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Scott
Welcome back friends. You are listening to the Juice Box Podcast.
Kelly
I am kelly. I have two teenagers and coincidentally they were both diagnosed with type 1 diabetes at the age of 6.
Scott
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Kelly
I have two teenagers and coincidentally they were both diagnosed with type one diabetes at the age of six. We are a family of four that has lived overseas for six and a half of the last ten years.
Scott
Two kids. One is how old now? Seventeen.
Kelly
Almost seventeen.
Scott
Okay. And when both of them were in their six year old year, they got type one diabetes.
Kelly
Yes. So with Kayla, who is my older, she was diagnosed at 6. And we found out right after we realized we were going to be moving to France the following year. And so I was able to really enjoy my son not having diabetes for about two years. And it was always a joke, oh, thank goodness it was Kayla that had it and not my son Cooper. And then he got it and we were right. It was so much better. Kayla took it on really well. Cooper has just always been a challenge with eating and remembering to dose and all of that.
Scott
Okay. Are there other autoimmune issues in your family? Do you or your husband have anything I'm talking about beyond type 1 diabetes?
Kelly
Not for my husband or I. My husband's Cousin has Type 1 as well as his father. So my husband's uncle, they both had type one. And my husband's side, it's also someone has Graves disease, but my side, the only thing that they've ever really been somewhat concerned about is my dad was exposed to Agent Orange and they were saying that possibly there's some sort of connection. They haven't found a connection close enough to actually pay for anything.
Scott
Well, I'm going to guess that's about where that'll stop, actually. Right when they. Right when the government gets close to going, we might owe him money. If we figure out the rest of this, they'll probably stop right around there.
Kelly
Exactly.
Scott
He was in. In Vietnam. Yeah, he was. Is he still alive?
Kelly
He is.
Scott
Wow. Gosh.
Kelly
It's his birthday, actually tomorrow. He'll be 82.
Scott
Happy birthday. That's awesome. Very nice. What Agent Orange. What do you. What does he feel like it did to him?
Kelly
My dad suffers with Parkinson's now.
Scott
Okay.
Kelly
And so the VA did actually is. Is taking care of him for that.
Scott
Oh, well, I guess that's good. Is there an idea that that could have implications to his children, his children's children?
Kelly
What I was told is that it could skip a generation. I haven't looked into too much about it. When we found out, we were over in France and I said, oh, great, you know, take a look. But we were, you know, it's hard enough to live over there. I had enough struggles, so I didn't look into it. And I don't need Extra frustration.
Scott
Kelly, you've said a couple of things that make me feel like maybe this has all been a lot for you. Is that fair?
Kelly
It has been. I feel like we've been at this for over 10 years. I feel the burnout with insurance, it gets incredibly difficult. Living overseas can be difficult. When you're trying to switch out libres and you're calling the French system and your French isn't great. When you're going into the pharmacy and they laugh when they ask for your. They call it the cart vital and it's a Social Security card. Basically all of the supplies would be completely free. And they like to remind you that every time you're in the system, going to purchase everything. It's been difficult. I found your podcast when we returned from France back in, I think 2021. So I started listening and I listen a lot and it's still like, if you listen, you'll have your A1Cs in the low sixes. We're at like six and a half to seven and a half right now. Okay. So it's just, it's. Every day is tough with alarms. We get alarm fatigue. And at night you've got one high, one low. And it. Just having two is tough.
Scott
No, I would imagine. And they were. How far apart in age are they?
Kelly
They are about two and a half years apart.
Scott
Yeah, that's it. So your first one gets it and is only maybe 8, maybe 9 years old by the time your second one has it.
Kelly
Yeah.
Scott
Then you have a nine year old and a six year old with type one diabetes.
Kelly
Yep.
Scott
And that was about eight years ago.
Kelly
So Kayla was in 2015 and Cooper was 2017.
Scott
Okay. And would you say that it had, like a psychological impact on you? Did you find yourself looking for therapy or did your stress rise? Were you anxious before and more anxious now? Like, can you describe how it hit you first?
Kelly
When Kayla was diagnosed, there was a lot of confusion. I really didn't understand the disease, that sometimes you need sugar, sometimes you don't need sugar. And there were so many variables. And so I remember at the hospital, they were talking about carb counting and we actually never really got into carb counting. We knew we did. Oh, this is about a few units. And went from that because with so many variables, I wasn't going to make myself crazy trying to understand this totally, like, foreign thing to me of carbs. So we did that. We tried to make it as low impact as possible, especially when we were. Once we moved over to France, there's not going to Be any restaurants that have your carb counts. You don't know when you're. If you're at a restaurant in France, you don't know when the food's actually going to be coming. The pre bola scene wasn't. Wasn't a thing. So we tried to make it, and we were just MDI and finger pricking for seven and a half years. And so we did what we could. Kayla's numbers really hurt. They weren't awful. We were in the Sevens pretty much that whole time. When Cooper was diagnosed, we were actually in Italy on vacation. And that one hit extremely hard. I was actually. I think I was about seven weeks pregnant at the time. And so when he was diagnosed, it was almost like I was trapped to having a third diabetic. It was like I was getting into this pregnancy without knowing that I had two diabetics and thinking this one could get it much, much earlier than six years old like my. My other two. So I was worried that every day would be, is this diaper too full? And just really concerned. And that really screwed me up mentally.
Scott
Okay.
Kelly
For that time when we were on vacation, I was actually. I had. I had suffered a few miscarriages prior, so I was actually on progesterone and baby aspirin. They were trying to figure out what was going on with these losses. And so I forgot the pills when we went to Italy. And so I went to the pharmacy trying to get the prescriptions. And then I contacted my doctor to get that information over to Italy. And then he was diagnosed, and I completely forgot about all of that. I never followed up. I never got the pills. It ended up I lost the baby two weeks after his diagnosis. So mentally, I was a mess. I was worried. First I was scared about my thoughts of wanting this baby so much and then being so scared and then not wanting the baby and then losing the baby and realizing, you know what, Even if this baby does get diabetes, I have two amazing kids right now. It helped make me feel a little better about wanting to grow our family. With that, I ended up trying a few times later. We never figured out what the problem was. It ended up because I had so many other miscarriages, I gave myself some grace on forgetting the progesterone and aspirin. And I got through the really dark place of knowing that I do want another child, that the diabetes is not a reason not to have it for us. But it took a long time to get through it.
