#1320 Good Puddin'
Barb, diagnosed with type 1 diabetes at 44, shares her family's extensive history of autoimmune diseases.
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Scott Benner 0:00
Hello friends, welcome back to another episode of The juicebox podcast.
Look at this. Barb is 64 she was diagnosed at 44 that's 20 years since she was diagnosed. She also has OmniPods. Has type one. Interesting. He was diagnosed and he was 10. Sorry, I just read this to you. I don't know if you realize it or not. She's with she's a twin. Look at that. It's interesting. Celiac and hypothyroidism the family, other autoimmune stuff runs rampant through her family history. Well, I guess we're gonna find out all about it now, aren't we? 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 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. Of course, if you have type one, or your child has type one, and you're a US resident completing the survey AT T 1d, exchange.org/juice box would be greatly appreciated. This show is sponsored today by the glucagon that my daughter carries. G vo hypo pen. Find out more at gvoke, glucagon.com. Forward slash juice box. US med is sponsoring this episode of The juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well. Usmed.com/juice box, or call 888-721-1514, use the link or the number, get your free benefits. Check and get started today with us. Med this episode of The juicebox podcast is sponsored by Medtronic diabetes, and later in this episode, we're going to be speaking with Heather, who will talk about the importance of education and understanding the impacts of hyperglycemia. Medtronic diabetes.com/hyper diabetes.com/hyper.
Unknown Speaker 2:24
Hi. My name is Barb.
Scott Benner 2:26
Barb. How are you?
Barb 2:27
I'm well, thanks. Good morning.
Scott Benner 2:29
Good morning. And you're an audio engineer. Is that correct? You're
Barb 2:35
not quite remember, fake it till you make it. Tech person here, yeah,
Scott Benner 2:40
you're doing you're doing well now where you sound terrific. So let's see what we want to know. How old are you? How old were you when you were diagnosed? All that stuff.
Barb 2:50
I'm 64 years old. I was 44 when I was diagnosed. So 20 years you have to tell me if you want the story, because it's that will take a while in and of itself. I have a two boys. One is type one. I'm one of 12 kids, large, large, extended family. Wow.
Scott Benner 3:13
How many kids do you have?
Barb 3:16
I have two. They're now 27 and 25 and the 27 year old was diagnosed with type one when he was 10. When he was
Scott Benner 3:25
10. Are there other autoimmunities in your family? Did your husband have anything or on his side or
Barb 3:30
Well, Scott, my whole story is around the fact that I'm one of 12 kids. I'm a twin, right in the middle of the pack. It's it's kind of fun and games. When I go to the doctor and they ask, what, tell us your family history, and I say, how many days do you have lots of autoimmune issues within my family? I'm the only sibling with type one, but we have a niece with celiacs. We have several hypothyroidisms. We have showjourns. We have what else, an aunt with lupus, so it's been kind of somewhat rampant, and Barbie makes your Irish Catholic close German, Catholic German. Okay, all right. You know, when I was small, Scott and my older brothers and sisters friends would make that comment. You know, Catholic, right? I had no idea what they were talking about. And now I do,
Scott Benner 4:27
yeah, you didn't know that they thought your parents were building an army for the Lord.
Barb 4:34
Exactly. I
Scott Benner 4:35
don't even know. I don't even know if it's that sinister. I think, I think the Catholic Church is just like, make more babies. We need people donating. So, hey,
Barb 4:43
yeah, that's, that's another podcast, T, 1d, in the Catholic Church. So my mother was type one. She was diagnosed at exactly the same age I was. Well, we think 44 she was one of nine children, and on her side. The family, there are at least 14 known type one diagnosis. Geez, really, really.
Scott Benner 5:07
And she said to herself, you know what I should do? I should make 12 babies.
Barb 5:11
You know, Scott, I don't.
Scott Benner 5:14
They didn't see it that way, did they? No, no, I
Barb 5:17
don't. I don't know that she knew. Because, you know, that's part of one of my messages to the world today is talk within your families about your type one diagnosis. You know, I was figured out that I was 12 when my mom was diagnosed. I don't remember her diagnosis. I put a call out to my living siblings to say, who remembers mom's diagnosis? Nobody. Nobody remembers how it happened. We think she was pregnant, or soon to be pregnant with her last child at 44 and she spent, you know, the rest of her life taking one dose of insulin a day, testing with urine strips the entire time. She died in 1998 At what age she died at age 69 pancreatic cancer. Okay,
Scott Benner 6:11
so unless you can get type one diabetes from a intercourse injury, I don't know how to guess what happened to your mom, but that seems most likely to me, that lady was probably having sex or cooking. You know what? I mean,
Barb 6:25
exactly, exactly, a lot of cooking. Oh,
Scott Benner 6:29
my God, there's so many kids, but that's really your it's a great message, honestly, because even modern day, the times I say like, oh, like, some I'll say, is it in your family? And they'll go, No, my cousin has it. I'm like, is that not in your family? Like, what are we talking about? Like, that's, that's in your family. But people still don't think about it that way all the time. It's interesting, right?
Barb 6:51
Yeah, and I wasn't diagnosed till after she passed, so I never, ever had a conversation with her about it, yeah, unfortunately, right, you
Scott Benner 7:01
know, but that's part of what, how she did it, right? Like, she went to a doctor and somebody said to her, this is what happens. You take this shot now, and she's like, just show me how to do it, because I got to get back to make him, you know, like, I'm busy and so, like, and it was not, never even spoken about. So you went back to your siblings, by the way. You said, living siblings. How many of them aren't
Barb 7:20
a brother and a sister have passed away. My brother passed away first of undiagnosed source of kidney disease at the age of what was Jim, 6263 and my younger sister passed away in 21 of stomach cancer, oh my gosh, yeah, it's not a, it's not a pretty picture, genetically in our family. But so we, we, there's 10, there's only 10 left. Yeah,
Scott Benner 7:52
you guys can only, you guys can only play basketball against each other now,
Barb 7:55
oh my gosh, yes. I
Scott Benner 7:57
do want to hear a little more about that remembrance you have of realizing, like we grew up with mom who had diabetes, and it was never spoken about.
Barb 8:04
All I remember, and my childhood memories are fairly scant as it is, but all I remember is we lived on a small dairy farm, kind of in the well, small dairy farm, and she would go out into a little anti way back door area to take her shot every day. I mean, when I think about what she did and didn't do, and she, you know, she, she had a ringer washer so she would, you know, on laundry days. And I learned this because I now have her medical notes, but only as far back. It wasn't to diagnosis, but the since, like 79 I think I have, but on her notes, it will say, you know, took 31 units of humologue. First. It was NPH, then Humalog, but only 29 on laundry days. You know, fascinating, right?
Scott Benner 9:02
Figure that out. Yeah, I get lower on laundry days, so I'll take less insulin. Yeah,
Barb 9:07
yeah, yeah, long periods of time between when she would see the doctor, between pregnancies, of course, you know, and she was done being pregnant when she had the diabetes. But, you know, I read some notes. You know, it was three years since she had been into the doctor. So, you know, she was self managing and living unbelievably, I remember a couple episodes of low blood sugar. It was never a thing, you know, nothing to get too excited about. Go take mom some juice, or it was very when I think back, you know, I'd give anything to just have a conversation with her of and to empathize. Boy, that must have really sucked. Yeah,
Scott Benner 9:51
she's in another level of alone because all those people around you, but you're not sharing it with them. The medical community is not real valuable at that point about it. This episode is sponsored by Medtronic diabetes. Learn more about hyperglycemia at Medtronic diabetes.com/hyper
Speaker 1 10:09
Well, Hi, I'm Heather lackey. I am a wife and mom. I have two children that are seniors in high school, and I've had type one diabetes for 34 years. And I'm a dietitian and a diabetes educator. You know, I'm the Director of Global Medical Education. I lead a team of clinicians that are developing content.
