Scott Benner 8/4/23 Scott Benner 8/4/23

#969 Saturday Night

Danielle is an RN who was diagnosed with type 1 diabetes in her own hospital.

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Danielle 0:00
Hello friends, and welcome to episode 969 of the Juicebox Podcast.

Today I'll be speaking with Danielle she's a nurse who hosted her very own hospital. She was actually scared of carbs, and once had to give herself glucagon in a hotel room while on a work trip. Today she uses control IQ after doing MDI for a number of years. And this is our conversation. 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. Don't forget to support the sponsors if you want to Dexcom use my link and on the pod my link us met my link etc. and so on G Bo Capo pen use my link links in the show notes links at juicebox podcast.com. When you click on those links, you are in fact supporting the show. You'll get a free years supply of vitamin D and five free travel packs when you get your first order of ag one with my link drink ag one.com forward slash juicebox

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My name is Danielle. And I have type one diabetes will La da it's just kind of morphed into solely type one I guess you would say. And I got diagnosed at 29 While working as a nurse at the hospital

29 Your nurse Lada still.

So I when I was originally diagnosed, I was diagnosed with type two misdiagnosed, then working at the hospital, I was rounding on patients with one of my endocrinologist, let him know. And he said you're not type two. And I was like, No, I'm pretty sure I am just got diagnosed with it. And he's like, who in your family has type two diabetes and I had no family history. I was not obese, I had a healthy lifestyle. And he's like you're not type two. And so he's like, well check, check your blood sugar. Like I was only checking it like maybe once twice a day at that time. And he had me check my blood sugar with one of the hospital meters and it was in the five hundreds I don't remember the exact number. And I was fasting. I only had bought coffee yet that day. And he was like, Absolutely not. You are not rounding on my patients. You need insulin right now. So he took me in the Med Room and pulled out insulin and gave it to me, right there in the middle of the hospital middle of my day. And then he pulled me from the floor.

See now I thought we weren't gonna get any more unique diagnosis stories, but that was very unique. So yeah, he just he just assumed taking a brief history and seeing the blood sugar. He's like, this is not Yeah, type two.

Yeah, yeah, absolutely. And I had worked with him for for some time. And I think that he, he knew enough about me to just kind of go off of that gut instinct. And he injected me with three units right there. And I was like, sit down. I'm gonna check on you in an hour.

Did your blood sugar move? refused? Wait, hold on, you refuse the insulin?

No, I took the insulin. He wanted me to go to the ER I refuse to be at the ER at my own hospital. And he knew I was pretty strong willed. So he let me sit in the nurse's station.

You know, I don't I've heard that statement from nurses so many times. I think I kind of understand it, but it's been spoken to me a dozen times. I won't go to the ER in my own hospital. What Yeah, what's the vibe behind that?

I think there is this, you know, mentality of a lot of nurses that like we're the caregivers. We don't need the care. We we help fix people And I didn't want to ever be seen by my peers as sick, Ill weak, I would have rather went to a less. I would call like, just less skilled hospital. I've been treated by strangers, then treated by my peers and people I knew it because I'm not a great patient. I know too much to be a good patient.

That's, that's interesting. Okay, I appreciate you speaking more about that for me, because I just that phrase has come up so many times. Okay, so, how long ago was this? How old are you now? Yes.

So I'm 36. Now.

So seven years ago,

seven years? Yeah.

Do you remember? When he came back an hour from then what was next?

Oh, yeah, my blood sugar like barely moved at all. It was, I want to say low for hundreds, maybe high three hundreds. I mean, didn't really touch it. But I mean, nothing. Three units of insulin is not touching a blood sugar of 500. That has been 500 for God knows how long. My agency at the time was? 15.7. Yeah. And so I had lost I actually went to the doctor originally for my original type two diagnosis. Thinking I told my, my PCP that I thought I had a spinal tumor. I was paying all night long, I would get these horrendous leg cramps. But I would only get them at night when I lay down. And I only really acknowledged how much I needed to go to the bathroom at night. And so I thought it was some sort of tumor benign tumor in my spine. Pressing on a nerve making me pee and hurting my leg.

Now you jumped over a lot of other operating options there when you got Yeah, yeah, you sound like I did. I did really did. Like Kelly's, like, what's wrong with my arm hurts. I have arm cancer. It's obviously arm cancer and dying. And this is it and well, so did they put you in the hospital? I mean, if the three units only moved you a little bit, then you need to be like titrated down or

he did not he because I was pretty adamant. And I was like, I'll walk out. I'll go ama I said, give me orders. I will go home and I will get my blood sugar down. And he thankfully trusted me to do so. And I did. He was like I want I want text updates every hour then of your blood sugar.

Are you married?

I am married. Yeah,

this is he does he does He looks tired. Are you?

Oh, yeah, I'm sure he's he's mentally and physically exhausted with me

every day. What's wrong? Yeah, I don't know if that's Danielle. Everything's fine.

It really is. He? Well, and I didn't tell anybody my diagnosis for a long time. Okay. Like I originally, my husband was the only one that knew I didn't tell anyone in my family. I didn't tell. I wanted to have it under control before it answered any questions? Okay, so my mom who's also in the medical industry, I just, I knew that she would lose her mind. If she found out that I had a diabetes. She or be especially like an insulin dependent diabetes, she would just freak out and not know anything but need to know everything. And so I wanted to just have a rhythm developed and have something to wear. I could say, Hey, I got diagnosed with this. But I have it under control. Here's what I did.

How long did that go on for?

It? It took probably about four months before I let anyone in my family know, or friends or anybody at work. I just didn't want to answer questions to something I didn't have the answers to,

you know, do you think I should put the ads here so that parents who just heard that an adult child didn't tell their family for four months that they had diabetes so they can absorb that and cry and all the things like he imagined like the mom of a 12 year old right now going, Wait a minute, they're gonna leave the house and then something like this is gonna happen to them. They're not going to tell me like, like, people are freaking out. I'm freaking out a little bit. I'm like, oh my god, like I like you don't I mean, do you have kids? I'm sorry.

Oh, yeah, I do.

I have an eight year old son. Okay, so you know how any reasonably intelligent parent is looking at their child and thinking, well, they're doing like 10 things that they shouldn't be doing that I don't know about. I can't possibly know what all of them are. But one of them shouldn't be withholding a major illness.

Oh, yeah, I know. They were not happy.

Oh, no, no, I I'm dying to hear the story of when you told your mom four months later that you had diabetes. But yeah, but so I understand the idea that you thought like, let me get it in hand. Right? And then I can tell people and comfort them at the same time with Don't worry, I've got it all figured out already. Yeah, yeah, any part of you just not want to tell people you have diabetes, like at work or anything like that,

you know, a handful of girls knew at work because they were in the nurse's station with me when I got pulled from the floor and sat at the station. And they were kind of my close knit work group, we kind of planned our schedules together and things like that. So that was okay, because they were also a resource, not that floor nurses are very educated and diabetes, to begin with, you know a lot about the disease process, and you know, how to give insulin according to just standard sliding scale orders, but you don't know the, the effects or the signs of low blood sugar, you all you know, is what the meter tells you when you check.

