#550 Is Nina Willing to Change?

Nina and her daughter have type 1 diabetes.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to Ooh, look at that, huh? And welcome to Episode 550 of the Juicebox Podcast. That number took me by surprise for some reason.

On today's episode, I'll be speaking with Nina who has type one, and so do other people in her family. So there's a lot going on here. It's incredibly interesting. And of course, you're going to love it. While you're loving it. Remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. That I love that partner. Always consult a physician that comes out of my mouth like 123. Scott, what's your name? My name is Scott. Scott, what do you say in the middle of thing, always consult a physician, always consult a physician? It just I can't not say it. Always consult a physician. I might have to edit that out. That was terrible. No, you know what I'm leaving it. Always consult a physician. It's a lot about breathing. Like. Always consult a physician. It's almost like it's one word. Always consult a physician before making any changes to your healthcare. You see it, it's just boom, boom, boom rolls out. Alright. podcast Here comes.

This show is sponsored today by the glucagon that my daughter carries. g vo hypo Penn. Find out more at G Vogue glucagon.com forward slash juice box. You can support Type One Diabetes Research and the Juicebox Podcast, all you have to do is go to T one d exchange.org. forward slash juicebox. They're looking for type one adults and type one caregivers who are from the United States to participate in a quick survey that can be completed in just a few minutes, right there from your phone or your computer. You can do it just sitting on your sofa. It's super easy to do. I did it in about seven or eight minutes for Arden. And you can too. It's completely HIPAA compliant, absolutely anonymous. And you'll be helping people with type one diabetes, just by giving them simple answers to simple questions, questions about living with type one. So if you've ever thought about supporting people with type one through research, this is an incredibly easy way for you to do it. You don't have to go to a site or see a doctor. And the questions are shockingly simple. I was actually surprised when I took the survey, it's not going to take you a lot of time and they're not doing any deep diving or probing questions that you're gonna think Oh, that's too personal. I don't want to share that. T one d exchange.org. forward slash juicebox. support people living with type one and support the podcast all in just under 10 minutes.

Nina Eizikovitz 3:02
Hi, Scott, Nina, which I have been type one diabetic since I'm 17 years old. So that let you do some math here. 23 years. And I also have a type one diabetic daughter who was diagnosed about a year and a half ago. So you're 40 I am 40 look at that seven

Scott Benner 3:22
in three years. 10. Two and one is three. And he carry the one and you get a four. There you go. Thank you. I wish I wish it just does it. Like just pop into other people's heads. Do other people here like 23 and 17 and just go that's

Nina Eizikovitz 3:38
40 hands on what your what you do like what your life is like? Like I'm a realtor. So numbers are much you know, I do that all day long, I guess.

Scott Benner 3:46
Yeah. I was listening to you talk right and consciously deciding to add up your, your these two numbers. And I could see a whiteboard in my head. And it was like 2317 730 I got like, Oh my god, I'm I'm probably a moron. I did it. Look look over celebrating. Plus now talking about it has made me completely forget the salient details of it. So you've had diabetes, since you were 17? Correct. So for 23 years. Gotcha. And I have to tell you, I ran my eyes. I began to run my eyes over your email last night before I went to bed and stopped myself. Because I was like, You know what, let's just do this while we're recording. So you've had type one since you were 17. Your daughter was just diagnosed.

Nina Eizikovitz 4:37
She was diagnosed in October 2019. Okay, a

Scott Benner 4:41
year and a half ish. Yes. But I

Nina Eizikovitz 4:43
also have a type one Father, type one brother type one nice. Those that say it doesn't run in the family. Come meet me.

Scott Benner 4:51
I don't know who says that.

Nina Eizikovitz 4:54
Heard it. I've definitely heard people say that. You find not genetic. I'm like really? I think too. differ.

Scott Benner 5:01
It's hard to wrap your head around the idea that it's not. I always want I always thought people just said that. So you felt comfortable. Like, I don't know, like your daughter's diagnosed and they get Don't worry, it's not. Right. But as you're looking at your other seven kids behind you thinking, oh my god, oh my god. Oh my god. I don't know. I mean, I'm sure there's a doctor that could come on and tell me the real skinny but I type one. Forget type one autoimmune issues appear to travel in family lines. That seems obvious to me that everyone in your family ended up with type one is fascinating. Are there other autoimmune or just type one? Oh,

Nina Eizikovitz 5:37
I have thyroid issues. hypothyroidism, I have a different daughter who also develop that. I have a niece with celiac. You know, there's stuff

Scott Benner 5:49
there's definitely stuff you have hashimotos or do you have?

Nina Eizikovitz 5:53
No so my daughter does it not?

Scott Benner 5:55
Interesting. So you have hypothyroidism? She has? hashimotos? How old's the hashimotos? Daughter? 1515. How old was ultegra? With type one, nine? Do you have any other kids?

Unknown Speaker 6:09
I have two other kids?

Scott Benner 6:11
Are they like themselves?

Nina Eizikovitz 6:14
You know, I think that like we just take one day at a time here and everything is doable. Like everything that we're dealing with is manageable. So we'll take it part of it, but we'll take what we have.

Scott Benner 6:25
I know plus, I'm starting to feel like if thyroid medication ever becomes incredibly valuable, I'm gonna be wealthy, because I'll just start a black market where I sell to listen to people. Which I wouldn't do in case anyone's listening in that please. I'm just saying. Okay, so daughter, you know what? I gotta tell you, Nina. I'm gonna need a couple of I'm gonna need a notepad for you. I just realized, I don't have a clean sheet of paper here. I'm about to get behind. Nine. Type 1/5 rain hashimotos you're 40 type one. hypothyroidism, your dad. type one. type one. Who else?

Nina Eizikovitz 7:12
I have two brothers. One is type one other type and his daughter is type one.

Scott Benner 7:18
Or type one. Okay. That's it. 12345 type ones. 123 thyroids. Good times. Well, you're getting close to like a christmas countdown song.

Nina Eizikovitz 7:36
Yeah, it's a little bit crazy. Kidding. Okay,

Scott Benner 7:39
so give me a second. People are like Scott just knows the questions asked not when there are this many questions. Scott doesn't know what question to ask next.

Nina Eizikovitz 7:51
I'm ready. We're ready. Go for it. I'm

Scott Benner 7:53
gonna start with what made you want to be on the podcast, I guess.

Nina Eizikovitz 7:57
So I have to say when my daughter was diagnosed, and we can kind of get to that whenever you're ready. I don't want to jump in. But I it was a different was on the other side of it. As much as I knew a lot and honestly knew more than everyone in the hospital was trying to teach us and educate us. I was like, Just get me out of here. I know more than you're telling me. But I didn't know what it was like to be a parent of a child with Taiwan. And I think I was on I must have been on a Facebook group and I saw something about Juicebox Podcast, I quickly went to, you know, look what it was. And I started listening. And I, I guess I know you've had other type one parents on before, but I felt it as like, I was learning about Taiwan from the other side of it, and things that I was already doing. Like I never from day one. I never counted carbs. I was never hospitalized when I was diagnosed. So I kind of just did my own thing. Like I had a brother who was diagnosed years before me. So I basically diagnosed myself I was 17 years old. I was going to the bathroom a lot. I was like, Oh, this isn't normal. I took blood, his blood check machine, change the needle, clean my finger. I was like, Oh, I don't remember. I was probably 353 80 something like that. I was like, okay, when to find my parents. I was like, Yeah, I think I have diabetes, guys.

Scott Benner 9:17
That's fine. We already have a drawer for that. So Exactly.

Nina Eizikovitz 9:20
And I remember they call the pediatrician and he said, like, you know, let's just start on a little bit of insulin, but there's no need to go to the hospital. Like you guys know what you're doing and we don't need to you know, I wasn't I wasn't in DK. I like I must have caught it somewhat early. And so I never really got that education, which I guess in some ways might have been better because I'm not the type of person that could have handled counting carbs like I just, I was on shots for years like needles and not even pens, but needles and vials for years. I don't remember when I made the switch to pens. I don't even think it was for like a good amount of time. I think I really was on needles. And vials for a long time. And the pens only I used occasionally like travel. I don't know why it was like, a luxury. I'm not sure if it was an insurance thing or just I was used. I was very comfortable. Like I never. This is what I know this works for me. I don't need to go on a pump. I'm not interested like this is years ago.

Scott Benner 10:19
Can I ask? Yeah, because it seems just when you're talking, like if I had to guess you're more of a, like a self starter than no waiting for somebody to tell you what to do. 100% and when a problem comes in your face, you think we can do it not Oh my god, we're gonna die.

Nina Eizikovitz 10:37
Yeah, I think that's always been my attitude, like, okay, like, this is not fun, but I'll deal with it. And

Scott Benner 10:44
I'm incredibly interested always in the small aspect of people that one person can hear something and think, and they and they shrink. And they're like, Oh, no, like, who will help me with this? Where do I hide? How do I get away from this? And some people hear that thing. And they're like, I'm gonna get on a horse and point a sword at people and run forward and see what happens. It's super interesting. The different responses that can come in, I don't

Nina Eizikovitz 11:10
think you have a choice sometimes. Like also, I guess it wasn't like, Wait, what? What is type one? What is diabetes? What is it like it was in my family? I knew I grew up with a brother who had it. So it wasn't like, I can't live with this. What am I going to do? It was like, Okay, how are we going to figure this out now? Yeah, I'm sorry.

Scott Benner 11:28
I was just gonna say it's just fascinating, cuz I just kind of literally last week finished a conversation with somebody, and we never really dug into their sibling, but their sibling got type one, two, and just didn't handle it. Like they were in the exact same situation as you were meaning they had an older sibling who had had type one diabetes, they were diagnosed, and they just, they just did the exact opposite of you. And it's not like the person's like, I'm sure, you know, they're like, kind, nice, educated, you know what I mean? Like, thoughtful. They just, that first reaction seems to be so important about different personalities, I guess it just is. It's that simple, I think but it's it's just fascinating to hear that. I mean, you really just, I mean, listen to what you did. You diagnosed yourself. You didn't go to the hospital, and you just figure it out. What did figure it out mean? Because that's 23 years ago. What was your measurements for success and health.

Nina Eizikovitz 12:21
So I mean, I was in I was a senior in high school. So I was not the one thing I said from the beginning was like, my close friends will know. But this is not something I'm like shouting from the rooftops like, I don't want everyone to take pity on me. I hated the like, Oh, I have a sugar free Piece of cake for you while you're coming. I was like, please don't like I don't want that. I don't need that it is not actually sugar free does not do anything different than that chocolate cake that's sitting right there. Um, and I just didn't want that conversation. I was very private about it. Yeah, I also was planning to go abroad to study my freshman year of college. So that was like something my parents I know were like, okay, like, it's, I think I was diagnosed October. And I was going away that like following school year, so we had like, just under a year to kind of get everything into place, because that was clearly happening still. And somehow we did, like, we just made it work. You know, I, I at the very beginning, I remember taking like, oh brand pills. My pediatrician, I think also had either type two or something. And he was very, he was experimenting with these old brand pills, and I was swallowing so many pills before I put anything in my mouth. And for like, a couple days I was doing it. And the truth is, maybe it was helping. Maybe I was honeymooning, who knows. But I think the like the thought was that the old brand would dissolve.

Scott Benner 13:44
It's like like, it sounds like if you met this guy today, he'd be like, I'm gonna get you a diffuser. And we're gonna say

Nina Eizikovitz 13:50
exactly wonderful. And at one point, I looked at my parents, and I'm like, I'd rather just stick myself like this is ridiculous. Like, I'm not even hungry for food after as well. These are the bills. Yeah, so I just it was like, it was a couple of weeks. Couple of days. I don't remember. But I remember carrying around like little Ziploc bags of pills. And I said, this is not working for me. Like, I'll just inject and

Scott Benner 14:12
be done with it. And we use regular mph. I was

Nina Eizikovitz 14:16
using Yeah, I was I believe it was nnr. Okay, um, and I remember my mother was very into like, different businesses did different things. And at one point, it must have been after I was diagnosed, I could be wrong. I don't remember so much. But we had my father we had my brother and we had me so we had all these glass vials of insulin around and it made her crazy because they were constantly falling out of the fridge. And she's practical and said like there's got to be something that we can you know make to go around these bottles that protects them. And she developed the thing she called it the insula, leave in suspense asleep and delete something. It's funny because it never really like she sold a few of them. I mean, this is way before eBay and internet shops and Etsy. years ago, she sold a few of them. I don't even know how word of mouth I guess and then fizzled out. But like, I remember like a few years ago looking and I'm like, look at this, like all of these products and all of these diabetes stores. It's unbelievable.

Scott Benner 15:14
Yeah, I'm interested by all that too. Like, we're very minimalistic around here about stuff like that. So, like I have a small, like, I don't know, it's probably six or seven inches long, four or five inches wide and tall enough that an insulin vial can stand up in it. And we just wrap a rubber band around Arden's insulin vials and put it in that and shove it in the back of the refrigerator. Right. Then, everyone we use just comes forward and it gets jammed in with the butter. And if it looks like it has butter on it, somebody wipes it off.

Nina Eizikovitz 15:46
I feel like also now the the active vial that we're using sits out on a dresser because we're constantly doing pump changes now years ago, I kept it in the fridge you needed to inject you went to the fridge take it took it out, it fell out. There's less in and out of a fridge, I would say so let's

Scott Benner 16:01
Yeah, I have no trouble with opening a vial and leaving it out in like in an air in an air conditioned environment. I don't worry about it. To be honest, during the winter, it's not like we're heating the place to freeze. You know, it's a it's usually about 68 or maybe 70 in here. Yeah, I just I don't know. Like I don't see as long as you don't have it out for more than a month. I've never really seen any big deal with it. Work. Yeah.

Nina Eizikovitz 16:25
So I just feel like the way I've started using insulin over the years just developed into like, Okay, sit out for a while, you know,

Scott Benner 16:31
do you not think that some people just like to buy? What would you call them like charges? Yeah, stuff. Right. Right. So

Nina Eizikovitz 16:38
I might admit to being one of those people for certain things, especially when my daughter was diagnosed, I felt like I had to buy everything and anything that would make her excited or happy and, you know, the pump peel stickers and the Dexcom patches and whatever it was, and she used them for a bid and now that like you know, she went from seven to nine. It's like, okay, like once in a while she'll change the sticker on her pumper. But I did whatever I needed to do to make her excited about this.

Scott Benner 17:08
Yeah, I don't not get that I just think some people lean into the most recent example I have is Kelly got me like this little drone. So you just fly it up in the air. And I joined a Facebook group to try to learn about it. And before you know it people are like I've bought a different color prop I bought a sticker to put on it. I bought this to do it. I'm gonna get this and like what it goes up in the air. You can't see it anymore. Right? I don't understand the point of this. It could literally look like a giant turd and 100 feet up in the air you wouldn't know and it wouldn't matter. I don't understand why it matters. Everything's a business. Yeah, I people just get really wrapped up in. You know, I mean, I can think all the way back to when I was a little kid you could buy like, you could buy tips for your shoe laces to make them different colors. I bet people do that. And I'd be like, wait, why? Why do you care? When's the last time you looked at your shoe lace? I don't understand any of this. Anyway, is pretty fascinating. Okay, so back on track. You've got diabetes for a long time you come through that RNN process, which, you know, I've had enough conversation with the people now to know that it's fairly laid back. Meaning you'd get up in the morning, give yourself some insulin, go about your day. And your goal was basically like what don't get dizzy.

Nina Eizikovitz 18:21
Yeah, you know, I don't remember. I definitely remember checking my blood sugar throughout the day. But I was incoming. I was finishing high school. I started college. I definitely did not walk around with a meter in my bag, like for sure not. I wasn't wearing a glucose monitor at the time. I checked. I at that point in my life. I felt when I was low. I had symptoms. I knew I treated I moved on. Was I 70? Was I 40? I don't know when I got shaky, sweaty whatever the symptom was that year because it has changed over time. Yeah. I treated and I would check. I definitely didn't check before every meal. I mean, like I really did the bare minimum but my a onesies were fabulous.

Scott Benner 19:02
Well, that Oh, that that insulin was very like blanketed, it just you ate at certain times to keep yourself from getting low is basically how that worked. Yeah, yeah, it was like, and it worked.

Nina Eizikovitz 19:13
And it was fine. Right? And at some point, I must have made this switch over to L. Like, I guess Atlantis or something like, I don't even remember.

Scott Benner 19:22
I love that you've had it so long. You don't know.

Nina Eizikovitz 19:24
I really I don't it just became something that I did. I didn't really think about it. And looking back sometimes I'm like, how did I make it through a year abroad? Like how did I do these things? I did.

Scott Benner 19:38
Do you think if we had a giant macro view of you if we had if we had a god drone and we put it up in the air and followed you around for the last 23 years, we would see you just barely missing dying a couple of days.

Nina Eizikovitz 19:48
It was definitely one time when I was walking around. I was in Israel for the year and I remember like walking I was walking a lot and I remember my legs like feeling shaky and I was like oh, I walked a lot Well, you know, that's and then at one point, I was like, Oh, my blood sugars probably low, I should probably eat something like it took a while for me to even realize like, that's why I was feeling the way I was feeling. Yeah.

Scott Benner 20:09
Now, definitely moments like that for people listening who were modern day managing. Can you please tell them that if they were using novolog and lantis? They could not have lived like that?

Nina Eizikovitz 20:19
Oh, yeah, no, definitely not. Right. A different lifetime. Yeah. And I will tell you now I have a pump and I have a Dexcom. And much and it's funny because I didn't get a pump until my first daughter was born in 2005. And I, I was I think I had never had like a low episode was never hospitalized from, you know, passing out. But there was one time my husband couldn't wake me up. Like he, the morning whatever it was, went to trial, and I wasn't waking up, but I remember like, feeling covered in juice. And he was shoving juice boxes in my mouth. And I finally came to, so we didn't have to, like go anywhere hospitalization, ambulance, anything, but I remember I was pregnant with my first daughter at that time. And I remember Actually, I looked back to check my emails, I have an email to my doctor. And I wrote to her like, Okay, I think I'm ready to start talking about a pump. And she was like, well, you're pregnant, not the best time to start. Now. Let's talk after that was like, what I finally said, I'm ready. He's like, we have to do this now. But she didn't want to start it in the middle of pregnancy. So I waited till right after I delivered. So it was I've been on a pump since probably 2005. Right. So my daughter was born November 2005.

Scott Benner 21:34
She didn't have an opportunity to have any babies on a pump. That was your last one.

Nina Eizikovitz 21:37
No, that was she was my first she was your first so you had three other kids. I was on a pump for all of them. Okay,

Scott Benner 21:43
was there a big difference?

Nina Eizikovitz 21:45
Um, I think given Yes, the answer is yes. I was definitely easier to control. I think I was. I'm very you couldn't tell yet type a very, like, I need to know I'm in control personality. So I made sure even I definitely was checking more during my first pregnancy. I was you know, I actually found some blood sugar logs that I had scanned in an email to my doctor. Like, I was like, I've never logged my numbers ever. But when I was pregnant, I was diligent. I wrote everything down. I wrote down what I was eating, how much insulin I was taking, you know, change the doses as needed. But once I was on a pump, it was much easier.

Scott Benner 22:22
Hmm. Do you want a second it is hard to give yourself some insulin. Go for it. Add 20 carbs to last meal. That's some loop stuff right there. Okay. Okay. So, I find this interesting because you are very proactive and like do it myself do it yourself. But before I move forward, I understand you know what your agency's worth or your 20s

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Alright guys, I have a personal goal between now and the end of diabetes Awareness Month. I want to be personally responsible for adding 2000 new survey responses to the T one D exchange, I need you to help me t one d exchange.org. forward slash juicebox. you head over there. You fill out the survey and you're done HIPAA compliant, completely anonymous, super simple answers, and you're going to help people living with Type One Diabetes. Past participants have helped bring increased coverage for test trips. Medicare coverage for CGM changes in the ADA guidelines for pediatric agency goals. And there's more coming, I have a meeting coming up with them sooner, they're going to tell me more stuff that's been happening. You can help. They're not going to ask you difficult questions. They're not incredibly probing or too personal for just about living with Type One Diabetes. Now all you have to be is a type one who lives in the United States, or a caregiver of a type one who lives in the United States. And you're on your way, T one d exchange.org. forward slash juice box, use that link. Answer the questions. And just like that you've helped to make the lives of people with type one diabetes much Much easier. And you've supported the podcast. So if you're enjoying the podcast or you want to help, or a combination of the two, or just one, say you don't want to help, but you want to help the podcast, go ahead and do it. Say you don't really like the podcast, but you want to help. And go do it for that reason. Now, if you love me, and you love people with type one, no brainer, T one d exchange.org, forward slash juicebox. Get in there. Take the survey. Please, please, please, please, please. Thank you. Thank you. Thank you. 2000. I want 2000 by the end of November, I think we can do it. By way, mostly, I mean, you listening because I've already done it.

Nina Eizikovitz 25:55
So I am telling you, I checked my emails last night because I wanted to see what information I could pull out for you. And I have one email in 2013. When we discussed the CGM for the first time and my doctor had emailed the one of the nurse practitioners and said, a one c 5.7. wants to talk about glucose monitor.

Scott Benner 26:14
They were probably like, Oh, this lady.

Nina Eizikovitz 26:17
I mean, I've been pretty well controlled. But I will tell you a lot of that was because I was I ran low. I was both I was bowled with insulin before both insulin was a thing. We're

Scott Benner 26:27
smart because you didn't know what was happening. Right? So you were just you're basically I just think of that as tricking the a one c test. Like you're throwing off the the way it comes to that number if you have a bug Yes,

Nina Eizikovitz 26:39
in a way, but I don't remember ever being like 350 like I didn't I didn't run high. Yeah, occasionally, if I had a bagel if I had a bowl of pasta, and I didn't know how much to Bolus for, like, I just like I said, I never counted carbs. So it was like, Alright, I'm eating this. Let me like think that to do with art. And also this, this this. Alright, that looks like 50. Let's go with that. Right. And if I was a little high after, okay, I took a correction. Like, no big deal.

Scott Benner 27:05
It's interesting. The words you use, though, because back then, because I'm wondering how they compare with the words you use now? Oh, because you're just like, you know, I was harder to control that day. Like, you know, to me, like there are times when it was harder to control. Like you said it during pregnancy, which I understand like, but right. At this point now, I'm guessing you and I have not had this conversation. It's not in your text in your email, nothing like that. If your blood sugar's 150. for more than an hour, you're probably irritated by that and trying to get it down. Right?

Nina Eizikovitz 27:35
So yes and no. Okay, because I am I have a crazy busy schedule. Well, Sunday through I mean, basically six days a week, Sunday through Friday, usually I don't work Saturdays. But I'm a realtor. I'm busy all day long. So a lot of times I'll see it. I mean, I have a Dexcom. It's beeping, I also wear a headset. So every text reads in my ear, it beeps in my ear. Like

Scott Benner 28:02
It's horrifying, isn't it? How loud is it? I don't know, because I've never used the follow up. Or I've never used the actual Dexcom app because it's with Arden. But the follow app runs through your earphones so loud

Nina Eizikovitz 28:15
it is it is loud. And I keep trying to get these companies to have a volume control. Maybe you can speak to somebody, I get it, I get it. It needs to be loud for some people. But if not some people there needs to be an option. And the truth is, I'm still I'm not as private as I was when I was first diagnosed, obviously, especially once my daughter was diagnosed, I was a lot more open about me being type one. But I don't want my phone beeping all day long. Like I didn't want that. So I wear a headset for work purposes. But it's the added benefit that it beeps in my ear and it's not yet and my daughter's numbers beep in my ear. I mean, I could be beeping all day long. But alerts are going off. All

Scott Benner 28:57
I know is if I have my phone up loud because I'm listening to something and I stopped listening to it. And then that alert comes through. I think I freeze up like a cartoon character from the 60s. I'm like, oh, like you want to run from it. And you can't it's it's drilling through

Nina Eizikovitz 29:12
time. It's like to answer your question. There's some times where I'm like 151 60. And I'm like, oh, quick, let me just Bolus quickly and other times where I'm like, okay, I can't deal with that. Now. I'll deal with it later. Okay, um, so yes or no,

Scott Benner 29:23
that's interesting. It really is. It's, um, it's interesting to see how you kind of morphed because I think you made a good transition from the old days to now where I've seen people not be able to do it, just like this is how I do it. Nevermind, I can't do this or they're there. They don't understand the impact of these newer, more quick acting insulins and stuff they were using 20 years ago, and they're constantly making themselves like definitely low all the time. But it sounds like you made a pretty clear transfer to it. Now what I also

Nina Eizikovitz 29:53
I was not a fan like I never wanted to go on a pump. I never wanted to go on a CGM. I was like I don't want to be a robot. I don't want to have things that Catch to me. And then once I decided to go on a pump, I like looked at my doctor and said, like, how do people live without this? Like, what was I thinking all these years? Why don't you make me do this?

