#650 Omnipod 5 Talk
Skiy is the mom of a young type 1 who has been using Omnipod 5 for 19 months.
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Scott Benner 0:00
Hello friends, and welcome to episode 650 of the Juicebox Podcast. After this episode was recorded and posted, we learned some new things about Omni pod five. I'm adding that at the very end of the episode. Make sure you find it. today's podcast is me speaking with Skye, Skye is a mom, the mom of Vera Vera is a child who has type one diabetes. About 19 months ago, Vera became part of the clinical trial for Omni pod five. Oh, no, you're interested, huh? Skye is here today to tell us all about it plus other things while you're listening to her, and I, so that's me and Skye. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please Always consult a physician before making any changes to your health care plan are becoming bold with insulin. Were my people who love to fill out surveys. If you're from the United States, and have type one diabetes or from the United States, and are the caregiver of someone with type one, you can go right now to T one D exchange.org. Ford slash juice box and fill out the survey. When you do that. You'll be supporting people with type one diabetes and the Juicebox Podcast. It will take you fewer than 10 minutes. Come on, you can do it. I know you'd rather I keep talking to the music lately. I know you'd rather get online and take another kind of like, you know there's online quizzes that let you know where your chakra is and everything but could you do this for me first please. T one D exchange.org. Forward slash juicebox. Today's episode of the podcast is sponsored by touched by type one. If you're a golfer, listen to this next little bit, especially if you live in the Orlando area. Touch by type one has a big event coming up big big big golfing for diabetes Saturday, April 2 at the Rosen Shingle Creek Golf Course. Orlando, Florida. Registration is available now at touched by type one.org. The event again is on Saturday, April 2 in Orlando, Florida. If you're a golfer, I believe they call those duffers and you want to hit the links. I believe that's what a golf course is called. You should head over there right now and get all signed up. It's going to be a really terrific event touched by type one.org. Now I have to go look up Dhafer and links to make sure I use them correctly. I don't mean to bore you before this, but apparently duffers, not what I meant. That's sort of a colloquialism for a poor or mediocre player. I didn't mean that. I mean, if you're like amazing, like a little tiger woods, you know what I mean? Just like so good at it. I just mean the golf part. You're like Tiger Woods, not the part where he crashed his car all loaded up on the drugs and everything and appears to cheat on his wife and stuff like that, that part. I'm not talking about you. This is going off the rails. But if you're in the Orlando area, and you want to support a great type one charity, and you'd like to play golf, touched by type one.org This episode of the podcast is actually also sponsored by contour the Contour Next One blood glucose meter that is you can learn more about it at contour next.com forward slash juicebox it's an excellent meter. I'll tell you about it later. I'm sorry that the beginning of this episode got so messed up, but you know, just live with it. Okay, here we go. I just want to check first you don't work for Omnipod, right? No, I don't know. How did you get the LMR?
Skiy 3:27
Well, do you want me to say who I am first?
Scott Benner 3:29
Oh, lucky. Sky? Or
Skiy 3:33
should I just be a mystery the whole time?
Scott Benner 3:35
We'll get to it don't worry. Or anxiety usually sky.
Skiy 3:44
I just want to make sure that you know he's forgot about
Scott Benner 3:47
your like he's doing it wrong. He's doing it wrong already. I knew this is gonna happen. No. Go ahead. Go ahead. Introduce yourself.
Skiy 3:54
Okay, well, my name is Skye, and I'm the mother of a six year old type one diabetic named Vera. Okay. But I can move on to the limited market release now. Now that I've said Why am
Scott Benner 4:06
I leaving all of this in for people? I want them to understand in the confused way we tripped at this. So so my question was was going to be how did you get the Omnipod five during the limited market release?
Skiy 4:22
Okay, so we were in the clinical trial. Leading up to that we were in there in the clinical trials for a year and a half. And so we were invited to partake in the limited market release.
Scott Benner 4:34
Perfect so you don't work for anybody. Dexcom on the pod, nothing like that. No, nope. You are not encumbered at all. Then you can say whatever you want.
Skiy 4:44
I am just a person who manages I'm a I'm a pancreas by day that's what I
Scott Benner 4:51
this is good then Alright, hold on a night. I guess I'm a pancreas all the time. I'm just gonna give you off in the
Skiy 4:58
evenings in the weekends off. It's great. You
Scott Benner 5:00
got a better you got a better golfer than I did. Alright, well, let's just find out a little bit about everything first. So Vera six now How old was she when she was diagnosed?
Skiy 5:09
She was two and a half, just like Arden. Oh,
Scott Benner 5:12
wow. Okay. You started off how what was your management like from two and a half until now.
Skiy 5:19
So she, so she was diagnosed. I actually on my husband's birthday, at two and a half, which was a, you know, fabulous birthday celebration in the hospital. She was diagnosed August end of August, we were on Dexcom within By October, and then we I pushed to get her on Omnipod by March. So we did MDI for six months. And then we were on the Omnipod. Your Eros? I believe that's how you say it correct. We were on that until, until we got onto the clinical triangle. We were never on dash. We were never on any other system. Well, you
Scott Benner 5:58
just made me think I've been saying arrows for years. I noise arrows. The Earth, the way that's spelled the way your name spelled, I don't know anything anymore. So
Skiy 6:10
anything, anything could happen? You know?
Scott Benner 6:13
I just thought like, how many calls have I been on where I've said arrows, I wonder if I'm wrong, that well, whatever. He would know. I don't know anything. But what I here's what I know, Ali pie came out with a pod long, long time ago. They eventually made it smaller. That was always just Omni pod. Then they came out with Omni pod dash, which I guess left them needing to call the original Omni pod something I would have went with OG but whatever, it's fine. And then they you know, arrows are er O S is the spelling. So you were always using that version of the pod. You never even use dash one. So you didn't have access to the newer kind of digital display on the PDM. And that kind of stuff is what you're saying?
Skiy 6:56
Yeah, no, it was all new to me. And we never did loop like if we just we were just on the standard system. You know, I actually right, right, when we got onto that Dash was just released and my plan was to get on dash but our insurance, our insurance didn't cover dash up until like, I don't know, I think I got a notice this this this last December that all of a sudden we could get dash. So we were we were just on the original,
Scott Benner 7:23
then how do you end up doing the getting involved in the research for Ali pod five.
Skiy 7:30
So my daughter's endocrinologist office, they were participating in the clinical trial, her endocrinologist that we ended up switching over to she she was like, I don't know, the main main person that was doing it around for us for our, our area. I don't I don't know how she got involved. But um, I got an invitation for the age group of two to five, to participate. And I was like, Absolutely, I'm jumping on that. That's amazing. Plus, I got to switch endocrinologist, which I was afraid to do. Because I I was afraid to, you know, upset my my other one who I wasn't necessarily pleased with the care we were provided. So I just jumped on it. I got a letter in the mail. And then I I called and you know, we were chosen to participate
Scott Benner 8:20
in it. So it's we're recording right now in March of 2022. How long would you say the LMR has been going on now? By the way limited market release for people.
Skiy 8:31
So we i What was it? It was beginning of February, right? Or end of January? January 28? Or something like that?
Scott Benner 8:38
You maybe you're like seven weeks into that part?
Skiy 8:41
Yeah. So we didn't get on we got on, I believe it was like, right, was like February 12, or February 14 is when we got on to the the actual limited market release Balam our product, and also the clinical trial product.
Scott Benner 8:57
Prior to that, I'm just trying to figure out when did you when did the clinical trial start for you?
Skiy 9:03
So we started the clinical trial, September of 2020.
Scott Benner 9:08
Oh, it's math time. So hold on. So September 2021 is a year and then that will still leaves like four months left in 2018. Okay, can you hear me? I can hear you. Alright, sorry. So there's some sort of weird like, like you were gone for a minute. It was not your fault. It was on my side. I was in the middle of doing my dentist on how long had been so I didn't hear anything you said after that. But I'm gonna just go through this again. So September to September is a year that I'm guessing there's like four months last 16 months and now. So you've been doing this like 19 months. You've been on hard five. Is that about right?
Skiy 9:47
Level? Yeah, I think so. I think that sounds right. Yep.
Scott Benner 9:50
Okay. Yeah. I'm so excited to be talking to you. All right. Excellent. Excellent. Excellent. So product that you're on right now in the limited market release. No different than the product you were using during the clip. Trial, I'd
Skiy 10:00
imagine, oh no, it's different. Oh,
Scott Benner 10:04
let's go back to the beginning sky. Okay, let's like we'll get in the Wayback Machine. It's September 20. G's Wow, a long time ago. How does how does it all work like clinical trial, you go to a doctor's office, you it was a trial site?
Skiy 10:19
Oh, it was. So I was so grateful that it was really easy for us everything was held at our endocrinologist office. So we didn't have to go anywhere that we weren't already normally going to. We just ended up having, you know, we had to go there more often. But then COVID was going on. So all of the visits that would have been in person and extra in person visits, were just fun visits,
Scott Benner 10:41
I see. Is there a bunch of training in the beginning? How does that work?
Skiy 10:45
So we went in, and I signed a bunch of paperwork, you know, legit non disclosure, and, you know, paperwork saying, you know, that they're, obviously it's a clinical trial, it's not FDA approved, anything could happen. And you know, there's a risk risks involved. And I'm like, well, that's just like diabetes. So there's just risks involved. So that wasn't a problem to me. But I, you know, we signed everything, I had to fill out a bunch of surveys, like pre, you know, how we manage things, I had a current at that at that current time, so that they could get a judge of where we were at with our management care, before we started the trial, and then we were there for a couple hours for that first visit, they trained us on how to use the, the new pump, we put it, you know, got it, got one on her, got all of our settings in and then we were sent home with a bunch of supplies. And they tracked everything they monitored or monitored heard, heard numbers the whole time. And then we had, I cannot remember, I want to say we had like monthly phone calls. As the as it went on, and they kept doing an extension that phone calls or the visits would become like spaced farther apart. But at the beginning, they were they were pretty close together just to you know, check in and make sure everything was okay.
