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Episode 74 - Sharing The Load Can Make Diabetes HARDER (ft. @t1d.dad)
93 Plays3 months ago
Amanda and her husband, Danny, dive into diabetes life lately. We hear about the scary Thanksgiving experience from Danny's perspective, a discussion on how friendships can be maintained after your child is diagnosed, and the fact that an A1C feelings like a test to prove your worthiness as a diabetes caretaker. Join this husband and wife team as they get into allllll the things.
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Transcript
Intro
00:00:23
Type One Together
Hi everyone, welcome back. Thanks for being here. Today's gonna be me, Amanda, and my husband Danny. We're just gonna catch up. Hi everyone. So yeah, let's I guess, I don't even know, we didn't write notes down, we didn't have a ah game plan so do you have any thoughts to start or do you want me to ask questions? I mean probably ask questions but I think overall it's been a weird diabetes couple weeks you guys talked about it last week with Thanksgiving and the sickness and all that but yeah this is the least confident or in control of diabetes I feel like I felt since we got the pump
00:01:08
Type One Together
Yeah, okay, so let's maybe dive into that a little bit because I feel like I got more comfortable with insulin faster than you did. And, you know, like having the the Thanksgiving event happen where we watched her eyes roll back um shook both of us, but I'm curious like how it has changed you if it has at all.
00:01:36
Type One Together
I mean, I feel like I've been on a pretty steady journey of getting more comfortable with insulin, getting more comfortable with pre-bolusing, feeling like I have a sixth sense of when her spikes are gonna stop, given how much insulin she has on board, what kind of activity level she has been doing and what food she had, and also knowing when her lows are gonna stop and how many carbs it takes to get them up. So I feel like all those things up until a couple of weeks ago It only been getting better and better throughout the years. But this specific stomach issue she had where, A, all those things just, I started to have no idea where it felt like she would start to level out on a high. I would think, okay, she's got a unit and a half on board. She's been playing a little bit. This is gonna turn around. And then all of a sudden she would start jumping by 15 again. Or she starts going low. I give her a pack of gummies.
00:02:34
Type One Together
And she just stays low for the next 10 minutes. I do a finger poke and it says 57, where usually I would expect it to say 75 or 85. So all those situations, I just felt like I lost a little bit of my an innate sense of, OK, this is this is what's going to happen from here. And so it started making me second guess a lot of my decisions as I was making them. And it feels like it's finally starting to come back a little bit today and yesterday. But this was the weirdest couple of weeks in a long time for me in terms of diabetes. And the other part, too, is just as she's gotten older, you know, and she's gotten more independence and a sense of herself and she's not just a toddler.
00:03:24
Type One Together
it's also felt really um unpredictable how much food she's going to eat. And so a lot of times I'm not dosing at all until I see her take a bite and have some kind of indication that she's going to keep eating whatever food that is. And so that just starts the roller coaster. And so that combined with the weirdness of not knowing how much her stomach's actually going to digest and all of her ratios changing and all that has just been a perfect storm of what is going on. Yeah. So I had changed her ratios from like her sick day ratios, which were very, very conservative. And I did that mainly
00:04:05
Type One Together
for school because usually I don't actually change ratios during the illness because it's a fleeting moment in time and we have the control to type in 20 grams and see a dose suggestion of 2.5 and just know that she needs one unit instead right now and then eventually when she's healthy she will need that 2.5 but because I can't count on school to like have that kind of sick sense I would never expect anyone else to know that we had to change the ratios. And of course, it's like we changed the ratios. and Okay, we're back, sorry. are We're of course trying to film this, or yeah, record this after the kids go to bed, but we have two toddlers, which means we put the kids to bed at a specific time, let's call it 7.30, and it might just be 8.10 p.m. and they are still coming out of the rooms, because that's our life right now.
00:05:05
Type One Together
anyway That one specifically was our younger daughter wanted to bring her doll in to put the clothes back on, so she somehow undressed.
00:05:16
Type One Together
OK. Hopefully, most of you could be understanding of that. um Anyway, so in terms of like changing the ratios, I went back to her pre-sickness ratios recently.