Scott
You know, I've been kind of playing around here in Google, Gemini While you're talking. And like you said, the Veterans Administration doesn't recognize a lot of. But there's a lot of information from the community, and it seems like the things that you're going through are not uncommon for a person whose father was exposed. Severe reproductive issues, infertility, generational miscarriages, autoimmune and thyroid disorders, structural abnormalities, babies born with missing limbs, extra digits, web toes, congenital heart defects, that kind of stuff. The V, again, I think the VA says that that's not connected, but the people living seem to think it might be, so it's. That's really something. But. But the, the rest of it, though, the. Your part of it, that kind of journey you went on from, gosh, do I really, like, can I deal with, like, a third kid with type 1 diabetes and then actually experiencing the loss and then refiguring how you thought about it? That's a lot to go through. And how much time, like, how long did you. How long were you pregnant that time? You've probably heard me talk about usmed and how simple it is to reorder with usmed using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up? They don't just randomly call you. But I'm set up to be called if I don't respond to the email because I don't trust myself 100%. So one time I didn't respond to the email, and the phone rings at the house. It's like, ring. You know how it works? And I picked it up, I was like, hello? And it was just the recording. It was like, US Med doesn't actually sound like that, but you know what I'm saying? It said, hey, you're. I don't remember exactly what it says, but it's basically like, hey, your order's ready. You want us to send it? Push this button if you want us to send it. Or if you'd like to wait. I think it lets you put it off like a couple of weeks or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Usmed.com juicebox or call 888-721-1514. Get your free benefits checked now and get started with usmed Dexcom Omnipod Tandem Freestyle. They've got all your favorites, even that new eyelet pump. Check them out now@usmed.com juicebox or by calling 888-721514. There are links in the show notes of your podcast player and links@juiceboxpodcast to USMED and all of the sponsors. Unlike other systems that will wait until your blood sugar is 180 before delivering corrections, the MiniMed 780G system is the only system with meal detection technology that automatically detects rising sugar levels and delivers more insulin as needed to help keep your sugar levels in range even if you're not a perfect carb counter. Today's episode of the Juice Box podcast is sponsored by Medtronic diabetes and their MiniMed 780G system, which gives you real choices because the MiniMed 780G system works with the Instinct Sensor made by Abbott as well as the Simplera Sync and Guardian 4 sensors, giving you options. The Instinct Sensor is the longest wear Sensor yet, lasting 15 days and designed exclusively for the MiniMed 780G. And don't forget Medtronic Diabetes makes technology accessible for you with comprehensive insurance support programs to help you with your out of pocket costs. We're switching from other pump and CGM systems. Learn more and get started today with my link medtronicdiabetes.com juicebox I was 7
Kelly
weeks pregnant when he was diagnosed. I lost the baby two weeks later. And so this was the fall of 2017 and it was a very, very dark place. Yeah, I did actually have. We were at the US Embassy and they do have a psychiatrist there who was incredibly helpful. I had never thought about seeing a psychiatrist before and he was phenomenal. He helped me through everything. I was very against drugs, trying to get anything. He said it's not a tattoo, you can try it if you don't like it, it's not a big deal. He did prescribe me lorazepam and I only know that because of the White Lotus season. I went back and I couldn't remember what it was and there was such a scene about her lorazepam.
Scott
So that was the Piper season? Yes, Piper, yes. Yeah, yeah, yeah.
Kelly
So I went back and I found it. I took, I think it was like during maybe the miscarriage awareness day or something. I knew it was going to be difficult so I took one of those and I, it, I didn't feel any effects and so I was like, forget it, I'm not, I'm not going to do that. But talk therapy was, was incredibly helpful. Having my kids being really great people, I really enjoy them. So that was helpful.
Scott
I just want to be clear. I hate White Lotus And I've seen every second of it. I hate watch it the same way I hate watch Severance. I just want to say yes the
Kelly
entire time through Severance.
Scott
I. Oh, I just. I look at Arden. I'm like, why are we watching this? It's terrible. I said, this is like masquerading as high minded art. I was like, I don't. I hate this. And then next week she says, you want to watch Severance? I'm like, yeah, okay, let me sit down. I think it's possible. I just enjoy complaining about it, but I feel every time I get done watching White Lotus, I feel like nothing happened. Why am I watching this? It's hard to agree.
Kelly
It was. There's a few great scenes and then that's it. But for us, we really. We had just gone to Thailand, so we really enjoyed looking at the scenery. And then next season, they're going to, I think the Alps in France. Tell me that we'll be watching it.
Scott
I hate myself for watching it. I'm sure I will. I really do. I know it's not good. If Mike White is listening, there's no reason he would be. I'm sorry for you, but I just. I know that this is not real. This is. It's made. Walter. Is it? How does it. How do you say his name? Goggins Goddins. It's made him much too famous.
Kelly
He was amazing in Justice.
Scott
Yes or no? Justified. Justified. Justified is awesome.
Kelly
Loved him.
Scott
He was awesome. And Justified also, they gave him a. A sitcom that didn't last very long. That I have to say, I think if the writing was a little better, would have really done. He was awesome in it. I like the guy a lot, but I'm seeing him in like too many commercials now. I mean, I feel good for him, but he looks a little too fit, a little too tan, a little too rich. That's all I'm gonna say. Walter, congratulations. I'm not. I'm happy for your success. Let's move on. Did you blame yourself for thinking about, like, oh, maybe I don't want to be pregnant again. Did you have any of that?
Kelly
Oh, yeah. For that dark period, I had never thought that I would ever think of terminating a baby. So it was probably a week of thinking that. Just a lot of it. Feeling trapped that I didn't have all the information before I got pregnant. Then I turned it around while I was still pregnant, and then it didn't continue.
Scott
So you feel bad for thinking it then?
Kelly
I felt awful for thinking it, but then I Kept trying. So it's. No, it was. It was something where I had the feeling I can honor that feeling and I no longer feel. Feel bad about it. I'm happy that I did try.
Scott
Yeah.
Kelly
Again. But. Yeah. So that was. It was really hard.
