#730 A Family Thing
Hilary has type 1 diabetes as does her husband and their child.
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Scott Benner 0:00
Hello friends and welcome to episode 730 of the Juicebox Podcast.
Today I'll be speaking with Hillary who has type one diabetes is married to a type one and is the parent of a type one. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. If you're looking for the diabetes Pro Tip series, it begins in Episode 210. In your audio app. If you're a US citizen who has type one diabetes, or is the caregiver of someone with type one, please consider going to T one D exchange.org. Forward slash juicebox. Join the registry take the survey it all takes fewer than 10 minutes. It's completely HIPAA compliant. Absolutely anonymous. And your answers to easy questions about type one will help other people living with type one diabetes, T one D exchange.org. Forward slash juicebox. And if you're looking for community look no farther than the private Facebook group for the Juicebox Podcast Juicebox Podcast type one diabetes on Facebook. This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter, get the meter that my daughter carries at contour next one.com forward slash Juicebox Podcast is also sponsored by in pen from Medtronic diabetes. You can learn more about the ink pen right now at in pen today.com.
Hilary 1:57
My name is Hilary and I have had type one diabetes for 20 years now. I was diagnosed the second day of kindergarten. I married my high school sweetheart. And then about five years into marriage. He got diagnosed with type one diabetes. And then we have three children together and our middle child was diagnosed in April of 2020. With type one at three.
Scott Benner 2:26
Hell, okay, hold on. Hold on a second. You've had it for 28 years. But how old are you?
Hilary 2:32
I am 3434
Scott Benner 2:35
Second day of kindergarten. Yes. Like still didn't know where your copy was?
Hilary 2:40
Like, yeah, pretty much I went to I rode the bus for the first time on the first day of school and the second day I was in the hospital.
Scott Benner 2:48
Wow. Okay, yeah. All right. And then your husband got diagnosed at what age? What was that? Are you
Hilary 2:57
was no, that's my son's CGM. Tech's comp going off. Sorry.
Scott Benner 3:02
You really don't want to miss that.
Hilary 3:05
All right. My husband's got it under control. It's fine. But what was the question? was how my husband? He was new got the diagnosis like right before his 30th birthday.
Scott Benner 3:18
Okay. And, and your three kids, but one has t one, right? Yes. Okay. How old is he? He's five. How long? Has he had type one?
Hilary 3:31
It'll be two years in April.
Scott Benner 3:33
Okay. All right. Well, we have plenty to talk about the holy.
Hilary 3:38
There's a lot. Yes.
Scott Benner 3:39
How did I come upon you is my first question.
Hilary 3:42
Um, I have a friend who actually her son was diagnosed months after my son. And so we got in contact with each other and we're chatting. And she was the one that actually told me about the Juicebox Podcast, I'd never heard of it in my 20 Some years as a diabetic. And so I joined the Facebook group, but I haven't actually listened to any of the episodes yet. So you had posted on there about somebody who hasn't, who's part of the group but hasn't actually listened to any of the episodes. And so
Scott Benner 4:16
yeah, Hillary, you kind of screwed me just now. Because I'll tell you why. Because I was sorry, I was super set to talk to somebody who just didn't know the podcast, but was in the Facebook group. And then you just dropped an amazing story on me. Don't worry, let me bear down in my mind, we'll get it. Okay, I'm still gonna start where I meant to start though. Okay, sounds good. How is it being an adult who's had type one for a really long time? And then suddenly discovering this kind of information that you didn't you weren't aware of for so long? Is it uplifting or is it a little depressing or is it somewhere in the middle
Hilary 5:02
I think it's great that there is a platform that is so accessible for parents, or other type ones, but especially parents type ones, I think it's incredibly overwhelming to have a diagnosis like that, that changes your tire world. But when you don't know, or know very little bit about the disease, it's nice that there's a place for people to go and that they can find support, but also information that is very helpful. So I haven't actually listened to any of the episodes. But as I've become part of the Facebook group, and I've seen different links for various episodes, once the pod at this interview is over, I plan to listen to a couple of them. I'm really looking forward to those. But I've been trying to not listen to any preparation for today,
Scott Benner 5:54
if you've been holding out so you could still say you were like a podcast version when we got on.
Hilary 5:58
Yes, that's exactly what I've been doing. But anyway, I think it's great that you have it. And I know that my friend who introduced me to it has said wonderful things about it. So I, I have actually recommended the podcast to other type one moms, without actually listening to it myself. So
Scott Benner 6:16
I don't care how I get the recommendations. Hillary, that's fine. We do that. So we when she tells you about it, she told you about it because your son was diagnosed, not for yourself, right? That's correct. Okay. How would you characterize your overall health and management over the last 28 years?
Hilary 6:37
I would say for the first 20 years or so it was definitely in the higher range. As far as average blood sugar goes. We didn't have I didn't have a Dexcom until I was in my 20s. I didn't have a pump until I was 16. And I'm only now on like, closed loop system. So the first 20 years, I think I I didn't know a lot about the disease, I kind of just assumed that everybody ran higher that that was just the normal for type one diabetics. And you know, the lows were the scariest thing. So
Scott Benner 7:23
in your mind, you weren't doing anything particularly wrong. Right? You were protecting against getting a low? Yes. All right. And that was at the direction from your, your medical team as well, or just did that come from your personal experience?
Hilary 7:36
Um, I think my I think my parents were scared of lows too, especially without knowing without having a Dexcom in order to tell them what my blood sugar was at any given time. And, you know, like I said, I started kindergarten, the day before I was diagnosed. So that's a huge transition in most parents worlds. And, and now they have to spend a week at the hospital and then come back. And now they're trying to learn about the disease. And they're trying to educate my teachers and the staff about the disease. And so I think it was just as scary. And I think it was always let's try to stay a little bit on the higher range instead of on the lower range. And so that was just normal for me. Until Sorry,
Scott Benner 8:24
do you think don't get dizzy? Don't pass out was kind of the word of the day.
Hilary 8:29
Probably. Yeah. Were you used and then
Scott Benner 8:32
we're used. I'm sorry, we're using regular and mph back then.
Hilary 8:36
I was using regular and I think it was called Lin Tae was the long lasting, I can't remember. But I was on a sliding scale. I took two injections. It took one at breakfast and one at dinner. And yeah, that was it. And if I was if my blood sugar was high at lunchtime, then they would just, like deduct something that was like I wouldn't have milk with lunch. So to try to keep my blood sugar from getting any higher. Okay. And then if it was extremely high, my mom would sometimes come and give me a third injection until I went up to Florida with Humalog. Atlantis.
Scott Benner 9:15
Gotcha. Okay, so did you have that experience that some people talk about? Like you've had diabetes from such a young age that you don't think about having diabetes as an adult? Did it impact you differently?
Hilary 9:30
I think I think my husband and my son being diagnosed makes it more on the forefront of my mind now. So I feel like it was just kind of always a part of who I was for such a long time. And then it wasn't until we wanted to get pregnant that I went to the OB and she was like, oh, what's your a one C? And I think I was in the sevens or something. And she was like, You need to have an agency have like a 5.5 in order to get pregnant, and I laughed, because I thought she was joking. I was like, that's not realistic. Like, that's a non diabetic agency. And she was like, right, if you want to have a healthy pregnancy, and I, I was completely blown away. So a point where I like left and told my husband that we're gonna have to get a second opinion, like, we'll have to change your BS or a dog. It was it was definitely depleting to hear that because like I said, you know, my whole life, I thought that what I was doing was, was what was normal for a diabetic? I had never met a diabetic with a 5.5.
