#1979 Five More Minutes
Five More Minutes
Julie's daughter already had an immune deficiency, a liver condition and a heart issue when type 1 arrived on a family trip overseas. A nurse later told them how close they had come.
Jump to a moment
- Type 1 arrived on top of a long list. Julie's daughter was diagnosed with an immune deficiency at ten after fourteen bouts of pneumonia before the age of four, and received regular infusions until she was four. Later came alpha-1 antitrypsin deficiency, a confusional migraine at eleven that mimicked a stroke, and a heart issue that sends her pulse past 200 within a minute of running. Autoimmune conditions cluster, and this family has seen a lot of them.
- It happened on a family trip, and the signs were there. She had just finished high school. The family's thing is travel. Julie describes a daughter who never drinks suddenly drinking constantly, and the slow realization on the way home that something was badly wrong — followed by an urgent care visit where Julie had to ask a registration desk, more than once, to just prick her finger before finishing the paperwork.
- A nurse told them how close it was. Getting to the children's floor, the head nurse asked whether anyone had told them what another five minutes would have meant. Julie is honest that she can't be certain she's remembering the exact words through the trauma of it — but the message landed, and it shapes how she talks about urgency now.
- Her daughter has very specific limits. She will wear a CGM without complaint but can barely tolerate an ordinary bug bite; she went on a pump by day four. Julie describes sitting quietly in the room for moral support without speaking or making eye contact, because that's what works. They're currently talking through whether to restart a low-dose GLP for the inflammation side of things — a conversation for their care team, not advice.
- The college piece is the part she wants changed. Julie describes resident advisors who aren't permitted to follow numbers, campuses unwilling to accept liability even when families offer to sign for it, and the patchwork of state rules governing whether EMTs can carry and give glucagon. She now spends real time helping families she has never met, including one as far away as Bahrain.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed.
- Juicebox Podcast Facebook group — The private community, free to join.
- 504 plan builder — Free school-plan tool — useful background for the college accommodations discussed here.
Every word of the conversation
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Hi. I'm Julie. I'm Kate's mom. She was diagnosed at age 18, and I'm here to tell her story.
I am most excited for some reason today to, put right before the ad break in this episode, the Just Say Julie jingle from from MTV, which there... Do you remember that? She'd be like, just say Julie. We'll be right back. That whole thing.
I think I Go right ahead. I don't know. I think that might be wasted on anybody. I'll be the only one laughing. I'm sorry.
You said your daughter's name was Kate? Kate. Kate and Julie. Okay. Yep.
Are there kids, Julie?
Yep. An older... Two years older daughter, Madison.
Okay. And we didn't say Julie's age, but you told me earlier. It's okay to say here? I'm sorry. Kate's Kate's age.
Kate's 22, makes Madison 24. Is that about the other... The vibe? Okay. Alright.
Now we know the players. You're married? Yes. Okay. Four p...
Is there a dog? I guess I'll check real quick.
Cats. Cats. No dog. Okay. We travel way too much for a dog.
I don't wanna have to board a dog, but cats are easy.
It's a thing that you think won't be a big deal until you do it, and then one day you're like, let's go on vacation. What do we do with the dog? Right. Who's gonna feed this dinosaur in my house? Like like...
Dats are fabulous. Have somebody come every couple of days. Make sure they still have food and water. They're good to go.
Yeah. It's a it's a... To be considered for sure. Your youngest has type one. Yes.
Anything else with your oldest daughter? Does she have any struggles? No. No.
Kate has... She's our autoimmune girl. She has everything, and our oldest, nothing.
How about you and your husband? Do you have anything?
Well, they believe that I had hypogammaglobulinemia as an infant, and that's something that Kate... That was actually her first autoimmune disease that she was diagnosed with. She was diagnosed at 10 with that, but they believe that I had it too because I had pneumonia 14 times before I was four. But there was no there was no name for it back then. And you outgrow it when you get it that early.
Okay.
You outgrow it typically around age four, which both she and I did.
You're freaking me out. Is that a... Can you spell it?
Yeah. It's hypogammaglobulinemia. That's all one word.
Hypo. Gamma.
Gamma, g a m m a. Yep. Globulinemia.
Wait. Let's see how close I can do that. Do wanna spell it?
Hypogammaglobulinemia of MMC.
Chad GPD was nice enough to say, I think you're thinking of Okay. Oh, it's gonna help me say it.
It is a real thing.
An immune deficiency, diagnosed at ten5:19
It can be primary genetic or secondary to things like certain medications, blood cancers, kidney protein, losing conditions, or other illnesses. Diagnosed usually involves checking IgG, IgA, and IgM levels, sometimes followed by testing how well the person makes antibodies after vaccination. Wait.
So she was very low in IgG, and it started... About about two weeks old was her first illness. And it was just various things. It was UTIs and ear infections and hand, foot, and mouth and rhosiola and just all these things. And she was constantly having...
She she never had a high fever with any of them, just a really low grade fever. And she just was the happiest kid, always was the happiest kid. So when I would go to the doctor, well, she looks happy. And and she did, but something was going on. And the last time we went in...
And I can't remember all that she had going on, but it was at 10 old, and the doctor was just like, I can... Like, she had roseola again, and she she had the hand, foot, and mouth at that time, and maybe double ear infections. I can't remember exactly what. And we were so careful about keeping her... She was born in December.
We're so careful about keeping her away from others in the winter and all this because she's just constantly sick. Yeah. And, anyway, he sent us to an immunologist who did testing, and it came back that she was low in IgG. So for... This was ten months.
Until the age of four, she got IgG infusions, the one people donate to plasma for them, for... She did it every four weeks until she was four. And that is what, I mean, kept her alive, I'm sure. It was miserable. It was an all day infusion that we would go for.
And...
Yeah. So... And you had...
That was the start
of it. They think you had it as a baby too?
They do because they say... And this kind of plays into her next autoimmune disease too, but they, they say that it typically... The reason why that... My doctor said the reason why he didn't, like... They didn't realize it until 10 was that it usually only comes out in the form of upper respiratory infections.
I don't know about only, but typically, like, lots of upper respiratory infections. And Kate, to this day, still has not had one.
Can I read you this?
Never had.
Let me read you this little bit here. It says Okay. Hype... Oh my god. Hypogammaglobulinemia.
Here's what I'm gonna do. Ready?
Gamma globulinemia. Yep.
Okay. Is primarily an immune deficiency problem, not an autoimmune disease?
Yes. I have read that more recently.
Okay. So...
So maybe... Yeah. So maybe that isn't autoimmune. Maybe it's just immune. I'm not really sure.
I asked it. I asked my overlord before it comes and takes us. I I saw some warnings today from some AI people that were 100% gonna die. But, you know, until then, let's learn. I said, what disorders can follow this later in life?
And it said recurrent sinus and lung infections Right. Bronchiatitis, permanent wide anything. Damage the airways. That... That's a no.
Autoimmune diseases, particularly autoimmune low plate... Platelets, autoimmune hemolytic anemia, thyroiditis, rheumatoid arthritis, pernicious anemia, some other autoimmune conditions also occur more often, GI problems, inflammatory granuloma disease, jeez, lymphatic interstitial lung disease, enlarged lymph nodes, and an enlarged...
Well, thank you for this whole list. This is great.
Yeah. Sure, Joy. Just... Later the story will be like, lady makes podcast, throws herself off roof. Should I read where it says certain cancers?
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I have a little bit. Yeah. But you know what? We have so much She has so much going on.
Julie's like, listen.
That they told us she... And they won't ever say, like, oh, I'm fully in remission. But, basically, if you get it before the age of four
Yeah.
You usually outgrow it by age of four or five. If you get
it after age five, you have
it for life, and it's called something different. It's not... Because this is hypogammaglobulinemia of infancy. Right. And so then my mom, of course, at the time is like, well, you had pneumonia 14 times before you were four.
Fourteen bouts of pneumonia11:41
The doctors, like, always let us in the back door, and they would just call in prescriptions as soon as I started the little, you know, weird noise or whatever. And...
How old were you back then? When were you born?
I was born in '76.
You're lucky they didn't throw you in a river. You know what I mean? Yeah. I don't know. Crazy.
Crazy.
But back then, they just, Just quit.
Yeah. They were like... You know what? I'll quit. We'll get another one.
Right. What in the world?
Wow.
So then so then at the end of that... And and we got the antibodies or she got the... Yeah. She got the antibodies. Every time, it was from over sixty thousand people every four weeks.
And, so at the end of that, when she finally got to the point of, hey. She was going longer than a month without needing antibiotics for something or whatever, not getting sick for once, not getting a cold or whatever, our doctor was ready to, kinda dismiss us from that, but he said autoimmune because they thought... Back then, at least, said autoimmune. But he said autoimmune diseases or disorders or whatever usually, like, go together. So he tested her for a whole gamut of other autoimmune disorders, and she came back positive for alpha one antitrypsin deficiency.
And so alpha one affects the lung and... The lungs and the liver. Basically, it makes getting lung disease or liver disease way easier than the average person. So then, of course, this is another hereditary thing. So then they wanted us to...
We all got tested. And my husband and I, one of us is the carrier for the lung, and one of us is the carrier... Is a carrier for the liver. And poor Kate got both, not just as a carrier, but she has both. So...
And that was really hard to figure out back then. So she was four or five at the time, and there wasn't a lot known. We're in Michigan. We actually drove, to Chicago to speak to a specialist. And so this is what kinda ties into the upper respiratory infection.
The the doctor that we spoke with said, I really don't think she's ever gonna have issues with this. He said liver, usually, they're born jaundice and have a lot of those issues, and then later in life have liver disease. Or... And and he said, and with lung disease, your daughter should have had all of these different lung diseases with the hypogammaglobulinemia. He said, I bet she's one of these people that could smoke a pack a day and never develop lung disease.
And he said, so I really don't think you're gonna need to worry about this, but just have your doctor... Like, I didn't need to see a specialist for that.
Mhmm.
So she she gets ultrasounds on her liver every now and again, and we do tumor marker, blood blood work, and she just... She's never to this day had anything with upper respiratory. So That's crazy. So we're so we're not really worried about that one.
Yeah. Which... Does she have other issues beyond the type one today?
