#1899 Lightning Doesn't Strike Twice
Lightning Doesn't Strike Twice
Three of Daphne's four kids have type one diabetes — odds of one in 6.8 million. A Maine mom on back-to-back diagnoses, looping three kids, marriage, and refusing to shrink her family's life.
Jump to a moment
- Multiple kids with type one isn’t purely random. Northern-European ancestry often travels with other autoimmune conditions — celiac, thyroid disease — and Daphne’s family fit the pattern. If T1D runs in your family, ask your care team about antibody screening (like TrialNet) for siblings.
- All three of Daphne’s kids use an automated insulin delivery system (“looping”). She notes the ADA now supports patients using automated algorithms — when her Maine endo wouldn’t, the family moved care to Boston Children’s. If your practice won’t support your setup, it’s reasonable to ask why or to seek one that will.
- Medical parenting carries a real emotional load. Daphne is candid about postpartum depression that needed serious treatment and about burnout being part of the picture. If you’re struggling, tell your doctor — support exists, and asking for it is not a failure.
- The household’s one firm rule: never blame your partner for anything diabetes-related. With the divorce rate for families of chronically ill children often cited near two-in-three, Daphne treats protecting the marriage as its own kind of management.
- Joy is a practice, not a reward you earn later. A packed “grab bag” by the door, a spare pod in the car, a pre-bolus before the meal — small, boring systems are exactly what let this family sail the Caribbean instead of staying home. Build the routine, then go live.
- US Med — Episode sponsor — CGMs, pumps, and diabetes supplies delivered. usmed.com/juicebox or (888) 721-1514.
- Eversense 365 CGM — Episode sponsor — implantable CGM with a one-year sensor. eversensecgm.com/juicebox.
- TrialNet — Free type 1 antibody screening for relatives of people with T1D — the sibling-screening question Daphne raises.
- Loop / Automated Insulin Delivery — Background on the DIY/automated looping the family runs across all three kids.
- Baqsimi (nasal glucagon) — Nasal-spray glucagon for severe lows like the one Daphne describes at camp.
- Postpartum Support International — Helpline and support for postpartum depression and anxiety. Call or text the PSI HelpLine at 1-800-944-4773.
- Juicebox Private Facebook Group — Community for anyone impacted by diabetes — type 1, type 2, gestational, and loved ones.
- Defining Diabetes series — 60+ short episodes decoding diabetes terms — bolus, basal, insulin sensitivity, and the rest.
- Bold Beginnings series — The newly-diagnosed starter series — also available in ASL.
Every word of the conversation
Welcome Back0:00
Hello, friends, and welcome back to another episode of the Juice Box podcast. My grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common?
They're all available at juiceboxpodcast.com up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you at juiceboxpodcast.com. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. If you're looking for community around type one diabetes, check out the Juice Box podcast private Facebook group.
Juice Box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. Today's podcast is sponsored by US Med, usmed.com/juicebox.
You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more. Usmed.com/juicebox or call (888) 721-1514. The show you're about to listen to is sponsored by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com/juicebox.
Three of Four2:09
Okay. Hi. I'm Daphne. I'm a mother of four, and three of my kids have type one diabetes.
Goddamn, Daphne. Way to start strong. Jeez.
Yeah. That's a huck.
Oh, kidding. Three of four?
What's the
what's the age breakdown?
Yeah. We've got an 11 year old who does not have type one diabetes, so we can move on. So lucky
and then the other three.
Yep. And then we've got an almost 10 year old with type one, an eight year old with type one, and a three and a half year old also with type one.
11, 10, 8, 3.
Yep.
Mormon?
Yeah. Just, there's some Irish Catholic DNA.
Oh, oh, I gotcha. Yeah.
Not practicing. Certainly lapsed.
It's in the blood. It's in the blood, you're saying.
Yeah. I'm I'm saying, you know, things get a little wild. Was And we had three kids in three years.
So Is the 10 year old what they call an Irish twin?
They are 18 apart. The first three were all born in three years. And so what's, like, pretty wild about our diabetes story is that we had a three year old, a 22 old, and a 10 old when the first kid was diagnosed. He was 22 old.
Oh my god.
“William Is Just Too Sweet”3:18
And, like, I literally had gone back to work bringing my baby with me that day, and I got home, and our nanny, who we adored, who'd been with us for a while, was like, look, he's been really thirsty. And she didn't say it, you know, she wasn't like, you need to you need to take him to the doctor, but she did kind of flag he's been really thirsty. He's been peeing a lot. I was like, oh my god. Yes.
He's been peeing through his diapers so much. This is so weird. And that night, I put this the symptoms in. This was 2018, but I remember it, like, it was a minute ago.
I put
symptoms into Google, and I was like, it wasn't like, oh, your kid has a cold or diabetes. It was like, oh, your kid has type one diabetes.
Yeah. But there was no ambivalence. It wasn't like, you know, it could possibly be this or this. It was yeah. Like Oh.
God. It was so clear. You know? It was just the Internet just told me my kid had type one. And I my husband and I were sleeping in separate rooms because I had a 10 old, and I, like, went and crawled into bed, and I was like, I think William has type one diabetes.
And he was like, I know. I think so too.
Oh, no. He you hadn't talked about it previous to that?
We had never even it had never even crossed our radar. No one in our families has type one. You know, we've got some hypothyroidism here and there, some asthma, whatever, but nothing like type one. We I had had one friend in college whose sister had it. That was the only thing.
And another, like, kind of peripheral friend who had type one since she was 17. But other than that, I had no idea what it was.
Anthony, I'm gonna be a bummer for a second because we're already having a good time. That made me cry. Oh. I it it put me right back.
Yeah. Put it
put me in a car at a traffic light, like, two miles from a hospital. Oh. Yes. Sorry. Yes.
No. Knocked me knocked me right over.
Instructions. Right? Like Yeah. We go to the doctor. We I emailed our pediatrician.
She got us in at noon the next day. This little boy, William, the first kid diagnosed as the sweetest human on the planet, and already was the sweetest human. And and he he had, like, you know, he'd been peeing so much. And then, of course, we get to the doctors. He's not peeing at all.
We put a pee bag on him because he's not potty trained. He finally pees. We're all laughing, like, oh, this is such this is so ridiculous. Like, you know, we have three kids. Why are we so anxious?
She walked out of the room with the pee. She came back in, and she looked at us, and she said, you know, William is just too sweet.
Aw.
And we all just burst into tears.
Yeah.
And that was the moment that the world just everything shifted.
No kidding.
And you know how that feels. Right?
It's when you think, I know how those ladies drive those kids into lakes. Yeah. Yeah. Kids were going for a ride. Put your seat belt on real tight.
Okay? 100%. I tried. It didn't work out. Yeah.
I'm gonna give up. You don't mind. Right?
Yeah. Sorry, guys. Okay.
How old were you at that point?
Oh my gosh. I was, like, 31. And my husband and I were both lawyers, and he was working a million hours a
week. Yeah.
And I was, like, staying afloat part time. Anyway, so so we went yeah. So so and then so what I mean about the car ride is then she was like, you put that baby in the car and you drive straight to the ER, and you don't stop and, know, like, you just get to the ER. I don't
care if you see I don't I don't care if you see, an In N Out burger on the way or something.
Right. Yes. Yeah. The police try and pull you over. Don't give a shit.
Yeah.
Get to the ER.
Drive drive. You'll let them know what happened when you
come in. Right.
And they all pull up behind you with the lights on, and they're tasing they're tasing your husband.
Yeah. Exactly.
At least you're two lawyers. You'd love to get tased.
Oh my
god. What
a joy that would be. Yeah. Yeah. We've had some lucrative moments where people have gotten tased. Actually, that's been good for our careers.
So, yeah.
Yeah. Maybe try talking another second.
Right.
It makes someone go face down on the pavement.
That's exactly right.
Although, I mean, let's be honest. Just between you, I, and everyone listening, taser videos are fantastic.
Fantastic. Could watch them for hours. That and the boats where people are trying to get out of really rough inlets. I don't know if you're a boater. That shit is wild, and it feels like my life.
And I'm just like
There's that great I don't know how if you're old enough for this part of the Internet or not, but there's this great video where these people in their thirties or forties are on a boat, and they're just going along. And it's it's bouncing along, and then the boat catches a bounce that, like, it just knocks everyone in the frame into a different direction. It's maybe my favorite thing I've ever seen on the Internet next to the lady stomping grapes and falling on the news report.
Yeah. That's a real I have seen that one. That's a really good one.
That one's my favorite because it's the noise she makes when she hits the ground. Goes, like like you like like like it just hit her in the ribs and, like, straight through to her asshole. You know what I mean? Like, she's Anyway, let's talk about three of your kids having diabetes. Now Yeah.
So this is all happening, and you think to yourself, you know what we should do? We should have another baby.
Well, so no.
Okay.
I did not think that. No. That's such a good question. So we have these three little kids, and we kind of, like, adjust to the type one. You know, we only have one type one diabetic, and things start to feel a little manageable.
So then then I get this pretty pretty big job. I got my dream job. I was a federal public defender. I got the job. I started in November 2019.
And, you know, at that point, like, we have sixty six hours of childcare. We're both working full time. Life is, like, pretty clear about what it's gonna be. Yeah. And then COVID came.
The world shuts down. Our nanny can't come. We're both trying to work from home. Our our nanny who had been with us for, like, three and a half years and was our lifeline at that point, who who had been with us from the minute that William was diagnosed says, look. My husband wants to move to Florida for a job.
Mean, I first of all, moving to pandemic. Sorry, Carrie. But moving to Florida during the pandemic was a wild choice. But anyway, they moved to Florida. We're devastated.
We loved her. And as she's telling us about these plans, my husband we just bought this old boat. We bought it for, like, $15 on Craigslist, and my husband was fixing her up, and he was like, you know what we should do? We should sail to The Caribbean. We should go to The Bahamas for the winter.
And I was like, you're fucking crazy, dude. I just got my dream job. Like, what are you even talking about? But the courts were really low. Like, there weren't a lot of arrests happening.
Everything was by Zoom. My husband had just wrapped up a big case, so he was able to take a sabbatical. So we so we made this plan, and we went on this boat trip for eight months with our three kids. Only one had type one at that point.
No kidding.
And we we lived on the boat for eight months, and it was, like, the most unbelievable magical thing you can imagine. And also, was totally bonkers because we had a five year old,
a four year old, and a two and a year old. Oh, no. No. It's just, like, argument to make the stage take your kids from you. But I hear what you're saying.
Yeah.
Yeah. Yeah. There are more moments like that as this unfolds. So we go. We have this great time.
We get back, and it's now June 2021. And we kind of slip back into life. I'm working. Ben's working. Everything is kind of status quo.
And then we were on a
trip with some friends in January 2022, and I was like, oh, I feel very I feel very pregnant. There is something very wrong here. And I was pregnant, and it was a total surprise, which is not which is, like, not a fair I mean, my
It wasn't a total surprise. Like, you know how happened.
Be honest, I had three and three years. Like, it wasn't a total surprise. It was an
Hey, Daphne. You just disappeared. Did you hit your mute button by mistake? Daphne, you are gone gone, but oh, she's she's gone. She disconnected herself.
Speaking of total surprises, let's put the ads here. I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years though, because we began using US Med. You can too.
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That's what I'll do. The ads are gonna go right here. And then as soon as they're over, Daphne will be back. Okay? Alright.
Hey. I was getting ready to call the cops and send them to your
Oh my god.
Your location. You okay?
Man, I don't know what happened.
It's okay. Don't worry about it. It was hilarious. Actually, can I tell you it was perfect? Because it was right at the spot where we like to put the ads.
Just Thank god.
And you said and you said, well, it wasn't really a surprise. I'm gonna cut it right there and then put the ads in. Fantastic. Feels like you're producing, to be perfectly honest with you.
Oh, excellent.
So so you were not surprised because you're a the two of you were a baby making machine.
So Yeah. Right. Right. So we weren't surprised. But but Ben had long said, like, I I don't think we should have a fourth kid because what if someone else develops diabetes?
And everyone every doctor was like, that is are you still there?
I'm listening. That is good. Yeah. No. I By the way, I love your attitude.
You and I would get along great.
Yeah.
Yeah. You're like you were just like, that fucking phone shut off again? That what what a tone in your voice, and and you didn't even say a full word. I was like, oh, she and I would really get along. I love the complaint.
Oh. I can't even tell you.
Yeah. I know. I know. I kind of wanna talk about that at some point about, like, the complaints, like, just get you know, like, you just you gotta, at some point, turn the complaints off about the diabetes because holy you could just I could complain all day about it.
But so did you guys about it. Did you guys have a conversation about terminating the pregnancy?
No. No. No. Okay. Nope.
It was never and and not for, like, any reasons other than other than I had wanted a fourth baby. You know?
Mhmm.
And and Ben was kinda just like, okay, this is what we're gonna do. We're gonna have another one. We love having a lot of kids. It's fabulous. The kids are amazing, and we're just gonna do this.
And it did take me, like, six days to work up the courage to tell him, because I knew he was gonna be a little distressed. Yeah. And, like, my best friend's husbands knew before Ben did, and they would all, like, see him at pickup and, like, be avoiding making eye contact, you know, because he knew that I hadn't, like, gotten it together to tell him. So but his biggest hesitation was always when we would have the conversation about a fourth kid, but what if someone else gets diabetes? How do we give everyone what they need?
How do we pay for all of it? You know? Yeah. And more importantly, how do we give them the emotional time, energy, and love that is required?
Right. Are you about to tell me that your second gets diagnosed while you're pregnant?
I'm about to tell you that.
Oh, okay. I'm ready. Go ahead. 30 I'm ready.
Lightning Strikes Twice15:52
Six weeks pregnant, and we're on a boat trip. We're sailing just like a two week long trip, and the kid our our third child, Teddy, starts peeing the bed. Mhmm. And, you know, red flag, but okay, he's only four, like, whatever. We'll give it a little time.
And he had been having some behavioral issues, and we were sort of like, oh, and then we got home from that trip. It's August. I'm I'm either 35 or 36 pregnant, and, like, I have my baby shower on a Monday, and on a Wednesday, we put him to bed and he pees seven times in an hour. Nope. And I, you know and so I pricked his finger.
Yeah. And he was at 03:56.
Jesus. Where were you on this boat at this point?
No. At this point, we're home.
Okay.
Okay. And we just got on, like, a two week trip, and we get home. And my mother-in-law was here, and and we were sort of just having a visit with her. And I I pricked his finger at, like, 08:00 at night after he'd gone to sleep, and I let out, like, the most, you know, just like a keening wail of pain, like an animal. Right?
Like, a thirty six week pregnant, huge wail just, like, losing her shit.
And
I ran downstairs, and my husband knew before the words even came out of my mouth. And so that was that was number two.
Jeez.
And and and we had what was kind of wild about that diagnosis, and something I think is important for people who have multiple kids and one of them is type one, is that the doctors had said to us, like, five times over the past six months as we had gone in for some behavioral challenges to talk to the pediatrician, look, lightning doesn't strike twice. You know? There's no type one in your family. This is random. This is not what this is.
And and lightning does strike twice, it turns out.
Yeah. Okay.
And so so that time was, like, even more emotionally
Does this feel more targeted?
It felt like a fucking gut punch every minute of the day Yeah. For the first forty eight hours.
Like somebody was doing it to you now.
Yes. Right. But there and, and I do say this, that someone, a disgruntled client from my past in jail, must have a voodoo doll. You know? And just is like, oh, I think this year we'll just throw something else in there.
Yeah. Let's let's throw a pin in her eye in her eyeball this time. Ugh. So, anyway, Tati was diagnosed. I was thirty six weeks pregnant, and and Harry was born a month later.
Postpartum, and Finding Real Help18:24
Jeez. I did do you have postpartum by any chance with any of the kids?
I I so with Harry, I, developed it, like, three months in. And so he's the last baby. I'd never had it before. And I got so sick that I, I took a leave of absence from my job, and we ended up we couldn't find any help for postpartum depression. We live in Maine.
There was there was nothing here beyond, you know, here's a prescription for an SSRI, and we'll call and check on you in a couple days. And I was so sick that my friends had organized, like, they were sitting with me for an hour or every day. There was like a babysitting schedule for me
For you.
With my friends and my family. I was living at my parents with the baby. Ben was holding it down with the other three and his mom, and everyone was just trying to keep me between the navigational buoys until I could get some real help. And we found that help in Rhode Island, at Women and Infants, which is a a hospital down there where they have a partial hospitalization program for women with postpartum depression.
Oh, that's nice.
So I moved down there for a month, staying in various Marriott hotels, with the baby, and my dad would come down, or my parents, or my my best friend. And and then I did this, like, magical, truly magical drug where you get an infusion for sixty hours at a hospital. It's called Zulresso. And it lifted it lifted the curtain, and all of a sudden the world had color again, and I was I was myself. So was a wild experience.
A one time treatment drug?
It's a one time treatment drug. And then I was on, you know, I mean, I was on SSRIs and whatever for about a year after that. But I yeah. It was a it was a wild thing to have postpartum depression just with your fourth baby. Mhmm.
But I think a lot of it was was that now we had two kids with type one.
Yeah.
And it was so overwhelming. I was so lost in it, trying to figure out how I was gonna get everyone what they needed. And I was still trying to work, and and, you know, then I had to really call that. We had to we had to call that.
Hey. Zul ZULRESSO? Like
z ZULRESSO. Yeah. Z u l r e s s o.
Discontinued. They don't make it anymore. No
way.
IV medication for postpartum depression given as continuous sixty hour infusion is monitored. Metabolism. Important update. It's no longer commercially available in The US as of 01/01/2025. The FDA withdrew its approval effective April 14, at the company's request because the product was no longer marketed.
Oh, a newer related option is Zurzeevia, a generic Govit, an oral fourteen day treatment for postpartum depression. Wow. It's not ideal.
Well, that's probably more accessible to a lot of people. I mean, I think the only reason I could do it was that I had federal health insurance at that point.
Okay.
Because I think it it I think it was, like, a $70,000 treatment.
Oh my gosh. Mhmm. Jeez.
But I had really good health insurance, and I had saved up enough PTO that I was able to kind of still be on on the insurance.
Mhmm.
And I was hoping to go back to work. I loved what I did. It was it was truly my dream job, but it just wasn't in the cards at that point. So so that's so we're at January 2023, then it's April 2023. I'm not working.
I'm home. I'm feeling much better. And our our sweet dog who had we'd gotten during the pandemic and had gone on the trip with us and was just the cutest thing ever, was hit by a truck while our kids were outside waiting for the school bus.
Kathy, what in the hell?
So so that's the point where I really developed this theory about a voodoo doll.
God. Some guy's making toilet wine and putting a hex on me. Yeah. Yeah.
Serving forty five years. Yep. And he's like, well, my lawyer is a real shitty lawyer. And My god. Oh, it's terrible.
Hey. The dog I mean, when the dog goes, are you just like
Oh my god.
Okay. And by the way, dog didn't just die. Was hit by a car, and it was hit by a car in front of the kids
In front of the kids.
On their way
to school. Yes.
Did you still put him on the bus?
No. And no. One of them had already biked to school, and I was like, well, we'll tell Johnny when when Johnny gets home. And Ben was like, no, you fucking idiot. We'll pick the kid up.
I gotta tell you, when there's six of you and a dog, I I don't even know how you make one decent decision about anything, to be perfectly honest.
Yeah. Well, some would say we don't.
Are some of those people you and your husband?
Yeah. Yeah. No. We you know, we're fairly confident. Our parents are super skeptical of much of what we do.
The Third Time23:10
Mhmm. So anyway, so the dog dies, and then it's but like life life marches on. We've got the two diabetics. They're both in public school, and so we've got really good school nurses who are taking care of them. And and life kind of continued to, like, improve.
Like, it it felt manageable again. You you move through the the stages of grief, and you're back at, okay. Yeah. This is what life is. And then in January 2024, it was January 6, and our baby had been sick for a while.
He was 15 old. And I pricked his finger, and it was at one eighty three. And
Yeah. You don't I mean, after the second time, you don't have to mess around with waiting for him to wet through something. You're just like, oh, I see. I've seen this movie before.
Didn't like the ending then. Yeah. I like it now. Yeah.
Do you even have this I'm so interested. Is the reaction very different the third time? Like, you just throw your hands up?
Very different the third time.
Yeah.
Yep. Yeah. The third time, it was like, well, of course, you do. Of course, you have type one. And it was also like, you know, we we decided to go to the ER because our endocrinologist is sort of like, why don't you just come in even if it's just to like so that you can get a break from all the other kids for a second while you get your feet under you.
Just come in for the night to the children's hospital. And we got there, and of course, they couldn't find a vein, and there was a in the bed next to us, there was a total teenage breakdown happening with cops and Yeah. All sorts of stuff. And I'm, like, about to go over there to start representing her, you know. Like, that is, like, no.
No.
Like, this kid needs a lawyer. Hold on a second. Yeah. Yeah.
Exactly. I was like, this is the civil rights violation. Ben is like, no. You sit you sit your ass down. And and, and so we ended up not even spending the night.
We we threw a Dexcom on him, and we brought him home, and they're all looping.
Mhmm.
So we set up an iPhone, and we got him right on it. None of them honeymooned.
Right this right into it?
Right into it.
Yeah. They said I there's something somebody said to me recently I'd never considered or or heard. Like, the younger it happens, like, the fewer I guess, I don't even know how to put this guy. I don't wanna get it wrong, but I guess it's something to do with the amount of time you have to make beta cells to begin with. Or I don't even know how to put it exactly, but maybe I'm wrong.
So maybe somebody should Google it.
Well, but that kinda makes sense. Right? That, like like, if you don't have a lot of beta cells stored up, then they peter out more quickly or something.
I'm gonna have to dig into that a little bit because it just made so much sense to me when someone said it, but Yeah. I don't I don't know if I ever made sure that it was accurate or not. But I mean, neither here nor there. I mean, that's
just yeah. They have type one, and and they didn't honeymoon. And So And so yeah.
Translucent People & Family History26:02
I heard you I heard you say there's no type one in your family, but I'm gonna guess Irish, like, probably celiac and hypothyroidism.
That's exactly right.
Yeah. I mean, that's you the the very the translucent people, they don't do well with this stuff.
No. Yeah. Yeah. No. They don't.
No. They don't. And I blame my husband for that.
Well, why not? So Depression, anxiety?
Yep. Yeah. Yep. Okay. All around.
You got a couple of alcoholics?
We we we sure do.
Yeah. Yeah. Know what's going on. Hey. Any bipolar people in the extended family?
Really good question. A couple have been diagnosed.
Yeah. I'm good at this. Yeah. By the way, I've been doing this a while.
Yeah. Yeah. I know.
Yeah. No.
No. I've listened to your, clairvoyance before.
Thank you. Yeah. I mean, if an Irish person meets another Irish person, may I make a suggestion? Go meet a person with more melanin and try making a baby with them. That might help a little.
Okay? I mean and if one of you has got an autoimmune issue and the other one, like, even has allergies, that's a good reason to break up if you're gonna have kids. Yeah.
Yeah. You know what? We met when I was 23 and Ben was 25. So it was like, we didn't even know
Of course not.
What was up and what was down. Right?
Oh, I'm I'm I'm still not sure. I understand what's happening. But Yeah. Yeah. I I I I just know for sure that if you start putting those cocktails together, you end up with a with a zoomy little drink.
If you if you start putting those cocktails together, you end up with four kids under under seven. Yeah. You know? That's what you end up with.
I'll tell you what. That oldest kid must walk around like a cat in a room full of rocking chairs.
Oh my god. Yep. Yep.
There's a saying I've never used before in my entire life, but but I I am considering moving south, so I I'm trying to get ready. But but but no kidding. Like, that I mean, I I wanna ask, is your oldest did they come to you and said, hey. Is this gonna happen to me? Or
Yeah. We've talked about it. We've, we've pricked Johnny's finger a couple of times.
Mhmm.
We've all decided so far not to do trial net, or not yeah. That's what it's called. Right? Yeah. Yeah.
We've all decided so far not to do it. If if Johnny goes to, like, sleep boy camp or college, you know, and is out of my eyesight, then I will for sure do it.
Like, if that kid tries to leave here Yeah. We're gonna test his antibodies.
That's exactly right.
Wait. You know what's it I mean, though, how old is he now?
11.
I mean, I don't know. Like, I'm not saying it's more or less likely, but, I mean, for the way your family does it, it feels
Yeah. Like, the like, he's out of the the danger zone.
