#1621 Best of Juicebox: DKA on a Plane

Summary

Juicebox Podcast: Type 1 Diabetes

Episode #1621 Best of Juicebox: DKA on a Plane

Host: Scott Benner
Guest: Jennifer (“Jen”)
Date: September 6, 2025

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Episode Overview

This heart-stirring episode centers on Jennifer, an American expat living in Jordan, and the harrowing story of her daughter Nora’s type 1 diabetes (T1D) diagnosis while traveling internationally. Through candid conversation, Jen shares the unique challenges of raising a child with T1D overseas, the emotional impact of a traumatic diagnosis, and strategies for resilient, well-informed diabetes care. The host, Scott, and Jen also explore cultural differences in diabetes management, healthcare access, and the power of the diabetes community.

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Key Discussion Points and Insights

1. Life Before and After T1D Diagnosis

[02:15–03:21]

• Jen recounts that Nora was diagnosed at 3.5 years old; now almost 7.
• Reflects on the transition from overwhelming fear to confident, routine management:
  • “At one point it felt like we couldn’t get through the day… and then it didn’t. Then it’s just part of life.” (Jen, [02:51])
• The shift happens when understanding “why,” even prior to perfect glycemic outcomes.

2. Managing Blood Sugar in Changing Circumstances

[04:10–09:47]

• Jen describes life during lockdown in Jordan and new diabetes challenges due to restricted activity.
• Nora now needs more insulin due to decreased physical activity, but also experiences frequent lows following stress, excitement, or brief activity—especially after online schooling.
• They strategize about preemptively using snacks (like Skittles) to prevent post-school blood sugar drops.
  • “Maybe doing a snack a few minutes before school ends… Maybe that will be a good solution because it’s now regular enough that I know it’s coming.” (Jen, [09:23])

3. The Role of Stress and Routine in Blood Sugar Fluctuations

[09:47–11:13]

• Scott shares a story from another guest about stress-induced blood sugar highs during her husband’s surgery.
• Jen observes that the absence of normal school social interactions and movement led to increased insulin needs for Nora, as well as more erratic lows.

4. Life as Expats and Navigating Multiple Cultures

[11:22–16:31]

• Jen, originally from Pittsburgh and Washington state, left the U.S. at 18 to study in France. Married someone from Yemen, lived in Yemen, then Jordan.
• The value of a supportive, open-minded family is emphasized; Jen’s father encouraged her international path.
• Cultural adaptation, language learning, and life in Jordan are described with warmth and honesty.

5. Living Under Pandemic Restrictions in Jordan

[22:14–24:39]

• Jen outlines Jordan’s curfews (24-hour every Friday, nightly curfew), school closures, and family adjustments, highlighting their resourcefulness and sense of community.

6. Healthcare Access and Insurance Challenges Abroad

[26:05–30:30]

• In Jordan, insulin is accessible and affordable (~$25/vial, no prescription needed).
• Navigating dual healthcare systems: local care in Jordan, plus annual visits and prescriptions in the U.S. to access advanced technology.
  • “Things are available here… but I get that there’s a whole bunch of other things [in the US].” (Jen, [26:05])
• Private, globally-valid insurance is costly and complicated, often acting as travel insurance for coverage in both countries.

7. The DKA on a Plane Diagnosis Story

[38:01–49:53]

• The pivotal segment: Jen’s retelling of Nora’s acute onset of diabetic ketoacidosis (DKA) during a long-haul flight from Jordan to America with a 5-week-old infant and a 3.5-year-old.
  (see detailed timeline below)
• Notable Quote:
  • Scott: “This is the most, like, viscerally disturbing diagnosis story anybody’s ever told. Like, I’m vibrating.” ([42:57])
• Kindness of strangers shines (“the lady on the plane just held my baby for five hours…”), as does the resilience of Jen and her family.

Diagnosis Timeline:

• Strange symptoms begin in Jordan, attributed to “jealousy of new baby” by local doctor.
• During the flight (London to Phoenix), Nora becomes unresponsive and vomits; a pediatric doctor on the plane recognizes seriousness but information is withheld to maintain calm.
• Plane makes emergency landing in Canada; Nora is unconscious on arrival, recovers after 12 hours in hospital.
• Language and medical confusion, lack of supplies, and isolation from family compound the trauma.

8. Recovery, Cultural Contrasts, and Ongoing Management

[49:55–54:44]

• After stabilization, they travel onward to the U.S. (Phoenix) with a “food exchange chart” from Canada, navigate different care philosophies across Canada, U.S., and Jordan.
• Adapting to three different medical management styles in quick succession is challenging:
  • “If I was…diagnosed in one place, they gave us one set of information, and then…I was just time warped somewhere else…That seems impossible to me.” (Scott, [54:08])
• Emphasizes the flexibility needed in managing T1D across diverse healthcare systems.

9. The Importance of Evolving Knowledge and Support

[54:44–65:04]

• Jen describes the overwhelming amount of (sometimes contradictory) information given by various providers, and her own challenges in questioning authority/adjusting advice.
• Discusses the potency of peer-shared resources and the need for up-to-date, fluid management approaches.
• Emotional burden and the slow transition from “just surviving” to proactive management (“it took me a long time to be okay with thinking about it”).

10. Empowering Independence in a Young Child

[71:51–73:49]

• Nora, 6, is now practicing diabetes self-management—using a smartwatch, responding to texts, tracking carbs, and even doing basic calculations for bolusing.
  • “She’s so proud…She’ll give herself insulin, juice…or check her finger.” (Jen, [71:51])
• Strategies for gradually teaching carb counting (“how many carbs in a quesadilla?” game), independence vs. safety, and role of technology (texting between parent and child).

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Notable Quotes & Memorable Moments

On the moment of diagnosis and the ordeal:

• “Nora went into DKA somewhere between London and Phoenix over a huge body of water.” (Jen, [39:24])
• “The head of Phoenix Children’s Hospital was on the airplane… They’re like, I think it might be time for us to land the plane early.” (Jen, [40:00])
• “This is the most, like, viscerally disturbing diagnosis story anybody’s ever told. Like, I’m vibrating.” (Scott, [42:57])
• “Kindness of people that day… The people I find the kindest are the ones that don’t know anything about diabetes and are just like, can I give you a hug or bring you a sandwich?” (Jen, [48:53])

On resilience, adaptability, and learning

• “At one point it felt like we couldn’t get through the day… and then it didn’t. Then it’s just part of life.” (Jen, [02:51])
• “You trust that what you know is going to happen is going to happen, and then those things that you expect…begin to be your outcomes.” (Scott, [71:11])
• “Wherever you are right now, someone’s telling you this is how you do it. And that’s not necessarily true. There are a lot of ways people do it.” (Scott, [51:08])

On independence:

• “She’s so proud…She’ll give herself insulin, juice or Skittles or whatever she needs at the moment or check her finger.” (Jen, [71:51])
• “I think you’re using one of the most important diabetes parenting tools that exists…texting.” (Scott, [75:12])

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Important Timestamps

| Timestamp | Topic/Quote | |-------------|-----------------------------------------------------------------------------------------| | 02:15 | Jen’s family introduction, life abroad, Nora’s age/diagnosis | | 04:33 | Covid lockdown, impact on activity and blood sugar | | 09:23 | Preemptive snacking strategies for post-school lows | | 13:27 | The impact of family support and cultural adaptation | | 22:14 | Jordan’s pandemic restrictions, adaptation as a family | | 26:05 | Access to insulin, dual healthcare navigation | | 38:01–49:53 | “DKA on a Plane”: full diagnosis story | | 49:55 | Relearning diabetes care across Canada, America, Jordan | | 54:44 | The difficulty of inconsistent information and building confidence | | 62:20 | The challenge of questioning authority, value of fluidity in management | | 71:51 | Nora’s growing independence, teaching carb counting | | 75:12 | The vital role of technology (texting) in helping young T1Ds build autonomy |

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Tone & Style

The episode balances humor, warmth, candor, and moments of deep emotion. Scott’s empathy and self-deprecating wit blend seamlessly with Jen’s earnestness and resilience. Together, they illuminate not just the hardships of T1D but also the unexpected kindness and strength that can arise from crisis.

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Main Takeaways for Listeners

• T1D management is rarely “one size fits all” and often demands adapting to shifting medical, cultural, and emotional contexts.
• Parents/caregivers can move from overwhelm to confidence by seeking understanding, community, and evolving management approaches.
• Building a child’s independence is both possible and powerful, even from a very young age, especially with the aid of technology.
• The diabetes community offers invaluable support, both in sharing practical solutions and in moments of crisis or vulnerability.
• Healthcare systems vary greatly, and access to insulin/technology—while easier in some countries—still depends on advocacy and adaptability.
• Even in the darkest scenarios (like DKA on a plane), humanity’s capacity for kindness and resilience can shine through.

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For new families or individuals living with T1D, this episode is an emotional but ultimately uplifting testament to perseverance, adaptability, and hope.