Scott
I mean, if I could say, outside of the shock of it happening and the, you know. You know, I'm assuming the crazy hormonal rush you get when you're first pregnant and then the rush that must come after the pregnancy, you know, ends, like, that's all got to be overwhelming. But I don't think that thinking about it is insane at all. Like, I think it's pretty reasonable and rational to wonder. I've got two kids, they both got type one diabetes when they're six. Is this going to happen again? Is that something we can all live through? I think you might be crazy not to think about that from my. From my perspective, so. But I can also understand how it would make you feel once it. You know, once that happened afterwards. My gosh. Well, I'm sorry you went through that. Do you feel like. Can you describe how you feel removed from it? Like a decade? Is it. I mean, how do you look back on that time?
Kelly
In hindsight, thinking about it now, I've definitely turned the corner. For a long time, I couldn't be around babies. I ended up having seven miscarriages, so it was two a year consecutively, basically. And what I really enjoy now is that I really. I don't remember due dates. I don't remember really, like, exact dates on when things happened. I know it was a hard time. I remember. You know, it's. It's a weird thing when babies are triggering.
Scott
Yeah.
Kelly
It's great to really enjoy my family of four. It's great that at this age we have teenagers and we can go on vacations and really enjoy time. So I try to look at those positives.
Scott
Yeah. I mean, babies are like jeeps in the summertime. They're everywhere.
Kelly
Yeah.
Scott
And, yeah, I guess if you're having a triggered moment from it, that's terrible. Hey, can I ask, I hope this doesn't seem insensitive. Why did you keep trying when it was happening over and over again? Like, what was your mindset around it?
Kelly
We kept trying different things. At first it was, you know, the normal. And then the next time we're going to try progesterone and baby aspirin, and then I forgot the pills. So the next time I won't forget and I'll do that. And then the next time I had actual shots. I forget what it was called. Maybe Lovenox or something. And that actually scared me because it burned so much. It was a shot to my abdomen, and I felt so awful for the kids. And I actually posted in one of the diabetic groups, and I was like, oh, my gosh, are my kids having to feel this burn all the time? So. And then we just kept trying more things. And another thing is, we were in France at the time, so I almost felt like had we been home, we would have tried a little harder, like, been a little more aggressive with things. I don't know. But it got to the point where we were going to be moving back to the States. I didn't want to be pregnant during a move, and it was done.
Scott
How did it impact your husband? Did the two of you ever talk about it? Was it. I mean, I can't imagine. I don't want to. I wouldn't want to minimize anybody's experience, but, I mean, your experience and his have to be different, but I would imagine equally devastating. So did you talk about it together, or did you kind of have your own separate feelings?
Kelly
When we were in it, it was very. I was so distraught, and I didn't talk to him about his feelings at all. After and through each time. He would always say we were a team, but really, I was the decision maker on it. We've never really gotten too in depth about it since it's happened.
Scott
From your perspective, do you think he was doing it because you wanted to?
Kelly
No, no, no. We were both. We had always. We're both children of three, and we just always, like, that was our family. We were completing our family.
Scott
Did the pregnancies last about the same amount of time every time, or was it always different?
Kelly
Yes, and I guess that also makes it a little bit easier. I never got past 10 weeks.
Scott
Okay.
Kelly
I think so. It was always, you know, hopeful. But we weren't, you know, it was a weird, like, yep, I'm pregnant again. Okay.
Scott
Oh, but you're not just showing, like. It's not. Like all. The whole physical transformation is not there so much. And that part makes it a little easier to repeat. And because. Do doctors also do that thing where they go, just try again? Do they give you that whole thing?
Kelly
Yeah. And one thing that was weird is. And maybe it was because we were in France, we never got sonogram pictures. We'd see them, but we never actually had them. So I guess it's a little less tangible.
Scott
Maybe they only give them to French people. Maybe Perhaps if they're like, oh, they're American, they can't have it.
Kelly
And one thing is, I really wanted to have a baby in the American hospital in France because they talked about how amazing the food was. They are in tuxedos, and I wanted that experience.
Scott
You're looking for the whole thing. Well, exactly. And that is. I had no idea about that. They're in tuxedos.
Kelly
Yeah.
Scott
Like in the delivery wing.
Kelly
Yeah. It's a private hospital.
Scott
Oh, yeah. I mean, that does sound fun. But, I mean, now you're. It's all these years later. Right. You got a great family and, you know, you're doing well. Tell me about when you said, oh, we thought when the first one got it lucky, that one will be better at this than the other one. Like, has that all played out the way you expected, or is that not the case?
Kelly
Exactly. It's exactly how we expected. Uh, my daughter, she is much more mindful about when. What she's giving, when she's giving it. My son, he will forget. He has no concept of a balanced meal. Right now, he is eating his school lunches every day with, I think it's pizza, milk and apples. You get a little fiber with that. But it's just. It's. It's been tough with him. Trying to text him with corrections has become more and more difficult with my daughter, now that she is a junior in high school. I'm trying to not text her nearly as much so she has a little more control and getting ready for college. But he's just. Sometimes he's just a bonehead and he just doesn't. Doesn't think about diabetes.
Scott
He take after you and she takes after your husband or vice versa.
Kelly
It's. It's definitely that he's more like me and she's more like him.
Scott
Does that make it more frustrating or easier to understand?
Kelly
It's easier to understand.
Scott
Okay. So do you give him a pass more than you should?
Kelly
Maybe. I. Yeah, I definitely expect more from my daughter than my son. The one thing that I really was impressed with is on day one, he gave him himself his first shot at six because he had seen his sister do it.
Scott
He's probably like, I see this all the time. I know what to do. Yeah, yeah.
Kelly
So he can do the things. He just doesn't know how much or when. A lot of times now he's getting to where he wants to give more insulin so he can get low, so he can snack and have all the treats. So.
Scott
Oh, that's not a great plan.
Kelly
No. It's not.
Scott
Can we just at least call that pre bolus thing for a snack later instead of getting low so we can eat?
Kelly
Yeah.
Scott
Yeah, please. Listen, I don't want to be your therapist, but why do you expect more from your daughter than from your son?
Kelly
I don't have to bug her as much. She has always been very organized and so I don't need to expect more. She does what she needs to do and I'm hoping to bring him up to her level.
