Scott Benner 8/3/23 Scott Benner 8/3/23

#968 Diabetes Myths: Altered Mind Lie

A brand new series examining the myths surrounding diabetes.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.

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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 to episode 968 of the Juicebox Podcast.

Today on the show Jenny is back and joining me for another diabetes myth episode. Today Jenny and I are going to talk about the altered mind and whether or not it's a lie. While you're listening, please, please, please, please, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. If you're enjoying the diabetes myth series, you may have missed some go back in that podcast player and take a look. If you're not listening in a podcast player Oh, get one apple podcast Spotify or something like that they're free and way easier to listen to a podcast with speaking of different series within the podcast, there's ask Scott and Jenny afterdark algorithm pumping bold beginnings defining diabetes defining thyroid diabetes, pro tip, diabetes variables mental wellness type two diabetes pro tip, how to eat and much more juicebox podcast.com Look up in the menu. You'll find them all. I drink ag one every morning and you could to use my link to get started and you'll get a free year supply of vitamin D and five free travel packs with your first order. Drink ag one.com forward slash juice box. I'm going to tell you about one of the better decisions I made last year I switched Arden's delivery of her diabetes supplies from where we were getting them to us Med and US med is more than edging out the service that we were getting from that previous company. right from the comfort of your home or office, you can join over 1 million satisfied customers who rely on us med for courteous, knowledgeable and trained customer care and their representatives are going to keep you up to date with your medical and diabetic supplies. All delivered right to your door. Us med.com forward slash juice box or call 888-721-1514 To get your free benefits check right now. US med features a litany of things that you're going to love. How about an A plus rating with the Better Business Bureau. They accept Medicare nationwide and over 800 private insurers. They carry everything from insulin pumps and diabetes testing supplies to the latest CGM like the FreeStyle Libre three, the Dexcom G six and a little bird told me the Dexcom G seven coming very soon. They always provide you with 90 days worth of supplies, and fast and free shipping. better service and better care is what you're going to get when you go to us med.com forward slash juice box. On top of all of this US med is now dispensing Novolog insulin aspart and human log insulin lispro through their pharmacy benefits. What are you waiting for us med.com forward slash juice box 888721151 For us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash. They are the place we got our hands on the pod fives from us med provides Arden with her Dexcom supplies, and are the number one fastest growing tanam distributor nationwide. I mean, I guess I could say it again. But are you just already online getting it done? Are you even listening to me anymore? Where have you already called 888-721-1514? Don't like the phone? Us? med.com forward slash juicebox. The other day I got an email from us Med and it said are you You want some more supplies? I guess it was time? And I said yes. Click the button and then they just showed up. You want to do it like that. It's pretty damn easy. Us mint.com forward slash juicebox. Jennifer, we are back to tackle another diabetes myth. You must be incredibly impressed that I've learned to say myth. And I know I am I still have to think about it while I'm saying it. But still it's

Jennifer Smith, CDE 4:09
funny. I didn't think that you said it wrong or weird to begin with. I know you think that you did. But I think it's the way that the brain plays tricks. My kids have actually just been doing this with words. They'll say a word and they keep saying it like the other day it was Spoon. Spoon spoon. I'm like say it in your head. I don't want to hear a spoon anymore. But it was that they just kept saying it and then it became really weird. They heard themselves say it is it doesn't sound like spoon anymore in my head mouth. So I think it was probably that

Scott Benner 4:39
I don't know what it is actually this is gonna sound strange, but I'm a little dehydrated since I've been using weego V. I'm having a trouble getting myself hydrated enough right and it feels like I can't drink enough water.

Jennifer Smith, CDE 4:51
Are you taking in electrolytes as well as your water?

Scott Benner 4:54
No. What should I be doing?

Jennifer Smith, CDE 4:56
Please take some electrolytes along with your daily water. It's especially if you are really like trying to hydrate above and beyond what you have been doing. Electrolytes are a really important piece of management of hydration.

Scott Benner 5:12
Should I just get like a little packet of something that goes into the water?

Jennifer Smith, CDE 5:15
Yeah, there are lots of options. I mean, the easy ones to find are the new tabs and you you N, another one is Ultima, they're really easy. Noon. If you don't want caffeine, don't buy the ones with caffeine in them. But they come in a lot of different flavors. They don't have any sugar or anything funky in them. But it's a nice way to just give a little EQ electrolytes.

Scott Benner 5:35
To do that today. I brought that up. Because if my mouth gets dry, I feel like my lip gets stuck. And the word myth like is what makes me feel that way. Anyway, I see. But I'm not quite right. I learned something by mistake by telling you my stupid story about how my mouth is getting stuck. There you go. Thank you, I'm actually going to do that. Anyway, anyway, we're back to talk about a myth. It's a short episode. But this myth is that the altered mind is a lie with and now the reason that we use that wording is because you and I did an episode called altered minds where we talked about how people can feel an act if their blood sugar's too low or too high. Yes. But that it turns out that in regular life, people who are around you may be very unwilling to believe that you're having a lower high blood sugar, and therefore that's why you're acting.

Jennifer Smith, CDE 6:25
And it's just that you're acting like a mean person, because you're choosing to

Scott Benner 6:29
Yeah, they think you're a dick is what

Jennifer Smith, CDE 6:34
it is, you might just be being a nasty person, it has nothing to do with your blood pressure, or blood sugar. Obviously, everybody can be mean and nasty at times, not out of the

Scott Benner 6:43
question at all. But here it is. I've been told that being higher low does not affect my mood. And that I am just using it as an excuse. untrue, right. So if you're too low, you can feel dizzy, disoriented. Angry. Yep. short tempered. Yep. Right?

Jennifer Smith, CDE 7:04
Absolutely. You can become honestly violent. Confuse, you can be confused and violent and try to I mean, honestly start a fight or punch somebody or shove somebody sometimes to it's interesting. If you're have a low enough blood sugar or not with it enough to know exactly what you're doing. You may actually, it's kind of like, somebody stuck under a car and you get that superhuman, like strength to like lift it off and get them out right. With a low blood sugar. There are some interesting things that end up happening and you could actually become even stronger and have and fighting several people at once who are trying to help you and you're not realizing,

Scott Benner 7:47
Oh, is that sort of like when I see police officers try to stop people who are like jacked up on drugs and they shoot them in their body still don't fall over. Is that the Have you ever seen that? Oh, my God,

Jennifer Smith, CDE 7:58
probably. I don't watch the shows that you watch. It you're watching.

Scott Benner 8:02
My friend of mine is a police officer. And during his training, part of what they showed them was like body cam footage of people on certain drugs that were attacking police officers being like hit and they weren't falling over. They were still like advancing. And so really crazy. But anyway, that's where my brain jumped just now. I will tell you that Arden got low at a family function last weekend. And it kind of came on her quickly. And I watched her try to get it like she took in a bunch of stuff. It just didn't she didn't get to a quite honestly, if I think what was happening was I think she thought she was drifting lower, slower than she was. So she had time. And she thought she had more time. So the thing she took in wasn't as fast acting and then she got lower than she wanted to be. And I looked over at her and she was shut off. Like the the food was in and she was coming back up. But she was gone in her face. Like she was sitting there trying to pretend that she was being part of what was going on. But she was not. And it took the better part of an hour for her to feel better after that. Yeah. So

Jennifer Smith, CDE 9:11
it's funny that like, I know your relationship with her. You guys have a very close family, you have a very close relationship with her. So you caught it. I wouldn't think that other people would have noticed that.

Scott Benner 9:27
Oh, for sure not. No, they're not right, or blood sugar. So they just think you're being bitchy and not involved

Jennifer Smith, CDE 9:33
or quiet or whatever. In fact, you know is I've been married a long time and that's one of the things that Nathan knows well enough. Now. If I am kind of quiet or I am not like talking like I normally do, I mean you know me and my personality is the way that it is and he'll say Are you hungry? Or are you You know, and he just he has an idea already. Have my response versus my response when my blood sugar isn't quite where it should be?

Scott Benner 10:05
Yeah. Yeah. If I, if I were to say to Arden, are you hungry, but she was low? She would see that as it's interesting, she wouldn't see it that way her reaction would be, I don't need you to tell me that my blood sugar is low. It's but that's a function of the low blood sugar because she wouldn't act like that. Not with a low blood sugar. Sure, yeah. So you can see how it changes. But you're right. Yeah, I noticed that. Honestly, I don't think anyone else Kelly knew. But I don't think anyone else knew there were a lot of people in that room, and it makes this point. But then the problem is, is that what this next person says is that people in my life believe that I'm, this is terrible, that I exaggerate how I feel. So that they can get, I don't know, like, what what they're trying to say, here is the need to eat the house, that that I'm I'm exaggerating that feeling. But I think the tone of this is, is that I'm trying to get something or get people to feel a certain way for me by exaggerating how I feel I'm exaggerating. Yeah. And so

Jennifer Smith, CDE 11:11
and that's really sad. It really is. And I think I don't know that there's a way to explain it to people. To get them like you, you understand it from a perspective of a parent. Right? Other people or other family members or friends may not see below, they may see the surface level and may very well think you're just trying to get more you're trying to get something or whatever out of the situation. When they if they really asked you after the experience, so that you were rationally talking about this with them, you could probably give them some insight into what this really feels like. And the fact that your answers are not going to be as normal and or that you may be asking for things that seem odd and out of place and whatever. And then there might be some people who are just never gonna, they're just never going to accept what you tell them. And then

Scott Benner 12:11
on the flip side, high blood sugars can make you feel nauseous, foggy, you know, that kind of stuff. And then long term high blood sugars can literally change like the person you are like, if your blood sugar is always high, your personality wise are going to be different than you would be if your blood sugar was stable. Just one of the things about diabetes that breaks my heart and that I talked about, I've talked about throughout the podcast forever and ever. You deserve to be yourself. Like that's one of the reasons that you should be striving for stability is so that you can actually in this life, be the person that you all want to be Yeah, and I will tell you this, too. I know this is a short one. But I don't talk about Mike a ton. But my friend Mike growing up had type one. He's not with us any longer. But we didn't understand what was going on either. What I can tell you is that Mike was the one you didn't let drive. Because sometimes the driving got weird. And he was a person who was one of the sweetest people I've ever met in my life. But people would think he had a bad temper. And then he would fly off the handle. And now I realized decades later, obviously, with a different perspective, Mike's blood sugar was high a lot. That's what it was. And then eventually it would crash. And then he'd eat and drive it back up high again. And that that bouncing around really impacted him. And I'm telling you that without type one diabetes, a very thoughtful, artistic, lovely person. And yet, if you ask somebody about him, you'd say, oh, Mike was a little weird. And he wasn't a good driver. And he got mad sometimes. And I never knew why. Like that. Yeah. And that's unfortunate.

Jennifer Smith, CDE 13:53
I was curious if you remembering your friend took anything out of that experience and what you've learned and applied and how you see things with art in them. Sure.

Scott Benner 14:05
Yeah. Because I knew him at his core. Like he was not he was not an angry person. Right? So it just when it happened, but when it's happening, it's so real. Because it is real. But I mean, it's so visceral, that you can't just in the moment, you can't say oh, this person is being horrible, but it's okay. Because their blood sugar is high. Like I can pull that off for my daughter. But I can't hear my son can't pull it off for like he's, I think that's how tightly you have to be attached to somebody to like, be able to look at something crazy happening and go no, no, no, that's not really them. Because otherwise, it's just it's such a visceral reaction like you can't you hit. I don't know, it's hard to just change the words coming out of your mouth. And have them be so different than the feeling that you're having watching the person react that way. But yeah, I guess maybe Mike's my experience with Mike has helped me understand that but better, but then all these people are out there in the world. And the people they're talking to don't have those experiences. So they're being told that they're overreacting. They're exaggerating. They don't really feel that way. You're just using it as an excuse. No, it sucks. It's, and I'm not saying people haven't used their diabetes is an excuse for stuff. Oh, of course, Fair enough.

Jennifer Smith, CDE 15:23
Fair enough. All right. Yeah.

Scott Benner 15:26
One time Martin said to me, she was in college, because I've never used my diabetes as an excuse for anything. And I was like, okay, because I really haven't ever. Oh, my God, he goes, Do you think I could just this one time today? She's like, I'm trying to study for this exam. And I was like, I was like, Are you go for it? Do whatever you need to do. So anyway, the altered mind is not a lie, your mind becomes altered with high low blood sugar, high, low, high blood sugars, low blood sugars, bouncing blood sugars up and down, up and down. Instability, all of that changes the chemistry in your body and how your brain works. I mean, honestly, Jenny, it's, if I'm sorry, oh, no, go ahead. If I take salt out of your system, if you become dehydrated and low on sodium, your brain gets altered. Yes,

Jennifer Smith, CDE 16:15
and your heart rate and lots of different things happen at different

Scott Benner 16:18
times. Good, just from sodium not being there. So it's not crazy that glucose would have an impact as well. That's all I

Jennifer Smith, CDE 16:26
know. In fact, if people understand that, outside of a ketogenic diet, your brain operates on glucose. Right? And so why wouldn't your thoughts and everything get altered? If you think about how your how in terms of feeling everybody with diabetes can understand how their thinking gets altered, when their brain isn't getting the glucose that it needs? Right? Explaining that I think what I was gonna say, once the person with diabetes is out of that low or that high blood sugar to explain to somebody else who doesn't really think that alter, altering of kind of a mental state is actually happening. It would be good for them to discuss and say, What am I usually like? And how was I during, you know, this evening time period where you kept complaining that I was just being a mean person, right? Am I usually like that. Sometimes you have to call people out and say, you have to point it out. Yeah. In order to be able to prove a point and explain what they're not understand.

Scott Benner 17:38
It's in the endzone, it's communication. And that's the hardest thing, right. So anyway, I appreciate you doing this with me very much. Yes, thank you. I'll talk to you soon.

Our good friend Jennifer Smith works at integrated diabetes.com You can hire her to help you with your diabetes care. I want to thank you guys so much for supporting the show and for sharing it with so many others it grows every day because of your kindness. Don't forget to check out the private Facebook group, the public Facebook page, check me on Instagram, the Tick Tock machine anywhere you get your socials Juicebox Podcast is there. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Now enjoy some music. And I'll give you some other stuff at the end.

Once there was a time when I just told people if you want a low and stable a one C, just listen to the Juicebox Podcast. But as the years went on, and the podcast episodes grew, it became more and more difficult for people to listen to everyone. So I made the diabetes Pro Tip series. This series is with me and Jenny Smith. Jenny is a Certified diabetes Care and Education Specialist. She's also a registered and licensed dietitian and a type one herself for over 30 years and I of course, am the father of a child who was diagnosed at age two in 2006. The Pro Tip series begins at episode 210 with an episode called newly diagnosed or starting over and from there all about MDI Pre-Bolus Singh insulin pumping, pumping and nudging variables exercise illness, injury surgeries glucagon long term health bumping and nudging how to explain type one to your family. Postpartum honeymoon transitioning all about insulin Temp Basal. These are all different episodes setting your Basal insulin fat and protein pregnancy the glycemic index and load and so much more like female hormones and weight loss. Head now to juicebox podcast.com Go up in the menu at the top and click Gone diabetes pro tip. Or if you're in the private Facebook group, there's a list of these episodes right in the feature tab. Find out how I helped keep my daughter's a one C between five two and six two for the last 10 years without diet restrictions juicebox podcast.com Start listening today. It's absolutely free. Everybody who has diabetes has diabetes supplies, but not everybody gets them from us med the way we do us med.com forward slash juicebox or call 888-721-1514. US med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide, and they always provide 90 days worth of supplies, and fast and free shipping. That's right us med carries everything from insulin pumps to diabetes testing supplies, right up to your latest CGM like the FreeStyle Libre two N three and the Dexcom G six and seven. They even have Omni pod dash and Omnipod five, they have an A plus rating with the Better Business Bureau and you can reach them at 888-721-1514 or by going to my link us med.com forward slash juicebox. When you contact them, you get your free benefits check. And then if they take your insurance, you're often going and US med takes over 800 private insurers and Medicare nationwide. better service and better care is what US med wants to provide for you. Us med.com forward slash juicebox get your diabetes supplies the same way Arden does from us med links in the show notes links at juicebox podcast.com to us Med and all the sponsors when you use my links you're supporting the show

#967 Type 1 and Tetrasomy 9p

Vivian was diagnosed at 9 months with type 1 diabetes, she also lives with Tetrasomy 9p. Her mom Kim is here to tell us about it all.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 967 of the Juicebox Podcast.