Scott Benner 30:12
later? Yeah, tell me to shut up. It's like, we're just the, you know, it's the it's the insurance piece of it too. Because Hold on one second. I'm dying here. Give me a half a second. I apologize. It's the insurance piece of it, I think. Because if it was free to try, and then there was no obligation, you could just be like, ah, didn't work for me. I think people will try it. But it's the idea of like, you have to go through this whole process, get on your insurance, and then you're on it. Like, can you imagine going through that for three months and call the insurance company back up in a month and going, Oh, funny story. I don't want to do that. You know, I think if you could make that, and some companies do it. I don't know. Like

Nina Eizikovitz 30:51
the learning curve. It just it was overwhelming to me. Like I don't want to learn something new. This works for me if my agencies would have been 1211, whatever, I would have probably been pushed earlier on. But my agencies were fine. So it was like, why do I Why do I need this but anyone out there listening? Get on a pump. Get on a CGM.

Scott Benner 31:10
No one back then was talking to you about variability either keeping your blood sugar more like stability. That kind of stuff wasn't Yeah, and I remember, I don't imagine. Yeah. Okay. So how do you I mean, you've diagnosed yourself, I'm assuming you were able to diagnose your daughter pretty quickly. But how did that go?

Nina Eizikovitz 31:26
So we were actually away for the weekend. And she went to bed, and which was very out of character for her. And I noticed like, I didn't say anything, I just like set like, in my, in my gut, like, I knew something was up. And then I was watching her all day, and she's jumping on the trampoline, and she's coming in for water. And she's back on the trampoline, and she's coming in for more water. And I like, gave my husband this look and like stop, relax, you know, whatever. And then that was Saturday. And I actually had a birthday party with friends Saturday night, and I like, I didn't want to take her blood sugar. I said, like, I need one more night of normalcy, looking back on it. And I'm like, she could have been in a coma. But it all worked out on Sunday morning. First thing I said, let's just check, no, check your blood sugar, let's just see, you know, I feel like something's up. So she was very good about it. We checked and she was like, 333 50, something like that. I called the pediatrician and I said, Hey, what do I do? Do we have to go to the hospital, because my older daughter and her hashimotos were already seeing an endocrinologist in the local hospital. So I almost feel like it was like, set up like that, like, Oh, I had this relationship already with this doctor. So my pediatrician also has a relationship with her. He's like, I'm gonna call her Let me see what she wants you to do. Gotcha. I said, okay, but please, like if I have to go to the hospital with her, like one night Promise me not more than one night. And basically, I mean, we were I think we were there for two nights. But it was a smooth process. I mean, my daughter was a rock star. She was obviously scared and had no idea what was flying. But she was great. And I think it's easier when I can, you know, show her that I do it. We call my niece and you know, they check their blood sugar's together and introduced to a whole world of people, some neighbors, like friends, people in the community that she'd never even would have known.

Scott Benner 33:19
So how available is your I cannot clear my throat. This is the end of me right here, right here. I'm so sorry. I have no idea why this happens. Like twice a year, twice a year. I'm like, I can not get my throat there. How? How available is the knowledge that you have diabetes in the house prior to her diagnosis? Like, are you like, you're not private? Or are you?

Nina Eizikovitz 33:48
So I was it for a few years. Not purposely just like, you know, when I pulled my pump out to Bolus I didn't like do it at the dining table. Like I got up, I went to the bathroom, I went to my room sit in the hallway did my thing. I rarely checked my blood sugar in the past, you know, since 2013. Like my kids were little now they're older. But really, since I got my CGM I rarely checked. Even when I was supposed to calibrate with the old Dexcom. I never really did that. So it was very rare that they saw like, I didn't have strips lying out on the counter, and little vials and machines everywhere. Like I was very contained about it. And I remember at one point, I don't know how many years ago it was. But my endo said to me, you know, like, if one of your kids ever gets diagnosed and like you've been keeping this secret from them, they're gonna think it's something that they should be ashamed of. And like, it really resonated with me. And I said, You're right, like, You're totally right. And at that point, my kids were like, probably old enough to understand or the older two or three were probably old enough to understand at that point, and I didn't like make an announcement, but I was a little bit more like, Oh, look, here's my pump and like, Oh, what's that? Mommy, what do you do with that? And we just we spoke about it a little bit. Yeah. became a little bit more public. They knew that it wasn't like shout for them from the rooftops, like when each of them learned about in science class in middle school, and I would always comes up, you know, carbohydrates, diabetes. So one of my kids would always say, Oh, yeah, my mom has diabetes, and they come home and tell me, I'd be like, Oh, great, but they knew that I didn't really care. It's just like, I didn't like want to be that, you know. I don't know what the word is, like that said case that everyone was like the pity case.

Scott Benner 35:27
I hear that I understand that. People feel all different kinds of ways about it. I get that you felt that way. I was wondering how long had her cousin had it before she before her?

Nina Eizikovitz 35:38
Um, I would say about four or five years. Okay, so

Scott Benner 35:41
that was commonplace in her life.

Nina Eizikovitz 35:44
Correct. They live out of town like they're in Florida. And we're in Jersey,

Scott Benner 35:46
but still, like it's a thing they're aware of? Okay,

Nina Eizikovitz 35:50
correct. Definitely. And we spent like holidays together, we were together and they definitely knew about it. So I think that was like a little bit of a comforting thing. I guess the adjustment was easier.

Scott Benner 36:00
Is your daughter ever around your father? Yeah, we

Nina Eizikovitz 36:03
live in we live near each other. So definitely. And you know, it was at the beginning tried to make it fun. like everyone's pulling out their pumps and saying, oh, you're going to get a pump soon. And actually, in my own community within like a few block radius there. We found like a whatsapp group. And there's a bunch of kids your age and, you know, we get them together, I guess pre COVID more than now, but really try to like, just show that it's normal. Like there's another kid in her school. And actually, one was just recently diagnosed. So that made it a lot easier. We have a really good set up with the nurses. So like she feels like even today. She was packing up her bag, and I said, like, make sure you have snack. Oh, I don't need snack. We're having a candy party today. Oh, yay. And she's like, and you're gonna let me eat whatever I want. Right? Of course, whatever you want. Just, you know, send me the pictures and we'll figure it out.

Scott Benner 36:50
What's your dad's vibe about management?

Nina Eizikovitz 36:53
Um, it he has a palm?

Scott Benner 36:58
I don't know. Marble in your voice just now you're like,

Nina Eizikovitz 37:02
Yeah, um, I feel like he's probably not as on top of things as he should be, I think is a Wednesdays are fine. I think like also, it gets busy. You know, like, the pump will be more like your low your Yeah, yeah, I'll get there. I'll get there. Like, I'm the same way sometimes. So I kind of feel like I can't fault him. But I also feel like because of the Dexcom it's like, Alright, I'm only 65 or I'm only 50. But I'm straight. It's okay. I've been 35 and I'm walking around. It's all good. It's all right. now's a good time to say nothing you hear on?

Scott Benner 37:38
Yeah, yeah. I think none of us are saying that being 35 is okay.

Nina Eizikovitz 37:42
No, it's not okay. It's definitely not okay. But I get times where you know, the pre Dexcom where I'm like, Oh, I feel a little low. Let me check. I'm like, Oh, look, I'm 35. I'm still stalking. Unbelievable. But I do not recommend it. You're

Scott Benner 37:55
fascinated by it while you're dealing with it. Exactly. I know. I already got into the like, into the mid 50s the other day. And I was like, Hey, you know, if you do something right now you can do it with food. I said, if you wait any longer, you're gonna have to do it with juice. I was like that. Those are your decisions right there, you know? And she's like, okay, and, but she's like, Alright, well, in a minute, I'm doing something. She wasn't, like panicked by it or anything like that. And she felt she said she felt fine. But I wonder what that means.

Nina Eizikovitz 38:25
Right? Well, the craziest thing is when like, even though I'm type one, and I know what a 50 or 65 is, when my daughter was first diagnosed, and she was 68. I was like, panic. Oh my gosh, oh, my gosh, she needs something Hurry up, hurry up. And I was like, Okay, wait a second. Like, I know what 68 is like, it's okay. She can use a juice box. She's gonna be fine.

Scott Benner 38:46
So that, yeah, that is really where I want to go. Next. I want to understand what the differences between having it and caring about somebody that has it.

Nina Eizikovitz 38:56
Yeah, it's a learning curve. It's definitely a learning curve. I couldn't get out of the hospital fast enough, because I just felt like they were trying to teach it. And the truth is, I will say I did because I never counted carbs before. I didn't need that learning because she went on a pump right away. Like even with my pump. I don't put carbs in. I just say two units, three units, five units, six units, whatever. Like so I've never did that part of it. So I did need that education, which would have taken me an hour probably to learn. They insisted on training classes outside hospital. And at one point I looked at them and I said we're done here like I don't have time for this, which is under control. I'll make you a deal for a one fee goes up after the next visit. I will come back and everyone agreed and we have not been back

Scott Benner 39:43
on either. They can't bill you for seven different specialties. They're just going to flip the package over and go see here were some carbohydrates.

Nina Eizikovitz 39:50
Exactly, exactly. As servings.

I like I couldn't anymore. I said I cannot sit here I don't have time for this and like I felt bad for my daughter. She wanted to get back to school. She was missing school. It was hard. And yeah, so that's how we handled that. But it's it's a different role like it's even when she goes low in school. We have a great setup with the nurses like I know people have spoken about this before. But we have a whatsapp group. The nurses have her blood sugar up on their computer screen all day. They're using nightscout. I believe my husband I get like he's a little bit of a techie. So he has set up different things. But they have it up on the computer screen. They'll leave you know, at the beginning, let last year and I'll two years ago, I was diagnosed 2019 Yeah, last school year, whatever school year they had last year before we live shut down. We started off where she went to the nurse to even though not to check because she had the Dexcom. But to right away like to Bolus What's her snack, bring it. And that's what we did for the whole school year in person last year. And it was fine. Like she was little I didn't want her putting things into the pump by herself. But we had a whatsapp group, we would always, you know, chat and text. And then this year, we decided because the truth is she was home with us a lot. So she the benefit, I guess of COVID of any benefit came out of it was that we she learned a lot because we were with her all day. So she was able to she's so quick on that pump. Sometimes I'm like Slow down, slow down and get to make sure you're not making a mistake. Like

Scott Benner 41:16
I watched Arden text the other day. And I just was mesmerized by watching her thumb fly around her phone. So honestly, those kids have skills. I don't know if they're marketable or not. But they're fascinating. Yeah, I can, I can definitely see your daughter like blowing through her pump room

Nina Eizikovitz 41:36
crazy. So the nurses were hesitant. I said, Look, we have a whatsapp group. My husband and I are very much on top of like the chat all day again, like my text pop up in my ear. So I know when she has a question or she's sending me. And what she does is she sent me a picture of the snack even though I usually know what it is because we've packed it but sends me a picture of the snack sends me a picture of what the pump looks like after she puts in the carbs. She waits for us to say okay, and she takes it. There have been one or two times where I kind of forget. And she like question mark, question mark. I'm like, sorry, sorry, you're good. You're good. But we all and it's been working, she feels that independence. Occasionally, you know, she'll start dipping down and she has this narrow straight down and the nurses get panicked. And I say guys like it's okay, like she just had a juice box, give it give you 10 minutes, like she's gonna come back up. And if she does it, she'll have another half a juice box. I don't want her to be 300 because we're overtreating. And they're very, very good about it. And the communication is great. Like, I just feel like WhatsApp groups are a lifesaver sometimes. And other times super annoying. But

Scott Benner 42:35
so is this group just your family? Or is it other people at the school?

Nina Eizikovitz 42:39
No. So it's that we actually have a few different groups have my daughter because she we she has a phone. So she we set up WhatsApp for her on her phone, my husband, myself and the two school nurses. Last year, we had the teachers on it. But this year, we felt like we didn't need to bother them with that, like if we needed them, we have other ways to reach them. So we have that whatsapp group. And then there's one with just my husband and myself and the nurses in case we have to talk behind my daughter's back about something that like is going on that she doesn't want to do or whatever. And we have that one lot of different groups going on. But for the most part, like everyone's very much on top of it. And you know, she's managing very well,

Scott Benner 43:16
I would imagine that part of the success to that is people being able to like, vibe with it, like not get too crazy or be too involved. But just realize that being able to see you say to her, Hey, what are you eating and her saying this and use it and agreeing on insulin and the nurse being able to just kind of look over her shoulder and go, okay, it's one o'clock, and she just had insulin. I don't need to be involved in this. It's good that I know. And then that's the

Nina Eizikovitz 43:41
exactly even like, sometimes, like after breakfast, you know, we try to reduce that spike, but sometimes she'll ends up trending low. So like she'll see 79, diagonal down, the nurse will What's up, should you take something and I said give her give her a minute watch. And then she hits 70, it starts beeping and she writes taking something. I'm like thumbs up great. Like she's on it. And I want to give her that independence. I don't want to hit it off at 79 let her get to 70. Because sometimes she straightens out at 77 and then ticks back up to 85. Right? Yeah, so he's like, we got to just watch it, like let it ride a little bit. I

Scott Benner 44:12
as much as I think this might not be demonstrative of a statement for some people. I think for a lot of people it is like you just have to know how to hang. And exactly, really, whether it's, you know, at a social setting or with diabetes, he needs to know like, when to speak up, window. Wait a minute, you know when to just lay back and see what's going to happen. There's a whole science that is in the science behind that around diabetes, and

Nina Eizikovitz 44:39
it changes every day. I always say like, just because it worked this way today, doesn't mean tomorrow is going to be the same thing, right? Just kind of everyday is new.

Scott Benner 44:47
I think years ago on the podcast. I used to say a lot like you have to have the balls to wait sometimes. Like right, yeah, just to kind of wait a second to see what's going to happen.

Nina Eizikovitz 44:56
So I think at the beginning that was very hard for me like I was like oh my gosh She's in the 50s Oh my gosh, oh my gosh. But now, if she has sugar in her eye, you have to give it a minute to hit like, you have to just wait it out of it. Yeah. So I've gotten a little bit more comfortable with that.

Scott Benner 45:14
I think that's a big leap for you, honestly. Because right away, like, the difference between you having diabetes, and her is you've never like you described yourself pretty clearly you were never concerned about your own safety. Right? Right. You always thought you were just okay. in control. Yeah. And but the minute I was trying to explain this to my son the other day, the minute you have a baby, the something like for some people, like a switch, get thrown in your head. And now you're just like, I am just here on this planet, to make sure that person doesn't get hurt, right, you know, and is happy. And those are my goals. I like my goals used to be so much more, but now it's just don't let that kid get hurt. Don't let them not be happy. And and it's different, isn't it? Well, there's active insulin in another person. And it isn't.

Nina Eizikovitz 46:03
When their actions are not predictable. Like she's a kid. She's like, I want to go to the trampoline. Now. I'm okay. And she, you know, slowly but surely, she knows Oh, I should probably have something before or I just had lunch and took insulin and wasn't planning on going in the trampoline. Maybe I should have a snack. Yeah, that's probably a good idea. Like certain activities, and she's learning and she needs to learn. But that

Scott Benner 46:23
unpredictable nature of it made you like anxious,

Nina Eizikovitz 46:28
not anxious, it's it goes along with it. I just feel like it goes hand in hand. You can't do anything about it. You just have to learn to live with it. It's just the truth. Yeah, it's just what it is. And even if she jumped on the trampoline for an hour today, and she went down, whatever, tomorrow, she could jump for the same hour and not move like it's just whatever she ate before. However insulin she has on board. It's all going to be different every day and Mary's right.

Scott Benner 46:54
And there are some foods that fight off the trampoline. And there are some that don't. Right. Yeah, that's fun. Yeah,

Nina Eizikovitz 47:00
there's other ones. One other thing I wanted to just mention, I don't know, I, I will say I have listened to almost all of the episodes. I'm a little bit behind.

Scott Benner 47:08
Thank you. But

Nina Eizikovitz 47:10
I'm getting there. And we're we're Orthodox Jews. So we have like a Thanksgiving meal. Well, really to every Friday night, and every Saturday lunch. So in addition to all the Jewish holidays, so I felt like that was like a something I wanted to just discuss, and mentioned how you know, people go crazy about Thanksgiving and Christmas and all those things. And I'm like, we do it every week, twice. And it's it's a lot. It's a lot of food. It's a lot of unpredictability, it's we you know, again, pre COVID we were at other people's houses, I didn't know what they were serving. You don't know what's coming out next. You kind of have to just roll with it,

Scott Benner 47:51
huh? Well, is there I am going to go backwards. Before I do anything. Is there any through line with heritage and type one?

Nina Eizikovitz 48:02
Like? I think so. Not that anyone's ever mentioned here,

Scott Benner 48:06
because I've been googling while you've been talking over the last hour, and I don't see it anywhere. And I wasn't sure of your

Nina Eizikovitz 48:16
like there's Ashkenazi Jewish like genetic testing that people do sometimes before they get married and things like that. I don't think that's mean. I'm 99% sure that's not part of it. So I don't think that's something that would come up.

Scott Benner 48:27
I tried Hasidic. And I tried orthodox. And I don't see any Google searches that put the two together. Before you before you said you were orthodox, I was just going through my like, my Jewish Rolodex in my trying to like, think of all the groups that I can think of. And there's there's no tie that I can find that that says that. So I was just wondering of it. But it's

Nina Eizikovitz 48:49
amazing. The resources like even like Passover is coming up. And there is a lot of matzah, carbs, wine, grape juice, like as part of the meal in addition to all the other food that's consumed in that like two to three hour period. And there's groups, there's WhatsApp groups, there's websites that break down the carbs and give alternatives and like the resources that are out there today are unbelievable.

Scott Benner 49:12
That's excellent. And so it's a big meal. A big carby meal twice a week. Yeah. And you don't have any trouble at all.

Nina Eizikovitz 49:22
I mean, again, does it have to be a big carb meal? No, you choose what you put in your mouth. But you're sitting down for basically two Thanksgiving dinners twice a week, or dinner and lunch. And it's just it's just a lot. I mean, again, you learn how to deal with it. Like I said, I don't count carbs. So like, I'll sit down and I'm like seven units like that's what I need. And sometimes it works and sometimes I think it works and then an hour or two later I there's a spike and and honestly those are things that I learned from my daughter, like protein spike, what is that about? And I hear you and Jenny talk about it. And I'm like, I've been doing this for 23 years. I I eat string cheese. I Turkey never thought twice about it. And I don't know that it always makes me rise. I'm pretty sure that there were times in my life where I've had, like I was on no carb diets, and I barely took any insulin. Yeah. But for some reason, at some times, there is a little bit of a spike.

Scott Benner 50:14
Well, and even if you're on a low carb regimen, the spike, you know, you should make quotes around like might not be 300 like you

Nina Eizikovitz 50:23
can I still have that Basal going. So it could be that the basil is just covering whatever spike there is,

Scott Benner 50:27
could be I you know, you don't see it all the I will say there are some things that without fail, I see an art and like French fries, from certain places, going to make her blood sugar go up like an hour, an hour and a half later, like, just going to that happens over and over again. But you know, the same potato not fried? I don't have as much trouble with,

Nina Eizikovitz 50:51
right, I know, we've learned I feel like you know, Dunkin Donuts, we've learned you want a bagel and you want a donut, no problem, we have this, this is what you need before, this is what you need during this is what you need when you finish. And like for the most part, we have it covered.

Scott Benner 51:02
You figured it out. It's trial and error. Yeah, listen, if you're not willing to take a couple of swings and Miss, you're not going to figure out a number of these things. It's, it's why you'll always hear me tell people you know, the the most common question that I get is either How much? Or how long? Everyone wants a number? How long should I do that? For? How much should I do? I don't know, like, try, you know, like, try a number when it works. go, Wow, I can't believe I got it the first time. Or if it doesn't work, make an adjustment and do it again. And that is incredibly difficult for so many people because they just are not empowered. And I hate to use like a cliche word like I feel like I'm about to say think outside of the box. But most people are not empowered to make decisions about their diabetes. And therefore they stick with this very basic, like whatever they got told first. And then when it doesn't work, they go, Oh, wow, diabetes is really unpredictable, isn't it.

Nina Eizikovitz 52:01
But even with the knowledge that I have, when my daughter was first put on the pump, and they put in her, you know, doses and everything, I was not I wasn't touching that. And I'm super confident in the care for her and what I do for myself, and I'll change my basil and my Bolus is constantly but with her, I was like, I'm not touching that. And then really, at one point, I'm like, this is ridiculous. What am I waiting to talk to the nurse for? Like, let me just so I took a screenshot of what her current regimen was like what the current setup was. And then I said, I'll play with it. Worst case, I put it back tomorrow. Let's see what happens. Yeah. And wouldn't you know, it fixed the problem that we were having. And like, once I did it once and I got comfortable with it. I don't have a problem playing with those things within reason. Just to kind of Oh, she's spiking from between two and 3am. Okay, let me raise her basil at midnight, like whatever it is. I'll play with those things a little bit to get it better. And if not, you ask for help. That's why those doctors exist besides the prescriptions that we need to get.

Scott Benner 53:00
I just did. While while we've been recording. I did a bump of like, you know, I talked about bumping and nudging for me but I just did it like Arden had something to eat. I was unaware of. She took care of it. I saw the insulin go in. And I thought, Oh, she must have eaten something was just my thought. And about an hour less than 45 minutes later, she started to drift up. I said, Did you eat something? And she said, Yes, you did a good job with it. I said, I think maybe it needs a little more. So we pushed down a little more. It didn't work. It tried to keep going back up. So we just, you know, we put more on it and it's leveling off and we'll come back now. I don't I don't think we are where we are without those little ideas. And I just think that those little things that you can do that stop you from staring at a blood sugar that it's climbing 121 4160 and you're just like, oh, maybe it'll stop like it ain't stopping. You know, you know? Yeah, when you do something about those little things. That's where Arden's a once he hits, like I'm waiting for people who are listening to realize that there's nothing magical going on in this house that has Arden's a one c steadily in the fives I think for like seven years now. Wow. You know, and so it's just, it's just we're meeting the need your body. Your body's telling you if you have a CGM it's telling you that you do not have enough insulin here

Nina Eizikovitz 54:30
it's not a set it and forget it type of situation never you can set it but you can never forget it and you have to constantly be adjusting for the needs. You know, as she grows the hormones all those things like I know we're gonna have to be on top of it. Sometimes it's like we have two or three nights where steady line straight as can be. And then the next night I'm like, what, where did that 200 come from? Like, we were just 118 out of nowhere, but then the next night we're

Scott Benner 54:57
all the hormone stuff stocks. It's so terrible. It's just so much extra work. And I swear to you, I have a boy and a girl. Hormones hit boys. Definitely it makes them Superman in their minds. They're just like, I don't know if you have any boys, but three girls and a boy. Yeah. How old is the boy? Almost 14. It's just about starting to happen now. And like, but it gets to like, I know everything I can do everything, you can't stop me. I'm like a locomotive like that feeling from them. And that's the hormone thing. And then there's, with the girls are just, it's more of like, it's not like the emotional stuff. And the and the, you know, the stuff that you see in blood sugar that you wouldn't see if they didn't have type one. But, you know, when somebody's blood sugar is low, and they're feeling emotional. And you're like, Hey, you know what I think we should do? And they're in the middle of wanting to feel more independent. They're not like, Oh, no, please tell me what is it? You think we should? It doesn't work that way. Don't leave me alone. Oh, okay. Great. Hold on. Yeah, I don't know, which I prefer. Because both sucks. Like, if somebody if listened to laying out parenting could be done very simply, I would tell you like, right until they start turning into adults. It's kind of great. And then it's almost like you have to live through this part to get to the part where they stop, like getting, you know, a barrage with all those hormones. I can't wait to see if I still like them when they get old. Or if they like me. Yeah, the best parts in the beginning, we should all just like, like, take in, like a homeless kid. And then get them to the hormones and then give them that I don't know, give Is there someone to give it back to I don't know, I'm just saying there's a great time for children. And it's from when they're born until whenever that thing starts. And then my God, here it comes. But and then it impacts the blood sugars in the same way. But your sound like you're doing really well with your daughter at the moment like, and

Nina Eizikovitz 57:00
your last day when she was six. I'm pretty happy with that. And I also like as much as I'm a control freak, in many ways. Okay, if she rises to 200, she's not there for an hour, she's never sit mean, we don't like her to be sitting at 200 at 180, whatever, or even higher for a long period of time. But sometimes you're like, you know, you just gave her insulin, you know, she's eating and like, she's gonna come down. And if I touch it, she's gonna drop. So sometimes I let it ride for a little bit. And then I'm like, okay, not moving. Let's go. We got to bring this down. Yeah.