Transcript

[A]

Hello, friends, and welcome to episode 478 of the Juice Box Podcast. On today's episode, I'll be speaking with Jennifer. She's the mom of a child with type 1 diabetes living overseas. I guess overseas, if you live here. If you live there, then I'm over. That's not the point. They don't live in America. And the diagnosis story that she's going to share with us about her child is, in fact the most harrowing that I've ever heard. And that's saying something. I think you're going to enjoy this episode. The conversation is terrific. She's terrific. Great conversation. But my goodness. Wait, wait, wait. Are you here? While you're listening, please remember that nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Please always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Real quick. If you're looking for the Diabetes Pro Tip series, they're [e-mail] where they begin at episode 210, right there in your podcast player. And if you're listening to Podcast Player, please, please follow and subscribe. This episode of the Juicebox podcast is sponsored by the Dexcom G6 continuous glucose monitor and by the Omnipod tubeless Insulin pump. You can find out if you're eligible for a free 30 day trial of the Omnipod-@ omnipod.com Juicebox and to get started with the Dexcom G6 or to learn more, you're going to want to go to dexcom.com juicebox and when you're finished with all that, head over to touchedbytype1.org and see what they're up to. They're also on Facebook and Instagram. Links to these and all of the sponsors are available right there in the show notes of your podcast player and@juicebox.

[B]

Podcast.Com hi, my name is Jen. I am the mom of two girls. One is three and one is six. And Nora is the one who has type one diabetes.

[A]

And how old is Nora?

[B]

She's six.

[A]

She's the six. Okay.

[B]

Yeah, well, she'll be seven here in a few months, so, gosh, I don't know where time goes.

[A]

Tell me when she was diagnosed.

[B]

She was diagnosed when she was three and a half. So we've been doing this for almost three years now.

[A]

Isn't it funny you've been doing it for like two and a half years? You know, like three years, five, ten. Feels like a while now.

[B]

I know, right? Like at one point it Felt like we couldn't get through the day. Like, it was just. It took forever to understand, and then it didn't. Then it's just now it's part of life.

[A]

When did that happen? The changeover between. This is untenable to. It's part of my life.

[B]

Probably when we got good at it. And by good, I mean we understood what was happening. So we didn't always like the results, but, like, we understood why it was happening, what was going on.

[A]

Isn't that an interesting distinction?

[B]

Yeah, it is. It's a big distinction because I don't freak out when she's high and I know why, or she's low and I know why. Whereas before it was. I don't know. I feel like there's a lot of common phrases like, well, you know, it's diabetes and what can you do? And I felt that way. I was totally there in the beginning and through much of the very beginning of it. And now. Yeah, there might be moments I'm like, wow, I wonder what this could be. And eventually I'll be able to figure it out. I might not know in the moment, but. But I'll know eventually. It was a growth. Oh, she's getting sick. Oh, she did have a few extra skittles at school today that I didn't know about or whatever.

[A]

You know, I think it gets exciting when you look at the. You have a Dexcom G6 and you're using Tandem pump. Is that right?

[B]

Correct.

[A]

Have you noticed that?

[B]

Yes, that's right.

[A]

I'm excited when I look down at the CGM and I look at the line, and in a split second, my. My brain goes, oh, that pump site's going bad. And I actually know what that looks like.

[B]

I'm getting there. Yeah. This is. I don't know. I feel like I was there a while ago and this whole lockdown. We are actually in Amman, Jordan, and so we've had some pretty strict lockdowns over here. And the inactivity has been shockingly difficult for us to see her. See her change. Her activity level changes, and her blood sugar just kind of revolts against sitting and not going outside as much.

[A]

So she needs more insulin, I'm guessing, for the sedentary lifestyle.

[B]

Yeah, she does. But she also then has a lot more weird lows. So that the minute she does something that's exciting, and at this point, even online learning is exciting. Well, I mean, it's great. Like, she's in first grade, they're doing some fantastic stuff. The minute she stops doing whatever is exciting, whether it's seeing a friend for a few minutes or being online. Then she just drops. Like, she just drops. Her body just stops. And so she's having some weird lows lately too. So in addition to some highs, because of the extra insulin she's needed, she's having lots of drops that we hadn't.

[A]

Seen in quite some time, I would expect. And guess that you're using so much extra, probably basil and maybe even boluses for that inactivity, because our body's not exercising and not moving and not using the insulin more efficiently that it's. I wonder how to put it into a picture, I guess. But to me, it's the difference between football in the 40s and football today. Meaning if you. If you look at offensive linemen, this is going to be a strange thing, but do you watch football at all or have I lost you already?

[B]

No, no, you got me in here.

[A]

Okay. So. So offensive linemen back in the day were just these big doughy guys who stood up and were a wall of life and they just kind of stood there and you couldn't get around them. And now everyone's such an athlete, right? Like, they're. They're carved down to like, bone and muscle and they're, you know, they're. They do things now that are absolutely crazy. And I think of that sort of similarly, meaning that when you're very sedentary and kind of doughy and slow, you just need this ton of insulin to hold down your blood sugar. This just big lazy, like, flop, like a weighted blanket on top of you of insulin. But when you start moving, everything starts being more efficient. And now suddenly your body doesn't need all of that insulin that's in there. And then you. You slam down low and. Is that.

[B]

I totally. Yeah, I get that. Except for. I'm talking about, like, because we were able to go outside, we're not totally locked down except for one day a week here. We're physically able to go outside for most of the time. So we can go ride our bikes, we can go for walks. She has these dance videos on TV she likes to do to keep active inside. But I'm talking about when she's at school from 9 to 2:30 online with very little. Like there are breaks and things and it's first grade, so there's a little bit of activity, but not much when the school day ends or her activity ends. So, like, she's done with her work and she has maybe an hour break, she'll drop for that break.

[A]

Wow. Stress, anxiety.

[B]

Yeah. And that's what I think it is. That's what, like, I'm coming to the realization that this is because we've only been doing two weeks, three weeks of online learning. And I'm watching it and it's, It's. We were lucky. We were doing well here for the longest time. So she was in school last year. It closed down a little bit, and then she was. She started school end of August, and she had been in school until a few weeks, weeks ago.

[A]

Then I want to amend my. My answer slightly, meaning maybe it's not as much about the activity as is it about the, the whirl of life and like the stress and anxiety of listening and paying attention, of focusing or just maybe doing something she's not completely comfortable with. So she's got more of a. Maybe an adrenaline or an anxiety high that you're fighting with insulin. And then all of a sudden when that goes away, that would make sense why it drops even more quickly. Because that just like adrenaline split second. It's interesting.

[B]

It is. But it's hard to predict when it's going to happen because it's not something that I'm watching. I can't, like, I can't know if she's going to write her assignment in 20 minutes or an hour. And so when she says she's done, I know it because I see her blood sugar at this point.

[A]

I know you're done because I'm running around the house looking for juice.

[B]

Yeah, exactly. No, no, no. We've actually have a diabetes drawer in her at home desk which has Skittles right there. I'm like, go for it. You know what you need?

[A]

I wonder if you don't choose a number of Skittles and try one day as soon as school ends, she pops the Skittles in her mouth and see what happens.

[B]

That's what I think we're gonna go to. We've talked about maybe doing a snack a few minutes before school ends. Like maybe 15, 20 minutes before school ends. She just has. Has a little snack and we'll see. Maybe, maybe that will be a good solution because it's. It's now regular enough that I know it's coming. I just don't. I don't quite know how to place it yet. But we're gonna try a few things to see if we can sort that out.

[A]

I have an interview coming up this weekend that'll be out with a concert cellist. Her name's Alyssa Wilerstein, and she told me a Story while we were talking about her husband getting surgery and how her blood sugar just shot up the entire time he was in surgery and would not come down no matter how much insulin she gave herself until she knew he was okay. See that?

[B]

Yeah. Stress is hard. And it's fascinating. Cause I can see it. I was shocked when back to school because they were back, but with masks and with plexiglass in between the kids and very much sitting down. And I finally. I was there, and I sat in class with them for maybe the third day or fourth day, because I'm like, something's different this year. She's needing more insulin and it's not working. So we've changed her pump. We've done a whole bunch of things. And I looked, and they don't have the socialness, they don't have the moving. They don't have the interactions that cause you to move during the day. And I hadn't thought about that.

[A]

Insulin more efficiently. Yeah. No, it's. It happens to, I think everyone almost. And it's. Whether or not you see it or not, whether you can step back and. And see the causality. And it's cool that you did. It's just. And you'll figure it out. It really is.

[B]

Yeah. Yeah.

[A]

You know, it's more insulin and then finding a better way of stopping below before it happens, you know?

[B]

Yeah. And that's where we are. That we started. A few different choices, and they're not quite there yet. We've got a little bit more tweaking to do, but I have no doubt we will get there.

[A]

Cool.

[B]

We always have. So we'll keep plugging away.

[A]

So we have to figure a couple of things out here. One is, you seem to live, but you have a pretty. You have a pretty white lady name, but you live somewhere else. So I'm trying to figure out.

[B]

It's true. I was born in Pittsburgh, Pennsylvania, and I haven't lived in America, really, since I was 18.

