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#595 Plane to Maine

Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

#595 Plane to Maine

Scott Benner

Barb is the mother of a young adult with type 1 diabetes.

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

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

Scott Benner 0:00
Hello friends, and welcome to episode 595 of the Juicebox Podcast

the title of this one came down to the wire, I was between plane to Maine and give a hoot. I honestly don't even know what I'm gonna do when I'm done with this, when I go out and actually type the words into well, it's a lot of technical stuff that you don't care about, but where you see the title of the episode, I'm still not sure what I'm going to do. Today I'm going to be speaking with Barbie. She's the mom of a child with type one diabetes. She's got an interesting story about how her child was diagnosed, and a ton more. You're just gonna listen. I can't you know what I'm saying here, right? Like, I can't explain the whole podcast he in 30 seconds. It's, it was a long and winding road. I don't know what we talked about anymore. I just remember having fun and thinking, yeah, BB was good. 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. We're becoming bold with insulin. Don't forget in the show notes of your podcast player and at Juicebox Podcast comm there are links to all of the sponsors support the sponsors support the show.

This episode of The Juicebox Podcast is sponsored by touched by type one, they're absolutely my favorite type one diabetes organization. And I would like very much for you to check them out at touched by type one.org. They're also on Facebook, and Instagram. I also want to thank the over 300 supporters at buy me a coffee.com Ford slash Juicebox Podcast, just nice people who get motivated once in a while to buy me a coffee. It's a really kind thing that you do. There's like 35 members and over 300 people who have done it at least once. And I would love to thank each one of you in person. But since I can't, I'm just going to say it here. Thank you. Thank you, thank you very much. It's very kind. Your messages are extraordinary. The ones that you leave there buy me a coffee. Now I said the thing and you're going to buy me a coffee.com forward slash juice box, the messages that you leave there are just stunning and touching. And I very much appreciate them.

Barbara 2:31
I'm Barbara. I'm the mom of a daughter that has type one. And she was diagnosed last year. I'm also a registered dietitian. And we live in suburban Chicago.

Scott Benner 2:46
Nice. Okay, so last year 2020.

Barbara 2:51
Yes, right. I about six months into the pandemic.

Scott Benner 2:55
Oh, how old was how old? Was she? So?

Barbara 2:59
Yeah, so she was 10.

Scott Benner 3:02
Got it. I'm now making notes. My wife bought me this really cool little whiteboard.

Barbara 3:07
I heard about this. I'm trying to get one for my husband. He's a lawyer, but he likes old school legal pads. So it's going to be a big switch in our households.

Scott Benner 3:18
I've just so kind of sits in front of me while I'm doing this. And I can like so it doesn't make noise. You know what I sometimes I was like, I'd write stuff down on paper and it would be loud. So I can kind of make notes while I'm going in case there's something I want to remember to say which that's where it's become very helpful, because I'll think of a question. And if I can't, if I can't keep it my head, then I lose it. So now I'm just sort of like one wording, like jotting a word down and then coming back to it. It triggers it.

Barbara 3:48
That's so smart.

Scott Benner 3:48
No one told my wife what a good gift. This was.

Barbara 3:52
I don't want her to I might buy one for my husband.

Scott Benner 3:55
What are holding this over my head, but she will. Any autoimmune stuff in your family?

Barbara 4:01
None. Um, it actually you know, and I mentioned earlier that I'm a registered dietician. And honestly, even when I was in school, I didn't really learn about type one. So I mean, they, you know, with a section that we learned about in school, but we never really went into depth because we didn't see a lot of patients with type one. So it was sort of so far off my radar. How long ago was school? Um, so I've been a registered dietician now for 12 years.

Scott Benner 4:33
I was I asked because I'm wondering if you remember what they said about diabetes. While you were

Barbara 4:39
I want you to it's so interesting, because I have a visual in my head. You know, like one of those choking posters, where I'm, you know, like, you're talking about, like excessive thirst. Yep.

Scott Benner 4:53
I know what you're talking about. My daughter's had there was one hanging in my daughter's school that was about signs of hypoglycemia. They're all just like different, different cartoon faces with different levels of like, like horror on there, do you know?

Barbara 5:08
Exactly, exactly. So that that was sort of like the visual that I had in my head. But it wasn't something that I, you know, we didn't even know anyone at the time that had type one

Scott Benner 5:19
in the schooling didn't go deeply into it.

Barbara 5:23
It didn't go deeply into it.

Scott Benner 5:25
Okay. Well, that seems to be about par for the course. But I assume to that course, or I didn't mean these course twice, but your dietitian, that situation or even being a nurse, it's everything's an overview, you're not deep diving on anything until you get into a specialty, I guess.

Barbara 5:42
100% and, you know, I'm in private practice. So most of what I see is weight loss, or sometimes weight gain or healthy eating. Um, occasionally, I see autoimmune conditions, but they're, you know, they're, they're fewer and farther between,

Scott Benner 5:58
Do people ever come to you for to get like a food out of their diet, like somebody comes along and says, I'm celiac now. And I need to know how to transition to it. Do you ever get that kind of question?

Barbara 6:09
100%. And, you know, actually, I don't know if it's a coincidence. But I, you know, been seeing more clients that have autoimmune issues right now. And there are a lot of elimination diets that are now very common, you know, trying to find certain things that trigger inflammation. So I feel like I'm dealing with that a lot more

Scott Benner 6:31
people trying to get rid of like psoriasis, stuff like that. Exactly. Yeah. Wow, that's interesting. I wonder if you're seeing it more. Or if it's like, when you buy a new car, and then suddenly you see them on the road everywhere.

Barbara 6:44
I mean, 100%, I also have to say, since the pandemic, I've been really busy, because I feel like a lot more people have been home. So people are taking time to do things like, you know, figure out their diets and, you know, do more things for self care. Yeah. So it might just be just the sheer volume of what I'm seeing.

Scott Benner 7:06
I guess, when you get extra time, when you're not doing all the things that you used to do. You lose the excuse of like, oh, I would, but I don't have time now you're like, Oh, darn, I have time now. I'm gonna have to just keep telling myself that I guess.

Barbara 7:21
Exactly.