Today I'll be speaking with Kim. We're gonna be talking with Kim about her daughter Vivian, who is diagnosed with type one diabetes at nine months old. She also has something called Tetris Somi nine P. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you'd like to get a little something for nothing, start using ag one with my link. Drink ag one.com forward slash juice box when you use that link. To get started with ag one. You'll also get five free travel packs and a year's supply of vitamin D. Also for free 40% off is that something you're interested in cozy earth.com Get all your comfortables that cozy earth.com towels bedding and clothing save 40% at checkout with the offer code juicebox. And don't forget the private Facebook group Juicebox Podcast type one diabetes on Facebook. Check it out, become a member and join the other 40,000 members some of whom have type one type two or other caregivers off. This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter contour next.com forward slash juicebox. These meters are incredibly accurate, they're reliable, they're easy to use, they're beautiful contour next one.com forward slash juice box do not walk around with a junky meter in your pocket. Get an accurate one. The after dark series from the Juicebox Podcast is the only place to hear the stories that no one else talks about. From smoking weed to drinking with type one perspectives from both male and females about having sex with diabetes. We talk about depression, self harm, eating disorders, mental illness, heroin addiction, use of psychedelics, living with bipolar being a child of divorce, and honestly so much more. I can't list them all. But you can by going to juicebox podcast.com. Going to the top and clicking on after dark. There you'll see episode 807 called one thing after another episode 825 California sober. Other after dark episodes include unsupported survivor's guilt, space music musician, dead frogs, these titles will make you say what is this about? And then when you listen, you'll think that was crazy. juicebox podcast.com Find the afterdark series. It's fantastic.

Kim 3:00
Hi, my name is Kim. And I have a daughter with type one diabetes and special needs.

Scott Benner 3:08
Okay, Kim, your daughter is an only child.

Kim 3:12
No, I actually have four children. He she has two older brothers. And then we had a bonus baby during COVID.

Scott Benner 3:20
What a lovely way to say that. It doesn't happen. I'm quite certain of that. Okay, so two older brothers. Younger. She's right there at number three. Are we using your name? It's okay. If we don't Sure. Yeah. Yeah,

Kim 3:35
I'm gonna accidentally say it a million times because I talk about her frequently. We are an open book because we feel that her story helps people and I'm all for it. Cool. What's her name is Vivian. Vivian.

Scott Benner 3:49
Do we call her? Or she Vivian?

Kim 3:51
Oh, she's Vivi. The VISTA. Vivian. All the all the above. Gotcha. How old is she? She is six now. She was diagnosed when she was nine months old. Wow. Yes. Extremely rare.

Scott Benner 4:07
Wow. No kidding. Yes. All right. So I guess Can you tell me a little bit about the diagnosis? How does it present in a baby?

Kim 4:16
Yes. So we had an extremely challenging first year of life for our sweet Vivian. I'm going to back up a tiny bit before her diagnosis just to give you a little background. She was a quiet baby. She slept a lot. She was very tolerant of her older brothers, Mike Choate. My top three are like 21 months apart each. So it's an it was an active household and the boys would put their full body weight into her to kiss her and she would just not even flinch. So we kind of equated that to her being a girl. We've never had a girl before. So we were just like, wow, she sleeps a lot. We finally have a sleeper. She's quiet. She's tolerant. She hated tummy time. That was one thing that we did. Notice and she also choked on her breast milk, constantly, every single feeding, she choked. And I brought it up to the pediatrician multiple times. And she kept saying, Oh, it's because you have a strong letdown, it'll show it'll regulate, she will learn how to how to deal with it. So then at our four month well visit, the doctor comes in the room, gives her a quick assessment, and I had my other two kids, they're getting flu shots or something. And my father because I needed kind of help to wrangle the children. And she says Vivian has low muscle tone, and I'm not impressed with her eye contact. I think she needs early intervention. And then she walked out of the room gave me the phone number walked out of the room. It was so quick that my dad didn't even know that it happened. Like he was sitting there and he didn't even hear it. Okay. So I come home shocked. And I did all the things called the number to talk to my husband. We were just completely in shock and in denial, and a little bit embarrassed, because by background, I'm actually an occupational therapist, and a nurse, and he's a nurse and a nurse practitioner. So we were like, how did we not know that she has low muscle tone? And how did we not know that her eye contact isn't great. But anyway, at five months old, she was evaluated for early intervention, and she started and when they came to our house, we actually said to each other like, she's not even gonna, she's not even a qualify, like, it's, it's, I mean, they're gonna come and assess her, but she's fine. You know, talk about talk about denial, they leave our house, and they're like, she's significantly delayed in all areas. She needs physical therapy, occupational therapy, speech therapy, and teacher the visually impaired, and what a punch to the gut. Like, we were just just in complete disbelief, shock, all of all of the above. So then she starts all her services, we're kind of getting on board with the idea that she has delays. And we're supporting her in every way we can. And she continues to choke on breast milk, the doctor continues to say it'll regulate it's fine. Then at six months old, she was hospitalized for RSV, which is actually like, really crazy right now, I don't know if it's crazy around your area. But RSV is just like a really, really bad cold. And she landed in the hospital just from having RSV because she was so frail, she was not strong enough to fight it off. She came home, she went right back in the hospital, again with RSV again. So she's hospitalized twice in the same week. And during that hospitalization, she had a swallow study done. And she was in fact aspirating the breast milk into her lungs. Oh my god. So I saw

Scott Benner 7:47
the doctor who said don't worry, she'll catch up drinking is the same doctor that said, I'm not impressed with her muscle tone, etc. Yes, yes. Yes, I saw all that, but didn't correlate the two things together. Yeah, and

Kim 7:59
I'm not sure if she would have at our next visit, but our hospitalization came first. And and they they just did a swallow study and boom, she's aspirating. So Subsequently, I changed Peters pediatricians after this experience, because as a mom with a child with special needs, and certainly a mom of a child that has special needs and type one diabetes, you need to be listened to you need to be heard by your providers. And I didn't feel that way. So we we have a new pediatrician, sidenote, so that six months old, she that hospitalization everyone was just like, couldn't all the doctors were just like, Why? Why is she so failure to thrive? Why is she aspirating? Why does she Why is she developmentally delayed meeting the services like we need to investigate this further. So we kind of got on the fast track to see a developmental pediatrician and a geneticist. So those both of those things were like year long waiting lists, but because she was hospitalized twice in a week, she got on the fast track for that. So we came home and we added feeding therapy to all her different therapies. And it was really crazy because in order to breastfeed her, I had to keep her sideline, support her cheek support her chin. It was a whole big rigmarole. But

Scott Benner 9:22
imagine as well, the pressure of thinking constantly that this milk is ending up in our lungs.

Kim 9:28
Oh, it was awful. And it's funny like I was I was gonna say the beginning I kind of like did a little digging in her old medical charts to kind of remind myself of the story. And god there's so much I completely forgot about and completely blacked out because there was just so much trauma, just so much trauma that we lived this first year. But anyway, so crazy crazy with the breastfeeding and the the issue was that she wasn't strong enough to get some milk from me. And because she was my third child I told my body thought I was weaning. Even though I was feeding an infant, my body thought I was weaning. So my body wasn't producing enough breast milk because she wasn't stimulating the breast enough with her poor strength and poor coordination in her mouth. So I wasn't, I wasn't providing her enough, either. Okay, so it was just an awful situation. And I did get tremendous support from the local hospital with as far as feeding and supporting continuing breastfeeding. So then at eight months old, we finally saw the we had seen the geneticist and at eight months old, we find out through a blood test that she has an extremely rare chromosomal difference, which explained everything of why she was having feeding issues, why she was having low muscle tone, why she was having developmental delays. So it was it was shocking. Again, it was like another punch to the gut. But at least we had a reason, you know, that these things were happening. And unfortunately, this chromosomal difference is so extremely rare, that at that time, there was only 66, zero people in the world that had something similar. So we had very little information about it, and we had no real connections or supports. But in a way, it was great, because we were going to let her write her own story. You know, if we don't know what's going to happen, then Gosh, darn it, we're going to support her in every way we can to maximize her potential, right? Because she's gonna she's gonna write her own story.

Scott Benner 11:34
So, so the thing that that is a skew is so I mean, rare, I think is the obvious word is so rare, that it's not even something that you can hold up to other people who have a similar problem and say, you know, like, I don't know, like type one diabetes, because a well, that person's pancreas doesn't blah, blah, blah, either does that one. And these guys have the same thing? It was the people who was justly have these problems, but they can't even put them into a into a bucket. Is that right?

Kim 12:06
Right. And we actually walked in to our first appointment with the geneticists to talk about the diagnosis with a packet of information that we got printed off. So there's a website called unique, and it's like all the unique chromosomal disorders and we found it, we printed this off. So we we come to the appointment with that packet of information, and the doctor walks in with the same thing. He's like, I did research, I found this packet, the only thing I have, and we're like, yeah, we already read it. And in this packet, there's, you know, a handful of children and adults that were interviewed and whatever and every single developmental area, it was so very, like, your child could be wheelchair bound, or they could be running, your child could have significant swallowing issues and have a G tube, or they could be eating with no problem. Your child could be nonverbal, or they could have no speech issues whatsoever. So we were just like, forget it, she's written her own story. We're supporting her. This, you know, let's move on. So then we come to May 5 of 2017. She had her another swallow study that basically showed her swallowing sitting up, and it was a disaster. So they basically were like, you have to thicken the breast milk. If you're going to give her breast milk sitting up, you have to second anything, you give her very significant swallowing issues. I come home from that swallow study. And I got the stomach bug, as did my entire household except for Vivian vomiting, you know, throwing and going the whole nine awful, awful illness, bed bound for four days, my mother comes over to take care of my children, because I literally could not get out of bed. And this little girl who had had such a such trouble eating and maintaining her nutrition and breastfeeding and swallowing and all that jazz, my Italian mother comes over and she's going, Kimmy, she's eating great. She just ate a whole you know, kind of baby food. And I'm just like, of course, my Italian mother can get her to eat and I can't

Scott Benner 14:14
know you're gonna say is definitely for some reason.

Kim 14:20
And then like this girl can net would never was able to, you know, manage a bottle like she, she needed cheek and chin support sideline to even breastfeed poorly. She would never be able to coordinate a bottle. She was taking, you know, sick and breast milk out of a bottle from my mother. And I'm just like, I'm just like, geez, like, of course my mom wins. And I'm like the worst mother ever, you know? Like, that's just what I thought. And then she started peeing through her diapers at night. And I said to myself, Oh, she's eating more and drinking more. So she's in she's bigger. She's a big girl. Now maybe we need overnight diapers. So I sent my husband out to get overnight diapers. Meanwhile, Scott, I have type one diabetes in my family. I am a nurse, my husband's a nurse, we should have known something i I'm still, I'm still kind of embarrassed with myself about not really seeing the signs. I really, truly in my dehydrated state thought it was just because my mom was awesome that she was eating and drinking more. And she was a big girl now needed overnight diapers.

Scott Benner 15:30
Can you tell me type one diabetes in your family? Who?

Kim 15:33
Yeah, so my uncle, so my mother's brother, okay. And he actually died of complications of diabetes because even you know, 20 years ago, they manage diabetes so differently. He never carb counted, right? He always like my entire life. He had a sliding scale long acting in a sliding scale. Yeah, he had major complications for it, but and then his grandson, so there is an I have Hashimotos My mother has Hashimotos. So the endocrinologist upon diagnosis said that we just have an auto immune family. And you know, she just got struck by lightning, but actually struck by lightning lightning twice because she had also been struck with this very rare chromosomal difference.

Scott Benner 16:19
I have to let me make sure the chromosomal differences is does it have a name?

Kim 16:25
It does. So it's called Tetra Somi nine p. So she has four copies of just the short arm of her ninth chromosome.

Scott Benner 16:35
I don't understand what that means. But I was able to go Yeah, okay.

Kim 16:40
And really like, it presents itself extremely, you know, varied across the board, no two children are the same, or two adults are the same. But with you know, for Vivian, her main issues have been swallowing speech. She is extremely apraxia with her speech. So she actually uses sign language, some verbal and a communication device to speak. And then she also has that low muscle tone in her trunk. So she's recording that she has significant visual issues. One of her eyes is nearsighted and one of her eyes is far sighted. So amongst other things,

Scott Benner 17:18
okay, we'll get back I just, I just need a little context where I will come back to that a little bit. I'm sorry, you keep going. So your mom, your mom gets her to eat. Now she's paying through the diapers. Yeah.

Kim 17:29
Everybody. Everybody had gotten a stomach bug in that four days, you know, except for her. I looked at my husband, I go listen, if she throws up even once we're going in. And he's like, agreed, because of our experience with the RSP. We just we knew she was going to need IV fluids. Right. She's so failure to thrive one vomit is it. So of course during that night, she vomited. We call the pediatrician. He says Bring her here first. It wasn't our it wasn't our pediatrician. It was a just whoever was there. He said bring her in first. We're just going to check her out. Now I had been taking her weights daily because of all her feeding issues that the doctors and the speech therapist feeding therapist wanted me taking daily weights. I hadn't been taking daily weights because I was so sick. So in that four days that I was sick. When she got to the pediatricians office and they took her weight. She had lost 11 ounces.

Scott Benner 18:26
On how big of a body at that point. Do you remember how much oh god

Kim 18:30
she was? She was barely 14 pounds. Wow. Okay. Yeah, yep. She came when she came home from the hospital a diabetes. She was 1411. Yes. So she lost 11 ounces and about four to six days I would say. So the doctor agreed she's majorly dehydrated. I explained to him like I don't I don't think she's been getting breast milk from me because I'm so dehydrated. Like she needs IV fluids. He goes agreed take her in. Now any other child that I had had previously, my two sons and even Vivian had she not had the RSV I would have said she's got the stomach flu. She wants to sleep. I'm gonna put her in her crib and let her sleep. When we got to the hospital, they took a blood everyone agreed she had the stomach flu just like we did. They took a blood glucose just for you know, I think it's just standard protocol. It's 597 and my husband and I, being nurses knew immediately what that meant.

Scott Benner 19:29
It meant you had to abandon your children and runaway you were just gonna leave for the two of you got a car and you're like that's it. We're done goodbye.

Kim 19:36
I like we said to each other, like if there was furniture to throw we would have grown it we were just swearing and screaming and the nurse even her when the the number came up. I remember her holding the glucometer in her hand was trembling, and she just goes and I know like as a nurse. She shouldn't have done this in front of us but I'm always glad she was She did, because it just shows how human nurses are. But you know, that deep down, she goes, Oh my god, oh my god, oh my god and just ran out of the room. And we're just like, you know, swearing, you know?

Scott Benner 20:15
Well, that's awful. I would have been like, okay, everything's on brand for us.

Kim 20:21
It was it was just so traumatic. So she was whisked away to the ICU, the endocrinologist comes to see us immediately talks about how rare it is to be under two. And how extremely rare it is to be under one. And I said to my husband, I go, if somebody uses the word rare with us again, I'm going to punch them in the face. You know, like, I am so sick of being rare. I'm so sick of hearing it. It was just, yeah, it

Scott Benner 20:51
was. It wasn't. It wasn't. Hey, Kim, do you know how rare it is to win the lottery last Thursday, and yeah, it's crazy.

Kim 20:57
So we always say we're not the win the lottery type of family where this be struck by lightning type of family.

Scott Benner 21:04
Like you are going to be the people who get hit with the frozen urine that falls out of the air.

Unknown Speaker 21:12
She gets whisked

Kim 21:13
away to the ICU, the doctors come and they're all talking about us. She was also found to have a UTI at the time. And we talked a lot about her hospitalization when she had RSV, just a few months prior, and how the RSV probably ignited the auto immune response and ignited her, you know, predisposition to diabetes. And they actually also told us that had we put her down for a nap, instead of coming to the hospital, she would not have woken up, because when we arrived, she was about one hour from death. That because she's just so she was just so frail, you know, just such a tiny little baby. So they had to take her to the ICU put her on an insulin drip because the blood sugars have to come down slowly as to not cause brain swelling. So she was monitored there for a couple of days. And then at the hospital, we go to there's, you know, the pediatric endocrinology unit, they actually have you demonstrate that you're able to take care of the diabetes before you can be discharged. So a typical hospitalization could be up to like 13 days, but because we were nurses, we sort of like showed them sooner than we were capable. We got out of there in I think nine to eight or nine days.

Scott Benner 22:29
How do you Bolus for thickened breast milk?

Kim 22:32
Oh my gosh. Scott, do you want to hear how crazy life was sick? I

Scott Benner 22:37
think I already didn't care. But if there's more Yes, please go ahead.

