#1185 Type 1 Doesn't Discriminate

May 6, 2024Scott Benner

Rouselind and her son have Type 1 diabetes.

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Scott Benner 0:00
Hello friends, welcome to episode 1185 of the Juicebox Podcast.

On today's show I'll be speaking with Rosalyn, she has type one diabetes and a child who also has type one. Today we'll talk about Rosland story that begins all the way back with mph, and will also discuss how different ethnic backgrounds have different pathways to learning about diabetes. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you have type one diabetes, or are the caregiver of someone with type one, the T one D exchange is looking for you they just need you to complete a survey it takes about 10 minutes. You just have to be a US resident who has type one or is the caregiver of one and you can do this survey it helps move type one diabetes research forward, your answers will help T one D exchange.org/juicebox. To save 40% off of your entire order at cozy earth.com Please use the offer code juice box at checkout. And if you're going to drink ag one two with my link drink ag one.com/juice box don't forget to find the private Facebook group Juicebox Podcast type one diabetes us med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juice box or call 888721151 for use the link or the number get your free benefits check it get started today with us med this episode of The Juicebox Podcast is sponsored by the only implantable sensor rated for long term wear up to six months. The ever since CGM ever since cgm.com/juicebox.

Rosalind 2:09
My name is Rosalind. 42 years old, I was diagnosed with type one when I was 12. And I have two children. One my son is 13. And my daughter is nine. My son also has type one. He was diagnosed when he was seven. And he was recently diagnosed with celiac earlier this year

Scott Benner 2:29
as well. Okay. And your daughter's nine she doesn't have does not have any autoimmune issues. Thankfully, no. Okay. All right. This is on your side, the autoimmune or are their father's side too. Until

Rosalind 2:41
now, I was the only person with an autoimmune. I have two siblings, and neither one of them has type one. No one on either side of my family has type one. Until recently, when my son was diagnosed with celiac, I found out to my mom that we actually have I have a second cousin. I think yeah, his second cousin who actually also has celiac.

Scott Benner 3:04
Oh, okay. All right. Well, then that's I mean, not a big, not a big tree for sure. But at least that's a little more information for you. You were diagnosed when you were 12. That's 30 years ago.

Rosalind 3:15
It was 1993. Oh, wow.

Scott Benner 3:17
What was that? Do you remember that at all?

Rosalind 3:20
I actually do. I remember I started with symptoms towards the end of sixth grade. Obviously, we didn't we didn't have a history of it in the family. It was also the 90s. So you know, no one really there was no internet or anything like that. I remember being very thirsty. I remember the kids would get mad after PE when it was my turn to get up to the water fountain. I also remember kind of like the teacher like being upset every time I had to go to the restroom. And then I remember also looking back at my pictures. I was so so so skinny for my graduation pictures. Yeah, I didn't get diagnosed officially until the end of the summer. So I basically went on with the symptoms for like three months. That's

Scott Benner 4:02
what I was gonna ask you. Do you think it went on for about three months? Yes. lost weight, bothering kids at the water fountain. But do you think the water fountain is even a thing kids understand now? They have bottle filling stations. Now. Did you know that right?

Rosalind 4:17
So no, I don't think so. You remember you would just

Scott Benner 4:21
put your mouth right on it. You didn't care?

Rosalind 4:24
Exactly. Especially when I was going through that. I mean, I would just stand there. And I remember the teacher will counsel 10 per kid. So what I will do is stay a little bit extra and then go back to the end of the line. And hopefully you get another turn. So I remember that so clearly. Yeah.

Scott Benner 4:41
Is that a thing? You ever? Do you recall it being worrisome to you or no? No,

Rosalind 4:47
I actually don't because I don't even think my mom realized that until my stepfather was the one who noticed and said she's losing a lot of weight something doesn't seem right like she I don't know. I don't think she noticed that either. Wow.

Scott Benner 5:02
Yeah. I mean, it's one of those things right. Like, I don't know how you didn't go. Did you go into DKA? Or do you remember being taken to the hospital or doctor's office?

Rosalind 5:10
Yeah, no, I did not. I don't think I wanted to DKA. But I do remember I was in summer camp. And I remember my mom picking me up. And I remember I was just laying down on literally on the concrete as other kids were playing. And so geez, she just picked me up and took me to the Children's Hospital. Because what happened was when my stepfather mentioned to her, she she looks really, really thin. Something isn't right. She just took me to the regular pediatrician and they did blood work. So they called her a few days later and let her know, hey, her sugar is high. You got to take her to the ER right now.

Scott Benner 5:43
And when she goes to find you just lying on the ground,

Rosalind 5:46
I remember that. Yes, I was laying I had like zero energy. And this was in Florida in the middle of the summer. So it was like super hot. And I do remember that I was laying down

Scott Benner 5:57
like a fried egg on the ground. Well imagine that. Yeah, but seriously, imagine being so depleted, that you? That seems like a reasonable thing to deal with laying on the hot ground, you know, right.

Rosalind 6:10
And I remember always like when she would serve me dinner, I would eat all of it. But then I would always and it was so funny, because then later on, she was like I was killing you. Because I would always ask for more soda. And my mom was one of those moms that was okay. She will just give us more soda. And I remember drinking like glasses after glasses of orange soda. You

Scott Benner 6:29
know, everyone's mom. And so I'm saying that they're like, Oh, I can't believe like, my favorite part is when people are like, you know, we were on our way to the hospital. And my kid asked for some food or something or said they were hungry. And I thought well, maybe this is their last time so I got them some big crazy meal or something like that. And right. Your mom was just happy to probably that you were eating. Honestly, you don't I mean,

Rosalind 6:50
probably Yeah. Because I was so skinny. She was we were all I have two sisters that we were all very small growing up. So she was probably like, okay, she's finally eating. And then she probably she also thought it was like, oh, puberty and you know, she's changing and all this other stuff. So she never put the two

Scott Benner 7:05
together? Of course not. And what gets you there? Finally, is your stepfather saying, hey, something's wrong. She takes you to the doctor. They do the blood work, and then this whole thing starts for you. Correct? Yeah. Okay, so management 30 years ago looks like what? How many times have you thought it's time to change my CGM? I just changed it. And then you look and realize, Oh, my God, it's been 14 days already a week, week and a half. Feels like I just did this. Well, you'll never feel like that with the Eversense CGM. Because ever since is the only long term CGM was six months of real time glucose readings giving you more convenience, confidence and flexibility. So if you're one of those people who has that thought that I just did this then I why we're gonna have to do this again right now. If you don't like that feeling, give ever sent to try because we've ever since you'll replace the sensor just once every six months via a simple in office visit ever since cgm.com/juicebox. To learn more and get started today, would you like take a break take a shower you can with ever since without wasting a sensor. don't want anybody to know for your big day. Take it off. No one has to know whether your sensor has been failing before 10 or 14 days. That won't happen with ever since. Have you ever had a sensor get torn off while you're pulling off your shirt. That won't happen with ever since. So no sensor to get knocked off. It's as discreet as you want it to be. It's incredibly accurate. And you only have to change it once every six months. Ever since cgm.com/juice box.

Rosalind 8:45
It was NPH and regular. I had the I still remember the one touch meter the squared one that took 45 seconds to give you a result

Scott Benner 8:56
was that the one that looked like a like the size of a brick. It wasn't

Rosalind 8:59
as big as a brick. But it was I think it was called One Touch basic. And then eventually they came up with one touch to

Scott Benner 9:06
me to try to find a picture of it while we're talking. It

Rosalind 9:09
was like gray it was like light gray and then I still remember the the middle was like a darker green. And then it was 45 seconds to get your results which was like oh my gosh, longest 45 seconds where you

Scott Benner 9:22
just like standing there waiting to see if I am looking at it. Oh my god. You can find one on eBay still. One Touch basic by lifescan.