Yeah. I don't know. I mean, Jesus. Hey. You're not gonna have more kids.
Right?
I'm not. Okay. No. Alright. No.
I'm not. Nope. Nope. And as Ben says, if we did, it would be a diabetic boy. You know?
There's a seventy five percent chance.
That's what we do.
My gosh. We just went down. I just took the kids down to Boston Children's to start doing some genetic sequencing.
Okay. For
Well, that was sort of prompted by the two middle kids have these really large birth several really large birthmarks that are indicative of this other genetic disease called NF one. And and I don't know a lot about it. It has something to do with, like, something in your brain. There's there's a misfire where your brain doesn't tell your body not to produce benign tumors. And so if you have a certain number of these, this type of birthmark, you just get screened for it.
So that's kind of what got us in the door. But then really the genetic doctor was like, I don't think they have that, but what I think they do have is type one diabetes, and I'd really like to know why.
Oh, okay.
She's doing just a bunch of different of different tests to kind of see if there's if she can find a gene that's responsible. It's so wild to me how much doctors don't know about type one diabetes.
Not me. Not anymore. And I don't and don't blame the doctors either. I just think you know, what I what I really think is that we're only, I mean, slightly over a hundred years removed from, you know Yeah. Cowboys and and, you know Yep.
Doc Holliday being a real person. You you know what I mean? Like, I I just think I think things jump forward and we act like we know what we're doing. You know, we're like, oh, we made, we made the steam engine. Like, we're amazing.
And and and, you know, and we have a computer. We must know everything and blah blah blah. I don't boy, I think this is the infancy of humanity. And, you know, what we know fits in a thimble still. So Yeah.
You know, and not that, you know, I'm very happy about the way modern medicine is. I'm glad that I can get sick and go to a doctor or break my arm, go to somebody and they fix it. Like, trust me, I've I'd be a I'd be a shell of myself without without modern medicine. I'm I'm not even kidding. Like, if I sat here and started listing all the things I've had done over the years, like, I'd be lucky to be alive or even walking.
Yeah. You know? So it's great. You get to keep refacing the house. Like, every time the wind blows, you're like, oh, I can put up a new shutter.
I can put the roof back on, like, kind You of
know? Our kids are alive. Right? I mean, like Yeah. That's that's part of the mind fuck of type one diabetes as a parent Mhmm.
Is that, you know, you you shake yourself sometimes, and you're like, holy shit. There's so much to be grateful for because they have access to this stuff that's keeping them alive.
Oh, a 100 a hundred and some years ago, your story is you had four kids and three of them are dead. Yeah. Yeah. In in in short order. Like like
That's right.
Don't know. You you and and no IV get me off the get me out of the spiral drug.
Right.
Yeah. No. Right. Hey. There's that, there's a movie coming out on Netflix called The Last House maybe.
And Arden said, hey. Did you see this trailer for The Last House on Netflix? And I was like, no. She showed me the trailer. It's I don't know.
It's something about, like, I think there's some sort of an alien invasion, but everyone's locked in their house. They can't get out of their house. And everyone talks about, like, how you make food and blah blah blah. And my and, you know, we're all kinda standing around and Arden's boyfriend's there, and they're talking about everything. And Arden's like, well, that's not my problem.
Like, the food's not my problem. Like, how much insulin do I have is my problem. Yeah. And I was like, great. And then you and then she said she's like, but we do have, like she this actually happened at my house last night.
She goes, we do have all that GLP. And I and I said, I could I could cocktail you up with GLP and stretch that insulin out for a long time if I needed to. And I said I it was getting serious, and I said, I just want you to know that I that's how much I love you. I would get
I'll give up.
I would get fat again. Yes. But in the back of my head, I thought we won't have any food. I probably won't get that fat.
So yeah. It's not actually that big a sacrifice.
Yeah. Because it's not perfect. That's how I knew I loved her. I was like, oh, I guess I would give you my GOP. Okay.
Yeah. I hope she gave that appreciation it deserves.
Oh, I don't know that she can because she hasn't she's never she's lived
through She hasn't done it.
Yeah. Yeah. She hasn't lived through my life, but it was a it was a heavy lift for me.
Yeah. I went to go visit my my grandmother this week who's dying, and one of my aunts was there. My grandmother's blind, and she said, oh, Daphne's my most beautiful my most beautiful grandchild. You know, because I'm the first grandchild. And my aunt was like, I'm not quite sure why she said this, Judy, I love you.
But she said, well, dad told me
that she recently lost 50 pounds. I didn't know if she had 50 pounds to lose, but she did. And I was like, well, know, I had four babies. Like, I had some weight to lose. And my grandmother says, what?
You got fat? You know? She's literally she's lying there. She cannot hear. She cannot see.
And she's like, what? You've got fat? You know?
Have you ever heard the story of my, the end of my by the way, you are just a bundle of joy. You talk about death and blindness like it's joyful. Yeah. My, my wife's grandmother is in the hospital. She's in her last couple of days.
We go to visit her. She can barely see. I get through the doorway in the hospital, and she looks right up at me, and she goes, you got fat. First words. First words.
I was like, hi.
Did you get that GLP prescription the next day?
Oh, they didn't make it back then. But, if they made it when I was 10, I would have bought it now that I know what's going on. Yeah. Also, you see this, retrutatide that the Lily's gonna pump out next? Oh.
They're saying that not only do you not do you lose so you're still hungry apparently, but lose weight and don't lose muscle and something else. And I'm like, what magic is coming? You know what I mean?
That is a that is a miracle. Yeah. An actual miracle.
I I first of I think I'm gonna live forever now that GLPs have been invented. But but at the same time, like, I I can't wait to see what comes next. You'll see me. I'll pivot. I won't like, I'm a 100% I'm gonna I'm I'm not gonna stop till one of these makes me taller.
That's what I'm doing.
Well, I hope that there will be a juice box episode about that when you find that that, that hype.
Why This Show Isn’t on Video35:20
Well, I'm not I'm not giving up. Also, you gave me a lot of you said something so small to me before we started recording that you didn't know, but for me, it was just incredibly hopeful. Then we said we were gonna start talking about it, but then you went right into the hellscape that is your life. So it was it was hard to it was hard to pivot away, but let's take a break for half a second. You thanked me for the podcast not being on video.
Yeah. Yeah. Because all the podcasts are on video now, you know? And I just like, not only is that so wildly unfair to the people who are talking, but also I'm not interested in watching you speak while I'm cleaning. I just wanna hear it.
You know? I just wanna hear your voice, your dulcet tones podcast, you know, pod save America or whatever I've got going that day.
100%. I don't understand it all. And and and so if you're around it enough you know, I tried to say something to I was I was interviewing this girl the other day, and she's like, you know what I'm and she notices something about the world. Right? And I realized that she's 27.
This is the first time she's noticed it. Humanity has noticed this thing a thousand times already, like, generationally. Right? Right. It's her first time, and God bless her.
That's Yeah. But the same thing goes with podcasting. I've been doing this a long ass time. Okay? And about once every eighteen months, someone jumps up and goes, the new world of podcasting is video.
You gotta put your podcast on video. If you don't, you're gonna be left behind. Blah blah blah blah. And every lunatic runs out there and makes a a podcast, and no one watches them.
And Yeah.
And, like, and you're getting confused by the seven that people actually pay attention to. You're not gonna get hundreds of thousands of downloads on your podcast. Your YouTube you're even, like, around diabetes. Like, listen. If you're gonna make a YouTube video about diabetes and you're not leaning hard into technology and promising the future or yelling about a cure, no one's watching your damn video while you talk to somebody about their diabetes.
Okay? Right. Like, it just doesn't work that way.
Right.
Audio works great.
Right.
Yeah. It it's fantastic. And I appreciate it because I have I have persevered through that pressure probably six times, and it Yeah. And it was hard a couple of times to ignore because I really felt like, oh, if I don't do this, I'm making a, like, a a, you know, a deadly mistake for the show, but not the case.
I mean, I I think that as an audience member, it just it it also is like, you know, I I, for the ADHD brain, being able to just listen and not get distracted by what the person's wearing or what makeup shade they have on is really very helpful. Yeah. So I think it's a more effective form of communication.
I think it's more personal. It builds I mean, there's an intimacy to it. Yeah. You know, you don't you don't know what I look like. It doesn't matter.
I I'll tell you this. I don't really talk about this much, but I'm so glad not to know what the people look like who I'm interviewing because I'm not certain that I wouldn't jump to conclusions about them.
Yeah.
You know what I mean? And then just getting to talk to them, it it allows them to be, like, who they are without all the facade stuff. Yes. I think that's really.
Think so too. I I find that even so so I made this so I'm on Instagram, as many of us are, and I made this video about how our 11 year old stuck some toothpicks in a carpeted stairs this winter right after holiday season watching Home Alone 1,000,000 times, made kind of like a Home Alone style trap. And it wasn't it wasn't supposed to be for the nine year old, but the nine year old ran down the steps, got a toothpick stuck in his foot, pulled it out, and and says, okay. I got it out. It's out.
But he's in so much pain. He's not walking. Anyway, it's a whole saga that takes four months for an MRI to finally happen, and there's a two centimeter piece of toothpick stuck into the kid's cuboid bone in his foot.
Really? Ugh. Was it mint flavored? I hope not mint flavored.
Yeah. No. We would have found it sooner. Yeah. It would have smelled better.
No. Nope. It was just a regular old toothpick, but he couldn't walk, and we had been going to see a podiatrist. And she had done one surgery, thought she got the toothpick at whatever. Like, she thought maybe some fragments remained, she had pulled those out.
She was like, he's fine, and then he still wasn't walking, and it's April, Oh
my god.
There's it's a whole saga, but I made this video about it on Instagram, and it has gotten like and I thought, okay, I have 600 or 700 people who follow me. It's all friends and family. They're gonna see that. I'm gonna explain why William's been on crutches for six months, you know, whatever. Mhmm.
And then one it has, like, 1,800,000 views. So that's insane.
Yeah.
And the comments are wild. Oh, You
know, your
child's a psychopath, you're a terrible parent, all this stuff. And so I've been thinking a lot about, like, anonymity and intimacy in the age of podcasts Mhmm. Social media. And I've also been kind of like, I have some new followers, and so I've been kind of like, okay, I'll I'll I'll do some more Instagramming. And I find, and this relates back, I find that I'll just like be speaking to myself on the phone saying these like deeply intimate things, like about how isolating medical parenting is that I would never say if I were speaking to a room of 700 people.
Isn't that crazy? Yeah.
It's such a it's it changes the whole game to to be just to not be looking at the people that you're speaking to.
Yeah. No. I mean, it's it's it's helpful for you to and by the way, there's some level of craziness that allows people to do that. I've I I don't know if this is still true, but I I heard in the past when I was I was just writing a blog. It was a long time ago.
They said that I was I was trying to talk about why blogs don't get a lot of interaction, and I was told that it's, like, I guess, proven back then that only a very small percentage of society has whatever it takes in them to actually comment on something. Yeah. And it's a very small percentage of people who can bring themselves to do it even.
Yes.
You know?
Interact in any way.
Yeah. And so the people who are willing to to, like, initiate that, I think that number is even smaller. Probably doesn't seem like that, but when held up against the totality of, you know, of humanity, it not not many people Like, I have that feeling a lot when I'm making this. Like, I'm talking and there's part of me that's like, why am I saying this? Like like like, why don't I just go get a regular job?
Like, you you you know, and and but then I don't know. Like, first of all, a, I see how it helps people, and that's Yeah. Really invigorating. And then b, it makes me feel better to Yeah. To get get it off my chest sometimes.
You know what
I mean?
Or to be honest about it.
I do know what you mean. It has felt really liberating to say those things.
Yeah. Yeah. A 100%.
I do I I said this in my email to you, but, like, I do, like, the the second words out of my mouth when I get put in touch with a family who's newly diagnosed or, and then you'll and then you'll look up the juice box podcast.
Aw. Thank you.
And and it it does. It just helps so many people. And I sort of hope that we're gonna go. So we so we're leaving at the end of August, we hope, to go sailing again. And and part of part of it is to just sort of show our kids, and hopefully to show whatever small corner of the world, you know, knows our family or watches us on Instagram, that that you can do these things
Yeah.
When you're living with a life threatening chronic illness, and that you can pack enough insulin to live on your boat. And yeah, and that's sort of what the your podcast has done in so many ways for so many people. Is that you you can do this. You are going to get through this.
I hope so.
And that you're gonna find joy again.
Yeah. Right?
I mean, that
It just is that's what's gonna happen. It's it you I don't know. I I always gets I that's there's a stupid, like, country song from the seventies about, not promising somebody a rose garden. And, like and I think it the the the lyrics like, I beg your pardon, I never promised you a
rose garden. Oh, yes. Yes.
Yeah. Yeah. And and I just I think about life like that all the time. I don't maybe I just think about it like that because I heard that song. I have no idea.
Yeah. Because it certainly wasn't through good parenting. But but I but my both my parents are gone now. It's okay if I say that. Right?
But but,
I mean, your your expectations are what ruin your experience.
Yeah.
That's all. Like, go on the boat. If it goes great, awesome. If it goes less than great, just decide that that's great and keep Yeah. You you know what I mean?
Like, none of my stories involve how great everything went.
Right. Right. Well, and at this point, I've I've gotta be honest. Three of my four kids have type one diabetes. So, like, I my expectations are pretty much in the toilet.
Yeah. Like, if if a wave knocked you into the water and then a giant shark from this Comedy Central movie showed up, you'd go, oh, this is what I thought was gonna happen.
Yeah. Oh, your name is Roger. I've been waiting for you. I've been expecting it.
Yeah. I can't believe it took this long.
Yeah. Exactly. Exactly. Yeah. Yeah.
I, you know, as we as we gear up for this, people are sort of like, what are you thinking? Nah. And I'm like, what the fuck? I'm gonna stay here, you know, and and watch my sugar pixel all day and text with the nurse 750 times. I could just be in The Caribbean Yeah.
Without a sugar pixel.
Let's go do something.
Go doing something. Yeah.
I'm with you.
Brimming With Spontaneous Joy45:06
Yeah. I think it's important. And I think that that so when our when our first child was diagnosed with type one, you know, it's it's 2018. Life is crazy. I remember so vividly saying to my mother-in-law, you know, we're never gonna be spontaneously joyful again.
We're never just gonna pick up and be able to go. We're never gonna have the life that we imagined. And it certainly is not the life that we imagined, but it is absolutely chock it is brimming. It is over it is overflowing with spontaneous joy.
Jenny said to me the other day, I don't know if we were being recorded or not, if we were just talking. She's like, I think every type one should just have a bag. It should just sit by the door, and it's so that you can just leave.
Yes.
You you know? Just Yes. Grab like, okay. You're gonna have to grab insulin probably. But Yeah.
Grab the bag and go. Come back, drop the bag there. And then it allows you to be, like, mobile like that. I listen. I watched Arden go out the other night.
She went to a friend's house. They went from the friend's house to a club. They went from a club back to our house. Like, you know, they were they were all over the place. She did she have a little, like, lunchbox with her full of stuff in the back of her friend's cart?
She did. But I watched her. I wish I could I don't know how many people, like, know what my daughter looks like, but, like, she's really pretty.
She's really beautiful.
Yeah. Yeah. Yeah. And and dropped her at her friend's house. Right?
So she said, can you take me and my boyfriend and my friends? We're gonna leave from there. And I was like, yeah. Sure. And she's like, she'll bring us home.
I was like, okay. Sure. So I drop her off, and, you know, the parents are there. And so I get out of the car. You know what I mean?
You'd like, because it feels weird to, like, pull into someone's driveway and just be like, I don't know you. Goodbye. So, like, you get out to say hello, and I'm saying hi and introducing myself and everything. And Arden comes around the side of the car. She looks like a model.
Oh.
And she is holding a green lunchbox. This ridiculous thing. And she don't think the first thing about it.
Yeah.
Yeah. And she she said, I I put it in the back of the car. And, you know, and by the way, interesting story. You know, the amount of time she carries that stupid thing with her to this and that or it's in a car somewhere, you know, whatever. You put, like, insulins on ice somewhere in a car in the summertime.
For all the time she's done that, I don't think it's really been a problem ever. You more often than not bring the bag home, set it down, you never touched it.
Yeah.
But we were having dinner last night, she goes, oh, you know what happened to me last night? It hasn't happened in such a long time. I was like, you know what? She goes, I was climbing in Kat's car, and I knocked my pot off.
Yeah.
And I went, no kidding. What'd you do? She goes, I just put another one on in the car.
Right.
That was it. Right. Yeah. I mean, you can choose to see that as it getting in your way, or you can just not choose to see it Like, that
the routine way that she experiences it. Right? Like, let's zoom out. Oh, the life saving medical device that keeps you ticking fell off. And so you put another one on.
That's kind of momentous. But for all of us and for her, for the people who are living with this thing, it is just, oh, yeah. Then I put another pot on in the car.
No. No.
I mean, that's that's that's huge and routine all at the same time.
And for us and for the other people looking, I do think perspective would help you. I mean, really. Yeah. I mean, is it 1920 when they introduced it, like, they found insulin? So, you know, like, my 21, almost 22 year old daughter had that experience.
It was a moment where she had to like, she was like, oh, that thing came off. That sucked. And then filled up another one, put it on, pushed the button, back on her way again, as a as a computer inside of a computer is taking care of it for her. And she's only 120 some a hundred and some years removed from she would have been dead when she was two?
Yeah.
Like, how is this not a celebration?
Yeah. You know? It is amazing.
Yeah.
It is I mean, my kids hop on their bikes every morning and bike to school by themselves. You know? Yeah. They walk home from school. They ski.
They're gonna go live they've lived on a sailboat. They're gonna do it again. You know, like, life is so full for all of these kids. And and that is a celebration and should be a celebration every day.
Where where do you, dock in Saint you know, in The Caribbean when you go?
We'll go you know, we'll cross over probably to, Turks and Caicos. Mhmm. And then we'll kinda buzz all over. We're gonna go to Puerto Rico. My mom grew up in Puerto Rico, so we'll spend a little time there.
Nice.
We'll kinda hop around.
Can I suggest for an incredibly chill hang? Yes. Please. Saint John.
Great. My goodness.
There is a little bay called Maho Bay. If I was you, I'd find out how to anchor off of that and swim swim. It's just really
Do It All, Just in Case50:00
small. Yeah. When my husband Ben was, like, 19, he had to he did a year of college, and then he was asked to take a little break. And he did, and he fixed up a 26 foot sailboat. He named her Ruby, and he sailed her by himself.
A friend was supposed to go with him to sail to the Caribbean. It was like a ten day sail. The friend got so seasick that Ben had to turn around and drop him off. And Ben sailed down and and lived on Saint Thomas Mhmm. In this, like, decrepit old sailboat that he had fixed up.
And so that has always been there for him, that that was such a, like, truly monumental thing in his life. And we were doing couples counseling this fall, as one does, when one has three kids with type one diabetes. And and I was like, look, I'm I'm feeling ambivalent about this trip, you know, like like, we're talking about it. How's it gonna work? I don't know if I wanna do this again.
And he said, here's why I wanna do it. Because I did it when I was 19, and it changed my whole life. And our kids are gonna survive. They're gonna be fine.
Mhmm. But they do have a
chronic illness that sometimes kills people, And I want them to go out and do it all just in case. You know, I want those kids to just do everything and anything that they can. And this is gonna show them that they can do everything and anything that they wanna do.
It's thoughtful. I'll tell you, Daphne. It's thoughtful because after having close to 2,000 conversations with people, what I can tell you is that not everybody makes it, and you don't know who you are.
Right.
You have no idea which story is gonna be yours, and the best you can do is hope to try to, I mean, point it in a direction. Right? Yeah. But there's just the makeup of people, you don't you don't know what it is. Like, I don't believe that there are people in the world who are, I don't know, struggling and then somebody not struggling.
The difference is that the person not struggling is trying and the person who is struggling isn't trying. I don't think it's I don't think it's that simple. I think it comes down to a lot of things. I mean, we can list them all, but I mean, from education to intellect to opportunity and and support and and probably literally, like, a 100 other things that you could list. And and life is is so variable that you really don't know, like, which one you're you go talk to a 90 year old person who's got four kids in their forties and say, did you always know this is how they were gonna end up?
And they're gonna go, no. I had no idea. Like, I thought I did, but none of them were exactly the way I thought they were gonna be. And then they they meet outside forces in the world that that change their direction again, and you can't get in the way of that. Like, you can't you know what I mean?
Like, I can send Arden out into the world perfect. And if she meets some guy who's crappy to her, could ruin her life.
Yeah.
You know? Like, that's not a thing I planned I could plan for as a as a as a as a parent. People might make the argument, like, well, you could have made it so she didn't choose him or but I don't think you're in control of stuff like that.
No. Yeah. No. And and that is one of the the the it's not a silver lining. I hate, like, when people are like, well, the silver lining is, or, oh, well, at least the kids have each other to go through it.
Like, fuck off with that. Their pancreas like, organs don't work. You know? As a parent, something that has been a gift of is the perspective on I can't control so many things.
Mhmm.
Yeah. But what I can control is giving my kids my love and my attention and my time, and I can, you know, make it work to go do these things with them. Yeah. And that's what I can control. I can't control whether or not their pancreases work.
They're totally fucked. Yeah. But what I can control is that they're gonna live really cool lives right now.
I'm with you.
And I hope I give them the foundation to go off and and and do that for themselves.
Yeah. They should hopefully feel comfortable, believe that things are possible, and then go apply who they are to that possibility and see what happens. They Yeah. Yeah. But no.
I I listen. I there will be times that you look up and think, oh, they all have it. They're actually helping each other. Maybe.
Right. Or Right.
Like, it's a nice thing to say. Like like, if that all goes well, then you'll have three kids who are real supportive of each other with their diabetes. I also talk to a lot of people. I'm like, hey. Your brother has diabetes too.
Do ever talk to about it? No. I've never talked to him about it. Yeah. We don't talk about that at all.
Right. Yeah. Right. Actually, my my my sister has it, but she doesn't take very good care of herself. I'm like, why don't you help her with it?
Yeah. I don't know. Yeah. So you don't know how it's gonna go. No.
Stop it.
No. You have no idea. You have no idea. And and, like and that's what makes it a like, that's a universal parenting thing is you have no idea Yeah. What's gonna happen next.
So I'm with your husband even though I'm sorry. I don't mean to take sides. But yeah. I'd get I Yeah. When you say you're ambivalent, is it a little bit about been there, done that?
Like, we've done this already and it's a lot of effort. Can we do something No.
No. It was like, we have a good thing going. Our kids like their school. We've got a good community. We've got good school nurses.
They again, they walk to school. They bike to school. They have these really wonderful lives, and and it's a heavy lift to go off and do this. And it means, you know, it it it's a financial lift. It's an emotional lift.
Mhmm. And I so so I was just kinda like, how are we gonna make this all work? And why are we gonna make it all work when when life is like when life is finally feeling a little bit manageable again? I Why do we do this every fucking time?
I gotta tell you. I got I I gotta leave for Miami in two days to go on the cruise with about Oh, that's amazing. A 100 listeners. Yes. Once I get on the cruise, I'm gonna be like, this is great.
But every day this week, I'm like, why did I say yes to this? Yes. That's all I can think. I'm like, I I gotta get on a plane, and I gotta pack this damn bag, and then I gotta prep the show ahead of time so that I can go and like Yeah. I don't wanna I don't wanna I don't wanna do this.
I don't wanna do this. And I swear to God, I'm gonna step on the ship, see the first person. They're gonna smile, and I'm be like, this is such a good idea. Yeah.
I'm going to move on to that boat, and I am going to think, okay. This is what we were supposed to do. Mhmm. But you better believe that every day until then, I'm gonna complain to my husband about how much fucking time he's spending working on that boat. You know?
This is your fault. If it goes wrong, I'm definitely blaming you. But I'll tell you, if you can't handle that, don't marry a lady. I'll tell you that right Yep.
Yep. So here is and what I one of the things I wrote down that I wanted to talk about was like and I this has been mentioned on your your podcast before, but like, our number one rule, like, the only rule for us is you do not blame the other person about anything to do with diabetes.
Yeah. It's good
for you. You know, that but, like, that doesn't extend to the rest of life.
No. No. Of course not. Blame it. I don't Everything else
is Yeah. Up for Absolutely.
My wife asks me why I do things sometimes, and I'm like, I've been doing it that way for twenty five years. You've never noticed before. Like, why does it matter today?
Because we've run out of other things.