Okay. And that's it? Well, you know, I'll stop you for one second, then we'll get right back to it just made me think of this morning, as I was getting ready to talk to you. I was doing my social media. And I know, you're like, oh, Scott, you should have a social media person. I know I should. But I'm like, I'm trying to go through it. And a message on Instagram, from a doctor, you know, person puts up a post to tell everybody, I don't know how diabetes is going. And she's thanking some people at the end, she says, and the Juicebox Podcast for giving me all of the information I did not get in medical school. And it's just, I mean, I know it's true. And I understand why, like I understand, like, going to nursing school will take 20 years if they were going to dig into everything that you are going to see. But it's still shocking to hear that, you know, a handful of nurses and in a hospital only really know, this is the number give this much insulin where the doctors child will get diagnosed, and a podcast would end up being more valuable than a medical school degree. Like that stuff is, it seems crazy. You know, it's just the

power of shared information. I mean, every I truly believe that every diagnosis and every diabetic is so unique in I mean, we have a lot of common similarities. But yet, the whole diagnosis and the whole treatment and how you approach things, it's just it's unique to every individual. And it's really hard to get that sort of unique approach. In any sort of hospital or care setting or even an office setting.

You would have no way of knowing this, but my my podcast is is slotted as a medicine podcast also on this is ridiculous. Nobody cares about this, but Apple podcasts, there's Apple podcasts, health, which is the kind of the parent category, then there's a subcategory. That's medicine. I'm in medicine, right. So I'm in health, and then I'm in medicine, and my my podcast charts pretty consistently in the top 20, all year long in the medicine category, but it's surrounded by nursing podcasts, which are incredibly popular, where nurses get on and talk to other nurses about things. They're going to see how they handle stuff. It just made me think of what you just said, like it works for diabetes, but it also, I mean, there's five really popular nursing podcasts. So it must it must work great in that scenario as well. Anyway, yeah, absolutely. So anyway, I'm sorry. So you're so here you are, you're at home, do you actually figure it out? Because you have lotto right, so it's,

I do so the very next day, so I essentially manage kind of every few hours checking and I don't really come below 300 And I feel somewhat I feel the low blood sugar effects in the three hundreds as well. So I knew just I mean, as long as I felt okay, I stayed really hydrated, and I fasted I wasn't eating because I had an appointment the next day with my endocrinologist and that's where he gave me love Amir and so I started on lab Amir I think I started at like 30 or 40 units a day, it was a pretty, pretty significant amount. And just the blanket kind of sliding scale of your blood sugars this take this much insulin, none of it was a you know carb ratio. We didn't talk about carb ratios or you know correction factor. All it was was mealtime sliding scale insulin.

And that's just seven years ago.

Yeah, seven years ago. That's

interesting. And what was that was that because I mean because that's a I don't like using terms like a lot but That was more basil than I expected you to say. Like, I'm looking at it. Yeah, I'm looking at a picture of you. And if this is a reasonable representation of you, you're not your slight person, right?

Yeah, yeah. Yeah. And I think part of it was, again, like some of his orders are based off of a one CS. And in those sorts of things. So the higher somebody is a one C was the more love Amir or Basal insulin that he would initially administer. And so I, he wanted me to take some time off of work, and just like focus on it. And he's like, if you're feeling really low, then you know, beat and reduce your Basal. If you are not coming down, then you know, give yourself your your sliding scale. And so I did that for a few days in it worked. Well, I would say I got myself into an average of two hundreds, still feeling really low all of the time. But I was happy that it wasn't I felt out of the danger zone, essentially, out of just walking DKA.

Did you think you had type two?

Well, so it had been about three or four months between my diagnosis of type two to La da, but then prior to type my type two diagnosis, I would say it was probably three another three to four months that I had a spinal tumor in my mind.

So over six months, your blood sugar's elevated, and you're treating it by drinking coffee and nothing else. Is that kind of what you were doing back then?

Oh, yeah, I would drink a ton of coffee, water. And then But prior to Well, when I first got diagnosed with type two, also, I was given Metformin. Okay. So that that would help.

Obviously, it wasn't. So Metformin doesn't work for type one diabetes, amazing. By itself, by the way, some people do take Metformin, I do still take it, I do still take it. Does it help with persistence? It does,

because I follow well, and we can get into how I got to keto diet. I feel like I started a keto diet before I knew what keto was or that being a thing. I just quit eating carbs. But I it definitely helps because I have a higher fat intake. And so I think it helps curb some of that insulin resistance from that increased fat diet.

Gotcha. Okay, so, I mean, I have the luxury of having your what I'm going to call the most complete note anyone's ever sent me about being on the potty. But But I want to, I want to start picking through everything. So this was not a comfortable time for you this sliding scale is happening. Are you scared most of the time, or, like,

at this point, at this point, I wasn't very scared, because I didn't know. I mean, I knew very brittle diabetics, either from highs or lows or extreme insulin sensitivity from just working in the hospital or working in a long term care setting. But I never really viewed myself as sensitive to insulin because I was injecting a lot of it and it wasn't doing much at the time. A lot of that was probably diet as well. And again, just kind of the blanket orders and the mismanagement when initially diagnosed. But no, I was just really determined to like, have to hundreds be my highs, or even low three hundreds be my highs post meal. And my goal was to get my my lows back to the one hundreds, somewhere in the one hundreds. I just wanted to see what the 100 So knowing that, like, I can't, I knew that I can't rush this down. Like I wasn't going to feel good internally. If I went from having an average blood sugar of five hundreds, 406 Hundreds, for months, just back down to 80 to 120. It wasn't going to

feel well. You were feeling low on the two hundreds at that point. Oh, yeah.

Yeah. Yeah.

Can you talk a little bit about like, I feel like working in a hospital. Like I've talked to nurses, not just on the podcast, and they'll say that, you know, everyone I meet with diabetes, generally speaking, is not great at taking care of their diabetes. They're high all the time or they're high and then low and then that yeah, I use the word brittle because I don't know because it means unstable. Yeah. And, and, and then you get this feeling that that's what diabetes is like, almost like I have a friend who's a police officer and Every one that he encounters during his day

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I think initially, yes. I think that that was definitely a perceived thought. Prior to me having it right. Once I got diagnosed, it was like, Oh, my, this is not easy. It's like why does this feel so bad? And I thought, you know, like, I'm smart. I'm a nurse's this isn't a big deal. And I was actually you know, as sad as this is I was actually like it's somewhat relieved that it was type one and not type two. I had this like notion in my head of like, if it's type two, I did something wrong. Like I ate terribly. Like I didn't take care of myself. No one else has it. That means I did I didn't do something right for me. And then I thought to myself, if it's type one, then it wasn't my fault. It's out of my control. And I actually like found comfort in having a type one diagnosis as odd as that sounds.

I don't think I actually think that it's common because yeah, I just got done recording with a type two the other day and I try my hardest to put type two episodes into the show but it's difficult to get them to step forward and one To do it, and overall the vibe is, I don't want people to think I did this. And, yeah, it's just it's a, I think it's just a very human way of thinking about it. Like, you just don't want people to look at you and think, oh, look what you did to yourself. And I understand what you're saying I understand it. So, okay. What happens? Like, do you go back to work at some point? Or how do you get through?