Rosalind 9:31
Yes, yes. It will say that I remember that. Uh huh. Oh,

Scott Benner 9:35
that's fantastic. Look at that thing. But look, you know what it looks like a Um, wow, this is something no one's I don't even know if I should bother saying this. But I used to have a handheld football game. But the football players were just dashes on the screen. And the football player that had the ball was a bold dash and the other ones weren't and then you had these little I know no one remembers this at all. You're too young for that. You're like, Yo, Scott, come on. I had Colico vision at least, it just looks exactly like that. It's crazy. It's just a gray box. You you described it perfectly by the way. It's

Rosalind 10:11
in my brain. Like I can literally see it right now. And I don't have it in front of me. Yeah, that's

Scott Benner 10:15
amazing. So let me kind of work backwards a little bit. How is your overall health right now? Do you have any, any issues?

Rosalind 10:23
I luckily do not have any complications whatsoever that I know of. And I mean, I get tested. I go to the doctor regularly. So I don't have any complications.

Scott Benner 10:35
Amazing. When do you know how long used regular an MPH for?

Rosalind 10:38
I use regular and NPH? Actually a little bit like a little too long. I think I started our Lantis and human log, like in 2005 or six, or maybe even seven to be honest with

Scott Benner 10:54
you. Oh, uh, you were over 10 years doing it that way? Oh, yeah. That's something and then when you move to the more modern insulins, back then you're not pumping still. You're doing MDI.

Rosalind 11:08
I actually you mean now currently back then

Scott Benner 11:10
when you got off regular and mph? Did you go to a pump? Oh, no, I

Rosalind 11:14
was on pens. Yeah. Okay.

Scott Benner 11:16
How long did that go for before you made it to a pump?

Rosalind 11:19
I actually made it to a pump because of my son. And I actually started on a pump

Scott Benner 11:24
last year. Ah, this is what I was wondering if you were gonna say so your your the way you manage was the way you manage it was working fine for you. And you you had no need to change it. What were your A onesies like over the last decade? For example?

Rosalind 11:37
I honestly don't think I ever went past like an eight. Okay. I never did I remember when I first got pregnant with my son. And I went in they of course, it wasn't perfect. I think it was like a 7.6. And then I worked really hard at it. And I went down to I think the lowest I got throughout his pregnancy was probably like a 6.2.

Scott Benner 11:58
Good for you look at that. And then after the pregnancy is over, do you kind of just go back to the way you did it before? Yeah, yeah. Okay. All right. So with your MDI, and I have to be honest, like holding than a one C like that, coming from the time you came from is very respectable, and and like good work. You know what I mean? Because you I mean, how much information did you have about diabetes? Honestly, honestly,

Rosalind 12:20
not a lot. But I think I figured some things out. Like I figured what made me feel good and what didn't. I also remember, as a child, it was, we would go to the clinic for for type one. And it was like the day that although type ones would be seen by an endocrinologist. And I remember a parents who also had type one talking to my mom. So I was born and raised in Miami. So it's a big Hispanic community, as my culture is also Hispanic. So we eat a lot of rice, right, and beans and stuff like that. And I remember this woman talking to my mom and saying, let her eat as much as she wants just not as much rice. Okay. And so, yeah, that always stuck to me and to my mom. So I would always have more protein and veggies. Also, we had a nutritionist when I was hospitalized. And again, it was a big Hispanic community. So even the nutritionist was Hispanic. And she even said that you want any more, eat more, be more protein, eat more veggies. Not as much rice don't have a lot of racks. It's

Scott Benner 13:22
crazy how things happen while I'm recording. Two days ago, I put up an episode. It's a type two story with this girl who's Mexican. And the next day, I you know, we talked about kind of culturally how that impacted with food when she was growing up. The next day I recorded with a woman who has type one, if I'm being honest, Roslyn, she was a very white lady. And she had a very Spanish last name. And I was like, What's going on here? Like when she spoke, you could tell she spoke Spanish. And I was like, what's happening? So I just asked her, her husband's Mexican. Oh, he had just gotten type two. And she that led into more conversation about the culture and the food. And then when you just said today, like, you know, this is my heritage, and it's like, what am I on? Lika? You don't I mean, like, is this like, tell them under this week? What's going on here? It's like, fifth, I

Rosalind 14:08
would say that because I've been listening to your podcast since my son was diagnosed in 2018. And I'm like, Hey, we I need to hear more Hispanic stories or other cultures. I need to hear more, because I'm like, I know. I'm not the only one.

Scott Benner 14:20
Apparently, I'm on it this week. So it's fantastic. You said that I was like, this might be like, I gotta look to see if like, I made a did I put out an email for like, cultural like stuff? And I'm like, I don't think I did. But anyway, so you know, it's funny, I think, because when people come on from different cultural backgrounds, they have no trouble saying look, it's our culture. We eat a lot of this or there's a lot of pasta or a lot of rice or you know, like, but but nobody ever says look, I'm a I have a standard American diet culturally. We eat a lot of processed food and a lot of like, it's it's interesting, isn't it? Yeah.

Rosalind 14:56
And I actually did hear that episode. You're mentioning with the Young Lady earlier this week, and I remember when she was talking about that. And that's exactly what I thought. I'm like, wait a minute. Every culture has food is actually there's healthier versions and and then the regular good stuff. You know what I mean? We can

Scott Benner 15:13
all eat chicken and broccoli, but it doesn't matter what your culture.

Rosalind 15:18
Right? It just depends on how you make it. Yeah. Is it? Yeah, is it portion control in my opinion. And so I learned that early on, and I tried my best to stick to it. And that's what I did.

Scott Benner 15:32
I used to hate ordering my daughter's diabetes supplies, and never had a good experience. And it was frustrating. But it hasn't been that way for a while, actually for about three years now. Because that's how long we've been using us med us med.com/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. And they always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom G seven. They accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better business bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do. I think what people are really saying is they're going look over generations, the people in my family have decided that on these days of the year or this day of the week or whatever, it doesn't matter what we because it's the thing we do. And so you know, it's Christmas. So you can eat cookies for breakfast or like, you know, it's this so that and you know, I don't know, I'm interested by it. It's a it's an interesting way people talk about their food. So I don't know, I'm always I always like these conversations. No. You're MDI this whole time. And then, by the way, not an uncommon story. Your kids diagnosed and what does that do? It makes you reevaluate yourself.

Rosalind 17:35
Um, yes, absolutely.

Scott Benner 17:37
What is it, you see, that makes you think, Oh, maybe I should be doing something different.

Rosalind 17:42
So first of all, he was diagnosed in 2018. And it's very interesting, because I'm not the one who caught it. It was my husband.

