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Scott Benner 0:00
Hello friends, and welcome to episode 604 of the Juicebox Podcast.

This one's fun. Linda is the mom of a child with type one diabetes. And she lives like almost exactly where I grew up. And we figured that out very quickly the beginning of the episode. It follows suit. I'd love to tell you what else we talked about. But I edited this program many weeks ago and I no longer remember. That's as honest as I can be. While you're listening, please remember 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. If you're new to the podcast, you should check out the Facebook page Juicebox Podcast type one diabetes, it is private and has over 18,000 people in it just like you are all talking about taking care of type one. If you're looking for the diabetes pro tip episodes or the defining diabetes series, they can be found at Juicebox Podcast comm quorate. Di just forgot what the link Oh, I got it. Boy or a diabetes pro tip.com. It's been a long year, I made a lot of podcasts. This episode of The Juicebox Podcast isn't sponsored by anybody. I made more podcasts than I had ads for. That's okay, though. I do want to take a moment to thank the advertisers. And seriously for you to understand that the podcast just doesn't exist without the advertisers. I know, I'm not kidding. This is the end of December, it's between Christmas and New Year most people have offered at the very least they're not doing stuff like I'm doing right now. I keep putting out the podcast for you because that's what I do. And that's what I do. Because I can afford to do that because I have advertisers. And because you guys support them, you know, you support the show. You listen, you share it. That's why advertisers are interested. That's why I'm sitting here today. And every advertiser we had from 2021 is coming back for 2022. I think we're adding one more. And that's a testament to many things. But a large part of it is due to you and your support. And I really appreciate it because I just I couldn't make the podcast. I mean, I'm just being honest, I'm an adult, I can't make this podcast if I don't make money while I do it. So thank you very much for listening and sharing it with other people and supporting the sponsors. You know, you need an omni pod, you get an omni pod from my link, it's a big deal for me. Same with Dexcom contour, G vote, voc touch by type one, if you support the T one D exchange by taking their survey trial to try this out this year a little bit. Maybe there'll be back next year. Everything I mean, it's just it's common sense. But when you support those things, it allows the podcast to go on. So there are links in your show notes and links at Juicebox Podcast comm to all the sponsors, and if you should need them, I really appreciate it if you use my link.

Linda 3:31
Hi, my name is Linda. And I have a son Dylan, who's six. He was diagnosed almost a year ago now. And we live in Pennsylvania.

Scott Benner 3:41
I was born in Pennsylvania.

Linda 3:44
I live outside of Philadelphia.

Scott Benner 3:49
Alright, hold on a second. Linda will bleep this part out. I'm sorry. No, no, that's not over. No, no, no, no, don't we're not starting over. What do you think this podcast is some like well, like, like edited thing. I'll just think I'm gonna ask you a question. Then I'm gonna bleep out your answer my answer. Okay. Where do you live outside of Philly? I live in. Okay, I grew up in

Linda 4:13
oh my gosh, what a small world. I can throw a stone they're

Scott Benner 4:17
saying you started saying outside of Philly. And I was like, only people in the Northeast say that is like outside the Northeast. Like nobody says they live outside of Philly. If they live out, you know, on another side of the city. It's that it's very, it's a specific colloquialism to.

Linda 4:34
And I'm not originally from here, so I think I picked it up just by being here.

Scott Benner 4:37
Yeah, I have to bleep all that out. But no, don't be Stop saying you're sorry. So I don't sound weird to you do I

Linda 4:45
know not at all.

Scott Benner 4:47
For the rest of you. Suck it. That's amazing. Finally, somebody thinks I sound normal. Excellent. We're gonna have to say water. Oprah Winfrey, and all kinds of things while we're talking so we can hear our accent. better.

Linda 5:00
I see now that's funny. I don't have this accent. I'm from Boston. So I parked my car and I go to the bar and order a beer.

Scott Benner 5:07
Well, fine. We'll just just try really hard for me not to say water. Then while this is happening, my kids are like, it's water. I'm like, I don't think it is.

Linda 5:18
Let's see, when I go back home to Boston, they say I have a Philly accent. But when I'm in Philly every once in a while, they say you've got to Boston. So I don't know what my accent is for Goodman anymore.

Scott Benner 5:27
Anyway. So you were just asking me a second ago? You said the use the term the podcast is blowing up? Yes. And it's funny because it is. And yet I don't think of it that way. Because I've been working so hard on it for so long, like to me, I can see the slow progression of getting to this spot. But when it starts doubling on itself, then I can see where from the outside like, look, it's blowing. It is like I'm not arguing with Thank you. Let me start with that. I'm not arguing with the sentiment. It's just that I see it from, in my mind as an idea in 2014. And I see the first month, getting as many downloads as we going to say that the show is going to get the next hour and a half. Wow, you don't I mean, amazing. Yeah.

Linda 6:19
Well, you're doing great things. And I found you a little bit late. I didn't find you till a couple months into diagnosis.

Scott Benner 6:25
Okay. Well, that's, I mean, that's not I have to say something. So to give you some perspective, that's really early. And I'd be if the podcast is helpful for you, I'd be really grateful about that. Because a couple months in is still enough time. You're not cemented and any of the ideas that anybody's given you. You haven't been, you know, suffering for years or anything like that. So I think for you and your timeline, this is it's great timing. I mean, if it worked out unless you're on the show to tell me how much it sucks. And then No, it's

Linda 6:57
it's been, I found that it just the right time. We were four months in. I mean, I wish I had found it earlier. But we had just the first three months, no one really talked about Pre-Bolus thing.

Scott Benner 7:09
Yeah, no, it's not something commonly gets brought up. I don't think

Linda 7:13
No, on my three month appointment, they're like so have you started to Pre-Bolus and I was like, what? What's that? No one mentioned it.

