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Episode 66 - Your Biggest T1D Fears
240 Plays1 month ago
Raquel & Amanda go through your submissions of biggest diabetes fears and share their perspectives on each one. These are all such real fears and it can be so tough to let them go! Even so, there are ways we can work through them to at least lessen their impact on our day to day life.
Raquel is currently in a contracted agreement with Tandem Diabetes.
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Transcript
Navigating Daily Diabetes Challenges
00:00:23
amanda
Hi everybody.
00:00:25
amandacberg
Hello.
00:00:26
amanda
How are we doing?
00:00:27
amandacberg
I am all right. I had an annoying diabetes night, but there seems to be a lot of those lately.
00:00:34
amandacberg
How are you?
00:00:35
amanda
of Yeah, I'm fine. We were kind of talking about it beforehand. I mean, I guess I can talk about it on the podcast a little bit before we dive in yesterday. So we're recording this on a Thursday, October 10th. And yesterday, the director of nursing for San Diego Unified called me and said that they are actually going to be doing a pilot study.
00:01:01
amanda
um at my daughter's elementary school with an ipad in the health office and she was like you know we're still going to keep the alarms on in the classroom and we still think the person who like is looking at the child should be responsible but we are going to trial this because it seems like that's where everyone's heading and and no i'm going to take the high road i'm just not going to say anything right now
00:01:22
amandacberg
yeah
00:01:25
amandacberg
You're doing great.
School-Based Diabetes Management Innovations
00:01:26
amanda
And um I was like, okay, that's awesome. you know And then she was like, your super detailed addendum orders that are the most recent ones that we said we had to like go clarify. We all agree those are too much. And I was like, okay, well, I would like to clarify something for a second, but Because no one was following my daughter and because diabetes is so volatile in her little body because she's so unpredictable, I was instructed to create hyper-specific orders like that in order to make sure that if I called in and said, hey, this is what I'm seeing, this is what should be done, the nurses could technically
00:02:09
amanda
do those things like within policy guidelines. So I just want to put that on the table.
Enhancing Communication with School Nurses
00:02:15
amanda
And she like didn't really acknowledge that, which is fine. but um And I was like, I'm fine with the standard orders because that was another thing she said is like we all agreed that the standard orders that currently exist like work the best for school. And I'm like, I'm fine with that.
00:02:32
amanda
And I literally said, if my daughter is 73, 71, 67, treat it 67. That's not a significant low. That's not a huge drop. She's safe. She's fine. If she is 175, 50, no. The drop from 100 to 75 needs to be addressed in that moment and not when she's at 50.
00:02:53
amanda
And she was kind of like, all right, we'll just talk to the school nurse and the cluster nurse about like how to word
Parental Involvement in School Diabetes Policy
00:03:01
amanda
orders for that. um So yeah, sorry, there's my garden is here.
00:03:07
amanda
I don't know if you can hear it or not.
00:03:08
amandacberg
I can never hear them now.
00:03:09
amanda
Okay, good, good, good. Then I'll just keep going. So we talked about that and then I said, like you know I also am curious about like texting communication and if we can get something like that set up on the iPad. And she was like, that makes me really nervous because I don't want there to be like this expectation that the iPad is constantly monitored. And I was like, we are reasonable people. We've never expected constant monitoring.
00:03:39
amanda
And the texting would absolutely not be like I send a text and expect a response back immediately in that moment. What needs to happen though is we need to share context both from like our perspective of what's happening at home and we would like context from the school.
00:03:58
amanda
An example is if she gets dosed for lunch and then I notice after lunch that she's jumping by 20 or 30 every five minutes, I want to be able to text them and say, hey, noticing this is happening. I'm curious what she was dosed for, what she ate, and I want that information so that my husband and I can make adjustments on our own at home so that the school day is easier for you guys moving forward. And I think she was like, okay. She was like, well, I guess I would be fine with that if you can figure out some sort of like email, like a texting system that goes through their email or something. and I was like, okay, that's fine.
00:04:38
amanda
um And I'm trying to think if there's, I don't know, anything else. the Oh, the parent guidance stuff. I was like, and what about the ability to call and like offer guidance? And she was like, well, that's California ed code that we just can't do that. And I was like, okay.
00:04:56
amanda
you know It's just like that like, I'm just not gonna fight that.
00:04:57
amandacberg
Yeah.
