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Episode 63- Diabetes Chats: How We Take Control Back
222 Plays1 month ago
In this episode, Amanda and Raquel discuss what they have control over, and how they use that sense of control to reign in diabetes. Tune in for real life examples of how these girls interpret graph data and make changes to their daily lives to achieve the time in range they are happy with.
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Transcript
Introduction & Episode Plan
00:00:23
amandacberg
Okay, everybody. Today, ah it's just me and Raquel. Hi, I miss you.
00:00:28
Raquel
hi
00:00:28
amandacberg
I i love what?
00:00:29
Raquel
and forever this It's been forever since we've done this, just us.
00:00:32
amandacberg
i I know I was just about to say, like I really do love having guests on and our guests are so educated. like They offer so much amazing insight, but I also really love our one-on-one talks and just like getting into the nitty-gritty of diabetes management.
00:00:50
amandacberg
which is what we're going to do today. We are going to focus today's episode on all of the things that you can control, the things that you do have control over with diabetes, um because there's a lot out of our control right now.
00:01:07
Raquel
Yeah, there is always going to be, there's always going to be times where you just feel like you can't get diabetes to do what you want it to do, but. There's a lot of times that we can control it.
00:01:18
Raquel
That sounded really obvious as I was saying it, but it's like, there's no point in focusing on the times that you can't control because it's out of our control literally. And it's like, why just be so set on that because it's so draining and exhausting and it can be very defeating.
00:01:26
amandacberg
Yeah.
00:01:34
Raquel
So I feel like that's what I tried to focus on so that I don't get as burnt out, but I don't
Challenges with School Diabetes Management
00:01:40
Raquel
know. What are you currently experiencing with controllers?
00:01:43
amandacberg
Well, in this exact moment, I am unfortunately watching her blood sugar hang out in the 300s. And as everyone knows, we are struggling so bad with school. San Diego Unified refuses to remotely monitor their dipon diabetics in the nurse's office. So the health office staff literally never has any idea what Hattie's current blood sugar is unless they are physically next to her and look at the pump phone or the Dexcom phone.
00:02:16
amandacberg
And it's my understanding that essentially they're trained to just like look at the number and make a decision based on that number, which is such an outdated way of managing diabetes because diabetes management needs to be it needs to include the rate of change in your decision making. And so what has been happening is she's had a lot of lows at school and it they are claiming it's the fact that her carb ratios are too strong, but they're not. My daughter is incredibly sensitive to the 42 other factors. So like,
00:02:55
amandacberg
adrenaline, excitement, exercise, remaining. you know like Sometimes she'll drop during exercise, sometimes she'll drop an hour after exercise when the metabolic rate has like increased from exercise.
00:03:08
amandacberg
you know And it's just one of those things where no two days, no two hours are the same with her and they're just kind of refusing to acknowledge that.
00:03:09
Raquel
Yep.
00:03:16
amandacberg
And so one thing I did is they were suggesting let's change car ratios. And I was like, no, because she will be high all the time.
Omnipod 5 & Exercise Mode
00:03:25
amandacberg
And um what I have been doing instead is putting her in um exercise mode because that is the one thing I can control. That is like a safety net feature of Omnipod 5, which like freaking shout out because it's it's so safe.
00:03:44
amandacberg
um And it did improve lows, but the result is then she is high because they're not she's not high all the time, but she is more prone to going high at certain parts of the day because they're not seeking my counsel on how to dose, when to dose, how much, you know.
00:04:07
Raquel
Yeah.
00:04:09
amandacberg
um
00:04:10
Raquel
Wait, I have a question on that actually, because I think about this with control IQ as well, which I forgot to say I'm in a contracted agreement with tandem diabetes. But, um, when you go in activity mode, like even if she's hanging out at one 31 40 or something like that, and then she eats lunch and it gives, and the teachers or whoever are dosing her for the nurse for the carbs that you've written down.
00:04:34
Raquel
So it's using her actual carb ratio. Yes, she's getting all of that insulin. However, I'll notice that if I've been in activity mode before that, that I'm still going to potentially go high because I don't have the normal amount of basal insulin going in.
00:04:46
Raquel
Does that make sense?
00:04:47
amandacberg
Yes, that's exactly what's happening.