Scott Benner 17:50
Yeah, that is kind of funny. Yeah. I'm always like, How did I miss

Rosalind 17:53
that? So he wasn't even showing like symptoms. He there was no weight loss. There was no frequent urination or anything like that. The way we found out was, it was a Cinco Demayo weekend. And my son has always been a big eater. And so he wanted tacos. I was like, okay, cool, make them tacos. But he kept asking for more and more food. And I mean, he was seven at the time. And I think he had like, four toggles and my husband's like, something's wrong. Like, why is he sweating like that? And I'm like, What do you mean, he's running around and he's eating? And my husband for some reason to this day, I will never know what made him ask that he goes, get your meter and check his sugar. I was like, Okay, I was like, You're crazy. But okay, I'll check a sugar. Check a sugar here. Sugar was 220 something. And I was like, This is not right. So we did a second test. And it was 220 something again, then I checked myself, check my husband cuz I'm like, the meters broken. This can't be right. Yeah. And so when we see that it's actually reading, right? I mean, the rest is history. We I we got them. We took them to the ER. And by the next morning, it was you know, they diagnosed him it was type one

Scott Benner 19:07
that break your heart or where does that land you? Like psychological?

Rosalind 19:11
Oh, my gosh, no, I was devastated. Why?

Scott Benner 19:14
Tell me what what about your life made you feel that way?

Rosalind 19:17
I felt really guilty. For some reason. I even got emotional now.

Scott Benner 19:23
Okay, I'm sorry.

Rosalind 19:26
It's okay. He was so young. And that was always my biggest fear. And I felt bad because when I planned when we plan to have children, I mean, honestly, he wasn't planned. But before that, I had always asked doctors, what's the likelihood that my kids will get this? And they're like, oh, no, they're likely to it's the same as anybody else. That's what they were telling me. I even had the handle told me that due to my age, because I had them when I was 29. They were like the likelihood is even less that your children will have type one Okay, it's like, okay, cool. Even as a baby, I asked this pediatrician, they're like, it's, you know, he has the same risk as any other child. So then fast forward to this day, and I'm like, Oh, my gosh, I can't believe that's happening. So my fears. I mean, I guess it's just be living with that. And he was so young, and you know, just thinking complications and things like that, even though I didn't have any. But, you know, it has always been in the back of my mind that that's something that can happen. So

Scott Benner 20:30
were you seated with those fears? When you were growing up? Did people talk to you like, about it that way? Oh, absolutely. Oh, yeah. So eat like this, or this is gonna happen, like, take your insulin, or this is gonna happen, those sort of things were said.

Rosalind 20:45
Yes, not by my mom. My mom never did that. But the end goals were not exactly. I still remember one Endo, I went in, I don't remember my agency. So I don't remember what caused him to say this to me. But we go in, and he just puts his hands over my eyes. And he tells me if you continue this, this is what's going to happen, you're not going to be able to see, I was like, you know, that terrified me. And I was like, Oh, my gosh.

Scott Benner 21:09
So did it work? So I've heard it described by people as someone tried to scare me into taking care of myself. And it backfired, or they tried to scare me, and it worked. Did you like Were you scared straight? Or did you just ignore it? I

Rosalind 21:23
didn't ignore it. And it also I also wasn't scared straight, I still just went on doing what I was doing. And in the back of my mind, I just basically started thinking, I might as well enjoy everything as much as I can. Because you never know when this thought or the other might happen. So it was always in the back of my mind. But it didn't. I mean, I still went out and ate my sugar still ran high. Sometimes, you know, I still partied and things like that. But I wouldn't say a scare me straight. But it also did kind of, I guess, in a way. Now, I don't want to say help. But I guess it just always made me aware of the fact that, you know, I might have issues later on. So I might as well enjoy things as much as I can. If that makes sense. Like

Scott Benner 22:06
it does make sense. I've and I've heard other people say it, that, to me seems like the danger of it. Like if you if you tell somebody, Hey, if you keep going like this bad things are gonna happen. But then they don't tell you how to stop going like this, whatever that means. You have no tools, you just now you just have the consequence in front of you. And right,

Rosalind 22:24
because there's not like they gave you they told me what to do after that. It's not like, yeah, exactly.

Scott Benner 22:30
It's my biggest pet peeve with doctors is they like to tell you like, the x is going to happen if you don't fix it, but they don't tell you what fix it is. And you know, where they I don't know, if they assume you know, I can't tell Rozlyn? I can't tell if they assume you know, or if they don't know how to explain to you how to achieve it. I can never figure out exactly, maybe it's sometimes, you know, sometimes it's just bad communication. Maybe sometimes it's a doctor who doesn't understand what to tell you. Like, I don't know the difference, but it's upsetting because then you have this conversation with somebody 30 years later, and you're like, hey, you know, I didn't know what to do. And, you know, you would you have worked at it if you knew.

Rosalind 23:12
I think so. But I think also what I think a lot of it also has to do with the fact that if they don't have a lifelong condition, they don't understand how difficult it could be to manage that along with life. If that if, if that makes sense. And I think they think that those quick courses that they gave you of counting carbs, or the exchange diet, which is what they did back then, like they think that in one week that they teach you all that that's just what you're gonna go by forever. Yeah, they don't know. Yeah, I think it's a lot. And then also the fact that what they see you for, like 15 minutes. Yeah. So I

Scott Benner 23:47
definitely think the mix of the problem is a little bit that most medications are like, Hey, take this in the morning on an empty stomach, or, you know, like that kind of stuff. And I do think they feed out that diabetes information in the same way. You just count this, you do this, you push the button here, it's all going to be fine. You know, don't worry about

Rosalind 24:06
Yeah, because when I went on shots, when the pens, I remember they gave me a class on how to carb calm. Until then I didn't know how to carb count, because I was still on mph and regular. Yeah. So now fast forward to the Lantis and human. I had a class for like an hour, I think. And I remember I think it was a nurse. And so she taught me how to carb count. And so what she told me was one unit per 15 carbs. And I remember going home that day and thinking I counted correctly. And I gave myself way too much insulin and I started dropping. I remember like sweating and I'm like, Oh my gosh, what is going on? And then after that I was like, I need to figure this out on my own because they really what they were telling me wasn't working. So I kind of just tried to figure it out on my own. Just like I had a scare with Atlantis, where I was told to take it in the mornings. No, I'm sorry in the evenings they told me to take it in the evenings. And then I would wake up and I will be really low during the night. So what I did was I started taking it in the mornings, and I helped a little bit.

Scott Benner 25:08
And that's you around 22 years old, right? Like in your early 20s? Yes. When you started shooting, right, right. So this is interesting, because you had an experience, and then said to yourself, that's not right. I'm going to have to experiment. But some people have that experience over and over again, and they do not have the nerve to break free of what the doctor told them. Like, why were you so comfortable saying, I'm not gonna do this overnight? I'll do it during the day. I really

Rosalind 25:34
can't tell you. I just knew I was scared to go to sleep at night and not wake up. So I was like, okay, maybe I can try this in the morning. At the end of the day, it didn't make sense to me. I'm like, What is the point? I was always used to doing my NPH and regular in the morning, not before bedtime. So I guess I just apply that idea to the Lantis.

Scott Benner 25:53
You just apply common sense. Like if I'm gonna get low, I'd like to be awake while it's happening. Correct? Yeah, that's simple, isn't it? Wow. Isn't that interesting? And so just your personality? Do you kind of not take crap from people generally speaking?

Rosalind 26:05
I think so. Yeah.

