Scott Benner 3/7/23 Scott Benner 3/7/23

#863 Tackle Box

Mary Martha toddler has type 1 diabetes and uses Omnipod 5.

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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 863 of the Juicebox Podcast.

On today's show I'll be speaking with Mary Martha. She is the mother of a toddler who has type one diabetes, and they use the Omni pod five. I hope you enjoy our conversation. While you're listening to it. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. Hey, if you're a US resident who has type one, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box and fill out their survey. When you complete the survey you are helping with type one diabetes research, T one D exchange.org. Forward slash juicebox. If you're looking for community around diabetes, head over to the private Facebook group Juicebox Podcast type one diabetes over 35,000 members, someone there is talking about something right now that you know about or want to learn about Juicebox Podcast type one diabetes on Facebook. It's a private group, and it's absolutely free. This episode of The Juicebox Podcast is sponsored by touched by type one, there's a ton going on and touched by type one, you can find out about it all at touched by type one.org. Please also find them on Instagram, and Facebook. today's podcast is also brought to you by the Dexcom G seven continuous glucose monitoring system dexcom.com forward slash juice box the g7 is here it is ready for you@dexcom.com forward slash juice box.

Mary Martha 2:07
I'm Mary Martha. My son Davis is two years old and he was diagnosed with type one diabetes in January of 2022.

Scott Benner 2:18
Not 10 months ago.

Mary Martha 2:20
Yes. So we're nearly in our diabetes journey. But I think because of you, Scott and Juicebox Podcast, we've really gotten a handle on things fairly quickly. So I have a lot to thank you for

Scott Benner 2:38
no, no, this is this is very interesting, because because you know there are some people who would tell you not to get technology at the beginning. And you know, you should learn diabetes from the ground up. And there's a lot of different opinions about that. So I think it's interesting to hear from somebody who's having your experience. So first of all, are there were there any reasons to imagine your children might get type one diabetes? Or was this a surprise? How did the initial days go?

Mary Martha 3:07
It was a complete surprise, really the only person in our family that has had type one, it was my mom's aunt, so my great aunt. And it's pretty removed, I would think and that's at least what the doctor said whenever we were diagnosed. And they asked us about history and all of that. And we leading up to diagnosis. We've spent a few nights it was in January. So we spent Christmas with my parents. And I think my grandmother really put it in my mom's head along a lot of times about that type one and the symptoms, because I think she would my grandmother was always really nervous about her son getting it herself and then her children getting it. And so I think through the years of growing up, my mom kind of was always told about it. And then, you know, through in our experience, she was really the one that kind of told me said I think something's going on with Davis because he was drinking lots of water. wetting his diaper overnight, he would be soaked his diaper would be we would put pads in. And then his pajamas would be soaked. And it's just like this is I don't know if this is normal. I actually asked friends that had children that are similar ages or who had gone through the stages that Davis was in and I said Is this normal? He's wanting water all the time. And he's, he's going through his diaper at night and other during the day really quickly. And they were like, Yeah, that's just that's just toddler stuff. You just need to size up in your diaper and he'll be fine at all absorb it, that none of that worked. So we came to a point when We had gone to the local university, where we live. And we we got to their games all the time. And my mom, at one point was just like, Mary, Martha, you need to take into the doctor tomorrow, like, no question you need to. And she had kind of been putting it in my mind, you know, a few weeks. And that's like putting it off and like, no, he's fine. And it's early, actually interesting, because he had a couple of ear infections on leading up to Christmas. And then after Christmas acid, I think he might have an ear infection again, let's go in to the pediatrician and see if he does, and I actually mentioned all the symptoms that we had. And he was like, no, he's fine. That's just normal. Just try to cut off his water intake at dinner. And said, Okay, if you say looks, okay, if you think it's okay. I'll just, you know, take him home and go on my merry way. And then that my mom came to that point when the mom was like, You need to take him. And so they did that and took him to the pediatrician. It was a Monday.

Scott Benner 6:05
Is is Davis, your first he is my first child. So

Mary Martha 6:09
it's all very, everything was very new to me. And it just wasn't something that was on my radar.

Scott Benner 6:17
Very Martha's, the reason I ask is because you sound like you're 19. But how old are you?

Mary Martha 6:21
I'm 31. Okay, well,

Scott Benner 6:23
you sound like you're 19 Which I guess is great. Probably it, or I don't know, how do you find it?

Mary Martha 6:29
I think it's I mean, I still get carded at the grocery store every time I get a bottle of wine. But I didn't live in a college town. So they don't want to get any but let anybody slip. I see. But yeah, so he's my first. So anything out of the ordinary? was yeah, I wasn't really I wasn't really sure what the symptoms were. Or if it wasn't for my mom, I really wouldn't have had the gumption to take him in and see the pediatrician again, stand up for myself. Really?

Scott Benner 7:01
Yeah, she really helped you. Well, she she was indoctrinated. It sounds like through her life to be looking for diabetes.

Mary Martha 7:08
Yeah, and I think I remember there are certain times when I was growing up that I might have, you know, had to go to the bathroom a couple of times in a row. Maybe we've been on a road trip or something. And you'd be like, are you okay, are you getting diabetes? It was kind of like she was even with me going. Growing up. I remember there were a couple instances that she kind of was on high alert for me. Hmm. And it might have even just been me. Just drinking a lot of water. It might have been around when I was playing tennis or something. And I was just really thirsty. I don't know. But um, and I've been normal every time I've gone to the doctor, so I didn't have any sort of any need to do to be really on high alert. But you know, she was still on high alert when I was growing up too. But if it wasn't for her, I wouldn't have known any of those symptoms.

Scott Benner 7:58
How about other autoimmune issues? Does anybody have celiac or thyroid problems, anything like that?

Mary Martha 8:04
My mom has taken his app was she's actually here with me now she's watching Davis or being on kind of high alert for a low or anything while he naps, so she could give him juice in case something happens. But um, you know, she said she was on a has a thyroid medicine, but I'm not sure if I guess it's probably hypothyroid I'm not sure. Um, and then my dad has a neurological disease that he deals with, but it's not anything that's autoimmune. My mom also has arthritis, but it's not rheumatoid. It's osteo. So, um,

Scott Benner 8:43
so maybe your mom's your mom, but your mom doesn't. I mean, sounds like she doesn't talk about her thyroid thing very much. So you don't know. She doesn't? Yeah, it's autoimmune or not right?

Mary Martha 8:52
I don't know if it's auto immune or not. Okay. She just kind of told me that in passing today in and I called my mother on the audit, because I knew that was a question you normally asked. And she didn't have any any autoimmune on their on my husband's side of the family either so

Scott Benner 9:10
well, so like, let's I mean, let's figure this out. So you when you take him to the hospital finally and you get your diagnosis and your life begins with all this just 10 months ago, did they give him technology right in the hospital? Were What do you start with because I want to you get you climb through things pretty quickly. So I'm interested in how it started and how quickly it moved along.

Mary Martha 9:34
So when we were admitted they did not give us any technology they gave us the glucometer and the lancets and they gave us an insulin pen. And then the Lantis pen and that was what they sent us home with but the so the one of the big reasons what we are able to get the technology was our endocrinologist. Dr. Zimmerman, she's we had our first appointment with her I think it was we were, it was a week after we were diagnosed, we went and saw her immediately practically. And I think they're the real life friendship with her has been so wonderful she get a guest with in her practice, and I guess this might be the norm, she was able to give us a sample Dexcom from the, from that first appointment we had with her and she actually was really great. And she would save us a few every time the Dexcom rep would come by. And so because you know, being a two, he was 21 months wasn't quite to yet. And I feel like the Dexcom is the most important technology a type one diabetic can have because of the just the information, it gives you the the trend levels and just the alerts that it provides for a low in the middle of the night there just with the with the toddler, it's just you never know. And obviously you went through that that you didn't have that technology. No. With Arden

Scott Benner 11:12
No, not at all. I was gonna say Davis and Orton were diagnosed right around the same age. So yeah. But I'm sorry. Like I was just wanted to ask how much did he weigh at the diagnosis?

Mary Martha 11:25
I think he was about 25 pounds. He and the doctor always said that, oh, he's a good way. I remember growing. You know, we went in a few times before his diagnosis, and it was always around the same weight. But he didn't seem to think it was an issue. But then looking back now pictures, you could tell he was very skinny and sick. It always hurts me to go back and look at those pictures. Yeah, no. We had this the the university mascot. And it was the Saturday the Sunday before he went to the hospital. And he actually had the courage to go sit in the mascots lap. And we've been training for that day. You know, we watched videos of him. But that day is one of my favorite pictures. But now it's kind of tainted because it was a day before he was diagnosed. So you can see how sick he is. Yeah, in the picture.

Scott Benner 12:22
I have pictures out of Arden to

Mary Martha 12:24
watch. So it's really it's sad to look it's like how did I not know, you know, but I

Scott Benner 12:30
think it's because normal? Yeah, I think it's because the weight loss happens, generally speaking slow enough that you don't notice it? You know, like it. But then once you look back and you realize once they get insulin and they look so healthy again, you know, you're like, oh gosh, like what was that, that I didn't realize plus 25 pounds. Was that? Did he gain weight after you got him on insulin? Or was they was that?

Mary Martha 12:56
Well, he weighs about 32 pounds now. So he's put on weight.

Scott Benner 13:00
Cool. How hard is it to take care of? I mean, so let's break down like this. How long did you manage with like syringes and a meter.

Mary Martha 13:11
So we did that. From January 24th was diagnosis we got on the dash dash on right after his second birthday. So it's about April 12, I believe was the day that we went and got it. On Monday after

Scott Benner 13:30
his birthday. So January, February, March, April, about three or four months you did shots.

Mary Martha 13:35
Okay, we did shots. And I mean, Davis is probably I don't know how the Lord blessed us with one of the most brave little boys that I've ever met he from the beginning, you know, printing and singer the first time at the, at the pediatricians office to to getting everything hooked up to him in the hospital and being awake all night in the PICU and all that. I mean, he has never flinched once. Interesting. And it's I mean, I don't know. I mean, I can only thank the good board because he has been a trooper from the beginning. So from that first finger prick to any needle from the insulin pin. He's taken it like a champ. Still to this day with the Omni pod putting that on the Dexcom. Last night, we changed his Dexcom and he actually pushed the button for the first time he was like, let's get him on the countdown and save go. He's one of the strongest little boys. I mean, it's a he makes me good for you.

Scott Benner 14:43
That's really excellent good for him. So then you move to a dash after three or four months to use an Omnipod dash then you didn't How long did you do that for just like four months again.

Mary Martha 14:55
We actually did it from April to June. So the Whenever the Omnipod, five was released for public consumption, we called Dr. Zimmerman, actually, we had been texting and every time I'd see something posted in the Facebook group, or on Instagram, whenever I saw it, any news about it, I would forward it to her. I was almost her, her news reporter about everything on the pod five. And it actually came out, like their news about the limited release came out the Friday after he was diagnosed. So it was on my radar from the beginning. And I was like, Oh, my gosh, we have to get on that as soon as it as soon as it's available, and she did everything in her power to, you know, figure out a way for us to get it and ended up having to call insurance over and over and over again. And I think I was the one that figured out what steps we need to say like I was just I was very determined to get that technology. Yeah. And

Scott Benner 15:59
so early on, sometimes your providers Even the companies don't know exactly what's going on in the in the beginning days when they're trying to get lost set up with insurance and everything. So it takes that perseverance to get through it, if you want to do it right away. Okay, so we basically have about the same amount of time with shots with Dash and with AMI pod five are Are you experiencing any honeymoon type things with Davis.

If you live with type one diabetes, if you have type two diabetes, and use intensive insulin therapy, if you experience severe hypoglycemia, or hyperglycemia unawareness, you should be looking at the Dexcom CGM. dexcom.com forward slash juicebox. Just this small device that you wear that sends your blood sugar's speed, direction, and number. Are you kidding me the speed that your blood sugar is moving at the direction it's moving in, and what the number currently is, all from this tiny little device that you wear. It's insane. And you can see all that information on your Dexcom receiver or your compatible smartphone, Android, or iPhone. Up to 10 people can follow someone using a Dexcom. I'm going to pick up my phone right now and tell you my daughter's blood sugar. Swipe up 105 and stable it has been in this range for the last three hours. Nice and stable right now at 105. Not dropping, not falling. I can see I can see where she No Look at all this. There's so much information here. I can't tell you all about what I'm looking at it my daughter's blood sugar. But you could find this information for yourself. Getting an idea of where and how to use insulin by seeing how it works knew I put insulin and what happens next I eat carbs what happens next. You can see it right there on the graph. It's a window into into a whole new world that my daughter's Dexcom brings to us uniquely DAX comm.com, forward slash juice boxes to G six which my daughter is using right now. And the g7 has just been made available in America. It's already out overseas. In places where it's available, you can find it@dexcom.com Ford slash juice box at Arden's next delivery the next time she gets CGM from us Med, they're going to be sending her the Dexcom G seven. So she'll be using it very soon. You'd could be to dexcom.com forward slash use boss links in the show notes, links at juicebox podcast.com. Or just type it into your browser. You know what else you can type in your browser touched by type one.org? Do both today. What are you busy, you can't go to two web addresses for me touched by type one.org Dex comm.com forward slash juicebox. Now let's get back to the show.

Honeymoon type things with Davis.

Mary Martha 19:16
We haven't. That's another thing that I guess. I see a lot of parents struggling with it in the Facebook group and I'll see people posting about not really sure how to how to dose for things. And you know, I've actually become a couple of friends here that three daughters and our men I've found for a couple of ladies who have children around the same age and they've gone through that situation. We've been really blessed I think because that if I had the pancreas was still working a little bit. I don't know what I would do. It would have been it would have been a little bit harder. I definitely

Scott Benner 19:53
yeah. How is it? How is he with treating lows does he pretty easy about it or do you ever I have problems where your time's me, you're concerned that like, he's not going to eat this fast and offer. How was that?

Mary Martha 20:07
I think he actually, he's always been a pretty voracious eater. So I've never really been that concerned about him not eating. And if I, if he won't eat or drink something out just without chocolate milk, he seems to really like that. Anything that with chocolate milk involved, he's very motivated. Also juice as well, he'll drink that pretty easily. In the middle of the night, we started doing, we were doing some glucose shell, and then we did maple syrup. We actually found that using syringes that for medicine, like the Tylenol and such, those syringes are really helpful to put in his mouth and just squirt it in there and hardly not even wake him up. But we've counted even just now he's still doing juice in the middle of the night he'll do with Omnipod, five, we rarely have to do that. Because of the algorithm and how it works. But we if we do, it's just one really small sip of juice. And he just sits up, takes us up and lies back down. So whenever my mother in law is mentioned one time, he was so good about that. He took a sip of juice, looked at her and waved bye bye and laid back there.

Scott Benner 21:27
See the lady? Good enough? I'm good. Okay. Well, that's

Mary Martha 21:31
really to sleep and get my nap.

Scott Benner 21:34
And so do you. I mean, I don't even know how many a one sees you've had tested in 10 months, probably one or two.

Mary Martha 21:41
So we actually have have, I've saved every one of the printout. So I have it here in front of me. I think at diagnosis, I texted or communicating with Dr. Zimmerman about it. And she said that a diagnosis he was his agency was higher than the machine read. It was greater than 13. And then, I guess this was in March, we I did another one. And he was 10.5. And this was I think it was still taking into account some of the the months that he was diagnosis. Yeah.

Scott Benner 22:24
But still that attend three months into it. Is still I mean, it's still a high number. It's,

Mary Martha 22:31
it's still a high number. Yeah. We in the beginning with the I think it was probably before we found the podcast in the beginning, we had really bad issues at after breakfast. Because they were like, Oh, you can just feed him what you normally do in golf, about the carb count on the packaging, because actually one of his favorite breakfasts is oatmeal. I don't give it to him as much now, but oatmeal, you know, it's like, really high. Yeah. And I, I was like it says 15 carbs on this thing. And that is not working. So nothing is wrong. And so I think, you know, listening to you and hearing about Pre-Bolus thing and doing all that, that helped with doing that. And then of course, we would change the ratios, obviously needed more insulin. And those types of things. So anyway, it was it was in the beginning, he definitely did have those days where he would go really high. And yeah, but once we were able to hone in those numbers and figure out the strength. I feel like there's such a strategy and a science to everything that you just have to learn. And I wish it was I don't know how how I could explain it better in the hospital. But of course with a toddler. They're like, Oh, you don't need to wait until after he eats to this because you don't know how much he'll eat. And then you're basing his blood sugar. You even prick his finger and then give him that get and basis carb count on what his blood sugar and his the calculation on what it was before he ate. Anyway, it was all I feel like it's a little bit backwards. But anyway,

Scott Benner 24:19
so So okay, so that I'm sorry to cut you off. Go ahead. Oh, no,

Mary Martha 24:23
but after we figured out Pre-Bolus thing and all that the science behind it. It just really helped. make more sense.

Scott Benner 24:33
So did I mean how did a pump impact you? Like, did you even did you feel like you understood injections? And you're like, yeah, and then so now you're you move on to a pump. Was that your idea? Or was it Dr. Zimmerman's idea or how did you get from the shots to the pump so quickly?

Mary Martha 24:52
I think it was both of us. I think she saw the benefit because you know, because of the small doses In, that you couldn't give, because sometimes, you know, he needed point two verses a half a unit. And that was all that the pin would give for half a unit. And so I think I really didn't want to keep giving him shots because I felt like, you know, you know, you go through a meal and obviously wasn't enough. And then you'd have to get all the get the needle out and do the whole process. And you know, if you just had the pump, you pull out the PDM and plug it in, and you kind of give what you think he needs, in addition to whatever you already does. But I like the fact that it wasn't, didn't have any tubes. And it would be easy for him to, you know, my mom teaches swimming lessons. And I knew that we needed to be able to get in the pool. And I knew that the Omnipod was the best choice for us because of more than that was one of the main reasons but also being an active toddler I didn't want him to be have tubes on him to be caught on all sorts of things. But that was what, what I thought would work for us. And I wanted to get it as soon as I could, because I knew it would bring some level of ease to just take just everything in general.

Scott Benner 26:18
And while you were doing that you were still thinking, I want this algorithm as soon as it's right. So I'll move on to this update. I'll update our stuff off of injections, keep us from having to stick him so many times. So we can make better adjustments after meals and things like that. But I on the algorithm the whole time. So first of all, how did you do on the dash? Was it? Did it improve things over injections?

Mary Martha 26:43
Oh, definitely. I have the we went to Dr. Zimmerman in June, after we saw her in April to get the pump. And his a onesie was 6.5. And it drastically improved. Dr. Zimmerman, and although CDE is there at the office, they're all trying to now get me to become a CD and help them out in the in the office. Because obviously something I'm doing is right. And I pump helped. And obviously the strategies that you provide in the pro tips helped as well.

Scott Benner 27:24
That's great. That's really congratulations. First of all, it's a big shift, right? Because you're not a you're not a young mom. either. You don't I mean, like so you're, you're on your way with your first baby. And then it's not too long before somebody is saying diabetes to you, which is a surprise. And and you're adapting really well. Why is that? Like? Why are you adaptable like this?

Mary Martha 27:48
I'm not really sure I guess it. Um, I one thing I'm I know, technology pretty well. It's what I grew up, you know, when I was always born the next thing in technology, whether it was, you know, a new cell phone, the next model or a new Playstation, Gameboy, whatever it was, I was always itching to get that new thing. And maybe that's why I'm so adaptable. I don't know that as far as technology goes. And my dad is in, you know, the he grew up in. He's 75 Now, but he grew up kind of changing. And he's always been a little in the technology. He worked with telephones. And so he was always there always trying to find the next thing that was going to be big in that realm. And so it kind of always seem that I feel like in my background,

Scott Benner 28:39
yeah. Just just being comfortable with technology and changes.

Mary Martha 28:44
I think so. I think I owe to my parents. And then my husband's been really great, throughout it all. And he's even wanted to learn everything and adapt along with this. Like, we just want what's best for Davis and whatever we can do to provide that for him. The ease, whatever we can do to make it easier and better for him is what we're willing to do.

Scott Benner 29:10
Well, how about the other side of it? So away from the technology more on the psychological side? Is it been a big? I mean, I imagine it's been a big adjustment for you, but how are you handling it?

Mary Martha 29:22
Oh, it was a huge adjustment. I think I went through the stages of grief, for sure. Because I remember getting in the car. And just so we drove to Birmingham, we live in Alabama, and that was the closest Children's Hospital and I just remember getting in the car with my husband and crying and like what did I do wrong? Like could we hadn't get asked? Lord, why did you why did this happen? You know, I went through all those stages of grief. And I think it's hard for me to explain things to people sometimes. And people don't understand how diabetes is a 24/7 365. You're dealing with it all the time. And it is tiresome, especially in those first few months of diagnosis. It's almost like having a newborn. Again, especially with a

Scott Benner 30:22
toddler, I was gonna say just with a two year old, you basically just got done with a newborn. Yeah.

Mary Martha 30:27
And those guys that a good sleeper, so he's thankfully it's been quite, it wasn't as hard. I feel like the diabetes first few months was harder than his newborn stage, honestly. But, but yeah, I've gone through the stages of grief. But I think listening to the podcast helps a lot hearing other people going through different things. I mean, even though they had different scenarios, it's like, okay, this person is going through it just like us. And are they been in a similar situation? And I think the community really helped me, too. I'm not very, I think you and Jamie talked about it the other day in the community episode about the lurkers. And I think that I would consider myself a lurker in the Facebook group, most people are but and I learned so much just lurking and and I see people you know, that have toddlers or older children, and I'd see them doing going through similar things, or they're encouraging other people who are going through those things and giving their examples. And that helped a lot to see. Excellent. That's all people.

Scott Benner 31:46
That's really it's How did you find the podcast? Do you find the Facebook group first to the podcast first?

Mary Martha 31:52
Well, actually, when I was Googling symptoms of diabetes, I landed on the juicebox. Website.

Scott Benner 31:58
Yeah. Oh, I have that thing. Yeah. Right.