Scott Benner 7:20
Were you gonna bring it up? Cuz? Yeah.

Linda 7:24
But I just started it like the week before. And then I you know, I started listening to the podcast and everything. So it's yeah, it came at just the right time for me to I had kind of settled into the diagnosis. I know that sounds weird to say, but, you know, just accepted it and said it started sort of getting on solid ground a little bit thick. And we were starting to know what we were doing. But we were still in honeymoon, obviously. So it was easy. And then we found the podcast as things started to change, and we had to adjust and he was still MDI them.

Scott Benner 7:58
What did not What did unsettled mean? Were you online looking for cures were like, what was what did not feeling accepting look like?

Linda 8:10
Um, I wasn't online looking for cures, I'm a type A. So I just want to I want to get in there, get my hands dirty and figure it all out. But because of the pandemic, so that's kind of why we're talking because he was diagnosed during a pandemic. So there aren't a lot of live resources, like somebody that I could go to and ask or see. I mean, our doctor's appointments after we left the hospital were telehealth. The JDRF wasn't hosting any events. There's a local chapter here, near me, of parents that put something together, they're not hosting live events. So it was really, I was looking for a tribe kind of online and didn't know where to go. So I was kind of unsettled that way. There weren't many resources in person that I could go to or someone that I could speak to. And the two tribers moms that I found that were the most help. I just found online through my local on Facebook, my local town, I just kind of posted about how to get rid of sharps and needles in our town does anyone know? And the other mom of a diabetic in our school happen to reach out to me. So and that was pretty neat because my son was diagnosed August 8, which was about two weeks before he started kindergarten. And we already started to meet at first it was crazy. Two weeks.

Scott Benner 9:39
He started virtual kindergarten. Yes. Got in person diabetes. Yeah. And can I ask did you post about the sharps just to find out about the sharps or were you hoping kind of quietly that someone would be like, like it as diabetes to where I have You, did you have any underlying thoughts? When you said that sent out that message?

Linda 10:04
Absolutely. I was looking for, you know, for some help. And I found it. And then the other time I posted online was, I've got a Cricut machine that people talk about, and the overlay patches, I wanted to see if I could, you know, create his favorite characters on them. So I had posted in a group on Facebook for that. And I found a mom out of Florida, believe it or not, which is not where I'm from. And she connected with me. And she actually told me about children with diabetes, and the friends for life conference, and all that. So

Scott Benner 10:41
you learn as you go, you take a little bits from people, okay, I don't want to get too far away without asking what Cricut machine is?

Linda 10:48
Oh, I'm sorry. So I actually have a silhouette, which is similar to a Cricut. So you cut vinyl, you make decals, and T shirts, and all sorts of customized things. So I was looking to make customized overlay patches.

Scott Benner 11:00
Gotcha. I just You said it like, like you were saying my left hand and I was like, she really knows what that thing is. But I don't understand what it is at all. Hey, yeah, I have to tell you, I'm now calling clock. Now setting up need for me to bleep myself more. But you know, my wife went to art.

Linda 11:23
That's in my backyard.

Scott Benner 11:24
That's literally right by where you live. I have a I have a fantastic story about this school that has nothing to do with my wife. I was dating a girl who went there when I was much younger. And they were going away on some senior like trip. And I was a little older than her. So I was out of high school. And I also did not go to that school. And I drove her to the school to drop her off for the trip. So we drove up, the parking was atrocious, he had to park across the street at this shopping center. Right. And I walked her over and spent I don't know, like 15 or 20 minutes milling around and saying goodbye and stuff like that. And I think with that he's saying goodbye means you kiss. And so we're saying goodbye. And you know, she gets on the bus. And I walk back across the property across the street through a parking lot to get to my car, you know, thinking I wonder what I'm gonna do with my one week of not being like a dating person. And then I get to my car and realize my keys are in her pocketbook. So I am now sprinting down the road, waving my hands at Subway. And the bus finally comes to a stop and I just look her in the face. And I go, you have my keys and the windows are shut and she gets this look of like shocked horror surprise on her face and starts rooting around in her stuff. And then I continue to run to the bus until it stops at another light when she puts the window down and Chuck's the keys out the window at me. Without saying anything to the bus driver. Nobody ever knew what was that I couldn't. I couldn't like overtake. I'm not that quick. I couldn't overtake the bus. You're lucky there's so many lights on. Oh 100% I could just keep up and then like, catch my breath and then keep up again. And then I took what ended up being like a 15 minute like sad walk back to my car. Anyway, she cheated on me eventually. Lovely girl, though, in case she's listening. I'm sorry. So I just don't There's nowhere else for me to ever tell anyone that. Yeah, you're the only one that has context for the space and everything like that. Anyway, that's that's kind of stupid. Well, what were some of the signs? Are we saying your son's name? Yes. What's his name has been stolen. All right, Don, what were some of the signs like how did you? I mean, like, did everybody in your family have type one? And you were just like, oh, it's his turn? Or how did you figure it out?

Linda 14:15
No, nobody at all had type one. So he was just going to the bathroom a lot. And he went to bed which he had never done since he was potty trained. Like he was never one to wear pull ups or anything like that. And yeah, and that was it. And so we caught him pretty early is able to see a diagnosis was 8.3. So I think that's coming up super early. But if you don't mind, I'm gonna go a little bit back because we kind of had it in our minds a little bit from, like 10 months before. So 10 months before diagnosis. He was going to the bathroom a lot. He wasn't drinking a lot, but he was going to the bathroom. And we took him to the doctor thinking he may have an infection or something weird for a boy, but let's take them. And they tested and everything was fine. And the doctor said, sometimes this happens. It only lasts, it can last up to six months, but it might only last a month. Let's just keep an eye on it. So they had this big, long, confusing name for whatever the diagnosis was. Said, Okay. So then the that was in an October the following March, so six months before diagnosis, he woke up one morning and he couldn't walk. And he said, his legs really hurt. And I called out of work, it was March 2, and took him to the doctor. And he had a lot of muscle breakdown in his legs. And she we had ended up going to the hospital to get some blood work done. Because if your muscle breaks down too fast, it can damage your kidneys. So they needed to see if he had kidney damage from whatever was going on. And he didn't. So we took him home and she just called follow up the next few days. And he was kind of shuffling around like an old man by the end of the first day that he went to bed and he couldn't walk again the second day. And it was really scary. And they just said it was a virus and we had to just feed him up to water and He'll get over it.