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Kim 26:01
So the other problem when she was diagnosed with diabetes is she completely stopped eating, she 100% stopped breastfeeding eating in any way. So she actually was an NG tube was put in so a little tube into her nose down her throat and into her mouth, or sorry, into her stomach, and she came home with an NG tube. So that's another thing we had to demonstrate competence in, but I was pumping in the hospital. And because I was so dehydrated for those days before her hospitalization and because she stopped eating, I was pretty much producing nothing at the time. And the lactation consultant came to me, and she knew how often I was pumping every hour, I think when we were in the hospital, just to try to get my supply up. And the lactation consultant was so supportive. And she said, you know, Kim, listen, we're going to put your breast milk through the feeding tube, but she is going to need formula. And it doesn't need to be second through the feeding tube because it's going directly in her stomach. And, you know, I accepted that fact, they also found that she had blood in her stool. So they equated that to her having a an intolerance to my breast milk because I was drinking milk. So I stopped milk and soy so that she wouldn't have this irritation from the breast milk like you know, she doesn't need anything else bad going on. So she knew how much I was like, dedicated to continue breastfeeding her because I had done all those things. And I was breastfeeding. I mean at breastfeeding, pumping every hour on the clock that she says to me, this is the day before I went home, she said Kim, listen, you can go home and breastfeed your daughter for comfort. Or you can pump every two hours, breastfeed her every hour, do a power pump. Once a day power pump is like you pump 20 minutes on 20 minutes off for an hour and give her the formula through the tube give her the breast fed milk through the tube. But you know, basically it's going to be a ton of work to get her to keep your supply up and continue breastfeeding and do it in a safe way for her swallowing. She's going to have to be sign lot sideline, she's going to have to have her chin and cheek protected. I even did an SNS system where there's this tiny little tube that had formula or breast milk in a little bag and the tube came down and was taped to my nipple. So that when she was feeding, even if she wasn't getting anything from me, she was getting a little bit of something coming through the tube so that it would stimulate my breasts thinking she was breastfeeding, but really she was getting most of it from the tube. So she's like, you could breastfeed for comfort. Or you could do all that crazy jazz. Oh, and then like Guinness, and you know, I forgot the name of it. There's like different herbs and things you could take to fenugreek to stimulate breast milk. You could do all those things, or you could just breastfeed for comfort. And I was like, Oh no, I'll do the complicated one. So she comes home with diabetes, a feeding tube. I was breastfeeding her every hour with an SNS system. I was pumping every two hours. I was feeding her sitting up baby food. But with the baby food, we had to fortify it with either peanut butter avocado or coconut milk to add fat and calories to it. So I actually found in my little research last night, I found an old piece of paper from July of 2017. And it's just this crazy schedule. And it looks insane. Like I was actually insane to be doing this. But I did it and she breastfed until she was three and a half years old. Oh my god.

Speaker 3 29:43
So So there I proved everybody wrong. No. Thought about that.

Kim 29:52
Exactly. Exactly. No, the the the moral behind that story is like you cannot turn off the mama bear you cannot turn off The power of a parent of a child who needs help, you know it just Yeah. And that's, that's why I'm an I'm an advocate today I started a not for profit advocacy group and it was all from my experiences with my daughter. Yeah, she. So after three weeks of being home with the feeding tube, she pulled it out herself. She got strong enough that she pulled it out herself. And we put it back in. And it's like so crazy to put it back in the screaming, the crying, the awfulness, she pulls it out again, we put it in again. She pulled it out again. And it was a Friday afternoon. And my husband, I looked at each other, we're like, Oops, it's Friday afternoon, no doctors are going to be able to be called I guess we'll just have to leave it out for the weekend. And see how she does. We'll call them Monday morning, whoopsie doodle. And Monday morning, we call them and they were like, This sounds like she discharged or discharged herself. And let's just see how she does. And it never went back in after that day. And that's VIBs personality, she does not stop. She is always fighting, always doing more.

Scott Benner 31:11
She she took that to about and because you had the weekend, you were able to try to feed her and it just started to work.

Kim 31:18
Yeah, we just we just said like, listen, she doesn't want it in. If we had called the doctor, they would have said put it back in, you know, but we're just like, oh, we can't call anybody. I'm not gonna call an on call doctor just for this. And we're, you know, sort of like, jokingly, and we just said we just fed her regularly over the weekend. I breastfed her we did. We did all the things. We gave her all the fortified foods, and she did fine. And on Monday, they decided it didn't need to go back and we followed her lead. And then never went back in. And to this day, without now fast forward. She's six years old. Now. She is eating completely normal foods. She has no restrictions in her diet. And with her swallowing of liquids, that was the hardest thing to conquer. She is now able and COVID kind of helped us with this this portion of her life. Because I was home with her and all the kids during COVID I was able to like really concentrate on her swallowing and all the little things I had to do to support her swallowing. And I got her to get on ice cold, thin liquids. So she now drinks liquids as long as they're iced. And you're probably wondering why they need to be iced. It's because hurt she has a neurological delay of swallow. So her brain doesn't get the clue in time to swallow when a liquid hits the back of her throat. But if the if it's iced, it's like Oh, something cold and it elicits her swallow quicker about that. So yeah, so now she's pretty much eating and drinking, you know, quote normally. So we've come a long way. Yeah, that was basically her first year of life.

Scott Benner 32:56
That's fascinating. Also, do you know what? It's fascinating that I just realized when people say COVID We know it to time period. It's almost like you said the crustaceans period, and I went oh, yeah, exactly. Yeah, I know what you mean. Yeah. Yeah, it was. It's funny because it is a word that means two different things. Like if you didn't know, if you didn't understand that part of speech, he would just be like, I don't understand why did getting COVID help and help. Yeah, but so many that like, oh, you know, it was really a blessing in disguise COVID. And I'm like, yeah, they mean the time for anyway, I don't know why I got, ya

Kim 33:30
know, and there was a couple of more blessings from COVID. For her in particular, because one of her most effective forms of speech therapy is called prompt, and the speech therapist prompts her with tactile cues on her face for different sounds. Like for example, the end sound is putting a finger against the nostril. The sound is touching the bottom of your chin tuck. So I got to learn the prompts because it was over zoom. I was learning I had to do the prompts on this side of the camera. And the therapist was on the other side, you know, doing it to her own face. Yeah. So remember, we were able to do Yeah, we were able to do the prompts. And she's really, really blossomed verbally during COVID. With that prompt therapy, and I could do it even to this day, and she actually started she has started to prompt herself with a lot of the sounds, which is the goal. Well, the goal is to not need the prompt at all. But yeah, and then the other thing is I potty potty trained her. So in the first like three days, I think of the shutdown, she was potty trained. So that was that was kind of cool too, because there's some silver linings.

Scott Benner 34:45
Well use time. I have questions now. Yes. Okay. So intellectually, is there any deficit there?

Kim 34:53
Yes. So she actually has scored so you know, there's like receptive language and expressive language, right? So expressive language, she's obviously significantly impaired, it's very difficult for her to get her brain to know what it wants what know what she wants to say. And actually it come out her mouth and says, say it with our good articulation. That's apraxia. But receptive language, she's only been found to be either average or mildly delayed. However, with standardized testing, it's she they say that she's like significantly cognitively impaired. But you can't be significantly cognitively impaired. If you have average, you know, receptive language, it just doesn't make sense. Because she understands everything that's going on.

Scott Benner 35:41
So those tests don't do a good job of testing her. Basically,

Kim 35:45
they don't. And a lot of the tests that are nonverbal, because she needs a nonverbal test are heavy visual, but she also has visual deficits, she also has significant attention deficit, she just was diagnosed with ADHD. So the standardized testing is not going to work for this girl. Okay, but I'll tell you, she is not going to be able to I know, I know, she's not going to be able to do the high level problem solving that diabetes requires. But she does know that she has diabetes, and her six year old brain diabetes is, every time I eat something, I have to show my mom what I'm eating so that she can give the insulin because I need this, I need this medicine to eat. And then when the alarm goes off, she knows to go get her candy gourd, pumpkin, and then give them out to her brothers. Because when Vivian has a low, we all have a low. So we all get the candy. So she knows that and she knows that she needs to get an adult, if the you know, any alarm bells go off, if they didn't hear it in her classroom. There are concerns there, there are concerns for me long term, as there are with many parents of kids with type one that also have special needs. I do question her ability to manage this disease long term, I don't I don't think she will be able to manage it the way that we do. So we will be her pancreas forever. And I know that the technology is advancing so much that I do have hope that she will be okay in the future when I'm gone. Because I think that there will be an artificial pancreas by then. Or at least like the first step would be that wonderful pump that's coming out that has the double lumen where it's, you know, giving insulin but also giving glucagon. So,

Scott Benner 37:38
yeah, that's been in development for a really long time. So

Kim 37:41
yeah, but I feel like it will happen in her lifetime. I

Scott Benner 37:45
certainly if something like that is going to happen. I made this point a couple of years ago on the podcast, but one of the reasons I got excited about GE voc when it came out was that it's it's stable, like the one of the problems they were having with that pump. The idea that the pump would do an algorithm to you know, give you insulin, but if you started to get too low, it would give you these kind of like mini glucagon injections, right. But the problem was the glucagon wouldn't stay. It wouldn't stay stable in the pump. So a liquid stable glucagon goes a long way towards I don't know that GE voc is involved in this or not. I'm just saying that that exists now. is a is a big step towards that. So you might be right, you might get that someday, can I

Kim 38:30
That's my hope. That is my hope. I already have seen in her six years of having diabetes. Such advancements that have been life changing for us. Yeah. I it just gives me hope. And I actually like the story of her getting her first pump as another crazy one.

Scott Benner 38:46
Can I ask a couple questions that I'd love to hear? Sure. Sure. She was wearing glasses, I imagine. Yes, yes. And

Kim 38:54
she's actually getting a contact soon, too. She's gonna do she's going to wear a contact in her. If it works. I'm not quite. I'm not quite sure about her wanting me to stick something in her eye. But we'll see how that goes. The contact is going to be for one eye and then the glasses will be for the other eye.

Scott Benner 39:12
I gotcha. Did she feel her lows at all? Like, can she tell you? She's low?

Kim 39:17
No. Do you want to hear something crazy? And I don't know if this is just her? Or if it's because of the ti 90? I don't we really have no clue. We never will. But she will be in the 30s and sort of start to look a little pale and shaky. And that's about it. Like that's how low she has to go to show very mild signs

Scott Benner 39:41
going forward in the conversation. You don't have to say do you want to hear something crazy? As a matter of fact, if you have something that's not crazy, you should say do you want to hear something? It's not crazy, because that would surprise me. I'd go Oh, you have something that's not crazy. Sure. What's that? Exactly. I want to try to understand what her Life is like, so she Yeah, she gets up in the morning. Does she go to school? She homeschool? Yeah. She goes,

Kim 40:06
Oh, no, no, no, she goes as well. So she went to, um, she had a ton of early intervention services. She had a ton of preschool special ed services. And she ended up going to a, like very specific special ed preschool and really flourish there. Of course, COVID hid during that time. So we shifted to online and I think I was doing like 19 zooms a week with her. And for kids with special needs zoom doesn't really work. So it was basically like equivalent to wrestling a wild baby alligator for 30 minutes for her to get maybe four good minutes out of it. But I you know, like I said, we are doing everything we can for this girl and we dedicated that's I haven't worked since she was born basically until this year, because we are 100% dedicated to maximizing her potential and she actually is in a gen ed classroom. She started kindergarten last year. It's considered a gen ed classroom. It's called ICT integrated, co taught so she has a full time gen ed teacher and a full time Special Ed teacher in the room. And there's about nine kids that have IEP s and the rest are typically developing. And she stayed in that same classroom. Kurt, you know, currently she's in first grade with the same kids and the same teachers because they looped which was awesome. Like she there was no transition or reading to learn personalities or anything routines. She just took off this year like, took off running. She wears Dexcom she has a tandem pump now which has been life changing. And yeah, she she takes dance class. She's does bowling she does. She's in a challenger bowling league. She's in a challenger Baseball League Soccer League. She does dancing. She's in a dance class called dancers with diverse abilities. She really loves life. We have respite workers that come and take her out on outings she like her most important thing in her life is to go to the store, get a Starbucks, go to Target get a Starbucks shop for purses, and just live like the life of a teenager even though she's only six. She loves it.

Scott Benner 42:14
How much of her care. I guess how much time is leftover after you care for her every day. Thank you. Are you seeing a distancing from your other children? Or your husband or your you? Oh, yes, your stuff? Yes, we Yeah, I can we? How much coke do you do, Kim?

Kim 42:32
Exactly, exactly. I started I started late certainly drink a lot of caffeine. My husband and I have had a very challenging life and marriage. Since Vivian was born. We constantly feel guilty that we're neglecting the other children, of course. But time and time again, we've learned that and it's been through the help of various we have a very supportive village of people like oh, God, such a great support, but they always point out to us like your sons are beautiful, wonderful, caring, empathetic, resilient children, because of their experience with their sister like they are better people. Because she was born like every person that Vivian meets as a better person after meeting her.

Unknown Speaker 43:21
Yeah, no, i and i also

Kim 43:23
think like very strongly, I was an occupational therapist, I was a nurse or I am I should say, you know, you can't can't get that out of your blood, all of my schooling, all of my careers, previous careers, all of those jobs, all the experiences I've had as an OT and a nurse, it wasn't to become an OT or nurse. It was to become Vivian's mother. All of that was to become her mother.

Scott Benner 43:49
Wow, how about bolusing strategies? Do you like do you listen to the podcast? I do. I do. And is actually about it help you or does it not apply to Vivian?

Kim 44:01
No. So I'll tell you the pump story with her. And I'll tell you the how the podcast helped me get more bold with insulin for sure. For sure. Back in the day, when she was nine months old, and she came home. She was just on a very low dose of Lantis I think one unit per day. Then she had like a honeymoon period or whatever. Very short honeymoon period. And then we were bolusing her for the little bits of yogurt or baby food that she was eating with the fortified coconut oil or avocado or peanut butter in it and we were doing like a carb counting type of thing for that. However, she was so tiny. I could not safely give her a small enough dose in a syringe without overdosing her. So our day would consist of knowingly Oh We're dosing our daughter for a blood sugar of 487 and then dropping to 41. And us giving her cake frosting to get her out of the low. Because she couldn't swallow juice. She couldn't chew candy like cake frosting was pretty much it and it actually still is what we use overnight when she's sleeping. She She sleeps right through it if you put cake frosting on a spoon and put it in her mouth. So we were overdosing her and then rescuing her with cake frosting all day long, for nine months, because our insurance company thought that it was too dangerous to use technology on a baby. Even though our argument was the safest lowest dose you can give a baby with a syringe is point five units, the smallest dose in the most basic pump available at the time, which was the Medtronic mini med was one. So half of the unit in the syringe is the safest for the syringe. The mini med pump would give her 140s of a unit technology is the only way to safely treat a baby. It's the only way to safely treat for a baby. So our endocrinology team fought like hell for us to get a pump. I actually was looking through our documentation, our little packet here of documentation, I found a letter, our pump was denied by the New York State Department of Financial Services, the Department of Labor, because my husband, he worked for a university hospital. So he is under the employee insurance. And I guess it went to the even the United States Department of Labor to deny it, because they were calling it experimental. Once they call it experimental and some other crazy word, investigational,

Scott Benner 47:02
you would think you were like, people would hear your story and just be like it just give those people what they want. It doesn't matter. Like let them leave them alone.

Kim 47:11
It came down to basically talking to the CEO of the of the hospital, it came down to like one person to be like, listen to our daily life. Listen to us, like we are parents. And I think this person made the decision emotionally. I think they maybe they are parents themselves, or they they finally got it. We were denied, denied, denied. Starting in August, the fight started, we were denied by the Department of Labor in September, we were denied again for the final determination by our insurance on December 13. And then we talked to the head of the head of the head. And then finally on December 22 of 2017. The very basic basic pump mini bed was approved. And then we ended up getting it I think at the end of January. So she was 18 months old, diagnosed at nine months old. And we did that crazy overdosing rescue, checking her blood sugar, probably 30 to 40 times a day checking fingerprints, you know, along with the pumping and the power pumping and the feeding tube and coconut oil and did all that.

Scott Benner 48:19
I don't know how for nine

Kim 48:21
months. Oh my god. Yeah. And I had to remind myself, like I seriously blacked this out like,

Scott Benner 48:27
oh, I would imagine I would imagine you're living your life and like three days segments.

Kim 48:33
I'm looking at these old logs. It's like 8:24am BG for 58 gave a half a unit injection 10:22am 95 11:16am 61 11:40am 41 gave a half of a tablespoon of frosting. What does that say? Insane? That's insane. But we were just living it, you know? Yeah. So because we fought for so hard for this pump. We then applied for Dexcom the next day, and they just gave it to us. Like they were just like we're not dealing with these people again, they just gave us the Dexcom. So that changed our life significantly because we didn't have to fingerstick her 30 to 40 times a day. And then with the mini Med, we were able to give her point oh two five doses, which was a whole meal for her sometimes was that little amount really? And yeah, and the breast milk because I was breastfeeding her and not putting it through a bottle because you can't give sick into breast milk in a bottle. You can spoon feed it. I was just guessing. I'd be like, Oh, well I pumped an ounce or two ounces. So I'll give her like two to three grams for that for that breastfeeding session we just had. So it wasn't it was insane. Yeah,

Scott Benner 49:50
the truth is, is that a lot of that story around the eating in the bolusing. I mean, aside, aside from Vivian's obvious differences from Arden, like a lot of that But we did to like, I don't know if I've ever told I've ever told this on here. Like, one time I took some insulin, they drew up at a syringe and I squirted it back into a dish. And then I colored it with food coloring, so that I could see it. And this never went into art. And it was like as a test, and I would teach myself how to pull on the plunger, just enough to get like two drops, like sometimes it wouldn't even go into the syringe you just fill the needle with it. And which is insane. And then you

Kim 50:28
try try. Okay, yeah, when you when you end this podcast, go get a syringe. Try doing even a quarter of a unit in a syringe. Try it. Like how could you possibly know what you're putting into your child? Yeah, I would do like a half a unit is the only line that you can actually see. Right and a half a unit would freaking killer. Yeah. Like that's how me

Scott Benner 50:50
too much. That's how little. Yeah, yeah, that was my experience to it. And then you would like I remember putting in the syringe that I'd press really hard on the not on her, but on the on the plunger. And I would hold it. Because I was like, there's such a little amount in there. Like, I gotta make sure it gets out like so you kind of wait, what if you actually bump it? Yeah. You just like, and then it was over? And you thought well, did that go in? And have no clue? And if it didn't, how do I with any confidence? Give her more? And I can't do that. You know, like is that like you said it'll just mean Arden was? Gosh, she was like 18 pounds when she was diagnosed. And that was still really difficult. And if I gave her food she'd eat it. And still, I don't know what you guys. So you're crazy, right? You just You just you're just functioning.