Mary Martha 32:01
And so I saw it there. And then I kind of I think my sister in law had a friend whose child is type one. And she sent me a bunch of groups to join, there's one, there are a lot of them and yours was one of them. So I think I probably joined in the hospital, as I was waiting and trying to fill my time was, you know, just not just sitting there. And cars, the movie Cars was on repeat the whole time. So I was trying to find Google and research everything. I could turn that out as well. But the Yeah, I found it pretty quickly. And then I think I was sitting in Davis's room that he was playing, and I found that the episode about start just or the first episode of the pro tips, oh, wow, no, that's immediate. It was within the first couple of weeks. And I was like, That's and immediately copied it and sent the link to my parents, my in laws, my sister in law, and I was like, everybody need to start listening to this. And to this day, my mom listens every time an episode comes out.

Scott Benner 33:14
Thank you, mom. I appreciate that.

Mary Martha 33:17
And I did too. So we should be like, I'll talk to her on the phone and just say, Hey, did you listen to that one about, you know, the lady here, you know, anyway, so we kind of keep up with it, you know, and talk about it. And she learns a lot. And I learn a lot every episode. So

Scott Benner 33:34
hey, Martha, I don't know if it will surprise you. But I'm absolutely delighted to think that you and your mom are having conversations about the podcast. That really makes me happy. That's, I think, do you think other people do that too? I bet you maybe they do. They do? Yeah, that's really cool. All right. So do you work? I'm sorry? Or how do you manage home daycare for your for Davis,

Mary Martha 34:00
I stay home, I've been blessed to be able to stay home with him since he was born. Okay. And so I've been able to throw my whole life into type one diabetes care management,

Scott Benner 34:14
I imagined that that was the case. Because it is, I mean, obvious, but it's so much easier to figure out if you're not going to work every day, you know,

Mary Martha 34:23
going to work and having and having to teach. I know there's so many people, like another daycare workers that are very willing to learn and do all that. But I just feel like it would be such a hard thing to do. And I commend all the mamas that do that. I know it's hard for them. And I'm very blessed that I can stay home and I don't think that he would have scared of it time and range and a one see if I was unable to sort of fully dedicate

Scott Benner 34:54
No, I agree. I think that that's a big part of the reason why I know as much as I do. I Honestly, because I was just a stay at home dad. And there was, you know, like you said, you can kind of push the other stuff aside, just focus on it and really try to figure it out. So do you think that's a mean? Because your leap forward? Well, let me ask you this question before I asked that one, I guess. So you're about a six and a half a one C on dash, but then on the pod five gets wide released, and you get yourself right onto that, what has that experience been like for you using an algorithm.

Mary Martha 35:27
It's been a learning curve, because I think with Dash I was really used to whenever he would start or after a meal, and whenever he would start rising, and be like, Oh, I didn't give them enough insulin. I'm gonna give him like just a little bit more and see if that will kind of did it that way. And what the algorithm had, I've had to learn to kind of take a step back a little bit, and say, let it do its job a little bit more, and kind of relinquish a little bit of control. But there are certain situations where I've been like, Okay, this is a little bit out of hand, I'm going to go in and do what I need to do. Give them a little bit more than the algorithm is telling me to do.

Scott Benner 36:12
Right, right. And so let me was he you started so quickly, like you got on the pod five, even before my episodes about how to start on the pod five came out, is that right? That is

Mary Martha 36:24
right. And I listened to those immediately the day that they came out. And I learned a lot. I think it was things that I'm in a Facebook group that solely about Omni pod five, and I work in that and I watch what other people say and I would use their strategies like Okay, I think I might try this instead. And I furless listening to podcasts, I think I'd seen all those comments and I heard you talking about it with the light other lady. And Cory I heard already talking about it with her and I was like it it kinda even opened my eyes a little bit while I was like, oh, okay, I need to do this. And so I still, even though I was in the throes of it already after hearing, listen to the podcast, it helped me a lot too. But you didn't know how to manage it,

Scott Benner 37:21
but you didn't notice anything. We were like, oh, geez, like we totally set this up wrong. Like you had it pretty well set up to begin with. So did somebody tell you like 5050 Or did his settings just kind of work out that way?

Mary Martha 37:31
Well, his it's not 5050 pretty much at all his been going back and forth between 20 to 30%. Um, Basal thanks a lot de Bolus 20% Basil and 80%. Bolus insulin, his basil was pretty low going into the Omnipod five and I think you know, if we restarted it, we might go a little bit stronger on the basil side. But it was such a I feel like with a toddler, it's such a small number can really mess things up. And you know, you can be too strong, you know, to go. And so we kind of were he was he was going low a lot of the times in the middle of the night around three to five in the morning. I know on Dash. And so we had kind of turned it back to like getting him giving it point oh, five every every hour on the dash in the middle of the night. And you know, then increasing it when he woke up. And so though I feel like that that has maybe made the Omnipod five a little bit more timid. I know those auto boluses we the only number we ever see is point o five. know a lot of people have seen that increase over time as I've been on it. But we still only see a point of five and there are a lot of times when I said say to my husband, I really wish it would give him like point one or point one five right now rather than point oh, five every five minutes.

Scott Benner 39:10
But your Are you seeing any lows?

Mary Martha 39:14
Really Honestly, the only time we see lows is when I over Bolus for a meal. Or you know, after a meal A few hours later, he might get a little active running around or well, but that's really the only times we see Lowe's and also in the middle of the night. We've seen Lowe's recently, and it's hasn't been a low it's been an issue with the Dexcom being like 30 or 40 Points off. And it's reading way lower than what the what his blood sugar is. What's interesting.

Scott Benner 39:47
So but besides, besides the CGM like was that a compression low or do you think it's just needs to be calibrated or

Mary Martha 39:56
I think it's mostly it needs to be calibrated because I feel like we've only had one come The question was the whole time and that was a few weeks ago with, I remember from like 60 to 40, double down on the instance. And I don't think I've ever gotten out of the bed and run up the steps clicker.

Scott Benner 40:14
There, and he wasn't he wasn't that low.

Mary Martha 40:16
He wasn't low. Yeah, I think it was probably around 90 or 100. But it's actually been really good about the lows in the middle of the night. Like I said, the majority of the ones in the middle of the night have been Dexcom. Getting a little bit off.

Scott Benner 40:32
Right. So you're seeing with Omnipod? Five, a lot of stability overnight. Yes. Are you sleeping more?

Mary Martha 40:41
Oh, for sure. Definitely. It's been amazing. We actually, um, I think I sleep through the night like I did before his diagnosis. So it's been really, really helpful.

Scott Benner 40:57
That sounds nice. It really does. I just had, Arden had a like a big influx of hormones from her period. Yesterday, so yesterday was really like a difficult diabetes Day for Aardman. She's in college. So I was there, she and I were going back and forth throughout the day, because we were being really aggressive just the whole time to where we were, which was not in the no great shakes. And so then as the day wore on, and we started to get it down to got later and later, and I was like, I was up way too late. Or Martha and like I got up this morning, I was like, oh, like, old man's gonna need a nap today. You know what I mean? And it's just not something. It's not something that you can sustain forever. So I'm just such a big fan of these algorithms to help people sleep if almost nothing else.

Mary Martha 41:46
Oh, for sure. Like I have a have a lady, the doctors around put us in contact with does the loop and she has a little boy, that's too I'm not sure he was diagnosed very young, but they've been on loop. And they do amazing. And I've gotten a lot of tips from her. And she's wondering about Omnipod five for her son. And you know, said if only if anything I could recommend I couldn't recommend it enough because it helps me sleep. Because that's the only reason that you get it, then it's a big deal. It is a big deal. I think from what I know of her situation, I think they sometimes do have still have nights where she asked to correct a low blood sugar. And so I was like if you can, if any reason just do it because you can sleep.

Scott Benner 42:36
Just get an Omnipod five, just sleep. I actually don't know if I ever brought this up. But you know, in the months leading up to the on the five Omni pod five coming out, I was talking about it with Omni pod one time. And I said, I think you guys should give it like a pillow away or a coupon for a new mattress. And it should be like, hey, guys ready for a good night's sleep? And the person I said that to laughed, and they were like, Do you have any idea? Like how many people say that I was like, Oh, really? And I thought I thought I was being very thought, you know, I thought I was having a great idea. And she's like, No, it is a great idea. We don't have any tie ins with it. But you know, just That's how impactful we felt like it was gonna be interesting to hear you say that exactly. does impact you that way? Oh, it does. How involved is your husband with understanding the diabetes? Or does it not even matter now that you're using an algorithm is it just is it easier for people to help him

Mary Martha 43:29
he my husband's been there every step of the way. He actually in the hospital, I was feel like I was a little more I guess I was kind of in shock still. And so he kind of took the took the lead and he did the first injection he did the first finger prick and all that. But of course I'm I'm home with Davis. So I am the person that handles it most of the time. But my husband understands everything, sometimes even better than I do. He's sometimes even bolder than I am. It's he doesn't actually listen to the podcast, he he just hears me talk about it. But he understood it. He has a great understanding of everything. And he he and Davis went to Monster Jam a few weeks ago. He had the whole day of diabetes management. It I think there was some connectivity issues in the arena they went to but he did a really good job Davis went a little bit high. But you know, what can you do with all the excitement of the monster trucks? I'm sure Dana's had some adrenaline and all that going through his body.

Scott Benner 44:39
But you did right. Especially in the indoor event. It's probably so loud and there's fire trucks are jumping all over the place. Right? That's crazy.

Mary Martha 44:48
Oh, yeah. But he they had a great day and he was able to, you know, handle everything and you know, I felt comfortable sending him up there and I had the day off and I'm But my husband's great. And there's all I can also thank my bad parents in my in laws and my sister in law. From the beginning, they've been incredible. They ask questions, they, they want to be involved in Davis's care. And, you know, the CDE is at the the diabetes and Nutrition Center, we go to, they, they told us that we could bring anybody we wanted to, to any of these, you know, education, meetings, and we scheduled one for my parents, we scheduled one for my sister in law and brother in law and, and my in laws, and they came and they learned all about everything that we learned in the hospital. And so that was great. And they've been my in laws kept Davis for the first time for a long weekend when my husband and I were able to take the mini vacation. And, you know, they did great, they did a pipe change. And they did a Dexcom change all in one weekend. They were baptized by fire.

Scott Benner 46:03
Do you think like, I'm not trying to get you to say something you don't believe but it has the I mean, you've seen three forms of care in less than a year. And it is one of them. Easier for you is one of them easier for other people? Is one of them making daycare or you know, other people being in charge of Davis when you're not around? Like? Can you kind of go through that a little bit for me like because I think the reason I'm asking is because I think there's a I don't know if you realize this or not. But there are a lot of people with type one diabetes, and not many of them have insulin pumps comparatively speaking to the number. And I don't, I don't know if that's because of access or if it's cost or if it's if it's fear. But if it's if it's fear, I'd love for you to be able to talk about that.

Mary Martha 46:55
I definitely think that the Omnipod five is probably the best scenario for help for having outside help. From my parents, from a babysitter from malls to it's very seamless technology, and it connects to the CGM, which correlates to how much insulin is gonna deliver. And I think that in itself, AIDS letting you know, letting somebody else take care of Davis, it makes it so easy. And there's no calculation. I know, in the beginning, we had that we wrote down on a whiteboard, what His correction factor was, and what the you know, based on what his carb ratios were two, and so we would look at that board every time we were about to feed him and say, Okay, this is what we need to do and subtract this from this and all that. The fact that the pump does it for you, and you don't even have to plug in your blood sugar, the blood, his blood sugar, and it's also seamless. It just makes it so easy. Yeah. There is really invaluable tool.

Scott Benner 48:06
That's really, I mean, that's kind of how I say it, at the very least. And like I said, I don't know if I'm trying to remember if this has been said out loud on the podcast yet, or if it's been recorded, and it's going to be up soon. But you know, I always lean towards if you want technology get after it. And just recently we're talking about and Jenny was like, you know, I kind of agree with you about that. And I was like, oh, and she said, but I do think there's value and understanding diabetes, kind of on a more manual way, which I'm not saying there isn't for sure. I'm just saying that. Like, how does it in a world where the idea is I have this little baby or this young person, and I'm gonna stick something on them. I think that's how people think of it. Like I don't want to stick something on them. And I want them to have a machine on them. Did you have that feeling first?

Mary Martha 48:54
I didn't. And I remember I saw maybe it was a picture on Facebook or something, maybe a tick tock I don't know. But somebody was like, this is the last picture of my son without anything on him. Like I didn't know that this would be the last time I would see him without a device and that never cost that much. And I was always just like, if it's going to help him, then put it on him. I don't I don't really care. I don't care. I just want it to help him. I want it to bring him to the vet, you know, keep him healthy and Aiden keeping him healthy and never crossed my mind. Why? Yeah, I do think

Scott Benner 49:36
I'm sorry. Okay. Yeah, go ahead.

Mary Martha 49:39
But I do think it does hinder people from that thought of not putting a device on or having something stick out or it keeps people from getting the technology.

Scott Benner 49:52
Why were you so understanding of the reasons, it would be important like how did you understand How did how did you learn about diabetes in the end the needs you have as far as variability and agency and things like that related to better health?

Mary Martha 50:10
How do I learn about it? I think I learned about it through the podcast and just Googling stuff like, honestly, I figured out that you had all those episodes about pro tips, and then the the defining diabetes, and that was really how I learned everything.

Scott Benner 50:26
Cool. Oh, that's amazing. I was not looking for an answer. That was like all I learned on the podcast, Scott, but I will accept that as an answer. So thank you.

Mary Martha 50:33
But I think before I started listening to those episodes, I was in the Facebook group, and I would see people talking about Pre-Bolus. I said, What in the world does that mean? And then I took it to Dr. SHERMER. And I was like, What does Pre-Bolus mean? Or what does Bolus P? And she explained it to me? Oh, okay, that makes sense. And so she also definitely helped him that in the education as well, she and her team that have nutritionists and CDs, they helped as well, but I think they kind of I would come in after, or our appointment, I'd be like, the podcast says this. And they're like, Okay, yeah, that's, that's right. This is basically everything I learned was for me.

Scott Benner 51:17
They must be thrilled. Or maybe they are, I don't know, like, did they like hearing that? Well, like,

Mary Martha 51:24
they probably, I feel like, every time I spoke, I was like, Well, this is what I heard on the podcast, and they probably thought it was getting old. But um, you know, I think with the results that I saw so quickly, they, they really didn't have any room to complain about me learning everything, because it was working, obviously. So

Scott Benner 51:45
I see what you mean. Like, like, yeah, yeah, she's coming in talking about a podcast, but but the information is correct. So who cares where she's learning it from? That?

Mary Martha 51:56
I think they liked the fact that I was taking it into my own hands and, and learning everything that I could.

Scott Benner 52:04
Well, that's an open mind so far. And that's an open mind to Dr. To.

Mary Martha 52:08
Oh, I mean, Dr. simmerman, has been welcome to all of my ideas from the beginning. And, you know, she, she's young, and actually, she's a type one diabetic herself. And she has probably experienced everything. I think she was diagnosed later in life, but she's experienced everything that we have. And so she knows. You know what we're going through. And so that's been so helpful.

Scott Benner 52:37
I want to ask her a question. I feel like I asked before, but I just want to go over it again. When your husband took Davis the other day to go to Monster Jam. What was it? Did he tell you later? Like? Like how he found the experience of being by himself with Davis? Like, did he find it stressful? Or did he find that it went the way he expected? Was there trepidation? I mean, does he not? Does he go with him frequently by themselves like this for a full day? Or was this kind of something new?

Mary Martha 53:05
Oh, they do things all the time. They love to go to waffle house in the morning, Saturday morning, let me sleep in a few extra minutes. They do things like this all the time. And I think the monster dam was a little bit more of a an adventure than his normal just going to waffle house or spending the afternoon with that type deal. Yeah, it was he was in the car for a long time. And I know sometimes when you're setting Terry makes your blood sugar go up a little bit. Um, and then the whole connectivity issues with the Dexcom not reading the his phone. That was a little bit I think it had to do with Bluetooth and being in that big arena. But I think he was a little bit more stressful than he then the normal couple hours that here and there that they would go out.

Scott Benner 54:00
But nothing, nothing that ruined his day or knocked them off track or anything like that.

Mary Martha 54:05
Oh, take it really stay. I mean, seeing Davis's joy when seeing those Monster Trucks jump up and down in the air and do donuts in the mud. I think that kind of. He did go a little high. But I think that joy that Davis was experiencing was like, Okay, we will handle this. When we get in the car. We'll handle this. You know, we're going to just do the best we can right now and let Davis enjoy this and then we'll figure it out.

Scott Benner 54:34
Hey, Martha, you didn't want to go see the trucks?

Mary Martha 54:37
I would have loved to but um, they didn't. Well, my husband went with a couple of his buddies from college and they also have little boys and they all went up there and it was it was a guy's day.

Scott Benner 54:50
Yeah, I was just teasing you. I didn't I imagined you were like who day off? So yeah.

Mary Martha 54:55
Well, I think it would have been worth it to see Davis's reaction to the monster trucks that were also videos of him going wow. And his it was just, I would have loved to have seen it. But it was nice to sit back and not worry the whole day.

Scott Benner 55:14
No, that's really wonderful. It just is I trying to put myself in a in a position where I'm imagining 10 months into Arden's diagnosis, if I handed Arden off to Kelly and was like, here you go, just, you know, we'll see later today, not that Kelly couldn't have done it. But I mean, with the needles and the meters, and it really just would have been something you No, it's not that long ago. I know. It feels like the people, maybe it is, but 16 years ago, and like the world of diabetes technologies just not that long ago, and it's taken the whole thing. She's taken such a leap, you know, and you'll never know, it's just kind of cool to like, you hear the stories on the podcast, which is great. But you're never going to know about most of the stuff you hear people talk about when they're like, Oh, I had to pee on a stick or? Yeah, you know, I actually had somebody contact me recently. And there's, they're an engineer, and they had like an idea about collecting urine for kids. And I was like, Oh, that's interesting. But it just, I don't know, the world's just, it's different now. You know, like for this stuff, and it's really beneficial to me for you guys raising them for your family around you trying to help him but for him as well, like, what's his agency now?

Mary Martha 56:24
So back in September, and it was 5.90. My

Scott Benner 56:28
gosh, it's crazy. It's so cool.

Mary Martha 56:32
It's amazing. Yeah. The technology. I mean, I'm thankful that we live in this day and age where the technology is available. How much? I mean, it's only getting better. Yeah, no

Scott Benner 56:44
kidding. How much interaction do you have with the Omnipod? Five? Are there other times where you're like, oh, like it needs more here? I mean, I'm sure there are, but how frequently is it?

Mary Martha 56:56
It's an I haven't checked it in a second. I think it's handling everything pretty well. Yeah, so I feel like I look at it more at night, and have to intervene a little bit more at night, we see. protein and fat rises, and I guess it might be growth hormones to happening at night. We've had to, to give him more insulin more frequently over the past couple of nights. But during the day, it's, I just look at it, you know, at lunchtime, or with or out, I'll check it and make sure it's, you know, in a good range to see if I need to pack a juice box in a purse or bring his diaper bag in the place where we are and but, you know, honestly, it's, I feel like I don't really look at it that much. It's taken a weight off my shoulders, you know, it's gonna it's in the background doing its job. And

Scott Benner 57:58
yeah, that's really excellent. Good for you. I'm, I'm thrilled for you like, it's amazing to watch how quickly you ran through the whole thing like you found the pie since you found the podcast, it took you a couple of months to figure everything out. Next thing you know, you had an A one C and the sixes, you weren't scared to move to an algorithm. And now you're having a five nine with the algorithm. It's just, it's astonishing, really, how quickly you jumped through it. Do you ever stop and think that like, hey, I really figured this out because you did. Like it's but it's cool, like ever give yourself credit for it.

Mary Martha 58:31
It's hard for me to do that. I think the times I remember when we went into our, I think maybe our second in though, I was really nervous about his a one C and I wasn't sure if I was doing the right thing because we had a couple of days that he was high and higher. And, you know, Dr. Zimmerman has made it a point to always tell me how good I'm doing well, well, I'm doing and embrace as my husband does, too. And it's I have to give myself credit a lot of times and it's really hard to because some that I beat myself up a lot. I know I did in the beginning because I was like, Man, I'm failing him. I'm not doing it right. I'm not. He's still going higher, you know, and but I've, I've had to take a step back sometimes and say, you know, you are doing really well by Davis and you should be proud of yourself.

Scott Benner 59:28
I'm glad you're doing that because you are and it's a hard thing to give yourself credit for especially coming out of a new diagnosis the way you did because I know everybody blames himself from the beginning, you know?

Mary Martha 59:39
Yeah, definitely. And, I mean, I have to give all credit to the good board above because I think all through every situation we've been in. I've seen him working in our lives. It's crazy. From diagnosis like my mom knowing all about it, and then Did you know Dr. Zimmerman actually was a childhood friend of mine? And her, her dad or mom worked with my dad? And my dad was integral in bringing her to the hospital here locally?

Scott Benner 1:00:14
Wow. It's Chelsea right. So,

Mary Martha 1:00:17
yes. Dr. German? Yeah. She It's crazy to think about that, you know, the the hospital here, here in town is it's a Regional Medical Center. But you know, the big hospital is in Birmingham. And the fact that we have an a pediatric endocrinologist here in the community is amazing. And it's, I mean, I do a lot of everything, almost to her because, you know, she's very accessible. And she goes along with everything, but all my crazy ideas like putting my child Omnipod, five, when it's just brand new, she was ready and willing to do that, and wrote the prior authorization and all that. So,

Scott Benner 1:01:05
yes, you said she has type one. Do you know how old she was when she was diagnosed?

Mary Martha 1:01:11
I think she was in her later teenage years. But I think from the beginning, as soon as she was diagnosed, she kind of maybe she wanted to be a doctor from the beginning. But I think since diagnosis, she was like, I'm going to be an endocrinologist, and I'm going to help children who have type one, she kind of had that mission ever since she was diagnosed.

Scott Benner 1:01:35
Yeah. Well, you know, Omnipod actually got the clearance for ages two and above now for Omnipod. Five,

Mary Martha 1:01:42
right? Yeah, I remember. As soon as that came out. She doctors everywhere connected me with another lady with another outfit that I don't think she's quite to yet. But I think they just started on Omnipod. Five. And I know I immediately sent that news to her. I was like, this is this is it. Y'all can get on it. You know, y'all should do it. And they just started a few weeks ago, and I hope I need to check in with them and see how they're doing. But I hope, I hope it's hope it's going well for them.