00:05:00
amanda
like The DOJ case is opened. i Someone has explained to me that like once it's once it's been like filed and they they, I shouldn't have said the DOJ case is opened, because it's not in California.
00:05:13
amanda
But once it's been filed and is taken seriously, it does get opened regardless of if the school has already like done something. And they do that in an effort to establish like policy and legislation and stuff.
00:05:26
amanda
So I'm just hoping that the DOJ filing results in like a parent should be able to with diabetic care offer guidance.
00:05:36
amanda
So anyway, yeah, that was all that.
00:05:37
amandacberg
It has to.
00:05:40
amanda
But um yeah, just school
00:05:42
amandacberg
Good
Diabetes-Related Fears and Emergency Preparedness
00:05:43
amandacberg
updates. Finally, good updates, which is so exciting.
00:05:43
amanda
stuff.
00:05:46
amanda
Oh, finally. Yes.
00:05:48
amandacberg
Yes.
00:05:48
amanda
All right. um Today is a discussion on diabetes fears.
00:05:55
amandacberg
Yeah. We had everyone submit your biggest diabetes fears on our Instagram stories. And it was really interesting reading through them because a lot of them are the same. There's probably over a hundred responses and we all at the end of the day are worried about the same things, which in a weird way is kind of comforting. Like you're definitely not alone, but I'm hoping that after this episode we can hopefully ease some of the fears because I think A lot of us tend to think like really worst case scenario and it you know a lot of these things aren't likely to happen or there's things we can do to prevent them from happening and to give ourselves peace of mind. So let's go through some of them.
00:06:34
amanda
Sweet. Okay. I'm going to let you start.
00:06:37
amandacberg
Okay, which one should we start with? Well, okay. I think a very common one was your child surviving a natural disaster, or not natural necessarily, just a disaster in general, or an emergency and not being able to access insulin when you need it. And I have been thinking about this a lot with all the hurricanes going on, and I don't think I've thought about it a lot in my life, weirdly enough, but this all happening now has made me want to put together an emergency kit, which you might have. Do you have one already?
00:07:10
amanda
I don't, I at some point went and like moved a bunch of supplies into my daughter's bedroom um in like a preparedness state of if there's an earthquake in the night, then hopefully we could like shove ourselves into her bedroom and at least have some supplies there.
00:07:18
amandacberg
That's great.
00:07:31
amanda
But um no, I don't.
00:07:36
amandacberg
I think that would actually be a great thing for us to make, and we can maybe even make a video and like make it into content too to help other people, but um I got to do it because it's one of those things that you always say, oh, one day I'll put this together, but it's like this could happen any second.
Community Support and Technology in Diabetes Management
00:07:50
amanda
Yeah.
00:07:50
amandacberg
But at the same time, I think it's really challenging because insulin generally needs to be refrigerated. you know, I guess you could just grab that from the fridge and run. But like, how much stuff do you want to put in this emergency kit?
00:08:03
amandacberg
Like, I'd probably want to just take all the diabetes supplies I have with me in that moment.
00:08:07
amanda
yeah
00:08:08
amandacberg
um But how do you kind of, I don't know, like, let go of some of the fear around this?
00:08:15
amanda
This is a tricky one and it's actually something that I feel very lucky to say that like this is a hard conversation because people are not as lucky as we are but eight you know like up until this point where I was three years in now I have never been nervous about running out of insulin and I actually right now kind of am because we switched insurances and things are a little weird.
00:08:47
amanda
The insurance is no longer filling vials and only the pens. So in the years, the past few years, we used to be able to stockpile vials and pens.
00:08:52
amandacberg
Hmm.
00:08:59
amandacberg
Yeah.
00:08:59
amanda
And once they like stopped covering the vials because both vials and pens are ordered, then it became a little more, and and as my daughter's growing and her needs are increasing, it became more and more like, oh, we're starting to run out. So I actually have one pen left and I'm due to pick up our next set of five pens.
