#1452 Three Little Birds

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Jenny, NICU nurse and mother of three, recounts her youngest son’s leukemia relapses, T1D and autoimmune challenges amid family history.

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Scott Benner 0:00
Welcome back friends to another episode of The Juicebox Podcast.

Jenny 0:13
My name is Jenny. I actually am a NICU nurse. I am a mother of three kids, happily married. I have a nine year old son, Johnny, who's my T Wendy, an 11 year old daughter and a almost 14 year old son. Please

Scott Benner 0:27
don't forget 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 or becoming bold with insulin. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juicebox, it should not take you more than about 10 minutes when you place your first order for ag one with my link, you'll get Five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. This episode of The Juicebox Podcast is sponsored by cozy Earth. Use the offer code juice box at checkout at cozy earth.com and you will save 40% off of your entire order. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about mis boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox

Jenny 2:09
My name is Jenny. I actually am a NICU nurse. I work night shift. I am a mother of three kids, happily married. I have a nine year old son, Johnny, who's my diabetes, my T, 1d, 11 year old daughter and a, almost 14 year old son,

Scott Benner 2:26
Anthony, 1411, and nine. Your youngest has type one, my youngest, yep. Okay, that's your son, yep, or us, boy, girl, boy, yep. Boy, girl, boy, and you have something going on too, or No? No, no, it was for me,

Jenny 2:39
no. But Johnny has had a very extensive prior history before diabetes. Okay, we'll get into it then, which would be part of all of this.

Scott Benner 2:47
Yeah, so let me just ask you, like, some foundational questions, do you or your husband or people in your family have other autoimmune issues? The

Jenny 2:55
only thing I know is that my mother in law has rheumatoid arthritis, and her mom had lupus, lupus and RA, okay, so, and then my dad's side of the family, I didn't grow up with my dad. I did reach out to my half sister about diabetes, and she didn't know anything about it. But I don't know if there's other type one or other autoimmune on that side,

Scott Benner 3:15
okay, but you don't have celiac or hypothyroidism, no, okay, and your other two kids, any issues?

Jenny 3:21
No, I had them both tested after he was diagnosed, and they were both negative. Okay,

Scott Benner 3:26
when does the diabetes come up? He's nine. Now. How old was he when he was diagnosed just after

Jenny 3:31
his eighth birthday? Like, yeah, about a month, a little less than a month after his eighth birthday.

Scott Benner 3:35
This has only really been a year or so, a year and a half, yeah, okay, do his other issues come prior to that? Yes,

Jenny 3:44
when he was 23 months old, he was diagnosed with leukemia. Okay, so that was a couple years of intense therapy. He had relapsed twice. So he actually had two bone marrow transplants, or aka another stem cell transplants. The first transplant, he ended up relapsing about eight months later. That transplant actually gave him a lot of side effects called graft versus host disease, where the donor is attacking your body, so he broke out like in a rash. He had a lot of GI issues. We actually had ulcers in his stomach, and he also had some changes in his lungs, so they were calling it lung GVHD. Also,

Scott Benner 4:24
how do you I, you know what? I have a lot of questions already, but I'm gonna go back to the beginning. First, you've got two kids. Your life's chucking along, fine. You have a newborn, less than two years old. How do you notice he's sick? Like, what are the first things that come up? It

Jenny 4:39
was when, like, around Christmas time of 2016 he just started to, you know, act sick, right? He having had a cough and whatnot. He wasn't in school yet, but my other kids were in school. You know, I thought he ended up having, like, the flu one day. He was kind of limping. He had some bruises on him, but I didn't think it was anything abnormal for, like, a. Two year old kid who's active, right? Yeah, I took him in to see the doctor, and she looked at his legs, and she's like, well, I don't think there's anything going on. I don't think we need an X ray. But she looked in his ears. Oh, he has an ear you know, looks like he has an ear infection. So I was like, oh, okay, maybe that explains his wobbliness. Maybe there's some dizziness, I don't know. Came home with some antibiotics, and after several nights of that, he he would spike fevers at night, and then, of course, he had all the respiratory symptoms of having a cold or a flu. So I thought, well, maybe, as the flu is really bad flu, couple days of antibiotics and nothing, I didn't see any changes, he would still spike fevers, and one day, we're giving him a bath, and I saw along his spine, he had some bumps, right? And I thought, oh my gosh, I had made a comment to my husband that the bruises kind of make me think of like leukemia, right? And he got really upset at me, like, don't say that, you know. I didn't even know that. I guess my nursing background, but it wasn't like in my forefront. But anyways, whenever we put the kids to bed that night, I lay down on the couch, you know, on my iPad. I looked up like, how does leukemia present in children? And a lot of it was, you know, limping or bone pain, so kids going for X rays. And then I was like, Oh my gosh, you know, but the kids were already in bed. I was still in denial. I said, You know what? One more day, let's do, let's get through the

Scott Benner 6:23
night, yeah, why don't I get one more good night's sleep for the rest of my life? Yeah,

Jenny 6:28
pretty much, right. So. But then, of course, he spiked him a fever in the middle of the night again. So I called, I made appointment for first thing in the morning, took him into the doctor, and she said, I think you should just go to the ER and get all your answers. My husband was with me, with my 18 he was two, my three and a half year old. I said, Well, let's go home first drop Savina off with your dad, mom and I need it. Let's pack a bag, you know, because I knew I was like, This is what was happening. This is what was happening. And they were wanting to send us to a different hospital. And they said, No, we're gonna go to this other hospital, which is one I work at, because that has the stronger pediatric for

Scott Benner 7:06
you were a NICU nurse at that point. How long have you been doing it for? Since 2001 so 2023, years? How did you not burn out? Doesn't that happen to a lot of people?

Jenny 7:17
You know what? I work night shift, and I night shift is quieter, and I'm only part time. I work, I'm fully benefited part time, so I only do 212, a week, and I get benefits. So that's how you don't get burned out, burned out now, but not from that, just from everything else. Yeah, work is my break, my social hour, I guess actually it's my Juicebox Podcast time.

Scott Benner 7:42
Jenny, listen. First of all, I don't think people should be listening to podcast work, but I realize you do, and it's okay

Jenny 7:47
with me. Well, it's NICU. It's the baby sleep. I have downtime. I just

Scott Benner 7:51
have to say that, like a person talking about their home life and then going, I go to work in a NICU for relaxation, yeah?

Jenny 7:59
Well, especially during the pandemic. I mean, I had three kids at home, and I'm like, get me to work. I want to stay up all night. Have a break. I'll

Scott Benner 8:08
see you guys later. Oh my gosh. All right. No no. So Okay, wow. So your background tells you enough, the bruising, the limping, you figure it out, you get them to the hospital and has your husband like is he more on board at that point? Or do you think he finds out in the hospital? Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juice box. When I tell you about cozy Earth, I'm usually talking about the discount use Juicebox at checkout to save 40% I don't think I take enough time to tell you about the quality of their products, superior softness and enhanced fabric that is durable and won't pill. It's guaranteed for 10 years. Temperature regulation, the cozy Earth sheets that I have are incredibly breathable. You're going to sleep several degrees cooler than normal. These products are made responsibly. They're. Comfortable, and there is a commitment to quality, so much so that you will get 100 night sleep trial on the sheets and a 10 year warranty. Why don't you let cozy Earth create a sanctuary within your home? That's your time. You want to be comfortable sitting in those sheets or lounging in your joggers. Maybe you've just returned from the gym or completed a hard day of work. Jump into the shower, and the next thing you know, you're drying yourself off. You feel like a princess. That's how I feel. I feel like a princess when I dry myself off with those towels. I really do same as when I get into the bed and when I put on these great clothes, cozy earth.com use the offer code Juicebox at checkout. You will save 40% off of the bamboo sheets, the bath sheets, or whatever else you decide to buy at cozy earth.com

Jenny 10:47
Yeah, I think you really found finds out in hospital. I didn't push it too much in letting him, you know, like this is leukemia while we're sitting there, because we were there in the morning and we didn't find out before in the afternoon, just because his his dad had was diagnosed with colon cancer. What about a year and a half before that? So I didn't want to, you know, yeah, stress him out anymore. Did his father pass? He did. He passed the sales in 19 Yeah, so August, yeah, this is after he died. Yeah, it was after, but

Scott Benner 11:19
after your son was diagnosed, yeah, exactly, I say. I say, okay, gosh, what's the treatment for Luke? I mean, you said they Yeah, but walk me through it a little bit. What they do the first time? Well,

Jenny 11:31
obviously we were admitted, he had to get a central line placed in his chest, right? So that entails, like, sterile dressing changes, etc, and that's so that I could get draw labs and take it take, you know, take labs in frequently, and they can get blood infusions and all that stuff. But it's chemotherapy. You're basically trying to hit the bone marrow hard, because leukemia is a blood cancer, and your blood is made from your bone marrow, your stem cells in your blood mirror. So you're trying to constantly hit it hard, because you want to kill all of your all those cells. So you have a cycle of that. You hit it hard, and then you wait, you know, a couple weeks or a month, your all your numbers go down, so your immunocompromised, and then they start to come back up, and then you hit it again. You're just constantly doing that. Okay, just

Scott Benner 12:17
my mom had, you know, cancer, and so we got to see her go through some treatments. But how is it different for I mean, it's got to be different for a child, right? I

Jenny 12:27
mean, yeah, definitely he. He's two years old, and one of the treatments was for him, like, an oral steroid. That's really disgusting, right? And here, with my kids sickly in this hospital, we're trying to shove this nasty stuff in his mouth, and he's like, not having it. So as a NICU nurse, I was like, give me an NG tube. They looked at me like I was crazy. And I'm like, now I'm not afraid of an NG tube. He's already sick. I'm going to be giving him all these meds and his, you know, it's torture, like I'd rather have the, you know, have the tube and less stress on him, you know. So it's a lot of medications, and days he felt good, days he didn't, I'd have to draw labs and drop it off at the New Year's lab. Sometimes we'd have to go in for blood products. Some of the medications would make him really sick. Sometimes we had to be inpatient for the medications because some of them were IV. Or if he had a fever, we'd be in the hospital.

Scott Benner 13:19
Yeah, did you place the tube yourself, or did you let them do it both?

Jenny 13:26
So he would get, because he's only two, they would sedate him to do all of this foam he also leukem is found in his spinal fluid. So that meant that he would have to get spinal taps where they would take samples. They would, you know, buy. Basically, they would sedate him about once a month to take samples of his bone marrow, also to do a spinal tap and inject three different kind of medications to attack the Leukemia. So I took advantage of those every time to put the tube in. Yeah, but there were times at home he threw it up. And at first couple of times I if we had a clinic appointment, then I would just let them put it back in. Sometimes we try to go out without but there was a couple of times where I, I was me and my husband did it herself.

Scott Benner 14:08
What was the early prognosis?

Jenny 14:11
It was not very good for him, because he had, like, there's all these different cytogenetics of the Leukemia and his his MLL rearrangement is complicated to explain, but basically, there was no data on his but it was similar to, like, an infant leukemia, and infant leukemia has got a poor prognosis. I mean, I did deep dives into all the stuff, you know, studies on studies and treatment and treatment, and I just, the way I had to get through it was like, You know what all of this data I'm looking at is from years ago, right? And then I know they're constantly targeting treatment to be safer and safer and safer, so I try not to focus on that. But it was, like, probably, I would say less than 40% that he would make it to five years. Wow,

Scott Benner 14:54
gosh. And then there's a reoccurrence pretty soon after, like, so when. Did they they proclaim Him? How do they talk about it?

Jenny 15:03
Yeah, so you kind of, like, by the second or third, end of the second or third month, you want to be at a certain level, and what if you get to that then, like, Okay, your chances are okay, right? So we continued with the treatment. But then about seven months

Scott Benner 15:16
into it, he relapsed, meaning those numbers rose again, meaning, meaning

Jenny 15:20
they found some abnormal cells in a spinal fluid. Okay, that basically we're like, Okay, we have to have a transplant now. Or the car T cells is another thing right now. They can modify your own T cell like, take collector T cells, modify them so that they can see the Leukemia within you, you know, attack your B cells, because it's B cell leukemia, but he was, he didn't qualify for that yet as a first line of treatment after relapse. So we had to go through this in more intense treatment at a lot of it in the hospital. And then after the first month of that, his numbers rose again. And then they said, Okay, well, that cop, that's kind of like a failure to our reinduction. So now he qualifies for T cells, I say, but we're going to do the T cells, but not. Some people now do T cells, and it'll make maybe cure them, or for long. You know, they don't have to have any more treatment for a long time, as long as they have the T cells. But they were like for him, we really think we still have to do a transplant. We use it as a bridge to get him in deep remission, where we like close to zero as possible, of no cells, because that's your best chance of cure when you have a transplant,

Scott Benner 16:28
I see now, and the transplant is the thing that ends up attacking him, is that? Right?

Jenny 16:33
Yeah, so we didn't have any good donors for him, because we all got tested like we were the most, seven out of 12 match. You know, in the registry, there was no good matches. They found a four out of six match of core blood that they decided to use. They were deciding between one of us as a half match, family match, which they can like manipulate the cells to not tech them. You as much. But they decided to go with the cord the first time. Okay, so we did that. And, you know, because his we because his spinal fluid was, you know, where he was relapsing, we were getting our transplant at UCSF, and they really did not want to do radiation on him, because he's only three, like cranial radiation, right? Our doctor was saying, Yes, his best chance of cures radiation, you got to do it, you know. So we had to struggle to make that decision. Or transplant. Who was the one? You know, UCSF telling us not to do it, and then our own doctor saying, No, you should, you should. But he's only three. So we decided, you know, a lot of these kids relapse again, so let's kick the bucket on trend, on the cranial radiation, and not do it this round, because he's so young, if he relapses again, then fine, we'll, we'll do it the second time, because we don't have a choice, right? But we'll buy him rain development time, you know, right?

Scott Benner 17:58
Can I talk to you for a minute about that. Yeah, two doctors say two different things. It's on you. I mean, you're a Nicky nurse, but tough. Yeah. I mean, it's not, like, what's your husband do for a living? He's an insurance broker, so he's not, he's not a cancer doctor. Then, yeah, no, no, no, yeah. So now you're like, you're sitting there. To me, it feels like somebody, it's agonized, oh my god, like somebody gives you money and then tells you you have to bet it up or down on a football game. And you don't, you don't know anything about the game or the teams, you just have to pick a side, right?

Jenny 18:29
Yeah. I mean, I think what ultimately made us like I said, is you want the best chance of life for your child, so you look at that like, if we were selfish, oh, we don't want to do this again. The Fine, let's just do it now. But ultimately, we're like, Well, if he comes out of his alive, we want his body the most intact and without damage. So we can't do the you know, because there's, there are a lot of kids who relapse again, yeah? Like, let's kick the bucket on the radiation. Yeah, just push it off. If you can push it off, as long as we can, Let's not mess with his brain. We're already messing with his brain, because he he's getting a lot of chemotherapy injected right into his spinal fluid, so we're already damaging it,

Scott Benner 19:07
and it feels like you're doing it. Is that right? Like when you make the decision, does it feel, I mean, or is that a, is that a?

Jenny 19:14
No, I just made, we just kind of made a decision. And you know, you're good, you're

Scott Benner 19:19
you were healthy enough not to live in that forever, yeah, yeah,

Jenny 19:22
okay, just got to move on. It all worked out. That's awesome. I mean,

Scott Benner 19:27
jeez.

Jenny 19:28
So he relapsed again. It

Scott Benner 19:31
all worked out right after another relapse. This is why

Jenny 19:34
I say it worked out, because that first year after transplant was horrendous. He was having a lot of GI issues, basically cramping and mucous. He stools. He'd wake me up at night, just not feeling good, losing weight, you know, I'm basically tube feeding in he has no appetite, and then he breaks out in this rash over his whole body, right? That's he's itchy to the point where he's like scratching in the middle of night, scratching his dressing off, that kind of stuff. Stuff, I'd have to change his dressing in the middle of the night, like it was horrible. So when he relapsed, it was like, All right, we have to do another transplant for sure. Yes, we're doing radiation. His doctor decided, because he had lung changes with the first one, well, we're not going to radiate his lungs. We're not going to do the total body. We're just going to do cranial radiation. So that kind of made me feel good, because we'll hit the rest of the body, however, looking at the brain with just the cranial radiation, yeah, and hope we get it all right, good, but not have the total total body radiation also has a lot more side effects later on or late effects, right? So we kind of avoided that, but we were able to start him on a little bit of steroids to calm this other inflammation and get his rash under control. Because before he went into a second his second transplant was when he was basically a week after his fourth birthday, so a year later, less than a year later,

Scott Benner 20:53
hey, do your other kids know you're alive during all this? Like, how do you oh,

Jenny 20:57
gosh, you know what? We're lucky. My in laws live just around the corner here, and so they just were in charge of the other day. Basically, Mima has been tag team, basically, right? But when it came to school, they would pick them up, they would make dinners all the time, or we would tag team. Do

Scott Benner 21:16
you feel like you missed something?

Jenny 21:18
Oh, for sure. I mean, I missed a lot with I was volunteering. My oldest was in kindergarten when he was diagnosed, so I was doing a lot of volunteering in his class. He's in Spanish immersion, so I didn't it. Wasn't able to help him with any of that. I wasn't able to help him with Spanish, and I didn't have the bandwidth, you know, he came home. It was spend time with him. But all right, hurry up, get to bed, because I need downtime.

