#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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#649 Quadoimmune
Christina has four autoimmune diseases.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 649 of the Juicebox Podcast.
Today you'll hear me talk with Christina. Christina has diabetes, Addison's disease, gastroparesis and fibromyalgia. She is one autoimmune disease away from our basketball team, as they would say. Please remember while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. I went away last week with my family and I've rested haven't spoken in this microphone for about nine days. And my voice is feeling very strong. I feel very deep. I have a lot of timber. This will go away this week, as I do five interviews in the next four days. Probably rag myself right back to where my voice is cracking and everything while I'm trying to do the openings for these podcasts. But that's not your problem. It's mine. Let's get to the show, shall we? Oh, you know what I haven't said in a while. Well, in my life, I haven't said in a while but your life I probably just said it yesterday. Now I ran out of music Hold on a second.
If you have type one diabetes, and are a US resident, or you're a US resident, who is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the T one D exchange registry, complete their survey. And just a few minutes later, you will have helped people with type one diabetes. That's it when you fill out the survey. It actually helps people and the podcast benefits. So it's like a two for one deal. You're doing something nice for people. And me, too. I mean, do you one day exchange.org forward slash juice box? Get over there right now. Do your business. I mean, if you listen to Christina, you know, I'm saying listen, right now I've confused myself. Listen to the podcast and go fill out the exchange. Oh, you know what else and then support the sponsors? Click on their links, buy their products, let them know you came from me. This show is sponsored today by the glucagon that my daughter carries. G voc hypo pen. Find out more at G voc glucagon.com. Forward slash juicebox.
Christina 2:35
My name is Christina. I have been a type one diabetic for 15 years. Although I was misdiagnosed for almost 10 years is type two. And I am ready to share my story.
Scott Benner 2:50
I have to tell you that being misdiagnosed for a decade is a long time and I've heard a lot of people misdiagnosed with type two.
Christina 2:58
Yeah, yeah. I found out it's not an unusual story at all. I am technically Lada which has a lot more people are misdiagnosed with type two initially that have a lot of so. But yeah, I was on insulin and the first year had DKA a couple times. I mean, all of the signs were there that this was not a type two. But you know, doctors get it in their head. That what you look like and
Scott Benner 3:28
yeah, yeah, I type to care. I mean, type twos don't go into decay, right?
Christina 3:35
That it's rare. And I even had a doctor that said, Well, this is kind of unusual, but I'm still confident you're type two. And I just was going really I just I didn't know enough. I wasn't really taught anything, initially from diagnosis either. And I just didn't know the right questions to ask. I didn't know to push it. I just thought, Okay, I'm a little bit different than but yeah, I just, I had other friends that were type two. And nothing I was going through ever seem to match what they were going through. But I really and then I actually had a doctor once looked at me and said, well, it doesn't really matter what type you are the treatments the same. Is it No. And I just kind of like, and I believed him. So I really didn't know any better than listen to what I was being told. And honestly, it really just took years for me to finally go something's not right here in to learn what to go in and ask for. So I just finally went in and I said I want to antibody test in a C peptide. And even the doctor was like, I don't think that that's necessary. And I went no, I want it. And I just would not stop saying that until she finally went okay. We'll order it. And then I still remember her calling me up and she had the most cheapest voice where she went. You're right you're not type two.
Scott Benner 4:55
What What led you to believe that that was the case that you were typed that you were a type one.
Christina 5:02
So honestly, that change happened for me, one of the families that I was babysitting for regularly, their son was diagnosed with type one. And that kind of was a game changer as I went through that diagnosis process with them. And finally started learning a lot more about type one in the differences through experiencing that with them. And that finally led me to start Googling more myself and trying to learn more about the differences. And that's when I first read about Lata and I went, Oh, that seems to fit me a whole lot more than type two. And so that really was the start of the change for me was just learning how to treat his type one, and realizing there was a lot more similar similarities to his diabetes than I had ever met with any type two.
Scott Benner 5:53
What so tell me a little bit about lotta because I, I freely admit that I don't know that I could describe it properly, What's your understanding?
Christina 6:04
So, essentially, first of all, it's a latent autoimmune diabetes in adults. So I did test positive for two of the antibodies, although not for Dad, which was kind of interesting. But two of the other ones, I tested positive for the antibodies, and then I've had a very slow loss of my insulin production. So whereas most type ones, usually within the first year, lose all of their insulin production. Mine was really slow. So I honeymooned actually, for close to 11 to 12 years. And I do actually credit some of that to being on insulin pretty early. So as I was on insulin, in that first year, that helped protect my pancreas and didn't have to work so hard. And that.
Scott Benner 7:02
Christina, you're gone. So you blanked out for a second, your pancreas didn't have to work so hard.
Christina 7:10
My pancreas didn't have to work quite so hard. And that helps protects the beta cells that you have left from being stressed. So you can prolong your your honeymoon by using really long with LADA by using it by and by using insulin. And I did actually have it in chronologist, early on, that put me on a 730 split insulin. And that worked really well for years for me. And he still at the time, though, was thinking I was type two. So he wasn't perfect. But he did find the right combination of insulin to kind of help take the stress off of my pancreas because I was still producing some of my own at that time. And yeah, so
Scott Benner 7:59
the question about that. So you're you're living for 10 years with a misdiagnosis. Looking back now, because that you know, you've lived five years with a diagnosis. Looking back now, what were the personal harms to you? Like, of the mistake?
Christina 8:15
Yeah. So when I was diagnosed as type two initially. And honestly, that was just an assumption that was kind of accidentally discovered in the ER, although I had been sick for months, and the doctors hadn't been able to figure out what's going on. I mean, I had a lot of the classic signs of diabetes. And they just never thought to do a finger prick. So I just happened and they came in and they're like, are you diabetic? And I went, well, not that I know. But something's not been right for a while. And they're like, well, your blood sugar's like 350. And I, that was like a fasting blood sugar because I hadn't been keeping food down. So that was interesting. But so I met, I mean, they just sent me home from the ER and they just said, Well, you need to follow up with your doctor, because you might be diabetic. And then the doctor just said, the typical put me on Metformin gave me a meter to test a couple times a day. Well, that first three months, I did everything exactly what I was told to do. I changed my diet. I took my meds I checked my blood sugar. And I went in for my three month checkup. And my a one C really had not moved all that much. I still was getting to hundreds and three hundreds regularly on my meter. And the doctor just said, Well, you're not doing good enough. You need to do better. And to me, that was basically motivation killer. I went, oh my goodness, I have been killing myself to get these numbers under control. Now I was only testing like two or three times a day. So because that's all I was told to test. So I didn't realize that I hadn't really even gotten that much better. But essentially at that point, I gave up. It just went Why am I killing myself to get this better? To have very little improvement? And I? Yeah, I basically went, Okay, well, I've already tried my hardest, and I didn't do any better. So I give up. Why am I doing working so hard? If it's not going to get me any better to my gold and my, my doctors just gonna still tell me I'm not doing well enough,
Scott Benner 10:22
though there was no real difference between the effort and then on effort. Right, right. Right,
Christina 10:26
exactly. I think my agency came down like one point, it came from, like 12 to 11, or something like that. I mean, it was very little improvement. So honestly, I am an all or nothing kind of person. And I put all my heart into it for no real improvement. So I went back and pretended I wasn't a diabetic anymore. I did still take the Metformin. But I went back to my old diet, I just really was like, Okay, if there's no difference, then why am I working so hard? And that lasted for about three or four years where I just, that's where I ended up going into DK a couple of times, because I really wasn't trying and even once I put on, but was put on insulin. I was only half heartedly taking it. I wasn't being consistent. I wasn't. I wasn't even often testing before I took insulin. I mean, I just was, well kind of take it to say that I kind of tried, but, and then. Yeah, it just really was a mood killer for me. So I really was like, why am I trying so hard. And I would go through periods of time where I'd kind of try again a little bit. And nothing just really seemed to work. I was not getting my agency anywhere near where I supposed to. And I had the doctors that were using the scare tactics of you need to do this. So you're going to kill your kidneys, you're going to lose a foot foot, and I just went. But I've tried doing everything you said. And it didn't work. So I guess this is just my life.
Scott Benner 11:56
Can I ask you when you first of all, how old are you at this point?
Christina 12:01
I am not 42. You are now you're 42. So I was 27.
Scott Benner 12:05
So you're in your late 20s ish. And so when you tell them, Look, I'm trying as hard as I can. And they're saying do better. They don't offer any change in change and no tactics, or it's just no, you're not trying hard enough. So do you think their assumption was that you weren't even doing the things they told you to do?
Christina 12:25
Oh, yeah, I had a doctor that looked right at me. And I said, I am trying. He's like, I don't believe you. And I went, Okay, well. Yeah. So I mean, I would, I would kind of go through like a month or two, where I really would kind of resolve, okay, I'm going to try again. And again, I would not see really any effort, and I still would go in and get yelled at again. And so it really the second time I was in DKA, I did have a doctor that finally really got my attention. He looked at me and he said, If you don't change what you're doing, you are going to be in kidney kidney failure are dead in a year. He's like, you cannot keep having blood sugar's this high. And he's like, You came really close again this time. And he was the first one that looked at me. And he said, I know how hard this is. I know how impossible this feels. But you have got to find a way to get this under control, or you are not going to survive this.
Scott Benner 13:25
Did that doctor offer any ideas? No,
Christina 13:28
no, no concrete advice. But
Scott Benner 13:32
he was really worried while he wasn't helping you.
Christina 13:35
Yeah, so I finally decided I couldn't change. I couldn't do this all or nothing. So I made it my goal every month, I was gonna reduce one bad habit. So for me, the first thing was no more soda. No more sugary drinks. No, but like, I just was like, okay, I can do one thing. I can do one thing. And so I just got into the mindset. That's also about the time that I did get the endocrinologist that finally got me on the 7030 split insulin that seemed to work a lot better than within what we had been trying. And I just thought, Okay, I'm going to tackle one bad habit at a time rather than just trying to totally change everything at once. And that works a lot better for me. Once I got one bad habit out of the way, then I could work on another one and with his endocrinologist help, and getting on the right combination of insulin, I finally started to get better. I mean, I still never had an a one seed under maybe seven and a half. But I at least got out of the double digit a onesies for the first time. And when I got down to about 7.5, I usually was an upper sevens during that point. I thought, okay, they're not yelling at me anymore. They're not telling me. I'm a diabetic and so Yeah, but it became more of a change one habit at a time because trying to change everything at once. Really, I just couldn't sustain it. It was overwhelming. I just
Scott Benner 15:12
what are some of the other things that you that you change besides the soda?
