#1971 Next Person Who Speaks Loses
Next Person Who Speaks Loses
Jackie Waldie is a special education advocate, a former teacher of the year, and a mom of a kid with type 1. She and Scott take apart the 504 meeting — what to ask for, and how to actually get it.
Jump to a moment
- She has been on all three sides of the table. Jackie Waldie is a non-attorney special education advocate, a former classroom teacher of twelve years and her state's teacher of the year, and the parent of a child with type 1. Her most useful admission comes from the teacher years: she once had a fifth grader with type 1, got handed a 504 plan, received no training at all, and was told the girl could take care of herself.
- A 504 is not one-size-fits-all, and that's the point. An elementary plan should look nothing like a high school plan. A building with a full-time nurse produces a different plan than a rural school with none. Her test for any line item: is it reasonable, and does it provide equal access, health, safety and protection? The right answer is neither a bare-bones plan nor the entire circus.
- The crystal ball line, and how to beat it. Administrators tell parents they can't answer a hypothetical because they don't have a crystal ball. Jackie's counter is to arrive with history instead of hypotheticals: we know a fifty on the playground is going to happen, so who is trained, what supports exist, and how does it get written down so it follows the child? Scott's framing pairs with it — you aren't building guardrails to stop things going wrong, you're building a response for when they do.
- Scott's negotiating tactics, stated plainly. Make the ask, then stay silent — the next person who speaks loses. Put yourself slightly below the other party and let them feel in charge while you move them where you need them. Open by thanking them and sharing good outcomes. And every year, hand back something from the plan your child has outgrown, so it feels like you're lightening their load. It isn't a contest to win; it's about getting what your kid needs.
- Three ways parents walk in and lose. Guns blazing and angry before anyone has spoken. Completely uninformed and grateful for whatever they're offered. Or overwhelmed and in tears. Jackie's blunt version: you have to get yourself right first, because this is your child's life and it's their fortieth meeting of the week. She also notes the step most parents skip — writing up your own notes afterward and sending them to the school so they land in the file.
- 504 plan builder — The free tool Scott describes building in this episode — toggle the accommodations you want, with explanations and pushback responses.
- Jackie Waldie — Inspire Education — Jackie's advocacy practice. She is also on Facebook and Instagram.
- Diabetes Pro Tip series — Episodes 1000-1025 — the management foundation behind everything you'd ask a school to support.
- T1D Exchange registry — US residents 18+ with type 1 — take the survey and support research.
Every word of the conversation
Cold open & sponsors0:04
Hello, friends, and welcome back to the Juice Box podcast. Hey. At juiceboxpodcast.com, there's a five zero four builder. Go to juiceboxpodcast.com. Go up into the menu and choose five zero four builder.
After you listen to all this, you might wanna check out. While you're doing other things on the Internet, t1dexchange.org/juicebox. Take the survey. US residents 18 or older who have type one diabetes, when you complete that survey, you're helping to move type one diabetes research forward. T one d exchange dot org slash juice box.
I hope you enjoy this. On today's episode of the podcast, there will be nothing that you should take as advice, medical or otherwise. So please, please consult a physician before making any changes to your health care plan or becoming bold with insulin. I've got two OG sponsors for you today, Omnipod five and Dexcom. That's right.
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Teacher, advocate, and type 1 parent2:03
Well, good morning, Scott. I am Jackie Walde. I am a non attorney special education advocate. I am a mom of two awesome children, one of which has type one diabetes. I am a wife of a soldier who is getting ready to retire.
So that's very exciting. And I'm a former classroom teacher. So I really have so many unique experiences to bring to the table when we're talking about type one diabetes from a parent perspective, from a teacher perspective, and now from a non attorney advocate's perspective.
Alright. I can't wait. And this is very timely. I'll explain why in a second. But real quickly, who told you those kids are so terrific?
I just know they are because I'm a professional.
You ever tell them that? I'm like, I know you're good kids because I was a teacher once.
I do.
Yeah. Yeah. Do you I it's not a terrible thought. Like, I've seen bad kids. You guys aren't doing you're you're not doing terribly.
Thanks for being in the fight. So I'm gonna start by saying, I listen. I have a ton of conversations, and I don't know where all my thoughts come from all the time. Right? So I'm I've been very worried recently that I heard something somewhere and didn't realize I heard it.
How the 504 builder got made3:25
I'm actually gonna reach out to the person to make sure that that's not the case, but I've done some double checking. I don't think that's what happened. I just think there's only so many good ideas in the world. But I was doing an an ask me anything, but that sounds dumb when you're older, doesn't it? I was doing an ask me anything the other day on my on my Facebook group where, basically, I'm editing the podcast.
And on a different screen, people are asking questions, and I'm sort of going back and forth editing and answering questions and stuff like that. It's a way to keep me from wanting to throw myself out of a window while I'm editing the show. So, I'm answering a ton of questions, and this one person says, I need help with a five zero four plan. Okay. And I I clocked it in my head, but it was not a it wasn't a quick response.
So I kinda let it go by, and I thought, oh, I'll come back to it later. And so I'm going back and forth, and then it just hit me. I have my old a number of my old five zero four plans. And now that the world has changed, couldn't I just give them to, you know, my assistant, Claude? He's French sometimes.
Yeah. And and asked Claude if he could maybe just turn them into a document that people could type into and put their names in and then make changes to if they wanted to. Right. And so I I had that thought. And then I was like, why am I limiting myself to that?
Like, how did I make my 05/2004 plans? I went to all these other websites, ADA,
three
all these places that had that this stuff, and I read like a lunatic while I felt like I was gonna cry for days at a time.
Absolutely. Right.
Right. And I'm making notes, and I'm saying, well, that seems important, but this one doesn't. That seems ridiculous. I I, at one point, looked at, like, some people's five zero four plans, and I was I'm surprised there's not a Ferris wheel in one of these. Like, you know, like Mhmm.
Johnny can't be happy if we don't have a Ferris wheel for him to ride on. Like like, some of this some of this stuff seems silly to me, but then over the years, I've heard people say how things that I thought were silly were very, like, kinda poignant to them. And then I just I just said to my assistant, I was like, why are we limiting ourselves to my five zero four plan and my ideas about what this is? Like and I had it, like, deep scrape the Internet for, you know, all these, like, five zero four directions. And before you knew it, I had, like, rules that exist in every state.
And then I was like, what am I doing? I was like, just build this up so that people can just go through and choose which ones they want and which ones they don't. And and give them explanations for each line. And don't even make them write it down, like like, I don't know, make make it like a like a toggle switch. Like, yes.
I want this one in. No. So you can go down and and read and click. And then before I knew it, was like, and what if they push back? And what if they have questions?
And what if like, how do we prep them? And I just turned it into a a really, I thought, pretty cool web page. And then I turn on the machine here this morning, and I'm like, oh, Jackie's here. And these two things are, I think, completely detached from each other that you're here today and that I did this last week. But I don't know because I don't know how the subconscious mind works.
Why there is no one-size-fits-all plan6:38
So Right. I think it's serendipitous. I mean, that's usually what I use. You know? Yeah.
I feel like things align. And I think what you're doing is fantastic. It's such an interesting conversation. So from my perspective, I completely agree. We don't want to limit ourselves with a five zero four plan, but it's also not a one size fits all.
So a child that has an elementary five zero four plan is going to have a very different five zero four plan than somebody in high school. Okay. Maybe somebody has a full time nurse in their building or they have a one to one aid. That five zero four plan is going to look different than somebody who is maybe in a rural area. They don't even have a school nurse.
Yeah.
Right? And so I think that understanding what's reasonable kind of when you were talking about, you know, having, like, the the the entire circus inside your five zero four plan. Right? You you always wanna say, hey. What's reasonable?
But you also wanna make sure it's providing your student equal access. Mhmm. And it's there for their health, and it's there for their safety, and it's there, you know, for their protection. And so I think that's why five zero four plan seems so complicated because parents will often go in with their initial diagnosis of type one diabetes. And just like you said, I cannot tell you how many people sat in my office crying their eyes out
Mhmm.
Just with that fear of we don't know what school's gonna look like. We're barely surviving this ourselves. We're a new diagnosis. And they go into the school, and they kinda trust that the school knows what they're doing. But, really, the school is operating from, well, this is what we've always done with our students from with diabetes.
Yeah.
They're maybe not necessarily operating from a place of training, knowledge, and firsthand experience.
Maybe. Some schools are. Jackie, that was very kind when you said maybe. Well,
some schools might be. I have a a school nurse that is, you know, fantastic, and they're doing a book study on it. They're doing the Pink Panther book, and they're bringing people in to talk about firsthand experiences. And, you know, so I have those stories of excellence. And then I have those nightmare stories where, you know, you're sitting across the table from an administrator and they say, diabetes shouldn't even qualify for a five zero four plan.
Oh. And it takes everything you have. Don't it out. Yeah. Don't forget too that you could have a scenario at an institution that's a fit a fantastic situation, and then someone loses a job, changes jobs, somebody moves up over top of them.
And before you know it, you know, you're out there telling people like, oh, you know, that school, that's great. And then they get there and, like, it's not been my experience. They don't seem to understand. It only takes one person to move out of a job, and that's it. I you know?
I say that in the opposite all the time when I'm in these meetings. I say it takes one person to be dedicated.
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It takes one person to believe.
It should be in positive. Yeah. Okay. I could I could have gone at it from that perspective. Yeah.
No. But I I'm gonna tell you, like, I have a a lot of experience with this, and I'd like to make this if you have time to really, like, have a nice conversation, you know, I'd like to give some background and get your feelings, see how things have modernized or changed since, you know, I've been at it. So Sure. I'll just start with you know, my daughter was diagnosed when she was two.
Mhmm.
And I had all the fears and all the things were going wrong that everybody else experiences, generally speaking. And by the time she was four, I was already thinking, oh god. Next year, she's gonna have to go to school. Mhmm. And at that point, Arden was, you know, MDI and not even like a like a pen.
Arden's actually never even used a pen. We had, you know, syringes and vials of insulin and a meter. Mhmm. And that was kind of it. So I had two focuses getting her to to school.
One, I wanted to get her onto a pump and because I just couldn't if I'm being honest, I couldn't stomach the idea of someone else stabbing her. That was really sort of just it. Right? I didn't I don't even know if that was a real legitimate thing I should have cared about it or not. I just know that I couldn't I couldn't make myself right with it.
And and I wanted them to be prepared. I wanted to have a five zero four plan in place. So I go into the school at the end of the year previous to when she's going to begin. And they and I'm not joking, laughed at me in the office. Ugh.
Because I'm like, I'm here to work on getting my daughter's five zero four plan set up for next year. And they were like, we don't we don't do that ahead of time. And I was and I my first thought
was you do.
I go I go, what are you gonna do on the first day? Like, it like like, let's say that you have me in on day one and we get this thing set up and everybody understands. In a couple of weeks, everybody's, like, right on, and they know what's going on. What happens in those two weeks? Mhmm.
And I think they thought I was out of my mind.
Mhmm.
Like, sincerely. And Mhmm. So they they refused, then and I acquiesced. And then we started doing it at the beginning of the year. And I had been working the whole summer, like, know, on all the different websites that were available at the time, pulling information, trying to like, other people's five zero four plans to look at and trying to be reasonable.
Like, I didn't wanna go in there and ask, you know, for you know what? You know, she really would be more comfortable if she had a tiger. You you know what I mean? Like, any anything yeah. Right?
I was trying to be I was trying to be measured. And I came up with a document that was a couple two, three pages long. And I showed up for my meeting, and then the guy laughed at me again. And he said, no. We have a five zero four plan that you can use.
And I actually thought, oh, good. That's great.
Yeah.
And he left the room. He came back in with a sheet of paper that looked like it had been, I'm gonna say, you know, photocopied. And it had five bullet points on it. And I looked at it, and I said, if you try to keep my daughter alive with these five things, she's not gonna live long in this school. Yes.
And he went right to all the stuff you said. Oh, there's kids that we've had kids in the school before with type one diabetes. They're fine. Everybody's fine. Like, doing that, like, don't worry.
Be happy. Like, you know, it's Yeah. And and I just I fought back and I fought back and I tried so hard. And I finally got them to accept her five zero four plan, and we worked on it together. But the one thing that they wouldn't do at the time, I asked for, like, an aid to be with her on the playground.
Mhmm. That was pretty much it. I was like, I'd like somebody, like, before recess to just sort of collect her at the because she's gonna go to the nurse's office before recess. She's gonna get her blood sugar checked. I for everybody using a CGM, you try to imagine, like, she goes to the office.
They check her blood sugar.
Know. It's hard for me to
imagine. Yeah. Yeah. Yeah. To see if it's gonna be okay.
And, and then I just wanted someone to go out there with her, hold her bag, and just kinda keep an eye on her. You know? Because she because, you know, she was five. And and they said no. They were adamant about no.
And I'm sorry this is a long story, but
No. It's not. I love listening. This is what I do.
Well Yes. So some months later, I being an listen. I trust humanity as a whole. Like, you know what I mean? Ish.
But
But you're skeptical.
Well, listen. I I'm not losing a kid because I trusted you. Okay? Right. Right.
So my phone was littered with timers, and my timers were set to bring myself back to reality a few minutes before she was going to have something done to her at school. Because part of my five zero four plan was you check her blood sugar, then you call me and tell me what her blood sugar is, and then we decide how to move forward together, and then we do the thing. And I did that all day long every day. So one day, my alarm goes off. I'm vacuuming because I I don't know if you know this, Jackie.
I was a stay at home dad. And ahead of my time, by the way, back before they were doing it, That's neither here nor there. And I'm vacuuming. My alarm goes off. And so I just I I write myself.
I'm like, oh, someone's gonna call in a minute. Then they didn't call. And I thought, well, I'll be a reasonable person. You know what I mean? I'll wait another couple minutes.
I'll wait a few more minutes. I'm like, It's enough. I call the school. The school has to put me through to the nurse's office. The phone rings.
Someone picks it up. The voice says, nurse's office. And I said, hey. I'm calling to see about and I didn't even get it all out of my mouth because I don't know if you can like, I have a fairly recognizable voice. And the person on the other end yells, oh, damn, Arden.
And then they hang up the phone.
Oh, no.
And that was it. So now I'm just standing in my house going, oh, damn Arden. Like, what's that mean? What? Yeah.
Yeah. And and but, okay, there's I I recognize the nurse's voice. She's now thinking about Arden. I will stand here quietly and wait for my phone call. So I do finally get that phone call back, and all that happened was that another child in the school had a medical emergency right before they were supposed to grab Arden for her blood sugar check.
And so no one did. And now imagine what that means back then is that some someone was supposed to go to Arden's room, collect her, take her to the nurse's office because she was, again, five, and then check check her blood sugar, then call me, do the thing, push her out onto the playground by herself, like, through a door Right. And blah blah blah. Except right before that, a kid literally needed to be put on a heart monitor, and everybody just got super focused on something.
And they forgot her?
Well, not only did they forget her, but ask yourself, six, eight months into a school year, how does her teacher not know Right. Why why is no one coming for Arden? So look at all and by the way, the teacher's a lovely person. I just saw her at the Costco the other day. Okay?
Right. Yeah.
And But the system failed. Yes. Right. The protocols failed.
And a lovely person who cared about Arden, enough to ask about her seventeen years later in a Costco. Okay? Mhmm. But in that moment, even though they had done it day after day, week after week, month after month, no one came to get Arden. Nothing fired anybody's brain.
They sent her out on the playground. That nurse went and collected Arden, I was told, off of the top of the monkey bars with a blood sugar of 50.
Oh my gosh. Okay. That's so scary.
Yeah. So they they get her back inside. They fix her up, send her on her way, all that stuff. And then they call and explain it to me. Now where most people I don't know what most people would do.
I put myself in my car. I drove to the high school.
I would yeah.
Mhmm. Where the superintendent's office was, and I sat outside of the superintendent's office. I said to the secretary, I need to speak with the superintendent. They said, you don't have an appointment. I said, don't care.
I'll I'll wait. Okay? So I waited for a while. They tried to shoot me away a couple of times. Eventually, I made my way inside.
And there we are having this conversation. It's the same one we've been having before. We don't understand why Arden can't take care of herself.
She's five.
Yeah. Well, I said that.
And educators do not understand
child development? I said,
am I asking that question?
I said, well, I barely understand how to take care of her, and she's five. Five. Right. Okay? Right.
So I went over and over again, and I said, look. I tried being nice. I tried to explain to you what could happen. I asked, you know, kindly. I didn't put a tiger in here or a Ferris wheel or anything like that.
I asked for somebody to be with her in this one situation. You said no. And today, my daughter with a 50 blood sugar is crawling around on the top of a monkey bar. And I said, I wanna be completely clear. If you kill my daughter, I will spend the rest of my undoubtedly very sad life trying to pay you back for that.
And I will do it through attorneys and any other thing I can think of until my name's on the front of that goddamn high school. Okay?
Right.
And I said, and and for no reason other than I will have nothing to do except be angry at you and sad and miss my daughter. Or could you just have a low level person stand and stare at her for twenty minutes once in a while? Like, I'm not asking for the person to have six PhDs. Right? Right?
Right.
Well, we can't afford that. We can't afford that. We can't afford that. I said, I swear to you.
That's not a law.
You better I'm
not an attorney.
Uh-huh. I said, you better reassess your thinking, I said, because you definitely won't be able to afford it after you hurt her. And that was it, and I left. And they called me four hours later, and Arden had an aide. And that was it.
Good for you. Yeah. Good for me. None of that shoulda happened.
And none of it should've it shouldn't have happened. Right? And that is something that is so terrible that still happens today.
That's my point.
Until that they know that the family knows that a law has been violated, a child's life has been put at risk. It's like in some schools, I'm not saying all, but in in many, you have to push them and push them to the limit to get them to give you what is reasonable because so much gaslighting goes on. Right? You are the difficult dad. You are fighting.
You are making this a problem. We've got this. We're educators. And you leave those meetings going, maybe I am. Maybe maybe I am crazy.
Maybe I am a problem. Maybe I am asking for too much. Yeah. And and you just start doubting yourself, and then you have these moments where your child is 50 on a playground, and you're like, no. I wasn't.
It was you guys. It wasn't me. You know?
Well, it's diabetes, but Yes. Let's all just, you know, maybe try. Like, why are we why are we throwing it up to god all the time? It'll be we've had other people through. It'll be fine.
By the way, I learned my lesson on that when I I found those other people who'd been through the school. And they're lovely people, and I like each and every one of them. But most of their kids are walking around that school with a 250 blood sugar so that nobody will get low. And everybody's happy with that because they go, oh, you know, if we keep their blood sugar higher like that, then they don't get low at school. Well, awesome.
And then they don't have to deal with it. Right? But then what's the long term effects of having your blood sugar that high all the time just because you're afraid to push the adults to get some training and do what's right.
Why am I educating my daughter so that twenty years from now, thirty years from now, she can suffer serious medical conditions? Like, why don't we all just go sit on a beach and stare at the the sunset until it's over? Like, I mean, like, what what what's the point of all this? We're gonna educate her, make her a, yeah, make her a thoughtful part of society. And then when she's 30, she's gonna need laser treatment in her eyes because, like, what what kind of and then you say that, and they go, that's not gonna happen.
I'm like, who are you? What do you got? You got a crystal ball over there? So oh, Jackie, I can tell this conversation is gonna make me upset, but go ahead. Go ahead.
I know. Yeah. You know, I'm so passionate as well about what I do, and I face situations daily that just infuriate me, make me angry from the standpoint of I was a classroom teacher.
Mhmm.
And and I wanna share this story because every time I see this student, I feel like I need to apologize to her. I had a type one diabetic in my fifth grade class. And this was years ago, probably fifteen years ago now. And I didn't get any training. It was like, and she was a fifth grader.
“I had no training”24:17
Mhmm.
And I was like, nope. She's good. She knows how to handle it. If she starts going low, she'll ask you for a juice. And now that I have a type one diabetic, I am appalled at how that was handled for me.
Mhmm. Here's her five zero four plan. Just read it. And I remember saying to this student, there are times I'm like, you don't look okay. Do you need to check your blood sugar?
Do you need like, why am I asking her? Right? I didn't know that it's maybe not the best to ask someone when they're going low. You should just know how to treat it and how to handle it. I had zero training.
And I think what you said with the word crystal ball, I hear that. I've had administrators say that to me, excuse me, in a meeting. Say, well, we can't answer that what if we don't have a crystal ball. And I think parents need to do that. I think parents need to sit down before their five zero four meeting and, like, listen to your podcast, talk to other diabetic parents, and think about these what if scenarios, and then have an answer for it.
The crystal ball problem25:22
And be able to go into that five zero four meeting and say, I know you can't answer what if, but here is what history tells me. Here is what experiences tell me. Here is what I know. We are going to have a moment where that child is gonna be on the playground and has a 50 blood sugar. We know that is going to happen.
How are we going to be prepared to deal with that? Who has the training? What supports are in place? And how are we gonna get in get it in writing so it follows this child throughout their school career? So I think it's it's really those pointed questions.
And I think it all comes down to trust, and it it connects with so many other fields in our life. Right? We trust our doctors. We trust our law law enforcement. We trust our educators.
And I think when it comes we just naturally trust. And when you have a child that has any kind of disability, I think that parents learn the hard way that that trust is false and that you need to go in prepared and educated and not trusting that other people know what's best for your child. You need to be engaged. You need to be the one that knows what's best for your child. So
Trust, and why it isn’t enough26:38
Yes. My god. Yeah. Jackie, you and I are are are separated at birth. Listen.
I'm I'm it's diabetes. It's not if it's gonna happen. It's when
it's gonna happen.
Yeah. We're not Mhmm. We're not and we're not prepping to stop things from happening. We're prepping to respond when they do. This is this is a very important little nuance around the whole thing.
They all think that we're setting up guardrails to stop anything from ever going wrong. That's not the case. I don't I don't want the diabetes. It goes wrong every time. Something's constantly going wrong.
Okay? So
Right. Like
But on those moments when they go wrong and they lead to dire situations, how do we either get in front of it or rectify it quickly without a problem? Have you heard the have you heard the episode of the podcast where the school nurse gave gave the kid, like, two hundred units of insulin?
I have. Yeah. Yes.
That that, I'll use a line from an old, Julia Roberts movie. Did it did it did it shrink your testicles to the size of raisins when you heard it? Does does anyone know that? What's that movie with the Julia Roberts? She's a famous American in England.
She meets Hugh Grant.
Naughty Hill.
Nah. Thank you. Yeah. There's a great line in that where the guy says, I'm gonna tell you a story, though. Shrink your butt.
To to sign and Yeah. Yeah. Yeah. Yeah. It's it's unthinkable except there it was happening.
And it's not, by the way, and it's not because I'm gonna tell you. It's not because the person didn't care. It's not because they weren't trained. It's because sometimes things happen. Right?
Yeah.
And sometimes things happen that maybe it's it it could be the school nurse. It could be stress. It could be a testing scenario. It could be PE. It could be that somebody brought treats for a birthday party, and, you know, my kid decided I'm just gonna have that cookie and didn't know how to dose for it.
I mean, there's so many factors that potentially these five zero four teams don't understand.
Mhmm.
And and our need to be diligent and proactive and on top of it. One of my favorite strategies when you were talking about having your five zero four plan and they wanted to do it the first day of school, and I'll just share this. I find out when teachers are contracted back to be in the building, and I email the, either the principal or the special ed coordinator or the five zero four coordinator, you know, whoever is your go to person, and say, hey. I know teachers are back on contract. Let's have this 05/2004 meeting before school starts.
Get the meeting before school starts29:13
Jackie, you're what they call a pain in the ass, but in a good way. That's awesome. I like that. Yeah. Yeah.
Yeah. Such pain.
I know.
That's awesome. I love that.
And I'm just it's such a great strategy because then you're not putting a 504 plan into place in May or June where people are gonna forget about it.
Mhmm.
And you're meeting with your five zero four teacher, you know, your five zero four team in typically in August. Right? Depends on if, like, you're East Coast. Sometimes that's, like, after Labor Day, so sometimes it's, like, September. Right?
And so you're meeting with them before that and you're you're laying it out and you're giving them time to digest it all, to look over any resources you give them. But here's the other thing that people forget. The 504 is the first step. I can tell you how many five zero four plans and IEP is the teachers get, and they spend three seconds looking at it, and then it goes in a folder in their desk.
Yeah. Because they don't think anything's bad is gonna happen because it's human nature to believe everything's gonna be okay. But Right. Right. Right.
Right. Yeah. What they need is to be woken up at 02:45AM by something going and their wife yelling, hey. Is Arden okay? I don't know.
Hurry up. I think she's gonna die. Arden. Oh, Arden's having a seizure. Jeez.
Okay. That'll get you right. Then somebody will hand you the 504, except they're not gonna have that experience. They're not gonna ever have that experience. Okay?
So And
I think that's why, like, your podcast is so important. Like, we have to share these experiences. And when you go to your five zero four meeting, you have to tell your story. Right? Don't let them bums rush you and say, oh, we have thirty minutes for this meeting.
Tell your stories. Tell them about how, hey. This last month, my kiddo or this last week, my kiddo's been having Lowe's every night at 2AM. I'm exhausted. My kid's exhausted.
Let's talk about how that's gonna impact them at the school day.
Yeah. Also, they're gonna be late, and I don't wanna see you market. When
Oh my gosh. The truancy fights I've had over diabetes.
Oh my god.
Like, not even. That will make me so angry.
I I just Because Yeah. Yeah. Yeah. Because
it
I
have to miss school. Mhmm. Not just because of doctor's appointments, because of high blood sugar, because of low blood sugar, because of feeling terrible. And I'm like, you better not send truancy after me because we're gonna we're gonna have a problem.