Scott Benner 57:33
And that that comes with that comes with experience to like being able to see the difference between like, if I let this go for a little it's going to, you know, there's enough insulin in there to take care of it. I'll turn around right where when you let it go and realize that your pumps site is going bad. You didn't realize it?

Nina Eizikovitz 57:48
Oh, Weiss was amazing. One night last week. She was like totally like 95 before bed. She had had a snack. And I said okay, like, let's see if she took enough. Let's see what happens. straightline amazing. And then she's 125 diagonal up, she goes to 144 straight up. I'm like, what is going on, like out of nowhere. So I go to and she has she's on control IQ. And we do not use sleep mode for the most part. So it does Auto Bolus does auto you know, increase the basil. But at the same time, I sometimes will have to go down and still do my own thing a little bit. So went down to my bedrooms upstairs, she's downstairs, I go down. I'm like, Okay, let me the pump gave her point to five. Let me give a little bit more, give her more. Come back up. And I have this is one also a great tip. I'll just interrupt myself. We have in our bedroom, like a computer screen that we have with our number up all night long, like through night scout. So sugar mate, night Scout, I think at night scout. And that way, like I roll over in the middle of the night, I don't have to pick up my phone, it makes noise and it's like this big bright number. I find that very helpful. So I see that her number is still going up. And now she's like 202 hours up and like also on half asleep at this point. It's like one o'clock in the morning, two o'clock in the morning. I'm like, forget it. I'm just changing her pump like it was fine all day, something must have happened. She must have rolled over on it. So I prepare the cartridge, bring it downstairs. And like I rolled her over and I'm like, what, what her pump was not connected. I must have disconnected it somehow. And I'm like, Are you kidding me? So I've been bolusing the insulin drop dripping off onto her bed. Oh, okay. So I was happy. I didn't have to wake her up because she would never want me to change it while she's sleeping. That was a deal we made. I will never fingerprick or change pump unless I wake her first. So I was happy that I caught it. I was like, how did that happen? And then of course in the morning I'm like, did you put it back on after you shower like we're going through this whole thing and you know, she probably just disconnected in her sleep.

Scott Benner 59:52
Yeah, I have to say that if it wasn't so late in the episode, I would stop right here and do an ad for Omnipod

Nina Eizikovitz 59:57
Omnipod. I know

Scott Benner 1:00:02
Well, it's you know, what you just described is what some like lifers will tell you the reason why they don't want to pump because if that thing gets disconnected, I'm going to go into DK, which is exactly what would happen to her if you didn't if you weren't watching her.

Nina Eizikovitz 1:00:14
Honestly, I feel like worst case scenario, if it would have gone the whole night like that, I don't know that she would have been 400. Like she had insulin in her. Again, I don't know. I just feel like by morning, we would have realized her she got up to go to the bathroom in the middle of the night, she would have seen whatever it is, but to me, there's always a reason. Like, if it's not working, either the site is bad, or it's disconnected or the insulin is bad. So after a little bit of like, there's always a certain like limit where I say, okay, we've Bolus a couple times the arrows aren't moving. She's not budging. We got to change the site. And if we change the site, does that like take the site off? And I'm like, it's perfectly straight. It's not bad, like, great. Is it the insula Now, let's change the insulin out.

Scott Benner 1:01:01
So I've come to think of it as is the insulin doing what I expect it to do? Like, am I getting the response that I that I expect based on my history, like I Bolus here for this number in this situation? Here's what I expect to happen next. If that's not happening, then I start thinking is the site okay? I have to be honest, I never really think is the insulin okay. Like, I know, I know, people are like, my insulin went bad. But that seems so like. I don't know, that seems like the last thing I

Nina Eizikovitz 1:01:33
know, I never had like, before my daughter was diagnosed, I don't think I ever would have thought of that. But now I feel like you're grasping at straws. You're trying to figure out a reason like, well, if it's not this, it's not this must be this, it must be the insulin then like, and sometimes I'll change it all. And then before I even like, click it back in, double arrow down, I'm like, go see it was working and just needed another 15 minutes.

Scott Benner 1:01:56
I feel like I'd love to be a therapist right now. And just ask you, Nina, why do you love her more than you love yourself? It is fascinating. I, this podcast has taught me a lot over the years. And one of the things I have learned that I think is absolute rock solid, I will never, you'll never be able to tell me differently is that when people feel like they're doing things for other people, it often makes it I don't know, it makes it resonate for them. It makes it important for them. It makes them prioritize things differently. The amount of like young girls who come on here, and they're like, Oh, 1718 2023, I didn't really take care of it. And then I met someone and I started thinking about having a family and then I got my agency together. Or I got married and then you know, I didn't want this girl to have to worry about me. It's I had a baby, you know, and I wanted to do it. It's fascinating how, like, I don't like I was kind of joking. I don't think we all need to go to therapy. I just think it seems to be a very human thing, that when it's for you, you know, you'll keep yourself alive. But when it's for someone else, it just ratchets things up. It's very fascinating. It happened to you.

Nina Eizikovitz 1:03:16
Yeah, I mean, look, I think I was always in control. But I wasn't like obsessive about it.

Scott Benner 1:03:22
And you went from the lady walking around Israel with rubbery legs to the lady with a computer screen in a room that has your daughter's blood sugar on? Well, I guess from your perspective. When you say it like that, yeah. Well, you mean like when I'm paying attention all the details? Yeah.

Nina Eizikovitz 1:03:37
I also but but that's what I'm saying. I learned more about how to care for myself. Because of how I'm caring for my daughter. Like, I have changed a few things. Like instead of me letting like my, my low is at 70 my highest now I think at 180. And again, there were times maybe my high used to be a 200. But there were times where I just like it was beeping, I'm hot. Yeah, okay, fine. I'm not low, I'm not gonna pass out. It's fine. It's fine. I'll deal with it later. But now I try not to do that. I really try. One of the reasons that I haven't switched on the Medtronic pump is because I can do a remote Bolus to me that is I would love for and I know Omnipod is all remote Bolus, I think from what I understand.

Scott Benner 1:04:18
By just like, you don't have to actually pull the pump out to do it correct.

Nina Eizikovitz 1:04:20
Like you don't have to pull out a device. It actually the Contour. Next One meter is also the remote. Really, it links up. It's very cool. Um, it links up with the Medtronic pump, and you Bolus right from the meter.

Scott Benner 1:04:34
Okay, so on the pod right now, in March of 2021 has like a little, like PDM thing that's not connected to anything and it's like a looks like a little cell phone and you pull it out, right? Just do the thing. I think that most of the companies are trying to get to a cell phone control, right?

Nina Eizikovitz 1:04:53
I'm waiting for that day. Yeah, just newer devices, fewer things. Hopefully less noise guys, listen to me, please.

Scott Benner 1:05:01
The FDA is not gonna let them take the beeps away, I don't think. But I hear you like, sometimes you're like, Yes, I heard it.

Nina Eizikovitz 1:05:07
Just Options, Options for a little bit of a lesser despoil, maybe like something,

Scott Benner 1:05:12
I always talk to them about, like, I always bring up like all the companies that I talked to. I'm like, you know, if you ever use like Photoshop Elements is a good example. Yeah, you open it up at the top, across the top, it says something like beginner intermediate expert, like that. That's amazing. And that would be awesome. And when you click on one of the other, it simplifies the app, beginners get a more simplified app medium gets a little more tools expert gets full control,

Nina Eizikovitz 1:05:39
you're a beginner, you need loud noises, I'm all for that.

Scott Benner 1:05:43
You know, they have again, the FAA is not gonna let them. But I hear what you're saying, Well, you can't tell you can't tell somebody, this thing is gonna tell you if your blood sugar gets too low, except you can shut it off. Right,

Nina Eizikovitz 1:05:53
I get it, I get it. Yeah, you

Scott Benner 1:05:55
can stop wanting that.

Nina Eizikovitz 1:05:59
That remote Bolus feature is a huge plus for me, because I just two seconds. Again, because I'm not so public about it, I'm not going to just pull my pump out and start Bolus in or even pull out a PDM and start Bolus. And this is literally like, you know, the size of the meter. It's a little rectangle, it's nothing.

Scott Benner 1:06:15
There's like a little remote control for it. Yeah. And it's

Nina Eizikovitz 1:06:19
just like, no, very discreet. No one knows what I'm doing, you know, two seconds, and I'm done. So I can bring that 180 back down pretty fast. But you know, assuming that I'm not doing 10 other things at the same time,

Scott Benner 1:06:29
but that Medtronic pumps, not a loop. So you're using a Dexcom. With that. It's not a

Nina Eizikovitz 1:06:33
it is a loop. But I wouldn't give up the Dexcom for anything. Okay, it doesn't work with Dexcom. It has its own sensor that I was my daughter and I were never a fan of. So I am not looping and my daughter is looping. And I'm kind of jealous of her looping because I see what it does. And I'm like, that would be amazing if I didn't have to think about my 170 because it's being attacked on its own.

Scott Benner 1:06:55
So your daughter's using control IQ with tandem. Why don't you just switch that?

Nina Eizikovitz 1:06:58
Because tandem doesn't have a remote Bolus feature. So tandem when you're ready for that? I'm on board,

Scott Benner 1:07:04
you are very fickle.

Nina Eizikovitz 1:07:07
I am. Yeah. You know what, though, it works for me. This is what I keep saying because my doctor also keeps pushing me go on tandem. And at one point I had an insurance issue when they only cover the Medtronic and I when my daughter was diagnosed, I fought for nine months to get the tandem covered. We finally won. And three days later, that insurance company covered tandem. You kidding me

Scott Benner 1:07:30
before we move on? Because I have another question for you. I know we're up on time. But I have one more question for you. But redo Can I make an observation, please? Okay. You told me that you fought getting a pump forever. And then you had your reasons why, then someone you did it. And then you thought, why did I never do this before? And now you're telling me because of the way the thing you pull out of your pocket to give yourself insulin, you don't want to move to an algorithm. I just want to say this seems like a repeat of the last thing. You are 1,000% correct. That's why the podcast is great people 1,000% correct. But again,

Nina Eizikovitz 1:08:07
there's a there's a limit to everything. And there's only so much I'm willing to change. But it does come down to the noises like it's not just about taking the pump out that tandem pump beeps a lot constantly. Like because I guess because I'm not looping. I guess if I was looping with the Medtronic, it would also be blocked.

Scott Benner 1:08:27
I don't know why. I'm trying to figure out why the beat I don't I've never like used the tandem pumps on that

Nina Eizikovitz 1:08:33
way maybe because the way we have my daughter settings if she's going hi beeps that she's going look I want her to know in school like she's not pulling it out to check every day. She only knows she's low when it beeps. I

Scott Benner 1:08:43
don't know if that's the pump that maybe that's her settings. What's her high alarm at?

Nina Eizikovitz 1:08:47
Right. So I'm saying maybe that's why she's beeping so much. She's also at 180

Scott Benner 1:08:51
Hmm, oh, Arden's high alarm set at 120 on my phone.

Nina Eizikovitz 1:08:54
Yeah, I know, I know, Scott, we all can't be like you.

Scott Benner 1:08:57
Well, what do you mean, there's nothing to be like. It's the same thing. And one ad is 120 the cell

Nina Eizikovitz 1:09:02
but honestly, like if she was her high alarm was at 120 she would be alerting all day long. Like I can't have a nine year old and third grade like he's dead on top of it. As she gets older, I think we'll we'll change those things and try to have a little bit of tighter control. But at some point, like I my feeling is you got to let a kid be a kid within a certain range.

Scott Benner 1:09:20
So I want to say that I agree with everything you said, except for the idea that a lower threshold means it'll be forever I think a lower threshold changes your actions. And then those actions stop you from reaching the threshold. So it doesn't, it doesn't be forever it beeps until your it beeps until you start

Nina Eizikovitz 1:09:44
with 120 or one at the point

Scott Benner 1:09:47
it's not even that it's more like you, you Pre-Bolus a little better or you cover the meal a little better. Like once you once you learn like it's not learn like cognitively learn. It's the idea of If I do this at a meal, I never get the 130. So I'll just make sure I do this the meal, then I don't get a beep. And then that becomes commonplace for you. And then before you know it, there's no beeping, and there's no rising.

Nina Eizikovitz 1:10:13
Well, then I need a one on one. I need some more coaching, then

Scott Benner 1:10:17
I'm busy noon, I cannot

Nina Eizikovitz 1:10:20
get enough on your

Scott Benner 1:10:21
plate. Leave me alone. Okay. Now I know what I wanted to. I wanted to ask you. Because you kind of like said it. And we never got back to it. I just want to understand at the end, it's kind of helpful for me. How did you find the podcast? You just searched for it? Or somebody told you

Nina Eizikovitz 1:10:36
I think I started looking for parent groups on Facebook. Like while I was sitting in the hospital that first night. And I was just like, trying to find something to like, you know, calm my fears and like some normalcy and like other people out there. And I'm one of the threads someone mentioned Juicebox Podcast and I said like Juicebox Podcast, what is that? And I'm also what a cute name. Thank you. I loved it. And right away, I found your Facebook page. I didn't start listening to the podcast probably for a while after just because I needed like, I didn't have free time. Every one of my free minutes was busy on you know, doctor's appointments and learning and regimen and everything. But I think once she was back in school, I started listening. And I remember like, every my kids would make fun of me, you know, bumping nudge. Okay, bold with insulin. Okay, stop. We know that with your podcast, we know. But I really tried like i was i was i was it gave me the confidence to be bolder, even though I did it to myself, I always did that I had no problem. Big deal. So if I go a little low, I'll take some juice, I'll eat some sugar, big deal. Like I'd rather be a little on the lower side than be high. But I don't think I would have had the courage to do it. If I didn't listen to the podcast and hear everything you say and your guests say and it just gave me the competence to say okay, and I actually had my daughter on a Dexcom immediately because I had an extra Luckily, I had an extra transmitter and sensor in my house. Yeah. And I was like, I was I was afraid to put it on her. Like I said to the doctor, like this is okay. Right? Like, I could just do it. Nothing is good. Even though I know you put one on like, of course, you could just do it. But I just I was afraid to make a move without a doctor telling me it was okay. I

Scott Benner 1:12:14
wonder if you realize how valuable this conversation has been to just to hear you Dr. Jekyll and Mr. Hyde through the entire thing. Like and I don't mean that in like a funny way. Like, I really think for people listening, I'm happy. Yeah, it's incredibly valuable. Like you have this kind of bold I can do it. This is not a problem better low than high attitude for yourself, then your daughter gets it. And you're the incredibly, you're incredibly opposite of that just at

Nina Eizikovitz 1:12:41
the beginning. Yeah, I just needed that like adjustment period. And honestly, I'm putting it out there like, um, feel free to share my contact information. Like I love talking to parents who need that, like, just diagnosed like, Is life ever gonna get back to normal? Because like, I've been there you have it as a kid. And as a parent,

Scott Benner 1:12:59
I feel like you're undervaluing the reach of this podcast, we're not going to share your contact information.

Nina Eizikovitz 1:13:03
Well, I'm not saying share it right now.

Scott Benner 1:13:04
But But anybody reach out?

Nina Eizikovitz 1:13:06
I really am happy. I'm not a nurse. I'm not a doctor. I'm not giving medical advice. But I just I know what it's like to be there.

Scott Benner 1:13:12
Are you in the private Facebook group or just the public one? I'm not sure we'd love the private one.

Nina Eizikovitz 1:13:19
Oh, well,

Scott Benner 1:13:20
then it's Juicebox Podcast, type one diabetes, you have to answer a couple of questions to get into prove your one that one that one's kicking. It's like up to 10,000.

Nina Eizikovitz 1:13:29
I'll double check. I think I am in the private one. Next. I do remember answering questions like are you a parent Do you have and I was like, I don't know if there was an option for both. And I was like, which one? Do I

Scott Benner 1:13:38
pick? Yeah, go there. That Yeah. Right. And my parents were more

Nina Eizikovitz 1:13:42
personal type. But I think I picked a kid for that one. Because that's what I discovered it.

Scott Benner 1:13:46
Can I be both? Right? I didn't realize I had to put that in as I'm not so active

Nina Eizikovitz 1:13:50
on it. Like I really my My days are consumed with working.

Scott Benner 1:13:55
If you want to meet people there that that that is an incredibly active page.

Nina Eizikovitz 1:14:00
Right. All right. I'm happy to be of help if I can't anybody. Been there, done that.

Scott Benner 1:14:03
I appreciate that. So the podcast just kind of gave you confidence.

Nina Eizikovitz 1:14:07
Yeah, it really just made me feel like it was someone whispering in my ear. It's okay. But only when I had the Dexcom. Like, I never would have done anything without being able to see that number. Like there when that Dexcom outage happened. I was like, paralyzed. I was how are you going to sleep tonight? What are we going to do? And then I started thinking like, How did my mother do this? Like my brother was diagnosed almost at the same age. How did she send them on the school bus? Yeah,

Scott Benner 1:14:32
they didn't. He didn't know anything was and she's the older and so on.

Nina Eizikovitz 1:14:35
Yeah, like I just was like, how do you that CGM is just a lifesaver in my mind. And anyone who has the ability to get one who doesn't is really just missing out? I think that you don't know what you're missing until you get it

Scott Benner 1:14:48
says the lady who won't move to an algorithm because

Nina Eizikovitz 1:14:52
I'm ready to move. I just need them to tweak things. Listen, I've spoken to the pump companies. They don't want to listen to me, but I told them What I need if

Scott Benner 1:15:00
these large corporations would just do what you asked them to do, you could loop no problem. I'm I'm fascinated how the word loop has become like Kleenex. Yeah, because your daughter's using control IQ, somebody who's going to be using by the time this comes out people will be using on the pod five. These are just different algorithms made by different companies. But somehow the word loop has become synonymous with using an algorithm based system. It's it's very, very interesting how but

Nina Eizikovitz 1:15:31
I do remember years ago, like someone telling me you can hack your pump. And you could make it this is before anyone really came out with an official loop? And I was like, What? Why would I want to mess with that? Like, I'm good. Everything was good.

Scott Benner 1:15:43
I can't tell you how well it works. It's really, it really works great. It just really does. I'm,

Nina Eizikovitz 1:15:50
I'll get there. Yeah,

Scott Benner 1:15:51
I've I think there's a time where people will hear this conversation. And it won't be that far in the future. And every major company is going to have an algorithm based system that's going to make adjustments to your blood sugar. And forward to that time, and most people I think, who can get their settings? Right? in those systems are gonna see a one season the six is probably with very little trouble.

Nina Eizikovitz 1:16:20
Right? It's amazing. I mean, technology has come far.

Scott Benner 1:16:24
That's my guess. I don't know if I'm right or not. But that that is my guess. And I'm excited to say it. That's for certain because even your daughter who, you know, like, let's be honest, she's only had diabetes for a year and a half. She's 15. Like she's got her nine. She's me nine. She's got her. She's got her agency at a at a six. You know, you take that algorithm from her. I bet you she's not a six. Do you think? Oh, for sure not? Yeah. So this is this is a super exciting time for people using insulin. It really is. I'm thrilled you did this. You were terrific. Oh, thanks so much. I felt like you had you knew what you wanted to say. And you're in control of it. And it makes it easier for me. So thank you for having no I really, I can't tell you this is a it's easier to talk to people from New Jersey for me, because you're talking fast. I'm talking fast. Nobody's like, please don't tell me to slow down. I was trying so hard. No, no, I don't mean fast in a bad way. Like, like, we're if I had something to say, and you were still talking. So it's a really interesting kind of East Coast thing, right? If you're talking, you're going along, making a point. And I feel like oh, here's where I'm going to say what I'm going to say right, this fits, and I'm wrong. You just keep talking people which is great, because I do the same thing. People from like, other parts of the country stop. And they're like, Oh, I'm sorry. I'm like, I might, in the back of my head. I'm thinking to just keep talking. Like, like I was wrong. Let's get past it. Like I tried to jump in at the wrong spot at school, but they'll stop that like, Oh, I'm so sorry. I'm like, No, it's okay. Go ahead. Then they're polite. They're like, No, you go and I'm like, What the hell? Like, the roll together? Yeah, you couldn't make it three blocks in Manhattan. What do you think of that? Just steamroll, keep going, you got a thought Keep it up. I screwed up. And and then I feel bad when I do it. Like when, you know, like when I'm talking and I don't stop for a second. Some people don't have the ability to jump in. And I see conversation is like a very like, like fluid back and forth thing. But there are some people who think of it as like, you talk until you're completely finished talking. And then I'll talk until I'm completely finished talking and I'm like, Oh, geez, I don't know. Like, I like the I liked the banter. So thank you. I thought it was terrific. My pleasure.

I knew I was going to enjoy talking to Nina from the very first sentence that she spoke. She gave me her birthdate or something and left the math up in the air and she goes, I'm gonna let you do the math. And without pausing, she then told me the answer and I thought this is gonna be fun, and she did not disappoint. Thank you very much, Nina. I'd also like to extend a huge thank you to one of today's sponsors. g Vogue glucagon. Find out more about chivo Kibo pen at G Vogue glucagon.com Ford slash juice box, you spell that? g VOKEGL Uc ag o n.com. forward slash juice box.

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#549 Pregnant in Slovenia

Katy has type 1 diabetes.

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

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to Episode 549 of the Juicebox Podcast.

You are going to enjoy today's show, I interviewed Katie while she was pretty pregnant. Today she has a baby. At the end of the episode, I'll tell you more about that baby. For now remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Also remember that you should consult a physician before making any changes to your health care plan or becoming bold with insulin. This one's fun. I remember we did this with the video on which I don't often do. I remember Katie saying she hadn't had much interaction with adults. And we had a really good time chatting. Oh, and she's living in Slovenia right now. which sounded exotic to me. Of course, I am a person who when I hear you live in Canada imagines you're being killed by a bear. So I don't have a world traveler view.

As I reflect on what I've just said, I don't even know if I count as an adult, so maybe she hadn't had any contact with adults.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter, I want you to go to Contour Next one.com forward slash juice box to learn more about the most accurate blood glucose meter that I've ever used. The show is also sponsored today by touched by type one, find out more about them at them that does not say them correctly. Find out more about them at touched by type one.org or on their Facebook or Instagram pages.

Katy 2:03
My name is Katy, I'm 32 years old and type one diabetic. And I'm seven months pregnant. And now I'm currently living in Slovenia.

Scott Benner 2:14
Nice. Okay, so Katie, when you think you're turning your head, and so you're like, Hey, I'm Katie.

Katy 2:23
Ah, okay, the microphone isn't as good. I'll just hold it. This is better.

Scott Benner 2:26
Wow, that's amazing. If you if you feel like doing that the whole time. Definitely do that. But will will will, will leave your microphone training in the episode. So how would you say you're 32. And you were diagnosed when?

Katy 2:39
When I was 1111 2000

Scott Benner 2:43
years ago? Yeah. See how quickly I did that. impressed at all?

Unknown Speaker 2:50
mazing.

Scott Benner 2:51
No, you weren't. I was I think that's the problem is that I was like, that's 21 years ago. And then this little like confetti pops off of my head. And it's like, you did it. I don't know what's wrong. I don't know why my brain doesn't grasp math the way it should. Anyway,

Katy 3:05
well, this is fairly simple math, right? It's 2021. But still,

Scott Benner 3:10
why don't you're saying but I'm just impressed it like it because you don't. Alright, look, not to get on a sideline, but my brain takes out a chalkboard and I can visually see your age. And then that happen. And then it goes oh, you just take the one off. And then there's two here. So that's 20. And then that's one. And they literally happens like that in my head, which is why I'm not good at geometry and algebra and other things. Because I think I would need more of a grasp of Math and Math to get through that stuff.

Katy 3:34
But it just sounds like you're kind of a visual person.

Scott Benner 3:36
You thanks. So yeah, you're probably right. Okay, long time then is the answer. you're originally from California. Yes.

Katy 3:45
Originally from kind of the well, originally from the Bay Area, and then I grew up in the Sierra Nevada foothills.

Scott Benner 3:53
Oh, that sounds lovely. Was it? Yeah. Yeah.

Katy 3:56
It was a small I was in a small town. Really beautiful.

Scott Benner 3:59
That's amazing. I wish but you don't live there anymore. Now, wisely. I

Katy 4:05
live in Slovenia, in the capital city Say that one more time for people. Currently I live in Slovenia. It's a in Europe. It's between Italy and Croatia and Austria, kind of

Scott Benner 4:19
nowhere near the foothills. And

Katy 4:23
we have some Alps. nearby.

