#1142 Preach

Dana is the mother of a 15 year old daughter who was diagnosed with type 1 diabetes just a little over 2 years ago. We talked about food issues and miscommunication at diagnosis, depression, eating disorder and DBT therapy.

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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 1142 of the Juicebox Podcast.

My guest today is the mother of a child living with type one. Our topics are going to include food, depression, eating disorders, and we're going to talk a bit about a really not great diagnosis story. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. When you place your first order for ag one with my link, you'll get five free travel packs and a free year's supply of vitamin D. Drink ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. Did you know that men and men of color particularly are the least likely to sign up to participate in research. In order to make advancements in diabetes treatment to address the needs of everyone with diabetes, it is important that all people are represented in research. The T one D exchange is seeking males of all ages and backgrounds to sign up for the T one D exchange registry. Once enrolled, you will be notified about other type one diabetes research opportunities like surveys, focus groups and clinical trials. So if you are a US resident male or the caregiver of a male US resident, the T one D exchange is looking for you t one D exchange.org/juicebox. US med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years. You can as well. Us med.com/juice box or call 888721151 for use the link or the number get your free benefits check it get started today with us med this show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash juicebox

Dana 2:51
Hello, I'm Dana. I am the mother of a type one diabetic. It's our daughter who just turned 15 and will be entering her sophomore year of high school.

Scott Benner 3:01
Okay, your 15 year old daughter was diagnosed with April of 2021.

Dana 3:05
Our first kind of getaway vacation post COVID. Okay,

Scott Benner 3:10
so a little over two years ago. Yes. All right. She's 15. Now you said, yeah, she

Dana 3:15
just turned 15 over the weekend.

Scott Benner 3:17
Was there any indication that diabetes was in your family or that this might happen? No,

Dana 3:22
not really, although Oddly, the great aunt that she's named after. I do remember stories that you know, she takes insulin. But no one ever said she has diabetes or she has type one diabetes, or she has type two diabetes, she would just sit in a chair and drink gin and apparently she had insulin in her refrigerator.

Scott Benner 3:45
You and I are gonna have a lot of fun. I said, Is there any indication that this would happen? You said no. Except for the fact except her diabetes and took it? Yeah,

Dana 3:53
but we don't know if it was type one. I don't know. So long ago, we bought her sugar free candy. And she had she had insulin.

Scott Benner 4:01
Did she mix the candy to the gin? I possible makes it sweeter.

Dana 4:09
Why wouldn't she right? Yeah,

Scott Benner 4:10
I mean, honestly. Okay, so nothing that you were on the lookout for. So what were your indications that your daughter had type one.

Dana 4:19
Nothing was really on the radar. And so we went on this spring break trip in April, and we went down to the Dominican so we live in New England. So of course we've been bundled up, you know, all winter. And come April we go to the Dominican. It's our first getaway after COVID and we see her in a bathing suit and she is skin and bones like every little bit of muscle is off of her and she was a she was an athletic kid with a very solid, just good build, you know? And we start in a bathing suit and there was not much there. It was scary. And my husband actually noticed it first and he said do you think she's too thin? And I didn't even look Got our I just didn't know, kind of like, Oh, can you be to fin and then and then I looked at her and I was like, Oh my God, she's really sick like something stairs going on. And I immediately jumped to she must have an eating disorder. Okay, so we spent that whole vacation like, cramming her full of doughnuts and surely temples and just, you know, me questioning her like, do you ever throw up after you eat? You know, do? Do you ever you know, are you ever hungry and you don't eat and, you know, I was just leaning all into my teenage daughter has an eating disorder. But I do remember laying in bed with her and trying to like, go through the possible list of things that it could be. And she says she remembers me,

Scott Benner 5:48
can I so before we move forward when you were when you were talking to her about like eating disorder stuff, right early on, where you saying to her, I think you have an eating disorder? Are you being very slick and talking about it?

Dana 6:00
Fully remember, I'm pretty direct. So I probably wasn't beating around the bush a lot. I was probably saying, you know, I am concerned that you may have an eating disorder, she

Scott Benner 6:10
respond to that saying I do or I don't.

Dana 6:14
She responded and mom, I promise I don't mom, I promise I don't get sick after I eat. I promise I've been eating. Okay. And then I said, Well, then, you know, then what else could it be? You know, and we're kind of Googling and she says she remembers me saying diabetes. That's one of the possibilities. I don't even remember considering that at the time. But you know, I remember being, you know, in a stall next to her in the bathroom in the Dominican and like looking underneath to see which way her feet were going because I was just so convinced that she was binging and purging or something.

Scott Benner 6:44
Is that something you did as a child? No, no, no. Okay. Yep. From an after school special. You saw like, what do you think put you on that? So probably

Dana 6:55
probably isn't, you know, she was just, you know, she's a string bikini kids. So she's a kid that would have cared about how she hurt her appearance and how she looks then.

Scott Benner 7:04
Did she know she was skinny? Had she like, then tar? Like, it wasn't something she was aware of. Okay,

Dana 7:11
I don't think she picked up on it either. I think it was so gradual. And we were so bundled up over winter. And looking back. I do remember coming down for school one morning, you know, here in the winter, and she had these tiny, tiny leggings on and I thought, wow, she's thin, you know, but I was I was a very skinny teenager. So I just assumed she's a skinny teenager, I was a skinny teenager.

Scott Benner 7:35
Yeah, I gotcha. Okay, so we get to the point where we're now looking into other things. You're just throwing whatever comes to the wall. But I mean, you go to a, do you start thinking about going home? How does that strike you?

Dana 7:47
Well, not really. I mean, she was exhausted, she slept a lot, she did not enjoy the vacation. But we've never thought we need to like get out of here immediately. So we finished the vacation, we came home, I started kind of rummaging through her room a little bit. And I did find a drawer beside her bed that was packed to the gills with food wrappers and juice box wrappers and, you know, things that to me just increased my suspicion that there was some type of binge disorder going on. So I was going to call the pediatrician anyway. But I think I don't know if I found the drawer food first or I called the pediatrician first. I think I think we got home on a weekend and I found the drawer food. And then Monday morning I called the pediatrician and I said, I think you know, our daughter has an eating disorder. And I explained the scenario and they said, I think you're probably right, bring her in Monday morning, we'll probably refer her to the Walden center in Eating Disorder Center up here. And that was the plan. So you know, Monday morning, we packed our bags for school and work. And we had like an ATM appointment with a pediatrician. And we talked for a few minutes, and then they did urine. And I guess her ketones were just spilling over. And her glucose was off the chart. And the pediatrician came back in the room and said I don't know how to tell you this, but your daughter has type one diabetes and you need to go to the hospital immediately. And then I needed to juicebox because I almost passed out. Got a little lightheaded. Did you? I did they laid me down. And then they were like, Okay, now you really need to go to the hospital. Even don't stop for food, don't do anything go straight there. They're waiting for you.

Scott Benner 9:27
You know, in the in the 50s or the 40s they would have said you got the vapors that would have been nice.

Dana 9:33
Even better than crappy juicebox

Scott Benner 9:36
that was very big and black and white movies. They would have sat you down and put a parasol over your head it would have been lovely. Yeah, so you pulled yourself up. And yep, do we drive do we take an ambulance what do we do? We

Dana 9:49
drove we drove wasn't far we drove like 20 minutes to our Children's Hospital. Okay, and they were waiting for her. It was perfect. They just brought her right in. You know she was in TK obviously and And they kept her in the ICU overnight

Scott Benner 10:02
but she was tan nice and tan we were all saying you guys probably looked a little ridiculous like glowing like Hello. So okay, Did you apologize to her in the car on the way to the hospital. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G voc hypo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use Tchibo Capo pen before an emergency situation happens. Learn more about why G vo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma visit G voc glucagon.com/risk For safety information. diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US med has done that for us. When it's time for art and supplies to be refreshed. We get an email rolls up in your inbox says hi Arden. This is your friendly reorder email from us med. You open up the email. It's a big button that says click here to reorder. And you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives we click on a link and then next thing you know your products are at the front door. That simple. Us med.com/juice box or call 888-721-1514 I never have to wonder if Arden has enough supplies. I click on one link. I open up a box. I put the stuff in the drawer. And we're done. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and the Dexcom G seven. They accept Medicare nationwide, over 800 private insurers. And all you have to do to get started is called 888-721-1514 or go to my link us med.com/juicebox using that number or my link helps to support the production of the Juicebox Podcast for thinking she had an eating disorder you don't remember do you don't remember any of this.