[A]

I have to tell you, had you told me you were born in Pittsburgh, I wouldn't have asked if you knew what football was. That's for sure.

[B]

Yeah, Right. Yeah. No, I was born in the 80s in Pittsburgh. So, yes, I know what football is. My parents have made sure of that.

[A]

How do you leave the country at 18? Are you running from the law? Quickly, Jennifer. That's all I need to know.

[B]

Thankfully. No. No. You know those career days at school and somebody comes in and talks to you about it. And this guy said he just up and left at 18, and he went to study in Grenoble in France, and he loved his life of traveling. And I came home and I told my dad I had my acceptance letter ready to go into UW in Washington State. And he's like, well, you could do that. And it really caused me to pause. I'm like, yeah, maybe I could. So I found a university, and I went to university in France and tried to come back for a little bit of time to America after that, and it didn't work. We're lots of years later, and I'm still abroad.

[A]

So. Do you speak French fluently from that experience?

[B]

At one point it was good, but that was a long time ago. I graduated in 2004, and yes, I speak enough to get by on a vacation whenever we could travel again. I wouldn't call it fluent anymore. There just has been so little practice. And we're working on another language now since we're in the Middle East. So Arabic is tricky.

[A]

So a couple of things. First of all, your dad seems like a special guy to say that so freely, you know, because I've had those moments where Arden's like. She's like, do you think I could go and go to France and study fashion? And we're like, yeah, of course. But what you mean is, no, please stay here. But you don't say it, you know.

[B]

Right. I mean, I don't think I fully realized that, what he said, how hard that must have been until I had kids. And I'm like, wow, like, you want the best for them. But, man, that. That was a. That was a big thing he said. And. And I don't know if he intended it to hit me so profoundly. Um, but it did.

[A]

Imagine, he. He just walks into to the other room and says to your mom, she just saw the dad, and I just did out there. I told her, of course you can go to France. She'll never go. It's no big deal. But you don't realize growing up in Pittsburgh make you want to get out of Pittsburgh sometimes too, so. Or just wherever you grow up, you know, like, you're in a place and it seems small.

[B]

It's true. Yeah. I was only in Pittsburgh for a few months, and then I grew up in Washington State.

[A]

No kidding.

[B]

But, yeah, I mean, and it's not that I loved where I grew up. I loved. You know, the hardest part, obviously, is being so far away from my family, but I absolutely love it. I love being abroad. I love my family. I love that we've. The life we've created and all these Random, but not random places. And I don't know.

[A]

It's cool. Where'd you meet your husband?

[B]

In Paris.

[A]

Okay. But he wasn't from France either.

[B]

No, no. That was the one thing my grandma said. She's like, don't go to France and meet a French guy and move to France. But no, he's actually from Yemen. So when we got married, I moved to Yemen.

[A]

Your grandmother should have more specifically said, don't go to France, meet a guy from Yemen and move to Jordan.

[B]

Well. Right. I know. It's tr. Nobody could have predicted any of the crazyness that had happened once I got my acceptance into France to university there.

[A]

But, yeah, that's really something. Okay. How long have you guys been together?

[B]

I'm. I was in Paris when we were in Paris, 2002 to 2005.

[A]

Okay, so you've been married. You were married a good bit before. You had children then too?

[B]

Well, yeah, he worked for a while, and I actually decided that I wanted to live in America and work, and that was the direction we were going. So I went back to America and I got a job and I loved it, and it was fantastic. And then decided to get my master's degree and Better opportunity to go abroad than that. So I went to the University of Edinburgh in Scotland for my master's, and I haven't been back to America since, except for vacations. We decided to get married as soon as I graduated, and that's when I moved to Yemen.

[A]

Wow. So, Jen, you have wanderlust.

[B]

I do, don't I?

[A]

No kidding.

[B]

This lockdown without traveling is driving me bonkers.

[A]

Well, that's what I was going to get to. Is that so are you in a spacious palace over there? So it's not so bad. I started having this thought yesterday. I live in what I think would be a. A fairly modest home in America. And I have had a mattress that my. We bought. We got my mom a mattress. She didn't like it, and I didn't have the heart to just toss it. I couldn't find anybody who wanted it. I drove the mattress from my mom to my house. I'm storing it here. And two weekends ago, I say to myself, we don't have the space for this mattress. I'm going to have to toss this mattress in the garbage. No one will take it. And as I do that, my brother says, hey, I could use that mattress for my daughter. I was like, oh, that's great. So my brother had moved recently, and I hadn't been to his place yet. I Took him the mattress yesterday, and I got there and thought, oh, my gosh, his place is so much smaller than mine. And then I noticed that he. And, you know, his. Well, he's not married, but his partner, they're both working in a room together. There's two computers set up, and I'm like, oh, boy. Like, I wonder how long that, like, forget my brother. Like, how long is that going to work for anybody? You know?

[B]

Right. It's true. We. We set Nora up, we got our desk and put it in my office. And. And there are times I'm like, why? Like, we all need space. And we did. Thankfully, we have enough space to kind of have everybody do their own. Their own thing most of the time. But we're missing the outdoors for sure. Yeah, we have.

[A]

So I. I found myself complaining that we were all in separate rooms doing something, and now I feel lucky that we have separate rooms.

[B]

Yeah.

[A]

And. But tell me about the. The protocols that you're living under. How do they. Because you said one day a week you can. Like, how does it all work there? You know what? You need peace of mind. You need comfort. You need a little respite. What can offer that to you? Well, in my opinion, the data that comes back from the Dexcom G6 continuous glucose monitor. Now, why is that? Well, if you're using insulin, if you have type 1 or type 2 diabetes, or you love someone who does, being able to see the speed and direction and number of that person's blood sugar is invaluable. Let me tell you a little more. My daughter had a breakfast this morning, and we missed a little bit on it. You know what I mean? Like, it's been a couple of hours now, and her blood sugar still 135. And I've been able to see over the last 45 minutes that there's just no more impact from the insulin that we used. So we very comfortably gave her more to move this 135 number somewhere where we're more comfortable. It wasn't just 135, by the way. It was 135 and steady, stable, not falling or dropping. The Dexcom showed me that. It showed me how long it had been stable. And then you get confidence from that information. You think, all right, this really is some stability. This looks like where we're. Where we're at now, 135. I'm going to do something about it now. Without the Dexcom, I might be thinking, I don't know, this still could go down, or maybe it's gonna, I don't know, like, I'm gonna wait and see, but I don't do a lot of waiting and seeing. Since we found Dexcom, I'm seeing my daughter's blood sugar on my iPhone. You could also see it on yours or your Android phone. And you can share that data with up to 10 followers of your choosing. Check it out. Dexcom.com juicebox Sometimes you want to do something but you just can't bring yourself to make a change. I understand that and so does Omnipod. That's why they're offering some of you a free no obligation trial of the Omnipod dash that lasts for 30 days. A 30 day free trial. You may be eligible. Head over right now to find out. Omnipod.com forward/juicebox. Can you imagine? Well, of course you can. You mean 30 days. You know how long that is? Anyway, you get this, this little, what are we going to call it? Trial, right? And you give it a whirl. 30 days is enough time to decide. I like this, I don't like this. Let me find out. You know how I feel. No pressure. Maybe just like, I don't want it and that's okay. Or maybe you do want it and that's great. Now you know, choice is what you should have. Choice is what Omnipod wants you to have. And they want you to be able to make a decision without a lot of pressure or that feeling like, oh, I don't want to make this big decision and then not like it. What if I do? What if I don't like. You shouldn't have to feel like that. Just head over to omnipod.com juicebox and see if you're eligible for the free 30 day trial of the Omnipod Dash. That's the way to get started. If you're not looking for a big 30 day trial, Omnipod also offers a free no obligation demo. It's just one non functioning pod that you can actually wear just to see how you feel about it. There's a lot of options over there@ omnipod.com for juicebox and I would like it very much if you went and took advantage of them. Don't forget while you're out on the Internet getting your Omnipod, getting your Dexcom that you should be checking out touchedbytype1.org and finding them on Instagram and Facebook. They're a great organization, doing wonderful things for people with type 1 diabetes. And all they've asked me to tell you is that they'd like it for you to know that and for you to check them [e-mail].

[B]

They put in some restrictions and they started a while ago and then they were lifted because we were doing great. Like people were concerned here when there were 20 cases a day. And it was nothing like compared to the world and to what I saw with my family in America or even anywhere else. And so the restrictions all got lifted and then as of not that long ago, the cases just started going up. So they've started to put some new restrictions in. So they closed down schools for a while. It was fourth grade and above and then kindergarten through third grade, I think, and 12th grade were allowed to be on campus. And then. And that went on for I think a few weeks. And then I want to say two weeks ago now or three weeks ago now, they shut down all of the schools. Nurseries are allowed to stay open, but schools are closed down. And then I think at that point is when they decided that Friday, our weekends here are Friday, Saturday. So Friday there's a 24 hour curfew, essentially. So there's a curfew in the night every night. I can't remember exactly what. I'm not a night person, so it doesn't matter.

[A]

It doesn't matter to me.