Scott Benner 4:27
How did you end up there?

Katy 4:29
My husband is a Slovenian guy. So he was doing an internship in California in Silicon Valley. When we met about eight years ago. And now we've been living here for about a year and a half.

Scott Benner 4:45
And he said, I have to go home. And you were like, I'll go with you how long you've been married.

Unknown Speaker 4:51
We've been married about three years. I think

Scott Benner 4:54
so he springs this on you after you're trapped? Is that what you're saying?

Katy 4:56
No. I actually wanted to No, this is always something that we kind of planned on. That was just a matter of the timing. Gotcha. Well,

Scott Benner 5:05
that's, that's really cool. I mean, it's adventurous at the very least to. I mean, it would have been adventurous to move to Arizona in my opinion.

Katy 5:14
And you don't know me, but it's very adventurous for me. Also, I'm not a huge risk taker by nature. So

Scott Benner 5:20
that's pretty cool. And it sounds like it's going okay. Except for before we started recording the mail system in Slovenia, not good. We start with the mail system. Yeah. But that's neither here nor there. So how, yeah, so you've got diabetes. As a child, you grow up with type one being on your parents situation, imagine you went to college, and then got a job, you're on your own, and then you leave the country. I so I, before we dive into why you're on the show, I kind of want to start off with how that changes, like what happens when you leave one country and go to another? How do you manage all that?

Katy 5:56
The diabetes component or

Scott Benner 5:59
like get everything, no getting your stuff, like getting your, you know, your diabetes, tak and like, all that.

Katy 6:05
Yeah, that was kind of a scary aspect. But it turned out to not be as difficult as I thought it was going to be. The hardest part was just making sure I would have enough supplies in this interim period before I had insurance over here. But once you have insurance over here, which you get, as soon as you are registered as a resident, even if you're a temporary resident, then you are covered. So it's not a problem anymore. And it's like a universal healthcare system. So it's, it's really a lot nicer than the situation in the US. But I did stockpile supplies before coming. So I plan to have I think I had between three and six months of supplies for everything. It wasn't it wasn't so crazy, because I've had doctors in the US also, when I did, I did a three month trip to Southeast Asia and I did a three month trip around the US. And doctors are willing to help you out to cover an extra supply gap. Yeah. Loads during this kind of thing. Did you

Scott Benner 7:29
end up needing all of it?

Katy 7:31
Sorry, did you?

Scott Benner 7:32
Did you really end up needing all that backlog that you had? Or did it turn out to be more than you?

Katy 7:39
It was I was happy that I had as much as I did. And I didn't use it all up. But it was not a lot of extra wiggle room. By the time the insurance came through. There was some bureaucrat bureaucracy and I will say it's really helpful to have my husband be somebody who speaks Slovenian to help me navigate the system. Because if I were to just an American speaking English and trying to do offers

Scott Benner 8:06
me once again, this never happens. Hello. I'm recording What's up? No, I'm not kidding you. Wait, you left something in here? This is funny. Hold on was What do you say?

Okay, good luck.

So not Hey, I'm sorry, this isn't on the calendar. But I'm like it is on the calendar. No, it's not. Like it was almost like I'm not bothering you because this isn't on the calendar. And I was like, Yeah, but it is. Not only that, I understand that. Well, not only that 45 minutes ago, she was in here and I was like, Hey, I gotta record sit and she was like, Okay.

Katy 9:05
Okay, well then that's less understand.

Scott Benner 9:09
That was very interesting. Like, literally no one's ever walked in here while I was doing this before that is the first time that's ever happened. I'm sorry. I wonder if you if you were to have gotten there and didn't have stuff if you didn't prep as well as she did? It was would there have been a way for you to get what you needed?

Katy 9:27
Yeah, I think it wouldn't have been impossible. Um, I think I could have they they have a universal health care system which is great for for kind of covering everybody but I think I could have paid out of pocket to see a private doctor and just gotten a prescription and then paid out of pocket for insulin and gotcha. It might have been a difficult I might not have been able to get I don't know if I would have been able to get out because I have a continuous glucose monitor and One time. And I'm not sure if it might have been more difficult to get prescriptions for those items, but at least for kind of like, getting by I'm almost positive it would have been still okay. What if you would

Scott Benner 10:13
have said, What if you would have met a boy who is from a country where your stuffs not for sale? Like if you're pumping your CGM weren't available wherever he was from? What How would you have felt about that? Do you think?

Katy 10:27
Yeah, I mean, haven't really gone? I don't know. I haven't really gone down that

Scott Benner 10:34
is it there are places there are places all over the world that you can't get an omni Potter, you can't get Dexcom and stuff like that.

Katy 10:40
Yeah, I don't know what I mean. I'm a relatively recent convert to using CGM in the scheme of things I actually was offered when and I used the I have a mid Medtronic insulin pump 670 G, but I don't use the closed loop system. And then I have a Dexcom. Okay, CGM. And I tried the mini med CGM, maybe five years ago or so six, maybe they were trying to they were kind of encouraging me to try not with the 670 G, but with the just with the old Medtronic pump that they had. And I just hated it. It was I felt like it was inaccurate. It was beeping all the time. Driving you really crazy. And so I, I kind of thought all CGM suck. And so

Scott Benner 11:44
I don't know what to say. I don't know one person that that used that original Medtronic CGM. And that was like, This thing was great. Like, and yeah,

Katy 11:53
I used it for less than a week I think before it was like, No, this isn't for me. My blood sugar's are fine.

Scott Benner 11:59
I think in fairness to not that we need to defend anybody, but being the first through the door is hard. You know, like the first person to be like, we're gonna try a thing, you know, and then you're like, isn't work as well as I needed to? It's tough. Somebody's got to blaze a trail. And that's not Yeah, it's not usually a happy story. When you're trailblazing. That's for sure. Yeah. But so you got a little turned off to it for a while. Sorry. You were a little turned off to it for a while.

Katy 12:22
Yeah. Um, but then that, you know, I kept hearing people talk about the Dexcom. Even before I got the Medtronic CGM, people were talking about how much they love the Dexcom. But I just kind of thought It can't be that different from the Medtronic, all kind of the same, same. And so I didn't use another one for maybe three or four years after that. And then actually, I think only two and a half years ago or so. My doctor that I had just, I only had him for one or two appointments, and he was like, why are you not on a CGM? Like CGM are so great. I'm writing you a prescription just go get one. Right now this Dexcom is covered by your insurance anyway. And it really has changed my life. So if you ask me now I would really prioritize being able to get a CGM is the short answer.

Scott Benner 13:16
So it was easier to get you to Slovenia than it was to get you a CGM.

Katy 13:20
Yeah.

Scott Benner 13:23
That's hilarious. So in the note that you wrote me, you said that for a very long part of your life, I want you to really kind of dig in and explain this concept to me that, you know, I don't want to put words in your mouth, but you minimize diabetes, or tried to keep it in the background white. I want your words for it. But I want to understand how how you treated it, in that that time?

Katy 13:44
Mm hmm. Yeah, I mean, I think I was never, I've heard on some of the I listened now to a quite a few of the podcasts. And now I'm listening to them, like a couple times a week, every week. And I've heard a lot of people say, maybe they were embarrassed or ashamed. And I didn't, I think I didn't really feel that way. But um, I just really didn't want my identity to be associated with diabetes. Like, it felt like a stereotype I guess. Which is kind of crazy now to think about, but yeah, so I definitely didn't bring it up unless somebody asked. And then if somebody did ask, I always was happy to talk about it. But it's funny, especially in high school,

Scott Benner 14:33
I always think of it is. I'm trying to really listen to people and dig through what they're saying. And I wonder sometimes if that idea of like, it wasn't a big deal to me, I just didn't want to have it attached to me, is a fear reframed. Like, like, like, you must feel like that's what's going to happen or you wouldn't be concerned about it. Does that mean Yeah,

Katy 14:56
I think I thought it definitely was coming from a place of fear, I think, um, I think I thought people would maybe take pity on me or think of me as more vulnerable, or feel like they couldn't just act normally around me. Um,

Scott Benner 15:15
did you have that fear about yourself? That you were that person? Oh,

Katy 15:23
no, I don't think so. Okay, I felt like I always felt pretty confident about who I was. But you know, so I got it when I was 11. So and I also changed schools the same year. So I switched from a private, small or C, dinky school to a public school because my dad wanted a better math program in sixth grade. And I was like at that for that first year, I was giving myself insulin injections, because you had to give yourself insulin injections for a year before they'd let you get an insulin pump, right. And so I was switching to this new big school, I didn't know anybody. And I was the kid who was like stabbing themselves with needles at lunchtime. And I just, you know, at first I was really worried. And then I, then I kind of realized that maybe it's kind of a conversation starter and like, so then I kind of thought, Oh, it's like a joke. I can make a joke out of it. People will be like, Oh, are you doing cocaine? Or?

Scott Benner 16:24
Yes, that's great. These children really understand the cocaine process. Yes.

Katy 16:32
And so yeah, it actually helps me to make in the end, it helps me to make some friends. In a way. Yeah,

Scott Benner 16:39
no, I don't this I don't not understand. And I don't think like, I don't think anybody handles anything wrong. You don't need me. Like, I think whatever works, you I'm just super interested in like that. That idea of, I don't want people to see because then they attach me to it. Because I think that's obvious. I think people make snap decisions about stuff. I don't think that's an unreasonable thing. But I wonder about the juxtaposition to the people who really legit don't care. And then they're not like, it's not, like, aggro, like, don't care. They really don't care. You don't mean difference between like people who say they don't care. But that's just a position they're taking in the people who really do just drift through things.

Katy 17:23
Yeah, I definitely. Yeah, I definitely feel like I'm more on that side of the spectrum, as I've aged. But, you know, I never tried to hide it. I was always checking my blood sugar's in class. It wasn't like I was trying to minimize it in that way. Yeah. It's just socially with friends, I would never be like, hold on a second, I'm counting my carbs. Like, don't interrupt me, you know.

Scott Benner 17:51
Stop talking about Boys to Men for five seconds. Well, while while I go over how many grapes are in this bag?

Katy 17:57
And sometimes maybe I would have needed, you know, that minute, but I just didn't bring it out, you know?

Scott Benner 18:03
Don't make sense to me. And your, your management's. I mean, from what you shared with me, it's always been pretty stable, right? Like you're a one sees and things like that.

Katy 18:14
Yeah, I definitely I'm gradually, like, you've kind of talked in some of the episodes about how people kind of get complacent and don't really notice a slight drift. And so I did notice, I think I was pretty happy actually to get the CGM, because maybe in the last prior to getting it the last couple of years, I was starting to get more regular agencies in the mid to high sevens occasionally. And that's that was higher than I ever used to get. I was always kind of in the sixes, low sevens. And so I was kind of like, Ah, you know, maybe I'm, and also one of my doctors referred to me as uncontrolled diabetic on a note, and she said it was in order to be able to get better access for prescriptions of some sort. I can't remember what the context was, but it kind of just freaked me out reading. Yeah, like, even if it was her exaggerating for the sake of prescriptions, right.

Scott Benner 19:21
Let me just call you mass murder for a second, but don't worry, it's just to get your taxes lowered.

Katy 19:28
Like, Oh, God, am I am I anywhere close to an unconditioned? Maybe I kind of felt like maybe I was getting there a little bit. I was just a little too comfortable with being in the two hundreds, from time to time. Yeah.

Scott Benner 19:41
Well, it does occur to me that if the doctor was willing to say it, the numbers must have at least backed it up enough that they thought that

Katy 19:50
she wasn't like putting her license on the line by writing that

Scott Benner 19:53
it's not like you had a you know, a 5.2 a one saying she's like, this person's out of control. You know, somebody would say No, they're not and and that would have been that. Did you have all the Did you have crazy lows? Or no was your variability pretty stable?

Katy 20:08
Huh? I mean, okay, so now that I've been pregnant and on the CGM, I mean, it's all it's definitely all relative. Because looking at what my blood sugar's are like now and how stable they are now and kind of the range that they're in now and have been for almost a year, I would say that there was way too much variability, then yeah, but you know, I've heard other people talking, it's, I think I was kind of like, not really going below 40 or 50. Very often, or ever, and not really going above 250, or kind of the high 200 often or ever, but that's still a fairly good range. You know, like, that's, that's not really the healthy range.

Scott Benner 21:00
It's interesting, though, isn't it? Like talked about before the CGM before you could really see it, that all just seemed okay. Right. Like you weren't, you weren't sitting around thinking like, Oh, I have a real problem here. I have to get on top of it.

Katy 21:11
Yeah, no, I mean, I was the I was kind of like, I should start to get slightly I should hone in on my control a little bit, get back to where I was when I was first diagnosed, but then it just kind of, you know, right. never took priority.

Scott Benner 21:25
Yeah, yeah, it's, um, it's like your house is on fire and your responses, I got to make sure my smoke detector batteries are okay. Instead of we should put water on this. And it because it's not. It doesn't feel imminent. Is that why?

Katy 21:40
I don't know. I wasn't ever. No, I don't think that's why exactly. I wasn't really aware. Like I just wasn't, I wasn't really kind of looking into more current research and more current ideas about it, like, I was diagnosed when I was 11. And I was really up to date for at least, you know, five or 10 years after that point, kind of like, paying attention to jdrf, and really had a great relationship with my endocrinologist and finding out the latest. And then, somewhere along the way, I was just kind of doing my own thing, doing jobs separate from it. And diabetes is just becoming kind of a smaller and smaller part of my life. And so I think I just, I kind of got trained in an a little bit more of an old school mindset, and didn't totally adjust my thinking, as people were realizing more and more, yeah, how harmful the high blood sugars over time can be. And

Scott Benner 22:40
then you wake up one day, and you're like, this is how I do it. And there's, like,

Katy 22:45
really pregnancy woke me up. But then kind of listening to your podcast and doing my own research outside of that and reading some books. It's been interesting, kind of realizing how doable it is to have an overall lower range and a more consistent range. Well, and how healthy it is.

Scott Benner 23:07
Yeah, well, let's find out about that a little bit and what you figured out? So did you make the baby on purpose? Or was it a surprise?

Next time you buy a car, or a sofa, or a house or a pair of shoes, don't even bother shopping for those things. Just go to your doctor's office and say, I need a pair of sneakers. Just give me whichever pair you want. Doc pick out my sofa for me. Where do you think I should live nurse practitioner. That's not how things work. But you let those people give you a blood glucose meter. And you never asked, Are there other options? Does this one even work? Huh? Why don't you do that?

I'm gonna guess you were overwhelmed. You didn't know what you were doing. And you thought, Oh, this is a blood glucose meter. Why would you think there were other ones happened to me, somebody gave us insulin. And I thought this was insulin. But now Arden uses a different insulin because I looked into it. And I learned and I made a more informed choice. You can do that with your blood glucose meter. If I was you, I would start at Contour Next one.com forward slash juicebox. And look at the Contour Next One blood glucose meter. See what I'm getting out here. This is an ad. And I'm trying to get you to go to a link and you're going to do it or you're not going to but if I was you, I would and I'm not just saying that because someone's paying me. This is the meter that my daughter uses. It is absolutely the most accurate and easy to use meter that she's ever had that I've ever held. It has Second Chance test strips so you don't waste the strip. You If you don't get enough blood the first time, as a super bright light for nighttime viewing a screen that is easy to read and use, it fits nicely in your hand or in your pocket or in your purse. And it's really, really, really, really, really, really, really accurate. I don't know what else you'd want. So you should check it out. Contour Next One comm Ford slash juice box. They also have a test trip savings program that might be valuable to you. And the supplies could end up being cheaper and cash than you're even paying now through your insurance for another meter. I don't know. But that's where you find out Contour Next One comm Ford slash juice box it is a super informative and easy to use website that will give you all the answers you need. Do you wish that your meter was connected to an app so that all of your data can be saved in one place for later viewing. If you wish that wish comes true the Contour Next One blood glucose meter does that. But if you don't want to use the app, the meter works just as well without it. links in the show notes links at Juicebox. Podcast com Contour Next one.com forward slash juice box and while you're out on the internet tooling around getting yourself a new, amazing meter. Also check out touched by type one.org. Super simple right touch by type one.org you can do that. Let me remind you here to have you filled out the survey for the T one D exchange T one d exchange.org. forward slash juicebox. Let's get back to Katie.

Katy 26:31
It was on purpose good

Scott Benner 26:32
for you look at you. Your parents.

Katy 26:38
Yeah, he was we I had an IUD. So it was like you have to be

Scott Benner 26:46
it's tough to get around those. Lovely. So you decided to make a family? And, and I am assuming you're staying where you're at now, right? Like this is

Katy 26:56
not forever. We're actually going to be moving back to California. sometime in the next one to two years. Okay, that's the plan.

Scott Benner 27:06
Is there a language barrier for you? Are you like by yourself there?

Katy 27:11
No, it's not that everybody speaks English. Pretty much if they're under kind of a age of 40 or 50. They know pretty pretty good English. And then it's a bit of a crapshoot, depending on who you're talking to, and where you're located for kind of the older generation and also the smaller towns outside of the capital city.

Scott Benner 27:36
How much like right around like the area you live where you do what you do shop and do stuff like that, like do people like Do they look at you and go That girl's the American girl that I told you about?

Katy 27:50
Yeah, I think to some extent, you know, I'm taking I'm learning it and I try to speak Slovenian as often as I can. But it's a really complicated language with cases it's kind of most similar to Russia. And if you have to make a comparison and it's not good,

Scott Benner 28:11
you're not good. good at it. I just really imagine you wandering the street and they're like, Look, there she is. I told you there was a one there was one here it's there she and she's pregnant.

Katy 28:23
Helping it's not helping my case, but I'm pregnant and I'm really large. And I'm only seven months pregnant. I'm He's my baby is going to be really large. And I look already like I could be about to give birth so like the way I mean I guess everybody's white here but like the cute American super pregnant lady that stands out shut

Scott Benner 28:45
up and then she started making babies so I if it makes you feel better the portion of you that I can see does not look pregnant at all. You're doing your top third is rockin i would i honestly when you when you popped up, and I could see you That was my first thought. I'm like, I thought she was going to be pregnant. Like that's literally what I thought when when when you came on the camera and I was like, Oh, alright, well good. Anyway.

Katy 29:10
I'll stand up later. So you can see. It's amazing.

Scott Benner 29:16
Like two people, just like yeah, I ever see those people walking around who looked like they were made out of spare parts. Like I always imagine, you know, the end of the day, whoever's putting people together. It's like, well, we have a top half left at a bottom half left, but they don't go together and they're just like, hell let's get out of here and they stick them together and leave like I wonder if that's not what's gonna happen. I'm just gonna stand up and look like two different people.

Katy 29:40
I used to do that with my gummy bears. I'd like shoe off the head of one color and the bottom of another and glue them together.

Scott Benner 29:46
I don't understand people who don't do that. What do you think? That also works with gumdrops and other such things like you know how sometimes like, like a red gum drop and an orange gum drop tastes nice together, but you don't want to gumdrops you split them in half. Yeah. Yeah. I don't know who doesn't do that. If anyone listening doesn't do that mistake that's all fine. Get returned the gummy bears backwards. So they're like monsters?

Katy 30:12
Oh yeah, definitely. Like all kinds of Frankenstein gummy bears.

Scott Benner 30:16
Are your kids in for a lovely upbringing? I think you're super excited to have you. Do you know what kind of baby it's gonna be?

Katy 30:25
Yeah, he's a boy.

Unknown Speaker 30:27
Congratulations,

Katy 30:28
my Sorry, I I'm I am happy no matter what if he's healthy. But my family is heavily boy, filled already. So I was kind of hoping for a girl.

Scott Benner 30:39
Well, don't worry. I'm sure the fifth one will be a girl. Yeah,

Katy 30:42
I'm not having people who get stuck in your situation

Scott Benner 30:45
are always just like searching like how we're gonna do it one more time. But you don't even want to anymore? Like they they're like, do you wanna have another baby? No. But we'll do it. You don't think you're having a bunch of kids?

Katy 30:57
No way? No way. I know. I do know. And actually, once you have, I forget what the statistic was exactly. But once you have two, or possibly three of the same sex, then your, your statistical likelihood of having the opposite sex for the third or fourth. So is way way down. So like,

Scott Benner 31:18
like, this is just the soup you guys are comes out this way? Yeah, kinda

Katy 31:21
like there's some genetic components and environmental components. And some people are more prone to the environment that's good for girls or boys. So if you have this evidence backing it up already, that you have these two boys or whatever, you know, that you don't need. Don't, don't go for it. Again, if you're really hoping for it,

Scott Benner 31:40
I don't want to get too far off track. But a lot of boys in your family is there a lot of type one in your family.

Katy 31:45
There's no history of any autoimmune conditions in my family that I'm aware of

Scott Benner 31:53
just you, just me literally, like you don't have a grandma that looks tired all the time or anything like so

Katy 32:00
my grandparents have all passed away. And I do know that, you know, people weren't as aware of kind of what were the different complications that were happening to people. And so it's it's possible that there has been some genetic history that I'm not aware of, for great grandparents or grandparents.

Scott Benner 32:20
It's just interesting that on my, on my wife's side of the family, the autoimmune stuff stays with the women. Mo really mostly. But very recently, we think my son might have hashimotos, so maybe not. So I don't know. Do you have any other ones or just type one, you're only get

Katy 32:38
just type one? Yeah. My mom, my godmother has hashimotos. So I'm just starting to learn about that. But we're not really that. It's so

Scott Benner 32:49
funny when you said just type one. My inclination was to make a joke. And the joke that popped into my head, I actually stopped from coming out, which is a real life triumph for me. It's not gonna stop me from saying it. Now. I just wanted you to know that I didn't mean it. But like when when I said to Jeff, just one you said no, just one I was gonna go loser. I don't know what kind of a type one can't get another autoimmune disease?

Katy 33:13
Yeah, well, you know, there's still time, you know,

Scott Benner 33:16
don't give up. That's a good at it.

Katy 33:20
I actually just, I was listening to one of your podcasts about trial net, and I forwarded it to him because I have four brothers. So I forwarded it to my parents and my brothers. And I have five nephews and a niece. And so I was just thinking, be interesting, though. Some of my brothers have kind of aged out, there's still some of them are still kind of in the range where it would really help them to potentially get tested.

Scott Benner 33:47
Yeah, that's such an interesting concept about wanting to know or not wanting to know, I think I think I know it's funny. I think I know what side of it I'm on until you really start applying it. Well, I guess I should say this. Cole was tested when he was 12. And he didn't have any antibodies, right. And when the hashimotos came up, around like, he's almost 21 like your first inclination was like, should we test him again for diabetes antibodies? So I talked to the person I know it that I'm at trial net. And I said, you know, should we do this again? Or they said if you don't have anybody's the first time it's they don't even retest for it after that, like, it's incredibly unlikely. And it made me feel it made me feel good. You know, now, yeah, I yeah, if he had them back then I guess we would retest now. And then at least you'd know, but you don't I mean, like so.

Katy 34:45
And it's Yeah, I mean, it's really interesting because I feel my first thought was, this is amazing. I think everyone in my family will want to do it. I just thought automatically like, this is like information. There's power, and there will be support for you if you have anything. Plus there's this new studies for prevention. Potentially, you could prevent it even for some years, this is absolutely worth knowing. And I don't think a single brother has acted on it at all, or even responded, which is very unlike my family, so

Scott Benner 35:21
they're just ignoring you completely. They're like, we're gonna append this text didn't come.

Katy 35:25
Okay. In their defense. It is like the season of COVID. And it's a crazy year, and everyone's children are doing school from home. And it's not really a good time to add on some other potential health crisis. But but it

Scott Benner 35:37
would have been neat to hear like, thank you. Oh,

Katy 35:42
they were just Yeah, I don't they all have little children. So I just kind of cut them slack.

Scott Benner 35:46
Well, I think that's a good look into why people don't do it sometimes is that just feels like, like, what am I going to do that? Like, there's so much going on already? Is Your Life slower there than it was in California? Like, and I don't mean, like, in a bad way? I mean, is it more paced and comfortable?

Katy 36:04
For me, it is, I'm, I'm a little bit limited professionally here, because I was not speaking the language fluently. So I'm in California, I'm an occupational therapist. And here, I'm not able to work as an occupational therapist. And unless I can pass this sort of language, competency proficiency level. And so now I'm working as a native English speaker in a kindergarten only part time because right now because of pregnancy, and everything, and just kind of doing, you know, teaching on the side taking some Slovenian classes, but my life has definitely slowed down.

Scott Benner 36:53
Did that help? Do you think did that give you did that? I was wondering if that helped with your management, like, does it help to not be rushing so much?

