#461 Generational Type 1 Diabetes

Jason is the son, father, brother and grandson of someone with type 1 diabetes.

Jason also has type 1.

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**DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:10
Hello, everyone, and welcome to Episode 461 of the Juicebox Podcast. On today's show, we're going to be speaking with Jason who has type one diabetes. And there's actually a lot of type one in his family, but I'm going to let Jason tell you about that in just a moment. 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. We're becoming bold with insulin.

If you enjoy talking about type one, management and getting community and resources from other people just like you, please check out the private Facebook group. For the podcast. It's called Juicebox Podcast type one diabetes. They'll answer just a couple of brief questions and make sure you're a real person. And then you'll be in with 10,000 other people living with Type One Diabetes, as they help each other and chat. It's really a lovely and supportive place. I hope you check it out.

This episode of The Juicebox Podcast is sponsored by touched. This episode of The Juicebox Podcast is sponsored by Omnipod Dexcom and touched by type one, find out more about the Dexcom g six continuous glucose monitor@dexcom.com forward slash juicebox. See if you're eligible for a free 30 day trial of the Omni pod dash at my Omni pod.com Ford slash juice box. Wait a minute, they've changed the URL. I have been saying to you my Omni pod comm forward slash juice box for a very long time. But starting today, drumroll h just Omni pod.com forward slash juice box links in the show notes links at Juicebox Podcast comm when you click the links, you're supporting the show. Thank you very much.

Jason 2:19
And here is Jason. I'm Jason and I am type one diabetic. And I have a lot more story I guess.

Up Introduce yourself. It is it feels like if I really say what I mean here, then I'll say everything I mean to say in the podcast. That's right. We'll get to it, I guess right 100%. So, alright, so Jason, yours is a fun story. I think in that you're in, tell me if I'm going to tell a story. And then you'll either say that is what happened or no Scott, you're thinking of someone else. But either way. I think you were in one of the group, like zooms that I've been doing and then the first time I set them up, I set them up with like a little kind of email at the end that was supposed to just be like, Hey, thanks for coming. But the email went out the email that went out was thanks for being on the podcast email. Is that right? Yes, that is correct. Wow, my memory is still traps though. I just turned 40 I think I'm getting to the age now where I shouldn't tell people how old I am. Because people in their 20s are gonna be like, there has to be someone younger I can listen to about. But, yeah, but so yeah, it gets that way when you get old. So it feels like that. Right? How old are you? Uh, I think I'm 41. Wow, young. I just found myself saying that to somebody yesterday. And I felt I felt so stupid. But I thought I thought I guess it's my turn in life to say it right. So I, you know, I said, I was like, Look, you know, I know you've This is weird. And you've heard older people say this your whole life and thought they were full of it. I'm like, but you're really young still. And you know, I probably just somebody, so don't act old when you're 41. So you get this email back. That's like thanking you for being on the podcast, and you were generous enough to email back and go, I was on the podcast.

Scott Benner 4:17
But that started us talking a little bit. All right. So how did you find the group meeting?

Unknown Speaker 4:27
Ah, so on the Facebook group for the juice box, and then the, the other closed group or whatever. And I happen to see it on there. So that's why I joined in

Jason 4:42
because it was being made available just to the closed group people. Right, right. I, I see a lot of gosh, this is I feel like this is a dirty word I don't really believe in but I see content creators, panicking trying to keep their audience and they're always Like, you know, I'll make a private Facebook group or you know, I'll come talk to you won't that be exciting? And I think that's weird, but okay. And then they are things to them. That, you know, everyone else doesn't get, and I had been doing these zooms for everybody. And then I thought, well, let me go to the people who are really focused on management stuff and see what you know, they'd like to get together. And that's why I did it just for them, not because I'm trying to exclude anyone else. But I find the conversation to be really kind of lightning, maybe somewhat more than enlightening, you know, just a nice thing to do to get it together with a bunch of people and, you know, hear them talk about stuff that a lot of people don't speak about in your day to day life. Did you talk on the call?

Unknown Speaker 5:48
I did not.

Unknown Speaker 5:50
I always look back on and think I wish I would have but it's it's a little intimidating, especially, you know, since I had really just first time being on that zoom call. And there were a lot of people there definitely seemed more experienced with dealing with with you, and everything.

Scott Benner 6:14
So I was slightly afraid to speak. I guess that's interesting. But I need you to dig deeper into dealing with me, what

Unknown Speaker 6:19
do you mean by that? Well, you're definitely a champion guy. And it, uh, you're very knowledgeable about the subject. And sometimes, you know, you're around people that are incredibly knowledgeable, you just want to sit back and listen.

Jason 6:36
But it's kind of a two way street getting that kick off that conversation with you to get you to talk about it. Well, I have to say it sounded more polite, though. A second way You said it. So that's it. I just thought, oh, is there something about me? I don't know. But you know, it's funny in the, in this scenario, or even with the podcast, you know, some people are more chatty than others. And I talk when people aren't talking. And that's right. You know, it's, you're, you're creating something for people to listen to. And, you know, you got to fill the space. So, you know, and people, like you said, have trouble speaking up. Now. Someone listening right now is like, if you shut up, Scott, they'd say something, but I can't take that risk. That's understandable. I mean, yeah, I need what you're good at. So that's why you make the big bucks, please. That's ridiculous. But I do feel like I might be good at it. Nevertheless. So let's, let's find out a little bit about now, when you were diagnosed. Jimmy, you're 41. Now? How old were you when this happen? But you want to dig a little bit deeper than that and go back to my family history of it. Well, Jason 100%. I do if you did, yeah. 100%. Yeah, go ahead. Tell me tell me about about the clan. Let's go back even further. So my grandpa's brother was type one diabetic. And then my grandpa was not but then my dad. He was diagnosed at three and a half years old. With type one diabetes. That would have been like in 1956 ish. Okay. And he married my mom decided to split out two kids. And my younger sister was diagnosed to 14 years old with type one. And then, almost two years later, I was diagnosed at the age of 1818. Oh, yeah. Was there a specter after your sister was diagnosed? Like, I'm gonna get this too?

Unknown Speaker 8:40
No, I don't think so.

Jason 8:43
You know, I was 18 years old. didn't really think anything could happen to me. I look at my son sometimes. And I think I wonder if he thinks about it. And then I realize, I think just like you just said, I think it's his age. He doesn't imagine anything could ever happened to him. You know, so right. I don't I don't think it creeps. I'm just interested if people live with that kind of feeling of it's coming. Did you know your grandfather's brother? That would be a weird thing to know your grandfather's brother, wouldn't it? No, I didn't. I have no recollection of him at all. So, you know, now I'm just sitting here thinking, do I know my grandparents siblings? And I definitely don't. Right, that must be that must be worthy. The family picnic line ends where we go. Grandma and Grandpa can come but definitely not grandpa's dad. Now he can't possibly be alive still. And definitely his brother. We don't know him that well. It seemed a little creepy. But so it's it's the your father's Jesus your father's grant. Your father's father's brother. Your father. Wow. And then your How is your sister making out? Do you guys talk about diabetes together?

Unknown Speaker 9:54
Not Not too much. I think you know, we certainly jumped on the other part of it. Rabbit Hole either?

Scott Benner 10:01
No, good, good. I'm just interested if you if the two of you have some sort of deep connection, if you don't roll on, go to something else.

Unknown Speaker 10:10
I don't think we've ever really talked about it too much until recently. And the reason it's been recent more recently is because my wife and I have three children. And two of those children are type one.

Scott Benner 10:26
Okay, all right. I will keep thinking. She's like a little type one factory over there.

Unknown Speaker 10:34
yards, left and right there all around.

Scott Benner 10:36
What else? You guys good at making crochet anything? underwater basket weaving. Finally, finally, that artists coming into focus? That's right. So tell me about your first child who was diagnosed.

Unknown Speaker 10:50
Or oldest boy Wesley, he was diagnosed at two and a half years old. We caught it pretty quick, you know, because I'm hyper aware of the symptoms. And then our middle child, Cooper was diagnosed at 11 months old.

Scott Benner 11:11
Diving right in wasting Now, what's the time at all? Is there a difference between managing a two year old and an 11 month old?

Unknown Speaker 11:21
Yeah, I was thinking back on that. And I hardly remember how in the world, we took care of 11 month old with type one. But, uh, it was really just very small amounts of insulin to keep him alive. And

Scott Benner 11:38
it's just constant finger checks at that point in time. How much of your personal experience translates to the kids?

Unknown Speaker 11:47
My wife would tell you too much.

Unknown Speaker 11:51
I tend to, you know, lead the charge and all this and sometimes my decisions in my life have impacted their their care. But for the most part, I've always had pretty good control. And I try to, you know, translate that into them. But sometimes my methods for younger children aren't quite as effective.

Jason 12:13
Okay, how, how are they not as well? What do you do for yourself? It doesn't work for them. Also, by the way, I want to let you off the hook on what your wife would say or not say because spouses in general, you know, what are you gonna do whether it was with a wife or a husband? We're all just looking around thinking like, how they do it so wrong all the time. We've just been around too long. You know, all the things that each other do wrong and hard to remember the things that we do, right, sometimes, but but so yeah, but seriously, like, what did you try on the kids that just didn't work?

Unknown Speaker 12:46
I think in general,

Unknown Speaker 12:49
you know, watching watching my dad not handles diabetes well, and watching my sister not handle their diabetes. Well, I was fairly aggressive with it. And I think when the boys were first diagnosed, I may try to look too hard with that. Or gone completely the other way, instead of trying to find that that middle ground. And of course, after starting to listen to you blabber on about type one, it's kind of falling back into the camp that we need to be a little more proactive and aggressive towards it, not just settle for, you know, anyone see lower than 7.5. But the boys in the beginning, I was always always trying to get it down, you know, to where I was hanging out at,

Jason 13:37
which was where low sixes high fives. And it's I mean, 11 month olds, eating schedule even is crazy. You know, to have an 11 month old under, you know, around seven, I think is a major accomplishment, honestly.

Unknown Speaker 13:56
Yeah, yeah. It was a challenge chain, because you have no idea how much you're gonna eat. And I believe at that point in his life, he was strictly on breast milk. So it was like, how many carbs are in them?

Scott Benner 14:10
And how much? How much are they even drinking? Right? You got to get like you have to get a they should make a clear breast for men who are breastfeeding kids with type one. You know how much smokes going through?

Unknown Speaker 14:21
I mean, right?

Scott Benner 14:22
Someone's gotta get on that. Honestly. That's right. How, what kind of management do you use? Like is it just injections within 11 month old with a two year old? What were you doing?

Unknown Speaker 14:33
At that time, when they were first diagnosed, it was strictly with a syringe. And, you know, some human log in there. And that's because we could drop units that were you know, less than a half. That of course we had to lantis at night or in the morning, whatever, at that point in time. Yes.

Scott Benner 14:53
I wonder how long ago was this? When were they to 11 months? How long ago was this? Jesus Wesley, our oldest boy just turned nine.

Unknown Speaker 15:05
So he can do your amazing math. What

Scott Benner 15:07
do you math in your head? 2012 ish. Yeah, about right. Oh my gosh, we're gonna get that was okay, so not that long ago so technology existed. So then that begs the question what technology were you using at the time that they were diagnosed?

Unknown Speaker 15:24
When my boys were diagnosed I was still MDI with a with a pen and I think shortly after Wesley was diagnosed is when I decided hey, I gotta do some for him to make him think that hey pumps are cool. So at that point in time we shut both jumped on the Omni pod index calm and did a didn't change my agency much. And it really didn't affect him too much because he was afraid of it I guess. And we kind of used it for I think maybe a year with him. And I continued on using it after that of course,

Scott Benner 16:08
so when you say didn't change your Awan see much did it change your lows? Did it change how you got here? A one thing?

Unknown Speaker 16:17
Yeah, I experienced you know, you were at Lowe's. I was a little more controlled, say over my hours. Yeah, because you could adjust the rates overnight or whatnot.

Scott Benner 16:30
Maybe you're coming to tier a one See? More honestly.

Unknown Speaker 16:34
I guess. Yeah. That standard deviation or whatever was probably substantially lower after switching to the pump. Gotcha.

Jason 16:43
Yeah, I think it's um how would people know right like people who have super low A onesies but are achieving them because they're overnight they're sleeping and their blood sugar's 55 all night. They don't realize it. Like hey, yeah, you know, what's that? Like? When you when you think I don't need this stuff? Look at my Awan sees 5.8 I'm great, you know, not realizing maybe how it's happening. We're I don't know, maybe realizing it and not wanting to rock the boat just thinking this is okay. Do you think with without your I guess the question is without your child's diagnosis. Do you ever get off MDI do you think?

Unknown Speaker 17:20
I don't think I would have gotten off MDI. If it weren't sure him. I think I would have definitely picked up the Dexcom. Okay, but I don't know if I ever would have went to a pump.

Scott Benner 17:32
So you do the pump initially, just to make it feel comfortable for your kid, but you're still using it. So what did you learn about it that made it stop being for someone else and for you,

Unknown Speaker 17:44
as you know, you could have the better control that throughout the day and didn't have to carry around an insulin pen in my pocket that you know, you reach in and you yank the pen out of your pocket and you pull the cap off and you still have the needle on the end, jab yourself in the leg on the way out.

Scott Benner 18:03
That sounds like a real story being told.

Unknown Speaker 18:06
Yeah, it's uh, and you know, at that point in my life, I was also very self conscious of it, or I wouldn't really tell anybody about it. And sometimes people see like the top of the pens to get out of my pocket. So when you get a giant Sharpie in your pocket for like, just in case, you saw that I'm Banksy. That's right.

Jason 18:29
You caught me. Yes. I'm gonna go make some beautiful artwork on that wall over there. But yeah, so that's interesting to me, though. So as an adult, even an adult with children and a married person, you really just didn't want people to know you had diabetes?

Unknown Speaker 18:44
That's right. And I don't really know why that was the case, I guess. You know, my dad kept it a big secret. My sister she was a little bit more vocal about it. But she also really didn't tell anybody. There's always kind of Hush Hush.

Jason 19:00
So you kind of cap I kind of inferred from what you said earlier that your sister and your dad maybe weren't as diligent. So in that situation, you took what you saw at home, and you changed it. But but for the hiding part that that you hold on to?

Unknown Speaker 19:16
Yeah, most definitely did. If you didn't know me on a personal level, you had no clue that I was you know, type one diabetic just sitting next year, so.

