#1625 Three the Hard Way

Summary

Juicebox Podcast: Type 1 Diabetes

Episode #1625: Three the Hard Way
Host: Scott Benner
Date: September 11, 2025
Guest: Linda, mother of three daughters dealing with various autoimmune conditions

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Episode Overview

In this heartfelt and informative episode, Scott Benner welcomes Linda—a mom of three daughters, each impacted differently by autoimmune diseases. The conversation centers on Linda's family's journey through Type 1 Diabetes (T1D), Crohn's disease, and antibody positivity, offering insight into diagnosis, management, TrialNet participation, psychological impacts, and the realities of life with chronic illness.

Linda shares the history of her daughters’ health, their diagnoses, and her strategies to manage the uncertainty and emotional toll of raising three children with significant health challenges. The episode offers practical takeaways, emotional support, and a realistic look at being “Bold With Insulin”—all delivered in Scott’s characteristic compassionate and candid style.

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Key Discussion Points & Insights

1. Introduction to Linda and Family Health Overview

• Linda introduces her daughters: the youngest (17, T1D), the middle (20, antibody positive and in TrialNet), and the oldest (22, Crohn's disease and ADHD) [02:24].
  • “My youngest is my Type 1, my middle is 2, antibody positive and in trial Net.” – Linda [02:24]
  • “The oldest one is just keeping their head down. ...She’s got Crohn’s disease.” – Scott & Linda [02:32]
• The family history reveals autoimmune conditions on both sides—hypothyroidism, Raynaud's, and now, these more complex diagnoses.

2. Type 1 Diabetes: The Youngest Daughter’s Diagnosis

• Symptoms and Diagnosis Journey
  Linda recalls her daughter's vague symptoms the year prior (upset stomachs, dizziness). The week before a scheduled well-visit, symptoms intensified, but a nurse dismissed it as orthostatic hypotension [05:37].
  • “Her blood pressure drops when you're starting to feel weird. Drink a Gatorade. It'll help you feel better.” – Nurse, paraphrased by Linda [05:41]
  • In truth, her daughter was nearing Diabetic Ketoacidosis (DKA). [05:54]
• Missteps and ER Diagnosis
  After a sugar-heavy Slurpee led to vomiting, her husband suspected diabetes. Linda was skeptical—there was “no diabetes in our family” [07:08].
  • “Mr. I’m not involved knew that was diabetes.” – Scott [07:23]
  • At the ER, a blood sugar reading of 410 confirmed T1D. She was in early DKA, but with no major complications besides large ketones [10:02].
• Hospital Education and Transition Home
  The family learned diabetes basics: injections, carb counting, ketone management [10:53]. Four years later, management has improved but is complicated by the daughter's anxiety.

3. Anxiety and Mental Health in Diabetes Management

• The youngest daughter struggles with anxiety (predating T1D) and is in ongoing therapy [12:54].
  • Anxiety centers on fear of lows, public alarms, and social attention, which leads to skipped doses at school. She is private about her diagnosis and only recently disclosed it to more friends [13:19].
  • “She worries a lot about going low ...about alarms going off, like when she's in school. ...It's like all social anxiety stuff.” – Linda [12:20]
• Therapy’s main benefit has been improved coping, not the disappearance of anxiety [13:11].
• Scott discusses the possible link between autoimmunity, inflammation, and anxiety, noting recurring patterns among diabetes families [16:13].
  • “If I had an interior design podcast ...and asked everybody if they were anxious, I don’t think as many people would have answered in the Affirmative as ...with type 1 diabetes.” – Scott [17:02]

4. TrialNet and Antibody Positivity: The Middle Daughter’s Experience

• After the T1D diagnosis, the family engaged in preventative screening with TrialNet. The oldest daughter was negative; the middle was GAD65 antibody positive [22:59].
• Over three years, the middle daughter developed a second antibody (insulin antibody) [23:29].
  • One antibody = 20% chance of developing T1D (framed as “80% not likely” by TrialNet).
  • Two antibodies signal high risk—likely progression, but with uncertain timing [24:10].
• Management involves oral glucose tolerance tests and A1c checks every 6 months to monitor progression [24:34].
• Emotional Impact and Planning
  • Linda’s initial anxiety was replaced by sadness with the second antibody [25:40].
  • She worries about her daughter potentially developing T1D as a young adult, away from home [26:27].
  • They consider preventative trials (e.g., Tzield), though they weigh risks, costs, and the desire for a significant delay before committing [27:53].
  • “I’d probably want five years at least.” – Linda, regarding how long a prevention therapy should delay the onset to feel worthwhile [28:56]

5. Crohn’s Disease: The Oldest Daughter’s Struggles

• Diagnosed in June 2024, though symptoms (notably anemia) preceded this by years [32:38].
• Crohn’s impact: dramatic weight loss, malabsorption issues (low vitamin D, iron), and frequent flares exacerbated by stress (notably, her college shutting down programs) [34:18].
• Diagnosis journey involved missteps—initially suspecting T1D (especially after seeing high blood sugars), before GI assessment confirmed Crohn’s [37:15].
• Management & Ongoing Challenges
  • Current regimen: Miralax, Pepcid, vitamin D, iron (tricky to maintain), and Entyvio infusions every 8 weeks [39:34]. Linda and Scott discuss the critical role of iron infusions for severe deficiency (“ferritin was like 12”) [40:19–42:56].
  • Crohn’s symptoms and flares remain daunting; biologics have offered some relief, but daily management is still “horrible.”

6. Family Dynamics and Parental Management

• Linda balances her job as a school secretary with caregiving, daily T1D support, and medical management logistics.
  • “It's just a lot. They’re old enough that they do a lot of it ...for me, it’s a lot of more like support and listening and helping them to figure out.” – Linda [46:27]
  • She’s hands-on for diabetes management (middle-of-the-night juice, carb counting) and helps her oldest navigate the intricacies of the medical system [47:43].
• Her husband is more hands-off with day-to-day, but steps up as needed [49:34].
• Linda intentionally models and teaches self-advocacy, critical thinking, and phased independence—skills she values both for her kids’ health and adulthood.

7. Reflections, Identity, and Coping Strategies

• Linda discusses her own experience with anxiety and depression, including previous antidepressant treatment, but now leans on reading, prayer, and distraction [31:37].
• The show touches on generational, genetic, and environmental contributors to her family’s health patterns and mental wellness.
• Support systems, including the Juicebox Podcast and its online community, play a vital role in Linda’s ability to manage, cope, and find validation [54:41].

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Notable Quotes & Memorable Moments

• On Dismissed Symptoms:

  “Her blood pressure drops when you're starting to feel weird. Drink a Gatorade. It'll help you feel better.”
  Linda recalling a nurse’s advice pre-diagnosis [05:41]

• On Learning Type 1 Was the Diagnosis:

  “She came home and threw up. And then my husband said, she's got diabetes. And I said, no, wait, there's no way. Why would she have diabetes?”
  Linda, on her husband's moment of clarity [07:11]

• On Parental Emotion:

  “I cried when I got the phone call. ...Now it went from, hey, she's 80% not likely to get it to yeah, you're probably going down this path.”
  Linda, on finding out about the second antibody [25:40]

• On Therapy’s Impact:

  “Not as much as we'd like it to. ...Her coping skills for having anxiety are getting better.”
  Linda, about her daughter’s experience with therapy [13:01]

• On Tzield and Prevention Trials:

  “I'd probably want five years at least. ...That would make it feel like, okay, this was worth it.”
  Linda, about what would make prevention treatments worthwhile [28:56]

• On Comparing Chronic Illnesses (Magic Wand Question):

  “I’d probably take away the one. Make sure my middle daughter doesn't get it because she's preventable. The other two are already in it.”
  Linda, on which condition she’d “erase” if possible [51:46]
  “Crohn's seems the toughest to me.”
  Scott, reflecting on the relative burdens of the illnesses [51:54]

• On Finding Support:

  “Very early on then, I became more comfortable with using insulin and understanding how it worked and understood what the doctors were saying. And so it made a huge, huge difference.”
  Linda, about discovering the Juicebox Podcast community [55:10]

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Timestamps for Important Segments