Scott Benner 16:19
Can I ask you right in that space? Do you? Are you thinking there's something seriously wrong with my kid? Or are you hoping it's just the virus? Like which way does your brain take you?

Linda 16:28
I'm an eternal optimist. I'm just thinking it's a virus. Okay. Um, but I do want to say this is two weeks before the Coronavirus was announced.

Scott Benner 16:37
Oh, oh. Oh, so we should play like old timey Dumb Dumb Dumb music like scary music. So go ahead, keep talking. Sorry. Go ahead.

Linda 16:49
That's okay. Um, so that was it. It just lasted two days. And a week later, they checked his numbers again, to make sure that he didn't have kidney damage from it. And we moved on, and everything was fine and great. We had a great summer. And then August came now because COVID Two weeks later, they were saying kids don't get it. So couldn't have been that right. Um, and but then right before diagnosis, they were saying, Oh, no, it's an inflammatory disease that they're seeing in kids that might get corona. So I start sort of thinking, Oh, well, maybe. So when he did get diagnosed, because he was drinking a lot into the bathroom, you broke the bed once. I asked the doctors I said, hey, could this be? And they said, Oh, no, no, definitely not. But I don't know. I kind of think my mom's intuition. So now there's studies coming out that it might be linked. But back when he had the virus in his legs, we didn't know about Corona. There were no tests for antibodies. And by the time six months later, that I tried to put it together. The antibodies would never wouldn't show up on a test if they took it. Okay, so we will never know.

Scott Benner 17:58
Yeah, so Okay, so the atrophy, I guess, in his legs, with was it accompanied by anything else, there are other symptoms. Nothing, nothing else. Just

Linda 18:11
he just couldn't walk. And I noticed that because I thought he just had a charley horse because he woke up in the morning with it. So I carried him down to the couch. And when he sat on the couch, he had his legs like straight out, like kids wrap their legs underneath them and go in all these crazy positions, because he was five. But he had his legs like straight up in front of them and just looked awkward. Uncomfortable. Something's not right.

Scott Benner 18:38
It's just odd that you went to a hospital twice for something that was serious enough that they were like, Let's make sure his kidneys haven't been damaged. But then head home, like and then was there any instruction and head home

Linda 18:51
water? Just give him lots of water. That's it.

Scott Benner 18:57
That's just water. Catchy, doesn't it?

Linda 19:00
Yeah, well, and I got really nervous the second day, cuz he's gonna shuffle it around at the end of the first day. So I'm like, Okay, well, we're gonna get over this. And then the second day when he woke up, he couldn't walk again. And the doctors got nervous, then maybe take them in for a consult for a second time. Just to kind of look them over.

Scott Benner 19:18
Did you ever come close to you going to chop?

Linda 19:21
No, not until diagnosis in August? Well, no, we went to a different hospital to get the blood work done. Okay.

Scott Benner 19:30
Well, that's really weird. Did you you don't have a diagnosis for the leg thing? No, it's a viral spiral. But do you think he was do you think that diabetes was present at that time?

Linda 19:47
I don't know. I'm trying to figure it out. Because like I said six months before that he had been paying a lot for one month. Yeah. So I don't know if it may be just exacerbated it and brought on The diagnosis maybe sooner, maybe? I don't know.

Scott Benner 20:04
Yeah. I mean, so, listen, we all know that. And if you don't know, welcome to the show that you know, you, if you end up with type one diabetes, you have these genetic markers that, that make it predispose you to having type one at some point. And the more of these markers you have, the more likely it is you're going to get it right. I forget the exact number of them. But I think there's five if you've got three, like you're getting it at some point, it's happening. So how it ends up happening, you know, a lot of people have stories about I got sick, my son got sick. And then this thing happened. Arden had coxsackievirus then she had diabetes, like, you know, and I think the confusing thing is in the terminology, where people will say like, oh, I, I had a, I had Coxsackie. And that causes type one diabetes, it's like, well, it didn't, didn't give you diabetes. It's not like, I don't know how to put it. If you're walking down the street, and you have a coin in your pocket, and someone walks up to you and tells you there's a coin in your pocket. They didn't give you the coin, right? They just made it they made it aware you made you made you aware of it, and so that you can get a virus that will then make your body go, oh, geez, I'm super sick. I'm gonna go attack this virus, I got really confused and attacked my pancreas instead. Like there's something in obviously, I'm not a scientist. And but there's something in that I just always want to be sure that people don't talk about it like a made B happen out of thin air, like a might have put things into motion that caused B to happen. It's an important distinction, but

Linda 21:42
I'm sorry. And I believe that because I'm listening to your podcasts. I found out that it's autoimmune. And my mother and my husband. Both have thyroid issues.

Scott Benner 21:52
These bastards. I knew it was someone's fault, Linda, we figured it out. Yes. What else do your pasty family members? Are they from Ireland? or England or something like that? Yes. Do a podcast where everybody's from Ireland or England at some point in their family life and they have like, autoimmune stuff wrong with them. Ah, it's just it's a good bet. You don't have to be from there, obviously. But it's just

Linda 22:20
my grandmother's from Cook County or county coke. I don't know how that's yeah, Ireland.