Yeah, I, I had just, I just had a couple of days off, I took PTO, and no big deal was feeling better. I would say by like, the end of my first week, I was in the one and two hundreds, and I was pretty bold, I mean, I, I was not checking my blood sugar as often as I do now, because they still kind of just had this mindset of pre meal, checking it because that's what I knew. I wasn't doing a ton of like post meal checks. So as long as I was back down to to a somewhat decent number, I would say, near the 150s pre meal, I felt completely comfortable, still giving myself as much insulin as I needed, according to my sliding scale. And so I felt like I had it, you know, relatively under control. I got to a place where I wasn't seeing a lot of two hundreds at all, it was very, very rare. In my morning, kind of wake up range was typically 90s. And so it felt like my love Amir was was working well as as well. And I actually slowly HAD, Once my blood sugar and a onesie started to come down. I actually started decreasing my love Amir and I have always kind of managed my own insulin outside of my sliding scale. When it comes to my basil. I kind of always dictated after my initial orders from my doctor, I kind of dictated it after that if my blood sugar was higher at bedtime, I would give myself a little bit more basil. If it was lower, I would I would decrease the amount of units in in was really flexible, right from the beginning, because I felt like he he's not seeing this every day. He's not seeing me every day. I will know when it's working. And when it's not.

That's, and that's a real benefit of your job. Yeah, because so many people spend years not making what they consider, like obvious like they see it right in front of them. They're like, I use this much. And then this happens. I bet you a little more, a little less would do this. And then they don't have the nerve to make the leap because they don't want to override the doctor. But you were just like, I'll change that. No problem. That's yeah,

I think there's probably a little love hate in that when it comes to my physician's opinion. But

yeah, I was pretty beginning. Living with you. They don't they don't say exactly, you know, so.

I mean, he knew what he was getting into when I walked out of the hospital that day.

I would love to talk to him. I wish I had. Yeah, that'd be an interesting, just a 10 minute conversation. Because all of that was so different. Honestly. But, but interesting. Okay. Well, so in your note, you talk about some fear of insulin, but you didn't start Yes. You didn't start with the fear. Now you are you there now? Are you like seven years later? Do you have problem with it now? Or it? Was it a thing that you went through?

Yeah, so it was definitely a thing I went through. So probably a year after diagnosis, I switched jobs. And we came, started working for a dermatology company and was traveling with that dermatology company. And so it was my very first travel assignment, actually. And I got on site, got to my hotel room had picked up my dinner, and my blood sugar was high. And I think it was just kind of from the stress and increased anxiety of traveling all day and things like that. And so I was in the three hundreds, looked at my sliding scale, gave myself my insulin and sat down to eat. And there wasn't much of a you know, doctors don't often talk about Pre-Bolus Or how soon before you eat or how soon you should give insulin before you eat. And so I just give myself my insulin, sit down and start eating. And I'm watching TV, not as hungry as I anticipated. So I don't finish it, but I don't think anything of it, and then blindly cut unknowingly and I don't feel it at this point. But I get an alert on my phone for my Dexcom that says I'm dropping and I've got two arrows pointing down. And I was like, Huh, that's strange. I was like, my food will catch up. All I had was a salad like a Greek salad. It wasn't anything substantial to to catch it by any means. And then it gets to the point to where it's dropping. And it's not stopping. And I look again, and it's 34 with two arrows pointing down, and I was like, This can't be good. Mind you, excuse me?

Yeah, I'm sorry. I'm sorry, you were

hundreds. Yeah, certainly hundreds to my it just said low on my meter. But my last one had two arrows pointing down. My meter said 34, my meter doesn't have arrows. So I checked my blood sugar. Mind you, I didn't check my blood sugar before I sat down to eat, I just went off of my Dexcom also. But I checked my blood sugar, it's 34. And I like instantly get to this like, sometimes you don't, I feel like you don't know your blood sugar's low until your blood sugar tells you you're low. Like you, it takes your body a minute to catch up sometimes. And so I instantly feel the effects of a 34 that's dropping. And I know I am in my hotel room, I'm alone. No one knows what room I'm in. I haven't even talked to my husband since I, I mean, I literally had just checked in sat down and ate. And I have no choice at this point. Like, I know that glucose tabs are not going to do enough. So I get my glucagon out, somehow manage with like this violent shaking of hands, either from the mixture of anxiety and just below itself, shaking, draw up the glucagon and inject it in my arm. And then I wait, and hope that I don't pass out in a hotel room by myself.

Were you capable of thinking I should call 911? Or did that not pop into your head?

You know, so I didn't. And I actually called so one of the other girls that I met at this new company I had started had diabetes, and she's had type one diabetes since she was a child. And she was kind of my like, resource and my lifeline. So my first thing I thought to do was to call her and so I called her and she said, Okay, what hotel are you at? What room are you in? And so she knew to get that information right away? I did not. So I got that information to her. And she just stayed on the phone with me. And she's like, my very first words to her when we got on the phone was at what point? Should you not give yourself your glucagon? or at what point should you give yourself your glucagon? And she's like, Oh, well, you don't ever give it to yourself. It's it's only you know, in case you pass out or, and I was like, Well, I just gave it and she's like, wait, what? Why? And I was like, wow. And I told her the story. And she's like, Yeah, yeah, that's that's a good choice.

Yeah, there's, I mean, there's a lot of opportunities for you to give it to yourself. I think the way you described it was perfect, actually. Yeah. So how low did you lose consciousness?

I did not. I did not, I don't know. So she, I knew that I did not want to check it again. For 20 to 30 minutes, unless I started feeling worse than what I was feeling. I knew that it was going to take some time. And I knew that, just me personally, that sometimes the panic is worse than the number or worse than waiting. So I knew that if I checked it, it very well could have gone lower than 34. But I knew if I checked it, I was going to continue to overreact or get myself so worked up into an anxiety attack that I'm going to my heart rate is going to go through the roof and that it's just going to be worse for me. So I just stayed on the phone with her and waited and waited. And it was probably the longest 20 to 30 minutes of my life.

Did you ever talk to her about it afterwards?

Not really. No. I mean, we, we, I am also her lifeline. I mean, we will go six, eight months without talking. And I know if my phone rings and it's her. She's She lives alone with her young son. And I know that, that now is when she needs me. And I'll answer and she's like, Hey, I'm in the 40s. This is what I'm doing. You know, I just want to like I don't want to put this on my 10 year old son to have to call 911. Here's, you know, and I have her address. And so we're just kind of each other's lifelines. And when I first was diagnosed, she was definitely like my little bucket of knowledge. I would just pick her brain over tons and tons of things. But then, very quickly, I learned what's working for her and what she sees as successful management is not what I want, and it's not what works for me. And so, yeah,

I was just wondering if, like you were coherent or like it, but you know, if you're, if your recollection of those 20 minutes is the same as what It was really happening. That was hers. Yeah, that was what I was. Yeah, but okay.

Yeah, I don't know, after after I checked, you know, in that 2030 minute window. I was in the 50s. I remember that. And I said, Okay, I'm gonna be okay. And I felt good enough because you know, when you're that well, like, it's hard to eat, or it's hard to like, you know, and I didn't have I had glucose tablets, but I didn't have any gel I didn't have and I had like chips. And so I knew I'm gonna go and get a, like a full sugar soda. So I went and got a soda out of the vending machine. And I called my endocrinologist. He called me back and he was like, Well, what's your blood sugar? Now? By the time I talked to him, it was like, an hour later, maybe an hour and a half later. And I was only one like, 160s I don't think I ever I never hit above 165 That entire night.

And that was that the old school? Red Box. Yeah, just the mix it Yeah.

Oh, geez. Oh, yeah.

Yeah, a bit of an adventure.

I stabbed myself in the finger like multiple times, just from the shakes alone.

And y'all I gotta give you props. You stuck that? That big needle in your butt? Is that what you did?