Kim 51:41
Yeah, we're we're like survival mode all the time,

Scott Benner 51:45
is the last kid did the COVID kid come out and you're just like, I don't even pay attention. This kid. It's fine. We just leave it there and it grows and it's fine. Like, you know what I'm saying? Like, give any energy left at the end of the day?

Kim 51:56
Well, listen, I just had a baby at 41. So I had to actively change my lifestyle to feel more energetic for him. How would you do that? Am I allowed to say a name of a product that I use or no? My husband bought me a peloton bike. Okay, last Christmas, I started to make some diet changes. And I actually found out that I have like borderline high calling of high cholesterol. I say borderline because I don't like to admit.

Scott Benner 52:30
So that's the thing you don't want to say out loud, Kim. Yeah, exactly.

Kim 52:35
So basically, I did some diet changes. I started working on the peloton four times a week and drinking tons of water I drink 60 ounces plus of water a day. And my I think my triglycerides went from 238 to 99. And I lost. I want to say I'm up to like 18 pounds at this point riding a bike. I'm not a huge, I'm not a huge person to begin with. But I did put on weight with this like experience of life. So I just thought I made a change. I'm like, listen, we are going to have to live a really long time. Not only because we have a child with special needs we we are obviously we don't want to we want her to outlive us. But it is scary to think about her outliving us because I don't know who's going to take care of her. So we do have to live longer than kids, the people with typically developing children. And then I had a baby a 41. So I got to live a long time for him too. So I made some changes and it started yoga, acupuncture aromatherapy, we do a lot of things, you know, I'm going to be calling a therapist soon. I don't I'm not shy about that. Like I think people should talk about mental health issues and stress issues. I started in for profit with two other moms advocating for kids in our county to get the services that they deserve that called. So we started parents helping parents coalition in Monroe County. And we advocate for children and families of Monroe County to receive early intervention services and preschool special ed services like Vivian received. However, now there is such a funding shortage. They have a tremendous provider shortage. And there's currently a waitlist of like 280 children who are supposed to be legally getting the services and they just don't have the providers to to give them the services. So I will dedicate the rest of my life for fighting for these kids, because Vivian's early intervention is the reason she's thriving today. I will always always that that fire will never go out. Every child deserves early intervention and preschool special ed services. Every single child that has a need, that needs to be fulfilled, should have fulfilled Well,

Scott Benner 54:53
that's I like, I like that you did something very locally. I think that's maybe very impactful In a way that, that, that you lose, if you try to do something on a national level or statewide level or something like that, that's great. We got

Kim 55:07
we definitely are statewide too. We do a lot of state level advocacy. And we actually were pretty, pretty strong in getting a bill called the covered lives assessment passed, and it brought money into the early intervention system. And then of course, they did a bait and switch. And it's they're using it as cost cost savings for the state instead of actually investing in rate increases for providers. So we have a long way to go and huge fights still. But what we're doing locally to help families is we're providing scholarships to kids who are not receiving services, to go to like therapy groups, at clinics around town, to give get some strategies going so they can bring that home and use that at home because they're sitting on waitlist. And then we offer purposeful programming every month, either a huge playdate with providers there, or an online seminar for parents, like the one we did last month was talking about gross motor development in your infant through preschooler. Ah,

Scott Benner 56:08
that's, that's astonishing. It's astonishing that you have time. Like if you told me I raked the leaves this week, and I'd be like, Wow, way to go, Kim. So all that is, is pretty amazing. How do you manage your Hashimotos? What does it take to keep that down?

Kim 56:24
I'm on I'm on level thyroxin. And I've been on it since I was 15. So and there was like, it's funny. Like, I had an uncle who had type one diabetes, and we both in my mom and I have Hashimotos. And he had a grandson that had type one diabetes, I still never in a million years thought type one was going to touch one of my children. Yeah. Like how what? Like, it just never crossed my mind. And then when COVID hit, because I've actually known to people already in my county who got COVID and got type one about three months later, just like the with her RSP and a few months later. So I'm talking to my husband, I'm like, I could get type one. Like, anytime, any any day like

Scott Benner 57:07
honestly, I can't get it while we were talking. Because yeah, exactly.

Kim 57:12
Exactly. Yeah. And I'm already I'm already at higher risk of type two, because I had huge babies except for Viv. Yeah, like he could, you know, so we were very, very careful, more careful than most during COVID. Because of that fear. And I wanted to get our baby vaccinated before getting it like I just wanted. And it's funny when, when our baby turned nine months old, that PTSD, like I was just like, This is how young Vivian was when she got type one, like, I can't believe it, I just can't believe it. And I remember that month, milestone, like very significantly, and like all this trauma came back to us. And luckily like my husband, I are best friends. We were together for 10 years, even before we got married. And we've been together I think 23 years at this point. He's super funny. Our kids, we just we just manage our life as a team. And not a day goes by without my older son saying, Mama, is there anything I could do to help? And I'm just I just love I love how Vivian has brought us together has brought us into this like team approach to life. And humor. Like we my husband is hilarious. And we just make a joke about everything to get us through. And we decided we can't both be stressed out at the same time. So if I'm losing it, he's got to he's got to keep it together. And vice versa. We can't lose it at the same time.

Scott Benner 58:42
It's like a fair and equitable agreement.

Kim 58:45
Yeah, let's shake on this. Yeah, no kidding. Yeah,

Scott Benner 58:48
I have a couple of questions for you. What are your What are your life goals? For Vivian? Like, what do you what do you what are you shooting for? Like, you know, like, I send my kids to school because I wanted to go to college, I want to go to college. So we get a job like that kind of stuff. But what are you thinking about?

Kim 59:07
I would love for her to go to college, I would love for her to be supported in the community, as a contributing member of the community with a job of some sort. I would love for her to live on her own. If that is in the cards. With some support. I'm we're thinking she probably would need, you know, some level of, you know, continuous supervision in some way. But really, the, the story is up to her. So I'm not going to limit her in any way in our goals or our aspirations because she's going to show us exactly what she's capable of doing. I know that her brothers are going to support her. I don't think I have to do anything to make that happen. I think it's just it's just the way it is. It's just the way it's going to be. So that does bring me comfort, but I also want them to have their own lives too. You know, so

Scott Benner 1:00:01
see your your expectation is that just life will uncover a path as you're moving forward? Yes,

Kim 1:00:07
because I think it has, it has so far, I started a Facebook group called type one and special, because there are so many parents out there that have kids that have special needs, and have type one, and it does bring on unique challenges. And I have felt that that that level of support is different than what's given in other Facebook groups. So if anybody wants to join me in that efforts, please jump on. Because I think that there are certain things that are going to come up that might not come up for, let's say, Arden, you know, like, who is going to who is going to do my pump changes, who's going to change my Dexcom, who's going to make the dosing changes, who's going to take me to the doctor, and obviously, things are getting such so much more technological and automated, and brings me hope that she would need less support than what we're giving her right now. So but I do think there's unique challenges, even even the swallowing issues, or unique challenges, I don't think I'll ever be able to give her apple juice, she's not gonna ever be able to drink eight ounces of apple juice and chug it down. Yeah, so you know, she, we do have different ways of treating her lows. Overnight lows are frosting, like different ideas like that could offer some other family some ideas and help, you know, get them through. Yeah, and even just like, even just her insulin requirements being so low, it's crazy. Like, we waited four years. So our insurance company only gives insulin pumps every four years. So we waited four years, basically to get tandem. And I couldn't wait for it. I just it was just so it's such an exciting day. And now they have technology. So tandem in itself was so exciting, because we finally started to sleep at night. Because it has the auto shut off. It was it's unbelievable how much more sleep we get now than before tandem. So that now they have this awesome app where you can dose off of her telephone. So for a girl who's like, already got so many things going on, and needs to like really work hard in her classroom and concentrate, to have a nurse walk in and be like man and managing her you know, getting her She wears a spy belt that has her phone and her pump in it. Like interrupting the class or, or even worse going down to the nurse's office. I am all about diabetes is not running her life. You need to go to her. If you're gonna give her a dose, you go to her I'm not interrupting her education because of her diabetes, she needs to be in the classroom. And then they're like, Oh, what about finger sticks and like finger sticks in the classroom. If it really bothers another kid, they can come talk to me and I'll talk to their parents about it. diabetes is part of her. And she shouldn't be treated differently because of it. And it's actually against the law to be like specifically discriminating against her or changing her educational plan because of her diabetes. So her school is tremendously supportive. Our district is tremendously supportive. So we did a lot of things different this year, versus last year, where the nurse goes in. And now she doesn't even have to be near Vivian she we put her phone at the like front of the classroom. And she doses her from the doorway that he doesn't even know that she was there. Yeah, that's great. So it's awesome. That's amazing. So for a late for a girl who doesn't really like to be stopped, interrupted, touched, and has like extreme ADHD. That is life changing. Wow. driving in a car, I can dose her on a road trip without having to climb back there unbuckle this, you know, car seat and get to her pump and get so she can eat. She loves the pets like her favorite pastime. Yeah, she can eat and drink whatever she wants. And we can dose her from afar. It's been beautiful. It's been life changing.

Scott Benner 1:04:05
Earlier you were talking about your you started a Facebook group and made me think I wish Facebook gave me some a little bit of autonomy to split my group up a little bit because I would in a second start that kind of like a subgroup inside of the group. And yeah, and let someone like you moderate it.

Kim 1:04:26
You start I started I started it today. Oh no, I just looked. I started like literally like an hour before our call because I was like, wait a minute, this is a great opportunity. So I like this advocacy bug that's in me. It's never going to stop. I can't shut it off. Yeah. So I'm like prepping for my chat with you. And I'm just like, wait a minute, this somebody is going to say, I have you know, I relate to this. I relate to the story. I relate to those fears of who is going to take care of my child. And let's get together and talk about it and please invite yourself in gotta join our group

Scott Benner 1:05:01
I want, I just I do you know what I mean? Like, there's already such a, and he might group has like, I don't know, there's like over 30,000 people in it. So there's an opportunity for you to like say, hey, look, there's a subgroup here that does this, except the Facebook just doesn't allow that. So, I wish

Kim 1:05:17
I know, I know. It might someday it might someday, it would be nice. But there's like, there's a lot of different things I talked about that can touch on people like breastfeeding, swallowing issues, intellectual disabilities, even like fine motor problems. Like if a person a kid can't use their hands or an adult can't use their hands. How do they manage diabetes? Who's going to help them? Oh, no. problems, like higher level problem solving, I think I saw on on a meme. Diabetics make like 180 More decision 80 or 180 more decisions per day than a regular person. Yeah, I get it. I understand that, and my daughter is not going to be able to make 80 decisions a day. So you know, these fears are real, and they're unique. And they touch upon a certain parent. And I want to help those parents.

Scott Benner 1:06:08
Yeah. Well, I hope that works out for you. That's amazing. of Kim. If they were up on an hour, is there anything that? May I be honest, can you have that Italian talk in you? I don't think

Kim 1:06:18
oh my god. I know. I know. And I told I told the person who was going to come over and watch my baby. I was like, listen, he said an hour, but I I'm gonna get cut off. I know, because I just talk and talk and talk. But her story, like there's just so much in the story.

Scott Benner 1:06:32
No, no, no, it was absolutely fine. Don't get me wrong. I just think that when I make a transcript for this one day, it's gonna say Chem 87%. Scott 13%. And I that's fine. But but my my reason for bringing it up was I was gonna joke and say like, is there anything I didn't ask you, but I don't think I asked you anything.

Kim 1:06:50
I know I so sorry. Oh, the only other thing I was gonna touch upon is just like how low her Basal doses are still, like even as a six year old, we still are making those point oh, two, five changes. And her carb ratio is 20 to 24. And still, like she just getting these tiny doses. So the fact that it doesn't seem odd to you, it seems it seems crazy to me because the other six year old I know, in our town is like it's just totally different dosing changes, but like, we didn't get the Omni pod. We didn't get the Omni pod because we still need those point. Oh, two fives. What changes?

Scott Benner 1:07:29
How much does she weigh?

Kim 1:07:31
She weighs 47 pounds now.

Scott Benner 1:07:34
Is the other six year old heavier than that? No, not really. No, not really another six year old, less active than Vivian.

Kim 1:07:41
Maybe maybe. And then this this whole like ADHD meds thing is is driving me nuts now because she's not eating as much and she's not finishing her meals. And that's never been a problem for her before. And it's driving me nuts. So that's just going to add a whole new little.

Scott Benner 1:07:58
The word of challenge. First adjustment should probably be like tattooed on your forearm, because you're going to be making a lot of adjustments constantly. Yeah,

Kim 1:08:07
just keep swimming. Just keep swimming.

Scott Benner 1:08:10
Okay, so when we hear a story of a lady in a bell tower, it's going to be you right, like

Kim 1:08:21
so we are so supported by our village, our friends, our family, her school, her endocrinology team, like we couldn't be living this life without all of them. Yeah, my husband and my kids, like they're just so great. And having a baby is has been so great for her as well because she is now teaching him having two older brothers that she was chasing after she was achieving milestones to catch up to them. And now she has a younger brother that she's teaching. It's just been beautiful to watch. I love being there. Mom,

Scott Benner 1:08:56
I'm amazed that your story and I appreciate you sharing it with me. That's not I mean, the truth is, I never know what anybody's gonna say. But, you know, there's some expectation when people start talking, you know, like, oh, this might go this way or I can feel the story moving in this direction, but your stuff is just so different. And your response to it is is is just laudable it's amazing it different

Kim 1:09:17
Scott, or is it absolutely insane?

Scott Benner 1:09:20
It's absolutely insane. Yes. It really is. I mean, I've while you've been speaking more than a number of times, I've looked at the like the general gist description of what I can't even say chromosome nine nine test touches. I mean, I tried Tetra Somi nine P and you start reading it you're like, this is like this must have felt like a joke when somebody tells you the first time. Yeah.

Kim 1:09:49
That's why we're like there's there's no stopping her. We are going to support her and with everything we can because that girl is good. Have she's she's already something she is spicy as all get out, she understands everything that's going on. And even though she's limited verbal, and uses her device and sign language a little bit, but even with just her body language, there is not a single person that meets her that doesn't understand every single thing she's trying to communicate to you. Um, she just gets it through, she gets it through.

Scott Benner 1:10:25
I'm trying to imagine myself being sent to this web page for my child. And the the word rare is modified with the word very in the first sentence like there's no need to modify rare with very rare is very rare, right? I mean, they're exactly exactly three words in and they're like, it's a very rare chromosomal disorder. You're like, Wait, a very rare, like, What the hell is that? Yeah, you know, oh, and

Kim 1:10:52
back back to Facebook, we did find a Facebook group of families of kids and adults with Tetra Sami 90, and have had a tremendous support from them. And we use Google Translate, because there's people from all over the world that don't speak English. But even within our group, there's such a variety of abilities and such hope. And so such support, so I'm so glad for things like Facebook, because I would have never otherwise known any other soul. You know, that has Tetris homie, nine P, there's actually another child in our state. And there's another child in Toronto. And we're actually really good friends with the family in Toronto, and have provided each other support for years now, because of this Facebook group found so

Scott Benner 1:11:36
people can make fun of Facebook all they want, but what what it has is a large number of members, and therefore the opportunity to find people. And that's that doesn't exist in another place.

Kim 1:11:47
Almost all of our work with my not for profit is through Facebook. And that's how we reach the most amount of people to influence the most amount of political figures to get change. You're

Scott Benner 1:11:59
just not there's no other social media platform or way that you could reasonably financially reach these people. And it's, you know, it's it's just underused, I mean, I use it. I think I use it pretty well. But I mean, a lot of people under use it for other stuff where it could be helpful. Yeah. So

Kim 1:12:17
yeah. And we're actually getting together with a bunch of touches 29 That that touches on IP family as we got together the last this past year in Detroit, because there's randomly some a lot of like congregated people in Michigan, and then two, before COVID, we had done our first one in Detroit. And this year, I invited people to our house, so they're coming to me, so whoever, you know, around the world, whoever wants to come and meet, we always have a wonderful time and just share stories and feel validated, and supported, which is what it's all about.

Scott Benner 1:12:51
What's the website for your organization?

Kim 1:12:54
The Facebook group is parents helping parents coalition in Monroe County Public Forum. Okay.

Scott Benner 1:12:59
Perfect. Thank you. I can't tell you I appreciate how much I appreciate this. I know it's right around the holidays and everything and and taking the time to jump on means a lot to me. So

Kim 1:13:09
I actually had to cancel her endocrinology appointment for there, Scott.

