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Episode 70 - Do we want a cure?
187 Plays11 days ago
Raquel and Amanda chat about being extra emotional about diabetes lately, the idea of a cure, managing diabetes in social situations, if others should follow dexcom and so much more!
This episode is sponsored by Sweet Dreams. You can learn more and download the app HERE.
Raquel is currently in a contracted agreement with Tandem Diabetes.
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Super Parents Community: https://honeyhealth.app.link/28gQmJjyDsG
Facebook Group: https://www.facebook.com/groups/typeonetog
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Transcript
Introduction to Type 1 Together and Sweet Dreams App
00:00:04
Speaker
Hello, and welcome to the 108 podcast. I'm Amanda. And I'm Raquel. And we're the Type 1 Together Girls. We are stripping down life with type 1 diabetes from two people who live different versions of it every single day. Please remember, Type 1 Together does not give medical advice. We are only sharing from personal experience. Today's podcast episode is sponsored by Sweet Dreams. Sweet Dreams is an incredible app that connects to your child's Dexcom or Libre login information, and then it pulls in their current blood sugars from there. But the unique thing about Sweet Dreams, it is highly customizable. So one of my favorite things about it is that I can actually create like a widget where it lives on the home screen, like the lock screen of my phone. So I don't have to open my phone, put in my password, and then suddenly get pulled into Instagram scrolling or whatever when really I just needed two seconds to look at my child's blood sugar. I feel like you've told me for so long, Amanda, how important it is to pay attention to the rate of change, which is so true, but I just hadn't implemented an app that did that for so long. And now that I've been using Sweet Dreams for over a month, that to me is one of the most exciting things because not only does it tell you your blood sugar, but it also tells you plus five, minus 10, whatever it is. And that really helps me make dosing decisions based on that. It just gives you so much more information than just the arrows alone. And then I also recently added it to my Apple CarPlay, which is a game changer because it's obviously not good to be looking at your phone while you're driving and looking for your blood sugar. But it's so important as an adult to make sure that I'm driving safely with good blood sugar. But even if you're a parent and your kid's in the backseat, you want to know where they're at. And so being able to see that while you're driving has been just giving me so much peace of mind. It's also so cool because multiple different profiles can download the Sweet Dreams app And then you use the same Dexcom login information, but you just create a different name for each user. And so mine is Mama, my husband's is Dada. And if we were to introduce this to our daughter's elementary school, they could put the name of their elementary school or whatever. And one of the most amazing features is the message button. So if I were to notice that my daughter was going low, I could click the message button and ping. And then the nurse would get that ping. And if she was on top of the low blood sugar, she would then press acknowledge, telling me, hey, I've got this. No worries. And it's just so fast and so easy. We love Sweet Dreams so much. Everything you said, yes, there's so many cool features. And this is just an app I'd be using whether or not we were working with them a thousand percent. So I really hope you all check it out. We know there are a lot of apps apps doing different things out there and we have told the sweet dreams team over and over again that we just believe in there's so much and it's so refreshing to have one that is actually so helpful so we'll leave the link in our show notes and let us know how you like it all right thank you thank you sweet dreams hi there's a catch-up episode.
