#800 Lazy Control IQ Ninja
Megan is the mother of a type 1 who uses Control IQ.
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Scott Benner 0:00
Hello friends, and welcome to a wow and welcome to episode 800 of the Juicebox Podcast. If I was the kind of person who celebrated meaningless milestones, I would definitely celebrate this
so Meghan was coming on to talk about control IQ. She said she thought she was terrific at it. That's why she booked to come on the show. Then she heard the episode called control like you, Ninja, she rethought it, but she's still here. Turns out she had a lot more to talk about. So this episode sort of broken, I mean, a little bit in half, there's a lot of her story up front, a lot of control like you on the back end. But don't miss Megan story. It's really interesting. And I think you're gonna like it. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plant, or becoming bold with insulin. I say that 200 more times there'll be 1000 episodes. Here, here's something I didn't think I'd be saying for this long. But I'm back to tell you that if you're a US resident, who has type one, where is the caregiver of someone with type one, I need you to go to T one D exchange.org. Forward slash juice box and fill out the survey. That's it, join the registry, fill out the survey takes like 10 minutes, you just have to complete the survey and you're done. You know the whole thing. You're going to help people living with type one diabetes, you're going to use the music, you're going to sorry, you're going to move diabetes research forward, you might help yourself. There's a lot that could happen. It's all good. Nothing bad. This, this whole thing is 100% HIPAA compliant, absolutely anonymous. I mean, I've done it. A lot of people who listen to podcasts have done it, but just not enough. They need more people. And as soon as you guys go and do it, and they get to their limit, I can stop saying this T one D exchange.org. Forward slash juicebox. And I know you think, Scott, I know you don't want to stop this. You're getting paid to say this. But it's not the truth. Really, I don't get paid to say it. I get paid when you complete the survey. So honestly, I do want to stop saying this because there's a limit. And I just want to get to it. And I don't know what I would say in this space. If you guys would just go fill out the survey and then we'd find out if you just go do it. But no, no, you don't have time for this. Oh, whatever. Sorry, that got away from me. This episode of The Juicebox Podcast is sponsored by Dexcom. Makers of the Dexcom G six find out if you're eligible for a free 10 day trial of the Dexcom GS six at my link dexcom.com Ford slash juice box, find out the speed, direction and number of your blood sugar right on your phone or on your Dexcom receiver dexcom.com forward slash juice box. podcast is also sponsored by us med get your diabetes supplies the same place we do at US med to get started, all you need to do is get a free benefits check by calling 888-721-1514 Or going to us med.com forward slash juicebox. Getting your diabetes supplies does not have to be a hassle. Try us med if you have trouble remembering my links, you can always go to juicebox podcast.com. Scroll down a little bit. They're all right there. Just tap tap. When you click on my links, you're supporting the podcast and keeping it free. So I appreciate it when you take that extra step.
Megan 3:39
My name is Megan. I'm married and I have three kids. My oldest is my type one. He's 12. So he was diagnosed four ish years ago. I'm really bad at math. He was diagnosed at nine. But it's he's got a summer birthday. So
Scott Benner 3:56
let's spend 45 minutes but no, I'm just kidding for three or four years. Yeah,
Megan 4:01
it's been we're coming up on our pump is going to be replaced
Scott Benner 4:04
soon. Oh, that's a nice way to keep track of it.
Megan 4:08
And then I have two others. An 11 year old boy and a nine year old girl.
Scott Benner 4:13
No diabetes there.
Megan 4:16
No, I am currently being in the process of being diagnosed with thyroid stuff. They're thinking Hashimotos I've got the marker the whatever tests they did was really high. Maybe for one of the antibodies or whatever.
Scott Benner 4:32
Okay, do you have you can you did they feel it like that?
Megan 4:36
Oh my gosh, you can see it. Oh, really? And I can feel it's right on my vote like you know, a little indent is in your neck.
Scott Benner 4:44
Let's say I do. Wait. Okay,
Megan 4:46
well, wait, what do you like that little like the front indent in the front? Yeah.
Scott Benner 4:50
It's it's there. It's my thing different than yours.
Megan 4:53
I don't know. Like, I'm like you have that little like, I don't know. It's like an indent on your neck. If you if I lean up, there's like this big bolt right there instead of an indent. I
Scott Benner 5:05
know where you mean, I found it. Yeah, yeah. Yeah. And then
Megan 5:09
I have all the classic symptoms, but I have other issues. So I was attributing them to other illness issues that I have. And it was like, Oh, no.
Scott Benner 5:17
Do you mind picking through this for a minute? Before we talk about Yeah, you're here. Okay, that's fine. What other issues,
Megan 5:23
um, I am freezing all the time, which I didn't think anything of until we had like an 80 degree, one of those random 80 degree days in the Midwest in the winter, and I was still freezing. I could sit in front of a space heater and still feel cold on the inside. But I'm sweating on the outside, like, my skin is warm, but I just can't physically feel warm. And I'd wake up in the middle of the night drenched in sweat, and have to change several times. I keep waking up drenched in sweat. I'm super fatigued. I could fall asleep at the drop of a hat. Which normally is a big problem for me. Like I can't sleep. Changes to my menstrual cycle.
Scott Benner 6:12
Hold on one second. unrested doesn't sleep 12 hours wake up.
Megan 6:16
Doesn't matter. What like I'm sleeping 12 hours but no, yeah.
Scott Benner 6:19
Well, you have kids, I've got kids.
Megan 6:24
And what else? I've been losing weight on purpose. And then suddenly, when all of these symptoms kind of started, I started gaining weight no matter what I was doing. I have like water retention stuff. I have headaches. I have vision changes. My eyes went really dry. Gosh, there's been a whole bunch of them. Like when I look at the list. It's one of those like, Yep, yeah, yep. No.
Scott Benner 6:51
Do you have any other medical issues that you thought were causing some of this stuff?
Megan 6:56
Yeah, I had really bad pregnancies with HG hyperemesis gravidarum. And they were severe. Like had a patch tube had, you know, organ failure and all that. And so when I came back from that my body hasn't worked properly and couldn't process any medications. And we didn't know that until I got scary side effects from the medications I used to take. And so I ended up with all those like really scary side effects. Hyper that you read on the side. Oh, like you're gonna take this antibiotic and it says, Hey, you don't you could end up with like nerve damage and peripheral neuropathy. tendinitis one in
Scott Benner 7:35
4 billion people think they can fly on the leg tracks Yeah,
Megan 7:38
that's me. I just made up a word or medication I take
Scott Benner 7:42
Yeah, made up a word I'm hoping isn't really a drug. Okay, I'm
Megan 7:45
probably is hyper Wyatt. hyperemesis gravidarum Whoa,
Scott Benner 7:50
whoa, whoa, I barely got through high school M S. MSS. So like throwing up I got it I got it.
Megan 7:58
So
Scott Benner 8:00
we and you have a this happened with your first pregnancy?
Megan 8:03
It didn't it got worse with each one.
Scott Benner 8:05
Do you love babies or sex or something? Why did you do it again?
Megan 8:10
They were all we wanted kids but we did not intend to have them when we
Scott Benner 8:14
did. Megan did you go to a couple of weddings happen? No,
Megan 8:19
my husband's a pastor and
Scott Benner 8:21
hold on a second we had Go ahead.
