Introduction and Disclaimer
00:00:00
Speaker
Hello and welcome to the 108 Podcast. I'm Amanda.
00:00:04
Speaker
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
Audience Pain Points from Instagram
00:00:14
Speaker
medical advice. We are only sharing from personal experience. And today, we are going to go through some of the pain points that you all submitted on Instagram. We really want to be providing in real time helpful information based on what you all are going through in the moment.
00:00:31
Speaker
There are a lot of things that are here. A lot. So we're just going to kind of choose some of them and like, especially some of them that are being repeated. Just go through our thoughts and how we've dealt with them because I definitely resonate with a lot of these pain points. Yeah, I'm sure.
Endocrinologists and Diabetes Management
00:00:52
Speaker
All right. Well, let's start with, this is a good one for you, I think, to help with lack of support from my endo to fine tune my omni-pod. And we were just talking yesterday on one of our better together coaching calls with a family who is really struggling with kind of being scolded by their endo if they're making their own changes or fine tuning things. And so, um, we know that's a really common one.
00:01:15
Speaker
Yeah, this one is really challenging. I, so first of all, like any time there's any scolding or tsk tsk or an eyebrow raise from an endo, no matter how well you're doing or no matter how confident you are,
00:01:30
Speaker
you're likely going to feel some sort of like split second feeling of shame or oh my gosh I'm doing something wrong or I'm gonna get in trouble or even please don't take my kids away from me kind of thing because society has created this
00:01:47
Speaker
this feeling that like doctors know all and their say is the end all be all. And while of course, oh my God, these people go to med school and they spend years and years and years in training and they have all this research and they're brilliant. And we wouldn't be where we are as a society dealing with type one without endocrinologists, but
00:02:13
Speaker
there is also the reality that parents live with their kids 24-7. So you are the one experiencing your child's unique needs and your unique set of circumstances every second of every day. So the endos that aren't necessarily willing to collaborate or
00:02:38
Speaker
believe you when you say like, oh, I do what you're telling me and I'm still not getting the results you're expecting. If there's ever an endo you're working with that's like, well, then you must be the problem. It's like, no, no, no, no. Hopefully the endo says, okay, so your child needs something different then. Let's figure out something different. And if that's not the response you immediately get from your endo, I encourage shopping around for a different one.
Technology Training Gaps for Endos
00:03:07
Speaker
But in terms of fine-tuning the Omnipod, one thing I will say is there are so many pumps on the market and the technology is constantly changing and it is a lot to ask these endocrinologists, especially those that don't live with type 1 diabetes themselves, to then understand all the ins and outs about every piece of technology.
00:03:34
Speaker
And they heavily rely on the salespeople and the training team at each individual company that is selling the pumps to do this level of training for you. But we know that
00:03:49
Speaker
there are major gaps missing. That's why we have the master classes and that's why we're offering support from people who live with it day in and day out because there are nuances. There's always going to be stuff with what you're experiencing in real life doesn't translate to what you can get from reading the text or the user manual.
00:04:13
Speaker
So, I think in this case, God, it's so hard.
Patient Success Against Doctor Skepticism
00:04:19
Speaker
Well, okay, I think both of us, at least when we were talking through it yesterday, you and I have both gone through the process of the endo being unsure about us doing anything and giving us a hard time about it. And then you kind of get over this hump where the proof's in the pudding, your A1C or your time and range.
00:04:35
Speaker
ends up looking a certain way because of the changes you made. And once you get to that point, there's only so much the doctor can say. And at least with the family we were talking with last night, they were mentioning that every time they call and are asking permission to get settings changed,
00:04:52
Speaker
They're talking to a different person because the end is not always available. And that person, especially if they're not your endo, they really don't know your day to day and your specific child. And that's where you really have to learn to trust your gut with those things. And I feel like with Omnipod, at least what I've learned from you talking about it is that there's so many levers to push and pull and try different things.
00:05:11
Speaker
And your endo might not be thinking of all of those possibilities. So I don't know. In my opinion, you can give yourself a little time to try something out. And if you're seeing positive results, trust yourself, know that it's good for you or for your child and hope that the endo is going to catch on to that.