Personal Catch-up and Community Support
00:03:23
Speaker
What's up? It's funny because it's a catch-up episode for the podcast, but we just spent all day yesterday, so we've caught up on our lives together already. That's true, but we haven't really talked about diabetes, funny enough. Yeah, true. That's the sign of true friendship and not just business partnership. I feel like when we actually get to hang out, we don't talk about diabetes at all. No. Yeah, that's most of my type 1 friends. That's nice. That is nice. Maybe that's where, you know how in the past you've said like, do I need other friends who aren't type 1? Like I just want some non type one friends, but maybe you don't actually like need it because you don't, you get the friendship without the diabetes only. A thousand percent. I think it's just because I've felt like I've met people only through the diabetes community, which feels like cheating or something. It's so weird. Like there's no reason why it shouldn't be that way. But I'm like, I just want to meet people wherever people meet people. But I know that's a hard thing for everyone these days. So yeah. Yeah. It does not matter. I love my type one friends so much. Yeah. I know this community is pretty great. That's a fantastic segue into we should talk about the Breakthrough T1D walk that we just participated in yesterday in San Diego. It was so fun. So Breakthrough T1D, in case anyone doesn't know, is a new name for JDRF, but it's hard for me to remember to say, so I'll probably mess that up in a second. But yeah, we went to the San Diego walk and it was our second walk, I think, maybe third. And it's fun for me because I grew up going to these when I was really little. My whole Girl Scout troop would come every single year. I really need to go back and find a photo of my little group. My team was called Raquel's Racers. And it was just the day where I felt so loved and supported and seen, I think. I didn't like being part of the diabetes community at that age, but there was something about that day that was really fun. We'd all go to lunch after and stuff. So it's fun now to see it from a very different perspective, be there together and see all these new families coming in and just know that they're going to know, like I was there at one point too. Yeah. I love that. When we were very first diagnosed and they, you know, they essentially basically just had JDRF as a resource. And like in the first week I tried to join a coffee chat and no one showed up, not even the moderator. And so I just had like a really negative, negative is the wrong word, I guess. It was more just like, oh, this thing exists, but it's probably like not that big. And clearly there aren't like that many people. So it made me feel like I was even more alone and isolated. Like I truly was the only one with a two-year-old with diabetes. But one thing I wish that was explained better to me early on was that JDRF, now Breakthrough T1D, the walks specifically, it's not just for people with diabetes. Like you can create a team and invite your friends and your family and having that kind of support group opens up like this world to them where you can explain how challenging it is over and over and over again. But there is something different about being immersed in this world, you know, at the walk and going from table to table and vendor to vendor. And I don't know, it was just really cool because there were, what, 80 teams, I think, yesterday. Yeah, there were a lot of people. Yeah. And so it was like, okay, we would see this group of cute little eight-year-old girls, like 10 of them. And we're like, what's your connection? They're like, all of them point to one girl and they're like, our best friend, only her. She's the only one with type one, but we're here. What do you guys do? Tell us about your business. And it was just cool. I don't know. It's so cute. And they also like really emphasized, especially because we were trying to help get more people there this year. They were like, even if people can't raise money, have them show up. Like they really care and they just want you to be there for community. So it's not just about that. And I really encourage anyone to go to a local walk if you can, even if you're older, there are adults that show up too. And the people that work there, I think they've been really spread thin lately, especially since the pandemic, which is probably why you had the experience you did. But getting to know more of them over the last couple of years, they really care. They really want to be there. They really want to help these families very genuinely. So it's a beautiful thing. And it was so fun. And also, you and I went to lunch after the same place we went last year. And for me, it was just such like a, wow, we've really done a lot in the last year because number one, I was just thinking and saying to you, I just want to live here so bad. I just want to be in San Diego by this time next year. And I did. We did it. And then also, just last year afterwards, we sat down and just looked at goals for Type one together. And then we opened up our computer to that same screen yesterday and we had already accomplished so many of those goals. So that felt really subtle too. Yeah. That was a really like pinch me moment for a second because I didn't realize that we had written some of those hyper specific goals down and it was like, oh, check, check, check. Yes. That's awesome. That's crazy. Wait, how long have we worked together now? I think it'll be, I think it's two years like right now. Yeah. Okay. Cause it was right around December that we first met. Yes. That's wild. Okay. Well, what else has been happening in diabetes world?
