#1775 Bear Attack - Part 1

Summary

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Juicebox Podcast #1775 “Bear Attack – Part 1”

Host: Scott Benner
Guest: Domino
Date: February 17, 2026

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Episode Overview

This deeply personal episode features Domino, a 50-year-old woman living with type 3C diabetes—a rare condition resulting from the surgical removal of her pancreas after years of misdiagnosis and grueling health struggles. The conversation digs into Domino’s remarkable health journey, from severe, unidentifiable illness and near-death hypoglycemia, to her muted diagnosis, the joys and challenges of life post-pancreatectomy, and ultimately how the Juicebox Podcast and community became lifelines for her survival and resurgent hope.

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Key Discussion Points & Insights

1. Domino’s Health Journey: From Mysterious Illness to Type 3C Diabetes

• Initial Diagnosis and Surgeries

  • Domino endured ten years of misdiagnosed infection that ravaged her body, resulting in multiple surgeries, including gallbladder and partial stomach removal.
  • “I was very sick. I had, you know, infection just constant... throughout my body for those ten years.” – Domino [07:13]
  • Eventually, a rare disorder called nesidioblastosis (abnormal overgrowth of insulin-producing cells in the pancreas) was diagnosed after years of severe hypoglycemia.

• Living With Nesidioblastosis

  • Domino experienced years of undiagnosed, life-threatening low-blood-sugar events, including seizures and passing out.
  • “It took almost six years to diagnose it.” – Domino [03:33]
  • The disorder, usually seen in infants, was especially rare in adults and complicated by her previous surgeries.

• Surgical Resolution: Total Pancreatectomy

  • Domino underwent a total removal of her pancreas, as well as most of her stomach and part of her intestines. This marked her “diaversary”—the first year since the major surgery.
  • “This time last year I was in an eight-hour surgery. They were removing a feeding tube that I had been on for 412 days and woke up, no pancreas, most of my stomach gone, some of my intestines gone.” – Domino [22:40]

2. Struggles With Diagnosis and Daily Living

• Family and Support

  • Domino comes from a family with 11 full siblings and several half-siblings, none of whom have experienced anything medically similar.
  • Her family background highlights that her condition was neither hereditary nor common, emphasizing the isolation of rare-disease experience.

• Misattributions and Delayed Help

  • Symptoms were constantly attributed to malabsorption, digestive reconstruction, and “dumping syndrome” resulting from her surgeries.
  • “I really just kept writing it off to, ‘This is my new anatomy.’ They're telling me it’s malabsorption, it’s nutrition... I just thought that was my new normal.” – Domino [15:36–16:27]

• Moment of Diagnostic Breakthrough

  • A new doctor finally recognized the link between nutritional intake and Domino’s hypoglycemic events. By orchestrating a timed lab as soon as symptoms hit, they confirmed critically low blood sugars (in the 30s mg/dl).
  • “He said, okay, here’s what we’re going to do. You're going to eat in your car...As soon as those symptoms come on, go straight in, cut in line, and have him draw your blood.” – Domino [18:32–19:16]

3. Life After Surgery: Managing Type 3C Diabetes

• Immediate Aftermath & Technology

  • Following pancreatectomy, Domino was quickly started on the Omnipod 5 insulin pump. Just two days later, her endocrinologist suffered a stroke, leaving her without medical guidance for months.
  • “Two days after I started my pump, my doctor had a stroke...I was left with no doctor and two days on the pump, not knowing what I was doing.” – Domino [28:30–29:02]
  • Seizures and passing out from severe lows continued as she struggled to titrate insulin by herself.

• Community as Lifeline

  • Domino discovered the Juicebox Podcast via online searching (“desperate Googling”) and joined the Facebook community for support.
  • “I thought: I’m gonna die if I do not figure this out. These seizures are killing me. I’m missing something and no one’s helping me...and I found you.” – Domino [31:54–32:08]

• Teaching and Life Purpose

  • Prior to illness, Domino was a preschool teacher and later became a master boxing instructor, mainly teaching women, girls, and Parkinson's patients.
  • Her tenacity and sense of “getting back up” through adversity stem from her boxing ethos:
  • “I use the boxing. You get knocked down and get back up. Knock down, back up.” – Domino [25:53]

4. Current Challenges and Hope

• Physical and Emotional Toll

  • Recurring “sticky lows,” unpredictable digestion, and absorption issues, plus ongoing hypoglycemic seizures continue to disrupt her life post-surgery.
  • “Sometimes there are just sticky lows. They take a long time to get up, and I don’t know if the digestion is slower at that time.” – Domino [46:29]
  • “I regularly go below the 40 on my Dexcom, where it just drops low and with finger sticks I’ve seen in the 20s.” – Domino [44:04]

• Dark Humor and Perspective

  • Domino retains a dark sense of humor amidst the adversity, quipping about “dying in a bear attack” if she chokes on gummy bears treating a low.
  • “Please just say I died in a bear attack. Just give me some dignity. Please don't tell them I asphyxiated on gummy bears.” – Domino [47:41]

• Ongoing Struggle for Balance

  • Her A1C is “too low” (5.3), representing skewed data due to frequent lows and other blood factors.
  • “Even now, you know, [doctors say] ‘You’re 95% in range...this is great.’ But I think, no—you know, when I have two or three hour stretch in the night of a sticky low and seizures, and frequently—that’s not...optimal.” – Domino [43:25]

• Gratitude for the Podcast and Community

  • Domino attributes learning how to “survive” post-pancreas removal to the Juicebox Podcast and its practical “senseful, sensible, and balanced” approach.
  • “I would not—absolutely not—be where I am now if I didn’t start listening to the podcast.” – Domino [40:25]

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Notable Quotes & Memorable Moments

• On Living With a Rare Disease:

