#1669 14 Months
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Stage-two type 1, nursing-school instincts, daycare roadblocks, and a familyโs grit after a wrongful CPS nightmareโHannahโs candid guide to catching signs early and advocating without apology.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner  0:00
Hello friends and welcome back to another episode of The Juicebox podcast.
Hannah  0:14
My name is Hannah Marion. I am a mom to a two year old who's currently in stage two of type one diabetes, and we discovered that with me being in nursing school and kind of picking up on the signs, if
Scott Benner  0:29
this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcast or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com up in the menu and look for bold beginnings, the diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. Just in time for the holidays, cozy Earth is back with a great offer for Juicebox podcast listeners. That's right. Black Friday has come early at cozy earth.com and right now you can stack my code Juicebox on top of their site wide sale, giving you up to 40% off in savings. These deals will not last, so start your holiday shopping today by going to cozy earth.com and using the offer code Juicebox at checkout. A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod five now with my link, omnipod.com/juicebox
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Hannah  2:20
My name is Hannah Marion. I am a mom to a two year old who's currently in stage two of type one diabetes. And we discovered that with me being in nursing school and kind of picking up on the signs,
Scott Benner  2:35
wait a second. So you have just one, one kid, I have two, two. Okay, but this is my youngest. Okay, your two year old. Your youngest. She, right. He, he Sorry. Okay, so you're in nursing How old are you? I am 26 oh, what got you into nursing school? Now, you know,
Hannah  2:52
I have always wanted to. I went a whole different path for a while. Kind of got back to it because I said, How can I tell my kids to follow their dreams if I don't follow mine. So here I am following mine, but definitely kind of helped out
Scott Benner  3:06
very nice. So you wanted to be a nurse initially, but you decided on something else and then pivoted. Yes, exactly. You don't have to tell me what those things were, but like, did you do it because you thought it was going to be more like, stable or like, why did you pivot away from the thing you dreamt of to do something different?
Hannah  3:24
I had some health issues myself at the time. I was actually previously in nursing school for a couple of months doing just like pre requisite classes, and then started having some seizures. So I had to drop out of school because of that, because obviously I can't be seizing in nursing school. So once those cleared up, I kind of just jumped back into the work field with wherever I thought things would work out for me, and have bounced my way around to different fields and ended up back at nursing
Scott Benner  3:53
Did you ever figure out what the seizures were? The seizures were about?
Hannah  3:58
Yes, I have pots, and they were actually a form of syncope for me.
Speaker 1  4:01
Oh, okay, so you weren't. You were passing out, yes, but it presented as a seizure.
Scott Benner  4:07
Gotcha pods. How did they define that? How do you get a diagnosis? I
Hannah  4:12
had the basic symptoms standing up. My vision would go black. Oftentimes, I would lose my balance, end up on the ground. I did a tilt table test. Initially, it didn't show anything. However, I went back to a different cardiologist, and he said, Absolutely, you have pots, your heart rate and your blood pressure, all of that matches exactly along with pots. And he sent me to a different specialist who's actually a like specialist only in pots. So that was kind of how that all wrapped it up. But that's the formal diagnosis of that
Scott Benner  4:44
any other issues medically for you or in your extended family.
Hannah  4:50
So we have a genetic disorder called Ehlers Danlos. I'm not sure if you're familiar with it.
Scott Benner  4:56
That's an autoimmune issue where, like your your ligaments and all are. Super stretchy,
Hannah  5:00
yes, exactly and kind of matching. Along with that, I have Hashimotos hypothyroidism, and then I also have celiac, all the autoimmune things you have everything but type one, exactly. My son's endocrinologist was very surprised that there was no history of type one in our family, but there is not
Scott Benner  5:22
wait your son's endocrinologist didn't see your celiac Hashimotos and ears dandler as like an obvious connection to type one diabetes through autoimmune
Hannah  5:32
so I should clarify his first endocrinologist. No, they did not. We actually switched his endocrinologist to someone we now have to travel for. But that's okay, because they're really good, and they did kind of acknowledge that.
Scott Benner  5:45
How about on your or on I didn't You didn't say if you're married, but I assuming you're Yes, I am on your husband's side. Is there anything going on over there?
Hannah  5:55
Autoimmune? They don't have any autoimmune on his side that we know of. My husband doesn't even go see a doctor, he doesn't have a doctor. So he could have 15 different things, but we would never know.
Scott Benner  6:06
Is he similarly aged to you? Are you guys around the same age you are? Yes, How old's your oldest? Four, four. Okay, you get married pretty early.
Hannah  6:15
Yes, I did. Yeah. On We Got Married at 21
Scott Benner  6:19
wow, because you wanted to be married, or because you didn't want to have a baby when you weren't married,
Hannah  6:24
which one, honestly, it's a lot of formal paperwork if you have a baby not married. So that was a speeding along thing where, when we got pregnant, we did get married for the formality of the paperwork
Scott Benner  6:36
gotcha, but it's working out. Yeah? Awesome. I mean, you did it again, right? So, yeah, you're like, I guess we can do this on purpose the second time.
Hannah  6:45
Yeah, well, that's very different,
Scott Benner  6:50
not quite on purpose. Anna, I got, hey, listen, however it happens, you're in school for nursing. I think that's where we should pick it up. We're in nursing. You're in nursing school, and what are they teaching you when you start connecting the dots?
Hannah  7:04
So this was fairly early on in my journey through nursing school. It was really kind of the basic classes. But, you know, they teach us kind of the basic things, the 3p associated with type one, so the polydipsia. And I was just kind of like thinking about it. And we were talking about how, like, fatigue is a common symptom for early onset or new onset, as well as, like, the excessive thirst and sleeping while that goes the fatigue and then the peeing a lot. And I was like, Huh, that's really odd. That sounds exactly like my son, he had an appointment that next week, so with that, we took him to his pediatrician's office, and I said, Hey, I know these are some signs, and I'm seeing him doing this. Do you think? What's your thoughts? And he told us, he said, you know, these could be toddler things, just common things that toddlers do. I wouldn't worry about it. I bet a nickel. He said that everything will turn out just fine.
Scott Benner  8:08
To make him pay the nickel I should have,
Hannah  8:11
I keep meaning to go back and ask for my nickel.
