#1812 Family Ties - Part 1
Siblings Crystal and Jason share growing up with a dad who had type 1, their own diagnoses, fear of lows, years of mediocre control, and how a toddler’s diagnosis finally changed everything.
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Key Takeaways
- Generational Impact: Type 1 diabetes can affect multiple generations within a family, and parents may experience profound guilt or denial when a child is diagnosed with the disease they also live with.
- Evolution of Care: Diabetes management has drastically improved since the 1990s. Moving from rigid schedules and basic injections to modern tools like CGMs and automated insulin pumps allows for significantly better control and quality of life.
- The Power of Communication: Breaking the silence around a chronic illness within a family is crucial. Openly discussing diabetes can lead to better support, shared knowledge, and improved health outcomes for everyone involved.
- Overcoming Stubbornness: It is common to resist changing deeply ingrained management habits, but being open to new technologies and perspectives—rather than settling for "good enough"—can lead to dramatic A1c improvements.
- Recognizing Lows: Experiencing early symptoms of hypoglycemia, such as an intense urge to eat or feeling dizzy, is a critical warning sign that requires immediate attention and proper management, especially prior to or right after diagnosis.
Resources Mentioned
- Touched by Type 1: touchedbytype1.org
- Tandem Mobi: tandemdiabetes.com/juicebox
- Eversense 365: eversensecgm.com/juicebox
- Omnipod 5: omnipod.com/juicebox
- US Med: usmed.com/juicebox or call (888) 721-1514
- Juice Cruise 2026: juiceboxpodcast.com/juicecruise
- Wrong Way Recording: wrongwayrecording.com
Welcome & Introductions
Scott Benner Friends, we're all back together for the next episode of the Juice Box podcast. Welcome.
Crystal Hi. I'm Crystal Kremetz. I am a type one diabetic.
Speaker 3 I am Jason, and I have I have talked to you a couple of times before, Scott.
Scott Benner If this is your first time listening to the Juice Box podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all. Look for the Juice Box podcast and follow or subscribe. We put out new content every day that you'll enjoy. Wanna learn more about your diabetes management? Go to juiceboxpodcast.com up in the menu and look for bold beginnings, the diabetes pro tip series, and much more.
Scott Benner This podcast is full of collections and series of information that will help you to live better with insulin. If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me.
Scott Benner If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. Nothing you hear on the Juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
Sponsor Messages
Crystal This
Scott Benner episode of the juice box podcast is brought to you by my favorite diabetes organization, touched by Type one. Please take a moment to learn more about them at touchedbytype1.org on Facebook and Instagram. Touchedbytype1.org. Check out their many programs, their annual conference, awareness campaign, their d box program, dancing for diabetes. They have a dance program for local kids, a golf night, and so much more.
Scott Benner Touchedbytype1.org. You're looking to help or you wanna see people helping people with typeone, you want touchedbytype1.org. Today's episode is also sponsored by the Tandem Mobi system with Control IQ plus technology. If you are looking for the only system with auto bolus, multiple wear options, and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm. Use my link to support the podcast, tandemdiabetes.com/juicebox.
Scott Benner Check it out. The podcast is also sponsored today by Eversense three sixty five, the only one year wear CGM. That's one insertion and one CGM a year. One CGM, one year. Not every ten or fourteen days.
Scott Benner Ever since cgm.com/juicebox.
Diagnoses in the Family
Crystal Hi. I'm Crystal Kermeadz. I am a type one diabetic. Have been since 1994, I believe, is when it was.
Scott Benner I I'm interested that you don't know that. I like that.
Crystal Well, I was a freshman in high school, but I can't figure out mentally at this point what year that was.
Scott Benner Because you're old or because you have a do you have a deficit? What happened?
Crystal No. Because I'm old.
Scott Benner Okay. Alright. Well, how
Speaker 3 old are you?
Crystal The mental math just doesn't mental sometimes. It doesn't math right.
Scott Benner How old are you?
Crystal I am 44. So it's been 30 it'll be thirty one years this year.
Scott Benner You were diagnosed when you were 13?
Crystal I was yes.
Scott Benner See how quickly what? Well, 44.
Crystal No. Sorry. I was 14.
Scott Benner Okay. And why I just missed by a little you know, you can't hold me accountable for, like, missing the end of the year, beginning of the year
Crystal diagnosis thing. It's not my fault. I haven't had the birthday yet
Scott Benner this
Crystal year.
Scott Benner So I see. But but be impressed with my math.
Crystal It was pretty impressive.
Scott Benner Oh, I mean, gosh. I took the year. I took the the your age. Boom. Boom. Just like that. It was nothing. Now we're not alone today, Crystal. It's not just you and I and the people listening. We also have with you another person.
Scott Benner Crystal, is this person your brother, your doctor, is it your garbage man? Who are we talking with right away?
Crystal It is my big brother.
Scott Benner Okay. And who are you?
Speaker 3 I I am Jason. And I have I have talked to you a couple of times before, Scott.
Scott Benner Yeah. Jason, you're gonna be one of the few people that have been on the show three times, I would imagine.
Speaker 3 That's, that's what my other little chat has told me already. So
Scott Benner Oh, your people have said this to you.
Speaker 3 The people have said this.
Scott Benner Well, would it surprise you to know that the only reason I'm certain about it is because those same people told me. So this morning, I got a note from somebody that said, like, oh, I'm so excited you're gonna talk to Jason today. And I looked at my calendar and I thought, no,
Speaker 3 I'm not.
Scott Benner I was like, I am I'm I'm actually recording three times today. I've recorded with Jenny already today. I said, then I have a lady named Crystal, and then later I've I've recorded with Erica. I said, Jason's not on my calendar. And the person said, Crystal's Jason's sister. You guys are talking together. And I went, well, now you ruined the surprise for me. So I was like, don't remember stuff like that.
Scott Benner Anyway, Jason, do you know other episodes you've been on off top of your head?
Speaker 3 No. We would both would both have to ask the same person for those episode numbers. So
Scott Benner Yeah. Do you remember what it was called?
Speaker 3 Keep Taking Showers.
Scott Benner Okay. Hold on. Keep Taking Showers episode twelve ninety two. And? Was that one?