Scott Benner 12:04
Okay, and so, did they ask you to manage any differently in the beginning? Like, I'm talking about the clinical trial part right now? Like, were you asked to just not do anything, like put in the carbs and not touch stuff? Or how did that all go?
Skiy 12:20
Go? I mean, I don't, I don't remember if it was necessarily said to us not to change any of the settings I, I didn't know that I was, this is gonna sound kind of ridiculous, but I didn't know I was allowed to even, like, you know, go make any changes to my daughter's settings or management, aside from what the endocrinologist were telling me, which is, I don't know. So I never made any changes. But there was a, there were a couple things we had to do. Like we had to participate in some activity. sessions where, you know, they wanted her to do like an hour or so of activity on a day. And, you know, I don't remember exactly how it was, like, you, you know, don't do it with with food or, you know, use their they have an activity setting that is on Omnipod five that they were kind of testing out. So we had had to do a little bit of that, but we didn't have to do anything crazy. Like there wasn't anything like, you know, she has to fast or we're gonna try, we're gonna try making adjustments to things to see how it happened. Like what happens? It was just kind of like they were monitoring how what, how we managed it and how our blood sugar was managed. And you know, nothing, nothing insane. Nothing crazy.
Scott Benner 13:33
And then they would take they were looking at her Dexcom data.
Skiy 13:36
Yeah, yeah. And
Scott Benner 13:40
there's nothing for you to do really, except live with it, I guess.
Skiy 13:43
Yeah, pretty much. It was just live with it. I mean, there was a couple of times, like I said, we had to do some extra activity, like they said, Okay, you know, have her go outside and play on her swings or ride a bike for an hour? And then let us know when you're doing that so that we can monitor it.
Scott Benner 13:58
Okay. Interesting. And how long did this go on for?
Skiy 14:04
The What do you mean, the this process?
Scott Benner 14:07
Like Was there ever a time where you were just using it? They were collecting your data, but they weren't really asking you to do anything?
Skiy 14:12
Yeah, most of the time. I mean, almost like 90% of the time we were they were just collecting our data and not asking us to do much of anything other than just, you know, manage her
Scott Benner 14:21
normally, they didn't need to know what she was eating or anything like that.
Skiy 14:25
No, they never tracked what they what she was eating. They never asked me anything like that. It was just, you know, treat her like, like you normally would, and we'll see how it see what it does.
Scott Benner 14:37
So initially, in those first, like, let's say the first six months of doing this, did you notice any difference improvement, decrease anything at all? They was notable?
Skiy 14:48
Oh, I mean, I the biggest thing when we started was we could sleep. Like we were able to actually sleep and I remember when I was in the office and one of the things that they do Hold me, as you know, because they had already been doing the trial with older age groups. They were like, one of the biggest things that we've been told is, you know, parents are getting, they're getting more sleep, and I just, I just bawled like, I just broke into tears. And I'm like, Oh my God, that would be amazing. I would love to sleep.
Scott Benner 15:18
Because I'm going out of my mind.
Skiy 15:20
Right? At the beginning, before we even had the pump, and we were on MDI, and before we had the Dexcom, like, the month, the month before, we had Dexcom, I thought my husband and I were going to get a divorce over the diabetes because of lack of sleep. So sleep was sleep was just huge. And that was one of the biggest things that I noticed was definitely we were able to sleep it was man definitely managed a lot better overnight, with the algorithm. I noticed that she, I mean, she was just in a better range. I, you know, the way that I was doing things was, like I said very, very before, that was very much just based on following my endocrinologist instructions, and not swinging from that. So based on doing it the way that they told me to do it, and then allowing an algorithm to do it, there were definitely noticeable changes.
Scott Benner 16:12
I'm gonna get back to them in a second. But so at that time in her care, you did not know about this podcast.
Skiy 16:20
No, so I didn't know about your podcast until July of last year. I have an adult diabetic friends type one diabetic friend, and she her name is Lisa. And she told me about your, your podcast, and I, I didn't know that. So I didn't have a phone plan that had like unlimited data. You know, my husband and I shared data. And I was like, Oh, well, I don't think I can use a podcast just like listen to in the car. Because I'll lose my data. I didn't know that. That was a thing that, you know, I didn't I that I wouldn't ever, like venture out into it. I just, you know, it's like, oh, podcasts, maybe they're not for me. I
Scott Benner 17:01
just for clarity, you could download them over Wi Fi and listen to them.
Skiy 17:04
I know. Believe me once I like tried it. I was like this. What was I doing? Like how stupid
Scott Benner 17:11
but I just wanted to be sure that you were managing in a very, like doctor office centric way. There's nothing particularly special, like what were her a one sees like prior to the clinical trial.
Skiy 17:23
So we were when we were diagnosed her a one C was a point five, and then up into up till the clinical trial. So we didn't start the clinical clinical trial until what she was in 18. She was diagnosed in 18. So two years, pretty much into her diagnosis. And her her agency was 7.9.
Scott Benner 17:44
So you're right. Seven Nights at a time. Okay. Yeah. All right. Well, then, so 8579 clinical trial, no podcast, what's the next day once he after the Omnipod five.
Skiy 18:00
So it was coming down. That was another thing, we definitely noticed. She was in range, which I, you know, I didn't even know about being in range until we got on the pod five, like I had the clarity up, but I didn't really think about the amount of time that she was in, in any sort of range, I know that it can vary based on what your, you know, your targets are, and why not and what your settings are. But, um, you know, they she was in range, like, 79% of the time and her agency was slowly coming down. Like it went from, like, 7.9 to, like, you know, 7.6 7.5 like very little, little, little increments. And then I, I didn't have like a noticeable note, like a really big difference until I actually started listening to the podcast. I, I started listening to you. And I was like, I didn't I like this is this just changes everything. You know, like, I can plan sky,
Scott Benner 18:55
what were you going to do? You need to be able to take phone calls. But when the Obamas call you for lunch, you need minutes, you know, they mean,
Skiy 19:02
exactly. Hold on to my data. So I was like, oh my god, yeah, I didn't know that I was allowed to make adjustments. I didn't think about all of these things. You know, all this frustration. My husband and I have had all of these years. It's like, it could have been avoided had I found Scott sooner. So, um, January, it was like the end of December. I had been I've been binging you since like October of last year. And I was, you know, I, I was like, I think I can I think I'm going to make adjustments to our settings through the clinical trial. There was a woman that you had had on, she was participating in the clinical trial. And she was talking about how she, you know, needed to make changes based on what you had. I think you were helping her like you were following her for a little bit. So I was like, Oh, well, she can make changes. I can probably talk to my endocrinologist office and see if they'll let me to, you know, make changes because they didn't kick her off the trial obviously. Right. So I emailed my nurses and I was like, listen, we can do this better. You know, like, I want to do this better going into 2022, I want my daughter's a onesie below, below or at six, at least, but definitely below seven, I'd like to get it to six, like, that's my goal by the end of this year. So I just started making changes on what I thought would work. And so right before we got off the clinical trial, which was I, in the beginning of February, right, when we got on the limited market release, her agency was 6.8. And that was just a lot that went from like, I think, like seven points, I want to say like 7.4, or 7.3, something like that to 6.8 within like a month of making the changes that I felt, you know, I got from you pretty much like I got out of the podcast, right?
Scott Benner 20:51
So this is so interesting. So I just want to recap a little bit when you are doing this on your own, and you're doing what the doctor's office is telling you, you're 798 in that range, the Omnipod five goes on. But still, your settings are based on what you and your doctor have talked about. And even with that you got more time in range. And you did lose a half a point off a one. See, it sounds like so then the next point, almost next point comes off seven, four to six, eight in a month. What did you change in that time that made that difference?
Skiy 21:28
So on my trial, our target was 140. And I like that's what my doctor's office had us set, it was 140. And I was like, Oh, well, I didn't know, we could go lower. I didn't know we could go to 110, which is the lowest unfortunately that the system has, but it's still good. So I I set the target to one time, that was one of the biggest things I did and then listening to your podcasts. And you're talking about, well, if you can manage at one, one at 200, you can manage lower than that, you know, so I started to set, set her alarms back on her Dexcom to, you know, lower to go off at a lower rate, like lower amounts. So like right now her alarm goes off at 130. Whereas before it was going off at 180. And they were okay like that, that was fine. You know, I've always been told, like, that's great. You know, 180 is good, that's fine. So I didn't, I didn't know it was I didn't think it was wrong. Like I thought what I was doing was right. But 130 allow, it allows me to catch it a lot quicker. So that was the two those are the two biggest things I did. And then I I've always Pre-Bolus. Um, but we've been better at making sure that we do it like sometimes when you have a six year old who wants to snack and you know, it's it's not always the easiest, but we've we've been better about just trying to at least make sure we got 10 minutes, at least a 10 minute Pre-Bolus? And
Scott Benner 22:53
how do you? How do you address A? Yeah, this is my question, how do you address a higher blood sugar on the algorithm? So if you, I don't know, don't Pre-Bolus a snack and end up at 130 you get a little beeping? What do you do then to do? What's your next step?
Skiy 23:14
I give her more insulin. I just I override it and give her more, I obviously I did something wrong or, you know, she got excited or something, you know, something, something happened that it goes up higher than I was expecting. And so I just give her more insulin.
Scott Benner 23:30
Okay, so you leave the algorithm to do that?
Skiy 23:35
Well, so the algorithm is going to just continue to give her you know, many, many bullets is like every five minutes, if it's catching that she's if it thinks she's gonna go high. But I, I just give her more on top of that.
Scott Benner 23:49
Okay, so you just get ahead of it, instead of waiting for the algorithm to do it. You do it yourself. Now, when that happens, does the algorithm not believe she has too much insulin and start taking basil away and you get another high? That doesn't happen?