• Family health overview (Linda introduces her daughters): [02:24]
• Type 1 diagnosis story: [04:21–11:04]
• Anxiety and mental health discussion: [12:20–16:46]
• Autoimmunity, inflammation, and GLP analogues: [16:46–19:43]
• TrialNet, antibody progression, prevention options: [22:24–29:00]
• ADHD, mental health, and family coping: [29:51–32:23]
• Crohn’s diagnosis, management, and college troubles: [32:38–39:43]
• Iron deficiency, infusions, and women’s health: [39:56–42:40]
• Parental strategies, division of labor, and support: [46:06–50:05]
• The “magic wand” illness question: [51:10–53:33]
• Value of knowing—TrialNet controversy and knowledge vs. anxiety: [57:34–58:59]
• Closing reflections on support groups/podcast: [54:22–57:15]

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Takeaways & Strategies Shared

• Diagnosis: Trust parental intuition. Persist if symptoms don’t add up; don’t dismiss subtle or chronic changes.
• Mental Health: Address anxiety and depression proactively, recognizing their deep impact on disease management.
• Education: Equip kids early with advocacy skills, knowledge, and self-management strategies; use community resources liberally.
• TrialNet: For families with T1D, preventive screening can reduce fear of the unknown and potentially open doors to clinical prevention, though results may bring tough emotions.
  • “If you can walk into it slowly—it’s valuable to know.”
• Balance: It’s possible to juggle work and caregiving with adaptation, creativity, and persistent communication.
• Support: Find your tribe—Facebook groups, podcasts, and online communities matter, especially when local support may fall short.

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Tone and Style

Scott’s signature humor and candor keep the conversation relatable and light, even as they traverse deeply personal material. Linda is earnest, practical, and open—willing to share her anxieties, sadness, and the micro-victories of keeping three young adults afloat amid complex health needs. The episode blends practical advice, lived experience, and reassurance, punctuated by memorable exchanges and a palpable sense of community.

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For listeners: If you’re navigating chronic illness in your family, this episode offers both solidarity and strategies. Linda’s openness about the ongoing nature of coping, the value of knowledge (even with anxiety), and the primacy of support networks is sure to resonate.

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Transcript

[A]

Friends, we're all back together for the next episode of the Juice Box Podcast. Welcome.

[B]

My name is Linda and I have three daughters. My youngest is my type 1, my middle is 2, antibody positive and in trial Net.

[A]

If this is your first time listening to the Juice Box Podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all, look for the Juice Box Podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management? Go to juiceboxpodcast.com up in the menu and look for Bold Beginnings, the Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. 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 healthcare plan or becoming bold with insulin. This episode of the Juice Box Podcast is sponsored by Medtronic Diabetes and their mini med 780G system designed to help ease the burden of diabetes management. Imagine fewer worries about missed boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started [e-mail] Juicebox this episode of the Juicebox Podcast is sponsored by the TwistAid system powered by Tidepool that features the Twist Loop algorithm which you can target to a glucose level as low as 87. Learn more at twist.com juicebox that's twistwith2eyes.com Juicebox get precision insulin delivery with a target range that you [e-mail] juicebox that's twi I s-t.com juiceboxed this episode of the Juice Box Podcast is sponsored by the Contour Next Gen Blood Glucose Meter. Learn more and get started [e-mail] Juicebox.

[B]

My name is Linda and I have three daughters. My youngest is my type 1, my middle is 2, antibody positive and in.

[A]

Trial Net and the oldest one is just keeping their head down.

[B]

She's got Crohn's disease.

[A]

Nobody gets out clean, huh?

[B]

Nope, none of them.

[A]

That wasn't a joke about Crohn's. That was just. I meant about autoimmune in general. Well, three girls.

[B]

Yes.

[A]

How old are they?

[B]

My oldest is 22 and then 20 and 17.

[A]

Wow. What is it? Can I just. Before we get to the other stuff, what's it like having three daughters that close in age?

[B]

It's exhausting, but fun.

[A]

Okay. Because the fun parts are fun and the exhausting parts are exhausting, right?

[B]

Yeah, that's right. They're great. They get along. They do really well.

[A]

That's awesome. Are you married?

[B]

I am.

[A]

Okay.

[B]

My husband and I have been married for 24 years.

[A]

24 years. Has he ever watched them do something crazy and turn to you and looked at you like, you know, this is like, they get that from you, Right?

[B]

No, he's usually just watching them and very thankful that he has daughters. He never really wanted or felt like he needed a son.

[A]

Really?

[B]

Oh, yeah. Well, then I get to deal with all this stuff.

[A]

Oh, I see.

[B]

And he's. He's a little more hands off.

[A]

Oh. He's like, I don't know about this girl stuff. You handle that.

[B]

That's right.

[A]

Oh, it's his out.

[B]

Yes.

[A]

Is there autoimmune on his side of the family? Your side of the family, Anywhere?

[B]

Yeah. He has thyroid disorder, hypothyroidism. He's never really been tested for antibodies, but his mom also has thyroid issues.

[A]

Okay. We're not sure if it's Hashimoto's, is what you're saying.

[B]

No, we do not know for sure.

[A]

Yeah. Anybody else in the family?

[B]

My mom has Raynaud's.

[A]

Oh, there it is. There it is. A little on both sides. Right. And just. And just like that. Who was diagnosed first?

[B]

The type one.

[A]

The type one. And how.

[B]

How long ago she was diagnosed? Four years ago.

[A]

Four years ago. So she was, like, 13.

[B]

She was 13.

[A]

Did I keep all those numbers in my head? 22, 20, and 17. Wow. I might be good at this before I'm done. I mean, I'm not there yet. I'm having a good feeling. Like, I'm cresting the crest in the hill. Wow. That's something. So she's 13. She gets diagnosed with type one. How does it present? Like, how do you even know she needs a doctor?

[B]

She hadn't been feeling well, so she was two weeks before eighth grade when she was diagnosed. And I would say, looking back over seventh grade, she was just having more days that she just wasn't feeling well. Nothing major, but, like, upset stomachs and that kind of thing.

[A]

Yeah.

[B]

Through the summer, she started having episodes, particularly, like, when she was showering, where would she. She would feel dizzy and like she was going to pass out. So at her, well visit, which was like, two weeks before her actual diagnosis, we talked about it, and they basically just tested her blood pressure, and I think they tested her hemoglobin and said she's Got orthostatic hypotension.

[A]

Okay. Did they not find that odd for a 13 year old?

[B]

Apparently not. The nurse wasn't super concerned. She just said, your blood pressure drops when you're starting to feel weird. Drink a Gatorade. It'll help you feel better.

[A]

But in actuality, she was approaching dka.

[B]

Yep.

[A]

Yeah. So close. We were so close to figuring it out. Well, listen, it's. I mean, Linda, you must know, too. Like, it would. It would be a stretch for somebody off of that to say, well, we should check your blood sugar. You know, that's.

[B]

Yeah, I know.

[A]

Yeah.

[B]

And she wasn't losing weight yet. That's what. Like, after we discharged from the hospital, they brought us right back in and the doctor said she had not had significant weight loss. That's why we didn't look for it.

[A]

Yeah. Well, what happened next, though? I mean. And how much Gatorade did she drink needlessly?

[B]

She was probably drinking one or two a day, which.

[A]

That's how frequently she didn't feel well.

[B]

Yeah, exactly.

[A]

Gotcha.

[B]

So she. She just. Over the next two weeks, she just started getting more and more. You could tell something was wrong. She started to lose weight, although I wasn't. We weren't weighing her to know that for sure, but kind of at the end, you could see that she'd lost a good amount of weight.

[A]

Yeah.

[B]

Yeah. Two weeks later, it's a weekend. It's a Sunday. I know. She's not feeling well. I can see it. The night before, actually, she'd started to feel better. She hadn't been eating much, starting to drink lots of water, and she started to feel better. It was on a Saturday. And went with her sisters to 711 and got a Slurpee.

[A]

I haven't had a Slurpee in forever.

[B]

Yeah, well, they're good. But she came home and threw up. And then my husband said, she's got diabetes. And I said, no, wait, there's no way. Why would she have diabetes?

[A]

Mr. I'm not involved knew that was diabetes. How do you figure that out?

[B]

I think he thought, well, she just drank all that sugar and her body needed to get rid of it. Right.

[A]

Okay.

[B]

So that's his thinking. And I said, there's no diabetes in our family. Why would she have diabetes?