Christina 15:17
I did that and then I tackled, okay. Really be consistent on my insulin. Take it when I'm supposed to test my blood sugar when I'm supposed to do other than I kind of know how I feel. I really find that got support for getting enough strips to test as often as I should be testing, which for me, I although they still had me on the test before you eat and test two hours after kind of standard test, when you get up in the morning, test before you go to bed at night. I got an A, they really wanted me on a more regimented eating schedule where you eat at these times, and you take this much insulin, which I still wasn't taught carb counting, I still wasn't taught some of the things that I really should have still been doing but and I was taught to do corrections. So I wasn't letting myself if I was too high after a meal. Although it was a little bit difficult in the 7030 split, I and then I kind of learned my meals, okay, this is how much insulin I need for this meal. So I wasn't necessarily taught carb counting, but sometimes some meals I knew would hit me a little harder. And I would take a little bit of extra even that was a little bit more than I was told this was to take it that meal so and a lot of it was really getting the diet under control. I definitely had a sugar addiction going into this diabetes and was not eating a very healthy diet. So it was more of switching out high carb foods for lower carb foods. And I wasn't striving for perfection anymore either. Like I got into the mindset of I can't stand the thought of never drinking soda again. So I'll drink one once a year. And then I'm like, I will have one day a year will eventually one soda because for me the thought of never having it again, was unthinkable. So I started doing that with other foods to other favorites. Right? Yo, okay, I'm not going to tell myself, I'm never going to eat this again. But I'm going to save it for you know, birthdays or celebrations. You know, holidays. And that worked. I could I could not eat it. Knowing that I would have a time coming up again a few months where I would get to enjoy it again.
Scott Benner 17:36
Can I ask you? Maybe this is not related, but what part of the part of the country do you live in?
Christina 17:45
I've lived in a lot of places. So did you grow up? I grew up in Southern California. Interesting. Okay. So that's not where I am now. And that's not where I was when I was diagnosed. But yeah, so
Scott Benner 18:00
I just asked because I mean, I think so does one of those things that is just universally understood. Right? Like, we all know, that's not good for you. And yeah, and yeah, I wondered where you grew up that that it was, you know, such a big part. Oh, I
Christina 18:19
didn't I didn't grow up on it. That was definitely an adult breaking free. Get to do what I want.
Scott Benner 18:27
Okay, no,
Christina 18:29
I, I Yeah. I mean, it was something that was a special treat as a kid and I loved it. And I always want to drink a bit. It just honestly, for me as an adult, it was my source of caffeine. I wasn't a big coffee drinker. And it really was what I use to sustain my energy during the day. And honestly, I, I didn't gain weight. I didn't I mean, there really didn't seem to be any immediate consequence to it. I knew it wasn't the greatest for me, but there was no immediate consequences at the time. So I yeah, I kind of used it thinking, Well, if it ever starts to cause problem, then I'll stop. kind of mindset.
Scott Benner 19:13
So are you think you were addicted to the caffeine or the sugar?
Christina 19:17
Oh, yeah, it was. It? Definitely. I mean, I definitely. I actually had a job at the time. I was working about 60 hours a week and most of my food is coming from the drive thru or the freezer because I just, yeah, working long hours and I and I was working as a nanny with young kids and anyone knows that's exhausting. So the last thing you come home and want to do is make them make healthy food. So I mean, I just I was living on fast food and freezer meals and stuff that was not good for being a diabetic. So it was it was a major life change for me to get diagnosed. But again, that first three months I knocked myself out I went I I, I really put my heart into changing my diet. I switched to diet soda, which, in itself, and I just ended up giving it up because that didn't end up being the greatest either. But yeah, I mean, I just I really I, I got my I was actually making meals, making an effort trying to make things from scratch, at least trying healthier alternatives. And then I got my agency back and they're like, you're not doing enough. Like, I don't know how I could do any better. Like,
Scott Benner 20:37
what? What's my question here? So how long does that go on for like, like, how many years? Are you in a double digit a one see
Christina 20:46
that I was actually trying to go back and calculate that was about my first four years. Okay. Wow. And then that's when I had kind of the dka again, where the doctor really got my attention and said, Hey, you can't keep living like this. You're gonna kill your kidneys, you're gonna kill your health. You're you. I can't guarantee you're going to survive the next day. Okay. And I just went, okay. You're, I mean, that was the first time where it really scared me how close I really when I went into that. I felt like I was dying that time.
Scott Benner 21:19
But you, but you're still been treated as a type two, and you believe you have type two diabetes?
Christina 21:24
Oh, yeah. Oh, yeah. Oh, yeah. They, they keep telling me? Oh, no, you're type two. And I just went, Okay, it must be really different from the other type twos. I know. And so yeah, and honestly, what
Scott Benner 21:38
do you what do you do next time when it when it ramps up? When you have that, that next DK? And you're like, Okay, I'm gonna try harder, whatever that means, like, what does that end up? Meaning like, is it
Christina 21:49
again, changing my diet, getting my eating habits and my really terrible eating habits under control, taking my insulin, consistently, testing my blood sugar when they, you know, when they've told me that I'm supposed to be testing? And, yeah, just really the two big things, were getting my diet under control and taking my insulin consistently. Even when I didn't feel like it even when I didn't want to tell myself No, this was what I need to take it. Honestly, I had never been one that like needles before. And the thought of having to deal with needles every day for the rest of my life was something also really just emotionally hard for me to deal with because I didn't like it. And I kept getting told, I kept getting told you get used to it, you'll get used to it, which on the one hand is kind of true. But on the other hand, I didn't like it any better. I think it didn't help me start liking,
Scott Benner 22:48
waiting for someone to come on here and how much they like needles. It hasn't happened so far.
Christina 22:53
Yeah, so I just, I just went, Okay, this is what I have to do. And I have to accept that this is just going to be part of my life now. And I can't keep telling myself, I don't feel like doing this.
Scott Benner 23:06
So so let me fill this in here. So latent autoimmune diabetes in adults are a lotta is a disorder in which despite the presence of isolette antibodies at diagnosis of diabetes, the progression of autoimmune B cell failure is slow. Yeah, so here it says, it could be at least the first six months, but it sounds like you were getting help for a while, like long.
Christina 23:32
Yeah, because I wasn't being a good diabetic, they put me on insulin pretty quickly. Because the oral medications alone weren't helping. Now again, then for that first four years, I was not consistently taking the insulin. But I've actually no other people that have lasted as long as I did, by and it seems like early Insulin is the key to support your pancreas because it's trying to make more and more and more insulin to address the high blood sugars. And that just puts a lot of stress. So by supporting my own pancreas, insulin production that seemed to be able to preserve my beta cells, a really long time I've heard I've actually heard two to 10 years is the average for people with LADA for how long the honeymoon.
Scott Benner 24:27
It's sad, though. When you talk about it, when you say I know you're tongue in cheek, I can hear it when you're like, you know, because I wasn't a good diabetic. They gave me insulin. But yeah, but the real sentence there should be because I was misdiagnosed as the type. Right. Right. And I didn't. And they figured it out. Right. They gave me
Christina 24:46
the right that would have been the better, better you had
Scott Benner 24:49
there happen eventually for the wrong reasons.
Christina 24:52
Exactly. Exactly. So they were just trying to get my blood sugar's down and it wasn't working. Just the orals so they thought well then like we guess we need to give you some insulin. So yeah, I mean I'm I'm pretty much completely insulin dependent at this point and just have a very different life now then
Scott Benner 25:15
we'll do they do they treat you now? Like do you have a your proper diagnosis now are you a type one are you lotta
Christina 25:25
so on paper, there is no diagnosis for Lada. So I'm on paper now type one. So that was almost five years ago. And what that eventually meant for me though, was, once my diagnosis was changed on paper from type one to type two, I suddenly qualified for an insulin pump. And then I qualified for a CGM. So I was able to get tools that I didn't have access to as a type two, that suddenly was no problem once they were able to change the diagnosis on from type one that opened a whole new world. And then that caused me to go get involved in the type one community and suddenly meet people that was like, Oh, my goodness, your diabetes is exactly like mine. So that just also, and then there was a lot of guilt that I couldn't, with diet and exercise, get off the insulin, that suddenly was gone, that I really felt guilty. Still, as a type two being on insulin, I felt like that still was a failure somehow. Because even once I got my diet under control, and everything, I tried, actually a few times to wean off the insulin, and I couldn't. And that made me feel like and I mean, I actually was able, at one point to lose a bunch of weight. And I tried to get off the insulin, and I couldn't. And that made me feel like there I was doing something wrong. Because why can't I? I mean, I was still being told, Oh, yeah, if you get this under control, you should be able to, you know, get off your insulin. And when I couldn't do it, I kept feeling like, there was something I was doing wrong. So there was a big emotional shift, also getting correctly diagnosed as type one, right? That went, Okay, this is, this is not my fault.
Scott Benner 27:16
But no one. No one Christina, no one ever said to you, if you do this, by using these tools, or taking the steps, it was just like if you would just do this better or differently, but with no context of what that meant. There was never context.
Christina 27:36
No. And actually, I had an inner chronologist. Were right about the time where I decided I was going to push for the type one diagnosis, my agency started going up just for no random reason. And I had my a one C go from like a 7.5 to an 8.9 and a three month period of time. Now it just did happen to be over the Thanksgiving Christmas time. But I was still being a very discipline eater. But I asked my endocrinologist I said, so my Wednesday is going up, what should we do? And he's like, Well, you probably ate more sweets over the holiday than you thought you did. And I said, No, I didn't. I still I said I had maybe on the actual thanksgiving on the actual Christmas. Yes, I had some treats. But I said, I my regular diet, the rest of the, you know, rest of the normal days. And he went, Well, you still must be eating more than you thought you did. And I went, listen, he didn't he didn't increase my insulin. He they just said you probably ate more than you thought he did.
Scott Benner 28:39
He should have to do a podcast because you can ask leading questions like that you're not supposed to say I assume this is what you think sometimes I do it too. But I mean, but not the health situation in the health situation
Christina 28:50
that I went. And that was my final straw where I went, Okay, something's not right here. Because I did not Well, I really think it's just my insulin, my own insulin production went down. And we needed to have my insulin again. So but he just he has literally looked at that increase of a winsy and told me Well, you must have been eating more sweets over the holidays than you thought you did. And I just went, that was my final straw where I went, something's not right here because I know I didn't do that. And my agency what for no apparent reason. So start
Scott Benner 29:25
to figure stuff out for yourself then. Right? So
Christina 29:27
that's when I went okay, I really don't think I'm type two anymore. And I learned Okay, what do I have to ask for? So I actually never went back to the endocrinologist again. I call it my insurance and what who else can I go to? Because that was the most ridiculous answer I have ever heard. To explain you what my agency without for no apparent reason. So
Scott Benner 29:45
you must have done this. I didn't write well, you must have but I did. Yeah. I will stop talking about it now. That's exactly
Christina 29:52
exactly so I went to a brand new endocrinologist and I walked in and I went I went to see peptide antibody panel and again she also looked at me With Oh, I'm pretty confident you're type two
Scott Benner 30:04
for five seconds. Yeah,
Christina 30:06
exactly, exactly. She looked over my records. I got 10 for my other Endo. And she went no, no, I'm pretty confident you're type two and honestly, yes. Have I always been a little overweight? Yes. But I just went, I just kept saying it over and over and over again until she went, okay. We'll order it. I don't think we need to. But while we're at
Scott Benner 30:28
it, she comes back to you and says, Oh, yeah, you have type one. Exactly. Or whatever.