Scott Benner 21:43
Can I ask what your your youngest? What was his quality of life like for those two years? Is he just a patient, or is he living as well? No,

Jenny 21:51
I think he was living. No, I'm not just a patient. There's days in the hospital, yeah, he's there was some days that were tough, but, you know, in the hospital on the days where he's feeling fine and we're there just because he had a fever, he's got to get antibiotics like, you know, the siblings could come visit. The hospital has cars. They could drive around. This is all pre COVID. Thank god. I can't imagine the ones that had to deal with it after COVID. When you come home, you know, he is a brother and sister to play with, you know, right? So he was living we made it fun everything, you know, a lot of times after she had a tough procedure, it's like, go to the store and buy something. You know, I always try to make, make things positive for him. If she had to go get poked for something, or this or that, well, let's go to the store and get a treat. So it was something he looked forward, you know, he forgot about what he had to go through and was excited about what he got a lot of stuff. Or

Scott Benner 22:44
we were just talking the other night, I'm sorry, I'll cut you off for a second. And we were just talking the other night for a couple of years, we had this obnoxious blow up ghost in our front yard at Halloween. And when I say obnoxious, it was, it was like 30 feet tall. It was, like, taller than the house, you know? And the other night, Arden goes, Why? Like, because, listen, I don't I'm not throwing shit on anybody, but like, inflatable light up things in our front yard is not really our vibe, yeah. So, so now, as an adult, like, just recently, Arden said she's like, I loved it when I was growing up. And I was like, okay, she was, but why did we have it? She's like, it's not a thing you and mom would buy. And I said, you don't remember? And she said, No, after one of your endo appointments, you get this really great a 1c and you were super happy. And I said, Oh, we should celebrate. What do you want? You can have anything you want. And she went out and bought this giant inflatable ghost for the front yard. But she's, she didn't remember that. That's what it was from. Is really interesting. But, yeah, listen, I'm with you. I would have been like, hey, bad day, whatever.

Jenny 23:44
Here's a toy, exactly. I mean, he, like, he left to buy those little cars that you see it like, you know, CVS or whatever. Just right? $10 car made him happy, you know, yeah, whatever is going to make him happy. I mean, I'm all for it, because he's the one going through the tough stuff, you know.

Scott Benner 24:03
Now looking back, did you does he have much recollection of all that? Um,

Jenny 24:07
yeah. I mean, he remembers, like, so we had two, you know, two long inpatient stays at UCSF, because he was had the transplants, basically, and he was just stuck in the room you can't leave at all. So he remembers the days when his immune system was strong enough that his siblings could come and they would play at UCSF. They have a really, really nice gift shop. He always called it the grocery stop. So we always went to the grocery stop. And like he remembers that, yeah, he's he does, what

Scott Benner 24:36
do you think as a family? Are you closer because of this, or did it cause problems? Or how do you think?

Jenny 24:42
No, I think, I think we are, I think because of it. You know, any time that, any chance that we could we My husband was always like, he's the fun planner, right? Whatever we can do once a quarter, we're going somewhere, whether a drive, I live in California, so up or down the coast. Just been stay in a hotel. The kids love that. So I would stay closer. And then, you know, when the pandemic hit, it didn't freak us out one bit. I mean, we were already used to the masking.

Scott Benner 25:09
I mean, cancer gives you a different perspective, right? Like, we didn't.

Jenny 25:14
We were like, everybody's we were traveling. Like, are you sure you would travel right now? We're like, Yeah. I mean, go stay in the hotels. And hotels are like, empty. My kids know, like, don't touch the elevator button. Use your elbow, or don't touch the high end rail. Hold my hand.

Scott Benner 25:29
Listen, I always tell people, like, I think type one diabetes, you know, having a child diagnosed it too. By the way, your your story is the closest I've come to, like, outright crying while I'm recording the podcast, yeah, because hard not to sit and picture your own kids as two year olds, you know, yeah, during while you're talking, it's terrible, yeah, it's not great. But like, you know, Arden was diagnosed at two, and I think now 18 years later, my perspective is that of a person twice my age, if I ever get forced to list the good thing? You know, some people are like, does anything good come from diabetes? I do feel like I've got, like, you know what I mean? Like, when people get upset about things, I look around I'm like, I don't know what everybody's so upset about. Why?

Jenny 26:12
Because you've been through a lot of stress. You're right. You learn, yeah, you learn to just roll with the punches. Oh, Jenny,

Scott Benner 26:20
if the zombies ever come for the hill, I'm just gonna go. I was waiting for this, yeah, yeah, yeah. But cancer is another thing. It's, it's, yeah, listen, I don't judge people's, you know, struggles, one against the other. I'm not scoring it. But, you know, nobody told me Arden had a 40% chance of living when she was diagnosed with type one diabetes, you know, so, and that's not a thing I had to like,

Jenny 26:41
you know, having having the diagnosis of diabetes really makes, you know, you're already worried. He's already at higher risk of stroke, heart attack, even just secondary cancers, because of all the treatment he's had. And so now to have diabetes, like, I haven't been able to get his ANC under 6.5 so I'm trying, but it's a struggle working on

Scott Benner 27:04
it. That's pretty good. Jenny, don't worry.

Jenny 27:05
Yeah, well, I know, but when I hear what everybody else could do, I'm, I'm, that's what I want. You know, of

Scott Benner 27:11
course. Well, how's variability for them, though, are the highs and lows pretty even, or are you bouncing up and down? Yeah, no,

Jenny 27:17
yeah. Like low. Two hundreds is the high, but more of 180s but so well, if we're going to jump into diabetes, we did the Omnipod five. So we did MDI for three months, and we did the Omnipod five, and I just wanted a little bit more control, so I kept reading about the movie and having just more control for the basal rates, because we would have feet on the floor, pretty decent. And I hate having to constantly, like, bug him at work to give, I mean, at school to give boluses, yeah? So now we're trying, we're trialing the Moby,

Scott Benner 27:46
and that runs the control IQ algorithm, right? Yes, the control IQ

Jenny 27:50
so I can, like, you know, turn up his basal in the morning so that we don't have as high of a okay, I'm still learning. I'm still learning to work in the system. We're like, about a month into it now, yeah, and dealing with the tubing and all that stuff. But he, he, he just rolls with it. He likes, he's like, Oh, you're, you know, he likes to show people his devices. He's so used to being poked and prodded that, I mean, when we were diagnosed, actually with the with diabetes, and we had to go inpatient. Well, to back up the way we found it is because we were following up with some renal labs from his renal doctor, and his sodium is all low. So she's like, give him some sodium supplements. This we test in a week. And she also ordered a urine analysis, and that's where we saw how he was building glucose so that she ordered a glucometer, and then, like, two days later, we find out he's type one diabetic, so he was never in DKA or anything. His agency at that point was 6.8 Yeah.

Scott Benner 28:47
Is there any argument to be made? Does the leukemia or the treatments for it could that well, that's helped with the diagnosis that you know what I mean push towards a diabetes diagnosis? I

Jenny 28:59
mean, it's not a typical thing that happens with kids that have there's also not like as many long term survivors of two transplants, right? So when I asked his transplant doctor, the only thing she could come up with is like, well, we've taxed the immune system so much. I mean, it could just be that, or is it that we have auto immune in the family? I don't know, we're

Scott Benner 29:21
a little of both, or, who knows, right? So the the

Jenny 29:24
Christmas party at school of december 2022 22 he was wearing his mask to school, while everybody was like, not, right? But then the other Christmas party, they have food, so he took his mask off to eat. And then Christmas day, he had a fever. And I know there was another student in his class who also had a fever, so that's why, I think maybe caught something then. But because he was still technically immunocompromised, we had, I had to take him to the ER to because then they have to do a blood culture, give him antibiotics, and then they did a respiratory panel, so it came back to get influenza A okay? And then two months later. Or March, beginning of March, he got type one. So I'm wondering if that was the trigger. I don't know. Well,

Scott Benner 30:06
I just checked with, I mean, I asked chat, G, P, T, by the way, as I asked that, I thought, if I ever do anything really crazy, you know how the cops come collect your computer when you're like a really, like, a big, a bad guy, I think they're gonna look at my computer and be like, What? What the hell was this guy doing? Yeah, what's in this guy's head? I asked, Can leukemia, childhood leukemia, or treatments force a type one diabetes diagnosis, that it could immune system disruption, steroid use and pancreatic damage are all possibilities. So, yeah, Jesus.

Jenny 30:36
So we also found out he does have Hashimotos, right? Okay, I can't remember if I knew that before the type one or not. I don't. I don't remember. I didn't want to feel like going back. He's got so his lab history is long. No

Scott Benner 30:48
one wants your life, by the way, you're like, I can't remember when Hashimotos came. Yeah,

Jenny 30:53
so, but for the longest time, we've been following up with a CSH. And, you know, hits vacillate between two and 10, and they're like, well, he's not symptomatic, blah, blah, but after listening to your podcast and stuff, I'm like, You know what? This kid's got so much tech against him. I want to lift him up any way I can. Yeah, in April, I'm like, get we want to start thyroid meds. Well, let's and I think, I think at that time, we had some that were under two, and I was like, Well, I don't care he has, she's like, but it's a daily medication. You know what we take daily medications? He's got high blood pressure, like he's on insulin now, like, it's not a big deal for me to give him a tiny pill. Yeah, I'd rather give him what he needs to not. Like, have any variables out there? You got too much variables I got to worry about in life, your

Scott Benner 31:39
son might be the only nine year old who would find being in the mob relaxing, like, I can't believe the doctor's like, Oh, it's a daily medication. Like, Oh, you think that's our problem? Yeah?

Jenny 31:49
And so, you know, recently we've also, because he had cranial radiation, he's smaller for his size, right? And all the steroids use because of treat, that's part of treatment for leukemia. We actually held him back kindergarten, so he's a year behind his age, and he's one of the smaller kids in class. So we just started growth hormones a month ago, September. So you know, we're giving him thyroid growth hormones and now insulin.

Scott Benner 32:14
How long do you think the growth hormone takes to kick in? What did they tell you? Well, we started off

Jenny 32:18
on a low dose. He'll get labs strong next month, and then she'll go up. So, I mean, it should start work, start working, but as she ramps it up, he'll grow more, and this is he'll have it through puberty. Yeah,

Scott Benner 32:31
I was gonna say this is a thing that you're expecting to do over years. Yeah, she

Jenny 32:35
even said that for some kids when they're older, when they stop it, they don't feel good. So some people keep it going their whole life. Oh,

Scott Benner 32:44
you need a little bit of it to keep you feeling regular, almost. Okay, that's interesting. Did

Jenny 32:50
they tell you why? Well, he had cranial radiation, so I think that, like we did, the MRI of his pituitary gland before starting, and that looks fine, but because we did 10 days of cranial radiation of two gray. So like 10 days of sedate we sedate him. He'd go into this thing, tube or whatever, and they give him radiation. We did 10 days of that. So I think that because of that, it causes growth horm deficiency,

Scott Benner 33:16
I see, but once you get to your level, and they said you might need some just to feel normal. Like, do you know why that is

Jenny 33:23
because they're deficient. They're you mean, even adults, when you go to sleep, you make growth

Scott Benner 33:27
hormone, right? Oh, I see, I see, I'm sorry. So he wouldn't be making as much, so he wouldn't, well, yeah, he makes

Jenny 33:32
it. But this is supplementing what he's not making enough of. I understand. Okay,

Scott Benner 33:37
yeah, hey, um, did you cry? Like, do you still cry? Or, how long did you cry? When did you stop crying? Did you worry about yourself when you stopped crying? Really,

Jenny 33:47
it's really crazy, because I feel like, if we didn't have diabetes, wow, our life would be so good. I mean, we, I, we feel like we already went we went through it. We went through the gauntlet, I mean, and for everything he went through, like he Yeah, we've replacing these hormones, like, not counting diabetes, he's got high blood pressure, so it takes too much for that. He's got some learning issues because of cranial radiation and all that. Like, he's just a little bit slower, and so he just needs more help, right? But other than that, he's just the normal nine year old kid, you know, and life is chomping along. I mean, compared to we've had some friends that passed away from leukemia. We have a friend who's still battling a lot of pain issues that they can't figure out that's debilitating, and I feel like he got through so much so easily. Oh, you sound great. Diabetes. I'm grateful. I'm great. I am grateful. I'm grateful that he's alive. I mean, I look at him every day, because, honestly, I had a one of my manager sons at the time when all this was happening. Her her son was exactly a year younger than him, and they had the birthday the same week, and he he relapsed, but he. He never, yeah, he passed. So to see that the same time we're going through our second transplant, he's going through his first kind of thing. And, you know, to see them go through, we went through, and what happened like, I am great. I'm grateful. Because, you know, to think about not having him, what that would mean for our family, would

Scott Benner 35:19
just be, we just change everybody, in a way, change

Jenny 35:22
everybody. So, yeah, we got the diabetes. Honestly, it sucks,

Scott Benner 35:27
but that felt like a smack in

Jenny 35:29
the face. Keeps me. Oh, it is a smack in the face. Yeah. Like, what the heck? I mean, if we didn't have this life would be good, like,

Scott Benner 35:37
it only took us seven years to get through this leukemia thing, and then boom, here this is, yeah, I would have listened. I gotta tell you, I had that feeling when Arden thyroid was diagnosed. Yeah. What next? You're like, well, diabetes wasn't enough. Like, you know what I mean? Like, like, we'll do another one here. And that slap in the face is, it really does, like, there's no one to blame for it. I guess some people might blame God or whatnot, like, I'm not in that camp, so I'm not in the camp, yeah? So I'm just like, Oh, God, you know this is keeps happening. And she's like, I

Jenny 36:08
mean, I don't know. I just feel like, somehow, this is whatever. This is his journey. This is his soul's journey that we got to just roll with it, you know? Yeah,

Scott Benner 36:16
did you mark yourself as a resilient person prior to this, or is this something you taught yourself? Do you know? Yeah?

Jenny 36:22
No, I think, yeah. My mom taught me to be this way. She went through my, you know, a lot having being a single parent. I saw her struggle a lot as a single parent raising us under my brother so, but I watched a lot of Oprah growing up. So,

Scott Benner 36:39
like I just found people who had it worse than me, Scott, it makes it all Yeah?

Jenny 36:42
Well, you know it really does. It really does people, you

Scott Benner 36:46
know, over and over again that's brought up in the podcast, and everyone always feels like they're apologetic when they're saying it out loud. You know what I mean. But finding its perspective, finding some perspective,

Jenny 36:56
yeah, perspective. And you know what, I always try like, I don't like, I'm a half a glass half full kind of person, even though I'm not getting me wrong, there's days diabetes, it's, it's the has the glass is empty, just like rare in the midst of the day to day. But stepping back,

Scott Benner 37:15
you're not saying, I don't know what you're saying exactly like, but is like, I don't again, I'm not, yeah, I don't like measuring things against things like I think that the worst thing that's happened to you qualifies as the worst thing that's happened to you. But, yeah, yeah. Are you saying that diabetes gives leukemia, childhood leukemia a run for its money? I think

Jenny 37:34
it's just because I'm so far removed from all that, right? You know in the past, yeah, this is a 24 hour a day thing that I'm thinking of, yeah, like, I don't have that break any like, I don't even think actually, I guess this. This is a good thing. Is it does keep me from thinking about that, because I don't think about relapse. I mean, I I'm grateful that we caught it early, because had we caught it and he was in DKA, I would have been thinking relapse. I would have been a mess.

Scott Benner 38:03
It's interesting. Are you? Are you saying like I climbed out of one pool of shit and now I'm in a different pool of but it stops me from thinking about the first pool. Yeah, for sure. So it's awesome. It

Jenny 38:15
does. It does. And if he ever does start to get ill and whatnot, I think my brain is going to take diabetes and not, yeah, not, not before I want to step back and give kudos to my son, my oldest son. So the second transplant, like I said, we didn't have a good, unmatched donor out there, so they decided to do a family member, and they picked my older son.

Scott Benner 38:35
Oh, wow. So he did a, he did a bone marrow donation. Yeah,

Jenny 38:39
he did a bone marrow for that. That that meant, like he had to get a central line, had to sedate him for that, and then he was connected to this apheresis machine that kind of spun his blood through it and collected his cells, gave back his red blood cells back to him. So he got to spend two nights in the hospital. And he loved it, because it's like, Oh, I get attention now. You know, he's like a king, yeah, yeah, Grandpa, grandpa bringing him Legos. So, yeah, he so technically now Johnny is his Chimera brother, right? Like he's genetically Johnny has Anthony's blood. So if Johnny commits a murder or something, or something leaves blood footprint, like Anthony could be blamed for it.