Speaker 3 I do not remember the first one.
Scott Benner You don't remember the first one. Yeah. Well, I guess
Speaker 3 Or was that the first one? No. No. That was not the first one.
Scott Benner No. I don't think so. December seems like it was the last couple years. Yeah. I'll see if I can figure it out.
Scott Benner But I appreciate you guys coming back. And this is a quite an interesting little mix. So, Jason, you have type one diabetes as well?
Speaker 3 I do.
Scott Benner Yeah. Well, tell people what you were just doing.
Speaker 3 I was getting on a call here with Scott and looked at my little ducks card reading here, and it said 68 double arrows down. So starting off well.
Scott Benner Is this after a, like, a meal bolus?
Speaker 3 This was after a handful of jelly beans that, I obviously miscalculated the number of carbs in those jelly beans.
Scott Benner Oh, little aggressive. Maybe didn't need to A
Speaker 3 little aggressive.
Scott Benner It's a oh, jelly beans sounds nice. It's neither here nor there, Crystal. We're not here to talk about snacks. Are we? I mean, maybe we are. I have no idea. How did this all start? Like, how did we end up together, the three of us? Whose idea was this?
Crystal I believe it was Jason's idea.
Scott Benner Why did you think it was important, Jason?
Speaker 3 I don't know. I brought it up in, you know, that other little chat I was talking about, and, several of the people said, you know, it should be it'd be a really good idea to have you guys on because of our unique experience with type one diabetes.
Scott Benner Yeah. And for people who don't know, Jason is a group expert in the Facebook group. So that chat he's talking about is place where you guys all can speak privately to each other. Right?
Speaker 3 Yeah. It kinda lets us get on top of things a little bit quicker if somebody has a question or an immediate concern in the group that needs an answer. So
Scott Benner Yeah. No. It's awesome. I I let me take the time now to thank you for doing that. I really do appreciate the effort that must go into it. To be honest, I don't really even understand the full scope of. So I stay out of that. I've I've mentioned this before. Like, I was invited by the person who set that chat up. He said, look.
Scott Benner You know, it's your group. You can be in the chat. I said, I think it would be great if nobody had to worry about that they were saying something in front of me or, like, I want it to be, like, a place where you guys can just talk to each other. So I don't know what happens in there. Are there a lot of people shitting on me usually?
Speaker 3 Sometimes.
Scott Benner Yeah. Yeah. What do I do wrong, Jason? What are the what's the consensus? What do I do wrong?
Speaker 3 No. We we talk a lot about, your tone sometimes. We can tell when it's like the real Scott and the not real Scott talking.
Scott Benner Oh, on the board? Like, in the group?
Speaker 3 No. In in on a podcast.
Scott Benner On a podcast. There's times that it feels like me and then there's times that it feels like podcast me. Is that what you're saying?
Speaker 3 Yeah. Like, when you're being the honest you and maybe the podcast version of you.
Scott Benner Oh, that's interesting. I wish somebody would explain that to me. I would love that. Maybe I'd love to be that. Send me a list at the end of the month.
Scott Benner Like, here's where we thought this was gonna be you and not somebody said the other day, hey. This is a really good episode. And I didn't have the nerve to ask back the question I had in my head, which was, do you mean that the guest was good or was I particularly good that day? And I I wonder how often I'm not as good at it as I could be or I don't do as good of a job or whatever. It's anyway, neither here nor there.
Scott Benner Crystal's like, I have a real job. Stop talking about your podcast. This is stupid. No. No.
Scott Benner You should be, Crystal. That's exactly what you should be thinking. So who was diagnosed first?
Crystal I was.
Scott Benner And how many years after Jason till it was you?
Speaker 3 Wasn't it two years, Crystal?
Crystal Or was it one? It was two. Yeah.
Scott Benner So, Crystal, tell me, do you remember anything about your diagnosis or the lead up to it?
Crystal I just remember I could not drink enough. I would take, like, a 32 ounce jug of water to bed at night, and I'd have to get up in the middle of the night and fill it up when I got up to pee because, you know, the process of drinking water and peeing and drinking water and peeing, that's all you do. But I also remember prior to that feeling, like, the low sensation when I was, like, at school, and I'd have to go to the nurse's office. And she'd give me a juice box, and I'd sit there for, you know, ten minutes, and then I go back to class.
Scott Benner You were having low symptoms before your diagnosis that when explained to a school nurse, they thought, oh, this girl needs some sugar.
Crystal Yes.
Scott Benner Yeah. How long did that go
Crystal on for? I remember that going on for probably two or three months.
Scott Benner Oh, wow. Okay.
Crystal Yeah. Yeah. It was it was rough.
Scott Benner With hindsight equate it, how low did you do you think you are?
Crystal Oh, I was probably in the fifties, probably lower than that maybe.
Scott Benner Mhmm. So that it's not uncommon, by the way Yeah. Before diagnosis for people listening.
Speaker 3 Oh, you know, now that you mentioned that, Crystal, I experienced the exact same thing. Like, I remember that happening except I didn't go to the nurse because I'm a boy. Yeah. Right.
Scott Benner What'd you do? You just took advantage of running in circles and making yourself feel dizzier? You're like, oh, this is great.
Speaker 3 Normally, just just find something to eat or something to drink or whatever. But not knowing what I was doing, I just, you know, felt that urge that I needed to eat something. I didn't feel terribly low, but, you know, I felt that, like, that sensation that us type ones get when you get low is, like, I have to eat something.
Scott Benner Mhmm. Yeah. And you were happy.
Crystal Definitely. I didn't know what it was either, but that's when I went down to the nurse, and she's like, I think you just need some sugar. And so she give me sugar, and then I'd be fine.
Scott Benner Is that anything you took to back to your parents, or did the school tell your parents about it? Do you remember? No. No. If, Crystal's would you say 44?
Scott Benner How old are you, Jason?
Speaker 3 I think I'm 47.
Scott Benner Okay. She was 47. So she was first, but you are older? Correct. Do you have any other brothers or sisters?
Scott Benner No. No. Just the two of you guys. Okay.