Diabetes Management in Schools and Challenges
00:09:26
Speaker
Diabetes world. I forget if I, yeah, I'm not sure if I've like updated on the podcast. The fact that San Diego Unified is starting a pilot study at my daughter's elementary school. I've talked about it a lot. So if you're like, oh my gosh, shut up. Sorry. They officially got the iPad in the health office on Halloween, which was really cool. And they set it up and I went in because I was already volunteering at the school for something separate. And I went into the health office and I kind of like sat down and, you know, looked at it with them and they were like, okay, so the low alarm is set to a hundred, but the orders now state like there's even newer orders. I'm going to actually backtrack for a second. I think that there was some serious, there's always been miscommunication, but there was serious miscommunication between myself and the nursing staff at my daughter's elementary school when it came to them trying to explain the types of orders that I should and could have if I wanted the ability to call and request the extra doses be given or request the different amounts of low saves be given. And so I made these super hyper specific addendum orders that I had submitted mid-September. And that is the thing that got the ball rolling where they were like, no, we refuse to follow these. We have to talk to your daughter's doctor about these. These are so complicated, blah, blah, blah. And I felt really frustrated. Like you freaking told me to write those. If you're going to tell me that like California Ed Code Law says I'm not allowed to call you and tell you to please give her an extra juice box, which is wild to me. Like that's, I'm not asking you to give her freaking a cancer drug, like give her an extra juice box if I see the need for it. And, you know, so I really felt stuck. Like you're telling me I can't do that. And then you tell me to write certain orders so that I can do that so that legally and within their licenses they're able to. And then you say no to those things. Like, the heck am I supposed to do? And I think the reality for it or of, like, that whole situation was I wanted orders that were so hyper-specific if the nursing staff and the health tech were going to have no idea what her blood sugar numbers were. Because if in my brain, I'm like, if you have no idea what they are and you don't know the trends, I have to be able to call in and tell you something hyper-specific, right? But now that they have the iPad in the health office, my new addendum orders that I sent in are so much more clear and simple. There's only like five unique orders for my daughter. And one of them, the biggest one is if blood sugar is between 70 and a hundred with a single or double arrow down, may treat with five to 20 grams of carbs. That is essentially what I have wanted all along. But when they did not have access to her numbers and the trends, putting that addendum order out there felt like it was futile. It wasn't going to do anything because they would not know. And it's like, I didn't want her phone to be alarming on her person under a hundred because sometimes she has really beautiful days where she sits at 80 for an hour and a half. That's unfair to her. It's unfair to her teachers. It's unfair to her classmates. And so now that the iPad is in the health office, that order set specifically relieves any and all anxiety surrounding this. Because I was able to explain to them, I was like, okay, this is awesome, but you see how she's 90 and it's in red right now, but it's a right arrow. So I was like, I'm really nervous that you guys are going to have alarm fatigue and not love this pilot program. And they were like, oh, well, we're really comfortable with if we notice that she's super flat at 90 or 85, lowering the alarm limit by five or 10 so that when it alarms, it's more actionable. And I was like, okay, that's great. So baseline is 100. Once she goes under 100, then you make the determination if you're adjusting the alarm limit or if you're gonna give her a low snack, right? And it just all feels like common sense. And I don't know, I feel better. Yeah, seriously. Well, I'm just really hoping that they kind of have that moment too of just being like, oh, duh, we should have done this months ago and this makes so much sense and hopefully it's just easier on everyone and more importantly, or I guess in addition, you have a great relationship with them going forward and it's not as tough in that way too. Yeah. I would love to move forward and I hope that little by little they realize that I'm normal and not psycho and you know, like I, I can't imagine dealing with, cause there is a special type of parent that's like, Oh my God, you know, I roll. I get it. And if I was going to have to be that parent, then so be it. But I'm not typically that parent. I'm a very like rational, reasonable person. I like to think fairly easy to get along. Yeah, it's like, I'm like, I would love to have a good relationship, but can you first and foremost keep my kid safe and then we can have a good relationship? Yeah. It's not too much to ask. The whole thing is just so unbelievable, but you're making so much real change and you're inspiring other people to try to create change, which is really cool to see too. Hoping. Yeah. We need to figure out how to hurry this pilot study along and then figure out who rewrites policy, how it's rewritten, and