Skiy 24:00
Um, I don't know we've had you've had situations of bowls like, or I've been able to get her to come down and you know, get her at a good steady level. And then I've also had situations where we end up with a low or we ended up with it going too high, because it'll cut off the that basil, the little mini, the little mini boluses or it'll cut off the basil if it thinks that
Scott Benner 24:24
you've given too much. Yeah, right, exactly. Here, go back and tell it. My example here would be if you had a meal at noon, and you told it down 30 carbs, and then an hour and a half later, you're at 130 Diagonal a barrel. And you come in and say, Alright, you know what, maybe that was 40 carbs, I'll put in another unit of insulin to cover the next 10 carbs. But you can't go back until the algorithm I really wish you would think about that meal is 40 not 30. If you can't do that, and if you were to put in a new 10 carbs at 130 to try to tell the algorithm I believe there's 40 carbs in there. It messes up the timeline a little bit, right? Because now those 10 carbs aren't really. They're not new at 130. They were new at noon. That'll make sense.
Skiy 25:13
Yeah. Okay. That's the other thing on. Oh, go ahead. Do you have another question?
Scott Benner 25:17
I don't know. I'm thinking through it as we're talking. So, you know, I don't prep for this at all. So so so when you put the insulin in, what could happen is that the algorithm could think, well, she put in more insulin, not that it thinks of you as a person. But that would be weird. If it did. But she, she put in, you know, another unit, we're just making up numbers. But the kid only 30 carbs an hour and a half ago. So now I have to quick take away the basil to try to make up for this extra insulin, which the ALS, the algorithm is going to see is unnecessary, because the algorithm believes that it's going to fix this 130 Eventually, you're fixing it sooner. So that the 130 doesn't become 170 before it turns back into 110. Again, is that all right?
Skiy 26:03
Yeah, I think so. Okay, um, I mean, it's not nor it doesn't normally cause a huge problem. I mean, sometimes they do end up having to, like, give her a little bit of extra uncovered food. If I do notice that maybe I maybe I did something wrong. And the algorithms between me between it giving me between me giving it sorry, me giving her insulin and then the algorithm giving her some as well. I mean, I have been told by like the nurses Hey, you know, watch when you're doing that because it is giving her that those many micro doses so you don't want to you don't want to overdo it. Yeah.
Scott Benner 26:40
Where do you have the most success with her blood sugar sitting on the algorithm? Like when you have stability away from food and away from cotton away from mealtime insulin? Where does she sits daddy?
Skiy 26:54
She's like, 130, which I would like her lower. And I have her target at 110. But I can't seem to get it to come down more. And I don't know, I'm trying to figure out like why why why that's happening. But she's usually if I can get her to sit steady, she's, she's sitting steady at 130
Scott Benner 27:10
What settings do you have access to with AMI pod five? Basil.
Skiy 27:16
Yeah, I mean, I can access every I can change everything I have. So I just have one basil program, because this is all all of that is new to me, you know, trying to figure out different different bases for her and whatnot. So I just have one Basal program that I use, you can use, you can add up to 12 different programs. So I just have that I have
Scott Benner 27:37
12 different segments in a 24 hour period or 12 different
Skiy 27:40
programs like 12 Different I believe it's 12 different programs like she's on bi a Basal program one right now, because I just I'd left it at whatever the generic name is for it, but you can add more in there and you know, rename them for, you know, activity or whatever you want to do. But I'm not comfortable and confident with that yet, so I haven't know that's fair.
Scott Benner 28:02
I was wondering though, like, like, so what settings? Like forget, like when you leave the algorithm like when you you know, open it up, but when you're inside the algorithm, it's making decisions based on basil, what else is there a meal ratio?
Skiy 28:18
Yeah, so it has all of the it has like the your insulin to carb ratios. It has the insulin action time which I just changed that after listening to one of the podcasts to see if that will maybe help us at all Oh, I don't have it in front of me. I left it out with my husband but um
Scott Benner 28:40
we'll ratio insulin action time basil. Is there a insulin sensitivity?
Skiy 28:49
Um, I believe there is and then it also does you know, you have your max your max Basal rate so it won't whatever that set out. It won't give more regardless of what's going on, like if I have it at like point five per hour. It's not going to give her above that for the hour.
Scott Benner 29:06
As if you said that as the max.
Skiy 29:10
Yeah, so yeah, whatever the max is for that it won't give them more than that.
Scott Benner 29:15
I didn't mean to step on you I'm sorry. Oh, no, go ahead. Correct. But you have also correction factor right like one unit moves are so many so you have Okay, so you've insulin action time correction factor meal ratio and basil. That's a lot to work with there
Skiy 29:32
we have our targets it you know, factors in the targets. Yeah.
Scott Benner 29:35
And it's shooting for you have it shooting for 110
Skiy 29:39
Yeah, I haven't won 10 all and I have 110 and then correct over 130
Scott Benner 29:43
But it can't get to 110 even overnight.
Skiy 29:46
It'll get I mean, it gets her to one time but it doesn't hold her steady at one time.
Scott Benner 29:50
She'll drift back up. Yeah,
Skiy 29:52
I didn't mean overnight generally, if I can, if we can. If we're having a good night like if we go to bed and we aren't having any problems with we just changed changed a pamper, you know, we had a really QRP meal or something and I was trying to get her to level out, then she'll she'll sit around 110 At night time when she's not really doing when she's not doing anything except for sleeping. But during the day, I can't get her to, to 110 I mean, she'll go to it, but she's not gonna stay at it, she'll stay at about 130 What's your Basal rate? Um, it's very, um, can I I don't have her. Do you want to do you want to leave and come back? Well, just Can I go grab it from my, my husband really fast. I would love that. Alright, give me one second, okay.
Scott Benner 30:36
You guys are getting an ad right here
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Skiy 34:10
Okay, so let me go into her Basal.
Scott Benner 34:12
You don't mind talking about this? Do you
Skiy 34:15
know, um, hold on a second. Oops, don't switch. I didn't mean to switch. Turn it. So we just got so be when we were on the clinical trial, you know, it was just the provided cell phone that we used. And then when we got on to a limited market release, we have used the PDM. And then I got the Samsung Galaxy S 10, which is the only one that's supposed to be able to work with this right now. And we had to carry around both devices for the last month, which was really frustrating because the app wasn't ready. Like it wasn't available. So the app, the app just became available a couple days ago. So I finally just switched over to having the one phone again which is really nice.
Scott Benner 34:58
Exciting. Yeah. Things are getting closer. Then.
Skiy 35:02
Every time I go, I take my daughter out and I have like all of her device. I have my cell phone and then this cell phone and then the PDM. Everyone's staring at me like what kind of business? Are you running?
Scott Benner 35:11
I'm selling? Leave me alone. I've got bills. Damn it. So what's your what's your Basal freight? Sorry? Oh my god, what does she wear?
Skiy 35:23
She weighs 50 pounds. So let's see from 12am to 6am. She's point three, five, from 6am to 12:12am. to midnight, she's point three.
Scott Benner 35:37
So I'm just gonna guess that our Basal is a little low.
Skiy 35:40
And it could be I've been messing with that too. Because the settings that the way they were, you know, the endocrinologist told me to have around Sorry, I'm stumbling on my words before. They were lower than that. So I've been like slowly increasing them. I'm just doing it with caution, because
Scott Benner 36:00
I don't please does she get low? Often?
Skiy 36:03
She you know what the clarity app said it? It's like been 4%. Low over the last seven days, which I don't think it's bad, or what are we calling Low? Low for that? It's thinks that low is below 70. Like I have heard settings at 70 to 130. So, but I don't she doesn't like she'll go. I mean, she's had some lows. But she generally she goes low. She's in the 60s for a little bit and then comes up.
Scott Benner 36:27
Okay. Well, I mean, I think what you're doing with the Basal is like a good move, because there's probably space in there with the Basal. I mean, if you're, if you're correcting 130, for an example, and it gets down to 110, and then wants to go back to 130, something's not holding it down. And the algorithm is thinking. I mean, the algorithm is thinking that you have too much insulin, so the correction looks like too much insulin to it. But if your basil was heavier, it might not feel that way. So there's, there's, there's space in there for you to figure it out. I think you get the basil straight first, and then probably look at the correction factor and make sure that it's it's pretty accurate. One unit per whatever.
Skiy 37:13
I definitely don't think it's anything wrong with this system. I think, like you're saying, it's just things that I need to get adjusted. On my end, I think the system is doing a fine job.
Scott Benner 37:23
No, for sure. I mean, it sounds like it to me, I'm just trying to help you figure it out. While we're talking about this at the same time, that's all.
Skiy 37:31
Yeah, I mean, if you could help me, that's great. You've helped me more without me even like meeting you. In the last, I don't know, six months, then anybody else has helped me in the last three and a half years. So I'm
Scott Benner 37:46
glad to know that I'm happy. You're feeling better. Really? Seriously. It's a big deal. I mean, she's six, eight versus eight, five and a couple of years.
Skiy 37:54
So yeah, yeah. And I'm confident that I can get her down to six. Like that's, that's my goal. That's what I'm gonna do.
Scott Benner 38:01
Oh, I think you can do? Yeah, no, for certain. Tell me a little bit about the sleeping for a second. You. You and your husband are having loving sex now instead of angry sex or you're not yelling at each other anymore? What is happening? What have I done for your life? Exactly.
Skiy 38:17
We have a six month old sleeping in our bed. So nothing's happening.
Scott Benner 38:22
We just not yelling at each other at least.
Skiy 38:25
We're just not yelling. Wow. Yeah, mad about diabetes. Basal, you know, we're married.
Scott Benner 38:35
I always think that some non married people must hear this and just be like, Oh, god, wait, what's gonna happen?
Skiy 38:41
I get worried when people are like, Oh, well, my husband and I don't we don't argue like, something's wrong with your marriage,
Scott Benner 38:45
you're gonna end up killing each other, then you're holding it. All right. I can be one of those stories, murder suicides, like, you know. They just they never seem to fight then all of a sudden, they just burn the house down with each other. Great. So okay, so just in general, better sleep. Right? More more consistent, solid sleep, I'm assuming.