Scott Benner 1:02:15
Yeah, me too. Hey, I have to ask you a question. So a moment ago, I stopped myself from making a joke. But now I want to know if you would have handled it okay or not. You said that you really wanted to give a lot of credit to the Lord. And I thought, it's me and the Lord in a rowboat, Mary, Martha. And you can only throw what you gotta keep one of us for diabetes only. I beat. I beat the Lord, right.

I just I'm delighted by the idea of you, politely asking the Lord to jump out of the rowboat. We got to keep this guy with the podcasts or I'm sorry.

Mary Martha 1:02:55
I'd like to think that he's the one that has brought you into my life as well. Just the he.

Scott Benner 1:03:01
I see what you're saying. Okay, I'm accepting of this. I just wanted to I just wanted to put you in a really farcical situation. So

Mary Martha 1:03:11
I get it. It's funny.

Scott Benner 1:03:12
I didn't know were you in the moment like I can't tell. Because they're Murthy because of your accent. I can't. I can't tell. If you I can't decide if you would have gotten my sarcasm or not. I think I think I would. I do too. But I just can't tell that's all. You know, I can tell easier with choose those people I can I vibe with them very well. I have a great episode up today with a woman and she and I had the most just delightful conversation. But I already knew her like I could I understood her the tenor of her of her sense of humor. Like right away. And you're as I'm trying to figure out still, even though we've been talking for an hour, I'm still like, I'm not sure but I don't know. It's cool. How is it living in Alabama?

Mary Martha 1:03:59
Oh, it's great. It's still pretty hot. It'll be like I feel people that joke about how it's fall in the morning and then in the afternoon. It's summer. We turn our heat on in the morning and then that 12 noon, it's back on AC blow and full blast.

Scott Benner 1:04:17
No kidding. How warm is it there today? middle of October.

Mary Martha 1:04:21
Let's see. Right now it's it's Saturday seven. Wow. It's actually quite pleasant today. But over the weekend, it was hot. Right?

Scott Benner 1:04:35
And when you say the school the school you mean the University of Alabama right? Oh, no, no, no,

Mary Martha 1:04:42
that's not it.

Scott Benner 1:04:43
Oh, there's a better one you're saying and you don't want to fight other people?

Mary Martha 1:04:48
Well, I know a few months ago you had a podcast and the title is

Scott Benner 1:04:53
key. Oh, you don't even say that where you're from? Did you skip

Mary Martha 1:04:59
up now? I actually listened to it almost went to the I'm a big Auburn fan. I have been since I was a very small child. And I'm indoctrinating Davis into this as well. He is obsessed with going to Auburn games in the marching band and I'll be the mascot. But we say War Eagle in our house.

Scott Benner 1:05:26
Did you go to Auburn?

Mary Martha 1:05:28
I did. Yeah. Yeah, I grew up pretty close to Auburn and actually ended up going to school up in Virginia for a couple years. And we in Auburn ended up winning the national championship, my sophomore year of college, and I wasn't there to experience it. And it haunts me. And so the next year, I transferred to Auburn. And

Scott Benner 1:05:57
if nothing else,

Mary Martha 1:05:58
for the football, if nothing else, I was very homesick because of it. I remember when I told all my friends at school in Virginia, I was like, Yeah, I'm transferred over and they're like, why are you transferring? I'm like, Well, I think it's because of I miss going to football games and they thought I was crazy.

Scott Benner 1:06:17
What would you get a degree in?

Mary Martha 1:06:20
I got a degree in entrepreneurship and family business.

Scott Benner 1:06:24
Do you get to use it at all?

Mary Martha 1:06:27
My I do a little bit. My dad was an entrepreneur and in was an investor in a bunch of small businesses and started a bunch of businesses. I felt like I got that gene from him. On my husband's family had a business that they recently sold to a national business. And so my husband used it in his he actually had the same major. That's really where we met in class. And he, he used his degree in his family business. But actually, after college I did, I went and worked at a small startup. But it was a pine straw company. What they sold and delivered pine straw and installed pine straw as a ground cover, I don't know

Scott Benner 1:07:16
it was I happily use it. There. Martha I have context for this. So in the south, you guys use that instead of mulch, right? Like around bushes and trees and everything. See, I know, I've traveled I know what's going on. And so and they're just pine needles, right?

Mary Martha 1:07:31
Right. You just collect it from basically pine tree orchards down in Pine Tree fields down in South Georgia and South Alabama, and North Florida, that panhandle area. But it was a it was a startup and it was we helped grow it, it's still going well, I ended up getting married and moved away. So I didn't continue working there. But it was it was really fun to, to experience it and learn more. It's kind of like I feel like I've done the same thing with diabetes, because I've been thrown into it and having to learn everything. And I did the same thing. When I was just out of college, the pine straw, I knew every single type of pine tree needle like the different cones and what would work better and and I ended up being a dispatcher for some time for the trucks that would deliver it Home Depot, the big loads. I mean, it's like you're working in a startup you just kind of go where they tell you or where they need you. And so that was what I did. And it was really interesting. And I learned a lot I learned how to be that as I say that maybe that's where I learned how to be adaptive. Yeah,

Scott Benner 1:08:39
right. That's interesting. It really is do you what are your plans? You guys gonna make your family bigger? Are you gonna go back to work one day? Or what do you think of that doing?

Mary Martha 1:08:49
I do think we'll make our family bigger. One thing that was really you know, bring it we were talking about the good Lord above right before Davis was this is that like diagnosed actually was pregnant and I had a miscarriage not even like a month, like two weeks before he was diagnosed. And I really do you think that that was also the word working? Knowing that I wasn't really able to handle that. I don't think I could have been pregnant in that first trimester while you're being so tired while also learning diabetes and spending day after day fighting with learning how to do everything and being held up half the night you know, finding a higher worried about a low and all that. I think that all that happened for a reason.

Scott Benner 1:09:43
Yeah, Mary Martha. Even in a comical way I can't take credit for helping you with that. So yeah, no, that's nothing I was not involved. Well, I'm sorry that you went through that but ya know, I can't imagine and I see to how you How you keep a very positive outlook on things, which is gotta be incredibly helpful through with all this?

Mary Martha 1:10:07
I think so. I mean, I can only, you know, I feel like that if you maintain that positive attitude it, it really does keep you going. And if you dwell on how bad things are, I mean, you're only going to be unhappy and sad all the time. So you might as well be happy and think positively. Yeah, you have

Scott Benner 1:10:27
what I would call a boys attitude. You're just like, like, just get it, we'll just do it. Let's just do it. Sucks. Let's do it. I don't know if it's really a boy's attitude or not. But it's, it's, uh, it, we were just, it's funny, right? Great. Before I recorded this with you, my wife, and my son and I were downstairs and my wife works from home, my son just got home from college. So we're happy to all be together. And we were talking about this thing where somebody, you know, kind of made a commitment to something. And then it ended up being more than they expected. And you just were hearing from him a lot about this isn't what I thought it's hard. I don't like Baba. And it's only a limited time, this thing is not the rest of their life, you know? And I'm hearing the story. And I said, I said, Look, I have a lot of compassion for this. I know, it's, I know, it sucks. But now we know what it is like, let's just do it and be done. And my son kind of chimed in, and he's like, I really agree with that. He's like, just like, do it. You know, and I thought, it's just sort of what you've been talking about along the way, in a roundabout way. You're just gonna get it done, and then move to the next thing. And it's not what you wanted. But it's not it's not insurmountable. And the worst thing you can do is fight against it. Sometimes I think, you know? Yep. So sure. Yeah. No, I think that's really wonderful. Is there anything that we haven't talked about that you wanted to?

Mary Martha 1:11:56
Well, so I wanted to tell you about my diabetes tackle box that I have, this is kind of a random thing that I thought might help other people. Okay. Um, so my husband was actually on the fishing team at Auburn. So he was a bass fishing on the bass fishing team.

Scott Benner 1:12:18
Hey, Martha, before you go forward, I want to ask you, were you trying to say the most Alabama thing you could think to say just now?

Mary Martha 1:12:24
No, I wasn't. I figured it would probably come across that. It's

Scott Benner 1:12:28
really, like, I was like, oh, there's a fishing team. I was like, that's amazing. I didn't I had no idea. But okay, your husband's on the fishing team. at Auburn. Yes.

Mary Martha 1:12:37
Okay. So he, and he's, you know, we've, he's fished pretty much his whole life. And so, what, whenever we got home, you know, we went to the, to the pharmacy got all of our supplies, the pin needles, the lancets, the test strips, the alcohol wipes, all of it. He was like, we need to tackle box for this. And so we have a tackle box that holds all of Davis's diabetes stuff, and I have it right here in front of me. Um, but literally, whenever we do a pod change, whenever, you know, I need to check his blood sugar if I think the Dexcom is off, whatever, I just pull this bagel toggle box out, open it up and has everything I need. That's amazing. And so anyway, my husband's ingenuity. Yeah,

Scott Benner 1:13:30
being honest with me when your husband first said if you think oh, is he gonna have more ideas like this? Or were you like okay, let's do it. Now there's a tackle box in the kitchen I imagine which was probably not what you expected but but be just for a split second. I know it's working great. But would you first set it were you like come on man. or No? Or do you like

Mary Martha 1:13:51
I think that I was pretty on board I saw how many things were involved in I was like we need it in a organized manner. So that's what you if we want to try it go get a taco box. We'll do it that makes sense. So I actually took it into our endo appointment that first time and I was like, here's everything we our whole life like tell me you know, this is what we got right here and they were very impressed by it and I think they're actually mentioning it to new patients that they come across so they will start a

Scott Benner 1:14:23
trend Do I need any special kind of box or does any brand that I think will work do for me?

Mary Martha 1:14:29
I think a good Any brand will work this one's Plano which which is probably from Academy sports and outdoors I would guess. But well yeah,

Scott Benner 1:14:38
that's really isn't isn't that interesting though. Like you know, just how his own experiences you know, informed the next thing he looked at all that stuff and he thought I don't know what all this is it needs a home. We have to put it somewhere. I know what I organize random stuff. For me. It's a tackle box. Some people Oh, that's right. And so But that's not all your storage, right? You have diabetes supplies stored somewhere else, but you've stocked the tackle boxes, you need it.

Mary Martha 1:15:06
Yes. So like, all of our, we have a couple of drawers filled with all the Dexcom supplies and the Omni pod supplies and all that. And that we just keep a small amount in the tackle box and each little designated area. So if we go on a day trip, or go anywhere, we can just grab it and know that everything that we need is in there as the insulin that we use to refill the pod. It has a juice box sparks plans, everything you can imagine that you need.

Scott Benner 1:15:42
I think it's brilliant. I really don't. Really is I wondered if you were like come on, but I didn't. I was it's it's really kind of like it's brilliant in its simplicity, how like perfect, it would work for that. But Plus, they have little like tours, you can resize them and make it work just for how you want it. Right.

Mary Martha 1:16:00
Right. So you can, you know, pull the little thing out and make it as big or as small as you want. It really does work really well for instead of ordering one of those fancy are using those. Yeah, I think there are a lot of diabetes supplied bags and such that we just have to pack a box.

Scott Benner 1:16:20
And it's durable, too, right? Yeah, for sure.

Mary Martha 1:16:23
Yeah, this is knocked it off the counter a couple of times. And it was watch, thankfully,

Scott Benner 1:16:29
there you go. That's pretty cool. That's I mean, I didn't expect you to say that. But um, I think it's a great idea. You're like, you know, I just want to tell people about one thing. It's a tackle box. I'm like, wait a minute, what's happening? Yeah, that's pretty kind of bro. Yes. Really? Yes.

Mary Martha 1:16:44
It's really worked out for us. And so I'm thankful for my husband's fishing background? I don't think we would have we would have thought of it otherwise. Is

Scott Benner 1:16:52
that a fishing team? Is that? Could he get money for that?

Mary Martha 1:16:57
Oh, definitely, um, we actually one of his teammates. Two years, two brothers, they're actually really successful. I'm one of his good friends named Jordan Lee has won, he won the Bassmaster Classic two years in a row. And that's what that's basically like the Super Bowl of all bass fishing.

Scott Benner 1:17:17
So like, Oh, my son got money to play baseball kind of an idea. Your husband got money to fish at school?

Mary Martha 1:17:25
Yes. So it's actually really changed in the past few years. I feel like he was the president of the club his senior year, and he laid a lot of groundwork for where the club is today. He, I feel like whenever he was on the team, he always really, he pushed to get sponsors on, you know, put them on their jerseys. And the people in the, in the club sports were like, you know, we can't do that. Because of the, I think it was due to copyrights, with the logo with Auburn logo, such. And now, they do that all the time. And they have sponsors all over their jerseys. And I don't know right now, they may start next years, or they might already do it now. But they might have scholarships towards bass fishing, I'm not positive, but, you know, they, they made a ton of money through those tournaments, and they just put it back in the club, and they would have tournaments themselves, and then they would send them for entry fees, those entry fees for those tournaments would be a lot. But anyway, so I kind of would think I don't really know the whole system now but but it's definitely grown a lot. And I think a lot of is due to the groundwork that Briggs laid and then also the the the popularity that it garnered through Jordan Lee and his brother Matt, and some of the teammates that Burke's had that were so successful.

Scott Benner 1:18:57
Yeah, I mean, listen, I have to be honest, I Googled Jordan Lee while you were talking and it pops right up. But professional bass fisherman Jordan Lee is a two time winner of the Geico Bassmaster Classic presented by Dick's Sporting Goods. Like that's crazy. I mean, it's not crazy. It's amazing, actually, that they got that off. Yeah, round that has turned into this.

Mary Martha 1:19:15
And Jordan has, you know, sponsors like Carhart, and Abu Garcia, which is a really big real company. No, I'm

Scott Benner 1:19:24
looking at him wearing a shirt here. Does there's no room on it for any other logos. He's doing okay.

Mary Martha 1:19:28
Yeah. He's doing really well. And, you know, he's a good friend of ours, and we're proud of all the work that he's done. But, you know, if two bad words wasn't as successful as he was, but, you know, he really enjoyed his time on the team.

Scott Benner 1:19:42
Well, it sounds like your husband's family sold a business to somebody who had pretty deep pockets. So I feel like it's going okay, right. Yeah. By the way, this led us to

Mary Martha 1:19:53
where we are today. So we're, you know, we're happy where we are and good for you.

Scott Benner 1:19:57
You're making me think I gotta make get one of these shirts for me with all the different sponsors of the podcast on it.

Mary Martha 1:20:06
Maybe with Omni pod and Dexcom and touchpad type thing for diabetes.

Scott Benner 1:20:14
You really listen to the podcast. Thank you.

Mary Martha 1:20:18
Yeah, I really wanted to come here you speak in Orlando, but it didn't work out. But

Scott Benner 1:20:22
I would have loved to. I would have loved to have met you. Yeah, maybe next year. I just recorded something with somebody from touched by type one earlier today. That you can, you'll hear coming up on the bold beginnings episode. But I would have loved to have met you. And now you're making me think I need a sponsor t shirt.

Mary Martha 1:20:40
Definitely. Yeah, I think we would. I think it'd be good.

Scott Benner 1:20:44
All right. Listen, you were terrific. Thank you for doing this. Did the nerves ever go away? Do you feel okay, at any point?

Mary Martha 1:20:50
Yeah, I think I got into a groove. Like said it just comes natural after a few minutes. Talking. Yeah, no,

Scott Benner 1:20:57
you were terrific. You really were. If there's nothing else, I'm going to stop. But please just keep me in the loop. I'd love to know how things go. It's just an interesting story, your son being diagnosed and you get into on the pod five so quickly, like, I'd love to know how it's going for you along the way.

Mary Martha 1:21:15
I'll definitely keep you updated.

Scott Benner 1:21:17
Thank you. Thank you very much.

Well, of course, we're gonna thank Mary Martha for coming on the show and sharing her story. We're also going to thank touched by type one.org and Dexcom, makers of the Dexcom G six and now Dexcom G seven continuous glucose monitoring systems. That little Dexcom G seven, where do you see it? It's a it's quite a thing. dexcom.com forward slash juicebox. Don't forget to check out the private Facebook group for the podcast Juicebox Podcast type one diabetes, but there are also plenty of people in there with type two and caregivers. Just it's a great mix of people. Thank you so much for listening. I'll be back very soon with another episode of Juicebox Podcast.

#862 Perry Como

Kim has type 1 diabetes and was diagnosed as an adult.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 862 of the Juicebox Podcast.

Today's guest is Kim or Kimberly, you decided what you want to call her. She is a type one diagnosed as an adult. She's a nurse, and she had a slow onset. These are the things you need to know. None of them will tell you why the episode is called what it is, but me me we'll get to it. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Consider this if you would, if you are a person who has type one diabetes, or is the caregiver of someone with type one as a US resident, consider going to T one D exchange.org. Forward slash juicebox. Join the registry. complete the survey. When you complete the survey. Your answers help type one diabetes research. And that great super simple takes like 10 minutes completely HIPAA compliant, absolutely anonymous. And it's easy. T one D exchange.org. Forward slash juicebox. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by ag one from athletic greens. Visit athletic greens.com forward slash juice box. When you get there, you'll be taking ownership of your health and choosing to start your day the same way I do with one delicious scoop of ag one from athletic greens. Athletic greens.com forward slash juice box. I'm gonna start the recording if your heart's racing, tell me what's going on now.

Kim 2:10
I don't know my heart's racing a little bit. I'm a little nervous.

Scott Benner 2:17
Let's talk through that, shall we? Sure. Are you up for it? What What? What you're like, No, I might not be up for it. But let's do it anyway. So

Kim 2:27
um, I don't know. I've just like listened to you, like so much the last couple months that like, I've had, like a conversation with you in my head so many times. And now I'm like, Oh my gosh, what if it doesn't come out? Right. So,

Scott Benner 2:41
okay, wait. So a conversation in your mind, like walking through this moment? Or just other?

Kim 2:49
A little bit like sometimes, like when I'm listening to you talk to other people. I like kind of thought about, like how our conversation would go.

Scott Benner 2:58
Okay. Let's start with that. Okay. Okay, we'll introduce you in a few minutes. I don't want to lose the thread here. Plus, you know, your name will be in the show notes and stuff like that people will understand. Okay, well, what do you think's going to happen?

Kim 3:17
Um, I don't know. I guess I'm just gonna tell my story. But I mean, I've heard you talk so many times that I know it's just gonna be like a conversation, but I don't know.

Scott Benner 3:29
You have no, you have no expectations of where it's gonna go. Are you? Are there things you're concerned about?

Kim 3:36
No, not at all. But I guess I have like the idea of my story in my head and I just hope it comes off, right. I don't know.

Scott Benner 3:45
All right. Are you from the Midwest? I am. I heard it when you said North Pole.

Kim 3:52
I'm from like, the suburbs of Chicago.

Scott Benner 3:54
Yeah, I was gonna say, Chicago. Ish. With my guests. I didn't want to be too specific. But that's alright. Well, okay. Let's go slow. How old are you?

Kim 4:06
I'm 31.

Scott Benner 4:07
Okay, are you married? I am newly married. Congratulations.

Kim 4:13
Thank you. Well, actually, oh my gosh, it's gonna be here next month. So I guess not that I mean, it's still nearly but yeah,

Scott Benner 4:20
stop playing that card. I just got married still time. There's still some lemon coasters on my registry. Nobody bought me. I love the lemons. Anybody. Longtime sweetheart met them on Tinder met her on Tinder. What do we got? Oh, yeah. Hi,

Kim 4:39
high school sweetheart. We've been together for 15 since 2007.

Scott Benner 4:46
Okay, hold on. It's 2022. Yeah.

Kim 4:52
We were together a long time

Scott Benner 4:53
you were together. That's a very long time. So if I subtract seven from 22 That's hard to do. because you have to carry on one. So I'm going to subtract 10 instead. And get me down to 2012. And then Riyadh set three. Does that verse? I don't Yeah, right. Yeah. So 2015 You got together?

Kim 5:13
No 22,000 sevens

Scott Benner 5:17
went the wrong way. It's okay. Nevermind 15 years. And you got married today. Now what happens? Is it camera Kimberly?

Kim 5:26
How do you like it? Um, either ones Fine.

Scott Benner 5:29
Listen, what are you doing to me?

Kim 5:33
I go by both. That's actually a funny part. My family only calls me Kimberly. But then most of my like friends and co workers call me Kim.

Scott Benner 5:41
Can I call you him? Yeah, that works. Great. All right, Kim. Where you hold now for somebody better? Why did you wait so long?

Kim 5:50
I'm mostly on him. But I mean, we were young. So I mean, that adds to the time. And then we went to college, he went to law school. And then he didn't propose until after law school. And like he went, you know, we went to just do everything on our own. So like, he wanted to buy the ring on his own. And so it just took them some time. But I mean, we were, we just had a good relationship the whole time. So it really didn't seem to matter too much. But then we had a COVID wedding. So we ended up postponed a year. So that added a year and to

Scott Benner 6:25
finally pull it together during a pandemic. Exactly. You don't need to be honest with me, but it'll be more fun if you are at times during the process where you just like, just let's What are you doing, like get to it? Or were you happy with the pace? Um,

Kim 6:43
I would say like the last year leading up to the proposal, I definitely was like, Alright, come on, is it gonna be this weekend and like, and I would, you know, ask them like, Alright, are you Let's go. Was there ever for the most part I was, I was fine with it. Did you ever have any

Scott Benner 7:01
concern that it wasn't going to happen that you'd wake up one day and be like, Oh, great. I'm 36. And this guy just left me. Oh, no, not at all. Okay. Well, then I see being well then then good for you. And you probably have your own little, like, you have like a career or a job or what do you? Yeah,

Kim 7:19
I'm a nurse. Okay. I'm a nurse. So I mean, I feel like looking back, like we definitely did it the right way. Because we we have like a nice house we bought on our own and we have you know, we both have good careers. We have nice savings. We are built to do like wedding the way we wanted to honeymoon the way we wanted to that any of that want to really have happened if we just got married younger. Yeah,

Scott Benner 7:45
she has plenty of good stuff to split up when you get divorced. Exactly. What a great thing to look forward to. Are you already looking around the house thinking like that table? How's the first year going? Is what I mean?