kind of force that change sooner rather than later. Because at the walk yesterday, we were talking to some parents who like one mom was saying she's in the same school district as we are. And she was saying that she is 100% responsible for monitoring all numbers and calling in for anything and everything. And it's like, I've seen that argument from some people in the comments of some of our videos that I've made about this. And I'm like, is that realistic? That's not realistic. Like people have jobs and they have things to do. Yes, of course I'm watching the numbers too, but I have meetings or like diabetes is so unpredictable that in the eight minutes it takes me to like move laundry over and start a new load. It's very possible that she was super flat at 90 and suddenly she's at 65. Like, yeah, you know, I don't, it's such an interesting conversation. And I think I was telling you yesterday that I did this TikTok video where I was asking people like, do you allow others? I was asking adults, obviously. Do you allow other people to follow your Dexcom? And I let my mom and a friend and my boyfriend follow me. And that not only in my opinion makes me feel better, but also makes them feel better because they worry about me. But it was really interesting to see the response in the comments of people just being so adamant that they will never, ever let anyone follow them. But there were a lot of different reasons. Some people just didn't want other people to worry about them. Other people, I think, felt insecure about their numbers and didn't want to share that at all. And then there's this idea that this is my thing. It's no one else's responsibility ever. So of course, I'm going to take on that burden forever and be the only one to ever manage it. And I think there's a little crossover in that thought with what some parents feel with their kids too. And I get that side as well. I don't ever want to burden anyone with it, but you're not burdening anyone. You're supposed to have this time as a mom while your child is at school and you have the right to that opportunity like other parents. But I think some parents do feel like, well, yeah, it's my kid. It's their diabetes. I can't put any of this on the school. But it's not even about putting it on them because you are watching all the time. I know you are still. It's about keeping her safe. I mean, to that point specifically, this is why my whole argument, Danny, my husband was laughing at me the other day because he was like, I wasn't going to say it. I was going to wait for you to say it. My whole argument this whole time has been public school is our only option and not really, but like it is going to be the only option that we pursue because public school has public funding for nurses and health techs. And so we are sending our child to a school that has a subset of paid people whose sole job it is to take care of the health and wellness of the children, you know? And so I don't feel any guilt or anything because it's like they are paid to take care of the health of the kids. Yeah. And so at preschool, when there was no nurse, no health tech, no nothing, yeah, I had a bit of guilt there. And so I was always at the ready for, I can come pick her up. It's a really hard day. I'm so sorry that it's been three days in a row of dropping. And they were so much more like, please stop. We've got it. It's okay. Her preschool teacher last year was like, I want more than anything for you to have three hours where you do not have to look at her numbers a single time. And it's just interesting to me that that human who has no nursing background and isn't a health tech and isn't paid to do this extra thing and also is in charge of 20 other four-year-olds. Yeah. Took it on to that degree. And then, yeah, I think that's why it was just such a shock to the system. But the reason why Danny made fun of me is like my whole thing this whole time has been, you know, we're not doing private school because we want the access to the public education system that has a publicly funded school nurse. We need the high quality nursing care for diabetes and we can't just like go to a private school or some other type of like educational entity and like hope that those people choose to take it seriously. And meanwhile, this has been the fight. And he was like, I wasn't going to say anything, babe. But man, that really bit you in the ass on your 40s. Well, yeah, we don't need to get all into this. But I think a lot of private schools do have really great nurses, which is why a lot of people, including my family, chose to send me there too, right? But you have to find the ones that have great nurses. You have to find them. And then on top of that, it's like, what if just in your area, the public schools that exist that are affordable don't have nurses? Because a lot of them don't. Right. So it's like either way you go, there's that chance. Yes. And then one of the ones who have great nurses are the ones that are like basically college tuition, which flat out we just can't afford public or private school regardless. Like that's just, it was the end all be all. We can't afford it. But. Oh my God. It's insane what some of those are charging now. It's really wild. I know. Like literally like $40,000 I've seen. It's painful. It's so painful. Anyway, that was a tangent. Okay, you go. What's your update on life and diabetes? I'm so happy that there is some positive updates there.