No, no, I stuck it right in my like shoulder like my arm. Really? Yeah, she's and I was like, here we go.

is hard to go to sleep after that. Were you nervous?

Yes. So thankfully, my endocrine you know, I worked a long time with my endocrinologist when we worked at the hospital. He stayed my I've also since made him my PCP. I told them like, hey, if I get the flu, you can get me some medication. Like I have diabetes. That's, that's what I need to see. So he's all my doctors now. But yeah, he knows me very well. And thankfully, he called me like every two hours throughout the night, and he wanted to check on my blood sugar, because he actually had me not take my love Amir that night, he wanted me to take it in the morning. He's like, I, he's like, you're alone. For the first time traveling like this just happened. You need to like play it safe. And that's when I realized that I'm probably a lot more sensitive to insulin than I ever realized. But my food intake was comparable enough. And my correction factor is not what it appeared to be. Because essentially, every time I was giving myself insulin, I thought it was more so for correction, but really, it was correction and food. And so when you add a meal, and that has little to no carbs, and take that big of a correction. It just plummeted me.

You ironically, I mean, we've been talking now for a while. And you just the story mimics that of somebody who really was having their outcomes by mistake. Like, do you know what I mean? Like you don't want to say you didn't know what you were doing. But it sounds like you didn't know what you were doing. It sounds like Yeah, right. Like, it sounds like you were using insulin kind of haphazardly. But you didn't realize it and then know exactly right. So we put on this one day where your blood sugar shoots up probably from travel anxiety, and adrenaline and stuff like that. And then you come in with this big Bolus on top of having a salad which is not going to offer much resistance to begin with. And that's the first time you look and you say, Well, I don't know what I'm doing. Like, like, that's, you know what I mean? That's it's it happens to everybody. I think the podcast exists, because that's true. After talking to enough people, I believe that a lot of people who use insulin are I don't want to use the lucky like that it's going as well as it is that they're just Yeah, I agree. Yeah. It's like they're not making a lot of informed decisions. They don't know how insulin works. Generally speaking, doctors are kind of keeping them in a I don't know, they just you know, they're like, here, do this, do that. Yeah, you're higher than you want to be. But at least you're not injecting yourself with glucagon in a in a hotel room. And then that just becomes the norm. And if you're lucky you get through and but for most people, they end up with stories like yours once or twice a year. Yeah, yeah. So what did you do after that? Because I don't imagine you just sat around you were like, I guess this is my life.

Ya know, so the very next day, I took a mentality of I'm allergic to carbs. And even though that meal didn't contain carbs, I don't know what the switch was. But I mentally made this correlation of people who are allergic to peanuts. Don't run around. only eating peanut butter and jellies and injecting themselves with epinephrine just so they can have some peanut butter and jelly. I'm not going to eat carbs, and I won't need this sliding scale insulin that that tried to kill me. If I can just have a regular stable blood sugar, I'm not going to need that sliding scale. And that was my thinking, my endocrinologist who shared a few few words with me that it was wrong. That was not the correct thinking that I'm not allergic to carbs. But he didn't change my mind

or change or correlate, I understand the line you drew. I mean, I also I have this 124 hour experience that was valuable to me in the podcast, which is I was at the dentist one day. And I was peeing a lot. Like I had to like, no, he was doing work. I mean, in the middle of a procedure, I'm like, I gotta go to the bathroom. And so I got up and went. And at the very end of the procedure, I went again. And then the nurse grabbed the dentist and said, you know, he paid before he came in here before we started. And so the guy pulls me aside and goes, Hey, I think you have type two diabetes. And I was like, Well, I definitely know that I don't. But, you know, what, do you know why you're saying it turns out it was really iron deficient. Like my body was falling apart, basically. But not, not the point. The point is, I went home, and I had to call a doctor and make an appointment. So I called the doctor, I told them, You know what had happened, I'm lucky to live in a place where I wasn't gonna have to wait forever to get an appointment. And I had an appointment 48 hours later to get a physical. But for 48 hours, I couldn't bring myself to eat. Like I was just frozen. It really was I couldn't eat. I just didn't eat for days. And I feel like that's what happened to you in the beginning. And then it's where your brain went here like, well, I won't need insulin if I don't have carbs. So I'm going to not eat carbs. I think that I don't think there's anything I want to be very clear about this. I don't care how people eat, I guess Daniels, but I should say I really genuinely don't. I just want people to know how to use their insulin for whatever they're taking in. I have no opinion about people being low carb or not low carb. I think whatever works for you is terrific. But I do think that a lot of people get to low carb because of that fear and lack of knowledge. Like, you know what I mean? Like, I'm not saying you should be eating 1000 carbs a day or anything like that. But you know, yesterday Arden's home from college and she's, you know, in the afternoon, she says, I'd love a cheeseburger. I was like, okay, so she's like, I haven't had one in like, three months. And we took her out for a cheeseburger. She got some fries and a milkshake. And you know, Arden's a Wednesday is still very respectable. So how many carbs is that? I mean, hundreds, probably, you know what I mean? Like, it's a lot. Yeah. And I know how to Bolus for that. And I'm not saying you should eat a cheeseburger and french fries. I'm saying that people should know how to use their insulin. But moreover, that I think your pathway. I mean, it mimics what happened to me, right? Like, I was immediately like, Oh, my God, well, what I should do is not eat carbs ever again, if I have diabetes. And I wasn't using insulin at the time, it just was like, well, I shouldn't do that. I completely understand it. How long have you been doing it like that? I mean, because you switched to basically keto, right?

Yep. Yep. So I have, I'm still keto to this day. And now I like don't there is no, I think initially, it was really nice because I had lot I mean, I didn't even realize that doing something low carb would cause you to lose weight. And I had already lost some weight from just undiagnosed and untreated diabetes. But then once I got my insulin and started insulin, and I started, you know, using the nutrients that I was putting in my body, I gained weight back. But yeah, once I started low carb, I probably lost about 20 pounds. And I was like, thrilled. I was like, Oh my gosh, who? Why didn't nobody tell me? I think people have probably there's probably lots of things out there that say it but I enjoy pizza. So I didn't stop eating carbs until then. But yeah, I still am low carb. I don't know. I would say I like don't have a desire to eat otherwise, I just find but I don't I don't I'm not like a I'm not making like crazy almond flour things or I literally just eat meat and vegetables. For the most part and that's it.

It's not a nice way to say I'm not those people you see online.

I'm not. I'm not I don't have a cookbook. I'm not making fat bombs, or any. That's it's too difficult. I need easy things and I like vegetables a lot and

start meat. Start your own food. Facebook page where you're putting pictures off of your low carb meals. You didn't do any of that. Yeah.

No, no, no. It's literally just bacon in the microwave.

Unknown Speaker 45:10
Microwave bacon.

Danielle 45:11
Yeah, I did send the Baconator it's great.

I'm coughing now. I blamed the COVID. Yeah. Were you trying to name the the episode? Microwave bacon was you did it?

Microwave bacon? Yeah. I mean, that's it. So yeah, I live, I still live on microwave bacon.

totally gonna be the name of this episode. I just want to be unless you say something absolutely insane in the next couple of minutes. You're right there. And so when that happens, you have to dial back your, your baseline, and all of your

Yes, dramatically. So I got to a place to where I, you know, initially was in like the 3040s. I was taking every day 30 to 40 units. And I got to the place where I was taking, I would say 14 to 20 units.

