#591 Power Struggle

Cynthia’s daughter is a teen type 1..

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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 0:02
Hey Cynthia, how are you?

Cynthia 0:05
Hello. Good morning. Can you hear me?

Scott Benner 0:07
I can, but you're very squeaky. Why is that?

Cynthia 0:09
Okay? Hold on a minute. I'm actually just pulling into my work parking lot. Okay, because I'm gonna have to go right into work when I finish. So I'm gonna have better. Better service in just a second. That's

Scott Benner 0:23
fine. I'm recording this part, by the way, and it may stay in just so you're aware.

Cynthia 0:29
Okay, I am alright with them. But I'm trying to get my sound better. Am I Am I okay?

Scott Benner 0:35
You're not at the moment.

Unknown Speaker 0:37
Okay. Okay.

Scott Benner 0:39
Are you wearing a headset? I am. Is it Bluetooth? It is. Yeah. It's like it's not going through your car. Right? It's just from the phone to you.

Cynthia 0:52
But I'm wondering if it might be going to my car. I'm literally pulling in my parking lot right now.

Scott Benner 0:57
Take your time. Take your time. I'm having

Unknown Speaker 0:59
fun. We're gonna, we're gonna be okay.

Scott Benner 1:02
I have a ton of I have a ton of energy I haven't recorded in a week. So.

Cynthia 1:07
Oh, excellent. You've had a little bit of a break. Yes,

Scott Benner 1:11
that will either be great for you or horrible for you. We'll find out this.

Cynthia 1:15
Okay, that's right. So I'm parked. So now let me figure out my sound because I do think I'm going through my car. So let me get it on my husband.

Scott Benner 1:23
I appreciate the effort. I really do.

Cynthia 1:27
I know you're pretty picky about your sound.

Scott Benner 1:29
i It sounds like you're arriving an hour early for work so that you can sit in your car and do this and I appreciate that.

Cynthia 1:38
Okay, I am that is exactly thing so that I can do everything. Is that any better.

Scott Benner 1:44
Not only is it amazing, but the transition was kind of magical. And this is episode 591 of the Juicebox Podcast.

On the podcast today, I'll be talking to Cynthia she is the mother of a teenager living with type one diabetes. And while we're speaking to each other, if you would remember that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, I would really appreciate it further. Don't forget that. You should always consult a physician before making any changes to your health care plan or becoming bold with insulin. Have type one diabetes, or care for someone who does? Do you also live in the United States? Well, then I've got a little something for you to do. Head over to t one D exchange.org. Forward slash juicebox and take the survey, help type one diabetes research, help the podcast help other people living with type one, t one D exchange.org. Forward slash juicebox takes less than 10 minutes. It's completely HIPAA compliant and absolutely anonymous. Just one more music swell then we'll get to the program

this show is sponsored today by the glucagon that my daughter carries. G voc hypo pen. Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by the Dexcom G six continuous glucose monitor dexcom.com forward slash juice boxes where you'll learn more and get started. There are links in the show notes and links at Juicebox Podcast comm to these and all of the sponsors.

Cynthia 3:44
So I'm Cynthia, I am the mother of a daughter who was diagnosed with type one at about 15 and a half years old. It's now been three years.

Scott Benner 3:55
Wow. So she out of the house.

Cynthia 3:58
She's not she's actually a really old senior. So she just graduated. Gotcha. Just in the last week.

Scott Benner 4:05
Oh, congratulations. Yeah, congratulations as you shift to spending an enormous amount of money to send her to college someday.

Cynthia 4:13
Exactly. That's right where we're at. So Superfish actually, I think she's actually going to stick around for another year and do the local school. So that'll be good.

Scott Benner 4:23
Excellent. I think that's amazing. I offered my son a large sum of money to go to a local college.

Cynthia 4:28
Right? Yeah, my other children didn't. She's my third. She's my youngest. And so yes, at least in this way. She's saving me a little bit.

Scott Benner 4:38
I don't imagine that people who don't have children, like I know it's, you think like, oh, college is expensive. But that's not it. It's you struggle to get through life, month to month a month. And then suddenly someone lays a bill on top of you. That is, you know, commensurate to your mortgage all you know what I mean? And it's every month there's no extra money coming in and somehow you Make it work where you don't like I don't know how you know where you're taking a ton of loans, right? It's it's a massive stress at the end of your life when your knees start hurting and you're like, Oh, I'm not even gonna make it. There. Yeah, yeah. And then they say, like, what are you gonna go to college for? I don't know, you're like, you don't know. You understand why they say that, but you'd like a little more good feeling when you're you're chucking your money out the window. So exactly. Anyway, are we gonna say her name? And maybe not. We don't have to your daughter? Yes. Yeah. My daughter. Okay. So she's your youngest of three. Are there any other autoimmune issues within the, the, the family,

Cynthia 5:45
not in our immediate family and nobody with type one, but it's sort of as you start looking, we're realizing that there are a lot of autoimmune and extended family. We've got some Crohn's we've got, like, lots of different things. Um, but no type one.

Scott Benner 6:04
You know, when Uncle Billy poops a lot, you don't think that 20 years later, and kids gonna get

Cynthia 6:08
it? Exactly. Right. We're just really

Scott Benner 6:11
go doing Thanksgiving all the time. I don't know. It's just always gone. And then you know, you're 20 years old, bringing your dad home? And who knows, you know, but it really is. I think everybody listening should do that deep dive on their family. I met a man this week while I was away. And he hadn't had this happen. Oh, we had to tell him that my son had a thyroid issue that kind of popped up out of nowhere, and that we gotten it worked out. And it made the man say, Oh, my mom's thyroid. You know, has a has a he's like, I don't know what it's called. She's like, but she takes medicine for her thyroid. And I said, Oh, are there any other autoimmune things in your family? And he goes, and he starts listing a couple things. And he says, I want my wife has celiac. And I thought, Do I tell this guy if he ever has a baby one day, and it pees a lot that he should check for type one? You don't mean? Like I had that? Right? You know? So, tell me a little bit about her diagnosis.

Cynthia 7:15
Um, well, she was sick for a long, long time. So she was a freshman in high school. And she was just going through a lot of feeling sick, and feeling super tired. So we actually had thought she was depressed. Okay. And so we were getting her therapy, she was really struggling in school, she couldn't stay awake, seeking lots of kind of different, not even ever once crossing our mind that maybe her blood sugar was high. And so she'd been to the doctor so many times. And then finally, one weekend did have all those telltale signs. And, you know, I had been doing a lot of googling for many months trying to figure out what was wrong with her. And it was very clear to me this one night, I think it was a Thursday night that I just was like, Okay, we're going to talk to you tomorrow, I'm going to tell him to check her blood sugar. Pretty sure she's got diabetes. So it was sort of a strange relief when she was diagnosed, because it was good to have an answer. And to think, Okay, now we've figured out all of, you know, our problems, and we're now it's going to be fine. And I so we wish that that was the case. But how long

Scott Benner 8:35
did that process take? I would say about six months. And when you suggested therapy to your daughter? Did she say yeah, it's possible I'm depressed? Or did she say I'm not depressed and you just persevered?

Cynthia 8:48
And she did say she didn't think she was depressed. But we honestly her symptoms were very depression. Yeah, like, she couldn't get out of bed. She didn't want to she had no desire to do anything. She was just exhausted all the time. And what's funny is she's an athlete. And she, at that time was competing at a very high level. And she could somehow drag herself to practice and get going. And once she got going, she'd be fine. And so now I realized what was happening is her blood sugar was dropping as she was exercising.

Scott Benner 9:26
Interesting, isn't it?

Cynthia 9:29
And then she would feel good and come home and be okay for a little while. Yeah, and then it would just this cycle would repeat itself.

Scott Benner 9:37
I just had I was struck with the thought just now that my life is odd that people say things about their health and I'm like, oh my god, isn't that interesting? Where I should you know, I don't know why my I'm not horrified by it. I'm just I think that's that's incredible like that. You could use hindsight like that and look back and from where you came and her age, right? Like, are you depressed? Well, I don't know. I am tired. More often than usual, I've heard people say it's hard to get up when you're depressed. She right she doesn't know the difference. And right. And would she even know if she? You don't? I mean, if she was depressed, would she know she was depressed? And Correct? Yes. And even, that's really fascinating. And the therapist never said, Well, you know, while we're doing this, maybe go get a CBC or something like that, just to see if she's ill.

Cynthia 10:23
You know, we actually had only gone to one therapy session, I think, at that time, and she just didn't feel like we hadn't found it. She's gone to more therapy since then, believe me, but, um, but at the time, she hadn't found a good fit. So she'd gone to somebody and it didn't really go well. So we kind of were, you know, doing other things. And

Scott Benner 10:43
yeah, well, you went to a mechanic and asked him how to bake a cake. So

Cynthia 10:47
right, right. Yeah, exactly. So and I mean, we in that time, also, we brought her to the doctor, probably three different times, they diagnosed her with sinus infection and ear infection. And we're like, none of that makes sense.

Scott Benner 11:00
I want to give you a lot of props for persevering behind the scenes, because I know what that feels like. And I'd like you to tell me a little bit about how it was for you that feeling that there was something wrong, you aren't coming up with an answer. And I'm imagining every free moment of your life you were digging everywhere you could on the internet trying to figure it out. Absolutely. Scary. Or

Cynthia 11:24
yeah, I mean, to be honest with you, I I was thinking the worst in some ways. You she was a different person from who she had been. And also had become mean her moods where she was having horrible mood swings. So you know, you think typical teenager, but she was my third teenager. It wasn't typical. It was, it was unusual.

Scott Benner 11:49
How far into those? I'm sorry, go off.

Cynthia 11:53
No, go ahead.

Scott Benner 11:54
I was gonna ask how far into those six months till you started thinking physical and not mental.

Cynthia 12:02
I mean, I think we were actually looking for physical more towards the beginning and then thinking okay, well, maybe if there's nothing physical to explain it, it is something more like a depression or something like that. And then swinging kind of just swinging back and forth, just looking anywhere we can try and figure out and in the end, I mean, when she finally was diagnosed, her blood sugar was like 400 out that that's I mean, that's extremely high but and her a one C was in the low twelves.

Scott Benner 12:32
Okay, had been going on. She wasn't

Cynthia 12:35
she wasn't it been going on a long time, but it wasn't and she was never in decay. Like our doctors told us we probably actually found it pretty early.

Scott Benner 12:46
And the running around kept you kind of in the game, so to speak.

Cynthia 12:50
I think the fact that she was so active physically was really what prolonged it.

Scott Benner 12:56
Wow. Wow, some good luck. Yeah, right. I'm just gonna go right once in a while, I guess. You guess I know. It's, it's tough. When you're looking for those silver linings and so many clouds. You find one you're like, this isn't a huge one, but I'm gonna take it as a win. Right? Well, okay, so she gets back. You know, you figure it out. Sounds like you got ahead of it a little bit. And they treat. How, like, are you in? Doesn't sound like you might have been in the hospital for a long?

Cynthia 13:25
No, we were we did do three days in the hospital. And that was a big bummer. But like I said, it was sort of a relief that we knew what was wrong. And we're thinking, Okay, we got her on insulin, everything's gonna be okay now. And let's see, they we did leave with pens. And we had her on a Dexcom. Within weeks, maybe three weeks. G six had just come out. So we were one of the first people to get ge six.

Scott Benner 13:56
Was that through? You're looking into it or through the doctors? Absolutely.

Cynthia 14:00
100% It was from us.

Scott Benner 14:04
And that seemed more important than a pump to you initially. Yes. Can you remember back to why?

Cynthia 14:14
Um, I, her insulin needs were very low at the beginning. In fact, she had she probably went through that whole summer. She was diagnosed in May. She probably went through that whole summer with just taking long acting.

Scott Benner 14:29
Okay. I see. Yeah. So there was still a honeymoon period that went for a while

Cynthia 14:33
for sure. Exactly. And again, because and that summer, she was very, very active. She was in sports camps all day. So yeah, I just think so she was really only taking a couple of units of I think she was taking love Amira at the time.

Scott Benner 14:49
But to dig into that question a little more, not knowing very much about diabetes at all. Seeing what you saw in the beginning when you realize there was a thing she could wear That would pump her insulin in and stop her from taking injections. And a thing that she could wear that would show you her blood sugar in real time. Do you remember what made you think? Let's get the CGM right now.

Cynthia 15:11
Um, I mean yeah, just that knowledge and I guess fear the fear of going low she did within you they sent her home on let's see love a mirror and homologue and of course I went back to work and then she's home like the next, like one or two days after she had come home and she ate something and she did all the math right you know, she's just 15 and a half and did her injection and ate and then tested this before she got the Dexcom and she was in the 40s She sent me a picture of this, you know of her CGM. It wasn't a CGM. What are they called? The pure meter? Yeah. And she's sitting there trying to unwrap Starburst and eat her three Starburst, which is what they had recommended to her and it was a really scary time. And so I think having that although we had ordered the Dexcom even before we left the hospital, but that she had a few scary loads in the beginning that I think she maybe didn't even need the human log yet.

Scott Benner 16:18
Yeah, I in that moment when she's unwrapping isn't it funny by the way kids at this age like she sent you a picture? Like she could have raised you my blood sugar's 40 Like no, you know, I see I hear posts with images get more

Cynthia 16:32
right? Yes, she sent me a picture of the meter Yes. Did you and I'm at work and see this pop up on my phone and have an absolute panic attack. Home his work? I was about probably 20 minutes you didn't

Scott Benner 16:47
make you feel like running out the door or what did you

Cynthia 16:50
I think by the time I saw it, she I think I saw it as well as some other texts that she was okay by then. So

Scott Benner 16:58
good, good. Good. I I've had I one time, couldn't get a hold of Arden at school. And I made it all the way through the front door of the school. Okay, and then she texted me back and she's like, I took care of it and I looked the lady in the face like through the little window you know the post 911 getting into a public schools different than right you know, so I'm looking through the little window and I'm like, Ah, nevermind and I turned around just left okay. But I had made it all the way from a shower. I was in the shower and shower dried ran out the door probably half dressed driving through town. And then arms like I'm good. Okay, and then I just took her on the left but it's yeah, I've

Cynthia 17:42
definitely done that before as well. Yeah,

Scott Benner 17:45
it's frightening sometimes. Well frightening. So you said a second ago that she's done way more therapy since then. So was it not like a brochure transition into type one diabetes?

Cynthia 18:00
Yeah, not really. She's definitely struggled and you know, knowing her I don't know if it was just 100% the diabetes but it that's definitely been a part of of her mental health struggle.

Scott Benner 18:18
Yeah. Does the struggle come? Like what what form does that come in? Is it pushing back against type one is that like, is it like, I don't want this and you can't you can't bring yourself to just kind of say alright, I have diabetes. Is it that she feels different? You know what? What the underpin? I think

Cynthia 18:37
it's all of that that you just said yeah, she doesn't want to feel different. She I mean yeah, she you know she wears her diabetes tech showing and all her friends she doesn't hide it. But she doesn't want to take care of it. And then yeah, just this feeling of wanting to be free and grow up and I think she feels a definite well I know she feels very smothered by me trying to take care of it

Scott Benner 19:07
doesn't want to take care of it and does anyway or doesn't and it's a problem. Je voc hypo pen has no visible needle, and it's the first premixed auto injector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is G voc hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G voc glucagon.com Ford slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk.

Now it's time to talk about the Dexcom G six continuous glucose monitor. If you told me I could only tell you one thing about it, I guess I would say that the Dexcom tells you the speed and direction of your blood sugar. That if I can only tell you one thing about it, that's what I would tell you. I would think that would be enough for you to be interested in more that it also tells you what your blood sugar is. No, that seems like a bonus to me. But direction speed. Yeah, that's the big deal right there. For instance, my daughter's blood sugar's 104. Right now, we are about two hours past a meal at a bar, like a restaurant bar. You know, you're like, Oh, this guy's taking this underage daughter robot. I'm not it's not a bar. It's a restaurant that has a you know what I mean? She got bar food. She had nachos with like cheese steak piled on top of it and french fries. And Arden's blood sugar is 104. At the moment, it is also trending down. I can see that on my cell phone. She's not even with me right now. So I look at the graph over the last couple of hours. And I see where we came in, where we Pre-Bolus for Ardens meal. I can see later where the Bolus got a little overwhelmed, we had it up a little bit. That information from the Dexcom allowed me to comfortably make a new Bolus, which stopped a spike. And now she's leveled off and coming back down gently. I honestly don't know how I could have done that. Without the Dexcom GS six, I think you should check it out@dexcom.com forward slash juicebox. You can find out more or get started today. But I'm just going to tell you, if you have type one. Now forget type one, if you're using insulin, you should have a Dexcom Dexcom share and follow are available for iPhone and Android. And you can have up to 10 followers. That could be your mother, your brother, your sister, your school nurse your parents, a lot of different people could be in your corner if you want them to. And if you don't want that, you don't have to do that. Dexcom is nothing if it is not flexible. Okay, there's links in the show notes, links at Juicebox Podcast comm I want to get back to Cynthia

Cynthia 22:27
doesn't want to take care of and kind of does anyway, which may just be because she so doesn't want to deal with me. It's easier to just take care of it. And then have your mom nagging you constantly to take care of

Scott Benner 22:44
Cynthia going with the old battleaxe version of

Cynthia 22:49
right. I mean, we've tried it all. I've tried the bribery I've tried. You know, I'll pay you to do the whatever

Scott Benner 22:58
disguise about her health like understanding what comes if you don't manage?

Cynthia 23:03
Right, I mean, she's been told that I think you can't really tell them that too many times, because then it just kind of becomes

Scott Benner 23:11
self fulfilling.

Cynthia 23:12
Yeah. So I mean, I will say so I think the the original reason I had emailed you just saying that I thought this was sort of an interesting topic is. So at the doctor, she is always applauded and looked up to as this amazing type one. I think she's a patient that comes in and they're happy to see her and they they applaud her a one sees and they tell her she's doing amazing. And that's just been kind of my biggest frustration is because I'm sure she is doing better than a lot of their patients. But how but it's frustrating to me that there's so many little tiny things she could be doing better. And, you know, when they're 16. And they say, Well, the doctor says I'm doing great mom, they don't want to listen to me. I gotcha. All right. That's how you could do better.

Scott Benner 24:13
Let's find out if you're crazy. Or if she's young, this will be fun. I mean, crazy, in the most lovely sense of the word. So you know, of course, of course. So tell me hurry one see just so we have context.

Cynthia 24:31
So it was in the twelves when she was diagnosed and then it went to nine, you know, like a month later, but ever since then it has always been in the sevens.

Scott Benner 24:39
Okay. All right. So is this a scenario where you're seeing other people doing numbers lower than that? And you think we can get to this, but she won't listen?

Cynthia 24:55
Yes. Ah, she's just so close.

Unknown Speaker 25:00
What What holds your backing? Um,

Cynthia 25:04
well, it's mostly just so she does a roller coaster, major, major roller coaster. She has very high highs and then she

Scott Benner 25:12
has low lows. She's not Pre-Bolus singer meals,

Cynthia 25:15
she does not prefer refuses to Pre-Bolus. So that was one thing that I had a very hard conversation in the endos office one time because I thought, Okay, I'm gonna all bring it up. And then of course, the endo will back me up on it. No, not all of it. Then she didn't. And I so I said, because I think her agency had gone up just a couple ticks, I think it had gone up to like 7.9, almost to eight. And so I had suggested, and I usually let the appointment be driven by my daughter and the Endo. And I just sort of been there because that's how it needs to be. I mean, she was older when she was diagnosed, she really has to take control of this herself, but and so I had just said, what if she takes her insulin earlier? Would that be helpful, so she doesn't go so high? And the endo very quickly said, Oh, I'm happy as long as she just takes it before the first bite of food goes in her mouth.

Scott Benner 26:14
And did you say you mother?

Cynthia 26:19
There's your first belief of the day?

Scott Benner 26:21
Yeah, this to you like you son of a bitch. Just shut up.

Cynthia 26:26
I wanted to so I very quickly said and what if the thing she's eating is a doughnut or a fast acting carb. And she said as long as she takes it before her first bite. So that was really frustrating. Because, you know, I had been trying to get across the concept of Pre-Bolus sing to her. And then the doctor just sort of almost made me look like the idiot.

Scott Benner 26:57
Doctor. younger or older than 40.

Cynthia 27:02
Younger. Really one of the reasons we chose her. Yeah.

Scott Benner 27:06
Does the doctor have type one? I'm gonna go right. I see. Did you meet resistance in the car afterwards? Or your daughter was like, Haha, I told you Did you get any that?

Cynthia 27:22
Maybe not right away there? Yes. Definitely a few times since the she always says the doctor says that I don't have to take insulin until I eat. And then I often have to say yes, but she should be you should take it when you eat and not an hour after you eat when you're high.

Scott Benner 27:40
So I have to tell you, let me just I'm not speaking to your doctor directly. But let's just anyone that's listening. If you are doing this shame on you. Seriously, like really like to tell a 16 year old kid that her eight a one see that, you know, is is almost eight coming from seven and you're doing great. I mean, doing great. What does that mean? Like those kids have no context for that. You've just given her a pass for everything. Everything you just you've told her Gee, it's your point earlier, everything's fine. Don't worry about anything. You can ignore your mom, you can ignore everything you're doing great. Right? That's, it's dangerous. And it's, uh, it's malpractice, in my opinion, and you should be ashamed. And if you don't understand how insulin works, maybe find out or get a different job. You know, right. Don't Don't tell a kid that they can. They can eat a doughnut as their bolusing. And everything's gonna be great. You're gonna be fine. Yeah, you can tell them they can eat a doughnut while they're Bolus thing and their budget is just gonna get incredibly high, and then likely crashed down low later. But and you know, it's not going to kill you today. That'd be that'd be honest. Right, but not great. That's a I'm sorry. So how do you? Well, I'm about to ask you a question. I guess you don't have an answer to both. Do you have a plan for getting through this? Getting through to her, I guess.

Cynthia 29:06
Yeah. I mean, I guess we just keep trying. And we do just the last week she did put a pump on. So she's had the Omni pod and she's just collected dust for a long time, but she did decide to give it a try. And it seems like that's going a little bit better.

Scott Benner 29:28
Huh? Alright, so walk us through it. How did you approach her about it? What happened next, etc.

Cynthia 29:35
Um, she just had had a series of really low lows and because she would go high and then overcorrect to do her range Bolus. And then go way way low and so she had finally agreed that maybe that would be a better way to try and avoid all these lows. So um, It's been a little bit better, I still don't know that she's Pre-Bolus thing, but for whatever reason her body does react faster to insulin coming from the pump than it does when she was MDI, okay.

Scott Benner 30:12
That's good, but not good enough, right, like in your mind, right. Yeah. Right. And you know what the the shame of it is, is that in her mind at some point in the future, she'll agree with you. But how long will it take her to get to that point?

Cynthia 30:26
That's what I worry about? Because I agree. I do think that she will. I think she will get there. But I do worry about how many years it's going to take her to get there. And then I worry about our relationship.

Scott Benner 30:39
Yeah. Well say more about that. What are your concerns?

Cynthia 30:45
Well, just that. I mean, we get along great. So our main, our main issues that we ever have, are always over diabetes. And so you know, that she thinks I'm trying to control her. And you know, I mean, it's just difficult. And then when she me, she's been MDI all these years. And so for many, many years, the first or not many, many, the first two years, probably about till she turned 18. We just every night 10pm, we wouldn't give her her long acting. And then when she turned 18, she's like, I'm gonna do this myself. And we're like, Okay, that's great. You know, she needs to do it at some point. But then turns out as many nights that she was doing it, she also wasn't doing it. So she just would forget are.