Diabetes Awareness and Imagining a Cure
00:22:18
Speaker
Well, it's Diabetes Awareness Month. I guess we should talk about that. Happy NDAM, everyone. We have some cool things. We have a giveaway going on right now on our page and we really just made it to give back to type 1 parents. Like it's a lot of fun things that aren't diabetes related which I just really wanted to do that. I feel like we always do diabetes giveaways but it's like cookie dough and candles and phone case and all this fun stuff. And then we also have our Just Pick It video up again, which we'd love and appreciate any shares to your stories on that one. But okay, not to bring it back to Breakthrough 2 and D again. I swear this is not an ad for them, but they put out that video. Did you watch the whole thing? Yeah, the one that's from the UK though. Yes. Yes. Oh my gosh. That made me so emotional. I feel like I haven't gotten that emotional about diabetes lately. And like in the moment, it made me kind of sad, but then I showed it to Kevin and for some reason showing it to him made me start crying. Like I was just basically go watch it if you haven't. It's also on the US page, but it was created by the UK breakthrough to UND and it's painfully well done. Like it's this great depiction of what diabetes is really like. And then this idea of what would diabetes look like or what would life look like if diabetes was not in the picture? And that's what really got me at the end. And it's because it's so simple. The clips of what diabetes would look like without diabetes. The mom with the kids crawling into bed in the morning, that's so simple. And that happens anyway, but they depicted it in such a way where it's like she didn't wake up four times for low blood sugar. Her kid doesn't feel like shit in the morning. Her kid feels well-rested and is coming to jump on her. It's really simple stuff. It's like someone grabbing the keys and walking out the door without having to think about what you're bringing with you or someone grabbing a bowl of yogurt and just eating it. Like, what? Yeah. That was crazy. That video came out and then the next day is when we switched from the Omnipod PDM to the Omnipod app on my daughter's phone. And that it was a tiny moment of like it was a sliver of like, Ooh, the burden has been lifted ever so slightly, you know? Yeah. Yeah. It's really crazy. I don't let myself think about what life would be like without it because I don't really remember life without it. But then when I just start to go there, I'm like, I literally can't comprehend what it's like to eat a bowl of ice cream without thinking a million things and just like being so hyper aware of all these factors. Can we get into that conversation for a second? Because somebody actually commented on one of my videos recently that I had made, I forget which one, saying, how do you feel about the idea of a cure for diabetes? Yeah. And so I'm curious from your perspective specifically, like pretend that a cure comes tomorrow, right? And then the next day you do not have it. Like, do you even want to go into that? Is that too painful? No, I mean, I've publicly said before that I always get nervous like, I, I can't, I can't say I want, I do want to cure. Obviously I want to cure, but there is a part of me that also, I think I just can't understand what that would really mean first off, but I've talked to other type ones too, that have also agreed that there's a part of them that would be sad if there was a cure because it is such a big part of our life and part of the community we've built and it's just so much who we are but yeah when I really think about like being able to just walk out and eat and all this stuff yeah I want that like how long would it take you I wonder to go eat out at a restaurant and finally stop subtly, like subconsciously counting carbs, thinking through your most recent activity, thinking through what you're doing after, you know, just every single thing. Like how long would it take for you to live life without diabetes where you walk into a pizzeria, sit down, order a pizza and eat? Yeah. Probably a long time. It's so ingrained in who I am now. I mean, 22 years. That's a long time to be doing this. So I'm just so, so used to it. Even little things, like if someone's carrying my bag for me and I'm walking without a purse, I notice how I'm so like, where's my thing? I always have to have that thing with me. That's such a minor example of what diabetes does to you. When I got the Mobi and I started wearing it on my arm, getting out of bed and being like, oh, I need to grab this thing next to me when I stand up, right? Or when I go to the bathroom, not having to worry about where it is. Am I going to mess with it? So that stuff reminds me how hyper aware I am every second of every day. So to think that extreme, it'd take me months, if not over a year, I think, to get used to it. See, and this is an interesting one for me because I'm not quite sure because I have my other daughter who doesn't live with it and so on the days that I just have her or like the couple hours in between her preschool pickup and my older daughter's school pickup I don't think about it it is just like handing it handing it over but I will say there was one point last night where I was plating pasta for both of them. And I went through Hattie's first and was counting in my head like, this isn't quite a cup. I don't have the energy to go pick up the measuring cup across the kitchen. Don't judge me. I never do that. I know, but sometimes it's like, I'll think to myself, like, why? I could literally just go get a measuring cup right now. And then I know for sure she's eating 40 grams or not, whatever. And then when I plated summers then I was also like and how much is that that's not quite enough a little extra and then I was like oh I don't I didn't have to do that you know yeah it's just part it would take you a while too I think but it is interesting that I don't know because if you're home with Danny you kind of know that both of you in theory have eyes on it if needed, right? But I think it's in a different way than like me knowing that Kevin has my Dexcom. Like he has it if like there's an under 55 alert, but like no one else is actively looking out for it, which you have a lot of time periods like that too. And so does Danny where it's just you or just him. him but But it's it's like like so so – like like I I can't can't let let it it go. go I I don't don't know it's so weird you can't let what go like like I can't ever be like oh I'm just not gonna pay attention to this or oh I think it's a different level of ingrained in me to where I think it would take longer to unwind it I don't know yeah absolutely but yeah I just don't ever really let myself think too much about a cure because I don't really believe it's coming.