Kim 7:58
I'm actually it's it's going great relationship life. But it's been a very interesting year for me personally. So I don't know. It was a very interesting first year of marriage. All right. Tell me why. No, I mean, that kind of goes into like my whole story.

Scott Benner 8:18
I didn't know you were producing. Okay, hold on. Excellent. We'll go with your thought. Alright, so let's do this first. You're Kim. You're from Chicago. You're 31 How old? were you when you got type one diabetes? 27. That's four years ago. That math I can do for some reason.

Kim 8:36
Yeah, so it was four years ago. But I think the unique part and the part that like kind of goes back to me saying the last year or first year of marriage was difficult, because I only really started on short acting insulin. In September, so not even a year ago.

Scott Benner 8:53
Oh, so you had a very long honeymoon. Did they call you a lot? Or did they tell you you were tired? Yeah. So

Kim 8:58
they called me Lada. And yeah, I guess it was a honeymoon. But it was definitely prolonged by myself.

Scott Benner 9:08
And you do a lot of cinnamon burpees

Kim 9:13
did you know I did. I did like low carb, like extremely low carb and a lot of exercise. I mean, I was on Metformin. And then I also was on Lantus, so I wasn't like, completely like nothing. But yeah, I was not on short acting insulin until September when I finally was like, I can't do this anymore.

Scott Benner 9:37
So you drove your body like an electric car that had 20% left? Pretty much yeah, I'll just go real slow and see how far I can get and that and that you feel like you had an impact on it.

Kim 9:50
I did. And my doctor was telling me like, oh, it's gonna happen anytime like you know, your pancreas is eventually going to stop and I kinda like knew Whew, that I was like prolonging it. So it kind of felt like a, like a failure kinda if I didn't keep my sugars where they were at, like, on my own because I kind of really resisted the type one diagnosis, not that I didn't think it was accurate, but I just didn't want it because it is a whole different lifestyle.

Scott Benner 10:25
Yeah, did you begin to have what they call magical thinking? Like you were having more of an impact on it than you were? Or were you pretty consistent and understanding the reality of it?

Kim 10:34
No, I definitely was actually managing it, like my A onesies were like in the fives. And, but I just wasn't like, at the time, I thought I was being healthy. Because, you know, I was active, and I was eating healthy. But my body actually gave me signs that I wasn't actually healthy. And how so it just got to be? Well, I mean, I know you talk about artists period. So I'll just feel comfortable saying it. I lost my period for like, over a year. So that was like one sign that, you know, obviously, my body wasn't getting enough nutrients or everything it needed to have balanced hormones.

Scott Benner 11:20
Okay. And did it actually come back at some point?

Kim 11:25
It came back in December. So in September when I was like, Okay, I'm married. Now, I can't live this lifestyle. If I want to have kids, I'm gonna have to have a period and I kind of knew all along that, you know, to get a period back, I'd have to stop my intense exercise, I would have to eat carbs. So then that's where it kind of all unraveled where I was like, Okay, I need help, I need to go on insulin. I need to be able to eat normally I need to like not have to work out because there was i i love exercise. But there were plenty days in those years that I worked out to lower my blood sugar because I knew I was going to have more carbs than, you know, unlimited amount and or I knew like the night before I eat too much. So I would just like not eat breakfast do like an intense workout. And that's how I kind of managed and obviously my body didn't really respond well to that

Scott Benner 12:23
are two questions based on what you just said? How severe was your diet restriction?

Kim 12:29
Um I don't know. It's hard to like, quantify like, I like I still look back and feel like I was pretty healthy. I was not starving myself by any means. But I ate so much like salads and protein. Like I had so much protein a lot of like, low carb yogurts, a lot of vegetables. Fruit was like, yeah, if I could have some fruit, but I didn't have any, like substantial carbs for those four years. Like,

Scott Benner 13:04
did you find it restrictive? Or were you okay with it?

Kim 13:08
Um, honestly, I feel like 80 90% of the time I truly was okay, but I think I convinced myself like, Oh, this is healthy. Like, I'm eating like salads. I'm eating like I found so many, like low carb options like egg white wraps. And I mean, it's actually still stuff that I really like. It wasn't like, I was like, oh, like forced feeding myself like this food. I enjoyed what I was eating. And I was like, eating a lot, but I just none of it was carbs. And then I also kind of went a little bit like low fat too. Okay. Well,

Scott Benner 13:44
I'm not insinuating that you somebody can't eat low carb. I'm just trying to understand from your perspective, if this was something you were doing, because you were like, I enjoy this, or if you were doing it, because you were like, I have to do this or I'm going to get diabetes worse. And in that kind of pressure that might come along with that. Did you get super skinny? Were you ripped? How did it affect your body? Oh,

Kim 14:04
yeah, I was ripped. Like people were like, Oh my gosh, I never looked like super skinny. Like, I wasn't like anorexic looking. I might be um, I was actually normal, but it was mostly muscle. Like I started work like doing weight training and stuff too. But like, on my wedding day, like my arms were just like, super toned. Like that's what everyone said like, oh my gosh, what happened? What do you do? Like, you know, I just like, Yeah, I was pretty in shape.

Scott Benner 14:33
I'm just here to embarrass this guy next to me. Look at these guns. Yeah, exactly.

Kim 14:36
He actually though was like, you're getting to tone like and like when I started gaining weight back he's like, Yeah, I like that.

Scott Benner 14:45
Oh, look at somebody now somebody has an opinion not about me getting married that he was okay. drifting through I.

Kim 14:53
But yeah, but then I kind of went in the opposite extreme a little bit because I think once I started eating carbs and fat, my body was like, Ooh, what's the So I'm gonna hold on to it.

Scott Benner 15:01
Okay. All right. Yeah. Okay, well, so you found a balance your period came back, did management get more difficult at that point?

Kim 15:10
So it just like completely changed. Like, I felt like I described it as kind of being read diagnosed. Because like, now I had to learn like this whole new thing of, you know, insulin and mealtime, insulin spikes and highs and lows. Like I really didn't have many lows. Like, it wasn't like a concern. I mean, like, I didn't bring like low, like, treats with me everywhere I went, like, I was never really that worried about it. And then like highs, I kind of knew, like, it was based off of something I did, like, oh, you know, I ate a carb heavier meal that night. So now it was, you know, this time where it was like, Okay, I really have to find out this whole new management.

Scott Benner 16:02
Yeah, sure. No, it starts over again. I mean, you're not being helped by a slow onset, you're not being you're not being you're not being helped by ultra low carb, or all the benefit you get from the crazy working out. So did your workouts go back? I mean, they must have already if you softened your body up a little bit. I mean, that like, you know, I probably mean that in a way you're not supposed to say in 2022. But like, you kind of feminized your body a little more, right, like classically,

Kim 16:28
yeah, so I actually just like completely stopped working out for a month. Because I was so fed up with, like, not getting my period back. Because I was like, a couple months in to trying, you know, eating the carbs and fat and then still not getting it back. And then it's funny, because it's kind of like you in the sense of like, diabetes management, I found, like, online, I also found like, it's called like, period recovery. Like, I found that online too. And that's how I ended up getting my period back as compared to like, I went to a gynecologist, I went to my endocrinologist, I said, Hey, I'm not getting my period, like, this is abnormal. They decided to like, just put me on the pill. I mean, they did a lot of tests, and all of them were like, essentially normal. So they were really no help. They're like, just keep monitoring like care, go on the pill. And I just knew that wasn't right. So I kind of found my own way to recover.

Scott Benner 17:25
Okay. With when your period finally came back real like, oh, oh, this I remember this. What this part?

Kim 17:36
So happy about it for a while? Yeah, because I was just like, I felt accomplished that I like got it back.

Scott Benner 17:43
Good for you. Did you tell friends be honest, did you text one person you're like, Oh, my God, my period. Today is so exciting. Oh, yeah.

Kim 17:49
Several people. Three, my mom, my sister and then actually my sister in law, so they all kind of knew what I was going through. So I was really happy

Scott Benner 18:00
when I got it difficult to write. It wasn't easy. I'm not I don't make any like, but it's a it's a serious situation.

Kim 18:06
Exactly. And I just knew, like, obviously, having kids on my future is like, something I really really want. So it was kinda like, feeling like, that wasn't going to happen if I didn't figure this out.

Scott Benner 18:21
Kim, are there other autoimmune issues in your family line?

Kim 18:27
I'm not really at all. My dad's cousin does have type one so I guess Yeah, but you know, when someone's like, distant from you, you just feel like

Scott Benner 18:38
like it doesn't count. It counts. Yeah, exactly. Because this podcast accounts do you have any other stuff? Celiac or hypothyroidism? Hashimotos stuff like that?

Kim 18:50
No, and I've been tested for a lot of it

Scott Benner 18:53
too. You have other issues that you were that you would you were trying to get tested to find out what was going on

Kim 18:59
related to my eating habits but like no doctor really realized that but like, I would have like bloating but that was usually because of like constipation and because I wasn't getting like enough nutrients and then like my thyroid like they just tested a lot of things with like my period missing.

Scott Benner 19:20
Gotcha so so are you are you here to tell us that you poop more regularly now?

Kim 19:26
I do which is also another exciting thing actually. Your normal actually

Scott Benner 19:32
you know what plus not for nothing everybody can use a break once a day or more depends on your situation I guess where you just go in a room and close the door and you're by yourself for a second sometimes you're like oh, I have to go to the bathroom but this is great because I can get away from all these people. Oh, okay, well alright. What do you how do you manage now like before it was just this Lantis the Metformin the exercise, the you know, etc. But what do are you doing in the in, in present day?

Kim 20:05
So I'm on an omni pod. And I actually just started looping. And I listened to all of your tips. So I feel your management style is mine. And I work with Jenny. So I kind of just like went all in. But that's kind of my personality. I just when I like have something that I want to accomplish, I just go all in.

Scott Benner 20:27
Oh, well, I mean, I think that's obvious from the exercise thing. Because if you told me, I know myself, Kim, if you said to me, if you work out like a fiend, and eat nothing but salad and chicken, we can slow down this diabetes thing by three years, I'd be like, I don't know. I'm not sure I can do all that. And part of it is my age to like, I don't know if my body would keep up with rigorous exercise, to be perfectly honest with you. I tried to start riding a bike six months ago and ended up having knee surgery. So I'm just allowed to start riding my bike again, I bought this bike, it's lovely, right? And I put it, I put it behind me, it's literally right behind me, I had a space in the office, I'm like, I'm gonna put the bike there. Every once in a while I'm gonna get up from this desk. I'm gonna ride this bike. I do that. And then my knee starts to hurt. And then I had to have surgery. And now my knee doesn't hurt anymore. I think my I think they're going to clear me in a couple of days to go back to like, my regular activity, right? So if you were in a different situation, plus, you had a lot of pent up frustration from this boy who would not ask you to marry him for 15 years, I'm guessing.

Kim 21:32
Exactly. focus my attention somewhere else.

Scott Benner 21:35
Anything happen? Did your relationship shift after you got engaged? Was there like any I don't want to say this like this? Because I did either of you have that feeling like Oh god, it's over. Now I can relax.

Kim 21:52
Um, no, not that I and that's not standing out to me. So I feel like no, no. Okay. Well, we just went right into wedding planning but then COVID hit and then we postpone Yeah, no, nothing really changed.

Scott Benner 22:06
Gotcha. And you did you eventually have an in person wedding where people got to come.

Kim 22:10
We did we did it last July, which was kind of like a sweet spot of like, no more mess mandate and no more restrictions before what was that the Omnicon or whatever came back? So we can't we didn't have to make any address.

Scott Benner 22:26
Any chance you did it on my birthday? The 12 July 3. Alright, it's fine. Oh, July 4 weekend. Turn it no whole thing.

Kim 22:36
Exactly.

Scott Benner 22:37
Let's see what you did there. Okay. All right. So is the conversation going? Anything like you expected so far?

Kim 22:46
Yeah, I feel like I've talked about a lot of the stuff I thought I would

Scott Benner 22:51
good. Are you happy so far?

Kim 22:53
Yeah. Has your nervousness way more relaxed,

Scott Benner 22:57
because you're nervous this subsided.

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it has for sure be honest with the people listening. I'm famous to you. Is that correct? You are and now I'll be honest with the people listening, Kim that's ridiculous. You should not feel

Kim 25:52
serious like I'm probably like a super fan. I probably I listened to all 700 episodes in like four months. I used to listen to it like two times speed so I could like get through them all. And now I like still go back and listen. And I listed in different podcasts apps just so that I can get you more listeners.

Scott Benner 26:15
Now we're getting to something this is how everyone should be. Alright. Did you have to quit your job to do this? Or were you able to do it with your job?

Kim 26:22
No, it's literally like all I did on my free time as I grocery shop worked out. Anything dishes, anything I just was constantly listening to you. But it kinda like consumed me because I think like this person is I don't even remember that much. I didn't listen to much Christmas music at all and I love Christmas. But I always had the podcasts on instead.

Scott Benner 26:45
I'm the reason you didn't hear Perry Como this year.

Kim 26:48
Exactly. Maybe Christmas day I heard it but that's about it. I killed

Scott Benner 26:51
Perry Como. Oh, Kim. That could be your episode title. Wait, what did you say I killed Perry Como could be your episode title. I don't know what that means. Sure you do. Perry Como he sings all of your favorite Christmas songs that you don't realize because he's he's 100,000 That He's probably dead. Hold on a second. You really don't know who this is.

Kim 27:14
I know. I'm really bad with this but

Scott Benner 27:18
don't don't wear a white Christmas. Do you love a white Christmas song and old standard? Oh, yes. guarantee it's gonna be pretty cool. Now. Hold on second. Definitely, definitely him. He's probably saying song. Oh, song. He probably song. Most of your like favorite like Christmas standards. Okay, all right. In less Are you more of like a car person? Do you like that? See a Christmas album is incredibly good.

Kim 27:51
I'm working Mariah Carey and Celine Dion Christmas.

Scott Benner 27:54
Okay, have you ever tried to see a Christmas?

Kim 27:58
No, I don't think so. Please,

Scott Benner 28:00
in honor of me try it next year. Okay,

Kim 28:03
I will. Well, that means I won't be listening to your podcast. Well, you're

Scott Benner 28:07
pretty caught up. You should have a tiny bit of free time. I actually would like to talk about that for a minute. If you don't mind. I just saw another person online, get on the Facebook page and celebrate that they were caught up. This person was like I just listened to Episode 698 I am caught up and I thought wow, my first thought was I'm very touched. My second thought was I wonder how helpful it was to them. And my my, my next thought was, I hope the advertisers notice this happening. They buy more advertisements, and we keep making the podcast but how valuable was it? Let's let's lit it up a little bit. I'm assuming you found it supportive in a community such like sense?

Kim 28:54
Um, yeah, for sure. Because I don't really know any other type ones or like talk to type one. So definitely listening to other people's stories helps a lot but I for sure started with what oh my gosh, like the defining diabetes and the protests. Okay, so I kind of I listened in a very weird way I feel like I started with those and then like sometimes they would lead into like another episode that was just like the interview. And then like, I don't know, I jumped over around like a bunch and then once I was like, narrowing down to only like some that listen, I started like from the beginning.

Scott Benner 29:34
Did you have an experience ever? Oh, I'm sorry. Go ahead. Well,

Kim 29:38
I was gonna say it was like interesting that like I did not start it like episode one. So like going back and like listening to those are kind of like, interesting like to hear how it's like evolved from the beginning.

Scott Benner 29:51
Yeah, for sure. Did you ever find it a situation where you looked at an episode and you thought I don't think I care about this but you listen to anyway.

Kim 30:00
I think there was like a couple that I was like, not super like interested in, but I listened to them 100% Still worth your time? Oh, yeah, they for sure still worth my time because you just get a different perspective. And then you usually wouldn't throw in a little bit of management each one. So

Scott Benner 30:19
I do do that, don't I? Yeah, that's, I'm very happy to hear that. Also, I think the way you listened is not uncommon. I think many people come through, did you come to the Facebook page?

Kim 30:31
No, I really don't know exactly how I found you.

Scott Benner 30:36
Well, so but some people do that they hear about this thing that has these protests. And then you kind of, you know, do the defining stuff. Because I mean, you get your term straight. And then you go to the Pro Tip series, because you're looking for management. And then hopefully, it leads you to more stuff and you find stories that help and then there's management. I don't know how even how to say it, like people tell their stories, or I recant something that happened to us. And you can kind of pick it up through conversation I find easier than it being like just jam down your throat it to me, I love the Pro Tip series. I love that the I love all the series, actually. But I think if the podcast was just those, I don't think it would be as valuable.

Kim 31:21
I agree. I think listening to like, the interviews and stuff like really makes it very interesting. Like I've tried other podcasts and like, it's just a way to like interview style, like, Oh, thank you for saying that. And like stuff like that. And I'm like, Oh, I can't listen to this. I'm totally bored.

Scott Benner 31:39
Kim, I don't want to I don't want to slow you down here. But do you need to badmouth any other diabetes podcast? It's okay. My name can just be vague. They're terrible. Mines grades, something like that. Whatever you think don't let me put words.

Kim 31:53
Yeah, exactly. I mean, I can't even get through some of the episodes. I just have to turn them off.

Scott Benner 31:59
What a review. Okay, great. So I am thinking, one time somebody sent me a review that they saw for another podcast. And the review is hilarious. And it still pops into my head. Sometimes it's I don't I don't openly root for people's failure. I don't feel that way. I genuinely don't. I just want to beat them on my own terms, but I'm not looking for people to fail. I just want to win. I hope you understand the difference. So yeah, so

Kim 32:34
you're definitely winning. I think,

Scott Benner 32:36
you know, Kim, let's not brag. But yeah, okay. And so. So this review is just it's so funny. I, I'll share it with you when we're done recording, because it's like, I'll see if I can dig it up afterwards. Maybe I wrote it. But that'd be something you'd be like, Oh, my God. I'm just kidding. I usually don't write reviews. But this was a couple years ago. I honestly don't think that you would have had diabetes when this happened. That's how long it's stuck in my head for. Anyway, appreciate you saying nice things. And I'm glad I'm just I mean, being serious. I'm glad that the podcast worked for you that listen, there are plenty of people who could follow the path you followed and won't jive with me and and they might not, you know, they might not have the same experience. I'm completely aware of that. But I'm glad that you had that experience. So what did it lead you to do? Like how did because you're, you're a nurse you said?

Kim 33:28
Yeah.

Scott Benner 33:30
What kind of a nurse?

Kim 33:32
I work in the cath lab. So were they do like angiograms of like the heart and legs? Any arteries?

Scott Benner 33:39
Okay, super exciting, Kim. And yeah,

Kim 33:42
so if someone has a heart attack and their

Scott Benner 33:44
does it does it is are you in pressure situations like that?

Kim 33:48
Oh, yeah. Because we'd have to take like call and stuff so sometimes like I can get called in at like till in the morning and someone's like having a massive heart attack and they have to like, go and work and

Scott Benner 33:59
do you don't wire through a thing while somebody's yelling. Billy's Grandpop is dying Kim, do it like something like I'm sure they it's not like on television, but you have to actually feed a wire through something is that correct?

Kim 34:11
I mean, I don't do that part the doctor does but I'm I'm the nurse like in the room giving like the medicines and like, if something goes bad like doing CPR and like stuff like that,

Scott Benner 34:22
how often not you I'm saying but how often do you see somebody push in bed and they go Oh, whoops. Does that ever happen? Like wrong one?

Kim 34:31
Thankfully, no, never. I mean, I think I've heard of stories, but I've never experienced it.

Scott Benner 34:38
How did those situations impact your blood sugar? Does it go up?

Kim 34:44
Um, no, I haven't really seen anything like that maybe like a little bit maybe like 20 points but nothing like us arrow up like type situation. So were you not focus on like, really pay attention to my blood sugar and those mo means other than, like, I tried to make sure I'm going into it not like low or going low.

Scott Benner 35:04
Yeah, sure. No, that makes sense. But so are you kind of, by nature a level headed person? Or does the job just make you be that way.

Kim 35:13
Um, I think it's a little bit of a mix. But nurses definitely like, after you've been through something is the amount of times maybe like the first couple of times you're nervous, but after that, kind of just, it doesn't seem as like scary or intense when you've done it a couple times.

Scott Benner 35:32
So you don't have a bunch of adrenaline going while you're doing it. Know, for the most right now, that's kind of comforting to hear if I'm being perfectly honest, as the person who expects to have a heart attack one day.

Kim 35:44
But it has a lot to do too, with like the doctor in the rooms. Because if, I mean, the best scenarios I've seen is when like, the doctor is really calm and just able to like, give orders and everyone else kind of just stays calm to it's like we all know we have to do and you could only like do so much. So it's like you just have to do it without like panicking and like, running around. So if the doctor stays calm, then everything usually goes pretty smoothly.

Scott Benner 36:09
As the doctor goes, the situation goes. Exactly. It's interesting. And are some doctors panics like newer doctors, or? I guess probably yeah,

Kim 36:18
I've definitely seen that too. Yeah, not all doctors are equal.

Scott Benner 36:24
Definitely not. I. Yeah, let's not get into that. But yeah, that's definitely true. I mean, not everybody is equal, right? Yeah, exactly. So you find the podcast at what point in your management? So where are you? When you start listening? Are you still working out hard eating low carbs? Have you made the switch? Where do you find yourself?

Kim 36:45
I found you like, I think at the end of October, so I started like, insulin in like the middle of September because I kept telling my, my endocrinologist that it would be like really high in the morning, which is like new for me. And then she put me on a libre, which I was very reluctant to go on. Because at this time, I just like, didn't really like, want to accept, you know, maybe all this. So wearing something was not like exciting for me. But I was like, Okay, I just got to do this just to see like, what's happening overnight, or why I'm high in the morning. Then she put me on like a really low dose sliding scale. Like, if a greater than 150 Give a unit. And then if it's like 225 Like, I don't know, just really. So then I kind of like before I even found you was a little bit bold with insulin where like, I just I knew better that I needed more. I mean safely, but I just kind of was like okay, well now I have insulin, I'm just gonna start using it. But yeah, I think I was animali break for like, a couple of weeks. And I was just, it was the whole roller coaster thing. And I'm like, I was just frustrated. I'm like, I don't know what I'm, what I'm doing. And then I found you and things really started to smooth out.