Yeah. She has other stuff going on too. Yeah. And the other interesting thing is this... That she gets big things.
She gets the big, you know, the big autoimmune diseases and whatever, but she doesn't get the little things. Like, everybody can have a terrible cold, and she might have it for twelve hours. Or everybody can have a terrible stomach bug, and she'll never get it. Or she'll get it... She'll throw up once or something.
Mhmm.
So I I don't know if that ties back to all the antibodies she got as a kid or if that... I don't know. It's interesting. Yeah.
It was all very... It's just hard to track. Okay.
Right.
How old was she when she got type one? 18. Eight... Oh, this is just four years ago.
Right. Right. Perfect.
So she's got other medical issues.
She's got more in between there. Yeah.
Throughout her life. Do you wanna......
She was... Yeah. At 11, she was hospitalized for what we eventually got diagnosed with a confusional migraine, but hers mimicked a stroke. And so she went by ambulance, and it was crazy. But they they ended up saying it was confusional migraines, which I know that that's not necessarily autoimmune, but there is there is some thought out there that could be an autoimmune issue.
A migraine that looked like a stroke15:55
Mhmm. Anyways, and she had another one at age 12, and then fast forward to 18, we're, yeah. That's... That was the type one. Jeez.
And for and for us, we're on... And that actually came not just type one, but also Hashimoto's. And whatever attacked her beta cells, they believe also attacked her heart. She can't... Like, when she goes to exercise, if she goes to run, within a minute, her heart rate's over 200, and she's, like, in great shape and all of this stuff.
And we have been... I thought that the accelerated heart rate like that was something to do with type type one because it came on at the exact same time. But, finally, we just now, this past spring, got a doctor who... He believes that it whatever attacked her beta cells also attacked her heart, and that's why they came on at the same time. And she's on a low dose beta blocker, which is helping somewhat so that she can exercise a little bit without being so completely uncomfortable.
But...
Oh, god. Well
Yeah. First of
I don't often find myself going, I'm sorry, but I'm so sorry. Yeah. Yeah. That's a lot to say. Is a lot.
Yeah. How does she manage the psychological side of all this?
Oh, she just likes to pretend she doesn't have it. Unfortunately, then there is... It's a lot of just, you know, I'm okay and do what I have to do, and I'm not gonna think about diabetes, and I don't wanna talk about diabetes. Because that's the biggest one. Like, Hashimoto's, they just told her...
Like, told us that she had it with the blood work, but she actually doesn't have any symptoms. We're just constantly doing blood work to monitor that and watch for symptoms, but she doesn't have to take
any medicine for that yet.
And so that... Really, the only one, that she's having to do any, thinking about, of course, is type one diabetes.
Yeah. But, I mean, the the toll of knowing that something happened to your heart is that's gotta be...
Right? Except for that, you know, we've been through all the testing. We've done all the stuff. There's no physical damage to the heart. There's nothing they can find wrong with it.
Just the racing when she
Just the race. It's it's always elevated. Like, we go on a walk, and mine will be, you know, way lower, which she's in way better shape than I am. And hers will be... Hers will hers will still be higher than it should be for sure.
But what... When it bothers her is when she she enjoys running, and she just basically can't. And she she will a little bit now because she just got on this beta blocker, and she's pretty excited when it might just barely touch 200, you know, when she runs a mile or something. And it it does it immediately, though, still. So I don't know what they'll
And a bulk of this happened as she was finishing high school?
Right. So we had just finished... She had just finished high school, and, our family's big thing is travel. Our goal was to go to all 50 states with the the four of us before both girls were in college. And it...
The trip, and a daughter who wouldn't drink19:00
So it lined up perfectly that we were gonna go to Alaska after Kate graduated college... I mean, high school, and that would be our fiftieth state together. And it was perfect because she had always wanted to been... Always had had always wanted to go. That's her...
Like, she's just the outdoorsy
Yeah.
Mountain, all that stuff, science geek person. So she was super excited to go. And so this is... So we went, and that's when she was actually diagnosed while we were on vacation in Alaska.
In Alaska?
In Alaska. Who... I mean, and they... It was crazy because it was it was after COVID, but yet they were, like, still in cove... They were behind us in how we were handling things.
And I'll start at beginning, though. She... So we're on the plane, and my girl, we always said she had the bladder of a steel trap. Like, she never used the bathroom ever since she was tiny. So she's getting up on the plane going constantly.
Mhmm.
And I'm like, what is going on with that? That's so weird. And then she is any hike we're on, her heart rate, of course, who knows if this is... It it could have been at the same time DKA, but her heart rate is crazy high. And my girl who never drinks, like, we're always like, you need you need to be drinking or you're gonna be dehydrated.
Like, it's just... She's never thirsty. It's never... She's downing my water bottle. She's downing her water.
You know? Like, she just... Every single hike. And and she's she's ornery. She's irritable.
She's never like that. And... But, you know, you have excuses for everything. Like, you just have excuses. I...
I'm thinking, like, well, she's going off to college in a few months. Of course, she's, of course, she's stressed and anxious. Like, that's, you know, that's what that is. And her senior year, before this, she had played sports all three seasons, but her senior year, she decided to not play any sports, focus on her art. So then she would say...
She's like, well, I haven't been playing... You know, I haven't been exercising like I used to. I mean, granted, she's a hundred and twenty pounds. You know? Like, it's it doesn't make sense.
It all feels excusable, though.
So... Right. So we just keep excusing all of this. And, finally, one day, we
wake in the... Let's see. Was it in the morning?
No. I think we had been out doing something that morning, hiking. Who knows what? And we came back to the hotel for a little while before we were gonna go out to dinner, and and I had talked to her. Like, I'm googling.
Right? I'm googling everything. Well, it's coming up. It's coming up diabetes. And I'm like, well, that's stupid.
My girl doesn't have diabetes. Look at her. Like, that's... She's not overweight. She's not old.
She's... You know, that... That's not it. So I... But but I'm not getting any other answers.
Right? Like, everything's coming back to that. And and so, anyway, she starts slurring her words. And and we had talked to her before. Like, Kate, you're obviously not feeling great.
Like, let's go to urgent care. No. I'm not ruining our vacation. Which her just being like that, like, snappy is not her personality.
Mhmm.
So that was weird. Like, everything was just weird about it. And finally, my husband and I were like, okay. We're we're taking her. Whether she wants to go or not, we're taking her.
And to me, I'm like, it's something to do with blood sugar, but, you know, it's gonna be an easy fix. But... So I'm like, Kate, we're going. We're going. You obviously don't feel well.
We're gonna go to urgent care. We're gonna get this fixed. We'll get on with our vacation. And so we made her even though she... And and she she...
Of course, we couldn't have made her. She's 18, but she she gave in. She's like, okay. Fine. Whatever.
But she's mad about it.
Julie, you're lovely. I I know she's 18, but, like, I... You know, you're like, did you wanna go to college? I was gonna help pay for that. So why don't we just go to urgent care?
Get get the zip ties. Okay? Yeah.
Well, if I would have realized how emergent it was, yes, it would have happened. I would... But I was...
You know, I'm not I'm not... I have no idea. Yeah. Also, can I just can I just tell people twenty minutes in how you told me you were introverted before this started?
I totally am,
though. Well, you are.
Phone right now. Like, this is easy. Oh my gosh. Yes.
You are shot out of a cannon doing such a good job of telling your story. I don't think you need me here. Like, five times a year, I get down to somebody that I think I didn't need to be here for that. And Gosh. So Oh my word.
I I am interested in... I just wanna... Right before we get you to the urgent care, which I can't I can't wait to hear about that.
Yeah. That's the story too.
Northern exposure style urgent care you were probably at with a moose wandering through it. But Right. When you have a kid, 18, who's having a medical issue, who also had headaches when they were 11 and 12 that mimicked a stroke. Have you been waiting for the other shoe to drop for six years? You have For sure.
Right? Okay.
Yeah. Okay. It's always been one thing after another, and we'd had a little space in there of nothing terrible. So, yeah, I think you're just kind of always waiting.
Can I share? I hate that so badly, that part of all this where things have been good for a while and then suddenly something reemerges or its head pops up and you go, oh, that's right. Our family has this going on.
Right.
Do you know what I mean? Right. Yeah. Like, it feels... I I I hate that.
I hate... I I hate when it feels normal for long stretches, and then suddenly it isn't. It's Right. It's a whole... You have to learn how to not get knocked over by that every time it comes up.
Anyway, that's... Obviously, I'm not gonna tell more of a story here because you're in the middle of something, and I don't need to hear a review about how I made this about me. So why don't you tell me when you get to urgent care
Okay. What happens next? So we get to urgent care, and I go up to the girl at the registry, and we start giving her info. And I said, you know, something's something's going something's going on here. I...
“Please just prick her finger”25:00
And I'd... So in my head, I'm thinking, oh, it's high blood sugar probably because of what I'm reading, but then they'll just fix it and we'll... And we'll move on. So I said I would just... I would really like to get her finger pricked and whatever.
So I'm giving her info. When I get to her age, she's like, oh, she's 18? And I said, yeah. And she said, well, then I need to be talking to her. And she's staying behind me this whole time, which she's she's way more outgoing than me, but she's mad.
She doesn't wanna be there. She doesn't wanna do anything. So the girl looks at her and says, how do you how do you feel? Kate says. I feel fine.
I'm fine. I don't need to be doing this. And I was like, oh my gosh. And so then the girl just stops registering us.
I'd be like, lady, listen. She doesn't do her own laundry. Okay? I pay for everything. Right.
Yeah. Exactly. Like...
Yes. Luckily, a nurse hears me from the back just saying, just please please prick her finger. I... Something is going on. I...
Would you please just prick her finger? That's what we're here for, and and she's she's not herself. This is not like her. And and this... So this nurse comes out and said, skip skip that.
Come in this room. So she and I... My husband's waiting in the waiting room. Our other daughter's in the car because, of course, we're on vacation, so we're all together everywhere. So we...
She and I go into this room, and I basically have to hold her down to get her finger pricked. I mean, it is so unlike her. If you knew her and the joyful, happy girl she always is and just whatever, it was crazy. So she... It it pops up 04:38, and she tells me it's 04:38.
And I was like, okay. Like, what does that mean? And she's like, oh, that's very high. Okay. So what does that mean?