Trusting Personal Instincts Over Medical Advice
00:05:28
Speaker
And if they don't.
00:05:29
Speaker
you have to eventually just know in your heart that you're doing the right thing. Like I definitely still get nervous when the doctors are like, well, why aren't you putting for me? It's like carbs into my pumps. Sometimes I'm bad about that or whatever. And sometimes you just got to be honest in the moment. And if they still aren't happy with it, it's like, okay, I'm going to push through this one hour appointment or however long it is probably not that long and then just go home and then it's fine again.
00:05:51
Speaker
Yeah, definitely. I also think here it's like I'm curious if you're asking like if your pain point is that you don't want to make any of the changes on your own because you're scared to and then when you ask the endo to help you tighten control the endo is just like no you're fine where you're at because that's a whole separate issue or if you are making changes and they're not working
00:06:16
Speaker
and you're asking the end-over guidance and the guidance is not there or they're unable to give it to you or they're scolding you for trying to change it. Either scenario is not good, but there is a different route for each one. Basically, one thing I will say is when I started to dive in and really make my own changes and
00:06:39
Speaker
Yeah, just take control of
Mismanagement and Parental Insight
00:06:41
Speaker
it. There was one point where not our endo, but somebody else who was seeing us that day just looked at the last two weeks, not the last three months, the last two weeks of information. And two weeks is not the big picture, especially for young kids, but for any type one diabetic.
00:07:02
Speaker
And she was like, oh, we're seeing a lot of lows after lunch. And I explained to her, yes, because in the last two weeks that you're looking at, her eating habits have suddenly changed. And so we are slowly trying to figure out what's going on. It's not a carb ratio issue. It's a, she's being bolist and she's not finishing her lunch issue. And that's a complete change in eating habit for her that happened overnight.
00:07:28
Speaker
So we're trying to figure it out little by little. And she goes, no, you need to change the ratio, change the ratio, change the ratio. And she just kept bringing it up. And I finally was like kind of broken down and I was like, okay, okay, I'll change it. I'll change it to what you're telling me to. And I did. And guess who went high and stayed high for three hours the next day?
00:07:48
Speaker
my kid because I followed an order from someone who looked at two weeks worth of graphs who doesn't live with my kid. It's just, I don't know.
Parental Authority in Diabetes Management
00:08:01
Speaker
And so that was a big turning point for me too, where I was like,
00:08:04
Speaker
I respect your education and your knowledge and your level of understanding of the disease process. I need you to respect the fact that I am her mother and that I live with her. And when I tell you we have a change in the last two weeks, that's what's happening. And instead of suggesting a change in carb ratios, she should have suggested now looking back, okay, let's try to dose for half the meal instead.
00:08:33
Speaker
Let's try to avoid some of these lows for her. So how about you try half the meal and then tack on the dose afterwards? Like, but that's never brought up. So, I don't know. Yeah. There's definitely been times too, where I just make the change in the office.
00:08:48
Speaker
not suggesting this, but then I go home and I change it back pretty soon because I realize it's not working. Well, yeah, we changed it back the next day. Yeah. I mean, they're thinking about you in that moment, but then you're so out of sight, out of mind as soon as that hour's gone.
00:09:04
Speaker
Okay, let's go to another one.
College Life and Diabetes
00:09:06
Speaker
That was a long one. Okay, I there's one that I'm very curious about your perspective Raquel and it is in uni and watching others have fun without having to think about sugars spontaneity is harder with type one. Can you speak on that?
00:09:23
Speaker
Yeah, it was harder for sure. I don't know. I have never been the biggest drinker and I think that's partially because I've been nervous about my diabetes, but there were times in college where I liked using diabetes as the excuse as to why I didn't want to drink, even though I totally could and there were days that I did. I definitely had my fair share of party moments.