Scott Benner  8:13
Also tell him in your in your vernacular, nickel is 500 that's how you were thinking of it. Yeah, exactly, exactly.
Hannah  8:22
I mean, I think he could fork it out. It'd be fine. I mean, he's a great doctor. I just think that it was something that was a little bit overlooked, but they did do a glucose check in the office, and it was 153 hours after eating. So while it wasn't like go to the ER, he's in DKA. It was kind of suspicious that something was going
Scott Benner  8:44
on. Okay, can we stop for half a second so we can fill people in on the three P's? So I have to admit, when you said that, I thought, I don't really know what that means. So I checked into it, and we're looking at polyuria, which means frequent urination, polydipsia, excessive thirst, polyphagia, increased hunger. And if you're looking for a little more etymology, the poly part comes from the Greek meaning many or much. So, much urination, much thirst, much eating. And I guess those are just words you learned in nursing school, right? Yes, exactly. Okay, okay, sorry, you can keep going. So I bet you a nickel that this is nothing. Yes, yeah, that is. How do you lose that nickel? What did you start like? Did you say this? Don't seem right to me? And you moved on to another doctor, or you went back to that one
Hannah  9:35
well, so this was the pediatrician, and we've seen him for a while. I think he's a great pediatrician. Honestly, in this circumstance, he with the blood sugar of 153 hours after eating, he kind of popped his head back in and he was like, I mean, it's not what I like to see, but it's not horrible, but definitely, like, needs some more tests. Okay, so he actually. Sent us for an A 1c and I think some other testing, honestly, but I forgot which ones. But I know he did an A 1c because about a couple of days later, I got a phone call saying, hey, his a 1c is 5.8 or, I think it was 5.3 at that time. So that's normal. You're totally fine. He doesn't have type one. I was like, oh, okay, well, that's really odd, because I just finger poked him, and he's at 242 that was kind of another sign where we were like, yeah, no, there's something going on here. So I actually took it upon myself to do some research and got a hold of someone at the ask program, and we did the antibody testing through the Ask program, where he came back positive for three out of five at that point. And then the confirmation testing was four out of five.
Scott Benner  10:50
I have to say, the 150 blood sugar, the three and a half hours after, like, that should have been enough. Like, I get that he's a good pediatrician all but like, I want other people listening to know, like, you know, that's That's enough. If your blood sugar is 153 hours after you've eaten, you probably have type one diabetes, you know, or you're on your way to it, so. But your child's blood sugars were variable, because the A 1c was holding pretty low. But you saw a two, you know, a two and 250 kind of blood sugar. When did you, I guess, is ask were they introduced you the idea of, like, different stages of type one?
Hannah  11:26
Yes, they were. I had done a little bit of research on my own. I like to understand, kind of all of the information behind things. So I had done some research and kind of had a little bit of an idea, but they kind of formally went through it all and told me what this means, and gave me, they sent us out a Dexcom, and we put that on him to determine kind of what stage he was in. And we were able to take all of that data to the endocrinologist that they connected us with, okay?
Scott Benner  11:53
And they explained to you that three antibodies is a it's a slam dunk, right? Yes, yeah. So then, how long ago was this?
Hannah  12:02
This was actually October of last year. So we're about one year out from when that
Scott Benner  12:07
happened. About a year out, is he in stage two? Still now questionable?
Hannah  12:13
Um, he spikes up with meals to like, 370s, 378, I believe, is the highest that we've seen his. So that's pretty high where it's kind of thinking like we might be like in between stages, but he is able to still bring it down on his own, okay, just very slowly
Scott Benner  12:33
away from meals. Is he stable at in the 80s, the 90s, hundreds. Where does the stability sit?
Hannah  12:40
Some days he sits like 140s 150s other days, he sits like 115, 125
Scott Benner  12:47
What's your inclination now? Do you think he should be using insulin?
Hannah  12:50
Well, one thing that I find really interesting is they say that stage two does not have symptoms, but we are seeing symptoms with him, so when he spikes up that high, and when, oftentimes, when he gets up that high, he's very cranky, he You can tell he doesn't feel good, yeah, we want to be able to have a little bit more control to prevent that. While I know it's not completely preventable, he's going to spike up. We want to be able to control it, rather than sit back and watch my child like have the symptoms and feel yucky and not be able to do anything. How long do those spikes last for? Typically, hour and a half. I'd say, Okay.
Scott Benner  13:32
And have you approached doctors with this? Your endo with us?
Hannah  13:36
Yes, we sent them a message, and they were kind of following up on that. The one thing that's pretty unique about him specifically is he has some malabsorption issues also, so that kind of presents another issue for him, where, when he, like, has these malabsorption issues, his sugar either normalizes or goes low. So that's impacting his a, 1c, and it's impacting his Dexcom time and range. So it kind of complicates things on if it's time or not. So
Scott Benner  14:06
when he eats food, is it absorbed slowly, too quickly? What's the malabsorption?
Hannah  14:13
They're actually not quite sure exactly what's going on with him. The thought is, like he's allergic to dairy, but not severely. He's not really symptomatic with it, other than like they did some stool studies, and they are able to see that he does have carbohydrates still in his stool. You're not supposed to, and he's he's tested positive for it, not carbohydrates, sugars in his stool. That's what it was.
Scott Benner  14:39
Is this a lifelong issue, or did this start around the time of the diabetes
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Hannah  16:55
I feel like it started around the time that we would start of we would have started to see symptoms of the diabetes. Okay, he also had some issues where he'd get super pale. We always thought it was really odd, but it was ghostly pale. And now looking back, I know that that was low blood sugars.
