#1889 Let Them Eat Cake

Summary

Juicebox Podcast: Type 1 Diabetes

Episode 1889 – "Let Them Eat Cake"

Date: June 29, 2026
Host: Scott Benner
Guest: "E" (Mother to a daughter diagnosed with Type 1 Diabetes at 10 months, also has celiac disease)

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Overview

In this engaging and candid episode, Scott Benner speaks with E, a mother who shares her intense, multifaceted journey raising a daughter diagnosed at 10 months old with Type 1 Diabetes and later celiac disease. The conversation is wide-ranging, touching on E’s own cancer experience, family autoimmune background, struggles with infant diabetes management, navigating celiac diagnosis, school accommodations, and the emotional realities of parenting and self-advocacy in chronic illness.

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Key Discussion Points & Insights

1. Introduction & Family Background

• [05:02 - 09:47]

  • E introduces herself: mother of four; her daughter, diagnosed with T1D at 10 months, just celebrated her 9th diabetes anniversary, also has celiac disease.
  • Brief background on potential but undiagnosed family autoimmunity and personal health: E had papillary thyroid cancer shortly before her daughter’s diagnosis.
  • Discussion about underdiagnosed family members avoiding doctors and E's own experience with thyroid issues and Synthroid.

  “We all did get genetic testing after she was diagnosed...I have one of the genes and they said it could at some point potentially become celiac, but they said unlikely because of my age.” – E [05:33]

2. E’s Papillary Thyroid Cancer and Survival

• [09:47 - 19:52]

  • Diagnosed six months before daughter's T1D diagnosis, just after birth of her youngest.
  • Recounts the diagnostic journey (symptoms dismissed as postpartum or pregnancy-related, serendipitous ultrasound) and the emotional impact.
  • Community support: Connection with a sorority sister who'd faced similar circumstances was key to coping.

  “I was lucky enough that one of my sorority sisters...I reached out to her even before I officially had gotten the diagnosis and was like, I need all your information. I'm about to drive myself insane googling and being scared.” – E [15:05]

  • Describes swift transition to cancer patient, surgery, and post-surgical uncertainty—leading directly into her daughter's diagnosis.

3. Infant Diabetes Diagnosis: The Shock and Aftermath

• [20:13 - 29:48]

  • E’s daughter’s T1D diagnosis: described classic chaos—exhausted, juggling young kids, missed early symptoms due to breastfeeding and night shift husband.
  • Her instinct was that the baby simply had a stomach bug; the reality was much more dire.
  • The pivotal moment: a nonchalant call to the pediatrician leads to an ER visit where her infant lay undiagnosed in severe DKA for hours.

  “They were just like, we need to save her life first. They were like, do not worry about [nursing].” – E [28:30]

  • E describes intense trauma, feeling her daughter’s future was shattered and grappling with the unknown.

4. Managing Diabetes in Infancy

• [32:53 - 42:04]

  • Post-discharge challenges: Hospital staff and diabetes educators provided poor support, especially with managing an exclusively breastfed infant.
  • A particularly problematic CDE suggested, “Why don’t you just give her Entenmann’s cake?” to reach the minimum carb count for insulin dosing—a suggestion that becomes the episode’s title.

  “She told me I should give my kid cake to try and get...to give her enough insulin. And I was just like...no. I’m not giving my kid cake for breakfast just to give her half a unit of insulin.” – E [35:55]

  • E attempted sophisticated workarounds: practicing micro-dosing with syringes, manually dividing insulin doses, but her baby still ended up in DKA again due to practical dosing limitations.

5. Transition: Medical Systems, Moving, and Pump Technology

• [51:27 - 54:56]
  • The family moved between New York and New Jersey, impacting care continuity.
  • Insurance barriers: Couldn’t get diluted insulin prescribed in NY; in NJ, a supportive endocrinologist arranged for diluted insulin and a pump swiftly.
  • Early use of CGMs (started at 1 year old) provided massive relief.

6. Celiac Disease Layered On

• [45:23 - 50:48]

  • Celiac diagnosis at age 3, discovered after chronic constipation and mysterious drops in insulin requirements.
  • E describes managing two complex conditions: primarily cook at home, careful with cross-contamination, and supportive school/friend environment.
  • Anecdote: A trip to Paris leads to her daughter’s first (and only) real gluten exposure (despite diligent research and translation cards).

  “At home we really manage pretty easily. It just takes the spontaneity out of your life because if you don’t have food on you, you kind of can’t just go anywhere.” – E [48:58]

7. Day-to-Day and Developmental Milestones

• [56:03 - 70:24]
  • E discusses the mental load of planning for school tests, scheduling around dance, and day-to-day logistics.
  • School accommodations: Frustrations with “black and white” legalistic approaches; school refused to let daughter independently dose with oversight unless designated “independent” in official forms.
  • Diabetes and celiac as differing burdens: Diabetes is more demanding logistically and emotionally.
  • Daughter’s confidence: Proudly wears CGM and pump, self-doses at extracurriculars, and has supportive friends.

8. Family Dynamics and Coping

• [59:09 - 63:30]
  • E’s husband assists when needed—he’s more aggressive (“rage boluses”) while E prefers incremental adjustments.
  • Siblings: All tested regularly; none have developed autoimmunity so far.
  • Emotional honesty: E admits some days are just hard, but overall she maintains a hopeful, pragmatic outlook.

9. Hope for the Future & Podcast Impact

• [61:08 - 63:46]

  • Both E and her husband found hope listening to the "Cured: Patient Nine Speaks" episode about islet transplantation.
  • She discusses realistic expectations for cures, seeing incremental research as hopeful steps for her daughter’s lifetime.

  “This is the first time I’ve heard something that sounds like there’s a potential for a cure in her lifetime...it’s the first time I felt like there’s an end in sight.” – E [61:25]

10. Helping Others, Podcast Community, and Resources

• [76:35 - end]

  • E is an active, enthusiastic connector—frequently referred to new T1D parents by doctors and teachers, and shares Scott’s podcast as a resource.
  • Discussion of the value and challenges of the podcast’s Facebook group: balancing information, activity, and moderation.
  • Lighthearted banter about imposter syndrome, content creation, and the challenge of helping people cope and connect.

  “My greatest accomplishment is keeping the podcast going. That...is not easy to do.” – Scott [81:42]

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Notable Quotes

• On Diabetes Diagnosis:

  “I knew nothing about type 1 diabetes... her life is not going to be normal. Is she going to be able to go away to college? Like... everyone says when they have a kid...you just want a healthy baby... it just made this so much more true.” – E [29:48]

• On Managing Infant Diabetes:

  “I breastfed her ’til 13 months old... with all these injections and all this stuff, like... I didn’t want to make, like, another change in that sense.” – E [40:19]

• On School Accommodations:

  “Her friends have actually taken up to— they have a schedule... fighting over who got to walk her to the nurse...” – E [57:20]
  “I’m her parent and her doctor is willing to write this...funny that some superintendent or whoever...was like, ‘No. Our lawyer says no,’ that’s never met my kid.” – E [69:25]

• On Parenting Philosophy:

  “She does what she needs to do because she doesn’t really know any other way either... water first, eggs first, then fruit... that’s just kind of the way she’s always eaten.” – E [65:16]

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Memorable Moments

• “Let Her Eat Cake” – [35:55]
  The infamous, misguided advice from a diabetes educator to “just give your infant cake” in order to give enough insulin.
• Scott’s Humor Interludes:
  Light jokes on “shrinking testicles” from radiation [19:15], and about “rage boluses” [60:10] provide comic relief.
• Community & Hope:
  E’s gratitude for supportive friends, family, and the T1D community’s power in sharing and advocacy.

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Selected Timestamps for Important Segments

• Intro to E and family history: [05:02]
• Thyroid Cancer Diagnosis & Story: [09:47]
• Diabetes Diagnosis in Infant: [21:02]
• Navigating Hospital/Infant Diabetes Management: [32:53]
• The “Cake” Controversy: [35:55]
• Second DKA & Dealing with Dosing Limitations: [41:05]
• Discovery of Celiac Disease: [45:23]
• Travel/Contamination Experience: [49:16]
• Discussion of School/Legal Rules for Independence: [67:34]
• Hope from Research (Islet Transplant Chat): [61:08]
• Podcast/Community Reflections: [76:35]

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Tone & Language

The episode flows conversationally: honest, direct, at times humorous and self-deprecating, with Scott guiding the discussion with empathy and wit. E is candid about struggles, celebrates small victories, and extends encouragement to others.

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Takeaways

• Parenting a child with both Type 1 Diabetes and celiac disease can be overwhelming, especially when diagnosis happens in infancy.
• Systemic barriers—including dosing limitations, insurance, provider communication, and rigid school policies—remain substantial hurdles for families.
• Humor, hope, community, and persistent advocacy are crucial to managing life with chronic illness.
• Podcasting and peer support provide lifelines to information, connection, and optimism for listeners, parents, and advocates in the diabetes space.

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For more details or related resources mentioned:

• JuiceboxPodcast.com
• Diabetes Pro Tips (Episodes 1000–1025)
• Community Facebook group under the “Featured” tab

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Episode Title Origin:

• “She told me I should give my kid cake... I was just like, 'No. I’m not giving my kid cake for breakfast...'” – E [35:55]

Transcript

[A]

Welcome back, friends, to another episode of the Juice Box Podcast.

[B]

I had papillary thyroid cancer.

[A]

Nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Are you starting to see patterns but you can't quite make sense of them? You're like, oh, if I bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the Diabetes Pro Tip series from the Juice Box Podcast. It begins at episode 1000. You can also find [e-mail] up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top. It'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025.

[B]

Foreign.