Scott Benner 26:08
You're like, Yeah, sure. I don't want to sound harsh, but I don't take people. Right. No, it just because you see what I'm saying? Like there are plenty of people who will struggle for their life, doing a thing that they absolutely as they're doing it think this is not the right thing to do. Right. And yet they will. It's what the doctor told them and they and they won't break free from it. So go so good for you. Congratulations. But still, even having done that in your early 20s. You're still getting seven and a half, eight a one sees you know, get it down to the six is for a pregnancy. Babies born back kind of how you're doing it. You have another little I mean, it looks like if he was seven, she's nine. She was three. She was Yeah, then she was a baby when he was four,

Rosalind 26:55
three and a half or four. Okay. And another thing to what you said before that another thing I had pushback from the doctors was, I would always test my blood sugar. I they've recommended before meals. And I remember this so vividly. No matter who the handle was they were always asking me, why are you testing so much? Because I was testing sometimes up to 910 times a day. And they couldn't wrap their head around why I was doing it that often. And I remember having to tell them, I'm exercising. So I need to know where my blood sugar is before I start exercising, or I need to know if I'm lower now before I get in a car before I started driving. And so that was another pushback I got they would always ask me. Why are you testing so often, you're only supposed to test before meals.

Scott Benner 27:43
Two things that happened to me when Arden was younger that stuck in my head. And I still like I can picture the scenario I was in when it was said to me. So the first one is similar to you. I said, Hey, listen, she's eating and like an hour and a half after she eats her blood sugar spiking up? And do you know what they said to me? Stop testing, then. Wow. And I'm like, Yeah, I was like, Stop, hold on a second. So for blood sugar is getting really high. And I want to know what it's doing. So I can figure out how to stop it. And they're like, does it come back down? And I'm like, yeah, they go then don't worry about it. I'm like, but no, but like, it could go to 300 or more. Right? I was told the same thing. Yeah, just don't test them. And I was like, so we're gonna go with head in the sand on this one. I was like, that's, that's your vibe. And the other thing around insulin that was said to me. And testing specifically that I just like, shocked me immediately, is I said, Well, how often do I have to test her overnight? And they said, You don't have to test overnight. And I was like, Well, if I don't have to test overnight, why do I have to test during the day? And just the blank stare? Like I said, What's the difference between being asleep and being awake? I'm like, I don't understand, right? You need to get sleep. And I was like, that doesn't address the problem of her blood sugar. It's fascinating. Like, there's no common sense in either of those states. Right? And that's what people were told for freaking ever. Just forever. Yeah, they

Rosalind 29:13
just tell you, I think they just tell you, whatever it takes. So just make a quick thing. Just get out I need to see. To be honest with you.

Scott Benner 29:20
I like how honest you are about that. You're like I just think they want you out of there.

Rosalind 29:26
I mean, it makes me that's what I've noticed, you know they have a waiting room full of people you're just another number they're just trying to get get you out of there. I honestly think that after everything I've learned what myself and especially after my son, when you're diagnosed with something it's kind of your own responsibility, I guess to do your own research because honestly, you're you're you're on your own. Unfortunately the person

Scott Benner 29:49
who made those two statements to me, I think is a very well intended lovely person and who actually cared about Arden right, but to say the Give me those two answers. Just don't look after she eats and you don't have to look at night. That's a complete misunderstanding of, of of insulin, right? Unless you understand how it works. You're deciding to concede for me that we can't be successful and healthy. So why bother looking? Like if that's what they that was one of the other, she that didn't know what she was talking about? Or didn't think it was possible to fix, even though she understood the mechanics of it. I don't know. I just very upsetting to me, trust me, right. That was maybe 13 years ago. I can make myself upset right now about that, if I think about it,

Rosalind 30:36
yeah, it's because how many people don't receive the same advice and literally just follow that. And then, you know, that creates all the issues and complications probably were so many, I was told the same thing with my son when he first started going to the doctor's visits. So they would say it's been two hours since he ate. So that's pretty normal, that his sugars are gonna be elevated, you'll eventually come down. They used to tell me the same thing. It's

Scott Benner 31:00
something else, I don't know it's up. It's like I said, I get upset when I think about it. So alright, so anyway, so he's diagnosed. And what happens the their endo tries to put them on a CGM, or by the way, are using a CGM during any of this time.

Rosalind 31:14
Oh, that's another story. So after I have my daughter, she was born 2013. I guess the Dexcom four had just come out. And so the endo gives me or puts me on the Dexcom. It worked great. But unfortunately, I had to stop using it because I would have horrible skin rashes. And I remember calling Dexcom and saying, Is there a way I can fix this? What can I do? I really need it. I really want it. But I can't handle these rashes. I mean, my skin would be wrong. Unfortunately, they didn't have an answer for me. I didn't know about diabetes groups on Facebook or anything like that. So I just stopped using the Dexcom. Wow.

Scott Benner 31:54
Yeah, yeah. And yeah, and now we know, well, first of all those original devices, that adhesive was like duct tape, get really, really held on and they've learned over time, I mean, all of them. But Dexcom. Specifically, they learned over time, like we have to find a balance between how much the sticks, and how much it irritates people's skin. And they do a good job with it, like over the generations of figuring out but yeah, you got so you got into early basically, and then had a problem and never got back to it. When when's the next time you thought about a CGM again after that. I

Rosalind 32:29
thought about a CGM after that when my son was diagnosed, so when in 2018, when he was diagnosed, I remember in the hospital, I asked, Are there any support groups that you guys have anything because I need support, I need to know what's going on. I need to know what to do. And so basically, they're like, No, I'm sorry, I don't have anything. So then I started looking at Facebook, and I joined some groups there. And I started seeing everyone talking about Dexcom, and then also the libre. So when I asked his Endo, they said that he he got diagnosed, right when the Dexcom G six was about to come out. Okay. So what she told me was he got diagnosed in May. And if I remember correctly, the G six was released, like in July. So she said that in two months, we can go ahead and put them on the G six, there's no point on putting him on to five. I said, Okay, well, if if he can't have that, for whatever reason, you're saying, what about the libre? And then I remember I got him on the libre. Because she I don't remember what was her reason for making me wait, or not giving me the libre, but she eventually gave me the libre, the prescription for the libre? Because I told her Oh, they wanted me to check him at 12 midnight every night. And I'm like, Okay, we, me and my husband both work. And if there's something available, where it could be a little bit easier, or give me peace of mind when he goes to school? Why can I just have this in the meantime? Yeah. So they finally let me have the libre. And I remember having to wake up and swipe them in the middle of the night and all that good stuff. And then eventually, as soon as the Dexcom came out, we went ahead and he got on the on the G steaks. And then he started complaining of the itching as well. And that's when the parent group started helping because I realized, Oh, I could just spray some flow nice on him and he'll be fine and that

Scott Benner 34:19
crazy. Of all the weird that

Rosalind 34:23
I felt so frustrated. I was like, what was the three four years ago? I could have been fine. Yeah. So I then of course, then I got on it as well. So then we were both on the Dexcom yeah,

Scott Benner 34:33
sometimes I see stuff like that. I'm like wait to go internet. That's amazing. Like who's the first person who was like, I'll spray flow nasal on it, let it dry, then put it on. President I have it's such an inappropriate story I've told on the podcast before and I'm not going to embarrass you with it here. But I use Flow neighs once for something that it's not meant for and it really saved me two already. I'll tell you afterwards. It's such a dumb story anyway, maybe at the end not right now. So okay, so he's a G six. And then does he get a pump pretty immediately,

Rosalind 35:08
he got a pump. So my son is very interesting. He's a very, I don't know, he's just very, he's wise beyond his years. He's very like with it. I remember coming home with him. And my hands used to literally shake whenever I had to give him a shot. So two weeks into diagnosis. He's like, I can do it. I'm gonna do it. And we were like, Okay, you are? And he said, Yes, I got it. I was like, Cool. And he and he did it. So then fast forward to another year. I think he was eight. I send them to a weekend diabetes camp that they had in Florida. So he goes, and I guess he sees other kids with an army pod. And he comes back and says, Mom, I really want that. The kids have like a remote and they can just trust. I mean, they could just give themselves incidents. I don't have to do shots. Yeah. So I was like, Okay, we'll talk to the doctor. And I had asked from before also, because once I started listening to your podcast, which is I found that in one of those parent groups, someone said Juicebox Podcast, so I started listening to you in 2018. He must have been like two weeks in diagnosis. And so I remember when I initially asked where he was still honeymooning, he honeymooned for a long time, because we caught it so early. And so they said he wasn't on enough insulin to be able to use the Omnipod at first. Okay. Right. So it wasn't until 2020 that he was finally able to get on the Omnipod. I

Scott Benner 36:30
see. I see. i By the way, I love that your seven year old, at that point, watched you shaking with that needle and thought this lady is not my best bet. I bet.