Scott
So you just know she's going to do it. It's not so much that you want more from her. You just know she has, she's together and she has more to give and she puts it towards this effort.
Kelly
Yep.
Scott
Is that because that's her personality and she's just going to do it or do you think she's beholden to how she believes you and your husband feel and what you want from her? Is she trying to make you happy?
Kelly
I think she's self driven.
Scott
Okay. And he's just like a boy. He's just a knucklehead.
Kelly
Exactly.
Scott
And he's got trouble remembering things like you and. Do you have adhd?
Kelly
I do not.
Scott
Do you've ever. Has anyone ever joked with you and said like, hey, you have ADHD like that?
Kelly
No.
Scott
No. Okay.
Kelly
But perhaps there's. There's definitely times when I, I get distracted, so it's possible.
Scott
Do you have anxiety?
Kelly
Well, I didn't used to. I try to be very go with the flow, but yeah, it's. I think with more moves and less roots and instability, I have more anxiety.
Scott
That's interesting. What about. I wouldn't call you guys transient, but you move probably more than some people, right?
Kelly
Yes. So before we had Kayla, we bought a house. We knew it wasn't our forever house, but we didn't expect to ever live overseas. In 2016, we moved over to France. We were there until the end of 2020 and when we were returning, we didn't want to return to our townhome, so we went to Virginia for two years. We were there just renting. My kids immediately took to American life. My, my son was actually in France longer than he was in America beforehand. But the second he came back, he was all about baseball, soccer, football, and just loved it. And then we had one more move over to Jordan for two years. And so we're back now just trying to find our forever home. And when we say forever home, we're probably thinking just to get it through.
Scott
Through your son through college?
Kelly
Not even through college. I think we'd even be happy with high school, but we're just trying to set down some roots. So I think that has been just a little difficult.
Scott
Okay. And that brings anxiety because you're always thinking about moving again because you're like, it's just not a lifestyle that sits comfortably with you or it doesn't sit comfortably with you. Since the kids have diabetes, it's almost
Kelly
that we're just always kind of in limbo. Where are we going to live right now? We need to find a place so the kids can maintain stability. When it comes to the kids, diabetes, that pretty much travels with us. Whatever we need, we can do wherever. Because we were living overseas, travel became pretty simple. We were able to figure out exactly what we needed to bring. A lot of people would bring three times the amount of things that they needed. And when you're flying with all of these discount European airlines, you can't bring a whole lot. So we tried to be as light packers as possible and it hasn't been too difficult.
Scott
So to the diabetes now, you said A one C has been six and a half to seven and a half with both the kids.
Kelly
Yeah. Cooper. There's been times when Cooper reached eight, it hasn't been for a bit.
Scott
What do you think causes the rise when it happens?
Kelly
I think a big one is the lack of pre bola scene as well as the nights. There are times when we'll have alarm fatigue. One will be high, one will be low, and it just gets where every night is daunting. The kids.
Scott
Can you not put that type a husband onto that problem?
Kelly
Yes. For him, he needs to sleep more. His job is very demanding and so I try to take on more, but when he takes it on, it's more. We all kind of feel it afterwards. Like, I'm so tired and I was up all night. We actually got a sugar pixel recently. I didn't realize that there were different levels of the alarm. I didn't test it. And the first time, the first night we had it on high and almost
Scott
shook the whole house, woke everybody up.
Kelly
He was like, if this is happening, we are getting to divorce. He was like, no way am I going to live through this.
Scott
Hey, before you guys get divorced, let me just say customtype1.com juicebox I make a couple bucks when you buy one through my link.
Kelly
And we did.
Scott
Yeah. Yeah. Thank you. I appreciate that.
Kelly
Yes.
Scott
So your husband is. Gosh, I hate these conversations, but is he not supportive of the whole thing?
Kelly
He's incredibly supportive. Definitely. We've Always been very good at being a team, talking about it.
Scott
But your team stay up at night and he's team. I sleep and don't wake me up.
Kelly
No, he will definitely do it.
Scott
Okay.
Kelly
If he gets up, we all hear it. We hear about it. We definitely work together on it. I am much more invested. I will read the books and listen to all of your podcasts. I also have more time to do that. What I'm trying to do is when we started, the idea of a 7.5 A1C was what we were aiming for.
Scott
Sure.
Kelly
And I mean, we're been at this for a decade. I'm slowly trying to get them to be like, it's your 200. You need to correct. And I would love to get to the point where it's your 1:50. Let's correct. So it's just been hard to get everyone on board to want the tighter control.
Scott
Can we talk about that part of it for me, Kelly, please? Because I would like to separate your family and. And your life away from the idea. So how do. I mean this. Nothing that happens here going forward is punitive. I just really want your opinion. Okay. Your perspective. Does that make sense?
Kelly
Yep.
Scott
Okay. If I told you that while we were sleeping Lava was coming into the kid's room, would your husband be like, but I gotta sleep. Right? He's. No. He'd say, look, there's. There's fire in the house. We gotta go. We gotta. I gotta get up. I gotta be doing the thing. He wouldn't complain. He was tired the next day. Like, why do you think people don't see diabetes that way?
Kelly
Think he would complain about being tired after Lava?
Scott
Oh, you think he would? He'd be like, can you believe there was lava in the house last night? I had to get up and save us all night.
Kelly
Yes. Yeah. It's a tough thing. And I feel like perhaps because we have two to deal with, it just becomes twice as difficult because they aren't perfect at night. And I get it. I know that A1Cs are lowered at night. And so we're working on it. I actually just switched the alarm for the Sugar Pixel while he's away on a business trip to see if the lower alarm is going to work better. I know it's important.
Scott
I know you know it's important. I'm. I'm listening to you and I. And by the way, I know he knows it's important. I'm asking, like. I'm not talking about you guys right now. I'm asking you to, like, Philosophize with me about a bigger idea. Right. Like, I just got done speaking, you know, to a person two days ago who's had diabetes for over 30 years, and they got up in the morning, had three units left in their pump and went to work and knew they had three units left their pump. And then halfway through the work, and they thought, oh, I'll just. Like, I won't eat. I'll get through it. And of course, a couple of hours later, they're out of insulin, and then they can't get home for three hours. Then their blood sugar is like, almost 500. And I was like. I'm like, why didn't you bring up, like, more insulin with you or a pump or something? You know, like the supply say, I thought I'd make it. They know the other side of what happens if they don't. And yet it's not enough to move them to action. And I don't know if it's like, maybe it's wrong to ask the parent of somebody this question, because an adult's gonna tell you, hey, life happens. It gets in the way, blah, blah, blah. But, like, it's like, there's some pretty significant impacts of that. What I'm imagining is that while that's happening, your guts are retching thinking about your kid's blood sugar being 200 overnight. And so you're trying. Am I right? It's hard to deal with, right? The knowledge. Yeah.