Scott Benner 7:24
Okay, so she's diagnosed at 10. Can did it come on in the classic way did you have like, you know, were you on an airplane over the Atlantic Ocean? Because I mean, pretty,

Barbara 7:34
pretty much had to get on an airplane, not over the Atlantic Ocean. But um, you know, when when COVID struck in March, my girls, you know, had sort of been home and my daughter was dying to go to camp. And her sleepaway camp was one of the few camps that were running. And we were a little bit nervous to send her but she, she begged us to go. So, um, that camp said that they were taking every precaution, you know, to prevent COVID, including, I think, three tests right before she left him, he had to do like a temperature check for a week. And so we decided to send her and she actually got on a plane and went with another family to camp. And about a week and a half into camp. I got a text message from one of the directors of the camp saying that, you know, she wasn't feeling well. She had thrown up a couple of days before. And they said that they had given her a couple of COVID tests, and it was negative. They also asked if she had a history of eating disorders because she was restricting her food. So I got, you know, very concerned. And I asked to speak with her on the phone. And I spoke with her on the phone, and I could tell that she really she was sort of slurring her words, she was crying a lot. So I very quickly hung up the phone and FaceTime her. And I noticed that she just she really didn't look well, she had lost some weight, which, you know, it ended up all the information kind of came out later, she had lost about 13 pounds in the matter of a week and a half. And my first reaction was just to tell them to take her to the emergency room. Because, you know, we were so far away. It it's i i Like I didn't know what to do. So the first thing that I could think of was just to have them take her to the emergency room.

Scott Benner 9:42
Can you say a little more about how it felt to be that far from her when she was struggling?

Barbara 9:48
I mean, it was there were so many factors in place. It was so hard. I mean, I think you know, any parent that sends their child to camp whether the camp is you know, a couple hours away or in this case You know, 20 something hours away, if to not be with your child when they're not feeling well is very, it's it's so difficult you just, you know, you hope that they're in good hands. And at the time, we felt like, you know, she had all this stuff going on and she wasn't in good hands. So that was that was really hard. And then, you know, when she finally you know, was was receiving care, I couldn't get a flight. Because you know, remember, it's about six months into the pandemic, so people weren't really flying.

Scott Benner 10:33
Yeah. Well, how far was she from you? Like states away? Or

Barbara 10:38
she was states away. So where, you know, we're in suburban Chicago, and she was in Maine. Wow. So and if you think about that, and she's kind of in rural Maine, so the closest town being Portland, which is still you know, a distance. So it was not easy to get to? And had I driven I mean, it would have taken longer than just waiting until the next day to get a flight.

Scott Benner 11:00
Yeah. Did they try rubbing seafood on her? Were they using all the main tricks? I wonder?

Barbara 11:06
No, you know what, it might have been better than what they were doing? Because, you know, later it turned out that they were giving her Gatorade, because she, you know, she wasn't eating was refusing to eat and vomiting, which I mean, you can only imagine Gatorade to the stage she cannot look at Gatorade

Scott Benner 11:22
was Did that happen at the camp? That happens at the camp? Yeah, well, camp. I mean, counselors are not, you know, they're usually younger. Right?

Barbara 11:31
They are. And, you know, they had it, you know, sort of a strange set of circumstances, because it was COVID. Normally, they get a lot of foreign counselors that are a little bit older. And because people weren't traveling, you know, I guess like with the travel visas and stuff, they ended up with a bunch of younger counselors from the US. And I just felt like, weren't really well trained,

Scott Benner 11:53
well, weren't well equipped for the dogs diagnosed type one diabetes. That wasn't on their to do list either. Plus everyone. You know, when you really look back, everyone has to be freaked out right in the beginning of COVID. And now there's this kid that's super sick. You know, everyone's looking at her going like kids got COVID

Barbara 12:13
100%. I mean, she said she had something like five COVID tests. And you know how unpleasant. I mean, I was very fortunate, I got vaccinated before I needed a COVID test. But they, you know, they the swamp goes all the way up your nose. And my daughter said it felt like she was drowning. And they did five of that.

Scott Benner 12:31
Yeah. Because they wanted to prove she had COVID. So they could put her somewhere and be done with her. And they and they didn't know what to do. And well, that's, you know, I have a tiny bit of a similar, similar situation. I mean, not similar with diabetes, but my son was in Florida playing baseball with his college team. And I was there watching, and he got sick. Like, right as and it wasn't like into COVID. It was like, those couple of weeks. Excuse me, like, you know, when I think mid March is when everyone kind of came to like grips with like, Oh, this is a thing, and I'm gonna go into my house now. So this was like, this was like, the week before that. And it's just rumblings like, you know, you still hear people saying, like, did you hear on the news, there's a thing, I wonder if it's gonna be a problem. Like it was still like that. For most people, and my son gets a viral infection while he's there. So. So luckily, that what he had was treatable with antibiotics. And you know, so I might not have met viral infection. I'm not exactly certain. Obviously, I'm not a medical person, but he got something that was treatable with antibiotics. And but as soon as he got sick, people backed away from him, like he was on fire. I, you know, and then we got the antibiotics into him, and it made him better very quickly. And then you had to basically go from person to person to go listen to antibiotics don't work on viruses. If this was cool, he wouldn't be getting better. And then you're counting on people knowing that that's true. And it was just everybody was at to arm's length from them. At that point. It was very first. Yeah. So I can see that happening for certain to your daughter as well.

Barbara 14:17
Yes. And, you know, there's this added dimension of her being at an all girls camp, and there being some drama. I think, you know, one thing that COVID has sort of done is it's made everybody a little bit, I don't want to say anti social, but you know, these were kids that were basically you know, at home or homeschooled on their devices since March, and all of a sudden, you know, they're away at camp with a bunch of other 10 year old girls. So there was there was definitely an element of girl drama. Um, and they kept, you know, citing girl drama as an example that she was restricting her food. So it was just so many different things at once. It was very overwhelming things

Scott Benner 14:59
started getting confused? Yeah, yeah, they were pointing at one thing and thinking it was something else. And yeah. Did the girls back away from her? Did she experience that?

Barbara 15:09
Yes. Because, you know, she had vomited a couple of times, which is often a sign of DKA. And everybody was so freaked out because that's also a sign of COVID. So there were some girls on the bunk that were kind of taunting her saying that she had COVID. I mean, you know, it was a lot. Yeah,

Scott Benner 15:27
no kidding. That sucks. How long did it take you to get to her day?

Barbara 15:32
So it took we found out so I got the text from the camp director, I want to say around three in the afternoon. And she basically I don't want to throw anybody under the bus. But she said no rush. But of course, you know, as a parent with a child multiple states away during this time, I called immediately. Yeah. By the time they finally got her to the emergency room is about 5pm. And so when I got the call from the emergency room, my husband was simultaneously looking at flights. So the next flight that I could get was 8am. The next morning,

Scott Benner 16:11
were you on your own private plane? Was it that part of COVID?

Barbara 16:15
I wish I could have you know,

Scott Benner 16:17
I don't know. I don't mean, can you afford a private plane? I mean, were there not only people on the flight?

Barbara 16:22
Oh, there was no, there was hardly anybody on the flight. I mean, it was I had like two rows to myself.

Scott Benner 16:29
Yeah, we flew home when I flew home from Florida. I was on a flight on a on a full flight with like nine other people. So like, I mean, like a giant plane with nine other people. We were just spread out as far as we could. People are like laying across three seats. It was the most comfortable I've ever been flying in my entire life.

Barbara 16:48
So funny. And I feel like that just changed very quickly. Now, back to being you know, pre pandemic levels.