Scott Benner 22:25
Well, you live in Boston. So you know, it was hard to put together. But, but any other autoimmune stuff for them? Or is it just thyroid? Just die? Right? Do you know if they have Hashimotos? Or if they have hypothyroidism?

Linda 22:42
Find out. I don't know, my husband would know which one he has. But I think it's Hashimotos. But I'm not sure.

Scott Benner 22:48
And that's the auto immune version of it.

Linda 22:51
Not There you go. You can hear my mom actually had half her thyroid removed.

Scott Benner 22:56
Ah, interesting. Any other kids? Linda?

Linda 23:00
My husband has a daughter, who's 20. And but we have no kids. No other kids together. Gotcha. Gotcha. Gotcha. Gotcha. Gotcha. And they told me she didn't need to get tested. Because it's not the same parents.

Scott Benner 23:13
People don't know. Talking about. If you do try

Linda 23:16
on it. They I asked if we should test her. They said no.

Scott Benner 23:19
Yeah, trial net needs more funding so that they don't have to say stuff like that. I it just doesn't fall in the parameters of how they do it. I would imagine. There's there's an there's other tests you can use that you'd have to pay for. But you know, it's up to her obviously. Does your husband have any brothers or sisters? He has a brother. Does that brother have an autoimmune issue? Endor children?

Linda 23:46
No, no.

Scott Benner 23:47
Oh, interesting. Yeah, like there's a whole lot. Yeah,

Linda 23:50
well, and here's another interesting fact, when we were at CHOP with the diagnosis, they had told us that the last 30 families that had been through chop in August, there was no genetic link.

Scott Benner 24:06
Yeah, but people always say is their diabetes and your history? They don't. They don't ask about did your great grandmother have celiac? Because you know, or something like that, which in my mind is a genetic link, but I hear what you're saying.

Linda 24:18
Now that you say that I had a cousin who had celiac course,

Scott Benner 24:21
it you shouldn't start a podcast about something you'd become like a like a savant. And I think I'd be an idiot savant, an idiot savant. So right before COVID, like strikes and hits, your kid gets diabetes, everything is virtual. Was this your first experience with virtual like doctoring?

Linda 24:41
Yes. And actually, they did a telehealth to diagnose them and then they said no, I need to come in because they wanted to check his sugars. So wanted to telehealth and it turned into no come into the office park in the parking lot milk amount get you

Scott Benner 24:57
right now. They say he has diabetes. What do they do now? Do you live in your car in the parking?

Unknown Speaker 25:04
They sent me down to chop.

Unknown Speaker 25:04
Okay.

Linda 25:06
They said no, it's a job. I could I tell a kind of a funny story.

Scott Benner 25:09
So we go absolutely not with a don't

Linda 25:12
say test his blood sugar and he had a granola bar for breakfast that morning. I'm just gonna say that, okay, because granola bars spiked us like crazy. We know now. So he went in and they took his blood and it was 536. But too bad. But my eyes got super wide. I didn't know what the right number was supposed to be. But I knew it wasn't supposed to be in the five hundreds. And I had promised myself that he was good because he spied during this appointment, knowing that they would probably participant her. I said, well go to the Lego store and we'll get you some Legos. If you're a good boy. Well, the doctor says you need to go right down to children's hospital right away. And I said, okay, and I get in my car. And I'm like, I promise this kid like, I cannot take him to this big Children's Hospital knowing we're going to be there for days. And like not going to miss Legos and not going to miss Blinky. Literally went to the Lego store, grab something real quick came home, grab his blankie before we went to the hospital, so that's my dad mom moment, but

Scott Benner 26:11
it's not law. Everyone has some sort of story like that, where they're just like, Ah, so we waited till tomorrow, you know, like, I mean, it wasn't that it you don't have context like, let me ask you right now, if in that exact same situation, another child was diagnosed, would you go to the Lego store first?

Linda 26:31
I went, but I had the insulin so I can get an insulin first.

Scott Benner 26:34
I guess I I guess I should ask differently. If you had if you knew about diabetes, what you do now? Right?

Linda 26:39
I would not have absolutely not. You just didn't? Absolutely not. That's all I didn't realize how sick he was. Yeah. And they didn't say anything, either. I mean, they told me to go to the hospital. And they told me to go to the Children's Hospital, not the hospital. That's closer. So that was kind of a you know, but I knew we were going to be staying for days. And my husband actually was working. He works weekends, that happened to be weekend. And he was already down in the city. So there was no way that he would be able to come home and pick everything up. Yeah, I kind of felt like we had one shot. And the doctors like a mile from my house too. And so was the Lego store. I mean, it's all sort of on the way and I'm making excuses for

Scott Benner 27:18
why you are it's I think that's the thing where if you retold that story in five years, you would not feel like you had to defend yourself. You don't mean like it's just one of those things he didn't know. So he did what made sense.

Linda 27:31
And he was back in the 300. So I say that like it's nothing. When we got him to the hospital. It was just that granola bar just really spiked him up. But I know he was sick. And he wasn't a dk, I just ketones for God, I think within five hours.

Scott Benner 27:48
Okay, so he's got some function from his pancreas. They'll work and helping them out at that point. Yes,

Linda 27:54
yes. But we knew he was sick, because obviously we want to take him to the doctor. We didn't think he was sick.

Scott Benner 27:58
What was it like at that point going into a major hospital? I mean, Corona was in effect, at that point, know where it was. They just talked, it was Yeah, we were six months into it. Okay, so what was that like being admitted?

Linda 28:14
Scary, because you hear all these stories about people contracting Corona while they're there. And if I know he's already sick, and I was going along, because my husband was working. I mean, he ended up meeting us there within, you know, an hour or two as soon as he could get someone to cover for him. But it was scary going alone. And my son knows about hospitals. He was a preemie. So he's been. He was born three months early. So he's been followed a lot and Benza hospitals kind of throughout his life. And so it was nerve racking. It was like, here we go again. Take just one more thing.