00:09:46
Speaker
It was kind of nice to have that crutch, especially with people around me that knew I was already type one. So I didn't have to explain that. And if there was any peer pressure going on, then I could just be like, oh, it's so hard to deal with my blood sugar. I just don't want to. And like they immediately would shut up. But I feel like that's not exactly what this person's saying. The spontaneity piece has to be one of the hardest things about being type one.
00:10:07
Speaker
Especially as you get older and like when you're even dating and things like I struggle with it for sure and there's no way to really solve it other than just You kind of have to accept it and like try to be prepared and sometimes you just say f it I'm gonna let myself just be a little more spontaneous today and see what happens and sometimes that goes well and sometimes it doesn't or other times you just have to know yourself and when it's not worth and
00:10:31
Speaker
doing that spontaneous thing. So yeah, but I do remember just being really frustrated in college in general. I was a dance major, so I actually remember venting to my professors about this because we would have like yearly meetings where it was just me and all of my professors in a room talking. And they were just saying that like I was doing great and blah, blah, blah. And it was all good feedback. And they're like, you know, it's really crazy to see like how you're,
00:10:59
Speaker
showing up every day and dancing and you're fully there, even with type one. And it was all like in a positive way. I wasn't mad about that. But I said to them, I was like, it is so frustrating to me when all these other dancers show up and they're complaining that they don't feel good and their head hurts and they just like are too tired to stand at the ballet bar, whatever it is.
00:11:17
Speaker
because they were hungover and they did it to themselves and I'm just like I was up all night for a low blood sugar and I'm still here and I'm still doing it and it's just like the most frustrating thing I'm like they don't even know how easy they have it and obviously they have their own set of things but I was really frustrated about that because I just felt like so many college students were so careless and I was trying to stay on top of it and manage diabetes which is a full-time job so
00:11:42
Speaker
Yeah, I don't know if that even goes with the question, but there's not really a solution to it. It just sucks.
00:11:48
Speaker
Yeah, it sounds like you're acknowledging it and giving space for the pain point to exist. It reminds me slightly of now, the older I get, drinking really has a negative effect on me. I almost always feel poor in a physical way after drinking, even if it's just a glass of wine.
00:12:13
Speaker
And so I'm really, literally it feels like with each passing week, starting to one, pull more and more away from alcohol, but to find that balance where it's like, is this level of fun that I'm gonna have in the moment gonna be worth the headache or just like the day after anxiety tomorrow, you know?
00:12:39
Speaker
or just feeling like run down and taking care of kids the next day. So that is like not even close to what you guys have to go through, but it feels like a similar thread of just the balance of in that moment, like throwing caution to the wind and I'll just deal with it later. Or maybe this scenario is not actually as much fun as I think it might be. And so today's not the day to do that type of triggers.
00:13:09
Speaker
Plus, being hungover is kind of the same feeling like a blood sugar hangover. I feel like when you're having high blood sugar all night long or if you have like ups and downs that are really drastic, then the next day you kind of feel that same sort of rundown. So if you add alcohol into that, it's just like a double hangover. But yeah, I think it's exactly what you're saying. Sometimes you just have to weigh the pros and cons and see if it's worth it. But sometimes you do have to let yourself just go have fun and it is worth it and it's fine.
00:13:39
Speaker
learned what drinks work for me now and I think I've shared on here like when I have something with vodka my number just gets extremely steady and like beautiful and so I still have to be careful with dropping later and you know if it's a sugary drink but sometimes it just works out really well it doesn't always have to be a hard thing but I will say
00:13:58
Speaker
I've always been super nervous about getting so drunk to the point where I couldn't handle myself with my blood sugars and then the people around me might not really know what's going on or if they're all so drunk, like there's just so many levels there. Yeah. Yeah. That one freaks me out, which is why we will be guiding Hattie and teaching her how.
Frustration with Diabetes Tech Inaccuracy
00:14:20
Speaker
before she leaves the vest. Okay, let's look for another one. Dexcom. Can we just talk about Dexcom for a second?