Kelly
At the beginning, for a while, I would just stay up until at least two or so. I sleep incredibly soundly. So having alarms, they would need to be loud for me to wake up. So the way I battled it was I just didn't sleep until after two
Scott
people with diabetes complaining about something everyone in the world wants, which is, I sleep soundly. Nothing wakes me up. Everyone wants that, right? Until there's diabetes. Diabetes. But I'm saying when you wake up in the morning and realize your kid's blood sugar is 185, all night longer it hurts. Right? I'll speak for myself. Like, it hurts me every time something like that happens. Yeah.
Kelly
Like, oh, there was a fail.
Scott
See, you see it as a failure. I see it as a health thing. Yeah, I understand that I sleep soundly and that sleeping is part of being human. Like, I don't think of it as a failure if I didn't hear the alarm. I think of it as. I don't know. Like, I think in my mind, I see my daughter's life as a timeline. And I feel like I Woke up in the morning to find out that, like a couple of. And it's just came off the back end of it. Yeah, I'm not saying that's true, like, apples to apples, but, like, I'm saying that that's how it makes me feel. Like, oh, we all slept last night. But Instead of being 86 when she dies, Arden's going to be 85 and 362 days. Like, do you know what I mean? Like, that's how it feels to me. I don't know if that's right or not. It's just how it impacts me. I don't understand why other people don't feel that way enough. So much so that they are motivated to do something about it. That's the part I can't. I can't get straight in my head.
Kelly
Yeah, well, and that's why we are trying these different things. I would like to give the kids the sugar pixel and try the vibrating under their pillow to see if that will help. We also just started the sugar mate. The phone actually wakes me up. Okay, so that's great for the lows. So we don't have any problems with the lows, but unfortunately with that one, it's only lows, not highs. We have taken since we came back to the States. We have taken different approaches to get this handled. I'm hoping at some point we can get the kids on Omnipod 5. We're struggling with the cost of it right now with our insurance versus what we had overseas. So right now, what's their management?
Scott
Right now?
Kelly
Cooper is on the Libre 3 plus and dash and Kayla is on dash and G7.
Scott
And what happens when they get high overnight? Is it from like a late night meal? Is it a miss on dinner? How are these things that are happening overnight? Like, where do you think they're. They're emanating from?
Kelly
It could be a mix of everything. We'll have a late night meal. It could be if it's burgers. We know about the late fat and protein spike. I actually was very excited. We had some tacos the other night and I knew I was ready for the spike and I actually managed it. It was the first time that I actually gave him the right amount. So that was exciting. But then it could be where Cooper is low and he goes downstairs. I just found out today. He. He says he got some milk. Well, then he also got some banana bread that I didn't know about. And then that spikes him. So it's not knowing exactly what he's having.
Scott
So, mom, I got low. But don't worry, I took care of it. I took care of it. But then didn't tell you about the 40 carb piece of banana bread he took with him?
Kelly
Yes.
Scott
Yeah. And why do you think that is? Does he not know? Does he want not want to be bothered? Do you think he forget? Do you think it's literally like he just forgets?
Kelly
I don't think he knows the actual impact of what's going on with it.
Scott
And if you told him.
Kelly
Oh yeah, I said, I just noticed. What. What did you do here? And he's, you said, you got milk. What else did you have? Oh, yeah, well, I did this. It's like, okay.
Scott
And then you do say, well, we need Ebolas for that.
Kelly
Yeah.
Scott
And he says, leave me alone, old woman. What does he say exactly? Like, does he ignore you? Why do you not push back? Tell me about that whole interplay.
Kelly
I don't think he has down knowing how much he needs to give himself for the food that he's eating. We are. One thing is he ends up having like school lunches every day. Every day. I know at 11:20 he really needs to get his pre bolus in. He forgets or he'll have it and it will still spike up. So it's like we have five chances of very structured time. We know when he's going to be eating every single day at lunch, and it's still a struggle.
Scott
How about a timer on the phone? What if you called him at that time of day every day?
Kelly
Oh, yeah, I text him. But even when he, he does pre bolus, he'll go low and he'll eat. And then it's an immediate spike. I'm. It's, it's the school lunches. They're garbage. Killing me right now.
Scott
Yeah, listen, it's again, not punitive. Incredibly hard. I believe this. After talking to adults over and over again, it's incredibly hard to remember to pre balls. It is, for some reason psychologically difficult to say to yourself, well, I didn't pre bolus, so I'll bolus more here because I'm not pre bolusing. I think there's something. I feel like I'm watching Arden and I'm realizing as she's older and I'm like seeing her interact with this all more as an adult, she doesn't mean to forget. And once she knows she forgets, she doesn't want to feel badly about forgetting. And then there's something simpler about ignoring than addressing. I'm sure there's some very simple psychology around this that I just don't understand. I think that they don't want to let themselves down. I think they don't want to feel like they're letting themselves down. I think they don't want to feel like they're letting other people down. But then you get back to the truth of it, which is you're hungry when you're hungry, and nobody thinks to be hungry before they're hungry. Do you know what I mean? Like, nobody goes, like, oh, I bet you I'm going to be hungry in a half an hour. I should start thinking about what I'm going to eat so I can bolus for it in 15 minutes. Like, that's just not how things work. Right? So you can set up timers to try to remind yourself. But, like, even with, like, with, like, thyroid medication, like, I realized that if Arden misses it for a day, I think she does that thing. You're trying to be perfect at something, and perfection obviously doesn't happen. And then people go to a reset. You ever notice when people say, I'm going to start a diet, they say, I'm going to start on Monday. Yeah, there's actually something about that. There's a psychological aspect of that that I don't obviously have any education, so I don't really understand. There's definitely something to that that that strikes a lot of people. And what I think I see happening is that whatever it is that tells you I will do it on Monday works on a micro level with this diabetes thing, too. Like, oh, I missed that. It's okay, I'll just get it next time.
