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#1170 Bubble and Fuzzle

Jeannie is 71 years old. She was diagnosed in 1965 when she was 12. A former nurse who loves diabetes camps.

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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 to episode 1170 of the Juicebox Podcast.

Today on the podcast I'll be speaking with Jeanne who was diagnosed with type one diabetes in 1965 at the age of 12. Jeannie is a retired nurse who loves helping people. And today we're going to talk about the differences between diabetes back in the day and today, we're going to talk about diabetes camp community and so much more. 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. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. When you place your first order for ag one with my link, you'll get five free travel packs and a free year's supply of vitamin D. Drink ag one.com/juice box. 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 juice box at checkout

this episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org and find them on Facebook and Instagram touched by type one is an organization dedicated to helping people living with type one diabetes. And they have so many different programs that are doing just that check them out at touched by type one.org. 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. Us med.com/juice box are called 888-721-1514. Use the link or the number get your free benefits check it get started today with us med this episode of The Juicebox Podcast is sponsored by the ever since CGM. And sure all CGM systems use Transcutaneous sensors that are inserted into the skin and lasts seven to 14 days. But the Eversense sensor is inserted completely under the skin lasting six months ever since cgm.com/juicebox.

Jeannie 2:39
Good morning. I'm Jamie Hickey. I'm a diabetes nurse, retired. But I was diagnosed with diabetes in 1965. And have been very involved with camps for type one diabetics and families since 2003.

Scott Benner 3:01
Alright Jeannie, so

Jeannie 3:02
that's why I'm here today.

Scott Benner 3:03
You were you were diagnosed and 65 How old were you then? I was 12 If you whisper they can't hear you. But I'm just gonna repeat it loud enough. Don't worry.

Jeannie 3:15
I know. Yeah, I was I was 12.

Scott Benner 3:17
Well, we can do the math easy on this one, right? Because I know that's the scary part. Yeah. 40 years is 2005. So 50 is 2015 to 60 is next year. And then you were are you 71 Yes. Give me Jenny. Hey, I am a math wizard. When it comes to 10s I can do the 10s No problem.

Jeannie 3:36
That's because we have diabetes. We have to be math strong.

Scott Benner 3:40
Well, Jeannie, do you know I don't you don't I was gonna say Do you know I don't have diabetes? Right? It's your daughter? Yeah. My daughter Arden who is going to be 20 this summer. Wow. She was diagnosed when she was two.

Jeannie 3:53
That's it. That's a That's a tough place. Terrible two's

Scott Benner 3:56
not a great deal of fun if you're wondering. So yeah, you're diagnosed in 65. At 12 years old. I'd like to pick through it just for a couple of minutes. I want to get to the real reason you're here. But you know, first. I mean, are you regular an MPH or is that still like beef and pork?

Jeannie 4:14
I did. I started on regular and mph after I went to camp because my parents took me like six or eight weeks after diagnosis. I went to camp. There was a doctor up there and we got a letter from him saying he was pleased that we were already on twice a day injections.

Scott Benner 4:33
You were you were in the future already.

Jeannie 4:35
Yeah.

Scott Benner 4:37
What do you remember about that? Do you remember anything about it is a long time ago, but what was it like?

Jeannie 4:43
Well, I remember you know, it was definitely outdoors camp was and you know, walking down the hill with my cup of urine sitting in front of a fireplace and I guess it was raining so we were roasting marshmallows and having some more words. And I thought, oh, I can do this. I can have a similar, you know, the chocolate marshmallow. And so it was already a quick opening and then just having other kids there. But back then you didn't tell people because they didn't need to know. So

Scott Benner 5:19
it offered you a sense of normalcy right away?

Jeannie 5:21
Yes. And just companions, who understood, didn't have to explain thing. They understood

Scott Benner 5:29
your day, what was your day? What did it look like having diabetes when you were 12 and 65.

Jeannie 5:36
You know, I really don't remember other than I remember sitting in the bathroom, trying a united drawn up my insulin and trying to get the needle into my thigh, sitting there and aiming and bobbing the needle and just putting it off and having to talk to myself saying, just get it over with, and then it's done. And you've got the rest of the day. So it was, you know, I'm sure that a lot of kids did that before the auto injectors came out. And now everybody's put on a pump so quickly. But my mom kind of measured my food because there was the exchange diet, where you had, you know, one or two servings of this one or two servings of that. And that was what you're supposed to eat every day. The fat you're supposed to have so much fat every day. There's a joke at camp about all the Pat's of butter, they were underneath the tables,

Scott Benner 6:33
because people were like trying to get their groups together, the fat the carbs was there. But what do you remember what the groups were? They wanted you to do

Jeannie 6:43
fruit milk, starch, protein, vegetable

Scott Benner 6:48
that, just like that, and then your doctor made adjustments to the amount of insulin you used. Where did that not really happen very often.

Jeannie 6:56
It doesn't happen very often. Because remember, we just did a urine test every morning. I really don't remember doing one later in the day. five drops of urine 10 drops of water drop in the tablet, and I still have my test tube. You dropped it all in and then you watched it bubble and fuzzle up and you get a color

Scott Benner 7:17
bubble and yeah, I gotta tell you right now bubble and Fazal could be the name of your, your episode Genie. That was great. Oh, jotting that down.

Jeannie 7:29
And then what's fun is fun, or just timewise. You know, you'd take this colored test tube and you'd move it across the color scale that came with the box of tablets. So you would have this sliding scale as you got the color and you would know whether you were negative trace or four plus on the sugar. And at some point in time they started saying if you are then you can add this much more of regular that's what

Scott Benner 8:00
I was gonna ask. Yeah, in the beginning it was just do the test, but at some point it became do the test and if it's a certain color, you can add a little insulin. The podcast is sponsored today by ever since CGM. Ever since cgm.com/juice. Box. we've ever since there's no need for frequent sensor changes, no more sensors falling off, fewer failed sensors and less skin irritations and that means more comfort with ever since you only need one sensor insertion every six months, and there's no need for constant sensor changes, which means less hassle. There's also no need to carry extra sensors with you. So that's less stuff to worry about. And you can say goodbye to unexpected disruptions from sensors falling off or being knocked off. Because the ever since CGM is implantable and the sensor stays comfortably in place for six months. The Eversense sensor is incredibly durable. And of course that means fewer frequent unexpected sensor errors that happen before the end of the suggested wear time. But what do you really want to know about accuracy? The ever since CGM performs exceptionally over its six month life. If you'd like more details or are interested in getting started, use my link ever since cgm.com/juicebox. I'll be telling you a lot more about ever since this year, so make sure you pay attention to upcoming advertisements. There you'll learn about the implantable sensor, the smart transmitter and their mobile application. The ever since CGM lasts up to six months eliminating the hassle and discomfort of frequent sensor insertions. Simply put, it makes managing your diabetes so much easier ever since cgm.com/juicebox. I'm starting to take it for granted. I am I'm starting to take for granted that Arden's diabetes supplies just show up. But they do because of us med us med.com/juice box we get an email It says, you know, do you want to refill your order? And you click and say yes. And then it just comes to the door. There's not a lot to say when things are done well yeah, I could stand here and tell you us med carries Omnipod five Omnipod dash Dexcom G seven G six tandem x two libre three libre two. I mean they've got there's so much. I'm not even listening at all I should be. I will at the end. I promise. My point is this. It just works. And we don't talk about things enough when they just work. Us med.com/juice box or call 888-721-1514 Get your free benefits check and get started today with the white glove treatment offered by us med us med here's what they got. FreeStyle Libre three and two. They got it. Omni pod dash. Yes. Omni pod five, aha. Tandem. Yep. What about? Have they served a million people with diabetes since 1996. They have better service and better care is what you're going to get from us med but you're also going to get 90 days worth of supplies, and fast and free shipping. They carry everything from insulin pumps to diabetes testing supplies, the latest CGM and they accept Medicare nationwide. Find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice. Box or call 888-721-1514. Yeah, yeah. Because back then all you were doing was trying to cover meals, right? Like you had to eat on a schedule to I would imagine times a day.