[A]

Usmed.com juicebox you can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom Libre, Omnipod, Tandem, and so much more. Usmed.com juicebox or call 888-721-1514. The episode you're about to listen to is sponsored by TandemMobi. The impressively small insulin pump. Tandem Moby features Tandem's newest algorithm, Control IQ Technology. It's designed for greater discretion, more freedom, and improved time and range. Learn more and get started [e-mail] Juicebox the podcast is also sponsored today by touchedbytype1. Please take a moment to learn more about [e-mail] on Facebook and Instagram touchedbytypeone.org check out their many programs, their annual conference awareness campaign, their D box program, Dancing for Diabetes. They have a dance program for local kids, a golf night, and so much more. Touchedbytypeone.org you're looking to help or you want to see people helping people with type 1 you want touchbytype1.org I'm gonna hit record now. Okay. I don't usually do this say testing, testing. Okay, good. So I'm gonna do the intake part on the recording. You're the first time I've ever done this, I think.

[B]

Okay, so.

[A]

So Alien's here. She was nice enough to jump on when my recording for the day had to cancel at the last minute. I went to the Facebook group and there is a. My gosh, there's 88 comments in that. In that post already. And looking for somebody who could literally jump on right now and record a podcast. So thank you very much for doing that.

[B]

You're welcome.

[A]

You're very nervous.

[B]

You said yes.

[A]

Please don't be. Please don't be. Here's what I usually do before we start recording. I say, do you have any questions or concerns or anything that you'd like to ask me before we record?

[B]

No, I just will preface this that, like, my memory for almost nine years ago now is not a lot of the questions you ask sometimes about diagnosis, like Peptide or that kind of stuff. I don't really know the details.

[A]

I don't either. It's not core. You'll be fine. About names, you can use your full name. I'm going to ask you to introduce yourself in a minute. Right. You can use your full name if you want to. I don't think you need to. If you're compelled to. I'm not going to stop you. People in your life, it would be better to say my neighbor or my doctor than to use people's names. A, because they might not want their name used, and B, because it's actually confusing for people. Just, you know, my name makes a lot of sense to people. I can't be your guardrail. So if you start saying crazy shit, you know what I mean? Like, that wasn't me. I'm just gonna ask. I'm just gonna answer, you know, and ask questions. Everyone says, oh, there's nothing crazy about my life. And then inevitably, somebody says something absolutely insane. So. So if. If we're talking about, like, you know, your great grandfather's war crimes one day, like, it. You know, it wasn't me. You. You. You got me there. Okay.

[B]

Okay, sounds good.

[A]

I'm going to ask you to collect yourself and introduce yourself the way you want to be known. And then I'll. I'll ask you a question and we'll keep talking.

[B]

Sounds good.

[A]

All right. And, Rob, you can leave all this in when you're editing. Go ahead.

[B]

Hi, my name is E. I am a mother to a type one diabetic daughter who will be nine very shortly. And we actually just passed her ninth anniversary of diagnosis because she was diagnosed at 10 months old, and she also has celiac disease.

[A]

Oh, my goodness. Is there other autoimmune in your family?

[B]

Nothing that's been clearly diagnosed. Because we have a lot of people that are Too scared to go to doctors.

[A]

So there are people you feel like might have celiac?

[B]

Possibly. We all did get genetic testing after she was diagnosed. Per her doctor. I have one of the genes and they said it could at some point potentially become celiac, but they said unlikely because of my age. Okay, but no one that's been officially diagnosed with celiac in her family, no one that's been type one, One very distant family member at some point mentioned it, but no one else can say like, oh yeah, she definitely did. It was like my great grandmother's like great niece or something. Totally random.

[A]

With the other people in your life that are afraid to go to the doctor, what do you think they'd find if they went?

[B]

I believe my mom probably has like psoriasis, which I believe is autoimmune. And I believe on my husband's side there is a couple of people that have some thyroid stuff. I just don't know exactly if they have diagnoses or what exactly.

[A]

Gotcha. Tired, hair, falling out, overweight, won't go to the doctor.

[B]

Doctor, Yes, I, I do know my brother in law prefers to eat gluten free, but I again, I don't think there was anything like officially.

[A]

No, it's that thing he discovered one day in the bathroom while he was talking to Jesus probably. Gotcha. Well, why won't people take a pill?

[B]

I don't know. I have to take one myself. It's pretty simple.

[A]

Yeah. What do you have?

[B]

I had papillary thyroid cancer.

[A]

Did you? Oh, so you're taking Synthroid?

[B]

Yes.

[A]

Oh, okay. How old were you when that happened?

[B]

It was six months prior to her diagnosis. So right after you gave birth here?

[A]

No, but right after you gave birth though.

[B]

Yes. She was born at the very end of May 2017. I found out in August 2017 that I had cancer.

[A]

Oh my gosh. Was she your first?

[B]

She is my third daughter and I have four. Yes.

[A]

How old were you when you had her again?

[B]

I'm going to have to do math.

[A]

It's nine years ago. It's easy. Take 10 off and then add one back.

[B]

Oh, okay. Yeah, that makes it easier. So then 42 minus 10.

[A]

32.

[B]

32. And then add one back to 33.

[A]

33. Yeah, yeah, see, it's easy. Math is not tough. How old are your children, sprout? She's nine now. But how old are your other two?

[B]

I have a 13 year old daughter. I have an 11 year old daughter. She is my nine year old. And then she also has a six year old brother.

[A]

Okay, wait, wait, wait. Hold on. How many kids do you have?

[B]

Four total.

[A]

Four. I didn't know about the boy, I guess. Okay. And the rest of them not having any issues currently?

[B]

No. My oldest, we have actually taken her to my daughter's endocrine for a follow up because she has some symptoms of some stuff and I was not happy with her thyroid levels when the pediatrician ran it for me. And I was like, with our family history, I really don't feel comfortable with this number. I think it was like a 3.7.

[A]

Oh, no. Yeah, that might need met. Does she have symptoms? Yes, she needs meds then.

[B]

Well, they would not. They would not agree with me there. So I took her to the endocrine for follow up and I think they had like, went down a little bit. So she said, right now we're not going to medicate, but it's almost been a year, so we might follow up again.

[A]

I would tell that Dr. 2.1 or over with symptoms. I want to do something not up.

[B]

I said I would feel pretty bad if that was my numbers.

[A]

Yeah, yeah. Well, yeah, keep pushing if you can. I know it's exhausting to fight with them, but, you know, the simplest thing to do would. You could just call around to other offices, give them a two sentence explainer about what's happening and say, is there a doctor in the practice that would be comfortable being a little more forward thinking for my daughter? And then just wait till one of them will say yes. And then you might have to hang up on a few people, but one of them will say yes. And I think you run her in and they'll give her the meds.

[B]

Yeah, she's. She seems like more tired than her peers. She definitely has, like when she brushes her hair, I see her hairbrush and I'm just like, that's not normal. Gaining weight a little bit. Yeah. But she's also of that age where you're supposed to gain like kind of a lot of weight. That, like prepubescent kind of.

[A]

Yeah, no, I get what you're saying, but that even the tiredness in the hair and everything, it's just, you know, it's coming. If it's not full force on her already. Imagine if she had more. Imagine if this person who canceled on me at the last minute whose name I won't mention, but damn you, lady. And then I was all ready. I was excited to talk, but now I got alien. It's much better. But imagine if she just had more energy, how great that would be for her.

[B]

I agree. I try. I've listened to your thyroid episodes. I'm like, well, I'm also in New Jersey like you. So I'm like, can I get into Scott's doctor, Can I tell you what that you've mentioned?

[A]

She's out and she let's talk about the Tandem Moby insulin pump from today's sponsor, Tandem Diabetes Care. Their newest algorithm, Control IQ Technology, and the new Tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. TandemMobi gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever and they'd like you to check it [e-mail] juicebox when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about Tandem's tiny pump that's big on control. Tandem diabetes.com juicebox the Tandem Mobi system is available for people ages 2 and up who want an automated delivery system to help them sleep better, wake up in range and address high blood sugars with auto bolus. You've probably heard me talk about usmed and how simple it is to reorder with usmed using their email system, but we did. You know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you. But I'm set up to be called if I don't respond to the email because I don't trust myself 100%. So one time I didn't respond to the email and the phone rings at the house, it's like, ring. You know how it works? And I picked it up, I was like, hello. And it was just the recording. I was like, you asked Mad doesn't actually sound like that, but you know what I'm saying? It said, hey, you're. I don't remember exactly what it says, but it's basically like, hey, your order's ready. You want us to send it? Push this button if you want us to send it. Or if you'd like to wait. I think it lets you put it off like a couple of weeks or push this button for that. That's pretty much it. I push the button to send it and a few days later, box right at my door. That's it. Usmed.com juicebox or call 888-721-1514. Get your free benefits checked now and get started with usmed Dexcom Omnipod Tandem Freestyle. They've got all your favorites, even that new eyelet pump. Check them out [e-mail] juicebox or by calling 888-721-1514. There are links in the show notes of your podcast player and links@juicebox podcast.com to us Med and all of the sponsors. She broke our heart. She didn't. She actually been a lovely part of our lives but her husband got this really kind of fancy job with the, the French government and they are moving and she is, she's out. She's not going to practice anymore.

[B]

There goes my stalker luck of trying to get into a good doctor.

[A]

Yeah, well actually Arden and I are, are going to throw a dart at a board today and pick an endo for. So we'll see what happens with that. But, but yeah, no, she, she just got an opportunity and she's like I'm going to retire. And she's off and we just had all of our blood work run for the kids and everybody. So I was texting with her the other day and she's like, you just caught me. Ten more days and I'm done. And then she's like, follow up with me on this one thing. I tried to text her last night and her phone didn't work and I was like, oh. So I just, I switched, I switched over to email. It's like she is really getting out of here. Oh my gosh. Well, I, I wish you luck with that.

[B]

So thank you.

[A]

Yeah, yeah. So tell me a little bit, was your pregnancy fairly common for you? I mean you had had a number of them already. So how did it go right before the diagnosis, your diagnosis? I mean.