00:04:49
Raquel
Yeah.
Managing Blood Sugar During School Activities
00:04:50
amandacberg
So activity mode drastically reduces the basal rate, the background basal rate. um And that's what she needs sometimes.
00:05:02
Raquel
Great.
00:05:03
amandacberg
But the problem at school is like, she needs that for certain hours of the day. And I already attempted to adjust the target range for her blood sugar to match like the needs.
00:05:14
amandacberg
But then the reality is every day at school is different. Like she has different activities every day. Some days they sit and watch a movie. Other days they're up and doing like kids yoga and dance parties. And I never know which one is happening. And so I just resorted to activity mode.
00:05:33
amandacberg
And so that's the thing that I was controlling in the last three days. It worked out okay. She definitely was like 180 to 210 for a couple hours, not the end of the world, not ideal because she hasn't sat up there for you know years really.
00:05:51
amandacberg
like Of course we hit the 200s but I'm always doing something to make it come back down and right now I don't know what's happening but she's 340 straight arrow up and I had called the nurse right before lunch and said just so you know this is what I'm seeing on my end because I know you don't have access to it
00:05:53
Raquel
Yeah.
00:06:13
amandacberg
please do a finger poke so that she's getting the a accurate amount of a correction with her lunch bolus that she actually needs. And then I asked her to follow up and i there's just like nothing.
00:06:27
Raquel
Yeah.
00:06:27
amandacberg
don't No email, I can't text her anymore.
00:06:27
Raquel
yeah
00:06:30
amandacberg
She told me to that like San Diego Unified doesn't want them using personal phones to text. It's just really frustrating now I'm on a tangent and like not talking about what I can control.
00:06:41
Raquel
No, but but that just goes to show there is so much out of your control right now. And it's like, how can you Focus your energy on the things you can control. That's way easier said than done.
00:06:52
Raquel
And this is not a good situation. I'm not trying to sugar coat it at all. This is awful.
00:06:56
amandacberg
Yeah. Yeah.
00:06:57
Raquel
But it is what it is at this moment.
00:07:00
amandacberg
Yeah.
00:07:00
Raquel
And you're going to do a lot of the things hopefully to get. bigger issues changed in San Diego and in other places too.
00:07:07
amandacberg
Yeah.
00:07:09
Raquel
So it's like, how does the transition work from Howdy being at school to then coming home and are you doing anything different at home because it is ours or it's the hours that you can control?
00:07:21
Raquel
Yeah.
00:07:21
amandacberg
Yeah, 100%. When she comes home, what what I can control the second I pick her up is giving a bolus if she needs it.
Insulin Resistance Strategies
00:07:31
amandacberg
And so I like dive into that if she needs it.
00:07:36
amandacberg
And I always have a ton of low snacks with me because very often when her blood sugar is high, she has the glucotoxicity effect where when your blood sugar is high, your body is like resistant to taking in the insulin so a lot of times especially those of of us with kids it's like the docs will say here's the correction factor and you give the correction factor and they tell you to wait for two to three hours before you give another one and you don't see any movement it's because the correction factor is not strong enough and the unfortunate reality is sometimes you have to give so much insulin
00:08:14
amandacberg
to get the body to like pay attention and actually start taking it up the insulin and lowering that blood sugar. But then it is so much insulin that it could lead to a low. So the what I can control in that moment is a ton of insulin to get the blood sugar down faster. And then I can also control having a protein rich carb loaded snack that I give before the low.
00:08:42
amandacberg
it comes to fruition, you know.
00:08:45
Raquel
Yeah.
00:08:45
amandacberg
So that's what I do when I pick her up and she's high. And then I also like dedicate a lot of my energy to -bolting accurately and, you know, just like not taking shortcuts as long as my mental health can handle it.
00:09:03
Raquel
Yes, that's so good.
00:09:03
amandacberg
um
00:09:05
Raquel
and Yeah, I have been dealing with a little bit of blood sugar chaos the past few days, which it's so weird.