  • “My pancreas had an overgrowth of cells, so it was overproducing insulin...flooding my body with insulin and causing seizures and severe hypoglycemic episodes.” – Domino [04:05–04:19]

• Dark Humor in the Face of Adversity:

  • “If I die in my sleep choking on gummy bears, please just say I died in a bear attack. Just give me some dignity.” – Domino [47:41]

• On Community Support:

  • “I believe in what you’re doing and I do not put my name on stuff...if I don’t believe in it. This is life.” – Domino [34:35]

• On Medical and Emotional Upheaval:

  • “It feels like you’ve been lifted up and dropped a lot of times.” – Scott Benner [25:48]
  • “Absolutely.” – Domino [25:50]

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Timeline of Key Segments

| Timestamp | Segment Summary | |--------------|-------------------------------------------------------------| | 03:15–05:19 | Total pancreatectomy, nesidioblastosis diagnosis | | 08:02–09:22 | Decade of illness, recovery after major infection surgery | | 15:36–16:27 | Misattribution of symptoms; life as a boxing instructor | | 18:09–19:41 | The breakthrough doctor visit that leads to the diagnosis | | 22:40–24:51 | Reflecting on the “diaversary” and post-pancreas life | | 28:30–29:47 | Losing her endocrinologist right after starting on a pump | | 31:54–33:27 | Domino discovers and joins the Juicebox community | | 43:12–44:04 | Repeated hypoglycemia and misleading A1C | | 47:41 | Bear attack / dark humor about gummy bears and lows |

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Tone and Style

The conversation is candid, often alternating between dark humor and raw vulnerability. Domino’s spirit shines as she balances honest descriptions of hardship with comedic asides and a drive to help others. Scott’s empathetic, conversational style makes for both informatively detailed and emotionally resonant listening. The episode serves as a powerful reminder of the complexity of rare diseases, the pitfalls of misdiagnosis, and the lifesaving power of real community and patient-led knowledge.

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Conclusion

Part 1 of “Bear Attack” chronicles Domino’s medical odyssey and determination to advocate for herself, despite unrelenting obstacles. The episode is essential listening not only for those managing complex diabetes, but for anyone seeking courage, humor, and hope amidst daunting health challenges. Listeners are encouraged to continue into Part 2 for the next chapter of Domino's story.

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Transcript

[A]

Welcome back friends. You are listening to the Juice Box Podcast.

[B]

Hi, my name is Domino. I'm 50 years old and I am a type 3C diabetic.

[A]

All right, let's get down to it. You want the management stuff from the podcast. You don't care about all this Chitin and chatting with other people. Juicebox podcast.com lists they are downloadable, easy to read. Every series, every episode, they're all numbered. Makes it super simple for you to go right into that search feature in your audio app. Type Juice Box 1795 to find Episode 1795 juicebox podcast.com/lists if you're looking for community around type 1 diabetes, check out the Juicebox Podcast Private Facebook group juice box podcast type 1 diabetes but everybody is welcome. Type 1 type 2 gestational loved ones it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juice Box podcast type 1 diabetes on Facebook. Nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. This episode of the Juice Box Podcast is brought to you by my favorite diabetes organization, touched by type 1. 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 Today's episode is also sponsored by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages 2 and up. Learn more and get started today at tandomdiabetes.com Juicebox the podcast is also sponsored today by the Eversense 365, the one year wear CGM. That's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the EversenStonow app. No limits.

[B]

Hi, my name is Domino, I'm 50 years old and I am a type 3C diabetic and actually today is my one year diar versary.

[A]

No kidding.

[B]

No kidding.

[A]

Way to make it a year. Good job. Right that's awesome. 3C transplant surgery. What happened?

[B]

Total pancreatectomy.

[A]

Oh. Why? What led to it?

[B]

So I was diagnosed with the rare condition called necidioblastosis.

[A]

What the hell is that?

[B]

They're still figuring it out.

[A]

Has a name, but they don't know what it is.

[B]

Yeah, it's. It's very new. It's more. It's still rare, but more common in infants. Okay, so it took about six years for them to diagnose me.

[A]

Do you know how to spell it?

[B]

I do know how to spell it.

[A]

Go do it.

[B]

N, E, S, I D, I O B, L, A S T, O, S, I, S. Jesus. So, Nesidio blastosis.

[A]

Well, I'm gonna let Google Gemini look into it for us.

[B]

And it's complicated, but basically, my pancreas had an overgrowth of cells, so it was over producing insulin.

[A]

Wait, you had. Oh, you had too many beta cells.

[B]

I had too many, and they just went highway or so. It was flooding my body with insulin and causing seizures and severe hypoglycemic episodes.

[A]

Oh, my God.

[B]

But it took almost six years to diagnose it.

[A]

Wait, you lived like that for six years?

[B]

Yes.

[A]

All right, we're going to get to that. But first, make sure I understand this correctly. Domino, you are probably one of my biggest fans. Is that true or not?

[B]

Absolutely true.

[A]

You are so nice to me.

[B]

Go down that road whenever you're ready.

[A]

You are so nice to me online that I. I judge everything my wife says to me on the level of. Is this as nice as Domino would have been to me in this situation? But, yeah, I want to figure out how you got here. But first, honestly, like. So here I have it. Nice oblast. I don't know how to say. It doesn't matter. A rare medical condition characterized by an abnormal overgrowth of the beta cells in the pancreas. Man, talk about the wrong. Jeez, Everybody else is looking for beta cells, not you. You got too many.

[B]

Right.

[A]

Two distinct forms of the condition based on when it appears congenital in infants and acquired in adults. This is extremely. Oh, good, Domino. Good news. You have an extremely rare condition in adults. In recent years, it has been increasingly linked to gastric bypass surgery. Have you had gastric bypass surgery?