Scott Benner 10:31
How do you feel when your blood sugar's high? Irritable,
Speaker 1 10:34
thirsty, hungry.
Scott Benner 10:37
What do you enjoy most about your job? See
Speaker 1 10:40
education working. See people thriving. That's kind of the fuel that feeds, you know, my fire.
Scott Benner 10:48
What would you like to see community members talk about more hyperglycemia
Speaker 1 10:51
is the critical thing, right? That leads to short term and long term complications. Hyperglycemia is the greatest unmet need in the treatment of diabetes currently, and I think that that's where technology can help if
Scott Benner 11:07
you're having trouble with hyperglycemia and would like to talk to other people in the diabetes community. Check out the Medtronic champions hashtag, or go to Medtronic diabetes.com/hyper if you take insulin or sofony ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G VO, kypo pen. My daughter carries G vo kypo Pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that, I trust low blood sugar. Emergencies can happen unexpectedly and they demand quick action. Luckily, jivo kypopen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store jivo kypo pen and how to use it. They need to know how to use GVO kypopen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulinoma, visit gvoke, glucagon.com/risk, for safety information. That's a lot to take on by yourself. But I mean, honestly, it sounds like she was, I mean, it sounds like she was more than capable of doing that, because, I mean, Jesus, like she was doing everything except, I mean, I don't know, I was going to say milking the cows, but she might have been doing that too, right?
Barb 12:43
She did some milking of the cows, bailed hay. She worked at a supper club on the weekends. She was, we call her small but mighty, you know, she was a force. She
Scott Benner 12:54
worked at a supper club on the weekends, like cooking or serving or something.
Barb 12:57
Server loved it, yeah? Well, we, we think she loved it because it, you know, got her out of the house. She
Scott Benner 13:03
loved it because your dad wasn't there with his pants off. That's why she was like, I need a break. I'd rather bring strangers food.
Barb 13:17
All right, I'm sorry and so but part of the challenge of kind of weaving together family history is the long span between the oldest and the youngest, and the fact that, you know, my oldest sister was a you'll love this was a nun for a while, ended up leaving before she took her final vows, but so she was out for A couple years of high school at a nunnery. And, you know, the older siblings as they left, everybody left home after high school, you know, there was no hanging around. There was no space. I would imagine somebody needed that bed. Yeah, so we all have different memories of what home was like and what, to be honest, we all grew up very independent, you know, we, we were all into kind of our own self care, and kind of still are. I mean, we're kind of, so
Scott Benner 14:10
it's a function of having that many kids, right? You just can't, like, you can't take care of all them. You can't make sure every one of them's doing, you know, exactly. Well, it's almost like, look, you're alive and you're competent. You got to get out of here. Like, I need the space I need, the time I need. I have two kids, and I feel overwhelmed by making sure they're okay. It's so I don't I get that I really do, like, it makes sense, did it feel like you were ignored? Or is that just how it was?
Barb 14:36
You know, it was, it was a matter of reality. I think that, you know, I always joke with friends that we just, we don't have a Hallmark card family, you know, I go look, you know, I'd look at Father's Day cards. Well, no, he didn't really teach me to ride a bike. Or, you know, I didn't have that kind of personal relationship with my parents. What? Is it bad? I don't, you know, it's just what it was. It was, what it was. We were, you know, we grew up to be very independent. We're amazed that we all turned out fairly okay. You know, all went to, you know, pretty much have all been to some type of post secondary, myself on down. Everybody went to college. I mean, it's pretty remarkable, advanced degrees, you know, the whole nine yards, so they did something, right? No, no,
Scott Benner 15:29
yeah, I'm not, it's funny. I hope that doesn't sound like this. I'm not saying anything's wrong with it. I'm just, it's, I'm interested in the human part of it, beyond that, like, obviously, they did the things they were supposed to do. And beyond, if you guys all went to school and, you know, etc, took, you know, know how to take care of yourselves. But I'm saying like, on a personal human, like little girl inside of you level, was it lonely, or was there no ability to be lonely because of the people? But there's a difference. Absolutely
Barb 15:54
it was lonely, absolutely okay,
Scott Benner 15:58
because you don't have contact and time with your parents, really, right? Yeah, right. So which one of your like when I say to you, oh, they cared more about there's a name that pops in your head, right? Well, here's
Barb 16:12
the deal. I was a twin. Right in the middle of the 12 there were six boys and six girls. Dad's joke was six of one half a dozen of the other. And so the twins got a lot of attention, right? Because we were an anomaly, kind of unusual. They take us places, right? Because we were the twins. I think at different times, we all had some shining moments. I, you know, I see these great photos. The three oldest were, were girls, my three oldest sisters, moms sewed clothes for all of them, and they're dolls, and they just look adorable. And then two boys showed up, and, you know, again, not as
Scott Benner 16:51
much fun with the clothes.
Barb 16:55
And then the, you know, two more of us showed up. So I think it, I don't think of any one of us as as really, but being twins, I think just because we were different, right? Like we got to hold the Merry Christmas and the family photo at the front of the gang, which I'm sure you're going to want to
Scott Benner 17:14
see. But you, you were the FA you, you guys were famous for being twins in the family, basically,
Barb 17:18
right? Yeah, right. I think we got a little more attention because of that, nothing we did.
Scott Benner 17:24
Who's a better story than that's number seven? Yeah?
Barb 17:29
Well, and you'll love this, because at my when you say number seven at my dad's funeral, we all wore numbers, I bet, yeah, simply because, you know, again, many of us had moved out of town, and so people knew which one we were.
Scott Benner 17:44
Do you have closer relationships with siblings that are closer age to you, and then the people on the ends feel like they're not as related?
Barb 17:54
There is some of that. What I found personally is because I got married older and had kids. As an older parent, I have somewhat more in common with some of my younger siblings who have kids closer to the age of my kids. Sure, you know, as you know, as a particularly as a stay at home dad, you kind of gel with those who have kids the same age as yours. So there's some of that. And so it's changed through the years, yeah, but there always seemed to be somebody, you know, if you needed something, you could go down the line and decide who you wanted to talk to that day. So
Scott Benner 18:32
Barb, my wife and I just had this experience the other day we were out. What were you doing? I think we were buying, like, hanging plants for outside. I don't know how you guys order your diabetes supplies, like CGMS, pumps and testing equipment, but at our house, we use us Med, and I'm gonna walk you through the entire process right now. I'm looking at the email from us med. It says it's time to refill your prescription, dear Arden, please click the button below to place your next order, then you click the button that was it. Two days later, I got this email, thank you for your order from us. Med. We wanted to let you know that your order, and it gives you an order number was shipped via UPS ground. You can track your package at any time using the link below, and then there was a link, and then it showed up at our house. Now I'm going to walk you through the entire chain of events. On the 29th which was the Saturday I clicked on the email on that Monday, the first, I got an email that said the order had been sent. Four days later. On the fifth, the package arrived. If you can do it easier than that. You go get it. But if you can't us. Med.com/juice, box, or call 888-721-1514, get started today with us. Med, get your diabetes supplies the same way we do. And we bumped into this woman who we remember because. Our kid played baseball with coal and, like, as children, not not in, like, college or something, as children. And we had a nice conversation about selling our houses and moving out of town and all the stuff that you talk about when you're in your 50s, right? My wife and I remarked to each other, when we walked away, like, how valuable that was, because she's ahead of us, and she could kind of tell some stories about what she was thinking at the time, and then we realized, like, she's eight years older than we are, but we know we only know her because our kids are the same age. That's the exact same point you were just making. Like, I have nothing in common with this woman. She's lovely, and I spent a lot of time staring at her, like on a grassy field, but like, I wouldn't have known her if she didn't have a child the age of my son. That's a thing that happens to us a lot, because we were younger when we got pregnant the first time. It's very interesting. So okay, so you've got the diet, your mom's got it. We don't know about it really. It's it's an interesting story about how she lived with it, but it's not like you're not functionally understanding what's happening to or anything like that. Give me the time frame there, like, what year was it when she was diagnosed? You know, she
Barb 21:05
was diagnosed in 1972 Wow. At age she died into in 1998
Scott Benner 21:13
8292 she only she made it like 25 or so years with diabetes, maybe 27 right? Okay, right. Did she do that management style? One shot a day her whole life. Did she ever come around to something else?