00:09:12
Raquel
Sometimes it just feels like it comes out of nowhere. like it will be during my cycle or whatever that it's crazy and I expect that but then even after I do think I kind of know why like I've been doing different workouts and so my insulin needs are so different and it's frustrating so it's like you're trying to do something really great for your body and then it actually makes things way more complicated um And it feels like I'm just throwing insulin at things and throwing carbs at things and not knowing exactly how my body is going to react to it. And I think I relearn the idea that that is just diabetes every single day. Like there's always so many factors. And even with everything you're explaining, Amanda, it's like you have incredible settings in place. Omnipod is doing incredible things for your daughter.
00:09:54
Raquel
And still there's manual intervention that needs to happen because that's the reality of type 1 diabetes and
Limitations of Pump Automation
00:10:01
Raquel
how it works. And, okay, now I'm going to go on a tangent, but I think it might hopefully be helpful. Like we posted a video about, we should talk about this on the podcast anyways, about this idea of in the morning time or just during the day in general, you need to be very aware of whether or not your pump is pulling in your current CGM value in the OmniPod. It looks like that, right? Like you click.
00:10:23
Raquel
use current CGM or what does it say?
00:10:25
amandacberg
you You have to pull it in manually.
00:10:27
Raquel
You have to pull in it.
00:10:27
amandacberg
So you have to hit, I think it says use sensor now.
00:10:31
Raquel
Yes. With tandem, it says like when you're putting in the information for your bolus, there will be a pop-up and it says add correction bolus. Your blood sugar is blah, blah, blah. Or if you're dropping, it'll say reduce correct or yeah, reduce bolus.
00:10:46
Raquel
I don't know the exact wording.
00:10:46
amandacberg
Yeah.
00:10:48
Raquel
Your blood sugar is lower than average or whatever it says and you have to hit yes or no. I saw some people comment confused about that. So how you answer that question or whether or not you pull in that cgm number really really really really matters um and some people were commenting on that video saying like oh my my doctor just says to let the pump do its thing right and I think what they meant is that they will just um use that CGM value no matter what. But the issue is, especially in the morning hours, which we talked about in the video, you are already insulin resistant. And so if the blood sugar is 85 and you're eating waffles, but the last two hours your pump has been slightly suspending insulin to keep you at that number, you really do need the full
00:11:32
Raquel
you know, 20 car bullets or whatever it is you're giving for the waffles. You don't need to reduce that bullets or you're going to end up spiking like crazy. And so this idea of letting the pump do its thing really is true for like to a certain extent, but there comes a point where you can't let it do its thing and you need to. Okay. Sorry, we had to stop for a second because my mic was being weird. So I don't know exactly what I said before, but basically,
00:11:56
Raquel
The endos can tell you to just let the pump do its thing. And yes, that's necessary at times, but also there's so many other factors going on. And if we don't actually intervene and think about all the other factors going on in our life, then we're just missing a huge piece of the puzzle that the insulin pump just doesn't know.
00:12:11
Raquel
It's technology. It's not a human brain. It just doesn't know it. And it's nothing against the technology. It's just the reality of how it is.
00:12:19
amandacberg
Yeah.
00:12:19
Raquel
Um, yeah. So.
00:12:21
amandacberg
I mean, you're exactly spot on. Like another perfect example of this is right now for whatever reason, Hattie is like so incredibly insulin resistant and her growth hormone is ah out of this world as soon as she falls asleep and she's been falling asleep around seven most nights.
00:12:44
amandacberg
And no matter what, no matter how much insulin is already on board from dinner or correction or whatever, she skyrockets. And so I strengthened the car or the correction factor a couple of weeks ago. And there have been a couple of times where I'm just like, I'm scared to give what this pump is telling me. She has last night, she had 1.2 units on board.
00:13:08
amandacberg
she jumped from like 150, 170, 184 and I pulled in whatever the correction factor was and it suggested 1.4 units and I was like, oh my gosh, that's so much. But the last three nights what has been happening is I will say, no, I'm not gonna give that, I'm gonna give less. She continues to go higher and then I have to give more of a correction and then more of a correction.
00:13:35
amandacberg
And then ultimately, she has a correction bolus on board that I gave at 10.30, right?
00:13:35
Raquel
Yeah.
00:13:40
Raquel
Mm hmm.
00:13:43
amandacberg
And then once that insulin is in her system, it's working for three to four hours. And then that is one or two in the morning, guess what, when I see a low, because it's too much insulin in her system when she doesn't actually need it.
