversation explained everything that had ever happened to you in your entire life while this person takes wild notes and is paying attention to you, and then orders your problems and says let's start here. And we're going to do this. And after this amount of time. If this doesn't happen, we will do this. If that does work then great. And like there was a real plan. And I don't think people leave doctor's offices with plans.

D.J. 53:54
No, but that's the way it should happen. Yeah,

Scott Benner 53:56
it's just it's obvious, right? So I don't understand if doctors can do it and they can get paid. Why is that? Not what is happening? I don't know. It's upsetting to me. Listen, I have a whole life off of this podcast. Like this is what I do all day long. 6070 hours a week, right? It pays my bills. It helps people it's a job. I love it. All. That's terrific. That being said, it should not be necessary. It's It's upsetting and insulting that you helped your health with a podcast. That's my stance on it. So anyway, yeah, but

D.J. 54:35
but the good news is this. This integrated health. He's actually a PA. He listened to your podcast.

Scott Benner 54:44
Well, hello to him, of course. Thank you. Yeah, I'm not and by the way, I hear people sometimes say i Dr. Bash, listen, this is what's happening. I'm just saying it out loud. I'm not bashing you. You don't I'm saying like if you drop back on Sunday, and throw 34 My past isn't complete five, boom. If I point out you had a bad day, I'm not bashing you. I'm just reporting the news. Well, here's

D.J. 55:06
the deal. If you take your car to a repair facility, and they consistently Miss diagnose it and can't get it right, at some point you go, you know, I probably shouldn't go to this place anymore. Yeah,

Scott Benner 55:17
and by the way, telling a friend about that it's not bashing somebody bashing somebody, it's just buyer beware, yeah, if you hear this, and you're a physician, and you feel attacked, I'd say look in the mirror, you know, so don't blame me. For God's sakes, I didn't do it. I'm out here helping all the people you're not helping. And you know, and by the way, with with a sentence, nothing you hear other Juicebox Podcast should be considered advice, medical or otherwise, like that, like that's the only thing standing between me and not saying this out loud is that the world now accepts that as okay. Like, even 10 years ago, that was not a thing. There's something about how information is shared now, something about podcasting, and digitally, being able to record your voice or your your image, and sharing it with people. And being able to say like, this is just my, this is my experience. I'm sharing it with you. I don't know what's gonna happen. Like, it's, I'm not a doctor, like lead me out of this. But even that didn't exist 15 years ago, like, seriously, like, people wouldn't have talked like this 1015 years ago, 20 years ago, you wouldn't have told a person on the internet your name, right? Yeah. So things have shifted very quickly. And it's allows for this transfer of information. Anyway, I don't know what the hell we're talking about these. But you sound healthy as hell. Why are you on the road so much?

D.J. 56:50
Well, so I actually live in a town where I don't own a business. And so my, my, the first business that I bought, several years ago, was at the coast in North Carolina, which is three and a half hours from home. And then I bought another business that's halfway home. So about an hour and 30 minutes from home. And so I am usually at the coast, Mondays and Tuesdays and then this other spot on Wednesdays and Thursdays and then back home, on the weekends. And then sometimes we reverse it. And I actually was supposed to have a meeting with my bank this morning. And so I'm actually at home. And my family is all at the coast. And so when we finish, I'm going to drive down there and, and hang out for the weekend at the beach.

Scott Benner 57:45
DJ, you're what's known as a go getter.

D.J. 57:50
I try that's a hustle, man.

Scott Benner 57:51
You're hustling. It's hustle. Yeah, no kidding. Jeez, I either. That's terrific. I mean, just the idea that you saw a business, you're like, This is a good business for me to get involved in. But it's three and a half hours from my home. Like, that doesn't matter. Wow, you wouldn't have done well, not getting your diabetes in order.

D.J. 58:09
That's what I was saying. Yes. I mean, it it had the opportunity to crumble the whole thing. Yeah.

Scott Benner 58:14
Actually, when you said that at first, I thought you meant your health, but you meant you meant life in general my life. Yeah. Yeah, that's, that's, and I think that's happening to people, by the way. It

D.J. 58:26
is I see it online. I you know, and I don't have tons of time, and, you know, but But I, I respond to people in various groups. And, and, and like, you look at, after you sort of clicks for you, you know, like, I'll look at somebody's graph, and they're like, this happened to me for absolutely no reason. And it's like, that's not true. Everything happens for a reason. There's, you know, I mean, I had a situation last night I, I rarely, I rarely am over 130. My average for 90 days, I'm looking at the graph right now, my average for 90 days is 94. So I'm in range. My range is 65 to 125. And I'm in at 97% of the time, Wow, that's great. But, like last night, I totally missed, and I was eating dinner with my daughter. And I looked and I was like, I was already halfway through eating. And I was 64 arrow straight down. And I said can you I said I hate to ask you can you go get me half a glass of regular Coke. And by the time she got back, the numbers shifted again and it was 40 straight down. Wow. And, but I didn't feel it. You know like Normally, like my lips will tingle or something like that. And so, anyways, within 20 minutes, I just mismanaged it. I was 157 arrow up, straight up. And, you know, brought it in for landing, and kind of reflected back on what I had missed, once it finally leveled out. And, you know, I had just mostly what I was eating was protein. I've already told you that. And I just Bolus too soon. When it dropped, then I just my reaction, I didn't know how, you know, I was guessing that there were 60 grams of carbs in that coke. And, and then I just missed it on the way up. Yeah, you just over

Scott Benner 1:00:43
compensated? Yep. It absolutely happens. But like you said, that's a thing, where some people could see that and say, I don't know, it just happened. And you know, in their last I, I've gotten a couple of comments or questions recently from people online. And they are saying the same thing. No matter how far I Pre-Bolus my kid every time I Pre-Bolus them, their blood sugar shoots straight up. And you can tell by the way they're asking the question, they are positive, that giving the kid the insulin is making their blood sugar go up. They don't see the part where the kid might be nervous or anxious, or a bunch of adrenaline comes, or even they get super excited to eat and their blood sugar shooting up now for adrenaline. And I say to them, I think that's what you want to look at first here because giving yourself insulin doesn't make your blood sugar go up. Like that's but that's how they see it. They are sure that the introduction of the insulin is making the blood sugar go up like that is not what's happened. Yeah, that's not what happened. Yeah. And but, but I don't know, there's a lot of different ways to say it. But that's what they see. They can't see the forest for the trees without it right like that. Yeah, yeah, yeah. And so I've learned instead of telling them that because they'll push back, they'll go, no, no, that can't be it. Like, okay, my kids rock solid or something, you'll get something like that. I'm like, no. Okay. I've learned to just say that's not enough information to answer this question, right? Because I need to get them to pick through the information in their own head so they can start checking things off the list. Like, oh, it's not that it's not this, it's not that, then you can kind of like introduce the idea of maybe the kids just, like, doesn't like to get shot us? Yeah, doesn't like to get a shot. Yeah. And then they'll go, maybe that is it. So, you know, and there's an answer to that? And the answer is the answer I gave you through the podcast, which is after time and experience and repetition, that'll get better. It

D.J. 1:02:45
will Yeah, it definitely well, and there's, I think that's the big thing for me is the recognition that there's, there's a there's a hope out there for for it by trial and error. And if you can actually learn from the trial and error. And, you know, I mean, it's just one of those, it just takes time, and it takes time, it really just takes time. It's

Scott Benner 1:03:11
it's a thing you can't give up on right away. It's a thing you have to build on the take a little wind, and you're piled on top of another little win, and you take a minute to celebrate, and then you realize that's not the end and you keep going. It's yeah, it's what's

D.J. 1:03:26
that? What's that saying that like? The thing that people don't see about the overnight success is the 30 years of hard work that went in before it or something like that. I don't know what the exact quote is, I

Scott Benner 1:03:36
know that when I don't know exactly what it is either I got. So I do a really good job, I think give myself credit. And I'm giving myself credit, because you all didn't know me when I was 25 years old. But I didn't. I didn't I had a pretty short fuse. So when the other day someone comes on to the, onto the group. And I put up I forget what it was, I noticed people were asking questions about the eyelet pump. And they were all like, what is this? And I'm like, I just did an exhaustive interview about this like a month and a half ago, and it's irritating that they don't know. So I just put up a nice post. And I'm like, Hey, here's this I hear people talking about, you might have missed this, like all very nice, you know, like, you don't know, I'm irritated. And by the way, I'm not really irritated. It's, you make this thing and you put it out. And if you're not careful, you can get this unreasonable expectation that everybody knows it's there and that they've heard it. And so I just I know that's not true. So I'll put the information back up, hopefully find some people that missed it. In that thread. Some guy comes in and says, you know, some people don't have time to sit through all this, especially with all those ads. And I was like you Mother I am over here, make those ads, pay my bills. Without the ads. You don't get a podcast. And you know, or I charge you for it. And by the way A DJ between your business person between you and me if I charged $9 a month for this podcast, and everybody who listened to it, like paid it, I'd be sitting on a gold chair in a gold room right now. And I don't do that. So, in my mind, I think, just say thank you. Don't come at me go and I don't like it. Meanwhile, I went and looked at it. And I so I anyway, I held myself together. And I explained nicely online. And I said to the guy, I'm like, Look, man, there's about two minutes worth of ads at the beginning of the podcast. There's another ad in the middle. And there's a thank you at the end. That episode is two hours long, it has about seven minutes worth of ads in it. Like, if the ads aren't there, then here's the thing you don't know. It took me days to reach the company, like days to reach them to book that episode. Then once I booked it, they were uncomfortable. They didn't know what they were doing. I had to walk them through it. Then I had to spend an hour on the phone with somebody explaining microphones and getting them to buy a microphone. And then they came on. And I spent two hours recording the show. And by the way, all the questions I asked, there was prep time in there that I can't really quantify. Then the show had to be edited. It took two and a half or three hours to edit it. And then it has to be supported on social media. And then you bobble and I'm like going through it. I'm like, That's the effort that went into that episode.

D.J. 1:06:24
Yeah, that's just one episode out of where you're at. 1000. Yes,

Scott Benner 1:06:29
yes. What I ended up saying at the end, the only place I think I was a little snarky, is I said that. This is the equivalent of me showing up at your job on Pay Day opening the front door and yelling blank doesn't deserve to get paid. I don't like the way you went about it this week. What do you care man? Like, you know what I mean? Like, there's no one else delivering this information to no one. It just it doesn't exist the way I give it out. And it's because it's supported through this thing. How could you possibly not see that? And then I realized none of this matters. He doesn't know. Like you don't even but it got me for a second. I was like, What the hell? Yeah, leave me alone. So anyway,

D.J. 1:07:08
yeah. It's like, hey, you know what? We'll give you free fries with this. And then you're like, I don't really like those kinds of fries. Oh, yeah.

Scott Benner 1:07:17
Could I instead have the hashbrowns?

D.J. 1:07:18
Yeah, can I smash?

Scott Benner 1:07:21
Well, no. Because of 1000 things you don't know or understand that go in free podcasts, shut up and take it. Adult, what do I care? But then that that becomes the problem is that I actually, I do care. Like, I look at that person, I think that person has type one diabetes, I get it. Yeah, they need the info, right. And even if he doesn't know it, I'm doing something good for him. And listen, I'll make this point. And I'm gonna have to let you go. Because I, I actually have, this is the day from hell for me. So this is the first of my three recordings I'm doing today. But I won't give a lot of details. But a different person online, popped into this post and just started, what they call posting. And, you know, was just being difficult for the sake for just to be difficult, and kind of going back and forth with people. And I looked and I thought this person has been in this group for years, they've never been a problem like this is really strange, you know. And so I pulled their comment down. And I sent them a note that said, I really need you to be nicer than this. You know, now, my assumption was something was wrong. Because as a person who runs a big Facebook group DJ, what I can tell you is either somebody's having a bad day, or their blood sugar's high or low, or they're drunk. But that's pretty much what I've learned. And so are they just want to be, you know, for reasons I don't know. But I really, I just gave this person the benefit of doubt. I said, I can't leave your comment there. But like, what's going on? And I got this note back, and privately, and the person said, I'm sorry, I have multiple people in my family having medical issues right now. And one of them's out of state, and I can't be there. And it's an I need to deal with my frustration differently. I apologize. And so in my mind, EJ, everyone's got a story like that. Even though even the person who said to me like all the damn ads, just tell me what I need to know like, well, first of all, I'm not your mom. But secondly, like, you know, like, I even think that person is just having a bad moment. And so I don't want to ever get into a position where they get kicked out of a group because then they're going to come around and still need to know how to Pre-Bolus or something like that. And then I think they could be then on that path that you described that you possibly could have been on, of course, Yeah, everybody's got a backstory. Yeah. So I try really Hard not to have my own feelings that you don't mean like to be my own, like frustration. But they're like I said that one. That's the one time the only time I can really remember this year, I was just like, I am killing myself over here. And that's what you want to say to me. Like, please do not build, please don't say. So anyway, did we cover everything you want to talk about?

D.J. 1:10:22
I think so. Yeah, I think it's been great. I mean, well, I don't know if it's been great. But it's been great. Actually talking to you and, and getting a chance to do this. It's been a lot of fun.

Scott Benner 1:10:30
I appreciate that. It's terrific. It's great information. Like I said earlier, your microphone is so good. This is such a pleasure to record from just an audio standpoint, I really appreciate that. Are you? Do you want to tell people why you have the microphone? Like because i'll leave it in if you want to say, but if you don't, then it's okay with me as well.

D.J. 1:10:50
Yeah, I mean, my my daughter is a pop singer. That's sort of on the on the coming up. And I'm in her studio right now. This is actually her scratch vocal mic that she uses to track some of her scratch vocals. And then she's got a booth on the other side of the room. And she does. I think I said pop music and it's super exciting. Her name is Emerson as Aryan and you should check it out. It's everywhere where you can stream pop music, very

Scott Benner 1:11:25
nice. Excellent. Well, listen, you tell your daughter that if she wants to send me a song, I'll put it at the end of this episode.

D.J. 1:11:32
Oh, that'd be awesome. Yeah, I'll, I'll I'll definitely do that. I'll send you one. With her permission for sure.

Scott Benner 1:11:39
Oh, that's cool. Let me know. Okay. Okay. All right. Thanks, Scott. Of course, hold on one second for me.

Huge thanks to a longtime sponsor touched by type one, please check them out on Facebook, Instagram, and at touched by type one.org. If you're looking to support an organization that supporting people with type one diabetes, check out touched by type one. Today's episode of The Juicebox Podcast is sponsored by the Dexcom g7 Which now integrates with a tandem T slim x two system. Learn more and get started today at dexcom.com/juicebox. A huge thank you to one of today's sponsors, G voc glucagon find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox you spell that G VOKEGLUC AG o n.com forward slash juicebox. Here's a little treat for you for staying till the end. This is DJs daughter Emerson is Aryan and the song is called if it's all right

Unknown Speaker 1:13:07
I'm Bucha lipofilling.

Unknown Speaker 1:13:46
Good seven in the baggage.

Scott Benner 1:14:51
If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast tie 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. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1140 Cold Wind: Healthcare Whistleblower CDE and Dietitian

“Susan” is a type one diabetic, the mom of a type one, a CDE and also a dietitian. Her voice and name have been changed to protect her identity.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 1140 of the Juicebox Podcast

Welcome back to the cold wind series. Today we're going to call our guests Susan. Let's see Susan is a type one. She's the mom of a type one, a CDE and a nutritionist. And unlike some of the cold wind episodes that you've heard so far, she's not here really so much to blow the whistle on the doctors as she is the Bloat on the patients. 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. 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 juice box at checkout to save 40% at cozy earth.com You can make a significant impact on the future of diabetes healthcare, treatments and technology by participating in the T one D exchange registry. It starts with just a simple online survey about your life or your loved ones life with type one you can only takes 15 minutes, T one D exchange.org forward slash juicebox US residents only. You need to be a type one yourself or the caregiver of one. When you fill out the form completely. You are supporting not just people with type one diabetes, but the Juicebox Podcast as well. T one D exchange.org/juicebox. This episode of The Juicebox Podcast is sponsored by the insulin pump that my daughter wears Omni pod. Learn more and get started today with the Omni pod dash or the Omni pod five at my link Omni pod.com/juice box. This episode of The Juicebox Podcast is sponsored by ag one drink ag one.com/juice box. When you use my link and place your first order, you're gonna get a welcome kit, a year supply of vitamin D and five free travel packs. Hello and welcome to the cold wind series from the Juicebox Podcast. These episodes will feature physicians, nurses and other professionals who agreed to come on the show anonymously to share what they see in the healthcare profession. I've altered the voices of each guest so that they can remain anonymous, and feel comfortable telling us what really goes on at their job. Just listen to how well the voice alternative works.