Skiy 39:09
Yeah, I mean, I I'm not, I'm not worried about her going. Having a really drastic low in the middle of the night while we're sleeping. I do wake up to alarms. You know, especially I have her I have her at 130. And so if it drifts up even a little bit above that, then I wake up from from that, but it's nothing like it used to be
Scott Benner 39:30
I'm incredibly excited to get a hold of it because a 110 an average blood sugar of 110 is a 5.5 a one C so it's not out of the question to make it work with the device the way it's set up right now. I mean, the problem is that if you're not always I mean there's variables right? So you're not always hitting correctly and you you that 110 becomes 130 or 150 or whatever and then slowly this five five average because Not just five, eight, it becomes six, whatever. And that's how, you know, with the goal of 110 is a great goal. But if you're not keeping, I mean, if you're if you're spiking, spiking spiking, then obviously you're not going to get the 5581. Seattle, I'm trying to say that I think there's a way that based on how the algorithm is written right now, if you have your settings, right, and your Pre-Bolus thing, I bet you get closer to that 110 With more consistency, is my guess.
Skiy 40:29
Yeah, I gotta, I have to get the spikes to to stop because we do have spikes that I I'm not able to. I guess I don't know what I'm doing wrong. But she shows spike after meals. And like last night, she had a rough night with high blood sugars, which was due to like the one of the things that that does kind of is a bummer. You can't use the extended Bolus, unless you get out of the automated mode. And you can't use the Temp Basal unless you get out of automated mode. And you know, before we got on the system, we were using the extended Bolus and the and the Temp Basal a lot. And then we got on the system. And that was something that we we weren't really supposed to touch that I was gonna say that you were asking about the what happened during the clinical trials. So we didn't use those features at all. Because you know, the algorithm is supposed to be better than that. It's supposed to do a better job than what you know, we're we do. But I think there's scenarios where really, it can't predict it doesn't know what you're feeding, like what you're eating.
Scott Benner 41:30
So you can't know the list laid out the algorithms not going to overcome like for example, if your kids Basal rate should be more like five, like point five, and you have it at point three, the algorithm can overcome that. If you're going to eat cheeseburger and french fries, and have a massive impact from fat 90 minutes after you've eaten. It has no way to know about that. Like there's there's things that you can't do now without an extended Bolus, like me for me. I mean, I Bolus for fat. I just make an extra Bolus for fat. Like I know some people probably make extended boluses. And that's great. But I just usually wait a little bit of time and then Bolus for the fat before the spike happens. That just
Skiy 42:14
we weren't doing it all until I listened to that pro tip.
Scott Benner 42:19
You're gonna you'll listen you're you're on your way. You're totally one of these people who six months from now it's gonna be like, I have a five nine a onesie. I figured it out like for my daughter, I got it straight. So Oh, no, you will, especially now that you're sleeping more to being really serious about that. The Sleep part. We don't talk about nearly enough. It messes with you in so many different ways. And it stops you from making good decisions and remembering to Pre-Bolus and remembering to do other things. Because you're exhausted all the time. I I'm interested to see how you are just in a couple of months after extra sleeping. You know what I mean? It's gonna be a really big deal.
Skiy 42:58
I think that I I think that's going to be a huge thing for a lot of people. Just being able to get to sleep is is great. And I mean, I've been sleeping pretty well for the last. What did we decide? It was 19 months on whatever we decided since I've been on them. So you know, we've we've gotten pretty decent sleep for a while. Which I was like, but then I had a baby. I threw baby in the mix.
Scott Benner 43:23
I didn't do that. You know, you guys stop fighting long enough to make a baby. That's not you should
Skiy 43:27
know. IVF baby, I had to plan for him and spend a lot of money on on
Scott Benner 43:33
going to a movie or something. That would have been a better use of your time. I mean, I'm sure the kids terrific. I'm not saying it's great. He's six months old. You don't know if he's great or not.
Skiy 43:47
That's true. He's cute. He's super cute. Well,
Scott Benner 43:49
there you go. It looks good in the Christmas card. That's all you need. Okay, have a quick question. That's nothing to do with any of this. Are you from the northeast? You don't tell me exactly where
Skiy 43:59
I'm from. Do you not want me to? Well, you don't make
Scott Benner 44:01
worse although Well, are you? Are you in mass?
Skiy 44:06
No, I'm in Ohio. Okay, I'm born. Born and bred in Ohio.
Scott Benner 44:12
I've just been trying to figure out because you and one. So there's a person I know who's gonna hear this. Who says I'm the pod? And I don't even know. I don't even know if that person knows. That's how they say it or not. But they're the only person I've ever met who says that? And then you say it that way. And I was fascinated for a second.
Skiy 44:28
So how should I be saying?
Scott Benner 44:30
I mean, I don't know isn't an omni pod?
Skiy 44:32
Oh, I don't know. Uh, you do say that. I? I say Omnipod
Scott Benner 44:36
No, I know you do. And I'm not telling you. You're wrong. I'm just saying I don't hear it that often. I was trying to figure out if you and this person were from similar places, but you're definitely not.
Skiy 44:44
So I'm from Ohio. No,
Scott Benner 44:47
it's fine. I just I was like, I've been wondering for 40
Skiy 44:50
minutes. You know, Scott, I just pronounce things weird because I have an i in My Name Is your mother. It's my mom. My mom did it.
Scott Benner 45:00
wonder if that is just have something to do with it. Maybe you do think of eyes differently than I do, I think. I don't know. Okay, so where are you? My question here? Are there anything are the things about it you don't like?
Skiy 45:19
I don't like that I if I get out of automated mode to use the extended Bolus feature or the temporary the Temp Basal rate that it doesn't remind me to go back into automated mode, like it'll just keep me in manual and I, I want forever. Yeah, and I, and I'm, I've had two kids like my brain is, I have two kids, I deal with baby diabetes, my brain is shot. So I can't remember. And then I'll find myself, you know, she's she's rising up. She's high. And it's my fault, because I didn't put her back in automated mode.
Scott Benner 45:52
Oh, okay. So interesting. So, so Arden uses loop at the moment, it doesn't tell you when, like, if you open the loop, it doesn't remind you that you've opened the loop. So and, oddly enough, from hearing people talk about diabetes for so many years, I would tell you that most people want fewer reminders from their devices, not more. But I take your point. So you're saying also, how do we think about this, like in loop, we say open the loop, close the loop. But when you leave the algorithm on the pod five, like, is there a certain thing you're doing? Is there a function on your automated or you're in manual, auto or manual, okay? Right? That's easy. So when you go into manual mode, it stops making adjustments to oh, it stops making
Skiy 46:36
a manual manual just turns it into a regular pump, it just takes your settings and it just gives, you know gives based on the settings, it doesn't give those micro boluses or stop the boluses of the right or the
Scott Benner 46:50
right. So you're seeing when you go into manual initially, it's so that you can make a Bolus on your own for something. But then if you forget to put it back on, it's just running her Basal at point three, five or point three, and then she's rising up.
Skiy 47:02
Yeah, I mean, it's only if I decided I want to use the extended Bolus feature, which I know, you know, it's I don't have to use it. But there's been some times I'm like, I think I will do better if I do do this. Otherwise, like, when we were on the clinical trial, and we we never used that feature, we would just manually do it, where we would go, okay, you know, we're gonna split this meal in half, we're gonna get 50% now and in like an hour, we'll give the other 50%. So we would just do it that way. But I thought, you know, once we got on this, I would start just us trying to see if that would how that would work out with the extended Bolus, since I didn't get to play around with it. And I, I've just caught myself in a couple of situations where I don't put myself put her back end. And
Scott Benner 47:45
so your example, your example is again making me think your basil is not high enough. Okay, because if you probably right, because when the loop, oh, sorry, sorry, on the bottom, when it's an auto mode, there's so many different words. So it only been five is an auto mode. And the algorithm is working. Then if you're at point three, five an hour, but it thinks you're going up, it's giving her more than point three, five up to your max, what's your max again?
Skiy 48:14
Her max right now is only point five, right? It's point five per hour.
Scott Benner 48:20
I'll tell you what, if I was you, and I'm certainly not, this is definitely not medical advice. I'd make a Basal I'd make her Basal more like, well, let me ask this question. What's that? Oh, by the way, I just got a text. I just looked up on my computer. My wife's texted me Wordle in three, we are in a Bloodsport over who can complete Wordle quicker every day.
Skiy 48:44
Or cancel the rest of this go play Word.
Scott Benner 48:47
I have to go right now and beat her
Skiy 48:49
better than you're gonna give me advice. And now No, no, no, just
Scott Benner 48:52
I'm just amused. She knows I'm doing this with you. And she knows these things pop up in front of me. And that's how much it means that we're she's like Wordle and three, that basically I have to bleep this out what that basically means is you I've got you in vertel today there's no way you're
Skiy 49:10
I will be rooting for you. Do your work your way. Yeah, I just checked for Max Basal rate is point five.
Scott Benner 49:17
Okay, so my expectation is, is that based on our weight, she could probably handle more Basal and so I don't know if it's actually going to be point five but my question was going to be how often does the algorithm maxar Basal out? Can you see that?
Skiy 49:33
You know what I haven't I can I can look in history and see
Scott Benner 49:37
I'm excited because we're about to fixer Basal rate together. That's amazing.
Skiy 49:40
No, it doesn't say on here like you're maxed out.
Scott Benner 49:48
You can't see how you don't see like a graph.
Skiy 49:51
Like I can see like her and so if I go into the history, it gives me a summary of, you know what, what each of her her glucose numbers were in her Bolus is where and then the carbs that we did. And then if I go to auto events, it'll show me when it gave her but you know, insulin. So it'll show me like every five minutes if it gave her something or if it didn't, but it doesn't tell me on here, you know you've reached her your max. So if
Scott Benner 50:13
it's trying to give her insulin, and it's hitting her max over and over again, excuse me. Then my expectation is that you should make her basil that already and increase the max to give it more leeway. Okay. Right. That's what I would do if I
Skiy 50:32
raise her Max basil rate, obviously, as well.
Scott Benner 50:36
Yeah, I mean, definitely I would. Okay, right. So I know you don't want to make it crazy. But I'd like to, I'd like to see you give the algorithm some more space to work.