Scott Benner 1:13:14
I think he made the right decision.

Kim 1:13:16
I think I did too. And her her nurse practitioner was like, Oh, that's great. And I told the school nurses, I'm like, Do not text me or call me between 1030 and 1130. I am doing the Juicebox Podcast. Oh, can I tell you how your your podcast helped me? Oh, even more? Yeah, sure. Being more bold with insulin, for sure. Can

Scott Benner 1:13:36
I ask you a question? Could I stop you? Well, I

Speaker 4 1:13:42
don't think so. I don't think so. Sorry, Scott. Listen. Okay, one more

Kim 1:13:46
thing. One more thing. I'm being more bold with insulin, for sure. Listen to the Pro Tip series. My husband is not there yet. He's still a little apprehensive. But I am definitely more bold with insulin. And we have had an improved a one C because of it. And just just fighting for the equipment. Like I just you know, if there's equipment and technology out there, I'm gonna get it. We actually still have the G five until it almost was like not even being made anymore because I was afraid to make any changes. And then I listen your podcast. I'm like, Honey, we need the G six. Like we need to just get the G six. And so we made that change. And I really fought for the tandem pump because it's just what we need it we the day that she was qualified for it. We got it like that is so thank you for that. You're very welcome.

Scott Benner 1:14:37
It's actually as soon as I get off with you, I have to call the place where my mom is living because they are not setting up some of her services correctly. And I wish I could record that for you because you would all here a what I think is going to be a Master's class and making someone do something that they're supposed to to my my sister in law sent me a text last night and this thing this thing's not getting put into place nearly quick enough. And they said, well, there's an acclamation period for both the resident and us. And I said to my sister in law, I'm like, That's a bold statement. That doesn't mean anything. I was like, it's been it's been two weeks. What I said, Did you ask what what is that? Why? Why? What's that acclimation period for? Because the answer would have been like, I don't know, no one's ever asked a follow up question when I shuffled that at them.

Kim 1:15:27
Exactly, exactly. This is my like, not that I that not that you need advice as an advocate. But any my advice is an advocate is, let me speak to the manager. Let me speak who is above them. Let me speak who's above them. Never stop until you get the answer you want. Never stop.

Scott Benner 1:15:44
You need somebody who's motivated to do their job most of the time. Yeah,

Kim 1:15:48
MO. And most of the time, it's like it's bureaucracy, bureaucracy, bureaucracy. I can't say the word. It's hard when you're arguing with people to not get like emotional and not get rude. Like mean, I try not to do that. Because the people are on your team. They want the best for what you're trying to do. They're just limited in their resources. Right.

Scott Benner 1:16:11
You're so nice, Kim. I think people are generally lazy and don't want to do their job.

Kim 1:16:15
And that could that could be true. Yeah. But being being rude, or being aggressive is not going to get you anywhere. Right. So it's not part of being an advocate is like reading the room. Oh, yeah. And yeah, yeah. You have and, and and making them part of your team, like, empowering them? Yeah. Oh, for sure. feel like they're part of your team.

Scott Benner 1:16:36
You know, yeah, the, the desire to get the right outcome is that the top, you're not trying to be right, you're not trying to be, you know, you're not trying to win, you're just trying to get this thing to happen. Whatever it is, you don't need anyone to know that you beat them. As a matter of fact, I oftentimes let people feel like they're besting me, because it makes people feel better. It empowers them. And then suddenly, you make them feel like I was gonna say something I can't say, you make them feel like they're in control. And it was their idea. It was their idea. And you're just like a bleep, like a little, just a puddle in the corners, happy to be getting their attention. And you let them feel like they're the Master of the Universe. Like who the hell cares? Because once I hang up the phone, I'm not going to know you ever again. So yeah, exactly. I don't care how you feel or what you're, you know, if it's right or wrong, doesn't matter. As long as the thing happens. You know, that's it. Yeah, I was gonna use a euphemism earlier that I just, it's inappropriate. But I couldn't find other words for it. I just it stopped me in my tracks. I was like, I can't say that. But, but that's what I'm going to do. Now. I'm going to call this person, I am going to politely and kindly direct them to do their job and make them think it's their idea.

Kim 1:17:58
And it's and it's going to your outcome is going to be grateful. I have every faith, everything. All right. Vivian Vivian wanted me to tell you because I told her I was going to tell her story today. She wants you to know that over Christmas break. Her cousins from Hong Kong are coming and they're going to have a sleepover with her at Nana's house. That's what she wanted to tell you. I'm

Scott Benner 1:18:20
glad she messaged me with that. Why do you have cousins in Hong Kong?

Kim 1:18:24
My sister lives in Hong Kong.

Scott Benner 1:18:26
What is she special? She had to run off. Yeah,

Kim 1:18:29
she had. She had a run off to Hong Kong. She actually met her she actually met her husband here and it was kind of always in the cards if they would move there. And they did and we didn't see them for almost three years during COVID But we saw them this past July for a month and now they're coming again for Christmas because we lifted all the restrictions.

Scott Benner 1:18:47
Well tell Vivian I hope she has a great time on her sleepover. And you have a lot of fun with her cousins right?

Kim 1:18:53
Yes, that's what it's all about. Amazing. Live it live in the life she's

Scott Benner 1:18:56
doing more than I'm doing that girl that's what I'm telling you right now. She's got a more packed social calendar than I do

Kim 1:19:02
dude this this girl is lit truly living her best life Don't you worry about her

Scott Benner 1:19:06
I'm happy for I just watch out world make this podcast so you know in when I said earlier like I don't think people like sometimes people just don't work hard. And you know the if somebody comes to me and say like, how did you build the podcast this big? Or how does that reach that many people? I'm like, I work at it. Like it's it's you know, I don't get up in the morning. I don't feel like it today. Like I made this podcast recently came with a fever that I thought was going to knock me off of my chair. And there's no way you could find that episode and know that I was sick while I was making it. Because this is my kid you know

Kim 1:19:42
that you know that people need to hear these stories. Yeah, it's you live in

Scott Benner 1:19:46
you live it. It's just it's a thing I've chosen to do. So if you're going if you're an advocate, if you're gonna choose to do something, then do it. And now I'm directly talking to the woman who I'm about to talk to on the phone with my my Thank you, but it you know, it shouldn't be hard to do the basics of what you're supposed to be doing.

Kim 1:20:07
I know. And that's like, that's true to everything related discussion means like, Why? Why do I have to fight this? Hard for something so basic, but that's the issue. The most vulnerable are always thought about. Very last, always right, I think think about and it's not to get I'm not going to get political but it's both sides of the aisle. Yeah, the most vulnerable for people with disabilities, veterans in the elderly, they are always thought of last. And that's what needs to change in the world, the most vulnerable should be supported first. That's the only way our community can be successful.

Scott Benner 1:20:49
Yeah, that's hard to disagree with, that's for sure. You made me think about when I met my wife, she worked in a movie theater. And I remember being there and watching her come in, at, you know, five o'clock in the afternoon and work till two o'clock in the morning. I imagine they weren't making $4 An hour probably. And she worked at that job consistently throughout the evening. Hard, you know, like hustling around and helping people and being polite and fixing problems. And when the kids couldn't, you know, or when the other people couldn't keep up with the lines like she would jump in. And I just recently we went to see a movie. And the person who brought me the popcorn was texting while they brought it to me. Like, like, like that had their phone in their hand. And they were texting while they were holding my papa and never made eye contact with me and, and then charge me the money and left. And I don't know what happened in in 20 years. But like you don't know, just, it's a lot.

Kim 1:21:46
A lot has happened. Just just trial, a lot has happened. Anyway, one, one little documentary that people might be interested in the special needs community like worrying about what's going to happen to their child when they become adults. And when they outlive us. PBS did a wonderful documentary called The Good Life. You can find it and watch it. And it really kind of hones in on the fears that people, parents of adults with disabilities have. Because guess what, everyone's living longer now. And they are out living their parents and they do need supports for the rest of their lives. And what do those supports look like? There's never enough funding. There's never enough staffing. And safety is never enough. It's never good enough. The Good Life, The Good Life on PBS the pressures on for us to be advocating for the rest of our lives, too. And why? Why do we have to fight so hard? Yeah, it sucks. It sucks. But like, I'm never gonna stop.

Scott Benner 1:22:45
No, of course. But it's also on you now to stack up money and, and insurance policies and all this other stuff? Because Oh, yeah, yep. Yeah, I don't know how you already built

Kim 1:22:56
that. We already have a special needs trust fund set up. And I have a very good friend who just opened up a local business that is has inclusive hiring and she's she's really paving the way around here, at least to focus on the people with people with disabilities are a part of our community. It's not, it's not weird or unique or odd. To see a person with, let's say, Down syndrome, working at a coffee shop. Like she's paving the way like we do inclusive hiring is that like, Oh, yes, we hire people with disabilities. That's not what it's about. We do inclusive hiring. And we do a partner system, where a person that needs a little bit more support has a partner right next to them working in the community. And she's paving the way to make that normal. Yeah, that needs to be normalized. That's elderly people. Like these, these type of community programs need to be normalized and supported. I

Scott Benner 1:23:58
appreciate you bringing that up and making everybody aware of it. I'm gonna I'm gonna let you go now, but you're gonna cut me off though. I mean, listen,

Kim 1:24:06
you're gonna have this lady right? My friends. You gotta go yell at the lady and I gotta go. I don't even know what I'm gonna do. Well, I don't know. I'm gonna jump on the couch. I was gonna

Scott Benner 1:24:17
say you should forget peloton you wouldn't put me on a real bike. You could probably cover some real ground. I wrote down six.

Unknown Speaker 1:24:25
I can't be hit by a car. I

Kim 1:24:26
can't die, Scott, people to take care of here.

Scott Benner 1:24:30
I wrote I wrote down 60 ounces of water. I'm going to meaningfully try to drink 60 ounces of water a day and see what that's like.

Kim 1:24:36
And do oatmeal with blueberries and ground flaxseed in the mornings. That's it. Just just that one change. It fills you up. Blueberries are magical. The flaxseed reducer gives you a very good source of fiber to reduce your cholesterol and the water with that and also I also bought a like large container of like mixed nuts on salted and I keep it in the car. Are you and I snack on healthy nuts that are good for my heart instead of crap? And I keep that in the car. I'm just gonna

Scott Benner 1:25:08
end Kim Are you saying I snack on healthy nuts? Perfect No wonder your husband's got such a good sense of humor. All right, well,

Kim 1:25:22
thank you for this opportunity. I

Unknown Speaker 1:25:23
really appreciate it. Honestly, I

Kim 1:25:24
think the more people share their stories, the better our community is.

Scott Benner 1:25:28
I agree. Hold on one second for me. Okay. Well, let's thank him for coming on the show and telling us Vivian's story that was really something else. And we'll also thank the contour next gen blood glucose meter for sponsoring this episode contour next one.com forward slash juicebox. Get yourself a good accurate meter. Get yourself the contour. If you're enjoying the Juicebox Podcast, please share it with someone else who you think might also enjoy it. And don't forget to subscribe or follow in a podcast app like Apple podcasts, Spotify, Amazon music, there are so many great apps, they're completely free, just like this show. Just subscribe and follow. It really helps. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

Once there was a time when I just told people if you want a low and stable a onesie, just listen to the Juicebox Podcast. But as the years went on, and the podcast episodes grew, it became more and more difficult for people to listen to everyone. So I made the diabetes Pro Tip series. This series is with me and Jenny Smith. Jenny is a Certified diabetes Care and Education Specialist. She's also a registered and licensed dietitian and a type one herself for over 30 years and I of course, am the father of a child who was diagnosed at age two in 2006. The Pro Tip series begins at episode 210 with an episode called newly diagnosed or starting over and from they're all about MDI Pre-Bolus Singh insulin pumping, pumping and nudging variables exercise illness, injury surgeries glucagon long term health bumping and nudging how to explain type one to your family. Postpartum honeymoon transitioning all about insulin Temp Basal. These are all different episodes, setting your Basal insulin, fat and protein pregnancy, the glycemic index and load and so much more like female hormones and weight loss. Head now to juicebox podcast.com. Go up in the menu at the top and click on diabetes pro tip. Or if you're in the private Facebook group, there's a list of these episodes right in the feature tab. Find out how I helped keep my daughter's a one C between five two and six two for the last 10 years without diet restrictions juicebox podcast.com Start listening today. It's absolutely free.

#966 CSI Diabetes

Haley is a crime scene investigator who has type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 966 of the Juicebox Podcast.

Hawley is an adult living with type one diabetes, and she's a crime scene investigator. It's pretty cool. We're gonna find out all about it in just a moment. While you're listening. Don't forget not to remember not to forget. That doesn't make any sense. While you're listening. Please remember that 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, or becoming bold with insulin. If you like comfortable things like bedsheets, towels and clothing, go to cozy earth.com. If you see something you like, use the offer code juice box at checkout to save 40% You and I could be drinking the same drink every morning I drink ag one and you could to drink ag one.com forward slash juice box. And for your newly diagnosed folks. Don't forget to check out the bold beginning series. It's available at juicebox podcast.com. You can also find a list the feature tab of the private Facebook group. And of course, in every audio app under the sun. That's where you can find the podcast everywhere you get audio

this episode of The Juicebox Podcast is sponsored by Omni pod Omni pod makes the Omni pod five and the Omni pod dash find out more Get started today at Omni pod.com forward slash juice box you want to learn about the Omnipod five or the Omnipod dash, my site has it all. You can even ask to go on a test drive with the AMI pod on the pod.com forward slash juicebox. When you support the Juicebox Podcast by clicking on the advertisers links, you are helping to keep the show free and plentiful. I am certainly not asking you to buy something that you don't want. But if you're going to buy something, or use the device from one of the advertisers, getting your purchases set up through my links is incredibly helpful. So if you have the desire or the need, please consider using Juicebox Podcast links to make your purchases.

Hawley 2:27
So my name is Hayley, and I am a type one diabetic of about four and a half years now. I don't remember the exact diagnosis say no, it was July or August of 2018. And I am a crime scene investigator. I've been doing that for about as long I think I was in my job for about two weeks when I was diagnosed. How old are you now? All right, I'm 31 now, so I was 26 at diagnosis.

Scott Benner 2:54
So you're on because I was like Does anybody have a cool job? You're like I do. So I want to find out about that. But first I want to understand about being diagnosed right as the new job starts. So did that make it more difficult to figure out? Because your life? Yeah, kind of twisted up I imagine.

Hawley 3:15
For sure. So I was a 911 dispatcher before I was a crime scene investigator. And I started getting sick. During that job, I worked 12 hour shifts. And I was drinking about a gallon of water or more per 12 hour shift and of course, having to pee every five seconds. So I knew something was wrong. And I had gone to a doctor in about March of 2018 through some bloodwork, because I thought it was my thyroid due to some family history with the thyroid. And that doctor kind of blew me off. And he didn't run all the tests. He didn't run a n a one C tests. He really just told me it was probably sleep apnea that I was so tired and sent me on my way. So I continue to get a lot sicker. I lost a lot of weight. And when I started my new job, I was having trouble walking down the halls without being out of breath. I was holding the walls to walk. And they were like we're too concerned to call you out to crime scene. So we're not going to do that until you figure out what's going on. So it kind of hindered my job in the very beginning. Mostly because the doctors weren't listening to me,

Scott Benner 4:20
Haley, there's no way that people weren't in a room with the door closed going, hey, who hired this one? Yeah, she's she's holding the walls. I mean, okay, so because of family history, you were thinking thyroid,

Hawley 4:39
correct? Well, that's every female on my mom's side of the family has a thyroid issue.

Scott Benner 4:44
Okay. And the doctor, I love this, by the way, whatever is trendy, is what they is what they go with. You have sleep apnea. Do you Has anyone else been through? Hell? Yeah, I'm talking to everybody now but whose dentist had suddenly become like a shaman because I used to go to the dentist. They were like, here, let me fix your teeth. And now they say things like, Oh, you're this looks swollen? And are you doing this enough? I'm like, Are you? Are you branching out or something? I was like, just, you know, teeth, please. But my kids, what is it your people have taken out of their throat? Oh my god. Haley your tonsils? Yes. Every time Arden goes to the to the dentist, do you have to have trouble breathing? And she's like, No. Hi. So have your tonsils are very big. And she goes, Yeah, I can breathe fine. It just, it's constantly like that. So I love that the doctor was like, you know what's trendy right now? Sleep apnea. Because cuz, you know, Haley at 27 You probably had sleep apnea.

Hawley 5:52
Right? With no family history. Yeah, no other symptoms.

Scott Benner 5:56
And by the way, I see a photo of you and your little idea of your thing here. You seem like you're a, like a healthy weight. And you know what I mean? Like, there's just nothing about you that says probably can't breathe when she lays down. But okay, anyway, you're stumbling around at work, having just gotten this job. How do you get that? How do you go from being a dispatcher to that? Like, what's the LEAP there?