00:05:34
Type One Together
um but I think I overdid it on the dinner time ratio. And I overdid it on the dinner time ratio because once her sickness seemed to be resolved and she was digesting normally, we had like three nights of, um you know, post dinner and bedtime spikes that were reaching 250 and 300. So I went from what was her pre-illness ratio of like one to 18 for dinner, I went down to one to 17. And that seems to be too strong, but it could also be the correction factor for that time of day, because a lot of what's been happening is we are seeing late afternoon spikes, which is normal for her body.
00:06:26
Type One Together
and when we're not home or if we aren't catching it and or if someone else is with her or whatever, it can really run away. So tonight it ran away to almost 300. My mom was watching her and I knew my mom was making them pasta. So I said, can you pre-bowl this for 35 grams worth of pasta plus whatever the correction the pump suggests, given her 275 275 blood sugar. And it suggested 4.2.
00:06:56
Type One Together
And before she got sick, 4.2 units would be perfect for her to have a correction, get that blood sugar down from the high 200s, nearly 300, get it down going into dinnertime and then allow her to eat 35 to 40 grams worth of pasta. And then she would coast. That's typically what would happen. But tonight we saw her starting to drop fairly significantly. She was eating her pasta, it slowed slightly but then we still started or we still see drops of 10 and she was still hungry so she had a second helping of pasta so she probably had 60 60 to 75 grams worth of pasta and then went and took a bath which before the illness the bath was making her spike falsely
00:07:53
Type One Together
And now after the illness, the heat from the bath is making her drop every night. So she kept dropping by 10 or 11 and we gave her a little bit of a low snack, like juice or something, right? When she got out of the bath. And I don't know. It's just that we gave her the juice that had seven grams of carbs when she was I think like 71 and had just dropped by 11. And then the next reading was like 67 or something. I forget what it was. And she had this like juice on board and whatever, but we both were like, man, there's still a little over two units left of insulin on board. This might not be enough, but guess what? That freaking seven gram juice sure was enough. And then she went,
00:08:44
Type One Together
back up and started jumping by eight to 10. So it's just, I don't know, very confusing. I don't actually have a question for you. I'm just giving context to how frustrating diabetes is right now where none of it makes sense. And there's a million different factors. And the fact that there's a million different factors is not going to get any easier because we are in the middle of the holidays. Yeah. And I mean,
00:09:12
Type One Together
Adding another time of day and item where that's the case, too, is her night times have been so weird where it doesn't even feel like there is a magic number on any given night that'll get her from a stubborn high down to a normal range and then coast. It feels like there's a hairline between OK, this is going to cause her to go low in an hour and a half or I'm going to check in 30 minutes and she's up by 50 from where she was previously. And so, you know, she's 270 at night. Call it. I give her one point eight units like the pump suggests. I have no idea whether that's going to do nothing or whether that's going to plummet her. And so it's one of those things where most of the time I would say there's some gut feeling on, OK, this feels like the right amount based on what's been happening the last week. And right now is just not the case at all.
00:10:04
Type One Together
Yeah, so we're frustrated and we're tired. um But yeah, how do you how do you feel post Thanksgiving? How do you feel about diabetes in general? How do you feel about adding a family member to this chaos? Well, I'm very excited. and And it feels like the thing that I'm focusing on most right now is that Hattie Hattie seems happy. yeah And so Thanksgiving,
00:10:31
Type One Together
Christmas coming up, you're pregnant, we have stuff going on and we're moving soon. It feels like it's okay for diabetes to maybe fade into the background a little bit as long as we're keeping safety in mind. It doesn't need to be one of those times where we're super strict or harsh on ourselves for her time and range as long as we're nurturing all the parts about her that are non-diabetes related.
00:10:56
Type One Together
no really trying to be conscious about her relationship with food, her relationship with us, her relationship with her sister, trying to focus on all the good things in her life and, make sure that like when we talk about school, we're not only talking about, okay, so did you eat lunch in your classroom or in the nurse's office today? Like just really trying to treat her as much like just a normal kid as possible.
00:11:21
Type One Together
because it feels like that's how she wants to handle it. you know i don't Do you agree with that? Do you agree that she's not necessarily the type of person to want to talk about it all the time? Well, what's interesting is you know we have her in therapy and without divulging like too much information to protect her, um i I did warn her therapist that ah the event that happened at Thanksgiving happened and to just have it in the back of her mind. um And her therapist did indicate to me after the fact that she brought it up. It was the first thing she brought up. And so she hadn't said a word to us since Thanksgiving about that. And the fact that she walked into her play therapy session and it was the first thing that she wanted to share with her therapists
00:12:15
Type One Together
kind of hit me hard. It made me double and triple down on therapy. I think we will have maintenance therapy for our whole family, every individual, um for the foreseeable future. And then when Hattie's old enough to make her own decisions about when she needs it and how frequently and whatever will go, you know, when when she says.