Jason 19:25
So I don't know this, but I'm asking when you live in a situation like that where most people just don't know you have diabetes. Have you ever had something happen to you around strangers, and they just think you're out of your mind and you get away from it and don't explain

Unknown Speaker 19:43
it? I don't think anything like that has ever happened. I do you remember, one of my first jobs I had out of college. I was you know, sitting at my desk working and I was getting low, not really noticing it too much. in mind, my boss comes over to me and asked me to do something. It was, you know, it was a reasonable request. And I just told him, nope, not doing it. And he gave me a funny look. And then he just walked away. And I thought, Oh, crap, you know, I probably should have said that I should probably go get something to drink right now. So I don't I don't know if he was aware of at that point in time, but I'm going to blame the diabetes at that point in time for that incident.

Scott Benner 20:30
That didn't lead you to explain to him what happened.

Unknown Speaker 20:32
No, it didn't.

Jason 20:34
That's how much you want to keep it to yourself. That's right. Yeah, I listen, I can respect one to keep it to yourself. I don't have a, I don't have a horse in that race. You don't I mean, if you want to keep it to yourself, I think that's fine. And if you want to tell everybody you bump into, I don't care. You know, I just think that whatever makes you comfortable, and happy. Now the question is, did it make you happy now that people know is it better that you told somebody or did you like it better private?

Scott Benner 21:12
Have you been on the fence about starting with an insulin pump? You'd like to, but you're just not sure? What if I told you that if you went to my Omni pod comm Ford slash juice box, you could actually get a free 30 day trial of the Omni pod dash. That means you can just take it home and use it for real with like insulin, you might be eligible for that. And the way to find out is by going to my Omni pod comm forward slash juice box. When you get there, you'll just answer a couple of quick questions. And the process will be on its way won't cost you anything. And there's no risk. Here's what you get with on the pod. First of all, it is tubeless meaning you are not connected to anything you wear the Omni pod, and the Omni pod is controlled with a wireless controller. If you're already a pumper, no more jamming stuff in your bra and your pants down your belt. None of that has to happen. No getting your tubing caught on doorknobs, or dresser handles. And of course, you don't have to disconnect to swim bave or to play rough sports. You can just keep the Omni pod on the entire time constantly getting your Basal and so on. And having easy access to Bolus and my Omni pod.com forward slash juice box. Go check it out right now and see what you think no obligation you might be eligible. It'll take you two seconds to find out. A free trial for 30 days is worth looking into. Some other things worth looking into our touch touched by type one. Now you can find them on Facebook and Instagram and it touched by type one.org. It's absolutely my favorite diabetes organization. They would love it if you just took a look nothing to do. It just want you to see what they're about touched by type one.org. And the technology at the core of every decision that we make with insulin is the Dexcom g six continuous glucose monitor. And you can find out more about it@dexcom.com forward slash juice box. Number of great things about that sound. First of all, no more finger sticks, constant readings, getting to see your blood sugar's speed and direction. Giving you insights to things like Pre-Bolus in your meals or how different foods affect your blood sugar. Dexcom also allows you to share your information with up to 10 followers. I have my phone right here, I open it up. I click on the Dexcom app Arden's blood sugar is 92 and stable. I can see that right there on my phone. I did that in real time. And you could as well you know who else could do that? A school nurse, your sister, a friend, your brother, your husband, anybody who you want to give access to. Earlier today I interviewed a woman who's had Type One Diabetes for 50 years. And she told me that the Dexcom is the single greatest tool she's ever seen in the history of managing insulin. That's quite a statement from someone who's been living with type one for five decades. Check it out@dexcom.com forward slash juice box. There's links in the show notes of your podcast player. There are links at Juicebox Podcast comm where you can just type them into your browser on the pod.com forward slash juice box dexcom.com forward slash juice box touched by type one.org. Let's get back to Jason

Unknown Speaker 25:10
I believe I should have been speaking out more about it when I was younger. I don't think people are aware very much of type one diabetes, and I think, you know, just drawing attention to it can help the cause in general, and just have people, you know, have a little more sympathy towards you if you need help.

Jason 25:29
Some understanding really, right, yeah. Wonder what the cause is? Just awareness, right? Just awareness. Yeah, I always just wonder what we expect from the awareness. I always used to dream about it, just being that someone would be able to help Arden if she needed it, like, if enough people knew about type one diabetes, then she wouldn't be in danger in public, which is, of course, kind of a grandiose idea. But I used to think that about the blog, like, I'll reach everybody, and I'll tell everybody about that. Right. And that way, they'll know if our needs help. But I don't know. You know, like, like, like, I'm aware of a lot of things in the world that aren't right. I can't do anything about any of them. And I don't even try. And I wonder what it's like to I guess now I know what it's like to be on the other side of that, like wanting someone to have an understanding about something, but like, what do I want them to do with this understanding? You know, I just want them to know. And I wonder if it? I don't know, I guess it moves things forward and hope you can get donations for things like that. But I don't know how much it matters, or doesn't, I can't I can't quantify it. I agree with you. I just can't quantify what that means. You know.

Unknown Speaker 26:42
And I think, you know, I have a few other friends that have genetic issues, and you know, they post on Facebook, hey, contact your congressman or whatever. And I think in that sense, speaking out, can help draw attention and you know, have real change if you can get more people to contact you know, people to actually have power to make change.

Jason 27:07
You Yeah, no, I agree. Sometimes you just need numbers, right? You just need them. They just show a have a little show of force. And a little little show of concern makes people makes people a little more active. For certain. Alright, so your one kids nine now? Wesley's nine, right. Yeah, I did that without taking notes. You have no idea how proud I am of myself. Does that make Cooper 766? And I remembered Cooper's name. It's a really big moment for me, Jason, just see it. Oh,

Unknown Speaker 27:36
yeah. Good job.

Scott Benner 27:37
I swear to God, like, right now be like Scott heard names. And more than five minutes later, remember them?

Unknown Speaker 27:44
And don't, don't let me tell you our third child's name. Because you write it down and you'll say it wrong.

Scott Benner 27:50
Oh, really? Tell us at the end. Tell me the complete end because I can't fill my head with any more information about that. Seriously. I can remember dad, sister, dad's father's brother. You and the kids. I mean, if you add some one more person, then I'll be lost. But I do want to attract if your youngest child's got a weird name. Is that what you're saying?

Unknown Speaker 28:12
Well, it's it's Elan. I'm sorry.

Scott Benner 28:16
Jesus, how are we going to get people to listen to the end? Well, you know what, the magic? No, this isn't about No, you lost this now you have to come up with something else that they need to know about. At the end of this episode, Jason's gonna tell you how he and his wife conceived all three children. So just hold tight.

Unknown Speaker 28:33
It's a great story.

Jason 28:36
Oh my goodness. So you're kind of in a really interesting space to me. You're a lifer. And a lifer before technology and someone who kind of got drugged to the technology late, you fill a spot in my heart, you make me feel like I'm talking to my friend Mike. So because he was just in the same situation, you know, diagnosed when it was just sort of like take a shot and, you know, then just make sure you eat, if you get dizzy, have some juice, you know, you don't really have a meter, that kind of life. And there's something about the the pathway out of that time and diabetes, that doesn't somehow lead most of you to the next level. And so I really do believe you when you say that without your kids diagnosis, you would have gone on forever like that. What's the disconnect there? Why without their diagnosis, would you have not looked into anything else?

Unknown Speaker 29:36
I think is it really is trying to make things easier for them. I you know, I can run my diabetes, mostly by how I felt and you know, witnessing them kind of start the journey and they have, you know, they're hyper unaware they can't tell you their higher low or how they feel. So I kind of I looked for that technology to help me, which is, you know, it's all kind of weird too, because the I love technology, you know, something is part of my life every day. And I don't know why I didn't not embrace that technology until

Unknown Speaker 30:16
it was kind of forced upon me.

Jason 30:18
I just, you're gonna make me work harder here. Okay, I can say it's fine. Don't worry, I can do it. I need to understand why we're gonna dig it out of you probably end up costing you a divorce. And we'll find out that six bad things happen to you when you were a child that you've been repressing. But No, but seriously, like, Why don't people want to move forward? You know why when Facebook changes the way it looks to so many people have like a stroke online. I can't believe they change this. I liked it the way it was like, What is it about people and change? But specifically around diabetes? Like why do you meet so many people who've had type one for 30 years? And they're just doing it old school, and they couldn't move forward? I used to have these conversations with Mike and he wouldn't, he wouldn't bend. You know, I was like, like, there's so much stuff here. Like you don't know, like a lot of the problems you're having you wouldn't have and, and I couldn't get him to be interested even Is it just the fear of change? Like is it a Is it just the longer process of like, you know, when you're MDI for you hear people talking on the podcast all the time. They're doing injections for a few years. And then they go to switch to a pump. And the fear they have switching to a pump can often be just like the feeling they had when they were first diagnosed. But I mean, it's like the avoidance of that the uncomfortableness if you don't know, you don't know. But then we're gonna have to end the podcast, because there's nothing to talk about, I

Unknown Speaker 31:40
really want to understand

Jason 31:43
it. To me, it's really important. And I'm trying because it's really important, because there are so many people like you who still don't move up to that next kind of plateau. And the people now who believe that their cutting edge, you all got to remember that at some point, you know, what you're doing right now is not going to be cutting edge anymore? And are you going to have the nerve to ascend as these things better? And so I'm trying to figure out why people can't do that.

Unknown Speaker 32:12
I think your the Facebook reference is pretty, pretty accurate, like people, people hate change. And for me, I think it was change. And it's also a habit, you know, my habit was formed after you know, 1000s and 1000s of injections with a pen or a needle. And it takes a lot of effort to, to break that habit. And it's not like a, I was afraid of a pump, I don't think I was ever afraid of a pump. It was just, I'm used to this is how it is. And this is just how it's gonna be. And it was working for me just fine. You know, my agency was good. And then you know, every time I went to see my doctor, he's just say you're doing good. Thanks for stopping by. Continue doing what you're doing. Doc is really in push it on me. Nobody else pushed it on me. Nobody suggested it. There was no Scott talking to me on a podcast, to listen to you back then to say, hey, there's this cool stuff out there. You should try. Yeah.

Scott Benner 33:22
Well, that makes sense. I appreciate that. The idea of it being a habit. It makes sense. Did you not even were you not even aware of some of the things you could have been doing?

Unknown Speaker 33:33
I was aware of my sister was on Medtronic, at that point in time, like they switch you to it because their control wasn't good. You know, she was all over the map. And you know, I guess at that point in time, kind of saw the pump as a solution for people that didn't have good control, and not something to

Jason 33:52
enhance control that I already had. That's how it felt for Yeah, yeah. It's funny, I think it depends on who you are. And the doctor, you know, like, if you're, you're, if you happen to be in your sister's position, then somebody might say, well try a pump, this might help. And I've also heard people say, you can't have a pump until you figure out how to do it on your own, which doesn't make sense to me very much. But the pump being mainly a delivery system is, you know, I don't understand why somebody can't have a pump if they're struggling with MDI, but right, I guess if you're struggling, the hope would be it would help you do better. And if you're doing, you know, good, you know, better than that, and so on and so forth, and down into fine tuning to me, there's got to be a place where you can't just do any better. Hopefully, we'll all get to that where the technology is just gets us all to a spot where you just couldn't possibly do any better. Right? Did your sister have bad experiences that came to you by any chance or no?

Unknown Speaker 34:49
No, I think well, I sat down talking to my mom about this not too long ago. Like our stories are between my sister and I are completely different. She Just kind of follow more along lines, my dad's footsteps and didn't really care too much about it didn't put much effort into it. And then, you know, I saw that and thought, well, that's not the way it's gonna go. Oh, good for you.

Jason 35:18
That said, it's a big leap to make, you know, it really is to break a tradition that of a family tradition of any kind is not easy to do so, right. Yeah, that's I, I am as happy for you about it, as I think that it's, you know, probably one of those things you can't really even put on your sister. You don't I mean, it's just, you just learned by seeing things. And now you're trying to make this experience for your kids. You know, even better than that, and is that working?

Unknown Speaker 35:45
I don't know how aware other than the fact that they know they have diabetes, that they are. Like, when we first tried the Omni pod on Wesley, it was three or three and a half or something like that. You know, he was just scared to death of the clicking that, you know, it makes what is priming. And that kind of scared you away from it. And then you know, him talking about being scared about it made his brother scared about it, whether we could actually talk to both of them about it. And not until recently here until two weeks ago, we started talking to him about it again. And now Wesley's kind of saying, hey, it is I maybe I do want a pump. So we're in the process of getting that ball rolling again to see if we can

Unknown Speaker 36:33
get an omni pot on him.

Scott Benner 36:35
That's excellent. And he came to it on his own.

Unknown Speaker 36:38
Well, you know, I planted the seeds.

Scott Benner 36:42
Are you planting them? Or were they just planted? Oh, they

Unknown Speaker 36:45
were just planted. You know, I just drop subtle hints here and there. And he's, you know, starting to come around to the light side of things. And

Jason 36:56
he seems to be interested in now. As you know, I'm a fan of that in parenting. It's right. It's a little bit of just, you know, stealthy mention here, let it go for a while bring it back up again. Try not to be too obvious while you're doing it. It's harder as they get older not to be obvious, but you got a good spot there for for that and you're saving yourself all kinds of money because no bribery was necessary.

Unknown Speaker 37:23
That's right.

Jason 37:25
Well, there's there's been some talk about that, too. So there has been talk of bribery. Yeah, we'll say you know, if you did good for a month might might get the Harry Potter Lego set. So nice. We'll see how it goes. Give it a try. See what happens. I I couldn't agree more. Honestly, I used to say on the podcast all the time, and I haven't said it in a while I don't think but I find it odd to let children make medical decisions. They got I hear the argument. It's their body. Don't make them do it if you don't want I'm not saying that. Like if someone's having some crazy adverse reaction to the idea of wearing an insulin pump. Like I'm not saying force them to do it. I don't even mean that in the tiniest bit. But if it's an ambivalence, and you can massage the situation, I don't I don't see why not. And I and I just I don't know like I just I've said it a million times there was a pill that was keeping your kids alive. And they didn't want to take it like would you just go well it's his body doesn't want to take it seems weird to me to you know, so I'm not that I can't do really well on MDI. I'm not saying that I'm just saying if there's a better way for you It's weird to put a seven year old in charge of that decision

Unknown Speaker 38:34
Yeah, I think with our decision to stop down he applied originally was it was it was really getting down to like a knock down drag out fight to get a pot on him. And you know, it wasn't worth the struggle at that point in time. It was it was tears crying running heightened running. How old was he at that point?

