#774 Too Much Bumpin'
Jenny is the mom of a young type 1 and she wants to talk about her caregiver anxiety.
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Scott Benner 0:00
Hello friends, and welcome to episode 774 of the Juicebox Podcast.
On today's episode of The Juicebox Podcast I'm speaking with the mother of a child who has type one diabetes, who recently became more anxious about type one than she was previously. Today we talked about 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 plan, or becoming bold with insulin. If you have type one diabetes, and are a US resident, or are the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box. Fill out the survey. When you complete the survey. You're supporting people with type one diabetes, you're supporting the podcast and you might just be helping yourself. T one D exchange.org. Forward slash juice box. If you're looking for a community around diabetes, look no farther than the private Facebook group Juicebox Podcast type one diabetes it's free for all and has over 30,000 members ask questions just lurk do whatever makes you comfortable Juicebox Podcast type one diabetes on Facebook this episode of The Juicebox Podcast is sponsored by touched by type one and tickets are on sale right now at touched by type one.org For touched by type ones dancing for diabetes annual show. The 22nd annual dancing for diabetes showcase will take place on Saturday November 5 at 7pm at the DR Phillips Center for the Performing Arts in Orlando, Florida. Check it out at touched by type one.org. Today's show is also sponsored by us med you can get your diabetes supplies at US med just like we do to get your free benefits check, just call 888-721-1514 or go to us med.com. Forward slash juicebox. US med accepts Medicare nationwide and over 800 private insurers. They always provide you with 90 days worth of supplies and fast and free shipping. They carry everything from insulin pumps and diabetes testing supplies to the latest CGM like FreeStyle Libre three, and the Dexcom G six. better service and better care is what you can expect from us Med and they have plenty of practice having served over 1 million diabetes customers since 1996. Us med.com forward slash juice box the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide. And they are the number one rated distributor index. com customer satisfaction surveys. Not only that, but that's where Arden gets her Omni pod and Dexcom supplies from us med links to us Med and touch by type one can be found in the audio app you're listening to right now in the shownotes of that app, or at juicebox podcast.com. When you use the links, you're supporting the show us med.com forward slash juicebox touched by type one.org.
Jenny 3:31
My name is Jenny. I've got two sons. One age 10 One age seven. It's my 10 year old that has type one diabetes. He was diagnosed when he was two. So we've been doing this for a while now.
Scott Benner 3:44
Wow. Okay, eight years. You're married? Yep, I'm
Jenny 3:48
married. Okay.
Scott Benner 3:50
And you said you're part of the Utah fan club?
Jenny 3:53
Yeah, I know. You got a lot of Utah fans. So I'm definitely part of that. I
Scott Benner 3:59
certainly do. I appreciate this, Utah very much. And other states should do the same. I don't know how you guys get information around. But But I wish you I wish you would share it. I assume there's like a Mormon WhatsApp, or something like that. Or
Jenny 4:16
no, we're not Mormon, but it's out there. There. There might be I don't know. It's blood outside
Scott Benner 4:21
of the religion and into just Yes. But a higher PR people. It's gonna be three Mormon ladies. And I think that's gonna do it for me, because they're amazing. It's spreading information around. And I know. Well, that's that's so cool. You've been in Utah your whole life. Yeah. Nice. Nice. It's one of those places that when people try to get me to move somewhere, the pictures they send are astonishing.
Jenny 4:46
Oh my gosh, you tell so great. And when I was growing up, I wanted to get out. You know how it goes. It's like, oh, I want to I want to get out I want to go somewhere more liberal. And then as I grew up, and you know, just started having kids and stuff. I'm like I love this place. It's beautiful. Well,
Scott Benner 5:02
I live in New Jersey, it is not beautiful. Oh, okay. I mean, it's fine and all, but I noticed driving art into college as we went down the eastern seaboard. And I was like, with the exception of how the kinds of trees change, you could you never know where you are. It all looks sort of the same. But every picture someone sent me of Utah, I'm like, Oh, that looks like Utah. So yeah, pretty cool. All right. So you've, let's say your kids 10. had diabetes for eight years. Have a second child who's seven? Is there any autoimmune in your family, the beyond the diabetes?
Jenny 5:39
Well, my brother actually got diagnosed with type one diabetes when he was 29. And that was about 13 years ago. And so that came out of nowhere. And it's funny how little you know about type one diabetes until it affects your life. Like I, you know, he got it. And I was like, oh, man, that sucks. And, you know, over the years, I'd be like, how's your diabetes, you know, and he's like, oh, you know, fine. And I knew it had something to do like around food. I didn't even know there were two types of diabetes. And so when my son got diagnosed, I called up my brother, and I'm like, do you type one or type two? He's like, type one. I'm like, Oh, my gosh, I can't believe this. Like, this is what you've been doing. He's like, Yeah, so I was like, Oh, my God, you don't know until you know.
Scott Benner 6:30
Did his Christmas presents? Did they get better from you? Were you like, Oh, I haven't been nice enough to him over they totally, totally.
Jenny 6:37
I'm like, oh, man, I have such respect for you, dude.
Scott Benner 6:39
So Oh, that's interesting. What What's the age difference between you and your brother?
Jenny 6:45
So I'm 46. He's 43. So I'm a little older,
Scott Benner 6:49
but you're close in age. So are you close? Generally speaking?
Jenny 6:53
I can be we weren't growing up. Now. It's like, you know, how life family life gets. It's like we talk on the phone, you know, every few weeks and check in and he recently moved to Idaho. So I don't even get to see him like, as much as I did. We're not super close. But I mean, he's, he's great. And we talk sometimes, and yeah, but you know,
Scott Benner 7:12
but close enough that my inference, by the way, was to pick your family apart. But it was it was to say, like, you guys were talking to each other. And it didn't occur to him to share what his type one was with you. And you didn't ask too many questions, either. Is that fair?
Jenny 7:29
Yeah, yeah. Yeah, I was just like, you know, he's, he's got this. And, you know, I did, I was concerned about him. I'm like this. This seems like a thing. And but yeah, we didn't, we didn't talk too much. And we weren't seeing each other very much. And, yeah, he would give him shots, kind of like, privately, you know, when we would get together and
Scott Benner 7:52
so, so when your son was diagnosed, how soon until you went to your brother and said, Hey, you got this kind of diabetes?
Jenny 8:00
Oh, in the hospital, I'm like, I'm like, bro. I'm like, you know, my son just got diagnosed. You know, in the hospital, I'm like, do you have type one or type two?
Scott Benner 8:12
Well, obviously, we can see that we can blame your parents for this. So that's good. It gets it off of you. Well, that's interesting. But no other Hashimotos thyroid stuff, celiac. Nothing like that.
Jenny 8:26
You know, you know, on my mom's side, there's some thyroid stuff. I think my aunt might have Hashimotos. Yeah, so there's some thyroid stuff. And I've been checked for thyroid. I don't have any of that. We, the rest of our family did do the trial net thing, and we don't have the antibodies.
Scott Benner 8:42
Well, that's good. That's good. It must have been comforting to know. Yeah, yeah. Okay. So you sent a very specific note, Jenny. Yes. So I don't want to beat around the bush, I want to get a dive right into the bush, if you don't mind. Let's do it. So I'm just going to tell people what you said. And then we'll just start talking, you said, I'd like to go over my sudden, extreme anxiety over being the caretaker for my type one son. So even though you've been doing it for seven years, you said his agency is terrific. You're looping so you have the backup of an algorithm. You now are just experiencing what you're calling almost debilitating anxiety around the management. So, so let's talk first about prior to when this happened. Did you ever have feelings like that leading up to this or did they just come all at once?