Scott Benner 39:24
Do they tease each other about that, like I'm gonna commit a crime and

Jenny 39:27
not yet. I think maybe when they're older, they you know, yeah, yeah, not yet. But I wouldn't be surprised if when he's older, he says

Scott Benner 39:36
that, Jenny, wow, you've a genuinely good way about you for having been through so much. I'm sorry to ask you, did this have positive or negative impacts on your marriage? I think positive,

Jenny 39:47
I mean me. I think the way me and my husband got through this is like we give each other space to deal with it our own ways, without, like, nagging each other, you know, divide and conquer. I think in some sense, he probably. Only, especially with diabetes, would probably say that because we don't have as much time, or I'm so focused on the diabetes, because it really is more my thing, like he does. I've tried to have him listen to podcast. He hasn't yet. He doesn't want diabetes and it being the number one thing, and, and I'm like, it, it just, is it just, you can't ignore it away, that's for sure, yeah, no, exactly, until I feel like the more work, and I'm trying to get him to help and understand it more, or at least understand the algorithms and the pumping so that we together can make better decisions, because it's easier, because his brain, I think, is better than mine for this kind of stuff, but really,

Scott Benner 40:36
I think so he better with numbers, or I think he's

Jenny 40:41
just a good critical thinker. And like I said, I work night shift. I'm I'm a zombie mom a lot of times. Okay, so I just think, you know, having his help would be, I'm trying to get him there. We're working on it.

Scott Benner 40:54
Yeah, well, he's a boy, so it'll probably take him till he's 53 but that's how old I start to feel like an

Jenny 40:59
adult. We're working on it, but, like I say, we've because, you know, he's lost his father. He's definitely a family man, you know, and that's what attracted to me, to him, to see how he is with his parents, and the way his parents are with each other. The kid, my kids, as much as the stuff that we've been through, we we go on vacations a lot. These kids have been to Disneyland almost every year. We just do fun things, because we know that this is the time that we have with them. You know, the older they get, the less time we're going to have with them. And not knowing what Johnny what was going to happen with Johnny. But, you know, making memories is the most important thing, and so I think, in that sense, I think it's brought us closer. And I'm hoping that also my older two See, they see the struggle that I go through every day with Johnny, that, you know what? They got to behave. They got to do good in school. They got to figure out their way, you know, and not be rebellious teenagers and all that stuff, because I don't have tolerance for that.

Scott Benner 41:57
Listen, if any of this happens, I'm driving us all off a bridge, just so, you know, yeah, I know, but, but do you think that they feel ignored?

Jenny 42:07
No, no, no, no, no. Okay, not at all. I mean, there may have been times during the tough treatments and stuff, for sure, I think because my daughter is 18 months older than Johnny, so I'm sure they were, yeah, she was, but I don't, I don't think they feel ignored, because we, you know, we still do. You know, not every we don't sit down at dinner table every day, but at least probably twice a week. And we're always doing fun things as a family. And Jenny,

Scott Benner 42:32
I have to ask you, though, like, you know you're doing fun things as a family, you know, like you're trying to bring your husband along with IB, but do you do something for yourself. Like, do you like, I don't know, shoplift for the thrill. Like, what are you doing? You know? Like, what's your thing?

Jenny 42:48
I don't know. I walk my dog. I walk the dog here and there. Like, I go to work. I don't know. I don't this is my this is my time to be a mom. I mean, well, I like, you know, I'm going, I went saw a salsa concert a couple weeks ago. I'm gonna go see another salsa or, you know, Colombian group with some friends next month. So you do things, yeah? No. I mean, I can we do things like, go get together with friends. I have, you know, friends I get together with co workers to get together with. So I do, I have, like, once a year, a group of girls that will go do a week in a way? Yeah, I'm

Scott Benner 43:22
just trying to figure it out. Because you're not like, you're not striking me as well. What I do, Scott, is massive amounts of cocaine. Like, you know what I mean? Like, like, you're not, you don't seem like you're an escape person. So I'm trying to, like, I'm not really trying to figure it

Jenny 43:36
out for you. I take a lot of naps during the day. I'm a Napper. I'm a lab

Scott Benner 43:41
for people listening who are maybe don't have the same like, I don't know, just whatever it is built into you that lets you go, like, yeah, childhood, leukemia, diabetes, it's fine. Well, like, you know what I mean?

Jenny 43:52
I guess I think, like, we have a, we have a staycation home, you know, I haven't been using it as much with we have a nice pool and all that. Like, I don't know, you just go somewhere and chill out. Just try to chill, try to relax, try to, you know, take things one day at a time.

Scott Benner 44:09
I know you're making it sound incredible.

Jenny 44:12
Well, like I say the Leukemia. I mean, listen that that was tough stuff back then. So I've already been through and back then, yeah, like there were days where I'm crying, I'm holding my child in the Rocky chair. He's feeling sick. He's vomiting on me. I mean, that's the trenches, that's divine and contour, that's grandma grandpa helping my kids see me cry. What are you gonna do? You know, but we're past all that now, and now I'm just so grateful.

Scott Benner 44:38
So time, does heal then,

Jenny 44:41
oh yeah, for sure. I mean, I look back, you know, it's still painful. Sometimes I look back at the pictures for those years to see, you know, he's changed so much. He'd have hair, don't have hair, grow hair. You know, he'd be chubby from steroids, or super skinny back and forth. And. And there's some kind of weird nostalgia with all that I don't know, like I try to just see past and looking I don't know. I'm just grateful,

Scott Benner 45:06
yeah, no, you're actually, you're actually able to see his photos as, like him growing up pictures. Yeah, exactly. That's incredibly healthy. I think we should sample you and figure out, I

Jenny 45:17
mean, yeah, you gotta look at the so silver linings. I think that was one of the things I put in my thing for you. Like, try always look at the silver lining of things. Like, something bad happened. Okay, so this is not where the road we wanted to take, but like, where's the positive in this? You know, right, where can I see something good out of this? Rather than, Oh, this didn't go the way I wanted, I mean, and then, just constantly, my mantra is, like, everything's gonna work out. Everything's gonna work out. Like, I guess that's my coping. It's gonna be okay. Everybody's gonna work out. Do you believe it when you're saying it, yeah, I do, yeah, I do. I mean, yeah, diabetes, diabetes, and all the all the variables, is very testing. You know, like the other day we so we started the Moby, we were using his leg initially with the regular auto, soft XC things, and then I tried it on his belly. Boom, he was sky high. Turns out he had a kinked cannula. Of course, it's like right before bedtime. So then I was able to get some true steel ones from somebody else. I Well, let's put this one in. He didn't really like the needle part. But the good thing about the needle is it doesn't bend right Johnny, you know, let him see the positive. And so the next time we had to change it, he wanted to go back to the other one. So I tried it again, and boom, another bent cannula. So, you know, go through the highs, lead to lows, things and all that.

Scott Benner 46:37
Yeah, you think there'll be a day where you look back on diabetes and and have the same kind of distance that you have now with with leukemia. Uh,

Jenny 46:46
well, you know what I think? Because, I mean, here's another thing, like, we're so lucky. He's, in a sense, heavy, because I listen to a lot of your the night he was diagnosed with diabetes and we were inpatient. We went inpatient for one day to get the teaching. Because they were like, oh, you know your nurse, you could do it outpatient. And was like, no, no, no, I am not a WD.

Scott Benner 47:06
I just kind of watched sleeping babies. So like, hold on, yeah. Like,

Jenny 47:09
admit us to treat us like I don't know anything. I didn't know what a Dexcom was. I didn't know any of this stuff was, and I immediately went to Facebook, because when what got me through cancer was a Facebook group called mom collegey. And I would go there and search, like, how many people had second transplants or whatnot, right? First transplant relapse. I just read through stories and look in the history, and I would just focus on the positive. I'm like, I'm not looking at the negative stuff. I just want to know the positive. Yeah, so that's how I found the Juicebox. And I just started listening right away, I think, just learning through that, but also, like, just knowing, I mean, through the podcast, I learned about all the different pumps and all the different technologies, and he, you know, he came about right after Omnipod five came out. Now there's Moby, and there's just like stuff I feel like constantly coming out. And I don't know if AI one day is going to play a role, but I feel like as he gets older, things will get easier, in a sense, because technology is going to be helpful, so it'll be more manageable, you know, yeah,

Scott Benner 48:15
no, I tend to agree with you. Actually, I've also decided I'm going to call your episode, Three Little Birds. Three Little Birds. What is that? It's the Bob Marley song.

Jenny 48:25
Oh, Three Little Birds. Yep,

Scott Benner 48:28
I was, I sang it to Arden the other night. She was having a tough time. And, you know, with, like with she's really pretty significant needle phobia, and so she had, she had a tough time, and it was over, and we were in the car going to somewhere together, you know, don't worry about a thing. And she, like, looked at me. I was like, because every little thing's gonna be all right. And she's looking at me, like, Oh, great. This is the guy I get to, like, get me through it. I just told her I was, I believe it, though. Like, yeah, I really do. Like, everything, like, until it's over. Everything else you're alive for, so, yeah, you know, a lot of it is, I mean, I mean, don't get me wrong, if you were trapped under a car after an accident, I don't know if everything, a little thing is going to be all right, but yeah, yeah, maybe that's, that's the end for you, right? But, like, Yeah, but up until then, these little things that happen you don't recognize in the moment that a couple of years from now, you might not even think about this anymore. And if you could treat it more like that in the moment, it would be more manageable, I think. And it sounds like that's what you did, yeah, yeah.

Jenny 49:35
Now I'm gonna looking at three pictures in my Three Little Birds hanging on the wall here picture my kids. Now I'm going to call them Three Little Birds. My Three Little Birds. Yeah, I had another name for you. You could also call me an endo mom, oncologist. Do people? No, I didn't know. I was going to know so much about none of people are like, Oh, you could be a, you know, oncology nurse. And I'm like, No way. Now it's like, oh, you can be a, you know, endocrinologist, nurse. Like, no, I just want to be a NICU nurse. Yeah,

Scott Benner 50:08
it's good. Also, I would just like all this to go away, please. Yes,

Jenny 50:11
exactly.

Scott Benner 50:15
There's times where you're like, grateful for the things that you've been able to amass and knowledge. And then there's times where you just wish, like, I wish like, I wish I didn't have to think about any of this. Oh yeah.

Jenny 50:24
I mean, you're, I mean this, I still think about, like, what if none of this ever happened? How would our like be different? You know? Yeah. I mean, it wouldn't be, I don't think it would be that much different. But you know that we may have done more trips International, or, you know what I mean, like different whatever, or who knows, or different sports, or you know, the kids would have, you know,

Scott Benner 50:45
but you don't think about it like in a sad way, though. No,

Jenny 50:49
it's just every once a while, on tough days, things will go by, you know, the thought, but I don't sit there and more mourn or suffer over

Scott Benner 50:57
that. Jenny, you know the person who's had, you've never had depression. Have you no? I've never had depression. You're not an action person either. Are

Jenny 51:04
you no when he No, when he went, when he was diagnosed with leukemia. I did. I did go start to see psychologists and go cry my heart out. But it's also because I needed a doctor notes to be off of work, you know? But

Scott Benner 51:18
well, that actually brings me to a question I've had through this whole thing. Your insurance handled all those treatments? Yeah,

Jenny 51:25
wow. Like you're not allowed to say, am I allowed to say, my insurance? I have great insurance, yeah? Kaiser. Kaiser,

Scott Benner 51:31
well, Kaiser, you're not under a mountain of debt. No,

Jenny 51:34
you know, I think because I'm an employee, and I'm, like, think about it, I'm part time. I work point six employee for Kaiser. I have awesome insurance. I don't pay for anything. My out of pocket for each individual is like 1500 and it's family, 3000 okay? And that's it. And

Scott Benner 51:52
then Kaiser is a health system. Is that, right? Like a hospital health system, yeah?

Jenny 51:55
Like an HMO. And then with all the transplant stuff, like they, you know, we did our own stuff here from Kaiser with our oncology, but then the transplant we go, we go to UCSF for that. Okay, so they, you know, they pay for all that. I know that that's been a blessing. We haven't had that financial stress. I was able to take time off of work. My husband could work from we didn't have that extra burden. Some people go through with cancer. We're financial or lose insurance, or once person has to stop working. Like, we didn't have that, okay, so that was helpful, yeah,

Scott Benner 52:26
but do you think working for a hospital system helped you? Like, do they generally have better insurance? Or is that not always a given?

Jenny 52:33
I don't know. I don't think that's always a given. Okay, okay,

Scott Benner 52:38
all right. I didn't know. Like, that was something that always

Jenny 52:40
happened. Good plan, but I don't know if it's always a given. And, you know, right away we were with the diabetes. They're, they're on, you know, they support technology, like, right away they put a Dexcom on, and it was the first thing they did. We walked in, we were admitted, awesome. So that was, that

Scott Benner 52:59
was good. Did you hear about the podcast because you knew to search Facebook because of your leukemia experience? Or did someone tell you about

Jenny 53:07
because I I looked up? I think that might have been the only one I joined. Maybe I joined another one and I deleted, I don't know, just no because of the moncology that was my support. When I was impatient with him, with all the tough days I would always go to that and read stories. I post things, people respond, you know. So that's what I was looking for, and that's what I found in the Juicebox Podcast. So I don't ever call my Endo. I go straight to the Facebook group and I ask questions there, and then I get an answer in 510, minutes. And it

Scott Benner 53:38
works out for you. Love it. It works out. Tell me if I'm wrong about this. It feels to me like when somebody posts something, you get back enough from enough different people, varying answers that you can kind of cobble it together and then see, basically,

Jenny 53:53
you feel confident in it, because it's not it's it's people with experience that are living it, that are giving you the advice, yeah, you know.

Scott Benner 54:01
And you're able to see something that's maybe cockamamie, and go, Oh, that doesn't I'll push that aside. I'll just take the part, yeah, yeah. You kind

Jenny 54:09
of weed through stuff, sure. Okay, even, you know, people post advice or ask questions and advice. You kind of like, yeah, that doesn't sound right, or, Oh, this sounds right, you know,

Scott Benner 54:17
yeah, no. I mean, listen, it's, I don't listen. I diabetes.

Jenny 54:21
This experience with diabetes would have been, would have been a lot worse, not for you. So thank you so much for what you've done. I'm serious. I would have been a lot harder.

Scott Benner 54:32
I can't I can't let you do that, because you're, I am gonna cry.

Jenny 54:36
You're making me tear up. But no, it I feel like so supported with the community, and it's just at my fingertips, you know. Oh, I'm

Scott Benner 54:44
so happy. So it sounds silly to like, 20 year old me who's listening, yeah, that Facebook group is like, I don't know that I could be prouder of something than that, you know? Oh,

Jenny 54:55
yeah, you should be proud of it. I mean, it's. What I go whenever, when I click on Facebook, that's what I'm looking like. What's new, what's going on. What can I learn? You know, that's awesome. Can I help? Who can I help? How can I help?

Scott Benner 55:07
Yeah, I sent somebody asked me for some examples of what I thought the podcast did for people, and I was able to like just, all I did was just search for a post where people were talking about the podcast, and I like, basically, they're writing reviews in their comments. You don't kind of realize till you see it like that. And as I went through it's, I realized it's adults, it's caregivers, it's young, it's old, it's it's there were comments in there from people who don't have diabetes. Were like, Oh, I found this group. And, you know, my thing lines up enough with diabetes that like it helped me. And I was like, geez, exactly,

Jenny 55:43
you still take you can still learn from it. So didn't expect, no, you've created is amazing, and it's a great legacy for you. Oh,

Scott Benner 55:50
oh, that's lovely. Thank you. Oh, you're very welcome. I'll have Facebook group owner put on my tombstone. There

Jenny 55:55
you go, creator.

Scott Benner 55:58
Thank you. Yeah. So then so the people, like, years from now could walk by and go, Why do you think this was celebrated? And then they can wonder about it all

Jenny 56:06
day. I'm sure there'll be lots of people that come by and put flowers. So

Scott Benner 56:10
that would be lovely. I wish

Jenny 56:13
it's actually one of my posts that I because immediately was, like, told the whole story about, you know, not so much detail about his him having cancer. Girls like, is this a common thing? Who else can I find that had transplants and leukemia, that had diabetes? Now, you know? And you reached out, Hey, if you ever want to be interviewed. And I was, like, interviewed, what? Like, oh, because

Scott Benner 56:34
I figured your story is so unique. Like, it's got to be fairly unique, you know. And like, but, but then there's always someone else who's, you know, like, Oh God, it's too unique. I'm never gonna find anybody with a story. So that's why I would like to, you know, wanted to highlight yours. And I'll tell you even, like, the day I had the girl on who was, like, allergic to insulin, somebody said to me, do you think this is going to be interesting to most people? And I was like, well, first of all, I find everybody's story interesting. But secondly, sure me too, yeah, but somebody else will care. And it wasn't two weeks later that a doctor from like, across the country reached out and said, Hey, I've got a patient here. We've been struggling to help them. I heard your podcast, you know, tell me what they did, because I think that's what's going to help my and by the way, it's helped like, four other people since then. And so

Jenny 57:19
networking community. Really cool, actually. All

Scott Benner 57:23
right. Well, awesome, Jenny, is there anything we haven't talked about that we should have let

Jenny 57:27
me see? I'm kind of had my little notes and stuff, but I don't think so. I think we've covered it all cool.

Scott Benner 57:32
Generally, I'm pretty good at getting through this stuff, yeah, but I worry. I mean, I was

Jenny 57:37
nervous for sure, were you? But, oh, I get nervous about stuff like this, but I was excited too, so and I feel like I've been I've known you for a long time, because I hear your voice all the

Scott Benner 57:48
time. Jenny, we're friends. That's fine. We're friends, yeah, yes, as long as you don't show up at my house and kill me, you and I know each other, and that's fine.

