#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. 

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

Scott Benner 0:00
Hello friends, and welcome to episode 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

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