#478 DKA on a Plane
Scott Benner
Jen's daughter has the most harrowing type 1 diagnosis story that I've ever heard.
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Scott Benner 0:00
Hello friends and welcome to Episode 478 of the Juicebox Podcast.
On today's episode, I'll be speaking with Jennifer, she's the mom of a child with Type One 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 Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with insulin.
Real quick, if you're looking for the diabetes pro tip series, they're available at diabetes pro tip comm where they begin at Episode 210 right there in your podcast player. If you're listening in the podcast player, please follow and subscribe.
This episode of The Juicebox Podcast is sponsored by the Dexcom g six continuous glucose monitor. And by the Omni pod tubeless insulin pump, you can find out if you're eligible for a free 30 day trial of the Omni pod dash at Omni pod.com forward slash juicebox. And to get started with the Dexcom, je six or to learn more, you're going to want to go to dexcom.com Ford slash juicebox. When you're finished with all that, head on over to touched by type one.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 at Juicebox. Podcast calm.
Jen 2:16
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.
Scott Benner 2:26
And how old is Nora? She said she's the sex. Okay, yeah.
Unknown Speaker 2:30
Well, she'll
Jen 2:31
be seven here in a few months. So Gosh, I don't know where time goes.
Scott Benner 2:34
Tell me when she was diagnosed.
Jen 2:36
She was diagnosed when she was three and a half. So we've been doing this for for almost three years now.
Scott Benner 2:45
Isn't it funny? You've been doing it for like two and a half years, you know, like three years. 510 feels like a while now.
Jen 2:51
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 and then it didn't then it's just now it's part of life.
Scott Benner 3:01
When did that happen? The changeover between this is untenable to it's part of my life.
Jen 3:08
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 what, why why we were why what was happening, what was good.
Scott Benner 3:21
Isn't that an interesting distinction?
Jen 3:24
Yeah, it is. It's a big distinction because I like 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, there's I feel like there's a lot of common phrases like, Well, you know, it's diabetes and and what can you do? And, and, and I felt that way, I was totally there in the beginning and through through much of their beginning of it and, and no, yeah, there might be moments. I'm like, wow, I wonder what this could be. And eventually I'll be able to figure out I might not know in the moment, but I'll know. Eventually, it was a growth. Oh, she's getting sick. Oh, she did have a few extra skills at school today that I didn't know about or whatever. You know,
Scott Benner 4:11
I think it gets exciting when you look at the you have a Dexcom g six and you're using tandem pump. Is that right?
Unknown Speaker 4:17
That's right.
Scott Benner 4:19
I'm excited when I look down at the CGM and I look at the line and in a split second. My brain goes Oh, that pumps lights going bad. And yeah, I actually know what that looks like.
Jen 4:33
I'm getting there. Yeah, this is um, I don't know. I feel like it 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 are getting sitting and not going outside as much.
Scott Benner 5:04
So she needs more insulin, I'm guessing for the sedentary lifestyle.
Jen 5:09
Yeah, she does. But she also then has a lot more weird lows like 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. But the minute she stops doing whatever is exciting, whether it's seeing a friend for a few minutes or being online, and 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 seen in quite some time,
Scott Benner 5:46
I would expect and guess that you're using so much extra probably basil, and maybe even boluses for that, that inactivity, because our bodies not exercising and not moving and not using the insulin more efficiently. That it's I wonder how to like put it into a picture I guess. But it to me, it's the difference between football in the in the 40s and football today. Meaning if you if you look at offensive lineman, this is going to be a strange thing. But do you watch football? Or have I lost you already? Yeah, he got me out here. Okay, so, so offensive lineman. Back in the day, we're just these big, dopey guys who stood up and we're 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 slam down low. And it's
Jen 7:16
totally Yeah, I get that. Except for I'm talking about, like, cuz 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 nine to 230 online with very little like, their 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. And so like she's done with her work, and she has maybe an hour break, she'll drop for that break.
Scott Benner 7:53
Well, stress anxiety.
Jen 7:55
Yeah. And that's what I think it is. That's what I 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 ago.
Scott Benner 8:17
And I want to amend my my answer slightly, meaning maybe it's not as much about the activity is is about the the world of life and like the stress and anxiety of listening and paying attention to 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 a split second. It's interesting.
Jen 8:47
It is but it's hard to predict when it's gonna happen, because it's not something that I'm watching. I can't like, I can't know she's gonna 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.
Scott Benner 9:02
I know you're done cuz I'm running around the house looking for juice.
Jen 9:05
Yeah, exactly. 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.
Scott Benner 9:14
I wonder if you don't choose a number of Skittles. And try one day as soon as school and she pops the Skittles in her mouth and see what happens.