Scott Benner  17:13
Okay. Well, I'm asking about the absorption, because, you know, your pancreas does more than just make insulin, so it also helps with digestion. And I'm wondering if maybe, I mean, people talk all the time about like my kid was diagnosed now their stomach hurts all the time, really common. Some of them end up using a digestive enzyme with a meal to see if that helps. And I'm wondering if, if that's maybe not the connection there for him, or if that's not worth asking a doctor about. Yeah,
Hannah  17:41
I'll definitely bring it up on that next one, next appointment with his GI. Thank you for that. Yeah,
Scott Benner  17:47
no, you're welcome. People around here have used them off and on. I use them sometimes when, if I'm having like, a particularly, like, high protein, or if I eat fat, I don't eat a lot of fat or grease. So when I do sometimes I'll throw a I'll throw an enzyme in there with it. But, you know, we ended up finding out about them because Arden had, like, stomach pain constantly, and you know, she wasn't going to the bathroom on a regular schedule. And then we just hit her with some enzymes for a while, a little bit of magnesium oxide to make her go the other way. It actually kind of like found a stasis. It's a little more balanced now. She doesn't use those all the time, or hardly ever, honestly, and that ended up being it. But there's a great episode of the podcast just called, uh, I think it's called, owner of a useless pancreas that talks about everything that the pancreas does not just, you know, in some production,
good, good to know. I don't want his belly to hurt. You know what? I mean,
Hannah  18:38
yeah, it's, it's a lot, it's difficult. There's a lot to it, and with that like it, it just further complicates the whole picture of like, what's actually going on, because we don't even know if he's absorbing on a normal day to day basis, right? Completely, fully. So maybe his spikes, maybe he is in stage three, but the absorption issues are kind of presenting and making it seem like stage two. It's just really a confusing picture
Scott Benner  19:05
well, so let me ask you, because I have my opinion after you've explained it to me, but, but if I put you in charge, and you didn't have to talk to a doctor, what do you want to be doing? So
Hannah  19:14
we actually switched his endocrinologist for a couple of different reasons, but one of them was the new endocrinologist uses diluted insulin. My perfect picture, we would do some diluted insulin, because I feel like that could just kind of stabilize him a little more than what we're currently dealing with. How old is he again? Now he's two. He'll be three in January. Oh, he's little. How much does he weigh? Yes, I'm about 28 pounds. So I
Scott Benner  19:40
gotcha. Okay, it sounds like you're on your way to figuring out. But, I mean, I'm very compassionate to the idea that his, you know, his blood sugar is high and he doesn't feel well. That's, you know, a number of times a day. It's not, that's not fair to him. You know what? I mean, it sounds to me like I vote insulin. So I think you're, yeah, I think you're there. Do you think that'll be. Happening soon.
Hannah  20:01
I we follow up with the endocrinologist in about two weeks, actually, but the further complicating part of the story, and I know many people have dealt with the same thing, but his daycare will not give insulin. We're not quite sure how that's going to work out, which in that case, we're not quite sure if that's what we want to push towards. But at the end of the day, I want what's best for my kids.
Scott Benner  20:24
So, oh, that's cause a ruckus. Well, you're, they're gonna have to do that or find another place. Because, I mean, you know, as much as, as much as it would be great if you know my daycare won't give insulin so you don't have diabetes, would be a nice way, a nice way to ignore it. Yeah, it's not gonna, not gonna be the case. And 350 blood sugars. I mean, are, I think that's too much in a situation where you have the ability to get the insulin, but your bigger problem is now, what did they say? They said they just won't do it. Perhaps the best gift that you can give to yourself or to a loved one is that of comfort. And this holiday season, if you use the offer code Juicebox at checkout at cozy earth.com you won't just be getting something that's comfortable. You'll also be doing it at quite a discount. We can talk about that in just a moment. Right now, I want to tell you that I use cozy Earth towels every day when I get out of the shower. I sleep on cozy Earth sheets. Every night when I get into bed, I'm recording right now in a pair of cozy Earth sweat pants. I love their joggers, their hoodies, their shirts, my wife has their pajamas. And I know you're thinking, oh yeah, Scott. Well, because they sent you a bunch of it for free, they did send me some for free, but I've also bought a lot on my own. So like I said earlier, Black Friday has come early at cozy Earth, and right now you can stack my code Juicebox on top of their site wide sale giving you up to 40% off in savings. These deals are definitely not going to last. Get your shopping done now or get yourself something terrific at cozy earth.com Do not forget to use that offer code Juicebox at checkout, you will not be sorry. Funny
Hannah  22:03
enough, I spoke to the director of the daycare again. We love them. It's just been this little hiccup. They said that they are not allowed to, and she said she checked with her licensing person, and the licensing person said, No, which, I know that they need to, and that they are required to. It's just one of those things that I'm not going to make that fuss. And the endocrinologist office said that they have someone who could potentially call and kind of explain those things to her.
Scott Benner  22:33
Okay, well, yeah, but they're scared. Is it a big company, or is it just like, you know, a nice lady who watches five kids. Or what's the setup?
Hannah  22:42
It's a fairly large place. They have, I would say probably 100 kids. Oh, roughly so it's kind of in between. It's only one location, so not a company, per se, but one in which she has kind of a well established daycare. I'd say,
Scott Benner  22:59
Okay, do you think you'll go to a pump When insulin starts? Or do you think you're going to go? MDI,
Hannah  23:05
my hopes is that we do a pump. So for me, I would, I would vote do that at the very get go. I know that's likely not going to happen. However, I think we're also in a little bit of a unique situation, because we were provided insulin when he was first diagnosed as Stage Two for corrections, so we've used it maybe 10 times over this past year, maybe a little more, but we're familiar with it, so it's not a foreign idea. Yeah, to do an injections, but I think we would benefit from a pump.
Scott Benner  23:37
Do you think you'd use some sort of an automated system. So the
Hannah  23:41
endocrinologist, when she brought it up, she said, likely an Omnipod with point 05 kind of as a basal.
Scott Benner  23:49
And then would that be Omnipod five? Though? Would it be automated? You know,
Hannah  23:53
I'm not quite sure. She didn't go into depth on that, but that's going to be something I'll ask.