Oh, she's and she's like, I would do it like this. I was like, feel free.
Yeah. Yep.
I'm not We I'm not married to
this. Like
this. Yeah.
Yeah. Yeah.
No. No. I mean, I don't how long you've been married?
Fourteen years.
Oh, god. I got you beat by twice.
Yeah. Yeah. Yeah. Yeah. I mean, it feels like it's it feels like it's been so long and simultaneously, it's such a fucking drop in the bucket.
But we do we have been together for fourteen years and I do he is still my absolute everything. Like, he is the person for me. And I think that that's been a really beautiful part of this experience Mhmm. Is that it drives so many people apart. Yeah.
Sure. It it's so hard. It's so hard.
The Divorce Statistic57:56
The the stat that I was told when we were diagnosed, when Orden was diagnosed, one in two marriages end in divorce, but two in three marriages end in divorce when they have a chronically ill child.
Yeah. That's Did your endocrin did your endocrinology office tell you that? Yeah. Because I think ours told us that. And I was like, why are you saying that?
Yeah. I did. I was not thrilled when it was brought up. I was like, hey. My kids had diabetes for three weeks.
Like, can you hold this good news for a couple of months maybe?
Fuck the fuck, bro.
Yeah. Having said that, I've said this before, we were in the first carb counting class in the hospital. And my wife and I walked out of it. We were dizzy. And she said, is Arden gonna be able to have babies?
And I said, do you think we're gonna get divorced?
Oh, god.
Yeah. That that's what I said. Well, that's what we that's what we said to each other walking from the carb counting in class back to our daughter's hospital room. Oh, man. It's upbeat.
I'll tell you.
Yeah. Yeah. There's a lot about this that's upbeat.
Can I share this with you, Maybe this is a great place to say this? I I have not said this out loud to my wife yet, so maybe I'm feeling this way, and I'm wrong. But we'll be in August, we'll be married for thirty years.
Wow.
And, we got married early, so I'm still pretty young. I mean, young compared to young compared to 90 year olds, not compared to actual young people. And, I am starting to have a feeling well, I shouldn't put this on paper. I should probably leave me in three minutes after I say this. But I'm starting to I'm starting to feel like this is the beginning of the part where we, like, just have got so much time together that everything feels really comfortable.
Yeah. You you know, like, when old when you see old people together and they just, like, they're happy, like that. Yeah. Like Yeah. I feel like this is the infancy of that part.
Yeah. That's so beautiful.
I hope so. But she might be downstairs being like, you know, I gotta get rid of this guy.
She's she's actually writing out her list of demands Yeah. Right now.
Yeah. Yeah. Yeah. She's like, oh, you know what I'm gonna tell the lawyer? He can keep this, but I'm taking this.
Yeah. The house.
Yeah. Yeah.
The Oakland fridge. Yeah. For his GLP one pen.
He's he can keep his GLP in his pants. I think that's fair. Yeah. And I'm up here going, like, it feels like the beginning of forever.
Yeah. Yeah. That's how marriage is. At least sometimes you gotta be on the same page, but you can trade off other times.
We're just really synced up now. Like, it feels like we finally really know each other. I know I know that's a weird thing to say, but, like No.
I no. It isn't. Because how long does it take you to know yourself? You know?
Yeah. I mean, I just got to that recently. Right.
Yeah. Like, I'm just learning, and I'm almost 40. So I I I it does it takes a long time. And I do think that that having chronically ill children or a child does speed up the process, and that's why so many people get divorced, because it just takes you down to brass tacks. Right?
Yeah. Like, you are life I mean, we had a situation we were at at camps designed for, like, some respite for type one diabetics. It's a great camp, but they serve really high carb food, and it was really challenging. We don't eat low carb, but we eat lower co carb than that. Our kids' numbers were all over the place.
One of them, for the first time ever, he he crashed so hard. He was at 24, and he was passed out, and we were know, you we had to do backseemee, and and it was one of those moments that you have very rarely, but that you do sometimes have where where you just wonder if they're gonna make it. Mhmm. And and Ben and I looked at each other afterwards, and and we just had we had handled it together
Yeah.
As a team.
Yeah.
And that ages your marriage, like, four years in five minutes. Because either you're gonna handle it together as a team, and you're gonna walk out of it like, I love you so much.
Right.
Thank you for being my partner.
Yeah.
Or you're gonna hate each other.
Oh, no.
Yeah. Yeah. I think that's part of, you know, it's like a crucible.
I feel like again, I don't wanna speak for Kelly, but I feel like we're at the part now where, you know, we'll hold hands and walk into a volcano one day.
Yeah.
Yeah. Like, so but I I'm excited about this part. Extra, I I I'm happy to say this. You said you lost 50 pounds. You didn't say how.
But I I I think the GLP is really is gonna make the last part of my life a lot better.
Yeah. Yeah.
GLP, and Getting Back to Herself1:02:22
So
So I so I went on tirzepatide, and what it's done for me is it's also really helped with my just like my mental clarity. Like, and I just read a a article that people are saying this, that it helps with ADHD. It's better than any SSRI I've ever tried. It has just made it possible for me to focus on the things I wanna focus on, you know? Mhmm.
Walking every day for an hour, doing that stuff, get you know, it's been life changing in so many ways.
Yeah. I had a a a somebody close to me, started on it recently. They're just on a low dose. And I just said this in an episode the other day, but I'm gonna say it one more time because I think it was really interesting. She's got a a nervous stomach and is on a medication for that.
Right? And and she said I said, what are some of the benefits you saw this week? And she said, I haven't taken one panic shit. And I was like I was like, no kidding. She was like, haven't run to the bathroom once this week.
Wow. Was like, good for you. You should have saw how happy she was.
Yeah. Yeah.
You know? Like so Yeah. Know? Oh, that's amazing. Yeah.
Just small things. I again, I don't know what I'm talking about. I barely got through high school. But if it's not lowering people's inflammation and impacting things in all kinds of, like, interesting ways, I I I'm I'm crazy, you know.
So Yeah.
So we'll see.
No. It it is an amazing thing. And yeah. And it enables you to to, like, get through that initial really hard part where a lot of people get stuck.
Yeah. No. No.
You know? And and I think also as medical parents, sometimes you're just look like, I would get to the end of the day, and I would have just you know, it's it's it's a madhouse here. Mhmm. Like like, you can imagine. Right?
I have three little kids, 10 and under with type one diabetes, who are running around and jumping and mad and sad, happy and sad. The alarms are going off all day. I'm triaging almost every day Mhmm. With something huge. And I would get to the end of the day, and I wouldn't have really eaten, but but I then I would be by myself.
And how I was, like, giving myself love was by, like, eating a bunch of cupcakes. Mhmm. You know? Yeah. Eating bread and cheese for an hour.
Right? Like, that was the only space I had for giving myself some something nourishing Yeah. Emotionally and physically. And and this kinda and and I was really attached to that in a lot of ways. Mhmm.
And so this the experience my experience with Strengths Upside is it just kinda like it cut down that that noise and that need, and it gave me space to get back to myself.
Yeah. Also, it's probably so sad. You're probably eating cupcakes, filling the dishwasher, and then
passing out. Right? Like And like watching,
like, get oh, fuck. I'm gonna be
up all night because, you know I mean, like, because someone's high or someone's low or
you
know? And you're just kinda like yes.
Anyway That would've killed you eventually. Don't worry.
Yeah. Yep. Yep. Well, I here I am, still staying.
Well, the good news is you sound too tired to make more kids. So Well,
we did take care of that surgically.
Oh, I was gonna say. Yeah. Yeah.
Probably smart. There. Yeah. Yeah. They are great, but but it would be it would be another diabetic boy.
The world does need more, but I'm not gonna
be You you you're not gonna you're not responsible for
for filling them up. Other way. Yeah. Yeah. Yeah.
Also, I gotta think a boy who would jump on a sailboat and sail to The Caribbean seems really sexy. Right?
Yeah. Yeah. Yeah. My husband is He's tricking something.
He's tricking you. And he's
probably smart. Man I know.
Yeah. Yeah.
Yeah. Brilliant. He's a he's a an excellent lawyer. He can fix anything. He's fabulous.
And, you know, I mean, we started looping, speaking of diabetes, in 2018 with a two year old. And our endocrinology practice the the head of the endo practice called my husband and said, we're not gonna support you in that. You're gonna kill your kid.
Oh, in Maine.
In Maine
too. Right? Yes. I gotcha. Yeah.
Yeah.
So so then we called Boston Children's, and and they were like, of course, we'll take you.
You know, it's in the ADA it's in the ADA guidelines now that they should they should support people using do it yourself algorithms.
I didn't know that.
Yeah. They just put that in the the guidelines. People have been fighting to get that in for a while. It's really
cool. Wow. Yep. It is really cool. I mean, the the world of diabetes advocacy is really cool, and I I haven't had any, like, time to dip my toe in.
Though I do hope that that somehow on this trip I can kind of wrap in, like, some advocacy. But I it is amazing what people accomplish, and it's so true because because Loop has Loop made it so that we could get some sleep, some nights.
Yeah.
Right? If we had just been on the Medtronic or whatever, the Omnipod, you know, initial offering, we wouldn't have slept ever.
Right. No. It would have it would have eliminated shots, and it would have given you control of, like, temp baseling and stuff like that. But I don't know. Like, listen.
You would have to be pretty special to act as an algorithm for three different kids. You know? Like, setting temp yes.
I I don't I I
don't think I could do that either. That's that sounds mind numbing, especially because you're still also being their parent and their Yeah. Yeah. And all the things aside of diabetes.
And you're trying to run a household, you know? Yeah. You're you're doing all that. And and because we're in Maine, you know, it's a it's a pretty small there aren't a lot of people here. There aren't a lot of people who have.
I think we're the only people in the state who have more than two kids in a family with type one. So you don't have a real I I I have a great group of moms who they each have one type one. We've got a great text thread. But but that's what's a little lonely about it sometimes is that even I I found myself we were at that diabetes camp, we had that huge crash out, and we were sitting in the parent support, like, room, and I was like, oh, I'm actually jealous of everyone here because they only have one kid.
Yeah. How crazy is I was how crazy is that parents with a child with type one diabetes don't really understand your situation.
Yes. Yeah. Yeah. Yeah. Because you just can't.
So let alone, like, your average bear. You know?
No. No kidding. Oh, it it just hit me the way you said it like that. Like, even like, in the niche of a niche of a niche, you're still a niche. Yeah.
Yeah.
Yeah. I I mean, like, what are the chances? You know? What are I they're really low. They can't be good.
20,000,000 or something. Be good.
One in 6.8 Million1:08:45
Can they? Is there a way for us to figure that out? Because they I
think there's a there's a way we
can figure it. Can't be good chances. Hold on a second. What, let's see if we can do this. What's the statistical chance of having a child with type one diabetes?
How does it change if you have four kids? This is what I wanna know.
I wanna know this too.
Yeah. Let I'll ask our overlords and see what happens. By the way, this this thing's gonna ruin, like, legal assistance. Yeah.
Yeah. Claude has eliminated all lawyer needs. Yeah.
That's crazy. How are they gonna learn? Oh, isn't that how you learn by doing the lower stuff?
Yes. Yeah. No. I think it's a disaster for the legal profession. Yeah.
I think I if I were in law school I mean, if I were, like, in my first year of law school right now, I think I would pivot real fast.
Well, I mean or somebody's gonna have to nerve have the nerve to run a to run a shop where they don't use it and so that people can continue to learn. Or or Yeah. Or have the nerve to pay people to do redundant work so they can learn. No known t one d family history per child risk one in three hundred, which is point three three percent. Chance at least one of four, one point three percent, one in seventy five.
Hold on. While I'm reading this, I'll tell it. Now tell me the chances of three of four children. I'll read through the rest of these while it's doing the math on that. Also, I'm using chat GPT for this.
Yeah. I was
wondering with the clot or chat
I I don't listen. My clot is is personal between me and him. I don't I don't let other people into my Claude. Okay? And that that's that.
That's for me. Okay? Y'all can't have that. That is exactly how I feel. First
degree That's my friend.
Oh, yeah. Yeah. No kidding. Do you see Claude made my website over? Yeah.
First degree relative with type one, one in twenty, five percent. You don't even have any of this, but if you had a first degree relative, it would it goes to one in twenty from one in three hundred, basically, per child. It that would give you a eighteen point five percent chance of all, of one in four having it. A father has type one, puts you at one in seventeen. Mother has type one child born before she was 25, one in twenty five.
Mother has type one child before born after she was 25, one in a hundred. That's interesting.
Yeah. That's fascinating.
Both parents have type one, ten to twenty five percent. Now here's here's where we care about. Right? Assuming you mean exactly three out of four children using the general population estimate of one in three hundred per child with no known family history, the math is my god. The math is crazy.
Your you have a one in six point eight million chance for a family of four children to have three kids with type one diabetes.
Yeah. It's Aren't I lucky?
It's point zero zero zero zero one four eight percent. That's that's just Yeah. Yeah. Sorry.
The Toothpick Saga1:12:01
Yeah. What about if what about the chance of then one of those children having a toothpick stuck in their foot?
Okay. Hold on a second. You're making a good Yeah. What are the chances of one of those four children of getting a toothpick stuck in the bone in their foot in a home alone style attack. I don't think it's gonna have an answer for that, but since we're here, I wanna look.
Yeah.
I can tell you there's a hundred percent chance of it happening.
It's gonna happen at my house again next week. By the way, do you punish the kid who put the toothpicks in?
Yeah. Yeah. I mean, you know, the the the toothpicks weren't geared towards towards any it was it was like a this is what you know, I don't even really know what was going on in her head. It was not geared towards anyone in particular, but that child did lose, all privileges, was not allowed to go to birthday parties, and and did all of the chores of the other child, and had to stick by that child's side day and night for four months. So Wow.
There were certain I mean, because because, like, you have to learn that, you know, impact is different than intention, and the impact here was so wild. My child had the the kid who had the tickling his butt had two surgeries, a six day hospital stay. You know? It was like, it has been a nightmare.
Yeah. I think for all of you who are still not sure about AI, I I wish you could see the thoughtful answer it gave about my stupid question.
Wait. What it say? What did
it say? There is no real statistical table for a child gets a toothpick stuck in the bone of their foot during a home alone style attack. Medicine tracks things like plantar puncture wounds, retained foreign bodies, infection, and osteomyelitis.
Yes. Yeah. He had that. Okay. He had osteomyelitis.
Not not, and this is in quotes, Kevin McAllister assault by toothpick events, which by the way, I didn't mention Kevin McAllister in my question. But the math structure would be this, chances at least one of four children has an event. It shows you the math where you would use to figure that out. For rare events, that's basically four times p. So if the chance for one child were made up, so made up per child risk, one in ten thousand, chances of at least one in four children, one in twenty five hundred.
A real world anchor plantar puncture wounds themselves are not insanely rare. One emergency medicine survey found that forty four percent of survey patients reported at least one previous plantar puncture, excuse me, plantar puncture wound, though that includes normal stuff like nails, glass, thorns, splinters, etcetera. In that study, ten infections occurred among a hundred and fifty six wounds. It gives, you know, links where you can go read more about that. Foot puncture wounds infections are often cited around, around up to ten percent, and the bone infection infection or the osteomycitis, is a known but much rare complication.
You can go to a a PubMed article to learn more about that. But a toothpick penetrating deeply enough to lodge in a bone in is way, way narrower than stepped on something sharp. So the honest answer is statistically unknowable, but almost certainly far less likely than one of four kids getting type one diabetes and likely closer to a freak accident territory than normal household risk, unless, of course, one of the children lives with Kevin McAllister. Then all bets are off, it says. So you
can Thank you.
You can make fun of AI if you want to. Think that's awesome. Yeah.
That is awesome. Yeah. Thanks. That is awesome. We this this experience with the toothpick would like, was so wild that then there was this dark turn where they finally found the toothpick lodged in the foot.
You can't see wood on x-ray and ultrasound, but those were the only imaging that they did. Mhmm. So finally, he still can't walk. It's April. They do this the MRI.
They find a piece of wood. The the doctor goes in to get the piece of wood, and next to the piece of wood, there's very clearly on the MRI a spot of osteomyelitis, which is a bone infection. And the poor doctor biopsies the wrong part of the bone. So she doesn't get a sample of the bone infection. So then we don't know what bacteria caused the bone infection.
So then we're in the hospital on IV antibiotics for my poor, know, nine year old trying to figure out what antibiotics we should even be giving the kid because they biopsied the wrong part of this teeny tiny bone in this teeny
tiny type one diabetic foot. She's probably in there. She's like, I don't see this damn toothpick. I'm like Oh
my god. Yeah.
She's got a life too. I think about that all the time. You started talking about doctors and what they don't know. I think about it a different way. I think she's in there.
She's looking in that kid's foot, and in the back of her head, her her dog just got hit by a car, and her husband wants to go for a thing. Like, she got a whole life too. Totally. Yeah. Yeah.
Yeah. Then and she's trying she's digging around in there, and she got it's the week before her period. She feels bloated.
Oh my god.
Yeah. Yeah. She's like, oh god. Like, I just I don't know how anything's getting done. That's that's all.
You know, we we have we do, like, a concierge doc through our insurance now, and and she came into our lives and has become, like, a dear friend. And and that has been, like, so helpful in giving grace to doctors because she has her whole life going on that I now have a little peek into. You know? Yeah. And then at the same time, she has my texts.
Okay. Now we're at 2.1 ketones, and he's still throwing up. I've given him the Zofran. What do you think? Should I head to the ER?
You know? And then her kid's screaming in the background because he also has so I I agree. They're only human.
It's just a it's a it's a tough situation. It it it genuinely is. I, you know, I go back and forth on it, and I don't I certainly want people to work. I think I could tell you that I think that people are inherently better when they have tasks and things they're proud of and things to get up to do and all that stuff. But some of this stuff is gonna be better when, you know, when a computer Yeah.
When a
computer is
making yeah. When the robots take over. Yeah. Yeah. Because Yeah.
Because, again, I I don't know how many times I can say it. You can't hold all that information in your head and and this thing can.
No. And that Right.
That's that's the difference.
So Right. Well, and that's and and I've I've actually relistened to your your interview with doctor Beach Gem, the other day.
Yeah.
I don't know. Was that December or something? And I was thinking about what you guys were talking about and how, you know, you were saying you come out of med school and you you can only ever have, like, pieces of something, and yet we walk into the ER expecting them to know everything about everything.
That's insane. Yeah. It's But it would be like if I said to you, you need to understand all the code and law
that Right.
Yeah. It off the top of your head. And not not just off the top of your head, but by the way, I want I wanna be able to send a crying child who's bleeding from his leg into a room while the mother's standing over his shoulder. And I'm gonna yell at you about different passages of law, and you need to, like, get them right the first time, and it has to apply to the thing I asked you. Can't you can't
be Yeah.
That's insane. I mean, it's it's great, and I'm happy people do it. But if you don't think that that can be judged up a little bit, you're not paying attention to how all this works. Yeah. So Yeah.
You know what I Go ahead. Go ahead. I'm sorry.
I I mean, I just think that AI should just exclusively be for medical purposes. That's I think we should just regulate it so that it's just because it has so many fascinating, fabulous medical applications. What's not so fabulous about it is, you know, people, only communicating with their husbands via text that Claude wrote for them.
I Well, that stuff is freaking me out. Like like, I'm I'm like, I don't think anybody's even talking to each other Like Yeah. Your your AI is talking to their AI. Like Right. We we don't do we need you?
Or, you know, like like, what and and that's a a disturbing consideration. I also if it's gonna pick bombing targets, I'd like a person to look over it. Stuff like stuff like that.
Yeah. Yeah. Fair.
But but if it's just if it's just parsing through a ton of static information and say and delivering back what is, like, appropriate, then let's put all the money into figuring out how to do that well. Like, Right. That I think is a great idea. I just don't know that I just don't know that top down that's how we think about health. No.
Like, like, it's easy to say you know, it used to be all the time people would talk about, like, I gotta let you go. This has been forever. But, like, people talk all the time about, like, you know, we don't do preventative enough.
Yeah.
Humans don't do preventative. Like, it's Right. It's it's not a failing of the health care system. It's how people think. Like, people think like your husband.
Like, it's gonna be okay. Let's go.
Like
like, go go go go. No one thinks I should probably eat well today so that I don't get colon cancer forty years from now. Yeah. No one's thinking like that.
Yeah. No. Yeah. No. Because we're just humans.
We're all just humans.
Yeah. Nothing wrong with it. But, like, you know, like, it's just I I'm stunned by how many people I interview where I'm like, did you not like like, what because I'm a parent of a child with type one. When when her blood sugar goes up, I think about twenty five years from now.
Right.
But if if but I always try to put myself in the if it was me, I don't think I would think that way. And Yeah. And yet and yet when you interview somebody and you say, like, hey. When you had an a one c of 11 for four years, were you ever thinking, like, I'm doing damage to myself? And they they often go, no.
Not really. And it's not and I don't think it's because they don't care or they weren't trying like, I don't think it's any of that real. I just think it's how people's brains are wired. Like, let's go. I can do it.
I think that's where that phrase, I don't let diabetes stops me, comes from. Right. Yeah. Yeah. Yeah.
There are some people who mean, don't let diabetes stop me, so I take the bag with me. I'm ready in case something goes wrong. I pre bolus my meals, and that that's me not letting diabetes stop me. I think there are other people who say, well, I just ignore it cause I don't let diabetes stop me.
Yeah.
And, you know, again, all very human stuff. So alright. Yeah. I think it's fair to say that if my wife and your husband go, we should probably get together. I mean, this Yeah.
Yeah. We obviously, we get along very well.
Lot in common.
Yeah. Yeah. Yeah. I I mean, the rest of it, I'm not I'm not paying for kids. I just wanna I just want you to know that upfront, especially yours.
Mine are really expensive.
Yours sound extra expensive.
Yeah. Yeah. The cost per child is high here. So I wouldn't blame you. But he'll have life insurance.
You might wanna go more north and try to find even, a cheaper place to live if you possibly. But you seriously do you ever think of moving somewhere that
We we think about it a lot. Yeah. Yeah.
I mean Yeah.
I think especially as they get older, if we don't have a functional health care system in this in this country before it's you know, before they kind of age out of of our insurance and whatever else, we'll need to bring them somewhere where they can survive.
Where do you think of that as being?
Canada seems very appealing if they'll take us.
Where?
Canada.
Okay.
Ireland, you know, we we've got some we've got some Irish roots.
You got a stake there? Yeah. Yeah.
Yeah. So we've got some we've we keep trying to get our our we have one parent in particular who could get citizenship, and we're really leaning on that hard. My sister's in Spain, and once she gets her citizenship, because she married a Spaniard, I think we could kind of do a chain migration thing at some point down the line to get us over there.
Do you really think this could happen?
I do. Yeah. Or we can water world it and just
Just live on the live on the boat.
Live on Grace Hill Valley Pull
out of boat. Pull into the port.
That's right. Yeah. Yep. Just go buy that insulin over the counter and, eat low carb, and we'll be fine.
It's okay. Everything will be fine. Everything will be fine. Everything's fine. Thank you.
It's fine. Yeah. Yeah.
Oh my god. Alright. You're awesome. I really appreciate you doing this. Thank you.
Much. That was really fun.
Awesome. I'm glad you have a good time. Hold on one second. Okay?
Yes. Yeah.
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#1898 Cat Scratch Seizure
Cat Scratch Seizure
A single mom navigates her son's type 1 diagnosis alongside ADHD, a hypoglycemic seizure, and a school that fought her — and slowly finds accommodations, support, and steadier ground.
Jump to a moment
- What led to diagnosis: months of frequent overnight urination and thirst, unexplained bruising, and a scare that sent them to the ER, where his blood sugar was 416. A family history of diabetes helped Amber recognize the signs early.
- Type 1 is covered under U.S. disability law (the ADA and Section 504). Schools must provide trained staff and accommodations — during the school day, on transportation, and for activities — and every student has a right to a full education. Families can request a formal 504 plan; Amber learned this the hard way.
- ADHD and type 1 interact: high blood sugars can mimic or worsen attention and mood symptoms, and stimulant medications suppress appetite — a real consideration around meals and insulin. Changes to one condition often affect the other, so it’s worth coordinating with the care team.
- Severe lows are an emergency. A seizure or an unresponsive person is a call-911-and-use-emergency-glucagon situation — someone who can’t safely swallow should not be given juice or food. CGM alarms are a critical overnight safety net, and a sensor failure removes that warning.