Jeannie 11:39
Right? scales. And then remember, it was NPH. So you were supposed to have an afternoon snack, and a bedtime snack because of the peak of NPH. Yeah, where the insulin hit. Yeah. So even if you weren't hungry, you had to have a snack. And boy did that carry over? Many, many, many years. Even when people were no longer on NPH they still thought they had to have a bedtime snack. They had to eat when they didn't want to. Yeah,

Scott Benner 12:08
it was so ingrained in them by the time that the the insulin kind of leveled up and wasn't necessary anymore. They were still doing that thing. Yeah, Scott, every day starts with the smell of urine and ends with a snack. You don't want

Jeannie 12:21
to go there you go. Did you have to do that with your daughter? Oh, Arden

Scott Benner 12:25
started with love Amir and nice Novolog. Those were her two first insolence. Yeah. So I mean, after that, we had a meter that looked like it came out of a bubblegum machine. And nothing else. That was what we had.

Jeannie 12:41
So meters were about our, I guess, test strips or about seven the 879. Then you had a strip that you could stick into a meter.

Scott Benner 12:51
But they needed like a ton of blood, right? Yeah,

Jeannie 12:56
it was a good drop. And we were supposed to you weren't supposed to squeeze because they felt that it got more serum into the blood and it would change the value of that blood sample. So we were not supposed to squeeze. So that meant you might had to hit it pretty hard.

Scott Benner 13:11
And then just sit there holding your finger upside down letting the blood drip out of it.

Jeannie 13:14
Yeah.

Scott Benner 13:15
How much time do you think in the morning was spent with your diabetes back then? What

Jeannie 13:21
a question. Oh, probably a good 20 minutes. Half hour. Yeah,

Scott Benner 13:27
it sucks. Especially if you're in a hurry. Or if you're, you try you can't sleep in. You can't just you know, you can't just jump up and go. Yeah, it takes a lot. It takes a lot away from from your ability to move around. So you growing up with this. I mean, you really just once you get over the I can't put this needle on my leg. Once you get over that. You're basically on your own. Are your parents very involved?

Jeannie 13:50
I mean, yes or no, they mom didn't you know ask every day what my urine sugar was. But she was helpful, very helpful in getting a meal. Planning the meals and getting the snacks and stuff. I left home when I was 16

Scott Benner 14:10
went to college where you went to college and you're 16 Yeah,

Jeannie 14:13
right. About a couple of weeks after I graduated from high school. You

Scott Benner 14:17
graduated from high school and time to start college when you were six. Are you very smart, Janie?

Jeannie 14:22
Well, I think I turned 17 while I was gone that summer, okay, but no, no, I'm not that snow.

Scott Benner 14:26
I thought maybe you were. You were like, oh, gotta get her off into the world where she could do some good. I wanted to start med school. Did you What did you end up going to college for?

Jeannie 14:38
pre med. You did?

Scott Benner 14:39
And did you finish? No.

Jeannie 14:41
I after a year I said, I don't like all these classes that I have to take. So I came home and worked on getting my AAA and met a school nurse and she finally said Jeannie, go to a hospital program and become a nurse. You want people So I did, and I've loved it.

Scott Benner 15:03
Oh, that's amazing. How long did you do it for?

Jeannie 15:07
Well, let's see. I graduated from nursing school marriage in Oakland in 75. And then I just retired in 16. You just retired? Yeah. Yeah. 16 So like, six years ago, but I still do a lot. I'm still very active with the type one community. Yeah,

Scott Benner 15:28
I don't want to make you feel bad. But I was for 1975. You little rapscallion. I'm old now. So what are we talking about?

Jeannie 15:39
I don't feel old. And I hope you don't either.

Scott Benner 15:41
My shoulders a little sometimes. But actually, if you're if you're actually asking me, I feel so much better today. In January than I did. Last year. In January, I started using a GLP medication just for weight. Initially, it was for weight in March. And this morning, when I got on the scale, it told me that I am 43 pounds lighter than I was the day I started to march. That

Jeannie 16:06
is wonderful. There are so many people who their prescriptions stopped because the medication is not available. There's a woman that I'm I know, in one of the support groups. She couldn't get it anymore.

Scott Benner 16:17
Yeah. It's going to be very, very widely used. They need to ramp up and keep ramping it up. My daughter who is 20 is using just point two five of ozempic a week. Wow. And it brought her hourly Basal from 1.1. To point seven. Yes, her insulin sensitivity went from one unit moves her 42 to one unit moves her 63 Isn't that wonderful? Yeah. Yeah. And I my calculations tell me she's going to use 11,000 fewer units of insulin this year.

Jeannie 16:49
Wow. The math wizard.

Scott Benner 16:51
That's what I did earlier. I just remembered it. So. But seriously, the the impact is crazy. I've got a lot of people coming on the podcast this year who are experiencing exactly the same things even one little girl who full blown type one for three years who now looks almost Lada because of starting I think we go V for weight loss, which is just those Empik. Yeah, it's interesting, but they're figuring out all the way back from Hey, Jeannie, just shoot this in the morning. And if the box is a different color, you can use a little more to a quarter of a milligram of this once a week will be you know is dropping. I'm not saying it would work for everybody obviously, but But it's going to drop my daughter's insulin sensitive or her insulin needs that much anyway, and it's impacting other things. And

Jeannie 17:39
for a lot of people, it's the food, you know, the last longer you feel fuller sooner. And so it's just easier to start backing off on those extra calories.

Scott Benner 17:51
Yeah, huge difference per eating is definitely different. But I will tell you that the insulin needs changed in the first week. So immediately, yes, even I was told by the endocrinologist that helped me, you know, scowling when you start this, you're not going to lose weight right away. And I was like, okay, she's like, this is a non therapeutic dose of this, it takes a month for it to build up. We're just getting your system used to it. In four or five days, I lost four pounds. Oh, I think you're gonna see people being supplemented for GLP almost the way you see people's supplemented for their thyroid hormone. Yeah.

Jeannie 18:30
And so you so you're just making me realize that there's going to be a lot more people at camp this summer youngsters? Yep. Well could be on it. It first

Scott Benner 18:39
the families that I mean, the insurance isn't covering right now you have to figure out a way to get it or pay cash for it. Right, we're very lucky in that Arden's dose is not going to rise. And so, you know, for us, what is a reasonable cash outlay for the entire year, we're gonna be able to impact your health this way, because a pen is gonna last her forever. So wonderful. Yeah. That's great. That's terrific. It's amazing how it keeps going, how far we've come, of course, and, and I think you've make these advancements, because of community backing. Right, and to really to bring it right back to you. If you've been going to these, you took your experience at camp, and which obviously led you on a good path. And you've been helping other people with this, you know, throughout your life through nursing. And now, you know, staying with community after your retirement from nursing. I don't actually see that as being much different than me sharing a story about my daughter using point two five of those epic. Exactly. You know, I think it's the same thing actually. Tell me more about it. No, about what more about how you got involved with people, and what you got out of it, what kept you doing it and what you think it's bringing to them.