00:09:21
amanda
um like in a ah couple days so I feel safe right now but um I don't know I haven't I haven't I personally have not let myself really think too much about it because it's very scary and overwhelming I have let myself quickly go to If something like this happens, we do have Lantis left over that's stockpiled. It's expired, but I'm keeping it because
00:09:53
amanda
you know, like, it could still work if needed. And I think to myself, like, I would give her a dose of long acting and we would just like deal with highs. And then like on the flip side, if we are in like some weird random disaster for 24 24 hours or something, I would basically like back way like go into manual mode and back way off on the insulin that's being given through her pump um and try and keep her kind of steady 180 180 to 220 or something like that. you know
00:10:32
amandacberg
yeah i actually don't have pens i rarely do i just have vials right now and i want to ask my doctor to get some but then whenever i do get them and i don't end up using them i feel guilty about having this insulin that doesn't get used but then i feel like i should have as a backup it's like a weird
00:10:45
amanda
yeah
00:10:47
amandacberg
thing. um But I will say we've had so many people reaching out to our Instagram asking like, how can we help the people that are affected by the hurricanes right now.
00:10:59
amandacberg
And we haven't had anyone actually asking for things and I haven't really found a place to send things to so I don't have all the answers if you're listening to this. um But my point is that the community really comes together for every single thing that I've
00:11:10
amanda
yeah
00:11:13
amandacberg
seen happen over the last 10 years that I've been online. And so there is that. I mean, people really want to help. And if anyone ever needed insulin, I would definitely share some. And I also know that personally, you and I are both really lucky for being so connected in the diabetes space.
00:11:28
amandacberg
It gives me a lot of peace of mind that if we needed something, we'd be able to get it. um But it's scary. I will say this is one that's like a little tricky.
00:11:35
amanda
Yeah. it's yeah It's super tricky. It's a very real fear. And I think at the end of the day, it's like you can't live your life in fear and just kind of being aware and and doing um doing what you can to be at least a little bit prepared
Doctor Conversations on Diabetes Emergency Supplies
00:11:56
amanda
for it. So if you do live in a part of the country that gets hit by hurricanes or tornadoes or
00:12:04
amanda
or, you know, whatever, some sort of like scary natural disaster, maybe having that conversation with your child's endocrinologist of like, how, how do I make sure that I've got backup supplies for things like this?
00:12:19
amandacberg
Yeah, I was also realizing last night that I'm on the Moby now, which is amazing. And I love it so much. I mean, even with the other pumps, you still have to charge them at some point, right? And so having a lot of backup and ready to go portable chargers, or just having a bunch of syringes that if you need to go back to that too, and you don't have all the pens and whatnot, you can still do shots.
Understanding and Mitigating Low Blood Sugar Risks
00:12:39
amanda
Yeah.
00:12:40
amandacberg
That's kind of a wild thing about the the technological world that we're in with diabetes now.
00:12:44
amanda
I know. I know it is.
00:12:47
amandacberg
It's good.
00:12:47
amanda
Yeah.
00:12:48
amandacberg
Okay.
00:12:49
amanda
All right.
00:12:50
amandacberg
Let's see. What are you thinking?
00:12:52
amanda
um the my daughter going low in her sleep losing consciousness and no one hearing alarms this is such a heavy one and it is so real and i think it's like the probably the number one fear for
00:12:58
amandacberg
Yep.
00:13:08
amanda
probably all people who are affected by type 1 diabetes but certainly parents who bring home children from the hospital. And I think that the fear is so real and significant and all-encompassing and suffocating because of the way lows are explained in the hospital and I wish that there was a balance to be able to explain the significance of lows and and talk about the reality of it while also explaining but they happen and lows are all lows are different and it's all about context and like
00:13:47
amanda
Like any type 1 diabetic should have the access to a continuous monitor if they want one, day one, the second they're diagnosed because that's just such valuable information. And so I am so grateful we did not have to do only finger pricks. I would not have slept. I would have been up every hour doing a finger prick. It's just like miserable, but I think that the way I got past this fear was really learning which lows are significant and which lows are no big deal. An example of that is last night. She started going low, but she only hit like 68. And instead of jumping up and doing something about it,
00:14:38
amanda
I knew that there was just not enough insulin on board. Maybe it could have been one of those weird nights, but it was like, she was 70, 71, 70, 71, 69, 69, 70, 69, 68, 69, 70, 72, 74, you know?
00:14:53
amandacberg
Yeah.
00:14:56
amanda
So I was just like, that's not a big deal. But if it was, if I heard the alarm go off and it's three in the morning and then I see the graph and it's like,
00:14:59
amandacberg
yeah
00:15:06
amanda
down five or down 10, yeah, I'm going to get up and go treat that. um And I think knowing the difference between those has been really helpful. And then the other thing is just knowing yourself and like how hard of a sleeper you are and then investing in the technology um that's available to ensure that you wake up like a sugar pixel or a glucose or, you know, whatever else is on there.