00:14:34
Speaker
I am so pissed because our percentage of lows for 90 days is up to 4% and that is completely inaccurate. That's so wrong, yeah. It's not even close to true. We're probably at 1.5% or 2%. The amount of false low readings that we have that last for
00:15:00
Speaker
so many readings in a row. Like we've had two straight hours of like low, low, low, and we're doing finger pricks and eventually we're just like, nevermind. Like, yeah. You would change the sensor at that point? Uh, no, we have it. Isn't that stupid? Um, we at that point, that
00:15:18
Speaker
that specific scenario I'm talking about, we did like four finger pricks, trusted that it wasn't low, recalibrated, and then just turned off all alarms. And then eventually it did
00:15:33
Speaker
come back and then it was steady the rest of the 10 days. And part of the reason why we didn't change it is because it was like day two or three of the Dexcom. And we're just like, I don't want to poke her again. She doesn't want to be poked again. She could care less about finger pricks these days, which is so nice. Um, so yeah, but so frustrating.
00:15:56
Speaker
Yeah, Dexcom in general. I feel like we've gotten a lot of DMs about things not working. And when I was in Dallas or in Charleston for my sister's graduation with my whole family, I was staying in a house with my mom and my Dexcom did this thing where all night it said my Bluetooth was disconnected even though it wasn't. And it happened two nights in a row, but it was so funny because she came in and woke me up. She was like, I'm so sorry to wake you. You wouldn't be doing this if I was
00:16:19
Speaker
not here right now, but it's actually so sweet. And I was like, it's fine, but she was getting so many no data alerts and she was, or maybe, maybe it said I was low. I don't know. She was worried. And so yeah, that was weird. And I just restarted my phone a couple of days ago and then it didn't happen again, but I went to bed with it on and my Bluetooth was on the whole time. And
00:16:37
Speaker
I don't know, like things are just... Yeah, I've seen people talk about that a lot. The lows are like, that's a universally shared experience. What was you saying the last like two months?
00:16:50
Speaker
Dexcom's been kind of crapping out. I think so. Yeah. What's happening? What is happening? Yeah. I don't know if it's because they rolled out the G7 or what. Yeah. Yeah. Dr. Allen had said he's one of the doctors like in the space. He's an endocrinologist who does not have type one, but you would think that he does with the way he's like, he's so passionate.
00:17:14
Speaker
about just helping type ones. And I thought it was so interesting that he posted something where he was like, you know, it's basically, I'm going to botch exactly what he said. But what I took from it was that society has kind of like, we've as type ones and type one families, whatever, been like, okay, we're so grateful for the CGMs. Like,
00:17:40
Speaker
They're not super accurate, but we're so grateful. They're acting up, but at least it's not finger pricks. And so we're constantly forgiving them. And he was kind of like, no, it's been too many years and technology is too advanced to just accept this level of shittiness. And I was like, whoa, that's true. Yeah, it's so true.
Experimentation with Food and Diabetes
00:18:08
Speaker
They should be working consistently.
00:18:10
Speaker
Yes, that's crazy But it's such a good lesson to like with what you you use as the example of her lows It's showing more lows than not of detaching ourselves from that like number on the Dexcom clarity because Those lows weren't actually happening in Hattie's body right and a lot of times the numbers aren't extremely accurate So what we have to remember is that in our bodies things are better than they are on the graph Yes
00:18:37
Speaker
Okay, this is a good one, I think. My one-year-old wants to try new foods and I'm so cautious not knowing how he will spike. So spikes are scary when you're trying new foods, but...
00:18:51
Speaker
I really, really believe that if you're not seeing spikes every now and then and giving yourself the space to experiment, then that life diabetes balance is a little bit off, right? Like you have to allow for some safe-ish error in order to get to the other side, right? And be able to eat those foods. What do you think? Just preach. I just, you are seeing me smile at you. That is like so beautifully put.
00:19:21
Speaker
And I don't know that needs to go on a shirt. Like I'm serious. It's highs, not, not highs all the time with every single thing you eat. Like that's a problem with carb ratios and whatever, but occasional highs when trying new foods is a good thing. You are right because that indicates that you are trying. You're open to it.