Scott Benner 31:38
Cynthia, are you saying that 18 year olds aren't incredibly responsible? I am definitely saying that. Yeah, I didn't know you were gonna come out with such a strong stance today. That's amazing. I know, a lot of you believe it's gonna cause an uproar. Yeah. Well, I like the idea of, I'm going to take care of it. But if I had to watch from a from a from a third party perspective, what I would think was, she used her birthday. As an adult, I made air quotes to tell you to you have to leave her alone now.

Cynthia 32:10
Right. Yeah. Yeah, I think that's exactly what she was trying to do. But my thing is, is, this is not some this is a non negotiable to me is, you know, this is not something that I'm going to give you space on. Is your health

Scott Benner 32:24
Do you struggle with thinking that if you push too hard, she'll just move out?

Cynthia 32:32
At this point, because she really doesn't have the means to move out. So

Scott Benner 32:38
don't let her meet like somebody that has an apartment, right?

Cynthia 32:41
Yeah. Right. No, I guess I do. Yeah, that is a little bit of a concern. Yeah.

Scott Benner 32:47
I had one of those thoughts with my son once like he, he he did something and I needed to do something back and I thought, how far can I push this before? He might just go, you know, well, Forget it then. And that was crazy. Because I thought, Well, I do have to still pay for college. There's no way he's gonna want to do that. So I have a little more time. I don't know if that sounds sinister to people who don't have children. But you know, there's a, that's a real thing that happened to you. I turned 18 Almond adult, which is such an arbitrary bowl thing. It's not real. It's like, it's like you turned 21. And now suddenly, you can you can binge drink, and it'll be okay. Like, but you know what I mean? So, things like that don't happen overnight. I just I feel for you. And I wonder away from diabetes. Do you have any issues like this with with communication or power cycles?

Cynthia 33:41
Um, I don't think anything more than a typical. Yeah. You know, typical teenage power kid turning 18 Of course, you know, they always think that they then should be allowed to do everything and anything but, um, but yeah, definitely, our main struggles are surrounding diabetes, which is very frustrating. Because to me, you know, this is just, again, it's a non negotiable, it's you, you have to take care of your health. Like, I will do everything that I can to make sure that you don't have any long term problems, because I didn't, because I just let you not take your insulin at night.

Scott Benner 34:25
Yeah, no, I appreciate that. I agree with you. I wonder too. Have you gone to wherever and said, Look, I don't push you around on anything else, like you don't see me trying to exert like this is important in a way that maybe you can't appreciate at the moment. And you know, just look on other things. You have freedom here and here and here. I don't like you know, we're not telling you what to do all over your life. If if this feels like that to you. Instead of thinking I'm trying to be in charge of it. Why don't you like help look at you know, can you look at it from my perspective. Did you know but I don't know how well those conversations go. You know, I've, I've lately been talking a lot to Erica and you guys here on the podcast. By the time this comes out, you'll have heard like, another therapist who has type one who I've been talking about more of this kind of emotional stuff with. And it's all amazing when you hear it, like the ideas and the concepts of communication and everything, but I don't know how well it ever really works in practice, like in real life, you don't even mean like it right. Sounds good on don't don't implementing

Cynthia 35:35
Yeah, implementing those things. And you know, she has gone to some therapies and I given some tools and different things and implementing them or is way harder than it seems like it would be reading about them listening to them. It all just sounds so great. Like, that'll work so fabulous.

Scott Benner 35:55
Don't it seems like as being a decent person is not the most human trait. Decent the right word, but like communicating with people? Well, it's obvious, right? Like, I think it's obvious to most people, and then doing it in the moment is, it's not the same thing. There's something else at play that keeps you from saying things the way you even mean them sometimes or

Cynthia 36:19
right. And I feel like with this, there's so much emotion involved as well.

Scott Benner 36:25
Right? Right. And, and everything. I was saying this to my daughter's friends come over, and they get the weirdest conversations in my kitchen. But we were talking about like, all the big, you know, people in their 1617, they talk about the big ideas in the world as if they've just, you know, they're the first people, it's noticed them. And it's a fun time to talk to people. And they were talking about race and politics and these big ideas. And I stopped them and I said, Listen, everything's about power. Everything is about power. Somebody either is in power and trying to hold on to it. Or someone is out of power, and wants to be in power. And that is true in personal relationships as well. Like somebody is empowered in a relationship and everything is a power struggle. So and for children. It's, it's I mean, it's it's normal and obvious, right? Like, you try to assert yourself a little bit. You're trying to break away from your parents, you start seeing, I don't know about you, Cynthia, but I'm slowing down a step. You know, my kids say it, they're like, oh, this old man. Yeah, he's on his way out, like I got better ideas. And, you know, they start thinking, Well, let me get my ideas into the game a little bit. But he's holding the purse strings or you know, whatever else it ends up being. So you try to give them a ton of freedom. And in a normal growth situation, and people can raise their kids any way they want. But I'm a fan, like, let them exert themselves, let them try to insert their ideas. Sometimes it's really painful. As a parent, like, oh, gosh, like that might be right. You don't I mean, like, wow, he might be smarter than me on this one. And to let that go is, is hard sometimes. But then this happens. And it's health. And that you don't have you don't feel like you have the time to let them learn how to be a human being and what's it really going to take? Let's be honest. 26 Is that about when you start to pull it together? You think your mid 20s?

Cynthia 38:22
Wavy? Yeah, my oldest is around that. Yeah. And she's well, she's a different whole different breed. She's very responsible, but we often joke even with her that it should have been her that got diabetes.

Scott Benner 38:35
She enjoys that job very much. Yeah.

Cynthia 38:38
It's funny because she actually she sees it she she just you know, every personality is different. But she's a very science minded, very analytical, I think, you know, somebody would tell her, this is what you do, and she would do it. And and I think she would also be very she's very goal oriented. I think she'd be very driven to like, get that a one C down. Like that would be

Scott Benner 39:00
it would be interesting to her. Do you find that? Do you listen to the show? I'm sorry?

Cynthia 39:05
I do. Yes. And I found it very early, like before we left the hospital,

Scott Benner 39:09
okay. I only asked because you talk to adults, and they fall into those camps. Like some of them are just like what I've diabetes, watch me knock this down. Like I knock everything else down. Like are there right it'll type A about things, which doesn't always lend to great outcomes because sometimes you can't. He can't really absorb the art part of diabetes then when you're trying to write strictly Yes. But so your youngest who has type one? What's her makeup? Is she kind of free spirited or is she Yes, She's

Cynthia 39:44
witty. She's definitely my free spirit. Yes. And yeah, she doesn't want to she wants to be a little be different.

Scott Benner 39:53
Yeah, I don't know how you explain to a person that when they're at that age, and they have that desire that you can't be different if you're not here or healthy. Right, you know, right. And it's so it's such an easy I don't mean easy, but it's so available. Like the health with type one. You know what I mean? Like for, for most people, and I think Pre-Bolus Singh puts her in the low sixes.

Cynthia 40:20
I 100% agree. And I think that's my biggest frustration and she gets so you know, I always okay, dinner's gonna be ready in 20 minutes. It's probably about 50 carbs. You know, I always provide that information. But then from there, I mean, I really, I can't do much else. Yeah, it feels it feels a little helpless. You can't

Scott Benner 40:43
do much else because what would happen if you want what kind of pump the show?

Cynthia 40:49
She's on the Omni pod. And she's literally only been on it for like four days. Oh, she was MTI until I think. I think she's even just on her very second. Oh, so yeah, four days.

Scott Benner 41:00
Oh, so you couldn't walk up to her? And just like a sticker with a needle. Alright, that makes sense. But I mean, what would stop you from walking out into the living room next time and going 50 carbs and pushing the buttons while you're saying it and go boom, and then put it down next to her and then watch her have a better outcome with her meal?

Cynthia 41:17
Yeah, that would that would turn into a big power struggle. Like you're very upset with me that she would say this is my body. This is my health. This is you know, this is a me problem. Not a weed problem. That's one of her favorite lines.

Scott Benner 41:32
Oh, did she hear that somewhere?

Cynthia 41:35
Probably at therapy.

Scott Benner 41:38
Tell her that. Shut the hell up problem.

Cynthia 41:40
And, like I paid for that therapy. Love sleeping

Scott Benner 41:43
under a blanket. I don't think about it often. But you know, a comforter cost $100 I just wanted to bring that up. Let me explain to you how I made that. $100. Right. Yeah, it's it's a me problem. Oh, you just need your up.

Cynthia 41:59
Yeah. So it would it would turn into a power struggle, and it would just it would just be a fight. Have you? So

Scott Benner 42:07
can I ask are the other two? boys or girls?

Cynthia 42:13
Girl boy girl,

Scott Benner 42:14
and you're more west coast. Is that right?

Cynthia 42:17
Yes, we're Arizona. Okay.

Scott Benner 42:19
So you don't have to do you not have it in you to go? Shut the hell up?

Cynthia 42:26
Um, no, I've done that plenty of times.

Scott Benner 42:29
Right. And not and it doesn't get does it escalate like this? They're yelling after that. Does it turn

Cynthia 42:36
yelling and yelling?

Scott Benner 42:40
Oh, yeah. Everyone listening is like, oh, yeah, there's been yo, right. Right. But you know, it doesn't go like UFC. Like you guys don't start like round picking each other. Right? So it just it stays. Yeah.

Cynthia 42:53
It might just turn into her, you know, then just not coming to dinner and just Yeah.

Scott Benner 43:00
Oh, it turns into like a Oh, I was gonna say pouting. That's wrong. Well,

Cynthia 43:05
yeah. I don't know if pouting is right. But I mean, there have been times where yes, we have successfully seen the magic of a Pre-Bolus. And I don't I don't know why she doesn't.

Scott Benner 43:19
What's the bounce like in her blood sugar. Just keep doing it. Because variability what the variability is super important. Obviously, you don't have it, right. Like the standard deviation and stuff like that. You're bouncing up. She's bouncing up and down. Is it possible? She feels like is there possible some of this emotion stuff is coming from blood sugar fluctuation?

Cynthia 43:37
I probably yes. So like her her three days. So since she's been wearing the, the pump standard deviation is 49. So I mean, that's not great, right? But, um, but if I go more out to 60 days, we're looking at 70.

Scott Benner 43:55
Oh, no, no, we don't want that. Right. Baba Baba. Overnight. Oh, do you even get to inspect your blood sugar and make suggestions?

Cynthia 44:06
Yes. So we do she does let us follow her on Dexcom. She does let us manage her overnight. Okay, so

Scott Benner 44:17
let me stop you for a second. Does she allow you? Does she allow you to stay up overnight and not sleep while she's sleeping? Oh my god, it's really.

Cynthia 44:27
So yeah,

Scott Benner 44:28
I guess that's a you problem.

Cynthia 44:30
Right? That's an easy problem. She would tell me I don't have to. And I really and she in fact, if I ever were to say, you know, I lost a lot of sleep last night trying to manage your blood sugar. She would say you don't have to. I'm fine. Just leave it alone.

Scott Benner 44:45
She doesn't understand that all.

Cynthia 44:47
She just doesn't get it. And I you know, I have to remember that her brain is not fully formed.

Unknown Speaker 44:54
Right. So but yeah,

Cynthia 44:56
I think I think that's how her her agency has stayed in the center. Because I manage her overnight.

Scott Benner 45:02
Oh, oh, I bet you're right. Because I think that's the first place to steal a one C is over, right? Yeah, absolutely. Well, so where does she sits? Does she sits stable overnight? Or storage? Does that lack of Pre-Bolus and get a meal time? Just make that a mess into the 2am? Hour?

Cynthia 45:19
Well, boy, these last four days with that Omnipod she's been awfully stable overnight. Good, good, good. So that has helped for sure. But, um, I would say normally, and when she was MDI, I would have to do a correction in the night to keep to give like, we couldn't seem to ever find that magic number with the long acting insulin to keep her stable. So I'm not sure what, I don't know if it's just the formulation of the insulin, but it seems like we could never get it high enough to keep her level.

Scott Benner 45:55
I see. Are you going to work on? Like, where? Where has she been stable these last few nights that like, get a number?

Cynthia 46:02
Well, right now she's 73. Look at you. But most of the night she was and she's about to get up which is probably good. I mean, she's 73. But she's very steady right now. But she spent most of the night in the 90s.

Scott Benner 46:16
Nice. I like that. Now she'll get up and and what about her eating? Is she like, what kind of foods that she gravitate towards?

Cynthia 46:26
Carbs? Yeah. Yeah, she's definitely a typical teenager. And you know, he eats a lot of fast food and you know, likes those sugary coffee drinks that just kill me. I don't like those at all. I don't like she can drink them. Yeah,

Scott Benner 46:45
I've never drank them, but I don't like the way they smell. Oh, I don't I've never had coffee in my life ever wants. Okay, so

Cynthia 46:54
I love the smell of coffee. But I'm not a coffee drinker either. But then

Scott Benner 46:57
you start sweetening it up and putting like syrup in it and stuff. And I'm like,

Cynthia 47:01
great. She's basically drinking a milkshake when she goes to get these drinks. And I'm like, it just kills me again that she won't Pre-Bolus for them. She does Bolus for them. I mean, she does cover for them. But

Scott Benner 47:12
so these drinks are paid for by you

Cynthia 47:15
know, I would never pay for something like get a job. She does have she does a lot of kind of side jobs. And she didn't she worked at Target for a while. Yeah, she said some jobs.

Scott Benner 47:28
Yeah, it's tougher when they

Cynthia 47:30
have Yeah, cuz I would never pay for that. I won't buy things like that for the house. Right? I mean, we don't, I don't necessarily. I'm not against carbs. But I won't have those types of things that are going to spike her blood sugar excessively in the house, because if she would deal with them, I would be happy to buy her cereal. If she was gonna cover for it correctly.

Scott Benner 47:56
Cynthia, not a very common sense person. But am I missing something? Or is this just really like, she is her age? You think?

Cynthia 48:05
I really believe it is her age? And? Um, yeah, I mean, you talk to a lot of people that will say in my teenage years, I was so horribly managed, right. And I just think I'm going through it. And maybe it was when she was diagnosed, because they did. And we encouraged it for her to really just right away, take it and it be hers. And

Scott Benner 48:33
it's hard, though. I mean, it is hard, because there's the other side of it right is if you encourage her to take care of it. And she takes care of it. And then she goes to the end, and then it goes, Oh, my God, you're doing great. Then she thinks I took care of it.

Cynthia 48:46
And if that is that is my major frustration, right?

Scott Benner 48:50
Because had you stepped in first, you could have set a baseline for expectation. That's right. That's where the doctor would have said, Oh, my God, you're doing great. And then that would have been isn't that crazy? And then that would have been held as the expectation.

Cynthia 49:03
I think that's exactly where we went wrong. And now there's no going back from that until I think and again. I do think she's going to eventually get it. Um, she's a really smart girl. But I just think again, she's like, Mom, the doctor says I'm doing great.

Scott Benner 49:21
Yeah, the doctors the rate limiting factor here. I don't like her. That's right.

Cynthia 49:25
I don't either. And luckily, she is a pediatric Endo. And so we will be she will have to find somebody new soon. So I'm hoping that we can find somebody that will say, I mean, I will say at this last appointment, and the doctor did say, now that you're a team, you really need to have a lower a one C which just blew me away. Why does it matter if you're 18 or not? A one C can be higher? Yeah.

Scott Benner 49:56
Yeah, yo, do you didn't know Cynthia that when you're younger? The Laws of Physics and other things don't even apply to you. You're just fine. I used to, I would go in with Arden. And I'd be like, Listen, this isn't right. You know, her blood sugars are all over the place. And they go, Oh, it doesn't matter now. It's like, what now? Like, doesn't that doesn't seem like it makes any sense. And then damages damage, right? They would say that, Oh, she's so young, it won't matter. It feels opposite of what you're saying is true. And so I just ignored them and went on to do other, you know, try other things. Obviously, that led us all here. But it is fascinating that they're like, Oh, they're young. Like, what does that mean? Does that mean they're I make make sense of that for me? Like, what is that? You know, and there's no context, no one knows what they're talking about. I mean, honestly, if there'd be no podcast if people knew what they were talking about. Because you go to the doctor, and the doctor would say sensible things that made sense to you. That worked out and were real. And then things would happen after that you'd have success and yay. But that's just not how it works. And your daughter gets sucked into it. And believes it. I would love to talk, right? I would love to talk to a kid who thinks there's no way anyone's ever going to come on like that. Right? But like, how great would it be for me to sit with your daughter and be like, That's bullshit. Like what's true? Like you are less congested? Yeah, you're listening to a moron that just has more college education than you do? Think that's right. Is it? Right, who would say that?

Cynthia 51:32
I mean, I will say I do think because I know the, once you're in the type one world, you find no, all these people, other people that are in it. And I'm guessing the majority of her patients are not as well controlled as my daughter, which just blows me away.

Scott Benner 51:51
Oh, that's great. That's wonderful. So your daughter's bank robber so we can we can let her petty larceny go? Yeah,

Cynthia 51:58
exactly. Right. I think that that is what they see, though. Because she comes in to see my daughter. And it's like, they're all happy, like, Oh, it's a relief. I don't have a kid in here who's got a 12 a one C

Scott Benner 52:12
know, what they have in there as a kid whose mom is up all night, trying to steal a onesie overnight. So that'll be great. You'll be dead soon. And you know, your lack of sleep, right? It won't even be like a medical problem. You'll fall over and kill yourself from being tired. And and then your daughters they want to go to 11. Right? And then what's she gonna say then to her?

Cynthia 52:37
Yeah. So she actually hasn't even had her a one C checked since COVID. So since last May hasn't been checked and kills me. But I mean, at least we have the Dexcom numbers, so we have a good idea what it is. I think she's gonna have it taken this next time.

Scott Benner 52:55
Cynthia made me upset first thing back from my vacation. A bit with this conversation. I know this happens. And I know that I shouldn't rant about it too much. But I'll tell you, there's a doctor coming on pretty soon an endo. And it'll happen way before in the timeline before your episode goes up. But, you know, one of the things she said in her note to me was I started listening to podcasts, I love the things you were saying about diabetes made me feel more. Like I wanted to try harder, I think is how she put it. And except she called what I was saying doctor bashing. So I would say this, if you're a doctor and you feel like you're being bashed right now, you're just not doing a very good job. That's not my fault. You know? Like, I'm think of me as a sports commentator in this moment. And you're a wide receiver and people keep hitting you in the hands with the ball and you don't catch it. I'm not bashing you. You're not catching the ball. That's, that's there's something different there. Like holding somebody to account is not the same as as bashing someone. Right? You know? And, and this is just you can see the the lineage of how your daughter got put in this mindset.

Cynthia 54:09
Yeah, yeah. And I mean, that's just my biggest frustration is I feel like yes, she's told they're the person who's supposed to be the expert that she's doing a fabulous job and they wish all her patients were as good as her and I just, there's nothing I can do at that point. You know what I look for a new doctor which I would be um, except now it's kind of out of my hands.

Scott Benner 54:34
You should have looked at the doctor and said that's actually a you problem. Don't don't use don't use my daughter's health and welfare to make you feel better about what's happening here. And and don't Don't be lazy by the way. I'll give you this. Most people probably aren't going to listen to good to good advice or common sense or anything like that. I'm I'm aware of that. If, if, okay, so we'll let that be. But that doesn't excuse you, as the doctor from saying it. Like, it's still your job to say it, you might expect that they're not going to listen, and maybe they won't. But that's not an excuse for you not to tell them you have that is free. It's not a waste of time. That's your job. And you don't you don't get to make yourself feel better by telling Cynthia's daughter that her seven a one C is great, because it's good. And it's okay. And it's not terrible, but it's not great. What my daughter's a one sees ninth grade. And it's in the mid fives. It's really, really, really good. But it's not great. There's plenty of people walking around who don't eat carbs, there's a one C is 4.8. Very one C is great. You don't mean like in I just mean? Like, you have to you have to look at the scale. I mean, where am I?

Cynthia 55:57
I feel like I wish they would also look at the variability. I don't feel I feel like all the doctor would look at would be the a one see, but didn't look at the reports that they have access to. I have shared all that information on that they should they should see these three, four hundreds that she's sitting out for hours and hours and then comes crashing down to these scary lows.

Scott Benner 56:22
This doctors just looking at the A one say,

Cynthia 56:25
I think just the a one thing again, I

Scott Benner 56:27
say malpractice. That's right, you know, how can you ducky. So it's confirmation bias. The doctors just saying, look, if I stare at this number, I'm doing a good job for this kid. You know? Yeah, yeah, it's terrible. Well, do you have a time machine?

Cynthia 56:48
I'd like one, because if you had

Scott Benner 56:49
one, I can fix this whole thing for you. But right. Do you remember the day you met your husband? Because we're gonna need that date while we fix all this? Right? No, I listen, I feel for you. It is. It's stressful. And it makes you feel like you're failing. I would imagine it makes you feel like you're failing on a couple of levels, which is terrible for you. Because you have it sounds like all good intentions. And, and you're going about it the right way you are being respectful of her and how she feels. And I mean, that is definitely part of it. And you can't ignore like, I want to be clear, like we've joked around a little bit in this hour, like you can't ignore how your daughter feels you'll push her away. You're right. So you have to navigate this whole thing. without it taking so long that your daughter ends up on the podcast when I'm 60. And she's 27 going, I really wish I would have listened to my mom. And now I get these you know, you know, this happens to me and the doctor says maybe I'm gonna have to get that like you don't mean like, because that does. But people come on here and tell that story. I ignored my parents when I was 16. And now I'm 30 and I'm getting injections in my eyes to try to slow down retinopathy. People have come on here and talked about that.

Cynthia 58:06
So that are not that old. And I and I do think though even though her a one C is okay, she does have these high highs. Yeah, the last and are doing damage.

Scott Benner 58:20
Right. So how do you get through to her on that? Right? I don't know. I really don't know. You were that's why hold on here just for this. I mean, did you try bribing her with a big enough idea? Did you go I've tried.

Cynthia 58:36
I've tried so many different bribes. She doesn't seem bribable anymore. We seem like we've lost that ability.

Scott Benner 58:44
Yeah, I would imagine because the bribing feels like a loss of power to.

Cynthia 58:48
I think that's exactly you think you just nailed it. You're giving? Yes, she's just as like, I'm gonna do what I want to do at this point. And then having a job now, you know, they're harder to bribe when they have their own money. She

Scott Benner 59:06
feels autonomous. It's good. By the way, these are all good things.

Cynthia 59:09
Right. They're all great things if you took away the diabetes, and that's the probably the biggest frustration to is, you know, I feel like our relationship would be way better. Her health would be better her mental health would be better you know, it's so it is it's it's a big thing for a teenager to take on.

Scott Benner 59:28
And you've said that to her like in that way. Oh, yeah. Oh, yeah. Like everything gets better if you just slightly in a slightly different timing fashion use your insulin.

Cynthia 59:39
Right? Yeah. And she knows I mean, you know, you catch her sometimes and you know, her blood sugar stable and you can have a more calm conversation that she like she seems to get it which I think is when she did decide, agree to wear a pump to try that for a while. You think, Okay, this is gonna go better? And it may be well for a day or two, and then she just doesn't want to. It's just because it is so day in day out. I mean, not not only day an hour, every hour, you're having to do something.