[B]

Yeah, the pregnancy was great. I believe it was. While I was very early on in the pregnancy, I had switched primary doctors and I kind of did have some complaints of thyroid esque type symptoms saying like I was tired and hair loss and that sort of stuff. But again, I was newly pregnant so they kind of were like you're borderline. We could put you on a low dose Synthroid kind of thing. So I said yes and we increased it. You know, with weight gain you kind of have to change your dosing sometimes. So we increased that as needed and I was feeling pretty good and they said to come in. I believe it was three months post postpartum was when they would check again, because then you have the weight loss, so you would need a change in dose again. And so I went in, and I believe it was the nurse practitioner even asked like, have you had an ultrasound since being on this medication? Since it's been just about a year, a little over a year. And I said, no. She said, well, that's kind of common practice. And I was like, oh, okay. So she gave me a script upon leaving for an ultrasound, and I went for that pretty quickly. And I remember while I was lying there when they were doing the ultrasound, because I've now had three pregnancies and ultrasounds many, many a times, I said, they're taking an awful lot of pictures. This is. Something's wrong. And I went home and I started googling. And I was like, I have thyroid cancer. That's it. And look at you. So I was lucky enough that one of my sorority sisters. Well, not lucky that she had it, but lucky enough that I had someone to reach out to because I had recalled a sorority sister that had thyroid cancer after delivering her child. And I reached out to her even before I officially had gotten the diagnosis and was like, I need all your information. I'm about to drive myself insane googling and being scared. So I was lucky to have a resource in a sorority sister. And the ultrasound did come back again. Another fortunate thing, I believe that they normally wouldn't biopsy until the nodules are more than 1cm, and mine was like 0.99. And they were like, that's close enough. And you have a couple others. Let's send you for a biopsy. So I went for a biopsy, and even that endocrinologist that was doing the biopsy told me that the pattern of my nodules were not consistent with cancer. But sure, she'll still biopsy. So now I had an ultrasound that seemed kind of not. Wasn't going to be like. It was kind of offhandedly like, hey, you should do this.

[A]

Yeah.

[B]

Then. Then even after the ultrasound results, they were like, ah, it's close enough. Let's do this. Now I have an endocrinologist telling me not. Not the pattern of thyroid cancer, but we're still going to biopsy it. And it wound up being, yes, cancerous. They did not biopsy one of the other nodules because your thyroid looks like a butterfly.

[A]

Yeah.

[B]

They biopsied the nodules on the right half, but not the left half because that was the biggest one. And they were able to get two of them at the same time. And they said that when they do the surgery to remove the thyroid, they will then test the pathology of the other nodules. And it wound up being that all of them were cancerous. So they removed the entire thyroid at that point.

[A]

No kidding. And you dragging four kids around with you, these doctor's appointments?

[B]

Three, but yes.

[A]

Did it make you take the baby? That was nice.

[B]

No. So a lot of times I did take them with me to the biopsy. They actually didn't tell me that I should have had someone to be able to drive me home because you wouldn't be able to turn your neck. And I was like. And I was like, no, no, no. I said, I got a babysitter. You are doing this now. I said, I will figure out how to get home. I will not make turns. I will drive straight.

[A]

I have a babysitter. I'll sit out in the hall if you need me to for a day or so, but I'm not going home and coming back here. You don't understand.

[B]

Yes. I was like, it is too difficult.

[A]

Were you having any postpartum symptoms at the same time?

[B]

Nothing crazy? No, I was. I was. Okay. That just made me a nervous wreck thinking about. Because the other thing about papillary thyroid cancer is that they cannot tell, at least my understanding, the way it was explained to me, unless things changed or I was told wrong. They cannot tell if it had spread to your lymph nodes through any sort of testing. That's something that you find out in surgery.

[A]

Oh, Jesus.

[B]

Right. So I didn't know if I was going to be able to continue nursing my daughter or if you'd wake up with more.

[A]

More cancer than you knew about.

[B]

Right. And if I woke up, if I would need radiation, which would also mean isolation from my family. So we kind of needed to have a plan in place for where they would be living or I would be living. If I needed to get the radiation, I wouldn't have been able to change the baby's diapers like I would. You're not supposed to even share, like, a toilet with other people when you're going through that. So there was a lot of thinking and planning for scenarios that you didn't even know if you were going to need.

[A]

Right. I wonder why you can't share a toilet.

[B]

I'm not sure. I just know that, like, you, like, you need to be, like, completely kind of isolated.

[A]

Radiation?

[B]

Yeah.

[A]

You think it would shrink testicles?

[B]

I don't know.

[A]

That would be a great service for older men.

[B]

I mean, I could be recalling Slightly wrong. I just know, like, you're supposed to, like, really be, like, away from other people.

[A]

No, no. I've heard that before too. I. I am interested. I'm not. I'm not interested enough to sit up and check, but I am interested.

[B]

You're not putting that into your chat. GPT.

[A]

No, I was like, it's interesting. I'll think about it later, but I'm not going to find out now. I'm happy enough with the saggy balls joke and I can move on, so. Well. Wow, that's so much. It just, it really does feel like a lot. But that's nine years ago now.

[B]

Yes. And that was. So I had this. We found out in August, and I had the surgery that October of 2017. And then my daughter was diagnosed April 2nd of 2018. So less than six months after my surgery.

[A]

Oh, just when you were relaxed and thinking, hey, I'm not going to die. Everything's going to be okay.

[B]

Right, Exactly. I, you know, I stopped writing the will. What.

[A]

What was, what was everybody getting? Was it. Was it depressing? I think my will would be depressing. I'd start writing back, I have nothing to give people.

[B]

Yeah, no, it was more like worrying about who would take care of my kids.

[A]

Yeah, well, listen here.

[B]

I had a lot of them.

[A]

I. When we sat down and did that, I. I definitely shouldn't say this, but you start going through people in your family, you're like, no, no. Then you get the one, you're like, I mean, I guess this is acceptable.

[B]

I know.

[A]

And I'm sure they're thinking that about me while they're doing the same thing they're probably going through and like, oh, no, no, no, no. Oh my gosh.

[B]

Wow.

[A]

Okay. So how did the diagnosis come up for your daughter? What was the first? I mean, she's only a few months old. What's the indications?

[B]

Yes. So her oldest sister was just in pre K4. It was her first experience at school. And then the middle daughter was still at home with us. And so when Ainsley was. Oh, and sorry. My husband also worked nights, night shift at the time. So I was doing a lot of just kind of like co sleeping, nursing overnight, like minimal getting up out of bed for myself. So I didn't really notice a lot of the symptoms until like hindsight when you talk about it, because, you know, she wasn't getting a bottle where I could see how many ounces she was taking in. I wasn't really counting how many times we woke up because I kind of was Just, like, exhausted. Like I said, I wasn't getting in and out of bed, but so her oldest sister was in school. And I don't recall her coming home, being sick, but when Ainsley got sick sick and was vomiting one night, I kind of was like, oh, great. We just brought home a bug from school type of thing. And our pediatrician at the time, in the past had let my older daughters use. It's called Floristor. It's a probiotic, and it's a flavorless packet, and you can mix it into applesauce. And it's supposed to be good when you have a stomach upset. And so I remember I called the pediatrician asking, because on the box it says, under one, do not give. And I was just like, should I? She's under one. Can I not give this to her? And the pediatrician said, no. And I was like, okay, cool. And they said, do you want to come in? And silly me said, no. I was just like, no, no, it's okay. It's just a stomach bug. I don't need to come in. I just really want to know about if we could use the floristor. And so I. I didn't go. I didn't even take my. My sick kid to the doctor on the day of her diagnosis.

[A]

Well, that happens to everybody. You know that You've been listening for a while, right?

[B]

Yes.

[A]

Yeah.

[B]

Yeah. So we kind of dealt with it at home for a little bit. And I just remember I was, like, pacing. I did a lot of baby wearing since she was the third, and I was pacing because she was just being so unsettled. Like she was just tossing and turning in her sleep and just restlessness. Like, she wasn't necessarily crying. And so it was just a couple of nights of that. Then. Then the vomiting came. And I remember that it was a Friday night, and I was pacing again, waiting for my husband to kind of come home. And then she threw up everywhere, like, all over our bed. And I was like, great, now he's gonna come home from a shift, and I need to make this whole bed so he can get to sleep. And at the time, my parents lived about 45 minutes away. So that morning, I remember I called my mom, and I was just like, I was up all night. I have so much laundry. She has, like, no clothes left. We have no sheets left. I'm like, it's the birthday party today. That's what I posted about you. I guess I should also add that into my long winded story. All of my children have similar timeframe birthdays. So we were doing a huge family birthday party at my in laws house.

[A]

And that was that day.

[B]

That was that day, that Saturday. So I was like, mom, I need you to come out here. At the very least that way I can go and like watch the girls blow out their birthday cake and you stay with Ainsley since she's so sick. I was like, but I definitely need help.

[A]

By the way. I'm dying for that day when my kids admit finally that I'm reasonably helpful to them. Your mom must have been thrilled. Not about the baby being sick and missing the party. She was probably just like, I knew it. I knew they'd need me again. Again.

[B]

Well, my parents were still, both still working at the time. They weren't retired. So I was lucky that it was a Saturday.

[A]

Oh, oh, I see. I see. So she, you call her the day before, she'd be like, I'm at work, I can't help you. Yeah, yeah. Okay. So at this point when you're calling your mom, it's really more functional though, about the day, right? About the laundry and the preparation and not missing things. You're still not thinking something's really wrong with the baby.

[B]

Not, not at the exact moment. I called her because I called her kind of like a 9am ish type thing because I was trying to let my husband sleep before he had to be up and right. You know, of course I had three kids at this point under five, so like they all were up. So 9am felt pretty late in the day.

[A]

I know how you feel.

[B]

So yeah, so she started to head out. Like I said, it took between 45 minutes to an hour. And at that point though, she threw up a whole bunch more. And I remember, I was like, it's a Saturday. They close at like one, like whatever their shorter office hours were. So I called back the pediatrician now and I was like, this is no longer normal. And they said, they said, you know what, honestly, if she's been throwing up that much, we don't think you should come here anymore. Even if it is a stomach bug, you're going to need IV fluids. Just go straight to the hospital at this point, okay? So I waited for my mom to get there and sent my husband and my other two daughters to the birthday party. And I was like, don't worry, she's coming. It's just fluids. It's just a stomach bug. We'll be in and out, like, we'll be there for cake type thing.