Kelly
Next time.
Scott
Except there is never a next time because you miss breakfast, and that messes up lunch, and then it messes up dinner, and then it messes up overnight, then you wake up high and then it happens again. There's no reset in there. Like. And so it feels like there's this fairly natural human intricacy that I don't completely understand that's getting in the way of the structured need of diabetes that causes the whole thing to just run off balance a little bit. And I don't know if any of that made sense to anybody else, but that made an incredible amount of sense to me. So, yeah, I don't know how to fix that other than set a timer on your phone and pre bullish your meals, because if you get the first one right, then the second one's more likely to be right and you're less likely to have to treat or eat in the middle, which causes some sort of imbalance again. And anyway, when that person told me they didn't have insulin for three hours, I said, please never do that again. Like go to work with another cartridge or whatever your, whatever your pump would need so you could switch while you're like, you should always have this with you. And I said, like, look at all of the, look at all of the stress and anxiety and high blood sugars and guilt and shame that you've been through over the last six hours now because of this going on more time. Like, are you telling me that this is less effort than bringing an extra pump to work with you? And if you're sitting here telling me consciously, I know that's not the case, then you need to figure out you, God, your therapist, whatever, however you're going to figure it out, like, why didn't you go with a pump that day? Like, why didn't you take insulin with you if you knew all this was going to happen? And you hate the way it makes it feel. I don't know if it's self flagellation or I don't know, but I find it incredibly interesting. And I was, you know, looking for your input on it as well.
Kelly
So when it comes to the pumps, we have so many such limited amounts that for us we run it until after the eight hours. But I've instilled with them to always have a pen with them, so they have it. Sometimes they won't. One thing I really do love about Omnipod is that it is so simple to kind of go back and forth. So if they want to have an afternoon without it, then we can give them the pen. We still have a bunch of Tresiba. So there's times when if they want to go off the pump for a bit, we give them some placebo to deal with the long acting. But yes, for me, having insulin and backup is a non negotiable.
Scott
Yeah. Because the entirety of the issue between your children, the A1C that they have now and the one you're hoping for them to have for their health and their longevity and everything else, like it's all the human stuff, right. Like that's what gets in the way. It's all the. Just the frailties of people and where people drop the ball, like that's the stuff that's causing the issue. Right. Like if you could get people to bolus when you wanted to, things would go better. Right? Am I right about that?
Kelly
Most of the time, yes. There, there are times that I'm still. Yeah.
Scott
Yeah, you're not quite right on everything. But I'm saying like, because I'm telling you right now, if she just said to me, here, take care of this and I made all the decisions, I'd put her a 1C right back where I wanted. No trouble. It would be right there and the overnight would be better. But she's the one that has to live with it. She's the one that has to do it. I was in an event recently, it was a couple day event and they sent me over somebody, there's a lot of people with diabetes at this event. And they sent me over a person who newer diagnosed as a person in like their late 40s and coming out of a honeymoon. And he, he says, he gives me his pump and he's like, I, I just don't, like, I don't know what to do. Like I'm 220 all the time, you know, blah, blah, blah. And I just, I pulled out my phone, I actually went to my own website. I was like, let's double check your settings, you know. I said, how much do you weigh? And we looked and I said, well, this thing thinks your basil's a little light. And if you're still coming out of a honeymoon like this, you know the difference between 0.5 an hour, 0.7, 0.8 an hour is a big difference. I think your basal is a little light. So I said, if you explain my thinking, they changed their basal rate. And I said, okay, I'm like, now you got to get this blood sugar down. Like, you know, how much do you want to give to put this blood sugar down? And the person didn't know. So there's a thing I was at all day and I think I intersected him at. I was at a talk I was giving and it was after the talk, I think the talk was at 3 o'. Clock. So let's say it's like 3 o' clock in the afternoon and he's really scared, like he doesn't know what he's doing and he's seeing high blood sugars that aren't going away. He doesn't feel well. And I just said, look, let's do this. If I'm you, I bolus this much. I said, come find me in an hour. Came back in an hour. I said, okay, let's put in more like I worked his blood sugar down over about three and a half hours. I got it to 110, came over to me, I said, how do you feel? He goes, I feel like A little. I almost feel like I'm low. And I was like, yeah. I said, are you scared or are you, you know, do you actually feel shaky? He kind of couldn't tell. So I gave him a couple of carbs just to kind of make him feel better. And he said, I feel better now. I'm like, good. And we made a very small bolus. I think we put his blood sugar to like 87, 88. In that range, it was just slightly under 90, and it drifted back up to about 105. And then this thing goes on all night and, you know, 8 o', clock, 9 o', clock, 10 o'. Clock. Every time I walked past him, he hold up his pump. His blood sugar was super stable at that number. And I said, that's good. I feel like, you know, we got you down without making you low. We gave some time for that insulin to get out of you. It feels like your basil's holding it there. I said, you know, if it should drift up on you, put in a little more basil, but I think you've got it. And he said, thank you. It was very appreciative, which was nice, but not needed. And then the last thing he said to me was like, can you just stay with me and keep doing this, like, jokingly? And I was like, no, I'm like, you can do it. And like, you know, I explained it to him and everything, but I really did walk away because I haven't been that involved with Arden in a long time. And I really did walk away and think, like, oh, I could still do that for her. Like, I could do that. I think I could do it for anybody. Honestly, like, it's just about. There's a group of people around afterwards. And how did you do that? Because they all, you know, a lot of them have diabetes. And I just said, honestly, like, I want it to be more difficult. And I know it sounds boring because I say it over and again, but it's timing, amount, understand the impacts of your food. Don't stare at a high blood sugar too long. I'm like, that's pretty much it. Like, if you just do those things, this is what happens. You know, the next part of that is, is I don't know how to get people to do those things. You know, that's. That's the part I don't think we're ever going to come to a complete answer on anyway.
Kelly
Yeah, I mean, it's a huge shift when you start thinking you correct after 250 when you speak with people who really have it figured out. They wouldn't. They don't want to. They. They don't want to be over 200 ever.
