#1696 Down On My Knees

Summary

Juicebox Podcast: Type 1 Diabetes

Episode #1696: "Down On My Knees"
Host: Scott Benner
Guest: Cecilia
Date: December 1, 2025

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Episode Overview

This episode centers on Cecilia’s experience as a parent navigating her daughter’s type 1 diabetes diagnosis—just a year prior—and the practical, emotional, and systemic challenges she faced. Host Scott Benner and Cecilia dissect the realities of diabetes management, advocating for your child, gaps in medical education, family dynamics, and the transformative impact of patient communities (notably, this podcast). The conversation candidly explores both the uncertainty and empowerment that comes with managing type 1 diabetes, especially as a parent and caregiver.

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Key Discussion Points and Insights

1. Diagnosis Story and Early Signs

• Cecilia details her daughter's behavioral and physical symptoms before diagnosis: sudden agitation, increased thirst, weight loss, increased appetite, and bathroom accidents.
• The signs were initially chalked up to stress, growth spurts, or anxiety, delaying the diabetes suspicion.

Memorable moment:

“Looking back now, I know what all of these things were...she started getting really agitated...turned into every night, oh, my stomach really hurts.” – Cecilia [05:32]

• Decision to consult Google, social media, and specifically TikTok and Facebook for information on excessive thirst.
• Family history played a role in her suspicion (husband’s side has type 1; Cecilia herself has Hashimoto's and celiac).

2. Diagnosis at the Doctor’s Office and Emergency Room

• Pediatrician seemed dismissive at first but ran a fingerstick test.
• Meter read “high,” prompting an immediate trip to the ER; daughter's blood sugar was 636 mg/dL, A1C over 10%.

Quote:

“She pokes her finger...and the meter just reads ‘high.’ And I look at my husband like, oh, shit.” – Cecilia [08:48]

• Hospitalization was brief; uncertainty over whether her daughter was officially in DKA; lack of immediate insulin administration.

3. Emotional Fallout & Family Response

• Cecilia’s anxiety and OCD added a layer of complexity; husband (active Army, often deployed) was initially in denial and preferred a “let her be normal” stance.
• Each parent’s coping strategies clashed initially; Cecilia wanted to control and overlearn, while her husband minimized the changes.

Dialogue:

“He thought I was doing too much and I thought he wasn’t doing enough.” – Cecilia [17:28]

4. Medical Education Gaps and Self-Advocacy

• The information received from endocrinology was limited, with a focus only on carb counting—no mention of protein, fat, or temporal basal variations.
• Most practical and nuanced knowledge came from online sources, particularly the Juicebox Podcast and supportive Facebook/TikTok communities.

Quote:

“Our education from the office...wasn’t enough...they just told us about carb counting. Nothing about proteins, nothing about fats...Nothing.” – Cecilia [18:08]

• Cecilia calls out the need for providers to at least try to deliver more robust information, even if families can’t process it all at diagnosis.
• Realization that sometimes the failure to educate stems not from strategic dumbing down, but from actual knowledge gaps among providers.

5. Advocating for Technology and Tools

• Faced resistance to early adoption of Dexcom; had to insist on getting a CGM (continuous glucose monitor) for her daughter, despite being told she’d need to wait a year.
• Leveraged research and assertiveness ("I wasn’t going to let them tell me no") to get needed supplies and technology.

Quote:

“I called them...can you give me a reason why you won’t give me a Dexcom...There’s no good reason. You can’t just give her a Dexcom. So can we come get one, please? We did.” – Cecilia [27:07]

6. Technology Feedback

• Loves current diabetes tech—Tandem pump, Dexcom G7—though acknowledges minor frustrations and learning curve.
• Finds the technology life-changing compared to managing via fingersticks alone.

7. School Life and Support

• Daughter returned to school five days after diagnosis. School nurse (“Emily”) was exceptional: added Dexcom Follow app, collaborated on management, and provided reliable, empathetic care.
• Encountered one problematic substitute nurse but handled the situation forcefully.

Quote:

“She added the [Dexcom] Follow app onto her personal phone, kept an eye on her...I didn’t have to fight her. We worked together on some things...and she was just great.” – Cecilia [33:54]

• Daughter educates peers—created a PowerPoint to help classmates understand diabetes, resulting in thoughtful inclusion by other students.

8. Navigating Medical Authority and Advocacy Challenges

• Cecilia describes friction with diabetes educators who were not up-to-date on pump features and acknowledges how isolating and frustrating it felt to continually challenge authority figures.
• Adjusts pump settings herself; recognizes that positive results (e.g., A1C 5.4, no excessive lows) speak for themselves.

9. Community, Knowledge, and Payitforward

• Attributes much of her daughter’s exceptional diabetes management to the podcast and online communities.
• Now takes an active role in connecting newly diagnosed parents to reliable sources (Juicebox Podcast, creators on TikTok).

Quote:

“Had I not listened to anything, there is not a doubt in my mind that [my daughter] would be doing as well as she is now.” – Cecilia [23:15]

10. Deeper Reflections: Advocacy, Chaos, and Personality

• Discussion turns introspective as Scott asks about Cecilia’s comfort with chaos and her background (“always waiting for the other shoe to drop”).
• Cecilia’s experience as a parent is informed by a mix of vigilance and humor, rooted in her high ACEs (Adverse Childhood Experiences) score, anxiety, and desire to compensate as a loving, “too-involved” parent.

11. Closing Reflections – The Systemic Issue

• Both agree it’s largely a “lottery” whether you get a thorough, empathetic provider after diagnosis.
• Many people, especially those less able to self-advocate, still receive second-rate guidance and are left struggling.

Quote:

“I sort of feel like with diabetes information...there’s a volcano in town and it’s about to erupt. And if I don’t tell you all, you’re definitely going to get hit by the lava.” – Scott Benner [51:40]

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Notable Quotes and Memorable Moments

• On realizing something was wrong:
  "All these things I wrote off to just being something else, not really thinking about diabetes. And then one day, it just hit me in my gut, and I was like, I think this is what this is." – Cecilia [07:40]

• On being forced to self-educate:
  "They deserve to know, whether they can do something with it or not, that’s another story altogether." – Scott Benner [19:05]

• On pushing against medical inertia:
  "It’s crazy that the people who you believe are there to help you are the ones you have to fight the hardest against." – Cecilia [31:33]

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Timestamps for Key Segments

• Diagnosis story & symptoms: [03:27–08:54]
• First hospital/endo experience: [12:33–14:15]
• Parent reactions & family dynamics: [14:19–17:47]
• Gaps in medical education: [18:05–20:39]
• Discovering and using the podcast: [21:41–23:15]
• Advocacy for CGM and tech: [26:22–28:04]
• School returns, ER nurse & support: [32:59–34:54]
• Peer education & inclusion: [36:18–36:56]
• Confronting professional ignorance: [43:28–45:19]
• The “volcano” metaphor for diabetes info: [51:16–51:51]

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Takeaways for Listeners

• The journey after a diabetes diagnosis often involves more advocacy and self-education than anticipated.
• Medical systems may lack depth in diabetes education—persistence is vital for getting tools and info.
• Online communities and podcasts like Juicebox can radically alter understanding and outcomes.
• School nurses can be either obstacles or invaluable allies; communicate, advocate, and educate as needed.
• Parenting and personality (especially around vigilance and anxiety) deeply affect how families respond to chronic illness.
• There remains a systemic randomness (“lottery”) in the quality and accessibility of care and education—one that communities and shared resources aim to address.

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Podcast Tone & Language

Authentic, conversational, at times irreverent; the episode mixes dark humor, intense honesty, and supportive advocacy. Both host and guest are frank about emotional struggles, family dynamics, and institutional shortcomings, but always with an undercurrent of hope, resourcefulness, and community.

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Further Resources

• Juicebox Podcast
• Facebook group/community as discussed in the episode
• TikTok creators mentioned: Addie Taylor, Marley
• “Bold Beginnings,” “Protein and Fats,” Jeremy/Control IQ Ninja episodes for further deep dives

Support and guides:
juicboxpodcast.com → Support Menu: A1C calculator, endocrinologist recommendations, pre-bolusing guide, ASL video guides, and more.