00:15:35
amandacberg
Sorry, the dogs are barking. um But the sugar pixel i is definitely going to bring that up because ah yes, they do have the alarms, but they also have the little like wire that will go under your pillow and buzz, which can help.
00:15:50
amandacberg
like either wake up your child or use the parents and like those alarms are so loud that you can't really miss them. um So there's that I think for me like I guess from the perspective of growing up with it I've had this fear my whole life right of me not waking up and a lot of the pressure was on myself for many years, not that my mom would have ever wanted that, but there was no Dexcom.
00:16:15
amanda
Yeah.
00:16:15
amandacberg
So it was up to me to wake myself up. And she would listen for any little thing. If I was crying, I often would have nightmares when I was low and she would come in and check. I mean, she did everything she possibly could have, but ultimately like it was me, right? So it used to be a bigger thing. Um, eventually I started trusting myself the more that I would wake myself up for lows. And so if you have a child who feels their lows and they are able to wake up at some point, like I don't know it's just I tried to believe that if I've done it before I can do it again and I will continue to wake myself up but also I have such a different perspective on it I think because I went from no technology to having technology that now I just feel like I have everything I need to be safe and
00:17:00
amandacberg
you know, I have the Dexcom and it'll beep at me. I often wear my Apple watch to sleep now and it will buzz and that's really helpful.
00:17:07
amandacberg
I also have my Moby that I like kind of wear in my waistband pocket area when I sleep and that also vibrates. And so I just feel like I have all of these things. And then I also have people following me if I really needed it.
00:17:07
amanda
Mm hmm.
00:17:20
amandacberg
Um, I will say like whenever I babysat kids overnight, it is like a different, kind of fear. Um, I think I have a lot more concerns about like, well, what if the Dexcom is not accurate and like it says they're 70, but really they are 50 or whatever.
00:17:35
amandacberg
So I get that. But I also know there's so many people living with diabetes who don't feel their lows and don't wake up like I do. And they can't fall asleep because they're terrified.
00:17:41
amanda
yeah
00:17:42
amandacberg
So, um, Yeah, I just I really think there's a lot of technology that we can try to use even um sugar mate right that will call you like you can set up all the things that there's so much.
00:17:45
amanda
Yeah.
00:17:54
amandacberg
I even have a friend whose husband created a way for their lights to turn on whenever
00:17:59
amanda
Oh
00:18:00
amandacberg
they go low.
00:18:02
amanda
my gosh.
00:18:02
amandacberg
And he like did some weird coding thing. He's trying to get it to be available to the public. Maybe we'll have him on one day. But um there's things that can be done, I think. And technology is only getting better.
00:18:12
amandacberg
Plus, the pumps suspend insulin now. So if you are in a pump, I mean, I used to have lows multiple times a week in the middle of the night. And now I just don't.
00:18:20
amanda
Yeah.
00:18:20
amandacberg
It's maybe once every couple of weeks or this week, a couple of times this week.
00:18:24
amanda
hello I'm curious, did you start to feel your lows like almost right away when you were diagnosed?
00:18:24
amandacberg
But that's more rare. So again, there's just so much more in place. And I'm so thankful for it.
00:18:36
amanda
Because I just, I'm doing my very best to try and like make Hattie aware of what's happening in her body, especially when it's a finger poke, because sometimes when it's like she's 60 and that's the Dexcom and I'm giving her something, I'm like, do you feel alone?
00:18:43
amandacberg
yeah
00:18:54
amanda
She's like, no, don't feel anything. I'm gonna go sprint some more. I'm like, uh, you know, it's next comment. I don't know, whatever. But if I like do a finger prick and I'm like, ah, girly, you are 48, you are 52.
00:19:05
amanda
Do you feel that? She's still like, no, I don't feel anything.
00:19:08
amandacberg
No. Yeah. I wonder if it's really her not feeling it or if it's just that she hasn't been able to make the connection of what that feels like because there's so many different feelings in your body already, especially as a kid when there's so much happening.
00:19:20
amanda
Yeah.
00:19:22
amandacberg
I don't think I felt them right away, but I think I felt them relatively like I should ask my mom about this, but probably when I was like six, seven, eight, like I was starting to feel, you know, um,
00:19:34
amanda
Yeah, she there will be sometimes I feel like the really significant ones where like the fast drops or when you're just like starving, you know, like, I know she can feel those.