Jenny 57:56
I'm not I'm not gonna go to jail for everything I've been through. No way

Scott Benner 57:59
my son, my son, is always like, one of those people is going to kill you one day. And I'm like, why don't Don't say that. Like, I'm sure that's not going to happen. He goes, Okay, I don't think so. You know, I told him. I'm like, we have respect for you. Okay, you're very nice. Just a great percentage of the people I meet are just so wonderful. Like, really, really, just 99.9% of you guys are just, you're awesome. And even some of you that are weird, like, I even, like, you know, yeah,

Jenny 58:27
I get it. I love listening to all the different stories, all of it.

Scott Benner 58:30
I do too. Actually, I I found myself reminiscing today, because this is the, this is like, I'm finishing up recording the 10th season of the podcast right now. And I looked at my schedule into 2025, and it's already full, like, into, like, the first four months, yeah, for recording. And I thought, I'm gonna make this podcast forever, if I can.

Jenny 58:51
You could, because there's always more people, there's more stories, there's more that, you know, even the technology, the pumps, there's just so many things that are constantly going to be evolving. You totally could. And the story, stories, and you can, actually, you can have people come back right and tell stories. And that's

Scott Benner 59:07
the interesting thing, because people come back on and I won't remember them, so it'll be perfect, because I'm my memory is so terrible, like, I feel like I'm the same now, the whole thing just is like a it's like a stew almost. You know what I mean, like, at some point I'm just like, This is good. I don't even know what's in it, yeah, but, but I know. But I know, if it was missing something, it wouldn't be as good, you know? So anyway, all right, well, I'm down. I'm calling this Three Little Birds. All right,

Jenny 59:34
Three Little Birds. Thank you. You just renamed my kids. Now they're my Three Little Birds. Well,

Scott Benner 59:38
great. If they don't like that, they're gonna blame me, so it's okay.

Jenny 59:41
Well, maybe they'll come kill you, right? My mom called me a bird because of you. Can

Scott Benner 59:46
you imagine if that's the last thing I hear? Actually,

Jenny 59:50
no, maybe, maybe one, one year I'll dress him up as birds for Halloween. Oh, my

Scott Benner 59:54
God. I'm just imagining myself running down an alley with like a 25 year old going, hey, thanks. A lot, buddy,

Jenny 1:00:00
yeah.

Scott Benner 1:00:03
Thank you so much. No, Jen, it's my pleasure. You were terrific. Thank you. Hold on one second. Okay,

thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox this episode of The Juicebox Podcast is sponsored by cozy Earth. Cozy earth.com use the offer code juice box at checkout to save 40% off of the clothing, towels, sheets, off of everything they have at cozy earth.com if you're living with type one diabetes, the after dark collection from the Juicebox Podcast is the only place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma, addiction and so much more. Go to Juicebox podcast.com up in the menu and click on after dark there, you'll see a full list of all of the after dark episodes. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way, recording.com, you got a podcast. You want somebody to edit it. You want rob you.

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Christian, 26, misdiagnosed as type 2, is a driven Mormon engineer managing T1D successfully while worrying about less disciplined diabetic siblings.

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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 0:00
Welcome back, friends. You are listening to the Juicebox Podcast.

Christian 0:14
My name is Christian. I am 26 years old. Live in Utah, and I have type one diabetes.

Scott Benner 0:22
Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d, exchange.org/juice box and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juice box. It should not take you more than about 10 minutes.

This episode of The Juicebox Podcast is sponsored by the Omnipod five learn more and get started today at omnipod.com/juice. Box. Check it out. Dexcom sponsored this episode of The Juicebox Podcast. Learn more about the Dexcom. G7 at my link, dexcom.com/juice box. I have a limited time special offer from ag one for you. Ag one is offering you a Lulu Lemon exclusive everywhere belt bag and an ag one welcome kit with your first subscription, while supplies last, with your Lulu Lemon membership. So make sure to check out drink. AG, one.com/juice box to get this Lulu Lemon offer that's drink. AG, one.com/juice,

Christian 2:15
box. My name is Christian. I am 26 years old. Live in Utah, and I have type one diabetes. I mean, I live in Utah, I don't know that I'm part of anyone's gang, but,

Scott Benner 2:33
oh, really, oh yes. I

Christian 2:50
yeah, I don't really know many people here in Utah that have type one. Actually, there certainly are many Mormons of us out here. Yeah,

Scott Benner 3:15
I was 25 Yeah, about 18 months ago, almost exactly yeah. So I got

Christian 3:27
diagnosed about a week after I defended my master's thesis,

Scott Benner 3:33
and about two weeks before graduation. So you know I would Yeah.

Christian 3:44
I had all the classic symptoms, of course, but I didn't. I associated it all with like, I'm trying to jam and get this thesis done. I have this going on. And I ended up having to withdraw from a class because I just couldn't keep up with everything. And didn't even notice that I was losing a bunch of weight, etc. So yeah, it was certainly a very busy time. Well, I guess to go back a little bit, I was initially diagnosed with type two diabetes almost eight let me think I can do that maybe nine months prior. So I like go into my doctor, you know, a normal routine appointment. They do blood work, they call me. They're like, Hey, your a 1c. Is 6.4 you have type two diabetes, 24

so my response was to say, Okay, thanks, and do nothing. I ignored it. Completely ignored it didn't do anything.

Scott Benner 4:53
They just said, manage with diet and exercise.

Christian 4:59
Because. Historically, yeah. I mean, throughout college, I, you know, I gained some weight, dropped off some but, like, I play a lot of sports. I'm a relatively active person. Yeah,

Scott Benner 5:11
I don't know 510 not super average.

Christian 5:17
I honestly don't, I don't know maybe around 200 Yeah,

Scott Benner 5:31
maybe 180 Yeah, something like that. I

yeah, I don't know,

Christian 5:46
my gut reaction was just to kind of cry about it, feel really ashamed, and then say, Yeah, you know, it'll be fine, whatever. I'm ignoring it, but at the back of my mind not think

Scott Benner 5:58
about it, my grandma, but you know, she's old. No, I was ashamed.

Christian 6:10
I mean, I'm just doing my thing, whatever masters program. I got pretty sick. I think it might have been COVID. I don't know. I didn't take a test. January, start dropping weight like crazy, pee in every hour, etc. You know, I think I ended up losing like 30 pounds. For context, my brother has type one, as does my sister. So I have two siblings with it. I have a

you're testing my they're both young. I'm the oldest of seven, so they're both younger.

Scott Benner 6:52
My brother was

Christian 6:53
diagnosed about 10 years ago, and he's 22 ish, and then my sister was diagnosed while I was in college, so I don't know, maybe five years ago,

Scott Benner 7:08
civil engineering. No, I didn't know that you could get diagnosed as an adult. She was maybe 11.

No, I didn't want him to know.

Christian 7:36
I'm pretty private, yeah, but mainly about things I don't like. I'm selective about it, like I'll tell people about, you know, the time I threw a guy out at home plate, you know, in eighth grade. But like, not diabetes.

No, no, my gut reaction was, no one will ever, no one, besides my wife, is ever gonna know this.

Scott Benner 8:08
Yeah, yeah, yeah.

Christian 8:19
She accepted it and said, That's okay, you know, do what you want, but unbeknownst to me, ended up talking with my mom about it

Scott Benner 8:27
down the road, yeah,

Christian 8:43
yeah, my vision kind of starts going. My wife is really trying to convince me that whole last semester to, like, go to the doctor, just go see what's going on. And eventually I relent, because I had this weird smell stuff going on. I don't really remember, go to the doctor, and they're like, All right, let's do blood work, see what's going on. This is in February. He's like, so what have you been doing the last six months? I'm like, What do you mean? Like, have you changed your habits at all? I'm like, no, like, I eat too much chocolate. Maybe. He's like, Well, your ANC is 13.7 and I was like, Oh, is that bad? And he's like, Yeah, I don't know, so I'm going to refer you to endocrinology making.

I got the vibe that it was a little like, yeah, serious, but endocrinology didn't have an appointment for two months. So, you know,

nope. So just going back and, you know, trying to get my masters done, and eventually, my wife convinces me to go to another doctor in. April and show up, and he's like, so your fasting blood sugar this morning was 600 I think, and your ANC is 14.7

Scott Benner 10:12
you should go to the ER,

Christian 10:16
I don't know I once I was on insulin. I didn't realize how terrible I was feeling until I like felt better,

Scott Benner 10:24
if that makes sense, yeah, exactly. Yeah. I have one. She turns one on Sunday. Thank you. No, you're good. You can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juicebox, the Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes. The Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends, and the app will also provide you with a projected a 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juicebox when you use my link, you're supporting the podcast dexcom.com/juice, box. Head over there. Now, spring is on the way, the clocks are changing, and you are in need of a fresh start drink. AG, one.com/juice box. AG, one offers me incredible energy in the form of a foundational nutrition supplement that I think you would enjoy as well, and I have a special offer for you. Ag one is offering a Lulu Lemon exclusive everywhere belt bag and an ag one welcome kit with your first subscription. This is while supplies last, and with your Lulu Lemon membership. So make sure to check out drink. Ag one.com/juice, box to get this Lulu Lemon offer that's drink, AG, one.com/juice box. My daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then, that's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once, omnipod.com/juicebox, get a pump that you'll be happy with forever.

Christian 13:34
Yeah. So I go to the hospital, and I felt stupid being in there, because they were like, I'm like, Yeah, I need to be here, but I feel totally fine. Ended up being in DK. I was there for a few days, and hospital was not very eventful, except for the fact that the doctors

weren't very competent.

I mean, the guy who admitted me, I was like, So what's going on? He's like, Yeah, you have type one diabetes. And I was like, Oh, okay. And then the attending, before I left, gave me paperwork that said type two diabetes. And I was like, Hey, why does it say type two? And she was like, it doesn't matter which type. Just don't worry about it. I'm like, Huh?

Scott Benner 14:12
She's like, just take six units with all your meals and it'll be fine. Yeah, yeah. Right now my blood sugar be like 500 all day. Yeah, no.

Christian 14:36
Well, I called my mom when I was in the hospital, and that's when she was like, Yeah, Bri has been

Scott Benner 14:43
talking to me,

Christian 14:46
and she's like, why would the doctor tell you that you have type two when you have two siblings and a cousin with type one diabetes?

Scott Benner 14:55
So she was pretty ticked off. Got

Christian 14:57
a Dexcom in the hospital, which was nice. Our. Daughter is pathogenetic Lottery, because my wife has an uncle and two cousins with type one, and I have a cousin and two siblings and me with type I have Hashimotos, as do both my siblings and my dad. My mom has rheumatoid arthritis. My dad had ecromegaly, but now that I think about it, that might have what caused his, uh, his little thyroxine dependence, I'm not sure.

Scott Benner 15:26
No, not that I know of

Christian 15:30
Crohn's is all over my mom's side of the family.

Scott Benner 15:42
Yeah, yeah,

Christian 15:44
yeah, yeah. I didn't think it was doing much, because I started taking at the same time I started taking insulin, you know. So I was like, Yeah, I feel better, but do I really need this pill? So I stopped taking it for a while, and then I was like, Yeah, okay. I

Scott Benner 16:06
her, yeah, she's too young.

Christian 16:13
I'm not sure. Partly wants to, but part of me says, like, there's nothing you can really do about it.

Scott Benner 16:19
I don't know. We'll decide later. I think,

yeah, yeah, and

Christian 16:46
we had just found out my wife was pregnant, so it was all it was all sorts of fun.

Scott Benner 16:55
Yeah, I

Christian 17:10
I think whether or not it's a good thing, I felt relieved to be diagnosed with type one, because I didn't feel embarrassed about it. I didn't feel the need to hide it, so it was almost A relief to like, be like, Oh, okay, yeah. I

Scott Benner 17:44
Yeah, yeah, for sure.

Christian 17:45
I have no problem if anyone wants to talk about diabetes, but like, I would have never done that. You know, two years ago.

Scott Benner 17:58
I think it's just the whole like,

Christian 18:00
I didn't cause it. I don't need to feel feel bad about it. And it's also kind of unique. You know, not many people have type one, so there's a lot of questions and a lot of interest, rather than judgment.

Yeah, exactly. I can tell them about my insulin pump instead of like, Oh yeah, you know, did

Scott Benner 18:27
this to myself type of thing for sure. Yeah, I

Yeah.

Christian 18:56
So I started off with, you know, basal R, and I don't remember, Novolog or humilog, and I think I honeymoon pretty decently, because after the first couple weeks, it was really easy to manage.

Yeah, I asked if it was Lada, and they said, No. They think it was just a slower onset that

Scott Benner 19:21
kind of took off.

Christian 19:33
Well. My first thought was, I want to get a pump as soon as possible, not because of any management reasons, but because I really, really, really hate needles. My brother has been doing MDI for 10 years. He's never used a pump. He won't even use a CGM. My mom and I have been trying to convince him for a year, and he I even sent him some. I was like, here for free. On me. Try these. He wouldn't. I.

We're very, we're a very, very stubborn family.

Scott Benner 20:21
I don't,

Christian 20:23
I do know his habits, and I can draw conclusions from there. So I don't, I imagine he does okay, because he does care. But, like, I know if he goes low in the middle of the night, it's a eat the whole cereal box, or if he's gonna have a cupcake on the weekend, it's, you know, eight cupcakes. And he obviously doesn't know what's happening with that, because he's not testing every two hours or anything.

I think so, although he's told me he goes sometimes a few days without testing. I

Scott Benner 21:00
Yeah,

Christian 21:09
no, I know he injects his you know, no vlog, but he said he just hates the feeling of having something on his skin. And I'm like, Dude, the g7 is so small you won't even notice it. And he's like, Yeah, I will.

Scott Benner 21:26
Maybe, I don't know.

Mm, yeah,

Christian 22:01
I wish he would, just because I don't want him to have any bad outcomes. You know, I mean, so far, he's doing fine. He has no complications or anything. But he's 22 and I want the best for him when he's 62 I hope so he's dating a girl. I'm hoping that if they get married, she can be the one to, you know, be like, Hey, come on,

Scott Benner 22:26
because he's certainly not going to Listen to

me. Yeah,

Christian 23:02
the thing is, she was in like, second grade when I moved out of the house, so most of her growing up, I haven't lived there, and they live, you know, a 23, hour drive away. You know, I know her, but I don't know her experiences growing up as much. Yeah, she uses the T slim, but their insurance doesn't cover Dexcom, so she has a libre, right? I

Scott Benner 23:44
I hope so. I I know my sister

Christian 23:48
has a better a 1c than my brother, but not for caring. She doesn't care one bit. Yeah, I think she has about a mid sixes, A, 1c, and it's because she's 300 and then 50, and then 300 and then 50.

I think my mom does the best she can, but she's, you know, 16 and off doing stuff, and there's only so much she can do about it. I

Scott Benner 24:25
Yeah, yeah,

Christian 24:38
yeah, yeah, I mean, I'm, I mean, I'm an engineer. I'm very, I don't want to say type A, because I'm not, but I'm, I plan everything. I'm very organized, and, like, learning diabetes was very easy for me. Like, it just made sense. Like, the numbers, like, I've done math a lot harder than that. I didn't really get a. Lot of help. My first two endos were both useless, so I learned most of it from the podcast. And then, well, I thought I did, until my honeymoon ended, and then I was like, whoa. This is a lot harder than I thought it was going to be. Yeah, my insulin needs about doubled in about two weeks. I mean, maybe a week, because it was interesting. Over those first six months, like I would have a few days where my insulin needs would go up a good, a good bit, and then maybe a few days where they would come down quite a bit. I was low all the time, and it was kind of unpredictable.

Scott Benner 25:41
Yeah,

Christian 25:47
I mainly started with just kind of random episodes, and then I listened to the Omnipod five series, And then then the Pro Tip series. I

Scott Benner 26:10
Yeah, yeah,

Christian 26:25
yeah, so I guess I started with Omnipod, but I had the g7 so I wasn't in automated mode, and I had an ANC around seven. That way, this was, I would say, the three months post honeymoon before that, it was a lot better than that. And then changed jobs, new insurance, put an afford Omnipod, switched to the T slim. Sorry, tandem. I'm on the Moby. My last ANC was a 5.9 I think the next one will be lower, because I've had a lot more stability the last few months. This new endo that I went to was, like, the appointment before that, my endocrinologist was like, a seven is great, yeah, you're doing fine. I was like, No, I'm spiking to, like, 220 after every meal, 250 60, like, and he's like, No, you're fine. And I was like, Okay, I don't want to go that high. And I was like, What about like my basal? I feel like my basal might be too low. And he was like, No, it's fine. If you go any higher, you're gonna go low. I was like, Okay. And then this endo was like, Yeah, I think you could bump the basal by like 20%

Scott Benner 27:34
and I did that, and it made a big difference. I

Yeah, yeah,

yeah.

I did,

Christian 28:12
but I was too cautious about it. I would bump it up like point 05 at a time, and then leave that for a month or two,

Scott Benner 28:24
and I didn't want to

Unknown Speaker 28:28
do anything stupid.

Christian 28:36
Well, my endo a couple months ago, she was like, Yeah, you should bump this by like, point three. Like, that'll be fine. And I was like, really? She's like, Yeah, and she was right.