Yeah. Here's the thing. I I wanna be kind, but it's likely I won't be. I I just sat the other day in my in my kitchen where I make food and and people congregate. And there was one of, like, Arden's new friend Arden's, like, lifelong friends who's a new teacher.
She's graduated from college. She's gone through student teaching. She got a job. Right. And in a couple of weeks, someone's gonna walk in a room and go, hey, missus and she's gonna be thinking, oh my god.
What am I doing? Because she's 22 years old. Okay? Right. And and she six months ago, if you would've I I would tell you she's a lovely person.
I would tell you she's thoughtful. I would tell you she's kind. I would tell you all kinds of lovely things about her. I wouldn't tell you I'd put her in charge of my eight year old's diabetes. But now all of a sudden, she's a teacher, and we go,
oh she is.
Yeah. And so she's in charge, and we all just go, well, she'll be okay. No. No. She's the same person who sat in my kitchen six months ago and didn't know the answer to a very simple life question.
And and and if you all think about yourselves and be honest for a second, most of us, I'm including myself and everyone else that I've ever met in my life almost, are not prepared for something like this. Okay? Like, gosh. No. Yeah.
We are not prepared. Like, becoming I listen. I know 50 cops. They're great people. They do an incredibly hard job.
They're also nudniks, and and some of them have weird, things they like to do with their free time. And, you know, like, hobbies where you're like, really? That's your hobby? That's insane. They have good relationships and bad relationships, and then some of them get divorced, and some of them don't.
Some of them have children, and some have never had a kid before. But when when push comes to shove and something goes wrong and a guy rolls up in that car, I think, oh, finally, the guy's here. The lady's here. The one who knows what to do. They just showed up.
Yeah. I know them on the other side of their life. You you all know teachers and nurses and doctors and administrators and people like this. And Jackie's point is not lost on me earlier in the conversation. I I've been saying this on this podcast for years.
There are some professions that we are raised to just kinda bow down to. And Mhmm. I don't think that's a good idea, first of all, but I think it's a really bad idea when it comes to putting my kids' life in their hands. That's why I make them train the school bus driver. Right.
But, like, but they when when I was like, I I want the bus driver to know how to use glucagon and to recognize signs and symptoms and to get a training. And they were like, well, she's only on the bus for twenty minutes. And I said, seems like a long twenty minutes if she has a seizure on the bus, don't you think?
And Yeah. And that's the kind of questions you have to ask and point out. Absolutely.
Right. Yeah. You have to keep explaining to them, like, the what could but by the here's the other problem. You point out the what could go wrong, but at the same time, you don't want people are I'm not even gonna use any, like, words. I'm just gonna say people, and then I'm gonna move on to my next thought.
Okay? You start telling people all the things that could possibly go wrong with you, and suddenly, you're an albatross around their neck. And they and they see you as broken or problematic or making their day harder or they walk out of that room thinking I don't get paid enough to go to this. Like like that kind like, yeah. People are terrible inside.
Inside in the middle. Okay? Not everybody can be a podcaster. My life is light and airy. You understand?
I can I can afford to work out here on the fringes of what wouldn't it be nice? But it's because I
life is not life, Neri, because, you know, it is personally outside of what I do. But with what I do in the trenches, it it really kinda makes you a little jaded.
I'm not overstating this. Right?
Trust people. Yeah. Right.
I'm I'm not overstating this.
Mhmm.
Yeah. You get in those meetings, and you're like, I am sitting with three idiots. Or I or
I would never say that.
Jackie, no one said you would say that. I was talking for you in a podcast scenario. Right. Okay. Where you sat across I listen.
I'll put it on me. I've sat in a room and thought, oh, that person seems like they've had a head injury. Or I've looked across the room and I thought, Why are they not understanding what I'm saying? Or this nurse has an ego the size of, you know, Manhattan. And and she thinks she knows everything.
I had one lady tell me one time, she goes I said, well, listen. Here's how we have it set up. Because I don't know if you know this, Jackie, and I'm gonna take credit for this. I am the originator of the idea of texting diabetes. That's how old I am.
When you hear other people talking about how texting is, like, the four like, the best way to manage your kid from distance and blah blah blah, that's Scotty Right. From twelve years ago.
Okay.
Okay?
Okay.
I did that. You're all welcome. That's awesome. And I'm the I'm the I listen. I'm a say it one more time.
I'm the one who stood up and said that texting is, like, literally the diabetes tool no one is using. They're using it now. But when I said it, ain't nobody was doing it. Okay? And so I I go into Arden's five zero four meeting at when she moves from the middle school to the high school.
High school.
Yep. And I say, listen. Lucky for you guys, this is Arden. Her a one c is in the high fives. She is fantastic, knows what she's doing.
We have a system like no else. It's actually used around the country by other people. You'd you're never gonna see her. I'm gonna use the nurse's office as a place to source some supplies because every once in a while, she's gonna have to swap a CGM or a pump at school or something like that. And by the way, if that's even gonna happen so infrequently, we're not even gonna leave insulin with you.
If that happens, I'll run insulin over to the house to the school because I live that close. Okay? And the nurse, offended, sits up straight in the chair. She goes, no. No.
No. I'm gonna see Arden every day. And I looked over at Arden, and Arden was like, what is going on? And She wants to see her every day. Yeah.
She I I said, I'm sorry. She goes, well, I I like to have a good tight relationship with all my type ones, so I know what's going on with them. We'll sit and chat. She don't know Arden. Arden ain't looking to sit and chat with her.
Okay? I don't know if you can tell from my personality. I also wasn't looking to sit and chat with her. So and so, like, we're like I said, no. And she said, well, that's gonna be a problem for me.
I said, well, that'll be a problem for you. It isn't gonna be a problem for me. And that's not what we're doing. I was like, you are the nurse. God bless you.
I'm glad you're here. I want you to hear all this. If my daughter should have an experience that is unforeseen, Please react as if she was anyone else. But in all those other moments, leave her alone. I don't want her down here sitting in the sick room with people.
I don't want my daughter's high school experience to be that she was best friends with the nurse. Okay? Right. Like like and and even though I hear what you're saying, and I by the way, as you're hearing me say this, you're like, that's kinda you're I know what you're all saying. It is lovely.
But, like, it wasn't necessary. But the point is is that when I said it, you know, I didn't say it to her the first time that way. I was like, oh, no. Don't worry. We have a a she'll probably never even see you.
It'll be great. Blah blah blah. She was offended. And then she got her spine up, and then she went on the offensive to defend the way she does things. She started, like I don't even know how to describe it exactly.
It's almost as if she had a little thiefdom, and I was telling people it wasn't necessary. Does that make sense?
Yeah. It does. It's almost like you know, one of my favorite I'm gonna connect to this. Sorry. My thoughts are scattered.
But one of my favorite advocacy books to read is five dysfunctions of a team. Right? And it talks about different personalities within the team. And it's almost like she had her own agenda, her own personality that needed to come out, and she wasn't considering Arden, and and she wasn't considering the parent input. Does that make sense?
Oh, a 100%. She was like, no. No. No. I've been doing this forever.
I know what I'm doing. This is what we're gonna do. And by the way
And you and I have really bold personalities. Now imagine being a person that doesn't have that kind of personality.
Why I'm having this conversation because what I've learned making this podcast is that most people aren't me. Most people most people just walk out and they say, well, I you know, she made a good point. Like, it'll be nice. You'll see her every day. But yeah.
Yeah. I don't know how you all end up getting pushed around like that, but that ain't happening to me. And so Yeah. And and when I don't know what I'm doing, I will also go, oh, okay. Well, that sounds great.
Like, that's I'm I'm glad to have thought of that you thought of that. Like, I'm not just out there, like, running forward with my idea and not listening to other people.
Right.
You you know?
Well and and I think what happens to those people that like, when you said, oh, hey. I'm not out here getting pushed around. I think that it goes back to what we're talking about. Those people have, like, an inherent trust in their nurses and their school staff, number one. Number two, they don't know what to say.
I hear that in my office all the time
Mhmm.
That people will say to me, Jackie, you have all the words. You have all the language. You know? And for me, I've always kind of been able to think on my feet and and be able to say what's appropriate. Yeah.
But at the same time, you know, I have all of that jargon training from either education or diabetes or from advocacy, or from the ADA. So I know the things to say. And so people get into those moments where somebody is coming across authoritative, professional, and it's like they freeze. They don't know what to say. Mhmm.
And then the emotion comes out, and then they get frustrated. And I see this time and time again in every meeting. And and then you're trying to get empathy from that person. Like, that's our default. Like, if they could just know how hard this is for me, they will be empathetic.
And and a hard truth that I've learned is that our world lacks a lot of empathy. And that you may be sitting in that chair crying, and you may be sharing your story about your daughter, your son, and the seizures and the struggles you're having. And that person is just likely probably sitting across from you going, like, are you done yet?
Yeah. Wow.
And and Yeah. Yeah. And that's sad. That that's really sad that we live in that world that and and I often have to point out when I see the deadpan look on people's faces in the meetings and and this parent is pouring their soul out. I have to remind people, and I'll call them out on it.
I'll be like, and do we have any empathy? What can anybody relate to this? Because it seems like this team is just kind of waiting for her to finish.
Yeah. Yeah. This is uncomfortable.
Just kinda goes quiet.
Well, that's beautiful. I this is uncomfortable. I don't know what to do. I have no context for this. I'm gonna sit.
I'll make my I'll make my best funeral face, and then we'll get out of here. And then we're gonna go in the coffee room and talk about what a lunatic those people are. Oh my god. They're out of their minds. You see
yeah. I'm sure everybody talks about how crazy I am. Like, I am I am Yeah. Sure it happens.
Because they lack they lack context.
Right.
Right. Empathy and the ability to imagine the thing that isn't their thing. And they don't know that the kid walking around with a two fifty blood sugar by the way, let's build a bigger picture. You put a kid with a bit a two fifty blood sugar in a school and you let him walk around, you go, well, at least they're not having a seizure. Well, now you've traded today's problem for tomorrow's problem.
That's the first thing. Well You know?
And the other thing I'm sorry to interrupt. Don't. The other thing is that when your blood sugar is at two fifty, let's talk about how that changes your brain.
Yeah. You can't learn.
Affects your learning. Yes. Let's talk about how that affects your test scores. Let's you know, I have that's one of my things in our five zero four plan is to really monitor that blood sugar, and we're not taking tests if it's above a certain number. We're just not doing it.
Can I can I tell you? I think back sometimes on my life growing up in school and how bad I was at school and then learning as an adult that my iron was low. And I think, I wonder if my iron was low when I was a kid. Like, I was always tired for no reason. And Mhmm.
And I was always heavier for no reason. And now, you know, as a 50 how old was I? Like, 51, 52 year old a few years ago shooting a GLP into me and watching my brain wake up and my body go back to the way I imagined it was supposed to be my whole life. I was like, what what all was I battling through that I didn't know? And Right.
And take that aside, but lay diabetes in that in that sphere and talk about that like that. High blood sugars, swinging blood sugars, low blood sugars, worrying about your blood sugar, worrying that somebody's gonna find out you have diabetes, not wanting people to see your thing. I could sit here, probably rattle off a 100 things that that kid's worried about walking around, half of them conscious, half of them subconscious. Yes. And then say and then they're like, wow.
Look how sad she is. Her kid doesn't have a pancreas that works. I can't wait to go to lunch and Sorry. I'm laughing. Scroll my TikTok.
I see you out there. I see in every don't worry. Every walk of life, there are wonderful people. There are dedicated, thoughtful people doing their best Mhmm. And there are not.
And I don't know how you're supposed to tell the difference. Like Right. Like right? Like, who's the one who's gonna fight for your kid, and who's the one who's gonna go, No one came for Arden. Oopsie.
And, like, that Mhmm. You don't know who's who. Also, by the way, they got lives too, and they got children and health issues and husbands and and floors that creek and all the other things that happen to people. You think they're sitting around thinking about your kid? They ain't thinking about your kid.
Like, I Right. Like, I listen.
Oh, I hear them. They say it in meetings. They say, you know, I have 30 other students I have to worry about.
Yeah. Okay. I've had
that said to me multiple times.
You know what you should do? Think about them because it's your job. Like, it's like when a doctor says, oh, you know, we do better, but we only have fifteen minutes. I'm so sick of that. Oh, I almost cursed.
I'm so sick of that excuse. Like, if that's the if that's the problem, could you offer me a fix instead of a a throw your hands up in there? Go, oh, there's 30 kids in here. Oh, you know what you want me to do? Yeah.
Like, I mean, I mean, here's what I'd like you to do. Don't let my kid pass out. Could you handle that?
Right.
Apparently not is my point. Yes. Okay? Right. Oh, Jackie, you and I turn this microphone off.
You would say terrible things about people. I will enjoy that conversation when we're done recording. Go ahead, Jackie.
I can say that right now because
Go, Jack.
You know? Yeah. I have I have awesome stories, and I have terrible stories. I truly have awesome stories when it comes to my own daughter Mhmm. And the nurses that she works with.
And I am not just saying that because I fear any repercussions. If anybody in our school district knows me, they know that the repercussions are gonna get addressed if there is any because, technically, that's illegal, and I'm not an attorney. So I always have to disclose that. Right? You can't have any kind of retaliation or repercussions.
And our school has done a fantastic job with reading the Pink Panther book and and bringing in parents to talk about their experiences and training their staff and letting sugar pixels in classrooms and following CGMs, and sending you know, making sure that if the nurse is gone for that day, the sub nurse is trained or the the secretary is trained. So I have no personal complaints that way. But other people that I have advocated for, horrific, horrific stories Mhmm. Of and and they have been trained. They have been talked to.
And then, you know, things like, well, we've already had a 504 meeting. I'm sorry if you're not following the 504 plan. We can call a 504 meeting whenever we want. We can we can be a thorn in your side and have a five zero four meeting once a week to make sure you are following this five zero four plan if we need to. You know, we can also file a complaint with the office of civil rights, and then you're being investigated.
So what are your choices here? Are we gonna follow this plan? Am I gonna be a thorn in your side where I'm at this meeting and I'm bringing my advocate and I'm asking you for documentation and I'm asking you to write everything down that you're doing to prove that you're doing it, or am I filing an office of civil rights complaint? Like, I can go there. You know?
That's what I tell people. You know, I go into these meetings, and and I try to be collaborative, and I I try to be friendly and build bridges and be positive. But, you know, my family's joke, there's a moment where I take my glasses off and I put them on the top of my head, and I'm like, alright. And then they know, like, oh, she's had enough.
I thought you were gonna say and try to build bridges and all that bullshit. I thought that's what you're just saying. I I again, I I I'm talking to people whose kids have to go to school with, you know, diabetes or something similar to that. Right? You are the only one that cares.
Okay? Just put that in your head. Don't be sad about it. Don't wanna fix the world. Just say this is true, and we need to move forward.
Because, also, I don't want your kid becoming a poster child for, like, we fought the system. Because trust me, you fight the system in one place, and it just needs to be fought in 10,000 other places. You don't want the talk. It's not gonna it's not your fight. It's your thing to, in my opinion, navigate, negotiate, get through happily.
That's it. Right. So I'm gonna kinda tell you the other side of this whole thing. When I started to realize what was happening like, you know, I I don't wanna go back too far, but you're born and you have a nice feeling about the world. And when you're young, you're like, oh, everybody's everybody's out there trying.
And then you get a little older and you go, that's not what's happening. Everybody cares. Everybody's nice. That's not true too.
Right.
Well, a mean person wouldn't be a a principal. Not true. A bad person wouldn't be a cop. Uh-oh. Not true.
Like, you know, school teachers care about kids. Some of them just want the summer off. And, like, when you and you go through the whole thing, right, you realize, okay. Mixed bag. This is the world.
I gotta get my kid through this world. Like, that's when I became, a ninja about it. I was like, this is what she needs. It's all here. All this stuff's here so I can call a meeting or sue you or whatever I have to do if you don't do it.
But let's be honest. I don't want that. You don't want that.
Here's want that. Right.
Here's the really important things. Let's do these things. You'll never hear from me. And then I would do this thing every year. I would thank them at the next meeting.
Give something back every year50:23
Everything went great last year. I really appreciate it. I'm so glad that we focused on this, this, and this. Those are the only things that matter to me. Made Ardens, like and then I would share her health outcomes.
I'd say you guys would be thrilled to know her a one c has been this. Her stability has been great. Like, make them feel like they're a part of it. By the way, they're not a part of it, Jackie. Just make them feel like a part of it.
Like, okay. We're winning. She's winning. We're all in this together. Blah blah blah blah blah.
You're all married, you know, when your wife's telling you stuff and you're like, I don't I think she's just trying to keep me taking out the trash. That's what she's doing. She just wants wants you to take out the garbage. Okay? Like, so you give them the rah rah.
Everything's going good. And then I say, hey. And you know what? I know how difficult this is. And I looked at the five zero four planning.
And, you know, there's a couple things in here that were for when she was younger. Let's take them out. Let's make it easier for you. I give something back, Jackie, every year. I go in there and I go, here's what I'm giving back.
By the way, what am I giving back? Nothing. It was a thing for when she was four that's never gonna come up again, but it makes them feel like I'm lightening their load. You have to it's like you're buying
have be strategic. Yes. Right. You have to be strategic. And and here's what I see.
Three ways parents get this wrong51:30
I see parents go in two different things. I see parents go in, like, already angry, guns blazing, and they haven't even met anybody.
Not gonna work.
Right?
Yep.
That's not gonna work. I've seen parents go in completely uninformed, completely not ready, and just say, okay. Thanks. I'll take what I can get and go.
Oh, you're gonna get run over. That's like buying a car without understanding what the car cost.
Right.
Yeah.
Exactly. I've seen parents go in just really overwhelmed and really emotional, crying, fearful. I mean, it it's terrible to say, but we have to kinda put this back on the parents. You have to get yourself right.
Yeah.
You have to go in there strategically, objectively. You know, this isn't emotional for them. This is just another meeting. They have 40 in a day. Right?
And and so I think that's what you're doing. All of these years, you've gone in really strategically. You know, a thank you goes a long way. Taking something off somebody's plate goes a long way. You can disagree on certain points, but then also saying to someone, you know what?
You're right about that. I agree with you. Yeah. Goes a long way
Give some
when it comes to advocating for your kid.
Apply self deprecation to this. Like, right, you always like, and I always kinda put myself on the like, I I can't. I'm gonna tell you a couple of my negotiating tactics, Jackie. Okay?
Negotiating tactics52:55
Please do.
Thank you. When an ask when an ask is made, the next person that speaks loses.
Okay.
You have to be very comfortable in the silence. Mhmm. You just make your ask, and you sit there because the next person who speaks loses because it's always to give up. That's it. Mhmm.
So sit and smile and stare and look thoughtful because when they open their mouth, you just got what you wanted. That works when you're buying a car or anything else, by the way. Mhmm. That one to me, big deal. The next thing is is I always put myself in a slightly subservient position in the conversation.
Running it from the lower decks53:38
I I how do I say this? I run things from the lower decks. I let the people think they're in charge, and I work from people like to feel like they're in charge. So let them feel like they're in charge, and then move them in the direction you need to move them in. There's no this is not a contest.
It's It's not a thing you're trying to win or lose. You were trying to get what you need for your kid. And who cares how it happens? Right? Mhmm.
Remember how
As long as you get there, I don't care how you get there as long as you get there.
You remember how Faris Faris Gump's mom got those leg braces?
Oh, yes.
I do. It's me in one of those meetings.
Doing any of that.
You know, don't I'm gonna listen. I you know? But big picture. You know what I'm saying? Like, I I go, oh, I'm you know, it's I didn't understand your job is a very difficult one.
Blah blah blah. Like, you know, I you make people feel important, and then you and then you let them you let them feel important by giving you something. Because that's the other thing is what they give you in that room is free to them. They're not the one who's gonna do what the teacher has to do. Right?
They're the person who gets to bestow it upon you. Let them feel important, like, when your grandmom comes up to give you a check. You know what I mean? Right. And and and you just let her feel it.
Like, oh, I'm giving them a $100. Is that still the number? And, like, you know yeah. Right? I mean, how how much is it?
How much is grandma at the a $100?
I know. Right.
You know, the grocery store, it's $600. Leave with a bag. I I don't know what just happened. So Yeah. But but, like, you know what I mean?
Let them feel important. Let them feel in control. You don't need to feel like you beat them. Let them feel like they beat you as long as what happens at the end is what you need. Who could possibly care less?
And just walk out of that room and smile because you got what you wanted. That's it.
Right. And, you know, I try to approach it from, you know, for me, no just means not yes yet.
Mhmm.
And and we'll get there eventually. But one of my favorite phrases to use in that scenario that you were just talking about is just, hey. Help me understand. Help me understand your perspective on this. Help me understand your reason why you're saying no.
Help me understand why that doesn't work. And if you get those ridiculous answers like, why have 30 other students in my class, you need to know how to be able to answer that, how to respond to that in a way that moves them closer to your understanding. Mhmm.
And no no sarcasm and no, like, under your breath shittiness. Like, do know what I mean? Like, when you ask when when I say to them, oh, you know, it's I think it's I think maybe I didn't do a good job of explaining this. If that's how you're if that's if that's what you're hearing, I have not done a good job of explaining this. Let me let me try again because I know that once I do a good job of explaining this to you, you are going to agree with me because it I'm just I just I'm so sorry.
Like, always self always self deprecating. Always in the background. Do not don't try to hold the power in the room. There are so many people. Do ever go to a retail location and there's a person working there who you know, it there's certainly don't own the place.
They're not a manager, but they fight with you as if they're the one that paid for the building and all the people. And I sometimes while I'm watching that happen, I think, why do you care like this? Mhmm. It's a moment where they're in charge. Like, a lot of people don't get to feel in charge.
And Right. And they love it. They love it, Jackie. They love it.
Oh, it's a power trip. I mean, I can admit that I love. I'm definitely a person that loves to be in charge. Like, you can ask anybody in my personal life. They're like, Jackie will be will put her in charge.
My point is chill organization at all. But my point is everyone feels that way. And so you don't walk into someone's house and start telling them they're wrong.
What to do.
Right. And and what to do. You it's their house. Like, you have to find a way to let them feel in charge, let them feel like they're doing the thing they want to do, but leave with the thing you want. That's it.
Mhmm. It's very listen. Now here's the problem.
Like a great comparison because think about it this way. If, like, you have a diabetic child and you take them to someone's house that doesn't have a diabetic child, that doesn't understand diabetes. Right? Would you go to that friend's house and start yelling at them and bossing them around? Would you start crying at them?
Would you say to them, I trust you. You got this. Whatever you say works works.
Right. No.
If you take that same Like, so if you take that same issue of, hey. This is my five zero four meeting, But now you apply it to whether it's a grandparents house or an aunt's house or a friend's house, and you're going to that person's house and you are dropping your diabetic child off for eight hours a day. How would you handle it? Would you pick one of those three? Would you cry and be difficult?
Would you scream and yell and threaten lawsuits and say that you know the law because, you know, Gemini told it to you? Mhmm. Would you go in and just say, oh, I trust that you did your research on diabetes, so we're good. Whatever you say goes.
Yeah.
Don't You wouldn't do any of those three.
No. No. In their also, when you yell, I'm gonna sue you, people think, no. You're not. Stop it.
Yeah. It's like right.
So they say I've I've yeah. I tell people, don't say that. Don't say I'm gonna sue you because it takes $60,000 to sue a school district. Like, don't do
it. Right. You could just you could just hire a person to teach your kid for the next twelve years in your house if you wanted to, like, with that money. Well and that is the other point, like, I too. It's like, I I did not wanna feel like I was reinventing the wheel.
I mean, listen. There's things that happen that I'm proud of, like but it's little stuff. Like, in my daughter's district now, you can, when you take standardized testing, a teacher will be willing to hold your phone to Yes. Tell you when you have an alert or to communicate with an outside person for you about your diabetes. So when Arden takes standardized testing, the proctor holds her phone.
And when the when the test started, they would text me and say, hey. The test has begun. And I would say, I will track her blood sugar and let you know if she needs anything. And that way Arden didn't have to think about it. And then I could contact her and say something like, you know, just hand her a juice box and tell her to drink it or or have her bolus point seven five.
Yes. You don't have to stop the test for this. Or Right. There's a problem. Pause the test.
Something like and by the way, the number of times we actually did it were minimal, but it was set up like that. And prior to that, you could not have that phone in that room no matter what. I changed that. Like, it was hard.
And a lot of parents are battling that right now across the nation. Yeah. It it really is a big deal because we're turning into the you know, the schools are really kind of adopting, and states are making laws. No cell phones in the classroom.
Oh, it's gonna be a problem for people with diabetes moving forward. Like, it's gonna be a lot of those new new fights.
I think it's a I personally think it's a violation of section five zero four. Like, I think if you have to have your phone to sustain your life, it that overrules what your state law is, in my opinion.
But you know what they say next? What about what do we tell the other kids?
Mhmm. You
know what I told them?
Oh, yeah. I've heard that too. I'm not here to talk about other kids. I'm here to talk about my child that has a disability.
Oh, is that what you said? Like, see, you're a lovely person. When they said it to me, I said, well, tell them if they wanna get diabetes and spend their life battling with it. They can have a phone in the class too. Or you could tell them to shut the hell up.
I don't know how you're gonna handle it exactly, but that's what I would do. Good luck. So try to make don't try to make your problems my problems. Okay? Right.
Right. I got my own. Thanks. Yes. Yeah.
You want me in that You you're Jackie. Really? This, like,
texting, though. Like, I think if there's a takeaway that parents get from this conversation, is this like that like, you said that, like, that power of texting, especially with your older children. Right? Like, that power of texting.
Well It's episode four of my podcast that has that has nearly 2,000 episodes in it because Yeah. Early on also, I'm talking about texting like it's some magical thing. Okay? But know. Right.
But But back then, back when I was a kid and so, like, you have to remember that the first iPhone didn't do anything.