Scott Benner 16:55
Yeah, no, I was on a plane. It's June. Now when you and I are talking, I just was on a plane. And it was it was packed. So yeah. But okay, so she goes, they finally you tell them to take her to the emergency room. So is she diagnosed without you there? Alright, this is a super short ad break, just reminding you to go to touched by type one.org. It's a wonderful organization doing things for people with type one diabetes, touched by type one.org. The one is a one like the number one, right so like, touched that's to I'm not gonna spell touched for you. And then by and then type and then the number one.org touched by type one.org. They're also on Instagram and Facebook. And you will spend no better few minutes of your life today than if you check them out. Touched by type one.org touched by type one.or Whoa, whoa. I don't know if I've ever done this on the podcast. But since I mentioned the buy me a coffee link at the beginning of the episode, I want to tell you that I'm sitting right now in an incredibly comfortable, well built and supportive chair that was bought for me pi to people who listened to this podcast. And it changed my life this year. An expensive chair is not something I would have spent money on on my own. Tiny little story here is that at one point on Facebook, someone just kind of got the idea. Like they want to do something nice for me. And that's how this buy me a coffee thing got started. And before I knew it, there was so much money being put into it. I mean, I don't know if it's buy me a coffee. It's just kind of a name. Like, I don't actually drink coffee. I assume you understand that. Anyway, I just was so grateful. And they had this money now. And I didn't know what to do with it. And so I said to people, like I can't just like I don't want to just put this money in my pocket. Like I want to do something for the podcast, I want you guys to get something out of it. And some kind people asked what I needed. And I just said like, you know, a more comfortable supportive chair would be a big deal. My back feels so much better than it used to. I spent a lot of time sitting in this chair, making this podcast for you. Anyway, it's a weird little thing that just never thought would happen in my life. It's odd and nice. And I don't know. You'd have to be in my shoes to know what I'm talking about to see a bunch of people, like hundreds of people come together and say, Scott, I want you to be more comfortable. Take $5 and buy yourself a chair is really like one of the more surprising and lovely things that happened to me this year. Anyway, if you want to do it too. I mean, I'll take your money. Buy me a coffee.com forward slash Juicebox Podcast. It is really just a kind of a superfan thing to do, I guess but it means a lot to me. So thank you very much

Barbara 20:05
She is, and I just I don't want to forget one thing because I think we have, um, oh, yes.

Scott Benner 20:12
No, I'm sorry, whatever you want to say go ahead, go back to what you were thinking we,

Barbara 20:16
we, we have a little bit of an interesting connection. So one of the things that I did after I spoke with her on the phone, so they handed me the phone to speak with her. And I very quickly switched the phone to FaceTime, right, just so I could get a look at her. And once I had a look at her was when I insisted that they take her to the emergency room. Yeah. But this is kind of like, you know, Post story. But um, months later, my husband had a friend that told him that he should write to Tim Cook. And tell him basically, that FaceTime saved our daughter's life.

Scott Benner 20:54
Well, at the very least, it it let you look her in the face. Right. And then there's a lot to be inferred from that.

Barbara 21:01
100% Yeah, I mean, I took a look at our NGBs big dark circles under her eyes. And she just she looked terrible. And she couldn't even sit upright, and she said her stomach hurt. But anyway, I my husband, and I had this little contest where he wrote Tim Cook. And he you know, and I will come as well. But my husband said that his letter was, you know, sort of more concise and to the point. So, I was like, Okay, fine. So my husband sent a letter months later, we don't hear anything. And so I sent my letter. And literally within 24 hours, I got a letter back from Tim Cook, thanking me for my letter, and saying that it's stories like mine, that you know, make them go on and do all the things that they do, but

Scott Benner 21:44
more importantly, approved that your husband's letter suck. That really is the most important part. You know, it's funny. You said a minute ago, you're like, we have this interesting connection. And I was like, Ooh, me and you.

Barbara 22:00
I thought you had some kind of Apple story. I do. Yeah. And I own story. Yeah,

Scott Benner 22:05
yeah, I do. When the first iPhone came out, I mean, the very first iPhone, I got one, back, then you had to stand in, I stood in an alleyway behind a cellphone store for hours to get it, actually, with Adam, who's the doctor who came on and talked about COVID a lot during COVID. He and I just stood behind an iPhone store for a couple of hours and got our phone. Anyway, I was migrating my pictures onto it. And it was super excited. And I know that's hard for people to believe now. But having a handheld device that would hold your photos or the even could have your calendar on it was unheard of at that moment. Like it just didn't exist, like in a real functional visual way. And so my wife was leaving for work one day. And I just stopped her to show her and she's like, I have to go and I'm like, no, no, look at this. And I only held her up for 30 seconds. You know what I mean? Like she she was had to get out the door. And as she drove down our driveway and then pulled onto the street, only a few seconds ahead of her a tree fell across the road, like this big branch from this tree like this giant branch that would have like, easily crushed anyone's car. And I was like, oh my god, I saved your life by showing you my iPhone. And, and I wrote that. Adam, actually I wrote it up in an email and I sent I shared it with a couple of friends. And Adam was like, send it to Apple. And I did. And maybe a few weeks later, I was contacted by a law firm in New York, that wanted me to sign an NDA before they would continue to have conversation with me. So they reached out to me and said, Hi, we'd like to talk to you about something we can't tell you what it is. If you sign an NDA, we'll tell you why we're contacting you. And I was like, I am fascinated. So I did that. And it was apple. So I got flown out to Los Angeles, me and about 30 other people. And we were we made each of us made iPhone story commercials. And I think they picked six of them that actually made it on to television. Mine did not make it onto TV, and I still made like $11,000 I got a week off and got to go make a commercial.

Barbara 24:15
That's amazing.

Scott Benner 24:17
But I don't think I was tall enough. Or I'm not sure exactly what I wasn't enough of. But, but mine didn't make it was still an amazing experience, though. And it was from doing that. I don't know if that stuff if anybody would even remember those. But there was like, like, I'm an airline pilot, and I use my iPhone to check the weather before I get to the airport. Like it was super simple stuff like that, because the phone didn't really do very much. Without apps, like really think about your phone without an app. It's useless. And then there was no app store really. So anyway, that's yeah, that was it. You didn't get to go to Hollywood like I did, though.

Barbara 24:58
No, no, my Sorry, in a very different editing.

Scott Benner 25:02
Just got the mock here has.

Barbara 25:05
Exactly. You know who is gonna write all the letters in the house?

Scott Benner 25:08
Well, I mean, also who's gonna shut their mouth? I would think. So how did she was there someone with her in the hospital for the first hours? Yes to get there.