Jen 9:23
That's what I think we're gonna go to we've talked about maybe doing a snack a few minutes before school and like maybe 1520 minutes before school and she just has has a little snack. And we'll 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 going to try a few things to see if we can sort that out.
Scott Benner 9:47
I have an interview coming up this weekend. That will be out with a concert cellist Her name's Alyssa Wyler Stein, 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. To that, yeah,
Unknown Speaker 10:09
it's
Jen 10:10
just as hard. Yeah. And and it's, it's fascinating because I can see it I was shocked when she went back to school. Because they were they were back but with with masks and with like plexiglass in between the kids and very much sitting down and I finally I was there and I sat in class with him for maybe the third day or fourth day, cuz I'm like, something's different this year, like 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 in, they don't have the socialists, 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.
Scott Benner 10:49
Ya know, it's that 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. Yeah, yeah. You know, it's more insulin and then finding a better way of stopping below. before it happens. Yeah, you know,
Jen 11:12
yeah. And that's where we are that we started. We started a few different choices. And they're not 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. Cool. Always. We always have. So we'll keep plugging away.
Scott Benner 11:26
So we have to figure a couple of things out here. One is, you seem to live. But you have a pretty he's a pretty white lady name, but you live somewhere else. No, it's
Jen 11:40
true. I was born in Pittsburgh, Pennsylvania, and we I haven't lived in America, really? Since I was 18.
Scott Benner 11:49
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.
Unknown Speaker 11:54
Yeah. Right. Well, yeah, no, I
Jen 11:56
was born in the 80s. in Pittsburgh. So yes, I know what football is. No kidding. My parents have made sure of that.
Scott Benner 12:03
How do you leave the country? Anything? Are you running? Quickly, Jennifer? That's all I need to
Jen 12:10
know. Thankfully, no, no. The um, you know, those those career days at school, and somebody comes in and talk 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 u dub in Washington State. And he's like, Well, you could do that. And it really caused me to pause. I'm like, yeah, maybe maybe I could. Yeah, so I found it. I found a university and I went to university in in France, and tried to come back for a little bit of time to America after that, and it it. It didn't work. Were lots of years later, and I'm still abroad.
Scott Benner 13:00
So do you speak French fluently from that experience?
Jen 13:03
At one point, it was 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. Um, I wouldn't call it fluent. anymore. It there just has been so little practice. And we're working on another language. Now since we're in the Middle East. No, Arabic is tricky. A lot.
Scott Benner 13:27
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.
Unknown Speaker 13:47
Right. I mean, I
Jen 13:47
don't think I fully realized that what he said how how hard that must have been until I had kids and I'm like, wow, like you want the best for them. But and 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 but it did
Scott Benner 14:05
you imagine he's he just walks into the other room. This is your mom. She's a solid dad and I just did out there I told her where she could go to France shall never go it's no big deal. You don't realize growing up in Pittsburgh make you want to go to Pittsburgh sometimes too. So we're just wherever you grow up, you know, like you're nice. And it seems small. It's true.
Jen 14:24
Yeah, I was only in Pittsburgh for a few months. And then I grew up in Washington State
Unknown Speaker 14:29
No kidding. But
Jen 14:32
yeah, I mean it's it's not that I loved where I grew up. I loved you know, I The hardest part obviously is being so far away from my family. Um, but I absolutely love it. I love being abroad. I love I love my family. I love the that we've the life we've created and all these random but not random places, and I don't know. It's cool.
Unknown Speaker 14:53
Working out.
Scott Benner 14:54
Where did you meet your husband in Paris. Okay, but he wasn't from France, either.
Jen 15:00
No, no, that was the one thing my grandma said she's like, don't go to France and meet a French guy moved to France. But now he's he's actually from Yemen. So, um, when we got married, I moved to Yemen.
Scott Benner 15:13
Your grandmother should have more specifically said don't go to France meet a guy from Yemen and move the Jordan.
Unknown Speaker 15:19
Well, right.
Jen 15:19
I know. It's true. Like, nobody could have predicted any of the craziness that has happened once I got my acceptance into France to university there, but yeah,
Scott Benner 15:30
that's really something. Okay, how long have you guys been together?
Unknown Speaker 15:34
Uh, um,
Jen 15:35
I was in Paris when you read in Paris? 2002. To 2005.
Scott Benner 15:41
Okay, so you've been out you were married a good bit before you had children then too?
Jen 15:47
Well, yeah, I, um, we. He worked for a while. And I actually decided that I wanted to live in America and work. And, 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 what better opportunity to go abroad than that. So I went to the University of Edinburgh, in Scotland, for my masters, 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. Wow. So, john, you
Scott Benner 16:24
have wanderlust?
Unknown Speaker 16:26
I do? No, no, no,
Jen 16:28
this this this lockdown without traveling as Jeremy bunker?