Scott Benner 38:09
Cool. Can I ask a little bit about the not wanting to wear the libre or a device in general? Does it stop you from being able to kind of consciously or subconsciously pretend that you don't have diabetes?

Kim 38:22
Um, yeah, it definitely was a, that was a big part of it. I still like don't wear I'm not one of those people with them like, and they're mostly like, on my stomach or my low back. I'm still not like, loud and proud that I'm type one. But like a lot of people in my life don't even know. But I love my devices so much that I'm getting to the point where I'm about to like, show them off. Or like when I talk to someone about it. Like I'm super excited to show them and be like, Oh, this is what I wear now. And this is what I do. But it's just not like an open thing. It's got to be like the right person and timing, I guess. Yeah.

Scott Benner 39:05
Well, that's exciting. I'm happy for you. Like, yeah, that really is great. So you're getting more comfortable. Going to show more people use the word proud. That was great. So I mean, I That sounds like a, like an obvious trajectory to me. I get it. I mean, like, I mean, there's little kids are more like I got a thing. Look at it. It's stuck to my arm. You don't I mean, but adults. I mean, gosh, you were 27

Kim 39:31
Exactly. I felt like it was like it's a whole new life. You know, I knew life a whole different way. So

Scott Benner 39:37
you're incredibly you're incredibly patient, which we know for sure. Because you waited for, you know, so long to get engaged. So you you're like I can wait this out no problem. Did Did your diagnosis impact your relationship at all? Or did you find yourself concerned that it would,

Kim 40:01
um, I definitely found myself concerned that it would, I think it like, kind of impacted. Like, all my relationships I that, like upset me for a while because I just felt like, I like had this one at like flip my wife was like completely different. And then it's like, everyone else took a while to like, catch up with me or like I just kind of felt like a different person. So like, I felt like, it just changed my relationships. My husband, I, he's, like, always been like, the best person as far as like, understanding that he's pretty smart when it comes to like, medical things like he gets diabetes, like he understands, like, the amount of effort from my management. But he's also been the person that struggled most with, like, it really don't know what the word I'm looking for. But he's like, it upsets him. That's it. Like, he's really upset him like the diagnosis like, he just doesn't want this for me. He knows he's like, see me struggle like a lot with it. And I'm like a little bit of a perfectionist. So like, I need it to be perfect. So like when I'm not I am like, upset and down and like, it's hard for him to like, see me have to deal with all this. And he knows how much effort I'm putting into all this. And it just really like. He just, it makes him sad.

Scott Benner 41:32
No, I understand how you feel, how he feels. When I'm when my wife and I were more newly married when we were younger. Like if she had a problem at work. I was like, Do you need me to go beat someone? Like what do you need? You know what I mean? Like, I see how hard you're working. And I love you know what I mean? Like it's the same feeling really, like I know, you don't want it to go this way. I wish I could do something like obviously I couldn't go to an I mean, I guess I could have but I wouldn't have you know, like gone to an office and like intimidated somebody. But I felt like that. And your husband probably feels similar. Except there's no one to intimidate, right? There's not even anybody to yell at. It's yeah, you know, yeah, there's

Kim 42:12
no like, nothing you can do he just wished to send it in.

Scott Benner 42:16
Yeah, it's an idea. You're, you're mad at really, I mean, it's a reality. But it's, you know, it's a it's a faceless entity that you're that you want to, you know, take by the shoulders and shake. Yeah. But, um, I get how he feels? Did you worry for him, or were you too busy in your own kind of, like, mixed up ness to be concerned about other people around, you?

Kim 42:39
Know, I worried for him a lot. And it was kinda like, I took it on myself to like, worry for him. And then I like, didn't include him in a lot of things or like thoughts or feelings that was happening because I was trying to, like, protect him from being like, even more sad. But I've like worked through a lot of that. I, once again, I jumped all in with like everything and I got a therapist to I'm like, I don't really need one. But you know, screw it, I'm just gonna, like, just get a therapist and, but it's actually like, been so great. She's helped me a lot, like just realize things about myself and why I feel certain ways and she's helped me a little bit with like, you know, opening up more with my husband and just not taking, like, not trying to protect him so much from feelings that I think he's gonna have. Yeah, and the more I have opened up, I do realize that he he can handle it. It's just me always trying to like, foresee, like, his emotions, and then like protecting him from them.

Scott Benner 43:44
Yeah, I understand that. So Well, I think that's a positive step, but very much so. It's It's crazy, right, trying to manage your thing. And another person's thing when I was talking about this, the podcast is so strange. I was talking because things come up and they seem to come up when I'm recording. Maybe I'm subconsciously directing conversations that way. Anyway, I was talking yesterday with with somebody about, you know, I kind of made concentric circles. And I laid them over top of each other like those intersecting, you know, those little diagrams, I don't know, what kind of diagrams and

Kim 44:23
diagrams you think why they call pen diagrams, I don't

Scott Benner 44:27
know, like two little circles, they overlap and you kind of see things intersect in each other's lives. Right. And we were talking about how, how you're having these experiences with another person, and you're doing your best from your perspective to read what they need or one, but they don't, you know, most of their circles not overlapping with your circles. So they're having an entirely different experience away from you. And they may have other circles overlapping in that place and they know people that you'll never intersect with They have relationships and experiences and struggles and successes that you never see even though you're very close to them. And then you're trying to just say manage, but you're trying to interact with them in a way that you think is most positive when honestly, you don't even know the people, you're around constantly as well as you believe you do. And so it's up to them to share that stuff, so that your relationship can become more complete. And that is what you're talking about. But nobody does that. Mainly because who would think to? You know what I mean?

Kim 45:39
Yeah, I agree completely. Yeah, I definitely like putting too much thought into what he thought about instead of just letting do what he thinks about and just, you know, saying what I need to or doing what I need to

Scott Benner 45:51
write, because you're never going to be completely aware of the other things that can intersect his life. You can't be and so you have to give it to him, and hope sorted out, and if it becomes a problem for him, then he has to deal with that in his time. But if you don't have those communicative moments, they'll become both of your problems in the future.

Kim 46:15
Exactly. Yeah.

Scott Benner 46:17
I was a lot of gobbly gook talk, but I think it made sense.

Kim 46:20
It made complete sense to me.

Scott Benner 46:22
Thank you, Kim. Thank you, Ken, I love you. I really appreciate back when you said you listened to all the episodes that I was done, I would send you a certificate of completion. If I had one.

Kim 46:33
I think I shouldn't get like biggest supporter certificate.

Scott Benner 46:36
Do you think I should have like a digital certificate made up that says I've listened to all the episodes of The Juicebox Podcast and send them to people? Yeah,

Kim 46:43
I wouldn't hang that up in my house.

Scott Benner 46:45
I believe you might. I appreciate that, too. Kim, thank you. Maybe I'll just turn it into a t shirt so I can profit from it. How would that be?

Kim 46:52
I would buy it.

Scott Benner 46:57
I just want people to I don't really make that much money off those shirts. Oh my god. That is.

Kim 47:01
That is one thing that I have not looked into yet. I've done everything else. I've gotten the Omnipod the Contour. Next One at Dexcom done the survey for slipping my mind what it's I've done everything.

Scott Benner 47:15
You do the T 1d Exchange survey. And you use Jenny to right. Oh, yeah, I got Jenny. I think it's obvious to people but it's the unspoken part of my relationship with Jenny like Jenny doesn't work for me. I don't pay Jenny to make these podcasts with me. But you know, it's not we're not unaware that she may attract customers. So you know, and she

Kim 47:37
was extremely hard to get into. I only got lucky because I use like the side of it that which I mean, it wasn't Elijah true. I want I went to her because I'm like, when I want to have kids, I want her to help me manage that. So they were able to get me in with her. But other than that, like it was like very hard. They're like to get in with her. Yeah, I sort

Scott Benner 48:01
of the podcast kind of ruin Jenny in a way like, sort of like dating like a superstar. And then you break up and then the next guy is just the guy you met at the gym and you're like, it's not gonna work out like I already might, you know, I think we elevated Jenny to a point where it's hard to get in with her now.

Kim 48:22
Yeah, she's awesome though. Like I'm so happy I invested in that because she's just she's been that like, final like step where like, you know, management's pretty good. But then there's like, just like certain like, final touches that like she helps me like adjust things and I kinda like see where the adjustment might need to be but I don't know exactly what to do when she's awesome.

Scott Benner 48:47
And I used the wrong word A moment ago I said elevate like we I just I was able to shine a light on her so more people could see her that's all she she's who she is well without me you know what I mean? But but you know, just not everybody can know in the podcast has a pretty throws a pretty wide net so people can the who may be never would have known about her can learn about her song.

Kim 49:09
Yeah, I would have never known so I appreciate you for that. What are my shots

Scott Benner 49:13
here like my chances? Give me a percentage of getting a baby named Scott out of this.

Kim 49:21
Feeling you'd ask that? I don't know. I'll have to convince. No. I'll say possibly,

Scott Benner 49:29
but a cat. Can I get a cat?

Kim 49:31
I'm not a cat person. But maybe a dog?

Scott Benner 49:33
Not either. I mean, I'll take a dog. That's fine. No, nevermind. Well, you get a license plate that says juice box on your car. Maybe I would, you know like eight people have done that. Really freaks me out. I love it. But it's like I have pictures here from all over the country of people who got juice box license plates. They just like the letters say juice box. Yeah, in some way. Yeah. And they sent you know, I mean, I say this here because I think the person who wrote the article listens to this. So it's, I'm not bothered by it. But there was an article written by a pretty big diabetes blog that said, Look, people are so like connected with, like diabetes that they're getting juicebox license plates and the it was for the podcast, it wasn't just about diabetes. And pardon me when I read it. I was like, huh, all right. It's okay. And I just didn't I mean, listen, I don't really care. But But those people got those, you know, they sent them to me personally. And then they put them up on social media, they they they got them for the podcasts, which I was really touched by

Kim 50:38
might be some people listening to this, that might be mad that I said, I'm your biggest supporter, I think

Scott Benner 50:43
you might have to, what if we have to have a UFC style Fight Club situation one day, where you guys all fight to see who is the biggest fan of the show. I'll bring bananas and juice boxes so that everybody can stay on their game and really get in there and fight my son by the way thinks it's he's freaked out that their license plates for the podcast. Okay, I see him Look at me, like, why do people care about you? Like, it's funny, while while you're you don't understand, because you don't have kids yet. But 20 years from now, you will completely understand this. But it's, uh, it's funny to watch him look at me and try to regulate in his mind that someone would care what I say. You know, a little disturbing. But anyway, it's all part of having kids. Alright, so you're really not that far into diabetes? You said in in October, you found the podcast, maybe?

Kim 51:38
Yeah, what ended?

Scott Benner 51:41
What made you reach out so quickly to be on the podcast that?

Kim 51:45
Well, that's the funny thing is that I literally just listened to mostly like the pro tip episodes. And I was just like, so inclined to thank you. Because this was like, my first like, sense of relief. Like, I'd been messaging my doctor, I've been getting no like guidance of like, how can I make this better? I knew like, it couldn't be better. And I just couldn't figure it out. And then your episode just helped me like so much that I was like, I don't do this. But I have to reach out and tell him thank you. And I told you a little bit about my story. And then you responded like to come on the show. And I was so like, what I was like, Is this real? And I didn't even like, but then as I started listening to the rest of the episodes, I was like, oh, people do this. People think all the time. Like, I had no clue. I was just like, I was not trying to get on the podcast or anything. I was like, even kinda like, why would I be on the podcast? But then I was like, oh, it's like so many months away. And maybe I'll just sign up and see where I am when that time comes around. And then here I am.

Scott Benner 52:49
And you actually showed up that I say this all the time, the when people are there, like I never miss a recording. And I would say that with the exception of one or maybe two a year. No one misses their recordings. And yet they're six months out. So it takes from the time you say to yourself, I'm going to try to be on this podcast to when it goes live is a year.

Kim 53:13
And yeah, it was November right now it's June,

Scott Benner 53:16
June, it takes six months to actually get to your recording date, and then six more months actually get live. And that's part of the process, really, because if you're actually here on the day, when I open the microphone up, you really want to do this. And yeah, that's why you don't get a whole lot of episodes where you're just like, this is like sucks. You know what I mean? Like, it's people who really have something to say they've put effort into getting to it. And that's sort of part of my plan. But when you sent your original note, you just had so many interesting aspects that obviously you didn't know, were interesting, but I thought were the lot of diagnosis like the slow onset. Definitely people need to hear about that. You know, that you didn't know what you're doing. But you were a nurse, and that you had to go to a podcast when you're in a giant building full of doctors is interesting. Yeah,

Kim 54:08
the hospital setting like just has no idea about type. Right? It's very interesting. I mean, all I knew, too, was sliding scale. If blood sugar's are above 150. Then you give whatever the their sliding scale is. I do have to say, majority of the patients I dealt with, because I did do like the bedside nursing, it's called for four years. So I dealt with like a lot of type twos and like the amount of people's blood sugars, I would check, they'd be like 200 And like the people wouldn't even like flinch, and then they would just eat their lunch before I even came in with insulin and like, that's kind of like all I knew about diabetes, like management and stuff.

Scott Benner 54:53
Yeah, hospital management is not about being healthy. It's about staying reasonably lower. If You can, it's it's interesting how in the one place, you know, it's a conundrum in your head when you look at it, right? Because in the one place in the world, you imagine somebody would just be like, like a ninja with insulin and just know exactly what to do is is kind of the last place. And that's why that's why it's definitely

Kim 55:17
scared of insulin like the hospital like no one's trying to like bring blood sugar's down, like, too far too fast, too low, like see, like a 75. And they're like, scared. They give like a whole amp of like, dextrose. I was like, no, no, no, don't do that.

Scott Benner 55:35
Yeah, yeah, we were talking the other day, Jenny and I are making a new series that by the time your thing comes out, will probably be completed. But we're calling it bold beginnings. It's sort of like an overview for like, really newly diagnosed people. And we think we're going over this one example where somebody with their two year old had experienced this, like, drift down to stability overnight, and they were feeding the kid because they were like, Oh, my God. And I said, it's funny. If this happened to Jenny, she'd call me the next day and be like, Look how good I am at this and send me a graph. You know, but to a person who doesn't know what they're doing? It looks scary.

Kim 56:17
Yeah, it's interesting. And I mean, I definitely when I like started my own management, I felt that way too. But like, from like, doctors and stuff, you're kind of like, not given that guidance that that's okay. And normal. So it was like such a relief to like, come across you and just be like, reaffirm that, like, the way I wanted to manage was the right way. Or, like, you know, doable way.

Scott Benner 56:43
Yeah. Was there ever any thought that you might invite me to the wedding?

Kim 56:49
I see. I didn't know about you till after the wedding.

Scott Benner 56:52
You want to do it again? Just invite me then, oh, maybe I can't come, by the way. But I appreciate the invitation. I'm very busy. Actually, I am too busy. I'm too busy to leave this room. Which is becoming a problem actually. Just because I keep looking up and thinking. I keep thinking like, Oh, I'll get the podcast to this level. And then I'll be able to hire somebody to help with something right. And then it doesn't quite go that way. And people send me notes. I'll you know, the most common note I get after thank you is please don't stop making the podcast.

Kim 57:25
Oh, yes. I'll send you that one next. Right.

Scott Benner 57:29
And so I'm like, Oh, I won't, don't worry. But you have to support the podcast with ads. And so you have to make up and you have to make content like content is. I'm just gonna say king, but that sounds like an 80s movie like Dracula brothers maybe. And with the Coen brothers have been the 80s, they would have been the 90s. You know, you don't know who party como is like, you don't know, this doesn't matter. But but you know, it's a, it's a balancing act, right? Like you want the podcast episodes to be interesting and valuable. And they have to come out frequently enough that they can support the ads, so that the ads can support the production of the podcast. Because that's how you scale like the other like, here's, here's, here's something I'm not afraid to say out loud, that, you know, the other podcast might hear. You don't put up enough content. And they go once a week, if you're lucky, some go, you know, twice a month, once a month, some some put out six or seven episodes, call it a season and then take off for six months. Those are nice, like, that's fine. It's a way of doing it. But it's not a way to grow. And then there's this other thing that some podcasts do, where they'll put out an episode a week. And then a secondary episode, that's like four or five, six minutes long. Because they're trying to bump up their download numbers so that they can sell ads, right? Because think about it. If you have 1000 subscribers and you put out an episode, and every one of them listens, you get 1000 downloads. But if you just throw out this little like, throw away five minute episode, and those 1000 people are subscribed, well now suddenly, your 1000 people have created 2000 downloads a month, you've doubled your downloads. But what if you're really what have you really given them? You know what I mean?

Kim 59:16
Yeah, you never do short episodes.

Scott Benner 59:18
I don't cheat you. So I give you like good, meaty stuff. And I do it like it's a real radio show. You don't I mean, like, yeah, like a radio disc jockey doesn't come out on Monday and give you talk to you for three hours and then go, I'll see you next Monday. Like what the hell am I gonna do on Tuesday and Wednesday, and, and you know, and it's cool if you listen to Monday show, but not Tuesday show. I don't I mean, yes, it breaks. Kim, you're an exception and exceptional. But my point is, is that I don't expect for everyone to listen to everyone. I hope they do. And I actually think it would be valuable for them, but I don't expect it. I put stuff out there so that every week people have a choice, and they can say hey, you know what I don't want to listen to the guy who's a parent of a kid and also an orthopedic surgeon. But I do want to listen to this lady Monica, who's had diabetes since she was three, and she's 61 years old. Now. I'll listen to that one today. And then I like to do one episode with Jenny a week. And even that, is not it's not like, I don't record with Jenny and then give you the episode. They're recorded, like, well, in advance, they're thoughtful and considered, and we have conversations about them. And I don't know, I've heard other people's podcasts. And it seems like they turn the microphone on and just say whatever they're thinking, and I'm like, that's, you know, I don't plan in the in the traditional way, but I plan in other ways. I'm not just talking to talk. And anyway, I hope that comes through. Point is, I need people to listen, so that I can make more content that will help more people, so that the word spreads so that you because the idea of scope is to reach more people and help more people like you. Because I've lost count, I've lost count of the people who have told me privately or on this podcast, some of the things that you said today, and that's heartwarming to know that, you know, people are in a good place and not where they I mean, where would you be, if you didn't find helpful information?

Kim 1:01:17
I have no idea. I'd probably just be on roller coasters. Very frustrated every day. But now I can have my close to everybody calm rolling hills and flatlines. And I mean, most days, not all the time. There's still ups and downs sometimes, but for the most part, it's just like a peace of mind to be able to like eat what I want to eat and be able to just manage it.

Scott Benner 1:01:42
Do you find that? Like, psychologically, are you in a calmer place, not just your blood sugar line calmer?

Kim 1:01:49
Yeah, I think the two correlate a lot when when, you know, when you're up and down, you physically don't feel well. But mentally, it's just like, exhausting.

Scott Benner 1:02:00
Yeah, I understand how I see it here. And I hear other people's stories. So I'm happy. I'm happy for you. I really am. It's funny, because Recently someone asked me to, like do a talk, I could do it in my sleep. It's like 45 minutes long, I could give it to you right now, if you said do the talk, I'd be like, boom, I can pop it into. And it's not like I somebody asked me to give it to an organization privately. And I did. And days later, I sent it out. I said, Hey, what did you think? And it was given to somebody in the organization and some younger people who had diabetes. And the older person said, Well, you know, you didn't really say much that I didn't know. And I said, No, I recognize that you are your sleep steeped in this, you You understand all this, but these are the things that that people don't hear from doctors or or share with each other, even when they sometimes figure out how it works. And it's still great information. It really is. It's not this, you know, it's not, it's not where, I don't know, you know what I mean? It's not where we're at treasures buried or anything like that. But, but it's stuff that people need to know. And nobody tells them and when they do tell them, they often do it in a way that is so freakin boring that nobody can listen. And you know, so I think that's what this did. But it was interesting. I'm sorry to hear

Kim 1:03:21
it all throughout your podcast, so it's like it just really like sits with you. And it just, I don't know, it's easier to just incorporate it when you hear someone else like kinda just saying it as part of their daily life.

Scott Benner 1:03:34
Yeah, I did say to the person those like the talk is not meant to fix you. It's meant to make you interested enough to check out the podcast. I can't in an hour explain diabetes to you. I've done it before. I've said it to people who had type one for so long that you know, the talk kind of like connects a bunch of circuits for them and though all the lights come on, I have seen that happen. But for the most part, most it's just going to make most people think hmm, so that's possible. I should check into that. You know, so anyway, I feel like it. I don't know, this is the best format I can figure to do it. I agree. Like you. What have we not talked about Kim that we should have

Kim 1:04:20
I feel like we talked about mostly everything. I did have like no bad experience, but like changing my endocrinologist I guess just like talking about endocrinologist and like how sometimes they just don't really know how to manage and you have to like just find the right one. I had an endocrinologist like the one that I was with for the three years it's just like frustrating looking back that like she didn't see that okay, she lost her period like she never looked into like I went to her for that and she checked my like, you know all these tests, but like never looked into To Hey, like, what are you eating? How are you staying in a five a one C with, with no short acting insulin like she never did any of that she even like she was always trying to like cut things back cut my Lantis back she never like she put me on the libre without like, talking to me about like the Dexcom. And I didn't really know enough yet. And then it was actually funny too. When I went on the Omnipod I like just went through Island New pods. So they like, I guess they contacted her or whatever and got a prescription. I had the Omni pod at my house, went through training through Integrated diabetes had the pump on for like three days and I get a message from her saying, Hey, I got a script that you want to start Agni pad. I don't know if that's the right pump for you. We it was like a very like condescending, like, email about like, this isn't right for me. And I just I was so upset because I was like, already nervous about like, you know, being a pump and trying to figure this all out on my own. And then she doesn't even know that I'm on it already. Like, I don't know. But yeah, it just kind of frustrating. That was like a frustrating part of my management was to not have like the support from a doctor

Scott Benner 1:06:19
Jenny said this to me recently. She said, you know, just because someone's an endocrinologist doesn't mean that they manage diabetes all the time. Yeah. And I was like, oh, geez, I never think of that. She's like, you know, endos do a lot of different things. You got to find a practice who does diabetes, that's the first thing. And then the system, which is listen, every system is really just people, right? And things get set up in a certain way. Nobody can. Nobody can imagine everything the system needs, right. So a system gets set up and then you build onto it slowly, you add a piece, you add a piece and before you know, years later, it's bastardized, it just you're involved in this system that doesn't work. Everyone who uses it knows it doesn't work, but there's no way to fix it either have to blow it up and start over. or live with it. And what you just described as people living in a in a, in a system that's been added on to too many times, like how could you have the pump on and your doctor be like Hey, I hear you want to get a pump?