Speaker 3 So You know, Scott, the if you remember, our dad is also type one.
Scott Benner Yep.
Speaker 3 You know, all this is going on, yet for me, I don't understand how things were caught sooner.
Scott Benner Oh, you think that it should've you think Crystal's situation should've been obvious to your parents?
Speaker 3 I think so. Yes. I don't know what Crystal thinks. But
Crystal Looking back at it, probably. But I think dad was in denial.
Scott Benner Oh, okay.
Crystal And because it was his fault.
Scott Benner I'm sorry. Your parents were together. Right? There's two people there? Four four
Crystal Yeah.
Scott Benner Yeah. Four in the house. So your mom have any autoimmune stuff, or is she just a a traveler in this?
Crystal She's just a normal everyday person.
Scott Benner Yeah. She just got brought along for the ride. How old tell me again how or, Crystal, how old was your father when he was diagnosed?
Crystal He was three.
Scott Benner Okay. So he's had it his whole life. Okay.
Crystal Yeah. He did.
Scott Benner So what do you mean you think he was in denial? Are you remembering interactions with him that, in hindsight, should have brought up some more questions?
Crystal When I got really, really sick and we decided to go to the doctor's office, he actually tested my blood sugar before we left, and it was well over 500. By the time we got to the hospital, it was well over a thousand.
Scott Benner Oh my gosh.
Crystal So yeah. But he blamed himself. So he, yeah, he was in complete denial that that it could happen to his kid because he was expecting it to skip a generation and be one of our kids.
Scott Benner He's like, I'm gonna be older when this happens, and I won't care.
Crystal But Exactly. Right?
Scott Benner Also, one of you have a wolf. What is going on there?
Crystal Sorry. That was my dog. The I think the FedEx guy's
Speaker 3 here.
Scott Benner What kind of dog is it?
Crystal Well, that one is a blue healer lab mix.
Scott Benner How many dogs do you have, Crystal?
Crystal I have two.
Scott Benner Okay. Two is fine. Yeah. More than two, I I send I send the government to check on you. I think there's something wrong.
Scott Benner Yeah. Nope.
Crystal Yeah. Yeah.
Scott Benner Okay. So what is the what mix?
Crystal He's a blue healer and lab mix.
Scott Benner I don't know what a blue healer is.
Crystal Well, they're supposed to be non shedding dogs, but tell you what, that dog sheds more than any animal I've ever owned.
Scott Benner Crystal's like, listen. Whoever sold me that dog, I'd like to take this opportunity to say, you lied to me. Okay?
Crystal Right?
Scott Benner Right. Also, Blue Heeler sounds like a sad doctor to me.
Crystal They're more of like a southern Southern? Like herding type dog.
Scott Benner I gotta just look real quickly. I'm sorry. I know this is apropos of nothing. Blue Heeler dog, and it's a mix with oh, it looks like a wolf.
Crystal Yeah. Kind of sorry.
Scott Benner Australian cattle dog. Is that the
Crystal Yep.
Scott Benner Okay. And and what's the mix with?
Crystal With a Labrador.
Scott Benner Is this a mutt or is this a thing people do?
Crystal No. It was just it was a mutt. Mama was a little whore.
Scott Benner Broadcast title. Jesus Christ. It's a little early in the in the show, but mama's a little whore. I mean, definitely get people
Crystal Mama was a little whore because his brother my oldest daughter has his brother, and his brother is a German shepherd healer mix.
Scott Benner Can I tell you the problem, Jason, with using that as a title is that people are gonna feel ripped off when they find out it's about a dog? You know what I mean? They're gonna be
Crystal like Exactly.
Scott Benner I clicked on this for sure to find out that Crystal was the the whoring question, and then then it turns out to be your dog, and I feel let down.
Crystal Yeah. Right?
Scott Benner Never nevertheless. Okay. Okay. So anyway, the FedEx guy, do you know what you ordered? Is it Amazon?
Crystal Dog food.
Scott Benner Dog oh, maybe he knows.
Crystal It's my Chewy order that's supposed to be here three days ago.
Scott Benner Hey, Chewy. What the hell?
Crystal No. It's FedEx because Chewy got it to them on it was their Monday. It's been sitting in the warehouse in Cedar Rapids, Iowa since Monday.
Scott Benner I think that you can't trust anybody. That's what you're telling me.
Speaker 3 Right?
Scott Benner Yeah. The whole system is, I don't know if you know the word. Sorry. I wanna get back to it now. You're dizzy in the in the office.
Scott Benner It goes on for way too long. I mean, you're in I'm guessing clearly in DK by the time that your dad's like, hey. I guess, I gotta go. Do you have conversations with him over a lifetime about I mean, I guess he felt is he ashamed? Is he guilty?
Sponsor Messages
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The First Low and Father's Guilt
Crystal He he had a lot of guilt. That was the first time I ever saw my father cry was when I was in the ICU because he felt so bad that he gave it to me.
Scott Benner Did he ever tell you that? Did he ever use those words?
Crystal Not to me. He told mom, and mom told me about it later on.
Scott Benner Okay. Did you feel that? I mean, I know you saw him cry that day, but moving forward, did he was that a, like, a I don't know, a feeling that laid over the house for you, or was he able to push through it?
Crystal I think he pushed through it
Scott Benner Yeah.
Crystal For the most part. I do feel that he was a little more attentive after that. Oh. Dad was a workaholic, so he worked all the time. And if I wanted to spend time with dad, I went to work with him.
Crystal So in the summertimes, I would go and work with him during the day when he was working for himself as electrician, and then he would go evenings to the local factory and work all evening. After I was diagnosed, you know, he was always kinda checking in on me. You know, you feeling okay? Do we need to stop for lunch?
Scott Benner Mhmm.
Crystal Or before, it was always me asking him, you know, do we need to go get some lunch? You're you're not acting quite right.
Scott Benner I see. Crystal, true or false, you could come to my house and reroute a couple of switches for me?
Crystal Oh, I definitely could. I'm helping my brother-in-law right now rewire his house.
Scott Benner No kidding. Oh, I wish we lived closer.
Crystal An old an old schoolhouse house, and they completely gutted it. And I'm working on rewiring that house right now.