Dana 13:00
I don't remember that. I remember sitting in the backseat with her but I don't remember everything I said but I do know that, you know eventually at some point I apologized for for missing it because, you know hindsight 2020 All the signs. I mean, I had even taken her for an eye exam because her eye her vision was fuzzy. And you know, we knew that she was chugging water. I mean we all every single possible sign was there.

Scott Benner 13:28
Yeah. Hey, you were in the backseat. Are you a fancy lady? Do you have a driver?

Dana 13:31
I'm not a fancy lady. But I have a husband and he was driving together. Wise all three of your non fancy. Like, oh,

Scott Benner 13:41
look at her. She's in the backseat. Amazing. We're going to the hospital now. Bring this talk, please. Then come back and carry mother to the car. No, how long? Have you guys in the hospital for

Dana 14:01
only a night. I mean, she rebounded pretty quickly. I mean, they didn't start us off in the ICU but they they put us up there hurry when he was high. She was 16.6 and we spent the night in the ICU and the next morning. She was coming around and she was hungry. And I think you know we were waiting forever for them to give her allow her to have some solid foods or applesauce or something I don't remember but um, they discharged just that next afternoon to go to like an off site location about a half an hour away to get our you know, five six hours of education that we probably end up leaving the hospital around one of the next day packed with up a sandwich to to go practice with

Scott Benner 14:46
Wow, that's crazy. Just one day from from what was there anyone see

Dana 14:51
16.6 I

Scott Benner 14:52
don't understand. What did you feel like you got the bum's rush? No, not really.

Dana 14:58
We everybody kind I wanted to get out of there. And she she was, you know, chatty, and, you know, feeling better. So we can, I'm sure, but I didn't feel like we were being rushed out. Did

Scott Benner 15:11
you feel like you understood what you were doing when you left? No, not at all

Dana 15:16
that they sent but but they sent to us for five hours on IG. So that's the deal, like you get discharged at the Children's Hospital. And then you go to, you know, the endo center that's associated with a children's hospital. That's, you know, like about a half an hour away. And they're all there waiting that you know, the team of educators and so it's a whole class that you do immediately before they actually let you go home. I

Scott Benner 15:38
say, like fantasy island when you pull up, there's a bunch of people out front and white coat.

Dana 15:43
There was no red carpet. Well, we had a really dry turkey sandwich in a bag of pretzels.

Scott Benner 15:46
There's no chance anyone listening to this has ever seen Fantasy Island, by the way.

Dana 15:52
There might be some people I don't know. I think we're

Scott Benner 15:55
those of us that have got to be few and far between at this point. Anyway. Okay, so you do your five hours of education. Tell me what that yeah, what that was like to absorb all that? Because that seems like a lot of talking about diabetes on dates. Oh, it

Dana 16:10
was brutal. And I'll tell you, there was a defining moment, I think in that day, that really set her on kind of a sideways course. We have a physically a two diabetes educators, but one was primary. And that, you know, the deal was the hospital packed a lunch for us to take with us to us as the kind of counting carbs exercise. So you know that she's in a wheelchair, they give her a box, like a turkey sandwich and like this tiny, you know, not even the 100 Calorie bag or pretzels, like this tiny little airplane bag of pretzels, and a little bottle of water and she ends up dropping it. And we're like, you know, then we have to wait for them to make her another one. And we felt like finally we're getting out of here. You know, we're headed to the outpatient center. And we have our lunch in front of us and in the girls like now, what do you have for lunch? Like a turkey sandwich and some pretzels. Okay, so the turkey sandwich, let's look it up, how many carbs are in each slice of bread? And you know, she's teaching us how to do the math. And then she said, Okay, know how many carbs are in the bag of pretzels. And maybe it was 12 or something? And then she says, Now, are you going to eat that whole bag of pretzels? And I remember my daughter, I think that can use her name. No one's gonna know who she is. They kind of looked at me like, am I not supposed to eat this whole bag of pretzels? Like, I'm absolutely starving, I haven't had food. I could eat 12 of these bags of pretzels, you know. And so she said to the diabetes educator, maybe I'll eat half. And she was like, okay, so half. So that'll be six carbs. And so we did kind of our carb count. And I just remember Sadie like, almost like the blood draining from her face, you know, like, oh, everything's going to be different. Like, my food is going to be restricted. I'm not going to be able to eat the things I want to eat. Why? Why can't I have the whole bag of pretzels? You know, but we went through the process of, you know, the carb ratios and the correction factors. And you know, of course, we were in di and finger sticks. And you know, you know, I'm

Scott Benner 18:28
gonna stop on this point for a minute, because I'm in the middle right now, of going through this massive document where I'm trying to kind of plan out the next series that Jenny and I are going to do, which is going to be for doctors around diagnosis. Hmm, good. It's just so interesting, because what I keep coming up with over and over again, one of the bigger problems, I don't want to say the biggest problem but one of the bigger problems is that people's communication skills are terrible. Yeah, like just, they're not good at talking. And for me, if I go through the whole rigmarole of them, making me this turkey sandwich or packing this thing up and going through the thing of possible where this is what they're going to use to teach you about the ba ba so it's really important that drop it on the ground. I make me another one. I drive over there. And then I get there and some bright eyed phony lady looks at me and goes so what do we have to lunch? Like? My answer to you is, you know, damn right, well, what's in this bag? Why are you talking to me? Every kid comes here with the mother. Like why are you starting this off on this bowl? Three year old stance is what I would have been my even as a kid I would have been like, no, no, no, it let's not do this. But instead like to me, that's an indicator. It's all fake. And it's pretend and she's going to do the thing. Oh my god. And by the way, the question she asks about the pretzels. She just wants food shaming immediately, immediately. Personally, all the woman wants to do is indicate, look, the bag of pretzels has 12 carbs in it. But if you were just need half of it, that would be six carbs, you would use six, right? So let me explain to everyone listening who doesn't know how to talk, instead of making up a pretend scenario to get your point across, which, by the way, is what most of you passive aggressive people do while you're talking over and over again, just say this. If you're going to eat the entire bag, then give insulin for the carbs for the entire bag. If you think you're not going to eat all of it, then do the math like for say, I don't know, here's half the pretzels take six, or hey, while we're at it, in case you want to know spill the pretzels out for a second look, there's 12 Little pretzels in here. And there's 12 carbs, that must mean that each one of these pretzels is one. So you want nine of them. It's nine carbs, Hey, I'll tell you what, like, if you want eight of them, it's a like you can make your point a different way other than to put your daughter in a false scenario and make her choose. Because this is the possible outcome for some people. Yeah, you put into her head. Oh, am I not supposed to eat all of this? Yeah,

Dana 21:15
immediately felt judged for wanting to eat the whole bag. There was judgment. And just, I guess, you know, almost food shaming, like, well, I guess it would be more of a judgment. You know, she just felt like, I'm not supposed to eat this whole bag of pretzels. You know, and that's kind of how our first grocery store trip when and that that you know that? Sure. That takes us to a whole new problem that we are, you know, had to deal with off

Scott Benner 21:41
a cliff. And my point, my point is, just be direct. And be last. That's all. I am here today to explain to you how to look at carbs on packaging. Yeah, these pretzels, if you eat the whole bag are 12 carbs, D two bags, it's 24 cars, he half a bag, it's six, the sandwich? We don't know because we don't have the package here. So what I'm going to tell you is that a slice of bread is probably around 20 carbs. And you know there's protein in this turkey. We're not going to initially Bolus for it because we think it'll be okay. Because it's a low fat meal. By the way, I'm now giving them credit for understanding fat and protein rises, which I'm sure

Dana 22:23
they did not write right now. But we learned that here. Thank you.