Barbara 25:21
So. So basically what happened, you know, as I mentioned, it was sort of rural Maine, and there wasn't a major medical center, but because she was clutching her stomach, they thought maybe at the very least, she needed a sonogram. And this one hospital that was near the camp didn't have that kind of technology. So they thought that they were going to transfer her to a bigger Medical Center. But when she arrived at the first emergency room, they did one of the nurses thought to do a finger stick. And when they did a finger stick, they found out that her blood sugar was 600. Well,

Scott Benner 25:57
oh, so then they get her go. And where was she by the time you got to her? What state? No, she

Barbara 26:02
was she was in Maine. She was in Portland. I didn't

Scott Benner 26:05
mean like that. I meant, like, what state was her health in? Sorry, as I, as I said that, I realized that I like that.

Barbara 26:12
So I guess at the time, what the, what the the nurse said to me was that she was she she basically said, you know, we just did a finger stick. And she's in something called DKA, which I actually had to Google. And she explained that, you know, it's often when children get diagnosed with type one diabetes, she explained how high her sugar was. And this was like, you know, like, in those movies, when, you know, people are listening to their doctor, and their doctor tells them that they have cancer, and they just they don't hear anything. So my husband was sitting there while I was on the phone. And I felt like he was sort of googling so we could, you know, figure out what was going on. It was just very overwhelming.

Scott Benner 26:58
Yeah, no kidding. Okay, so she, how long was she in the hospital.

Barbara 27:03
So she was in the hospital for three and a half days. So she was in the ICU for a couple of days, I guess the standard protocol is to very slowly bring the blood sugar down with insulin. And what they basically had to do is, since she had to be transferred from the rural hospital to the major medical center, they had to give her an insulin drip in the ambulance as she was going. And they mentioned to me that there were, you know, slight risks involved, which is, you know, just another thing that and terrified me. And so when I arrived, she was in the ICU.

Scott Benner 27:42
So when when, when she gets cleared to leave the hospital, I'm assuming you're getting right on a plane.

Barbara 27:50
Yes. And that was that was terrifying. Yeah. Because I basically went, you know, they won't allow you to leave the hospital with a child that has type one unless you've gone through the education piece, so that I know how to give her insulin. So I left the hospital with needles with insulin. I mean, it was like I, I had to navigate, you know, having a child that could barely walk because you know, as I mentioned, she lost 13 pounds, she can barely move. And I had all of this stuff with me.

Scott Benner 28:23
I couldn't bring myself to leave the parking garage to make the 30 minute ride back to the house. We were staying in. Like, and we were in the hospital for five days. We were so scared to leave the hospital. We left the hospital, went downstairs, went right into the cafeteria and had lunch, because I think we didn't want to leave the building. Yeah. And it was terrifying. Yeah. And then you had to get on a plane. But did you? Were you in that like ignorance is bliss thing? Did you not know enough about it to be like, like, properly terrified? Were you just terrified of the big like the specter and not of something specific? Well, I

Barbara 28:59
feel like I had two bad options, right? Because I definitely didn't want to leave the hospital. That's for sure. I mean, it was so uncomfortable. And I barely slept. But I definitely felt safer in the hospital. But remember, we're in Maine. And so my other option was to stay in a hotel overnight with her, or get on a plane and at least be home and have the support of my husband. You know, we know some doctors. So it was like it was almost like what's better, you know, so it was terrifying to be on the plane, but I also didn't want to stay overnight with her in a hotel, if that makes sense.

Scott Benner 29:34
Yeah, no, that trust me, that all makes sense. I'm fascinated by that idea that, that you had to be thrust like it wasn't just a quick ride back to the house. Yeah, you know, that that was really something so you made it obviously. Because yeah, you've made it back. Most of your fears, unfounded, did you have any trouble?

Barbara 29:54
Well, so we have this one crazy thing in that airport. So When my daughter got, you know, transferred to the hospital from canopy center with a backpack, and I didn't really think to look in the backpack before we got to the airport. So as I'm taking her through security, and my daughter sort of goes through security first, we find out that one or she has this water bottle that she really likes, and it's filled. So they made me get out of the security line, and go into the water bottle and then come back. And she was already my newly diagnosed type one daughter's all the way on the other side of the metal detector. And I had to leave her so that was a little bit panic inducing.

Scott Benner 30:39
Did it feel see that's interesting for people to understand like you What did you walk away from her 30 feet, and it felt like you were leaving her in another country? Right?

Barbara 30:48
100% I was just terrified. I,

Scott Benner 30:51
I can relate to that idea. Like, I can't walk away from her. Like I have to stand right here in case something happens that that Yeah, I thought you were gonna say that there was like a fishing knife in her bag or something like that, that you guys were up against the wall.

Barbara 31:05
I mean, the irony of the whole thing, it was a filled water bottle. So like I felt like she needed the water all along in camp when she's getting Gatorade and then ends up having to empty it out at the airport.

Scott Benner 31:19
Finally, we've got the right thing in our hands, and we're dumping it away. But that feeling of like even being separated by feet in that situation? Oh, I definitely know what you're talking about. I have had that, like, I have had that exact thought, like I have to be here like right next to her tech. How long did it take for that feeling to go away? Or has it not?

Barbara 31:38
I know, it's gotten better over time. You know, as we've started to give her more and more independence. I mean, she's 11. Now, I kept her remote this year for school, you know, because it was a new condition because of COVID. We just sort of wanted to get a handle on her blood sugar and having her home was the easiest way to do it. So as we've had her home, and we've been able to manage things better, we've started to give her more and more independence. And also, you know, she has a Dexcom. And that's huge. I feel like she can be feet away from me. And I can see what's going on with her blood sugar and texture if I feel like you know, it's going too high or too low. So that's I mean, that's a game changer.

Scott Benner 32:21
I'm really very new to this, though. It's interesting. Yeah. Is it going anywhere near how you hope?

Barbara 32:30
I mean, we're definitely trending in the right direction. The past couple of doctor's appointments, her hemoglobin a one C has been a 6.70. Good for you. Down from 13 when she was initially diagnosed,

Scott Benner 32:44
that's a nice sleep. I know I it's funny, I feel stupid saying this. But did you have like a focus for coming on? Were you did you? I don't remember. I don't really?

Barbara 32:56
Oh, yeah, I think my you know. It was like sort of twofold. Number one, you know, right before we sent her to Cam, she had a full physical. So when she had a full physical, like, we thought everything was fine. And she was perfectly healthy. And we were able to send her halfway across the country. And literally within a week and a half of being gone. She ended up in the ICU. So my husband and I had this moment of, you know, well, something should have been done in the pediatricians office, like there should be this like universal standard of care where they at least to a finger stick, because they don't really take blood work from children. So unless like you see the signs and symptoms of something going wrong, there's no reason for them to even look at blood work. whereas adults, you know, have physicals every year, and they take blood. So I think I was just I feel like, I would love at some point for pediatric practices to adopt this. You know, just like, easy finger sticks, get a baseline, you know, what's going on with the children because it really would have helped us so much.