Scott Benner 1:00:16
Yeah, I am. I have to say I have a ton of compassion for her to it. It has to be so incredibly difficult to write to be

Cynthia 1:00:26
I do as well. Yeah. I mean, if I could take it just like any other parents, you know, if we could have it instead of our children, we would

Scott Benner 1:00:35
wonder if you could do something where you did it like every other day, like one day it was her and then the next day it was you. And like, if you could ease into it, so maybe

Cynthia 1:00:47
I again, I mean, she kind of lets us do the overnight, although I feel like that might be kind of going soon, too, because you know, she doesn't want us in her room at night. And she's an adult now. And now she's graduated from high school and

Scott Benner 1:01:04
well, so I was gonna say there every other night.

Cynthia 1:01:08
I'm hoping that finding a new endo will make a difference. And I'm really going to do a lot of research and trying to find somebody that I think will set a little bit higher bar.

Scott Benner 1:01:19
Do you think if she was here right now, and you weren't here, and I just said to her? Hey, be honest, like, you know, you should be doing that. Right? She just say, oh, yeah, I know. Yep. Yeah. Do you think she's screwing with you a little bit?

Cynthia 1:01:34
Maybe like a little bit of just showing that. She doesn't have to do what I say.

Scott Benner 1:01:40
Right that this is her side of the power struggle? Yeah, right. Yeah, there's probably here's how all assert and try to get the upper hand. I know people don't think of it that way. And you probably aren't consciously thinking of it that way. Or maybe even somebody Yeah,

Cynthia 1:01:54
and I don't think she would be consciously doing it either. Goes vindictive person. She's very kind and you know, person, but

Scott Benner 1:02:03
I want to say I don't mean power struggling like in like a nasty way. It's just a very human thing to want to be a

Cynthia 1:02:09
troll. Right? They just want to grow up. Yeah.

Scott Benner 1:02:13
No, even the littlest things like, Have you ever restack dishes in the dishwasher on somebody?

Cynthia 1:02:19
No, but my husband does it to me all the time. Yeah.

Scott Benner 1:02:22
Because in his mind, you're terrible at it. But do your dishes? Do your dishes come out clean? They cannot just find Yeah, that's what I'm talking about. Right there. That's literally what I'm talking about, is that just everyone thinks that their thing should be in charge that their thoughts and their ideas? That's what should be happening? Because that's what I think is right? And I'm it's just it's all it's got to be like animal instinct, the inside of you. Right? Like, just it works. Like it keeps us all alive. You know, trusting yourself. Because think I say this sometimes. But like, think of the alternative. Think of every idea your husband had he doubted? You wouldn't want that guy to be your husband. But you also don't want it to be so strong that he's like, look what you put the dinner plates again? Oh, my goodness, what a moron. Let me move. You know what I mean? Like, obviously, this is the way it has to go. Like, that's the wrong side too. But it drifts into people's lives like that. So is, is the answer here for you. If you love something, set it free. But the problem is, I think the rest of that saying is if it doesn't come back, you have to hunt it down and kill it. So you know, like, I mean, is more freedom, what she needs? And how long would it take if that happened for it to work into good health?

Cynthia 1:03:44
Right? Like, I mean, how bad do I let it get?

Scott Benner 1:03:48
Well, maybe you call her bluff? Or maybe you know what you are right? I can't believe it. But you don't say it with the sarcasm in my voice. But like, you are right, you're an adult. And this is all yours. So, you know, I'm, I'm gonna let you take care of it. I trust you. I wonder how quickly she'd be like, Whoa, where are you going? Wait, because maybe that's your power move, then. Maybe that's your power move. To get your power back. Maybe you have to give it to her. I know for sure that that is the plot of a lot of science fiction movies. Okay. So maybe that'll work in real life. You give her the weapon. It's hers. And then

Cynthia 1:04:32
how do I let her float it to 50 then all night long. I don't know where I go do something about it.

Scott Benner 1:04:38
Did you see the Facebook post in the private group where there was a kid that wasn't managing themselves well, and they'd got like super high. And some of the adults this is where I love the group because the group is pretty mixed between adults with type one and parents of type one. It's a great atmosphere. If you can be open minded because you will get different perspectives. And a couple of longtime type ones came in and said, Oh, you know, you know, let it happen, let her throw up. And then you know, parents like you can't tell them to let her kid going to decay. And they thought it was lovely. And and it wasn't fighting. It was like it was a good spirited conversation. And while I don't think not, not, I don't think I did not read any intention from the adults, like, Oh, let your kids go into decay as a punishment system so they can see what it's like. But what they said was, from their perspective, some kids don't listen, trust me, maybe they were one of them. And the only thing that brought them around was seeing the end of the tail that your wag your finger about, you know, like, you understand this is bad for your health. But you never let them get to that part because obvious reasons. And so they don't really believe it happened. So there were a couple of adults who were like, look, blood sugar will get I started throwing up, you know, and you know, of course, you're going to go into decay really quickly. It's super scary, and very, very, you know, bad and not medically nude. No one's telling anybody to do that. But it was from a theoretical point of view that they were having the conversation. And I'm not saying let your daughter like spiral into decay. Certainly, because there are other problems that come with higher blood sugars, like she might become more resistant and less easy to deal with than she already is. If sugars go up and up and up. But I'm wondering if she isn't still young enough that we're faced with the real possibility of managing this 24/7 on her own if she wouldn't say, Well, I don't really want that, because she lets you have the evening, right? Like, blah, blah, blah, why don't you tell her look, I'm happy to do overnight. But I want to Pre-Bolus the meals for a month, just so we can see how it goes. Like maybe you could actually get her variability down, and maybe she'll be more clear minded.

Cynthia 1:06:54
Yeah, I feel like she would be.

Scott Benner 1:06:57
So I mean, do you think you could get her to just a month like a trial? No. Really? What if she didn't know?

Cynthia 1:07:06
I mean, we've tried that. You know, we we I've tried just to get her to do one meal. And every now and then she will or sometimes she'll just do it and then Dinner takes longer than she thought it was going to

Scott Benner 1:07:18
Alright, how much or is her older sister?

Cynthia 1:07:21
I'm nine years.

Scott Benner 1:07:24
Do you think she could help her?

Cynthia 1:07:27
Maybe? Yeah, I mean, her siblings have been super supportive

Scott Benner 1:07:31
or get supportive. Do you think you can get to the older sister? And tell her look, this is what's going on? I need you to backchannel this. Maybe that's how wars are won. Seriously? Oh, yeah. They're number one the way you are. So I mean, maybe if she'd listened to her more. And it's got to come from a very like, Hey, how you doing? How's everything? How's the diabetes going? Like, he can't be like mom said that your schmuck like he can't be like that, right? But maybe a voice other than yours. How about your husband? Does he? Does he try? Or is he just like, oh my god, please? I'm so close to retirement. Like what?

Cynthia 1:08:09
No, he's super supportive of me and her. I feel like he's sort of this, like neutral.

Scott Benner 1:08:15
Yeah, field, Switzerland, you know, like,

Cynthia 1:08:18
like, he'd like her to do heat. And he does see that he wishes she would do more to, and he helps with the, you know, nighttime stuff as well. So yeah, that he does remain more neutral. He doesn't get as emotionally involved as I tend to,

Scott Benner 1:08:37
I don't, I don't direct this at you. And I genuinely am not directing this at you, but you brought it up. So I'm gonna, like, go a little deeper into it before I am assuming you have to go to work before I let you go. That idea of like, oh, everyone's so supportive. I don't know what that means. Like, if you're not in there throwing hands with me, then I don't care that you're standing behind me going like go go go, I don't want go go go. I went get in here and help me hold this alligator down while I tie his mouth shut. Like Like, don't, don't just tell me you've got my back, like, get in the fight a little bit. And I hear that from so many people. Oh, she's so supportive. Or this one's tough. I'm like, I don't know what that means. Like, I'm struggling over here. I need help. I don't need support. Like, you know, when you know, when we won't need support when we're not resting on the alligator anymore. That's what we'll just go live our lives. So I just think that I think that in so many interpersonal relationships, somebody gets tasked with this terrible thing, mate, you have to do like having this embroiled, you know, conversation with your children you don't want to have and then there's always a person who stands the back and I heard somebody say to me one time it's not a person who's ever been on the podcast. I'm sure they may never be on the podcast. She said all my husband's a good man. He doesn't get involved in this though. I'm like, Well, I don't know. And all that means is a good man was he doesn't hit you. And he brings this paycheck home like 35. Like, how are we judging this? Exactly? You know what I mean? Like, this person is struggling mightily with a problem that her husband will not get involved in. And yet when it comes up, oh, he's a good guy. Oh, my God, you gotta raise your bar a little bit here. You know, like, I don't know what that means. Like, I like, I just I don't know what that means. You're having trouble, like, you need people to help you. You know, you're this is look at you. You're on your own your list. You're talking to me trying to figure a thing out. I mean, Cynthia, really, this is a bottom of the barrel move. You know, you're out of ideas. Lower. You're like, I will let my story be fodder for a podcast so that hopefully something comes up in the conversation that might help me that's desperate. Right. You know,

Cynthia 1:10:53
I honestly believe that there are a lot of mothers and probably fathers out there that are in exactly my same position.

Scott Benner 1:11:02
Yeah. Yeah. Oh, no.

Cynthia 1:11:06
A hard one. When these kids that are becoming adults.

Scott Benner 1:11:09
Oh, Cynthia, is this happening to everybody? Not just Oh, yeah, this is happening to absolutely almost everybody, except those of you who are lucky to have some, like, super type a kid who's just like, sees those numbers like a video game and just trying to like put them where they want. Right, right.

Cynthia 1:11:27
Yes. And those kids are out there for sure. Yeah.

Scott Benner 1:11:31
Everyone else? This is a this is the game. Right, right here. Well, the next time I talked to one of the therapists that come on the show, I'm going to, I'm going to, I'll bring this up as a topic, and I'll see what I can do. But I mean, until she's willing to bend. I mean, right. I mean, any negotiation needs two sides to be willing.

Cynthia 1:11:54
Right? Yeah. And she has her moments. And so that's why I do believe she's going to get there. I just can't find the right negotiation tactic at this point. To get her there sooner. I just like to get her there sooner.

Scott Benner 1:12:13
I find myself wondering if the adults listening aren't thinking like, oh, just let it go. It'll work itself out. And then there's gonna be some who think don't let it go, because it's just gonna get worse. But I feel for you, and I right, I understand exactly how you feel. I have felt the exact same way. I mean, not the same situation, but I felt the same way.

Cynthia 1:12:33
And even the therapists that you know, so the professionals that we've turned to because you know, we don't have I don't have to have found a therapist that has type one or really can understand it. So they don't, they probably think I need to back off to

Scott Benner 1:12:50
you're not in California or you were not.

Cynthia 1:12:53
i Yeah, I've heard your

Scott Benner 1:12:55
Sarika is good. Erica. Yeah. Yeah, well, right.

Cynthia 1:13:01
Endo, and therapists, you know, they're kind of just

Scott Benner 1:13:05
you need, you need allies,

Cynthia 1:13:08
right? I've got no one. It's just me and my husband, he's definitely supporting

Scott Benner 1:13:13
people to come into the fight. They're going on the other side,

Cynthia 1:13:17
right. We're just trying to find that balance of not ruining our relationship with our daughter forever over this. I appreciate that. But then also, again, being you know, again, that, to me, her health is a non negotiable, you have to take care of it. And we do have some very strict guidelines on you know, if you're going to drive our car, your blood sugar's need to be here, you need to be doing these things. So

Scott Benner 1:13:42
that's all that's all. That's candy ash. I wish you were more east coast. Because you would have gotten on top of this a couple of years ago, I would have, okay, a couple of fearful moments would have snapped right in the place. I think. I picture picturing my father. I haven't told the story in a long time. But I was sick when I was younger, just something simple. And you know, everything wasn't as great as it is nowadays. And they gave us this giant pill. It was like this dry tablet was really hard to swallow. And I balked against swallowing it. And I think the next thing I remember is my dad's finger, just like you know, in my mouth, then I was like, oh, okay, I guess I can't

Cynthia 1:14:20
swallow, swallowing a lot.

Scott Benner 1:14:23
And again, I don't I'm not saying that that's the vibe, but in the 70s You know, in certain parts of the world, like you didn't, you didn't get a vote on how this happened. And if I was 18, and I and my dad was, you know, gone by them, but I don't think it would have mattered to him that I was 18 I certainly don't think so. Around stuff like that, like a medical right, or safety thing. You know, I think that I think that if I was 25 and I did something, you know, illegal I don't think it would be met with tell me how you feel. I think it would be met with You know, something far harsher? And, again, I don't think I'm not saying you should do that. I'm not even saying that I would do that. I'm just saying that there's somewhere in between where we are now. And where we came from has there has to be a balance in there somewhere like your daughter, not that I want people to be afraid. But she's not afraid of you at all. Because if she know if she was, she'd bend, you know what I mean? Like, there's no, again, I want to be clear, I'm not saying rule by fear. I'm just saying that things have swung so far in another direction, that when you get into an untenable situation, you have nowhere to go from here. Like you're now stuck hoping that your daughter figures out that her health and her life are valuable enough to pay attention to this, and that she can see through what the doctor saying, and all these other things that I'm pretty sure she's not equipped for. You know, it's a weird world. Yeah, you shouldn't have kids. This was your mistake.

Cynthia 1:16:01
That it was the third maybe I should have stopped.

Scott Benner 1:16:06
No, no kids are delayed. There's just times where it's like, it's so good in the beginning, right? And then like, even Yeah, it'll they're like 12 They're amazing. Even get some good ones that you know, up into 17. situ, but then right in that space 1821 in there, man. And they are really starting to like see things and but they don't see enough of it yet. The make a full form, right?

Cynthia 1:16:30
Yes, they don't have they don't really have a full vision, but yet they think they do.

Scott Benner 1:16:36
And if right now, if you're listening, and you're 21 you're like, Who the hell is it? But trust me, you are going to get to a spot where you look back on yourself at 21 and think you didn't know what I was talking about. That's amazing. And yeah, and that's part of the fun of life, actually, except when part of those things can be a medical issue that might cause like, real permanent problems. So wow, I'm sorry. Yeah, I was.

Cynthia 1:17:02
Okay. We're getting through it. And I mean, she's a great kid. So Oh, yeah. Yeah.

Scott Benner 1:17:09
I never meant to say otherwise.

Unknown Speaker 1:17:11
I know, I don't feel like yeah, good. Good. Yeah,

Scott Benner 1:17:14
I'm sure. I'm sure it's gonna work out great.

Cynthia 1:17:17
makes it so hard. Just watching that. Yeah. Yeah. Knowing that there are just I mean, literally, just the Pre-Bolus alone, I think would keep her out of those three 350s 400. Sometimes we would. And then the other thing, I just can't understand that she has the Dexcom with these alarms with why you're not responding to the alarms just to respond to the alarm, and then

Scott Benner 1:17:44
come on up. Have you ever worked fine. Have you ever walked into the house and been like, I can't be the only one hearing that? Right? Yeah, but you are.

Cynthia 1:17:54
She wants me She wants me to bug her less about it. I'm like, so then respond to the alarm.

Scott Benner 1:18:01
You know why you hear it? And they don't, right? You hear it? Because you gave birth to her and you care about her thing on the whole planet. That's why there really is it's true. It is it is harder to care about yourself than it is to care about somebody else. That's that. And it's, it just becomes the truth. No one's going to care about her the way you do. It, just really, it ends up being, you know, honestly true. And I'm sure one day she'll meet somebody that is going to care about her a absolute ton. And then one day, they'll connect themselves together with family, maybe, and then they'll start having that feeling about each other. But I care about the woman in my house now, differently than I cared about her when she was my girlfriend, and differently than I cared about her when I was married to her and we didn't have kids. And that stuff grows. And you're just you're at the pinnacle of that right now. You know, you don't want anything bad to happen to her and trying everything you can think of to stop it. And that's a that's, I mean, that's the whole that's the gig. Right? That's the whole job. Right? Yeah. And, you know, the truth is, you don't have any real sway over that with your other two kids, either. You're just not seeing it as starkly because it's not medical. Right,

Cynthia 1:19:23
correct. Yeah. Correct. Yeah. And I mean, we definitely went through this with our other two children, for sure. You know, that, that when they have turned that magical 18 number when they're in high school, and they think that that means that they then should no longer have a curfew or house rules or anything. Right. You know, we went through that it's just on a different level when you introduce diabetes into it.

Scott Benner 1:19:45
Yep. No, I hear you. diabetes sucks. I hear what you're saying.

Cynthia 1:19:49
It does. Doesn't really does terrible.

Scott Benner 1:19:53
We're trying to make it more fun and more accessible and easier with the podcast. That's Mike All

Cynthia 1:20:00
right. And I do appreciate that I do find a good sense of community from it. I don't listen to it as much as I did, you know, in the beginning. And but so now I want to watch or listen more to episodes that look like they might apply more to me or especially product updates. I'm always interested in that, hoping that that Omni pod horizon will come out sometime soon.

Scott Benner 1:20:25
There are people listen, there are people who listen to it like it's religion. There are people who listen just the way you described, I think there are people who stay more in the the management topics. There are people who stay out of the management topics and love to convert, like there are people who are going to listen to this and love this. And because it's just a real conversation about anything like you, you and I could have. We could be on a podcast right now that's not about diabetes, and just be talking about raising kids and what it's like and teenagers right? would not have been any different. So yeah, so people listen, always, as long as you're subscribed in your podcast app. I am. That's what matters most listening,

Cynthia 1:21:06
I have a feeling I will probably transition to listening less and less in the years coming but it has been a great community resource to me over the year

Scott Benner 1:21:14
we completely believe and understand that so but never unsubscribe. Cynthia or Okay, Dr. House and take all the knowledge I gave you. I will take it back. Okay,

Cynthia 1:21:23
okay. I have even subscribed my daughter to it. I don't know that she's listened. But it is subscribed on her phone as well. So there you go. Oh, I

Scott Benner 1:21:32
hope she did make it listen,

Cynthia 1:21:33
I just hope that one day she'll be have nothing to do. And she'll be in her podcast app and think what is this?

Scott Benner 1:21:41
The kids have something to do constantly. Right? They're so connected to everything. It's, it's fascinating. What I imaginal hap, listen, if you want to make a prognostication what's gonna happen is what happens to everybody. Something's going to come up in her life that makes her realize that her health is important. And then she will hopefully find good answers to to lead her to those things. Like, if you listen to everyone, listen, first of all, let me just say this, Cynthia is a sentient being who can do whatever she wants, but you should all be listening to every episode. And so if you listen to those episodes, you'll hear those conversations, you'll hear people having that moment. And it's almost always tied to the concern for another person. It'll be she gets a boyfriend or a girlfriend, or whatever her deal is, and she loves them. And she's like, I want to be healthy and be around for this person. Or, you know, people have babies, and then they're like, oh, I have to be healthier for the pregnancy. And then now I need to be healthy to be here to take care of them. People, I think need to be needed. And when they are, then they see themselves as more important all of a sudden, like, I don't think people see themselves as important until they're tied to love is that the right word? Like I don't know, like, I guess you can love yourself and have that feeling. But you have to love something deeply enough that you want to be around for it. And I know that's not a that's not an absolute. But having conversations with people over and over and over again, if you really dig into what they're saying. They're saying at some point, I needed to be here, and I realized it. So I'm assuming she'll realize that too. Maybe it'll be art. Maybe it'll be like, whatever her love is or something. And it doesn't have to be a person. It could be a thing. It could be an idea. It could be a vocation, or calling or something. So maybe you just have to let go a little bit. And yeah, trust the process. That's what we did in Philly, and we're working to win a playoff spot and basketball, maybe fun. Yay. Trust the process. That's a very, I'm sure most people don't understand what I'm saying now. But we drafted a lot of people and traded them till we got the fight. We want it not not the point of this point is let go a little bit taller, you're concerned and your lover and you're here. She knows you understand it, right? Like the diabetes. Okay, so yeah, I think that you're inept.

Cynthia 1:24:16
Yes. And I think it's a little frustrating to her how much I understand it. I think she she thinks why are you doing this? You don't have diabetes, because again, for her, it's a me thing. Not a weed thing.

Scott Benner 1:24:30
So I went away. I'm sorry. I didn't mean to cut you off. I apologize. I went away this week. And Kelly said that in the first two days Arden's like, Don't worry, I have my diabetes. And she took she did a really great job. So but why did that happen? My wife didn't feel well. And so Artem was like okay, I'll take this off of her. And then it's just doing a very good job of it. And you Yeah, and but again, if Kelly would have kept doing it, then I guess Arden would have kept letting it get done. Cuz I'm like, I'm out of this. Like, if you need something, let me know.

Cynthia 1:25:12
And do you feel like Arden lets you do that just because you always have? I mean, what do you think she would be like had she not had diabetes until she was almost 16? Yeah,

Scott Benner 1:25:26
I don't know. Oh, my God, I probably would have to kill her. But I would probably have to dig a hole on some property somewhere and get rid of now I don't know, like, I have no way of telling. I mean, right, you got it when she was 16, it would have been more difficult. Like we had there's a Pentameter to our care, right, there's a way it flows and runs exactly right becomes accepted at some point. That's why I said in the very beginning, maybe if you would have like, just done it, then either would have been the power structure would have been in your favor. And then it would have drifted to her. Instead of it started in her favor, like you basically elected an actor as president. And you know what I mean, and now you're the like, the tried and true politician over here going, I don't think you understand how this works. It's like too late. I'm in charge, baby. You know, like,

Cynthia 1:26:17
the coaches telling her that she's doing it. Well. Yep. And she's doing a great job. So

Scott Benner 1:26:24
she thinks it's all going. Well tell her I said, it's not going bad. is nothing to be ashamed of. Right. She's doing well. There's just there's there's simple improvements to be made that would would reap incredible benefits. I know. Yeah. All right. Well, listen, shorter meat come in there and living in your house. I don't know what else to do knock some sense into her talk through it. You know, I mean, do you have any idea what you're going to do? With what with all of this, like, you're going to leave here and think about this? Do you have any idea what you're going to try next? Did anything make more sense than the other? Well,

Cynthia 1:27:03
you know, it's funny, the timing and that she's been on the pump for this few days. And it's going well, so at this point, I'm sort of trying to back off a little bit more, and let her do this pump. And just keep being the, you know, hey, if she's eating dinner with us, just keep providing the dinner's ready in 20 minutes, and it's 50 carbs reminder.

Scott Benner 1:27:29
Have you have you considered just adding directive to your reminder, so hey, dinner's in 20 minutes. It's gonna be 50 carbs Bolus now? Yeah,

Cynthia 1:27:40
yeah, I do. Yeah, yeah. Okay. Yeah. I mean, she often doesn't, but, um, but sometimes she does. Let me she had a really good meal yesterday. So and like I said, it's going a little better. But I'm probably am. It's summer. Now. She has graduated. And I probably am going to start backing off more at night time and

Scott Benner 1:28:03
see what happens next.

Cynthia 1:28:04
Yeah, see what happens. Don't Don't worry. Maybe just follow up with her about how she feels. And and the other thing is, we are looking for a new doctor. Right. So I would think those would be kind of our two.

Scott Benner 1:28:17
Maybe you got to let her come to you a little bit on it. So yeah, right. Well, this was fun. And by fun, I mean, a clear, clear directive to single people not to have children. I think everyone heard that. Oh, my God. That's exactly how it was to my mom. I should avoid children. I would I would think we've stopped people from having sex right now. But this conversation like, I'm worth the risk,

Cynthia 1:28:39
right? Gosh, no, they're worth it. They're all worth it.

Scott Benner 1:28:43
It really is. I love having kids. Which is why I guess I can like joke about it. But still, I mean, honestly, if you look

Cynthia 1:28:52
hard, it's emotionally exhausting.