Scott Benner 10:40
Yeah, she wasn't saying she wasn't asking you to make it like 7.1 or 6.9. No, you were leaving one number and going two numbers away. And yeah, and that's that probably felt daunting. Hey, you know, as you're talking, it's occurring to me, I think you're the first person I've ever spoken to who got type one as a child, and then had a spouse get type one at after they were married? Like, I cannot genuinely remember this. May I ask, when you figured out he had type one? Did you figure it out? Or Did he figure it out?
Hilary 11:17
He was actually an active duty marine when he was diagnosed. And so he had gone to the doctor for something. And they were doing regular tests. And it came back that he had glucose in his urine. And he told me that and I was like, Oh, they must have gotten your urine mixed up with somebody else's. So then they did a blood draw. And they came back with his blood sugar being elevated. And again, I didn't believe it. And then I tested him on my own glucometer. And it was high. And I was like, Well wait and do a fasting tomorrow. And so then he woke up the next morning, and he was like, I can't remember maybe 215 or something. And I was like, Oh, my goodness, you have diabetes?
Scott Benner 12:04
Yeah. Did you curse in that moment? Or did you wonder like, how does this because I mean, I don't remember off the top of my head. I you know, the numbers ever changing. But I think it's only like 1.8 million Americans have type one. Like, how did you pick one? Like, could you see it in his face when he was little or something? Like, I mean, how did you do that? That's um,
Hilary 12:22
I don't know. It's it is really remarkable. I mean, I think it was. I don't know, God's plan is bigger than mine. So
Scott Benner 12:31
Hillary, it feels to me. Here's how it feels to me. Like you said, Yeah, I married my high school sweetheart. And he ended up being a serial killer. Isn't that crazy? Because that's how random that feels. To me.
Hilary 12:41
It was. That's exactly how I mean, it feels incredibly random to us to. And, and yeah, it changed our lives completely, because he was then medically retired from the Marine Corps. And so, you know, he, we were moving across the country, and we just had a life changing diagnosis. And he was needing to find a new career. And just like that, it was, it was yeah, all from one blood test. Well, I guess originally, they diagnosed him with type two because of his age. And then we have a friend who is an endocrinologist, and she was like, you should get him get these antibodies tested. I didn't even know that there were antibodies to test for. And so she gave us the list of the bloodwork to ask the Navy doc to pull or to draw. And so he got all that blood work drawn. And it came back that he was positive for the antibodies that he was diagnosed from type two to type one.
Scott Benner 13:41
That's insane. Like, it's if you would come on here and tell me, Hey, Scott, I don't listen to the podcast, but I get a lot out of the Facebook group, I'd say Okay, good conversation. If you got told me, you know, I was diagnosed on the second day kindergarten, I would have been like, oh, that's gonna be a good conversation. If you would have just told me that this thing with your husband happened, I would have said, wow, we're gonna have a nice time talking. But then your kid gets diagnosed. And so here's my question. Did you up your game when the pregnancy news came? Or when he was diagnosed, which came first?
Hilary 14:19
up my game as far as like my control of my diabetes, right? Yeah. Before we had our first child. I got my agency down into the fives. And then we had Lillian and then Henry. And then my husband got diagnosed, and then we had Teddy. And then yeah, we have maintained great agencies throughout all all of that. So the last eight years, I have been in the best health of my life. Wow.
Scott Benner 14:50
So was it one of those things that once you figured out you could do it that you were like, wow, I'm just gonna keep you were able to keep doing it after the babies.
Hilary 14:59
Yes. Are they It was, I think once I actually got down into the fives. And once I got past the laughing at the OB for telling me that that was something she wanted me to do I, I was like, This is how my body is supposed to feel like, this is what it feels like to feel good. Because I think I spent so many years running high that that was my normal, and I didn't know that I could, I could feel better, you know. And so it feels a lot better to be in tighter control. Yeah,
Scott Benner 15:31
when I talked, I tried to talk to people about all the time that they don't realize how quickly your body gets accustomed to a higher blood sugar. And you don't don't feel as well as you could. But you just becoming aware of that at some point, did you feel dizzy at normal numbers in the beginning?
Hilary 15:49
I'm not that I recall. Now I know that I was I could feel there was a difference. But I wouldn't say that I was like dizzy or shaking or anything like that. It's just compared to what I was normally running at. It was, you know, I could tell there was different. But
Scott Benner 16:05
So from your perspective, which I find very valuable. What's the management difference between a seven and a five?
Hilary 16:14
Oh, goodness, I was many years ago. Probably the biggest, I think the biggest thing is a Dexcom. For me. And then
Scott Benner 16:27
how to properly use it that makes it valuable to you.
Hilary 16:33
Just being able to see like, when you're starting to trend up that you should give a little nudge and give a little bit more insulin. Or if you start to see the numbers trend down. You can take one glucose tablet before it gets to be really low when you feel like you want to eat your whole kitchen. But I don't know.
Scott Benner 16:54
Well, Hillary let me say you're gonna love this podcast when you start listening to it.
Hilary 16:58
You really I've heard great things I can't wait.
Scott Benner 17:01
So I think it's it's fascinating that you just getting that information, just being able to see it in front of you. It's a shock, right? Like, you look and you go Wait, this is happening I had, I can remember when my daughter got to CGM and all the things that I didn't have any idea about, were just kind of put in front of me it was a little overwhelming at first. And then just like you I started thinking like, Well, why don't I stop it before it gets high or? Right? You know, why am I doing 15 carbs? Because they're bludgeoned at, you know, like that kind of stuff. And, and I realized how I was chasing the blood sugars constantly instead of being ahead of them. And it just all kind of kind of came into into focus. But I asked that I asked you the way I did, because a large amount of people, adults that come on here and talk about type one, at some point, will say, I didn't take great care of myself. I wish I would have done better, something like that. Until there's always in until until I wanted to get married until I wouldn't have a baby until my son was diagnosed. Like there's always this very interesting kind of human thing that it's it's somehow difficult to take care of yourself for yourself, but it's easy to take care of yourself for someone else. So true. Yeah, it's just very interesting. And so when your husband's diagnosed, is he knocked, I mean, besides losing his career, which I'm I'm having trouble even imagining. That's horrible. I interviewed a pilot one time who just, you know, in a swipe of a pen, couldn't do his job. But But when that happens to him, aside of that adjustment about career, did you having diabetes your whole life? Was that of any value to him? Or was it like he was starting over?
Hilary 18:50
Um, I think it was definitely valuable because we had dated since we were 16. And he was 30. So at this, at that point, you know, he had 14 years of growing knowledge of the disease before he even had it. And you know, there's been times when I've obviously been low, and he's needed to help treat me and stuff like that. So like, he understood a lot about the disease. I think when he finally started feeling like low blood sugars or feeling how some lows can just kind of knock the wind out of you and you're tired for hours afterwards or something. It wasn't until those kind of experiences where he was like, you would talk about how, you know, it really drains you but I didn't understand what that meant. Until I felt it myself. And so he knew a lot about it. But you know, obviously you don't know everything until you're actually walking in the shoes.