Jeannie 19:52
I guess one of the things I'll say about myself is I'm a first budget, I'm a fixer. I have a good friend who's a teacher and she's all I always say, what would you do? And I'm always saying, Whom have you thought about this? Have you thought about that? I share what I've heard from other people. And I challenge people to think about it. And to me, that's one of the exciting things about having type one diabetes is that we're pushy. We're asking, we're figuring out, you know, just because FDA doesn't say that you can do it, if it works better for you, dad, gummit, do it, try it share the idea. You just may help the next person you talk to make a little bit of their diabetes a little bit easier. We've got choices. But you know, you go to the the endo or the some of the nurses and they open the book. And if it's not in the book, then you don't talk about it. Yeah. But, but that's the fun thing of community, you know, everybody's pushing that. So that whole, we're not waiting, you know, what can we do? To make my life a little bit easier? And that, to me is the fun? I love it.

Scott Benner 21:09
I'm happy to do because there's an argument, right? You know, you'll hear me at any point in time, I'm not shy about pointing out that. Generally speaking, clinicians are underwhelming as far as their value for people using insulin. Oh, yeah. Yeah. And as a matter of fact, I have two concurrent series that are going on right now. One is called Grand Rounds, where myself and Jenny Smith, Jenny is a CD. You know, Jenny, right. She's had diabetes for like, 35 years, we're talking directly to physicians about what they need to know and what they need to be doing. The series was built around feedback from a Facebook group with 45,000 members in it. I went to them a year ago, and I said, tell me, you know, what you wish the doctors would have said to you, and we compiled 86 pages of answers, pare them down to, you know, took out the duplicates, basically. And then Jenny and I went through them together while we were recording. And we built about a 10 part series, using the people's questions. And then she and I are having these 45 minute hour long conversations on each topic. The idea is we're delivering them to doctors, but it's also incredibly valuable for patients. Because they can say to themselves, well, if my doctor is not offering these things, I know, these are the things I need and deserve. Even if I'm not aware of it. This thing's telling me that yeah, through having those conversations, I started asking doctors to come on. Because my first idea was all let them tell me why it is they don't know more, you know, and what it turned into was a group of clinicians willing to speak anonymously, Jeanne, I actually change their voices, I do a voice altering for them. So you can't tell who they are. They don't use their names. And they are telling us about all the things that they see at their jobs. And so far, I've talked to an ER nurse, a bedside nurse, an in hospital inpatient pharmacist, a human resources professional, I've talked to a an actual CDE. And these people are, they're just spilling their guts, about what's happening in these these places, and what they don't know and what everybody doesn't know. And it's as much as I feel like I knew it already. To hear someone say it. It's different. You know?

Jeannie 23:35
Oh, I agree. Yeah, I'm going to be doing a talk Wednesday, the JDRF talk, and it's what is the CDE do? And it's like, well, so all of these very many people can become a CDE. So he's an exercise physiologist, going to help you with your insulin to carb ratio? Not necessarily, right. So you've got to try and figure out what, what, what CDE Do you want to help you work? What are your problems? It's just the the variety. And there's, you know, every doctor, every hospital worker out there has their own interests. And it's finding someone who meets your challenge ability. Who's willing, that's where I got started when I was working in the ER, is my co workers would say come talk to this person. Okay, you know, what brought you in here? What's going wrong? Have you thought about this? Have you thought about that? Challenge your doctor about this? And so they finally kicked me out and told me to go find a diabetes educator job.

Scott Benner 24:52
Can I ask you, because I ask of all the people in these that I'm having these conversations with? Why is it so difficult, or why is it so on? reasonable for us to expect a nurse in a hospital to understand how insulin works.

Jeannie 25:05
Because we're complicated people type one diabetes is so complicated. I mean, there are even endocrinologist that don't like type one diabetes, because you can't fix it. You're constantly juggling thinking we doing? You know, did you exercise today or not? Are you stressed? Did your cat wake you up overnight, and so you slept badly. There's so many variables that change our day. And it's almost too much for some people to feel comfortable with. And

Scott Benner 25:41
so it's not it's not taught in nursing or medical school, like nursing school like for I mean, I have a day or a page, they usually tell me when I asked them where you go. But they're also trying to learn everything. And so that's understandable. My question is, after it happens over and over and over again, why does it not get retained?

Jeannie 26:00
Again, I think it's because of the variability. If I talk to your daughter, her practice this is with herself, are very different than mine. I've got people who you may know a Jessica, who is very much into exercise. And the way she handles her insulin is very different than what I need to do to handle my exercise. I just got off the bike and what's my sugar, my sugars, okay. So things are changing so much, Scott. And so quickly, we didn't use to have our blood sugar on our watch. And now we're constantly aware of it. And so we're constantly thinking or, I shouldn't say that. I am constantly thinking some people don't want to think. But then again, with my loop, I don't necessarily need to think about what my blood sugar is because I know it's going to be pretty darn close to where I want it to be.

Scott Benner 26:54
I find that the do it yourself algorithms. My daughter is using Iaps right now, but she used loop for a long time with Otto Bolus branch of loop. Okay. Yeah. I find that with very good settings, a firm understanding of you know, your carb ratios and how to, you know, yes, count your carbs or bulk Bolus, specifically, well, good timing with your insulin. You can generally expect that thing to keep you under 180. And above 50. Oh, definitely. Yeah. And 50 Once in a while, but most of the most of the time she sits between like 80 and 110. Yeah, yeah. It's really something.

Jeannie 27:34
The simpler you keep your the simpler. You keep your life. Yeah, right. Exercise. Don't exercise. Go to a party. Don't go. It's the pumps that really help. Yeah.

Scott Benner 27:45
I'll break your brain for a second. Yeah. So I know. You don't know me that. Well. I know. Somebody drove you to me, Stephen. Yes, introduced us. But I have at this moment when you and I are speaking over 1100 episodes of this podcast are recorded. And available. Yes. Been out for 10 years, right? Yeah, I have been recently feeding the podcast into AI, I guess is the simplest way to ask it. So while you were talking just now I chose an episode of this podcast. That is myself and Jenny Smith. And we have a we're having a conversation just like you and I are but we are specifically talking about how to figure out your insulin to carb ratio. Now we never like it's not bolt. It's not a bullet point conversation. It's just the way you and I are talking right now. I just asked that episode through AI. I said, How do I calculate insulin to carb ratio? That's all I asked him. It told me to calculate your insulin to carb ratio, you can use the 500 rule mentioned in the podcast transcript, here's how you can do it. Number one, determine your total daily insulin dose, which includes both Basal and Bolus insulin, take the number 500 and divide it by your total daily dose of insulin. The result will give you an average insulin to carb ratio. For example, if the result is 16.6, your ratio would be one unit of every of insulin for every 16.6 grams of carbohydrates. Keep in mind that the 500 rule is a starting point vial. And that's it. That's me asking a computer that has listened to that episode of the podcast to come up with that idea. Okay, that's where this stuff is headed. Instead of you having to like there's going to be a time where you can go to a web page and say, I am 150 pound male who is moderately active. What do you think my total daily insulin is? And it's gonna give you a range of where to look for your total daily insulin.

Jeannie 29:40
And that's like the eyelet pump. Yeah, the beta bionics eyelet that's all they want to know your weight. Yep.

Scott Benner 29:46
It's all it's doing. Yeah. So what I learned was, like, it makes me how do I want to put this? I wish that every conversation you've ever had with a kid or with somebody to camp or another adult with type one diabetes I wish you recorded it. I wish we had it. So we could feed it into that and say to it, what are genies Rules for Living well with type one diabetes, because believe it or not, it would come back with a comprehensive list that sounded like you wrote it. It's instant, fascinating, I am working, that's going to be the last thing I do in this space. Before I leave, I'm going to leave a computer behind for people to ask questions to.