Skiy 50:46
So she's what she's with me 24/7 I homeschool her. So I I'm not afraid of like, you know, giving, putting her in someone else's care with changes. So I don't mind making changes. Obviously, I just, I'm just do it slow. I do slow changes like that way I can kind of keep track of like, what did I do? I
Scott Benner 51:05
think you're smart. I absolutely do. I'm not being sarcastic. I know. You're from Ohio. Possibly. You're not gonna like be able to hear it. But if this was if Vera was me, I'd make her basil point five and I'd make her Max basil like a unit. I'd be like, let's see what this thing can do.
Skiy 51:23
I'm gonna see what happens.
Scott Benner 51:25
You know, I mean, cuz then you're given the, I have to think of another euphemism. I was gonna say you're giving the algorithm more rope. But I don't think like a hanging is the way to think of it. But you're giving it more. You're giving it more leeway to make decisions on its own. Okay, that's what I'm thinking. I'm thinking that. I'm not listening. This is not a rule. But little kids prior to puberty, point one an hour per 10 pounds is a fair guess. So if she's point three, but she weighs 50. I think she's probably more like, point 4.4 or 5.5, something like that. Okay, I still I think point three is too low for her weight. And based on what you've said prior about where she's sitting stable?
Skiy 52:10
Well, I mean, she was she was lower than point three before I put her at point three. And I did point three made a difference.
Scott Benner 52:17
Oh, no, I don't you're telling me she was like point two while she was 50 pounds, like
Skiy 52:21
2.25. And her Max Basal rate was point four Sky Garden.
Scott Benner 52:28
You people all just stopped going to the doctor and giving them their $40 She sent me the $40. Like, that's just ridiculous point to over 50 pound kid is. I mean, there are some people who there are some people who don't follow the kind of rules their bodies don't need as much as maybe they need more. I'm not saying that. It's not it's not a blanket statement for every person. But point two for a 50 pound kid seems ridiculous to me, especially if they're not having any lows and your stability? Is it 130?
Skiy 52:56
Well, I think that the doctors goals is just to keep them. It's like I think our endocrinologist wants to keep her healthy. But I also think that they see a lot of people that don't manage diabetes very well, because I've I've been told by them like, you know, you you want to do better, but you're also doing really good compared to a lot of other
Scott Benner 53:12
people. I don't know what that means. That's both.
Skiy 53:15
Yeah. I personally like I, I think that they they can be they can do better to to help everybody, everybody, everybody has a different goal. And, you know, I want my daughter to be lower, have a lower UNC and be more in range. And, you know, I'm willing to put in the work to have that happen. But maybe, maybe they just don't have people that are willing to do that. And so they keep them at a safe. I don't know what maybe I'm making excuses. I'm making excuses.
Scott Benner 53:46
I'll tell you what, I'd like to see you stick up for that husband, the way you're sticking up for this doctor right now. What do you think?
Unknown Speaker 53:50
I don't know, I bet. I'm gonna tell him
Scott Benner 53:56
that you said I'm smart. I also told him you should have loving sex with him. But I don't think you're gonna tell him that part. Are you?
Skiy 54:03
I might I might go, I'll see.
Scott Benner 54:06
What I was gonna say is, if this is controversial, I don't know what to say about it. But if your settings are right, your blood sugar would be lower. And right to say that, you know, to say that I'm 130 is great, because other people come in here with two hundreds. I don't even know. I don't I don't understand what that means. He mean, like it would, it would it would be like if you walked into the doctor's office, and you're like, Hey, how are you? It feels good. Let me take a look at it looks at and goes. Hey Skye, you have a seeping wound on your arm, but we're not going to treat it because I just talked to somebody whose whole foot fell off. Like what is like, what does that mean? Like you're doing so much better than the lady whose foot fell off. So we're gonna we're just not even gonna dress this one because you're way ahead of her. I don't get I think it's laziness. I don't think the doctor is not a talk to people. And I think and with due respect to them. There's a rainbow of people that they have to To speak to and I'm sure that that goes. I'm sure that rainbow has a lot of different stripes in it. Some of those stripes are probably motivation. Some of them are probably economic, some of them are probably intellectual, there's probably a lot of different things about people, right that they have to deal with. But that doesn't change what the settings are supposed to be. Yeah, so the settings are the settings, given somebody point to who needs point five, and telling them they're okay, cuz they're doing better than somebody with a nine a one C, like, I don't understand what that means. So, you know,
Skiy 55:35
this is why I was in a bad loop of just keeping my daughter's a one C in the high 70s to low 80s for a year and a half, because I've just followed what I was told.
Scott Benner 55:47
No, of course, no, no shade on you. Like that's just what happens to people. You don't I mean, you got it now you're on your own. No, no. Do you think we should call this episode on the pod five and loving sex?
Skiy 55:59
Yes, you're gonna be disappointed if he doesn't get the loving sex.
Scott Benner 56:08
I don't even know why I said loving I think because otherwise I think of it is like angry when you're like, when you're arguing, but you're still doing it. You know? Like, you're like, this is off the rails guy. I'm so sorry. You probably wanted your mom to listen to this.
Skiy 56:24
Okay. Yeah. Fine. She was like, if you put if you knew my mom wouldn't be a big deal.
Scott Benner 56:30
Okay, all right. Number okay. Anyway, I'm being like, I'm joking. And at the same time, this is all tied together. If you don't think that your personal relationships aren't tied to your kids blood sugars or your blood sugars your way wrong. You know what I mean? Like, because when blood sugars are fluctuating when there you're constantly feeding lows or stopping highs or staring at highs, these things are stressful. They are omnipresent. They don't let you focus on other things. You take your focus off the things that are important, other parts of your life devolve. It's all like it's all touching each other. And by the way, did you hear a second ago when I said on the present? I didn't say I'm the present. Oh, got it. Okay. I could. I
Skiy 57:15
could I have said I'm the president. But I I would have said on the present. I
Scott Benner 57:19
know you would have but you're from Ohio, so I can trust you. Guys, what do you guys go out there, Dave Chappelle and Drew Carey said about it.
Skiy 57:26
We do have your carry. Yeah, I don't. We have Machine Gun Kelly. I saw on the news. today. He's holding a concert in Cleveland. It's there or he's doing a well he's from he's from Cleveland. And I'm outside of Cleveland. I'm like 40 minutes outside of Cleveland Show Helens
Scott Benner 57:41
a bunch of property in Ohio. And he lives there full time.
Skiy 57:46
I don't know why.
Scott Benner 57:47
He said I've heard him in an interview. He said he likes the small town feel of where he's at? Oh, I don't know. You're like, I want to get the hell out of Ohio,
Skiy 57:57
too. But I know my family would never visit me.
Scott Benner 58:01
Oh, they definitely wouldn't. I my brother moved to Wisconsin. I've still never seen Wisconsin. He's like, why won't you come here? And I said you moved to Wisconsin. No offense, Wisconsin. But I mean, they're like, Ohio, right? Yeah. Well, I don't even know what that means. I mean, there's a lake here. I can see it. My brothers. It comes to the lakes. I'm like, What do I do eight minutes after I've seen the lakes. What are we doing next? So my vacation time? You don't I mean, sky like I don't get a ton of time off.
Skiy 58:26
You don't want to go to Wisconsin? Well,
Scott Benner 58:28
I mean, we just need somewhere usually it's easier. And I'm teasing. Mostly, I'm sure Wisconsin is a lovely place. And I don't want to hear from your pupils. So just please don't send me notes telling me. I'm sure it's lovely. Although for my brother's description, it's freezing cold in the winter and sweltering hot in the summer. So that's not a ton of fun for me. Okay, hold on, what is it? We don't know about? Um, the pod five that you wish we knew? Like, what do you want to tell us?
Skiy 58:56
Um, so I really I liked the activity feature. I don't know if you've heard about the activity feature. I do like that a lot. I think it's, it's been beneficial, like when we are when my daughter's playing or she's doing something really excited that she's really excited about and I know, she's gonna have a lot of a lot of activity or excitement and for sugar is probably going to drop, it's, it's really great to just set that. Like when we were on the trial we were we went on a road trip and we were in Tennessee, and we were hiking a mountain. And you know, that activity feature having that on, she didn't go low during the entire hike, which was really great. So I really like that. I think it's really cool. And it goes right back into automated mode. So I don't have to be reminded which is
Scott Benner 59:38
wonderful. Can you set a length of time for
Skiy 59:41
Yeah, so what it does is it it changes your target to 150. And you set the length of time for that. So you one hour two hours, six hours. I don't know what the the max amount of time it can go up to I've never tried that because my daughter's not active for that long. But you know, we we've used it for a variety of different situations and it's it's been really, it's been really great. I really like it.
Scott Benner 1:00:03
Cool. Okay, um, still holds up to 200 units, like the old guys 85, minimum is 85 What else? What else do we need to know? Like? Would you? Would you say that it's a, I mean, I guess you would write it's a big difference between managing without an algorithm for you.
Skiy 1:00:24
A big. Yeah, I don't know what it's like to be on loop I listened to, you know, mostly just from your podcast, conversations regarding loop and I feel like, loop does a really, really, really good job. And I am hoping that people who are going to be moving from loop to the, um, should I say Omnipod. Five, that, that they're not going to be disappointed. Because I think that, you know, there's things that it like the target, for instance, I know, that's going to be a big difference for a lot of people, because I think what you get, you can set your target a lot lower than 110. I, so I, I'm hoping that people aren't going to be disappointed in that. But for me coming from what I what we were, you know, the original Omnipod to this. I, I love it, I think it's great. I'm trying to think of other things I love about it, I love that it's just one device. That's amazing, I cannot tell you how disappointed and how sad I was carrying around those two devices for a month. And I felt like a privileged child, like crying, you know, because oh, I What was me, I have to carry two devices again. But like just having this, this, the cell phone with me is wonderful. So I love that the distance I don't know with Dash, how, like how close you have to be to the child or to the person, whoever, whoever has diabetes, whoever has the pump, how close you have to be in order to dose them. But I know with the original, I would have to be like on top of my daughter. And you know, it was supposed to be a five foot range. And there were times where I had to be like touching her pump pretty much in order to get it to dose. And with this, I've been able like I'm in my room right now my house is small, but I'm in my room right now she's out in the living room doing something I can dose her right now. And it wouldn't be an issue where she can be outside and I can go sir. So the range is really good, which I love.