Scott Benner 16:31
Well, that's what I was gonna get to is. 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 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 gonna 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 moved recently, and I had been to his place yet, I took him to 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, is what he's not married, but his partner. They're both working in a room together. There's two kilometers set up. And I'm like, oh, boy, like, I wonder how long? That's like, forget my brother. Like, how long is that going to work?
Jen 17:50
Right. It's true. We we set Nora, 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. We're missing the outdoors? For sure. Yeah, we have.
Scott Benner 18:08
So I found myself complaining that we were all in separate rooms doing something. And now I feel lucky that we have separate rooms. Yeah. And but tell me about 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, 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 g six continuous glucose monitor. Now, why is that? Well, if you're using insulin, if you have type one, or type two 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 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 is 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 following 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 Alright, this really is some stability. This looks like where we're where we're at now. Well, I'm 35 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 eye. Phone, 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 forward slash juicebox. Sometimes you want to do something, but you just can't bring yourself to make a change. I understand that. And so does Omni pod. That's why they're offering some of you a free, no obligation trial of the Omni pod dash that lasts for 30 days a 30 day free trial, you may be eligible head over right now to find out Omni pod comm forward slash juice box. Can you imagine? Of course you can't you mean 30 days, you know how long that is? Anyway, you get this, this little whatever we're gonna 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 choices but on the pod wants you to have, 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 and if I don't like you shouldn't have to feel like that. Just head over to Omni pod.com forward slash juice box and see if you're eligible for the free 30 day trial of the Omni pod dash. That's the way to get started. If you're not looking for a big 30 day trial on the pod also offers a free no obligation demo, it's just one nonfunctioning pod that you can actually wear just to see how you feel about it. There's a lot of options over there and on the pod.com, forward slash 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 around the pod, get your Dexcom that you should be checking out touched by type one.org. And finding them on Instagram, and Facebook. They're a great organization doing wonderful things for people with type one 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 out. At touched by type one.
Jen 22:14
They've put in some restrictions. And they were they started a while ago. And then they were lifted because we were doing great, like people were concerned here when there were 22 cases a day. And it was nothing like compared to the world and to what I saw with my family in America or or even anywhere else. And so the restrictions got lifted. And then and then as a not that long ago, the cases just started going up. So they've started to put some new restrictions and so they closed down
Unknown Speaker 22:42
schools for a while
Jen 22:43
it was a fourth grade and above. And then kindergarten through third grade, I think in 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, we can tear 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.
Unknown Speaker 23:24
Like it doesn't matter to me.
Jen 23:25
Yeah, it's it's either 11 or 12 o'clock at night, not like this in a cafe right now anyways, with everything else going on, um, but 11 or 12 at night to 6am is 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.
Unknown Speaker 23:42
Gotcha.
Jen 23:43
Wow. And we have an apartment so
Unknown Speaker 23:45
you're not leaving an apartment?
Jen 23:47
Well, we're not like words, like we can go run around in the garage and do some bubbles on the roof. But we're not going to go for a walk. We're not going to do anything else like that.
Unknown Speaker 23:55
Is it working? Or numbers going the other way?
Jen 23:58
For a while it wise and no, it's things are going a little more about 2025 between 2020 500 cases a day, I think and 30 ish 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 right yeah, so there's 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 government's honestly because there's just so much balance that has to be happening right now. with everybody wanting different things
Scott Benner 24:39
was your daughter. We're both your daughter's born in Jordan.
Jen 24:44
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. Um, and then Dahlia the three year old was born here.
Scott Benner 24:56
What are their first languages English Okay, so you guys, you guys out
Jen 25:01
there, 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. Okay. And 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.
Scott Benner 25:21
So you guys are learning the language? Because you're because you feel like you're gonna stay in that they're gonna grow up there.
Jen 25:27
Yep, well, and it's their family too. Like he's maybe 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 all know English. So they, they talk far too much English just to learn our Arabic very well. But that's it's lovely. Because then we, the girls don't aren't isolated because of the language. So they are learning. We're all learning.
Scott Benner 25:58
How is it? How does the healthcare system work there? What's the process?
Unknown Speaker 26:05
It's pretty great. Well,
Unknown Speaker 26:07
um,
Jen 26:07
if you're comparing it to America, it's fantastic. We're lucky to be here.
Unknown Speaker 26:13
I'm
Jen 26:15
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. Um, 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 about like, it's a huge culture shock go into America, and we're there for the summer for a holiday or whatever. And they're like, put your prescription hasn't been renewed yet new, or you have to call this and I'm like, yeah, I forgot. Like, you have to prove that you still have diabetes. Like, it's not going away. Like why? 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 um, things are available here. Obviously, you can have test strips, you can have, like good meters, there's Dexcom Medtronic are both here, obviously, we, you know that we're on a tandem sum. And we have chosen to do that because we love the fact that you can upgrade with an online
Unknown Speaker 27:29
update. Yeah.