Scott Benner 1:28:55
You could find yourself in your early 20s and be like, hey, guess what's gonna happen? Never believe yourself. You'd be like, That's great. My kids are cool. I'm cool. It's gonna be great. Yeah, okay, fine. Anyway, good luck with all that. Thank you very much for doing this. A huge thank you to one of today's sponsors. G voc. Glucagon. Find out more about Chivo Kibo pen at G Vogue glucagon.com forward slash juicebox you spell that? G VOKEGL. You see ag o n.com. Forward slash Juicebox. Podcast was also sponsored today by the Dexcom G six continuous glucose monitor. And you could do no smarter thing today then to go to dexcom.com forward slash juice box and get started with the Dexcom G six. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast.

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#590 Empty Nest

Susan is an adult type 1 and a mother.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon 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 590 of the Juicebox Podcast.

On today's show, I'll be speaking with Susan. She is a person who emails me a lot. Not a ton, but a fair amount. And I liked her emails and thought, well, I bet I'd like Susan. And I did. And I think you might too. Please remember, while you're listening 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. I don't want to give this all away. So I'll just tell you that Susan was diagnosed at age 14, and she's just recently turned 60 years old. She's had type one diabetes for quite some time. Her experiences are interesting. Her perspective, unique, and her style is delightful. Hello. Hello. Hi.

Susan 1:08
Hi, Scott. Are you like I know you but you don't know me? It's very weird.

Scott Benner 1:14
I feel like you'd think you know me and I definitely don't know you. That's that's the that's the whole point of this right

Susan 1:22
now. So we don't see each other. Is that correct? It's just Yes, yes. Okay,

Scott Benner 1:27
that's fine. This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Find out more at contour next one.com forward slash juicebox. Get the meter that my daughter uses. This episode is also sponsored by Omni pod makers of the Omni pod dash and the Omni pod promise. You'll find out more about the promise later. But right now, let me tell you that if you're interested in finding out if you're eligible for a free 30 day supply of the Omni pod dash, it's just a click away at Omni pod.com forward slash juicebox.

Susan 2:04
Hi, I'm Susan. I live in Jacksonville, Florida, which I never thought I would live in. And I have had type one diabetes. Well, next month will be my 45th diversity. And so that you know, and I got it when I was 14, and had a bad start. Rough many, many years.

Scott Benner 2:27
Before I asked you about that. Do you broadcast your voice for a living? Or have you in the past? You have a very lovely voice?

Susan 2:33
Oh, you're so sweet. No, I was actually thinking about how I probably would hate my voice if I was hearing it today. And you know, but I just have to speak and not think about that. Because otherwise I would hate it. I probably mess something up.

Scott Benner 2:50
Of all the things that I know you're very welcome. But of all the things that I don't expect from people, that's one of them that they're very concerned with what their voice sounds like. And I always say the same thing. Like no one knows what you sound like either even you by the way, you don't know what you sound like,

Susan 3:04
well, we hear our voices through the bones in our heads. So we don't hear our voices the way other people hear though.

Scott Benner 3:11
No, but your your voice is smooth. It's a little creamy, a little smoky. And then you modulate once in a while. It's like you're doing it on purpose. But you're not are you?

Susan 3:21
No, not at all. That's really great, though, I do love the idea of like, reading out loud. I used to do that with you know, when my kids were little I read to them out loud and you know, good. And I listened to podcasts and books on, you know, on audio, so I know that it matter. You know what I was doing it very unconsciously.

Scott Benner 3:44
Well, no, it's so funny that that's what you thought of because the juxtaposition is, I was thinking, you know, back in the 80s when those adult phone lines were open, you probably could have made a lot of money.

Susan 3:57
So you can really still use a you know, like, a little from home occupation. So

Scott Benner 4:02
I don't think that business anymore, though. I mean, I think technology has gone past a lady on the phone being nice, too. So yeah, that's true. It's got to do you remember in back in the day like at midnight on you're watching television, all of a sudden like a stark phone number would pop up in front of you and some girl in what appeared to be a lingerie would start telling you to call her and you're like, why is this happening? And I really hope my parents don't see this.

Susan 4:31
She had real smoky creamy voice. I mean, that was over the top. Yeah, I think we I mean I know the type. I'm not that type but like yes, I remember.

Scott Benner 4:42
Alright, now you're like listen, this is not what I expected from this. Tell me

Susan 4:47
listen to enough of your own

Scott Benner 4:48
you thought this was my

Susan 4:50
baby you you know and and their conversations and that's that's really

Scott Benner 4:53
good. For you said 14 When you're diagnosed. I was How old are you now? Can I ask

Susan 5:00
Well 45th Diversity next month and my birthday is in October. So let's see calculator. So

Scott Benner 5:06
hold on 45 is easy. And then you add 10 to it. That's what I would do. 55 And then you got to get the four that you left behind. That makes you 59

Susan 5:15
That is correct. And I've tried ever since I turned 50 I've trained myself to not be embarrassed to say that because it is a little bit of a mind bender. When inside you feel young, and I do feel young inside in so many ways. I don't feel like what my impression when I was young of what a six year old would be. So, and I have friends of all different ages, which I really love, and I really proud of that. So, um, yeah, I'm gonna be 60 in October. Anyway, so yeah, 14 years old, we change things I would

Scott Benner 5:52
imagine. So do you remember anything about it?

Susan 5:56
About my diagnosis? I remember. So it happened in June when I actually finally got a diagnosis. I do remember. I was in eighth grade. And I remember spending, like probably two semesters of running to the water fountain as soon as class would let out. You know, impeding lot all the classic symptoms. But my mother who was usually a, you know, run them to the doctor at the first sniffle. I think subconsciously, she knew something was really going down. And I think she was I'm surmising here. But I do think she just, she knew that I had a regularly scheduled doctor's appointment in June. So we waited it out. And I do also remember that the last week or two before that doctor's appointment, I was too sick to go to school, like I was home, and I remember orange juice, I remember going to a fair, we would have a memorial day fair in our town, and there would be you know, Slurpees and can be cotton and stuff like that. And I was not like a big sweets person. But I remember like really screwy dietary choices. Because I didn't know what was going on in my body. Anyway, then I got my diagnosis. Um, you know, I was in the hospital, my parents came in, and they were like deer in the headlights. And I kind of sort of said a 14 year old, who didn't know what she was doing loose, you know, to her own devices. And my doctor was not I, you know, if they, if it were my kid now, I would switch them to an endo right away. But they let my primary care physician be you know, do everything. And I remember leaving the hospital after about a week saying, shouldn't I get a special diet or something? And I was told, you can eat what you always eat. Just don't eat too much sugar. I mean, oh my God. Is that bad advice? Or what? So honestly, I don't even know how I stumbled through the last 40 years. I really don't. And I consider myself very, very lucky that I do not have any severe complications.

Scott Benner 8:33
That's I mean, I, I'm a little frozen by it not because not because my experience was so much different, or that things are so much different now. But because of what you just said that you came out the other side. So like, not effortlessly, but well? And how? Like, do you ever think about that, like the randomness of Lacan? Oh, yeah.

Susan 8:58
Because I think some of it was genetics, you know, because I can't account for it any other way. And I just like, I didn't know what I was doing. And it wasn't till. Honestly, there was it was, it's been a life journey that I kind of only embraced in stages. So I met my future husband when we I was in my late 20s. And that was the beginning of kind of wanting to take care of myself better. I mean, no one ever said, Hey, listen, you're really going to have to do this on your own. And because you see your endo like once every three months, like they can't live with you every day. So you're gonna have to do this and you're good. You better study about it too. And I really just ignored all of that. And then I you know, and then I we decided we wanted to get pregnant and you know, I know knew I had to take care of myself on a different level to do that, in preparation for it. And during the pregnancy,

Scott Benner 10:06
did you know that the doctor told you? Or was it a feeling?

Susan 10:10
Um, I don't, I'm trying to remember if it was like me reading or the doctor taught parallely both, but there was that image of you want to make your body your incubation incubator, like as, as close to normal as possible. And so as a pregnant mother, you're, you're, you're thinking, Oh, my goodness, like, oh, day 72 My blood sugar's high. What part of the baby is developing today that I could be affecting for its life? So you know that yeah, I was really aware that I had to be really, really careful. And my blood sugar's were great. I was still on multiple daily injections. I had an endo at the time, I was living in New York City at the time, and my endo had said, I had asked him about these newfangled things called pumps, like, and he said to me, I know you, Susan, you it will remind you all the time that you're diabetic, you will not like having one. And that was really bad advice. And I don't know whether he some people have suggested that maybe he just didn't know how to help you, you know, have a patient with a pump? And I don't know, I'm not going to pin that on him. Maybe he really did think he knew me.

Scott Benner 11:33
Um, maybe maybe people should keep the first thought they have inside of their head till they're sure about it. That's a problem that people had like, oh, occurred to me what's

Susan 11:42
happening is when my son became a toddler, I found that I could not you know, I my blood sugar's were all over the map, because I was dealing with him first and dealing with me after. And I just thought, and by then we were living in New Jersey, and I had a different Endo, who had handed me a VCR. Remember, VCRs, she'd handed me a VCR, about about pumps from one of the pump companies. And she said, Just keep it. You know, one of these days, maybe you'll watch it, maybe you'll be interested. And I remember seeing it in my VCR player, when my kid was about two, two and a half. And because I thought I'll never have any more children. If these are my blood sugar's I can't do it right now. And I looked at that video, and I said, Oh, my goodness, I need one yesterday. And we got a pump really fast. I believe it wasn't an sunshine, remember, because we I did stay anonymous for a good long time. Until they

Scott Benner 12:52
I'm amazed that your endo gave you a VCR tape and gave you the instruction like you hear from people when they want you to think about life insurance. Take the packet home, look at it when you have time. Yeah, that's interesting.

Susan 13:06
I guess the older the other end, is, his voice was in my head, maybe? Like this isn't? Yeah, she didn't give me a hard sell, which was probably fine. Because then when it was meant to be then I moved on head. So then oh, and the other thing that first endo had said to me was, I challenge you to show me a person on a pump that has as good blood sugars as you do now, I did get through a twin pregnancy on MDI, and they were good blood sugars. But, you know, of course, I don't know if he was looking at the hemoglobin a one C at the time, because we know that that is not like I knew I was getting highs and lows. Not not necessarily during the pregnancy, that I mean about that all the other times,

Scott Benner 13:55
what's that, like? Cuz you're, you're, you're an adult, right? Like, I don't mean that other people on here on adults. I mean, you've got experience on top of decades. So what is that really like when you know the truth, and yet the person across from you is gone. You're doing great. And when when he says or she says you're doing great, and you're thinking I'm not I almost fell over on the kitchen floor the other day, and then my budget was 400 After I corrected it, like, why not speak up? It feels like going to a mechanic and you know, the car won't stop and the mechanic goes, I This thing's great. You just go okay, and you drive away like why not go no, no, no, the brakes don't work. Help me.

Susan 14:33
Well, I'll tell you exactly why. You know, it took a long time to change a mindset because I you know, I had been in that particular group for a very long time. That's one thing. I didn't have a I didn't have a concept of really, where my blood sugar's should be like what was truly healthy and I will tell you one other thing about my lows. I think I've been enormously fortunate. I've never had a seizure. I know that you had that experience with Arden. I've never had a seizure. I have never passed out. I passed out once in my adult life and had nothing to do with diabetes, believe it or not.

Scott Benner 15:19
Is it when you found out you had to move to Florida? Pardon me? Did I find that I had to move to Florida?

Susan 15:26
Honestly, where Jacksonville isn't like the rest of Florida, and we really love it here isn't

Scott Benner 15:30
people from all over Florida, listen to the podcast be nice.

Susan 15:34
Like we'd like our community very much. Um, but no, I just, um, I think I that was never I haven't been afraid of Lowe's. Or maybe some of that was ignorance. I mean, when after hearing some stories on your podcast, I think, oh, you know, maybe you should be a little bit more concerned. I could feel them even before I had the technology to show me where my blood sugars were heading. I could feel them I never was insulin on or, you know, low unaware. And I would treat them and I never walk out of the house without juice boxes. So you know, I love the name of your podcast is very close to that. Is it like small ones, I found the small with

Scott Benner 16:18
the tiniest ones to fit in your purse, I'm always worried when I give them the art. I'm like they're gonna break open in there and ruin the purse. Like that's what I always think about and never happens. And I'm always by the way, whoever makes juice boxes is an engineering genius, because you can basically throw them around and squeeze them and they won't break anyway, props to that person.

Susan 16:35
I've had like, some be carried around long enough so that they start to lose their shape. And then they will start to leave.

Scott Benner 16:47
You think yourself, I'm going to throw this one out. This one's done its job even though I haven't drank it? Or do you? Or do you follow through and trick?

Susan 16:56
Oh, um, it depends on if it's an emergency. Yeah. I mean, honestly, if it's starting to leak, I'm throwing it. But if you you know, if I've discovered it, say I'm in my bedroom, minutes the morning and I'm refilling my handbag or something, right? You know, if I'm somewhere, you know, it's Yeah, try doing a try doing a juice box with a mask on on an airplane. I didn't do that. I decided that was not going to work because I recently flew to California, like, can't do it. It's a two handed proposition in order to remove the bottom part of your mask. If you're really trying to keep masked, you just can't

Scott Benner 17:36
you imagine a person sitting next to you doesn't know you're that's like this lady's breaking the mask rules to have a juicy juice. Let's

Susan 17:45
see, when my kids were little. I mean, my kids kind of understood that this was mommy's medicine. But I remember a friend of theirs. One day, looking at me we were sitting in, in our synagogue, and he looked at me and it was really young. And he wanted one too. And I'm so sorry, this is like,

Scott Benner 18:08
get away kid. I saw a gentleman at an event one time, who had type one who was a massive person, you know, he was six, four and probably weighed 240 pounds, and he was this huge guy. And he was walking around drinking this juice. And it was it just looked so much tinier in his hand than it does anywhere else. And it, it felt both kind of initially ridiculous. And then the more I looked at him, I thought looking help kind of like effortlessly and without consideration. This grown GIANT PERSON is wandering around and just drinking it felt nice afterwards that he didn't feel automatic, you know what I mean? But yeah, but back to my question, though, like so all that time prior. And the doctor just tells you like hay, whatever you say you have to change your your perspective. And your idea of what good is and you're telling a common story that most people tell I met a person I wanted to be healthier, I want to have children I want to be healthier, like that kind of stuff that seems to be very human that idea of I don't need to better myself until it benefits someone else I've given up on understanding it just seems like that's how it is.

Susan 19:18
I think I connected that actually embrace like I do now, but I know now that the bad, right? Take care of myself that, you know, then then, like I have to pay a lot of attention to diabetes in order to have a better quality of life. And in the past I thought that ignoring the diabetes, which is like good, it was rare, and I had to deal with it when it was too high or too low. But I really like oh my goodness when you're on it. Well, when I first started taking injections, it was Lintian regular and it sets your course for the day. Yeah, you You know, and I balked against that. And honestly, I don't think it was ever Well, I was ever well schooled in it. But I just like, pumps were made for me I needed to be able to live my life in a, you know, where life was coming first, not whatever schedule was set for me and I and as I said, my parents were deer deer in the headlights, so I didn't really, they didn't know what was going on. They didn't really try to educate themselves. You know, I wasn't sent to diabetes camp. I didn't know any other type one diabetics for decades.

Scott Benner 20:42
Right. And you were was an island. My math is right. You were diagnosed in the mid 70s. Ish. Yeah,

Susan 20:48

76. Everyone was else was celebrating the, you know,

Scott Benner 20:53
the centennial? Well, but my where I was going with that is, do you remember how old your parents were around that time? Ish?

Susan 21:02
I could figure it. Let's see. Yeah, mom would have been about 44 Because she had me when she was 30. So

Scott Benner 21:09
your mom was born in the mid 30s? Then? Pardon me? Your mom was born in the mid 30s. Meaning that she grew up in a world where like, people got sick and died. Like it wasn't she hurt her space wasn't, you know, like, oh, you get sick and then someone figures it out. Or they give you this neat medicine that does something or it was like she was only mean, she grew up in a time where friends died, where people went to the hospital didn't come back for things that today you don't even think of as being dangerous. That's so interesting. I'm sure she's passed now. But that'd be very interesting to hear from somebody. Like I wonder if you were diagnosed and she just thought, Oh, we lost one.

Susan 21:48
Well, here's the irony of irony. Well, first of all, she I was her firstborn. And she had already lost a brother in infancy. Not infancy. But like toddler, a young adulthood like maybe four to leukemia, and then another brother in the Korean War, so No, she wasn't gonna let me go easily, I don't think. But um, where was I going with that? I don't know. I don't remember

Scott Benner 22:22
when you said Korean War. It made me think of mash. So my head just awful. Oh, yeah.

Susan 22:26
I remember the first episode. Like literally, I remember watching it.

Scott Benner 22:30
Yeah, I know. People don't understand that idea anymore. It's like being somewhere on a day to time to watch TV show. But yeah, but But my point just was, I wonder how much control she felt like she had probably none. And maybe she thought you were a better option than she was. Which is ridiculous. I mean, you are a parent of a parent that you know, 14 year olds are not really good at things.

Susan 22:56
Well, I was terrible. I will also say, In her defense. I was a very headstrong kid. And if someone tried I mean, she probably, you know, first of all, she she did trust my intelligence. But, you know, I don't think she had an any clue as to what she was really, you know, leaving me up to here. But I really was very headstrong. So, um, was she

Scott Benner 23:24
aware that you would get dizzy that you would like that the things that would happen to you because, you know, it just occurs to me while we're talking that you've had so much experience with this. I'm not calling you old. I'm just saying it's it's it's a nice thing like you have a depth and length of experience to be able to tell me if living prior to faster acting insulin pumps, the CGM that I did. Did you just feel like you're? I don't know, driving with your eyes closed and just waiting to hit something to turn the other direction?

Susan 23:58
In retrospect, absolutely. And Apple spec completely,

Scott Benner 24:01
how much do you think that impacted your life? I'm gonna start today by speaking about the Omni pod tubeless insulin pump. My daughter who is 17 years old has been wearing it on the pod every day since she was four every day beyond the pod, and it has been nothing but a friend through this entire time on the pod is tubeless. It is wireless. And it is lovely. Just this little pod that you where it holds the insulin right inside of it. And so it doesn't have to be connected back to some controller that's holding your insulin. It's all with you constantly. When you need to make an adjustment or give yourself insulin. You pull out a little handheld device. And you push a couple of buttons. Bada bing, bada boom, it's all done. Back in your bag back in your pocket with the device. And that's that this tubeless thing it's important because you can Shower bave swim with the Omni pod on you don't have to take it off all of the other insulin pumps that are wired like that you have to take them off to enter the water not with Omnipod isn't that convenient? It is. How about when you're playing sports or doing activities where you're worried that your tubing might get caught? You don't have that concern with an omni pod. Now you can go to Omni pod.com forward slash juicebox to find out more about this. But before you go, let me tell you this one brief story. It's crazy. And it's true. A friend of mine recently broke their finger in an insulin pump tubing accident, how I realized that is a something that's not going to happen every day. But as soon as I heard that, I thought, well, that wouldn't happen with Omni pod. No tube. Don't worry, she's okay. Omni pod.com Ford slash juice box head over and find out. If you're eligible for the free 30 day supply of the Omni pod dash insulin pump. You can also ask them to send you a free demo pod. We're just poke around the website. And if you're thinking Well, Scott, I will but maybe not today because I'm waiting for that next big thing from Omni pod. If you're thinking that you don't have to because there's no need to wait for the next big thing because with the Omni pod promise you can upgrade to Omni pods latest technologies for no additional cost as soon as they're available to you and covered by insurance terms and conditions apply. But like I said, they promise you can upgrade. So get started with Dash today. And if something different comes out later that you want Omnipod promises you can upgrade. Alright, now let me tell you about the Contour Next One blood glucose meter. It is small, easy to hold easy to use has a super bright light is incredibly accurate and offers Second Chance test strips. Honestly, that's all I should have to tell you. I should stop right there and go contour next one.com Ford slash juicebox. But I'm going to tell you more, I'm going to give you my opinion, it's super simple when it comes to blood glucose meters. In my opinion, we don't pay enough attention to the quality of the meter, the quality of the number that comes back from the test, is it accurate? It's important, and for some reason, we don't think about it, we just take whatever meter the doctor gives us. You don't have to do that. The Contour Next One blood glucose meter may be cheaper in cash than you're paying right now through your insurance for your meter. It is definitely incredibly accurate. And it offers Second Chance testing means if you touch that strip to blood, but don't get quite enough, you can go back and get more without ruining the test strip or the quality of the results. It's important so just look into it. Contour Next One comm forward slash juicebox take a couple of minutes to upgrade your gear. Do you really want to be making decisions with bad numbers? Of course not.

Susan 28:09
Tell me how much

Scott Benner 28:10
do you think that reality impacted your life?

Susan 28:13
Of not of kind of driving blind?

Scott Benner 28:17
Yeah, of the feeling that you're walking around? Knowing that at any moment, without without any kind of warning, someone might run up behind you and smack in the back of the head like do you mean like your? Is that not how it felt like it feels to me that's what it would be like but I don't

Susan 28:34
I think because you're so schooled in it your daughter was diagnosed and you made it your business because um, because we're able to write we have the internet we've got all this these tools. I you know, I? I've I think I got by by ignoring the reality you're talking about. I really do. I don't think I am. Okay. I think as much as I could, you know, and there were times when I couldn't ignore it like when I was okay, so I've heard of parents who worried that their their diabetic child shouldn't live alone. I was fearless. I moved you know, we I grew up in the suburbs of New York northern suburbs. And, you know, when it was time for me to go to school, I left high school early and you know, graduated early and went straight to New York City. And never for a moment do I remember my parents ever saying they were worried, you know, worried I wouldn't wake up one morning or worried. You know, I'm fearless. I was fearless about it. You know, not only in retrospect does it occur to me that maybe maybe they shouldn't worried or maybe I should worried. Um, so when I was your age mean, I ended up I did end up in DKA. And I ended up in the hospital. I remember the Shah of Iran was in the same hospital at the Time that dates me a bit. Um, and, you know, and then I think after that I kind of went back to how I

Scott Benner 30:08
muddled through where did the K come from? Did you stop giving yourself insulin?

Susan 30:13
No, I just must have really been out of whack. No, no, I never, you know, I never did any of those like, Oh, don't give your you know, manipulate your insulin, so you'll lose weight? I, I don't think I understood that one could even do

Scott Benner 30:29
I feel like that back then. There are some people who would just stop taking their insulin in silent protest. I never did that. Yeah. And I think it's interesting, because it is a personal protest it and if anybody, anyone listening has ever done that, who wants to come on and talk about specifically, I'd be thrilled about that. But just the idea of like, I don't want to have diabetes anymore. Let me see how long I can go without paying attention to it. That wouldn't work very well, no, no. It doesn't work well. But I don't think that it was uncommon. Or maybe it's still common for people.