Megan 8:25
And so we had some you know, stressful times. And so we're not
Scott Benner 8:34
Oh, okay. You guys want to go on vacation or have sex? Well, we can't afford vacation everyone to the bedroom. Gotcha. Oh,
Megan 8:43
my gosh. My 12 year olds gonna listen to this and be mortified one
Scott Benner 8:46
day 12 year olds gonna be like, Oh my God, my mom is just banging all over the house there for a while until her hyper MSMS is great gravid dari I'm got it. Wow, you aren't? Well listen, mad respect. If you made three babies going through what says severe nausea vomiting weight loss possible dehydration feeling faint may also occur. It is considered more severe. The morning sickness symptoms often get better in the 20th week that that
Megan 9:12
mine did not. Like I was throwing up approximately like 30 times a day. I couldn't keep down any food or any water. I couldn't even swallow my own spit. And I lost more than 10% of my body weight in. Gosh, I want to say it was less than less than six weeks.
Scott Benner 9:32
Did you have any thyroid markers back then anything that you were aware of?
Megan 9:38
So looking back, I was mismanaged medically. And I ended up with PTSD induced medical trauma stuff from what went down in the hospital and how I was treated. I was told it was all in my head. Which really messed with me psychologically.
Unknown Speaker 9:58
I'm so sorry. That's terrible.
Megan 10:01
It is, but I'm better now we don't. We don't talk about there. Well, no, I can talk about it. Just I can't go to that medical system.
Scott Benner 10:09
Hey, did you did you see here on the Wikipedia, which I have no reason to doubt. It says other potential causes of the symptoms should be excluded, including UTIs and overactive thyroid.
Megan 10:21
Yep. So what happened afterwards is I had, I went through about one year of having the most doing blood draws multiple times a week, because my thyroid went crazy afterwards, it went super high, and then would crash and go super low, and then go super high and then crash and go super low,
Scott Benner 10:42
hyper hypo, hyper hypo bounced around. Yep, for about
Megan 10:45
a year. And I was a hot mess. But I was also hating all medical stuff. So I wasn't willing to pursue anything beyond just making sure I wasn't going to die. So they thought something was going on, and then it kind of leveled out. And by the time I got into see a specialist, they were like, I think I think we're okay. And I was like, okay, don't want to push it. If I don't have to deal with medical stuff, I'm not going to. And then once mica got diagnosed, I started, I had no choice but to be super involved in medical stuff. And now I'm much more comfortable. I listened to the thyroid series, which pushed me to talk to my doctor and pushed him to be like, like, oh, no, but your levels are fine. I know. It says you're high on this and you feel really crappy. But your levels are fine. And I'm like, but my levels are elevated compared to what they used to be. So maybe I'm just sensitive to it. And can we just treat the symptoms? And they were like, well, you can go talk to somebody else. So I'm doing that, that appointments in two weeks.
Scott Benner 11:53
Oh, what lovely, what a lovely group of doctors.
Megan 11:57
I mean, I'm, I'm a complicated case. So I'm aware that they look at my medical file and go oh,
Scott Benner 12:03
to me, though, that would make even more common sense to just say, well, you mean, why don't we just try the sense right for a couple of weeks and see what happens.
Megan 12:11
They think I might be allergic to it. So they know that I'm sensitive to hormones. Because every time of the month, my I have similar symptoms, he I get really sick, I get really tired, I get headaches, I get migraines, I get like, it's it's just a really crappy couple of days of you more so than it used to be.
Scott Benner 12:31
I'm wondering, I'm not suggesting I'm wondering, have you thought about maybe like losing your lady parts inside? Like,
Megan 12:38
um, they did. But they said no to that, because they were afraid what? What hormone therapy would do? Because, again, they're not sure if that would work or not. And if we remove it, then we're stuck having to figure it out. Instead of working with what we got. You know,
Scott Benner 12:57
Megan, you're quite a catch. Pastor Bob is very lucky. Very, very lucky. I don't know his real name. It's not important. But yeah, this the episode told him
Megan 13:06
that I was like, I hope you love me. I'm really expensive. I'm a cheap date, but I'm really expensive to be married. To have on your health insurance, now there's two of us.
Scott Benner 13:17
Oh, my gosh. Oh, I'm so sorry. It's, um, it's horrifying. I mean, a lot of what you described about the thyroid symptoms. I mean, Arden is often very cold. And and we just actually went back to managing slightly differently. It's too early for me to say whether or not it's it's having good effects or not. So I can't really say here, but we've we had added a T three supplement to her regimen. And we thought it was working really well. But then she started having this odd side effect that we attributed to the T three. Turns out it was probably the birth control pill. And so we went for months without it and then have just recently re added Saito mil which is T three. We tried. What did we try? We tried to armor the T three, I think it's that didn't know what you're talking about. Yeah, that didn't help her. So we went back to the site Omo, which we now see helped in the past, and her energy has returned. And now Now I'm waiting to see if hopefully it balances out her body temperature because she's the same thing she touches you she like, she's like, I'm so cold and she touches you and she's warmer than you are. Yep.
Megan 14:30
So that's what's been going on. And that's the thing that was most concerning to me is everything else I can attribute to other things. I mean, I'm tired. Well, I'm also getting older. I've got kids. Life is just exhausting. We just came through a pandemic, like, you know, I could just be over it.
Scott Benner 14:46
Megan, from my perspective with the experiences I've seen and had and talked about with other people, I'd say I hope that you're not going to have a weird like reaction to it. You should try it A replacement. If that replacement helps but doesn't help completely, then then get somebody to help you with the T threes, the T three side of it, too, I can't tell you that Arden Arden's energy returned in like four days on site.
Megan 15:14
I'm excited to just do something. Like I thought it was cancer for a while. So like, I'm just really grateful. It's not that. So, you know, let's just let's, let's figure this out. I just need a doctor who's willing to work with me. Yeah.
Scott Benner 15:28
Okay, so I'm
Megan 15:30
just gonna find one.
Scott Benner 15:32
Is that become problematic? Or have you been able to,
Megan 15:36
um, we live near a major metro, near in rural terms, we live an hour and a half away from major metro area. So I feel pretty confident we can find someone. It's just the process, I'd like to just find them right away, instead of having to, I would have to start with a surgeon because that's what they're having me do first. And the surgeon I've already talked with on the phone who was like, Yeah, I'm not the right person. But I will see you and we can refer you to the next person,
Scott Benner 16:07
I would try to find, although they sometimes don't take insurance, but I was gonna say more of an integrated, integrated, like situation, they're usually more willing to try things on the fly. They work through email, like there's like when ordered needs an adjustment. I don't go to an appointment, I send someone an email. And I'm like, this is happening. What do you think and the return email says, I think we should lower it to six times a week instead of seven. Go ahead and do that. Okay, that's over in five minutes, you know, because that's the thing that you would appreciate that many people wouldn't, which is the the span of time in between. First you have a problem, then the problem impacts you enough that you actually look into it, and you look into it, inevitably, someone doesn't help you, you've got to go find somebody else. Before you know it. It's nine months later, it's a year later, you're beaten down by the whole process, you're almost hostile to feeling terrible. And you start getting it in your head that no one's going to help. Right? And then that's very frustrating and off putting and makes it difficult to kind of soldier on so yeah, yeah, I say. I say that a month on T four. And you should feel much better. And if you don't, then you start looking at the T three aspect of it. And yeah, I mean, I can't tell you the again, four days of cider mill, and no more like Artem was coming home from school. And if her head went over, she'd fall asleep like she had to purposely stay sitting up after school, or because if she laid down or laid back, she just felt right asleep. And she'd sleep for four or five hours in the afternoon, then wake up and be tired. Yep. And now suddenly, everything's better, you know. So, anyway, good luck. And that, of course, 15 minutes into it. It's not why you're here. Although I would tell everybody to check out the defining thyroid series. It's helpful, right?
Megan 18:03
I feel because I have, you know, that medical anxiety that I feel better prepared to go and speak with a doctor and not take no for an answer. Because that's been my concern is the doctor says no, and I go, Oh, I really don't think so. But okay.