00:13:59
amandacberg
And so what I did last night was I just said, I'm just giving it. And so I gave the 1.4, it slowed her down and then she slowly came back down. She only touched like 220 and then she slowly and safely came back down and was in range the rest of the night because then the target blood sugars um and the pumps like basal rate could
00:14:24
Raquel
Yes.
00:14:25
amandacberg
accurately and adequately keep her where she actually needed to be instead of fighting with the the correction that was given too late in the night, if that makes sense.
00:14:31
Raquel
Mm hmm.
00:14:37
Raquel
Yes. Ugh, it's so hard sometimes to like put all of this into words, but I think you do a really, really good job of it. We had a comment the other day on your video about it involved bullseye for pasta, right?
00:14:48
Raquel
And someone was saying like, Oh, so you're saying that if blank happens, she'll come down this much. Or do you, do you know what I'm talking about? Where it was like a very like clear cut.
00:14:59
Raquel
If you get this many carbs, she'll come down 40 points or something like that. Um, then you,
00:15:03
amandacberg
oh oh Oh, no, the comment was saying, um well, my question is for my kid, if she's like 70 or 80, the next number is always 40, like in terms of her blood sugar, like lows, you know.
00:15:16
Raquel
Yes. yes
00:15:19
amandacberg
And so in that case, I was explaining like, there's a lot of factors at play. Like does she go to 40 because she's always playing and like running around the house at that time?
00:15:24
Raquel
Yeah. Yeah.
00:15:29
amandacberg
Like does she have fresh insulin on board, miscalculated carbs? Did we, you know, like there's just so much. And if, if your child is like so hypersensitive to, um, to insulin sorry it was like carbs no insulin, then when they're starting to drop, it's probably smart to prevent a low in the first place instead of treat the low after it's already occurred.
00:15:58
Raquel
Yep. So again, it's like using that. Like out of the box thinking almost to be like, okay, what actually makes the most sense here?
00:16:03
amandacberg
i
00:16:06
Raquel
So like tangibly when I was having those really rough blood sugar days, it was a lot of highs that then resulted in lows or maybe the lows were causing the high. I don't know. It was very confusing.
00:16:16
Raquel
The next day, I just had enough, so I just decided to have a low-carb breakfast and like just take away as many factories as possible. like instead of I know kids, you can't always do this, but if it's a weekend, there's probably more that you can do. um like Instead of going out and like doing things or going to a coffee shop and eating something, I didn't know the carbs up for breakfast. I just stayed at home, made myself a low-carb breakfast.
00:16:41
Raquel
gave a little bit of insulin, like watched my numbers extra closely. I changed the basal profile I had on in my pump to lower the amount of basal I was getting so I wasn't seeing the lows. And then like I just stabilized and there's something about once you finally stabilize, it like i don't know if this is real science and but like in your body just feels better and it's harder to get back on the roller coaster is what i found it's like okay i'm here i'm good and then like the last two days have been beautiful i went back to my normal basilar eats and it just kind of feels like we're always winging it but i really think that taking away as many of those factors as you possibly can is so helpful which is exactly what you're doing when hadi comes home and you're like okay
00:17:22
Raquel
maybe normally if I was really tired I would just not pay as much attention to the amount I was measuring or I wouldn't give the exact pre-ballist but because the numbers are crazier during the day right now I'm gonna really do this as perfectly as I possibly can and those little things do make a difference.
00:17:27
amandacberg
Yep.
00:17:32
amandacberg
Yeah. They really do.
Using Low-Carb Meals Effectively
00:17:38
amandacberg
You're so right. Getting off of the roller coaster is the best way to like achieve the normal again. So if for a while you've been kind of winging it and just like guessing at the carbs and dosing after halfway through or whatever, and you're seeing a lot of up and down,
00:18:00
amandacberg
I love using low carb as a tool too, where I try, like that was what I did last night at dinner was it was chicken nuggets that where each nugget is like four grams or whatever and veggies. And it was like, you know, this is low carb, high fiber, high protein. And let's just like give your body the nutrition it needs and the stability of the macros that it needs.