[A]

You didn't say, I should have married a smarter man. That's probably. Is that what you were thinking when he said that you're like dummies. Finally got something to say and that's what he came up with?

[B]

Yeah.

[A]

I really? I've been married a long time. I really feel like I know how you girls think sometimes. So you're like, my mom told me not to marry him. He ends up being right by mistake. A little.

[B]

He was right.

[A]

But once he says that, what do you end up? How do you manage that? Like, how do you. How do you hide your disdain for him and then move forward?

[B]

I just said, no. I said, there's no way she has diabetes. She's got the flu or something. I know something's going on, but. So the next day. I know. Okay, we've got to go back to the doctor. Plan to call Monday morning. And it was later in the evening, like five o'. Clock. And I just looked at her, I said, do you want to go now? And she said, yes.

[A]

Okay. So, yeah, like, she's like, we don't want to wait any. She knew she couldn't wait any longer.

[B]

Yes, she knew. She knew she was feeling so bad and something was wrong. Clearly.

[A]

Gotcha. Did your husband go with you? I. I'd hate for you if he was there. When. When you found out he was right?

[B]

No. No, I went on my own with her.

[A]

Good, good, good. Smart. What was worse? Finding out your daughter had diabetes, that your husband was right about something and you were going to have to tell him.

[B]

Definitely finding out she had diabetes.

[A]

Yeah. No, I know. So you went to urgent care then?

[B]

Well, we went to urgent care, but it was closed.

[A]

Okay. So. Right.

[B]

So then we went to the emergency room.

[A]

Gotcha. Gotcha.

[B]

They tested her blood sugar right away.

[A]

Based on just how she looked.

[B]

Yeah. And the fact I say I kind of gave the same story. She'd been having all this dizziness. This is what they diagnosed her with. She's getting more sick. Talked about how she threw up the night before and her blood sugar was 4 10.

[A]

Wow. Hey, did you mention to the ER people that. ER people. I know there's a better way to say that, but did you mention to them that your husband thought she had diabetes?

[B]

No, I did not.

[A]

No. Okay. I was just wondering if you led them and.

[B]

No.

[A]

Okay. Well, that's. I mean, it's cool. They figured it out right away. She was 410. That's not, like, crazy, right? Was she in decay, though?

[B]

She was, like, just kind of starting the process. She had large ketones. She, like. She didn't have any organ damage going on at all, but she was diagnosed as being a dka.

[A]

Yeah. Wow. Did you hear that story on the podcast recently where the. The kid ended up with Like. Like vomiting up like dead tissue from dka.

[B]

No, I didn't hear that one.

[A]

Don't listen to that one I'm making. It was not first time somebody said that to me. So. Okay, so not. Not too terrible then. I mean, other than the diabetes and being in the ER and everything. But like, could have been worse. How long is she there? What do they tell you? What's the teaching? Like, what do you go home? Understanding?

[B]

So we had to transfer to a different hospital because the first one we went to, apparently they don't do pediatric endocrinology.

[A]

Okay.

[B]

So we had to go to the bigger hospital. So we were there. Went in on a Sunday, we went home on Wednesday. The first 24 hours was really still in the ER the whole time.

[A]

Okay.

[B]

Once we got up to the room. Yeah, they started. We learned how to do injections, how to calculate carbs, all the basic stuff. What to do about ketones, what to do when she's low.

[A]

Yeah. Okay, so just basic, like top level stuff.

[B]

Yes.

[A]

Where would you say you're at now, four years later with your understanding? How's she managing today? How's she doing?

[B]

I think our understanding is much better. She does pretty well. She's got a lot of anxiety that impacts her management. So there are times, like at school, she'll skip dosing at lunch and things like that, but she's doing better. I mean, each year she's gotten better. How about that?

[A]

Do other people in the family have anxiety? Did she have it before the diabetes?

[B]

She had anxiety before diabetes. And yes, there is anxiety in other. In her oldest sister.

[A]

How about the family line too?

[B]

I tend to have some anxiety.

[A]

Gotcha.

[B]

Yeah.

[A]

Are we Irish?

[B]

I have a very tiny amount of Irish in me.

[A]

Just a tiny bit.

[B]

Yeah.

[A]

What is your genre? What background are you?

[B]

I'm half German, a lot of English and that little bit of Irish.

[A]

Okay. I'm not finding common words today. I said hospital people and I asked about your genre, for your background, but.

[B]

I understood what you meant.

[A]

Well, I mean, at least it's. At least it's coming across that way. How does the anxiety impact the management?

[B]

She worries a lot about going low and then not being well, maybe needing assistance. But also she worries a lot about alarms going off, like when she's in school.

[A]

Oh, she doesn't want people to hear the old. It's not even. I would imagine she doesn't even care if they know she has diabetes. She just doesn't want the beeping to bother people.

[B]

She doesn't. Yeah, she doesn't want the noise. She doesn't really love people knowing she has diabetes, so she doesn't tell everybody. She's not very open about it. She doesn't want the attention on her. It's like all social anxiety stuff.

[A]

Are we doing anything for the anxiety?

[B]

Yes.

[A]

What do we do?

[B]

We're working for. She's in therapy. It has been for a while.

[A]

Does it help?

[B]

Not as much as we'd like it to.

[A]

Is it more like the anxiety doesn't get better, but her coping skills for having anxiety are getting better?

[B]

Yes. Slowly she's doing better. So she's told a few more friends about having diabetes.

[A]

Okay.

[B]

Which then helps because she doesn't have to worry about them finding out.

[A]

Ah, gotcha. So you keep it from them. And then there's anxiety about, I'm keeping a secret. Somebody's gonna find out my secret.

[B]

Yeah.

[A]

Oh, I didn't real. That's interesting. I didn't think of it that way. But as far as it just like trying to give people like, like expectations, like you don't go to therapy and somebody talks to you for a while and you're just like, oh, I don't have anxiety anymore. This is awesome. Not like that, right? Yeah. Yeah.

[B]

No. Wish it was that simple.

[A]

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[B]

Yes, I definitely do think that's a possibility and it's something that we've talked a lot about and more. I mean, just, you know how diet can have a big impact.

[A]

Yeah.

[B]

On your mental health. So, yes, I do think that there's very possibly a connection.

[A]

I keep wondering if we're gonna, because of GLPs being used, if people's inflammation is going to get lowered and you're gonna start hearing like, side, you know, like side effects, like, oh, I used to be much more anxious than I am now or something like that. Like, I keep, I keep thinking, like, maybe that's a thing we're gonna hear in coming years because of the population. I mean, it took me some time to interview enough people to, to think out loud, like, wow, a lot of these people talk about anxiety. Like, a lot of them. You know, like, I, I really think that if I had a podcast that, where we were just talking about, I don't know, painting color choices for your interior, but I really am talking around words, interior design. Like, that's it. It's interesting. My brain's doing that today. If I had an interior design podcast and for some reason asked everybody if they were anxious, I don't think as many people would have answered in the Affirmative. As when I'm talking to a bunch of people who are somehow related to or have type 1 diabetes. Like, I don't know. Like, it just, like. So anyway, thinking that that population may have a. A greater propensity for whatever reason, the more things that they do that, you know, we can kind of look back at and go, hey, like, a lot of type 1 started using GLPs in the 20, 23, 24, 25. Like, and hopefully they'll go to maybe a daily pill sooner than later that's as effective as the inject. The weekly injections are like, maybe we'll start hearing back from people like, hey, you know, I used to have this going on and doesn't seem as bad anymore or whatever. I. I don't know.

[B]

But that would be fantastic.

[A]

Yeah, right. Like, I mean, I've had, like, benefits from GLP that nobody. Like, when I took it, like, originally, they were like, here, take this. It'll. You'll lose weight. I was like, oh, cool. Well, I definitely need to lose weight, so that'll be great. And then all of a sudden I was like, wow, my digestion's better, which, you know, makes my elimination better. And that fixes a lot of, like, you know, a lot of problems that you have in your life. And then all of a sudden, I was like, oh, my God, I don't get, like, low iron anymore. And, like, you know, like, you start seeing, like, these benefits, like, piling up, where you see all the women online who are like, oh, I've had PCOS my whole life. I couldn't get pregnant. I'm taking the glp. I'm pregnant now. That kind of stuff. So. Yeah, yeah, no, it's pretty. It's pretty interesting. There is a great episode here where, I mean, and this is a stretch. I'm certainly not saying, like, you should all start taking a JLP if you're bipolar, but there's an episode on here where the mom. A mom comes on for and talks about a child who has type one and is bipolar. And they, you know, we're doing a lot for the bipolar disorder. And they. They made some really good progress with, you know, some understood therapies, but a lot of it still remained. And then the kids started taking the glp and, like, she's like, a lot of the problems she was having just disappeared. And I was like, that's crazy. Like, and that kid was really having trouble. Like, they had to. I. If I'm not mistaken, they had to, like, somehow secure the second floor windows because the girl would have ideas of just like jumping out the window, you know, like, so who knows? Like, I, I don't know. Anyway, it's pretty far away from your, your story, but.