Christina 30:33
Yeah, she's like your, your your see peptides really low. And yeah. Your antibodies are positive.
Scott Benner 30:40
So did that. Did that? Start with Hey, Christina, I want to apologize. You were no,
Christina 30:44
nope, nope. No apology. She just went. She just went, hey, you know, some interesting results.
Scott Benner 30:52
You seem to understand with the internet and everything and and oh, by the way, all your personal experiences for the last, you know, decade. Yeah. That that nobody's been listening to you about any sense of relief? Or did you feel like you
Christina 31:08
Oh, I so hard. I so badly wanted to say I told you. So. I really had to refrain myself from saying I told you so to
Scott Benner 31:19
her to call the other doctors to write
Christina 31:23
I actually wanted to go back to every doctor that I had ever seen. told me your life to go, Oh, my goodness, look at this if you had just. And when I researched how to find out what type you are and realize how simple of a blood test it was. I wanted to go back to every doctor and go, Why? Why could you not just order this simple test? To find out like, I just I wanted to go back and go look how easy it was?
Scott Benner 31:51
How many of those doctors were male versus female? Did you see any difference? Like that kind of like, you know how sometimes you're seen first kind of undervalue women sometimes the first
Christina 32:06
endocrinologist I saw after diagnosis was a woman. And I actually really kind of liked her. But then she went on maternity leave and never came back. All of the rest were male, until this one I switched to that I really pushed for the testing. And she wasn't going to listen to me either. So I I don't know. I ended up being with her for quite a few years. She was one of those she gave me everything I asked for, but didn't ever really offer any help. So I kept going her because she gave me everything I asked for. But she didn't ever really teach me anything or give me any guidance. So But then, the insurance I was on at the time, there were very few to choose from. And honestly, she was better than the guy that told me that I must have just eight more than I thought I did. So
Scott Benner 33:00
you're making me feel like, you know how we always say that the American healthcare system, we always want to fix a problem after it happens. But we don't want to do anything to prevent it. But I don't know if it's true that we don't want to or if it's possible that most doctors don't have the first foggiest idea of how to accomplish that. You know me like the idea of getting ahead of a problem being thoughtful, instead of just it because because everything you've said, makes me feel like their job is just to go, oh, you this concrete thing is happening. And this is what we do for that concrete thing. And that's it, I get I say the thing I'm supposed to say. And whether it helps you or not doesn't matter, because I've said it and that's my job.
Christina 33:44
Yeah, yeah, I don't know that I've really felt that I can do much to change doctors at this point. But honestly, every person that I hear that's gotten diagnosed with diabetes, I tell them go in and ask for an antibody panel and a C peptide. I'm like, even if you think you're probably type two, basket escort, you know, just there's no harm and I'm running that just to make sure. And I've had a few others that I've heard of like friends of friends that were that were admitted with DK and still told the type two and I went oh my goodness, please tell your friend ask for this testing because yeah, that's really unusual. And honestly, I did have a doctor looked at me once and he went adults don't get type one. Perfect. That was his answer to me. And again at the time, I believed him because I didn't know any different. And I asked him why doesn't Why doesn't my type two, like my other friends with type two? And so I just it didn't ever sit right with me. But I didn't know enough and I didn't and I really just was taught to trust with the doctors knew what they were talking about. And so I just accepted it because I really didn't know any better back in those early years. And but the things now that I got told I just thought my goodness I couldn't I cringed that they're still telling people that so oh they definitely Yeah, exactly. I hear it's too all the time. Oh my goodness, I don't know what we can do at this point.
Scott Benner 35:12
I think sometimes it's luck of the draw. You just get a good one or you don't.
Christina 35:16
Yeah, yeah, I just So honestly, I really feel like my story is brought me to the point now that I'm able to help others avoid what I went through. So I just turn around and try to use it to help others not end up in the same situation that I was being misdiagnosed and really have them push for that. That scene to confirm it. So um, yeah,
Scott Benner 35:39
yeah, well, it's got to try to get back a little bit and right if you can keep somebody from having the same problem you had. So once you find out and you get your pump and all that stuff happening, is there an immediate transformation or does it take you some time to figure it out?
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I'm going to get back to Christina in just a moment. But first I need to tell you about a few things about the podcast here they are in no particular order. Ready. If you're looking for the diabetes Pro Tip series, they begin at Episode 210, your podcast player and they're also available at Juicebox. Podcast calm and diabetes pro tip calm. At those same links. You can find the defining diabetes series, the variable series, the how we eat series, the afterdark series, there's so many to choose from. All of the episodes of the show are available in the audio app of your choice. And at Juicebox Podcast comm you'll find links to the sponsors like Chivo Kibo penne from just a moment ago and touched by type one and the Contour Next One blood glucose meter and the Dexcom and the Omni pod. And pretty soon the endpin. And soon after, that might be something else. You never know. Go check out the website Juicebox Podcast calm. There's an entire series of episodes about algorithm based pumping. Trust me, listen now, because if you want those algorithm pumps, they're here and coming on the pods is out tandems out Medtronic, we're all going to be pumping with the algorithm one day, you should understand what that's all about. Don't you think? Don't you know, in my mind, I'm doing it Wisconsin accent coming out of my mouth. I just sound like an idiot. couple last things. The Facebook page, the private Facebook group Juicebox Podcast type one diabetes, I believe it has about 23,000 members in it. Now it's an absolutely wonderful place to learn more about using insulin, diabetes, and so much more. If you're enjoying the podcast, please share it with a friend. That really is the best way to support the show. If you're listening right now, on your phone, in a podcast app, or any kind of audio player really like Amazon music, let me think Spotify, Apple podcast anywhere. If you're listening to those apps, and you're not following or subscribed, would you please have subscribed for me, please, that'd be nice, subscribe or follow whatever your app supports. I don't know. And if you're listening online, you should get an app for your phone. It's way easier. I'm not telling you what to do. I'm just telling you, it definitely be here. Unless you like your life is specifically set up or you're listening on. Like my website. And if you are, I mean it's cool. Just saying apps are great. You should try them. Alright, let me get you back to Christina. Now there's a lot more to her story.
Christina 39:29
When I got my insulin pump, I'm very much learn everything I can about something new. So my agencies I hadn't done ever better than maybe a 7.5 when I was on injections. And once I got my pump, the highest agency that I had on my insulin pump was 6.2
Scott Benner 39:50
privato and you were injecting was that still were you doing regular an MPH
Christina 39:55
when I got the official type one diagnosis and my agency had gone up into the 80s. That was the point that we determined that 7030 Split just wasn't working goodness anymore, because my insulin production had dropped too low. So that was the point that we went ahead and switch to Basal and long acting. I had an interesting problem, though, that I have side effects pretty much to every single Basal insulin known to mankind. So that is a another reason why we were able to get my insurance to cover a pump, because I just Yeah, I actually for a while there went back to just doing long or just doing came along only and injecting pretty much every
Scott Benner 40:36
two hour like level mirror Lantis.
Christina 40:39
Yeah, tradeo bit just, well, the worst one that was weight gain, I would put on as much as five pounds a week, no change in diet, no change and exercise, the only difference was being on the Basal insulin. But I had significant problems sleeping, like it really messed with my sleep cycle and my ability to get even if I took it in the morning, I still wouldn't be able to get to sleep at night. But I had other really weird ones like hot flashes, low back pain. And I go off of it again for two weeks, and all the side effects would go away. And then we try another one. And I'd have all this, but but really that, wouldn't I switch back to Basal insulin, I gained 30 pounds. And about three months there just from trying to be on a Basal insulin. As long as I'm just on homologue I don't gain weight. But
Scott Benner 41:35
when you move to a pump, and so you're only using homologue did you lose weight, do like magically
Christina 41:41
I didn't lose weight. But my endo did say I was the first person she ever put on a pump that didn't gain weight in the first three months. She's most people suddenly have so much freedom to eat whatever they want on the pump, but they gain weight. But I really was disciplined in my eating already and really didn't see that changing moving to a pump. So she just congratulated me that I didn't gain weight on the pump. She's like, seriously, pretty much every one of my patients gains weight when they first go onto a pump, because they can suddenly eat as much as they want. And so she just thought it was impressive that I didn't gain weight. When I started on the pump
Scott Benner 42:17
during that weight gain time. Do you think do you think that you were taking in more calories than you were prior?
Christina 42:23
Nope. I was doing my same meals. Same carb amounts. Same calories. Yeah, I mean, I was doing everything exactly the same as I had been doing on the 7030 split insulin, and yet I was gaining weight every week. So I've online now met maybe three or four other people that had the exact same experience that seems to be a little rare, but and the fact it was it was with other side effects too. So yeah, I I don't know my eyes. It's my body just really does not seem to like the Basal insolence. And we did try. I mean, there was even some other lesser known ones that she tried me on and crazy. She just went she just went okay, I guess you're just weird here. So, yes, I'm like, don't touch my human log. It works. I don't have side effects on it. And I'm scared to try anything else. After my experience. I'm like, don't mess with me. He will log. It works
Scott Benner 43:23
really? Well. Can I ask you, you said in your in your note when you when you signed up to be on the show? You have Addison's disease as well.
Christina 43:33
So yeah, that's initially what we came on to talk about. So. Yeah. So in on April 18, I actually had been having side effects since July of last year. The first thing that happened? Well, I had a really bad flare up of gastroparesis in July, I actually gotten hospitalized with that. And once that kind of cleared my appetite never came back. Like I just was never hungry. And through that, I started really gaining losing weight. But my thought was, well, of course I'm losing weight. I'm not really eating. And honestly, who's gonna complain about losing weight? I mean, that was just like, Oh, great. I can take some of these extra pounds off again. And when I was working with my GI doctor, we really were just assuming I was losing weight because I wasn't really eating. Honestly, I would go the whole entire day. And unless I had some sort of reminder, I would just completely forget to eat. I had no appetite. The other thing that started is I started getting really, really bad muscle cramps at night. They just I would wake up three, four or five times a night with like charley horse bad cramps in my legs. I did eventually find like some supplements with magnesium and stuff that got them a little bit better. They never completely went away. And I talked to my doctor about it. They're like, well, we can't find anything wrong. So you're just going to have to live with them. So that was the next sign that something just wasn't quite right. But again, they're like, well, we can't find anything wrong. So you're just gonna have to live with it. I do also have fibromyalgia and they're like, Well, maybe it's just a new symptom of your fibromyalgia. And I thought, Well, okay, maybe,
Scott Benner 45:19
Christina, let's back for one second here. Yeah. You said a lot of things. Yeah. By the way, I mean this in a good way, because we're on a podcast, but you're chattier than I am. So I know. So get right. Is the is diabetes, your first diagnosis?