[B]

Yeah. Either 11 or 12 o' clock at night. It's not like I'm gonna go sit in a cafe right now anyways with everything else going on. But 11 or 12 at night to 6am There's a curfew. And then every Friday for 24 hours there's a curfew. So that means you're not allowed to leave your property.

[A]

Gotcha. Wow.

[B]

And we have an apartment, so you're.

[A]

Not leaving an apartment.

[B]

Well, we're not. Like we can go run around in the garage and do some bubbles on the roof, but we're not gonna go for a walk. We're not gonna do anything else like that.

[A]

Is it working? Are numbers going the other way?

[B]

For a while it was. And now things are going a little. We're about between 2000 and 2500 cases a day, I think. And 30ish deaths, which I get is still good compared to a lot of different countries. But for the majority of the time it was a bad day if there were 50 cases and no deaths.

[A]

Right. And now there are thousands.

[B]

Yeah. So there's been a significant change. And I know that they're doing what they can to try to sort it all out while not completely destroying the economy. And I applaud them for that, for all the governments, honestly, because there's just so much balance that has to be happening right now with everybody wanting different things.

[A]

Was your daughter. Were both your daughters born in Jordan?

[B]

No. Sonora was born when we were living in Yemen, but we didn't have her in Yemen. We went back to America for that. And then Dalia, the three year old, was born here.

[A]

What are their first languages?

[B]

English.

[A]

Okay.

[B]

English.

[A]

So you guys. You guys.

[B]

But they're learning Arabic. Yeah, yeah. No, my husband. If you were to have him, like, just talk right now to you, he. You would not guess that he had an accent from a country.

[A]

Okay.

[B]

I mean, he can put it on, obviously, and he will sound like he has an accent if he tries. But I wouldn't have assumed that he grew up outside of America if I hadn't asked him.

[A]

So you guys are learning the language because you're. Because you feel like you're gonna stay and that they're gonna grow up there?

[B]

Yeah. Well, and it's their family, too. Like, he's. It's. It's half of them. Who they are is an Arabic speaking people, so they. They need. That's how they would communicate me, obviously. His family's fantastic. And they. They all know English, so they. They talk far too much English to us to learn our Arabic very well. But that's. It's lovely because then we. The girls don't. Aren't isolated because of a language, so they. They're learning.

[A]

We're all learning. How is it. How does the healthcare system work there? What's the process?

[B]

It's pretty great. Well, if you're comparing it to America, it's fantastic. We're lucky to be here. Coming from Yemen, we have access to things, which is so important, especially for Nora. Now we don't have to worry about getting the technology or whatever else. So insulin here is equates to about $25 a vial. You don't need insurance, you don't need a prescription. You just go in and say what you need. I need Nova Rapid. And they give you. How many do you need? Do you want some ice with that? It's literally like that simple. It takes me back. Like, it's a huge culture shock going to America when we're there for the summer or for a holiday or whatever. And they're like, well, your prescription hasn't been renewed yet, or you have to call this. And I'm like, oh, yeah, I forgot. Like, you have to prove that you still have diabetes. Like, it's not going away. Like, why do you have to keep proving it? But I get that there's a whole bunch of other things, why you have to do that. But things are available here. Obviously, you can have test strips. You can have, like, good meters. There's Dexcom and Medtronic are both here. Obviously. We, you know that we're on a tandem and we have chosen to do that because we love the fact that you can just upgrade with an online update.

[A]

Yeah.

[B]

So that you don't have to be anywhere, particularly in the world. You just have to have the prescription from the doctor. Sonora does have two endocrinologists. She has the one here that we see when we're here, who is fantastic. Pretty hands off. But there when we need her in a pinch, there when we have any questions. And then a doctor in America that we see once a year and we get our prescription so that we can maintain the technology that we like. Because while there is Dexcom here, they're on G4 and G5, actually. Although I know. I think they just said that they're phasing up the G4 finally. And Medtronic is also one generation behind. I think they've got the 6, 6 40. It's even different from what it's 640 or 630. I know there's a little bit different because it's the European version.

[A]

Wow, that's interesting that you can kind of balance those two worlds and end up getting what you need out of it.

[B]

Yeah. Like, I gotta tell you, like, I have a phone with an American SIM card that's on all the time in addition to my Jordanian SIM card. And I get random calls at the middle of the night. Excuse me, it's time for you to reorder this. And I'm like, oh, yeah, I forgot. This is the night I need to. I need to be up and do my American insurance or ordering or whatever it is. And so, yeah, I mean, we're doing this because it's the best care for Nora, and we're lucky to be able to do that and to have the ability to maneuver between the two worlds. But.

[A]

Does healthcare. Does healthcare funnel through employment there? Or does everyone have it and there's a certain amount you pay? How does that part work?

[B]

There would be healthcare for everybody here if you were Jordanian. But because we are not, we have private insurance now because we are American living in a Middle Eastern country or for that matter, Europe. Like, they kind of all bundle together. A lot of the times if you're trying to get everything together, Our insurance is strange. It's very complicated and it turns out to be more like travel insurance for me and the girls. Because we want to include America and because we need that bit. We're there, we go to visit my family in the summer. Because we need that bit in America. If the girls were to break their leg or like in Nora's case, God forbid, we have to ground a plane because somebody's diagnosed with this new disease. We need it to cover us kind of everywhere. So we renew it every year and hope it keeps on going. At this point, it's my April stress every year just to make sure that it continues. Because I know that we can't necessarily be covered as what we want worldwide if we get it strictly from America and they will not cover us from over here. And if we try to get it through a company, then it's like ridiculously expensive.

[A]

Wow, that's a lot. So it must be great living there if you guys are willing to do all that. You must really love it.

[B]

No, no. There's huge trade offs. Like we love living here where we're thankful to be in a place because my husband still does go back and forth for his job in Yemen. So we tried being in America and the 12 hour time zone change or the 10 or whatever it is when you have daylight savings time to the east, to the west coast is really hard. It's too far away. So we're happy to be here in a place that has welcomed us and it's. I can't speak highly enough about Jordan.

[A]

That's amazing. So you basically can't live in America for one of the reasons because your husband can't work then because the time shift is too different.

[B]

Well, no, he, he, he goes to Yemen, so he still travels for six weeks, two months at a time and he'll go work in Yemen and then. So if we want to talk to him at all or if we want to see him or the kids, I mean, I can stay awake and figure things out. But the. Obviously with a 12 hour time zone change, it is really hard in America to get those talks meaningful. And if there's too much traveling involved to try to get like it's a three hour flight from here to there. So it's possible to do. I wouldn't say simply, especially right now, but it's possible to do much less complicated.

[A]

I see. I do understand that. I'm just trying to imagine now your kids at like three in the morning, like you're holding the phone in front of their face. Like, say hi to Daddy.

[B]

And they're like, yeah, I'm assuming it'd be a lot, like, if we could ignore juice in the middle of the night where she's got, like, half an eye open and she looks at me like, what do you think you're doing? And then she rolls over and she's like, yeah, I'll see you later, Mom.

[A]

Yeah, I stopped asking many years ago. Do you remember having a juice last night that doesn't. Nobody remembers.

[B]

No, no. The only, like, the only time I know she remembers is if it was particularly a bad night and she has to go to the bathroom, because then she'll wake up, she'll go to the bathroom, she'll come and be like, mom, did we have a lot of juice tonight? Yeah, sorry, it's bad night, honey.

[A]

That's hilarious. It's funny. Arden only has to pee overnight if her blood sugar is high, not if it's been low. I guess she. She must have a tank somewhere. She puts that juice in so well.

[B]

And like I said, it doesn't happen much, but if we completely do something wrong, it was a new food or whatever, and she's just low for an extended period of time. It actually sometimes will take her quite a bit of juice to come up. So. And I just think she. She just goes to bathroom a lot.

[A]

Listen, I'm one of those people, if I'm up, I might as well go. I just figure, you know, what the heck, maybe she's in the same part feeling.

[B]

Makes sense to me.

[A]

Yeah, no kidding, right? You're already in that direction. Well, how did you find. Like, how did you locate the podcast? And has it helped you at all?

[B]

So, yes, it has helped me a lot. So Nora was diagnosed in a very strange way, but the way back to here, where we lived permanently in Jordan, it took us some time to get here. And then the rules for food and the rules for diagnosing or not diagnosing, but for managing. Because we were in three countries before we finally got back here. We were in Canada, we were in America, we were here. And they all had different versions of how they should be handled. And nobody was willing to kind of walk us through the huge details, although they were all very kind and very, you know, generous with what they wanted. But they're like, but you need to find what works for you wherever you're going to be, with whatever technology or things you can have. So we didn't have a fantastically solid start to diabetes. And then. Okay, so then. And we. And we were Doing fine. Ish. We kind of got through for about a year, and then we had to renew the insurance. And they. They denied Nora. They said her A1C was too high and it was unreasonable for them to try to. It wasn't an American company, and it was something else that we were trying to do. And. And I was like, but our doctors say she's doing well. Like, she had a 7ish. Seven and a half ish. A 1C. It wasn't awful.