Kim 1:07:22
Yeah, I was I was seriously shocked by that message. I just was like, another funny thing about her was the first like I it was like a Zoom meeting with her and she was like looking at the my libre. And she wasn't like happy with the amount of lows I was having. Even though I wasn't having a lot the libre just like bounced around a lot. And it counted like a 67 is low. So I think my percent was like 6% low or something like that. But I was never having like severe lows. I was just you know what dip into the 60s sometimes before dinner. But anyways, she pretty much like you know, like, did the whole like thread about insulin and how it could kill you and she's not gonna be able to prescribe me medicine if like, I have too many lows. And then it was just it was ridiculous, but and then I just was like laughing to myself when I got off the phone with her because I was like, this woman's so worried about my lows, and she's never prescribed me glucagon

Scott Benner 1:08:33
these lows are gonna kill you, honey. What are we gonna do about it? What are we gonna do about it? You can't

Kim 1:08:41
it's just so upsetting because I'm like, the type of person that like, I want to, like, you know, do the best I want like A's I want like to make the teacher happy. So like, even though like I can rationalize that I knew my management was fine. I knew I was not in any danger. Like, I had the mind the CGM. And so like, I wasn't worried, but it's still like a bad feeling to like, hear that from a doctor and I feel like I felt I had being an adult. I'm like, whatever it is what it is, but like it made me feel bad for like these parents and like, if they have that when they have like a kid. I feel like that's just so like, more traumatizing and it's like, it's scary. I feel bad.

Scott Benner 1:09:21
Yeah, no, I mean, it's nice of you to be concerned for other people. And trust me that's like a common feeling around diabetes when people figure things out the next thought, a lot of peace and people have as well what about everybody else? But I mean, how fascinating is that? That her answer for stopping your lows was not giving you insulin? Yeah, you know, if you don't stop having these 67 blood sugars, I'm going to murder you. Oh, thanks. A lot. What a clear thinker Kim.

Kim 1:09:50
Yeah, so I found a new entrepreneur. Yeah. How

Scott Benner 1:09:53
long did it take you to actually leave?

Kim 1:09:56
I'm pretty much left quick because I mean, I stayed with her throughout this whole like honeymoon phase. And then she prescribed insulin in September. And I got to I saw her like one more time after that tried to message her a couple times in between about like still having highs in the morning. She was like, no help at all. Until then I met with her and like January, and that's when she gave me the low conversation. And then by April, I had a new endocrinologist. And she was she was awesome. I mean, I've only met her once so far. But she was happy with my management. I was 5.3. And she didn't say anything about lows. I mean, she could see my Dexcom and she was like, You're doing great. And she gave me she gave me glucagon. She so yeah, she was good. I am a little bit nervous, though. Like, I still do get like nervous about like, I don't know, like so I started looping and I'm like, oh my god, I never talked to the endocrinologist about this. Like, what? What am I going to tell her? Like? It's I don't know. I don't know why I have those thoughts sometimes.

Scott Benner 1:10:59
What's the saying? It's easier to ask for forgiveness than permission. Isn't that right? Yeah. There you go. All done. Perfect. All right. Well, I'm so afraid that your your episode is gonna be called something about Perry Como but let's see what happens. Are you happy with how this one?

Kim 1:11:22
Yeah, I'm extremely happy. I feel like we, we talked about everything I want to talk about

Scott Benner 1:11:27
good. Sometimes I get letters from people afterwards. Like I really should have said this. And I'm like, Okay, we said a lot. You don't need to say everything. It's fine. Some people like I have to come back on. I'm like, No, you don't. You're good.

Kim 1:11:39
Now, think about it, though. Actually, that might be a good title, because this will probably come out around Christmas. Right?

Scott Benner 1:11:45
See, yeah, I killed Perry Como. It's perfect. Perfect. Kim, i i Thank you very much for coming on and doing this. I really appreciate you sharing your story. And I hope that you know, he didn't mind that we talked about your your wedding and stuff like that to help you get like I was using that to calm you down. You know that right?

Kim 1:12:05
Oh, yeah. No, I appreciate that. Uh, did call me down. I just wanted to thank you again, for all everything you do, because I really wouldn't be where I'm at. Without you and your podcast.

Scott Benner 1:12:16
That's very kind. I appreciate it very much. You're You're welcome. I think I'm supposed to say You're welcome. You're welcome. Yes, yeah. I I'm trying so I still struggle a little bit with it. Like, you know, you're like, Oh, that's nice. What you mean is Thank you. Thank you. Seems weird. So why don't I just go the other way with sarcasm Kim, you're I am terrific. I agree with you. How's that? I

Kim 1:12:40
like your sarcasm. I feel like the first couple of times I heard it. I was like, not really sure. But I still like the episodes. But like people who complain about you, I just don't think that they've listened to enough episodes. If they listen to you and understand your sarcasm, then everyone would just love it.

Scott Benner 1:12:57
Are you saying to my wife that if she just listened to me she'd be happier. It feels like Yeah, I hear you too. I'm gonna play this part for now, but listen, sarcasms that we went over it right? The podcast is enjoyable for I mean, listen to for a great many people. I can see the numbers. It's a lot of people. So it's, I know it works. And you talked about how getting fed information dry ways is it's hard to get through. And that when people are fake and phony that's hard to listen to. Like I know what you're talking about this big voices like Oh, thank you so much. And you are wonderful. Oh, no, you're wonderful. And before you know it, we've been talking about how wonderful we are for three minutes. Like are we gonna say anything substantial here ever, please? Yeah, yeah. Oh, I'm gonna stop the recording now. And then I'll find you that funny review about the other podcast. Okay, yes.

A huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G voc glucagon.com. Ford slash juice box. You spell that? G VOKEGLUC AG o n.com. Forward slash juicebox. I also want to thank Kim or Kimberly, it's up to you and ag one from athletic greens, reminding you again athletic greens.com forward slash juice box head over get started. And if you're looking for community around diabetes, check out the private Facebook group Juicebox Podcast type one diabetes. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Who is Perry Como come on

#861 Best of Juicebox: Diabetes Concierge with Katie DiSimone

Episode 227 Diabetes Concierge was first published on April 30, 2019. Katie DiSimone is on the podcast to explain what the heck looping is and how it can change your life with type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 861 of the Juicebox Podcast.

Today, on Best of the Juicebox Podcast, we'll be revisiting episode 227 was called diabetes concierge and aired originally on April 30 2019. Back in 2019, I had been approached by a listener of the podcast, who asked me if I had ever considered looping for my daughter. And I wanted to learn more about it. And Katy De Simone was kind enough to come on the show and explain it to me. I didn't keep up with Katie after that, although I was very aware of all the hard work that she put into the looping community. And then I remember one day, I think in 2020, probably spring of 2020. I noticed on Katie's social media that she had like gone on this health kick and was working out and doing so like wonderfully in it. It made me track her progress. So I was keeping up with Katie on Instagram. And then one day the pictures went from workouts, to a brain scan. And that's when I learned that Katie had a tumor. She shared her experience right there on Instagram. And I'm looking now at her account. And that post was put up just at six weeks ago. I heard the bad news yesterday that Katie had passed away. And while I didn't know Katie personally and just had this one interaction with her, she was always just a very impressive person from afar. The work that she put in for loop for everybody, including her daughter, who has type one diabetes is immeasurable. Her impact on my life, my daughter's life and have many of you. It can't be properly accounted for. And so I wanted to run this episode today in honor of Katie, her family, and her her good work. Hello, and welcome to episode 227 of the Juicebox Podcast. Today's episode is sponsored by the Dexcom G six continuous glucose monitor, by real good foods, and of course dancing for diabetes, you can go to dexcom.com forward slash juicebox. Dancing the number four diabetes.com or real good foods.com To find out more about the sponsors. Now when you go to real good foods that calm and you place an order, you use the offer code juice box to save 20% on your entire purchase.

As you well know nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And you should always consult a physician before becoming bold with insulin or making any changes to your health care plan. Today's guest is Katie De Simone. And you're going to want to hold on to something because I think what I'm about to say next is going to take you by surprise. But one of our listeners Gina brow beat me browbeat me online into trying the loop now that it's available for the Omni pod. And so I got Katy on the show because she is about the loop easiest person. That doesn't sound right. She's really entrenched in the world of looping. She's not loopy. She's actually delightful. Anyway, Katie came on. She explained to me everything about looping and I had a bit of an epiphany that I thought it might actually help me help you. So I said, All right, let me try it. So sit back and relax and listen to the conversation that I had with Katie that made me think. Alright, I'll give this a shot.

Katie DiSimone 4:15
My name is Katie De Simone. And I work for tight pool now. And I'm also part of the DIY loop group. So I have a little bit of dual hats in that respect. And so sometimes I try and clarify which hat I have on.

Scott Benner 4:31
Which one are we wearing today? Both one?

Katie DiSimone 4:34
I'm imagining probably mostly the DIY Katie hat. Because loop has had a very exciting announcement this week that it now integrates with the Omni pod.

Scott Benner 4:45
Okay, so if you have to change hats, just make an announcement before it happens.

Katie DiSimone 4:49
Yep, we'll do.

Scott Benner 4:51
Katie, I'm gonna give you a tiny bit of background on me and what I think is probably the feeling of more people than should be and And then we'll move from there. So my daughter is going to be 15. This summer, she has been using it on the pod since she was four. And because I think greatly, because of the things we talked about here on this podcast, her agency has been between five, two and six, two for over five years. She doesn't have any diet restrictions whatsoever. And we just kind of, you know, figured it out a little bit. But I also want to stay, I want to ride the wave, you know, on the crest of the wave, I don't want it to crash down and then just be, you know, going back out to see you. And I'm like, What's the loop? So I'm excited. I've said before that the documentation scares the heck out of me. But I got cajoled harshly by somebody online. And they were like, try, just try it. Just try it. And then she finally said to me, look by the Reilly link, and if you don't like it, I'll buy it from you. So Gina, this episode is for you. And for everyone else. I think we need to just first kind of it as simply as possible, let what loop means make sense to people? Can you do that?

Katie DiSimone 6:09
Yes. Basically, loop does what most of the general population I call a muggles, the people who aren't living with tea, Wendy, what most of the Mughal population thinks happens for tea Wendy. That's what loop does is that they see if you explain to a muggle that you have a continuous glucose monitor that provides you information about your blood sugar every five minutes, and you tell them that you dose insulin off your insulin pump based on your blood sugars, they assume that those two systems talk to each other. And that's, as we all know, pretty much not the case on any commercial product. These days, with the exception of very recent developments, relatively speaking of the 670 and Basal IQ, which does half of that equation, it responds to low blood sugars. So what looping does is that it takes that and closes the loop. In other words, your insulin dosing will actually be based on CGM data without having your brain involved in that or your fingers involved in making pump button pushes. So in the simplest form, that's what it's doing is that affecting any given time, you would have looked at your CGM data and known that you had eaten and thought, maybe I should give a little bit more, or I should suspend. Or I should decrease my insulin. That's what loop is doing for you. Now we're loop itself with a capital L. As opposed to a little case L of sort of the general concept of looping. What loop app itself does is that it puts all of that into a really simple, wonderful interface of an iPhone app. In all the traditional ways you love Apple products for their ease of use that you can just look at it. And it makes sense for what you're looking at. That's what loop is. It's an iPhone app that sits on your app where you can easily enter all of the information about the food you're eating the Bolus is you want to give where you're headed, what your settings are, it's basically all moved off of a device that you have to fetch out from underneath your sweater under your dress. It's all now on your iPhone, where you interact with most of your day anyway. And for my kid, the iPhone is almost an extension of her hand, because she's 16. She is on Spotify and Instagram and all of those other kinds of things. And so bolusing from her phone is a really natural place to put her diabetes management. For adult users, most of them are really psyched on the watch for bolusing and entering carbs. It's super discreet. You can do it at a professional meeting, and nobody's going to ask you, are you being rude or somehow ignoring things you can take care of it all on the watch.

Scott Benner 9:11
So most of you know that I'm speaking at the dancing for diabetes touched by type one event on May 18. in Orlando, Florida. If you're in the area and you'd like to come, I don't think it's too late. Check out dancing for diabetes.com. But if you can't make it, dancing for diabetes is like I don't know auctioned me off or something. All you have to do is go to dancing for diabetes.com Hit the Donate tab, make a suggested donation of $10. And when you do that, your name will be like in a hat. I'm gonna pull from that hat while I'm down there on the 18th. And I'm gonna pull up three names two of those names. I'm gonna have a 45 minute phone call with you. And one lucky name, one hour phone call and a 30 minute follow up and if you don't want to use the phone, we could FaceTime we could Skype, I could be out the window smoke signals. I don't care. Now listen, if you don't want to talk to me on the phone, I appreciate that but don't embarrass me okay, you hear what I'm saying? You guys gotta get on there and do this so I don't look like a schmuck. The expected numbers out of this the whole like Scott phone call thing Imagine if three of you do this I'm gonna look like an idiot. Alright, so don't do it for me don't do it for the cute kids dancing for diabetes. Oh, you know, do it for me do it for me so that I don't look identity. To have your name including this opportunity go to dancing for diabetes.com click on the Donate today button between now and May 17 2019. Make a suggested donation of $10. And be sure to mention juicebox in the notes. If you don't have internet access, or flat out just don't want to make a donation but you still want to submit your name. You can do it by mail. I mean, God bless you if you're gonna do that that's like a stamped envelope and I don't know what you're even writing there juice box and the thing and it's got to get there by this. I mean do it if you want. I'm just saying a lot of work. I hope to see on the 18th but if I don't, I hope we can talk

in its very basic form, all the things that we all sit around thinking are always simplified for us right like I think much like most people like artificial pancreas will come one day and what that means is my glucose monitor will talk to my insulin pump it will make decisions for me and I won't have to think about it. And that really is this it's this in real life. It's It's your right now it's Dexcom right you loop works with Dexcom CGM

Katie DiSimone 11:28
correct loop works with all the Dexcom CGM, so long as the g4 has share capability. It also works if you're on one of the older Medtronic pumps, it works with the older Medtronic CGM systems.

Scott Benner 11:42
Gotcha. And this is quite literally something that was done. I don't know what the word is. Is it a consortium of people like how do you think of it when you Is it a a cabal? Are you guys which is like what is? What is it exactly? Like? How did this how did this begin?

Katie DiSimone 11:58
The story started long before I ever got here. And it's a web of people in the most simplistic of forms, and it'd be too hard to name everybody who's been involved. But basically people across the nation were frustrated with where the state of diabetes gear was that it wasn't collecting information for the patient that it was residing in silos separate from each other and not being integrated. And so people started taking actions smart people who had the capabilities of and I use the term hacking, because that's what comes to mind for most people. But not hacking in the nefarious way. Hacking, as in I know my information is in here, I just want to see it, I want to use it to better. Basically all these people across the country, we're all working on separate parts, that all ended up through the wonders of internet, finding each other and they all moved closer together. So people who are working on understanding that Dexcom and making that more available before share was around, met with the people who were decoding the pumps and people who were doing algorithms, and they all started to form together till eventually, these closed loop components were all close together, okay, where my involvement came in, was my daughter was on Omni pad for about a year and a half after diagnosis, and was doing great with it. And then she started high school. And when she started high school, she told me Mom, I want to wear tube pump. I said, Well, why do you want to wear to prom? This is the opposite of where most kids go. She said, I want my diabetes to be more visible. Okay. It's an odd thing to request at high school time, but I'll go with it. And I said, Well, I've been stalking the internet. And I saw that these really smart people over here who are working on this open APS system will get on an older pump and I'm gonna have to get an older tube pump. So if I could find that maybe I could get two birds with one stone and automate some insulin delivery and that might help make our lives easier. So that's what that's how I ended up here was that my daughter wanted it to pump I knew I was gonna have to buy a used one mine as well. But the problem at the time was that the US pump system this open UPS system at the time was really bulky, and would require a lot more than a teenager was willing to give it time and attention to at the time. It's gotten better. So I was looking for small open APS systems and I was searching the internet frantically going, somebody must have worked to miniaturize this. And that's when they came across loop, which is a different system than opening EPS, but conceptually still the same automated insulin delivery based off your CGM ratings. So when I saw that it fits on a phone and it's a really small sleek form factor, it's that, yeah, I could do that. And when I got there and found where the project was, didn't have a whole lot of information about how to build it. So I spent a lot of time with Google, and putting myself out into uncomfortable spaces of trying to figure out how to build an app onto a phone when I've previously never done that. And with some help of some very nice people on the internet, who answered my questions, and Google, I got a built. And I was so excited. And it worked so well for us that my involvement that I committed to as a kind of pay it forward movement, is that I would write the documentation so that other people could come after me and be successful with it. So

Scott Benner 15:43
you're the translator you Yes, you took complicated, technical, almost geeky and weird and turned it into something my brain can absorb? Yep. Is that what's at the loop kit? Dot GitHub dot whatever dot fours? Yeah,

Katie DiSimone 16:01
even that, even that I wanted to simplify. So it's, it's loop docs.org LOPDOC s.org

Scott Benner 16:11
O P, I'm gonna write to a DSC s dot o RG

Katie DiSimone 16:15
and be intact. It's really, you know, honestly, I totally get it like when you when you come into something technical. From the first start, as soon as you tell somebody, you're gonna build an app onto your iPhone, half the audience leaves the room and goes, I can't do that. And what I promise you is that you absolutely can, it is really, really not as hard as hard as it seems. It's super, super simple.

Scott Benner 16:42
My understanding here would be that this is not, I mean, this is not a medical device company, right? That's giving you this, basically an algorithm that's going to tell your CGM gonna tell your pump what to do with the information from the CGM. So no one can take responsibility for this. If you do this, it's it's on you right now. It's it's do it yourself in the most most meaningful way you are doing it yourself, no one is helping you if something goes wrong, it's all on you. It's a decision you're making on your own. And it says that very much, right? I'm just saying now, it's the first time I'm looking at, at loop. docs.org says you take full responsibility for building and running this system, and you do so at your own risk. So if you want to get involved in this right now, Katie is going to tell us now about how to get it set up because and I know everyone who listens is going to be thrown off by this. I'm going to try it. And that trust me, Katie, you have no idea. Everybody's just like no, Scott said he was scared and he can't do it. And trust me, I am scared and I can't do it. But I think that by having Katie on the podcast, I now have a Sherpa that I can bug. I am going to figure out how to do this. And then I'm going to report back to you guys how I did it. And then I'm going to report back to you if I like it and whether or not we're gonna stay with it or not. Because Katie, while I believe that this is incredibly important for the large majority of people with type one diabetes, I think they're going to have results that they've just never seen before. We already have really good results. So if this improves my life, then I'm all for it. By the way, like I'm not I have no, I have no ego about this. I don't need to be making decisions about Temp Basal increases and Temp Basal decreases, like you know, throughout the day, I don't care if I would like it to just work. And so I'm super excited to try it.

Katie DiSimone 18:32
That's, that is, you know, you you just said something that kind of triggered in me. A funny part. But it took me a long time. We've been looping for two and a half years, roughly. And I've had an evolution and how I appreciate the system. When we got on it. We were fairly low carb only because it was the only way we slept at night. We just you know, we were going through an evolution we were only a year and a half in. It's a teenager, she's changing. We're changing. It was very, very hard. So we got on loop. And it was at the time, we were mostly focused on E one Z and blood sugar control and all of that kind of mindset. And then she became a tea and she wanted more independence and I wanted more independence. I didn't want to keep talking to her about diabetes. This was silly. That's just we had a life to live. And what looping has done is is made me realize just how much potential damage I was headed into with navigating that very complex transition of an independent type one team. And loop gave me back the ability to understand how to let her live her life and how capable she was and how she could do this and that the other Part of relieved for me is part of the reason I was doing so much help on it was I felt like if I shifted that responsibility that she was asking for even though she was asking for it, I still felt a huge, enormous guilt that I was somehow saddling her with now this enormous responsibility. And seeing Loup work for her literally like a like a, like a nanny, like a personal assistant that carries the umbrellas of the rich and famous stars. And, you know, the movie festivals kind of thing. Like, who can afford that? That's how Lupe has been for us is that it's this umbrella carrying personal assistant for her. That makes that shift over so much easier.

Scott Benner 20:41
Yeah. Insulin concierge? Yes.

Katie DiSimone 20:44
That's a great, that's a great term for it. And so,

Scott Benner 20:48
Katie, patent pending?

Katie DiSimone 20:49
I think you should. That's your new that's a new hashtag, you should, should do that. Because it really, it redefined how our relationship was. And it took a lot of diabetes conversations off the table, which I'm so grateful for. And it wasn't at the expense of good. Anyone see results or all of that kind of stuff. It was less effort, less lows, great a onesies and less conversations. It was win win win all the way around. Yeah.