Unknown Speaker 38:56
Three and a half.

Unknown Speaker 38:59
I don't know i'm i'm somehow amused by the idea of a diaper child like just blowing the house yelling they do they have superhuman strength to at that age. So

Jason 39:13
I know for their size. Like they could you feel like you really put them to the test till you ask him to roof the house or something they really can't. That's right. They're basically useless. Honestly. I mean, again, smart decision, just you know, follow the comfortable path and now look your back, you know, so I'm down with that idea for certain how you said earlier that your your wife thought maybe in the beginning that some of your ideas were a little aggressive but now that the kids have had it for a while? Do you have a harmonious management style the two of you together?

Unknown Speaker 39:47
Dear you are you guys hearing wife having a harmonious relationship about the control.

Jason 39:55
Jason, how long have you been married 10 years, almost. Man, you gotta go slower, take some more deep breath. No, I mean, harmonious is probably a strange word to use. But I think that we both basically agree on what we're doing. I don't think that I'm bolusing. And she's sitting off to the side going, Oh, I wish this wasn't happening this way. I think that she doesn't maybe understand some of the aspects that I do, as well. But I think we're on the same page, at the very least, are you on the same page? Or?

Unknown Speaker 40:31
Brother? Yeah, we're in the same chapter. I think sometimes I take steps without, you know, consulting her first, you know, what are the changes or adjustments, which, you know, I should do a better job of sometimes I, you know, step outside of that box and make some changes, well, telling her and that kind of, you know, rubs her the wrong way, which is understandable.

Scott Benner 40:55
sentence I, I'm, I'll tell you, if you haven't been married for a while you didn't hear it. But Jason just said, which I should do a better job of that's that right there. Jason has been brainwashed in case you're wondering. He's been, he's been told that he doesn't do a good enough job so many times that he either believes it or can say it with conviction want to be right.

Unknown Speaker 41:16
It's very true.

Scott Benner 41:17
Not that everyone can do a better job. I'm not saying that. I'm just saying that there was there was a tone in your voice. It was like this is the part where I say I could do better. Just in case, my wife hears this, which now I'm assuming you're not going to let her hear but I

Unknown Speaker 41:34
try keep telling her to listen, and I'm going to tell her not to listen.

Scott Benner 41:37
Well, that's interesting, that she not listened to the podcast.

Unknown Speaker 41:40
She doesn't know she, she her job doesn't really allow her to listen to you in the background, like, like I do. Their lives are pretty hectic otherwise. And I don't think she has a whole lot of time to sit down. Listen to you for two hours a week or whatever it is. You have a full time job. Yeah.

Scott Benner 42:01
Could she cut back the part time to help the podcast?

Unknown Speaker 42:04
Oh, um, no, no, she brings home the bacon here. So Oh, okay. We need to work

Scott Benner 42:09
on that. I understand it, I see what you're saying. Yeah.

Unknown Speaker 42:14
I see which way this is happening. I see why you were so good at saying I need to do a better job. That's right. Give you don't do a better job at that you're gonna have to do a better job at making

Unknown Speaker 42:22
money. That's true.

Jason 42:25
Don't worry, I feel exactly the same way. Don't worry. No, that's cool. Obviously, everybody doesn't everybody's life doesn't fit in. But I mean, those of you who are not listening as much as I would like you to because of work. I would like really for you to consider just not working. So you could listen to the podcast more frequently. I mean, make it reasonable.

Unknown Speaker 42:44
It's not a solid plan, solid plan, make

Scott Benner 42:46
some adjustments to help the podcast out with me if you can.

Unknown Speaker 42:50
That's right.

Jason 42:51
What are you doing? I have, you know, I've got plans, I need you to list. I mean, all of those bills are so important. Like pick one you don't need get rid of Hulu. Who, who needs to who needs to pay for insulin or anything when we listen to the podcast, I don't want you to get rid of the big things. I mean, she might have to work nights, you know, just to find some time when other people are sleeping to put together. There's no jobs like that anymore is there where you put together like little things and ship them back to companies and they pay you by the piece? That's a very bad thing to do, right? People are like, Why don't like yeah, there were like these companies who pan made things, they'd ship the pieces to your house, you'd put them together and ship them back to them. And they pay you to like put stuff together. So he's got to grow up pretty broke to know that that exists. But it does. You know, that's great. Well, please tell your wife then. I'm happy, she's happy. And I wish she would listen. And if she listens, of course, nevertheless. And while you're listening, we need two different downloads on two different devices. So that's right, let's be clear, when we when we were making the decisions that need to be made.

Unknown Speaker 44:02
Yeah, I've been planting the seeds if you're just listening to the pro tip series, but uh, we'll see where that goes here.

Scott Benner 44:08
So being being serious about it for a second, do you think that if she just listened to those episodes, for example, that there'd be a marked improvement?

Unknown Speaker 44:20
I think so. This definitely helped me understand things a little bit better. And I think it would get us more on the same page if we have something to talk about other than just our kids. And myself. Yeah, I guess related to related to what you're talking about. Well,

Jason 44:39
I agree with that. I'll tell you what, if I can figure out how to get my wife listen this podcast, I'll let you know. And you can. You can. I wonder if that strikes people oddly, does it seem strange to you that I don't think my wife's ever heard a minute of this. I don't. I'm not surprised by that at all. It's like, you know, she probably juicy enough during the day. You know, now you're starting to sound like my wife, Jason. What's going on? caissons indoctrinated single guys are right now going like, Oh my god, what? I don't want things to happen to me. The other side of it is, there's a lot of good stuff too. But but I think it's in any real relationship. You know, it's tough. You know, I mean, I do hear from people, sometimes you're like, we have a very equal share of management. And we're on the same page, we both listen. So, you know, we can kind of bounce things back and forth. But I think more people fall into the situation you described, where just not everyone has the time. You know, right. makes sense to me. But I have to say, you know, not focusing directly on your wife, but in a bigger way here. I think that the 20 some hours it might take the list of those protests is more than a reasonable investment for return on return. So I mean, that's me. I obviously, am partial to them. And, and I think, I think those those, they do a good job of helping but, but I get it, I really don't. So okay. Well, what are your plans moving forward? Then? Are you thinking about automation? I am currently looping on Android APS. Oh, I don't know why. I don't think a personal APS has ever been on before. Well, well, well, how are you finding that?

Unknown Speaker 46:24
It uh, it's working. Well, I it's, it's not as pretty and nice as lived on on iOS, but it works. Fine. It's got its little quirks.

Jason 46:40
One of the quirks First of all, where are you at in the country? I have to figure out your, your I'm in. Where do you think I'm troubled by my accent here. I Ohio ish. A little bit further west. Listen, I can't now you're gonna prove to me that I don't know what's west of Ohio. That's Chicago. I'm in Iowa. Right in the middle of Iowa. Okay, what the hell's where Chicago? Chicago is, you know, like six hours? east of here. East. I went the wrong way.

Unknown Speaker 47:17
You went the right one.

Scott Benner 47:18
I thought you said West and I guess West. I guess Chicago.

Unknown Speaker 47:22
You keep going further.

Jason 47:24
Okay, all right. I listen, let's not turn this into a geography. Although it probably would be good for all of us if I pulled up a map of the United States right now and described where all the states were? Because apparently, I don't know. And probably nobody else. Let's see. So So yeah, there's just a year there's a little bit of your speech pattern is it's not slow. It's it's paced. Right. And you have a little bit of that non Accent Accent which put me somewhere I felt like midway in the country, but I didn't go quite far enough. So there we go. That's close enough. I wonder how many people in Ohio right now are like we don't sound anything like those people. How could you possibly make that mistake? Yeah, that's all But listen, people in Ohio you have Dave Chappelle. So calm down. You've got plenty. You don't need more. Okay, so you are using an automated it's a DIY automated system. It's called Open APS. Is that right? Android, APS was based on open APS. Android. APS is based on open eight. Okay. So it's, that's interesting, because I had Dana Lewis on a long time ago. Was she involved in Android APS? Or is that not her?

Unknown Speaker 48:43
Okay, I have no clue.

Jason 48:44
I have no clue. Isn't that interesting? I just grabbed it one day, and we're like this works. That's right. Wow, cool. That's really cool down or you're thinking of automation for your kids. So you're going to try on the pod five when it comes out for them? Or what do you thinking? So our insurance, you know, of course, won't cover the dash system. So we can't jump on the horizon bag bandwagon when that comes out. Unless our insurance you know, magically approves it. But uh, in the meantime, my goal is to get them on looped summer garden. And I think that's just going to, like it's helped me out tremendously. Like, overnight, you know, if you saw some other podcasts that I listened to, like, overnight, it's absolutely magical with some sort of automated system handling it when you're sleeping. Yeah. And that would really benefit our boys. Definitely. I think so too. I have to say that as well as loop works, and it really does. There's still something about I don't know if this is just me being silly, but there is still something about it not being not even vetted. It's really Really well vetted. It's just not FDA vetted. And but I don't know, there's something about it just not coming out of the box and working like the idea that if something broke, I, there's no 800 number for me to call and say, Hey, the thing doesn't work anymore. It's just that part of it is very wild, wild west of diabetes sort of feeling, you know, just like, you know, I look at Arden's Riley link, and I think, you know, I mean, what if that breaks, you know, what happens, you know, so, so excuse me, so I went out, and I got another one. And that's, and that's just sitting over there. And I'm staring at it, like, just okay, well, I have it, now something happens. That kind of stuff is strange, you know, like the case on the Reilly link breaks, and we just glue it back together, and it breaks again, and we just pile more glue on top of it until finally one day, it's just a rubber ball of hot glue gun. Like, sometimes I'm like, I wonder if the signal can get through all that hot glue. On that little case together, but but I agree with you, it's you know, overnight, any aiming algorithms overnight are really spectacular. Do you have the same issues around food that people on loop do just that you're you'll see more spikes around food and better control away from it? Often?

Unknown Speaker 51:16
Yeah, you know,

Unknown Speaker 51:19
I try to Pre-Bolus with, you know, the Android APS. And sometimes, you know, I watch what the algorithms doing. I'm thinking to myself, why, why are you doing that? And I've tried to, you know, work around getting those slight spikes after you eat, you know, by disabling a loop for an hour or whatever, and, you know, letting me make the decision instead of the algorithm at that point in time.

Jason 51:45
Now, I, I see it, and it's not perfect, obviously, nothing is, although here's a great example, right now, Arden is at the very end of a pump site. And it needs to be changed. And it will be like when I get done here, I think I'm gonna say to where I think your pump should be changed. But the reason I bring it up is because that I can see that for over like the last eight hours. I think the site's been failing. But the loop keeps pushing more insulin in to take care of the drift up that's trying to happen. If she wasn't on loop. I want on or any algorithm based, like system. I think overnight last night and into the morning, today, I think Arden's blood sugar would have ended up in the mid to hundreds. All right, but instead, every time it tries to get over 120, this thing's just like, Here's more, here's more. And it's happening so much, because like I said, I think the site's just bad. It's, it's kind of all all inspiring, when you look at like, I wish you could just see what I'm looking at right now. She's been getting micro boluses for hours, and hours and hours. And it's doing the job, it's holding her down. That's the kind of little stuff you know, you're going to be amazed by when, you know, horizon, which is called, by the way not called horizon anymore. It's on the pod five, or, you know, even if you're using t slim or whatever you end up using, honestly, yeah, these DIY ones. really spectacular. Like I tried to imagine her as an adult, you know, at noon at lunch at her job and realizing her her sights going bad. She's not going to be home till six o'clock. And this thing's going to be the difference between 100 points in her blood sugar in a situation like that. That is very, very cool. And so is your wife on board with that? Or is this one of these things you'll have to do in the dead of night when no one's looking cover of darkness?

Unknown Speaker 53:43
I think she she's definitely worried about it. She said, so who? Who makes this

Unknown Speaker 53:52
claim on the internet?

Unknown Speaker 53:53
Yeah, it's just keep on the internet. How do you get help?

Scott Benner 53:57
There's a Facebook group. You should have called the Facebook group customer service. There we go. The people on the internet are a highly curated collection of engineering.

Unknown Speaker 54:14
Professionals. See, I fixed it. There we go. I could have used you like two weeks ago.

Scott Benner 54:22
I've been married a lot longer than Jason. That's right. I know how to roll. Actually, I have been married a lot longer than you do you get married late. Or they get married early.

Unknown Speaker 54:30
And probably a little bit of both. Yeah,

Scott Benner 54:32
probably. I know for sure. I was too young. So just finding the right girl Jason.

Unknown Speaker 54:38
Yeah, moved around a little bit. When I decided to move back to Iowa, I decided to maybe it's time to settle down a bit here.

Scott Benner 54:51
What were you doing? drifter cooking meth

Unknown Speaker 54:55
was following another girl at that point in time.

Scott Benner 54:57
Did you know Yeah, where did she drag your ass to?

Unknown Speaker 55:03
Oh, we started in Iowa and she got accepted to grad school in San Diego. So I moved there and that only lasted a year when we were there. So I lived there for a little bit longer. Yes. How can you not pass up? 70 degrees every day?

Scott Benner 55:19
Yeah, you were away from the mic for a second. But I think I took your meeting. It's hard to turn up. It's hard to turn down San Diego San Diego sounds really nice.

Unknown Speaker 55:26
Yeah.

Scott Benner 55:27
Were you like a grad school house husband, what do you do? Cook did the cleaning.

Unknown Speaker 55:33
You know, at that point in time, I

Scott Benner 55:34
was the breadwinner, you know, as work and you know, supporting this. I call that when I was saying there's a person out in the world somewhere living off your hard work who is just like,

Unknown Speaker 55:46
Yeah, something.

Scott Benner 55:48
That's interesting, did you and this has nothing to do with anything but did you imagine the two of you were getting would get married?

Unknown Speaker 55:55
At that point in my life?

Unknown Speaker 55:56
I thought that was a high possibility. And I wouldn't have moved, you know, halfway across the country just

Jason 56:03
for girls smiled at you in a bar once. Yeah, that's right. I would have I'm just I definitely wouldn't have but uh, but I could see it happening for certain. That's interesting. So then when that falls apart, or dissolves mutually, or whatever, Angelina Jolie called it What did what did that? Know? was it who what famous person said they were consciously uncoupling? Oh, it's called playboy and the girl from the Marvel movies whose mom and dad are famous. Come on Gwyneth Paltrow. There we go. Right. Exactly. That's exactly what it was like. You all just got an incredible look into how my brain finds answers. But during the cold playboy, and the woman from the Marvel movies whose parents were famous, got me to palestra, just in case, you're wondering what mental illness actually looks like. So yeah, so were you consciously uncoupled? Or did or did the lock on the door get changed, or whatever. And then you just had it right back to Iowa.