And she said, it means that you don't even need to finish registering here. We're calling an ambulance, and she's going to the ER. And I was like, oh, okay. Okay?
For me
for what?
You don't need to
call an ambulance. We're... Our car is here. Our rental car is here. We will we will go.
She said, you cannot stop anywhere. You go straight to the ER. So that was our Yeah. That was our experience there.
Did she keep fighting with, like like...
No. I mean, after the... After she got it poked and whatever, she wasn't, like, fighting. I mean, she's mad, and she... Even going out to the
car, I don't wanna ruin her vacation.
I don't wanna go to the hospital. You know? This kinda... I mean, just hours
of life. Yeah. Not being reasonable.
No. In slurring words, you know, and just, I mean, just scary stuff. Wow. So... And my husband wasn't in there.
So we get in the car, we're driving. And my other daughter says, hey. I have to use the bathroom. And he says, oh, there's McDonald's right here. We could stop at on our way.
And I'm like, uh-uh. And I'm trying to not be, like, scare anybody in the car or... And Kate, I don't know how much she's even understood. So I'm like, oh, no. She said we're not allowed to stop.
She'll have to use bathroom Yeah.
At the hospital. We... US... USOBs weren't in there with me just now. This is not a thing.
Like, we're
This is not.
Yeah. Like, lot of even
have us... Right.
We're Put the windows up. Turn on the child locks, and get to the hospital before Right. Exactly. Dives out the window of the Avis rental. Okay?
Right. Yeah. Yeah.
Yeah. I got it.
My compliant girl who's so happy and how easy... Always always been my easy, you know, easygoing kid. Yeah. Crazy.
Oh, wow. That's really
sad.... Get to the ER, and I say we're here because of a high blood sugar. And the guy... Somebody comes out, pricks her finger. He says, is she type one or type two diabetic?
And I said, is that what that means? And he got this look on his face like, oh, crap. I probably shouldn't have said that. And he, like, turned and walked away, and that was my first, like, indication that Let me read she could have diabetes.
We're about to find out if she's type one or type two. Right. Sorry. Sorry. I used the wrong lead into that sentence.
I think it's it's such a common story for people who who walk into an ER usually and go like, hey. We're here because they have diabetes. And then there's that confusion because they don't realize what you're saying is I just figured out they have diabetes. So you're in a slightly different situation, obviously. Wow.
Right. Wow. Wow. Wow. Oh my gosh.
So, she did ruin the vacation. She was right about
a redo. She gets a redo. We'll talk about that later. We could
go forever college. But she was right about that, though. She was like, yeah. This is definitely gonna ruin our vacation.
But still, I don't know what's going on. I'm still assuming we're gonna bring this down. Okay.
So she has Really? Okay.
Oh, I have no idea. I don't have anyone in my family with Like,
I don't know what that means.
So I'm still thinking we're gonna get this down. We're gonna be out of here in a couple hours.
Like... You know, that kind of diabetes that kind of diabetes you just take care of in a couple hours.
But isn't it terrible that, like, so little has known about this terrible disease that nobody... Like, you know, I
mean Julia...
I'm an intelligent person.
Used to say I used to say all the time that if we made a list of all the things that none of us know about... Because I see people get upset online. They're like, well, we need to... You know, people need to understand this better. Like, people do not understand anything that is not affecting them.
And and to ask somebody to understand the entirety of the world would take their whole life and isn't reasonable. So you learn about things as you need to and, you know, here's the thing you need to learn about. So Right. It's just... I I am...
I really am desirous of knowing if the health system was up to par. Did you get good help? Like, what happened?
Well, like I said, it was, you know, two years after COVID, and they were behind. So they put her into... They took her back to the children's wing so that I could come with. My husband could not because it was only one person at a time still. And so we went to...
So... And I'm trying to... Like, I don't know what I'm doing. I'm trying to learn all this and write and texting my husband who's in the waiting room and trying to figure all this out. But, yes, they were they were really fabulous there.
They had... They were just really good good people, and they would... So we're in Anchorage, and they would... Like, even at one point, and I... While we're...
It was kind of at the beginning of it, the... An ICU doctor came in, and he's like, I just keep hearing about this girl with these levels of... Her pH levels and all this, and I... And I'm hearing that she's awake talking, and she shouldn't be, and I have to see this for myself. And, just really kind people.
Awake when she shouldn't have been31:23
And they and they broke it to me easily because I was like, you know, how long do you think we're gonna be here? And they're like, oh, well, with a with a diabetes diagnosis, this this will... This is often a few days. And I was like, what? We're on vacation.
We can't do this.
We have a...
Like, I've been so clueless.
We're riding a moose tomorrow. What are you talking about?
Just get this blood sugar down. We're gonna get out of here. You know?
I've I've only been bitten by a thousand mosquitoes so far. I need to get back outside.
Oh my gosh. So they they said, you know, she she presents as type one. We're assuming type one, but her age could be type two, but we're just... We're gonna run the test. But until then, we're gonna
Yeah.
We're gonna assume type one. And I remember there was a period of time that they couldn't give insulin until they got... Brain swelling was thrown around. All these things were thrown around, and I was just in total shock.
I was gonna say, like, how crappy is it for a doctor to basically walk in a room and go, oh my god. Is this kid alive? That's insane. Let me look. Let me look.
Right. Yeah. Yeah. And and
I just
wanna talk to her. In front of you. She's
not talking normal. She's... Her her grammar's off. She's saying weird things, but they think it's... They they don't know her.
They don't know how she normally speaks. And so they're like, she seems good to me. Is this normal? I'm like, no. That's not normal.
Like, she's... She can't even finish what she's saying.
When they get her levels straight
Yeah.
Does she have recollection of all that?
No. Not a lot.
No. Okay.
Nope. Well... Nope. And we thought we were gonna lose her at one point. They had to do a central line and...
But with ultrasound to get that in. That, she remembers like it was yesterday. She has... My poor girl who's had blood work every four months her entire life now has this extreme needle phobia
From that one moment.
Yep. From that one moment.
What do mean?
I don't even remember them using. I don't think they ended up using it.
I I have to ask you. What do you mean that you thought they were gonna lose her? Where...
They they were, some... With the brain... With brain swelling and pH levels, I can't even remember all the stuff now, but they were just talking about how they had to get that down before they could get the... Before they could start her on insulin. I don't know.
I'm sure I blocked a lot of it too. I was in this trauma.
Like, I
don't know what's going on. At one point, though... And we... It wasn't right away. It was hours after we had been there.
They came in, and her IV was working fine, but they said they needed to put this one, the central line in. Mhmm. And so, yeah, that was still affects her to this day. So she remembers that like it was yesterday.
You just made me wonder what happened to a soldier in, let's just say, I don't know, the civil war who had to have their leg knocked off with an axe after they were, like, hit with a cannonball. Like, I wonder what level of medical trauma they had going through. Yeah. Yeah. Yeah.
You know?
This is just my kid. I'm not even experiencing it myself, but I can't. And then her... In her... Yeah.
Her experience fresh for you still. Right. Yeah. For sure. Yeah.
No. No. I can I can see? And so she's... She developed pretty quickly, like, a needle phobia.
Did... Is it a thing she had prior to that?
Never. I mean, she'd gotten... Because of all of her other things that she... We kept track of, she was she was getting, through different specialists and whatever that she was going to for different autoimmune, whatever, she had... We got blood work every four months.
So she was... I remember her as a two year old going in for these IV infusions. She just sticking her little fist up there, like they always did it in her hand. She'd get that IV put in her hand. Like, it was nothing.
And now all of a sudden, my kid has this crazy xenophobia
that she's never had before. Maybe her brain just had enough. You know?
Yeah. I don't know. Yeah. She still has to fight it to this day. Like, to go for blood work, she has to...
It's it's... She powers through. But...
Yeah. I wanted to ask where does it affect her? Does it... Does she wear a pump? Yes.
CGM? Yes. Do those bother her to put on?
They did, but she learned to do it.
Okay. And so going to get a blood draw still bothers her. How about insulin needle or a pen or anything like that?
Yeah. We don't... We never have to do that. We have it all in case we ever have to, and she would...
You've never tried, though? You ever pull one out and just walk towards her to see what happens? Not the test.
That's not
how you're supposed to test that. I'm sorry.
No. No. She would... We always talk about, like, if if we... If she had to, like, first, would...
She would want me to do it. And, obviously, if I wasn't with her, she would she would figure it out. She would have to. She carries a pen as backup. Like, we...
She carries a pen. Like, if she has to, she would she would figure it out. Yeah.
Oh, you hope. Yeah. What's the, what's a what's a needle phobia look like? Like, what is that... Like like, functionally when you go
to the... Like like, when she goes to get blood work, like, will... I mean, she has to, like, make herself get in there and sit in that chair. And she wants me nearby, but at the same time, sometimes I'm too much, You know?
The central line36:24
Heart racing? Is she defensive?
Is she... Defensive? Like, she'll pull her arm away. She doesn't want anybody, like, talking, joking, anything. Like, just let me...
And she always has to have so many tubes that feels like. You know? And and then afterwards, she feels like she can feel it in her arm for a long time. I don't know. Very...
Physical pain or feeling that she described?
Yeah. Physical in her arm. Like, a feeling in her arm afterwards. Like, just that. I don't...
Arden describes Arden describes that it can feel like a lightning shooting through her.
Okay.
But we had this really interesting thing the other day. She was using an injector pen. So she was injecting a GLP. Right? Uh-huh.
So those self injector pens. And I was sitting next door just kinda like... I I I realized you must know exactly what I'm talking about. Like, you're sitting very quietly being there for moral support, but not saying anything or making eye contact. Right?
Yeah.
Trying to pretend you're not there.
Yeah. But but you're not allowed to leave, and you're also not allowed to help or talk... Yeah. Okay.
Or say one word.
Right. Yeah. It's a very interesting affliction to to be with. Arden is moving through it, and she's she's getting there. But...
So, anyway, this... I thought really interesting thing. Like, she... If she can get distracted by something else physically, it can help. And she has this...
She's going to put the GLP in her thigh and kind of on the side of her thigh on her right leg. Right? And I look and I go, you know, I can see that it's not happening. She's, like, you know, positioning and repositioning the the injector pen, like, a thousand... As if there's, like, a better place.