Susan 31:01
I will tell you a couple of things that I think are, in retrospect, surprising. One is that I never felt sorry for myself. And I still don't, I think between my parents like I couldn't, I knew the minute I was diagnosed, I knew intrinsically that I was stuck with this for life. And so that and somehow feeling sorry for myself, didn't seem like it was gonna get me anywhere. I'm not that I didn't have depressions about other things at different parts of my life. But I've never said I it's interesting, isn't it that I've never sat around feeling sorry for myself about the diabetes. And in fact, now with some of that wisdom, and everything, I look at some of the things that diabetes has brought me in terms of my relationship with my body as blessings, like I talked about the blood, oh, that's one of the blessings of like, the fact that I'm so I did become Oh, and here's another Okay, I did become very aware of my body. As much as I wasn't like maybe in terms of diabetes, in terms of other things. What was going into my body diet wise, I became, you know, pretty, I have a baseline knowledge of nutrition. So I think one of the other things, not just the luck, and the genetics, but also the fact that I have mostly been vegetarian, or a fish eating that, you know, a pescatarian.

Scott Benner 32:32
Specifically, one of my questions, yes. What, like

Susan 32:35

17. So I do think that's helped a lot. And in fact, I used to, it used to annoy me when I used to get diabetes forecast years ago in the mail, which I did only sporadically and probably hardly ever really looked at one of the things that annoyed me about it was that I felt like they should be shouting from the rooftops that everyone should be vegetarian, like, it seemed to make so much sense to me. But you know, they didn't do that.

Scott Benner 33:01
I was in that magazine. Once. That's all I wanted to say about that.

Susan 33:05
You were in it. Oh, now I have to go look, I don't

Scott Benner 33:07
know where I just remember having somebody send me a copy and say, Look, they're talking about you in this thing. And I was like, Oh, I didn't know how to feel about that. It was, it was fun. At the time. I don't know where the magazine is now. But so you got to something on your own that I've been wondering the whole time you were talking. Because it wasn't just luck. It was you were kind of for many years, just putting in insulin eating on a schedule, but not eating really high carb or high sugar items. So the insulin was probably having a good go of it against the food, even though you're pretty blind to it, because you're just really testing that a one C every once in a while. And so your health was able to stay there. Like isn't that strange that if you would have been like a different eater, you'd have a different outcome right now.

Susan 33:59
I think that's true, but I will I can remember vividly in high school. thinking, Oh, could my blood sugar slow I can have some Haagen Dazs No, I mean, I wouldn't do that. No, in fact, it really has taken me a so long it's been such a journey. But i i In fact, I'm my mantra these days is treat your Lowe's with with you know with some juice that you can titrate because food even if you know what's on the package with then we love nutrition labels right? It doesn't it doesn't treat it the same way and it you know it can throw me off so like don't forget just have the juice don't look at it as an opportunity to have this blueberries or that you know, whatever. Whatever the name, you know, filling your own food. I'm still learning still learning so much.

Scott Benner 34:55
It's hard. It's hard. Must be hard. I should say not to have that feeling because I've seen that happen to all and where she's like, wait, I'm getting low, and she lights up. She's like, this is my shot, you know, and then she'll roll into the kitchen and just grab something that she normally wouldn't eat. I think

Susan 35:11
she's so lucky to have you to catch it on the other end. I mean, because you you're, when I first started listening to this podcast and listen to the way you in fact, when I first started listening, it confused me a little about whether it was you you had diabetes, or your daughter because you would speak about it like it was yours. But which is kind of beautiful. I never had a parent that did or anyone who did that, right. Well, I mean,

Scott Benner 35:41
it's very nice of you to say it that way. Because that's not usually how I hear back from adults with type one about it. They're like, you talk about like, you have it, you don't have it, they're mad. And I'm like, I don't think I have diabetes. And I certainly am not trying to sound like I do. Oh, you know,

Susan 35:55
people are too critical Yeah, I went I went cold turkey from Facebook a while a couple of years ago, and yeah, I don't miss it. And and I just like it's it's just a wash with people who take, you know, feel safe being critical of each other.

Scott Benner 36:13
I think all those people should try recording their conversations for five hours every week and see if they don't once or twice, speak it in a way that they don't mean. You know what I mean? Like if I yeah,

Susan 36:25
like, I try not to be too judgy

Scott Benner 36:26
you're very nice. Well, okay, so, a lots happened so far. Let's figure out what to do next you so you've kept up this eating style your whole life. Alright, and

Susan 36:40
how much except when I went to Europe at one point where I didn't want any dietary restrictions, so I ate you know, everything that everything and anything that was put in front of me not I don't remember desserts so much what I remember is eating like sausages, which I you know, I am Jewish, I did not grow up in a kosher home. I'm quite kosher now. But I had a squid, I mean, I like everything. And I do remember going to bed with bottles of Perrier, like just taking him up to bed with me. And I knew how to say I am diabetic in like three languages at the time, just so I could get, you know, get through what

Scott Benner 37:26
you needed. So your idea was just you're going to culturally experience what exists where you are?

Susan 37:32
Yeah, I just wanted to I dropped the vegetarianism for a period of time and then and then picked it up again. Later, a few years later, it really kind of it took a few years to get back to

Scott Benner 37:45
it. I'm the only one in the house that really likes fish. And then, which means I don't get fish. Do you don't mean? So I wish I lived with more people who enjoyed the same food I did.

Susan 37:56
But yeah, you should come to my house, I met Craig fish.

Scott Benner 38:00
Thank you, I would like

Susan 38:04
Jacksonville, I just

Scott Benner 38:05
you know, you find yourself in a situation where you're cooking for other people. And you're think, Oh, this isn't what I would make if I was cooking for myself. But okay, here we go.

Susan 38:14
Yeah, I I've been two of my three just moved out of the house across the country. And already the load is so much lighter. And I don't have to, you know, I've only got three different taste buds to cater to instead of five.

Scott Benner 38:30
So it's kind of nice. What's that like to have adult children move far away? That's one of my big fears.

Susan 38:38
Well, I'm, I'm very excited for them. And they've been wanting to go to LA for quite a while the only thing that stopped them was when LH locked down. And we were finally able to talk sense into them. And then of course, I made sure that they were both vaccinated before I would let them go. Other than that, you know, I raised my kids to be independent, and they neither, neither of them wanted to go to college. There's still money sitting there waiting for them. If they ever decide the booth, I have a house full of creatives. And they are both musicians. And you know, so I finally said, okay, then since I don't understand how you think you're going to land there, you know, by just looking up apartments online. Maybe one of you should come out with me and we'll try to find you an apartment so at least then I'll know where you're going to be right, right. And that's what we did. And now Now they and then they rented a Penske Truck and they drove across country.

Scott Benner 39:44
Wow. See, all of that sounds amazing. But what about the part where you don't get to talk to them or see them as frequently?

Susan 39:51
Well, I'm not to say not not gonna say I'm not going to miss them because I will. And I have my own agenda. because I've put my life on hold for many, many years to raise them. So I'm looking forward to I'm an artist that doesn't get to really do much art. And I'm really looking forward to getting back to my studio. And we are planning a trip to LA in July, so we will get to see them. And you know, and there's technology and FaceTime. And I think I think they will be calling quite a bit because they're really it's the first time on their own. Even my 22 year old he was home all this time. Yeah, since high school graduation. And so it's really the first time navigating life right, you know, in a big city in Los Angeles, and I think they'll be calling, I

Scott Benner 40:48
have to tell you the whole thing sounds right. And that's what I hope to I done the same thing I want my kids to be, you know, artists already talking about where to go, and she's still in high school. And my son makes you know, a lot of comments like, Well, when I moved to wherever I move to, but I feel like means, you know, I think sometimes you bring your kids up in a nice suburb, because you want it to be like cozy and safe and nice. And what it ends up feeling to them is boring. You know, and then they're like, Oh, let me roll out of here. And I'm excited for all that, that they would consider it that they would do it that they're not scared at all that makes me happy. I just don't want to not see them. But I'm wondering if I would get to a point like you were I'm just like, Yeah, I did my time. Like, I'm good. You know, like, I'll see him when I say him, that that kind of seems beautiful to me.

Susan 41:34
So, my lovely mother that we've talked about a couple of times already, um, she really, there was a I mean, she was she was a really good mother. And I as I get older, I feel how much of her is in me and she was a very kind person. The the part where there was a mismatch is that she just wanted you to kind of she wanted me to be demonstrative demonstratively close and loving to her. And because she didn't give me the space to come to her, she always made the all the first moves. That the headstrong kid that I was I kind of backed away. And I have never done that to my own kids because of my own experience. I've always and because also their boys, you know, there comes a time where, oh, gosh, we can't have public displays of affection. Right? So I you know, I would ask them, you know, can I have a hug? i My boys are extremely affectionate. And I think I'm so lucky. I'm so I, you know, I think it even in this moving out part, I think letting them call when they have the time and when they need to. For me, that's the way to go. Now my husband's a little different. He's the one who's who's going to have his, you know, way harder empty nest syndrome, because he's also the one who went to work every day in his not nine to five job and miss, you know, a lot of day to day interaction with them.

Scott Benner 43:19
Oh, so when they were older and decided not to go to college, that's probably the most time he got to spend with them.

Susan 43:25
Yeah, and all three of them have made that same decision. And we're talking about, you know, coming from a mother who, you know, I only got my Bachelor's, but I went to college, my husband, you know, he's, he went on and got ordination. I mean, he's, he, he's, my kids are lifelong learners, though. They're very, very, they're very, they're like, one of them's actually an autodidact. I would call him he's such a, you know, an independent learner. So, I mean, I don't worry about them, but they know that it's there as an option. The thing about college, and I think it'll help you to think about this is that it is like a halfway house to life. It's like the safe halfway house, they can be independent, they're in a safer environment than if you just let them out loose in LA, but that's what my kids want to do, and I can't live my life for them. So I hope you know your listeners don't last you for this guest but I really you know, I think they're gonna be fine.

Scott Benner 44:37
No, no, I appreciate your message. I also think that you know, everyone listening to as little kids you know, you guys can't wrap your head around it, you know that you're just one day gonna be like, Alright, go ahead, leave goodbye. But it's gonna happen. So, you know, it's not going to not happen. And

Susan 44:54
this is what we raised them for me. We raised them to be independent stand on their own two feet. Think your life out, you know, this is how I raised them anyway,

Scott Benner 45:03
oh, I've thought of my life very, you know, very simply, I just, I want to do a really good job with my kids. And then I want to hopefully have enough time to do something fun at the end. Like it just seemed to me, like, pretty basic.

Susan 45:21
I know. And I had my kids later. And I mean, I had my, I had the last two who were 18 Now, you know, I was 40 When I gave birth to them. So, I've been waiting a long time to, you know, take this maturity that I've gained, and this time on, they'll have and, like now live my life again. And I just always prayed that I will live long enough to you know, to create things that I'm proud of and feel like I'm leaving, you know, something behind and you know, all the all the art that's in my head that I'm hoping to create that it that I may I have enough time to get it out.

Scott Benner 46:02
I know how you feel. I always think that whenever whoever leaves last will leave I'll close the door backup trip, quick. bang my head on the table and Trump dead? Don't be like No, as I'm falling over, I think no, no, just no need to get a little more lucky at the end. Hey, do you have any other autoimmune issues?

Susan 46:23
Yes, I have a thyroid deficiency. I actually did recently get tested to see if it was Hashimotos or not, and it is not. And I've had that since I was 15. So it was about a year after I was diagnosed and yes, there are in my family to my both my grandmother and my mother ended up with type two diabetes after I you know, I kind of I always joked that I was ahead of the trend like everyone everyone's getting diabetes. Now I you know, I was ahead of the curve even in my own family. Um, and yeah, I think it all comes on my mom's side my my grandmother had rheumatoid arthritis. My mother ended up with something called myelofibrosis which, you know, ended up killing her but she she definitely lasted beyond what the doctors predicted. I think that's pretty much it for me

Scott Benner 47:28
and the kids are, don't have anything going on.

Susan 47:31
Um, one of my kids has GERD you know, he has reflux, but I don't think that is I don't know if that's considered autoimmune. No, they're pretty there's some allergies and we Yeah, no, they're they're pretty. Pretty good. Thank God. Yeah.

Scott Benner 47:53
Huh. esophagus itis is often caused by stomach fluid that flows back into the food pipe. The fluid contains acid which irritates the tissue. The problem is called. Wow, I'm not going to try to say that but it's GERD. An autoimmune disorder called ISO philic. Asafa giantess is also causes this condition. So guards not. But there is a condition. That's all I mean, they can cause it apparently.

Susan 48:20
Interesting. I'll have to look that up. No, I mean, there definitely runs in my family on my dad's side. My dad died of esophageal cancer and his older brother did and that doesn't run in families, but GERD can. And that's a precursor. It can cause esophageal cancer. How

Scott Benner 48:42
old was your father?

Susan 48:44
My dad was around 70. A

Scott Benner 48:48
little older I am. They found that I had a little bit of that too. So when I, when they couldn't figure out my iron thing at first, and I got you know, I don't know what they call it. But I got scoped from both sides. Right. They find lots of fun, right? Yeah, there's like, I know, it's not really it's not precancerous, but there's some sort of cells that they find on the wrong side of like your stomach in your esophagus, like so there's like some stomachs. I guess, if I'm wrong about this, I apologize. But I guess something that belongs to my stomach is in my esophagus. And then they just go back every couple years and check and the guy's like, Oh, if we find it, we'll just like, clean it out. And he's like, you know, if you pay attention to it should never cause you a problem. But it is one of those things that could lead to what what not your father apparently.

Susan 49:36
Right, right. No, you definitely have to take care of it. And scoping as fun as that is. That's I guess that's the best way and you've got a doctor who's on it. So, you know, that's, that's it. I mean, EMRs gotten scoped. And my sister's got Barrett's esophagus. My uncle, my dad's younger brother has Barrett's so I, to the best I've been scoped to, to the best of my knowledge. I Do not have the issue. But God knows. I've got enough others. So, yeah, our meeting I have, like I've taken up a lot of time here

Scott Benner 50:10
Barrett's is what? Like, I heard in the conversation, but it's like precursor to I don't remember, I maybe I should have paid closer attention. You can look it up. So it turns out in the moment, when, uh, when it was when I was going through it, my iron was so low, I couldn't pay attention. So it's much better. Yeah, well, this is, um, you know, I have to tell you that I get a lot of notes from people thanking me for having on you know, they say older people who have type one. But I just, I guess it's just sort of a, because of the way social media works, and where the sweet spot is, for the ages of people who are most commonly on social media people over 50 Get a little ignored. You know, just because they're not as common online, but I think they are common, I just don't think you hear from them as much.

Susan 51:01
I used to be, but I'm just not anymore. Um, because I want to live my life and not, you know, not through a screen so much. But I will tell you, it was social media that first made me feel less of an island. I was I was feeling so alone, one night, many years ago. And I thought to myself, someone out there's got to be, you know, writing about type one diabetes or something. And I found six until me carry sparlings. Blog. And that was like, I read it regularly for a while, because it made me feel less alone when someone else is getting their tubing stuck on, you know, on handles in the bathroom. And it was just, like, just the little things about having to live with this. I just loved it. And I felt less alone.

Scott Benner 51:55
I think her I think her blog is closed up now. I don't think she

Susan 51:59
Yeah, I know. I went back to it recently and saw that it was closed. And other things.

Scott Benner 52:05
I guess you can only write about your tubing getting caught not and she I'm joking. She heard a lot that a lot more than that. But I guess at some point, you just run your course with things. You know, I don't know her.

Susan 52:18
She also I mean, sounds like she also turned to other things. Like she's wrote poetry and wrote a book. And that's really, our blog was enormously useful. It was, you know, I didn't immerse myself in every single person writing about diabetes, like I, you know, I don't have that kind of time anyway. So I found hers. I liked it. You know, in terms of podcasts, I've done yours. And I liked it. Like, I don't listen to other ones. So there's no reason you should know Exactly exactly. Because yours is the best we know. Well, that I

Scott Benner 52:51
mean, not just that, but because how much are you gonna listen to before you're just like, Okay, there's not a lot of extra things to say, You know what? I mean? It's somebody in the end, you have to like the person who's saying it and the perspective they have and stuff like that.

Susan 53:07
Well, the pro tips are amazing, too, that just, you know, I've my primary care physicians son got diagnosed. Recently, we think they think it's type two right now, but I was like, listen to these this is what can you, like, make sure he listens to them? So

Scott Benner 53:25
yeah, I have to be honest, like that was, um, you know, making the Pro Tip series was good for me. Like, it was a growth thing. I just knew a second. The spring here and I'm hours are not pleasant. For me. It was a it was a it was a human growth thing for me. Because I, I thought, okay, the podcast is doing well. And it has these ideas. And I do think that even though I've been having conversations and things come up inside of conversations, you know, I'm seeing people have enough success with these ideas, I should put them all in one place. And, and segment them a little better, you know, be an adult, you know, and so, I was getting ready to do it. And I could have done it. And then I just thought, no, I should add Jenny to this, like, Jenny will bring a different perspective. She'll keep me, like, focused, you know, she'll be able to talk about things that I can't speak about it. So it'll be more it'll be medical and personal, like together, you know, and, you know, it's funny, like, there are people who can listen to this podcast and think that Jenny, you know, like, is Jenny's involved in the in the episode She's involved at all I mean, to say is that like, if you think of the podcast as a candy store, I own the candy store. You know, but Jenny, we're

Susan 54:55
going for your CDE cuz I just saw I always have been You know, it would be such a great fit one would think, although I know you love podcasting, but

Scott Benner 55:04
you know, so a lot of people say it to me, just like there's something in one of your emails that you said that a lot of people said to me, but I'm gonna get to that before we end. I thought of it. I'm not a book learning person. I'd be terrible at it. I don't even know if I'd pass it to be perfectly honest.

Susan 55:22
But it's so interesting that what all that you've come to is completely then been seat of your pants life. You know, it's it's been that's, that's interesting. But that's self knowledge to

Scott Benner 55:32
it all comes from what I said earlier, which I have a very deep desire to be a good parent. And this is what happened to my daughter. So yeah, this is what it needed. Like, if she would have not gotten diabetes, but decided she wanted to ride a horse. I'd know a lot about horseback riding now. Right? You know, it really is just what happened. I just if I tell you, I'm going to do something, I'm going to do it. So when I said to my wife, I want to have kids. I didn't mean like, I'd be super interested in it for a while. So this is just what happened. And then you mentioned earlier, like people have the internet, but I didn't have the internet. And it's so funny. You brought Carrie Sparling up, because back when I started a blog, I believe that it was her. Another guy named Scott and a guy named George, those were the only three diabetes bugs that I was aware of at that time. And I wasn't really aware of them. I didn't become aware of them until later, when someone said to me, because I really had like, when I was doing it, I thought Oh, my God, this is genius. Why is no one else ever done this before. But the internet was very new. And then somebody said, oh, there are other people doing it. But it wasn't 1000 people, it wasn't what it turned into eventually, which was over 4000 blogs, it was like three other people. And then mine came on and some others came on. But I was so bad at Search Engine Optimization, meaning I didn't know that it existed when I was writing. But no, you couldn't google me. So my blog grew completely word of mouth. And that ended up being why it grew slower than the other ones did. So mine was never big. Nobody ever thought anything until suddenly, one day it was. And then I learned about SEO and how to, you know, come up in a Google search. And that that broadened it. But at the same time, it only lasted a couple of years. I think of them as seasons. Isn't that funny now, a couple of years, and then people stop reading. But people were just like, I'm not gonna read your 600 word blog posts. Like, I'm not doing that, you know. And then the podcast came from that. But everything that I learned about diabetes in there, I figured out like living in it, because I didn't have anybody else to ask. And I wasn't opening up that stupid book with the Panther on the front of it. So I just, and by the way, it might be a great book, I have no idea. There's a pink panther book they used to give you and you were diagnosed. And maybe it's a terrific book. But my brain doesn't work that way. I didn't ask questions at the doctor's office, I didn't read anything, the Internet didn't really exist. So I just kept intently watching what was happening, and tried to figure out how to make it happen better or worse, or sooner or later by manipulating the insulin, and then wrote about it and brought some ideas together. And

Susan 58:38
well, you've been part of my sea change, I would say, you and the getting a, you know, because animals went out of business, I had to get a new pump. And I really looked at what was on the market. And I looked at the Omnipod. But I really felt like it was big, it felt big.

Scott Benner 58:57
First one. Yeah. But,

Susan 59:00
um, and I chose the tandem and, and getting the G six Dexcom at the same time, which I had tried in earlier iteration, but and I just felt like at the time, it was so expensive for me to do and I was still pricking my fingers all the time. So I decided I would just wait until they came out with one where I didn't have to prick my fingers. And boy howdy they did it was and it's been well, actually, I'm one of those people that it will very often quit before it's 10 days, which I wish it didn't do that but I call Dexcom all the time, but they're they're a wonderful company with really good customer service. And you know, they always replace them

Scott Benner 59:46
on enough times and describe to me that like look, this is a thing that goes on to a human being like we make the thing then your body chemistry comes in. So if it was less days or fewer days for you, my wife would be so proud of me that I didn't say less days and I caught myself fewer days for you than it does for Arden. Who by the way, where's her Dexcom? I would say 99.5% of the time, right out to the last minute stays on. Yeah. And it works great. But

Susan 1:00:12
I know I've asked them. I mean, I went one day, they actually even got me on with a nurse that's on their staff. And I said to you, it Okay. Could it be that I'm hitting scar tissue? Because I've been diabetic for so long. And so many things have gone in my abdomen? Could it be, you know, all these like we, I said, Look, if you ever decide you're going to do research on the people, you know, the chemistry of the people who it doesn't work the full 10 days for like, oh, Sign me up? I would love to do that. But yeah, they didn't have a good answer. And so I just live with it. Because it is really good technology while it's working. And it's you know, I always just hope that it doesn't poop out at a point where I really need it. Like, there have been some really bad times where I'm like, this is like, I'm walking for, you know, for the next hour, and I don't have my next call

Scott Benner 1:01:06
just goes away. Yeah. And also the,

Susan 1:01:10
I have two other pieces that have made a big difference. One is I my insurance company said I could have a, a coach through something called Vita health. And that's been really wonderful. I really campaigned to make sure that coach was a CDE. And the person I have right now knows a lot about tandem and she's she's been trained specifically in tandem. So we are working to tighten up my settings. And you know, because I know that it can be better. And then the last piece and she's just been amazing. The last piece is that I finally decided to get an Apple Watch. And having my blood sugar's on my wrist has been instead of you know, having to pull out a palm or find my phone has been really great.

Scott Benner 1:02:04
I'm really hopeful that the Dexcom g7 will go directly to Apple Watch. If that happens. Don't

Susan 1:02:10
wait. Because yeah, that was what was holding me back in one day, I just said, you know, it's not even worth it. I'll just let me just get one and they had a really good deal. So I did it.

Scott Benner 1:02:21
That's excellent. So the last thing I wanted to talk to you about was in one of your emails, Susan emails me, not frequently, but reasonably frequently more than other people. Use you asked a question that a lot of adults with type one asked me? Do you remember the one it's it's about Arden? How are you going to give this to this knowledge? Yeah.

Susan 1:02:42
How are you going to hand it off? Because you're you're very hands on? And I think you've actually answered in in a couple of your interviews.

Scott Benner 1:02:51
Yeah, I but I wondered what the if you could help me more with what the question is? Was it a physical? How are you going to put thoughts into somebody else's person? Or how are you going to let go of something you're so involved in? Which part of it? Did you mean more?

Susan 1:03:06
I don't think it was. I guess it was more about somewhere in between all of that. Like, if I know, I've heard I've since heard you speak about the two of you making decisions together? Or you'd say how many carbs do you think this is? So you actually have been trainer all along. But I think when I wrote that I thought you were maybe doing all of it, or most of it. And she was probably younger at that point, at least when I you know of the interviews I had listened to at that point. So I guess, and also knowing that I had well, I had bad training, but I had had to handle mine from a young age. I also believe I kind of think it is important for young people like I don't like when schools say you have to do it this way you have you know, and I know you don't like that either. So I think it had to do with how are you? How are you? How were you going to transition between you know, you have a holding most of the knowledge and most of the most of the control but I'm not saying control like because you're controlling. But you know, being the parent, and her starting to do that herself. And it sounds like you're already doing that.