Yeah.
We I I'll I'll tell people this all the time. When I got my first iPhone, I was super excited to put my contact list somewhere digitally. That was it. That was that's what I thought was gonna be the huge takeaway for my iPhone. Okay?
Mhmm.
And and so as they add, you don't if you don't think of your phone this way, the apps are really the phone. The phone really doesn't do anything. Right? So Right. People started to text.
I know this sounds weird, but, like, it wasn't that common. And when I was trying to get over my fear of Arden taking care of herself, I used texting to break my own fear. So I'll give it to you in twenty seconds. I had trouble letting Arden go to other people's houses, and school was really difficult. And then one day, it was summertime, and she was upstairs.
And I looked at something. I think we finally had a CGM. And I thought Arden needed to do something, right, or to test. Maybe there was before CGMs. And so I texted her, and I was like, hey.
Test your blood sugar or look at your CGM, whatever it was. And then she told me the number, and I said, I need you to bolus, like, point four. And then I thought, well, she's only upstairs. Like, this is, like and then she did it. And I was like, oh.
And then we started doing that more often. Like, I was like, I don't wanna walk upstairs. I'll text her to, like, do this thing.
Mhmm.
And then we built this rapport. And then one day, I was like, why can't I just do this when she's at a friend's house? Like, this works here. Like, what's the limiting thing here? Because why do I think it's okay when she's upstairs?
I don't think it's okay when she's across the street. And then I was like, oh, it's this fear I have that if something goes wrong, I'll be there to save it. Mhmm. And I thought, well, she's at someone else's house. They know the vibe.
Like, no. And then I did that, and then I then it hit me. I was like, oh my god. I could do this at school. And right and right and it takes out the gaps.
Like, because the worst thing about the diabetes is, oh, I feel low. Walk to the like
Oh, I know. That's one of my nightmare stories where I've had teachers that say, you know, in in other districts that that say, oh, I'm sorry that you're at 60, but we you have to finish the test. Mhmm. Or, oh, you can get up and go to the nurse. Just go.
Like, no. They need someone to walk with them.
Like And then even at that, now this other poor kid is so now I'm missing the lesson, and this other kid's missing the lesson. This kid's not upset about it because they're like, oh my god. I'll go. I'd love to get out of here. Yeah.
Like, you're not in class. Yeah. Also, now my kid's life is in the hand in the hands of Becky with the good hair. Like like and trust me. If your kid falls over in the hallway, Becky's gonna go, oh.
Oh. I should probably go tell somebody. Maybe. Yeah. Who knows?
God God I've
sat in a meeting where, you know, they've said, oh, well, I think that when they're going down to the nurse's office to get their blood sugar checked, they're they're just dilly dallying. So I just don't know if we should do that anymore. You're taking a really long time to get I'm like, alright. Okay. And I do.
And I you can ask my husband. Like, I do go home, and I'm like, you know, the the professionalism does drop. And I'm like, I am going you're not gonna believe what I heard today. You know?
Well, my my point is there is like, hey, Arden. You're low. Drink a juice. You don't leave the room. Right?
Like and or and or you need to give yourself insulin. Do insulin. You don't need to leave the room. Like and and so you don't so you don't know this story, but in second grade was the second grade's the last time Arden went to the nurse. Right.
Because I realized between second and third grade, we had this this happenstance y thing happen where her second grade teacher moved up with her whole class. I don't know if that happened. Yeah. Mhmm. Yep.
So, very Arden was terrible at math. Very good at everything else. Really bad at math. It was confounding. But I was bad at math as a kid, so everybody was just like, oh, maybe it's, like, you know, wiring.
And, then third grade starts, and the teacher calls me one day, and she's like, hey, Eureka. Do you know that we were sending Arden to the nurse every day two minutes into the math lesson? She was missing the math lesson every day, and no one noticed. Time. Right.
Because the she 'd start the lesson, and she said and then the like, the timer would go off, and Arden would just get up and leave and go get her blood sugar checked and get, you know, adjusted or whatever and then come back. And then the lesson was over, and Arden would sit down and just try to do the work. And so it took it took a couple of years to, like, get that straight for her. She's also very good good at math now. But imagine if if the teacher doesn't move up, we just think for the rest of Arden's life, she's bad at math.
Bad at math.
Yeah. And and so leaving that room is a detriment. And and do it if you have to. I'm not saying stand there and bleed to death or anything like that. But, like, every day at, you know, at ten and at before lunch and after recess and before the bus, that's four times a day they're not in class.
Mhmm. It's either important or it's not. That was my argument. It's either important that she learns this or it isn't. Tell me which it is.
Right. And this is why she needs to have this phone.
Yeah.
You know, I think that when you speak to that fear and that control I I had a couple of thoughts while I was listening to you that reminded me of my own daughter. So we've only been diagnosed for almost three years now. And so she is gonna be a freshman in high school. And we went through our initial in middle school. Right?
Like, diagnosis and and learning all this in middle school. And I had a lot of that fear and a lot of that control of, no. I want you going to the nurse. No. You have to leave.
No. And, you know, she got burnt out on that real quick as a middle schooler. And in eighth grade, it was really, mom, I'm tired of going to the nurse. I'm tired. I'm missing class.
I'm tired of getting up. I can handle this in class. Yeah. You know? And it took her and I having that conversation to say, okay.
Take a deep breath, Jaxi. She can handle this in class. She can just like you were talking about, but you are doing that in second grade, and here I am holding tight strings on an eighth grader because of that fear, because of that control. And I think we also get into the position of parents of diabetics and really parents of any disability where that fear kinda takes over. Right?
And that control kinda takes over, and we're always running up to the school, and we always wanna be involved. And sometimes that has the opposite effect. Sometimes you really need to say, okay. You've got this. I'm gonna text you.
I'm just gonna give you gentle reminders. You got it. You know?
Yeah. No. We did that for a long time. But but but you said, you know, you were like, oh, I I'm doing it at this age. You did it at second grade.
Like, I just did it at second grade because I don't trust people. That's why. And and I'm not and I'm not coy about it. And and I thought it was not that I don't I trust people. I'm not like I don't walk around the world looking at everybody going, oh, they're coming.
Like, you know what mean? Like, I don't mean that. I just mean, like here's what I mean, Jackie. If you put me, your daughter, and my daughter in a rowboat And Right. Tell me that only two people can live in this boat.
It's gonna sink if all three of you stay in it. I will punch your daughter straight in the face and throw her in the water. I won't even will
probably do the same to your daughter.
Goddamn right you would, Jackie. Yes. You would. You a 100 you'd say, honey, grab her feet. This Arden kid's going in.
Okay? And, like She's going in. Yeah. And I want all of you to hear this. I make this podcast for you, but it also helps my kid.
So, you know and if it came down to I make the podcast and it helps her or it helps you, I'd pick her. And so would you.
Every time. And every parent, if they say they wouldn't. Liars. I don't believe that.
Yeah. Yeah. Yeah. Yeah. Yeah.
Yeah. Don't trust me. The nicest guy at the baseball field was the biggest you know what I mean? Like, oh, like, out in front of me, he like, oh, I do everything for everybody. Five seconds later, I'm walking across the field.
He's screaming at this kid in the car. Okay. Don't tell me how good you are. I don't care. We're all listen to me.
We're all good when we're not pushed. Okay? And that's that that's the way things work. And I'm happy that society has come along, and that doesn't mean that we're, like, you know, grabbing each other out of our homes and, like, you know, like, stuff like that. I like that.
But still in these little moments, these are very little human moments that are that are dressed up as, oh, there's a teacher. There's a doctor. They care about me. They do. Right until someone says, only two of you can stay in this rowboat.
And then your ass is going right in the water. Okay? And anyone who throws themselves in instead of you has a mental illness. I'm just gonna tell you that right now. Okay?
Because I'm living, Jackie. Alright? Right. Now and I agree. Yeah.
And by the way, if that boat only held one person, then I'd grab your kid and jump in with her. Okay? Right. But my kid's living. You understand?
And so Right. And so what you hear in all these conversations between these these administrators and the teachers, it it's nothing to be mad at them about. Right? Like, I'm at work. My job's hard.
I don't make enough money. I'm tired. My husband cheats on me. My wife has a mental Right. Whatever.
Issue. Right. I got problems at home. My kid limps. I don't know.
Like and now you're in this room telling me this is what you need and I have to do it, but there's no raise that comes with it. I don't get a bump in pay. I don't get a day off. Right. I'm just now I'm just now in charge of making sure that Scott's daughter's okay.
What the hell? I just wanted the week I just wanted the summers off and the weekends. Yeah.
Yeah. And I think that's perspective that you provide.
Goddamn right. And I
think that's honest. It it's true, and it's honest, and it's something that people need to hear. And it's something that they need to keep with them when they're sitting in this meeting and and say, look. I know. I know you've got all these kids.
I know you've got this. Know?
And don't be mad at
I am asking you. Yeah.
Don't be don't listen. Don't be mad at the water for being wet. Okay? Mhmm. Just that's what it is.
And now we have to and I need what I need. And now now I know the water's wet, I'm gonna I'm gonna navigate navigate it it the the right right way, way, and and I'm I'm gonna gonna get this done for us so that when I leave, my kids rowboat is nice and steady and as safe as it can possibly be. And then I'm gonna check. I'm gonna make sure it's happening because no but because trust me. Eight seconds into this five zero four thing, it's all out the window.
Like, the first week goes by, nothing goes wrong. You know what's you know what a teacher said to me one time? It was the nicest compliment and the worst thing that they could have said to me all at the same time. You know, Arden is such little trouble. I forget she has diabetes.
Oh, yeah.
And I'm like, I see the good part of that. And why are you not thinking about it once in a while? Like and then but but that's the reality of it. I am not mad at her. Right?
We don't we're not mad at the sun for shining. Like, this is what it is. Like, you don't spend your time yelling at them or telling them how they've gotta do better or be better or they'd if they had a kid with diabetes, they'd under doesn't matter. Just get what you need and get out. Please keep keep your head down for god's sakes.
Don't be a problem because, by the way, I haven't said this yet, Jackie, but there will be retribution if you cause a problem.
Yes.
Oh, somebody some petty person is gonna shit on your kid and you Right. In any way they can if you cause them a problem. And you're not gonna know which one of them is the one who would do that either, by the way.
And so hard to prove. Retaliation is Yep. So hard to prove. And, you know, to your point about they're bringing all of these, you know, things, whether it's their personal life or, you know, something going on in the classroom or now you're asking you to take care of your child. The other filter that it has to go through is when we think about, like, upper administration.
And and even though, like, ADA and IDEA says, hey, these things don't matter. It does matter because that's the thought process. Meaning, do I have enough staff? Do we have enough funding? Is there enough time?
What about the schedule?
Yeah. So They have real problems too.
All of the thought processes that are going through their mind besides let's get this language in the five zero four plan.
It's one of the reasons you don't ask for a first wheel. Like, you want it to seem you want it to seem manageable. Let's let's just manageable. And for me listen. I I again, I was a stay at home dad.
I wasn't in an office trying to focus on something, but I I'm not I'm not gonna lie to you. I spent a lot of my life with Arden in school monitoring something remotely or being back of the head, back of my brain aware that I'm still involved in this even though she's not here kinda thing. And listen. It wasn't great, but, like, it's what needed to be done because blah blah blah. Hey.
Listen. We're gonna I don't wanna run out of time for you. I feel like we've done a good job of covering this. I need you to tell people what you do, and then I'd like to show you my website and see what you think about
Sure. Absolutely. I've actually been on your website. So
I'll look some more.
Yeah. Yeah. Okay. Yeah. So thank you for this opportunity.
So I am a non attorney special education advocate. I specialize in IEPs and five zero four plans. I can attend IEP meetings. I can attend five zero four meetings. I can look at evaluation results.
I can help you write letters to schools. Because if it isn't in writing, it didn't happen. That's kind of my motto. It can help you find the right language and the words to communicate with your team. And so specifically, I have a grant through a community organization here that allows me to advocate for people that have children in the public schools that have diabetes.
They get two hours of advocacy services for free. Oh. And so I can have a phone call. I can have a Zoom. I've helped people in California and Florida, Midwest, all over that just needed somebody to talk to.
What hiring an advocate looks like1:16:26
Even if it's just not me coming to your meeting, you can we can just talk and vent and kinda do what you and I did today, Scott. You know? Check it. A little bit.
Is two hours enough for somebody to get help?
It is not. No? No. It's I typically need four to six hours. And and, typically, that's really what I need.
Right? Yeah. Just because you spend an hour talking to someone about the diagnosis story and the obstacles that they're facing in the school and learning about their child and getting to know their child and what their plan is. Well and then you, you know, you spend another hour crafting the next steps for them and and how are we gonna handle this in a strategic way like we spoke about. And then you spend an hour in the meeting, and then you spend an hour doing notes because that's a step that many parents are missing.
You wanna recap your meeting and put it in writing in notes and send it to the school. Okay. Because that way it's in your child's file. And then next year, if, say, mistakes happen, you have documentation in writing in the file. I told you about this last year.
Mhmm. And you're still not doing it, and here it is in writing that I told you about it. But that is a separate thing. We could do a whole other podcast on advocacy skills with section five zero four. Right?
Where to find her1:17:47
Well Yeah. Yeah. I so listen. What's your website?
I the name of my business is Inspire Education, but my website is inspire and then thenumber1inspire1learning.com. And I'm also on Facebook, and I'm on Instagram.
Alright, Jackie. It's getting it's getting it's getting thirsty. Don't worry. No. I'm just kidding.
Yeah. Fine. Jack. Fine. Listen.
I I'm gonna tell you something. I don't know you prior to our conversation, but but in the last hour and fifteen minutes, what I've learned is you think about this the way I do, and I got through it easily. So I'm Right. It makes me comfortable telling people. I don't yeah.
I think you know I don't have a lot of people on here to share their businesses. So Right. Right. Right. Yeah.
I I asked you about your contact information because of the conversation we just had. So Right.
Thank you for doing that.
No. Thank you for making sense and being realistic. Well, you're welcome. Because I don't wanna hear from you. My sister's a teacher.
She's so I'm sure she is. I wasn't talking about her. Okay? I was talking about the ones who aren't. I got two sister in laws that are teachers.
Okay? I think if they heard this, they'd be insulted. What am I gonna do? Alright? Like, it's still it was still my experience.
And I
And I go back to that at the beginning of the podcast when I was a teacher. I was teacher for twelve years. I was actually my state's teacher of the year. So I was a good teacher. I know I was.
And I had a that diabetic student, and I think she's in her thirties now, and I had no idea what I was doing. I got a five zero four plan. I had no training. Nobody really talked to me about it. It was just, hey.
She has diabetes. She can kinda take care of herself.
Sometimes you're gonna get Jackie awful. As a teacher.
I'm so sorry.
No. No.
I'm sorry I didn't take care of her.
Yeah. Yeah. Yeah. Jeez. Sometimes you're gonna get Jackie as a teacher, and sometimes you're gonna get the person who's having sex with the gym teacher.
I don't know what to tell you. That happens, Jackie. It happens.
It does.
Yeah. Yeah. Yeah. I'm just saying you don't know who you're getting is all I'm saying. And and empathy look out in the world.
Like, Jackie made such a good point. You're sitting there eve either screaming, yelling, crying, begging, whatever you're doing, and you think the person across from you is connecting the way you're emoting. And all they're probably thinking is, oh, lady, shut up. Like, we gotta get out of here.
When is this done? Yeah. We have till 03:45. Our contract hours are up.
Yeah. Yeah.
So let's move on. Okay. I mean, they've said that to me in meetings. Our contract goes till 03:45. Mhmm.
So we need to hurry it along. Yeah. I'm like, well, then we're gonna have a second meeting.
Yeah. All also, what that means is I'm not listening, and I don't care. I'm taking this meeting because I have to. So Yes. When you say you have to sometimes force people to do what they need to do, I don't know how the world got like this, but here it is.
It is. Yep.
Jackie, would you do you have a browser in front of you? Because I know you're on your phone. It's just
Yeah. No. I am on my computer too because I'm in my office. So let me get my browser. And I have to tell you with my teen daughter, that's what I've been, taking in from your podcast this summer.
Oh. We get in the car. We find different teen episodes, and we listen to it and we talk. And
I'm happy it's helping.
So great. So thank you
for that. Oh, it's a pleasure. So, again, I just had this like, I was I just I explained it at the beginning. I thought, oh, I have a five zero four plan that I researched all those years ago. Hey.
What about the Internet? What about AI? I bet you I could do something better. Juiceboxpodcast.com/504-builder.
Okay. I'm gonna go to that.
When you have it, you tell me.
It was just 504Builder?
It's 504DashBuilder.
Builder. Sorry. I missed the dash.
It's okay.
Okay. Gotcha. Alright. There you go.
So, basically, you pick what, like, band of school they're in, pre k, elementary, middle, high school. Right. You throw in their pronouns. You pick the insulin pump they're on, like, you know, Omnipod five, dash tandem Control IQ, MiniMed, Islet, Twist, all that. Just pick your pump.
Right? So I'm just gonna say Omnipod five, glucose monitoring, Dexcom g seven, but there's six, Libre three, two Eversense, other CGM finger sticks only. You can choose what glucagon you're using, ready to use injectable, nasal, traditional mix. I'll choose nasal. How much Yeah.
I'm doing my daughter right now.
Yep. How much talking a bunch of How much can they do alone? Adult does everything. Checks alone needs help dosing. Well, I chose elementary, so I'm gonna say checks alone needs help dosing.
Does the school have a full time nurse? You answer that question. Is there anything else true? They Do ride the bus, play sports, have hypo and awareness? You get to choose those sorts have a service dog.
Click that. Overnight trips also has celiac. Then you put in their names, their first name, second name, the name of the district, the school year, the case manager, the school nurse, the teacher, that kind of stuff. Right. Scroll down a little bit.
You choose your state. I'm in New Jersey. I choose New Jersey. It gives you a link out to another web page. It's the ADA for New Jersey.
It answers three questions for you. Does New Jersey allow school staff members who are not health care professionals administer insulin? The answer is no. Does New Jersey allow school staff members who are not health care professionals to administer glucagon? Yes.
And does New Jersey allow students to self manage in school? Yes. So the answers to those first three are no. Yes. Yes.
You go back to the thing. You tell it. The answers to that are no. Yes. Yes.
It tells you what it means for you, and then you keep scrolling. Choose your accommodation. I want standard only. I wanna select all. I wanna clear them all.
I wanna expand them all. Now you're gonna be met with, a through it's a lot, but a through v different sections. And you can open up a section a, government documents, and eligibility. There's nine things in there. I'm only gonna read you the first one.
Right? They're all checked as as chosen, but you can uncheck something if you don't want it in your plan. So the first one calls itself a standard idea. This plan is adopted under section five zero four, the Rehabilitation Act of 1973, and the Americans blah blah blah. And then it explains to you why that is in your plan.
District still open with she's doing fine. She doesn't qualify, that kind of stuff. So I Yeah. I leave that checked. But let's say I go down.
I go, okay. Those are all standard, but here's an ask for it. Student's name, which will get put in, parents will not be required to provide, arrange, or pay for diabetes care at school or to be present or on call as a condition attending or participating. Like, say you don't want that in the plan. First of
all because schools rely heavily on calling parents. It's a little dirty secret.
Right. So say you don't want that in the plan. Right? You uncheck it. Then when you get then you go through the rest of it, train staff and coverage, and then you just go through Right.
Check, check, check, uncheck, whatever you wanna do. And at the end, it just gives you the plan. You can copy copy it, download it, print it as a PDF, edit it if you want. It'll fill in your kid's information if you put it in up top. Now if you continue to scroll, there's a substitute teacher sheet to, like, give you just the Right.
Just the the basics. Scroll a little further, what what they'll say and what to say back. So it gives you a bunch of things you might hear. She's doing academically. She doesn't really need a five zero four.
Click on that. Under the ADA amendment act, eligibility rests on the substantial limitation of major none of this is from me. This is just aggregated from the Internet. Okay?
Right.
Yeah. And then before you walk in, there's things that gives you to, like, kinda prep before you go in there, lead with curiosity, separate needs from wants, hand them the training, like, that kind of stuff. Sentences that should make you sit up. Right? Said kindly, usually by someone who means well.
Each one describes something federal guidance says at and says a school can't do. Can you come in and give the insulin? A school may not require you to provide that care yourself. Free appropriate public education means free, including not requiring the parents to supply the service. So there's a bunch of things they might say back to you and how you can respond to them.
Mhmm. Then you can, it has checklist of things you might wanna bring to a meeting, so you can go through that. What if they say no? Go in order. Skipping wrongs can cause credibility.
When they strike an item, what do you do? So you choose an item that can get struck from the list. Sensor failure, signal loss, device errors are expected and routine. They wanted that struck from the thing. It gives you the item that they wanted struck, what you can say in the room in return to and then a follow-up email to combat that idea.
And then it shows you where all this came from. Basically, the receipts of how the website was built. That's it.
Mhmm. Is it This is an awesome resource. I mean, it's amazing.
Yeah. Right.
And I think this will help so many parents because it goes back to what we were talking about. You know, first of all, I don't write five zero four plans. That's not what I do. Mhmm. And a lot of parents think that that's the job.
Like, oh, you write the IEP. You write the five zero four plan. No. I don't. I just kind of help strategically negotiate the meeting.
Right?
Yeah.
So this is amazing. And I think it also goes back to, like, telling them what to say. Like, this is what you say when this gets said. Yep. And it gives them that power back and and the words back.
So love this resource. I'll be sure I share this on my stuff too.
Please, if you see something about it that could be easier or better or do you flat out think is wrong, please tell me. I'd love to know. But I wanna say
I'll play with it today.
Couple things. First of all, for those of you who don't like AI, that's all from AI. It's my idea and my direction to pull it together. And, hey. What about this?
Let's add this. I think it should have that. But I don't know how to do any of that. So Right. You know, I
maybe If they don't think that their schools are using AI for their IEPs or five zero four plans, they're wrong.
You're out of your mind. Yeah. Yeah. Yeah. So fight fire with fire as Metallica said.
Right. Okay? And other people. And so and so there's that. First of all, there's that.
Also, you could build your own if you want. It's not for me. Also, you can see where all the information comes from. Thanks to places like the ADA and, you know, who who have been, you know, putting this information on their websites forever, but it's hard to find, hard to get out. Also, ADA, why don't you just do this?
Why am I involved? And so but it was an idea. A guy asked me for help, and I I'm a person who sits at two computers. There's a computer I make the podcast on, and there's a computer I think and and, you know, and tinker with when I think I I don't know what I don't know what people think my job is. But in my mind, my job is get up in the morning, hear from people with diabetes, see what they need, try to give it to them.
Like, that's and that's where that website came from. So I hope you all love it and use it. And, again, feedback would be awesome. I'm actually having a meeting tomorrow with just a guy who's been on the podcast before who's just into all this, and he and I are gonna sit and look through it, and he's gonna give me suggestions about it and and back and forth. I'm I'm not the end all be all for certain.
And but but when I was making my daughter's five zero four, it would have been pretty awesome if this existed.
So Oh, absolutely.
And and what this conversation should have taught you is that Jackie and I, we just possess personality trait and a skill that not everyone has. And and that's why I'm sure she did great in her five zero four meetings. I did great in mine. And it's not a it's it's no slight on you if you're not that kind of person. But but don't go into those meetings and just let somebody run you over.
Mhmm. Because these these things can be really important. And maybe not every day, but, man, every couple of years when you least expect it, you're gonna be thrilled that somebody knows the stuff in that five zero four plan and that they're paying paying attention attention for for it. It. So that's my opinion.
Yeah. I think going calm, going educated, going with boundaries and knowing what you won't settle for and what you would be willing to negotiate with, and go in knowing that the whole goal is to level that playing field for your child and to keep them safe and healthy.
Yep. That's it. And don't forget nothing here in the Juice Box podcast. We advice medical or otherwise. Always consult a physician before making any changes to your health care plan.
Thank you. Jackie, I
And it's not legal either. Not
legal advice. Please. Legal. Nothing here in the way. Did you not hear me say medical or otherwise?
Nothing's advice. It's a podcast. If you're listening to me, you're out of your mind. What do you think of that? There.
Alright, Jackie. You're awesome. I'll talk to you soon. Hold on one second for me. Okay?
Okay.
Back of an episode today, wouldn't you say? Let's thank dexcom and the Omnipod five for sponsoring. That's right, my friends. We were sponsored today by the dexcom g seven. Dexcom.com/juicebox.
Head over there right now. Look into that fifteen day dexcom g seven. Fifteen days is a long time. It's like half a month. Don't check my math, but I'm pretty sure I'm right.
And let's also thank the Omnipod five. My goodness gracious. Omnipod five tubeless. A beautiful algorithm's updated now with that new 100 target. Get in there.
Find out more about it. Omnipod.com/juicebox. You want some tubeless insulin pumping? Yeah. You do.
Heck of an episode today, wouldn't you say? Let's thank Dexcom and the Omnipod five for sponsoring. That's right, my friends. We were sponsored today by the Dexcom g seven. Dexcom dot com slash juice box.
Head over there right now. Look into that fifteen day Dexcom g seven. Fifteen days is a long time. It's like half a month. Don't check my math, but I'm pretty sure I'm right.
And let's also thank the Omnipod five. My goodness gracious. Omnipod five tubeless. A beautiful algorithm's updated now with that new 100 target. Get in there.
Find out more about it. Omnipod.com/juicebox. You want some tubeless insulin pumping? Yeah. You do.
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#1970 Once You Step on the Plane
Once You Step on the Plane
Four weeks after his diagnosis in 1992, thirteen-year-old Christian flew to England alone for language school. Today he lives in Switzerland and travels constantly — and he has a system.