Do know what I mean? Right. Yeah. Is this the thing you've gone through with with yours?
Okay. Just in
the hospital, though. But...
Yeah. Okay.
So so so you're watching. It's like a squeeze. No. That's not the right place. That's not the right...
Over and over again.
It's right here.
Then all of a sudden, there's a pause. I can't do this. I'm like, you can do it. I can't. Turn up.
Don't talk to me. Blah blah. And then I noticed on the inside of her knee, there's, like, a little bug bite, like a mosquito bite or a spider bite or, like, she has a little raised, like, red thing. I said, oh, look. You have a little bug bite.
And I just scratched it a little bit. And she goes, keep scratching it. And I was like, okay. She was like, scratch it harder. And I was like, okay.
She goes, do not stop scratching it. I'm like, alright. So now I'm scratching this bug bite, and she injects the GLP. Mhmm. And it ends and she goes, that's the least painful one I've ever had.
Oh, wow.
And I thought I... It's such a interesting, like, mental physical connection. Do you know what I mean? It really is.
Yes. It really is. And I don't even know if it's the pain for her.
I I don't know. Yes. It's...
Right. It's all... Like, before before Alaska, going get blood work, we do it all the time. No problem. Put my arm up there.
Do it. Done. And now it's this... You know, I have to talk herself into it. Big thing.
And we've always done... Because she's done this her whole life. We've always done, like, a Starbucks or something afterwards. So we talk about that. You're gonna get your...
You know, we'll go wherever you wanna go and get, and we still do that to this day. Like, you gotta be treated for having to have
crappy things torn in your life. Well, you know, it's interesting because people will wonder. But Garden wears Omnipod. She wears Dexcom. Right?
Same.
Yep. Yeah. She just had any trouble putting that stuff on.
So she... Omnipod? No problem. Because you put it on from your... You click it from your phone.
Mhmm. Dexcom was so difficult because you have to physically push the button on the injector thing or whatever it's called, the applicator. Well... That was so hard for her.
Yeah. I don't... Listen. I don't say Arden loves it. She's not excited about it.
I'm sure no one who's putting on any device is excited about putting
it on.
That's not my point. But she doesn't pause. Like, she, you know, she puts her pod on. Arden, we pinch up for a pod insert, like, little pinch up, push the button.
Uh-huh.
Goes in to... Like that, and it's over. Right? Like, you don't really talk it. Sometimes you rub it out or that one really got me or something like that.
Right. No. Like, it feels like lightning. Like, nothing like that.
Right. No. Nothing like that. She does it all the time.
So I have a misstep. I don't know how long ago this was now into this whole, like, journey with the the needle phobia thing. Because Arden, like you, was... Or like your daughter, was really fine for a long time. And then one day, it just got sideways.
Yeah. And it was during the blood draw. I've described before, if she was Spider Man, she would have been on the ceiling because she backed up up onto a table and kept backing up. And if she could have stuck to the wall, she would have been gone. And and I had to take her out of the room into a bathroom, calm her down, get her ready to get this blood draw done.
I don't remember how old she was. I don't think she was a teen yet. I think she was younger. Okay. And then you didn't really notice it here and again until all of a sudden it was just like, I can't...
What she'll tolerate, and what she won't41:10
Like, one day she needed to... I I... We were in a situation. This is years ago. And I was like, hey.
Your blood sugar's not moving. I I don't know if it's the site or not. Can we just inject with a syringe to see if that works? But we hadn't given her insulin by syringe in so long. She just sort of must have forgot about them.
Because she's like, yeah. Whatever. And then I pull it out, and she goes, what's that? And I was like... And she was young, and I was like, it's the needle.
And she's like, woah. No. No. No. No.
And I was like, okay.
Doing that. We're not doing that.
So before she went to college, I said, Arden, listen. You're gonna have to practice giving yourself insulin with a needle a couple of times because you... If that comes up and you're out of state, like, you need to be able to do this. She did it one time. She disappeared in the bathroom for two hours Mhmm.
And came back out. And she's like, I did it. I was like, you did it. I thought you were dead. Like, I thought you were in there for so long.
I thought you fell in the toilet. So my grandmother would have said, did you fall in? Like, you know, like... So... And even then, I didn't realize, like, the weight of it.
But anyway, so into this process, like, just a year or two ago, I don't know what possessed me. But I said to her one time, I'm always so surprised that putting on the CGM doesn't bother you. And she goes, why? And I was like, because you can see the needle. And she goes, what?
Oh, shoot. Should I take those words back? And I was like, nothing. What? What the...
And I could even hear the voice of my own head going, yo, man. What are you doing? Yeah. Yeah. Right?
And then... But then I was like, alright. Cat's out of the bag. And I thought, well, maybe she'll realize what's going on and then see how the other thing should, like... You know?
Because the g seven, after it deploys, like, you can flip it over and you can see. You know?
Like Right.
A needle comes like, wazoom. It comes out. It hits you and leaves behind the wire and it's...... Puncture? Yeah.
And she and she looked at it, and I'm like, now my heart's in my throat because I'm like, oh my god. If we can't get the CGM on, I'm gonna I'm gonna throw myself out of a window. I'm like,
Right. I'm That's not your fault.
I'm gonna walk into my wife and go, hey. Sorry I asked you out all those years ago. I give up. I'm leaving. And, like, you know, like...
But instead, she she looked at you and goes, no. That doesn't bother me. And I was like, wait. What the hell? So no no problem at all with the CGM.
So no prob... Yeah. No problem with Kate either except for the CGM was an issue, but at the beginning, she needed... She would put it on, get it all ready. Again, we're not talking.
We're not looking. We're not whatever. And then she would be like, can you push the button? And we would push the button. And this is how it went.
And she would... But first, it would be... I mean, it would be thirty minutes of sitting there trying trying to push the button trying to push the button. Couldn't do it.
Ironically, other than this this, like, a need... Like, a physical needle that she has to control, Arden's... Even when she goes for a blood draw, she hates it. She sits down, puts her arm out, and sits there. Right.
Like... And... But... Yeah. Isn't it crazy?
I don't know. Is crazy. She tried... We tried some things to help her with it. We haven't really found anything completely valuable yet.
I would say... I'm not ready to say what I think might be working now, but but things have been better. And so I'm I'm very hopeful. We actually just had a talk before you and I started recording because I very much want her to go back to microdosing her GLP to keep coverage for the inflammation piece of the whole thing to... Like, I would I would like her to inject half of it about every four...
I'm not a doctor. This is not advice. Nothing here 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.
What I would like her to do is to inject half of it about every four or five days.
And I listened to one of the podcasts or something where you were talking about, like, possibly having those mixed in. Like, that would be such a dream come true
for us. Yeah. Yeah. Yeah.
Because because injecting herself with something like that, I I don't even know.
Yeah. Something... I I don't know if that's even feasible. Actually, I just brought that up with somebody today who was like, you should talk to my friend. He's a researcher.
He might look into that. I was like, oh, okay.
That would be... I mean, that would be amazing.
Yeah. So...
And... Think for a lot of people. Right? Like, for a ton of
type ones. I think more people struggle with this than you think. That's my expectation is that I think more people struggle with this than you think. Can you...
Which is crazy. Right? The people who deal with the needles the most out of... In life are the ones who are...
Yeah. And the and the doctors definitely don't think that because they always say the same thing. They're always like, oh, well, you're used to this. And and I'm like, that's not a thing.
No. It's it's like the opposite. Like, she did way better before this. And... Yeah.
Hey. Julie, give me one second. I'm gonna step away just for a second. I'll be right back. You...
I'll be literally back in ten seconds. Okay. My apologies. I'm in the... No worries.
I'm in the middle of moving my whole operation to somewhere else. And today, I'm in a room that... I don't even know if I wanna say this. I... I'm I'm in a room that has a small cage with, like, these little tiny lizards in them.
And and one of them didn't eat one of the crickets. And now the cricket is... It's out? It... No.
It lives in the cage now, but it's been in there for so long that it's got the wings, and the wings make the noise. So... Yuck. Yeah. So so, basically, what I just did was I just basically went over to the cage and just, like, misted it really heavy because that should keep it quiet for a little while.
But if you guys could just find the cricket needed, that'd be awesome. I... There's, like, five little velociraptors in this thing. You should see them when you... Actually, first of all, there's six of them.
I don't know why I lied. You said five. But they're the tiniest little things. But I swear to you, they are like a six inch version of a raptor from Jurassic Park. Oh, wow.
Anything they say... That they see move besides each other is dead except for this one cricket, which is living in there like... I don't know. He's he's he's in there running from him like OJ. You know what I mean?
It's like, he's just... He's... I don't know. He's just making distance. Do you think people even remember OJ?
I mean, if they're our age, they do. Right? Don't you have to?
I have to tell you. May I take a left turn for half a second? Okay. The people listening expect this to happen once. They'll be disappointed if we just hear your whole story.
Okay. And so... But I'm gonna fast forward in a second when I get back to you. I I I... I'm learning that one of the things from...
You you learn a lot as you... As you're older. Right? And as you've lived a longer and longer time. How old are you?
Mhmm. 50.
Okay. The first thing that I noticed was that, you know, the the the saying, those who don't learn from history are doomed to repeat it. Uh-huh. That saying should be, we don't learn from history. That's why we repeat it.
Because no no one really. What does that mean? Like, you... You're born and at some point, you're conscious and you see the world around you, and then this is your expectation that this is the world. And then the world shifts.
Right? Like, you you can see it happen in all different ways. Like, norms, you know, go from one side to another. I don't know if people know this, but, like, you know, the... How you would think...
What's a good example? Like, how you would think of the Republican or Democratic party right now in in in The United States. At some point in in my lifetime's history, those things were swapped. Like like, they... Basically, the things that one side found the most important shifted.
It, like, slowly went to the other side. My point is that things go back and forth, back and forth. So if you were born at one point, you would think, oh, Republicans, they mean this. And then... But if you were born twenty years later, you go, Republicans, they mean that.
Then you'll hear somebody go back when I was a kid. That that used to mean being a repub... Like, you know what mean? Like, there's... That that happened.