Scott Benner 28:53
So the virus the Coronavirus thing wasn't at the top of your mind, really?

Linda 28:57
Not at that point. It was just, I was afraid that we could get it if he went there.

Scott Benner 29:03
You're afraid for yourself to

Linda 29:06
you know, I didn't even think about that, then. It's it was all about him. It really was.

Scott Benner 29:12
So now do you see I asked you that question. So you can realize you're not a bad mom, are you? How do you like it? Of course you weren't worried about yourself? Right? You would have gone anywhere. Like if they told you that the the only Children's Hospital that helped people with diabetes was the bottom of an active volcano, you would have been like, Okay, let's go. You know, like, it's just kind of, you keep making you get new information, and then you make the best decision you can make, and then you get new information. You just like he was

Linda 29:38
500 Today, man, you know, I can't even imagine he would be would be on our way to the hospital,

Scott Benner 29:44
where you would think you didn't like something would be really out of whack can absolutely be seen.

Linda 29:49
Yes. So we'd be checking ketones and calling ahead and making sure they had a bed ready.

Scott Benner 29:54
How long did they keep them for days? Okay.

Linda 29:59
And I think That was more of our training for the parents training.

Scott Benner 30:04
Yeah, like the third and fourth day, you're like, we should leave this hotel box. Yeah, no breakfast is dry, and there's nothing to do in the afternoon.

Linda 30:17
That's the other thing while we're in the hospital, and they hand you the menu to order his his meals. And they tell me he can eat whatever he wants. Okay, so I know nothing about diabetes, except for everybody always thinks type two. So like, What do you mean, he can eat? And I thought that they were just going to tell me that like, while we were at the hospital while he was in a controlled environment, and I thought when we went home, that he was going to have to stop eating everything.

Scott Benner 30:42
Oh, really? Yeah,

Linda 30:43
I had no idea. Like, I wasn't believing that when they told me he could eat anything he wants. As I'm looking at the menu that has the carb counts. I thought they were just going to maybe easily back it off. And, you know, slowly make a lifestyle change or something.

Scott Benner 30:56
Later, we're gonna take a detour for a second because you just said home. And I just finished watching the mayor of East town on HBO.

Linda 31:04
Did you watch three C three episodes, and

Scott Benner 31:07
I won't ruin anything for you. But what's the Titanic girl's name? This the lead? Oh my god. I mean, Kate Winslet Kate Winslet. So she's obviously not from around here. And someone gave her some diction, lessons for Philly. And as that thing goes on, you'll realize they they seem to work in a couple of the words so that you can hear the Philly accent except it's way off and it to me to my ear. And she's when she says home she just home. Like it's just she's not even from the United States. No, no, she's from the island I believe. So it's it's whom she has him and you just and I was been making fun of it for seven or six episodes of the movies town, but then you just sort of did a little bit. I was like, Oh my God. I was like, was Kate Winslet right. I told you my exits from all over the place. Yeah, you're a little so that makes more sense. Because there's, anyway, it's a depressing series, but it's well done. And, but it's a big issue just like it's him. And I'm like, whom? I don't think we talk like that. But then again, I don't know. I say water. So what the hell you don't even no idea really. Anyway. I'm sorry. It's okay. Okay, so you're super new at this still then? Like a year?

Linda 32:36
Now? 10 months? Yeah. August will be a one year.

Scott Benner 32:40
Do you feel new at it still?

Linda 32:43
I do. I get really nervous because obviously he's still in honeymoon. But he's, we've had to double his Basal twice. But because they were so small. When we started to me, I'm like, Oh, my gosh, I'm doubling. But it's still only small increments. And they still say he's in honeymoon. So when I have to mess with Basal and carbery issues. I get nervous,

Scott Benner 33:05
too. Why? Yeah. You sent me pictures. Oh, yeah. I guess is he 60 pounds.

Linda 33:11
You know what? He's a lot when he's 51. Now, he lost a lot of weight after diagnosis, because he's, he's always been a good eater, but he's not snacking as often. And that's his choice. Not ours. Okay, you know, yeah. eating healthier. So he was I think he was 51 pounds a diagnosis but before that he was close to 60.

Scott Benner 33:33
Is he MDI or pump?

Linda 33:36
We got the Omni pod a couple months back. So we are potting are so excited.

Scott Benner 33:41
Oh, cool. And he, but he's not snacking as much. There's before. Do you think it's a decision about diabetes? Do you think he's trying to not intersect with the diabetes decision? What do you think he's just not hungry?

Linda 33:54
He's just not hungry. Because it is, but it's so kids are funny. So he'll ask for non carb snacks. Like he'll ask for a cheese stick sometimes to like, if he's hungry, then he doesn't really want to deal. I think what the diabetes, he'll ask for a cheese stick. Or he knows we know that's a healthier snacks. And we knows we might say no to cookies, but okay, go ahead. Have a cheese stick. Okay.

Scott Benner 34:18
Um, were you limiting and I don't mean limiting in a bad way. But like were you avoiding foods when he was on MDI? Just so you wouldn't have to inject or was that not happening?

Linda 34:28
No, we didn't avoid anything. The everything is I want to say he was getting a little bit. Wait, just to say this for five years. He was getting a little chunky. Okay. The January before diagnosis. So eight months before diagnosis as a family. We changed the snacks he was eating. So we went from goldfish and things like that to we gave him a drawer in the fridge with his name on it. He was all excited and it would have cheesed x would have pudding was the one thing that he could think that he was getting something you know really good, but it would have fruit cups and applesauce and yogurt, the yogurt, go, go go Gurt sticks. So the January before diagnosis, we started giving him healthier snacks to sort of keep him healthy as a kid. And he's a good eater, like I said, so that's another reason why we didn't notice the weight loss before diagnosis because we were like, Oh, this is working great. You know these healthy snacks. You changed it eight months before diagnosis the way he snack.