Unknown Speaker 57:04
It was more along the lines of you know, the lock on the door got changed, except she was gone. She went on a trip with her classmates. And when she came back, that's when the bomb was dropped

Scott Benner 57:18
from being a boy, I know because they'd be in a woman socks. And it does in a lot of ways. I don't want to take it from you. But it sucks to be a boy. So Well, okay, so you just took a long, lonely drive across country just weeping into your steering wheel. And then

Unknown Speaker 57:35
now I asked you what that looks like the first year that were out there when that happened. And I see out there another three years until I ran out of money.

Scott Benner 57:44
You made it three more years with San Diego. Yeah, it sounds Is it beautiful to live there?

Unknown Speaker 57:49
It is. I mean, it's 70 degrees almost every day. Fog burns off by noon. Yet the ocean you know, a 15 minute drive away. You just have to be wealthy to stay there is that pretty much? That's right. Yeah. All

Scott Benner 58:01
right. Well, that makes sense. What kind of work do you do?

Unknown Speaker 58:04
I am a photographer. And I also do some drafting on the computer. Nice.

Scott Benner 58:10
What kind of photography? I do weddings is calling. Who's calling you while we're doing?

Unknown Speaker 58:18
I have no idea.

Unknown Speaker 58:19
The understand.

Scott Benner 58:22
text them back us angry letter. Tell them I said so.

Unknown Speaker 58:27
There we go. I don't have the readings gotten out of here. So anyway, what kind of photography do I do? I do. I do some I used to do a lot of weddings. But weddings are a ton of work and get tired and a ton of work on you know, really hot days. Now I do like high school seniors, families, things like that. And then I don't know if you remember my post in the juice box. Facebook group page there. me holding the jdrf Bear.

Scott Benner 59:02
You often use that as a cover art. So please send me the original please. Did you? Did you take that photo? I didn't take that photo. How do you take a photo of you holding something, Jason? And if you set the camera up on a little timer thing,

Unknown Speaker 59:18
podcast some tricks for that. But yeah, it was on a timer and I was running back and forth between my chair and the camera, you know, 100 times at night then had everything set up and yeah, at least got one good photo out of it.

Scott Benner 59:29
Nice. Do you shoot digitally I imagine now does anyone anymore?

Unknown Speaker 59:34
Oh, you know, there's

Unknown Speaker 59:35
so many hipsters are still on but you know, 99% of the world's you know, doing digital for paid work.

Jason 59:43
If you ever see Jason Lee on Instagram. I have not know he's, I guess pretty heavily into photography. And I'm wondering if he's not shooting on film based on some of his pictures but he used to be on My Name Is Earl so he got to put out a book of his photography but it's pretty interesting. Nevertheless, I think photography is something actually kind of, oddly to bring this into a weird figure eight circle. My friend Mike taught me about photography when we were kids. And we were, he was taking it in college. And I was often the guy who would like do weird things like drive his car at him really fast. So he could work with like shutters and things like that, and then swerve away from an adult in a second. Right? And one time, he contacted me and said, Hey, I'm supposed to shoot sports. But Mike, you know, didn't know anything about sports at all. None of them. He just was not a not not a person into sports. And I said, well, the Philadelphia Eagles have training camp like an hour from here, we could like pay a couple of bucks stand off to the side, and you could shoot professional football players. That would be pretty, you know, I mean, that's the best thing I can imagine for the cheapest, you know, it'll give you real access, and you can move around and everything. Right? So I drove him there. And he's taking pictures for 10 minutes. And he comes back to me, he goes, we can leave whenever you want. And I said, you're done. And he goes, I can't do it. I was like, Why can he goes, I don't understand what they're doing. And I'm like, so he didn't, he so didn't understand football. He didn't know where anybody was going to be. He didn't understand the action. He didn't understand the pace, like none of it. So he was just, you know, shooting on film and taking these pictures of nothing, you know, he's like, this is a waste of time. It's a waste of film. Like, I can't get this, let's go. So I said, Let me try. And I had never held a 35 millimeter camera in my life, having grown up incredibly poor. And so he said a lot for me. And I just, you know, it was point shoot after he set the camera up for me. And a few weeks later, he comes to my house with this, you know, big manila envelope full of these eight by 10s. And he goes, here's all the great pictures you took of the football guys, the football guys, you know. And I was like, thank you. And I took them out. I was like, are these good? And he goes, Well, my teacher thought they were great. And I said, Oh, cool. I said, Did you take credit for my pictures? He goes, No, I didn't. I was, like I said, you could have you know, but it turned out like in that moment, I just I started really enjoying taking photos of things. And one time, I was saying this to Mike's mother of all people. And I said I don't understand how the camera works at all. I don't know what any of these settings do. I don't even care to understand. I just I feel like I know where to point it and when to push the button. And she was flipping through my pictures. She goes, Well, you're really good at this part. And I said, Oh, thank you like, and so he should take pictures all the time. And now that my kids are older, I have a pretty decent camera here that I don't see quite often enough. But I have a lot of pictures around the house that remind me of that time and of Mike actually, because this family was huge about putting photos up in their home. And I always used to love that about them. I'd go into their house, and they just had there were pictures everywhere. And I've tried to adopt that a little bit, I guess in in Mike's memory and his family for showing that to me. But yeah, I don't understand how a camera works at all. But I am I'm pretty good at pointing other people. So I'm sure you're much better the the other stuff. Yeah, taking pictures part is pretty easy. To me. It's the run the business part of things. It's the challenge. It sucks, doesn't it? Like I know, times when I have to send invoices out for the podcast, and I'm just like, Oh, my wife's like, isn't the point of making the podcast? I'm like, No, the point I'm making for the podcast. I was like selling the ads is is a necessity. But I hate this part. You know, I really don't feel good about that. But do you ever just screw yourself out of money just sitting there waiting too long and stuff like that? Oh, most definitely. That's when I you know, I get that talk from my wife. Well, Jason, you need to do a better job of that. That's right. I do need to do a better job of that. Thanks for reminding me there's a strong possibility This episode is gonna be called Jason needs to do a better job. Oh. My goodness. Well, is there anything that we did not cover that you were hoping to?

Unknown Speaker 1:04:23
I don't think there's anything else unless you have some

Jason 1:04:26
great idea here. Oh, all my ideas are great. Jason. That's the first thing and secondly, I don't I just this was a nice conversation that I didn't have a lot of like preconceived expectation for which are my favorite kinds honestly. I guess I do wonder though, about your third child a little bit. So tell me tell me your third child's name.

Unknown Speaker 1:04:54
That's a Elan Elan Yes, spell my e li n see my seat. ballin, boy girl,

Unknown Speaker 1:05:01
girl.

Scott Benner 1:05:02
I thought so saying Alright, so little Elan is how old she is. Two and a half. Okay, so she's in between the first diagnosis age and the second diagnosis age.

Unknown Speaker 1:05:15
Yeah, she's she's within that

Scott Benner 1:05:16
range. Do you stare at her like a mental vacation most of the day wondering if she's gonna get that

Unknown Speaker 1:05:23
we often wonder about the you know, we pay attention to, you know how much she's drinking, and when she's going to the bathroom. Like it's always in the back of my head. And it's always in the back of my wife's head.

Unknown Speaker 1:05:37
Also.

Jason 1:05:39
Don't think we have sorry, we have tested her finger multiple times. So is it ever showing you anything concerning it's only showing me that she has a fully functioning pancreas? Nice. That's excellent. I have to say now I can't joke about your wife not working because there are three diabetics in the house. I want her working full time. Non Stop making money for the what I'm assuming is just a cooler full of insulin in your refrigerator. So

Unknown Speaker 1:06:10
we have you know, more than that little butter drawer whatever it is on the side of your refrigerator full of insulin.

Scott Benner 1:06:18
Yeah, you the butter compartments, not big enough for you guys. You

Unknown Speaker 1:06:20
need the tray, the deli compartment. And we have a whole 36 inch wide upper cabinet that is full of pump supplies for me and Dexcom sensors and

Scott Benner 1:06:33
I bet it's tough man. It's a it's a big expense I feel for you. It really I mean not to make light of it. It's really a it's a lot. Do you guys all use the same insulin? Or is it just are there different kinds

Unknown Speaker 1:06:45
of different kinds?

Jason 1:06:47
Both the boys are on Nova log in Lantus. And then I'm just on Chima log. Yeah, well, if this Armageddon thing happens, you're gonna have to get a shotgun because anybody who realizes there's three diabetics in your house is coming to you first for insulin. They're gonna skip right over. They'll be like, no, there'll be more at Jason's house than at the pharmacy. Let's go.

Unknown Speaker 1:07:07
That's right. Oh, my goodness. Wait, where's freedom drive? We pick up our prescriptions like, do we have enough of that to give you right now?

Scott Benner 1:07:15
The pharmacy looks a little nervous when you get there. Yeah. Tell the other people with diabetes to wait till tomorrow, Jason. No kidding. That's really interesting, man. It really is. Alright. Well, I really appreciate you doing this. Thank you for taking the time and for telling me so many things that I think you're gonna make. eventually get you in trouble with your wife. So probably, yeah, yeah, I really don't think we should tell her about this. And you know, or you can give her give her another episode. Listen to be like, that's right.

Unknown Speaker 1:07:45
She hears me enough. So,

Scott Benner 1:07:46
yeah, now I get that feeling too when I'm talking to my wife. That she's like, yeah, your bullshit. Old, long, long time ago. You go tell those people on that podcast, something. I don't care. I'm making her sound bad. She's not a bad person. She's lovely, actually. But it's not funny to say she's lovely. Jason. There's

Unknown Speaker 1:08:07
no wind in that for me. Really? You know, you're you're on you don't have anything to fear because she doesn't listen to the podcast. So Right, right.

Jason 1:08:14
Hey, listen, at the end of this just in case you want to say anything really lovely to your wife that would be endearing, just in case she makes it this far. She makes it this far. She is young and beautiful. And she is very knowledgeable about what should be done to take care of our boys. And the girl that you went to San Diego with she was a huge mistake and probably just not worth it at all right? That's right. Right. That would not be would not be where I'm at without it. Yeah, well, Jason, you need to do better. That's all I can say. I'm sorry. No, don't see that. See how good that was? Is everyone listening? He said I'm sorry before he even knew what he was apologizing for. You're good at this. You're gonna married forever. I don't know if that sounds good or bad to you. So I'm gonna let you go now. Alright, well, tune in next week when we'll say horrible things about marriage some more for reasons that are just for comedy, because it's fun. Anyway, hold on. Hold on one second. Jason, I want to thank you when we're not recording.

Scott Benner 1:09:24
Hey, huge thanks to Jason for coming on the show and sharing his story. Thanks also to touched by type one Omnipod and Dexcom find out more about the Dexcom g six continuous glucose monitor@dexcom.com forward slash juice box. Look into the possibility of that free 30 day trial of the Omni pod dash at Omni pod.com Ford slash juicebox. And of course, check out touched by type one at touched by type one.org. They're also on Facebook and Instagram.

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#460 Defining Diabetes: MODY Diabetes

Scott and Jenny Smith define diabetes terms

In this Defining Diabetes episode, Scott and Jenny explain MODY Diabetes (Maturity Onset Diabetes of the Young)

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

---

DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to Episode 460 of the Juicebox Podcast today is another in the defining diabetes series. It's short, it's sweet, and it's informative.

I've been defining diabetes here on the Juicebox Podcast for ever It feels like and I've done simple terms like Pre-Bolus a one c, Basal and Bolus. We also talked about honeymooning and things that people don't like to talk about. We've defined non compliant, brittle diabetes, and even talked about terms that are specific to the podcast like stopping the arrows trust will happen feeding insulin bumping and nudging. These episodes are chock full of good information. They're short and digestible. And if that wasn't enough, they're made even better with the presence of Jenny Smith, my friend and certified diabetes educator who helps me on these and the pro tip episodes. So today, Jenny and I are going to define Modi diabetes, Mo d y. While you're listening to that definition, with Jenny and I, 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. were becoming bold with insulin.

If you enjoy this episode, look for the other defining diabetes episodes. Right there in your podcast player, you can just search Juicebox Podcast defining diabetes, and you will get a super long list of them. You can also find them at Juicebox Podcast calm and diabetes pro tip com. Speaking of websites, if you go to integrated diabetes comm you'll be at the place where Jennifer Smith works. There you'll learn things like Jennifer Smith has had Type One Diabetes since she was a child. Did you know that it's true over 30 years Jenny's had type one, she holds a bachelor's degree in human nutrition and biology from the University of Wisconsin. She's a registered and licensed dietitian and certified diabetes educator and a certified trainer on most makes and models of insulin pumps, and continuous glucose monitoring system. She also cheats at Scrabble. That's not true. I just never say anything bad about Jenny. And I thought that would be funny. But even as I said it, it felt wrong. Not gonna have a bunch of ads today just want to remind you to go to the T one D exchange, fill out their survey, help other people with type one diabetes, it is free for you, of course, because you're the one doing the thing. It is 100% HIPAA compliant. It is 1,000% anonymous. And if you want to remove your answers at any time, you can so easy thing to do. Why would you do this? Because the decisions that are made with your answers help people living with Type One Diabetes, all you need to be is a type one who's living in America, or the caregiver of a type one who lives in the United States. And you can go do this right now. T one d exchange.org. forward slash juicebox. Everyone who completes the survey is benefiting people living with type one diabetes, and you're benefiting the show a little bit too. So thank you for that. Okay, so we'll move on to the next one, which is Modi. So I can only recall he thought it was interesting. Yeah. Because this is even worse, right? I mean, more word like so maturity onset diabetes of the young. Mm hmm. See now Jenny, right off the bat. It says mature and young at the same time. These words don't go together. What does this know?