[A]

I love your Jersey approach to everything. You're like, it's gonna be fine. We'll just keep doing it. Everything's terrible, but I won't stop.

[B]

Oh, well, actually, we were in New York at the time, and our house was sold. We didn't have a new house, so that just adds a layer.

[A]

Oh, my God.

[B]

By the way.

[A]

Jeez.

[B]

Yeah. So we had, like, half our house packed up into pods.

[A]

Oh, my God. Yeah. Terrible.

[B]

It was like, everything at once.

[A]

Yeah. Yeah. No kidding.

[B]

Yeah. So. And I remember driving to the hospital is where I gave birth to all three girls. And my mom was there, and she fell asleep in the car seat. And I was like, maybe we don't have to go. She's sleeping. She's probably better. And then I was like, no, it's okay. I'm gonna. We're gonna still go, you know? Yeah. But at least she's no longer crying. She's no longer vomiting, like, whatever. And we get to the emergency room, and it was packed. And because she wasn't crying, there was nothing in her airway. I told them what I thought it was, and, you know, they kind of were just like, okay, sit and wait. So I. I don't remember how long we waited, but it was a couple of hours. And then when we finally got taken back, that's when it felt like a TV show.

[A]

Right.

[B]

When they must have done ran her blood sugar and couldn't believe it and neither could I. Yeah.

[A]

I realized they had a baby in, like, serious dk. Just sitting out in chairs for hours.

[B]

Yes. Yep. Gosh. There was, like, pages over the loud system. I remember them being like, step back and just people flooding the area, them throwing, you know, questions at me, like, is there anyone in your family that's a diabetic? Do you know what type one is? I was like, what?

[A]

What? Like, trying to figure out if you had context or. Oh, my gosh.

[B]

Yeah. And the on call endocrinologist, again, because it was a Saturday, was apparently at her child's soccer game. So they kind of were like, this is what we think it is. We think it's diabetes. But Dr. So and so is. She's. She's coming in as soon as possible. She's on her way, and.

[A]

But her son's the goalie, so we're gonna have to wait a little bit. He's so proud. Wow. My gosh. Did she. I mean, I don't want to. I mean, it's been nine years, so I imagine you can handle it, but did she almost die?

[B]

I remember them, like, again, I was nursing. She was Exclusively breastfed at this point still. And I was just like, she hasn't eaten in hours. And I was like. I was like, does she need to eat? Is she okay? And they were just like, we need to save her life first. They were like, do not worry about that. And I was like, well, I thought eating needed to be done for living, too. But, like, they were just like, kind of like, yeah, we need to save her life before anything. And I think she was hooked up to the. All the different stuff. It was over 48 hours before they let me hold her, touch her, do anything. And they didn't teach me. Teach me anything about diabetes. I didn't do anything. They were just kind of like, she needs to be off all of this equipment first before you can even know anything about diabetes. Yeah.

[A]

Yeah. Wow. They did that. Those people did a great job saving her. It sounds, like, really cool.

[B]

Yes. We were very, very lucky, I guess, that the pediatrician at that point didn't even delay us. Like, I didn't go to a pediatrician to then be sent to the hospital.

[A]

Yeah. To add extra time into the steps and everything. Wow. My gosh. Whoa. Geez, That's a lot. Did you. Was there psychological, like, impact from that afterwards? Did you find yourself, like, nervous or anxious? Or is there trauma you took from it?

[B]

I knew nothing about type 1 diabetes, so I will say, especially with how young she was, and now I know I was totally wrong, but at the time, you're just like, oh, my gosh, her life is not going to be normal. She won't be like, how can you go to school? How can we go on vacations? Like, is she going to be able to go away to college? Like, just like, when you think, like, everyone says when they have a kid, they're like, do you want a boy or girl? And everyone always says, you just want a healthy baby. Like, that's like. That just, like, made this so much more true. Like, especially even having a kid after her is just like, I don't care. Just want a healthy baby. Because, like, it's just so scary to think about the alternatives. And so I just kind of sat in that for, like, two days. Like, I. I think I left the bedside once to quickly shower and say hi to my other kids.

[A]

Yeah, the birthday party.

[B]

It looked cute. I saw pictures. The family did a great job making them feel loved and special.

[A]

Nice. I bet you the party the next year was huge, huh?

[B]

We all don't live near each other anymore, and we got to. This was the first time there's nine grandchildren spread out across the US and we met up in the Poconos and it was the first time they were all together and there's, there's a lot of them that are born in that day.

[A]

Hold on. That day was a meetup from around the country?

[B]

No, no, that was more recently. Yeah.

[A]

Okay. All right. I was like, I don't see how that started getting worse. Okay. But so since, since then, like you guys have all kind of like spread out a little bit. Yeah.

[B]

So we, we have like kind of. We try and get together once a, once a year if we can, but our family from Texas was able to join us this year. So. Yeah, because I have my daughter is the very end of March. Then I have My son is April 2nd and my other daughter is April 15th. My husband is April 14th. My niece is like the 22nd. My nephew's the 6th. My father in law is the 6th. I have a sister in law that's the 7th. My. So we literally celebrated like 10 birthdays at once. This year.

[A]

I'm going to move on. I want to ask you about raising a baby with type one, but first I'm so confused and it's meaningless to the story, but I want to understand is this is your son from another marriage for your husband or like you talk, you, you don't. When you lump them all together, he's not there. Usually I'm trying to figure out what that's about.

[B]

Oh, he, no, he's the same family. It's just like, I guess because he came after the diagnosis.

[A]

Oh, okay. I see, I see. That's why he's not in the stories. Okay, all right. Sorry. I kept thinking like, does she like that kid?

[B]

Because no, he's. He is a funny. You, you would find him funny.

[A]

Awesome. Okay, cool. So I mean, nine years ago, what's it like raising a 10 month old with type 1 diabetes? Like what. When you finally get some knowledge, what does it look like? And, and how did it actually work out in reality?

[B]

It was so confusing. So again, I know I said I'm in New Jersey, but at the time we were in New York for about a month, a month and a half maybe post diagnosis. So we had, when you get diagnosed in the hospital, at least there, I think it's the same everywhere. Usually whichever on call endocrinologist is there, that's like kind of who your doctor is unless you choose to switch. So we had this lovely. I don't even remember her name. Female doctor. She seemed great. However, it was a teaching Hospital. And whenever I called the on call, I got a lot of young male residents that knew nothing about nursing. So it was very, very hard to call and be like, I just breastfed. What do I do? Her numbers are this. And they'd be like, well, how much milk? And I'm like, I don't know. I breastfed. And they're like, what do you mean you don't know?

[A]

And like, it's not clear. I can't see through it. Yeah, yeah, yeah.

[B]

And they just. I felt like they were constantly trying to tell me not to nurse her. And I was like, well, when you're hungry, do you eat? Like, oh.

[A]

Because they didn't have an answer. So they're like, you know what the problem is? It's that milk you're giving her.

[B]

Yes. They were trying to very much encourage me to stop nursing. I felt there was a big push, not necessarily from the doctor, but from when I was making these phone calls from people that really didn't have good answers, I guess.

[A]

Wow, that sucks. My gosh.

[B]

And then we also had a horrible. I guess it was the diabetes educator. She was a bad experience, too. I'm glad I only had the one appointment with her. Again, this doctor seemed amazing, but I guess just the way this particular hospital system worked. I didn't get much facetime with her in the month and a half. I saw other people, the person that

[A]

knew what they were doing didn't talk to you.

[B]

Right.

[A]

What was the. Not many people called, like, the medical staff. Horrible. Like, what happened with that one person that you were happy only to have seen once?

[B]

So I will again preface this with that. My child was 10 months old, exclusively breastfed, and we had started baby led weaning, which is basically just like you give your child softer foods, but whole foods, like bananas, or if you soften up apple in the microwave, you can mash up, like, sweet potato, avocado. Just regular food. We didn't do baby food or the baby cereal. And you just let them kind of explore it and eat it however much they want. Like, you just kind of put it on their plate, and if they eat it, they eat it. If they don't, they don't. So she was getting almost all of her nutrition from breast milk still. And we met with this CDE that told me because I. We were having issues where I couldn't give her insulin. Her carb ratio, I believe, was one to 60.

[A]

Okay.

[B]

So for even a half a unit, that's obviously 30 carbs. My kid was not eating even close to 30 carbs. So she told me I should give my kid cake to try and get. To give her enough insulin. And I was just like, she said

[A]

breastfeed her and then give her cake to get her up to 30 carbs.

[B]

Yeah, she recommended. She's like, I don't know, why don't you just go get like some entamins cake or something? And I was just like, no.

[A]

She actually said intamins.

[B]

Yes.

[A]

Is that, is that local to us? Is that a thing not everybody would know about?

[B]

I, I don't know. But I was just like, you clearly like, no, I'm not giving my kid cake for breakfast just to give her a half a unit of insulin.

[A]

She said, lady, I'm a person who just said self led eating. And you think I'm gonna give my kid a prepackaged cupcake? Is that what you thought was gonna.

[B]

I mean, at least, at least it was a soft food. I don't know.

[A]

Was she young?

[B]

She was, but she had type one herself. But I mean, and I don't judge anyone that wants to eat that. I just, I was still learning everything myself, right? And I was just like, I'm trying to feed my kid healthy. Like, no, you know, it's probably what

[A]

she uses for her lows. Maybe that's why she said it. You know what I mean? Do you think she's. Can you imagine if she's listening right now? She's like, oh, that was me.

[B]

I mean, I sure hope she didn't give anybody else that advice again. I mean, maybe if it was like, oh, I couldn't reach 30 carbs with dinner. And it was like, okay, you're giving broccoli and then maybe give like a little bit of cake to help bump it in there. Like, she was just like, yeah, like just, I don't know, give a slice of cake.

[A]

The good news here is is that your episode is going to be called Let them eat Cake.

[B]

Oh, I like that. That's awesome.

