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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