[B]

So, yes and no. Before I had these symptoms, I went 10 years misdiagnosed with deadly internal infection. So I did have removal of the stomach, some reconstruction of the digestion and the intestines from just all the damage from that 10 years of infection that went undetected.

[A]

Do you have. Did you Ever find out what the infection was from?

[B]

They don't know where it started. I had surgeries that it could have come from that. They don't know if I got it in the hospital, but yeah.

[A]

Oh, my gosh. That's terrible. I'm sorry. Let me finish reading for a second. In these cases, the condition sometimes called non insulin insulinoma pancreatitis. Jesus. Why do people name stuff like this Non insulinoma pancreatogenous hypoglycemia syndrome or niphs, can develop. I guarantee I didn't say any of those words right. Can develop years after the weight loss surgery, likely due to a hormonal change in the gut that stimulates beta cell growth. How come they can't stimulate beta cell growth for everybody else?

[B]

Right.

[A]

I know they're doing it by mistake. And you.

[B]

Yeah.

[A]

So how did it start? Did it start, like just with a bang or a whimper? Did it. Did you slowly start feeling lightheaded and shaky or was it just like full on hypoglycemia?

[B]

It was sporadic at first, so that 10 years of the misdiagnosis and then finally treating that and did the major surgery with all the damage. I mean, they were having to dilate my esophagus and, you know, a lot of just GI removal and reconstruction after they did that. I did start feeling better those 10 years. And actually right up until that, I was not doing well. I had done my will, all my. In the life stuff. I was on oxygen. I mean, I was very sick. I had, you know, infection just constant. Yeah. Throughout my body for those 10 years.

[A]

Oh, my gosh. From what age to what age do you think?

[B]

Oh, gosh. So 2008 to 2000. Actually 2007 to 2017. And they finally diagnosed me with that infection in 2017. And early 2018, I had the major surgery. But even before that surgery just to kill that infection, it took several rounds. They quadrupled the medicine. Quadruple the medicine. Just my body was done.

[A]

Oh, my gosh. So after the surgery, I mean, you don't just bounce back real quickly. I had a small procedure yesterday that was nothing, and I came home and slept for five hours. So after being 10 years sick and having this major surgery to kind of clean things out, how long did it take you to recover from that?

[B]

It really was pretty quick. I mean, from the extreme of where I was, it didn't take very much for me to start feeling better.

[A]

Okay.

[B]

So I. I really had a little bit of a window of getting my life back. I was able to exercise and eat differently. And so I really did have a short time in there where there's a.

[A]

Little excitement and things were back on track.

[B]

Yeah. And I got back on track and really did a 180 and.

[A]

And then somebody comes along and yanks the rug out from you again.

[B]

Yeah. And because it was slow, you know, they kept just writing it off as malabsorption or. Or the way my digestion was working and, you know, you're just weak or you're having difficulty digesting and absorbing and different things. So my symptoms, they were just attributing to that.

[A]

Just nobody really knew. Right. What was really happening to you. Okay.

[B]

And it was slow. The shaky, the sweating, all the symptoms that come with lows. It was sporadic. And then towards the end of the before diagnosis, it was all day, every day. Seizures, passing out, you know, Horrible.

[A]

When did that start? What year?

[B]

So it. It started 2018, and it was almost six years until diagnosed.

[A]

Oh, my gosh.

[B]

Huh.

[A]

Hey, what did you do in a past life? You kill a bunch of kids or something? What. What do you.

[B]

What? No, actually, the first 20 years of my life, I was a preschool teacher.

[A]

Oh, my God.

[B]

It was early childhood.

[A]

Well, there you go, everybody. There's no karma and there's no. Yeah, yeah, yeah. So. Right. My. How about in your. Your extended family, do you have brothers and sisters?

[B]

Yes, I. I'm one of 19.

[A]

Holy hell. Wait, wait, wait, wait. Stop, stop, stop, stop, stop. I didn't know we were going to do this. Wait, you and your mom. Wait, you. You. Your mom and dad have 18. There are 18 other siblings, or your dad's been, like, banging all over the place. What's going on? Exactly.

[B]

So I have. I'm one of 11, and we're all blood from. From my birth parents. They both did divorce and remarry multiple times. And so there's step siblings, but 11 of us are blood siblings.

[A]

I just. This is not important to our story, but I just want to understand for myself, how long were they married? How long did it take them to make 11 babies?

[B]

20 years.

[A]

20 years. And then the pressure of having 20 children made them get divorced, do you think?

[B]

Well, yeah, there are multiple factors there.

[A]

But, yeah, I gotcha. So they. Man, they made it 20 years, made 11 kids. I gotta be honest with you. I go, 11 kids, 20 years. Even if you try to stab me in my sleep, I'm gonna be like, it's okay. She deserves to try to stab me. She's. She's been through a lot, you know? Yeah. And if I was your mom, I'd be like, he's the dick. But like, yeah, all the kids look the same. Why not hang a little longer? We're almost done.

[B]

Right.

[A]

But no. So they split up. They make. What is that? Not eight more kids between them.

[B]

And those other kids were from previous marriages.

[A]

Oh, okay.

[B]

Yeah.

[A]

A prolific group, though.

[B]

Yes.

[A]

Yep. Now, but this is good for my question, which is, of all those kids, do any of them suffer with any illnesses?

[B]

Not any autoimmune or anything like this.

[A]

Nothing like, I mean, people have been sick, but it's nothing where I've been sick for 10 years or anything like that.

[B]

Right.

[A]

So we're really thinking that maybe from a surgery or something unknown in you, you contracted a festering kind of infection that couldn't be cleared up.

[B]

Correct.