Jenny 9:36
Um, you know, I have had a hard time with diabetes since he was diagnosed. I mean, it is just a tough disease. And I never felt super comfortable. But in the first years, so when he was diagnosed, I was eight months pregnant. And so like a month in, I've got a newborn and diabetes, and I'm like, Oh my gosh, this is the heart First thing I've ever done. And so like, I'm just drowning, trying to figure it out. And so the first few years were kind of a blur. I'm like, doing the best we can here. And then I started looking around for a podcast, and I found yours. And so I think I found yours in 2018. So we've been listening for four years now. And I mean, you really turn things around for us. But to answer the question, yeah, like, I've always felt like some uncertainty, like, I like this is hard. And then, about six months ago, my mom passed away. And it's, she was 70 had COPD. And it was, it was time for her to go, she wanted to go. It was bittersweet. And so I mean, it was, you know, it was it was, of course, a big thing. And, and then after that, like all of these things, you know, it's like all of these busy, things started happening. And I felt like I couldn't process it. And then I started to feel this anxiety around diabetes that I hadn't felt before. And part of it was, I feel like, the more we listened to you, I feel like the more we know, and it's like, the more you know, the more you realize you don't know. And so I was trying to get the Pre-Bolus, right, I was trying to, you know, get the Bolus, right. And it's I was just not doing a great job. I feel like I'm still not doing a great job. And
Scott Benner 11:40
so So is your is your first concern, that you could be doing better? And that you're not? Or is it about safety? Where do you work? Where do you feel it? Or is it does it feel like it's everything?
Jenny 11:55
When I think about it, I don't think so much about so much about safety, I know that we can get him if he's high or low. I know, we can get him back where we need to, it may take some time. But it's just like the constant effort of it. Like, we do so many interventions during the day, you know, it's like we are, you know, I'm texting him at school. And I'm like, give yourself a quarter. Give yourself a quarter have a glucose tab, you know, eat to sour patch kids, like, it's, it's like, during this time, I'm feeling better now, by the way, like I reached out to like a number of people and tried to get support and help and I'm feeling way better. But it's still there. But my concern is, I feel like I could be doing better. And I don't know how, like i There are so many variables, that it's so frustrating to me. I'm like, Oh my gosh, she's going Hi, did I miss on the Bolus? Is the pump having issues? Is he just reading Hi, today? How much should I give? I don't want to give too much. And so just the ongoing uncertainty of it was just wearing on me. I felt like it was like, after seven years, I was having this major burnout, major anxiety. And yeah, I was like, almost having panic attacks. Like, at every meal. I'm like, is this gonna be the right amount? And I would just stare at the number. And I'm like, I can't live like this. Yeah.
Scott Benner 13:34
Jenny, let me ask you something. So in the note, you mentioned, like a five for a one C? And so is he having a lot of lows?
Jenny 13:43
Yes. Yes. That's another thing. What do we want to talk to you about? What
Scott Benner 13:46
are we calling low? And what are we calling high? So let's do that. Now before we start, like when you said like, you know, I don't want there to be a high at a meal. Like what what number it is, makes you say that?
Jenny 13:58
Um, around, like, 140 like, will usually give him a quarter around 120. You know, like, just to, you know, we're just trying to, like, serve it, you know. And so, but like, if he's like, heading up to 140, and then 150. And then when 60. So around there, I'm like, he's high, and I've missed, and then low. He goes below 70 Every day, like, I mean, he and he hits like in the 50s almost every day. So he's like getting hit, we're getting a lot of lows, like I'm correcting a lot of lows. And so are you causing
Scott Benner 14:34
the lows? By over correcting? Like, higher numbers? I mean, because Because 140 after a meal in my opinion is like there's nothing wrong with that. I understand. You don't want to go 160 7080 You don't want to get into that climb. But I mean, what would happen if you didn't throw a quarter in at 140? Do you ever just watch it to see what would happen?
Just a brief 22nd Reminder go to touch by type one.org to get tickets for their dancing for diabetes annual event being held on November 5, at the Dr. Phillips Center for the Performing Arts in Orlando, Florida, touched by type one.org. And of course, the FreeStyle Libre three is available right now at us med.com forward slash juice box or by calling 888-721-1514 Check out us med for your diabetes supplies
Jenny 15:45
you know, sometimes I will and it'll turn around. Other times, like I just don't know what it's gonna do. You know, I'm like it. Sometimes it'll go like to one ad and I'm like, oh, man, I should have corrected, you know, but yeah, I think
Scott Benner 16:00
but more often than not, you're correcting and then you need to stop a low later. Yeah, yeah. So I
Jenny 16:06
feel like I am creating a lot of the lows.
Scott Benner 16:09
Yeah, but you can't stop yourself. Yeah. Oh, what's that about? Jenny? This is gonna be fun. Thank you for being thank you for being on the podcast. I appreciate this very much. So I so first of all, you take your point, and and he's 10 now. And so was it easier when he was younger? No, no. Okay. So I didn't know if there was like a hormonal thing that was coming into play has his has his eating style changed greatly over the years? No. So Jenny, you've been fighting this fight for a long time. So the so the reason it hit you, I'm gonna guess keeping in mind that I have have no psychological training whatsoever. I'm gonna guess that you were doing the things you thought you should do. You're bumping and nudging too far causing yourself a problem on the other side that you have to fix that causes a problem on the other side that you have to fix. And then you just I think then your mom died. And then you just didn't have it in you anymore to hold it all inside is kind of how it feels. Yeah, yeah. Yeah. Well, that's, that's worth talking about. For sure. So so let's start with this. So he's, he's looping. Do you have Nightscout? Can you see what is lupus doing? Yes. Yeah. Right. So in the in the course of a day, are you seeing basil being taken away? Or are you using auto Bolus or not auto Bolus?
Jenny 17:36
We don't use auto Bolus? No. Okay.
Scott Benner 17:38
So is it taking basil away? Is it adding basil all the time?
Jenny 17:44
That that's a good question. I feel like it's just doing both, you know, it's just it's just doing both. It's like, oh, wow, he hasn't had Basal for many hours. And then all of a sudden, I'm like, seeing like, oh, it's adding a lot of Basal. So like, okay, itself,
Scott Benner 17:58
I didn't need to talk about it. I'm sorry. It in a perfect situation, it should not be taking your basil away constantly. So is it taking it away after meals? Or is it taking it away, even away from food?
Jenny 18:11
It is taking it away? It seems like it takes it away after meals.
Scott Benner 18:15
Okay. Well, that that it kind of does that that's sort of how it works. So like you put an insulin for the meal. And it it decides that this insulin that's been Bolus is enough for the food and your management for a number of you know, whatever the time is. And so it takes the basil away and it manages off of the Bolus. Adding more if you start drifting off taking away for longer if it looks like you're going to be low later. So that's fine. If at the end, you're stable, and the basil is back on. But that's not happening. What's happening after meals is he starts going up, and then you put in more insulin. And then no matter how much basil it takes away, it can't stop a little later. Does that sound right?
Jenny 18:58
Right, right. Right. Okay.
Scott Benner 19:00
All right. So I know he's gonna have to think this much, Jenny. That's fine. We're gonna, we're gonna mix we're gonna make some motions with thinking today. Nice. All right. So all right, when's the last time you open the loop up and just ran it like a regular insulin pump to see how close your Basal and your carb ratios and correction factors were?
Jenny 19:21
You know, it's been about a year like we opened it up for a month. And and that was helpful. And then but now I think we just rely on it so much, you know that I'm like,
Scott Benner 19:33
you don't want to stop. Has Yeah. Has he gained or lost weight or become more or less active?
Jenny 19:39
Yeah, I mean, he's going through growth spurt. He's eating more. He's requiring more insulin. And so yeah, I mean, there's definitely some changes going on.
Scott Benner 19:49
The episode there's a pro tip called bump and nudge to it was, it was made exactly for people like you. Okay, have you heard
Jenny 19:58
this like, well, I listened To the bumping nudge one and I'm wondering if I listened to the part two, I feel like I did.
Scott Benner 20:04
The Part Two tells you if you're doing this too much, you're done something wrong. So yeah, that's
Jenny 20:10
what I think. Yeah. And do you have time to like, look at his graphs with me?
Scott Benner 20:19
You want to do it right now?
Jenny 20:20
I don't know. We could do it like after or
Scott Benner 20:22
Oh, no, I mean, it's up to you. But like, I mean, I think for the, for the context of the conversation, if you want to do it now. It's fine. Yeah, I can give it I can give you a number to text it to if you like.