00:19:39
amandacberg
the drops, the fast drops.
00:19:45
amandacberg
Yeah.
00:19:49
amandacberg
Mm-hmm.
00:19:50
amanda
But I don't want but those to be the only one she can.
00:19:54
amandacberg
Yeah, well, yeah. And some lows I still will, like the Dexcom will say I'm 65 and I'm like, I don't feel low. Like it's not like every single low I feel that way too.
00:20:03
amanda
Yeah. Yeah.
00:20:04
amandacberg
So that might never change.
00:20:04
amanda
And, and I will say there are a lot of times a lot where I'm like, Hey, this is saying that you are low. Do you feel it? And she, and I'll say like, do here's a low snack or whatever.
00:20:17
amanda
And she's like, I really don't want it. Can you do a finger prick? Cause I'm pretty sure I'm not. And she's ah a hundred percent with that. Like she is always right.
00:20:27
amandacberg
She's on. So that means she does feel something.
00:20:28
amanda
Oh,
00:20:29
amandacberg
Yeah, it might just be that she hasn't connected the low feeling to what it really is, or she doesn't want to be low. So she's saying she doesn't feel, you know what I mean?
00:20:37
amanda
Yeah.
00:20:37
amandacberg
There can be a mix of things there with her age, for sure.
00:20:40
amanda
Yeah.
00:20:40
amandacberg
um
00:20:41
amanda
The age is so hard and I love all the comments that are like, teach her how to feel her own body. I'm like, what do you think I'm doing?
00:20:47
amandacberg
What?
00:20:48
amanda
Just like not ever.
00:20:48
amandacberg
Yeah.
00:20:50
amanda
Of course I'm trying to teach her, but like you come over and force a four-year-old to say, yes, I feel shaky and breathless and tired, mommy. Like what? Shut up.
00:21:00
amandacberg
It's so was stupid.
00:21:00
amanda
Bugs me so much.
00:21:02
amandacberg
Me too. Yeah, we just have to ignore those. um But yeah, I do think like you have to let it go at some point and just remember that you're worrying about it isn't going to change what's happening.
00:21:15
amandacberg
And we do the best we can.
00:21:15
amanda
Yeah.
00:21:17
amandacberg
And hopefully you have safeguards in place to keep everyone safe. And I think it's really, really rare for something like this to actually happen.
Transitioning Diabetes Responsibility to Children
00:21:25
amanda
Yeah, true. All right. What's the next one?
00:21:30
amandacberg
Um, let's talk about a big one very common was the idea of like handing off diabetes to your child one day and giving them all of that responsibility. And also like, will they want to take it on? Will they be burnt out in the future and not take care of themselves? you worry about this?
00:21:52
amanda
Um, I'm going to be really honest for a second. ah Do I even say this out loud? For the most part, obviously, I wish I could take it away from her. I would do anything for it to be me. I would do anything for her to never feel a poke another day for the rest of her life. And then there's a small part of me that's like kind of really excited to not have to think about it anymore.
00:22:18
amandacberg
Amanda, obviously, I'm jealous.
00:22:20
amanda
Like that's horrible. That's horrible.
00:22:23
amandacberg
How is that horrible? I'm so jealous.
00:22:24
amanda
It's, it's horrible because it's my sweet child.
00:22:27
amandacberg
in
00:22:31
amanda
Like you as a parent are supposed to always want to take it on and like, yes, I would in a second. If some fairy came up to me right this second and said, you have diabetes instead of your daughter, I'd be like, great.
00:22:38
amandacberg
You would.
00:22:44
amanda
What do I have to do? Like, but. I am not necessarily fearful right now and maybe it's just because we're three years in and I like have seen the progression. I've seen how amazing she is with it and how like my husband and I are doing everything we can so that it feels very background to her as much as possible and so I'm hoping that as she gets older the technology gets so much better and she becomes so in tune with counting carbs and guessing and just like it's very automatic you know.
00:23:21
amandacberg
Yeah.
00:23:21
amanda
um So I'm hoping, I know that burnout is inevitable for her, because it's just, it's inevitable for everybody.
00:23:31
amandacberg
Right.