Barb 21:27
Never. I'll be damned to my knowledge, she did end up in a nursing home toward the end of her life. So I don't know if they managed her differently then, but all the doctor's notes I have are that she was on this, you know, one shot of she went from animal insulin to the humulin. There's one. This made me chuckle. And I should, I should have read these notes. I read them a long time ago when I was first diagnosed, and I just pulled them out again. One of the notes say that she's recorded as saying that three of her grandparents? No, it says all four of her grandparents had diabetes
Scott Benner 22:06
of some kind. They just called it diabetes, though, right? But
Barb 22:10
you know, who? Who would have known that we I just learned in the last few years that all of was it all of my grandparents, or three of the four, have Christmas, birthdays again, you know family lore that
Scott Benner 22:23
you think somebody would have said, would think? You think somebody would have shared they were too busy. They were milk. Your dad was milking something 2020, hours a day. And then I love that you're old enough that we can joke about this. And,
Barb 22:40
oh yeah, I'm way old, so yeah, oh my
Scott Benner 22:45
God, that's fascinating. You have three grandparents that were born on Christmas Day. It's not a thing
Barb 22:48
you knew. That's correct. Never talked about, never talked about, I think everybody
Scott Benner 22:53
who feels like they're ignored by their family modern day should listen to this and be like, Oh my God. They don't even know this. And
Barb 22:59
I, and I our second son was due on Christmas, and I had known, I found this out, and I thought, Oh, he's destined, right? But I willed him out on the 22nd
Scott Benner 23:08
so your family has sex once a year. That's not possible for your parents. They had to be doing it at least a couple times,
Barb 23:16
and there was a crib in their room. Scott,
Scott Benner 23:18
wait a minute, what's the what's the nine months on that? What's nine months before Christmas?
Barb 23:23
Is it Mother's Day? It's December, January, February. So I guess it's
Scott Benner 23:27
Valentine so colder when we can't be outside as much
Barb 23:31
and farming, you know that, that, that Iowa stuff, you
Scott Benner 23:35
don't have as much light. So, oh, I see.
Unknown Speaker 23:39
I do that too.
Scott Benner 23:40
I see what's going on. No, no, yeah, no, I see what's going on. Like Mother's Day. Valentine. Hey, Mother, what would you like for Mother's Day? How about nine months of carrying a baby? I prefer a locket.
Barb 23:57
Yeah, in more ways than one, right?
Scott Benner 24:01
You hilarious. It's fantastic.
Barb 24:03
Okay, yes,
Scott Benner 24:04
oh, that's so funny. Okay, so let's, let's maybe fast forward a little bit here. So are you were diagnosed before your son? That's correct. Okay, what do you remember about your diagnosis? Oh, I've
Barb 24:17
told the story quite a few times. So my kids were eight and six years old. I was at home at the time and just started a new work gig. I woke up one day, literally, I think it was I woke up one day and I couldn't see across the room. It was, it affected my eyes first. So I took myself to my optometrist, and he examined me, and he said, Oh, this is kind of rare, but I've seen this before, and you have an infection in your eyes. And of course, my first thought is I, and I said, my mother was a type one diabetic. Is it diabetes? It's not. Diabetes, not
Scott Benner 25:00
diabetes. You have a rare infection. Okay,
Barb 25:02
so, and at the same, you know, I'm five seven, about 120 pounds at the time, and I'm, this is going to be a refrain, okay, so you don't have diabetes. So he gives me some drops. Doesn't do a thing. My eyesight is getting worse. He sends me to an ophthalmologist in town, who says that I do indeed have this eye infection. I said, Doc, my mom had type one about the same age. You're not diabetic, which made me feel good, right? Yeah,
Scott Benner 25:34
I just have a horrible eye infection. I
Barb 25:37
didn't want to be diabetic, right, of course. So my eyesight continues to get worse, to the point I had just started this job where I was doing some travel. I will never forget I had a huge bottle of water that I took in the car with me. I had gotten contacts. Had never, hadn't I had laser surgery back in 2000 hadn't worn contacts for years. Was in contacts for my distance vision, and I had reading glasses so and at the time, we were looking at maps and stuff in the car. I'm like, juggling eyeglasses and water, and I was a mess. So this goes on, and he's about ready to prescribe some pretty serious eye drops, like there could be some kind of big side effects, yeah. And I thought, okay, in the meantime, I have this. I have this. Now. Have this raging sore throat. I haul myself to my internist, and I said, you're going to do two things, you're going to test me for strep, and you're going to test my blood sugar. Guess what? She said, You're not diabetic. So they take my they do it. I had a raging throat infection, and my a 1c. Was 14, Jesus and and the nurse calls, and she said, I'm surprised you're standing up. And I said, I'm surprised too. And of course, guess what? The next thing was, well, it must be type two, right? Yeah, I'm five 700 and now I'm down. I was down. Oh, that was the other thing. I had all the classic symptoms. I had lost so much weight, I could barely find clothes to fit me. I was, look, I was wearing like, size twos, and I was not a size two, but I was, you know, I was a mess. So they first dealt with me as as type two. Metformin didn't do a thing. She kept saying, you know, you can't be type one. I said I could be so I took myself to an endocrinologist at a bigger city close by, and indeed was found to have type one. And so, you know, my family all sent me D gifts.
Scott Benner 27:56
You got a bunch of gifts? Yeah, I got a bunch
Barb 27:58
of gifts. But, you know, and to be honest, yeah, it was hard, you know, I didn't want to have diabetes. But on the other hand, my vision came back, and, you know, I started putting on weight. But it was hilarious. They were sending me to nutrition classes, and I was the only type one in the room with all these type two folks. And it was crazy stuff. So anyway, and then two years later, my my boys and I have a different story. They said that that I tested them regularly. I think they asked me to test them, you know, they'd see Mom Perkin herself. That's how I remember it. We'll get mad on the next call his test, his blood glucose was like 253, my first thought was not, it's not diabetes. My first thought was, oh, so. So the story gets better. So I take him to the pediatrician. He's not diabetic. It must be hormones. He's now 10 years old. 10 must be hormones. I said, I don't think so. So once again, he had gone to a swim camp at a college nearby, and, oh, in the meantime, I took him to my endocrinologist, who happened to be, you know, he could do pediatrics, so they did the glucose tolerance. In the meantime, he went to the swim camp, and he remembers getting this call from from us, saying that he had type one. And his only memory is the coach at the swim camp came over and said, buddy, I have diabetes, and the sugar free pudding is really good. In the meantime, he's doing okay, because he's, you know, he's active and he's swimming and he's early, right? That we've caught it early. We go down to a children's hospital. That's, that's another story, because they sent it. They wanted us to be admitted to the hospital. Well, there's no room in the hospital. We're sitting in the lobby, which was health. People in lots of ways, because we saw lots of children in much more despair than my son. My son felt pretty normal at the time, so that was a good lesson for him to look around and say, hey, I can do this. And eventually they came down, saw my log, saw that, you know, I kind of knew what I was doing, and pretty much sent me home. And so ever since then, we've, we've really kind of been the self managing type ones. How does
Scott Benner 30:26
that work for you? Barb, what are your outcomes like?