Christina 45:38
Yes, that was my very first years ago.
Scott Benner 45:41
When do we hear gastroparesis?
Christina 45:43
That developed kind of mid my first year, but they also told me that that was because I wasn't getting my agency under control.
Scott Benner 45:52
The bad persists to this day.
Christina 45:55
It does. Most of the time, I can go pretty long without a flare up. Stress really seems to be a flare up for me and I was having some stress at that time. I did We did also figure out there's a medication that I had started last summer that was upsetting my stomach. So that really i i if I'm if I'm control, I can usually control it with diets and keeping good blood sugar under control. I usually need a couple of triggers to go into a flare up of the gastroparesis. But yeah, there just was a perfect storm that happened that week that really flared up bad. And I could I could not keep it down at all. So I ended up having to be admitted because I was not keeping food down at all. So yeah, and then again, we got it back under control, but I just never my appetite never came back. So and then other things I look back now that I didn't necessarily attributed the time. Weird symptoms, like I started startling really easily. Which sounds like a really weird thing. But even if I knew something, someone was coming into the room, they still would startle me when they actually came in. I mean, it just fly woodland next to me and I and it was not just like a quick startle. It was like I felt like my heart stopped, took a couple minutes to recover, kind of startle reflex. And I thought that was really weird. And then the fatigue, I started just getting really, really, really tired. I always felt like I had no energy. But I just kept thinking, Okay, well, I just, I'm a kind of person that if they can't figure out, I'm just gonna keep functioning the best I can. But all of this came to a head in April. I am a regular house sitter. So I was on a house city job. It was a three week long job. And it was a little more involved than usual. It was horses and chickens and, and dogs and everything. And it was for three weeks. And I was really not feeling good during those weeks, which and I just people kept asking me, Are you sick? And I'm like, Well, I don't know, really. I'm just really tired. I'm like, but I'm not. I don't have any other symptoms of being sick. So we get to the last night of the house sitting job, and it was a Sunday. And I even made the really unusual decision not to go to church that morning because I just was like, I am so tired. Oh, the other thing that happened is I started sleeping like 12 hours a night during those last couple months, which was very unusual for me, but I just I could not ever feel rested. I just I would fall asleep at the drop of a hat. And so I got up fed the horses, chickens went back to bed and I slept till like 130 That day, which is so unusual. But I just was really really really tired. And I got up finally because I'm like I've got to get up not because I felt like I was still rested, but was just kind of like Hey, it's 130 I should get up and at least try to be a human today. And I when I ate when I hadn't ate when I got up, it was a low carb maybe like 20 carb meal. I took my insulin and I went low, which I thought was a little bit odd. But I ended up staying low like in the 50s for like two hours. I think by the time it was over, I'd gone through probably 120 130 carbs. I had a friend My friend that's on my Dexcom that just kept texting me going Why aren't you coming back up and I'm like, I don't know. I said I just it's just just been a stubborn low they happen sometimes you know, but I just kept eating and I had planned since it was the last night of my house sitting to celebrate by ordering my favorite dinner from my favorite restaurant which for me is a big treat, I've done it. I've done it at least a dozen times before knew how much my insulin was for it. So kind of, I don't know, after eating all of those carbs while I was still hungry, I still can't figure that out. Because that wasn't typical, but I already had it in my mind, I'm gonna order my favorite dinner tonight to celebrate the last night on this job and making through it. So ordered the meal. And because I'd had the persistent low, I did make the decision not to Pre-Bolus the meal, I thought, you know, because of this afternoon, I am going to just go ahead and eat and then wait to watch for my blood sugar to start going up. And then I'll go ahead and dose for this meal. But it was about an 80 carb meal, so more than I usually eat in a meal.
But around the time I started to see the blood sugar once it hit about 150 I thought okay, I'm going to go ahead and Bolus for my meal, did my normal Bolus and then I went outside to feed the animals because it was about that time that to feed the horses and everything again. So I had my phone out with me, but when out seemed normal first feeding horses when I got the chickens, I suddenly had this feeling something was not right. Like I suddenly felt like I was about to pass out. Like the symptoms of the low came on so fast. I can't even describe one second, I was fine. And the next second, I was like something is not right pulled out my phone looked at my Dexcom I think I appreciate the Dexcom still says something like 90, but it had like two double arrows down. And I went, oh my goodness, something. And my first thought was I don't have my blood glucose meter with me, I don't have any low treats with me, I have nothing. I don't have anything out with me out here. And I'm always from the house, like I'm out with the animals. And so my first thought was, I'd actually ridden my bike down. And I thought, Should I try riding my bike? Back? Should I just try to walk it back? Like my first thought is I need to, or should I just stop and call for help right from here. And as I'm quickly making decisions in my mind, my thought is I've got to get to my meter and see how low I am. Like, I need to know how bad this is. And I need to get to some sugar. So I made the very quick decision to hop on my bike ride back up to the house. I don't know how I managed to do that got up, pulled my meter out. And I was 36. Which I've actually been in the 20s a couple of times and still conscious. So my first logical thought is oh, 36 isn't that bad, I can still get ahead of this, I quickly down a couple, you know, applesauce pouches. And I'm not a gut feeling kind of person. I'm a very logical look at the data and my mind screaming at me, this isn't really that low. This isn't really that bad. But I could not overcome this gut feeling that something was really, really wrong. And I still was struggling to stay conscious. And I'm out here in the middle of nowhere by myself. And I still cannot even tell you why. But I called 911. I just went, something's not right here. Something doesn't feel right. And I just had this overwhelming gut feeling. I need help. So I quickly sent a text to my friend who's like on my Dexcom share with a screenshot of the 36 blood sugar. And I said I'm calling 911. So I don't actually remember all that much about calling 911. I don't really remember I think she quickly responded and said, how were you? I think I quickly screenshotted the address to her to where I was called 911. I remember the you know, the masking for the address. I had it, I remember the mask for my phone number. And by the time they asked for my phone number, I could not get my phone number to come out. Like I can't hear myself that I wasn't saying it right. But I kept trying and I could not get it to come out of my mouth, right? And she finally read it back from the screen. And I said yes, that's it. And then she just said, What's wrong with my blood sugar's low, something's wrong. I don't really remember much past that. I don't remember the paramedics showing up. I don't remember. I mean, I lost consciousness somewhere in there. And so I've heard the story back later, the paramedics got there in a reasonable amount of time. They started with the glucose gel in my mouth. And I think I came up a couple points and then dropped right back down to the low 30s. Apparently, at that point that was around the time that my friend showed up. And she they at first weren't gonna let her in the house. They're like family only. And then she pulled up the Dexcom on her phone and said, Look, I'm her medical person. And they're like, oh, okay, she's like, look, I've got her number right on my screen here. But she also told me later she was not going to let them not let her like she She was coming in whether they wanted to or not, but she came in and the first thing she's like, she was able to tell the paramedics No, this has never happened before, she has never had to call for help before. And they suddenly started taking it a little more seriously, at that point, when she was able to tell them that no, she has never been low like this before. I've lost consciousness. And, but apparently, they started, like, looking around the kitchen, they found a bottle of Powerade that they were able to get me to drink.
You know, and again, I came up, maybe like 510 points, and then dropped right back down again. So at that point, apparently, they tried to find in some cookies that they tried to get maybe I don't know that I cooperated very well. But again, I would come up a little bit. And then I was dropping right back down again. And I was not regaining consciousness. And at that point, they admitted to her they'd never seen anything like this before. And one of the EMTs actually admitted he had never had anyone not respond to the glucose gel in the mouth. So at that point, I guess they called the hospital kind of to say, what else do we do? Like we've never seen this before, where she's not regaining consciousness and her blood sugar was just keep dropping right back down. So they were advised to set up an IV and start dextrose. So from what I heard later, it took the third injection of dextrose. For me to finally start coming back to consciousness. Do
Scott Benner 56:30
you think this was gastroparesis?
Christina 56:33
No. I will actually explain in a moment what this ended up being so. So
Scott Benner 56:39
Christina, you're on a break or anything like that, like, I went off when I make these? You're okay, we're good. We're good. I make these podcasts. And I'll later do a transcript of it. And I think it's gonna say, yeah, you spoke for 90% of the time, because I keep I keep thinking of questions. And then you keep answering that I'm like, I, she needs me. So. Alright, it's okay. Keep going.
Christina 57:03
Um, I'll I remember when I first started coming to me, I immediately started dry heaving. And the first thing I said was, did you give me glucagon? And the guy went, No, but we have pumped you through so much sugar through you that that's probably why you're nauseous. But so they gave me some Zofran. And that kind of stopped me that from the dry heaving, but I just, I was absolutely soaked in sweat. Like, I felt like I had had a bucket of water thrown on me. I just remember feeling really kind of out of it still kind of what's going on? I didn't realize until the next day, I was unconscious for nearly an hour.
Scott Benner 57:46
Wow. Holy crap. Really?
Christina 57:48
Yes. Yes. I didn't realize. I mean, to me, it felt like maybe five minutes. But I mean, at the 45 Minute point, my friend really, she was convinced I was gonna die. She really at that point did not think they were going to bring me back because they were doing everything they do to do and I would not come back to consciousness. And she said, you know, she says, really, by the time they got to 45 minutes, she's like, and I saw on their face, how perplexed they were that they could not get you back to consciousness. So it was decided they did decide to go ahead and transport me. I was in the mindset that I'm like, I don't know, do I need to go to the hospital. I'm conscious now and my friend was assisted they need to try they need to know what happened. They you need to go get checked out to find out why you dropped so low. At the time, I was still on the Medtronic pump that's under a recall. So there was some will maybe your pump malfunction questions going around? So yeah, I went to the ER and honestly, they did all kinds of checking out they couldn't find any real alarms of anything explained this. We checked it from a pump that really didn't seem like it malfunction. The crazy thing, and I actually questioned the ER doctor this week ended up having my pump completely off for over four hours, and my blood sugar hadn't budged above 100. And I even asked the doctor, how is my Basal been off for so long? And I haven't gone up anywhere. I don't know. He's like, so anyway, long story short, they had me do a follow up with my primary care doctor. And as I relayed the story to him, the first thing he said is you were in a cortisol crash. And I went what he's like, I think you have a sense. And he started asking questions he's like that would explain the weight loss that would explain the muscle spasms you're having that would explain this blood sugar crash you had. So essentially, when you have Addison's, your adrenals no longer make the hormone cortisol. Cortisol is really important, especially to type one diabetics because without cortisol your liver doesn't break down your food for sugar and doesn't not release the sugar into your bloodstream. So, the reason I've crashed earlier at lunch I didn't crash is bad because it was only 20 carbs. Whereas this one was 80 carbs. So I took a lot more insulin for the dinner. But essentially, the process that your body needs to break down, your in release sugar into your bloodstream stops when you don't have cortisol. Now of all things they tested at the hospital, they didn't test my cortisol level, which a really good ER doctor should have tested that and saw that my cortisol was probably at zero. And should have clued them in that that was actually the issue that was happening. So until we got all the testing done, and I started on medication that next two weeks, I was only taking about 25% of my normal insulin, both Basal and mealtime, because, yeah, unfortunately, I really pushed them to admit me and get it done. And they wouldn't go for that. So they made me wait to go through all the testing as an outpatient, which took close to two weeks, which I really was frustrated with. But they're like, as long as your blood pressure is not dropping, your stable. So just try not to stress yourself. So that's its particular effect on title and also the treatment for Addison's is steroids. So if your steroid levels are right, it doesn't actually make your blood sugar go up, it just brings it back to what it normally would be without the steroids because of the because of the Addison's because it's basically just replacing the cortisol that you're no longer making. But there is no way at home to test your cortisol level. So it's basically a guessing game. Because your cortisol levels fluctuate throughout the day. And they also fluctuate based on how stressed you are and how active you are. So I tend to, in particular, be a person with the way my job is right now I have days I'm in the office that I'm really active. And I have days at home where I basically sit the whole day. So my cortisol needs are different on those days. And it's still a guessing game, to try to guess how much I need to take based on how active I am that day. So And what's really interesting is now if I have a low blood sugar, I have to stop and ask myself, Is this low blood sugar because of too much insulin? Or is this a low blood sugar? Because I don't have enough cortisol? How do you know?