00:12:40
Type One Together
by Yeah, I don't know. That was those interesting insight that I still am kind of chewing on and processing because she's definitely so much more your family. you know Whereas I'm the person, obviously, if you're listening to this or you're on Instagram at all watching me, I'm just like, here are my guts. Here's literally everything I think all the time. um And that's not my daughter. And so like trying to figure out how to support her and
00:13:10
Type One Together
find the right times, the right tools, the right people that she can divulge divulge in so that we're not building up a lifestyle lifetime's worth of diabetes, heartache, and challenges. Yeah, and that's a good point because I think that from what I've seen,
00:13:33
Type One Together
Okay, one more pause. Just brief intermission. I think that's something that I definitely want to make sure I'm conscious of too, because I think we're going to have similar communication styles where i I wish I was as verbal and could open up as well as you, but it's not necessarily how I naturally communicate and bond with people. I think I'm more of a time spent activities done together, but I want to make sure that She knows that she can talk about it if she wants and that she feels comfortable opening up and having a dialogue because I feel like that's going to be really important for her as she gets older. Yeah, I think that that's the the key here is like the ever so gentle like tug tug and of or push and pull of like her
00:14:23
Type One Together
recognizing when she needs to verbalize what she's feeling and when verbalizing what she's feeling is just like too much like the wound is too deep like it's it's too mentally draining because there's such a balance and it's just a weird position i never thought i would be in as a parent to a child this young you know i think we just keep getting slammed with like Hey, welcome to parenthood, bam, like health problems, bam, diabetes, diagnosis, almost didn't make it, like bam, your kid's five or four even, and could benefit from like play therapy. It's just like, what the fuck? Yeah, it's not in the manual. It's not in the manual. So I guess how are you doing with everything?
00:15:17
Type One Together
Diabetes wise, non-diabetes wise, I feel like going into the holidays with just there's a lot of stuff on our social calendar and life calendar. How are you holding up? Fine. definite really yeah I don't know. I'm in a ah mood right now of like not really feeling much, just very like go with the flow. Diabetes is irritating, but
00:15:46
Type One Together
I think that at the end of the weekend, we're recording this on a Sunday night, the end of a Sunday night when I've had a bunch of help from you, it always feels lighter for some reason. Not for some reason, because because I've had help, um but not lighter in like the sense of, oh, we're 95% range, so everything's good, but just lighter in the sense of like,
00:16:14
Type One Together
I haven't been the one to make every single decision. And so I can't take credit for every good dose and I can't blame myself for every bad dose. And I don't blame you for the, you know, the tough dosing or the tough sugars or whatever at all. So I just, I don't know. I kind of feel a little blank.
00:16:41
Type One Together
I'm tired right now. I'm excited for the baby. and And for some reason, I'm not nervous about her developing diabetes. And I don't know if that's foolish of me. think I think I just don't have room in my brain to even comprehend that right now because of all the stuff we have going on.
00:17:04
Type One Together
So that hasn't even, I haven't even spent time thinking about that. I think if it did happen, we would obviously, you know, be two or three years in the future at least, hopefully. And Hattie would be a lot more independent. I think it's something that right now, the thought of it feels unmanageable, but so did the thought of Hattie having diabetes right when she got diagnosed. So it's one of those things that would be really hard, but we would be able to figure it out and do it.
00:17:30
Type One Together
um Yeah, I have not thought about it that much. You haven't? Yeah, not really. I know that there's a higher chance of her developing it. And same with Summer, but maybe this is just me being uneducated about it. But I feel like since Hattie's was not necessarily one that she got because it runs in either of our families, that it's a lower chance. Is that true? You know?