[A]

Okay. And then they basically strip mined you to get it out of there. That worked. You started, you felt better, you were on your way to feeling better, and then before you knew it, you started getting dizzy having these problems and spent six years passing out. Now, that's what I want to know about one. Once it hit hard and full, what was your life like before they understood what was happening to you? Why would you settle for changing your CGM every few weeks when you can have 365 days of reliable glucose data? Today's episode is sponsored by the Eversense365. It is the only CGM with a tiny sensor that lasts a full year. Sitting comfortably under your skin. With no more frequent sensor changes and essentially no compression lows for one year, you'll get your CGM data in real time on your phone, smartwatch, Android or iOS, even an Apple Watch. Predictive high and low alerts let you know where your glucose is headed before it gets there. So there's no surprises, just confidence. And you can instantly share that data with your healthcare provider or your family. You're going to get one year of reliable data without all those sensor changes. That's the Eversense 365. Gentle on your skin, strong for your life. One sensor a year. That gives you one less thing to worry about. Head now to eversensecgm.com juicebox to get started, 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 Mobi pump offer you unique opportunities to have better control. It's the only system with autobolus 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. Tandem Moby 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] check 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. Tandemdiabetes.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.

[B]

You know, until I got the diagnosis, I really just kept writing it off to, this is my new anatomy. This. They're telling me it's malabsorption, it's nutrition, it's dumping syndrome, it's. And I don't blame them. It's really hard because my labs, everything was terrific. And I was. After I had a surgery, I started boxing and that was my livelihood. Then I was just burning calories like crazy and fit and all that. And I just thought, okay, I'm feeling weak, I need to sit down, I need to step out. And just thought that was my new normal.

[A]

I'm sorry. Domino, you made a living boxing?

[B]

Yes.

[A]

Oh, my gosh. Tell me more, please.

[B]

I trained really hard and I'm actually a master boxing instructor and a master personal trainer.

[A]

No kidding. How about that? How do you make money with that? Is it like the roller derby?

[B]

So I'm an instructor, so I, I teach others how to defend themselves, how to just use their body, give them confidence, self defense. Women and teenage girls were my primary group and I did have some other groups with more elderly patients that were also Parkinson's patients. And boxing is phenomenal for that.

[A]

No kidding. How come?

[B]

Just the repetition and using those bodies, you know, using every part of your body, but also even just the voice.

[A]

Oh, no kidding.

[B]

And I. The most fascinating to me is the music. If they can do that to music that's familiar. It, I mean, it night and day.

[A]

That's really, that's really cool. Oh, so you found something you really liked. That's awesome. But then you're passing out and you just assume like, this is just how my body works now. I pass out sometimes.

[B]

Right.

[A]

Did doctors understand, did you understand at that point that it was from low blood sugar or did they not. They didn't have it even that figured out. No, that took six years.

[B]

It took six years.

[A]

Okay. Can you recall the moment when it got figured out and how they got to it?

[B]

Actually, yes. And I. Especially with my anniversary, hopefully I don't get too emotional, but bouncing around to doctor to doctor and, you know, I just was not getting anywhere. I knew, you know, that something was missing, something. I should not have to live like this.

[A]

Yeah.

[B]

So I found a new doctor, went to him and said, here's what's happening. I know my numbers. Great. I promise I'm not crazy. And he listened to and said, when are these things happening? When are you noticing these things? And did a little bit of journaling, went back in to see him, and he said, okay, here's what we're going to do. You're going to eat in your car. I'm going to have standing labs ready to go. Have your husband or somebody there with you. As soon as those symptoms come on, go straight in the lab, cut in line, and have him draw your blood.

[A]

Okay.

[B]

And I was in the 30s, and everybody was scrambling. We're gonna call an ambulance. And I'm like, nope, nope, nope.

[A]

Before you draw my blood.

[B]

Yeah, yeah. So, I mean, it was so quick. And they were like, oh, my gosh. So from there, it was a lot of testing and a lot of trial and error to get to the diagnosis.

[A]

No kidding. But that. That moment is where it started to go your way again, right?

[B]

Yeah.

[A]

But listen, when they. Geez, you're describing 16. How long ago was this, the diagnosis for the next part? A year ago, you're saying?

[B]

So it was about a year and a half ago.

[A]

About a year and a half ago.

[B]

Started seeing the endocrinologist.

[A]

Okay. Okay.

[B]

So.

[A]

And how old are you today? Did you say you were 50?

[B]

I'm 50. 50, yes.

[A]

So you're telling me that since you're 34, you've been struggling with health issues?

[B]

Probably better part of 20 years.

[A]

My God, what's that do to you?

[B]

Pisses you off?

[A]

Were you surly when you didn't even know you were? Do you know?

[B]

No, I don't think so. You know, the first 10 years before. The first 10 years with the infection, I was very deep in raising my children. I had my preschool at the open at that time, so I was still working and trying to hold everything together and just. I had a lot to live for, had a lot to fight for, so I just did it.

[A]

Pushed. Yeah. Hey. The kids came before the infection or during?

[B]

They were before.

[A]

Before.

[B]

So they were teenagers when that Happened.

[A]

I see. You said you may have had a medical procedure that led to it. Do you remember? Like, what was that? What could it have been?

[B]

Well, and that's the tricky thing. Did the infection start first, which led to a couple different surgeries, or was the infection post? We don't know, but had partial hysterectomy and then gallbladder removal.

[A]

Gallbladder removal. And you, you live in a fairly metropolitan area, is that right?

[B]

Oh, no, I do not.

[A]

You don't?

[B]

No. I was in Wyoming for a good part of this. We did just move a year and a half ago to Colorado because my doctors are here.

[A]

Ah. Tell people when you went in for your gallbladder surgery, they were working on a bison next door, is that correct?

[B]

Probably.

[A]

Probably.

[B]

Yeah. You know, and it's in the cafeteria when you're done.

[A]

You know, when you bump into your doctor at the gas station, he's like, I can look at you here. You know, you're rural. Then like, oh, just step behind the, the pump. We'll check it out real quick.