Scott
Yeah, 250.
Kelly
And for us, it's like, okay, well, we're eating and it's going to spike. I'm working on stopping the spike. Let's round it out. I think we're definitely getting better, but it takes a lot of time. It takes a lot of communication, knowing exactly what they're eating. I take full responsibility for the nights. I need to get those figured out.
Scott
In the end, every bit of this is easier said than done. Okay. But I just find it to be true that you are putting out a lot of effort. I don't mean you. I mean all of you. You're putting out a lot of effort. I think you could use less effort if you put it into a different place. And I do think it probably falls under the heading of like, you know, work smarter, not harder. But you. But it's not as easy as that. You have to hurdle over the psychological stuff, too. Like all the, like, you know, feeling like you let yourself down or having that body grief that says to you, I wish this wasn't my situation. I don't want to do this. You know, there's a lot more. I'm not saying there's not a lot more to it. And I think that everybody. You know, I said this over and over again this weekend, and I say it on the podcast all the time. I don't meet people who I think are non compliant. I think everybody wants to do well. And there are just different variables and speed bumps that get into people's, you know, into their way along the line. But if you want to just talk about it dispassionately for a second, it's timing and amount. Understand the impacts of your insulin, of your food. Don't stare at a high blood sugar and pre bolus. You got a pre bolus. So, you know, work, put in effort now to save yourself a lot of trouble later. And by the way, take out the words that go to diabetes. That's. Those are pretty good rules for life, to be perfectly honest with you. You know, and in the end, what I got done saying to everybody, I was just like, look, get ahead, stay ahead. Like, get ahead, stay ahead. Like I said, jump on diabetes. Beat the hell out of it. Get it down on the ground and hold it by the neck and don't let it back up again. You stay in control of what's going on. Just get ahead of it. Stay ahead of it. So, I mean, that's again, all easier said than done. But is there anything we haven't talked about that you wanted to like? I did a fair amount of talking. So did we skip anything or anything we missed?
Kelly
One thing I wanted to talk about was our international experience for people who are going overseas. I know a lot of times they're asking about carrying their insulin. Everyone should always have a medical bag, an extra free medical bag that has all of their supplies. We moved overseas twice. That means that we brought everything that we owned for our supplies. And mostly the CGMs and the pods and the insulin came on with us. We checked needles and things like that, but those are the things that you can carry on for free. All the insulin for two kids. We were able to get that in one of those lunch boxes that Costco would have that expands. That was no issue. Have a medical certificate. You can get through the airports with water, even in Jordan. Every time we had to fight things like that. They weren't familiar with omnipods, so they would look at those for a very long time. But you just have to stay firm that no, here's the medical certificate. These are things that we need that you can get through those. We had a medical emergency in Italy when Cooper was diagnosed. A lot of people don't know. I didn't know until we were in France. And there was a duty phone for US Embassies. If there's a medical emergency, you can call the US Embassy, even if it's after hours, and they will help you. When he was diagnosed, we, they called the doctor in Florence at the consulate, the US Consulate in Florence, and he called the children's Hospital. When we got there, they knew we were going to be there. They said we need to make sure we take great care of you or my boss is going to be very angry or whatever it was. They made sure to help us really well. And you have that option with the embassies. They can help you for things like that.
Scott
You don't have to be in the military or anything. It's just being a citizen afford you that. Okay.
Kelly
And the employees of US embassies, they have the duty phone for a week and off hours. They're the ones that will help you through these kind of emergencies. So you have this, this service that you can use. I was incredibly thankful that we had that. It was of course during All Saints Day and everything was closed, but they still had people to help us also. Insulin, if you are overseas, a lot of times, if for us, our insurance they covered 90%. So when you're buying the insulin overseas, it's cheaper anyway. Could be cheaper than your copay. A lot of times we would actually stock up when we were visiting different countries. That's an option as well, I think.
Scott
Nice.
Kelly
That's pretty much it. When it comes to overseas stuff, do
Scott
you think you'll ever go back or do you think you're going to live here for the foreseeable future?
Kelly
I think we, we want our kids to have a little bit of roots right now. We didn't expect to go back to Jordan, but we really enjoyed having that family time, having the, the ability to travel on limited resources and having the experience, to experience cultures. Completely. Going to these international schools with kids of all areas of the world, it was really great. But I think for now we'll be here for at least through high school for Cooper.
Scott
Okay. Hey, do your kids speak a bunch of languages or did that not work?
Kelly
You'd think they would, but no.
Scott
Kelly's like, I thought that was going to be one of the things that happened.
Kelly
Yeah.
Scott
How about you? Do you speak any French?
Kelly
I speak a bit of French. I can get by, definitely in a restaurant. Absolutely. I'm really good at that. Otherwise. Yeah, we went expecting to be there for three years, added another year and then Covid added another. So we were there longer than expected. My daughter, she is in French 5 now. So, yes, she kept with it. My son, he went back to. He's doing Spanish, so he didn't with us. We were in the embassy community. We were going to English speaking schools, so it wasn't as immersive as I would have hoped.
Scott
A lot of native French speakers listen. So don't, don't whip out your restaurant French here because they'll definitely. I mean, I don't definitely judge you. I just want to say also, if it didn't really completely fit into this conversation, but if you had a parent or a grandparent who was in the Vietnam War. It's really interesting to pick apart Agent Orange and autoimmune. I pull up a lot of information for myself in case I needed it, which we didn't end up talking about, but it's worth looking into if you're interested in it. Birth defects, miscarriages, autoimmune issues. The difference between what the VA says is happening and what family groups and people who are living, you know, through this talk about. There's a bit of a disparity between, you know, the, the official stances from each. There seems to be a fair amount of organizations who are still fighting against this. There's a national birth defect registry, Children of Vietnam Veterans Health alliance, legislative lobbying. It's. It's interesting if you're. If it's something you're. You want to know more about. There's a lot. It seems like there's a lot of information out there that you could immerse yourself in. So. Well, Kelly, thank you. This was awesome. And it's always nice to be treated well by a woman named Kelly. So I can go tell my mom?
Kelly
Well, I appreciate all that you have to say, so thank you.