There's some subtle differences in how they feel. It's a little bit of trial and error. Sometimes it's situational going, Oh, I haven't had a dose of hydrocortisone in four hours. So this is your five hours. So it's probably wearing off, I probably need a little more. I will start getting muscle cramping when my cortisol is going too low. So obviously, if my blood sugar's low, and I'm also getting some muscle cramps, then it's a cortisol issue. I can't really fully put it into words, but they do feel slightly different. And I am off
Scott Benner 1:03:08
the back though, like in a crisis. Is there something you can do?
Christina 1:03:14
I'm on oral steroids. So I take a dose of steroids, and I treat the low. Okay. So I eat some carbs, and I take a dose of cortisol of the steroids that will then bring my cortisol level back up to where it needs to
Scott Benner 1:03:27
be oral steroids are a consistent constant for you every day.
Christina 1:03:32
Yes, I cannot go even one day without steroids. If you don't have enough cortisol, your body shuts down and dies. So without the oral steroids, I can die within a matter of hours. It's also if I were to be in a car accident or something like that I now have to wear ID that says I have Addison's because if they don't give me an immediate dose of steroids, I can quickly die from not because normally a normal person if you're in an accident, you're you suddenly your body will like triple how much cortisol it's making. But since my adrenals can no longer make cortisol, I need to know and what's really interesting, so about a month after diagnosis, I actually broke my ankle. So I got to experience stress dosing, you have to take about twice your normal amount of steroids when you have an injury or illness. Because your body needs more cortisol to help your body heal from the injury. And so I already got to experience the up dosing and the increased steroids needs needed after that, so it just, if you think type one is hard to begin with, when you add something like Addison's in it just becomes that much More complicated to decide, okay? Is this an Addison's issue? Or is this a insulin issue? What's really interesting, so I don't get adrenaline rises anymore. either. I don't get angry, you know, if I'm, if I'm excited about something, my blood sugar doesn't go up anymore because there's not the natural cortisol release that other people would get. So it's really in a lot of ways civilian like, knowing my having to learn my diabetes all over again, too. And honestly, I had somebody else suggest this. They it would be so much easier for life if they would make a cortisol meter for home where we could test our cortisol and because honestly, it's a still a guessing game. You get symptoms. If you have too much. You get symptoms, if you have too little.
Scott Benner 1:05:56
How do you get too much? Do you just scare yourself?
Christina 1:05:59
No, you just have to wait for it to well, you could get up and try to move around more and try to get your body to absorb it more. But most the time, it's just wait, wait it out.
Scott Benner 1:06:11
I've been looking while you're talking. I mean, Addison's is a rare disease, like fewer, fewer than two is fewer than 200,000. Americans have it. That's yeah, that's why you're not getting a meter
Christina 1:06:22
as right. But as type one diabetics, we are 10 times more likely to develop Addison's than the general public.
Scott Benner 1:06:29
Oh, so a fair amount of that 200,000 has type one you're saying?
Christina 1:06:33
So there is actually a group on Facebook of people who have type one and Addison's. And from my experience talking to people, whichever one they got second is the one they most would like to get rid of. So if they had Addison's first and then got type one, they hate the type one more than the other sense. Interesting. If they had the type one first and then got Addison's. They hit the Addison's part because it
Scott Benner 1:06:58
is autoimmune.
Christina 1:07:01
It is yes. It's pretty much on the same autoimmune spectrum as type one and thyroid one because it's the endocrine system.
Scott Benner 1:07:09
I was gonna ask, do you have thyroid disease? Actually, I
Christina 1:07:12
don't. That seems to be one of the few ones few diseases I have quite a few autoimmune issues at this point. I somehow still managed to avoid thyroid.
Scott Benner 1:07:23
What about the anything you can do for that? Um,
Christina 1:07:31
I do have a muscle relaxant medication I can take if it gets really bad, but it also makes you really drowsy. So you can't really function while you're taking it. So I do I actually do take it at night to kind of because I can't otherwise get my muscles to relax enough to sleep at night. Usually. I do take a muscle relaxant at bedtime.
Scott Benner 1:07:49
Does the weed help? Ever try that? Oh,
Christina 1:07:53
you know, I, I actually tried. I tried the CBD oil. I didn't find that that actually did.
Scott Benner 1:08:01
So that might be a marketing scam. But I mean, like, yeah,
Christina 1:08:05
I, I, I want to try to be able to function somewhat. So I don't want to do the actual hard stuff. But yeah, it is. It is what it is. I'm mostly able to function again, stress is a really big trigger that will make it worse. So I do also just try to avoid is I mean, it's not it's not possible to always avoid stress in your life, but I do my best I do. I do water aerobics twice a week. That really does seem to help with the fibromyalgia because it's low impact muscle. Exercise, but yeah, low impact movement. So yeah, but this Addison's has been. And honestly, I still am in the period of time where we're still trying to find the right combination of steroids. That's going to work best. I would say I'm maybe 50% Better than I was at diagnosis, but I still am not back to where I was before all of the symptoms started a year ago. I still tend to sleep more than I used to. Yeah, energies i I am fully addicted to caffeine again, right now. It's kind of
Scott Benner 1:09:21
you get headaches or is there anything?
Christina 1:09:25
Like I'm not necessarily from the from the Addison's, I do tend to still want to err on the side of not having quite enough because for me, the symptoms of having too much is worse. What are those? So yeah, I get all jittery. And I can't sleep. If I've gotten too much before bedtime. It's like not going to sleep pretty much. I mean, I kind of will go in and out of sleep but it's an I'm aware of the time the whole night kind of sleep. And there's really nothing you can do but just try to let it work its way out of your system. So Yeah, it's but I just I just, I can't fully explain it. It's just really annoying having too much in your system. It's just a very jittery, and I just I feel like I can't think straight.
Scott Benner 1:10:13
How about your extended family? Is there any autoimmune stuff going on with those people?
Christina 1:10:18
I do have one sister with some autoimmune issues. It's no, no diabetes, really. I've had a few older relatives to get type two since since my diagnosis, but no type one that we're aware of. There has I've had, I've had grandparents and aunts and uncles with auto immune issues as well. So there does seem to be some precedent for the auto immune. There seems to be a few people in each generation that just seems to get all of it.
Scott Benner 1:10:50
And I and your family like it? My
Unknown Speaker 1:10:52
family line is I look back. Yeah, kid gets the full. Yeah,
Christina 1:10:57
yeah. So like, my grandpa seems to be the one of have in his family. That was the one that got autoimmune stuff. And have my mom, my mom's one of six kids. And a couple of them have seemed to get some of that I mean, stuff. And then there's six kids in my family, too. And two of us have seemed to be the ones that have gotten to more of that.
Scott Benner 1:11:16
Do you have any children?
Christina 1:11:18
I don't. Okay, I don't. A lot of kids that I'm an honorary aunt to, but none of my own. So
Scott Benner 1:11:27
with all this present problems, if you wanted to.
Christina 1:11:35
I still have held out some hope of maybe still having some children, obviously, at 42. I'm starting to run out of time, and I've just really wanted to try to get my health stable, and it just doesn't seem to want to stabilize. So I can't seem to go more than a couple of years without a new diagnosis. So I've kind of accepted at this point, it's probably not going to happen. I still would consider adoption at some point. But yeah, it's, it's more of what I've been able to physically handle the stress of it. And I don't know at this point that I'd want to put my body through.
Scott Benner 1:12:14
Yeah, what my like, yeah, it's just, you're gonna adopt, like a 16 year old 15. Glam for a couple of months, then move them right along to college. I'm fit. And I'm exhausted. So I don't know.
Christina 1:12:28
What's interesting is I would consider taking a type one child two that needed a home. So I read I feel like at this point, and I will have to say, Scott that I only started finally listening to your podcast earlier this year. But what's really funny is I recommended I've recommended to other people for at least the last year, some some reason I got it in incorrectly in my mind that it was mostly an adult parenting type one
Scott Benner 1:12:55
thing, I don't see it as leaning towards either to be honest, right?
Christina 1:12:58
Well, I know that now. But before I listened to it, I really thought it was just for parents of type ones, I can understand that. So but then somebody on Instagram posted the quick start, listen to guide. And I finally went okay, but I still think I thought I was listening. So I could tell other parents of type ones about it. I wasn't starting to listen thinking it had anything to do with me. But then also, I wouldn't really have considered myself struggling. Because I kind of, I got to know my own diabetes really well. And I am more of a logically analytical mind that kind of person. So I was able to see Oh, my Basal used to be just a little bit here, kind of things. And I could look at my graphs and kind of probably understand that a little bit better than some people but I will have to say, my best day when see before the podcast was about 5.8. And since the podcast, it's now been 5.4.
Scott Benner 1:13:59
I like this part of the Congo. When I get accolades.
Christina 1:14:02
I would say the two big things that I learned from the podcasts that I was not doing as I stopped staring at high blood sugar's waiting for hours for them to respond before I did something else. Because that was a rule that I had learned that I just stuck with. And I really upped my game a little bit more on the Pre-Bolus scene. I I kind of sorta would maybe do a five or 10 minute but I had meals I knew I needed the walker pole Pre-Bolus and was just a little too lazy. And I've really kind of upped my game on getting that better of knowing my Pre-Bolus times for my different meals.