[A]

My gosh. Okay. All right. So your biggest problem is that the, the breastfeeding's not getting up to the level that will even be supported by a half unit of insulin. So, I mean, I was in a situation with Arden. Arden was diagnosed when she was 2 years old, but she weighed like 17 pounds on diagnosis day 19 when we left the hospital and I had to teach myself how to inject like drops of insulin. Insulin. So did you end up doing that or what did you.

[B]

We did try eyeballing to try and get what we were guesstimating. Like. Well, what I was guesstimating to be even half of the.

[A]

Yeah.

[B]

Half a unit. By. But I mean, anyone that can take a syringe, that's listening and look at that. That's very, very minuscule and hard to do.

[A]

Yeah, but that is a. Is a. It's a leap. You're doing your. I. I don't know if you ever heard me talk about it, but I. I once put insulin into a dish, and then I put food coloring into it so that I could see it. Then I drew it up, and then I would just practice pushing on the plunger till a drop came out, like, so I could do it by eye or without my eyes. Excuse me. And so I'd watch. I'd feel the pressure, feel the pressure, feel the pressure. I'd be like, that's a drop right there. And then, of course, I didn't use the insulin with the food coloring in it. That was just for practice. And then I would. I would draw a little bit out of the syringe and then put the needle in and then just try to mimic that, like, one drop coming out thing. That was not fun.

[B]

That would have been better advice than cake.

[A]

Well, thank you. Can you just give her cake? Well, no, but I guess for every

[B]

meal, just so she can get insulin.

[A]

Yeah, every. Oh, that's a good point. Right. Every time she breastfeeds, then she gets cake.

[B]

Yeah.

[A]

Yeah. Not a well thought out plan. No.

[B]

And so we were. She was definitely having, like, ketones as well. She actually went into DK a second time not long after diagnosis, basically because of not being able to give enough insulin.

[A]

Yeah.

[B]

My gosh.

[A]

How long did this all go on for? How long did she breastfeed? And was this a struggle?

[B]

I breastfed her until 13 months old, so for about another three months after diagnosis. That's when I did also all four of my kids, so that was kind of my goal. And. But she did start eating a little bit more after that, too, like,

[A]

with the choosing from, like, avocado and apple. And you kept giving it. Did you keep giving it to her, hoping, like, oh, my gosh, maybe she'll eat this and we can stop with the breastfeeding or. You really wanted to get to that. 13 months.

[B]

I felt like, because breastfeeding is more than just, like, nourishment, it's also, like, a comfort thing, too. And I felt like with all these injections and all this stuff, like, I didn't want to make, like, another change in that sense. Like, I kind of Felt like that's like a bonding thing. That is also a comfort thing. I really didn't want to just be like, oh, because I can't dose for it. We're going to drop this.

[A]

Yeah.

[B]

So I did want it to be more because it felt like that's just where our time had come to.

[A]

Are you working at that point or no. Are you a stay at home mom or how.

[B]

I was a stay at home mom. Yeah.

[A]

I was going to say, I don't know how you would keep a job during all that noise. So then as she gets bigger, I guess the insulin gets easier. But nine years ago, she have a CGM or are you just a meter?

[B]

We did get a cgm. Not at the hospital. Like I hear some people are fortunate to get. We got it right before moving. So I think it was actually the week of her first birthday. So about two months after diagnosis.

[A]

Okay. And obviously helpful.

[B]

Yes. Oh, my gosh. Yes.

[A]

Does it. Did it make you immediately? I. I know when Arden put one on, as soon as I could see it, I thought, oh, how. What was happening before, like, it almost made you feel like, don't think about that. Like, don't think about what might have been happening before.

[B]

I think I was finger pricking so much because I was so neurotic.

[A]

Yeah.

[B]

That I. And I don't think her numbers were ever really low, I have to be

[A]

honest, because she just didn't have enough insulin to make that happen.

[B]

Yeah.

[A]

Yeah.

[B]

I don't even remember what her basil was. I do remember that we did leave the hospital with the two types of insulin, so I know she was on basil. I can't imagine it was much, though.

[A]

I remember a time when Arden's basal was one unit a day.

[B]

It probably was something like that. I would.

[A]

That. That. That's freaking me out a little bit now. It's one unit an hour.

[B]

Oh my gosh. She still has pretty low basil needs.

[A]

Nice. Do you think she has any, like, function left? You. Do you ever see like, did you see honeymoon or anything during that time or would that even be a thing you'd know to look for?

[B]

I mean, I feel like I've from like being in your Facebook groups and listening to your podcast, I feel like I've seen people say they've had to completely go off insulin or they, you know, just needed long acting or just needed short acting based off of different scenarios. She's. She's always. She's been insulin dependent since that day. We've never had to back off anything.

[A]

Yeah.

[B]

So I don't, I don't recall really a honeymoon phase.

[A]

What was. I'm going to speed up a little bit because I'm interested in. Because you've seen it through all the different like iterations, right. And age groups. So were there times that felt harder, times that felt easier? Did you have to use daycare? Did you have to like, what was it like sending her off to kindergarten? Can you walk me through the, you know, the timeline of her life?

[B]

Yeah. So I actually we moved right after, not long after and she was one. So I decided to continue to stay at home because of the move and her diagnosis. I was, I worked for New York City Board of Education as a school psychologist prior to my children and still had all my certifications and everything. And when we moved between state lines, I never even like looked into how I needed to change over all my stuff. Okay. So I just have continued to stay at home because we couldn't really see a life otherwise either. When she was about to, when she would have been old enough to go to pre K3, I did discuss it with her endocrine. I said, do you think it would be more beneficial for her to start to get used to someone else caring for her other than me or do you care if I keep her home? Because I really want to keep her home another year. But I really love our new doctor here in New Jersey so I very much trust her opinion. And she said that she felt, you know, just doing pre K4 and then kindergarten would be fine. We didn't need to push it for three. And also at this point she had just been diagnosed with celiac at three. So I was also even a little more nervous to send her to school with now two things a nurse would kind of have to deal with. So she did not go at three. At four it was pretty nerve wracking. It was September 2020 so they were going to school in masks. But luckily the primary school is very close to my house. Like if for any reason my car broke down, I could literally run there. And it was only 2 hours and 20 minutes a day and there is a nurse in the building. So it was a best case scenario for a very nervous mom like me.

[A]

Yeah. Hey, what are the lead up symptoms to the celiac diagnosis? What did you notice? First

[B]

we were having severe difficulty potty training and not for lack of her wanting to because she actually could not go. She was so constipated and could not. It took her hours. So you can't force a three year old to sit on A toilet for hours.

[A]

Yeah. Nor would you want to.

[B]

Right. So she just, she could not potty train because she just. It was a struggle. So that was one of the first symptoms I noticed. And it eventually got to. I started backing off insulin. At first I thought it was just a carb ratio change. And so we made her carb ratio weaker. And I kept like, I think I changed the insulin to carb sensitivity. We changed basal rates because at the time she was on dash, there wasn't automated back then. So I just kept changing things. At one point, I remember it was summer, it was July. We were at the beach and I just had to keep feeding her watermelon all day and her pump had been like suspended. And I called the doctor the next day. I'm like, as much as I would love to say my kid is no longer type one, this is kind of weird. She doesn't need insulin anymore. And we had been watching. They told me they felt that it was not if but when she becomes celiac because she did test positive for all the markers and everything at diagnosis. So I was kind of like, I think we need to come in. But it had been all that Covid stuff and they kind of were pushing me off. And then finally when that happened, when we were like no longer giving insulin for much and having these other issues, they said, come into the hospital and we'll do some blood work and all that.

[A]

So how have you learned to manage celiac? Is it how you cook or is it what you buy? Some people buy a lot of prepackaged stuff that's, you know, that's supportive. And some people will do their own cooking. What have you ended up doing?

[B]

We mostly cook at home. She. She's a very great eater. Out of all four of my kids, she's the healthiest and easiest. So she does a lot of like, just like kind of natural whole foods. But she's still a kid and she goes to school. I mean, she eats a sandwich every day just on gluten free bread. Sometimes she likes lunchables and I make them with the gluten free, like Ritz looking crackers. And now there's so many cool products out there that makes her like. Her friends were so excited when gluten free cheez its came out because now she can have Cheez its like them. And her friends are really, really awesome and supportive because they've only known her to have both type one and celiac. So whenever they have a party or she has a party or just to get together, like everyone Always brings like the gluten free Oreos now that they' so easy to find, or the gluten free Chips Ahoy. So everyone's really great and it's really easy. When we're at home, we actually. She actually got cross contaminated. We were just on vacation and she got pretty sick while away, so that was unfortunate. But at home we really manage pretty easily. It just takes the spontaneity out of your life because if you don't have food on you, you kind of can't just go anywhere. Right? Right.

[A]

What, what is. What is getting sick?

[B]

Look like she was vomiting all night.

[A]

Oh gosh. And, and yeah, just it's a thing you tell people and they just. It get is like cross contaminated. Like somebody's not paying attention or they bring you something they shouldn't have. Do you have any idea even what happened?

[B]

We do. So we were in Paris and we had these translation cards and you kind of at that point have to know you're taking a risk and hope for the best. I had done some research. There's like celiac travel, Facebook groups and stuff and we had the names of some places, but we were with a big group of family and they all didn't want to eat at 100 gluten free restaurants every single time. And I had went to this one place that was near the Airbnb the night before and brought the card and asked them and I was like, hey, like if we come in here tomorrow? And they were like, yeah, yeah. We were going for crepes and buckwheat. Crepes are made with buckwheat, which even though it has the word wheat, is actually gluten free. And so I talked to the guy and I was like, okay, great. Thought I had done like my due diligence and we went the next night. But I guess even though the card had said like it needs to be used separate utensils and separate cooking materials, that's the only thing we can presume is that they must have used shared cooking preparation space or you know, touched or something because hers definitely did look different. You could tell we were there for six days. We had bunch of crepes in other places where she didn't get sick. The buckwheat crepes has like a darker flower, so you could tell the difference by looking at it. So we know she did have a gluten free one. So I think it was just contaminated. Yeah.