Scott Benner 18:19
Well, I mean, we kind of skimmed over the the point that we kind of skipped over the point that you're being treated like while you're really sick. It's a shame. That's your life. Goodbye. Let's go live with it. Right like that basically happening to you. So
Megan 18:36
yeah, I have a bald spot starting on the back of my head that hasn't been there. I have used to have really thick hair and whatnot. And all of a sudden it's really starting to fall out. And the doctor looks at me and goes, Oh, yeah, you do have a bald spot. And then like, that's a bummer.
Scott Benner 18:54
How can somebody not see that and give you a thyroid replacement hormone? It's terrible. Yeah, you know, so sorry. My God. Episode 413. thyroid disease explained is a comprehensive episode with the person who manages Ardens thyroid, so yeah, check it out. Alright, but you're here Megan, because you feel like a control IQ ninja. But then tell me tell everybody what you said
Megan 19:20
lazy ninja.
Scott Benner 19:21
Oh, lazy. Hey, that's all right. Lazy control IQ ninja. Yeah, I think that's valuable. Tell everybody what you said right before we started recording though. Arden gets her diabetes supplies from us Med and you can too. Now why would you want to do that you're probably getting your supplies from somewhere already but us med has quite the bone of P days. You know what that means? I can tell you if you want. I'll tell you at the end. For now just know this. US med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one distributor for Omni pod dash. They are the number one fastest growing team am distributor. They are the place where Arden gets her on the pod supplies. They are the number one rated distributor in Dexcom customer satisfaction surveys and I haven't taken the survey but I am very satisfied with how they send art and stacks comes to us. And they've served over 1 million diabetes customers since 1996. Is that not enough, I can give you more an A plus rating with the Better Business Bureau. They accept Medicare nationwide and over 800 private insurers. US Medicare has everything from insulin pumps and diabetes testing supplies to the latest CGM like the FreeStyle Libre three and the Dexcom G six, white glove treatment is what you're going to get a US med now here's how you get started. You call 888-721-1514. Or you go to a link on the line online is another way to say that US med.com Ford slash juice box either call the number that's a special number for Juicebox Podcast listeners. That is what you are. Or you go to the link especially for us to and you get things moving. Next thing you know your stuffs just showing up. And it's easy, because that's how US med does things. They do it easy. They want you to have better service and better care. And so far that's what I found that I get from us med you can to 888-721-1514 or go to us med.com forward slash juicebox oh hell i for i promised Tiwa bone a few days means bone a few days bone fee days. It's bone the feed is bona like that with a knee bone a fee days spelled with an A sounds like a a person's honesty and sincerity of intent or documentary evidence showing a person's legitimacy or credentials. I guess maybe do you need to be a person to have bone a few days? You'd be a company couldn't you? Alright. I don't know we've gone too far down the rabbit hole. Let me get you back to my oh real quick. If you've never seen a Brother Where Art Thou the movie, there's a great scene where George Clooney his kids tell him he's not bonafide it's it's worth. It's worth your time
Megan 22:12
I said I listened to Jeremy's podcasts, the control HQ, Ninja one. And then I felt like a total imposter. I had a moment of panic long moment of panic, that, well, maybe I should cancel my thing because that was that was good. Like, that's probably better than what I could say. So I don't want to confuse anyone.
Scott Benner 22:34
Luckily, you have so little energy, you weren't able to email me.
Megan 22:37
I have anxiety. So I just didn't. Oh, interesting. So I was like, you could just say no.
Scott Benner 22:44
So your anxiety, okay. So you have that you have anxiety, generally speaking throughout your life.
Megan 22:50
No, that came from my pregnancy issues with the doctor and whatnot, that I couldn't trust myself to make decisions for myself. Because I was constantly told that I was doing it to myself, and that what I was feeling was wrong, what I was thinking was wrong, the actions I was taking were wrong, and that the doctor knew better. And I just needed to ignore myself and focus on some have somebody else make all the decisions because I couldn't be trusted. And so that really messed with my head. So like, I used to not be able to go into grocery stores because I didn't trust that I could buy the right things afterwards. Like I would have major issues and breakdowns in the store, and flashbacks and all that stuff. Because I you know, pasta was on sale, and it wasn't on my list. And I buy it and it's like, Oh, that's too much. And you know, that whole would send me spiraling and it was really humbling. Yeah, but so for that reason, it still pops its head up in some situations, but I've always been a bit of a perfectionist who likes to do everything perfectly and right. So
Scott Benner 23:59
well, I know, I've ever thought but first, let me just say this. Has it ever gotten to the point where someone actually had to help you out of a public place? Like yes, so if you heard like, there's a lady laying over top of the fresh cheese in aisle seven, please somebody go get her. Like
Megan 24:14
the pharmacist at Target got to know me really well because I had a bench
Scott Benner 24:19
company come in and have the magnets Okay, have a seat, honey, we'll get you some water about like,
Megan 24:25
you still like sit in the middle of an aisle and just be like, I'm fine. Just need to get through it.
Scott Benner 24:30
Everything's fine. Everything's not fine. Someone help. Here's what I'm gonna tell you. Don't be surprised if balancing your thyroid helps with your anxiety. That'd be great. Yeah, seriously. I don't know if I've ever said this. I probably have. It's fine. We're like 700 episodes into it. Now Megan, I don't think there's anything left to hide. Not that I was hiding anything to begin with. But my wife as people have heard was Couldn't find treatment just like you for like seven years. And and when she finally when we finally kind of badgered someone to giving her Synthroid, I told the doctor in the room, I'm like, listen, you're going to be saving her life. And he said, This is not life threatening. And I said, Oh, no, no, I'm going to kill her. I was like, that's that you're saving, I have a whole dog in the backyard already to push her into because I can't take. She is not pleasant. Like it was it was like she was very short tempered, and she'd fly off the handle about things she didn't even know she was doing. It like really starts taking that Synthroid. And everything was just ooh, she's all good. As a matter of fact, there's a lady that lives in the town I live in, who there's no way she listens to this sober, safe. She was well known as maybe one of the most unpleasant people you've ever met in your life. And we used to bump into her a lot because of something with kids. And then years went by where we didn't, and then we bumped into her again, years later, a completely different person, so much so that she was aware of it, apologized for how she may have been in the past, and then told us about how she's now medicated for her thyroid issue. So you don't sound nasty. But are you? No, no, you're not saying unreasonable.
Megan 26:24
I've worked in customer service a lot. So I have that whole thing. No, but
Scott Benner 26:28
But I mean, we can filter it to Pastor Bob, though not not to other people. My wife wasn't unpleasant to strangers, please.
Megan 26:35
No, I don't think so. I mean, I definitely have moments of being Hi strong. When I get stressed, it's amplified. More so than it used to be more so than it feels normal. So I generally try to avoid being stressed if possible. funny when people do a lot of it's avoidance. But I do I quilt when I get really stressed, I go and quilt, and that stab things, lots and lots of times at high speeds. That helps.
Scott Benner 27:09
Oh, there's a joke in there about you and your husband. We're gonna just go right past. Going back to being on the podcast to talking about control like you. When you said anxiety stopped you from like, so if you didn't have anxiety, do you think you would have canceled? No, okay, good. Excellent.
Megan 27:27
I used to be much more. I'm amazing. type personality.
Scott Benner 27:32
You? Well, let's find that. Also, do you think that people find it incredibly distasteful to joke about the sex life of a pastor? Because I think they probably
Megan 27:41
I don't know, guy, right. We're, we're people. We have children. I think for some people, it's an uncomfortable topic. Just because they like to think of their pastor one way and not as you know, he's, he's my husband. You know, that sort of thing. But people around us tend to get it. So good.