Scott
Thank you for listening, too. I mean, I heard you try to tell me a couple times and I didn't dig into it with you because it's Monday and I don't need you to be nice to me today. I'm still waking up. It feels like you listen to the podcast a lot, that you found it valuable. And I mean, that means a lot to me. Can you just tell me how you found was definitely.
Kelly
It was the. On Facebook groups all the time. And it wasn't until we returned that I had some time off to really get into podcasts. What it's done is change my perspective of things. There are some groups that a lot of complaining and that's diabetes and. And yours was very different. It took a while to. To get on board with it that, oh, these people all have it figured out. I'll never get there. It's definitely taking a while. But knowing that it can be done and changing your perspective of what is okay for your numbers and that you can get what you think is going to happen, it's. It's taking a while and I keep trying, but I really like hearing all the different perspectives of everyone.
Scott
I'm glad. Tell me what holds you back. Is it expectation? Is it complacency? Because you've been at it so long, like what. What keeps you from making like some big grand shift.
Kelly
I think one of the reasons is. Was thinking, oh, I'm going to try. I really wanted to try looping, but I'm not technical. It was too overwhelming. And then I was thinking I was holding out for Omnipod 5, and now that is out of reach at the moment. Once the kids got on the pump, because I was listening to you for probably two years before the kids got on dash. And the only reason we got on DASH was because people were upgrading to Omnipod 5 and they were giving them away. So that was the only thing. And that's. It sucks that a lot of it has to do with finances, but that's where we were at. Yeah, I felt like I could try harder once I had the dash because I know there's talk about. Yes, this is same for mdi, but a lot of it is. Is very geared towards having better control. Is you can have these, like stopping the. The basal is huge. Adding a little bit of insulin for corrections, it allows you to do so much more. So I'm getting there. I feel like with two of them, I don't know where my head's at. I can't focus on just one.
Scott
There's too much going on. Is that how it feels like it's too much going on to focus on all the things that you need to focus on at the same time?
Kelly
Exactly.
Scott
Got it. Okay. Well, I wish you a ton of luck. I don't know what to do about that. Maybe you could grow another head, two more hands or something like that, or, you know, make the boy help more. You could always do that.
Kelly
No, he. He does a lot. It's just. We hear it when he does it.
Scott
Just every. Just send him outside when he starts complaining, that's all. Just because I do think that there's probably a. A barrier here that if you break through it, what you're going to get to on the other side will be a lot more cruise controlly than what you're doing now. Does that make sense? You know, yeah.
Kelly
I'm just ready for it to all click.
Scott
Yeah. Hey, any chance your husband's name is Julius, so I can call this Agent Orange Julius or.
Kelly
No, Ken is not.
Scott
You could have lied, Kelly. Okay, thank you. I don't know. I don't know what to call this. That's okay. I think. I think that's the way we want to go now. I don't know what to call this, though, but that's okay. We'll figure it out. Thank you very much for doing this.
Kelly
I look forward to hearing it.
Scott
Yeah, I'll figure it out. Don't worry. I really do appreciate your time. Can you hold on one second for me?
Kelly
Yep.
Scott
I'd like to remind you again about the mini Med 780G automated insulin delivery system, which of course anticipates, adjusts and corrects every 5 minutes, 24, 7. It works around the clock so you can focus on what matters. The Juicebox community knows the importance importance of using technology to simplify managing diabetes. To learn more about how you can spend less time and effort managing your diabetes, Visit my link medtronicdiabetes.com Juicebox this episode of the Juice Box Podcast was sponsored by usmed usmed.com juicebox or call 888-72115. Get started today with us med links in the show notes links@juicebox podcast.com okay, well here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app. Go to YouTube and follow me me or Instagram TikTok. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't want to miss please do you not know about the private group? You have to join the private group. As of this recording it has 74,000 members. They're active, talking about diabetes. Whatever you need to know. There's a conversation happening in there right now and I'm there all the time. Tag me. I'll say hi. The Juice Box Podcast has been in production since January of 2015 and in that time we have amassed just a fantastic catalog of information for you. The Defining Diabetes Series Also Bold Beginnings Diabetes Pro Tips Small Sips Fat and Protein Algorithm Pumping Mental Wellness Ask Scott and Jenny Diabetes Variables Defining Thyroid After Dark the math behind Omnipod 5 pregnancy how we eat grand rounds cold win GLP meds the quick Start Guide. If you want to get going with the podcast but you don't know where to go. Diabetes Myths there's even a type 2 diabetes pro tip series. All of this is@juiceboxpodcast.com, go to the menu, click on Series and they can all be found right there. If you go to juiceboxpodcast.com lists you'll get all these great downloadable lists of all the different series so you can save them on your phone, keep them for later. Every episode is listed along with its episode number so you can go into Apple Podcasts or your, you know, wherever you listen to your audio and say you want to hear. Episode 1469 Steal a 1C overnight from the Small Sip series, you just go to the search bar, type juice box one word and then the episode number 1469. It should be the first return you get. If you have a podcast and you need a fantastic editor, you want Rob from Wrong way Recording. Listen, truth be told, I'm like 20% smarter. When Rob edits me, he takes out all the, like, gaps of time. And when I go and stuff like that, and it just. I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired rob@worldwayrecording.com.
Host: Scott Benner
Episode #1820: Orange Julius (April 9, 2026)
Guest: Kelly (Mother of two teens with Type 1 Diabetes)
In this heartfelt and wide-ranging episode, Scott Benner speaks with Kelly, a mother who has navigated raising two teenagers with type 1 diabetes, frequent moves—including long stints overseas—and a complicated family history marked by autoimmune disease, miscarriages, and connections to Agent Orange exposure. They discuss the emotional and practical realities of diabetes management, international medical logistics, psychological burnout, family dynamics, and the ever-evolving expectations of diabetes care.
Emotional & Practical Takeaways:
End Quote:
“Just get ahead, stay ahead. Jump on diabetes. Beat the hell out of it. Get it down on the ground and hold it by the neck and don't let it back up again. You stay in control of what's going on. Just get ahead of it. Stay ahead of it.” (52:32, Scott)
Resources Mentioned:
If you or your family face similar challenges, know that you’re not alone—the balancing act is real. Seek support, use available tools, give yourself (and your kids) grace, and keep pushing for the best control you can manage, while living a full life.