00:18:27
amandacberg
And even though she still had that really gnarly spike, I felt safe-ish giving that 1.4 recommended correction because I knew she had so much protein and fiber in her from dinner.
00:18:32
Raquel
Yeah.
00:18:40
amandacberg
um Which is so hard though because the thing that's out of my control is how incredibly picky she is.
00:18:47
Raquel
yeah
00:18:48
amandacberg
that That is where it's like, oh my gosh, nine out of 10 times. She's saying, I just want candy fruit and buttered pasta, which is like so hard to bolus for, but sort of just put my foot down and said like tonight's dinner is chicken nuggets.
00:19:04
Raquel
Yeah.
00:19:08
amandacberg
It just is so hard.
00:19:09
Raquel
Wow.
00:19:09
amandacberg
and What else are you controlling lately? Anything?
00:19:14
Raquel
Well, I think paying attention to site timing, site change timing, which we also talked about on Instagram recently, like being really aware of when you're doing that. I actually kind of failed at that the other day because I did another morning site change and I purposely gave a little insulin in my old site before putting on the new site.
00:19:31
Raquel
And then I gave more insulin in the new site. Cause I was also eating breakfast and I was like, I do not want to spike. Like that's the last thing I want. And then I ended up going really low. So sometimes that works sometimes it doesn't because like you said, it's not always.
00:19:41
amandacberg
Okay, i we were having some technical difficulties. I don't know what's happening, but the video and sound is like pausing out of nowhere. And so we lost our train of thought because as I paused it to give it a second to catch up, I got a call from Hattie's school to let me know that today, even though she told me she didn't like any of the hot lunch options, so I packed her a lunch. She came into the nurse's office with hot lunch.
00:20:11
amandacberg
And the nurse was just sharing that with me and also sharing with me that the finger poke was 290 when she was reading like 325 or something. So a little bit off, it's the last 24 hours of Dexcom. So there's that, but um I was like, do you know if she ate it? And she goes, I don't know, I'm in here with a bunch of students. I'm like, okay.
00:20:39
amandacberg
This is why she needs a one-to-one, you know? It's like if if the communication can't be like fluid and easy between the people who are watching my daughter and the nursing staff, then like a one-to-one is necessary.
00:20:44
Raquel
Yeah.
00:20:53
amandacberg
And I cannot believe we have to fight for that even though we have a freaking doctor's order that says she needs a one-to-one.
00:20:56
Raquel
Right.
Systemic Issues in School Diabetic Care
00:20:59
amandacberg
But again, I digress. And the nurse is kind of like, so I gave her, you know, her insulin for the carbs and chicken.
00:21:10
amandacberg
And I was like, I'm sorry, I'm laughing. But like, she literally never once has ever expressed interest in eating a chicken drumstick. And I know she's not gonna eat rice with it.
00:21:22
Raquel
Yeah.
00:21:23
amandacberg
And I was like, so I guarantee she's gonna go low.
00:21:25
Raquel
Uh.
00:21:26
amandacberg
And I am going to be calling you back when she's probably around 100, as long as she's continuing to drop more than 15 points, because I need you to be aware, because that's a lot of insulin.
00:21:38
amandacberg
when she's that high to have a correction and insulin on board for lunch that I guarantee my child's not gonna eat.
00:21:41
Raquel
The hot lunch adds such a variable.
00:21:46
amandacberg
And it's just like, why can't they call or text me and talk through it?
00:21:52
Raquel
It's the same.
00:21:53
amandacberg
I want to scream.
00:21:54
Raquel
Yeah.
00:21:55
Raquel
I know.
00:21:56
amandacberg
No, it's it's okay.
00:21:56
Raquel
And I always feel like I don't have anything to say because it's my social.
00:21:57
amandacberg
like I don't know, we're just gonna stay on this topic for a second and then we can hop off and call it a short episode.
00:22:00
Raquel
oh shit
00:22:04
amandacberg
But like people people say homeschool. I'm not doing it, okay? i'm I'm not doing it. At my weak points, I feel like I'm go just gonna go homeschool.
00:22:13
Raquel
I need to.
00:22:14
amandacberg
i just I just need my kid. But at the end of the day, I don't want to. We do so much better with a few hours apart from each other. She...