00:17:57
Type One Together
i don't know I don't know that they do studies based on like differentiating people who have it in their family history versus people who don't. But I know that 95 95% of people who get diagnosed with diabetes do not have a family history or something crazy like that. and I don't know the actual percentage, so don't quote me on that one. But what I do know is a lot of people were asking,
00:18:25
Type One Together
me on dms in our DMs about like what what are the actual increased risks? What when are the what the data points for that? and The average person has a 0.4% chance of developing type 1 diabetes in their lifetime. But then if you are the sibling,
00:18:50
Type One Together
of someone who lives with type one, or if you're the child of someone who lives with type one, then you have a 5% chance of developing it. So it's a significant increase, but 5% is still so low. That means you have a 95% chance of not getting it, you know? And so I think I'm just kind of holding on to that because same, I can't I can't really let myself go there. It feels like a useless thought exercise to like sit and really chew on it. When we were drowning in all things diabetes and felt like it was truly the end of the world when she was first diagnosed and we decided like no more kids, we can't do this. Like in that moment, it's because it was also
00:19:43
Type One Together
terrifying and new and so overwhelming and while it's hard of course and there are moments that are overwhelming it is not it's not like game changer for whether or not we were going to bring one more kid into the world at least that's my take on choosing to have a third did you ever fully process the choice to have a third. Yeah. And I 100% agree with the fact that life is obviously still worth living with type 1 diabetes. And so I don't think that it's a weird choice because it's the, it almost feels like we're choosing to maybe have a child who might develop type 1 diabetes. And so like, is that,
00:20:32
Type One Together
a moral obligation on us to do that or not do that. But that also feels like since it's A, such a low percentage and B, since life is still so valuable and worth living with diabetes, it almost feels like it just takes that whole question out of the equation anyway. um Because I think that we've seen Hattie live such a wonderful life and be such a happy kid who obviously is dealing with her own diagnosis in her own ways, but overall, I would say she's still a happy kid and is very kind and loving to others. So it feels like bringing another kid into the world would be, all the pros would way outweigh all the cons, both from our perspective and from their perspective. And I think that they will hopefully be happy we made that choice too.
00:21:20
Type One Together
But again, it's a weird moral dilemma of do you bring a child into the world knowing that there's an increased chance of this disease developing? So I think I've gotten on board with it. I mean, I've 100% gotten on board with it. But there's there's just still always that weird thought in the back of my head of, OK, this is something that you're knowingly doing, knowing that there might be this complicating outcome that happens, but I think that the pros and cons are way worth it for us and for them. Yeah, it's interesting. I had a thought we have a friend ah who will be going through IVF and they were they were asking us like one of the friends lives with diabetes. And so they're like, would you you know, we have this opportunity to genetically screen every single embryo that we create
00:22:15
Type One Together
And part of that screening includes having the gene for developing type one. So is that something you would do? Like they, you know, they were just curious or thought. And my thought was yes. And my thought ah surrounding this was because if you have, if you think about it, let's say you you have five embryos, five children, whatever, and four of them have the gene for diabetes and one does not. Obviously, let's but's give the kid who does not have diabetes that this sounds bad.
00:22:58
Type One Together
But of course, we'll come no, no, we're not going to cut it because it's too much work. I don't want to cut it. but we're We're going like obviously, you know, the the our friends were like, we would obviously choose the embryo that doesn't have the chance for developing diabetes if everything else else is healthy. And my thought and my like per thought provoking question to them was, let's say all five have the gene for type one, but four of them have like something else included.
00:23:33
Type One Together
I personally would still choose the child who is the most healthy and also has the gene for type one over just like none of them at all, you know? Like, and when I thought about it like that, it's like, type one is not, it's so awful and hard and challenging, of course, but it's not a reason to choose to not have a child if you so desperately want a child and if you are, you know, the kind of person and the kind of parent who is going to give your everything to that kid. So I don't know. I think that's kind of where we landed with our decision to go for our third and final.
00:24:20
Type One Together
Agreed. Yeah. And I think that it it kind of goes with the thought that you can never really know anything about your future child's life before they're born. And there's never going to ever be a point where you know for sure that nothing bad is ever going to happen to them. So all you can really do is give them all the tools that they need and try and guide them on a happy, healthy life. And so I I don't feel like it's any different with someone who is living with diabetes versus anyone who has any other hardship that makes their life not, you know, 100% the easiest life in the world. And I almost think that
00:24:59
Type One Together
like everyone is going to go through some type of hardship. And if you don't go through any hardship, then you don't have a whole lot of opportunities to build strong character and build empathy and find a way to care about those who like might have to struggle in ways that aren't their fault. And so I think that there's a lot of ways that I've learned a ton about just like people with disabilities and people with things that make their lives difficult. And it's made me reevaluate how I treat people in a lot of situations. and It's made me reevaluate what's important. I mean,
00:25:35
Type One Together
The biggest thing that I think we've talked about a lot is all the protections Hattie has at school under the ADA. That was just something I had never really thought about all that much before. And so dealing with all that has made me realize how critical that is for people's lives. And so it's all these things that you take for granted until you realize that you know people depend on this stuff. And I guess where I'm going with all that, that was kind of rambling.