Scott Benner 1:02:20
Excellent. You know, I want today I'm Arden did like this market research thing for Omni pod when they were making the new PDM, which is now the old PDM. And it worked. We were in an office, it worked like 25 feet away from the pod. And I remember that the F TC is that right? FCC or the FTC, whichever ones in charge of like signals? Made them turn the power down on it.
Skiy 1:02:46
So I did notice on the trial version, it had a much bigger I had a large longer range than the this version. But it's still good. Like it's still really good.
Scott Benner 1:02:58
Good. Yeah. And you don't have to have just so people understand like the the device who you have. You have the PDM. Right. Are they calling it that now? Are they calling it something different?
Skiy 1:03:08
No, it's a PDM. Yeah, it's, it is a PDM and my PDM that I had, when they sent it to me, it actually was defective. So that was the whole thing. They I had to get a new one. And then you know, I get the new one. And then they get the app out. So luckily, I don't have to use use that. But I didn't I don't like the new PDFs that they compared to the well, I guess on the trial, I was using a cell phone. Oh, that was the other thing too. I'm sorry, I'm going everywhere. Now. The the PDF that they provide you with, it doesn't do like your Dexcom. It, it just shows you the graph. When I was on the trial, the Dexcom was built into the app. So everything you did for Dexcom was through the app, which is kind of a bummer, too, because now you have to open up both the the app for the Dexcom if you want to, you know if you're if you're gonna change the Dexcom or do anything with Dexcom, you have to open up the Dexcom app. And if you're gonna do anything with that,
Scott Benner 1:04:05
what would you what would you do with the Dexcom? Because you're bringing up something that I've noticed 1,000,000%, which is we don't even look at the Dexcom app ever anymore. Like it's never I mean, it's open, it's running, but no one looks at it because it her CGM informations in the loop app.
Skiy 1:04:25
I can't turn off alarms and the loop app. Like I was able to do that or not the loop sorry, my dad in the Omnipod find out. I can't turn off the alarms. Like if I get a high alarm or a low alarm. I have to go into the Dexcom app to turn it off. And when I was on the clinical trial, I didn't have to do that because you accessed the app through like you access Dex you access the Dexcom Web Summit. I'm saying we're through the Omnipod app. And now you don't do that we just have this
Scott Benner 1:04:56
graph. What do you mean by turn off the alarm? Do you mean like do do turn on and off alarms very frequently.
Skiy 1:05:03
Like if I get an alert that says she's going high, or an alert that says she's going low, I have to go into the Dexcom to do it. To do what I'm not following you on this, like, you know, where it says, Hey, your, your, your a lot, your high, your blood sugar's high, and you have to hit okay. And if you don't hit okay, then it just keeps telling you. You don't have these issues because your daughter's blood sugar's in better control than mine.
Scott Benner 1:05:23
I'm like, I'm not sure what you're talking about. So Arden's phone has come up as Oh, I think you can go into your eye. In an iPhone, at least, there's different ways that you can get notifications, they can either pop up on your screen and need intervention. Or you can have them just roll up on the top of your screen and then go away on their own. So we don't have ours, ours don't stay around, they go away on their own.
Skiy 1:05:52
Oh, yeah, I don't know. Like, last night, for instance, her sugar kept going to like 133 135. And every time it went off, it would it would make you know, a noise and then I'd have to go into the Dexcom app, and I'd have to hit okay. I didn't pay then. And I can put it on to like, you know, never, never repeat or repeat every hour or whatever. But yeah, I have to hit okay, if
Scott Benner 1:06:17
you don't say okay, it just keeps telling you, like beeping over and over again.
Skiy 1:06:22
Like it'll, it'll go it'll stop and then it'll do it again.
Scott Benner 1:06:26
Are you saying just to make it disappear off the screen like the video representation? No,
Skiy 1:06:30
get it to get like I have her setting up. Never repeat right now. Let's say like I have, if it goes off, it's never repeat. If her if her sugar is still high, that way, it doesn't keep telling me I just, you know, go in and I'll fix it or whatever. But if I if I don't do that, and I just leave the warning on there. I know you're making me feel like I'm crazy. I don't think I'm crazy.
Scott Benner 1:06:51
I don't think you're crazy, but I don't I am definitely not following what you're saying.
Skiy 1:06:57
I don't know what the time different, like every
Scott Benner 1:06:59
five minutes or whatever. Yeah, again, but you know what, but what happens if you don't hit okay?
Skiy 1:07:08
I just keeps chiming. Like after, like, it'll stop and then it'll it'll go beep, beep and then you know, I won't do anything. And then like five minutes or 10 minutes later, it'll go beep beep like, hey, hey, dummy, come in here. Look at me. I'm beeping at you.
Scott Benner 1:07:22
Alright, so once you interact with it, if you think it feels like it knows you're there, and you're aware.
Skiy 1:07:29
Yeah, it's like it needs me to say okay, do it.
Scott Benner 1:07:31
Hmm. Interesting. I've never thought like that once. I could be completely wrong.
Skiy 1:07:38
Do I have like some special Dexcom No, I
Scott Benner 1:07:41
could be completely wrong. I mean, and Arden's. I don't. I don't want people to think Arden's blood sugar never moves around. It's been incredibly stable today, but it'll go up and down. Like we get alarms. You know what I mean? So, I mean, she's a little high right
Skiy 1:07:57
now. It's just more needy than yours. Okay. No,
Scott Benner 1:08:01
I, I'm not following what you're saying. So what I will tell you is that on loop, I think that Ardens Dexcom app becomes almost unnecessary. Like we use it probably, I mean, to swap sensors. And if we ever calibrate, and other than that, I don't ever see it. And she doesn't she never looks at it. If she looks at what her blood sugar is. She looks at Hawaii. Oh, interesting. She looks on the loop app, which on the pod fives app, you can see your blood sugar, right?
Skiy 1:08:32
Yeah, I can see it. Yes. Okay. Or?
Scott Benner 1:08:37
i To be honest, I have a widget on my screen now. For Omni for Dexcom I barely ever see the Dexcom app because the widgets right on the front of my phone every time I open it up. So you have an omni Do you have an iPhone?
Skiy 1:08:52
I do. Yes. i So i on the follow up with my iPhone. But her the phone that I have to use for her is the Samsung Galaxy S 10. Which I just I hate this phone
Scott Benner 1:09:04
isn't her phone. She get a phone?
Skiy 1:09:07
She it's her? It's her device? Yes, this is what we use for her. But I'm not a I'm not an Android person. I'm an AI person. So I don't I don't know anything like I don't know how to I don't know I have to give to my husband and say here set something up because he has an Android.
Scott Benner 1:09:24
I can't wait for them. I can't all these devices. I can't wait for them to cover more cell phones, iPhone, Android everything. And for this to become the norm which it will be one day I just can't wait to get to it because I don't disagree with you like carrying extra devices sucks. Like the one thing that's great about loop is that the loop is an app. So it's right. It's right on Arden's phone. She doesn't have she hasn't carried Arden hasn't carried a PDM and so long, like I'm not 100% sure she would know what it was if I gave it to her. You know,
Skiy 1:09:55
and that's how this is now with this app. You know my daughter can just carry this phone around but yeah
Scott Benner 1:10:00
No, I know. Yeah. But it only works right now on that one phone, right?
Skiy 1:10:04
Yeah, only on this one phone and the the app, they kept asking me like, they would send me a survey and stuff. They asked me questions about if we were using the app or if we're using PDM. And I'm like, we can't use the app, the apps not available. And I was on the phone with with them when my PDM was having failures a few weeks ago, and they kept telling me that they weren't going to release the app on the limited market release. So I'm very, very happy that they change their mind.
Scott Benner 1:10:31
I don't know anything, but I bet you that it just happened sooner than they thought. So they got it together. And they're like, let's do it is what I would guess also on the pod if you're listening, why do I not have on the pod five yet? What is happening right now? You know how much better I would have been on this episode sky if I had this thing?
Skiy 1:10:48
Right. Wouldn't make probably make me look really dumb. Oh,
Scott Benner 1:10:51
no, I'm just saying I would understand things better. And I would sound more together. And you know, we I really?
Skiy 1:10:56
I have a PDM I'm not using if you want to look at it.
Scott Benner 1:11:00
No. Wait, my turn like everybody else. That's fine.
Skiy 1:11:04
Well, you wouldn't be able to use it. I mean, you need the pods. But
Scott Benner 1:11:07
yeah, no, no, I'm supposed to get on the pod five, as soon as I'm not sure I'm supposed to say this. But anyway, my expectation is that I'm getting on the pod five soon after the limited market release is over. But I'm saying Chop chop. You know, I mean?
Skiy 1:11:24
Yeah, absolutely. Yeah, I wonder I'm interested to find out if you're going to be disappointed.
Scott Benner 1:11:31
at all, you want to know what I love. I
Skiy 1:11:33
love love, love, love, love Omnipod. But just from you going from a loop, from a looper to the, you know, this algorithm, I'm just interested to see how it works for you.
Scott Benner 1:11:42
Arden is six months away from going to college. So anything perceived that I'm going to lose about loop I'm going to gain in other ways. One example, on the pod five does not require a linking device between the phone and right. And the and the device is the pump, right? So huge. That's a huge leap for us. So and also, by the way, the Omni pod five talks to the Dexcom directly. You don't even need the PDM to be near for the algorithm to work. No, right? Yeah, you don't, it's great. If you took Arden's phone and chucked it out the window, her loop would stop working. Oh, wow. Right. If you lose the little thing that she's got to carry in her bag, constantly, she's using something called an orange link, this little device that links her, lets her phone, talk to the pod. If that thing if the battery dies, if whatever, she loses the loop. On the pod five comes from a company, it shows up at your house and it works loop has to be set up on a computer and you need to be an app developer to do it. And there's all these other things. What I'm telling you is that one day, that loop apps gonna need to be rebuilt or something like that, and my daughter is going to be away at college. And can you imagine if I got her on the phone, I said, Okay, get out your laptop, open up your developer account like but she'd be like, no, like, I don't know, do any of this. So there's that. Those are my big ones, honestly, like those two things are a big deal for us. Well,
Skiy 1:13:13
those are huge. I mean, those those in itself, you You are right, I I think you're gonna love that
Scott Benner 1:13:18
right now. Do I her target blood sugar on lupus 85. So that, you know, that might be tough to walk away from. But at the same time, I think there's got to be a way to put the settings right where this happens. I keep getting notes from people who are like, Hey, I'm using an algorithm. And I have a constant blood sugar that's under the target range. Like I get a lot of notes like that from people. So I think it's doable. What's I need?