Scott Benner 28:03
Excellent. Okay, so how long is your 12 year old been on control IQ?
Megan 28:09
We got it. I actually looked back because I know I had messaged you way back in the beginning. When we first were diagnosed because I was super frustrated with our endos office. Because I just I'm a control person. I'm a data person. And I was frustrated at the pace at which they were moving was not as fast as I wanted to move. And so we got our pump pretty much right at six months. The Windows Office would not budge on that. They required six months waiting.
Scott Benner 28:41
Okay. So you've had three and a half ish years?
Megan 28:46
Yes, I believe so. Because we get a new one in. Yeah, sounds right. Three and a half years because we're right at like six months to go. Okay, so
Scott Benner 28:57
has it always been control like you or were you just using a tandem pump it were like even
Megan 29:02
it was Basal like you Okay, when we started,
Scott Benner 29:04
how long did you base like you for
Megan 29:07
until the day control IQ dropped when he got it right away that night.
Scott Benner 29:15
So that doesn't sound like a ringing endorsement for Basal IQ. So tell me just a little bit about or was it How was it?
Megan 29:22
Um, I liked Basal IQ. I, we did okay on it. We actually did correction. We did well on it. We were 5.6 ish. And so I liked it. But we were still touching the pump a lot for corrections and things mica has this. We used to have this issue because he had he went from lunch to recess to PE and how to dose for lunch because he would eat school lunch which is notoriously high carb and you know that whole trend manage that and he would go outside and running with active insulin makes him drop. But then he had like, you know, he would have one class between recess and PE and he would skyrocket during that. And then he would drop back down. Once PE started, and that was just always the bane of our existence. All throughout stuff and control IQ fix that but Basal like you did not hold on. My son is asking me if he can eat. No,
Scott Benner 30:29
he cannot eat. We're making a podcast. This is unbelievable. Tell that kid? No, just kidding. Go ahead.
Megan 30:34
Yes, Pre-Bolus.
Scott Benner 30:37
Mega, do you think we should put the ad right here? Sure. Okay, then we'll come back in
Megan 30:42
10 minutes. There we go.
Scott Benner 30:50
longtime listeners will know I haven't put ads in two different places in the years. But this just works so well. I couldn't, I couldn't say no. I'm here to tell you about the Dexcom G six. And if you're using control IQ, you already have the Dexcom. But if you're thinking about the control, like you are on the pod five, or just being able to see your blood sugars in real time, right on your iPhone or your Android device, or on your Dexcom receiver, well, then, in fact, you might want to write this down. Dex comm.com forward slash juice box, go to that link. Learn more about Dexcom find out if you're eligible for a free 10 day supply of the Dexcom G six. A lot can happen at that link in just a few short minutes. The Dexcom G six is gonna give you customizable alerts and alarms, show your glucose readings right on your smart device. And are for you a world where zero finger sticks can be your norm. It's time for you to take the next step with dexcom@dexcom.com forward slash juice box just go to the site. Scroll down a little bit, fill in a tiny bit of information and you're on your way. Everything we do with insulin at this house is predicated on the information we get back from Ardens Dexcom G six. It helps us make great decisions. It helps us to feel safe, it helps us to see Arden's blood sugar when she's not with us, you can do all of that as well dexcom.com forward slash juicebox if your glucose alerts and readings from the G six do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions Good job pausing so I can cut it right there. That was excellent Meghan. Very well done. Yeah, no problem. I don't know if he did that on purpose but if you do, I really appreciate it. Okay, so basil like so Basal IQ helpful but not wasn't able to overcome those kind of like real intense situations at school is that right?
Megan 32:53
Yeah, and we always had an issue and we we still do but we've managed it now it's control IQ with as soon as he falls asleep he would skyrocket and so I would be constantly going in there and having to touch you know, go dig it out of his pocket and dose and then wait and then go back and dose and so I was hoping control IQ would really help with that. You know, it did a really good job of getting rid of pretty much the lows but we were having some serious issues with the highs and it's not that we weren't doing well it's that we were just touching the pump more than we wanted to
Scott Benner 33:32
Yeah, you know it's funny you just said something but it's never occurred to me once you said I digging it out of his pocket so when you have a to pump you have to sleep with it on your person. Yeah. Oh, I never considered that once it's not funny. Yeah, yeah, that
Megan 33:48
it's fun because before bed I memorize what pocket it's in that way when I go in there I know what side he needs to be on so I can get it out.
Scott Benner 33:57
You think you could go out into public and steal people's wallets with any kind of like certainty or you're not that slick? Probably like 75%
I think we should try I really think you should go out and report back it's got to be in their
Megan 34:11
front pocket though in a jersey type shorts or pants
Scott Benner 34:14
when they just got to be pretty specific mega we don't want you reaching down in people's front pockets out in public but when you when you get arrested just tell people my thyroid is very unbalanced. This is not my fault.
Megan 34:25
I thought it was an insulin pump.
Scott Benner 34:26
They made me call a surgeon first or I might have the medicine by now. A surgeon by the way. What Yeah, I don't want to go backwards but that's Miss Oh my God Who told you to go to a surgeon for art once the doctor
Megan 34:39
just thought maybe I just want it removed. Maybe because it's right on that border of size. And I'm like yeah, but I think it's gonna go down if we manage it.
Scott Benner 34:50
Very well good. Is it coming up the goiters you're not getting a goiter right. This is I have 120 You have a goiter edit enlarged thyroid. Yep. Megan you are painting a sexy picture. Okay. Okay, so back to this. So you switch to control IQ about how long ago just roughly
Megan 35:10
whenever control IQ drops, so that had to have been at least
Scott Benner 35:14
two years. It was about two years now. Okay,
Megan 35:18
I think so that feels about, right. It dropped the for the pandemic, to talk about, oh, it's gotta be. It's been two years.
Scott Benner 35:28
Has COVID been going on so long? We're measuring stuff by it.
Megan 35:31
Yeah, that's kind of how we do it. Because I have no sense of time. For that.
Scott Benner 35:36
I have. I'll tell you the one thing you know how they talk about long COVID, where some people lose their, like, smell forever, or something like that. Here's something I've lost from COVID Being clear that I've never actually had COVID. But from the experience of COVID I never know what fucking day it is, ever. I never ever ever know what day it is. And I blame, I blame the lockdown. I really do. Like, I don't even know if it matters. Now. I'm not even sure if I should be upset by it. I just don't
Megan 36:04
care. I just wish everyone looks so much older. I'm like, How long ago was was that? Three years ago? No, it was just like last year. Right?
Scott Benner 36:14
Okay. Oh, that's interesting. Okay. All right. So I'd like to ask you about when you switch from basically Basal IQ, which was just shutting off your Basal if it thought he was gonna get low, right? To control IQ, which is an algorithm and you know, for everybody listening, control IQ, do it yourself loop. Android, APS is another do it yourself, right? On the pod five. The thing that Medtronic is gonna come out with Next, all that stuff. They're all algorithms, but they're not the same algorithm. They're all proprietary in one way or another. I mean, do it yourself not proprietary, but you don't I mean, they're different programs, they work different ways. They accomplish things differently. If you're saying to yourself, I don't understand why that is, you probably don't understand patent law. Or why TiVo has a 32nd, Skip, but your DVR from other companies can't have it. It's because TiVo patented it before your other company thought about it. So you know, like theirs. They can't just copy it, it's got to be this is my guess it has to be slightly different somehow. So all this stuff? Yeah. And trust me, I don't know, I could have made that all up. But what I'm saying is that none of them are exactly the same. So you switch to control like you, what's the first hurdle going into an algorithm for you?