Jen 27:30
So that you don't have to be anywhere particularly in the world, you just have to have the prescription from the doctor. So nor does have to endocrinologist she has the one here that we see when we're here. was fantastic. Pretty hands off but 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 a prescription so that we can maintain the technology that we like, because while there is Dexcom here it there on chief orangey five, actually, although i know i think they just said that they're phasing out the g4 finally. And Medtronic is also one one generation behind I think they've got the 640. It's even different from what it's 640 or 630. I know there's a little bit different because it's the year peon version.
Scott Benner 28:17
Wow, that's interesting. They can kind of balance those two worlds and end up getting what you need out of it.
Jen 28:24
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 was 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 by
Scott Benner 28:55
just helping healthcare workers healthcare funnel through employment there or does it does everyone have it and you just there's a certain amount you pay? How does that part work?
Jen 29:04
If 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 bundled together a lot of the times if you're trying to get everything together our insurances It's strange. It's It's very, 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 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 like in Nora's case, God forbid we have to ground a plane because somebody is 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, 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. So
Scott Benner 30:24
Wow, that's a lot. So it must be great living there if you guys are willing to do
Unknown Speaker 30:29
it is no, no,
Jen 30:30
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 where his job and Yemen. So we tried being in America and the 12 hour timezone change or the 10, or whatever it is, when you have Daylight Savings Time to the east, to the west coast. Is, is really hard it like it's too far away. So we're we're happy to be here in a place that has welcomed us. And I can't speak highly enough about Jordan.
Scott Benner 31:00
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.
Jen 31:08
Well, no, he he, he goes to Yemen. So he still travels for six weeks, two months at a time and he'll go working him in. 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 say we can figure things out. But the kids, obviously with a 12 hour timezone change. It is really hard in America to get those toxic, 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 it's possible to do. I wouldn't say simply, especially right now, but it's possible to do much less complicated.
Scott Benner 31:50
I'm just trying to imagine that your kids at like three in the morning like you're holding the phone in front of face like say hi to daddy.
Unknown Speaker 31:54
Yeah.
Jen 31:57
I'm assuming it'd be a lot like if if you give more juice in the middle of 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, I'll see you later, mom.
Scott Benner 32:09
I stopped asking many years ago. Do you remember having a juice last night? That doesn't? Nobody remember? Yeah. No,
Jen 32:16
the only like, the only time I know she remembers is if it was particularly a bad night and she has to go the bathroom potential wakeup so that balance will come and be like she did we have a lot of juice tonight. Yes, sir. is bad night, honey. That's hilarious. It's funny.
Scott Benner 32:29
Arden only has to pee overnight if her blood sugar is high, not if it's been low, I guess she she's must have a tank somewhere she puts that juice in so
Unknown Speaker 32:37
well, um, and
Jen 32:38
it, like I said doesn't happen much. But if we completely do something wrong, it was in 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 think she, she just goes about them a lot. So
Scott Benner 32:56
listen, I'm one of those people. If I'm up, I might as well go. I just figure you know, what the heck? I've maybe she's in the same part. Feeling
Jen 33:05
make sense to me?
Scott Benner 33:06
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?
Jen 33:17
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 live 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 an American, 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. Um,
Unknown Speaker 34:10
and then.
Jen 34:12
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 redo the insurance and they didn't ignore it. They said her agency was too high and it was unreasonable for them to try to it wasn't an American company and it was something else we were trying to do. And I was like, What are doctors say she's doing? Well, like she had a seven ish seven and a half ish, a one c it was an
Unknown Speaker 34:39
awful. Um,
Scott Benner 34:40
so the insurance company used her a one C to try to deny insurance.
Jen 34:45
Yeah. And, and, and to be honest, like, it took me a long time to be okay, like, I feel like the her diagnosis was really hard on me. Um, it was a really, it was it took me a long time. Trying to be okay with thinking about it with with with 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 can 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 GED 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 enzyme being used in such a tiny little body. But I'm like, but the doctor 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 you keep going, you're doing fine. And as they do, and they're very, you know, 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 if something goes wrong with a young kid who suddenly doesn't want to finish, you know, spaghetti or whatever. And so it got me thinking. And that's at that point, that's when we kind of dropped into the fives for her agency. And we've been that way now for a year and a half for two years. And, but I still feel like I still felt 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. Um, she was going flow 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 it just like it was like we just kept kind of pushing through. And there was a lot of room for improvement. So while she had a pretty good center 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 pumped 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 he cared about was making sure that she wasn't having too much chips or Skittles.
Scott Benner 37:37
Yeah, looking for more stability. Jen, you have been on a What's the time, like, frame for that? How long did all that take?