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For newly diagnosed families: You're not alone. Seek knowledge, ask questions, find your community, and don’t be afraid to push for what your child needs.

Transcript

[A]

As the holidays approach, I want to say welcome and thank all of my good friends for coming back to the Juice Box Podcast over and over again. This episode of the Juice Box Podcast is sponsored by Skingrip, durable skin safe adhesive that lasts your diabetes devices, they can fall off easily sometimes, especially when you're bathing or very active. When those devices fall off, your life is disrupted and it costs you money. But Skingrip patches, they keep your devices secure. Skingrip was founded by a family directly impacted by Type 1, and it's trusted by hundreds of thousands of individuals living with diabetes. Juicebox Podcast listeners are going to get 20% off of their first order by visiting skingrip.com or juicebox. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. The episode you're about to enjoy was brought to you by Dexcom, the Dexcom G7, the same CGM that my daughter wears. You can learn more and get started today at my link dexcom.com juicebox Today's episode is also sponsored by Omnipod5. Omnipod5 is a tube free automated insulin delivery system that's been shown to significantly improve A1C and time and range for people with type 1 diabetes when they've switched from daily injections. Learn more and get started today@ 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@ omnipod.com juicebox I am not going to stop you.

[B]

Okay? I'm not great at that kind of thing. Is there like a template for introductions?

[A]

Oh, that's so interesting. This is now your introduction.

[B]

Okay, great.

[A]

What's your name?

[B]

Cecilia.

[A]

Oh, yeah. You're the reason I've been singing that song all morning.

[B]

Yep, I get that all the time.

[A]

Sorry about that.

[B]

That's okay.

[A]

I know it probably happens to you all the time, but it 100% has happened to me today.

[B]

It's quite all right.

[A]

Maybe because oddly enough, when my son was a baby, it was one of the songs that made him comfortable when he couldn't sleep.

[B]

That's funny. You gotta do what you gotta do.

[A]

That one and the other one was a Beatles song. I'd let you guess, but that would be boring. It was Blackbird.

[B]

Oh, yeah. Well, that's a good one.

[A]

I used to sit with him when we first moved into our place. We didn't have a lot of stuff yet. And so I would take him to this quiet room. It was kind of like a loft, and that's being generous. There was a small loft in a condo that we got that we never used because it was so small it was unusable. And on the other side of it was a storage room. Like, literally a storage room that I made my office in. So I would basically go upstairs, go into a large closet where my computer was. I'd lay him across my lap, rub his back, and play blackbird until he fell asleep. Oh, and now it makes me cry every time I hear it.

[B]

Oh, I would be the same way.

[A]

Yeah. So I can't even listen to the song. It's ruined the song for me anyway. Cecilia. What are you doing here? You have a kid with type one. You have type one yourself. What are we finding out today?

[B]

My daughter has type one. She is nine and she was diagnosed almost a year ago. It was October 9th.

[A]

Oh, very recently. Oh, gosh, Just a year and a couple of weeks.

[B]

Yeah.

[A]

All right. Other kids?

[B]

I have a son. He is a couple years older than her.

[A]

Okay. You still married? No.

[B]

Yes, we've been married for a while. It's too early for math. Since 2012.

[A]

Oh, that's fun. At least you knew their year.

[B]

Yeah, yeah, yeah. He's deployed right now, so my brain's all over the place.

[A]

What does your husband do for us?

[B]

He's in the Army.

[A]

Yeah. How long has he been in?

[B]

15 years.

[A]

Oh, wow.

[B]

Yeah, we're at. We're getting to the end, I was going to say.

[A]

Is he looking for a job?

[B]

Not yet, no. He's got. He's got his last couple. I think we have one duty station after this and then retirement from the Army.

[A]

What's he going to retire as?

[B]

Right now he's a master sergeant, so he doesn't think he'll make sergeant Major, but we'll see. We'll see.

[A]

Sounds like you think he will.

[B]

I think he's pretty good at his job. I always think he's going to do better than he does, but he's pretty humble.

[A]

Oh, that's very nice. Okay, so how long has he been gone? Like, what kind of chunks does he leave for? I guess is my question.

[B]

It depends. This time is a longer time. About a year.

[A]

So he's been gone about a year. Wait, was he.

[B]

No, no, no. He's going to be gone about a year. We're not even halfway yet.

[A]

Ah, so he was around when your daughter was diagnosed?

[B]

Absolutely.

[A]

Okay, tell me about that a little bit.

[B]

Well, do you want me to talk about how we figured it out, or.

[A]

What do you want to talk about?

[B]

I mean, we can talk about how she got diagnosed, because I don't know. I didn't know a whole lot about it.

[A]

You're so amenable. I'm not accustomed to this. I say to my wife all the time, I should have married a more amenable person.

[B]

Well, it's. You know, I don't know what I'm doing.

[A]

No, but you're like, what would you like? And I was. And then that froze me because I was like, oh, gosh, no one ever asked me that.

[B]

I don't know what I'm doing. So you're the pro. But no, she was.

[A]

Yeah, tell me about it. Like that.

[B]

Looking back now, I know what all of these things were.

[A]

Okay.

[B]

But she started getting really agitated. Just randomly, or what I thought was randomly. And I'm talking like, I don't know. It was like she was suddenly uncontrollable, but it wasn't all day, every day. And I thought, well, maybe she's just hanging out with some kids at school that maybe she shouldn't be hanging out with. Or maybe she's just really frustrated. We couldn't figure it out. And then it turned into every night, oh, my stomach really hurts. My stomach really hurts. Well, she's always been my kid that's had a little bit of anxiety. And I thought she was just trying to get out of bedtime. And then it turned into one day she got home from school. We were picking her up in the car line, and she said, I really need you to start packing me some more water. I was like, you're not my water drinker. We had just moved to South Carolina. It's a lot hotter here than where we came from. And I thought, oh, well, you're finally listening to us. My kids don't want to drink water. So I thought, oh, maybe you're finally listening to us and you're just thirsty. Mind you, the water bottle that she brings to school is. I think it's 24 ounces. Traditionally, she'd maybe drink half of it all day. She started going through two, three, four of them a day. And I thought, that's kind of weird. My husband and I looked at each other like, huh. And now it should be noted that I have bad anxiety myself and I have ocd. And I'm always like, oh, my gosh, the sky is falling. This is the worst case possible. And so I thought, well, you're just being weird about It. Don't overthink it. And it just started tumbling into one thing to the next. And she would again, she was my kid that didn't eat much either, and started. You could not get enough chicken nuggets into this girl. You couldn't get enough cereal. Whatever it was, it wasn't enough. And I told my husband. I was like, do you think this is weird? He was like, yeah, a little bit, but maybe she's growing. And I started comparing pictures, and I was like, well, it looks like she's lost a little weight. But again, I just chalked it up to a growth spurt, didn't think anything of it. And then there was a couple of times that she had a couple of accidents. And I'm like. She goes, oh, I just laughed too hard. And again, she's my kid that has always waited to the last second to go to the bathroom. So all these things I wrote off to just being something else, not really thinking about diabetes. And then one day, it just hit me in my gut, and I was like, I think this is what this is. And so I went on TikTok, and I started looking, well, how much water is too much water? Trying to find anything I could to, like, I don't know, talk myself out of it being what it was. I have two autoimmune diseases myself, and my husband's side of the family does have type one.

[A]

Okay.

[B]

Should I have been surprised? No. And so I, you know, I remember calling my dad. He was a firefighter for years and years and years, and so he's been to people's houses who have low blood sugar or whatever. And I was like, hey, do you know anything about this? He said, no, but you should take her to get her checked. Okay, smart. We go to the primary care. I tell her what my concerns are, and she's kind of, like, waving me off a little bit, probably thinking that I'm just, you know, crazy mom. She was like, but it's no problem. We'll check her finger. No big deal. She leaves. The medical assistant comes in, and I'm standing next to my daughter. She pokes her finger. Who? My daughter, by the way, is like an anxious mess at this point, because I don't. We don't go to the doctor in this house. So we're going. Something is wrong. She checks her finger, and the meter just reads high. And I look at my husband like, oh, shit.