[A]

So the insurance company used her a 1C to try to deny insurance.

[B]

Yeah. And to be honest, like, it took me a long time to be okay. Like, I feel like her diagnosis was really hard on me. It was a really. It took me a long time to be okay with thinking about it, with everything. So I just kind of. We got by for a long time, and our doctors were saying that we were doing okay, that there were things we could do better. And then she was denied insurance. And I was like, no. Like, yeah, okay, we can manage here. We can. We can spend 25 JD. Because at that point, I think she was using, like, half a vial or she was on a pen at that point. So we were using, like, half a pen a month. Like, there was no insulin being used in such a tiny little body. But I'm like, but the doctor's saying we're okay, so why is this person not saying we're okay? And somehow it clicked at that point that there might be more I could do for some reason I hadn't thought, like, the doctors were just saying, keep going, you're doing fine. And as they do, and they're very supportive and everything. So then we. Then I started looking, and I found. I found sugar surfing, actually. And I was like, well, this is interesting. We had never thought about some of the concepts of managing a little bit more fluidly or concepts like giving insulin before the kid eats and then making it up if something goes wrong with the young kid who suddenly doesn't want to finish their spaghetti or whatever. And so it got me thinking. And at that point, that's when we kind of dropped into the fives for her. A1C. And we've been that way now for a year and a half or two years. And. But I still feel like. I still feel like. And this was maybe five, four months ago. Five months ago in the beginning of the. When she first came home from. So last March, she was going low a lot. And at that point, I realized that we were masking perhaps a lot of what was happening at school. With whatever was happening, like, just like it was life. We just kept kind of pushing through, and there was a lot of room for improvement. So while she had a pretty good standard deviation, she was low a lot more than I was comfortable with. And I think the juice was causing some other issues with her, maybe with her eating or with some other stuff. Like, she was just full because she was being bumped a lot. And so I. Then I started looking. I'm like, okay, so there's got to be maybe some more information out there that I'm missing. And that's when I found the podcast and started trying to figure out what we can do to. To bring. To bring down her lows. Like, not bring down, but, you know, like, reduce the amount of lows that she's having, the amount of. Essentially, what I cared about was making sure that she wasn't having too much juice or Skittles.

[A]

Yeah. Looking for more stability. Jen, you have been on a. What's the time frame for that? How long did all that take? Which, like everything you just said. Was it a year of your life to get from A to B? Was it two years? How long did that, like, Lenora was.

[B]

Diagnosed five weeks after Dalia was born.

[A]

Okay, okay, hold on, hold on, hold on. Slow down. There we go. So five weeks after your second daughter's born, your first daughter's diagnosed because you said it was hard on you, and you were. It sounds like you were struggling. Can we talk about that for a minute? Like, the struggle you had.

[B]

Yeah. Yeah.

[A]

Cool.

[B]

So we. We come every summer. We. Ever since we moved abroad. That was kind of our deal that we would still spend the summers with my family because, you know, we miss them. And that. That gives us a good chunk of time to be in America. I can go. Is it my grandma or my sister? Whoever. So we were on our way to America with a five week old baby. And. Here, let me, like, rewind a minute, because we did go to a doctor here. We did notice that Nora was acting strange, like she was drinking a little bit more. She had an accident here or there despite being potty trained, and the doctor here said she was fine. Like, that she was jealous of the new baby. And so we're like, well, my God, I'm tired. Like, she's a doctor. She's certified in America. Like, she must know what she's talking about. And we'll get through this and we'll go do our annual checkup in America with the doctor there. And so Omar put us on a plane, and I was by myself with the two girls. And Nora went into DKA somewhere between London and Phoenix over a huge body of water.

[A]

Oh, my God.

[B]

And she was. We knew she wasn't feeling fantastic, but I just figured it was maybe nerves or I don't know if we.

[A]

Sure.

[B]

There's a lot going on. And so we just kind of. We kind of were like, nora, just push through. On the other end is grandma, grandpa. We'll just take a nap on the airplane and watch some cool movies. And she's like, yeah, sure, Mom. And then, I don't know, two or three hours after. This is a 10 hour flight after takeoff, she just stopped responding. Kind of. She. Yeah, she just kind of. It didn't look okay. And she threw up a couple times on the airplane. And we were lucky, actually. The head of Phoenix Children's Hospital was on the airplane with us, and he came over and he checked her, and nobody was telling me actually what was going on, but they're like. So I think it might be time for us to land the plane early. And the first place we can land the plane is in Canada. And I think it's about two hours away. We're too far to go back, and we're not there yet. So hold tight, and we're gonna get as fast as we can to Canada, to the first place we can land. And so we did. We landed in Canada. And I don't even remember the name of the city anymore. There were several things that I blocked out because literally, it was like, me and my two girls on this airplane ready to go to Phoenix. And, like, we are in our T shirts, and it's 100 degrees in Phoenix. And they're like, okay, so we have a couple things we need to tell you. First of all, it's literally freezing outside, and you guys are in T shirts. So here's some blankets here. Like, we're going to wrap you guys in these until you can get into the hospital. Although I don't remember being cold, but I know brand new baby. Like, that wasn't brilliant. And then second of all, you have to have a car seat for your second kid for the baby. Like, we're in Canada. You can't just hold her in the ambulance when we land and we can't find your car seat. So I need you to tell me whether you want to go in the ambulance with Nora or you want to wait here with Dalia till we find her car seat. And I was like, wow.

[A]

Like, that's what that movie's about, you know?

[B]

Yeah, right. Who makes that choice? And I mean, thankfully they did fight it. And. And then we made to the hospital in this. This small town. And I mean, we got there and they looked at me and they're like, so do you have diabetes in the family? And I'm like, oh, what's going on? Like, what's going on? And she told me, like, she told me that Nora has type one. And I'm like, is she gonna be okay? And she's like, I hope so.

[A]

Was she unconscious at that point?

[B]

She was unconscious at that point, and it took her about 12 hours to regain consciousness. And so then once she was conscious, I knew that would be fine. But we were in this teeny, tiny hospital, I don't know, on the edge of Canada is the best I can describe it, because, I mean, it was beautiful, flat, blue sky, snow on the ground. But we were inside, like for two or. Because the first little bit we were there and just trying to make sure that Nora could pull through. And she's a fighter, so we're. She's always been a fighter, so she did.

[A]

Can I tell you, this is the. And I mean this. I don't mean this poorly, but this is the most, like, viscerally disturbing diagnosis story anybody's ever told. Like, I'm vibrating. And I now understand why I love submarine movies so much. And I just did an interview with somebody last week who was diagnosed during a heroin bender. And so I'm just like, oh, my God. Yeah, make sure you listen to that one, by the way. Absolutely fantastic. But, but, but seriously, the. It's the. I mean, not that this is any stretch for anyone listening, but it's the being on the plane thing over the ocean and understanding what DKA is. I'm like, oh, my God, that kid could have just died on that plane. That's insane.

[B]

Yeah. Well. And then, yeah, there was a lot of things that I learned afterward that I'm very happy I didn't know before because like I said, there really isn't type one in my family. Although my great uncle, so my grandma's brother, did have type one, but we didn't talk about it. And it never came to my mind at the time. And there is thyroid, so I get how it could happen, but it's not close enough that I would have ever put signs together. And having the doctor tell us that, she's just like, I didn't think much of it. I was just kind of bracing myself for this. This huge kind of 24 hour plane travel with these two small girls. And I don't know, it took me a long time to get over the parts that were hard because you can choose. I mean, because then there was a snowstorm and we couldn't leave a small hospital because we had to be airlifted to the big hospital, but because we're coming from a foreign country, we'd be quarantined for MERS or SARS or something. I don't remember at the time. And then once we got to the big hospital, that's when my dad could finally get there. So I was two or three days alone with these. These two girls. One hooked up to every possible tube and the other one mostly peacefully asleep, thank God, with lots of lovely, lovely people who would just kind of do whatever for her.

[A]

Do you. So do you think that this situate, by the way, your episode is going to be called DK on a Plane Case? You want?

[B]

Good to know.

[A]

Yeah, yeah, yeah. Because. And I'm just seeing Sam Jackson running around looking for insulin and there's snakes falling everywhere. This is how it's going to go.

[B]

No, but the thing is, on the plane, nobody told me I could not get out of them. I'm like, so, what is happening? And he's like, I'm not prepared to say anything quite yet. And I think it was probably to maintain my sanity before we got on the plane, but I did not know that this is what they were thinking, that anybody had a good idea what was going on.

[A]

The doctor.

[B]

So I.

[A]

Children's Hospital didn't ask anybody for a meter. You didn't see them test their blood sugar or nothing like that?

[B]

No, no, he did. He did. And I didn't put it together.

[A]

Oh, okay.

[B]

And it was a meter from the uk, and so her blood sugar appeared low, but he didn't know it was from the uk and he's American. So there was some juice given. Like, it was. It was really like. Now I look back at it, and there was some things that was just. It was really hard all around.