Scott Benner And you learned that from being with your dad? Yes. Oh, that's cool. That's a nice thing to take through your life. Do you have kids?
Crystal I have two, two stepdaughters.
Scott Benner Okay. Do you teach them about electricity?
Crystal No. No. They don't get
Crystal They have no desire to learn.
Scott Benner That's not how TikTok works at all. So Yeah. Yeah.
Crystal Just like Jason had no desire to learn from dad.
Scott Benner So Oh. Oh.
Crystal I learned it.
Scott Benner That's it. It's very cool.
Crystal Yeah.
Scott Benner That is a skill I wish I had. My dad knew everything about electricity, and I never once absorbed any of it, and I really wish I would have. So okay. In that time, you're diagnosed. Do you know what your management style was like?
Crystal Very poor. Very little bit of management. It was you tested your blood sugar four times a day. You took your regular insulin and your NPH in the morning. You took your regular NPH at night, and you didn't care about it.
Crystal There was there was no checking.
Scott Benner Yeah. Poor compared to nowadays or poor compared to what was expected of you back then even? You were doing a good job with the system that was in place, or you weren't even sure. You were.
Crystal Yeah. Yeah. I thought, you know, we I was doing what the doctor told me to do. You know? You checked in the morning. You checked at lunch.
Crystal You checked after school or before dinner, and then you checked at bedtime.
Scott Benner Gotcha. Okay. And your dad had been managing that way his whole life pretty much?
Crystal Yes.
Scott Benner Yes. But do you guys both remember him being low sometimes?
Crystal Yes. I actually experienced my first low with him when I was probably, I don't know, four or five. I remember it vividly in our old living room in the house before we moved to the living room to the back of the house. It was in the morning, and he just started to shake all over the place. And I remember being so upset because he knocked over the lamp, and that's what made me mad.
Speaker 3 Mhmm.
Crystal And so that was back in the day where, I don't know, mom and dad had it set up where you just push one number on the phone and it rang mom's work. So I called mom at work and was telling her about it, and she's like, I'm gonna call the ambulance, and they're gonna come, they're gonna help your dad. And mom got there before the ambulance did, and I just I vividly remember that experience.
Scott Benner And did
Crystal you And I never wanted to have that happen to me.
Scott Benner Yeah. No kidding. Did you try to I'm your little kid then, but did you try to help him, or did you just sort of stand there and watch it happen being pissed about the lamp?
Crystal I had no idea what it was.
Scott Benner Yeah.
Crystal At that point, I was not educated.
Scott Benner Did a kid explain to you after that? Were they like, oh, guess what? Sometimes this happens to daddy or like, was there not that much conversation around it? Mean, you're a little kid.
Crystal That I don't remember. I don't remember
Scott Benner Yeah.
Crystal Having a conversation about it.
Scott Benner Do you remember more of the visceral part of it? You remember watching it happen to him? That feeling you had about, oh, no. We knocked the the lamp lamps must have been so expensive where you live. Yeah.
Scott Benner And where the and the lamp thing. And then that's something. Okay. I said that stuck with you. Remember as a family, like, ever talking about type one diabetes Yeah.
Scott Benner But, like I don't either. Growing up. Never. This thing that impacted him so much, just what I mean, you guys have heard the episodes where there was a woman on last year. Right?
Scott Benner Her mom tried to hide it, like, for, like, a decade. She thought her kids didn't know she had type one diabetes. They knew, but, like, the mom was trying to hide it. That's but yours wasn't being hidden. It just wasn't spoken about with him.
Scott Benner Right. Hey. Okay. Crystal, when you're diagnosed, I I see how it it was for you. But, Jason, how was it for you when she was diagnosed?
Living with Type 1 as a Teenager
Scott Benner See, I was in high school, so I don't think I paid a whole lot of attention. I I regret that for sure after, you know,
Speaker 3 lived experiences and looking back on it.
Scott Benner Yeah. I don't remember a whole lot of
Speaker 3 it at all because I was busy living my high school life.
Scott Benner Right. Yeah. Isn't that something like I think that's common by the way. I wouldn't think of it as a judgment about you. I would think that most people would have that experience, but it is weird.
Scott Benner Like, looking back on it as an older person, like, yeah, your sister's diagnosed with diabetes. You know, you know, I I guess, at least have some context for it with your father. And then you're just sort of like, well, okay. And then you just keep going. And and it doesn't become more of a focal point, I guess, is interesting.
Speaker 3 Yeah. And I think it also was just, you know, like, we were just talking about, like, it wasn't made out to be as big of a deal as it actually was in our family.
Scott Benner Mhmm. But why is that? This is a question for both of you. Was it not made out to be a big deal because your dad was trying to minimize it, or was it not made out to be a big deal because he didn't really know that it was?
Crystal I'm sure he knew it was a big deal. I just don't think that since he had it, since he was three, that it was a huge deal to him. You know, it's the only thing he ever knew.
Scott Benner But how are his health outcomes during that time?
Crystal Well
Scott Benner Do you know? Do you know what his a one c's were in hindsight?
Crystal Awful.
Scott Benner So that's the thing. This is by the way, this isn't me talking about your dad or you. This is me, like, wondering bigger, you know, around the conversations that I've been having for a decade. Like, I am fascinated that somebody could get type one diabetes, know the implications of it, it not be going well, and they act like, it's just what happens. Like, that part freaks me out.
Scott Benner I I really don't know I mean, if you can take diabetes out of it, we could talk about any number of things that go on in the world. I'm constantly baffled by people's ability to just ignore things that are that are happening to them. I don't know how to, like, explain that. You know what I mean?
Crystal So when he was little, you know, they always went to the University of Iowa to have all of his diabetes care taken care of.
Scott Benner Mhmm.
Crystal But I think when he got older and kinda aged out of the pediatric system over there, he didn't see endocrinology until after I think it was till after Jason was diagnosed before he ever went back to an endocrinologist.
Scott Benner Yeah.
Crystal He was die he was managed by family medicine.