[A]

Yeah.

[B]

And we went to the emergency room.

[A]

I have a bunch of questions.

[B]

Sure.

[A]

How old are you?

[B]

How old? 37.

[A]

37. When you wanted information about drinking water, you went to TikTok.

[B]

Yeah. That weird? No.

[A]

I don't know that it is. I'm trying to, but it's not what would occur to me. So how do you search TikTok for that information?

[B]

You know, I don't remember exactly what I did, but I think I put in, like, signs of type 1 diabetes. And I tried to figure out. I was going through people's videos to try and see, you know, when they were saying, this is how I got diagnosed. I was hoping to find, like, a concrete amount of water that people were drinking to say, okay, that's an excessive amount. I didn't know what that was.

[A]

Okay.

[B]

And I thought, well, this is an excessive amount for her, but is it so excessive that I should be worried? I was just trying to find. And I went. I went to Facebook. I searched everything.

[A]

You were all over the place. Okay.

[B]

All over the place. And she had had a friend in her first grade class who was type one. And I messaged his mom and I said, hey, when he got diagnosed, how much water was he drinking? And she. I mean, she didn't remember anymore at that point. It had been a year or two for her, but I was everywhere and anywhere looking for something.

[A]

Okay, what made you think diabetes initially? Just because it was in the family? Or did something about the peeing bring it up for you?

[B]

The water and the hunger. And then I started putting all of the little signs together. You know, I tell people all the time I'm an anxious mess about everything, but this was different. Like, once I knew, I knew. And when they told me, I was not surprised.

[A]

You have other autoimmune issues. So what do you have hypothyroidism?

[B]

Yes. I have Hashimoto's and celiac.

[A]

Celiac. Those are gonna be my guesses. You ruined it. I was gonna look awesome. And you have anxiety?

[B]

Yes.

[A]

Like diagnosed?

[B]

Yes.

[A]

You do something about it?

[B]

I have Zoloft in therapy.

[A]

Okay. Is it helping?

[B]

100%.

[A]

When you said you have OCD, do you meant diagnosed or you just meant you're. You're. Oh, okay, you're. And how does it manifest?

[B]

Mostly a lot of rumination. And, like, worst case scenario, what if? And then in my head, I'm like, okay, well, you know that you're doing this kind of knock it off thing. It's not like an outward. I have to lock the car four times.

[A]

Or you're not counting or taking steps or retracing your steps or something. Like, okay, well, perfect for your husband. To be in a war zone, that's a great thing for you.

[B]

True. Well, luckily he's not in a dangerous spot right now, so. Thank God for that.

[A]

I mean, really.

[B]

I know. I know.

[A]

All your life?

[B]

Yeah.

[A]

Okay. Anybody else in your family have that going on? Your mom, your dad, sisters, brothers?

[B]

No.

[A]

No, just you. Do they have any autoimmune stuff? Your mom have Hashimoto's? No. No.

[B]

Okay, Well, I should say neither of them have anything that they ever knew about.

[A]

No. Fair enough. Anybody pooping a lot after Thanksgiving dinner?

[B]

You know, I don't know. I couldn't tell you that.

[A]

You don't see people running off to the bathroom after food?

[B]

No.

[A]

No. Okay, I'm gonna take a big swing here. Is there any bipolar in your extended family?

[B]

Yes.

[A]

Okay. And on your husband's side, there's type one. So you guys have like a perfect mix to make a baby with type 1 diabetes. Yeah.

[B]

And it's funny because as they were growing up when we went to the pediatrician and got their vaccines or whatever, and I would say, hey, is this something I need to worry about? No, don't worry about it.

[A]

Okay.

[B]

Okay.

[A]

Any PCOS in your family?

[B]

No, not that I know of.

[A]

Not that. You know, you don't have any trouble making those babies or anything like that?

[B]

No, we've all. I mean, I only have two kids, but the rest of them.

[A]

Gotcha.

[B]

They're doing fine.

[A]

All right. Okay, I got it. So I have all the information I was interested in from that part. So you're the meter high blood sugar. Sorry. I'm going to get you back on track.

[B]

That's okay.

[A]

And then you end up at the emergency room?

[B]

Yeah, we went to children's.

[A]

What was that blood sugar like? Were you there for days or was it a quick one?

[B]

We got there around 3 o' clock and we got. They got her upstairs by. Of course, we were coming in at shift change, so it took a little bit longer. She was admitted around 8:30 to the floor.

[A]

To keep her. For how long?

[B]

We were discharged the next morning. Straight to endocrinology, which was across the parking lot.

[A]

Okay, so not much in the way of like, her blood sugars weren't too high. She wasn't in decay, obviously, like that kind of stuff, you know, Gotten ahead of.

[B]

I couldn't tell you. I'm assuming. No. Her blood sugar was 636 and her A1C was 10 something, but she hadn't been throwing up, she wasn't breathing weird. The doctors didn't say a Whole lot. To me, that's a whole other thing.

[A]

Dig into that for a second. What do you mean the doctors didn't say a whole lot to you?

[B]

We had one resident come in and she talked to my daughter. She was a type one as well, and she was showing her pump and everything. But nobody said anything about dka. Nobody said anything about how long to expect to be there. None of that. And you know, my husband was kind of in denial. I was like, just a mess on another planet. I was keeping it together outwardly, but inwardly it was like, oh my God. And so we didn't really know what was going on or what to expect. They didn't give her insulin for quite some time, which was insane to me. But again, I didn't know how it worked. And so I went back and read through the notes and one of the doctors said she was in DKA and one of the other ones didn't.

[A]

So I guess the one that said that she wasn't one, because I don't think they would have let her out of there that quickly.

[B]

I don't either, which is fine. I don't want her to have been that sick, obviously.

[A]

No, of course. It's just interesting to not get right. Yeah. Agreement on it. What do you mean about your husband being in denial? Was he like, just talking about the football game? Be like, we're almost out of here. Or was like, what do you mean by that?

[B]

No, he's very protective over her and rightfully so. And those were his words, that he was in denial for quite some time. Like we were not the best team together for a few months there after it.

[A]

How did it shake out? One of you was in a panic and one of you pretended it was all cool. Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your A1C on this podcast. Did you know that the Omnipod 5 was shown to lower A1C? That's right. Omnipod 5 is a tube free automated insulin delivery system and it was shown to significantly improve A1C and time and range for people with type 1 diabetes when they switched from daily injections. My daughter is about to turn 21 years old and she has been wearing an Omnipod every day since she was four. It has been a friend to our family and I think it could be a friend to yours. If you're ready to try Omnipod 5 for yourself or your family, use my link now to get started. Omnipod.com juicebox get that free Omnipod 5 starter kit today. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox the Dexcom G7 is sponsoring this episode of the Juicebox podcast and it features a lightning fast 30 minute warmup time. That's right from the time you put on the Dexcom G7 till the time you're getting readings. 30 minutes. That's pretty great. It also has a 12 hour grace period so you can swap your sensor when it's convenient for you. All that, on top of it being small, accurate, incredibly wearable and light. These things, in my opinion, make the Dexcom G7 a no brainer. The Dexcom G7 comes with way more than just this. Up to 10 people can follow you. You can use it with type 1, type 2, or gestational diabetes. It's covered by all sorts of insurances. And this might be the best part. It might be the best part. Alerts and alarms that are customizable so that you can be alerted at the levels that make sense to you. Dexcom.com juicebox links in the show notes [e-mail] to Dexcom and all the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful.

[B]

I wouldn't say in a panic so much. I was just like. And with everything I want to know as much as I can know about this, figure out how to start to live normally with it, move on to the next thing. And he was kind of like, I mean, not to speak for him, but from my perspective, I wish that this didn't happen. She's still a normal kid, which of course she was, but I don't know how to explain what. I mean.

[A]

No, you are explaining it. Keep going.