Rosalind 36:41
He's like that, even with the celiac diagnosis. He's like, I'm fine. I got it. Don't worry about it. And I'm like, Are you really no good. Sometimes I just I kept putting things like that.

Scott Benner 36:51
But how many times do you inject yourself every day? At that point? I mean, when when he's diagnosed, when he's diagnosed, you're injecting still, how come? You couldn't do it to him?

Rosalind 37:00
I think I was just a mess. Yeah, I was just a mess. It was I took it really, really hard. I was really, really sad. And it just I don't know, I was just a mess. heartbreaking,

Scott Benner 37:10
right? To do. I'm sorry. It's heartbreaking to do it. Like, especially

Rosalind 37:15
it is I just couldn't believe that he would have to go through what I you know, have been going through all these years. And I think what especially broke my heart was that at least I got diagnosed at 12. He was seven. And so it was really difficult for me. But I think he's a really strong kid. And I think it also helped I think, at least that's what my husband says the fact that he sees me doing it, he would always see me injecting myself in the morning before heading out the door to go to work in school. So I guess he's just like, Okay, this is just what we do. She looks fine. So I'll be fine.

Scott Benner 37:48
So the family thing, I guess. Yeah, well, like red hair, I guess is what we have. That's pretty. That's pretty great. He sounds terrific. Absolutely. Let me make sure I understand this. Now that it's not you, it's him. You're like, we need to do a good job. And I don't have enough information, even though I've been at this for nearly 30 years at that point. And so I'm going to go out into the world. I'm going to find some support, see what other people are saying. I mean, I'm assuming it's a life jacket thing like you. But it's not right. Like you get him first you don't you don't figure it out for yourself and then go to him, you figure him out and then relay it back to your own care.

Rosalind 38:27
I think it kind of happened at the same time. Okay. I remember when he was in the hospital, it was a weekend. And so they wanted, they said they figure they're like, Well, you have it. So it should be fine. But we still want you to make sure your husband understands carb counting as well. Well, little did they know I honestly had never really carb counting. So we're sitting there learning how to carb count and my husband's actually doing better than me.

Scott Benner 38:52
Well, he also knows what diabetes looks like, because he saw it on your kid in two seconds. That's like you said earlier? Like, I don't know why he saw it so quickly. But what I thought was was he's been watching you, probably

Rosalind 39:03
because I remember I mean, I feel so bad for him afterwards. Because at night when I would have Lowe's be free. You know, I didn't have a Dexcom. So he would be the one waking me up. You know, sometimes. And I guess that he mentioned he told me, you know, this is what I had to do all the time with you because you would sweat and when I would see you sweating or you wouldn't move I knew something was wrong.

Scott Benner 39:24
Yeah, that's so so it's funny. He thought of the sweating is a low blood sugar. Right? Right. So he saw your son sweating and thought diabetes, but he was probably sweating because his body was just working so hard at, you know, trying to stay nice to try to stay alive at that point when his blood sugar was high in that crazy. Well, yeah, good for him. And good for all of you, honestly. And it's lovely to hear how well your husband takes care of you too, and looks out for you. Oh,

Rosalind 39:51
thank you. Yeah, I've heard some episodes where people talk about their spouses and how some of them are not that like vested into it and whatnot. And it's interesting because I remember when I started on the Dexcom, after my son, he wanted to follow me. And I told him absolutely not. It was so bad. Of course, I eventually let him follow me. But until then it had been my thing. You see what I'm saying? So I was, I took care of it, I got it, don't worry about it. And he's like, Well, I need to know what about when I'm at work, and you're at home with the kids? How can I not know what your sugar is? Why don't you want me to know? And so yeah, it was it was very interesting how that also switched. Because until that moment, I think he didn't obviously, he didn't know what diabetes all entailed. And also, I felt like it was something that was just mind for me to take care of. And I didn't need anyone to help me. You

Scott Benner 40:45
also, by the way, coming up through regular an MPH, you didn't know all it entailed in a modern world. Until exactly so you started worrying for your son and paying attention to what other people were doing. And then it brings you along. So if they asked you like, what's your one see now? Right now I'm at six point to look at you say and that's not you freaking out because you're pregnant. That's just how you live. Exactly. Good for you. That's wonderful. And your son similar? Yes,

Rosalind 41:11
he's also like, 6.2, the highest he's ever been, I think was 6.70. And that's middle school. That was a hole. Yeah.

Scott Benner 41:21
Hey, do you eat rice again? Or do you not like it anymore?

Rosalind 41:24
Oh, no, we rice sweet. Everything's

Scott Benner 41:26
your back. You're like, Hey, I figured out insulin. gave me that rice.

Rosalind 41:33
We figured I figured it all out. Thankfully, listening to your podcast, I was a big help to be honest with you, especially in Dublin game. Oh, yeah. I remember listening to your first few episodes. I mean, I've listened to all of them for the most part. And I was like, Oh my gosh, he doesn't like how I do it. Because they were really strict about wanting me to count carbs. And I'm like, I don't do that. I can just look at something and at least for myself, and kind of know how much I need. And so that's kind of how I started doing it for him. And it wasn't that it wasn't working. But they wanted me to do it their way by counting. And I was like, oh, that's kind of like not how I do it. And so I just learned how to, after listening to I think I forgot which episode it was. But I was like, Well, you know, if his daughter's doing great, and this is how he does it. I'm pretty sure I can continue to do it the way I've always done it and my son is going to be fine. Yeah,

Scott Benner 42:23
I think what works is what's best. And you know, that's what works for you. You but you can't lie to yourself. You can't say oh, no, it's fine. Like I have some people say, Oh, my a one sees a man. Great. And I know a one see, like, I know we're looking at time and range, too. I'm just using this as an example. But I hear people say like, Oh, my one sees are great. I'm like, Oh, I used to just say, I used to think when people said that. Oh, they think great means what I think great means. But then I learned to say what what is it? And they say, oh, it's been in the sevens. And I'm like, well, that's, that's by the way. It's it's hard work and well done and etc. But it's not a great agency. And you know, like so like, you know, what is it about their management style that's leaving them at a seven? What could they be doing slightly different that would make it a six or lower or whatever. And, you know, I think you have to have those conversations, or else people kind of I don't know, they kind of float to the middle of what their understanding is like if at some point. I mean, I think ADA still says sevens a target a one C? So I believe so. Yeah. So if your doctor is telling you, Hey, listen, we're happy around seven, and you float up to 7.8. Sometimes he goes, Don't worry about it. Like like, you know, now in your head, you're like, wow, seven eighths, okay. And you know, if just understanding how insulin works a little differently, or how the food was impacting you, or something like that could take that number and bring it into the sixes. I mean, that's a conversation worth having, in my opinion. So, you know, I love that that happened for you. And it's funny, right? You didn't want your husband looking at your CGM. But when it came to your son, you were like, I'm happy to let anybody give me advice anybody at all. Like, I'll go out in the world and find people, not your husband, but other people. It's I just, I want I want unmarried men to hear that so they know what to expect one deck, but by the way, vice versa, ladies, it's gonna happen to you too. You'll be like, he doesn't listen to me listens to everyone else. It's true. Yeah. I'm gonna shift gears a little bit here for you. Because in your notes, it says that are you untethered?