Scott Benner 34:19
Did you feel like you paid to rotate your tires before a road tripping out a flat tire anyway? And then 100%? Yeah, and then you felt like, Oh, I did everything I could do and they still didn't? Well, I mean, so I'm not going to disagree with you. And but I would say that I think this might be a thing, that if you wait five years and think back on it, you won't feel similarly. I'm not certain and there's no way for me to like, I mean, we could put on our calendars, I guess and reach out to each other. But I think that when you're first going through a diagnosis in the first year or so, it there is that like there are a lot of feelings that are similar What you just brought up like somebody should do something, there should be a way to this whole thing except they think maybe there isn't. You know, I mean, I don't disagree with you that you could fingerstick every kid on the planet, and maybe you'd catch some of them with a high blood sugar. I'm sure you would. But if you look at that, from the perspective of people who never get diabetes, I bet you hear them say, I don't, you know, I don't want you to finger stick my kid. Like, I wonder how much of that like becomes perspective? Because of what happened to you. But I don't disagree. Like I mean, it's an incredibly, I think, at the very least, when kids come in with flu like symptoms, they should check their blood sugar. Yes, you know, for certain, because they're, you're definitely going to catch some kids and keep them from getting, you know, into decay or deeper into it. But I do know how you feel like, is that a, is that a helpless feeling? Like I don't I like to dig into the psychology of it a little bit like this, like, does it make you feel like, nothing's within your control?

Barbara 36:04
It definitely does. But also, I think I think about it a little bit differently, too, because I feel like you know, sometimes, like in the first year of a diagnosis, you have all this kind of fire underneath you. And you feel like that's when like you want to see changes made. Um, and so it keeps me hopeful in a way. Because I feel like maybe at some point, it will be a standard of care, because you're hearing about more and more type one. diagnoses, someone sent me a study recently as related to COVID that they think COVID might trigger type one.

Scott Benner 36:42
So I do I want to be careful when we say that, because I think what you're going to find is that it's not that COVID gives you type one diabetes is it COVID puts your body in a instruct in a stressful situation. You very likely had the markers for type one diabetes already. And this is the thing that yes, propelled it. I know, and to say, and to say COVID triggers type one is, it's like a headline statement. That absolutely is it's, I understand what you're saying it's true. In content.

Barbara 37:13
It doesn't explain that. Yeah. specific mechanism. Yeah, of course. Yeah,

Scott Benner 37:17
yeah, you don't magically get diabetes, when you get COVID, you are a person who has anybody's markers that are making you making it clear that you are going to get diabetes, at some point, something throws you into that situation, could be anything really

Barbara 37:33
100% And you know, the fact that you know, a hemoglobin a one C, you know, it's a measure of your blood sugar over the past three months, the fact that when they did it in the hospital, and hers was 13, and meant that her sugar had been running high, you know, for a month before she ended up at that point. So, you know, there's there's a certain elements of Oh, my goodness, you know, she was complaining about headaches. And we thought, well, she was spending a lot of time on the screens and wasn't wearing her glasses. So you know,

Scott Benner 38:03
no, yeah. Oh, it's the worst. Listen, the first time in your life, especially attached to your children, that you recognize that we're all on a rock, hurtling through space, and nothing, right? Nothing happens for any reason that that you can figure out like, it's a, it's a hard thing to swallow that, you know, your decisions don't lead to ultimate safety, I guess. Yeah, like, you know what I mean, like you, you get what I mean, I was very careful when I was a kid, I grew up really broke. And I looked around, and I thought I have to establish credit. So I remember getting a credit card to Sears and buying something just so I could pay it off. So that I can start building credit was only like 18 years old. Right? And that made me feel safer. And my home makes me feel safe. But the truth is, if like three ill intended people wanted to get into my house right now. They absolutely could. But I feel safe. And you know, I try to get a house in the nicest neighborhood you can so you can feel safe. So you can feel like you're sending your kids to good schools. And it's all true, right? Until, you know, a meteor crashes into you. And then you realize that none of this had anything to do with you. You were just getting lucky the whole time. Right? I mean, and it's a hard pill to swallow. Like as a as a person who cares about another human being and you're trying to keep them healthy and alive. To realize that something random could happen. I heard someone say recently, I was listening to an interview somewhere. And the man had had a near death experience. And he said that what stuck with him most when it was over was that you could be talking to somebody and an hour later they might not be here anymore, and that there's no way to know that's gonna happen or not happen. And that he found it frightening and freeing at the same time. So I don't know it just made me think of that when you when you were saying that because I completely understand the idea of wanting to create as good Have a situation as you possibly can, and yet not losing sight of the fact that, you know, random things happen. And sometimes people are in the way of it. It's, it's terrible. I mean, don't get me wrong, it's that's not how that's not what should happen. But I mean, for me, I always kind of go back to this feeling of, if you could go find me right as I was getting ready to have my first kid, and you and somebody came, I don't know popped out a space in time and said, Look, you know, you're gonna have two children. And, you know, here are all the health issues that are going to happen for your wife, as you get older for you, as you get older, for your son for your daughter, like, you're gonna have a car accident one day, like, you know, all this stuff is going to happen. You can't stop it. I don't know if I even would have believed it. Because when I was young back then I just thought if I make good decisions I'll put are in good positions and will have good outcomes. But, you know, then a girl hits you in the bumper when you're waiting at a stop sign and you realize she's on a different path than you are. And now suddenly, you're in her way. So I don't know. It's a It's frightening. The whole thing? Do you have your other children too?

Barbara 41:12
Yeah, so I have a younger daughter as well. Okay, so an 11 year old and a nine year old.

Scott Benner 41:20
Do you have concerns about diabetes for them?

Barbara 41:22
Well, so um, I think I heard about it on her podcast, but um, T one D exchange. Um, you know, they have a whole database, but they also offer blood tests. So you can test everybody in your family to see if they have the markers for type one as well. Trial net. Oh, try on that. Sorry. Try

Scott Benner 41:44
that. Okay. Listen, pimp everybody out. That's been on the show. That's fine. Thank you. May I will watch

Barbara 41:50
this. We've been on the pod two and we're obsessed. Bob,

Scott Benner 41:54
do you want to see something that you might find creepy, but a little interesting. Watch this. Yeah. If you just go to T one D exchange.org. Forward slash juicebox. Now and you're a US resident who has type one diabetes, or a US resident who's the caregiver of someone for type one, you can join the T Wendy. Registered T one D exchange registered? Well, it's easier when I can edit it, doesn't it? Hold on a second? The you will be asked a few simple questions. None of them are deeper probing. It's 100% HIPAA compliant, completely anonymous. And your answers will help other people living with type one p one the exchange.org forward slash juicebox it's not bad right. Now. I could do those in my sleep. I love the T one D exchange and what they're doing but try on that is where is that? Yeah, yeah, you can get checked for the marker. So you did it for your, for the other?