[B]

Get in the covered wagon. I'll just pull up my saw.

[A]

Was his name Doc Holliday? It wasn't something like that, was it?

[B]

No.

[A]

No. Okay, for those of you listening, I know Doc Holliday was not a doctor. Just please, I don't want to get a note about that. Okay. Wow. Gosh. When you're recanting it, how does it make you feel talking about it right now?

[B]

It was emotional this morning, just with it being the one year, I mean, I talking to my husband this morning. Just think, this time last year I was in an eight hour surgery. They were removing a feeding tube that I had been on for 412 days and woke up, no pancreas, most of my stomach gone, some of my intestines gone. And as a type 3C.

[A]

But if I'm wrong, you just stop me. Okay? Most people's onset of diabetes is a sad day where they get an illness. Yours was, was a happy day because you got rid of 16 or more years of struggling. You traded it for something else. But I don't want to put words in your mouth, but you're better off now than you were before, right?

[B]

I was hoping that would be the case.

[A]

Oh, no. So, yeah, there's Domino. Don't make me cry today. Okay. All right.

[B]

I'm trying to not be a bummer. I'm trying to be trying.

[A]

I'm trying not to be a bummer. But it is my story. I mean, we can stop in the Middle and tell a story about a clown, like in another 20 minutes or so, if that helps. But. But seriously, you were hoping it would be, but it wasn't.

[B]

There was no way around it. I talked in length with my doctor, you know, about the repercussions of. Do I just wait it out? Is this going to get any better? Is it eventually going to have to come out? Is my pancreas going to have to come out? And he said, yes, it's gonna have to come out.

[A]

It couldn't just ice cream. Ice cream. Scoop out a few cells or like. No.

[B]

Well. Well, actually, so January of last year, they did a partial removal of the pancreas. They removed the tail of pancreas. And that was not successful.

[A]

It fought back. It was like, yes. It's like, that's not going to stop us.

[B]

Yeah, yeah, yeah, yeah. It. It caught up. So, yeah, January of last year had the partial and then December was the total.

[A]

No kidding. Well, so you were probably pretty hopeful in the partial. Right. Like, we'll just take away some of its ability and this will even out. And then it just didn't. It didn't change at all after the partial.

[B]

Slowed down for just a brief bit, but it quickly cut it.

[A]

She's, you know, my biggest takeaway so far is the. The cruelty of it for you. Yeah, seriously, like an infection that they can't clear out for 10 years, that just seems silly in a modern age, you know, and then you're like, yeah, no, I was there, Scott. Thanks. It was. It was horrible. But, like, you know, that seems silly. Then the surgery that, you know, sparks off something that's, you know, described here as a rare medical condition, which means that it's so incredibly unlikely that this would be your outcome. And yet it is. And they do other things to try to help. Like, it feels like to me listening to your story and I don't know if this is how it feels to you, but I'm asking. It feels like you've been lifted up and dropped a lot of times. Does that make sense?

[B]

Absolutely.

[A]

That visual makes sense to you.

[B]

I use the boxing. You get knocked down and get back up. Knock down, back up.

[A]

But you started thinking you weren't going to get back up.

[B]

Absolutely.

[A]

Did I hear you say earlier you put your will in order and things.

[B]

I did with that infection. Towards the end, they were actually treating me for rheumatoid arthritis. Misdiagnosed with that. So a lot of the things they were doing to treat that was probably feeding that infection.

[A]

You were, you Had RA symptoms, but it was an infection.

[B]

I did have RA and symptoms, and they think it was just all the inflammation and I mean, toxic inside my body.

[A]

Elbows, knees, wrists, hands, like that, everything muscle.

[B]

I could send you pictures, and you had swelling. I was actually having blisters and rashes externally on my skin. I had to wear a full oxygen mask. I couldn't just do the cannula because it's. Any perfume smoke, anything.

[A]

Everything was good.

[B]

Yeah.

[A]

Because your body was so busy fighting off that infection, it didn't have the ability to do anything else, I guess.

[B]

No. Every foreign thing it was fighting. And I had to be super aware of germs and sickness because it would knock me out.

[A]

Do you lose time with your kids over this and your husband?

[B]

No. I unwisely probably pushed more than I should have, but I feel like I was present and.

[A]

No, I hear what you're saying.

[B]

Fought through a lot of pain and a lot of discomfort to make that a priority.

[A]

Hey, they clear up the infection. Do joints just get better?

[B]

Yes.

[A]

Okay.

[B]

There's damage with all that, though, that I'll never, ever. Which is one thing. I just loved boxing so much. I was able to get really strong and build my muscles to help carry the weight off my joints.

[A]

Yeah, I'll be. Damn. This is something. All right, let's shift gears for half a second, then we'll get back to it, because I'm gonna. I'm gonna jump out of this, and we'll jump back in to the pancreatectomy in a little bit. So tell people why I'm so awesome. Because you seem to know, and I don't know. I want to find out.

[B]

I do. And I probably will get emotional.

[A]

Really? Oh, this isn't even going to be fun. Okay. All right, hold on.

[B]

And I don't want to, like, bounce around too much, but. So a year ago, I had the pancreate technique. A month later, they quickly moved me to the pump. I'm on Omnipod 5. Thank goodness. My doctor was amazing, and I credit him for saving my life. But two days after I started my pump, my doctor had a stroke.

[A]

Oh, my goodness. Your endocrinologist?

[B]

Yes.

[A]

Jeez.

[B]

And he survived, but I didn't know this. I didn't know this, actually, probably till, like, three weeks ago. All of a sudden, he was not there. I was left with no doctor and two days on the pub not knowing what I was doing. Could not get in with any other doctors. I finally did get in with one, and I immediately knew this is Not a good fit.

[A]

Okay.

[B]

So it took till July 31, so from December to July 31 to get in with someone else. So.