Jennifer Smith, CDE 3:50
And I've thought that myself, okay. I don't think I don't love Modi title or what it what it stands for, because you're right, mature and young. How do those go together really the diagnostic typical age. This is where it comes from is somewhere between about like 10, like pre puberty all the way through like the mid 40s. So your like kind of second decade through the fourth fifth ish decade of life is the typical diagnostic time period. Formally, okay. Okay. I've worked with only two people with Modi. Both of them I've worked with through pregnancy. Okay. And it's been really interesting. I mean, one who has had Modi she was diagnosed very early as a child with Modi had really good like, I guess, like tracking care in terms of like, you know how to manage. But it's a really, it's interesting because it's very rare. This is where Modi is similar, more similar to like that type two, in that there's not a, there's not an autoimmune component to it. So in, if you're checking antibodies, somebody with Modi may look, the type one, Ill, but they won't have antibodies

Scott Benner 5:25
type two. So this is just from Harvard health. But it says maturity onset diabetes of the young Modi is an inherited form of diabetes mellitus is caused by a change in one of 11 genes, up to 5% of all diabetes cases may be due to Modi. Just like other people, diabetes, people with Modi have trouble regulating their blood sugar levels. So like,

Jennifer Smith, CDE 5:47
and this is another I don't know if this is in your facts. But I remember reading not long ago, that I believe it's adults who are diagnosed with type one, almost, I think it's 80% of them have actual, like, Modi I would have to relook for that fact. But I, I'm sure it's struck me I was like, really, does that mean that a lot of people like walking around with like adult like, it was a really interesting fact, I'll have to look for it. Again. If I can find it

Scott Benner 6:23
says here that it's a it's a monogenic disease, meaning that it's caused by a single gene mutation. So you actually have a gene changes, one of 11 genes changes, it could be any number, any one of those 11. And now suddenly, I have all the same symptoms of somebody with Type One Diabetes. That's, that's kind of up. We'll just bleep that out later. But there shouldn't be multiple ways to end up with it should just be one way. How is it diagnosed a blood sugar test? So it's the same thing really like? So there could be tons of people who have this who don't know it, because it just it looks exactly like type one that would come autoimmune.

Jennifer Smith, CDE 7:06
It does. Oftentimes, though, and this is where proper diagnosis is really important. Because the different types of medication management for Modi differ depending on that genetic mutation, like the reason for their Modi really, some of them do very, very well, if diagnosed correctly, more so on oral medications and lifestyle change much similar to a type two, oh, and then there are some that do much better with other like insulin, may nessus, may be needed more similar to a type one, but they don't have they don't have that antibody component that would designate them truly as type one.

Scott Benner 7:52
No kidding. Well, that's weird.

Jennifer Smith, CDE 7:54
Yeah. And the other interesting thing is the C peptides, which sort of are a measure of your own pancreatic beta cell action, and like pop out of insulin, right, in someone with Modi, as well as with type two, they have normal range of beta cell action, they have normal range of C peptide levels, whereas in somebody with type one, their c peptide levels are below a normal level or almost undetectable.

Unknown Speaker 8:33
So

Scott Benner 8:33
I feel like if you tell me that we have described Modi completely, that we're going to take a little minute here and do this again with C peptide. Can you do that?

Unknown Speaker 8:45
Sure. Yeah.

Scott Benner 8:46
All right. Yeah. Do you think we did Modi? Okay.

Jennifer Smith, CDE 8:49
I think so. I mean, from the general of what we can give to people there are, there are very they're very few, I guess, good plate. I know that I think it's the University of Chicago that actually has a Modi tracking system so that you can actually they log patients who have diagnosed Modi, which is interesting. But yeah, I think in definition, I think we did a good job.

Scott Benner 9:20
Thank you. And it looks like something I just thank you. Like I said anything except the only thing I had listened to everybody listening knows the only thing I added to this was I said the Jenny, I think we should define Modi in one of the episodes Other than that, I've got nothing to do with this. But I did just Google Modi testing. And quest diagnostics is a laboratory that I think is all over America. And it's funny how they're starting to pop up because they describe all the testing they do. So there is a test for it. So a doctor can do a blood to draw that would tell you and they have a couple of little pieces of information it says Modi 2% of all diabetes cases. So they think there's a half a million people with AI with Modi and 90% of Modi cases are mis diagnosed type one or type two. Well, yeah,

Unknown Speaker 10:08
there. There it is. Yeah. Okay, something right.

Scott Benner 10:11
All right, cool. Huge thanks to Jenny for lending her brilliance to the Juicebox Podcast. Don't forget to check her out at integrated diabetes comm you can actually hire Jenny and she'll help you with your diabetes. Thanks also to all the sponsors that I didn't mention today. And what else, check out the T one D exchange a T one d exchange.org Ford slash juice box. Take the survey, fill it out, help people with type one diabetes help the show feel good about yourself takes a few minutes to do something nice. If you hold on for a second after the music, I'll go over where the diabetes pro tip episodes are. The defining diabetes episodes how you can listen in a podcast player if you're listening online and all the other stuff that new listeners and interested parties should know. So here's how it goes. If you want to check out the Omni pod, the Dexcom de veau hypo pen, T one D exchange touched by type one with a Contour Next One blood glucose meter, I'd appreciate it if you use my links. They're right there in the podcast player show notes. You can also find them at Juicebox Podcast comm where you can type them into a browser. And at the very end of this, I'll leave them if you want to hear them. But I imagine you're gonna shut it off before I say that. But still, I'll put them there for you. Now the diabetes pro tip episodes, for those of you who listen in a podcast player, they're right there. You can just search diabetes pro tip, and the words Juicebox Podcast and you're going to get them all. But you can also find them at diabetes pro tip.com. When you get there, you're going to see that they that the pro tip episodes begin at Episode 210 with an episode called diabetes pro tip newly diagnosed or starting over. And then they go on for their protests began back in February of 2019. And there was a new one put up as recently as March 5 2021. So it's a really great list of episodes that will help you manage your diabetes, the way you hear us talking about it here. And these defining diabetes episodes are also incredibly helpful. Right now the way diabetes pro tip comm is set up. If you scroll down a little bit, you can find those as well. There's also ask Scott and Jenny shows the latest episodes of the podcast. It's all right there. Actually. There's also links to places where you can listen through an app. So I know some people don't listen to a lot of podcasts. And this could be new for them. But you can listen in a free application. If you're on Apple, Spotify, amazon music, Google podcasts, Pandora, any apps that are available on Android, just keep in mind that podcast apps should not cost you money. So my links will take you to a number of apps that are free and work great. Otherwise, you can listen pretty much anywhere you get audio. If you're listening in an app now please like follow subscribe, whatever your app allows you to do. And you will get three new episodes of the Juicebox Podcast every week to choose from, even listen to them all. Listen to some of them. Whatever works best for you. If you're looking for people chatting about management, you should look no farther than the Facebook page for the Juicebox Podcast. It's called Juicebox Podcast type one diabetes. It's a private group. So you can talk freely. Go find that if you're looking for a 10,000 users now. It's a really terrific place to talk about using insulin, and all the things that come up when you have type one. I'm also on Instagram. I don't do much on Twitter, but it's there at Juicebox Podcast. And let me just say thank you one more time, it's the end of March 2021. This month, did 120% better than march of 2015. This was the most downloaded month in the history of the podcast. In fact, it had 15.38% more downloads than the previous month, February 2021. So let me thank you again for sharing the show for subscribing in a podcast app. And for generally just being the most supportive group of people I could ever hope for. I'll talk to you soon. I should be back in like two days with another episode. So hold tight. There's more coming

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The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

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#459 Marrying Diabetes

Kristen and Jay got married.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

---

**DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

I just want to remind you if you're looking for the Define diabetes episodes, or the pro tip series, they're all right there in your podcast player, just search defining diabetes. We're diabetes pro tip, you can also find them at Juicebox Podcast COMM And if you need a list of them and actually even if you want to listen online, diabetes pro tip.com is where you'll find them. Okay, a little more to do and then we'll get started.

This show is sponsored today by the glucagon that my daughter carries g vo Kibo pen. Find out more at G Vogue glucagon.com forward slash juice box. This episode is also sponsored by the Contour Next One blood glucose meter and you can find out more at Contour Next one.com forward slash juice box. There's a lot going on at that link. Don't make the mistake of not checking it out. You're going to get a great meter. That's incredibly accurate, easy to use. And there's a lot more at that link. I'm not kidding test strip programs, you may even be eligible for a free meter. Go take a look. Contour Next one.com forward slash juicebox.

Kristen 2:07
My name is Kristen and my husband Jay was diagnosed with Type One Diabetes in September of 2017.

Scott Benner 2:17
September of 2017, September 2018, a year and a half ish, right a year and a half ish. How long have you guys been married?

Kristen 2:25
We've only been married about a year but we've been together for 910 years.

Scott Benner 2:31
Okay. Do you mind me asking how old?

Kristen 2:34
I am. 25.

Scott Benner 2:36
Okay, so you guys met each other in kindergarten or something like that?

Unknown Speaker 2:40
Basically.

Unknown Speaker 2:43
That's so nice. Did you date in high school?

Kristen 2:46
Um, well, I was in high school. It was not in high school.

Scott Benner 2:50
I Oh, now I see what you're saying. Jay. Jay has robbed the cradle. Where was he? arcade at the mall when

Kristen 2:58
he was actually my brother's hockey coach. And his younger brother is the same age as my younger brother. And they introduced us.

Scott Benner 3:08
No kidding. Oh, Christine is a bit of a may December thing is J significantly older than Kristen. No,

Kristen 3:15
he's about two and a half years older than me. Gotcha. Okay.

Unknown Speaker 3:19
Yeah.

Scott Benner 3:20
We all have the picture. We see what's happening. Okay.

Unknown Speaker 3:23
Yes.

Scott Benner 3:24
Were you planning on getting married when he was diagnosed? Or was that not in the workshop? Yeah, we

Kristen 3:30
were engaged that December, December 2016. And then he got diagnosed in September.

Scott Benner 3:39
Is it possible that the fear of getting married gave your husband type one diabetes? Yes or no? Maybe

Unknown Speaker 3:46
could have been

Scott Benner 3:48
shocked this system? Yeah. Blood Cells jump up and was like, we have to stop this. And then they just stopped this pancreas instead. That's fantastic. Well, well, anyway. I'm sorry to hear about his diagnosis. But it's it's interesting that you're on the show and not him because you reached out to me. Yeah. And so we're going to kind of find out about your experience, I guess, being the, you know, being the wife and I guess even the, the be truth of a person with type one. So let's go back to when he's diagnosed first. Yeah. I imagine shocking. Were you? Were you a part of the process? Or did he do it on his own?

Kristen 4:28
I was Yeah, I was a part of the process. Jay, how had an insane fear of needles. I mean, he he had the flu shot as a kid and he passed out knocked his front teeth out. So he's, he was absolutely terrified of needles. And I think once he realized what was happening. He did everything in his power not to go to the doctor.

Scott Benner 4:58
No kidding. Do you you think do you think let me ask you a question do you think when he knocked out his two front teeth that's when he decided to play hockey because he just figured why not right like have nothing to lose

Kristen 5:10
right i would say yes but he probably started playing hockey at about three years old and that happened and he was

Scott Benner 5:17
i don't know he was lucky to have his teeth that long man nevermind

Unknown Speaker 5:20
yeah true

Scott Benner 5:21
yeah you think he kind of diagnosed himself and then when he really oh yeah it was going on he just didn't go to the doctor but was his plan do you think

Unknown Speaker 5:31
i don't

Kristen 5:32
know exactly i don't know if either of us really understood what diabetes really was or what type one diabetes was jay like had all of the symptoms he was drinking excessive amounts of water and losing weight but we boiled it down to we moved home from a different city and jay had different work schedule he started having different eating habits we're like this is great you're losing weight and you're drinking lots of water this is wonderful but when it got past a certain point i was starting to get confused and i'm trying to compete with how much water he was drinking i was baffled there was no way i could drink that much water

Scott Benner 6:24
well you know what they say work schedule changes you get thirsty right away so it's january genuinely amusing when you take the diabetes out of it how how many people because that we almost all do it start looking for just any other reason that it might be that really is something because because i guess it feels like if you don't know it's not real but yeah you know the longer you don't know the longer you're hurting yourself it is really like you know it's a lot like when we talk about blood sugar's here and people were like well my doctor said 180 was okay yeah and i didn't know and i always think like did you not look like you could have like the internet exists you could have just said hey what's an average blood sugar person doesn't have diabetes and then when it came back and told you like 85 you could have went huh yeah this isn't good this isn't right it but instead we go with what the doctor said or nobody tells me it's not real it's interesting it's understandable but it's interesting

Unknown Speaker 7:25
for sure

Scott Benner 7:26
so he so he heads off to the doctor with his with his extreme needle phobia from his flu situation by the way my son cole was about 11 i got him a flu shot and just out of the corner of my eye i saw him i think he was gonna punch the nurse reached out and grabbed his hands like we're doing and he's like i don't want this and i was like well you can't hit this woman because you don't want it like that's not how this works yeah did your husband come close to punching anyone at hospital

Kristen 7:52
um no no i know passing out but definitely had to you know go through routine when the needle was coming and need to cold cloth over my face it was all thing but

Scott Benner 8:09
it was just here as a christian at this moment grown man scared of needles covered his face so you're standing there thinking i could probably do better than this right is that what was

Unknown Speaker 8:19
like i know i'm

Scott Benner 8:21
trying a little harder to find the guy who's not afraid of this

Kristen 8:24
well i think we're both pretty bad i'm just as bad like fainter got to get the room with the bed when you go get your blood taken

Unknown Speaker 8:35
yeah it's just bad

Scott Benner 8:37
i hear you so that's interesting though because you're both in that situation so when when the first time you're in the room together and he's holding a pen or a needle or something like that or do you think you were both thinking like well who's gonna do this because it's not going to be me

Kristen 8:50
yeah it was it was pretty awful yeah

Scott Benner 8:54
tell me what happened was it like a three stooges comedy or

Kristen 8:59
it's a it's all kind of a blur i think the nurses had to do it initially he wanted to in the leg for the longest time and now he obviously had to move sites around and so making the back of the arm and i remember he had me he's like okay well you can try just one and i did it in the leg but i think i it was as if i was trying to stab him with

Unknown Speaker 9:23
the insulin

Scott Benner 9:25
like a horror movie were you jabbing yeah

Kristen 9:27
no no i'm purpose ended up being what i did

Scott Benner 9:31
i wouldn't imagine so there was cursing then or do you guys not curse what did i

Kristen 9:35
oh yeah we curse yeah he said that i would never be allowed to do it again but that changed a

Scott Benner 9:45
little does he know that you're gonna spend the most of the rest of your lives together and you're going to you're going to do far worse to him than to each other to be perfectly honest so you guys are close to your wedding date he's been dying he's been diagnosed with type one You're starting to understand that it's a lifelong disease, and you're getting the idea of what diabetes is.