[B]

He was just like, well, we don't need to. I was big on, okay, we need to check her finger, see what she is before she eats. Because they wouldn't give us a Dexcom.

[A]

His take on that was what, what was that? When you said you wanted to be checking your finger a lot, but he.

[B]

He thought I was doing too much and I thought he wasn't doing enough. I guess that's a good way to explain it.

[A]

Okay, a year later, what was the truth?

[B]

Uh, somewhere in the middle.

[A]

Did he come around? I mean, by that, I mean, did you yell at him and then make him do what you wanted? How did that work? You know?

[B]

Yeah, I'm not even gonna lie. I, you know, I'm working on it. I have a really big control problem, which kind of works out for this with managing this, but, you know, in other areas of my life, it's not always served me well. But we're, We've. We're so much better at it now, a year later.

[A]

Why do you think, what do you think happened that made you better at it?

[B]

This podcast, and that's part of why I had emailed you a few months ago, is because our education from the office. I'm so torn on this because I feel like it wasn't enough. And I had posted about this in the Facebook group and somebody pointed out, you know, they don't have the time and people don't all have the want to know. They don't want to necessarily understand all this. And so they just kind of, for lack of better words, dumb it down and simplify it just to get people out the door and started. Like, they just told us about carb counting. We didn't get anything about proteins. We didn't get anything about fats. We didn't get anything about how Basil could be different at different times of the day. None of it just straight carb counting.

[A]

I have to say that after a fair amount of time being involved in this, I agree with that sentiment that it's possible there's no good way to attack it. Yeah, right. And. But still, I don't think that's an excuse for not doing it.

[B]

Right.

[A]

You know what I mean? Like, I think you have to lay it out in a way that is, you know, something that people can absorb in those first couple days, which is obviously already, like, a crazy time to begin with. They still deserve to hear. They. They deserve to know whether they can do something with it or not. That's another story altogether.

[B]

Right?

[A]

If I was on a cliff and there were a thousand lemmings walking off the cliff, I think it'd still be incumbent upon me to go, hey, guys, you are about to fall to your death. Even though that's what they're there to do, and that's probably what they're going to do. And this might be a weird, like. Like maybe I'm not doing a good job here, but you know what I mean? Like, there's a way this is going to be handled by a certain number of people, a different way, by another number. I still think you should explain to them what's ahead of them, and then, you know what I mean, to their.

[B]

Defense, they could have told me all of this information that I learned on the podcast in that day. I mean, we were there two hours and then we were sent home. I wouldn't have processed any of it.

[A]

So I believe that too. I completely understand what you're saying. And so that's a weird thing to me. Like if they would have done it, I don't know if it would have helped.

[B]

No, it probably wouldn't have. And since then, you know, we're a year into it now. We still. I've made adjustments myself and it's worked out great. It's been fine. They would still have us at a 70 to 250 range. We don't, we don't do that. There's been no other education given besides we went to one pump class, which was just different reps there saying, hey, this is what we have. Pick one kind of thing.

[A]

Then this is the extension of that conversation. Then like I'll give them the benefit of the doubt that telling you if they knew wouldn't be that valuable. Maybe.

[B]

Yes.

[A]

But now it's starting to sound like they didn't tell you because they didn't know.

[B]

And they might. Yeah, I don't know.

[A]

This is very interesting. How are you supposed to know that? Coming in cold, right?

[B]

That was my biggest thing. And that's how I ended up. I was in a different Facebook group, It's like the mom T1D group or whatever. And a bunch of people said, oh, you gotta listen to the podcast. And I already listened to podcasts, so that was fine with me. And I drank it all up and I was like, oh, okay, this is why this is happening. After she's having, say, pizza.

[A]

Okay.

[B]

If I can understand why. And there's not always an understanding of why something is happening. But I learned so much more that I wasn't getting otherwise. And things started making sense and it made it. I don't want to say easier because it's not easy when you understand it. It's a. It's for lack of a better word, a little easier to understand what to do and where to go.

[A]

Yeah. I have to tell you, quite honestly, I didn't think you were going to say the podcast when I asked you what changed things for you. I thought maybe you and your husband just came to an agreement or he started seeing something differently or you backed off a little. I thought there was a story in there like that.

[B]

Oh, no, I'm dead serious. I listened to all of it. The bold beginnings, the math behind. I've listened to. I couldn't tell you how many times the protein and fats, the One specific episode with Jeremy, the control IQ ninja. I've listened to that probably 10 times, and I've taken notes each time to try and get her settings just right. And we're a year in and she's got 5.4 a 1c. So.

[A]

Wow, that was. That's great. Good for you. That's awesome. Yeah. Jeremy's episode is. He's a great example of, like, right place, right time. Found the podcast and I got to, like, like, get his. His story out of him because you come to realize, like, I haven't talked to Jeremy in a while. Right. Like. But I don't imagine that his level of involvement with diabetes is the same as it was back then. But in that moment, he found himself digging in. He came to some great understanding. He knew how to explain it. It was really accessible as far as his style of communication, you know, and there was like, we were able to record it and put it down for somebody and. Awesome. I can't tell you how many people have been helped by that one. I actually want to tell you that I am currently working with Tandem to build out a Pro tip series for their pump.

[B]

Even better.

[A]

Hopefully that'll help.

[B]

Absolutely. I've learned between the podcasts and a few different creators on TikTok, I have learned so much. And there is no way, based off of the information we are getting from our endocrinologist and what I had known, had I not listened to anything, there is not a doubt in my mind that she would be doing as well as she is now.

[A]

Yeah, no, it's awesome. And it's awesome that you went and looked for it as well, because you could have just said, Hey, 70 to 250. Right on. I got it. And no shade on him. But if you and your husband were thinking the same way, this sounds like what you'd be doing right now, you know, because he was. Some people are just more ready to. It's funny, I called you amenable earlier, but you weren't amenable to any of that. You were like, no, no, that's bullshit. We're fixing this.

[B]

I don't want it to sound like I'm saying he didn't care about her and he was making dangerous decisions. He absolutely was not. He was more focused on, she's still an 8 year old. Let her be an 8 year old.

[A]

Oh, yeah.

[B]

And I was more like, she is an eight year old. We need to figure out how to make this adapt to her and try and keep her a little steady instead of up, down, up, down, up, down.

[A]

Right. I didn't take you that way. I don't think anybody else did either.

[B]

Okay, good.

[A]

I'm just trying to say that, like, for somebody who's more floating in that direction, if someone tells you 70 to 250 is good, you're going to. Why would you question it? You're like, oh, yeah.

[B]

I mean, and I didn't for about a month.

[A]

I didn't question it for, like, a year. And then I started thinking, like, I actually found myself telling this story the other day. You know, I finally started worrying about the higher blood sugars and the bouncing and everything. And I said to the nurse practitioner, like, you know, like, I don't know. I feel like this is bad. Her blood sugars are high a lot. And she said, oh, high blood sugars aren't a problem for young kids.

[B]

Oh.

[A]

And I was like, in the beginning, I went, oh, okay, that's good news. Like, there must be a physiological reason why high blood sugars aren't bad for kids. And then it finally, like, it just stuck with me, and I pushed, and then I back to them again. I was like, what do you mean by that exactly? You know, she said, well, you know, like, dire circumstances from type 1 diabetes don't come for, like, 30 years. And I was like, oh, she just means she's young. I said, you know, 30 years now should be 32. Right?

[B]

Right.

[A]

Not really even, like, your life going yet. Like, you're telling me my daughter's gonna have, like, dire circumstances from her diabetes when she's 32.

[B]

Right.

[A]

And you feel like that's comforting. You might completely misunderstand this whole thing. And I don't know where you're at in the country. I'm not even asking you. But we were going to a pretty popular mainstream, you know, children's hospital, so.

[B]

We'Re in South Carolina. I had to learn really quick to advocate for her, and. Which is not a problem for me. I don't have a problem doing that. You know, like I said earlier, they didn't even want to give us a Dexcom. I'm sure they have some sort of equation where they figure out, you know, basal rates and all that. And, you know, they said, okay, well, let's see. She was discharged. We went in on a Wednesday night. She was discharged Thursday morning, Friday night.