Scott Benner 19:55
When you describe your husband as a Marine you understand that I immediately not being a person Who could find anyone for any reason? Imagine that your husband is about six to weighs about 220 pounds and could pick my head and throw me across the room. Is any of that close to true?
Hilary 20:09
I think my husband will tell me that there are two types of Marines. And I think it's like, big and mean and lean and mean or something like that. So he is, he is six foot and probably like 170 pounds. A runner and he's fit, but he's a leaner fit. I guess.
Scott Benner 20:35
He's, I mean, he's, it sounds like he served, right. And he's, and so did he attack the diabetes with that sort of like, how does David Goggins put it? Like, who's gonna carry the boats? Like, did he like, it's gonna be me? I'm gonna do it. Like, did he have that energy for that? Or did you see it make him more human?
Hilary 20:55
Um, I think he. Well, I guess when he first got diagnosed, they said it was type two. So we started doing a lot of research about type two diabetics at 30. And it wasn't until we did the antibody testing, that we realized it was that he was actually type one. So he had done a lot of research from the get go of like, how did he get type two? And, you know, how does how can you manage this? Because I guess you can still stay in the Marine Corps with type two, I'm not really sure about all that. But anyway, he, he did take it very seriously, and just tried to learn as much information as he could about how to manage the disease and live with it as healthy as possible, in addition to everything that, you know, he already knew from my life experience. So yeah, he was very proactive.
Scott Benner 21:47
Were you able to be helpful to him? Was he open to your suggestions?
Hilary 21:52
Ah, sometimes, I mean, I would there's, I mean, that's still an ongoing thing, I guess, you know, when we start to see trends, and we make suggestions to each other about, maybe you should increase your basil or decrease your Basal or something like that. And, you know, there's some back and forth between things, right. But for the most part, we usually agree on most things. Okay.
Scott Benner 22:20
Do you follow each other on CGM? almost definitely. Okay. So you see his he sees yours. You both see. Yes. Okay. And we
Hilary 22:28
compete with our agencies because that's what any marriage would do, I guess.
Scott Benner 22:35
Yeah. Oh, for certain. Yeah, I Hillary I know you're not on for this reason, but I'm going to be completely just derelict if I don't ask you this question. You're the first person I've got to ask this up. I'm so sorry. You don't have to answer if you don't want to. What's it like having sex when you're both have type one?
Hilary 22:57
Oh, my goodness. That would be a conversation. That might be off line.
Scott Benner 23:05
Sir. There are a lot of devices clanking together. Are there low treats all over the room like like, give me the high level look at it. Nothing too personal. Hi. Don't know or you do not want to answer. That's fine. Don't feel pressured. Just tell me are some positions out of the question. Ah, oh, Hillary, you're very demure. Okay, I'm so sorry. Nevermind. Don't worry. Your wife of a marine you've got three kids. I didn't expect this. It's okay. Don't you're not judged, don't worry.
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Just I don't know how not to ask I have episodes of people who just come on and talk about, you know, like, really like what it's like and about kind of, you know, getting your blood sugar in a good place or getting a low dooring or how to treat each other and stuff like that. I just, I don't know, it just jumped into my mind all the sudden, I apologize for asking, how's that?
Hilary 28:03
It's quite alright. It's probably not something I would talk about on a podcast, but it it is, you know, obviously part of our life in our marriage and something that we navigate as well.
Scott Benner 28:20
Yeah. Okay. Do you guys all use similar devices? Or does everybody kind of have their own choice for a pump, etc.
Hilary 28:28
I was Medtronic for several years. Then I went to Animus. Then I went back to Medtronic. Then Henry started on tandem. And then I switched over to tandem as well. And so my husband's still on Medtronic, and hit once his warranties up. I think he's planning to switch to tandem as well.
Scott Benner 28:49
You guys all using control IQ. Yes. You like it? I love it. Yeah.
Hilary 28:54
I mean, I can't say enough great things about it.
Scott Benner 28:57
His algorithms are absolutely fantastic. Yeah, I, I know, the Omnipod five is coming out very, very soon, based on when you and I are talking not based on when you and I Not based on when this will actually go up. But um, it'll be out. It's gonna be out really soon. So I know, I just think that algorithms are for people who can afford the gear and who want to learn them. I think it's a it's just a no brainer, you know? Right. Yeah. Okay. So, I mean, I got to ask you, I don't want to make you upset. But how do you notice your son? I'm assuming you figured it out before too long with both you haven't type on right.
Hilary 29:39
Yes. Yeah. So I think I've, I think I dealt with guilt of not picking up the signs on my husband's diagnosis, and it still blows my mind that you had it and I you know, all the signs that in retrospect, obviously were there but I thought they were something out All right. So with Henry, it was, you know, I don't know, four or five weeks into the pandemic. So we were all at home. And I was reading him. Well, I guess I had had. There had been one day in October, when we had gone out to lunch. And afterwards, he was just acting off. And I was like, something's up. And I tested his blood sugar. And it was a little bit high, but nothing that was like out of the normal range for you know, non diabetic who just eaten. And so that was in October. And then in April, when we were all at home, I was reading him a book before lunch. And he had an accident. And I was like, very shocked that he had an accident. And my husband, who was working at home came into the room because it's about lunchtime. And I was like, hey, Henry. Henry just had an accident, I think we should test his blood sugar. And he was like, my husband said, Well, he's three, Hillary, that happens. And I was like, I know, but I just think we should test his blood sugar. And it was 374. And I gave him a low carb lunch, and I put him down for a nap. And I called my endocrinologist. And they were like, we can't do anything you need to call his pediatrician. And I was like, Oh, well, you're an endocrinologist. They're not an endocrinologist. Come on, right? Yeah, like, so I called the pediatrician. And they were like, Okay, you need to pack an overnight bag, and bring him in. And I was like, what? Why do I need to do that? Like, they're like, well, we need to test this blood sugar and testing for ketones. And I was like, Oh, well, I can use test his blood sugar when he wakes up from nap. And I just ordered Instacart from CVS. And, you know, the ketone strips will be here soon, and we'll test them when he wakes up. And she was like, No, me, I need to pack a bag and bring him you know, it's like, why do I need pack back, she's like, well, he's probably going to have to go to Children's Hospital today. And I was like, and of course, this is five weeks into the pandemic. And we have to type one diabetics in our house. And now a third type one diabetic in our house, and the hospital was last place we wanted to go. And so I, I eventually packed a bag and woke him up and took him in. And luckily, he didn't have ketones, and his blood sugar was still high. And so they called one of the local children's hospitals. And the pediatrician was actually really wonderful and advocated for us. Because asking if we needed to go to the hospital, and they eventually said that, because my husband and I both knew how to manage diabetes, and because Henry didn't have ketones, that we could just stay at home, and do all the training and everything virtually. So we didn't actually have to go to the hospital, which, in hindsight, I'm very, very relieved, because I've heard a lot of very traumatic stories about, you know, that week of diagnosis in the hospital for kids. And I remember, mine being pretty traumatic, too. So I'm glad that Henry didn't have to go through that.
Scott Benner 33:20
But listen, if there's no immediate medical issue, me, I mean, he's gotta be in reasonably good hands with the two of you. At the very least, they had to have felt a little comfortable about that. And then I would bet COVID to you know, they were probably looking for an excuse not to bring anybody into the hospital, honestly. Yeah. Did he ever have a honeymoon?