Scott Benner 1:14:40
Yeah, that's amazing. I saved your life. Basically. I'm just
Christina 1:14:44
and honestly I do just love hearing the stories
Scott Benner 1:14:46
of others. Something that this morning. I listened to an episode this morning. Now I know that sounds odd to people or not. I've recorded it. I put it through an Edit process. You know, I added ads to it. I uploaded it online. And then I thought I went, there was something I wanted to listen to something this morning. And the other things that I listened to didn't have new content. And I thought, I'm going to listen to Susan, like, there's an episode that just went up with an older woman who has type one and multiple myeloma. And I just remembered it being a really good conversation. And I was like, I'm gonna listen to it as I was listening. I thought this has as much to do with diabetes as it doesn't. It does the to do about life. And, you know, even like, I think your conversations Tell us a little more about attitude and, and perspective. Yeah, things like that, you know?
Christina 1:15:43
Yeah, well, I will have to say some lessons I've learned through this. First of all, if you were even thinking you should call 911. Call 911. I mean, seriously, even as I was calling in the back of my mind, I thought, by the time this show up, the sugar I just ate, it's gonna kick in, I'm gonna be fine. I'm going to be all embarrassed that I called them. But literally, the paramedic told me on the way to the hospital, if I had not called when I did, I would have died. They would not have found me in time. By the time the Dexcom finally caught up, and my friend realized there was a problem. I would have, I would have been probably seizing by that point. And
Scott Benner 1:16:19
they would have been you bouncing above that seizing line. Right? Exactly.
Christina 1:16:23
They were only just keeping me right above 30. Like, they were not getting me to come back up. And I mean, he said later, if they calculated it was someone somewhere close to probably the equivalent of 200 carbs. Yeah, that it took to finally just get me to come up above 40. So
Scott Benner 1:16:42
that's even more, even if you were conscious. That's even more than you would have thought.
Christina 1:16:46
Oh, yeah. Oh, yeah. He's like, he's like, No, but the fact that I was unconscious by the time they got there, like if I had even delayed a few more minutes trying to deal with it myself, I probably would have passed out before I got enough information to the 911. It's funny, that's
Scott Benner 1:17:01
a very common thing. Because a very long time ago, I was having a pendant. My appendix was getting ready to rupture, right. I was home alone with my son. He was a bait like still in diapers. And he's 21. Now. So it's a long time ago. And I remember thinking, I will just go to bed, I'll feel better in the morning. And I thought, well, I'll get him ready for bed. I'll put him to bed. And then I'm going to get in bed. And I Kelly was away. She was in a work trip. And actually, we were supposed to get up in the morning and fly to where she was, which is a longer part of the story not important to this part. So I'm like, I'll be fine. Like, I'll wake up in the morning this, this will be gone. And I take him into his room. And I tried to lift him up to put him on the changing table. And I almost like just dropped it my bear. I basically throw him up there before I lost control them. I collapsed on the floor. I picked the phone up, I call 911. And the pain kind of passes, and I hang up. And so then I get I get myself up and I'm messing with his diaper and the phone rings. And I answered it and the woman's like, this is 911 Did you call 911? And I said I did. But then I decided I didn't need it. And she goes, That's not usually how 911 works. Okay, what's wrong? And I started explaining it to her and she's like, I'm sending an ambulance. Yeah, I was like, I think I'm gonna be okay. And she's like, No. Well, thank you. And I was having emergency surgery like six hours later. So yeah, no,
Christina 1:18:30
I. And so that's one lesson if you even in the back of your mind thinking you'd rather be embarrassed than dead. So if it's even crossing your mind, maybe I should call 911 Call 911 Yeah, Dead people don't Yeah, yeah, yeah. And the second thing that I've learned through this is you can do everything right. You can be the best diabetic there is. And something like this can happen. But if it's still not the time that God decided for you to go, you're not gonna die. I mean, I still cannot explain why I called 911 or what even put that thought in my mind. But I really just come back to it as it was not my time and things worked out. And so not that I ever had a really big fear of lows before but this has given me even a little bit more peace that I'm not going to stress about avoiding every possible disaster. Because all I can do is my best and all I can ask of myself as my best and but I'd have to definitely reminded myself to listen to those gut feelings a little bit more.
Scott Benner 1:19:41
That I'm sorry to cut you off. Sorry. No,
Christina 1:19:44
I basically have been through every diabetics worst nightmare. And I'm still here.
Scott Benner 1:19:50
I all I was gonna say is that I think it's for a person who doesn't have like autoimmune diseases or, you know, especially type one Everybody just feels like I don't know, like, death doesn't seem like a real thing to most people, right? Like, that's yeah, it's the end of your life. It feels like a eternity from now. And so you never live with that feeling of that something bad could happen until you really know that something bad could happen. And then it's almost a little liberating. Yeah, you know what I mean? Like a little bit, like, okay, so whatever, like, I guess anything might happen. And it's like, instead of feeling like, like, there's a magic to it, where, you know, everybody gets I mean, honestly, if you ask any person, when do they think they're gonna die? Everybody's like, oh, probably my, like, 80s or 90s. You know, like, go ahead and look at actuarial tables. That's right, when we all die, you know, like, so. You just get that feeling of it's gonna be okay, I'm gonna be alright. And I don't mean that you have the opposite feeling. I mean, that. I would think you would have some sort of, like I said, just clarity about it. But yeah, yeah.
Christina 1:21:05
Yeah, I mean, I've definitely had my days where I've gone. Oh, my goodness, I'm so tired of dealing with this. Why didn't I just die that night and be done with this? I mean, I can't. I have to admit that's crossed my mind a couple times. And I go, but no, honestly, I'm still here for a reason. And I still got purpose here. And honestly, statistics say that there's a very good chance there's at least one person that's listening to this that's develop the symptoms of Addison's and hadn't hasn't even been diagnosed yet, because, honestly, most people stories that I've heard, they have almost died before finally getting diagnosed. It's one of those rare diseases that doctors just aren't good at looking for. And people, it's not the first thing that's going to come to their mind. So I just tell people, if you think there's even a chance you can have this. The standard test that they start with is a morning cortisol test. But I actually also know from experience my own experience, you, you can actually continue to pass the morning cortisol test, and not have enough cortisol through the end of the rest of the day. So I've told people if it comes back normal and you still are suspicious of a cortisol issue, ask for a 24 hour cortisol collection test
Scott Benner 1:22:16
was anything we have to pay anything like all day? Yes, it is. Yeah, it
Christina 1:22:19
is. But that is really the best way to determine if you're making enough cortisol because it's slowly dies out. I actually can point back to a surgery I had three years ago, where my blood pressure kept crashing after surgery. And I actually think in hindsight that I was already starting to struggle with making a court was all back then interesting. Because I can point back to situations of stress like that, where I was having weird symptoms. That I think now we're actually because in those times of stress, I wasn't able to make enough even if I was had enough for most days. Yeah, Harris was already it was already on decline. But yeah, it's been since July of I mean, I lost 50 pounds between July of last year in April,
Scott Benner 1:23:04
Jesus. That's a lot.
Christina 1:23:07
I mean, there was, and yet the doctors kept saying, we're not we can't find anything wrong. So
Scott Benner 1:23:13
are you losing weight like that? And you're not trying you got to be like, Nah, something's wrong. Right? Did you think you had cancer? Well, they
Christina 1:23:19
kept saying, Well, what are you eating? I'm like, Well, yeah, I kind of not really eating.
Scott Benner 1:23:23
I don't eat much. Oh, okay. I would have thought I had cancer. Just so you know, I would have been like, that's definitely what's happening.
Christina 1:23:29
My GI doctor kept trying to find ways to get me to talk, you know, to eat more, thinking that that's why I was continuing to lose weight. But seriously, I had days where I had maybe a salad and that's all I had the whole day. Yeah, I mean, I would do maybe a protein shake here and there. But I mean, I just I was not hungry. And honestly, I loved that I was losing weight without trying. So lack
Scott Benner 1:23:53
of hunger is a to do with the Addison's. Yes. When you don't
Christina 1:23:57
have cortisol to break down your food for energy, the natural response of your body is to just not be hungry, because it's not doing anything with the food. But that's also why you get so incredibly fatigued and start sleeping so much because you're not getting any energy from your food or because even when you eat, I don't know exactly where the food is going when it's not being broken down. I don't completely understand that process.
Scott Benner 1:24:22
Were you able to force yourself to eat when you weren't hungry?
Christina 1:24:26
To a certain point? Yeah, I mean, there was times. Yeah, I mean, I occasionally would still stop and get my favorite meal, which was encouragement to eat but even when I ate I still was losing weight. So I just Yeah, but I just food had no appeal to me. I just, I wasn't in the mood to every anything like usually when you're hungry, you like have something you are thinking about. Oh, I didn't do eating that. There just wasn't ever that feeling of, Oh, I could really go for it. Good, you know burger right now, or, Hey, I'd love a piece of chocolate right? There just wasn't ever any of those thoughts or feelings about your food had no interest to me. So
Scott Benner 1:25:10
any specific food over another or no? Like was Nope. Nothing like
Christina 1:25:14
no, just just no interest in eating. Yeah, I can't really explain it other than food had no appeal. And so I just And honestly, half the time, it's just I didn't even think about eating. I'd get to nighttime and go, Oh, my goodness, I haven't even eaten all day. And it just because I wasn't hungry. I didn't ever think about it. And yeah, it just it was weird. And in hindsight, it makes so sense. I really should have been paying closer attention thinking, Okay, this is not normal. And pushing a little bit harder to Yeah. Okay, figure this out something. But yeah, I don't know, I, I deal with a lot of health stuff. And in a lot of ways, I'm used to just pushing through no matter how I feel. And I just kind of gotten that mindset again.
Scott Benner 1:26:07
It's hard to look, it's it's hard to even want to look deeper. Sometimes like you're like, Oh, God, there's
Christina 1:26:12
exactly, it's like, well, and here's other interesting things that I've realized now. So the Starlene that's because your stress response is not working properly. So your over your over, your body can't properly respond to stimuli, because without the cortisol, which is why I was struggling so bad, but there was other random things like my fingernails were breaking all the time, which I thought was kind of odd. But that ended up being a cortisol issue. I mean, there's just was really random things that I figured out after I got on the medication going, Oh, is that why that was happening?
Scott Benner 1:26:44
I want to thank you for sharing this with me. Because if any of this stuff ever happens to people I know, I'm gonna know immediately from all of your stories. So yeah, I'm gonna I'm gonna turn into the auto immune Dr. House if I keep doing this much long. Well, you're, you're startling. Oddly, I know what that is.
Christina 1:27:03
But the really classic ones are the loss of appetite, the weight loss, and the tiredness. I mean, the fatigue was at levels I have never experienced before. And I had people that would just look at me go and you know, look at it. And I'm like, Yeah, I am really tired. And I mean, I just I just was dragging through life, and it was noticeable to other people. And so those are considered the classic symptoms of Addison's.