Scott Benner  23:57
Yeah, no, it's interesting to talk to you, because you're, you're into this a year, but you're not really into it at all. You're an interesting mix of like your experiences and your knowledge about it and everything like that. I'm wondering, because if you put you, if you put him in daycare, and his blood sugar starts to drift up a little bit, an automated system is going to try to stop it, and then that would take away from them needing to give him insulin, maybe in some situations, and also, like, you know, for their concern, like you're really just asking them to push a button. And, I mean, I'm assuming you'd send carb counts with him and and help them get through all of it. It's, I do think you'll be able to work it out, but sometimes they get, I don't know, resistant, and they just fight, you know what I mean. So I'm wondering, I guess I'll never, I might never know, but I'm wondering what you're gonna what you're gonna run into, yeah,
Hannah  24:44
we're curious on that as well. We have a great relationship with them, so I think it's definitely something that we could approach that conversation and have that conversation with them, yeah, along with kind of the support of the endocrinology office. But I mean, like you said, I'd be more. Than happy to go in train them and kind of walk through that. I actually go in there a couple of days every now and then to help out and work there. So like I said, we have a great relationship. I would totally do that if they're open to it, but I think we would benefit more so from a pump for that specific circumstance as well,
Scott Benner  25:17
though, I think you'll make your way through this. I think it's probably just a feel through process. And I'm wondering too, as you're talking, I don't mean this in any certain way, but like, you're pretty young too. You know what I mean? Like, you're young. I mean your husband's younger. It's a it's a unique situation. I wonder how 36 year old you will take would have dealt with this, I guess is what I'm getting at. Like, I don't know if you're being too referential or not with people, like with a doctor, too, by the way, like I am wondering that as I'm talking to you,
Hannah  25:45
I tend to be a people pleaser. Yeah, I'm hearing that. So that would 100% match my personality, and it's something that I've had to kind of learn to balance that with advocating for my kids. Yeah, because I've, I've had to advocate really hard. Now I
Scott Benner  26:03
imagine you have any educators in your in your family, your mom or anybody, a teacher?
Hannah  26:07
No, I don't think there are any. I was trying to scroll through my family tree here, and I don't think so. Actually,
Scott Benner  26:14
I was gonna layer a couple things together, but I figured with you being in nursing school, it's your, I would imagine right now, especially it's your your leaning to to give deference to the doctors. And I mean, it would be weird for you to be in nursing school and feel like, No, I probably know better than them, so you know, like, there's that. And I was wondering if you're not pushing back at the daycare center, because maybe you knew somebody who was in education too, but that's just me fishing. I was fishing pretty hard there, but I do feel like I hear that from you a little bit, that you're being you maybe haven't found your full voice in this yet. Am I on to something there?
Hannah  26:50
Yes, and I would totally agree we actually, we've only had one appointment with the new endocrinologist, but I feel like they are definitely more supportive in that sense. His a 1c spiked up to six a couple of months ago when we were with the previous endocrinologist, and he was pretty symptomatic. He was having some pretty sustained ties, and I brought it up, and we saw a nurse practitioner at that appointment, and she was great, totally listened to me, but I think she had to get things approved by the physician, so she brought it to him, and he said no. So that's kind of where I felt that we were lacking that support, and ended up switching him. Yeah, so I'm hoping that this upcoming appointment will will get us somewhere.
Scott Benner  27:34
Do you look young, too? Hannah, yes, this is all important, right? Probably all leans into how this works. Yes, yeah, because you come in, you say something, and she's like, Oh, I'll go ask the doctor. I said, No, that's okay. We don't, we don't need to listen to Hannah. She's 12, and I know when I'm doing the thing. I like how you moved on so quickly, when somebody showed that they weren't going to be, you know, a partner in this with you. Yeah, when it comes
Hannah  27:57
to my kids, I will, I'll be tough, you know, I'll kind of make those decisions, but I may prolong them a little more than they need to be, but I'm still learning on that aspect of things. I'd say that this decision to move the endocrinologist was a really great one.
Scott Benner  28:13
Yeah, that's a big move for you too. I sincerely, it's just so interesting because at your age again, like, I imagine, you know, a year or so ago, like, if you had questions about things, you probably would go back to your parents still once in a while, but like, now that this is a thing they have no experience with. Do you find yourself wishing that you could go talk to your mom and dad or something and then realize they're not going to be valuable on this one?
Hannah  28:39
Yeah, and sometimes I voice things to my mom, and she is a very devil's advocate type person, but she has offered a lot of support in this journey and kind of learned things along the way as well. My step dad's a type two, I believe, but he's not very well controlled. That's okay. That's for another day. We work with him with that, like she has some basic knowledge, and she's really put in a lot of time to learn a lot of different things with it. Okay, it's a little odd in the sense that, like, I can't go to her because she's experienced this exact scenario.
Scott Benner  29:12
Yeah, yeah. That's what I was thinking. Like, if you had a money question, or like, hey, how do you run a thing or pay for this, or how do I get my driver's license renewed? Or she'd be valuable in all that those places. And then it comes to this, and you probably need your mom in this moment. And then she doesn't have any experience, but she is willing to learn. So that's awesome.
She's great. Did you have to ask her to get more involved? Or did she just
Hannah  29:37
launch into it? Oh, she just launched into it. She is the like, absolute best Nanna that my kids could have. She was there when I got the phone call that his antibodies were positive. So really, from the very beginning, she has been fully supportive and looking into it on her own and sending me like carb counts for Halloween treats and. If we end up going that route. So good for her. She's been great.
Scott Benner  30:03
That's very nice. You're lucky. Talk about, if you can a little bit about, I guess, the the pivot here, because you're young family, you're rolling along, things are okay. And then this comes up, I imagine this, this slow onset presents its own problems, right? There's probably a lot of, I'm guessing, psychological burden here. And I was wondering if you could explain a little bit what it's like to watch this happen in slow motion.
Hannah  30:29
It's really difficult. Honestly, I have found that finding other people kind of in the same situation is definitely helpful. But I did see someone the other day who said stage three is harder. And while I understand and I completely agree that there's definitely difficulties with stage three, I think stage two is really difficult in its own way. Because you know, you do truly sit back and watch your child just be miserable and like, yeah, you can hand over a pack of Smarties when they're low, but when they're high, you just kind of sit back and you're like, let's just watch the numbers and just kind of wait until that shoe drops, because one day we know it will, so we don't know, like, this stomach bug going around daycare, is that going to take them out? Is that going to be what's causing it, or what causes that shoe to drop for him, and really kind of just sitting back knowing that our lives will eventually kind of change pretty drastically with his diagnoses, but at the end of the day, it kind of has also allowed for us to get a little more time to educate ourselves and educate others and kind of learn like how we're going to do things, because there's a lot of decisions to be made, whether it be like, are we going to cut back on carbs? Are we going to, like, let him have daycare treats, or are we going to provide something special? So just kind of scenarios like that, we've we have had some extra time, which has been very valuable. And I definitely understand that it's like, not what everybody else gets. And this may come out kind of negatively, but I mean it in the best way possible. It also feels like we don't belong as diabetics or as a diet part of diabetes. So it's really tough sometimes, because I even had to ask his doctor, like, okay, like, what? What do you call him? Like, do I call him a type one diabetic? Like, it's just so unknown that it kind of takes away, like, a little bit of that, like, do we belong in that community?