[A]

Wow. Wow. That's all crazy. Jesus. I swear to you, I. I've heard 500 people tell me how they or their children have gotten diabetes, that those initial things. And I am no lie. I've never felt so stressed out in my entire life while somebody was telling me that. I've never felt like what people would consider triggered nowadays by any story that's been told to me on this podcast. But I started, like, I got nervous and. And warm while you were talking about it, and my chest got tight. I was like, oh, Jesus. And I knew the kid was okay, by the way.

[B]

Yeah, right. I mean, you know, we're here. We're here talking about diabetes, so. Yeah, she did pull through, like. But. But. But, like, it's taken me a long time to get here to want to talk about it.

[A]

Well, that's. That's what I was going to ask you next. Is that. That. That scenario, that situation, those few days had to. I'll just bleep this out. That had to. You up pretty good, right?

[B]

Yeah, it did.

[A]

Okay.

[B]

It did really well. And then we got, you know, and then we got to him. Like, I can remember the phone call that. When we finally landed the plane and my phone turned on and I had reception. Like, my God, I gotta call Omar and say, he just put us on a plane, but we're five hours early. Sorry, my husband. And tell him that we're actually in Canada and our daughter is on an ambulance and I've got no idea why. And then I had to call my mom and say, you know, sorry, mom, we're actually still in Canada. Like, I don't know what else to tell you. So. Yeah, like. But then I think back and, like, I. Like, I don't know how. I must have given my phone number out at some point. But, like, there was this one lady on the plane that just told Dalia for like, five hours, she's like, no, no, no, you have a lot going on. Like, I'll just hold your baby so that she doesn't cry. And she did. And the guy next to me, he's like, well, I can get your bags off in London or in Phoenix, and like, I'll call your mom and we'll, like, sort out whatever you need. Like, if you need. If you can't get. Whatever. And obviously, for security reasons, I had everything with me, but, like, I don't know, a pilot called later just to make sure that she was fine, that everything was ended up okay, and, I don't know, just the kindness of people that day. Like, so I'm trying to hold on to.

[A]

Well, now I realize I'm going to cry. Jesus, this is. I thought we were having a nice conversation for the first 25 minutes. Geez.

[B]

Yeah. And we were. We were. We still are. Because, honestly, I don't. No, no, no. If I could, I'd pass you a tissue.

[A]

I have them here. Don't worry. I'm used to this.

[B]

Oh, good. Okay. Excellent. So I'm not the first one to make you cry?

[A]

No, no, I cry once in a while. While I'm doing the. I just don't usually say it, but now you got me. The pilot called, the lady's holding the baby. Doctor misunderstood the meter.

[B]

Yeah. Like, the one thing that I think. Yeah, there's, like, there's not many things. Times I'm going to say that diabetes has helped our life. It has added lots of extra stuff to us, but the community of people that we have because of it. And it started on that day with all these people just being kind, nobody having any idea what was going on, but they were just like, I'm here. What can I do? And they just kind of did it with love. And. And from that day forward, I mean, the people that I find the kindest are the ones that don't know anything about diabetes and are just like, can I give you a hug or bring you a sandwich? It looks like you may not have eaten or slept or. I don't know. I love that about this. That's the part I love about diabetes, is the community of people that have kind of band together to help each other figure it all out.

[A]

I have to agree with that. That's for certain. Oh, geez. Okay. All right. I don't want to hear any more diagnosis. I want to move forward.

[B]

No, seriously, the good news is, like, she made it. After six or seven days in Canada, my dad was there for most of the time, so he just had a ball with Dalia. They checked into a hotel, and God knows what they did, but they were having a good time. And then we made it to Phoenix, and we started to figure it out, but because of the situation, then I showed up to Phoenix with my. They gave me an exchange chart for food in Canada. And so I was like, okay. So I whip out this chart in the hospital, and I'm like, so we were told that we're allowed to have one bread that can be exchanged for one whatever at breakfast and this. And so there had been a few times of relearning stuff. So it's just been. It's been a challenge because there are a lot of ways one can deal with diabetes, some obviously better than others, but everybody has their own style. And so it's just been a weird journey of going through, trying to learn everybody's style because you, obviously, you're in a new place. You want to see how they do it, what they can do, and then trying to make it work for you. And so, I mean, thankfully, there's a lot of information out there.

[A]

Well, I think that one of the things that your episode is Going to really, I hope, drill into people's heads. And it's thanks to your wanderlust, by the way. Is that seriously, because you've been in so many different places and that actually happened during your daughter's diagnosis, is that wherever you are right now, someone's telling you this is how you do it. And that's not necessarily true. There are a lot of ways people do it. There are a lot of different considerations that people give. You know, not everybody gets a chart with a Tim Hortons on it that tells you to have a Tim Hortons take away two breads, you know, like that.

[B]

Yeah, no, it's true. Like, it was. It was exactly that.

[A]

Yeah. And, And, And. And not everybody. I mean, I'm still. You have to understand that when I started this podcast, I. I didn't. I knew what pre bolusing was. I did it for years upon years. And so I still get notes to this day from new people who are just. Their minds are boggled by the idea of using the insulin in a timed fashion.

[B]

I mean, it took us a year or so to even come to that. It never dawned on me in the beginning because, I mean, to be honest, Nora was a picky eater when she was younger. She's better now, but I couldn't count on anything. But that doesn't mean you couldn't have worked it out some way. I hear of lots of people dealing with that in ways where you kind of break it up or you extend or something like that, if you have a pump or whatever. But. But to tell you the truth, I was like, I didn't look for information for a long time. There was a lot of adjustment of trying to get to America and then see my parents and be like, okay, so mom and dad. Turns out our summer of fun still will be fun, but there's gonna be a little more to do. And then doing that again when we came back to Jordan at the end of the summer and finally seeing Omar and be like, okay, so here is. Here we are, and we have a lot of new ways of doing things, but then also, then organizing that with. With what's available here in Jordan. So. So taking what we could from America, but then also realizing it had to be tweaked a little bit once we got here.

[A]

And so he didn't see her for months after she was diagnosed?

[B]

No, he hasn't been able to get a visa for America for a while.

[A]

That's amazing. Oh, I'm sorry.

[B]

So the choice was because we had big talks about this Whether we just kind of pick up, we see my parents for maybe a week or so and then pick up and come back and all catch up and figure this out together, or I spend the summer as planned, see my parents figure it out in America, and then come back here. And we decided to make that choice. It'd be less traumatic for the girls to not pull them away from what they were expecting. Well, Nora, at that point, Dahlia didn't remember much, obviously, so we decided to stay. And I can't imagine him making that choice. It was a completely selfless choice on his part.

[A]

Wow. No, that's really something. I'm. I'm. And I'm still trying to wrap my head around. If I was. If Arden was diagnosed in one place, they gave us one set of information, and then I was just time warped somewhere else to another place where they talked about it differently. And just as I was probably beginning to not even understand, but at least get some semblance of, like, normalcy about it. But I go to a different place where a third set of people talk about it a different way as well. And then you try to meld all that together while you don't know what you're talking about. That seems impossible to me.

[B]

It was, which is why I think we coasted for. For a while. Like, we were just, like, we were getting by with all of the. Like, I can't. Well, you must know, obviously, like, this just. Diabetes is so much to process. And then when you're told different ways to process it, like, it's just. There was a wall plus. Plus, there was just so much else going on. We're just grateful to all be together, to be healthy and together. And so we kind of did what we could to keep what was normal. Because I think the one thing, the only thing that was common in those three locations was, but don't worry, you can do everything you want to do. You can have a normal life. You can eat what you want. You can grow up to be whatever you want. You can be happy or healthy. You can be sad or unhappy, but it will all be your choice. You just have to kind of go through it. And I love that message. Like, I love it. That is one of the first messages that people tell you, but there's no real assistance in getting there. Like, you just kind of have to keep trying.

[A]

Yeah, I hate that the idea is espoused without the supporting information, meaning no one will tell you that. They'll just say, like, oh, this is your basal insulin. Your basal insulin's Job is to keep your blood sugar stable away from food. Food. Okay, great. And then they say, and this is how much basal insulin you get. It's X amount of units a day if you're injecting. Or they'll set you up on a pump and go, okay, it's 0.35 an hour. This is it. No one ever mentions that that might be wrong, or that it might not be enough or too much, or that if the basil's not right, then the boluses won't work, or that we may have set your carb ratio to a classic diet, but you're going to go eat a carb heavier diet or you're going to have more simple sug. And that's all insane. It just really is. It's the idea of, I don't know, just teaching someone to drive a car and telling you push that one down to go and you push that one down to stop. And there's really a little more to it than there's some nuance in there. And the nuance gets lost, as it does, by the way, in everything in life when it's being explained or disseminated usually. But nobody even says, hey, listen, this basil is going. They'll say it may change once in a while, but they won't say it's going to change. Be aware of that. The first time you see blood sugars that are too high for too long could be the end of your honeymoon. And I get that it's a lot of information, but it seems like important information to me.