Unknown Speaker 37:47
Which like
Scott Benner 37:48
everything you just said, a year of your life to get from A to B? Was it two years? How long did that like? Ignore I was
Jen 37:56
diagnosed five weeks after Dahlia was born. Okay,
Scott Benner 38:02
hold on, hold on, hold on, slow down. There we go. So five weeks after your second daughter's born, your first daughter is 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?
Jen 38:16
Yeah, cool. So we, um, 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 then that gives us a good chunk of time to be an American, I can go visit my grandma or my sister, whoever.
Unknown Speaker 38:33
Um,
Jen 38:34
so we were on our way to America. I'm 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 there despite being potty trained. And the doctor here said she was fine. Like that she was jealous of the new baby. Um, and so we're like, oh,
Unknown Speaker 39:01
my God,
Jen 39:02
I'm tired. Like, she's a doctor. She's certified in America. Like, she must know what she's talking about. And well, we'll get through this and we'll go do our annual checkup in America with the doctor there and show him or put us on a plane. And I was by myself with the two girls. And Nora went into DK somewhere between London and Phoenix over a huge body of water.
Unknown Speaker 39:26
And
Jen 39:29
she was we knew she wasn't feeling fantastic, but I just figured it was maybe nerves or I don't know if we're sure there's a lot going on. And so we just kind of we kind of like ignore this just push through on the other end is grandma grandpa will 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 um 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. Then he came over and he checked her. And nobody was telling me actually what's going on. But they're like, I think it might be time for us to land the plane, really. 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 going to get as fast as we can to, to Canada, to the first place we can learn. And so we did, we landed in Canada. And I like I don't even remember the name of the city anymore. Like I said, 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, hey, 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 gonna 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. Um, 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 air ambulance with Nora or you want to wait here with Dahlia to we find her car seat? And I was like, wow. Like,
Scott Benner 41:42
that's what that movie is about? You know?
Jen 41:44
Yeah. makes that choice. And, and and then thankfully, they did find it. And, and then we moved to the hospital in 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.
Scott Benner 42:15
Was she unconscious at that point.
Jen 42:18
She was unconscious at that point. And it took her about 12 hours to regain consciousness. And so then, once once she was conscious, I knew that we'd be fine. But you're 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 we were inside. Like for two or three. 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 jet. So she did.
Scott Benner 42:56
What can I tell you? This is the I mean, this is 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 movie 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 um, but seriously, it's 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 DK is. I'm like, Oh my god, that kid could have just died on that plane. That's Yeah, insane.
Jen 43:45
Yeah, well, and then yeah, there was that there. There was a lot of things that I learned afterward that I'm very happy I didn't know before. Because there like I said, there really isn't type one of my family although my great uncle's my grandma's brother did have type one. Um, but we didn't talk about it. And it never came to my mind at the time. Um, and there is thyroid so I get how it could happen. But I but it's not close enough that I would have ever put signs together. And having the doctor tell us that she's just jealous. 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's like, it took me a long time to get over the parts that were hard. 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, it'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 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.
Scott Benner 45:02
Do you? Do you think that this situate by the way your episode is going to be called DK on a plane? keshawn.
Unknown Speaker 45:10
Good to know.
Scott Benner 45:12
And I'm just seeing Sam Jackson run around looking for insulin and there's snakes falling everywhere. This is how it's gonna go.
Jen 45:17
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 I'm not prepared to say anything quite yet. And I think it was probably to maintain my sanity before we got on the phone. But I did not know that. This is what they were thinking that anybody had a good idea was going on the Dr. Phil, I
Scott Benner 45:35
Children's Hospital didn't ask anybody for a meter. You didn't see them test your blood sugar and nothing like that.
Jen 45:39
No, he did. He did. Oh, and I didn't put it together.
Scott Benner 45:43
Okay.
Jen 45:44
And it was a meter from the UK. And so her blood sugar appeared low. But he didn't know it's from the UK. And she's he's American. So there was some juice given like it was it was really like no, I looked back at it. And there was some things that was just it was really hard all around.
Scott Benner 46:04
Wow. Wow. That's all crazy. Geez, I swear to you, I I've heard 500 people tell me how they are their children have gotten diabetes that those initial things and I am no lie. I've never felt so stressed out 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.
Jen 46:40
I mean, you know what, we're here. We're here talking about diabetes. 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 well, that's
Scott Benner 46:49
that's what I was gonna ask you Next is that that that scenario, that situation? Those few days? Had to I'll just put this out that had pretty good, right?
Jen 47:00
Yeah. Okay. It did. It did really well. And then we got, you know, and then we got to like, I can't remember that the phone call that when we finally landed the plane and microphone turned on a heads reception, like, Oh, my God, I got to call Omar and say he just put us on a plane, but we're five hours early from my husband. And and tell him that we're actually in Canada, and our daughter's on an ambulance. And I've got no idea of 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. Um, so yeah, like, but then I think back in like, I like, I don't know how I must have given my phone number and at some point, but like, there was one lady on the plane that just told Dahlia for like, five hours. She's like, 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, in Phoenix and like, I'll call your mom and will 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 they like.