Research and Future of Diabetes Cure
00:29:50
Speaker
Ever since I was first diagnosed, I've been told every year, oh, it's coming in the next 10 years and it doesn't. And I don't necessarily think there isn't already a cure out there. There could be. I do think it's possible something will come, but the likelihood that it will come be accessible for a lot of us right away, that's just so small. So I think it's definitely quite a bit a ways out, but I think technology is going to get better and better to where it feels just less heavy overall. Yeah, I totally agree with that. I do have maybe this is the naivety in me and the, you know, it's only been almost three years. So, but I feel's crazy to think about. Yeah. It's like 25 to 30 years away, you know? Yeah. When I went to some of the presentations about all the research they're doing at the TCOID conference, it was really cool to hear how many companies were working on things. But at the same time, they can't find a way as of now. Sorry, guys, the dogs are the dogs. They can't find a way to have you not have to take the immunosuppressants. That's the major issue right now that they're saying. Yeah. But I'm curious. I wonder if there's like, there's got to be some, I don't know. I don't know. I'm not even here. I hope you're right. Because I'm not. I hope you're right. And I just want everyone to know when I think of anyone else having diabetes, a thousand percent, I want to cure for everyone. I don't want anyone to have to deal with this. I hope it doesn't come across wrong. It's just a very weird feeling to imagine myself without it. And of course, I'm someone who's, it's my life and my job too. So it just feels very weird to be like, oh, this is all just gone. But of course, I do not want to deal with any of this. Actually, yesterday after you and I left, I was walking around a bit in the area and then I ended up having to get more food because I dropped. I had a pretty bad load. I was sitting in my car for a while. Part of it's because I was walking around, but I realized that I gave myself a load yesterday. I always talk about, yeah, I'll just give a little here, give a little there. But I realized that whenever we were eating lunch, I was very mindlessly giving insulin. And I know you know diabetes. There's no reason why I couldn't have been like, Amanda, I need a second to actually think about this. But it's just the reality of being in that social situation and just being like, oh, I'm fine. I'm just going to give more. And I don't think I comprehended how many times I just did that. So I looked back at how much I gave and I was like, I had a sandwich. Like I didn't need that much. Well, we did have that Arnold Palmer's like that had some sugar and I was concerned about rising from that. And the cookie. Yeah. But I definitely gave myself a low and I was like, why did I do this? And it was a moment of like, this is so hard to deal with when you're out and about and doing stuff and there's other things going on and that I would love love love to get rid of okay well next time we're out to eat I am going to I'm going to be the one who says don't talk to me until you're done thoughtfully dosing yourself okay well it's not your goal at all I mean I do this a lot of the time when I'm out because I just don't want to be high rather be low but I do not need to be that low so yeah I'm sorry it's okay I'm also saying it to remind parents that like we all do it to ourselves or to our kids or yeah I mean yesterday so my husband took our girls to a birthday party at a trampoline park and he sent me a list of what they had consumed, which was like pizza, a cupcake, ice cream, Capri Sun, a lollipop, like chips, like something else, you know? And he took me through all of his dosing strategies and she literally had eight separate doses in two and a half hours, you know, plus the trampoline. And so when we all got home about the same time and then he was like, oh, I'm going to go take some time for myself, get out of the house for a second. I was like, yeah, you got it. And she was really flat for a long time. And then suddenly she dropped by like 11. And I just knew that all of those doses were catching up with her and probably some of that leftover metabolism. And so I got her a plate of like snacks, you know, but it was healthy snacks and included half a banana because half a banana to save a low, like when you're catching it in the low 100s, I feel like it takes too long to digest if you're lower than that. But that plus peanut butter crackers, like she wolfed it and she went like 110, 99, 86, 80. And then she like came back up to 110 and was flat, flat, flat. But if I hadn't been paying attention or if I had fallen asleep, like I almost did. Yeah. we were all kind of like napping on the couch, watching TV on the couch together, then I wouldn't have caught it. And I just would have woken up to the alarm and it probably would have been a pretty bad low. So I think it just happens. And