Barb 30:28
Day to day? Outcomes are pretty good. I tell my son, still tell him to do as I say and not as I do, because I tend to be less disciplined about myself and more about the parenting, end of it. But our outcomes are we? We think we're doing fine. I tend to be in the sixes. He tends to be in the mid, mid, lower sixes. So we're both on Dexcom and OmniPod. He now lives in England. No, which is very interesting. That's another story. Jolly good. Yeah, Jolly good. So it's been but to be honest, got he and I have had these stories. You know, our our experiences with endocrinologists have just been not unlike anything you haven't heard. I've heard this on many of your podcasts. All I want them to say when I go in is, how can we help you? How can we help you? Because I've been managing every day for the last 365 days, how can we, or the last, you know, whatever it is, every six months? How can we help you? Instead, they're looking at charts and numbers and come back with an they what they think of as the answer. And I'm like, You didn't ask me, like, what's going What can you didn't ask me anything. So we kind of Matt and I used to joke that we would be, like, telling them things. And I've been able to do that even more now that I've, you know, become the social media maven that I am with the juice box and other I tell you, the the things I have learned being online is heads and shoulders over anything, anything I've ever gotten in a doctor's office. Yeah, you know, we looked at the sugar, surfing stuff. We took their book. They started handing that book out to other patients. I said, you know, there are other things too. You know, they were just grabbing hold of things, the misinformation we've been given. It's just been kind of, I'm still in awe. Isn't the right word, because that has a positive connotation. But I'm just so disappointed that the medical community hasn't embraced those who live with type one diabetes in a way that would be educational and best practices with the right outcomes, right? And I know you know all this. You know they're worried about liability and they're worried about but you know to to I would often find things out through the years, and I'd be like, Well, why didn't I know that then, why didn't, why didn't somebody tell me that? And things have changed, right? You know, we were early adapters of Dexcom and had it with the big needle and the syringe and, um,
Scott Benner 33:15
I'm fascinated Barb, that you don't really need to tell people that much for them to be able to figure it out like, I think, where the where the medical community can go wrong sometimes, is thinking that they have to give you an absolute map step by step. It has to be verifiable and correct, and it'll work every time the way we wrote it down here, for every person that's ever lived. You really just need to tell people things like, hey, you know what? This is how insulin works. You should try adapting that to your life. Here's how food impacts your insulin. Here's how insulin impacts your food. Here's 10 tools that'll you know, you'll probably use over and over again, pre bolusing, for example, little if they're not big ideas, I feel like it's a thing. I hate to say a toolbox, because it sounds trite. You do. You're giving them a toolbox full of tools, and you're saying, like, Look, everything you need to live is in this toolbox. I can't tell you exactly when to use them, but I think if I told you what all these tools do, you could have an experience and think, oh, I should have used this screwdriver today. Like that would have worked here. And then eventually, a couple of months into it, you reach for the screwdriver when you need it. You don't wonder what I should have been doing. Does that make sense? Absolutely
Barb 34:26
and but don't you? You know, I was listening to a podcast earlier today, and I thought, don't you get nervous when you seek comments on the Facebook page and hear things in a podcast where people are totally like someone was asking where to find the transmitter, like, where on their body, was it? And I thought, how do people manage when there isn't even a base? Level of here are the facts. Like, here you
Scott Benner 35:03
call nine out of 10 medical supply companies. They don't even know what they're sending you, right, right? And they do it all day long with a few things. And you'll say, hey, I need, like, back with g6 you'll be like, I need sensors and then a transmitter show. So they go, Oh, no, you can only have two of them a year, or something like that. And you be like, wait, no, I use one every 10 days. No, no. It says, here. I'm like, No, you're looking at the transmitter. Oh yeah, you're right. Like, yeah, okay, so if no one knows, then they can't tell somebody. And then you get home, and all you have to go on is, this doesn't seem like it's going right, but then they take that from you sometimes by telling you, oh no, you're doing great. You're doing great. So you go home and you have all these experiences that in your gut feel like, I don't think this is what should be happening to me. But then the doctor says, no, no, you're doing terrific. Don't worry about it. And 81 See, that's great. And then you go, Oh, I'm doing great. And then when you're 64 you're in a home, you know what I mean? And then it's too late, and then no one left the blame. So I, my gosh, I, by the way, I don't want to go backwards, but your mom was in a home in her 60s.
Barb 36:08
Well, she had pancreatic cancer. That was mostly what put her there. Yes,
Scott Benner 36:13
Barb, my point was going to be, how amazing is it over the last two generations of what 60 years old looks like, oh, you know what? Tell me about
Barb 36:22
it, because I mirror her diabetic diagnosis. I'm hoping that I won't mirror her pancreatic cancer diagnosis right at 68 so I've looked very closely at the differences in our lifestyle, and there's really no markers yet for pancreatic cancer that we are aware of. So, you know, my doc, my internist, and I have a plan that at around 6667 I'm going to have some acute pain, that they're going to have to do a, you know, whole series of imaging tests for just to try to get ahead of anything that might show up.
Scott Benner 36:58
Is there a way to look before a pain comes,
Barb 37:02
that's what I mean. We're gonna make up the pain. Oh, I
Scott Benner 37:04
see I hurt. Run a scan. That's a good idea. Look at you. Barb. I just this is gonna sound self serving, but it really isn't. It's just it's apropos of the conversation I was I was in a retail situation the other day, and there's this girl working there, and she's having a conversation with me and someone else that's there about how people think she looks really young all the time, and she's in college. And I looked there, I was like, well, you really do look like you're in high school. And she's like, I know. And I said, Well, you know, it's not. And she talked about how it's not very fun for people to think you're younger than you are. And I said, Well, that's now when you get older, you're gonna think it's terrific. And she kind of got what I was saying, but not so much. And I said, let me I'll give you an example. I said, How old do I look? And I said, Be very honest, we'll never see each other again. Who cares, right? And she's like, you could see her struggling. She wanted to say one thing, but she was gonna say younger. I was like, Don't say younger, just because you think, like, I don't want to hurt anybody's feelings, I said. And she goes, you're in your late 30s. And I was like, ah, early 50s. And she was like, wait what? And then you could see, like, genuine, like she wasn't being nice anymore. She was like, What the hell are you talking about? And I said, that's what I'm talking about. Like, when you're older, it'll be great if you look younger, but at 52 I think back on my father, he looked 52 and that's not just from my perspective. I can see pictures of him. If I showed you a picture of my dad at my age, you'd think he was 20 years older than me. It's really, I mean, really something. So I don't have a lot of like, I know the cancer thing is worrisome, but as far as the diabetes stuff goes, you're not in the same world as your mom was, you know, absolutely, yeah, and your son's gonna do better, even, absolutely, he already does. So yeah, and he already does because he's got a different perspective on it than you do. Even you're probably tainted a little bit by your mom's perspective, I would imagine, you know, and you know, along
Barb 39:01
those lines, Scott, I'd like to say that, and I've said this to other parents, I have never, ever been concerned about my well being as a diabetic. Never meaning
Scott Benner 39:15
like, well being, like, Well,
Barb 39:17
okay, so you know, you you, you you see a lot of stories of parents kind of just so much living in fear for their kids, and I think I've often shared that, because I'm in control, right? I even, and I've never been a teenager or young adult, but you know, my husband traveled a lot. I never, ever felt afraid to be alone. Have you ever had a scary low? I've had, I've had two scary lows, and they were both precipitated by alcohol. Mm, hmm. So you know, didn't eat. So I know what that feels. Right? But I'll also share when my son went to college, and I was always afraid for him, because I didn't have control over him, right? You know, I've that self efficacy. But when he went to college, he went about six, seven hours away. He didn't wear a Dexcom at the time. He was a he was on a debate, speech and debate team, and competed nationally, and didn't want any one more thing to think about with buzzers and beeps and alerts and vibrations. So, you know, bides me, and I said, you know, how do you want this parent child thing to go? And he said, Mom, you're six hours away. I need to create my own village here, of people, yeah, and I will never forget that, because, and he used that village a couple times, you know, he was sick that boy, they brought him, you know, they took the reins. Not every kid is lucky to have that kind of group. But it made so much sense to me that, you know, if I got even, if I was on a follow up, six, you know, the only thing I could do was call 911, right? And I get that people do that, but I often say, you know, knowledge is power, knowledge is power. Knowledge is power. And the more we can equip ourselves and those we love with knowledge. That's that you know goes back to sharing information and being informed and talking to people and sharing the fact that you're diabetic with those closest to you. It just makes so much sense to me, because it, I don't know, it gives me a sense of control. Yeah,
Scott Benner 41:39
now I understand. I also think you've there's to some degree, some luck involved, that you haven't had a situation that sticks to you. You know what? I mean,
Barb 41:49
absolutely, yeah, I totally agree with that.