[B]

Well, the thing I wish that people would talk about, and this obviously is worldwide, is so this is what's going on right now, but tomorrow may be very different. I know you will have no idea what to do tomorrow, but call me and then keep learning. Here's some resources, like it doesn't even matter. Like if you want to start with like an old fashioned book or a fold out of like, you know, carb exchanges, I don't care whatever information you want to give them. But if the idea that what I left with the hospital was going to pick a hospital, it doesn't matter because it all felt the same. That that was, that was law, that was right. And whatever was happening was something else or, you know, it's diabetes and it's just, it's really hard. So there's going to be some roller coasters and that's sad. I find the idea of the fixedness of diabetes, especially in this age where you can have the technology to sort things out A lot faster. You have test strips that you can use. You have devices, Dexcom. You have all the CGMs and the pumps that can help you figure out what you need to do to extend insulin or to watch your blood sugar to catch things that you would never have been able to catch before with that technology. There should be a disclosure saying there's a lot of new things going to be coming your way. It's not just ideas about food, but it's technology. It's your kid's body as they grow or change through this disease, but also through life. If you could tell anybody something important, you should say that, yes, your kid can do anything, but everything that they do is going to cause a change in their body and just watch out for it.

[A]

And I find the bigger issue around that is that they'll tell you, oh, today might not be like tomorrow, might not be like the next day. And that somehow gets distilled down and translated into diabetes. You never know what's going to happen, so just ride it out. Instead of the idea that, you know, today there was more stress or less activity, or you ate this food instead of that food, 10 carbs, this isn't going to impact you the way 10 carbs that does. There's so much in there that's easy to understand if you hear it. But instead, they give you this magical idea that, oh, there's nothing you can do about this. It's just going to happen and you're going to have to let it happen. And once someone tells you that, that especially in a life where, until then medication has likely meant to you two of these every six hours, one of these every morning. You know what I mean? And then that's it. You don't think about it again. When you see an algorithm Jen manipulate insulin and you see it take it away and give it back and add more and bring it away, when you see that happen, you realize that a static basal rate and a static idea of how to give insulin for foods is archaic at this point.

[B]

Well, it totally is. Like, I'm going to tell you, like, it was shocking. We came back here and we saw a doctor, not our current doctor in Jordan, but a different one. And this was after Canada, the first place that didn't give us a fixed. Fixed anything. They were just telling us what to dose. Like, I would call them and say, okay, we're going to eat this for lunch. And they'd give me insulin because they knew I was traveling, so they were just helping me to get to the next place. And then America, there was nothing fixed either. It was, eat what you want and then do it on this. I think it was a sliding scale or a ratio. I can't remember how it was in the beginning, because things have changed a million times. We got here, and he's like, so based on her weight, she'll have this much basil, which is her heaviest meal of the day. Okay, so she'll have one unit for breakfast, she can have only this. At lunch, she'll have two units, and at dinner she'll have one unit, because lunch is the heavy meal here, and that's that. And I'm like. I looked at him and I'm like, but we've been doing it differently, and that seems like a really rigid lifestyle. Why. Why do we have. Why do we have to do that for such a young kid? And there was no answer. And there were lots of tears once we left that doctor's office, because that just. That seemed really, really wrong to have to take away the freedom of all that. But, yeah, when you have all that, when you have all the technology, there should be. There should be freedom of choice. There should be. But with that responsibility, like, there's no way a pancreas does nothing. Like, it doesn't just sit on its back. Because I know at the beginning, when we started doing all these things, Anura was actually doing really well with, like, her time and range, and things were. Things were going better. You could see she was feeling better. Omara looked at me and he's like, well, this is. This is a lot of work. Isn't this too much work for you, for us? Because the brunt of it falls on me because he travels so much that I've kind of taken on the scope of diabetes. And then when he's here, he kind of. If things have changed, he kind of relearns where. Where. Where things have changed. And then he jumps back in. And I'm like, well, I mean, your pancreas doesn't stop, and my pancreas doesn't stop, and, yeah, it's a lot of work, but, like, she's healthy, right?

[A]

I. You know, as you're talking, I realize I must be a fool, because this all seems so obvious to me. And I'm. I've been in the past kind of thrown off by the fact that it wasn't obvious to other people. And now I realize maybe it's. Maybe it's just not obvious. I. I just. It. It was obvious to me at some point that this needed some sort of a fluid Management style, but I might really be in the. In the minority still around the world.

[B]

Well, yeah, I just think that if there's. There's a lot of training that goes into small kids worldwide, that if an authority figure tells you something, that it's the right thing. Like, not in a bad way, like they're not purposely trying to mislead you, but if your doctor says this is what you need very much, like when Nora's diagnosed or any of the first doctors, that this is the right amount of insulin, and maybe it was at one point the right amount of insulin, and then she just. She changed and she needed more or less or whatever. I had a hard time questioning that now. My head wasn't exactly in a place where I could take on a huge new challenge for a while, and that was understanding what was going on and actually diving into and figuring out glycemic index or any of the things about macros or whatever else. And it's taken me a long time to get there, but. But I was in a place where I think I was looking for the answer to be. Like what they tell you in the beginning. Carbs. You figure them out. You give the insulin, you do the math, right, with whatever the doctors say, and that gives you the answer. You circle it, and you turn it into the teacher. I was at a place where I wanted that to be the answer, and obviously it's not. I get that. I understand that. And so you combine the fact that maybe you have parents and caregivers that are having a hard time with it, with doctors that have done this for ages. This is the way it was done. Before you had ways to watch graphs, before you had ways to figure anything else out. I mean, it's a hard change to make. It's taken me a long time to make it and a lot of work.

[A]

Would it have been easier in hindsight? In hindsight, if I'm not trying to pump up the podcast just as an example, like, in hindsight, if somebody would have left the hospital with you and said, look, this is going to take you a couple of months, but every day I want you to listen to an episode of this, and two months from now, you'll be done, do you think you would have skipped over a lot of that turmoil?

[B]

I don't know. I hope so. I would like to think I would, because then I probably would have had a project to focus on as opposed to. Of memories. Because. Because I left. I left with this wonderful goodie bag of ladies who knit like a quilt for Nora. And, like, these. These Christmas lights that this lady gave Nora because Nora liked Christmas. Like, I don't know, like, I left for these memories and these. These. These kindness and this gesture, and I got stuck there for a really long time. And so I wasn't. I wasn't ready to. I think, personally, I wasn't ready to move on for the challenge part of diabetes. Call it what you will, and it might have been some version of denial, I guess, but I don't know. At the same time, I really didn't think to look somewhere else in my mind. There was no way that if a doctor said, do this, and they said that her results are within range of what is. What is right according to the pediatric diabetic. Whatever. Whatever the things are. Yeah. The guidelines, if it was in that range, like, yes, I'm the type of person that would like to strive to do better, but I wasn't in a place to do so. So I don't know. I don't know how I would have. I don't know. I would like to think that I would have. I would like to have. Think that if somebody gave me a book earlier that was a little bit more current rather than dated.

[A]

Did Nora just feel sick to you? Like, did you think, I have a sick kid and she'll be sick forever?

[B]

No. Oh, you mean, like, on the airplane?

[A]

No, no. I mean, in general. Like, once you're home and you don't have any real knowledge of what you're doing, do you just have that, like, underlying feeling like, oh, I have a child who's going to have maladies and struggle?

[B]

No.

[A]

No, it didn't feel like that.

[B]

Nora is something else. She is bold and she's spirited and she's creative, and, like, I don't know, nothing holds her back. Like, she just. She goes. And the whole summer, like, I would look at her and I'd be like, wow, how did you just go through that? And I just went through that, and I looked like a train ran over me. And you're, like, jumping in the pool with Barbie. Like, I don't understand. Like, I want that.

[A]

So it all seemed. It still seemed very possible. You weren't, like, you weren't in a.

[B]

It totally did. And that's. And that's part of the reason why, like, why I think I got through. Because if this doesn't affect her, like, this is her body, this is going to be her life forever. I shouldn't project the way I feel about my experience of that same event onto you so that you have taken on my experience. Because if you don't have that experience, I don't want you to have it. I wouldn't want anybody to have that, but especially her.

[A]

You're a smart lady, Jen. You were able to figure through all that while you were still like somebody. Felt like you scrambled your brain, I would imagine.

[B]

Well, like I said, the only thing I want out of all of this is her to do whatever she wants in life. I don't care what it is. If she decides that she wants to move to Paris and paint the Eiffel Tower every day and that makes her happy and she's able to do it by all means. If she wants to become a doctor and, you know, solve all the world's problems also fine with me, like, but I don't want to be the reason for stopping her. And at that point in time, it felt like my emotions about all of this could easily have been turned into to hers.

[A]

Right? Well, yeah, I do think it's important not to project because you're having a completely different experience than your kids.

[B]

Well, like, for the longest time, she had one of those, you know, baby pouches with the blueberries and apples or whatever. And the last thing I think she remembers on the airplane was throwing that up and there was blueberry pouch all over the towel, the blanket that they gave her. And it was nasty. And for the longest time, if anybody asked her, yes, I have type 1 diabetes, blueberry pouch gave it to me. I mean, she was three. She was three and a half. She was trying her best to figure it out, but it took me a very long time to convince her that she did not get diabetes from eating this particular pouch on this plane ride.