It happens with everything, though, and you don't realize it. And so, you know, even with, like, social stuff where people like, you know, we gotta fight against this. I'm like, yeah. I... Somebody already fought against that.
And before them, somebody else did it and some... But you're not aware of it because you didn't live through it. Right. I don't know what my point is other than to say that things really do, like, change and morph. And and as you get older, you can see it, and then it gets really frustrating that other people haven't lived through it long enough to see it.
And then when you talk about it, you sound like an old person. Right. You you sound like a guy goes, I'm... I... In my day,
and and...
But it's real. And if you're lucky enough to live long enough, you'll go, oh, yeah. Everything old is new again. It's a 100% true. Like, everything you think is happening for the first time in the world is happening for the the billionth time, and you don't realize it.
It's it's... I don't know why I started talking about that. I just know that that's the take... That should be the takeaway. Is it everything you think you know right now, you will watch go away and come back.
And Okay. I'm sorry. I don't know why you said any of that. Go Away.
Crickets. Yeah.
I mean, the cricket and the thing that vibe... It's hard to know how that happened, isn't it? Wow. How about that? Maybe I had a migraine stroke.
Who knows? By the way, first time anyone's ever said that on here. Congratulations. There should be an award for the first time anybody's ever said that. Anyway, your kid now needle issue.
It's interesting though. Like, making her way four years in using, like, stuff. Did she go to college? Yeah. She did.
Two two months later.
Two months later, she's
She hadn't even put the Dexcom on by herself at that point. Like, she still... She had still... She would sit there with it for so long and just couldn't do it and needed us to do it even up until, you know, however many days before leaving for college. And so she...
The plan was if she couldn't do it, she was gonna get it all set up and find somebody. She didn't know anybody. You know, find somebody. Can you push this button for me? Yeah.
But she ended up doing her.
How would you essence. How would you quantify how the last four years have gone?
Oh, she's amazing.
She's amazing. Diabetes.
Yeah. She's amazing. We... She got set up for success in Alaska. I mean, like, just...
Yeah. Absolutely amazing.
How did they set her up how did they set her up for success?
Well... Okay. So we got to we we got to go into the children's wing, so I was able to be with her even though she's 18. And it just so happened, like, I mean, this... Like, God just hit his hand, I feel like, in so much of this, like, all the steps.
I wouldn't have seen that she was drinking so much or going to the bathroom except for on an airplane. You know, all these things. Like, all this stuff led up to it. Being so close in proximity, like, something's wrong, all this stuff. And when we got to the Children's Floor, the the head nurse is like, did they tell you if you had waited five more minutes that she...
How close it actually was53:03
Your outcome would have been totally different? I don't I don't know why she said that to me, but that has just stuck in in my head. Like, just so thankful that we got her there in time and all of that stuff. Anyways, so another thing that was just kinda crazy is they're diabetic... There's a diabetic educator there.
So there was no endocrinologist. And I felt like they told me in all of the state, but I don't know if that even could be true or if that's just, like, my trauma remembering it that way. There definitely wasn't one at the hospital, which is a big hospital. No endocrinologist. So...
But there was a diabetic educator who worked with, a doctor out of DC, and we Zoomed with him one time. And she actually... She came back the day that Kate got moved to the Children's Floor. She came back from maternity leave, had zero appointments all day. Like, she showed up early or something, didn't have herself any appointments.
She... Her name was Olivia. I don't even know her last name. Amazing. She basically, like, lived with us, taught us...
And we had already been through, like... You know, I had learned sliding scale then. I was learning carb count and correction factor calculations and all... You know, trying to, like, going through the book with the charge nurse and doing all this stuff, trying to learn on my own and texting my husband and trying to, like, just... And Kate was a no.
I mean, she didn't wanna hear about it, plus she was just... She wasn't herself yet. Like, she just wasn't herself. She's still having grammatical errors and just not talking right. But, anyway, this Olivia was amazing.
And somebody at some point early on told us, like, you... Eventually, you'll get on a pump. I didn't know there was such a thing. I had never heard of such thing. Eventually, you'll get on a pump, and and all of this will be easier.
And I said, I want the pump right now. And I just kept saying that to everybody who came in. My insurance is amazing. My husband's public school teacher here in Michigan. Insurance, amazing.
I... We have great insurance. We want the pump. We have great insurance. I want her on the pump.
I want her on the pump. I I told everybody who who Who would listen?
The room. Yeah. We want her on the pump.
And one day, Olivia comes in and... Well, a a different volunteer came in. She's like, it's like Christmas morning. And so this is day two. She comes in with Dexcom and all the stuff, and she's like, I love it when insurance are so good, and they can provide you with all this stuff.
And she brings us all this stuff. Day four, Olivia comes in with Omnipod. I didn't I don't... I didn't know there were other pumps. I knew nothing.
Mhmm. She... Her husband is a type one diabetic. She says this is what my husband's on. She said there's a new one coming out.
This is June '22. June 25 is when she got diagnosed. She says that there's... Omnipod five is coming out. We can't get that yet here in Alaska.
And, actually, we couldn't get it in Michigan for a couple weeks or maybe even a month after we got home. But, anyways... So she's like, this is Omnipod dash. We're gonna get her set up on it. And she's like, we're...
She's going to go away to college in two months. Because we were talking... Like, we were talking... Is... Do I send her to college?
Like, how do... She's gonna be two and a half hours away from home. We don't know what we're doing here. And she's like, oh, no. She's going she's going to go to college.
Well, Kate's like, I don't wanna I don't wanna do this pre bolus and wait for my food to get cold and and, you know, all this stuff while I wanna be normal. I don't want people looking at me like, what are you doing? You know, go get your dining room food or your dining hall food and sit down like a weirdo and wait for whatever time. And so Olivia's like, oh, Lunjev. We're gonna put her on Lunjev, which burned.
So, hey, Fias. We're gonna put her on Fias. She's not gonna ever have to prebol us. Still to this day, she's never prebol us in her life.
Oh, that's cool.
And Olivia was like, you... We wanna set her up for success. What she... What what she wants to do. Is she gonna be weighing things in a dining hall?
No. So you're not gonna weigh anything. You're gonna eyeball everything. You're gonna figure it out. It's gonna be okay, but you're you're not gonna try to...
You're just gonna... So she whole plate swags always, and she's incredible at
it. Cool.
And Olivia said, we're not gonna... You know, Kate's like, well, I don't wanna... You know, like, she's always been... She loves sweets. She eats very well.
Like, she's very... You know, she loves her veggies, her salads, all that stuff, but she also loves her sweets. And she's like, you are not taking away your sweets. We're gonna take out sugar drinks, mainly pop, but... And and we're gonna take out real maple syrup, which she's added back in.
Settings, food, and getting it right57:45
But she's like, those are the those are the things we're gonna take out, and and you can do you can do everything else. And so that's that's how we started.
Yes.
So we're day four
on this pump. But you... Basically, by having luck and running into a person who is working there whose husband has type one diabetes Right? That's the launch you get. Yes.
Yeah. Just having having a knowledgeable person there to talk you through these little things.
And I didn't even know... Yeah. I knew nothing, like, until I got into your group and... Which was a couple months later or maybe a month later. I can't remember.
And that was from a different Endo told us to... But, I I found out, like, how rare it was that people are, like, saying they have to wait six months or whatever to get on a pump. I'm like, bullcrap. You don't have to do that. Just have to have to find the right people.
Right? Like, you have to find the right people to fight for it. Because clearly, I mean, we were in it on day four. I don't know what she did, but she made it happen.
And Well... And you had you had the insurance, and then you had somebody motivated to help you. And, yeah, who knows all the reasons? But, yeah, I I would say that it's a coin flip whether you get a knowledgeable person, and it's a coin flip whether you get... Like, I still...
I saw somebody arguing yesterday. You should really do MDI for six months. Like, somebody comes in and says, hey. My kid was just diagnosed. I don't know what to do.
You know, what's your best advice? And somebody goes, well, definitely learn shots and a meter. Do it for months. And I was... I actually jumped in.
I was like, look. I... Just let me be honest here. I've never held an insulin pen. I've seen one.
I've never held one. I've never used an insulin pen in my entire life. And, you know, I wish we would have gotten a pump sooner. I don't...
For sure.
You know?
I've had people I've had people in the group get... Kinda get after me a little bit about it too. But what... I'm like, my girl is stinking intelligent. She would figure it out.
Just like we had... Like, you might have to figure out a pump later. She'd figure out MDI. She would... I have no doubt.
Yeah. She gotta figure it out.
A lot of catastrophizing every question. Like, well, what would you do if it went away? I'm like, well, a, it's America. I have insurance. Like, there's a Walgreens every 45 feet.
Like, I feel like we can work it out. I... Listen. I... In that in that thread, I said, look.
It's a couple things. I think it's about understanding how insulin works. The delivery system's not all that important for taking for taking care of yourself. Right. You know, there's a lot of access.
If you have access, access is everywhere. So if, you know, if that's not a problem, then I don't think that's a concern. I've never held an insulin pen before in my entire life. And, hey, I said, let let me shock you here. We do not have a prescription on hand for long acting insulin.
Like, so... And my wife every year used to say to me, Scott, you really have to get, like, a long acting insulin script. It should be in the house. And I'm like, yeah. I don't think we need it.
And now, she's 22, and she's had diabetes since she was two. And since she moved to a pump, I've never had a script for because one... That's interesting.
Well, because... We have... We do have one, but, you know, have we ever ever ever used
it? No. Because if something goes crazy...
We take them on vacation with us.
I'll call the Endo's office and go, hey. Guess what? First time in twenty years. Like, to me, it feels the same way as, like, when my wife's like, hey. Keep that.
We might need it one day. And I'm like, throw it out. If we need it, we'll buy another one. Right. Don't remember.
Is ever coming up again....
Ever been a hoarder. But now that I have a kid with diabetes, you better believe I'm a hoarder of supplies. It's ridiculous. I definitely hoard supplies. But I...
I'm not that about anything else in my life. Like, get rid of it. Get rid of it. Get rid of it. Much more Yeah.
Minimalist, but not when it comes to diabetes.
Yeah. But I think the bigger point is that, like, it's to me... I mean, maybe you could disagree, and that's fine. To me, it's about how the insulin works and how the food impacts you. The the delivery system is secondary.