[B]

No, that's right. I would love to see more research. I know they're doing some with type ones. It's very interesting the effects it might have on insulin resistance and.

[A]

Oh, it definitely does that. Like, if you're a type one who has insulin resistance, I think a GLP helps you immeasurably. Arden had been in a situation where for like her needle fears, like, she hadn't taken her GLP in a while. So we adjusted her insulin out, you know, to manage things. But still like spikes at meals, much more, you know, with the same amount of food, same kind of food, much worse spikes, harder to bring back down. A1C starts to rise. Also, you don't realize that when, you know, she started using a glp, like pre bolusing became less and less important. And so then you suddenly aren't using it anymore, but you don't remember, like, oh yeah, I should bolus 20 minutes before I eat this. Because on the GOP you kind of didn't have to all of a sudden and like all these little things together. And then she went back on it Friday this week. So one, two, like four days ago.

[B]

Okay.

[A]

And I gave her not even a full dose. And today I had to adjust back her basal and her insulin sensitivity, so I had to take insulin.

[B]

Yeah, that's all very interesting.

[A]

Yeah, that really is. Okay. So poor kid gets type one. At what point? What happens next? Do you find out that the middle child has antibodies or do you find out that the oldest child has Crohn's? Today's episode is sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed 780G system. The Mini Med 780G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings without increasing lows. But of course, individual results may vary. The 780G works around the clock so you can focus on what matters. Have you heard about Medtronic's extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for and Medtronic has delivered. 97% of people using the 780G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted and they felt less stress with fewer alarms and alerts. You can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting medtronicdiabetes.com juicebox the antibodies came next.

[B]

So after diagnosis we got information about trialnet and I just kind of dove in because everything that happened with her, we missed the diagnosis. I didn't want that to happen again.

[A]

Okay.

[B]

I thought if somebody else is going to get it, I want to be prepared and know that it's a possibility and then be watching more closely. So it was probably she was diagnosed in August and then probably in September. We did the trial net, we did the finger stick, which is not as easy to do as you think it should be.

[A]

The at home thing. Yeah, yeah. I've heard people tell stories.

[B]

So we did the finger stick and my oldest came back completely negative and then the middle was Gad65 positive.

[A]

Oh. So they think how long?

[B]

They don't really know. So she came back positive. Then we had to go do the blood draw so they could test for more antibodies and she was still just Gad65 positive at that point. So this is 2021. She was tested annually after that. And last year she came back with a second antibody.

[A]

Okay, so 2021 till 2024. Just one and now a second now.

[B]

Yes.

[A]

So one antibody, what do they tell you the likelihood of type 1 is like, how do they percentage wise talk to you about it?

[B]

They said it's 20% chance. Well, the way they phrase it to me is she's 80% not likely to develop type one.

[A]

What a nice way to say that it is she now 60% unlikely to develop typhoid?

[B]

Yeah. They've not given me another percentage, but.

[A]

Now they're like, oh, maybe you should start saving your extra supplies now.

[B]

Right.

[A]

Does two indicate that it's probably coming?

[B]

Yes.

[A]

Yes.

[B]

And her second one is the insulin antibody.

[A]

Oh, I see.

[B]

Yeah.

[A]

So the ones that, that you indicate for, they mean a little more than just like you have one or two or something like that.

[B]

Right?

[A]

Yeah.

[B]

Right.

[A]

So what do you do? Does she on like a, like do you put her on a CGM or do you just test your blood sugar once in a while? How do you handle it currently?

[B]

So through TrialNet, she's doing our oral glucose tolerance testing every six months. So she's had that done twice. She actually goes again next week. They recheck her antibodies every time as well. So she's been stable, her A1C was 5.4 both times.

[A]

That's still higher though, than what you would expect, right?

[B]

It is higher than it probably should be. There was no increase in the. Between the two in the six month time period.

[A]

Gotcha. And that's positive?

[B]

Yes.

[A]

Like a pot. Yeah. Not positive, like positive antibody. Yeah. It's a good thing, right? Well, I have two questions, really. My first one's about you. If you're already an anxious person, your anxiety probably led you to trial net. And then you found out she had an antibody. So then you, your anxiety was rewarded for being anxious. Do you see what I'm saying? Like, was that kind of bad for you that. That went that way? Because now do you have that underlying feeling of like, See, it's not anxiety. I'm right.

[B]

No, not really.

[A]

Okay.

[B]

Like when we got the first one back, I guess maybe I was a little bit more anxious then, but then the second one, I was just sad.

[A]

Oh, okay. Yeah.

[B]

I cried when I got the phone call.

[A]

Because you know what it means now.

[B]

Yeah, yeah. Because now it went from, hey, she's 80% not likely to get it to yeah, you're probably going down this path. We just don't know when.

[A]

And you know what diabetes means too.

[B]

Yeah.

[A]

Like, if it was just. If it was the first time, you might be like, okay, you still don't exactly know. Can I ask you, when you think of that, when you think of, like, my daughter is going to get diabetes at some point, probably, what does that mean to you? Like, what do you think's gonna happen to her? Like, big picture, is it. Are you worried about her feelings, about her health, about her, like, you know what I mean? Like what, what pops to mind when your mom worry jumps in there?

[B]

Yes. I mean, I worry about her being anxious about it. She's really not an anxious person. So she's handled it pretty well. I mean, I think about now, okay, at some point this is going to happen. She's 20. Right. So she's gonna be a full adult and on her own likely. So learning how to manage without me there to help will be different.

[A]

Yeah.

[B]

And want to be able that I can still support her through that.

[A]

Yeah, yeah. Plus they're like, you know, you know, when you're that age, you're not like really an adult. You're just like an adult on paper. And then the very first adulty thing she's gonna have to do is you're worried is like, learn how to take care of diabetes.

[B]

Right.

[A]

Which you now know what that means. And I'm assuming you didn't find it all that easy.

[B]

No, it's not. And it's just. She'll be able to learn it and do it. I don't have any doubt about that, but it's exhausting. So I don't want her to have to have that in her life. But if that's what it is, that's what it is. I mean, part of doing this. My goal in doing this is now, like, trial. Not just does the monitoring, but when you hit a certain point, like when you start to be dysglycemic, they have other studies that are going on in Prevention. So how long can we delay it now that we know that it's there?

[A]

Okay. All right. So you're gonna, like. And your daughter's up for that?

[B]

Yep.

[A]

Okay. Are you talking about Tzield?

[B]

She and I have talked about it a little bit. I have mixed feelings about it.

[A]

What are your mixed feelings?

[B]

Well, it's very expensive. I know, but that doesn't mean that our insurance wouldn't cover it. Potentially it would. I know that it's not an easy process to go through. Right. It's intense. But again, if you can delay it, it's probably worth it.

[A]

I think what tzield is, like, 13. I think it's 13 treatments every day. Like, you get an infusion every day for 13 days or something. I could be 14 or something. Don't hold me to it. Often you have to travel somewhere to get it accomplished right now because it can't be done everywhere. So I think I've interviewed a woman who, like, spent two weeks in a hotel with her kid, and they did it.

[B]

Yeah.

[A]

So for that effort, how much time do you want back? Like, if you got to decide how much you got back, you know, I mean, like, is it. If they did that to her and it pushed her diabetes off nine months, would you be, like, what, a waste of time? Like, you know, I mean, like, what number makes it feel valuable to you?

[B]

I mean, I'd probably want five years at least.

[A]

And that would make it feel like, okay, this was worth it.

[B]

Right.

[A]

Gotcha. But they don't have any. There's no data or promises that are made.

[B]

Yeah, no, there's not.