Rosalind 44:21
Okay, so that that's the reason why I wrote to you last year. Yeah. Not me, my son. Okay. So when he started middle school, sixth grade lot, well, two years, he's in eighth grade now. So that was two years ago. His blood sugar, he was very, very thin. And so the pods would sometimes fall off, or the sites would become like, I don't know, blocked, I guess is the word I forgot. Or he would always complain that it would hurt. He would always have an issue with the pods, especially while he was in school. So I a couple years ago, I had listened to another podcast. I can't remember her name, but she had just mentioned him PASI that her son was going through puberty and that he was untethered. So basically, he was taking PT recibo was still on his pump, because he was on so much incident. My son had just the, you know, he was 1112 he started puberty, you know, you could tell the changes, growing voice change all that. And the blood sugar's were just insane. And I felt like I couldn't keep up. And so I asked the doctor again, I asked, I said, Hey, can I can we do this? Can I give him a little bit of extra PT receiver, while his pump is still working? Because my fear is that he's going to go into decay, or something happened while he's in school, and I'm not going to be able to make it on time to school, or he's gonna pay attention to it. She told me I couldn't do that. She said something about the pump getting air in it. And it just didn't make

Scott Benner 45:48
sense. Yeah, that's not an accurate description of your question at all. The idea of being untethered, I don't even know where that word came from, you would shoot your Basal insulin, like, like you were on MDI. And some people then would just use their pumps for meal and corrections. Or sometimes they would split it a little bit, a little bit of basil from the pump, a little bit of basil from the MDI. Now, you can see that sometimes the people who have like, like significant insulin needs, because you can flood your pump sites if you're using a ton of insulin through them, and it makes them kind of less effective sometimes. Right?

Rosalind 46:22
And I think that that's what was happening to him. He was on so much insulin at that point. I mean, I kept changing his Basal rates. I kept telling him to Bolus more for lunch. And I mean, his blood sugar's were just constantly high while he was in school, right. So what I decided to do was, I said, let's start with giving him seven units of PT receiver, and then just still keep his Basal going. Like

Scott Benner 46:47
how the story went from your doctor told you no to how you did it.

Rosalind 46:52
Oh, yeah. I just couldn't sit there and watch it anymore. I was at work every day, looking at his Dexcom. And the moment lunch would come. Not even that just breakfast. And I would always ask him, I'm like, What are you eating? What are you doing? I mean, that's a whole other story. Eventually, we found out he was he was having lunch from home and also school. Yes. To lunches. He's a big eater. Not a big guy. Not a big kid. But he eats a lot. Yeah. And so

Scott Benner 47:23
if the doctor said No, where did you get the transceiver from? Oh,

Rosalind 47:27
I will still MDI.

Scott Benner 47:29
Yeah, yeah. You know, earlier when I said, Do you not take crap from people and you act it all. demure? I feel like there's a whole other part of you that could have answered a completely different way.

Rosalind 47:41
To me, I mean, I don't see it that way. I just see, like, I don't know, I just feel like if someone tells, you know, just Can you try to figure it out onto someone says, Yeah, or you figure it out yourself? I guess I don't know, Ross,

Scott Benner 47:51
and I've been talking to you for 45 minutes now, like your common sense is really strong. It's impressive, actually. So every time you've been intersected with a problem throughout your story, you actually refer back to common sense. And you follow it, which is this very cool. And, and you did it here with this too. So good for how long did he doesn't still do that? Or he does?

Rosalind 48:12
He does not? He does not. So he did that for a good year. It did help a little bit, it helped because we stop having pod failures, right? And occlusions. It helped with that. And also helped stabilize his blood sugar a little bit more, he was still getting high. But it wasn't as bad as before. And at least I knew, Okay, if he has a pod failure, or like is not dosing correct, you're correctly or whatnot. IBC still has that background incident in.

Scott Benner 48:41
I hear people talking about now to their pumping. But they also got themselves a prescription for a Frezza. They inhaled insulin. And when they get like, when they get tough spikes or sticky highs, they'll use the president break the high, but the pump does everything else. It's very interesting when people get, I don't know, a little DIY about diabetes, and like, you know, like the flow neighs idea like, oh, look with the internet figured out, you know, it's really interesting. Oh, absolutely.

Rosalind 49:10
I think that Instagram, Facebook groups and your podcasts have been a great help because you just hear something and it kind of sticks to you. You're like, Wait, let me try that. I've never thought of that. And then you just try it and it either works for you or it doesn't and I just tried, you know, fantastic.

Scott Benner 49:26
Hey, is your daughter? Did you do trial net or anything to see if she had any antibodies?

Rosalind 49:33
I tried trial net for her and her antibodies were negative. That was in 2018. Okay. Then fast forward to a year later. I picked her up from summer camp one day, and she's like, she tells me she doesn't feel well. And I decide to check her blood sugar and I'll never forget this. It was one night before. So I freak out. I asked her what does she have? She said she had a cookie, no juice. So I'm rushing home. I get home. I check her blood sugar again. It was like 117 120 I was still afraid. So I took her to the doctor to get blood work done. And this was the second time that I had her tested through my son's Endo. And again, she didn't have antibodies. I guess her sugar just went high, because they gave her too much sugar.

Scott Benner 50:17
I felt like a hippie for a second. You shouldn't drink fruit, or vegetables. Like you shouldn't be blending things. Well, I'm a vegetables but think you shouldn't be blending fruit down and drinking it. It is not good for you. Your body does not know how to handle it like that. So Right. Yeah, it's why it's so effective at bringing up a low for a person with type one. And battling that what that insolence doing because it's just it's not your systems just not meant to drink juice. And by the way, I don't just mean like, you know, like something that a company makes and sticks in a juice box. I'm talking about orange juice, pineapple juice, like that stuff is hard on your system. So right

Rosalind 50:53
because it's so many oranges for one glass, instead of just having one orange and moving right along. Yeah, I got a glycemic

Scott Benner 50:59
index for that is insane. It's just, it's a ton of sugar. So anyway, whatever you give me I'm like, yeah, do what you want. But I'm just saying no. after

Rosalind 51:10
that. I never gave her juice again. I mean, she was one of those kids who love juice. I mean, now she'll have like the Capri Suns that have like five grams or six grams of sugar. But that's it. She will not have a juicy juice ever again. Which is what they used to give them in school. Yeah.