Scott Benner  32:32
Is that something you're worried about, or something you're actually feeling from
Hannah  32:35
people? You know, I don't really know kind of where it stems from. I would say, with it like I if I say my son's a type one diabetic, and they go into talking about, oh, what's his pump settings? Oh, well, you know, he's kind of in between, and not really on pump all the time, or not on a pump, because he's not on insulin all the time. So it's kind of rare in that circumstance.
Scott Benner  33:01
Okay, okay. And how about online? Do people mind online? Because that's where you're learning about things. So you talked about finding people who have a similar situation, I just assumed. But is that what you're doing? Yeah, I
Hannah  33:12
was part of a bunch of the like type one Facebook groups, and that's been a great community. Honestly, I haven't received any negative feedback or any pushback from anybody. I actually personally created a like Stage Two Diabetes type one diabetic group, because I know that this is a little bit of a unique scenario for some so kind of offered for more of a support system for that specific circumstance.
Scott Benner  33:39
How many people were you able to get into that group with first stage?
Hannah  33:43
So let me check right now. I think it was. There's 90 members. Now, that's
Scott Benner  33:49
crazy. That's awesome. Yeah, and yeah, small group of people who all have a very specific experience. It is incredibly specific experience, obviously. Are you finding are they hanging on after their kids move to the next stage, or do you lose them out of the group?
Hannah  34:04
So at this point, I think only one has moved on. Oh, I take that back. I think there's two that have moved on now, but they're both still in the group, and they've been in great support. You know, it's, it's kind of weird too, because it's like, I don't know exactly what this is going to look like. Like one day, is he going to wake up and go up to 300 and never come down? Or is it going to be a slow progression where he'll just, he'll go up, he'll stay there for a couple of hours, he'll come down, and then the next day he'll go up, stay a little longer, come down. So it's been kind of interesting to see their perspective on that, because they have kind of seen that
Scott Benner  34:40
progression? Yeah, is it happening more one way than the other from what you're seeing in the group, like quick onset versus slower?
Hannah  34:47
I believe the one was kind of had a sickness and then spiked up never came down. Okay? The other, I think spiked with meals will come down, but they are doing. Insulin at mealtimes. Gotcha? Yeah?
Scott Benner  35:01
It's just a couple. Okay. Did you is my group valuable for you? Have you been in it? Absolutely. Oh, it is. I have been
Hannah  35:09
in it, and I think it's definitely valuable. There's a couple of stage, two people in there as
Scott Benner  35:12
well. Oh, no, kidding, that's awesome. I guess she's just you reading ahead, really, right? Is that how it feels?
Hannah  35:18
Yes, yeah. And I think that's a part of the like, education portion of it. Like, we've, we've had that time to kind of look into it and see what people are doing and really kind of understand a little more.
Scott Benner  35:29
I'm super interested to learn if this process of, like, the slow, you know, the slow onset, kind of a feeling, and you being able to read ahead and get more information if it's going to be valuable for you, if you know, two years from now, you'll look back on it and say, you know, those first couple years were really made much easier by being pre educated and knowing what to look for and how to react and what to expect.
Hannah  35:54
Yeah, I feel like it will, but I'll report back. Yeah,
Scott Benner  35:57
thank you. Everything's so unknown for you at the moment, right? Yes, yeah, it is. Is that difficult, just like, personally or, I mean, how are you dealing with it with your husband? I mean, I was 26 and just married recently. Like, it's, it wasn't exactly the highlight of my ability to be emotionally intelligent, and think so. Like, is this been hard for you guys? It's been
Hannah  36:19
a little different in the sense that, at first he kind of was like, Well, you don't know that he has type one diabetes, kind of in between that waiting period of getting the antibody results back, okay, but once we got those back, I think he kind of accepted that this is reality, and we're gonna have to just learn and figure it out from here on out. And he's done great with kind of picking up on things, and like I mentioned earlier, He's not one to go to a doctor himself. He passes out when his blood's taken, but he has given insulin when we need it for a correction. So he's done really great in kind of supporting and it's actually, it's gone quite well for us, awesome.
Scott Benner  36:55
I see there's not a lot of arguing or worry. Hasn't ramped up like tension or anything like that.
Hannah  37:01
No, I think the only aspect of it that has kind of like presented any sort of little issue would be kind of the financial aspect of type one. And, you know, we do get a Dexcom, and we do need to buy, like, the ketone strips and all of those type of things. So that's kind of presented a little tiny bit, but
Scott Benner  37:20
not much at all. Yeah, well, you're in school, right? Do you work as well? I
Hannah  37:25
do, but it's very minimal. He does most of the working I school is quite tough. It's full time, so it's three days a week of a lot of hours. I'm not
Scott Benner  37:35
trying to say I think you should have a job at the same time that you're going to school. I'm just wondering if you do or not. And I take your point so your your expenses went off, but your income didn't change. Yes, exactly. And did you have? Do you have the kind of insurance through his work where you're like, I can't believe how lucky we are. Are you more like, oh geez, I wish this insurance was better.
Hannah  37:55
I think that we have it pretty good. The only pushback is they don't always approve things, and they love their prior authorizations. So that's kind of the only thing that's like a little annoying on that side of things. But I think that's just insurance in general. Yeah, he does. He has an HSA account as well. So that's kind of helped out with those type of things.
Scott Benner  38:15
No, they're really helpful. Well, you have diabetes, though, in the in your life, sometimes those things burn out pretty quickly as the years go on. Going, how much should we put into this HSA account? And just like, well, how much could we afford to because we should probably put in all that we can afford to. It gets used up pretty quickly. It's not for the faint of heart, that's for sure. Yeah. How much longer do you have in school?