- The emotional load is real and valid — for the child (anger, wanting to fit in, autonomy) and the caregiver (exhaustion, doing it largely alone). What helped Amber: not forcing, letting him own his devices, watching her language (“I understand” can land wrong), keeping him active, and leaning on community and support.
- Bold Beginnings Series — for the newly diagnosed, with Jenny Smith (verify slug)
- Mental Health & Diabetes Series — with Erica Forsyth; Amber leans on these (verify slug)
- Small Sips Series — short, listener-voted management takeaways (verify slug)
- ADA Safe at School — school rights, 504 plans, and accommodations for type 1 (verify URL)
- Diabetes Pro Tip Series — foundational management series (verify slug)
- Juicebox Podcast Facebook Group — community around type 1 (verify URL)
- Juicebox Podcast — all series and free resources
Every word of the conversation
Meet Amber0:00
Here we are back together again, friends, for another episode of the Juice Box podcast. Please don't forget that nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin. Have you tried the small sip series? They're curated takeaways from the Juice Box podcast voted on by listeners as the most helpful insights for managing their diabetes.
These bite sized pieces of wisdom cover essential topics like insulin timing, carb management, and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Dive deep, take a sip, and discover what our community finds most valuable on the journey to better diabetes management. For more information on small sips, go to juiceboxpodcast.com. Click on the word series in the menu. If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group, Juice Box Podcast, type one diabetes.
But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, Type one Diabetes on Facebook. Today's episode is sponsored by the Tandem Mobi system with Control IQ Plus technology. If you are looking for the only system with auto bolus, multiple wear options, and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm.
Use my link to support the podcast, tandemdiabetes.com/juicebox. Check it out. This episode of the Juice Box podcast is sponsored by the Dexcom g seven, the same CGM that my daughter wears. Check it out now at dexcom.com/juicebox. When you use the offer code juice box at checkout at cozyearth.com, you will in fact save 20% off of your entire order.
I'm talking about the sheets, the towels that I use, the joggers I'm wearing now, and anything else on that site that catches your eye. Cozyearth.com. Use the offer code juice box.
Hi. My name is Amber. I'm a single mom with two kids. My younger 12 year old is my type one, and and I have my 14 year old daughter as well.
Okay. You are a single mom. How old are you?
I'm 37.
37. Do you know that when asked to randomly choose a number between one and one hundred, people most frequently choose 37?
I do not know that.
It's one of those weird factoids that may or may not be true. Anyway, tell me again your kid's age. I'm sorry.
Yes. I have a 14 year old daughter, and then my son, he is 12. He's my type one.
12 with a type one. Gotcha. Do do you know, Amber? Are you nervous? You told me you were nervous before we started.
I am nervous.
You are nervous. So here's why I asked. Because when we were talking before you recorded, you were louder. Oh. And as soon as we started recording, it feels like you stepped back like a half a step.
Don't worry about it. Okay? It's all gonna go great. Okay. 100%.
And if you suck, no one will even notice. I'll go off on some weird tangent, tell a story, it'll be fine. Okay?
Alright.
Sounds good. No pressure for you, and you're not gonna suck. It'll be great. So let's find out a little bit about the background first. Your kid's father or you, any autoimmune issues in your families?
Family History and a Mother's Radar3:44
So my uncle, he was diagnosed just a couple years ago with Hashimoto's.
Mhmm.
Other than that, I don't know of any other Okay. Autoimmune.
Okay. Celiac?
No. I think my my daughter, she does have, like, an intolerance, but she's been tested for celiac, and it's been negative.
Okay. How about you? Do you have anything going on? You have PCOS? You got severe anxiety?
You got anything anything inflammation related even? Not necessarily autoimmune?
Formally diagnosed? No. But I sure do think I have a few of those things going on.
Amber's like, listen. I got the Internet. Let me tell you. I got a couple of those things. What things Yeah.
What what do you what do you struggle with?
Yeah. My hormones are all messed up. I do think I might have some PCOS, and I'm definitely an anxious person. My hypochondria, I think, has helped me, especially, like, through this type one diagnosis, though.
Tell me about that. How did your hypochondria help you figure out your kid had type one?
The Symptoms Before Diagnosis5:07
Yeah. Well, funny enough, it it kind of even goes back towards the summer before he was diagnosed. He you know, I I thought he he also has ADHD, so I was worried that his medication was doing something, like, to his heart and everything because I had noticed, you know, maybe four or five months before his diagnosis that he was he would get up at night, go to the bathroom, and then he'd come into my room and fall back to sleep in my room. And I he would sweat profusely. And I, like, felt his heart felt like it was going to, like, beat out of his chest.
And I was always worried about putting him on medicine for the ADHD. And so I contacted the doctor. The doctor was like, the medicine is not doing that. It should already be out of his system. So, you know, it it only happened a couple times and then it just kind of stopped.
So I kinda just I was worried that he had, like, more of a vitamin d deficiency also because he had bruises on his legs this past summer. Okay. He wouldn't wear shorts or anything either. But so to fast forward, he was diagnosed. It was October of last like, not this past, like, 2024.
And so he had a a dirt bike accident, and he really hurt his back badly. And right after that happened, he started going to the bathroom even more frequently. And I'm I I, like, had conversations in my head to, like, not be overly paranoid about things because, like, even my daughter will tell me sometimes, like, that I want there to be something wrong with her. She's but I just wanna be, like, ahead of things. So I noticed he was going to the bathroom a lot after that, and we had just moved.
And we had a wood burner stove, so I thought, okay. Maybe he's, you know, a little dehydrated. I asked him. He said, oh, yeah. No.
I don't like the water at school, so I'm just drinking more at home. And I'm like, okay. I'm just, like, keeping an eye on it. And then right before Halloween, my mother had taken the kids to a trunk or treat while I was at work. And he didn't feel good that next like, Monday, he didn't go into school.
And my mother happened to I lived with her. I moved in with her right before he was diagnosed. Mhmm. But she had noticed that he was going to the bathroom a lot then too. And she said, you know, do you think that maybe he hurt his kidney or or something with the dirt bike accident?
And I was like, no. But I was worried that it was diabetes.
Say no, mom, but I I do have a long list of other things I'm concerned about, including that I think we're turning the kids into beef jerky with a pellet stove. If I had a pellet stove, I would sit there wrapped in my cozy earth blanket. There is one I have on my I know you think I'm making this up. I promise I'm not. There's this fuzzy heavy, like, I don't know.
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You're working too hard to be laying around on an old blanket that smells like a cat. So
Yeah. Oh my gosh. It does My favorite Mardi Gras story so far.
You're like, I think I was drying them out with a burner. And so your mom goes to kidney damage. Hey. What happened on this dirt bike accident? Did he fall off a roof?
Like, what what what was it?
So he was at a friend's house, but the way I heard it, it it sounded like the other person, like, break a little too fast in front of him, and he, you know, got scared and then he, you know, didn't wanna hit them and wound up breaking. And I think there was, like, a pothole or something.
Oh my gosh.
But yeah. And it was his first time on, like, a a big dirt bike like that. He only had, like, a little electric one. So
So what? He hit his back? Or
Yeah. Right on on the the sacrum there, the the low back. Yeah.
Jeez.
But, yeah, he's still got a pretty nasty scar. And yeah. So my my dad was tested when I was little. I remember he would go to the bathroom a lot. Like, this is also what I was, like, justifying in the summertime.
Like Mhmm. Oh, I guess he's just getting older, you know, getting up and going to the bathroom. My dad heeds a lot. You know? They tested him for diabetes, which is why I knew it was like, a symptom.
That's what got you. And Oh, that's what got you. So if something happened to your father, he peed a lot. They said maybe he has diabetes, and then that's what you started thinking. So let me take you back to because you were doing a good job in this story.
So you and your mom were talking. Your mom's like, kidney damage. And you're like, diabetes. So where do we go from there?
To the ER10:49
Yeah. So I called the doctor after that, and I was gonna set up an appointment. And the doctor's office called me back and said, just take him to the emergency room. So I did. I had to, like, actually, I had to bribe him.
He was like, no. I don't wanna get any needles. I'm like, I'll give you $20. He's like, okay. I'll go for money.
$20 got him. That's that's great.
Yeah. After the fact, he was like, now that I need a lot of needles, are you going to give me more money? So Yeah.
Yeah. Set yourself up there.
Backfired. Yeah.
Now listen. Their understanding of money is different between everyone's. Arden said to me the other day, hey. Because her she has a bank card and it expired. So they sent her a new one.
And she sends me a text last night. She goes, I don't think that my money transferred over to my new bank card. And I went, that's not how that works. I said, what happened was you used up all the money in the account. He goes, oh, oh, okay.
She didn't think the money through it. I hope she hears this one day. It's embarrassing how little you know about money, Arden. I'm trying so hard to teach her, but she doesn't wanna learn. So anyway, so the kid hits you for 20 for the to go to the hospital.
And what happened when you got there?
Yeah. So we got there and I I mentioned, you know, getting his blood sugar checked because I was worried about diabetes, but we were also worried that maybe there was some kind of organ damage. So we we got there. You know, they it it was kind of annoying because they checked his blood sugar, told me it was high. I didn't wouldn't tell me what it was until they gave him the scan.
Mhmm. And I was actually gonna opt out of it because I was like, listen. Is this, you know, you said it's with contrast. That's radiation. I rather, like, just how about we just go the blood sugar route because you said it was high, and he kinda guilted me into, like, doing the scan as well.
And then after that came back negative, they're like, yeah. His blood sugar's 416.
Wait. You felt pressured by the doctor? Yeah.
Started using a bunch of big medical terms, like, what if, you know, there is something, you know, inside, you know, bleeding or yada yada, you know, just
this is to
the point.
Yeah. Yeah. I here's what I heard. Hey. We think your kid might have diabetes, but we also have a reason to suspect that we need this scan, that's enough for us to do it, and your insurance will pay for it.
So why don't we do that?
Yeah. It's pretty much how it went.
Yeah. Yeah. Gotcha. Yeah. How about Check the kid's blood sugar and then if that's not the problem, we'll do the scan.
Yeah. And they had already did it and they, like, didn't tell me what the actual number was and, I mean,
I think I was in
a bit of shock. Yeah. They told me after he had the scan and the scan just came back, you know, that he May I didn't have any damage.
Yeah. Scumbag. You know what I mean? I mean, it covered up. Yeah.
I won't
go to the hospital anymore. I would I would imagine. Agitated by it.
Yeah.
Yeah. Because I I think he had already given my son the the the the contrast. Mhmm. Because after the fact, they just took him right away for the scan, I was like, well, they didn't give him anything. They gave to him already.
That's why he was trying to talk me into it too because he already
Lady, we're halfway there. Let's do it, okay? Yeah. Yeah. Yeah.
Caden Doesn't Want Diabetes14:15
So we had to wait for an ambulance because we had to go to a children's hospital, and they wouldn't let me drive. You know, the doctor told my son, you know, yeah, I think it's diabetes. And that was a pretty devastating moment because Caden, like, looked at me and just started crying like, no. I don't want diabetes. Because funny enough, not funny, I I already knew a lot about blood sugar.
You know, in hindsight, was more of a type two. I would joke with the kids. Joke, not joke. Hey. You know, think of your pancreas when you eat that, you know, like, to kinda, like, give them the self aware, like, you know, this is sugar.
This is protein. You know? Like, healthy food choices. Mhmm. Later on in the hospital, my son jokes like, oh, maybe, you know, your talk about diabetes, like, kinda willed this on me.
And, after I started crying, he said he was joking and he didn't mean it. But Yeah. Great.
Yeah. Yeah. Do do you guys I mean, first of all, Amber, you're delightful. But, like, you know, you said you have a ton of anxiety. Is that a good way to put it?
Yes.
Yeah. Yeah.
Yes. That amplified after children.
I was yeah. Yeah. Well, yeah, that yeah. No kidding. I didn't I didn't have any anxiety in mind amplified after children.
Mhmm. So you do you think the kids have it too?
My daughter definitely has more
How about your mom?
More more blatant anxiety, actually. My mom, I would say she's not as anxious as me.
Okay. Well, is that a high bar, though?
It's a high bar. I mean, I yeah. They would joke about my hypochondria when I was little.
So Oh, so even when you were little, you were always worried something was wrong?
I was worried I was sick. Yeah. I remember one time, like, a dog that I would pass by on the way home from school, like, he was, like, mean. I I I don't even remember, and he, like, licked me. I thought I got rabies.
I was like, oh god. He was rabid, you know, like, you know, paranoid thoughts.
Do you have a OCD or I was gonna say, do you have something like I mean, I don't again, barely got through high school, but do you have something else? Have you ever spoken to somebody?
I I had some tendencies when I was younger. I wouldn't say I have any OCD at the moment. Mhmm. I'm very good at rationalizing my my thoughts. You know?
I kinda, like, wait, gather the facts before I lunge into thinking something is worse than it is.
Like counting or skipping over the cracks in the sidewalks or anything like that?
Oh, there was a time in my life, but no. I don't do anything like that anymore.
Okay. So because you found a way to manage it for yourself. That's what you're telling me?
Yeah. I when I was in high school, I was going through some stuff with, like, my dad, and, you know, there was just some I was having mental health issues trying to, like, manage him kind of not speaking with me. So Yeah. Yeah. He isolated you?
Manifested yeah.
Oh, I'm sorry. Well, it's been a bit of a of a slog so far.
Yeah. Yeah.
Okay. We got the kid here. He doesn't want the diabetes. He gets it. Is this a moment for him?
Does he regress? Is it hard for him? Does that carry into the future?
Yes. It was really hard for him. You know, he even in the hospital, like, we had so many different people coming in to explain different things. Like, no one person could give us, like, all the answers. Oh, that's a question for the doctor.
That's a question for the, nutritionist. So that happened a lot in the hospital. When he was there, there was the tech lady that came to show us how to give injections and all that. And he just kind of was like, nope. I'm not having it.
And he started ripping off the cords and, like, I'm getting out of here to the point they had to sedate him. Is
that is that a common level of reaction for him, or was that out of out of character? The Dexcom g seven is sponsoring this episode of the Juice Box podcast, and it features a lightning fast thirty minute warm up time. That's right. From the time you put on the Dexcom g seven till the time you're getting readings, thirty minutes. That's pretty great.
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No. He's he's yeah. He has reactions like that. He's He's
Oh, Amber, you got you got you got sad. What happened?
ADHD, Meds, and the Hard Year21:22
Oh, well, I mean, this past year and a half since he was diagnosed has been a challenge. But even before, diabetes, his ADHD has been so bad that it it also caused, like, a lot of issues, school especially. I never wanted to put him on medication, but eventually, I did. My my uncle said, you know, what's worse, the potential side effects of the medication or what's happening to his, you know, emotions and everything by not being on the medicine.
What was what were some of his symptoms? What was happening?
Well, he just couldn't focus on the schoolwork. He was acting up to the point where I was getting called every every other day. He was getting suspended. They put him in a a program for kids with behavioral issues. This was at his old school, which these kids already had behavioral issues.
So he learned terrible behaviors, like, and how these kids were acting. So he acted even worse because he saw other kids acting up. I wound up putting him on medication and all like like a light switch, he was able to sit, do his work because he would have the behaviors to get out of school because he couldn't focus on it. Mhmm. Which even so after he came home from the hospital, he's two weeks into a new school.
I like, we need to have a meeting with his history of behavioral issues and ADHD along with this diagnosis. We need to have a plan in place. And because he's, like, half an hour from our house the school's half an hour from our house, so I I needed to make sure that he was going to be safe on the van. He drive he's on a van. He doesn't take the bus, you know, safe in the school.
So Well
I yeah. What medication did they put him on?
He's on methylphenidate.
And that just you're saying, like, a light switch. You mean one dose or one week or one month? How did
It it works instantly. So, like, you know, you take it that day, it works that day, it wears off that day, you know. And but the thing with the the ADHD medication is it suppresses his appetite. So when I told his doctor, the doctor said, you know, maybe high blood sugars were causing his some of his ADHD symptoms. That does happen.
So we decided to take him off of the medication after diagnosis to see if, you know, because we were worried about falling blood sugars at There that was no pump, you know? Suppressing his appetite was a big deal. Mhmm. And so we did take him off the medicine and so that was
Half Days and the Fight for Accommodations24:32
yeah. Was that a mistake? It
was a mistake. Mhmm. But I also think that the school was worried about him. They wound up saying, hey. How about we just put him in school for half days so he could adjust to this new diagnosis?
So that wound up happening all the majority of last year. But even with, like, getting any type of accommodations for him, I really had to fight the principal even last year with that because he was like, no. The nurse is enough. This is fine. This is how we've had other, you know, diabetics.
I'm like, yeah. Well, they weren't, Caden, and I wanna know, like, if the nurse is, you know, unavailable. Like, the the high school and the elementary are right across from one another. Sometimes the nurse if one of the nurses are out, they're, you know, subbing between schools. So I really had to push just to get some training done after getting the super superintendent involved.
He was like, yeah. Of course. So we got the van driver tested, which, honestly, we had to switch van drivers because the original van driver was like, I don't want that liability. Really? So we switched van drivers.
The one he has now is lovely. He got trained and then a couple people in the school also got trained.
Very nice.
So I felt a lot better. Mhmm. And and then he was doing half days, but the entire time, I'm they're calling me all the time. Like, you know? Yeah.
You have to come get him. He's having a low blood sugar. You have to come get him. You know, he's acting up. And I you know, it wasn't as bad last year as it was the beginning of this year, but it it was just Hey.
Did they when he gets Terrible.
When he gets a low blood sugar, do they not help him? Why do you have to come because he has a low blood sugar?
He would refuse to treat it sometimes. This was more of an issue the beginning of this school year, which, led to me having to get a lawyer and everything.
For what? What'd you need a lawyer for?
Well, I had to get two. First off, one was because the school so in hindsight, I found out that there was a bit of discrimination going on against him, like, with some programming. Like, there was a summer program that they told me, oh, you know, we don't have a nurse on staff. We don't have a a driver to get him here who's trained in, you know, diabetes. Mhmm.
So, like, I don't know how we would manage that. I offered myself to drive there and sit in the parking lot for that summer program. Same with these after school activities, the intramurals. Again, the nurse leaves. We don't have a nurse here.
There's you know? So I I was, like, offering to take him and and stay there, and, you know, I was like, I don't want him getting resentful of his his diabetes. You know? I'll do whatever I have to. You know, in hindsight, after I get the lawyer, I find out that they are supposed to accommodate him.
Mhmm. I guess I I didn't really think of his type one as, like, a a disability. You know? Like, I guess when I thought of disabilities being disabled, it was more you can't see, hear, You know? Yeah.
So I didn't even think of it in the sense of, like, you know, he falls under, like, the American Disability Act and things like that. But so I feel like I need to breathe.
Yeah. Take take a second. Really. I mean, it's it's obvious it's obviously a lot. Like, I'm I'm I'm struggling between not wanting to interrupt you and trying to help you by interrupting you, so I'm not sure where to go sometimes.
Yeah. Wow. I mean, gosh. Is the father helping at all? Is anybody helping you?
Their father hasn't been involved ever, pretty much. Okay. So no with that. For help, I really don't get too much help, to be honest. It it's really just me.
You know, on occasion, my mother will help if she's around, but she's kind of been off doing her own thing for the most part that's neither here nor there. Yeah.
Well, I'm just saying, it's you know, you got two kids and they're struggling. You have some struggles of your own. You know? It's it's definitely a lot. I I don't have an answer for you, but it feels like it feels like it would be valuable if somebody could, you know, step in once in a while and offer you a break.
Do you get do you get a break? How do you find time for yourself, or are you not able to?
No. There's really no breaks. It it's been a lot better now. I will, like, say that the beginning of the school year, it was a pure nightmare, but things, like, have really settled down. He's in school.
I'm not worried about him, you know, anybody calling me. The it it's gotten so much better. Better. After I had to get lawyers involved. Well, let's even go back, like, two weeks before schools.
Caden didn't want to do the summer program. Honestly, we went to one day of the summer program, and I got anxiety just seeing the school. We were feeling so much better. This was, like, July. And then I realized, like, oh my gosh.
The school is stressing me out even just seeing it, just thinking of, like, everything we went through the year before. And I decided, I'm like, Caden, if you don't want to he's like, yeah. I don't want to. So he didn't do the summer program. Mhmm.
But two weeks before school even started, he this was happening last year too. He started getting stomachaches. I was, you know, slightly paranoid that he had something to do with with his diagnosis. I'm like, oh my gosh. Is this anxiety, or is this, you know, some kinda
The slower digestion or something. I'm like,
oh my god. Is that possible?
I I was assuming you would jump to that. Yeah. Yeah. Yeah. No.
I I did. I did. But, you know, again, I I talked these crazy thoughts out of my head and try to rationalize things. But, you know, the whole summer, he wasn't having any issues with his stomach. Two weeks before school, he's already starting to complain.
And the first day of school, he was so anxious, he threw up. Well, he wasn't sick at all. I knew it was nerves.
Mhmm.
And so in between him, like, he started getting in trouble at school, but then also he would not wanna go because his stomach hurt. So that was happening quite a bit. Now fast forward to this past November, it was right before his birthday. He had a low blood sugar and like they would always do, they would, like, use me. Like, you better eat something or I'm calling your mom was kind of what was happening a lot.
The Security Guard Presses Charges31:48
That's a shame.
So the school principal, you know, put a security guard in charge of Caden. And the security guard, you know you know how they can be, like, trying to kinda strong-arm him. Mhmm. You need to eat this, that, the other. Caden winds up telling me, like I guess he wanted to get out of the nurse's room, and the security guard kinda, like I'm sure he just put his hand out.
Caden swears that he'd tried choking him. But, again, he was having a low blood sugar. So Right. The whole thing escalated quickly. I, you know, I bring him home.
I a couple days later, like, that was, like, a Thursday, they suspended him. He comes back to school the following week. It was actually his birthday. I the only way to get him to school, I was like, listen. Let's just try half a day.
So I wind up picking him up early, and the security guard comes over to me while I'm waiting for my son. And he's like, yeah. You're Caden's mom. I'm like, yeah. Okay.
I just wanna let you know I'm pressing charges after what happened last week.
Wait. The security? Guard said this?
He the security card said this. I'm like, wait. Come again? And I I I kinda just, like, stared, and I think he was hoping I would give a reaction. And he repeated himself.
I'm pressing charges. Your son threatened to kill me. And I was like, what? What? Excuse me?
He's like, yeah. He threatened to kill me, and he was getting, like, he was raising his voice. He was kinda like leaning in towards me. You could tell he was agitated and trying to get a rise out of me. Mhmm.
And I'm like, do you have any formal training in, you know, medical or mental health emergencies? He's like, no. He threatened to kill me. And I was like, well, when you're having a low blood sugar, you can't really, like, control some of the things you say or do. But, you know, you do what you have to do, and we'll just go to court for it.
So after that, I called the principal, and I asked the principal. I'm like, did Caden threaten to kill him? And the principal's like, oh, I know he threatened him. I don't know what he actually actually said, but I heard him threaten him. I'm like, you heard a threat, but you don't know what the threat was?
Like, okay. That makes sense. And I could just tell that the principal was he wasn't answering specific, like, specifically.
Where they where they hired the security guard from, by the way? Wait. Wait. I
don't even know. I it a big thing. I but I wound up I wound up having to, like, find a lawyer because of that. And I thought I was just going to hire a lawyer to go to the magistrate because, you know, like, a week or so later, I get a letter in the mail. They filed disorderly conduct charges.
In the the report, it doesn't say anything about, like, threatening to kill him. It's very vague also. And I even asked Caden. I'm like, did you like, what happened? And he even to this day, he insists that he he tried choking him.
I I think that he did have his hand out and, you know, Caden was, you know, running into it. I'm sure it could have been by his throat. Neither here nor there, Caden did not threaten to kill him. That never came up again in conversation. It wasn't written on this, you know, the incident report.
But but
I I even said, like, I was looking into it. If you threatened to kill somebody at a school, you could get ex
Expelled?
Expelled. You know? So I I 100% don't believe that happened. I tried to get camera footage. Nobody would give me camera footage.
I didn't know what like, I don't know anything about lawyers. So I went to my mother suggested going to the Center for Independent Living. They help people with disabilities. They're like, okay. We we don't help kids, but, you know, I can make some phone calls and see who I could find.
And then they found oh gosh. The I forgot what the name of the lawyers to help educational law firm. The educational law firm. So I talked to them. They tell me that I certainly have a case and that they couldn't take it because they had too many cases.