Unknown Speaker 10:05
Yep. You

Scott Benner 10:06
said he lost weight. Did he lose a lot of weight? Like prior to the diagnosis? Like, was it a couple pounds or 20 pounds? or How was it?

Unknown Speaker 10:15
It was a lot of weight.

Kristen 10:17
The doctors have boiled down to Jay being able to wait so long from diagnosis because he burned through a lot of weight. By the time Jay had hit the hospital, he had lost over 200 pounds.

Scott Benner 10:33
Oh my God, that's amazing. So yeah, my gosh, so I'm wrapping my head. I just got I just, I don't know what happened. I just like fried a circuit for how long? How long was the weight loss? In like time months.

Unknown Speaker 10:51
In months,

Unknown Speaker 10:52
it was

Unknown Speaker 10:54
probably three or four years.

Unknown Speaker 10:57
Oh, no kidding.

Unknown Speaker 10:58
It was a long time.

Scott Benner 11:00
Was he willfully trying to lose weight? Or was he just like, Hey, this is things are finally going my way. Like, which which way was it?

Kristen 11:08
It was unsure. I mean, his job switched to like a night shift to a day shift and walking. Like miles and miles and miles per day. So

Scott Benner 11:22
part of him just thought my life's like my lifestyle. My lifestyle is changing. And I'm good. Yeah. And it's working for me.

Kristen 11:28
Yeah. But obviously once it reached like a certain certain weight he had lost there was obviously an issue.

Scott Benner 11:35
Yeah, I was just reading something the other day. That said, I think the number they put in the article was 20 pounds. Like if you lose 20 pounds, and you weren't, you weren't trying to lose 20 pounds, you have to go you have need to go to the doctor. But but so something about him having that weight to lose. Yeah, help them The doctor said Do you have any, like clarification on that? Because that sounds?

Kristen 11:57
Yeah, it was because he had more weight to burn through is

Scott Benner 12:06
so he kind of sustained him for a while while he was going Yes.

Kristen 12:10
That's kind of what they they've said or, or that is Pinker's was slowly slowly shutting down over the years, or else he would have been in the hospital sooner.

Unknown Speaker 12:19
Yeah. Okay.

Kristen 12:21
I don't exactly know when it started or when that that weight loss was actually him trying. Right.

Scott Benner 12:27
That's so yeah, it's hard to know, I guess.

Kristen 12:30
Yeah. And without knowing anything about it, now I look back. And obviously, things would have been done differently for

Scott Benner 12:38
now. You can't hindsight 2020 you can't you can't fault yourself for that. So it's been a year and a half or so. It has the weight stayed off of him. Um, well, when he got to the hospital.

Kristen 12:52
Jay was so so skinny. He needed? Oh, yeah. When he was on he was in the hospital for almost three weeks. And he gained I think 30 pounds in three weeks.

Scott Benner 13:06
Wow. That's crazy. I mean, it's not that crazy, honestly, aren't in game almost Arden gave him was three pounds overnight when she started getting insulin.

Kristen 13:12
Yeah, yeah. And the color came back to his face and the weight came back on you can see his ribs or his bones anymore. And to put into perspective, J is normally probably two to 25. And he's six foot two like he's a he's a grown man.

Scott Benner 13:32
He's a big guy. Right? So yeah. It's it's even more startling when you see somebody who you expect to be sort of big and sturdy to Yeah, get frail. have happened to a friend of mine when I was young, and his father cancer and his dad was like, six, four. And I just always remember him being this massive person. And then, you know, a few weeks before he passed away. It was just like, it hit me one day. I was like, Oh my God, look, it feels like he shrunk. You know, yeah, really something. So you guys get over the shock. And he I'm assuming this he get over his needle phobia? Or how does he end up getting his insulin?

Kristen 14:04
He got over the needle phobia. It did take a while there was a long time where I would be I'd have to tell him that I'm thinking about making supper. So you should start getting the needle ready. Because it would take 45 minutes to an hour for him to even give himself one needle. But I mean, it's not even an issue anymore. He's any is on the Omnipod now, so he doesn't even have to deal with that anymore.

Scott Benner 14:35
That's very nice back then was it sort of like trying to coax a child into swallowing like a pill or something like that? You

Unknown Speaker 14:41
know? Yeah, maybe.

Scott Benner 14:43
Were you ever like there'll be like happy time with Kristen tonight? If you could just go Did you ever just like get yours? So it seriously for second? Was it ever? I don't I don't know if irritating is the right word but from a distance. Did you ever look at him and think oh my mom like I just put the let's Go man, like, like, Did it ever affect you that way? Cuz because here's why I ask when you love someone who has type one, you your concern for them in a way that's not always transferable like you, they don't always want you to tell them. Yeah, you know, I'm concerned for you, I'm worried for you, I really want you to Pre-Bolus or something like that. Like, it's hard. Like, you don't know what to say sometimes what not to say. So sometimes you bottle the stuff up. Did you ever have a feeling where you were like, Oh, my God, this guy is just like not? Like, what's he doing? Or did he get over it pretty quickly?

Kristen 15:33
Uh, no, I tend not to bottle things up. I just say what's on my mind. with J. With getting over that needle phobia, we started this technique. And it was like, if you don't do it on the countdown to five, you're not going to do it. So he won't even start 54321. And in the needle went and it seemed to help. And

Scott Benner 16:00
just giving them a timeline.

Kristen 16:02
Yeah. And then he would do some and I would do some and we just kind of went back and forth, they would help to give them a little bit of a break. And that seems so long ago that I don't think it lasted too too long after he was diagnosed there. There was a bigger issues that came along after he was diagnosed that kind of made that a small deal.

Scott Benner 16:27
What were the bigger issues.

Kristen 16:29
So he started, what they called it at the diabetic clinic was hungry nerve syndrome. So they had never seen it before. And I guess because his blood sugar's dropped so quickly, and they must have been high for so long. his nerves, I guess they say like they're at the, at the top of your skin. So it was just an excruciating pain. And that lasted for, I would say three months, I had to take a leave of absence from work and be at home every day with him. But luckily, that has all subsided. He's still taking medication for it, but he is in a whole different life compared to

Scott Benner 17:27
that. So it did be did just didn't I guess stop at some point. But how long did it take to stop? And what's the pain all over his body?

Kristen 17:35
Yeah, so how he described it as as if he had second degree burns all over his body. He he felt like his his his chest, you couldn't touch him lightly, because it just felt like it felt really bad. I don't really want to use what he exactly said. Because I know there's children and exactly, it hurt a lot. And he couldn't wear particular clothing. He had to buy like a particular sheet and blanket and an t shirt.

Scott Benner 18:15
Listen, I'm all for helpful until it starts costing money. And then you should have told him look stand naked in the center of the room. You're not buying sheets. How long did it take for to pass?

Kristen 18:30
About three months? Until it subsided? And then now? Yeah, it was pretty awful. He I I never want anyone else to experience that. Or watch someone go through that. And what what are the doctors call it hungry nerves and drum. They said that because his blood sugar like when he was diagnosed, his blood sugar was 600 which listen to other people's interviews, it seems like that's relatively normal at diagnosis. is a once he was 14. And within three months, when we went to the doctor, his agency went from a 14 to a seven. So they think in dropping that. That's their best

Scott Benner 19:21
kind of confused is.

Unknown Speaker 19:23
Yeah.

Scott Benner 19:24
You know, it's funny, I was just speaking with someone the other day who was told by their doctor that their child was in experiencing like an incredible hunger that comes sometimes from getting your blood sugar stable and that it should Oh, and I just had never even heard that before. So Oh, yes. Another one for me that.

Unknown Speaker 19:42
Yeah,

Kristen 19:42
that's really it's a lot of the doctors are quite baffled because these issues don't normally come until like 20 years down the road. And there's no way Jay could have had diabetes for 20 years.

Scott Benner 19:56
So so when they hear nerve when they hear nerves in general or problems with nerves they think that that's from long term problems but in his situation it probably it's probably not from that it's probably just something else and it has never like reoccurred or anything like that no would you do with all the sheets and the clothes

Unknown Speaker 20:17
he still wears them

Scott Benner 20:19
i don't like waste crystals

Unknown Speaker 20:22
i mean

Kristen 20:24
the pain is still there but it has subsided to an extent where he can live a normal life

Scott Benner 20:31
that could just be the marriage you don't know feeling that constantly because i have i feel like i'm buzzing a lot of the days i'm glad that it's something that he can work with and it doesn't affect his day to day in the same way do you think he feels do you think he feels it but he doesn't experience it the same way anymore like he's accustomed to it or it just has lessened

Kristen 20:53
yeah that could very much be it he's um he's a tough guy he played hockey for years he played hockey with broken limbs and broken ribs broken wrist and

Unknown Speaker 21:11
sounds so bad to him i guess

Kristen 21:13
right i guess i

Scott Benner 21:15
so you're in you're in canada

Unknown Speaker 21:17
yes i am

Scott Benner 21:18
but you're not canadian are you i am are you really you don't sound good to me i just said that from your voice so where we're in canada are you from

Kristen 21:27
i'm in alberta so like above montana idaho

Scott Benner 21:33
help me for a second why am i why am i confusing your accent with european

Unknown Speaker 21:42
um i don't i don't know i don't

Unknown Speaker 21:45
know i'm an idiot okay

Kristen 21:47
well my like j is from newfoundland which is east coast of canada maybe i'm picking up some of their accents it's

Unknown Speaker 21:55
like i don't know

Scott Benner 21:56
i'm telling you for a second i thought jay got himself like a russian mailer and had it shipped to canada which is a warm up i guess if you're leaving you know russia but for most other people no one's looking to go above montana like imagine imagine everyone who's in montana right now there's somewhere north of you oh horrible so cold

Unknown Speaker 22:18
oh yeah so cool

Scott Benner 22:21
so you said in your note your this is very interesting because do you guys both listen to the show or is it just you

Unknown Speaker 22:27
it's just me

Unknown Speaker 22:29
what made you reach out

Kristen 22:31
um i think after the pain subsided and we were working really hard on the diabetes i was like this isn't right like we're not achieving the numbers of the correct like there's got to be a better way to do this and i just started searching and i i like podcasts and i googled type one diabetes and this was one of the first ones that came up

Scott Benner 23:04
so my quality seo is the reason you found the podcast like if another one would have popped up ahead of it do you think you'd be on a different podcast right now

Kristen 23:11
well i listened to a couple other ones but they just weren't as good

Scott Benner 23:16
i got bless you i it's wrong for me to say it but this is totally the best diabetes podcast

Unknown Speaker 23:23
it's true it's so true

Scott Benner 23:25
thank you your check is in the mouth i appreciate you so i've just brought up my conversion chart so that we can talk about type one in a way that'll be helpful so when you found yourself online googling for a podcast and found the best one on the internet i'm so sorry there there are people who don't hear sarcasm correctly and so sometimes i have to cover myself attempt just joking i'm not joking i think it's the best one so in this moment it wasn't sarcasm it was you'll pick up the sarcasm okay so when when you were like no we have to figure something out where was his average blood sugar sitting

Kristen 24:03
well he would go to bed pretty good about i actually have my conversion rate up to so i can say both for the canadians and americans so he would go to bed monday this was long time ago he go to bed at about a nine like a 160 and he was waking up out of 15 which is about a 270 and i'm like what is happening i have to figure this out and at that point we were just poking we got the libra which was okay it's not that not that great and then once we got that Dexcom we saw that he had the dawn effect and right around 3am his blood sugar was just going through the roof um but he was not achieving between that 70 to 140 range, which is a four to eight, nine. In my language. He was, I don't know, lots of to hundreds, three hundreds. It took a long, long time to get his blood sugar down from those numbers. Okay.

Scott Benner 25:16
And so was this when he was on? injections is still?

Kristen 25:21
Yep, he actually just switched to an omni pod in February. It has not been that long. Okay.

Scott Benner 25:27
Okay. Yeah. So you found the best podcast and you found the best insulin pump?

Kristen 25:31
Exactly. When I found the podcast, he was using the Libra. And I think it took me like two days of whistling to come home and say, okay, you're changing to the Dexcom. And well, as everyone knows, any change with any of the equipment is is a learning curve. And it's a big deal. And he was very resistant, then.

Scott Benner 25:53
Luckily, he had you to force him into it.

Unknown Speaker 25:56
Yeah, exactly.

Scott Benner 25:57
Let me say for a second, I joke constantly about being married, and my wife, and I'm sure if she ever listened to this, she'd probably just put a pillow over my face bombs. Yeah, but most of I'm being serious for a second. Most of the advancements I've made personally in my life, are because of my wife's intolerance of the jackass that I was when she met me. So if I, there are so many things about myself that are better now. Because because my wife said, This isn't good enough. We should be trying harder. Yeah. And I appreciate I don't know if that's just because she doesn't want to do the laundry. Maybe she's like, Look, you need to stay alive. I don't want to fold clothes. Maybe it's that maybe it's that's possible. Maybe she loves me. I can't tell it's hard to tell. But but but anyway, but seriously, sometimes you just need someone who has your best interests at heart who's willing to over to ignore your bullheadedness about something so that's really it's really nice of you because it's not easy. No and and I'm still haven't spoken about my friend Mike in any kind of real context on the show, and maybe I will one day but but Mike passed away a couple of weeks ago. And and I think he he could have used somebody like you to, to push them a little more. And he was very stubborn about his type on his whole his whole life. And I tried as hard as I could and wasn't really in the in the position and I know his wife tried but he needed somebody to to grab him by the maybe by the neck and tell him Look, let's just try this because I love you and let's try you know. Anyway, I'll find the courage to talk about Mike one day.

Unknown Speaker 27:41
Yeah,

Unknown Speaker 27:42
I'm sorry to hear that. Thank

Scott Benner 27:43
you very much. Geez, now I'm just like, he was just who's my best friend that I and I wanted to say that but I was afraid it's gonna make me cry. So I tried to move on to another thought. But now now I'm stuck for a second. I'll tell you what we'll put we'll put an ad here.

Kristen 28:00
Okay, that's okay.

Scott Benner 28:02
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You bring your husband this technology and you're like, Look, I'm listening to this podcast. And we're, you know, there's, there's more here for us like the we will find better tolerances. Was he resistant? Was he thoughtful about it? Did he push you aside?

Kristen 31:00
Yeah. We're both extremely stubborn and bullheaded. So we butt heads a little bit. And it's a hard balance, because I'm trying to boss him around, but be his wife. I don't know, I guess it's kind of my job. But

Scott Benner 31:20
I think your job is just to tell him he's wrong. He's underperforming, and he's not getting to have sex. I think those are really the things you're supposed to do. But what are you doing?