Wow, wow, that's reasonable. So I mean, that's excellent. Do you pump or MDI or what do you do?

So I did I started a pump in March of this year.

Okay, recently. Are you using an algorithm control IQ? Or?

Yeah, yeah, I have control IQ, which has been amazing, because I would say it, you know, doing low carb and doing all of those things, worked for an incredibly long amount of time. And until it didn't, then in like, October of last year, it just stopped working like I needed. I now needed fast acting insulin for protein, I now needed fast acting insulin to just look at vegetables like it was something I was completely not used to, but yet still knew that I had a decent fear of fast acting insulin because I mean, I hadn't taken a unit of insulin and probably a fast acting insulin in yours. I mean, my blood sugar just didn't go high. Until it did.

It's a lot of combined with the Keto eating. And that Yeah, you did a ton of help. Your body was helping and now suddenly that part's over, I guess.

Yeah. So I had like, my C peptide rechecked, and he was like, Yeah, you your pancreas. It's just kind of absent at this point. You could go without, and

maybe you kill microwaves, Daniel. Yeah. If you had a crappy microwave, you've been standing in front of it for six years.

zapped my pancreas. Amazing,

isn't it that that Lada can take six years to do that, and longer? It's amazing. You know, it really is. So when you started using more insulin, did that trigger bad feelings? It did.

It did. And he knew. So he said, Well, let's switch to from just your theater jobs to the impact. And he's like that way you can give yourself half unit increments. And you can start small, because I told him, you know, otherwise, give me a vial of insulin instead of these pens, and I'll draw it up myself or dilute it drop, do whatever I need to do to take less insulin. I did not want to start with it's strange, though. I didn't want to start with whole units of insulin with my blood sugar in the hundreds. But when my blood sugar back up in October was running in the 250s. I would I called him in the evening and I'm like, I don't know what to do. He's like, take two units of insulin. I'm like, I can't take two units of insulin. I could die. And he's like, just take two units of insulin.

You like five years ago when a hotel room? Yeah,

exactly. And so I would take it and I mean, it would move my blood sugar 20 points. But it seems for me that anything over two hundreds. I am just sticky. Like it takes a lot of insulin. Oh, what I would consider a lot of insulin to move my blood sugar in the two hundreds. However, in the 150s I am super sensitive to insulin.

Yeah. Oh, that's not uncommon, or, I mean, I think most people go through that too. Like it's, yeah, you know, basic idea. You're taking an amount of Basal insulin that keeps you nice and stable. I don't know what you're shooting for. Were away from like food, like in the middle of the night. Where do you sit stable?

Right now we're back then. Oh, back then because we're talking about that. Back then. I would say I was I would go well, so I would go to bed at 190 to 220 and a Just my insulin, my Basal according to that number, and then I would wake up. I mean, it would drop me. I mean, I was still at that point taking too much Basal insulin for for my body, it would drop me to 80s 70s 60s I woke up in the 50s and 40s before and so I before getting the impact and then before the pump, I was like well maybe I need to split my lab Amir doses maybe I need to split this basil and my doctor that's an I was not I did not want a pump for a long time. And he was like, I think that you would be a lot more successful with a pump like you're a control freak, this is going to give you that control you're looking for you can't get this type of control in in fine tuning your your basil needs. Just with with your injections. You want that? I'm sorry,

I didn't mean to cut you off. I apologize. Oh, go ahead. He wasn't helping you by giving you old basil like love Amir either because you were probably shooting it in the evenings. And then 24 hours later, I mean, I don't think live we're living near doesn't really last 24 hours. So nevertheless, six hours of that 24 hours you're going up if you have a meal with more carbs in it. Now the suddenly you're 190 and the you're kind of autonomously deciding to shoot more love Amir because of the higher number. And then maybe the next day you have a little exercise or you don't eat as heavy in the evening. And then you you know, you get ready for bed at 120 and choose a different amount of basil. You were doing that right? Yeah, that's what was yes, I was. Yeah. I mean, if you had a like a new, I mean, like for SIBO as an example, like if you had a modern basil, you might not have run into those problems at all. And no, not for nothing.

There. He tried. He tried to give me to Siva.

Daniel was difficult.

I was just too much of a control freak. And I was like, No, I'm not going to try new things. So thank you. Again, I know I know what to expect with with this insulin. Oh, yeah. I mean, at one point, my insulin tried to switch me just from Novolog to human log, and I like threw a whole stink about it. And I was like, I don't care what it costs. Without insurance. I'm not changing my insulin. I know what this does to my body, you

know, probably wouldn't have mattered, right?

No, yeah. No, it wasn't. But I stuck to it.

Well, I mean, listen, no one can say that. You won't like stand stand firm, that's for sure. Okay, so you're using in pen, by the way, I should say in pen today.com. Unless they're not advertisers in 2023, when yours will come on. And then in that case, please don't go to that link. But if there's still if they're still advertising, go get yourself an embed. Exactly. A great device like, right, like it's given you a ton of functionality that, you know, it's kind of a mid middle ground, like you get some functionality from a pump on this app. And that, and you stayed with that for a long time. It sounds like

So yep, I started the impact in November of last year. And I, I actually used it until March of this year and the in pen between November and December, the amount of insight and like insulin on board that it would show me and that was half units gave me like so much excitement and kind of drove the hope for a pump. And so I had already met my deductible at the end of last year. So I told my doctor, I said, order me a pump. Like, I'm just gonna get it and I'll start it when I'm ready to start it. But I want insurance to cover it. So let's, let's go ahead. And so it got delivered on December 28. of last year

in Penn was kind of your gateway drug to a pump. Yes, it was it was the gateway, you were like, Hey, this is this is valuable. Give me more of this. Did you just not want to wear a pump? By the way? It feels like you don't want

it? No, it wasn't I didn't trust the technology of a device or a third party decision maker. That wasn't me. But I had also come to terms quietly and I would not have shared these with anybody but come to terms with I I'm not doing it right. I'm not doing something right. I'm still uncontrolled in the grand scheme of what I would consider control and maybe the pumpkin help. However, I would never tell my doctor that just because I don't know why they're like to be right. An independent.

Listen, we don't have time to go into why you're like that, but I like it. Basically. You're like a drunk driver. With somebody sitting next to him going Danielle you should let me drive. I haven't been drinking you're swerving. Have guardrails and do you know bouncing over the media? And you're like, I'm fine. And yes, at least I have my hands on the wheel. That's how you felt like I want to be in control this even though you didn't really have any control at all. Exactly. Yeah, that's a therapist. You need not not a podcast. Yeah. Although we could have started the hour that way and probably gotten through it. I'm sorry that we, we did it this way. But so, okay, so Medtronic, the Impend showed you kind of what was available, you move on to a pump. And And I'm assuming to I've been meaning to ask you this for like a half an hour. But now that the Lada isn't helping anymore like the like the long slow goodbye is gone. You seeing more impacts from periods and other hormonal stuff.

So I don't have any periods. I actually had hysterectomy in 2018. So that was a very, very, I'm so I'm just so happy for that. But I don't have to deal with any of that. So I have no like hormonal swings whatsoever.

There aren't many places. So I'll just

in my head.

Well, now you're trying to name this the show again, it's all in my head. What I was gonna say, is there not a lot of podcasts where people would be like, Oh, thank God, I had to have a hysterectomy. Yeah, this is one of them. If you were like, Oh, no hormonal switch was like blood sugar,

I 10 out of 10 recommended.