Like, are you gonna have a better... Like, listen. Is it gonna go better on, you know, a DIY app? Is it gonna go better on an algorithm you can buy from a company than if you're just randomly shooting in someone with a needle and you don't really know what you're doing? Probably.
But you're also... You'll be okay for a couple of days. Right. You know what I mean? You can keep yourself alive.
Also, you can keep yourself alive without short acting if you, you know, just inject long acting more frequently. So there's ways to cover your insulin needs for a couple hours till you can get to the the guy. You know what I mean? Like, I don't know.
Yeah. I I always am the type of person that, like, I don't want her to be anxious about this because it's... She's been more anxious since she's been diagnosed, and I want to relieve that as much as I can.
Yeah.
So I... We even have eye ports. Like, because of her needle phobia, she can do an eye port. Like, she did that in the hospital. She can do that.
So we even have those, and we take those. Or if she goes on a trip by herself or whatever, like,
she takes
that with
to Arden. I was like, Arden, why don't we just get an eye port and put it in? I was like, you're good with the the things, and we'll try it a couple of times. See what you think. And you know what?
Her response was more about the disappointment that she would have in herself for having to do that. That was interesting. Yeah. She was more like, listen. I don't I don't want that to have to be the answer to my problem.
Not that it wouldn't be or... Because it's actually a great little device. Like, you know Yeah. It is. Yeah.
It's fantastic.
Not that it wouldn't be or anything like that, but she was... She... I I felt that she was... She would have been disappointed in herself if that's how it has to end. Mhmm.
So I was like, alright. Well, here we go.
So the other thing that Olivia did to, like, keep... Get us... Launch us is she... From the very first... The beginning, we were the ones changing settings.
She was available to us twenty four seven. I don't know if I, hopefully, I wouldn't get her in trouble with that, but she was amazing. Like, we could get ahold of her literally anytime. She had a brand new baby, so she was up at all hours, and she was fantastic. But she told us at the beginning how to change settings.
So if I would text or call or whatever and, like, this is going on. Okay. What do you think you need to do? And, like... So we...
From the very first week, which was our first week of diabetes, we were doing our own settings. And I think that that just, you know, it set us up for success.
Certainly does. Yeah. Having the autonomy and the knowledge to make settings changes is, I think, one of the biggest predictors of success. So, yeah. That's awesome.
Well, this Olivia person, fantastic.
She's amazing. Amazing. And we wanted to cancel, like, the rest of our trip. We still had another... After she got out of the hospital, we still had another week in, Alaska, and the the whole team was like, nope.
You're you're enjoying our state. You're doing this. So the next day, we went on this Denali bus tour. Like, no signal, no anything. I'm terrified the whole time.
We have enough sugar to, you know Mhmm. Handle everybody if everybody had a... It was it was
all I think every one of us has been on some sort of excursion the first time where we're like, we're just gonna be normal. But the whole time you're sitting there going like, oh my god. Oh my god. This is gonna
be I'm not normal.
Yeah. Yeah. We're not normal. It's not normal. Does anybody know?
This is what's going on with my kids sitting over there. I am not... Even if it's just a car ride to the store, we have all felt like I... Listen. I've I've had that experience literally going like, well, I'm gonna go to the store and take Arden with me.
And it feels like, I don't know how am I gonna accomplish that. You you know what I mean? Like, in the very, very beginning. So... Yeah.
Listen. It's it's crazy. I... You know, it's just the opportunity to be exposed to information and quality direction. I I mean, you're...
I think you're making the point of of how valuable it's. Also, I've said expose or exposure a couple of times. We should call your episode Northern Exposure probably. Oh, perfect. Yeah.
Perfect. Is anyone gonna know that was a TV show about people living in Alaska? Probably.
Right. Right. Right. Oh, even if they don't, they probably... I mean, I don't know.
I don't know if it's worth rewatching. I'll just be honest.
No. Probably not. Yeah.
And we found out last night Arden's never seen Breaking Bad. We were all like, what? So we're trying to get her to watch that. Alright. Anything that we have not talked about, anything that you wanted to say?
Oh, gosh. There's there's a lot more. I don't know if you wanna hear it
all. No. No. Good. But I just...
Do you want to?
You're you're chatty, and so... Which is fine. It's a podcast. It's awesome. But I I don't want I don't want us to talk about one more thing and eat up all your time.
So, like, I wanna focus now on, like, what else do you wanna talk about?
Okay. When we got home, we went to an adult endo thinking that was gonna be the thing. It was the right thing to do. She was 18. It was horrible.
Two endocrinologists they left crying1:06:09
The person did not know anything about her pump and was giving us wrong information that we already knew from just being... Like, we've been... It'd been a couple weeks diagnosed at this point. And, so that was really scary adult. And I and I read things all the time now about adult windows not being great Mhmm.
Lots of times. And, yeah, we experienced that firsthand. Kate and I both left that appointment. We're not criers, and we have been since this since diagnosis, but we weren't before that. And we've just both left there crying like, how can we trust this person when she doesn't even...
Like, she doesn't even know we're pumped. She doesn't even know what's going on. And and the only thing that came out of that whole appointment was that she wanted us to go to a pump class. And this pump that we're already making all the changes, and we know what we're doing, she doesn't know what she's doing.
She's like, could you take notes and bring them back to me, please?
Right. Exactly. So I had some doctor friends. I called them. They got...
They said there's this pediatric nurse practitioner. She's amazing. She's actually in the group, and she's the one who told me about your group. So they said, you you go to Lisa. She is absolutely amazing.
So they got... We left. We were, I mean, it was, an hour and a half away. We drove straight there, and she got us in immediately. And it was, like, coming home.
It was kinda like another Olivia, very much... I mean, just fantastic. So that that... She has been great. So we've never even seen a doctor.
Like, she's only seen the nurse practitioner.
Mhmm.
And now she's waiting to... We're on a waiting list to get into. She's 22 and out of college and all that stuff. So we're actually waiting on the adult endo. She goes in November.
But anyway, so...
We have... Okay. So... We have the moment coming. Arden just made an appointment with a new endocrinologist because ours...
I I I haven't said this in a while, but it deserves to be said again. Very, very rudely decided to prioritize her own life over ours. And she and she retired and she retired. I couldn't believe it. I'm still I'm still...
Lisa actually left. She works for a pump company now too, and it's the same thing. But she was 22, like, it's time anyway.
That's fine. I literally tried to talk my lady into divorcing her husband because he because he was moving for this amazing job opportunity. I was like, you've been married for so long. You must be sick of him. Why don't you stay here and help us?
She's like, I'm gonna leave. And I was like, alright. But we we we think we have a line on somebody, and we're gonna go. But I don't know how it's gonna be. Right.
You know what mean? Like, what if I get in there? And they're like, what? What's this newfangled thing you got on you here? And they're like, oh my
Lisa always said, I'm just Kate's insulin dealer. I don't need... She's like, she's amazing. All the stuff she does is amazing. We don't...
That's all I... That's all you guys need me for. You're... I'm her insulin dealer. And I don't know.
Just her whole attitude, and Kate, like, hates doctors for good reason. Like, she's been to a million all her life, and Lisa was one that she actually didn't mind going to.
Oh, that's good.
So I'm hoping her new one is
Yeah.
Is good too.
Well, good luck. Okay. Next... Go ahead.
Our next trauma was, you know, going away to college at two months. Crazy, terrifying. I happened to meet another mom in a in a in a college transition group. Her kid was going to the same tiny little private Christian college that my girl was going to. He was gonna be a freshman.
What colleges will and won't do1:09:26
He's... He is 12 years in. He was diagnosed at seven, so I connect with this mom. It's gonna be okay. She's gonna be okay.
We go away to college. I can't believe you're not allowed to ask anybody to follow your kid or to help out or anything. Such a shocker. Like, what do you mean? My kid's going away where they know nobody, and they're gonna live hours away from home, and they're not...
Like, you're not supposed to ask an RA to follow numbers, and you're not supposed... Or to get a Sugarmate text or any... Like, just completely blown away that if we see your kid having an emergency, we'll call 911. And I'm like, well, her nasal spray is right here. Like, it's gonna
be taped
to her back. The r
a is just a crackhead kid too who, like, know Right.
Needs couple extra bucks. And, actually, her r a, she had already asked before... My girl's a rule follower, but it was before she knew that she wasn't supposed to. And the girl is already like, oh, I'd love to follow numbers. And she she actually did, and she was fantastic.
Yeah. And we didn't ever need her. But I just was so shocked at, you know, we'll call we'll call 911, and that's all. And that's, you know, like majority of schools. That's what they do.
They'll they'll call 911, and, you get an EMT that's... Or at a high enough level that they can, you know, administer glucagon because so many
That's all just
are at those That's
like lower
level states.
Is protecting against liability. That's all.
Oh, I know. Oh, I know. For sure. So... Okay.
So then six months in... Or six weeks into school, this mom that I'd connected with, I've been texting. She's like the only mom I know is at the school. She's helped me a ton. Her kid dies of a low on my daughter's college campus the other freshman....
Hell did you just drop on me? Wait. What? Yeah. Yes.
Are you serious?
I am serious. So hello trauma. We're back in the thick of it. Right? Like, she's...
They lived down in Nashville. She's driving up to this... My... To the school in Indiana, and, she's texting me and... Yeah.
Uh-huh. He died of a low in his bunk.
That's insane.
Jeez. In the middle of the day. Yeah. He's an athlete. He's...
And it's like if somebody on that campus... Like, she's getting alarms five hours away. Mhmm. What's... What good is that?
You know? Wow. Like, what good is that? She call... She does everything she's supposed to do.
She calls and campus security gets there in time, and, actually, they're yelling out his name as they're coming in to do a well check. And type one, an older kiddo down the hall, hears him, comes running because he knows he's diabetic and, like, what... What's going on? And they are able to get a pulse back. But...
I mean, that's how, like, that's how close he was to being able to be saved, but he became an own... Organ donor.
That's ins... Oh, it's terrible.
Insane. Yeah. Insane. I mean, just traumatic and heartbreak and and all the why us? Like, my girl's been diagnosed at this point three months.
This kid's 12 years. He handles it... You know, he's on a pint... Pump. He handles it beautifully.