Scott Benner 28:52
I don't think it

Christian 28:53
was anything from there. I think it was just from when I was honeymooning and I was having those days, like I had a few days where I couldn't get my blood sugar above 80, where it was like I was just eating as much as I could, and just in the 60s, and I didn't want to experience that again. Kind of nervous about it.

Yeah, I mean, I feel like I should tell my sister, like, hey, just do a few things and you won't have to go to 300 and go to 50 and feel like crap. And she's like, Yeah, but it's okay, I don't care. Like, okay,

Scott Benner 29:34
yeah.

Yeah, I think for me, I don't know if

Christian 29:46
this is going to make sense. I, you know, I have a master's degree in engineering, and when people find out, like, Oh, you got to be so smart, and I'm like, No, I'm not. I'm not going to sit here and say that I'm an idiot, but I'm not that much smarter than the average person. I think that it's just I was willing to take the classes that sucked, and willing to put in the hours to study. And with diabetes, I feel like it's not the same, but it's similar. Where it's like, if you put in some effort, you'll get a lot of return. And I see my siblings putting in very little effort, it's like, just put in 20% effort and you'll get 80% of the results. I think that going through school, and, I mean, I played sports all growing up, and so that requires a lot of effort, in a sense, I think seeing the positive outcomes of not even necessarily, like working super hard. I'm not telling you to go spend 80 hours a week doing this or that, just I really believe in the 8020 rule that if you put in 20% of the effort, you'll get 80% of the results. And it hurts to See to not Care. I'm

Scott Benner 32:32
Yeah, I

Oh, yeah, we that's a lot of work.

Christian 34:18
Yeah, I in the beginning, I got in bad habits, so I don't know that it was necessarily a lack of understanding of the basics. But for example, a month into diagnosis, I could eat a brownie and barely see a rise, and

Scott Benner 34:52
then I couldn't

Christian 34:57
well no more, as in, when. I couldn't do that. I still had the habit of, like, just kind of snacking on certain foods that, like, I would end up getting that spike from.

Scott Benner 35:19
Yeah,

Christian 35:21
and I had some more, like, consider the impacts of fat and protein, because, again, it just like, I didn't really need to do many extended boluses early on. And now there are some foods that, like, you know, if I if I have pizza, if I don't do an extended Bolus, I'm gonna go low up front and treat that, and then I'm gonna go and hire later, you know, the whole thing. And it took me time to realize that, like, Oh, I do need to do all of these things. Yeah, yeah. And now, I mean, I was, I was talking with my wife a couple weeks ago, and, and I was like, diabetes for the first, like, a year, which, you know, it's only been six months since then, but the first year, it consumed so much in my brain. I was using so much effort just to try and have decent numbers. And now I don't even think about it more than, like 1520 minutes a day, I

Yeah. And I think the other big thing I was so scared to exercise that first year, because every time I tried, I would tank and I was like, Why do I want to go to the gym if I'm gonna end up sitting on the floor eating fruit snacks for half of it, you know.

And I decided a couple months ago to start training for triathlon for the first time, and I've been able to do it without a lot of low blood sugar, because I finally forced myself to learn my body's habits, or not habits, necessarily, but trends, you know, with with how different exercise at different times a day, and what different foods will do, and just learning that those patterns has made it so that I can work out, and then that, in turn, has made my blood sugar so much more stable.

Yeah, like, for example, in the morning when I'm more insulin resistant, like, I don't really need to worry about anything. I can just kind of work out and I'll be fine. But if I'm working out in the afternoon or evening, I'm gonna drop low if I don't eat something beforehand, that type of thing.

Scott Benner 38:01
Yeah, I guess,

Christian 38:03
not very funny story. I at a Costco chicken bake this one time. It's, you know, it's kind of, it's a lot of insulin, and went to play pickleball, like immediately after I finished eating, and didn't think about the fact that it was like a higher fat thing that I should have extended the Bolus on. And so about 10 minutes in, I get the 52 double arrow down, and then I tested because I almost fell over, and I was like, 27 and I was like, okay, yeah, that's why I don't feel super great. So I try not to have a ton of active insulin on board. But I

Scott Benner 38:57
it is very, very good. I,

Christian 39:14
yeah, not even thinking like I hit it hard, as if I wasn't going to do anything. I don't even know why I did that, because that was stupid, but yes, so from there I was, I've been a lot more careful about thinking about exercise when

Scott Benner 39:26
it comes to bolusing.

Christian 39:42
You You know, triathlon training takes a lot of time, so not a lot.

I like being busy. If I'm not busy, I'm bored, and it's not that I want to be too busy. I like having a few hours in the evening just to spend with with my wife, and I'm happy with that.

Scott Benner 40:19
Yeah,

Christian 40:27
I really like the short tubing. I had the tea slim for a little bit because I don't know if you know that tandem had the choice program at the end of last year. So if you bought the tea slim, then you could get the Moby for only a couple 100 bucks. So that's what I did. I bought the tea slim with the purpose of wanting to get the Moby for cheap. So I had the longer tubing for a while, and coming from omnipot, it was, like, it was, it was pretty annoying,

Scott Benner 40:53
yeah, yeah. And

Christian 40:55
like, I got used to it, and it wasn't that bad. But then coming to the Moby with the five inch tubing and the sleeve. It's not as convenient as Omnipod, I would say, but I don't notice it like Omnipod. So I really like that. And I love control, like you like, it took some time getting used to the algorithm, but there are times now where I can just be like, Yeah, that's a rise, but I the algorithm is going to take care of it. I don't need the balls here. Having An algorithm has made a massive difference.

Scott Benner 41:38
I yeah, I

Christian 42:29
It's funny. I've talked to her, to her about the algorithm, and she was like, Yeah, that's cool, but she was more interested in the Mobi because of the short tubing, not because she doesn't really care about control IQ. But my mom was like, That would be amazing for her. And my sister's like, yeah, she, uh, she plays tennis. She's like, I just take my pump off for tennis anyway, so I have it off like three hours. So like, that would make a difference there. Anyway.

Scott Benner 42:56
Yeah, yeah, she does. I

Christian 43:05
I'm hoping what it is is just her being 16, because I know when I was last couple years of high school, I didn't care what you told me if you were someone I didn't want to hear it from. I wasn't gonna do jack. I didn't I was very stubborn, and I have somewhat grown out of that,

Scott Benner 43:25
somewhat I'm no longer a jerk.

Yeah, I

Yeah, yeah,

yeah, yeah, exactly.

Christian 44:18
I think since my brother is an adult like he still lives at home, not doing a whole lot, like he has a job and stuff, but like he's not moving out or anything right now, I think that they don't. My parents don't want to try and parent their adult child like he's still

Scott Benner 44:33
15.

Christian 44:37
Yeah, yeah. But I think that they say, like, you know you're an adult, you're gonna do what you're gonna do what you're gonna do. We'll try to convince you,

Scott Benner 44:43
but we're not gonna try and force anything. And then my sister, I'm

Christian 44:46
not really sure. I think my mom does the best she can, but she can't force my sister to change her pump when it's out of insulin, or keep it on, or remember to charge it like I know. This summer, she went to a camp and forgot. Charger so her pump was about to die and She didn't have anything to charge it with.

Scott Benner 45:16
Yeah,

Christian 45:40
uh, so my mom was the one that told me about the podcast. She was like, you know, you could listen to this podcast. Like, it's really popular. I don't listen to it. I think they're a little crazy. But like, you know, it could help. And I was like, I'll try it out. You know, I got nothing to lose. I think that there are things that my mom doesn't know nearly as well as I do, but I'm not going to try and educate my mom, and I know that she knows more than enough to have a good a, 1c probably not anything in the fives, but between six and six five, yeah, for sure,

right? I think it's more that like my sister, she she does things that impede my mom's efforts. If that makes sense. I

I think the thing that she mentioned specifically was the high alarm at 120 she was like, I would be hearing alarms all day. Like, I'm not doing that. That's crazy. I

Scott Benner 47:54
My mom is 47 Yeah,

I was 22

Christian 48:16
you know, I went to BYU, and we were, me and my wife were at college when we got married, and I was I felt kind of old for getting married. I was like, dang, all my friends are already married. I gotta catch up.

Scott Benner 48:40
Yeah, yeah. I think, oh, sorry.

Christian 48:51
I think that my sister, like, I know she won't Pre Bolus. I've talked to, like, when I'm at their house for Thanksgiving or whatever, I'll be like, hey, Sophie, we're about to eat. Like, I'm, gonna Pre Bolus, or I don't say I would say I'm gonna Bolus. And she's like, we're not eating yet. Like, but if you give insulin right now, you won't spike as high, and then you might not Go low later. And she's like, Yeah, no.

Scott Benner 49:13
Like, yeah.

Christian 49:47
Yeah, I think the hard part is trying to fit it in when life is really hard crazy, like when I when my daughter was a newborn, I remember I Bolus for dinner. And then forgot that I had Bolus for dinner because of something she did. And then 45 minutes later, I was like, Oh crap,

Scott Benner 50:08
yeah, something like that, yeah.

Christian 50:17
You know, I love her so much, and it's hard,

Scott Benner 50:26
you know?

Christian 50:38
I mean, by the time my mom was my age, she had four kids.

Scott Benner 50:44
Yeah, me too.

Oh yeah, yeah,

Christian 50:54
we're we're thinking three, maybe four tops, seven is like, holy cow. How did you afford that? How did you keep your sanity? How did you ever have sex? I don't want to know that, but you know,

Scott Benner 51:11
how much like tuition? 2500 a semester. Yeah, no 5000 a year. Yeah, yeah, 5000

Christian 51:31
I think it's gone up. I think it's a little over 3000 a semester now. But if you're, if you're more, if you're not, then it's double that.

Yeah, yeah, we graduated with very, very little student debt. Yeah,

Scott Benner 51:53
yeah.

Yeah, yeah,

yeah, yeah,

engineering.

Christian 52:34
I'm currently working as a I'll call it a water resource engineer. It's not a traditional engineering role. I do a lot of non technical work, but I do some technical work as well. So it's technically an engineering job without a lot of

Scott Benner 52:50
engineering work. If that makes sense,

Christian 52:55
I'm very happy. Yeah. I mean, the benefits of the insurance is so much. I got a private offer the same time as this offer and the insurance, it's not even comparable how much better it is. I've saved probably at least $10,000 a year in prescriptions.

Scott Benner 53:21
Yeah,

Christian 53:25
I think whatever is going to happen is going to happen, and it's better to live a life with diabetes than to not live a life at all.

Scott Benner 53:38
A mission. Yeah, I did, yeah. I went to El Salvador,

Christian 53:45
lived in El Salvador, and taught people about our church

Scott Benner 53:48
and about Jesus. Missions are two years. No, she didn't go on one i No, this is before I met her.

Christian 54:06
We were meeting to getting married in about six months.

Scott Benner 54:13
Slow for my family. My parents were two months It's been 26 years now. And yeah,

Christian 54:37
you make references that I don't understand a lot. Yeah, I

Scott Benner 54:48
No,

exactly, yeah, I. Probably not.

Christian 55:03
I feel old because I don't know a lot of the new stuff that current high schoolers are doing, because I don't have anyone in that time of life, in my life right now, and so I'm old enough that I don't know that stuff, but young enough that I don't know the Old stuff. I

Scott Benner 55:49
I don't think so. Yeah, thanks. Applause.

Christian 56:06
I mainly listen for the stories at this point. I like the episodes with like Jenny and that type of stuff. My family doesn't talk about diabetes ever. My siblings don't want to talk about it. My parents don't really want to talk about it. And so even though I have a ton of type one in my life, most of my like sense of community, I guess you could Say, has come from listening to other people's

Scott Benner 56:42
stories. I

right, yeah, I like the mix, yeah, yeah, I think it's good. I

my wife's not pregnant right now. I I'm not sure when I got diagnosed. Yeah.

Christian 57:22
Uh, no, thank you not right now is chaotic enough. I

Scott Benner 57:51
Yeah,

yeah, thanks.

I'd like to thank ag one for sponsoring this episode and remind you that for a limited time, ag one is offering a Lulu Lemon exclusive everywhere belt bag and an ag one welcome kit with your first subscription while supplies last, of course, and with your Lulu Lemon membership, so make sure to check out my link drink ag one.com/juice, box to get this Lulu Lemon offer. And thanks to a couple of listeners who saw this offer for ag one and wrote to me and asked, How come you don't have this offer? This would make a great bag for my kids diabetes supplies, I reached out to AG one, and they extend the offer to Juicebox Podcast listeners drink ag one.com/juice, box. Limited time only.

Today's episode of The Juicebox Podcast is sponsored by the Dexcom g7 and the Dexcom g7 warms up in just 30 minutes. Check it out now at dexcom.com/juice, box. The conversation you just enjoyed was sponsored by Omnipod five. You want to get an Omnipod five? You can? You want to make me happy? Do it with my link. Omnipod.com/juice box, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bowl beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginnings series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698 in your podcast player, or you can go to Juicebox podcast.com and click on bowl beginnings in the menu. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? The episode you just heard was professionally edited by wrong way, recording, wrong way recording.com, you.

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#1450 Communication Breakdown

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 wherever they get audio.

At 56, Tanya, diabetic since age 4, overcame tech hack fears, embracing the Omnipod, tightening control and discovering personal growth.

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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 0:00
Hello, friends and welcome back to another episode of The Juicebox Podcast.

Tanya 0:14
Hello, my name is Tanya, and I live in the Columbus, Ohio area. I have been type one diabetic for 52 years, and I was diagnosed at age four.

Scott Benner 0:26
Please don't forget 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 or becoming bold with insulin. I know this is gonna sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle health.org, you know why they had to buy an ad. No one believes it's free. I'm having an on body vibe alert. This episode of The Juicebox Podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year. One CGM one year, not every 10 or 14 days ever since cgm.com/juicebox friends, touched by type one's walk is coming up quickly on March 8. That's a Saturday at Lake Eola Park in Orlando, Florida, go now to touched by type one to sign up and register. It's completely free. You're gonna have a wonderful time touched by type one.org Go to the Programs tab, click on Steps to a cure.

Tanya 2:12
Hello. My name is Tanya, and I live in the Columbus, Ohio area. I have been type one diabetic for 52 years, and I was diagnosed at age four,

Scott Benner 2:24
age four, so you're 56 now, correct. Gotcha, I'm gonna do your interview backwards from how I normally would. Do you mind? Do you listen to the show

Tanya 2:33
I do, and you can do it however you see fit? Scott, great.

Scott Benner 2:37
So I'm gonna start with now instead of back then. Okay, I want to know how you're managing today.

Tanya 2:44
That's a very good question, because the way that I manage today is so very different than how I first started out, obviously, 52 years ago, and even where I was 30 years ago. So today, I am completely 100% on board with state of the art technology. I've got a Dexcom g7 I've got an Omnipod five insulin pump. Keep in mind that these are all really new to me, I started on the Dexcom about three years ago. So I had had type one diabetes with no Dexcom, no constant glucose monitor ever whatsoever for the first 50 years. Three years ago, I started on the Dexcom, and I just went on the Omnipod five back on May 23 of this year. So it's only been a couple of months, five months, and sure wish I would have done it a heck of a lot sooner. Let me ask you first,

Scott Benner 3:51
after five decades of diabetes without technology like that, what made you get a CGM

Tanya 3:58
I was trying so very hard to control the diabetes on my own, which is the way I started off at age four, doing everything on my own. We didn't have a juice box, we didn't even have Juvenile Diabetes Research Foundation. We had nothing when I started out. So I was very used to doing it myself. I thought I was the only type one diabetic in the land. We had no social media, and I did not know anybody was not in my family. So I was all on my own. So my whole rest of my life, I'm professional. Went to college, used to doing things on my own. So I had the attitude, I can do this on my own. I don't need any tools. And then one day, about three years ago, my endocrinologist said to me, you work so hard at trying to keep your diabetes under control. She said, but you're really. Not doing a great job at it. She said, I think you need some tools in your toolbox. And I really respected this particular endocrinologist. Not all of them have I like, but this particular one really resonated to me. And I thought, you know, she's right. She's right. And on the outside of my file I had looked when she stepped out of the room and it said out of control, diabetic, and that killed me, because I didn't feel like I deserve to have that title, because I had always worked so hard to try to be in control. But it wasn't, and it was a seven, 7.1 7.2 a 1c, and that honestly was as good as I could get it, not having any tools. So being on tools, this is now a couple months of being on the Omnipod, I now have a 6.1 A, 1c, okay,

Scott Benner 5:56
hold on a second. I want to take you back to the doctor's office. You're killing yourself, trying to do this for years, forget years, decades, and to find out that that's how they think of you really take me into that for a second. How does that make you feel, to learn that all this effort has been put out over all these decades, and you are, what was the quote? Well, out

Tanya 6:15
of control. Diabetic was literally written on my file, and that stabbed like a knife that was excruciatingly painful, because I'm a control freak. I don't do drugs, I don't drink. I try to get exercise. I try to do everything the right way. Try to be a good friend, try to be a good mom, try to be a good wife. Everything I try to do, I try to do well, and I felt like, wow, the one thing that I can do for myself that I've been doing for 50 years, at that point, it was seen as a failure. What

Scott Benner 6:54
did you think your outcomes were? Did you feel successful, or did you feel out of control? I

Tanya 6:59
didn't feel like a huge success, but I was one of those people that I'm a control freak, and I really, really, really had concerns about the Omnipod getting hacked into, whether that be China or somebody else. I worried about things that were never going to happen that prevented me from being able to move forward with any technology. And then one day in that office, I said, That's it. That's it. I'm done. I'm done. Went home, called my mom, who's always been so instrumental in my life, and I told her, I said, today's the day. She said, for what I said, I'm getting on board with the Omnipod. I called Omnipod that day. Doctor put in the prescription. As soon as it came in. We started right away on it. It was just making the decision, after 50 years, that this isn't working anymore. So I guess that would be my advice to people that have, you know, dinosaurs like me, that you know you can change. You should change, at least try it. I had a real good friend of mine, a best friend down in Miami, who got diagnosed at type one at age 50, and she said, you know, you can throw the thing off. She said, pull it off your skin. Throw it in the trash if you want, but at least give it a try. It might make your life so much easier, right? And that was the deciding factor.