Jump to a moment
- He left home four weeks after diagnosis. Christian was diagnosed at thirteen in Germany after a summer of unquenchable thirst — freezing water because he couldn't get enough of it — and, weeks later, traveled alone to England for language school. His host mother was an emergency room nurse, arranged partly so it wouldn't go off the rails. He credits that trip with putting him on a path of not being afraid.
- He was diagnosed at the right moment in history. His hospital was one of the first in Germany to specialize in intensified insulin therapy — basal and bolus — staffed by enthusiastic doctors and nurses. Scott points out that a few years earlier and he might have spent decades on older regimens. He later moved to a pump to avoid injecting several times for a single meal.
- Thirty-four years, with the last fifteen in the fives and low sixes. His early A1cs were higher; routine and technology brought them down, and he's been in the high fives to low sixes for about fifteen years. He now DIY loops with Nightscout and shares his data with an endocrinologist who is open to it — she describes him to others, fondly, as the patient who does all these crazy things. What he wants next is technology that takes him out of the process, and insulin that knows when to stop working.
- His time-zone rule for long flights. The moment you step on the plane, the new time zone has started. Flying east means shorter days, so he gives long-acting earlier and aligns to the new zone; for short trips of a day or two, he stays on home time and doesn't adjust. Setting a phone to the destination's time zone helps. This is one traveler's approach — work your own plan out with your care team.
- Practical lessons from a lot of airports. Glucose tablets are fast, easy, and nobody cares about them at security. Insulin is less fragile than the packaging implies, though heat still deserves respect. He once cracked half his pods on a summer vacation because he didn't know aerosols affect the material. Scott's rule to add: if you're bringing one spare pod, bring two.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Juice Cruise 2027 — Travel with the Juicebox community — July 21, 2027, from Orlando.
- Juicebox Podcast Facebook group — 86,000 people who might have your experience — private, free to join.
Every word of the conversation
Cold open & sponsors0:02
Hello, friends, and welcome back to the juice box podcast. If you don't love today's episode, you can have your money back. You should not, in any way, shape, or form, take anything you hear on the juice box podcast. As medical advice, I'm talking about medical advice, regular advice, any kind of advice. This is a podcast.
Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. I cannot stress that enough. Three fast things. Juiceboxpodcast.com/juicecruise.
Check out the cruise. T1dexchange.org/juicebox. Fill out the survey. One other thing. I don't know.
I said three things. Now I only have two things. Oh, why don't you go follow the private Facebook group and the public Facebook page? Juice box podcast type one diabetes. There's two.
You'll see. One has, like, 87,000 followers. One has, like, 30. Today, we've got a great podcast, and it's sponsored by great advertisers. US Med, the Eversense three sixty five, and Twist.
You know about Twist? It's an insulin pump. I'll tell you all about it in a second. I'm having an on body vibe alert. This episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the only one year wear CGM.
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Hi. My name is Christian. I was diagnosed with type one diabetes in 1992 at the age of 13. And four weeks after my diagnosis, I traveled from Germany to England without my parents for summer language school. I've traveled ever since, living and working across seven countries in three continents.
Alone to England, four weeks in2:44
Oh, no kidding. How old were you when you're diagnosed?
I was 13.
13 in '92. 2002, '12, '20 '2.
One on second. So I'm 47 now.
Thank you.
Almost thirty five years
ago. You, Christian. I see you saw me struggling. You're like, let me jump in. I
I I did the math prior to coming out of the call.
Thank you. That's awesome. I I, you know, I I just popped up your your kinda your intake here. You said maybe the funniest thing that I've that I've seen in a while, how did you put it? The how how scared people are of scanners in the airport.
Yes. Yeah.
I I I I can't wait to get to all the traveling that you do when we talk about it because I have to be honest. I I sometimes think the same thing. Like, I I I don't know exactly how to feel. Like, I don't want people to be scared, and I certainly don't want them to go against anything that might be in a package insert or anything like that. But, you know, I've watched my daughter go through, you know, hand scanning, the big body scanners, the old scanners.
Nothing's ever happened. So,
you know I totally understand why it's scary because there's so much information out there. Some it's conflicting, and it's a stressful situation. So I think if we can, you know, educate and help people a little bit to take some of the stress off, that would be very helpful.
Yeah. No. I agree. I you're not wrong either. You're standing in that line, and if it's in your head in a moment, I'm gonna walk through that scanner on the other side.
My pump's gonna stop working. My CGM's gonna shut off any of those things. I can you know, it it's a big deal. And some people are not excited to get a hand pat down either. Although I Yeah.
And in some some regions, that's even frowned upon. So I've been to airports where it's really like, really, do you have to? Okay. We have to get find somebody, and then already it's a bad situation.
Oh, they don't even wanna do it. I actually I I I almost, I almost left the airport with a date, I think, recently. So I the gentleman gentleman was very thorough. He found he found everything and there was nothing to find. So
Well done. Yeah. Yeah. Yeah.
So tell me a little bit about being diagnosed back then and what it was like growing up with type one.
Diagnosed at thirteen, in 19924:55
When I was diagnosed, think, 9010, '92, you know, I was a skinny teenager, tall, not lots of skin on my body, and I was physically very active. I was playing soccer. I was playing basketball. And, you know, I've heard it so many times, but people attribute that then to the symptoms that are coming up. And I had experienced lows during school.
I didn't know what it was at the time, but I realized afterwards that I I was having lows. So there was something going on already in my body, maybe one or two years before that. And then at the beginning of the year around February, I had a really bad virus infection. I remember that. I was really knocked out cold for two weeks, feeling really, really bad.
I can't remember what it was. But then a few months later, late spring, early summer, remember the weather getting hot, and I was doing lots of outside activities, and I just started getting really thirsty. And then the peeing started, the weight loss started. And my parents recognized that something was going on, but they kinda assumed it was from the sports and that they thought I was maybe doing too much exercise. And looking back, all the obvious signs were there, but nobody was around knowing what these signs meant.
I remember putting water into the freezer to freeze it over because I couldn't quench my I was so dry in my mouth. I was literally drinking ice cold water and not being able to quench my thirst. And that's been going on for a few weeks. And eventually, had other friends pointing it out to me. One friend said, you've just finished a quart of milk in one zip, in one go.
What's going on? And that's when I started feeling really uncomfortable as well. And then eventually I got those those flu like symptoms. I got really tired and I stayed at home for a couple of days. And eventually, one night after my parents had gone to bed, I started being really sick to the stomach and only bile came out.
So the body clearly was reacting to something. Something wanted to come out. And I went through this for a few hours. And then early morning, I woke my parents in the middle of the night cause I was feeling so bad. And my mother looked at me and she told me afterwards she saw my chest and hip bones showing out.
They were protruding from under the skin because of all the weight loss and the dehydration. So she rushed me to the ER where I was luckily immediately seen by the head doctor. And what I remember was that he bent over me and he smelled my breath and he said, this is likely diabetes. And then I passed out. That was the last thing I heard.
Really? Oh my gosh. Yep. How long were you out?
I didn't know what it meant.
Yeah. Of course. Well, you didn't have time to wonder either. How long were you out for?
Than twenty four hours. So I I got to some point the next day.
Oh, it still feels like a lot. It feels like such a long time to to be on your your parents must have been beside themselves.
Yeah. The my my mother was was terrified. And when I woke up, then I was in the ICU, and then I learned that I had a glucose level of around 700 plus. I can't remember the exact number. Obviously, was in severe DKA.
So there was a lot going on, but luckily I made it in time.
Right.
And then I got hooked up to IV for fluids and nutrients at least for a couple of days just to get my body back to to a normal functioning.
It's interesting. You were pretty thoughtful about the process even at a young age, the way you were thinking it through and talking about it and and even your friends. I mean, when when you're counting on, you know, young boys to to notice things are different, That's, sounds like a a fairly, adept group of kids for some reason. Would you guys all grow up to be engineers or rocket scientists or something?
I don't think any of us are rocket scientists, but, I did have some or still do have some very smart friends. Interestingly, the girl that pointed out to me, not one of the boys, so she was mostly the the most empathetic of the group. Mhmm. And I I think for them, it was just weird, you know. Me seeing me standing in front of a fridge downing a full quart of milk like it was nothing.
Yeah. And they they found it funny, but also a bit disturbing.
Jeez. That's something. Diabetes, as you know, comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US Med has done that for us.
When it's time for Arden supplies to be refreshed, we get an email. Email just rolls up in my inbox. It's like, hey. This is, you know, time for your supply order. I don't exactly know what it says.
Open the email. There's a big button. I click on it. I reorder, and I'm done. Finally, somebody taking away a responsibility instead of adding one.
And boy, oh, boy, has US Med done that for us. An email arrives, we click a link, and the next thing you know, your products are at the front door. That simple. Usmed.com/juicebox or call (888) 721-1514. I never have to wonder if Arden has enough supplies.
I click on one link, I open up a box, I put the stuff in a drawer, and we're done. US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs like Libre three and the Dexcom g seven. They accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call that number, (888) 721-1514, or use my link, usmed.com/juicebox. Using that number or that link helps to support the production of the juice box podcast. This episode of the juice box podcast is sponsored by the Eversense three sixty five.
Get 300 and get three hundred and sixty five days of comfortable wear without having to change the sensor. When you think of a continuous glucose monitor, you think of a CGM that lasts ten or fourteen days. But with the Eversense three sixty five, it lives up to its name, lasting three hundred and sixty five days. That's one year without having to change your CGM. With the Eversense three sixty five, you can count on comfort and consistency, three hundred and sixty five days a year.
Because the Eversense silicone based adhesive is designed for your skin to be gentle and to allow you to take the transmitter on and off to enjoy your shower, a trip to the pool, or any activity where you don't want your CGM on your body. If you're looking for comfort, accuracy, and a one year wear, you are looking for Eversense three sixty five. Go to eversensecgm.com/juicebox to learn more. You still friends with these people?
Yeah. Most of them.
No kidding. That's pretty cool. Out of the hospital, do you remember what the marching orders were? Like, what is it like, what were your goals? What were your your targets?
Yeah. The first thing I remember in the hospital, in the ICU, was maybe a day later. A nurse came up to me and she told me that now it's time to inject myself with insulin for the breakfast. And I said, what? What's what's happening?
I don't think anybody so far had properly told me my diagnosis. And I told her, no. No. This is not happening. And she was the one then explaining to me, you know, if if I wanna eat, I need this injection and that's how it's going to be the rest of my life.
“That's how it's going to be”12:27
And that was my first confrontation with a new situation. What is So I took the jab or she gave it to me.
Yeah. I was gonna ask what that confrontation feels like internally.
It was really weird at the time because I didn't understand the implication or the the vastness of the consequences. But at the time, my reaction, I say it was more like, okay. If if that's how it is, you know, authority figure, then that's that's how it's gonna go.
Okay. Okay. You're not not a lot of, like, internal struggle or just you you needed somebody to put it to you once you understood you okay. This is what I'm gonna do. I'll move forward with this.
Yeah. And I remember, like, over the next few months, several doctors telling my parents, you know, there's going to be this reaction and Christian is gonna throw everything away and say, I'm not having this disease. I don't care any longer. That interestingly never happened for me. So I think I was accepting quite quickly, and it never really changed.
You know, there's fatigue and all that that comes with the disease, but I I never got to do that situation where I just rejected it outright.
How often do you think the fatigue comes and how long does it stay?
I didn't really think about it maybe for the first twenty years or so, but now it's something that I think about more often. And, you know, I I love all the devices that I have now, but part of that fatigue comes from having the devices and comes from having the information and and the frustration that comes with, you know, not having that great glucose level that you were looking for after lunch.
Mhmm.
So I would say more fatigue now than in the past for sure.
Okay. Is your health better, but the fatigue is different?
It's mental fatigue. Yeah. It's it's it's this exhaustion of having to deal with it all the time.
Are there ways to give it away for stretches of time or no?
I haven't found them. No. I I would say I'm I'm quite serious about managing my diabetes or at least I have been for for the last decade or so. And I I want to be in good control. I want to have good outcomes.
And that also then requires me to deal with it quite regularly.
So when it's not a in stretches of time when it's not a burden, are you paying less attention to it? Are you willfully putting it out of your head? How do you how do you make the gaps?
I think the burden comes from not achieving my goals. So having diabetes, I've I've had it for forty years almost, so that that's that's not the issue. And it's knowing what can come with bad control, understanding the consequences, aiming for good a one c's, and then, you know, having lunch and running back with a 200 blood glucose level and not knowing why that happens even though you've done it a 100 times the same thing. That's what's exhausting me.
The genuine you're genuinely trying. If the outcome isn't where you'd like it to be, where you expect it to be, or where you've seen it go in this the same situation previously, then it makes you think about long term issues, and that's the drag.
Part of it. I think it's it's mostly frustrating for me. So, you know, having a certain food, knowing how to manage that, eating the food, and not ending up where I want to be. And seeing it on the graph, you know, that you got the the double arrows going up or down and trying to manage that, knowing the roller coaster is coming and maybe not being able to get out of it quickly enough, that I find exhausting.
Do the people around you know this is happening to you?
In a limited degree. So I've always been very outspoken about having diabetes and what it means, but the daily ins and outs, I'd say even my family only have a limited understanding of how it feels like.
How old you have children?
Yes, I do. My wife and I, we have three children. The oldest is 14. His name is Lucas. And then we have two girls, Laura, who is 13, and Lily, who is eight.
How much to share with his wife16:37
If you let your wife in to the depth of how this feels, would that be comforting to you, worrisome? Why doesn't she have that kind of access?
I've always been private about the numbers or or where I am with it. I don't think I wanna bother anybody too much with it. I I don't think she would mind necessarily, but I've I've never done it that way. And we've been together since we are 17 years old, so I think we are a little bit past the point of of me letting her into bed.
Well, what she she'll hear this. Right? Yeah. What do you think her reaction will be?
I don't know.
I don't either. I'm super interested.
It's it's yeah. It's it's interesting to find out. Right.
Yeah. I mean, is she going is she gonna come to you and say, you you should tell me everything. I want to know. Do you think she'll just stand back and respect the fact that you haven't come to her? And I I just the the thing I wonder about is is, like, what happens at the end when eventually something like this comes out and you realize that the person you were with wanted to know and would have liked to have known, it could have unburdened you.
You could have done it more together, and now it's too late and you can't go back. That's the feeling, the the too late feeling is that I worry about.
Yeah. I don't know. I that's that's not the worry I have that that she feels excluded. We we talk about the disease occasionally and, know, especially if I'm having a rough day, I share that with her. But what I don't do, for example, share my DexCom results with her.
She has a life on her own. She's traveling also a lot for work. So from a practical perspective, I never saw much value in sharing that with somebody in my family because they wouldn't be physically around in case something actually happened. And also because I've been growing up with diabetes many, many years before that technology, I never felt the the need of having that information shared to anybody else. So I might be a bit old fashioned that way.
May yeah. Maybe. So if you get very low, no one is warned but you?
Well, only through the beeping. So for example, at night if something happens, then, of course, all my devices starting going crazy. And then my my wife wakes up and and wakes me up if that is necessary.
There's no value in her having a follow-up that just has a 55 alarm on it? And then if you get, like, urgently low, she'd know?
I never saw as really valuable for me because we don't spend much time physically together, and I'm very sensitive to lows. So I I don't sleep through lows. For example, I wake up fairly early on. Mhmm. And that way, I can pretty much control it myself.
Yeah. And she's traveling a lot. I'm traveling a lot. So she she might get alarms at all sorts of times that I can easily manage myself.
Okay.
And and that's why I never set it up.
Has it ever been an issue? Have you ever been in a situation you couldn't help yourself?
Only twice in the thirty five years.
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That's visit.twist.com/juicebox. Don't forget, Twist has two i's.
And both of the times she was with me, and she was able to help me.
And she helped you. I I wonder, people who haven't been married a long time don't know what you just said. I bet you're not physically together very often. I I there are days that I'm in the same house with my wife all day long, and I don't see her for ten minutes.
Mhmm.
Yeah. It's it's No.
No. That's possible. But it's also she has a job where she needs to travel a lot. And just, you know, being physically in the same country is mostly on the weekends, not during the week.
Interesting. Yeah. It's something. Your children, have they been tested for antibodies? Is that a thing you ever thought about or or or considered?
Yep. My oldest was tested a couple of years ago. He started reporting something that I thought might be hypos and, you know, remembering my own hypos before my
When one of the kids had symptoms22:01
Your diagnosis.
Being diagnosed. Exactly. And that made me nervous. So I took them to the doctor and and they checked them out. I put a Dexcom on them for a week or so.
All the stuff that freaked out type one parents do with their kids. And the doctor eventually said, okay, let's just do a test, see if anything's coming up. None of the five reacted, so he should be fine as far as we know now. I might do it also for the girls when they grow up a little bit. But so far, they don't show anything whatsoever.
That's good news. Other autoimmune for you or your family members?
Not for me. My older sister so I have two siblings. And my older sister, she used to have or has thyroid issues. I think it's hypothyroid, but I'm not sure. And my younger sister has clinical depression, which is not necessarily an autoimmune issue, but I know it's linked to that.
I've heard quite a few people talking about that on your podcast, so I found that interesting as well.
Your parents' celiac, thyroid, anything like that?
No. Nothing that I'm aware of. Also, in the wider family, seems to be really just me with diabetes and and the the hypothyroidism, my sister's side.
Just something special about the pairing of your parents, I guess.
Yeah. Probably. Yeah. Well They tried their best.
They tried their best. Can you imagine? Can you imagine if that was a prerequisite for dating? You know, you had to get screened to see if you had autoimmune issues before you got together.
I wouldn't be surprised if that's happening in the future at some point.
Yeah. Well, listen. I've You
know, bring your DNA to the first date.
I've told both of my kids. I was like, if they have any sketchy autoimmune things and you're not interested in raising a buy a baby with diabetes, I would I'd slow down a little bit. The the, your I'm sorry. Your kids, don't have other autoimmune stuff either. Generally healthy.
Not a thing you're thinking about totally. Okay. I think I got all that. Tell me about how you manage today and how that's changed over the years. So you're using a CGM and a pump, I imagine?
Yes. I do now. But I've only done that now for the last ten years maybe where I started with CGM and then later on moved over to a pump as well. So when I started in 1992, that was just around the time when a big study came out. It was called diabetes control and complications trial, DCCT.
Does that mean anything to you?
I I don't I know the time frame, but I'm not I didn't know about the study.
No. So essentially, that study was the first big longitudinal study that showed over many years that you would get much better treatment results when you actually manage your diabetes with basal and bolus. And not the old, you know, once a day or twice a day and then regulated mealtimes, etc. And I was lucky in the sense that when I was diagnosed, my hospital was one of the first hospitals in Germany to specialise on intensified insulin therapy. So effectively what we now know is basal and bolus.
Early to intensified therapy25:22
So they started me out with ACTRAPID and Protophane, I think it was called, from Novo Nordisk and having to test my blood sugar four to five times per day. And that was new at the time. So that was the cutting edge of science. And they kept me in the hospital for about two weeks to teach me about carb counting and insulin. Right.
And all the things that we now take for granted. And because it was new, I had really excited and enthusiastic doctors and great nurses teaching me lots and lots of things that I really benefited from. And I stayed on MDI for the majority of my care all the way through school, all the way through university, later on work. And also because I always felt I don't want anything on my body. I want to have physical freedom.
I'm doing fine with the needles until eventually my body started to really change in how I process especially fat and protein. Mhmm. So I needed to have, you know, double boluses and so on to cover these meals, and I got so fed up with having to inject me multiple tiles for one meal that I eventually considered a pump.
That's the only thing that moved you over to it?
Mostly. Yeah. Yeah. Well, for me, it was, you know, I looked at pumps maybe twenty years ago and the the doctor told me, you know, here's this pump and you need to change the insulin every twenty four or forty eight hours. You need to change the tubing every seventy two hours.
You need to change the battery every forty eight hours. Now this is way too complicated for me. And that basically stopped the conversation then for another ten years. And then when I came back to it, there was at least the Omnipod. And then I was looking to get something, you know, which was not an additional device that I needed to carry.
And eventually, technology progressed to a point where I felt, oh, this is kinda neat. I just slap it on my arm. I have everything on the phone. I can run with this.
I think it's interesting to to realize that wherever you get put in the beginning is where you generally stay and that it takes something or a lot of time to move you along. And to say that Yeah. If you had been diagnosed just a few years sooner before the basal bolus idea, you could have been regular in Miles per hour for those fifteen or twenty years.
Yeah. And that's the scary thought. Right? Yeah. You you really need to push yourself sometimes to make that step in in technology or in in the way you manage it and and get forward.
You have to pay attention to how things change. Resist the urge to jump at everything, but be able to step back enough to see a big picture and realize when things have taken a leap and you've been left behind. It's, not easy to do because who's gonna tell you about it? Right? You you know what
I mean?
Yeah. Like, your doctor's gonna say, you're fine. We don't think about we don't think about Christian anymore. Christian comes in, does great. We say, yay.
Good job. Move you on the way. Make sure you have your prescriptions, etcetera. No one thinks they go, oh, wait. We've changed how we've done everything until there's some giant push from organizations to move people, you know, like you talked about into pumping, for example.
And, you know, and some doctors' offices will ignore it. Some will never hear about it. Some will decide not to tell you about it. You don't know who's who. And it it's a I listen.
I'm particularly I'm particularly touched by this because as I've shared on the podcast, I think a fair amount of times when right at the end of my high school career, which would have been around '88, '89, my friend was diagnosed with type one. Yes. And he's he's just not here anymore. He you know, he he lived regular in Miles per hour for a long time. A long, long time.
I didn't even realize. And when they finally tried to get him to just go to MDI, it was completely confusing for him. And he was causing himself to be low all the time and having different issues. He was having, you know, episodes and falling out of bed. He crashed his car.
He had all kinds of problems. And and then, you know, before you knew it, his, you know, his kidney started to have issues and then his heart. And and and I just as as you're talking, I think I'm thinking about Mike, and I'm thinking, gosh. If he was diagnosed four years later, he would have been on the other side of that curve. Isn't interesting?
Yeah. Yeah. It's just really something.
That's a scary thought. And back in the day, if if your doctor didn't tell you, you didn't have any opportunity to find this out yourself. Sure. And these days, we have all these opportunities to learn if we want to. And this is just ads, you know, you can hear about five different CGMs, you know, just listening to your podcast, maybe.
And, you know, that's already great information that there is choice. You know, not everything is for everybody. I've tried things and felt, okay. I don't wanna use this, but I found something else that works instead. Yeah.
And I speak to so many people who say, I've tried this once. I didn't like it, and then I stopped. And then then you don't move forward, and then you get into all these problems that you've just mentioned.
Well yeah. And that's the next problem is that there's, I mean, five things to try, three CGMs, you know, all this other stuff, and you make you you finally get yourself to move once. And if you don't land on something that's great for you or if you don't even I mean, maybe it was great for you and you just didn't know how to accept it. There's a lot of things that could happen in there. Right?
And then you'll shut yourself back off for ten years again. And and then, oh, I'll just I'll put my head down and keep doing the thing I do. You know? And I don't know. It's a it's a really I'm going to say scary, but I think there's a bigger word that I can't find.
It's it's incumbent about it's incumbent upon somebody, and I don't know who that somebody is, to keep saying this stuff out loud so the next person can hear it so there's not a giant gap in time. I I just I the way I've learned to say it is that I I don't think you wanna wake up one day and realize everyone's doing it differently than you.
Wake up and everyone's doing it differently31:27
That's probably Then you're stuck.
Right.
If if if you're if you're the last one, you probably won't change. And if there's comfort in the continuity, right, that's why people also don't change because they know what they're doing or at least it's less scary than the unknown that they're faced with. But I totally empathize with what you're saying. And and for me, it it was an endocrinologist who kept on saying, well, how about that pump? You know?
Wanna have another look? And and eventually, I was ready for it.
Yeah. Mike Mike wouldn't wear a CGM. I tried really hard to get him to wear one, and he just he wouldn't have it. And now he's shooting NovoLog, and I don't even know. He's probably using Lantus.
I'm not sure. And but he was shooting it like he was like, it was still old school. So, you know, then, you know, he used to you know, the way he had his car accident is he was, you know, he's out getting his books. He's a comic fan. He's out getting his books one Saturday morning and, you know, decides he's gonna go to the diner after this like he does every Saturday by he's out by himself and, does what he always does.
You know? He would have shot his insulin and, you know, at forty five minutes later, sat down at the diner and ate. And, you know, now he's using NovoLog. Yeah. And it was too late.
And the reports had him 90 miles an hour down a a residential street disappearing into a cul de sac coming back out crashing into somebody's front lawn, you know, and he's lucky he didn't die that day.
So Yeah. That that sounds like a very confused man.
Yeah. Didn't know what he was doing. He'd been doing he'd been doing one thing for decades, and then someone without any direction just said, here, use this now. And he applied old ideas to new, you know, to new tools. Didn't work.
He didn't know what he was doing. He got caught in that loop where he was just chasing lows and panicking and not knowing what to do and, you know, it's just it's it doesn't need to be that way, I guess. So Yeah. Yeah. Anyway
I started out with a with a freestyle Libre in my late thirties about ten years ago, And I was amazed when I when I first laid my hands on that. I remember paying for it out of pocket because I just wanted to have it. That was such an improvement in quality of life, not having to prick my fingers five times a day, getting to see the curve, you know, and understanding timing and amount. And, you know, you always say it's that simple. Right?
That's that's all that it is. But this was the first time I could actually see, oh, if I do something now, it has an impact later. How can I bring these two together? So that was for me really a game changer.
And that was the you had to scan that one to get a number. Right?
Yeah. At the beginning, you have to scan that. And then a little later, they moved it onto the phone and then you could just scan with the phone. But even that was amazing at the time. You know, now it's all automated.
But I think the big step was then really just just see the graph over time throughout the day.