[A]

Yeah. My gosh, that sucks. I'm sorry. It really just. It is a lot like you Have a really good attitude. Like, is it. Are you high? What's going on? Are you on pills? Why are you so happy?

[B]

I. I think there's days where you can get beat down. I guess I'm. I'm on a day where I'm not beat down because she is definitely thriving as a whole.

[A]

Yeah. And so she's got supportive friends. You figured out her eating. You figured out the diabetes is the next piece. So how long was she on mdi? When did she start? I mean, I assume she uses a pump now.

[B]

She does. We are on Omnipod 5 now, which is technically our third pump if you count dash as a separate pump. She used a medtronic at first. When we moved to New Jersey, that was the second time she went into dk was during our move. I could smell the ketones on her breath. We were in between the houses, like we had closed in New York, moved. We were staying in my sister in law's house overnight because we were going to close on the house the next day. And I could smell her breath. And we had the Dexcom at that point, so I could see her numbers. And I called the on call New York doctor and I was like, these are her ketones. And you know, I'm so scared. Like, she's. Her breath smells just like when we brought her into the hospital. And they were basically like, you're over state lines, insurance, we can't help you. Like, if you're nervous, you have to go to a hospital.

[A]

You're overstate lines.

[B]

Yeah, I guess because they couldn't bill it and they couldn't give medical advice over phone. And because they couldn't see us and they were just kind of like, you have to go to somewhere in New Jersey.

[A]

Okay. And then what'd you do?

[B]

Well, I was just like, okay, I'm just gonna push more insulin overnight. We went and closed on the house and then I went straight to the hospital from there.

[A]

What is wrong with everybody?

[B]

And she was in dk, so.

[A]

Oh, my gosh.

[B]

But it was the most. Not that I'm glad she went into dk, but it was kind of like one of those blessings in disguise because we couldn't get an appointment, you know, obviously immediately. Usually there's a wait list and stuff for doctors. This was Memorial Day weekend of May, obviously. I think we had an appointment for like the end of June, and the doctor we had an appointment with wound up being the on call endocrinologist. So we got to see her right away upon moving and she is like I said, fabulous. And I very much value her opinion. And so once we saw her in the hospital, I explained what was going on. Why basically I felt we were in DK again, and that's because I couldn't give insulin. And. Oh, and also the New York would not give us diluted insulin because that was something I had read about on Facebook groups and stuff. And they just would not support diluted insulin. The New York practice.

[A]

They wouldn't or they didn't know how to. Do you ever get a feeling for what that was about?

[B]

No, I don't remember why. I just know that was not. We were not given that option despite me definitely knowing about it.

[A]

Yeah. And you pressed a little bit and they're like, we don't do that.

[B]

Yeah. And then so she was like, okay, no, no, this is all wrong. She's like, we are getting you on a pump right away, but for now. And the hospital had a pharmacy, like the hospital pharmacy, and that was it. She got us on diluted insulin that second in the hospital and wrote up all new carb ratios and taught me how to change everything based off of using the diluted insulin. That way, essentially you could then drop what looked like a unit, but it really wasn't a unit because.

[A]

No, no, I know. Yeah, I know what it is. And I just. I actually just interviewed somebody who used it really successfully, you know, but their child was younger. It's weird for them. Not that it was a pediatric endocrine office.

[B]

Yes.

[A]

Okay. All right. I don't know what to say. That sucks because that would have really been helpful for you.

[B]

Yes.

[A]

You're like, yeah, I know. Thanks.

[B]

Yes.

[A]

Oh, my gosh. Has anything gone right in the last 10 years?

[B]

Absolutely. Of course.

[A]

Tell me about it a little bit.

[B]

Well, I mean, just in terms of going right. Yes. Her three siblings, they all have tested negative for all antibodies. We've done trial net on all three of them. Her two older siblings have neither of the genes for celiac that they tested for. And her younger brother does have one out of the two, but he does not show symptoms yet. But he does get tested every other year unless we see symptoms. So so far he does not have celiac.

[A]

Okay, well, that's good news. Seriously, how would you characterize the diabetes as far as impact on your life? Like, is celiac more of a day to day impact than diabetes vice versa? Is it not fair to compare them to each other?

[B]

I feel like diabetes takes so much more thought in terms of, like making the decisions. For example. We just. It's her first year taking state testing. So it was like, you know, planning for that. You don't necessarily want her to be too high or too low. I don't want to disrupt the other kids that are taking the test with her alarms going off.

[A]

A lot of planning.

[B]

Yeah, definitely a lot more planning and a lot more like trying to predict the future. She dances on Fridays. She goes from 4 until 7:45 at night with no breaks. So like you have like we figured it out, but that takes a lot of planning that other kids don't have to think about.

[A]

Yeah. Is it impactful on her? Do you see it? Does it drag her down?

[B]

I think sometimes. I know that last year was harder. She hated going to the nurse all the time. And this year she is treating Lowe's in the classroom and her friends have actually taken up to. They have a schedule. It's written in her folder because I guess they were like fighting over who got to walk her to the nurse, so.

[A]

Fighting over who got to get out of class.

[B]

Yeah, yeah. So the teacher. The teacher had to make up like a little schedule. So I don't think she's as down and out about it as much anymore because I get like. Not that it's cool, but like it's. It's not like a burden, I guess because she's not like going to the nurse by herself and missing out on something. There was a year where she like was missing art because she had to leave for the pre bolas for lunch during art and that was like her favorite. And I spoke to the school and we worked it out. They're. They're pretty flexible and accommodating when. Within reason, of course, but they, They've definitely been good partners in this out.

[A]

Outside of her friend group, is she okay with people seeing her devices and knowing or does she. Is she more private? How does she handle?

[B]

She rocks them. Yeah. She doesn't mind. They're usually on her arms. So they're pretty visible except for in winter, but you know, springtime fall with short sleeves, they're almost always one on each arm.

[A]

Okay. There's nothing that she. She feels self conscious about then.

[B]

No, she used to. About her stomach because we actually. So celiac is diagnosed on a marsh score and she was. I think it's like marsh score 3C, like whatever is like basically one of the worst. Like where the villi is the most blunted. And because I. I mentioned her symptom was constipation, we couldn't use her stomach and when we did it would get like infected because I guess the pressure of her stomach being so bloated and, and full pushing on the cannula.

[A]

How about that?

[B]

So she has like some scarring and like it was just always very painful on her stomach. So she's a little self conscious about her stomach. But it's gotten better now that that's all been resolved. But it took a pretty long time for her GI tract to get back to normal.

[A]

Gotcha. Wow. Gosh. That's your husband help with any of this or is he hiding somewhere or how do you manage the day to day stuff is.

[B]

It's fantastic if I'm gone for the weekend or, or anything. He's really good at it. But I generally, because I stay at home, take the majority of the reins.

[A]

Yeah, I did. I mean that's what we did too. I found that. Well, Kelly and I both found that when you try to pass it back and forth all the time, you almost spend more time explaining it. The handoff to the other, to the other person. It just feels like, you know what I mean? Like it's, you're like, well this is what happened today and so far this happened and you know, she was low here and it feels like she might be more sensitive today and blah, blah, blah, blah. And then by the, you try to give that over to somebody and they're like, ah, I can't. It's, it's.

[B]

I know he's a little more impatient with the highs. He likes to try and crush and catch more. He's a little more bolder than I would be sometimes because he just like, he's just like, ah, and just like rage boluses.

[A]

Does it work for him?

[B]

I mean usually, yeah.

[A]

Then what, what makes you nervous about it?

[B]

I don't know. I mean I, I think, I think I'm more like trial and error person. I'll be like, okay, let's try one unit. Oh, that wasn't enough. Next time I'll try one and a half and he'll just be like whatever, two units. Like he just like picks a random number and it's just like she could just drink juice if it's wrong.

[A]

Oh, look at him after my own heart. Yeah, yeah. No, I, I spent some time the other day looking at a blood sugar and I was like, this is not going to do it. Like, you know, like these little numbers are just never going to move. This. We're going to do this all day if we, if we keep hitting it like lightly like this. Yeah, well, listen, he doesn't listen to the podcast, so that's something. He came up with it on his own.

[B]

He does not. I did make him listen. Which episode was it? Oh, the one with Katie Beth.

[A]

Oh.

[B]

I was like, you have to listen to this. Oh.

[A]

Oh, yeah. She was interested.

[B]

So he did listen to that one.

[A]

Well, what's the takeaway for you when you listen to her? I know this is a pivot. Anyway, Katie Bethan, she is one of the people that went through the Chicago eyelid transplant, blah, blah. She's not using insulin anymore. What did you think when you listened to it?

[B]

I think this is the first time I've heard something that sounds like there's a potential for a cure in her lifetime. I'm not thinking five years or even 10, but she's still so young. I think that this has been the potential to, at some point, change her life. So I, like, literally, I'm actually even already tearing up just saying that, like, I, it's the first time I felt like this. There's an end in sight.

[A]

It felt hopeful.

[B]

Yeah.

[A]

Unlike other stuff that you've heard about, right?

[B]

They, they've had, like, potential, but not the same kind of potential where it's like, okay, cool. That's a, that's a nice little step up on the ladder. But this feels like it's a huge leap, and yet.

[A]

So you're that excited by it, but you're still able to be realistic about it, because it's not. I mean, they did hand pick those 12 people, so. You know what I mean? Like, it's not exactly like, it's not like anybody could have just walked up and had it happen. They, they picked very specific people who, whose health was in a very specific situation, and they're gonna. I mean, his plan is to continue to expand it. The doctor, you know. Did you ever listen to the doctor when he came on?

[B]

I did, yes.

[A]

Okay, good, good, good. Well, that's really. And what was your husband's takeaway then?

[B]

He was pretty hopeful too. I, I don't know that he, like, was as hopeful as me, but, I mean, he thought it sounded cool.