Katy 37:03
Yeah. And so just to just to bring up kind of the differences in the Slovenian healthcare system and the US healthcare system a little, it is really amazing. If you are a type one diabetic, over here, you can have the entire nine months of pregnancy as paid sick leave. And then you get a year of maternity leave

Scott Benner 37:26
after that. So a year and nine months if you're on type one,

Katy 37:30
and potentially you split that year with your husband, so he could have three months, and you could take nine months, something like that. But

Scott Benner 37:36
so the family gets a year and nine months to use the way they want to. Mm hmm. Wow, how much of it? Did you did you keep teaching? Are you teaching still, but just not as,

Katy 37:45
though I am still teaching now. But um, it's really very, very part time. And that my I would work at a Montessori kindergarten, and it's very sort of family oriented. And they just basically letting me say how many hours I want to work. And

Scott Benner 38:03
it's lovely. Yeah,

Katy 38:05
it's great. Actually,

Scott Benner 38:06
I not that I'm trying to game the system, but my mind wanders, say you wanted to work your first seven months of your pregnancy? Could you take off a year and seven months after you have the baby? Like, can you know, the nine was different,

Katy 38:24
it's a different kind of thing you can, you have to get the doctor to sort of sign off saying that you are in fact type one diabetic and pregnant during this time. And then it's actually it is still kind of a headache in terms of the paperwork to get reimbursement. And something in favor of living in California over Slovenia is that the salaries in general are much, much higher in California compared with here.

Scott Benner 38:50
So the point is, it's not that expensive to pay you while you're not working to begin with. Yeah, that makes sense. So I thought for sure. You know, I was like, Oh, this is gonna be one of these situations. And it kind of is the way you that you know, what you did here at home. You know, when you meet somebody who's an immigrant, they're like, you know, I used to be a doctor. And now I work at a grocery store, like that kind of feeling. And in not that either of those professions are better than the other, but it's, I can't get a job. I can't even get it. Like I have to get a job where, you know, I can come in and learn the job on you know, while I'm working. It's not like you're even showing up with any information prior to.

Katy 39:29
Yeah, well, I mean, some of the I was thinking if I lived here longer, which were sort of hoping to potentially live here again, after we moved back to California for some years, then come back to Slovenia for some years. And potentially, I could, once I kind of finished the language learning to a certain extent I could work. So I started volunteering here as an occupational therapist. And I will say also that the environment I was volunteering at was amazing compared with some of the environments that I've volunteered at or worked at in the US as an occupational therapist in terms of resources and tools and kind of ideology. It was really like, it would be wonderful to work here.

Scott Benner 40:19
So you just got to ya got to learn some more words and phrases. That's all. Yeah. Well, it's nice to see that there's a level of competency that they're not willing to sink below. You know, it's kind of great. I bet you'll be able to do it.

Katy 40:36
Yeah, it's, it's slow. But I've been working for a couple years. So little by little.

Scott Benner 40:42
Yeah, I mean, Melania, Trump was the first lady so you should be able to be an occupational therapist. You seem Yeah. You seem smarter than her. If I'm just I think you can do it.

Katy 40:56
All of the Slovenians learn English automatically, basically starting in kindergarten, and, and then they usually start learning an additional language like German or something like this. as they progress through school, so most adults, as they finished high school speak something close to three languages, and many speak more. It's

Scott Benner 41:19
so messed up here, because the way they teach a second language to kids around here is you just have to pass the test. You don't have to speak it. So right. You know, I took three years of French, I don't know a word of French, my son took Spanish forever. Like I think he was like, two classes away from having and as a minor in college can't speak Spanish at all. And right, and my daughter said that her French teacher is being yelled at by her. This is one of these zoom, like things you learned during zoom. She's like, my French teacher is being yelled at by her Russian parents, and we're watching movies. I'm like, Why now? Say it again. She said we're gonna watch a movie with you know, in, in French. And then the day comes and she's like, I couldn't find this movie in French. So you now you're just watching, you know, Finding Nemo might Yeah, my 11th graders watching Finding Nemo at 10 o'clock in the morning. And she's like, I'm like they're not teachers just know. She's busy getting yelled at by her parents. Yeah, education.

Katy 42:18
That all feels very familiar. I actually really liked my French teacher in high school. But we definitely watched Finding Nemo in French. And it is definitely true that I I took three years of French in high school and three years of French in college and I don't speak French. Now as an adult. I don't

Scott Benner 42:35
know how we mess stuff up so much. Like it's everyone's so focused on just like, you have to have a good grade so you can get your next thing. You know, I want a good grade in high school. So some good college will take me I want a good grade in college so I can get some job. Meanwhile, nobody knows what they're doing in high school. Nobody knows what they're doing in college and they get their job and they don't know what they're doing either. And everyone's just trying to pretend their way through to retirement.

Katy 42:55
Yeah, I mean, I think it would be different if, if I had moved to get back or something. And then in a place where they're speaking French it would have sunk in but yeah, um, now it's been a decade since I ever even tried to speak French and it's just gone. Yeah,

Scott Benner 43:11
Arden asked me one time she's like, What do you remember about French? I was like, I think nuff means nine.

Katy 43:18
Yeah, exactly. Yeah, I

Scott Benner 43:19
was I thought I got sorry. My Damn. Like, no, I don't have much of it at all. Well, that's interesting. Okay, so you with your, I think we understand that you prior to CGM were in the mid sixes drifting into the seven sometimes, but probably had some more variability than you wanted to. You have a CGM. Now you can see it. Your How do you get yourself where you want to be? With your Awan senior variability prior to pregnancy? Or just the pregnancy shock you into doing it? How did how did that go?

Katy 43:56
Yeah, I guess I did get close. It was kind of gradual. I was talking about the idea of trying to get pregnant, um, but not really getting serious about it for maybe a year before we started trying. And my doctors were saying yeah, you need to get your ideally you need to get your a one c below a six. And that felt pretty daunting. I can remember thinking, I don't know if I've ever been below six. And and that was actually when I got the CGM, the Dexcom because that was Yeah, about a year before. We were really thinking about pregnancy and I was thinking I'm gonna need to wear one during pregnancy anyway. So I better start getting used to it now. And then yeah, so I think prior to conception, I was really more like, right around the six level Okay, maybe 6.1 or six point now.

Scott Benner 44:59
Like I did of moving it down like a quarter of a point or half a point seemed impossible.

Katy 45:06
Ah, no, but I will you know, prior to that I was probably more in the high sixes. So it was still I had still been moving it down noticeably with the help of the CGM. But then once I was about a six, it started to seem like okay, this is more doable. And then this is kind of interesting, actually. I started having a onesies in the fives pretty much all through the pregnancy so far. And then I think two or three months ago, I had one that was in the fours. And wow, I'm really doing doing okay. But then I talked to my sister in law, who is a nurse, and she also has studied diabetes a lot. And she was saying, Well, actually, the A onesies during pregnancy start to get a little wonky, because your blood volume increases so much that they might reflect a bit lower. Yeah, then you actually are,

Scott Benner 46:09
is that idea that you would literally dilute it would dilute it?

Katy 46:14
said, you know, that's great. Congratulations on your scores. But don't get too swept off your feet?

Scott Benner 46:21
Well, listen, I think you're making a strong argument here for staying pregnant your whole life till you can get a job. He's gonna stay 4.8 you might as well just just keep chugging them out. You're not Catholic, or you

Katy 46:37
know, and I, you know, I'm pretty much was not even sure if I wanted to have one or, you know, now we're thinking maybe we'll have to, but it's just like, I'm not having more than two kids, you know, I would have been happy having zero kids. I'm pretty sure. The other

Scott Benner 46:52
day my wife said, it was a lot more fun when they were little. And I said yes, it was,

Katy 46:59
I would think that it would start to be pretty fun. Again, once they kind of get out of your hair. And you can go travel and see the world you care

Scott Benner 47:07
about them. It sucks as soon as they can think for themselves if I'm being honest. Because now you have a being like being serious. Now you have to, like you know what it's like to have a relationship with your husband, right? And he's got ideas, and you have ideas, and you have to find a blend between them. Imagine if you were married to two other guys too. And you had to blend all three of their ideas together with yours. And one of them felt the same way about the other three instead of the other one. Everyone's just trying to like, and nobody wants chicken on the same night. I can tell you that much. And that stuff starts happening. And you're like, Oh my god, do you remember when you could just say to them? Hi, this is chicken, shut up and eat it? Oh, yeah, they'd go, okay. And then you'd say, Hey, I thought today we'd go to grandma's house and go swimming. And everybody go, okay, not one of them would go, No, I have plans. And the other one say, I don't want to swim. And then you just go, Wait, what? And why am I incorporating your thoughts into my life? And then before you know it, and then you're trying to save money to send them to college? And then you start thinking, Oh, god, what if I die? How are they going to take care of themselves? So now you're taking every extra dollar you have and sticking it somewhere? And you know,

Katy 48:26
and then when you say things like that, I just really feel like why am I moving back to the United States where college costs an arm and a leg when I could raise my kids in Slovenia? And they would have college built in for free and get paid a stipend while they're in college? Yes,

Scott Benner 48:44
well, you can thank my son's college bills for the veracity in which I make this podcast. So there are days I get up. And I'm like, I don't really but here we go. And yeah, like I'm doing this. And it's not that I don't love making the podcast, I don't want to say that. I'm just saying I might take a day off once in a while. If it wasn't for like the pressure of just making money to make money so that you can do this thing and then have money that have my son come home and tell me like that class was a waste of time. And think about how much I paid for it. And I'm just like, it sends a chill through your spine.

Katy 49:19
Yeah, it is a weird. I mean, I have four brothers, and we all have gone to college to some degree or another. And it's crazy to think about when you start doing the math on how much does one course cost? And then how many classes are in that course. And then if you're sick one day and you don't go to the lecture, like you don't want to do that math, you know, it's like

Scott Benner 49:43
no, I have already I know you don't want to Yeah, my son was telling me about a friend the other days ago, he is taking one class virtually like a lot of kids like my son skipped this semester completely. He said that virtual learning was so terrible. He's like, I'm just gonna skip a semester, cross my fingers for COVID getting better and go back in the fall and But he's got a friend who's taking one class. And they're excited that it's such an easy class. He doesn't have to go to the class. And I was like, I bet his parents aren't excited about that news. You know, oh, no, he's gonna get a great grade. I'm like, will he learn anything? He goes, I don't think so. I was like, then I'm not certain what's happening, then. Yeah, other than what I mentioned earlier, which is everybody's just trying to achieve to move. And nobody learns anything. Yeah, you know,

Katy 50:25
I have to say, I I'm definitely struggling with that mental shift a little bit as I'm taking these Slovenian language classes, because it really doesn't matter at all, what grade you get. And I was always in kind of in a little bit of a nervous a student kind of person. And,

Scott Benner 50:43
well, let me remind you that nuff means nine.

Katy 50:49
The point is not whether or not you're good or not, you know, the point is that you're learning the language so that you can freakin speak the language in the country that you're in, you know, speak with my husband's Grandma, like, this is the point. Yeah. So I'm really having to do like a mental shift

Scott Benner 51:06
cola for school, I said, Listen, you have to keep your GPA high enough to keep your money because he's getting money for a number of different reasons is a you need a GPA high enough to hold that money, you lose that money, you're coming home. So there's that. But after that, you don't need a 4.0. What I need you to do is leave college, understanding something, like having a grasp of something I just went Arden said to us. She wanted to go to fashion school. I was like, Alright, at least she'll come out with like a demonstrative like thing that she knows how to do. And then I found out that it's much cheaper. And I was like, well, then right on, this is definitely the way you should. Yeah. You know, until she said, Can I go in London or France? And then I was like, oh, Who the hell's gonna pay for that? I that seems expensive to me. But

Katy 51:55
maybe take a year off and do something with fashion, raise some money, get a job,

Scott Benner 51:59
that'd be nice. Yeah. But anyway, that's it, you're gonna get them, they're gonna, it's gonna be the cutest little greatest thing in the world. And you're gonna have all these high minded ideas about shaping them. And, and then one day is gonna turn like 12 or 13, and disappear into his bedroom for like three or four years. And that'll make you super sad. And then I'll get a bunch of friends, and then you're gonna be thinking a lot about I hope he doesn't drink too much or drink at all or do drugs, then you'll worry for that for about four or five years. And you'll think, Oh, I hope that girl doesn't stick because she's really not the right one. I don't think you'll worry about that. And then he'll leave and you'll feel abandoned. And that'll be it. Yeah, you. You're gonna have a great time. No child rearing progression. Meanwhile, it's it's the best thing I've ever done in my life.

Katy 52:50
Yeah, I mean, that is nice to hear I spend more time thinking about diabetes, by far than I ever have. Truly ever, at any other time in the last nine months. And so I haven't spent as much time maybe thinking about how it is actually to be rearing children. And you know, once he's here, what will that be like? And

Scott Benner 53:13
they owe a lot, and then they're gonna like pee on you and stuff like that. Yeah, it's about like that one. Eventually, you get to this really cool spot where you're just like, Oh, it's happening and they start moving. And like the when the crawling happens and everything, it's all listen again. I can talk about it and sound cynical all you want, but it's the best thing I've ever done, was raising my hands. And it's absolutely fantastic. I said to Kelly the other day, it's interesting, isn't it? People who are we were talking about somebody, you're not supposed to talk about people, but we were talking about people and and these people are having marital trouble and it doesn't look like it's gonna go well. And I said, it's interesting, isn't it? Like when you're together? It's the everybody complains about how much it sucks, you know, and being married hard and all this stuff. But people who are alone complain about being alone. married people never say I'm glad I'm not alone alone. People never say, you know, I'm glad I'm not married. It's always like, the thing I have is bad. Yeah. And so you have to at some point, just realize that everything comes with complications. And yeah, being ready for what they are, I don't think is bad. Like, I think that my explanation could sound cynical to people. But I don't think of it cynically I just think of it as like, reasonably speaking. That's about what might happen, you know, yeah, along the way. being ready. Well, it's

Katy 54:35
good. And you said something that I kind of want to say something but it's it's not exactly on topic, but you may think I'm one of the reasons that I got into listening to your podcast and actually got so I just to give you a short background, I got into the podcast when I got pregnant pretty much because I was living in Slovenia and the different health care system here and I didn't really know what to expect. And I just felt like I could use some support in general, and I looked for podcasts that might talk about diabetes and pregnancy. And then you had series. Yeah. And I think I listened to that one first. And then you also had one with Jenny Smith about pregnancy and, and then I actually had purchased her book, and I didn't realize it was the same Jenny Smith. That's fine. I've been reading her book, and I like almost cried the other day, because it was so accurate to my emotional experience during the seventh month of pregnancy. But anyway, oh, shoot, did I lose my train of thought here? Oh, I was just gonna say, um, then I started listening to some of the other episodes also. And some of the ones that caught my attention were ones about complications, people who are dealing with complications. And what I was realizing is that I have had fear of complications, without wanting to do the whole thing of like, Google search, gangrene, you know, or I don't know, like, even as an occupational therapist, I've had patients who have amputated legs, and I'm helping them to work on their amputate, you know, how to walk, how to be non weight bearing in the meantime. And so I'm definitely flirting with this understanding. But it feels very, something that I just don't want to dig into too much, like, very dark and scary. And once I realized that you have these episodes with these real people talking about their real complications, and being willing to list kind of every complication under the sun, and talk about how it affected them. But still be humans still be positive, still be experiencing their lives in a normal way, and accessible, open way, just made it all so much more approachable for me. And I think that, oh, okay, I've been listening to the podcast for some pregnancy advice with diabetes. But I think this is probably the nicest thing that the podcast offered me, it's just an opportunity to expose myself in a sort of safe setting, to the to the complications, and then, and then not be afraid of finding out more not being so afraid of outcomes. And, you know, they're not very likely to happen to me anyway. So it wasn't something that was like, I really need to look into this. But I tend to be a person who likes to know, what's the worst case scenario, right? So this was kind of a weird, black hole of information for me where I was like, I just don't need to know.

Scott Benner 57:52
Yeah, like, maybe, maybe I'll just pretend and just not look over there.

Katy 57:56
Yeah, like, Okay, I have my management has been good enough. So I don't need to

Scott Benner 58:00
Yeah, sort of like complications, or the old chair in the corner where you pile things. And you just, yeah, walk into the room, you're like, isn't this part of the room? Terrific. Don't look over there. I understand. And I'm thrilled that it did that, I have to say that my understanding of how valuable that is for people, especially right in your age range, who have had diabetes for a certain amount of time, is becoming greater. I'm hearing from more people like you who are saying that. I don't know if it went out yet or not. But I interviewed somebody who I thought for certain was going to come on and talk about how they learned to help themselves, like with insulin, and how it got them there. And then she just floored me by saying I knew how to take care of myself. I just didn't do it. And she's like, in the podcast led me to want to take care of myself. And I just I never like I didn't imagine that part of it. And that's the part I can't I kind of can't imagine it because I don't I don't have diabetes. I think that's the that's the spot where I was gonna say it hurts the show that I don't have type one. But it turns out the people who come on filled in that need so it's really lovely. I'm glad to hear and Jen Jenny, that you almost cried reading the book will make me very happy.

Katy 59:13
Yeah, and I'm sure you know, I feel embarrassed. I don't have the book right here because I'm forgetting the name of the co author. And she also I connect to her.

Scott Benner 59:22
Absolutely. No, I 100% know. But it's so weird that you heard Jenny on a podcast and we're reading a book that she helped write and didn't know it was the same person. That's Yeah,

Katy 59:31
well, cuz I just you know, when I got pregnant, I was like, I'm just gonna order any book. And it turns out there are not so many books out there for type one diabetics in pregnancy.

Scott Benner 59:40
I think on our schedule coming up, Jenny and I are gonna talk about postpartum

Katy 59:46
soon so that I can listen to

Scott Benner 59:47
I will hurry up just for you and get it done. Now I think we're doing a pro tip on postpartum soon, which Oh, great. be lucky for you because I won't be saying much. I'll just be making stupid pregnancy references whenever jokes pop into my head while she's exploiting stuff.

Katy 1:00:01
Nice. Yeah, yeah, I also tells talks to a type one diabetic who, who really amazed me, she's a wife of a co worker of my brothers. So not really a connection of mine, but, but she's type one diabetic who had twins, and a couple years ago, and then had another baby after that. And so just having twins is already a very high risk kind of situation. And so I was I'm kind of like fishing for all of the wood and all the other tips for after you give birth that you can take care of. She said, Oh, yeah, you're always going to be low blood sugar when you're breastfeeding, so have pots of gummy bears or jelly beans around in the house. And I think I thought actually, that that's also listed in Jenny Smith's book.

Scott Benner 1:00:53
She just said to me a couple months ago, she's like we need to do, because it's interesting how the pro tip series started. Like, Jenny, I know, you've heard her a lot on the show, and a lot of people have, but Jenny was just a guest. She was a person who came on once and came on again. And I always thought like, I really love the way she talks about diabetes. And so when there was this day, where I thought, I want to do a pro tip series, to like, kind of take the bigger ideas out of the podcast and put them just in one place. I thought, I need somebody else with me to balance it out. And I asked her, she was really kind of do it. And I think I sent her 10 topics. And I was like, Don't worry, I know this is gonna be a lot and I appreciate it. But it's only going to be these 10 topics, then I won't bother you anymore. And then you know, I was like, Well, what about this one? And she's like, also, we should be talking about this too. And then before I knew it, she just told me privately one day, she's like, I love coming on your podcast. And I was like, Okay, I said, Well, do you want to keep doing this? And she's like, Sure. So we just, she comes on, she's on my schedule is

Katy 1:01:51
have a great dynamic. And I feel like you come at it from different perspectives. You know, she has sort of a bit of an academic approach, but it's but she's still very accessible. I don't think she makes it overly complicated. And then you have a very real life experiential approach. And, and also, it's digestible for people. And so I think you you balance each other out really well. And then you have kind of a nice report as well.

Scott Benner 1:02:18
It's just, it's perfect. I swear to you like when it got done, I I've said to her privately, I was like, I wish that this whole thing made enough money that I could just say, Jenny, I'm going to hire you. And like, let's just make this podcast forever, because she's so like, perfect. But obviously, that's not how it works. And I've recently found, and hopefully this will keep going Erica, who's a therapist who I have a really great vibe with and, and I've recorded a couple more things with her. I'm starting to find people that fit into some certain spots. Kim came on the other day and talked about different Oh my god. A very simple word just fell out of my head. Wow, don't get old. Oh, my God. So when people do sciency stuff to try to figure out if drugs do things those are called.

Katy 1:03:11
Yeah, trials. Yeah, no, I actually just listened to this. I think I just listened to this episode. Kim.

Scott Benner 1:03:17
Yeah. And should we got done. And I said, I was like, you can do this again. I was like, whenever you have more like, like stuff to fill in for people like, let me know, because she just had a good way of going through it. And I was comfortable with her. That ends up being the key sometimes is that I just need to be comfortable with the person I'm talking to. Yeah, like a one on a one off doesn't matter. You know, I can talk to anybody one time. But there are people I've had, I think great interviews with, but I wouldn't want to do it again with them. Yeah, but there are some people when I'm just like, wow, we could do this again. This would be okay. Yeah,

Katy 1:03:48
yeah. She also was very well informed, I would say and I was also thinking about whether or not to forward this episode to my family, but I don't want to like bombard them, you know?

Scott Benner 1:04:00
pasiphae ignore you twice while you're pregnant. It's gonna start. You're gonna, your emotions will start building up and you'll be like, nobody cares what I think.

Katy 1:04:08
So yeah, well, you know, one of my brothers has three kids. So it's like, okay, he gets a write off for whatever. And they're all boys. Yeah. And they're running around, and they're at home because it's COVID. You know, it's,

Scott Benner 1:04:22
oh, it's getting it's absolutely getting crazy. My son is at the end of his wits. If there's a wit's end, my son found it. Like, it's, it's been enough, you know, and but he takes the COVID thing seriously. So he's still doing what he's doing and and i think rightfully so. But the point is, is that he just, he needs to go do something. And then it snowed here. And we were like, wait, like, I came walking the yard now. Like, like, I lost that. You know what's really terrible?

Katy 1:04:50
Oh, yeah, that was really terrible for people in California. Sorry. People in California this last summer, there were a lot of wildfires, during the COVID season and so people were like, okay, don't go out to restaurants or public places ever. And also don't leave your house at all, because the air quality is so poor. Right? And I think I know a lot of people started really having some emotional difficulties

Scott Benner 1:05:18
to lock down. It's if you're just literally being, like I said, the other day, I Honest to God was standing in my kitchen, and I thought, Oh, my god, there's that wall in the living room again. Like I just looked up. And I was like, there's that wall looks exactly the same as it looked the last time I looked at it, and I was, I like my home, and I'm starting to get angry at it. Yeah, like, just yeah, I want to, and I can't imagine how he feels he lost. You know, like I said, he lost school this semester. He might have hashimotos their side effects from it, that he's still getting through, you know, like, as the medicines coming online, and it's limited his ability to work out. He's a college athlete. So everything that he does is just sort of like God took from him at once. Not that it hasn't happened to everybody. But

Katy 1:06:02
yeah, but that's a lot to take on at one time.

Scott Benner 1:06:05
That's just too much. So and tomorrow's his birthday.

Katy 1:06:10
Happy birthday. Are you gonna see him?

Scott Benner 1:06:13
When he's here?

Katy 1:06:14
He just Oh, yeah, he's here. But the

Scott Benner 1:06:16
point is, is like, having a birthday during COVID is not easy to do to begin with. And you're already bummed out about other stuff. And he can't be around your friends and your 2021 and I'm going to give you a cupcake. It's not exactly 21 Uh huh. Yeah, the whole thing is suspect he's having a bad couple of months. He really yeah.

Katy 1:06:36
But my nephew just turned 20. And it was kind of similar. Like, he's not at home right now. But he was like, yeah, we're not gonna do that much. And thinking, well, at least he's not turning 21 because that's the one where you really want to go out drinking with your friends.

Scott Benner 1:06:52
I don't think my son's much of a drinker. But there's things he would definitely think there's things he definitely wants to be doing that he's not going to be doing. And a lot of the guys from his team are in a vacation house together. And he's not there right now because of what he's going through. So it's just really terrible. Like I I've never felt worse for him, specifically. And he is one of those people for the first 20 years of his life, like nothing ever went wrong. Like I think he fractured his wrist once when he was 15. But other than that, like he's athletic and strong and excels at things and has never really had a you know, something pushing backwards like this before. So it's, I'm sorry, we skipped over the part where I wanted to ask you, and we're up on an hour, but I still want to ask you. I mean, you're in Slovenia, you have nothing to do just come.

Katy 1:07:41
Yeah. And I you know, I'm like Harley. Yeah, it's really true.