Scott Benner 41:53
I also think the way you grew up, like, even if it happened, you'd be like, Oh, I was expecting to die, so that's okay. Like, I mean, you grew up in another time. You know what I mean, yeah, yeah. Actually your parents, by virtue of what they did for a living and where they lived, you almost had an experience growing up that was a generation behind your actual generation, if that makes sense, right? Yeah? So yeah. You have like a you have, like a 1940s attitude about life. There you
Barb 42:19
go. You do, right? We did have an outhouse until we were born in 1960 Yeah, that's my point. You know? Yeah,
Scott Benner 42:25
things don't seem as bad when you're not in the in the snow. You know what I mean.
Barb 42:32
So the other thing I wanted to talk about is this study going on at the University of Chicago. You remember that precision, T, 1d, Does that ring a bell at all? I
Scott Benner 42:42
mean, I remember it from your notes that you put here that you wanted to talk about it. So is it good? Can
Barb 42:46
I talk about that? Oh, my god, yeah. Wait, do
Scott Benner 42:49
you think that I stopped people from talking? Do you think I'm over here going, Nope, move on. We'll edit that out later.
Barb 42:54
No. But you might have a you might have a plan of some. Oh, my
Scott Benner 42:58
God. What would that look like I, you know, it's funny. I got this note from somebody the other day that was really touching about how she was in the Yeah, waiting room at the endos office, and another person in the waiting room overheard her get bad advice from the medical staff. And so this woman followed her outside, stopped her and said, Hey, listen, what they just told you is not even close to being right. So if you would be willing to give me your cell phone number, I'm going to text you something that I think would help you. And she texted her the, I think the bold beginning series in the podcast, yeah, you I just read this. You saw this post? Okay, great, yeah, so, and then I put that up because, I mean, honestly, like, I wanted to thank the all the healthcare workers out there who do grab people in hallways and whisper juicebox podcast into their ear, which happens a lot. And you think, Well, Scott, how do you know about that? It's because the Facebook group asks you when you're coming in. The private group asks you when you're coming in. How you heard about this? That group collects 150 new people about every three days. And on the intake forms, someone pulled me aside in a doctor's office and told me about it comes up five to 10 times every three days. And so I wanted to, like, put a thank you out into the world to those people who are spreading, you know, good information whispering in people's ears and everything. And the responses that came back in that post from other people talking about how they found the podcast, I found myself thinking, you have to understand, like I have to think about, I have to think about the podcast from a lot of different perspectives, and one of them is from a marketing perspective, and I see people out in the world, you know, trying to pimp their diabetes coaching stuff, and they're like, look, I got a review. Look, look how good bill did on my plan. That cost him $3,000 because I charged him 600 a month, and it took him a year to get it right. And like, you know, like in there, they use it as a review. And I think you. I wonder how infrequently they get those reviews, because I only see the posts every couple months. If I were to put up a social media post with a positive response from a listener, I could probably do it every four hours. And that's not about me. That's about it's about how well the podcast seems to work for a lot of people, and then the only thing that makes me think is I'm not getting it into enough people's hands, like if it works that well, or such a large percentage of people who intersect it, how come I'm not finding a way to help more people like that? It makes me feel badly. I know that sounds weird, but like good feedback makes me feel bad, but only on one level, and like that kind of marketing level, on a personal level, or my pride about what the podcast does, etc, show on that all makes me feel amazing. I didn't expect that much feedback in that post, and as I read through of it, some of it made me cry, like I actually read something from this one guy named Ricky, I think. And he was talking about the advice they got from doctors and how his kids life was going very poorly. And then one day, because they timed some stuff badly at a birthday event, his kid had to, like, skip having a piece of cake with everybody, because he was afraid he was going to stack the insulin. And that led him to look for other advice. And now he's talked about how well his daughter was doing, and that made me cry, like I was like, Oh, my God, I think I saved that kid's life, you know. And I try not to think about it like that very often, but every once in a while, like I let myself live in it for a second, because the truth is, is I do the same thing day in and day out. Like last night was Sunday, my family, my my wife and my daughter went out around one o'clock, and they're like, do you want to come? And I'm like, I'm gonna work. And then I got done at midnight last night, and I was working on something that may or may not turn into content for this podcast. I don't even know yet, but I need, sometimes I need motivation, like, you know what I mean, so I used your success to fuel my desire, if that makes sense, to keep going. I don't know why I shared that.
Barb 47:23
Well, no, I It's, I totally get it, and I, I have to tell you. So I had two letters to the editor published in the New York Times. Those are my, you know, little stars on my nice wall, and they were around covid. I think my first one was about six feet of kindness. It's a great little read. But anyway, I had read something a couple years ago that was dissing social media and how awful it is, and so they didn't print it, unfortunately, but I had written a letter to the editor saying, Hold on. You know, here is what social media has meant to me and my son with type one diabetes is that we can connect with a worldwide community who have the same condition that we do, who have tried multiple things that we learn from each other. I mentioned the juicebox podcast, and I thought, you know, this is to me, it is what I always bring up when, you know, particularly around parent groups, dissent, social media and, oh, you know, all the crap that's out there and the metaverse. And I said, I'm telling you, my life would be, it would not be nearly as fulfilling without the and particularly around type one the community that I have found on social media. So kudos to you. You know, I followed you when you were Arden's day. So, you know, oh, you're just reading the blog. That's how I first came into it was Arden's day, and so when this juice box stuff, explode it. You know, I'm sending it to my son and all this stuff, if anything, it's kind of overwhelming to me. Now, you know, the plethora podcast, I feel like there's not enough hours in the day, and so, you know, you pick and choose and listen to what's useful. But I truly think that talk about a toolbox. Scott, you know, you have the juicebox toolbox. I can't even say that quickly, juicebox toolbox.