Barbara 42:45
Yes. So I did it. Um, and then my husband, I think you can for trial that you have to be 45 under so my husband, he's 52. And so he he did it through I think JDRF offered something to I believe we've all tested. I'm sorry.

Scott Benner 43:06
I know. JDRF is like it cost like 50 bucks and trial. It's free or something like that. Right?

Barbara 43:11
Yeah, but trial that you can only do up until age 45. So we all tested and none of us had the antibodies.

Scott Benner 43:18
Oh, that's cool. Now, I think trial net isn't retesting any more if you get no antibodies. But I think that I they used to I wonder if that's not a financial decision on their part because they're, they're funded by other people. Whereas I guess you can always buy it through the JDRF. The one they're doing Yes, yeah. I think trial that might end up being a sponsor at some point. I feel like I remember having a conversation with them a couple of weeks ago.

Barbara 43:50
Well, if you want me to pimp out on the pod, we actually did the free trial through the Juicebox Podcast. Oh, no.

Scott Benner 43:58
Thank you. Did you get the free no obligation demo? Or did you get the free 30 day trial of the Omnipod dash?

Barbara 44:05
We got the free trial of the Omnipod dash?

Scott Benner 44:09
Oh, you did 30 days? Yes. That's cool. Listen, let's just remind everybody that their advertisers, but this isn't an ad, but I want to know how that went. So you contact them, because I talk about all the time, but I've never done it, obviously you contact them, they get you out 30 days worth of pods a PDM. get you all set up and going to get this app to go through your doctor does it just straight does.

Barbara 44:32
It does because I think they want to make sure you know if you're making that kind of a commitment that you'll be able to continue with it. And initially it wasn't covered by our insurance, but we heard so many positive things about it that we said you know, we'll try it. And then honestly, I think we paid for one month out of pocket and then our insurance decided to cover it. So it worked out.

Scott Benner 44:57
Yeah, that's excellent. No wins on the pod.com forward slash choose people support the podcast. What are you doing? I got a I have bills to pay to. So that's really that's really cool. I love on the pot. I mean there Yeah, sponsors because of how I feel about them. I could have, you know, I'm sure I could have gotten an ad from a different insulin pump. But this is the one that I I've seen a ton of benefit from for Arden. And it's been like a real like, like, genuine like, help to us over God over a decade now. So I'm glad that you got it and that you like it. That's very cool. How do you find the podcast?

Barbara 45:38
Um, oh, so I had heard, I initially found the podcast by the woman, I'm going to give her a huge shout out. But she has type one, just the woman who does my eyebrows of benefit. And I had actually, I brought my I had brought my daughter with me. Um, and we noticed that she was wearing a pump. She had the Medtronic pump. And so I like gently talked to my daughter. And I said, look, look, she has a pump. And so then my, my daughter said to her, I have type one too, and they got into a whole conversation. And I feel like I'm just going to get my eyebrows done more often than I needed to because she was such a great resource. But she was initially the one that told me about the podcast.

Scott Benner 46:27
I love hearing how people find out from each other. That's so so interesting to me. And I and I have this visual of your, your, your brows getting thinner and thinner. And you're like, I hate how my brows look now, but this girl knows so much about diabetes.

Barbara 46:43
Actually, the opposite sort of happened. I actually over time told her to do less than less. And it was more like therapy for me just like sitting there and getting all of her tips something because I think she's in her 30s and has diagnosed in her teens

Scott Benner 46:59
that I'm smiling very big. Such a big smile from that. That's, that's very, very cool. Also, if people are interested, Arden gets her brows threaded. not last. So if you have a threading professional around, you should try it. It's fascinating. Really, really cool. Like just I've ever seen anybody do it.

Barbara 47:20
Yeah, I've had it done before. Okay, um, but I think I can never switch because this is like, I mean, I feel like I learned something every time I go see her and my brows look good.

Scott Benner 47:30
So ask you this. I'm gonna admit this on the podcast. The person who cuts my hair is fine. But I don't love what she does. And I want to switch to another person that the place buy feel too bad to do it.

Barbara 47:45
I think that's a tough one. But I you know, it depends how long they've been working in the business because I feel like they ends up developing a thick skin because it must happen all the time. People think

Scott Benner 47:57
there's this guy in there and I just want to see what he's gonna do with my hair. That's all and I find myself thinking, this is gonna sound crazy. I find myself thinking maybe I can figure out what days my person works and get her and get an appointment on a day when she's not there with the other. You know, I don't borrow, generally speaking don't care about stuff like this at all. And this one thing, like even Arden's like, just tried the other person. I'm like, I can't like she's so nice. I don't know. I don't know how to do it. I feel terrible. I just have to do it. Alright. Yeah, I don't know how we got on this. Like how my brain jumped to this, but I think we're talking about gourmet. No, no, no, I know how we got to it. I'm just like, I don't know why I talking about it now and admitting to everybody that I want to switch hairdressers, but I'm scared to hurt someone's feelings. I really want to this guy looks like he would do such a better job. I don't know why. But anyway, it's not a gender thing. He just seems that. I don't know. I have really great hair. Barb is something you don't know about me needs a pro touch. You know what I mean? Anyway, yeah. Well, so how do you think your daughter's doing? Like, a year into it? Are you pretty comfortable? I mean, the numbers sound great. Sounds like you guys are getting a handle on everything. But I mean, how was she doing personally?

Barbara 49:20
So I, you know, she has her good days, on her bad days. You actually had a podcast recently about mood and blood sugar. And we definitely see that with her, you know, because as like, the pump is relatively new for her. And we're constantly you know, adjusting her doses and stuff. And, you know, like, every I feel like, all the stuff happens in a year, like all the freak technology stuff, like, you know, we put the Dexcom and the Dexcom falls off or like we put the pump on and it's a bad site. So, you know, it's like we're still a huge learning curve. And I feel like that definitely affected her, I would say, you know, she's not ready to deal with it yet. Um, and maybe partially like the trauma of the diagnosis. I mean, she's interested, you know, in one on Bolus thing, her and she, you know, she she asked a lot of questions, but I would say, you know, I'm still like her external pancreas. I'm still, you know, I mean most of it.

Scott Benner 50:25
Yeah, that's not gonna end anytime soon. But no, but so when you say she has good days and bad days, what's an example? Is that an example of her feelings? Or is that an example of things going better, so the day goes better?

Barbara 50:40
I think it's full. You know, sometimes like when her blood sugar's and like, great range all day, she'll say to me, Mom, I'm having a great day, I feel great. Um, and then other days, when it's a little bit higher, she'll say, I don't feel so good. I just feel like I have no energy. There's also, you know, a little bit, and a lot of this, you know, I guess happens in the beginning, where, you know, her sister will eat something like, ridiculously sugary, and she'll say, Well, I can't have that, or, you know, you're gonna have to give me so much insulin for this. So like a little bit of resentment toward her sister that doesn't have type one. Um, but we've been able to get her some help, which I think has been huge. I think it's, you know, it's sort of part of the process of going through this. Yeah,

Scott Benner 51:29
she's talking to somebody. Yes. Yeah. That's good.