00:22:25
amandacberg
is the most social little four, almost five-year-old I've ever met in my life. like She has a thousand friends already. She is thriving, and she's already starting to read. They've been in school one month.
00:22:37
amandacberg
She came home, sounded out two letters, and read five words the other night. and like someone Someone commented, like school is magic.
00:22:44
Raquel
Yeah.
00:22:45
amandacberg
We love teachers. like I feel like I just send them out somewhere and they come back reading like what a magical thing and I agree that's also how I feel about like public education and then the other thing is okay private education well one we don't have the money for it and two I had a horribly negative experience with private education growing up And I know that just because my experience happened does not mean that that's exactly what she would experience, but I'm still unwilling to put her in a position to even remotely come close to experiencing the amount of guilt and shame that was an integral part of my childhood education.
00:23:29
amandacberg
And so that's just out of the question. And it's like, there's the, the option should not be take your kid out. The option should be school step up, you know, step up and change stuff and stop managing diabetes as if it's fingers finger, fingerprints and injections only.
00:23:44
Raquel
Yeah, definitely.
00:23:52
amandacberg
Yeah.
00:23:52
Raquel
Yep, there's a lot more. Yeah, I was just telling him that my mom literally just sent me a picture of an old log she found because she's currently moving and just going through stuff. And it was a log from 2002. So I think I was five. Yeah. um Like that must have been right when I was diagnosed. And it just has like a column for breakfast, lunch, dinner, and every time we went to the end, I remember we would sit in the waiting room, we'd write out, we'd go through my meter clicking through and write out my blood sugars based on the time. And then they would look at that and try to make adjustments and everything, which now is just, it's such a weird concept. Cause it's like, there's so much that happens between those numbers that making adjustments based on that, I understand that's all they could go off of. So what else were they supposed to do? But that's kind of terrifying. Like you have no idea if you're going super high or dropping really low between those times.
00:24:43
Raquel
So yeah, that's not diabetes anymore. It doesn't need to be managed like this. And Dexcoms are there for a reason. And yeah, but we've gone over this a million times. And if you want to hear more about all this, there is a full episode that Amanda did last week and TikTok videos about it, but I just can't believe it.
00:24:56
amandacberg
Yeah, there's a lot. There's also, i I do plan on making a free, I think I've explained this too, but a ah free um masterclass dedicated to every single step that I've taken in terms of like,
00:25:14
amandacberg
advocating for your
Creating a Diabetic Advocacy Masterclass
00:25:15
amandacberg
child. So like step one, you're getting ready, you're newly diagnosed and or you're getting ready to send your type one child to school. This is the first thing you should do. Here are the links. Here's what to do. Here's verbiage of, you know, explanations, whatever. But I just need some time to keep figuring out our own issues and then that'll come out. Who knows when.
00:25:43
Raquel
Yeah. I'm so glad you're going to do that.
00:25:44
amandacberg
Fingers crossed.
00:25:46
Raquel
That's going to be really helpful.
00:25:46
amandacberg
All right, well, sorry for the few pauses and thoughts being cut off in this episode.
00:25:55
Raquel
This was such a random just like rambling episode, but we just feel like we need to connect with you all again and like just get our thoughts out since we haven't been on
00:26:01
amandacberg
Yes.
Sharing Diabetes Management Experiences
00:26:04
Raquel
here together.
00:26:04
Raquel
So hopefully it was something, but also might've been hard to listen to.
00:26:05
amandacberg
I think it was something, I mean, the thing that I learned the most from was people explaining explicitly, this happened, that happened, this happened. This is how I interpret the data and this is what I'm choosing to do differently. Because then I could go back to my ah own life with Hattie and be like, oh, I'm going to interpret this data in this way. And then, you know, whatever. So, okay, we will talk to you guys next week.
00:26:34
Raquel
Yes. And little plug for better together. We did launch enrollment for the next round of our group coaching. We've had an incredible experience with our past two groups and like huge A1C drops, big sense of community.
00:26:49
Raquel
The groups are still chatting to this day in our little group meet that we create for you all. So, um, spots are feeling fast, but definitely check it out if you're interested and let us know if you have any questions.
00:26:57
amandacberg
Awesome. All right, everyone. Goodbye.
00:27:01
Raquel
See you later. Bye.