Scott Benner 48:20
It's I'm trying to hold on to. Well, now I realize I'm gonna cry Jesus. This is I thought we were having a nice conversation for the first time. Five minutes.
Jen 48:28
Cheese. Yeah. And we were we were we still are. I don't know if I could pass you tissue.
Scott Benner 48:37
I have them here. Don't worry. I'm used to.
Jen 48:40
Okay, excellent. So I'm not the first one to make you cry.
Scott Benner 48:42
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 ladies home. Baby. Doctor misunderstood the meter.
Jen 48:52
Yeah, like, the one thing that I think, yeah, there's like, there's not many things. I'm the 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 day was going on. But they were just like, here, what can I do? And they just kind of did it with with love. And from that day forward. I mean, the people that that I find the kindness 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 might not have eaten or slept or? I don't know. Like, I love that about this. I love that. 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.
Scott Benner 49:48
I have to agree with that. That's for certain. Oh, geez. Okay, all right. I don't want to hear any
Jen 49:55
good. The good news is like she made it after. So for seven days in Canada, my dad was there for most of the time. So he just had a ball with Dahlia, they checked into a hotel, and God knows what they did. But they were having a good time. And then we moved to Phoenix. And we started to figure it out. But because of the situation that I, you know, showed up to Phoenix with my, they gave me an exchange chart for food in Canada. And so I was like, okay, so I pull whip out this chart, 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 been a few times of relearning stuff. Yeah. 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, um, and then trying to make it work for you. And so that I mean, thankfully, there's a lot of information out there.
Scott Benner 51:08
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 takeaway to breads, you know, like that? Yeah.
Jen 51:45
No, it's true. Like it was it was exactly.
Scott Benner 51:49
And, and, and not everybody. I mean, I'm still, you have to understand that when I started this podcast, I didn't, I knew what Pre-Bolus thing 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.
Jen 52:13
It's me, it took us It took us a year or so to even come to that car. Like I never dawned on me in the beginning. Because I mean, to be honest, nor 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, yeah, but um, 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 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 more to do. And then and then doing that, again, when we came back to 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 been 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.
Scott Benner 53:23
And so he didn't see her for months after she was diagnosed.
Jen 53:29
No, he hasn't been able to get a visa for America for for a while.
Scott Benner 53:33
That's amazing. I'm sorry. So.
Jen 53:35
So the choice was we 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 and then come back here and we've had to make that choice. It'd be less traumatic for the girls to not pull them away from what they were expecting. Well, nor at that point, I didn't remember much, obviously. So we decided we decided to stay and I can't imagine him making that choice. It was a completely selfless choice on his part. Well, no, that's
Scott Benner 54:09
really something I'm, 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 Warp 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. I go to a different place where a third set of people talk about it a different way as well. And yeah, then you try to meld all that together. While you don't know what you're talking about. That seems impossible to me.
Jen 54:45
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, 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 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 and getting there like you just kind of have to keep trying. I and
Scott Benner 55:40
yeah, I hate that. That the idea is espoused without the supporting information, meaning, yeah, no one, no one will tell you that. They'll just say like, Oh, this is your Basal insulin, your Basal insulins job is to keep your blood sugar stable away from food. Okay, great. No one. And then they say, and this is how much Basal insulin you get. It's it's x amount of units a day. If you're if you're, if you're injecting, or they'll set you up on a pump and go, okay, it's point three, five 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 is not right, then the Bolus is 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 sugars. And that's, that's all insane. It just really is. It's it's the idea of, I don't know, just it's teaching someone to drive a car and tell me 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 or disseminated usually. But nobody even says, Hey, listen, this basil is going they don't they'll say it may change once in a while. But they won't say it's going to change. You know, like 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 it could be and I get that it's a lot of information. It seems like important information to me.
Jen 57:18
Well, the thing I wish that people would talk about in this obviously is worldwide is so this is what's going on right now. But tomorrow may be very different. I know you'll 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 question book or a fold out of like, you know, card exchanges, I don't, I don't care whatever information you want to give them. But if the idea that what I left with a hospital was going to pick a hospital, it doesn't matter. Because they all it all felt the same. That that was that was law that was right. And, and whatever was happening was something else, or you know, it's diabetes, and it's just, it's really hard. So there's gonna be some roller coasters. And that's, that's sad, I find I find, I find the the idea of the fixed the fixed pneus 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 Dexcom, you have all the CGM and the pumps that can can help you figure out, 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. Like with that technology, there should be a disclosure thing. 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 it's your kids body as they grow or change through this disease, but also through life. Like if you could, if you could tell anybody something important, you should say that, yes, we could can do anything, but everything they do is going to cause a change in their body and just watch out for it. And
Scott Benner 58:59
the I find the bigger issue around that is that they'll tell you, you know, oh, today, you know, nothing. 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 write 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, especially in a life where until then medication has likely meant to you to have these every six hours. One of these every morning. You name it like and then that's it you don't think about it again. When you see algorithm, Jen manipulate insulin 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 basil rate and a static idea of how to give insulin for foods is archaic at this point.