[A]

She.

[B]

They said, okay, well, you don't need to check her. Her finger overnight after this weekend or after Friday.

[A]

Okay.

[B]

I was like, okay, that's weird. I'm not doing that, but okay. And so I Set an alarm for. I don't know, I think it was, like, every three hours or something overnight. And, you know, I'm reading in these groups. Get a Dexcom. Get a Dexcom. Get a Dexcom. Because she was also nervous, and she was wanting to poke her finger way more than she probably needed to. But I was like, you know what? This is for you. If this is going to make you feel better, go right on ahead. And so it was like 2 in the morning, and her blood sugar was 31. And I was like, oh, you know, I feel like that's not great. So. And she was a little combative. It was hard to get her to get some juice in. We got it. We got it handled. And I called them the next day, and I said, can you give me a reason why you won't give me a Dexcom other than you wanting us to learn the traditional way in case the Dexcom were to fail?

[A]

Yeah.

[B]

And which. Whatever. I kind of understand. But I said, there's no good reason. You can't just give her a Dexcom. So can we come get one, please? We did.

[A]

And they said yes.

[B]

Yeah. And to be fair, though, I wasn't really gonna let them tell me no. So.

[A]

Yeah, okay. So you. They pushed back. You pushed harder. Mm, I see. Interesting. Because the guy I interviewed yesterday said that they told him, a year. Yeah, you can't have a CGM for a year.

[B]

Yeah, they tried that. And I said, no.

[A]

A year, don't you think? Wait, I'll tell you. Anybody who has diabetes could tell you that in about three days. You figured out all the stuff that can go wrong.

[B]

Right then. That was my thing. I'm like, okay, well, we understand how to do this. This part isn't rocket science. I said, it's going to improve her quality of life. Can't you just give it to me? I said. Because they said, oh, well, insurance this and that. I had already looked up my insurance. There wasn't that. So we got one, and it's been fine.

[A]

Boy, I'll tell you, a lot of overlap this week with the episodes and the stuff that I said when I was away, given my talk, because, I mean, 2006, Arden's diagnosed. We started looking for a pump for her before kindergarten. So she was around 4. So this is 2009, 2010. Ish. Right. And, you know, we decided we wanted to have her pump before she went to school. We went to the, you know, the pump fair at the hospital.

[B]

Yeah.

[A]

This is very early on. Like, I believe that Omnipod was just getting going or had only been going for, you know, a short amount of time. And they had all these pumps laid out on tables, right? Just beautiful everywhere. I should point out that I think that every one of those pumps that was there probably doesn't exist anymore. Except for.

[B]

I was gonna say probably not.

[A]

Yeah, except for the Omnipod, right? It was kind of a conference room, but it was pretty big. There were a lot of tables in the middle, a lot of people milling around. Probably 50, 70 people in there looking at pumps. The back of the room had this kind of weird cutout. It was sort of triangular in the corner for some reason. There was a table in it. And as I was looking around, my wife was looking around. I looked up, and I saw this table on the other side of the room. There was something on it. I started walking towards it, but as I got closer and closer to it, I realized this is not part of the display. This is, like the crap table at the event where they threw all the stuff. But I kept walking to it for some reason. And as I got closer, I saw. Honestly, I saw an Omnipod that it looked like somebody threw on the table. It was the Omnipod box and a dummy controller, and you see there for demo reasons, and. And a pod. The best I can explain is it looked like somebody was tasked to put it on the table, got about five or six feet from the corner and was like, screw it, and just pitched it into the corner. You know what I mean? And I walked over and I picked through it, and I looked at it, and I took it back to my wife, and I was like, hey, yo, check this out. You know, this is not tubed, first of all. I think that's a big deal. And I was like, and it's disposable. I kind of stood there and, you know, philosophized with my wife for a second. I was like, well, they'll update this one day, and we'll just get the updates. Like, there won't be any. Like, oh, no, that's the one you bought. You're stuck with it for a while. And then we took it to the practitioner, and we're like, this is. We found ours. We're getting this one. Oh, Arden can't use that. She's too lean. She's too young. She doesn't use enough insulin. And we push back and said, like, no, you know what? Like, we're gonna do this. You know, like, this is the one we're gonna. We're gonna try. And she Pushed harder. Then she went and got like, you know, somebody above her to push on us. That person looked us in the face and gave us, like, just looked at us and was like, four years. And I was like, what? She goes, you're stuck with this for four years. If you pick it, your insurance won't let you switch. You're stuck now. I realize everything's different now, but like, this, this is the level that they were, like, leaning into it with. You know, it comes out later. They just didn't. They didn't know anything about it. They didn't want to look like they didn't know what they were doing.

[B]

Yep. I figured that out real fast myself.

[A]

I was like, you are kidding me? And then meanwhile, you're at home with a 31 blood sugar and your 9 year old like, being like, is this gonna be every day of my life?

[B]

Yeah, that was my thought. I'm like, I'm never gonna sleep again.

[A]

Yeah. Oh, yeah. Oh, no. Plus, you got other impediments on top of you, the OCD stuff. And like, that must have hit you really hard.

[B]

Yeah, yeah. I mean, we got it figured out, though. And then we got her on the Moby mid December, so she was chugging along less than two months after diagnosis.

[A]

So it's crazy that the people who you believe are there to help you.

[B]

Are the ones you have to fight the hardest against.

[A]

Truly, they're blocking you from getting to the help.

[B]

Yeah.

[A]

And then for some reason that if you ask them to contextualize that they have none. Like, why do I have to wait a year? You know, that's.

[B]

Yeah. And I. Yeah, that was my strategy, honestly, because I knew. What were they going to say?

[A]

All right, how's your daughter doing with all this?

[B]

Really good. I mean, she has her days, obviously. We just had. She changed her pump site the other day, and it, I don't know, ended up being a really sore spot. She had. She wanted to change it, but she didn't want to change it because it hurts. And we have moments like that, but for the most part, she does really, really well. When she got diagnosed, it was actually during fall break, so we weren't even in school. And that Monday, so what, Thursday, Friday, Saturday, five days after diagnosis, she was back to school. And I had never met the school nurse before, and I just. I walked into her office with a bag of supplies and was like, I don't know what I'm doing. Please help me. And what she said, she just kind of looked at me because then of course, I Had started crying. My husband was going into what he thought he should say, and I was. We were still not on the same page. It had been five days. And this poor nurse. I love her to death. She's amazing. Was just kind of looking at us like, what the hell? It's 7am on a Monday morning. Can we take a minute? But, you know, she did. She's been great.

[A]

You were like, no, I don't have a minute. I'm in a panic. Thank you. Correct. What did it feel like? Because when I dropped Arden off, I felt like for sure she was going to die there.

[B]

Yeah. I was sobbing, walking out, and I said, I don't even know how to take care of her. How am I supposed to trust this stranger to take care of her?

[A]

Oh, I had that same exact. I can't do this. Right.

[B]

Yeah.

[A]

I've been at it for four years, and I'm still like. Or I don't know how long it had been then. Maybe three. Three years. And I was like, I still don't really know what I'm doing. You're gonna do it. You know that's right.

[B]

Yeah.

[A]

You're not gonna care, like, the way I do.

[B]

Right. And. And not that I knew what I was doing either, especially five days later, but she has turned out to be. I could cry talking about her. She's also an ER nurse. She was just. I don't know. She's the best.

[A]

That's awesome. What do you think about her? Made her great. Is it empathy? Is it her understanding, her willingness to communicate?

[B]

All of it.

[A]

Really?

[B]

All of it. She has the same sense of dark humor that I have. She added the Follow app onto her personal phone, kept an eye on her, and she was like, you know, I want to learn what she looks like when she's low. Because this school, I think, has seven, 800 kids. And my daughter is. I think she was the third. The second diabetic at this point. And then two weeks later, they got another one, which is strange. But she just. She was. She did whatever I asked. I didn't have to fight her. We worked together on some things, especially for gym class. We were like, oh, well, this didn't work last week. What if we tried this this week? And she was just great.