Jenny 20:33
Yeah. So I just go into clarity and then share the code, right?
Scott Benner 20:38
Oh, you want me to look at him live? No, I mean, just I'm not I'm not a doctor. I can't use this code to look at his clarity.
Jenny 20:46
Oh, gotcha. How would you see his stuff?
Scott Benner 20:50
I mean, you could do screenshots and send them to me. Oh,
Jenny 20:55
yeah. Like I kind of wanted you to look at like his past like, week and stuff and see like, oh, what trends are you seeing? But But yeah, if you can't do that, then don't worry about
Scott Benner 21:04
No, I think the trends are. What's interesting, like your, um, your I don't know what the word is. I'm gonna say personality. But I don't mean personality. There's a better word, therefore. You're clashing with this, right? Yeah. Yeah. Chinese like, Yes, I am jackass. That's exactly what I'm saying. So there's something about how you think and what the task is?
Jenny 21:31
Ah, yes. Oh, my gosh, and my husband is so well suited for this. Like, he's got like this data mind. And He only takes care of chi. Like maybe like, I mean, he does it a lot. He he's up with him. Like, every morning, he takes him on the weekends. I mean, both of my kids, and he's just, he's better at it than me. And he does it less than me. That's what's frustrating, because my mind is not my mind is not geared for this.
Scott Benner 21:55
No, I think you're just you're touching it too much. I don't know if that makes sense or not. But but so it sounds like because a 140 after meals, it's nothing to panic about. So let's talk for a minute about what happens to you internally, when you see his blood sugar go higher. You think you're you think you're killing him?
Jenny 22:14
I don't I think so. We've been listening to you. And we are like, okay, he maybe he shouldn't be going this high. And so like, so my husband is more afraid of highs, he doesn't want to see highs. As much as I don't want to see lows. And so we we kind of clashed in that way sometimes. But I'm, I'm feeling like, he's saying, hey, we need to get that number down. And so I'm feeling like, Okay, we need to get this number down.
Scott Benner 22:55
He's saying that it like 140?
Jenny 22:58
Well, I mean, we've recently talked about it. And he's like, you know, Scott was saying, like, things can like, you know, after a meal 140 is not that big of a deal. And so that's kind of a switch for me, because I thought like, if I'm seeing like an arrow up at 125, like I've missed, and I'm giving a quarter, and that's kind of where we were at. And I think we're, you know, we realize, you know, even hearing you say that now it's like, oh, you know, so there's,
Scott Benner 23:27
there's a lot about the line that's important in this. So the numbers are guidelines, but it's more about the line like 125 Straight up, that's somehow going to turn into 140 and then stabilize might just be an indication that you didn't Pre-Bolus long enough. Right? Right. And so and so if it's going to jump up and then stabilize at a at a lower number 140, like a lower high number, then that's probably too soon to correct because it very possibly because your your Pre-Bolus time might be off a little bit, you're gonna get a big push from the insulin very soon. And now you've laid some on top of it again, that is causing a low later. So your your the timing is the problem for you. Maybe because
Jenny 24:11
I think so. And that's one thing I don't understand, because like, let's say he's 112. And I'll look at that. And I'll be like, okay, about 11 minute waiting time, you know, depending on what his numbers doing, if he's coming down fast, it'll be less if he's going up a bit. It'll be a little bit more. And so I feel like I have a good grasp on that. But then like when I actually execute it, I'm like, Man, I messed that up somehow. How did I mess that up?
Scott Benner 24:37
I wonder if I wonder if the auto Bolus branch of looping wouldn't be valuable for you. Because then when he was going up, the algorithm would would try to stop it. And it would take the pressure away from you about thinking about putting more insulin in because maybe you're just bolusing too much when you're doing that. I mean, you are Maybe or if it's causing a low later.
Jenny 25:02
Yeah, yeah. Because we are dealing with a lot of lows. So what Yeah, I feel like yeah, maybe we're just just intervening too much. You're
Scott Benner 25:11
jumping the gun? That's what it sounds like to me. Yeah, yeah. Because I
Jenny 25:15
do have a history of kind of under bolusing for meals, like, I'd rather see him go a little bit higher than go low. And, you know,
Scott Benner 25:25
oh, Jenny, you're a paradox. This is wonderful.
Jenny 25:29
And then my husband will be like, you know, he's like, it's better to, you know, give a few carbs. You know, and I mean, I've heard you say that, too. But the thing is, it's like, he just like drops out like he just like the number will just go lower than I want him to. And I hear you talk about Arden. And she's not having a lot of lows. Like she's like barely going under 70. Is that right? Yeah, we
Scott Benner 25:55
don't see a lot of lows, that's for sure. Oh, my goodness. And
Jenny 25:59
then like that, you're talking about being bold with insulin, and you're, you know, you, you are bold? And so I'm like, How is he doing this?
Scott Benner 26:07
Okay, well, how I do it? And how you do it might likely be two different things. But I mean, as we're picking through this, is it possible that you're under bolusing the meal, causing the spike by not bolstering it properly, and then putting in more insulin? It's causing a low later, so so if you just put so yeah, great. So just put the insulin where it belongs in the initial Bolus?
Jenny 26:31
Yeah, but I, but I don't know what the right amount is, you know what I mean? Like I,
Scott Benner 26:36
it's likely some amount of the correction that you're using. Because it because of that quarter was in. Alright, let me try to think of a way to say this without having visually looking at you. So if let's use more specific numbers, like how much insulin in an average meal Bolus for him?
Jenny 26:58
Oh, let's say for four units, okay. And then later, you put it
Scott Benner 27:01
in a quarter? Yes, you do a quarter, then another quarter and other quarters, it usually just one time.
Jenny 27:08
I mean, it depends, like, if he's going up to like, 130 or so a quarter, if he goes up to 150, and other quarter if he goes up to 170, another quarter. So I have kind of like these benchmarks that all follow up, usually it's a quarter or a half more.
Scott Benner 27:26
Okay. So then, in my opinion, like, I mean, based on this, and keeping in mind, Jenny, that nothing you hear on the Juicebox Podcast should be considered advice, that if you just put the four and a quarter, four and a half in initially, then that would maybe stop the spike, which would stop you from putting in insulin down the road from the meal, which is then going to count which is going to then make him low later. I don't think you're far off from this, by the way, I just
Jenny 27:52
need to I feel like I'm in the ballpark. And I just want I want the ballpark to be smaller, like I
Scott Benner 28:00
Okay, so. So I listen, it could be a million things, right? Maybe the fours enough. And you're not Pre-Bolus thing long enough? How are your Pre-Bolus? Is
Jenny 28:10
there? I mean, they're dependent on his number, you know, I would say about 10 minutes, like,
Scott Benner 28:16
you know, it depends on this number. How like, so if he's one, like, I don't know, if he's 130, you'll Pre-Bolus for 10 minutes, but if he's 90, you will Pre-Bolus a shorter amount of time.
Jenny 28:27
Yeah, yeah. Like I had heard the rule of like, okay, if he's 130, you take the first two numbers. 13 minutes is a good ballpark. So you know, depending on what his numbers doing, if it's going down too fast, I'll do less if he's going up a bit. I'll do more. You know, if he's 90, I would do nine, right, nine ish minutes. You know,
Scott Benner 28:43
so So taking away taking away the internet's theory about Pre-Bolus. When when he's 130, if you Pre-Bolus Then 30 minutes later, before he eats, what's his blood sugar?
Jenny 28:58
Well, I will watch that too. Because I'd like you know, 13 minutes in if he's 150. I'm gonna add some time. If he's, you know, going down, then I'll start him right away.