Scott Benner 1:07:44
You're like, all day, don't worry about it. You've been great. And I enjoyed the conversation. But I wanted to ask you specifically, if you can point to what you did to go from high sixes to low sixes from low sixes to into the fives, like Do you know what happened?

Katy 1:08:02
Yeah, um, you know, okay, I would attribute a lot, a lot of their success success to the Dexcom specifically, um, but it also just becomes, I think it's just a matter of attention, more so than anything else. You know, I didn't want diabetes to be such a large focus in my life. For my whole life that I've had it pretty much. I mean, I was never ignoring it. And I was taking good enough care, but, but then when I got pregnant, it became a really large part of the focus. And so now I've been kind of you, you have made jokes a number of times, like, I can't imagine being a person who's counting every card and weighing everything. And I will just add that over here to use the metric system. So I'm starting to get really good at Well, okay, I'm getting better anyway, at guesstimating how many grams something weighs, like baking with a scale? I'm usually using a scale to weigh out how many grams and what's the carb percentage. And I've started taking into consideration fats and proteins, which I wasn't paying very much attention to before. So I think it's just a lot of attention to small things. See,

Scott Benner 1:09:21
I I'm I'm always waiting for somebody to say something that's a little different. So it can it can resonate with people listening, but I have to say that I think that the those protip episodes are so valuable, because I did boil it down though, like what it is and it's just you got to stop your blood sugar from getting high and Pre-Bolus and pay attention. Yeah, get your insulin right. It's there's not really Isn't it weird to think now, from where you came from, but it really isn't much more than that. It didn't feel I

Katy 1:09:53
was people listening before and you know, but just sort of, sort of less can consistently, the stakes were just lower, I think,

Scott Benner 1:10:02
yeah. So it's you're doing it for the baby. Now, here's the question. Are you gonna do it for yourself after the baby comes out?

Katy 1:10:08
Yeah. I mean, I think that that's a cool, it's actually maybe a more difficult question, then, then it seems, because of course, my answer is yes.

Scott Benner 1:10:20
Definitely do that. And then that,

Katy 1:10:25
you know, hopefully, I can actually back myself up and, and hold my own and not kind of let myself slide. I do feel like I've learned a lot. And I feel like it's easier than I thought it was gonna be. Okay. If you had asked me three months ago, it would be really mind boggling to hear myself saying that now. Because three months ago, it felt so difficult. But I'm learning to adapt to the changes, and I'm learning a lot. I mean, it's just like these all these little small things that are not so difficult to do. They're just habit habits, that when you form them, then you can adapt more and more easily. And you know, I think for you also, it's probably hard to imagine how people could possibly not take care of themselves. But so much of the time, it's just, do you have the habits? Do you have the knowledge? Well, in the other order? Do you have the knowledge first? And then do you have the habits belt? Right?

Scott Benner 1:11:24
Yeah, I don't believe that people ignore their health on purpose, I think I think they don't know what to do. And then they start getting responses back from their health that tells them, this is untenable, and then they give up. And that's it. I don't have tools, it's going wrong. I tried again, it didn't happen. This is frustrating. This must be that's where people come up with this is just diabetes, this must just be what it is. And there's nothing I can do about it. And it's completely understandable to reach that spot. I probably would have to like, I think all the time. Like if this happened to me and not to Arden, I don't imagine I'd be very good at this. Like it was the desire to help art and that helped me push through all the stuff that I didn't understand that was you know,

Katy 1:12:10
and now you have so much knowledge, it's like, it would be hard to you can't unknow everything that you know, now, it would be kind of crazy to imagine somebody doing something like, like this person you're talking about who said Actually, she knew how to take care of herself, but she just had to make a mental shift to do it. And that I think that can be the part of the habit formation, like,

Scott Benner 1:12:32
Yeah, I agree with you too. And you have to, it's, it's sort of like anything else. Like if you see it getting away from you, you have to draw a line in the sand somewhere in the future and say, Alright, if we get to that, I have to stop myself. But at this point, now, mismanagement for Arden means more of like a 5859, a one C. And that and that I do attribute to what you're saying. Just the idea that like I, you know, in the podcast is really helped me with it, because I had all this information coming in. But there just can be no doubt that talking about it just made it stronger. Like it feels like it feels like maybe I you know, I had this strength, but now it's just multiplied over and over again. And it's from talking to people, like now messing up looks more like a five, nine. Yeah, at any point. And I don't even think about a one C and three months anymore. Like, now there's apps like I look in sugar mate, none or you know, you use Dexcom clarity and you say, Alright, where have I been in the last 10 days? You know, like, and Alright, in the last 10 days, this has happened or you sometimes you look in like the last two days, she's been a six, two. But yeah, but for the last 10 days, she's been a five, five and you just say okay, like, there's a reason for that, you know, hormones or whatever, and you just kind of can't. It's just like you're driving. Did you know what I mean? Like, you know, eventually you've been driving for so long. You don't know your driving anymore. Like you've just you've been doing it for so many years. You get in the car, the car goes, you don't hit things. You don't come close to having an accident. Sometimes you're not even looking up you feels like you know, like it's just I yeah, I know how to do this now. Just work completely autopilot. Yeah, yeah, I think that happens for people eventually, with diabetes. It's just very hard to believe that it's going to happen in the beginning, when someone says Don't worry. Diabetes is always gonna be hard, but you're going to get so good at it that one day, it's gonna feel easy.

Katy 1:14:23
Yeah, you know, yeah, of course. And I will say it helps to have things. It helps to have some, like, the podcasts can also offer for people. A little reason to kind of learn about something new or try something different or adapt so you don't get to autopilot. ish.

Scott Benner 1:14:45
Yeah. Well, you talked about earlier, like you kind of age through it to the point where you're just like, you start. It's not the right way to do things anymore. And this is a constant conversation. People are always going to come in and we're going to talk about things that are newer, I mean, I have ever We hope that maybe even by the time this goes up, Arden will be using Omni pod five. And that'll be a new way to talk about diabetes, right? Yeah. And people can keep

Katy 1:15:11
hoping to get an omni pod. Yeah. So one small point about the Slovenian healthcare versus us healthcare. If I can just list a pro and a con real quick, because I've been meaning to, I'm making a mental note of things I don't want to forget. Um, yeah, so I actually had the G six Dexcom in California, but they don't have it here. So I had it for less than a year, or maybe just over a year in California before I came here, and then had to switch back to the g4, which I had never had before. Wow. And it's less accurate. And you have to have a receiver that you carry with you instead of having it on your phone. Right. And I don't know it's bulkier. And just, you know, these are things that don't really matter. Like when you get when it's the idea of having a Dexcom or not having a Dexcom I'm very thankful. But it's a weird situation that I also can't get an omni pod here. Because unless I somehow managed to get one in California and have somebody send it, which there's no way I could do without insurance. Right. So, yeah, so there are some real limiting factors about just being in a country that's not the kind of this the basis of where things start a lot of the time. Yeah, um,

Scott Benner 1:16:42
you know, I've spoken to wealthy people who live in like, I think Saudi Arabia, and they'll get on a plane and fly here and buy stuff cash, and then fly back with it. Like that's how far they have to go to get the the insulin pump that they want, or this CGM.

Katy 1:16:57
Yeah, that's nuts. Yeah. But you're proving something really,

Scott Benner 1:17:00
I mean, have you a one see like this through pregnancy with the g4 really is a good like, wake up call for people who are, you know, always complaining like this? This? You know, where's the seven? You know, like, when's the next one coming out? Like, you got really good technology already? You know?

Katy 1:17:16
Yeah. And, you know, yeah, it works. It's not quite as accurate, but it's still pretty accurate. And I have the, you know, the fat No, I'm not freezeout. What is it? The one touch Contour? Next One? Yeah, thank you. I have this pretty good blood sugar tester. And they're usually fairly close together. Yeah. So, you know, but this is how I know that it's, this one is less accurate than the previous one. Because that's the other thing. That's a big difference, right? With the GS six. You don't have to do the calibration. So I got really spoiled. Yeah.

Scott Benner 1:17:56
But you're saying you can tell the difference between the six and the four, the Dexcom. Because you have the Contour Next One meter, and you know how it the accuracy of it goes, which learn more about contour next, come forward slash juicebox. I don't usually do that. But it felt like it fits right. I was very smooth. Thank you. Oh, yeah. Not him.

Katy 1:18:16
So that's a con I wanted to mention. But a pro of being here, for sure. Definitely. Definitely, is that when I first got here, and they said, Okay, we're gonna just run some routine tests, because you're a type one diabetic, and they did a circulation check with my put some bans on my wrists and ankles and checked out, my circulation was in my extremities. They did an EKG to check kind of my heart rhythms. They did some basic eye exams, that everything was covered by insurance, many, just a lot more preventative measures were taken. And they said, this is routine. They do it for all their type one diabetics, right. And it's, I mean, of course, they're like, yeah, it's because we care. And as if the US doctors don't care, they just do it for the money. But, but it is true that there's one payer source here. And so when there's complications, the same payer sources paying for the recovery for that transplants, for the negative outcomes, dialysis,

Scott Benner 1:19:25
they're trying to huge, its cost cut. They're literally trying to stop you from getting sick. So that doesn't cost them more money down the road. That's great.

Katy 1:19:31
I mean, the individual doctors in Asia and the US care,

Scott Benner 1:19:35
of course, yeah. But the system set up to one system set up to stop you from getting sick and the other system set up to take care of you once you get sick.

Katy 1:19:43
Yeah, exactly. And in the US, you know, I'm an occupational therapist. So I've seen it a lot. I've seen patients who they're, you know, they're deemed non compliant and they're kicked down the road to the next higher level of care. And it's just kind of crazy to think about how our system is set up that if somebody is having higher and higher level complications, you can push them down the road. Somebody else has to pay for it at that point. Yeah.

Scott Benner 1:20:13
No, it's not here. And here, you're getting a better a better thing now. Yeah. Listen, I think we should be more worried about preventative than we are about, just, you know, but it's a very American way. Right? Like, it's like getting on a ball. Like, I wonder how long I can sit on this thing before it'll throw me like, I wonder how long I can live. ignore my health until, like, the buzzer goes off, and then I'll pay attention that sort of Yeah, that's right. And I don't know that that's not a human thing. But we definitely support it here with the way things are set up.

Katy 1:20:45
And again, you know, in the US, we're all very used to it. So it doesn't seem weird at all. Like, it actually seems weird to me to come to Slovenia, and like, how can you guys, I'll just take this for granted. It's so amazing. And people here are complaining about the health care system. And they have different complaints, but they really don't appreciate it. People are not thrilled about their health care system here. Listen,

Scott Benner 1:21:08
it would be nice if people appreciated things, but at the same time, I think some of that complaining is what continues to push that forward. You already mean like it makes people your RA will make it better. You don't I mean, and then the and then you do when you do when you do it's hard. I think it's easier macro to see the success and the and the and how things are, are improving in a lot of different ways. But when you're right there in it, you just like, you know, what the hell, like do a better job for me right now. I think they both You know, there's a way to think about both things where you can be happy, but yeah, I totally agree. Not a lot of people get the opportunity to step back. Alright, well, is there anything else that we didn't say?

Katy 1:21:48
Okay, yes, sorry. There's one tiny thing that's really haunting me. I messed up my nephew's birthday. Just want it cuz he's definitely gonna listen to this. I just want to say, I'm pretty sure he is turning 21 this year, and that I messed that up before so I apologize.

Scott Benner 1:22:03
I can't believe that was the last thing but okay. First Name.

Katy 1:22:08
Anyway, yeah, sorry. Otherwise, no, I think we covered

Scott Benner 1:22:13
what's your nephew's first name? His name is Nick. Nick, happy birthday. Whether you're 20 or 21, your aunt apparently cares about you. And you got to cut her a break because she has something that they call placenta brain.

Katy 1:22:27
Yeah, he's just gonna say can I get off on pregnancy brain on this one? Totally

Scott Benner 1:22:30
let that go. I will totally let that go. 100%. All right. Well, listen, you were absolutely delightful. I'm super excited that we did this. Thank you very, very much.

Katy 1:22:40
Thank you really, for having me. It's been really nice. And I I do really appreciate having the podcast out there. And during the pregnancy, it's made a difference for me. So

Scott Benner 1:22:48
I I appreciate knowing that and I'm, I'm thrilled honestly, anytime I hear that it's been helpful for people. It makes me feel a little like jello inside so that I get a burst.

Well, I know you must be thinking, my goodness, Scott, you've done it again, another amazing episode of the Juicebox Podcast. I agree. Huge thanks to Katie for coming on the show and sharing her story. I also like to thank touched by type one.org for their support. And the Contour Next One blood glucose meter, which you can learn more about at Contour Next one.com forward slash juicebox. really dig in, figure out if you've got the best meter and check out touched by type one.org. Oh, did I did I forget to say T one d exchange.org. forward slash juicebox. Go take that survey. When you do you'll be supporting people with type one diabetes. And the show you must be a US resident who has type one, or is the caregiver of a person with type one.

I have a little update here for you. I got a lot of pictures of a very cute baby. Anyway, she ended up having a very healthy baby boy at 39 plus four weeks, at 39 plus four weeks, and he had no low blood sugars. And all of his organs and lungs were fully developed. Yeah, that being said, likely because I have diabetes and also because the baby was big to begin with. Oh wow, baby was 10 pounds six ounces and delivered by C section. After five hours of laboring and not dilating more than three centimeters you boo. Hospitals actually great. They were when I clearly communicated that I wanted to manage my own diabetes. And my blood sugar's were between 3.5 and five during the entire laboring process. She says that she forgot to turn off her Temp Basal during the surgery and ended up going high for several hours. She also thinks that might have been some adrenaline. The only funky thing she says. Is is I was in the hospital for four days after the surgery and the standard and Slovene that's a standard in Slovenia for hospitals after c section. And they put her on a type two diabetic meal plan, she said which was a bit goofy. Otherwise, I want to share just a couple of my pictures of my guy. Thanks for doing the podcast with me. Now I'm still figuring out my new Basal rates and insulin to carb ratios a little bit and having them pretty much figured out. I have to say that I remind myself often about what you were saying during the podcast. When you asked how my control will be after birth. The question is motivating me to ensure that I maintain as tight of control as possible. Now in these months despite my new and crazy schedule, okay, that's it another baby not named Scott in the books.

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#547 Type 1 and ADHD

Nidia's son has Type 1 diabetes and ADHD.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Friends Hello, and welcome to Episode 547 of the Juicebox Podcast.

Today, my guest is Nidia. And she is the mother of a child with Type One Diabetes, who also has ADHD. We're going to talk about that, and a lot more this conversation as I'm thinking back on it now, I think involve Japan. Moving was a lot happening. I hope you enjoy it. I've made the Edit to this episode like three weeks ago. So at this very moment, as I'm putting together 12 episodes in a row so that I can go on that even vacation going away for the weekend to go to a wedding. I'm just trying to get ahead. Everything's running together on the a little bit. I apologize for that. But nidia was terrific that I remember I remember having a really warm and wonderful conversation with her. And I hope that while you're listening, you remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please always consult a physician before making any changes to your health care plan, or becoming bold with insulin.

This episode of The Juicebox Podcast is brought to you through the generous support of touched by type one, learn more about them at touched by type one.org or on their Facebook page, or Instagram. Do you remember when PBS used to do that, like today's programming is brought to you through the generous support of our sponsors, and then they would list them off and you could buy an umbrella or something like that. I should start doing that at sounded very official. Anyway, one other thing before I get you to the show, there are a number of people who support me in the work I do through buy me a coffee.com forward slash Juicebox Podcast. And there were a number of people that came in this week to buy me a cup of coffee. But I'm here to list the ones who became members. Someone who used the name someone. Sue Yoli. Sarah, Amy, Steven. Connie, Anna. Laura marinda. Melanie, another someone. Corey, Jessica. Nancy, Sue Shannon, Marilyn, Alyssa laryssa, Melissa, Leah blue, Julia, Julie, Grace, Daniel, Jennifer. And Jeanette. Thank you so much, everyone. That is just very kind of you. And I really appreciate it. Buy me a coffee.com forward slash Juicebox Podcast.

Nidia 2:49
I was like nervous. Now I get why people get nervous because you're now like a celebrity.

Scott Benner 2:56
That's silly. You realize. Yeah, for the type one diabetic community, you're like a celebrity or like, I will, psycho if this makes you feel better. I woke up this morning, late. So I'm still sitting here in a pair of sweat pants, like, excited to take a shower after you and I are finished.

Nidia 3:15
You know, I thought that was the case. I'm like, I'm sure because you're so you've done this for so many years. Yeah, yeah, he's

Unknown Speaker 3:22
probably still asleep.

Scott Benner 3:23
I'm not prepping for like, I've been up for 45 minutes. Don't get me wrong, but like I took the dogs out and fed them. And, you know, like, that's pretty much it. And now we'll do this. I the idea that there's any celebrity attached to this is is patently ridiculous. Don't worry. All right, fine. So you don't take it? No, no, I appreciate it. I really don't. But it just you don't need to be. You know, it's funny. You don't need to be nervous and yet, okay. I'm always nervous. So I don't know what to say about that. Go ahead whenever you're ready.

Nidia 3:55
My name is Nidia. And for the purposes of your podcast. I am the mother of an 11 year old type one diabetic. I I'll use his name. His name is Santiago. And we've been added for almost like three and a half years almost 40. This is like we're starting our fourth year. It'll be his fourth year in August. So he was diagnosed august of 2017.

Scott Benner 4:29
When he was like seven ish. Yeah, I think he was eight. He was he eight? Yeah, he'll be 12 this year. I like it when you can't remember the dates anymore. I know. Yeah. I had to think about it. My wife's like remember. We're talking about when Arden was diagnosed and and she looked at me She's like, you don't know the date. Right. As a guy. I have no idea. I said I don't I know it's in August.

Nidia 4:55
So you don't know the date. I know the date. August 24 the 24th is when we went to the hospital August 24,

Scott Benner 5:02
is when you went to the hospital. I wonder if Arden was the 22nd. Baby. Or if I'm remembering the 22nd because that's her birthday. There's no way she's diagnosed on the same day as her birth. You said a couple weeks after her second birthday. I think I remember that. Yes. 100%. So she's the she was born. July 22. So a few weeks later at 14 days, I don't know for you, you were very literal when I said a couple of weeks. Okay, sorry. Yeah, you're right, August sometime. Yeah. When you thought when I say a couple of weeks, what you should infer from that is I don't remember the Exactly. Okay. Okay, I like that. You're like fewest three, Scott, a couple is two and dammit. 14 days after the 22nd. It's a bit harder.

Nidia 5:49
I'm a math person. I'm actually a math teacher. So you say a couple weeks? I'm like 14 days.

Scott Benner 5:58
Gotcha. I didn't ask me. I have to be honest with you. I'm going to I'm going on my blog. Now. Let's see if I can figure it out. Go ahead. I'm scrolling. It's a very well written diagnosis story. I should write my own. Before I forget, the more details and I already have the details will leave you well. There you go. I did not put the date in. I know I launched the blog in 2007. was the year after what I have had the foresight to do it on the exact day.

Unknown Speaker 6:40
Probably

Scott Benner 6:42
probably a lot of planning, doesn't it? Okay, so Santiago's is, tell me a little bit about his diagnosis, please.

Nidia 6:53
Okay, so let me take you way back. So we're a military family.

And we were stationed in Okinawa, Japan, from 2013, no, 14, sorry. 2017. Yes, that's three years. And that was really tough for me, because we had been on the west coast in California for 17 years, you know, like I had never moved, I didn't want to move. And I, I hated the idea of being overseas because I was away from my family even more. I'm originally from El Paso, Texas. And so, you know, we were in San Diego. So that's not too far. It's a 12 hour drive. And I just hated that idea. But Well, too bad military, you go or he goes alone, and I wasn't gonna let that happen. Not with three kids by you know, I had, we had three kids at that time. So we left were there. And the last year was school year 2016 through 2017. My mom gets sick. And so I mean, she's always had health problems and stuff. And, but this time, it was a different you know, she lost weight. She couldn't eat, she was in pain. She cry on the phone with me all the time. And you know, I was I was away in Okinawa, she was in Texas, and I, that's what I feared the most, you know, from going to Okinawa, something would happen and it did the last year. And so she got sick, she got diagnosed, I flew over because she was gonna have a procedure done in like, late November. So we get to, well, I get I, by that time, I had had my fourth child, which is a little girl, I had three boys. And I finally had a little girl. So I took her with me and I left my three boys behind. And I was supposed to only be there for the operation. We were thinking it was just a tumor. But you know, we find out it's cancer stage four. And so, gosh, I always get emotional. Sorry.

Scott Benner 9:24
No, it's fine. I didn't know this was gonna happen. Like, as you started talking, I was like, what's about to happen here?

Nidia 9:32
So what I always do, you know, and I, and I, I like to cry it out because it just it's always on the back of my mind. It's always it's something that you know, it's like the grief that you always carry that just kind of pops up. Yeah, and it's okay. I'm okay with that. I'm okay crying. And I'm sorry if I make you uncomfortable, but I'm okay. crying. Oh,

Scott Benner 9:57
don't worry. I'll be crying by the time we're done. So let me just do one thing you took your daughter because she was little. Yeah. Where the boys sort of old enough this they were their father was at the idea.

Nidia 10:10
Yeah, kind of my youngest was three I think at that time. Let me see. Yeah, he was three because he was born in 2013. So he was three. But he went to daycare, because I, I was online teaching and stuff. And, and I would always take him to daycare because I didn't have time to him and a little, my little girl, I would always take them to daycare because I didn't have time to do online school. And it's not like I'm teaching, but I'm grading papers, and I'm replying to emails, and I couldn't do it with them being at home. So they always went to daycare. So that was set up nicely for my husband, for him to take care of that three year old because it was an all day daycare. So I took my little girl with me and it was only supposed to be two weeks. So find out you know, she has cancer and she went through her operation. She was in the rehab, and she begged me, you know, just come back and, and I said, Okay, I'm staying. And so, and my mother in law was also like, yeah, you should stay. And I said, Okay, well, I'm staying indefinitely. So I ended up staying from November all the way to April. Yeah, so that was it was so tough on me. I mean, me emotionally and the kids obviously, but me because I'd have these dreams of that I lose my kids. Like, I just went to the park and I left them there and I left and you know, and I was because I left my three year old because he you know, the other ones, they can find their way home, the three year old. Ah, that hurts so bad. Anyway, back to the point,

Scott Benner 11:49
packaging the three year old up and shipping them to you that I think should have a couple holes in the side of the box that kids probably going to be fine. As long as you write handled with care on the side of it. I've always had the boxes that are marked like that always show up in my house very, very well. Maybe that that would have helped you some of my pain, but you know that I really understand. You know, obviously you just felt like you abandoned your daughter. And and we know you didn't buy it. That's how it was striking you. And you're describing five months or so right that you were gone a long time. It is Yeah. And I was were you caring for your mom, or were you just there supportive? I

Nidia 12:31
was no, I was helping my dad because it's only my dad. Help. I was helping him take care of her with whatever you need. Because you know, he's a man. And I mean, God bless him. He's wonderful. And I love him. He's, he took care of her so well. But I was there to also emotionally help him go through this, you know, and help each other go through this and just, you know, taking care of my mom's needs whenever she needed to be based. Or I mean, he did it too. Don't get me wrong, but

Scott Benner 13:07
it gets so tiring. And he's probably older too. How old was your mom? Yes. She was 70 370. My gosh. And your father similar age? Yes. He's seven. He was 75. Yeah, he's two years older than okay. Yeah. So help. Help is definitely needed.

Nidia 13:23
Yeah. And and, you know, I have two other brothers, but my younger one, he's got his own family and the older one. He's a lost soul. You know, he's like, alcohol drugs. I mean, that's a whole different story. Yeah, exactly. We were not gonna ask him for help. In fact, he was more damage, you know, then help so. So I was there. And and I'm the only girl in the family and it's kind of expected. I don't know. No, I

Scott Benner 13:55
understand what you're saying. I don't understand why it happens like this. But it definitely does happen like this. Because you said something so interesting. You said, you know, my brother has his own family. But you have a family and your brother wasn't like helping going, Oh, my sister can't be here. She has a family. It's just way better. Yeah, that's true.

Nidia 14:11
Yeah. But you know, he's a teacher and he has his own job. And I get Yeah, he he couldn't be there. 24 seven and, and I was working online, and that kind of just worked out. Because I could work from anywhere. Yeah.

Scott Benner 14:23
So I got caught. I don't want to I don't want to take you through the pain of your mom. And there's no reason to I just have this feeling like you're gonna tell me that while you were gone. Your son was diagnosed with type one is No.