[A]

So you had a pump, no doctor for six months.

[B]

Right. And they. There was hope that he was going to come back. Come back. So I kept kind of hanging in there, thinking I was going to get back in for an appointment, and it was not happening. And the seizures were bad. From hypos. Passing out again. Could not figure it out.

[A]

Oh, wait, Domino, you were passing out again. Now. From artificial insulin. From man made.

[B]

Yeah, well, just from low blood sugars. I do not struggle with high. I struggle with lows.

[A]

Okay. And so you're on a pump now. You're free of your rogue pancreas and. Oh, rogue pancreas. That's a good episode title. And you're. You're free of your rogue pancreas. You're using Omnipod 5, but you're still getting low.

[B]

Yes.

[A]

Okay. And you have no one to go talk to because your doctor had a stroke.

[B]

Right. I have no clue what I'm doing.

[A]

Hey, does anybody else in your sphere get sick? Is it possible? Are you doing this to them, is what I'm asking? Is it possible you have so much bad luck that it's soaking out of you and getting onto other people?

[B]

No, no, no. I might have stressed him out. That's. In fact, it's terrible to say, but I told my husband, oh, my God, I killed him.

[A]

Because he heard your story.

[B]

Stuff. I killed him.

[A]

He heard your story, and he was like, it's too much to handle.

[B]

Yeah.

[A]

Oh, my gosh. That's so. But you were left in the lurch. No, of course. No, I understand. Wow.

[B]

So I got desperate and said, I'm gonna start trying to figure this out. And I found you.

[A]

I'm laughing. I'm laughing because I'm like, yeah, desperate women. They're my bread and butter. There we go.

[B]

Yeah.

[A]

No, but. But without the joking. I do think that desperate people. I. I don't mean are my bread and. But I do think that's how you. I think that's how a reasonable person goes. I guess I'll turn on a podcast and listen to what they have to say.

[B]

Absolutely.

[A]

Yeah. You have to get to a situation where you're like, I have no other recourse now. Right. I have to try something because it's not a sensible thing for an adult to do.

[B]

Well, at that point, I thought, I'm gonna die if I do not figure this out. These seizures are killing me. I'M missing something and no one's helping me.

[A]

What were you missing?

[B]

You know, even during the diabetic education for the Omnipod and stuff before, I'm just so little information and so little trust, I think, in me being able to handle. And it was a lot. I mean, I went from having all of my nutrition just from feeding tube, so I had to not only learn to eat by mouth again, So I think they were just worried about overloading me.

[A]

Yeah.

[B]

Or. Yeah. Lack of being able to handle it. So, yeah, it was like I felt like do or die.

[A]

Yeah. And then, I mean, would you do. How did you find the podcast? Were you just like literally searching or did somebody put you in touch with it?

[B]

I just was googling. I was just trying to figure out, okay, Omnipod settings, diabetes, you know, just nutrition, just anything. I think I was plugging in so many things and juice box kept coming up. So I actually think I started in the Facebook group in May. I think I found you in May and was just reading along, but I needed a place I could ask questions too.

[A]

Okay.

[B]

And try to. Is there anybody out there?

[A]

Yeah, yeah, I'm lost. I don't know what to do. And yeah, I. Listen, I saw you first. I mean, this is, this is not uncommon. Right. But like every, I don't know, every couple of months, somebody's account sticks out to me more than others. And because there's so many, like, I, I mean, if you're all listening, I love you, but like, I don't know who, like more than like 30 of you are. And so at any one time but yours, your account just started popping up. You were just so exuberant about it. Like, you know, there's that even an automated post that goes up every time one hundred and fifty new people join the group. An automated post comes out saying, like, hey, welcome to the group. It lists all the people and it gives you some stuff to try. It's simple way to hopefully get some of the information to people and you're on every one of them. Like, hey, how are you? And I'm like, and you kind of came out of nowhere. And when I see that normally I think, oh, this must be a person that the content really helped because you're like exuberant about like trying for other people to find it. Am I reading that correctly?

[B]

Absolutely.

[A]

Okay. Okay.

[B]

And I really believe in what you're doing and I do not put my name on stuff. I don't even respond or interact if I don't believe in it.

[A]

So Your level of engagement based on who you are and how you purport yourself and handle yourself online. Like, this is uncommon for you to speak up like this?

[B]

Yes. Especially in community groups like that.

[A]

Okay. You're not completely comfortable with it.

[B]

You know, I just have to be really into it.

[A]

Sure.

[B]

And I guess this is a different level also. This is. Some of the other groups are just hobbies or entertainment.

[A]

Right, Right.

[B]

This is life.

[A]

It's hard. Hard to get excited about how you made a stuffed animal into a lamp. What?

[B]

I mean, right?

[A]

Yeah, right, Right. Like, I have a. I ain't going to waste time telling it to you. But this. This feels like. I. I see. It feels distasteful for me to say it, but, like, you feel like the podcast and the ecosystem around it saved you.

[B]

Absolutely.

[A]

Okay. And you want to make sure other people know that it's there.

[B]

Yes.

[A]

Thank you. I appreciate that.

[B]

And I just love your. Your thoughtful approach. It's so senseful, sensible, and balanced.

[A]

Thank you.

[B]

I truly. I just knew right away there was a good energy. And the more I've listened, I just really relate. Connect.

[A]

Can you hold on a second? I get my family up here. That's.

[B]

Sure.

[A]

I'll tell you, those. They don't listen at all. Like, look at me. Like, I'm half out of my mind. The other night, they were telling me I was doing something wrong. I was like, I don't even know what you're talking about. Well, I. First of all, I'm super happy that you found it and that it was helpful for you. That's why it's there. It's there. Hopefully, to find a person like you or somebody else that could use it.

[B]

Absolutely.