[A]

Yeah, no, no, it's. I was wondering, because it sounds like his. He's got, like, a slightly different vibe than yours, so I was wondering what his takeaway was. Yeah, I, I, I, listen, I agree. I think it's. I think it's super interesting and really hopeful and definitely something that I hope continues on, but I don't know what the outcome will be as far as time goes. Even if they perfected it to where it was just like, hey, anybody who has type 1 diabetes, come on over. I wonder how long that would take.

[B]

Yeah. I mean, the fights with insurance sometimes are ridiculous now, so I can't imagine what it's going to take for it to just get to where it's something that anybody on insurance can do. That's why I feel more like in her lifetime, maybe in like 50 years.

[A]

Yeah, no, I hear you. I think it's. That's more than reasonable. Episode 1787 is called cured. Patient nine speaks. If anybody's interested in hearing Katie Beth on the show. And I hope. I hope I can have her back at some point too. See how it's going for in a year or so.

[B]

She's doing great in terms of media. I don't want to say promoting because it's not like something she's promoting in terms of getting money for or anything, but just getting the awareness out there.

[A]

Yeah. No, no, no, no. She's. She's hustling. She really is.

[B]

Yeah. She wants the world to know.

[A]

It's awesome. Really is cool. All right. Is there anything that we haven't talked about that we should have. I know this was a little weird because an hour and five minutes ago you didn't think you were doing this. So were you? Did you stop Being nervous, I guess is also a question.

[B]

I think so. Do I sound like it?

[A]

I thought you were fine. Yeah. I didn't. I didn't notice you being nervous. I thought you were a really good storyteller. I like. I like how when you jump on, you're like, I'm not going to know stuff, like details.

[B]

Well, I feel like sometimes, like you've asked, like, what was the A1C diagnosis or the CPEP. Like, some people know those, like, numbers. I definitely. I think I was in such a fog.

[A]

Oh, please. I don't know any of that. I. Listen, pressure me right now on what day Arden was diagnosed, I have no idea. It was in August is the best I can tell you. So I don't know that kind of stuff either. I just asked the question. Sometimes people know the answers and sometimes people don't, you know, but it's. It's a. It's very nice of you to jump on. I do want to know, management wise, how involved are you still in, you know, counting carbs, coming up with bolusing strategies, that kind of stuff?

[B]

I pretty much do all of it. She doesn't eat school lunch because celiac, so she eats breakfast at home. She kind of has Mostly the same breakfast every day. Like I said, she's easy in that sense. Like, my other kids are definitely not like that. So I definitely understand when people post, like, oh, my kid would never. I get it. But she'll eat, like, eggs and fruit every morning and she'll. And if it's a fruit that's a higher glycemic, like an apple or banana, she will. I'll be like, peanut butter. She's like, yeah, so, like, it helps. And she'll eat the eggs first, which, again, promoting one of your. Your podcast episodes, Glucose Goddess, about order of food eating. Like, she will listen to me and follow that. She'll drink water when waking up most of the time, which is also another one of her tips. So she does what she needs to do because she doesn't really know it any other way either. Because I've been kind of prompting it. Since she's, you know, before she could even talk or walk, I've been like, water first, eggs first, then fruit. Like, that's just kind of the way she's always eaten lunch. I pack it at home. She picks what she wants, but we pack it. She actually really likes using the scale and. And writing down the carbs on the post it note herself. And then she brings the post it note with her to the nurse.

[A]

I think that gives her a feeling of being, like, not in control, but, like, you know, gives her agency in the whole thing, like choosing the order she eats and weighing the foods. Or do you think it really is just that she's so. I don't. I don't want to use the word

[B]

like,

[A]

but it's so ingrained in her that she doesn't have a choice. Or do you think it's like a. I'm not sure if I'm being.

[B]

Yeah, I think it's just kind of her normal routine. But she seems to be at an age where she wants a little more independence. She might pull back. I know there's, like, a lot of kids that don't like managing their diabetes, and I get it. I would be happy to do this for her as long as possible so that she doesn't have that burden. But for right now, she seems. She. She wants to even give herself insulin at school. That's kind of another slightly longer story about independence versus not independence. And a roadblock we ran into this year

[A]

with what the school would let you do.

[B]

Yeah. So I don't know how long ago if the forms were exactly the same, because Arden's like 21ish. Right. So I guess the doctor, like the doctor's forms or orders that, that we put in at the, with the school, it's either, it's kind of black and white, it's either independent or dependent. And I had asked and spoken with her endocrine and I said, hey, could she be like, when they list what you need to be to be independent, it's like carb count yourself and all these different things. I said she can do all these except the carb counting. Like I wouldn't ever want her looking at a class party snack brought in and carb counting it herself. I don't feel comfortable with that. I was like, but can she give herself insulin? Like if I'm writing it on a post it note every day and it's saying her, you know, her lunch is 40 carbs. Can she input that into the pump herself and give herself insulin? Last year she had a one to one para and I said, and you know, and her para oversee it, just see it like visually have an adult have eyes on it. Because the para was not allowed to give insulin in New Jersey. Only a nurse, a school nurse can give insulin. So her teacher can't. And she only can if she's deemed independent. So the para is like, can she just have eyes before she hits the start button and confirm? Like yes, 40 matches the post it note. That's good. We don't have to go down to the nurse. She really wanted to be able to do that. The doctor felt comfortable writing off on that. And I was like, can we hand write this in? And the school was like, no. And we kind of, they, we went back and forth and they printed me out some stuff from their bylaws or whatever, their lawyers. And they were like, no bylaws dummies

[A]

with their dumb rules.

[B]

I mean I'm her parent and her doctor is willing to write this. So I just, I'm funny that some superintendent or whoever it was was like, no. Our lawyer says no, that's never met my kid. But like I said, that's a longer.

[A]

It sounds like a lawyer saw that and said no to it.

[B]

Yeah, exactly. But that's never met us. So yeah, she would like to do it herself. She really wants to be in the classroom doing a lot of this herself. And that is how we do it. When she's at other things she goes to religion. And last year when they were practicing for communion and doing, you know, checks as the host, like she gave herself insulin for, for her checks and you know, she'll just text me or I'LL text her. And we do that if she's, you know, at a friend's house or whatever.

[A]

Fine everywhere, right?

[B]

It works fine everywhere, but the school won't allow it.

[A]

Is there a world where you can just do it? Like, I mean, I guess they would know if she didn't come down and, like, do.

[B]

Yeah, yeah, they would.

[A]

Did you try the argument about her missing all the class time?

[B]

I did. I did. Well, that's when we kind of changed things up. That was, like, part of that art story where she was missing art and being sad and I didn't change things up.

[A]

They cared more about what the lawyer said. Or more about her learning, is what I was wondering.

[B]

They care more about what the lawyer says?

[A]

Yeah, I think so. Oh, my gosh. Well, Alien, I really appreciate you doing this with me. You really saved me today. Thank you.

[B]

First of all, no problem.

[A]

I was all amped up to record, and then this person, like, dropped out the last minute. I was like, oh, come on. And. And then. And then I thought, oh, I'll just. I sometimes have a. I don't really know how to explain this. I guess somebody would call it, like, imposter syndrome or something like that. Like, I made a post to put up to say, like, hey, you know, could somebody jump on and record with me? And I really do mean it that way. Like, I earnestly. That's how it occurs to me. Like, oh, I hope somebody would be willing to do it. And now I'm looking. I just looked up because, you know, I mean, the post has 127 comments,

[B]

and I'm still, everyone wants to talk

[A]

with you, but you have no idea what it's like to be in my head. In my head, I'm like, this whole thing's almost over.

[B]

Over.

[A]

Like, I. My wife is so sick of me saying that. I was like. She's like, what are you talking about? I mean, how long can a podcast about diabetes last? And she goes, well, it's been 12 years so far. And. And she's like, it feels like it'll last as long as you want it to last. And I was like, well, I wanted to last a much longer time. She was, well, then stop talking about. I'm like, but it's hard not to feel that. Like. Like, I'm stunned that anybody answered me. I know that might sound ridiculous, like, to you, but, like, to me, it doesn't. Like, I looked at it, and I was like, nobody's gonna answer this. And it's just really lovely. So now I'm Basically setting up the rest of the year with recordings. When I get off with you, I

[B]

don't think I would have had to be brave enough to just set up on my own and be like, oh, I have enough to say and let me just email him. I'm not.

[A]

You needed the Thelma and Lee's? Yeah, it was we're driving off the cliff thing.

[B]

I was like, okay.

[A]

Well, that's actually what I was hoping is to grab somebody who. Because you were terrific, by the way.

[B]

Oh, thank you. Yeah.

[A]

Yeah. You're absolutely fantastic. And. And I'm glad that you did that. Yeah. I don't know what it is exactly. I just did something. I don't think I'm supposed to say, but I just did something with Omnipod. Like, I filmed something with them and

[B]

mentioned it, but continue.

[A]

And I can't be detailed about it. And, I mean, you'll see it eventually. And when it got done, I walked away and I thought, oh, I wipe that up. Like, it's exactly how I felt when I turned and walked. I was like, that's going to be an abject disaster. They'll probably cut this from the thing. Like, I. They're like, oh, my God, they're being so garage toy when I'm walking up. Look at them trying to be polite to me. They probably think, oh, does he have a head injury? You know, as I was walking away and I really felt that way. Like, I was like, I definitely did not do a good job, and I'll. I'm going to exp. And then I stopped myself. I was like, oh, my God, this is what everyone does when they come on the podcast. Do you have any idea how many people I stopped recording with? And they go, listen, if you don't want to use that, it's fine.

[B]

And I'm like, no.

[A]

Then I'm like, no, no, no. I'm like, no, what are you talking about? And they're like, I mean, that was terrible. And I'm like, I wonder what's wrong with me is what I thought. Because I could. Because I got a message from my. I don't want to use people's names, but I got a message from my person. And she. She's like, oh, my God, your part went so great. Like. Like, here's some. Like, you know, like, we're so excited. And I'm like, oh, okay. Because I spent the last week thinking, like, oh, I actually texted her and I said, listen, when you let me down, use kind language. She's like, what are you talking about? I'm like, well, I obviously messed that thing up. And she goes, we didn't think that. And I was like, oh, well, in the moment, it was exciting. I was like, but when you stop and look at it, you're going to realize what. And she.