Scott Benner 22:28
And now like, you know, and here we go. And we're going to put the insulin in. And you know what we can eat right away because they wait for it to work and wait for it to work a little bit. So I'll tell you what, why don't we test your blood sugar here, and then we'll put in the insulin based on you know, I'm sure they taught you the math of the correction factor and everything right there. And then pay I'll tell you what, let's wait for 10 minutes and test again, just so you can see that your blood sugar hasn't magically fallen through the floor in 10 minutes. And I've never considered how to teach somebody to do this. And I think that if you gave me three solid minutes to think about it, I could have ended up doing a better job than they did for that song. And that lady stands there all day. And does that for people. Yeah. And she has a really

Dana 23:13
squeaky voice. So it was well then

Scott Benner 23:17
let's drag her out in the street and beat her. No, just kidding.

Dana 23:21
What she should be fired, not

Scott Benner 23:23
very least you don't hire.

Dana 23:24
He was lovely. She was lovely. But she was lovely. And it could have been much better. Right?

Scott Benner 23:30
It's just so listen, my point is this. Obviously no one knows who she is. So whatever. But my point is this is that the way you speak to people needs to be thoughtful. Because everyone's going to absorb these things a different way your daughter took it the way she took it. You might have said that to me. And I might have done the math I might have went okay, what she's saying here is the bags 12. But I paid half I do six which by the way, it makes sense. And I don't really think anyone needs to explain that to me. But I'm glad she said it out loud. I don't know. Like there's just so many opportunities. As I as I like I said go through this document of what people said they wish their doctors would have told them in the beginning that I got feedback from the Facebook group. And then I'm applying what I have learned talking to so many people and trying to I'm trying to build a framework for how to have a conversation about it. And over and over and over and over again. All I see is that people are bad at communicating. Yeah, that's true. Almost every one of the problems could be solved by someone better communication, just doing a better job at that. So anyway, okay, so now we're on our way we're at the grocery store. She's wondering if she could have half of everything like what's going on? Yeah,

Dana 24:46
no, she's we're looking at labels and everything that she wants to eat and she's drawn to, you know, we flip the bag over or the box or whatever, and she's like, Nope, it's not worth a shot, you know, not worth a shot not worth a shot and we end about buying a bunch of really horrible non tasty foods, you know, I mean, we bought like the fake spaghetti like that's like rubber bands and a little bag. I don't even know what all

Scott Benner 25:13
of that spaghetti. So but she's under the impression at this point that she can limit the amount of time she has to do injections. Yes,

Dana 25:20
that that is that is, you know a focus of hers, like, I don't want to have to take, you know, a million shots or get large doses of insulin. So let's try to shop for things that will make this easier. But that's kind of what we walked away with. Yeah,

Scott Benner 25:38
but there she is now 13 years old. And she's standing in a grocery store trying to reimagine everything that she eats.

Dana 25:45
Yes. And she's like, I can't have any of this anymore. It was awful. Yeah,

Scott Benner 25:49
we all know how good kids aren't picking things they want to eat to begin with. So eliminating everything they enjoy, really probably a lot easier. Yeah. Well,

Dana 25:57
it certainly did backfire. No

Scott Benner 26:00
kidding. And on top of all that, and I'm gleaning from your note, you might have been feeling some pressure about this as well. Yeah.

Dana 26:09
Because, you know, I'm the one wants to get this right. You know, and I want to get that a one C. Down. And I want to be, you know, for lack of a better term, kind of the, the control freak or the micromanager, you know, and so, you know, when she would look at the box of, you know, junky cereal, you know, I was gonna write going along with it saying, I don't think that's a good idea. You know, like, I think we should look at keto granola bars. You know, like, I mean, I was definitely part of the problem and that grocery store trip based on kind of my experience in that educational, you know, as well,

Scott Benner 26:55
everyone's freaked out. So you're telling me that it might have been valuable? If someone said to you, listen, yes, you may be making some adjustments to how you eat, but we're not going to make them all today. So don't go to the grocery store and freak yourself out. You know, but I listened even I would say, like, let's not start with Lucky Charms. But like, the way you Bolus for Lucky Charms is not much different than how you're going to Bolus for some really heavy girl like, I don't know, crunchy, like, yeah, healthy cereal either has a ton of carbs in that as well. So yeah, yeah. I mean, it's. And

Dana 27:33
they said, you know, they said in the education, you know, you're not gonna have your Friday night pizza nights anymore. You're not gonna have pasta every Wednesday, like, they were basically telling us, this is going to change the way you eat. So we went to the grocery store with that mentality. You

Scott Benner 27:50
know, what's fascinating about that? Is that again, that's passive aggressive, because these are the same people who meet people every day at their regular appointments, who are coming in there with eight nine a one sees and going, I don't know, my blood sugars are all over the place. I eat pasta. My I don't know. So instead of teaching someone, hey, pasta is going to be a difficult thing to Bolus for. But don't worry, over time, we're going to get your Sass good, we're going to figure it out, you know, like that. It's not going to go likely very well in the beginning. Instead, they tell you, this is so interesting. Everything is set up like this, like the way people avoid things that are hard. Yeah, yeah. Things that are difficult or things that that aren't good for you. Like, here. Here's, here's my best example of this. Do you think drinking to excess is good for people? I do not know. There's an entire billion dollar industry built around it. Here's another one. Dana, do you think cocaine is good for people? I don't think it is. No, you know, we have world wars over the movement of drugs around the planet. It just really surprises me that saying it out loud to someone. Hey, you should really stop with your cocaine. didn't fix it. Yeah. That's yeah, that's amazing to me. Like no more pasta and pizza. Really? You think that did it you got her all straight now good for you. People are idiots. I'm sorry. Yeah, that's all I have. Two days, and I've been going through this document I am so mad at. I'm so upset about the way that this space, tries to address things that by the way, are are very, very manageable. If you understand how your insulin works, like unbelievable that we would jump through all of these hoops and send people down all of these backwards paths in their lives. Instead of just saying, hey, you know pasta is going to take more insulin than Yeah, right says right? Yeah, unbelievable. And

Dana 29:51
there are features like extended Bolus and Temp Basal. So there are strategies that you can use to be able to eat the foods that she as a 13 year old enjoys, you know, yeah, but anyway did it didn't take long, I would say within a month, month and a half she had a binge eating disorder. It was pretty quick. That's pretty

Scott Benner 30:09
quick. Yeah. So, so Is that how that starts, she restricts, restricts, restricts restricts and then can't do

Dana 30:17
it anymore. Awful. Yep. So, you know, she didn't stay out of school long I think she only, you know, we only kept her home for a couple of days. And then we're like, Alright, let's go, we're back at it. So she was back on track, she was back in soccer, you know, back to like walking with her friends after school. And I just remember we would like drive up to Dunkin Donuts, to meet her to give her a shot in the parking lot. So she could, you know, get something at Dunkin with our friends. But it was like, she was diagnosed in April, I would say it was probably May or June, you know, we started picking up on these really, really, really resistant highs. And there were I just felt like I was just pacing the hallway from, you know, to her bedroom pouring insulin on her just, you know, it's so just dumbfounded, like, why can't I get this down what's going on, you know, and she was she would come home from school and grab four or five protein bars and cheese sticks and packs the cookies. And she was binging after school and hiding the wrappers and, you know, wrapping them up in little tissues under her pillow under her bed to avoid injecting, not injecting, she just didn't want to inject. She didn't know then. And you were honestly, we're still kind of dealing with her being in denial of all of this even, you know, over two years later, yes, she, she did not want to deal with it. And she, you know, at that point kind of turned to, to food or, or as a coping mechanism just to kind of feel normal again, I think or to mourn the loss of her normal, quote unquote, normal life prior to diagnosis.

Scott Benner 32:04
You know, it occurs to me, I don't even know that what happened at the education is what did this like, maybe this is just her wiring, this

Dana 32:11
would have happened anyway,

Scott Benner 32:12
I was gonna happen anyway. But it certainly didn't help anything.

Dana 32:15
It didn't help, it didn't help because it, you know, it affected my mindset as well. And you know, and I'm, I'm driving the bus for the most part, you know, I'm, I'm, I'm doing the majority of the grocery shopping and trying to counsel her on, you know, what we're going to eat and how we're going to have for dinner, and you know, what the options are for breakfast, you know, so I was trying to be somewhat low carb and you know, restrict some of these, you know, more typical foods that we had pre diagnosis as well. So, you know, I take, you know, a huge piece of that.