Scott Benner Yeah. Chris, I understand the functionality about the way it comes, but, like, like, if I walked up to you right now and stuck a little pen knife in your leg, and you were like, ow. And I said to you, like, yeah, we're just gonna leave that there forever. Just gonna fester a little and one day you'll die of an infection from this. But we're we all know this is a problem, but no one's gonna do anything about it.
Scott Benner And you're gonna agree to just live with it like this. And you go, okay. Like, that part just throws me for a loop. Every time something comes up with my health, I focus on how to get rid of it or change it
Crystal Yeah.
Scott Benner Or something. Like, I don't always succeed at it, but I I and some things have taken longer than others. But sometimes the tools just didn't exist, but I still push towards things like I guess it's like a it must be a coping mechanism. It's a couple shots a day. The outcomes aren't great.
Scott Benner I get dizzy sometimes. We had to call the ambulance once or twice, but you know what? I'm alive and there's no other answer. Then I get it. Then I get, like, well, I'm just I'm making the best of a bad situation.
Scott Benner I mean, once the technology shifts or the insulin gets better and people are still like, whatever. Like, I I interviewed a guy yesterday. He was really great. His name was Roger. Roger was 60 years old.
Scott Benner He is blind. Like, one hundred percent sees black blind. Diagnosed as a little kid, lost his sight in his early twenties on the podcast because he's looping and, like, you know, having all this great success and everything. And I was like, oh, when did you pull this all together? He's like, last year.
Scott Benner I'm like, last year? Like, when you were 15 you he was diagnosed when he was three. It took fifty six years to, like, I mean and and I see he had different, you know, different speed bumps along the way, but, like, I don't know. I don't even know if I'm articulating myself well. Like, it freaks me out that your dad was in the situation he was in, having the outcomes he had, then you were diagnosed and you just started managing the same way he did.
Scott Benner I mean, you guys are parents. Right, Jason? You have kids too. Right? Yep.
Scott Benner Doesn't that sound wrong to you?
Speaker 3 It definitely like, it does.
Scott Benner Okay.
Speaker 3 And I think after I was diagnosed, like, that's kind of the mindset that kicked in in my head after maybe a year or so of having type one. It's like, you know, I have to I have to do something about this because I don't want to end up like my dad.
Scott Benner Do you think about Crystal then when you have that idea? Like, like, oh, no. Crystal's gonna go the same way? Are you too young to worry about her too?
Speaker 3 Still too young. Because when I was diagnosed, you know, I was a senior in high school. And that summer after high school, I went to a two year tech school, like, right away. So it was like I was out of the house pretty quickly.
Scott Benner Okay. After your diagnosis. And Yes. And, Crystal, were you how long did you well, I guess I should ask you now, Crystal. Like, what's your management like now?
Crystal I'm on the Mobi with Dexcom g six.
Scott Benner Nice. And what are your outcomes like? What what do you generally think your a one c is gonna be when they look?
Crystal My last one was 6.8.
Scott Benner Oh, that's awesome. 9. Oh, you you must be thrilled with that.
Crystal I am. Yeah. Yeah. Yeah. Because the first probably ten years, was 11 or better.
Scott Benner So so then there you go. Like, so for the first ten years, you you have that horrible experience with your dad getting low. Right? You have that kind of aversion to it. Do you know he's not in a healthy way?
Scott Benner Or do you not or is it so not spoken about that you don't know? And at what point do you realize for yourself that your a one c's aren't good?
Crystal It took me quite a while to figure out that, you know, the way that dad and I were doing it wasn't the best way.
Scott Benner Mhmm.
Crystal But there also wasn't a whole lot of research available because, you know, the Internet was just starting, and we didn't have podcasts. We didn't have forums online. We didn't have other diabetics to reach out to.
Scott Benner You're just piecing your way through it. You're trying to stay alive day to day. Your understanding of what's happening to you grows over time, and then eventually, there's enough tools and resources to coalesce all that stuff together and make a better decision?
Crystal Definitely. Yeah.
Scott Benner Alright. So when you guys do you both guys agree that when you look back, it's not a failing of your father's as much as it is just a symptom of the time?
Speaker 3 I think it's a symptom of the time, and I wouldn't say that our dad was always present in our lives every single day.
Scott Benner Mhmm. I think he was a lot more present
Speaker 3 in Crystal's life. A lot of times, I was out kinda doing my own thing, figuring life out, necessarily not without his guidance all the time.
Scott Benner Mhmm. Crystal, are you are you more like your dad than than your brother is?
Crystal Yes.
Scott Benner Okay. And Jason, are you more like your mom?
Speaker 3 Yeah. A 100%.
Scott Benner Gotcha. Okay. Oh, so interesting. So you have different mindsets. Crystal, when you figure it out, like, when you say to yourself, oh, no.
Dating and Stubbornness
Scott Benner We are not doing what we should be doing. Do you think of yourself or your dad, or do think of yourself as a team and you guys both need help?
Crystal Well, by the time I figured it out, I was an adult. So at that point, it was what do I need to do Mhmm. To better myself, and then we'll work on dad.
Scott Benner Okay. Did it work out that way?
Crystal Yeah. Okay. Yeah. Jason and I got him talked into a Dexcom and a Omnipod eventually. It took a lot of years of us actually doing it ourselves for him to see that it was okay to use modern technology to manage his diabetes.
Speaker 3 That's fair. That's really that's really recent. Like, it was I would say it was even after the first of my two type type one diabetic boys was diagnosed.
Scott Benner Yeah. You guys are, like, on a roll, by the way. You can you can make people with diabetes like it's nothing over there.
Speaker 3 Yeah. They didn't need any research candidates because I can I can make them?
Scott Benner This is like, watch this. Watch this. Boom. Diabetes. Yeah.
Scott Benner Like magic. Crystal, anything to the fact that you don't have natural children? Are you trying to avoid making diabetes babies, or did it just not work out that way?
Crystal I was older when I got married, and my a one c was not great. And so my husband and I made the choice the decision together that since he already had two that we would just
Scott Benner We'll use these. Yeah. Gotcha. Ready? We'll dig a little further.
Scott Benner Did you not date seriously as a younger person because of diabetes in any way?
Crystal I think so. Yeah. I was kind of awkward. I probably dated twice in high school.
Scott Benner Mhmm.