What do you hope happens next when you look at your technology? What is what's the next thing you'd like somebody to give you?
That's a difficult question. In the short term, I think better devices, all of them, you know, have their quirks and and could be improved upon. On the long term, I would love to something that love to have something that's so automated that I no longer have to worry about it myself. So right now, with the Dexcom and the Omnipod, I use Loop, and that's pretty dialed in, but it's it's still, you know, fairly intensive daily management. You need to know what you're doing.
What he wants next35:05
You need to put into the carbs and all that. And I would love to get to a point where I can eat and the system recognizes something is coming in and does it in a quick enough way that, you know, the reaction is fast enough. And the other thing I love to see, and I've I've read that once in a research paper a couple of years ago, there's a UK company that has created insulin that basically can shut itself off after a certain glucose level. So if you drop below, let's say 55, the the insulin that is still in your body would stop reacting and stop being used up. And I thought that's such an amazing technology because it basically would get rid of the lows.
And if if we can get that done, that would be amazing.
The idea of smart insulin. I haven't heard people talk about that in quite a while. That was a a a big push, I'm I'm gonna say, like, ten years ago now, where that's yeah. Well, we just shoot it in there, and it works when you need it. And when it doesn't, it shuts off, it'll and be like having a pancreas and everything.
But is the thing you read more recent, or do you think it was older?
It was more recent. It was maybe a couple of years ago, company from The UK. They said they have a breakthrough, but it was all on the academic side. Right? So not on a viable product side.
Yeah. Well, I mean, that's the rest of it is all that research that has to go in and people, it has to be viable enough for them to keep working on it and And and, you know, and then the and then the industry will change. GLPs have changed the industry now. Right? There's such a focus on on those medications now, and I wonder how many things get dropped along the way and never get figured out because I yeah.
I don't know. Smart insulin would be awesome. But if that happens
would be awesome.
I'd I'd be stunned. But I I appreciate the idea of, like, if you're asking me what I want, I want I want technology that works more quickly, that takes me out of the process, insulin that knows how to not make me low. So what you're telling me is those the the pain points that you mentioned earlier about, you know, having to be involved and being low. Those are your two things that you'd love to change. Yes.
Yeah. I can't see a different argument, really. Don't get high. Don't have to think about it. Don't get dizzy.
Yeah. Somebody That's almost perfect. Yeah. Somebody do that for me, please, quick. Yeah.
I'd love to give that one. Last night, Arden was I was working late, she passed by my door. I tried to talk to her, and she was, I I I can't talk. I'm low. And she was going downstairs to get food.
And even though she went downstairs, I heard her laughing. She came back up. She went to bed. She was fine. I think her blood sugar went up to, one thirty.
It leveled back out and came back down overnight. It's to hear you talk about it gives me some context about what that's gonna look like, you know, thirty five years from now. And it's gonna look like no matter how well I'm doing or how intelligent I am or how much I understand this, that burden's gonna be a burden. It doesn't stop because I do a good job of it or because I understand what's happening to me. It's still a burden.
Yeah. And I think as as long as we don't have something like the functional cure from the addendum trial actually being a real thing, it's going to stay that way. And I think it's, you know, it's much, much better than it was forty years ago, twenty years ago, ten years ago. So we're definitely progressing in the right direction. But in the end, it's something we have to deal with, and and some of us deal with it better than others.
It's probably also very different if your child has it. Probably heartbreaking hearing your children saying these things, and you don't know what you can do in that moment to help them. But, you know, they also will figure it out for themselves.
That's what I'm starting to believe. Yeah. How about that? Well, tell me, I guess, how the process of growing up, did it have any impacts on your long term health? Do you have any complications?
Did you get lucky? How did those years go?
For the most part, I got lucky. Just now I'm starting to see sort of the first signs of long term effects. I can see my digestion slowing down. My doctor wants to test me for Graspoperides. And I also feel now much more sort of coldness in my feet.
Neuropathy is a topic that I need to discuss. Mhmm. And I still feel really well in my feet. It's just that they cramp, they get cold, and my doctor said that's possibly one of the side effects of diabetes.
Oh, jeez. And how old are you again?
47.
47. Do you have any idea what your a one c's were were like in the first twenty years?
Three decades of A1cs40:07
Yeah. So mostly for the first five years, they were in the seventh. Then later on, when I then sort of finished high school, went off to university, they got worse, probably in the high sevens, in the eights. You know, the entire lifestyle took a toll on my diabetes management. Too much fast food, too much alcohol, too much fun.
And then when I was in my mid twenties, probably, you know, started working properly, had more of a routine. I went back into the sixes. By the time I was living in The UK, I had a very nice sort of general practitioner doctor who was supporting me, basically saying, you know, you have a a one COf six Something. That's all good. Do what you need to do.
You know more about this disease than I do. That was the care at the time. And then a few years later, I moved to Switzerland. Here, we have a very good health care system. I found a good endocrinologist who was also pushing me a little bit.
I'm expecting a bit more from me. And now for the last fifteen years, I was in the low sixes or high fives, five eight, five seven, usually around that. And I'm quite happy with that.
No knowledge of variability back then, though. If you had a seven A one C, you don't know how you came by it. Were you low a lot? Or do you think you were very variable?
I was quite variable, and that was always my main challenge. That was then where where I'm having a CGM really helped me because I could see things change over time and react more quickly. In the past, I was yo yoing for days simply because I figured couldn't figure out what was going on. And, you know, I would crash. I would eat something.
I would go up again. I would try to counter it again. And that's something which I can control much better now with the existing technology than I did in the past.
With your hindsight, have you gotten have you get a pump or a CGM more quickly than you did?
Well, I I got the CGM, I think, quickly as as they got up here in the market. Mhmm. And then when I when I got the pump, I didn't really see that having a big impact on the variability. It it really helped me with some of the foods and and the digestive issues, but not so much with the variability.
I see. So the the CGM taught you what you need to know. You were accomplishing it with a pen or injections or something.
Exactly.
Yeah. Then you gotta start making a bunch more injections around meals that irritates you. That puts you to a pump. When do you go to looping? When do you try AID?
I started about three years ago.
Oh, okay.
And quite quickly after having the pump. So that was really my aim. I said, I want I want to have this pump, and then, you know, as as soon as possible, I want to change. And at the beginning, the technology wasn't right because you needed to have another link in between that I couldn't get here in Switzerland. And eventually, they said, now we can do it through the iPhone.
And as soon as that happened, I jumped on loop.
Your doctor told you about looping?
No. I found that myself. My doctor is quite open to it. So when I started looping, I set everything up including NightScout, and I I shared my access details with my doctor so she can see what I'm doing there. She's not super involved on that side.
I think she she leaves that to me, but she appreciates me getting into that. And, you know, it's she learned something from that as well when I tell her about the new algorithm experiments that are coming. And over time, we've developed a good report on that.
Nice. Do you think you helped her to tell other people about it, or is it just a thing you guys do together?
I I do think she talks about it to other people, but more in the sense of, you know, I have this one patient who does all these crazy things.
Have I told you about Christian? It's interesting, but she sees your outcomes and and, I mean, you're you're clearly doing better now than you were before. Is that right? Like, outcomes wise? Say so.
Yeah. What about
So if you look at
Go ahead.
If you look at a one c, certainly, I went, you know, with a pump and then later on with with a loop from the low sixes to the fives. So there there was an improvement. And she sees that and she appreciates that, which, you know, allows me a bit more freedom. Know? So in the past, she wanted to see me every three or every six months, and now she says, okay.
As long as everything is fine, you know, come by once a year to renew your prescription for everything else. Just text me or send me a message.
You said earlier about going away to college, and I wonder, you you know, knowing yourself back then and being older and smarter now, is there anything that, like, today you could have said to that kid back then? Like, hey. Would you like your feet to be warm when you're in your forties? Or, like, is there would there have been any way to get through? I realized that that kid didn't have the tools and the technology, but he also didn't know what was happening.
Do you think there would have been any way to explain it?
I don't think so.
I don't either. Yeah.
It's it's it's super hard. I mean, I I think for the situation I was in and the tools that I had, I did quite well even at the time. And when I listened to the friends around me, they always considered me to be quite a conscientious diabetic, even though, you know, I did as many silly things as anybody else, whoever was on the podcast. But overall, I think I always took it serious, and I was always nervous about long term complications. So I wouldn't just ride high for hours on end and not be bothered.
So if if my blood sugar goes up, I want to act to get it back down. And that was always the case for me. On the other hand, I think what I didn't understand then and what I do understand better now is how the disease over time just impacts you mentally and physically. And that's not something you can explain to a 20 year old. You know, you're you're in that state of your life where you're amazing and life is endless and you have limitless energy.
And you don't sit down with this kid and tell him, you know, worry about this and worry about that. That conversation is not working.
And I wonder what it would even do. Like, say you could get through to that kid. What would that would there be a benefit in that or not necessarily, or would it be, you know, person to person? It's I I guess I'm I'm trying to, like, listen to your story, and you're a thoughtful guy, and you've been paying attention to this for a long time. You know how you feel.
You know what's happened to you. I'm wondering if you have any advice that would help somebody in that new situation now, but I I it does feel like a it does feel like there's no way to answer that question or or to come up with something that would just, I don't know, be, like, super impactful to a younger person.
Yeah. When I when I do speak to people who who've just started with diabetes, mostly I direct them to you because I think you can distill things in really good way when talking about it, especially when, you know, in your earlier episodes when you talk about how your daughter grew up with diabetes. I think this is extremely helpful for parents who have young children with diabetes, just to take that fear away. And that is maybe one of the main positive aspects looking back over the last thirty, thirty five years. I didn't have a lot of fear that was stopping me from doing something.
You know, I was concerned about a lot of things and I needed to take care of a lot of things. But I was never so afraid that I wouldn't live my life. And I see many people who are diagnosed with diabetes or listen to them on your podcast, especially when their kids are being diagnosed, they're almost catatonic from fear, you know, of killing the child, of doing the wrong thing, you know, of the terrible lows at night. And I think if you can give people a bit of peace of mind and and giving them the opportunity to look past the first six months even though it might not be easy, that's as much as you can do.
Yeah. No. I I agree. And I I don't know that it's I don't know that it's possible in every situation to not start inside of that fear in the beginning. That makes that just makes sense.
I I I really feel like getting to getting to the understanding of how insulin works and what technology can do for you and the idea that you don't need to be afraid, you can be a little bold. I think the sooner you get those things together, the sooner you can kind of move forward and hopefully break free of the fear quickly as possible. I mean, it's been my theory. It's funny. I'm asking you what you would do, and you're like, well, I would tell them to listen to your podcast.
Like, that help that help me at all, Christian. I'm trying to dig here. So I'm sorry. No. No.
No. You know, I just I have heard people say, I started listening to bold beginnings episodes in the hospital, and then I listened back to the the the podcast. And I hear some people who were have described being scared, and I think I never really felt that way. And so I'm I tend to believe that. I tend to believe that if you get people right away and you put them on a good path, it's very possible they could avoid a lot of the pitfalls that that others describe.
Yeah. And that was that was really my story back then. So when when I was in in the hospital, as I said, they had this really nice setup there and they they taught us a lot. And then during the second week after my diagnosis, my mother approached the endo because we had planned the summer school program for me in The UK. So I was meant to stay in The UK for three weeks, traveling over from Germany, living with a host family and attending language school during the day.
Language school, and an ER nurse host50:23
And my mom asked, you know, would it be better to cancel that trip, baby? And the doctor thought about it for a couple of minutes and said, your son needs to live with this disease his entire life. You know, he will likely be honeymooning. What's the worst that can happen? If we can train him to prevent lows, you know, send him on his way.
Do you think that did you think that decision helped put you on that path of not feeling afraid?
Definitely. Definitely. Because it it kind of told me, you know, first of all, you'll be alright. You can continue living your life. And as well as, you know, this is this is manageable.
And then there there were a couple of, you know, benefiting factors. So they found me a host family where the mother was an ER nurse, and and they would make sure that it wouldn't totally go off the rails. But eventually my parents were comfortable enough to let me go. And having this experience, you know, of almost independence at 13 for a few weeks just after this diagnosis, that really told me I can do anything, and I just kept on doing it.
Yeah. And I think Otherwise. The the lucky piece there is that in those three weeks, nothing terrible happened. Because if you Absolutely. Yeah.
If you tell that whole story and seven days into it, you have a seizure at the at the host family's house, well, then you're not here telling me how you felt empowered your whole life and you weren't scared. You're gonna it would literally be a different story.
Yeah. Yeah. You're probably right. Yeah. My biggest challenge at the time was that in The UK, they had something called no sugar chocolate.
And I thought, oh, this is awesome. I saw it. I bought it. You know, I can eat this. And it turns out that instead of sugar, it had maltose, which is highly diuretic.
Mhmm. So that was a learning experience.
You got the you got the British version of the trotz. Is that what happened?
That's right. So I spent a couple of days on the toilet just cleaning that out.
Yeah. People don't know. They they just don't know. I listen. I had a crazy experience once where I was landing.
I went out on a I don't know. I just went for a flight somewhere. Don't remember where. And in the, like, on the last fifteen minutes of the descent, I had some candy that I didn't realize had that in it. And my gosh, like, I got into the airport.
I was like I was like, something's wrong.
And it You'll be running fast. Yeah. No kidding. No kidding.
I don't know why they bother with all that prep for, colonoscopies. They can give you a roll of lifesavers made with that stuff. Be on your way. Yeah. Probably.
So let's finish up talking about the travel. So you've lived in how many countries and traveled for business? You traveled for pleasure? You traveled with people alone?
Yeah. All of the above. So after, you know, coming back from from the summer school, my next big day was to do a foreign exchange here in The US. Both my parents were at university in The US in the seventies, and I always dreamt of, you know, doing that, learning about the American way of life. And then in 1995, I got a placement in California and went to live in California for a year, stayed at the the local high school for the final senior year.
And, I basically travelled there with a big suitcase, half of it with diabetes supplies. I brought twelve months of insulin and six months of testing strips and all sorts of things. And then the rest got shipped to me from my parents throughout the year, I had enough supplies while I was there. And what was interesting, when I arrived, I spoke to the high school nurse and, you know, she was aware that I was diabetic, but she didn't know anything about that. She had nothing to do with it.
There was no four or five plans. There were no other kids with diabetes. Basically, she told me, you know, do your thing. Don't bother me. If you have a problem, you can come.
Yeah. Leave me alone. Leave me alone. I'll leave you alone, kid. Yeah.
Exactly. But but again, for me, was reinforcing. Right? So, yeah, you you can do it. Don't worry about it.
And then, you know, while I was in The US, I I traveled around from West Coast to East Coast, visited some people, And I built up this sort of travel routine at the time, you know, like, you know, bringing twice the amount of insulin that you need and, you know, what what to keep on you versus what you put into the suitcase for check-in and so on. And one thing I I wrote down to me at the time was, you know, always take glucose tablets with you when you travel because that's fast, it's easy, and nobody cares about it when you go through security.
Oh, it's not a liquidator. Yeah. Yeah. Yeah. Right.
Yeah. And then when I started listening to to your podcast, I I did it chronologically at the beginning. In one of the first episodes, you talk about, you know, carrying juice boxes into the airport and how complicated it can get, you know, to to get that through airport security. And I thought, ah, see, should have taken those glucose tablets. But, of course, that's very different when you have a little child
Yeah.
Versus a grown adult.
She didn't love those tablets. I don't I don't know that I I'll be honest with you. I think Arden's had diabetes for twenty years now. I don't think she's had two glucose tablets in her life. No.
Yeah. So she just never like, she she tried one once and was like, oh, not this thing. And then we had to find something different. That's how we got to the juice and how we got to, you know, the other things that we ended up doing.
Yeah. She's Like I said, that age, you just use whatever is working. Right? Oh, sure. There's no choice involved.
Yeah.
Have I have definitely opened up a small container full of juice boxes at the, you know, at the TSA and been like, look. I have to get these on the on the plane. Like, this is the only thing I know for sure is gonna get me through this flight if something goes wrong. Then they swab it to make sure it's not an explosive. It's a lot of fun, really.
Glucose tabs through security56:11
Yeah. They don't make you drink one, but, you know, I'm always surprised that one said open one up and drink it. I was was waiting for that, especially because, you know, not for nothing, but Arden was diagnosed in 2006. And, you know, the nine eleven thing was pretty fresh in people's heads. Yeah.
Close enough to 2000. You know what I mean? So Yep. Yeah. It was different going to the airport back then for and it you know, for a while.
I think overall, but my experience with, you know, TSA people or security people at airports has been mostly positive. Yeah. I was surprised how very little they care about the needles. So in in the past, I really cared, you know, a lot of needle tips or or syringes with needles. And I don't know whether they just didn't see them because they're so tiny over the you know, they didn't care.
But I was very rarely asked about what this is. Why do I carry this? And in the past, I had these, you know, documentations from my doctor translated into various languages. You saw it the Abednego, but nobody cared. Nobody ever cared about it.
So eventually, I just left it.
Christian, I listen. I'm a proponent of this idea. If you're gonna shoplift, just pick it up and walk out the door. Because once you start hiding and acting nervous, then people are like, what's going on over there? If you just act like you're supposed to be there, you'd be surprised how hard it is to get people to look up.
Like I think that's good advice for many situations in life. Sure enough. Just act like you're you should be there and people will accept it.
Act like you belong. Nobody's asking a lot of questions. Nobody's paying attention, really. I I'm I am incredibly interested in people. And even when I'm out in public, I am paying attention to my wife once said to me, she's like, do you look at every car that drives past us?
And I was like, yes. I assess every individual in every car that drives past us. And she's like, why? I'm like, I don't know. I just like to see people.
And so I look around a lot. If I'm walking through a parking lot, I look at everybody. I walk into the grocery store. I figure out what I try to imagine what people are thinking, what they're doing. Like, I don't know why.
That's a hobby. Whatever. But all I can tell you is with all that research, I'll make quotes around that. What I can tell you is no one else notices I'm doing it. No one's looking
That's interesting.
For the most part. People are people are in a bubble that is pretty close to them. They have their they're locked in their own thoughts. They have their own anxieties, their own schedules. They own they're they're worried about they're walking through the grocery store thinking, I think I think she's cheating on me.
Like, you know what I mean? Like, they're the the people are having those lives right there. They're not looking up very often. Anyway, if you wanna
still That's what I like about traveling because it gets you a different perspective. I I kinda tend to look more at these details when I'm in an environment that I'm not used to
Mhmm.
Because you're less on autopilot. Yeah. So my wife and I, in the last thirty years, we've been to so many places that sometimes we just, you know, sit on a square somewhere and look at people, and you get exactly these reactions. Right? And sometimes you can make up the stories about people saying, oh, look at him.
Yeah. He looks like he's they're just coming back from his mistress, now hiding. I love doing fun as well.
First of all, nine times out of 10, when you actually can make eye contact with somebody, they're thrilled for it. People light right up. They smile. Their eyes brighten up immediately when they make eye contact with another person. Almost always.
Once in a while, someone looks at you like, alright, creep. But that's not what's you know what I mean? But but, you know
Yeah. You don't wanna be that creep.
Yeah. Yeah. You know, you just you just said, like, you made me think of there's a game we my family plays in restaurants where we look around and try to we choose people like we're drafting them to be trapped on a desert island with them. It's like kind of like who would who would you wanna take with you? And then you try to, like, say why you think just from looking at the person.
It's a lot of fun. I don't think we've ever probably been right about one person, but it doesn't stop it from being fun. My question to you though is you said you wanted to go to America to experience the American way of life. I wondered if you could can you quantify what that means? How is it different than where you grew up or other places you've been, or is it not?
It's probably less different once you arrive. But at the time, you know, growing up in the eighties in in Germany, the The US was like the holy land. This this is where you had the genes and Coca Cola and opportunity. And both my parents spoke so fondly about their time there. And for me, it was always a place I wanted to visit.
And I think in 1993 or 1994, we had a longer summer break where we as a family went to The US together. We traveled from Kansas City to San Francisco by car over three weeks across many, many different states and beautiful different reserves. We saw the the different locations, and I really enjoyed that. And I just wanted to go back for a longer time.
Yeah. Is it really any different? Like, could I not drive across Germany and have the same feeling that I have driving across America, or is it is there a lot of different landscape here?
The US is so vast. I think you have all the landscape, which just depends on where you are. Yeah. But I I think, you know, it can be quite different. So I don't think it's the landscape.
It's, you know, when you come from Europe, you're stunned by the size. You're stunned by going into the Walmart. You're stunned by the school size. It's all so much bigger. And at the time, this was exciting for me.
And of course, learning a language, that was really exciting for me. And getting to know new people, and it's it's also part of growing up, you know, spending time away from your family. That was all really cool.
Yeah. That's awesome. I saw scope is really the biggest part. That just everything just feels bigger and more spread out?
That that is certainly one aspect. Yeah. Even now when I come back, I still travel to The US maybe once a year. And and and just the the scope of the continent and everything that is inside The United States, know, including all the pros and cons, I think is is such an amazing amalgamation. You can be in the middle of nowhere, the next neighbor is a 150 miles away, or you can be in a skyscraper in the city of millions.
Yeah.
And it's all it's all one country, and I always found that amazing.
Are the people do you find are people just people? Like, because you said you've you've lived in a number of different countries. I mean, obviously, like, the the bits and the bobs are different. Right? But, like, at their core, people pretty similar?
I think so. Most of the people I've met on my travels have been kind, have been genuine, have been helpful. You know, of course, I've I've I've met some thieves on the way as well, so not everything is great. But both of the people are are good people regardless of where they are. And, you know, how they present and and what they do is different.
Yeah. I get to meet a lot of people, and I have to say, I I don't I just don't think that I don't think we're all very different, you know, and in a good way, in in a in a way that's comforting, to be perfectly honest. So yeah. Well, I know you have to go get your kids, so I don't wanna keep you too much longer. So this is where I'll ask you if there's anything we haven't talked about that we should have because I don't wanna cheat you for what you wanted to come on.
You seemed really excited when we logged on to do this, so I I appreciate that.
I still am.
Oh, oh, good. You're you're having a good time?
Yeah. Definitely.
Awesome. How long ago did you find the podcast?
I think around four years ago, 2021 Mhmm. I found the podcast. Yeah. It was was during the the COVID shutdown. And I just, you know, was looking for an additional resource to learn more about diabetes.
And when when I started listening to it, I think that the first kind of nugget that I picked up was around protein and fat. Okay. And what what was so interesting for me was when I was diagnosed back when I was 13 in the hospital, they told me about what they called the pizza effect. And the pizza effect is basically protein and fat, right? You need less insulin at the beginning and then you need more later on.
And I learned this and I knew how to handle pizza, but I never once thought about transferring this to other foods. For me, this was purely about pizza.
That's interesting.
It's it's really weird. Right? I never made the transfer. And surely, the doctor said, you know, I've taught them about the pizza effect. They'll be set up for life.
They know how to manage protein and fat, and it took me thirty years to figure it out listening to your podcast. So that was really interesting.
They just needed to call it something slightly different. You would have been right on board.
Maybe. Maybe. The label pizza effect sort of narrowed it down in my mind. Yeah. And that's that's, you know, maybe what happens when you talk to a 13 year old.
Listen. Not for nothing. Like, somebody handed me NovoLog and said this is insulin, and I never wondered if there was another insulin. I just I just assumed this was insulin. They gave it to me.
They called it insulin, and why would they, you know, why would there be others if this one works? It just little little simple things like that, but put you, again, on a path and you don't think about it again, and you look up however long later and somebody's saying to me, you know, have you ever tried a Pedra? And I was like, what's a Pedra? And they're like, what's it's insulin. I was like, well, there's I have insulin.
I have NovoLog. You you know? And they were like, no. There's this one too. I'm like, oh, how would I know that?
You know? So it's good news.
Insulin isn't that fragile1:05:53
I wanted to talk a little bit about what I learned from traveling. Please. Maybe pass on some some good ideas there as well. And the first one is really basic, and that's take enough supplies, which should be obvious to everybody who's travelling with type one, but also know that insulin is much more resilient than what pharmacies want us to believe. You know, when we pick up the insulin, it's always super chilled and they ask you, do you know how do you know how to get home with that?
You know, can you cool it on the way? And that gives you the impression that it's super fragile and one ray of sunshine will destroy the insulin. And that's just not the case. I mean, is being used across the world, you know, many places much hotter than ours. And insulin has fairly good shelf life.
So as long as you can keep it cool on room temperature level, you will be fine. And I I've been in the situation, you know, where it got warm and I got really nervous. Is it still viable? And I read other people's messages saying, you know, it's it's stayed out in the open for five days on the table. Do I need to throw it away?
And the answer to that is no. You know, you can really keep keep using it, and that can help you when you're traveling.
There are some studies just about that that I have to admit I I'd like to maybe dig into more to tell people about because you're not wrong. A lot of times, people freak out. And then the minute they have an experience where their blood sugar doesn't do the thing that they want to do, they they'll they'll they'll leap over 20 possibilities and go right to my insulin must be bad. And that's Yep. What a what what a weird leap.
You you know? But not if you were told because or what happens right away? You have to keep this cool. Well, I just put it in my insulin pump, and my insulin pump's outside with me, and it's not cool outside. How and
Still working.
It's still working. Something's you know?
How about that?
Yeah. Hello. Yep. And then and then like you said, they leave it on a table for a day, and they go, this must be bad. It's really interesting.
Yeah. Oh, well, I'm gonna dig into that more. I'm glad you brought that up. What what what else you got?
So so the insulin doesn't have to be super cool, but I think it helps a lot if you stay cool in the TSA line. Because if if I am stressed standing in the line, they get stressed. And I've been there myself. You sit there and say, oh, now they're gonna pat me down and what do I tell them and how do I say it to them? And most of the time, if if you're relaxed, when your kids are relaxed, it goes so much more smoothly.