00:19:50
Speaker
Every single time it doesn't go right, it's one more piece of knowledge as to how it could go right the next time. You are teaching your one-year-old, your very young child that food is not scary. We say yes and we adjust accordingly once we have the data that's given back to us.
00:20:11
Speaker
And I think a safe place to start is just starting with the carb count and you're just from there. And if it's a tough high, then you know that particular food needs more or maybe a split bowl is required if the high happens way later or
00:20:32
Speaker
you know just there's so many options and I remember thinking I haven't talked about this in a while. I actually don't know if I've ever said this out loud. There was one point within the first maybe four to five days after we were home from the hospital
00:20:47
Speaker
I grew up in a family that is very big on food is comfort, food is a part of life that is so good and whatever. There was a lot of focus on food, which was both good and bad. There were some negative aspects to it, looking back from my perspective that I internalized.
00:21:11
Speaker
Regardless of all of that, I have this relationship with food now as an adult where I let myself eat what I want and I fuel my body with the healthy food that it needs. And so I feel like this really great balance.
00:21:28
Speaker
When Hattie was first diagnosed, I was mourning this loss because I was so eager to teach her how to love food and love healthy food to nourish her body. So nourish your soul with the good stuff and nourish your body with the plants.
00:21:47
Speaker
Yeah, and just find the balance. And then when she was diagnosed, there was just so much fear thrown at us and everything was the diabetic menu, the sugar, fish, syrup, all this stuff. And I remember my dad saying to me, well, it's just a little bit of math, right? You just count some carbs and throw some insulin.
00:22:09
Speaker
And I was like, no, and he was like, but, but food, she has to be able to eat the food. And I, I was so triggered at that point. Like I was not okay. I was so depressed. I was in a state of like anger and denial, like totally intertwined at that point. And I just,
00:22:25
Speaker
I remember saying to him, it can't be. Food can no longer be fun and exciting. Life cannot revolve around food anymore. You have to stop. It has to be over. Food is going to fuel her body. We are going to adjust her diet so that her blood sugars are safe so she doesn't die.
00:22:42
Speaker
And so much of that now is because of the narrative, because of the experience, because of the teaching and the education. And I don't think any of it was from a malicious place. It was just how they taught us at, yeah, there. And then some of our baseline Googling on our own was very geared towards
00:23:09
Speaker
Yeah, the lower carb stuff or the counting every single carb or like diabetics can eat apple pie too, just make sure it's sugar-free. It's like, what the
Regaining Control and Freedom
00:23:20
Speaker
fuck? I have to make everything sugar-free at Thanksgiving? Anyway, sorry, that was such a tangent, but all to say that once I broke free of that and realized that that's actually not the life that we had to live,
00:23:34
Speaker
So much of the depression scaled away. I saw my child come back to life. I saw freedom open up again. I saw vacations and birthday parties. And I was just like, oh my God, this disease doesn't control us the way I thought it had to.
00:23:53
Speaker
Yes, yes. And I feel like I want to validate this mom specifically or dad. I don't know who submitted it because it is scary to see the spikes. I'm going to say something that I feel like I've said a couple of times last few weeks, but I feel like it hasn't been on type one together things.
00:24:09
Speaker
you can have the A1C that you want. And I wish someone told me this earlier, you can have the time and range you want and still see some spikes. And this is where it's like, I just wish I could just say my A1C, but I always feel weird about this, but I'm just going to say I have an A1C in the fives and I have for multiple years and I have a time and range that's generally over 80% with less than 2% lows. And I see a spike
00:24:33
Speaker
relatively often. Like I go over 180 probably at least once a day, but I get it back down quick and I see 200s and every now and then I see 300s and I think people just need to hear this because my body's still healthy. And so I think especially when these parents have super young, newly diagnosed kids, it feels like one spike's going to ruin their life, but it's just not that way. So I don't know if that can help parents just breathe a little bit through it.
00:24:59
Speaker
Yeah, that's totally true. I thought that the graph had to look like a very, like a perfect, you know, snake almost. And like between 90 and 120 in order to achieve an A1C in the fives and it doesn't.