Scott Benner 35:36
So you just thought you were a genius.

Unknown Speaker 35:38
You're like,

Scott Benner 35:39
I got this thing other people complain about it. But look how easily I handled this. Rescue suckers don't know what you're doing. I put a name on a Georgia kids out of his mind eaten all kinds of stuff that isn't junky anymore. And I when look at me, you're probably getting ready to buy yourself a crown in the scepter walk around town. I was ready. I was ready. Go let the other ladies know how you've conquered having children. I bet you don't feel like that anymore. Oh my gosh. So what what are 10 months in 10 months in how long? Have you had a pump?

Linda 36:21
Oh, gosh. I wrote it down. So I would know too. We got to march 1, so we've had a pump. Three months.

Scott Benner 36:30
Okay. Alright, so and CGM using any kind of CGM Dexcom. Okay. Had you had that before the pump?

Linda 36:37
Yes, we got that. Three months and, and the Omnipod. They said we could have gotten it five months, but it took two months to get it through, you know,

Scott Benner 36:46
all this. You know, the truth is for people listening, Linda, if you get on the phone about every 48 hours with your insurance company, you'll get a lot faster than that.

Linda 36:57
So even know what the issue was, it was a crazy issue. So in order to get it, we needed notes from two different doctor visits. But because we were at the five month mark, we only had one visit with the actual endocrinologist. So they kept saying we need to we do do and that's what saying, we sent you everything. I had to get on the phone eventually. And you know, tear it up for 48 hours and say he's only seen the endo one time.

Scott Benner 37:24
Two things. I don't know why in this day and age. Medical facilities can't figure out communication, but they're terrible at it still and your phone ringer just made me realize how much I unnaturally love a Devil Wears Prada. The Devil Wears Prada. I love that movie.

Unknown Speaker 37:46
I think I've always seen it like once. Oh my God once a year.

Linda 37:53
Now I'm gonna go back and I'm gonna watch

Scott Benner 37:54
it. I don't know why. Honestly, it's maybe it's something to do with Arden watching it or something. But I've seen that movie like a dozen times, I think. And that ring is her. Is her cell phone ring. In the movie.

Linda 38:08
I'm trying to find the connection. I was like, I don't get it. Yeah, no,

Scott Benner 38:10
no, that's what just happened that I was like, oh my god, Miranda. Oh my gosh, I'm this close. I'm holding my fingers about two inches apart. I'm this close from being a lady at this point for being for being a stay at home dad for 20 years. I if I had two ovaries, I could probably make a baby.

Linda 38:32
I'm jealous. I wish I could have ever stayed home.

Scott Benner 38:34
Oh, yeah. It's fantastic. Not working. I mean, being home with your kids is a wonderful thing. I mean, I mean, oddly, both of those things, not having to go to a job every day is wonderful. And I

Linda 38:50
did it for the first couple years. Did you like it? Well, I did it for the first year. And then I went part time for about three years. I did. I loved it.

Scott Benner 38:59
Yeah, I have a, I think I have an understanding of my kids that you can't get from being around them intermittently. So and it's sort of like, this is odd to but maybe not unlike the podcast and having. I mean, I don't even know at this point, you're probably like close to the 600th conversation I've had, right. And just being around other people, and getting to kind of absorb how they feel about things and how they see things and getting to watch them from afar a little bit and have personal conversations with them. You just get a feeling for things that it's not possible another way. And so being with the kids every day and having that same interaction with them, you know, I might know things about them that they don't know and yet the bigger impact is how the way other people see the world changes me. Like that's the that's that's the real value for me. Like I don't think anybody would listen. But everybody should have a podcast, you know, or, or just call people on the phone, I guess you want to record it if you don't want to. But you know, like having those real. And I'm in an interesting situation. Whereas if you were to call a friend on the phone, right, a friend would feel a little guarded. You would feel like contemporaries. Right, you know, and so I'm in a really unique situation right now, where you feel like, on some level, you need to answer my questions, which is, of course not true. You could say no to anything. But you, when people come on, they're very agreeable to having an honest conversation. So then I get to hear more of what they're really thinking and less of what they're willing to tell people, if that makes sense. Yes, yeah. So I mean, you've you've already said a bunch of things that, I don't think you would tell somebody in a regular course of a conversation. Yeah, right. So I when I do, I get to have that, like, I get to have that experience. And you get to share it with a bunch of other people, which is really cool. So what success look like today, what are your like? What are your goals? For like variability? Where do you have your high alarm set your low alarms? What's your a one seagull? How do you think about all that?

Linda 41:19
Sure. So I want to be sub six right now. We're six one and six to what our last two appointments. So I keep telling my diabetes educator, we're going to be sub six. But I feel like we're struggling with that. Because there we go.

Scott Benner 41:37
What's the highlight of that?

Linda 41:40
mindset at 152? So I can do something with it. Right? Yeah. And he had waffles this morning, so yeah, we just hit 158 Geez, I know.

Scott Benner 41:53
Oh, you make the waffle by hand was it from a restaurant? It was a frozen? Was LEGGO

Linda 41:58
my Eggo toffee 20 minutes before I had to jump on with you.

Unknown Speaker 42:04
Later,

Linda 42:06
no. sugar free syrup.

Scott Benner 42:08
Yeah, but those Eggo waffles are hard to Bolus for? Yes, yeah.

Linda 42:13
You got it. He hasn't had one in probably two months. But he was asking me for the special breakfast that I make him on weekends, which happens to be cinnamon rolls. So we're like you, we don't shy away from food just because of diabetes. We just try and stay on top of it.