00:26:03
Type One Together
I think that like this hardship, either as the person with diabetes or you know parenting a kid with diabetes, it like has the opportunity to expand your you mind a little bit and expand your empathy and make you you know give you tools to be a better person than if you know there's nothing hard that happens to you in your life.
00:26:22
Type One Together
and so choosing whether to have a third kid with diabetes, potentially. um I think that's part of what made it an easy decision to say yes, is that, you know, there's always going to be some type of hardship, there's always going to be obstacles. And so this is one that, you know, doesn't have to rule your life. It's a giant part of your life. But I think there's a lot of pros that can come from it, too. Yeah, that's crazy. I hadn't thought about the fact that like how it's affected me as a person and how I view people living with disabilities and my thought process and everything. so so I always felt like I was a kind person, like I never went out of my way to make anyone feel badly, very much so like you don't have anything nice to say, don't say it at all kind of person, but then
00:27:16
Type One Together
with Hattie, recognizing that there is so much fight like exhaustive fight that goes into making sure a person who has disabilities that they have no control over has equal access to live a comfortable life. like That's so necessary for the human race.
00:27:43
Type One Together
So it's just a, yeah, that's an interesting thought. It's definitely changed, changed us for the better, I guess, hopefully, I don't know. And it made me realize I will never, ever understand everyone's pain points in the way that it,
00:28:06
Type One Together
is very apparent that people who do not know anything about type one and aren't affected by it can never truly understand the depths of exhaustive like work and pain that go into managing the disease. you know And so they can be as well-meaning as possible, but they'll never get it. And so I think that that's another thing that we have held on to is when we see other people struggling like we treat them with love and kindness and a lot of benefit of the doubt. And also this recognition of I will never know what your daily struggle is truly like. Yeah, and and it's a weird mix too because it is a combination of
00:28:52
Type One Together
really wanting to give people more of a break because you never know what they're going through, but then also seeing the world in a new way where even if you're going through something difficult, it never gives you the right to be a dick to somebody else. Because right, everyone's going through something tough, but everyone's going through something tough. So even if you have a hardship in your life, you know there were a lot of times where I felt just so tired and isolated and overwhelmed but still wanted to keep the mindset of you know I'm going to use this to try and I don't know give myself better perspective on the world around me and not
00:29:32
Type One Together
to just shut everybody off and be an angry person and be a mean person. And I think that's a really crucial point in my journey of, okay, here's a really difficult couple of years. is This is something that's gonna break me down, because there were a lot of points where it just felt like a never ending arm wrestling match that I could never win. And know I think now that we're a little bit on the other side of it, where we feel like we have it together a little bit more,
00:30:01
Type One Together
It was a, you know, fork in the road. Do you let this kind of crumble you or do you let this be something that you can build from and, you know, see is a um almost like a meditative period of life where you just get to refocus on what's really important and refocus on how you want this to shape you and and treat other people going forward.
00:30:22
Type One Together
Yeah, that's a good point. It's interesting. This is another topic that has been brought up a lot in the community is people asking, like, how do you maintain friendships with people who just don't get it? And, you know, like, if there are people in your life who don't get it and are trying to get it, like, how can you not feel some sort of, like, frustration or anger towards those people? And I've had this like realization recently because now that we are three years almost post-diagnosis and we are comfortable with certain family members watching the girls and you know we've like found our routine, we get to go out a bit more. and For those of you who don't know, Danny and I met in high school and we still have a handful of our very close high school friends living in San Diego.