Scott Benner 21:16
So we have. So here's where my excitement lies as I sit here and just look at this image that you guys have up on the screen of the the loop app on an iPhone. So I'm not even though there are a couple of people who like to say that I have a lot of ego and I brash about, like how well we're doing. What I'm saying here is, I have gotten this figured out, my daughter doesn't go over about 151 70, more than about twice a day, she doesn't get dangerously low more than maybe about once a year, you know, we don't get under 70. Very often, she's mostly between 70 and 120 give a lot of stability. But it's come through these things that I'm now realizing as I'm staring at the algorithm, there are these things that the algorithm understands mathematically that I understand. In English, I don't know if that makes sense or not. And, and so I'm super excited to see the feedback from the app as far as like active insulin, insulin delivery, and glucose levels. Because I actually think that this app can take me farther in my understanding that I am and I really thought I was about at my peak. Honestly, I didn't think there was much more I can understand about this. But seeing this information, I think I can mine a lot out of it. And and, and really go on to be able to describe to people who don't have this app, my ideas but in better detail, and maybe more easy detail to understand some bumps. I'm getting excited. So this is good. Okay, so let's go through a couple of things

I need a Dexcom I have that. I need Omni pod because it works with Omni pod. Now I have that and then I need something called a Reilly link and as soon as you say that in the past my brain would go okay, I'm out Forget it. Right. But but but let's let's make it let's take away Riley link. And I don't know did you see Spider Man into the spider verse by any chance? No, I have a tastic movie you really have to make time in that one of the Spider Man men Spider Man's one of the guy's calls something electronic a goober he says there's always something like this in every one of my problems. I just call them all goobers. So let's call the Riley Linka goober. Okay, and so. So the pump has to get information from the CGM and your phone needs to talk to everything. The problem is, how does a phone talk to an insulin pump? It talks through the goober so that's it the goober is the bridge the Riley link is the bridge. Don't be scared by it. It's a thing that makes a connection in the future. There'll be there'll be some the I guess the Bluetooth pods right when for Dash comes out and then you guys will come out with something where that's right in the app and then the Riley link will be gone at some point, right?

Katie DiSimone 24:20
Yeah, so the DIY Katie says the Riley link is necessary because the pump speaks one language and your CGM and phones speak a different language. Gotcha. Your your phone and your CGM are speaking Bluetooth. There are over there speaking that one language your pump is speaking with radio. And so those two languages need a translator. And that's what the rilink does is it bridges or translates between those two different languages. So what tide pool Katie's hat is saying is that the next phase of looping will be when you don't need that translator and that the pump is speaking Bluetooth. and the phone is speaking Bluetooth and your CGM is speaking Bluetooth you don't need a translator anymore. And so the phone will be able to directly communicate with both devices. And so tide pool loops development is focused on insulin pumps that have an eye pump designation and Bluetooth capabilities built in.

Scott Benner 25:24
And can I ask tight poke at a question real quick? On the pods all for this right? Like I've spoken to them, they're super excited to have a relationship with tide pool.

Katie DiSimone 25:34
They are incredibly supportive. And kudos to them for recognizing a community need and stepping up and partnering with tide pool to do that I I am as a parent of a team Wendy actively involved in the DIY community incredibly heartened by the commitment they've made with title to bring that forward. Yeah,

Scott Benner 25:58
because at some point so that people understand, you know, let's say that we don't I obviously Katie's not gonna tell me timelines, and because you need to be able to hit timelines and their company and all that stuff. But let's just make up a day and say that a year from now, tide pools going to have this setup. So you don't need your grouper. And it's just going to talk to the Bluetooth pods right? On the pod might not be ready with their horizon system by then. But you can use you'll be able to use basically tide pools algorithm with loop to do that. If one day or when one day, excuse me on the pod comes out with their horizon, you get to decide you get to use their algorithm, then try the loop algorithm and say, well, listen, I this one works better for me, I'm gonna use this one on the pod completely okay with that, for those of you who are who are newly diagnosed, and have not been around diabetes for a decade, or more, like like I have, that's unheard of, for a company to just be like, hey, you know what, if this works better from you, and it's not from us, we don't care. Just we want you to be happy. That's insane. Like no one says that. Everybody always wants you to tie down and locked into their thing. But this is the beginning of a whole new world. Super exciting, you should be genuinely jacked up that Omnipod Zed on this, because this is just, I think the beginning of a lot of good stuff.

Katie DiSimone 27:16
It's a monumental shift. And it really can't be oversold or overstated. How big of a shift this is towards understanding the needs of the community. And saying, I believe that the marketplace can

Scott Benner 27:34
absorb this decide for themselves too.

Katie DiSimone 27:37
Exactly. And there's so many people that aren't on pumps. And I think there is a huge portion of people that aren't on pumps, not just for access issues, but also for choice issues is that there's not a product that offers them a lot of choice, you're locked into one. And for Omnipod to say hey, listen, we support our product, we support this new tide pool, whatever the system is, like you say there into the interoperability and you can choose and it's amazing, it really, it's it's visionary, and I'm completely supportive of that kind of vision. I think tide pool has that vision to putting on a little bit of a toot their horn here, but really a nonprofit coming in and saying we're gonna take on this, this huge task, it really is a lot of work. If it's amazing, and we have JDRF support for tide pool and Helmsley Family Trust is sponsoring a job observational study for loop users in the US, that's going to provide a lot of insight into how the system's working for people. So I really look forward to kind of getting this project down the road and showing what it can do for a lot more people who perhaps like you mentioned at the start, look at building an app on their phone and say, That's just not for me. Yeah.

Scott Benner 29:03
Okay, so we're gonna get to the building part in a little bit. But I wanna understand the using part. First, I want to talk about the fun part before I talk about the heart. Okay, so, Katie, you don't know me. But when my daughter gets a plate of food, I look at it. I think that's 12 units. And I'm gonna break it down into an extended Bolus. I'm gonna do 30%. Now do the rest over half an hour, we're going to do a Temp Basal increase of 75% for an hour and a half. And that's that. And then if I'm right, great, and if I'm wrong, I adjust. I don't count carbs. I don't know my daughter's insulin to carb ratio. I don't actually believe she has one. I don't believe any of us have one. I don't think there's a static insulin to carb ratio. And I don't think there's a static Basal rate. I think all of that some old timey BS way before this stuff was available to us before this technology. I think that was just the best people could do. And so how different is it going to be for me now? When that plate of food comes out, do I still get to guess at how much insulin is? Or do I now have to count the carbs? Or what's the real? Like how does it work in a real life situation plate comes out. What do I do? Are you looking for delicious low carb snacks and meals? Well, if you are, look no further than real good foods. You ready? You want to hear it. They have newest offerings, breakfast sandwiches that come and sausage and bacon of course they have the chicken crust pizzas, and personal supreme personal pepperoni and personal three cheese. Cauliflower Crust Pizza lovers. Do not miss the vegetable pizza, pepperoni pizza margherita pizza and cheese pizza. All of these come in delightful variety packs as well as one at a time. Have you had an enchilada for lunch lately? How about a pork enchilada chicken enchilada beef cheese, or go crazy and get the mixed case. Real good foods also has real good poppers bacon and cheddar, jalapeno, white cheddar, artichoke and cheese and pepperoni and mozzarella. Maybe you want the chicken crust pizza, but you don't want the personal size, go to the seven inch, again, cheese, supreme and pepperoni. And if you go to their website, they got a pro tips area. Now it's not like our diabetes pro tips. These are pro tips about how to cook the real good foods to perfection. Because real good foods want you to have a real good experience. Now what could make your experience better, better than having what I've just described you sent right to your home is having it sent to your home and paying 20% Less, you'll see other coupon codes out there for real good foods for 10%. But please, I told you a good foods for the Juicebox Podcast listeners 20%. I demand that and so it will happen real good foods.com use the offer code juice box, you can also find a link to real good foods in the show notes of your podcast player and at juicebox podcast.com.

Katie DiSimone 32:01
Yeah, so for you, it will be an adjustment because conceptually, the same statements that you just made all still apply. The difference is, instead of knowing your insulin dosing, you're going to be refocusing on carb entries, because you will have to use a carb ratio still, the whole premise of loop is that it makes a prediction of your blood sugar over the next six hours, and it says this is due to these factors. And one of those factors is your carb entry that you put into it, you say I'm going to eat 12 grams, this is what based on my carb ratio and my insulin sensitivity and how much I have on board, this is where it's gonna go. So the carb ratio is still an important part of making that prediction line. That said, it's, it's not an insurmountable shift, because I actually was much like you prior to going into looping is that I knew these things needed to extend a Basal and these things needed. Or extendable as, excuse me, or maybe these ones get an extra hit of insulin in two hours. Those kinds of things all translate and instead now instead of saying I need two units here, you get a carb ratio, and you say, Okay, if that previous thing needed two units, and my carb ratio is one to 10, you just do it now as a carb entry instead of an insulin entry. So well, it will be a shift,

Scott Benner 33:38
okay. And on the image I'm looking at right here, there's like pictures of like, I see a taco, I see pizza and I see candy, do I tell it 15 grams, and it's this kind of food?

Katie DiSimone 33:47
Yeah, see, that's the really cool part loop is the only system that does this. So for people who know after, after you eat a pizza for the first time, you know, if you gave everything that you need all upfront, you'd be low, and you'd be incredibly high later. So what loop dies, it's got this really amazing ability to extend your carb absorption and say this foods going to be a really long, slow burner, I'm going to be fighting the impact of this meal for six hours, or four hours, you can tell it that and the way that as you described, you know your meals, you know that this meal impacts your daughter this way. And it might not be the same for everybody. But everybody kind of has a sense of this particular plate of food kind of does this. And you can tell loop that ahead of time and it will watch for you. So for pizza, for example, let's say you have 100 grams of pizza, and you know that you need about 60 grams worth of that bullet up front. And maybe 40 grams of that later. And you think a bit in terms of your Temp Basal is that you send stuff but you could say I need about two thirds of that upfront and maybe a third of that whole Will insulin amount later loop actually has that built in, when you tell it your food is going to take a long time to absorb, it knows that if it throws all of the insulin on board early, you're gonna go low early. So it will withhold some of that Basal some of that Bolus recommendation, because it's going to keep you from going low early. And by withholding it early. It also knows that you're going to need some later and it will automatically add that as high Temp Basal as soon as your danger of going low, has passed. So it basically functions as an extended Bolus for you when you push that pizza button. Yeah, so

Scott Benner 35:42
I have to tell you that I had I'm so bad with names. But like two years ago, I had that that woman on the girl who like made her own AP, like, you're gonna know who exactly what she has? Yes, Dana, I had Dana on. And I had Dana's husband on, they did him in two different episodes. I don't know why I did that back then. But I thought it was interesting. And what I took away from those episodes where I just asked, that still is like a silly question. I was like, So how often does it Bolus she was really most of it's handled by Basal rates. And I thought to myself, like, it was like, somebody clocked me in the head and the light went off. And I was like, That makes so much sense. And that's it, that conversation helped me, you know, supercharge what I was already doing. I was like, oh, okay, I'm going to use more basil. As I look at this, my next question is, does it learn? Does it learn?

Katie DiSimone 36:34
Yes, and no, it doesn't learn long term. So for example, it's not looking at your last day or week and say, Oh, you look like you're running a little sensitive. It doesn't do that. But it does do some near term looks at how it itself has been doing. It looks as its own predictions. So basically, it looks over the last hour. And it says How close was I and if it thinks that it was really far off, it will wait the next 30 minutes of data and say I've been off a little bit, I'm going to help you out a little bit more, because something's going on in the near term. And we'll fix that. So in the short term, yes, it looks at its data, but it's very short term, in the long term. So there's this one thing you're talking about, like learning systems within loop, there's a really incredible line within loop. That's called insulin counter ACTION EFFECTS. It's a big name. But basically, what it means is that loop has a screen that you can tap on. And at the end of the meal, it will say you told me this was a 50 gram meal, actually, based on your blood sugar response and how it handled it, it actually hit you more like 63 grams. And so you can actually learn a lot from loop. When you look at your food at the end of the meal, you can go, wow, you know what? I see what it's saying, based on my blood sugars, that meal treated me as if I was 80. So you know, nutritional labels aren't right. And sometimes you're at a restaurant and you're like, I'm still trying to learn this meal. How, how much do I give up front? How do I, how do I Bolus this meal loop will provide that imp that impactful statement towards you, or for you at the end of the meal and say, Hey, that meal treated you like this. So the next time you go back to have that meal, you'll be better informed.

Scott Benner 38:25
So this is like a blown up idea behind all carbs aren't created equal. And yeah, and it's an extension of what I told you where I say I stay flexible, I put the insulin in and I see what happens. And then I stay flexible. So in for your knowledge. If I were to do a you know, do the regular Pre-Bolus that we do you know as far as time goes, and Arden starts eating and 30 minutes later, I see a diagonal up arrow, I do what I call stop the arrow, I stop the arrow from from going up, I use little bits of insulin to make a stop. And then the next time I would say to myself and I preach it to people all the time. You look at a meal and you think oh that's five units. And then you later use a half a unit to correct it. Well then next time don't look at the same meal and go that's five units say to yourself, that's five and a half units.

Katie DiSimone 39:14
You can't see me I have my hands in the air gone. Yes, yes. Yes, exactly. is dynamic thinking is probably the biggest tool you have in your tool belt for a successful

Scott Benner 39:26
career. I wish I knew what a moron I was that anything in life has struck me well is is absolutely a miracle but that I figured this out, you have no idea that it was me. Doesn't make any sense. Like this is not something I should have figured out. And I don't know how I think I A lot of times give a lot of credit to writing on my blog for so long and wanting to help people and seeing that I had to find out what worked for me. And then I would wait months I would never share anything right away. I'd like let me make sure this is really valuable before I tell somebody about Got it. And then I would tell them about it. And I kept building. And before I knew what I realized I had like these, like 10 basic tenants of how to keep a blood sugar stable. And I was like, wow, this is like a system. Like, it's a way. Like if I put it all together, it makes sense, you know? And still, I swear, I really wish you knew me because that I figured anything out is just hilarious.

Katie DiSimone 40:20
No, it is it is absolutely huge to have a dynamic attitude. If, if I always put it as respond to the information you're seeing, not the information you thought. And so if you're seeing that a meal is actually cheating you like 10 grams more than what you thought you had to give more, take that into account the next time

Scott Benner 40:42
and if the people who are listening aren't thinking right now, trust what you know is going to happen is going to happen, then you have not been listening closely enough. Okay. So you have to trust that what you know is gonna happen, it's gonna happen, you can't get high every morning at 8am. And every morning at 745 think, Oh, well, I hope it doesn't happen today. It's gonna happen. Give yourself insulin now. Right? Like so? Oh, I'm not see. All right, okay, let's calm down. Because I think we're coming up to the point where I'm gonna get upset and sad. So I see how it works, I see that my daughter will be able to, you know, count carbs and do things like that. I also, by the way, believe, holy that people eat mostly the same thing over and over again. So it's not like you're counting carbs forever, or trying to figure out how much insulin a meal is forever. Usually, you eat about the same 20 or 30 or 40 things, eventually you'll figure out figure them out. Dex, calm, you want a Dexcom, you might not know you want it or maybe you do know you want it one way or the other. You'll want it dexcom.com forward slash juicebox. Here's what you're going to get when you have a Dexcom, a G six continuous glucose monitor, you are going to get information. And as they say information is what do they say about information? There's a saying about homozygote? I know there's a saying about information. I got a right here. There's 486 sayings about information. It's not helpful. No, that's not it. Hmm. That's kind of deep from Albert Einstein, but not the one I was thinking of. Not that one. God, turn DNA is like a compute now. Or maybe there's not a saying about information? Well, I'll tell you what, I'll make one up right now, when you get the information back from your Dexcom, you make better decisions about your insulin. That's all. There's nothing else to say that information can come to you with a Dexcom. And a couple of ways. One way, share and follow available for iPhone and Android. You know, that means share and follow. Like there's an app share, and there's a app, you know, share app follow up. One of you probably like the person you love, who has diabetes has to share up and then another one of you, like a person who cares enough to pay attention to their diabetes has the follow up. And then there you go there diabetes does something that goes up because the ad is trending in one way is trending in the other. It's moving, it's dancing. As you can tell, I'm making this episode late at night. And I'm completely dopey. So just by a Dexcom dexcom.com, forward slash juice box links in your show notes in a juicebox podcast.com. You will not regret making the jump to continuous glucose monitoring with Dexcom. So here I am. I'm Scott, I'm standing in front of my microphone. And I have ordered my Reilly link, which is on backorder. And by the way, if you know anybody who can help me with that, Katie, I would appreciate if you put in a good word. It's going to come to me, my goober is going to show up in the mail. And there's other things I could probably be doing before it gets here. Is that true?

Katie DiSimone 43:48
Yes, you can do everything before it gets here. Except actually, you can build the app, you can get other things set up. If you're ready for it. If you're a Nightscout user, you could get your Nightscout set up you can you can do everything you can except for turn on the right link and

Scott Benner 44:09
Okay, and this is not going to get in the way, by the way of my Dexcom share, that's still gonna work fine. Everybody's gonna be able to see that stuff.

Katie DiSimone 44:17
Totally. It's still you can still actually use your exact same Dexcom app, your Dexcom alarms are all still the same. Basically what Luke does is it eavesdrops on your dex comms communications, and so it doesn't interfere with your Dexcom.

Scott Benner 44:31
Okay. All right. So, if you were me, what would you do first?

Katie DiSimone 44:38
If I were you, what I would do first is kind of conceptualize what your game plan is. Number one is, get your computer up to date and also kind of let me take one step back on my Instagram account. I do have a loop advent calendar that I did just kind of on this topic, as I was trying I need to prepare the community with this is coming. And here's a really small digestible day by day. Advent Calendar of day one, make sure your computer is up to date. Do you have Mojave macOS? I'm kind of explaining what starts to sound like technical stuff, just pay make sure your computer is up to date. And it has my Mac, is that right? It does have to be a Mac, yes, it has to be a Mac running what they call Mojave operating system, which is their latest one.

Scott Benner 45:30
Oh, I see your Instagram account. Look at you. You're delightful. Look at this. Very nice.

Katie DiSimone 45:36
So yeah, so you can run through each of those admins day by day and just sort of take it in tiny digestible chunks. And do each of those. Basically, you prep your computer and and this is the part that looks intimidating on the website. But it's actually not is that each of these are natural stopping points as I've tried to lay out the pages in the building the app section into natural stopping points. And so you prep your computer, basically, you want to make sure your OS is up to date your operating system and that you download a free app from your app store that comes from Apple is called Xcode. And basically what Xcode is, is like you present that code for the application for the loop application. And it compiles it all and builds it into a nice little package, you plug your phone into your computer, and Xcode puts that app onto your phone. So you're literally downloading the loop code from us online. And you're using a free app on your computer. You press like four buttons, and the whole thing builds by itself. That's how easy it is

Scott Benner 46:43
fancy as now, yeah, I have already while Katie was saying that, even though I swear to you, I didn't know she was gonna say it. I've already downloaded Xcode onto my computer. Yes,

Katie DiSimone 46:58
that's step one. If you get that on, it's actually a pretty big download. And believe it or not, that's the longest part of building a loop app is downloading. Okay, and then I have a cup of coffee, and you're good.

Scott Benner 47:10
Okay. And I need a developer. I have to be like an Apple developer. Right? Yeah. Because Because for everyone listening, I am technically making my own iPhone app right now. And they're gonna give you obviously all, you know, Luke gives you all of the instructions and the you know, and the code and everything you need for it. But you have to do that because it remains your responsibility. And yes, right. And in the future, if I want everything, you know, work in the way we want it to work, but tide pool and everybody's got their Ok's and their FDA clearances and everything like that, I will just download this app from the App Store I'm assuming or downloaded from tide pool.org or something like that. And it's gonna go right on my phone, I'm not going to need to be a developer or have Xcode or anything like that. Is that right?

Katie DiSimone 47:52
Correct. The tide pools project is basically taking the fundamentals of the DIY loop system, and taking that through FDA approval. So the study is going to help solidify what needs to be done to make that app able to be distributed as a medical device under FDA approval through the App Store. So yeah, that's where the that's where the two projects between DIY and type lube start to diverge is that concept of being able to download this on your app store on your iPhone, and what needs to be done to make sure that all the FDA clearances are done.

Scott Benner 48:32
So yeah. So so tight pull Katie, eventually, this is just going to be checkboxes and drop down boxes on an app.

Katie DiSimone 48:41
Yeah, what we envision is that you'll as type hello, Katie, I'll speak now is that you get to go to your endocrinologist, talk to them about your settings and your carb ratios and make sure that you have some reasonable settings, they prescribe a type of loop for you. You have your components, and you get to go to the App Store with your prescription number and download it.

Scott Benner 49:05
Okay. All right. Let me think. I'm thinking that it's coming in my head, I'm figuring it out. So it's going to look, it's going to look like a lot but Katie has as a person who's done this, not knowing what she was doing and getting what would probably be the best expert advice that she could as she was going along, has turned it into the simplest steps you could possibly have now. I'm going to do this and I'm going to whatever my Reilly link comes, I'm going to I'm going to be ready. I'm going to be set up and I'm going to go and I'm going to try it and see what happens. What is my expectation for a person who lives between 70 and 128? Like, in my mind, I think my first excitement is going to be sleeping soundly overnight. Is that is that the simplest win that I get from Luke, do you

Katie DiSimone 50:01
Yes, for sure sleeping through the night is unbelievable. I think I didn't know what I had started missing until I started sleeping again. Good example last night, my daughter was out to the movies with their friends and needed a ride home at 130. In the morning, it was a drive in double feature far away. And so I was up until 130. In the morning, I can't even tell you how tired I was. Because I've gotten used to getting a full night of sleep all the time. Now, it really was daunting to have to go back to the olden days of missing hours of sleep.

Scott Benner 50:37
You're making people cry right now you don't realize that but there's like 1000s and 1000s of people listening and they're like weeping in their cars. And while they're working out at the grocery store and stuff like that. So that's, yeah,

Katie DiSimone 50:47
I'm a I'm a different person. When I sleep. I'm a nicer parent, I'm a better spouse. There's like a lot that goes with sleep. Yeah.