[A]

Yeah. And you talked about that with your daughter, and she's like, it's cool. I'd be up for trying.

[B]

I think she would do it if that was the best option. And I don't know for sure what else trialnet is doing, but they did talk to us about that. They do have Ongoing trials for other stuff, Indiana University, that are prevention based. So I would want to find out what those are and what the techniques are that they're doing and try to decide side effects and all that stuff.

[A]

Yeah, yeah, yeah. Okay, interesting. And when you guys sit and talk about it, I mean, she obviously sees her sister with type one. She kind of has a vibe for it. Like, has she come to you and expressed any feelings?

[B]

Her biggest concern is she has adhd. So her biggest concern is just the managing the daily regimen. Right. Everything she needs to do in a day and not forgetting, not getting distracted. So being able to manage the two things at once.

[A]

Huh? Geez. Adhd. You didn't mention that? No. What else did you not mention?

[B]

I think that's it. Oh, my oldest is ADHD also.

[A]

Do you.

[B]

No.

[A]

Okay. You just have the anxiety piece.

[B]

Yeah.

[A]

Medication for you?

[B]

I do not.

[A]

No. Have you thought that you should ever or. No.

[B]

Many, many years ago. I did some antidepressants for a while that were effective, but I didn't want to be on it forever.

[A]

Yeah. So how effective? Like, what did they do for you?

[B]

Well, I was. I mean, at that time period, I was having more depression issues. So it was more like. You're in a fog. Right. So the antidepressant just helped kind of. I felt like it woke me up so that I could do what I needed to do to get through that time period.

[A]

How long did you take it for?

[B]

I think about a year and a half.

[A]

Pre or post kids?

[B]

Pre kids.

[A]

Pre kids. Were you married then?

[B]

No, I actually met my husband during all of that.

[A]

Oh, you met him during. While you were taking the medication?

[B]

Yeah.

[A]

I got you.

[B]

Yeah.

[A]

Have you felt like that again? Have you felt that fog again since then?

[B]

Yeah, I mean, I go through some time periods where I'm a little bit more depressed than others. I manage. I'm okay.

[A]

Yeah. How do you manage crack cocaine?

[B]

No, no.

[A]

What do you do?

[B]

No, just. I mean, a lot of it, honestly, it's just. I just keep going. I'm busy. But I mean, I love to read. That's something I do that helps me. Lots of prayer.

[A]

So seriously, distract yourself. Kind of turn towards. Turn towards religion, that kind of thing.

[B]

Yep.

[A]

Okay. All right. Any of the kids have that?

[B]

No, they're all more on the. Well, they're more on the anxious side.

[A]

Than more on the anxious side. You know, when you said. When you said more on the. I thought, like, for a second I thought you said. I thought you said, no, they're morons. And I was like, what? I was like, this is so inappropriate. I swear, for like, a split second, I was like, what is this lady doing? She seems so reasonable, and now she's just going to make a dumb joke in the middle of a depression conversation. But, no, that's not what you were doing. So they're just more anxious. Is your husband. Is your husband anxious?

[B]

Oh, no, not at all.

[A]

Not at all. He's just standing up this, like, going, like, I don't know what's happening. I'm just trying to live.

[B]

Yeah, exactly.

[A]

Okay. I want to hear about the Crohn's. Like, when do you figure that out? Is that more recent?

[B]

She was diagnosed a year ago. Like, June 2024.

[A]

What's living like that? Like?

[B]

Horrible.

[A]

Yeah. What is. What are some of the markers of it?

[B]

So for her, again, really, I think we can go back a few years, though, because when she graduated high school, started college, she started having pretty significant anemia. And I think that that was really the start of the Crohn's, because that's one of the hallmarks.

[A]

I see.

[B]

And then. So, like, early 2024, she started having diarrhea and stomach problems. She lost, like, 20 pounds over two months. Because you don't absorb nutrients correctly with Crohn's. That's one of the problems.

[A]

Right. Can't hold it.

[B]

Her vitamin D was low. Like, she was just had all kinds of stuff going on.

[A]

Right. Not absorbing anything. So not getting in her iron. Not getting in her vitamins.

[B]

Yep.

[A]

And losing a bunch of weight, not being able to hold weight even. Did she have weight to lose? I'm sorry to ask like that.

[B]

No, she did not.

[A]

Okay. So. So off of a. What we would call, like, a healthy frame, she lost £20 off of that?

[B]

Yeah. Yeah.

[A]

What did you notice first? Because I don't imagine, like, a kid that age comes to you right away, and it's like, I'm having diarrhea, like. Or maybe they do. I don't know.

[B]

I know she's. She's pretty. Oh. Open with all that stuff with me, so I knew pretty early on. And she was at college as well, which is close to our house. She lived at college, but it was only, like, 25 minutes away.

[A]

Did she remark about being extra anxious, nervous, upset about being at school?

[B]

No, no, no.

[A]

She didn't have trouble with that.

[B]

No, she did not.

[A]

Okay. Okay.

[B]

But she did go through her college significantly downsized in the last year. So, like, she was starting to have her symptoms in February 2024. They made this big announcement that they were basically cutting almost every program. And then she went into what we consider it was probably her first flare, because stress can do that as well.

[A]

Yeah, the stress hit her.

[B]

Yep.

[A]

The college just was like, hey, guess what? Yeah. I know some of you are here for accounting, but too bad. Is that, like, what happened?

[B]

Yeah, essentially.

[A]

Wow. I once knew a group of boys who played baseball at a school, and the school just announced they weren't going to have baseball anymore.

[B]

Well, that's essentially what they did. It's a school, a university, that has two campuses having some financial difficulty. They chose to basically eliminate almost every program and all athletics at the campus she was on.

[A]

Oh, gosh.

[B]

Yeah.

[A]

Did she play a sport, too?

[B]

No, but she was in marching band. She's a music person.

[A]

Right. And they. They cut that as well?

[B]

Yeah, well, they cut everything. So this was like, this last year. She ended up being able to graduate in May, but not with the degree she wanted. Was like their last year. And then going into this next year, they moved everything. They had a small campus close by as well, where they're doing health professions, but that's open and nothing else.

[A]

They went from a university to basically, like, a skill school, for one thing.

[B]

Yep.

[A]

Awesome. You want to badmouth them? Would you like to say the name of it?

[B]

No, that's okay.

[A]

Okay. All right. Well, that's very kind of you. If I ever get Arden back on here and I ask her what she thought of the college she went to first, I'm sure she's going to say some things that are going to be terrible. So very nice you to hold it to yourself. Very upsetting. They don't do it for free, I guess, after they screw over your life's work and plans. Nothing like that. Right. It all still costs the same amount of money. Yep.

[B]

Which still costs money.

[A]

Was she too far along to transfer to go somewhere else?

[B]

She was in a music education program and was trying to. She really had two more years to go, so she was trying to stay there as long as she could, get as many classes as she could, but they kept canceling classes.

[A]

Okay.

[B]

So she ended up graduating with a bachelor's in music.

[A]

I thought you were gonna say she's an actuary, but go ahead.

[B]

No. And now she's going to go back to a different school to do post bachelor's teacher certification.

[A]

Oh, you get to pay more money.

[B]

Actually, the state will help pay for this one.

[A]

Awesome. Because they know you got screwed.

[B]

Well, they need teachers.

[A]

Oh. Oh, I see. I see. Well, that's nice, but wow, that sucks. Geez, life's already hard enough. You're pooping your pants and this happens on top of it. Like, awesome, by the way, is how it would have occurred to me. I'm sure she went to you at one point and said, is anything ever going to go right for me? Right.

[B]

Yeah. I mean, she definitely had those feelings. Yeah. So she's going through all this. It took us. It took us a few months, couple months to really figure out what was going on. We actually looked at type one again. She still had no antibodies, but her. I actually. I put a CGM on her when she started going through all of this. And she was having high blood sugars, but we have learned that Crohn's can impact that as well.

[A]

Before you knew it was Crohn's, you panicked a little bit about the diabetes, by the way. With good reason. And she had high blood sugars. You must have been distraught when you saw those high blood sugars.

[B]

Yeah, well, I figured this was it. She was going up to, like, 200 after some meals and also going lower. Like, she was kind of all over the place.

[A]

Unreal.

[B]

Her primary did a oral glucose tolerance test, which wasn't done correctly in my mind, but because they did a. They did a fasting, and then they did a two hour. They didn't do anything in between.