[A]

She's One nurse for 700 kids.

[B]

Yeah.

[A]

And. And she still put this kind of effort into it.

[B]

Yeah.

[A]

And yet I hear stories from other people. They can't get their nurses to do anything.

[B]

Yeah, she. I mean, there is a health room assistant, too, but she's Not. She's not a nurse. She's great too. I love her to pieces. Yeah. Emily is just. She's something else that's extra special.

[A]

That's awesome.

[B]

Mm.

[A]

Would you say that there's gonna be some education when your husband comes back for him? Because he left six months after her diagnosis. Right. Ish. Am I about. Right on that?

[B]

About 10ish months. No, he's. He's good now.

[A]

He's good. He knows what to do now.

[B]

Oh, yeah, yeah.

[A]

He'll be fine when he gets back. What about her? Like, what level of. I guess, what percentage do you think she's taking care of things? And what percentage are you helping?

[B]

That's a good question, and maybe you'll be able to help answer it. So we had a little incident with a sub nurse at school, so we had her paperwork actually changed to self management. That being said, she's not out there winging it on her own. I text her at snack time. I text her at lunchtime. We text all the time. For a while, she was not feeling her lows, and she's starting to really get pretty good at that. So she carries, like, her stuff with her. And usually after recess, she knows to have a little. A little treat. She knows how to carb count. If I forget to text, you know, 15 minutes before lunch, she's texting me, hey, we forgot to do pre bolus, so she's doing great. She does all her own site changes. She was doing all of that even with the injections the day we got home.

[A]

Well, she sounds like she's doing well for a year and.

[B]

Yeah.

[A]

Yeah. Honestly, how are her friends handling it? Is she having any trouble with, you know, classmates, people being crappy to her, or.

[B]

No, luckily she actually made a little PowerPoint presentation last year and, you know, told her, taught her class about it because, you know, her stuff was beeping occasionally. And they've all been really receptive. There was one little boy this year who brought in brownies, and his mom stopped me in the car line, and she was like, you know, he wanted me to tell. Tell you that, you know, we need to make sure that we have the carb count because Adeline has to have insulin and she can still have it. We just have to know, you know, the carb count and give her some insulin ahead of time. And I'm like, that's so sweet.

[A]

Yeah. And he knew he had it right, too.

[B]

He did.

[A]

Yeah. I saw he was paying attention. It must have been a hell of a PowerPoint.

[B]

I guess so. I don't know how to make those. So she was on her own.

[A]

I don't know how to make. What do you do? Are you stay home or you have a job, what do you do during the day?

[B]

I stay while I work from home.

[A]

Okay. And so it's not trouble for you to kind of keep abreast of what's happening with her blood sugar?

[B]

Not at all.

[A]

Do you find yourself communicating with her while she's at school?

[B]

Yeah.

[A]

Texting?

[B]

Well, yes. Only, I mean, I'm not texting her to say, hey, how's science class going? But, you know, I have my alerts set. I know what time she goes to lunch or recess or gym class, and I just. I glance at it before she has one of those things, see if we need to be doing any. Anything, and we kind of handle it through there.

[A]

What's your backup like? Is there if something goes wrong, how do you have it set up? Do you call directly to the nurse? The nurse is obviously following as well, but doesn't mean they see it right away. How do you do all that? Have you not needed it yet?

[B]

No, we haven't really needed it yet. Luckily, Emily's really good. Like, she's. I have her personal phone number, and I've kind of made her my best friend now, so she's always really responsive. I've never had. The only issue we had was that one day when she was out sick and there was a sub that didn't want to give her insulin for her lunch because she had already had insulin that morning.

[A]

Oh, one time. Good enough.

[B]

Yeah. I said, that's not how it works.

[A]

Was she older?

[B]

No.

[A]

No. Okay. It's misinformed a bit.

[B]

Yeah.

[A]

Did she work in a hospital previously?

[B]

I have no idea.

[A]

You know what I mean?

[B]

I would. I don't think so.

[A]

Trying to think where that.

[B]

That idea came from, I don't know, but I was. We fixed that real quick. We fixed that real quick because we kind of got into it a little bit, and I was like, no, we're not playing this game.

[A]

I don't know if I'm proud of this or not or if I'm ashamed, but in high school, I mean, Arden used the nurse's office as a place to go swap a pod if she needed to. You know what I mean? Like, she was not involved with these people at all. One day, I realized that one of the nurses called Arden's endocrinologist for something.

[B]

Oh, I feel like. Did you do an episode about this? Because I feel like I Listened to it and was yelling along.

[A]

I don't know. But that lady might still be afraid of the telephone because I lost my head, you know?

[B]

Yep. I did, too. To. We had an emergency 504 meeting with the nursing director for the district, everybody. And I was like, you guys aren't touching her anymore. It's Emily or it's nobody.

[A]

I was like, you gotta mind your own business. You know what I mean?

[B]

Like, yes, a hundred percent.

[A]

I was like, I don't care. I really don't. I have absolutely no care at all in the world why you thought it was okay to contact her doctor without telling. Talking to me first.

[B]

And no, absolutely not.

[A]

That's crazy. And then, by the way, I've heard other people, like, oh, it was nice. They got a hold of the doctor, and then I'm like, I. Maybe it's just the way I think of it, but, like, that seemed like a line to me, you know?

[B]

You know, I don't even really trust the doctor at this point, so that would be a hard no for me.

[A]

Well, yeah, I mean, that's. It's a good point. The doctor, if I line all the years up and really look through it, didn't want to increase Arden's thyroid medication when she needed it. Misdiagnosed her thyroid thing as a heart problem. Told us her 8A 1C was okay when she was younger. You know, on and on and on and on. And by the way, lovely people. If I met him right now, I'd sit down, have dinner with them. Awesome.

[B]

Oh, 100%.

[A]

Yeah, yeah, yeah. But so now I got those people and the school nurse, and they're going to autonomously make decisions about Arden without talking to me, even, like, out of your mind. Yeah, Yeah. I wouldn't, buddy. What?

[B]

No.

[A]

And you know what? I think I started out okay on the call. I want to be clear. I don't think I jumped on the call. I don't think I was yelling while the phone was being.

[B]

I started out that way, too. I did not finish that way.

[A]

Well, I thought. And then I was just like, oh, good, you thought. It's great. Go make your own goddamn baby.

[B]

Yeah, yeah, yeah. Huh?

[A]

You want something to take care of? Get a puppy. Leave my kid alone.

[B]

Yeah.

[A]

Here's what I need you to do. It's all written down right here. It's very simple. Just.

[B]

And that was my thing. I said you. It was made clear to me that you did not even read the orders that are there. And it just snowballed from there.

[A]

I Have to tell you, not only that, at this point, in Arden's care at school, these people were not involved with her at all.

[B]

Yeah, that's even weirder.

[A]

Like, how did I get in your crosshairs today?

[B]

Right.

[A]

You know what I mean? Like, were you bored? Like, was this before they put games on your phone? Like, what's happening? Exactly. Oh, my gosh. Anyway, all right. She has. I'm sorry, she has tandem Obi. I want to just say tandem diabetes.com juicebox. If you'd like to learn more about that. We use Dexcom with that, right?

[B]

Yeah, the G7.

[A]

Dexcom.com juicebox and where are you at with the technology? You love it. You hate it.

[B]

Oh, I love it.

[A]

You see room for improvement. Like, what. What's your feedback on all of it?

[B]

You know, the decks come, we've had some fights, but overall, it's great. I can't complain. It's better than not having it.

[A]

Well, yeah, that's for sure. You know, it feels like you're only in it for a year, so it'd be really. It's interesting to hear from you on that because you had enough of an experience in the beginning to know that not having a CGM is tough. Right. And then. And you've only been using it for, you know, I would imagine, like, 11 months now. Yeah, right. And not. I mean, technology. Nothing's perfect. It's got its limitations. It, you know, probably fails sometimes or whatnot. But it's interesting to hear your feedback on it because you're so new. You're not, like, entrenched. You don't have a ton of, you know.