Scott Benner 50:54
There's plenty of conversations in this podcast where I tell a story about I was so exhausted at one point, and I didn't know it. And then I went away for a week without my daughter. And about the third or fourth day into the trip. I thought to myself, Oh, my God, this is me. Like I remember having thoughts like this. Yeah. You know, like, and being clear headed and that sort of thing. So that's my, that's my excitement. Can I ask you something? Yeah, say I decide I like loop for sleeping. But I want to just stick with what I do for eating, can I do that

Katie DiSimone 51:26
100% You can turn loop has one slider, it's super simple. It's called I opened or closed loop. If you open your loop loop will let you just get the recommendations but not automatically put them in. So it will use your scheduled basil just like your normal pump therapy would, it would just give you your basil that you have programmed in. And you can choose to deliver the insulin any way that you want to, you can enter the carbs, and you can choose your particular Bolus sport. So let's say during the day, you want to say, You know what, I still am working out my carb ratios, I'm still figuring them out. I just kind of want to do it one meal on a convenient Saturday and see how my settings are. But in the meantime, during the week, while she's at school, I just want to keep to our old paradigm until we can get to, for example, right now I'm thinking summer, you know, summer, I'll be home, this will be easier. Absolutely. You can go to school, keep it an open loop, they can enter their carbs, provide whatever Bolus number they want, and loop won't be taking any extra action. And then when you come home at night, you can go ahead before you go to sleep at night, you can turn on the Closed loop switch, you just toggle it right over. And it'll be looping overnight.

Scott Benner 52:43
So being an open loop would show me what the algorithm is thinking because it would say to me, Hey, right here, if I was you, I do a Temp Basal increase of

Katie DiSimone 52:52
absolutely, oh, every five, every five minutes across the top, you'll see the recommendation update. And I'll say this is the new Basal rate I think you should set so you'll be able to see if it's greater than or less than where your existing settings are. And you'll see the prediction too, as well. You'll see the prediction go up and down. I think that's one of the first things that kind of freaks people out as they see that prediction. They're like, Oh, do I cheat a low now because it's chosen six hours, I'm going to be low. That prediction line is always as if no other actions are taken. And that's the whole thing is that loop is going to take actions to prevent or change what is in the future. So if you see a low coming in six hours, you don't need to treat it right now. loops going to be cheating it for the next six hours and staving that off.

Scott Benner 53:43
And so that never happens. It's just like a time travel movie. In a time travel movie, sometimes they show you what's going to happen in the future. But then the people in the past make better decisions in the future never happens.

Katie DiSimone 53:56
Yes, that's exactly what loop is doing for you. Is it saying? Oh, wow.

Scott Benner 54:00
And Katie, by the way, now you know why the podcast is popular because I can take incredibly complex things and turn them into moron talk that everybody can understand.

Katie DiSimone 54:10
I have tried to do that with loot building instruction. So I think you're I think you're my kind of people

Scott Benner 54:15
like seven year old in my mind. So okay, so I also just realized I might be more people are gonna laugh because I don't think I knew this about myself. I think I'm more of a diabetes geek than I thought I was. Because when you said you could open the loop, and then see what it was thinking. That to me takes me back to back before CGM when I used to test on it all these wacko times that my endo would be like, Why did you test 45 minutes after she ate and I was like, Don't you want to know what's happening? And she was like, No, and I was like, No, I think we should know. You know, like, I'm gonna keep testing. She'd always be like, I don't understand how you're a one sees her like this. But you're showing me all these weird blood sugars that don't make sense. I'm like, because I'm tracking what her blood sugar is doing so I can make better decisions. I really think I really think that with six months with loop, I might have to have my head made larger, not for my ego, that one person that left the review, but for my knowledge of diabetes, because I really think this is going to just kick it into another stratosphere.

Katie DiSimone 55:14
It really, it's a truth serum, it really tells you a lot about your settings, your understanding how you conceptualize, reacting to things. For example, a lot of people as they're getting used to this are impatient with insulin, they'll say, I don't want to wait it out. And they'll rage Bolus or or they think the rage Bolus, and they're actually not even bold enough with insulin, you know, and they say, Oh, I'm so scared of going out, having the feedback from a loop constantly telling you, hey, here's what I would do. And here's oh, by the way, your meal absorbed 20 grams more than you initially told me it would be and lasted, it also tells you the time and took two hours longer to digest than you expected. That kind of information is so powerful to relieving the diabetes burden, because it's fine tuning your expectations. And when you change your expectations for going into it and say, Yeah, you know what, it's okay that this meal choose me as 65 I feel comfortable, something has helped me learn better.

Scott Benner 56:21
Okay, I'm so proud right now. And I don't know if you did that on purpose. Or if that was by mistake. Either way, I'm proud. You said bold with insulin, which is really the whole tagline for this podcast. It's that's my hashtag. It came from here, if you don't know that, I'm just thrilled that those words are somehow in your brain, which means it's getting out in the to the stratosphere. And if you did know that, I appreciate you listening.

Katie DiSimone 56:45
Well, I actually heard that from a podcast interview you had with T one Junebug because she's a good friend of mine for several years. And I saw her use that phrase and I thought yes, that rings true. People are scared to dynamically think they'll see the same blood sugar rise, the same blood sugar rise, the same blood sugar rise, and yet say but the label told me it should be 10 grams or my endo told me it should be this and, and stringing that along. And and being a more dynamic thinker. And being bold with the insulin taking the insulin you need for what you've seen over and over again, is really good dynamic thinking.

Scott Benner 57:29
Yeah, I appreciate that. I was just speaking with a mom last night. And I said to her, you have to I said, I know that. You know, I haven't given you any advice here because I don't give advice. I just pass on my own stories. But I told her I was like, I can give you this one piece of advice. I said, I would stop thinking about all the things that people have told you to do, and told you not to do and just apply a little more common sense to this. You know, like, like, stop overthinking it, your blood sugar's high, you need more insulin. That's kind of just I'm down to like, if I see something online, people are like, look at this graph, and I go and I type more insulin. And then I hit Enter, because I can't I can't explain it any more. We do it here enough. But sometimes I'm just like, how can you look at a 300 blood sugar and think I don't understand what's wrong, I know what to do. Of course, you go, what's wrong, you didn't use enough insulin. And so

Katie DiSimone 58:21
it's not going to be it's not going to be the same and it's not going to be perfect. My daughter gets nervous around certain situations and her blood sugar spikes. And Luke doesn't know that's coming. Nobody gave it an announced warning. Nobody gave me an announced warning or my daughter. And so there's ways that you can help correct that faster as well. You can still override and give more insulin and give a correction. There's a lot of information built into loop to help you with that decision making process if you choose to take that interactive Step. If you're the type of person that just says you know what? I'm happy. I'm happy with a little wider range. And I just want less cognitive burden of interacting with it today and or longterm. You can let Luke do that as well. It has all the information put in there that it will meet you at your comfort level and help you make the most of where you are. I'm gonna say

Scott Benner 59:17
something real quick. And then I'm gonna ask you a question. What I'm going to say first is for everybody listening who has come to count on the podcast, I just want you to know that even if I do this and stay with it, I think it's only going to enhance my ability to talk to those of you who aren't doing this. So don't worry about that. I think I want to ask, are you comfortable telling me what your daughter's a one C is on loop?

Katie DiSimone 59:38
Oh, yeah, totally. She started loop at 449 I think and again, we were low carb heavily intensively, lots of work, lots of communications, lots of texting, lots of less sleep. So we are working hard. She is now Got a five, six? What was her last 156? I think, and she is as high carb as they come has become a vegetarian. So we have no, no like low carb meals ever. And she is completely independently operating and bolusing and doing everything through loop. I have not told her how to split a Bolus in, I'm gonna say a year. She is completely handling all of that just by loop recommendations and putting it into loop. I hope I don't tear up, it has changed everything. I now have the space reclaimed for what used to be diabetes conversations I now hear about her friends at school, I hear about the things she wants to do I hear about going to the beach, and can I go on a date? And I hear the things that I'm supposed to be hearing and they're not laced with? Don't forget to bring diabetes into this conversation. I don't have to do that.

Scott Benner 1:01:04
Don't forget, did you I start too many sentences with Did you? Or you know, can you tell me or what does the say? There's, there's still listen, I'm gonna be honest with you. We don't talk about diabetes around here very much. Because we really are, we just have a rhythm. Like I don't know another way to put it. But at the same time, it still happens. And if it could be less, that'd be amazing. And if it's less for me than I imagined, it's going to be much less for a lot of other people. I have to say that this is this is the future that I always imagined, I always thought it was going to come more in like 2020 like writing that was my kind of estimation. And I was always happy with that because I thought well, that's still a couple of years before are no go away to college. So I'm okay with that. But just the idea that it could happen sooner.

Katie DiSimone 1:01:57
It's got me It's amazing. I'll give you an example. When my daughter goes to summer camp, we always talk well, do you bring lip? Do you not bring loop? And, you know, I realized that sending her to camp with a non FDA device puts a little bit of burden, an ask on those camp staffers. And, you know, so I'm cognizant of maybe we don't loop when we go to camp and certain camps even don't allow it. But our particular camp is supportive. And but it's always, it's always funny, she goes to camp because she doesn't want to feel different, right? She's got her her crew, her tribe. And she doesn't feel different around them. But she does feel different. She's perceives this if we talk about it in April, or may have going to camp using loop because she's worried none of her other friends will be using the loop. And so we have this conversation every summer for the last two summers about whether or not she's going to live there. And every summer, she goes into it telling me, Well, I'll probably take it off while I'm there. I'm taking it now. But I'll probably turn it off because I don't want to be different. And she never turns it off. And she comes back to the pickup station after two weeks away. And all of her friends are around her and I'm telling you it's like a little gaggle, there'll be five teenagers with her that I'll go. Katie, can you get us on loop too? You want to use it too? And so, you know, I kind of take that, as my bellwether of how good the system is, or isn't is if adults weren't involved and parents weren't involved, what would the kid decide to do? Because I think that's a really important aspect is the informed decision making process involving the kid and letting the kid be a part of that? And so when she comes back from camp, and there's five kids with are saying, Can you help us? We want to do that, too. I think it's a good sign that the system is well designed and helpful, as opposed to an extra burden that just isn't useful.

Scott Benner 1:03:52
That makes a lot of sense. Can I pick your brain about something else as a as Yeah, as a person who's obviously given a lot of their time and effort to the diabetes community? I think that overall that shows the your concern for people who you know, who have type one and people who you don't know who have type one, I feel similarly. I don't ever have this feel fear. But I know some people do that if you take away the idea of how to manage diabetes, that if the technology is not available, you'll be lost. And I don't talk about that here. Because I think it's silly to make somebody struggle and cry and be upset and exhausted just so they can understand how a Bolus works. I don't think you need to do that. I have dedicated this podcast to fast forwarding people through that whole process. But I'm now I'm projecting into the future. Right. I talking privately and have been for weeks and months with a mom of a little girl who is so newly diagnosed that she is honeymooning to the point where she doesn't need insulin some days. And it's really going on for a long time. And I'm imagining her right now. And I'm thinking I could put this on her. And she would never know all of the tragedy that I've lived through, and that so many other people have lived through, like figuring out diabetes. And is that a good thing? Obviously, it is. It seems like it is at the onset. But what would happen if that technology like if her insurance changed or something happened, it was just taken from her? Do you think that she'd be gobsmacked blindsided by what diabetes really is without the technology? Have you ever thought about that? Like, I'm just interested in your in your like off the top of your head thoughts?

Katie DiSimone 1:05:39
Oh, yeah, I think I think people would be if it disappeared from us. For us. Would it be impactful? Would we notice it absolutely. Give you an example. We switched to Omni pods because we were having problems with sites on NEOs and Medtronic. So one day during a particularly painful yet again, cannula failure kink kind of issue day. She had to turn off loop, we were just perfect storm CGM fails. Me Oh, failed, we were flying blind. And she had to give herself a shot for the first time in two and a half years almost. And I was away from home, she was home alone. And I said, Can you do it? And she's like, Yeah, yeah, I think so. And she did. And it was daunting, and all of that. But that said, you do what you got to do. And I don't believe in keeping the covers on the couches, and not using the things that are great in life, just because something might fail later.

Scott Benner 1:06:54
I don't, I don't like it when there's fear mongering around advancement. And and I think it happens a lot. I think when Dexcom first came out, there were people running around going, you're not going to understand your diabetes. And I think there are people that tell people, you have to have a do shots for a year before we give you a pump. I think all of that, and I'll bleep this out later. I think all of that is okay, I think that you need to understand how insulin works in your body, and then you're good. And it seems to me that this algorithm is going to understand how insulin works in my body. Now should I still understand it? I should but I but what I'm foreseeing in the future is, is that you're going to go on this and write on the screen, you're going to see what's happening. And you will learn how insulin works in your body without ever having to fumble around with the algorithm is not just going to keep your blood sugar where it wants to be where it wants it to be. It's going to teach you how it's doing it visually. Yeah, that's what I'm seeing here. So now you'd have to translate that back to a pump without a loop or injections, if you got stuck in that situation, but you wouldn't be starting from zero, you'd actually have a fairly fast forwarded understanding of it, you're gonna put this podcast out of typo, you're gonna need to hire me if I can't get downloads on this podcast anymore. Because your loop seriously a fluke puts my podcast out of business, Katie, I'm gonna be pissed.

Katie DiSimone 1:08:16
I tell you what, it really died. That's like a truth serum are the assumptions that people had about their diabetes understanding is

Scott Benner 1:08:24
wrong, guys. You're always wrong. Everybody, I'm sorry to cut you off. Everybody who sends me an email is like, I think this is what's happening. I'm like, No, that's not what's happening. Your Basil is wrong. You know, like, like, no one ever really knows. Because it's, it's, it's, it's this false idea. And there I had somebody on recently who said this thing that just struck me. He said, You know, if you put a pencil in your back pocket, and you rob a bank, pencils don't cause bank robbery. But But somebody thinks it does. somebody sees this cause and effect, and they just say, I saw this, then this happened. So that thing must have been the reason why and we make that mistake so often. And diabetes, it's not funny.

Katie DiSimone 1:09:00
It really it's such a true serum is that people get on when things are automated. That means it's using the same assumptions you put into it. And when those assumptions show, hey, you're trending high, or you're trending low, consistently, people are like, what, but these numbers were set in stone, i These were fine. I was doing fine. And what they don't realize is No, you weren't doing fine. You were you were taking a lot of manual actions to make it fine. Or you were adjusting in other ways that you hadn't realized. And so when it to two wrongs can make a right and diabetes, you can overlook things very easily by having two wrongs equaling a right. Yes,

Scott Benner 1:09:48
there are so many times that people are having a good outcome at 3pm. That's really just from mistake at noon and they have no idea. Yeah, it's really it really is. Once you see it It's I joke about that it's a little old of a reference. But once you see it, it's it's like at the end of the matrix when the bullets start moving for Neo, and he's just kind of like walking in between them and moving away like once you can see it, it's fascinating

Katie DiSimone 1:10:12
loop provides that visual, that visual interface to be able to see it. So one good example. So for example, let's take your correction factor or your insulin sensitivity. A lot of people have a wild guess at that, but they don't really know and they haven't tested it. When you see your blood sugar's on an automated system, kind of roller coastering, up, and then down and up, and then down, you're also probably gonna see what I called lightning bolts of Temp Basal. So you'll get a lot of Temp Basal action trying to correct a rising blood sugar and then suddenly, you'll turn low, and or not low, but you'll start heading down and then you'll come back up, and you kind of get on this oscillation of roller coaster. That's usually because your ISF is, needs to be higher number. So I don't know I'm avoiding using the word weak or strong because people have different impressions of what that word means in terms of where the actual number needs to go. But if you had put in, if you told loop, each unit of insulin will drop my blood sugar 50 points. And you start seeing that roller coaster pattern, that's a really good indication that your your value of 50 actually might need to be up near 70, or a different number higher than 50. Because you basically undersold insulin to loop, it's actually doing more than it expected. And so some of these things about loops, ability to inform you of your diabetes assumptions are really like strikingly obvious. As soon as you start using it, as you start seeing that you go Holy smokes.

Scott Benner 1:11:52
Okay, so I have a couple of just like, like fast paced questions here. So first day of a Dexcom sensor in the first few hours, I don't really lean on it for like, you know, I don't want to put a time on it. But until it's right, like until it's soaked in, it's really working. So do I just go into open loop during that time? Is that what yeah,

Katie DiSimone 1:12:10
you could? No, it's not what I do. But you could, my daughter basically usually ends up changing her sensor at night, which is, I think, the worst time to change a G six. And so the whole first night, we basically get a lot of false lows or compression lows. And what we have found is that basically, loop still does, okay, it doesn't. And in essence, what happens is that you get some higher Basal rates, you get some suspensions, and they all evened out over the course of the night to be okay.

Scott Benner 1:12:44
hammers out the kinks and gets it gets you Yes,

Katie DiSimone 1:12:47
yeah. And then when she wakes up in the morning, finally, the Dexcom is back on an even path, and everything's fine. So for the first 12, for us, it's you know, it will depend on the person, but for us, the first six hours of a new sensor are kind of jaggedy. If it's really far off, we can go into open loop mode, and it's no problem.

Scott Benner 1:13:09
Okay, what about different insolence? Do people see different or does it not like we use a pager? That's gonna be good?

Katie DiSimone 1:13:15
You send me up on that one. Yeah, actually, within loop, we have three different insulin models. So there's four, but three are based on the type of insulin and the user. So there's a rapid acting adult, which is like Novolog Humalog. For adults, there's one setting for children. And then there's another setting for fiasco. So and then each of those settings basically describe how the insulin curve works. If you after knowing your daughter and kind of looking at how things work, say, wow. On our particular insulin, we think it peaks at this amount of minutes, that's actually something you can customize within your loop to say it peaks at this time, we have numbers put in there that are based on the published data of how these things behave and clinical trials and all of the published data. But if you find that for you, your diabetes is different, you can actually tweak and customize some of those things.

Scott Benner 1:14:19
Okay, and so a lot of it's customized Like for instance, can I pick her target blood sugar?

Katie DiSimone 1:14:24
Oh 100% Awesome. That's

Scott Benner 1:14:26
the one thing I would just not like I don't I would I want to sleep more but not at the you know what I mean, not not to say that I don't know what the Medtronic artificial pancreas but it's like at 120 or 140 or something like a target up there. Like I couldn't do that. I wouldn't be able to make that decision.

Katie DiSimone 1:14:43
I'd say out of all of the feedback I consistently hear on the development of closed loop in the commercial market. That target setpoint is is the real critical piece for a lot of people. And on this one, you can set it anywhere you want. We have people setting At that are ultra low carburetors and have a single number target that they really aim for. And there's other people that are doing a much wider range and are. So yeah, it's totally up to you what you want to set it up.

Scott Benner 1:15:12
Okay, is it my so my last kind of nuts and bolts question is do I tell it when a new pumps going on? Like, how much does it care about how old the infusion set is?

Katie DiSimone 1:15:20
If you're on Omni pod, it keeps the theme, Standard Change cycle as Omni pod, it will alert you it's well at 72 hours. Omnipod tells you just pods done but at 80 hours, it really makes you change it and it says you're done done. Loop has the same things. And you can set a custom notification for when you want it to tell you hey, it's coming up.

Scott Benner 1:15:42
What about this? Here's another I said I wasn't gonna ask any more nuts and bolts questions. I have one more. What if a cannula like comes out a little bit? I'm getting some of my insulin but not all of my insulin? Does it know that? What's that? It's not seeing what it thinks it should be saying?

Katie DiSimone 1:15:57
That's a great question. And the answer is no, in a way is that basically, if it thinks you delivered a whole unit, but the cannula actually only managed to get half of that under your skin and absorbed, loops calculations will be a little off, it will think that you have more insulin than you do. And so what you can do is there's a couple of different options, you can open your loop, until that discrepancy wears off, and you get it all changed and figured out, you can open loop and just go back to normal pump therapy. Or you can enter in a fake carb, where you say, Hey, I'm going to eat five grams Bolus mean for these five grams. And basically you're tricking the algorithm to think your blood sugar will rise because you were eating. And so therefore, it will offset some of that it's a more advanced technique. And people kind of start using that in those situations once they become a little bit experienced. But that is an option as well to kind of say, Hey, I'm going to need extra insulin that you think is there. But wasn't there.

Scott Benner 1:17:03
We call that stuff ninja level. So yeah, okay, so All right, so here's what I'm gonna do it because we've been going at it for a while and I want to make this digestible for you. We're gonna stop, I'm going to say thank you. I'm going to ask you, after I get this back, when you come back on and talk with me after I've been using it for a little bit,

Katie DiSimone 1:17:20
I would love to, I think that would be great. And can I have an ask of you?

Scott Benner 1:17:24
I guess so. But I'm not taking my pants off.

Katie DiSimone 1:17:28
So that the ask is that I want to make this system better for everybody else. And make sure it goes there, you know, is able to incorporate all of these things like soliciting impact, feedback. And that job loop observational study is a really important part. And it's the best way that people have to pay this forward and provide meaningful impact. I would love it if people would take a look at the study and donate their data, it can all be done from home. It's super convenient. It's very fast and easy. And it provides important user information, especially from new users, or like just getting on the loop. You're asked questions about like, how did the setup go? How hard was it? Are you technical? Are you not technical? How do you view diabetes, all of that's going to paint this incredibly awesome mosaic of what kind of user experiences have been and just take the system into a better place.

Scott Benner 1:18:27
Okay, so when we've talked about it here, but the next time we talk, I'll give direct, you will be able to give direction instructions to people about how to donate their their data to that. That'd be great. Excellent. Okay, I don't want anybody to worry. I still understand how to be bold with insulin after a day and a half of looping. As a matter of fact, that loop, just like Katie said, is showing me things that I don't think I understood. But I'm starting to, and then I'll be back here to report to you. So whether you want to loop or not loop or lose skipped your Lu, or just keep doing what you're doing, or do what I've been doing for years, which might be what I'm doing again, I don't know how long we're gonna do this loop thing. We're trying it. I can't do a podcast of it don't understand looping. I mean, it's 2018 Wait, is it 2019 Wait, I mean, it's 2019. It is so late at night here. I'm out of my mind. I hope you found this episode interesting. And what Katie had to say intriguing. I certainly did. It got me off my butt to try looping. And as soon as I know what I think I'll report it back here. Huge thanks to the sponsors Dexcom real good foods, and dancing for diabetes. The links to everything you want to know about them are in the show notes of your podcast player or at juicebox podcast.com. But you can always go to dancing the number for diabetes.com Real good foods.com use the offer code juice box, or of course dexcom.com forward slash juice box. I'll see you next week.

Thank you so much for listening today. Please keep Katie and her family in your thoughts and prayers. I'll be back very soon with another episode of The Juicebox Podcast.