Jeannie 30:27
I know my Endo. When I saw her, she asked me, you know, we were talking about having best practices or good ideas, or, you know how to wonderful tips. And there should be a list of wonderful tips. And that's, I think what you're talking about,

Scott Benner 30:43
it's not only going to be able to answer every one of your questions that you can imagine, but it's going to be able to take the information that it knows and tell you what questions you should have. Just in case you don't even know which ones to ask. Wonderful. I'm telling you. It's the it's insane, it will end but it all it all comes down to having recorded making data out of these conversations, because it just occurred to me one day, I started saying it like this. So I have this, I have this big Facebook group, right? It has 45,000 People with diabetes in it, it adds 150 new people every four days. Wow. Every day, there are about 100 to 125 new posts that generate over 8000 comments, hearts and likes every day. And one time this person asked a question. And they said, you know, they asked it, it's a pretty basic question. And someone kind of came in and said, you could search the group for that. And I stopped them. I didn't slap their hand. But I came in, I said, Oh no, you don't want that. You don't want somebody to start searching the group because the group is a living organism. And if people stop interacting in it, then the group dies. And then all the information inside of it goes away with it. And I found myself thinking personally, it's a shame because every question that is ever asked, this group has been answered in that podcast. And they just don't know how to get to it. And then one day, I was listening to an an artificial intelligence expert talking about how they're going to use AI in the future for something. And I thought I could do that with the podcast, that would work. And I know that this is like a generation beyond what you probably think about when you you're thinking about computers. But trust me, I'm going to take community and turn it into actual value for people. beyond what we've done here so far, exciting. It's going to be really exciting for people, I mean, just try to imagine being able to sit at a browser and tell it, I just went on an insulin pump. I weigh this much weight, I'm 15 years old, I get Yes, I get my period. And please give me my settings. And it tells you here's the range to put this, here's the range, but that and everybody just goes in, puts the low range, adjusts it up, gets it to where it needs to be, and they're on their way.

Jeannie 33:02
And then you've got your week before the period. Yeah, a week of your period. And then you've got the Friday night basketball game with being jumping up and down.

Scott Benner 33:14
Yeah, but but but gee, those people are going to be on algorithms. Yeah, it's gonna be different, right? Like, it's a bad week, before your period is going to go from, what 15 years ago was. You know what blood sugars in the 250s spikes into the 300 stuff? You couldn't get down for days? Like that kind of thing? Like, that's gonna turn into I had a 180 blood sugar for a few hours today.

Jeannie 33:39
Yeah, yeah. Maybe that'll be that quick part of AI learning. So that the pump is aware of the calendar. Yep. aware of. Okay, we're starting to see some high blood sugar's calendar. Ah, let's raise the basil a little bit.

Scott Benner 33:58
One of the most exciting things somebody has said to me on this podcast, it's very forward thinking. But he said, Imagine an algorithm that was also location based. That knew that when you were a pizza parlor, a, your insulin needs were greater than when you were a pizza parlor. B. Oh, wow. Yes, yes. And then the next time you're at B, you can tell I'm having two slices of pizza. And it will actually remember what it took last time to do it and and try to mimic it. That's not crazy. With the technology that exists right now. Yeah,

Jeannie 34:35
or just to be able to say, Hey, I'm driving to the park. Yep.

Scott Benner 34:40
Well, that's it. Yeah. Just just to literally be able to pick up your phone and say, I'm leaving now for the park. Yeah. And then the algorithm can experience what you're doing. And then see what happens. And then maybe the third or fourth time you say I'm leaving now for the park. It'll go she's going to the park. I know what to do here. You need somebody to develop that. But it's not crazy. And I guarantee you it comes through the community way before it comes to a company. And

Jeannie 35:07
it's just a little bit better than us remembering. Late to do it. Yeah.

Scott Benner 35:12
Right, half an hour into your walk. And you're like, I didn't do a Temp Basal decrease. Oh,

Jeannie 35:18
oh, wait, big people still do that. Oh, yeah, I

Scott Benner 35:22
hope so people listen to this podcast. I hope they're doing it. We talk all the time. But I think the core of diabetes I don't I don't disregard your point that everybody is different. But I think at its core, if you are Basil is well set. If you know how to Pre-Bolus your meals, if you understand the impacts of different foods. Yes, I think diabetes is pretty similar for most people. At that core stuff. Now there's variables off of that, that will change. But if you can get that stuff together, that's a onesie in the sixes.

Jeannie 35:54
You know, and that's the wonderful thing about listening to other people, they challenge you to try something new, or they confirm what you're doing and make you feel good about it. But it's, you know, it's the community, it's just listening and learning and thinking and not feeling like you're so alone, not feeling like you're just absolutely terrible, because you can't get it right. It's like, this is kind of the way it is. And there is some hope, because this person has a similar situation, and they're pleased now. So I could learn something.

Scott Benner 36:29
Now the community aspect of it is, is so valuable. I've always known it. But I understand it differently. Now, after making this podcast, and actually after building a Facebook group that houses that many people and helps them so much, I can now I really see the value in it. You know, before I just knew it as a as a concept. People need people, you know, all those kinds of basic ideas. But when I watched it happen in real time, then I thought this is much more valuable. This might be half of it. I'm just gonna say a name. I don't most people aren't gonna know. But there's this man named Bennett Dunlap, who did a lot of great things in the diabetes community over the years. And I once was sitting somewhere with him where he said that diabetes is like a certain percent math and a certain percent magic or something like that. Oh, yeah. Yeah, you know, and the magic was just your, I think, in his mind, your understanding of how it all worked, you know, like your ability to just kind of bounce through it and get it right.

Jeannie 37:28
Yeah. And what you were saying with community is so much about what people get from camp, because when you're diagnosed, you're so alone. You don't get people. You don't get the share the encouragement, the, the ideas. And and that's just a wonderful thing that parents, and definitely kids get from coming to camp, because it's that everybody's in the same boat. Ya

Scott Benner 37:59
know, it's not lost on me that diabetes camp, and this is crazy, but my Facebook group are basically the same thing. Yeah,

Jeannie 38:06
yeah. It's the sharing.

Scott Benner 38:09
Yeah. It's a place to go to find other people and other voices to get ideas when you don't have them to bounce off things that you're not sure of. To. From my perspective, you can draw confidence from it. Oh, yeah. When you don't have any?

Jeannie 38:24
Yes. That peer support and just the fact that you you can be long, and that you're understood. Very important.

Scott Benner 38:33
Oh, sorry. Yeah. Sorry. Oh, my daughter's blood sugar just went over 120. Don't Don't anybody laugh at me. Oh, she's high. Yeah, it's happening. Oh, this is 121. But even that, her blood sugar just popped up over 120. She's a college. My daughter is, you know, a sophomore in college. And I can tell you, I haven't looked at Ardens diabetes all day. It's almost 1pm here. But by picking up this app, I can tell you that at 1152 Arden Bolus for 40 grams of food. That was 15 minutes ago. She's on a diagonal up right now. So you just heard her across 120 I think the she's at 138 right now. And in a couple of seconds, this algorithm is going to jack or basil up and push back with a small Bolus and it will turn around now here's the crazy thing her 40 gram or 40 gram Bolus ended up being just under five units. Let me do something here with everybody real quick because we made this point earlier. So I hate having to wear glasses Genie if to read like it's like it's now I'm looking back at the computer I needed to be blown off again like I'm Like, why does the screen so blurry? I'm still wearing the stupid glasses. So she's 40. Right? And so 40 carbs. I think maybe her like I said her ratio is 63. Now, back then, one unit did 40 to one unit, what was her insulin to carb ratio before we changed all this right now it's one unit moves her 63 One. Instead of 42. Her insulin to carb ratio used to be this, this might freak you out one unit moved her one unit covered six carbs for this Bolus was a it was 1.6 units less than it would have been before the ozempic. Yeah, and that's, that's just for 40 small carbs. It's really It's great. And there's the spike is the call this a spike is ridiculous. It's a drifting up arrow. Yet, you know, anyway, the tech not so between the technology, and the community. And stuff like this, where I've now had 1000 conversations with people with diabetes, like you even think now, like, you'll look back on your episode, everybody does this, by the way. They look back and they go, Oh, I didn't help. I didn't add anything to it. And I always laugh when I say everybody thinks that. But yet all that information is there and everybody loves it. And I'll ask them like you love the podcast, right? They'll say Yeah, and I was like, Well, what did you get out of it? So that other person's story, I learned this little bit, I learned that little bit, but I didn't say anything today. And I'm like, that's not true. Your stories are really valuable. What we need is the ability to pluck out the gems and and show them to you, you know, so it's all coming. It's happening very quickly. Gee, let me tell you the truth. I'm gonna sit in this room until I can leave something behind that I know my daughter can use. You know what I mean? And the rest of you get to use it too. But, you know, I'm doing it for her. So yeah. Anyway. So tell me something. You still know people from diabetes camp.