Scott Benner 29:10
Okay, going down like he's 120 Diagonal down. Go ahead and eat. I mean, yeah, yeah, yeah. Okay. Yeah. Yeah, I think which insulin are using? NovaLogic vlog, gotcha. Novolog so not fiasco or loom? Jeff so if you're, so you're putting in insulin. And do you ever use the pre meal button on the loop instead of Pre-Bolus thing or to help Pre-Bolus
Jenny 29:39
Oh, no, I mean, I know it's there. And that will so the pre meal button. You push it when an hour before or half hour before and it'll kind of
Scott Benner 29:48
change the shape. This one is Yeah, right. So it I think pre meal target 72 I think that's okay. I want to say that's the lowest target that loop lets you have but I mean, maybe that's Something you can change in the programming, but I'm pretty sure it targets the 72. So are you
Jenny 30:05
guys still looping? Or are you have you moved to Omnipod? Fight?
Scott Benner 30:09
No Arden has used on the pod five for a number of months, and then we've gone back to looping. Really? Yeah. So okay, she did not enjoy carrying the controller and wanted to everything on her phone. Gotcha. I was concerned on the part five worked exactly the way I expected it, though it did. It did exactly what I thought. And it took me a little while to learn. It took me a little while to learn how to set it up and how to get it going. Right. But once it did, it did exactly, I don't see a ton of difference in any of the algorithms. I guess I probably shouldn't say that. But they all go about it slightly different way. But, you know, I think with every, every algorithm I've seen so far, there are times when you need to help it and there are times when you need to leave it alone. And those things. Yeah, you know, they take time to learn, which is which?
Jenny 31:02
Yeah, and so with loop, do you? Do you just follow the recommendations? Or does she, you know, like, Hey, I'm gonna eat this many carbs. It's saying, I should give this much insulin? Do you guys just like follow the recommendations? Or are you like, playing with it a little bit? Like, I think she needs more than that. Or less than that?
Scott Benner 31:26
No, generally speaking, we follow the recommendation based on our settings.
Jenny 31:30
Right, exactly. Your settings have to be right. I feel like our settings might be off a little bit. And like, we're always tinkering with it. Like, I'll put in some carbs. And I'm like, I don't think that's right. I'm like, I'm going to do more. And so you know, then that probably screws things up on the back end. And so,
Scott Benner 31:47
you know, I mean, if the settings aren't because, because it causes you to think too much like if your settings or your insulin to carb ratio is way off, then you're going to be constantly. I don't know, like second guessing it like it sounds like you're doing before you even get to see if it works or not. So I mean, your settings have to be right. Also turning like opening the loop for a month is I don't think that was I don't think you need to do that. But I think you need to find out a is the Basal rate I have holding him stable without making him well. That's an important thing to understand.
Jenny 32:21
And I should start with that at night.
Scott Benner 32:23
Yeah, yeah, try it overnight. Because it's simpler. He's not probably in puberty yet, right. So you don't probably don't have a ton of like, growth going on and things like that. So maybe you can get a couple of good nights where you can check that. And then you say, Okay, well, my Basal looks right, good. Next step. How am I you know, how am I setup for my insulin to carb ratio here. That's where you could even you know, you could let a blood sugar raise up to, I don't know, 150 and put in, after it stabilizes. Put in like a half a unit or a unit, whatever you think is reasonable to see how far it moves them to give yourself a pretty good idea of what the insulin sensitivity is, right? Like one unit moves me this far. Oh, nice. Yeah, right. And then okay, now you have that now your insulin sensitive is a little closer. And then you look at carb ratio, and you start with things that don't have extra impacts, like you wouldn't try it with french fries, for example, because it has fat in it, but a meal that you feel pretty comfortable understanding, right? As far as the carb count goes, and you and your understanding of what the coverage needs to be for the insulin. So say you, you find that meal, you look at it, you decide, look, I don't know how many carbs are in this, but I know for certain that for units covers this meal really well, it's not going to cause a spike. If I use a certain you know, Pre-Bolus and it's not going to make a low later. So okay, so it's for four units for it, then you go back and count the carbs. And you say I'm making up numbers, right? It's got 40 carbs in it, okay, well, then his insulin to carb ratio is one for 10 because four units covered this 40 carbs or whatever the math ends up being it's four units for 50 carbs, just do the math that way. And then okay, now I'm pretty close on my insulin to carb ratio. Great. Now I have my Basal that my insulin sensitivity my insulin to carb ratio. Now we go back into the loop and try it out and see what happens. And if you see if you see a lot of a lot of unbalanced with the Basal being off all the time, then. Okay, that might tell you, the basil is too strong. If the basil is constantly overworking, it's adding it's adding it's adding maybe you had your basil too weak. You Bolus your Bolus are reasonable Pre-Bolus. You see a spike. It's fine goes 131 40 comes back and goes level. You're pretty much there. You might need you might need a little more maybe Pre-Bolus time in that scenario. But then I think that's just how you work through it. It shouldn't take that long to go through those steps like you should didn't need a month for those steps. Okay, a few days a week. I think that's pretty much it really, like you should be able to get a pretty solid idea after that. But you have to let it run to see. Like, you gotta gotta let it work. You don't I mean,
Jenny 35:14
yeah, yeah, exactly.
Scott Benner 35:17
An example that we just had, like, we just had to had to make some adjustments to Arden's recently, because we got her to college, and her insulin needs changed drastically, like significantly less. Oh, wow. And then we made all the switches to that. And we're like, okay, got it. Perfect. Good. And then four days later, it started going the other direction. Again, I couldn't tell you why it doesn't even seem to matter. And so we started to bring them back slowly, like just kind of crank them in the other direction of being stronger again. And finally, after a week or so, because Arden's not with me, if she was with me, I would have done it much more quickly. But after a week of so because I was doing it remotely, I was like, Screw this, this isn't working, put all your old settings back in. And we put all the old settings back in from before she left for college before she had the experience where she was super low. And everything's working well again. Oh, wow. So a big swing, by the way. For her. It was a big swing in some of those numbers.
Jenny 36:24
Wow. Yeah. Yeah, that's what's uh, yeah, that's what it's hard for me is the variability because I'm like, Yeah, we could figure all this out. And then it could change. And I mean, that's just the game, you know. And I feel like I need to come to some understanding that like, hey, this has diabetes, and it's okay. I was talking to his doctor about my anxiety. And she's like, you know, a working pancreas is making adjustments every minute. You know, she's like, we're trying to be a pancreas. And we can't, and, you know, give yourself some slack.
Scott Benner 36:56
I agree. Yeah, I know.
Jenny 36:57
It's like, I feel like I could get to the point. Like, in my mind, I'm thinking, hey, if I could just get to the point, you know, he's just gonna be cruising between 80 and 120. It's like, if I just do the right things. And I'm like, I don't think that's realistic. You know, like, there's going to be ups and downs every day. Sure. Right. I mean, I don't know, though. But it's, I don't know, though. It seems like Arden's like cruising between 80 and 120. Most of the time, is that right? Or,
Scott Benner 37:23
I mean, art in So art is a girl, and she's got hormones, and she's a lady. So it's not apples to apples, I would tell you that our biggest struggles with Arden are meals that probably have more fat in them. That cause hires late highs later. So fighting through them, when I'm not with her, even over these just first three weeks, have taken more time. When I'm with her, we were close. We were more like he just crushed this right here. But she's on her own. She's still figuring out how to handle that, like, you know, and I also think she's still getting into college. So I think what's happening is she's having these meals later at night, and she's accustomed to eating. Yeah, she's staying up late or doing homework. And her blood sugar is persisting at a higher number. And she's not being as aggressive with it, as she needs to be. And so it's lasting longer, I'd say those are her bigger struggles. Right now at college. It wouldn't have been the same five weeks ago when she was at home. Like her bigger struggles back then were more around. I mean, if a beat Pre-Bolus in remembering to Pre-Bolus was her biggest struggle now. But something about the something about her the pattern she's living in right now she's doing a good job of Pre-Bolus. And she's also using the premium button, which was something I could never get her to do before at home. But now she's seen she's seen the value in that, that she's in school. Nice. So I think it's constantly. I mean, your son's at a at an age where not a lot is going to change about his life over the next couple of years. But for Arden, it's constantly morphing, like, where are the struggles that? Yeah, you don't I mean, but but the settings have to be right. I'm going to tell you right now, if the settings are wrong, the algorithm is useless. And then you're just fighting something that's not knowable. And from listening to you talk now for half an hour. You want this all to make sense and do what it's supposed to do. And if your settings are wrong, that doesn't exist. And now you're trying to figure out something that you don't have. You don't have the right input for so how do you know what's happening next, because you're expecting it to do one thing, but that expectation is built on the settings being correct. Right?