Hilary 33:39
Oh, yeah, he honeymoon for a while. He wasn't he didn't take insulin until maybe August. Oh, really? So April to August. Yeah, he was. We just did lower carb diet and was able to keep them in a good range. And then we started on Cuba log for, I think breakfast. So one meal a day in August, and then eventually it went to breakfast and lunch. And then it was breakfast, lunch and Lantis at night. Okay, I was gonna say around Christmas time.
Scott Benner 34:15
Oh, the Lantus didn't come till Christmas. That's correct. So you were just you were just shooting for meals, almost like a type two?
Hilary 34:22
Yeah, for a long time. I think his body was making enough with the lower carb diet that he was not having a lot of huge spikes. And at night, you know, he was still fasting. His blood sugar was like in the 60s and 70s. And because he wasn't on Lantus, they said we didn't need to treat it at night. So because he had no you know, we didn't do a dinner Bolus for a really long time. Right. So it was just there was no insulin on board except for what his pancreas was still making.
Scott Benner 34:53
Yeah, you know, if you're not using manmade insulin and nice 70 blood sugar while you're sleeping, it's kind of lovely. So yeah, Until you're worried about something dragging you down? Sure, it isn't something to worry about. Is there now or was there then? Or has there ever been any comfort that you can read on his face that you and your husband also have diabetes? Or does that?
Hilary 35:20
Don't know if it's comfort, but I do know that like, he, I think it's nice for him to feel more normal. Like he's not the only one. So he has his one friend, the mom that of the mom who introduced me to the podcast, and then, you know, we have other neighbors. Actually, there's quite a few neighbors in our neighborhood who have type one ironically. Yeah, there's a lady down the street who's been on insulin for over 50 years. And just at the end of the cul de sac,
Scott Benner 35:54
found that you went to kindergarten?
Hilary 35:57
No, but only an hour only an hour away. You know,
Scott Benner 36:00
I'm asking you like, is there like a cluster? I don't know. Interesting.
Hilary 36:05
Yeah, it is interesting.
Scott Benner 36:08
Okay, so. I mean, I don't know, I don't want to make you feel sad. But does it? Is it make you feel like it's your fault? Are you able to, like blame your husband? Because he is like, one just ignore it? Like, I think it's him. But I know when I'm guilty. Yeah. The mom guilt.
Hilary 36:29
The mom guilt surreal, for sure. I mean, but I would not change not having him. You know, like, of course, I love him. And, you know, I've heard a lot of people who, you know, who have type one who question whether or not they want to have kids, because, you know, they don't want to pass it on to them. But I don't know, it's, I can't imagine life without my babies. And so they're just such wonderful blessings. And that's just part of Henry's story. And, you know, something that he lives with, we all we all live with things and struggle with things. So that is just one of the things that Henry has to deal with. Now,
Scott Benner 37:12
I agree. I think that I mean, if you kind of reverse engineer the idea, right? Like you don't wish you weren't ever alive. And right. I mean, you're not looking, you're not looking to bail, because you have type one, there's no reason his life will be any, any more or less successful and you're able to be or your husband has been able to be. Yeah, it just it's just, you know, it happens. People blame themselves for things that aren't their fault. And it's hard to shake sometimes for some people. How about in your husband's family, other autoimmune or type one?
Hilary 37:45
Yes. So his mother's sister got diagnosed with type one in college, so adult, you know, as an adult. And ironically, she was married to a Marine. And so when my husband and I are dating in high school and college are like, look, we're like them, you know, a marine and a diabetic, then my husband got diabetes, too. So he will jokingly tell everybody that it's contagious.
Scott Benner 38:12
Oh, listen, if if anybody ever said anything that made me think it was contagious, it's pretty much get to class. I did just put up an episode with a young girl who has she she is one of eight brothers and sisters, and six of them have type one.
Hilary 38:31
I saw that that's one of the episodes I really wanted to watch. And so I'm going to watch or listen to that.
Scott Benner 38:37
You really don't want this podcast, you don't you don't get to see it. You only don't get to watch it. Well, that's just that's really crazy. I mean, it just is how about on your side?
Hilary 38:46
Now I'm the only only type one my mom said that her grandfather, they used to talk about how he had high sugars. So she thinks that maybe he had type one and nobody knew what it was called. Or maybe just, you know, health was categorized differently back then. Or people didn't talk about it as much. I don't know.
Scott Benner 39:05
About like celiac, hypothyroidism, rheumatoid arthritis, anything like that.
Hilary 39:11
Ah, I have hypothyroidism. My mom has hypothyroidism.
Scott Benner 39:15
Are you guys? Hashimotos or just hypo? Is it just hypo? Hypo. Okay. How do your other two kids look scared? Are they somewhere right now? Like holding up a Horcrux or something like?
Hilary 39:28
Yeah, we got our eldest tested for the antibodies through trial net. And so after Henry was diagnosed, and hers came back negative, so we're hoping that that doesn't change. You know, she has she knows a lot about diabetes for her six year old who doesn't have the disease. So you know, she will talk about it and you know, how white blood cells attacked things, you know, the pancreas and all this stuff and I And so, you know, I'll ask her questions about it. And she's like, so that's, you know, that's pretty cool. And I was like, You think diabetes is cool? And she was like, Yeah, it's pretty cool. But I don't want to have it.
Scott Benner 40:12
You know, I did talk to one adult once, who didn't have it when everyone else in our family did. And they felt like they wanted it when they were a kid. They felt like they were like, it's a weird idea that to consider, but they felt on the outside of the inner circle. Yeah, I bet. Yeah. That's crazy. I mean, that stuff happens when you're raising kids one way or the other. But, sure, you know, you wouldn't think on something like this. Just really fascinating. Wow, okay, I let me recenter myself, give me a second. Hillary, you, you dropped a lot on me. I was just like, Alright, hold on. I was planning on asking you like, what's it like? Well, I'm still going to ask you, how about that? Okay, why? Why? Why philosophize about it as an adult living with type one, right? And for having it for so long. When a friend comes along, even though it's a friend and says, There's a guy, I think you should listen to him. He doesn't have diabetes, but he's going to talk to you about it. Do you? Does that rub you the wrong way?
Hilary 41:15
Oh, no, not at all. I mean, I understand that your daughter has type one, correct? She does. Yes. Yes. So I mean, you've you're living with it too, even if, you know, the one having it. And so, I mean, I think there's, for me, personally, having diabetes myself, was easier. It's harder being a parent of a type one diabetic than it is being a type one, myself. And so it's, you know, in the last year and a half, two years, it's been completely different than it was before.
Scott Benner 41:54
Yeah. Would you talk about that a little more? What makes it different and more difficult?
Hilary 41:59
I don't know. I think it's, for me, I know what it feels like when I'm low. And I know what it feels like when I'm high. And I know that like if I choose to eat, you know, that pizza at the birthday party, and then I go high, like that was the choice I made. And I I can weigh the risks of is it going to be worth it if I don't Bolus just right for it. Whereas he's five. And of course, he wants pizza. And of course, he wants to be at the birthday party. And if I don't do it, right, then, you know, the mom guilt of feeling bad that like, Oh, now he now he probably feels like crap. And it's my fault. But you know.