Scott Benner 8:29
Tanya, I have so many questions. You're open to talking about this. I imagine I

Tanya 8:33
am completely open. Scott, okay,

Scott Benner 8:37
what in the I don't I don't want to be pejorative. I was gonna say, What in the world. But tell me why you would think your insulin pump could be hacked by a rogue state. Like, like, I really want you to think about that. Someone's sitting in China and they think, let's get Tanya. This episode of The Juicebox Podcast is sponsored by ever since 365 and just as the name says, it lasts for a full year, imagine for a second a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off? That may seem too good to be true, but I'm not even done telling you about it. Yet. The Eversense 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste the sensor or go through another warm up period. The app works with iOS and Android, even Apple Watch. You can manage your diabetes instead of your CGM with the Eversense 365 learn more and get started today at Eversense cgm.com/ Juice, juice box. One year, one CGM.

Tanya 10:06
I know it sounds goofy, it's it's embarrassing to even admit it right now, but I really did. I really had fears that if somebody wanted to do something bad, oh, this is just fabulous. So the first time in my life I'm not in control of my diabetes. I go to sleep, and somebody could not that they would, but they could potentially hack into that Omnipod. They were stupid fears. They were unfounded fears. But perception is reality. Yeah, so that was a perceived fear of mine to the point where I said, No, not doing it, not doing it.

Scott Benner 10:45
It's awesome. I just, I'm so like, I mean, you know, so it's not, it's just one of those things that, like, I don't know in my wildest dreams. I mean, I understand that when every, every time something new comes out, I think it's important to realize that there's industries involved on every side of everything new. Everyone's trying to make money off of something, right? So you can get somebody that'll fear monger anything because it makes something for them. So, you know, oh, insulin pumps are connected to they have Bluetooth now. Well, you know what? They're gonna get hacked. How'd you like to walk through a airport one day and have somebody kill you with your insulin pump remotely, just, I don't know. Have you ever heard of anything like that happening? Ever? No,

Tanya 11:26
no, not, ever. And the chance of me killing myself by not being in better control was more of a reality than worried about somebody hacking the Omnipod. So it's stupid. It was stupid. And that day, I said, That's it. We're done, done. Yeah? Not doing this anymore.

Scott Benner 11:45
Yeah. I mean, I just, I'm having such a wonderful, warm moment imagining Shi Zhen just sitting around going, I'm gonna get Tanya in Ohio today. We're gonna give her a big Bolus. It's gonna be awesome. What do you see? That's how we're bringing down America one tiny at a time, exactly. Listen, I know it's not. There are people listening like, you know it could happen? Like, okay, like, I'm sure someone could hack into your technology and do all of that. I guess what I'm doing is, I'm juxtaposing that against the actual harm you were doing to yourself with the way you were caring for yourself, versus the the unreal idea that this could would end up happening to you 100% Yeah. And so, like, 50 years into it, can you tell me average? What have your a one CS been like? Because, I mean, a 1c is all they measured with in the beginning. So, like, Where were you with that

Tanya 12:36
early on starting out, I remember seeing a endocrinologist when I was probably 16, 1718, and the A 1c was a 12.1 and the endocrinologist told me was a woman, and she said, you're going to go blind with this. And I remember being furious at her, what do you know? What do you know? You don't live in my world. What do you know? Because I thought I could control everything. Really, I could control very little, and

Scott Benner 13:05
you had no information about what you were doing either, right? No. And

Tanya 13:09
at that age, we were told early on, when I was four, my mom told me that the attitude was, run a little sweeter. That's what they would call it, run a little sweeter. That's better than having lower blood sugar run it a little sweeter. That was in Cleveland, and then I we moved down to Naples Florida. The Naples Florida. You know, people criticize Naples for its lack of schools might not be as good, and medical facilities not as good, but Naples was actually the place that said, No, I think she needs to be on two shots a day, because Cleveland, when I started off, said the endocrinologist, there one shot a day should be fine. It was not fine. It was horrible. I remember not feeling well and being crabby a lot, but not realizing that that was due to the blood sugar, because nobody ever tied that together.

Scott Benner 14:02
Yeah. And I wonder, too, how many of your decisions moving forward, as you got older are impacted by high blood sugars to begin with? Like, even like, that idea of like, they're coming for me. Or, you know, I can do this myself, or just being defiant in general, higher blood sugars make people cloudy, right? And they change who you are. Like, that's a real concern. Like, it turns out, like you're your own personal Xi Jinping, like you were, you were, oh, absolutely, and not on purpose. Let's be honest, right? Like you're doing what you're told. Like Cleveland tells you one shot a day, let's run a little sweeter. And then the next person says, No, let's do two a day. I'm looking at 12, A, one, CS here, a little more. Insulin is not going to make this kid low all the time. But then that becomes the expectation, right, right? And then when the times change, do you not go along with it, like the like, because what's the first I mean, 50 years ago, are you beef and pork in the beginning? We. Sure were right, right? So like, then they moved to, I don't know, you know, what happens next, cloudy, and what was your next step? Honestly,

Tanya 15:08
there have been so many Scott, I can't even remember all of them in order, but we had NPH, you know, we moved on to traceba. We've been through them all.

Scott Benner 15:18
So you've done mph, regular beef, pork, you've done human log and whatlantis You've, yes, yeah, you've probably, and now, and look at you with Tracey, but now ended into that. And so you're making all these steps through here. Why do you never make a leap like, I don't mean you. I don't mean why. I want to be clear. I'm not saying, Why didn't you? I'm saying, What do you think about your care and the way it was set up stopped you from leaping forward? Like, how come you didn't go from like a five speed to an electric car? You know what I mean? Like, how come you went from a five speed to an automatic to Oh, I got air conditioning now. Oh, now I have power steering, anti lock brakes are coming. Like, how come you never leapt forward.

Tanya 16:01
Well, I think I know what happened there. When I was 18, I left home, went down to Miami, Florida, went to college. I was a resident assistant an RA there. I had a lot of responsibility. I was dealing with my diabetes the best I could but in those days and ages, I didn't have to worry. Keep in mind, I didn't have to worry about lows. Yeah, I had to worry about highs, but I didn't have to worry about lows. I in my entire 52 years, I have never been hospitalized. I've never been taken in an ambulance to the hospital for low or high blood sugar, nothing, nothing, nothing. I felt pretty good. So why would I change what I thought was wasn't broken, okay? You know. So I kept on with that, and then I got married, graduated from college. Everything went fine there. Got married, had two kids, and that was when everything came to a screeching halt with my care, because now it was no longer just me. I was bringing kids into the world. So that was when the blood sugar, the A one CS, went from like a eight and nine down to a six point. But remember, I had no insulin pump. I had no Dexcom, so it was constant. Finger pricks all day, all night long to keep those babies safe. How

Scott Benner 17:25
old were you when you got pregnant the first time?

Tanya 17:27
I was 33 and 36 for the second one.

Scott Benner 17:31
Okay, wow, that's older. Yeah, it was definitely, I'm just gonna say for back then, but I do, I guess that is what I mean. Like, how old are your kids now? 21 and 23 Oh, my isn't that interesting? Yeah, 21 and 23 I have an older kid than you really. Yeah, my son's gonna be 25 in February. Okay, I'm just saying because you're, you know, you're four, four years older than me, maybe five years older than me. And I had kids pretty young. So my point here is I almost just, like, gasped a second ago, because I'm accustomed to 27 year olds telling me, oh, I kind of pulled it my head out of my ass when I decided to get married or had kids or something like that, or even people in their mid 30s who look backwards, a person in their mid 50s, you said the same exact thing everybody else says, I realized, like, I had to take better care of myself because I had kids. It happens to everyone over and over and over again. What that means is, is that your explanation of I thought I was doing okay? It's not completely accurate. You knew how things were going, but you didn't have an outside force to push you to really decide to figure it out and change it. Is that fair?

Tanya 18:42
That's fair. And I also used a tool called an an autojector by Owen Mumford, if you've ever heard of that, and that would deliver insulin. I would fill my syringe, put it right up to my jeans, then worry about alcohol, nothing. And I would just do my shot. I would do like, 6789, shots a day from the moment I was pregnant, so called at age 30 till this day. That's how I operated. It was the Owen mom for auto ejector, basically MDI, the entire duration, until the pump, which was just this may 23

Scott Benner 19:20
you're saying that just having an auto injector that helped you to do more frequent in like, not having to draw something up, made it easier for you. 100% okay, all right. 100% Yeah, I had never heard the name Owen Mumford along with it. I thought you were gonna tell me something about Mumford and Sons for a second. I was like, This is gonna be weird. But okay, so just having an auto injector, so not having to pull out a needle and a vial and drawing it up made it easier for you, plus, at that point, I'm guessing you're on faster acting insulin at that point as well,

Tanya 19:55
correct, but I did have to use the insulin string I remember being at work. Corporation, where wouldn't it look real good to be pulling out my syringe and stuff in a sales environment? So I would do it like down, kind of down by my desk. I got real good at it, and I would pull the syringe out. I'd fill it with my hum log, and then just put that auto check there. I would take that filled auto checker in my purse to a lunch appointment, already pre filled from the office, from under my desk, and I would go to that lunch meeting. Client never knew. I'd pull out that auto check or put it up next to my leg, my you know, whatever, hip, whatever, and I would hit the button and it would deliver the insulin. And that was at least how I was able to stay around a seven point A, 1c not being on an omni pump and not having a Dexcom. And

Scott Benner 20:51
prior to this auto injector, you would not have gotten up to excuse yourself to and did you even carry your insulin with you?

Tanya 20:57
I did carry my insulin with me in my purse. I was one of those people that you did not need to know. My business. This is my business. I didn't want anybody's sympathy. Yeah, and I'm still a lot like that. I still don't freely talk about it. I could probably help a whole lot of people if I could be a lot more open about it, but my attitude is, I don't want your sympathy, so if I don't tell you, I don't get your sympathy, which is good. So

Scott Benner 21:26
to avoid that, I don't know if we have time to dig into Tanya, why you won't accept empathy from other people, but like avoiding telling them was doing you harm, that was still an acceptable trade off, absolutely. Do you know why

Tanya 21:41
I just think that I don't want anybody. I've got a great life, Scott. I've got a great husband, great parents, great brother, great kids, everything. I've got a great business. I own my own business, successful business. I had a great college. I have great friends. Everything is great. But

Scott Benner 22:05
how does any of that stop if a business associate knows that you have diabetes? Because

Tanya 22:10
I always felt like especially when I worked with hotels, and it wasn't them doing it, it was just my perception, again, as reality is that if somebody knew that I was dealing with this, oh, they probably wouldn't want me to have to work the New Year's Eve event. Oh, they probably won't want me to have to work the Sunday brunch running around for Easter brunch, and so then they won't ask me to be a part of the team. And that would have crushed

Scott Benner 22:39
me. Yeah, you thought you would have got eliminated from their thinking, yeah. They thought I did

Tanya 22:43
not want to be eliminated. I wanted to do everything they had to do. Never wanted to be treated differently. But

Scott Benner 22:50
now that they know, has any of that happened? Well, they don't all know. Okay, even with the wearing a pump. Oh yeah, no, because I guess Omnipod allows you to hide it pretty well, still correct,

Tanya 23:02
and I wear it on my abdomen so nobody needs to know. Okay, the only people that know are the very few people I can probably count on one hand. Seriously, yeah, that know after 52 years, listen,

Scott Benner 23:16
I could sit here and make either argument for you, like tell people it'll surround yourself with people who understand and care about you and blah, blah, blah, and it'll be very good for you. Mental health wise and physical health wise. I believe that I can make that argument. I could talk about it for an hour. I could also tell you that a lot of people are assholes, and it's possible that them knowing about your diabetes is going to impact your life poorly. I could make that

Tanya 23:39
any changes at this point. That's exactly right. It's the risk of that. So in

Scott Benner 23:44
your mind, you're trading some a 1c points, which probably don't seem terrible to you at an eight because you've seen them at a 12, so an eight still way better than 12 Correct. All right. So you're like, look, I can maybe get a seven, but what if I lose this contract? Then where am i right? Like, or like, you know what, if I can't do this work anymore, then, then I don't have a job? I so I see the fear 100% Yeah. Now, do you think if you were diagnosed 10 years ago, you would have felt that way? Oh, no,

Tanya 24:12
I don't think I would have felt that way. I would like to believe that I would have, early on, said, Oh my gosh. You know why would I do with MDI? That makes no sense at all. Just get on the Dexcom and get on the Omnipod. I remember Scott going to a meeting probably close to 20 years ago in Columbus, Ohio, at a hotel property, and they were talking about CGM it was diabetes outreach board, and they would talk about these things called CGM that were coming, and that you would hold it in your hand, and it would tell you what your blood glucose score was. I was so mad when I left that meeting, because I thought, What a cruel thing to. Tell a bunch of type one diabetics that this crazy tool is going to be out in the next 1020 years. Whatever it is that they were working on this. This is, this is a joke. This is not going to happen. Oh,

Scott Benner 25:13
you thought it just couldn't possibly happen, that they would be able to possibly. Isn't that funny? Yeah. Do you think that's just a function of your like when you grew up, your age, like your understanding of technology under

Tanya 25:26
and we had no technology. Keep in mind, to test our blood sugar, we didn't even have a glucometer. Then we would take drops of urine in a test tube, add water and a pill, and if you were feeling optimistic that day, I told my mom, no, ma, no. Ma, that's not Orange. Orange was bad. No, that's that's not orange. That's closer to blue. That's closer to blue. No tea. It's closer No Mom, that's closer to blue. It's because you wanted, you didn't want to think that you were out of control. But I was clearly out of control, despite all the efforts my mom made to try to keep me in control, talk

Scott Benner 26:06
about the juxtaposition between the outcome and the effort. I don't want to put a word in your mouth, but what's the feeling you get from putting that much effort into something and seeing it not work out over and over again, frustration,

Tanya 26:17
I don't want to say hopelessness, because that's not who I am. I'm a very optimistic person. I thought I was doing okay enough that I didn't have any bad consequences. The only bad consequences I had after age four to basically 19, not taking good care of myself when I left home, you know, having pizzas late at night, not doing insulin for it, I was the worst. I had retinopathy, diabetic retinopathy at age 21 as soon as I graduated from college, I was at my new job. I had to start diabetic retinopathy laser treatments at that time, and I went through that for about 18 months. That was when I made my 180 degree turn around. That's when you started me. Was life changing. Okay?

Scott Benner 27:09
So getting the the laser treatments in your eyes took you from 12, A, 1c to where, like more, like in the eights, yes, an eight. Okay, yep. And then it's not till you get pregnant that you hit the sixes

Tanya 27:21
Correct? Which would have been around age 30. Yeah, it's still

Scott Benner 27:24
another 10. It's still another 10 years or more after those, I guess the lasers in the eyes. If that doesn't get your attention, I'm not sure. Seriously,

Tanya 27:31
I no longer invincible. Yes, it can even get to me. Was my thinking at that point? I'm like, okay, okay, I get it. I get it. But isn't

Scott Benner 27:39
it super interesting that you think you're invincible in the face of things that you have no control over, right? If you have these outcomes with your diabetes, these things are going to happen to you. But you're like, No, they won't. They're not going to happen. But in that same mind, says, but what if another country decides to attack my technology, absolutely how come you didn't feel invincible? There lunacy.

Tanya 28:05
I mean, it makes absolutely no sense whatsoever, and I can laugh about it now, but I really remember feeling that way. Let

Scott Benner 28:15
me tell you, Tanya, I think if you and I have this conversation while you feel that way, you're like, listen to me, buddy. I'm telling you right now, they're coming for us, and they're going to get us through our insulin pumps

Tanya 28:25
Exactly. They're going to just real quick at a time, just real

Scott Benner 28:28
quickly. You don't think Jews control the weather, right? I honestly don't

Tanya 28:32
know what to think anymore. Scott, my whole perception of reality is just changed so much. You know, like in my own world, it's like, I trying to figure everything out. It's challenging. So

Scott Benner 28:49
it's a lifetime of a way of thinking, and it actually bleeds into how you thought about your health 100% it's interesting. So you were raised by parents who were, like, very conservative, like, scared of things, like that kind of stuff.