Jenny 39:55
It makes right yeah, yeah. Yeah. And I did want to Talk a little bit more about the fat and protein rises. That's something that's kind of newer to us. Like in the last year, we've been listening to some of your episodes about it. And like we're, you know, saying like, wow, this is a reality. And that is hard for me. Because so I keep like a pretty detailed log about, like, what works for what meal, you know, we have about 10 meals that we mostly do. What usually works, oh, man, there's so much variability, sometimes three units work, sometimes five units work, but after the fact, like the fat and protein rise, like I do not know what to do sometimes, like, I'll, I'll we'll do like this chicken tender and smoothie meal, and I've done it so many times. And it's amazing that I can still mess it up like I, I still mess it up. And so, you know, after the fact, it's, you know, what does this fat and protein rise require? Well, it's sometimes a half unit, sometimes it's two units. And for me to give a unit blindly, like two hours later, it's like, I know this is coming, just give a unit. And I'm like, oh, man, it's so hard for me. And so I start to chase it. I'm like, okay, he's going up, let's give a quarter, it's going up again, let's give a quarter. And was a fat in protein, right? It's like my normal way of bolusing. Like, for correcting that doesn't work. Like he'll be up to 200 in no time. And then, you know, takes hours. So fat and protein rises are hard. You know, I haven't found a great way to deal with them.
Scott Benner 41:32
Well, it's funny, you, you present your problem and answer your problem while you're talking, and then at the end, you say, I don't know what to do. You just, you just told me what to do. But you're not gonna do. You can't, you can't chase the blood sugar, and you have to trust that what you know is going to happen is gonna happen.
Jenny 41:53
Yeah, exactly. And so in the times that I have done it, like it's worked, you know, and I'm like, Jack that work. But then, but get this there are times I've done it, and it's hit me in the ass. And it's like, it didn't work for us.
Scott Benner 42:06
But isn't it easier to stop the low or the fall when it isn't needed than it is to fight with a high?
Jenny 42:13
Oh, it is. But the thing that I hate is like waking him up in the night. Like for juice. I'm like, you know, it's like I can like give insulin all night long. And it's like not waking him up. But I mean, it's harder on me. And you know, and then he's high. And that's not good, either. But, but yeah, you know, the low. The lows are easier than the highest because a sticky high, so hard, and then you're giving insulin at night, which is an ideal, you know, like, too much insulin at night. I'm like, oh,
Scott Benner 42:46
Jennifer, can we talk like friends from it? Yes. Okay. Do you have issues with perfection? In other parts of your life?
Jenny 42:54
No, I'm, like, so relaxed. I'm. So my husband is the perfectionist, and I am the relaxed one. Okay. And it's like, we're having this like switch of things.
Scott Benner 43:05
Is it a switch of things? Or are you and I don't mean to dig into your relationship too far? Or are you trying to accomplish something the way you think he would do it? So that he's happy about it? Yes. I am very good at this journey. Okay. So so, you can't do that. Because you're fighting your own. You're fighting your own nature. You're fighting what you think is right, by trying to apply what you believe he would do. Except your brain doesn't think through things the way his does. So you keep messing it up. Yeah, just do Yeah. Just do me. Yeah, the world is just t shirts, slogans. I don't know how to break this, everybody. Just just follow like your 20 favorite t shirt, slogans and you'll be okay. Like, seriously, you have to trust your own gut. You can't wonder what his guts saying. Because all the decisions that you've made up until this moment, are based on how you would handle this. And then you get to a number that you think your husband is going to be dissatisfied with. And then you suddenly try to shift to what he would do. But you don't actually know what he would do. And it wouldn't matter anyway. Because the first 10 steps were yours. Yeah, ah, J. Okay. Yeah. All right. So, because when if you're not a perfectionist in the rest of life, then like, but you are really you want this to be perfect. You want you want this diabetes thing to be absolutely perfect. I think the best thing you might do for yourself as the is to come to grips with the idea that you're not going to get everything you want here. Like you might get, you might get a lot of it. But yeah, you have to get there's got to be give and take somewhere like you either don't want a 140 blood sugar after a meal or it's okay. And because what happens next like I look at the 140 stays 140 for a little while before When he comes back down, I have to think that's okay. Because if I don't, I'm correcting too late. I'm chasing the blood sugar, forcing it to be low. And then I'm on this roller coaster that's making me crazy. So yeah, you want, you want everything to work. But I'm trying to think this through, you want everything to work. But you're creating problems every 90 minutes for yourself.
Jenny 45:25
Yeah, like keeping him stable for like, a period of time is hard. Like, it's not happening, you know, drunk
Scott Benner 45:32
swerving on the road, you're just going back and forth, and back and forth. It just be comfortable riding on the line on the right. And just be like, Okay, I'm not in the lane, but at least, at least, curving. Because I think you would learn a lot about the management by Oh, I almost cursed. I was gonna say by just leaving it alone for a little while, like letting it be like, yeah, yeah, you're bumping in lodging too much? Yes.
Jenny 46:02
So I think that's a good idea. Maybe just like, let things chill for a little bit get kind of a feel like for what it is going to do? And,
Scott Benner 46:11
yes, that's brilliant. 100%. Yeah, yeah. Because? Because earlier, good. Ed, if
Jenny 46:19
he's getting like a little bit high, while I'm figuring this out, it's okay. You know, right, let's just see this,
Scott Benner 46:25
Oh, please. I sent Arden off to college and a place where she's sleeping by herself. I looked at 170 overnight blood sugars for a week, like making sure we were doing the right thing, because I was like, I can't just get this in the wrong direction and create a low while she's by herself. So let me bring it down more slowly. I wasn't thrilled about it. It's not gonna, it's not gonna ruin her life. Yeah, you said something earlier that I want you to know, would be a huge waste of time, you were like, I want you to go look at all of our records, and try to find trends. But think about that. If you're doing four or five things that you shouldn't be doing, why am I looking for trends in it?
Jenny 47:05
Yeah, that's what I think about looking at the data. I'm like, I don't know what the hell I'm doing. You know.
Scott Benner 47:12
Also, it's because like, you're playing tennis, right? But you show up with a baseball bat, and you're wearing cleats on the court. And then you want me to look at the video and find out why your tennis is bad, your tennis is bad, because you're using a bat and wearing cleats stop doing that. You know what I mean? Like, like, so the I think that's why in my opinion, with this stuff, it's always about going back to the beginning and just sort of starting over again. But you're not, you're not really starting over because you have a lot of guidelines, and you know where you're close. So I don't know, for me, it's get your Basal, right, make sure your insulin sensitivity is good. Make sure make sure your carb ratio is pretty accurate Pre-Bolus that amount of time that you know, gets you as low as possible before the meal without creating a low that needs intervention. And then just letting the then letting the Bolus work and see what happens if you eat something with a bunch of fat or protein in it. You got to do some experimenting, see where it hits? You know, is it 90 minutes after we start eating the YC? The rise from the French fries? And if so, I got a Pre-Bolus that rise a little bit. And if it doesn't happen one time, then I catch it with some fast acting on the other side. But I'd rather be you know, I'd rather stop a lower falling blood sugar than fight with the high one. This podcast is all set up for you. But you're listening to the wrong parts of it. Does that make sense? Yeah, okay. Yeah. This is very interesting. Are you having a good time? Or is this not going the way you hoped? No, no, we're
Jenny 48:41
having a great time. It's great to talk to you like we've been listening to you so much. And I'm like, Wow, I'm talking to Scott. So this is cool. So thank you, please. It's
Scott Benner 48:50
my pleasure. And it's weird that you feel like that. So I can be completely there's probably people listening right now that are like, he didn't know what he's talking about. And, and I might not, but all I know is that settings are very, very important, then yeah, then timing is very important. And then understanding the impacts of different foods is the rest of it. Yeah, yeah.