Jeannie 42:09
So I went in 65 As a kid, and then, you know, my life as a nurse, and I was working Kaiser and I was helping out with their pediatric diabetes clinic, one day a month. And they, they group, dy, F diabetes youth and families here in California. They offered a back to school conference day for the parents, and it was, you know, August, and I went to, you know, help out with the kids camp, because the counselors from de yf came and took care of the kids while the parents were listening to people talking about going back to school. And I was looking and I saw these pictures. And I said, you know, I might have gone to that camp so long. And the short of that was, well, we need nurses every summer, because each deck of kids has their own nurse. And they said, why don't you come to camp? I don't know. I mostly do adults. And they said, well come to teen camp. So I volunteered for two summers at teen camp, hung out with Dr. Mary Simon, who's the medical director and I just, I just loved it. I hung out with her all day long. I didn't go do the hikes are off to this part and Kings Canyon National Park. I stayed there and just absorbed everything she wanted to teach me. That summer. They were at some point in time, they had a phone conversation, Dr. Steve Gittleman was on the call other nurses and doctors who came and volunteered at camp or on the phone call, because they felt they needed an assistant for Dr. Mary. She was running the medical side of camp all by herself. And it was just too much for one person. So after this phone call, my parting words were well think about who you know who likes camp, who you get along with and who you'd like to spend more time with and give them a call. How are you going to advertise this job? Well, a couple days later, I got the phone call. So I asked my husband I said well, they want me to go to camp, be the assistant Medical Director. It'll be gone for two months every summer. Can I do it? And he said yes. So I started in 2004 and I'll be heading back up in June to do it again. So that's my summer vacation is up at camp. I love it. You've been

Scott Benner 44:37
doing that for 20 years

Jeannie 44:38
or more 20 years Yeah. Wow. Good for you. Oh, it's just you just feel like you you feel like you're in the right place doing the right thing. Talking to people sharing getting people to connect and and share and learn and feel good about themselves. The kids. You It's just it's a break for the parents, the kids are like off playing, or the parents just drop them off, and they go, or they put them on the bus. And so they've got these six or 10 days free, without having to wake up without having to worry about what their kids are doing. And it's so important for everybody. And the kids, the endocrinologist they talk about, you can tell a kid who's gone to camp, they're more talkative, they are more involved in their care, they understand they have confidence in what they're doing. But it just makes such a wonderful growth impact. And every summer that they come back, this change lasts a little longer, until they kind of graduate from camp and come back as counselors to be able to work with the kids. So it's just a wonderful community. And dy F even has a babysitting list.

Scott Benner 46:00
And gee, that's what they get out of it. What do you get out of doing it? Just

Jeannie 46:05
the joy, the joy of being useful? You know, you get up in the morning and can start coming in with bad sites, and you're helping them make a change. Do you want to change? Should we change your site? Do you want to try a different infusion set? I've got a wonderful school nurse who comes up and with the youngest camp, and she's my pump room nurse. So she's in there dealing with these kids too. And it just being useful helping people to feel stronger, better excited.

Scott Benner 46:39
Gee, that's just beautiful. Did you almost cry?

Jeannie 46:42
Yeah.

Scott Benner 46:43
You almost made me cry. And I was like, What the hell's happening?

Jeannie 46:47
I mean, you do you get teary because you think we there's kids who come up and are just angry and unhappy. They don't want to be there. And then as the days go by, they make friends. And then when they leave, they're thinking, wow, yeah, I can come back next summer, or, you know, and we've got a camp coming up. In March, there's a spring retreat, and there's a Fall Retreat, just a weekend thing. But people really like having these little bits of community. Hands on.

Scott Benner 47:20
Oh, my daughter's way college. And yeah, one of the most wonderful moments we, I haven't asked my wife about this, but that I've experienced with her is, it still happens, it happened the other day, she said, I made a friend today. Yeah. And I thought, oh, gosh, she's getting better at things and more mature. And, you know, she's, she's all that great. But she said, I made a friend today. And she was genuinely like, happy about it. You know, and that's such a big, big part of everything.

Jeannie 47:52
I'm gonna do if people you know, the counselors, and the people who have moved on to become staff, or just, you know, keep coming in circling back around, they're still good friends with people that they met at camp. It's almost like your, you know, your college friends that you keep with for years and years and years because of the shared experiences, the shared struggles. Somebody understands.

Scott Benner 48:18
A second ago, you said, it makes me feel useful. Yeah. And it's just gonna sound maybe crazy. But before the holidays this year, my family and I, we were all we were having this conversation. And one of the questions in the conversation was, what's the thing you want to do that you stop yourself from doing that you don't do? You know, something you wanted to try or do or whatever. And I said, I think what, it's I almost surprised myself, but I, I said, I always wanted to chameleon. And they looked at me very strangely. And I said, I understand they're very difficult to take care of. And there's a lot to know. And I'd like to learn something new. And I think they're very interesting. And I like how slowly they move. I think it would be relaxing. It was a philosophical conversation. Obviously, we were just talking out loud. Until my kids take me upstairs on Christmas morning to show me a chameleon they've been hiding in my daughter's bedroom for a number of days. Now, Jeanne, these are severely difficult to take care of no one should buy them like this. I've spent the last three weeks of my life every ounce of my free time. Just immersed in information so that I can do a good job for this thing because I have I have a caregivers mentality with people but with anything really if you put me in charge of somebody, I am not going to stop trying to help them. It took me a couple of days to figure out the basics. I started it's funny I almost did it like diabetes as like well let me figure out what the basics are. So nothing goes wrong in the in the in the first little bit here. And then I'll add my knowledge as I go. And I've done that now. But the other day and my wife said How are you enjoying having the chameleon? And I said, I really like it. I feel useful. Because my kids are older now. And I actually I said to her, I'm like, this thing needs me. And I was like, You don't listen to me. We've known. I mean, Jeanne, I don't know if you're married or not. But I've been married like, 27 years. My wife wasn't a dummy anymore. You know what I mean? Like, she's not listening to me, she, she's an adult, she doesn't need me. And I realized how alone I have felt, since my son went away, graduated, got a job. My daughter's off in college, I feel useless. Some days, even though I help people on a scale that I don't think a lot of people could imagine. It's not the same, because I don't look them in the face when I'm doing it. So, you

Jeannie 50:50
know, and that's what I get out of doing the different support groups. Yeah. People ask questions. And, you know, I'll share what I know. Or I'll say, Okay, well, let me look that up before, like, at the first week of every month, I'm you know, checking out diatribe and taking out a DA, is there anything new coming up? What do I? What questions might they come up with? What can I share? And so it gives me a reason to keep learning myself. Yeah.