00:25:21
Speaker
You know, your overnights should look like, not should, but if you want that, the trick is to get 12 hours overnight, nice and flat like that and lower. And then it's, yeah, and then not being over 180 for too, too long, but like spikes happen.
00:25:41
Speaker
They just do and it's okay. And they will forever probably. Yes. That's the truth. There are so many good ones.
Handling Painful Infusion Sites
00:25:48
Speaker
It's hard to choose, but I'll do this one quickly. Inserting true steel cannula and an accurate CGM. We already talked about CGMs, but with the true steel, because I do use that, that's like the steel cannula that's used for the tandem pumps.
00:26:02
Speaker
If you put it in a spot that's really painful, you can immediately take it out and put it in another spot because it's a steel cannula. Like I believe they actually tell you that through tandem, but don't take my word for that. Um, because usually if you find a good spot for it, it won't hurt at all. Like I don't even feel it, which is hard to imagine with the way that it looks. But if it's painful, it usually does stay painful. So I just want to put that out there. You can take it out right away, put it in another spot because it's just a needle essentially.
00:26:30
Speaker
Um, there's one here that says family not getting it and how that's a pain point.
Family Understanding and Boundaries
00:26:35
Speaker
We touched on that. I feel like I touched on that a little bit. Just a couple of minutes ago. It was funny about it, about the uncle or something. Oh my God.
00:26:47
Speaker
Yeah, so this one is really hard and I think that I think that wine Okay, gosh wine The diagnosis itself and like the life change itself is so challenging and it is okay to put up boundaries and fold in as a family and
00:27:08
Speaker
fold in, find strength for yourselves, your child, and not necessarily concern or burden yourself with making sure that everyone else feels okay and isn't scared and whatever. That's not your responsibility. Your responsibility is to tend to your child and to yourself first because you need to be the best that you possibly can so that you can show up for your kid.
00:27:34
Speaker
in that moment. And then when you feel more ready, kind of figuring out which family members, even if they're not getting it, which family members want to get it, they desperately do want to get it and it's coming from a place of true love and they're going to be willing to stop talking, open up and just listen and be there for you in whatever way it works for you and not whatever way it works for them.
00:28:04
Speaker
because the second a family member or even a close friend starts showing up, but only in a way that works for them, it's work for you. You already have so much work to do to keep your kid alive all of a sudden.
00:28:23
Speaker
I think that it is okay and healthy to put up that boundary. And that doesn't even mean verbalizing the boundary. That can just mean not necessarily sharing everything about your child's diabetes or not involving them or whatever, you know.
00:28:43
Speaker
Some of the ways that we have done this is one, what I'm most proud of and I am the most comfortable with is before big family vacations where we're going to be seeing extended family and everyone who's married into the family and extra friends and whatever, we will send a mass email.
00:29:06
Speaker
to everyone because then it's not addressed to one single person and then you feel like your bases are covered and it is as simple and polite as, hi everyone, we're so excited to see you. This is a quick but gentle reminder to please not feed my child anything without asking me first and to never like walk away with my child without letting me know first I need to hand you the Dexcom receiver or whatever.
00:29:36
Speaker
And that when I say we need time to pause because of low blood sugar, I really mean it. Low blood sugars are very scary and disorienting and we need time to get it back up. Just these outlines so that then you don't have to have that conversation over and over and over again.
00:29:58
Speaker
And the times that we've done that have only been received with, you got it, love it, thanks for the reminder, can't wait to see you guys. And then literally nothing happens on that family vacation that we don't want to happen. I love that so much. Yeah.