Jenny 49:15
Then that's where I have a hard time too, because I really do rely on carb ratios a lot. And sometimes they work and sometimes they don't. And so yeah, I've been trying to be more aware of that, like, yeah, how does this food hit him? How does this food hit him? So and
Scott Benner 49:33
I'm sorry, good. Yeah.
Jenny 49:34
Go ahead. Go ahead. No,
Scott Benner 49:35
no, I My question was about you said when your husband's managing him, it goes better. Yeah, but it's the same algorithm and the same settings and the same kid. So what's he doing differently than you're doing? Is he just putting in the right amount of insulin for the meal and not undervaluing the meal? Yeah, Jenny, you don't even have any questions for me? You just wanted to come on and tell me what's going wrong so I can tell you what to do. Oh, yes, I
Jenny 50:01
did. This was an excuse to talk to you.
Scott Benner 50:08
So, so the anxiety hit you earlier when you wrote to me, but I can't get people on fast enough. So it's kind of gone away. So tell me what you did. That's helped lessen it.
Jenny 50:20
So, yeah, I was in a crisis mode, and I just started reaching out. I was like, Okay, I reached out to you. I'm like, I want to talk to the Kung Fu diabetes master and like, you know, get some input from him. I reached out to some moms, I've met a mom recently who she's got, like a nine year old, who was diagnosed when he was two, they're looping, they listened to juicebox. And I'm like, Oh, my gosh, so I want to spend some more time with this family. I, you know, I just want to, I just wanted to spend some time with people who understood, you know, because it's like, I want the world to understand what we do. And they don't you know, what I mean, that's unrealistic for me to want that. But yeah, I reached out to a therapist, I, I actually got on some medication, because it was just not, I just was not doing well. Talk to his doctor, listen to a book about anxiety. And I mean, it's like, I wasn't doing well, personally. And I knew I needed to be. And so I was like, I need to take care of myself. And I need to put some less pressure on myself about this. Because, you know, it's like, he's better. You know, even though I feel like I'm not doing a great job. It's like, it's better that I'm doing it than not doing it. You know what I mean? It's like, I want him to be a happy and healthy kid. And like, you know, a Bolus for lunch. And, you know, I'm just so happy to see him like, eating what he wants, you know, and, and it's like, Hey, I might screw this up. But at least I'm here. You know, do it.
Scott Benner 51:58
Yeah. I it just occurred to me while you were talking, that you're not overreacting, because you don't know what to do. You're overreacting because of the anxiety. Like, like, yeah, yeah. Oh, I see. Okay. I'm sorry. It took me that long to think that way. Oh, are alright, so your husband doesn't feel anxious about it? So he's Yeah. You're like, yeah. And like, like, spread this anxiety around a little bit, given everybody a little bit. So you're, you almost you do know the right thing to do? You can't stop yourself? Because so is the is the answer not to look? What's the what do you mean? Could you just like Bolus for a meal and throw your phone across the room? Well, I
Jenny 52:53
guess I've been experimenting with that. Because I'm like, I don't need to be staring at this number. And so like, I will set like, the alerts at like, 80 and 120. Yeah. And be like, you know, let's just just chill out and like, see what's going to happen. And that's helpful. That's helpful. Actually, you know what I mean? I think some of that work.
Scott Benner 53:12
Yeah. Yeah. No, 1,000,000% Oh, yeah, this is, this is not as much about this isn't as much about this, about the diabetes as it is about you. You're reacting to it too soon. But you can't stop yourself from reacting through since the medication helped? Did it kind of cut the anxiety down a little bit?
Jenny 53:34
Yeah. Like, I feel kind of like I did beforehand. And so I'm hoping it's like a short term fix, like, you know, be on it for a year get myself in a better way and then get off perhaps, you know, um, but yeah, it has helped
Scott Benner 53:47
to the I can't help but to go back to your mom's passing. And say that maybe that this is like subconsciously like you trying to make sure nobody else is sick or dies.
Jenny 54:00
Wow. Maybe like she was a super anxious person. And I'm like, did some of her anxiety like, come to me after she died?
Scott Benner 54:09
was holding it off for you and gave it to you?
Jenny 54:13
Cool. I bet. Yeah. But then, like, some existential stuff came up. It's like, oh, I don't have parents anymore. And like, Oh, I've, I feel like I'm an orphan of the university. Like, you know what I mean, I mean, it was like, a big stuff happens when your parents die,
Scott Benner 54:26
you know, now you're really an adult. Now, I'm
Jenny 54:29
really an adult. And it's like, you know, and I'm taking care of this, this kiddo that needs a lot of, you know, needs a lot of support. And, gosh, I'm just, you know, with this anxiety, it's like, I felt me wanting to make my world smaller with him. I'm like, Oh, you want to go out to McDonald's and like, sometimes it's like, I just don't have the mental bandwidth to do that. I'd like, you know, I'm like, you know, some days I'm feeling better. Some days. I'm not and it's like, you know, I've been wanting, you know, I've been wanting to take them out for an ice cream And I'm like, I need to be mentally ready for this. And we need to be having a good diabetes Day. You know? No, and
Scott Benner 55:07
I didn't think about all those different kinds of extraneous variables that are coming at you because of that. So, okay, so obviously, you can't just give anxiety away, and you can't, you know, calm this can't be given from person to person, like your husband can't just say, leave it alone. But would it be helpful if the two of you did it together? And you just defer to him? To teach yourself that if you didn't react, it would be okay. So the only thing I can think of, yeah, like,
Jenny 55:39
I love the days that we do do it together, because it's like, there really isn't like a back and forth and a give and take and like, I think and this is going to work, I'm thinking this is gonna work. And yeah, like, I feel like better and like, smarter, like when I'm with him, you can
Scott Benner 55:54
trust him like it. Trust the wrong word, but you can take his lead and not let the anxiety overwhelm what he's saying.
Jenny 56:01
Absolutely, yeah. Well, sometimes. It's funny, because he's a little he's, he's more bold than I am. And so like, sometimes he'll be like, let's give insulin on this. And I'm all right. Now, you know, like my buddy's, like, I like I hate Lowe's for some reason, like, I just don't like Lowe's, because he goes low, so often. And sometimes it takes five grounds. And like, I mean, we've dealt with Lowe's, where it's like, 2025 grams, and I'm like, I don't like that. That's more than a juicebox. You know, so. So I I'm like, I'm definitely more comfortable at a high, like, if he's hanging out at 120. I'm like,
Scott Benner 56:41
Jake, I have to tell you calling 120 Hi, I think is part of your problem. Okay, well, thank
Jenny 56:49
you. Yeah, thank
Scott Benner 56:50
you. Yeah, I think I think considering 120 High is definitely part of your problem. Like, well,
Jenny 56:55
would you let like art and just like hang out for six hours at 120? Like,
Scott Benner 57:00
no, it's not high. Right? I wouldn't do that. But I wouldn't cause a low either. Like, I know, I know how to, like, bring it down a little bit without making a problem.
Jenny 57:11
Right? And yeah, they've got looped working with me too. You know, it's like, so it's like, I gotta think of that. So it's like, if I'm giving a quarter, it's like loops already given
Scott Benner 57:20
elutes doing its thing. That is part of the reason why I wondered out loud if the auto Bolus wouldn't be better for you because it would be more immediate.
Jenny 57:29
And so I'm not totally familiar what the auto Bolus branch is or does, then. So I mean, I think my husband does. And we can go into that. But yeah,
Scott Benner 57:39
basically, instead of trying to push the 120 with basil increases, it'll, it'll push it with boluses. So it'll do, I think it comes preset at 60%. Meaning that if it looks at a number, and says, I think you need a unit to move you back to target, it will give 60% of that number.
Jenny 58:00
Oh, interesting. And that makes me nervous. Because I'm like, wow, we're experiencing so many lows right now with that, just like, Yeah, I think aggravate it.