Scott Benner 1:04:35
I'm just interested because because you have the time and the experience. And so do most people who asked the question, and so I'm always I'm interested in what it is they're concerned about or what happened to you, that makes that be your concern when you hear our dynamic? Well, I

Susan 1:04:54
did feel as I thought you know, also thinking about that later Leaving home aspect, there will come a time in the not too distant future because she's What 16 or 17 right now? Yeah. Where she, you know, she'll go off to college, presumably, but maybe not necessarily my kids sure didn't. And, but when she does, she, you know, I mean, you can still follow her, of course, but, you know, you could do a lot still, but you know, and has she ever wanted to say, you know, Dad, I got this now. I don't know. Well,

Scott Benner 1:05:32
the other night, she went out to dinner with my son and their cousins. And they all just went by themselves. And as she left, I was like, Do you need anything? And she's like, I'm good. And I say, okay, and she went out had a, you know, bar food type meal. That was I, you know, pretty high in fat. She did a good job with it. She came home, she mentioned, she's like, just see how good my Bolus was. And I was like, I did, I was great. And I said, good. I said, you know, you know that we're going to be getting hit with the fat soon. And she's like, I know, but I don't know how much to Bolus for that. I was like, Okay, well, I would do this much. And then she did. And, and, you know, it went the way it went. But I think that, in my mind, like the idea of her getting older or not being here, whichever it ends up being, it's kind of the same problem, that this is what's gonna have to happen next, like, she's gonna have to have the experiences so she can see it happen. And then I have the tools to give her. So I don't think that I expect to just download my thoughts into her. Right, I expect that she's going to learn to have diabetes the same way everybody listening learns. And except, you know, she can text the guy from the podcast, given her pretty much indifference rates

Susan 1:06:59
start and kept her so healthy for so many years. What What's it gonna feel like for you? It presuming your share your that you're still sharing, and you see what she's doing when she leaves? Like, if you see her one day, you know, not doing so well? What's that going to be like for you,

Scott Benner 1:07:22
I hope that what it'll be like is that I look at it and go, This is what I've been telling people, like, I hope I have the courage of my convictions and that point, like, then I can say, this is an experience that people need to see. And then the hope is that she'll be one of the people who doesn't want it to happen. And not one of the people just because I have this is fine, I'll let this go.

Susan 1:07:42
Well, she also knows how good it feels to, you know, to feel good to feel kind of normal, because your blood sugars are in a good range. Right? So she's not gonna like the feeling, and she'll feel it at a much lower blood sugar than some of us. Yeah,

Scott Benner 1:07:58
I mean, and then in the end, right, like, like you mentioned with your son's at the very end, if she doesn't do the right thing, I will sit her down and explain it to her until she agrees. That's my job, right? I'm not, I'm not here to be friendly. I got to make sure everybody's okay.

Susan 1:08:17
I know, that is the hardest part about parenting, right? That like, you're not the friend, you're the parent that there are times when it's rough.

Scott Benner 1:08:25
I am not going to do well, living the end of my life, see my children in any kind of like, massive failure, like, like personal like, I'm gonna think like that will make me feel like I did something wrong. And so they can, their lives can fall apart just as long as it happens after I'm dead. That's all I just

Susan 1:08:45
think you know that they Well, hopefully, it'll be small failures and the ones that they because you really do learn from the failures, of course, more than the successes. Oh, no, no, yeah, true. Isn't that it's true.

Scott Benner 1:08:56
It's 100% True. And I'm not saying they don't have things go wrong. I'm not I'm not saying that at all. I'm saying that, you know, if Arden's held up in a, in an apartment somewhere, and or a one sees 15 And she's like, I don't care. I'm going down and hard and fast. Like, I don't want to know about that.

Susan 1:09:13
No, of course. No one wants to see that. Right. Um, have you ever heard of the book The blessings of a skinny?

Scott Benner 1:09:21
No, but I believe in it. It's, uh, yeah, it's

Susan 1:09:24
really, uh, I guess I want to say, predated the whole free range parenting thing, but it really is about like life's consequences. Let it you know, parents need to, you know, need to not be helicopter parents and let life's consequences teach

Scott Benner 1:09:41
you. You can't take away the learning experiences that that you're being given every day, naturally. Because then when something goes wrong, nobody's prepared for it at all. And that and that can happen. Yeah, and that can go that can happen in ways that you can't help you know, I mean, somebody gets have, I mean if something went wrong with your life in the middle of the pandemic, for example, that'd be a difficult thing. Like even with some good calluses on your on your soul, like that still might be something harder to get through. But you gotta have a little callus. You know what I mean? You got to be a little tough, and you can't be tough when your mom's picking you up off. She's running out of the stands and picking you up off a basketball court when you're eight years old, like you got to be like, just get up. You know, I remember saying to my wife, Oh, interesting

Susan 1:10:28
about having my children move across the country, because I will not be there to pick them up. You know, short of a phone call, but I won't be there. And as they drove up, drove off in this Penske Truck as an 18 year old and a 22 year old, and I'm thinking Penske will rent to it. And he's the better draw, he's the driver with more experience than my 22 year old. And, and he, you know, and I thought to myself, here's where I just have to trust me, I just have to trust it.

Scott Benner 1:11:08
But then I am gonna bang out an email dealer, dear hurts, your business practices are horrible. And let me tell you why I just watched my son driveway with one of your products. And that kid shouldn't be given a truck.

Susan 1:11:21
Well, it's funny, and they got all the way across the country. And he really, really was enjoying the driving experience. And then we got a call yesterday, they reached LA. So that's great. And they're near the place they'll be renting. He said that we had an accident i that the map had steered me through a construction site and I needed to get out of it. And I backed up and I kind of deemed another car. They got so far, so

Scott Benner 1:11:51
close, so close. Hey, that, listen to that one, one step at a time until the young kids listening. Those math programs are ruining you. You don't even know where you're at. Okay, maybe look up, drive in a direction. See what happens if it goes wrong driving a different direction, you'll be fine. My son never knows where he's at. He's like, I don't follow the thing

Susan 1:12:12
between being like taking a drive. Like if you're easy. Do you like going out for a drive with your family or your wife just just to go for a pretty drive? Have you ever done that?

Scott Benner 1:12:23
Yeah, no, of course. Okay,

Susan 1:12:25
so you, if you're in a nice area, and it's pretty, then you're going for a drive if suddenly, the area starts looking sketchy, then your loss that's

Scott Benner 1:12:35
when you're scared, you're lost. When you're not scared, you're going for a lesson one of the things I hope to do towards the end here, I know I'm saying the end I'm about to be 50. I'm hoping to make it longer. But I'd like to get like an electric car. And Evie. And I would like to drive around and go on some road trips and see some things that I want to see and and to wait

Susan 1:12:53
for Biden to install lots of chargers. Because the problem with the Evie is that and they're wonderful. And I want one too, I've decided no more gas vehicles at all in our household. But the problem is that their range is only what the range is. So you know, I have a friend who drives one. And she said and the reason we decided to get it is that when we do go on long drives, we'll just rent the car.

Scott Benner 1:13:23
I'm counting on the Tesla network. That's what I have my fingers crossed for. That's a pretty like, like country wide network. I think you can make it almost anywhere.

Susan 1:13:32
Actually, I do know you can make it across the country on a Tesla. We have friends who did do that they moved from Jacksonville to LA and they made it across in their Tesla. I just mapped it all out. Right?

Scott Benner 1:13:45
See, and I just want to get in the car and see if we can get somewhere without killing are strangling each other. That's my goal.

Susan 1:13:53
I can't afford a Tesla. But good luck, Scott. Oh, great.

Scott Benner 1:13:56
I didn't say I don't know that. I can't either. I'm just saying like, that's what I'm what I'm leaning on here is the idea that maybe that's the way to do it. Or that maybe that they did it. Other companies will do it as well. You know what I mean? Like, like, maybe, like, I see that one of the selling points of Tesla's seems to be that they have that network. So maybe maybe other like car manufacturers or I don't know, companies will say yeah, we should build a network like that as well. Like, that's my hope is that that that that idea? Will will bear out and more people will try it and create networks like that. I would like to try an electric car. It just from a technology standpoint before I die, like it seems like the future you know,

Susan 1:14:36
oh, it's amazing technology. I'm my friend drives a Chevy Bolt. And it you know, it's she's two years in she's never had a repair and my I guess my mechanic was saying, Well, you know, there's nothing there's no belts. There's like all the things we have to repair on traditional engines. I It's just not even the it's a

Scott Benner 1:15:01
giant slot car. It's two turning wheels on an axle and these little, these electric motors, and other than that nothing and some companies are starting to talk about, and I have to go, I'm sorry, I have to jump on to something else. But some companies are starting to talk to and I talked about an idea of, I think what they call like, steer by wire, meaning that at some point in the future, your steering wheel won't even have to be connected to the front axle. It'll be like a joystick, like, you turn it, and then the computer will turn the wheels commiserate to how you're turning the wheel.

Susan 1:15:34
So interesting. I had a I have a friend who we went to the movies, this was pre pandemic, with, I don't know, one or two of my kids. And at the we walked out the movie theater, and he said and watch this a hugh is already enjoying, like showing us his new Tesla. And he said, watch this. And he had the Tesla come pick us up no driver. And that was terrifying. I mean, I just feel like if I'm standing on a street and I see a car walk go by with no driver that does that's like,

Scott Benner 1:16:05
that's the future. I just want to see the future was I was I had a computer when I was 13, which is a long time ago was one of the first computers you could buy in your home. And I want to drive an electric car before I go. And by the way, before I get so old that it feels so fast. And I'm like, I can't do this. I'm old. Like I just you know, I want to get in one time and try it before that.

Susan 1:16:23
So you'll be able to I mean, they're gonna they're gonna come way down in price and Oh, absolutely. Yeah.

Scott Benner 1:16:29
Fingers crossed. All right. This was delightful. I'm sorry, I have to rush away. But I really appreciate you doing this.

Susan 1:16:35
It was really delightful. And listen to I'm so glad. Sometimes you take care. Have a great

Scott Benner 1:16:41
day. You must be thinking right now. It's Scott ever going to run out of amazing guests to have on the Juicebox Podcast? No, I'm not. I'm not going to. This was another one. Susan Ching, paying us back with good talking. I want to thank the Contour Next One blood glucose meter. For being a sponsor on today's episode, go to contour next one.com forward slash juice box. Get yourself a good meter, not just any meter. And I'd also like to thank the pod makers of the Omni pod dash and the Omni pod promise go to Omni pod.com forward slash juice box. Find out if you're eligible for a free 30 day supply of the Omni pod dash tubeless insulin pump

thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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#589 Be the Change

Dr. Arwa Al Hamed is creating the change in Saudi Arabia that people need.

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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 589 of the Juicebox Podcast.

I had a terrific conversation with r1. Let me tell you a little bit about her. She came to the United States from Saudi Arabia. When she got to the United States, she got herself a PhD, and then moved back home, where she is now a nurse scientist, and the first pediatric nurse practitioner in the country of Saudi Arabia. I think you're gonna find that our conversation is about more than diabetes. It's about how difficult change happens. And it shines a spotlight on one person's effort to make that change. Please remember, while you're listening 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 from the United States and have type one diabetes, or from the United States, and care for someone with type one, please take just a few moments to go to T one D exchange.org. Forward slash juicebox and fill out the survey. It'll only take you less than 10 minutes. It helps people living with type one it helps research and it supports the show

this show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. Today's episode is also sponsored by touched by type one, please head over to touched by type one.org. Or, and and or find them on Facebook. And Instagram touched by type one helps people living with type one diabetes. And you may be very interested in how they do that. There are links in the show notes of your podcast player and links at juicebox podcast.com. To these and all of the sponsors.

Dr. Arwa Al Hamed 2:10
My name is Arwa Al Hamed. I am from Saudi Arabia, identify myself as a pediatric nurse practitioner. Right now I'm not practicing per se but I'm an assistant professor at the University. In the School of Nursing, where I am teaching pediatric nursing to undergrad I'm also doing clinical instructing for the pediatric nursing care course. I'm also involved in research with pediatric were affected by chronic illnesses focusing on their cognitive functions, psychosocial health, as well as transitioning and quality of life.

Scott Benner 3:00
Wow. Okay, well, how does that all happen? Let's um, how old are you?

Dr. Arwa Al Hamed 3:05
3033 Are you reaching? 34?

Scott Benner 3:08
Have you been in college since you were seven?

Dr. Arwa Al Hamed 3:13
Yeah, I think I've been in school most of my life. I practiced nursing. I own the bedside for three years. But then I immediately joined the post grad where I just came back from the US actually, two years ago. So yeah, for more information I did my master and PhD in the US. Part of it in New York and and other parts in Ohio, Cleveland. This is where I met Julia Blanchette. That's right, three,

Scott Benner 3:45
Angela has been on the show a number of times. And she introduced us. Yeah, that was really sweet. So how do you when you decide I don't want to be a bedside nurse anymore? I'm going to get a PhD. What's the what's the search, like for where to go look for it.

Dr. Arwa Al Hamed 4:02
Right? So it's actually it was not a time where I didn't want to do bedside, I would never stop doing bedside. But at that moment, in the place where I was working, it sounded to me like a dead end. And I was I found myself into studying more specializing more in academic areas, because at that time, my only option was either to continue to be only to on the bedside or do admin work, though the career path for nurses at that time was not not promising from my perspective, in terms of higher education. And I was, yeah, I was always hoping that I finished my undergrad and then proceed to Masters and PhD immediately. I was worried that continuing to be on the bedside area will prevent me from doing my master's in PhD. At that time, there was no option to go to do my masters and PhD through through the hospital. So the only option was to me is moved to academia. And there was opening and they wanted people to come and work there as teaching assistants, and then they would sponsor them to go and do their masters and PhD. So they come back and teach at that time, and we still have a big shortage in faculty in the nursing, undergraduate studies,

Scott Benner 5:38
what's the length of time you spent in the US?

Dr. Arwa Al Hamed 5:41
About seven years?

Scott Benner 5:43
Wow, by yourself? Or did you go with family?

Dr. Arwa Al Hamed 5:46
No, by myself? Of course, family we'd visit every now and then.

Scott Benner 5:50
No, but still, you moved from where you are now to? Yes. The Midwest of the United States or Vegas? Not really, wherever you are not in Ohio.

Dr. Arwa Al Hamed 5:58
I started in New York, I started New York, actually, I was very shocked with the snow. So many times I wanted to go back just because of the snow. So I'm very glad that my brother was with me. Initially, he came with me for first three weeks to just help me settle, etc. If he wasn't there at that time, I would have been in Saudi because I couldn't stand the snow. Like you didn't make sense to me. People. Oh, it's that. Yeah.

Scott Benner 6:27
The people listening? Well, no, because we started recording after we talked about it. But you started in a room that was a little noisy. And I said you know it, but is that you said it's air conditioning? And I said can you turn it off? And you were like, No, I'll die. Yo, I just know must have been? I mean, how what's the temperature outside where you are now?

Dr. Arwa Al Hamed 6:45
About 100 to 200? Yeah. And that's only the beginning.

Scott Benner 6:50
Your summer runs concurrent with ours. So you're in spring right now moving into summer?

Dr. Arwa Al Hamed 6:56
Yes, yeah. But you know, our spring is basically your summer. And then it gets different summer that you will never have, hopefully, you'll never experience. Unless you happen to visit in the summertime, which I don't recommend.

Scott Benner 7:10
You think I'll just burn up like a piece of paper, probably.

Dr. Arwa Al Hamed 7:14
Especially in the central parts of Saudi. If you go south to be nicer, it's mountainy. heli. But in in the central area. It's really, really hot and dry, and dusty. We get lots of sand storms. So you know how you guys spend most of your winter indoors. We have the same thing. But in the summertime, most of the monthly spend in the summer are indoors just because we cannot do anything without Daisy. So it's you're either in a mall, in the restaurant or in the house. Yeah, mostly indoors

Scott Benner 7:50
and the trunk of your car has seven cases of water and it just in case you stopped.

Dr. Arwa Al Hamed 7:56
Actually, you wouldn't do this because it will be very hot. It's not drinking anymore.

Scott Benner 8:02
What about in the evenings? How? How much does it cool down?

Dr. Arwa Al Hamed 8:07
Um, it's still very hard. Sometimes some nights are nicer than the others. But generally, it's not really nice. Gotcha.

Scott Benner 8:18
Wow, that sounds terrible. But I understand being scared by the snow because I hate the snow. And I was born here. So you see it and and that wind, right? Especially in New York City, people who've never been there don't know that the wind whips one way through the city. So you can be walking down one block where you're where you're shielded from it, and you're just like, Oh, this isn't so bad. Then you get to the intersection and a wall of frozen air just hits you.

Dr. Arwa Al Hamed 8:46
Right, will make you be tearful. I didn't know that kind of a phenomena. You were crying in the wind just because of how strong is the wind?

Scott Benner 8:57
Yeah, I must have been hacking a shop. Okay, so you're in? You're in New York for a while, and then you went to Ohio after that? Correct. Okay. So you get a master's and what was your PhD in?

Dr. Arwa Al Hamed 9:11
Um, so I did my masters as a pediatric nurse practitioner, and I finished and immediately got accepted in Case Western, in the in their PhD of nursing program. And my focus was basically the cognitive functions, together with some specific cognitive measures and quality of life in children who are living with chronic renal disease, or early stages of renal failure.

Scott Benner 9:44
It's interesting. Let me ask you another question. Before I get to that, though, the US health system versus what you were coming from in Saudi Arabia were their vast differences or was it fairly similar? What did you find?

Dr. Arwa Al Hamed 10:00
Okay, so right now we kind of have both systems if if I would say, yes, the Saudi has the government funded health care system, meaning that every Saudi citizen is entitled for free health care, and we have certain amount of government hospital in addition, we also have private sector like health. Health services being offered through private sector, meaning we have hospitals, private hospitals, that if you want to go pay out of your pocket, you can, you can still do that. Now, it's increasing, it seems like the country is even now giving more support to private, private companies to open and establish more hospitals, clinics, etc. So both of them are flourishing at the same time. Generally, everyone is entitled for this special also those who go to the military, or work in the military, or in the National Guard, for example, in my case, they also can have their access to their military hospitals. What happens is, because of that, still, we you're not, you're not going to get quick access to health care, unless, of course, if it's emergency emergency rooms are open, but thinking about dental health, dermatology, or like those primary health care services, we will have to wait sometimes months to get appointments. And this is where you might choose to go to private. It's not completely for specific services, if you if you need there are also the

Scott Benner 11:47
I'm sorry, for the speed of being seen, where are their quality differences as well?

Dr. Arwa Al Hamed 11:53
No, for that, mostly for the speed of being seen. I'm pretty lucky living in the US because we're still a little bit centralized, where all the good services are located in Riyadh. So you would really or in this case, the government hospitals, as well as the private hospitals offer pretty good quality. I personally would choose to go into government, because most of the government, hospitals are educational, or university hospitals. So you're being treated with very, you know, long standing. medicine, medical colleges and nursing schools, etc. With that being said, I'll also need to make clear is a few work in companies, some, some big companies, they offer also your they can offer you what you call medical insurance. And it depends on of course, in the coverage level, etc. They have levels, depending on your position, etc. And now the country is moving toward pushing all those who work in private sector to to offer all their employees

Scott Benner 13:12
will be can insurance. That's interesting.

Dr. Arwa Al Hamed 13:14
So that's why it's now it's confusing. We have both systems. Right? Well,

Scott Benner 13:18
it's also interesting that here, people are complaining about health insurance and pushing for a private, you know, a lot of people want a private answer, or excuse me a government answer where everybody's sort of covered, you know, at the same rate, and there you have that, and you're moving towards medical insurance.

Dr. Arwa Al Hamed 13:40
I don't think we're moving but I think

Scott Benner 13:43
it's becoming more prevalent.

Dr. Arwa Al Hamed 13:46
Right, it's, it's, I think it's because of the high load that the government hospitals are facing, especially from those who are not covered under military hospitals, we have many military hospital, big hospitals. So the load will for the other like, citizens will will fall on to some big government hospitals, where you will have to wait, sometimes months, sometimes years to do procedures. And I think one strategy is that the government is trying to support more entrepreneurs to open private hospitals and then we will help you paying for for for insurance, just make sure that everyone has at least an option. So they don't have to wait months and months for the government. Right? You know what I mean? So you will still be entitled for the government service, but instead of waiting, you can still have other options.

Scott Benner 14:47
Okay. Now, what about the standards of care? Did they vary between there and here or were they pretty similar?

Dr. Arwa Al Hamed 14:54
Right, many hospitals in Riyadh and in Jeddah, the two Me in large cities in Saudi and the East in the East Coast, we have an another two big cities. Most of the hospitals there are JCI accredited, I think joint commission accredited most of them. So I'm assuming most of the hospitals follow the US standards, specifically the military hospitals. Surprisingly, a lot of them worked or collaborated with, develop what United State developers like, for example, in my case, in my hospital, they they collaborated with some companies from the US early on to establish those standards, even in terms of equipment, etc.

Scott Benner 15:53
What have been in diabetes, specifically, if you're if you're diagnosed there today, what happens do you get, you don't get regular and NPH insulin you get? You get modern insulins, right, like some version of Novolog, Humalog, that kind of stuff. Correct? Right? And do people start off with injections? Because I get a lot of letters from people living in your area? Asking me if I know how to get CGM and insulin pumps there, that actually happens frequently. Are they not readily available?

Dr. Arwa Al Hamed 16:28
Um, they are. But again, I would still consider, well, it's very important to mention that still services are mostly, like heavily provided in central areas or big cities. So maybe you will hear that from residents have rural areas or areas far away from the central areas or from the large cities in the kingdom. The other thing? I think, yes, it depends on where they are from, or that they're, depending on the supply, or if they got those new equipments. I also noticed some people are a little bit afraid of the pumps. In my family, a few of my cousins actually have type one diabetes. And two of them, actually, their parents are not very comfortable having the pumps, so they still prefer the injections. But they are still they're here. They're offered. And I think it's based on preference.

Scott Benner 17:39
Yeah, I actually know a few families that fly to America buy products and cash and flight back. And maybe, maybe things are changed since even I've heard those stories. That's a it's, I mean, it makes sense to that, as you get further away from population centers. Can't care. I don't know if it slips or if maybe just the ideas haven't gotten out. Because there's fewer people. And you know, they don't get a chance to see each other using them. I would also wonder how you keep insulin cool. They're like, yeah, they

Dr. Arwa Al Hamed 18:15
will it same, same thing. Same thing applies to the US in the summertime, they will always move with their small refrigerators with them. Okay. All right. But we don't do lots of summer activity in the summer time. So unlike in the US, for example, in the US, you would be worried right about kids going camping or going for the beach or going for sports. I'm very, very limited. Things we do out during the summertime, so they're always in the refrigerator.

Scott Benner 18:45
has these.

Dr. Arwa Al Hamed 18:47
Yeah, referring back to the to the pump, over the one I give wrong information. There might be other factors that I'm not only pretty aware of. So yeah, I'm just not one to be honest enough. I might not be very familiar with all the other factors.