Scott Benner 32:48
I'm gonna take the opposite side of this argument for a second. Because I think that I think that can what can happen sometimes, is that because the, I don't know, the perspective I bring to this is that I'd like people to understand how to use insulin for whatever they're going to eat. Because I don't feel like I can tell the world how to eat, right, like, and bye bye. I could I could stand up and bang a drum if I wanted to. And I could yell and scream and no one would listen to the podcast, and that'd be the end of it. But but I'm not saying I couldn't say it. I'm saying that. I don't think that's how you get through to people. And if you're waking up every day and eating a bowl of Lucky Charms, if you want my personal opinion, take me out of this podcast for a second. I think you're making a health mistake. Yeah, sure. Regardless of your diabetes, no diabetes, I don't even care. Like you could be seven feet tall and look like an Adonis. If you're eating a bowl of cereal every morning, I think you're probably making a long term health mistake that your body is in such good shape and is compensating for in the moment. That's my personal opinion. Okay, now, to say that I won't eat a bowl of cereal this year. I mean, may or may not happen. But if some were to bring like some like crunch Berry, Captain Crunch in here or something like that, I got to think one day around two o'clock in the afternoon in between editing podcasts, I'd might throw a bowl. That can happen to me. Okay, if you put it here, are you asking me if I would buy it? I wouldn't buy it. If it ended up in the house. I would 1,000,000% Eat it. Okay, now, I as a matter of fact, I might be one of those people who like a week from now it's like that whole box at Crunch Berries out that happen. Like, you know, like, I'm not saying that. But if you're using insulin, that's more difficult than if you were to eat something else. And by the way, most low carb people would make the example like you know, in the morning have bacon and eggs because like, who wouldn't get sick every single day. And by the way, nothing over and over again is great. But I mean, for my money. I think bacon's terrific. If you gave it to me three days in a row, I'd be like, Oh, this is crazy. and making me upset. And so like, I couldn't do that either. My point has always been know how insulin works, adapt it to your lifestyle, then once this whole diagnosis periods over and even that you could be years into it, like now you've got managed blood sugar's stability, health on the diabetes side. And now you can address if you want, the way you eat, but trying to trying to on the same day, tell a person, let alone a 13 year old person trying to tell a person, hey, you have an incurable disease, you're gonna have to inject yourself with needles all the time. And bonus, you can't eat any of the food that you enjoy. Well, I don't know, what are we doing? Like? Who thinks that's going to go? Well? Or, you know, and for people who would yell, we'll eat keto, you go grab me 513 year olds off the street? No, don't give them diabetes. Don't tell them their life has just changed. Don't have them start thinking about like the oatmeal man from the commercials and had the diabeetus and oh my god, what am my friends gonna think and blah, blah, blah, I don't want to stick myself to take don't even give them all that. Grab a bunch of 13 year old kids and tell them they're only eating keto from now on, and see if you don't get kicked in the middle of the street by a bunch of 13 year old. Yeah, so I don't understand the thinking. Like, again, I know, I'm not supposed to be shooting heroin. But yet, here we are. And the whole world is shooting heroin. So like, like, like, what are we acting like just telling people the right thing is how is how you fix? It's effective? Yeah, Jesus Christ. Everyone knows that's not right. Right. Like

Dana 36:47
every, but thankfully,

Unknown Speaker 36:50
I will say good, where we

Dana 36:52
did find the podcast early on, like, you know, when I was doing scrolling, the one night in the hospital, I found it somewhere in some thread. So I would say it was I was pretty quick to get, you know, educated on the whole philosophy here of just insulin at the right time, the right amount for the right food, like you know, so it wasn't long in our house until we realized you can have the chicken tenders and french fries. You can have the Chinese food like we can have these normal things on occasion, as we normally would on occasion. And we can Bolus we can do this. You know, we have strategies. We have extended Bolus we have Temp Basal. And so you know, we didn't live in this like hell of like we can only have eggs and you know, rubberband, spaghetti, we that we that that phase was short, thankfully. And we ended up you know, using Jenny did a six month retainer with Jenny, who was absolutely phenomenal. And we learned so much. And you know, really, I was all in on, you know, let's, let's Bolus for fat protein. We do Basal testing, like, you know, I zoned right in on let's let's use these strategies to the best of our ability and allow Sadie to kind of eat what she needs to eat as a teenager wants to eat and it makes us work. But I would say it didn't, it didn't fix what had already started, you know.

Scott Benner 38:27
So, so let's let's kind of get to it. Now she has been diagnosed with depression. Now she has

Dana 38:36
Yeah, so that came a little bit later. So the eat when we found the wrappers, we did go, we did decide to do an eating disorder intake. So during that intake, we learned that Sadie had had some feelings of self harm and suicidal ideation. So that that was news to us, you know, sitting at that intake. So then she was given, essentially, you know, taken her to pediatrician and given a diagnosis of depression as well. So, you know, now and she's got Hashimotos that was given at the hospital. So, you know, now we're looking at type one, how she, you know, binge eating disorder, depression, feelings of self harm, and suicide.

Scott Benner 39:22
Hey, when did they diagnose the Hashimotos in

Dana 39:26
the hospital? That was that was part of what came back and the whole, you know, routine blood work that they did in the hospital, and I have hypothyroidism and so there's my mom. Now, no one's ever checked our antibodies. I would just assume it's probably Hashimotos.

Scott Benner 39:40
But did they start medicating that right away?

Dana 39:43
You know, the doctor offered to and I hadn't looked at the bloodwork enough to think about that for like a week or two. And then I circled back with them and said, Yes, I would like to start

Scott Benner 39:57
that. Okay, I don't want that pretty much yeah. Because depression can be like untreated, thyroid issues could lead to it. Yeah, that's why it was right. Okay. Yeah.

Dana 40:06
No, she started treatment pretty early on with Leivo. Okay,

Scott Benner 40:10
where did they keep her? TSH?

Dana 40:12
They do a pretty good job. Actually. It's always under three. Usually under two. I keep mine under two. Yeah, mine was recently up to nine. I didn't know it in the blood work showed it and he bumped me up and then we rechecked and it was under two. Interesting

Scott Benner 40:24
under two is where I vote. But I interesting about yours jumping up. Arden got home from college. And she didn't seem like herself. Yeah, this last time. And you know, we she was she had been gone for six months. So she was going to that the doctor anyway, when she got home, and her TSH jumped up to over five. Wow. Yeah. So and the doctor was like, Look, I don't think this is a thing where we're going to, like, need to raise up your medication forever. So she did this thing. Like, I don't want to, like tell people like this is not something you should do on your own. But you know, she did some calculations and hit her hard for 10 days with a large a larger dose of something and then put her back to her other thing. I'm okay, you know, and he's a kind of a wizard. So, yeah, we the thyroid stuff. So actually, she has to go back and get another blood draw before she goes back to school to see where we're at. Yeah,

Dana 41:23
see where it is? Yeah.

Scott Benner 41:25
Anyway, what was your symptoms when your TSH I'm

Dana 41:30
done? Never had any I've never had any and neither to my mom. We never gained weight. We never felt tired. We're like wired. 24/7. So, like, if anything, I have trouble relaxing and going to sleep. So you would almost think I have hyper, you know? Well,

Scott Benner 41:45
you're very cocky. So no. And you're from New England. So

Dana 41:51
just adapted very well. I grew up in Virginia, and I went to college in Georgia. I just moved up here for work.

Scott Benner 41:56
Gotcha. I have to tell you that so far. The most surprising thing in this conversation is that the internet exists in New England that I didn't know for sure. Oh, yeah, we got it. Yeah, we sure do. Get the wires to do all the trees.

Dana 42:08
Very consistent. Now. It doesn't always work. Yeah, yeah, I

Scott Benner 42:12
got you. You don't have to. I said you're very Caucasian. When you were like, I'm I'm wired. And I'm like, my DNA back. It's the most boring DNA in the world. I'm just looking at your photo. And like if I went to Google right now and typed in white lady, it's possible you would?