[A]

Okay, so you didn't. Did you say anything while it was happening? That you're like, hey, I don't think you're doing this right?

[B]

Well, I asked what they were going to do, and the lab tech just said we can only do what the doctor ordered.

[A]

Are you starting to wonder if anything's ever going to go right? Yeah.

[B]

Or if people can do it correctly?

[A]

Yeah, that isn't going to happen.

[B]

Yeah. So we did see an endo who. Her primary did recheck antibodies for us, so we saw an endo who did say, no, this doesn't look like diabetes. Check some other stuff like her cortisol. And she had so many tests in that time period.

[A]

I'm sorry.

[B]

Checked for celiac and ended up at gi. Who actually figured out it was Crohn's because she had multiple ER visits from the pain that she was in.

[A]

Yeah.

[B]

And they did CT scans that found the inflammation.

[A]

And then what's day to day management look like for that?

[B]

She drinks Miralax every night just to help make sure she stays regular, because you can have either constipation or diarrhea. She's on, like, Pepcid. She Takes supplements. Like she's got her vitamin, vitamin D. I think we figured out an iron regime that is helping, but it's not perfect. That's been a very tricky one. She is on a biologic.

[A]

Which one?

[B]

So she has. She's on intibio.

[A]

Okay.

[B]

And so that's an every eight week infusion, and that has helped tremendously.

[A]

Yeah. You've noticed a bump in her health from that?

[B]

Yeah, definitely.

[A]

What do you think it's doing for her?

[B]

It's decreasing all the inflammation.

[A]

Okay. Have you tried getting her an iron infusion instead of the iron tablets?

[B]

We've talked about a little bit. What, what we're doing right. Or what she's doing right now is she does a. The pill every other day and she's doing a liquid then on the off days because the liquid does absorb better for her.

[A]

Yeah.

[B]

So that helps. But her ferritin's still a little low.

[A]

How low would you tell me if you knew?

[B]

Oh, she just had it done. It was. It was like 12.

[A]

Yeah, that's really low. Is she tired all the time?

[B]

Yeah, yeah, she is.

[A]

I'm telling you. Try. Try the infusion. You take a 12 ferritin to a doctor and say, hey, look, we'd love to, you know, here's her low iron symptoms. Lay them out and say, like, you know, I'd love for you to write her a prescription for an iron infusion. Try it one time. Because I've gone through them a number of times and they are restorative. And maybe once it was up higher, maybe the system you're on would help her stay up.

[B]

Yeah.

[A]

Because I don't know how to grow from a 12. And if you haven't heard, I think it's in a thyroid episode with Dr. Benito. She very strongly believes that a woman of. Of menstruating age, the minimum your ferritin should be is 70.

[B]

Yeah. Pediatrician had told us once when she was dealing with anxiety stuff and her anemia and she was anemic, that we should shoot for 75 for Ferritin.

[A]

Yeah.

[B]

Getting other doctors to buy into that has been tough.

[A]

Just tell them to say, listen, you go like this. You go, Linda, you say, listen, shut the up and just do it. Like, what do you care?

[B]

This is what I want.

[A]

Yes, but what do you care? Just try it and see. You know what I mean? Because there's a whole generation of women walking around with their ferritin too low and nobody takes it seriously, and it's terrible. And not just for your daughter, because of Crohn's, but, like, people who have heavy menstrual cycles, all kinds of different things. As a lot of tired ladies out there who could be helped, and a lot of physicians who just go, like, you look like you're good. You're in range like a 12 fart and insane. I almost passed out when my fern was 12.

[B]

Yeah.

[A]

Yeah. I don't know how she's dealing with. Is she what they call snippy?

[B]

No, not usually.

[A]

Not usually because that's what happened to me. Oh. My farting got too low. I turned a little. Like, I complain. I would just, like, I'd be terrible about things. And then you bring my fart and back up. It just completely went away. Now I'm just a regular level of terrible now. But seriously, like, that's one of the ways it affected me. Also, I'd get lightheaded, cloudy. I'd be exhausted by 1, 2 o' clock in the afternoon. I couldn't get rested. Like, she's having those things. I'm telling you, you hit her with one of those infusions, and then her body gets one chance to remake. Because, you know, your body remakes blood cells all the time.

[B]

Right.

[A]

So the next time her body builds new blood cells and is building it with enough iron, ferritin, etcetera, in her system, everything that's going to come with that infusion, those red blood cells are going to carry oxygen better, and boom, she's going to just feel better. It's crazy.

[B]

She'll feel great. Yeah, yeah.

[A]

Do it. Trust me. Make somebody.

[B]

Yes, I will talk to her and have her reach out to her.

[A]

I don't put her in the charge. She's 22. She'll never do it.

[B]

I know, but she has to do all the interaction she's done. She's actually done great. She's learned a lot over the last year with dealing with the medical system.

[A]

Nice. Good. I'm glad. Yeah.

[B]

I mean, it's obvious, talking to doctors. Yeah.

[A]

Yeah. I actually have to call a doctor for Arden when you and I get done because Arden doesn't have a voice. She just had her tonsils out.

[B]

Okay.

[A]

Tomorrow's a week ago. And you think, oh, tonsils. That doesn't sound bad. As an adult, not a fun thing. So.

[B]

Yeah, I've heard it's bad.

[A]

Yeah. There's a referred pain that gives you, like, terrible ear pain on top of the fact that the. Where they slice the tonsils off. Like, they can't stitch it up or anything like that. So it just heals over. Then eventually you have scabs in the back, and then they have to get. It's just. It's been six days so far. And Arden, who is really good with pain, like, just. I think having autoimmune issues makes you maybe a little more accustomed to not being comfortable sometimes, right? You know, joints and things like that sometimes. And she's like, every four and a half hours, she's like, it's almost time for my pill again. Like, if I wait too long, it's gonna be terrible. And then the. The referred ear pain gets. She said it feels like. She's like, you ever, like, put a Q tip in your ear and it goes in too far and, like, feels like it pokes the back, and that's sharp pain. I was like, yeah. She goes, it's just like that all the time. And I was like, oh, geez, it's so terrible. Like, so nevertheless, I have to call and, you know, her doctor for something. But she. She tried to speak yesterday for the first time on, like, the fifth day, and she said. She wrote down. She's like, that was not a good idea. That hurt really badly. I'm not doing that again. So anyway, she hasn't spoken in a week.

[B]

That would be very hard to do.

[A]

Yeah, it would be tough for me. Although they've been doing a lot of different things. I get a lot of texts with long descriptions. We have a portable whiteboard she's writing stuff on constantly. Last night, her girlfriend found, like, a translation tool or something that speaks it out loud. So there was just a robot voice in the house last night saying stupid things for a while. There's a lot of stuff was going on. Yeah. Do people call friends who are girls girlfriends still, or is that a thing? I remember my mom saying my girlfriends. Do you call your friends girlfriends, the girls?

[B]

I don't. And I don't think my daughters do that.

[A]

Yeah.

[B]

But it is something that when I was young, people would say.

[A]

My grandma would say, I'm gonna stop saying that. Then her friends. Anyway, her dumb friends were over yesterday. Then they were doing that. Okay, so we have it laid out here. We understand the lay of the land for all three kids. So I want to spend the rest of the time talking about how you are. I don't know. Managing is maybe the wrong word, but, like, how are you. I guess managing is the right word. How are you managing the unknown part of your middle daughter's half diagnosis? Is your younger daughter feeling any certain way about her sister getting type one at some point. How do you manage in general with all these health issues going like, do you have a job?

[B]

Yes, I do.

[A]

Oh my God. You shouldn't have to have a job.

[B]

Yeah, there are days I've had that thought.

[A]

Yeah, there should be some sort of societal agreement where like your three. Your three girls have three different autoimmune issues and you're like, ah, you know what? You don't have to work anymore. Like, how do you manage this whole, like, can I just say cluster? How do you manage this entire mess?