Scott Benner 51:23
Oh, listen, look how look how far you've come from your mom like laying those orange sodas on everybody. Yeah, I know. People don't know. Like, listen, you're not my age. But you could buy a two liter bottle of soda for 50 cents. And it was a lot of liquid and it was sweet. And people liked it. And you know you could the house was stocked with it like we used to have it. Oh, absolutely. There's everywhere like the countertops. There was like soda bottles lined up everywhere. Oh, yeah,

Rosalind 51:53
absolutely. Especially our generations that they weren't as health conscious as now. Now everyone's low sugar, low fat, organic, but back then we just ate whatever was there. Yeah, whatever

Scott Benner 52:03
was cheap and available. That was food. So yeah, my god the pizza, they would serve us at school. I don't even know how to describe that. It's like if you if you know what I get an Ilios frozen pizzas. That's bare bones frozen pizza. I don't think the pizza at school was that good even.

Rosalind 52:22
It was not. It was not. It's funny because my daughter hates school lunch. I have to make her lunch. She brings in lunch every day. And sodas my son, especially now with the car. But she hates school nodes.

Scott Benner 52:36
Art and moved from her freshman to her sophomore year in college to a an apartment that had a kitchen because she's like, I can't keep eating here. It's It's killing me. Like, yeah, it's gross. She came home with weight on she came home with like her agency was up like her. She's like, Dad, you should see how much insulin I'm trying to use. Like to keep this down. She's like, I gotta get a kitchen. And that that's what she's doing now. And boom, you can see it right away though. Just the processed food. And I don't know all the fat and salt. They put in things so that it tastes better. And just, you know, not good for you.

Rosalind 53:11
Yeah, it's awful. It's awful. It's so hard on your body and on your sugars. Because especially when you eat something like that. It's like your sugar stays high forever. It's like it doesn't want to come down. Oh,

Scott Benner 53:21
yeah. She said actually, she said she didn't feel well, yesterday. It's so weird for your kid to be sick. Like, and not with you. Like it's a hard thing to get past. You'll see when your kids get older. It's it's a terrible feeling. Yeah. But she just like she called me in the nighttime. She goes, Man, my stomach hurts like I am sick, I feel nauseous. And she's like, I'm just gonna lay down. And you know, she gets up the next day. And it doesn't feel good in the morning, but eventually feels better. And she's great. And then the afternoon comes. And I'm talking to her yesterday afternoon. We're FaceTiming and she's telling me about how one of her classes went. And her roommate comes from negocio you want to go out and get this. And Arden goes I really don't want to cook today. Like yeah, let's do that. And I was like, alright, well, you know, I'm gonna go you go ahead and go and do what you're going to do. Her blood sugar was not good for like three hours after she ate. And I texted her and I was like, Hey, you miscalculated this meal, like, you know, just, you gotta hit it. Again. It's not, you know, you're not making a dent in this and the algorithm, by the way is hump and trying to get it down. It's not working. And I'm like, you know, you need to add more carbs or more insulin or something like that. But that was just one time of her getting into a groove of bolusing for food that She's made herself and bought at the grocery store versus going to a restaurant. And then she was struggling again and didn't you know, all the regular amount of insulin she should have used for a meal like that that she would have made did not work when they bought another place. So

Rosalind 54:49
yeah, it's crazy. And I She actually doesn't live far from me because I've seen that you posted she's out in Savannah. We recently moved over here not far From the Oh, no

Scott Benner 55:00
kidding. Oh, that's crazy. Yeah. Have you been in the South? While you were been in Florida? So you move north a little bit? Um, yeah. Nice. Do you like it? Oh,

Rosalind 55:09
it's very different from from where I used to live. Because even though Florida is in the south, I lived in Miami. So it's a very different it's not at all.

Scott Benner 55:18
Miami has its own place. It should be its own state.

Rosalind 55:20
Is everyone? Yes. If you know, you know, it surely is. So it's it's been very different. But

Scott Benner 55:26
it's good. Nice. Arden says it's a little too slow for her. It is it's

Rosalind 55:31
very slow. But we actually moved here because my husband started working at a job here. And so we just decided to move the family here because at the end of the day, Miami is very fast paced, and in my opinion, not the best place to raise kids. So

Scott Benner 55:48
what if you want to give them a coke habit?

Rosalind 55:51
party all the time. I'm like, Yeah, that's just not working. But

Scott Benner 55:55
it's not bad. Yeah, no, Arden says I love it here. It's a lovely place. It's too slow for me. I don't want to live in the south. And she's like, she goes, don't get me wrong. I'm thrilled to go to college. She was places wonderful and everything. But yeah, I don't want to stay here. We're like, Okay, well, oh, yeah,

Rosalind 56:11
my son says that already. He's like, Oh, once in five, because he already has his life planned out. I'm like, That's okay. I don't want to stay here either. Once you guys are old enough and leave, I'm out of here to Daddy

Scott Benner 56:21
can come if he wants to, but I'm getting out of here. Have we covered everything you want to talk about? If we missed anything? No,

Rosalind 56:30
I think we covered everything except that I didn't talk about his celiac diagnosis and how that was kind of like, similar to the same thing. They tell you a diabetes. Um, it's interesting. Um, once we moved here, he had a new Endo. And so they ran all the bloodwork all over again. For some reason that was interesting in itself as well. That's another thing I should add as to why I'm not crazy about living here. But healthcare here, in my opinion is not great.

Scott Benner 56:57
Yeah, a little downslide. And in the quality of the doctors, you're seeing not just

Rosalind 57:01
the quality, the quantity, actually, there's only like, a few angles. There's only one pediatric Gi, which to me is insane. Okay, yeah, it's been even for me, there's like only a handful of endos over here. And it's been really difficult to find one that I like, I don't like any of them. And then I just have to stay with the one I have. So luckily for me, I know what I'm doing. Because I mean, I don't want to keep going. But for a short while I worked at an endo office here. And it's really sad to see how people here manage their diabetes and how poorly they're doing it, it was really sad. I actually had to stop working there because I couldn't see it anymore. I

Scott Benner 57:42
really just the level of understanding that they had as patients or as the doctors had are both both the

Rosalind 57:49
level they had his patients. And I also got to see it from the other side. There's only so much a doctor can do when they have so many patients, and only a certain amount of time per patient. And this person's coming to you and you're trying to help them but there's only so much you can do to help

Scott Benner 58:06
man they don't understand. Right. And yeah, they really,

Rosalind 58:09
don't. They? I think that's another thing. I think a lot of them just don't understand. They can't wrap their head around it.

Scott Benner 58:16
Yeah, no, I believe that too. I look I get to see. I mean, between the Facebook page and the podcast, I see a lot of people like 10s of 1000s of people talking about their diabetes. And it's I think you're right. I think there's some people who have a basic understanding, or some people have a slightly better understanding. There's some people are like superheroes at it. And there are some people that when you watch them, it feels like that, like no one's ever even, like mentioned to them what's going on? They're just right. Yeah,

Rosalind 58:48
I just think they think that this is like, Okay, I have diabetes, I'm just gonna end up in a bad place. It is what it is. I mean, I saw it all from younger people to older people. And I mean, just to hear their blood sugar. I'm like, how are they walking in here? Like,

Scott Benner 59:03
it's that, like, I've got the sugars feeling. And this is my life. This is my lot in life. And this is what gets me and I guess this is how it goes. And it's so sad because you know, it's doesn't have to be like that. And, and yet, it does end up that way for a lot of people.

Rosalind 59:19
Yeah, man, I think yeah, definitely. And the health care here, you know, it doesn't work. I mean, it doesn't help. There's, like I said, there's not a lot of doctors that you can choose from, you just have to stick to whoever has an opening. And you just, it's like good luck. And so when I took my son to this Endo, which is what was covered by our insurance, and not that there's any other endos around, I was taken aback because he asked me about what sure my son had type one diabetes, like, yeah, since 2018. And I'm also type one. And so he gives me a look and he goes, Well, we're just gonna run on all the blood work. So he goes ahead and does that.