Barbara 51:33
I mean, part of it is, you know, the whole trauma of how she was diagnosed, that was huge. So it's like, she had that on top of COVID. You know, and then her diagnosis. So it's, you know, there's a lot

Scott Benner 51:47
do you think when you say, resentment towards her sister, do you think it's towards the person? Or do you think it's towards just anybody who can think it's just because that person's there in front of them?

Barbara 51:58
I think it's because she's there in front of her 100%? Yeah.

Scott Benner 52:02
Do you see it translate to other aspects of life? Or is it mostly around food and accessibility to eating when you want those sorts of things?

Barbara 52:14
I think it's mostly related to that, because, you know, it's always funny, you hear these stories about kids that are like tears at home and the teacher say that they're like, complete joys, you know, I think she like rains it in and all the other areas, but when it comes to her sister, that's sort of when it comes out a

Scott Benner 52:32
lot. Yeah. That Do you think that sisters younger? Right? Yes. Do you think she takes any, like, joy in being able to eat something that your daughter can't?

Barbara 52:45
I mean, she's gonna. And, you know, it's my husband. And I feel like we're sort of trying to find our way a little bit. You know, I'm a registered dietician. So I've always kept like, a super healthy household. But I know that I have girls, and I don't want them to have any issues around food. Um, so it's like this fine line between, like, letting her have things once in a while. But I'm not, you know, like, I feel like you do a very good job of this with Arden, like, you know, you say this a lot in your podcast, like, she wants to go to the movies, and she wants to slushy and she wants, you know, and you just figure out exactly how to correct for it. Um, I feel like my husband and I are trying to navigate the fact that, you know, we keep a super healthy household, maybe because I know too much or, you know, whatever it is, um, and then also trying to allow her to have treats and trying to figure out, you know, how to Bolus for that.

Scott Benner 53:43
Yeah, it's so much less about the food, and so much more about access, and not feeling and not feeling like there's something that exists that you are not, you know, quote unquote, allowed to do. Like, I think that's really the most important but like, in the moment, like the blood sugar, or the food or whatever, you know, that comes and goes, but the idea that I have diabetes, and because of that, there's a thing I can't do, that, to me feels like the most dangerous thing to feel like I feel 100%

Barbara 54:17
And I feel like Yes, and I feel like we're trying, you know, I have this very good friend. She's also a registered dietician. And we used to joke that, you know, more than anyone, we're gonna screw our children up, like, you know, we both have daughters, and it's just going to be one of these things. So I've tried to not make it about that, but there's not you know, even if I don't keep it in the house, like we'll still go out, you know, and have treats and stuff like that. So I don't want her to feel like you know, there's something that she can't eat. And I think we made the mistake in the beginning when she first came home from the hospital and I feel like you've talked about this too, where like, you give all these free snacks you know, so they were like she to this date, like cannot look at a string cheese or a hard boiled bed. And I feel like we back down quite a bit from there. I'm just allowing her to have what she wants still trying to keep it healthy. But just figuring out how to Bolus for it,

Scott Benner 55:12
what sounds to me like you're doing a great job. And to be honest, that anything that you've mentioned so far in this time, it's common stuff that happens to everybody. You know, it can feel so like personal and, and foreign. But the truth is that anyone who has, you know, been diagnosed with type one is going to go through most of the things that you've just said, you know, over this entire time, I mean, aside from the main thing in the plane and stuff like that.

Barbara 55:42
Right. And actually, I have another thing to add to going through this time, please. I might have mentioned this in the email to you, but she's also been in a clinical trial.

Scott Benner 55:52
Okay. Yeah. Which one?

Barbara 55:55
So she's in she's been in the clinical trial for two clues about oh, yes,

Scott Benner 56:02
hold on. I just made a note for myself, because I have a strong feeling that this episode is going to be called playing domain.

Barbara 56:08
Because I have I have such a good name for you for the episode.

Scott Benner 56:11
You have your people coming with titles. I go ahead.

Barbara 56:16
Okay, this will make sense in a little bit. But the title should be Bernice the male owl.

Scott Benner 56:24
You're not in charge of the titles.

Barbara 56:29
Good story about this title

Scott Benner 56:31
bar. There's part of me that thinks that it would be funnier if I did not let you tell the story about why you think that's the title. And we just let people wonder why you think Bernice, the male owl would be a good title for the bus. But tell me first about Oh God, here we go. To miss a blob that I get to write to miss. I can't say it to the mob. The blizzard mob? I have. Yeah. Okay. So she was in that trial, or isn't that trial.

Barbara 56:58
She is currently in the trial. And the way that it works with the trial is that they catch kids within the first six weeks of their type one diagnosis to put them in the trial. So basically, we arrived back from Maine, the end of July. And then she started her first two week drug infusion in September. And because of COVID they couldn't do it here in Chicago. So we had to go to Iowa for two weeks.

Scott Benner 57:29
Oh, I didn't know I was gonna get a bonus of you saying Iowa with your Chicago accent. I thought Chicago

Barbara 57:35
New Yorker comes across. Yeah.

Scott Benner 57:39
Yeah. It's really cool. It's a it's an interesting mix. Hey, this is gonna sound crazy. Do you know how to spell to close them off?

Barbara 57:45
Yes. So if TPL I'm actually writing it LIZAM UB. Oh, no. Is it to poison? I have to don't have to Google this.

Scott Benner 58:02
The reason I'm asking is I'm trying to search my site to tell people the episode where they came on and talked about it because super interesting. And you might want to go look, but it's a word. I can never remember how I found it. It's episode four. Yeah, yeah, it's episode 452. So if you're interested in hearing about the trial hearing about why this trial is so interesting. Take a look. It's it's a really cool they one of the I think one of the dogs. Have you heard the episode? Yesterday, the co founder of prevention bio came on and talked about it and what they're hoping to do with it. It's really cool. But you tell me about it. So she gets an infusion of this drug monthly. Is that right?

Barbara 58:49
No. So she gets to so it's an 18 month study. And she gets two infusions that are each 13 days.

Scott Benner 58:58
Okay. I gotcha. Oh, she goes every day for 13 days.

Barbara 59:03
Yes. Wow. And so it was so interesting, because once she got into the trial, they had to inform us that was no, it was no longer being run in Chicago because of COVID. So that we actually had to go to Iowa. For her to have this drug infusion.

Scott Benner 59:25
And you think it was worthwhile? You happy to?