Megan 37:30
Um, it was, at least, gosh, I want to say six months before we started working with the algorithm. I was still trying to manage the way that I always did. And just hand over stuff to the pump instead. But then, we started getting crazy lows, because I wasn't working with the algorithm. So what was happening was the algorithm would do at 60% dose dosage correction thing, because it saw him starting to go high. And then I would go in and be like, super aggressive and be like, hit it. This is it's always a unit, not knowing that it had done the 60% like 10 minutes earlier, because my son's at school. So we're texting and whatnot. And I started to get really frustrated. Because our text conversations, instead of me just going manually, dose one unit, you know, basically override in the pump that you're just going to do a one unit, because I know that's what it needs. Instead, I was having to go when was the last time the pump, you know, do you have insulin on board? Okay, what's it doing? What's the you know, and having to go back and forth on that and really interrupt his day was bothering me. Yeah. But control IQ wasn't being aggressive enough. In my opinion at that time, so we ended up going to sleep mode 24/7 Which basically made it so I could still do all the high corrections, but it could, you know, everything was a little bit easier. But then we ran into problems when we would do. Mike is really sensitive to exercise. So on days where he's really active, he needs drastically less insulin all across the board. On days where he isn't really active, he needs a lot more insulin all across the board. I'm talking about Basal swings from 10 to 17. So it matters for a long time afterwards. We tried exercise mode that was a hot mess. And we just kind of wrote it all off and just dealt with the fact that control IQ wasn't everything we wanted and sorted the look into loop. And then I listened to Fox in the loop house and he was talking about Would ISF changes throughout the day, instead of basil changes? And how it's not the basil that's changing, it was how you react with that insulin, you know, now the insulin is doing this much more instead of this and thinking about it that way. So I immediately scrapped all the settings and started over trying to see if managing it through ISF would work. And that got us dramatically better results. But we were still in sleep mode 24/7. And then he was gonna go to diabetes camp, and they're like, he can't be in sleep mode. Like, well, shoot.
Scott Benner 40:42
Well. Okay. So first of all, I don't understand why they care how you're achieving your success. And secondly, how did it feel when you heard Jeremy say, like sleep mode all the time? I don't do that for you like,
Megan 40:55
Well, I agree with that now, but back then I would have been highly offended. I was one of the people on posts where people are like, what do you do? And I'm like, sleep mode 24/7. The way to do it, it's the only way the algorithm works. And people would comment below me and be like, you just don't understand the algorithm. And I was like, this woman doesn't know what she's talking about. Turns out who didn't know, clearly you don't understand?
Scott Benner 41:18
Hey, you know, what's interesting is that you are going to hear this in the, on this podcast for years to come. Settings, it's all settings, its settings, whether you're doing it manually, whether you're doing it with needles, or whether you're doing it with one of these algorithms, if your settings are wrong, it's just not going to work. Well, you know? Yeah. But and so settings is the
Megan 41:42
Yeah, it's a lot easier. Now, I'm a big data person. So I, I have Excel spreadsheets, I plotted everything, I tracked everything. I've done that since the very beginning, trying to find patterns trying to find this and it was such a mental burden. But at the same time, it's it's something I do like it's my personality. So it's not as big of a burden as some people would think it is. But because I needed to figure out control IQ, the regular way for camp, to not have to go through all this whole thing. I just we sat down. And we've just dedicated ourselves to figuring it out. We had a higher a one C in it was like 5.9 While we were figuring it out. But since then it's dropped back down. And I will probably not go back to sleep 24/7 ever again. Because this is so much nicer. We touched the pump so much less there are days where all we do is Bolus for food. You know, when something does go wrong, we know how to work with the algorithm instead of against it. It feels much more like the pump is helping. Instead of just being that annoying little kid like I'm helping. Don't know you're not stop it. I can as long as it's a steady rise going up, I know that I my high alarms are set for 160. Because I know that the pump can handle anything under that, you know, our settings are good enough that it adjusts. And on days where it's off. I know why it's off and we do a full settings change. And I know what it needs to go to generally, like yesterday, yesterday. Just yesterday. Yeah. We were having issues where all the sudden he was going into the three hundreds just guy rocketing after everything. And it was like, Okay. Obviously, the settings that were nailed in, you know, two days ago, are no longer. Right. And so we went back to another one that, you know, we don't make those really small changes that Jeremy does. I will least change by point five each time. Because Mike is so sensitive. I know that that's what we need. We went from 15 units of basil to 17.6. And you know, carb ratios went from nine to 5.5. Because I know that's what it needed. And today we have a nice, a nice line, assuming you know has been a little bar he just decided to eat doesn't mess it up. But we've been in range since we made those settings changes last night.
Scott Benner 44:34
That's all ballsy moves. That's really well done. Good for you. That's excellent. I just had we just switched port art and spent on like 33 Different kinds of birth control pills in a year and a half. But she just went back to one that we thought was working and it's not important anyway, there's a switch that was made. And about six days ago she started having a Lowe's and I moved her basil by point one and her in some sensitivity by by one number. So I made her I took her insulin sensitivity, maybe it was two, maybe I moved it from like 41 to 43. And her Basal from 1.2 to 1.1. During the day, it worked great for three days, and then zoom, it came back around, and suddenly I couldn't get her blood sugar below 190. And then all I did was put the point one back in the Basal and move the insulin sensitivity back to 41, or blood sugar went right back. It's crazy how like, how how, because that's not something people would think of, I think that most people hear that and go 1.2 to 1.1 That's meaningless, or 41 to 43 these seem like small adjustments, but they're just, they're just so important. You know, it's and I listened to I don't adjust things as frequently as Jeremy does, either. He's He's incredibly good at it. And you know, I mean, it's amazing. I'm gonna have him back on again to talk about it more. But I mean, it's, it's more, you use the phrase earlier, like touching the pump. That's more that's more touching the pump that I'm I might be able to do, I guess,
Megan 46:10
see, we make those changes when he's in the shower. So like when the pump is charging. So technically, it doesn't count as touching the pump to me because he's not there. To him. It's not in his Yeah. And we used to have to make settings changes multiple times a week, I was constantly chasing his insulin sensitivity. I didn't know it at the time, but that's what I was doing. And so we heavily rely on exercise mode. Exercise mode is kind of our What is it ace in the hole or pocket or whatever, whatever, it's our ace up the sleeve. There we go. It is it is one of the things we probably that has changed us the most is using exercise mode. I'm not sure we fully use it as intended, but it works for us. I know you're supposed to do it when you know hours ahead of time, which the only time we do that is he has double PE on Mondays where he has two peas right in a row. So it's always at the same time I know it, he knows it. So when he leaves for school in the morning, we switch to exercise mode. So that way, he doesn't have to eat as much. Because his insulin sensitivity, he goes from super sensitive, or no super resistant in the morning. And then somewhere around 10 3011 o'clock, he becomes super sensitive to insulin. Like he's been up and moving around for the day, he's hydrated, he's moving around. And all of a sudden, around that time, a couple hours after he wakes up, he becomes really insulin sensitive. And so the problem we were having is, how do you dose him in the morning when he's resistant, and not skyrocket the blood sugar but not crash a couple hours later, when he's now sensitive. And now that little bit of tail end of insulin that's left is now going to go further. And that insulin sensitivity catches it. So we'll go from 60 insulin sensitivity and I think at like 1030 or 11, I have like 130 to account for. If he's going low, it's going to catch it. But we generally don't have a problem with high so I'm not going to worry about it trying to correct anything right then in there. And then it drops back down into the 90s in the afternoon. And kind of stays there until bedtime when we drop it again. Because the the problem we have is using the sensitivity is what we're able to do is account for times when he's going to go low. So it catches it. Yeah, but also not be so aggressive. Because if we increase the basil, he's gonna go low when he doesn't need it, because he doesn't always need that much basil, but if we tell the algorithm, sometimes he's going to go low. And here's what it's going to take to catch it. But otherwise, this Basal is on point that then works then it works. We don't have to do a bunch of Basal rates we just have a bunch of insulin sensitivity is telling it Okay, right now it's gonna go further right now it's not going to right now it is right now it's not
Scott Benner 49:31
change the algorithms understanding of the impacts of the insulin.