Scott Benner 51:21
I find too, that anything I could do that would possibly help someone to not go through everything we went through, to get to the information seems incredibly valuable to me. I wasn't when I started doing this podcast started in 2015. But I've been writing about IBD since 2007. And so when I started making the podcast, my wife was like, This is gonna be a lot of work. And I said, Yeah, I know. But he imagined knowing all this and not telling somebody that seems wrong, doesn't it? You know, and, and that's sort of how I look at it. You know, so finding a way to share Yeah, yeah, finding a way to share something, and I think And now, the people listening, do it for me, too. It's facilitated. Um, the one thing that I don't know if you've had this experience or not, it's very fulfilling. I watched somebody ask a question online. And then before I can get to it to answer five other people answer it. And they sound like they're talking out of my mouth. Like, they're using my thoughts, the things I said, to answer this question accurately, and, and they're being supportive and lovely at the same time. And I think, Oh, I, I created, like helpers. Oh, yeah. You know, like, I'm going to help people that don't even ever hear the podcast. And it just makes me smile, like to think that kids who are recently diagnosed and adults who have been struggling for 30 years, they all end up having the same experience after they listen to the podcast. And so to think of all those people who are doing well in the world is is really lovely. It's a it's a great feeling. And you you've been doing it for a long time.

Jeannie 53:04
Yeah. And you probably remember when when you were diagnosed, you just were afraid your daughter, you know, this, how can you keep this little girl healthy and happy and growing? And to be so alone, and so scared. And so that's where, you know, getting this community going, finding the resources, you know, having, like up at Camp endocrinologist to talk to counselors who have had type one diabetes for many years, and just other families, and how do they make it work? And it's just the value of community? Yeah,

Scott Benner 53:41
no cage. It's hard to believe, I think for some people, especially newer people, and I've even seen people say, I don't want to do that, like, I don't meet a bunch of people, I don't know. And, like, I get that overall feeling. I have to honestly, how are you? If I wasn't doing this? I don't think I'm the type of person who would go to a Facebook group to get help. Like, I don't know that I am, or I'm not like, I just, I'm not sure. But what I ended up seeing is that honestly, most people interact quietly. They're looking, they're reading, they're learning, they're following. They are not talking most of the time. You don't actually hear from them. And that that that's pretty amazing. Because in person, you have to engage people eye to eye, and if somebody's in the back of the room and not listening, there's not much you can do about them about helping them hopefully, or reasonably speaking. Yeah, this is different. Like, this is like you're broadcasting it somewhere. And they don't have to tell anybody. Yeah. Like there are people listening right now, in their cars in their ears, who have the people around them don't know they have diabetes, correct. You know, and so that gives them that freedom to which is a is a big deal. It addresses a lot of different roadblocks that people have getting to the good information, and the community to Something

Jeannie 55:00
that I try to remind people, you know, when I'm talking to them about coming to one of my Facebook groups is like, you don't have to show them your picture. You don't have to be there. You don't have to talk. But just listen. And if you have a question, then you can ask it, you can ask it in the chat, you don't need to be seen. But just come and listen,

Scott Benner 55:23
I left the anonymous function on on my group, because as it's problematic sometimes, but for the most part, I think people should be allowed to ask their questions without giving up their identity if they want to write because I think otherwise they wouldn't be able to do it.

Jeannie 55:40
Because there's a lot of things that we're ashamed of, we think we should be able to do this better. But dad, gummit, we just, we just don't do the right thing. And does anybody have any ideas?

Scott Benner 55:53
So yeah, no, it's very, it's very helpful. So if I was going to ask you, what do you think the keys are to diabetes? You've been living with it for a long time. Can I ask you what your agency is first? I'm usually 5.9 ish. You have an eating style?

Jeannie 56:10
A low carb, low carb.

Scott Benner 56:11
Have you been low carb for a long time?

Jeannie 56:14
Yes. I read Richard Bernstein's book, oh, golly, probably 30 years ago, and I just thought, you know, that makes sense.

Scott Benner 56:25
And it worked for you. It's

Jeannie 56:27
less insulin, less error. It just works for me. Yeah. And but I know that a lot of people that doesn't work for but that's okay. Works for me.

Scott Benner 56:38
Well, obviously work. I mean, that that whole concept is, is rock solid, you know, the fewer carbs you eat the lessons when you're going to use lessons, when you use the less variability, you'll see pure lows, you'll have to correct like that all this obviously, it's obvious,

Jeannie 56:52
right? And I love vegetables. So that's a great, thanks, hope it's easier for you.

Scott Benner 56:55
I see. I always when I started the podcast, I started with the idea that I wasn't going to be able to impact how people ate wasn't going to be able to impact how they exercised, like those lifestyle things. Those are, those are bigger problems in the world that, you know, smarter people than me have not been able to figure out. Right? How do you mass teach that kind of health to people and forced compliance basically. And I thought I couldn't do that. That's silly. I'm going to say, it's how you use insulin. Get your settings, right, learn how to use insulin, apply it to your lifestyle, because whether you whether you get up in the morning and have a plate full of vegetables and an egg, or you get up in the morning, and you're I don't know walking out of a, you know, a convenience store with a soda and a honey bun in your hand. You don't deserve diabetes complications, you know? Yeah. Right. So you,

Jeannie 57:54
how can you use the insulin so that you're happy with your life?

Scott Benner 57:59
Yeah, that's it super simple, like so that's, that's my perspective, always. And always learn how to use insulin so you can do what you want to do with it. Yes, I'm not the food police. I'm not the exercise police. I don't, that seems like an unwinnable job. To me. That's just where I've come from. And I found that generally speaking, that message from that perspective has been really well received by a lot of people.

Jeannie 58:24
If somebody gets really happy by having apple pie almost every Sunday for dinner, and that's what, you know, they, we they look forward to and they want to pick up their Starbucks every morning. And it just it helps them start their day. Yeah. Go for it.

Scott Benner 58:45
Yeah, cuz if you take that from them, you're gonna, you're gonna get into the psychological side of this, then,

Jeannie 58:50
ya know, there's there's enough, we've got to, you know, we've got to deal with with insulin, no matter how you take it. There's quite a few people I know who are on MDI. And they feel that that works for them.

Scott Benner 59:03
I know plenty of people who do well on MDI. Yeah, and the truth is the podcast with the exception of talking about an algorithm, or an extended Bolus, or the ability to shut off your Basal use, you have all the same options that everybody else does. You know, yeah, it all comes down to how frequently you're willing to inject.

Jeannie 59:23
Yeah, yeah. If you don't mind being a pink ocean, you like doing the math in your head. You can keep track of insulin on board or you've got an in pen that keeps that for you. It's doable.

Scott Benner 59:36
Yeah. It's incredibly doable. Actually, you have to be right for it.

Jeannie 59:40
For sure. And then that's the fun reason to be able to share is so that people can learn that this is out there. All right, our medical team, our endo team is not necessarily going to say, you know you like doing shots have you thought about using an ink pen? Or an eye port?