[A]

To know that you're intersecting with it the way that I intend it. That's special for me because I think there'd be, you know, if we had a. If we had a. I don't know, if we had somebody here who's known me for 30 years, they would say that. That explanation of me that you just gave, they'd be like, I don't know that person 20 years ago or 30 years ago. I wasn't like this forever. It just. I don't know. I started making the podcast because I thought. I thought, well, I have all this stuff we figured out I would like to tell somebody else about. I don't want people to struggle needlessly. And then it's obviously grown beyond anybody's expectations. And to hear you say this today, I mean, how many years removed from my first blog post almost 20 years. It makes me feel like that along the way, when there were bumps in the road where there were decisions to be made about direction, tone, content, whatever. I've made a million decisions between then and now. It makes me feel like I've made a lot of them. Well, maybe I'm sure not all of them, but, like, enough that it. It's still working and. And finding people like you, modern day is really exciting for me because four years ago, if you would have asked me, I would have said out. The podcast won't be here four years from now. Like, that's, like, that's silly. Like, a podcast won't last that long. And then to hear you talk about it really reminds me of something I did. I don't know, a couple of weeks ago. I don't know where the idea came from, but I put up an Instagram post. It was a review of the podcast from 2015 and a review of the podcast from 2025. And they're very taken very randomly. Like, I just picked them by the dates, and if you read them, they read the same. And that kind of consistency, I feel proud about that. You know what I mean?

[B]

Like, absolutely.

[A]

Yeah. The takeaway has modernized, but yet not changed for people's outcomes. We could sit here for three hours and try to philosophize about why that is. I don't know. I just. All I can tell you is that when decisions come in front of me, I. I generally pick ones that go well. And it's been my whole life. I don't even know why. It's, you know, everything really. Like, I started in a hole as a. As a broke person, and I still, like, every time I had an opportunity to make a decision, it usually led to something better. So I don't think it's a skill even. You know, I used to call it common sense, but it almost seems insulting. So, I don't know, I just have a knack for zigging and zagging the right way at the right time.

[B]

Well, it's terrific.

[A]

Thank you. I'm so happy for you.

[B]

I've found something valuable in every episode, and I've listened to a lot. I can't get them all in fast enough, but there's value in everyone. And I think. I mean, even kind of joking about come and tell my family about that. It just depends on what you're lacking. I think what you need, if. How much is writing about things, you know, that's filling a need, that is. For me, I mean, it was life or death. And I'm not being dramatic.

[A]

No, it doesn't sound like it. I don't listen. People don't. Don't willy nilly put their. But their affairs in order. That's not a. Yeah. That's not a decision you jump to lightly. And. And you've also been through, by my count, like, three serious medical situations. And, you know, each one of them didn't seem to have an answer.

[B]

Yeah.

[A]

And when they did have an answer, you know, what came next was not pleasant. But how do you describe where your life is right now? Now you're a year beyond that surgery. Found the podcast. You know how to take care of your insulin better now. Like, are you where you want to be?

[B]

I'm not where I want to be yet.

[A]

Okay.

[B]

I don't know if this is as good as it gets, but I would not, absolutely not be where I am now if I didn't start listening to the podcast.

[A]

What do you think is left to. To work on?

[B]

I don't know if there's a black and white answer with all the complications that I have. The variables are really tricky.

[A]

Domino, are you getting that echo again?

[B]

Not too bad.

[A]

No. Is it messing with you?

[B]

No.

[A]

No, you're okay. Okay. All right. I just wanted to make sure that you weren't.

[B]

Do we need to switch something?

[A]

I don't like? Part of me was like, should we. Should you drop out and jump back in? Because I didn't hear it before, but I was hearing it just now when you were talking. Okay, I'm sorry, I didn't.

[B]

No worries.

[A]

No, no, no, go ahead. I'm sorry. Do you know where you are?

[B]

I think the variables are what are hard for me with digestion, with just my whole anatomy. Physiology. There's just too many. Too many butts all the time.

[A]

Well, remind us again what your physiology is. You have what all has been taken out of there.

[B]

So no gallbladder, no uterus, which is kind of beside the point. Majority of my stomach is gone. The duodenum, which is the top part of the intestines, is gone. And also the pancreas.

[A]

Yeah. And they took that stuff just looking for infection to take out. Right.

[B]

They took more out also with the pancreas removal. Just as far as being able to cut and paste back where things would work.

[A]

Geez. So your body works so much more differently now that it makes the insulin usage more difficult.

[B]

Yes.

[A]

Yeah. What are your outcomes like right now? Only, by the way, only six months into finding the podcast and a year into having type 3C so, like. But where are you at? Are your. Is your variability more variable than you want it to be? Is your A1C higher or lower than you want it to be? What's your current situation?

[B]

My A1C is too low. It's 5.3. They would like to see that come up. And that's a false A1C in two parts. Just because of the significant lows and that A1C can be affected. I have macrocytosis, which is a fast turnover your red. Red blood cells. So then there's a younger red blood population and less glycation.

[A]

Yep.

[B]

So that can be false also.

[A]

So it. It's low, but it could be falsely low. But you're having a lot of extended blood sugar lows, so nobody really knows how to gauge what that number really means for you.

[B]

Right, yeah. And the frustration for me is which. Even the struggle with diagnosis, you know, my labs and numbers, everything looked good, even though it wasn't. And even now, you know, they're. You're 95% in range. You're. You know, this is great. This is great. But I think. No, you know, when I have two or three hours stretch in the night of a sticky low and seizures, and frequently. That's not.

[A]

How low?

[B]

Optimal?

[A]

Yeah, no, no, not at all. How low?

[B]

I regularly go below the 40 on my Dexcom, where it just drops low and with finger sticks I've seen in the 20s.

[A]

And your target on the Omnipod 5, do you keep it at 130?