But they gave me a list of other lawyers and a whole bunch of information in case I didn't go the lawyer route, about, like, Caden's rights and things like that. Very helpful stuff. But, I still wanted to get a lawyer because
What's the frame of time all of this has happened in?
The pay front. It was
It's, like, the last year and a half?
Yes. Yeah. This was just a few months ago. This was started in November. I wound up finding the lawyer in December.
I started putting Caden back on the medication too because I had a meeting with the principal because of this incident, and I thought to myself, I'm like, wait a minute. You know, he was trying to get out of schoolwork years ago. This is familiar despite the diabetes, and I said, you know what? I think he needs his medicine again. Mhmm.
I put him back on the medicine, and, again, night and day, all of a sudden, he's not complaining of stomachaches. He's going to school every day. I'm not I'm I'm still getting phone calls because I swear that they were trying to find more reason. They were worried.
I was gonna say they probably hate his gut they probably hate his guts by now. You know what mean? Yeah. But you're you're you're involved in a blood feud at this point.
Well, honestly, I even didn't put him in school for, like, two weeks after that because I was worried. I'm like, I can tell you're all lying. I don't wanna bring him to school, and you make something up to get him into more trouble, you know? Mhmm. So, you know, you need to put your kid in school.
Now I'm getting truancy letters, and I'm like, okay. I've put him back in school. I'll just hold my breath. I get the lawyer. I had to, like, get every email, every, like, voicemail, every letter, send everything to the lawyer.
The lawyer accepts the case. She in hindsight, I kinda wish I got a different lawyer. It was like, I put all this work in, like, six weeks of gathering paperwork, and then she's like, yeah. I'll accept your case. You know, you need to sign this.
And this whole time, I'm thinking it's free because that's what the education law center told me. And she's like, yeah. Well, if you you know, it's free unless, you know, you cut out early and decide not to finish up with the case or, you know, any money that my son might get, I'm gonna take, like, 30% of that. I was like, what? Like, oh my gosh.
But I decided to still go through with it because I put all this time into giving her all this information, and I didn't wanna take any more time away from Caden getting help at the school. Yeah. I So, you know, I and then she told me she's like, yes. I'm I'll I'll help you with this, but you also need to get another lawyer. Like, I I don't do anything with the magistrate, so I wound up getting another lawyer to go in front of the magistrate for the whole security guard thing.
And
Can you just go somewhere and start over? Have you ever thought
of thought I was doing moving To
your mom's.
Moving here.
Yeah.
Yeah. Well, to backtrack, this past September, Caden had a seizure
From a low?
Children and youth got yeah. It was a low blood sugar, and children and youth got involved because of it. I didn't even mention, like, how angry he was after the diagnosis. There was a lot of emotions going on.
Yeah. Sure.
A lot of holes in the walls. Hard time accepting. Like, even in the beginning, he didn't wanna eat certain things. Once he got his insulin pump, he started feeling comfortable eating again. But then that was the other thing the school was doing.
They were so up in his business with things. You know? I need to see how many carbs you had. I need to see what you ate. The lunch ladies are watching him, calling the nurse, telling them what he ate, you know, things like that.
But so back in September, he we were having an argument. I don't even remember why he got mad. He ripped his Dexcom off. I went in my room because my mom was like, I'll I'll help him. I'll put another one on, you know, we'll we'll take care of this.
Because I was just like, I can't I can't with this boy right now because I've also been going on very little sleep since all of this. So after, you know, a couple weeks of interrupted sleep, I I was exhausted. It was right before bed too.
The Night of the Seizure41:16
I hear you.
And I didn't put my Sugarpixel on, and, you know, they put a new Dexcom on and it had an error in the middle of the night, some error I've never seen before or again, and it stopped working. And he you know, it was just giving him his basal insulin. And and that was, like, for three hours in the middle of the night. And so my mom like, I didn't hear any alarms. I was sleeping through everything up.
But it was around 06:15 I woke up, realized, oh my god. Slept through the night. Running to his room, and he just seemed kind of out of it. I just automatically gave him juice. I didn't check his blood sugar or anything.
Didn't know my mom was just in there, like, fifteen minutes beforehand and saw him, you know, unresponsive. There was foam coming out of his mouth. Telltale signs that, you know, he he didn't put it together that it was a seizure. I mean, that sounds like a seizure. But she had already given him, you know, some juice before I even got in there.
He kinda snapped out of it. He didn't even like, he didn't know he had a seizure. I'm like, oh my god. Do I take him to the hospital? I knew that they couldn't really do anything for him, but I still wanted him to get checked out.
But he got so sick. He was throwing up. He was super nauseous for a couple hours. So, like, he was just throwing up. He fell back to sleep.
I'm like, I'm gonna take him to the emergency room after he he wakes back up. He had a terrible headache for a few days afterwards even. And but, you know, I took him to the emergency room, you know, they there was nothing they could do. They were going to give him something for nausea, but he wasn't nauseous by the time they actually saw him. They gave him some medicine for his headache, you know, and then they wanted him to go get, like, a sleep study done to make sure it wasn't, like, epilepsy and, like Ugh.
Even though they were, like, I'm sure it's not, but this is our protocol.
If I Gave You a Magic Wand44:08
Amber, can I ask you a question? I gave you a magic wand and I said, wish for things that make everything better, do you know what would help? Did you
have like, let's Oh, yeah.
Know what I mean? Yeah. What would help what would help?
Like, a second me would be great that would just, like
Right.
You know? Maybe
More hands, more time.
Yeah. Honestly, like, having another person, money, the the whole time, like, I wasn't working. So it it it was really rough this this past year
and a half. But You you weren't working because of having to put the effort into the kids or because you didn't have a job or what was the reason for that?
No. I mean, I I got FMLA, so I was working, but it was maybe half the amount. There was times I would go into work, get a call from the nurse, had to just leave soon as I got there. Or, you know, maybe he's, you know, has a stomachache and didn't wanna go to school, and I couldn't leave him home. So I would have to call off a lot.
Mhmm. So that happened. Yeah. Like, a bit
When you think of your son, do you think is he a good kid in a bad situation, or do you think he's do you think he's prone to just being bombastic?
He's a good kid. He's trying to get a grip on his emotions that they're bigger than he is. Mhmm. And through all this, I realized, like, a lot has to do with his ADHD and executive functioning. You know, he something happens, he's zero to a 100, you know, and we have to work backwards from a 100 and calm him down if, you know, something upsets him.
Do you know what upsets him, or could it be anything? It's
no. It's it's not. Like, what what except I
don't know. Like, it's not random. You you the when it happens, you see that, like, oh, that's reasonable that he's upset.
He like, he doesn't like being treated unfairly, which was a big issue he was also having with this school. He if he knew, like, his math teacher, she's a total turd. She made me cry at the parent teacher conference.
Wait. She's a what a total what?
A turd.
Oh, okay.
But, like, if he knows if he feels you're treating him unfairly or that you don't like him, he he's going to give it right back to you. You know what I mean? Mhmm. So there was a lot of that going on with with certain teachers too.
But Is any of this is any of this I don't know. Are are they righteous in any way? Like, is is he like, can you put yourself in their shoes for a second?
Oh, yeah. I put myself in their shoes for a whole year. Yeah. They're like I was like, no. I understand.
You know, you he know, and I I would explain to them. I'm like, if he doesn't think that, you know because he he'll tell me things. He'll be like, oh, yeah. My math teacher, you know, she told the kids, you know, if he bothers you, I'll move him to the back of the classroom. You know, I like he's like, I was just sitting there.
I wasn't doing anything. Why did she say that? You know, like so things hurt his he's sensitive. You know? Things do hurt his feelings, but the way he acts
They feel like he feels like he like they're shitting they're shitting on him a lot.
Yeah. And does it seem like that told. It it does happen a lot. Yeah. Honestly, like
Well, he's an easy target for them. Right? He because in their head, right, he's not a good kid, and he's the problem.
What happens. Yeah. Yeah. Exactly. Because they'll they'll just you know, it's it's Caden.
He's the problem. Even if it wasn't him, we know his background.
He's a good scapegoat. Anyway. Times too.
He's been a scapegoat so much. So I've always been there trying to, you know, stand up for him when I can, you know, so his confidence doesn't get shattered. Like, even this whole thing with the school, he still wanted to go to school, and I'm so proud of him that it didn't, like, crush him and you know, because the the principal even at one point said, how about homeschooling? And it's like, He actually wants
was like, hey. Could you take him and leave, please? Is that what that's Yeah. You know, there's this gosh. There's this book.
I forget which this is helpful. I'm not sure which book I read this in. Right? But I guess there's this kinda, like like, psychological study that was done. They went to kindergarten teachers, and it turned out that kindergarten teachers completely unbeknownst to them, meaning they did not know they were doing this.
They were kinder, more lenient, and more loving towards attractive children.
Labeled the Problem Kid48:48
Oh my god.
Yeah. And it's not it's not a thing they did on purpose. They didn't like like, no one stood up at the front of the room and went, that kid's cute. I'll be nicer to that kid. But they assume that attractive children are smarter.
They cut them more breaks. They like them better, like, the whole thing. But then once you really, like, examine it, they have no idea they're doing it. And so I'm wondering
see that?
Yeah. On the flip side of that, if once a kid is problematic, you're probably digging the hole deeper and deeper for him, you know, I I would say unconsciously if you're the teacher.
Oh, yeah. He he's totally been labeled. Now take him out of school and put him in sports, he's great. Wouldn't know that there was any issue. It it's been
That part of his life goes really well.
Exactly. And, I mean, his father had terrible ADHD, so did my dad. Mhmm. Neither of them graduated high school, you know. I just I see them and I try so hard to not have my son wind up like that.
Did did did either of them have success in life as adults?
No. Sorry. No. They don't.
I was hoping you'd be like, my god. Yeah. Like, he ran a a very successful small engine repair shop, Scott. But no. So they had trouble navigating life in general.
You're worried about that for him.
Yes. You know? And I'm trying to, like, parent him in a more compassionate way, you know, back you know, when they were growing up, it was like, you know, stop acting up, you know, smack them around a bit, you know? Mhmm. Like, why don't you listen?
You know? And, you know, that didn't work out for either of them, and I don't want And try not to have
that happen again. Yeah. Of course. Yeah. Hey.
Listen. The medication I'm sorry. I think I'm am I getting sick? Uh-oh. Back of my throat is I oh, god.
I shouldn't tell you about it. You'll think you're sick now.
Honestly, Caden just had a sore throat and everything. So
No. I'm sorry. I just have a little bit of, like, whatever's going on back there. Tell me about the medication again. Is it methyl what is it?
Methylphenidate. Phenidate.
Okay. So I thought that's what you said. I looked it up. It's a stimulant. And is he on it right now?
Yes. He takes it while he goes to school.
But in ADHD, it feels calming because it's a stimulant that feels calming because it calming, end quote. It improves signal strength and attention control circuits. Simply put, your brain uses chemical bestengers, especially dopamine and norepinephrine to help with attention, motivation, task starting, impulse control, and working memory. This medication mainly works by blocking the reuptake of dopamine and norepinephrine. Meaning, it slows the brain from vacuuming those chemicals back up too quickly.
More of those signals stay available between neurons for longer. The FDA label says the exact therapeutic action in ADHD is not fully known, but the medication is thought to block norepinephrine and dopamine reuptake and increase their availability outside of the neuron. Well, that's what it's doing. Who the hell figured that out?
I don't know, but thank god they did it because well, that was the thing. Like, I their grandmother on their dad's side, you know, she proudly would say, you know, oh, yeah. You know, I I had given him, you know, her son, their dad, Ritalin, and their, like, PCP said, take him right off of that. Like, you're not giving him any of that. And I'm like, now look at him.
You know what I mean? Like, what if he you know, that medicine wasn't demonized and you didn't didn't take him off of it? He could have had a completely different life, you know?
What is it? A ton of medications here. Common ADHD meds, Ritalin, Concerta, Medidate, Methylin, Quilvant XR, Quilchu ER, but, I mean, there's a ton of different ones. Some of these look like extended release and stuff like that. So why do you have them on it at school and not always?
Well, it also affects your sleep. So it's, I I think he has, like, the extended release. It only lasts about, like, six, seven hours.
Okay.
If he were to have it all the time, he would never sleep. He already has a bit of an issue falling asleep. Like, it's like, if he forgets it, he usually takes a nap after school. But if he, now my throat is, like, dry. Sorry.
I'm sorry.
Did I do that to you by coughing?
Oh my gosh. I didn't know I was that bad with my hypochondria.
Jeez. I coughed and Amber's like, I'm I'm verklempt. Everything's going wrong. Go ahead. Take a drink.
I'll take a drink too. We'll do it together. It'd be a tea time.
Oh my gosh.
Was fascinating. Thank you very much, Amber. I appreciate you admitting that out loud.
But, yeah. I don't remember where we were.
We feel from
all over the
We were a team for two. The the medication help stops him helps him with some stuff, but hurts him because he can't sleep. So it's it's not a perfect, obviously, answer for him. So when you stop and think about him because you're the only one thinking about him. Right?
And I would so when you stop and think about him, is he better off on it or better off off it? And why?
He's better off when he's on the medicine for sure. Like, whatever is going on in his brain, especially when it comes to to focusing on school,
he What about if he wasn't in school though? Like, like, I let's let's imagine you live on a desert island. Do you think he would need it?
I don't know. I have been curious to like, I haven't actually witnessed him on it because he only take it while he's at school. The doctors would like him on it every day just to, you know, keep consistency, but I would have to wait. Like, I work weekends. I would have to wake him up for yet another thing to give him the medicine, like, around, like, 07:00 on the weekend, and I already wake him enough, you you know, when he's got a low blood sugar and, you know, he like so I'm like
You're not with him on the weekends, generally?
No. Generally, I have They're at work. Yeah.
Yeah. What do they what do they do during the weekends? Are they with grandma or what do they do? Are they feral? They on the They're they're they're kind of
feral, honestly. Like, my daughter, I kinda put him in charge if there's an emergency, and I I hate to do it, and she's not too thrilled with it either. But, like, my mother, she works too, but when she's not working, she is off doing her own thing, pretty much. Like, I I don't wanna talk, like, badly about her, but even, like, a month after diagnosis, I was like, I think I could keep my job, you know, with your help and, you know, manage his his diabetes. And she's like, yeah.
I don't think Would
love to, but my college game is on Wednesdays. I gotta go.
You know? Yeah. And she has held true to that, not wanting to really
Be involved.
Help. Yeah. So, unfortunately, like, she's kinda going through a divorce and, you know But your
mom's getting divorced?
Yeah. Well, it's part of the reason that I moved in here. It was, you know, beneficial for me to save money and help her with bills, and then it just worked out that way. Yeah. Like like it did.
But but yeah. I feel like I had a lot to say, so I'm kinda going in circles. I was I was I was talking about the seizure. So I had two therapists coming to the house, family therapists, and I had told them I'm taking him to the emergency room. We should be back for a 03:00 appointment.
Well, they wound up calling Children and Youth because they said that I waited too long to help help him get medical care. So, you know, they told me that, like, listen. This is what we had to do. I was like, I'm through with you. I can't believe you'd do that.
Like, I I was very
Cat Scratch Seizure57:26
upset about that. Like Wait. They threw you under the bus. They said that you waited too long to get a medical so if I remember back to the seizure, you fell asleep. The CGM was messed up.
He got, automated insulin more than he should have. Your mom finds him frothy, unresponsive, gives him a juice. Mhmm.
And then she
just by by the way, I didn't I didn't wanna ask this part, but she just fucks off and leaves after that? Doesn't come get you?
My mother, I think, had worked that day. Well, that that was part of the thing that I'm agitated with her about. She heard beeping. Like, she heard his alarms going off that night, and I guess, thought I was taking care of it.
But she did get up tried gave him juice and then left him alone?
Well, I guess she went out to the kitchen. She was just out in the kitchen when that happened, like, probably getting ready for work. And then she came back, and she's like, yeah. I gave him juice. I checked his blood sugar.
His blood sugar wasn't, like it was probably, like, 70 or something. It wasn't, like
Okay. So she checked it. He was 70. You think she maybe thought he was just asleep and a little low and gave him the the juice.
Yeah.
Okay.
And then 15 didn't yeah. It didn't hit her.
Yeah. Yeah. Give me a second. Then fifteen minutes later, you roll up on it, see what's going on, give him another juice, you come to the conclusion that he's had a seizure.
Yeah. She told me what happened. Well, she even heard convulsing
Okay.
At one point and thought it was my cat having a seizure. She's like, I thought it sounded, like, bigger than mama bear, my cat.
You people do not need a cat. Let me just say this, Amber. Amber, you don't you don't need a cat. There's no more responsibility necessary in your life. And so Oh my god.
So she
She's crazy that my cat like, I think stress makes her have seizures because right after Caden was diagnosed, I thought I was gonna have to put her down. She was having, like, seven seizures a day.
Your mom thought the cat did it. Your mom thought the cat did it. Right?
Well, I she thought that the cat was having a seizure. That's what she heard overnight, and it must have it must have been Caden because
Can we call this episode cat scratch seizure? I think maybe yes.
That's actually hilarious.
Thank you. I'm doing my best over here, Amber, to make your incredibly sad story more fun for people to listen to. I know.
I I was like, I hope that this doesn't
just turn into a big party. It doesn't. Alright. I don't think it's listen. Here's what I think.
If if I can be candid. Right? You're limited in help. You're limited in in finances. You have to go to work.
Your kids have problems. I it sounds to me like you're doing the best that you can. The best you can is not awesome, but it is it is the best you can. I listen. I grew up in that a house like that and nobody around me ever.
Like, I got up in the morning. I went to school. I came home. My mom was gone. She got home at 09:00 at night.
She yelled at us to take a shower, and then that was it. You you know what I mean? Like, there was we were broke. We didn't have the luxury of hanging out with our kids or chatting or being there on the weekends and, like, that none of that. I didn't live any of my life like that.
And I ended up raising my brothers, which sucked, by the way, in case you're wondering how your daughter feels. Mhmm. But, like, a but point being, this is what it is. I mean, you can't stop this from being like, people could listen to go, oh, she should do this. She should do that.
Try to get the school to help her. They're a problem. Try to get some outside therapist to help her. They fucking threw her under the bus while she was trying to do her best she could with the kid and the seizure. And, like, every time she turns to somebody, they shake her down.
The lawyer shakes her down. The lawyer doesn't wanna help your kid. The lawyer wants to sue the school, make 30%. That's what the lawyer wants. Right?
Yeah.
Yeah. The dad ain't helping anybody. Right? Your mom isn't half checked out, and I don't know if I can blame her or not. That's neither here or there because she's not helping you.
And so and maybe she doesn't have the ability to help. So truth be told, you're trying to keep all these balls up in the air until these kids get old enough to be a little more responsible for themselves hopefully. And then, I mean, the best you can hope for is to is to help them, I think. I don't I hope this doesn't sound sad. I think the best you can hope for is to help them break this cycle as adults.
Like, you're already totally. Yeah. You're already in it, Amber. We're we're not going backwards now. Like and that and fair enough.
You know? And you love those kids. It sounds like you love them immensely. And and so Yeah. Yeah.
Yeah. So you gotta help them get to the part where they can make better decisions. You gotta set it up so your daughter doesn't end up with some scattered guy who's gonna flake on her. Like, that's the goal. Like, you're you gotta find a thing in the world that your son can do where he can be peaceful and sleep and at the same time take how his brain works and and adapt it to the world somehow.
Like, I think the biggest like, I don't know shit about any of this. Okay? But listening to your story, what it feels like is that that kid's a square peg, and you were trying to pound it into a round hole at school.
No. Absolutely. Like, I he is, you know, not a little, you know exactly.
He doesn't fit in that scenario.
He thinks that's inside the box. You know? Yeah. And I just I've been trying to, like, you know, just encourage him until, like, you know, maybe he could go to, like, a trade school. I I can see him doing something like that where he's not just sitting down in a box.
You know, there's
room Oh, it's not right for him. Yeah.
Yeah. Yeah. You know? It's it's not. And so I'd yeah.
That's what I've just been trying to encourage him so he doesn't lose that, you know, self worth. I mean, he was in kindergarten. He's like, I'm bad and I don't know why. You know? Like, after he he's like, I'm like, oh god.
Don't say that about yourself. You know? Because it was it went back that far. You know? He was running and hiding under the table, you know, and everything.
So, you know, there was always, space. You know
He's and it's and it's not it's not something you can just tell him to stop doing. It's not like that. Right? Like so it's a bad situation, but it'll also be over fairly soon. I you know, it's funny.
Maybe the homeschooling is not a bad idea. Like Well, that's
the thing. I did actually take him out at his old school because I saw how it was emotionally destroying him, and I did put him in home. Like, I did like, I I worked at a different job at the time, and, I mean, I cut my hours. I don't even wanna get into it. It didn't work out, we'll say.
He wound up wanting to go back to school. It just put me in a financial hole, which is part of the reason I I moved in with my mom to, like Mhmm. Start, you know
So you think
get all that back in order. Yeah. So Wait. Wait. Wait.
Give me a second here, though. Like, I wanna go back to school.
Why? What what didn't work about it?
He wants to fit in. He always just wants to be like the other kids. You know?
Oh, okay.
Even when he was little, I would pack him a lunch. He would he started throwing it away. I just wanna eat what the other kids eat. So if you can imagine, that's through diabetes and that was Oh,
so he so even though he doesn't fit in that scenario, he desperately wants to. Yeah. So does he, be on the medication for school?
He he sees the importance. He does. He even said, he's like, I'm not anxious anymore.
Oh. You know,
I wanna, you know, like because he's seeing a therapist at the school, and, you know, they go through, like, their, like, game plan. And he told her, like, no. We don't have to work on that anymore. He just wants to work on, you know, his emotions, anger. He he's very aware of, you know, how he is and how he doesn't want to do you know, act certain ways.
Yeah. Listen. Are any of these other medications better? Like, does anybody ever say, like, like, can we get some of the benefit we're getting without the the sleep issue, or is that just is this part and parcel for all these meds?
I think it's how stimulants are, and I didn't want him to, like, bounce around. Like, it's the the good is outweighing the bad in my opinion. Mhmm. You know, again, I get worried. I'm like, are we gonna be messing with the liver, getting this?
You know? Because some of them, they take weeks to even start working. You know? So I'm like, I don't want to take him off of this, see if it's six weeks this is working, it's not working, then have to put him on something else. You know?
So it's like, let's just stick with what's working. Yeah. Okay. And, yeah, that's the let let me go back. So Go ahead.
The reason I had mentioned the seizure, now children and youth call me, and they I'm like, listen. I'm wasn't the first time I got children and youth called. They actually the school, the year before when I took him off his medication, they called Children and Youth saying I wasn't giving him his medication even though the doctor said, you're the mom. Do what you want. You know, like, it's up to you if you want him on the medicine.
But, anyway, I, you know, I came at it like like, I'm, like, two steps ahead of children and you taking my kids away from me. And the lady was like, listen. I'm not here to take your kids away. We could just forget this phone call ever happened, or you could look at me as an aid. Maybe I could help you in some way.
So I'm like, sure. I could use help. Let's let's see what you have. Yeah. She winds up sending us a lady that was kinda like a therapist, but she I'm not quite sure what she was, but she actually had type one, and they're like, you know, she understands.
Like, so this lady's coming to the house. She winds up coming to the magistrate with us. I had the lawyer and, you know, I tell him what happens. We're all at the magistrate, and the lawyer's like, let me try talking to the security guard. Maybe we don't even have to go in front of the magistrate.
He comes back. He's like, this is, like, bullshit. That's what the lawyer actually said to me. He's like, yeah. He wants Caden on probation for six weeks, and that's how he'll, like, you know, drop the charges.
And he's like, I don't know about you, but that doesn't sound good to me. I was like, absolutely not. So we proceed in front of the magistrate, and I thought this was gonna be open closed, medical emergency, you know, all dropped. And, honestly, the security guard, he kept pushing it. He's like, I wanna know how this cannot happen anymore.
He shouldn't act like this. You know? What are we gonna do about it? No. This isn't good enough to to the point where we actually had to put the woman like, she had to, you know, go into the stand and, like, testify, you know.
And she not only had type one, she was a nurse and she was in school to for psychology. So she had a lot of credentials and, like, you know, she spoke and she she rocked. Like, she was so impressive. You know? And, like, at one point, you know, the security guard said it again, like, how can we prevent this?