Scott Benner 42:43
And so, a lot. And also, I'm sorry to cut you off.
Hilary 42:47
You're fine. Yeah. And also just the lows of like, he is not going to wake himself up in the middle of the night to treat a low. So you know, making sure that I have all the alarm set at the right volume. And you know, that I've given the right amount before he goes to bed, and all that kind of stuff. It's like,
Scott Benner 43:09
do you feel how do you affect your pressure because you feel like you could be incapacitated when he needs you.
Hilary 43:18
There are definitely been times when both of us have been trending low. And you know, my whole time as a mom, you hear a lot of moms who talk about like, I didn't have time to eat today because I was taking care of the kids. And I never I could never say that. Because if I need to eat, I can't take care of other people if I don't take care of myself first. And so I've always been, I guess a unique situation as far as a mom of young kids, because I've always had to put myself first. Because if I don't, I can't take care of them. And so there have been times when both of us have been training low. And I'm like, Okay, I have to treat me and I have to treat him you know, or what happens if one of us does become you know, if I'm not able to treat I mean, I'm obviously catastrophic sizing and you know, this is anxiety talking but, you know, what's my do I need to teach my six year old how to call 911 and what to tell them and, you know, do I need to teach her how to use glucagon or back see me like,
Scott Benner 44:22
hey, 911 It's a show over here. My mom is walking in circles. And my little brother is just flopping over. I need help.
Hilary 44:32
I mean it Yeah, it's definitely a real thought this come to mind. And
Scott Benner 44:40
you know, just did you teach her how fast
Hilary 44:43
I showed? I haven't yet. My husband now predominantly works from home. So usually there's no two of us at home to Okay, yeah, to do all the things and so, but yeah, I mean it's there are definitely times when My husband coached Henry's baseball team this past year. And it was one of those things where if I'm not at the game teaching Henry, like, if dad ever were to pass out, you know what to do, like, you know what to tell people, right? Like the daddy has type one diabetes. And you know, if you'd have, if you ever don't feel well, you need to make sure you tell people that you have type one diabetes. So just those things, those conversations that the extra conversations you have to have that you don't want to have, but just so that people are aware, in case there's an emergency, right?
Scott Benner 45:34
Yeah, no, it train it builds. I mean, if I can give you the benefit a little bit of my experience. Sure, I understand the pressure. But it builds slowly. You know what I mean? Like you have the conversation once they don't need to completely understand it the first time it gets a, it's a really slow progression. It's like teaching somebody about type one. It's just, I don't think it's reasonable to think that you're going to tell somebody the first time hey, listen, you have to Pre-Bolus these meals and expect they're gonna do it every time for the rest of their life. You know, a lot of parenting, whether it's diabetes related or not, is saying the same thing over and over again. It's just it's a lot. It's a big part of the job, you know? Yeah. I mean, if your husband starts talking about a different sport, during baseball practice, that might be a good like, indicator for your son. Just, you know, Daddy told me to go out for a pass, but I'm playing first base, so I figured I figured something was wrong. I love that your son plays baseball, by the way my son does, too. Oh, really? Cool. Yeah. My daughter has type one. She's 17. And she Okay, she was diagnosed when she was two. Oh, wow. Yeah. My son is 22. He's a senior in college. And he still plays baseball. That's awesome. Yeah. So, but he has actually he has Hashimotos. But at this moment, not nothing else. And he did not have antibodies when he was tested by trial net, about 10 years ago, either. So we always can just kind of quietly cross our fingers about all that stuff.
Hilary 47:00
Yeah, same. We're still waiting for our two year old to get old enough for I guess they recommended that we wait until he's a little bit older to do the trial on it. So yeah, it's a lot.
Scott Benner 47:11
I mean, are you okay? I never asked you.
Hilary 47:16
Right now I'm okay. Because all of our numbers are looking good on the Dexcom.
Scott Benner 47:21
What happens when it gets upside down? Does it derail a day ever? Or derail an hour?
Hilary 47:28
Define derail?
Scott Benner 47:29
I don't know you were gonna go to lunch, but now you're eating at a Wawa instead? Or something? I don't know.
Hilary 47:36
I don't know. We always have, like, glucose tablets everywhere. So usually, like I said, we try to, you know, prevent too many lows from getting too low and catching early. So we don't have to, you know, stop somewhere else before. We're going to eat a whole meal somewhere else. But yeah, I mean, there's, there are definitely times when you know, at Christmas time you eat too many things, or they shouldn't or I shouldn't say shouldn't but too many things. And you didn't Bolus correctly for them. Or, you know, go to a birthday party and didn't quite guesstimate. Guesstimate the pizza, the cake. Yeah, or the periodic candy, or whatever it is. So, but usually, we try to like, you know, do the, the foods that we don't normally eat, we try to do those in the middle of the day, try to give us some time in the afternoon to catch and, you know, make sure everything's back on track before going to bed at night. But
Scott Benner 48:39
that's ultimately that's super smart. Just don't, don't tackle something you're not good at or something you don't understand. At certain times a day like before bed is just the big right. Have it earlier in the day. Give yourself a chance to get out of it before bedtime. That's exactly that's a that's an angel level move there.
Hilary 48:56
Yeah, we don't ever go out to dinner if we're gonna go out for lunch.
Scott Benner 49:01
That's super smart. It really is. made me laugh with that. Hey, I don't I don't want to know exactly where but are you and I? We live near each other. Are you in the Northeast ish?
Hilary 49:12
I am in Virginia, Virginia.
Scott Benner 49:14
I heard you say home like it was a little filly.
Hilary 49:19
Oh, nope, sorry. That's
Scott Benner 49:20
okay. I just why I guess that's all you did the home you went home. And I thought maybe she lives around here. That's excellent. So alright, so what are your son's is he in? He's in school now?
Hilary 49:36
He is in pre K he'll go to kindergarten in the hall.
Scott Benner 49:39
Okay. And will it be in person?
Hilary 49:43
Yes, I think we are. We are actually meeting with the admin of the school on Friday to see what they're comfortable with as far as management of him at school next Hear? And if not, then I will probably homeschool him for kindergarten.
Scott Benner 50:04
Well, it isn't a public school. No, it's not. I was gonna say it doesn't matter what they are comfortable with if it's a public school, yeah, yeah. Well, I, I understand the desire, like you're worried that somebody won't want to give him insulin or? Yes, yeah, I want
Hilary 50:24
Yeah, I know, there's a lot of private places that won't administer any drugs whatsoever, which I understand that that's a liability. But I know a lot of schools have policies about cell phones, and you know, right. Well, also all the things so I only want to send him somewhere that is, you know, totally comfortable with it. I wouldn't want anybody to do something. Or accept him, I guess, and not feel fully comfortable. Yeah. With doing the things that need to be done.
Scott Benner 50:58
Yeah, I wouldn't want somebody who's gonna flinch in the wrong moment. You know what I mean? I'll tell you one of the most popular episodes of the podcast is like the fourth one, it's called texting diabetes, because the day I realized that texting was a very important diabetes toll was a was a beautiful day around here. Like, you know, I just I recognized one day, like, I can imagine what's happening to my daughter, she doesn't actually need to be with me, for me to still kind of like, know where she's at. If I know the insulin she's had, I don't know the food she's had, you know, reasonably speaking, I know where her exercise has been. I don't physically need to be with her to make decisions. And Arden. I know. She hasn't been to the nurse since the last day of second grade.