Jen 1:00:16
Well, it totally is like a man tell you like it was shocking. We came back here and we saw a doctor not 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, they were just telling us what to dose like, I would call them and say, Okay, we're gonna eat this for lunch, and they'd give me insulin because he 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 a what you want, and then do it on this kind of thing. It was this tiny scalar 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, you'll have two units and a 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 when we left that doctor's office. Because I just that seemed really, really wrong. To have to take away the freedom of all that. Um, 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 his back. Because I know at the beginning, when we started doing these things in our I was actually doing really well with like her time and range and things where things were going, but you could see she was feeling better. Omar looked at me and he's like, well, this, 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 things have changed, anything jumps back in. But 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.
Scott Benner 1:02:18
Right? I am, you know, as you're talking, I realize I must be a full. 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 just, 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? Well, I
Jen 1:02:57
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 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 I was diagnosed, or any of the first doctors that this is the right amount of insulin, and it maybe it wasn't one point, the right amount of insulin, and then she just she changed and she needed more or less or whatever. Um, I, 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, you know, glycemic index or, or any of the things about macros or whatever else. And it's taken me a long time to get there. But I wasn't I was, I was in a place where I think I was looking for the answer to be like, what they tell you in the beginning, insulin and 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 like I was at a place where I wanted that to be the answer. And obviously it's not a 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 like a lot of work
Scott Benner 1:04:39
wouldn't have been easier in hindsight like in hindsight, if I'm not I'm not trying to pump up the podcast I just as an example like it 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 too much now you'll be done. Do you think you would have skipped over Is there a lot of that turmoil?
Jen 1:05:04
I don't know. I hope so. I would I would like to think I would, because then I probably would have had a project to focus on as opposed to memories. Yeah. 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 nor because no one liked Chris, like, I don't know, like, I left with 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 for the challenge part of diabetes. I call it what you will, and it might have been some version of denial, I guess. But um, I don't know. Like, at the same time, I really didn't think to look somewhere else. I, 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 those guidelines, things are. Yeah, they're 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 I would like to think that I would have I would like to think that if somebody gave me a book earlier that was a little bit more current rather than dated. Um,
Scott Benner 1:06:35
did not feel sick to you. Like What Did you think I have a sick kid, and she'll be sick forever.
Jen 1:06:42
No. Oh, you mean? Like on the airplane or
Scott Benner 1:06:45
No, I mean, in general, like once you're home, 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, and struggle? No, no, it didn't feel like that. Okay,
Jen 1:07:00
no, Norris Norris 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, and the whole summer like, I would look at her. And I feel like, wow, how did you just go through that? And I just went through that. And I look 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. So it
Scott Benner 1:07:25
all seemed it still seemed very possible. You weren't like, you weren't in a no, it
Jen 1:07:30
did it? 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. It shouldn't. 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
Scott Benner 1:07:58
her, you're a smart lady, Jen, you were able to figure through all that, while you were still like, somebody felt like you've scrambled your brain, I would imagine.
Jen 1:08:08
Well, like I said, the only thing I want out of all of this is her to do whatever she wants in life. Like I don't I don't care what it is, like 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 for stopping her. And at that point in time, it felt like my, my emotions about all of this could easily have been turned into hers. Right?
Scott Benner 1:08:42
Well, yeah, I do think it's important not to project because you're having a completely different experience than that you're
Jen 1:08:48
like for the longest time she had one of those, you know, baby patches 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 one diabetes. Blueberry pouch gave it to me. Um, me she was three to three and a half like she 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 place, right?
Unknown Speaker 1:09:27
Oh, so yeah, that's cute
Scott Benner 1:09:30
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 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 thru 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.
Jen 1:10:20
I'm assuming that's exactly the same as if she felt no, I think we moved on from that because Dahlia had a pouch the other day and nor asked for one so and with no comment about blueberry steamy diabetes is gonna give you diabetes or something. Yeah, exactly. So I think we moved on but but like, yeah, it was a long time before she she understood that. It wasn't
Unknown Speaker 1:10:40
that.
Scott Benner 1:10:41
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.