Dana 42:29
Yes. And I was told that I had Native American blood and when I was being raised and why those

Scott Benner 42:35
people idea? Yes. So how do you address when the mental health stuff comes up in the eating disorder intake? How does that all get addressed? So we went

Dana 42:49
on the waitlist for the eating disorder center, because it was like a six month plus waitlist. So we just went to the pediatrician and the pediatrician, thankfully, who's a nurse practitioner, but she's phenomenal, agreed to start her on Zoloft. Because at that point, we were still kind of in COVID. Land, it was nearly impossible to get in with a pediatric psychiatrist. So she started on a low dose 25 milligrams and got us on the waitlist with like an adolescent medicine specialist that was going to be a doctor that could kind of help us with the, the eating disorder, the depression, and maybe kind of the self harm piece. So eventually, when we got on with her, she bumped the dose up. And then it was around that, you know, maybe we were with her for a little while, eventually got in with a psychiatrist.

Scott Benner 43:39
Did she actually hurt herself? Or was she just having thoughts about it?

Dana 43:43
She eventually did. Yeah. So you know, it became very routine that she was very depressed. Not showering, not doing your hair, not putting makeup on not doing your homework, spending time in bed, not wanting to be with friends, which is very different from me. And she prior to diagnosis was the kid and we are the house that has friends over right? The door's always open. The pantry is always full. There's a pool, there's a volleyball net, there's a trampoline. It's the funhouse. Right? So that started to go away, you know, and it felt weird. And Sadie would just spend a lot of time you know, at home alone kind of living in that, that depression and then I being the kind of type a control freak that I am. I have trouble understanding that even though even though I do from an intellectual standpoint, understand that, you know, I still would say things like, Come on, let's get up. Let's go for a walk. Let's, you know, you know, we got to we got to do something, we got to feel better. We got to, we gotta move our bodies, you know, and that was being met with significant resistance. And my husband and I were constantly fighting about it because you know, you She would come home from school and he would be working from home and she would take all these snacks up to a room. And he would be oblivious to it because he was in the office, you know, basically with a headset on working all day. And I was out working all day. And I would just see these blood sugar numbers, you know, 303 50, and I'd be texting, I'm like, more insulin, please. You know what's going on over there, you know, driving them all crazy. And I think, you know, at one point, I guess we kind of reached, we did reach somewhat of a boiling point. And we were like, I think I would be better off if I didn't live here, because you guys are driving me crazy. And I'm driving you crazy. Then I ended up in a hotel for a couple of nights, just to kind of let everybody decompress, maybe and think about what what are we doing here? And what's our goal? And what do we need to do for safety? But you know, I would be, you know, trying to do the Warsaw method, you know, won the fat and protein and my husband is still like, how do I do it Temp Basal. And, you know, I would just get very, very frustrated, you know, you know, I would spend a lot of time talking about the podcast, they were like, Would you shut the EFF up about the podcast? You know, like,

Scott Benner 46:07
I hear that sometimes. So you're in one direction, 1000 miles an hour, and they're in the other direction? Not not moving at all. Right? Exactly. She's not Bolus thing for her food. Your husband doesn't grasp the necessity behind it. How is that possible, by the way,

Dana 46:22
or the complexity? Okay. Yeah, I mean, I understood the necessity of like, okay, if you're going to have a plate of spaghetti, you need the Bolus for it. But just the complexity of what this food means and what this glycemic glycemic index will do. And you know what this cheese is going to do four hours later, and you know, that that just wasn't that just wasn't there for him, you know, and he, he struggled to grasp it, Sadie didn't care, right? You know, she wasn't gonna take the lead with that. And I was all in. So it just created a ton of conflict

Scott Benner 46:57
with your husband, like, before you went to the Marriott. Like, you sit down, you explain, like, hey, her blood sugars are high. This is gonna really hurt her. We're shortening her life significantly, like you say those things. And he goes, what?

Dana 47:14
Um, it basically sounded something like, I know that. And I'm working, I'm in my office, I'm working. I'm on the phone. What do you want me to do? You know, and kind of like you want to you want to deal with it. You work from home, you deal with it? You know? And I'm like, well, the job I had at the time, I was like, I can't work. It's not an option. I'm on the road. I'm in sales. Yeah.

Scott Benner 47:34
But let me let me let me keep going with this. So do you think he really understands what we're talking about? Like, do you think he really understands that she's going to like, not like, she's gonna start losing her vision in her 30s That her like, like her kidneys are gonna stop working, that she's going to have gastroparesis, like, I'm naming a bunch of things that I've had people on here, tell me have happened to them, when they grow up through their teens don't pay attention to their blood sugars and get up in their mid 20s or early 30s. Like, do you think that? Or do you think that he just didn't really think that was going to happen? Because I'm trying to imagine you're still together, right? Yeah, yeah. So I imagine you're married to somebody who hopes and expects your daughter to live a long time to be healthy. So when when people are met with the idea, like I understand the kid, like she's 13, even if it happened to you, and you were blocking it out as an adult, I don't understand that. But the people around you who are adults, who are have been informed. I just don't understand. Like, to me, it's like holding a lighter under your arm, like I get if you're doing it. I don't understand if your dad doesn't swap the lighter out of your hand. That's right,

Dana 48:45
right. Yeah. And I think, you know, it's still a little bit of that, well, it's not gonna happen to her or it's not that bad. Or, you know, she's a teenager and teenagers are going to go through, you know, difficult periods. And this is still new, you know, just a lot of kind of excuses. Meanwhile, really, her agency had gotten quite good. Okay. Because I was the insulin. I mean, I drove everyone crazy, but I got her down to a 6.1 you know, pretty quickly.

Scott Benner 49:18
Yeah, you're running around like crazy yelling Bolus every five seconds crazy.

Dana 49:22
Yeah. Crazy. Night crazy all day. Crazy out of the house. Crazy. Yes. Yeah.

Scott Benner 49:27
So you're holding, you're propping up the whole thing?

Dana 49:30
Yes. And it was terrible. Sure. For everyone.

Scott Benner 49:35
No, I for different reasons.

Dana 49:36
Yeah. And then I will say like, you know, my, you know, I would just be full of a lot of rage and anger because I felt like I was kind of trying to do all this on my own.

Scott Benner 49:48
No one's listening. No one seems to care as much as you do. The pressure of her staying alive and healthy, false solely on you because nobody else is paying attention to it. Like that kind of stuff. That's how it felt you Oh,

Dana 50:01
gotcha. And then she started cutting.

Scott Benner 50:03
Perfect. Yeah, you were probably like, I don't know why I didn't know what I was doing before. Now I really don't know. Yeah. Now we got more problems. I mean, the six month waiting list, by the way for the eating disorder centers. I mean, confusing. I understand how it happens. But I mean, again, it's like calling the fire department being like, my house is on fire. Like we have a slot for you. And I know you're gonna, on Tuesday, do you? Would you prefer if we came in April or May? Because I can do the third week of April, the second week of May you let us know?

Dana 50:36
Yeah, it was that bad. And it was still virtual only and she was just like, forget it. I will zone out. 100%. Don't even put me in there. You know. So we actually never did it. We found other resources. Okay, but we did not go into that program. Where

Scott Benner 50:54
are we right now, Dana? Like how do things stand today? Right now we

Dana 50:59
are in a DBT Dialectical Behavioral Therapy program. With a psychological group that's about an hour away from us, we started there at the advice of her psychiatrist. Because the multiple things right the eating disorder, the self harm, the binge eating, and then what we didn't touch on, but just briefly, a loss of friendships, she really lost her friends. And she started going down with the wrong crowd. So much so that we changed her school, so that the psychiatrist looks at us at our second visit, and said, I think you need DBT therapy. And DBT is there to kind of help with emotion regulation. And really, apparently, it's shown to be effective for many of these things, self harm, eating disorders, not type one diabetes, but you know, all the emotional stuff that she was also dealing with. So we are deep into that program they have, we have a group every Tuesday night for an hour and a half. She's in a group of teens, we're in a group of parents, and then she has a one on one with her therapist on Thursdays. And I think that we don't get a lot of feedback from the therapists because there's a lot of they do keep things very confidential between Sadie and her, her therapist, but we can tell that there's the disordered eating is a lot better. We're not fighting, you know, I'm not fighting highs all night that I can't explain. I'm not finding rappers in a room. For the most part. Now I do occasionally. But for the most part, that's a lot better. We're not seeing cutting if it's happening. I'm I'm just not aware of it. But when I have, you know, I'm told that that's better. So that program is going to be coming to a close in about five weeks.