00:23:31
amanda
But I'm hoping it will be to a lesser degree than other people have experienced it in the past or even right now. And no, I'm not. No, i I just don't, I don't see, I see my girl being very like, ah whatever. I don't want to talk about diabetes or think about it, but I don't ever see her like
00:23:52
amandacberg
not taking care of it.
00:23:53
amanda
not taking care of it. I don't see her ever like not giving herself insulin.
00:23:56
amandacberg
and
00:23:58
amanda
you know Do I see her being like, ah I don't know how many carbs that is. I'm just going to give myself four units when she's like 18 and then she eats a bunch and then she's 300 for four hours. like Do I want that to happen?
00:24:10
amanda
No, but do I care? Am I letting that eat me alive at the thought of that? No.
00:24:16
amandacberg
Because there's no point in it. Yeah, yeah.
00:24:18
amanda
Yeah. Cause there's no point in it. And she has every freaking right to be like, I'm not low. I'm not going to pass out. I'm not going to seize 300. It's not great for three hours, but I'm too freaking tired to give a shit.
00:24:29
amanda
Like she has every right to feel that way because I feel that way all the time with managing her diabetes, but I don't let myself do that.
00:24:29
amandacberg
Yeah.
00:24:37
amanda
You know, I don't know.
00:24:38
amandacberg
Yeah. Yeah. Yeah. No, I think that all what you said, I think is going to resonate with so many people because I think it's very normal to feel like you want to take it away, but also not want to deal with diabetes because who does?
00:24:50
amandacberg
No one wants to deal with this.
00:24:50
amanda
Yeah.
00:24:52
amandacberg
Um, so I think that's great. And. I think I was similar in the way that like my mom knew that I was very responsible. I wanted to take it on myself and that I was always going to handle it.
00:25:03
amandacberg
I think there were, I don't want to speak for her, but I, I believe there were probably more nerves around like random freak accident things happening.
00:25:11
amanda
Yeah.
00:25:11
amandacberg
And, um,
00:25:13
amandacberg
to this day, I'm sure, I mean, I think everyone in my life worries about me, even though I'm well managed and running the diabetes company and whatever, you know what I mean?
00:25:19
amanda
yeah
00:25:21
amandacberg
It's just like, it can still happen.
00:25:22
amanda
Yeah. know
00:25:24
amandacberg
And I also, so I think my biggest fear with diabetes or one of them is like the thought of getting old with diabetes. I think about that and like, how will that be managed? And like, what if I can't really take care of myself and what that will all be, which But then I quickly get rid of that fear by realizing how different technology will be.
00:25:40
amandacberg
And I think that really relates to this one as well, because by the time that you're, I mean, depending on how old they are, but even in five years, like the rate at which things are moving now in the diabetes space, it's just so different than when I was first diagnosed.
00:25:53
amandacberg
So even in the next two years, so much is going to change.
00:25:56
amanda
Yeah.
00:25:56
amandacberg
So that gives me a lot of comfort and the ability to just be like,
Balancing Teenage Independence with Diabetes Care
00:26:00
amandacberg
you know what? I don't know what diabetes is going to be like. I'm not going to think about it.
00:26:03
amanda
Yeah, yeah. I think the other thing is like, because like you just said, like our jobs are to be immersed in this space, I've become super aware of adults who have had it since they were children who kind of just like flew by the seat of their pants because they were basically like fuck diabetes and I'll make sure I don't die, but short of that, nothing else matters, you know?
00:26:22
amandacberg
Yeah.
00:26:28
amandacberg
Uh-huh.
00:26:30
amanda
And like the prime example for me at least is Meg and like how well managed she is and how much she just like loves life and lives it to the fullest and whatever.
00:26:35
amandacberg
Yeah.
00:26:44
amanda
And I would say you, but I know that you always like tried, you know, and I think that she, she's just explained how she like literally didn't care.
00:26:48
amandacberg
and
00:26:54
amandacberg
Yeah, yeah.
00:26:54
amanda
Like never looked at her numbers, barely gave herself insulin.
00:26:57
amanda
Just, you know, it's crazy.
00:26:58
amandacberg
Yeah, it is. And I will say with all the friends I've made now and the diabetes, or just not space, but just friends with diabetes, probably 90% of them have told me and I had the same thing that they had kind of a light bulb moment where they were like, oh, I need to figure this out.
00:27:15
amandacberg
Like I've just kind of been riding along and I did that for so many years. Like I tried in the way that you were saying, yeah, I would dose for things, whatever, but like my numbers were wild still and I wasn't really trying and I didn't have the data we do now, but still.