Scott Benner 59:58
Yeah, those are saying around in pens a great tool, by the way. Yeah, yeah, absolutely. It gives you a lot of functionality of, of an algorithm actually, then you know me you get to see stuff on your on the phone app and make better decisions keeping track of things for you, showing you where insulin is, you can compare what you've done to what you're seeing and make different decisions next time. There's, there's a lot of value in that, you know, it's funny, we the way we talk about it, you'd think overwhelmingly, the people with type one diabetes are wearing pumps, but that's not true. Actually, up at camp,

Jeannie 1:00:30
it's probably about 75 80% of the kids are on pumps. But

Scott Benner 1:00:35
I mean, in the world, like, overall, I think the percentage is low, actually. Yeah,

Jeannie 1:00:40
the Bay Area, you know, just there's, there's a lot of people on pumps here, but you go out into the lower populated communities, and you're not necessarily going to happen endo team that feels comfortable with pumps. And so they're not going to prescribe them because they just don't know them. You

Scott Benner 1:00:58
know, it's funny, I tell the story sometimes. But when my daughter was four, we wanted to put on an insulin pump before she started kindergarten. Sure. And we went to basically an insulin pump fair at the Children's Hospital. It's exactly what it was actually. And this is 2009. And around then maybe, and Omnipod, was a very new company. And there were all these pumps laid out on these tables, they almost felt like they were under glass with a spotlight on them, like you were walking through a museum. And then back in the corner of this room, in this cutout corner of this room on a table, there was a box that looked like I the way I always put his it looked like somebody was told take this box and put it on that table in the corner, but they got 10 feet from the corner and didn't want to walk anymore and threw it at the wall and it bounced on the table. Like that's how it was sitting there. And I went over and looked at that, and it was an omni pod. And I brought my wife over and I said, I think this makes a lot of sense to me. I was like, there's no tubes. And if the company makes upgrades to it, I'm like, What are they gonna do make like 17 versions of this, you're always gonna get the newer upgrade, right? Like that makes sense to me like this looks forward thinking. These were my ideas. And I went to the nurse who said, Which one have you decided on? I said, we're gonna get this on the pod. And she goes, Oh, don't do that. Now this again, a long time ago, you know? And I said, why not? She goes, and she looks at art. And she was she's too lean for that. And I said, Well, we're going to try it anyway, and took it away. Two years later, at an appointment, after our appointment was over, the nurse practitioner pulled me aside and said, I want you to know that based on the results that Arden has had on Omni pod, we are now going to start prescribing it to the other kids in this practice. So yours Wow, years later, and I said, Can I ask you? Why did you try to stop me when we got it? And she got almost embarrassed and said, well, it was newer, and we didn't know much about it. And we didn't want you using a pump. We didn't know how to support. I said, but that's not what you said what you said was she was too lean for it. Yeah.

Jeannie 1:03:05
Yeah. was six years ago, I realized that I was hearing more about loop. And I thought and one summer I had two campers, and one family on loop. And I said, Genie, how can you be the camp nurse and not know, Luke. So I came home I saw rayhaan law from Stanford at a fair that was happening. And he was working with someone on loop and I said, you guys, I need to learn this. And so they connected me with a counselor who was in a study at Stanford and who wasn't using her loop and they said borrow hers. So two weeks later, after trying it out. I thought, Dad gummit it works for me. So I ordered my own, and I've been on it ever since. And now I've just been talking with beta bionics. I said, I need to know eyelet I need to wear it, I need to experience it. Because there's already one dy F family using this eyelet pump. So I need to be able to problem solve or answer their questions. So hopefully I'll be able to get on one. Yeah. And just wear it for a couple of months. I'm

Scott Benner 1:04:19
gonna have people on who have worn it, that it's hard to find them at the moment, but I'm looking for them to have them on.

Jeannie 1:04:25
Katie Kraft from Oakland children's sees She's a child life specialist. Yeah,

Scott Benner 1:04:32
tell her to contact me. I'll have her on. I'd love to hear about it. So my expectation about it. And I've interviewed this CEO, I actually did a very long interview with him. And my expectation is, for most people, especially those who are not doing well, this is going to give you an A one C and the sevens and that that's going to be magical for you because you've had an eight a 910 11 and 12 Whatever your a one C's been

Jeannie 1:04:59
That seems to be for me also that population. Yeah. And I think that's really

Scott Benner 1:05:05
magical. Dangerous. Yeah. Right, just you're gonna save people's lives, and they're not going to know their lives are being saved. Like, that's, that's a big deal to me. You know, like, because it's easy to say, I help people in a Facebook group, or I help people at a diabetes camp, or I have a podcast that reaches all these people, Jeannie, I'm pretty comfortable telling you that I'm reaching more people with diabetes, and probably the next five people reaching a lot of people combined. And I am not reaching nearly a small percentage of them. You know, most people are not putting this kind of effort into their health. And if you could take away that, then I think you've really done something at that point for the population. Yeah,

Jeannie 1:05:50
that's, that's gonna be exciting, ya

Scott Benner 1:05:52
know, for sure. Now, you gotta get on him. And I told him when we were talking, in fairness, he he already knew. But I said, I think you're gonna have to, like, target general practitioners, because most people aren't even going to an endocrinologist who said, Yeah, I was talking about I talk that I, you know, that that, to me makes sense. Like, I think his pathway to like expansion is, is talking GPS into putting these things on to them. You know, because they're going to have more interaction with people than the endos are going to a lot of times, right, you gotta get a common place so that you can help them. You know, and you're not gonna help everybody, obviously, but I think you have a good chance at reaching a population of people who are otherwise not going to be helped. That's

Jeannie 1:06:35
one of the exciting things about, you know, being able to share, this is available, check it out. It could make your life a little more livable. 10 years from now. Yeah,

Scott Benner 1:06:46
yeah, no, kidding. Are a lot, honestly. I mean, seriously, I mean, is there any way you're a once he was better than seven when you were in high school? In college? No, right?

Jeannie 1:06:56
Luckily, we have no idea. Luckily,

Scott Benner 1:06:58
we have no idea to me, it's like, I don't want the answer to that question.

Jeannie 1:07:02
Yeah, just like a typical high school kid, you know, eating wrong food. I remember taking a grapefruit and having that for lunch at school. You know, it was like, How is this enough carbs, you know, for the insulin that you took?

Scott Benner 1:07:19
So you feel lucky to be alive? Sometimes? Yes,

Jeannie 1:07:22
I do. I feel very blessed. But it was just, you know, having a supportive family. Because that family team, you know, starts out being so important. When your kids are little, they they need to be helped encouraged. You know, we've got kids, like when your daughter was 12, you probably were a team, you helped her with all the diabetes tasks. Sure. But some kids by eight 910, it's that yo, yo, you're on your own. I've got too many other things or I don't understand. And so it's creating that attitude of can do, and having the support. So I

Scott Benner 1:08:08
agree, I mean, because what you're saying is, it's almost depressing. But, you know, everybody doesn't get a parent who's on top of it.

Jeannie 1:08:17
Yeah, my mom didn't work. So that was a, you know, a wonderful blessing that was still in the era when you didn't have to have two jobs of a house. Oh,

Scott Benner 1:08:26
I I often tell people that a lot of the value that I bring to diabetes is because I actually was a stay at home parent, I was able to focus on it, and really figure it out. And then once I figured it out, I was able to write about it, which taught me how to talk about it. And then like, you know, I had the upper. I always tell people if you want to thank somebody thank my wife, because she was paying the bills while I was doing this. Wait. Yeah, yeah, you just get some luck there. Honestly. Yeah,

Jeannie 1:08:52
that parent thing. I have two people in my life. One was a social worker from UCSF, used to come up to camp every summer and talked about kids in the foster system, who had no support or could not be adopted because they were chat. They everyone felt challenged by type one diabetes. And there's another lady currently who is retiring from being a foster parent, but she's had quite a few kids through her house, because she has type one herself. And she understands and can encourage and lead. She was saying, Do you know of any foster parents who would be I've got a gal who needs a home and it's like, oh, Lord. You

Scott Benner 1:09:39
know, it's funny when you say that, doesn't it make more sense to just have one home where everybody with type one goes and you send a few people who understand them in six months, you can get them helped and able to handle themselves so that they are adoptable at that point. Oh, yeah. Why does nobody fix things the way that makes sense?

Jeannie 1:09:59
Yeah, no, they There's too much bureaucracy probably. Yeah. Just making sure you've got a wonderful type one family who would be more than happy to take in a kid. But they're not licensed as a foster family. So yeah, I understand. But dad gummit you need to the kids

Scott Benner 1:10:16
gonna end up in a bad way. Like, oh, yeah, sure, yeah. You're not just gonna randomly figure out diabetes by yourself. Oh,

Jeannie 1:10:24
heavens, no, no, it's way too complicated. Yeah, it needs to be felt doable.