Unknown Speaker 1:10:49
I get it. It's a
Jen 1:10:50
lot. Like I said, it took me a long time to get here. Um, no, no,
Scott Benner 1:10:55
you feel better now. Things are smooth. You understand what you're doing? And that
Jen 1:11:00
is, yeah, we have our moments. But yeah, we know what we're doing. And we know what's going to change. And we're okay, we're together. You're happy. That's that's what matters more than almost anything else?
Scott Benner 1:11:11
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. Yeah,
Jen 1:11:52
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 to watch now and she's getting text messages from me or from Omar, and she'll give herself insulin and she'll give herself, um, juice or Skittles, or whatever she needs at the moment or check her finger. And, and so she's in the process of trying to figure out how many carbs are in things. So we had, I think there's a case it is or something other day, and she looked at me, she's like, looking at the plate. So Mom, this looks like 400 carbs, like Okay, so now we have our next project to work on. So now we're trying to transfer
Unknown Speaker 1:12:31
the information from me.
Unknown Speaker 1:12:34
Because Lord knows there's not 400 carbs, and I'm just
Scott Benner 1:12:39
as long as her pump has that little that safety thing where it can't give her too much insulin.
Unknown Speaker 1:12:44
But it does, it does. But but I
Jen 1:12:46
see her trying so so there have been a few, you know, Miss 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 a calculator now and she's trying to give her the card 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, I know. But I the
Scott Benner 1:13:12
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 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 will happen. And you know, unless she's way off, and I'll be like, No, I think it's more or
Unknown Speaker 1:13:33
don't think we're going with 400 carbs. No, yeah, no,
Scott Benner 1:13:36
you know, what are not 400. But, but that's a good idea.
Unknown Speaker 1:13:39
I like that. It's a very
Scott Benner 1:13:40
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 eventually I pay back quickly. Yeah, right. Exactly. Eventually, you just see the plate and you're like, that's 70 done. And, and let's go Arden had a really she's having her period right now. And so she's had like a really carb heavy day yesterday. 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 at this point to, 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. I don't really care about the carb count as much as I care about like that looks like she Arden had a Bolus it was 16 units. So yeah,
Jen 1:14:32
can't word out there. Yeah. 400 carbs for Nora,
Scott Benner 1:14:35
when that happens the first time.
Unknown Speaker 1:14:37
Right?
Jen 1:14:38
Yeah, see, that's the best the problem when we're trying to I'm trying to figure 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 the 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 They like that. And it's different.
Scott Benner 1:15:01
Yeah, when the variables pop up that they can't
Jen 1:15:04
Yeah, grasp. Yeah, that those are those are in my head. Those are things I feel are no, those are things that she knows yet. Um, so
Scott Benner 1:15:12
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.
Jen 1:15:22
As it has been revolutionary, this year, when we had school, um, 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.
Unknown Speaker 1:15:35
But
Jen 1:15:37
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, she enjoys that she enjoys having the independence, she gets to have playdates 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 and she's, 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.
Scott Benner 1:16:03
I think it's, um, it just it can't be it can't be stressed enough how helpful texting is for all 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 an antiquated idea for me.
Unknown Speaker 1:16:27
Yeah, you know, yeah, well, it's
Jen 1:16:29
hard right now to like the nurse obviously her hers her health center is for for sick people. Like they blocked everything off because they wanted to have a well clinic and that 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 has, you know, fantastic teachers that have supported her and double check 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.
Scott Benner 1:17:00
Can you have a really good attitude, I appreciated this conversation very much, except for the part 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 a and I would have been to just so you know, I'm just saying that I think those movies aren't real, john.
Jen 1:17:26
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,
Unknown Speaker 1:17:33
no, no, okay.
Scott Benner 1:17:34
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, you've seen one person. I think we all do about what you did. We're like somebody hold my baby. You're a stranger here. Take it. And the thing is, I
Jen 1:17:49
did I didn't. The baby was asleep in the little bed that they have, you know, on the airplane she offered when she woke up, she came to me and she's like I have 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 kind of thing?
Scott Benner 1:18:04
Oh, nice sexually liberal woman helped you with your five kids? Yeah.
Jen 1:18:10
It was her and her husband. It was their vacation. They were going home.
Unknown Speaker 1:18:13
Like I don't know this.
Jen 1:18:14
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. Lovely.
Scott Benner 1:18:29
Very nice. All right. See, there's goodness in the world everybody, all you have to do is go into decay over a body of water airplane to find it.
Jen 1:18:39
You know, if you can't find it there then you're really not going to find it anywhere.
Scott Benner 1:18:50
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 g six continuous glucose monitor which you can learn more about@dexcom.com forward slash juicebox and of course, on the pod and that free 30 day trial of the Omni pod dash that you might be eligible for head over to Omni pod comm forward slash juice box last Of course, but never least touched by type one.org. There are links in the show notes of the podcast player that you're listening to right now. Or at Juicebox podcast.com.
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