Unknown Speaker 31:31
Um,

Kristen 31:33
yeah, it just, I will come home. So excited every day and say something new that I learned on the Juicebox Podcast that he had to try. And we try it that night, and it would work and everything just started to work. And it started to click. And I i another reason that I use a podcast is because diabetes is so lonely and isolating. And I feel that and it can take over you a few but it but by using that Juicebox Podcast is like a community. And let me get over that. And, and also, let me help Jay in understanding like that I don't want him to ever feel super alone or super isolated, that I'm always I'm always here. And I like I have the knowledge and I understand. I don't understand what it's like to have type one. But I understand a lot about it and

Scott Benner 32:36
a lot of aspects about I feel the same way I there are times when I feel odd that you know that I'm the one who's talking about it when I don't have it. But yeah, but my my perspective of it is is no less, you know, important. I don't think I just I don't know what it's actually like to be the person. Right? What what kind of isolation? Can you describe the isolation? Are you able to put it into words? What happened when he was diagnosed?

Kristen 33:01
Yeah, um, well, we were on our own, we bought a house, like, five, six years ago now, like we were living our own life, we had our careers. And this happened and our whole world kind of came crashing down. Everything that we knew, changed. Jay, worked in a job where he was out in a field in the middle of nowhere. And in minus 40 plus 40. He can't do that anymore. That's too dangerous. There's just no cell service. There's

Unknown Speaker 33:44
it's just,

Scott Benner 33:46
you got you. You were worried about him? Was he worried about it? Or were you worried about it?

Kristen 33:51
I'm both really worried about it. I'm like, in remote areas where no one can reach you. So he hasn't been working since he'd got diagnosed, but we are at a point now where he will be going back but that was definitely hard. And then there was us learning about it, but us learning about it as at a very fast pace. And it's our everyday but everyone around us, all they know is just the very, very, very basic stuff. So it's not our support system was our family. But at the same time, they didn't have a clue what we were talking about.

Scott Benner 34:38
Right. So they're just nodding at you and yeah, looking a little sad for you. And yeah, saying things like, I understand. And that was difficult.

Kristen 34:50
Yeah, it was a lot of like, you're so strong and well, I don't think we have a choice here but but I understand like When something like this happens, you can be strong or you can not be strong. So I don't I'm trying to accept that as a compliment other than getting angry.

Scott Benner 35:10
I think that I understand what you're saying about not wanting to begin to get angry when people say things that don't quite fit what's actually happening, but you just had a break. They don't really know. Yeah, you know, and they are trying to be helpful. It just, it doesn't work out, usually. And I've listened. I've said it before. And I've taken flack over it in the past, because parents like to talk about how brave their kids are all the time. And I just think like, I mean, she I mean, it's brave, but they don't want to that's not like they saw it, they want to do it. Do you don't mean like brave, brave is brave is enlisting in the military when you don't have to write. Brave, right, if you you know, it's it's still brave if you if you get drafted, I guess. But the pinnacle of bravery is saying, There's no reason for me to be in this fight. But I'm going to get into it anyway, for reasons you get diagnosed with Type One Diabetes, it's not like you raise your hand and go, I'll take diabetes to someone else doesn't happen if you did that. That would be brave. What's you know, what's happening to you is strength. Its its resilience, like you are being hit with something hard, and you're and you're resilient. And that's amazingly, it's incredible. And it's not something that happens for everybody. That's why it's so remarkable when you see it, because we know some people are hit with the same thing that happened your husband and it crushes them. Yeah, right. And but you don't know why it crushed them. Maybe they didn't have the support system they needed or the understanding or the tools or the technology or the medication, or the insurance or all the possibilities, and how frequently, there's something happened with diabetes, that is absolutely like buries you in an avalanche. And you feel like you can't get out of it. And you go to your doctor and ask and they're just like, I don't know, like, we won't move this setting and see what happens. And it doesn't do anything. Yeah. Right. So And not only that, you're basically on Mars, because you live in Canada. So you're by yourself. I mean, I mean, when you picture when you said you bought a house I just pictured Santa is like castle, like just snow everywhere with a house right in the middle that you look at and think how do they get electricity? That thing?

Unknown Speaker 37:13
Exactly right, exactly.

Unknown Speaker 37:15
Am I really?

Unknown Speaker 37:17
It's a two storey igloo.

Scott Benner 37:21
Congratulations, a two storey igloo is absolutely going to be the title of this episode. Well done. Well done. That's spectacular. You were really honest, just now about how it felt? And it's Yeah, it's not good now. Do you think? I don't want to? I'm trying to figure out what to do. Do you think that not finding? Forget this podcast? Let's say you found let's say you just found nothing? Do you have a feeling for where you'd be right now?

Kristen 37:57
I'm probably not in a great place. The diabetic center here is probably as helpful as everybody else's few few examples. I mean, we have found a very good nurse practitioner at at the center. But this only happened when Jay got put on the Omnipod. But the information that they give is just so bad. I remember asking, when should we give the insulin before after the meal is like I'm confused. I don't understand what I'm supposed to be doing here. Or what Jay is supposed to be doing here and and they just do look at each other and kind of shrug their shoulders and go whenever you want. Really I'm like what? And now listening.

Scott Benner 38:47
It's the same good. Same thing I do with when I shave my cat today. No, not today. Doesn't work with insulin. It almost doesn't work with my facial hair. But I'm a stay at home dad. So I shave when I want to. It's like really one of the great perks of my job is that I don't have to shave every day. And by the way, I figured that out years ago, in the in the winter, I realized that the moms that I was mostly around with my kids when they were younger were wearing like sweat pants and weren't shaving their legs. And I thought

Unknown Speaker 39:18
I could do it. I

Scott Benner 39:20
thought if they don't have to shave their legs every day. There's no way I have to shave my face every day. Like we're all we're all in this fight together. So now I've become the laziest shaver ever. But that's amazing. So it didn't really matter when to give your insert it could have been before during after they gave you no guidance on that whatsoever.

Kristen 39:37
Apparently, apparently, yeah. And then they would be baffled why his blood sugar was at the 12 or 200.

Scott Benner 39:43
And so you were met with no answers like what would you be told? What would you be told in the beginning when you can you went in you're like look, we see 200 blood sugars all the time. What What should we do? Hmm.

Kristen 39:58
A lot of it was it's better to be high low this is this is better than being low isn't it i'm like okay we we have already been faced with what happens when you have high blood sugars no it's this is not the great the better alternative here i don't

Scott Benner 40:19
that's not an answer either

Kristen 40:21
no it's not and it makes me so angry and i remember there's some nurse practitioners who like my involvement and praise me and i know that drives me crazy because they'll ask his opinion and then they'd be like okay but let's talk to kristen because she has the good questions and it makes him so okay just

Scott Benner 40:42
sit there quietly while mommy figures this out you're gonna have to be careful there by the way you don't want that to turn into a situation where you are mommy you know you're not looking for that especially up in the cold so well do you guys so this had popped into my head earlier i didn't ask but now you brought it up so i'm gonna ask is there a way is it possible is i guess is my question is it possible that you're going to start helping him so much and do such a good job that he could get complacent and allow you to do it and not be as involved in it like is it because that's something parents think about a lot yeah but it sounds like that in the situation it could be similar and i'm not trying to get you divorced and careful how you answer but but it's an interesting conversation right like is it possible that you know i can put it into my own terms right i didn't get i didn't yesterday was a mess at my house at the timing of everything got messed up everything got pushed back and i did not get dinner made and when my wife came home she was she'd had a long day she was like in meetings constantly she had a headache she was tired she was gonna go out and exercise and i know she wanted to walk in the door and eat and there was no food there and she was irritated like to the point where like everyone started making fun of her behind her back like she was really upset and she got over it don't get me wrong but like there was an expectation there she was like i'm out i'm home and someone's gonna feed me and when it didn't happen she was like hey why is this not happening i wonder if your husband's has an expectation of like you'll take care of his blood sugar um

Kristen 42:21
i understand like why you might think that but no j is so on top of it he as like i am very involved in it is like a team effort but g goes on his own places that i'm not there and i'm just he has

Scott Benner 42:43
the same successes away without me from you that he does with you yeah it's just that you understand so you're you're more of like the conduit for the information yeah i listened to the podcast and then you come home and tell him the parts he needs to know

Kristen 42:59
yeah and he tries it or he'll say this is my blood sugar this is what i'm doing this is what i'm eating i'm thinking this what are you thinking

Unknown Speaker 43:07
gotcha

Kristen 43:08
and then we go off of that

Scott Benner 43:10
sounding board just he's yeah and let's let's brag for a second who's right more frequently you

Kristen 43:16
were i'm not going to answer that

Scott Benner 43:20
question everybody she's always right she's never been wrong once and save matt

Unknown Speaker 43:23
oh god

Scott Benner 43:26
listen if either of you knew what you were doing you'd move out of canada i'm just saying it's cold

Kristen 43:30
and it is very cool any sense to live there but it doesn't really doesn't it snowed here to two weeks ago

Unknown Speaker 43:39
in may

Kristen 43:40
yes yeah i like a lot of snow

Scott Benner 43:44
i'm sorry yeah is it is when it starts snowing do you just feel like oh my god i give up

Unknown Speaker 43:52
just cry just

Scott Benner 43:55
the snow snowing i know people on facebook from other places that flowers in their front yards and so nice and i hear all right well listen you have things you have that we don't have don't don't act like you have we don't have it it's fair's fair you have to freeze but you get alright i'm at a loss for what you get you get i'm sure there's something i think people in cold weather live longer

Unknown Speaker 44:22
i don't know

Scott Benner 44:24
not even true i freeze to death i may have learned that on a television show when i was 15 so it's possible that the people on the atm live longer because that's it

Kristen 44:35
i mean it gets like our average temperature in the winter time i don't know fahrenheit it's like minus minus 20 to minus 40 it's pretty normal for the wintertime it's freezing

Scott Benner 44:52
i just the other day i've been telling my wife recently we need to we need to retire somewhere i have very specific ideas i want it to be warm but not hot and not humid and i don't want weird bugs and and every time i say that people like say you're going to san diego i'm like i cannot afford san diego there's not another place and someone told me maybe northern texas but then i guess you get a little weird with like the bad like the you know the wind and the rain that like picks your house up and makes you see you know the wizard of oz so i don't know there's no good place the i think the key to life is to make enough money to live in warm weather places in the winter and cold weather places in the summer i'd like to probably angry yeah but i don't know how i'm gonna do that so i mean i guess i could call on the pod and like you know up my ad rate by 9,000% and that might help me but other than that i don't know what's gonna happen so okay so you switch so he's got dex now Dexcom g six or do you guys can't get you six in canada

Kristen 45:54
we cannot get the g six until maybe october or november

Scott Benner 45:59
do you have the five i have the five yeah still a fantastic meme sensor really really great so you have the g five and you Omnipod yeah did you get the new dash with the on the pod

Kristen 46:12
i don't know if that's out yet here either i tried to look that up and i cannot find this

Scott Benner 46:20
again you guys and being serious for a second having done the blog for so long the podcast canada has always last like they always it takes a long time for stuff to get there okay so but he's but he's pumping and how has that changed things for him it's biggest improvement you've seen i guess

Unknown Speaker 46:40
hmm um

Kristen 46:43
there's so many to lists i don't know if i can list all of them

Scott Benner 46:47
stream of consciousness then

Kristen 46:49
starters has a one c on friday we just went to his endocrinologist was 5.9 his a one c when he got diagnosed was 14 and since then have been between six seven and seven five on injections and then yeah with the pump 5.9 was the last one and just everything so having control of the basil rates is amazing

Unknown Speaker 47:23
it's the whole thing

Kristen 47:25
it's the whole thing the thing about living in alberta the thing is if you don't like the weather just wait a second because it could be 20 degrees which i think is like at one day and then the next day or during that day it could start snowing and drop to zero so the weather extremely affects jays basil rates so being able to have control of them is awesome in the winter time jays basil is 30% higher than the summertime

Scott Benner 48:03
juice

Unknown Speaker 48:03
it's yeah i've crazy

Scott Benner 48:06
a lot by the way that changing the seasons change their basil needs yeah and so are you saying colder needs more insulin

Kristen 48:14
yes and in the wintertime he also can't get out and golf every single second that he can whereas in the summertime is activity

Unknown Speaker 48:24
yeah

Scott Benner 48:25
yeah and when he has less activity he needs more Basal

Unknown Speaker 48:28
yeah for sure

Scott Benner 48:29
okay so you're a golf widow

Kristen 48:33
well he golf i drive the car

Unknown Speaker 48:36
you come along

Kristen 48:38
sometimes sometimes

Scott Benner 48:39
you guys thinking about having kids or no

Kristen 48:42
um yeah but i don't know how long until this podcast will go up it seems like three three to six months is kind of fair to say

Scott Benner 48:52
it's usually the that's usually how it goes we'll we'll there'll be a little baby by them

Kristen 48:57
well i'm hoping that's actually why i had to reschedule the podcast is that we're trying but we need a little help from from science

Scott Benner 49:06
so what you were gonna say you had to reschedule the podcast so you could have sex

Kristen 49:12
i guess that's kind of how it sounded but no

Scott Benner 49:14
we were trying i was like i can't do the podcast today we're making we're making

Unknown Speaker 49:19
sorry

Scott Benner 49:20
no no no please don't be sorry okay so yeah you did have to reschedule a recording this later than we were going to say you had like come you were going having conversations about ivf

Unknown Speaker 49:30
yes that's right

Scott Benner 49:33
i injections and everything are you underway are you still in the planning stages

Kristen 49:36
we are doing the testing at the moment and then in july we go and we decide what option we want to do

Scott Benner 49:47
hmm yeah no kidding yeah do you think you're gonna do you have any ideas

Kristen 49:52
um well there's two options there's a ui or there's ivf and whatever They kind of recommend to us as what we will, will do, I think. Okay.

Scott Benner 50:05
And yeah, and then it's you use the medications and then you go do what you're supposed to do and that makes is that right like that you we're not we're not talking about implanting things yet or are we talking about that?

Kristen 50:17
Yes, we are. IVF is like the implantation of the, the Blastoise light, which is the embryo one, day five, and I don't know too much about it, but I know pretty basic.

Scott Benner 50:29
Sounds like you're gonna know a lot about it. Yep,

Unknown Speaker 50:32
that's, that's true.