Speaker 1 2:44
My name is Beth and my oldest child has type one diabetes diagnosed in October 2020. My name is Beth and my oldest child has type one diabetes diagnosed in October 2020.

Scott Benner 2:56
If you work in health care and have a chilling story to tell about your experiences in the healthcare field, contact me today. I'll get you right on the show. Your story does not need to be specific to diabetes. So we're going to make another anonymous episode today. So we have to first pick your anonymous name.

Anonymous Female Speaker 3:19
All right, let's go with Susan.

Scott Benner 3:21
You don't want to say what you said before we started recording.

Anonymous Female Speaker 3:25
No, I'll just play nice.

Scott Benner 3:27
Why did you used to have a fake name? Because I used

Anonymous Female Speaker 3:30
to use it to get into bars when I was under age.

Scott Benner 3:33
Okay, Susan. So, let's just start off by telling people what do you do for a living?

Anonymous Female Speaker 3:43
So I am a Registered Dietician certified, certified diabetes educator working in Canada. Oh,

Scott Benner 3:52
oh, this is gonna be so good, isn't it? And a dietitian. It's okay. If you don't want to say but are you willing to tell me what province you're in?

Anonymous Female Speaker 4:04
I mean, Ontario. Okay.

Scott Benner 4:06
Should I have said Provence? Would that have been better? No provinces, right. I know. It's right. But that's not how you guys said.

Anonymous Female Speaker 4:13
Well, I say province.

Scott Benner 4:14
Alright. Look at you trying to be fancy. I gotcha. So you are a CDE? And a dietitian. This is perfect. Yes. Tell me a little bit about what goes into becoming a CDE. Did you do it here in the States or did you do it in Canada?

Anonymous Female Speaker 4:29
I did it in Canada. And I kind of have a bit of a backstory. So I also live with type one. I was diagnosed at 26. My daughter was diagnosed at just about seven just before her seventh birthday back in 2013. Which kind of inspired me to change gears. I was kind of in a phase of my life where I was looking for what I wanted to be when I grew up. It was a bookkeeper. And I thought well, if I have to support her I might as well figure out how to make some, you know, some other people happy about what I have to say and helpful and value and value and all that. So I went back to school became a dietitian with the goal of being a certified diabetes educator here because it was kind of doing it on the fly anyway,

Scott Benner 5:16
how long does it take to become a dietitian?

Anonymous Female Speaker 5:20
Well, it took me a couple extra years, typically, it's a four year undergrad plus either a one year internship at a hospital or a one to two year master's program. So I had to go back to high school first to couple courses to get me qualified to apply for the program to become a dietitian, and then I did a one year master's. And then I went through the excruciating process of writing the exams. And then it takes takes another depends it takes about a year, if you get a job, right out of school in diabetes care, you have to mass anywhere between 800 to 1000 hours to qualify to write the CDE exam. So if you're not working in diabetes care, then it might take longer for you to really kind of collect all those hours, but I came right out of school into diabetes care. So it was pretty quick for me well,

Scott Benner 6:12
so this indicates a sincere desire to do this. I mean, you had to go back to get like high school credits just to get to, to the college credit suite. And that's a lot of work and tell me you were already a type one when your daughter was diagnosed, right? Right, or about how long? Like 13 years, I'd say 13 years type one, you have a daughter, boom, little diabetes there. You're not just a type one, not just the parent of a type one. But as somebody who said, I want to go do this professionally and then had to put a great amount of effort into making it happen. Right. Okay. That's a fair statement. Okay. So let's start with what was your experience like with your health care prior to your daughter's diagnosis prior to you being in the business? What how would you describe it to somebody looking backwards. Taking care of your health isn't always easy, but it should at least be simple. That's why for the last three years, I've been drinking ag one every day, no exceptions. It's just one scoop mixed in water once a day every day, and it makes me feel energized and focused. That's because each serving of ag one delivers my daily dose of vitamins, minerals, pre and probiotics, and more. It's a powerful, healthy habit that's also powerfully simple. Before I was taking ag one, I would get that brain fog in the middle of the day, and I just couldn't seem to get on top of it. But now that doesn't happen anymore. By starting my day with ag one I found focus and a renewed ability to perform at my highest level all day long. Drink ag one.com/juice box. When you use that link, you're supporting the production of the Juicebox Podcast. I drink age you want in the morning, but you could use it as a coffee replacement before workout or in your smoothie. If there's one product I had to recommend to elevate your health, it's a G one and that's why I've partnered with them for so long. So if you want to take ownership of your health, start with ag one try ag one and get a free one year supply of vitamin d3 k two and five free ag one travel packs with your first purchase exclusively at drink a G one.com/juice. Box. That's drink ag one.com/juice box, check it out. Today's episode of The Juicebox Podcast is sponsored by Omni pod. And before I tell you about Omni pod, the device, I'd like to tell you about Omni pod, that company I approached Omni pod in 2015 and asked them to buy an ad on a podcast that I hadn't even begun to make yet. Because the podcast didn't have any listeners. All I could promise them was that I was going to try to help people living with type one diabetes, and that was enough for Omni pod. They bought their first ad and I use that money to support myself while I was growing the Juicebox Podcast. You might even say that Omni pod is the firm foundation of the Juicebox Podcast. And it's actually the firm foundation of how my daughter manages her type one diabetes every day. Omni pod.com/juicebox whether you want the Omni pod five, or the Omni pod dash using my link lets Omni pod know what a good decision they made in 2015 and continue to make to this day. Omni pod is easy to use, easy to fill, easy to wear. And I know that because my daughter has been wearing one every day since she was four years old, and she will be 20 this year. There is not enough time in an ad for me to tell you everything that I know about Omni pod, but please take a look. Omni pod.com/juice box I think Omni pod could be a good friend to you. Just like it has been to my daughter and my family.

Anonymous Female Speaker 10:00
Personally, I would say that I didn't prioritize self care. So I really wasn't a very regimented diabetic, I didn't really do a lot to benefit my own health and welfare, I kind of half assed my way through things. I wore an insulin pump, I went to all my checkups and doctor's appointments and that sort of thing. But, you know, I went through the whole thing about making up all my blood sugars and telling stories out of school about what I was doing in terms of diet and exercise, and that sort of thing. So it really wasn't until my daughter's diagnosis that I paid attention to diabetes.

Scott Benner 10:39
So that's a classic story. Really, honestly, I hear it from a lot of people. But let me make sure I understand it. Because in fairness, the physicians and doctors and nurses and everybody else we're going to be talking about today, you would go in there lie about the numbers, lie about your diet, and lie about your exercise. Yeah, pretty much. Do you think now using the eye you have now being a CD? Is there any way they believed you? No. No, no chance. Back then. Did you think they believed you?

Anonymous Female Speaker 11:12
Yeah, back then I thought it pulled it off pretty well.

Scott Benner 11:14
What were your agencies while this was going on? Oh, anywhere from 10 to 13. You were telling them about a person who's doing better than you were doing? And then showing them the results of a person who was doing what you were doing?

Anonymous Female Speaker 11:25
Of course, yeah. I had no idea. I didn't understand the connection back then. Oh, okay.

Scott Benner 11:30
So you just thought they were like, Oh, right on so So did you know that that's not the agency you wanted? Yeah. Oh, yeah. Okay. And so I

Anonymous Female Speaker 11:39
had all of the information I knew, you know, I knew how to eat properly. I knew about the potential consequences of diabetes. I started it was it was also a lot for me a personality conflict, because my nursery school report card says that I don't take authority. Well, like I don't deal with authority figures. Well, right.

Scott Benner 11:59
So they figured that out when you were three.

Anonymous Female Speaker 12:03
Probably, you know, one of the worst people this could happen to you, because this is a disease where everybody's telling you what you have to do all the time, right, including the disease itself. So I had a lot of issues with personality conflicts were back in that day, everybody was using fears, you know, scare tactics and, and trying to motivate you by fear. So I would walk in and they have a blood sugar of 12 when they were testing me as I was coming in, and all of a sudden, they're like, you're gonna die, right? Well, that doesn't motivate me, it turns me off. And so I went through four or five different endocrinologist before I found one that matched with me and could work with me and understands kind of like what I need to motivate me and inspire me to do things differently and took the time to educate me and that kind of stuff. So it was it was, it was a long period of, you know, many different twists and turns in my journey to kind of get to where I am today,

Scott Benner 12:57
when you realized you were going to offer to be on this episode. Did you know you were going to be making both sides of the argument? I usually always do. Okay, because I mean, this is this is fantastic. Because I'm assuming that what you tell me later about the professional side of this, it's going to make people harken back to what you said about your time as a type one prior to being you know, the mother of a child has type one as well. So, so you are you are in I hate the wording but you're non compliant at that point. Yes. Okay. Did you think you were Oh, I knew I was okay. But you didn't care because fill that blank. And I

Anonymous Female Speaker 13:35
didn't care because it's kind of like that. It's not going to happen to me mentality and with you know, I mean, obviously, this has a lot of perspectives from what I'm doing now tied into it, but nothing was wrong with me then I didn't feel anything and nothing was different for me. I didn't you know, like when I was diagnosed? Yes, of course, I had like the frequent urination. I had the intense thirst and I had those kinds of things, which made me go to emerge. I was diagnosed, I think at like, 33. Which times 18 would be what for us numbers at all. I'm on my phone. So if

Scott Benner 14:04
you want to do it, I guess I would look on my website because it's easier that way.

Anonymous Female Speaker 14:09
Yeah, so I just usually might use my calculator, but that's like 594 milligrams per deciliter. So when I was wheeled in, the triage nurse was like, oh my god, I can't believe you're not being wheeled in here in cardiac arrest. Welcome to diabetes. Nobody in my family has a history of it. Nobody knew anything about it. It was totally new. So, yes, of course, I knew that I was really annoyed that the first thing that you know, my first introduction was that way. And then of course, I have some like 89 year old physician telling me to eat crackers and drink soda pop, which clearly was not the right approach. And it took me a while to find the team that I kind of clicked with. But I still knew that I wasn't doing things properly. I still had all of the information about targets and anyone sees what that meant. And there was no time and range back then. And it was all like you have to buy a mini fridge and have it by your pillow so that you can eat at eight o'clock. 10 o'clock, 12 o'clock, four o'clock, you have to have 60 grams for carbs at meals you have to this, this this this this right. very regimented, which was against the grain for me in every possible way. I would go in and say, you know, I went I actually went on an insulin pump, because I was not giving myself any insulin at all.

Scott Benner 15:28
So, so you wanted at least the Basal. Yeah, right. And before

Anonymous Female Speaker 15:33
looping before all of this now, we're not waiting kind of movement, technology and all that kind of stuff. I would actually adjust my Basal rates based on my regimented eating pattern, because I just got to a point where I was eating the same food every day at the same time, because I didn't want to think,

Scott Benner 15:47
to you are jacking your Basal up to cover your food. Right. That's the thing you came up with on your own. Yes,

Anonymous Female Speaker 15:54
and I didn't Bolus at all. So which is like, do as I say not as I do, right? Totally not the way that come about

Scott Benner 16:02
it. You would get low if you forgot to eat. Right. Okay.

Anonymous Female Speaker 16:06
But lows didn't scare me.

Scott Benner 16:08
Did that happen? Yeah, I would have lows. Yeah. But they didn't scare me. But this this plan was also just basically keeping you in the tents. Right? Okay. Got it. Got it. Okay.

Anonymous Female Speaker 16:21
Because I also was like, I'm a carb lover, I have a sweet tooth. I you know, I'm, I'm all about convenience. I hate cooking. So anything that I can buy that's packaged, refined, or full of greasy cheese, and pepperoni and carbs was my life.

Scott Benner 16:38
Gotcha. Okay. And you ride like that. 13 years.

Anonymous Female Speaker 16:44
Yeah, give or take. I mean, I had moments I got pregnant. When I was pregnant, I was very regimented. My agencies were like 6.1, which is a mind blower for most of my endocrinologist who keep telling me to just be pregnant the rest of my life. This

Scott Benner 16:57
also fascinates me when this happens. So you're able to hear a person say, If your agency is not in the low sixes, high fives, you're gonna have an unhealthy pregnancy, it's not good for the body for this table, and c to be like this. And so for another person, by the way, a person you've never met before, you're able to do it. But then the minute the baby comes out, and it's on you, we go back to like just putting the Basal and we'll go to 10.

Anonymous Female Speaker 17:20
Of course, and it will seem like back in that day, I was smoking and drinking and we you know, same I would quit on a dime. And never have another smoke didn't think about it didn't crave it didn't nothing. But as soon as the baby was out, right back to it, which makes even less than so

Scott Benner 17:36
it makes it I mean, it tells the entire story. But you are gonna go this way forever. But your daughter's diagnosed. And tell me what you thought. When she was diagnosed? Well,

Anonymous Female Speaker 17:48
it wasn't an instantaneous thing. So a few different things happen when she was diagnosed. First, there was a lot of different kind of pressure, because I got like, oh my god, I wouldn't wish this on anyone. But at least it was happening somebody that's happening to you, because you're the expert, and you could fix it. So that was a huge weight on me, because I wasn't diagnosed in childhood. And there's a lot of things that happen in childhood that don't have didn't happen to me. And I had no idea what the hell was going on, aside from just the basic fact that every one has a different experience with diabetes. So it doesn't matter if we're doing the exact same thing. Her career experience is going to be different than me, right. Also,

Scott Benner 18:29
I'd say that anybody who looks at somebody with a 10 a one saying goes, you're an expert at this as being generous to begin with.

Anonymous Female Speaker 18:35
I also did not let people in. So nobody knew. Oh, you

Scott Benner 18:40
were alive and had diabetes. So they thought you were an expert at it. Yeah,

Anonymous Female Speaker 18:43
okay, I got it. So I didn't go into detail with anybody in my life, because I just didn't want anybody on my back. Right. So that was that. The other thing was when she first started, this is when I dove headfirst into everything, diabetes. So I joined all the forums, I joined all the groups, I started looking, you know, looking for networks for all this kind of stuff, including Juicebox Podcast, right? To make sure that I got all the information so that I knew everything because this is now about my child. This is not me, right? So then it was kind of learning Yes, but she was still in those beginning stages in Canada, you have to be on multiple daily injections for a year before you're considered for pump therapy. And of course, like she gets diagnosed, and I'm like, hi, where's her pump? But you know, she's got a bit of the honeymoon phase going on. And so they can't really get her on a pump right away, all that kind of stuff. And then it started to kind of evolve where she would start looking at me like how can I have to do this noodle? Oh, and at first I'm like, Well, you know, I have a pump so it's different, or I wear a sensor so it's different. I don't have to poke my fingers all the time because I have a sensor that tells wasn't enough. So I could get away with it for a little while. But then it got to a point where it was like, I can't fake this anymore. And I now need to be a role model and an example if I want her to live and be able to walk and see and feel and, you know, have a functioning pedigree as well into her golden ages.

Scott Benner 20:19
So but you were still not concerned about yourself at that point? No,

Anonymous Female Speaker 20:25
I'm still not to be that

Scott Benner 20:27
you know that some? Probably some light therapy would help you figure out why this is right. Oh, listen, I've

Anonymous Female Speaker 20:34
been in therapy for years. Okay.