And if they need to check you physically, my go to approach is always to just tell them upfront, I have this pump here. I have CGM there. And then they're usually super careful and very friendly. If I just walk up to them and stare at them in the mean face, they might accidentally rip it off. So just, you know, thinking about that while you stand in line.
I know it can be very stressful. That at least helps me, you know, preparing for that encounter.
Yeah. It'll be fine. It is it should be your take away.
In most cases, that that's it. Right? Yeah. And when you read about, what people write on your Facebook page, flying wreaks all sorts of havoc for diabetics, right? Some go high every time, others go low every time.
And we try to explain it and find justification like you just said, right? We lead directly to this must be it. The scanner destroyed my CGM. You know, the pump pushes more insulin during the flight. So even though cause and effect is not clear and all, we want to have that cause and effect very clear in our mind because it gives us comfort.
And
I really think, you know, traveling can be very stressful and stress messes up our glucose levels. And that's probably the reason for most of what we see when we travel. And I've changed CGMs and Omnipods at the airport mid flight. I've I've gone through all the different machines without any problems. Maybe I was lucky.
But I also think both of them don't cause any problems with your machines. There could be a correlation somewhere. You walk out of it and then, you know, you knock your arm and then it falls off. Yes. That happens.
But it's not everybody who goes through a machine will have a problem.
Yeah. Expect good things and often good things will happen. Yeah.
That's right.
You could just go read a stoicism book if you want and just try to apply it to your life or, you know, T shirts, slogans, or whatever makes you feel more comfortable. But in the end, it's probably gonna be okay. And chill out. I that's so far so far I've heard
you say usually not as easy as that, but that's the gist.
Yeah. But that's the gist. You have to find listen. You gotta find your way to that, whatever that is for you. But in the end, I take your point.
You know? First of all, if you look nervous, they're gonna wonder what's going on. It's their job to find people trying to sneak through doing stuff. There's also plenty of people doing things you don't realize, so now you've suddenly put yourself in the bucket with those people. Do you have any idea how many people try to bring a gun onto an airplane every day?
It's an astonishing number.
Probably more where you are than where I Yeah.
Well, it's an astonishing number. And often, it's they're mispacked. Like, people will, like, have them in bags and not realize it and stuff like that. So that person that person at that gate is thinking about that while you're there while you're there going, I hope I hope they don't care that I have a juice box in my purse.
Yeah. We got that with knives.
Yeah. Oh, yeah.
People tend to find knives in their suitcases or in their backpacks all of a sudden.
Oh, yeah. Society There
it is.
Societies that can't shoot each other love to stab each other. Exactly. Go ahead. What else you got?
Once you step on the plane1:11:35
So when it when it comes to flying, especially long haul, my mindset is always once you step on the plane, the new time zone has started. And my experience is the sooner you act like it, the faster your body will adjust to it.
Oh, what a simple What a simple smart idea. I'm cutting you off, but what a simple smart idea. Go ahead. Go, please. Yeah.
So
if if you're on MDI, you know, if you're going west, the day gets longer, add a second shot, long acting, maybe half of your normal dose or whatever you may need at the beginning of the flight. And if you go east, shorter days, which are often overnight, now give that long acting early and then align onto new new time zone. And that way, your your body can start. Of course, it's not that easy. Right?
The the body will still take some time to react to it. But my experience is when you get ready from the get go, it takes less time.
Is there a way to lie to your pump about what time it is to get ahead?
Well, with my pump, I can just change it on the phone. Yeah. The time on the phone, you know, change the time zone to Australia or wherever you wanna go, and that works.
Just like that. Well, that's such a brilliant thing. How long did it take you to figure that out? Is it like a day where you're like, oh, you know what I could do? And then you started doing it?
Yeah. I I think I think fairly quickly. I think first time when I came back from The US when when I was 16, 17, I remember being up all night before traveling back because I was so excited and saying farewell to my friends. And then I figured, oh, it's you know, it's it's early morning here in The US. I'll probably fall asleep on the flight anyway.
So this will just be my nighttime. And then I flew back to to Germany. And I woke up in the morning and that worked well for me. The only exception to that rule for me is if it's a short trip. So sometimes you just have to go somewhere, you know, for a day or two, then best to stay on your local time and not adjust at all.
Yeah. That that might be easier.
Travel is I mean, I won't say hard on the system, but it is obviously impactful. You know, people's bathroom habits, like, you know, eating habits, sleeping styles, a lot is impacted very, very quickly.
Yeah. And some people are impacted much stronger than others. My wife, she can travel all over the place and she's usually fine within twenty four hours. It takes me longer. We have other friends who are knocked out for a week when they do long haul travel because it's so exhausting for them.
Yeah. No. No. For sure. Absolutely.
What else? Anything? You have a lot of good stuff here.
No problem. Thank you. Let me just have a quick look here. Just anecdotally, I think for people traveling to Europe, if you lose your gear and it does happen, it has happened to me before, it's been stolen, I lost it, I dropped it most pharmacies will help you out with the gear, but they struggle with insulin because that's regulated. It's a medication.
So depending on which country, easier or more difficult. Here in Switzerland, they have a very neat system where you can basically self declare that you need it. You fill out a form, you pay for it out of pocket, and then you have it. That's very neat. And Europe goes into that direction.
So in more and more countries, you know, with a sympathetic pharmacist, they will help you out. They'll give you the incident at least to cover you for the next couple of days, and then in that time, you can figure out your emergency plan. So that works really well now.
Okay. Oh, that's awesome. It used to be like that here. Because when when my friend was first diagnosed, like, I I real I remember him saying you don't you didn't need a prescription for the insulin. You needed it for the needles.
Yeah. Yeah. It's how it was at one point.
Interesting. Yeah. So the the the the most important and the least important part. Yeah.
Exactly. Oh, one without the other is pretty useless. I guess they figured it's funny because you said the TSA people kinda don't care about the needles. Like, I think the only damage you can do with an insulin needle is if you're a bullseye from the Daredevil comics. I mean, if you're not if if right.
If you don't if you if you
don't kinda have that kind of accuracy, I don't know how you're gonna hurt anybody too badly with an insulin needle.
So I don't know. If you you have 10 or so in your hand, I think you can wreak some havoc.
You gotta really go for it though, Christian. You know what I mean? Like, you're gonna you have to be on a mission, I guess. Yeah. Yeah.
I take your point.
That's true.
That's funny. Yeah. Well, I mean, it's it's encouraging to hear somebody that moves around so freely on planes and through time zones and country to country. And you've never had a problem to to speak of?
I did have problems, of course. Once I I lost my gear right at the beginning of a flight, and I was traveling through Hong Kong Airport and sort of all all my testing equipment, I left on the seat. I walked out of the aircraft and right when I was in the departure or in the arrivals hall, I realized. And the only way you can get into the airport is with a ticket. And I was trying to talk to this gentleman, you know, with a big gun at the entrance.
Please let me through. He only spoke one sentence in English, which was show me the ticket. So eventually, I just showed him a ticket from a departure a few days later. And he looked at us, oh, ticket. Great.
He let me in, and I could recover it. But but, you know, you lose things. Things break. A few years back when I was on my first Omnipod summer vacation, I cracked half of my pods because I didn't realize that aerosols would impact the material. And then, of course, you wonder what are you doing.
So I went back to MDI for a couple of weeks until we got back home. So these things happen. But I was always lucky enough to to feel comfortable enough to not have it stress me out.
Yeah. And you brought you brought a lot of I'm a I'm a I'm
a I extra supplies.
I bring extra. Yeah. I I joke all the time. Like, if you vacation with us, I could probably handle two or three more people with diabetes if I needed to. But I'd rather just carry a because in the end too, it's know, Omnipod, there's not a lot of stuff.
There's no, like, you know, infusion sets and tubing. It's just pretty small packaging. So you can carry Exactly. You know, you bring Yeah.
If you take it out, it's easy.
Yeah. You bring 10 pods with you and everything goes right. You've got a month's worth of pods with you.
So Yeah. And I usually put them into the That's where they can stay.
That's a good idea. I and I always do the thing I heard you say earlier too is I carry stuff on. I carry enough on that if things got sideways, we'd be alright for a few days, and then I pack the rest and carry on. And that way, I have it in two different places. Well.
Yeah. Yeah. There's you know, I take some insulin with me. I put some insulin in the carry on in in the, you know, in whatever gets in the belly of the plane, try to put that on ice. Nobody cares if there's ice in your checked bag.
Like, there's, you know, like, a lot of little, like, things you can do. So, anyway, it's it's it's in the end, I'm just gonna tell you something that is not gonna be completely comforting to anybody. It's just not that hard. Like, just go do it. Like, you're you're gonna mostly, I see people online create their own problems.
I went on vacation. I only brought one CGM with me. Why is that? Like,
go Yeah. Those those posts are scary because you feel okay. A little bit of planning, but, you know, life can be so difficult sometimes and things happen. So
Yeah. Just ask yourself. I've brought one. What if this one fails or I lose it? Maybe I should have two.
That's true.
Yeah. Yeah. Like that very simple idea. I I would never even on a day trip, if you're gonna bring an extra pod, you're bringing two. Because if it's important enough to have, it's important enough to have a backup in case something should happen to the first one.
And Yeah. And I think most people feel, you know, if if if you cannot go back readily to your home, you know, just just take a spare.
Have some stuff with you. Fine. Yeah. Yeah. I just I yeah.
I hate to say apply common sense, but apply common sense to it. Then go have a good time and travel. I mean, listen. Would I go to a would I go to a war torn country where no one speaks my language and I'm not sure about my safety? Maybe not.
You you
know take at least three pots. I would
You're saying take just take a few more pots. You'll be fine. Hide them in your parents. It'll be okay. Oh my god.
Christian,
you're So my my watch is beeping reminding me that I need to pick up my daughter. Be be before we sign off, I just wanted to say great work hosting the Juice Pod podcast.
Thank you.
It has given me a lot and your work really makes a huge difference and I really appreciate it.
Well, thank you so much. I I can't tell you how how much that's gonna make my whole day brighter. It really is terrific to know that that it's valuable for you and that it's finding its way out of America too is really is fantastic. I, I try not to talk about it too much, but I am super proud. I think I think the podcast charts in usually 35 to 40 other countries every day.
No. It's amazing. Yeah. And you're rightfully proud. I think it's it's really amazing what you've built.
Thank you so much, Christian. I really appreciate your time, and, you know, go ahead and get your kids. I don't want you to I last you thing need is to have this lovely afternoon and then go get yelled at for being late.
So Thank you for your time.
Thank you so much.
Great
day. You too. Take care.
Care. Bye.
Bye. To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox, or give them a call at 18774. That's +1 (877) 489-4478 and tell them Scott sent you. TWIST requires prescription and is indicated for people with type one diabetes six and older.
Arden has been getting her diabetes supplies from US Med for years. You can as well. Usmed.com/juicebox or call (888) 721-1514. Many thanks to US Med for sponsoring this episode and for being and for being longtime sponsors of the juice box podcast. There are links in the show notes and links at juiceboxpodcast.com to US Med, Twist, and today's other awesome sponsor, the Eversense CGM.
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#1969 Elena and Sarah
Elena and Sarah
Elena was diagnosed her senior year of high school and is now managing it on her own in college. She and her mom, Sarah, talk about the handoff — and the nights Elena sleeps through a low.
Jump to a moment
- Thyroid came first, and it changed everything. Before type 1, Elena had stopped growing. Her mom, Sarah, credits catching and treating her thyroid for letting her grow at all. Type 1 followed her senior year of high school, after a week of blurred vision, constant thirst and trips to the bathroom, confirmed at an urgent care.
- She went on the Juice Cruise, then off to college. The family has sailed with the community, and Sarah describes watching Elena share a room down the hall with her sister and simply handle it. Elena talks about the early discomfort of being the kid with diabetes — including going low during an exam — and not yet knowing how to tell people without getting emotional.
- The low she sleeps through is the part that worries everyone. Elena is candid that she sometimes doesn't wake until she's quite low, which was more of a problem in college. Scott tells the story of being sure Arden wouldn't survive her first forty-eight hours at school. Sarah still texts when she sees a high, and describes the balance between watching and letting go.
- A program that makes the cost manageable. Sarah describes coverage that, based on Elena's own income until she's 26, brings the family's cost for all of her diabetes care to roughly $120 a year, plus reimbursement for mileage and overnight stays for appointments. Coverage details vary widely by state and program.
- Her message is that diabetes is a small part of a full life. Elena has won a diabetes scholarship twice, keeps friends who share her approach, and says plainly that it's a little piece of who she is rather than the whole thing. She's also restarting a GLP, and the family is adjusting her settings around it with her care team.
- Juice Cruise 2027 — July 21, 2027 — the community cruise this family has sailed on.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for newly diagnosed families.
Every word of the conversation
Cold open & sponsors0:03
Welcome back, my friends, to the diabetes show that never ends. Remember this, nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any Remember changes to your health care plan or becoming bold with insulin. Just real quick, everybody. Please check out juiceboxboxpodcast.com.
There's a ton of stuff on there that I think you'll enjoy, use, and benefit from. You could also follow me on Instagram or YouTube or TikTok or something like that if that's one of the places you find things. Most of you, I'm gonna admit, are following me at juiceboxpodcast.com type one diabetes on Facebook. It's a private Facebook group. There's also a public Facebook page, juice box podcast.
Would love for you to follow me there if you can, but again, check out juiceboxpodcast.com. Now let's get you into today's episode. Today's podcast is sponsored by US Med and Tandem Diabetes Care. What a pair. I'm a poet and didn't even know it.
This episode of the podcast is sponsored by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem MOBI has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox. You can get your diabetes supplies from the same place that we do, and I'm talking about all your favorites, Dexcom, Libre, Omnipod, Tandem, Ilet, much, much more. Go to usmed.com/juicebox or call (888) 721-1514.
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I'm Elena, and I've had type one diabetes for two years. And right now, I'm in college.
And I'm Sarah. I'm Elena's mom.
Okay. What year in college, Elena?
I'm gonna be a sophomore next year.
Okay. And Sarah, how many kids you got? Is she the only one or there are little leeches everywhere? What's going on?
He is the oldest of three girls.
Oh, good goodness me. Yes. How's your how's your husband? Did he leave years ago? What's going on?
He's handling it.
It's fine. Your dad seem okay, Oleyn?
Oh, yeah. For sure.
Yeah. He does seem okay. It's awesome.
He's great.
What are you going to college for?
I'm studying exercise science and psychology.
Look at you. What what got you interested in that?
Psychology credits, and college2:42
I've taken a couple, like, psychology classes at my community college, and I really enjoyed them. So I went into college, like, mainly, like, wanting to study psychology. But then I got there and I was like, oh, they have this exercise science program that's really cool, and I wanna be an occupational therapist. And so I feel like that, like, more so aligned with that. But then I also was like, I've already taken so many psychology credits.
Like, if I added the second major, like, it wouldn't really
Be a big
that crazy.
So That's awesome. Yeah. And, okay, so are you, do you commute to college, or do you go away? Because it's summer right now.
Yes. No. I go away. It's, like, an hour away from me.
Okay. Was there a, limit, Sarah, on how far she could go?
I think a little bit. We looked a little bit outside of the state, but she didn't have any strong desires to go outside of the state. So we we just looked fairly local in what schools interested her here.
Okay.
Hey. You're It is nice to have her close.
Yeah. I well, but I'm doing the math. Right? She was you were diagnosed, Delaney, in your senior year of high school?
Diagnosed senior year3:54
In my junior year.
In junior year.
Yeah. Towards the end. Utah.
Okay. Are there other folks in the family who have autoimmune issues or type one?
My mom, so Elena's grandma has, Graves' disease. Mhmm. And her mom also had thyroid issues, but that's really it.
Elena, have you developed any thyroid issues?
Yes. I have Hashimoto's thyroiditis.
What a great name, isn't it? Oh, yeah. For sure. Yeah. It
makes me sound super cool when I say it.
I'm sorry. I'm laughing, thinking of my kids. For years, Arden's like, I just have hypothyroidism. I don't have Hashimoto's. We got her tested.
She has Hashimoto's. And she's like, oh, great. Another thing. I was like, well, the other thing was a thing too. So but it it is just a dumb name.
You know, I think it's just named after the person who I think his name was Hashimoto.
Yeah. Probably.
Well, yeah, we'll figure it out later. Not that you care. But, you know, you noticed that Tom Holland didn't, figure it out, Elena. How much would that have been?
Yeah.
Yeah. Right.
I know. That would be pretty cool.
Yeah. Yeah. Hey. What's going on? I have type one diabetes, and I have Hollanditis.
See?
Oh, yeah.
You'd wear that on a T shirt.
Yeah. I like that.
I'm gonna make T shirts that say Hashimoto's thyroid thyroiditis on it, see how many I can sell, see if I can get past three. Oh gosh. So which diagnosis came first?
I was diagnosed with Hashimoto's in seventh grade.
Oh, were you how did they figure it out? Tara, what did you notice?
Oh, she was losing a lot of weight. Looking back at photos now, I can't believe how, like, thin and frail she looked. But we we had, you know, done blood tests and checked things, and no doctor had expressed concern. And I was just talking to a friend who was like, you know what? I would I would enforce that they test for her thyroid.
The thyroid came first5:56
And we did. And I wrote it down here. Her number was 269, I believe, when we got it tested. So, yeah.
Well, did
That was that was
Did your friend think of did your friend think of that because of the grandmother's graves? Or
No. No. I think their son had some autoimmune things, and she was just pushing, like, just go get it checked out. Like, this doesn't seem right.
These these autoimmune people, they know what they're talking about.
They do.
I gotta I have to ask the I'm gonna ask the machine how many people have thyroid problems in America. So I'm starting to think it's everybody. Either that or I've just been making a podcast where I talk to people with autoimmune issues too too much.
Right.
How many people in The US have a thyroid condition diagnosed? And so seventh grade, how old let's think about how old you are in seventh grade. Hold on. In kindergarten, you're five. So then I add six, seven more to that, and I come up with 12.
Were you about 12 when you're diagnosed? Look at me.
Yeah. I was 12.
You're pretty impressed with that, weren't you?
Yeah. That was pretty quick.
Thank you. Yeah. I I suppressed myself. I don't understand compounding interest, though. I know it I know it compounds like, you're I don't understand how it works.
I know it works.
I don't either.
No. Oh, Sarah, let me just tell you something. I'm give you the best piece of pairing advice in the world. Save early, and then you'll have more later.
Absolutely. Okay?
Or early early on save. Like, if you if you give away the first eight years of your fun time, you'll have, like, fifty, sixty years of woo. You just gotta do it in the right order. Okay?
Yes. That that's a huge thing that my husband brought to our family. We have been very good savers and investors early on.
I save like a like, I save like a person who's never gonna spend anything. And I'm starting to wonder if I shouldn't buy something once in a while. I'm like, ugh.
Oh, my family makes fun of me. I'm so frugal.
I'm sure they call you cheap when they're making fun of you. Oh, Elena, fun thing. Look this up later. You take a piece of paper, fold it in half once a day. How many days until it can reach the moon?
That's the thing that's the that's that's the thing that's the thing you wanna look up. If you take a piece of paper you take a piece of paper, you fold it in half once a day.
Okay.
How many days of folding it in half until the paper reaches from the Earth to the moon? That's it.
Yeah. I have to look that up.
I want you to I want you to look it up. Okay? It's gonna Okay. It's gonna freeze your break your mind. And then you're
gonna Okay.
Then you're gonna think, oh, I should save money. Okay. That and if you don't, then I don't I did a bad job of making this point. Also, you're welcome, Sarah. So growing up with the thyroid stuff, once she goes on the meds, does the does weight come my my daughter, probably one of the shortest kids in her school, now one of the tallest girls that she graduated with.
But I really think if we didn't figure out her thyroid soon enough, that wasn't gonna happen because that medicine hit her and she started to grow. I have always disliked ordering diabetes supplies, and I'm guessing you have as well. It hasn't been a problem for us though for the last few years because we began to use US Med back then, and you can too. Usmed.com/juicebox or call (888) 721-1514 to get your free benefits check. US Med has served over 1,000,000 people living with diabetes since 1996.
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Yes. She grew four inches, like, very immediately. Yeah. Yeah. She's she's average height now, but I always makes me wonder, like, if she if, you know, could she have been taller or I don't know how that works.
But
What's average height, Elena? Are you five four?
Yep. Yeah. I'm five four.
Oh my god. I am killing the numbers thing today. I am killing the numbers thing today. This is this is my day. Oh, I can feel it.
Okay. Actually, you know, this is the last time I record till next week because I'm going to something called ADCES in Ohio. So I leave tomorrow to go to a diabetes educators conference that I'll be at for, like, four or five days. I don't usually take
Oh, wow.
Yeah. Yeah. I've I've gone on a lot of trips this year and had a lot of breaks from recording or done a lot of double up days to make up for them more more more so. Yeah. Anyway, diabetes comes junior year of high school.
Yeah.
How did it look to you? Like, did you go to your mom and say something's up, or did you go to her?
A week of symptoms12:16
Well, I, like, mostly went to her, but it went like, my symptoms went on for a week. Like, I just started drinking a ton of water, and I, like I'm not a person who ever drinks water. Like, I don't drink anything.
Mhmm.
So I was like, oh, wow. Something just, like, switched in me, and this is how everyone feels. Like, everyone drinks this much water. Like, everyone goes to the bathroom this much. Like, that's just what happens when you drink that much water.
And then I would, like, walk down the hallways at school, and, like, I could not see anything. Like, I couldn't tell who my friends were, and I was just like, this is really bad. Like, I have twenty twenty vision. Like, something's up. And then we got on a plane to go on vacation, and I just I could not, like, hold like, I had to pee so bad and, like, the seat belt sign was off.
So I was just, like, sitting there, like, crying, like, because I had to pee so bad. And my mom was like, okay. Something is definitely up. And she, like I would say she was familiar ish with, like, the symptoms. Mhmm.
And she has a friend who has her son has type one diabetes.
Okay.
So she was, like, messaging her and, like, trying to, like, figure out what we should do. And so we ended up going to urgent care, and then they just, like, flat out were like, well, you have diabetes. Like, the most, like, in like, insincere, like, way to tell someone such a terrible thing.
Dropped it on you?
And yeah. Yeah. I was like, okay. That's nice.
Your poor mom's still recovering from the shock of having to pay for the Wi Fi on the plane too because her her cheap was like, oh god. I got a message. What's her name? And I gotta pay for the Wi Fi. Gosh.
I I mean, I know it I know it hit her for a minute. She sat there and thought
No. Don't you worry. My mom she was like, we are not paying for Wi Fi. I we definitely did not pay for Wi Fi. We definitely got it replaced somehow.
So we waited we waited till we were on the way in the rental car, and then I was making my phone calls.
Sarah, you have to be impressed that on the short ten minutes we've been talking, I knew that you sat in existential crisis on that plane going, I am not paying for this Wi Fi.
Didn't even cross my mind, honestly.
I would never think of such a thing, Scott. Mine would have been like, oh, I'm not paying $8 for this. Like, she's I mean, if she dies on the plane, what are we gonna the Wi Fi is not gonna help. You you know? Oh my gosh.
Well, that's so they just kinda laid it on you real quick. Hey. You got diabetes. We gotta go?
Yeah. Yeah. Well, my mouth was also, like, super dry, and I couldn't like, I was starving, and so someone gave me, like, a sandwich, and I just couldn't even swallow it because I couldn't get the bread down. And then, like, we made a bad decision about because we went on this vacation, like, with my, like, cousins and my aunt and uncle. Mhmm.
And so I went in a car with all of them, and then, like, I was just, I needed something to eat. So I was eating, like, fruit. We stopped to get ice cream, which probably didn't help my blood sugar.
Jeez.
And then, like, I had to pee so bad. Like, we had to get off the highway and go off, like, the on ramp just so I could, like, get to the bathroom because there's so much traffic. It was, like, a hot mess.
Yeah. Elena, you're never gonna really know the joy because you have sisters and your mom and everybody. The joy of being able to pee wherever you want as a guy is really it's like a high level thing. It really I mean, honestly, it feels it feels like a cheat code.
Yeah.
No kidding. Well, go back for half a second. You don't drink a lot. Is that been your whole life? Because I don't either.
Yeah. No. It's in my whole life. Even my favorite drinks, like, I just I can't bring myself to drink the whole thing. Like, I want, like, a couple sips, and then I'm good.
Like, I don't need to drink anything while I eat.
Oh, Sarah, when you see people drink beer, do you think how do they do that? Like, when they have one after the other, or is that where is that where you draw the line you can drink beer?
You're talking to me? I don't have any issues drinking.
No. I was talking to Elena, but I realized she might not answer in front of you. She's like so so I'll tell it from my perspective, Elena. Like, when I see somebody, like, have a beer and then another beer and another beer, I think I couldn't drink that much if it was water. Like, I just I don't know how to take in that much liquid.
It it freaks me out. And I'll nurse a drink for like, have to force myself to drink. That's how you feel. Okay.
Yeah. Well, no. I'll, like, see people, like, just have, like, drink after drink, and I'm just like like, I don't know how you're doing that. Like, I just, like I can't comprehend how they are able to, like, drink that fast and, like, that much. Like, I just I don't understand it.
Me either. Hey. Do you wanna just for a moment because you got so quiet after I asked about beer, do just wanna say out loud to your mom, you're not drinking at school?
No. She knows I'm not drinking at school.
Okay. Alright.
Just to come just to come to yourself. No. No. I don't.
Because the people are like everyone listening now is like, oh, good job, narc. You you know what I mean? So I just thought I thought I you just paused in a really weird spot, and I was like, oh,
I'm so I wasn't sure if you were talking to me or not. Was confused.
I know. I feel I feel bad because I was like, oh, what did I just do to this poor
Okay. No. You're good.