I didn't think anybody would ever say that either. So you're you're checking a lot of boxes today for things that have never been said on the podcast before. Okay, so you don't have any hormonal swings? The the Keto eating is taken down your overall insulin use, which is exactly what you would expect, are you. My question is, if I, if I held you down and stuck a bagel in your mouth? Would you know how to handle it or no?

No, absolutely not. Okay, so I wanted to try and find out what my carb to insulin ratio was. But my endocrinologist told me, I needed to eat one slice of white bread and inject one insulin, or one unit of insulin and see what happens. And I was like, that's not going to happen. Like, I don't foresee, anytime in the future, I'm going to eat one slice of white bread, I need something I have to find out. My because I don't eat simple carbs like that. And I have no interest in it. Now, if one day my, my mentality on food or my view of food changes, then maybe yes, I should look to find out those things. But for me, I really wanted to know, like, how I wanted to find out more on how the vegetables and the protein or something that's really complex affects it. Like that's the carb ratio, or the protein ratio. That's the ratio I'm looking to find. And my endocrinologist was like, your Listen, you've been doing your own thing this whole time. You're gonna have to figure it out, because I don't know how to help you figure it out.

Does your husband come to these appointments with you?

He used to, he stopped.

He couldn't take the staring between him and the doctor while the doctor was looking at him going, are you okay? And he's like, No, I'm,

yeah, you need to blink if you feel unsafe.

What's your insulin to carb ratio? Right now?

I don't I it's probed programmed, and my pump is one to 10 I do think that I'm super sensitive to carbs. So I think in because of not eating carbs for so long, so essentially, if I get like a low blood sugar, and I'm in the 60s, again, I don't ever drop fast anymore, because I don't have that much insulin on board and I'm not eating something to ask for it. Or I just I'm not super active. I mean, I'm pretty lazy, honestly.

Well, who's gonna? Nobody,

right. But I so I drift down. So if I'm drifting down and I'm, I start to get to the 60s and I know that you know, I need a little bomb. I only have like a half of a glucose tab. And I'll come back up to the 80s 90s so I honestly have no idea what my true insulin to carb ratio is.

Yeah. So you basically you eat a meal and there's an amount of insulin you know, or do you just let the control like you handle it when it tries to rise? What do you do?

The the control IQ handles that right now. So I have like a higher during the day during like eating periods. I have a I guess it's a lower insulin sensitivity that I have programmed in and then At night, early hours of the night, I had a pretty high insulin sensitivity and then early wee hours of the morning, it's a lower insulin sensitivity because I started to rise in the, you know, four hour 4am window. But yeah, I mean control IQ, honestly does a lot for for the management because I'm so low car, how low but occasionally we'll have to Rick, what's that? How

low? How many do you have a day?

of carbs? I mean, it's probably under 20.

Okay. Are you always in ketosis from the low carb?

I don't know, I don't. The only time I've ever looked for ketones is if I've had a really sticky high, but again, like, it wasn't, I didn't ever seek a Keto. Or like a state of ketosis. I just start after no fast acting,

right? Well, I mean, first of all, I applaud you for figuring something out for yourself. I think that's really amazing. That shows a lot of stick to itiveness. Just to find a way through it. Was it difficult to cut carbs out of your life at first?

Yeah, I would say the first. The first two weeks were difficult. But yet they were also really easy because I was driven by fear.

Yeah, you were you were just happy not to be scared.

Exactly. Right. And I had a lot of confidence in it because it worked from day one, day two. And so because I was driven by fear, I felt like making the change was suit was just super easy. Now when I've tried to get my husband to follow a low carb, low carb diet, he will share other feelings on whether that is easy or difficult.

He's like, That's nice, Daniel. I'm having pumpkin pie today.

Yeah, last night, the only thing he ate for dinner was mashed potatoes.

Boys are great.

Yeah, it's like okay, well, let's get after it.

Have mashed potatoes for dinner. Thank you. Goodbye. Yeah. And you don't you don't have a feeling like like, I remember mashed potatoes. They were good.

No, I do joke with my work team and my work family from time to time that I like to eat vicariously through other people are like, I'll go around like I'm notoriously will go around and try everybody's plate at dinner. So if you don't like to share food I'm not wanting to go to dinner with but yeah, like the second my food comes in everybody's foods. Food comes out. Stand up, grab my fork, and I walk around and try and steal a bite.

Did you and your husband decide to get married? Or did you tell him you were getting married?

Yeah, no, surprisingly, he asked. But I really think that he's looking for like that control that he needed.

He likes it a little bit. Yeah, exactly. Man. I say something that I don't know how it's gonna come off. I prefer a girl whose pushes back to honestly. So yeah, I don't know. I mean, and pushes back against what I don't know. It's not like, it's not like I'm out there going, you know, we're gonna do today. Like it's nothing exciting. I just I like, I don't know. I I don't know. I might have to go to therapy dance.

But exactly. Maybe we can get a two for one I

would love to. I was thinking earlier. I would love to. If you ever decide to eat carbs again, like fly me to where you are. I'd love to try to figure it out. Super interesting.

Just watch the watch me try this dive into a bagel. Yeah,

no, I just just the idea of like ramping up your insulin needs for carbs. Like it would be interesting to watch. I also want to tell you how grateful I am for this conversation for reasons that I'll explain right now. I have a really big Facebook page. And big by mean by the amount of people on it. And it's overwhelmingly a really lovely place to talk about diabetes. There's not a lot of the drama that you see in other places people aren't you know, backbiting each other and you know, type twos aren't yelling at type ones and everything. The one thing that's always interesting, is I don't stop people obviously from talking about how they eat either. So there are plenty of like ultra low or low carb people in there. They put up pictures that are food I joked about it earlier, but I that's fine with me. If you decide like Danielle has if you decide that you want to eat low carb, I gots terrific. I think whatever works is terrific for you. But once in a while, a few people do this thing. How do I explain this? Imagine Danielle, if you went on a Facebook page and you said, hey somebody you're in an automotive Facebook page and like, hey, somebody, I was hoping you could help me when I drive my car. I'm hearing a thump from the back left tire. And then a person came in and said, Well, you know you should walk instead that would fix that problem. and you're like, I'm trying to figure out the bumping in my tire, why would I walk, and then this person gets very kind of dogmatic about walking and not driving. And then suddenly another Walker comes in and starts making some case about how your car is bad for the environment. And then a third Walker comes in and they start like, like saying, yeah, and then you wouldn't be using oil and, and you're like, I just really wanted to know about the bumping in my tire, like, how did it get like this? Some people around low carb do that. It's almost like, never see Jurassic Park the way the velociraptors attack? Yeah, they come in from different angles where you're not looking. But I don't know that it's on purpose or not. I like to think Daniel, I'm, I'm a person who believes in people. I like to think it's not on purpose. But there are times a couple times a year where I'm like, this is a coordinated effort to make people not eat carbs. And, you know, one person will come in and say, Oh, well, you know, some say the person's like, well, there's a spike here, does anybody know what I could have done, they give all the information about their settings, and they're looking for help. And then somebody comes in, he goes, Well, you could stop eating carbs. And you're like, not helpful. And then a second person comes and goes, I don't eat carbs. And I love it. It's so happy. And I can't wait. This whole conversation is making me want bacon and eggs. And I'm like, okay, like, they try to like happy up the no carb, which by the way, I don't think there's anything wrong with it, just, it's like there. And then a third person comes in, and then a fourth, and I'm like you, you're the velociraptors that always come and do this, like, would just come in and say, Hey, I don't have any advice for you about this. But I eat low carb. And I know this wouldn't happen to me, maybe you could substitute something a low carb in this situation, or lower carb or you know, lower on the glycemic index. Like there's a lot of ways to be really helpful. But instead it turns into like, this. What feels like coordinated pushing. And oh, yeah, absolutely. You know what I mean? And I've never seen anybody put up and by the way, there's plenty of low carb posts. I've never seen someone come in and say, you know, you might not be so unpleasant if you had sugar once in a while, like you don't I mean, like nobody from the other side of it comes in and pushes them the other way. And it's just really, I don't know, like, it's, it happened today very