Scott Benner 50:34
There's a podcast about about IVF that you should try that I really I've heard a lot of good things about. It's called Matt and Dorries. Excellent Adventure. And excellent is eg GC LL. e. NT.

Kristen 50:47
I have actually listened to that. Oh, you know, that is awesome. How do I know? Yes, I

Scott Benner 50:52
know things about everything. Last night, I said something I said because you think you know everything. I was like, I don't think I know everything. But I mean, I'm right about this. You have tried that? You know, Matt's a television writer. Yeah. And his wife, I think is a journalist. Yeah, she

Kristen 51:08
works for BuzzFeed, I think which is like those elbows. videos you see on Facebook Like, DIY is I think

Scott Benner 51:16
BuzzFeed ruined blogging. Because nobody wants to read they're like, I just want to click through see some pictures video DiCaprio. watch a video at the end. Find out why that worms crawling out of that girl's cheek and then I'm back. But anyway, I've heard really good things about that podcast. So you've already listened to it all the way through. Okay.

Unknown Speaker 51:35
Yeah. It's awesome. Me?

Scott Benner 51:36
Yes. For the rest of you. I don't mind if you listen to other podcasts that aren't diabetes, as long as they don't get in front of mine in your listening list. And you definitely shouldn't listen to other diabetes podcast because I mean,

Unknown Speaker 51:47
it's true. What's the nice?

Scott Benner 51:50
Kristen just told you this is the best one. And believe me, she's from Canada. They don't lie about anything.

Unknown Speaker 51:55
No, we don't.

Scott Benner 51:57
And when she lie about not lying, probably not. Okay, well, I want to wish you luck. I hope it goes well. And that, you know, are you hoping for one or do you like when you start talking about IVF? Do you start thinking there could be more than one or how does that usually work? I don't know nothing about it. Besides,

Kristen 52:16
yeah. Well, their their goal is to only have one because there's a lot of risks with having multiples. But I mean, I'm still hoping for twins. I would love to have Yeah, one and done.

Scott Benner 52:29
Plus you're probably so lonely up there in the tundra. Then you're right yeah one to go gather like moose pelts. Yeah. And the other one could get firewood. You probably live in a sprawling metropolis. I I've just or maybe you don't. How is Alberta? Is it are you in the woods? Are you like, is it I? It's so much fun that I don't know anything.

Kristen 52:59
There's there's about in the city I live there's like 100 over 100,000 people are not a huge city, but we are right between place called Calgary and Edmonton. And they're, they're quite huge. Yeah. Yeah. Okay. The Oilers and the flames.

Unknown Speaker 53:16
That's how I knew it. Yeah.

Unknown Speaker 53:21
Yeah, and then. Yeah, no, all right.

Scott Benner 53:24
So Fine. You don't live in a tree or something like that? No, no, no. How would a tree even grow in that call, but I know nothing about how trees work. We

Kristen 53:32
have like evergreen trees. Lots of Christmas trees.

Scott Benner 53:35
We're lucky I understand this diabetes thing because if this podcast was about almost anything else, it would just be a lot of quiet. you going? I don't know how that works. That sounds horrible to me. This is the one thing I understand. Okay, so, uh, I mean, I like it. I like what you guys have got going. It's it seemed it seems healthy. It's supportive. It's obviously moving things along for him. Do you imagine there's a time where you he hits a rhythm and you guys just don't have to talk about this anymore?

Kristen 54:07
Yeah, that's that's what I'm hoping I'm hoping that it you don't have to talk about it as much or

Scott Benner 54:17
I don't want you to start having Munchausen thoughts like let's keep this diet like this blood sugar high so he needs me.

Unknown Speaker 54:23
No,

Scott Benner 54:23
I don't you don't sound like no, but but I'm saying the the other side of it is really like the goals got to be lessor diabetes conversations, you know, small, smaller part of your life. I just do what I do. I get to live my life. I don't have to think about diabetes as much. Absolutely. And that frees up time for you to to to raise little, your little Norse gods that you're gonna have. Right? Yeah. Because seriously, like, I listen, I can speak from from real experience. So there's been times when my whole day was about diabetes. Yeah, and I started figuring it out and it became less and less and less and now you know we talk about being bold with insulin and and then i tell people all the time like you'll find a rhythm and when you find your rhythm you're not as involved as much and i know people don't believe me that you know at first that you know a 70 to 120 blood sugar range doesn't make your Dexcom alarm constantly if you're using your insulin the right way but it's true yeah you know there's days that go by that i don't hear a Dexcom alarm ever and and that's got to be your goal and then i think after that kristen because you're right this will go up months and months after we recorded we're recording may i think that arden is going to continue on with the loop i've been using it and she's had it on for maybe four pods now so 12 days or so and i don't see why i would stop at this point you know and i'm learning a ton of stuff about the things that i talk about and how to how to make bigger you know better i guess decisions one of them i'll just i'll tell you what i'll share with you at the end i don't even have it fully formulated yet so you'll hear me months before you'll hear this with kristen i'll have sat down with i think i'm going to do another podcast with katy de simone that who's very involved in the looping world jenny smith and i are probably going to do a series about talking about how to loop so excuse me i can tell you that because you don't have a podcast about diabetes you won't rush to do it before me like some other people do when they hear me talking about social media but that's okay it doesn't matter you can do better i'm just gonna do like kristen said it's fine but seriously so one of the things we talk about all the time is like you know Temp Basal like you know i say you should up your basal rates at times when you need more you know when it's my carver like car beer like times right but when i watched this loop do things it's it's not so i you know gave arden you know her lunch Bolus when you and i were talking and almost immediately the loop increased arden's basil by like three times it was it went up to almost like six an hour yeah and then it just stayed there for like i don't know 10 minutes and then it went back down again and then it went back up and it's as she's eating i watch it push harder like you know i always give that example like put your hands together and press you know at the same rate i'm seeing it do exactly what i was trying to envision it's feeling more resistance from food and so it's pushing harder with the basil it's such a simple like idea and obviously we have it you know everyone listening has it figured out now about about the idea because we talked about it so much but to see it happen with that amount of insulin flip me out and i realized here's what i realized because of the artificial pump settings like you set your basil rate to whatever like what's your husband's basil right do you know is it

Kristen 58:11
yeah it's 1.2 1.2 an

Scott Benner 58:13
hour yeah and so when i tell you to double it to 2.4 that sounds like all the insulin in the world right it sounds like so much insulin and we only think of putting it up to 2.4 because that's how far the pump goes because the pump lets you double it to a you know 200% but with the loop there's a setting where you can say what's your maximum amount of basil you'll normally use and so when i first set it up i was like well for eight you know for basil rates like 1.4 or 1.8 i don't want it to go to all the way to like too high so i just sort of like doubled it i was like well you can go to two eight and then i realized they couldn't do what it wanted to do so yeah i pushed that thing way up to like seven i don't think it's ever used seven but there are times when it's like okay more pushing and then and then if it pushes too far it'll go down to zero it's just it's so great it's it's like watching my brain work on a screen

Kristen 59:12
wow i'm gonna have to look at look into it so

Scott Benner 59:14
insane it just it's and don't get me wrong there's things about it it is so counter intuitive in some ideas like there were times when i thought okay i have to change a setting obviously when i was getting it right in the first week or so yeah and my every instinct of what to change i was always wrong that was backwards if i thought turn that up it was turn it down if i thought turn that down it was turn it up until i really started to understand what the settings have you know control over what they're trying to accomplish and how it affects other settings and as soon as i got it all set my head i was like whoo this is pretty cool it doesn't it doesn't change what i think if you don't have

Unknown Speaker 59:53
no

Scott Benner 59:55
we can all keep doing what we're doing and i am definitely going to be able to speak Even more clearly about being bold because of what? looping but I will also say that in the future, I think that everyone who has a CGM at a pump who has access to something like this, it's going to it's at least very worth your, your time to try.

Unknown Speaker 1:00:18
Yeah, for sure.

Scott Benner 1:00:18
I'm gonna be an advocate of it going forward.

Unknown Speaker 1:00:22
Yeah, absolutely, I'd love to look at it. It's pretty cool. I'm

Scott Benner 1:00:25
looking at it right now across the room. It really did it, it, it totally cranked up her basil, then it dropped it back to nothing. And now it's got it at the normal level and her blood sugars. It's not as good as I would want it to be. But we're also on a new site right now. And I don't know how well the site works. We kind of moved around in her leg a little bit. But she's an hour, she's almost an hour passed when she gave herself the insulin, and her blood sugar is 121. And she's done eating. It's amazing thinks she's going to go down over the next 30 minutes. So you can kind of see the what it's predicting. But yeah, even that's neat. Like I'll like, I'll just at the end here, it's even cool because it shows you what it's predicting. And it's predicting, like three hours from now her blood sugar is going to be 40. Wow. But it doesn't mean her blood sugar is going to be 43 it means it's going to make adjustments between now and then to keep that from ever happening.

Kristen 1:01:22
Yeah, I've had to explain that. That very concept to so many people like, exercise makes Jay's blood sugar go down. But it doesn't mean he's gonna go low. Right? Yeah, just that so it doesn't.

Scott Benner 1:01:36
We make other decisions. Like, yes. It's like a time travel movie. It's like, it's like, somebody comes back from the future and tells you you're going to, you know, grow a unicorn horn if you go to Disneyland. Yeah. And so you just go, Well, I don't want a unicorn, so I won't go to Disneyland. And then it doesn't happen, right? Yeah. So this thing tells you Yes. Hey, you're gonna die three hours from now. But don't worry, we'll make adjustments. It'll stop that from ever being your reality. Really, really cool. So I'm sorry, like took up your time at the end of

Kristen 1:02:05
that? No, that's okay. I want to touch base quickly on what you said about increasing the basil and how you never thought about going over, like doubling it because your pump settings wouldn't let you and had to bump them out. With Jay's basil. It was very scary at the beginning. But during the nighttime when he has that domino effect and his blood sugar rises. I have or we have to triple his basil rate overnight.

Scott Benner 1:02:33
And how cool is it that you figure that out and had the man I say the loose testicles to do that?

Kristen 1:02:40
Yeah, it was a big deal. It was very scary. To do that. How

Scott Benner 1:02:45
does that sound? Hey, Jay, I'm gonna do something over here. If you don't wake up, I love you.

But seriously, how did you make the leap to do something it seemed that out of line with sanity.

Kristen 1:03:00
Um, well, it would happen night after night and I got sick of waking up, or one of us waking up one of us setting alarms at 2am 3am 4am just to look at the Dexcom to see what was happening and adjusting with with a Bolus when he was on injections. And when we got the pump I'm like, I'm just going to set up a bit like a basil program that starts running a higher basil one hour before it spikes every single night or over and over and over again. So I just started I did one 1.8 2.43 and it worked. Yeah,

Scott Benner 1:03:43
is it fair to say that you trusted that what you knew was going to happen was going to happen?

Kristen 1:03:48
Absolutely. And but then you have to think like the other things that affect Jays blood sugar that you probably haven't experienced that is like drinking alcohol. Then what do you have to do with that increased Basal rate and most times I just switch it back to the other one depending on if he had a fatty carb snack before bed.

Scott Benner 1:04:10
Yeah. And if he gets a little woozy you have to turn it down.

Kristen 1:04:14
It depends if he has like a couple drinks with supper. There isn't actually too much that I have to do. I say I mean we or him or whoever is doing it.

Scott Benner 1:04:27
I've made you feel self conscious about it now I'm sorry. You I didn't mean to I apologize.

Kristen 1:04:33
No, it's okay. Um, and but if he does have a night where he is drinking all night long with friends or we're out on holidays and we're drinking lots what they did tell us at the at the clinic compared to what we actually do at the clinic. They said when you drink alcohol don't shoot a single drop of insulin for any carb you eat. for supper any anytime you're drinking and before bed. Have a fatty carb snack like go get french fries with donald's pizza or anything like that if we decided to do that jay's blood sugar would be well in the three hundreds that's not going to happen i don't want when he drinks we just say screw diabetes today you're gonna drink

Scott Benner 1:05:22
what was the point of that did they just think because become unconscious you should say hi to be safe or they thought that yes that was what they were saying

Kristen 1:05:29
yeah i'm assuming i yeah any anything i don't i don't understand why they said that but what we actually do is when he is drinking and it's obviously different for every person but when he is drinking we shoot insulin for supper for all the snacks for all the meals so he's keeping in range and right before bedtime we go get like it's it's an excessive amount of carbs that he has to eat before bed like 120 140 carbs but fatty carbs and he has that at bedtime and i take off that increased basil for the dawn effect and he is steady the entire night and there's no lows and there's no highs and i mean it doesn't go over one 130

Scott Benner 1:06:20
yeah that's amazing and you figured that out on your own and that's really the goal is to tell people that there's a lot you're gonna have to figure out on your own so yeah you know

Kristen 1:06:30
and until you can be at a point where you don't talk about diabetes all the time you have to put in the work and you have to

Scott Benner 1:06:36
yes it's such an important idea yeah it's it's it's more work down for less work later exactly and your goal and your hope is it's more work now for almost no work later yeah and try to make this on most days kind of like transparent in a way that you just don't notice it alright christine you were fantastic it's such a good sense of humor i said so many horrible things about your life i said that i feel like you live in a new igloo i said something about moose testicles at some point i gave you i gave you a podcast recommendation for podcasts already knew about and i really thought i had they there i was like well i'm gonna say something really like great for her and she's like i've heard that i inferred that you were a russian mail order bride at one point and flowers what i'm saying have a good time

Unknown Speaker 1:07:33
i did thank you for having me

Scott Benner 1:07:35
of course we are you less nervous now than you were when we started yes didn't start well by the way everyone kristen had like technical problems that i think she was like starting to panic in the beginning and i was starting to hear a little panic in her voice but she really mellowed out and did a nice job and she had her conversion chart weather and everything yeah very nice kudos thank you so much out let me say goodbye and then hold on and i will say goodbye to you like a real person when we're not recording your voice a huge thank you to one of today's sponsors je vogue glucagon find out more about chivo hypo pan at g folk glucagon.com forward slash juice box you spell that GVOKE gl use c ag o n.com forward slash juice box thanks also to the Contour Next One blood glucose meter find out more at Contour Next one.com forward slash juice box and please allow me to apologize to kristin this episode along with a handful of others got lost in the system this was recorded a long time ago kristin i am so sorry it took this long to come out and for those of you listening who it may have felt a little disjointed timeline wise i apologize there too thank you everyone for listening for subscribing for telling someone else about the show i'll be back very soon with much more of the Juicebox Podcast

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