Scott Benner 52:50
Because she's graduating or because they're moving out of town.

Dana 52:53
It's it's it'll be the end of the program. It'll be graduation for all the teams. However, they did spring on us yesterday that she's not really ready to graduate. And they want us to keep her in what they call the grad group. So kids that have completed the program, but still need need to be in the program, essentially.

Scott Benner 53:11
Can I ask, is there any indication of these ideas? If she doesn't get diagnosed with diabetes? Did you see her I know, it's tough because she was just 13. But were we moving in this direction?

Dana 53:22
I don't think so. No, I really don't. I mean, she had such a fun adolescence, so many friends so active, you know, sports, and they would get on their bikes and ride down to the river. And they would have, you know, swim parties here late at night and sleepovers. And she would get invited to do things. I mean, all that neck came to a grinding halt. She hasn't she didn't get was I didn't do anything. Do

Scott Benner 53:49
you think she's changed in a way that other people are like, I don't want her around? Or do you think? Okay,

Dana 53:55
sadly, sadly, I do. Yeah. Yeah. Because I think she's, she's, she's pissed. And I think she has lashed out at friends. And she's also very much still in denial of her diagnosis. So, you know, we still struggle a lot with her novels before she eats. You know, we're about to send her back to school and sports. And she's 15 she's going to be a sophomore. We're not sure we can have the doctor write up the orders to make her independent at school. Because last year, we tried that. As a freshman, we thought okay, freshman she she can be independent. She can Bolus before her lunch. That's what she wanted. But the endo thought was appropriate. And within a few months, it was it had gone sideways like I you know, we see our numbers get up over 300 You know, practically daily. So we changed the order, so she had to go to the school nurse but then she still wouldn't go or they snack and not have insulin. We'd have to call the school nurse three, four times a day every day. Please Just call her down. She needs insulin, please call her down, you know? And so we're, we still haven't we're not we're really not much of a better place for that.

Scott Benner 55:07
Yeah. Do you have other kids? Yes, the neglected

Dana 55:10
one, Charlotte, she's turning 13

Scott Benner 55:16
I was gonna ask what it's been like for her as well,

Dana 55:18
often, because he's a worrier. So she worries about safety. And she feels left out a lot. We've spent so much time and energy and focus on safety, all these appointments and these therapy programs and just that's been so consuming, that, you know, he or she has, like, could somebody just play Uno with me, you know, with somebody just like, um, read a book with me, you know, it, like my heartbreaks for her because she was, so she was, you know, 11 when this happened, and her life got turned upside down to

Scott Benner 56:01
Yeah, so yeah, that's terrible. I'm sorry, awesome. Stress for her. How are you? Okay, thanks. That's not sound very

Dana 56:14
just kind of charge on. Yeah. Wow.

Scott Benner 56:16
It's a lot. I'd go back to the hotel if I was you.

Dana 56:21
I'm doing Monday night, but they're coming with me do it.

Scott Benner 56:25
Do you see a path out of this yet? Or is it not obvious yet?

Dana 56:30
My hope is the path out of this is through this DBT work that we're doing. They it is a phenomenal group of psychologists. Additionally, Sadie's going through a battery of testing right now for ADHD, OCD, learning disorders. And I suspect that they will pick up on something, it's possible that if she has ADHD that is contributing to forgetting to Bolus there, you know, there could be something else going on. It's not just Sadie being negligent, you know. But, you know, we had a terrible school year last year in terms of the homework not getting done. And I forgot that I forgot this. No, I forgot that. She plays sports, but she wouldn't pay attention to her blood sugar. So, you know, she'd be on the court at 300. Or she'd be on the court at 50. You know, she, she doesn't, did not and, um, I fear this year, she still will not want to deal with it enough to manage it through another sports season. Okay.

Scott Benner 57:36
So we got a couple of things going on. You're worried she's gonna start playing sports, too? Well, she,

Dana 57:41
she loves volleyball. So I don't think that she would make an active decision to not want to play. But I think if she doesn't get a handle on how to manage this through the season, the coach can't rely on her inner team can't rely on her. She's of no help to them if her blood sugar is 300 or 50.

Scott Benner 58:02
I have a question. So how does she manage? What is she using?

Dana 58:06
Oh, she's on the Omnipod five. And we recently switched to the G seven. We actually have a couple of G sixes left. But we recently switched to the G seven just to try a smaller device for her because she is so self conscious. And she wants to hide it all and you know, the closed loop? I guess, you know, everything would every alarm would go off when she would get an urgent low and any little beep and barristers are in a little clique associated with the micro Bolus was embarrassing when she was in class. So anyway, moving over to the g7. She actually surprisingly wants to go back to the GS six, but that's how we manage

Scott Benner 58:41
Hold on a second. You're not using Omnipod five, but G seven. They don't work together yet. So well.

Dana 58:46
We they're both attached to her body. But it's obviously it's it's not a loop. We're in manual mode.

Scott Benner 58:51
So you're wearing it on the five five running it in manual while she's doing g7. But she does she missed the automation. Do you think?

Dana 58:59
I think a little bit a little bit. Yeah, I think we'll probably let this g7 script run out and go back to the G six. Because yeah, it was certainly a little bit handier for like going into activity mode. And it could certainly tackle the rise from you know, ice cream or a cheese stick or something, you know, so it did help in certain aspects that I was up three times last night given her corrections that I wouldn't have had to do if she was on the G six.

Scott Benner 59:27
What's her agency

Dana 59:29
right now? 6.2 So it's been as low as five eight, but

Scott Benner 59:32
you're but you're constantly involved.

Dana 59:35
I'm crazy. Yes. 100% Yes. And

Scott Benner 59:38
what's your standard deviation? Is that bouncing Is it high? Oh,

Dana 59:43
I wish I had repeating me in front of me. Yeah, it's it bounces a lot. It's probably 3540 Like if we if we let her contract like sleepover with friends for birthday 350 overnight, they just had a bunch of candy and didn't do anything. You know, she was a forage camp and they had a bunch of candy are constantly over 300. So if if I wasn't the crazy person on the sidelines trying to correct everything, day one C would be so horrendous.

Scott Benner 1:00:11
Listen, I'm gonna I'm gonna ask you a question. Did you listen to the episode about the eyelet? Yeah, okay. Oh,

Dana 1:00:17
yeah, I was totally on top of that. I saw the news. But you know, before you got him on, we would never go to a two pump.

Scott Benner 1:00:26
Okay, so the tubing would be the issue for her. But would ya to take a break for a second? If you told her look, all you have to do is say, large meal, medium meal, small meal. would she do that? Or you think she probably wouldn't do that either.

Dana 1:00:40
We talked about it yesterday morning, I think there's a good chance she wouldn't do that either. Because it's still just changing gears, you know, and admitting that you have to deal with something that you don't want to deal with.

Scott Benner 1:00:52
I think there's just a large interesting piece

Dana 1:00:54
of denial though, going on there. It's just it her preference would be to avoid this and pretend it's not there.

Scott Benner 1:01:02
Okay. No, I completely understand. Okay. So Dana, I think we've done a good job of going through all of this. I'm going to try to end on an upbeat note. Okay, what did you tell me right before we started recording?

Dana 1:01:16
Oh, that I'm the main person that's responsible for getting rid of talking about religion on the Facebook page.

Scott Benner 1:01:22
So the Facebook page now has had a rule for like, I don't know how long now that just says it says no religion or politics. Right. That's it right. And well, yeah. And I, by the way, I don't really stop people from talking about stuff. It's just that if it gets out of hand, I can point to that. I can point to that rule as to why I have to shut the thread off. If it happens. It doesn't happen very often. But I don't remember what you're talking about. So can you please, like, relive it with me?

Dana 1:01:50
Yeah. Well, there's, I remember there being a political post one time and I comments. And I was like, Hey, I thought we were going to talk about politics. And, and then it occurred to me then I was like, that's funny. We have no politics rule, but we don't have no religion rule. But I didn't really think much of it. And then one day, there was one of these posts. And it was lovely, but it was all like, Thank God, or thank Jesus, you know, my son is alive or my daughter's, you know, if it weren't for God, or Jesus, I wouldn't, you know, unlike unlike, and then I just wanted to, I think we have should have a no religion rule, in addition to the no politics rule. And then you actually commented and respectfully, they and I disagree, because faith is a large part of people's lives. And I shut up I didn't, I didn't, I didn't say another word on the whole thread. But my philosophy was, or maybe I did comment on one person on the front, because my philosophy was mechanically, your faith has nothing to do with blood sugar. Mechanically speaking. It's it doesn't it does not play a role. Your faith may be important to you, but this is about managing blood sugar and working with insulin. And I don't know sometimes I just religion just is a turn off for me. Personally, just,

I'm not a non religious person. Don't get me wrong. She got my daughter to go to a Catholic school. We are not anti religion.