00:31:17
Type One Together
and when Hattie was born and then COVID happened, we definitely retreated. And right when we were just feeling ready to come back out from the rock we were living under um is when she was diagnosed with diabetes. And so we, we just turned into like, not necessarily the best kind of friends and our friends, um,
00:31:47
Type One Together
pulled away slightly, but not pulled away in like a negative way. I think they they just kept living their lives and they're in very different life stages than we are. And so they just kept on living and slowly but surely we stopped getting the invites, which makes sense. We're of course not able to go out every Friday night. We can't just say yes to a last minute trip for skiing and whatever. It makes sense. But we stopped and sort of thought to ourselves,
00:32:16
Type One Together
a little bit there like, man, are we ever going to be able to, you know, find common ground, like come back to what has made us so connected prior. And I recently got lunch with a friend from this high school group that I'm talking about. And I was just like, you know, it's so good to like catch up with you. I miss you. And she's like, well, yeah, you've had,
00:32:41
Type One Together
so much shit happening in your life like it kind of it feels like you're you're coming up for air finally and i was like i'm sorry i've been a bad friend she's like you haven't been a bad friend you had a child another child and then your child got diagnosed with something very severe and almost lost her life of course we didn't sit here faulting you guys for not coming around for like a night out on the town for drinks and music like we knew you would come back when you were ready. And so I think that it was just that amount of like love and grace from this friend and that friend group in general made me realize that they were probably sitting there waiting for us to ask for help, but we weren't asking. And so then they just decided we will welcome them back with open arms when they're ready to come back because
00:33:38
Type One Together
they're not going to ask for help. So I I don't know for anyone who's struggling with that, maybe evaluate like what those friendships are capable of, what those those people are capable of and how they might be able to show up for you and recognize that you might need to ask and, or it might just not be the season and you can always fall back to them. And sometimes friends are only in your life for chapters at a time and that's okay too.
00:34:07
Type One Together
And that's a really good point. I mean, I think that if we had asked any of them to come help, they would have shown up and done their best. But I think for all the entire period that we were kind kind of in our own bomb shelter, it felt overwhelming to teach new people all the things they needed to know that would truly lighten the load. And so, yeah, I am so happy that all of that worked out the way it did where it feels like we didn't skip a beat. And I think it, everything kind of made sense the way it happened. And I think um I'm thinking through a lot of my friendships and the people I'm close with and the people I'm not necessarily close with. And I think it's different for guys, for any, any 2ND dads listening. You know, I, when I'm connecting with my friends that I haven't seen in a while, like if they're college friends and live across the country,
00:34:59
Type One Together
and we talk on the phone, a lot of times I wanna talk about the good stuff and catch up and, you know, feel like we're hanging out again. And I don't necessarily wanna bog it down with a ton of negativity. I think there's, I definitely do when I feel like I need to talk about it, but I don't know, I think that there's a little bit, it's a little bit less natural to wanna get into the, hey,
00:35:24
Type One Together
How are you doing with diabetes? What things are are bothering you? you know What are things that are overwhelming you? I don't necessarily think that that's my communication style with my friends. And I think that um it is like sometimes in certain settings, but not necessarily on the phone or for a light hangout. I mean, I think that's gotta be, you know we're together for a weekend for a wedding and there's a certain period where we start talking about stuff like that. And that's where I don't know if that's,
00:35:53
Type One Together
a failing or not or something I need to work on, but I I think a lot of it is people just don't want to, I know, necessarily like bring down the mood when you only get to talk to somebody for a short amount of time, but it is something that is important to get off my chest. So yeah, I'm kind of rambling on this one too, but I don't know where and don't know where the right balance is. And I think with something like diabetes, a lot of people,
00:36:19
Type One Together
don't necessarily know a lot off the bat. So it's a full education process. you know People don't know the difference between type 1 or type 2 unless they've been around it. And a lot of times, maybe they don't want to feel stupid and ask the wrong question, or they don't even know enough to start the conversation. So I think I'd offer that more often than not, just to remove that barrier for conversation.
00:36:44
Type One Together
But yeah, I think it's it's felt good when I've been able to get stuff off my chest with people who aren't necessarily related to it, but there is an initial learning curve that feels like a lot of mental work a lot of the time. Do any of your friends actually ask the pointed questions though? And if they start to ask, do you give them the one word answers or do you dive in? Because A friend who I'm very comfortable with, who I'm close with says, how's Hattie? How are things going with diabetes? And diabetes is hard in that moment. I say, it's freaking hard the other day, blah, blah, blah, blah, blah, blah. So you would you just be like, yeah, she's fine. it I mean, it depends on the timing, I think. If I know we have at least half an hour to talk, I'll dive into it. And I think there's four to six people that I would really dive into it with.