Scott Benner 20:35
Do you know why you don't? You're not concerned with yourself? Well, I

Anonymous Female Speaker 20:40
mean, as I'm sure you know, diabetes is very closely related or connected to depression. So there's some depression happening. There's also the defiance, there's denial, there's, you know, the mental health side of diabetes that plays heavily into my my health and wellness journey, right, gotcha. Okay, which was also a really big push or motivator for me to get into diabetes care, because I have experienced that for so long. And I understand that side of diabetes from a very personal lived experience, right? Yeah. So I mean, I do the best I can. And I counsel a heck of a lot better than I apply all of those suggestions, guidelines, you know, techniques or whatever to myself. Sure. But I'm always gonna go above and beyond for people that I care about my kids being number one. So because of her diagnosis, I got into looping I built my own pancreas, I tested it out of myself and then built one for her, we got her into looping my agency in a month dropped from 13.9 to 7.3. That automated everything and relieve the burden for me so much so that I could then focus on figuring out how to provide her with the same benefit. And kind of pushed me into going back to school because again, I was kind of at this time in my life where I'm like, this is you know, bookkeeping is not exciting. This is not what my plan was, and what do I want to be when I grow up? Her diagnosis was kind of like, the light bulb, right? Okay. When she was diagnosed, and I dove in, I was helping people I was in the CGM and a cloud Forum, which is now 60 plus 1000. Strong, which is the automated pancreas before the AI D Systems came available to market and I was I was in it, I was eyeballs deep. And people started to say, like, why aren't you doing this in a professional capacity? Because you have, you can come at this from so many different perspectives, that is so helpful, aside from just the bonus of when I'm talking to somebody, they actually know what I'm talking about. It's not just the health care provider that's going by the books. They're talking from experience, they really understand what I'm saying I'm having a low what it means it's not just oh, well go off and have your three Dexcom dextrose, or glucose tablets, right?

Scott Benner 23:14
This is what motivated you to get into it. And take care of it. Professional, right. Yeah. But it's yes, it's still it's, I mean, I'm gonna get past it. But it is most impressive to me that you still did it, because it would not be uncommon. I mean, parenting is something that happens all around all of us every day long. And there are plenty of adults who make decisions that hurt their kids. Yeah, both short term and long term. And you seem ripe to be one of those people. But then you weren't like as soon as it came to her. You were like, Okay, well, now I'll do it.

Anonymous Female Speaker 23:50
Oh, I am like a model. There. I am. The definition of Mama Bear

Scott Benner 23:54
is Susan did you just turn your stubbornness in a different direction? Yes.

Anonymous Female Speaker 24:00
That's a great way to play. I

Scott Benner 24:01
know what's going on. Trust me, I'm married. So I see what's happening. But that's really something because you could have doubled down and been like, you could have said, Look, I've had this for 20 years. I'm still walking around. She'll be fine. I'm gonna keep ignoring this. Yeah, I could have then do you have any long term complications?

Anonymous Female Speaker 24:23
I have. I have mild.

Scott Benner 24:26
Yes. I was gonna say not neuropathy. Your guests are praised. This is where I was headed. But ya

Anonymous Female Speaker 24:32
know, I have mild neuropathy that's affecting, like grip strength in my hands, but nothing that prevents me from doing anything. You know, normal. Did

Scott Benner 24:42
you notice that that go backwards or stop progressing worse when you got your a one season? More control?

Anonymous Female Speaker 24:49
It's pretty recent. So not sure. I mean, she's had she's had diabetes now for 10 years. So this issue that I'm having, it's pretty recent. I'm gonna say it's probably big was all the years leading up to her diagnosis that I just sure didn't care. Yeah. And it's showing up now,

Scott Benner 25:06
I'm going to ask you to guess it's something that I don't know how you could actually do this, but I'm still gonna guess anyway. No kids come ever, but you get neuropathy. Do you think that slows you down? And you go, Oh, geez, something actually happened. I got to take care of myself. It

Anonymous Female Speaker 25:20
might I might have got you it might not as much as not as much as my kids being affected by it. Gotcha.

Scott Benner 25:27
It almost wasn't the affected part. It was the part where she calls you hypocrite. That's what got you right? Yeah, yeah. Then I saw that was interesting. Okay, I appreciate you telling me this. This is all incredibly interesting. Now we're gonna fast forward, and you have a job now, and you're doing the job. Right. So what could your healthcare team have done for you? If anything? All that time, you weren't paying attention?

Anonymous Female Speaker 25:56
It's a good question. Because, you know, I don't I can't guarantee that if they did what I'm about to say that it would have made the difference. I'll

Scott Benner 26:06
tell you what, that's incredibly telling. Because you're talking about yourself. Yeah, you're still not sure. But go ahead. What would the best course of action be?

Anonymous Female Speaker 26:13
I think, you know, if you have to meet people where they're at. So if if somebody took a minute to make the connection, that I'm not afraid of needles, I don't have an adverse, you know, reaction to taking medications. I don't think insulin is poison. I, I'm a smart enough person to understand, you know, the science behind things. But nobody took time to explain anything to me. They just barked orders at me. And being somebody who doesn't do well with authoritative figures. That is like the complete opposite approach. Yeah, that would work with me, right? I didn't know why people were changing my doses. I didn't know what carb ratios were, I didn't like all of these things that were happening to me. I didn't understand. And I mean, the mental health aspect of diabetes back then was non existent. Okay. Nobody, nobody made that connection. I was in denial. I just didn't want to deal with it. I didn't want it. I didn't want to have to do all this extra stuff. I hated that it was interrupting my day. I didn't like that. You know, like, if I wanted to eat because I was hungry, I couldn't eat. I didn't like that I couldn't go stay over at my friend's house and not have to think about it. I like that I couldn't vote for a night of drinking and, you know, be afraid that I wasn't going to wake up the next day. So I almost dared it to happen.

Scott Benner 27:39
Because is that the depression? I think

Anonymous Female Speaker 27:43
that's yeah, it's the depression, I think, right? Yeah. And it's just, it just didn't, I don't know how to explain it. And this is part of where my issue is that I haven't been able to kind of weed through 100%. But it's kind of like, I don't know, whether it's worth it. Like what's so exciting about life that really wants that really makes me want to put all this extra effort in and this is back then. Right? Because I didn't have kids and I wasn't married and all that kind of stuff. So I mean, I wasn't I was living a good life. I was fine. I had a house, I had a car and was traveling, whatever. But I didn't really have anything super exciting to do all this extra work for

Scott Benner 28:25
right or the mundane parts of life just difficult when you're depressed. Yeah. Okay. That means they're difficult when you're not depressed. So I'm trying to imagine if there was a voice in your head, not literally a voice, but but a feeling that is just like, Oh, why are we doing all this? Then? Yeah, it makes sense that it's harder. Okay. Yeah.

Anonymous Female Speaker 28:43
Yeah. So I think, you know, back then, because that wasn't part of care. I mean, now, we're still struggling up here to get mental health support as part of the care team, the circle of care. There aren't enough mental health professionals that are knowledgeable about especially type one diabetes, and, you know, even just, you know, regular mental health support people who are qualified to provide mental health care. If you don't really understand the world of diabetes, it's almost pointless, right? Yeah, it's

Scott Benner 29:15
more difficult. Can I ask you, were you depressed prior to your diabetes diagnosis?

Anonymous Female Speaker 29:20
I don't think I was depressed, but I don't know necessarily that I was happy. Like I had, I had some, you know, traumatic events happened in my childhood, nothing majorly serious, but you

Scott Benner 29:32
had to live in Boston. I'm just kidding. I'm just

Anonymous Female Speaker 29:37
I mean, part of that was was real, right? Like, the the everybody says, everybody in Canada is so nice, right? And it's actually true. Like, I got bullied when I was young in Boston really bad. And it set me up for you know, expectation, unrealistic expectations of relationships, and it you know, like it impacts Did everything that happened after the fact when I came to Canada, I was expecting everybody to be the same. And I was the asshole, right? So I came and I was like, tried to take on this bully mentality. And I'm not going to let that happen to me again, and I'm going to be the one that's gonna and then I got bullied, like almost the opposite way where nobody wanted to have anything to do with me, rightfully so. Yeah. So then it was really hard to make friends. And so all that kind of stuff was hard. And then I was diagnosed, here in Canada, I'm trying to think of, you know, it was kind of during this whole time where, so I was going out a lot younger than like, I was 16. And I was going out, and I was partying and drinking and doing all this kind of stuff. And I had an older boyfriend. And so I was well into that kind of phase in my life when I was diagnosed. And I was going to work and people thought I was hungover because my blood sugars were so high that I was literally falling asleep. Yeah. But they don't know anything about diabetes, either.

Scott Benner 31:03
So you were on the wrong path when the diabetes came, right.

Anonymous Female Speaker 31:07
And then all of a sudden, now I like I moved out of my house when I was 16. So I had been independently doing my thing for quite a while, by the time I was 26, and getting diagnosed. I had gestational diabetes when I was pregnant, but then it went away. And almost five years to the day was my diagnosis date for type one. So it came back with a vengeance. And then all of a sudden, it's like you're gonna come into my life and disrupt my entire program, and take away or potentially or threatened to take away. The only things left that that bring me joy. Gotcha. Right, which is food going out and having a good time. Whatever. Yeah,

Scott Benner 31:45
no, I hear and you didn't like your job. And you already kind of had that feeling like I don't know if this is all worth it to begin. It's a lot of effort to be alive. kind of feeling.

Anonymous Female Speaker 31:54
Yeah. Yeah. I mean, I was I wouldn't say that I was suicidal, because I wouldn't try anything, but it was just kind of like, why bother, like, just let it whatever is gonna happen happen? Well,

Scott Benner 32:03
listen, I want to be fair, I don't think anybody whether or not they've been depressed or depressed or aren't depressed, hasn't on, you know, the end of a long day gone, like, what am I doing? This just happens over and over again, like you didn't mean? Like, yeah, we're, you know, I, my son was out of college for six months when he called me and said, like, what do people do after work? And you're laughing because it's funny, but I was sad. I was like, Oh, he just figured out that life's not like, a 24 hour party. He just figured it out just now,

Anonymous Female Speaker 32:36
I laughing because I had a similar conversation, I have a son who's 30. And when he was graduating school, I kept saying to him, like, come home, relax, enjoy travel, like, don't just think you're gonna get to sit on your butt. But wait for the job that you want, that's going to, you know, either open doors for you, or that's going to bring you some kind of happiness or make you feel rewarded or whatever, because you will rushing into a job just to make a couple extra bucks, you are going to hate life so much sooner, because you will find very quickly that it gets very repetitive, right.

Scott Benner 33:14
And I just love that. You qualified as you're gonna hate it eventually. But now it's gonna happen sooner.

Anonymous Female Speaker 33:20
Yeah, right. Because even if you have an awesome job, sometimes you just want to, like lay around for an extra hour, or you just want to go on a trip or you just want it like there's all this extra stuff. It's kind of like diabetes, but not as intense because you got to plan ahead, and you gotta do all this extra steps to just make things happen. Right? Yeah. So he just recently came back to me as well and said, like, is this it? Is this life? Like, I just get up, I go to work, I do my job. I come home, or the gym, am I dinner, go to bed, I get up and go to work and do my job? Like, Yep, yeah, that's pretty much it.

Scott Benner 33:56
That's, that's why I don't understand people who don't like sports. I'm like, what do they do? Like in their downtime? That's why people like I read, I'm like, okay, all right. So like, you know, like, begin, people have to have hobbies, if they have things to do. You know, I told him I was like, to be perfectly honest, that feeling once you have a family, if you care about your family even a little bit, that feeling completely goes away, because you don't even have time to have that feeling any longer. busy all the time. You're busy while you're sleeping. So you know. Yeah, but So, okay. Did you ask him if he was depressed when he came back to you and said that we've

Anonymous Female Speaker 34:31
had conversations about it? I don't know if I asked him at that point. But you know, he's had some issues with anxiety and stuff like that. So it could have been there. Okay, but we haven't had like a, like a direct conversation about that yet. Are there any autoimmune issues with your kids? Not that we know of, and they've all been for the predetermination testing and that kind of stuff. And she was the one that came back with two of the four markers and then a year after that she was diagnosed,

Scott Benner 34:57
ever have your tyroid checked or his, your 30 year old.

Anonymous Female Speaker 35:02
My I do have my medications for thyroid. I actually had thyroid cancer. So I had half my thyroid removed. Okay, where

Scott Benner 35:09
do you keep your TSH? I don't even know. Yeah, I so anxiety, depression, like mood stuff can come with like an unbalanced thyroid situation too. Yeah,

Anonymous Female Speaker 35:21
yeah. So he did have his thyroid checked out. And I do remember looking at his bloodwork, and it was within normal ranges because of the whole anxiety thing. He was freaking out. I think he just kind of has like a doom and gloom syndrome where he just is afraid of death. And then he spirals. Yeah,

Scott Benner 35:36
I would just look at the TSH because anything over two with symptoms, I think needs medication. Okay, well,

Anonymous Female Speaker 35:42
that's a good tip. Yeah,

Scott Benner 35:43
take that as an that's not a thing any doctor in Canada is gonna tell you. And if you're worried about it, by the time they get to you, it'll be nine months from now. Anyway. So Yeah, no kidding. Yeah. So let's talk about secure lucky. Let's talk about that. Do we all really want socialized? Medicine is a great?

Anonymous Female Speaker 35:59
I think there's benefits of both? I think it really depends on who you are. I don't know, it really depends. You have to be a huge advocate, you have to be confident you have to have a big mouth to really be able to get the best out of the healthcare system here in Canada. Why if you otherwise, you'll be forgotten. Okay. You'll be pushed to the side, you'll be forgotten,

Scott Benner 36:24
because it deals with the way it works. And Trinsic Lee is it deals with people who are dying, and then a person who's slightly better off than them. And, and by the time they get down to somebody who's like, for example, like my irons low, that's a year, right? Like, Yeah, nobody's rushing to help you if I need a certain infusion, or I think my TSH might be a little high. And that might be why I'm anxious. You're not getting somebody to whip you up and bring you in real quick. No,

Anonymous Female Speaker 36:50
I mean, first of all, nobody has that even that level of education. Nobody knows what to ask. Nobody knows, like, how to talk to health care workers. They just the majority of Canadians that are tonight's they just sit and wait. And they show up when they're told and they do they take pets that they're told, and they don't ask any questions, and they go along their merry way. Right. Okay. There's the I would say, the small group of people like me, who don't just take whatever answer they're given, or don't just take whatever Doctor they're given. It's a little bit more difficult now, especially from COVID. Because, like, our health care professionals are dropping like flies. They're not getting paid enough. They're all quitting. It's the same with teachers up here. Teachers are like, running jumping ship. Yeah. So it makes it that much more difficult to get into see anybody. Like I have a cousin who has been dealing with gastro issues for months, and she's wasting away, like literally wasting away. I think she's lost about 80 pounds, and she didn't have a lot to lose to begin with.

Scott Benner 37:56
And maybe are like, What do you mean?

Anonymous Female Speaker 38:01
You she just can't keep food down. So I've suggested that she's apparently been tested for that. She's been tested for a myriad of other things. She's had scopes done. She said all kinds of stuff done. It can't seem to diagnose her. She can't get in for eight months. No, I

Scott Benner 38:16
wasn't kidding about that. I know Canadians. I know. It takes about nine months if you're not like literally dropping dead right now to see a doctor.

Anonymous Female Speaker 38:22
Yeah. And I've known Patricia before she gets the testing.

Scott Benner 38:28
Once she's about to die, they'll see her immediately. Yes, this is true. That's all fine. Don't worry. It'll be fine. No, this is this is exactly what I'm talking about. And then you're saying then the level of care suffers, too, because people who know what they're doing are leaving the industry as well. That's right. Okay.

Anonymous Female Speaker 38:46
That's right. Now, on the flip side, like for someone like me, who has a team, who has regular appointments, who is already in the system, who has a chronic life threatening disease, whatever, like, I get priority, so it works out, okay. And it saves me a ton of money, because I'm going to the doctor or a specialist or doing this and that and everything like all the time, right? If you are just somebody who kind of pulled through life, and you're doing pretty good most of the time, and you don't really have to go to a doctor until like something comes up or, you know, you need something signed off for work or whatever. That would be ideal. And there's actually a lot of Torontonians who are looking into private medical care where it is like it mirrors what what the system is in the US. A lot of people are showing up. Yeah, and you pay for whatever you want, and you get in within the hour.