Scott Benner 49:28
I started to make more content at first, because I had too many advertisers. And I was like, Oh, everybody wants to advertise on the show, but I only have this one episode every week. And I was like, I struggled with it. I was like, I asked my wife, I wrung my hands for six months, would people be okay with two? What if I put two up a week? Would that be too much? Would they upset? And then as two was okay, and then people during covid Were like, you could put up more, you know? And I'm like, Okay, here's three, you know. Here take three stories and a management on Thursday. I was like, you know? What? Am I doing? I'm like, do you know I have right now, I'm sitting on 70 episodes that are done and ready for you, but right right now, and that's constant for me. I constantly have a backlog of about 70 completed episodes. And I, you know, I get done interviewing, I'm going to have this experience with you 20 minutes from now. We're going to get done and I'm going to think I should just put barbs out tomorrow. Like, like that, can't sit and wait. Like, what a great story about blah, blah, blah, blah, blah, right? But then I realized, oh no, you know what? You thought that last week five times, when you recorded five times, keep going in order. Keep going in order. It's not I mean, I'm grateful that there's ads on every episode. That's nice and it's great. And I appreciate you all helping me send my kid to college and stuff like that. Like, that's all fantastic, but that internal feeling I have that this is this information, people need this information. Like, it has to get out there so they can hear these stories, so more people can have these experiences. And I can't just have one thoughtful story with Barb in May. You know what I mean? Like, there's got to be more, because the person who was lucky enough to hear you that when your episode came out, there'll be another person that comes along that needs your story, but it came out a year ago, and they're not going to go find it probably. So I need more. Like, I realized it just needs to be a faucet, and people can drink from it when they when they're thirsty, but the information needs to be flowing the whole time, and the information is episodes, and so it's a lot of work, but I think it's the best way to support people, because every because the truth is Barb, if I was in charge, I would just get you all together and I go look, listen to this series, then that series, then this series. And here's 100 stories from people with diet that have diabetes that will fill in all the gaps for you. Just go listen to those and you're done like you, and you don't need me anymore. There's no way to get people to do that. So instead, I just keep providing it and hoping that people trip into it and then get caught up in it, listen and get what they need out of it, because they don't know they need it until after they have needed Yeah. Well, well, yeah. Well, not even till they need it. They don't know they need it when they need it, they don't they didn't know they needed it till after they have it. And then they say, I wish I would have found this three years ago. I wish this would have been here when I was diagnosed, the woman who told me this morning that she found the podcast and listened to an episode and was like, Oh, that's good, and got what she needed out of it, but then didn't go back to it, and then years later, went back to it, and then had that sinking feeling of, oh, I wasted years of my life like that kind of stuff, so I just create non stop like you and I are recording today. I'm not supposed to even record on Mondays, but I'm looking at next Monday, and for some reason, I'm recording twice next Monday. So you're like, it's a draw for me. And I just, I feel very good about it, like I feel very good about putting the information out there and letting people tell their stories, finding new ways to tell the stories, finding new ways to pop the information out, because people's desire to hear things changes over time. Like there's always going to be people who like podcasts long form, but a 23 year old's not going to listen to a story with a 64 year old for an hour, right? Likely, you know what I mean. And so like, I'm designing, like, shorter form content for them and and like, I wish you could see this whiteboard here. If I was 10 people, I'd be putting out four episodes a day. I'd have so much content. And but instead, I just think, well, I'll get as much of this done before I burn out. You know what I mean this I can.
Barb 53:43
Have you ever thought about billboards on interstates? I don't. I don't know. It doesn't matter, just with your, you well, you talked about trying to reach more people, you know, just with the website or the the
Scott Benner 53:54
way you're going to reach people in this space is word of mouth. It's the only way it works, and then that person who hears about it has to hear about it either enough or be in a situation where they're so desperate that they're going to try a podcast to learn about their diabetes. That's really the truth. Yeah.
Barb 54:14
I mean, for personally, the OmniPod five podcast was was invaluable. I mean, I had no training, like, you know, and talk about insurance companies, you know, they couldn't figure out why I needed insulin and the OmniPod. It's just ridiculous. For like, you know, here we'll give you this, but we won't give you this that goes along with it. But that was the series that got me started, yeah, in my little you know, but
Scott Benner 54:44
everything comes with a trade off, so or time commitment that you don't know about, like that, OmniPod five Pro Tip series, which is just three episodes, started three years before OmniPod five was available, I started talking to the person that I worked with at Omni. Omnipodity pod. And I said, hey, when OmniPod five comes out, the biggest problem you'll have is if people don't know how to use it, like, right? They're going to need to know how to set it up. They're going to need to know how to use it because if they don't, you're going to slap it on them. My daughter uses an algorithm. I know that the algorithm, it's not magical, you know what? I mean, like, you settings have to be, right? Yeah, you need to understand some things. If they don't understand that, they're going to put on OmniPod five, their blood sugar's going to jump around. It's not going to come back like, you know, like Skynet is controlling it. And they're going to go, This thing doesn't work. And then they're going to go online and go, I tried OmniPod five and it doesn't work. I was like, so you're going to have to give people good information. Well, that's hard to get a company to do not just OmniPod, but it's not their job to as crazy as it sounds, to train you on how to use the device. That's your doctor's job. And we know the doctor isn't going to know about the pump and if they even know about it, we know they're not going to know how to set it up correctly, because if they did, they would have been able to help you with all your other stuff, which they couldn't help you with. So I have to have those conversations for years with my person about, like, I think this is important. We should actually take time and put together a thoughtful couple of episodes that'll explain things. And then in the middle of that conversation, she just went to another company, she left, and then the next guy comes in, and then I gotta start over again with, hey, you know, I know you just started this job, and you're probably overwhelmed and trying to learn your job and everything, but this is important, and I start over with him and and he's the type one. I don't know if he'd be okay with me sharing that, but I just did. He's a title. He did. He shared it. No, you don't know who I'm talking about. My content, not the person on the episode, right? Okay. And so he's like, No, I I think you're 100% right. And then he developed, he put his team on developing those episodes along with me. And then we must have spent, God, we must have spent six or eight months developing that content behind the scenes. Wow. And so the amount of time that went into it, when it all is said and done, I made about four cents an hour to make those episodes. Like, no kidding, it's, it ended up being a labor of love. Like, there was the money just, was not even, you know, it's just, it's just ad money. It's, it wasn't even, like a lot. But I was like, this is really important. Now, here's the trade off. You know, no one from, like, tandems ever been on my podcast. They don't reach out to me. They don't touch me because I look like I'm connected to OmniPod, but I say to them, I'm like, OmniPod just buys ads on this podcast, like I don't have another business relationship with them, like, you could come on and talk about your pomp. I'd love that, but doesn't happen. So then when you tell me the OmniPod five Pro Tip series was really valuable for you. I think, Oh, that's great, but I'm letting down people who are using control IQ,
Barb 57:48
yeah, you know, which is another great system. Yeah, exactly. But
Scott Benner 57:53
I but it's not my fault. They won't come to me like and I say it on the podcast once more, because I know that you listen, because they all, by the way, I know you're all listening. Most of the companies have someone tasked to listen to the podcast, actually. So it's someone's job to listen to my podcast, probably at every one of the diabetes manufacturers that exists. And so, like, they hear me saying it, I'm like, come on. Like, I'll talk about your thing. Like, let's go. And then they just never do it so, and I'm not picking on tandem, like, but like, there's other companies too who are just, they're scared to reach out because they think that I'm, like, attached to Dexcom. Like, I'm like, I finally, this year, got another CGM company to advertise. And I'm like, Well, maybe that will make them understand, oh, the
Barb 58:37
ever since, yeah, yeah, that, yeah, you're really lucky. You know, I equate what you're doing with my decision. I was in higher ed administration, so I worked for one college at a time, and a lot of times I wanted to be a high school guidance counselor so that I could work with all the colleges all of the time. Yeah, and be more useful, right? To that young woman who was a junior in high school who's having a hard time, but no, my job was to sell the one college, right? But I think the position you're in is
Scott Benner 59:09
invaluable. I hope I'm trying to do the best with it. I can, like, every once in a while I'll get crap from somebody online. It's like, you know, you take ads and I'm like, Well, I mean, I gotta, I can't. It's free, you know, I gotta eat right? And by the way, you, you know, you don't pay for it, like, you know, rock and roll, like it's free, listen to it, or don't, like, I don't know what to tell you, I actually hear people like, uh, there were two ads on that episode. I'm like, like, I wish I could leave reviews for listeners. Sometimes I'm like, It's not fair. You're allowed to leave a review for me. I'm not allowed to leave one for you, like, like, shut up. It's free. Skip past it if you don't want to listen to
Barb 59:47
it's so fun. Yeah? But hey, can I ask about your closed loop system?