[B]

Yeah, I mean, I really don't know what I'm doing.

[A]

I don't know what I'm doing.

[B]

We're doing the best we can every day.

[A]

That sounds like you're doing pretty well, you know, don't you. Do you not feel that way?

[B]

I'm hearing it out.

[A]

Do you feel accomplished at this point with it?

[B]

Yeah, I don't feel panicked about it anymore. Even, you know, this summer we have a trampoline in our backyard. And that proved to be quite challenging over the summer. And I got to a point where I'm like, I've tried this. I've tried that. I'm not getting it right, but there's gotta be a way we can make this work. And we had an appointment over the summer because they still have a school every three months. And I, you know, I was talking to the endocrinologist. I'm like, do you have any suggestions? She was like, oh, well, have you tried doing this with Basil? Doing that with Basil? And, yes, I've tried all of that. And she kind of just stared at me, and I'm like, oh, okay, that was the end. I'm on my own with this again.

[A]

And so I'm not lit. I'm just imagining.

[B]

I was just like, are you for real?

[A]

Have you tried to tempt Basil? I have. Okay, well, we're done.

[B]

I guess we kind of got into, like. I don't want to call it an argument, but she was trying to tell me the pump couldn't do something that I knew that it could. And it got to the point where she took my daughter's phone, left the room with the diabetes educator. They had a little powwow somewhere and came back and basically had to be like, oh, yeah, you're right. I know. We left the appointment, and my husband goes, ooh, you do not like her, do you? I said, oh, was it that obvious?

[A]

We Googled it and figured out you were right. Thank you.

[B]

Right.

[A]

Like, sorry, what were you trying to tell them? The phone did you remember or the app did?

[B]

Do you remember that you could set a temp Basil for however long? Or.

[A]

Wait, your diabetes educator didn't think you could set a temp Basil for a certain amount of time?

[B]

Yeah, they thought you could only do it. I don't know. It was right after Tandem came out with a mobi that you could. Oh, they did the Control IQ plus update or something. I don't remember exactly what it was called.

[A]

In fairness to her, they had just updated the software to do that. It didn't do it before?

[B]

No, it did. It just did it for longer now, and she thought it didn't do it at all. And so I was just. I said, okay, well, again, like, doesn't.

[A]

Fill you with confidence. Forget the temp Basil thing and the. And the bouncing and the trampoline. Put all that aside. It makes you feel like, oh, my God, I'm alone in this.

[B]

Yeah, yeah, that's the bad one. I mean, they couldn't even print out the right. They can look up the pump settings on however they do it. They couldn't even print out the right ones to give to school. And so I was having to call back and get the new ones mailed, and it was just. I don't know. I mean, I guess it's kind of fine that I've figured it out on my own, and I make the settings, you know, I adjust them myself. She doesn't Seem to care. I mean, what is she going to argue with me? She has a 5.4 a 1c. What is there to argue? She doesn't have a bunch of lows.

[A]

So yeah, you're not getting to that. A1C dishonestly with and I know, and.

[B]

I just, I feel bad for the new families that go in there who don't know what they're doing, who don't know to look for the podcast. They're out there drowning, I feel.

[A]

Yeah, well, I'm pretty sure they are. There's a lot of people, and I don't mean just because they haven't found me, but like there are a lot of people struggling with this.

[B]

Yeah, yeah.

[A]

Much more than you think. And it all you can really do is like tell people and, and hope they are able to put it, put it together, you know? Yeah. Geez. It's important to remember, I think the limitations of most things in life come down to humans. At some point, like at some point or another, you're going to bump into the chain where you're counting on a person to know a thing, to care, to have the communication skills to, you know, get it out to you if they do know and care. But you're also going to bump into people who are just at work, couldn't possibly care less, don't have the knowledge at all, or misguided somehow, are just poor communicators and don't know what they're talking about. And then they kind of turn that on you and they're like, oh, it's your fault. You know, like imagine, imagine this has only been 11, 10, you know, 10, excuse me, 11, 12 months for you. But imagine if you never found any of this information out and a decade from now your daughter's struggling and someone turns to you and says, well, you guys are non compliant. You're not doing what we're telling you to do.

[B]

Oh, I'd be so pissed off.

[A]

Right. But you might also believe it, right? Yep. So I don't know, there's part of me that thinks the machines are going to save us sometimes. If it hasn't become obvious already, listening to the podcast for a year, it's become obvious to me after making it for 11 years that it's completely random. Who's going to be good at this and who's not going to be? And I mean, on a professional side of it. And you can't imagine you're diagnosed. For everybody listening, you or your kid are diagnosed, right? And the hospital you go to, what they tell you where they send you, what the people at that place understand. Are they going to tell you, here's a cgm, go home. Are they going to tell you, you can't have a CGM for a year? Anywhere in between on their understanding and their compassion and their capacity to educate. There's a spectrum of that. And you are not in charge of which person you land on that gives you that information. And so it is literally like a lottery whether you end up with a good endo or not.

[B]

Yeah. And I wish people, and I say this outside of diabetes too, weren't afraid to question things.

[A]

Yeah, well, that's another human limitation. Some people can't speak up. I'm not saying like they're, you know, they don't have the juice or whatever. Like, it's just some people are not wired for that. No, like, like I said, like, there are just some people who are told what to do and they're rule followers. I think it's a pretty simple way to say it.

[B]

I. Outside of my kids, you are. I'm kind of one of those people. But when it comes to my kids. No.

[A]

Yeah. It just, it doesn't happen for everybody.

[B]

No.

[A]

And by the way, if they're listening, this is not a judgment on you either. I just think this is how it goes. It's like, you know, it's like that thing where they hold up the picture of the dress and it's purple or it's yellow or something. Like sometimes you see one and sometimes you see the other. Sometimes you react a certain way and sometimes you don't. I don't think it's because you're not paying attention or you don't care. I don't think it's any of that. I think it's just, you know, people's personalities. So imagine what happens when a very get along to get along person bumps into an endocrinologist that doesn't know what they're doing, that ends up with 10 years from now, your A1C is like eight and you're like, I'm doing good. They told me I was doing good. Yeah, you don't know any better and they don't know any better. And then your 2 year old is 32 one day and says, hey, why are there clouds floating in front of my eyes?

[B]

Right. Well. And that's why I was getting so frustrated once I started listening to more episodes. I'm like, why are we not telling people this?

[A]

That's why I'm making the podcast. Honestly.

[B]

Yeah, I appreciate It, Yeah, very beginning.

[A]

My wife was like, I don't know about all this. And I was like, are you comfortable knowing this and not telling other people?

[B]

Right.

[A]

It was like, because I'm just not. We got lucky and figured it out and what now we're going to go, like, just off and live our lives and, and know all those people are still, like, being diagnosed or, or forget even being diagnosed at this point. Like plenty of people. I found myself telling a story this weekend and I think it fits here. So give me, give me a second, if you don't mind. Before the podcast was, I guess, somehow online known as a person that if you got in contact with, I had this kind of sharp 45 minute chat I could give you on the phone. It would kind of put you in the right direction. Right. And so people would often say, you know, see someone online struggling, say, oh, you should reach out to this guy, he might help you. And I, I ended up on the phone one day with a woman. Best of my recollection was kind of in her mid-40s, but she was a single mom with like seven kids. Like a lot of kids. And she had type one. So she had type one. And she gets on the phone and says, hey, like, I struggle all the time. People said you might be able to help. I gave her the talk, you know, next day, she reaches back to me and asks if she can text me. I say yes. She sends me a graph. It's super. Like, looks so much better. Asks if she can call for a second and I say sure. She gets on the phone, we're chatting a little bit. She tells me what she did, how it worked. You know, she was happy. And then she just got angry. Like really, like viscerally angry. And I was like, hey, you all right? And she goes, why didn't anybody tell me this?

[B]

Yeah.

[A]

And then she kind of started to repeat it.

[B]

Yeah.