it's just a matter of when you catch the dropping. Exactly. And it's also frustrating because if all of those doses hadn't been given, maybe even for me yesterday or for Hattie, we probably would have gone high. That's hard. Yeah. I think I am a little burnt out. That made me realize it. I'm not burnt out where I'm like, oh my God, I hate this so much. I need to not do diabetes at all. But in my actions, I'm burnt out. I'm'm not being as methodical and careful and I'm just over it, you know? I feel that. Do you ever – so there are times when I feel burnt out like doing it for Hattie and all I want in that moment is to – this is going to be really controversial especially for what I preach. But all I want is to just do like three full days of low carb. I'm like, can you please just eat chicken and broccoli, please? Yeah. And it's because I know that that is easier to deal with. It just is. And she's five, so the answer is no to that. But on the random times where it's been a hard blood sugar day, and usually the hard blood sugar days come from aggressive toddler eating and just all the snacks, just saying yes to everything. And so I present it more as like your body now needs the healthy options. And so we're going to top off the day. Like we're going to end the day with these healthy options, eat what you want. And that it's such a relief, especially going into bedtime to like fill her with just protein and fiber. So do you ever get to that point with yourself where you're just like, nevermind, it's not worth it. I'm just going to. It happens, but I have to really get to that point. And it's usually just like, let me reset my morning, do no carbs in the morning. Yeah. where that goes. I think right now I'm just frustrated by the lack of patterns, the lack of repeated. Yeah. I think Laura, you're just my type, just posted a story about this a couple of weeks ago where she did one thing one day and the next thing did the same day and had completely different blood sugars. And she kind of just went on to be like, it just feels like sometimes there's no point in trying to recognize patterns and do all these things when it's just so different. And I know that I always talk like that, but it's honestly to hopefully like give people relief when things like that happens. It's like, it's so normal for diabetes to act that way. And I feel exhausted by trying to figure it out, especially as a girl. And I know I always talk about my period on this podcast, but like it really is making such a difference in my blood sugars. And it's so frustrating because it's like every single week is something else. And then every single period is different. And I just, you can't figure it out. And so it's exhausting. And that's, I think, a huge reason why I've just gone to the approach of just give insulin when I feel like I need it and give them out that I intuitively think I need. And I mean, yesterday I felt like things are out of control, but I was 94% in range. It didn't feel like I was 94% in range. I put so much work into that, you know, and I felt a really bad low within that too, which made me even more tired. And it was the first day of my cycle. And so I just felt out of it in general. So I really didn't want to deal with diabetes. So I'm exhausted and burnt out by that, but I also want to eat. So I can't just, for me, I'm like, I just don't like just eating low carb. It doesn't make me feel good. Especially when I'm at this point in my cycle and I'm craving more carbs, but I have been increasing my fiber a lot for other reasons, like more cholesterol and stuff as well, but it helps my blood sugar. So I don't know. I'm just, I am tired right now. Yeah. I feel that. Yeah. I'm sorry. I wish I could take it away from you too. I know. If you ever, if you were talking about like who, who we would let, like, you know, or you were talking about who you'd let follow you. But if you ever in a million years would hand me your Mobi or your phone, I could do it for you. That's so nice. It was such an interesting experience, experiment, because I count carbs. Yeah. But you give units, you know, based on what you like feel like you need. So it'd be really interesting to see if your carb ratios are dialed in or not. Okay. I do count carbs a little bit. Yesterday I asked you how many carbs you thought were in that croissant, remember? I put it in. I put it in, but then I just look at the total of insulin and I'm like I want 0.3 less or I want sure yeah but yeah I don't count in terms of like measuring and whatnot anymore um but you're right it would be so interesting I used to let or have a couple of families I babysat for in Austin follow me because I didn't have any family there and they live pretty close to the school so yeah I, I would always let you do that. The following thing is really interesting. My best friend follows and I forget a lot because she is a gem and never, ever, ever like checks in on me because she knows that it would be too much.