She's like, I don't know. Cure diabetes? She's like, you know, like, you can't. Like, the you know, it's diabetes. There will be low blood sugars.
Yeah. You're trying to
An Aide, and a Nurse Who Testified1:07:22
hold a 15 year old accountable for something he might have said when he had a low
blood 11.
11. He's my he's my
12 year old. Yeah. He was 11 at
the time. What are we talking about here? Like, rid it's ridiculous. What what's wrong with this guy? Is he bored?
He needed something to do? The security guard? I mean
Yeah. Good question. I think at this point, like, it went I don't think that they thought I would get a lawyer. I thought that they would just, you know
Is your son, like, nine feet tall and weighs, like, three hundred what's he scared of exactly?
Oh, he was always a tiny little thing too. Like, you know, I I do think that they were just trying to prove their case because at this time, they were worried that I was getting a lawyer, you know, to come after the school.
Previous, do you think they pushed the security guard a little bit to try to cause a problem to get rid of your son? Like, you or or what I mean They
might have. Honestly, because, like
Are you in the woods? What's going on? I need you near a Metropolitan Center. I I
kinda am in the woods.
How are you? I am.
But yeah. So the the magistrate, she wound up, you know it it seemed like she didn't want to take our side, but she had to to kind of an extent. Like, that was the vibe I was getting, but she was also like, this doesn't seem like it was the security guard's fault. This seems like it was the principal's fault because why did he put an untrained officer in place of a medical emergency? And I was like, oh, that is fair.
And then she kinda insinuated, like, this seems like a school issue, in which case my lawyer was like, she's actually got another lawyer and will be coming after the school because of all this. You know? So that was the end of that, and I I was really glad that that woman had got on the stand and spoke because, like I said, I couldn't believe that it wasn't as straightforward as This
is a medical thing. Yeah. We're sorry. Bye.
Face closed. Like, sorry to waste your time. But so, I mean, for that alone, I was glad Children and Youth had gotten involved and sent her to us. Because even, like, when she would come to the house, she's like, everybody just always tells me, you just need more help. Like, you know, like, that's all you need.
I would have suggested a lawyer anyway. You're already getting a lawyer. There was really nothing more she she could do for us.
Right. You know? Jeez.
But so she doesn't come around anymore. Fast forward to more recent. I had a, like, a lot to say, so I'm really trying to
You're doing well. Hey. Listen. It's a it's a big story, and you're doing a good job getting through it. Don't worry about it.
We have, like we can do, like, ten more minutes, and then we're gonna we'll be I'll be over too far. But, like, let's take a second and think. What else did you wanna talk about that you don't think we got to?
Yeah. Well, just like, the case is all closed with the lawyer and the school now, and I didn't even know what I was exactly, like, fighting for getting that lawyer, but they wound up accommodating. They were trying to get him out of the school to go to, like, a, like, a behavioral health school. Mhmm. But we wound up getting it, so he he goes over to the high school instead of being with that, like, snotty math teacher, and he goes over to the high school for they have, like, some teachers that help with behavior.
Yeah.
So he goes over there for a couple classes, and they also we got it. So, like, they can't call me for every little small inconvenience that now I like, the information I have now, it's like, oh, now I know that if, you know, he wants to do an after school activity, which he wants to wrestle next year, he wants to play baseball for the school. Like, so like, there was a lot of other things that I was like, how is this going to work if I have to sit at the school, you know, like I thought I had to do previously? So there was a lot of little things like that that we we got taken care of, and they also gave him money in a fund. Like, it's not like I got money, but there's a fund for his education that he got.
Do you do you think the high school is just better equipped to help him?
Yes. And even, like, one of the, like, counselors that he talks to even said, like, he's gonna do much better in the high school. They have a lot more support in place. And
Well, maybe this is the bit yeah. Maybe this is the beginning of a new chapter for him.
Yes. So he goes there. He loves it at the high school. Like, before the whole magistrate security officer issue, I was asking him, like, maybe he needs some tutoring. He only got half days last year.
And they're like, oh, we'll see, but they couldn't find anybody. Turns out that it was also illegal to not provide education for him and, like, them doing the half days and then him not getting a full education.
Yeah.
Like, it's every student's, like
He's got a right to
a full education. Yeah. So now we have this fund where I can get him tutoring. I could even get him executive functioning coaching, which I didn't even know was a thing to help kids with ADHD. Mhmm.
So I'm looking forward to all that. The case was very quickly resolved. Actually, the lawyer had told me she thought that this could go on well until next year, and it's already been all closed out for a month now. She wound up not taking that 30% of the money that he got because I think that she was just happy with what she caught and how quick it went the way it was. Mhmm.
So, like, he's happy now, and I'm just, like, so thrilled that he's been doing so much better.
Yeah.
But, yeah, that was
The fund is is the result of the of the the lawyer's work.
And part of it was, you know because also they were suspending him, so he was also missing school. And then it was like, well, how is he supposed to do his schoolwork when he's not here Mhmm. When you're suspending him all the time? They're no longer doing that anymore, thankfully. Like, yeah, it's
How much longer till he's out of that school totally?
Just two more weeks. Yeah. He goes to seventh grade, and the high school is seventh to twelfth grade.
Graduation day. Get out of there. Yeah. Yeah. Yeah.
Yeah. Definitely. So just so thrilled about all that.
How old is he today? He's 12. Okay. So he'll have the summer, and and maybe, you know, maybe he'll he'll change a little bit. Maybe his situation will get better.
Maybe he can spend the summer getting better at the diabetes thing, getting better at the ADHD thing. Really give him a great launch at the high school and get him going. You know.
Yeah. And I I think a big issue was too, like, I think he was also depressed. I didn't put him in there's no fall ball at the school district that he goes to in. So it was like the first time he hadn't played baseball when school started.
Okay.
So I've I noticed, like, I just have to keep him in things. You know?
He's been moving.
Yes. Yes. He does.
Well, I kind of I so you live in Pennsylvania. Right?
Yes.
Yeah. There's fall ball out there somewhere. You're just gonna have to get into a travel league to find it.
Yeah. I I've thought about travel with my work and
How are gonna do that?
Don't know if I could make it work. So so he's actually going to start playing football this this year. Like, it was always baseball, like, his whole life. Ever since he was, like, four years old, it was always baseball. We started at this school, and somebody was like, oh, do you wanna wrestle?
So he started wrestling. Well, honestly, it was right, like, two weeks before diagnosis. And I remember taking him to wrestling practice, and his blood sugar went to, like, two fifty. And I'm like, you know what? How about we learn this diabetes thing, and then we come back wrestling because I'm like, what just happened here?
Not sure what's going on. How how So
Let's take the last wrestle. Yeah.
How the Diabetes Is Going Now1:18:32
Yeah. Amber, let's take the last minute or two here. Like, how is the diabetes part going right now?
It's it's going a lot better. Like, even during all of this, he was I didn't even mention impulsively taking too much insulin. So we were having issues with if, like, he got mad. All of a sudden, I'm like, I know he just took too much insulin. That was a big issue, but he's not even doing that anymore since we got everything straightened out at school.
I just think he was so overwhelmed with everything. He does a great job. He's very independent with his management. I help him as much as I can, but, like, he doesn't wanna put the infusion he doesn't want me to put the infusion set on or his Dexcom. He wants that.
I'll fill up the cartridges. I'll unwrap the Dexcoms, you know, like, get everything ready, and he just, like, applies it. Mhmm. But if I'm not here, he'll put it on, like, no problem. He doesn't want high blood sugars, so sometimes we we have an issue with him overcorrecting, which I've heard that he's not alone in that.
So we're still working on that. But, yeah, he he's very active in it. I just hope that he doesn't, you know, rebel against it one day. I've been trying really hard to not come off as, like
Lording
over Yeah. Yeah. Or anything. Just, give him any bad feelings towards it. I kinda try to tell him it's like brushing your teeth, taking a shower.
You know? You just
Yeah.
You change in your pump site. You know? It's just another part of your your routine. Right. You know?
Everybody's routine can be a little bit different depending on
Situation. The
things they have going on. Amber, you I just
You're doing a good job. Don't? No. I mean, gosh. It's a it's a lot, and you're I think you're doing a good job.
It's it's you know? I imagine it doesn't feel that way, but I you're trying. You're there. You're, you know, engaged. You're, you know, talking about it, trying to figure out other ideas.
It doesn't sound like you've given up. It's I I I just think it's probably a really long process that you're in the beginning of still And a lot of different factors, you know.
Yeah. I mean, you know, you know, we're trying our best and, you know, I try like, I love all the mental health series that you do with Erica, you know. Like, I try really hard. Like, at one point, he you know, I said to him, some something happened. It was a few months ago, and I'm like, I understand.
And he was like, no. You don't understand. And it, like, crushed me, but, like, I tried to change my wording with some of the things too because it's like, yeah. I understand from my point of view, not him and his point of view with diabetes, you know. So I and then I know that was talked about in the series.
Yeah. The language is important. You just have to you just have to say, like, I I don't live with the same problems you have, and I, you know, I but I am doing my best to to to to understand as best I can what's happening to you so that I can be as, you know, valuable to you as possible. Like, it is it is tough when you say I understand. People are like, you don't you don't know what you're talking about.
And I can see how it's crushing from your side to hear that because you're probably putting so much effort into trying to trying to absorb as much of this as possible.
It could be so isolating. I'd like I don't ever want him to feel like he's all alone in this. You know? Like, I wanna know as much as I can, so I'm here when he's frustrated as somebody who, you know, understands to some extent. You know?
Like because you know when somebody doesn't understand, you know, anything about type one, and you're trying to explain the same things over and over. So I wanna always be his support. So
Yeah. The best you can do is be there. I mean, I really do think that's most of it. Just be there so that he's aware that when when he wants you, you're ready, willing, able, excited to be involved. Yeah.
Yeah. And just try not to push. I thought that was good advice you gave yourself too. Don't don't push too much and but stay involved and it's a balancing act. It's it's not It really is.
I I had to learn a lot about control because, like, I there was a way I wanted to manage it for him. Mhmm. You know? And then there was singing of him and his emotions and, you know, and not just being, like, diabetes or, you know, like, even food related. It was like, okay.
You know? Okay. You wanna eat this? Okay. We're we're gonna figure out how to eat this.
You know? I don't want you to feel restricted because at first, you know, I I think, like, everybody does it. We'll do low carb. It'll be great. You know?
And it's like, okay. He really doesn't wanna do low carb. Let's do this so you're comfortable. And you're in control because it was it took a lot of control away from him, and he still wants
Right.
To feel in control as best as he can. So
Amber, I'm impressed. I really am. Because you could you could be in a significantly different situation right now, and your understanding could be a lot worse, but it's not. And you're you're doing a great job. You really are.
I want you that's what I'd like to end on is you knowing that this is long, it's hard, but you were doing a really great job. I would say stay on the course you're on, and I I think you'll get there.
Well, thank you so much. And I'm just so glad that somebody, you know, referred the podcast to me, like, just a couple weeks after he was diagnosed because it has just helped immensely in in so many ways.
I'm glad. That's nice. I'm I'm glad to know that. Thank you. You you made my day.
Of course.
Yeah. Oh gosh. I don't know what to say other than get back in there. Keep throwing your hands, Amber.
Yeah. Life. Right? I mean, it's a roller coaster.
You could trick a boy into helping you? I mean, I know that's not right, but could you?
Maybe one day, I feel like it's just it's another person to think about at this point. To get dating.
Yeah. My god. I can imagine dating you and being like, I don't know. I'm gonna go home and meet her kids, and you get home and be like, oh, I don't know what's happening.
Oh, yeah. It's a lot. It's a lot. I I I won't lie.
I won't lie. Oh my god. Oh, I'm so upset. What did I say we were gonna call this one?
Oh, something about cats.
Okay. Cat scratch seizure. There you go.
That that's adorable. I love it.
Thank you. Because I don't know what I I I love your mom's like, thought it was the cat having a seizure. Like, when that's happening, you know everything's upside down. When you think when you think cat seizure is a reasonable answer to the noise in your house Yeah. That's how you know things have gotten out of hand.
Oh my gosh. Yeah.
Oh my god. Okay. Alright. Let me let you go. Hold on one second.
I I need to talk to you before we're done. Hold on.
Okay.
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#1897 Face Your Face
Face Your Face
Three siblings, all type 1. After her identical twin — also type 1 — died, she's learning to be a ‘me’ after a lifetime as a ‘we.’
Jump to a moment
- A rare in-womb condition, TAPS (twin anemia polycythemia sequence), left the identical twins with very different vascular systems — Cassie’s vessels wide, her sister’s narrow and stiff. Because type 1 is hard on the vascular system, her sister faced compounded complications. TAPS wasn’t formally recognized until 2007; the family only recently found answers.
- Three siblings have type 1 with no family history of diabetes. Identical twins sharing DNA explains two; a third is genuinely unusual. Screening programs like TrialNet can flag elevated type 1 risk in relatives.
- Let the people close to you learn your diabetes. Cassie spent years shielding her partner from the “mental load” — until a scary low showed her that keeping him in the dark was the real danger. Loved ones who know how to help are a safety net, not a burden.
- Access and education shape outcomes, not just effort: decades across the Humulin/Humalog era, an insurance gap at 18, and — for her brother — type 1 inside a correctional facility (twice-daily fixed doses, no carb ratio, no glucose gel allowed).
- Grief, and “being a me after a lifetime as a we.” Twin loss is uniquely isolating with few resources, and medical trauma often goes unseen. What helped Cassie: therapy, the basics (consistent meals, sleep, water, sun, movement), and choosing to accept the gifts of survival rather than run from them — doing it, finally, for herself.
- Twinless Twins Support Group International — support for people who have lost a twin (verify URL)
- TAPS Support Foundation — twin anemia polycythemia sequence awareness (verify URL)
- TrialNet — free type 1 risk screening for relatives (verify URL)
- Bold Beginnings Series — for the newly diagnosed, with Jenny Smith (verify slug)
- Diabetes Pro Tip Series — foundational management series (verify slug)
- Juicebox Podcast Facebook Group — community around type 1 (verify URL)
- Juicebox Podcast — all series and free resources
Every word of the conversation
Three Siblings, One Diagnosis0:00
Friends, we're all back together for the next episode of the Juice Box podcast. Welcome.
I have type one diabetes. My identical twin sister had type one diabetes, and my older brother has type one diabetes.
Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. This episode of the Juice Box podcast is sponsored by Omnipod five. Omnipod five is a tube free automated insulin delivery system that's been shown to significantly improve a one c and time and range for people with type one diabetes when they've switched from daily injections. Learn more and get started today at omnipod.com/juicebox.
At my link, you can get a free starter kit right now. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox. This episode of the juice box podcast is sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514.
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Hi. My name is Cassie. I am here to talk about type one diabetes and siblings, address twin loss, and talk about a little bit of how twin to twin transfusion or taps can affect the vascular system and type one diabetics in the long run.
Cassie. Jeez. Becoming prepared.
I am prepared.
I feel like I'm gonna have to listen harder. Do people call you Cass?
Yeah. Some people do.
Do is those people people you like, or you prefer when people call you Cassie?
No. Cassie's fine. People close to me call me that.
Oh, well, not close to you. I can't do that.
You know what, Scott? I feel close to you, but unless I can do your podcast for a minute.
Oh, alright. Well, then if I slip into that, you you won't be offended. I appreciate that.
No. Not at all.
Let's start at the beginning. You have diabetes?
Yes. I have type one diabetes. My identical twin sister had type one diabetes, and my older brother has type one diabetes.
Wait. You are one of three children, all of whom have it?
Yes.
And do your parents have any autoimmune issues?
My mom has, like, hypothyroidism. My dad has arthritis, like rheumatoid arthritis. Mhmm. But we don't have any family history of diabetes.
Okay. No type one that you guys could find in the extended family? No. How about the brothers and sisters? Did you guys have anything other than type one?
So my sister, she had a slew of things. She had all kinds of mysterious illnesses along the way that took us a very long time to find answers to. My brother, he's pretty healthy. He's type one. Other than that, he's had a few complications with the type one, but overall, pretty healthy.
Okay. How old are you?
I'm 32.
32. Is your brother older or younger?
He's older. He's 35.
Losing Her Twin3:32
And then I guess I have to ask you, how long ago did your sister pass away?
So it's actually gonna be five years on Friday.
Oh my gosh. I'm sorry.
I know. It still feels like yesterday.
I was gonna say, is the difficulty got lessened at all, or what's it like knowing that it's coming up on Friday?
I would say the difficulty, it has lessened a little bit, but it still kinda feels like I'm right there. Still kind of in that same headspace, that same day five years ago. And every year, this time of year comes around, I start feeling a little off, and I'm like, what's wrong with me? Yeah. And then I'm like, oh, well, this makes sense because your body remembers.
Yeah. Hey. Are you were you guys identical twins or fraternal?
We're identical.
Can I ask a really difficult let me ask the difficult question in the first three minutes? Okay? And then we'll we'll get through this. Is what's it like to look into a casket and see somebody that looks just like you there?
So she was cremated.
Okay.
So I didn't particularly have that experience.
I feel like I'm glad
for you. Was with her when she passed.
Yeah.
And it was a strange moment because I knew. Like, I knew the exact moment she wasn't there anymore. I guess maybe, like, the equivalent to seeing her in a casket is maybe even just looking in the mirror Mhmm. And having other people, you know, telling you, oh, you look you look just like her. Seeing you, it reminds us of her.
It's it's a little bit of a tricky one.
Yeah. I was gonna say. Right? Because there are people that miss her that see you. Right?
Yes. And I'm still close with a lot of people who are close to her, her husband who took very, very good care of her along the way. We've been friends since high school, so he's still a pretty active member in my family. Mhmm. And then some of her friends, I'll catch here and there.
And then I come from a very large female dominant family. We're all very close, and they're a huge support system.
I'm glad. Yeah. Did she have children? No. Okay.
Do you find that when you're like, when people who miss her are in your presence, does it bring them comfort or sadness, you think?
I'm not sure. I would imagine it would probably make them a little uneasy because I feel like it would make me a little uneasy.
I mean, yeah, I feel there's an entire conversation just in this part of your story right here. Is it a thing you think about much, or are you right now going, why is this guy who makes a diabetes podcast digging into my psyche?
No. I I think about it waking up in the morning. I think about it when I go to bed at night.
Yeah. I would imagine. Oh my gosh. Okay. Alright.
We're gonna get past this part, but I cannot guarantee we're not coming back to it. So are you diagnosed at what age? You?
Diagnosed at Three, in the Humalog Era6:35
I was diagnosed at three and a half. Oh. My sister was diagnosed at three.
You were six months after. Apart. Yeah. Yeah. Mhmm.
And and your brother before or after you guys?
Quite a bit after. He was 12 years old. We would have been about nine.
Okay. You were not so maybe three years after you were diagnosed?
Six years.
No. Say I'm sorry. You were you I'm sorry. You said you were three when you were diagnosed?
Yes. I was three and a half. My brother was 12. Would have made my sister and I about nine or 10 when he was diagnosed.
Gotcha. I'm sorry. I I lost one of the steps in the math equation there
for a minute. That's okay.
I really did. I was like, what happened? Why did I get so confused? My gosh. So your mom raised two, three year olds with type one.
How long ago?
So we were diagnosed in '97. So this is before Lantus and right in the era that Humalog was approved. So we're talking about, like, the Humulin n, Humulin r era Yeah. Of insulin.
Thirty years ago, maybe?
Yeah. Yeah. Just about thirty years.
Yeah. Wow. Wow. Wow. Okay.
Did she look crazy by the time you were in high school? Did you look at her and, like, think like that lady needs to go for a walk and sit on a beach, or how did she manage it?
A 100%. I have no idea how she managed it. You know, in one of your podcasts a little while back, I think it was Behind the Cheese, you were saying how you think you could sneak in and change a pod out on your daughter without her noticing. Mhmm. And there was a lot of that.
There was a lot of sneaking into the room at night and poking fingers, checking blood sugar levels, trying not to wake one of us because if one of us woke, the other would wake. So I can't even imagine she pretty much did it on her own.
Oh, what a great title for an episode, Behind the Cheese. Is that where they kept the insulin?
Yeah. Yeah. That's awesome. Think that was an older episode. I just listened to it, though, and really enjoyed it.
Honestly, it's one of my skills picking the title. But I have so few marketable skills.
That's a good one. I
Cassie, I just the other day thought to myself, I have to keep this podcast going. I don't know what else I'm qualified to do. I'm too I'm I'm too young to retire, and I'm too abjectly unqualified to do anything else.
Well, the community needs you, so you're gonna have to keep the podcast going for the rest of us.
You're very nice. Thank you. It is really my
Sorry to not give you a choice.
Oh, I don't I don't mind, actually. I I would like to. It's just the fear of how it's I don't wanna I'm not gonna go down this road, but, like, you know, my thing is is held up by a social media structure that is just, I don't know, nebulous. It's hard it it's hard to understand how it works. It's hard to understand when it's gonna shift.
And it just it feels like I don't know. I I really don't know how to put it. It just feels like I'm cruising along on a nice calm ocean. And somebody said to me, we can just keep doing this forever or maybe a, you know, a tidal wave will come and just knock you over and you'll be gone. And you won't see it coming and that'll be the end of it.
And then that that beautiful boat you had, we're we're not getting that again. Like, that's the that's the anxiety I live with around around this work, but that's not the point. The point is is that I'm unqualified to do anything else. So you're Well,
I'm sure the I'm sorry to interrupt
You're not interrupting me. You're a good conversationalist, and I'm not used to that this early in the episode. So go ahead.
I'm sure the uncertainty of that is pretty scary That's all I was gonna say.
Thank you. It really is. I don't wanna complain because, you know, people take holes for a living and things like that, and it it's unseemly. But I do worry about it. So your mom is raising two little girls with type one.
Your brother is probably just off on the side going, man, I dodged one here, didn't I? And then it hits him. So when it gets to him, what's your remembrance of him being diagnosed?
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A Diagnosis in the Mountains12:31
So, actually, I remember a lot because we were in a pretty precarious situation because we were camping out in the Blue Ridge Mountains
Yeah.
When he started showing symptoms, you know, being thirsty and using the bathroom a lot. Because of my sister, my mom was able to identify the signs pretty early. So I didn't go into DKA yet diagnosis. My brother did, but mainly from lack of resources from where, like, we were at. Yeah.
So we were so far away from a hospital. I think it took us maybe three or four hours to get them into a hospital. Oh, came on a hospital.
Yeah. Okay.
And then we were in a hospital that had maybe a 100 rooms in it. It was very tiny in the middle of nowhere.
Oh, gosh. Blue Ridge Mountains, is that Tennessee?
I think that's Virginia.
Virginia? Okay. Once I move south Virginia. Cassie, once I move south, I'll know all this. Don't you worry.
I'll blend right in. At the moment, I live in the North. I have no idea what I'm talking about. So you're up in the mountains. You get to there.
He's already in DKA.
I'm not completely sure. I think so. He was showing the symptoms and the signs. Sorry. Excuse me.
You're fine. He looked I remember him looking very pale and almost a little gray, and he was very agitated. And who could blame him? He felt so awful. And then there was, like, a lot of drama around the campsite with my cousins, and they're bickering.
And he was bickering with people. He didn't feel good. And then it just kind of, like, dawned on my mom. Like, oh, shit. This is what's happening.
I've seen this before.
Have you spoken to her since as an adult? Was she waiting for the other shoe to drop once the first two got it?
I think I think she probably was. I know there's some kind of testing you can do to see if there's what is it? Like, the gene or
Yeah. There's it's like
Something like that.
There's a number of places that do it at this point. I think JDRF does a trial net. There's a bunch places you can get tested to see if it's likely that you could possibly get it.
Yeah. And they've been doing that with his with his children. I think, like, with the two of us having it, it was almost a never pro, like, being identical twins. Our DNA is identical. So that makes sense.
Having a third child in the family, that's a little unique.
Oh, it is.
It just means that Jean must have been extremely strong.
How old's your mom?
Along the line. She is 63.
How would she be on a podcast?
I think she'd probably be pretty good.
Yeah. I I think I might be interested in talking to your mom Monday. That's a that's a pretty a pretty unique situation. Right? Like
I'll let her know.
Yeah. Please. And if then there's no pressure, obviously. But okay. Okay.
So would you consider growing up, the three of you with type one, was it manic? Was it insane, or was it so part of the of life that it didn't feel different or odd?