Scott Benner 39:37
Well, I mean, listen to the same goes for here, the better your insurance is, the more capable you are of paying, the quicker you're seen. But right but the truth is that a long wait in America might be 30 days, you know, six weeks to get a doctor's appointment. And if you were really in trouble and you just said hey, I can't wait that long. They'll slip you in somewhere. Yeah, but those doctors are also being paid. So every time they bring someone in, it's a Ching. So that they're, you know, that's what they're trying to do. They're trying. So you either go up to a situation where it takes you forever to be seen. And then once you're seen, if it's something they understand like diabetes, then maybe it's not so bad if you have a good team. But if it's not something, they understand that you have to advocate for yourself and say, like, you know, this isn't right, or I need my levels to be here, or you're not addressing my symptoms, like that kind of stuff. And by the way, I've, I'm now talking with Canadian and US people in this, you know, in this anonymous setting, no one's saying anything different. Like, yeah, I get like, I go to the emergency room. Have you ever been to the emergency room is a type one? I have? And do they know anything about diabetes?

Anonymous Female Speaker 40:49
I've been to I've been to the hospital for different reasons. And the so when I was pregnant, I was on pumps. They took my pump away. They wouldn't give it back after birth. They had me on a drip. One of the nurses even came in and asked me when I finally did get it back. What is that? And I'm thinking to myself, Oh, my God, like I've been on a drip getting insulin and you're in health care, like how do you not even know what it is? Maybe you don't know how it works. But how do you even know what it is or that it's a possibility for me in terms of managing my diabetes, but anyways, I had to get my obstetrician to actually write a note to get the nurses to allow me to have my pump back. And this was back, you know, like 17 years ago, but much better now. I've had surgeries since then, where I keep my pump on the entire time, because they realize you know better what to do than we do. So you just move it out of the way of the surgery and make sure that you're doing certain things prior to to keep you safe, whatever, which is a great advancement. But I also have had an experience where I went to the ER, because I just kind of I don't know, I was panicking. I wasn't sure about my heart health, I kind of felt like my chest was really tight. And I just wanted to play safe. And it turns out that I was in DKA. So they they knew I had ketones and stuff like that. But they tested me and I was moved to an inner waiting room like you go in, you get triage, you're in a waiting room. And then depending on the severity of your case, you get moved to another waiting room inside. And I was sitting in that room with another girl who was like all balled up in her chair with blankets and everything. And the doctor came in and went straight to her thinking it was me. Meanwhile, I was just sitting there watching TV, my looked completely like I looked like I had brought her there. I was just waiting with her right. And so when he caught when he went up there and said my name, I'm like, no, no, that's me. And he looked over at me and he was like, you're in the head. So he knew what it was. But he was he was mystified based on what he knew about it, that I was coherent that I was just sitting there like any regular Tuesday watching TV waiting to be seen that I wasn't throwing up that I wasn't, you know, near death. Well,

Scott Benner 43:06
now that you do this job, though. So you're a CD in a private practice or in a hospital setting. Private

Anonymous Female Speaker 43:12
Practice hospital setting clinics, family health teams.

Scott Benner 43:17
Okay, what are you not doing that you shouldn't be doing? Where people being where people falling short? Where are the cracks? What could happen that isn't happening? Tell me why those things are happening.

Anonymous Female Speaker 43:29
I would say number one, mental health. There's such a huge gap in mental health care. I have so many patients that I spend so much extra time with in my calls on purpose that I can't I say I can't help they claim that I am very helpful. And they actually refuse to be switched to a different educator because they feel that I'm helpful. However, from my perspective, they're still coming back with blood sugars in the 20s constantly they're still coming back with you know, a onesies above 10 They're still coming back with haven't taken my insulin for the last few days. I couldn't get to the pharmacy. I haven't checked my blood sugar's like today I had a patient who I haven't checked my blood sugar's in six months. Her brothers in palliative care her her daughter is dealing with spina bifida, she's a caregiver for both of them. She's super stressed out at work, so she just gave up on herself. And I can't help that, right. I can talk to them, and I can inform them and I can educate them. And that's what I try to do. And I try to encourage them to be kind to themselves and to understand, you know how closely connected depression is with diabetes and how that's a vicious cycle and all of that, but I feel like I can't help them because they're still coming back to me at the next checkup in the same situation to

Scott Benner 44:50
do you know why they're not taking your advice?

Anonymous Female Speaker 44:54
I think it's a myriad of different reasons. I think cost is a major barrier because You know, there, there are many different programs that are available. But each of them have such restrictive criteria that there's usually always something that prevents people from getting access, right. So they also don't realize that they can ask for different things. So if an endo prescribes a specific insulin, like to receive a, for example, a long acting Basal insulin, not all insurance companies will, will cover that. So then they ended up paying $400 out of pocket for, you know, a month supply, when they could be asked to be switched over to jail or basketball or something else. And

Scott Benner 45:35
the doctor doesn't help with that the doctor just writes down the first name that occurs to them, if your insurance doesn't cover it, then those people have no way of knowing that they think, Oh, this is the insulin I need. Now I have to pay the $400.

Anonymous Female Speaker 45:46
That's right. Right. And some doctors are good. Some doctors will switch them up, but not all them do.

Scott Benner 45:52
Whose fault is that? Well, for sure, I

Anonymous Female Speaker 45:55
would say it's the healthcare professionals fault. Okay. Because there should be options, there should always be options. It's not that they have to go into major detail, but there should be always options presented.

Scott Benner 46:06
Hey, I'm prescribing you to see but if your insurance doesn't cover it, let me know. I'll find another one. They do. Yeah.

Anonymous Female Speaker 46:13
Okay. Or even just saying, what kind of coverage Do you have? Before you even mentioned recibo? Maybe they might even know, based on that. We as healthcare professionals are pretty well versed for what's available under which programs, whether it's government funding, whether it's disability, whether it's employee, provider, you know, insurance, whatever, we all have a pretty good idea.

Scott Benner 46:33
So why doesn't it happen? Lazy? Laziness,

Anonymous Female Speaker 46:37
it could be because they have, you know, like, a good relationship with the big pharma rap and they want to push that product because they get more perks or whatever, you know, if there's,

Scott Benner 46:49
that's not out of the question to be true. Still Still in 2023? You're in Canada, though, do you not have laws against that kind of stuff?

Anonymous Female Speaker 46:58
Yes. But it's I don't know that it would be necessarily on purpose, or intentional, but it's also like, Okay, our endos spend maybe 10 minutes with each patient, which is why education programs are a big deal, because we spend a minimum of a half an hour with every patient, sometimes an hour, depending. Right, right. So, and those are not educating. They're not asking a lot of questions outside of what have your blood sugar's been? And how often are you taking? Or how much are you taking your medications, a lot of that information comes from us, the educators, because we will see them first, update their notes, and then the end, those just go based on what we've done to save them that time. Right. So I think a lot of it is just time constricted, we have so many people like through COVID, our type one, in just this region where I'm at has tripled type one diagnosis over the over the years since COVID. has happened. So I think that, you know, the amount of patients that are now being recognized, diagnosed and screened, and all that kind of stuff that has literally saturated, the amount of professionals that we have to properly support these people has caused a lot of the problem because there's just no time. Is

Scott Benner 48:17
this why the podcast as popular? Do you think? Because people just can't get this information anywhere else? Yes, that's simple.

Anonymous Female Speaker 48:24
I also think that there are, you know, a number I don't know what the percentage is, but there's a number of educators that are in the field that are not type one or that are not, you know, somebody living with diabetes, and they don't necessarily have anybody living with diabetes, they just came in learning from what they got at school, which is two weeks out of a four year program that talks about diabetes. So

Scott Benner 48:51
I can take a four year program, and then when I come out, say, oh, I want to be in diabetes, and I still only had two weeks of education for it. Yep. That's a valuable decision. Okay.

Anonymous Female Speaker 49:03
Now, it's up to the clinic to determine where you can go and what you can do, right. So when I came out of school, I joined a clinic that was a National diabetes and Endocrinology team across Canada. And I had to start off doing diet consultations, right basic healthy eating, I had to do workshops, which were already scripted and the slides were already done. And then I would go and I'd have to do like a core competencies test to make sure that I could get that level of care. I had to shadow people so I would hear what they were telling him what they were doing and I had to be shadowed and all that kind of stuff. Then there's like different levels. So there's like four or five different levels that I worked through. That got me to seeing patients on pumps, for example, right so I went from like almost pre diabetes education to now complex pump patients,

Scott Benner 49:55
right. How long did it take you to get through that process?

Anonymous Female Speaker 49:57
For me it was fast tracked because So I have no such lived experience. Yeah. Okay. So I would say probably on average anywhere from one to two years dependent on how quickly somebody picks up what they know about it before they come in, and how motivated they are to be moving up. So

Scott Benner 50:16
bare bare bones, we're suffering from under educated clinicians, or under motivated, or, yeah, I guess that's it right there. Either they don't care and it's a job to them, right, they're gonna go do the thing they're supposed to do, you don't do well, it doesn't matter to them, they did the thing they were supposed to do today. Or they just don't even know well enough to explain it to you. So they're basically reading to you from the first two pages of a manual. And that's, of course, not going to help anybody get anywhere. But there are people like you who understand it. Like intrinsically, even though you did not apply it to your own life, you still understand it? And like you said earlier, like you were online explaining it to people, everyone found your way of explanation valuable. You brought that to a professional life, to your giving people that amount of effort, is it helping them?

Anonymous Female Speaker 51:08
I mean, the feedback that I get, I have to say yes, is good, okay. Now, it doesn't mean that they're going to come back with improved timing, right? It doesn't mean that all of a sudden, they're going to change everything, the way that I'm recommending based on the guidelines. Okay, but they feel heard. It's a good thing. They feel Yes. And they feel informed and they don't feel judged or attacked. So so it opens them up to the possibility that over the next six months over the next year, we can actually start to make some progress.

Scott Benner 51:40
Yeah. So you're making my argument that you haven't heard yet, because it's just right now, just Jenny and I are recording with each other. But you're you're making my argument, which is hard heartening to me. My argument is, there are a myriad of implications about people taking care of their health. And not everybody is going to do a good job, not everybody's going to care. Not everybody's going to have the bandwidth to handle it, there's going to be a ton of reasons why somebody might not make out well, but that doesn't mean we shouldn't give them all of the information in a way they can digest so that hopefully they put it into practice. That's the guess.

Anonymous Female Speaker 52:13
Right? That's also a challenge though, because think about in the hundreds of podcasts that you've done, think about how much information that potentially

Scott Benner 52:23
is. The truth of it is it's timing and amount. It's understanding how insulin works. It's understanding the impacts of foods like that's the foundational information. That's right, you have that foundational information that should be enough for you to see impacts, and then be an adult make a decision if that's something you want to do for yourself or not. That's what I think we owe people is a chance. I totally agree. Yeah. Okay. But we're not even offering some people a chance. Is that fair? It

Anonymous Female Speaker 52:52
I think it's fair. It's just so convoluted, because then you've got all the socio economic and psychosocial aspects, right? So I couldn't be providing care to three different patients, right? One of them I'm providing the same like what you just kind of threw in that nice little basket, right? I can give them each the same exact basket, right? If I have adult a who, okay, put on your big boy pants, and let's get going because here's the foundation of information you need to be able to maintain a healthy lifestyle and improve your blood sugar's and your overall health and well being, he's gonna go home and be like, I'm on it. I don't want to, you know, I don't want to have heart problems. I don't want to lose my eyesight, I don't want to feel like crap, whatever, he's gonna go home and he's gonna do it, he's gonna come back and his budget is gonna be perfect, right? Which we all know, that doesn't exist. But just for sake of argument, yeah. Then I go to patient number two, right wants to do everything they can, doesn't have coverage, doesn't have an education to understand how, you know, certain things kind of work together. Might can't may or might be able to do a couple of things. But just you know, from access, you know, like maybe they can't afford to buy healthy foods. They know how to do it, they want to do it, but they can't afford it. So like different things like that based on socio economic perspective. But then you got adult three, who gets it could do it has the money for it, but then the mental, the mental health support is gone. So they don't care. They don't want to think about it. It's too much of a burden. They're not they're not connecting. How you know, like one of the big aha moments for me was years ago before I transitioned into this whole thing I think I had my son I hadn't yet had my kid my daughter's I'm not sure I can't remember but I was in a in like a phase where I was just really easily agitated. I was I was exploding on people instantaneously like with very little prodding or poking or whatever. Yeah, and I went in And I was saying to her, like, I'm just pissed off all the time. And I don't really know why. But I'm just sick of everything. And I'm so pissed off, and I just want to really be alone. And she said to me, like, your blood sugars are higher. We've had this conversation so many times I know where you're at, I know how you feel. But do you know that when blood sugars are higher for extended periods, it actually impacts your level of patience.

Scott Benner 55:19
That makes you foggy and irritable. And I'm, by the way, on top of that, you have a thyroid issue, which could also impact that so. So when she says that to you, you're not the right person to tell it to. That's the problem with you being an adult not having somebody in charge of you at that moment, because now I'm putting the person who's already like, medically irritated in charge of making themselves not that way. Well,

Anonymous Female Speaker 55:42
yes, but at the same time, I was like, what? I had no idea. Oh, yeah. When he told me that no

Scott Benner 55:49
one ever even told you that that could be an implication on on, because that's the thing I say on the podcast all the time is people at the very least this deserves to be themselves. Like, like the person they would be if they didn't, if their pancreas didn't stop working, and their blood sugar didn't get high, and they didn't become irritable, and etc. Like you at least deserve to be yourself. Yes, I think a basic necessity of this. How else can you even make a good decision? You know, it's interesting is like, it feels like what you said was, there are people who are either, you know, told, Look, here's what could happen. And they say, well, that's not happening now. So I don't really have to worry about it. Or there are people who would happens to who then go, Oh, it's too late. There's nothing I can do about it anyway. Yep, that's yes.

Anonymous Female Speaker 56:32
Or you got the exact opposite. In both situations, we're so scared that they'll never eat another cupcake,

Scott Benner 56:39
or anything. I've heard of people who have trouble bringing themselves to eating, like for anything? Yeah,

Anonymous Female Speaker 56:45
they I've had patients who have developed eating disorders that are afraid of carbohydrates I've had, I've had the spectrum, right. I think like kind of dialing back to your earlier point. Yes, everybody deserves a basic foundation of information, a little basket, right, of healthy eating exercise, whatever, that's fine. But there are so many intricacies within all of that, that don't often get touched upon. And and a lot of times come up by mistake, because it's like walking a tightrope, right? How much information do you give somebody? How much are they going to be able to digest and apply? What are they most focused on? Like? Are you talking to somebody about exercise and activity? Who is a fitness junkie that really wants to do all of that? Or are you wasting all this time talking about it making somebody feel worse about themselves, because, you know, they know how important it is, but they just can't figure it out. They don't want to do it or whatever, right. So for me, like, that's really kind of laser focusing in on the details when I got that information about how higher blood sugars impacts patients levels, I can't ever necessarily see that coming out in the general initial assessment sessions that are structured that I've been privy to. So when you're first starting at a diabetes care, and you're learning from people, it is that let's talk about a balanced plate, let's talk about, you know, the foods that impact blood sugars the most, we don't really get into the details of simple versus complex carbs too much, but we kind of talked about vegetables, meats and or plant based proteins and you know, carbs, right? So sugary foods, breads, Rice's, whatever, that's how we sort of present it right. And then we talk about medications, they all kind of do different things. If you're a type two diabetes, you have all these different kinds. If you're type one, you're basically on insulin. And this is what the two different insulins do, and here's how they work and blah, blah, blah. So they walk away, they get it, they might get some information about some of the known complications just so they're not shocked or surprised by hearing it from somebody else when they tell them they have died one or whatever. But understanding how it's all connected. Like I remember to I didn't I think it was your podcast with Jenny that flew me into the a one sea being based on evidence of retinopathy.

Scott Benner 59:00
That's something that you heard in that last handful of years where you're like, I didn't know that. I

Anonymous Female Speaker 59:05
had no idea. Yeah, right. I'm like, Oh, okay. So cuz I was just like anyone see, that's just all I've ever heard since I was diagnosed. Right. But I had no idea that the whole reason or the establishment of the agency was based on the chances or the risk of developing retinopathy.