Scott Benner 1:27:36
And I appreciate I really want to thank you so much for doing this and for reaching out, and it's definitely not a topic that a lot of people have have spoken to me about. So I'm really happy to add this to the podcast. I appreciate it very much.
Christina 1:27:49
Yeah, well, I'm just I want people to be able to learn from what I've been through if I can get anyone to avoid almost dying like I did. That that's a win and honestly, it's, it's there's there's many people that think that there are people that have died from Addison's without ever knowing they died from Madison's because it's not something they necessarily test for post mortem, either. Oh, I see. So, yeah, I mean, there's they assume there's actually probably diabetics that have died from a low low blood sugar that probably had something extra going on like this and didn't know it. I mean, if I had died that night, I don't think anyone ever would have known. Yeah, that would have I don't think they would have just assumed I died from a low blood sugar. I don't think anyone ever would have realized that I have out of sight out Addison's so. Yeah.
Scott Benner 1:28:42
Yeah, that that's a an interesting way to end because I it didn't occur to me either. That
Christina 1:28:48
yeah, no, I realized if I had died that night, they would have just put it down that I died from a little bro trigger, they wouldn't have ever gone and looked into anything else. Yeah,
Scott Benner 1:28:55
that makes sense. Okay. I, again, I really appreciate you doing this. I want to thank you very much.
Christina 1:29:01
I appreciate you having me. I I really just want people to be aware and especially type ones. They do say if you read online that the average age for Addison's diagnosis is between 30 and 50. But there are parents in our group on Facebook who have children who have both type one and Addison's. So it really can happen at any age.
Scott Benner 1:29:21
What's that Facebook group called?
Unknown Speaker 1:29:24
A
Christina 1:29:26
I think it's pretty simple, but I can it's pretty stupid name for I think it's a pretty simple stupid name of Yeah, it's type type one diabetes, type one diabetes, and Addison's disease is the name of the group. So yeah, it's pretty easy to find.
Scott Benner 1:29:45
Okay. I just want to I want to just say here so that
Christina 1:29:49
Yeah, yeah. And I do talk pretty regularly on my Instagram about living with Addison's and type one. So
Scott Benner 1:29:57
what's your what's your Instagram? Hey,
Christina 1:30:01
Korea CRI A underscore t Wendy night. So yeah, I also bring awareness there of what it's like living with Hypponen. Edison's I appreciate it. So cool. But yes, I really appreciate the podcast and I share it with others as much as I can of how much I've even learned since listening to it and going you're right, why am I still following these rules? I know myself better than Well, now, why am I why am I staring at this high blood sugar? I know after an hour if it hasn't budged. It's
Scott Benner 1:30:32
not going to. Now that you know that the podcast is for everybody. It's easy to is it easier to share it now? Do you ever get to share it with adults?
Christina 1:30:41
I do. But I haven't been able to convince anyone to listen yet. So maybe when when I tell them to come listen to mine, maybe last year this realize they need to start listening to the other show.
Scott Benner 1:30:50
Well, if they're here, now you listen to Christina she she's talking about.
Christina 1:30:55
So yeah, I'm like, I really wish that I had this a diagnosis, I would have been so much better off
Scott Benner 1:31:01
of so right. Christina, a guy that doesn't have diabetes is gonna talk to you about diabetes. Well, exactly.
Christina 1:31:07
Exactly. And some of the, some of your concepts do sound really radical, like, do they really, but honestly, they Well, compared to what the doctors are saying to do. Yeah, I mean, they sound dangerous, almost to someone who doesn't know better. But again, you know, your own diabetes better than your doctor does. Right? Yeah. And yeah, so
Scott Benner 1:31:27
I completely understand when people would type one, especially adults who have had it for a long time wouldn't be interested in listening to the podcast, like I guess, I there's enough people listening now that I know that a lot of you would like it. So you should hang around, which
Christina 1:31:42
again, as you said, I wouldn't have considered myself struggling. I mean, I had good a wind seeds. And I felt like I knew what I was doing. So I didn't necessarily feel a great need to go learn more. But I did learn more. And I do really enjoy hearing the stories of other people sharing.
Scott Benner 1:32:00
I share that. So if anybody's here just to listen to Christina, you should go check out what do you think the pro tip episodes or just listen to some other stories or something like that?
Christina 1:32:08
I would say message me. And I'll actually I will say when this goes up all for a few days on Instagram posts, the ones that I would say to go start
Scott Benner 1:32:16
listening to Oh, could you thank you very much.
Christina 1:32:19
I appreciate it. Follow me on Instagram and I will make sure that I share. Here's my favorite one.
Scott Benner 1:32:23
Christina, you sly little social media pimp liquid. I'm not gonna give it all away here, Scott. They got to come find me.
Christina 1:32:32
I don't have a ready list in front of me. And I'm going to feel like a bit of forget one. And I'm a perfectionist. So I want to make sure that I have a ready list.
Scott Benner 1:32:41
I gotta go. I have to go get my eyebrows waxed. She's getting hurt. Or not. Well, she does threading. Oh, my god. I can't believe I said waxing. She does threading and she's getting her senior portraits done tomorrow. So I am in charge of taking her to that right now. But thank you very much for doing this with me.
Christina 1:32:57
Oh, you're welcome. Thank you for having me.
Scott Benner 1:33:08
A huge thank you to one of today's sponsors. G voc glucagon. Find out more about Chivo Kibo pen at G folk glucagon.com Ford slash juice box. You spell that? GVOKEGL you see ag o n.com. Forward slash juicebox. It's been a long episode. I'm not gonna hit you with too much here at the end. Just all the rest. Find the Facebook page. Take the T one D exchange survey support the sponsors. Share the podcast with a friend. If you're listening in a podcast app, please subscribe and follow. And if you're not listening to an app, come on. It's 2020 to get yourself an audio app. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
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The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
#648 Defining Diabetes: Insulin On Board
Scott and Jenny Smith define diabetes terms
In this Defining Diabetes episode, Scott and Jenny explain Insulin On Board
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio - Radio Public or their favorite podcast app.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 648 of the Juicebox Podcast.
Today I come to you with another in the defining diabetes series. Today Jenny Smith and I are going to define insulin on board the notorious I O B. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. This show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash juicebox. If you're a US citizen who has type one diabetes or is the caregiver of someone with type one, please go to T one D exchange.org Ford slash juicebox. Join the T one D exchange registry fill out the survey support people with type one diabetes T one D exchange.org Ford slash juicebox.
G voc hypo penne has no visible needle, and it's the first premixed autoinjector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is G voc hypo pen simple to administer, but it's simple to learn more about all you have to do is go to G voc glucagon.com Ford slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk.
Jennifer Smith, CDE 2:04
Insulin on board is an interesting topic it is
Scott Benner 2:08
and I think it's going to become more interesting as more people use algorithms to Yeah, because you're going to start thinking about it a little differently. But insulin on board is a measurement. I'm making air quotes about how much insulin is in your body that is yet to have done its job is how I think people think of it. Do you think of it? How do you think of it?
Jennifer Smith, CDE 2:34
True. And I think in in another way to define it. It's kind of like the expected it's the expected decay or action time over a defined period. So you know you've got this many units of insulin, your insulin action time is defined as four hours let's say you had four units taken 50% should be done by two hours after you Bolus if you have a four hour action window of that insulin right. But that's like the nutshell. Right? of insulin on board. I think insulin on board individually is very ill defined. It is not individualized unless you really test it out.
Scott Benner 3:29
And I so Kenny comes on and I and I think you know Kenny actually can yes on and talks about loop a lot. And if I'm not mistaken, his child's insulin action time he has set pretty short a prior to any kind of algorithm. I had Arden's insulin action time set at like two hours, two hours, I never remember, I never didn't want the pump to suggest insulin. Right. So I so I wanted that, you know, the way I talked about it with people is that there's a setting inside of your pump. And you just get to say, how long your insulin lasts for right, your insulin action time is one hour, two hours, three hours, four hours, five hours. If you use loop has an algorithm, it measures it as six, right?
Jennifer Smith, CDE 4:17
A five to six hours. If you use one particular like action, you know, profile, you can choose from multiple there's a child base, there's a adult based, then there's one that you can adjust the hours within, for the people who are doing some of their own coding and whatnot. They can also self adjust within their code, what they have their insulin action time kind of set for. But yes, each pump, whether it's algorithm driven or just conventional pump, loop pump or not. It is something that each pump has built into it. And again, I don't think that it's very well defined for people even just starting a base Conventional pump in an office clinical training, it's something that gets set, and is less than a minute in explanation as to why it's set for three hours or four hours or five hours. It's set that for three hours, and then you move on to like the next setting. Never go back to it. And they never come back to it. And I don't know how many people in a first visit, when I chat with them, we look at their active insulin time. I'm like, Well, why is your active insulin type set like this? Well, what is that? What does that mean? And where do I find that? Like, that's let's start over from insulin.