Scott Benner 42:30
I have a great waffle recipe. But man, it's a lot to make it

Linda 42:33
do not have a waffle maker. You have to send it to me.

Scott Benner 42:36
Yeah, it's a it's a great recipe. But I mean, there's buttermilk in it. And you're you're fluffing egg whites, and but it works out really well. When you're done. You're like I shouldn't be eating this.

Linda 42:47
Feeling everything in moderation. Yeah, well,

Scott Benner 42:49
waffles pretty big. And you went all the trouble taking out the waffle maker. See, then you're like, well, I'll just have a little more. And actually, they freeze Well, oddly, but they're hard to warm back up. You have to microwave them a little and then toast them to get them back to anyway, this is a rabbit hole. Absolutely. Yeah. Okay, so you're looking for sub six, you're just above it right? Now, when you tell the educator you want sub six? Do they say no, you're doing great? Or do they say Sure go for it.

Linda 43:18
They're kind of funny, because they know on site that they're like, go for it. They said their average is eight. So they told me Don't Don't try and push myself. But they're totally open about it. You know, they said a site an hour for telehealth, and after 20 minutes, they're like, Oh, we looked at all your charts here. Good. You're doing great. So we're really lucky because I hear some other stories. We're lucky.

Scott Benner 43:41
Yeah. Though, sometimes people will start doing better and better and they get yelled at by their doctors, which is fascinating. I also think it's interesting to tell somebody, oh, you have a six one, whatever it is. The average for the practice is eight. So you're doing great. I guess I don't feel that way. I feel like what they should be saying is, oh, you're six one, the average for the practice is eight. We're not doing a very good job. Like why are they using other like, do you mean by that? Like, that's a weird thing. Like if you if we were all running a race together, and the average time to finish the race was an hour and you finished it in 30 minutes, and they were the trainer. Why would they not think hmm, apparently you can finish this race in a lot less time. Like why

Linda 44:23
he was diagnosed in 8.3.

Scott Benner 44:26
Right? Well, and he also probably is you're saying he's still honeymooning Tuesday do you think you're getting but I'm just

Linda 44:32
saying you're telling me where I have to be in the hospital for four days because I'm an 8.3 Your patient tell me Oh, the average is eight.

Scott Benner 44:43
Well, yeah, I mean, listen, there's a lot of people have different financial situations. They have different technology they have different abilities and levels of understanding so I get why I get why people's they want these could be easily like that makes sense to me. I also understand Then like for adults listening, like I guess I was saying that more around children. But for adults listening like I can also get how you could get burned out or just like, go through a number of months really like a, you know, me I'll Pre-Bolus After I eat, we'll call it pretty post Bolus, like you can see where you could get beat up by it. But I'm just saying like from the doctor's point of view, why is the thought not? I wonder how we get everybody closer to six, instead of just treating you like you're special for being at six? I mean, not that you're not I'm just saying I don't know why they don't go deeper into their own. You know, you are special. I don't think you are. Well, also, let me get my pen. I think you might have just named the episode a different kind of special Good job. I leave it up to you guys. to name your episodes. You don't realize it's happening. But it is.

Linda 45:59
Yeah. So the only other thing if you don't mind, the only other thing I wanted to talk about with the whole diagnosis during the pandemic is I told you I found my tribe. You know, I found moms that I can connect with. Through friends for life. They do mom's for life, like every other Monday, they do a zoom so I can talk and ask questions, and they've been absolutely amazing. But Dylan hasn't had anyone really to connect with. Because we've been virtual for school. And that's just been we went virtual to hybrid virtual to hybrid to full time by the end of the year. So that was that's interesting, too, by the way, trying to get sugar's under control. Where school is very different settings than home. I feel. Yeah. To go from home to hybrid to home to full time has just been a crazy roller coaster ride for us to

Scott Benner 46:55
use at home again. So it's just a bonus for me really.

Linda 46:59
Yeah. And now we've got the pool and the neighbor's trampoline, that's always fun.

Scott Benner 47:04
You got a lot of stuff going on. A lot of stuff going

Linda 47:07
on. But but my problem is he doesn't have any other kids that have it that he can, there's 1/4 grader in his school, but it's not really his peer, because she's four years ahead of him. Yeah. Um, so we haven't been able to see anyone his age except we are going to, in two weeks, we're going to go to the friends for life. So that I can meet the moms that I've been talking with online, and he gets to meet kids his age,

Scott Benner 47:33
you're going to go to Florida. Yes. Okay, they're doing it again.

Linda 47:40
And we're gonna do the parks for two days. He's a big Star Wars fan. So he's excited. Sounds great. I mean, I'm just, I just want him to feel like he fits in. And he, he gets involved a little bit with his care. I mean, he can look at a number know if it's good or bad or things like that. But I want him to maybe take a little more independent, I don't want him to be in charge of it at all. But I want him to feel more normalized and sort of maybe be able to ask questions to people other than us. Maybe someone else can explain it to him differently than I could. Yeah,

Scott Benner 48:15
I think it's there's, you're going to see a lot of people who have his experience, at least it'll be a shared experience. And that I would imagine would make them feel part of a group, which

Linda 48:27
I'm hoping maybe if he sees an eight year olds, that he can kind of look up to doing something on his level that he might want to

Scott Benner 48:36
think about how to get that. It's, I have a couple of episodes with younger kids. But not many, although somebody just put up a list yesterday on the are you in my Facebook group? Yes. There's one in there, I put it up with a picture. Somebody made a list of episodes that had people on who are 18 and under. And I was surprised it's 23456. I was like 14 or 15 of them so far on the list. Which i i Even I didn't think I'd spoken to that many kids. But I guess over the years they pile up and I don't I don't realize but I mean a six year olds not listening for a podcast like I mean, if you were listening in the background, and there was a kid on, maybe there'd be like a fleeting moment where he's like, oh, there's a kid who has diabetes, you know, but they're not, you know, he's not looking to listen to some of these conversation I wouldn't imagine.