Crystal And they weren't great relationships. They were
Speaker 3 Not at all. Awkward.
Crystal What do you mean not at all?
Speaker 3 I didn't like either of them.
Scott Benner Yeah.
Crystal Oh, well, true.
Scott Benner Idiots. There's morons. What do you mean awkward? Are you, like, socially awkward or awkward because you have diabetes and you wanna tell people about it? What did you mean?
Crystal I think it was the diabetes mostly. I know, I didn't know how to approach it with other people
Scott Benner Mhmm.
Crystal Because I didn't know anybody else who was diabetic except for my dad.
Scott Benner Okay. And so if you're gonna get close to these other people, then you either have to make a decision to, like, obfuscate. Don't tell them about it as much as possible or give them access to your life that you don't know how to give to people.
Crystal Exactly. Exactly. I didn't know how to approach the topic of, you know, no. I can't go out for ice cream today because my blood sugar is too high.
Scott Benner Okay.
Crystal And I don't wanna take another shot. Because at that point, I was you know, the pens came out at that point when I was later on in high school, and I didn't wanna have to carry it around all the time. Right. It was inconvenient, and I was a teenage girl, and I didn't have I shouldn't have to do that. Yeah.
Crystal It was
Scott Benner So I'll sit I'll just sit at home and sulk and be sad and alone versus do those other things.
Crystal Yes.
Scott Benner So you wanted to date? Sure. Yeah.
Crystal I mean, what teenage girl doesn't wanna date?
Scott Benner Okay. So, that all makes sense. But that goes on did you did you go to college or trade school or anything?
Crystal I did a couple years at the community college.
Scott Benner Were there boys there that you let know about your diabetes?
Crystal No. Because I was in the nursing program, so it was mostly all females
Scott Benner Okay.
Crystal In my classes.
Scott Benner So when do you, like I mean, Crystal, don't know how to ask this. Like, when are you, like, mama gotta get her cookies? Like, when does that happen exactly? Like, when are you, like, I'm just gonna dive into this for the sex part?
Crystal I was quite old.
Scott Benner Really? And this is
Crystal because 21 ish?
Scott Benner Because of the diabetes.
Crystal Just because I didn't know how to approach it, and I didn't know Yeah. How it would be accepted or not accepted.
Speaker 3 Right.
Crystal You know? Other people.
Speaker 3 Not in a serious enough relationship, you know, like Yeah.
Scott Benner To give over to give over that kind of access to your feelings and and how you feel to somebody. Yeah. Jason, I'm sorry we're talking about this about your sister in front of you. I'm sure you're not happy about that. Truly, I think it's genuinely insightful.
Scott Benner And then how old were you when you got married?
Crystal I was 26 when we got married.
Scott Benner Okay. I mean, that's not that old. Yeah. But now you're saying you're 26, you're you finally find a boy you're gonna talk about this with and Yep. Let him in and everything and that's all great.
Scott Benner And then but you get married, you start thinking like kids, but you're like, my a one c is, like, messed up. I can't do that. Did you think I can't even there's no way for me to make it better, so we shouldn't try?
Crystal Not so much that I couldn't make it better, but I was set in my ways and I wasn't
Scott Benner willing to Stubborn, you mean?
Crystal Yes. I was very stubborn.
Scott Benner Hey, Crystal, are you what they call are you what they call a pain in the
Crystal Yes.
Scott Benner Okay. Yes. Apparently, yes.
Scott Benner I mean, I'm a pain in the ass. So I was just wondering if maybe you were too. Yes. What is stuck in my ways mean?
Crystal So I wasn't willing to change what my daily routine was.
Scott Benner Why? You know? Tell me why.
Crystal Because I was a pain in the ass.
Scott Benner That's not what I wanted from dig deeper. Why not?
Speaker 3 You think it was working from your perspective? It was working.
Crystal Well, I mean, was working. I wasn't I wasn't in the elevenths anymore. I was down in probably the mid to upper eights. But
Scott Benner So it was better.
Crystal It was better. Okay. But it wasn't
Scott Benner But what were the goals What was your doc yeah. What was so there is this is what we're getting to is that back then, somebody might tell you an eight a one c is good, but you have to get that magic six or five to have a baby. And having done all you did to go from 11 to eight, you're like, I can't get the five. Is that how it felt?
Crystal Looking back at it, yes. Yeah.
Scott Benner Alright.
Crystal I was like, there's no way I'm ever gonna be below six or even in the sixes. I never thought I would be in the sixes before.
Scott Benner Do you think of your story as a sad story?
Crystal A little bit.
Scott Benner I'm not the one bringing that out today. This is already a feeling you have.
Crystal Yeah. No. I no.
Scott Benner Okay.
Crystal I I regret not taking it more seriously when I first got married and having my own, but I don't regret the two that I have.
Scott Benner No. I wouldn't think you would. Yeah. No. Okay.
Scott Benner Yeah. Yeah. In case they hear that, we should say that.
Crystal Yeah. No.
Scott Benner Mom mommy loves you. All that stuff. Right?
Crystal Yes. I do. Okay.
Scott Benner What is not taking it more seriously mean? And is that a thing you knew that you weren't doing then, or is that only a thing you know through hindsight?
Crystal I think it's hindsight. You know, I was functioning. I was, as far as I knew, I was managing my diabetes.
Scott Benner Right.
Crystal Okay. Because I was taking my insulin every day. I was counting my carbs. I was checking my sugars. You know?
Crystal This was before CGM, so I was checking my sugars four or five times a
Speaker 3 day.
Scott Benner You were doing the things they asked you to do, you were having outcomes that people said, generally speaking, are are good? Yes.
Crystal Yeah. Exactly.
Scott Benner They just weren't good enough to good enough, quote, unquote, to have a baby back then the way people talked about it.
Crystal Yes.
Scott Benner Yes. Okay. Yeah. Yeah. Jason, at that point, when she's 26 and married, you're a couple years older.
Scott Benner You've now had diabetes for more than a handful of years.
Scott Benner What is your management like back then?
Speaker 3 So a little bit prior to Crystal getting married, we got married her and her husband got married a year before no. It's the same year.
Crystal It was the same year. Was, like, three weeks.