00:37:39
Type One Together
And that's only gotten better as we've all gotten older too. So it's not necessarily something I would have dived into when I was 23, but now that everyone has a little bit more life experience too and everyone wants to go deeper beneath the surface, yeah, there's definitely my handful of friends that I would get into that conversation with and they would have useful feedback and we'd be able to kind of bat ideas off each other.
00:38:08
Type One Together
Well, if any of Danny's friends are listening, he likes to golf, which takes four freaking hours. So plenty of time to ask about diabetes. Okay. I'm going to move us on from this topic. Um, my last thing, cause I feel like we only have time to talk about one more thing here is I'm curious. I'm kind of going to like go back a tiny bit. So.
00:38:34
Type One Together
I usually am the one to take Howdy to all of her endo appointments, right? And so I'm the one who is having these conversations with either the NP or the doc herself and explaining like, you know, we, we of course get the, oh, we're, she was really high here like two weeks ago. It's like, well, you're only looking at the last two weeks and not the last 90 days of data. And yes, she was high cause it was Christmas or whatever.
00:39:04
Type One Together
You know, but I'm sitting there answering all the questions, explaining like rationale behind our care, almost trying to like prove time and time again why we're capable of doing these things. And I feel like the proof is in the pudding when they bring back the A1C. And so earlier you said something about like, you know, it's just not the season for like perfect numbers, which it's not, it's totally not, but I will say i it's been in the back of my mind and it's been sitting heavy since November because our next appointment is in February. So I know that the A1C in February is going to be a collection of November, December, January. And, you know, these these have been hard. And so with every passing day that's not good, I have a subconscious like taking time bomb.
00:40:00
Type One Together
that's kind of like get back on track, get back on track so that I can offset the season that was not great and prove that I'm worthy of like having the kind of freedom that I do from my end. I need to unpack that one. Yeah, I know. And also in therapy, which I've said five million times on this podcast. But yeah, I just, it's very, so it's very,
00:40:29
Type One Together
subliminal, it's like low on the list of priorities, but it's there constantly. And. I don't know, I'm just curious, do you feel that? And if you don't feel it, do you think it's because you don't have to have the interactions and you don't make all the ratio changes and stuff? Yeah, I mean, I i think I'm 100 percent one step removed from where you are, because I'm not talking to the endo face to face. And so I feel like if I knew that there was a a future where, you know, I'm sure I'll go to endo appointments, but a lot of times they're just in the middle of work days. And so if I knew that in six weeks I had to go face to face at the endo and kind of defend her A1C, I would feel a lot more anxious, too. So definitely. And I mean, totally right about ratios, too, where
00:41:23
Type One Together
I think one part of diabetes care is interpreting the graphs, interpreting eating habits, figuring out what she likes to eat, figuring out how early to pre-bloss, all that. But all that is fully built on the foundation of what the ratios are and you are the primary ratio changer. and so I feel like that makes sense that there's a way deeper sense of responsibility and anxiety about her numbers because the ratios are the foundation for how her numbers go and algorithm works and all that. And so I completely recognize that the same way we talk about
00:42:05
Type One Together
If I dose for breakfast and she goes high or low, I feel more responsible. I feel like there's a blanket underlying, you must feel the responsibility of her numbers because you're setting all the ratios. And we talk about it sometimes, but I feel like I'm never the one to actually push the buttons. How do you feel about that? Do you you wish that I was more ah proactive about that? Not necessarily, because I don't,
00:42:28
Type One Together
i I do think that at some point too many cooks in the kitchen is like not good for diabetes. It's just too hard, you know? And so I think we have found our balance that works for us in terms of the amount that you take over and like the inconsistencies of like you dose for breakfast, I dose for snack, you get lunch, I get snack, I correct the high, you save the blow. Like those days are shit.
00:42:56
Type One Together
They just are, you know, because we, even if we are communicating, we don't have, I don't have my decision-making thought process and rationale for every single diabetes decision that has been made that day. And so there's just like a lack of information and that's fine because we have both conceded to, okay, the days we are doing it together.