Skiy 1:13:48
That's what I need. I need to be able to accomplish that. I've
Scott Benner 1:13:50
never once got that note from you. But
Skiy 1:13:53
I don't maybe you wouldn't. Maybe I sent it. You didn't look at it.
Scott Benner 1:13:57
But I think I just want to get my hands on to try it. Like if I can find stability for Arden around 100 for the four years she's away at college. Amen. You know what I mean?
Skiy 1:14:09
So when you get it, you are going to contact me and then help me is that what you're saying? Why this
Scott Benner 1:14:15
podcast so everybody can hear it? But I mean, do you want one?
Skiy 1:14:18
Directly? You'll just help me totters numbers, because
Scott Benner 1:14:22
I'm gonna I'm gonna make what you want to really know what I think. What Alright, well, first of all your your episodes going up like tomorrow, like you're gonna have to wait to hear yours. Okay, so um, but what I what I'm going to do is I'm going to make myself proficient at it. And then I'm going to do a Pro Tip series with Jenny about it. Oh, that's great. Yeah, that's all and you know, on it, we'll do as much as we can. Just like we always have been trying to get as much information as we possibly can for oh, if I if there's things
Skiy 1:14:51
that I have questions about, I can email them to you and you can maybe include them in the pro tip. Oh, please.
Scott Benner 1:14:57
I'm going to be looking for questions from people. It's okay good. Yeah, there's no end of this podcast, this is gonna go on forever, don't worry. That's why I stopped eating, you know, like, you know, I get sick or something. I mean, you know, I did eat an egg today and nothing else so far, so I'm probably not gonna live forever. But as long as I can, I'm gonna keep trying to add value into the community for people who use insulin, you know. So that this is one of those things.
Skiy 1:15:24
Did you have any more questions about the? I don't know, I don't even know, trial or anything?
Scott Benner 1:15:29
Well, I mean, it sounds like it went well, it sounds like that it was unobtrusive in your life, which, you know, we should say to people do clinical trials, they help people, you know, it sounds like, it sounds like you're happy with the device. It sounds like you're still trying to get the settings set up. It sounds like there's a lot of ceiling still above you here. But even if you have your settings wrong, and you're not always Pre-Bolus thing, it sounds like you're getting a six, eight a one. See? That's amazing. You
Skiy 1:16:00
already told me it's six, seven cents. Like it clarities estimating six, seven. So I'm thinking it came down a little bit more to even say, I've been on this new system. Yeah,
Scott Benner 1:16:11
I mean, I would tell you just you got to Pre-Bolus It's the biggest part of all of it. It just really is. You know what I mean? Like if you don't want spikes, Pre-Bolus if you know if you want you know, you've probably heard me say it on the podcast before but if you're is going to have a snack and you feel bad about making our weight. You could over Bolus to cover the spike a little bit. You know, I mean,
Skiy 1:16:33
yeah, been I've been doing that. I just I tend to like last night I did that with macaroni and cheese. And it was gluten free mac and cheese because I gluten free. And I she I was just fighting highs. I messed up. I don't know what I did. But yeah, hard
Scott Benner 1:16:50
eye rolls and the fat and the slow digestion. You know, from the fat. So I mean, you just need to know, that just needs a lot of insulin. That's
Skiy 1:17:02
my supplement is I gave her a high dose up front. And then it's like, it's it. It didn't cut and I we Pre-Bolus for it. But then by the time everything kicked in, you know, it was out of her system. Like the insulin, it's like the insulin had already hit. She ended up with a low because I gave her heavy Bolus.
Scott Benner 1:17:24
And then she got hit harder by the fast and the slow digestion later. So yeah, so I mean, you got to Pre-Bolus Then you look at that situation, you say, Okay, I still needed the Pre-Bolus. Not as much of it. I probably need to secondary Bolus with that insulin plus a little more later. Yeah, that would be my guess, learning. I'm
Skiy 1:17:42
trying to learn that. Oh, it's
Scott Benner 1:17:43
interesting to talk to you too, because she's had diabetes for a couple of years. But you've only really been in the fight for a couple years. Like how long has she had it? Versus how long do you feel like you've been? What's the word I want? Like, like, how long has your awareness been higher, that there's more that needed to be done?
Skiy 1:18:00
It really started with the trial. Like that's, that's when I when I started seeing changes and movements and feeling like maybe we were accomplishing something that we weren't accomplishing before, because I felt so stuck. So, like a year and a half ago, but then it really, really really hit me when I started listening to the podcast. Okay, well, yeah, it's like, I can do this, like, I absolutely can do this. I'm glad
Scott Benner 1:18:23
and also to me, then that means the time she had diabetes before that you don't have to Don't feel bad about that. You know, I mean, like, you're just getting into it now. And you're figuring out very quickly, so I get a lot of yelling. Say that again? I'm sorry.
Skiy 1:18:39
I said it feels like we're starting over. Yeah, you know, that's, that's kind of the way I looked at it is, you know, we're obviously in it, we know we have better tools than we did, obviously when we started and my mind is in a lot better place than it was when we started. But we're starting over to try and achieve some goals.
Scott Benner 1:18:56
It's an incredibly incredibly common story. So I wouldn't spend five seconds feeling bad about it I'd feel great about what you're doing. You know, I do feel about it. Good. Excellent. So you're gonna keep using Omnipod five You're not getting away from it.
Skiy 1:19:10
Oh, absolutely not No, I I am like so nervous that I'm very nervous that when it's commercial the commercial release comes out that my insurance like will not cover it I don't know why I'm just like freaking out about it because I can't like I can't get off of this I need this well they cover dash right? They do Yeah, and I'm hoping that because of that but I just you know I don't I don't know what's gonna happen and I just makes me nervous so try
Scott Benner 1:19:35
not to be nervous they say that worry is a waste of imagination. So oh, that's like that. Yeah, just just don't worry about things you don't know to be true that's all that's super easy right? Meanwhile, your your six months after having a baby you're probably still dose to all those like crazy, like mommy hormones and everything right.
Skiy 1:19:56
left in me Believe me.
Scott Benner 1:19:58
Oh, yeah. Hey, You probably are having weird dreams do you think all kinds of crazy stuff is gonna happen to you? Most of my kid is 22. And last week, we were in Florida for baseball thing. And they had a little problem with their transportation, right? Five days after they had problem with their transportation my wife goes to sleep next to me Falls asleep in a split second stirs. And in her sleep says there's not enough space on the bus for the boys. So don't expect any of this to end anytime soon.
Skiy 1:20:30
My husband and I were just having a conversation about this the other night he was making some weird noise in his sleep and I had to hit him in the face. Because he was driving me insane. And I and I I was just making fun of him and he just he just told me like sky you eat Oreos in your sleep. And, you know, I I've been working with dogs for the last 17 years. And he's like, and one time you got that up out of that and you tried to put a dog in a crate on our wall so I don't want to hear it.
Scott Benner 1:20:53
So wait, you get Oreos like real Oreos or fake or?
Skiy 1:20:57
No, I used to actually I used to sleep eat Oreos. It was a problem. It was an actual problem. For crumbs in my bed. thing. It was a real thing. That's amazing. Yeah, I would get mad. I'd be like, where are the Oreos? You know? And it started when I was in high school. My mom would be like, Hey, you came in. You came down and you eat them tonight? Like, what do you mean? Where are they and you punch this guy in the head? I smacked him in the face.
Scott Benner 1:21:23
For the week? No, no, he's
Skiy 1:21:25
he's very loving.
Scott Benner 1:21:27
Not like you know. Okay, well, all you single guys out there. Good luck. Alright.
Skiy 1:21:37
Did you do you have I was wondering, I was prepared in case you're going to ask me about autoimmune in my family, because I know that's the thing that you do.
Scott Benner 1:21:45
Go ahead. Do it. Okay. Well, you hit me in the face, do whatever you want.
Skiy 1:21:53
I have hypothyroidism. I have hash motos. And I haven't, which I don't know that I've ever heard you discuss it the MTHFR gene mutation I have that my daughter has that which is not an autoimmune disease, but it does. It's a gene mutation that can affect it can cause issues with your immune system. And my mother, like we pretty much just have thyroid issues. My husband doesn't have anything that he's aware of. It's the mother effer No,
Scott Benner 1:22:30
it's exactly what it looks like. A mother effer mutation MTHFR gene variant looks like mother effer gene variant. But wow, methyl entra trufa hydro folate read Oh my God, never say that. Just say Mother MTHFR is better. What is it? Oh, it's a rare. Congratulations.
Skiy 1:22:52
No, no. So actually a lot of people have it but they don't they most most medical doctors which go go figure they don't think it's a big a big deal. And the only reason I even know I have it is because I went through IVF and all this infertility issues for eight years. And so I asked to be treated or tested for it because it can cause miscarriages and when I and I have a double copy of it, and I passed it on to my daughter, but what it does is it like your body can't process like synthetic folic acid, you can only process like methylated folate, methylated, B 12 B six, it can't. So you you end up normally with like vitamin D, vitamin b Sorry, deficiency. And you can you can have a homocysteine level like increase which is an amino acid like your, your body normally will get rid of this the homocysteine levels. And if you can't, if your body can't do that, then you can end up with like heart disease, various cancers, stroke, people that have Bipolar in their family anxiety, stuff like that are symptoms of it. And it can cause miscarriages because the clotting factor issue. So I was looking, I've been recently looking at research to see if there's anything that like ties in with it, you know, um, autoimmune diseases and whatnot. So and from what I can tell it, because it can affect your immune system overall, it definitely can play a part in it. And I know like I was reading about I delayed vaccines and whatnot with my son. And there were recommendations if you have like type one diabetes, and the mth FRB mutation in your family, you know, different schedules and stuff for delayed vaccines because of how it how it can affect your body. So yeah, it just something I never had never heard or I haven't heard yet, and it wasn't sure if you had heard of it.