Scott Benner 1:03:15
I want to just tell you, Dana, I know you're a Catholic, even though I never asked you but go ahead.

Dana 1:03:20
Catholic, Protestant, my husband was raised Catholic.

Scott Benner 1:03:23
Somebody is it? I could tell for sure. But yeah, but so Okay, so here's my thought on it. Yeah, I, I don't just not have a problem with it. I'm completely unencumbered by the thing that you're upset by. So if somebody if somebody wants to say, I pray that this happens, or I want to thank Jesus for like, I not only do I not have a problem with it, it doesn't. I don't rub up against it at all, like so it doesn't make me upset. I wonder what but it did you and it does for other people as well. Yeah. And I think I think that if I'm paying attention correctly, it is really the difference between the brain that says that there's a higher power and the brain that says that there's not a higher power, and for the people who say that that's not in existence. Then when you say things like I need help with my health, or I hope this blood sugar I praying with this blood sugar comes down your brain goes don't pray Bolus. And by the way, my brain says that to my brain says don't pray Bolus, but I also am not upset that they're praying for it. I would just say, Hey,

Dana 1:04:32
I am not either. And listen, somebody asked me to pray for their dog the other day and I told them, I would pray for their dog. I'm not anti prayer.

Scott Benner 1:04:39
Do you know let me go with you on that for a second. I would not do that. If you asked me to pray for you. Well, I do love dogs. No, no, it's not the dog park. at the dog park, if you said to me, can you please pray for whatever I would say I will absolutely keep a good thought for you. And I

Dana 1:04:58
generally say I I will send my goodbyes I really do generally. And

Scott Benner 1:05:02
I would honestly throughout the day think about you. Oh, yeah, but I would say my goodbyes, right. But that that request wouldn't send me into a private room bedside, where I would decide that I'm going to pray for the dog. Wherever we

Dana 1:05:18
disclose. I did not pray for the dog. The dog, my good dude, I sent the dog my good

Scott Benner 1:05:25
lady that you would pray for her dog. Is that right? I did. Yeah. I hope she hears this. I hope one day she goes, Oh, my God, I was I really I thought that's why that dog lived.

Dana 1:05:37
Here. No, I just, you know, I find a lot of religion to just be a little bit. What's the word? It's like? I don't know, the the overall the the I don't know that. Some people are just so focused on religion that I feel like some things aren't very genuine and kind of underneath. Why does

Scott Benner 1:05:58
that? Why does that matter to you? Because because there are people like, I'm not saying that. There's not genuine or kind. I'm saying that if that's your assessment, there are other people who you would assess that way who aren't religious? Why does it matter? When it comes from religion? Something happened to you when you were young, they turned you off?

Dana 1:06:16
Well, I would say that nothing specific happened to me, I was young. I mean, I was raised in a church that didn't have a bad experience or anything. I just find that some of the people that proclaim to be followers of Jesus followers of Christ, are some of the more judgmental closed minded people that I have ever encountered.

Scott Benner 1:06:35
Well, I don't know about that. But they do have a lot of rules they're trying to follow. So

Dana 1:06:39
just something rubs me the wrong way. And there are people within my own family that, you know, proclaim to be, you know, followers of Jesus and born again. And you know, they go to church every Sunday, they wouldn't stop and buy a sandwich for a homeless person, they would say, why does that homeless person have a cell phone? You know, there's judgment. So

Scott Benner 1:07:00
Dana, we're getting to it. So in your personal life, you know, people who proclaim religion, but are not very religious minded.

Dana 1:07:07
They're not very good people. When it comes down to

Scott Benner 1:07:10
it. Oh, yeah. So that's been your experience. Yeah, that's in that is my bias, right to call it colors that you think about. But now, extrapolate that all out. And put me put yourself in the position of me, who is running a Facebook group with 40,000 people in it? I don't care about I have some regret after I made it. I don't care about what you saw your uncle do. Okay. Or, or your biases, I don't care about them, just like I don't care about the other ones. You have to understand that, from my perspective, it doesn't matter. If Jesus is a walking talking person living in a cloud, or if it's a Buddha Meister that somebody made up 4000 years ago, I honestly don't care. I'm running a place where both people, right. And their beliefs exist at the same time. And so it doesn't matter to me, if you say, like, we just had a situation the other day situation made it sound like a lot more than it was. But somebody said, I'm praying for this. And a person came in and was like, there's no religion in this group. Like didn't just say it, they dropped a photo of the of the rose, like, oh, that person's looking for a fight. So I step in, and I remove his comment. And I sent him a private note. And I'm like, Look, I don't know what you're doing here. But stop. Like, that's literally what I said. So then I had a private back and forth with that person, where they said, I'm just going through a lot right now. I have a couple of family members with health issues. I'm stretched too thin. And in all honesty, I got online to get posts to make myself feel better. And I feel bad about that. I'm sorry. Right. So that's mostly my consideration when I'm moderating is that even the day that you did it? Something was and listen, you just spent an hour explaining in a way that I think everyone listening could understand if you were having a bad day, and you wanted to go pick something that you were sure you were right about to feel good about for a second. That's my anticipation when I see that I don't think anyone is a bad person. Like I don't think people set out to harm people. I think I think that people get in bad situations, they have bad days, they have bad days to turn into bad weeks, they need a release, and they pick something where they can kind of just get it out a little bit. And I think that happens online a lot. And so it's my it's my job to step up and go, ah, doesn't matter to me. Like yeah, you can't say that to her. And, and so I'm not going to let you I don't and people are like, well, you agree with her? Not me. I'm like if you're confused. I don't give a flying fuck about either your opinions. I'm not friends. You're misunderstanding my job. I'm moderating the space. I'm not making it. argument about whether you're right or they're right, I couldn't possibly care less. Although I do care when people use that phrase wrong when they say I couldn't care less. Or I could care less if you say I could care less than you actually could do less. So the phrase is I couldn't care less, which means I care so little. There's nothing below that. Anyway, nothing left. Here's my sound. That's my, my language.

Dana 1:10:31
About like, praying. There's just that that one and egg issue, right. It was like at the right moment, the right time. It was a very knee jerk react response on my part, but I don't go down that I do not go down the thread and have comments and get roped into any drama whatsoever. But I see that stuff all the time. And I don't I don't say anything. Because, you know, reality is people having faith and religion in their life doesn't offend me. Yeah, you know, that particular one was just like, I was just kind of like, I had to like, Are you kidding me? response.

Scott Benner 1:11:05
So I don't remember the context of it. But I'm going to read you something that is going to just, I assume crack you up. And I hope give everybody a lot of respect for people who do this thing of helping people online and moderating spaces. Let me see if I can follow me. And if I don't find this, I'm going to be embarrassed Hold on a second. I got yelled at pretty good online the other day privately. It's more fun when they yell at me privately. I'm super excited about that when that happened. And DM Oh, yeah, yeah. So hold on. A roll. No, do you? Oh, here it is. Okay. So a person doesn't matter what the context was online, was being an asshole. Now I can see, they don't think they're being alright. And that's fine. But they are they're picking through a thread and jabbing at people and trying to cause problems. And I let them be themselves. But when they were unkind, I took out their phrase. So their their comment, honestly, there's a ton of rules on the Facebook group, because people's behavior precipitates them being necessary. But if it was up to me, the only rule on the group would say be kind, because I think I think I think it covers everything. Yeah. So I get a note from this person that says, I want to tell you that I was being nice. And I was being exactly how I would like to be treated. If I said something that was getting ignorant. Oh,

Dana 1:12:45
I just lost your nice,

Scott Benner 1:12:47
because then I meant to be called out. Just because culture is this way for this person doesn't mean that the rest of us have to believe it. Or that it's right. But also don't generalize and but and it goes online. And then at the end, this is really my favorite thing. Except Hold on. There's a thing going by my house is gonna be the end of the world. What in the hell?