00:43:24
Type One Together
her time and range is very likely not going to be 90%, which is like the on the more standard side when one of us is doing it 100%. I've never thought about that. I've never thought about the fact that when we switch off, it's usually worse. But it makes a ton of sense because there's less just accumulated context for that specific day in each of our brains. And it's You're right, we're communicating, but it's not as natural as these numbers are my responsibility all day. And I feel like, yeah, definitely the numbers are better, but the stress is higher, if that makes sense. But the, if we were to do one or the other, like one of those strategies or the other all the time, I think the stress would be higher than switching off between having it be, you know, my day all day and then your day all day.
00:44:10
Type One Together
Um, because that wears you down the on the decision fatigue, but switching off and having the days where there's no real ownership over and over again and having slightly worse numbers, then that's the, you know, the A1C result fatigue. And so I think it's, I think we're finding a good balance of that. Well, what's interesting with like the way that our life works is I start to feel.
00:44:38
Type One Together
by the end of like, so the end of this weekend, right tonight, I'm, I'm starting to get that kind of like itch, this like itch in me where I'm just like, I want full control again. Like I've had my break. I got my time to read. I got to sleep. I feel more rested. Now my, the the small part of me that is Taipei is like, give it back so I can like get us back on track and I know that if I went to work tomorrow on Monday, that you would get her back on track if you had every decision, you know, for, you know, whatever for the week. But I think the hard part that I haven't, well, I've acknowledged obviously for different reasons, but like something significant is the fact that she started school and we don't have the kind of control that we used to with preschool because with preschool,
00:45:34
Type One Together
They made really smart decisions on their own, but I also had the ability to text and intervene at any point in time. And so because we don't have that option at public school, her numbers are better, but there's this extra pressure for me, I feel like on school days, Monday through Friday, to pack snacks picture perfectly.
00:46:00
Type One Together
And to make sure those ratios are perfectly dialed in, in order to set her up for success so that we can then go into the weekends where I I get my like break, ah you know? And so, and it's, I also think that there's the A1C conversation is interesting and challenging right now because our six month endo appointment got canceled because of stupid insurance issues. That was not our fall. It was like the hospitals and the doctor's office, like everything was late and whatever. And so our appointment that's in February will be one full year since last time she was seen. And I feel all this pressure, especially with type one together growing so much.
00:46:50
Type One Together
And with the fact that I made such a big stink and I was with school and I was constantly talking to her children's hospital and they ended up having the children's hospital, ended up sitting down for a conversation with San Diego Unified. Like they know who I am and they know this platform and they know things that I say here, you know, which like I,
00:47:18
Type One Together
I share honestly about our experience. And so there's this, there's a deep level of discomfort. If I show up in our A1C, which was 5.5 is now seven, fuck, you know, like there's pressure, there's definitely pressure there, even though I preach and I truly believe that like, there are going to be stages in life where your A1C ebbs and flows and I'm fully expecting having to go up because so much has changed since the last time we saw them. But yeah, I don't know. And maybe this is just pressure I've put on myself and I'm talking to nobody at the Children's Hospital. Maybe not a single person is listening to anything I say at all, but I don't think that's a case. I think that makes sense. It's I I feel like common to have that little bit of imposter syndrome, maybe. And so
00:48:14
Type One Together
Her blood sugars have been so good, and if if we show up and the numbers aren't great, then yeah, I feel like you'll, guess, feel a little bit of that, but I don't think that's the case. And I think there's just been so much that's outside of our control to affect our numbers that's not you know strategy and care related. I think it's just the volatile nature of a five-year-old with type 1 diabetes is really hard to control and her body's changing so much. The sicknesses this fall have been insane. yeah Like our younger daughter got it too, just this weird stomach bug. And so I totally understand why you feel that way. And I think it's valid in a way. And I think that even if there is not a great number, you shouldn't beat yourself up because there's just so many factors at play, especially with her at school for half the day for five days a week or two thirds of the day.
00:49:09
Type One Together
Yeah, well, those are my inner thoughts, so I I don't know. I think we're gonna end all now, and I have nothing else to say.
00:49:20
Type One Together
um But we'll end with a roll call. I can't believe we just talked for 50 minutes. At the 15 minute mark, I was like, how are we gonna talk for another 15 minutes? And now we're 50 minutes into it.
00:49:31
Type One Together
why we're on So if you are still listening, God bless. Hattie is 114, right arrow. Probably falling asleep, which means she will spike very soon. love to Yeah. Who knows? She might drop, she might spike. I have no idea. but All right. Thanks for listening to our episode of Pillow Talk. Bye everybody. Bye.