Unknown Speaker 14:36
No, okay.

Nidia 14:37
But but that's where it all kind of began. I think that stress that was put on him without his mom for almost, you know, half a year was a big stress on him, don't you think?

Scott Benner 14:48
I think that when I look back and look at all the things, medical that I've seen pop up in people's lives that are wrapped around autoimmune somehow there is some sort of a major stressor at some Point, which sucks because it leaves people with the idea that if a major stressor never happened, this might not have ever happened to me. But you know, at some point in life, something stressful is going to happen. So,

Nidia 15:13
yeah, it'll happen. You're right at some point. And so Who would have known? But I mean, I'm not pinpointing it to that. But that was a big stressor on him. And well, let me let me take you back even further when he was born. That was in 2009. We had just moved from I mean, okay. From San Diego, California to Oceanside, California, which is like 50 miles away. And he was, you know, and he was born in Oceanside. Because my husband, you know, changed jobs. And I was pregnant. I had just left the job that I had in San Diego at you know, I had stress at that time. And when he was born, my husband's like, oh, by the way, I'm getting deployed to Afghanistan. Yeah, to Afghanistan. And so you know, that I was so stressed and the baby he was a baby, he. I remember thinking when he woke up in the middle of night crying, crying, crying, I'd be like, Oh my gosh, when can I return this baby? And then I'd be like, Oh my gosh, this is my baby. I can't return him anywhere. And I was like, overwhelmed with this, like, Oh my gosh, cuz he would cry so much.

Scott Benner 16:34
Seriously, raising a child is a hell escape. And especially when they start crying, or, you know, my son threw up a lot in the beginning, you know? Yeah, stuff like that. It's just, you're not ready for it is the truth. You know,

Nidia 16:46
he was my second child. But still Yeah, it was very overwhelming because it there's like a five year gap between my firstborn and him.

Scott Benner 16:54
Yeah, now it's just it's just a different thing. Like now if you could put me if you could take my head and drop it in a 25 year old body? I could raise a kid like, yeah. Yeah, because now I know what to ignore and what to pay attention to what's important and what's not. And I know what's scary and what isn't. Now I have all the information and none of the energy. I'd be a terrific parent. I know the energy though. But in truth, if you brought a baby here, I would die in like three weeks. You know, what? Well, you're ready to be a grandparent, baby. Please. There's some days with this autoimmune stuff. I gotta tell you, I'm just ready to get to the end. Like whatever that is, like, let's, let's fast forward. Please. Hear that's the end. I would like this to stop, please. But No, but seriously, like, sorry, no, no, no,

Nidia 17:51
we were back. Yeah. Let me go back to the story. So I remember him spitting up a lot as a baby. And sorry, I'm gonna, I'm gonna take you back even more in the last like, trimester of my pregnancy, like the last month or so I remember. Like my urine smelling very sweet. Like, like, I never had maple syrup. But I think like maple syrup. It was very sweet. And that kind of struck me. I'm like, yeah, that's kind of weird that this never happened with my first child. Anyway, I wonder if anyone else had, you know, had that in their last few months of pregnancy and has a type one child. But anyway, he sped up a lot as a baby. He wouldn't. He didn't like for us to hold him like laying down. He always wanted to be upright, like over your shoulder. I remember that. And as he grew, I remember him having like, really poor eye contact with us. He was very what is that word that they don't think about the consequences. Not a daredevil, he impulsive. Thank you. He was very impulsive. And he was like a little Daredevil. I remember the word Park core, because he would like jump around at that time. parkour was like really popular. But he was two years old. He didn't know anything about you know, popular things. There's all over the place. Yeah, he would jump off of you know, small benches and didn't think like, I'm gonna get hurt. Were my my first born who Yeah, I know. He was already five but at that age, he he knew there were consequences. He he was more laid back and he more settled down. So I noticed that difference in in. In my type one. He was very different than brother and When I tried to teach him stuff like, letters and stuff before he went into kindergarten, he would close his eyes on me. And he went open them. And I couldn't teach him anything. He went into kindergarten, knowing two letters, love letter O, and the letter X. That's all he knew. And I was so embarrassed, you know, but I, you can't teach your child. I mean, I didn't also didn't want to, to hate learning. So I just backed off.

Scott Benner 20:30
And so anytime you tried to, like, direct him with something or focus on something, he just stopped you.

Nidia 20:35
Yeah, he would just close his eyes. And didn't want to hear it. So I he went into kindergarten knowing nothing, almost i don't i don't think he didn't even know how to, like write his name. Anyway, that's that.

Scott Benner 20:50
Do you realize about ADHD at that point? Or how long was I

Nidia 20:54
didn't hear that? I? I, you know, I didn't think anything of about ADHD. I just thought I didn't I didn't think anything. I just thought what a difficult child. He's always been a difficult child. He's hard. He's hard to love. That's what I tell him. You're hard to love because of the of your behavior. And I'm so mean and strict. I mean, I guess I don't know. I'm just trying to teach him well.

Scott Benner 21:20
So he is, is ADHD, like, is it autoimmune? How do people think, how does it thought of?

Nidia 21:29
I don't think it's autoimmune. I think there's something with their brain chemistry or something like that. That it's different. It's wired differently. And I mean, he's, he is kind of weird, like, ever since he was small, you know, we're having a conversation, whatever. And he's like, Oh, my gosh, look at that bug. And it's like, on the wall, something you would ignore completely. And he will focus on the tiniest, insignificant things. And, oh, video games, he could be there all day.

Wonder why, you know, you can focus on that.

Scott Benner 22:07
Yeah. That that's no problem. School still. Is school still on the shoe? As he's older? No, because he's on medication. Ah, okay. I have to be honest, some studies indicate that both children and adults can develop ADHD infections and an autoimmune response can cause encephalitis brain formation, which may result in behavioral changes? Or I don't know if that's very, maybe that's a very specific thing. I'm not certain. But

Nidia 22:33
let me let me take you back again, to the diagnosis. Sorry. So we Yeah, so this, you know, all this poor eye contact and refusal to learn and carried him into kindergarten. And so he's still okay, in kindergarten, you know, he didn't have a, he, he's not diagnosed with type one. But in kindergarten, his teacher tells me he rolls around on the carpet doesn't listen. He doesn't do his work when you know, that you get a worksheet and it just sits there. Unless someone's right there, telling him exactly what to do. Oh, Lord. So that's when I took them to. I'm telling you his his ADHD diagnosis and his type one diagnosis. At the same time, though, it's

Scott Benner 23:22
fine, because after we get through it, I want to understand how it impacts your life with type one and all that, so that's fine. Oh, gosh, yes. So can I ask that question before we move forward? Please don't take this wrong way. Do you have ADHD?

Nidia 23:35
I do. You know, I know my brother probably does. I think I

Scott Benner 23:50
You can't blame me for doing that. I grew up on 70s and 80s. Television where there was a cliffhanger like every week, just how my brain works. I waited entire summer to find out who shot Jr. It wasn't that exciting when you found out. I'm just here real quick to tell you about touched by type one. It's a type one diabetes organization whose goal is to raise money towards the cure, and help people living with Type One Diabetes. That really is that you should learn more about them at touched by type one.org. We're also on Facebook and Instagram. But you really just take a minute and check out the website. They're doing some pretty great stuff down there. Touched by type one.org. While I have your attention, I'm going to remind you that there is a series within the podcast. Actually there are a number of them. Just going to go over them super quickly. And that's for new listeners. And then we're right back to it. There is the diabetes pro tip series. I can't tell you how proud I am of those. I hope you find them. They begin at Episode 210 in your podcast player and are listed at diet BDS pro tip comm also at that link is the defining diabetes series, which I don't even know started so long ago, I couldn't even tell you when but somewhere in the two hundreds, and again, they're also listed at diabetes pro tip calm, and they're on the front page of Juicebox. Podcast calm. The diabetes variable series is really picking up steam, there's, I think like eight or nine episodes of those at this point, really wonderful short conversations talking about the different variables that impact your life with type one. There's the after dark series, where we talked about everything from having sex with Type One Diabetes, to complications to getting high while you have type one and having bipolar, just a bunch of stuff that you don't hear about usually. But we talked about here on the podcast, there's a series about algorithm pumping. How people eat all different kinds of how people eat episodes flexitarian intermittent fasting, Bernstein fodmap on and on and on. I'm proud of those series, and I hope you find them can be tough. I know with a podcast that has over 500 episodes to find 10 or 20 mixed in somewhere. And that's why you need to go to Juicebox Podcast calm or diabetes pro tip comm to find them. I really think there'll be worth your while. Alright, that's it for today, touched by type one.org. And then check out the you know, make sure you understand everything that's inside the podcast, the show has really become a tapestry of information about diabetes, and I'm trying to help you find all the patches because I know some of them might be blending in this point. Hey, while you're at Juicebox Podcast, calm up at the top, there's a link to the free private Facebook group. There are over 15,000 people in there now talking about type one diabetes, I bet you have a lot in common with them. That's about it. Alright, let's get back to Nydia. Find out if she has ADHD.

No, I don't. Okay, because you just have a your your storytelling style is interesting. It's different than most people that that I talked to. I want to get everything in there. How's that? You feel compelled not to miss anything? Yeah, I want to get everything in there. And I know you don't have that much time. Oh, you're fine. You're telling us it's like a Quentin Tarantino movie. Like john travolta is alive and he's dead. But he's alive again. I'm just

Nidia 27:25
yeah. And it happened. Yeah, it happened so long ago, too. And I just kind of want to go in chronological order. So I don't miss thing. You don't have to

Scott Benner 27:31
feel any pressure. But I, I appreciate I just was like, I gotta ask because you jump back and forth a lot in your story. So I was like, sorry, no, no, don't be sorry. I'm just checking into things. Well, however this goes is how it goes. You don't need to feel pressure about that. Okay, but yeah, so Okay, so he's in school acts like you expect in kindergarten, you know, there's not a lot to do, but you're saying he can focus on some things, but not on other things. And and I don't know what to do. Like, I don't know what I would do. If you put me in that situation? I'm sure I would. Yeah, but, you know,

Nidia 28:05
teacher told me and she, I don't know if it was her idea or my idea to get him tested for ADHD. And so we went through the process, he gets a Vanderbilt assessment, which is like a 10. Like, not, it's not a test, it's a questionnaire. So the teacher fills it out. The mother fills it out and somebody else who helps or you know, who sees him interact. And he gets like, threes on fails to give attention to detail or makes careless mistakes in schoolwork. A three very often has difficulty sustaining attention to tasks or activities that three does not seem to listen when spoken to directly three, so everything but teacher fills out points to ADHD, this is kindergarten. Yeah. And I read your I mean, I read. I listened to your red dye story. Okay. And I, somebody did tell me about that. But you know, I don't know, it's just, to me, just that even overwhelming, just the reading labels. And I'll try but no, I think it was beyond my red dye. And I have two other kids that I was pregnant. And you know, I'm like, I can't, I can't, I can't do the red try the red dye thing I barely have, you know, enough time to give him attention. As it is I'm not gonna be reading but I mean, not that that's bad. I'm sure if you have you know,

well, I have time to do that.

Scott Benner 29:42
I think it's interesting with a lot of autoimmune stuff and, and things like this, that you think there might be an underlying cause I think there's a difference between an underlying cause that you can impact and an underlying causes already done, what it's going to do. And you know what he mean? And it's so it's hard and it's hard. Hard to know. Because there are just so many streams of information. And the only way you can really figure it out is online. And people and with people sharing their experiences, right. And so it works for some things like diabetes, like, I think that this podcast works well for people who have type one or using it as one. But when you start getting into, you know, I have this thing, and it's because of my dogs, you know, fleas, but another person has the same thing. And it's because it's an autoimmune disorder, but a third person has the same, you know, symptom, but it's from something else. How do you know which one of those things is the thing that's impacting you? Or even if, even if they are, you know, like, maybe yours is another thing. That's that. And so that is a rapid change. Yeah, very, very difficult to figure out what some people figured out by mistake. Some people do very specific, like eliminations of things, like take everything away and start over again. But I've also seen, you know, bright people try elimination diets for issues they're having with their body, and they never come to an answer. Yep. So

Nidia 31:07
and yeah, and I was not willing. I mean, I, you know, I just had a baby. I had just had a baby by this, another baby by this point. So I have four kids. I was not going to try the red dye examination thing with the other. No, it's too much.

Scott Benner 31:22
This is the truth. Listen, the truth is, you could have done it, and then nothing might have happened. And then true.

Unknown Speaker 31:28
I don't know, where do you go high waisted?

Scott Benner 31:31
Well, yeah, it's not even the waste of time. It's the like, what's next? And how? And how do I even find out what's next, then it's just and doctors are not always, you know, it's such a, it's such a, we're getting away from diabetes for a second, you go to a doctor and you say, look, these are my symptoms. And all a doctor does is go back to credited research and see what your symptoms point to. It's not like a doctor or some magical person who hears what you say, and then goes, Oh, I know exactly what this is. You got to stop drinking iced tea. You don't even like it's not it's not like that. It's um, it's very, you know, it's, it's eliminating things, it's coming up with possibilities, and then eliminate them. And then more and more and more. And I don't know, like, doctors have trouble doing it. People have trouble doing it. mothers have trouble doing it. It's not an easy thing to get something like this is, you know, whatever. type one. Yeah. And I yeah, you know, it's a lot of it's a lot of confusing stuff. And in the meantime, you're going through terrible things around it,

Nidia 32:33
as well. Exactly. And like, and the terrible thing is he was falling behind in school, which I didn't like he got his he got diagnosed at the end of kindergarten. And he was below reading level at that time. You know, he was, I saw it right now. And I've kept a lot of the papers, excuse me, that they gave me and it said, he was reading below, grade level. So first grade comes around, and I get I put them on medication. He started on Ritalin. And that was scary. He acted like a zombie and he would fall easily. He just I got scared. No, not this one. But I kept him on it for a little bit. And it did help his teachers noticed. They would tell me Yeah, he's a little more focused. But I didn't like it.

Scott Benner 33:26
Yeah, and it wasn't a magic pill either. It wasn't like he took it exactly. It's not a match. I mean, it kind of sort of I mean, I

Nidia 33:34
it does help a lot. But But you're right. It's not a magic pill, it takes away their appetite. They they do kind of change their their behavior, which sometimes is good. And for him, it was good. He was able to pay attention. He was able to learn more. And and it is good. So but so I started him on Ritalin that happened. And then I switched to someone told me about conservator. So I got him on concert. And that worked better for the rest of the school year. First grade. Okay. So conservative did good, except at the end of the day, when it wore off. He was really he was yelling, he was cranky enemy. He does that but it was over the top. So I decided, you know, I'm going to not do anything starting his second grade year. And so I did it we we didn't have him on any medication. And they asked us and we said, well, we're just gonna see what happens. Hopefully, you know, he grew he matured. Maybe he doesn't need it. Well, he know, same thing. Second grade comes around and no, he's he's still not mature. He's, although he was a little better. Because I guess you know, the first year, his first grade year, I think he got used to the idea of doing work and learning and so I think that it helped a lot but second grade, he still needed it in my opinion, but we didn't Dad was very reluctant to go to vacation. And I was too at the beginning and a lot of people are. And I felt guilty and I felt shame like, Oh my gosh, I've got my kid on ADHD medication. But honestly,

at that point, I

felt that way.

But I don't anymore. And I I feel bad when people say like, Oh, my kid has ADHD, and then someone's like, will try to change their diet or try to do this or, you know, like to avoid medication. And I really don't think people should shame someone for using medication with their child because some of us need it.

Scott Benner 35:41
Yeah, I listen, I think if you need it, you need it. I wonder, do you feel like they were trying to shame you by saying don't try medication do something else? Or did you just feel shame about it?

Nidia 35:52
I just felt shame about it. Just because it's, it's out there. You know, like, you read things or people on TV or to social media are very quick to judge that. And I, I kind of knew that even though no one really shamed me. Except my husband, he's like, I don't like, you know, what if we try it without and but I was I just went with it. And excuse me, and it helped so much and I don't regret it. And he's still on medication, you know, so I decision I

Scott Benner 36:32
What did you find that worked for him?

Nidia 36:34
Okay, so, finally, so second grade, no medication. Let me go with my timeline. So that's what I left him for five months I came back. We enjoy you know, after my mom passed away, I I we had like three months left in Okinawa. I enjoyed my summer with them, I would take them to the beach. That did lots of things. But what I remember specifically was when we went to the beach one time he got cut his his his on his foot, and it kind of look like athlete's foot. And but it wasn't it was a cut and it wouldn't heal. It wouldn't heal, it wouldn't heal. And then my husband's like, well, maybe it's athletes hood and he put some antifungal. It still won't appeal, but slowly it healed. I remember that specifically. And I also remember one time he ate a bunch of Red Velvet Oreo cookies. And he got really sick. He threw it all up in his room and it was red and the carpet got big stain on it. But I also remember another time I left him with a friend and his and my friend, she fed them cereal the whole day. She said, I just said go at it and she fed those and you know cereal?

Unknown Speaker 37:58
Like oh, crap,

Unknown Speaker 37:59
I let them have a cereal the whole day.

Nidia 38:02
Anyway, I remember those things vividly. And I remember also thinking even as a tiny baby all the way, you know, kids feet began to smell, especially when they were crocs. It smells like vinegary. It's a nasty smell. Well, his feet never stunk ever, ever, ever. And I would always tell him your feet smells so good all the time. They never stink. Hmm. Okay. Well, we come back, you know, I we move back to the states in 2017. So that year, you know, my mom passed away. My dad's my dad, my husband's dad also passed away January from cancer, but he had already been diagnosed three years before. So you know, it was a really tough year. And I was, you know, we were were beat up emotionally. And I'm sure the kids felt it. So we went back to El Paso. And we decided to drive because we had a suburban we decided to drive from El Paso to the east coast, where we live. And I'll tell you where we live. We live in Virginia, and that's like a three day drive. During those three during that the first day, I remember looking at him, and I could see his ribs. Like I could see he had like a knot. Not his rib. Well, yeah. Like, I looked at him from behind. He was so thin, and his little ribs would stick out. And I kind of thought and I'm like, Oh my gosh, she's never been this thin. And you know, you're in a car for 12 hours a day and he kept wanting to go to the restroom. And we were like, no, it's ridiculous. It was like, every half hour. So we had him go in water bottles, empty water bottles, and he would fill them up and he would want more water and he was eating a lot and I remember I actually had a type one student when I was teaching because I did teach, you know, face to face. And I remember thinking about the type one student, he was an eighth grader, and I, he would always have to go to the nurse, you know, I think it was right after lunch. So he would always walk in late, and I felt so bad for him because he missed so much material. And I asked him, Hey, how'd you know that you had type one? Like, what were the symptoms? And he told me, oh, I was drinking a lot of water. I was really hungry, but I wouldn't gain weight. And you know, bam, that hit me in the suburban. I was like, we were driving, and I'm like, Oh, my God, could it be? And I looked up the symptoms, and it said, type one. But you know, like you, like you've said on the podcast that you don't know, like, I didn't know anything about type one. But I'm like, it's probably type one. And I had no sense of urgency. I didn't realize how severe he was already in DK or starting DK or something.

Scott Benner 41:01
I mean, I think if you're seeing his ribs, we were pretty far along.

Nidia 41:04
You know, we were and you know, he's a he's a thick kid. He's always been a chubby kid. Like, he's just built big, like big boned. And this, that's not the case for my teenager. And that's not the case for my seven year old. They're really thin. But him and my little girl Oh, my goodness, they're there. You can tell they're like, hefty, and it was unusual for him for Santiago ought to be so thin. But we kept driving, whatever. We had bought a house online, like we had bought a house from Okinawa, we had never seen the house. So we had to sign papers, closing papers. When we got here. We had to sign closing papers and everything. So I was like, okay, it was the weekend almost. And I said, you know, I'm gonna It was a Thursday that we got here. And I said, we want to sign the papers. And he refused some cookies that they were offering him and I was like, that's unlike him. And he was just kind of acting up and, and then on Friday, he slept the once we finished the closing, you know, all the signing all the closing costs, papers, and all that Friday, he slept the whole day, the entire day, he was asleep the whole day. And I remember getting very worried. And when I lifted his head, his little ear was like, bent like folded. And you know, when you when you have that and you're asleep, you wake up and it hurts. Well, he didn't even wake up for that. And that, like, I just, I was like, Oh my gosh, we got to take him to we got to take him somewhere. Right. So my husband's like, well, you want me to buy a glucometer? He's a nurse, by the way. And I said, Yeah, go ahead. So he, you know, he, he was out doing something I don't remember he came back to the house and we tested his blood sugar. It was for 19. Goodness.

We started crying, my husband started crying.

Unknown Speaker 43:12
And

Nidia 43:15
we just took them to the hospital. We didn't even know where the hospital was, you know, we had to use Google Maps because we just got here. Yeah. We show up at the hospital. And my husband's still kind of in denial. Like Could it be a growth spurt? I'm like, no. We know what it is. And it's funny, the doctor that follows there. She actually was the our friend, a friend of ours, a doctor in Okinawa, and she had also come to same place in Virginia. And she's the one who, who told us you know, yeah, he wasn't DK and was diagnosed then. Okay, goodness, that's such a hard story to tell. Sorry.

Unknown Speaker 43:58
But thank you, we,

Nidia 44:02
we just got here. You know, this type one diagnosis. My dad was supposed to leave like a week. My dad came with us. He drove with us. And so he was supposed to leave like a week after we got here. And he ended up staying like, almost a month or two. Cuz we needed him. You know, we were in the hospital with Santiago. We have no one here. You know, we don't know anybody. And thank God he was here because, you know, I have three other kids, the little girl she's five, my teenager and my seven year old and, and well, they needed someone and he was here and he helped and God. But that was a awful, awful time. But oh goodness. I know. It was super unrelated to the ADHD. I know they're completely different. I don't think that the high blood sugars that he was experiencing Wherever related to his behavior.

Scott Benner 45:03
Yeah, I know what you mean. Yeah, yeah, the diabetes came on as its own thing. It wasn't lingering for years and impact me is?

Nidia 45:12
I don't know, I think it's two different things. Yeah. One of them is a brain and the other one's endocrine,

Scott Benner 45:19
it's interesting to listen to you talk about it because you do this thing. But obviously, a lot of people do. But I can hear you while you're talking. How often you search for triggers for things or reasons like in the past, like, I can feel you looking back trying to figure out like, what did this and what did that and I do burdensome it is, but you know, you've you do a really good job on all the podcasts kind of telling people what, it wasn't your fault. It was kind of just gonna happen. And I've accepted that. It's still hard when I think about it. Yeah, I think bag. It's like, Yeah, it really is. But anyway, that's the diagnosis story. That's crazy. And the ADHD came back to haunt us. Listen, I really do want to kind of focus on that for the rest of the way. So yeah, what's it? What what are the impacts of ADHD? And type one being together? How does it mess with

Nidia 46:21
very difficult because so we put them on a new medication starting, I held him back actually, with the diagnosis for for the type one. He was supposed to go into third grade, but I wanted to hold them back in second grade because of this new diagnosis. And I knew the ADHD. And you know, my mom, I had to be with my mom and I couldn't be there for the rest of the school year, he probably fell behind in school. So I said, I'm just gonna keep them in second grade. So I did this new teacher that he got assessed all over again. And yes, he has ADHD again. He he started on Strattera, okay, which is like it's not a stimulant. And I, I actually had what joined a Facebook group. And they recommended that and so I asked the doctor and he's like, Alright, let's try it. Well, it did not do I mean, the teacher would be like, Yeah, he was a little better today, but emotionally that I'm scared of that he would he kept he started saying things like, I wish I was never born. And I looked at one of the side effects is suicidal tendencies. And I'm like, Oh

Unknown Speaker 47:41
my goodness.

Nidia 47:43
steered clear. I'm like nope, I'm out. I don't care if it's a non stimulant. No. Right. And so after that, I don't remember who suggested vyvanse I think it was also a face in the same Facebook group and so I started him on vyvanse and that has been the pill that's worked for us that's been the medication that that works for him and his brain chemistry or whatever and sometimes again, it does take away the the appetite which it helps with the type one it actually it does because you don't eat you know your blood sugar's don't go a pie and so it helps in in that manner. But But what's interesting it also doesn't help that Tim because he's he's high cuz he ate cereal and I didn't Bolus him enough. Oh, I'm so angry. What do you mean you're angry? I am because we have a endo appointment today. And so

Scott Benner 48:47
I always I always amazed me is that people think that their endo is not gonna understand if your blood sugars type perfect. They see all your reports they know it hasn't been perfect.