[B]

You're very charismatic. I'm sure you probably, like, blackout and just, like, go about your normal personality. And it's like, great.

[A]

Well, thank you. And that's kind. But, like. So I was at the dentist office yesterday, chatting it up with the ladies at the front, as I do. We have a nice relationship because I'm a person with a number of different crowns, so it's not like I don't know the people at the dentist's office. And they asked about the trip, and I was explaining that I really felt like I messed the whole thing up, you know, et cetera. And she's like, no, I saw a thing you did online recently, and she was referencing the three tips for the Omnipod 5. Like, to make the Omnipod 5, like, adjustable. And. And she's like, that video you did, it popped up on my feed. She's like. She's like, you were great in that. She's like, it's. It's very natural. And I said, no, no, no. And she pulls it up to stick it in my face. And as soon as she showed it to me, I went, look at my neck. That's what I said. She's like, what is wrong with you? I'm like, I don't know. My neck looks ridiculous in this. And she's like, no, stop it.

[B]

So. Well, I'm glad you told me I could turn the video off.

[A]

Oh, my God. Oh, no. Yeah. You would have killed me if we turned the video on for this. I would have just been like. The whole time, I would have been thinking, like, I look ridiculous. But I don't know. I really, like. I sat and thought about it for a while, and because we were talking, I've really known these women for a really long time. We're friendly, and. And she goes, what do you think's wrong? And I said, my best guess is, like, I was fat when I was growing up. And I really think I have a hard time seeing myself correctly. Like, I really do think that's what it's about, because when they sent me the photo from the thing that I did, I looked at it and I thought, oh, I. I don't look right. And then I showed it to my wife, and I was like, hey, do I look bad? In this. And she goes, how so? Like, she wasn't even tracking what I was asking her. And so I stopped because I don't want to seem needy because we've been married for 30 years, and I assume she's looking for any reason to get rid of me. And so, like, so she was just. I. I said, okay. I'm like, I don't look like it's. But she's like, no, you look fine. And I went, oh, okay, great. And. But I don't know. Like, it's just. It's. Whatever it is, it's stuck to me. And I'm 54. I don't think I'm shaking it at this point, but we'll see. Anyway, I didn't think anybody was going to say yes when I put it on Facebook. I actually have a plan for, like, if I should delete it. So I'm not embarrassed after I put it.

[B]

No. I think you have, like, so many episodes. That's also what, like, makes me come back. Like, it depends on my mood. Like, do I feel like I need to, like, change a setting or retouch up with something? Usually I feel pretty confident in that stuff. However, as technology changes, obviously, when we got the Omnipod 5, of course, I was listening to those episodes. Whenever you have debts. Come on. That talks about their upcoming stuff. Or I always listen to that stuff, for sure. And then it's just like, oh, do I want to just listen to someone talking? Do I want to listen to. I always, again, listen to Jenny, too, because I feel like those are the types of things that I need the information on. But even my son, he's always like, why are we always listening to this?

[A]

Oh, well, tell that kid I said, go to hell. I mean, what are we doing right now? I tell my bills and kids that have to go to college. Well, one went to college, but I still pay him for the other one. I can't tell them to shut up. All right? And subscribe and follow. I. You know, it's funny. I've been listening to. I've been listening. They call it a podcast, but it's on YouTube, so I don't know if I'm just old, but if you're videoing yourself, I don't think that's a podcast. I think that's a YouTube video. I know this is just semantics.

[B]

I agree.

[A]

Yeah. But. So I've been watching these interviews this guy's doing, and he's starting to grow on me a little bit. And I've seen 10, 20 of them. And in the beginning of everything, he does an impassioned like, hey, listen, please subscribe to this. You have no idea how much. And when he does, I go, oh, sounds so thirsty. And I know that's a word I shouldn't be using at my age, but he literally sounds. He sounds. It sounds pathetic to me. And. But I know exactly how he feels because it is the lifeblood of, like, making content and putting it up. Like, if you guys don't subscribe, I'm dead. You know what I mean? Like, it'll. This. Will you wait till you see how fast this goes away if people don't subscribe, follow, download, listen, like, do those things, share, etc. It dies really quickly. But when I heard someone else do it, I was like, dirty. And then when I do it, I'm like, no, you don't understand. It's very important.

[B]

Yeah, I post a lot about, like, for awareness and stuff. I. I just tend to be a person that enjoys sharing. But. So as a result, though, I get a lot of people sent my way asking, like, hey, I know someone that has type one. Can I send them your information? I feel like anybody that's been diagnosed within the last nine years, like, within the vicinity of me, even Ainsley's doctor, is like, can I. Can I send someone your number? And my daughter, my oldest daughter, her kindergarten teacher, she pulled me aside one day and goes, so I know someone that was diagnosed. Can I give them your information? And I just. I always. I always. I love that. Also, in the albums and your Facebook group, it's so easy to find the episode guides. I'm always like, here, start here.

[A]

Yeah, start there.

[B]

And then if you have questions, Isabelle

[A]

fixed the Facebook group so that it's easier. And I've just done some stuff with the website, actually. I put up a page. It's juicebox podcast.com, and then it's/clinician-share. And it's literally a website that's just to make it easier for doctors to share printouts and handouts and links.

[B]

Oh, that's. That's great.

[A]

Yeah. So I'm. I'm. I made it. And it's funny because after I made it, I thought I. Maybe I should have just called it Share instead of clinician share. Because as I look at it, I realize that there are more people like you that are sharing the podcast than I'm aware of. And I would like to make it easier for you guys as well. I don't know. I have a very short amount of time to Make a decision. But I think I'm going to keep this one this way. But I think I'm going to use the format of the page and try to figure out something to put right on the front page of juicebox podcast.com so that people can share right from that.

[B]

Yeah, everyone's different learners. I know. For me, the Facebook groups were so overwhelming in the beginning because of the amount of questions, and then the amount that you're like, wait, do I need to know about this?

[A]

Why?

[B]

What is this? And just like. And then you post a question, and then sometimes you have the people that are like, use the search button.

[A]

Well, those people can shut up. They don't realize how. They don't realize how important it is for there to be constant conversation again.

[B]

Well, because you can't filter through thousands of things and find.

[A]

Well, not just that, but if you don't. If, If. If a Facebook group is not active, then it dies. Then there's no reason to go to it then doesn't matter what kind of good information's in it because nobody will ever be in it again. The pressure to keep people connected to things when you make stuff like, this is probably the worst part of my life. Like, it really. It really is. It's. It must be what a small business owner feels like when they open up an ice cream shop and then everybody in town's tried the ice cream and they're like, okay, by. You have to come back now. Like, you.

[B]

And they all have an opinion, too.

[A]

Yeah, it's just. It's very. It's a. It's a difficult thing to keep. Like. Like, I swear to you, it's not a thing that I guess would be easily understood by somebody who's not in my position, but my greatest accomplishment is keeping the podcast going. That it is. That is not easy to do.

[B]

So, I mean, moderating that group has got to be the most difficult that.

[A]

I don't have too much trouble with that anymore.

[B]

I've, like, I usually just scroll past, but I, like, I laugh at something. I'm like, oh, that's about to be shut down. And I'm not going to. That's about to be shut down because I don't want to be in the drama, but I just see it and I'm like, oh, that's funny.

[A]

Yeah. No, And. And then people like, you know, fascinatingly will, like, judge you for it somewhere or something. Oh, he'll.

[B]

He.

[A]

So I heard. Saw somebody say recently, like, he bans everybody. And I was like, we've Barely banned anybody. Like, there's 84,000 members, I think, as of today. And the amount. The amount of people that have been banned out of that group in years and years and years is a. It's a very small number.

[B]

Like, you know, banned accidentally.

[A]

Did you Banned accidentally out of that?

[B]

Yes. Isabelle helped get me back in.

[A]

Did I really? Oh, I'm glad I did. That's nice.

[B]

I. I messaged Isabelle and I was like, I don't think I did anything. And if I did, can you please tell me what rule I broke? I don't understand. Well.

[A]

Well, I. I'm glad you were nice about it because we're just doing our best and you're trying to. Like, sometimes people are pushing business, and it's just a thing we don't let happen. Like, even if I just. Today somebody said, hey, can anybody tell me about any good virtual, you know, support systems? Like, they're just asking for, like. Like the place Jenny works or something like that. And this person jumps in and goes, I am. Blah, blah, blah. And I have this, and this is my link, and I'm. I had to remove it. I'm like, you can't. You can't promote yourself. Like, if somebody else thinks you're a great thing, that's awesome. But you can't do it because then the group turns into a billboard, and then that's another way it dies. Like, you can't. We can't just turn it into the yellow Pages. And. And then some people understand, and then some people get mad and then they send angry notes and you're just like, okay, but to your point, it's not easy to run a Facebook group, but it is really valuable. And I find it. Actually, I find it uplifting to see all those people in there. But anyway, all right, I'm going to let you go. You were very kind to do this. Thank you so very much. I really appreciate it. If you hold on one second, I just have to tell you a couple things.

[B]

Sure.

[A]

This episode of the Juice Box podcast was sponsored by US MED usmed.com juicebox or call 888-721-1514. Get started today with US MED. Links in the show notes links@juicebox podcast.com head now to tandem diabetes.com juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem MOBI system. All right, kids, we're done. We're at the end. Just do me one last favor, if you can. If you could. Please. If you have the need or the desire for something that one of the sponsors is providing, please use my links or my offer codes. They help the show so much, and that means me. You're helping me to make this podcast every day. You're helping me to support support the private Facebook group, do all the things that I'm doing. I'm not asking you to buy something you don't want or something you don't need. But if you're going to get one of these items, use my links or my offer codes. They help me a ton. Thank you so much for listening and for supporting. I really do genuinely appreciate it. I'll be back very soon with another episode. Sam.