Speaker 3 Yeah. Three weeks. Yeah. Prior like, if you can if you step back probably, like, five years from that, I was living in San Diego at the time. I'd moved there, followed a girl.
Speaker 3 You know how that worked out, Scott. Didn't work out. My management at that point in time was I tested pretty frequently, and I swagged every single meal that I ate. I was pretty bold with insulin even back then. You know, I would take enough insulin to probably feel low, and then I knew it was time to eat or drink something again.
Scott Benner Okay. So you were riding on the lower side?
Speaker 3 Oh, definitely.
Scott Benner Okay. Why? Do you do you have hindsight into why that was your approach?
Speaker 3 I know exactly why that's my approach. So when I was diagnosed, I played a lot of roller hockey. What I noticed while playing hockey is that if my number was good, I played a lot better. So that was kind of instilled into my brain is I perform better when I'm at a reasonable number.
Scott Benner Okay. And so more you needed more insulin to make that happen.
Speaker 3 Right.
Scott Benner Isn't that silly that it's just that simple? Like, that you just had a hobby that you wanted to be able to do, and so you were more aggressive with it. And so where were your a one c's at that time then?
Speaker 3 Probably in the sixes. Yeah. I was also you know, I bounced between high fives and probably mid sixes for those ten years before Crystal got married.
Scott Benner Lot of lows with all
Speaker 3 those I would imagine so. Yes.
Scott Benner Yeah. Some of you probably didn't even know about, I would imagine.
Speaker 3 Yeah. We I've got some stories about being low too. So
Scott Benner I need a pivot point. So give me your best low story.
Speaker 3 My best low story? This is in San Diego. I was living by myself at this point in time. I was live in an apartment over by the Mormon temple in San Diego. It's a giant castle looking place.
Scott Benner Mhmm.
Speaker 3 Woke up in the morning. I don't exactly remember what I was doing, getting ready for somebody to come over and pick me up to go out to lunch. And, apparently, what I what I think had happened is I took some insulin in the morning, had a little breakfast, and that is the last thing I remember. And, thankfully, that day, you know, living by myself in San Diego, you made sure you locked your door every day. And for some reason, I had unlocked the door in the morning, and my friend came over around lunchtime, and she bangs on the door.
Speaker 3 I don't answer it. Bangs on the door some more, and I don't answer it. And then she she decided, well, maybe I should poke my head in or see if the door's unlocked. And, thankfully, it was unblocked. And she came in, and she said that, yeah, you were laying halfway underneath the coffee table.
Speaker 3 Your feet were up on the couch, and you're throwing up all over yourself, and you're kinda drooling at the mouth. After that, you know, she called the called 911, and they came and picked me up and took me to the hospital. And that was a, like, a fiasco. Like, I just recently found the medical records from that. And they when they picked me up, they tested my, you know, blood sugar, and it was not high.
Speaker 3 It was pretty normal looking.
Crystal Mhmm.
Speaker 3 And so they didn't really suspect that it was from a low. But, you know, looking back on it and the knowledge that I have now, I'm pretty sure what happened is, you know, I had that seizure, and the adrenaline kicked in and brought up my number enough to, like, you know, save my life.
Scott Benner Yeah. The your liver helped you.
Speaker 3 Yeah. Yeah. So I think that happened. And then, you know, after that whole incident, you know, they did, like, a CAT scan on me and all that stuff trying to figure out what was wrong with me, and it probably took my brain a good twelve, fourteen, fifteen hours to, like, partially reboot
Scott Benner Mhmm.
Speaker 3 And kinda wake up and figure out what's going on, and it just took a long time to recover from that. And it took me another probably solid week to remember any sort of details about what was happening around the time that I had the seizure.
Scott Benner Okay. Wow. Crystal, you knew this at what point do you know that happened to him? Is it, like, after it's
Crystal over? Us.
Scott Benner Oh, okay. So friend. Her friend called you guys. Did does somebody go out to him?
Crystal Mom did.
Scott Benner Okay.
Crystal Yeah. Mom did.
Scott Benner Gotcha. And you have diabetes at that time too. So are you thinking, like, oh, that's never happened to me before? Or I hope they never
Crystal thinking, holy crap. I don't ever want that to happen to me.
Scott Benner Do you think that that's partially why you let your blood sugars be higher?
Crystal Yes.
Scott Benner Okay.
Crystal A 100%. Yes.
Scott Benner So you're experiencing your dad get low, then hearing about Jason keeps you a little on the high side. And, Jason, your desire to be good at roller hockey keeps yours on the lower side.
Speaker 3 Exactly.
Scott Benner Isn't life strange? My gosh. And then where in this process like, I know when you guys go to your dad and say, hey. Why don't you try CGM? But before that, you guys must, like, pull things together even a little better.
Scott Benner So, like, are you doing that together? Do you guys have some sort of, like, crazy cool diabetes bond, or do you not really talk about it very much?
Speaker 3 We didn't talk about it much every now and then, but I don't think we ever, like, discussed it as a a point of conversation. It would probably come up in conversation, but not something that we kinda sought out from each other.
Scott Benner Okay.
Crystal Well, with you being up at Eden Prairie and then out in San Diego, I didn't have my diabetic brother
Scott Benner Lot of contact.
Crystal With me. Yeah. And,
Crystal you know, we didn't have cell phones back then. We didn't have FaceTime. We didn't have any of the good stuff Yeah. Back then. And, you know, I'm talking like I'm anciently old here.
Scott Benner Well, you're pretty old. Don't
Crystal I am pretty old.
Scott Benner Yeah. Yeah. Don't worry about it. Anybody who remembers no cell phones is pretty old Yeah. At this point.
Speaker 3 Yeah.
A Turning Point: Wesley's Diagnosis
Scott Benner Well, okay. So you guys don't have the ability to be contacted. Is there ever for a either of you, and this might I mean, maybe I'm maybe you'll say no. But do you ever have that feeling like, know what it's like to have diabetes. Jason's off somewhere having a different experience.
Scott Benner Crystal's off somewhere having a different experience. I wish we were closer about it or I wish did you ever worry about each other and not tell each other you were worried? Like, I'm looking for any of the what it felt like to be isolated from each other feelings.