00:40:45
Speaker
And so when we hang out together, I'm reminded that she follows be because she'll get an alarm. And I'm like, oh my God, I'm so sorry. Like put it on silent or stop following or like I can teach you how to adjust the highs and lows so you don't get any alarms ever, but you still see the numbers. And she was like, no, it's important to me. And she's like, I do turn it off if it's like too much in the middle of the night. But I, anytime I get an alarm, I stop and think to myself, I wonder what she just ate. Ooh, she's probably having a yummy treat. What would I do in this situation? wow How much of a correction would I give? This low is pretty bad. I wonder how many low snacks they've given. like She's forcing herself to think through it, which I'm just so grateful for. But I refuse to feel guilty about it because she's her own person and she has made that decision. And the only reason why she has access to the follow app is because there have been times in the past where she watches the girls for us and she needs it on her phone, you know? Yeah. um And then my mom has it because my mom watches the girls all the time. And I think that's pretty much it. And like, and same thing, I think it's helpful for my mom to be able to see the the variation and the fact that like diabetes like skyrockets and plummets, whether you do everything perfectly or not, you know, it's just the reality of the disease. Yes. Oh, she's such a good friend. That's so, so nice. I know. I'm like, what are you doing? She doesn't even live in the same city anymore. Yeah, but she cares and she wants to learn. And that's the thing with all these comments I got, I'm like, people want to help. That's yeah so real. um But I accidentally opened the follow-up the other day instead of Dexcom. like I didn't even mean to. And I forgot how many random people I'm following, like kids that I babysat before, a couple of my friends. And it was just funny because I opened it. I'm like, oh, everyone's doing so great today. Like I have all the alarms turned off. Yeah. And you can do that. so Exactly. As you should. I also think actually that Hattie's preschool teacher still has it on her phone. So she like checks on occasion, which which is so sweet because she cares but I think her alarms are off because she doesn't actually like want to hear the alarms but I will say as Hattie gets older I am very open to meeting her where she's at and like not forcing her to let us follow her. yeah i don't know I don't know that my husband would say the same thing. He might be like, I am following you. yeah You can't kick me off. I just promise not to text you. Yeah. It's really scary. I think when they go to college, especially, like I know that I can't imagine being the kid that's like, no, you can't follow me in unless my parents were not cool about the boundaries that we set. That's so important. And I get why people take their parents off if they won't follow those. But yeah also, like I don't want my parents to be going through that kind of pain. And even if you're responsible, college is college. And that's where things can go wrong. And you just don't know when you're going to need something. But a couple of people commented that their parents called the ambulance on them when they were like in the 50s. And that's when they took them off, which I think is a... Yeah. Yeah. It's too much. I think that this can be the last thing and then we can sign off. But I think that my approach with her is going to be like as she's getting older, I really am going to try and back off. No micromanaging, you know, only ever checking in on your mental health. You know that like burnout's real. Let me know if you want me to take it back for a little bit, that kind of thing. And then surrounding, follow, having a conversation where I explained to her, I know that this must feel really weird and intrusive. And the last thing you're going to want is me being like, why are you so high or why are you low or whatever? So what is your boundary? Can I can i text you if you're LOW? Or let's say you're LOW, do you get two LOW readings to text me? And so i don't I back off. But if there's three LOWs in a row and I haven't heard from you, can I please call you, you know, call or text you in that moment? Because that's freaky. And it's also hard because like if she's having an LOW and she's on her own and she is taking care of it and it will come up, how hard is it to take out your phone and text? Like realistically, that must be hard, If you're truly in the 20s, 30s, or 40s, you must feel like, shit, that must be so hard. I think it's going to be up to her in that moment. Like, okay, i I understand why that's important. Yes, I will be able to text you or I i don't know if I'll be able to text you, but I can answer a phone call if you call me. That's so realistic and so great. And there are times where my first one of my first thoughts while I'm like going through the fridge trying to get something when I'm that low is, oh gosh, like my mom's worried or Kevin's worried or I see Kevin texting me. Are you okay? And I just think to myself, I know I'm fine. Take care of yourself first and then text them. Yeah. And I do. And it's fine. Like they'll be fine. Yeah. Yeah. I love the way you're going to handle it. It's more so about like never crossing a boundary and never getting to a point where it's a privilege, I think, for a child who then grows into an adult living with diabetes, chooses to let their parents continue to follow them. That is a privilege. That's not my right. And so I never want to overstep a boundary. And for her to get to this point where she's like, you crossed it, your privilege is revoked. So.
00:47:03
Speaker
both fine with tell yeah yeah Oh my gosh. All right. Okay. Real call. Oh yeah. I'm a hundred going down. I feel it actually. She is two 10 and spiking. So I need to figure out why and see if we need to adjust our carb ratios for school.
00:47:28
Speaker
sounds like a plan all right we'll see everyone soon yeah have a good week by i