Megan 49:35
Yeah. And so you know, there's some bad times where he will go crazy high and somewhere he won't Well, that's fine. We'll just have the Basal where it needs to be when he's fine. And then drop that insulin sensitivity or raise it, tighten it there we go to like 45. So that way we know if he's starting to rise. We've got to hit it hard. So we're telling it if you see that rise, you need to adjust it really hard at that point. Yeah. But otherwise, if he's fine, it's not really caring what that insulin sensitivity is doing. If you have a good blood sugar,
Scott Benner 50:10
I see what you're saying I use insulin sensitivity stop Arden from getting low overnight, because some, sometimes she'll try to get a little low around three, four o'clock in the morning. So in a while, and she has a less aggressive insulin sensitivity at that time of night that takes care of it.
Megan 50:29
Yep. So we've managed a lot through that. It's excellent.
Scott Benner 50:33
It really is. I can't tell you how exciting it is to hear someone just talking about this stuff on this level. And I'm wondering how you got to it, like, what is it? Like? What was what was it about your journey that led you to understanding this? Where did you get information from?
Megan 50:52
I have always felt that there is something like I always felt there was this like something that I was just always missing. And so that has led me I like to understand all aspects and all facets of a problem. So I started listening to Juicebox Podcast, the day of diagnosis, it was somehow in our welcome packet. And that was before the Pro Tip series. So I remember listening to it, and it'd be a completely foreign language. And just like I just got to push through. And just we'll figure it out as we go. And then ordered things like a pancreas and sugar surfing. And I think I started off with a good level of information, our endos office for as frustrated as I was with them, and the beginning, did a really good job of setting us up for success, I now understand that their job is to make sure that nobody dies, and that everyone feels supported. And then those early days you are going through it with such a large group of people in some of these larger practices that they've got to teach to the common denominator, and they can't, they can't allow me to do certain things without putting somebody else in that same class at risk. You know, because that person just isn't at a place for that.
Scott Benner 52:17
Do you feel like? Do you think that you can feel that way? Because you dug yourself out of a hole? Like what if you were still down in the hole? Wouldn't you think differently about how they managed, you
Megan 52:29
know, because they were, they were still presenting good information, just not as fast as I wanted it. And I remember other people in our class struggling with some of the same concepts where it was like, got it done. Next thing, like I had that a week ago. And you know, I know why they needed to go slower. I was just really frustrated. It took a lot of convincing me on their part, like I would call them when you when you're supposed to call and they'll give you your numbers, like you read your blood sugar numbers, and then they tell you what changes to make. I use that time as practice. And so I would come up with I think all the changes that need to be made. And then I will call on the numbers and say before you say anything, here's what I think. And here's why. What do you think, you know, and they will be like, Yeah, that sounds good.
Scott Benner 53:21
See, I may I say something? Not that, obviously, just a side note for a second. I see that as a slight negotiation. And I think that sometimes not your specific situation. But I used to do that I used to give my opinion before getting the other person's opinion. And then I started realizing that my opinion was impacting their opinion. I don't know. Anyway, that doesn't sound like it happened there for you. But I'm just always careful about that, like you can you can involve somebody in a thing and then put them in your mindset and then you don't get the benefit of what they were going to say. Had you not spoken first anyway.
Megan 53:58
Well, we had let them talk first. But what was happening, this is when I would say okay, but here's what they were like, oh, yeah, that's because you heard what I said. Like, you clearly still need our opinion, because that's where this is coming from. And so it was the Can we can I just tell you how I came up with my numbers, right? And why? And then we can have a discussion as to where the flaws are in my thinking why you think, you know, this number that you came up with is better, you know, helped me understand. And they were very willing to do that.
Scott Benner 54:31
Just generally what part of the country you're in.
Megan 54:33
Yeah, I'm we attend in Omaha. So we're in really rural Western Iowa.
Scott Benner 54:40
And you and there was something in your welcome packet about the podcast.
Megan 54:44
Yeah, we got like a JDRF. Like the blue backpack thing and somebody else had put other stuff in there, like some local parent or whatever. And there was a list of resources and think like a pancreas was on there. Juicebox Podcast was on there. And there were a couple others have Like just things you might be interested in, my husband is visually impaired. And so he stayed with my son in the hospital in Omaha, and I was the one who was driving back and forth and back and forth, and back and forth, you know, to take care of our kids. And then when they would go to school, I would drive to Omaha for education, and then stay there all day and then come back. And so during those drives, I was listening to Juicebox Podcast.
Scott Benner 55:27
Wow, that's very cool. You know, I'm unaware of what you know. But it's not like somebody calls me and says, Hey, we're gonna put your name on a thing, like, so I don't know if that's very cool.
Megan 55:37
Well, and I'm not sure how many people actually I'm one of those people that reads everything. I don't know how many people have actually read that known that that was there. But it was one of those. No, I'll take whatever help I can get. I am out of my element here.
Scott Benner 55:52
Good for you. Yeah. I mean, it's obvious that your, your, you know, how do I want to say this? After I speak to somebody privately, I can usually tell if they're going to be okay. And most of the time, it's more about their desire to be okay. And to meet things head on, I guess. And to do whatever work is coming their way than it is about anything else. Like, like, I think I really do have a very childish expectation that you get what you expect most of the time. So
Megan 56:25
Well, I remember in the very beginning, our Endo, the first indication they had that we were different. was we got in trouble for poking too much. Finger poking because we didn't have the Dexcom. At first, we were having issues with our insurance covering it, and it was a whole thing. And so we weren't on Dexcom. But you know, Miko was going to school. And I was like, Okay, well, he needs to poke when he you know, before breakfast, like half an hour after breakfast. So I can see what's happening. Is it? Is it going low? Is it going high? Did we miss and then before PE after PE before lunch by like a little bit so that way I can see if we need to Pre-Bolus or not. And then actually before, right after lunch before he goes out to play when he comes back when he and I like that's a lot. And I was like, but I need in order to manage properly. That's the information that I need. And that's why we want the Dexcom. And then I got the Dexcom. And that was overwhelming at first. Interesting because it was almost too much information.
Scott Benner 57:31
I got what she asked for. Hmm, yeah.
Megan 57:34
But that was a game changer was having all that information,
Scott Benner 57:38
we we would test 1110 1112 13 times a day when ordered. And I learned later after seeing Dexcom I actually did this with an adult through the Facebook group. She didn't have a CGM, yet she was trying to keep up with what we were talking about. So she made a plot and just kept test testing herself. You know, I'm making dots in front of me now testing yourself testing yourself testing yourself. And then she'd come by later and then connect the dots. And it would within reason give her a Dexcom graph. Not a great one, obviously. But it gave her the the better idea by just by connecting the dots.
Megan 58:17
We used to Well, we still do, we use tide pool. And so we would upload our pump, not our pump data. Our CGM, not CGM meter, there we go gonna get the right word, our meters into there from the school and from home in order to get the graph and whatnot. Before we had Dexcom. And actually, we still do it now because you can overlay the Dexcom with the finger graphs. And so it kind of when we have compression issues or like we have bad, a bad sensor that just calibration and won't hold and whatnot, we can still see what the numbers were actually doing overlaid on the Dexcom graph.