[B]

I have multiple. They want that 71, 80. But I do have the 130. I have 90 to try to catch it. And that's the hard thing with the varying. Not only digestion, gastric emptying, but the absorption. I have very difficult time absorbing. And then also I'm having early kidney strain for malnutrition. So the kidneys are working a little bit harder to flush the insulin out of the body. So sometimes it stays longer. So there's a delayed hypoglycemia.

[A]

Oh, Domino, I'm sorry. So that's a lot. That's a lot to have to worry about and deal with over and over again. Is it controllable at all based on the foods you eat? Like, are there certain foods that you can use to make it work better for you, or is it variable no matter what you do?

[B]

It's variable. And that's. I just had my appointment two weeks ago. The malnutrition, malabsorption, the. I'm having some nerve effects and brain effects from the Seizures, I imagine.

[A]

So what are we going to do? Like, you're married still, right? That guy, he didn't take off.

[B]

Yes.

[A]

Because. Because you're a lot, Domino. So, like, I can see if, like, I'm a lot. I mean that in a very lovely way. Listen, maybe I don't. It's not about you. It's boys. You know what I mean?

[B]

Right.

[A]

So, good. You got a good guy. He's hanging with you. Like, what would. What would. Since we can't control the. The way the food goes through you. Like, what would stop these lows? Like, have you set up guardrails? Do you get up in the middle of the night and test? Is there anything you've tried that showing any promise? Can we enlist him in helping? What can we do?

[B]

He helps. The trouble is, sometimes they're just sticky lows. They take a long time to get up, and I don't know if the digestion is slower at that time.

[A]

And.

[B]

Yeah, just absorption, digestion.

[A]

What do you do for Lowe's when you get low? You drink a juice. You do. What do you do?

[B]

I've primarily been using glucose gel and glucose tabs just to get the most bang.

[A]

Yeah. In your mouth, right? Like trying to absorb through your cheeks. Okay.

[B]

Well. And a lot of times I'm losing consciousness and having seizures, so the gel is easiest for my husband to rub in the cheek.

[A]

There's no chance another organ's making insulin inside of that body somewhere, right?

[B]

No.

[A]

No. You don't have anything left to give away, but, I mean.

[B]

No.

[A]

Yeah. Okay.

[B]

Well, in a little side note, the glucose, we switched to that because there has been a couple times where I've gotten up and they, you know, have gummy bears or something trying to bring it up, and then I lose consciousness and we're both asleep, and I'll wake up with gummy bears in my mouth still, so.

[A]

At least you can laugh. Listen.

[B]

Well, I'm laughing because I told my husband, and he didn't think it was funny. And I said, you know, if I die in my sleep choking on gummy bears, please just say I died in a bear attack. Just give me some dignity. Please don't tell him.

[A]

Oh, Domino, I didn't.

[B]

Asphyxiated on gummy bears.

[A]

I didn't think you were gonna knock me off. Rogue pancreas. But then there, you did it. That was awesome.

[B]

I'm trying to be so behaved. I have the most inappropriate dark humor, and I swear, like a sailor.

[A]

No, you're fine. Please curse away. I already cursed Once. Rob's now listening. Also Rob, for 100% sure, we're calling this Bear attack. So keep that going. This episode was too good to cut anything out of, but too long to make. Make just one episode. So this is part one. Make sure you go find part two right now. It's going to be the next episode in your feed. The podcast you just enjoyed was sponsored by Tandem Diabetes Care. Learn more about Tandem's newest automated insulin delivery system, Tandem Moby with control IQ/[e-mail] Juicebox There are links in the show notes and links at juicebox podcast podcast.com Are you tired of getting a rash from your CGM adhesive? Give the Eversense 365 a try. Eversensecgm.com Juicebox beautiful silicone that they use. It changes every day, keeps it fresh. Not only that, you only have to change the sensor once a year. So I mean, that's better. Okay, well, here we are at the end of day the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app. Go to YouTube and follow me. Or Instagram TikTok. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't want to miss. Please you not know about the private group. You have to join the private group. As of this recording, it has 74,000 members. They're active, talking about diabetes. Whatever you need to know. There's a conversation happening in there right now and I'm there all the time. Tag me. I'll say hi. Hey, I'm dropping in to tell you about a small change being made to the Juice Cruise 2026 schedule. This adjustment was made by Celebrity Cruise Lines, not by me. Anyway, we're still going out on the Celebrity beyond cruise ship, which is awesome. Check out the walkthrough video@juicebox podcast.com JuiceCruise the ship is awesome. Still a seven night cruise. It still leaves out of Miami on June 21st. Actually, most of this is the same. We leave Miami June 21, head to CocoCay in the Bahamas, but then we're going to San Juan, Puerto rico instead of St. Thomas after that. Basteria. I think I'm saying that wrong. St. Kitts and Nevis. This place is Gorgeous. Google it. I mean, you're probably gonna have to go to my link to get the correct spelling because my pronunciation is so bad. But once you get the St. Kitts and you Google it, you're going to look and see a photo that says to you, oh, I want to go there. Come meet other people living with type 1 diabetes, from caregivers to children to adults. Last year we had 100 people on our cruise and it was fabulous. You can see pictures again at my link juicebox podcast.com juicecruise. You can see those pictures from last year there. The link also gives you an opportunity to register for the cruise or to contact Suzanne from Cruise Planners. She takes care of all the logistics. I'm just excited that I might see you there. It's a beautiful event for families for singles. A wonderful opportunity to meet people, swap stories, make friendships and. And learn. My Grand Rounds series was designed by listeners to tell doctors what they need. And it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all [e-mail] up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you@juicebox podcast.com. if you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Listen, truth be told, I'm like 20% smarter. When Rob edits me, he takes out all the, like, gaps of time. And when I go and stuff like that, and it just. I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired [e-mail].