Linda 49:32
So that's kind of been a little bit of our struggle, I think, not really a big struggle, because he doesn't have to know but I would just like him to have it a little more normalized.

Scott Benner 49:43
Do you think it's not?

Linda 49:47
Well, it's not so much with the PA but when we were MDI he would be embarrassed like out at the restaurant. If we had to, you would want to go to the bathroom. And I would kind of say no, we're just no one's gonna watch. It's okay, we could do it right You know, we'll put you on the inside of the booth and we would kind of work on that. So I think he's a little bit shy about it.

Scott Benner 50:10
It's really helped. You're from Boston and Philly and you said, don't worry. No one's gonna look you didn't say them.

Linda 50:18
But this is a clean podcast.

Scott Benner 50:20
Yeah, I know. But I want to know what you were thinking. When you were talking to that kid. We can bleep out the rest. I was thinking I was speaking slowly. Honey, how about Mommy gets up and kicks everyone's ass and then we'll inject how's that sound? Shot beat it some heads and then we'll do it. Anybody looks your ways getting one right now.

Linda 50:42
Right. I am definitely that kind of mama tell. So I understand. Yeah. I just want he's actually not gonna Vizor right now. Let him say hello. Real quick. Of course. Hold

Scott Benner 50:55
on be great if he said

Unknown Speaker 51:02
we're talking about re diabetes. Can you hear me? Hi, Scott. Hey, Dylan,

Scott Benner 51:07
can you hear me? Alright. Hey, Dylan, how are you? Okay, cool. How old are you man? 16. Wow, I do not remember being that young. That is really cool. Do you enjoy any sports? Or what's your favorite TV show? Oh, golf. Yeah, do you guys don't watch the Eagles? No, no football. That's great. You can see. What about I heard you're going to Florida? What are you going to do while you're there? Oh, one rides. Yeah. There's a really cool ride of the Millennium Falcon. That you should check out in the Star Wars Park. And while you're there, so many characters from the movie are going to be walking around. It's really great. Awesome. Yeah, it sounds fun. Cool. Hey, I heard you have an omni pod and a Dexcom. My daughter has that stuff, too. Oh. Yes. Yeah. My daughter does too. She's older than your she's 17. But she's had diabetes since she was two years old when she was a baby. I heard you just got it recently. Wow. Yeah. How are you doing? Yeah, things are okay. Well, that's cool. I want you to know that I know so many people who have diabetes, and they're all cool people. So you must be cool, too. You think you are? Yeah. I think you are too. Alright, Dylan. Well, thank you for talking. Let me say goodbye to your mom. And then I you can have her okay. Okay, all right, man. Have a good day. I stopped by Dylan. Thanks for being with us. Are you kidding me? Finally getting some people on my intellectual level to speak though? I was tired of feeling like you were smarter than me. He's adorable. Good for you. Congratulations. You're not making more babies. Right. Are you? Are you an older mom? Not like, Yeah, I know everything I can really read through people.

Linda 53:33
Well, I kind of gave a hint when we said you did 20 year olds. But yeah, I'm an older mom.

Scott Benner 53:38
I don't know your husband didn't meet a girl in fourth grade and make a mistake. I don't I wasn't sure. You can't get pregnant when you're in fourth grade right now. That's physiologically impossible. I boy.

Linda 53:51
I think I take things a little bit more in stride, I think.

Scott Benner 53:55
Yeah, right. You have a little more life experience.

Unknown Speaker 53:59
Yeah, just different. Yeah,

Scott Benner 54:01
I know. Right. I mean, I was so young when we had kids. And Kelly was, you know, I basically stole Kelly from her family. So she was like, young. And we didn't know what the hell we were doing ever. Like nothing. We never had any kind of like life experience to draw on for the next life experience. Like you were making everything up as it was happening. The diabetes thing was

Linda 54:26
one of the first things we were an adult a little bit more of a perspective. Like, I think if I were when I was younger, I would it would have been the end of the world for me. You know, I would? I don't know. I think I just would have taken it a lot harder. When I'm when I was older and could say okay, you know what, we'll meet this head on and we can do this and we'll make it work.

Scott Benner 54:50
All right. Well, listen, I don't usually end so abruptly. But Dylan clearly needs you. So sorry. You have apologized to me five times you have way more Life and somebody from where you're at where you live and where you came from should be should just tell me to shut up. I gotta talk to my kid now. But I really do appreciate you doing this and talking about it. It was a it's interesting to hear. I mean, your story's fairly unique. The thing with the legs is I've never heard that before. So that was a, that was really something else.

Linda 55:23
Yeah, it confused the doctor too. Great. That's that's always

Scott Benner 55:27
that's always comforting. All my years I have great. Thanks a lot, buddy. Back to Google. All right. Well, thank

Linda 55:36
you so much for taking the time to talk with me. You have a great

Scott Benner 55:38
day. It's my pleasure. I'll talk to you. I'll let you know when it comes out. I'll do my best to let you know. That'd be great. Thanks. Bye, bye. All right. But I don't

want to thank Linda for coming on the show today in doing such a great job telling your story. And they like to thank you, of course, for all the support and love that I've received from you throughout 2021. There's going to be one short episode coming up before the end of the year. And then we are starting strong strong, my friend. Don't don't even pretend that you don't believe me, because I have got a great week of podcasts coming for you right away, right out of the gate right out of the chute. Right in the beginning. May old acquaintance be forgot. I don't know what that means. Honestly, I mean, what does that mean? Why would you want to forget your old acquaintances? Nevertheless, there's going to be some great episodes coming up for you right away in the new year. So don't drink too much because I need you wide awake on that Monday, downloading some podcasts