Scott Benner 5:41
Because if it because it's a it's a dummy setting, in the in a pump in a regular pump. By that I just mean, if you tell it three hours is your insulin action time, right, then it and you Bolus, I don't know 10 unit new gear at noon, two hours in the insulin on board is still going to indicate is probably being like a third of the Bolus though, correct, right? Yes. And but having said that, if you if that insulin action time was set at four hours, then it would think you had insulin on board of 4%. Right? If you said two hours, it would think it was more like 30%. And my point is, is that this, this number that gets put into your pump by a doctor who just is like I don't know, most people's is like three, and they just dial it up to three or maybe four, or maybe they're thinking I don't want you to over do it. So I'll make it five. None of that has anything to do with the impact of the food and your use of your insulin. It's it's it's a nice thing. But I think we're kind of beyond that now with technology. And you shouldn't be guessing at your insulin action time. Because it impacts insulin on board. And then what happens in real life is you eat some food. You don't do a great job of Bolus going for it for whatever reason, it's two hours after you've eaten your blood sugar's 270, you're indicating you're still going up. And then you look at the pump and go, Oh, we still has insulin on board. I don't want to do anything about this. And or
Jennifer Smith, CDE 7:09
it's recommending point two units, or like point two units. That's like a drop in the ocean. Like what point two is like nothing that's like, that's like, why would I even take it there's no purpose to just do it. And that's where people get frustrated. They're like, Darn it. That's where range Bolus came from 2.2 units, I'm going to take two units instead. And then it becomes like this willy nilly management of, well, I know the pump is wrong. Why is it wrong, though, right. And I think you made a really good sort of like comment that I think leads into insulin action was formulated to cover carbohydrate. That's how insulin rapid acting insulin was formulated to cover the expected in and out effect of carbohydrate. It's why we are very carb centric in diabetes education. Everything's about carbs. It's about counting the carbs, it's about insulin to carb ratios, right. But when we start having more than the typical well portioned, mixed meal, broccoli, grilled chicken and maybe you know, blueberries on the side, or whatever it is. Once it becomes heavier, in those other macronutrients, insulin action time, isn't wrong. But the reason that it doesn't look like your blood sugar is where it's supposed to be. Once insulin is done working, is because the other pieces of that meal weren't covered the way that they should have that. So it I mean, there's a lot of mix within evaluating insulin action time. How long does your one Bolus really stretch out and work for you? Is it getting you to where you want to get blood sugar wise? And then when you bring in pizza, versus the chicken and broccoli? What happens? Right now I'm stuck high and my pump is recommending point two units. I know I need more. We don't need more because your active insulin time is wrong. You need more because there's something else in the picture that wasn't covered. And it needs to
Scott Benner 9:30
be Yeah. So at a basic level these these measurements were set it for perfect world situations, not for the situation you find yourself in right away. There is a world where if you send your if you set your you know, your insulin action time at three hours, your insulin on board will probably reasonably be right if you're always eating the way you described. But the minute you elongate a meal impact by adding fat to it or protein or something that starts hitting You know, an hour and a half later, after you've eaten it, these are these are new impacts on your blood sugar that this, this simple, simplified formulas not thinking about. And I understand, right? Like, you can't explain all the stuff we talked about in the podcast if somebody's in a five minute doctor's visit, right? Right. And so, but the problem ends up being is you set the settings somewhere, and then you tell people, well, this is it. Insulin on board, if you have insulin on board don't Bolus, it's a, it's a generic thing to say. And you might be right sometimes, and and that might be wrong sometimes. But people get into this situation where they're in their home. And they know they should do something. And what rings in their head is the doctor told me not to correct before three hours. And I don't know if you've ever taken 24 divided by three. But there's only so many three hour segments in the day. And that's how you make yourself crazy. So waiting three hours feeling the pressure of this blood sugar's high, I don't want to do the wrong thing. The doctor said I have insulin on board still, it's sort of comes down to there's another epic defining diabetes episode that I think is called. I don't know if it crushed it and catch it. When I probably where I probably say something like, it's not stalking if you need it. You know? Yes, yes, you could stack insulin, do it wrong, make yourself very low. But it's not stalking if you need it, meaning that one meet and
Jennifer Smith, CDE 11:30
if, if you need it, you may want to go to the variables that we hash through in like very, I think really good detail, right? Because those variables are some of the reasons for saying, I'm not stalking, I'm taking extra insulin now. Because this variable is in the picture. And I know that I need it. My pump isn't recommending, but my pump doesn't have my brain. It's it's like a locked, I see this, you only need this. You are in real world. You know, you know what's going on.
Scott Benner 12:06
You need to understand I play there. Sometimes I think I say the same thing a lot. But you need to understand that 10 carbs of rice is going to impact you differently than 10 carbs of grapes than 10 carbs of pizza. And the Bolus that probably works well for the grapes, let's say doesn't work for the rice definitely doesn't work for the pizza. And so you take the insulin you think you're supposed to have you get high, take it again, a doctor would call that stalking. But I would say that if we're talking about the pizza, you just didn't understand how to Bolus for the pizza to begin with. Right? Right, or you used more insulin, or you would have timed it differently. This is the point where I've never really said this before in a defining episode. But if you tuned in to hear about insulin on board, and you're like they talked about insulin action time a lot. I think that if you really want to understand insulin on board, you should just go find the other pro tips and the other defining episodes and educate yourself about the big picture. And then I don't think you think about insulin on board anymore.
Jennifer Smith, CDE 13:11
Well, and I think the other thing, as you mentioned earlier is we become we've become in the past, I would say even three to five years of a lot of these algorithm driven pumps that people are using, I think with learning more about why is the system doing what it's doing. Why does it seem to work better than my conventional pump did? And some people get locked into the well, my system isn't giving me more insulin. I think it needs to be, but it's not giving me more. It's not helping me more? Well, our, our algorithm driven pumps have much more, I guess, a lot longer insulin on board or insulin action times, right. They're much extended comparative to what you may have had set in your conventional pump. I noticed that difference very early, going from conventional pumping to loop I did. And it was also a question for me. I was like, Well, I see it's giving me more and on my conventional pump, I probably would have given myself more with a I've got this much like hindsight that I know I need this much more, and I feel safe doing it and I can do it. But my pump wouldn't have recommended it. These systems are following blood sugar in a way that a conventional pump wasn't. And it's taking into consideration the glucose shift, where again, a conventional pump is not it's locked into one point of data that you're giving it to get back a suggestion. Whereas the algorithm driven pumps they're adjusting based on our rate of change, and the more information you feed it, the better can decide what to give you? And how long to look for that along with gets drawn out active insulin time.
Scott Benner 15:06
Yeah, it's important to know that what if you're experiencing, you know, a rise that you that you don't expect, it's not always just change your meal ratio, because your meal ratio might work really well, for a lot of things, it just doesn't work well for Chinese food, right. So you don't want to change your ratios in the pump, you want to change the way you think about that specific food. And I mean, that's a, that's a trial and error situation. But you you have to be able to look and go, my ratios work most of the time, they don't work for these foods, I have to figure out how to Bolus for these foods better. And and the other thing that what you just said made me want to talk about was, I guess I do actually still pay attention to insulin on board. But it's more about during a fall. So if I'm managing a high blood sugar down, or I have a real steady, lower blood sugar, and I want to know if it's going to drop, that's where active insulin makes is important more concerning to me than it is while I'm bolusing for food, crackers, one bolusing for food, I can see what's happening, I can see the big jump, I can see. Well, I mean, listen, I'm not into bolusing perfectly every time I don't think you should be that way. But if your blood sugar's one at a half an hour, after you ate, you didn't Bolus right. You know, like there was a way to do that better. There, that's easy to deal with. But when you find yourself at 180, or 200, and you start attacking it, and now you're dropping down. Now it's important for me to know how much active insulin is here because I can look at the act of insulin and decide how much juice as an example, would, would right counteract that act of insulin. So almost thinking of it as correcting a high blood sugar was almost like Pre-Bolus thing for the juice. And now put the juice in so they can do their job. And then the rest of it is just putting it in in a place where you kind of come in for a smooth. Yes, yeah. So you don't do it too soon or too late. And it is a lot like trying to land a plane apparently. So. Correct. You don't want to you don't want to fly off into the horizon and you don't want to crash into the ground. So good comparison. Yes. Great. I've never flown a plane in my life. And I never I flown a plane. Have you
Jennifer Smith, CDE 17:20
really? I have. Yeah, like a little, you know, like, a four seater. It's not like it was a huge plane or anything, obviously. But it was fun.
Scott Benner 17:29
Or and Lieberman was on here once and he offered to take me out. His parents live near me. And he was living in he was the CNN CORRESPONDENT Israel when I spoke to him, but I think he's back in the States now. And I was like, No, I'm not getting a small. He's like, we could fly down to here and get a sandwich. And I'm like, No, I don't know.
Jennifer Smith, CDE 17:50
It's it was it's really noisy. I mean, really, really noisy. But it was super fun.
Scott Benner 17:57
All right, so yeah, maybe I would do it. Six parachutes strapped in my face. Thank you very much for talking about it. Yes. On board with me, of course.
A huge thank you to one of today's sponsors, G voc. Glucagon. Find out more about Chivo Kibo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juice box. If you'd like to hire Jenny Smith, she works at integrated diabetes.com. And she does this for a living, you should check her out. And don't forget that T one D exchange.org. Forward slash juice box link, go fill out that survey, please.
I want to thank you very much for listening. I want to thank you for sharing the show with other people. I want to thank you for the wonderful reviews and ratings that you leave. I would like to invite you to come check out the Juicebox Podcast Facebook page. It's called Juicebox Podcast type one diabetes, it's completely it's a private group is the words I was looking for. So about 23,000 people in there now they all have diabetes, great conversations going on. You can jump into one of them or just sit back and watch. I'd also like to remind you that today's defining diabetes episode was the latest in a long line of defining diabetes episodes. You can find them at juicebox podcast.com diabetes protip.com, or right there in your podcast player just search for defining diabetes juicebox they'll pop right up in your podcast player. There are so many I can't list them for you right now. And if you like the series, let me tell you about The rest of them. You know what I'm going to come back to this one diabetes pro tips, they begin at episode 210 and cover a bevy of topics. Those are also with Jenny Smith. There's the diabetes variable series also with Jenny variables that impact your type one care Quickstart episodes, how we eat everything from vegan carnivore, low carb flexitarian, intermittent fasting episodes for how we eat popular request episodes, stuff like what's in your go bag, switching to an insulin pump, how to split long acting insulin, bolusing, insulin for fat, all kinds of stuff there. What else we got? There's a great mental wellness series all about type one everything from sneaking food to hard questions to kids ask about type one. In a number of those episodes, I'll be joined by Erica Forsythe. She is a therapist who also has type one, there's a ton of Scott and Jenny episodes, so many to choose from their how to Bolus for fat and protein. We have a number of episodes about that. I have a great four part series about pregnancy with type one diabetes, and a ton more about pregnancy. Some in the defining diabetes episode, some in the pro tip episodes. Just so many we've done so many great conversations with pregnant type ones. And mothers who recount their pregnancies, ton of great stuff. I said ton a lot. I appreciate that. You're letting me go on that. But about algorithm pumping. Like if you're using a loop or any other algorithm actually don't miss the fox and the loop House series or any of the others. We just finished up the defining thyroid series which is really well received by people. And after dark so many afterdark episodes living with bipolar psychedelics, heroin addiction, we sex, divorce, sex workers, disordered eating from male and female perspectives. They're all there in the afterdark series. And last but not least, I told you I wasn't going to list the defining diabetes episodes but you know what Dammit, I'm going to you're ready. I'm gonna hammer through this. So today we did insulin on board. But going all the way back to Episode 236 When the series began, we have defined Bolus Basal honeymoon a one see time and range standard deviation extended Bolus algorithm, noncompliant glycemic index and load Pre-Bolus Trust will happen low before high brittle diabetes stop the arrows, ketones insulin resistance and over Bolus feeding insulin bumping nudge rage Bolus compression low and interstitial fluid, fat and protein rise. Dawn phenomenon smudgy effect feed on the floor insulin sensitivity factor adrenaline highs, insulin deficit growth hormone stacking insulin hydration, a lot of diabetes, moody diabetes, crush it and catch it see peptide and beta cell and of course today's insulin on board and there will be more. You can't use the tools if you don't understand what the tools are. Again, if you want to see those lists, join the Facebook page Juicebox Podcast type one diabetes, go right up to the top of the page where it says featured. And there is a post in there with lists of all of these episodes. And honestly, these are just a fraction of the episodes that are available in the Juicebox Podcast. So if you're not already subscribed, please do subscribe in the audio player that you prefer. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
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The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!