Hannah  38:35
Nine months. Oh, okay, I will very proudly say that you're excited
Scott Benner  38:39
to get done, huh? Yes. What happens when you're done? Do they help you place at a hospital? Or what's the process of looking for for work after
Hannah  38:47
that? So I kind of took on a unique position with my job right now, the hours that I work, I work 24 hours a month is my required hours. So that's 212 hour shifts, and that's on the unit that I like, I had to interview to be placed on that unit they selected for me to be there, but I with that will almost get a guaranteed spot, not as guaranteed, but I still have to work for it. Still have to earn it, but it definitely helps get my foot in the door.
Scott Benner  39:18
And how will that change your financial situation significantly? Oh, 100% okay, you think you have more kids? We
Hannah  39:27
do want more. Okay, that is something
Scott Benner  39:29
that you got some energy left over you'd like to use up
Hannah  39:33
as of now. We'll reevaluate in a year.
Scott Benner  39:36
Yeah, I was gonna say, How long do you think you would wait until you did it again. Like, would you want to would you want to see what diabetes life was like first? Would you like? What is it you're waiting to see? So
Hannah  39:48
one perspective that I've kind of really wanted to take with this, and I understand that it's it's difficult. I don't want diabetes to affect our life. Obviously it's going to affect our life. But I. Don't want it to, like, change any decisions that we would have made prior. So with that, like, we aren't gonna hold back carbs for him, some people might disagree, but I want him to kind of live a normal life as close as possible. We would still kind of have a kid regardless of what diabetes looks like for us at that point.
Scott Benner  40:17
Okay, why are you so what's the
word I'm looking for? Responsible. Why are you so mature? Did you get kicked out in the world early? Did something happen? Is your husband in the same situation? You know what I'm talking about,
Hannah  40:33
or no, yes, I do. I had to be my own lawyer at the age of 21 so I would say that that's a that's a good portion of it.
Scott Benner  40:44
Whoa, okay, can I? Can I ask why?
Hannah  40:48
Yeah, we were so with the earlier Stan lows, easy bruising is a very common symptom of that. And with our firstborn child, he had a bruise at one month old. They called CPS on us, and CPS took him from us, come to find out, he has earlier Stan lows, and he actually has a suspected bleeding disorder as well. So he will bruise easily, and he does still continue to bruise easily, but that was 14 months of court dates and kind of all of these different things that we had to go through and jump through all of these hoops to get our child back. So that definitely matured me. Hannah,
Scott Benner  41:24
I've been talking to you for 42 minutes. What crack head took your baby from you. How did you are? So obviously a decent person, like, yeah, they thought you hit that kid.
Hannah  41:35
They they did. And it was an absolutely horrific time. Yeah, it was, it was a lot of jaded systems that we saw at that point, I bet.
Scott Benner  41:48
And how long did it take you to get through all that,
Hannah  41:50
14 months from start to when he got to come home? And that was delayed because it was during covid. So court was on Zoom, but it was definitely
Scott Benner  42:00
cry. They had your baby for 14 months. Yes, holy, oh my god, I really like got flush with emotions when you said 14 months. How was the baby when they took it one month? Oh, my God, had you done anything illegal, immoral or otherwise questionable prior to that? No.
Hannah  42:19
And you know, we did hire an attorney, and he said that, had we done something, we would have gotten him back sooner, because we would have been able to, like, go through a rehab program, or go through some sort of program to show that we've put in the work. But because we maintained our innocence the entire time, we had to kind of go through a very long
Scott Benner  42:43
process. Can I ask what backwater state you live in? Please, Kentucky. Okay, all right. That's all I was wondering. What in everyone? Move immediately. Okay, just get out. Go somewhere else. I hear there's some desert available. Go West.
What in Jesus did you cry? I don't understand, like, how old were you when that happened? 21 Did you cry every day, all day long?
Hannah  43:08
So that was also a interesting aspect of it. Yes, we did cry a lot, but at the same time, we could not cry in front of certain people. Otherwise we would be looked at as though we were mentally unfit for our child, so we had to kind of remain as normal as possible.
Scott Benner  43:28
But wait, who was eyeballing you that you couldn't be emotional
Hannah  43:33
in front of the caseworker on our case was not the greatest. No, really. Go ahead and she was
Scott Benner  43:41
and she was on you all the time, watching you all the time. It took her 14 months to figure out you didn't and how did you, My God, how did you even figure out the the avenue to use the NOT use, but to bring up the disorder that caused the bruising? How did that like? How did you even put those puzzle pieces together?
Hannah  44:00
That's a lot of where I do a lot of my research. I was trying to figure out anything because obviously I knew we didn't do it, so something had to be wrong with my child to have caused a bruise. So did a lot of educating myself on things, and lot of looking stuff up. And that's when I kind of came across earlier stanless. And I was like, Oh my gosh, that fits everything that I've experienced. So I got diagnosed. My mom was diagnosed, my sister was diagnosed, and then he was assumed to have the diagnoses. And then as far as the bleeding disorder, it was something that we saw hematologist because I went back to the pediatrician and I said we didn't do anything. Something is wrong with my kid, and I need help. Yeah, and so he referred him to a hematologist, and the hematologist did a bunch of studies, and there were some abnormalities with it. He doesn't have an exact diagnosis just yet, but it's enough to say, like there's something with this kid that his bleeding is more. Than it should
Scott Benner  45:01
be. Hannah, I'm going to be unpleasant. You don't have to agree with me, but what nosy piece of went to the authorities about your baby? For you, they that person still in your life. Is there a way to forgive that person?
Hannah  45:11
So it was a doctor within the same pediatrician group that we still use, but we will never see that doctor again, and she just immediately, I had it, I had a question, a list of questions, in my notes app, and I went in, and he was undressed, and I asked her, What? What is this? And she said, that's a bruise. Would you do? And I mean, from there, it was just kind of snowball effect. And we were at the ER with him, because she sent us there, and she called CPS on as we were on the way, and they met us there
Scott Benner  45:43
as if you would hit the baby and then show it to the doctor.