Tanya 29:06
Yeah, so I think that's a fair statement. Okay, you know, don't trust, trust, but verify. Very loving parents. My mom was my rock from the time I got type one diabetes. Love my father to death. He loves me immensely, but he could not deal with the diabetes. So my mom did everything on her own. Right.

Scott Benner 29:30
Is it fair to say that, like, culturally, very insulated anybody that's not us, is scary, that kind of thing? Yeah, yeah. That's absolutely fair statement, and then it trickled into your diabetes somehow. Yeah, boy, that's interesting and very honest of you to share. I appreciate that. Thank you. Absolutely. The show is very non political and stuff like that, so I don't really get into it that much, but I'm talking to you now. You're an adult, you're a sensible person, and to say that like there have been. Things that have been said so many times to me, I can't tell what's right and what's wrong, because I'm assuming what you're telling me is that I've been told over and over again about how to be afraid, and at the same time, my common sense is telling me that is like not the case, but I can't reconcile the two things correct? Yeah, boy, isn't that interesting,

Tanya 30:23
correct? And then you I got to a point where I said, You know what, this clearly isn't working. And I was really seeing the black and white on the medical file that said out of control, diabetic. And boy was I mad. I was so mad, Scott, to be honest with you, that day I went home, I was furious. I was crying. And I'm not a overly emotional person. Usually I just, you know, okay, whatever, I had called the nurse at the office that day and said, You know, I don't really appreciate that you guys wrote out of control diabetic on my folder. You clearly have no idea how hard I work to try to stay in control with no tools. And that was like part of the Wow. Why am I doing this? Yeah,

Scott Benner 31:08
the beginning of you sticking up for yourself. Oh, absolutely right, right. Okay, hey, listen, I'm going to get past this part, but I just want to tell you that I know that Jewish people don't control the weather, because I believe it wouldn't be humid in Florida if they did. So that's all I'm saying. I think, right, it's a fair statement. Now. Statement, yeah, moving forward, you're now completely frustrated. You're gonna fight more, but you're not fighting for yourself as much as you're fighting against them. Does that make sense to you? In retrospect, like you were pissed about what they thought of you, not I want to do better. For like you didn't say, I don't want to be out of control. You were like, Screw those people, like they're not right about me.

Tanya 31:50
Absolutely they don't know how hard I'm trying. But instead of saying, okay, the way it looks on the outside, look at the A, 1c look at how hard you're trying to stay in control. I had an endocrinologist that called me one time. He said he called me at home at night. He said, Listen, I'm worried about you. He said, The lows that you're getting at night? He said, You know that could kill you. He said, I'm worried about you.

Scott Benner 32:17
How low were you? It would be like 4545

Tanya 32:21
blood sugar, and my I'd be talking to you the way I'm talking to you right now. That's a 45 blood sugar for me,

Scott Benner 32:28
you would know the difference, not really. No. Okay, so what were you testing at that point you knew you were 45 Yes. Okay. Did you feel low at all? Sometimes,

Tanya 32:38
there for a while, I would feel the lows. But what's interesting is, when I went on the Omnipod and I went on the Dexcom, and everything is completely so much better now the A, 1c, 6.1 everything makes sense. But I don't really notice the blood sugars being low anymore. So I'm not really quite sure what to think there, but it's okay, because I have a Dexcom. Okay?

Scott Benner 33:08
I want to get to one point, so I'm going to kind of take you back into your 30s when you're having babies. Sure. Does the doctor say to you you can't have kids at this a 1c if you're planning on getting pregnant lowered, or were you pregnant? And they said, Oh, you're gonna have trouble if you don't bring down your A, 1c, yes,

Tanya 33:25
I saw a wonderful doctor in Columbus, very well known diabetic Doctor maternal medicine, and he explained it loud and clear, and we got along wonderfully. He's still a good friend to me to this day and age, I reach out to him periodically, and he said, you know, you've got it. Get this a 1c, he said, down. He said, We got to keep it down at like a six. And so I immediately, immediately, when I found out I was pregnant, immediately went down, took that thing down to a six, because it was so not about me anymore. It was my concern of hurting them, not that I necessarily didn't want to be here to help my kids grow up, but my main concern was giving them heart damage, or, you know, doing something that could hurt them. Yeah,

Scott Benner 34:17
so how did you accomplish that? How did you just say, oh, okay, I'll drop my a, one c2, points. Like, what did you do to physically accomplish that?

Tanya 34:25
Constantly check the blood sugar like 12 times a day, literally, with the little pin prick on the finger and my little glucometer. And every time it would go to a certain number, it would be like a 140 boom. Do a shot. Boom, do a shot with my auto checker. Because the auto checker enabled me to be able to do that, and I was working full time at the time. It was it was a busy life, but it was a good life. It was a good life. I didn't mind doing what I needed to do to try to give them every opportunity to be healthy. Feet. Yeah,

Scott Benner 35:00
you're avoiding a lot by having a lower a, 1c during pregnancy, like birth defects, hypoglycemia after birth of the baby, pre term, like, you know, birth getting, you know, having a an early delivery, still birth, jaundice, like a lot of things, fetal birth, weight. I've even heard people talk about the babies can have a higher likelihood of like, type two diabetes as adults. But did that effort teach you, oh, I don't have enough insulin during the day? Yes. Okay, yes. So you left the pregnancy with that knowledge. Did you keep doing it after that, or did you go, well, there's no baby in there now, so don't worry about it anymore. No,

Tanya 35:41
I did, because I needed to be alive for them. And, you know, and then two years later, my son was born, and so I it by then it was okay. Nine months doing it for my son, and then my daughter was born. After that, keep doing it, and then, you know, I would get involved with JDRF, and heard more about the importance of staying in tight control. And so it was really age 30 when everything changed. That was my 180 degree turnaround, even in the 20s, also after the retinopathy. But really it was the pregnancies that kick things into the six point, a, 1c,

Scott Benner 36:22
and hearing from people like, see, it's interesting. You said something that somebody just said to me two weeks ago, a gentleman who's 76 years old and has had diabetes for five decades before JDRF, the library is the only place I could get information about diabetes. And then JDRF came and they started handing out pamphlets and saying things over and over again, and you just said until somebody started saying over and over, keep a tighter control. It really is that simple. I think just repeating simple ideas to people until they hear them, and then it's not so much that you learn you need it. It's almost like it just becomes reality, like it's just the thing you understand. You don't have to think about it any longer. If I use more insulin, matching with my higher blood sugars, it'll keep my blood sugars down. I'll have a lower a, 1c I'll have better health, etc, and so on. It is just that. It's just getting good information from somebody 100% Yeah,

Tanya 37:21
about that, and the omnipot. I mean, that's just, you know, now I'll, I'll go to bed, and if it's 141 I'll hit the auto correction, and maybe we need a little bit there, and then it'll give me, you know, point 1.2, whatever it gives me. And then I'll go to sleep, and I'll wake up and it'll be a beautiful 90 every morning. Yeah, so it's completely different now than it was earlier in life. Thank God. Yeah,

Scott Benner 37:49
no kidding. You don't have any trouble managing the technology because you were kind of a Luddite for a while, like you weren't using any technology at all. You didn't have any trouble learning it and adapting yourself to it. Not

Tanya 37:59
really the only challenge, I would say, and I probably need to reach back out to the nurse educator, is to try to figure out, like, it's always 4am 4am that's when it'll hit, like 140 and so a lot of times, still, at 4am I wake you know, it wakes me up the Dexcom, and I'll do that auto correction, and that little auto correction will give its little magical, mystical amount, which will take it back down. So I wake up and it's 90. So something happens that little I can't remember what they call that period of the morning, but something happens to me at 4am so I'd like to figure out now that's the next step. Here is what is that? Why is it happening? And what do I need to do? Do I need to go in manual mode? Do I need to go in some different mode through the night to try to beat that? What's

Scott Benner 38:50
your target set at Nami, pod five. It's the lowest one. It is the lowest. Okay. One, yeah, okay, yes, 10, 112, something like that in there. Yeah. I think it's 110, 110, so you're at your lowest target, but you rise probably from like three to four. At four, you're hitting this 140 you get woken up by your alarm, and then there's an amount that the Omnipod five is like suggesting, but not bolusing. Is that right? Correct? Yeah, yeah. And you put that and then

Tanya 39:19
I'll Bolus it based on its amount, and it's right every time, every time, 100% I do what it says. I hit the Bolus button, I wake up. It's 90 that next morning. Now,

Scott Benner 39:31
your level of effort today, as a person with type one versus your level of effort the years prior to you getting a CGM, are you working harder now or less hard? No, no, that's

Tanya 39:42
the pathetic part. Scott. I am definitely not working harder. I am working smarter. No, I put so much effort in before, but it didn't show

Scott Benner 39:52
yeah, then the frustration comes from that. Yes, how about like, your mental space? Like, how much do. Are you paying attention to diabetes now? Versus before? I pay

Tanya 40:03
attention to it quite a bit. I mean, I've been very fortunate. The retinopathy was the only complication I had, and that was when I was 21 and 22 years old that's now, uh, completely quiescent. There's nothing happening there. I see the retinal doctor every year, podiatrist, no issues with neuropathy, nothing, nothing, nothing. So I've been very blessed to have been out of control for all those years that it didn't hit me a lot harder than it did. And I am grateful, I'm appreciative, I'm grateful, but I'm not going to stop the care at this point.

Scott Benner 40:43
Yeah, no kidding. Are the gaps of time in between when you touch diabetes during the day? Are they bigger? Or are you just programmed at this point to keep looking?

Tanya 40:52
I'm pretty programmed, just out of curiosity, like it'll be like, I work from home. I negotiate contracts between companies and hotels, so I've got a home office, and I will look at the phone every now and then, just like, wow, the Dexcom has been so quiet. Let me make sure, because remember, I'm one of those people that has to trust but verify. So I have to make sure, is the Dexcom working, you know, is it working? And I'll pick up the phone, it'll be like 114 right now, 114 blood sugar. So it's all good. So there's a lot less dealing with diabetes these days than even a couple months ago, before the CGM and the Omnipod. No question, I'm going to ask

Scott Benner 41:36
a personal question. Yeah, menopause.

Tanya 41:40
I had that about four years ago. So through that, through that,

Scott Benner 41:44
okay? And did diabetes get easier after menopause ended?

Tanya 41:48
You know, I never really noticed. I didn't have any big deal. It was no big deal. I was like, wow, yeah, it's been a while. Okay? I guess I was lucky in that way where it never really affected me for the better or for the worse, to be honest. Okay,

Scott Benner 42:03
okay. Do you have other autoimmune issues besides type one? I do not. I thought you were gonna say no no, and I have no reason to think this, but I thought you were gonna say no because even with your poor control for those decades, you don't seem to have any complications at the moment. And then my follow up question to that was going to be, do you see a cardiologist? Is somebody mapping your cardiovascular system to make sure that you're not having problems that you're not aware of yet? No,

Tanya 42:31
and I have wondered about that for years, but I have the mentality where, if the endocrinologist thinks that there's a reason why I should see a cardiologist. She'll tell me, so I'm not going to ask her, do you think I should see a cardiologist? I'm going to let her tell me, and if she says that, then I'll go see one. But until she says that, hey, probably not going to do that, because I don't want to look for

Scott Benner 42:57
trouble. Well, that's not how that works. Tanya, though

Tanya 43:01
I know that is the truth, though, Scott, that's how I feel. But no, I have not. I've seen a foot doctor. I've seen everybody else, but have not seen a cardiologist. Well,

Scott Benner 43:12
I would tell you that with high a one CS for that long, I would want somebody to look and just make sure I don't have blockages somewhere that just haven't caused me an emergent situation there. That's all because higher blood sugars, you know, causing those little holes to rub in arteries and veins and whatnot, and then they patch back over and they get thinner and thinner. Like, wouldn't it be great to see the wouldn't great? I honestly think this would be great. Wouldn't it be great to go to a cardiologist and have them tell you, hey, you've got like, a 30% blockage here, or, you know, I see an 80% here. Let's just, we'll just clean those out real quick for you.

Tanya 43:47
Yeah, no, you're right. And you know, Scott, in all honesty, it is your show Juicebox. The first time that I heard about the blood vessels and blah blah, blah with diabetes. It was on your show, where you actually explained about the blood sugar rubbing against the arteries and the, you know, the scar tissue, and that I had never heard that before, and that was about a month ago I heard that,

Scott Benner 44:12
yeah. How did you find the podcast? I was

Tanya 44:15
reading a book, and I can't honestly remember the name of the book, and they had mentioned and other sources, if it was

Scott Benner 44:24
in a book, it was, think, like a pancreas. I think that's the only book anybody's right.

Tanya 44:28
Yeah, I think you're right. And also one of my doctors had told me, Hey, you should turn on Juicebox, and I was not aware of who you were, but boy, I wish I had had found you a lot earlier in life. I

Scott Benner 44:41
don't want to scare you, Tanya, but I'm using your podcast app to take control of your phone.

Tanya 44:51
Oh, that's all right. It's time. It's good. You know, when people

Scott Benner 44:53
say I can't believe it, there was an episode about this topic, and I was just thinking about it. It's because I can listen to you through your podcast. Yes, that, no, I'm just teasing

Tanya 45:02
through the Alexa through the phone, right, all the sources. But I think it's

Scott Benner 45:06
interesting when people your age find like, podcasting or like, you know what I mean, like, you ever have like, a 70 year old tell you, like, I saw this on YouTube, and you're like, Get out of here. Really, did you absolutely, yeah, it's awesome. But okay, so a doctor told you about it and you saw it in Gary's book. And I want to say, I don't know Gary, I think I've spoken to him once in my whole life, but I'm assuming Jenny's the reason that my that my podcast, is in Gary's book. So like, you know Jenny works for Gary. So, yes, yes. I mean, it's incredibly interesting that you could live five decades into your 50s, and a doctor has never said to you, hey, you know what? Tanya, you've had a one CS from 12 to eight for decades at a time. Why don't we just, you know, inject a little die in there. Look around, make sure that all your, you know, all your arteries and thoroughfares are nice and clear. You know, now you've heard it explained, but if you drop over dead 10 years from now from a heart attack, that's going to be a heart attack. They're going to say it's a complication of type one diabetes, and they're probably going to be, right, you know, like, so I say stay ahead. You work this hard to stay to get here. You know what? I mean, like, I turned some of that, like, obstinance onto, like, staying ahead of problems, because now you're, I mean, you're doing terrific now, yeah, no, that's, that's a fair statement. That's a good point. What's your a 1c now, uh, 6.1 good for you. Let's see, I have to get it like Arden, though, Scott. Oh, well, listen, Arden's in college right now, so Arden, you're doing better than Arden right now. It's funny, because that's even another thing it gets made a big deal of, sometimes by people like, they're like, oh, you know, Scott pushes that his daughter's a 1c is lower, and people don't understand how this works. Like, one time I did a talk somewhere, and they asked you, like, we have to introduce you. How do you want to be introduced? You know, like, what are we going to say to get people interested into coming into this room? And I used to say, like, just tell them. I'm going to explain how insulin works. And I had a person tell me, like, that is not interesting. No one's gonna care about that. And, like, they don't know why they care about the timing of insulin. So telling them that's not gonna bring them in. And I said, Oh, well, just tell them. I mean, oh, you know, I said, One day, I said, Well, my daughter's a 1c is between five two and six two for, like, you know, however many years it was at that time, and she doesn't have a, you know, a prescribed eating style. Like, it's not, like, She's not eating a specific way to get that right. Maybe that'll, like, get people's attention. And, you know, like, I don't care if you're I don't, like, I don't honestly care what people's a one Cs are, like, I want your time and range to be tight. You know, you're going to start hearing in the next year, I think Tanya, big entities like Ada and JDRF start talking about total time in tight range. Now they've got people thinking 70 to 180 which, by the way, in fairness, I was saying a long time before they were but that's fair. And now I think they're going to start talking about 70 to 140 because of what we spoke about earlier. They are trying to get these messages into people's minds so that it's just what they come to expect. Because I think they realized that when they told people diabetes, oh, you know, nothing you can do about it, right? Is what it is, that's what people thought. It is, what it is. There's nothing we can do about it. Then they told them, hey, listen, keep it between 70 and 180 and people are like, All right, I'll shoot for that. And now they're going to tell them 70 and 140 and try to get them because they have all these other tools to shoot for that. I think that's awesome. But I also think, if you're a one CS, you know, I don't know what my I honestly don't even know what Arden says right now. Like, so she's in college. She just switched universities. It was not easy. She's in her first couple of months at this new place, and she's now refiguring out the food and how to Bolus for it and her activity levels. I wouldn't be surprised if Arden's a one sees like six seven right now, like, you know what I mean, but she's also a 20 year old kid with a six seven, A, 1c, who I've only seen fight off a couple of lows in the last two months. Awesome. You know, absolutely 100% absolutely awesome. So a lot is about where you are in your life as well. The problem becomes, is that if you start talking about it like, oh, it just happens to you, then people end up with, Oh, I've got a 250 blood sugar. I was 300 after I ate it. Just, there's nothing I can do about it, like I just talk about it the way I talk about it, to give people the expectation that says, You know what, I think you can do this. Like, you know what I mean? Like, I think you could get a six, A, 1c, if you just understood how insulin worked a little better, put it in at the right times. You know, didn't over treat lows, didn't over treat highs. That kind of like those small, those small things, which you're now doing day to day, and look at you. You're doing amazing,

Tanya 49:43
well. And you made a great point to me. I just listened to you the other night, and you said, I can't remember which number it was, but you said, you know, why can't you if you're at a 6.1 you know, why can't you try for a 5.9 and that really resonated. And I. Thought, You know what? That's a darn good point. I'm at a 6.1 Why can't I get a 5.9 what does that mean? Just watch when it hits 120 instead of reacting at 140 you know, react when it's 120 so now it's become like this little bit of a personal challenge to try to stay so on top of it without making myself crazy, yeah, but I work from home, so that's a big help to me to be able to, you know, because you work from home, and it's not too much, it's not excruciating to be able to do that. But I love that piece of advice. Why can't you get to a 5.9 if

Scott Benner 50:39
that's what you want, then there it is. Because I think the simple truth is, is that your blood sugar rising, let's say it's going to rise to 150 eventually, and you have an alarm set at 140 so there's an amount of insulin at 140 on a rise that's eventually going to get to 150 that will slow it down and bring it back to 90. But in that same rise, a rise, a rise, it's going to go to 150 if you jump in 20 points sooner, which could end up being 2030, minutes earlier. The amount of instant it'll take to negate that rise and go back to 90 is less than the amount it will take when you're at 140 Exactly. Yeah. And so if you've got the time and the and the bandwidth, and like you said, you said, you don't, I don't want anybody making themselves bananas about all this, right? But like, if you have that, then great. Like, then you used less insulin. You never get to 150 to come to 90. Maybe it goes to maybe 140 is the peak. Or maybe you got ahead of it so much that at 120 it just kind of leveled out and came back down again. Like, and at least, at the very least, you do that a few times. You understand how it works, you understand the insulin timing and the amount and how it impacts things, and now you can make a better decision moving forward,

Tanya 51:51
and the pre meal Bolus and all of that stuff. It's unbelievable how much that will change that. A, 1c. Oh,

Scott Benner 52:00
my God. I just had somebody say the other day to me about it was like, it was like, a review somebody left for me. And it was about, like, you know, an older person who had diabetes for a while who said, you know, I can't believe, you know, I no one in 2040, years ever said to me, Pre Bolus, your meals. And now I'm doing that. I'm having all the success because of this podcast. And I think when I hear it, I think, God, what a simple thing. It literally feels like they put you into a car and like, never said to you, like, hey, the one on the left stops at the one on the right makes it go faster.