Okay. So when that news hits, Sarah, you in the room with her at the, what we'll call, unkind urgent care?
“Well, you have diabetes”17:39
Yes. It was the oldest urgent care I've ever seen and the oldest doctor. And, yeah, his his bedside manner was not great. He just walked in. He's like, well, you got diabetes.
And we're like, okay. So you didn't know? I'm like, no.
Where where what state were you just doing an approximation of?
We were in Florida. Okay.
Was his that's how he talked.
Because people won't know before we started recording. Like, I sniffed out your accent, but you got rid of it. Sarah, you don't have it now that we're recording. So when you got when you weren't you were trying to figure out the setup thing, and I guess your mind wandered. I thought you were Canadian, but then you shared you'd lived in Australia for a little bit, which made sense.
And then but once we started recording, it's gone.
Yes. It it it comes and goes, but it's mostly words. You know, will you mind mind my bag or no worries? Those kinds of things.
That's that's where it hits.
Aline But people in Australia thought we were Canadian. They thought our accent was Canadian.
So but it was it was living in Australia mixed with growing up where?
I've we've I've always been in Michigan other than those three years.
Oh, close. Yeah. So you were close to the Canada to begin with.
Yeah.
I see. Okay. Michigan, Canada, same place, really. Right? Yeah.
Basically, how are
the Yeah. They're close.
Yeah. They're close. I don't know. I've okay. So you're a junior in high school.
You're sitting in in an old urgent care in Florida, and some guy who you're pretty sure has a pet alligator tells you that you have type one diabetes. You go to a hospital. You panic. You cry. Like, kinda walk me through the next few minutes.
Yeah. I mean, as soon as I I was already crying, like, when I got to the urgent care because, like, the symptoms are so, like, you have diabetes that I was like, I probably have it. But, like, I had to, like, hear the words, like, to like, know. Like, I was still afraid. I was like, please, like, please have me not have it, but that was not the case.
Yeah.
And then, yeah, I was just, I burst into tears. Like, I was just I kept thinking, like, oh my gosh. My life is over because, like, the son that had diabetes, like, my mom's friend's son Yeah. Like, I just I was friends with her daughter, and her mom would stay up, like, every single night, like, watching his numbers. Like, it just seemed like such a horrible life.
And so that's, like, the only example that I had, and I was like, oh my gosh. Like, I don't even know. Like, I'm just so stressed out. Like, I don't know how I'm gonna live with this condition. Like, I'm scared of needles.
I can't even, like, get a flu shot. Like, I just I don't know how I'm gonna, like, do this. Like, I was like, I'm gonna have to wear devices. Like, I won't be able to wear crop tops anymore. Like, I was like, this is my life is over if I can't wear a crop top.
Like, I don't even know. It's, like, childish things now that I think about it. But, like, I was, like
What? I don't
know how I'm gonna go on. Like, this is crazy.
What good is it being alive if I can't get my belly out once in a while?
Yeah. I I even, like, wear crop tops either, so I don't know why that was what I was just thinking about. I was, like, well, there goes my chance.
I was going to I kept I I promised myself this summer was the time. I can't go on. I can't go on. Well, that's it. It which are you telling me that all that, like, flooded your mind in in in a moment?
Yeah. I was I don't even know how I was thinking about all that, but, like, I was just like, this is crazy. Like, I was so overwhelmed with the diagnosis.
Yeah.
But
Your mom was thinking, oh my god. This sounds expensive.
Absolutely. Gosh.
Sarah, we're kindred spirits. I just want you to know I'm very, very cheap too. I would have gone anger. I I when I something like that happens to me, I don't, like, I don't get sad about it. I get I get mad about it, like, for a a moment.
Then I kinda put my head down and keep going. But Yeah. So off to the hospital, do you keep oh, I'm so interested. Do you keep going on vacation or you go home?
Oh, I was definitely gonna go on vacation. If I get a diabetes diagnosis, I'm not gonna let that stop me from going on a cruise Nice. Even though it's probably a bad idea, but I really wanted to go on that cruise.
Sarah, are you saying, yes, it was a bad idea?
No. So we were at the ER. Thankfully, she had not gone into DKA. Her blood sugar was six fifty nine at diagnosis. And my friend whose son has diabetes was like, you cannot go on that.
We were going on a cruise. She's like, you cannot go on that. And I had friends saying, you cannot do that. And I had the doctor saying, hey. We're we'll give you all the information you need.
If you wanna go, you can go. And I'm like, I'm not gonna take that away from her after we just got this diagnosis.
Like, we
love to travel. We're here to do this. We'll figure it out.
Did it work out okay?
Yeah. Mostly.
Because of ignorance or because of of ninja like execution?
A a little bit of ignorance.
There you go.
Mean, just just not fully knowing what we are walking into. Right. But also we're really determined stubborn people. So we're like, we're gonna do this and we'll figure it out. I think it helped push us into, you know, we we gotta do this now.
Not having a CGM at that moment probably helped. I think if we saw the numbers live, that might have scared us more. But we did have one rough night. They Elena and her sister were sharing a room down the hall from us, and she was handling it. My my alarm did not go off to register her low, and she
Well, your alarm wouldn't have gone off because we didn't have a CGM. Like, it was just me.
Oh, that's right. My alarm did check at 2AM. She was doing the 2AM wake up
to check her blood sugar.
Yeah. Elena, you were right. Somebody's not gonna sleep anymore, but it turned out to be what's her name over here, not you? You sleep through the night like a log, I bet.
Honestly, yeah. Probably.
I listen.
Except for this night. I did wake up this night.
You you're you're a couple years young. What are you, like, 20?
I'm 19.
19. So my daughter's 22, and Mhmm. She just she just restarted her GLP medication the other day, which means we're, like, adjusting her settings back, putting them back where they go with the GLP onboard. And I I said to her last night, I'm like, hey. You know, you're starting to go the wrong way.
A Juice Cruise family24:13
Let's take away insulin, and I just didn't take away enough. And then I found myself at 03:00 in the morning in her room going, hey. Chew on this for a second while I change your sex. And thinking, like, I'm never gonna sleep again probably. Hey.
Where were you were you in you were going, like, on a cruise out of Orlando?
Out of Tampa.
Out of Tampa. Okay. Would you guys mind for just one quick second if we stop talking about your story so I could say, Juice Cruise twenty twenty seven is coming 07/21/2027. It's a five night cruise going out of Orlando Port Canaveral. We'll spend a day at sea before we head to The Dominican Republic, another day at sea before we go to The Bahamas, and then back to Orlando on July 26.
Juiceboxpodcast.com/juicecruise for the third annual juice cruise. Come out. Check it out. Sorry, guys. That was good.
I that way, don't have to set in a an ad later. If you just let me Perfect. Thank you so much.
We'd love to go on a juice cruise sometime.
Oh my gosh. We had such an, I've done two so far. Families, adults, younger kids, older kids, people with type one in their forties, fifties, sixties, seventies. It's such an eclectic group of type ones. We do some you know, like, we do some sit down talks on the days at sea, and, you know, people get to know each other, eat dinner together.
It's really cool. Like, I've done it twice now. I've taken about a 100 listeners, on a cruise, and we're hoping this year to kinda grow it a little bit. So I don't usually push it like this on the podcast, but we would like to see a few more people come. It's a great group, but I think it would be even, like, more impactful if there's more people.
So, anyway, if you wanna come along, Juice Cruise is juiceboxpodcast.com/juicecruise. You can learn more right there. So so you guys are vacationers in general. You're jetting around doing things, cruises, airplanes, and never been a problem with diabetes?
No. No. I mean, we we come armed with all the things, and and I mean, she's definitely gotten stopped in quite a few airports, having to get the the personal check where we have to wait for someone to come and do the pat down and
Mhmm.
To not go through the one X-ray machine. And but for the most part, we manage. It's been it's been good.
Yeah. One time Arden came through that that TSA thing and she looks at me and goes, I'm dating that guy now. And I was like, yeah. I I saw. But, yeah, we don't I you know, it's funny.
I understand when I see people go, like, I don't wanna travel because I don't but in the end, if you have the stuff with you, you're gonna be okay. Like, there's not much difference. Right? You're maybe you're more active and your insulins are different or it's hotter or it's colder or there's elevation. But I think you you know, mostly the stories I hear from people, they figure it out.
Yeah. Yeah.
It's cool. So when you get home from this trip, I'm really super interested about I mean, it's I don't think there's a good time to be diagnosed for sure, but the end of your high school the end of your high school time doesn't sound like a particularly fun time. So I'm wondering how you kinda folded it into your life, especially with the idea, like, so imminent that you're gonna go to college.
Folding it into senior year27:36
Yeah. I mean, at first, I think it was really hard just because, like, it's this new, like, disease. Like, I don't know anything. Like, I got my crash course in the hospital, like, I don't really know, like, how it's gonna, like, affect my life. And so, like, especially because I was just, like, giving myself, like, injections.
Like, I just had to talk to lots of people, like the school nurse. Like, we tried to get a five zero four plan right away and, like, talk to my teachers about accommodations. And, yeah, like, I would go to the, like, nurse's office and give my injections before I would eat or, like, that kind of thing. If I would go low, I would go to the nurse's office. And, yeah, it was just crazy.
And it was like a time where I just, like, wasn't comfortable enough with the disease. Like, I didn't like, I love when people ask me questions about it, but I personally am not like, oh, yeah. I have diabetes. Like, I don't personally like to tell people that I have diabetes. I just want them to figure it out.
But I feel like I don't know. Like, because I would go low in class, and I would, like, take when I was taking, like, tests and stuff. Mhmm. And I just, like I didn't want them to think I was cheating. Like, I didn't wanna, like, look at my phone or my watch.
And so, like, one time, I was taking an exam, and I went, like, really low. And I just I was like, I can't let her know. Like, I don't wanna look at my watch and have her think I'm cheating, but I should check my numbers. And then, like, I went up to her, like, in the middle of the exam, and I just started crying. It was so embarrassing, but then I went to the nurse's office and I was fine.
But it like, I just didn't have, like, the confidence. Like, I don't know. I just didn't really know what to do with it.
Can I ask you a a backward looking question? So Yeah. You're a little older now. You said you didn't you didn't mind if they knew, but you didn't want to tell them. Is that Yes.
Was that because you didn't wanna make it all about you, or you didn't wanna be, like, hey. I'm the kid with diabetes, or do you think maybe in hindsight, you really you didn't have the nerve to tell them? You were just hoping they'd find out so you wouldn't have to tell them.
I feel like a little bit of, like, not wanting it to be about me, but, like, I just, like, like, I'm not like, I'm a more of an introverted person, and I just didn't want, like, the attention to be on me. Like, I don't want, like, the beeps. I don't want people to look at me, like, when my alarms go off. Like, I just don't like the attention of other people. Mhmm.
And, like, I don't know. I just feel like I don't know. Like, I didn't know how to, like, share that I had, like, type one diabetes without, like like, breaking down or, like I don't know. I just, like, wasn't, like, confident with it, I guess, would say.
You weren't sure how that conversation was gonna go?
Yeah. Okay. Yeah.
Did you know any of that, Sarah?
Yeah. A little bit. She definitely wanted to hide it more. Didn't want her you know, where she was wearing her CGM and that. She didn't want it to be a big deal or a big thing that people saw.
I would try to encourage her in that. And now I'd say she's very confident. But, yeah, I knew that a little bit about her.
Does that track for her personality, or did it seem specific to the diabetes, Sarah?
I think that tracks. She's she's Private. She keeps to herself in that way. Yeah.
Other kids, same personality or different?
Oh, they're it's like all all over the place. The the youngest is pretty outgoing. She makes a friend everywhere she goes. Yeah.
Yeah. Interesting, isn't it? How about those other kids? Any things where I mean, are we paying attention now to
other We are paying attention. Our our middle daughter, she's been struggling with migraines for about a year and a half. It's pretty bad. And so we've been we've tested and checked everything, and she's worn a couple of the CGMs just to check her blood sugar. She runs a little bit higher, but nobody seems concerned.
Screening the siblings31:42
So Did you do the thyroid with her?
We've we've checked thyroid. We've checked her a one c. Her a one c is a little bit higher than I think it should be, so I think we need to recheck. It was in December we checked it, and it was 5.4.
Okay.
And her yeah. But her thyroid is numbers are good.
Never said this out loud, but about twenty three million US adults have been diagnosed with thyroid condition at some point. That's nine percent of reports. Nine percent of adults reported ever having thyroid disease applied to the 2020 adult population of two hundred and fifty eight million that equals roughly twenty three million people.
Wow. It's Wow.
Yeah. That's a lot of that's a lot of people that have Tom Holland.
You know what mean? Yeah. Yeah. Yeah.
Let's see if I can get people to start calling it Hollanditis. So have you done, like, trial net or something for your other child?
You know, I've got two boxes sitting in my laundry room. I I got them, and they've they've continued to sit there. I have not I don't know. I'm I'm indifferent about how I wanna proceed with that.
Sarah, you know. Dig a little deeper for me. How come we haven't done it? You don't wanna know the answer?
Partly partly, I know, you know, if if it comes back negative, that doesn't mean they're not gonna get it. So and and we also know the the major signs and symptoms if they were to develop it, and I don't know what all we would do to help delay it. I do wanna know, but I don't wanna know.
You do wanna know, but you don't wanna know. Okay. I hear you. I I've had the same feelings. I think everybody has those feelings.
I was just wondering if you'd put them to words. That's all. Yeah. Because, like you said, if somebody says, oh, it's not gonna happen, you think, well, it's still good. Yeah.
Right? So there's no, like, relief there. So you feel like the only thing that could possibly happen is that someone's gonna tell you she's gonna get diabetes.
Right.
Yeah. Alina, how would that make you feel if one of your siblings had type one?
Honestly, I just I don't know if they would be able to handle it. I feel like it's a lot of, like, being on top of things and, like I don't know. Like, I struggle with managing it and, like, just knowing their personalities. Like, I feel like it would be really, really, really hard for them.
I'm holding in such a laugh because I just feel like she said these these kids are weak. You don't know them, Scott. They're not they're not tough like me. They'll have they'll have real trouble. How much younger are you, or how much younger are they than you?
One's two years younger, and then the other one's five years younger than me.
Do you think that they're gonna be upset when they hear that you don't think they could handle it?
No. I don't think they'll be upset. I don't think that they'll
be fine. They've they've it's been said many times. It's no wonder Elena was the one. She's still responsible.
How does that make you feel when someone says that?
It makes me feel good that, like, people, like, think that, like like, that I'm doing good managing it or, like, just that they just think that I'm responsible. It just makes me feel good about myself.
Alright. Very nice. I I I have to tell you, like, I have such a different feeling when I hear that. I Really? Yeah.
I hear I well, it depends, I guess, on the on the perspective. Right? But I usually hear from people who are a little more religious minded, and they say, well, if someone was gonna get it, it's great that your daughter did because you can handle it, which makes it feel like, oh, I'm a competent person, so my kid got diabetes. What a what an odd statement. Yeah.
But I I take your point though. Like, people are like, oh, she can do it. Like so when they think of you, they go, oh, competent person. That's awesome. Yeah.
Yeah. I I could see both sides of it. That's cool. But these these sisters of yours, they're just a chit show is what you're telling me. Right?
Oh, it is I'm not gonna say that out loud. I'll just let my mom laugh and we'll move on.
They each have their their good and bad qualities.
I bet you they'd be fine. I bet I I really do
they'd be fine.
Yeah. Yeah. Yeah. I think that I think that the way people deal with things is certainly different. But I do believe I do believe that most people figure out a way to deal with things if they have Yeah.
Like, a solid background and good tools and support. I think anybody's, you know, makeup can handle something like this. But I do think
For sure.
I do think there are people who are predisposed to if they're not supported to maybe tumble faster. And and that but that wouldn't happen in your family. You would not support them. So yeah. You know what I mean?
You'll be good.
Yeah.
What did you come on this podcast for, Sarah? Let me find out. I'll take a look unless you remember. Like, what made you wanna do this?
You know, the travel aspect. Just kind of our diagnosis story was a little bit different and, you know, just kind of promoting travel. Like, don't be afraid to go out and and try things. Like, you know, I I don't want it to you know, diabetes to stop people from living, like, a a great exciting life. That was one aspect.
Paying for all of it37:02
Another, you know, the cheap version in me was, like, how are we gonna pay for all of this? And we Elena is on a a children's special health care services medicate insurance. K. And that has been extremely helpful. Once she turned 18 and graduated high school, it was based off of her income, which is not a whole lot.
And so until she's 26, we pay a $120 for a year for all of her diabetes care. So that's endocrinology. That's all of her medications, her devices, everything.
Is this a Michigan thing?
It is. I don't know if it's elsewhere. And I've you know, the people that I know that have kids with diabetes, I'm like, you've gotta check this out. Like, this is, at least for these next several years, when life is extra expensive for us, that's a a wonderful
Tell me go go through
you know, gas mileage to appointments, hotel visits if you have to stay somewhere overnight.
Oh, okay. Start over again. Where do I find out about this? Like, is this a, like, a government website, or where do I go?
So it's it's the acronym so, Children's Special Healthcare Services.
Mhmm.
And it's in Michigan. It's it's a similar thing to Medicaid, but it's not Medicaid. I guess that's all I really know.
And you just went you just went on a website and you're like, that sounds like a thing and clicked around a little bit. And now what does she get out of it? Goes walk me through what what it does for her. Where did where are the benefits at again?
I think we learned about it at the endocrinologist.
Okay.
They just they they mentioned it, and so I looked into it. So, yeah, just the you know, it's based off of now that she's 18 and and graduated, so it's based off of her income until she's 26. Mhmm. And, yeah, it covers all of her medical care, anything related to diabetes.
Even though she's still on your insurance?
Yes. It it it goes under our insurance first, and then what our insurance doesn't cover is
You submit to them. I'll be
And we have a, you know, we have a representative that she's amazing. She comes and helps us fill out the forms. We have to fill out forms yearly. I have to send her anytime we've traveled, I send her usually at the end of each month. I sent her this was our travel, and then they send it on, and we get, you know Send those out from Lansing.
Send a little money back.
It's it yes. It's a lot of work, but it's definitely worth it.
Children's special health care services. Yep. That's worth a Google. It's a lot of work. Oh, they they they don't make it easy to get that money back, you're saying?
It's just a lot of work to stay on top of it. Again, you know, constantly, you know, every month I'm I'm messaging, giving information. We have to fill out many forms, send things, you know, in the mail. So it's staying on top of it.
But Is it does it feel worth it? Or at the end, do you go, can't believe I just did that for $23? How does it
It's absolutely worth it.
I mean,
there are some months where I don't send the gas bill, and I'm like, oh, shoot. I forgot about that. I have a spreadsheet. I keep I keep track of everything.
Oh, Elena, is your mom what they call a control freak? You can say it in front of her. Go ahead.
I mean, she definitely likes, like, everything to be, like, a certain way. Like, I feel like she's, like, maybe, like, 80% control freak.
Oh, she said she goes
I I know I'm a control freak.
She goes, I I mean, I gotta live I gotta live here still, but what? Am I compelled to answer? Is this, court? Sarah, are you anxious?
I can be anxious, but I think life has chilled me out a little bit.
Life has chilled. Do you mean beating you up?
I think, honestly, things like, you know, type one diagnosis, things that have happened in life have made me realize little things aren't as big of a deal.
K. Scott, I stopped fighting in 2006. That's that's the day I went. Whatever happens is fine with me. Yeah.
That I I was just wondering if there was anxiety because you see it a lot with tight with autoimmune. But, Elena, do you have any anxiety?
Same. Same. Would I feel like in high school, I had more anxiety, but now I feel like I don't know. Like, I have, like, very minimum anxiety.
Okay. Cool. How's dad?
Oh, dad's chill.
He is? So chill. He's super chill.
Yeah. Is that why you picked him, Sarah?
Like, you know, opposites attract. Yeah.
Like, this guy looks like the house is on fire. He's not even getting up. This this this he's like, it'll It's like so It'll probably go out on its own. You know? Is this a problem?
I'll never forget when my my son was born. He I don't know how if you know how it works, Elena, so I don't wanna be too graphic. But he appeared in the world, and there's a there's a tube that connects you to your mom. You know about this stuff, Elena. Right?
And I know. Yeah. Right. And so, like, oxygen goes through it and blood and food. My son comes out.
There's a knot in his. And I point to the knot and I say to the doctor, is that a problem? And he holds him up in front of me indicating to me that he's alive and goes, apparently not. And I thought I thought there's a relaxed guy. Was like
Speaking of birth stories, I have to share this to to share Please. How chill my husband is. I as I was laboring with Elena, I was in the tub, and he was sitting in the bathroom. This is at the hospital, and there's a fan blowing on me because I'm hot and cold and all the things. And he's eating beef jerky, and that smell is blowing into my face.
And he's like, what? They said I needed
to eat, like, maintain, like, energy throughout.
But my wife says that I bent over and asked her if she was okay, and I smelled like Doritos. And I still I still feel bad about that. Twenty six years later, she will still tell you about it if it comes up, by the way. Yep. Yeah.
Like, I I I when she's mean to me, Sarah, I say, like, all I've done is dedicate my whole life to you. Are you mad about that? And let the Doritos story go now. It's enough. Everyone's heard it.
We're all good.
Well, you hadn't heard this story, and I hadn't heard yours.
Oh, no. No. I know. But later, if I bring this up, I tell if I tell her your husband's beef jerky story, she will not even pause before she goes, well, I remember. And I'd be like, know.
It's okay. Sarah, when this feeling that you've tried to give to your kids of, like, we can just go do anything, is it working? Do you think, like, she's adopted it?
Oh, yes. Definitely. This she is doing so many things at college, things that we did not push on her. I think her first year of school, she had three little mini on campus jobs. She's in a sorority.
She's on the dance team, the cheer team. She is a go getter in every sense of the words.
Wow. Alana, do you feel, like, encumbered at all? Like, do you ever have a moment where you think, oh, I can't do that because of this, or do you have you incorporated it well?
I think I've incorporated it well. There are, like, very, very few moments where I'm like, oh, like, I can't do that. It's it like, it's so rare for me to think that.
How do you navigate the sleeping bit about diabetes? Like, what's yours do you have a setup? Do you have, like, a plan in place? Elena, can you tell me if it if it's comfortable or if it's just it's working, but you're you wish it was different?
Yeah. I mean, when I, like, sleep, like, if my like, I just have my like, the Dexcom app on my phone. Like, I just make sure that's on. And then, like, sometimes, like, I'll wake up and I hear it. Sometimes I wake up and hear it, and I'm just like, no.
I'm sure it's fake and go back to sleep. Sometimes, like, I don't wake up until I'm so low that I, like, feel it. That isn't really like, that's usually now what happens. Mhmm. But most of the time when I wake up, I'll, like, treat and I'll text my mom that I've treated, especially when I'm at college that she knows that, like like, I am awake and treating.
Sleeping through lows at college45:47
And then I'll usually just, like, stay up until I'm, like, my number's good again.
Okay.
And then I'll go back to bed. But I don't know. It's been better recently, but there definitely are sometimes, like especially, like, in college, like, where I wouldn't wake up. But those times, like, my roommate would hear my alarm. She'd be like, Elena, wake up.
Like, you gotta get up. You got a tree. I was like, oh, okay.
Do you think what she means is Elena, please stop that alarm from beeping? And Honestly,
yeah. Like, don't know how she lives with me because my alarm's, like yeah. She's she's awesome.
That's cool. Arden said like, I've told this a million times, but the day we dropped Arden off at college, I was like, she'll be dead in forty eight hours. Like, she's she's never woken up once for a low in her whole life. And then as she said, she doesn't know how to describe it, but as soon as she got to college and she knew it was on her, she just wakes up for it. And yeah.
And then when she comes home, she says there's this feeling that comes over, like, oh, somebody will help me. And she's like, then I don't hear it anymore. I don't know if
that Really?
Yeah. Are you, like
That's interesting.
Yeah. So that's why I was in her room last night because she's she didn't know. But but and I would say that in college, half a dozen times in three years when she was away, like, I I I I would call her and be like, hey. Are you alright? I think there was once in the beginning I had to wake her up.
But she she she she took to it pretty quickly. Is it scary?
I personally don't think so. My mom very much thinks that it's scary, but I don't know. I'm, like, really tired at that point. So I'm just like, it's like, I'm fine. I just gotta do this so I can go back to bed.
Sarah, is it scary?
It's challenging. Right? If they're low, they're not thinking clearly. And there are times where she's like, I'm fine. And she, like, won't tell me her number.
I'm like, just I need like, it might be fine for you, but I can't sleep at night. Like, I'm if something happens to you, that's to me, now it's on me. Like, I'm here to protect you. And so we we have it's few and far between, but we have a couple of those nights. Yeah.
So those moments are scary. It was scary initially when she went away to school, just that unknown and how are we gonna communicate and Yeah.
Yeah. Elaine Elena
She has such a good handle.
Is it hard to hear that your mom is, like, worried for you? And is it hard to care when you feel like you're okay? Like, does it feel burdensome to you, or does it feel important that she doesn't feel that way? I'm dying to know how that makes you feel.
I mean, obviously, I don't want her to, like, be worried about me, which, like, nothing I do is gonna make her not worry, which is, like, hard. Like like, it, like, annoys me, like, how, like, worried she is about it. And, like like, when she tells me, like, she doesn't sleep at night, and I'm like, okay. Well, turn your alarms off, like but I know, like, she's not going to do that. It's like I don't know.
Like, I I definitely don't, like, want to worry her, but, like Are you don't know. You able to control sometimes.
No. No. Are you able to put yourself in her shoes or no?
I am. Like, I do understand, like, it's important that she, like, wakes up. But, like, also, like, sometimes she doesn't wake up in, like I don't know.
Hold on.
Like, I feel like
it's Do you have a pet?
Mostly just on me.