Scott Benner 59:18
Did you find the podcast prior to your professional change? Or after? Before before? Okay, okay.

Anonymous Female Speaker 59:27
And I think, you know, to answer the question that you kind of started, we went to the left turn, but your podcasts for people living with type one that can't access healthcare the way they want to or as quickly as they need to, comes in handy, because there's the lived experience aspect of it, and it's not all just buy the book. Right? It's about how do you really live life with type one in the best way? How like all the little tips and tricks and all the rest You'll stuff about life with type one managers. What does your lab work say? What does the science book say? What did the guidelines say? What am I allowed to tell you? Right? Yeah. So that's where I think the biggest benefit is. And there are people who will trip on your podcast and learn about how to Bolus for fats and proteins that has never been discussed with me. And 26 plus years of living with type one.

Scott Benner 1:00:25
Yeah, no, no, it's actually somebody just put a post up on the Facebook group today. And they were like, hey, you know, how many carbs do you think this this was three deep fried chicken tenders, like, like chicken strips with about 25 or 30, French fries, three packets of ketchup. And people jump in to guess the carbs. And it's fascinating. How few of them under even understand that the chicken has carbs in it, because it's got breading on it or that the three packets of ketchup or like 10 carbs, like total? Yeah, people are like, Oh, this is like 30. I'm like 30. There's a 65 carbs here at a minimum, and look out for the fat rise come in 60 to 90 minutes after you start eating. And people are like, Why? They're all out there and making decisions for themselves. Now the people who have been around the podcast longer, I was also heartened by how many people that fell into the 60 to 70 carb range when they were making the gas. But a lot of people were like, is this 3035? I'm like, the fries are 30. Like, what are we? Oh, boy. And yeah, all the grease and the deep fried? So slow your digestion down? Like you don't? You don't know that? Do you? Okay. All right. So you explained that there. And now you realize you've explained it for a couple of 1000 people who the algorithm was nice enough to deliver this to today who are in the face? It's not even as easy as like, oh, well, the people are in the group, they're gonna get the information. Yeah, everything is stacked against you. Like, yeah, down to the algorithm, not feeding you the the information in the group you were in to try to find the information out to begin with? Like, if I put you in charge, I'm doing this with everybody when I'm talking to them. Yep. What fixes this as best as it can be fixed? Am I wrong saying give people foundational information? Hopefully they'll find their way to the rest of it. Is there more different? What do you think?

Anonymous Female Speaker 1:02:16
I think that's one approach. And that is kind of the approach that is mostly followed here. It's just so lackluster, because you would have three podcasts, right? So if we didn't have all this extra information to learn and to know and to grow, and to understand, like, how many podcasts you have in total now and think about how that reflects back on what people are getting when they walk into that foundational understanding appointment. Yeah, but

Scott Benner 1:02:44
in fairness, like there's over 1000 episodes of the podcast, but the people who are really just looking for management stuff, they only need the they need the defining stuff. So they understand the terms, they need the Pro Tip series, maybe the fat and protein stuff a little bit about how to change the math for their settings after that. Like I mean, that's enough to get you into a six a one. See, you don't have to understand the whole thing to live healthy, like, but I don't know what's happening, that they never go out in the world and look for more, is it because they're they think that what they're being told, is all there is? Or do you think it's because they're a little, like, out of sight out of mind, or I don't care that much? Or how much of that do you think's involved to?

Anonymous Female Speaker 1:03:24
I think it's a bit of everything. I think for most people, they're so overwhelmed by the diagnosis, that they take what they're told, and they think that's all there is. Okay. I think they're scared to do anything else. The majority of people that I talked to that, you know, they saw me three months ago, and they they increase their their ICR, where they strengthen their ICR at dinner, you know, by one point or whatever, they haven't done anything since. And I'm like, we had this conversation. I explained like, this is me thinking in my head, right? Like we have this conversation, I explained to you how you can safely adjust on your own in between appointments. And you haven't done anything and your blood sugar's are still 12 1314 After dinner, right? So what's missing? When

Scott Benner 1:04:13
I decided to make these episodes, I think in my head, I thought we'll make the people anonymous because there'll be talking about the place they work. But you're the first one was like actually talking to the patients. And I still want you to be anonymous, because it allows you to feel more free to just say, Hey, this is what you this is what I see you guys doing. And this is why it's hurting you. Yeah. So it's an interesting perspective, because everybody's trying to be polite when you talk to people, generally speaking, like nobody wants to come out and say, like, I had somebody on one of the other episodes just I think said something about like, look, some people just don't have the brain power for that too. And I was like, wow, that is not a thing. Somebody would have said out loud if they thought anybody knew who they were. So, you know, so anywhere between like your ability to understand what's happening to someone acts claiming it to you. Listen, I can tell you right now I had the ability to understand it. No one explained it to me. And it took me years to figure it out. Yeah. And I may have only figured it out because I was writing a blog that what I thought was my blogs not helping enough people just sharing, you know, because what most of blogging was back then was like, this is what's happening to me. It's just happening to you. And people go, Oh, my God, it does happen to me that people are like, Yeah, I love that blog. But that didn't help. You know what it is like, right, like? And so I was like, well, let's help people. And so once I started figuring it out for Arden, that was the first person I was trying to help artists, the first person I was trying to help. And so I figured out what to do. And then I wrote about a little bit, and then people were like, that helped me too. And I was like, Oh, that dispels the rumor that everybody's diabetes is super different from each other. It's like they're different. Your variables are a little different. But again, the foundational basics of it, are the same. And that's where I'm coming from, because I've ended up saying this in a couple different episodes. But I'll say here as well, the thing I had to learn to do more than anything else was to communicate one way with somebody, like the person I'm talking to right now cannot talk back to me. And I don't know any of their details. And they have their variables, I don't know if their IQ is 80. Or if it's 130. I don't know if they went to college or grad school or couldn't get out of high school, like, I don't know anything like that about about anybody. What I did was I endeavored to communicate in a way where everybody would be comfortable in this conversation, and that nobody would feel talked down to and or would feel like this was so elementary that they shouldn't be listening to it. And so to me, it's about communication. To me, that's what it is like, I don't think there's a person with type one diabetes that you couldn't put me into a room with, that I couldn't explain at least enough that they could keep their a onesie in the 60s. I think I can do that. I

Anonymous Female Speaker 1:06:55
know you could do that. whether it happens or not is the different story, right? But

Scott Benner 1:07:01
if I can do it, then why can't a nurse practitioner do it? Or a doctor or a CDE? Or an endo? I mean, I'm a good communicator. But Jesus, like, you don't have to be that good of a communicator to get this these points across to you? Or am I listen, let me be serious. Am I just way better at it than most of the people you meet?

Anonymous Female Speaker 1:07:20
I think so. That's the pressing. Like, seriously, and that's coming from somebody who has often been told, Oh, my God the way you said that just made all the

Scott Benner 1:07:30
difference? Yeah. So you've heard that from people? Yes.

Anonymous Female Speaker 1:07:33
And I still don't think that I am doing as much good in this world as you. That's

Scott Benner 1:07:40
nice of you to say, but it's upsetting. So is this a situation where I'm making an entire series of episodes that way? At the end, I'm going to realize I'm unfairly asking something of people they can't do. And I don't mean the patients. I mean, the providers?

Anonymous Female Speaker 1:07:54
I think it also has so many things pop into my head, I think, you know, from a provider standpoint, right? It's time, how much time do they have? How many verses haven't like supply and demand, right? How much time do they have versus how many patients they have to see, there's no way they are ever, ever ever in the weight and the model of care right now ever going to be able to do much more than say, Okay, let's review your blood sugar's, let's review what you're doing with your medications. Here's the different medication you have maybe answer one question. I

Scott Benner 1:08:26
don't know why nobody listens to me about the math, there should be mass appointments. Well, we

Anonymous Female Speaker 1:08:30
have like the education centers that we have, many of them are now doing group programs and have been for a long time because of that they're trying to get as many people together to do these programs as they can. But then at the same time, like, what's frustrating for me is one of the clinics that I worked for the National clinic that I do do workshops, and teach workshops for and stuff. And I actually introduced an entire type one specific program, all of this stuff that I was doing, I was getting pushed back. Because I mean, first of all, it was kind of like some of this stuff was a little bit, not grade six reading level, which is the standard. But in my opinion, like if you have type one diabetes, and you're signing up for something like this, you have enough of a foundation that you don't need it to be grade six anymore, you're

Scott Benner 1:09:19
asking by virtue of asking should indicate you have a higher level of competency.

Anonymous Female Speaker 1:09:24
Right? So then it was kind of like I was spending all this time and I was doing all this work. And I was developing all these workshops, and I got good feedback. But I don't really feel like I was telling the people what I wanted to tell them like I wanted to come at it from a perspective of the kinds of things that you're doing the conversations that you're having, but then it was like I had to dial it back to kindergarten again and people don't feel like they take it and apply it the same way that they might if they were listening to like real conversations that you're having in podcasts. Yeah, right.

Scott Benner 1:09:55
Jenny and I did a live event recently and it It was, you know, when it first happened, the people invited I said, like, you know, you can come and talk for an hour. I'm like, I'm not flying anywhere to talk to anybody for an hour. I was like, it's a day. And she's like, well, nobody will sit for a day. And I was like, no, they will. I was like they absolutely well, so we filled a room with people. And Jenny and I spoke for two solid hours before lunch. And then everyone out into lunch. And I know that people were organized were like, up after they eat, they're going to take off, and everyone came back in. And then we spoke for three more hours. And there was a lot of q&a in there in that three hours, but a lot of just conversational stuff. Everybody stayed to the last second. They were thrilled. And even like, we got a letter from somebody who just said like, on the way home, my blood sugar's were better. Yeah. And like, we didn't talk about anything specific. You don't mean like, it wasn't like, Hey, turn your dial here or make this number this it was more of just like a, like a, like a conversation about diabetes and life? And what are the things that people run into? And then they start making their decisions better? And then then things start going better? Yes. Listen, I can't say it enough. About four or five times a year, a hospital approaches me and asked me to come out and give a talk to the people in the hospital who are teaching their people about diabetes. And every time it happens, I get super excited. And it never actually comes to fruition. Oh, because it gets up the ladder just far. And often someone goes, he's not a health professional. And then the person who had the idea of like, you don't understand, like, I listen to guys podcast, and like, I'm in his Facebook group. There's like, 50,000 people in there while living better because of the podcasts like, we should spread this around. They're gonna we're not gonna do that. I've never once had it happen. Where I've actually been, I've ever made it to the institution. I've been asked to speak at the What's that? CDE? Convention?

Anonymous Female Speaker 1:11:49
They're the CDC. Yes, one. Yeah,

Scott Benner 1:11:51
they get all together, right? I've been approached about that three times. And then when I tell them what I want to talk about, when I get there, they always say, No, that's a shame. Yeah, and so this is just gonna keep happening. Like, like, nobody's going to. There's a lot of different reasons. One of them is I don't think anybody wants to be upstaged by a podcaster. Like, you know, like, do you really want to go to a professional like, thing? Where there are 1000s of people who have all gone to college the way you described? And like, all taken all this courses, done all this stuff? And do you really think that they want my ass up on the stage going? I don't know why you're saying it like that, you should try saying it like this. Because that nobody wants to be embarrassed like that. So like, that's not gonna happen. And trust me that's like, out of someone's mouth. I can't let you talk to those people. That way, they'll be a revolt. Somebody told me if I let you tell them that they don't know what they're doing. So I'm like, but they don't know what they're doing. Yeah. And then person was like, well, that's beside the point. And so there's the people, you're going to sit down and say, Okay, tell me what to do with myself.

Anonymous Female Speaker 1:12:52
I think it's, it's kind of the difference, like, the professionals and I'm lumping them all into one basket, I should say that, you know, to their credit, a lot of the younger up and coming endocrinologist and healthcare professionals in general, the night and day difference, right, in terms of how they approach.

Scott Benner 1:13:08
Let me say, before you go on, I don't I'm not saying this is everybody, right? But there are plenty of people getting fantastic leadership skills, taught to them constantly by people, but it's not nearly everybody. And it's I don't think it's it's probably not one in three. So like, I'm not saying they're out. Like if you're listening, you're like I do all that you're an idiot. I'm like, Well, okay, I'm not talking to you, I'm talking to the other people who aren't doing that. Right, the feedback I get is plentiful enough for me to say that a lot of people get poor direction from their healthcare providers. So

Anonymous Female Speaker 1:13:43
yes, and it's a very slow rolling ball that's moving in the right direction, right. And I think that the way it's differentiated from what I can kind of understand to simplify it as much as possible is the endocrinologist in my experiences, basically does what they need to do to keep you alive. And then I step in and try to provide quality of life. Right? So very much like you, you're educating people, and you're giving advice, almost have the same level as I would as a health care professional, but you're adding in the quality of life component, because you're allowing people to absorb and understand the information, you're able to pull the information when you're ready to accept it. You're hearing it in a conversational tone, you have the ability to listen to it two or three times when something is a little bit more complex than you're used to, or you haven't heard it before. Yeah. So So there's all of that that is also available through what you're doing. That is impossible to do in a healthcare setting. Jesus

Scott Benner 1:14:46
Am I the hope of this whole thing? Because that's not good news for anybody. You want to live in a few others. Yeah, no, not that I'm the only one obviously but I am the at this point in time. I'm the only one that has a mask. Voice yes, that can reach from California to Florida to Vermont to Canada to wherever else. I mean, the podcast is, I looked at it the other day for something. It charts in, like 45 countries. Yeah, it's global. But yeah. Do you know how hard it is to chart on Apple podcasts in one place? It's not easy. So like, when you're doing it over 40 countries, you know, people probably expect me to say like, I must be really good at this. But that's not what I think I'm what I think is the information must be necessary. Yeah.

Anonymous Female Speaker 1:15:30
And the guests that you have the people who you get, like, every aspect of what you're doing is not easy, right? So even if like, Yeah, fine, maybe starting a podcast, fine, whatever, throwing it out there, anybody could do that. But to get the people on that you have, in the past is an impossible feat for many. There are like, there's just so many challenges, right to what you're doing. And you are one of the only ones that I know of in North America, because I've been looking for lots of things over lots of years, that has, you know, the amount of people and the really good solid, applicable, easy to understand information provided, right,

Scott Benner 1:16:09
I appreciate that.

Anonymous Female Speaker 1:16:10
Thank you. Yeah, and I'm not just, you know, trying to blow smoke or anything. This is the honest opinion for me, which is why I'm having this conversation with you today. Because otherwise, I wouldn't have never seen the posts that you were looking for people to talk to you, right. So it's important for me as well to try to reach as many people as I can, in whatever way I can to try to first give them a break. Because a lot of people first of all dietitian already sets me off because people come in and they're gonna think, Oh, my God, she's gonna tell me, I can't eat this, I can't eat that I can't do this. I can't do that. So they already don't want to talk to me, right? Then they're going into their diabetes, doctor's office, and they haven't been checking their blood sugars or their blood sugar's are higher than where they're supposed to be, or they haven't made the changes that were recommended last time or whatever. So they're walking in there thinking that all they're gonna get as the finger wag the judgment, and you're bad, you're bad, you're bad. Before I can even say anything. People will say, Oh, I'm I'm eating terrible. All the wrong foods. It's all and I'm like, Listen, I'm not the food police. I will provide you with information. I don't think there's any good bad, right? Wrong, whatever, everything fits. It's just how you put it together. How often you're doing it. And how much of it you're having. Yeah, right. So all of a sudden, like you the way that you present the information, they look at me, and it's like a deer in headlights, like, oh my god, light bulbs, light bulbs, big bomb, whatever. All of a sudden, everything makes sense. Yeah. And they're not being attacked. And they don't feel like they've failed, and they're not doing anything wrong. And they're your your blood sugar readings are not a report card. And it's life changing.

Scott Benner 1:17:49
Yeah, no, you're right. It really is just to be like, like, on the same level with the person that's helping you. Yeah, not to be spoken down to is such a big part

Anonymous Female Speaker 1:17:58
of all this. And for me to say like, why didn't you make the adjustment that we talked about last time? And for them to say? Well, I was afraid I was gonna go low because I started exercising. And for me to say, I totally get it. Let's talk about strategies to prevent that low from happening so that you can improve your blood sugar's and still exercise and do what you like without feeling scared.