Scott Benner 58:10
I think you're making the lows that Jenny. Yeah, yeah. So so so again, then it would take another reading. And then it would look at its predictive model and say, Okay, well, if I think it needs more, like, say, gave you point six of the one unit expected, right, so now there's point four, it hasn't given yet. If it decides you need more than next reading, it'll only give you 60% of the point for Oh, okay. And then so we've kind of titrate that that way. Because maybe what's happening is you're staring at the 120. And it's pushing basil, which is going to take an hour or two for it to move you back to where you want to be. And so now it's given him enough basil to make to make him stable later, and then you come in and make another unnecessary Bolus. And then it probably then takes away basil trying to stop the following case. Right.
Jenny 59:02
Right. Yeah, that's just a cluster.
Scott Benner 59:07
So I'm terribly sorry, Jake, because anxiety is not something I understand, personally, you know, like from a personal experience, but I have spoken to enough people that I do get how it impacts people. And you had none of this prior, or you had some of it, but it's worse.
Jenny 59:25
I had some of it, but it's like it, man. It just came on, like 1010 times worse. Like, I'm like, I have not experienced this. Like I would rate my anxiety every day. I'm like, how am I feeling today? I'm like, Man, my anxiety is an eight today and that was happening a lot. You know, now my anxiety is like, you know, I don't know 234 I do get nervous around Bolus time still, like, you know, it's like, I'm gonna be Bolus thing for lunch soon. And it's just like, ah, it just makes me nervous. And you know, it's like, I just don't want to just I just don't want to miss the mark. I just want to like, have it like just be the right amount. And it's
Scott Benner 1:00:05
because if you don't, then that's another anxiety inducing moment.
Jenny 1:00:10
Totally, totally. And part of it feels like Man, I've been doing this for seven years. It's like, shouldn't I be better at this? Which makes
Scott Benner 1:00:17
you feel anxious that you're never gonna figure it out? Yeah. Oh my god. Yeah, you're caught? No, it's a death spiral.
Jenny 1:00:23
Yeah, so I think like, if I can just like, keep listening to the podcast, and it does help me to hear like the stories and hear people talk about it. I don't feel so alone. And like, I love like, the really specific things like, Hey, here's how you Bolus for fat and protein. And yeah, you know, here's some really practical tips. It's like, so helpful and talking to other moms. And, you know, and just like relaxing a little around it, because it's like, yeah, he's got a disease, and it's diabetes, and there's going to be ups and downs. And it's like, his blood sugar is not going to be chillin at 90, like all the time. And that is okay.
Scott Benner 1:01:00
I think I think that's what I wanted to say to you earlier than I never ended up saying, which is you? It sucks, but it does have diabetes. So your your goal for your goal changes significantly plus before diabetes, you were never aware of what his blood sugar was. Yeah, you had no idea. And you never thought about it. So it wasn't something to be concerned with. You never thought about what he ate or didn't eat, or how long it was before, etc. Like, none of this existed in your life. And now suddenly, it's all here. And you kept your expectations where they were, but the game changed a little bit.
Jenny 1:01:38
Yeah, totally. And I think like when he was diagnosed, I thought, because they were like, he can have he can eat anything he wants. You just have to dose for it. They did. They did say stay away from sugar, or I'm sorry, stay away from syrup, and pop. And I'm like, well, that's make sense. But it's like he can have anything he wants. And he can do anything he wants. And I was like, yeah. And then like as time goes on, and as I'm learning more, I'm like, I mean, he can eat what he wants. But it's like there's repercussions. You know what I mean? It's like, we can't have pizza at 10 o'clock at night. I mean, we could, you know, but do I want to deal with that? We can do anything, but it's like, how much mental effort is it going to take to manage diabetes when we're doing it? Yeah.
Scott Benner 1:02:27
Because its impact on you is different than its impact on me and other people. So when you think about pizza at 10 o'clock, as an example, is it you get anxious right away, you start to cry? Like, like just talking about it? Like, are you are you upset because you're letting him down? You think that he can't eat pizza? Are you upset thinking about oh, I'm going to be up all night with this, like, what part jumps into your head first?
Jenny 1:02:51
Well, part of it is like so like, I love food. And to me food equals love. You know what I mean? It's like, I want to give you what, what you want. And so I'm sad about that. I'm like, he'll, you know, he'll text me that, hey, we're having a snack at school. And I'm like, I don't know how to Bolus for that right now. So like, I don't say that, but you know what I mean? Hey, save it for, save it for after school or save up for lunch. So there's like this emotional part of it.
Scott Benner 1:03:26
You feel like you're not giving him something that he deserves.
Jenny 1:03:30
Yeah, it's like, yeah, so there's that emotional part. And then part of it is like, oh, man, I'm gonna be dealing with the repercussions of this later. So, yeah, I was, I was brave the other week, and I like he wanted pizza. And I'm like, let's order pizza. We never ordered pizza at night. And I had an idea of what was gonna happen and, like, the meal went well. And then, like, I just wasn't aggressive enough at night. And it hit me in the butt. And I'm like, okay, you know, we can I don't know, sometimes I just want to stay away from that kind of stuff. And sometimes I'm, I want to do it again. So I can learn because the more we do it, the more I learned how to do it. You know?
Scott Benner 1:04:15
No, I understand. I really do. I wish there's this moment here where I wish you could feel like the way someone feels. Who doesn't have anxiety who would still be upset by this, but not driven to the place where you are, like, I have felt the way you felt. I felt like oh my god, please. No one like who just ordered Chinese food. Like, seriously, which one of you mother her said, we should get Chinese food kill you all, you know, like and then but I can let that go. And I you know, as I was younger, I would have just attributed that to like, I'm a guy, but and maybe there's some of that that's true, but I I don't feel anxious the way you do. So like even though I know Oh, God is Chinese. I'm going I have to figure this out. It might not go right, it might cause a problem later, I'm able to blissfully ignore even what's two hours in front of me. Maybe it is because I'm a boy. I'm just like, it'll probably be fine. If it's really that is the biggest difference between men and women, isn't it like guys, it'll likely work out. And if it doesn't, we'll just hit something or kill something, whatever we got to do. And and women are like, I need this to go right. And you have all that mom guilt on top of it, by the way, which Yeah, but
Jenny 1:05:34
like, I'm tired the boot like, even though we're looping, it's like, I'm still up a lot in the night. And like, we're one of those people and I, I'm getting the impression that Dexcom you know, it's awesome. I think it works great on some people. And I think it doesn't work as well on some people. And like, I think he's one of them where it doesn't work great, especially at night, because I'll get a lot of false lows. And like if I get a low alert at night, which is often and I test him, he's not really low. So crashing low. It's a compression low. And it's also, I don't know, Have you have you run into this? Have you seen this where it's like Dexcom just doesn't like work as well, on some people, like, we get a lot of ups and downs, we get a lot of false readings, we get a lot of sensor errors. It's rare that his Dexcom will last the full 10 days. And even when we were on the previous Dexcom. Like it lasted seven days, I think it was rare that it would last seven days. Like it's just
Scott Benner 1:06:33
so I don't know if that's some sort of user error. Or if it's a camera body chemistry thing. Like I don't
Jenny 1:06:39
think it's a body chemistry thing, because I had like a Dex person even come out to the house at one point. And I'm like, Okay, this is how I'm putting it on. What do you think? And he's like, you're doing it right? And I'm like,
Scott Benner 1:06:50
What about hydration? Is he really properly hydrated? Well, that's
Jenny 1:06:54
one, that's one thing that has come up, and I tried to have him drink, you know, as much as I can. And he's probably not as hydrated as he could be. So that's always something I'm thinking about.