Scott Benner 58:57
Great at it when you talked about a meter. Were you talking about the contour meter available? No. Okay, that's what we got sent home with. Oh, you did? In fact, get sent home with the Contour Next One blood glucose meter?
Megan 59:08
Yes, we did. And I really liked it. And then they came back and said, Oh, whoops, your insurance doesn't cover that. You gotta go with this other one. And we are on a high deductible plan. Yeah. So we make it work with what we got. Gotcha.
Scott Benner 59:23
Well, I'll say that that sucks. But I do wish that you were able to go to contour next one.com forward slash juice box. And
Megan 59:33
actually, the thing that I loved the most about it was the size. Yeah, it was much, much smaller and the ability to do to try again,
Scott Benner 59:43
the second chance test trips. Yes, yeah.
Megan 59:46
Yes. That was a huge adjustment. Not to have and it still is super frustrating at times when you have to throw a strip away because you get an error for not enough blood.
Scott Benner 59:59
I'm really sorry that that was your experience, because it's possible that the test strips could cost less than cash than they do through your insurance for other meters.
Megan 1:00:08
Yeah, but because we're high deductible, we need everything to go through, because we hit that deductible every year. So for us, it makes more sense. And that was one area where I differ from Jeremy. I don't care about the numbers being super accurate, as much as the trends. That's one thing that makes us really lazy. If it's close enough, it's close enough. And we just,
Scott Benner 1:00:32
it's working with what you're saying is whether a blood sugar's really 110 or 115 or 120. You don't care if it's I don't care. Yeah, it's right. It's I'll tell you. That was a thing. So it's weird because there's, you know, there's before and after, right, there's before CGM, and after CGM, in my mind managing insulin. And before CGM, I had to give over to that idea. Like, one day I was just like, it can't matter. If he can't matter if she's really 80 or 90. It can't, it can't matter if she's 150 or 140. I just have to treat 80 and 90, and 70 and 100 as good and 140 and 150. And one ad is not good. And 200 to 10 is bad, like, you know, or whatever. However, I was thinking about it like simply in my head right? And move things in the direction that that indicated to me because because meters were not as good, but I'm joking aside. That Contour Next One meter is legit accurate, and the meters that I've had prior were not. And so I didn't know what was going on. And there was no CGM, and no, God knows, like, you didn't really know what your blood sugar was. I had that thought. Day four in the hospital when they brought out this. You know, this big thing that has starred in is blood sugar with and I said, are we getting one of those? And the nurse laughed and she goes, No, this thing's like $10,000 You're getting this. And she handed me that old like Gumdrop looking freestyle light meter or whatever it was, I forget exactly. So she tests Arden's blood sugar with the $10,000 meter, I test Arden's blood sugar with the freestyle meter. The tests are like 60 points different and I go, Well, how am I supposed to make a decision? She goes, just use that one. And I'm like, You just told me this one's accurate. And it's 60 points lower. And she was like, Yeah, I mean, this is the one you're getting.
Megan 1:02:27
Yeah. Okay. Yeah. So we kind of just roll with it. It's kind of a general, is he going higher? Is he lower? What are we working with and just making sure that the algorithm is taking care of it. And if it's not, we usually tweak ISF before we tweak basil. I'm not too worried if Basil is on point, more so than ISF. And every so often, I'll upload our information into T connect, and I look at the logbook report, which gives you the average basil delivered per hour. And I have an Excel spreadsheet, I input all those numbers, I average it out to kind of what it works out to be and that's my new Basal give or take how I feel.
Scott Benner 1:03:10
Wouldn't it be crazy if you started taking thyroid medication, your anxiety went away and you weren't able to pay as close attention to blood sugars.
Megan 1:03:18
I actually, um, I'm pretty chill when it comes to blood sugar really now, comparatively, having control IQ nailed down, there'll be whole days where I'll go, oh, shoot, I never looked. Is he like, Is my phone okay? Like, did did I miss something? And it's like, oh, no, no, we were good. And we've had a lot more days like that than not. Especially we were having issues with the cannula. And we switched over to the true steel sites. And that has been world's better. I'm excited to see what our a one C does, because we're not dealing with failed sites anymore. Because we were getting multiple field sites a week. And we'd catch them. And we were able to hit them hard and you know, manage it really well because of the pump. But it was still higher blood sugars than we would have liked.
Scott Benner 1:04:07
Yeah. Wow. That's really I mean, I'm generally Jen, Jesus. Oh my god, Megan, I gotta record twice today. And I gotta go get a COVID test for my pre op for my knee surgery. I'm sorry, I'm starting to feel the pressure. I can't find the words I'm looking for. But I am genuinely excited about the success you're having. It's really it's really, I mean, just It's heartwarming to hear how well you've done with all this, you know, especially while you're dealing with other stuff personally, that you're still you're still able to get to all this. What do you think the um, I don't usually ask questions like this, but I'm going to what do you think the secret is to getting through all this and kind of coming out the other side?
Megan 1:04:49
Knowing what's good enough. I was convinced the entire time for well, the long time that if I just got the numbers perfect. If I just figured out, you know, I got the data just right that everything would be okay. And it turns out just knowing the numbers isn't enough, you know, a lot of it is just guessing. And going with instinct, what feels like a good number, what doesn't, you know, the numbers will get you close. But you know, your, your kid or yourself best? You know, there are days when it's 120 at night, and you know, I'd like it lower, but like, I haven't slept in a few days. And you know, what, when 20 is good enough, I'm just, I'm just gonna leave it, it's fine. Sleep is important, you know, or he's in a test, it's okay. If he runs a little bit higher for the test, you know, he'd rather just not be interrupted. And that's, that's fine. You know, taking a longer term approach to every day isn't a test. But, you know, I look at when Jeremy was talking to him, I went looked at those same reports, we had the exact same results he was. And I was like, Okay, I guess what we're doing is work. And
Scott Benner 1:06:09
we'll see that's the other part of it is that you have to find what works for you. You know, and listen, your situation could change. I mean, your kids 12. Which are the hormones here yet? Yeah, right. How long did that start?
Megan 1:06:24
Couple months ago?
Scott Benner 1:06:25
Did things change when that happened? Yes.
Megan 1:06:30
Drastically are Ioss. tightened. We used to be like one to 10 for breakfast. We are now one to 5.5. And still, that's on days where he's active.
Scott Benner 1:06:44
So your car? Your Car? ratioed.
Megan 1:06:47
Yep. And we will basil used to be pretty steady around 10. And when he would exercise and whatnot, it would drop down. And we're now at 1718 with corrections. Still and whatnot. What's the way 8590? I don't know. He's growing like a weed and eating everything. Well, I don't know anymore.
Scott Benner 1:07:11
Interesting. What's his basil right now?
Megan 1:07:14
Seven teen, I think it's 18. Right now, for today. And it's still it's probably increasing it. So I'll have to look at it.
Scott Benner 1:07:23
Yeah, at the general theoretical point one per 10 pounds. That that at 80 pounds brings you like 19 ish pounds. Like, like 19 1819. Us. But before? How so? Just six months ago, you were getting away with 10 units of basil a day. versus 18. Now? Yep, yeah, and 10 divided by 24 is point four an hour. And now you are you more like point eight an hour. Now? Where are you? Um,
Megan 1:07:55
we are at this is gonna sound weird. We're at point six, five, okay, for most of the day, because he has PE and he does spontaneous play and all that other stuff that that is our conservative number and then our ISF will adjust it as needed. So that's kind of the midpoint between days when he's really active and days when he's not.