Scott Benner 19:06
Okay. No, I appreciate that. I just, I'm just interested in your perspective. So when when you get your PhD, I guess that kind of drives your, your your focus moving forward. So you come home, was it always the plan to come home and practice? Yes, it was. So you come home with an eye on helping with the cognitive issues. And you're you're in this one focus right now. Is that right? Or do you move outside of it as well?

Dr. Arwa Al Hamed 19:33
I know a little bit outside like for example, lately. Actually, Julius specifically inspired me to look at that variable, where transition specifically that we don't have transition clinic that transition clinic by itself is a new idea. In some specialties they started applying them, for example in rheumatology They already have transition clinics to treat kids who are moving from childhood into adulthood. But for type one diabetes, despite the high the high prevalence here, they don't. And what's also concerning to me compared to the US is that we consider children as as to be treated in the pediatric clinic. If they are from one day old until 14 years old, only. Unlike in the US, where they can continue with the pediatrician until they are 21. I'm not wrong. We're 24

Scott Benner 20:44
You can stay with your knowledge here. I'm sorry. If you're in college, you can stay with your nutrition till you've graduated. I'm sorry, you broke up,

Dr. Arwa Al Hamed 20:55
right? No, I'm here. He only until 14 Once they get into it.

Scott Benner 21:07
Or why you just disappeared? We lost our Yes, I'm back to the dog get you? Yes. Yeah. I'm okay. No, no, it's fine. Yeah.

Dr. Arwa Al Hamed 21:22
So that was concerning to me. Because I was wondering what happened to those kids? Do we just send them to the adults? area? Starting from 50 years old? How about if they're, like, even if you're considering them physically at puberty? In terms of mental or cognitive? or you're not? You don't know yet, you know, even deciding who's mature and who's not takes a psychologist to review that it's right. So they just at 14 years old, they just discharged from the pediatric area, and they send it to adults, where everything is different, their approach is different providers different and the family should not be involved that much, and all that has an influence on their compliance.

Scott Benner 22:10
Can I? So is that cultural that age cut off? Or is that? Yeah, it is?

Dr. Arwa Al Hamed 22:17
It's, it's a Yeah, because I'm not sure if you're familiar we consider for a boy who was at puberty, or a girl who was at puberty, they're considered already mature. Oh, so you have to, for a female she has to cover up from other male who are not from her family? And for the for the male, he cannot be cannot be with other females who are not among his family, or they're not? They shouldn't they should cover up. I see. So in that case, we regularly admit, admit them in pediatric units. Of course, that was mostly before we had shared rooms, etc. So usually the sitters or the those who are admitted with the patient are usually mothers. So for this patient to be boy at puberty was very inconvenient. So usually they they put that cutoff limit. So they it's for segregation purpose is to help segregation.

Scott Benner 23:20
Make sure I understand continued, yeah, make sure I understand if my son was diagnosed, right as he hit puberty in that age, then my wife could not go with him to the hospital. Because there'd be a commingling of genders is

Dr. Arwa Al Hamed 23:39
no no, no. admission for admission, your jewelry for convenience, but no role to prevent anything. No, they can still go and do everything together. But I mean, for convenience purposes, they organize it that way.

Scott Benner 23:51
So this one cultural idea, leads leads to separating, like putting children into adult care was something that's really confusing that they're probably not ready for it. Because at that age, I mean, I have to be honest, at that age, I was like, stupid. I didn't you know, I didn't understand anything and I had no context for anything still. I guess I didn't grow up where where these kids did so maybe I would have been more mature at that age. I'm not sure. But that's incredibly interesting. So you said that the care differs between the segment of children in the segment of adults how does how does the idea of carrot change

Dr. Arwa Al Hamed 24:30
like for example consider how the care in in pediatric clinics for example is always family centered right? You're not gonna be able to access the child without his parents in and most of the cases are usually mothers. But now with with moving to adulthood, your family or or not really The focus you are the focus now your should be all of a sudden, the one who is taking care of all the details, including scheduling and compliance and not only prescribe administering your medication, but following up all these different appointments and supplies, etc. So the approach is different. Now you're not only communicating, you used to communicate with the whole family, but with adult you mostly communicate with the patient. How does that work? And the other thing

Scott Benner 25:35
I like? How does that end up working out? Like, is that a, like a? Okay, rock solid? Everybody's doing really well and super healthy? Or is it problematic? Somewhere in between?

Dr. Arwa Al Hamed 25:47
It's a it's actually a very good question. Because when I came back, and I noticed that I, I communicate with some of the endocrinologist, we work with the pediatric endocrine, and they, they told me that they they tweaked a little bit within this system just to keep their patients with them until the physician feels very comfortable. discharging the child from pediatric to adult. Which is to me it's nice, but at the same time, it takes a lot of effort from the physician side to our would it go assess the

Scott Benner 26:27
kids, right? Yeah.

Dr. Arwa Al Hamed 26:29
And yeah, they still have to what to call it compromise that it's a bit and talk with with sometimes admin people or you know, hospital admin people, because they they keep pushing for that, like, you have to move this child to adulthood he's he's already in the system, he's 14 You need to move into other then they will go and a little bit Jani advocate for their patient to just keep them under their care until they feel comfortable. Making sure that the child started to be independent, start administering his medication or following up his coming at least to the clinic, sometimes alone, etc. And once they feel ready, they, they they transferred them, but it's not always possible. Sometimes you will have to do that.

Scott Benner 27:21
What are a one seagulls there?

Dr. Arwa Al Hamed 27:25
Huh, I don't have an accurate number. But I'm assuming

Scott Benner 27:31
Well, what would you ask some what would you hope someone wish was aiming for? If you were if you were I would

Dr. Arwa Al Hamed 27:41
say six 6.5? I would say okay, that's fine. Five

Scott Benner 27:46
is diet there. There any cultural differences in foods that make type one management easier or more difficult?

Dr. Arwa Al Hamed 27:55
Um, I would say yes, it would make it more difficult just because the, the culture or the lifestyle here is is sedentary a little bit because especially that the weather people are very reluctant to go out with that. Weather, especially in the summertime. And summertime, or summer weather specifically coincides with summer vacation, which is quite long. And not every not all kids get to travel or do activities. Most of them are indoors. gyms and look or to to to participate in a gym or something indoor usually costs money. It's not possible for all families to offer that for all their kids. So I would assume the the diets with all the options, we have people like dessert here, people like variety of food, we have vary. Now the fast food thing is, is becoming an expert here. Like making all sorts of us fast food, but now we no longer have changed restaurant or we do but we're very becoming very, like good at making our own local restaurant or fast food and especially kids that they're like adolescents or, you know, they cannot resist all these options, especially in the summertime. So I'm assuming it would be a little bit difficult. I personally noticed that when I came back, people eat lots of snacks, unhealthy snacks here compared to in other countries where snacks are limited here. They have a lot of options. It's very tempting. We're very very good at making dessert here. Very, very good, like insanely good. You're welcome by the way.

Scott Benner 29:50
We We've exported all of our best goods to you to learn from McDonald's. Congratulations. That's terrible. Can I ask just from a personal like standpoint? What? Is there anything you miss about the US? Either professionally or personally a lot.

Dr. Arwa Al Hamed 30:15
Um, I miss a lot. I miss the weather, I miss the green life, I get very attached to the lifestyle where I do go out during the summer all the time to parks, mountains, lakes, rivers, I miss all this, to be honest with you. I missed the diversity very much. I kind of got addicted to it. So now every time I go out or socialize, I get bored very quickly, because people are mostly the same here. There's from the same culture from the same place. We you know, we don't have a lot of we don't have a strong immigration history. We do have expats coming to work here, but not immigration, per se. So people don't end up mixing and being just one. One country. No, we still have a lot of people coming to work, but not so much mixing. And unless you make active efforts to do that, which I ended up doing, I ended up joining meetup groups as if I'm still in a new country, just to just to fill that need of meeting new people or diverse people every time. That's interesting.

Scott Benner 31:26
Yeah, I guess you ask a question. And once it gets answered the same way, four or five times in a row? Not a lot of excitement about asking it again.

Dr. Arwa Al Hamed 31:33
Exactly. Yeah, exactly. It was always interesting here to conversate with people and you'll always hear different religion, different culture, different ethnic background, there are different interests to like people who usually do the same thing that a majority of people are kind of similar. And even there, and you know, we're very social oriented. Society here, we still like to fit in. And it's, it's now it's changing at least. But still like the overall picture is that everyone looks the same talks, the same, does the same thing. So on

Scott Benner 32:23
you made me think of earlier, I kind of had a light bulb go off in my head when you said people are either at home or in the mall. And it reminded me of a time I visited the Dominican Republic, and there was this mall. And it just felt like everyone was in it. It was it was the busiest place I've ever seen in my life. And it never occurred to me that it was about getting out of the hot weather. Until Ryan just said that. And the the idea of diversity, that's not going to change there anytime soon, I would imagine.

Dr. Arwa Al Hamed 32:56
It's actually changing in Riyadh, specifically in VR, but now is becoming like a very big hub for all new companies and new investments and with with most of them the vision of 2030. All this is they're attracting more businesses to open and beyond. So a lot of people coming to work in Riyadh every year, right? It's interesting. Yes, it's very interesting. Compared to before, now, I see more and more opening up. If you go out now you see a lot of people from different places, going out more before with with COVID. And all the travelers restriction, people would come work and then they travel, you would rarely see them coming out in the weekend or coming to entertain in Riyadh. But now with the COVID restriction, I came to realize how much diversity we have in Riyadh. Because now with all the travel restriction, people ended up spending their weekends you're spending their vacations and be out. So you start seeing people from different countries and places in Riyadh, some of them are and I think you and I think it's going to get even more diverse because the plan is to have like, more foreign companies opening their headquarters and beyond. So I'm expecting to see more and more that's

Scott Benner 34:29
like that. That's probably particularly exciting for someone like you who's lived somewhere that's more diverse.

Dr. Arwa Al Hamed 34:36
It is I'm enjoying it very much. i It's true. You don't see any changes at the level of the society like comparing it to people who would be living here for years and years changing even though like building block of the country itself, but you will still see six to see changes people opening up more now and and being more accepting of differences where now you don't have to do active effort to look like everyone else because you start being more than welcome then accepted the way you are. So I'm enjoying it for now.

Scott Benner 35:19
Yeah, I would be excited. Are you married? I didn't ask. No, I'm not. I have no idea what's happening right now. Siri just started talking for some reason that really messed with my head hasn't happened.

Dr. Arwa Al Hamed 35:35
Maybe she wasn't happy with the question.

Scott Benner 35:37
Yeah, I gotta try harder. I marriage question I couldn't hear with my headphones on. Do you think it was? Do you think my speaker just started going? Like, come on, buddy? Try harder? No, I just was. I was just interested. So your your are you? Is that something you're interested in? Marriage? Yeah. Is it uncommon for you to feel that way at your age living there it is.

Dr. Arwa Al Hamed 36:02
Mostly, most of people in my age are married and have kids, including, like me, whether despite of the gender, but I think especially living in Riyadh, again, I will keep pointing back to Riyadh is because even in the other, not only the becoming the hub for all the new jobs and for all career, nice career pathways, people would move to Riyadh, from different cities, even in in the kingdom. So you start meeting people at their 30s, who marriage is not in their priority, because career is their priority, mostly. So now it's becoming common that you see people in my age, or not married and they're okay. They're, they're not desperately looking forward, or they're not facing pressure from the family to get married. It's becoming normal, just another normal. I think it's mainly because of carrier. Most of the people I meet who are in my age and are not married, they're always very passionate about their carrier what they're doing.

Scott Benner 37:28
So it basically breaks down some lines, like you're gonna build a family or you're going to or build a career but it doesn't those two don't mesh well together. Like the idea of two really career motivated people living together doesn't happen quite as much. No, it is not for you.

Dr. Arwa Al Hamed 37:49
But I think it's very interesting. If we start talking about this, I will be talking for like, two more hours. I think, I think what happened is with this transition, that the the to the sudden and quick changes that happened in Saudi in terms of society, and economy, of course, economy has been okay all the time. But now is there a major society changes for example, now, we were driving before we didn't, and all the breaking of the segregation that's happening now in many places, et cetera. So there's major dramatic societal changes. What happened is up in Wilson, their 30s. There, they're still there in between. They're not from those who are before the generation who are older or they're not even the current generation who are already experiencing these changes, that they don't feel anything different for us or people in my age. We're facing lots of conflicting ideas. We continue to compare what we see now compared to what we've been taught to what venues to do or what they've been prevented from doing etc. Compared to now where everything is different. So I think what happens is those who cope very well and adjust quickly and and fit in they they might they need to find someone who's that similar to them. Who who's adjusting well and adopting all those new changes without feeling any conflict, any internal conflict. And and here comes a problem. I think girls are doing much much better in this compared to guys in our age. Where they still not sure if they like what they see now and if they're okay to completely adjust to what they see and they're still stuck to some old Ideas are old about, you know about gender about what to expect from a wife what to expect from marriage, all this? Right? Well, I think I'm in that space and that gap in that space. Yeah.

Scott Benner 40:13
Yeah. I mean, listen, it makes sense, right? Because when, when human rights and civil rights and things like that get more and more available for people, it really does end up benefiting women. exponentially, right? Where, right? Whereas men are like, Wait, so then yes, there's no lady that's gonna clean this stuff and make me food. But you don't like me? You don't get quite the same deal if you're on the other side of it. So that makes 100% sense. And so people are holding out, they're like, I wonder what life could be. I'm gonna wait and make something cool, right?

Dr. Arwa Al Hamed 40:50
Yes, yeah, some of them are actually waiting to be stuck

Scott Benner 40:53
inside the air conditioning. Because

Dr. Arwa Al Hamed 40:57
a lot of girls in Saudi know, they don't want to wait, they feel that they spent so many years in that old mentality. And they don't want that anymore. So they're very eager to live their life to their maximum capabilities and maximum potentials, either at work, or even in social life. So they always have plans when I meet girls in my age, it's, it's, it's very surprising. And interesting, because most of them are in the same page. Most of them, they just want to enjoy all those privileges that we have right now. can travel anytime, anywhere. We can do any hobby that you wanted before, and was not an option. For example, music, playing instruments, you can only do that at your home or practice it with your family, but never something that you can work on or be have a carrier or something that you can make a business out of it. Well, everything is just all of a sudden open. It's kind of distracting even from looking for marriage, believe it or not, you

Scott Benner 41:58
know what it sounds like? It sounds like Netflix for life. Like there's so many. You just scroll and scroll and scroll and never watch anything. You're just like, there's too much to do. I can't pick. But that makes sense, though. And it kind of sounds exciting. What what do you think, started that kind of boom? Was there one cultural shift that moved everything in a different direction?

Dr. Arwa Al Hamed 42:23
I think there are so many. But for example, I give you a very, very simple example. Some of the, I think king king, King Abdullah, previously he was Prince Abdullah Ahmed. And then I think probably I'm not sure if you're familiar with all the royal family members. But King Abdullah, for example, he started a move that was I think, about 15 years ago, where they started the studying abroad program. They have, they created a program where they sponsors students with high GPAs starting from like fifth when they finish high school. And they can sparse they sponsor them for studying abroad. Programs in different countries started with the US, Canada, UK, and many others. But the three main big countries that we used to go is the US, Canada and the UK. It started a long time ago about 15 or 20 years ago, I think the plan would from what you see is that they want to prepare a generation of people who are let's say, Western, educated, they're, they're, they're used to seeing different cultures because think about we've been a little bit Yani introvert for some time, in terms of like exposing to different cultures, different races of religion. So I think the plan was is to not only make them get Western education, but make them mix with other cultures or other religions and and then when they come back, they're more ready to absorb the new changes or that are already happening. So I think that worked for big part of what's happening because those students when they came back, most of them now are the leaders and most of them that say ministries, all the government services or the big, big companies in Saudi Arabia. So I'm assuming that in part worked. And then, of course, the new Prince Mohammed bin Salman, with that knew, of course, that's the first and the only time we ever had a young leader, that young leader and that kind of changed everything because he is I think he has chords to change things that others were very reluctant to change us. They were very afraid to change those social things that were fully yeah thought about it as religion when in fact it wasn't. I think he was just courageous enough to start pushing for those changes that has been already there. But it would, no one has the like, really the chords to apply them or implement them.

Scott Benner 45:35
Right? I have to admit, the first time that I saw in the news that it was a big deal that a woman was driving a car. I was I stopped me for a second I thought, Wait, women couldn't drive cars. Like I didn't. That was not something it even occurred to me. But this is it's kind of fascinating because you're, you're transitioning, but that transition still has to happen culturally and slowly to some degree like you can't I imagine you can't just like if you could just magically flip a switch and move everybody into a different space. It would probably short circuit most people's minds, right. Like it's it's that different from what they're accustomed to and what they were expecting growing up. Mm hmm. Wow, that's fascinating. Yeah,

Dr. Arwa Al Hamed 46:17
but because lots of people don't realize that just give me a minute.

Scott Benner 46:27
No, you're fine. Do we have to shoot somebody away?

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Dr. Arwa Al Hamed 47:32
Yeah, my brother is just looking for my car keys. So yeah, it's people don't realize that we didn't wait for driving to to start developing very quick. Well,

Scott Benner 47:55
are you broke? Are you back? You're not back. Tell me when you can hear me again. Hello, hello. Oops.

Dr. Arwa Al Hamed 48:11
Sorry, mixed environment.

Scott Benner 48:13
I'm so sorry. Hey, I gotta cut you off. You. You were gone for about 20 seconds. So I apologize. But you the last thing I heard you say was it didn't just happen with driving? Yes. Yeah. Okay. I'm sorry.

Dr. Arwa Al Hamed 48:27
Yeah. So I'm saying it didn't just happen when we started driving, but it would it started. Very long time ago. We had women working in, in businesses in medicine, and academia, their Dean's, they're working everywhere. From very long time ago, my mom was one of them. And then driving was a very, very minor compared to what we were empowered to do. Long time ago. What was going on is that for some reason, they associated driving with some religious restrictions, which wasn't a right. Connection. It was never a true connection that was made, right? It was very easy for it to like, stay there. Don't touch it. Okay, that's fine. Just keep it it's not really preventing us from doing anything. We can still study, we can still travel, we can still go to the US and do PhD, we can come back and be prime ministers, etc. So it was never a barrier. But

Scott Benner 49:47
if I had to go Yeah. All right. If I had to guess it sounds like one of those things that men who wanted you to wash their clothes and make them food thought, whoo. If we start letting women drive, they're going to get out in the world and figure out it's not as much fun to do my laundry as I told them it was, doesn't that have like sort of like that just like the idea of you restrict somebody travel or their ability to see other people or interact with other people who have different ideas, then you restrict their ability to dream those things. And then you can kind of it's easier to control them than I would imagine.

Dr. Arwa Al Hamed 50:19
Yeah, yeah, of course. Yeah. Although we we wasn't just about like watching the laundry. It's more like, it's more deeper than that. But yeah, it's 100%. True. I, I get I still meet people are compensated with people who would still feel threatened by by having their wife striving for the same exact reason, although they weren't admitted. He would tell you Oh, no, I'm afraid it's too crazy out there. People don't drive nicely, oh, I don't have money to buy another car. They will, they will use all these other excuses. But if you start pushing and pushing and pushing here come to the, to this true, true idea behind it is that it's such Right,

Scott Benner 51:05
yeah, you get you get frightened that people will see a world and think, Wow, this is better than the world I live in. And not come back. Yeah, I mean, and when you're, when you're so accustomed to that being the truth. I mean, giving it away, if you look at it from the male perspective, like just giving it away, must be it must be difficult. You know, I mean, I'm, I'm 50. And in America, you know, I was I was I became a stay at home father in my 20s. It was incredibly uncommon at that time, when I when I did it. And it was looked at unfavorably by most of the older people in my life, they mostly looked at me like, Oh, he's taking advantage of her. And he should be working. And they didn't understand that we thought that this was a the best balance for us, you know, and the way we can make things work. And I will tell you that there have been times when I'm growing up, where I think I love the way my life worked out. But you do wonder sometime like what was it like to, you know, 1950s America, come home and have a bunch of people just treating you like a king walking through the door? You know what I mean? Like, that's never happened to me in my entire life. I don't think I would want that. But might have been cool. Cool to see it one time just to see what it was like, you know, my example about the laundry is because I'm the one that does the laundry at the house. And I want to get away from it. Yeah, I hate doing the laundry. But that's that's not the point. The point is that you guys are making these amazing leaps. And are they? Are they transitioning? I would think not just in the medicine, but everywhere because you're getting new ideas. People have been exposed to more, I mean, you you might well see a real, a real Renaissance.

Dr. Arwa Al Hamed 52:55
Right, actually, with medicine, the medicine started to advance in the country, way, way, way, way back. It was actually one of the few specialties that the country didn't really, or the country sponsored all endeavors related to medicine, from the early ages of this country. So that's why if you compare hospitals in Saudi Arabia, specifically as compared to the other Middle Eastern countries, even other Gulf countries, we have some of the best physicians and hospitals I'm not saying this because I'm Saudi, but this because really, really it's it's it's true. They spend a lot of money in this in the country invested a lot in most of them are prepared either in Canada, Germany, UK, US, and most of them, they've spent their fellowship there. We still collaborating with big hospitals, and big. I'm not sure how you call those kind of companies, but those who develop hospitals. Yeah. So yeah, we a lot of ongoing businesses that started decades ago.

Scott Benner 54:16
Yeah, they're like private for profit hospitals. Hmm. Right. Exactly. Yeah. Well, I just had a question on the tip my tongue and just fell right out of my head. Damn. Shoot, shoot, shoot, shoot, shoot, where did it go?

Dr. Arwa Al Hamed 54:32
Say you're asking about the transition? Yeah,

Scott Benner 54:35
I'm sorry. I blanked out for a second. But yeah, um, the, the idea I'm wondering about is, will like, at what point do we see the information that was brought back to other places, refined by other places, and built on top of like, that's because I don't think that diabetes care. In the US is particularly finished, right? It's better than it was. But you can still go to plenty of places who are operating like it's 10 or 15 years ago. And so my expectation, well, I guess it's my hope is that the diabetes care will become more, two way, meaning people won't go into doctors offices and just be told, Do this, do this, do this. And then you come back, and we'll measure it again later. And we'll change some things. Like I want to see people in a position of power in a position to say, I'm going to make a change to my Basal insulin, or I'm going to, you know, I'm going to come to realize that this meal needs more insulin than this other meal, and not just use some carb ratio, and just, you know, let my blood sugar be high for four or five hours afterwards. And I'm wondering if this spreading of information won't in time lead to people understanding that better? But I mean, do you think people understand that they need to be more proactive with diabetes care? Or do you think that that understanding exists some places and not others?

Dr. Arwa Al Hamed 56:13
What what's good about type one diabetes, specifically, that it's affecting the, unfortunately, at least considering that the prevalence is increasing with recently compared to before, I think it's being affecting the gender, the new generation, who are very, let's say, first of all, they're tech savvy, most of them, they are, they are being raised differently than kids before. So most of them, they, they do things because they want to do what they need to be convinced the you cannot tell them what to do anymore. You need to convince them why they need to do things. So this type of mentality or mindset, is, will make me think that it's possible. Because you see them now I, I interact with a lot of like, let's say, school, school aged school age, kids to dollar since they they're very mature compared to we when we were at their age, and they're very independent, more getting there, they're given more opportunities to practice their independence compared to us back in the days, specifically girls, for example, I was not, I was never allowed to go to pointment alone or everything, my mom would be very worried. So she prepared to go with me. Now, they do everything alone. So I don't I think that this was tacitly tait the implementation of like self care of all the principles of self care or individualized care. However, what I think still might be a barrier is the approach from medicine itself. The like, I think health care providers are not confident enough that those kids are able to do that. And that's why they maybe insist on depending on the parents, so you know, that's this age generation difference where you as an as an adult don't think that they know enough, or they don't trust them enough. But unless if we start adopting this new mentality that no, this new generation is able to do it, just simply because they are raised differently. They've been allowed to experience everything they've been allowed to do do things alone, so they are stronger than when we were at their age. So I think the change needs to start from that provider itself.