much is like a club. That, that see. And again, that's why I, you know, don't keep the almond flour and the cookbooks in my house I don't ever want to be be a pushy, low carb eater. But you know, those similar posts in those same posts. If somebody were to say, hey, this was our meal, this is how much insulin I gave, but they spiked. I, I would have nothing to add. Yeah. So I wouldn't comment. I would read it, I would probably read through the comments, and be like, Oh, well, it looks like good advice and move on to the next post that's applicable to me. Because I have nothing to add, like you. You obviously eat cereal. I can't I can't relate. If you offer any advice, I'm not going to tell you to eat eggs instead of cereal. I don't talk to somebody else who eat cereal,

Daniel, you're an adult. Congratulations. Because because I see that there's a person I'm thinking of right now, who I've seen, you know, they come to they come to tell their story about how, you know, carbs are the devil. And the example is I went out to dinner and I got something that had carbs in it that I didn't realize, and my blood sugar went up to 250. And I couldn't get it back down. I'm like, Are you just trying to tell people you don't know how to Bolus, like like, because that's what this feels like, to me. You don't like you can't manage carbs, which is fine. Like you can either and you don't have any practice with it, which is fine. But it's used as an example of why you shouldn't eat carbs, like, no one should eat carbs. Look what happened to me when I had a drink with some carbs in it. And, and I sit back and I watch it. And I think, you know, people aren't seeing that the way you think. Like, I know that they think they're saying see carbs are bad stop eating carbs. But I think what people see is I don't know what I'm doing. And I think they're making their counter argument when they think they're making an argument. And there's nothing wrong with like, the way you got to low harvest is honest, you know what I mean? And, and a lot of people are going to make it that way. And I'm I guess what I'm saying is, is that if, if people didn't try to trick you into being low carb or push you gently into being low carb, you might just come about it on your own. Like if that person just came in and said, Hey, I don't know how to answer you on this. I'm very low carb. But in this situation, if your kid had a lower carb thing, maybe the spike wouldn't happen and just left. I think that would be more valuable towards getting somebody to look into a low carb lifestyle than it is to do that. The only thing I can compare it to. And the one problem you'll have if you manage a big Facebook group, is there are people who try to sell you things. So I'm gonna use a t shirt as an example. A person who really doesn't belong in the group comes in and they'll put up a picture You're gonna be like, Oh my god, I got this t shirt for my type one. It's amazing. And I just want to show it to all of you. As soon as this happens, one of two things is happening. Either somebody's got a t shirt, they wanted to show people, or they're going to start a conversation that eventually leads to somebody saying, Oh, my God, do you have a link for that? Because they're trying to use the people in Facebook is fishing about to sell these T shirts. And by the way, sometimes there's not even a t shirt. They're just stealing money from people. So I'm aware of how that works. Someone comes in post a picture the t shirt, then another account goes, Oh, it's so cute. Where can I get that? And then the first person comes and goes, let me just give you the link. And it's all it acts like it's all very normal. But it's a coordinated effort to show you the shirt and make sure you know how to buy it. That's what the low carb thing reminds me of. Like, it's a coordinated effort to try to move you in a direction. And I just think that it's it's disingenuous, like just coming in. You know what I mean? Just be like, hey, and also, who the hell wants that advice? There's a bump in the back left tire on my car. Like, what are you telling me? I should look into hitchhiking for? Like, it's just, I don't know, it pisses me off. And it's, I have to deal with it. When I get done with you today. It's the next thing I have to do waste my time explaining to adults how to be adults. And I don't care about their low carb, they could talk about all the freaking one. I don't give a shit, honestly. So anyway, I'm sorry. No, I've been upset about that for the last hour.

Well, and I've met other people who are low carb, and it's almost like this like weird cult, like vibe. I've met other people who are low carb, and two are insanely strict about how much protein they take and how much fat they take in and they are like, strict keto, and even outside of the the diabetes realm. The low carb community, they're just, I mean, honestly, they're crazy. So again, I wouldn't, I'm a fear eater, I'm, that's what we'll call it. I'm not a low carb eater, I just

really don't want to be involved in cars. Well,

I just don't want to get messed up with carbs. I don't even mean

it. Like, it doesn't even matter. Like forget low carb. It's it's just a pervasive, it's a way of thinking that every time I see it in the world, no matter where I see it, I rub up against it, I go, I don't understand why this is the tactic you took, like, for instance, during COVID, you could have turned on any podcast that was manned by a person with a six pack and no body fat. And they would have told you like you don't want COVID to bother you than just being shaped like me. And I'm like, Well, okay. Okay, I mean, COVID is here. Now, I guess I could get my body fat down 2.5 In a week before I go out, like, how would I do that? You don't I mean, like, it's, it's these overly simplistic answers to things like just do this thing, which is fairly. I mean, you know, like bodybuilding is an example that that's a big undertaking. It's a lot of effort, it's maybe doesn't fit into everyone's life. And when you're 25 years old, and you don't have a great job, so you can be in the gym for five hours a day, it's easy to stand up with your shirt off and go look at me, look at how great I look, you should look like this. I don't know how I'm gonna do that. You know what I mean? Like, I'm sure if I quit my job and told my kids, they were on the road and sold this house, I guess I could, you know, but and then it just, it's just a it's a team mentality. Like, I'm on Team bodybuilding. I'm on Team low carb, and there's no, we're not allowed to talk about it. Otherwise, I try really hard to foster a place where people can talk about how they eat. Like, I want to, I want to be clear, there are people who will hear this and know that I'm talking about them. And I don't, and I don't I love them in the group. I love that they share their low carb lifestyle, it I've seen it help a lot of people who are interested in it. It's not a perspective that I can personally share. So I'm thrilled that they're in there. I like them. They're just stopped doing the Velociraptor thing. Like if you're listening, if you don't know you're doing it, it comes off really smarmy. And if you do know you're doing it. Yeah, shame on you. That's my message, I guess. Took me 20 minutes to get to

you don't know that we're talking about you than we're talking about?

I think yeah, I just think that I don't know that they're doing it on purpose. Like, there are people who helped me with the Facebook group or like, this is completely on purpose. And I'm like, I always want to just think that that's the people. But I mean, I know there's a way to share what you do without manipulating people. And that I don't that I'm not okay with the manipulation part is the part that I have problem with. Anyway, I'm gonna go I have to say that online and get yelled at. Yeah.

Yeah, I think the, the, the, the Facebook group just needs to continue to be able to provide a safe place for anybody to ask any question free of judgment, because all they're doing is seeking help. Yeah, they're not you know, if somebody asked ask the question, hey, what could I eat differently to not have this spike? Sure, throw in your low carb, jargon and nonsense as to what's working for you. But if somebody says how do I avoid this spike? This is what we ate. Here's my graph. They don't care about your your low carb vs. Yeah. We want to know how to give the insulin.