Scott Benner 1:24:44
No. Is there anything you can do for it or take for it or no?
Skiy 1:24:47
So you know, it's funny because I didn't know I had it when I was pregnant with my daughter and I took folic acid the whole time. They tell you, you know take folic acid when you're pregnant, but I really should have been taking fully methylated folate, so you just have to take math deleted, fully like in its purest form, and then the the B vitamins methylated B vitamins and you don't eat, you can't eat anything that is enriched with folic acid. So like enriched rice bread, so I, I stick to a gluten free diet because of that. And my daughter, I don't she has the mutation, but I don't restrict her. She does eat a lot of gluten free things because I eat them. But yeah, mostly you just you, you can't eat those types of process things because your body can't can't process it. Right? Because it's it's synthetic.
Scott Benner 1:25:35
Interesting. I'll have to find out if I can get somebody on who understands it, because that is kind of fascinating. I was looking at it while you were talking. And I would be interested to know more. Nobody else though. Just the hype, the Hashimotos for you, any extended family have anything?
Skiy 1:25:51
No, not that we're aware of. And honestly, like my thyroid levels, it's I love I love all of your thyroid series and tips because my thyroid levels were in what they consider a normal range. The only reason that they were ever tested was I started in fertility treatments when I was going to have my daughter. And they you know that reproductive endocrinologist they test your thyroid? And it was like a four and they were like, oh, no, you can't have you can't be at a four, we need to get you down. You know, we won't we can't do treatments on you if you're this high. But my other doctors said that that was normal. So I wouldn't have been even treated for it had I not been going through fertility treatments. And my, my mom, my mom has, I don't know what her levels are. But my mom has hypothyroid as well. And then I asked to be tested for antibodies for Hashimotos. And, you know, luckily, I've asked for all of these things. So they've been brought to my attention. But had I not asked for any of them, they wouldn't have been
Scott Benner 1:26:47
interesting. Wow. Okay, I appreciate you telling me all this and for sharing all this information about on the pot five and your experience. This has been very cool. I expect to have a lot more conversations with people about stuff like this in the future. I think algorithms are going to be a big part of living with diabetes moving forward, and I'm excited to talk about it more with people. But yeah, I actually Terrific.
Skiy 1:27:11
Thank you, I share more of our Omnipod five journey on my Instagram I try not on my I have like a page that I do for it because my family and friends don't really care. You know, but I like talking about diabetes. So I have like a page that I I share more of our journey on if anyone's interested. What's it called? It's called our wonderful life. But it's wonderful is Oh, any like type one. So it's our wonderful life and I'm on Instagram and I have a Facebook that I do for that which I that's how I had posted about it through there. And I I got I got scolded by Scott on your Facebook. You know, you didn't scold me but you said on there like hey, you know you can't share things from from your pages. So if you want to talk about this, then let's
Scott Benner 1:28:00
Yeah, hold on a second. First, I want to get out your Instagram handle. So what is the
Skiy 1:28:06
at our our sorry, at our wonderful life? So it's our wonderful life. Oh, me. Dr. SQL.
Scott Benner 1:28:14
I'm trying to find it. I'm on the what they call the Instagram are Oh, you are? That's first, right?
Skiy 1:28:22
It's Oh, no, it's Oh, you are? Wait, isn't that
Scott Benner 1:28:27
wonderful?
Skiy 1:28:29
o u r o n e de RF ul li Fe
Scott Benner 1:28:36
I got it. I say o u r o n e d e r f you li Fe right. ul li fe. Okay. Thank you. So that's on Instagram, and back to what happened on the thing. So I have what you might call a popular Facebook page. You do? And And here's one of the problems that comes with having a popular Facebook page. People want to steal your people. So that we end with people okay, yeah. But no, but what seriously happens is you become like, I mean, for me, at least I feel like I have a responsibility, right? So if I start letting people sell things, and they're like, I have a T shirt I want to sell or my Facebook page or this or that. Like, I can't keep on top of all that. And so I can't What do I want to say if I can't be sure that what's being shared is what it purports to be. I wouldn't feel comfortable with it being shared. And because I don't have time to do that. It's just a flat out. It's just it's a flat rule. Like you just can't pimp yourself in there.
Skiy 1:29:51
Oh, no, I Yeah, yeah. Yeah, absolutely. I totally get it.
Scott Benner 1:29:55
I just keep up with it. That's all I am. It
Skiy 1:29:58
amazes me that you are like mediate your Facebook group with 20 Some 1000 members on it. It's incredible. But I was I, it was just funny because when you did that I was like, Oh no, I just like I felt like I was getting scolded by like, my dad or something
Scott Benner 1:30:11
like that at all. got upset, like, I was not upset. I'm just I'm just, I think I'm just pretty matter of fact online and I think that doesn't come off well sometimes. But okay, now I just call you out on it. Oh, no, I appreciate, you know, they seriously like, I can't keep up with it. So I barely moderate that Facebook page. Like, there's really, I mean, here's the secret of my Facebook page. There's no real moderation. Like the real like, like, like, you know, if people are terrible, you know, know, if people are like, you know, my gonorrhea went away when I like, you know, that kind of stuff goes out. They we delete that stuff very quickly, as fast as we can. But people's conversations, I just want them to have their conversations. I just can't let it get. I mean, I guess Think of it this way. Like, if I don't know, if a company selling widgets, their biggest problem after they've made a good widget is how to find people who want to buy widgets. And my Facebook page is so full of people who have diabetes, that they to a nefarious person would look like fish in a barrel. And I do not want them treated that way. And because I can't keep up with it. It's just a flat No, like, it's just the No. And that's just what I do. So and I appreciate you having the conversation there. Because then, I mean, the truth is that having a conversation in that space is going to reach a lot more people than having it in a different space. I think
Skiy 1:31:35
you are 100% Correct. Yeah, I agree with you.
Scott Benner 1:31:38
No, see, I'm right. That's all we needed to say.
Well, let's thank Skye for doing this. And I'm tired. It's so much energy. I just, I just got back from vacation. I'm like, alright, I'll try again, right. Hey, let's thank Skye for coming on the show and sharing her story. I'd also like to thank Contour Next One, that lovely, lovely blood sugar meter that you should be checking out at contour next one.com forward slash juice box. And of course, touched by type one.org. Go sign up for the golfing event. There is literally no time left. I mean, it's like two weeks, but hurry.
Well, the community around this podcast is excellent. So we have a couple of things to share. First of all, Skye did initially try moving up the basil, which didn't work in automated mode, I received a message from a listener who said that on the pod five doesn't look at basil after the first 48 hours of the pod, it starts looking I guess at total insulin use, and it makes decisions on its own. So changing the basil after the pods been on doesn't impact the algorithm, I think is what I'm getting out of that. It would of course work in manual mode. I heard from Skye who said she did in fact try moving up the basil but it didn't work. She also figured out that the setting that the the system was correcting above was set at 130. And she moved it down to 110. I have not heard from her since she did that. Although my expectation is that that would make it more aggressive. And I heard from Kenny, who you know from the fox in the loop house episodes, and he said it Kenny Kenny echoes that the system runs primarily off of total daily insulin. So bolusing manually is the only action that you can take. Meaning changing the settings isn't going to matter after the algorithm decides how much insulin you need. Kenny also said that what he's seeing and other people using this algorithm is that the Basal rate that was set for Skye's child might have been was in line with what he's seeing with other kids of the same weight. So we're all learning together. I just wanted to come back and put this back in because it felt like incomplete information without all this. You know, the nature of having a conversation with the person who's learning something is what you got in the last hour. And then putting it out into the world found us more people with more experience. And so I wanted to add it back in here so it wouldn't be missed by anybody. After I stopped speaking, what you'll hear next is what the original end of the podcast was. I'm just going to add this here at the end on the pod is not a sponsor of the episode. But you know, they do buy ads on the show and I get sponsor links. And so if you'd like to learn more about on the pod five or even let Omnipod know you're interested, it's omnipod.com forward slash juice box five, it's the digit five. So the word juice box one word five. omnipod.com forward slash juicebox. Five, I'd appreciate it if you used my link. That's pretty much it. I don't actually get paid. If you click on the link. They buy ads. I don't want to explain this whole thing to you, but they buy ads, the companies buy ads, I don't get money per click. But you know, if the ads perform well, then they come back next year. And you following my links? I mean, I don't have to explain this. Right. You understand how it works. They buy ads, you click links, if you end up following through on the clicks, that's better. Just clicking on it's good. I mean, for me, by me, I mean, the podcast, and that's how advertising works. Is advertising one on one kids. You know, interestingly, T one D exchange that I spoke about earlier, they don't buy ads. That's actually a thing where I get paid every time you complete the survey. All the rest of the spot. I am so tired tonight for some reason I'm so sorry. All the rest that all the rest advertisers, Dear God, all of the other advertisers are like more, you know, they buy ads, I read their ads or I make them up or you must tell by now they can't be written down. Right? They're like falling out of my head as I'm saying them. Not the point. Really. The point is, they buy ads and you know, if you support the sponsors, then you're supporting the show and they come back next year and you get more content. You understand all this works. Anyway. Really, I'm tired. I wonder why that is. I didn't do much today. Oh god. Oh, sorry. Hmm. I apologize. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Weirdest ending ever to a podcast episode. I stand by that. In fact, if there's a weirder one I don't know what it is. You tell me I'm really sleeping. This can be it Kids Can I guess is it you know, once you get over 50 Everything it happens like this it got tired out of nowhere. Hmm Maybe it's just bedtime? Let's not jump to conclusions. Anyway. If you get another episode if that if episode 651 comes out I'm still alive.
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