Scott Benner 1:18:21
Alright, well, I'm feeling good about you being out in the world. I appreciate you doing this very much. Thank you. I also hope that one of the things the podcast does is creates more clinicians to think like you and talk like the podcast. So I think that's actually happening as well, you've like I can see data that other people can't see. But the amount of people that come into the private Facebook group who say in their intake form that their physician sent them there is crazy. Wow, that's awesome. Even to me, by the way, like I look at it, I'm like, huh, wow, okay. That's cool. It's

Anonymous Female Speaker 1:18:55
amazing. Yeah,

Scott Benner 1:18:56
really great. But I mean, it's just, it's too slow. is that's the part that bothers me. And I heard you say it twice already. I have probably more reach with people who have diabetes than anyone else. And I'm not doing it fast enough. And that's the thing that burdens me. Like, I look at the downloads, I see the people, I see how many devices there are. And I'm like, it's great. It's a lot. It grows. But I think about all the people who would benefit from it. Like they don't have to listen to a whole podcast. But if you could just get like a pro tip series into their hands. You know what I mean? And it's just so hard. It's so difficult to reach people. And it weighs on me. So

Anonymous Female Speaker 1:19:38
well, you're one person who's done amazing things who has changed. I had this conversation quite frequently with a person that I met through the whole looping network, right. She often says a lot of the same. She's one person who had a child who developed type one who You know, motivated her into diving into this whole world of diabetes and she has changed lives. Yeah. She doesn't see it that way. Well, yeah, it feels bad. Because she can't be there for everybody. She's gotten out. Like when I joined, it was probably like, 1200 people. Now there's over 60,000 across the globe. And this is a 24/7 thing, right? You can't do it. And she's there. Like, she used to reply to my messages within minutes, anytime a day, three o'clock in the morning, or in the afternoon, whatever. And then she would apologize. If she took longer than a half an hour,

Scott Benner 1:20:38
I would worry, that's gonna burn you out pretty quickly. But in fairness, like that's a written thing through Facebook. I have a megaphones pretty big, dude. I mean, like, there's no at the moment, the way technology is set up right now. And the stars that have to align for me to be a person who says the thing that people understand in the way that you explained earlier? Yeah, like I have the biggest megaphone, I still can't find all the people. Right, but you're one person. Yeah. But also, but my things not, it's not like I have to answer every person individually. Like, that's what that's the problem she's involved in is that, like, if somebody asks you a question on Facebook, you have to have this one on one interaction with them. My interaction that I record one thing, and then countless people are able to hear it, but I'm still not reaching enough of them. You're

Anonymous Female Speaker 1:21:25
also editing and you're also producing, and you also get a lot going on all the people together. And you're also like, that's the stuff that people don't see, ya know, I

Scott Benner 1:21:34
mean, it's, it's easy to say I'm making a podcast, but the truth is, if you followed me around for a week, you'd be dizzy. By the time it was, yeah, yeah. So it's

Anonymous Female Speaker 1:21:41
time consuming. And you are one person. So if you can get, you know, one podcast out a week or whatever, that's,

Scott Benner 1:21:48
that's impressive. Would I turn them out? I put five out a week. No, but that's

Anonymous Female Speaker 1:21:53
what I'm trying to say. Right is that I don't think the audience if that's how you feel and some of the feedback that I know that you've been given that you've been kind of posting about, which pisses me off, but anybody who doesn't understand it's understandable that they don't understand it, because if they don't do it's like type one, if you're not in it, if you don't do it, you don't get it, right. But the amount of work that it takes to pull together what you what you're turning out, is the average person could not do it. Like, just couldn't do it.

Scott Benner 1:22:21
I don't think you're wrong. I'll take that compliment and say thank you, because I don't feel that way. Because you're you're changing the world, my friend, you're very nice. I'd like to do it a little faster, because I'm getting old. So I'd also like to retire at some point. I don't know if that's evident to anybody or not, like I'd like to, I'd like to be in a situation where I, I can relax for five seconds. And

Anonymous Female Speaker 1:22:41
yeah, and you deserve it. Right. And that's the beauty of the podcasts and everything because it's recorded, and people can access it forever.

Scott Benner 1:22:48
Yeah, everyone deserves to be able to relax once in a while. But I've had a long life in a short amount of time. And I'm, yeah, I'm looking to do one more big thing for people and then kind of go my own way. But it's just it doesn't feel like there's an end to it. That's that's the bigger issue is that it just it feels like you can't, you can't possibly stop. Because that's the other problem with the way this is social media. Like basically, think about television, my example always is, somebody has already made a perfect television show. But yet we make another one tomorrow, because not everybody goes backwards to see something that's that's ended. And so part of keeping this helping people is keeping it alive. But you have to keep making content to bring people in and it can't just be about diabetes. It has to be it has to be entertaining. It has there's so many little things that people would never understand. I'm sure there are other people out there with podcasts are like, I don't understand why my podcast isn't popular. I could listen to it and tell you why it's not. But yeah, they're never going to figure it out on their own. Well, this is why I've never tried to do. And even if somebody even if you figured it out, there's no saying you could actually do it. Like even if I said to you, it has to be more like this. Or also it has to be like real, like I'm not pretending to be something right now. Like, do you know what I mean? Like so yeah, I did an online thing the other night for more rural diabetes Day, I did like a two hour talk on Zoom. There's like, great, great bunch of people showed up. And at the same time, I was like, I'm just gonna throw my phone up here on the side, and I'll livestream it on Instagram. And it's just a two hour conversation about diabetes. I don't know if anybody will ever find it. But I know if they did, they'd be better off at the end of it.

Anonymous Female Speaker 1:24:27
Okay, so this is where that whole thing comes into play. Where if you can save one person? Yeah, no, of course it's worth it. Of course. Yeah, of course it is. And I'm sure that you've probably saved hundreds.

Scott Benner 1:24:40
I mean, I must have three at this point. I gotta have three.

Anonymous Female Speaker 1:24:45
Oh, well, you have enriched my life and you have motivated ways that motivated me in ways to provide better care to people living with type one diabetes than you'll ever know. So there's that

Scott Benner 1:24:55
I appreciate that very much. I'm going to stop on that because that makes me feel really nice and I I'd like to stop on feeling nice. So hold on one second.

Anonymous Female Speaker 1:25:02
I don't know if we covered all the material you want to seven different branches of stories but

Scott Benner 1:25:07
no, no, no, no, you did find this was perfect. Thank you

a huge thanks to Omni pod, not just my longest sponsor, but my first one Omni pod.com/juice box if you love the podcast, and you love tubeless insulin pumps, this link is for you. Omni pod.com/juice box. I'd like to thank ag one for sponsoring this episode of The Juicebox Podcast and remind you that with your first order, you're gonna get a free welcome kit, five free travel packs and a year supply of vitamin D. That's at AG one.com/juice box. 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. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1139 Grand Rounds: Communication

Scott and Jenny discuss the need for clear communication between doctors and the people that they care for.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 1139 of the Juicebox Podcast

Welcome back to the Grand Rounds series today Jenny Smith and I are going to be discussing the communication needed between doctors and patients. 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. Don't forget to save 40% off of your entire order at cosy earth.com. All you have to do is use the offer code juice box at checkout that's juice box 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/juicebox T one D exchange is looking for you. They're looking for US residents who have type one diabetes or are the caregivers of someone with type one to fill out a short survey, T one D exchange.org. Forward slash juice box. When you completely fill out the survey, you're helping people with type one diabetes, and you're helping to support the podcast. It only takes about 15 minutes T one D exchange.org forward slash juice box

this episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us met. This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next one.com/juicebox. Jennifer, welcome back to the Grand Rounds series. Today we're going to talk about communication.

Jennifer Smith, CDE 2:17
Yay, yeah, let's say munication. That's a broad topic.

Scott Benner 2:22
Well, we're gonna we're gonna lean on listeners a little bit for this one actually, maybe a little more so than we have in the past, we have a lot of feedback from listeners about what they wish their doctors would do regarding communication. So I'd like to step through it. Yeah, it's kind of a long one. So we'll jump right in. The first one here says I want my doctor to know that I am an entire person who has diabetes, not a diabetic. And that this is not my entire life. It ebbs and it flows, my controls are normal, and they're okay. And in the end, I need to be treated like a person. And I think that's a good way to start. Because, you know, you and I were just speaking before we recorded and we probably should have just said this while we were recording, so I'm gonna bring it back up. Doctors need to talk to you, like they're real, and understanding how to communicate with people and be human and reflect while people are talking, not just talk at them, but see what they're going through. And respond to that, you know, instead of just yelling orders be more collaborative, I guess is the way I would think about it.

Jennifer Smith, CDE 3:28
Right. And in that collaboration, what you're going to take away, whether you're a doctor, or an educator or a nurse, or you know, whoever is the clinician, that the person with diabetes trying to interact with, they, they need to take that all into consideration for the data that the clinician is looking at, because that data is only truly numbers. And those numbers translate into somebody's life, and why they look the way that they do like you said it might be I've had a really great couple of weeks, everything's been lovely. I had a week off, you know, from my job, I got to relax, I didn't have any crazy, I have to go to school because my kid got in trouble. You know, all the variables that could sneak in, everything was calm, whereas two weeks prior to that, maybe everything was hitting the fan, right? And so, as a clinician, if you're not asking or learning how to communicate on a personal level, you're gonna miss why the information looks the way that it does. If you're really just looking at it black and white people aren't numbers.

Scott Benner 4:40
I don't imagine that anybody listening has never been in the situation where you kind of look up one day and you think I haven't cooked a meal for myself and days. Like I've been eating leftovers or I stopped on the way home or I did something like that. It builds on you. You don't recognize that you're out of your rhythm. Yes, right. And then if you to go look at that weak of blood sugars and say, I see a lot of spikes here, there's some lows. And you know what happened? Right? That what happened? First of all is mind numbing. Like, I don't know what happened, it was two months ago. That's that's the first problem with it. But the second problem is, even if I could remember, you've probably looked at the chart when Oh, that's the week that I wouldn't put two and two together, I wouldn't say oh, that's the week I stopped cooking for myself that week, because right work was hard, or to feel that humanity is important. Because otherwise, what you're saying is, Hey, what did you do? That's how it feels. And you a don't know what you did? And B, you were trying the entire time, like that, I think is the that's where the damage point comes in, is that these people are working really hard. And trying to do well, it's not going their way. Okay. But instead of saying, What did you do, do better? Find out what happened, if they don't know, then just say, look, let's just look at the graph and see what we can do here. You know, like, Let's offer a suggestion, if you don't have a suggestion than asking what happened is almost cruel. You know what I mean? Correct? Yeah, absolutely.

Jennifer Smith, CDE 6:08
Because oftentimes, whether the person with diabetes voices that or not, they are coming in, because there is something that is often not going 100% The way that they want it, they may not know themselves, how to communicate that back to you as the clinician. And so for you to, it's almost finger pointing, and it's a blame scenario, when you're saying, Well, what happened here, pointing your finger at, you know, one, high blood sugar, one really extreme low blood sugar. And again, the person may have no idea three weeks ago, what happened. But if there's a recurring theme, then your job as a clinician is to help figure that out, and give them suggestions. And be able to say, Well, I see that, you know, every three weeks, you've got this big project that you're trying to do with your business. And I can see that this translates into meals that aren't, you know, as timely or a lot of stress that keeps things high. Why don't we try this, I can see that this variable is hard for you to make it better and maybe make you feel a little bit better, better, you know, looking blood sugar's would help in this scenario, let's try this, try this setting change, try, try to, you know, have meals ordered at regular time. So they come to your office or give them a solution that they can start with, I guess,

Scott Benner 7:30
something that is clear, concise, and you know, is going to reasonably speaking work to because I think the other problem can be is when you just start like spitballing and they go home, like you knew, you know, hey, the guy said, you want to go home and you you put it into action, it doesn't work, you're like, well, he doesn't know what he's doing. And I'm still lost, and he's gonna yell at me when I go back again. And even if you're not yelling at them, they feel like they're being yelled at. Right? So it mean, I have a pretty big personality. And I still have been in that doctor's office, and I'm like, Oh, my God, like what's going on? Like, you're coming at me? Like, I don't think she was coming at me. And I think I was somewhere deep down. I knew I'm not doing well at this, you know, like, Arden was little I didn't know what I was doing yet. And any kind of feedback felt attacking because I was I was vulnerable. You know, like, I was in a bad spot. I didn't know what I was doing. I was pretty sure I was hurting my daughter. I was starting to think about long term stuff. Short term, you know, was a mess. And then that's where I don't know. Like, that's where that part of the doctors thing is so important. Like, it's how they approach you. It's like coming at a I don't know, it's like to care approaching a stray cat like kind of very slow. Yeah, exactly. I'm here to help.

Jennifer Smith, CDE 8:48
Right. And when you when you first come into that, that office space with the person who has come in, they've made their appointment time, and they made the time to bring in some records and reports and whatever your question to them is, I'm always asked, I mean, this is my no one. But well, how are you? Do you have time to hear how I am? Like I could I can tell you how I am right. But what is important right here. And now for you to know about how I am what are the biggest things and this goes to the person with diabetes. It's what are the checklist things that are really, really important so that when they say, how are you you can say, well, I'm okay, or I'm doing really great, I've changed this, I've changed that, you know, this is looking much better. So there has to be enough communication to really, to really, I guess, give to that question of how are you? And you have to be receptive of it too.

Scott Benner 9:40
Yeah. In my mind, you need to hear people and really see what's going on with them. And at the same time, you need to be a leader, right and not a leader in the way of like, Oh, God, this guy again, but like, you know, like, right, you know, prior to the podcast, and even in the early days of the podcast, I would do like I'd have a lot have phone calls with people where I would just talk to them about their diabetes. And what I learned pretty quickly, is that often, they don't know what they're talking about. They think like, they think they know what's happening. And they're not right now, you still need to listen to them and hear what they're saying. And then I hear what you're saying, you know, and what I think might be. And I never know what to think. Like, how do you know when you're just meeting somebody very quickly, right? You go back to basics. Yes. You just say, look, let's look at your basil first. And let's say that the easiest question I've ever found is away from food or active insulin. Does your blood sugar sit stable? Right? If If yes, where? You know, if that number is 90 I go, Oh, Basil is probably okay. If you tell me Oh, it's very stable at 121 3151 80 I go, Oh, Basil seems weak to me. Let's fix your basil first. And then maybe this will you know, help your meal Bolus is to work better. And I always say like, you know, adjust your basil. Get it right. Be careful while you're boasting and correcting because now you're adding extra basil on these boluses and corrections are gonna eventually need you know, less insulin. Let's get this right first. Give them a path. You know, once you get your Basal right, go back and reevaluate your meal insulin, your carb ratio and your and your insulin sensitivity. And honestly, just telling people that it mostly works for them, you know, like it's but when you start going, I don't know, let's try this at nine o'clock, like, I don't know what you're doing then be entertaining right now make a different problem. So this next person says, you know, it's a long, it's a long story. But basically, they said, I was basically told I'm probably going blind and probably losing my foot, I got very jaded, which really quickly actually did turn into me being non compliant. I stopped going to an endo just went to a GP to get my scripts. And, and I think that the takeaway here was, that hope is just is very important, and that these initial messages over and over again, I want to say initial messaging sets people on path. Contour next one.com/juicebox. That's the link you'll use. To find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters, I'll click on the Next Gen. And you're going to get more information. It's easy to use and highly accurate. Smart light provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next one.com/juicebox And if you scroll down at that link, you're gonna see things like a Buy Now button. You could register your meter after you purchase it or what is this download a coupon? Oh, receive a free Contour. Next One blood glucose meter. Do tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use. diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US med has done that for us. When it's time for art and supplies to be refreshed. We get an email rolls up in your inbox says hi Arden. This is your friendly reorder email from us med. You open up the email to big button it says click here to reorder and you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives we click on a link and the next thing you know your products are at the front door. That simple. Us med.com/juice box are called 888-721-1514. I never have to wonder if Arden has enough supplies. I click on one link. I open up a box. I put the stuff in the drawer. And we're done. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7. They accept Medicare nationwide, over 800 private insurers. And all you have to do to get started is called 888-721-1514 or go to my link us med.com/juice box using that number or my link helps to support the production of the Juicebox Podcast. So this person thought I'm gonna die anyway. Why try? Why

Jennifer Smith, CDE 14:43
try right? Why continue to go to somebody who hasn't and in this case, not everybody but in this case they weren't being given anything. Positive, valuable. Yeah, to try positive and valuable and applicable probably to their life. They were Being maybe given some advice about well adjust this here, or change this there? Or maybe it was the don't well don't do this. Why are you eating at McDonald's every day? Or why are you doing right? I mean, don't don't badger somebody into a change that isn't really going to make much different? Yes, for that,

Scott Benner 15:20
I get the idea. So I think what probably happens is that jaded doctors who have seen more than their fair share, you know, in their defense more than their fair share of people who are just not doing well, and it probably seems hopeless. And they probably think let's just jump to the end and try to scare them. And, you know, because I've seen that work with a few people. And by the way, I've actually heard from adults who the scare thing worked on them. Well, yeah. And but more people than not say, scaring me just scared me, or scaring me froze me, or it made me think I can't win, right? It's why everything goes back to understanding how insulin works, because in every situation you find yourself in whether it's somebody who's struggling forever, or just starting out, if you give them these these basic tools to begin with, they have successes that they can build on. Right, you know, and it relieves stress. And I think that, you know, this next statement here from somebody said, I wish somebody just would have told me I could have with insulin moved my anyone say, it's funny, they just didn't have that idea, like I was told, seven, two, good a one say.