Tanya 52:33
That is exactly nobody ever told me that I had not heard I Scott. I never even heard the term MDI until your podcast.

Scott Benner 52:43
I don't understand how that's possible that on day one people don't start telling you, because now again, we've gone over this good information. I don't see how on day one they don't start telling you, like, oh, look, a lot of this is timing and amount of insulin, right? It's about using the right amount of insulin at the right time. That's a big idea, but we're going to cover this over the next months to year, until it makes sense to you, because look at you, how do you make it five decades and not anyone ever tell you that it matters where you put the insulin in? It's insane. It's absolutely insane. We're getting up on an hour. I just want to see if we've missed anything that you wanted to talk about. I don't want to get too deep into this and you say, Oh, I wish we would have talked about this too. How are you feeling about the conversation? It's

Tanya 53:29
great. It's great. And anything you want to discuss, I'm an open book.

Scott Benner 53:34
You certainly are. I really do appreciate it. I tell people all the time that, you know, it's these kinds of conversations, a conversation where a person's willing to say something that they know someone's going to hear and think what's wrong with that person. You know what I mean, like, how could they think that or something? But those are the ways I think you open everyone's mind up to the idea that we all are not fed the same information about life or diabetes or anything else, and when we just put together what we've been told, and we do our best with it, and then later, you know, you have this out, this outcome that's, you know, off centered to a point where people like, What's What are you doing here? Like, how did you how did you contour you 1c to 12? How do you not know that that's not true, like, this kind of stuff. And that's how it's not ignorance, and it's not like sometimes it's not just willfully ignoring something. Sometimes somebody just set you on a path, and now that's the path you're on. That's

Tanya 54:27
exactly it. And you just become a creature of habit. You just keep doing the same thing over and over and over until eventually, you know, hopefully, you come to the point where you realize you know what, so many people are using this, and it was probably my best friend down in Miami, Miami on the Omnipod and the Dexcom. I was on the Dexcom and out the omnipot, and she said, I think you really need to try this. She said, If you don't like it, it was the visual she gave me. She said, You take the thing, you throw it off. And. Throw it in the trash. And she said, release, give it a try. She said, I can't tell you how much easier this is making my life. And so that was somebody I really trusted and respected. And so when she did that, I'm like, okay, all right, okay, I am going to do it now. So all that came together, and

Scott Benner 55:18
what's it hurt to try is generally point, generally speaking, a good way to think that's the point. Yeah, yeah. It really doesn't hurt you to give it a shot, and then the only thing you can have is a good experience or a bad experience. And like you said, you're not stuck with it. Just throw it away. Or say, Wow, I can't believe this. I mean, listen, my daughter's 20. She's been wearing an Omnipod since she was four, so go back 16 years in your life and imagine if you had a pump 16 years ago. Oh, 100%

Tanya 55:48
you talk about hindsight. You know, wishing you had done things differently. I wish I would have Yeah,

Scott Benner 55:54
no question. Does it make you sad to think about it like that? Or do you not? Are you not wired like that? Not

Tanya 55:59
really wired like that. I mean, yes, I have regrets that I wish I would have, but I think everybody has to do things when they're ready to do things. Everyone can tell you to do something, you should, you should, you should, but until you're ready to do it. You know, it's like what I used to always say about diabetes, if I would meet somebody that was newly diagnosed, and if they were one of the people I chose to share my story with, or not, I would tell them that you know what works for me may not work for you. You have to find your own way. For some people, it's the auto it's the auto ejector. For other people, it's multiple daily injections. For somebody else, it's the pump. For me right now, it's not the pump, it's the auto checker. But you might really enjoy the pump. You should at least be open minded, but you have to figure things out in your own way for yourself, in your own time, and just don't be afraid of change. I think that would be the advice I would give to somebody that's had diabetes 25 years plus. That said, No, I'm not ever getting a pump. Just, just be open minded. Don't be so fearful. Yeah, wonder

Scott Benner 57:05
what your Mumford story will be, you know, seriously, like, you know, you've got the Owen Mumford, you know, auto injector. Like, what are other people's stories? What's going to take them and make them go, Oh, my God. What have I not been paying attention to? So you haven't been listening that long, Tanya, but years ago, I would have used this phrase a lot. I would have said, you don't want to be the last person to look up and go, What? How's everyone doing it? Now, you know what I mean. Like, like, wait, what I got this? I wait, no, hold on. I got my beef and pork over here. What do you got? You know, like, like, that's what you don't want.

Tanya 57:38
But you as pathetic. Scott is my mom was actually the DR Benjamin Spock, the baby doctor of all time. She was his personal secretary. So we always had really good access to very good endocrinologists in the Cleveland area when we lived there at the time and stuff. So we were probably a little better off as far as medical availability than a lot of other people, even in 1972 when I was diagnosed. But that didn't even change a whole lot of things. Nobody really knew anything about diabetes back then. Boy,

Scott Benner 58:17
it's interesting, isn't it, because not everybody would agree, in hindsight, with some of the things Dr Spock said. But I do think that it makes the point. People are gonna have new ideas. They're gonna say them out loud. You should listen to them and see which ones make sense to you.

Tanya 58:30
Absolutely. At least hear them out right? Well,

Scott Benner 58:34
I mean, because we get so stuck in this is how we do it, because this is how it's been done. And then that keeps happening over and over, day after day into year after year into decade after decade, and before you know it, you've got doctors telling you things that no one's thought for 10 years. If they in a modern in a modern world and listen everything, somebody says that's new, isn't right. You know what I mean? Like, I'm sure I've said stuff on here where I'm like, You know what I'm seeing? I'm seeing this and that three years now, you're gonna look back and go, ah, that wasn't right. Yeah, at least we're talking about it and pushing envelopes to try to find new bleeding edges. You know, that's just, it just makes sense to me to just keep trying to grow because if not, I mean if not, we're all stuck in the same place, you know, 200 years ago, in the first thought anybody ever had. I mean, you know, I'm saying like, I don't want us to be putting leeches on people to get rid of, like, bad spirits, you know, or whatever. And the reason I brought it up earlier, and the reason I brought it up throughout the podcast, is because my very best friend is not alive anymore because of type one diabetes, okay, but moreover, he's not alive anymore because of the direction he got and the fact that he never looked past that initial direction, that's really what got Mike. He was diagnosed in the late 80s, and nobody really knew what they were doing, and he didn't know what he was doing. And now. I look back as the person I am today, I can see it always like urinating all the time, grumpy, but then all of a sudden, Dizzy, like, you know, his blood sugars were probably pinging up and down and up and down all day long. He didn't know what was going on. But as technology got better, through the 90s and into the 2000s he just didn't come along with it. And by the time he did, they just it, basically handed him Nova log. And they were like, here, you know, just this, this new fast acting insulin is going to work. Great. Imagine that. Imagine that. You know, 10 years ago, my friend was given Nova log for the first time, wow, after being diagnosed in 89 Wow. Now He's crashing himself while he had a car accident because he gave him, you know, he's shooting his Nova log the way he was shooting his regular and his mph and stuff like that. So he didn't know, he didn't know any better. And then, you know, he's having problems. He's having seizures, he's falling out of bed, he's breaking his arm. He's having all these problems. No one comes in to help him with it. And when he told me about it, and I tried to help. He was so resistant to being helped. And I recognize a lot of your statements and how he felt, I think like you don't need to tell me how to do this. I know what I'm doing. I don't need help, like that kind of stuff. And then all of a sudden, boom, you know, Hey, Scott, I gotta go on dialysis. And then that started. And then it was, you know, this isn't going well. And, you know, and dialysis is not fun, you know, for anybody who who wonders, yeah, really difficult on him. He couldn't work anymore. Now he's a guy in his, you know, in his late 40s, just can't go to his job. And now his life is sitting around going to dialysis, sitting around going to dialysis. Oh, that's awful. Denny's he and his wife are sitting in their living room one day Tanya, and they're talking about what to get for dinner, and they make a decision, and he stands up to go to the kitchen and just falls right over and and has a heart attack, really, just like that. And sadly, the paramedics saved him that day, but he died a few days later. Oh, boy, yeah. And so just, but he had the problems that that I described to you, like his, you know, it wasn't just his kidneys that were being assaulted by that extra glucose. It was also arteries around his heart that, you know, that, and then the dialysis is hard on your heart as well, so now it adds extra pressure. I've heard that, yeah, so I just don't want that. That is a needless thing to happen to people in a modern time. Agree,

Tanya 1:02:29
yeah. So agree, and they just Just don't be afraid to try. I mean, that's, I hope that's somebody takes that away from this podcast today. Just don't be afraid to try, and maybe don't wait 50 years to do it,

Scott Benner 1:02:43
50 plus, a long ass time. Tanya,

Tanya 1:02:47
that's crazy. It's almost humorous, yeah?

Scott Benner 1:02:50
Well, you know, because it's humorous in hindsight, because you can look back and look over all those years and think like, what was I waiting for? Right?

Tanya 1:02:58
Oh, absolutely. Yeah. And instead of being mad walking out of the JDRF meeting where they're talking about this wonderful device called a CGM that's coming on the market, maybe don't get mad. Maybe, you know, follow it. Maybe see when it's coming out, ask your endocrinologist. Hey, how can I get that when that comes out? You know, I would have done things very differently if I was, you know, if I could turn back the hands of time, but you can't. So you just have to move forward and use the tools you have, because they are really pretty amazing. You

Scott Benner 1:03:33
have a terrific attitude about it, and that's, that's awesome. I appreciate you sharing that. But also, you know, I said it before, but if your blood sugar is 300 all the time, and then someone comes up to you and to you and says, Hey, we really think there's going to be this crazy, you know, technology coming, especially back then, at a time when technology wasn't something that was happening a lot, right, where it meant that you got an am and an FM radio in your car right, right when that's happening. Like, would you have been more open to it if your blood sugar was 95 and stable. Like, do you think you you will never know? Is my point? Yeah,

Tanya 1:04:05
never gonna know. I just thought it was like, you know, they're raising all these these hopes and all these people, and you know, what a stupid thing to do was my thinking at that point,

Scott Benner 1:04:17
somewhere deep down in in the in the middle of your brain, in the bottom of your heart, you were hopeless about diabetes.

Tanya 1:04:23
Oh, I think that's a fair statement. Yeah. Okay, yeah. And however long I haven't remember when I was diagnosed, my mom told me that, you know, they told she said, Well, you know, oh my gosh, you know, how long, What would her life expectancy be with this type one? And at that point, Scott in 1972 They told my mom, 40, yeah. And so my mom thought, 40, and she says, so she could never have kids, nothing. And the doctor said she may not want to have kids. And my mom said, Well, what if she does want to have kids? And nobody really had the. Answers then, you know, and I was very blessed. I took darn good care of myself during those two pregnancies. And I was very lucky. I had no events. I had 2c sections. Both kids were born, healthy, beautiful, no problems whatsoever. Both had to be in a NICU for like, one day because, you know, diabetic mother, so they automatically put them in the NICU. But other than that, there was no reason for them to have to be in the NICU, and we all came out and lived a beautiful life. I

Scott Benner 1:05:33
often think about a person on the podcast who was diagnosed a long time ago, who said that they were diagnosed a female in college, and the direction they got from the doctor was to drop out of college because they might as well go live their life, because they're not going to live very long. And and that doctor also told her that probably no men would want her, ah, like, can you imagine, like, being in college and someone saying, Do you listen this education you're looking for? I'd skip it if I was you, because you're not going to live that long anyway, and don't get your hopes up about marrying because I don't know what boys are going to want you, Scott,

Tanya 1:06:08
I'll tell you what. That's a whole probably a topic for another day. But I had a boyfriend in high school who was a wonderful person. His mom not so wonderful, and she told him, when he told her that I had type one diabetes, she said, Well, no wonder she has her claws in you. And he told that to me, and I will tell you what that messed me up for decades. I had such a low self esteem that, you know, I did date underneath me for a while because I believed what she had said that day. It caught like a razor blade, and it wasn't until I got older and I got out of college, and I got my job with hotels, and I met and married the most wonderful electrical engineer, and life is stellar, but, man, they can. People can do some pretty damaging things if they tell you that earlier in your life,

Scott Benner 1:07:11
couple of words really cut the wrong way. Yeah, you can't get rid of them for decades. For decades, the idea was, you like this boy a lot, but you didn't really like him. You just wanted to hold on to him because you had problems and you were going to need his help, yeah, oh gosh. And then you started thinking, like, is that how people are going to see me? Yep, okay, yep,

Tanya 1:07:32
exactly. And I dated underneath me for a while because I'm like, Oh my gosh. You know when he and I broke up, oh my gosh, and I went to college and, you know, dated other people and and nobody was really on the level that I should have been looking for. They all had issues. And who wants to marry an issue anyway. So you date people underneath you, and then you don't have to worry about that becoming a reality, where maybe the good person won't want to date you, let alone marry you, right? So I didn't have to put myself in that position. You

Scott Benner 1:08:06
thought, Well, I'm up. I'll go find other people that are too, and that way you won't be able to exactly argue with my problems about right? I'm sorry, right, right, but

Tanya 1:08:15
it's all good now. I mean, we Yeah, hopefully we grow up, we learn things. You know, there's a lot of bad, stupid advice given to us over the years, and that was just one piece of it. Okay,

Scott Benner 1:08:27
well, Tanya, I'm gonna thank you. This has really been wonderful. And, like I said, I appreciate you being so open and coming on here. And I'm super excited for you that you've, you know, like, you made that leap from just like, oh, this is good enough to I wonder how good this could be, you know, really, really wonderful, especially at your age. And I don't, I know that's hard to hear, because, listen, I people talk. I'm 53 and sometimes people say stuff like that to me, and I'm like, Oh, I'm not that old. But I'm not saying you're like, you know, at the end, but I am telling, yeah, but at this age, to make a big adjustment like this, in thinking technology, looking inward at yourself, like all the things that you've done are all exemplary. I think it's wonderful. I hope somebody's told you

Tanya 1:09:08
they're proud of you, yeah, yeah. Thank you, Scott. I appreciate that, and I appreciate that everything you do and you've done and are still doing to try to educate the community, because there's a lot of us out there that really need some guidance.

Scott Benner 1:09:25
It's my pleasure. I appreciate you saying that hold on one second for me. Okay, okay.

I'd like to thank the ever since 365 for sponsoring this episode of The Juicebox Podcast. And remind you that if you want the only sensor that gets inserted once a year and not every 14 days, you want the ever since CGM, ever since cgm.com/juice, box, one year, one CGM guys, you want to go for. Walk with touch by type one in Orlando, you can do it and you can have a great time. Meet a lot of wonderful people. Touched by type one.org. Go to the Programs tab, click on Steps to a cure, and get yourself registered right now for the beautiful walk that's coming up on March 8 in Orlando. Touched by type one.org. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Are you starting to see patterns, but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more if you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 the episode you just heard was professionally edited by wrong way recording, wrongway recording.com you do.

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