[A]

Oh, yeah, that's cute and understandable, by the way. I, for a very long time thought KFC made my appendix explode. I didn't really, but it was like I was driving home one day, trying to rush home for the kids. Middle of the day, I was out doing something. You know how us moms are. We're running around all day doing stuff. So I'm out doing something. I'm driving home, trying to be on time for the kids to get home from school. I'm viciously hungry. I whipped through a drive through and I grabbed just chicken, like little chicken pieces, and I'm throwing them in as I'm driving. And then four or five hours later, I'm calling an ambulance. And I couldn't. I mean, not that I am a KFC person to begin with, but if you get me anywhere near it, I'm like, oh, no, no, no, no, no. That made one of my body parts explode, and I have, like, a very visceral reaction to it.

[B]

It. I'm assuming that's exactly the same as she felt. No, I think we moved on from that because Dalia had a pouch the other day, and Nora asked for one, and with no comment about blueberries, gave me diabetes. She's gonna give you diabetes or something. Yeah, exactly. So I think we moved on, but, yeah, it was a long time before she understood that it wasn't that.

[A]

Yeah. Jen, is there anything that we haven't talked about that you wanted to? Because this was very emotional. I need to get away from you.

[B]

I get it. It's a lot. Like I said, it's taken me a long time to get here. No.

[A]

You feel better now? Things are smooth? You understand what you're doing?

[B]

More or less. Yeah. We have our moments, but, yeah, we know what we're doing, and we know it's going to change. And we're okay. We're together. We're happy. That's what matters more than almost anything else.

[A]

Well, you said something in the very beginning that I find to be pivotal, which is, you know, you trust that what you know is going to happen is going to happen, and then those things that you expect to happen begin to be your outcomes, and then you feel like, ooh, I did that on purpose. This is. This is good. I made a decision about insulin, and what I thought was going to happen, happen. That's good. Now, if it. If it. If it later doesn't happen that way, you can at least say to yourself, I know this wasn't me. So what are the other influences here that it could have been? It opens up your abilities to diagnose on the go. I think it sounds like you're at that.

[B]

Yeah, we are. We are. We're doing well. We're in the process of. She's so. She's so proud. She's trying to do it herself. So she's got a watch now, and she's getting text messages from me or from Omar, and she'll give herself insulin, and she'll give herself juice or Skittles or whatever she needs at the moment or check her finger. And so she's in the process of trying to figure out how many carbs are in things. So we had. I think it was quesadillas or something the other day, and she looked at me, and she's, like, looking at the plate. So, mom, this looks like 400 carbs and I'm like, okay, now we have our next project to work on. So now we're trying to transfer. Transfer the information from me, because Lord knows there's not 400 carbs in quesadilla.

[A]

As long as her pump has that little. That safety thing where it can't give her too much insulin.

[B]

Oh, God. It does. It does. But. But I see her trying, so. So there have been a few, you know, missed boluses and a few missed things because she's trying to figure out how to do it, and she wants to. The minute she doesn't want to, we'll pull back. But she's at home, and I think this is kind of a fun challenge for her to get out. So she's got her calculator now, and she's trying to. I'll give her the carb counts in certain things, and she'll kind of add them together and put that in there and then check it with me. So it's been a fun. It's a fun new phase. It's gonna be challenging.

[A]

I know, but the way I did it with Arden is. And I still do it, is we put a plate out or whatever she's having, and I'll be like, how many carbs do you think that is? And then I have my guess, and then she guesses, and I tell her what I thought, and then we usually go with what she said just to see what'll happen. And, you know, unless she's way off, and I'll be like, no, I think it's more.

[B]

Or don't think we're going with 400 carbs.

[A]

No, no. Yeah. No. You know What, Arden? Not 400, but. But it's.

[B]

That's a good idea. I like that.

[A]

It's a very simple way over time, like, it's not going to pay. This is not a process that will pay you back in three days, but it'll pay you back over years when.

[B]

Eventually, diet does not pay back quickly.

[A]

Yeah, right. Exactly. Eventually you just see the plate, and you're like, that's 7:70 done. And. And let's go. Arden had a really. She has her period right now, and so she's had, like, a really carb heavy day yesterday. Like, we used a lot of insulin yesterday, and she was good. She did a good job of. Of understanding how much she was eating. And. And. And at this point, too, in my mind, it's a blend of how many carbs are actually there and how many. How much insulin it's actually going to take. Like, I Don't really care about the carb count as much as I care about, like, that looks like. Like, she. Arden had a bolus yesterday. That was 16 units. So. Yeah.

[B]

Yeah, we're not there yet. That would be the 400 carbs for Nora.

[A]

That'll freak you out when that happens the first time, right?

[B]

Yeah, See, that's the. That's the problem. We're trying to. I'm trying to figure out how to transfer this to her. Obviously not fully or even partially yet, but if she's having a good, stable, predictable day, whatever, then. Or at that period of time when she's trying to eat, then no problem. I don't mind her guessing her carbs and putting it in, but if she's about to have PE or if she's just finishing her school or something like that. And it's different when the variables pop.

[A]

Up that they can't grasp yet.

[B]

Those are in my head. Those are things I feel or know. Those aren't things that she knows yet.

[A]

Well, listen, I think you're using one of the most important diabetes parenting tools that exists that people don't think about all the time. And it's texting.

[B]

It has been revolutionary this year when we had school, first of all, her ability to read and write, obviously, has taken off, and so she's able to. Last year, she wasn't there yet with this, but Covid at home, she's had a lot more tech time on her school, iPad or whatever. So she understands how it's all working, and she enjoys it. She enjoys having the independence. She gets to have play dates by herself without me. She gets to do things. And I think that has been a huge incentive for her to want to kind of take some of her time back or I don't have to go pop into her room when she, you know, wanting to just rest or read a book or whatever. I can just send her a message, and she'll do it by herself.

[A]

I think it's. It just. It can't be. It can't be stressed enough how helpful texting is for all of that stuff. The feeling a little, you know, autonomous and being able to make adjustments more quickly. Especially, like, the idea of going to the nurse's office is like, an antiquated idea for me.

[B]

Yeah. Yeah. Well, it's hard right now, too. Like, the nurse, obviously, her health center is for sick people. Like, they blocked everything off because they wanted to have a, well, clinic and a sick clinic, and so to have to try to take Nora somewhere to check her blood Sugar or to give insulin is just right now impossible. So the fact that she's willing to do this by herself, she had seen the all know fantastic teachers that have supported her and double checked to make sure that it's going well while she's busy at school or whatever. But it's been, it's been really great.

[A]

Jen, you have a really good attitude. I appreciated this conversation very much, except for the part in the middle where you made me sad and upset at the same time and I felt nervous and anxious and by the way, gained a completely new appreciation for action stars because you certainly were not Bruce Willis in that moment on the plane you were just like. And I would have been too, just so you know. I'm just saying that I think those movies aren't real, Jen.

[B]

No, no, there's no way. Like I don't see it. Like, maybe there's a few people that would spring into action. And I was like, oh, no. I don't know.

[A]

I've been alive almost 50 years and I've not once seen anybody act like Bruce Willis didn't die hard. And you would think by now I would have seen one person. I think we all do about what you do. We're like, somebody hold my baby. You're a stranger. Here, take it.

[B]

The thing is, the baby was asleep in the little bed that they have on the airplane. She offered. When she woke up, she came to me and she's like, I'm a mom. I have five kids or four kids or something. And you look like you need some time with your other kids, so can I just please take her for you? Like, it was the kindest thing.

[A]

Wow, a nice sexually liberal woman helped you with your baby. Five kids.

[B]

Yes, it was her and her husband. It was their vacation. They were going home. Like, I don't know this. I remember the weirdest things about this trip because I literally, I do not know the name of the city we landed in. But this lady, like, I know her life story. She told me once, she called me a few times afterwards. Like, kindness, absolute kindness.

[A]

That's lovely. Very nice. All right. See, there's goodness in the world, everybody. All you have to do is go into DKA over a body of water airplane to find it.

[B]

You know, if you can't find it there, then you're really not going to find it anywhere.

[A]

First, I want to thank Jen for coming on the show and sharing that story and for making me nervous. I want to also thank the Dexcom G6 continuous glucose monitor, which you can learn more [e-mail] juicebox and of course Omnipod and that free 30 day trial of the Omnipod Dash that you might be eligible for. Head over to omnipod.com forward/juicebox last of course, but never least touchedbytype1.org there are links in the show notes of the podcast player that you're listening to right now or@juicebox podcast.com if you're listening in a podcast app, please hit subscribe or follow. If you're enjoying the show and think you know someone else who might enjoy it too, let them know about it. If you really love the show and you have this beautiful 5 star review pen up inside of you that you just can't wait to let out, do that wherever you Listen, Apple Podcast, etc. Etc. Cetera. Are you looking for the Diabetes Pro Tip episodes? Don't Forget they're at episode 210 or at diabetesprotip. Com. You can also find them@juiceboxpodcast. Com. There are so many to choose from. Get started today.