Scott Benner 59:51
Yeah, but we got to do the Chicago thing. Which do you want to Yeah,
Barb 59:55
let me just ask a quick question. Have you? I've never gone that route. Out and part of it. DIY, have you ever right? Yeah, have you ever had folks? Well, no, because you're using the dash right.
Scott Benner 1:00:09
Arden uses dash pods with IEPs right now. Okay, yeah. And g7 g7 Dexcom, okay,
Barb 1:00:17
so there's no problems with warranty. You know, I get concerned about the regulations, and if I run into trouble, you know, I'm just sitting here by myself.
Scott Benner 1:00:29
What's your concern? Like say, I'm
Barb 1:00:31
used if you try something goes wrong, I guess I just go back. Goes wrong. How? You know, that's a good question, because obviously there's the online community to ask questions. But if I, if something happened to me, using that, there's nobody culpable except for me, right? I guess that's it. Maybe I don't have enough confidence in myself. Who do you okay, we can. We can
Scott Benner 1:00:56
move on. No, no, let's dig into it for a half a second. What is your concern that if something happens, there's no one to ask a question of, or if you drop dead, you can't sue somebody. What is it you're worried about?
Barb 1:01:07
Yeah, maybe the Latin a part of the latter. You know, when you just in terms of something comes, comes on, goes wrong, that, you know, there's but, yeah, it's just my, my laziness, more than anything to not look at.
Scott Benner 1:01:21
Listen, I'm not here to sell anything to anybody. A Do It Yourself algorithm is literally code that you download off the internet and build yourself into an app that controls your insulin pump and and speaks to your your CGM. That's it. You might as well have built it yourself with with popsicle sticks. It's yours. You
Barb 1:01:39
know what I mean? Yeah, and the dash pods are different from the classic OmniPod pods. Is that?
Scott Benner 1:01:46
Right? The arrows pods, the the original ones, yeah, I don't actually think they're going to be available much longer, if they even are any. So that's not
Barb 1:01:54
what you use. You use dash pods. Dash pods, yes, okay, I was going to give you my arrow spots, okay? And if
Scott Benner 1:02:01
your dash pods like, like, let's say you're using a like, a DIY system, and you fill a pod up and 12 hours later, it it errors. For example, you don't get the call OmniPod up until and have them send you another one. Yeah, right. You're in a different game. Now, if you're doing that, yeah,
Barb 1:02:19
and maybe that's more of what I think about is, you know, just having ready. I'm such a I always have backup supplies, partly because my son's on the same system. So I've always been backups. Oh, I forgot one thing Scott that I think is, again, the social media piece of this world is two situations where my son was in kind of an emergency situation, and once in England and once in Chicago, and both times it was because I reached out Online, people stepped up and it was solved. I mean, how often does that happen? He was in he was in England. Had was on business in England, they were still testing for covid. He unfortunately, it was at the end of the covid thing. He tested positive before boarding his plane home. So he had to stay for 10 days in the airport hotel, and he had not packed enough supplies. Okay, so he's in England, right? I'm like, Well, you have insulin, right? Yes, well, go get some syringes, put double mask and or get some delivered to you. They would not, because he didn't have an NH card, they he could not get syringes. So now I'm thinking, okay, eventually, you know, through reaching out online, we found someone. Did
Scott Benner 1:03:47
you do that? Where did you do that? Oh no, no, Scott,
Barb 1:03:51
I don't, I don't even remember, to be able to give you credit, but
Scott Benner 1:03:55
oh no, I don't mean that. I mean like I see it so frequently. It's fascinating how quickly somebody will step up and help somebody else. I mean, what?
Barb 1:04:03
How cool is that, even at the base level of, you know, here are the pros. That's huge. I think that's huge. Anyway, I had to share that because, you know, as the mom,
Scott Benner 1:04:15
yeah, no, let me say this, though, because I didn't say this when you were talking about the benefits of social media. Social media not different than anything else. It's just how it's wielded, right? I take the opportunities I have by having people follow on certain places, like listening to the podcast, or, you know, coming into a Facebook group that's now feel like, I think today, actually just went over 50,000 members. Like it's a responsibility, like, right? And then you can do what you want with it, like, it's almost like a gun. I can go hunting with it, you know, rob a bank with it. And so I've chosen to take this opportunity I have and try to do something good with it. And I know there's people who don't hunt. Who are, like, well, weird analogy, but I've never hunted either. I'm just saying it's all in what you do with it. Now, if, if I was a bad actor, I could look at those 50,000 people and be like, I wonder how many different ways I can get money out of these people, right? Like, instead, I just go look, here's the advertisers. If you can support them, that's great if you don't have a need for it. Like, right on, like, I'm not asking you to, like, get a Dexcom to help me. I'm saying, if you're gonna get a Dexcom, could you use my link, right? Like, that's all I'm saying, and that helps support me and keep me going. Now, there's, you know, times when you do something else, like, we're actually considering doing a cruise for listeners right now. I
Barb 1:05:38
saw that. Yeah,
Scott Benner 1:05:40
I think that might happen, actually. And you would think, Oh, here it is. Now he's gonna cash in. Well, I just had a meeting with the person who's running it, and it turns out that after this whole thing's over, and I spend five or six days on a ship and two days flying in and out and everything, the likelihood that I will make eight cents is very little like, hopefully the cruise will pay for itself. And I was like, All right, whatever. It's fine. You know what I mean? Like, I, you know, it's like, that's like, it's a thing people seem to want, and I think they would like it, and so I'll do it. But if you think when it's over, I'm gonna be like, Scrooge mcducking in a pile of gold, you got that wrong, you know? Like, I don't want you think I'm not bad off, like, I make a I make more than a reasonable amount of money to do what I do, like, but it's not like, there's not like, millions of dollars falling out of every like, like, pocket when I put my jacket on or something like that. But I think people, I do think people think that sometimes,
Barb 1:06:37
no, I and I, you know, the people want to be around those you know. Look at the adult. I'm sure you're familiar with the camping camps for adults, right? The
Scott Benner 1:06:50
I forget, but yeah, and,
Barb 1:06:52
you know, I even asked my Endo, actually, the first three endos I had here, could you give my name to all of your other adult type ones to connect with me. Yeah, you don't have to give me their information. But can you give them mine? Because I really want to start a group and I don't know how to reach people. Can't do it. No,
Scott Benner 1:07:13
it's It's HIPAA, and they didn't want to do it themselves. No one wants to be involved in anything.