00:30:16
Speaker
that's been our easiest favorite way. And I think we'll continue to do that until Hattie can just kind of take it on her own and remember that every family interaction where they can see the realities of diabetes, like the real realities, is one more just like visual explanation or
00:30:41
Speaker
Yes. Piece of proof, I guess, that this stuff is real and hard. Yes. And from my perspective, growing up with it and being super close to my cousins and aunts, uncles, grandparents, like, obviously at a point when my grandparents or my aunt would watch me, like, I guess they had to understand more, but it was so different then. So it's not like they would understand anything now. But even coming up, like I'm doing a cousin's trip with, there's like seven or eight of us. And
00:31:10
Speaker
When I think about it, I'm like, I haven't even really considered the fact that they don't really get it. They don't really ask about it. Like I'm just their cousin and that's fine. And it's like totally fine with me that they don't get it. And we just don't really talk about it. They know that if I'm like, oh, I'm low, I need a few minutes to leave me alone. But it's also okay for them to not get it. I know it's different in certain situations where adults need to get it. But in terms of everyone in the family really grasping it, like they don't need to, you know, at a point.
00:31:37
Speaker
And if they do really want to know, this is part of why we created the 2ND diagnosis made simple self-paced course. We have a bunch of family members of families in our community that have taken it because sometimes you as the parent, you don't want to explain it. You don't have the capacity for that. But yeah, if they don't need to get it, like if they're not going to be the one watching your child, then maybe just let it be.
00:32:01
Speaker
Yeah, it's interesting. I'm curious if this came from a place of maybe in-laws or parents being like, I want to watch my grandkid. I want to help. Why won't you let me help? Because we hear that a lot in the community in DMs. A lot of times they say,
00:32:25
Speaker
yeah, why won't you let me? And it's like, well, have you asked what the reality is? Have you done the work to learn type 1 diabetes truly? And that doesn't necessarily mean like,
00:32:45
Speaker
going to nursing school and figuring out everything there is to know about type one, that just means asking the questions and having conversations that portrays to the family that you understand what's happening. And saying like, oh, they're low. Do you want me to go get the insulin pen is a direct indicator that you don't know what's going on. And no, you can't watch my kid now. Because if I left you,
00:33:13
Speaker
Yeah, because if I left you alone with my kid, and that is your thought process, and you made that decision without asking me, my kid dies. So no, in law, you can't watch my kid. Right, right. Yeah. It's hard. Yeah. One more. Yeah, you have time for sure.
Introducing Insulin Pumps to Children
00:33:35
Speaker
Ooh, here's one. Basically, getting on a pump I know is a good idea, but my kid doesn't want to, so I have to respect body autonomy. Yeah. Okay, I'm going to share an interesting perspective on this one because
00:33:53
Speaker
I should go back and ask my mom more specifics, but the way I remember this is that I didn't want to get on a pump. I was really resistant to any sorts of change. And it was a few conversations and seeing others out and about with pumps. And it was kind of like, just give this a try, Raquel. And if you hate it, we'll get off of it. And that was so amazing for me to have that choice. I think if I really, really would have pushed back and said, no, they would have
00:34:18
Speaker
respected that but looking back I am so so glad that they not forced but like really urgently pushed me to try it with the option to get off if I hated it because I have never looked back and it's given me so much freedom and obviously looking back on my health it's improved my health so much compared to what it likely would have been on MDI
00:34:42
Speaker
So I know this has to be so hard from the parent perspective, but if you can, I don't want to say bribe, but like work something out with your kid to be like, let's just try this, you know, we'll make it really exciting. Maybe you'll get to go pick out a fun toy or something.
00:34:56
Speaker
And just try it for one month. Like I just really think they're going to end up loving it because it takes diabetes kind of out of your life so much. Cause you don't have to, well, first of all, if you're a parent with a young kid, you're often able to bolus your kid without bugging them in the moment or waking them up. But when there's shots involved, like there's just so much less freedom in a variety of ways. There's less ability to give split boluses and just be as free with food and all the things. So.
00:35:24
Speaker
As someone who didn't want to get on a pump and got on a pump when I was, I think, seven or eight, I would almost say, really do what you can do to have your child try it. But I know that's not gentle parenting or whatever. People would probably suggest. That's so funny. I love it. It's very honest. It's very real. I think the key here is knowing your kid. And this is very much an age thing too.
00:35:53
Speaker
like figuring out how to have the discussion with your kid in a way that's developmentally appropriate for their age. So if they're super young, they might not be able to verbalize their fears, and so they're just saying no. And ultimately, I want to applaud this parent for respecting bodily autonomy.