Barbara 59:30
Um, I don't know, time will tell. And actually, I mean, we have we've sort of been very positive about the whole thing, because she's been remote learning the whole year. It made it very easy to go, she could just bring her computer to the hospital every day. And if you're ever going to participate in a clinical trial, like the best time to do it is when the world is shut down. Gotcha. Um, so, I guess, you know, we'll sort of see what happens but they just informed me that, I guess, because they've had such positive results that they've extended the trial and extra six months. So we'll find out in about a year if it worked.

Scott Benner 1:00:10
And so what's the so first of all, is this a blinded? Like, is it possible? You're not getting the drug? Yes. Okay. And but so what is the hope, like, the hope is

Barbara 1:00:23
that she'll need less insulin over time. That, you know, whatever cells she has in her pancreas, so they catch the kids in their honeymoon phase, when there are certain cells in the pancreas that are still producing insulin. And I think it works like, you know, by two mechanisms, either it helps to regenerate some of the cells that have died, or the cells that are still there, it helps to kind of like pump them up so that they still continue to produce insulin.

Scott Benner 1:00:52
It's very, very interesting. Well, I hope you got the drug, and I hope it does. What they're what they're aiming for, for you. That's really something Jade your daughter's a trooper for for doing that, too.

Barbara 1:01:04
Yes. And you know, she has a really good attitude. She said that, even if it's not helping her, which, you know, we're not so sure that she feels like it will help other kids eventually. So, you know,

Scott Benner 1:01:20
that is very sweet of her. thank her. Thank her for me. Yes, I will. Alright, Barb, we're gonna end here. But I don't know. Tell me about the hour, I guess. Let's go. Okay.

Barbara 1:01:31
So, you know, so when she was first diagnosed, I got a lot of advice from people about, you know, like things like, you know, crying a shower, you know, just to kind of find somebody to talk to. And I feel like because she was diagnosed, and then we did this clinical trial, it was kind of like, go, go go. And so I didn't really have time to like, process all of the emotions of it. But so she had her second drug infusion for to play them out in March. And we were back in Iowa. And my husband and my younger daughter came to visit and my younger daughter has this owl. And she said, you know, from when she's three years old, that the owl, it's Bernice, but it's a male owl. She's just for whatever reason, she's always said this. So it's a little joke in our family. Well, when we were on our way, back from Iowa, it was like, we felt kind of like the sense of relief that she was done with, you know, the second round of her transfusion, we get home. And then we realize that my younger daughter has left the owl in the hotel. And so I, I lost it, it was like a year's worth of emotions. Like I just It all came out. And so we call the hotel and I you know, warn my daughter that the owl might not be there because of COVID. You know, like they probably anything that they find in the rooms they have to get rid of. And she's hysterical and hyperventilating, loves this owl has had this Alison, she's three. And I got this really nice young woman at the front desk. And she said that she knows what it's like, you know, to have a lovey, and she will check the rooms and she promises if she finds it, she will send my daughter like is telling you that she will not go to sleep unless I drive back to Iowa and go get the owl. I mean, it was really it was like, I just felt like it was this. It was like the Holy Year. You know, like I'm sure everybody has sort of felt this way the COVID. But it was like COVID, the diagnosis, that clinical trial just kind of everything at once Well anyway, the woman found the owl, and we're getting ready to go on spring break. And she ended up sending the owl to the hotel that we were staying at in Las Vegas, and the owl arrived in a FedEx package. And then my daughter opened owl and just started to cry just completely lost it. But anyway, when I was thinking about the podcast, I was like that just kind of sums up our year like this, you know? Tremendous amounts of emotion and

Scott Benner 1:04:13
yeah, did you feel like did you feel like, I couldn't stop diabetes, and I might not be able to do a lot of things, but I'm not losing this owl. Is that like

Barbara 1:04:22
100%? I mean, you have no idea what links I went to to get the owl like this young girl who worked in the hotel. She was new to the job so she didn't even know how to FedEx him. So my sister said to me, oh, but I'm sure if she's a young girl, she has a Venmo account, just like send her some money and tell her you know you'll get her a FedEx number you know, so I felt like I am going to have this owl sent and that out and I even let them know at the hotel in Las Vegas that they were expecting a FedEx from us.

Scott Benner 1:04:56
Control Stop that Meteor from hitting you Did you Did You got in front of that one? Exactly the whole time you were talking. I just was waiting for you to mention a person. So I could say who? And then it didn't work out. I feel like down like, a stupid joke. Well, I'm I'm glad you got Bernice back. And yeah, but I think that I think that more importantly, right like, it's, it's a good example of how out of control, like diabetes can make you feel like, really that you just did I mean that that became so important. Like, I get that it's important to your daughter. Right. But that, but that that became so, so important, I think is a good example of needing to feel like you're ordering things, you know, you know, something, something's going your way. I'm glad that I'm glad that it went went your way and that your daughter got her owl back. So now I'm assuming she holds it while she's mocking your other daughter with food.

Barbara 1:05:56
It sits in the kitchen.

Scott Benner 1:05:58
Oh, my God, that's something Well, I really appreciate you doing this. Did you? Did you like talking? Did it meet your expectations? I think you were pretty excited to come on. So I didn't work out. Yes.

Barbara 1:06:09
I mean, I really feel like this has been such a great resource for us, like we get excited for when your episodes come out. We've tried a bunch of things that you've discussed, we actually tried, like you had a whole episode on the Warsaw method, which we've tried with my daughter, I feel like it's just made such a huge difference in our lives. So thank you for that.

Scott Benner 1:06:30
You're welcome to you know, I'll say this to you here because your episode will go up so far in the future. I think I can get away with this. But I have a meeting tonight about turning that Warsaw method into an app so that people can just have it on their phone to figure out the fat for the food.

Barbara 1:06:46
Oh, it's amazing. Yeah, I mean, I feel like it takes like, you know, it's like bringing back like, I don't know, math from college or something. You know, it's such like a mental game.

Scott Benner 1:06:58
Try to try to imagine maybe having a little app on your phone that you can just plug in the fat and everything. And it'll just, it'll help you get to that answer. So I'm gonna try. I have an app developer calling me tonight. We're going to try to figure that out. That's amazing. Cool. So well, I am super happy that you did this. And I am glad you found the podcast and that things are going well for you guys. I appreciate you. Please tell your daughter, I really appreciate her doing a trial, like anybody who does trials or are just helping everyone. So it's a really, it's a really big deal because I know it's not easy. And it takes up can take up time some of them so very cool.

Barbara 1:07:38
Thank you so much.

Scott Benner 1:07:48
I want to thank you so much for listening, and remind you to check out touched by type one.org. Find them also on Facebook and Instagram and go see what they're doing and what they're all about touched by type one. I want to thank Barb for coming on the show and sharing her story. Her story. Her story story. I want to thank Barb for coming on the show and let me get a drink. Hold on. I want to thank Barb for coming on the show and sharing her story. There we go. Oh, that was easy, huh? And thank you of course for listening. I'll be back soon with another episode of The Juicebox Podcast.


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