Hilary 51:41
Wow, that's awesome. Yeah, I that's part of the reason why I might homeschool next year, because I'm like, if I can teach him to read, or at least read enough that I could text him on an Apple Watch. Maybe he could just manage it all on his own. But I don't know if that's too much to ask of a seven year old.
Scott Benner 52:00
I don't, I don't know when he'll be able to do it. But functionally, the idea I love, I think you're yes, you're smart. It's gonna it's gonna be a big deal for you. Because, you know, it just allows decisions to be made in the moment. There's no waiting, there's no I gotta walk to the nurse and wait for the kid in front of me his knee to get fixed. Like, you know, it's, it's very immediate, you avoid a lot of spikes that way, which of course, avoid no lows later. And, yeah, it's just really cool. You are really gonna like this podcast, I can't wait for you.
Hilary 52:30
I'm excited. I remember when I was in elementary school, that I couldn't even test my blood sugar in the classroom. And because I didn't have a Dexcom. Anytime I felt off. As you know, an elementary school aged kid, I had to be able to tell the teacher I don't feel well. And then I'd have to have another student escort me to the clinic so that I could test my blood sugar and then determine whether or not they actually needed treatment one way or the other. Yeah. And so it's crazy to think about how my parents had to manage my diabetes, just you know, 20 years ago, as opposed to me right now looking at my phone and seeing exactly what my blood sugar my son's blood sugar is. The whole time. He's at preschool
Scott Benner 53:15
Arden Bolus during her LSAT. So Oh, wow. Yeah, just they, they just, we had all the provisions put in place. And so I sent a text that said you need insulin. And she showed the phone to the proctor. And the Proctor's paused her test. And Arden gave herself insulin that proctor asked if she was ready to restart. And Arden said yes. And she sat back down, they restarted her time, and that was it. Yeah, if you're, it's pretty easy. You know, it's, it's obviously helpful that you really know what you're talking about. And you can watch it from afar. I mean, I can't say enough. Dexcom is a sponsor, but, you know, between the the device itself and the sharing features, just crazy, you know, that 10 people can follow your value is just, I mean, it's wonderful. You know, this. Yeah. I mean, you get so wonderful. You might meet a nurse one day even who has a grasp of it, and some people have their nurses following during the day and yeah, helps the kids in class and everything. Yeah, your your your son's gonna grow up in a different world than you did with type one. That's for
Hilary 54:22
sure. already. It's amazing. Oh, my God. Yeah. Yeah,
Scott Benner 54:25
the algorithms alone are insane. I mean, the sleep that you got back from an algorithm, right? Crazy.
Hilary 54:30
Yes. Uh huh. Yeah. And for myself, too, like I never go low anymore. My daughter's
Scott Benner 54:36
not feeling well today. And something not diabetes related. Right. So she went to bed last night, I don't know like 11 o'clock. And. And her blood sugar has been so she's still asleep. It's like one o'clock in the afternoon and I'm just looking back 12 hours like Arden's blood sugar hasn't been over 120 or under 85 In the last 12 hours. She's awesome. You know, it's just if she if this happened and this has happened in the past, you know, before, even with CGM, I would probably be in there like Temp Basal Inc trying to avoid lows and, you know, trying not to stick juice in her mouth, but maybe having to and instead that algorithm just like it just, you know, it's amazing. It's really life changing. So, yes, yeah, no kidding. All right, listen, Hillary, like, I'm not kicking you off. I'm just I want to make sure I don't miss anything like, is there something about your life that I don't know to ask about? Because you have such a unique situation that you would want to?
Hilary 55:40
I don't know. I had one near death experience once I was pregnant. My third time.
Scott Benner 55:50
Yeah. Well, you wouldn't talk about the vaccine, but you'll talk about this. That's good. I'll think I'll wait a minute. So it was this diabetes related? It was yes. Oh, my God. All right. Oh, let me i gird my loins. I don't want to cry. Hillary. It's the afternoon here. And I haven't had lunch yet. So no, no, don't Don't be sorry. I just sometimes, sometimes I cry. That's all. It's not a big deal. I won't let you know. I'll push the microphone aside. So which which child were you pregnant with?
Hilary 56:17
I was pregnant with my third. Okay, so it was before Henry was diagnosed. But it was shortly after my husband had been diagnosed. And he was. So I, I love the Dexcom. And I will never not wear my Dexcom ever again. But I started wearing a Dexcom when I was trying to get pregnant with my first and so that I wore it through the whole that whole time period and through the whole pregnancy. But then typically after each pregnancy, I would take it off and not wear it anymore, because I felt like you know, I didn't have to be monitored that closely because I wasn't carrying a child. And so when I got pregnant with Teddy, I had an order in for a Dexcom because I knew I need to get back on it, but I didn't have it in yet. And so I think I was like seven weeks pregnant maybe. And I had taken the Lillian and Henry to a playdate in the neighborhood. So I was pushing the double stroller. And we had a great playdate. We walked home, and the two kids went down for naps. And I was in the first trimester of pregnancy. And I was tired too. So I was like, I'm gonna take a nap too. And I fell asleep. And I woke up to like eight EMTs in my bedroom. And so my husband was being transitioned out of the Marine Corps. So he came home earlier than he would typically on a typical workday. And when he walked in, he heard our Henry was in the crib. And he was crying. And my husband thought, wow, she must be really tired that she doesn't hear the baby crying. So we went upstairs and got him out of the crib and came back downstairs. And then a little while later, he started hearing, you know, loans coming from upstairs and just assumed it was our three year old daughter waking up from her nap and wanted attention, somebody to carry her downstairs. And when he walked into the foyer to look up the stairs, he realized that the moans were coming from the master bedroom and he ran upstairs and I was unconscious. And I guess I must have been seething when he was hearing the moans. And he gave me the glucagon called 911 and tested my blood sugar and I was 17. And so the EMTs took, you know, eight minutes or so to get to the house. And then they put me on IV co strip. And I eventually came to I remember Henry was at the window, talking to one EMT about the fire truck in like front yard. And then another EMT had like blown up one of the rubber gloves and was using it as like a puppet to entertain Lily. And then Nick was sitting right next to me in the bed holding my hand. And I was like I'm feeling very overwhelmed right now. And he was like, It's okay, you're okay now. And so that was my near death experience. And then, so I will never not use a group or a Dexcom ever again. But the crazy thing about it is because I had diabetes for such a long time. And I've you know, had been in such good control for so long. I had let my glucagon
Scott Benner 59:50
expire,
Hilary 59:51
expire. So the glucagon that was used to save my life was actually my husband's and if he hadn't just been diagnosed with type one within that year, he wouldn't have had it.