00:27:23
amanda
Yeah.
00:27:27
amandacberg
So yeah, I think it's, it can happen at any time and you just don't know when that will happen for your child. But like believe that a lot of times we have this moment where we're coming into adulthood and we're like realizing what this really means for us and how important and it is to actually care for ourselves.
00:27:44
amandacberg
And that can involve a flip of a switch and changing A1C and changing all your habits. And like it really, it can happen even though it might seem crazy.
00:27:52
amanda
Yeah.
00:27:54
amandacberg
right now.
00:27:55
amanda
Yeah. The other thing is like, I was a very kind of like, I was the kind of teenager and young adult who was like, if you tell me what to do, middle fingers are going up in the air and I'm doing the exact opposite.
00:28:09
amanda
Like I don't want to hear it. I want the freedom and the allowance to be who I currently am and figured out by myself. And I think that I want to hold on to like that reality for ah yeah Like just constantly to check in with myself as Hattie gets older and say like, this is normal. This is typical teenage behavior. And like, if I notice that she is having really tough diabetes days, weeks or months,
00:28:43
amanda
not making that a primary focus in the discussion, not constantly bringing it up, but also parenting. So also checking in in a way that's like.
00:28:52
amandacberg
Yeah.
00:28:55
amanda
I'm just checking in, are you OK? Are you burnt out? Is there anything I can do for you or do you just not want to talk about it? If you don't want to talk about it, tell me I don't want to talk about it. And if she says I don't want to talk about it because she's she's like that right now, we call her.
00:29:08
amanda
Oh, my God, I almost said our last name.
00:29:11
amanda
But it's very, my husband's side of the family, just like, don't acknowledge the tough, just like joke your way through it, kinda, you know? And that's not how they are exclusively, but that's like the big joke, everyone agrees, we're all like that, whatever. And she is definitely like that. And so I think I just wanna give her the space when this time comes because it's inevitable for it to come. She's not gonna be like,
00:29:38
amanda
let me dose perfectly all the time and pre-bolus and oop I'm gonna say no to this cookie right now because my blood sugar is 210 and I want it to come to like no that's not how you live life it's just oh
00:29:49
amandacberg
Yeah, not at all. Me with the ice cream last night, going super high in the middle of the night.
00:29:52
amanda
yeah
00:29:55
amandacberg
Yeah. And I was thinking that's like such a tangent, but like I had friends who had to stay over because they were in town for a night. And I was like, I could have bulled this.
00:30:05
amandacberg
This is what I was thinking this morning. I could have bulled so much better for that insulin. But like we were in conversation. We were walking around, or not for the insulin, for the ice cream. We were walking around and I just like, I don't know what I gave.
00:30:15
amandacberg
I like looked at my pumpkin and I just like gave some insulin.
00:30:16
amanda
ha
00:30:18
amandacberg
And then all of a sudden I was in the 200s and I wouldn't come down. And then of course I'm rageful saying, and then of course I'm low all night. And like, I know how to dose for ice cream. Why didn't I do it? But also like, I shouldn't be so mad at myself because I was living and that's going to happen to all of your
00:30:31
amanda
Yeah.
Ensuring Safety in Diabetes Technology
00:30:32
amandacberg
kids too.
00:30:32
amandacberg
like Oh my gosh, it's a hard balance.
00:30:35
amanda
Yeah.
00:30:36
amandacberg
Okay, I think we should do one last one because it's a big one, the pump failures one.
00:30:38
amanda
yeah
00:30:41
amandacberg
Someone specifically said they're worried about like a pump malfunction and all the insulin going into their son's body. and
00:30:48
amanda
Yeah, there were there were a few of these. My interpretation of that, like my how I think about this, because it's not a fear, I've never had this fear, is the ah FDA would never in a million years approve any pump that's available on the market if there was even a remote possibility of that happening.
00:31:11
amanda
And so the the closest we get to it is if you're traveling on a plane and the pressure changes, and because of the pressure changes, potential air bubbles go up and go down and whatever, and then they push a bit of insulin into the body.
00:31:26
amanda
And yes, that's scary, but can it push all the insulin in? I mean, I don't know. I don't think so.
00:31:34
amandacberg
I don't think so.
00:31:35
amanda
You need a big air bubble.