Trading Insulin From the Couch Cushions15:31
It was manic. Definitely a little insane, but I think that was almost normal for us because we were also adapted to it. And I remember, like, running around and trying to dig insulin out of, like, couch cushions and stuff because we were all trading insulin vials based on who needed what at the time, and stuff would go missing. And then somebody needed their Lantus or someone needed their Humalog and didn't have it. And they're going to the fridge and taking somebody else's prescription.
And it just got really wild for a while there.
Weird question. A lot of times, I'll talk to people where the siblings who don't have type one feel left out. Left out is the wrong word. They feel probably like they're like they're they're sibling with type one is getting more attention. But when you all have it, does that feeling still exist?
Like, if you if I said to you right now, your mom's favorite was do have an answer?
I would say my sister. K. They were just very close and seemed to function a lot on, like, the same wavelength. I think that probably that feeling still existed for him just outside of the fact that he had twin sisters. Mhmm.
So there probably was a part of that that was a little isolating. That may not have anything to do with the diabetes itself.
Do you think your sister thought you or your brother was the favorite?
Maybe. I was, like, a little bit more introverted than my siblings.
Okay.
Like, hung out in my room a lot by myself. And so she was just always a little more social than me. And my brother, he's pretty he's pretty introverted as well, but he's also pretty close with my with my mom. They have their issues, of course, but she might say my brother.
Yeah. Ain't that funny? I wonder what your brother would say.
I know. I'm curious. I should ask him sometime. I
just think it's it's incredibly interesting because we we've when the conversation happens, the idea is, well, because that one has type one, this one feels like you're paying more attention to them because of their type one. I'm gonna tell you, I just think this is how kids feel. And you need a you need a thing to call the reason when you when you say, well, mom's nicer to that one or this one or whatever. Like, or dad does this instead of that one. Dad's I I guarantee you if you pull both my kids in here right now, put one of them in a soundproof booth, ask the first one, you know, do mom and dad have a favor?
They're gonna say yes. It's not true. Yeah. They're gonna say, do you get treated differently than the other one? They're gonna say yes.
It's not true. And, yeah, vice versa. They're both gonna think it was the other one. Fascinating. So I don't know.
I didn't feel like that growing up. But I had
all Yeah. We
I don't know.
Had the conversation actually not that long ago, my mom and I did, around, like, favorite kids. And she was telling me, like, you know, the favorite kid thing doesn't really exist, but there is a certain level of, like, compatibility and interest with some of your kids that maybe you don't have with other kids.
You know, like, your personalities match more.
Yeah. Yeah. So it's a little more that than actually having a favorite. They're still appreciating the differences, but the compatibility kinda makes a difference.
Yeah. Yeah. Both of my kids are a pain in the ass and really fantastic, so I don't even I wouldn't even know how to judge them that way. I'm sure they think the same on me. Probably like he's a pain in the ass.
Okay. So pumps, trading insulin, general craziness. How about health and outcomes? Is there goals back then? I mean, in the fur let's cut it into the first ten years.
The first ten years, is it just about staying alive, or are you trying to hit numbers?
I think it's more just trying to stay alive. My sister and I did not go on to a pump until we were a bit older when technology was a little more advanced. I think maybe we were 18. My brother to this day is not on an insulin pump. He still does multiple daily injections.
Mhmm. He has the CGM. But the first ten years, I think, were a lot of survival because I think trying to have the standard of keeping three type one diabetic children on your own in perfect control is just impossible. It's impossible with one child, let alone three.
No. I can't even I can't even imagine the the the the letdown you must feel in yourself as a parent when you look over and one of the kids has a blood sugar. You're like, okay. That's what I was shooting for, then the other one doesn't. And you probably feel like, oh, I let that one down.
And then you start doing the the thing in your head about the health and long term outcomes. And I don't your mom must have been out of her mind. I would've I might have been too. You know what I mean?
Yeah. I think I definitely would be because I have enough trouble, like, managing my own. I can't imagine having that kind of responsibility for somebody else's
Yeah.
Life, let alone your own, like, child.
For sure.
And then having multiple children, I just can't imagine how difficult it was. And it just it makes me realize how much of, like, a Wonder Woman she is.
Yeah. No kidding. Right? Well, do you have kids now?
Why She Hid It From Her Partner21:11
I don't.
Married?
I do have a partner. Yes. He I kept him very uninvolved for quite a while because I didn't want it to be a burden for him or anything he had to worry about.
Yeah.
Let me tell you, I don't think that's the way to go.
You should've let him in sooner?
Yeah. I think your partner definitely needs to have a certain amount of education around your diabetes because we've been in a few situations in the past where it was a little like, what do I do? Because I never taught him because I was so committed to not making it his problem. We've been together for nine years, so he's definitely learned a lot. That was probably, like, the first five years.
He's definitely starting to learn, and he does help me when I'm really, really burnt out or overwhelmed, you know, changing your pod at three in the morning or a sensor fail when you're out swimming. Or he does help me in those really stressful situations.
Well, I mean, imagine being in a in in a an emergent situation, you and your partner, and you're trying to help them. You don't have any idea of how to do that, and they're not able to tell you. But that must be a a feeling of lost and out of control that that's unmatched, honestly. Right? Like like if somebody yells, does anybody know CPR?
And you're the only one there, and you're like, nope. I don't. Sorry. You you know, and then somebody's standing there choking in front of you. Oh, my gosh.
So tell me a little more about why you kept it from him for a while. You you I mean, was it about I want this guy to like me, or I don't want him to feel like I'm a burden? Like, can you put words to any of that?
Yeah. It was really just I didn't want him to have to take on the mental load. It's, you know, the every hour, every minute disease. That's a lot to put on somebody else. And I was very committed to making sure that that wasn't going to be his problem or his worry or his issue.
And it really wasn't until the first scary low blood sugar where he didn't know, do I give her carbs? Do I give her insulin? That I was like, okay. So, actually, this is dangerous to our relationship, and it's time to do some educating.
Yeah.
So then we've really taken a different approach in the last five years, and he's learned a lot. Luckily, I'm pretty I'm pretty stable. Both my brother and sister are awfully brittle. I've never been in DKA. I've never had a low blood sugar seizure.
I've been very fortunate. Mhmm. So I kind of just thought I could keep pushing on that way, and there wouldn't be any problems. Do you do you have fooling myself.
You foolish. Yeah. You you you're not dodging this one forever. Like, you have to I don't know. I'm a proponent of just the people around you should know how to help you.
And not just a little bit, but really understand to their best of their ability. And I also don't have type one. I don't know what I'm talking about, really. Like, I'm just, you know, talking from an academic space. But, yeah, I mean, you do not wanna be in a situation one day where you really need help and the people around you who really wanna help you don't know how.
I mean, imagine if you if something dire happened and those people are now left with the idea that, oh, I was there and I couldn't I couldn't help. Yeah. It's it's I don't know. There's a lot to it, honestly. You should think everybody's gotta think of throwing their own and decide what they think.
But also, sometimes people have others around them that are not excited to help or maybe even good candidates to help, which can happen as well. But what I wanna understand is three different people, three same household growing up, you gotta make it through no Lantus at first, eventually get into pumps, insulin getting better, all that stuff. But the three of your cares probably don't end up blossoming the same way. Right? That's where it becomes pretty, I would guess specific to your personality, your drive, and your desire.
So how would you characterize your personal care versus your sisters versus your brothers?
So that actually kinda takes me into, a few things I kinda wanted to address, which, as you know, type one diabetes is not a, like, same situation for every type one diabetic. It's completely different in each person, and not one case is ever gonna be the same. And that even applies to, like, my sister and I as identical twins. You would think we would have similar scenarios, situations that our whole process would be similar, but it just wasn't. It was very different for both of us.
And I think that kind of goes back to, our birth, actually, because at the time, it wasn't a diagnosis, but we had something called TAPs, which is twin anemia polycythemic sequence. Big words. Wow.
TAPS: An Unequal Start26:04
I don't know what that means at all. Go ahead, please.
Yeah. Yeah. So pretty much what it means is that while we're being developed in the womb, our shared blood vessels became unequal. Where hers were much smaller than mine, and I was getting too much blood being polycythemic, and she wasn't getting enough being anemic.
Okay.
So your blood vessels in those situations as you're developing, they develop that way. So her blood vessels were developed small, narrow, and stiff. And as you know, type one diabetes is really hard on your vascular system. So she really just had double the challenges that maybe I did with more open and I almost had a safeguard in my in my vessels from scar tissue.
Because wait. So you had more than you needed, and she had less than she needed, basically?
Yeah. So it just, like, developed unequal
Yeah.
Where I was just getting too much blood, and it was thick like syrup, and she was just very anemic. What's the impact happens in twins.
It happens in twins. Don't let me stop you. It happens in twins.
So in '93, when we were born, haps they didn't know about haps until 2007, but they knew about twin to twin transfusion syndrome, which is kind of similar, but it's more acute. Big vessels transfer fluid and blood from one twin to the other, but it happens pretty rapidly. Where TAPS is more chronic, it happens early on, and it goes on throughout the pregnancy, and you develop that way. Mhmm. So they thought at the time that we might have had the twin to twin transfusion.
We didn't meet all the criteria, so we were never formally diagnosed. And then later, when they discovered taps, we met each criteria for the taps.
Jeez. And is there anything that they were able to do for either of you?
So I was very sick. My blood was too thick. It's really hard on your heart and your lungs. So immediately, I was my heart stopped pretty quick. They did.
A little CPR came back very quickly, and they put me on a ventilator. They tried traditional medications to help with my lung product like, getting my lungs to function, and that didn't work. And they pretty much were like, you know, it's in God's hands at this point. But they tried an experimental treatment for the lungs, and that did work. So I was on the ventilator, I think, for about six days.
They didn't move or touch me for the first two weeks because when they would touch me, my blood pressure would skyrocket, which is dangerous when you have thick blood. They were still doing the blood transfusions.
Oh, wow. So You just laid there?
Yeah. Yep. For about two weeks, and then they fed me for the first time, I think, at at that two week period.
Gosh.
What So for the
Can I I'm gonna stop you for half a second? You and your mom ever talk about this as adults?
We actually just recently did. Some of this is rather new, information that just wasn't out there in '93.
Yeah.
They're still kind of figuring out long term effects on pap's babies and the, like, lifelong effects that that has on on someone.
Mhmm. Brain injury, stuff like that can come. Right?
Yes. Is it So slow processing time. They're finding there's a link with caps to ADHD and organ. You can have issues with your organs, especially in the anemic twin
k.
Who had the lack of oxygen in their blood
Right.
Can cause long term deafness. There's there's a few long term issues. We didn't present with all of those, but it definitely structurally rebuilt our vascular systems very different.
Her Sister's Harder Road30:55
And then describe to me if you can, growing up through life, the issues that your sister had, any that you might have had.
So we were both diagnosed with hypothyroidism when we were, like, nine. We were pretty young. And then just anytime my sister got sick, she got very sick. And we'd both get sick at the same time. I would bounce back much quicker.
I just overall had a stronger immune system.
Mhmm.
And then into her teenage years, there were just these body aches and flare ups, and she'd get a virus, and it would be almost deadly to her as viruses are with type ones. They're scary. But everything affected her much heavier than it affected my brother and I. And that going into our early twenties, stuff started to get really kinda scary for her with her her blood vessels. She just had very poor circulation, which that combined with type one diabetes is a scary combo.
Yeah. Yeah.
She had sepsis three times. She had three strokes. She just really went through the ringer.
Three strokes from just the the limited blood flow, and do do do they know why?
One of them was from a clot, like, a scab. So she had a fall, and she hit her head and damaged some of the vessels. I guess they scab over. That scab can release and then cause a clot in the brain.
Jeez.
So I think that was her third stroke was from that. And I'm not completely sure what the first two what the first two were from.
Mhmm. In that time, into your early twenties, what would you say your diabetes outcomes were like? Do you know what your a one c's were or what you know, how you treated your blood sugars? Can you talk about that a little bit?
Yeah. So by the time well, our teenage years were a disaster. You know? You're going to high school and you are getting out of high school, and you wanna do what your friends are doing. You wanna eat what your friends are eating.
You don't wanna pull out syringes at the dinner table or when you're hanging out and you know? So our a one c's were garbage as teenagers. Into our early twenties was when we both were on insulin pumps and things got drastically better. I think my a one c was a 7.5, and hers was about a seven. So they were they were pretty decently controlled at the time.
On the pumps?
On the pumps.
You have any idea what a number would have been prior to that during garbage time?
Oh, 11.
Okay.
Yeah. They were garbage.
What? You were shooting were you regular on Miles per hour at that point? Did you go regular on Miles per hour to pumping?
No. We went from regular Miles hour. We did Lantus and Humalog, and then went on the pump about eighteen.
Okay. So even during Lantus and Humalog, what were you doing? Shooting the Lantus, but not shooting for meals all the time?
It was actually kinda the opposite Okay. Where the thing we would forget the most was the Lantus. And then we were in those kind of situations where somebody was out of Lantus and needed it, and we couldn't get it. And somebody had to, like, go to an ER or trying to get ahold of an endo in the middle of the night to see where we can find a twenty four hour pharmacy to get a prescription.
Cassie, is that is that a financial issue or just not somebody not handling ordering supplies correctly?
I think it's a bit of both. So my parents owned their own business. We didn't fall into the same kind of, like, medical insurance where you're on it until you're 26. So then at 18, I don't think any of us had medical coverage at 18. So there's a lot of programs out there where you could get a month's worth of insulin for $60 or but with three of us and my mom trying to find all these programs that can make it affordable until we could figure out, our next best step, which I don't know the nuances of it all.
No. Would you describe for me what the financial situation in the house? Would you have called yourself poor, working class, middle class, upper middle class? What do you what were you?
Middle class. I I would say, you know, I don't not so sure the classes really exist anymore. But
No. There's just two now. Yeah. But go ahead.
There was a lot of times where it was, like, money was doing really well. Mhmm. And then there were times where money was doing really bad.
Little feast investment kind of thing going on. Like, the business would do great. We'd do a little better. We're going on vacation. Everybody's eating, that kind of stuff, and then it goes the other way?
Yeah. Exactly.
What kind of business? Like, not the name of it, but, like, what kind of work?
They do, like, audits and pre OSHA inspections for, like, construction sites and schools, that kind of thing.
Okay. And do do your parents oh, your dad's alive still or your mom? I know your mom is.
Yeah. They're both alive. I'm pretty estranged, like, from my from my dad. We don't have much of a a relationship just from stuff growing up. But they still own the business together and run the business together.
My brother's also working there.
They're married still?
Wanna work with family. No. They're not.
They're not married. They run the business together. Yeah. Wow. That must be fun.
Oh, yeah. A lot of fun.
You you you But and now listen. I can't imagine that if you're estranged from your father, I can't imagine your mom is okay with your dad. Is that right?
I think she sticks around for my brother.
Her Brother's Addiction, and Prison Diabetes37:23
For your brother. And there's a part about your brother that we haven't talked about yet. Right? Is he he has he struggled in other ways?
Yeah. He struggled with addiction for quite a few years. He'd have these time periods where he'd be clean for six years, like, in between, and you kinda get that feeling like, okay. Everything's gonna be okay. Mhmm.
Like, everything's okay now. And then his last stint of addiction, he did end up going into a correctional facility. He was charged for drug trafficking and possession of drugs, and his care in there was just it was just awful.
Yeah. I've only interviewed a couple of people who have been in prison with type one, but it doesn't seem like it's set up for success. That's for sure.
No. They checked his blood sugar twice a day, 7AM, 04:30 in the afternoon. They'd give him insulin before they knew what he was gonna be eating. So there was no carb ratio put into place. They were still doing Humulin and Humulin r, which everybody knows is very old school.
It might keep you alive. It's not gonna prevent complications. And he developed retinopathy, neuropathy. He had five or six different low blood sugar seizures.
Yes.
He had to provide his own low blood sugar treatment from his commissary.
Oh, they didn't they didn't see that as medication?
Apparently not because they wouldn't give him glucose gel because of the high sugar content. They were afraid people were gonna use it to make alcohol.
Oh, I guess there is a different set of concerns in prison. Am I so your parents are running this business to give your brother a place to work and to help themselves financially. Is that right?
I think they started it together, and they both just love it. Like, it's their baby.
I see.
They both grew it from the ground up. It's been what they raised us doing and what they bought their house doing. And I think it just meant so much to both of them
They wanna lose it.
That neither one of them could walk away. But now that my brother is so heavily invested in the business, I think my mom's a little hesitant to walk away as long as he's still there.
It's providing stability for him.
Yeah. A support system, I suppose. Mhmm. Hard question. It's tricky.
Yeah. Yeah. Hard question for you. Okay? Your sister's really sick most of her life.
She's a lot I mean, a lot of issues and passes away. You all three have type one. Your brother had addiction issues. Do do you have any idea what was it the stress of all that that broke your parents up, or do you think it was something else or a mixture?
I think it could be a combination, but I think a lot of the issues were going on before the the diet.
Yeah. I didn't mean that they were the Brady Bunch, then you guys got diabetes. That that's not what I was saying. But but I but you think is it a I don't know how to ask this. Like, do you think that the the thing hey.
There's no way for you to answer this question. I don't know why I'm asking you, but I'm gonna finish it now because I started. Their collection of issues without three kids with health issues, do you think they would have been okay?
No. I don't.
No. They were they were on their way about it.
Their outcome probably would have been about the same with us in the picture or us not in the picture. They were just other things going on that I think made their separation a little bit unavoidable.
Gotcha. I heard I heard what you said. I think I know. I'm not gonna guess out loud, I think I got it. Sorry.
No. That's okay.
No. I mean, I I grew up in a shaky household too, so I I'm sorry for you. My god.
I know. I'm trying to tiptoe because I don't wanna hurt anybody's feelings.
Of course. No. You're doing a good job.
At the end of the day, you know what? This isn't really about them. This is about me sharing my story.
So Yeah. It's your life. You know? They were they made themselves characters, and the the kinds of characters that they were, they could've they could've made themselves different characters. You know?
We all could. We could all do that. Wow. Okay. So when you go to a pump and your a one c comes down to the sevens, do you and you're in your early twenties.
Are you in college? Are you working? Where are you at in your life?
Oh, I started the pump at 18, and, actually, they would not put me on the pump until my a one c was a seven. They said if I couldn't get my my shit together or under control, that a pump wasn't gonna make the difference. They wanted to see I could do the work first, which now makes absolutely no sense to me.
I come down on the side of that's wrong, but go ahead. Yeah.
But this was the older generation of endos, very scare tactic oriented, you know, would come in with a picture of, like, somebody with a missing foot or a a eye and be like, know, do you want this to happen to you? Mhmm. The old generation of endos were a little harsh. Glad that there's been a big shift in that and a big change, but I did I did the work. I really went to work with the multiple daily injections at 18 and got onto the pump, and it just made a world of of difference.
My sister very shortly went on to the pump right after me. So then we both were in pretty good condition with our diabetes at the time. I was in training to be an EMT. I was doing trades at the time. Mhmm.
Never felt like college was gonna be a good fit for for me because I struggled a bit in high school.
Mhmm.
So then I was like, you know what? Let's give trades a try. So that's what I was doing at the time. My sister was very sick at the time. She was working part time at a greenhouse.
She loved plants. She loved plants. She loved gardening. That was, like, her whole life, being in the sun. So that's kinda where we were Yeah.
About that point.
Getting Serious — and Every Pump There Is43:50
What made you serious about it? Like, why like, how could you if someone if you say, I'm gonna get a pump, and they go, no. You're not getting a pump until you lower your a one c by four points. What makes you what makes you do it? Like, how did you accomplish that?
You know what I mean? Like, something had to change in you that make you wanna do that. Right?
I think I was moving out of I was kinda moving a little bit more into adulthood, and everything gets more serious. And they're like, oh, this isn't, like, a game anymore. Like, it's hard to be afraid of long term complications because you're not seeing them in the moment. Mhmm. But I just got so tired of feeling bad.
Okay.
And feeling bad became so normal. And then I was struggling to go to my classes, and I was struggling to do the physical part of my trades with lifting people and things like that. And I was like, I'm just kinda I don't wanna feel like this forever. And it just made me get a little more serious about it.
Yeah. I guess I don't wanna be trod, but you were sick and tired of being sick and tired?
Yeah. Exactly.
That's where that saying comes from. Okay. And so you buckled down, did what they made you do, got the pump, life got better, etcetera, so on?
Yeah. My diabetes has been pretty well controlled, like, since moving to a pump, and, man, have I tried all the pumps. I'm on the Omnipod now. Love it. It's been my favorite.
My a one my last a one c was a 6.5.
Good for you.
It's never been under a seven with any other
You're on me pumps. You're on the pod five?
Yeah.
Have you gotten the update yet for the 100 target?
I did, and I just did the update yesterday. Oh. And then I wasn't quite sure what to do from there.
Set your target to 100.
Okay. I was just like, does it just do it automatically? And then Hello.
It's thing. Thing. Are you doing it? Are you doing it, thing? No.
Go into
your go into your settings
and make your target 100. Why doesn't the thing know, Cassie? I mean, come on.
No. I told you. I'm challenged with technology.
I mean You you Cassie, had something happen when we were setting up. Let me tell them real quick. So when I'm trying to figure out like, sometimes people you know, it's very nice to people to come on here and do that do this, but, like, I don't exactly attract a crowd of people who are always making podcasts and stuff. So they cobble together, you know, microphones or headphones or whatever. And when I'm trying to see if they've properly turned their mic on that they're wearing or is, like, you know, their laptop mic being used, I'll often say cover the microphone with your hand because Cassie's voice was really dim and low.
And she covers the microphone with her hand, and her and her voice gets louder. And I'm like, wait. What what's happening? And she's like, I'm challenged. But but, no, seriously, like, yeah, move your do you know where your target is now?
Yeah. I think my target is One the one yeah.
Okay. Make it a 100. I'm I hear from people who are using it that it's a it's a it's not just the target that they changed. Some other stuff got changed too, And people are seeing a real difference, so give it a whirl.
I'm definitely going to. I was, like, trying to gather notes for for today so I didn't come in here and talk about, you know, my own stuff and sound like an idiot talking about my own stuff. And I was like, that seems like tomorrow's issue.
Isn't it? Isn't it hilarious?
Do that tomorrow.
You say to somebody, like, what's your basal rate? They go, I I don't know. I'm like, well, if you don't know, who knows? Right. Yeah.
No. But seriously, I would also, let me say, not medical advice. I'm just saying I would move it if I was you. And while we're dropping in disclaimers and links, omnipod.com/juicebox to learn more about the Omnipod five. Please support the sponsors.
Links in the show notes. Links @juiceboxpodcast.com. Okay. Now, Cassie, we'll move forward. Yeah.
Part of the thing we talked about earlier, I have to I will I will say this. I don't I'm gonna use the word hate for a second. I don't hate that there are great companies that support the podcast. That that's fantastic. I wish that it wasn't part of my life to have to remind you all that if you don't use those links, if you don't download the show, if you blah blah blah, then I can't keep it going.
And it because it sounds like crap. I know it does. Like, I because I've heard people who make YouTube videos, podcasts, etcetera, they say the same thing. When they're saying it, my knee jerk reaction is, oh, shut up. Like, leave me alone.
Like, that's not gonna make your podcast fault. It will. Like, it absolutely will. But it's a hard thing to hear from a listener position, I think, because I don't have a good reaction to it. And yet I find myself saying it, which is I don't know if that's an oxymoron or not, but I feel like a moron when I'm doing it.
I can tell you that much. Okay. So we'll get your we'll get your goal down your target down to 100 and the Omnipod five. You said on the other pumps, were never able to get under a seven?
Yeah. I would say the closest I got was exactly a seven, and that was with the t slim. And I really thought for a while that technology couldn't get better than the t slim IQ control closed loop system Mhmm. Because it was so life changing to me. I went on the the t slim after I was on the Medtronic, you know, with the Guardian sensor.
Yeah.
I hated the Medtronic.
You did it all. I
did. I started on Animus, and then went to Medtronic, then went to the t slim, and then I tried that new pump, the the bionic pancreas Did you really? On that.
The beta the islet?
The islet, and that tanked my timing range. I went from 80% down to 55% on that one with
the six that for? Six months.
I gave it a year. A year? But after a year, I just, like, finally told my endo, like, I can't I can't do this. Like, it's not working. And he was able to write to my insurance to be like, yeah.
The warranty thing. Like
Yeah. We'd like to switch back, please. That's crazy. Yeah. Well, they're not sponsored, so I'm okay with that.
No. I mean, I'm just joking. I I think sorry. No. Don't be sorry.