Hannah  45:47
Yep, yeah. That was a question that everybody was like, how does this make
Scott Benner  45:51
sense? Gap of common sense there. How about that? What do you How are you 14? Is the baby in in in foster care for 14
Hannah  46:01
months. Thankfully, he was with my mom. Oh,
Speaker 2  46:04
okay, okay, go. Thank God. Yeah, we at least had
Hannah  46:07
that side of things that was very good. We had visitation that we could go see him at my mom's house.
Scott Benner  46:13
Oh, I thought not that this makes it any better, but I'm just thinking about your baby's off with some rando now for 14 months. But no, okay, thank God, Jesus. But, I mean, they
Hannah  46:25
did tell us. They said, You have 10 minutes to find someone who's going to take him, or else he goes to foster care.
Scott Benner  46:30
Jesus, can you imagine what just I mean, there's great people in the foster care system, but there's also not great people. No, I've heard both stories, by the way. I've heard I've had people go through foster care and they meet the most lovely people. And I've had people go through foster care and that's where they pretty much learned all of their problems in life. So, but that's not even what I was like initially thought of. I was thinking about like the baby just blindly being not in your sight or in your ability to know that they're safe,
Hannah  46:59
like that's really slept a lot of bonding issues with him.
Scott Benner  47:03
Yeah, I would imagine that any of the people who made this mistake, is there any penalty for them for being bad at their job and taking your baby from you? Or no, nope, not even a sorry. That's just over now, huh? Yes, awesome, which is a wild
Hannah  47:20
thing to me, although I have connected with our our attorney, I've seen him out and about a couple of times, and I do know that they talk about our case, so at least I know that they reflect on it and recognize that it went wrong.
Scott Benner  47:33
Think you might help other people like through what they saw go wrong 14 months. What were they? What took 14 months?
Hannah  47:40
Took six months for the actual report to come out, and then it took another, I believe, three months of gathering what they said was their evidence. And then we were supposed to go to court in the fall time, but they had, like a change of county attorneys, so then it got postponed, and there was some delay there. Then it was like getting everybody's witnesses, the schedules in time and all of that.
Scott Benner  48:10
So once you're in the system, you're at the mercy of the machine and how slow it moves, gotcha. And you call somebody say, Hey, you got my baby. And they go, we're getting to it.
Hannah  48:21
Funny enough, we had our own witness, and that witness was a little busy, so we had to delay about a month or two because of their schedule, which we knew it would benefit us to have him. So we allowed for that, but our attorney didn't put in the paperwork on time, so he wasn't actually even allowed on the actual like, the court date that was important. So, so you
Scott Benner  48:43
waited, and then you couldn't use them anyway, yep, and I had to speak
Hannah  48:47
on our defense for an hour and be berated and cross examined and all of the things lovely.
Scott Benner  48:56
Why are you not an like? That's that. Why? Why? I don't understand because you you listen, you're either really great at presenting yourself, or you're like a very kind person. I'm leaning towards believing you're just a kind hearted person. Why has this not damaged that about you?
Hannah  49:13
Truthfully, I don't know. I definitely suffer some consequences. I'm in therapy myself, but I think at the same time, like I see the joys that I have in my life now, when I didn't have them, I'm enjoying that now that I know that it can change in one day.
Scott Benner  49:31
Yeah, well, right now you have that perspective of like, it's easy to say, like, I might step out in the road and get hit by a bus. Once you experience something that actually comes out of nowhere, it means more to you now, my goodness, oh, you're really you guys are something good for you, like being so strong. Seriously, the boy you let marry you, he got through it as well. Or did he have his own struggles with it?
Hannah  49:56
He had his own struggles in the sense of like he. He felt that he had to, like, support me and be there for me, because I was pretty emotional, like while at home without, like, outside of our visitation times and all of that. So he felt he had to support me. And I truthfully feel like he could have taken a little more time to be emotional himself rather than supporting me, but that's what he did, and I appreciate him for it, but I also see that he needed to kind of reflect on his own emotions at that time as well.
Scott Benner  50:28
Yeah, we tend to do that. I think the world tells men, generally speaking, Don't be emotional, right? Take action, you know, be stoic, that kind of stuff. I don't know that it. I don't I don't know that the world's telling men, go, why don't you cry for a while? And then, you know, that kind of gets built up in you as anger, and there's no real where to put it. And then, you know, you could also make an argument that there are times when society tells men not to be men. So like, you know, when you're, yeah, you get all that anger built up. There's certain ways we get it out now, and now somebody's telling us those are wrong. So it's a, it can be difficult to unburden yourself and not hold all that in really tough for everybody, honestly, obviously, but, you know, it's why I was, I was wondering about him, because he's young and, you know, it's a that's, that's a hell of a thing also, is there any moment where he looks at you and thinks maybe she hurt the baby, or you look at him and think, God, maybe he hurt the baby. And I don't know, did you find distrust in each other during that?
Hannah  51:29
No, we never had a moment like that. And I know that there's been some circumstances where people have but we've really kind of been great at supporting each other through everything. And it's kind of continued even, like with our son and the stage two, like supporting me and my decisions. And if he if I speak up to a doctor and ask for something, he's going to back me up completely, because he trusts me. He trusts that I do the right things and know the right things. So we've been great in that aspect.
Scott Benner  51:58
Awesome. Do you have a body cam on whenever you go in public now,
Hannah  52:03
yeah, it's, it's really interesting kind of approaching that. Now, we literally were like, do we, do we need to have like, cameras everywhere, just for our sake? And, yeah, I mean, look
Scott Benner  52:13
what's happening. I'm not saying that the doctor that did this wasn't trying to be, like, protective of the baby. I'm sure she was like, but her misunderstanding, or jumping to a conclusion, or whatever, you know, like, whatever she did that got you in that position. How do you not worry that everybody that you intersect who has some sort of power over you, like that, if they want to exert it, could possibly decide to you up if they wanted to, and then just do it, or even if they, you know, wanted to, not wanted to, but just through bad decisions. Like, I don't know, I think, I think everyone I spoke to, I just be like, one of those people gets pulled over, and I'm like, officer, I just want to let you know I'm filming you. I don't know how you don't walk into every place going. I'm filming. I'm filming. Boy, that sucks. Man, I'm so sorry. Yeah,
Hannah  52:57
it's, it's been a lot, and I think kind of like approaching that subject. And I don't know if you're familiar with the like, taking care of Maya case, but that was a really big one that was more so about, like, oh, there's a word for it, and it can't, I can't think of it, but the mom was accused of, like, making medical decisions and medically kind of bringing things up for her child, rather than it actually happening. There's a word for
Scott Benner  53:22
that 1000s by proxy. Yes, yes, exactly. A great name for something, by the way.