Nidia 48:56
Yeah, no, no, it's not that but I think like oh my gosh, you know when he takes his agency This is gonna affect it. And and I've been doing such

Scott Benner 49:03
Yeah. All right, today will affect the next day one. See not this one. Don't worry. You'll be alright. Yeah.

Nidia 49:09
And but my end our end oh my gosh, she's amazing. We love her. But she's military. So I don't want to put her in your list.

Scott Benner 49:18
Oh, yeah. I understand. Well, so you tried three is it three or four different medications to get to the vyvanse

Nidia 49:26
this This is the fourth one yeah. vyvanse is the fourth one so yeah, it's not a you know. Try this at work it's the you also have to be a judge like okay, well is he improving in school and behavior like you know, focus and behavior or is it just one or is it yet a side effects are is it worth it? And to us the vyvanse is worth it but like I said it does affect his appetite and and that could be difficult because you know, Basil insolent is Like, the more you eat, the more you'll basil you're probably be probably need. That's what I've seen on him. So like when he doesn't, and I don't sometimes I don't give it to him on the weekends because I want him to eat. Although he's really, he's chubby now. So, you know, it kind of helps with weight control too. That's horrible to say, but it really does because he eats a lot and he and he does exercise but not as much and sometimes, you know, with the, your sugar being all over the place. You're like, okay, exercise. Okay, wait, don't and so

that consistent kind of thing. Yeah, it's

Scott Benner 50:36
it's interesting. It's it's listed as a stimulant that can treat ADHD and a binge eating disorder. Oh, wow. That's Yeah, okay. Well, yeah, I can see that. Well, so, my gosh, first of all, are you okay? Because Yeah, yeah. Oh, good. Because I would I, how are the other three kids? anything going on with them?

Nidia 50:57
Oh, God. It's so funny you asked because right now I'm very overwhelmed. My teenager is having issues with IBD. That like he's doctor hasn't diagnosed him with IBD. But it's kind of there. And, you know, he got a colonoscopy. He got an endoscopy and inflammations there. And he said, he doesn't want to call it a, you know, krones yet, because he doesn't kind of want to label him yet. Okay, so he's giving him some medication to see if it kind of goes away and see what happens. But yeah, that one, yes. And my seven year old, he's, he's got like asthma. Like, and I wouldn't call it like real true asthma. Because I know what true asthma is. This is more like he gets a cold. And he's like wheezing right now, because he just got a cold. He's got that then. And there's food allergies to peanut allergy with him. And then my teenagers got food allergies also. Just, it is a lot.

Scott Benner 52:00
So IBD, asthma type one, ADHD, food allergies, does your husband or you have any of these things? No, anybody in the family line that you're aware of? There's a lot of type two, like his mom, side of the family is heavy type two, she's got type two, she's in. What do you dialysis, end stage and stage renal. But no other like celiac or thyroid?

Nidia 52:33
thyroid? Yes. My mom. hypo, my dad. My dad's brothers have type two. And it's not it does, like it's not from obesity or anything they'd look, they just have their weight is fine. Yeah, it's like type two diabetic but they're, you know, how type two is always associated with weight and all that. But they're not they're, I mean, they're not super obese or I think there, you would look at him and you think they're fine.

Scott Benner 53:04
There's somebody who's weights not a good indicator of whether or not they have type two diabetes, it's just, it's not to think about it. But there's a lot of like, so look. ADHD, you know, is talked about as an inflammatory problem, which then leads that to be autoimmune food allergies can be autoimmune type one is autoimmune asthma, by the way is autoimmune. and so's irritable bowel. So you guys have like, a cornucopia of things. Okay. Yep. Hello, we dodged them. You and I, I mean, my husband, and I've touched them. I don't know. So I don't know anything about this. But it makes me wonder if it's sort of like one of those things like recessive and dominant genes and to have one get together and make another I don't know if that's possible. or not, maybe I might be talking out of my body. But that's fascinating that they have that there's so many kids with different stuff. And yet, you guys are just untouched by it. That's really fascinating.

Nidia 54:08
It is weird. But you know, let me tell you something. My grandmother on my mom's side, she lived to 106. So and with no medical issues, she's

Scott Benner 54:19
she sounds

Nidia 54:21
bite by the weight, but she was while they call it Indian, but Native American from Mexico. And so, you know, got a lot of I guess good blood or

Scott Benner 54:35
with people. That's, um, that's a real crazy line. It really is. That's a lot. Let me let me mention something else. My grandma. Yes. I'm sorry. No, I meant Go ahead, please.

Nidia 54:53
Oh, that my grandma had my so my mom told me the story. She had like a Kids, but she had other kids that died, you know, as kids. But the one that that ended that was back then it was like normal that they died before the age of three, let's say. But she had one that died at the age of eight. And I, you know, my mom's gone. So I can't ask her and she'd never knew about Sunday I was, you know, because it happened after she passed away. About that son of her brother that passed away at the age of eight. I always am like, always thinking about that, could it have been like, type one?

Unknown Speaker 55:33
Yeah, and they didn't know,

Scott Benner 55:35
could have been any number of these things. Honestly, without without medical intervention. You know, we talk about it here sometimes, you know, in our house. And I'll say it a ton on the podcast, but three of the four people in my immediate family would not be alive without modern medicine and intervention. On some love or not, my wife grew up with terrible ear infections that clearly 200 years ago would have killed her. I had my appendix, you know, went south on me, which before surgery would have killed me. And Arden has type one diabetes, which would have you know, by the way, I know this is crazy, but I was right by mistake. And now everyone's gonna probably think I'm an idiot. But Arden was diagnosed on August 22 2006, which was very month, a month after her her birthday, but I didn't remember that. When I was talking to you Just now I had to look on my own blog to the first time I ever wrote something on a blog, which was August 16 2007. And I started off by saying, you know, that I haven't been able to sleep for about a year. And then Arden's about to be a type one for one year on August 22. And then I'm starting a blog that crazy 2000 because what is it? That's 2021, isn't it? You won't do the math on that. Hold on. Three gets you to 1020 one's 11. Yeah, at 11. Free, you get 14? I've been doing this for 14 years. Yes. When the blog has she's 16. So yeah, she was too much. So you you knew better than I did. I had to figure it out. It's interesting. You can figure out my stuff, but not your own stuff. Yeah. I'm sitting over here trying to figure out everything is happening to my family as well. It's almost twinsies Yeah, well, I think we all are. And it seriously can be it's completely, I was gonna say can be overwhelming, but it is overwhelming. Because, you know, you look out the door and you think, well, that guy's okay. You know, I look at my neighbor, my neighbor seems fine. You know, probably doesn't have any problems in the world talking to him one day. He's had hypothyroidism for like, nine years. The guy is like, yeah, you know, my other neighbor. Like, literally, they were, you know, close, as close to these people as you can beat up neighbors. And if, if one of my other neighbors would never have told me, I never would have known she had breast cancer. Oh, wow. Right. And yeah, yeah, it's inside your home, it's easy to feel like, stuff is happening to us. It's just to us. But a lot of people have stuff like this. And I mean, there's that like, pie in the sky feeling like that, you know, they're, you know, you're a great great grandmother, whoever who lived like 300 years old, but it's just, that's not the norm. That's, you know, it just isn't the norm to live your whole life. 100 years and not get sick ever. No, not anymore, anyway. Yeah. Well, and especially well, especially when you're, you're saying just a couple of generations ago, people were losing their children, like, you know, like, they were losing their iPhone down a couch cushion, just, you know, like, Oh, where's that one where this one, go three, eight, you know, people died. So now you get to stay alive longer, and you find out what happens? You need some medical intervention, you know, and I think that seriously, seriously, though, you have to say, I'm alive. I get to live a life. It's, it's sometimes it's not the perfect one. But it the old there is no alternative to you know, the opposite of being alive is not existing. So there's there's no alternative except to take, you know, the cards you're dealt and do the best you can with them. Yeah, yeah. And I

Nidia 59:25
and I take that, like, that's how your podcast Believe it or not, has helped me see like, not see that but feel that and and push through it and not feel like sorry for myself or sorry for our family. But just and I tell my teenager that because you know, he's going through a lot. He also has like anxiety issues and stuff. And, and I tell him, because he's like, how could other people just enjoy and you know, we're, I'm stuck here and I go, we just got to work with what we have. And that's all And try to do the best that we can with what it is because I tell him you're very smart boy, you know you're intelligent, you will go other places that others won't who might be having fun right now. So you got to kind of, like you say, play the cards you're dealt, because we have other strengths that others might not. And so you you

push through and you,

you know, just don't even think about all the stuff you're going through. Well, you do think about it, but I'm saying, you know, it's okay.

Unknown Speaker 1:00:33
We'll get through this.

Scott Benner 1:00:35
You can't let it weigh on you. And you have to understand too, that the thing you dreamt about, that maybe isn't your dream, you don't mean just because when you're nine years old, you think to yourself, like, Oh, I know what I'm gonna do when I grow up, I'm gonna do this, and it doesn't work out that way. You know, it's funny, when it doesn't work out that way. Most people just pivot. But when it doesn't work out that way, because of a health issue, you feel like it was taken from, you know, like, I mean, yeah, how many kids play a sport, you know, as a as young kids, right? There's most of them. But you know, when you're 25, and you haven't played soccer, since you were 11, you don't think that somebody came along and stole your soccer dream away? You think, you know, it just wasn't for me. I wasn't, you know, it ended up I wasn't a college soccer player. I'm not a professional soccer player, whatever it ends up being. But when you have a dream of doing something, and then a medical thing gets in your way, you think, well, now this has been taken from me. Not not, like, not just that the natural progression of my life didn't lead me in this direction. And it's, you know, I understand, you know,

Nidia 1:01:38
that that really speaks to me, because I feel like I've felt that the diagnose like the type one diagnosis kind of took my career away. Like I was thinking, Okay, when we go back to the States, I will find a face to you know, like a real? No, not that virtual is not real, but like a face to face job as a teacher again, because I loved teaching high school. And I had that in mind. I'm like, yeah, I'm gonna do that. And, bam, type one. No, you're not. And that's how I felt.

Scott Benner 1:02:14
Well, no, it's not it's not inaccurate, because it is what happened. I mean, I don't, most of my life is not what I expected. And a majority of that is because of diabetes. Some of it's because of other people's health issues and, and the way they lead you into certainly, it's just, it is what it is, you know, my life did not turn out like a television show. That's for certain, right? Like, I'm not, you know, but kinda though like a movie while you're here. So anyway, I got this really successful podcast I think it's more like a heart. But But no, but you know what I mean? Like it's not just like everybody's not smiling. We don't have a little pot right into the evening and then sit around the fire and you know, then dad comes home and trips over the Ottoman It's not like that, you know, it's um, it's like a real life. It's,

Nidia 1:03:05
it is and it I agree that and also the type one the all these health issues and also they take a toll on on the marriage. You know, I find myself getting so angry at my husband over dumb things. Like what like this, like, okay, like this morning, I go, I grab my coffee. I grab my coffee creamer and I love I don't drink like the regular milk based. I like the the element. coffee creamer. So I buy my own and I buy him his french vanilla. You know, gross milk based one. And mine is almost empty. And I'm like, Why has he been using my coffee creamer? I bought him his it's right there. It's full. And

Unknown Speaker 1:03:52
things like that.

Scott Benner 1:03:53
Yeah, I want to tell you something right now. Okay. When you started telling that story, every married guy listening was like, oh, here comes interestingly, the women listening who are married, or like a DD is crazy. I would never do anything like what you all do? I just want you to know that we all do. Like everybody, every time you hear somebody else say something and you're like, Ah, that's weird. You do the same thing. You just probably do it around something different media. You're crazy. Let's let the guy eat the coffee creamer and just stop it. Don't worry, buy more I know just go buy more. But no, but not not listen, not crazy. Maybe crazy to believe that somehow this is going to change. You know, I mean, like that's, that's the interesting thing. Like, I mean, how many times do you need to see something before you say to yourself, I should lose this expectation? You're right, you're right. That's all. I don't know what to say. There. That's Um, I think that happens to both sexes. In a in a in a standard marriage between a man and a woman. I think that I could get your husband on here and he would tell 25 stories and weird things. Oh, yeah. Right. Yeah, and you can do the same thing. So I don't know.

Nidia 1:05:04
Yeah, we also like we we also fight. Well, these see that those little arguments then go blow up into bigger fights and and for example I don't even know what we were fighting about but but the fact that I take care of Santiago and he has kind of nothing to do with it came up. And I don't mind that

Unknown Speaker 1:05:26
come up when you brought it up by the way. I don't remember. I don't think I did, because I think he might think

Scott Benner 1:05:33
he started the conversation by saying, you know, I'm not really involved in this diabetes thing at all. No, that's because that sounds like something I shut up about if I was so

Nidia 1:05:43
think so I can you believe I don't even remember how it came up. But he's like, it. He it really ticked me off. He's like, you take care of him because I let you. If I took care of him, I'd probably be doing a better job than you. Oh.

He pushed my buttons. Yeah.

Scott Benner 1:06:03
Well, you know, you should do don't buy him anymore. Kramer and hide yours. That's what you could easily hide it. I didn't live without creamer for a couple of weeks and see what happens.

Nidia 1:06:15
We just jabbing at each other that day, you know, and then but he really knew how to get to me that day. And I was so angry. Yeah, no, I think I think I told him, I said, Oh, make sure Santiago Bolus is for this. And I said, Oh, but you don't know. Because we were using loop actually. And so he was very against it. And he's like, it's not FDA certified, blah, blah, blah. I said, That's okay. I think I know what I'm doing now, you know, after three years and a lot of podcast listening. And he's like, it's not FDA approved. I don't I don't want to do that. And so I tried it in November that loop. And then it was overwhelming back then. Cuz you know, you've said it. I heard those podcasts with the first one with Jenny, where you said, If I didn't have you, I'd quit in a week.

Scott Benner 1:07:08
Oh, yeah, I wouldn't. I wouldn't have done it for six days. I don't think without having somebody to like lean on.

Nidia 1:07:14
I quit in a week. Especially cuz I think I tried to show him something. And he's like, I'm not learning that it's not FDA approved, or something like that, you know, some flippant thing. And I oh my gosh, I was so angry. And I tried to do it. But he is, you know how you Bolus food and it kind of goes high and, and I tried to open and then his, his canula went off. And then his blood sugar was like 400. And I was like, Oh my god, it just went really bad. And then I didn't have support from him. So I was like, forget it. So I quit. But then I came back to it. In December,

Scott Benner 1:07:51
I think we've learned here in this hour is that if you're by yourself, it's lonely. And when you're other when you're with other people, you find yourself thinking, I wonder what it would be like to be alone.

Yeah, but I mean, I would never I would never want to kill him and put him in a small box. That's not what you were gonna say. Is it? No, no, of course. You know, listen, your we would I don't think I've ever I want to leave them. No, no, I'm not saying that about how long you've been married. 20 Okay. 298 Yeah, you're in the 25 year range. Almost 20 Yeah, this 2122 2323 years. Yeah, all you have to do is make a feel like the next five or six years and this will all just fade away again. Then you can just say you can just stare at each other until it's over. It'll be nice. Finally, there'll be nothing.

Unknown Speaker 1:08:54
I guess. You

Scott Benner 1:08:57
know, I think it's interesting when, when you've been together with somebody for so long. And it's so it's just, there's a decision you make in your head when when you start having like, my wife will say something and I'll have to think to myself like do I want to fight about that? And then most of the time I go No, I don't and then I just you know, I artfully move past it. I'm sure she does the same thing with me. But there's that once in a while where something gets said and you're like yeah, I'm gonna plant a flag on this hill and fight for a while.

Nidia 1:09:28
Yeah, yeah, you're right you're right. That does happen. I'm like okay, whatever. He's angry or Yeah, he's tired from work.

Scott Benner 1:09:36
Let it go. It never end it never ends well, I have never once thought let me fight this fight and then at the end thought well, that went well. I'm glad I did that. Never once it's never happened to me. I've always regretted it afterwards. therapists so Okay, I won't buy is your phone. Oh boy. Did you by any chance unlock your iPhone. It's making a weird that I'm getting a weird noise on your end.

Nidia 1:10:00
Let me see, let me see Oh, no, I didn't. Well, then I was on the chair that might have been might have been making some noise.

Scott Benner 1:10:07
No, no, this is very electronic noise, something's interfering with this all of a sudden. But anyway, it does. You know what, it's good. It's a, it's a good time to say, goodbye anyway. Because we've been at it for a while, I want to say this nidia I really appreciate you coming on most people who end up coming on telling their stories about things like ADHD and diabetes, or just recently I've been having a conversation with someone about like, Oh, I need you to have a talk to somebody about PCs. I want everyone to realize there's, there's no, there are no like people with magic answers out in the world. And, and you have people on to have these conversations, to find similarities and maybe be able to pick through them and you know, get a couple of ideas here or there, or at least just feel comfortable that somebody else is living the same existence. But there are not a lot of magic people with answers. Like, I think that's a construct of, you know, like major media, like, we're going to bring on this expert. Now he's going to tell you how to do this, and it just doesn't really exist, whether it's, you know, ADHD, or type one diabetes, or anything like that, you're just gonna hear ideas, and hopefully, some of them are gonna meld into your life. And once in a while, we get super lucky, right, and we find Jenny, but for the most part, you know, when there are issues that have so many varying approaches, I mean, look at this with ADHD, you know, for medications to find an answer for your son. You just got to hear the stories and figure out what's going on. But, you know, I'm guarantee you that this started with EDS saying like, I hope you can we have an episode with someone with ADHD, I need to hear from somebody with ADHD. And she turns out, she's the person you're hearing from, so I really appreciate you doing it. No problem. And one more thing I want to add here is your your voice is completely bonkers. If you if you really have something you want to say I'll just connect and read and we can reconnect and try it. Sure I do. Okay, so, alright, say hello. Hello. There we go.

Nidia 1:12:09
Alright, I just wanted to share something with you, please. Yeah. So I'm in a, I'm in your Facebook group. Am I making three for type one Facebook groups? And I'm in this one that call that's called T one D moms? I think. So, you know, they ask questions, you know, or you ask questions, and they answer and this young lady, she asked a question, she said something about, you know, my daughter's always in the two hundreds. I'm not comfortable. And I replied, oh, you probably just need more insulin. And she had said that her doctor said that for her daughter's weight that that was you know, what she was given was enough, was supposed to be enough. So I that's what I said wait, doesn't? It doesn't matter how much she weighs? everyone's needs are different. So she ends up messaging me, like privately. And we start you know, talking. And I I did a Skype on her. Talk to her. And I'm actually helping her. Yeah, we upped her Lantus. I mean, obviously, I tell her, you know, I would do this, if I were you. And you know, I've heard and I told her about your podcast, she listens now. Oh, hello. And her name is Matt aisyah. And she, she's like, Yeah, I don't mind you using me. And I just wanted to talk to you about you know, your podcast has not only helped myself, but now I feel like you do like it made me feel so good. I I'm you know, upping her lantis and helping her with all these boluses has really helped her daughter, I think she was at an 8.5 a one c last time she went three months ago. And with just like, almost two weeks of help. She just went in and her a once he was 7.5. And it was Yeah, it was only two weeks of me helping her and she said she used to be in the two three, you know, 200 hovering on the two hundreds and her nurse practitioners like don't give her insulin, you know, three hours, every three hours every three hours do the correction and don't feed her for more than 45 carbs and and I said that's baloney feeder whatever you want,

Scott Benner 1:14:22
as long as her child had diabetes 10 months, okay.

Nidia 1:14:28
Well, and but but the the nurse practitioner was not being helpful. Not even in this last appointment she had she says she said the nurse practitioner was like, Well, no, don't give her insulin. Unless she eats and don't correct all the after three hours, only 45 grams of carbs and she didn't even give her on the pod. I'm thinking in Spanish. I said that is a prescription. Okay. And so she goes to the class and I'm just kind of like, Oh my gosh, I'm so lucky not to have You know, to our endo, you know, just gives me what I want. And here's this nurse practitioner not letting her get what she wants. And I understand, you know, some, she wanted to give her the in pen just to track her her information, but I was like, don't pay for something that you're not going to use you want the Omnipod just get the Omni pod

Scott Benner 1:15:24
that interesting. Yeah, I mean, in the beginning of diagnosis, you, you get sometimes sketchy help. And then it takes a little time to figure out if that's going to be the quality of care all along, or if they were easing you into it. You know, I never know which you'll never know what it is in the beginning. But it's wonderful that you guys found each other.

Nidia 1:15:44
Yeah. And and so thank you, you not only helped you know, me, and you, let me tell you just one more thing you help people not only like with the management, but for me, it's emotionally. Excuse me, you you have helped a lot. You know what, and I can't tell you specifically how but all of the things that you say, just really helped me get comfortable and I've gotten comfortable where I'm at, I might even consider studying to be a diabetes educator, maybe?

Scott Benner 1:16:15
I'm afraid you're gonna find time for that. But that'd be amazing. If you did it. It might happen one day. Listen, that is very kind of you to share with me. I really appreciate it. I'm problem. I'm so happy that the podcast is been valuable for you. And then it allows you to be valuable in somebody else's life. That is really the goal is that for people to talk about this in a way that's not restrictive, to their, their good health outcomes. So okay, thank you, buddy. Know, you're I can't believe you're thanking me, but that's very kind You're welcome. means a lot. I don't know what it makes me feel. Yeah.

Nidia 1:16:50
Thank you. Well, just again, thanks again, for everything, all your experience, all your years of experience, and just kind of giving it out for free. No

Scott Benner 1:16:59
bites, Lisa. Hey, there's advertisers. I it's not it's not like I am, you know, I'm getting paid. It's just not by you. I feel very strangely about I don't know if this is not really a critique about others. But there's a real trend in social media right now to charge people for the things you know. And I just don't, I don't have that in me. I don't understand. I could never do that. Like I could never say like media, guess what, for just $69 a month, you can be in my facebook group and ask people like I love a zoom meeting. And it just I don't get all that like I'm not. Maybe it's just generationally misses me. But I have more of a capitalist mind. I think if I put out something that's quality, I could sell an add on it. And then you can get the information. I can be covered for my time and everybody wins is how it seems to me. So yeah, that's that's been the case. Yeah. Now I and being completely clear, prior to the last couple years of the podcast, I I've never taken an ad in my life. Like when I started that blog back in 2007. People offered me ads. And I was like, Nah, that's okay. Like, I don't like I didn't need it, to do the, to make the blog, like, you know, but the podcast has become an amount of time that that, you know, I had to give away other ways that we were supporting ourselves. So Oh, yeah. So it ends up being what it is. But I really appreciate that. It's really kind of you. I'm thrilled. Honestly, I don't sound thrilled because I don't modulate my voice around this because I usually, I usually just get embarrassed, but it's really cool. Really cool. I just wanted to share that. I thought that was Yeah, I thought that was pretty neat that she trusted me to guide her. And and they're doing great. Well, well, you know what happened? You get desperate enough. You're just like, all right. Say it again. What? No, it's Yeah,

Nidia 1:18:50
I think she was like she was she knew she could do better. And I told her she's a great mom for drawing. Yes. for searching and trusting somebody.

Scott Benner 1:19:01
I agree. So I want to wish you a ton of luck and everybody in your house. A lot of luck. And how long have you been in Virginia? Now?

Nidia 1:19:09
This is our third No, wait. We're going on our fourth year now. So yeah, we extended so it was supposed to be only three years. But with the diagnosis and everything. I'm like, I know I had enough. Let me just stay somewhere for like six years. A question

Scott Benner 1:19:24
before I let you go and a comment. So my question is, how did it end up buying a house sight unseen did that workout? It did? Okay. We love the house. Yeah. And a long time ago in our conversation, it's gonna be 45 minutes ago, you were trying to come up with the word impulsive. And you stopped and you stopped to find it. And after you found it, you said thank you out loud. Who were you thinking? myself? Oh. I just wanted to make sure it wasn't a voice in your head. That's all I

Nidia 1:19:58
know. You know, I'm filing So like I like I, sometimes I forget words. Yeah. And I search and I search and I'm like, Is it

Scott Benner 1:20:09
so I I imagined that's what you were doing I just didn't know who you thanked at the end I was like I didn't know if you had a friend named Patty that lives on your shoulder like thank you Patty. Crazy that's just my little wellness check for you seem like you're okay, so Nevermind. All right. Well, first of all, let's thank media for coming on the show and doing such a terrific job. I had a great time talking to her. I hope you enjoyed listening. I also want to thank touched by type one, and remind you to go to touch by type one.org or find them on Facebook, and Instagram. And then all those series that I told you about, remember the diabetes pro tip series, defining diabetes algorithm pumping diabetes variables afterdark how we eat there are so many to choose from, check them out at Juicebox Podcast comm while you're there, click on the links for the sponsors support the show

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