Scott Benner 1:10:33
Yeah. And then you need some tools, you know, you need to know when to use them. And then you have to have a couple of successes. So you can build on top of them, get a little self confidence, start making decisions about numbers and, and then you're on your way.

Jeannie 1:10:45
Yeah, confidence was a word that just came into my head when we started this little this point, the confidence to know that you can do this. Yeah. So important. Yeah.

Scott Benner 1:10:57
Just the feeling that it's going to work out. You know, it's funny. When I talk to people, when they're really newly diagnosed, and I'm in private, if I get a good vibe from them, I'll tell them at the end, like, You're gonna be fine. I can tell. And they're like, how can you tell? I'm like, well, you're asking questions, and you seem interested in the answers. I think that'll get that'll that'll get you there.

Jeannie 1:11:18
That's exactly what I was said in my head, you're asking questions, you want to learn more, you want to feel like this is your disease, and you're sharing your life with it. But you're leading. It's

Scott Benner 1:11:33
the desire to do better, and the effort it takes? Oh,

Jeannie 1:11:36
because it does. And then it finally becomes second nature in a way. Oh, that's what

Scott Benner 1:11:43
I say all the time. Eventually, you won't think about it, you'll just a thing will happen. And the next thing you do will be the right thing. And that's that it's i i describe the way I think about diabetes now. It's like walking out of a out of a room with a closed door. I do not, my brain does not say walk towards the door, stop, reach out, grab the knob, turn it off, pull the door, walk through the door. That's not how I walk through a closed door. It just happens. I've done it so many times. It just happens, right? And diabetes is the same for me when stuff happens. I can look, assess, and answer in a split second. Doesn't come right away. But it does come. You need the experiences. You have to have them over and over again. You have to not beat yourself up when something goes the way you don't want it to but step back and say alright, this is what happened. What did I want to happen? What obvious thing which one of these tools would have changed that? And then eventually, one day, you don't have to think like that anymore. Just you just walk through the door. So

Jeannie 1:12:45
yep. Anyway, resources, resources to learn.

Scott Benner 1:12:48
It's all you need. You are delightful. Is there anything we haven't talked about that we should have? Yes.

Jeannie 1:12:55
What do you got? Scholarships, oh, camps are expensive. The reason why families don't necessarily go to campus because transportation can be an issue, and the cost. And they're each the different camps that I called, do have their own scholarships. So most camps have their scholarships. So once you apply that would be a part of the application. And the fact that transportation I know that dy F has buses, there's a bus that leaves Pleasant Hill and San Francisco and Fresno, so picks up kids at different areas, and drives up into the mountains. So that was the most valuable thing. And if people want to learn more about diabetes camps, or why to go to diabetes camps, just put that question into your browser, why go to diabetes camp, because there are plenty of papers and studies out there that talk about the things, the blessings onto the children what they come away with, and how valuable that is to their health and confidence. So just encouraging people to research and there's DECA diabetes exercise and camping Association, they hold a yearly conference. So for all the diabetes camps around the world, people can come together and share best practices or their challenges. You know, how are you how did you manage COVID You know, talking about you know, what are you going to do so that you can open up camp again, it's just so worth it to think about so maybe even check for weekend situations. Weekend camp,

Scott Benner 1:14:39
see because I still had the browser open in front of me I just asked an AI model. Why is diabetes camp valuable and it came up with eight bullet points, education, peer support, empowerment, skill development, fun and recreation, networking for families building resilience, safe environment.

Jeannie 1:14:55
Hey, I've got those words written down on my paper right here too.

Scott Benner 1:14:59
Is that Crazy. And that sounds telling you Genie, it's all gonna happen just like this. One day you are going to a doctor is gonna say, Holy God, you have type one diabetes, and they're gonna spin to a computer and say, How much do you weigh? And they're going to type it a little bit, and they're going to boom, here, do this. By the way, that is the basis. That's me. I know you don't know this, but I have a Pro Tip series. Oh, fun. Is it episode 1000? In the podcast? Yes.

Jeannie 1:15:27
Yes, yes. Scott was talking or even talking, talking about,

Scott Benner 1:15:31
he's a fan of it. And I very much appreciate it when he talks about it. I guarantee if you listen to that, you're a one cog in the sexes. And like, like, that idea is just, you know, amazing. So I asked this AI model, what are the key takeaways from these episodes? And it breaks them down for me. And then I said, Can you also give them to me in Spanish? And there they were? Can I have them in Hindi? And there they were. Yeah. And I thought, this has been the one sticking point I've had making this podcast all on, people come to me all the time and say, Can you translate it and I'm like, I don't speak another language. And, you know, having someone translate, it's impossible, like, you'd have to hire two voice actors. And it would just be incredibly expensive. And I don't think it would even work. And then all of a sudden, this computer technology comes along, and I just say to it, hey, what are the key takeaways? Tell them to me in Spanish, too. And there they were?

Jeannie 1:16:27
Well, we're lucky that we've got, you know, here in the Bay area of California there. It's a large Hispanic population also. And so there are two, usually two camps every year that are done in Spanish. Excellent, because there's enough nurses and doctors who are fluent in Spanish. And that's such a huge, do

Scott Benner 1:16:50
you know that those people are in such need of that kind of help. I was once flown to the Dominican Republic, to give a talk about diabetes, to a group of people that overwhelmingly did not speak English. And while I was speaking, there was a translator in a in a soundproof booth. And she was I was speaking and then I was watching her speak, and everyone in the audience was wearing headphones. They were listening to her not to me. That is the kind of effort that had to happen for that to go on. Like, and now just boom, hey, can you translate this, they say, by the way, soon, Jean, you're gonna be able to like, pull out your cell phone while you're talking to a person who's speaking another language. You're gonna be able to speak into the phone in English, and it's going to spit out what you're saying in another language, and then hear them and then tell you what they're saying. Yeah, it's crazy. Crazy. What a lie. I'm gonna try to stay alive longer. I want to see what's gonna happen next.

Jeannie 1:17:51
Hey, I've easily got 20 more years in me for you. I

Scott Benner 1:17:55
bet you do. Alright, well, thank you so much for doing this. I really do appreciate that. What

Jeannie 1:17:58
up joy? Thank you so much for your patience with me. Oh,

Scott Benner 1:18:02
you mean your emails? They were not What do you say? I just don't answer them. So I will apologize to you at the end. I am not not responsive. I get so much email. I get over I get overwhelmed by it.

Jeannie 1:18:13
I figured Yeah. Well, Steven answered me on one of them. So that was helpful. Good.

Scott Benner 1:18:17
Do you know what episode seven was in? No, I don't either. He's so good. I love talking to him about diabetes. He

Jeannie 1:18:25
comes up to our adult we have an adult weekend. He's involved in some of the support groups that I the Zoom groups that I do, so I get to see him a couple times a month.

Scott Benner 1:18:37
Yeah, he's in Episode 828. It's called Steven Appleseed.

Jeannie 1:18:41
There we go. Thank you for 28 Yeah,

Scott Benner 1:18:44
thank you for doing this. Hold on one second for me. Okay. Yes.

A huge thanks to touched by type one for sponsoring this episode of The Juicebox Podcast. Check them out on their website touched by type one.org or on Facebook and Instagram. A huge thanks to us Matt for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box. This is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for long term wear get ever since. If you are 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 CDC es a registered dietician 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 type one diabetes diagnosis. The series begins at episode 698. In your podcast player, where you can go to juicebox podcast.com and click on bold beginnings in the menu. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. 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. Wrong way recording.com

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