Scott Benner 1:00:02
Okay. You know, it's so interesting, I appreciate you sharing that. But it's so interesting to listen to you talk about this because you're a person who's lived in both worlds now with diabetes. And I think it's just incredibly valuable to hear you talk about it. Because there are a lot of people like you who have lived with it for decades who think, like, I don't need this technology, I'm fine. Like, or don't tell me what to do. I don't need some guy telling me to Pre-Bolus Or do like that kind of stuff. This stuff is all super important. And you should, I think people should see it as lucky that they live in a time where the technology exists, that they can see the speed and direction of their blood sugar. It's just the big deals, you know, but it is really interesting, because as you tell the story, you know, the story starts with kind of like, you know, oh, gee, Hillary, who's like, I don't need to CGM. That's just for me. That's just for making babies. You know, and I don't want to be tracked by the man. You know, and then suddenly, you're like, yeah, no, I know, trust me. I've spoken to a lot of people a diabetes, probably like over 700. And so yeah, I know, the vibe, like I know how it happens. And I know the kind of like, animosity that builds up inside and that sort of like, I can do it, and I don't need help. And I've got this, it's almost like it's armor that you needed to get through that part. But you live in a different time now. And you're still swinging your sword of dragons, and they don't exist anymore. That kind of thing? Yeah. Does that make sense? You know,
Hilary 1:01:36
yeah, I mean, I didn't get a pump for until I was 16, even though I was diagnosed it, you know, five, because I didn't want to be attached to a machine, right. And then it's like, once I got it, I was like, Oh, this is life changing. Like, I wish I'd done this sooner. And then the Dexcom after it saved my life, especially after it saved my life. I was like, Yeah, I will never not wear this. And my child would never not wear this. And, you know, for me, also, it was the fact that like, not necessarily that I didn't need it. But like I just before I wanted to get pregnant. The first time, I just didn't know that you could live a life and better control. I think I just thought that this was what was the norm. And, you know, now you hear about all of the long term complications, and you know, all those things can be very scary. But as a word of encouragement that I do tell a lot of other type one moms is like, for 20 years, I was not in tight control. And now I'm 34. And in the best control of my life, and I get bloodwork done. Last time, I saw my endocrinologist, she was like, if I were to show your bloodwork to one of my colleagues and not tell them that you were type one, they would have no idea. So you know, there is there is hope for you know, anybody who feels like, Oh, this is just a who have just accepted that this is the way it is like it doesn't have to be that way like you can, you can get to a point where, you know, you don't have to feel such great swings are the highs and the lows. And you know,
Scott Benner 1:03:21
yeah, Hillary, my daughter is a one sees man between five, two and six, two for eight years, and she does not awesome does not have any diet restrictions. So that's awesome. Yeah, it's awesome. It's just, it's the stuff I figured out and then the stuff I put back into the podcast, so other people could hear about it.
Hilary 1:03:38
That's awesome. Yeah, my husband and I got our agency results yesterday. And we were usually he beats me by like, a 10th or two tenths of a point, but we tied at 4.9 yesterday. So
Scott Benner 1:03:50
are you guys low carb?
Hilary 1:03:52
Um, I wouldn't say yeah, we're lower carb. I wouldn't. We're not keto by any means. I mean, we try to be we're about 80%, I would say plant based, so. And if there is a lower carb option, or like, we definitely substitute, you know, wheat products for white products whenever we can. Whenever it makes sense, but like, we enjoy going out to restaurants and eating whatever ordering whatever we want when we go out to restaurants and there's like no stipulations on what that is. But obviously, we try not to do that every day. for lots of reasons.
Scott Benner 1:04:33
I think honestly, I mean, you don't know me, but I'm a very much a whatever works person. I just think that people should understand how insulin works. They should understand how to use it, and then they can apply it to any style of living they want but it's a travesty not to understand the insulin and then just try to dive into things whether it's plant based or high fat or what however you're going to eat, you know,
Hilary 1:04:55
sure, yeah. When my husband was diagnosed with type one, it also led occurred to him having high cholesterol. And so then obviously, that's a concern because type one diabetes has, you know, long term risks with heart disease and stuff like that. So cholesterol just adds another layer of to that. And so we went PLANT BASE to try to, or mostly plant based trying to lower his cholesterol, which he successfully has done. So it's really
Scott Benner 1:05:25
remarkable. Did the whole family go along with you? Or just the two of you?
Hilary 1:05:29
Yeah, we're mostly plant based. I mean, I still put cream in my coffee every morning. And, you know, when we make jellies and stuff, the kids usually put cheese on it, because, you know, it's more appealing to them that way. But we we try to
Scott Benner 1:05:47
what sounds like you're doing your kid. Thanks. Yeah, it sounds like you're doing amazing. I'm now realizing that your friend who suggested the show to you was really just suggesting it to you because you became the parent of a child with type one. Yeah, I mean, were you at all.
Hilary 1:06:05
I didn't have support groups, or, you know, anything like that growing up. And when Henry was diagnosed, one of the first things that the Children's Hospital and the endocrinologist asked us to do was to join a support group. And so I went on Facebook, looking for support groups, but I didn't find the Juicebox Podcast, because I was just searching for diabetes support groups in the search window, and then when Anna told me about, you know, the Juicebox Podcast, like, I don't know, I'm not familiar with that. And so do you
Scott Benner 1:06:40
listen to any podcasts? No, not really. I'll be your first That's lovely. I like the way that yes, that way you your focus will not be drawn away by others. Like, you know, I don't need you wondering what Dax Shepard is thinking. You know what I mean? That's exactly your competition. I asked you Hillary in your life. Have you ever wondered what Dax Shepard thought of anything? No, no, excellent. It's funny. I just randomly picked up popular podcasts out of my head. That's all. I really can't thank you enough for doing this. This was this was wonderful is way more than I expected. And, and I'm really grateful for you sharing the story. I think that this went in a direction that I didn't plan on, but I think it's just incredibly valuable. So in my mind, hearing a person whose, like I said earlier lived in both worlds, is, is important for young people, and older people who have type one and even parents, you know, it's, I think that maybe one of the most important things you can do if you're living with diabetes, is to stay aware of current treatments. And technology. Don't change just for the sake of changing like you don't I mean, like, don't just be like, Oh, I'm tired of my car being blue, I'm gonna get a white one now. But when you see something that's a leap, and you should leap along with it, because you do not want to be in a position ever, where you look back and think, Oh, I've been doing this the old way for 10 years. And other people, other people are having better health easier times. More happiness, you know, a lighter existence, because of some of the things that this technology can do. I really, I really appreciate you saying all this. And you're
Hilary 1:08:27
welcome. Thanks for having me. Of course.
Scott Benner 1:08:28
Are you still nervous?
Hilary 1:08:30
Um, no, I think I'm okay. Okay.
Scott Benner 1:08:33
I did. Okay, I got you calm. I almost screwed up with the sex thing, Hillary, but I backed out of it pretty quickly. I shouldn't you know, I mean, I should have known. I didn't know you. Well, you haven't heard the podcast. I was like, I mean, how am I not gonna ask you know what I mean?
Hilary 1:08:50
Fair enough. It's a fair question. I
Scott Benner 1:08:52
love I love that. You don't want to even revisit it. Like in hindsight, this is I like you a lot. You're delightful. Well, my best to your husband and your son. And I would I if I was those kids. I wrapped myself in a hermetically sealed bubble, just in case you are patient zero.