He's a college athlete. Like, he knows what he's doing.
Probably just got too active, came back and fell asleep or something like that. You know, something so simple. Ugh.
Crazy. Yeah. Crazy. So a year after his death, I started a group online. I call it ACT on college campuses, like advocating change for type one diabetes on college campuses.
Got a few thousand in there. Got some great people, Jody and Roz, working alongside of me. Like, we can't get anywhere. Everything is liability. Like, you cannot.
I just don't understand it how you expect these freshmen to go away to college knowing no one without any support. Like, get even... There's so many great kids that would love to volunteer. My girl's school came around her in the other diabetics on campus, like like nobody's business. Like, my girl had so many people following her, getting Sugarmate text, everybody wanting to be...
After after he... After Connor passed away, they wanted they wanted to support her, which is awesome, but it just tells me, like, these kids, they would have done this before. Mhmm. Like, they would do... People are awesome.
College kids are... They're awesome. They're they're just at such a great age, I feel like, to learn about type one diabetes and to learn, hey. You could help save a life by knowing how to do this nasal spray or by... You know, like, I don't know.
I just wish that there was something we could do for these freshmen before they build their own community. Six weeks in, you know, you don't you don't know anybody well enough to ask, hey. Would you follow me? Like, it's just awkward at that age. They wanna be typical.
You don't know if they're gonna be, like, valuable in the moment and things like that. Like, Arden had, you know, three, like, lifelong terrific friends. And, you know, after her high school prom, Arden had a seizure. And the... All the girls were here together.
We weren't here. It's a story I've told before. But, like, point is is that, like, you know, I was able to wake up those other girls in the middle of it and it was kind of fascinating. There were three of them and one of them was the action taker. And one of them kinda froze, and one of them wasn't as helpful as I would have imagined they would have been.
It was just kind of interesting to see, like, what happens when the rubber meets the road kind of situation. Right? So you don't really know who's who. And not... I guess not...
Unironically, the girl who reacted the best eventually went to college is becoming an RN.
Oh,
wow. But point is is that, like... You know what I mean? Like, you you can set up delegates when when when stuff goes wrong, you don't know... You know what they say?
Like, when the bullets start flying, then you find out who's who. Right? Like... So... And you don't know who that is ahead of
time. Right. But... But we can't even get those...
Oh, no. You're not even... No. Like... And...
With liability... Even though... Even if they have nothing to do with it, and they just ask, would you be willing to volunteer? You know, like, that puts them at liability. I hate I hate that word so much.
Yeah. Well, because at some point, some person's gonna have a poor outcome and then go, well,
who
who can I blame for this?
Right.
You know? And then that's... That's what they're gonna avoid. So...
So we've created a lot of awareness. Like, we've definitely been in touch with, like, the National EMS. Of course, they can't make a decision on letting, all levels of EMTs be trained in glucagon because that's a state decision, but they have a scope of practice that we have petitioned to get put in, that glucagon be trained at all levels. We've we've talked with Red Cross. We we...
Baqsimi was great. Like, they they would love to... They would have loved to have worked with us if we could have ever, like, gotten somewhere with this. We... They had us send a representative from our group down to Friends for Life in June '24.
Like, I mean, we've got we've got a lot of awareness, but everything is just liability, liability, liability, and it's
And it got changed. It's not gonna change anytime soon.
So I know.
Yeah.
Those poor freshmen, though, just for, you know, a couple months. Gosh.
Well, you... Till they get their community. You know, it's funny because within your story, the point is made. Right? Like, you're you're...
Somebody says, oh, she's 18. Like, I have to talk to her now. Like, she's 18. She didn't know what she's doing.
Right.
You you you know what I mean? Like... And they'll say that then. Well, they're they're at school. They're 18.
They know what they're doing. I'm like, no. They don't. You're out of your mind. Like, you know, do you have any idea how many times my...
My daughter's 22 now. Half the time what I get from her is, dad, I'm an adult. I'm an adult. Till something really gets sideways. She's like, daddy?
And I'm like, yeah. Yeah. Okay. Because she's still she's still young. I'm not saying she's not out learning or growing or that she's not capable.
But once in a while, in these really tough situations, you might need somebody to turn to. And, you know, when you turn and no one's there, it can be over... Again, you don't know who you are till the bullets start flying. So Right. Like, you know, some kids, you know, get it together faster, some slower, some need help, some never do.
I I don't know. To blanket just say, well, they're 18. They're at school now. They're adults is such a cop out that every college gets behind. And not just about health stuff, by the way.
They do it about everything. I'd like to know my kids' grades. I'm not allowed to tell you that. Yeah. I mean, I'm paying for it.
You you know what mean? Like Right. What do you mean? It's all just so that they just wanna stay out of any kind of legal entanglements about anything. And I don't know that I blame them.
I just... It's frustrating on this side of it.
I know. It it... It's like even even on our college campus where they really did want to help and whatever, and we're like, oh, we would sign whatever liability for us. Like, we're... You know, it just...
No. You... They just... They can't.
Yeah.
Or their lawyers don't let them or whatever. You know what I mean? It's it's just... No. It's just liability and
What else what else you got? Also, we're
gonna have put
we're gonna have to put a warning in this one. I don't usually I don't usually do that. Sorry. You know, you just drop that like a...
I know. I know. Well, I thought we'd get to that way sooner, but then
we ended up talking about our diagnosis way longer than I thought. Oh, you're chatty as hell, Julie. I don't know if you realize that or not. I love... By the way, I would love...
The
one on one, I'm great. Don't put me in front of a group, which I think I was feeling before. So I was like, ah, because it's... How many people are gonna be listening? But...
I'm introverted.... Someone.
I am. Anybody who knows me knows how introverted
I am. You've made that up. Alright.
Go ahead. Keep going.... Trauma. I had a girlfriend who was a therapist and is like, let me sit with you in your grief, and she was amazing. And she did exactly that, and I would go and cry and all the stuff.
And she would help me put it all back together. And then the other way that really helped me with my trauma is helping people in your group. People like Andrew who first brought it up, he kept saying to me, I need to be on the podcast, and he talked... He he talked to you about my nerdy math and helping his his daughter.
Helping people she has never met1:19:31
And
Fatima from Bahrain, like, she's a good friend of mine now, which is just kinda crazy, but I helped her son. And I've helped just a bunch of people get their settings dialed in on o p five and auto because it's what I know. Do I know manual? Nope. Do I know any other pump?
Nope. But if you're on o p five and auto, like, I figured out how... My daughter doesn't wanna think about diabetes. She doesn't wanna look at numbers. She doesn't wanna babysit numbers.
Mhmm. So we had to get it all dialed in. So her, carb ratios are, you know, to the nearest decimal point, which nobody ever knows that you can do decimal points.
Mhmm.
And that's always the biggest thing I think they take away. But, I follow... I followed, I don't even know, countless people. Not that I've ever asked anybody, but some people will be like, can you follow me for a little while and help me, like, figure out where I need to make adjustments? Or they just send me screenshots, or I'm following another girl.
Never met her in person. Right now, I've
been following her for a year and a
half trying to help her get her stuff. You know?
Truly, that's lovely.
That's my that's my way of healing. Right? Like, I'm giving back and and wanting to wanting to help in in that way. And...
I'm gonna take credit for that, by the way. I I mean, I made the group. I did...
You did make the group.
Yeah. No. No. I... It's your work.
Yeah. It's your work, but I'll take credit for it.
You take credit for it.
And then
the other thing about the group, though, that is, like, I met a friend who was going through the exact same thing. So Kate was in June. He was in November. Both of them were freshmen in college. And I met her in December in the group, and she...
I call her Albuquerque Amy. She lives down New Mexico. I'm in Michigan. Like, there's so many reasons why our friendship shouldn't work, but she's still the person four years later that I text most. Is it about diabetes most of the time?
Nope. Not anymore.
We have friends.
Yeah. It is about diabetes, you better believe she's the first person I go to. And just having that community of people in your group that you... That understand where you're coming... Like, they truly get it.
Yeah.
It's... And if you can talk one on one and find one on one somebody, that... Like, that has been just huge for me in my in my healing.
We struggle with this, like, managing the group. I do. And I I hope the people who help me are listening to this right now because we don't want people to DM each other because because of scamming. Mhmm. But if that wasn't a thing to be concerned about, I wouldn't care about that.
I mean, a lifeline.
Yeah.
A lifeline. Yeah. I don't know what I would have done without her without... And I knew that. And I'm not a rule breaker ever, But I I I knew that was your rule, and I still DM'd her.
And I and I, by the way......
Go through the same thing.
I'm not mad. Like, do know what I mean? Like, I... Listen. I delete things a lot that are for rules that as I'm deleting them secret time, I don't actually care about.
Yeah. It's just... It's a bigger picture thing. It's almost like... I don't know.
Do you ever you ever seen this?...
Can't match everybody up.
Though. I know.
I know.... Be such a huge thing for people. If if there was nothing else I got out of your group, having her
amazing.... Like a diabetes Tinder thing where you could meet friends?
Yes. Exactly. If if you're the diabetic, you meet another diabetic. If you're the mom of a... I mean...
Alright. I'm gonna tell you something. I have no idea if this is doable, but let me put it on my long term goals list. I'm just gonna write Tinder
for for sure. Like, if I had not met her, I don't know. I have no idea. I'd be in my grief still for sure.
I'd be... Because I don't... There's gotta be a way to take it, like, out of there because they... You don't want people getting scammed. Like, look.
In the end, it's not my fault. If you get scammed on Facebook, it's got nothing to do with me. But I don't wanna I don't wanna be the one who makes it easy for people.
Right.
You know what I mean? So you have a rule. You can't DM people. Like, you have to, like, respect people's privacy, like, that kind of stuff. Having said that, I see people being helped all the time and making friends like this, and I'm happy about it.
It's the same thing when, like, people are like, you know, hey. I have some insulin I wanna give to somebody, and I have to go, I'm sorry. Facebook doesn't allow that. And then I take it out, but, like, meanwhile, I'm oh god. I hope you find somebody to give that
insulin to. I hope that somebody gives it to you. Yeah.
Don't... Like, I wouldn't pass... I couldn't get... You know, when people start going, like, I wanna sell my stuff for something, I'm like, you definitely can't do that. Right.