00:31:35
amandacberg
I might be returning think there was one instance with an old, I don't know what pump company it was. They might not even be around where something like this might have happened, which I don't know if that's how this person got the idea.
00:31:47
amandacberg
um I don't think it pushed all the insulin in. I really don't think that's possible. um But I think it was a good amount. And I don't know. I i don't think about it now either, because again,
00:31:58
amandacberg
I think of myself like surrounded by all these tools. You can't see right now. I'm like making a circle around my body.
00:32:03
amanda
ha
00:32:03
amandacberg
I'm like, okay, go extremely low. Dexcom goes off. Go extremely low. Maybe you have a sugar pixel as well. All the other things I talked about with sleeping. Plus you have glucagon, you know what I mean?
00:32:15
amandacberg
And We have a Dexcom or okay. That's a lot of privilege of me speaking, but I have a Dexcom. I'm not sure what you have. Hopefully you're on some sort of CGM. I think some CGM's are starting to become more affordable and you're able to catch those before they happen. I know during the night is really scary, but at least with a closed loop pump again, it's suspending. Like there's just all these things in place where I just don't think.
00:32:39
amandacberg
that's a reality and not worth my energy. But I get the fear, like that is scary. When I read it, I was like, whoa, I've never thought about that.
00:32:45
amanda
Yeah, I think that so so many fears come from a place of lack of knowledge or too much too much knowledge, you know, and so I think that like you got to figure out which one it is and if it's a lack of knowledge trying to educate yourself more on how the pump actually works, what the safety features are, what safety mechanisms there are, what safety things you could put in place on your own in the settings.
00:33:13
amanda
So my favorite safety feature is the Max Bolas safety feature.
00:33:13
amandacberg
Yes.
00:33:18
amanda
like My daughter will never get more than five units at one time. Five units at one time is a lot for her and it's very scary, especially if she has not eaten anything and she just gets five full units.
00:33:31
amanda
But it is a manageable amount of insulin where it would not kill her if we took steps immediately. you know And then I think to myself too, like
00:33:42
amandacberg
Yeah.
00:33:45
amanda
What if somebody overrode it? What if Hattie herself overrode it? You know, like all these crazy things. And then there's a ton of insulin in the body. Glucugone, Glucugone 911. As soon as the paramedics get there, it's like, she's diabetic. I have no idea how much insulin she took. It is way too much. And then they basically just open a bag of D5, which is sugar water.
00:34:10
amanda
and let it flow into her body, you know, and like you deal with the consequences of that stuff later. But at the very least, least, like the life is being saved.
00:34:19
amanda
So I don't know.
00:34:20
amandacberg
Yeah. I agree. And I also don't want to discredit anyone's fears. I think we're we're trying to come up with solutions to easier fears, but we all still have our fears and they pop up.
00:34:29
amanda
Yeah.
00:34:31
amandacberg
So just want to make that clear that we're not saying like, don't worry about that. Like that's way easier said than done.
00:34:35
amanda
Oh no. I mean, are you kidding me? I have been fighting tooth and nail for two and a half straight months because I'm like, what if you don't see a blood sugar to 40 one time?
00:34:38
amandacberg
All of these.
00:34:45
amanda
you know It's still there.
00:34:46
amandacberg
Yes, yes, yes, they're all real theories.
00:34:48
amanda
Yeah. I'm like talking this big talk, but it would be horrifying and scary. But at the end of the day, like the reality of something this significant happening is very, very, very low if it exists at all.
00:35:02
amandacberg
yeah
00:35:04
amanda
And then if it does, there are things in place to at the very least save the life first and foremost, and then you address all the other stuff later.
00:35:17
amandacberg
Yeah. All right. Well, we hope this was helpful. Um, we are going to do more like this where we kind of get some stories, questions, fears, you know, things like that and go through them.
00:35:29
amanda
Yeah.
00:35:29
amandacberg
So let us know if there's any ideas y'all have and blood sugar roll call real quick. I'm 100 unicorn.
00:35:35
amanda
Ooh, love it.
00:35:39
amandacberg
Yay.
00:35:39
amanda
Howdy is 113. Nice and flat. Doing great after um recess. Yay.
00:35:46
amandacberg
I love it. Amazing.
00:35:47
amanda
Same.
00:35:48
amandacberg
All right. We'll see you all next week.
00:35:49
amanda
Bye.
00:35:50
amandacberg
Bye.