[B]

It's just a lot. They're. They're old enough that they do a lot of it. So for me, it's a lot of more like support and listening and helping them to figure out. Like, when my oldest is dealing with doctor stuff, I go with her to most of it and I've told her I'll do that forever. I don't care. I mean, I know she can handle it, but I'm here to support you. Just looking at test results with her and helping her then to figure out I should talk to my doctor about this, you know, giving her that kind of guidance so that she can be independent. My daughter with type 1, I'm still decently hands on. She does everything on her own. But I do help with carb counts. I help her when she's high, trying to get her back down in range. And I'll get up in the middle of the night and give her juice. I don't know, I guess I just do it a lot of texting so that when I'm not there, like, if I'm at work, I actually changed. I didn't leave employers, but I changed my job a year and a half ago. And part of my reason for wanting to is so that I had a little bit more access to my phone because I work in a school and I was more in a classroom before. Now I'm the secretary, so I have more flexibility to respond when they need something.

[A]

So you've adjusted your life a little bit, but moreover, you're just telling the kids, like, look, I'll be there for you as long as you need. Like, but you're actually going through things which I think is important. You're not just like, like, oh, the doctor said this. Then you just wander off and don't. Like, you're actually considering what's going on and trying to teach them at the same time how to think about it.

[B]

Yes.

[A]

That's awesome. Where did you figure that out? Like, did you have like a good parent or something?

[B]

Well, I did have good parents. Yeah, I. I don't know. I mean, I just. I think it's just me. I mean, I knew that I'm gonna support them and I mean, I didn't go through health stuff like this when I was a kid, but.

[A]

Yeah, you didn't have anything at all growing up?

[B]

I had asthma.

[A]

Asthma. And. Oh, and the anxiety when you were younger as well?

[B]

Not as bad. I mean, it's not like I'm bad. I don't want to use that word. It's there.

[A]

It wasn't as intense as it is now. Yeah, I gotcha. Do you have an idea of what age that came on?

[B]

High school time period was probably the hardest.

[A]

Do you remember anything happening, like traumatic or life changing?

[B]

I moved between my freshman and sophomore year and changed high schools and that was not easy.

[A]

Like your family just moved or was. No. Like your parents get divorced?

[B]

My dad was a principal at a school, a really, really small high school that closed, like right before school opened. They decided to close. So then he didn't have a job. We moved. We were in New Mexico. Then we moved to Ohio to live with my grandmother. And then so I suddenly had to go to a brand new school where I knew nobody. Okay, so that was tough.

[A]

You found that tough?

[B]

Yeah.

[A]

Yeah. I'm trying to decide if all of this would be helped a little if your husband was a little more involved. Like, do you ever wonder if, like, hey, like, it's fun that we've been doing it like this, but there's a lot going on here, buddy. Maybe you need to like, jump in.

[B]

Sometimes I think that, and like, he's fine. Like, if I'm not here, he's going to take care of people, right?

[A]

Yeah.

[B]

If I, if I go away, like I, I go away with my friends once a year for a weekend, he's going to make sure that he wakes up if she needs a juice, you know?

[A]

Yeah, he's.

[B]

He's going to make sure that everything's safe and taken care of. So I do appreciate that. I think he just kind of looks at and thinks that I've figured it out, it's all under control.

[A]

What about the long term worry about the kid with the two antibodies or the, the impacts of the Crohn's? Like, do you conversate with him about that?

[B]

We do. I mean, I think he worries more about our, our daughter with the Type one just because, I mean, her management is okay, but it could be better.

[A]

Yeah.

[B]

And she's young, so she's looking at the here and now, what helps me with what I need in the moment, whether it's anxiety wise or whatever the situation is and not really thinking about what my life be like in 10 years.

[A]

Yeah.

[B]

You know.

[A]

Yeah. She's not worried about a higher blood sugar and what it means when she's 35.

[B]

Right?

[A]

Yeah.

[B]

Right.

[A]

And that's.

[B]

She, she, she has gotten better, but. And then you go to the endo. We were last actually at the endo in February. Her A1C was 6.9.

[A]

Oh, that's not. Listen, that's pretty great.

[B]

Not horrible. Right. I hear what you're saying, it could be better. And then the endo just says, oh, you're doing so great.

[A]

That's all they say. They say that to everybody, by the way.

[B]

Yeah.

[A]

You could have a 13.9 and they'd be like, you're doing great. And anywhere in between. I don't think I've given a pretend magic wand to anybody and asked a question in a while, but Crohn's type one, the knowledge that type one is coming. Which would you take away if you could only take one away from somebody? Ooh, that's tough because I have my answer. My answer's never what your answer is, but I'm still. I got mine. I'm ready.

[B]

So if I'm dealing with what we already have right now, I'd probably take away the one. Make sure my middle daughter doesn't get it because she's preventable. Interesting, right?

[A]

Yeah.

[B]

The other two are already in it.

[A]

I always love people's answers. I would do Crohn's.

[B]

It's tough.

[A]

Crohn's seems the toughest to me.

[B]

Yeah.

[A]

I mean, having. I want to be clear. I don't have Crohn's or type 1 diabetes and nobody's telling me I'm about to get type one. So this is all from a very academic point of view. No one's ever said the thing I'm thinking so far, but yeah, that Crohn's seems like. It just seems terrible.

[B]

It is horrible.

[A]

Yeah.

[B]

Ideally, as she continues the biologic, she can get in remission and be like, feel pretty normal, Right?

[A]

Yeah.

[B]

But I know, like my mother in law, when we got the diagnosis for Crohn's said, oh, you know, I know it's bad, but I think it's far worse to have diabetes. And honestly I kind of thought, I don't know about that. Because we know that we can manage diabetes. You can feel okay if you're taking Care of yourself. Right.

[A]

Yeah.

[B]

Crohn's is kind of like, oh, I should not have eaten that. And now I'm in a flare and I'm in intense pain. Little things can happen.

[A]

Yeah. It could last a week or more, too, right. When it first.

[B]

Yeah, definitely.

[A]

Yeah. It's funny, I almost feel like a hypocrite because I am very much a person who. I don't see any value in comparing people's struggles. Do you know what I mean? But I was just. I asked because you're the mother of all three, and I thought, like, what is your perspective on this? I'm assuming that you would, you know, try to use the magic wand to make two more magic wands, and then.

[B]

I. I would help everybody out, make them all better.

[A]

Exactly. Exactly. There's two people who already know what it's like to live with this, and they're getting through it. If you could make a wish, you'd make a wish that. If you could only impact those three people and those three things, that they. The one person didn't get it. Yeah.

[B]

I'm sure that they would think that's not fair. The two that are already dealing with stuff. Right.

[A]

But, yeah, no, I mean, I could make. I'm sure they can all make a compelling argument for themselves.

[B]

Yeah, they could.

[A]

Yeah. Well, that's interesting. Oh, gosh. Is there anything we haven't spoken about that we should have?

[B]

I don't think so.

[A]

We're doing okay?

[B]

Yeah.

[A]

Yeah. You. You comfortable?

[B]

I am.

[A]

Good. Good, good, good. I had to figure out there's. You have, like, a little pause before you answer. I stepped on you a couple times earlier till I figured out your pause. Some people pause because they have nothing to say, and some people pause before they speak. This probably sounds pretty academic to people, but pretty obvious. I got confused with your pause twice where I thought you weren't going to say anything, but then I realized you were collecting your thought. So I apologize if I did that earlier. But how do you find out about the podcast?

[B]

When we were in the hospital at diagnosis, I don't remember who a nurse social worker is. Somebody said, oh, there's support groups on Facebook. So I googled or I went in Facebook and searched, and yours came up. And so then I found the Facebook group and then the podcast, and very early, so it was super, super helpful.

[A]

You went to the Facebook group first?

[B]

Yeah, I was in the Facebook group first. Found out about the podcast. I think I kind of just started at the beginning.

[A]

Okay.

[B]

Before I realized that there were different series. And. Yeah, and it was four years ago.

[A]

So everyone should start at the beginning, first of all, because Scotty needs the downloads. But. But, yeah, I just didn't know, like, the people's pathway to it, so she didn't. The nurse didn't specifically say, go find juice box. She said, go find support.

[B]

Yeah.

[A]

You Googled and founded Facebook or you searched in Facebook?

[B]

I think I went on Facebook and searched type 1 parent support groups. So it helped because very early on then, I became more comfortable with using insulin and understanding how it worked and understood what the doctors were saying. And so it made a huge, huge difference.

[A]

That's awesome. That's really great. And you actually made it from the Facebook group to the podcast, which is, by the way, the most difficult transfer. Hold on a second. My wife is overseas at work. Hey, Kel, I'm recording the podcast. You can say hi to Linda real quick, and I'll call you back in two minutes.