Hawley 6:19
Yeah. So you know, when I was in college, I knew I wanted to work in criminal justice got a bachelor's in sociology, because my college didn't have a major in criminal justice. And I interned for a police department and a private security firm, during my four years in my undergrad. And I just needed a foot in the door to kind of figure out where I wanted to go in my career. And thankfully, the agency I'd interned for, they were hiring dispatchers. So I was like, You know what, my mom's done it. So I'm going to ask her if she thinks I can do it. She said, Yes. And so I went for it. I did that for four years, while getting a master's online. And my initial goal had been the Behavioral Science Unit of the FBI, which is why I went and got that master's degree. And in the process of being a dispatcher, I learned, you know, that you, you don't get to know the end, you have to hang up the phone and pick up the next call, and you never get to hear what happened. And you don't get to be involved, as much, at least in any kind of investigative work. And that's what I wanted to do. I wanted to get out in the field, I wanted to help people on the investigation side. So I just started applying to all the crime scene jobs I could apply to. And without any experience in that field, it was very difficult to get one. And so I was very blessed to get the job that I do have. And I have attempted the FBI. I do think that the diabetes diagnosis does hinder that, though, because they told me I needed more education and experience. But I don't want a PhD.

Scott Benner 7:49
I'm gonna say something out loud here. I know that people from the Secret Service, listen, so would you want to work there?

Hawley 7:57
I have actually applied to them as well. And that one did not work out either. But I just figured maybe the federal was not my way to go. Since it wasn't working out for me.

Scott Benner 8:08
You think it really has something to do with the diabetes?

Hawley 8:11
I don't think that the Secret Service did I know that the FBI has been sued for something like that before? And it just seemed very broad of you just need more education and experience and like, okay, maybe experience you know, I'm a supervisor now. So I'm starting to get some new experience. But education wise, you don't even need a master's to be federal. You just need a bachelor's?

Scott Benner 8:34
How far did you get through that secret service? Like, isn't that initial, like months and months of background checks and stuff like that? Did you go through that?

Hawley 8:43
Yeah, so I got to just before like the really extensive background checks, so I did the polygraph. I did the initial interviews and stuff. And you know, a three hour polygraph is not easy for somebody who's never done one. So as the most nervous I've ever been in my entire life, even though I've literally done nothing to fail one.

Scott Benner 9:04
So, three, three continuous hours.

Hawley 9:08
Yeah, I mean, there's short breaks right in between, but I was there for three hours. Yeah.

Scott Benner 9:13
How long did you do that?

Hawley 9:15
That Yeah, so the polygraph itself was three hours. And the process itself took maybe three months before I got the email saying no,

Scott Benner 9:24
was and I'm sorry, I was just trying to figure out that was like recently in the last year, so Oh,

Hawley 9:30
gotcha. Gotcha. Yeah. So that was, I believe that was the end of last year. Okay. Because it was before I got promoted to supervisor so I was before February at least,

Scott Benner 9:41
you sound very motivated to like you. I mean, like there's, you already had to go through so much just to make the first leap. Like you said it was difficult to get the job without any experience. I mean, are you happy where you are now or do you think you'll keep pushing to try to broaden?

Hawley 9:59
Yeah, I mean, I'm I'm super happy right now, like I said, I was promoted in February. And it's, it's a difficult job to kind of move around in sometimes, because people who get into the crime scene field don't leave typically. So you have to wait for somebody to either leave or retire, you know, and then they've only been there a few years, and it might be 15 years before you can become a supervisor without leaving that agency. And again, it's hard to other agencies to, but it's it's definitely rewarding work. And the agency where I work at isn't like, one of those big, big cities where there's a homicide every night. So I, the one thing that it does lack is kind of, you know, I need to have that training so that when it does happen, I'm prepared for those things. Yeah. But I've kind of taken a step back, you know, with these knows from the federal agencies and trying to reevaluate what I what I do want for the future.

Scott Benner 10:52
That's cool. I mean, I thought it would be easy to move out, because I figured from what I've seen on television, a serial killer shows up like halfway through the season and kills everybody in the department. So it should be super easy for you to move up, I don't they kidnap the girl? Martin has the glasses, and then a lot of stuff has to happen.

Hawley 11:11
Right? And I think in a bigger agency, maybe it is, you know, because there's different, like groups, you're not just a crime scene tech, you are specialized in blood stain or in shooting reconstruction, whereas I have to have a broad knowledge of everything.

Scott Benner 11:27
Right. I at some point, I guess, here diabetes, but there was there was like, you know, for I don't know how long ago it was, there's a lot made that, you know, technology had moved forward. And you can tell like, there was all this, like, you could tell what's happening, by the way, blood splatters and everything. And now more recently, like I'm hearing that that is like flawed science, like, how do you keep up with what's current? And do they ever go backwards? Like, I mean, could you use a technology to, I don't know, find out somebody did something. And then five years later learn the technology is no good. Do they go back and look at that case again? Or how does that all that work?

Hawley 12:05
Yeah, so we have training at least once a year at this like big conference where they go over all the new laws in the state and all that so that we are aware of what is changing in at least in our state. And then of course, the different disciplines like bloodstain and stuff, you would have to go to that specific training, and learn from the people who are experts in that field. And you know, it is changing, and it changes quickly, you look at gunshot residue, and even polygraphs that used to be a big thing on the stand. And nowadays, they're not accepted in courtrooms at all, because of how flawed that they can be gunshot residue, if you're in the room, it's on you. Whether you were involved in it or not. So sometimes that can really be a hindrance on the case unless you're trying to prove the person's that they weren't in the room and you're trying to prove that they were basically, as you're going back to look at cases that's more of like a detective type thing versus crime scene. But I would assume that they do. I mean, you definitely don't want to put innocent people away. Yeah.

Scott Benner 13:09
So you're telling me if I'm in a room, and someone shoots a nine millimeter in here, and you're in the room across the hall and someone shoots a 38 mer, can you tell that we were in different rooms.

Hawley 13:23
So it would definitely depend on like how close certain guns for the size of the gun will determine like how far that gunshot residue is going to go. So you could be standing far enough away that it wouldn't touch you. But because it floats in the air, kind of like you see dust in the air, it can attach to you even when you'd never touch that firearm.

Scott Benner 13:44
What can you tell the nine millimeter from the 38?

Hawley 13:48
I actually don't know if you could I think that that would definitely depend if I don't know a lot about guns, why we have like firearms experts at my police department. But it would depend a lot on the different is there different gunshot powder in those bullets in the ammo? Do they use different ones? Or do they use the same? Because if they use different ones, you could potentially tell that

Scott Benner 14:09
that's interesting. Okay, so let me ask you about the diabetes first. How were you? I have a lot of questions about your job. So how were you? I mean, you you were stumbling around at work. And Did someone say hey, please don't use heroin at the police department or like, like who grabbed you? It was like, Haley, you need help. Did you figure it out on your own? Or?

Hawley 14:29
Yeah, well, I was continually going to doctors. So March was that first doctor? He they called left a voicemail said you're fine. Everything's fine, blah, blah. And I was like, Okay, well, I guess I would have just been tired and I wasn't really experiencing all the symptoms at that point. By June, is when I started to drop a lot of weight. And so I went to actually the gynecologist, and I stepped on the scale and I was 20 pounds less than I had been two weeks prior. And they're like, oh, Oh, no that like that's a healthy weight for your age. And that was like, Yeah, but I'm not trying to lose weight. And that's a lot. So I'm a little concerned. Thankfully, it was the same type of regional clinic. So he was able to see the bloodwork that the doctor had previously done, and saw that he didn't do everything. He didn't do a glucose panel, he didn't even do all the thyroid tests. So it was actually a doctor who's not even specialized to figure it out who ran my glucose panel and found my agency was too high. But then I had problems getting into see an endocrinologist. They referred me to one that didn't take my insurance. And by the time I got one that took my insurance, it was like a two, three month wait to get into that doctor. Oh my god. So yeah, and at this point, I'm 50 pounds less i My potassium was dangerously low. And I end up getting hospitalized to get the potassium injected back into me and get my insulin or my blood sugar down. Because I wasn't on insulin. I was just on Metformin at that point. So

Scott Benner 16:05
I sort of know what you look like 5050 pounds.

Hawley 16:09
I looked like a skeleton.

Unknown Speaker 16:11
Oh my god. Yeah.

Hawley 16:12
That's super sick. I think it was 119 pounds, maybe a little less. When I got my official diagnosis. Did

Scott Benner 16:21
you think you were dying?

Hawley 16:23
I did. I mean, especially because I couldn't get a doctor to help me. Like all these doctors. Were like, okay, yeah, something's wrong. But we can't tell you exactly what it is. It might be diabetes. So here's some Metformin, which made me nauseous and I couldn't eat at all I would order a kid's meal at a restaurant and eat half of it.

Scott Benner 16:43
And, and you're also in a fog, right? Like mentally, right? So you're not even able to kind of advocate for yourself the way you would want to. And you end the weird thing about being in a fog is you don't know that. Like that's, that's the crazy part. Like you just be like, Oh, I went to the doctor, they said this and you kind of go along with it. Because you're you're at half speed and you're obviously you're not even your bloods that oxygenating even like you're you're lightheaded walking around and like you're you're you're really in trouble. So is it just dumb luck that you made it to a doctor in time?

My daughter Arden has been wearing an omni pod since she was four years old. And she is now 19. That is every day wearing an omni pod for the last 15 years. I think what we love most about Omni pod is that it doesn't have any tubing. But I don't know is that the thing you love most about it? You don't have to take it off to swim or bave you can leave it on for activity and exercise. It's small. I don't eat I mean, it's so easy to put on right to fill it and to put it on. It's just it takes us no time at all. Yeah, I guess it's hard to figure out what my favorite thing about Omni pod is. I guess I'll just say that my daughter loves it. It's easy, and it's worked for her. For so many years. It's just such a friend at all this Omni pod.com forward slash juice box you can check your coverage there for your insurance. Or take a test drive right? Would you like a free trial of the Omni pod? You can do that there as well. Then you can just get started. Omni pod.com forward slash juice box now you have a decision to make. Do you want the Omni pod dash, which is an insulin pump? Where you make all the decisions? Or do you want the Omni pod five now the Omnipod five is the first and only tubeless automated insulin delivery system to integrate with the Dexcom G six. And it's available for people with type one diabetes ages two years and older. It features smarter just technology. And it's going to help you to protect against highs and lows both day and night. That's an algorithm based system making decisions about insulin given it and taking it away. It's pretty damn cool. On the pod.com forward slash juicebox links in the show notes links at juicebox podcast.com. When you use those links, you're supporting the production of the podcast and helping to keep it free and plentiful. If you have type two or pre diabetes, that type two diabetes Pro Tip series from the Juicebox Podcast is exactly what you're looking for. Do you have a friend or a family member who is struggling to understand their type two and how to manage it? This series is for them seven episodes to get you on track and up to speed. Episode 860 series intro 864 guilt and shame episode 869 medical team 874 fuelling plan, Episode 880 diabetes technology episode 85 GLP ones metformin and insulin and in Episode 889 We talk about movement. This episode is with me and Jenny Smith. Of course you know Jenny is a certified diabetes Care and Education Specialist. She's a registered and licensed dietitian. And Jenny has had type one diabetes for over 30 years. Too many people don't understand their type two diabetes. And this series aims to fix that. Share it with a friend, or get started today.

Hawley 20:21
So, you know, you saying that you can advocate for yourself is a great thing that leads into basically the friends around me and my co workers, or at least my previous co workers, because I was brand new at my, my current job. But my previous co workers, they were so concerned, they called, is actually a cardiologist, but he was a reserve police officer. So he worked with the agency a lot. And because I had such an accelerated heart rate and trouble breathing when walking, and my potassium being low, he was able to see me for those reasons. And he got me into an endocrinologist the very next week, like he called, and made sure that I got an appointment immediately. Wow. Did you ever go to the ER, I did go to the ER. So I saw him I did the crazy bloodwork panel that test everything. And then I saw the endocrinologist next week. But the bloodwork wasn't in yet. So she drew a little bit of her own blood. And then I went four hours away for a work training a photography training. While I was away at that training this doctor who I currently see because she's amazing, called me four times at one in the morning, unblocked her personal phone number because I wouldn't answer the blocked number. Because I don't ever answer block numbers. Just to tell me my potassium was so low that I needed to go get it rechecked because I was at risk for a heart attack. So me being me, and having class the next day for a brand new job that paid $800 for me to go to this class. It didn't go to the ER right away. I went to class. Later in the week, I was noticing because I was testing my blood sugar at this point. But I was only on Metformin. But I was noticing that I was eating salads for lunch and jumping up into the four or five hundreds. Whereas usually I was resting in the three hundreds waiting for that bloodwork to come in. Yeah. So I ended up going to the ER that week to for the potassium. But while I was there, they also got my blood sugar down into the one hundreds. And then I was diagnosed the very next week after that class.

Scott Benner 22:23
What did it feel like to get your blood sugar down?

Hawley 22:25
Oh, my gosh, it was amazing. And you know, I think that the potassium had the biggest effect on me. Because once that it's four bags of calcium for hours, one bag an hour, because it burns without the saline going in as well. So it takes an hour to finish one bag. Between that and the insulin. I felt like a brand new person. As soon as it was done. I was like, this is exactly what was wrong with me. Because I feel like myself again.

Scott Benner 22:52
Wow, that's amazing. And for people listening, why are you not hiring Haley, when she applies for a job? You listen to what she does, she's like, I'm still going to work. Like her heart was shutting off. And she's like, listen, they paid $800 for me to go to this conference. I'm gonna go to the conference like you're hard worker. Seriously.

Hawley 23:09
I was so nervous. And of course, my boss was like, there's other photography classes. We don't care. Just need to take care of yourself.

Scott Benner 23:18
No, at this point, they were planning on firing you already. They're like, something's really wrong with this girl like we we've made a mistake. Let's just get her through the probation period. We can boot her I think they were probably people were probably just relieved. I would imagine once it was all over that you had an answer?

Hawley 23:32
Yeah. 100% When I started the application process for my job, it took four months to get hired. So when I started the application process, I wasn't experiencing symptoms yet. Yeah. So it was a shock to everyone. And you know, I got the typical, I don't know if your listeners or anybody else has gotten this, but just the Oh, I'm so glad it wasn't worse, because people were thinking, Oh, well, maybe it's cancer and I literally would turn to them Go pull. It is worse though, because it's for life. And it's a very hard diagnosis.

Scott Benner 24:03
Listen, those there's a two different thoughts there because you're right, but what they were thinking was there's no they all thought you were dead.

Hawley 24:09
Right? They thought I was gonna die. Yeah, they were so worried. That was the their initial reaction.

Scott Benner 24:14
Yeah, yeah, the people around you saw the situation you were in and like, oh, that girl's not gonna make it. And yeah, and then they're busy going like, Oh, I'm so glad it's not something that makes your head fall off. And you're like, Yeah, but guess what? Yeah. So what's going on over here? Now, I have tubes and pumps and glucose monitors and test strips. And yeah, I take that point. So I mean, your friends came through for you obviously when the medical community kind of couldn't you were lucky that you worked where you worked, so people knew doctors and and that kind of stuff is just really lucky. No, I'm with all the thyroid on your mom's side. No type one.

Hawley 24:57
So there's no type one on her side and unfortunately Because of my biological father's side not being involved in my life, I have a great stepdad than my dad since I was two. We didn't know that medical side and diabetes runs on the biological father's side. Oh, I learned that afterwards. Yeah.

Scott Benner 25:14
That would have been nice to know sooner. Yes. Well, that's crazy. So should you by the way is your thyroid, okay.

Hawley 25:25
I have hash tomatoes. So, but my thyroid is, it never falls out of range. So they don't necessarily like prescribe me medication for it. I am testing out a low dosage though, because I do still have some symptoms, even though I'm still within range. And my mom has graves, which is the opposite. Pretty much, she said that she has to run a little higher to feel normal. And that that could be hereditary to run a little bit higher than what they want you to run.

Scott Benner 25:53
There's an excellent thyroid series inside the podcast, if you ever want to check it out, I think, yeah, from my perspective, if you have symptoms you should be using like Synthroid or something, you know, one of those medications, you should you shouldn't, I guess what I'm saying is you shouldn't take medication based on the number you should take it based on how you feel.

Hawley 26:14
Yeah. And I think that that's why this doctor gave me the month of or two, I'm sorry, it's two months of to test it out and see, because I was going to a previous doctor, the first doctor who diagnosed me I went to her until my insurance dropped that location, and I couldn't go there anymore. And then went to this other doctor who was just very data driven. If the numbers didn't show it, they didn't do it. They are the ones that diagnosed me with the Hashimotos. But you know, they didn't really do anything about it. They just said, Okay, well, you have it. Here you go. So soon as my insurance switched, I immediately jumped back ship to the good doctor.

Scott Benner 26:49
Yeah, you could see, you could see symptoms over a TSH of like, 2.1 or so. And it would be reasonable to medicate them. Anyway, there's great episodes, I'll share them with you when we're done. So. Okay, so. So when you go from the 911 job, which I want to ask you about just a little bit, is that hard? Is that hard on you like on your soul? Is that a tough job?