Speaker 3 Don't think I I don't think I worried about it. I'd no. I didn't worry about it
Scott Benner Why not?
Speaker 3 When I was away. Why not?
Scott Benner Because you have Jason, you have a kid with diabetes.
Speaker 3 Yeah. I didn't I don't think I started worrying about it until, like, when my first kid was diagnosed. And that's I think I think having Wesley diagnosed kind of the catalyst within our family to actually start talking about it.
Scott Benner Ah, okay. That's what I wanna get to. So Wesley's diagnosed, and one of your thoughts not long after that is, holy shit. Is Crystal okay?
Speaker 3 Yeah. I definitely thought about that a lot more. Okay. And I know that we definitely talked about it significantly more than we had in the past after that.
Scott Benner Crystal, you know your brother's kinda like a like a touchy he's a feely guy. Right? Like he's got
Crystal He can be.
Scott Benner Yeah. He can be. Right? Okay. Are you like that too?
Scott Benner Less so?
Crystal I mean, yeah. I suppose so.
Scott Benner Crystal, what the hell was that? Yeah. Do you do you you are you do you get worried about people? Do you get, like do you think do you sit around worried about Jason sometimes?
Crystal Depends. I mean, I worry more for the boys than I do Jay. Okay. Because
Scott Benner Because you know your brother's an idiot. You're worried you can't take care of him.
Crystal Yeah. No. That's
Scott Benner Like, I don't know how this the next holding this whole thing together. I knew him when let me tell you a story.
Crystal Yeah. Right.
Scott Benner I'm 54. I have two younger brothers. I still I worry about my brothers, like, you know, a fair amount. And so I was I'm just wondering, like, how that all works. So but let's go back to your son being diagnosed and how that kind of, like, moves your family into another direction.
Scott Benner So what do you think the I'd like hear from both of you. Like, what was that process like? It sounds like it started with you, Jason, but then how does it transfer into Crystal and then become what it is now? And what is it now?
Speaker 3 I think when Wesley was diagnosed, it really kinda opened up everybody's eyes because, you know, he was only, like, two and a half years old. Mhmm. And we'd also been told the same thing growing up. You know, it always skips a generation skips a generation. And I think that really kinda opened up everybody's eyes as to, you know, this is a a real thing.
Speaker 3 And through watching not such good care happen, like, we can't let that happen to Wesley. Like, you we have to talk about it. We have to do something about it. I don't what what's your opinion, Crystal?
Crystal I felt that Wesley's diagnosis was a big turning point in the family, that it was okay to talk about it and that we needed to talk about it because what has always been done wasn't working for any of us.
Scott Benner At least not well enough for your desire for Wesley's outcomes.
Crystal Exactly. Yep.
Scott Benner Because it was working well enough for you guys. You guys were all okay with it because you were doing it for yourselves. Yep. But once it gets on to the child, then everyone how about your dad? Did your dad have that feeling too?
Scott Benner Do you know?
Speaker 3 Definitely.
Scott Benner This is his worst nightmare come true. He didn't think you guys were getting it. He thought some unnamed boy or girl in the future was gonna end up with it, and then that happened too.
Speaker 3 Right. I think it really again, like, it it hit him hard when Crystal and I were diagnosed, but, know, he balled it up and shoved it in the back of his brain. I think when Wesley was diagnosed, it was the first time, like, I visibly saw him, like, feel that that kind of pain, you know, that that knowledge that, yes, Wesley has type one. And he's so young, like, he's young like my dad was. Yeah.
Speaker 3 And there's nothing that Wesley can do to take care of himself because, you know, two and a half, he can't do that.
Scott Benner So Right. Your dad's Yeah. Your dad I'm sorry. Your dad's gone now. Right?
Scott Benner Yes. Pretty recently? Couple years?
Speaker 3 Two years as a crystal.
Crystal Two years. Yeah. '23. I don't know. '24.
Scott Benner Because I'm sitting here trying to put myself in his mind, like, is he sad because he knows what life's gonna be like, he thinks, because he had an experience. He thinks that this is gonna be the you know, this is gonna be your son's experience. Is he angry at himself, which is ridiculous, but still, I guess, he feel at fault. I wonder if it's just ends up being a mix of the whole thing or if there's, like, an overwhelming portion of this that that's got him. Did you guys ever get to talk
Speaker 3 to He was angry at himself for pausing all of this. You know? I think that he had that definite guilt and anger in the beginning, but I think I and my wife, Tina, do a really good job of taking care of our two t one d boys that I think that helped shift his mindset a little bit.
Scott Benner Mhmm. Jason, do you feel like that at all? Do you feel like I did this?
Speaker 3 No. I don't feel like that.
Scott Benner You don't feel like that? Okay.
Speaker 3 Not at all.
Scott Benner Because well, here's a question for you. Do you think you don't feel like that because you're a reasonably healthy human being, who understands that this isn't their fault? Or do you think it's you don't feel that way because you can blame your dad because if there is a lineage, it started with him and not you.
Sponsor Messages & Outro
Scott Benner This episode was too good to cut anything out of, but too long to make just one episode. So this is part one.
Scott Benner Make sure you go find part two right now. It's gonna be the next episode in your feed. The conversation you just heard was sponsored by Touched by Type One. Check them out, please, at touchedbytype1.org on Instagram and Facebook. You're gonna love them.
Scott Benner I love them. They're helping so many people at touchedbytype1.org. Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. I'd like to thank the Eversense three sixty five for sponsoring this episode of the Juice Box podcast and remind you that if you want the only sensor that gets inserted once a year and not every fourteen days.
Scott Benner You want the Eversense CGM. Eversensecgm.com/juicebox. One year, one CGM. Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast.
Scott Benner If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card. Would you like a Christmas card?
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Scott Benner Link's at juiceboxpodcast.com. I created the diabetes variable series because I know that in type one diabetes management, the little things aren't that little, and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise, and those other variables that impact your day more than you might think. Jenny Smith and I are gonna get straight to the point with practical advice that you can trust. So check out the diabetes variable series in your podcast player or at juiceboxpodcast.com.
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