Dana 1:13:11
No flying your plane.

Scott Benner 1:13:12
This is the last recording of Scott Benner. I want to say goodbye to everybody. I love cheese house. Thank you all for coming. Okay, so but at the end, I won't be recommending anyone else to this group. I'll let them know that they don't have freedom of speech. So anyway, I could pick through this if you want me to people don't understand what freedom is. There's a lot going on here. Right? So I respond back. And I say first of all the same thing. I always say when somebody DMS me now let's be clear, other people would block you. And that would be the end of it. Not me. I feel like I can get you back. I don't have these conversations in private, because in the past, people will screenshot what I've said and change it and then reshare it. I understand you don't agree. I am moderating a large group. It is a job you don't want trust me. I removed a few of your posts and simply asked you to be nice. Two hours later, I came back and you're telling someone that anyway, then she did it again. I don't want to be too specific. Yeah, I said, so. Two things. I have a life and can't do this all day long. And what you just did is under no interpretation. Nice. So I asked you to be nice. And then you came back and you did it again. Your account was suspended for three days. I hope you come back when this is over. Have a good evening. I want to be done. But I can't be done. Because I get a response. Well, well, you stopped me from posting. So I can't post it there, which is why I'm sending this to you. And I said well, yes I did that because you continue to be unkind. I was trying to be kind by explaining to you that I don't normally talk privately, but then I went on to explain anyway. All right. I hope you have a good night. I also have a king right to say something that Ticknor. But it's okay that your admins continue to comment on my stuff, and will not. So by the way, there are other people trying to stop her from being a lunatic, like, kindly and she sees us as being attacked. Now, I say those people are not admins. They're just lovely people who lose links for people to try to help them find the podcast. I said, By the way, they're also people and they have their own opinions. I also deleted them, because when I deleted her thing, it all deleted out right away. I said, But now here we are in line and you're cursing at me. What should I do about that? Should I keep talking to a faceless person who is yelling at me about comments on a message? Right? Please just say goodnight. I think if time passes, this will all go away. And we'll be okay. Thank you. Now, here's where I feel amazing. Scott, I apologized for my actions to you. I apologize for cursing at you. And I'm like, I read those two sentences like I am making the world a better place. But I will. But I will not apologize for stating my opinion. Just say you're sorry, and good night, right? I will not tolerate being attacked because of my opinion. I apologize to you for your pod. Now, here's the part that starts freaking me out. Because your podcast has been a godsend. And I'm like, so for everybody listening. If you want to know what's really going through my head, while this is happening, I'm thinking one thing. Just say thank you. Leave me the fuck alone. Like, that's all I'm thinking. But

Dana 1:16:46
the content, be grateful and leave your drama at home.

Scott Benner 1:16:50
For me personally, but as a person who does this, honestly, this is terrific. It's a great back, she says the please have a wonderful and safe weekend. Thank you for your group and your podcasts. I really am sorry, again, this is not my character. And I said there's no need to apologize. But thank you. I also hope you have a terrific weekend. And that's going to it for that person hears this, please don't be embarrassed, like you're the only one who knows it's you. But don't be embarrassed. This is a great example of what we were talking about earlier, which is just you get into a bad spot, you don't realize you're in a bad spot. You start like lashing out at everybody looking for someone who's wronger than you are I know that's not English, right? So that you can feel better for a couple of minutes. And then you ran run into me, a person who doesn't want you to go, I know the podcast is valuable for you. And the space is valuable for you that you're going to get past this moment. And that we're going to all be okay again, because I've seen it happen over and over again. I don't want anybody to lose out on the podcast. So I try to work through these situations. But it's just, I could see how this was going the entire time. Like I've been through this so many times, I actually know where this is going to end. And they don't and that's fine. I was wondering. Anyway, I just thought that was interesting to bring up I hope that you find yourself in a similar situation with your problems at home. Because I think that if you stay on this path, I think you can get your daughter through all this. You know it you just have to be able to like, believe me that I've heard your story before and that people who who manage it and stay on top of it. You come out on the other side who usually sometimes end up coming out the other side. Okay, so yeah. Anyway, it's hard to see in the moment. It's one of those contextual things like you have to interview a bunch of 60 year old people who tell you horror stories from when they were teens to feel a little bit better. Yeah, yeah, to realize that there's no that it might be okay. Yeah, it could end up being okay. I'm not dismissing it to it. Also. You know, I'm not, I don't think I'd be blown sunshine up. Like this could go really bad too. But of course, yeah.

Dana 1:18:57
But I feel like, you know, there's, you know, some comfort in knowing that we're trying all the all the things that we're trying are the right things. Yeah.

Scott Benner 1:19:08
And it sounds like your husband is going to the therapy for the parents as well. Yes. Yeah. Oh, yeah. Yeah, yes. So he's getting it too. Yeah, it's tough with the voice because even as we get older, we're just like, 12 in our heads. So you're trying to get us to do stuff. And we're just like, I hope we can have sex and, and football starting again. Yeah. Like three thoughts.

Speaker 1 1:19:33
Anyway, is there anything that we didn't talk about that we should have? No, we did it actually covered it. Yeah, there's a lot of I let me just apologize to Rob who does the editing now about all the cursing?

Dana 1:19:44
Oh, yeah, I'm gonna put emails too but you were you were

Scott Benner 1:19:49
up upset going through this document for the new lead, because again, it's if you are in my position and And my position is a unique one, I guess for having had so many conversations with so many different age people who have been diagnosed and gone through so many different things, different ages, blah, blah, blah. Like it all, it's so obvious, so frustrating and frustrating. It's so frustrating that you left a children's hospital went to this thing that they have completely set up. And in minute one we're on are on the wrong direction. Like it's just that's so upsetting, you know? Well,

Dana 1:20:27
I hope the document that you create gets utilized. You know,

Scott Benner 1:20:31
it's gonna be a series that Jenny I make. Oh, awesome. Okay, good. That's right. geared towards providers. I saw your post. Yeah, I'm gonna call it grand rounds or something. I don't know exactly what it's called. Yeah, perfect. Yeah. But Jenny and I are gonna go through from people's, we're going to lay out our thoughts. We're going to use the feedback that we got from the Facebook group, which I guess after you just heard that story, you're probably like great lunatics, but they're not. They're all really lovely people who have great perspectives of their own. And I do think

Dana 1:21:03
I'll recommend, I'm going to recommend it to my Well,

Scott Benner 1:21:06
let me get it out first, and you listen to it. Yeah. Just think. And then, if you like it and tell people about that'd be terrific. All right. Dana, thank you so much. I really appreciate it. Thank you. Thanks. All righty. Hey, before I say goodbye. Are you really certain about having Sadie's name in this? You're okay with that?

Dana 1:21:22
Yeah, that's okay. There's not much to uncover or find there. Okay, fine. All right. Yeah, for me.

Scott Benner 1:21:36
Huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G voc glucagon.com. Forward slash juicebox. You spell that g v o OKEGLUC. Ag o n.com. Forward slash juicebox. A huge thanks to us Matt for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box this is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. 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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#1141 DJ Eight Years

DJ was misdiagnosed with type 2 for eight years.

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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 1141 of the Juicebox Podcast.

DJ is 52 years old he was originally diagnosed as a type two, and actually remained misdiagnosed for eight years. He's drastically changed his diet, his exercise, and this is his story. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cosy earth.com. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. If you are a loved one has type one diabetes, please go to T one D exchange.org. Forward slash juicebox and complete the survey. That's all I need you to do. You will be helping immensely. US residents only takes fewer than 15 minutes to complete T one D exchange.org/juicebox. This episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. And find them on Facebook and Instagram touched by type one is an organization dedicated to helping people living with type one diabetes. And they have so many different programs that are doing just that check them out at touched by type one.org. Today's episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G seven and G six continuous glucose monitoring systems. dexcom.com/juicebox This show is sponsored today by the glucagon that my daughter carries G voc hypo pen, find out more at G voc glucagon.com. Forward slash juicebox.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

D.J. 11:28
one month?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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#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. 

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

+ Click for EPISODE TRANSCRIPT

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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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