[A]

Like, why didn't anyone tell me? She goes, I have complications. The part I'm not telling you is that during the conversation she, she shared with me, she was worried. Not that she wasn't going to see her kids grow up and have grandchildren. Like, she wasn't sure she was going to get them out of high school. Like she was worried about dying.

[B]

Yeah.

[A]

You know what I mean? And over and over again, the part that stuck with me, that one sentence, why didn't anyone tell me this? And that's kind of how I feel about it now. Like, I sort of feel like with diabetes information, I feel like this. There's a volcano in town, and it's about to erupt. And if I don't tell you all, you're definitely going to get hit by the lava.

[B]

Yes.

[A]

And if I tell you, some of you are going to get away, and some of you are going to decide to stay, and some of you might trample each other in the street, but at least you've all got a fair shake to get away from the lava.

[B]

Yes.

[A]

That's how I feel about this now. So. Because that woman's tone in her voice, she was crying. Why didn't anyone tell me? I've lived with this for 30 years or more. You only talk to me for 45 minutes on the phone.

[B]

Yeah.

[A]

Yeah. Anyway, Wasted time, I find. I find that deplorable. I find it deplorable, wasting people's time, so.

[B]

And that's how I felt listening to the episodes. I would tell my husband, you know, I'd listen to him on the way to the grocery store. I'm like, how, you know, are all these people not knowing this information? Like, this can change everything. It changed our whole way of how we helped her deal with it.

[A]

And it's super simple, too. Like, I'll go.

[B]

It really is. Yeah.

[A]

Let me go on to make this point. I am not some genius telling you some super difficult thing to understand that I just happen to know and no one else knows. And it's. I mean, it's really. It's basically diabetes common sense. You just have to know enough of it to make sense of it, to put it together before you can regurgitate it. But, like, to be a diabetes educator or anywhere in between, to be somebody at a. At a clinician's office who says, come here and we'll help you with your diabetes, who doesn't know at least as much as my dumb ass does.

[B]

Right.

[A]

Is really disgusting. Yeah.

[B]

Really is.

[A]

Anyway, I'm glad you found the information. It was helpful.

[B]

Yeah, me too.

[A]

Seriously, if there's any other nice things you want to say about me, now would be a good time. I'm just kidding. Is there anything else?

[B]

I mean, I just really like the podcast, and I. To everybody, you know, every new mom that comes on the Facebook group. Oh, we just got diagnosed. Diagnosed. Tag the podcast. Tag it in TikToks. There's a really fun girl that I follow on TikTok. I've been telling her she needs to come on here. Addie Taylor, I think her last name is. I know Marley has tried to tell her to go on there.

[A]

Marley's on last week.

[B]

I was. Yep. I was just listening to part two this morning, actually.

[A]

Wait, is Addie the one who does the. She have dark hair and she puts her devices on a lot? Is that her?

[B]

Yes.

[A]

Oh, I like her. I feel like I've been in contact with her. I don't know.

[B]

I tagged you. And she was like, no, I can't do that. And you said, why not?

[A]

Oh, yeah.

[B]

I said, yeah, Addy, why not? She's about to run the New York City Marathon too, so.

[A]

Yeah, some people don't have the, I don't know, long form. They don't want to sit and talk or whatever. Maybe they should listen. Let's be honest. Maybe she thinks I'm an asshole and she's trying to be polite. You know, maybe.

[B]

Who knows?

[A]

You have no idea.

[B]

But we've learned so much from her, too. And so it's, you know, it's great. Yeah, it's a really good. I hate to say it's a really good community to be a part of, but I have not met one person, whether it be through a TikTok, a Facebook group, whatever, that has not been willing to help.

[A]

Yeah, no, I hear you. I think that the community part is super important.

[B]

So, you know, can I ask one.

[A]

More question then, before I. Absolutely, yeah. Yeah. Are you more comfortable in chaos?

[B]

Yes.

[A]

And does calm feel like something bad's about to happen?

[B]

Yes. I'm always waiting for the other shoe to drop.

[A]

Mm, Mm, mm. Catholic, by any chance?

[B]

No.

[A]

No. Okay. So this is just the divorce thing.

[B]

I mean, yeah, it's probably. Yeah.

[A]

Any drinkers in the family growing up?

[B]

Yes.

[A]

Have you ever looked at the Aces list?

[B]

Oh, I score high on that.

[A]

Yeah. Yeah. You've already checked that out?

[B]

Yeah, Yeah, I have. My therapist let me do that. Yeah.

[A]

It's weird because it feels like you're playing an online game where you're winning because you're like, oh, yeah, that's me, that's me, that's me.

[B]

But then you realize I was like, oh, I see. Scored so good. And my therapist was like, no, that's. Weren't. This is not as funny as you think it is, but, you know, you gotta laugh.

[A]

Yeah. So you have that going on. Blah, blah, blah. So has that trans. How has that translated into your parenting? Are you. Are.

[B]

Do you look into joke now that my kids are gonna have to go to therapy because I'm too involved?

[A]

Oh, okay. Way too nice to them.

[B]

Yeah.

[A]

We never had anything bad happen. One time I almost fell, but my mom threw herself under me before I hit the ground one.

[B]

Yes. Yeah.

[A]

I just bounced off my mom and came right back up again to my feet. Yeah.

[B]

Yep. Absolutely.

[A]

It's interesting to know that. Okay, all right. I appreciate you sharing that with me here at the end. Thank you so much.

[B]

You're welcome.

[A]

Hold on one second for me. I wish you would have been horrible because I could have. I could have called this episode Cecilia, you're breaking my heart. Or something like that.

[B]

Oh, sorry to disappoint.

[A]

No, I don't think it's. I don't think you should apologize for it. But really, if you were just a dick one time, I would have been awesome for the title, you know, Say something terrible if you know I'm just kidding.

[B]

It's too early in the morning.

[A]

It is, isn't it? All right, hold on one second. Dexcom sponsored this episode of the Juice Box Podcast. Learn more about the Dexcom G7 at my link. Dexcom.com juicebox did you know that Skingrip has donated over $100,000 in scholarships to help people with diabetes? The people at Skingrip, they know what it's like to live with type 1 diabetes. They know what it's like when your devices fall off at the absolute worst time. And they're here to help. Skingrip.com juicebox Save 20% off your first order when you use my link. That's what you get for being a Juice Box podcast listener. The podcast is also sponsored today by Omnipod5. Omnipod5 is a tube free automated insulin delivery system that's been shown to significantly improve A1C and time and range for people with type 1 diabetes when they've switched from daily injections. Learn more and get started today@ 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@ omnipod.com juicebox thank you so much for listening. I'll be back very soon with another episode episode of the Juice Box Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple Podcasts, please do that now. Seriously, just to hit, follow or subscribe will really help the show. If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card. Would you like a Christmas card? If you've ever heard a diabetes term and thought, okay, but what does that actually mean? You need the Defining Diabetes series from the Juice Box Podcast. Defining Diabetes takes all of those phrases and terms that you don't understand and makes them clear quick and easy episodes. Find out what bolus means, basal insulin sensitivity, and all of the rest. There has to be over 60 episodes of defining Diabetes. Check it out now in your audio player or go to juiceboxpodcast.com and go up into the menu. Hey, do you need support? I have some stuff for you. It's all free. Juicebox podcast.com click on support in the menu. Let's see what you get there. A1C and blood glucose calculator. People love that. That's actually, I think, the most popular page on the website some months. A list of great endocrinologists from listeners that's from all over the country. There's a link to the private Facebook group, to the Circle community and we have a fantastic thing there, American Sign Language. There's a great sign language interpreter who did the entire BUL beginning series in asl. So if you know anybody who would benefit from that, please send them that way. Just go to juiceboxpodcast.com and click on Support. While you're there, check out the guides like the Pre Bolusing Guide, Fat and Protein Insulin Calculator. Oh, gosh. Thyroid GLP Caregiver Burnout. You should go to the website. Click around a little bit on those menus. It really. There's a lot more there than you think. The Juice Box Podcast is edited by Wrong Way Recording wrongwayrecording. Com. If you'd like your podcast to sound as good as mine, check out [e-mail].