Scott Benner 1:07:04
I mean, if you if you could push, like real serious hydrate, like not like don't float his kidneys away or anything like that. But like, you know, keep him really hydrated for a week. And see if that if that helps. Because that really could that really could be it. Because yeah, it's it's reading interstitial fluid, right? It's not reading your blood. If you're dehydrated, that fluids not flowing properly, and you're getting, you know, it's almost like a it's like a compression low in that, you know, you're not getting a proper reading because the glucose isn't being distributed evenly in that flat. So you can't you're not seeing that. I think, if you're putting it on correctly, etc. I think making a real concerted effort around hydration would give you an answer as to whether or not that's your issue or not, may give you something, and it might give you something to focus on to Jenny. Right. That poor kid, I already see his eyes filling up with water, just like keep drinking. But I think you're smart, too. I know we're up on an hour already. But I think you're smart too. I mean, after listening to you completely. I think working on yourself and trying to minimize your anxiety is probably like, step one, a one b in this. Like you can go back and look at his settings. But I might just try, like tying my hands behind my back for a couple of days first. Yeah, just yeah. Just let it let it go. Because it sounds like when your husband does it, it works. So that would indicate to me that the settings are right. I don't think it's that he knows something you don't know. I think it's almost that he's not. He's not touching it as much as you are like, You know how some pots need to be stirred. And some recipes tell you like leave it alone. I think you're I think you're saying I think you're staring the thing that's supposed to be simmering. That's all Yeah. Yeah.
Jenny 1:08:59
Interesting. Yeah. And how many interventions are you doing with art in a day? Like, is it like, you're not? Or you know, when she was with you?
Scott Benner 1:09:08
Like how many times I talked to her? Yeah, hardly ever. So really?
Jenny 1:09:12
Yeah. Well, I've heard you say you think about diabetes 10 minutes a day. And I'm like, That is amazing. Like, there are 10 minutes. I'm not thinking about it, you know, and so it's like, I'm
Scott Benner 1:09:21
not trying to keep her blood sugar at 95 constantly. So
Jenny 1:09:25
you're letting it ride and like you're seeing like ups and downs, but it's you know, I mean, it's in a good way, just letting it ride.
Scott Benner 1:09:32
Here's an example. She goes to class this morning. And she's at the end of a site. It's um, pumps got like 30 units left. And so we're pretty much on the end of like, 72 hours coming up on it. And I don't know what happens she doesn't eat in the morning. I don't see a Bolus on Nightscout anywhere. So she heads out the door goes to school, she's in a room and then she starts experiencing a rise and I let the If I let it Bolus it does the micro Bolus is micro Bolus micro Bolus, and it was having trouble getting ahead of it. And I think she got I can look and tell you, because I think maybe you knowing this would be really helpful for you. So here, we turn it sideways, so I can look at a little better. So she's doing like all morning, between, like at 730 to 10. She's between like 107, and 120. But the way I think of that is, is that she's out of bed, she's in college, she has not thought about having diabetes wants for two hours, would it be cool if she was 10 points lower, it would be. And I might make an adjustment to get that. But like I said, we're still dialing in college. So right around 10 o'clock, the 107 turns into 112, that turns into 117 that all of a sudden hits 124. And that's and now this thing's micro Bolus and already, but it took it from 10am until 1056, to put a stop to the rise. And in that time, she went from that 120 to 185. And then over the next hour, it brought her back again. And so and so by noon, she's 95. And I think that doing this for so long, and watching art and grow from a person who was 10 years old, who was with me constantly, and I was able to be very, very, like hands on. I don't I don't think this is terrible. This wasn't food. This was probably adrenaline or anxiety or something. She's in class trying to learn something new. And what this what this graph says to me is that from 8am, I'm looking at a six hour graph right now from 8am. Until 12:51pm I don't see that Arden ever thought about diabetes. And her blood sugar spiked to 180 for 30 minutes and the other 30 minutes was the rise. The other 30 minutes was the fall. So over two hours, there was a rise a spike in a fall. And she still hadn't thought about it. The algorithm took care of everything. She's the first time I hadn't thought about diabetes was around. I'm guessing by what I'm looking at. I'm gonna guess she ate about an hour ago or let me say
Yeah, looks like looks like she had a snack somewhere. It's the first time she's probably thought about her insulin in seven hours. And I just think that that's as important as our blood sugar. Beet. Yeah,
Jenny 1:12:44
absolutely. And so like, is she getting a high alert and like so she's so you're letting Lupe do its thing with auto boluses. And like, you know, she's not getting an alert at like 150 or whatever. And I need to give myself a quarter
Scott Benner 1:13:01
your delightful she gets the alert. She probably mutes her phone. In school, and she doesn't want to do it.
Jenny 1:13:09
Right, right. Okay, so
Scott Benner 1:13:13
completely up, then I would intervene and be like, Hey, you got to look at this thing. And then that's it. But instead of all I've done is I sent her a text today saying hey, at the end of a an infusion site. Sometimes the algorithm might need your help. Meaning Oh, gotcha, meaning that this thing's Bolus thing is little last off, and it can't stop you at all. 186. It's probably because the site's a little older. And it's only bolusing 60% of the time. So that was my way of saying to her if you would have intervened here and just put in the extra insulin even that it wanted that it can't do because it's listed it because it's limited at 60%. That would probably be a good idea. But I didn't say it to her, so that she would do it. I set it to her so she would learn it.
Jenny 1:14:01
Yeah. And so if you were with her, would you have given her a Bolus? Yeah.
Scott Benner 1:14:05
100% you would have Okay, right. But I'm an adult, and I'm paying attention and I'm not going to college and etc. But the fact that it didn't happen is not causing me any Arjuna. Yeah, that's where you're getting stuck. Is that like, yeah,
Jenny 1:14:23
yeah. And I love that you're thinking about it, like, Hey, she's in school. It's like, this is important that she doesn't need to be bothered with this loop is taking care of this
Scott Benner 1:14:34
variable. Yeah, there's my definition of perfect changes because her situation has changed. Yeah, that's all yeah, that's all you were fighting against anxiety. And I run the risk of sounding sexist here, but I'm just gonna say it anyway. Sometimes ladies want everything. Ever notice that? Like, there's no ability to go Alright, I've got 10 Things I need if I get eight of them good day. It's like I say to my wife, sometimes, you're still mad at me for the first thing I ever did wrong 30 years ago, maybe it's time to let that go. So there's some things you just have to with diabetes, you just have to be like, you have to find the balance between not letting everything get terrible. And not and not overthinking every little thing that might not matter in the long run. And take some comfort from this. And Jenny, I have to go in a second. But I'm not saying that poor health is okay. Right. But there are plenty of people who come on this podcast and say, Look, I grew up through regular and mph, and I'm 55 years old. And I don't have any ill effects from diabetes.
Jenny 1:15:48
Yes. And yes, it's like, yeah, they weren't. Yeah, what we have now is amazing. And like, we're doing a great job. And it's like, you know, having a little variability. Wow, just I think, yeah, just relaxing a bit is gonna help me so if you
Scott Benner 1:16:05
and I were friends, and I didn't know any of your details, I'd be like, Jenny, you gotta calm down.
Jenny 1:16:11
Yes, I need to calm down.
Scott Benner 1:16:15
It's pretty much what I would think. And, and I would, I would adjust my ideas of what perfect looks like, okay, and, and probably try to look over your husband's shoulder and see what he's doing and more more, probably specifically, what he's not doing. Yeah, that's it. This is what I have figured out in an hour and 14 minutes. You're,
Jenny 1:16:36
you're amazing. You're amazing. Thank you so much. And we just love and appreciate you so much. So I can't
Scott Benner 1:16:42
I can't thank you enough for having this conversation. Because this is really important. A lot of people feel the way you feel. Not a lot of people are as honest about it when they come on. So this was well done by you. Thank you very much.
Jenny 1:16:54
Awesome. Well thank you
Scott Benner 1:17:04
first, I'd like to thank Jenny for coming on the show today and being so honest and talking through her issues. And I'd like to thank us Med and remind you that you can get the FreeStyle Libre three right now at us med.com forward slash juice box or call 888-721-1514. Looking for a great night out the 22nd annual dancing for diabetes showcase will take place on Saturday, November 5 at 7pm at the Dr. Phillips Center for the Performing Arts in Orlando, Florida, touched by type one.org to get tickets. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
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