But, you know, there's there's a lot of value in there. So you don't look the other way, but sometimes you just slow walk deleting something. You know what I mean?
Like, right.
I'll delete that in an hour. You you know what I mean? Like like
Make sure they get the help they need, and then we're getting rid of that
because it's against the
rules. Rules.
Right. You know, like that kind of thing. I'm much more worried, be perfectly honest, with something called follow farming that we definitely don't want to to let happen where people are trying to start their own digital kingdom and they think, oh, let me let me come steal these people out of here. Like, you know... Yeah.
So that's a real... And not because I don't... I'm scared to lose the people. That's not why. It's because most of those people will then monetize the people that they take out of there or something.
Actually, side note, but I actually had that happen. A bigger a bigger group that if I said the name, you would know them. They... When I first started the group for college campuses, they got in contact with me, and I thought it was great. It's a bigger name.
They're gonna help me out. No. They they wanted my people, and they wanted me to advertise. It was really a bizarre. It was a very bizarre conversation.
I went into the Zoom meeting super excited and came away like, what just happened? It was so weird.
I... That you just said there was a... So I... When you said if I said the name, I'd know it, I don't know that that's true. I pay very little attention to what's going on in the diabetes community, very much very much on purpose.
But at the same time, to hear you say there was a meeting, and then when you got there, what you learned was they were trying to grow their Facebook group off your ass, that part doesn't surprise me at all. Everyone is a scumbag.
A... But it's like a well known organization.
I don't care.
Like, I was just shocked. I was shocked.
People...
But that... Then I learned early, like, you just have to be careful.
I will not go down this rabbit hole today. Okay? But the the desperation that social media is causing in people is the reason that I need more clicks. I need more followers. I need more people.
Like, this thing is rampant. It's... I... I'll I'll say it again and again, and I I swear to you, I am being a 100% honest with you. I do not want your money.
I am not trying to sell anything to you. You wanna come on the cruise? Come on the cruise. Cruise doesn't make any money for me. It's a...
It's barely a breakeven, to be perfectly honest with you. Okay? Like... But I... That's a thing that I think is nice for people that can afford it that want to do it.
It is not a thing that enriches me. And nothing that I pay my electric bill with or put money in my savings account with or anything else comes from the people listening to this podcast or the people in that group. I am very proud of that. I do not I I will fight this as long as I can the way this... The way the Internet works right now.
I will fight against it for as long as I can. Everyone else has pinched their nose and dove in with two feet. And you are just something they are gonna they are gonna get together in their group so they can tell somebody we have this many people. We have this many clicks. Give me money.
So you're being sold to everybody. Just just so you know. It's a really... It's a... And I
had people mad that we as parents were... Because it's a lot of... I have type one diabetics in there too and college students, but a lot of parents wanting to do... You know? And they...
The kids need to be the one to do it. But, you know, and there's groups out there for college kids, and there are, but I can... I can't tell you anybody that I've talked to personally who were... Whose kid would join one of those groups. My daughter certainly wouldn't.
No. The She wants
to be normal. The kids
need to do it. The... Listen. Everybody's different. The way people do things is different.
Don't... This running around telling everybody, well, it should be like this. It should be like that. Everyone says the opposite of whatever they see. I saw a woman the other day say, I'm so excited.
My... You know, there's a post about Dexcom g seven. I got a bunch of people together talking about Dexcom g seven and g eight coming out. This woman's like, I'm... I love g seven.
It's always within 20 points for me. And then it doesn't take five seconds for some guy to go, that's horrible. 20 points off. And I'm like, how do you know we're meters right? Like like, what are you saying?
Like, don't always... The the... Do I wish the CGMs were perfect? I do. They're little plastic things.
They're not $20,000 meters in the hospital. Okay? Like, they're little plastic things that's... That are reading the interstitial fluid under your skin. Just be happy.
Okay? Like, it it works as well.
Saves you some pokes. Right?
Like, it saves you some pokes. But my point is is that whatever you say positive, someone's gonna say the opposite negative.
Right. For sure.
And if the answer is kids need help when they go to college, then someone's gonna go, you need to learn how to do this on your own. If you said, you need to learn how to do this on your own, somebody would say, kids need help when they go to college. Right. For sure. Everyone's just wants to take the thing they think they know is true and then disagree with anybody who's not saying it.
Like, I understand how it all works. But, like...
Yeah. And like I said before, I've had people... You know, when I talk about my daughter going on a pump on day four, oh, she should have been MDI for a while first. It's like, oh my gosh.
Yeah. You you did the opposite of what I did, so it's wrong.
Right.
Yeah. Or I have a problem with something. You're definitely gonna have a problem with it too. That's not necessarily true, by the way. Right.
Yeah. There's a difference between sharing your experience and wanting everybody to believe that your experience is a reality for everybody, which is not nearly the case. Alright. Anything else on this list? Because we're getting a little long here.
One last thing. I'm just gonna talk about my amazing daughter. So she traveled to Greece and Italy one and a half years after diagnosis with a college class and rocked it. We learned quickly that foods hit very different, and and their sugars aren't our sugars. And so there was a learning curve there, but she did so good, and she was only 0.5 in.
Good for her.
And then she went, summer of, '25. So last summer, she went, on an eighteen day engineering mission to Kenya, with some other engineering students, and totally rocked it. And she... And now she graduated in May. She's a mechanical engineer.
She's in the aerospace in... Industry. She got her dream job. She is a rock star. Her last couple years...
I mean, her a one c's been... I know that that doesn't have to mean anything, but her a one c's 5.0 to 5.3 the last couple of years and ninety five to 96% in range. I mean, she's, like, she's just a complete rock star, and I'm so proud of her. So...
Well, first of all, kudos to her and you for raising her, and I'm sure that husband did something, but it doesn't sound like much. And and... But but Omnipod five, FIASP in Omnipod five, a five a one c without pre bolusing?
Yep. Never once in her little life. Even when she could, and I see her sometimes that they're like, dude, the food's on your plate. Just do it, but she won't
until she starts me two things. Does she have a certain way of eating? Is this a very low carb lifestyle she's having?
Not at all. It's absolutely everything.
What's the secret, Julie?
The secret is dialing in those carb ratios. Her carb rate... So we use four different ones. They re... They range from...
Yes. She's resistant. They range from 2.2 to four are her carb ratios. So breakfast is 3.5. Her lunch is 2.2.
Her lunch is her most resistant time. You
said she's a small... Like, a smaller person. Right? You said? Yeah.
Uh-huh. May I say, again, not a doctor, not advice. I think GLP would cut her insulin needs down significantly.
Yeah. I think so too. But how in the world are we gonna ever get
her out of the bus?... Zip ties back out from Alaska. Bang. You hit her in the ass with it. Boom.
Just like that. I think that's illegal. But, I mean...
Will she ever even... I don't know if he'll get a doctor that would prescribe it for her. Oh, please. You can
get that per... That... Just ask for a dual diagnosis in type one diabetes insulin resistance.
Yeah. Hopefully, her new... We don't know this new doctor. Hopefully, she'll be great about it. I have wondered about that.
I think...... Not with the car brace... That car brace tells me everything I need to know.
I know. Yeah. Yeah. Yeah. I know.
Oh.
I know. But she still has
that a one c. Right? Like, so that's...
That's awesome. She's... Are you kidding me? Yeah. Fantastic.
She does great. Her graphs are amazing. She has great control, and and she's just... She doesn't wanna look at numbers. She doesn't wanna focus on it, but she knows things.
Like, if she hears her pump click three times, she knows she's getting a little more basal than usual. So she goes in because she's very, very bolus heavy. So she will go in and
Take a look.
Correct whatever needs to, yeah, whatever needs to be because there's... But she doesn't... Otherwise, she waits for her alarms at one eighty and seventy. Like, she doesn't look at it. But that's why we had to have those, the ratios dialed in so much.
So that's what I
help people with.
Does not sound like she'd be interested, but if she ever wants to come on and be on the podcast, I'd be interested in talking to her. And probably not about the diabetes management stuff, but just the other stuff. And, second thing is you're awesome for knowing how to do that for helping other people. You're awesome for sharing it here. So is what you're telling me, it's all settings and understanding the impact of your food?
It's... Yeah. It's all carb ratios. That's all it is. It's just carb ratios and auto.
We only run-in auto, never once flip it to manual. She doesn't wanna think about it. She doesn't wanna deal with it. She doesn't want to have anything to do with it. So I've helped set her up for success to not have to think about it.
Settings. Settings. Settings. People can listen or they can't. It's fine with me, but, it's...
Most of this is settings. So Yeah. Yeah. Okay. Well, I mean, also, Omnibod must be thrilled right now.
They're probably like, oh my god. Okay. All we hear from people is complaining.
Listen. If they wanna pay me, they can pay me. You know how people I've have?
Every pump company just hears complaints, by the way. I I shouldn't put it right on them. They don't hear any of the good stuff. They only hear the, like, it doesn't work. I...
I'm
That's probably true. I've never told them how amazing it works for her.
Yeah. Hello? I just wanted to call and let you know how great everything's going. Right. Yeah.
Things don't work that way. Alright. So I'm gonna say goodbye. This was awesome. You were excellent.
I have a question to ask you afterwards. Okay. But I'm gonna do this really fun thing right here. I'm gonna say, tell me the name of the Facebook group that did that to you. Today's show is sponsored by Tandem Diabetes Care, the Eversense three sixty five, and Touched by Type one, who you can learn more about on Facebook, Instagram, and at touchedbytype1.org.
Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. I'd like to thank the Eversense three sixty five for sponsoring this episode of the juice box podcast. And remind you, if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM. Eversense c g m dot com slash juice box.
One year, one c g m. If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one.
You can start your journey informed and empowered with the juice box podcast. The bold beginning series and all collections in the juice box podcast are available in your audio app and at juiceboxpodcast.com up in the menu. Thank you so much for listening. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcast, please do that now. Just hitting follow or subscribe really helps the show.
And if you'd like to go a little further and leave a review in Apple Podcasts, that would be fantastic. But most of all, sharing the Juice Box Podcast with someone you know or someone you think can be helped by it, that's the biggest thing you can do for the show. I'll be back very soon with the next episode, so don't forget to check your apps.
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