Hannah  53:29
I'm fearful of that in the sense that now I understand like we're in a unique scenario where my child, he needs some help with his blood sugars, but I'm it does kind of take away of my ability to advocate for those sort of things, because I am fearful of that.
Scott Benner  53:43
Yeah, you don't want to put yourself out too much, right? Because you think maybe then somebody will misread it, or do, boy, that's crazy. I would never go anywhere alone. Like anymore, like this would make me crazy. Yeah, I don't want it to make you fine. Yeah, don't let it make you crazy. Okay, I'm just saying it would make me crazy, but I'm a little more reactionary than you are. Obviously. I think that's good for you and me. I mean, my goodness, like it reinforces every concern you have about society in the world in maybe the most impactful way I can imagine. Like they took your baby. They were like, No, you can't have your baby. How old? Tell me again, how old when they
Hannah  54:20
took he was one month old. I was 26
Scott Benner  54:22
one month old. They did. They were like, Hey, you can't have your baby anymore. You were 21 Yeah. Also, by the way, yeah, able to drink for the last three days and like, that young Yeah. And then they just, and you and we talked around a little bit, but you didn't get pregnant on purpose, right? You guys were dating, serious, got pregnant, got married, like, that whole thing, right? He was on purpose. Oh, he wasn't look at you.
Hannah  54:46
Yes, that one was,
Scott Benner  54:50
we did. The first one on purpose. The second one not on purpose. Oh, wow. But I'm just saying, like, you're that young, and like, all that's going on. And, my gosh, you know? Know, you I don't people have to do a better job. Like, you know, isn't it funny? Like, on the podcast, a lot we end up talking about people not doing a great job. And it's around, like, understanding, you know, that fat needs insulin sometimes, or that you have to pre bullish or something like that. But there are other people out in the world making other decisions that are consequential too. It would be nice if everybody was, I guess just trying a little harder might be nice. Anyway, no one's ever like they're not going to apologize because then it's an admission of guilt, right? Yeah, that's why no one's going to apologize to you.
Hannah  55:37
That's a big part of it, too for us, kind of looking back on it. Like I understand why she did it. I understand she has a duty to report. Do I think she jumped to conclusions before asking questions? Absolutely, but it's kind of also allowed for me to have the perspective of, okay, I can do better. So with me in nursing school, like I really want, one of the goals that I set out for myself is to be a nurse practitioner. I'd love to be in a pediatric office, and one of the things I would do is annual or for like, regular checkups, to be able to test blood sugar, because I think that's a really big thing that people should be doing and that should be done. Yeah, but that's something that I said that I would do differently. And there's a lot of things that I would do differently, and with me being in healthcare, I wouldn't, I wouldn't give that judgment.
Scott Benner  56:23
Yeah, well, attitude, but maybe don't listen to tomorrow's episode. It's gonna be called Lila's story, and it's a dad coming on, talking about how his young daughter was not diagnosed in time, and she she passed away from undiagnosed type one diabetes. But he's out there advocating for in the UK, for this kind of testing, simple testing, to be done. But yeah, to your other point, I guess it's a dual thing for me. First of all, everyone listening, and me included, take a page here from Hannah, like, like, she's, you know, she's had something bad happen, and she's putting her best foot forward and trying to make changes with it. But I like you being in the healthcare system with this experience, though, because I do think you will probably make different decisions than you would have had this not happen, and maybe that'll spread throughout your co workers and the institution you end up working at, it might have, like, some real benefits long term. So I hope you get out there and try to make those changes. I absolutely
Hannah  57:19
agree. We asked ourselves why this was happening to us the entire time, and I think now it's kind of coming full picture, and I'm seeing the why.
Scott Benner  57:28
Very nice. Okay, well, how did you have anything that we missed, anything we didn't talk about? How did I pick this out of you weren't going to tell me about this?
Hannah  57:34
Were you? No, it's something I tend to not mention and things, but that's okay. I think it's valuable for people to hear about as
Scott Benner  57:44
well, what led you to wanting to be on the podcast, just trying to share the story.
Hannah  57:48
You know, I think we have a very unique perspective being in stage two of type one. It'll offer kind of an option for people who are in stage two to kind of hear another story that's similar to theirs and just kind of share some likeness for them, yeah,
Scott Benner  58:04
okay, well, you did a really good job of not saying anything that would get you in trouble. But if you tell me right now you want me to take your name out of this or something, I can make it anonymous, but I don't think you said anything that puts you in jeopardy. I am the only one that said stuff like this, and we'll say again, like, oh my god, Kentucky. Like, do better that was just poorly. Do you think they just see so much bad stuff, it just all looks like it's bad after a while?
Hannah  58:27
Yeah, I would say so. And I think that that's part of kind of the medical system as a whole. They make kind of decisions based on what they've seen in the past. So yeah, I think that's another portion as to why my son's symptoms were like, oh, it's probably just the toddler thing. Well, isn't
Scott Benner  58:46
it funny, though, with the diabetes, it was odd, it's probably nothing, and with the bruise, it was either probably trying to kill that kid. Yeah, like every, everyone's all or nothing all the time. You ever noticed that about people? Like, there's no middle ever, just 100 miles an hour or absolute inertia, they're just like, whatever exactly. I swear to God, you are awesome. I can't thank you enough. Like, I just thought, I don't mean to, like, I'm not minimizing it, but I was like, Oh, I'm gonna have a conversation this afternoon. Somebody's kid is in stage two, type two, and, you know, blah, blah, blah. And it's really turned into a great conversation,
Hannah  59:22
so I appreciate it. Yeah, absolutely thank you for having me on. That's
Scott Benner  59:26
a pleasure. Hold on one second for me. Okay, okay.
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