[B]

Okay. Hi, Linda. Hi.

[A]

Linda said hi, but you can't hear her because I have headphones on. So I'll call you back in a minute. You want to check on Arden? She feels nauseous and dizzy right now from the pain. I'm going to get down to her in a second. Bye. My wife has had to travel so much for business lately that as she left, I was dropping her off at the airport, and she's just looked at me like she was 10 years old, and she's like, I. I don't want to do this.

[B]

Just want to be home.

[A]

I was like, just get on that plane. It's like, we're almost done. Like, 10 more years. We'll retire. That's the first time anybody's ever heard Kelly's voice. That's interesting. Yeah. Oh, well, you're the first one, Linda. I'm sorry. The hardest translation to make is from Facebook reader to podcast listener.

[B]

Okay.

[A]

Like, so it's hard. It's. I used to think about, like, I used to think I had, like, an ecosystem, which I do, but, like, the Facebook group and the podcast. But I used to think of them as, like, one thing. It took me a while to realize they are two completely separate entities. And. And that there are certain people who prefer audio and certain people who prefer reading, and there's not as many crossover people who prefer both, who like both. So. Anyway, it's always interesting to me how people find their way to the. To the audio.

[B]

I was not a podcast listener.

[A]

Yeah.

[B]

So I think yours might have been the first podcast I ever really listened to. But yeah, it was good and exactly what I needed. Cool.

[A]

That's awesome. I'm glad to hear it. Yeah, I appreciate you sharing this story too. And I want to just check one more time because I took you all over the place. Did this go anyway, the way you expected it to, or.

[B]

Well, not entirely, but I got what I had in mind.

[A]

Okay. If I put you in charge of this, I made you the producer, what would I have asked you about and stuck to?

[B]

I don't know. Oh, that's an interesting question. I got like, I wanted to talk about the diagnosis in trialnet. There's so much controversy about trialnet that I see in the Facebook group that that was part of. I really just wanted to share our experience because it's been a positive experience.

[A]

What do you think the controversy is with people just talking about, I don't want to know versus I want to.

[B]

Know whether or not you should know or not.

[A]

Well, I mean, you're an anxious person and, you know, is it valuable knowing.

[B]

Yes. I'm very thankful because we can either find those prevention methods and delay, or when it's inevitable, we're going to be able to walk into it slowly.

[A]

I have to tell you, that's how I think about it. And I think it's interesting that a person who finds themselves being anxious thinks the same way, because I would think that the. Again, I've said now said academic like five times. But the academic argument against that would be like, well, if I'm an anxious person, it gives me more to be anxious about. But I don't think that's true at all. Like, once your one kid's got type one, your other one's got a different issue that, you know, also seen as inflammation related. Right. Crohn's right. You gotta start looking at the third one thinking like, oh, like something's gonna happen. And then there's that anxiety, the never knowing. Right. Am I right?

[B]

Yeah. No. Yeah. I think I would worry anyway.

[A]

Yeah.

[B]

So now every little thing. Yeah.

[A]

At least now you have good information. If you're gonna be concerned about something, it's not. And then it's not just mindless worry, it's actual thoughtful planning.

[B]

Right?

[A]

Yeah. That's all. So you would tell people do it?

[B]

Yes, I definitely would.

[A]

All right, There you go. I like, by the way, when I asked you, like, did this go the way you expected? You said no. I said, well, how should it have gone? You went, I don't know. Reminds me of, have I ever told you guys how I paid for My wife's engagement ring.

[B]

I'm not sure.

[A]

I don't think I have. So we got married without an engagement ring because we were poor. And actually, my wedding band and her wedding band, I think we paid $50 for both of them in our friend's living room because their friend was a jeweler. I'm making air quotes. It's possible my rings are stolen. I'm not sure exactly, but I wanted to get my wife, like, a real ring, but we were married with just bands. And then by the time she was pregnant with Cole, we'd been married for four years maybe, and we were nowhere near getting, like, you know, like, an engagement ring.

[B]

Right.

[A]

And I. We, you know, planned for me to stop working, but I had this, like, enough of a skill from my job that I thought if I could just get two, maybe three freelance gigs after I'm done working, I could pocket all that money and buy her a ring with it.

[B]

Right, right.

[A]

I ended up doing that. And by the way, at that point in my life, I was doing graphic design. Not well for a credit union.

[B]

Okay.

[A]

But, you know, I did. I picked up, like, three jobs. And I at one point thought, well, maybe I'll just keep doing this on the side. Like, you know, it's a little extra. I did three jobs, and I made. From remembering correctly, I made $10,000 over those three jobs. Like, it was, like, months of work, and, you know, it was fine. But what I noticed over and over again, because now I was doing designing for different people, not just, like, the guy I used to work for in the department I was in. You get hired based off of your samples. And people would say, oh, I love what you do. I'd like you to do something for me. And then you'd give them a. You'd say, here, here's my vision for this. They go, oh, no, not that. And then I'd say, oh, okay, then what then? And they go, oh, I don't know, but not that. And I remember sitting in a meeting once where I actually had to bring coal in a carrier. Okay? So I want you to imagine I've got coal in a carrier. I'm designing this postcard for this, like, bank or something like that. And I pull it out. It's exactly what they asked for. I am telling you, it is exactly what they asked for. And I put it down, and the woman goes, no, that's not right. And I said, it's exactly what you said. You said you wanted this here. This here like this. You wanted this larger than that this is exactly what you wanted. And they were like, yeah, no, that's not right. And I said, well, what do you want? She goes, I don't know. But not that. And I remember in my mind thinking, you, mother. And like, I just said, I was like, and, and it's when it hit me, like, people don't know what they want. They just know what they don't want.

[B]

Right?

[A]

Anyway, that's how it made me feel when you said, when you said, no, this did not go the way I expected. How should it have gone? I don't know.

[B]

Oh, no.

[A]

So anyway, I promised Linda I wasn't going to curse, and then that went right out the window. Do you curse at all, Linda? Would you like to curse at all? I'll bleep it out.

[B]

No, I, I, I don't.

[A]

No one would know if you did. Like, I'll make sure it gets bleeped out completely. This is your one chance to say something terrible out loud. No one will even hear it.

[B]

No, that's okay.

[A]

Oh, that's so lovely. You're lovely. Hold on one second for me. You were terrific. Thank you.

[B]

Yeah.

[A]

I'd like to thank the blood glucose meter that my daughter carries, the Contour next gen blood glucose meter. Learn more and get started [e-mail] juicebox and don't forget, you may be paying more through your insurance right now for the meter you have than you would pay for the Contour next gen in cash. There are links in the show notes of the audio app you'll listening in right now and links@juicebox podcast.com to contour and all of the sponsors. Thanks for tuning in today and thanks to Medtronic Diabetes for sponsoring this episode. We've been Talking about Medtronic's MiniMed 780G system today, an automated insulin delivery system that helps make diabetes management easier day and night. Whether it's their meal detection technology or the Medtronic extended infrastructure infusion set, it all comes together to simplify life with diabetes. Go find out more at my link medtronicdiabetes.com juicebox the episode you just enjoyed was sponsored by the Twist Aid system powered by tidepool. If you want a commercially available insulin pump with twist lube that offers unmatched personalization and precision for peace of mind, you want twist. Twist.com juicebox I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of the Juice Box Podcast hey kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy? The private Facebook group for the Juice Box Podcast. I know you're thinking, oh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juice box podcast type 1 diabetes on Facebook of course, if you have type 2, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in. We make sure you're not a bot or an evildoer, then you're on your way. You'll be part of the family. The podcast contains so many different series and collections of information that it can be difficult to find them in your traditional podcast app sometimes. That's why they're also [e-mail] Go up to the top. There's a menu right there. Click on Series Defining Diabetes, Bold Beginnings, the Pro Tip series, Small Sips, Omnipod 5, Ask Scott and Jenny Mental Wellness, Fat and Protein Defining Thyroid After Dark, Diabetes Variables, Grand Rounds, cold win, pregnancy, type 2 diabetes, GLP meds, the math Behind Diabetes, Diabetes Myths, and so much more. You have to go check it out. It's all there waiting for you, and it's absolutely free. Juicebox podcast.com the episode you just heard was professionally edited by wrong way recording wrongwayrecording.com.