My car is not idling Well, which they do. Walk. Okay, great.

Well, yeah, well, Nike.

And then eventually, one of them's gonna come in and say, you know, that slaves make those shoes, right? And I'm like, Oh, my God, like, I don't like the internet,

and then it and then it spiraled.

And I want to be clear, that's not the vibe of the Facebook group. This happens every once. It happens every once in a while. And everyone saw I have to get involved. And I have to be like, Look, you can't do that. Like, don't tell this person to odd. That's not what I'm saying. I'm like, read it. That is what you're saying. And I, I kind of

want to play like devil's advocate and see a low carb post and like, sneak in the comments like, well, you should really eat cereal.

You should say, Oh, my God, I can see your abs. You should have cereal. Yeah. Because, by the way, that's a really good point, right? Like, I know, it sounds silly, but everyone thinks their ways the right way. And for every person who thinks that there's a person on the opposite side who thinks you're wrong. So you know, you might be standing there as lean as could be, you know, with all these muscles popping out everywhere. And there might be another person looking at you going, I don't think that looks good. Now, I don't care what people think. But you have to understand that there are other opinions on all sides of ideas. And for some reason, I've never seen a person who eats carbs. Tell a person who doesn't eat carbs, that they're wrong. But I've seen people who don't eat carbs tell people who do eat carbs that they're wrong. And I and I have philosophize in the past, that it might be stemmed in really what your episode was about today. And fear, like they may be just gotten to a really bad situation. They couldn't find their way out of it. And they decided the only way I can handle this is the way you did which there's nothing wrong with. It's just you know, what's wrong with it is when you when you start just pushing it down other people's throats, it's just it's tiresome. Yeah, you know. Anyway,

no, the only thing the and I mean, I'll still occasionally dabble in. It's our bite of carbs. But again, it's when other people at the table order something that looks good. Yeah. Like, oh, can I just have a little sliver of your your tiramisu.

I felt bad for you. Because you said you like pizza. And then I looked online, I see where you live, and there's no way there's good piece of that.

Oh, I mean, we it's, it's just a different kind of pizza. It's not the thick crust pizza. It's the cracker crust.

And, and you know why I said that, Daniel? Because you like pizza where you live? And look at me acting all like Oh, that's not pizza. This is pizza. That's that's I did it so you can hear it. That's what everybody's saying to each other online when they're like you're not doing it. Right. So just who cares? Yeah, I really, like I said,

microwave bacon Shut up.

i By the way, that makes me do you supplement your diet? Now taken like,

I mean, I probably should I don't take any vitamins. No, I did do to get told I actually just got my lab results back from an appointment I had yesterday side. No, my 81 C is 5.6. Awesome. But no, my vitamin D is low. And so my doctor sent me a note and told me that I should take vitamin D or spend more time in the sun. Both of those don't sound like things I want to do at the moment. I mean, I'll probably go get some vitamin D. I don't want to spend any time in the sun.

Jenny would tell you to get liquid and put it under your tongue. That it works much better with vitamin D. Yeah, that it works much better than swallowing it. Also, I don't know if they'll still be advertisers next year. But at athletic greens.com forward slash juice box if you

you, if you get I think if you get on a I forget what they call it like when it reoccurs What the hell? Why can't I find words?

I think that's called reoccurring.

Subscription. If you get a subscription, I think they send you five free packs of trap five free travel packs and liquid vitamin D on off for a year. And again, that's athletic greens.com forward slash use flex. I'm just gonna start sticking the ads wherever I want them. Anyway, by the way, by the time one of you here is that I'm sure they won't be advertising anymore. And I'll be like, I'll be irritated. clicked on. Yeah, but I actually I actually use athletic greens. So I was wondering if you were taking something that was like, you know, kind of hitting you with vitamins and everything like that, but sounds like you're okay.

Yeah, yeah, it's not bad. Lean. All right, you couldn't ask me to Bolus for a bagel but I mean, I can whip up some mean scrambled eggs and salad.

The bagels around here have about 70 carbs in them.

Oh my gosh, that's like a week of eating

my stomach and they don't they don't really digest right away or anything. Yeah, hit your for like, oh, five hours. It's nice.

My son would be an absolute heaven. I do like to smell carbs is that weird? Like I love to like, as he's making a sandwich I like shove my face in the bag of bread and just take a big whiff. I mean, I think as long as too much information,

walking past strangers and smelling them as they go by I think it's not that weird, you know?

I mean, I probably have done something along those lines and some other days of my life. But well, that's a whole nother episode to

anything that we haven't talked about that you wanted to talk about.

I don't think so. I think we covered just about everything.

Is there any chance you're gonna go to a therapist and find out why you need to be in charge?

Oh, I mean, I don't think so. That would be that would be like relinquishing some control.

No, I just want to just say that so I would I give the control to the therapist. That sounds ridiculous. Anyway, it sounds like you're doing fine. I don't think everybody needs to fix every little thing about them. But it is interesting that you know what about yourself? And yeah, it's, it's cool. I mean, honestly, you were terrific. So I appreciate you doing this

a huge thank you to Danielle for coming on the show and sharing her story with us. And we're gonna thank cozy Earth cozy earth.com

Speaker 3 1:21:45
Go get your sheets, get your towels, get your joggers, get your call food get comfy, cozy, cozy Earth.

Danielle 1:21:51
And don't forget to use that offer code juice box at checkout to save an astonishing a mind numbing a life altering 40% off of your entire order. If you're looking for community around type one diabetes, please check out the private Facebook group. It is absolutely free. It has 40,000 members and there is something happening in there right now that you would love to be a part of read about or just kind of lurk around Juicebox Podcast type one diabetes on Facebook Do not miss it. Doesn't matter what kind of diabetes you have. You are welcome there. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast.

#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.

+ Click for EPISODE TRANSCRIPT

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.

+ 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.

As you heard earlier, this episode of the podcast is sponsored by the contour next gen blood glucose meter. But when you get a contour meter, what you're really getting is their test strips. Contour next test strips feature remarkable accuracy as part of the contour next blood glucose monitoring system. They're the number one branded over the counter test strips. And they of course have Second Chance sampling. Second Chance sampling can help you to avoid wasted strips, contour next.com forward slash juice box. Near the top of the page you'll see a Buy Now button it's bright yellow. When you click on that, you'll get eight options of places online to buy contour meters and test strips walmart.com Amazon Walgreens CVS pharmacy, Meijer, Kroger target Rite Aid. These are all links you'll find at my link, linking D link links blink blink blink link. I'm just getting head over there. Now once you please listen, the contour meters are incredibly accurate. They are simple to use. They're easy to hold, easy to read, and they have a bright light for nighttime testing. Part of me wants to say that the second chance sampling is the biggest deal. But honestly, it's the accuracy. These meters are accurate. And I know a lot of people like to think well I have a CGM. I don't need a meter. You do. You need a meter. You need to be accurate. You deserve it to be accurate contour annex.com forward slash juicebox. Take a look at the contour next gen and the other meters available from contour. We use my links you're supporting the production of the show and helping to keep it free and plentiful. 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 feet on the floor. Don't know the difference between hypo and hyper will explain it to you. These are short episodes. They are not boring. They're fun, and they're informative. It's not just that 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 qu small respiration is, you will when you're done, ever heard of a 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.

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.