Hawley 27:13
I would say that anything in this field? Yes, mental health is a big thing. And I'm thankful that the agency that I work for, they believe in that and they actually pay for a therapist office that we can go to, that doesn't tell them who's going to see them, they just pay the bill. And then we can go whenever we need for whatever we want. But it's it's hard, because you're listening to people, you know, number one wise, you're listening to people in the worst moments, they need help. And you know, it could be something really serious. Or maybe it doesn't seem mysterious to you, but it is to them. It's the worst day of their life. Yeah. And like I said before, you're hanging up the phone afterwards, and you're just picking up the next one. For an example. My mom was a 911 dispatcher for 10 years, and she was on the phone during the Fort Hood, active shooter. And that still makes it hard for her to be in crowds to this day.

Scott Benner 28:09
I can't imagine and then like you said that it's just over. And it's still happening. And you know, it's still happening. But you're on to the next one. And the next one's like I locked myself out of my house, you're like, Oh, my God, well, you have no idea what's happening three blocks away. Right? Yeah. Is it harder to listen to somebody? In the aftermath of something? Or is it? Is it more difficult to talk to somebody while something's happening to them? Like as far as getting? You know what I mean? Like getting their information? How hard it is for you to hear? Like that kind of stuff?

Hawley 28:43
Yeah, definitely during, you know, sometimes your emotions are running higher, you're yelling, you're crying, you're kind of incoherent sometimes. And you know that certain agencies and certain programs require certain questions to be asked. And so I know one of the programs we were using, required me to ask the address twice, and that person after the first time they give it to you, they might not be listening anymore, because they just need help. And they're like, you have my address, send someone or you know, they don't actually want to talk to you or maybe they can't talk to you. Maybe there's somebody in the room with them that can't know that they're on my one. So definitely during the situation, it's always harder.

Scott Benner 29:23
Yeah. Interesting that you were diagnosed with type one after you left that job. So how many recollections do you have of 911 calls from people with type one?

Hawley 29:34
You know, I don't know if I ever necessarily took no one calls that Right, right. They never said that they had it. But now that I'm working in crime scenes, I will go to, you know, death scenes, and I'll see packages of syringes and insulin and stuff like that. And I'm like, Whoa, I didn't realize you know, that this was so big before I had diabetes. I didn't The difference between type one type two, I didn't know there was like seven different kinds of it, what any of it meant until the week after I was diagnosed, and I was trying to learn it all in a hurry, right?

Scott Benner 30:11
Okay, so I want to understand your job. You, I assume go to an office. And what happens like crimes committed or something happens, someone comes and gets you and takes you to a scene or says this is where you have to go, like walk me through the whole process.

Hawley 30:28
Yeah, so I work four days a week, 10 hour shifts, I work from 6am to 4pm. And I kind of choose those hours, we just have to work 40 In a week, they're not big on whether that's eight hour or 10 hour shifts. But the majority of my job, unlike the TV is a desk job. With lots of spreadsheets on Excel, I'm in charge of the evidence room as well. And taking that evidence to and from crime labs and stuff like that. So that takes up the majority of my day. If a crime scene does occur, and they need us, then they will call our we have work phones, we're on call, there's only two of us. So I'm on call every other day, they'll call us we have work vehicles that we can take home. And so we'll take that vehicle, we have an hour to respond to the scene. And once we get to the scene, it is our job to document that scene in different ways. So we take photos, we take videos, we will draw and sketch the scene, collect evidence, take notes, all kinds of things that when we go to court, we can recreate that scene if needed. And then also, of course, collect the evidence that could solve the crime.

Scott Benner 31:32
So the way you collect the data, the visuals especially is about putting you in a situation where you can recollect it later based on what you saw it there almost notes for yourself so that you can say when I got there, this was happening. These were at this angle, like that kind of stuff. It's it's for you. So they the your expertise can then be drawn upon in a in a hearing or some sort of

Hawley 31:53
Yeah, and even I mean with this was a hand drawn sketch, you can take those measurements with PVC pipe and white butcher paper and create a 3d model of that crime scene and walk a jury through it. And so it's a big, those are big things for courtrooms, which don't happen for years after it. And so you're trying to remember what you did 234 years ago, I still haven't gone to court for my first every fatality accident, which was in 2018. But you will eventually. And I may unless they play out, you know, I might go to court for that. I think it's scheduled for March of next year right now. So if they call if they subpoena me to that courtroom, I need to remember what I did. And so I always I have my photos and like notes and sketches and all that it saved in three different places at my work theater.

Scott Benner 32:41
And so it's it's, it's so it's about collecting the data to have it but it's also the way you collect it is about how it kind of jogs your memory when you look back at it again. So that's why there's a process like that, there's what I'm imagining, like there's Yeah,

Hawley 32:56
has to be like an actual representation of the scene, you know, because if you take your photo in a way that distorts it, then you can be seen as trying to make the crime scene into what you wanted it to be pulling in that bias, like, oh, well, they set it to suicide. So it's definitely a suicide, making the evidence show that it is. But you can't do that, you know, and that's why you kind of have to follow steps, you take photos first, because you can't touch anything until those photos are done. You can't touch anything until your sketches done. Once those are done, then you can start collecting evidence. So there's definitely a process to make sure that it gets done correctly.

Scott Benner 33:35
How was my question? I just had a question. Oh, evidence evidence handling. So I'm assuming then a lot of it's about packaging it correctly, keeping it clean, safe away from being touched by other stuff? And then do you log it all and then take it to a handling room? And then during the day? Also, it's about moving it around in a way that protects it? And is that a lot of your job? Right? Like a lot of it is, is making sure that nothing is touched or messed with?

Hawley 34:06
Right? Yeah, so we go to like a bunch of classes on different packaging, certain pieces of evidence can't be packaged in plastic versus paper. We have boxes specifically for firearms. And there's a lot of rules and policies on how what can be packaged which way. And so, you know, those are something that me and my partner have to be experts in because we have to also correct every officer putting in evidence for the scenes that we do not go to if they're doing it right or wrong, you know, it is our job to take those from the officer and put those in the evidence room, but they have to be put in there correctly. And then we're the only ones with the keys to get to that evidence to get in those evidence rooms. And so we are responsible. If one of those items goes missing like it is on us. We could get fired. We could get charged with a crime. Our chief could get fired and there's a lot of liability that comes with an evidence room.

Scott Benner 34:59
Do you do car X? It's as well,

Hawley 35:01
I do, we stopped doing them for a little bit because we have an accident reconstruction team. And they're trained in forensic photography and all that as well. And so there's only two of us. And there's like six of them or so they were handling the photos without us that I don't know, if anybody else has noticed how short staffed everyone is lately, but we also are short staffed. So we have taken on doing accidents again,

Scott Benner 35:26
I there's a sandwich place in the town where I live, and they've hired a man who is I'm just gonna guess his age 175 years old. And, and he, he makes sandwiches at a speed that is not conducive to eating. And I did I know one of the guys there and I was like, What's up and he goes, we can't get me to work. Like, still. You people gotta go back to work. It's over now. Like, go please go make my sandwich. But that's interesting. So what about fires? Do you do fires and arson? Or is that a different branch of what you do?

Hawley 36:03
So most of the time, our sins are really handled by the fire marshals because they have the fire and the peace officer licensed. They're trained in both police and fire. But if the arson causes a homicide, or you know, they tried to burn up the evidence, because they they killed somebody, then we would definitely go to that scene and assist with the collection of evidence. And all of that

Scott Benner 36:26
sounds like a interesting job. Do you find it to be interesting? Or does it even does everything get repetitive after a while?

Hawley 36:32
Yeah, I mean, I definitely find it interesting. Growing up, I was always the one watching the serial killer documentaries. In college, I was doing projects on serial killers and grossing my teachers out. It's always something that's fascinated me, I would watch Forensic Files till I fell asleep at night, which is pretty much the only accurate TV show when it comes to crime scenes. So it was always something that I've been interested in in, which is why I took that jump from, you know, dispatching to this job. But now that I do it, obviously, it's interesting, but it's also super stressful and a lot of work. I don't watch Forensic Files and all that anymore. I've never even seen the new Jeffrey Dahmer thing on Netflix.

Scott Benner 37:13
So breaking your heart that you didn't see it.

Hawley 37:16
You know, I'm just not even interested to watch it. Because I do this all day, almost every single day, especially now that I'm a supervisor. I feel like I'm constantly checking my emails and having that work phone attached to my hip.

Scott Benner 37:29
Well, how does your diabetes impact your work then? So how do you manage? Do you have a pump or MDI or what do you do?

Hawley 37:36
Yeah, so I recently got the pump and CGM back in January of 2021. I could not afford it at first, because my insurance does not cover medical devices until you meet your deductible. And it was going to cost me 3000. I think 3300 total for the pump up front. But I was experiencing the dawn phenomenon. So I was going to sleep on a normal blood sugar in the 90s, maybe, and waking up to 50 to 80 every morning. And so I was like I need this pump, I need something to where I don't have to wake up every few hours to give myself insulin. And so actually did a fundraiser. And my police department helped with that as well. They donated $500 to it. And I raised $5,000 within two weeks. And so I was able to get the pump kit the Dexcom and put some money away for the rest of the year when it came to insulin and then also help somebody else out as well. And it's been life changing. I mean before the Dexcom in pump. And before listening, actually to your CGM episode, my agency was about a 9.1. On three months of the pump, I was down to 6.8. That's terrific. It was magic, but like literally life changing. So you know, at work, obviously, before that I had to injections and I had to check my blood sugar right pricking my finger. And sometimes you're on a crime scene for like seven hours. And if you don't have food or snacks, you know, that can be really difficult. And I have great coworkers who I can text and I have before on a seven hour crime scene in June in the middle of Texas outside 102 degrees and said, Hey, can you please bring me some food because my blood sugar is gonna go low and I have nothing and they will drop what they're doing and do that for me. I've taught them you know, what the glucagon is? And that I have it in my drawers and have things in my crime scene van that can help me on a scene. So it's definitely being prepared for the worst before it happens.

Scott Benner 39:45
Yeah, you don't want to scene on top of a scene.

Hawley 39:47
Right? Exactly. They're not going to be very happy with me.

Scott Benner 39:51
That happens the crime scene investigator passed out Yes. Her blood sugar got low. Well, that's that's really I mean going back to the You know, the fundraiser that's, I mean, that's how much it meant to you're like, I can't pay for this. I know I need it. I'm going to try to see if I can find another way you you should, like, do a thing where you prove like boyfriends are cheating or something like that you could probably charge for that. I probably, yeah, I sit there submarket for that. Were you, you just kind of come into the house you look around, you tell him what to look for? Do you find yourself being? Does the job make you more suspicious?

Hawley 40:29
100%. I feel like I do not press anything. You know, I get out of my car and I look around I have certain security measures in my apartment. Like I have a bar that goes under my door. So you can't kick it in. I don't like answer phone calls or answer the door to people? I don't know. Because I do see those terrible things happen?

Scott Benner 40:50
Yeah. Do you think it's a reasonable concern? Or do you think it's just it's just kind of, I don't know, multiplied? Because you've seen it more than once? Yeah,

Hawley 41:01
I think some of it is reasonable. I think some of it also comes from being a female. And, you know, when you're female who lives alone, I live in a city that isn't always I don't live in the city, I work but the city I live in, not always the nicest city. And so some of that is like reasonable and some of it is just from the job. You carry

Scott Benner 41:18
gun. You live in Texas, you must carry a gun, right?

Hawley 41:22
I have one and I actually don't carry it. I kind of just use it as home security. But I did have to call the cops last Friday, because this guy was knocking on my door. And he kept touching the doorknob trying to see if it was unlocked. So I started carrying it while I take my dog out to the bathroom. Just just because I don't know where that guy came from or who he is. But I haven't seen him again. Thankfully. Oh, that's

Scott Benner 41:46
That's it? Yeah. Did that make your blood sugar go up? By the way?

Hawley 41:51
I did. Yeah, I did. I was so stressed out.

Scott Benner 41:54
Oh, that would stress me out, too. I mean, I know you're saying, you know, I'm alone. And I'm a woman. But I'm, if I'm, I feel the same way. I'd be like, Why are we trying to open the door? Although it's so. Oh, that's crazy. How? How long have you lived alone?

Hawley 42:14
Since last October.

Scott Benner 42:16
Okay. So you've you've done both ways. You've been by yourself. You've been in school, you've lived with a person you've been by yourself, again, kind of going back and forth?

Hawley 42:25
Correct? Yes. So I was married, recently divorced. And when I was married, is when I got on the pump. And when I was diagnosed, and so I had two incomes. And so that has been an adjustment. And also, you know, not having someone there. In case I do drop really low. So you know, on the Dexcom app, I have five people watching my numbers, and some of those people work nights, so that they can look at my numbers while I'm sleeping.

Scott Benner 42:50
That's excellent. That's really great. I like the way you've got that all covered. I don't want to know your personal business. But now I'm dying to know if you figured something out about your husband. Because of your job. You're like, wait a minute, I'm seeing what's happening here. But we'll skip over that because it's not part of what we're talking about. Short answer is yes. Oh, my God. So this so there's something about being deductive and paying attention to things that lead you to figure out something in your personal life?

Hawley 43:18
Yeah, I mean, you know, my brain works in different ways. You know, when I see things, I want to investigate it further. So, you know, I might not be suspicious at first, but if I see something that makes me suspicious, I'm going to investigate it.

Scott Benner 43:32
Mm hmm. Interesting. Wow. That'll scare guys off. It'll scare the wrong guys. Or the it'll scare the wrong guys off so good. Yeah. You should tell that story on the date.

Hawley 43:47
Right, see if they jump up and run or not,

Scott Benner 43:49
don't even bother he second phone. I'm gonna know. Why are boys terrible? Haley.

Hawley 43:56
You know, there's crazy girls out there too. So I know their wedding in general was, it's crazy.

Scott Benner 44:03
I'll tell you that. What's that? Like with diabetes? Now? Have you dove back in? Have you tried to go out with somebody?

Hawley 44:09
Yes, I recently started dating, probably literally last month of the month before. And I was really nervous about that. I was nervous to bring it up to pull the pump out. You know, I tried to wear my CGM in places where you can see it. Just because, you know, I've been out at grocery stores and had kids come up and show me theirs. And so I'm like, you know, it's a great thing. It's a community trying to find Blauw diabetics in the wild, right. So I tried to make it known that I was worried about that on a day, you know, do I say it right away? And so far, it's been just like, Oh, that's cool. Like, oh, what's that? Like, you know, that must be hard. And I'm like, was kind of the opposite of what I expected it to be. But it's still something that I'm like, curious to see how it goes. Yeah.

Scott Benner 44:55
Well, I mean, we saw what the FBI said when you told them so that wouldn't make me All right, so you need more experience where you gotta go.

Hawley 45:04
You gotta get out of here. And you're just well, you can't be in the military, if you're a type one. So I mean, there's a lot of jobs that you get disqualified from for it.

Scott Benner 45:12
Yeah. Well, I mean, it's one of those things like, it's, it sucks, like, yeah, I understand. I think I understand everybody's perspective. You don't I mean, like, you need to work and it's not your fault, you have type one. And at the same time, if we were, I don't know, flying jets, I wouldn't want your blood sugar getting low. So it's a lot there to consider. Tough to bring up to people you're dating, because you're not sure what they're gonna say people have been generally accepting. I always tell people, like, I've had a lot of, like interviews where people talk about finding like, you know, mates and the right people. And it just, it doesn't seem to be an issue when you find the right person. And yeah, that sucks. Because, I mean, I get it, I get it. I mean, like, I get why it would suck. And it's something I worry about for my daughter, too. You know,

Hawley 46:00
I mean, I'm definitely going to keep somebody up in the middle of the night. Are you further it's pump alarms, or my work phone's going off to go to a crime scene. So you might not get any sleep.

Scott Benner 46:08
Well, oh, Arden's been home from school for like a week, like today. And I told her last night, I was like I have, I've slept so terribly the last three nights. Because, you know, that adjustment, like she left her schedule, and she's coming into a different schedule, and it throws your blood sugar off, and you're in the middle of kind of like, getting it back together again. And I was like, God, I've been up like two nights in a row, because your blood sugar has gotten high or low. And but when she was in school, she was in such a pattern like that. It worked great. And it is, I mean, it that it does impact the people who are with you. So I mean, I think there's no doubt about it. Like I wouldn't be, you know, I wouldn't be upset if my daughter heard me say this, but my life's not what it would have been if she didn't have diabetes, just like hers is, you know, I mean, in different ways, obviously. But still, there's impacts everywhere. Yeah. So you said you use a pump, but you didn't say which one? Are you on an algorithm? Are you using the pump on your own?

Hawley 47:09
Yeah, I'm using the tandem T slim. So I have the control IQ nine with the Dexcom G six. It just happened to be a little bit cheaper than the Omnipod for me, and I was on the Medtronic CGM. And I just wasn't very happy with it. And so I didn't want to get that pump specifically. And the tandem just worked out. Well, I like I said, been on it for a little What is it a year and a half now? Yeah, almost years. Do you like the control IQ? I do like it. I I'm a little bad when it comes to putting in the carbs before I eat them. So I don't always let the pump do the job that it's supposed to do. And my you know, my endocrinologist definitely tells me Hey, I needed to put these carbs in so I can accurately read your numbers and like You're right. I'm so sorry.