Jennifer Smith, CDE 16:26
And also almost that the numbers that they were getting, were as good as it was going to possibly get that it was all about almost a stable point of where their body wanted to sit in terms of blood sugar, and that it was going to sit there. And other variables didn't have any impact on that one of them, obviously being insulin, and that an adjustment that's more precise, could actually move the needle in the direction that you wanted to go. Even without adjusting activity or food or anything else. A lot of times it's the right place to adjust the insulin.

Scott Benner 17:03
And how hard would it be to say, look, the ADA recommends this number, but I'm your doctor, I'm standing in front of you, I don't have diabetes, my one sees probably 4.9, you're not going to probably be able to get that but I bet you we could get you into the sixes. And then work on the fives maybe make some modifications to how you eat. Who knows like, right, if you want to go low carb, maybe we could get you in the forest. Right? But when you say sevens, okay? And the only thing is a quarterly report card, and they hit the seven or even I know it doesn't sound crazy, but 7.9 in somebody's head is still seven. It's still sad. Yeah, like I did it. I'm in the sevens in the sevens. But what's your one thing? Will you tell me?

Jennifer Smith, CDE 17:44
Will I tell you Sure. My a onesie is 5.5. Okay. That's what we want. That was my last one. The one before that was 5.6. So really, I'm I it's there.

Scott Benner 17:54
Yeah, right, right. It's there. Right? It's five you have type one diabetes, it's five, five, it's five, six. You know, you manage that by understanding insulin exercise and diet, boom. Like, you know, if I didn't want to exercise if I was Jenny, but I didn't exercise you probably have a six two.

Jennifer Smith, CDE 18:11
Right? Sure. Yeah, and be using more insulin than I use respond to food differently than I respond. Absolutely. They're those big variables that you do have to understand. But mean insulin is, it's the mover of blood sugar. I mean, right. And if you have it squared away, and you have somebody to guide you, I think, thanks to the podcast, obviously, I think people have a lot better understanding of insulin, and the fear component gets removed and they're willing to do their own trials of changes. But then there are still a good majority of people who are not confident enough about making adjustments and are still going back to their clinical team to make those and because they're not made maybe at most every three months you're left with this idea of again, I'm seven I'm seven one I'm you know, whatever and the doctor says that that's that's in a really great place or it's come down so I'm I'm clearly moving in the right direction and you are but it could be improved even further you could be getting closer to what we would hope for getting in the range of people without diabetes safely. Of course, you

Scott Benner 19:21
know, and people I think generally speaking humans like reaching right they like seeing something out ahead trying for it and succeeding. It feels good it works it I mean, we spend so much time talking about oh, I'm scrolling it's you know your dopamine your D you can give people a dopamine hit with a with a good blood sugar. Like if somebody came in to this conversation right now. And they said Look, you guys are talking about a seven a one c minus 10. I you know, I'd kill somebody for a seven you don't have to kill somebody for something first of all, you just you know, need some changes insulin, yeah, just make some changes in your settings and how you're, you know, timing your insulin. That's it. I mean, honestly, good settings Pre-Bolus your insulin a once he's somewhere in the 60s, you know, it just, it really well be if you're in the 10s, you don't know what you're doing. That's all for a doctor to look at that and say, Oh, I give up on this one. If you knew what I knew, or what Jenny knew you would go, I could fix this tomorrow. I can, you know, like, what are we doing here? So,

Jennifer Smith, CDE 20:23
and the unfortunate thing about those a one C, there is sort of a range, right? A onesies over I think it's over about a nine or a 10 really is a deficit of lots of basil and Bolus, if there's a deficit, definitely. And the person with diabetes may not know what to change the clinician, the one with the degree and all of the, you know, panels on their walls and whatever. They're the ones that should be able to say, Hey, your agency is here. Clearly, there's not enough insulin and you might then start to add insulin to hopefully get those those numbers down. Anytime that a one C is kind of like above where you'd want, let's say it's above seven, but kind of under that 10, then we start looking a lot more at mealtimes. And we start looking at, okay, as you said earlier, if you can float around at a at a stable blood sugar, even if it's 120, right, and you're safe there, then your Basal isn't really the wrong thing. What we end up seeing is these major excursions around meal times, which could be relative, that the dose is not necessarily wrong, that it's the timing, people haven't been taught the right timing of their of their dose, it could be both it could be timing, and that the dose has never been appropriately adjusted. And so those those a one sees as a, you know, just average, could be brought down by attention in a different place.

Scott Benner 21:53
And a little trick to figure out if that's the case is if that stability is higher than you want it to be. But like Jenny's saying, it's very stable. If you missed on a meal prior, like she's saying, you might end up at 120 with a perfect basil. And you know, Basil is doing its job perfectly, it's holding you steady. It's not its job to shoot you down. But I tell people all the time, if you see that stability higher, and you're not sure is this my basil, or did I miss on a meal corrected. And when it starts to go down, if it goes down and stays down, you missed on the meal. If it goes down and it comes back up, that could be your Basal being two weeks. Yep, it's a simple way to just check to see what's happening. That's the thing, you should be able to empower people with this, this person says I want my doctor to not be so by the book, I'd love for her to constantly be educating me, let's talk about off label use for medications if we need to, I'd like her not to be afraid to help me change my settings, to empower me to change my settings. And just because I do have a one C that's lower, it doesn't mean that I don't need help ever. Right. And I made a note next to that, when I said you gotta be a guru a little bit. Like it's, I mean, the by the book thing, it's not going to work for this, like you need their variables, you need your information, need the tools, you need the understanding of how to use insulin, they all have to work together, you can't just say, you know, 15 minutes 15 carbs, like that kind of stuff. It's right, it's too bare bones. It doesn't it doesn't do the right things for you know,

Jennifer Smith, CDE 23:17
and it I think a lot of the beginning tidbits of information that are given, they're just a starting place, kind of like the 1515 rule, which is really, really old school, obviously at this point. But it's still being taught because it's a, it's a quick and easy teach. But then you have to end up going beyond that as the clinician when you can say, Okay, I've taught them this, they're using it. But now my job is to say this isn't working, maybe you need less, or maybe we need to consider a change to this. Or maybe we need to, to do this and in the visits with people, then you have to bring that in so that they can see why you're making suggestions, or changes. Don't just give them a directive and expect them to move forward. They need to understand why What are you seeing? What are you seeing that suggesting I should change this or to change that or to think about this differently? Because otherwise you're just sending them out with a map that doesn't apply to their life.

Scott Benner 24:19
I wonder if doctors don't feel almost embarrassed to talk out loud to think out loud. Which would be a shame because it's a large part of how I taught my daughter to take care of herself was just everything that we were doing was spoken. Hey, it's time for you to change your pod. You know, we don't want to leave it on too long. Because you're only supposed to leave your cannula in for you know, about three days. So let's not wait. Let's get that off now. Right. Oh, you know, when we put it on, we'll watch your blood sugar. If it goes up, maybe we'll have to put some insulin in with a new site next time. My daughter doesn't know it. She could not sit down and explain diabetes to you. But she can do it. Right Is it To

Jennifer Smith, CDE 25:00
become habit, because she just knows what to do,

Scott Benner 25:02
because I'm narrating her life around diabetes out loud and not all the time. Like, I don't want people to think, oh my god, this guy up this kid, you know what I mean? Like, they just don't just, you know, like, at times when something was happening, we do it, you know, a plate would come out, I'd go, hey, you know what I'm thinking here, we're going to Bolus you think about how much you think it's going to be. And then we'll compare, you know, and she'd say, I think it's 45 carbs. And I go, Alright, where do you see the carbs? You know, don't don't just guess the number. Tell me where you see it. And then I'd say I see what you're seeing too. But I think you're forgetting the breading of the chicken. So let's throw in like seven more for the reading. And that over there is fried. And so I think you're gonna get a little bump later from from the slowdown and your digestion. So why don't we put a little more in for that, too. And then years later, she just knows how to do it. Like it's not. I think that there's that the doctor brain learns differently. I imagine. I don't know, I don't have it, I have more of what you might call like, an artist's brain. Like, I just, you know what I mean? Like,

Jennifer Smith, CDE 26:05
yeah, I'm a, I'm a talker, when I, when I work with people. And I'm also when I respond to email requests or inquiries about data and whatever. I have very lengthy, like emails and a very lengthy discussion, because I talk a lot. And I want you to go forward with why I'm suggesting a change. Or even if I'm questioning, hey, let's work together. What do you think you know, your life better than I know, I see that we could do it this way. But I also think that we could do it this way. What do you think you'd like to try first, so it gives some options, and it gives them the ability to move forward out of our visit together? To try something without checking back in? Yeah, right away, or without going three months, and then saying, well, it didn't work. I didn't know what else to do. So I just kept doing it.

Scott Benner 26:57
Look, I don't know how many doctors are allowing emails. Now. I guess there's a lot of portals where you can message people. But people need to feel autonomous, like they just really do they need to like and if even if it's a new person, and you're like God, I can't let them make too many changes. They don't know what they're doing. I mean, they can move their Basil 10%, like you don't I mean, like you could, you could give them a little bit of freedom so that they could like trial and error out a little bit. And I'm assuming that the word error doesn't sound right to a doctor. But that freedom that you give them, it's how you get to where you're trying to take them, like you can't shackle them the whole time and then go, I don't know why they don't run, you know what I mean? Like, like giving

Jennifer Smith, CDE 27:36
somebody this dose adjustment, maybe you explain it, but then saying, You know what, try this for two or three days. And if this isn't quite enough, or it's just too much, then we're gonna give you this next option, giving them handing it to them and saying, here, here, here's an option. It's not just you're stuck at this. And you know what, for further collaboration, it's checked back in, send me an electronic message, and let me know, did it work? Did it not work, I am happy to check back in with you to make sure that I give you another suggestion, or to see that it actually is safe to continue changing things. Right.

Scott Benner 28:11
I think also, if you don't believe that conversating with people can lead them to understanding things that you should, I'll tell you this little story. So Jenny, and I have made all these different series together. And the feedback overwhelming, I'm talking about overwhelmingly like hundreds of 1000s of millions of downloads, right? And people come back, I listen to this my one season the sixes, blah, blah. And I even to the point where I sometimes think, what the hell did we say in there? You know, you mean, so like,

Jennifer Smith, CDE 28:40
what really hit for that person, like God, like,

Scott Benner 28:44
I don't think I know that much about it. So I did this thing recently. And it's gonna come out on my social media at some point. But I chat GTP like AI has gotten to the point now where it's fascinatingly good at breaking down conversations. So behind the scenes, I'm feeding the transcripts of everything you and I have done together into AI, and I'm telling it just one simple thing. What are the key takeaways for people living with type one diabetes? And it writes in bullet points, my brain doesn't write in bullet points, but it does. Wow, that's cool. It's so good, Jenny, that when I put it in front of you, you're gonna think you wrote that list yourself. Or you're gonna think I wrote it, or you're gonna think we wrote it together. It's really technically

Jennifer Smith, CDE 29:28
we kind of did. All we're doing is feeding information and something is putting it together and very concise.

Scott Benner 29:35
It literally can read through it and filter out all the bowls. And just come back with this is what was spoken about. I'll tell you this, we you and I did an episode called setting Basal insulin, the math behind Basal insulin or something like that. You can ask the transcript, what your Basal insurance should be based on your weight and a couple of other things. And it just from our conversation knows the answer. It figures it out for you. That's insane, right? But here's the plan. Here's my bigger point. I know I'm helping people with this conversational style. But I also know there are some people who don't enjoy this conversational style, right? So I'm finding a way to give that information to them the way they want it, doctors have to do that, too. You can't talk to people the way you learn, right? I'm sure all your engineer patients are probably thrilled with you. You don't I mean, like, seriously, but if I came in and you started bullet pointing me to death, I don't know what to do. If you told me right now to take three thoughts that I understand and write bullet points about them, I guarantee you, I'd write them out in a paragraph instead, right, and then I'd have to stop and break the paragraph apart, and then reward them. So they look like bullet points, because my brain doesn't work that way. It's really something I

Jennifer Smith, CDE 30:41
mean, what you're kind of boiling it down to is what I feel about. Educating the way that I do is getting to know a person, I understand that I have a little bit of a different way to do that. And you know how we work with people. But in an office space, time is really the constraint, I get that. But because I have the time, the nice thing is that I could tell you what impacted someone's blood sugar in one way compared to another's, because I know them, I don't know them just their name. I know them, I likely know the siblings in the house. And I know that this child goes to a grandparents house, you know, four times a week, and they're served these things versus at home, it's different. And so those are some of the things that also go into management, that may not be a setting change. And that you have to be able to learn in order to educate, or to be able to teach a strategy that's applicable to that one person. I know that I teach differently, a little bit differently for each person I have the opportunity to work with, because I meet them where their need is.

Scott Benner 31:55
I think if a doctor hears you say that and thinks I can't do that, I think yes, you could. You can you just need more practice talking to people. I swear to you just call me like get on the podcast, and we'll chat. And just after an hour, you'll be like, Oh, I can just conversationally talk about diabetes, and people understand it. That's crazy. I'll do that. You know, it's it's so doable. Jenny, this person here says, If you don't know something, just tell me you don't know. Yeah, honestly, would be the bedrock of our of our relationship. And I actually just interviewed someone recently who had that story, she asked a question about her pump, to her doctor. And instead of Bushcare, were sending her to go and go watch a YouTube video. Which, by the way, there are a lot of comments in here from people like do not go tell me to watch a YouTube video, like Teach me how to do the thing. Okay, so if you were the doctor don't know how to do it. I mean, hey, why don't you take a weekend? You know what I mean? Cuz kind of your job. Be honest. And so anyway, this doctor says, I don't know, I'm gonna find out and come back to you. And then they actually followed through and did it? Yes. And it was a big deal for this lady. You know, that would be a

Jennifer Smith, CDE 33:10
that's a big deal for me. I mean, I have fired essentially, or just not gone back to clinicians through the history of my adult life as choosing my own clinical team. Because I got the sense very much that they couldn't answer my question, they kind of be asked around not knowing how to tell me that they didn't know. And so I was just like, Okay, I'll find somebody else.