Scott Benner 59:05
It's exciting, isn't it to see a generation of people who are less restricted than the one before them, and to see what they kind of do with it. And, you know, obviously, everyone doesn't take it in a great direction, but some people really do. And that idea of self care for medicine really translates to self care for a person in total, just their ideas and their goals and their focuses. Everything is within their control, I guess, and no one's telling you what to do with it. So they're able to explore directions and your people are going to find people are going to find lives that they just never would have been able to find in the past, because they felt so I mean, it's not even that you just felt so much but your parents were scared, like you said, and they would insist Still that fear on you whether that fear was safety, or religion or government or whatever it ends up being, you know, you can't do that. Or we don't do this. We can't say this. We can't go here. I mean, you can't play a flute outside of your house. And now that just, I'm super excited about where, where it's heading. I think this is the a very exciting generation of people to pay attention to. I've always thought that I was interested that you said it to. So yeah, they're

Dr. Arwa Al Hamed 1:00:25
very, very, very self determined for their age, honestly.

Scott Benner 1:00:29
Yeah. It's crazy. My daughter made 35 If you talk to her, and she's exactly she's 16.

Dr. Arwa Al Hamed 1:00:34
Yeah. Yeah, like, if you notice, especially now, these days, for example, I have three brothers. One of them is 40. Of course, they're all adults, but they all can spend time with the friends from all different age groups, like they all together that they have 10 years different from each other. But when they gather with their friends, they have friends from all age groups, and they enjoy their time they travel together, they do things and look, wow, before we didn't do that, we would stick to people at our age. Yeah, even for me, when I when I gather with with my family, we can spend hours and hours conversating with 16 years old, and you would never feel like she's only 16

Scott Benner 1:01:22
I interviewed three girls who were like 1315 and 17. I interviewed them together. They're these three friends who live on this island together. And they all have diabetes. So I was like, I'll just, you know, I never done an interview with that many people before. And it was a little it felt like hectic to me sometimes. But when I got to the end, I thought, huh, that's crazy. I'm, I could be their parents. And we just had a very normal conversation. It was, it was fascinating. Three girls taking care of their diabetes that you know, 15 I think 1617 Like, whatever they were there, they're young, you know, and they just didn't come off as young. Like, don't get me wrong, they're still, you know, they're a little giggly sometimes. And you know, they maybe don't follow sarcasm as well as an older person would or stuff like that. But they're just they have thoughtful, they know who they are. I guess that's really what it ends up being is you ask them a question. And they know the answer. Because they're connected to themselves. They're not just these robots that their parents are controlling through life. They're their autonomous people, and is absolutely lovely, you know, really great, right? I don't.

Dr. Arwa Al Hamed 1:02:34
So, again, good. Going back to the transition. Yeah, I think maybe they are better off compared to other generation. But I think still, right, that the purpose of transition clinics, sometimes it's really not only for the patient themselves, but really, it's for the provider to, to prepare for this transition. Because we we don't have some somewhere in the middle, we either have a pediatric who's very nice, and who will involve the whole family. And then all of a sudden, we will have an adult endocrinologist who is used to older people, and he was just asked specific questions, and he's not going to dig deeper with the patient and just tell them a list of things that they need to do. And then they just go home.

Scott Benner 1:03:25
Yeah, that's a shame.

Dr. Arwa Al Hamed 1:03:28
Hey, but for this specific generation that we just said, I think, physician physicians or, let's say, providers in general, whether professional nurse practitioners, they need to be prepared to trust them. Or at least to be able to assess those kids from different standards or standpoint, not just use our our own ideas that oh, they're they're young, by default. We shouldn't trust them. Or by default, they shouldn't be controlling their condition 100%, etc.

Scott Benner 1:04:07
Yeah, I mean, there are people who are able to do things that their age wouldn't indicate sometimes, and those people shouldn't be left behind. Because you're like, Oh, well, they're, they're 13 they don't understand that I've had kids come on the show, that are astonishingly good at taking care of their diabetes. And they're, they're young, I have one coming up soon, a girl living in Russia, and she's young and found the podcast on her own and figured everything out by herself. It's fascinating, you know, but it's really, really cool. And I think that that shouldn't be taken from people like everyone's not going to get it on a deeper level, but everybody should have the opportunity to try. You know, that's, um, it seems like the old way of thinking about it was most of you aren't gonna understand this. So I'm not going to bother explaining it to anybody. You know, answer my questions. The dials us a little more here. That's it. That's, um, and now there's glucose sensing technology, which just opens your eyes to what's really happening with your blood sugar. Fascinating, you know? Yeah. So what is your goal? Like, what do you, you got all this education, you came home, you're living a, you know, a different lifestyle in Saudi than probably, you know, two generations ago if your family did? What what are you going to do with everything you've amassed? What is your? What is your hope?

Dr. Arwa Al Hamed 1:05:31
Okay. Two big questions of carrier? Yeah, it's a big question. It's a very big question. And then it also keeps changing, I think, because sometimes what you come back, hoping that you want to do is really not feasible for probably not, not going to say not possible, but it will might take you years and years to even do 10% of it. But so you show you I think, what what parts of resilience mean is even your goals, we need to keep modifying them, not necessarily lowering your expectation of yourself. But know, maybe you now have a better perspective of how is it really going on here? Because I may, I may had ideas about what I want to do. But when you come here and experience, life, here are the flow of things and what exactly needed, you might start realizing that there are other other areas that needs to be worked on as compared to what you had in your mind. Or instead of this one, this is more important for the country at this time, specifically. So this is what's been happening with me is that I've been trying to find the right way to reach or not reach, because I don't think there should be one goal that you reach it, and then you're done. No, it's always changing random underneath. So the plan is, when I did my PhD, I focused on cognitive functioning, and how it affects their school performance. And then eventually, their chances of getting accepted in colleges and then getting good jobs for patients with renal failure. But now I'm trying to expand it more on other kids with chronic illnesses. Because what happened, especially with renal, or children with renal failure, although it's considerably a rare condition, especially in developed countries, it's still the focus in their care is mainly stabilizing them. Physiologically, at least, or maintaining Yoni is at least, to stay alive and decrease mortality, decrease morbidity, etc. But the advancement in career or schooling is not a priority at all. Which is I understand why it started like that. But I also don't understand why it continued. Of course, initially, we will just want to make sure they survive, right? But then eventually, what is it just make them survive, but how about their quality of life? How about their opportunities to pursue their life goals without affecting their economy, IQ, status, etc. So that was my plan is to go back and dig deep in the system, and find out those gaps where those kids sometimes just don't go to school because they get admitted quite often to the hospital. So the family feels a burden, and then they stop sending the kid to school. So those kids will, will will not be able to catch up with the schooling system. And some of them don't end up never going.

Scott Benner 1:09:16
They just stop advancing right you so you just end up being as mature and as your age of when you're diagnosed with something like it's almost like getting sick ends your life instead of exactly right instead of figuring out a way to incorporate it into your life.

Dr. Arwa Al Hamed 1:09:36
Exactly. Even sometimes when they get the kidney transplanted the new kidney transplant and they still because of fear from getting infection, it's some families don't send them to school. Of course, we don't have such a role where they can be where they need where they can be referred to protection services due to that, it's still not technically considered neglect. We do have child protection service but like not send them to school per se for a chronic condition is not really something clear cut, you know? So, so yeah, sometimes out of fear, they just don't send them to school and continues being a problem. So I, this is this is where I started developing the research ideas, why and what can we do to prevent that? I heard when I was in the city, I heard that their start, they have some tutoring programs where they can come to the child during his data session, and offer him some schooling, etc. We didn't have that. We don't have that yet. So my hope is was to create this program where it can be a collaboration between Ministry of Health Ministry of Education, where we can have a whole program established for children with chronic illnesses in which they have regular follow up regular cognitive assessments, psychosocial assessment, and it's, you know, embedded in the education system for these kids. So they can sign up on this program once they are diagnosed. So we track them early on, we identify any limitations if they have, if they have specific problems with math, per se, just due to for example, anemia, maybe with with renal patients, for example. Maybe they will have specific problems with memorizing due to anemia and poor memory, etc. Do you recognize that? Do we have that into consideration? If yes, how and what we're going to do about it? It's unfair that those kids are being treated as normal kids, or they should they have all the right to be treated as normal kid, but I'm, I'm afraid that sometimes we will miss some limitations that are specifically to their condition. But we don't know. Yeah, so that they don't do anything.

Scott Benner 1:12:12
So they don't become disposable. And you don't just see them as a they've got an issue. And now that means they shouldn't enjoy the same ideas that everybody else gets the hope for. It's just exactly. It's amazing. That's beautiful. So you keep bringing them, the idea is to keep bringing them services, that keep them up to speed while they're taking care of their health. Right. Yeah, that's it. I mean, it's so simple, right? Doesn't it just make sense? You know, yeah, people should not because,

Dr. Arwa Al Hamed 1:12:41
as I, as I mentioned to you, when I came back, carry alized, we have other gaps that should start before that, that needs to be fixed. Before we start implementing such programs, for example, we we had, we don't have school nurses yet. Okay. So when you first think about such a program, right, you would think immediately of the school nurse who will be doing the evaluation, or the follow up for this kid, at least in the school, right? Who will be going to do this, for example, cognitive assessment or these regular assessments, I was hoping that this can be implemented in the school system. But if we don't have a school nurse for a specific school or for this specific district, then who's going to do that? Right. So this is where I started realizing, okay, let me modify my goal and start looking for, like, other things related to that to see where the gap is where you can start fixing the the issue is,

Scott Benner 1:13:41
Is it crazy to think that school nursing could become a thing? Like the gift somebody got behind it? Would there be a way to get it funded? And and

Dr. Arwa Al Hamed 1:13:50
I think the funding is just what's what's what's preventing it's, it's, it's a as a law, it has been issued four years ago. But now each hospital needs to have school nurse implementation. Not yet. And I think mainly because of funding issues.

Scott Benner 1:14:11
So you have to you really do have to jumpstart things, they don't just either things start out of necessity, or they start because someone who has the the ability financially gets behind an idea and moves it forward quickly. There's no, there's no other way that things begin really.

Dr. Arwa Al Hamed 1:14:30
Exactly. And you know, what's the major major problem here is the lack of data, unlike in the US were already well established. The search data are there to be to support your ideas, let's say yeah, to support your ideas or to support your proposals for policy health policy changes cetera, we still don't have that. So that's why you come to realize that okay, I need data. In order for me to come and approach decision makers or leaders in the healthcare sector, where they have a lot of huge priorities to come and tell them, you know, what, stop and fund school nursing system? First question that will come to mind. Why, why why now? Why is it urgent, but if you have the data, and if you can show that this is exactly what's going on, those there might be facing additional difficulties making families additional additional difficulties finding jobs. They don't, they just can't, they are not allowed to make good GPAs, basically, just because of how their condition is. So yeah, this is my help starting from the basics and trying to establish some database.

Scott Benner 1:15:42
Well, I hope you are able to figure out a way to make it happen, because it's obvious while you're talking to me, like it makes me feel this way. It's it's, it's obvious why things take so long to come together. Right? Like, it's just it's clear, there's so many moving parts and so many people that you have to talk into it, there's money that has to be raised, and you have to actually do the physical thing, it's not enough to just have a great idea, you actually have to accomplish it afterwards. And then it takes time, then you imagine that you bring in the school nurses, and some of them you hire suck, and then you have to be replaced with other schools, you know, it takes time to get it working smoothly. And thanks. And we all don't have that much time. Like, we're all just like, hey, like my kids in school for this long, or my life is only this long. And then people get frustrated that things like that don't exist. And that frustration can sometimes end up killing your motivation. Yeah, it just takes away your drive. You just think, Oh, I'll never get this done. I might as well go do something different. And you need people to do those difficult things and have those fights. Right? Yeah. So you might as well be one of those people go get them? You know, it's got somebody's got to do it. Somebody has to decide. This isn't I mean, listen, it's a much different scale. But when I began this podcast, I thought, I'm going to talk to people about diabetes the way they need to be spoken to, and not the way that the establishment says, okay, like that, that just needs to start there. Like, we can't just keep telling people, Oh, it's okay, you're fine, you're doing great. Don't worry about it. You know, meanwhile, they're having all the problems that come with out of control blood sugars, and then they're being told by somebody don't worry about it, when they could have gotten actionable information that would have helped them, maybe pull things together a little better. And and instead, we were, you know, oh, we don't talk to people like that. That's dangerous. You can't tell them like you can't tell them how insulin works. Like, shouldn't we at least understand how insulin works? I mean, how many people don't understand how to Pre-Bolus a meal don't have never even been it's never been mentioned to them ever. And they have diabetes. It's, it's crazy. You know, so I just thought, well, I'm going to do it, and we'll see what happens. So sometimes you just got to leap. Because trust me, there were people telling me not to do it. established ideas were very much against it. And I had to fight through many times of people, you know, speaking poorly about me behind my back, or sometimes to my face and telling me that I'm doing it wrong, I'm doing it wrong. And I was like, well, you can do what you're gonna do. And I'm gonna, I'm gonna do what I'm gonna do. And it worked out very nicely. And I hope you have the same kind of success.

Dr. Arwa Al Hamed 1:18:20
What's your background? If I may? I have

Scott Benner 1:18:23
no background with the speaker.

Dr. Arwa Al Hamed 1:18:25
I know, I mean, education. No, I

Scott Benner 1:18:28
know. I know you do. And I don't have any background. I graduated from high school. I went to, I went to work in very blue collar jobs. Okay, I met a woman who was nice enough to recognize that I might be more than my station, if that makes sense. We made a family. And my second child, our daughter, Arden was diagnosed with type one, when she was two, I began using the skills I had writing to write about it online when she was three. And about seven years ago, after developing, I don't want to call it a system, but developing a way of managing blood sugars no matter what you're eating, and keeping a one sees my daughter's a once he's been in the fives for like seven years. And she has just no diet restrictions. And it's because I fundamentally understand how to use insulin. So about seven years ago, I started this podcast, and

Dr. Arwa Al Hamed 1:19:26
I beat this podcast is seven years old, seven years

Scott Benner 1:19:29
old. Yeah. And it's been heard, you know, it's been downloaded. I think we're up to about 4 million now. And it's all over the world. And if you go to just as an example, the Facebook page for the podcast, you will see people constantly all day long, either sharing their struggles and helping each other or sharing their successes and motivating other people. It's really, like astonishing, you know, and it just was, and I will honestly tell you that on day one This somebody established in this community told me you can't do this. Do not talk to people like this, that you can't tell people this stuff. And I was like, Well, I think I think I can. And I'm going it's not a secret. Yeah, well, it is a secret because people are scared to. They're scared to say anything that isn't concrete about diabetes. And I believe that people are smart enough to hear nuance, and apply it to their life. Crazy me. Right. Right.

Dr. Arwa Al Hamed 1:20:27
So yeah, what's the problem telling people that is, is not concrete? Now after COVID? Everybody knows that? Nothing is concrete. Yeah, right. I think people are, I think, again, you know, what, Scott, I really think it's the old mentality that the younger generation are fragile, don't tell them this, they don't need to know this. They don't need to know all the details behind this, and, and so on. So I think you, you came to realize from your experience with your daughter that they are not, they're actually sometimes stronger than us, because they are just born in a different generation. So even I think it came in the right time. Despite all the the recommendation not to it came at the right time, where were kids at this age, are prepared for this level of knowledge for this, that's for these specifications that they're able to do with it, especially that this came with technology, advancing technology, and having this smartphone in my hands with all those potentials that it has, it became very easy for this generation to absorb all those details and apply it in their daily life. Unlike us before, I mean, our generation, we only had TV, and we only watched whatever they tell us to watch whatever they have on the TV. But now they have this, they can choose every moment they have the ability to choose what to read what to listen to, and what to write. So all this gives him this capacity to deal with all the details. Maybe you we are more fragile than them now. Oh, no.

Scott Benner 1:22:15
Yeah, I mean, and you just keep getting to enrich yourself any way that you see fit. And I'll tell you to, here's an aspect of forward thinking that impacts the podcast success that you would never consider. But it's it's this is that 1015 years ago, if I would have done this, let's say the technology existed, and I could have done this. It's a full time job. So I can't I have to sell ads on this podcast, if I don't, I can't do this, right. So 10 or 15 years ago, if I had a podcast, this same podcast, and it had ads on it, people would have yelled at me for making money from diabetes, they'd say, Well, you can't make money off of someone else's illness. And ads are insulting to me. And trust me, I've seen it happen to people. But somewhere in the last handful of years, people became savvy enough about the internet, to understand that if you want somebody to give you something that is consistent, and quality, that they're going to need to put time and effort into it, and that they have lives as well, and bills and families. And so suddenly, no one. It's it's an idea that's gone in the world. Like no one watches a YouTube video. And when the ad comes up, yells and screams at the ad you go alright, I understand I'm not paying for this, the ads paying for this, I get it. And now that that's acceptable. That actually supports me because honestly, this is I record with you today, someone tomorrow, another person on Thursday, in the last 48 hours, I've edited together five episodes, and prepared them to be online, I've probably put, I've probably put 45 hours into the podcast in the last four or five days. And wow. And that's a that's a job, right? So now I'm suddenly able to do that because of people's acceptance and growth and understanding of how the world works. Everybody needs to understand reality so that they can have reactions and experiences that are real, and not just, you know, I'm going to be mad at you because you have a podcast and it makes money and I wish I had a podcast you don't I mean or something like that. It's just it's right. It's a growth of people that's allowing us to help people grow. It's really cyclical.

Dr. Arwa Al Hamed 1:24:28
Right? I bet you also have some of your fans are probably YouTubers too, right? Because now all kids are YouTubers. They all talk in the YouTube language. I have my nephews they they know all the details behind how to become a YouTuber. They know how much money they will give you. You they know what what is the guidelines, and how long is your YouTube should be and how many likes you get in order for you to sustain them. I'm talking about kids who are 11 years old. Old are nine years old, you know, the language I'm talking right now is something very advanced. I mean, so that's why I, the the, the it's easy for this generation to understand why you need to maintain ads in your right. Well, you need to have ads in your show, etc. It's very easy, unlike before. So I think it all happened just in the right time.

Scott Benner 1:25:23
It really did. And there also seems to be this idea now that people seem to want good for other people. Like it's not as competitive anymore, I guess, you know. So, you know, so they look at you and they go, Oh, you have an ad in your pocket. That's cool. I hope to have a blah, blah, blah, you know, and they're, they're excited by the, by the possibility. And I talk this way about diabetes as well. Because there used to be a fervor an idea that you did not share your success with insulin online, like don't show people flat graphs, don't show them that you could Bolus for pancakes, because you're showing off and you're making other people feel badly. Well, I didn't believe that what I thought was that if I could do it, then maybe you could believe that you could do it. Right. Like to have an example in front of me. That's like, wow, that's that's possible. Oh, okay. Well, I'll try that. And and I think that people feel the same way about the podcast, older people will look at me and say, Well, you make money from A what now. And they're almost mad about it. Because they because they work the last 30 years in a car, plant manufacturing cars, and I get it like in their mind, I'm sitting in a room and I'm just chatting. And but younger people are like, Oh, that's cool. Because they see it as a way to live. Whereas older people see it as a as a like, somehow, like you cheated. It's an otologist perspective. It's really terrific. I'm excited about what's to come. And I'm excited. There are people like you out there having thoughts like this.

Dr. Arwa Al Hamed 1:26:53
One more last. One more last idea before. Before, it's just a toy for me. I think what's what was although I, I was a bedside nurse, and specifically the unit I worked at was sub specialize in endocrine and natural. So I dealt with lots of newly diagnosed diabetes kids with a lot of decay after they're stabilized, of course, not in critical care, but in the unit. How, however, my experience with one of my cousins who had type one diabetes, since he was I think, 11. And then with Julia, specifically, being the first close friend of mine who, who had diabetes. So it What was nice about this experience is that it simply normalized. living with diabetes, even for me, for someone who was from the health care area, but I never lived with diabetes daily, I never had diabetes as part of my daily conversation or routine or where I have to, like, think about it all the time. Whenever we talk about oh, she will check her blood sugar, she will mention her blood sugar then often mentioned something about the diet or today I had my blood sugar, blah, blah, blah. That's why I'm feeling this now. And it was part of the daily conversation. So it was to me like something normal. I'm not saying normal in terms of like, of course, they're not normal in terms of their physiological needs are different, but at least the they're not isolated anymore. Or just they have to be isolated. Just because you have this condition. It helps having this normalization making even the conversation the terminology. Very, you know, very witty call it it's reacquainted. So everyone knows, and it's not something, oh, you have diabetes. And I don't I don't need to feel sorry about you anymore. I just feel that this is part of life. Someone has a B to someone doesn't and that's it. This is how life but before you don't know that, that there are a lot of people are experiencing this on a daily basis and you have to deal with it. So what I like about approach of Julia, where she used to share this with us all the time is was it was normalizing it to me I was not stressed out or I mean worried when I'm whenever this topic is mentioned in front of me. I'm more prepared to deal with it, even psychologically, that's just because it happens in front of me all the time. Yeah. So I think even podcasts like yours serves this purpose unintentionally, where you're meeting with people, different countries, and you're normalizing that the experience of type one diabetes and making it Very special. Honestly, it's

Scott Benner 1:30:01
an out and proud mentality. It really is. It's just like, I'm not gonna hide anything, you get to see it. And then like you said, after I see it a number of times, it becomes normal to me something that I hadn't seen before. And then it that's it, the issue is gone, it just disappears into the ether. You just, that's all you have to do is, you know, what is it? What do they say? Sunshines the best antiseptic? Is that the saying? I'm probably not, right, right. Now I've said it, and I don't wanna hold on a second, the sunshine I'm gonna find it is the Sunshine is the best disinfectant, which just means, you know, bring things out in the light of day and it it takes care of the rest, you know, and that's amazing, right? Yeah. It's very exciting. So would you say in general, then, based on your studies, and what you're saying is that is to take someone with an illness, who and understand hopefully, that that illness isn't such that it's going to, you know, end their life, if it's something you're going to live with, that you need to get up and get back to normal? As fast as you can. And that you might need to understand that you're gonna need some support in different places. Yes, but that the most important thing you can do is to not stop, keep going. And don't give away the idea that the life you thought you could have is still available to you.

Unknown Speaker 1:31:25
Right? Yeah, absolutely.

Scott Benner 1:31:26
I love it. All right, we did it. Thank you.

Dr. Arwa Al Hamed 1:31:30
Oh, thank you. Thank you for giving me that chance to share my perspective from 1000 miles away. I hope things went very well with the recording. And thank you very much for this opportunity.

Scott Benner 1:31:45
You're very welcome. No, everything's great. You sound terrific. I've got I've got your recording captured here. And I am I'm super excited to share with you. A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kaipa pen at G voc glucagon.com Ford slash juicebox you spell that GVOKEGL You see ag o n.com. Forward slash Juicebox. Podcast like to thank touched by type one for their continued in long time support of the Juicebox Podcast check them out at touched by type one.org and find them on Facebook and Instagram. Don't forget the T one D exchange T one D exchange.org forward slash juicebox. Take a few minutes and fill out the survey.

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