Scott Benner 47:57
So what what happens? So you know, you're going to eat, and then you don't like so you're not Pre-Bolus thing is what you're saying?

Hawley 48:04
Sometimes Yeah, like if I'm out in a restaurant with friends, I will sometimes just kind of almost forget like, Oh, hey, by the way, you're diabetic you need to do this and, and be a little bit lazy and not do it right away. And then when it starts going up, I'm like, Oh crap, and then you just

Scott Benner 48:19
throw it out. Or you do tell it you ate or do you just throw in insulin at that point? Yeah, I

Hawley 48:24
still put in the carbs. Like, okay, I know I ate this many carbs. So let me go ahead and put those in. But I always check to see if it gave me anything because, you know, I was trying to do conversion, like the corrections and stuff. So I don't want to overdo it. Because I've done that too. Yeah, that's not fun, obviously.

Scott Benner 48:42
Yeah, so your blood sugar. You don't tell it you're eating. I'm never gonna get rid of this cold. Hold on a second. This is how I'm gonna live for the rest of my life. I think we're like seven weeks into being sick at my house. It's my wife's the worst. She's definitely like, I don't want to say this like this. But I mean, if anybody's interested in me, I'm probably going to be available soon. Like she's, she's been. She's been really sick. And it just it got everybody. i We she got COVID thought it was gone. It rebounded. She gave it to me and my son. We struggled with it. I got bronchitis afterwards. So did my wife. I think my son had it not as bad. And then we finally got antibiotics for the bronchitis. It kicked it out of me but not out of her. And now I think she's got a third different illness in like seven weeks. Oh my goodness. I told her today when I actually I told her when I came in here. I said, if I come out and you're not at a doctor's office, I'm going to take you like a small child, but I like to go back to the doctor. So in these scenarios, if you don't remember the Bolus for your food, your blood sugar starts going up. Control IQ sees that starts giving you insulin and then later you're like, oh hell and then you put in the carbs. Do you get low later after that happens? Or does that depend on how aggressive you are?

Hawley 49:59
Yeah. depends on me, I would say, and sometimes I am too aggressive, you know, with it. And I've noticed that and tried to cut back on doing that, because, you know, I was having a lot of lows, this, this last three months in between my endocrinologist appointments, and I did start going to the gym more. And I dropped really low in the gym a lot, too. So she adjusted my numbers in general. But, you know, I know that I am part of the problem, like I need to be putting in the carbs before I eat them, you know, I needed to be making make sure that I'm taking that time to do it correctly. Just read those numbers, you know, obviously, so that I feel better. But she knows whether or not the numbers that she's changing in the pump are doing their job.

Scott Benner 50:41
So let me ask you a question based on your job, your profession, and how well you were able to sniff out that terrible husband of yours and other things. Why is that? You? Don't do it?

Hawley 50:52
No, I haven't found the answer to that yet. Honestly, I feel like I am just so lazy sometimes with it. It's like, I know I need to do it. I know that I'll feel bad if I don't do it. But there's times where I just don't want to do it. And I think that, you know, it being like four years in that I need to focus on doing it better. Now, you know, I don't want those complications in the future. And you know, I need to get into good habits. So even though my agency was I think it was like a 6.6 this last time. I'm not necessarily doing the things I need to do to have anyone see that's under seven. Yeah. Do have any kids. I do not know, just very once,

Scott Benner 51:33
just for do you think you will ever want to?

Hawley 51:36
I don't. It was something I didn't want before I was diabetic either. I have my niece and my nephew for my brother. And I'm like, That's good enough. But then a dog and a cat. They're great.

Scott Benner 51:47
Done. I'd tell you it's very expensive. That's the Yeah, that's the thing I know about it, for sure. But I was just asking to see if you were like if your focus was split on other people or something like that. But so you know, she just kind of you're kind of qualifying it by saying like, lazy but it Do you think it's do you think it's possible that it's just still very new and you don't want to have diabetes?

Hawley 52:13
I think that that could definitely be a big factor. When I was first diagnosed, the way the doctor said it to me, which is very blunt in your face, like, Hey, you're you're type one diabetic, it's going to be for the rest of your life. Let's start going into the details. And I was in a tunnel at that point. I don't know what she said to me after she said those words. And at the time, my ex husband was in the room with me, thankfully, because he did catch the other things that she was saying. And I did go through, you know, a depression based on that diagnosis where I stopped taking care of myself in other ways, you know, I didn't shower as much and stuff like that. And I did end up seeing, you know, a therapist and taking the steps to take care of myself better. So I could say that's probably part of it, it's probably still part of that healing process of that diagnosis and the grief stages you go through.

Scott Benner 53:02
That would be my expectation based on listening to other people talk about their lives, that it's just, there's a small part of you, that's just like I want I want this not to exist. And if maybe around meals, you can make it not exist for a few minutes. I don't know, maybe that's satisfying somehow. I don't know, obviously, I'm just talking based on anecdotal information I hear from other people, I would tell you that there'd be a lot less for you to think about, if you did those things, which I assume you know, so. Right. Yeah. Like you could really free up a lot of the other parts of your life, which would be nice. And you'll move on. It sounds to me like you're in a journey situation, and you're moving in the right direction just kind of takes time to go through it.

Hawley 53:46
Yeah, I think that, you know, 26 years of my life, I wasn't really sick, ever. I didn't really have to go to the doctor or focus on what I was eating, not necessarily that I was eating really bad things, but like I didn't have to count carbs or do anything like that. Actually how you talked about bronchitis a little bit ago, I had bronchitis the January before my diagnosis. And I had never had bronchitis before. So you know, I started out really sick that year. And of course, then it just, I got even sicker and got my diagnosis. And so in that year was just rough in general. Yeah.

Scott Benner 54:21
How long did that stick with you the illness

Hawley 54:23
had bronchitis. Well, I had a sinus infection again, I went to an urgent care and a doctor was like, Oh, I don't think it's a sinus infection. And I caught them every year. So I knew that it wasn't science fiction, but she didn't give me antibiotics. She gave me a cough suppressant. So it held that infection in there and it turned into bronchitis. So I would say it was a good six weeks or more that I was sick with bronchitis.

Scott Benner 54:47
Oh, no kidding. That's sucks. Yeah. And it's just did it make the diabetes more difficult for you?

Hawley 54:54
So it came before the diagnosis and honestly, I was interested to know you know, they say that trauma to the body. you mentally and physically can help with like, can almost call it not cause it, obviously, but lead to your diagnosis. And so I didn't know if the bronchitis, you know, kind of helped speed up that process or not?

Scott Benner 55:14
Yeah, well, I mean, any kind of stress on the body, right, that brings your immune system into play might have been one of the things that that stressed things to the point where, you know, your, your immune system is like, Oh, I'm confused. I'll go get her beta cells now. Sucks. It, the whole thing sucks. I'm wondering about you just, you're an interesting age, right? Like you're in your early 30s. But you've been more recently diagnosed, you've gone through a number of different life changes. And you're just starting to get it's interesting to talk to you right now. Because it's, you're not a kid, right? Like, it's not happening to you, like you're aware of how to live, you've been through some good things and some bad things in your life. It's not that you're you seem calm about it. Do you consider that you're at peace, that you have diabetes? And that you're just working it out? Or do you think it's still something you're coming to grips with?

Hawley 56:10
I would say like, 90% of the time, I'm at peace with it. But I feel like I still have those moments where I kind of like, woe is me, I'm going to feel bad about myself certain things, I'm still learning. And so I think as I learn those things, and as I get better, with using the pump, and being able to understand it more, that helps me be more at peace with it to just the knowledge on how to do better with it.

Scott Benner 56:35
Yeah. Well, that's good. I mean, it's, I think it's just a process. It takes a lot of time has community been valuable for you online at all.

Hawley 56:42
It's been huge for me, I've actually met a few like diabetics through Tik Tok, and met them in person, when being She's a kid and her mom takes care of her. And then her mom's fiance is also type one. And she has me on her Dexcom, too. So this mom has three people with alarms going off constantly. And her daughter has been such an inspiration to me, because I'll post tech talks of me changing my Dexcom and changing my insulin pump cartridge, just kind of put the knowledge out there on how to do it. She tells me that like her daughter was too scared to do it before seeing my videos. And now she does it on her own. And so then I'm like, Oh, well, I need to do better. Like, you know, I've got little little kids watching me, I need to be better about it. And then there's also like a group of ladies here that we meet once a month and get lunch and we talk about things and I listen to your podcasts. And like I said the CGM one was big for me, especially when I traveled eight hours to see my brother driving. Podcasts are like the best way to make that trip. Things that are huge. It is

Scott Benner 57:49
a really interesting medium, it lends itself to this incredibly well. Somebody asked me the other day about like, you know, could you make a video series about this? And I was like, I gotta be honest with you. I was like, I don't think it'll work. I think that there's something about being able to listen while you're doing other things and be able to have more long form conversations that get to stuff and I don't know, I just I think this works the best Hey, dude, tick tock. People bounce in real life or No, not in real life. They don't bounce. Like when you're all standing around, they don't just like, like, pull on their shirts, or like you don't I mean,

Hawley 58:26
right? Transit? No.

Scott Benner 58:30
They don't suddenly show up in a completely different outfit.

Hawley 58:35
Might be a little weird.

Scott Benner 58:37
It's amazing. But it's very cool that you to use any kind of like, any kind of popular way of contacting people. Like, you know, I've heard people say, I mean, we've had people in our house to show them how to change their insulin pump. And that's, it's nice, but it's one person at a time, right? Like, if you do your work on Tiktok and 500 people see it, then that's 500 people who got it doesn't look so tough. And you know, and then they can can feel better about it. It's really, it's wonderful. Is there anything? I'm not asking you about your job that I should be? I want to make sure I'm not getting too far away from something important.

Hawley 59:13
You know, I don't think so. I think that, you know, we touched some of the big things, which was the mental health side of it. And you know, that the physical, I'm lifting heavy things every now and then. And anybody knows with that has diabetes, that workouts can really affect your blood sugar's too. So just in general, I mean, it's a constant watch and just look at think about this technology, right, having the CGM and having this right on my phone that I can be in the middle of the evidence room and area where I don't have the best cell phone service and still get a notification if something's going on with my blood sugar.

Scott Benner 59:49
Yeah, no, it's the technology is huge. I was talking to our friend the other day, like we drove home together so often goes to school pretty far away from our house and it's She's a fashion student. And so Arden traveled with most of her clothing. And, you know, she's got this break for her largest break of the years right now. She's like, not going to be at school for a couple of months. And she's like, I want to bring my stuff home. And I was like, Well, how are you gonna do that? She's like, you're gonna drive here, and then drive me back. And I was like, okay, so long drive. So like, I leave my house, one o'clock on a Thursday. And I think at like three in the morning, stopped at a hotel, and slept like five hours, then got up and drove two more hours and picked it up, right. And so we get our stuff packed in the car, middle of the afternoon, we leave more of a straight shot home, we can share the driving a little bit. So it doesn't take quite as long. But we get home at like four in the morning. So I think I drove something like, I don't know, 28 or 30 hours in like a 37 hour timeframe. And anyway, there was a lot of time to talk on the way home. And I remember just saying to her, I don't know how we would have done this. So well. Like I don't know how you would have had the experience you had without all this technology. You know what I mean? Like, like, you still would have gone to college. But I don't know how you would have been 10 weeks, in a place where the quality of the food's not great. All of a sudden, like you go from the food you're eating to like lesser quality food makes it more difficult to Bolus for has using more insulin has you eating more late at night, you're walking around more suddenly, you're in a city by yourself. Like, I mean, there was a time she got she did this Pre-Bolus for a meal. And she got pretty low on the CGM. And I told the story somewhere in the podcast, but I was able to with apps that I have on my phone, see where she was physically. So I knew she was at a place where there was food and that she was eating. Like I said, I saw that she was in the cafeteria, that was an app, I saw another app that saw when the when the insulin went in and how much she put in. And I could see the projection of where it thought she was going to be in five minutes. And I don't know what I would have like, otherwise, she just would have been somewhere in her blood sugar would have been 50. Right? I wouldn't have known that. And she wouldn't have known it, she would have given herself insulin and gone to eat and just all would have happened. It's just the I mean, I know everybody can afford it. Right? It's not, like you talked about earlier, like everybody's insurance doesn't cover it. But I don't know, like diabetes went from what it was to what it is now in like 15 years. It was such a it's such a leap over the last 15 years. And it's just, I don't know, it's it's changing people's lives. Art, and she would not have had the same experience without this stuff.

Hawley 1:02:57
Yeah, I mean, I think it's really important for me, you know, even if I couldn't really afford the both of them, you know, I honestly have to get rid of the poem. Because with the with the Dexcom. You know, if I'm on a crime scene, my most recent one was actually homicide and I was on a team for 1415 hours, I have to be able to see my numbers and I might not be able to take my gloves off and go prick my finger in the corner, necessarily. I mean, obviously I have understanding coworkers, I probably could, but you just never know what situation you're going to be in how long you're going to be on these scenes. So that the Dexcom is so important, especially because I can just look on my phone real quick.

Scott Benner 1:03:36
Yeah, Haley, I think what's more likely is that what would happen is what used to happen to people which is you would keep your blood sugar higher so that you didn't go or you would just go and go and go until you felt dizzy and they eat way too much food and drive your blood sugar back up again. And having a one C and the sevens or eights because you can't see anything. And I the point you made I mean I'd make the same point I don't want my daughter not to have a pump but if you had to give one of them back it's a reasonable decision to make like you know I believe it's kind of a false choice but for some people but but still the points there is that seeing your blood sugar and the speed and the direction and that's the that's the first step right and then after that, I mean look at it that things talking to your pump your pumps giving you insulin, but you don't Bolus for a meal like freaking amazing, you know?

Hawley 1:04:29
Yeah, nowadays if you do the update on tandem you can give yourself insulin from your phone. You don't even have to pull your pump out of your pocket anymore. Which I think for somebody like me is definitely a necessity

Scott Benner 1:04:40
yeah no of course yeah, that's really wonderful. I don't know i were i really appreciated you coming on and talking about this Thank you. It was really great if you to take the time you listen but not that much right?

Hawley 1:04:52
Yeah, I do. I try to listen on my drives. But I choose like the specific episodes that definitely Direct into, like what I need,

Scott Benner 1:05:02
you're more of like a management listener? Or do you like the community stuff too?

Hawley 1:05:06
Yeah, I would say more of the management. You know, I haven't really dived in, I think, to the community episodes enough yet, so I'll definitely have to check those out, and especially the thyroid ones.

Scott Benner 1:05:16
Are you in the Facebook group?

Hawley 1:05:17
I am Yes.

Scott Benner 1:05:19
Up in the feature tab, there's lists of all the series, The defining thyroid series is, is I think it's great because I don't think people talk about it enough. But there's an episode within it, Episode 413. It's called thyroid disease explained with the doctor that actually manages the people in my family's thyroid. And she's just terrific. And then the Pro Tip series. And I and there's also an algorithm Have you ever listened to? I'm finding one Hold on, I'm actually looking episode 662 is called control IQ ninja. You might, you might like that.

Hawley 1:05:55
Yeah, definitely. Have to check that one out. For sure.

Scott Benner 1:05:58
I appreciate you doing this very much. And being so honest, like you were just like, you know, nobody comes on the podcast about diabetes expecting to be like, Yeah, I just got divorced. So it's nice of you to to be so honest. While you're talking to I appreciate it. Yeah,

Hawley 1:06:14
it's been fun.

Scott Benner 1:06:15
Thank you. Hold on one second for me. Okay. Okay. All right. Hey, huge thanks to Haley for coming on the show and sharing her story with us. And of course, we want to thank Omni pod for sponsoring this episode of The Juicebox Podcast. Find out more about the AMI pod five for the Omni pod dash at Omni pod.com forward slash juicebox. And when you're ready to buy use that same link to get started or to ask for a test drive. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes 40,000 members. It's an incredible place, you will learn something there or help somebody Juicebox Podcast type one diabetes doesn't matter what kind of diabetes you have. You're welcome there. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. A diabetes diagnosis comes with a lot of new terminology. And that's why I've created the defining diabetes series. These are short episodes, where Jenny Smith and I go over all of the terms that you're going to hear living with diabetes, and some of them that you might not hear every day, from the very simple Bolus up to feed on the floor. Don't know the difference between hypo and hyper. We'll explain it to you. These are short episodes. They are not boring. They're fun, and they're informative. It's not just us reading to you out of the dictionary, we take the time to chat about all of these different words. Maybe you don't know what a coup small respiration is, you will when you're done. Ever heard of glycemic index and load haven't doesn't matter. You will know after you listen to the defining diabetes series. Now, how do you find it, you go to juicebox podcast.com up top to the menu and click on defining diabetes. You'll be able to listen right there in your browser. Or you'll see the full list of the episodes and be able to go into an audio app like Apple podcasts or Spotify and listen to them at your pace. Download them into your phone and listen when you can. The defining diabetes series is made up of 51 short episodes. That will fast forward your knowledge of diabetes terminology