Elena, do you have a pet? No. You don't don't have a dog or a cat or anything you love that's alive that isn't your mom or your dad?
Oh, I mean, my sisters. No.
There's you don't let these kids have pets, Sarah? You are a cheap son of a bitch. How about that?
Oh, no. I would love to have. We used to have cats. My husband's allergic.
And he Ruining everything. Okay.
I know.
Well, he
he he he you know, we had two cats for a while, and he got shots until he was used to the cats.
So Oh, what a good
to Australia. We had to get rid of the cats, and then, we came back and just didn't get pets. We had a we had a hamster. We had two hamsters and a fish.
You lived in Australia. You didn't you didn't you didn't have a snake or a a bearded dragon or something like that?
No. Well, we did have a blue tongued lizard living outside of our house.
Oh, you had a blue tongued skin?
Babies.
Oh, they're beautiful. They're very weird bodied animals, but they're very cool.
Yes.
Yeah. I know a guy who would tell you that they're the best pet reptile, a blue tongued skin, because you yeah. Because they're easy to feed. This is not the point. The point is this.
Elena, I'm gonna say something to you that your mom is very likely thinking, and it's the worst thing to say to somebody in the whole world. But wait till you have a kid. And someone
I know.
Yeah. And someone
She tells me that all the time.
Well, she shouldn't. That's I think a a therapist would tell her that's wrong, but that's fine. That's why I was trying to do it for you, Sarah. But but wait till like, imagine this. Okay?
Try to imagine a thing that you love that is alive, and you can't get another one. It's not a puppy. Right? And I call you on the phone at 03:30 in the morning, and I go, hey. The puppy's dying.
And then I hang up the phone, and then you try to call me back, and I won't answer. How do you feel?
Yeah. Yeah. I mean, I understand that.
Do you? Yeah. Not until you have a baby,
you won't.
It's the weird I I know people think that's a bad thing to say to other people because some people can't have kids, and it's about I I hear you. Yeah. I hear you on with your online feelings. But but I'm telling you that once something I don't know how to describe it, honestly. I could probably spend the rest of my life trying to describe what happened to me the minute that that guy looked at me and was like, hey.
Here's your son. He's okay. Like and now I'm like, okay. Well, now I'll just spend the rest of my life making sure he's okay, I guess. And it doesn't shut off.
It doesn't go away. Nobody could talk you out of it. And and then suddenly, somebody would put him somewhere privately and tell me he's not okay, but you're not allowed to know if he's okay or try to help. But interestingly enough, if we let you help, you would be able to help, but we're not gonna let you. Hopefully, he won't die.
Why don't you go back to sleep? Right?
Yeah.
Okay. Yeah. So so let me tell you the thing I tell my daughter that she ignores me about. I know or k, not a great text response back. How about drank something, ate something, I'm taking care of it, I took care of it.
What she can do herself52:19
Like, something a little more direct. Right, Sarah? Is that all you're looking for?
Yeah. I I I send very short little things like insulin, question mark, or b I say BS. They're like, what's your blood sugar?
And, Alina, you're thinking, oh, this broad won't leave me alone. Right? K. This she she is just she she doesn't believe that I can take care of myself. Have you ever thought that one?
No. She knows that, like, I can take care
of myself. But have you ever felt like she thinks you can't because she's checking on you?
No. I haven't really
felt like that. Sarah, you've raised a very, very healthy child. Good for you. Good job.
She I know that she can, but I also want her to take as good of care of herself as she can. And and, you know, everyone needs a little help sometimes.
Try to imagine your poor mother, Elena, living the rest of her life. You're gone. You've slipped away in the night, and she feels like it's her fault. Ugh. The trouble you put on her.
Look at this.
Oh my god.
I've just teased you. You're fine. But everybody's gonna be alright. The CGMs and the monitors and the the fast acting glucagon and all that that that that they put you with a kid who seems like they're in charge of you, like, you know, the the roommate, you'll be okay. And you don't Yeah.
And you seriously don't drink? If you did, would you tell your mom? Such a long pause.
No. I probably would. I probably would tell her, but I don't know. I just I just don't do it. I just I don't know.
I don't. My mom's let me, like, try to like, try a couple things, like, on vacation, like Mhmm. When, like, I'm legally allowed to drink, but, like, I don't know. Just doesn't taste good. Like, I just I don't know.
Sara, do
you And, like, I don't even like drinking anyway, so I feel like
That's what they always say before they start drinking. Sarah, do you and your husband drink at all?
Oh gosh. I'm I'm sorry. Say that again?
Do you or your husband drink?
Yeah. Yeah. We drink.
Do you expect that she's going to at some point?
I don't know if she will. Just I think she's very she might. I think she will, like, later in life, like, you know, have some wine or have whatever. But she I think she knows some of the risks with it, and I think she she just, yeah, has resolved that she's not really.
Okay. Alright. So awesome. Sarah, one more question. Can I be very because it's the world we live in?
How about how about the weed? Do you think there's the weed happening, Sarah? Do you the No. No? No.
Definitely not?
Definitely not.
Okay. Just sitting in silence a little longer. We'll see.
Making a really good example for her sisters.
Good for you. Good too. Do you feel pressure to be examples for those kids because they're such train wrecks?
I mean, I don't really feel pressure. I just, like, personally, like, for myself, I wanna, like, like, be good for myself.
So then tell me a serious thing. When you get to college and people are drinking and they're smoking and they're doing all kinds of crazy stuff that you don't wanna do, is it hard to especially if you're in a sorority, is it hard to stay separated from that? How do you accomplish that?
I mean, I feel like it's not as hard. Like, we all have, like, cups for, like, you can't tell what's inside. So, like, if I'm drinking water, like, no one knows that I'm drinking water and everyone else is, like, drinking. Mhmm. So, like, I feel like it's, like, easier that way.
I mean, it is hard sometimes, like, when everyone else is doing it, but I don't know. Like, I just personally I don't know. I just don't really wanna do that. It's like, I feel like I like like because I have some friends that are very similar to me in that aspect, and so, like, it's just, like, important to, like, hang out with them during those situations.
Just kinda the people you surround yourself with.
Yeah. For sure.
It's a good it's a good way to to approach it. Your note says something about management mentorship giving back. What does that mean?
So after I got diagnosed, I met with the school nurse, and then she connected me to this other lady who runs a nonprofit called My Life in Numbers. And so, basically, I connected with her, and then I became, an advocate for the program. And I mentored this middle schooler who also had type one diabetes. And so we'd get together, like, every month and hang out and do something fun and just, like, talk about, like, life with diabetes. Like, just having someone who, like, kind of understands more just to talk about stuff that, like, your parents or your siblings or your friends might not understand as well.
A scholarship, twice57:03
It's nice. How often do you do that? How does that work? Is it, like, online or do you meet in person?
Well, I only did it when I was in high school just because, like, we lived in the same area.
Oh, I see.
So I'm not her mentor anymore now that I'm in college. But I have, like they also have a scholarship. And so I've applied to the scholarship, and I've won the scholarship twice.
Mhmm.
And so I've also, like I've spoke at some of their fundraising events that they do and that kind of thing.
Is Diabetes Link at your school, the, the College Diabetes Network? Isn't that what it's called, though?
No. It's not. No. My college is very small.
These people. Don't they know you're there and you're trying to be inclusive? Would you is that a thing you would do you know any other type ones at college?
Yeah. I know a couple other ones.
You guys could start a club. That'd be a nice thing to put on your on your res. You know what I mean?
Yeah. Maybe.
Yeah. You could be the founder of the chapter of blah blah blah, and then Yeah. Yeah. That's a good way to get a job later. Your mom's
We tried doing that in high school. We tried to start a club. Yeah. Was a lot of lot of hoops to jump through. Doesn't quite work out.
Yeah. Well, Diabetes Link's a good place to look. It's the diabeteslink.org.
Okay. I'll write that down.
Well, you don't have to let me ever listen. That's nice of you to write it down. Look how, like, how look how earnest she is, Sarah. You must be so proud.
Writing it down as well.
Oh my god. Sarah, is she is she a control freak?
Yeah. A little bit.
You're supposed to go, I mean.
I I we're very similar, I think
You two are.
In that. Yeah.
Oh, so when you're talking about those other two, they just take after your husband, and you guys don't understand them because they're so free in their minds. Right?
A little bit of that.
Mhmm. Yeah. Yeah. It's interesting. Isn't life interesting?
How old are you, Sarah?
I am 46.
46. Okay. And, Elena, are you a person who thinks about, like, I wanna be married. I wanna have kids, or do you think more like I wanna start a career? Like, how how do you foresee the next number of years of your life going?
I mean, ideally, both.
Yeah.
Like, I wanna have, like, a family, but I also wanna have a career.
Okay. Not me. Yeah. I would just like to I'd like it if everybody left me alone and there was some money somewhere I could use. I think that would be I mean, that'd really be the best plan.
I've I've had enough of everybody now. We're we're good. You you know what I mean? Like, it's like so you'd like to work a little, build a little life for yourself, meet a guy meet a guy? Girl, what are we trying to meet?
Yeah. Yeah. Yeah. A guy. Okay.
And, is that is that a thing you you see like, I don't know how, like, the thing you're doing works. Like, you have a couple more years to go. Do you have grad school? Do you have to do it as well?
Yep. Yeah. I'll have to go to grad school. Yeah.
Okay. And then after that, off into the working world, what, like, 25 years old ish?
Probably around there. Yeah.
Okay. Alright. Where are we gonna meet this boy?
That is a good question.
Well, Ryan
I don't know.
Yeah. It's hard. Like, I mean, I know people say it's hard. It's always been hard to meet people, but it does feel, like, particularly difficult at the moment.
Yeah.
Yeah. And and and it's a small school, so you've now you've you've run your eyes over every one of them. You haven't the boy's not I I already hear in your voice the guy's not at that school. Right?
I mean, not that I know of.
Yeah. Yeah. You looked around. He's not there. I got it.
Okay. So you got you gotta come home, get out into the world. Sarah, how'd you meet your husband?
We met our first weekend of college.
Oh, were you there for an MRS degree, or, did it just work out
that way?
I was not. I actually had a a boyfriend at the time.
Sarah. Dirty.
Dirty. Not there was nothing bad. We broke it off, and then we started dating. But, yes, we I met him when I was 18.
Elaine Elaine, do you know what it means when someone says, are you there to get an MRS degree?
Yes.
Okay. Do you know some girls doing that?
I mean, not really. Okay. Is it I mean, I think it's in the back of everyone's mind, but, like, no one's, like, upfront, oh, I'm only here for this reason.
I hear you. Is it is it startling for you to hear that your father broke up a loving high school relationship?
No. Not really.
Do you do you do you imagine he just swooped in on your mom and she was just, like, defenseless, or do you think she wouldn't got there?
Definitely not. No? It's definitely probably all my mom.
Sarah, is this true?
Yeah. I mean, you know, you go away to college, there's a lot of other people there, so that relationship just did not last. But we're still friends. We're still friends. We went to each other's weddings.
Oh my We
camped together.
Did you really? Yeah. That sounds that sounds horrible.
Actually, we're we're in a good place.
Sounds absolutely horrible. How long did you date that guy for that you went to his wedding?
I dated him my freshman year of high school for a few months and then again for probably about a year, my senior year.
Sarah, is that is that guilt that kept you friends, or did would you genuinely I really wanna know about
this. Were in the same friend group in high school, so I think some of that came back around after after a little while.
You're trying to say you couldn't get away?
He's a nice guy.
Is it oh, oh, ain't it isn't it fun picking your mom's life apart? Isn't this great? Is it make you uncomfortable, or are you enjoying it the way I am?
I mean, slightly uncomfortable, but it's fine.
He'll never he'll never hear this. No. No. Trust me. If he was like
one of his kids gets diabetes and he starts listening.
Wouldn't that be insane? Wouldn't that absolutely be insane if this lady's like, oh, my kid got type one. It's so scary. But, like, this lady online told me about this thing, and I was listening. And I realized that my husband's girlfriend from high school only came to our wedding because she felt trapped into it.
And then we went to hers, which, by the way, we did not wanna do.
Oh my god.
I love this. This is my most fun I'm gonna have today. I know it's uncomfortable for you, but I really appreciate you helping me to have a nice day. Oh my god. Is there anything, Elena, that we have not spoken about?
Anything you wanna share about diabetes with people?
I mean, I would just say, like, be grateful for what you have and, like, find people who can support you and, like like, help you live with diabetes and not just, like, bring you down every time your sensor beeps. And, yeah, just don't let diabetes stop you from doing anything you wanna do.
Have you run into people that are a bummer?
Yeah. In high school, my alarm would go off and people would be like, turn that off. Like, be quiet. Like, I'm trying to do stuff. Like, that's so annoying.
Like and I just don't get why someone wanna be like that. But Yeah. Just find people who aren't like that.
I don't just think there's all those weddings you don't have to go to one day. Saving you all saving you all kinds of money. Every time one of them talks, go, not coming to your wedding. That's it. Yeah.
Saving me all kinds of money, dude. Shitty over here about my CGM. Thank you. Oh my gosh. Alina, do you curse?
You strike me as a person who doesn't curse.
No. I do not.
I could really tell. How did you do this, Sarah? What'd you do to that poor girl? Why is she so nice?
I I don't you know, her parents are pretty nice.
Is this a religion? Wait. Wait. I'm being serious. Is this, like, a religion thing?
We we are Christians.
Okay. Okay.
So, yeah, Elena's grown up in the church. She's at actually a Christian college.
I got it. I got the whole okay. Alright. I just wanted to be sure because, like, I yeah. She couldn't even answer the question about weed.
She just got very quiet. She's like, I can't I can't say no to that. Jesus could misunderstand. And so I was I was like, I was trying to figure out what was happening. Listen.
I should have done this. You seem like a really nice kid.
Thank you.
Yeah. You're welcome. Do you do you know that about yourself? Like, is that a thing you're aware of that you you come off as, a kind genuinely kind reserve, but nicely reserved person?
Yeah. I would definitely say so. I think that, like, lots of people, like, realize, like, very soon after they meet me, like, like, my coworkers and stuff. Like, even though I don't, like, talk to them, like, all that much, like, they all just, like, know my personality, like, without, like, really knowing my personality personality. Like, I feel like it's very, like, clear.
Like, not necessarily, like, my intentions, but, like, that, like, I am, like, a nice person.
You're you're you're earnest, and you you come you come off really genuinely. It's a Thank you. They they always you're welcome. It's a I it's meant as it's meant as a compliment. I don't know how, like, what what scare tactics your mom had to use, but I really think it's working out.
I mean, it must be shocking to hear these such a, like, an anti Christian thing your mom did, like, like, just leaving that boy like that. I I know this was at the fir Sarah, this was the first day at the mixer, wasn't it? You found this like, when did you pick this husband up at the college?
First You know, I went to college with one of my good friends from high school, and we were trying to meet people. And I felt like I couldn't get an edge in. You know what? You know, I wanted to make my own friends, so I just walked down a hall and walked into his room and met him and his best friend. And
No kidding. Do you do that?
And that's not my normal personality. No. I'm not very outgoing.
But What what made you do it that day, do you think?
I was mad. I was like, I'm not gonna sit here and play second fiddle. I'm gonna go make my own friend.
Oh, it was at this situation. You were like, this bitch gonna try to take over for me at college. I gotta get out of here right now. Right? Yeah.
Yeah. You didn't think those words, but that's what the the idea is there. Yeah. Yeah. Okay.
Oh, you had to get away. Oh, so she was trying to make you second fiddle?
A little bit. Oh, I hear what you're new experience for both of us. So
Did you go to her wedding?
Yes.
God. But you didn't want to. Right?
No. We were we're still good friends.
Okay. Alright. Alright. Alright. I love this.
Oh my god. I I don't know why I act like I wouldn't still be watching soap operas if they were on TV. I just really would love them. Well, I think you guys are terrific. I really do appreciate you doing this.
Have the have I made this uncomfortable for you in any way, did you have a good time?
No. This is great. I you know, I go to your podcast all the time, and so it's a little bit weird talking to you instead of just listening to you.
But
Listen. We have a minute. If there's gonna be a moment where you're gonna say a lot of nice stuff about me, here's where you could do it for sure.
Oh, absolutely. Yeah. I I wish Elena would listen more. That's one thing. I've tried to get her.
I'm like, oh, this one was really great. Listen to this one or do this. But I listen when I'm out running. So I I pop one in, and sometimes I'm crying during my run. Sometimes I'm laughing.
Yeah. I just I learn a lot. I feel like I try to share a little bit of what I learn with people. And
What she'd tell someone else1:08:38
Thank you.
It's just interesting hearing people's stories.
That's great to
know that. I'm amazed. Like, I'm so thankful that you do this because that's that's how I, you know, first started learning things. Oh. And
Elena, what's it like to hear that uncle Scott has had such a big impression on your health and wellness? It's you probably feel like you wanna thank me, but you don't have to. Don't feel that kind of pressure. Okay? What is your a one C?
How are you where do you keep it?
Mom, do you know my a one C?
That that was longer than the drinking, but go ahead.
Her her last one was 5.9, and it's been in the low sixes or high fives for the last year.
And, Elena, when you're away at school, you're managing completely by yourself?
Yeah. For the most part. I mean, like, my mom will still text me, like, if I'm high, like, oh, take insulin. If I'm low, are you treating? Yeah.
But, like, yeah, for the most part, it's mostly just me.
Oh, wow. Sarah, and you were able to, like, impart all this on her in a couple of years?
Well, I mean, it's tricky. Right? At that age of diagnosis, she's already, you know, very independent in a lot of ways. And so she understands, you know, the ins and outs of her devices and all of that more than I I don't fully understand all of that. But, you know, I'm continually trying to suggest pre bolusing and tightening her range and, like, hey.
If we did this, this would be better later on. So I know that stuff, but she she has all the controls, and she she knows what she's doing. And she's doing a great job. Just, you know, those little things could be better.
Yeah. Elena, how how how are you so good at this? Like, does it just make sense to you? Or by the way, are you honeymooning by any chance?
No. I'm not. Okay. I feel like I never really had much of a honeymoon, like, stage. But
But you have the same impacts. Like, like, you would say, like, your insulin needs differ throughout the month. Right? They they they increase and decrease with your with your Mhmm. With your period.
So, like, so you you have that pressure. You have Hashimoto's on top of all this. Yeah. And and you're you've got an a one c in the fives, but it seems so like, yeah, that's just what happens. Like, that that you didn't know where your a one c was was kind of fascinating because I thought, oh, it's gonna be higher, but it's not.
Like, is this I don't wanna I'm not gonna say easy, but is this just did this just come to you, or did your mom tell you something that clicked? Like, how did you get to this point?
I mean, I think it's just mostly my personality personality. Like, I wanna, like like, obviously, like, I don't really have a choice. Like, I have to take insulin, like, if I wanna eat something. Like so it's like, am I gonna wanna, like like it's mostly just, like, the feelings for me. Like, when I go low, like, I just I feel so terrible.
Like, I hate going low. But, like, when I go high, like like, I don't really notice when I'm high. So, like, I prefer being high, which isn't good. But, like, if I had to pick high or low, like, I'd rather be high. Yeah.
But, like, for the most part, I feel like I don't know. Like, I feel like I'm just, like, a positive person. And so, like, I'm just like, well, like, I have to do this. Like, I have to live with this disease. Like like, why?
Like, complain about it when it's not like anything can change.
Yeah. And is that, like, a genuine feeling for you, or are you, like, forcing yourself to feel that way?
No. I would say it's a genuine feeling. I feel like there's so many, like, other parts of my life that I really enjoy, like, things that I love doing, like, people I love being with that like, the diabetes is just, like, a little tiny, like, side thing. And, like, I don't know. Like, this is probably gonna sound bad, but, like, I feel like my life is so good.
Like, diabetes isn't really bringing it down much.
Oh, Sarah. Forget this, like, physical therapy thing. Let's just bottle her attitude and sell that.
I know.
Yeah. Holy heck. Yeah. Fantastic. Oh my god.
I gotta be honest with you. I I swear to god, I'm gonna try to trade you for my kids. I I don't know if, like, I the baseball, like, trade deadline just went past, and I watched human beings just be given back and forth. You must be able to do this with children. Sarah, I'm coming for your kid.
I'm gonna make a solid offer to the general manager. Arden, I'm sorry. You gotta go live with Sarah now. Like
Yeah. I know. I know. You know, we've never had an issue with Elena taking that little pill in the morning. I know that's been some struggles with Arden in the
past. Struggle. So
Yeah. That's a word. Okay. So what oh, oh, Sarah. God bless you.
I you you've done something right. I've made a mistake not living a more religious lifestyle. I just realized it just now. It's too late for me now. But No.
You know, I need help going forward. So
Oh, she's gonna fight you at some point. Like, you know it's coming. Right? Like, there's gotta be a pushback.
Little moments, but
for the
most part, it's yeah.
I don't know. She see Elena, you seem pretty cool. Just keep doing what you're doing. Okay?
Okay. Alright.
And don't listen. And don't just not not the first guy. You know what I mean? Like, really make sure because boys are and you wanna pick the best one. Yeah.
Yeah. Yeah. No matter what.
She's a pretty big list going.
Of of of do's and don'ts?
Yeah. I think she's looking for.
Oh, let's let's let's let's end on this, Elena. Give me your like, what are your red give me a couple of red flags. Give me a couple must haves.
I mean, I feel like I'm not, like, necessarily, like, focusing on, like, the red flags as much. Like, I'm mostly just focusing on what I want. But, like, I guess, just, like like, I want like, I don't want someone who's, like, mean, like and, like, I want someone who, like, can, like I don't know. Like, just be like, I want someone who can, like, be helpful without me having to be, like, oh, can you do this? Like, I just want them to know and be, oh, let me just do this for you because that's nice, like, without having, like, me having to ask.
You're looking for a kind hold on. A kind self starter who doesn't have to be told how to be decent.
Yeah. Yeah.
Well, then you're not looking for a boy you're not looking for a boy, but keep going.
Yeah. I think that's my problem.
Yeah. Hold on. Trust me. It definitely is your problem. But okay.
What was the next thing?
Like, I want, like, a hard worker or, like, someone who's, like, determined and, like I don't know. Like, who, like, is working towards something in life.
Does this describe your father?
For the most. I mean, like, half of it, I would say.
Okay.
Like, he's, like, half way there.
Okay. He's got well, don't worry. Your mom's not done with him yet. He he he's come he's a slow project, but she's gonna get him there. So but and what about, like I know you said you're not focused on red flags, but what would some be?
I don't even know. I just, like, haven't really thought about that.
Hey, Sarah.
I don't know.
Do you think do you think do you think you know her red flags? Something she wouldn't she'd be a hard no for?
Somebody that was, a big partier that's not her her jam. Yeah. I think she's gonna look for someone most likely that is Christian and you know?
Mhmm. Okay.
Alright. I I think yeah.
Alright. My last question here, Elena, is what's on your playlist right now? What are you listening to?
Oh, gosh. My playlist is, like, the most, like, random thing ever because I don't like I don't really like any, like, specific artists. I just like random songs from random artists.
Yeah.
Like, I like a lot of right now, like, my favorite song that I've been playing is it's a country song, which I've never listened to country, but it's dancing in the country by I have no idea who it's by. And then I really like a lot of elevation worship songs, but definitely pop music
Pop music is
the most part. Okay.
I I love I love that you're listening to a song right now called Dancing in the Country that you have no idea who sings it.
That's Like, I just yeah. I don't really care about that part.
Isn't it crazy how phones and computers change the world, Sarah? Like, she doesn't have an she doesn't have albums she likes. She has playlist that she's made. Like, you know, I like this song by Tyler poor Tyler Hubbard who released dancing in the country and
Wait. I think that's right.
Yeah. I got the Internet too. Don't worry. And so, like yeah. Think I just whipped that out of my ass.
I was like, oh, it's probably Tyler Hubbard. Yeah. But this poor guy, you're out there listening to a song. You have no idea who he is. Oh my god.
Yeah. The the world's different. Alright. Okay. Well, listen.
Christian Mingle is probably where you're gonna find this kid. Right?
Right? Possibly.
Don't they got the apps?
Yeah. You
don't get you don't care, do you? You don't care about this boy thing at all right now, do you?
I mean, it's it's like, obviously, it's something that I want. Like, I would love to, like, meet someone, but, like, I don't know. Like
Are you gonna want the boy
doing the best that I can.
Like You just throw it out there or whatever. It it works eventually. But but are you gonna need this kid to, like, understand your diabetes? Is that gonna be a prerequisite, do you think? Like, or no?
For sure. For sure. I mean, if they fit my requirements, like, they would.
I guess you're right. Like, self starter, like, decent person tries on their okay. Alright. So we're looking for okay. We're looking for a selfless person who wants to wants to rub your feet and do whatever you ask him to do.
Is that about right?
I mean, yes. They wanna do that. That's great.
Oh, I know. Oh, I I actually saw my daughter the other day go, oh, John's coming over. That's great. And I was like, why? And she goes, I need somebody to rub my feet.
I was like, oh, does he does he know that's his job? And she's like, I don't know if he knows or not. I'm like, yeah. I gotcha. Alright.
So, anyway, this is you guys are fantastic. I I am I'm really happy we did this. I don't have a title for this one, though. I don't know what to call it. Dancing in the country is not right.
That's for sure. Poor Tyler Hubbard last
loves dancing. She is
a dancer. She didn't mention that, though, so it's not okay. Yeah. We're gonna have to find something out. I I'm not gonna lie to you.
I'll probably let AI tell me.
Yeah. I'll be curious to find out.
Well, I will too. We'll all find out together. And for the three of you, like, oh, AI, stop. Just shut up. Okay?
I yeah. It's enough. Go back online and complain to people about something else. Hold on a second, guys. You're done.
You were fantastic. Thank you very much.
Okay. Thanks.
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