Scott Benner 1:08:16
So you have you have a lower Basal but a more aggressive insulin sensitivity factor?
Megan 1:08:21
Um, generally, yes. And then we kind of fudge it around. But point six five cents to be where he is he'll go sometimes. His evening Basil is 1.20 That's just overnight.
Scott Benner 1:08:39
Wow. So the insulin sensitivity then get weaker overnight.
Megan 1:08:46
It is at 45 Around eight and then at 10 it drops or raises whatever 270 And then at one o'clock it goes to 130 Well to account for any that is I'm pretty sure because we're really aggressive and that other part of night that basically that's to catch it in case we were too aggressive. And then he has we doesn't really have much Dawn phenomenon but he does have feet on the floor. I can see on his grasp the exact moment he woke up and got out
Scott Benner 1:09:25
of bed here. You described it earlier without actually calling it that. Yep.
Megan 1:09:31
So it'll it'll just rise like crazy.
Scott Benner 1:09:34
Do you think it would be cool if I call this episode lazy control IQ ninja? That's fine. I don't by the way, I did lazy I just think you found what works for you.
Megan 1:09:44
Yeah, I did want to touch on exercise mode because I mentioned it before how we use it. Besides PE we also use it Mike have on days when he's active will stay sensitive for hours later. So we keep it Going during that time to prevent those lows that happen, you know, four or five hours later after, you know swimming or after running or whatever, you know those lows that come later, we'll leave exercise mode on that. And then our endo had a great suggestion that we have started using, which is on days worth the he just goes low for no reason, you know, we just we can't seem to get him up, we will switch it to exercise mode while we figure it out. And that has saved us so many times from having to do full setting changes and whatever, we just have that one random day where they're just low, or their pancreas seems to be working. Exercise mode fixes that for us. Nice, you know, not treating it as exercise mode, but going like, no, what's 140 What you the algorithm thinks is 140 is actually 110. For us, in reality, for however his body is reacting to this insulin. So it's not that it's targeting more, it's just that we're telling it Hey, back off. And using it as a way to do that, instead of actually thinking of it as exercise.
Scott Benner 1:11:11
Yeah, interesting. I mean, there's, I kind of think of it as impacts, right, like so the exercise the exercise has an impact for him that you know, results in lower blood sugar. So if, if the impact is lower blood sugars, but it's not from exercise, who cares? You know, if the settings on the pump help from exercise, they very well may help for other reasons why blood sugar's would fall, even though they're unknown to you at the moment. Yep, that's great. I mean, calling it exercise mode is reasonable, but I mean, they could call it like, Hey, you're gonna get low mode, and
Megan 1:11:44
we treat it as a low Temp Basal mode, like a reduced Temp Basal mode is what we treat it as
Scott Benner 1:11:51
smart. That's great. Is there anything we haven't talked about that we should have?
Megan 1:11:55
Um, I don't think so. That was pretty much it.
Scott Benner 1:12:01
Do you still feel nervous about this? Are you okay with what you
Megan 1:12:03
know? I'm an extrovert. I feel comfortable once I start talking.
Scott Benner 1:12:07
I know that you were hard to shut off a couple of times. Yeah, sorry. It's okay. I'm very happy when people are excited to talk. That's excellent. I just want to make sure we don't miss anything. And I don't want to like I noticed this a little shorter of an episode that maybe you were expecting, but I literally have to get in the shower, get out of the shower and record again. No, you're fine. Yeah. Now everyone knows I'm showering in the middle of the day, although they didn't know it was the middle of the day till I just said it. So now. Now I feel silly for mentioning any of this. I want to just say one more time. I'm incredibly impressed with what you've figured out. And so many people that have come that come on here figured out I'm really grateful that you come on here and share it with other people as well. I do think these are the conversations that will lead to others finding their what works. And I think that's what's most important. Not that there's rules and we have to follow them. And if you don't follow them, then you're not going to succeed. I think there's a way for everyone to get the help they're looking for. Oh,
Megan 1:13:06
real quick, go ahead. The other difference between Jeremy and the way we manage is we do Pre-Bolus? Yeah, we have to with the way we manage, because for us, we have it set up so that way, you know even if it suspends when we're in that Pre-Bolus I know that it's going it increases the Basal on as soon as he starts to rise again. So it increases to cover that next bit. So we're not concerned with that with the way that our numbers are input in there. Okay, all right. Yeah, that makes sense. So it suspends a bit but then as it starts to see that rise, it adds that insulin back in.
Scott Benner 1:13:42
I was incredibly impressed when he said that because I don't know how to I don't know how to manage food without Pre-Bolus thing. So I
Megan 1:13:48
mean, there are times we don't, you know, sometimes we'll treat a dropping blood sugar as Pre-Bolus Or we'll add some extra because I know he's gonna want to eat right away. Yeah, well, that's my son's preference,
Scott Benner 1:13:59
word or pizza or stuff like that. I don't care if you Pre-Bolus Before you start eating. I don't even think about it's funny. I don't think so much about Pre-Bolus thing. Here's a deeper look into my mind. I don't think so much about Pre-Bolus thing about its connection to when you start eating I think about it as with the connection to when the food starts impact. Yep.
Megan 1:14:19
Yeah, so we do cereal once a week. His current kick is Reese's puffs. You know, it's been lucky charms or whatever. And that definitely needs that needs a 25 minute Pre-Bolus
Scott Benner 1:14:32
You know, you almost have to be falling when he starts to eat
Megan 1:14:35
it. Yeah, sometimes if he's falling too quickly, we will have him take up he eats a banana, too. You know, we do all the foods that are scary in the morning. He eats chocolate chip Eggo waffles and bananas and regular yogurt. You live
Scott Benner 1:14:50
in Iowa. You're nowhere near an ocean. You don't know how to live. I mean, you're landlocked. What
Megan 1:14:55
do you want? 28 pre diagnosis. We just decided we'd sit down and figure it out.
Scott Benner 1:14:58
I understand. Have you ever had a good piece of fish or you wouldn't even know. Right?
Megan 1:15:02
I grew up in Southern California. Yes. Okay.
Scott Benner 1:15:06
How do you make it to Iowa from Southern you follow that boy there?
Megan 1:15:09
Yeah, I did. I love them.
Scott Benner 1:15:12
I can tell. All right, well, I really appreciate you doing this. Thank you so much.
First, let's thank Megan for coming on the show being so honest and sharing her lazy ninja perspective with us. And of course, we want to thank Dexcom, makers of the Dexcom G six and remind you to go to dexcom.com forward slash Juicebox Podcast of course was also sponsored today by us med head to us med.com Ford slash juice box or call 888-721-1514. And don't forget to go to T one D exchange.org. Forward slash juice box and take that survey. I'd like to thank you for listening today. And if you hold on one second, I'll give you the the episode number of the control IQ ninja episode which people uniformly seem to love. Episode 662 titled control IQ ninja. Jeremy is a tandem control IQ Ninja is the description. Jeremy is the father of a boy who has type one diabetes. And I was incredibly impressed with his knowledge of control IQ. It's well worth your time. That's pretty much it. Check out the Facebook group Juicebox Podcast type one diabetes. I'm on Instagram if you care. holidays are coming up. I appreciate that you continue to listen and download the show. I hope you have a happy holiday. A merry whatever. Happy this and that. Whatever you do you know what I mean? I will be back soon. And by soon I mean tomorrow with another episode of The Juicebox Podcast. There's no holiday here, baby. We make a podcast here. All right. Every day one's supposed to come one comes quality, quality, quality, non stop. Doesn't stop doesn't stop. Here it comes again. I'm feverish a little bit from the illness. So let me just apologize and bow out of this
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