Barb 1:07:18
We had a great school nurse when we moved to Ohio, and my son was in eighth grade, and she took it upon herself to put together a group of T 1d, families. It was fabulous, but she was a registered school nurse. You know, now they contract with all kinds of folks, but she she she made a huge difference to us when we made the move and were able, and we still have contact with many of those families. Yeah, I think, I think people want to be around others who get it. You know, it's like sending your kids to T 1d, camp, right? No, it's,
Scott Benner 1:07:54
it's terrific. And somebody's got to, you know, make that overture, and make the and build the thing. And you have to, you have to realize, like, when you were said, you wrote, you read the blog, like I didn't have, like, I wrote that blog for absolutely for free for years, like nobody, I didn't have an ad. Like nobody gave me any money. I just thought it helped people. And I was, I had some free time, and I thought, well, this is good. I'll do this. You know, I trust me. I know plenty of people. You said something nice about the podcast earlier, and it stuck in my head like I didn't say it out loud, but if I would have listened to people back when I started the podcast, it wouldn't even exist. Like I had prominent people in the diabetes space say you cannot tell people how you manage your daughter's diabetes, like they know how to live well, but they don't tell other people about it. Instead, they write you blog articles about how scary and sad it is, and we're all here together, and I've got your back and like all that, like not unreasonable stuff, but it's all like preying on your emotions. And meanwhile, that person's running around with a five, four, a, 1c, and could exactly tell you how to do it, and won't open their mouth and say one word about it, you know? And so because they don't have the balls to talk about it out loud and and I get that like I even understand not wanting to do it, but you know, you don't realize there are some people in this space that you think of as like Mary Poppins, and they're not Mary Poppins. It's just interesting. And I'm sure there are plenty of people who don't like me, and that's all well and good. All I can tell you is that I get up every day, I make this podcast all day long, and I see how many people it helps. And it's my goal to make it bigger. It's my goal to make it bigger because I think it'll help more people. I There's no space for me. I can't get any more ads like, you know you mean like, I'm I'm capped out as as far as I think how well I can do with this like, I think it is what it is now, and now it's about keeping it going and meeting more people and helping more people and spreading the word so that I can, you know, shut this microphone off one day in the future and feel like I did as much as I could. So that's what I'm shooting for here. Well, thank you. No, please. You have to thank me. Everybody's there's people paying me. You don't have to worry about i. Yeah, it even makes me feel weird to hear you say, thank you. And I don't know why, because I genuinely, I don't want you to or need you to. I just I don't want people to feel the way I felt when my daughter was diagnosed.
Barb 1:10:13
Well, you're just a brother by another mother, Scott, because you know, we're probably related.
Scott Benner 1:10:19
You think so,
Barb 1:10:21
given my extended family. Probably, you're
Scott Benner 1:10:23
probably related to everybody. I'm related to you and Genghis Khan. I think you know so exactly, oh my gosh, is the thing in Chicago? Let's finish with that. So there's a study in Chicago. I
Barb 1:10:37
can't remember where I saw this. It was on. It may have been on your page, but someone mentioned this study. Never heard about it. See, I was a person who when my son was diagnosed, I was really put off by the fact that there was no questioning about anything. And I thought, How in the heck are we ever going to figure out where this comes from if we don't ask those newly diagnosed any questions about history or environment. You know, I just thought there could be somebody out there who could come up with something. So anyway, when I saw this study, it's called precision genetics for type one diabetes, they are looking to identify genetic mutations that drive T, 1d Okay, and they, I don't know if you've heard of these mutations, they say T 1d is a frequent feature in patients with mutations. And I don't know what these means, a, i, R, E, F, O, x, p3, and stat one. Recent studies suggest that T, 1d patients with certain mutations may be able to have their disease reversed with targeted therapy. So there's studies trying to accelerate this precision medicine. And it reminds me of cancer treatments. You know how they're doing immunotherapy? I don't know if you know, but they're trying to do more targeted treatment based on the kind of cancer you have, what it reminds me of so t1, ds apparently have certain mutations, and they're trying to identify that. What's the name of the study? It's called precision genetics, or type one diabetes. The website is precision T, 1d, all small letters. Dot, u ofchicago.edu.
Scott Benner 1:12:24
Okay. Precision genetics is an emerging field that aims to tailor medical treatment to individual genetic profiles. In the context of type one diabetes, precision genetics focuses on, hold on, too much scrolling. It's going faster than I can read. On understanding the genetic factors that contribute to the onset, progression management of disease. Here are some key points about precision genetics for type one. This is from chat GPT four. Oh, yeah, predisposition, identifying markers, genetic personalized risk assessment, tailored treatment plans, prevention strategies, research and therapeutic development, challenges and ethical considerations, etc. Yeah. I mean, it sounds like a like something that's being researched, and they're trying to figure out if they can use this precision genetic technology to help people with type one so exactly
Barb 1:13:11
and so, you know, I'm always looking for things where this huge family of mine with this obvious genetic disposition to type one could be useful. So, you know. So my son and I have done it. It's very easy to do. They send you, there's an interview, a very short interview, where they answer questions and tell you about the study and blah, blah, blah, and they send you a sample kit to collect saliva. It's done through a saliva collection that you mail back and that's it. There's nothing you do in person. I mean, I did go out to Boston to Are you familiar with the UMass program? Denise, I went out to Boston and tried to get into her stuff. That's an interesting study too. It's using a long term. It was a drug that was used to treat TB. Does this ring any bells at all? So, oh, it's fossman lab. Does that ring a bell at all?
Scott Benner 1:14:10
Yeah. So she was on the podcast years ago. And listen, she's one of a lot of different people going after a, you know, a specific idea, but right at some point, like, I can't, I'm glad people are out there doing research, but I can't have every person out there who's like, I wonder if this is the thing. I'm going to spend 25 years trying to figure it out. Like, if you figure something out, let me know. But like, I can't, I can't talk,
Barb 1:14:35
no, and she's been going at it forever. Yeah, right, right. She's a great, yeah, really. But anyway, I don't know where this position obviously, I'm hoping that any work a research group like this comes up with could help in perhaps identifying more markers, or, you know, any foresight I think is valuable. Again, knowledge is power, right? So anyway, I don't. Know if people know about this, but I thought it would be worth sharing for anybody who wanted to get in on the fun. Thank
Scott Benner 1:15:06
you. Listen. We started off with your microphone and finished well with your story. So I think this was a good use of our time. Yeah.
Barb 1:15:13
Can you hear me? Testing, hello, hello, Barb. Oh, I lost you. Oh,
Scott Benner 1:15:20
it's that. It's that Ohio internet, apparently, yeah, Dave Chappelle is using all of it up, probably,
Barb 1:15:26
yeah, they're putting fiber out in front of my house as we speak. So, oh, no kidding, very It very well could be,
Scott Benner 1:15:34
just gonna say, It's possible we're about to get cut off. But hold on one second for me, we're done. But let me say goodbye to you privately Hold on a second.
Prolonged hyperglycemia can lead to serious health problems and long term complications. Learn more at Medtronic diabetes.com/hyper, this episode of the podcast was sponsored by Medtronic diabetes. The conversation you just enjoyed was brought to you by us. Med, us. Med.com/juice, box, or call 888-721-1514, get started today and get your supplies from us. Med, a huge thank you to one of today's sponsors, gvoke glucagon. Find out more about gvoke hypopen at gvoke glucagon.com. Forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juice box. If you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold 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 beginning 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 bold beginnings in the menu when you support the juicebox podcast by clicking on the advertisers links, you are helping to keep the show free and plentiful. I am certainly not asking you to buy something that you don't want, but if you're going to buy something or use a device from one of the advertisers, getting your purchases set up through my links is incredibly helpful. So if you have the desire or the need, please consider using juicebox podcast links to make your purchases. Thank you so much for listening. I'll be back soon with another episode of The juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrongwayrecording.com. You.
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