00:36:11
Speaker
because oh my God, that is one of the hardest things with this freaking disease is equal parts teaching her that no means no. When I tell you no, you don't get to touch my body and hey Hattie, I'm freaking holding you down to painfully inject you. It is the worst and I'm starting therapy again because it's still eating away at me. It's very hard.
00:36:40
Speaker
But what I will say with this is if it's an older child, I'm curious if they are really resistant because they already feel so different than the idea of having one more thing on their body or the idea of like just something always touching them feels like the last straw, like it's just totally going to break their mental health.
00:37:07
Speaker
So yeah, my first thought would be to just open up the conversation again and ask why without being like, I want to have this conversation because I want you on a pump. And more so, I want to understand. I am on your side here. So I want to understand everything that's going through your head and your heart about this.
00:37:29
Speaker
And we'll just leave it at that and not try to use their explanation to then turn it around and always be the contrarian. Like, well, it would be so much better like this, don't you think? No, just let them talk. And then the other thing is involving them in the community and getting them around kids their own age who do have pumps on.
00:37:54
Speaker
Once Hattie saw a pump on other kids, I think it felt, it was still scary but less scary because she could visualize that someone else her size also had it on and they were still playing and they were still happy and they didn't cry. And the most helpful part was when it was both of their turns to eat
00:38:16
Speaker
and Hattie needed an injection, but her friend didn't. In her two-year-old brain, she understood, hey, my friend, he's not getting a poke right now, and I am, and I want that lifestyle instead. That is 100% true. So I refused to Dexcom for a long time, and they used to be a lot scarier to put on.
00:38:38
Speaker
Uh, my family totally respected that and never forced me to get on it, but I was a counselor at a diabetes camp. This was before I was really involved. It was like a one week thing. And it was when I was home from college one year and I was sitting with another counselor and it just clicked. I remember the moment where she had a Dexcom and she didn't have to do all these fingerprints and she could see her numbers all the time. And I was like, well, that actually kind of sounds nice. And then I wanted to get on it. And it was me coming to it on my own terms and
00:39:03
Speaker
That was it and actually I don't know if this person's in California, but at Camp Conrad
00:39:09
Speaker
they do a family camp over the weekend, or it was just like a weekend thing where the whole family can come. And I don't know if they do this with the normal camps too, I'd imagine they do, but they have like a 30 minute session where everyone gets to poke each other. That sounds funny, but like give each other shots, try on different sites. They have like test tandem sites, OmniPods. They of course don't have insulin in them, but you can put sites on each other. And I witnessed so many kids that day
00:39:35
Speaker
like, who were so scared to get on a pump, put it on their brother or their mom and then get it put on them and realize, oh, that didn't hurt. I'm going to get this now. So if your child's open to community things like that.
00:39:46
Speaker
that can completely change your life. Totally. That's a great call. Um, the other thing is you can always inquire like to your child's endo and say, Hey, I think I just want to learn more about the pumps. I think I might want to get the process started for my kid and you should usually get demos sent to your house and then your kid can play with an omni pod and just
00:40:10
Speaker
feel it, see how it is, put it up against their skin to see how big it might be. We didn't get actual tandem tubing or anything, but we got a little tin case that looked like an Altoid case that had the tandem T-Slim X2 pump interface on
00:40:27
Speaker
it. And so that was kind of cool for us because I was really figuring out like, is this going to work? And I was able to put the case like up against her waistband. And that was part of where I was like, she's too rough and tumble. I mean, you've seen Hattie, she runs into everything. She falls down all the time. She's always getting caught on stuff. Like a tandem pump would rip out of her all the time. But that's just her specifically. And so I don't know. That's another helpful option.
Conclusion and Farewell
00:40:59
Speaker
It's time, I think, but maybe we'll do this again one day because there are so many more. Oh my gosh. There were so many. It was so good. Okay. I'm going to go get my teeth cleaned. Yay. On fun. All right. We'll talk to everyone next week. Bye. Okay. Bye.