Hilary 1:09:13
Know. That's crazy. Okay, and it's crazy how since I've heard since Henry's been diagnosed, how many more type one diabetics have come into my life. So
Scott Benner 1:09:27
do you think do you think that's like when you buy a Chevy pickup and suddenly you see Chevy pickups everywhere or? You're making
Hilary 1:09:33
no I have no idea I think I never thought to really advocate for or like, bring awareness to this disease before because it was just me. And then I think as time has gone on, and now that Henry has it, I don't want him to go around feeling like there were definitely times when I tried to, you know hide my poor high E not tell P burn an interview that I have type one diabetes or, you know not tell the coach I'm trying out for a team or whatever it might be. And I just want him to feel like, he doesn't have to be ashamed of it. And the more people know about the disease, the more normal it will be for him and other kids as they grow up with it. So I think since he's been diagnosed, I have felt more of a responsibility to bring awareness to disease. And I think because I do talk about it a lot, that more people are like, oh, yeah, you have diabetes, you should, I should introduce you to my friend, Hillary. She also has diabetes. And so
Scott Benner 1:10:40
if I don't, I'm sorry, if I gave you a magic wand, would you go back and find yourself and tell yourself that stuff? Like just tell them it doesn't matter? But like, don't hide? Do you think it's that important? worked out okay for you. But now you're just yeah, for your son.
Hilary 1:11:00
I think it worked out fine. For me in the long term, I think I've learned to, you know, tell the people who were closest to me and like, teach them about it and know what to do in case of an emergency or whatever. But
Scott Benner 1:11:17
I was just wondering, like, I'm basically digging to find out if you have any psychological issues from growing up with type one? Oh,
Hilary 1:11:23
I'm sure Yeah. I think overall, it's, it's definitely made me a stronger person. I think that I
am able to do a lot of things because of the adversity that I had growing up with disease. But
Scott Benner 1:11:43
you know, do you have a second, can I ask you one other question? Sure. Okay. Matthew has to speak for him. But I'm sure this is a conversation you've had, in your husband's opinion, could he have continued his life as a Marine with type one?
Hilary 1:12:02
My husband, he believes that all Marines should be combat ready. And I think he understood that. You know, he wouldn't be able to fully serve in the same capacity with type one diabetes. So
Scott Benner 1:12:21
there's a job he would have done. But he he when he thinks of being a Marine, he thinks that all hands on deck, like if I have to go I need to be able to go. And
Hilary 1:12:30
yeah, I think that that's Yeah, I think that's I mean, I can't speak for him. But I think that that is overall the feeling that he had. I mean, he understood when he got the diagnosis, that that would mean that he would be separated from the Marine Corps. And he understands
Scott Benner 1:12:49
how long was he? How long was he in? Eight years? Was it hard for him? Yeah, yeah. I take your point, though. You can't be breaching a building yelling. Nick needs a cookie. Yeah,
Hilary 1:13:03
timeout. I need a glucose tablet. Everyone stopped.
Scott Benner 1:13:05
My blood sugar's a little low. We can get back. Just a minute.
Hilary 1:13:10
Right. So I'm not here. Yeah. I mean, he definitely has a you know, I think it's, I think it's also harder for him being diagnosed at 30, than it was for me to be diagnosed at five, because I don't really remember life without the disease, whereas he had a life and dreams that didn't include diabetes. And yeah, you know, even though he's rolled with the punches, it's not an easy thing. to readjust to that, you know, whole new lifestyle.
Scott Benner 1:13:41
I can, I can't imagine it would be and I take your point, especially if you're if you're diagnosed as a kid, as long as you get through the awkward part of life without going off the deep end about it. I think you end up being okay. The most common story I hear, and you'll hear as you're listening to the podcast, from like, mid 20s, early 30s type ones, is my parents took care of it. When I was little, I went to college and lied and said, I was okay. I wasn't, I got out and I figured out I should take better care of myself. There are some people who are just like, like super type A or are just great at it or something like that, who don't have that story. But I think that story is more common than you think my daughter is getting ready to leave for college. I'm incredibly focused on not letting that happen to her while she's away. So I will all find out together how it's gonna go. Because trust me, I could screw this up. But, you know, I'm giving it a shot. Yeah. You know,
Hilary 1:14:37
I don't know how my parents did it. Like, in high school and in college, not having the Dexcom not being able to know what my blood sugar was at any given time. Like
Scott Benner 1:14:48
Hillary they're probably drunk. That's probably I don't think
Hilary 1:14:50
so. I don't think so. I don't know how they did it, honestly. And I just I think they just worried a lot. Um, which I would too, because anytime I don't have data for Henry, I immediately feel that same way. So
Scott Benner 1:15:07
no, no, no, no, it comes a time though in time, you'll start feeling more comfortable. Like, you know, in the warm up period, when you think, Gosh, two hours when those CGM, which, by the way with Dexcom, G seven, when it comes out, I think that's down to an hour. Oh, that's good case of Lord. Yeah, and, but I find that within reason, and maybe with one finger stick, I can imagine how just two hours is gonna go. Like, you know, after you see it enough times, it just, I mean, I realized the uncertainty of what could happen out of nowhere still exists. But once you find real stability, it's hard to not be able to see it even with your eyes closed, I think. But that takes care of a lot of experiences before you'll feel like that. It's just so interesting, that you've had diabetes for so long, even though that you've been doing great for yourself for eight years. And yet that that that confidence you have for yourself does not translate over to the care of your son yet, but it will I think,
Hilary 1:16:02
Well, every diabetic is so different. And you know, the things like we can eat the same lunch, the three of us, and we all need different amounts of insulin or different, like, you know, depending on we're eating, you know, bonds or protein pasta or whatever, like some Henry might not need any Bolus for it. Whereas I need half of the carbs and my husband needs all of the carbs to be Bolus for in order for us to stay in range. And so you know, what works for? One doesn't always work for another and then we have, we're gonna go through growth spurts and hormones, and I'm, I'm not ready. But
Scott Benner 1:16:47
also you right now, you guys must look like mathletes at dinner, you know?
Hilary 1:16:51
Oh, I'm sure that our conversations are just fascinating to the people around us. And very confusing, because we're always talking about net carbs. And I don't even know what else fiber and should we do extended or not? And all
Scott Benner 1:17:10
kinds of stuff most people don't talk about when they No, not at all. That's funny. Wow, you were terrific. I really do appreciate you doing this so much. I'm sorry, I can't be longer than I said I was going to
Hilary 1:17:20
Oh, no, it's fine. My husband went to take pick up the boys from preschool. So we're good to go. But thanks for having me. And I hope that our story is encouraging to other people. And whatever they're going through, because type one diabetes is one heck of a beast. And it can be very challenging at times. So well, I
Scott Benner 1:17:43
believe. I believe it will. I believe he did a great job today telling your story. So I'm, I'm all in on this one. This was absolutely terrific. Thank you very, very well. Thank
Unknown Speaker 1:17:53
you. Thank you.
Scott Benner 1:18:01
Huge thanks to Hillary for coming on the show and sharing her story with us. And another great big thank you to Ian pen from Medtronic. diabetes. Don't forget to go to in pen today.com to learn more. And of course you can get your Contour Next One blood glucose meter at contour next one.com forward slash juice box. It will only take you a few minutes to go to T one D exchange.org. Forward slash juice box and complete the survey. Please do because when you do you're supporting the podcast and people living with type one diabetes and you're helping yourself. T one D exchange.org Ford slash juicebox. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Don't forget to subscribe in the app you're listening in right now. subscribe or follow whatever the app allows, please, it helps the show immensely. Subscribe and follow. I'll talk to you soon.
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