Scott Benner 33:35
I wished my doctor not only knew how to tweak, you know, my diabetes, about my lifestyle, like, have like a, she actually says here, I wish you had a primo list of referrals, mental health, you know, nutrition, stuff like that a CD, they actually knew what was there was willing to work with you. And listen, I'll say this, I know a number of doctors privately. Don't just say like, oh, there's a guy over here. I know the girl in this practice, and you know, they're crap. And you send people to them anyway, because they're part of the system or something like that. You just create another problem. Again, say, you know, I don't know anybody that's going to fit that bill should ask around a little bit, or call some offices, ask some leading questions. How do you guys deal with this? You know, like, pick on your own? But yeah, this person's like, you know, please just help me find other practitioners at times. If you can't do it, just say, I don't know, let's get you to this person.

Jennifer Smith, CDE 34:28
And sometimes that takes from the clinical or you know, the physician angle that that means that even if you can only refer to people within your organization, then know the people that you do need to refer to, right know the mental health specialists in your organization, get to know a couple of them. Who would you really click with who really would be great and who was kind of iffy and totally wouldn't be somebody for diabetes to talk to right. Get to know kidney specialists get to know good cardiologists get to know your system. I'm because I guarantee that there's not just, there's often not just one practitioner to refer to. And if you get to know those different teams, you'd have a better list that you can easily pull out or look up on your notes on your phone and say, you want to see this person, you could see this person, but they're not my first choice. Why? Who cares? It's important for the person that you're telling.

Scott Benner 35:25
And if you don't think that's important, this person says, Look, I'm a researcher and a reader. So I ended up clashing with my doctor who just wanted to take complete control and not empower us at all. If you're a doctor is like, that's how I want it, like, I'm gonna crack the whip, and everybody's just gonna do what I'm gonna say, this person said, I switch practices because of that. On top of that, she was told that her and her daughter would difficult patients. Yeah, for wanting to understand how to take care of themselves, they'll think about the psychological ramifications of that. If you're like, not everybody can speak out, here's a person who spoke up, right. And but most people aren't head down. A lot of people are head down, right? If you dominate them, they'll take that, and they'll never stick up for themselves ever. And you will be directly responsible for the poor health outcomes that they have. And you won't think so you get around at a party and tell your tell your friends, what a great job you're doing for everybody. But this is how these people could feel.

Jennifer Smith, CDE 36:20
Yeah, I think it kind of goes along with a lot of I wouldn't say a lot, but maybe half of the time I hear from parents, especially where their pediatric practice really wants to do the load of the adjustments. They really don't want the parents stepping in and adjusting and doing things in between the visits, which may not be close enough together, as their child is growing. And all those changes are happening. It's not soon enough. Now there are really awesome practices that have a lot of close, you know, I guess communication, but then the other ones do a lot of hand slapping, I did you change this? I would you adjust that. I told you not to do this, or you know, that doesn't help and long term. If the child is in the room, hearing those comments, they're also now learning that they don't have any voice in their own health.

Scott Benner 37:16
I don't know what I'm doing. And maybe worse, my mom doesn't know what she's doing. Right. I think that's a thing I see all the time, especially when we speak in public Jenny, and, you know, I, you know, I'll go to the parents and all, you know, a license stuff out for them. And then you go to the kids, and you're like, hey, you know, I told your parents and stuff today, and maybe they'll and the kids are like, my mom does not know what she's the devil coming out and say it like, she's tried three things. My one seesaw seven, maybe that's the most just the most terrible thing is taking the a child's you know, confidence in their parent away, you know, like, what's gonna happen at the end of this series, Jenny, and I gave it away a little bit here. But there's going to be an episode where I'm just gonna read the takeaways for everybody. And I'm gonna go over them with other people in like, kind of bonus episodes or supporting episodes for this series. In the end, as a doctor, empathetic kind. If you don't know something, figure it out. Teach people how to use insulin know how to talk about that very fluidly. It's all you have to do. Like, like it just, there's not much more to it than that, then let it be a conversation and give them give them power. Now look, do you have some people who, you know, you're like, Listen, if I give them power, they're gonna kill themselves in five seconds. Like, I'm, I'm not saying sure those people, you know what I mean? But those people can also be helped with basic tools, and a little bit of like, carrot and stick. Like, there's nothing wrong with saying, Hey, you're a 10. No problem. I think in six months, we could be in the eights. Like I'm going to help you get your settings right, then you do a couple things for me, we'll come back do another blood draw, we get you down to the AIDS. Now we're off to the races. I don't see why a year from now you couldn't have a six a one say, like, give people something to work towards? Like, we're basically just ants, Jenny. Humans are not good without a task. No, they're not. No, you gotta give him something to do. You know,

Jennifer Smith, CDE 39:15
right. You know, and from, from the doctor standpoint, too. I think when we're talking about diabetes, you're talking about a specialty. Right? You're talking about beyond just general practice. You've chosen to go into something that requires you to keep up with the changes that are happening. And this is very specific. And you might be you might end up being an endocrinologist who has nothing to do with diabetes and then that's great. That's your practice is not specific to that but if it is, you should be able to answer a question about a device. You should be able to keep up with what medications what is changing how to use it, who to use it for, you should be a able to answer questions, because you've chosen to specialize, it would

Scott Benner 40:04
be like if I climbed into a Nissan ultimate, it said driving school on the side of it, got behind the wheel looked over at the person in the other seat and said, which one of these makes it go? And you said, I don't know. I don't know. Well, then what am I paying you for?

Jennifer Smith, CDE 40:18
Right? Absolutely, I just I don't understand. If you've chosen, as I said, if you've chosen to specialized, you need to know your specialty.

Scott Benner 40:29
Jennifer, there is no doubt in my mind, that if I wanted to make a living a different way, I could offer private courses to doctors. And I think in three hours teach you how to take care of your patients. I know you could do it, too. There's a lot of people that could do it. But my point is, if that could be done for you, you could probably do that for yourself. You know, like you don't like go like find out that one of the things I'm always fascinated by, if someone comes in the office, they figured it out, they get their agency where they want it, they've got these great stable graphs. And the first thing that happens is Doctor yells at them out of fear. You're too low, you're gonna have a seizure. What about saying, hey, what didn't you do? Right? Could you tell me what you just did? Because I got to be honest with you. I didn't see this coming. Right? It happens all the time. And if they say something like, I listened to a podcast, don't yell at them and say the internet's not a good place for you to learn. Because your doctor's office hasn't been a good place for them to learn. They're trying to figure something out. So in the end, Jenny, meet people where they are, give them agency, and for God's sakes, think before you speak. Yes, leading a sentence in the wrong direction leads 15 minutes into the wrong direction. Start Strong.

Jennifer Smith, CDE 41:38
I wish to my point, don't point fingers do not

Scott Benner 41:41
point fingers at people like it's we're in this together and give people I can't believe I'm going to say this. You have to give people their flowers to when they do well. You got to like and it can't feel phony. You got to really mean it. You know, this is amazing. I know how much hard work this took good for you. I think there's more keep going. Right? And

Jennifer Smith, CDE 42:02
it doesn't have to be with what you what you see as where you would want them to be. If you've got somebody you've been working with who is so fearful of Lowe's that they run blood sugar's at 250 or 300. And now, your work together whatever education they've provided themself, now they're averaging a blood sugar around 190 or 200. That's a give them flowers. That's not a well, we really want to be lower than this. Oh, no, no, no, they've achieved something like, let's keep the ball rolling, right, you have to give them good positive reinforcement, regardless of what your down the road, like goal is for them. My

Scott Benner 42:44
daughter's first endocrinologist was brilliant. I could tell by talking to her. She never helped me once with diabetes. Just stood in the room smart, and said smart things and

Jennifer Smith, CDE 42:56
didn't help it that didn't translate into helping you. Oh, no,

Scott Benner 42:58
no, no, I was in a panic. You know, it might have been easy to say things like, hey, if your blood sugar is too high, you might not have enough insulin, I would have gone. Oh, that makes sense. Thank you, you know, Jenny, there's a note here from you that says Please don't look at a static number and then say everything is great.

Jennifer Smith, CDE 43:19
Right. And I wonder if I don't know if I gave context to it. But I think that I think that I was possibly talking about a one C two there. Because it is it's we understand that a one C is just an average, you really do have to get into the whereas the agency coming from what are the kind of the data points that are pointing to this because then you have more room as the clinician to say, Gosh, you came in your agency is now you know, 5.8, and it used to be 6.8. And in my mind, that's lower than I want it to be. But gosh, that a Wednesday is really stable. Look, you have like less than 1% of the time low, you have a standard deviation that's like those, those little pieces that go up to make that one standard value. That's really important to

Scott Benner 44:10
look at. I'm gonna run through a couple of things here at the end for people, I wished my doctor was a resource for other resources. Tell me, why did I have to this person says directly? Why do I have to find this podcast on my own? Listen, there are plenty of doctors and I want to say thank you to all of them that recommend this podcast every hour of every day. The Facebook group, which gets 150 new members every four days is overwhelmingly they have to answer a couple of questions. It's a private group, right? One of those Where did you hear from this from my physician from my doctor from my hospital? Like it's a fair amount of people. So thank you to all of you doing that. Obviously, I don't think we're talking to you. But you know, for everyone else, if you don't know, send me somewhere that might know and don't do that thing of like, well, I don't know what you're going to hear when you get there. Because the thing that's happened thing now is bad. So, no, I don't know like what could go wrong now maybe he wants he's nine and a half. I'm on the fast track here. You know what I mean? Like, good, go try something like whatever happened to like, I don't know get out there and do something like sometimes just doing anything and seeing a little bit of a positive return is enough to supercharge and get you going again, even local support networks, people are asking here like, please know where I can go meet other people. My teenage daughter just hears you're doing Oh, this is I think we've covered this in another one. But there are people who are looking for more, okay, so don't just look at their six five, a one C and go You're doing great. Because they might want to do better. And they'd like to hear from you. I mean, they know they're doing six fives. Great. They know they're doing great. So there's a double edged sword there. You could lull somebody into complacency. But what this person says specifically is when my daughter hears that, then I go home and try to say to her, Hey, listen, we should try Pre-Bolus. In five minutes longer. She goes, Hey, doctor said we're doing great. So yeah, you took away her desire to try to help herself. There's a way to say you're doing well. But there's always room for improvement. So here's some ideas like that kind of stuff. Right? Real quick. They don't make us feel bad about my agency Don't say things like, well, it's okay, this time, please don't use guilt as a communication tool. And then here says this is some feedback from somebody else. It just kind of gave me like a stream of consciousness that I want to kind of end here with she said, relationships, person to person person, the diabetes, clear relationship expectations, level setting, meet people need to feel safe. freedom to express things is very important. psychological safety is a big part of how you can get these visits and your relationship to work in everybody's favor. That's kind of where I'm at today with communication. If you have a minute, I'm going to share something with you, Jenny. Okay, go ahead. Anything you want to say or finish with before I jumped to the end? No,

Jennifer Smith, CDE 47:07
I was actually going to add one thing to that list is the be supportive of the caregiver. Be supportive of a caregiver, I talk a lot about like parents as the caregiver for kiddos, and be supportive in the way that you would be willing again, this goes along just communication, hear what they need, and also hear what they've tried. And if the child or the teen is in the room, be supportive of the efforts of what the parent is really trying to do. So again, you you may have some things to share with them. But really try to prop them up with all the effort they've been putting in. And if they come to you with questions, being able to again, communicate back in a way that they can understand how could this work? Could this be something that would be better, just really support them?

Scott Benner 48:05
That's a perfect way to end, I was going to share one of the takeaways with you. So from Episode The second episode of the Grand Rounds series is called diabetes diagnosis. And I asked an artificial intelligence to give me the key takeaways from that episode. And it said doctors and regular primary care settings may diagnose diabetes due to the rarity of the condition and the similarity of symptoms to other illnesses. misdiagnosed excuse me, it is important for patients to clearly communicate their symptoms and concerns when contacting their doctor's office. misdiagnosis or delayed diagnosis can lead to complications such as diabetic ketoacidosis. Doctors should be proactive in ordering appropriate tests such as blood work in your analysis. When patients present with symptoms that could be indicative of diabetes. Patients should not be dismissed or ignored when they expressed concerns or symptoms that could be related to diabetes. education and guidance on diabetes management should be provided to patients at the time of diagnosis, including information on insulin use, blood sugar management, and the impact of diet and exercise on their blood glucose levels. Doctors should be aware of the impact of their words and actions on patients mental health and well being. Collaboration between primary care and diabetes specialist can ensure comprehensive and effective diabetes management. Patients should be directed to reliable sources of information and support such as diabetes education programs and online communities. And doctors should continuously update their knowledge and skills and diabetes management to provide the best care for their patients. That's what AI picked out of your mi conversation. Isn't that fascinating?

Jennifer Smith, CDE 49:36
Well, and what it actually it's what's interesting about it is that it it sounds like the summary that you'd get in like a research project. We looked at all these things in 3000 participants in this study and these are the key takeaway points in order to be able to provide somebody with diabetes, the right care. That's what it sounds like.

Scott Benner 50:03
I'm also almost I'm being boastful a little bit here if I'm being honest, because you and I, you're a lovely person who comes on my podcast. I mean, like, We're not sitting in the same office talking to each other for a month about what we're going to do, you and I pop on when you have free time and free time is in quotes, right? Like when you you jump on here and I go, Hey, Jenny, we're going to do that Grand Rounds thing. Let's do what happens when you're diagnosed in your doctor's office today, and you go, okay, and then we chitchat for five minutes about our lives, then we have a conversation that when you asked a I provide key takeaways. That's all it said. That's what he came up with. My point is conversationally, is a good way to get out good information, right? Absolutely. That's how people's brains hear storytelling, not you reading a bullet point list of them. So Right. Also, by the way, in this is pretty far off. But that's not all i Sai. What I said was provide key takeaways in English, Spanish and Hindi. Wow. And it did that. So I finally found a way I think people are always asking for this template in Spanish is a big one. And the podcast has become very big in India, there's a ton of dialects so I don't I just picked the one that I think is the most kind of central, sure to imagine these key takeaways in other languages for diabetes, Pro Tip series for bold beginnings for that kind of stuff. Gonna be nice. So Scott, he's on it in 2024 door.

Arden has been getting her diabetes supplies from us med for three years, you can as well, US med.com/juice box or call 888-721-1514. My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com. To us Med and all the sponsors. A huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The Juicebox Podcast, learn more and get started today at contour next one.com/juice box. I have one thing to tell you. But I'll do it after the music close.

So I waited until 50. People found this on their own to say it out loud. But I've added a thing if you're listening in Apple podcasts, you can actually subscribe to the podcast pay a fee. Now the whole podcast is free. So don't now you're like, Well, why would I do that? Scott, if it's free. If you pay the fee, which I think is like 599 A month or $59 a year I think that's about it. If you do that you will get currently you will get the bowl beginning series without ads and you will get the diabetes Pro Tip series without ads in it. And so far one episode that has all the curses at it. Now, why did I wait until 50 people signed up on their own to bring this up. I wanted to make sure it would kind of pay for itself. This is not like a money. I'm not gonna make any money on this. Because the editing on like pulling ads out of old episodes and you know making episodes with curses in it. It's gonna cost money in editing. But anyway, now there's 50 People, I'm going to tell you about it because if I can get if I can get 50 more people to do it. I can add a another series without ads. And we can start offering episodes once in a while that have all the curses in them. So if I go crazy in some episode, we're cursing all the time, and we can afford the editing. I know that sounds weird that it would cost money to not edit out a curse but I have to edit the episode for the regular show. And then that basically means it has to be edited twice to leave the it's not important. This is just it's what it is. It's an added expense. Anyway, if I see this pop up, another 50 People 100 People something like that, then I'll be able to turn to the editor and say listen every time you get one with a bunch of curses in it, give me two edits give me the Kersey and the non Kersey in that way the people who are paying for the subscription can hear the cursing. And as that builds up a listenership that will also afford me the ability to take ads out of some of the more popular series and offer them to the subscribers as well. Anyway, there's no pressure to do this. But you can if you want. Besides what I mentioned, you get I think you get each episode like 18 hours earlier than normal. And ad free bull beginnings ad free Pro Tip series and some random cursing here and there. Anyway, do it. Don't do it. Please, it's entirely up to you. But it's a great way to help me pay for more content. So if you're up for it, you'll see it right there in your apple podcasts that if you're looking for community around type one diabetes, check out the Juicebox Podcast pro COVID 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. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com