Scott Benner 59:57
You've had diabetes for 30 years. Was your son's had it for five years? And he said, Are you sure you have type one? Well,

Rosalind 1:00:05
and not only that, then he also asked me if I was willing to talk to other parents. Oh,

Scott Benner 1:00:10
well, yeah. Oh, he saw you're a one season. He's like you want a job?

Rosalind 1:00:16
Are you willing to talk to other parents about Taiwan? And I'm like, I guess if you want me to, because I guess he was seeing some really bad stuff. And I can only imagine because at the time, I was working in another office, and I knew and I'm like, if you want me to help, I could help. But I don't. I mean, I'm not a medical professional, per se. I was just working on the front desk. Basically, he ran the paper, the blood work. And then when we go to the next visit, he says that my son's the markers for celiac were a bit elevated, and he was referring us to the GI. So he goes and we had to have, he had to have an endoscopy, which of course came back that he had damage and he had Cydia. And so when they told us this, I thought it was absolutely horrible that we're sitting there with my son, and in comes a doctor, basically, part of her explanation was that if he doesn't follow what he, you know, a gluten free diet, he could end up having cancer. And I'm like, Who says that in front of okay, like, really? Oh, my

Scott Benner 1:01:14
God. I've talked to so many people who got that like that scare tactic, gi doctors. And by the way, I'm not saying it can't happen. It certainly could. But I mean, that's a pretty aggressive like first step for that. Do you know what I mean? Yeah.

Rosalind 1:01:31
Well, not only that, maybe that's something you might want to mention to me when he's not in the room. You know, can we

Scott Benner 1:01:35
talk in the hall for a second?

Rosalind 1:01:39
So needless to say, I was a mess. When I left that place. Again, it was like reliving another diagnosis. It was very difficult, but he's he's taking it like a champ. He's doing what he needs to do. But it's definitely not easy having more than one autoimmune, especially not celiac. And I've learned that a lot of people actually have both. But yeah, I would say if I had to choose one, I'd say type one. And that's what he says is what I

Scott Benner 1:02:05
have to tell you is that so many people are so poor communicators is fascinating to me. I mean, what does that look like? Like, Hey, buddy, do you like spider man? You do? Oh, yeah. Do you like Tom Holland or the other guy? Oh, that one? That's great. If he bred you're gonna get cancer. Oh, great. What in the hell? Like, like, seriously, what it? How does? It's so frustrating. It is really, really very frustrating. You know? Like, it would have been a hard thing to say to you like to pull you aside and go, Hey, listen, this is not, you know, whatever the stats are about it. Maybe it's not incredibly common. But you need to know if this is a thing. You just go home and just blindly ignore because some people have that quiet celiac, right where it's doing the damage, but they don't have pain from it. So they they just what was happening to my son, I get that they need to get it through to you that you can't just go home and ignore it because there's not going to be any symptoms. But my goodness, like whatever. I don't know, at this

Rosalind 1:02:58
time, it was not great. Needless to say. I was trying to find another doctor but I know that there is in town for pediatrics. So

Scott Benner 1:03:09
yeah, I'm, I feel very lucky about the person we moved Arden to as an adult because it means she doesn't even do type one anymore. But we were just like, please, like, please, I don't know if you've ever heard the thyroid episodes. There's an episode with a with Dr. Benito. And she came on and explained thyroid stuff so beautifully. And she she manages all everyone's thyroid in my family. But when Arden had to leave the, you know, the the pediatric Endo, I called her and I was like, Is there any chance you would see Arden for her type one on like, we won't be any trouble? Like, you know, I just need you to run some labs and write some scripts. And she's like, Yeah, no problem. And I was like, Oh, that's great. But it already freaks me out. She's like, you know, she's not an old lady. But she's a she's an adult. I'm like, she's not going to be in practice for as long as Arden needs somebody. And so right. It's scary. Good.

Rosalind 1:04:01
Doctors are hard to find. And not to say I mean, his endo is not a bad doctor, though, because He even offered to just do the blood work to keep up with his levels for celiac. Because I guess maybe he knows that he's not the best GI doctor.

Scott Benner 1:04:19
I don't know what I'm doing. What do you say? What do you whisper I don't know what I'm doing. Jesus, my God, what I went

Rosalind 1:04:29
back to him after the, you know, he got diagnosed with celiac. And he went back to his endo follow up. He actually asked me how did I like the doctor and I said, I'm actually trying to find a second opinion.

Scott Benner 1:04:42
Don't worry, we're also trying to get away from you too. Right? I don't, you know, I can see a world where, listen, I'm a proponent of the idea of like something you mentioned actually, I guess they used to do it a long time ago. You said there was basically like tight One day for kids it your Windows Office? Like, yeah, I think I think you wouldn't need as many qualified doctors if they could see people in bigger groups. So if you found a great Endo, but I don't know, instead of seeing 10 people a day, you know, 15 minutes at a time, like, what if you just had three two hour talks every day and 100, people could come to each talk. And you could just come in at any point during the week and sit down on one of those talks. And there'd always be a talk happening with a qualified person, and it becomes a HIPAA thing, because people would want to talk out loud about their specific stuff. But know that you couldn't do the big talk, and then roll people into the small appointments, write their scripts, ask their personal questions and get them out. That would

Rosalind 1:05:47
actually help a lot here, because that's how they run it here. He only sees as type one patients on Wednesdays, I

Scott Benner 1:05:55
just think there's a better way to do it. And I mean, I need somebody to think about it and actually try it. Right.

Rosalind 1:06:00
If someone could figure it out, it would be great, because it's really sad in places like here that I'm experiencing. Now. You know, a lot of these kids are going to grow up with type one from a very young age, and they're not going to have any knowledge of what they're really supposed to do. And

Scott Benner 1:06:14
now they're gonna Yeah, they're gonna have problems now for sure. Okay. I really appreciate you doing this. This was fantastic. Thank you for for reaching out. Thank you for the nice stuff you said about the podcast. I'm thrilled that it helped you. And I really appreciate you sharing your story. And your son's story was is really fantastic. And like you said, Well, I hope more people reach out with varying backgrounds and want to be on because this was fantastic. Absolutely.

Rosalind 1:06:42
Thank you. Yeah, I mean, we're coming from all types of places, backgrounds, and everything I want definitely doesn't discriminate. So it's great to hear all the stories, ya know

Scott Benner 1:06:53
that it really is. It's just very kindly to come on and talk about it like this. Thank you so much. Can you hold on for a second for me? Sure. Thanks. A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box. This is where we get our diabetes supplies from you can as well use the link or call 888-721-1514. Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us met. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever since cgm.com/juice. Box, get the only implantable sensor for long term wear get ever since.

If you're ready to level up your diabetes care, the diabetes Pro Tip series from the Juicebox Podcast focuses on simple strategies for living well with type one. The pro tip episodes contain easy to understand concepts that will increase your knowledge of how insulin works, and so much more. My daughter has had an A one C between five two and six for since 2014 was zero diet restrictions, and some of those years include her in college. This information works for children, adults, and for the newly diagnosed and for those who have been struggling for years. Go to juicebox podcast.com and click on diabetes pro tip in the menu or head over to Episode 1000 of the Juicebox Podcast to get started today. With the episode newly diagnosed we're starting over and then continue right on to Episode 1025. That's the entire Pro Tip Series, Episode 1002 1025. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com