I think that first of all, I think that all of the of the pumps that are are represented here on the podcast by by ads, they weren't they weren't just taken because they weren't interested in making ads. I think they're all very good pumps, and and I believe they do a good job for people. I do wonder just Yeah.
Finding the one that works for you.
Yeah. What works for you I would also guess too that your knowledge of diabetes has gotten better over time. Like, I would Yeah. I hope so. Yeah.
Right? Like, so have you been listening to podcast for long?
I started listening to your podcast, god, probably about a year ago. It hasn't been been crazy long. I know you've been doing this for a while.
Mhmm.
I listened to one not that long ago. That was from 2018.
Oh, I've been doing this for twelve years. The this, I guess, started
in long time.
2015. Did it start in 2015? Yeah. In January. But my point being, is it possible that over like, watch.
How long you've been using Omnipod five?
I've been on the Omnipod five for only about eight months, I think.
Is there an argument to be made that the podcast is the reason you're doing better? I don't wanna take anything from Omnipod. But is
The Podcast as a Support System51:42
there No. I I do think that because not only did I keep hearing people talk about the Omnipod five, I found people who learned how to use the Omnipod five through your podcast.
Okay.
And then I one of my best friends is also a type one diabetic. She lives in Florida, and she's been on the Omnipod for years. And for so many years, she kept telling me to do it, but I was so attached to my t slim.
Mhmm.
It was like, nothing's gonna get better than the t slim. And then finally, I gave it a go and was like, this is the best pump I've been on. I've been on them all.
Awesome. I'm gonna go out on a limb here and say something I don't have any idea if I'm right about or not. But I bet you if today Cassie wore the t slim pump, she'd have a six and a half a one c. And I bet you if today Cassie went and wore the seven eighty g from Medtronic or is it MiniMed or Medtronic? I mean, you guys you got.
If you go wear the MiniMed seven eighty g, I bet you'd have a six and a half a one c. I bet you're just better at it now. I would also argue that people who listen with some consistency stay stay engaged with their diabetes without feeling focused on it. That's the that's how I hear back from a lot of adults. When I listen, I just do better.
I couldn't possibly tell you why. But I also don't find myself thinking about it more. I find myself thinking about it less, but doing more. I don't know if any of that, like, resonates with you. But
No. It it does. I think in the last year, something that I was always a little bit, like, you know, it's not that important was pre bolus. Like, I used to always kind of bolus be like, oh, yeah. I'm gonna eat in, like, three minutes, and I would bolus then.
And now I really make sure to take the time to do it twenty minutes or fifteen minutes ahead of time, and it it really just made a world of difference.
Yeah. And that's from the the podcast.
Yeah.
Alright. I don't wanna break Omnipod's heart, but, obviously, I'm the one that fixed this.
Clearly. Scott gets the credit here.
I mean, really, it was me. I get you. Also, now I realize when people say that I'm direct and that they find my confidence unsettling, I now know what they're talking about. But I don't see it I don't see it that way. What I see is that, like, very simply put, I've, in the past, tried to lose weight by myself, and I've tried to lose weight with support.
And with support, it goes better. And I've also tried to lose weight with support and assistance from technology, and what do you know? That even works better. So my point is that the podcast is a support system for you.
And it's Absolutely.
And you get dribs and drabs of information or ideas or concepts. You start applying them without even maybe believing even knowing that you are so much so that when a year later comes and you say, hey. What's going on? Why is your a one c a six and a go, let's say, Omnipod five. And and I'm telling you that I think those algorithms are all great.
Metronicdiabetes.com/juiceboxtandem oh, wait. Metronicdie yeah. And tandemdiabetes.com/juicebox omnipod.com. Just like That they're all they go find the one do. Go find the one you like the best, but know how to use it.
That's where the real success is gonna come from.
You gotta be honest about the Guardian, though. The Guardian sense
Oh, that old center.
Yeah. Well, there's a reason they got rid of it. They they don't make that anymore, do they?
It was pretty awful. I don't know. I, like, I don't know why they had so quick and never looked back.
No. So yeah. I mean, listen. I think I believe that the CEO of the company was on here and said that we called it the and when I said people call it the harpoon, she was like, yeah. Yeah.
Yeah. But I don't think anybody's saying otherwise. I will tell you you've never heard the harpoon? No. Okay.
Cassie, I would also tell you this. And I mean this, and I've been saying this for years. Anybody can look back and hear me say this because I'd make fun of Metronic because the thing was a harpoon. But they went first, and you gotta respect that. They made a CGM.
You know what I mean? And Mhmm. The insertion process was not great. And even the usability, you know, where you're, like, having to, what, you had to always put in the blood sugar and stuff like, it's not great. But it got everything going.
And now here we are, what, three plus Libre, g seven fifteen day, the Simplera Sync is the one that Medtronic has now and the other they have another one too. Right? Medtronic actually has two options now. The Instinct sensor, it's a fifteen day sensor. It's Simplera Sync that works with the MiniMed seven eighty g.
And now Eversense has their implantable CGM. Like, you know, respected Medtronic for going first. You don't first to the door is the one that gets shot. You ever heard that one? So
So I think, like, the closed loop system is really what changed the game. The closed loop system really, I think, is what came in, like, made life so much so much easier. Sure. I don't know much about the implant or if the implant works with the closed loop system yet. I like the idea of the implant.
It does scare me a little bit.
But you're But you're intrigued?
Of it. But I'm intrigued by it. Yeah. I definitely wanna learn more about that, and I have a little bit. I've also learned a little more into I've heard a lot about the twist.
Yeah. Twist Twist loop.
Months ago, I didn't know anything about.
And you love jumping around bombs, so it won't be long for you.
I know. I don't know. I'm pretty committed now. I love not having a tube.
I I listen. I I think that tubeless is a great option. A lot of people really like it. It's not a you know, but there is other companies making other stuff. You're gonna see a lot of things happen.
Also, I don't wanna seem like a show, but twist.com/juicebox has two eyes.
I walked you right into it. Oh, thank you, Cassie. I appreciate it. But I think
You want the same thing nice about Dexcom, US Med? Or the contour next gen?
You know, I've always wanted to try the fifteen day Dexcom. I haven't tried that
yet. Dexcom.com/juicebox. You're so funny.
Yeah. I think .com/juicebox.
Oh my god. You but listen.
What else can I throw?
I'm trying to joke around here, but I hope those of you who listened to me earlier look into this. Like, this is what it takes to keep this going. Like so if you're like, hey. The podcast is great. It's a like, listen.
You know what I mean? Like, it's a it's a ton of work and it's a ton of, like you have just you just have no idea. Like, I know it's easy to, like, flip on YouTube and be like, oh, look at that guy. He's probably making money or whatever doing this thing. It's a slog, man.
I mean, it's not it's not I used to work in a sheet metal shop. I'll do this any day of the week. Okay? It's fine. But the pressure to keep it going and the orbit around it that supports it and makes it possible for me to, you know?
I mean, you you have no idea about my day yesterday, but I will just tell you that I had to I had to start editing the podcast yester this week on my own again. And I've been head down at my desk eighteen hours a day or twice five days in
How's your neck feeling?
It's not. I actually walked downstairs with my wife, and I was like, my back is so sore. Why is my back so sore? My back hasn't been sore forever. I started complaining.
I was like, since I've lost weight, my back hasn't hurt my back right now. She's like, you've been sitting in that room for four days. And I was like, oh, oh, okay. So it's just, you know, I don't get outside. I actually had a moment.
I did a thing for myself yesterday. I I spent a couple of hours in the morning doing something I had to be in my car for, And this it was beautiful. The sun was out, wasn't humid, and I was, like, out in the world at, like, 8AM, and I thought, I haven't been outside at 8AM in forever. Like, this is this is nice, you know. I was like, anyway, I'm we're not here to complain about my life.
My life's fine. Point being, support the sponsors. And the pumps nowadays are all pretty great, and I think the next step is your understanding of how to use insulin, how the food is impacting your system, how did you make changes to your settings when you need changes to your settings. That's pretty much it.
Yeah. Well, it's a lot. It's just so much to learn and but, you know, it it's amazing how quick things are changing.
Oh, yeah.
Just I feel like every day, I'm reading something and I'm like, oh, that's amazing. Like, I was just reading about what's his name? Alec Alexander the tennis player?
Yeah. Yeah. Yeah. He won the US Open
the first yeah. He just became the first grand slam single title holder as a type one, like, breaking out there breaking records.
Yeah.
A lot of people on your podcast are out there doing really incredible things. Yeah. A few I was reading about or listening to, like, in the mountains, snowboarding, and just really out there doing incredible things that I'm not sure would be possible without a lot of the new technology.
Do you know a type one pilot's the space station, the International Space Station?
I did not know that.
Yep. She's been on here. She's very cool too. Her name's April. And, yeah.
Breaking records all over for type ones, and the technology really kinda makes that possible.
You watch baseball?
For us. I don't recently. I used to be really into baseball.
The, the closer for the Padres. Mason Miller? I think he throws, like, a 102 miles an hour or something like that. He's type one.
Yeah. Look at that. Like, just doing what other people can do. And I know there's some nuances to it with others who also have other autoimmune disorders. Yeah.
Makes it, you know, a little more
Challenging for some. Hey. Listen. My daughter's going to college with it. You
know? Yeah.
Her friend is in college. She has type one. They Arden has two friends in college with type one. And college isn't easy. And diabetes isn't easy and each makes the other thing more of a challenge and people are out there doing doesn't always have to be like I throw a baseball, you know, a 100 miles an hour or I, you know, I fly a space station.
I think it's, you know, a wide range of people who are out there just living life and doing a great job and, you know, trying to do better for themselves and while these technology companies are getting better. But your point about things getting better faster, I think that's incredibly exciting about around what kind of technology is gonna pop up. And and even so, the technology doesn't have to be the way we used to think about it, which is like, you know, you have to make a new thing. That's technology. Now the technology lives inside of the thing.
And that's much easier to update and improve and get out into people's hands. So I'm I'm expecting I'm expecting I'm expecting all the companies to keep going. Right? MiniMed, I think they're gonna make improvements to their thing. Twist, I would hope would bring out another version of the Twist loop, which I would imagine they're trying to do.
Omnipod six, I've already heard people talking about. Control IQ, they just got FDA approval for pregnancy. You know, on and on and on. That Senseonics, the Eversense CGM, the implantable CGM. You know, when it came out, it could be in for, I don't know, three months, then it was six months.
Now it's a year. Like, woo hoo. You know what I mean? Like, let's go. And that that stuff happened in much quicker much more quickly than I've ever seen in the past around diabetes technology.
Scared Straight: Living for Both of Them1:03:21
It's crazy to think where we're gonna be at in a year. I do kinda wish I could have seen how much this new technology would have impacted some of my sister's health issues. I know, like, her passing really kinda scared me straight as well. It was really like, okay. Major life changes need to happen.
How? What what what adjustments did you make?
I just started eating a very solid regular, like, diet. I stopped going through my weeks like, oh, what am I gonna eat for breakfast? I'm just figuring it out then. I started planning ahead of time my entire week of what I'm gonna eat for breakfast, lunch, dinner. I know exactly how many carbs I'm gonna get at those times throughout the week.
It keeps it consistent. It's helped me greatly. I've just started getting more physical exercise, getting out into the sun more, concentrating on the basics that people forget about, like diet, sleep, water, sunshine, that all make a major impact on our lives that we kinda push to the side. Like, oh, it's not that big a deal, but they're our baseline for functioning. And I quit I quit drinking soda, which I did only drink diet, but it's like, you know, I'll let myself here and there, but not every day like I used to.
Mhmm. And it just really got me into doctor's appointments more frequently and keeping an eye on things because there's always this baseline of, like, we're identical. What happened to her could happen to me. And things pop up where I'm like, she went through this, so it's happening. Yeah.
Like, it's starting to happen. I just had a real scary event with my with my kidneys where every time I get my kidney function checked, it's my worst fear to open it, and it'd be, you know, below that 60. And just recently, I kinda went through that, and I opened it, and it was 30 because I was on an antibiotic called Bactrim, which in some people can cause their kidneys not to filter protein or not protein, potassium. So then my potassium levels were really high, and they told me, like, go to the emergency room right now. And I was like, this is it.
It is it's happening. Like, this is how it started for her, and now it's happening to me.
Mhmm.
And this was just three weeks ago.
Cheers.
Within three days of coming off the medication, of coming off the Bactrim, my kidney function is completely normal again. All my levels were completely normal. It's just crazy. One time didn't
forget pause. You didn't forget the fear of it, though?
I didn't forget the fear, and the entire experience was a little triggering, and I would even say maybe a little traumatic. I think medical trauma goes a little unseen.
Oh, yeah. You start feeling like you're gonna Yeah.
Yeah. And there's just this constant reminder that I share an identical DNA with somebody that had a bad outcome. So it makes the everyday life a little bit different.
Can I tell you something that I found really encouraging about that little bit of your story? Is that I so often hear people say that they're doing things for other people, but I heard you say I'm doing this for me. And I thought that was awesome. Like, I really did. Like, I when you started talking, I was gonna ask you a question.
I was gonna say, do you think that you're doing it because you wanna be healthier, or you think you're doing it because your sister can't do it for herself anymore? But as you kept talking, I thought, no. Cassie's doing this for herself. Like, she's trying to pull her her stuff together. Good for you.
A little bit of both. Yeah. Because I feel the responsibility a little bit of living for for both of us. Mhmm. There is this whole trying to figure out how to be a me when I've been a we our entire life.
That's been very, very difficult. It's a very lonely process. It's a very unique situation to be in that there's not a lot of support for. Yeah. And nobody really understands unless you are an identical twin.
So now I have this strange tether where it's like half of me is wherever she is, and the other half is here. And that tether almost kept me stuck in one place for a little while. Still does a little bit. And now I'm kinda like, I have to do what she didn't get to do. I have to, like, live long enough and be healthy enough, not just for me, but for both of us.
Because moving forward as her other half, whatever I'm doing, she's doing.
Yeah. Death is an abstract until you experience a it's just a thing that you no one really I mean, we know we're going to die, but we don't think we're going to die. Do you know what I mean? Like, you do not walk around thinking like, oh, life's gonna end. And then someone's life ends, it it's impactful.
But when that person is your sister and looks just like you and shares, like you said, your DNA, boy, I'll I'm if this didn't do it to you, you called it scared straight. But if it didn't do it to you, then nothing was going to. Because, I mean, I can't Exactly. Oh, I can't imagine anything more impactful than this, honestly.
It has this strange bittersweet, like, thing to it where it's like, the worst possible thing that could have happened to me already happened.
Mhmm.
So it definitely pushes me forward with a little less fear and a little less anxiety on that aspect of it. There's also this aspect of getting to know myself in a way that I never had the opportunity to.
Yeah.
I never got to know myself as an individual, which
Interesting.
If I, you know, could go back and choose, I absolutely wouldn't. But that's been an interesting an interesting journey
Yeah.
Of really trying to get to know who I am as just me when it's always been us. And I miss it more than anything. I miss her more than anything. She was my best friend in the entire world. We shared so much.
When you grow up with someone the same age as you, literally from day one, you share the same kind of you learn empathy very young. You start to understand feelings very young as you're bouncing it kind of back and forth with somebody who's the closest person in the world to you.
Mhmm.
I don't know if the twin thing, like, really exists, but I know her and I definitely had a shared empathy where I could understand her and understand what she needed. We didn't always have to talk about it.
Yeah. I'm interested too in how you're able to accept the gifts that come from her passing without I don't know. I really don't know. Like, it's it's tough the gifts are coming from such a tragedy, but it would be easy to just, I don't know, not pick them up because it felt wrong to take them, but you're you're taking them, which to me says they're not being wasted because there are things you're getting out of of her not being here any longer. And instead of ignoring them because it's uncomfortable, you're you really are paying attention to them.
Therapy, Scott. Therapy? Gotcha.
Therapy helps a lot. But, yeah, it it does seem like a waste because it's, like, ignoring anything positive that could have come from that, I think, would be ignoring an entire part of her almost that was lost in all of this.
Cassie, you're you're in your thirties. You're in your thirties, Cassie. Let me put this into terms that people your age can understand. Black Widow gave her life so Hawkeye could go back to his family. He's got right?
Okay. He's gotta go do that now, or what she did is wasted.
Exactly.
Yeah. That's all. Everything see a Marvel movie. I fixed it for you with what was that? Endgame?
I don't remember exactly.
It was Endgame.
It wasn't? Oh my god. Apparently, I do remember, and I knew you would know because of your age, by the way. Those movies were so good. Not good like, you know, War and Peace good, but they were good.
They were good.
Yeah. Yeah. Yeah. Any and, anyway, how much therapy did it take for you to accept that?
Denial, Therapy, and Starting to Face It1:12:03
So I spent quite a few years kind of in denial a little bit. Mhmm. Kind of in this state of disassociating where I was rather manic. I was drinking a lot. I was partying a lot.
I was going out and just kinda being crazy. And I was completely disassociating from the experience, and I was kind of not even thinking about therapy. And then I had a moment in I wanna say it was 2022. It was the summer of twenty twenty two where I kind of looked back at this trail of destruction I was causing from dissociating from what was really going on. Just people around me that I was hurting with my actions or my words without even realizing it because I wasn't fully here.
And it scare being that way scared me so much that I immediately got a therapist. I immediately got a psychiatrist. And at first, they thought I might have been bipolar or and it was really just trauma. It was really just disassociating from this experience that I couldn't even imagine beginning to deal with. And I honestly haven't started to until until maybe six months ago is when I've really been able to start talking about it and focusing on it in in my therapy and really starting to kind of accept where I'm at and the fact that she's not necessarily here with me.
She is, but she, you know, she isn't. Yeah. And I couldn't face that. For a lot of years, I couldn't face it.
I can't imagine, honestly. It it's the that you're having an incredibly unique experience. You know? Well
It's unique, and there's not a lot of there's not a lot of resources for it, which is why I felt that it was kind of important for me to find a platform.
Yeah. I was gonna say that's what led you here to do this. Right?
Yeah. To not only talk about the the diabetes and the health issues, but to bring a little of awareness to twin loss because it is complicated.
Well, I mean, I looked into taps a little bit while you were talking, and it I mean, it's not a thing that affects a lot of people. You you know what I mean? Like, so when when you're having something that unique happening to you, the support system around it is gonna be, I mean, shaky, you would imagine, you know? And then moving forward, living as a twin is not a thing that, you know, a lot of people, you know, have experience with losing a twin is even less so. Having medical issues prior to that, sharing the medical issues, some of the medical issues, you are in an incredibly unique situation.
You did a really good job for yourself getting out of this.
I've done the best I could. There's been the TAP stuff has been rather rather recent that explained a lot of unanswered questions.
Mhmm. Is it important to get those explanations?
You know, I I do think I'm gonna have some closure with it because for the last five years, we're kinda like, why did this happen? Like, why did her kidneys fail? Because they biopsied the kidneys and said it was not diabetes related. And they diagnosed her with lupus along the way. They never really thought that was what was causing the vascular issues, and they just never really figured out what was going on.
Ultimately, she got an infection, got sepsis from that infection, which sepsis has a forty percent mortality rate. So that's kind of what what happened there. And it was during COVID, so they weren't letting anyone into the hospital. There was two weeks, which is the longest we've ever gone without talking or seeing each other, where they weren't letting me in to the hospital to be with her. And then by the time I did, she was in a coma, and I never got a chance to talk to her.
But they pretty much told us there's there's nothing we can do, and you guys need to decide if you're gonna take her off life support or keep her, you know, in the state where she'll probably die anyways because nobody's gonna operate on her in the state she's in.
Saying Goodbye1:16:14
Or a situation.
It was a very unanimous decision between her husband, myself, and my mother. And I laid with her, and I held her when they took her off. And it sorry. It's the first
Oh, you're gonna
make me time I'm about this.
Starting to cry. Just keep going. You're fine.
And I felt the I felt the energy leave, and I knew. Yeah. I knew when she wasn't there anymore. And then there was this sense of guilt that I had for not only still being the one here, but why this happened to her and not me, and then looking at the caps and being the receiver, being the one that, like, took all of the blood and took all of the there was a certain amount of guilt that has come with that that I haven't quite worked through yet.
I have to tell you. When I was reading about the Taps, I thought whoever named these arms of this really wasn't thinking about the human side of it. Like, why would you why would you couch that this way? Do you know what I mean? Like, the receiver is Yeah.
Yeah. Yeah. Yeah. No. I hear you.
I hate that word because multiple reasons. Growing up, my grandma was always like, you know, Cassie, since birth, you've always been the fatter twin. And things like that and it's true. All the way through our relationship, I've always, like, weighed more than her and whatnot, but it just stemmed from that. Like Yeah.
Stemmed from the difference in her size at birth and her health conditions along the way that there was nothing they could have done than any ways to have changed the outcome. What's also
even saying you. Like, right, like, you took, you were fatter, you were it's not like a conscience it's not like it's not like they came and found the zygote, and they're like, hey. Would one of you like to take and one of you, like, get taken from? And you were like, yeah. Me.
I'll do it. Like, you know what I mean? It's not really you. It's just the it it I don't know. It's got nothing to do with you.
It
it It doesn't. Yeah. Rationally and logically, I know that. I know I made no decisions in any of this and that none of it was my fault. Mhmm.
I think that one's just gonna take a little more a little more time, especially because I am just kind of recently starting to work through some of this. And it being just, you know, a couple days away, you kind of your body knows even if you don't.
Yeah. Like You're
kinda like, what's wrong with me right now? Why am I acting weird? Why am I so tired and depressed and whatnot? And then you're like, but it doesn't have anything to do with that. So it's like, there's still a part of me that can be in real denial about it all.
Yeah. You're not drinking anymore, are you?
No. Good for you. Occasionally, the weekends, but never more than one or two. And I'm looking into taking LDN, the low dose naltrexone for base level inflammation. So there's no drinking with that I mean is fine.
Like a perfect person to go to Hopkins and ask about that MDMA therapy.
I think I would be really about that.
Yeah. You would think that they'd be like, wait.
Let's just enjoy that.
What's that story? Yay. You're in. Let's go.
You have both. Make me feel happy? Okay.
I don't know. They say it just make makes your trauma melt away. I don't know. So I don't know if that's true or not, but it's what it's what everybody's saying. I can't thank you enough for sharing this with me.
I've I've struggled with what to call the episode. For a minute, I thought I wanted to call it tired of sick and tired, but I might call it trail of destruction. I don't know if I I'm not sure why.
It does feel that way.
Yeah. It's good. Well, you I that's a phrase you used, and and I thought, well, that might be right. But you're not on that trail anymore. Right?
You wouldn't think of yourself that way.
No. Not at all. I'm very hyper aware of myself and my actions and my words. It's just, you know, at some point, you do have to look back and realize the damage you caused and not run from it. But face it and face everything you're going through.
And, you know, your body does it to protect you, which it's like, thank you, but no thank you.
You know how I know But when the con you know how I know a conversation's going well? When you're speaking or the person I'm talking to is speaking, I have my thought. I'm like, oh, I wanna say this next, and then you say it instead. And that just happened. You I I thought, you gotta face your shit and I'll hold that thought.
Let her finish her thought and then I'll I'll chime in with that. And then you just said it instead. And so, yeah, maybe you just have to maybe that's the it. Maybe that's the title of this one. And I can't put shit in the title, though.
Face yourself? What do you think?
Well, you know, you did say that that's what you do best. So I'm gonna leave that to you.
See, why would that's horrible to do to me at the very I was giving you the chance to name this episode and just left me
I'll never come up with one better than behind the cheese.
I am a genius.
I hear genius title. I hear It pulled me right in.
I hear what you're saying. I am thrilled that you only found the podcast a year ago, and it feels so valuable and present to you that it doesn't feel like an old thing you found in a closet that still is fun but smells weird. And that that means a lot to me that the podcast is is is producing at a high level still this far into it. I'm gonna take that from this and a lot else, by the way. So thank you very much.
I guess we'll find out what it's called when it comes out. But if you'll hold on for just one second, I just need to tell you a couple things after we're done recording. But thank you.
Thank you for giving me this opportunity to bring awareness. And this was also pretty healing for me because I haven't talked about a lot of this, yet. So
I'm glad.
This was a very healing experience for me. So I appreciate you having me on and giving me the platform to do so.
Well, congratulations on facing your stuff. I think it is commendable and not a thing that everybody, can make happen all the time. So you you you took a huge step. Yeah. You're welcome.
You're you're saving your life, you know. Hold on one second.
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